SHE CAME TO LIVE OUT LOUD
     An Inspiring Family Journey
     Through Illness, Loss, and Grief
     by Myra MacPherson
     Published by: Scribner,
     New York, NY. 
     Copyright 1999 by Myra MacPherson
     BOOK JACKET INFORMATION
     Acclaimed author and journalist Myra MacPherson takes the reader on a
remarkably intimate journey into the world of Anna, a vibrant young woman,
as she and her family live with dying. Threaded through this personal
tapestry are vital information and guidance needed by each of us when
struggling with great stress and grief. It teaches us all how to be
stronger friends for those we love who have a limited time to live.
     Anna was wise and witty, brave and boisterous. MacPherson spent three
years with her, her family and friends; you are there, experiencing the fun
and laughter, anger and despair, remission and, yes, humor. Anna teaches us
that a positive attitude can prolong life and how to live out loud until
the last second.
     MacPherson addresses common concerns:
     -- How families deal with young and teenage children of sick and dying
parents
     -- How family and friends provide better caregiving support
     -- Why resilience, anger, and humor sustain us and why platitudes are
odious
     -- The health field: why doctors avoid death and often ignore dying
patients, and advice for change
     -- Grieving: how long it lasts, how and why men and women grieve
differently, what grievers can do, and how friends can help
     After Anna dies of breast cancer, you observe her husband, Jan, who
learns how to grieve positively as he copes with both his pain and the
struggles of a single parent raising two adolescents. There are lessons for
everyone--those confronting death for the first time and those living on
after loss. As technology allows us to live longer, most of us will
experience the "abnormal normalcy" lived in the homes of the seriously ill.
Ordinary daily routines commingle with the terror of waiting for the next
medical report, the next stage, the next new hope.
     At a time when most of us seek alternatives to the inhumanity of dying
in impersonal institutions, Anna found her solution in her own home,
surrounded by loved ones, assisted by hospice professionals. You are 
inside that home, a home filled with love and care. Ultimately her
caregivers' grief was lessened knowing that they contributed to a
palliative pain-free ending.
     She Came to Live Out Loud is a heartfelt tribute to the triumph of the
human spirit in adversity. It reminds us that the capacity for love is what
gives us the opportunity to live meaningful lives. It teaches us survivors
that there is, eventually, joy in remembering those who once gave so much
to us, that there is, indeed, love after death.
     Myra MacPherson is the author of two critically acclaimed
bestsellers--Long Time Passing: Vietnam and the Haunted Generation, which
was nominated for the Pulitzer Prize and was a finalist for the Los Angeles
Times Book Award, and The Power Lovers. She was a celebrated journalist
for the Washington Post and wrote for the New York Times and numerous
national magazines. She lives in Washington, D.c., and Miami with her
husband and has two grown children by a previous marriage.
     Advance Praise For
     She Came to Live Out Loud
     "(the book) is moving, deeply moving. I hope it reaches many readers
and penetrates their hearts."
     --Elie Wiesel, Andrew W. Mellon
     Professor in the Humanities, Boston
     University
     "Through this very personal story about one woman's battle with breast
cancer, Myra MacPherson weaves practical and inspiring lessons into an
intimate portrayal of Anna and her family and friends. Those who have an
illness and those who care for someone with an illness will benefit from
Anna's energy and courage and the support and dedication of those who love
her. We have much to learn about coping with illness--Myra MacPherson's
book is a powerful educational tool for a very difficult subject."
     --Former First Lady Rosalynn Carter,
     coauthor of Helping Yourself Help
     Others: A Book for Caregivers
     
     "With skill and sensitivity, MacPherson conveys the story of this
remarkable woman and her family. Anna's uncommon courage and lived wisdom
provide invaluable lessons for men and women everywhere, as we strive
to support loved ones who are confronting life's end--or as we do so
ourselves."
     --Ira Byock, M.d., author of
     Dying Well
     "A fast and riveting read ... Myra MacPherson is a great storyteller,
and Anna's story carries meaning for us all."
     --Lee Smith, award-winning novelist
     "This is a rare and wonderful book that tells the poignant story of
love and death in a family. MacPherson, however, also weaves advice,
information, and common sense into this story about death and grief, which
makes it an extraordinarily helpful guide to those who want (or need)
to explore these often avoided topics."
     --Jimmie C. Holland, M.d.,
     Chairman, Department of Psychiatry and
     Behavioral Sciences, Memorial
     Sloan-Kettering Cancer Center
     ""Denial" is not a river in Egypt. It runs through American culture,
allowing many to think they can avoid the unavoidable--death and grief.
Myra MacPherson is a brilliant writer who plumbs her direct confrontations
with death and grief in the prologue. She then introduces us to a couple
of the baby boom generation--Anna and Jan Johannessen. She spends two years
with them as this strong, magical woman Anna slowly dies, and then spends a
year with her family as they cope with grief. Confront denial. Read this
book!"
     --Former congresswoman Patricia
     Schroder
     "To write about grief without mawkishness, with deep, real feeling for
what it really is, requires a truly good writer. Myra MacPherson has done
it."
     --Betty Friedan, Author of The
     Feminine Mystique
     
     Also By Myra MacPherson
     The Power Lovers: An Intimate Look
     at Politicians and Their Marriages Longtime Passing: Vietnam and the
Haunted
     Generation
     For Anna,
     Jan, Ellery, Lindsay, and
     their extended family and friends
     and
     for Jack and
     our extended family and friends
     and
     in memory of my mother
     
     If you asked me what I came into this world to do, I will tell you: I
came to live out loud.
     @emile Zola
       SHE CAME TO
     LIVE OUT LOUD
     Introduction
     In Living with Life-Threatening Illness, I emphasize that even in the
midst of a struggle with a disease that threatens existence, persons still
continue to live. They work, raise children, argue with spouses, make love,
enjoy friends, and otherwise engage in the sublime and mundane facets of
life. They do this as they cope with anxieties and treatments. Even in the
face of illness, they live.
     But Anna's story illustrates that point far more eloquently in this
new book by Myra MacPherson, She Came to Live Out Loud. The book is
subtitled An Inspiring Family Journey Through Illness, Loss, and Grief. And
it is. Part of the reason for that is that it is Anna's story, powerfully
told.
     As MacPherson recounts in this book, I met Anna toward the end of her
struggle with cancer. It was to be one of her last "good" days. And it
wasn't that great a day. Despite the wonderfully prepared and presented
dinner, Anna did not have much of an appetite. No matter, she still
sparkled. She had a way of engaging each and any person she encountered.
Any sense of sorrow, even pity, fell to her enchantment. Only later did
reality remind me that this rare individual might not be alive in a few
weeks.
     Yet this is more than the story of a special person, of even an
unusual family's struggle with cancer. It is much more universal than that.
In a sense, every story of a life-threatening illness is the story of how
one person, and one family, cope. These cases are the building blocks
of the theories we have about how we react to illness, loss, and grief.
Those theories are merely abstractions of that individual reality.
Moreover, Anna's story reminds us never to lose sight of the individual in
our theorizing but instead to focus on how that person copes, on his or her
strengths, on the uniquely individual sources of hope and sustenance.
     MacPherson shares with us Anna's story, her up-and-down struggle
with the disease, her decisions, and her strengths and weaknesses. And in
telling that story, we learn another truth, that every disease affects
those around--spouse, children, family, and friends. And so we see how they
cope with Anna's illness as well as her death. We learn from them as well.
     This book will touch us in very different ways. For some of us, it may
remind us of the struggles we have experienced or witnessed. For others, it
may reaffirm, help us rediscover--or, even, discover--our own strategies
and strengths as we confront illness or loss. And I believe for all of us,
it will allow us to acknowledge the very quiet yet special heroism that
allows us to live fully even as we die.
     Kenneth J. Doka, Ph.d.,
     Professor of Gerontology, College
     of New Rochelle; Lutheran minister;
     Senior Adviser to the Hospice Foundation
     of America; Chair of the International Work
     Group on Death, Dying, and Bereavement;
     Past President of the Association for Death
     Education and Counseling
     Prologue
     Learning
     The Elephant in the Room
     There's an elephant in the room. It is large and squatting, so it is
hard to get around it. Yet we squeeze by with "How are you?" and "I'm fine"
... and a thousand other forms of trivial chatter. We talk about the
weather. We talk about work. We talk about everything else--except the
elephant in the room. There's an elephant in the room. We all know it's
there. We are thinking about the elephant as we talk together. It is
constantly on our minds. For, you see, it is a very big elephant. It has
hurt us all. But we do not talk about the elephant in the room. Oh, please
say her name. Oh, please say "Barbara" again. Oh, please, let's talk about
the elephant in the room. For if we talk about her death, perhaps we can
talk about her life. Can I say "Barbara" to you and not have you look away?
For if I cannot, then you are leaving me. Alone ... in a room ... with an
elephant.
     Terry Kettering
     I kiss her forehead. It is as cold as an ice sculpture. I
involuntarily reach up to touch my mouth, tingling now with that ice-burn
feeling. It conjures up a remembrance of times past, childhood mittens
beaded with snow lifted to mouth, cold fabric sticking to warm lips.
     I look down at my mother, who is no longer my mother. I had not been
     able to get there in time, while her eyes were open, while she could
say hello, while I could hold her. At eighty-one, she looks as young in
death as she had in life, a round full face saved by high cheekbones. But
her arresting dark brown eyes are closed forever. My mother is unpainted in
death, thank God. Unlike the rituals of funereal viewing, the urn would not
need such cosmetic totems as rouge and lipstick and silk-lined caskets.
     When I stumbled off the plane from the East Coast that Saturday
morning, I picked up my father and soon we entered this tiny funeral home
in Indio, an undistinguished hamlet in the windswept California desert. The
funeral home had gone all out, one could say, by opening its doors even
though my father and I had not requested an appointment--which, we were
assured by the young man in the T-shirt and Bermuda shorts, was protocol.
     "You are here to arrange the final details?" he asked, in a tone not
far removed from that of an elementary teacher talking to the class.
Nothing could be more final, I felt like saying, anger rising. This was an
indifferent man among the dead, with his pressing concern, no doubt, an
afternoon tennis game. His calculator clicked away: the cost of embalming,
for having picked mother up at the hospital, for putting a notice in the
newspaper. I said that I would like to see my mother. The young man
informed me that they hadn't prepared her "to receive guests," as if she
were a grande dame in her mansion. "I am not a guest," I said. "She is my
mother and I would like to see her."
     "Very well," he said, flipping his calculator open again. "It will
take a few minutes to prepare her."
     "What do you mean "prepare"?"
     "Well, we have to make her look presentable."
     I found out that preparation meant putting my mother's body on a table
and covering her with a pink blanket; pink, of course, to cast color.
     "To see her," he said, "will be an additional fifty dollars."
     He was not conditioned for the explosion that came from me and my
father. The Uriah Heep of Funeral Homes mysteriously and quickly summoned
the owner, who entered from a back door. He was apologetic about the
appearance of his assistant. "Normally, he would have received you in a
coat and tie, but since you didn't call for an appointment ..." he said,
his voice trailing off.
     Appearances weren't the problem, I said. What mattered was a basic
lack of consideration for feelings, the concern for their precious fifty
dollars. The voice of the owner glided along: "Had you requested viewing
of the body, it would have, of course, been itemized in the initial
billing, but since this was a last-minute request, we could do nothing but
to add it."
     "Why does it cost fifty dollars?" I asked.
     "Well, it just does. It is so itemized," he said, bringing out his
list much like a clerk at the dry cleaners: $3.75 to iron a shirt with
French cuffs, $4.50 for a suit jacket.
     The desire to see my mother took precedence over the principle of
refusing to pay their fee. After my moments with Mom, a whispered "I love
you" to that stilled body beneath the pink blanket, I returned to the outer
office with its brown fake-wood paneling, fake orange flowers, fake
sentiments (at least to this funeral home) hung on the walls: "Show me the
manner in which a nation or community cares for its dead and I will measure
with mathematical exactness the tender sympathies of its people, their
respect for the laws of the land and their loyalty to high ideals." The
funeral home's notepaper had placed its most ironic message in italics
above the telephone number: "In Your Hour of Need."
     Flying home, I read a newspaper item that sent me into hysterical
laughter--dark, macabre humor that inexplicably relieves tension and
sorrow. A funeral home and a customer had quarreled over a bill, the
customer saying that it had been paid in full, the funeral home
disagreeing. The home settled the argument by dumping the dead body on the
doorstep of the survivors. I read it to my dad on the phone, saying, "Well,
it could have been worse!" This image, despite the grimness for those
involved, caused both of us to laugh. It was the only laugh in a week that
had jangled and jarred its way to an end. No sooner had we walked back
inside my parents' bungalow from the funeral home than I was quickly
erasing all traces of my mother. My father had instructed me to.
     "This was not the way it was supposed to be," I thought, taking
jackets and golf skirts and slacks off the rack, folding up nightgowns,
grown larger over the years. No good-byes and no warning. Mom was never
seriously sick a day in her life. Nor did we ever say good-bye as a family.
Dad felt that he could not get through it and said no to a memorial
service.
     The jangle of the phone broke into the quiet of the cabin in the North
Carolina mountains. My father, stumbling over his words, told me that Mom
was in the hospital and may have had a slight heart attack. I had never
heard such frailness in his voice. My hands trembled as I called the
hospital three thousand miles away. Mom was in intensive care but resting
well. I walked through the woods with my dog to reach the clearing and my
private place of serenity. Sun shone over mountains misting into rounded
humps. Insects buzzed. "Please, God," I said.
     The next call from the hospital was noncommittal. It appeared as if
mother had had a mild heart attack. If tests showed no complications, she
might go home within days. I fastened on to that part of the message. I
could not catch a plane until early next morning. That would be fine, they
assured me. (later I learned that my mother, like countless others who feel
something is wrong, had avoided rather than sought help; only when my
father saw her reading up on angina did she go to the hospital.)
     Relief overwhelmed me as I threw clothes into a bag, planning to care
for my father first and then Mom when she got home. I had such a longing
to talk to Mom, but there are no phones in ICU. The nurse assured me that
Mom knew I was coming tomorrow and that the news made my mother "very
happy." Forty-five minutes later I was completing last-minute details in my
office. The phone rang. It was a call I will remember all of my life. I
heard my father's strangled words. "Things are worse. They don't think she
is going to make it." I felt nauseous; a tingling shot through my body.
Suddenly I was shrieking. Six years later I still remember that raw,
banshee wail, echoing through the trees as I raced up to the house. My
husband, Jack, caught me in his arms in the living room. "They think Mom is
dying," I sobbed.
     In that instant, my husband, there for me as always, decided to fly
with me to California. The two-and- a-half-hour drive to Charlotte, North
Carolina, was silent. My husband's quiet manner, sometimes a soothing balm,
sometimes an irritant, seemed in keeping with my own stunned silence. I did
not want so-called reassuring platitudes. Nor did I want practical advice
on how to handle things. We pulled into the driveway of my daughter,
Leah's, apartment; she was starting her television career in Charlotte. I
raced to the phone. Dad's line was busy, so
     was my brother's. I knew without speaking to anyone that Mom had died,
even as she was wired and monitored in the intensive care unit. My brother
confirmed this when I broke in on the call.
     Leah set about making stiff drinks, and I downed them quickly as tears
and storming anger fought for supremacy: anger at the hospital and the
airlines and for the circumstance of living in rural mountains in the
summer that made it impossible to catch a plane immediately; anger at
myself for not having called Mom the week before, for believing those
nurses and doctors and their positive reports.
     And there was guilt: Why had it taken me so long to understand my
mother? I asked myself many times. There were encroaching family dynamics.
My daughter was concerned for me, not for a distant grandmother who had
died on the West Coast. "You never got a chance to really know her," I
wailed. Such secondary losses, as they are termed, were already entering my
thoughts. At dawn, eyes bloodshot, with a fiercely pounding head, I started
on a journey--a long journey as I collapsed into grief and the shock of
sudden and unexpected death. It lingers to this day. But this led to a
journey of discovery as I determined to learn how to ease the inevitable
grief of this inevitable end of living we all face, for us and for our
friends and families--a determination that led me to this book.
     If there was any reward to this knifelike shock of Mom's death, it was
sensitizing me to the full weight of grief. As I sought answers to help
people through this time, I found myself facing an American paradox of
insane proportions. We encounter loss and sorrow daily. And yet we collude
in a pathological dance of denial that merely heightens the pain of
grieving. I am no stranger to this disease of denial myself--that ostrich-
head-in-the-sand this-won't-happen-to-me-or-people- I-love syndrome, an
avoidance of what is so real and constant. Frantic activity, "burying
yourself in work," are distractions, but they won't cause grief
to disappear. We grieve for everything, the small and the large--the end
of a summer's vacation, the end of youth (and that can mean anything from
turning thirty to turning eighty!), lost friendships and lost loves,
divorces and downsizing, not getting into the college of our choice,
dwindling careers or power, moving away from family or friends, and on
to the deepest losses, illness and death. Being alive automatically
     means experiencing grief. It is normal--our common bond. If we are
capable of love, we are capable of grief; that's all there is to it.
     Death has been the fascinating core of plays, books, poetry, song,
comedies, and romance since antiquity. It is constant fare in the movies
and in New Yorker cartoons, an endless television staple, either in love
stories and violent dramas or in the nightly news. Perhaps this is how we
can deal with it, at a remove. But in some cultures death is a healthier
presence, as in the Mexican celebration of the dead, All Saints' Day, where
the dead are honored in wakelike abundance.
     Denying death, which is a natural part of living, is as destructive as
denying grief. In the United States alone, some 2.4 million people die each
year; they are the top of an ever-widening pyramid as additional millions
of friends and family remain behind to grieve. And, as I found out, to face
illness, death, and grieving without guidelines or help can be perilous.
     It has been said that teachers teach what they most need to learn.
Perhaps writers write about what they most need to learn. I fell apart in
my grief, unable to find the fierce concentration needed to complete a
book, not knowing that there were people out there who could help me, not
fathoming why I was so unable to function, not understanding why the
arsenal of bromides from well-meaning friends and acquaintances offended
me, especially as I realized I too had been just as guilty as they. Those
same stumbling, helpless mumbles had come forth when I had tried to console
grieving friends in the days before I had felt its full weight myself: "You
had her a long time," "You're lucky that you were not young; when my mother
died I was in my thirties ...," "At least she didn't suffer." All I could
think of was that they had no understanding of how I felt. Nor of the
loneliness that comes with the relative indifference an adult child faces
with the "expected" loss of an elderly parent. To me, the most insensitive
of platitudes is the one so popularized by President Clinton--"I feel your
pain"--followed by "I understand how you feel." One can empathize, but no
one can understand what another is feeling in times of desolation and
grief.
     At the same time, my children were trying to cope with a different
face of death--the long-term illness of their father, my ex-husband, Morrie
Siegel. "It was May 1994 as I stared down at my father, resting in the
hospital," wrote my son, Michael. "Dad's seven-year battle with can-
     cer had brought him to this anesthetized state of recovery twice
before. My father was a sportswriter. He had been in the business for over
fifty years. His most memorable assignment remained the night he covered
Rocky Marciano's victory over Jersey Joe Walcott to retain the world
heavyweight boxing title at Philadelphia's Shibe Park in 1962. My most
memorable moment with him remains the week I watched as he recovered from
six hours of surgery at Washington's Georgetown University Hospital in
November 1989. The operation was a success, but my life changed forever
that day, at the age of twenty-two. I realized that I had a limited amount
of time to be all I could be to my father.
     "Now I want to seal away every detail of these past seven years. Not
that I hope to pass them on as anecdotes to my children, family, or
friends. Hospital stories would hardly do justice to him. Dad, like most
people, hated hospitals and although his grace and wit distinguished him
from most of the cancer patients I met, his life was too large to be
eclipsed by a seven-year illness. Years from now, I am certain he will not
be remembered as a patient. But his hospital days will always be important
to me. Important because, above all else, these stays gave me a chance
to see the private side of a man who lived to be public." Morrie died a few
days later.
     The twenty-nine-year-old son was a picture of grace and eloquence
later at a memorial service large on laughter, merciful laughter, as one
story after another rolled off the tongues of Morrie's buddies--satirist
Mark Russell; the Washington Post's Ben Bradlee; Morrie's mentor, Shirley
Povich; The Palm restaurateur Tommy Jacomo; Washington Post sports editor,
George Solomon. The synagogue rocked with laughter as on flowed the stories
about bookmakers and card sharks, of sportswriting in the days when it was
a quirky art, stories certainly never heard in a synagogue before--a fact
that registered in the eyebrows of the cantor as they rose sharply as each
testifier seemed bent on topping the other.
     At the end, it was my son's turn: "Dad battled the odds with courage
and a selfless grace many of us will never know. ... Dad has left us all
with endless memories and an eternal friendship. He also gave me and my
sister something that we will carry with pride for the rest of our
lives--and that is that we are Morrie Siegel's children."
     All too soon the support that comes immediately following a death
fades into the realities of everyday life, although for the survivors, that
is when depression and mourning really take hold. My children and I
learned, as have all too many of us, that grieving involves many complex
emotions --among them anger, guilt, relief, sadness, anxiety, depression,
and loneliness. The feeling that nobody understands heightens one's
isolation. Few of my son's friends, for example, had shared his experience
of losing a father. My daughter had a less complicated relationship with
her father and also a less complicated grief. She also had had more
experience with death, having worked at a home for AIDS victims. I fell
into the category of disenfranchised grief. I was an "adult child" in my
fifties when my mother died, and I came under the heading of
"developmentally expected loss." Translating the jargon, this meant "At
your age it shouldn't be so difficult." But it can be terribly difficult
for us who, as one friend said, "found myself an orphan at age
sixty-three." Yet our grief is treated with relative indifference. Adult
children themselves tend to fight their own deep emotions when it comes
to an expected loss. "My mother is dying--she's ninety-five --that's what
she's supposed to do," said a friend of mine, Ginny Thornburgh. "So why am
I feeling so terrible?" I helped her recognize what I had to be
taught--that the loss of a long, close relationship can be as unsettling as
an earlier death of a parent.
     I joined the disenfranchised again when I grieved for my ex-husband
and memories past, even though I was happily remarried. The former spouse,
the lover, the good friend, the business colleague, very young children,
distant relatives--all are among those seldom considered as socially
accepted deep grievers. Yet who is to say that the loss for these people is
any less heartbreaking than that of the immediate family?
     In such shattering times, it is important to remember that there is no
one way--and no "correct" way--to grieve. Emotional expression may not be
your style, or you may collapse in tears for months or years at some
remembrance. You may retreat or you may race back to work; you may seek
frenetic activity or champion a cause to honor the dead. Because it is your
grief, it is happening for the first time, it is the hardest time, the most
searing. Give yourself permission to grieve the way you want to and for as
long, or as short, as you need and not be driven by
     friends and family who urge you to "get on with life" or to "get over
it." Grief is a process, not an obstacle course to "get over."
     Grief can be disorienting--judgment, thinking, coherent action,
concentration can vanish, and grievers can think they are going crazy. One
can drive a car and forget where one is going, conversations can blur in an
instant, nothing can be retained. The diagnostic manual of the American
Psychiatric Association now agrees that "thinking that [a survivor] hears
the voice of or transiently sees the image of the deceased person" is not
abnormal grieving. This can come in the form of astonishingly real dreams
or premonitions, including uncanny knowledge of the exact time of death.
     Physically, grief can cause stomachaches, headaches, arms that ache
for a loved one, and serious illnesses. One woman, living through
anticipatory grief when her father was diagnosed with cancer, ground her
teeth so much that she deadened the nerve in a tooth and had to have a root
canal operation. When a spouse dies, the losses are great at any age--not
only the intense loneliness of losing one's closest companion but such
secondary losses as social and/or financial support and a defined role in
the community. The hole in one's heart when a child dies is immeasurable.
     In our culture, however, where people race from meeting to meeting,
zap the instant E-mail, everything and every emotion has the shelf life of
fresh shrimp. We are not kind to grievers. We expect drive-through
grieving--as if one's feelings can be deposited at a window with efficient
haste like one deposits checks in the drive-through lane of a bank. Many
people do not recognize, for example, that grieving begins at the moment of
diagnosis. Even if one gets better or beats the odds, the precariousness of
life is there, a knowledge that, paradoxically, often coincides with a
heightened appreciation of life and living for each moment.
     We are used to thinking of mortality as the province of the aged, but
it strikes children and adolescents and the middle aged, rich and poor,
good and bad. One hundred years ago, the death of a child was a terrifying
probability. Then came the wonders of vaccines and sanitation, and a child
dying before a parent became considered as a horrible, unnatural
occurrence. Unfortunately, this cannot be said today. The AIDS pandemic,
for one, has changed the equation enormously as
     entire countries, families, and friends bear witness to a young
generation annihilated the world over. A man in Key West told me, "I've
just turned forty--and I have been to seventy-five funerals. I've stopped
counting." Pain borne when children die is for many parents heartbreakingly
unavoidable; gunshot wounds are the second leading cause of death for
adolescents aged seventeen to twenty-five, following vehicular deaths.
Adolescence is a peak period for suicides, while cancer and other illnesses
claim them even younger. In the same month last year, two couples I know
lost their sons--one to a long battle with cancer, the other in a bizarre
accident.
     My involvement with illness, end-of-life issues, and bereavement
coincided with a cataclysmic, volatile time of exploration. Both
overtreatment (technical measures) and undertreatment (not providing
pain-free care) were under attack. Living wills became talk-show fare; one
television participant revealed the lengths she went to in order to make
her wishes understood--her living will was tattooed on her stomach.
Rebellion surfaced in citizens who tired of the horrors of HMO'S and
insurance companies, hospitals where 180,000 people died annually from
errors, the medical profession's indifference to humane pain management.
Everything from AIDS quilts to the Kevorkian battle awakened a nation
to the need to honor both the dying and the bereaved, and spawned the
question, Who's death is it anyway? In 1997, Oregon's voters pushed us
into a new stage of medical ethics; it became the first state to uphold an
assisted suicide law. The fierce debate prompted deep examination of
end-of-life alternatives. As a result, Oregon leads the country in at-home
hospice care as opposed to hospitals for the dying. Assisted dying, in my
opinion, is a far more accurate description.
     Studies indicate that the vast majority of Americans--90 percent--wish
to die at home, but most die in hospitals. A burgeoning movement toward
hospice--where the goal is to have patients die at home with pain-free
palliative care--is changing those odds. Of the 2.4 million who died in the
United States in 1996, nearly half a million died in hospice care--a fair
number if one rules out those deaths that would not fall into hospice
categories: homicides; auto accidents; suicides; and deaths resulting from
short, acute illnesses or accidents; or for those who
     live alone. A longing to return to spiritual and emotional succor
for the dying has been the backbone of the 3,000-member Association for
Death Education and Counseling (Adec), comprised of social workers and
sociologists, psychiatrists and psychologists, doctors and hospice leaders
throughout the world. Courses are now taught that are aimed at changing
American attitudes on death and dying. A vivid example of personal sorrow
turned positive is financier philanthropist George Soros, who set aside $15
million of his institute's money for Project Death in America following his
experience with the death of his mother. The medical profession has been
forced to police itself with committees that expose drastic deficiencies
and offer solutions in the education, training, and performance of doctors,
nurses, and other medical personnel in humane end-of-life practices.
     A shockingly small amount of time is spent in med school on how
to deal with patients, which should be a prominent part of the curriculum.
Says Dr. William Lamers, an internationally known hospice doctor, "There is
much we doctors could do to ease the pain, the anxieties, and concerns of
dying persons and their families." Like many young medical professionals,
Mary Jo Devine, a Washington, D.c., nurse, was rebelling against the
inhumane warehousing of the dying in many hospitals. "A hospital nurse is
not able to have an emotional connection with patients," she remarked. "The
most I'm able to spend with a patient is thirty minutes before they're
gone." She was taking courses on bereavement. "I hope to balance this out
and provide the emotional connection missing in my work. To be more
"natural" in dealing with emotionally charged situations. For example, my
roommate's father died. We haven't even spoken about it!"
     When my husband became the president of the Hospice Foundation of
America and I later began my book, I said that we would be the two most
unpopular people at any party. Not so. People who had never talked about
anything more personal than the president's budget began revealing their
own encounters with death--family suicides, losing parents and children
to accidents and illness, and a desire to express their hospice experiences
and how to get through mourning. Try bringing up the subject. You may find
a level of rewarding communication. A sign of changing times was the public
display of understanding the Knicks
     coach and teammates showed for the player John Starks, whose
performance suffered the effects of his grieving for the beloved
grandmother who raised him, as she lay dying in the final stages of cancer
in 1998. During his slump, said one teammate, "We're all for him. She means
a lot to him." *1 Perhaps the final days of the twentieth century may
become known as a time when death was allowed to come out of the closet.
     Along the way, I made the decision to tell the story of one
family--to explore their interior lives, hopes, dreams, and fears in all
its richness--rather than recite disjointed and disembodied case histories
to prove a point. In my random search, I was given an inexpressible gift. I
found Anna and Jan Johannessen and their circle of family and friends, with
whom I spent more than two years. Like one-third of all Americans, the
Johannessens are part of the baby-boom generation who are now facing their
own or their friends' illnesses and deaths as well as that of their
parents. I had not thought of writing about a specific disease. The wounds
are as deep for a family coping with any illness, dying, and bereavement.
Given that three out of four families will be touched by cancer and that
breast cancer is the number one killer of women between the ages of
thirty-five and fifty-four, however, it was not surprising that I found
Anna, who faced the fear that all women face. *2 But what is amazing was
this magical woman, her family, and those who cared for her.
     Hers is an intimate story of coping writ large, a personal tale woven
into a larger mosaic of the universal concerns of us all--living and
loving, dying and death, family tragedies and joys, dealing with children
in positive ways when the news is so bad, grief and learning to live again.
Anna's story is uplifting in its humor and compassion, its wisdom and its
caring. She teaches us all how to live out loud.
     Dr. Kenneth Doka opens speeches with a line that ensures immediate
attention: "I know how you are all going to die." He then goes on to say
that most of us will die as we live. If you are a crank and a grouse,
thinking only of yourself, that's probably how you will go. One can hope
that being forearmed is being forewarned. Anna always said she was just an
ordinary person. In the world of instant celebrity hype, the jillion-dollar
basketball star, the latest microtalent out of Hollywood, perhaps she was
right. But in the ways that matter, Anna was extraordinary--and she
     was not alone. Her story, an exaltation of the human spirit in
adversity, is replicated daily throughout this land. Beyond the klieg
lights are ordinary people just like Anna, whose lives are founded on
courage and compassion, determination and dreams, humor and humanity.
     Well, maybe not just like Anna. No one could be just like Anna. She
remains one of the greatest gifts of my lifetime. It is my privilege
to pass that gift on to you.
     June 1998
     Part I 26-27
     A Charmed Life
     Those who bring sunshine to others cannot keep it from themselves.
     Sir James Barrie
     CHAPTER ONE
     Meeting Anna
     October 18, 1995 She is in the front yard, halfway up from the
mailbox, in active combat with two restless five-month-old puppies. Part
Akita and part retriever, they look as unalike as their mixed parentage
could fashion: Peaches is ginger colored with long hair and curled-up tail;
Cream is black and white. They are united in their passion to disobey.
Somehow she thinks she can also look at the envelopes she has retrieved
from the mailbox as she tugs her way up the lawn toward the front door. In
her sweatshirt and jeans, with small diamond studs in each pierced ear, she
could be an androgynous teenager, making a statement. Her head is
completely bald. Up close, however, one sees the fine features of a woman
who looks to be in her midthirties but has just turned forty-three. Smooth,
tanned skin, not even one fine hair on her face. The tops of the black rims
of her glasses fit exactly where eyebrows should be; it takes time
to realize she does not have any.
     "Hi! I'm Anna," she says with a quick grin. "Don't mind me, I just
have to get the puppies in." Intense moments of hauling and tugging ensue.
Finally the puppies are skidded, shoved, and pushed into the kitchen.
"Whewwwww," says Anna. Then the talk begins. Talk, talk, talk. Gatling-gun
energy. "Where do you want to go for lunch? Been out to Olney before? Just
let me get my things and we're outta here." She pats herself, the eternal
mental checklist of us all. "Let's see, keys, wallet ..." Then Anna pats
her head and the right side of her chest as if she has forgotten something
else. "No boob, no hat, what the heck, let's just go."
     She is out the door and through the carport, where a huge and heavy
     yellow aluminum store sign leans against the wall. It says "Happy
Feet," a logo of smiling feet, toes wiggling. Until recently, it beckoned
young children and their parents to Anna's shoe store in a nearby mall. It
is just one of her many careers that she can no longer do. This realization
gnaws away inside, but to the outside world, Anna says little.
     Anna Johannessen, her two children, Lindsay and Ellery, and her
husband, Jan Johannessen (pronounced Yon Yohannessen), live in Olney,
Maryland, a middle- to upper-middle-class suburb of Washington, D.c. There
are rolling hills, a good local theater, malls, of course. Tract houses are
spacious bungalows, softened by oak trees and willows and flower gardens.
Yet behind those doors in suburbs so similar to Olney throughout the United
States, all is not fairy-tale happiness; entire families are mourning the
death or illness of friends or relatives. Some have suffered strokes or
heart attacks or been disabled or killed in automobile accidents. And some
are coping with prolonged anxiety and stalled grief--an in-limbo,
roller-coaster stage, soaring into hope and plunging into despair,
sometimes for months and years--as they endure and bear witness to a family
member's battle with cancer or AIDS or Alzheimer's or emphysema or kidney
or heart failure.
     At this time, Anna is a long-term cancer survivor, but her breast
cancer has spread, an indication that she may die from it. And yet there is
more mirth than mournfulness, more fiery determination than tepid
acceptance. It is the first meeting with the author, a sizing up, a concern
about whether this will work. It is not unlike a first date, except that
two women are talking and before long rapport is set. They talk about the
feminine losses that "no one tells you about when you have cancer and take
chemo." Hair for one. "Do you know the pubic hair goes too?" says Anna.
"I'm barer than my ten-year-old daughter." The lack of libido, pain of
intercourse, eternal hot flashes, excruciating side effects of chemotherapy
are glossed over for now. This is basic to Anna's personality. Only
occasionally does her effervescence fizzle.
     She mostly repeats what is by now an effortless litany, brushing the
surface of her life, medical history, and concerns she feels for herself
and her family. Later she will tell it all, with anguish and humor, tears
and laughter, amazing pragmatism at times and equally amazing moments of
courage. Halfway through lunch, the flow slows down. She emphasizes
     every word, leaning forward. "Every decision you make from the moment
you find out you have cancer ..." She pauses, then speaks with intensity.
"It's all your decision. It's not the doctor's decision. Whether to take
this chemo. Whether to not. Whether to try for a bone marrow transplant.
Whether to not. Whether to get more opinions. Whether to try something new.
That's what is so hard." Anna puts down her sandwich. "I know what I'm
dealing withand I can't change it. That's what is so terrible." Tears well.
"I have my days, believe me."
     In the next breath, optimism reappears. "I am so lucky that my husband
and I are able to absorb the information. My husband is in the biomedical
field [previously at the National Institutes of Mental Health and now at
the Food and Drug Administration]. He is able to ask the questions. I'm so
appreciative that he understands more than ninety-nine percent of the men
out there." Anna later reveals that his knowledge does not help him avoid a
typical male response, silent grieving and an ineptitude at discussing with
her or anybody how he feels about Anna's illness and the uncertainty of
their life.
     Anna howls with laughter when she is shown a cartoon of a man in the
waiting room of a doctor's office, being approached by the nurse, who says,
"The doctor will kill you now." Anna has developed a curdled contempt for
doctors who are unable to provide emotional comfort or to explain medical
situations succinctly, and who, conversely, can badly botch diagnoses. Anna
is no stranger to technical errors--misread X rays and MRI'S and bumbled
reports. Once she even had the wrong rib operated on.
     Anna is like every patient caught in today's world of highly charged
and controversial scientific research. Anxiety collides with hope, often
false hope. Today the intense speculation on genetic factors ignores a
frightening statistic for all women: more than 70 percent of those who
develop breast cancer have no high-risk factors at all, including genetic.
In fact, only 5 to 10 percent of breast cancers are due to heredity. *1
Just being female is a high-risk factor.
     The drumroll of ceaseless scientific studies sounds out new doubts as
well as new hopes. "Being a human guinea pig, not in a program, just out
there in society, can be extremely frustrating. Take tamoxifen--which I
took for nearly five years. Now they're saying that it's dangerous to take
     this "wonder drug" for any longer than that!" The most widely used
estrogen blocker to help prevent the recurrence of cancer, tamoxifen was
used by more than 1 million women in 1995, an estimated 20 percent of whom
had been on the drug for more than five years. Anna was referring to the
National Cancer Institute (Nci) "clinical alert" sent just that month
to cancer physicians--only the fourth time the institute has issued such an
alert--advising that tamoxifen should not be taken for any longer than five
years. Females by the thousands were thrown into panic after studies showed
a trend toward higher death rates in women whose use exceeded that period.
*2 "The only reason I stopped," says Anna dryly, "is that my cancer had
already come back."
     Despite positive advances in treatment to prolong the lives of people
with cancer, AIDS, and other diseases, the sad but unassailable truth is
that some people will fall into the percentile of those for whom the
results are not favorable. Even if there were but a 5 percent chance of an
illness recurring, someone has to be among that 5 percent. Unfortunately,
doctors cannot divine who will win out and who won't.
     Anna had a mammogram early because her sister had breast cancer. A
benign fibroid tumor was found in Anna's right breast. A year and a half
later, another lump was biopsied. This time, the doctor told Anna, "I don't
know what to say. It's cancer."
     Anna leans forward. "This was the hardest thing a human being can go
through. When they told me I had cancer, it was so terrible." Her eyes fill
with tears.
     Her right breast was cut away. Anna was thirty-seven. Her son, Ellery,
was five; her daughter, Lindsay, had just turned four.
     The mood changes abruptly as Anna looks at her watch. "Oh, my God, I'm
late to pick up Lindsay." In her maroon Chevy blazer, Anna talks about her
various careers. She has taught high school English and drama, performed in
local theatrical productions, served as creative media director for major
companies, owned the children's shoe store. Anna held down two jobs
following her mastectomy, while the children were growing from toddlers
to preteens. "Now," says Anna, as she approaches Lindsay's school, "I'm
using my energies to be with the family." The laugh is filled with some
regret. "I am now "gracefully" accepting that."
     A lot of anger grows within this stage, however, often called
anticipatory grief, a term more misunderstood than not. It is not only a
stage in which one anticipates a final grief. It concerns the daily anger
and grief that comes with unwanted change, with loss of control, with
having to accept limitations that for someone like Anna would have been
unheard of a year ago. Anna will mourn her loss of a career for many
months.
     "One of my friends said, "Anna, you're somebody who used to go at the
speed of light. Now you're finally going at the pace of everyone else.""
     Anna spots her daughter, the tallest in a cluster of talking girls.
Lindsay separates herself from the pack and heads for the car. She has
arresting features, large eyes, a wide mouth, all framed in a cascade of
chestnut hair, so long she can sit on it. She looks much older than ten.
     "Hi, honey!"
     "Hi, Mom." They talk easily. "Hey, Ma-om, I'm gonna be late for
ballet!" "No you're not," says Anna, coolly ignoring the complaint in
Lindsay's voice. "We'll go home, walk the dogs quickly, grab your things,
and go." Lindsay calms down. In a matter of minutes, Anna pulls up to their
brick bungalow and parks in the driveway. They walk into the carport, past
the Happy Feet sign, and as Anna opens the side door into the kitchen, all
is madness as they try to keep the puppies from bolting out.
     It is a cold evening, January 28, 1997--1 year and three months after
Anna began recording her life in October of 1995. Jan and Anna are now
forty-four. Anna sits in the rounded corner of their living room sectional.
"Would you look at this?" she says in disgust, running her hand over her
hair, removing it in tufts. For many weeks, Anna had a "drug holiday," her
term for no chemotherapy, and a glorious Anna with a wide smile and lush
black hair was captured in stunning photos by a photographer friend and
cancer patient, Linda Suarez. Now she is back on chemo and is shedding like
a Saint Bernard in August. "Ya better get pictures fast," she cracks. "I'm
really having a bad hair day." Joking with Lindsay, Anna shakes her head
over her homework. "Oh, gross," says Lindsay, laughing as she brushes off
the falling hair. "We're buzzing this head!" says Anna, talking to her
daughter as if she were one of her friends. "Oh, God, I woke up this
morning and turned my head and got a mouthful of hair, yuck."
     The dogs set up a mighty howl when the pizza man comes with his
delivery. Munching his pizza on the couch, Jan launches into his day, an
interesting experiment with rats at the Food and Drug Administration, and
Anna makes jokes about his "rat world." Then she leans over and calls Jan
by her pet name. "Nilsie [for his middle name Nils], can't you shave my
head tonight? Please? I can't stand it falling out all over the place. I
had to clean the shower drain out three times it was so clogged this
morning. Honestly. I'll feel much better."
     Soon the night has a name, the "Beer, Pizza, and Head-Shaving Party."
Anna drags out a kitchen chair and centers it in the kitchen on the
yellow-and-white vinyl floor. Jan brings in a towel and long shears, the
kind used to shear lab animals. Very tenderly, Jan starts up the back of
Anna's head. Knowing that this is difficult for Anna, no matter how much
she jokes, Jan remarks gently, "You look cute with a bald head." When he
finishes, Jan softly rubs it and bends down to quietly give her a kiss on
the top of her head. Anna's snapping dark eyes glow as she looks at him.
And Jan smiles, locking his eyes with hers.
     Then she is on a search for the wigs she bought years ago, when
chemotherapy followed her mastectomy. They are crushed under books on a
shelf in her bedroom. "These suckers are just too damn hot and
uncomfortable to wear." They look terrible and unnatural on her, except the
short one. Anna pokes and pushes and pats hard to press this wig down on
the sides and sits on the sofa, giggling. "Let's see if Lindsay notices."
Jan has gone to pick up Lindsay from ballet class. She is now eleven and is
five feet four inches and walks with a dancer's grace. Jan enters the room
first, and Anna whispers, "Don't tell Lindsay." Jan says, "I already did."
Anna makes a face, but when Lindsay rounds the corner, she stares at her
mother for a second and says, "I thought Dad shaved it off!" Then she sees
it's the wig. Anna yanks it off her head--"Ta-da!"--throws it to her
daughter, who laughs loudly along with her.
     On another day, Anna reflects on Jan's reaction to her cancer. "I know
that I physically would drive most men away in quiet yet guilty disgust.
But I smile and look at Jan and know I have the best marriage there is.
This man loves me because of who I am. The fact that he has seen me get fat
from medication, bear a huge scar on my right side, with only one left
breast now dangling, lose my raven tresses and become totally
     hairless all over my body, hobble along daily from permanent nerve
damage to my feet and legs, and, despite all of this, still adores me is
more than most people can claim as a test of their love and commitment
to marriage. And after several years of chemotherapy, I have become
essentially a sexual nothing, but Nils doesn't care. We used to love it,
but he assures me that priorities have changed. I've even said he could
find someone for sex, but he says that's not important. He just wants me
around. He knows we are both losing certain former aspects of our marriage
that were important at the time, but now we both cherish other
aspects--being together, sharing a sunny day, laughing over a funny cartoon
in the newspaper, getting a good report from the doctor, taking a walk hand
in hand. This is our love."
     For many women, the mutilation of their bodies causes traumatic
grieving. "I have met too many women whose husbands were uncomfortable and
ashamed by the scars and physical damage from their disease. These men
demanded that their wives endure more physical suffering to "grow another
boob through surgery," to make them look "normal." I don't know that the
women, themselves, wanted to go through more surgery, but they did for the
sake of their husbands. Nils just wanted me. Me, alive, as I was and as I
was comfortable being."
     For the past few months, Anna's life has revolved around the curved
center of her cream leather sectional, phone at hand, pale blue-and-white
plaid blanket draped over her sweatpants and sweatshirt. One afternoon,
Anna's deep-throated laugh echoes as she talks with friends on the phone.
She clucks in shared misery for a friend who has to have a root canal
operation, another whose mother is diabetic and still eats sweets. Anna
sympathizes with her angry friend; if the mother doesn't stop, gangrene
could set in. Anna expounds on the selfishness and stubbornness of some who
are seriously ill, thus becoming burdens upon their families and friends.
     Anna waves at Lindsay, who comes home from school and sits
cross-legged in the blue chair by the window across from the sofa, doing
math homework, listening to her mom's conversations, which are blunt,
direct, and honest. When Anna hangs up, she goes over to hug Lindsay.
Ellery, now twelve, comes home, so tired that he walks robotlike. Ellery
     is in a magnet school where he takes accelerated courses that include
eighth- and even ninth-grade math--complicated, time-consuming work. He has
a major midsemester math test tomorrow plus "so much homework, I don't know
where to start." Anna is in the bedroom floating on the hunter green sea
of a down comforter. Ellery leans against his mother and she puts her arm
around his waist. Ellery's growth spurts have been phenomenal; now at five
feet seven inches, he takes great pleasure in calling his mother Shorty.
"Can we have pizza to help study for my test?"
     "No, we're having chicken. I already took it out from the freezer
to defrost." Then Anna brightens as if she has just thought of the most
exciting plan in the world. "How 'bout we'll have pizza tomorrow night
to celebrate having finished your test?"
     Anna has sensed her son's panic, his overwhelming sense of defeat and
hopelessness about the looming test and an avalanche of homework. "You know
more than you think you do about your math. Why don't you start with the
math problems and see how that goes? That'll give you a head start on the
test. Get some food first." Lindsay pokes her head around the corner. "Who
is the Jell-O pudding for?"
     "You guys can have it." Lindsay grins and heads for the refrigerator,
then returns to poke her head into the bedroom again and say hesitantly,
"There'll only be one left after we take two, is that okay?" Her children
are extra solicitous about Anna these days, aware of how little she feels
like eating. "Sure, honey," Anna reassures her.
     The Johannessens are living a life of abnormal normalcy and it is hard
to fathom how they can function so well, and yet this is a life lived, with
varying degrees of success, by hundreds of thousands daily in a world where
medical advances have made prolonged illness common. The daily minutiae
continues, except for knifelike moments of panic or sorrow or pain;
groceries to buy, dinners to fix, dogs to walk, laundry and homework and
house repairs to do, bills to pay, school and jobs to attend, PTA and
school athletics and ballet. Abnormal normalcy.
     There are moments of laughter--vacation, video games or movies on TV,
reading, eating pizza in the downstairs rec room by the fireplace. And yet,
there are certain books, tossed on the piano--What You Need
     to Know About Breast Cancer--and in the bedroom, hidden in a manila
envelope--Dying Well. And when the children are asleep, Anna and Jan hold
each other in bed, thinking thoughts that Anna has become comfortable with
but that Jan would rather avoid. Anna won't let him, insisting that he face
a very possible reality. One night, Anna asks Jan to prepare for a possible
future without her by asking, "What do you think life would be like without
me?"
     Tears course down Jan's cheek and he can only choke out a one-word
sentence-- "Difficult."
     CHAPTER TWO
     Starting Out
     When people experience prolonged or life-threatening illness, writing
or videotaping their lives and reflections can provide a catharsis and give
meaning to their existence. This taking stock, reviewing family history,
reliving the best of times, provides a comforting sense that they are
imbuing their loved ones with a part of themselves and leaving something
for posterity. (this process of recording one's thoughts and remembrances
of loved ones is also recommended for the bereaved.) Over the months, Anna
eagerly delves into her life, in writing and in conversations.
     Anna Margaret Megregian, born in Washington, D.c., on October 2, 1952,
began life seeking attention. Her first memory: "I would sit at the top
of the stairs and cry, working my con job. Somebody would come up and say,
"Oooh, what's the matter, honey?"' And I got what I wanted. Until the day
my dad caught on, came up, and paddled my rump instead. That ended my
stair-warming nights."
     Boys and girls were equally drawn to Anna-- the tomboy who swung on
tree vines and played male roles in backyard theatrics, the teenager who
lied to school officials that she had not been drinking, in order
to protect the other girls, the high school actress who carried a live pig
onstage as Moonbeam McSwine in Li'l Abner, the gifted musician who turned
down a scholarship to the Eastman Academy of Music in order to live a more
normal life.
     "Anna spelled trouble--very aggressive and into everything," says her
sister, Roseann, twelve years older. "But she was very creative and always
very bubbly. She's very much like our aunt, who was a character." Anna
     inherited her aunt's mischievous spirit, which included storming in
every Thanksgiving dressed in turkey feathers. When Anna had to clean the
kitchen in the bakery where she worked one summer, she and a girlfriend
would throw stale pies and cakes on the walls and, like culinary Jackson
Pollocks, watch the dripping collage of blueberry, strawberry, lemon,
chocolate. Then they would clean up to spotless perfection. Later, when
Anna became a top advertising executive, she and a friend designed a huge
three-foot birthday card for her female boss. "One of the words of our poem
on the card was "b"' and I couldn't resist." The letter B on her card
became a huge photocopied rear end, turned sideways. "We screamed with
laughter as I sat buck naked on the Xerox machine." Some would stare at the
B on the well-circulated card, but no one guessed at Anna's contribution.
     Anna's favorite topic is Jan, her lifelong love. Anna was sixteen when
she met Johannessen--"a very cute French horn player with wire-rimmed
glasses, a wonderful laugh and brilliant wit, and his own way of doing
things. He was a quiet nonconformist who was systematically late by five
minutes every day for school." "Sparkling" is the adjective that came
to Jan's mind when he first saw Anna, possessed of whirlwind energy, a wide
smile, a quick laugh, and dark hair that cascaded down to her waist. They
played in the band and as they marched on the field one autumn afternoon,
the sun glinted on her hair. "It sparkled, like her personality."
     Anna was curious about Jan before she met him. The whole school was
talking about the new student who had gotten into trouble for wearing
shorts to school. Jan and Anna were coming of age during the Vietnam War
and although youthful rebellion had toppled establishment rituals
everywhere, their suburban school still clung to dress codes. Jan had the
full support of his mother, born and reared in England where shorts were
the norm, and continued to wear shorts. Soon others followed. Anna laughs.
"Jan was clueless that he'd started a fashion trend." Anna, who thrived on
the offbeat, made it a point to meet Jan. In the fall of 1995, as they
reflect on their long life together, Jan, forty-two, still looks like the
round-faced boy of sixteen; a guileless smile reveals dimples, his sandy
hair is thick, his five-foot-seven-inch frame is slender despite a slight
adult spread.
     Unlike most high school romances, the instant click between Jan and
     Anna has lasted a lifetime. Anna remembers their first date--"We saw
Butch Cassidy and the Sundance Kid--our first kiss! From that point, we
were hooked. I never questioned whether I loved him or how much, all those
weird questions one asks oneself when delving into a serious relationship.
I knew that this was for life. I had found my soul mate." Jan nods
agreement. "Jan and I are and have always been profoundly happy," Anna says
with unwavering certitude. "Oh, there have been times of boredom, of
curiosity about others, but I could never imagine us apart."
     Anna fervently says yes to life. In a list of clich`es regarding
optimism versus pessimism, Anna wins: the bottle is always half full not
half empty; she always finds the pony. Her lightning enthusiasms and
passions have an intensity all but lost in adults. Methodical Jan
complements her. On the surface, they are opposites--Anna the impulsive
up-for-fun character, Jan the solid rock. She wanted high drama. He chose
science. Yet looks can deceive. Anna is the disciplined, organized spark
plug. Jan is the ivory-tower dreamer. Beneath the surface, they are guided
by the same principles--to live an honest life, deep commitment to work,
and devotion to friends and family.
     Remarkable childhood similarities shaped and defined Jan and Anna.
They were like two army brats, endlessly uprooted in childhood. Both
learned early about loss--Anna often sobbing undying fidelity to pals as
she moved on again and again. Yet they also found strength in their
adaptability and an easy ability to make friends. By the time they met,
Anna had lived in six cities and four states as the family followed her
father's career as a government expert in water pollution. Jan had lived in
four cities in three states until his meteorologist father returned
to Washington as President Lyndon Johnson's deputy director of the National
Weather Service.
     Both reaped the benefits of being the youngest of four siblings. As
babies, they were adored. As adolescents, they were reared with more ease
and freedom than their brothers and sisters. This helped Anna and Jan
to grow into secure, happy, contented adults. "We were very strict when we
first came to this country," recalls Jan's mother, Phoebe, "but the
American way rubbed off on us. Nils got away with murder!" Anna was known
as the "wild one" in her family, with an impish need to rebel.
     Although their families came from different parts of the world, Anna
     and Jan also shared exotic backgrounds; three out of four parents
immigrated to the United States.
     The Johannessen story unfolds in Anna and Jan's home the day after
Thanksgiving, 1995. The scene is a modern-day version of Currier and Ives,
Hans Christian Andersen, and Norman Rockwell rolled into one. Anna's
in-laws are visiting from their home on an island off Seattle. Jan and his
seventy-eight-year-old father, Jo, are in the backyard, chopping wood. Snow
mists the ground and their breath frosts the air. Tea steams on the stove
and turkey bones simmer into a rich broth for soup.
     Phoebe, a tanned, stunning woman, with a button nose, deep blue eyes,
and short snow white hair, curls up in a corner of the sectional. At
seventy-three, the former ballet instructor carries herself like a woman
years younger. Artistic talent runs in the Johannessen family and Anna's
house is filled with impressive paintings by Phoebe; her brother, John; and
Jan's sister, Sissel.
     Jan's Norwegian father was a student at Oslo University and when the
Nazis invaded Norway in 1940, Johannessen literally skied to safety, with
help from friends in the underground who hid him on his way until he
reached the Swedish border. Short and burly, Jo still carries himself like
a former athlete as he comes in from the cold, peeling off his jacket and
joining the family for tea. There is a resemblance to his son. With
thinning hair, turned silver, close cut, he looks something like the actor
E. G. Marshall, ruddy faced, a pleasant twinkle in his eye, but a
no-nonsense reserve and formality. A slight accent remains.
     The courtship of Johannessen and Phoebe Frith was filled with the
romance and tumult of war-torn England, where they were stationed, plotting
the weather's course for British Air Force maneuvers, including the
invasion of D day. "Phoebe was a sergeant," Jo says with a smile. "But you
outranked me," says Phoebe, laughing. As a meteorologist and member of the
Norwegian air force working in Sweden, Jo was soon on loan to the British
air force and became an instant attraction when he entered England's
meteorology headquarters. "Here was this good-looking Norwegian in our
midst and all the girls were after him--and I got him." Phoebe's laugh
bubbles over.
     They married at war's end. Phoebe's eldest was born in England.
     Then they settled in Norway, where two more children were born, and
moved to Washington in 1951, when Jo was hired by the U.s. government
weather service. Jan was born four months after Anna, in January of 1953.
     "I had a charmed childhood," says Jan. "I had lots and lots of
friends, especially in O'Fallon, Illinois, where we moved after Chicago,
where I was a toddler." For six years, Jan's life was proscribed
by small-town pleasures. "Now you hear about kids knifing each other on
playgrounds. I can't remember even one fistfight at school." In summer, Jan
would be gone from sunup until dinner; his mother never knew where he was
but never worried. Phoebe loved her ballet studio there, teaching her
daughters and on occasion dragooning Jan onstage. She says, "Nils was the
lead in The Emperor's New Clothes, and he marched in his underwear quite
undeterred." Anna loves the picture of Jan, then six, standing in imperial
splendor in braided jacket and black tights. "I was forced out by peer
pressure," says Jan with a laugh.
     Religion played no important part in either the Megregian or the
Johannessen household. "In O'Fallon, we lived just down from a church and
so I got packed off to Sunday school, probably because we were new in town
and our parents wanted to make a good showing," says Jan. "I got bored
to tears with that, so it didn't last long."
     At the end of the sixth grade, the family moved again and Jan spent
his preteen years in Freeport, Long Island, loving independent pursuits,
often heading out to Jones Beach by himself in an old aluminum fishing
boat. When Jan's father joined the National Weather Service, and they moved
back to Washington, D.c., Jan went to the same junior high school where his
son now attends an accelerated magnet program. On parents night, Jan found
his science class, frozen in time. "I dragged Anna in and made her sit in
my old seat."
     Jan's parents knew Anna as one of the crowd that hung around the
house. Anna must have seemed like a tornado in their midst. "She was a bit
loud," remembers Phoebe with a laugh. "The girls seemed to be chasing Nils,
but Anna was it for him. Anna had a much more open family life. The English
are all very uptight. She's able to express herself to everybody about what
she feels, and I think that's just so great. I wish I could do that." A
fondness grew between Anna and Phoebe. "Anna is truly remarkable," she
says. "The marriage has been a huge success."
     Her sad face indicates that she has allowed the present to intrude in
her reverie. Anna manages a duality--she lives with considerable
contentment in the present yet refuses to deceive anyone about the
progression of her illness. Such direct, open communication is applauded
by experts who study prolonged illness and dying. "I do not know how Anna
does it," her mother-in-law remarks. "She really is a philosopher. She
faces the facts and says, "This is how it is," and then goes on, as if she
has the flu! I so admire the way she has been so open with Ellery and
Lindsay, telling them everything about her treatment, what's happening. She
is so "right there." It is so hard for us to be like that. I can't
understand how anybody can have that much courage!" continues Phoebe.
"She's so positive and drags everybody along with her. You can't be
depressed around Anna. I'm sure she has her moments--when my children were
at the beach with her, they all had a little cry--but apart from that,
she's just amazing."
     Anna has confided some of her concerns to Phoebe. "She has talked
quite a lot to Nils about what he should do. She's worried that he would
just get too much involved with work and the frightfully busy job of caring
for the kids to have any fun. He's not a person who goes out and seeks
other people's company and goes to parties and things; it's Anna who does
that. So she has instructed her friends to bug him a bit."
     How does Phoebe handle this terrible time? There is a pause. "I just
try to hold on to Anna's spirit. She makes it easy for all of us." Still,
the horrible possibility of her son being alone "concerns me greatly. They
are so intertwined and Anna is so incredibly vibrant that Nils's life would
be a hollow shell compared to what it is."
     An attempt to talk to Jan's father about Anna illustrates the
Johannessen reluctance to express personal feelings; he offers few
comments. Anna laughs heartily. "That's so typical. When we told him we
were going to get married, he just said, "Oh."" Anna imitates the
absentminded nod of the head, as if they had just said they were going
to the movies. "That's Jo."
     Anna and Jo have tangled more than once. "They are both very forceful
personalities," says Phoebe. "Anna is very sure of herself when she
believes in something--and so is Jo," she says, indicating that neither is
quick to back down. Jan says he never felt the need to interfere with Anna
and Jo. "Anna can take care of herself. In families, everybody has trouble
     getting along with someone, at one time or another. But Dad has great
respect for Anna, certainly as much, if not more, than for his kids and
other in-laws. He always sees her as pragmatic, business-minded, and
aggressive; to an immigrant, that kind of "can do" get-up-and-go is very
important."
     That same "can do" spirit made it possible for Anna to exist. Her
grandparents grew up in Armenian enclaves, had arranged marriages, and
lived with the specter of mass murder by the Turks. Anna's father, Stephen,
was six years old when he heard his widowed mother talking fearfully with
her friends about a Turkish invasion in their beautiful seacoast town of
Izmir, south of Istanbul. She and Stephen and his three-year-old brother
quickly set sail for the United States. "I just marvel at the guts those
people had," says Stephen. "My mother travels eight thousand miles with two
little kids to a country where the only soul she knows is a sister." Such
fierce survival instincts perpetuated Anna's lineage. Stephen says, "I was
the lucky recipient, believe me." The lives of Anna's grandparents and
parents were a mixture of Old Country edicts and customs and the hustling
modernity of Detroit, the car capital of the world.
     Now, seventy-five years later, in January 1996, Anna's
eighty-one-year-old father nestles into his favorite leather chair in his
home in Cocoa Beach, Florida, and talks about their escape as if it were
yesterday. His mother had come from wealth, was well educated, knew French,
Turkish, and Greek, besides Armenian. None of these languages helped her,
however, when she was robbed of everything she owned in the sleeping car
from New York to Detroit. Her son woke up to her screaming in every
language but English. All that was left of the money she had saved, their
papers, and her jewelry were two 24-karat-gold bracelets. Those delicately
woven bracelets, worn by their grandmother that fateful night, are
cherished possessions of Anna and Roseann.
     Anna walks through the room and her father's deep brown eyes, so like
Anna's, light up. His smile is kind in his craggy tanned face, even though
he is seldom free of the pain of a crippling back injury. He is expressive,
volatile, and intense as he brags about Anna. "I love all my kids, but
there's nobody like Anna for exuberance, zip, always on the go, challenging
people all the time." Anna's formative years included the urban (chicago)
and the bucolic (ames, Iowa--where Anna was first viewed as
     a wild "Chicago gangster"). Once Anna's willful teenage years were
over, Anna's rapport with her father became total. "Dad had a philosophy
that after we became adults, which was about eighteen in his mind, he would
give us advice only when we solicited it. I have so much respect for him
for that. When I really wanted to, I could talk to him about anything --and
I still can. But he never started making arbitrary judgments or decisions.
If you ever wanted a true cheerleader, there he was."
     He waves her off with a smile as he continues his tale of growing up.
His mother had remarried, again an arranged union, but this one, says
Stephen, "must have been made in heaven." He adored his stepfather
Megregian. The depression had cloaked Detroit in fear, panic, and hunger
and they lived on Megregian's four-dollar-a-day factory job. Stephen worked
any odd job, discovering a lifelong talent for golf when he caddied for the
rich who had not lost it all in the crash. A chemistry major, Stephen
worked his way through college, acing exams --"I could cite things back
verbatim."
     By his freshman year, Stephen had picked his mate, an example his
daughter would emulate years later. When he first met Audrie Torosian,
however, he thought she was "strictly a pest." She was eight years
old--"and a girl!" Their parents were friends in a large, clannish Armenian
colony that held summer picnics overflowing with shish kebabs and Armenian
music and dancing. At one outing, Stephen noticed a fifteen-year-old who
had filled out a bathing suit and had become a "good-looking woman!" It was
Audrie, the pest of yesteryear. Like her daughter, she was a few months
older than her husband and, like Anna, a grade ahead. After Stephen
graduated from college in 1938, they were wed. With her degree in
psychology, Anna's mother became a social worker for the Detroit welfare
department. In 1940, their first child was born, Roseann. Simultaneously,
Anna's father began a wandering career as a U.s. Public Health Service
expert on pollution and sanitation. His son, Stephen, was born in 1942.
Eight years later, a second family was begun. "One day we found out Audrie
was pregnant. We said, "Let's have the baby." We didn't want this one,
Marty, to be alone, so we said, "Let's have another." After that, Audrie
got her tubes tied."
     Audrie was nearing forty when her last child was born, the girl they
named Anna.
     Anna fondly recollects an extended household that included two
grandparents. "I remember going to get ice cream with my grandfather.
Grandmother and I played gin and cribbage for hours. Even after she went
blind, she could still crochet by feel. She was a soft, genteel,
aristocratic old woman." Roseann did not share her sister's joyous
memories, remembering instead that she never had a chance to be a free
spirit like Anna. Ro saw mostly the duties of caring for the sick and
elderly, her mother's father and her father's mother. "A lot of Mom's time
was spent running them to doctors and taking care of them."
     Their mother, a caregiver by profession and choice, also worked long
hours. Anna's earliest memories are of her mother helping others. "She
would plop me in the car as she would ferry children from orphanages
to foster homes," recalls Anna. "One time, we picked up a little boy who
had ringworm and his head was all shaved. This poor little weird guy sat
there and bawled. I thought, "I can't believe I'm riding in the car with
this kid who's bald!" I was mad because I wanted to do something else, but
she had to take care of him."
     Roseann became a "mini-mother"--"I would take over with Marty and Anna
as soon as I came home from school. By the time I was eight, I could bake a
cake and cook a meal for six because I had to. I didn't resent all that
work, but, sure, it was tough. When I got married, you betcha I didn't want
any kids. I wanted to do my own thing, have my own life and my own career,
which I did. I didn't want to go from kids to kids."
     As carefree teenagers, Anna and Jan thought their luck would never
end. Then in her first year in college, Anna was traumatized by a near
rape. After all these years, Anna still recalls the incident with
intensity, rushing her sentences, switching from past to present tense and
back again. "I was eighteen years old and was taking drama and one of my
classmates was this huge, tall kid. I was hardly a sexual statement--baggy
jeans, an Israeli army shirt. I was your basic hippie."
     The student lured Anna to his room on the pretext of needing help with
his mime project. "Then he locks the door! I turn around, and see a guy who
looks really scary. I knew I was in trouble. And he began saying, "You want
it--all women want it," and he started to unzip. I just thought,
"Chain-smoke your brains out and think about what the hell you're
     going to do." He had a psychological need to think I wanted to be
raped. And I used that to my advantage because at the time I hadn't even
had sex. I kept chain-smoking and saying"-- Anna revs up her speed
to demonstrate-- ""I've never done this in my life, I'm not ready to have
sex, you've been misinformed, we are friends, let's be friends." And I kept
talking and smoking like mad. Meanwhile he took his member out and
proceeded to jack off in front of my face." Anna holds her hand eight
inches from her face. "I couldn't move and just kept talking and smoking.
He ejaculated right in front of me, then walked me to my bike and let me
go!"
     "I got back to the dorm room and then I lost it. That's typical in my
family. We can manage through the crisis--I have great survival
instincts--then after, we fall apart. I was babbling on the phone to Jan,
"Come over, come over." As soon as he walked in the room, I said, "Don't
come near me." My hackles went up and that poor man, my wonderful
husband-to-be, sat there, forever, it seems." The rape attempt could have
scarred Anna psychologically had it not been for Jan. "He supported me
while I tried to get perspective and made me enjoy the blessing that I was
alive. The attempted rape was a small price to pay for my life.
     "Mom went nuts. Dad said, "You can quit school," and I said, "I don't
want to quit school." For a month, I was escorted to classes. I found out
that an instructor had known this guy was having problems! I was very angry
at him for not turning that guy over to a place to get help before some
student got raped or killed." The episode changed Anna's career direction.
"I buckled under to my parents' request." They urged her to quit drama,
reasoning that a mainstream curriculum would not draw misfits. Anna became
an English major. "I figured, "Hey, I can be theatrical in class.""
     In her senior year, 1973, Anna faced a terrible crisis that
overshadowed the attempted rape. Anna was studying in her dorm when she got
the phone call. Anna plodded past music and laughter and talk emerging from
rooms, and picked up the dangling phone. Anna's mother was on the line,
trying to choke out a message while sobbing. "She told me that Ro had
breast cancer and that it was really bad and had spread and doctors said
she had three months to live. She was only thirty-two."
     Anna slid down the wall onto the floor, sobbing. The surrogate
     mother while Anna was a toddler and then a distant sister when Roseann
left home for college was now a friend. "It was devastating. I was
potentially losing a sister who meant everything to me." Roseann had met
her husband, Clifford Beutell, at Case Western Reserve University in Ohio.
Cliff was an editor for the Wall Street Journal and Roseann was a
department store buyer in Cincinnati. Anna marveled at her sister's fashion
flair; at that time, Roseann looked like a young Anna Magnani, five feet
eight inches, with a gorgeous full figure.
     Now Anna and her family experienced the full weight of anticipatory
grief. College pressures, Anna's graduation and pending marriage, were
eclipsed by a cold clutch of panic. Anna's thoughts were of Ro. She would
have angry imaginary conversations with her-- "Dammit, you're not going
to die." Then: "Mom will never recover, I can't live without my sister, Oh,
my God, will I get this? How did Ro get it?"
     "Cancer had erupted through her skin and gone into the lymph glands,"
recalls Anna. "She had estrogen-dependent cancer. Well, they pulled out
every estrogen source in her body-- full mastectomy, the lymph nodes,
ovaries --and she had an adrenalectomy!" Such drastic surgery meant that
Roseann would be dependent forever on cortisone, a steroid with severe side
effects. But no doctors could tell her how long "forever" was. Anna smiles.
"Well, Ro's still living! That was more than twenty-one years ago."
     Roseann's recovery after the complete removal of her body's
estrogen-making system was one of the cases that inspired research toward
creating tamoxifen, a chemical that prevents the body from actively using
estrogen. "Instead of taking the ovaries, the adrenals, etcetera, they have
created a marvelous drug," says Anna dryly. "The ironic series of events is
that Ro's cancer led to the research--and now those drugs aren't helping
her sister, me. Ro gets very angry. Says they should have taken everything
out like they did with her, but I keep telling her they don't do that
anymore."
     Roseann's cancer occurred the year before First Lady Betty Ford had
the courage to bring breast cancer out of the closet. Following her radical
mastectomy in the fall of 1974, the first lady broke through taboos to talk
openly and frankly about the words "breast" and "cancer," until then barely
acknowledged in polite company. Her fearlessness gave hope to
     countless women who had suffered in silence and sent thousands more in
search of mammograms. Little research had been done by the mostly male
medical and scientific professions. Roseann's surgery was a major
crapshoot. "It's the only time in my life I ever gambled," she recalls.
"Within forty-eight hours, the abscess started to shrink!" Daily X rays
were astounding. "The tumors went away, totally." The doctor published his
miraculous trial operation on estrogen-based breast cancer in a
"32-year-old female." Anna's sister now belonged to medical history.
     Roseann's constant, massive doses of cortisone have caused her to
"lose bone mass. I've shrunk two inches and gained all this weight." She
waves her hand over her plump body. Emergencies are life-threatening;
Roseann carries a med alert note with her always. "But it's been
twenty-plus years and I'm very happy to be walking around," says Roseann,
"so side effects I deal with. That's less important than the fact that I'm
here."
     By the day of Anna's wedding, August 17, 1974, the family had two
reasons to celebrate. Roseann was going to be fine. Anna, svelte but busty,
sighed when she looked at her baby-faced bridegroom-to-be. "The wedding
dresses I really liked would make me look like his mother, so I changed
to an ethereal "princessy" style to accent youthfulness rather than fashion
flair. It had short sleeves and I walked down the aisle with poison ivy all
over my arms and Jan had strep throat and was sick as a dog." But all of
that was forgotten when Jan slipped the simple band--that her dentist
brother, Marty, had fashioned out of dental gold--on Anna's finger. Jan was
a senior at the University of Maryland; Anna had graduated but had yet
to find a job. "But what a way to start out," Anna recalls. "Two cars brand
new and totally paid for as wedding gifts from our parents! Boy, I have had
the life of Riley."
     Although Anna matured into a young woman of talent and wisdom, nothing
altered her exuberance, not even five disillusioning years of teaching
junior and senior high school, first in Maryland and then in Richmond,
where Jan attended graduate school. Within a few weeks of the wedding, Anna
found a teaching job that covered their $143-per-month rent, food, and
electricity. Jan joked that he was being kept by an older woman. They found
a cheap apartment with old lovely rooms, and a modern division of labor was
soon in place. Jan did the cooking.
     "I am just an uninspired cook on a daily basis," says Anna, "while Jan
can glance into the fridge, ponder this and that for a moment, and the next
instant, I am eating a fabulous concoction of his invention. I don't envy
this talent --I cherish the fact that I am married to it!"
     While Jan finished his senior year as a biochemistry major at the
University of Maryland, he worked part-time at AFRRI, the Armed Forces
Radiobiology Research Institute. Meanwhile, Anna was getting the education
of her life teaching in a Prince George's County Junior High. "Along with
English, I taught everything from the next step above remedial reading
to honors classes! I was clueless--red meat to that class." Her dream that
"I would have my own stage and audience in class" gave way to grim reality.
"The seventies was a very frustrating era of "student's right," and
teachers had lost control, were at the whim of the student's lies and
abuses, the faculty's fear of lawsuits." One day Anna heard incessant
pounding through her wall. She raced to the adjoining classroom and found a
teacher, battered, on the floor. A student had purposely grabbed and ripped
a stack of papers the teacher was grading. As the teacher placed his hand
on the student's shoulder, the boy grabbed the teacher and slammed him
repeatedly into the blackboard. "This teacher was a timid, gentle fellow
and he quit his job, defeated and disheartened. I felt terrible. He blamed
himself for having touched the boy. Touched!? I would have collared the
kid."
     Anna made up her mind to make classes fun but rule with toughness. "We
goofed off doing participles or nouns or gerunds-- cracking up and coming
up with gibberish--but the academic points were made. I was determined that
learning did not have to be boring." The quid pro quo was that "they had
better learn the material, study for their tests, and do their homework or
else." Her biggest accolade was her nickname --"The Fail Queen." One boy
she did not pass--"He had a thirty-three average!"-- leaped up and choked
her in class. It took four others to drag him off. "The system opted
to give him his diploma anyway--"Let him become someone else's
problem"--and let him enter the army. God, imagine giving this boy a
weapon!"
     Jan bypassed his master's and in 1976 was accepted directly into a
Ph.d. program at the Medical College of Virginia. Anna found few discipline
problems in Richmond, where students called her "ma'am," but
     was disheartened when she saw the special favors athletes and coaches
were given while schools scrimped on money for education. Anna's classroom
career came to an end when she was commanded to teach a restricting,
unimaginative sentence structure. "I was being forced to teach completely
useless things. To me, the education system is bent on squeezing out your
enthusiasm by continually pushing "ordinariness" until you must either go
through the motions for a paycheck or quit. Jan and I decided I would go
crazy if I stayed. I quit with no job in the wings." Characteristically,
Anna saw the half-full bottle, facing the end of one career with high
spirits and a sense that new opportunity awaited.
     Life in Richmond, 120 miles south of the nation's capital, is captured
in magical memories. "It was the happiest time of our lives," recalls Anna.
"We discovered a cultural world full of people our age with inspiration,
ambitions, and dreams." When Jan and Anna left a decade later, Anna would
mourn that loss for the rest of her life.
     With her always through sorrows and triumphs, then and now, was a
young woman who lived across the street, Lockard--"That's her full name,
but no one calls her that." Anna and Jan became inseparable from Lockie and
her then-husband, Wayne Westbrook. One weekend, Anna visits Lockie in
Richmond. Anna's closest friend for more than twenty years retains her
arresting good looks. She is a tall, slim brunette with eyes that change
from deep green-blue to hazel, depending on the lighting. "Men flock
to Lockie," says Anna, "always have." Sitting in Lockie's cozy living room,
Anna says, "Do you remember when someone did a tarot card read--and we were
told that in former lifetimes we had been brothers, and another time we had
been married? I do think there was an old soul connection."
     Lockie nods. "When we met, we couldn't talk fast enough. We had all
this stuff to get out." Anna was twenty-six and Lockie twenty-nine. Lockie,
the beautiful art teacher, and Anna, the wild and attractive English
teacher, fresh and in their twenties, were too radical for their older,
conservative teaching colleagues, so their comradeship grew daily at work.
"And then Anna goes into advertising and I go into advertising and she
hires Wayne and me. She was responsible for us getting on our feet in the
business." Lockie and Wayne have long been divorced, but
     they remain friends and partners in a successful audiovisual
production company, Mainstreet Productions.
     Lockie eagerly says, "Anna's never met a stranger and is so full of
humor and so terrific to be around that everyone wants to be her friend."
Lockie jumps up off her living room sofa to demonstrate Anna in her
twenties, hopping back and forth, as if playing basketball. ""So what are
we going to do now? Okay, okay, want to watch television? You want
to listen to music?"' Literally she was going boinngg!" says Lockie,
leaping up. "She had so much vitality, passion, and animation."
     Anna rocks with laughter. "I was tiring to be around." In those days,
Anna drank coffee, downed chocolate by the gulpfuls, and chain-smoked,
lighting another cigarette as one smoldered in the ashtray. "The worst
argument Jan and I ever had was over my smoking. Jan thought that I had
quit --and I never said those words. I told him I'd try and that I wasn't
going to buy any. And I didn't--I bummed them." Both guffaw. "He just went
berserk. Locked me out of the house! I had had both kids by then, but there
wasn't secondary smoke because I never smoked around the kids or in the
house."
     "Jan is such a dear, sweet man," comments Lockie. "And so bright. He
always comes up with something that makes you think a little harder. Always
that twist--"Yes, but, what if ...?"' It's the scientific mind, I guess.
You two have always been "content,"" reflects Lockie. "It used to piss me
off. I would be pacing the floor saying, "Life has got to be more," and you
were such happy campers, and I'd say, "Oh, God.""
     Anna rests her head back in the car, warming herself in the welcoming
sun, as Lockie and Anna head across town to their haunts of yesteryear.
They pass the James River, where a wildlife sanctuary skirts the lake, just
minutes from downtown. "This is what kept us sane," says Lockie. "Oh, look
at our spot!" exclaims Anna. Down below, water swirls around huge flat
slabs of rock, forming small whirlpools. There they would float on inner
tubes, their dogs racing along beside the river. Lockie's car glides down
Monument Boulevard, where DAR memorabilia and a Jefferson Davis monument
coexist with a statue of Arthur Ashe. "We just rode past the country club
where he was not allowed to play," Lockie notes with irony.
     The streets grow smaller, the houses closer together, as Lockie
     approaches their old South Side neighborhood. "People on the North
Side used to say you needed shots to come over here. Most of us were so
poor, we qualified for low-income housing. It was just us hippie teachers,
musicians, arty crowd," says Lockie. The two couples were the hub: Wayne
was the lead guitarist and songwriter; Jan played drums, sax, and French
horn; Anna bass; and both women sang. Anna points to her former home.
Friends would join them, swinging on the front-porch swings and singing
until two A.m. "No neighbors complained because we were all involved," says
Anna, savoring her memories before they leave for brunch with Wayne, Anna's
closest male friend.
     Westbrook is tall, with a small gold earring in one ear, and a sharp
dresser, wearing slim-legged black pants, black boots, black jacket,
blue-green plaid scarf around the neck. Many women note that he looks not
unlike Paul McCartney. "Sir Paul," Lockie says. It is fitting that Wayne is
a Beatles fan. Anna snuggles fondly against Wayne. "We were famous for
movie marathons," she says. "We saw five in one day. We got stoned between
movies." In Richmond, Anna finally got her theatrical chance and she
recalls her most memorable performances. "I was Ariel in The Tempest at the
huge amphitheater, with audiences of three to four thousand. The critic
thought I had ballet training!" Anna and Jan were known for the best party
of the year, the Annual Post-Income Tax Backyard Champagne Brunchfest,
which grew to a crowd of about 300 and lasted into the next day. "There was
always a surprise event," Anna recalls. "One year, accidentally, it was the
birth of puppies. Another, Jan drove our white Olds Cutlass into the yard
and everyone painted the car." For many, as the partaking of pleasures
increased, the rainbow-colored car took on a shimmering psychedelic glow.
     As they drive back to Lockie's house, Anna says, "I'll never forget
the day that Hershel got it." Anna, the child who was not allowed to have
pets, made up for that loss in adulthood by surrounding herself with
animals. Her devotion to Hershel, their English springer spaniel, was
obsessive. "That driver was so reckless that she had her young baby on her
lap, not even in the seat belt. The minute she hit Hershel, I went crazy. I
knelt in the middle of the street screaming." The dog lingered for three
months. Anna cried all night when they finally made the decision to put her
to sleep.
     The death of a pet can engender deep mourning in adults as well as
children, and Hershel's death precipitated one of the worst crises in their
marriage. The next day, Anna returned from work to a deadly still house.
"There was no trace. No Hershel, no Nils, no note, nothing! I sat on the
kitchen floor, sobbing and raging." Then Jan called. "He had gone ahead and
put Hershel to sleep! His note had been covered up."
     That moment provides an abstract lesson on how people can misconstrue
the needs of others in marriage and in death, in sorrow and in mourning.
Anna felt cheated. "I was furious because I didn't get to ease Hershel's
pain and be with her when she died." Jan, on the other hand, felt he was
saving his wife from that ordeal. He couldn't stand to see either the dog
or Anna in pain any longer. "I know he bore the burden of it
by himself--but he took away the ability for us to be together, to comfort
each other." This was no small matter and Anna brought it up repeatedly.
"He let me rant and rave. After, I felt very self-indulgent and foolish."
Later Anna realized that, as a childless woman, she had transferred her
maternal love to the dog, which intensified the trauma. Still, from then
on, Anna and Jan kept a vow to face the tough moments in life together.
     When Anna quit teaching, she found creativity in advertising. "After
only three months in the field, I had a management position-- "in-house
advertising manager" for a bank." When the bank merged nine months later
and the Richmond-based group lost their jobs, Anna was outraged. "They did
not care; this was politics." Characteristically, she had not lost her
voice. "I marched into my boss's office and told him that he had no dignity
or character for allowing a perfect stranger to fire us. Then I went down
to the main branch, withdrew every cent, vowing in a loud voice, so
customers could hear, never to set foot in there again." She laughs. "What
an asshole I was."
     As Anna downed drinks in a bar that night with other fired colleagues,
panic set in. She and Jan had signed a contract to have their house
renovated--at a cost larger than their original purchase. "I kept thinking,
"Where am I going to get a job?"' We scrimped and took money out of
savings." Anna's voice grows intense. "It was incredibly scary. My shoes
would echo as I walked from empty room to empty
     room. There was nothing familiar or cozy. I would dig clothes out of a
wardrobe box to get dressed and look for jobs. For almost half a year, I
searched for work."
     Then it dawned on Anna that she wanted to work where there were no
openings--for the advertising director at Best Products Company, Helen
Lloyd, "a dynamo role model." Anna hounded Lloyd until she hired her as a
copywriter. Anna quickly advanced to ad manager, then creative director,
handling print, radio, and TV ads for 300 stores nationwide.
     Despite Anna's galloping career, life in Richmond collapsed when Jan,
doctoral degree in hand, found a job at the National Institute of Mental
Health, in Bethesda, Maryland, in 1982. He was soon immersed in riveting
research on Parkinson's disease, but was gone all week for the next three
and a half years, which put a strain on the marriage. Then, after ten
years, Anna became pregnant. Their freewheeling decade was over. Although
Anna and Jan were blissfully happy, the timing was terrible. Ellery was
born May 15, 1984, when Anna was thirty-two. "Ellery was such a delightful
baby, inquisitive and happy, but I began to resent single-handedly caring
for the little guy--getting him up, feeding and bathing him, hauling him
to day care, working all day, fetching him, feeding him and the two dogs,
and falling into bed exhausted."
     Meanwhile, Anna, the dramatist, invented a rosy life for Jan. "Jan
drives up to D.c.--okay, the drive is hell, but, hey?--then he works at
something he loves and goes home to a nice dinner made by his mom. "So
where was the stress in that?"' I would think." Yet Jan was as battered as
Anna, squeezing five days of work into four so that he could have a longer
weekend with Anna.
     Then Lindsay was born on October 9, 1985, a week shy of seventeen
months after Ellery. This baby was not easy. "She threw tantrums in the
womb." Anna was in a single-working-mother quandary. She found a day care
center in a woman's home that took infants. "I nursed them each for about
four months; I would pump my breasts, run over from work at lunch with it.
When Lindsay was two and a half months old, on Christmas Day, 1985, I threw
in the towel. I announced that our Christmas present to each other was
to decide where we were to live and work together, set a date, and do it.
We picked Washington for the obvious rea
     son--that is where the science work is. Jan's work opportunities were
geographically limited. I worked right to the end. On March 1, 1986, we
moved back, lugging all our possessions, and, against my better judgment,
lived with Jan's parents while we looked for a house to buy."
     CHAPTER THREE
     A New Stage
     Despite Anna's fervent warnings that living with her in-laws once more
would be disastrous, "they talked me into the worst seven months of our
married lives--theirs too, no doubt. The Johannessens are such optimists,"
she recalls with a laugh. "In family dynamics, I am the realist. Jan wants
to believe we are not capable of being small and petty, and we all are, all
families are when it comes to invaded space."
     The six-bedroom home became too small under the onslaught of two more
adults, one toddler, one infant, and two dogs. Anna always had a hard time
accepting generosity that could not be reciprocated and hated the
situation. She held her breath when toddler Ellery would leave toys around
for his grandfather to trip over. Jan and Anna feverishly searched for a
house in what was then a seller's market, settling in Olney, twenty miles
outside Washington. They still live in the same house, but Anna was never
to know the joys of Richmond, on this, her third return to the D.c. area.
"Nils and I both hate it. No offense to those who love it, but we find it
impersonal and extremely pretentious. Like Los Angeles, who you know is
what dictates life here."
     Anna plunged into her new life as primary breadwinner and Supermom. In
August of 1986, Anna became director of advertising in the Washington area
for Creative Hairdressers (the Hair Cuttery), a chain of 250 budget hair
salons. With sublime confidence, Anna became a leader as she moved from one
career to another. They found a good day care center, the house was shaping
up, life seemed radiant.
     In May of 1988, Anna was only thirty-five when she had a mammogram. In
light of Roseann's cancer, doctors had suggested Anna start mammograms at
forty, but she decided not to wait. The mammogram showed a questionable
spot on her right breast. It turned out to be a benign fibroid. Anna
merrily forgot about the incident, certain that her guardian angel was
watching out for her. "Mom told me that my birth date, October 2, 1952, was
known as Guardian Angel Day. I've never been sure if there is such a
thing--but my life sure seemed as though there is. Terrible things always
seemed to happen to others. I seemed to be able to cope, find that silver
lining, see a new opportunity and forge ahead. Especially in my twenties, I
felt guilty for having it so good, and felt that I should shoulder some
of the burden. Ro had to struggle for everything, not me. Mom had a
terrible childhood, not me. My brother Marty had a horrible first marriage
and Steve, the older one, had years of marital and financial difficulty,
not me. I just went along, with my guardian angel watching over me." Anna
continued her routine exams and mammograms and as the months stretched
to over a year, with perfect checkup after perfect checkup, she forgot all
about it.
     About that time, Anna quit The Hair Cuttery to join the mostly male
world of Jiffy Lube as an executive. Anna achieved a record-breaking 1993
sales year and won National Franchise Association honors as director of
marketing for Jiffy Lube Washington Area Co-op--an advertising cooperative
comprised of thirty-nine Washington-area franchised Jiffy Lube centers.
     On Halloween night, 1989--eighteen months after the discovery of the
nonmalignant fibroid--Anna found a lump near the scar tissue that had
formed following the needle biopsy. "I was giving out candy to kids, when
my bosom started to itch. The surgeon had warned me that I might be a
fibroid tumor grower and I assumed I had grown another [benign] fibroid. I
had no panic, but Jan urged me to see the doctor right away."
     The surgeon probed the lump; it was not a fluid-filled cyst that could
be drained. The itching stopped, and Anna agreed to wait until the bruising
went away to decide whether a lumpectomy was necessary. The Johannessens
went on vacation. Says Anna, "I firmly was in my optimistic mode." Five
weeks later, on Pearl Harbor Day, December 7, 1989, a
     lumpectomy was performed. As Anna came out of anesthesia, still
groggy, the doctor told her, "You have cancer; we could tell that from the
section we removed. I am sorry."
     "I should never have let her wait," Jan says years later. "No one can
tell you what it is until they slice it up and look at it under a
microscope. The first thing the doctor said to me was "Well, a month
wouldn't make any difference," so I knew he was thinking about that. I
didn't know if he was covering his ass, but no one can put a time on when a
cancer cell breaks away. That should be a lesson for everyone."
     Anna lay dazed, stunned, frightened, as the doctor turned around and
walked out. Like so many patients, Anna had been socked in the stomach
with a terrifying truth, then left alone to absorb it. "That was one of the
few times Anna was totally vulnerable," says Jan, remembering her
forlornness. "She sobbed and I cried." In a follow-up visit, the doctor
gave a terse recital of Anna's surgical and postsurgical options. "My
surgeon was a perfectionist," she remembers, caustically. "Other doctors
complimented me on the quality of my mastectomy scar. But obviously he had
taken no classes in dealing with human beings. The scary point is that my
situation is not the exception. I am a typical patient."
     Only in the last few years of this century has there been a concerted
effort--led by caregivers and some compassionate doctors--to humanize the
care of patients. Unfortunately, Anna's story is far too common. Start a
conversation at any gathering and one will find more incidents than can be
imagined. Here are just three: Ten years ago, Herbert Bloom, a gentle Miami
Talmudic scholar with heart problems, was given bad news by his longtime
doctor and friend, who then clapped him on the back and said, "Well, we all
have to go sometime." The man lived for years. A Washington businessman,
Aaron Woloshin, and his wife, Deirdre Pierce, endured numbing fear and
anguish when the doctor abruptly broke the news, with great certitude, that
Woloshin had acute leukemia and would die. The man took his illness
to another doctor and found out, after days of torturous mental pain, that
the first doctor was wrong. It was a form of chronic leukemia; most people
with it can live an almost normal, if not normal, life for a long time.
Years later, Woloshin is still healthily alive. Thirty years ago, a
pregnant young woman named Mary Esty woke up in the hospital minus a
breast. The
     exploratory surgery had turned into a mastectomy without her
knowledge. (her husband had signed for the operation, convinced by the
surgeon of the necessity to act quickly. In those days, women having
exploratory surgery often woke to the shocking reality that their breast
was removed. If it was nighttime, it meant that the operation had been long
enough for a mastectomy.) The surgeon came to her bed and told her, "You
have only three months to live and I suggest that you have an abortion."
Esty had her child and is now a Washington psychologist doing important
work in the field of alternative medicine. Esty's experience spurred her
search for better ways to treat cancer survivors with nonchemotherapy
alternative measures.
     Heavy emotions assault the stunned patient, including grieving, which
begins with the moment of diagnosis. Whether one survives or the illness is
transient, whether there is later cause for rejoicing, no one can
understand the patient's depth of sorrow for what might happen and a loss
for what has been. An irreversible altering takes place.
     "Learning the surgical skill seems to harden surgeons," says Anna.
"They have no heart. When ordinary people are told they have cancer,
technical information is thrown at them by the surgeon--who then removes
himself from any responsibility by citing he only cuts you up! Where is the
surgeon who talks slowly, calmly, reassuringly to the patient? Nonexistent!
This information must be given slowly and again and again because the
patient is in shock. The patient cannot comprehend it all and only thinks,
"My God, I have cancer. I am going to die!" It takes a while for that panic
and loss of control to abate before the patient can start making cogent
decisions. I dare any person to give a patient a memory test two hours
later and see how much information he or she has absorbed following one of
those sessions when the news is so bad. Luckily I have a husband who could
absorb the technical jargon that flowed out of the surgeon's mouth. I
learned the hard way and I make my doctors work for me! They are only
people and often wrong. There is no critical thinking unless the patient
demands it."
     As Anna began to face the facts, she knew she wanted a modified
radical mastectomy. "After my sister's breast cancer, I said, "Let's do it!
I want this gone forever."" The mastectomy was performed on December 14,
1989, a week after the lumpectomy. Her breast and lymph nodes
     under the arm were removed by the surgeon who made such beautiful
scars. Anna had made an appointment to see an oncologist in Olney, Dr. Ken
Miller, following surgery. She was surprised to see Miller at her bedside
as she recovered. He stayed more than an hour, discussing her cancer. "That
amazed me. We had immediate rapport. He had all the empathy lacking in
other doctors but was very straightforward." From then on, Anna called him
Ken.
     Anna had to wait seven days to learn if the cancer had spread to the
lymph nodes. This time, the surgeon had good news--the cancer had not
spread, he assured Anna. "Every single one of twenty-four lymph nodes they
took out was negative. So the opinion was that, once they took that breast
off, I was cured. I didn't need chemotherapy, but I said, "Hey, guys, not
with my family history. Give me all you've got.""
     Anna was thirty-seven years old and her youngest child had yet to see
kindergarten. Ellery was five, and Lindsay, four, was in day care. Now Anna
had to explain the inexplicable to her toddlers. They came into the
hospital room, eyes wide, unused to seeing their mother sick and in bed.
Anna grinned and acted as if it were a normal everyday occurrence. Soon
they were sampling the fruit and candy gifts, smelling the flowers, pushing
the buttons to see how the bed went up and down.
     Anna looked at her children as she patted her flat right chest.
""There was something bad growing in my breast and we had to take it off
to protect me,"" she explained. "Jan and I didn't make a big deal of it
and, as a result, they didn't. But they knew all the facts. I won't say it
was easy, but it was amazing how accepting they were. After the operation,
you really can't raise your arm from the shoulder. They move those muscles
and take the lymph nodes out under your arm. They tell you it takes about
six weeks and give you exercises. I had my range of motion back in three
weeks. I just couldn't stand it and I exercised like crazy. I was
determined that the cancer would not control me, I would control it!" In
two weeks, she was back at Jiffy Lube part-time.
     Still, Anna entered a survival phase that took some psychological
effort. She worked hard at "staying myself around the kids; I would take
the time and build my energy up, and when they were around, I was trying
to be relatively normal. They knew, of course, that things were dif-
     ferent. They saw the tubes, the fluid bags hanging out. They had lots
of questions and wanted to see everything. I told them, "You guys, right
now I've got staples in me; can you imagine being all stapled up?"' and I
described how staples clip things together. And I said, "I want it to look
a little prettier before you see it." When the staples were out, I let them
see it, touch the scar tissue, and ask questions. Lindsay, barely four,
asked her father one night, "Daddy, am I going to get what Mommy got?" Jan
hugged her and smoothed back her hair. "Honey, it's not contagious. That
means Mommy can't give it to you or anybody." Rather than plunge
into concern, Anna treated this as a normal, typical question of a curious
child, a view with which experts in child behavior agree.
     Two weeks after the surgery, Anna and Jan walked into Dr. Miller's
office, five minutes from home. They brought with them all the documents
concerning Ro's cancer. "I want every piece of heavy artillery you can
throw at me," said Anna. Miller agreed; at the time, NCI had begun
recommending adjunct chemo after node-negative breast cancer. Anna began
chemotherapy two days after Christmas. "I told the kids that these drugs
would stop me from getting sick again and I showed them the life port,
where the intravenous drip would go." It looks like a slightly raised scar
on the left side of her chest, above the remaining breast. A fine membrane
of skin covers the opening, which is easily primed when the tube is
inserted to draw blood or drip in medicines. The treatment consisted of
one-month cycles. "It was a cumulative effect and by the third week, I
would collapse, exhausted. As I started building my strength back up in the
fourth week, the cycle would begin all over again."
     For those six months, Anna retained an amazing schedule, rushing the
children to kindergarten and day care before going to work at Jiffy Lube.
"When I said it was Mommy's "tired time," they knew I had to rest. I
explained that the chemo was attacking any bad cells inside me, sort of
like Pac Man gobbling up the bad guys, and that that sometimes meant that
the good parts hurt too." As soon as the chemo treatments ended in July
1990, Anna started tamoxifen. The medical profession had moved on to a new
world of chemo cocktails--adrenalectomies belonged to the past.
     "Like Ro, my cancer was estrogen dependent. Tamoxifen helps inhibit
estrogen from being the catalyst for cancer again. The chemo and tamox-
     ifen caused me to go through menopause just like that," says Anna,
snapping her fingers. "I had the hot flashes from hell. Even Ken is
surprised that they have not abated. Often I have to sit down because I
fear that I will pass out. Once my body is about to burst, I break out in
gushing sweat from head to toe. Droplets of sweat fall from my face and
people stare with curious amazement. Then I become very cold and clammy
from the damp perspiration. On very good days, this happens only once every
two hours. I have yet to meet another breast cancer patient who suffers hot
flashes to this extreme." After years of this daily soaking, Anna learned
to dress in layers so that outer clothing stays dry enough to protect her
from the chills that follow. After a sudden drenching, Anna's face and head
are as wet as if she had just walked in a thunderstorm. Sleeping is a
special nightmare; Anna drenches the bedclothes, hunts for a fresh spot
until that one gets drenched, and on and on, into the night.
     Dr. Miller, Anna's slim, mustached oncologist, is near Anna's age.
"We're both Star Trekkies," says Anna, referring to one of the
instant-rapport litmus tests among baby boomers who spent their adolescence
glued to the TV series Star Trek. Miller received his medical degree from
Tufts University, interned at the Yale University School of Medicine, was a
Fellow in Hematology at the National Institutes of Health, and a Clinical
Fellow in Oncology at Johns Hopkins Oncology Center.
     One afternoon in 1995, between constant phone interruptions, he talks
about breast cancer. When Anna first came to him in 1989, the number of
affected women in their thirties was low. Now he is among the many
oncologists who call breast cancer an epidemic. "It used to be one in
fourteen, then one in ten; now it is one in eight women who will develop
breast cancer." Some of this boost is caused by early detection and
by sheer numbers; women in that huge pig-in-the-python bulge of baby
boomers. Other high-risk theories--from later pregnancies to pesticide
exposure to genetics to fatty-food diets or smoking--are considerations,
but no one knows how and why one gets breast cancer.
     Anna kept to a rigid schedule of doctor's visits, starting every three
months, then every four months after two years, and every six months after
three years. There was never a hint of anything wrong. Anna also went
to her gynecologist for endometrial biopsies because tamoxifen
     can cause endometrial cancer. These biopsies were always negative.
By 1994, Anna's checkups were as routine as going to the dentist.
     Anna stayed with Jiffy Lube for three more years, but the situation
had turned sour. Anna was reluctant to lose such a good position and salary
--$76,000 a year. Like many, however, who are faced with the shock of a
serious illness or the death of a loved one, Anna was soberly reexamining
her life. "Getting sick rocked me enough to ask, "What is it you really
want to do?"' What I wanted was to open a cute shoe store for children. I
did my research, put the money together, and in July of 1992 opened up
Happy Feet Shoes in the oldest mall in Olney." The framed dollar bill from
Anna's first sale hangs on the dining room wall. Anna was putting every
other Jiffy Lube paycheck into the store and needed her job more than ever.
     "At first, I made every stupid mistake known to man." Anna jokes that
if "something is in style, give it two years before it hits Olney." Yet she
could not resist buying as if the store were on Fifth Avenue. "Purple shoes
for five-year-old girls," she says, rolling her eyes. She had to sell stock
at a steep markdown. A blizzard piled up twenty-seven inches of snow. It
took a week for the snow-removal trucks to get to her side of the mall,
even though county law required removal within three days. Anna told her
partner, Connie Giordano, "Call 'em and tell them somebody just slipped in
front of my store." Her walks were shoveled within hours. For Anna, there
was always a solution.
     At year's end, Anna's partner left for a better-paying job. Determined
not to lose the store, Anna quit Jiffy Lube to run it by herself. "I was
burning the candle at both ends and was tired of the ugliness and
squabbling that was going on among the franchisees. That store was my
little baby and I was going to make it go." Her decision was a financial
blow--"We took a good sixty percent hit in income. But I was so exhausted
that Jan was just glad to see me choose one or the other." Anna made her
store so intriguing that business picked up. Wallpaper featured Day-Glo
sneakers. A play area contained TV videos, a pink flamingo rocking chair
and toys, hats and costumes for dress-up. Parents rejoiced that one child
could play while another tried on shoes.
     The only children who hated the store were her own. No longer able
     to afford sitters, every afternoon Anna closed the store, raced
to pick them up at school, and hurried back. Ellery and Lindsay did
homework on a stockroom table until closing time. "It was hard," recalls
Anna. "They had to be on their best behavior." Anna told herself that soon
she would be able to afford help with her children and the store. "It was
starting to turn. I didn't pay myself a salary, but I didn't have to put
money in anymore."
     As Anna faced the public daily, she adamantly refused breast
reconstruction. "I wore the damn prosthesis when I was the center of
attention, like at the store, so that what I was doing took precedence over
my physical appearance. They're making boobs out of this fine latex," Anna
says one day, drawing out a breast mold that has the texture of raw chicken
breast. The fake bosom became an object of fun; the family tossed the
"rubber chicken" around like a ball. Then it settled, forgotten, tucked
away in a drawer.
     During those financial hard times, Jan, a respected scientist, made
about $55,000 a year, typical for researchers who do not opt for big-money
pharmaceutical companies. Anna and Jan give each other total support for
their career moves. "Only once did I ask Jan about a job he was considering
with a company," recalls Anna. "It would have paid a lot and been a
fast-track job. As he talked, I could tell that it wasn't for him. I
realized it was too important that Jan find an environment in which he can
mentally prosper. Private research companies don't give you the freedom
to pursue scientific curiosity. It's a trade-off. Government perks made up
for less pay. Our insurance company pays a huge part of our medical
benefits."
     Anna and Jan saw sunny days ahead, with Anna the happy entrepreneur,
Jan the contented researcher, the children growing into fun-loving
companions. For years, cancer was a distant specter. Nothing but the life
of Riley and guardian angels were on the horizon.
     In 1993, however, Anna was felled by a major loss. Anna was nearing
forty-one when her mother died after being ill for only three months. She
had been a profound, confounding influence in her daughter's life. Anna
mourned deeply. The death of a parent at any age is a special grief. By the
time children have become adults, myriad emotions accompany that
     grieving--from relief to rancor, conciliation to unfinished business,
abiding love to ambivalence. Feelings are not just of that moment but reach
into the past and extend into the future. Sometimes one feels freed up or
compelled to change one's own life, to divorce or get married, as one's
mortality is realized. One's life is forever changed.
     For solace, survivors often gather possessions of the dead. This can
take the form of wearing clothing and jewelry or placing pictures and
treasured trinkets nearby. Sometimes closeness comes with tactile
remembrances. One woman kept and used her mother's powder puff, conjuring
up her mother's soft skin as she had applied powder to her face. Anna
remembered her mother's caregiving gesture--holding a person's hand, softly
touching it with the other in a rhythm of three taps.
     Audrie Megregian was a tiny, five-foot-two-inch bundle of
complexities. Her remarkable creation of a rape crisis center --Anna's near
rape in college was the catalyst--catapulted Audrie into the White House
for honors and lunch with then-president Ronald Reagan. Her public persona
was the picture of self-assurance--gregarious, every hair in place,
exquisitely neat in suits and heels and nylons, never slacks, a gentle
smile that did not hide the firmness in her voice when speaking about her
work. Yet she was driven by personal demons of self-doubt stemming from a
bruising childhood.
     "Mom was one of the neediest people I ever knew," recalls Anna. "As
much as she was able to do, I've always wondered what heights she could
have reached had she been motivated by confidence instead of by terrible
insecurity and need. To the day she died, Mom was seeking approval. Her
whole existence was knowing that people needed her." Her work--her mother
termed it her "calling"--was a direct response to a childhood "that would
today be called child abuse," says Anna. "She was still trying to get
approval from her mother. It killed me to watch her fighting ghosts."
Anna's father concurs. "Her mother pushed Audrie around like she was
dirt--chattel, a slave." Anna gasps, "My mother was forbidden to speak
by her mother! Commanded to be silent! Once she got out from under her
mother's grasp, she talked twenty-four hours a day. Never stopped talking.
That drove people away." In a laudatory article about her mother, the
author, Jim Ash, could not resist mentioning this trait: Audrie "is a
74-year-old perpetual motion machine, admired as
     much for her bottomless well of compassion and 18-hour days as she is
sometimes feared for her marathon conversations." *1
     Like many children who have been abused, Audrie felt it was her
fault--and lavishly praised her mother until her husband would remind her
of reality. "Finally the dam would break," says Anna. "She would slowly
work herself up to "no one will keep me down anymore."" That was when Anna
heard bizarre stories, such as the day her grandmother ripped off Audrie's
blouse in a jealous rage because Audrie and Stephen were going to a picnic
attended by a woman she detested. Anna's father's anger flashes and he
slams his palm on a leather chair. "I tried to get her to forget about it
all, but I never could. It just stays with you."
     The fascinating enigma that was Audrie contained a sad irony. Her
social worker gifts were stunning. "Strangers in airports were drawn
to Audrie like a magnet," recalls her husband. "Casual acquaintances came
to live with us for four or five weeks at a time because of Audrie. A
colleague of mine died of a brain tumor and Audrie took his widow in,
quieted her down, got her a job." In her private life, however, those
skills disappeared when dealing with family members.
     Audrie became a feminist role model regarding Anna's careers. "She
gave us a lot of strength and a lot of guts--but when it came to working
with her children, she dealt with the family completely differently," says
her daughter. "She could not tolerate criticism at all." This created a
barrier to intimacy. Anna's attempts to "try to explain how she made me
feel" were met by a deeply hurt and defensive "Wasn't I a good mother?"
     Anna loved her and embraced many of her qualities, yet deliberately
eschewed others. Although she vehemently rejected her mother's wish that
she become a social worker, Anna absorbed that same empathy and generosity,
applying it to her daily interaction with friends, relatives,
acquaintances, coworkers. Disavowing other traits, Anna endeared herself
to others with her directness, ability to take criticism and to laugh at
herself. "I've worked very hard to let my kids know when I screw up. I say,
"I'm sorry, I screwed up." We don't play the parent-is-always-right
game--that's just not correct."
     The pretty, petite, "life of the party" square dancer taught her
daughters nothing about what it meant to be female. "It was tough. Ro got
her period in the middle of camp and thought she was dying. Luckily, my
     sister was able to tell me all about it." Anna still guffaws at the
conversation she had with her mother the night before her marriage.
"Finally she told me the facts of life, at age twenty-one! "It's okay,
honey, if it hurts the first time." And I'm going, "Right, Mom. No
problem," ready to fall over in hysterics in the bathtub. For God's sake,
Jan and I had been all over England together! The only person I ever was
really intimate with. Hello-oh. She never wanted to see it."
     When Anna and Roseann became adults, Audrie's desire to help could
overwhelm, although in retrospect they tell their special "Audrie stories"
with fondness. The night of Ellery's birth, Anna went into serious labor at
midnight. "Mom had gone to sleep, but the next thing I know, she was down
the stairs, dressed in a neat blue suit, nylon hose with garter belt--she
never wore panty hose--even had a necklace on, her hair done and lipstick
on ... oh, I forgot, and in high heels!"
     It was a difficult birth and the gasping baby was raced to the
incubator. "Man, that was Mom's big claim to fame--that she was right there
making those nurses run along with that cart, doing everything right. In
her high heels. She went nuts when Ro got sick," says Anna. "She came with
great intentions and then she'd get in your kitchen and she'd clean.
Rearrange cupboards, everything." Ro laughs. "We lost a bowl for five
years. I teased her about it, but she couldn't take the joke."
     In retrospect, Anna admires her mother, the fierce lioness with her
cubs. "She never had a mean bone in her body." Audrie's criticisms were
always oblique, yet she aggressively urged her children to succeed, often
in goals that she had chosen. Audrie's beautiful, lilting voice would fill
the house--"In a different era, she could have had a singing career," says
son Steve. For her children, music was a must and piano lessons a
requirement. Anna is glad for that today, but other traits produced lasting
rebellion, among them her mother's compulsive neatness. "We were not
allowed to be messy kids! I had a white fancy bedspread and I had better
pull it back to sit on the bed or I was in trouble." Today Anna uses
furniture until it wears out and turns her king-size bed into a cozy island
for the kids, her, Jan, and the dogs.
     Although Anna's father spends most of his time in the den off the pool
in his Florida home, his wife's presence lives on in the ornate living and
dining room untouched since her death in 1993. French-style fur-
     niture upholstered in pale blues and pinks sit in pristine readiness.
Silk flowers forever bloom in Audrie's vases. Porcelain knickknacks abound
along with Oriental vases, Japanese and Chinese paintings.
     As a teenager, Anna's rebellious independence, her smoking and
drinking, created strife. Those days were long forgotten in later pleasures
shared by mother and daughter. However, Audrie endured painful discord and
alienation with her daughters-in-law until her death. Audrie was never
obviously critical. For example, says Anna, "there was the time Jan grew a
beard. Mom looked at him and didn't say a thing. Then she calmly said, "You
know, the district attorney in Florida had a beard." Pause. "He shaved it
off." Boom. Jan just laughed." She didn't boss her sons' wives, "but if you
were insecure, her every word would bother you. I think she intimidated my
sisters-in-law."
     Adds Roseann, "Mom was not allowed to participate in the joys of being
a grandmother to my brothers' kids." Anna says, "Oh, man, it really hurt
to see Mom so torn up. I wanted to say to my brothers, "This is your mom.
This is your wife. Have some gonads, boys; sit them down and get this
solved." But I never did." Nor was her mother helpful in fence mending.
After watching this impasse, Anna made sure that Audrie and Stephen visited
with her children and created a lasting bond. Ellery and Lindsay have
loving memories of their grandmother. Says Ellery, "She was always
singing."
     Family dynamics can frequently be puzzling. Grudges can fester
into feuds of mystifying proportions and duration. Says Anna, "We're no
different. I look at others and I shake my head and say, "Everybody reacts
to somebody in a very unusual way," and when you're on the outside, you
say, "Huh? What? You're kidding me!""
     Audrie's continuing isolation from her Florida grandchildren propelled
her into long hours with her baby, CASA. Audrie founded CASA-- Commission
Against Sexual Assault-- after she moved to Cocoa Beach in 1975 for a
so-called retirement. Audrie single-handedly carved out the volunteer
organization that brought national accolades. One wall in the Megregian
Cocoa Beach den is a shrine to Audrie. In her picture with President
Reagan, the petite Audrie seems weighted down with the large sterling
silver medal, worn on a wide red, white, and blue sash, as she clasps the
president's hand in her customary two-
     handed greeting. Audrie was one of 20 culled from 40,000 nationwide
volunteers to receive a 1983 President's Volunteers Action Award. More
plaques and awards are on display, along with a July 1, 1984, cover story
from Parade magazine, "What Happens to Heroes?" by Jack Anderson, featuring
Audrie.
     Audrie became a messenger of enlightenment. She started rape-trauma
support groups, held child abuse seminars, and dealt with as many as 100
rape victims a year. Well into her seventies, Audrie would be, as she
phrased it, "on the street" all night. "I didn't like that at all," says
Anna's dad, "but I couldn't stop her." Sometimes Audrie's ventures sounded
like the stuff of X-rated movies. She coaxed a reluctant nineteen-year-old
rape victim to give a police report that resulted in the capture and
imprisonment of the man called the Vampire Rapist, who had drained more
than 50 percent of the girl's blood, then drank it from a beaker. For
Audrie, there was never any hesitation. Once, she rose from a hospital bed,
walked out, catheter trailing, and showed up at the courthouse to stand
by one of her "children." *2 Not only did she comfort victims, Audrie was
determined to put rapists behind bars. One time, Audrie was not allowed in
the courtroom to guide a child, only eleven years old. "I get goose bumps
just thinking about this," recalled Audrie. She told the girl, "Sweetheart
... I'm in your brain. ... I know you can do it." *3 After that ordeal, the
child drew a picture of Audrie--with a halo.
     Audrie's unrelenting devotion to CASA-- she never took a cent in
salary and used some of her own money to keep it afloat--was rewarded
with a terse dismissal; it was never explained by Brevard County health
authorities, even after local newspapers probed what seemed an
astonishingly cruel act for someone so respected and honored. When CASA
finally had the potential as a government-funded agency, "they kicked Mom
out. They didn't want a seventy-plus grandmother running it," says Anna.
Audrie called it the "rape of my soul." *bled Anna's mother was nearly
destroyed; she mourned her loss, her weight dipping below eighty-five
pounds.
     A year later, she was back in the public eye, however,
enthusiastically plugging her new job, which she termed the first of its
kind in the country, counseling families of prison inmates. Still, Anna
says, losing CASA was a mortal blow. "I do think that stress is a cancer
inducer and after those
     people did such a horrible thing to her, Mom was never the same. It
ate her away." Nearly four years into that job, Audrie started constantly
clearing her throat. She was diagnosed as having stomach ulcers. The doctor
switched medication often, but nothing helped. After treating Audrie for
three months, he reexamined her. This time the doctor told the stunned
couple, "I'm sorry, I can't do anything more for her. She's got cancer."
Her husband recalls, "In all that time, nobody said anything about cancer!"
The horror is replayed in his face.
     In the spring of 1993, Audrie's stomach was removed, but the cancer
had spread. She lived for only three months and was in severe pain. Had
they known the results, no one in the family would have considered the
operation. A belief remains that Audrie might have lived longer had she
been properly diagnosed earlier. Stephen's eyes fill as he fights off
tears. "I get so damn mad when I think of that doctor."
     In those swift final months, Anna recalls, the roles were reversed.
The daughter remembers "tapping her hand, talking to her, just like she
used to for me." The task of caring for her mother fell to Roseann, who was
out of a job then. Says Roseann, "Anna once said, "She's getting even with
you for not having kids, because now she's your kid." At the end, it was
like taking care of a baby and changing diapers."
     Stephen refused a hospital bed; after more than half a century of
sleeping together, he wanted to remain at her side. Near the end, however,
he moved to another room; he could not take seeing his wife, who was no
longer the Audrie he had known. He recalls hospice as "the greatest support
you can get." Not in Roseann's mind. The emotional and spiritual aspects
of the hospice team--social worker, chaplain, and volunteer--were declined.
The team consisted of two, a nurse and an aide. For Roseann, with her
weakened back, the aide who daily washed her mother was a "great help."
But, says Roseann, "I was angry that I wasn't trained." Instead, a nurse
friend showed her how to "pillow her in bed so that it would not hurt, how
to turn her so as not to have bedsores. Nobody from hospice prepared me for
what to look out for."
     Roseann's anger was not only at hospice. "The whole time I was there,
neither of my brothers or their wives offered to help. One night, Marty and
his wife came over and she took me out and he stayed with Mom. One time!
Over three solid months." Stephen asserts that "Mom
     didn't want their help. She would have tolerated only Anna and Ro. No
one else."
     Audrie gave her last speech at a retirement party less than three
weeks before she died. Reed-thin but still pretty, Audrie was hugged
by family, present and former coworkers, and victims she had helped. She
heard the words that made her feel needed; she was "irreplaceable and we
love you very much." Her last words were about giving. "Something I've
tried to raise my children with--and that is that all of you, in some way,
give five minutes a day for somebody else."
     Audrie Megregian died on July 21, 1993. She was seventy-nine. Anna had
already written her mother's obituary. "I sat down in tears one day and
wrote the thing." At a memorial service, some of those who had been
instrumental in Audrie's dismissal from CASA showed up. The infuriated but
gracious Megregians said nothing. Then Anna, with a fury as strong as any
of those times when her mother felt the need to fight for her children,
marched up to their flower arrangement and, after making sure that they had
seen her, threw it in the canal out back.
     Part II
     A Rage to Live
     Do not go gentle into that good night, ... Rage, rage against the
dying of the light.
     Dylan Thomas
     CHAPTER FOUR
     "The Return of the Big C,"
     Insurance Companies, and Other Snafus
     The death of her mother was an incomparable blow to Anna. For so many
people in the first stages of mourning, never being able to talk to the
loved one again, never to hear the voice again, never to see the person
walk through the door again, is a torturous reality that nullifies any
wistful denial of death. For years, Anna and her mother had talked on
Sunday nights, a connection now irrevocably broken. Anna sobs on Sunday
nights now, even though she maintains the ritual phone call with her
father. She worries about her father, terribly alone, for the first time in
fifty-five years. And she is learning that one misses a departed loved one
forever. The ache is physical as well as emotional and is often described
as feeling like there is a hole in one's heart. As time continues, for
most, the emptiness of loss becomes more manageable.
     A half year later, Anna's personal life, as the New Year of 1994
arrives, is positive. Still struggling with her Happy Feet shoe store, Anna
finds that ownership, even an in-debt one, is exciting. "It was so nice
to be my own master." Her children are growing by the day and, for the most
part, happily, although they miss their hardworking mother. And the best
news is that her January routine six-month checkup--four years after her
mastectomy--shows that Anna remains cancer free.
     Suddenly that summer, a year to the month of her mother's death,
     Anna learned a terrible truth. Her cancer had metastasized and was
spreading through her body.
     "I knew then that cancer would kill me. I just didn't know when."
     Anna had noticed a bump on a bone in her right chest. She thought she
may have pulled a muscle while working vigorously in the garden, not an
unusual possibility. Anna was just weeks away from her semiannual cancer
checkup and decided to wait. Later Jan says, "The lesson on this is "One,
you know your own body and, two, don't wait!"" Anna admits that "I was
waking up at night in agony but kept thinking that the tamoxifen hot
flashes were causing it." Miller did his blood work and suggested that a
surgeon examine Anna. The surgeon suggested ibuprofen "to see if the
swelling went down." Within days, the situation changed dramatically. "Ken
called and said, "Get a bone scan right away!" Blood work results showed
that my cancer marker--the test that checks for a certain protein
associated with breast cancer--was way off the scale. Normal is from zero
to thirty and mine was up to nearly two hundred eighty-five." The next day,
Anna had the bone scan. "To Ken's credit, he came down and sat with me."
They looked at the results. Anna said, "I'm supposed to be worried, aren't
I?" Miller choked as he said yes. Anna burst into tears. "He held me as I
cried."
     When Anna could stop crying, they reviewed what she should get done
while Miller was on vacation. "He apologized profusely because he wouldn't
be here for me." An absolute must was a bone biopsy. Afterward, the surgeon
announced that the results were negative and that Anna was cancer free. The
surgeon had operated on the wrong rib. As Anna came out of the operating
room, recalls Jan, "I took one look--the bandages were way down here!" He
points to his chest. "A good three inches below where it should have been."
Anna and Jan raced to Miller's new assistant, Joe Kaplan. "We're in Joe's
face. "This is not right. I am sick! You can see it with the naked eye!""
recalls Anna. Kaplan instantly ordered a CAT scan-assisted biopsy on the
right spot. "It showed, of course, that it was malignant and obviously that
I still had cancer."
     In fact, the cancer recurred with swift, thorough, heartbreaking fury.
An MRI, taken immediately after the correct bone biopsy, revealed that
"there was cancer running amok in the liver, my neck, the bone, and my
chest."
     Anna and Jan were thankful for only one thing. The children were
visiting his parents in Seattle. They had a little time to face up to this
terrible moment before breaking the bad news.
     What happened to cause, as Anna terms it, "the return of the Big C"
lies in the unknown. She was a victim of what doctors call the monster or
"evil" disease. There are over 100 different types of cancer. How and why
one gets cancer is still a mystery, although there are high-risk facts and
theories (smoking, high-fat diets, environmental causes, and for breast
cancer, early menses, child-bearing after thirty, among them). After
decades of scientific trials, there remains no cure, although there have
been successes in extending patients' lives--so much so in some types of
cancer that one can live productively into old age. Still, most everyone
will experience the sorrow of cancer, either for themselves or for family
or friends.
     When Anna discovered at the time of her mastectomy in 1989 that the
lymph nodes in the armpit and surrounding area were cancer free, she felt a
gush of relief. Her early-stage diagnosis made Anna a primary candidate for
long-term survival. This diagnosis--and the fact that she was but five
months away from what is popularly termed the "five-year cure," the
widespread opinion that if you reached five years, you were cancer free--
brought complacency. But Anna was wrong on both counts. All of her nodes
were not checked and, alas, the accepted wisdom of the five-year cure does
not apply to breast cancer, which can recur at any time as the years pass.
*1
     In two frenetic, anxious weeks of tests, Anna went from a carefree
"almost cured" survivor to a woman facing death. It is true that those
twenty-four biopsied lymph nodes taken from Anna's armpit area were all
negative. However, few women know that there are lymph nodes nearer the
center of the chest as well as in the armpit area. Anna's breast cancer
tumor was very central--and could have infected the mammary nodes close
to the breastbone. Biopsies are not done; to reach nodes in that area would
be extremely dangerous and difficult. "You don't open a woman's chest up
to do a biopsy," explains Miller. "The risk outweighs the very small
benefit. When her breast cancer was found, there must have been some cells
that were outside of the breast. The problem was that at that
     time, they were too small to see on CAT scans and X rays. Even if you
could remove those nodes, you may not have seen an individual cancer cell
or two." Anna had used the one accepted method for killing cells in that
area, chemotherapy, but, as Miller says, they could have been lying
dormant, like some diabolical alien.
     Dr. Miller is asked if he was surprised when Anna's cancer recurred.
He sighs. "Yes. The feeling is a mixture of a lot of things. On one hand,
the scientific part of me says that this is the nature of breast cancer.
It's a rotten disease." A certain percentage of cancers will recur, but
doctors cannot gauge which of their patients will be so stricken. "The
personal part of me says, "This is sad, it's shocking, it's demoralizing."
And I rack my brain and say, "What could we have done? Why did this come
back?"' If I detach myself, I can say that's the nature of cancer. But it
doesn't prevent me from saying, "Jeez, I wish things were different," and
being angry."
     As Anna faced her future in 1994, she knew that, unless medical
science produced a miraculous cure, metastatic breast cancer was considered
unsurvivable. Yet Anna was determined to fight to the last possible moment.
And hope for that miracle cure. "I was going to control the cancer--not
have it control me. By the time Ken returned, I already had my life port
put in. I said, "Let's get this sucker in here." I was ready to combat this
disease." She immediately went back on chemotherapy, but even as these
poisons coursed through Anna's body, Anna and Jan feverishly searched
for the newest treatment possible. Instead of help, they found terrifying
nightmares.
     Their big plunge was a frenzied race for an autologous bone marrow
transplant (Abmt). In 1994, bone transplants were so new that many
insurance companies labeled them experimental and refused to pay for them,
including most federal insurance plans. Without insurance, the whopping
bill (well into six figures) for a bone marrow transplant fell to the
patient and family. Anna called the National Cancer Institute to see if she
would be eligible for their transplant clinical trial. Anna's hopes soared
after she spoke to the NCI coordinator and was repeatedly told that she was
not disqualified for having had one chemotherapy treatment. "The point was
made very clear to Ken and me that a second would definitely disqualify me,
so I held off." She pinned all her hopes on the trial treatment, which
included high-dose chemotherapy com-
     bined with the bone marrow transplant, and which was being heralded as
a miracle breakthrough in cancer treatment.
     She contacted one of the medical centers participating in the project
on Long Island, and was scheduled for a September 19 appointment. Anna
slept little in anticipation, then flew to New York with Jan. The National
Cancer Institute had sent its records, stating that Anna was eligible. As
they rented a car and drove to Long Island, Jan and Anna fell into their
old pattern of thinking positively. After an examination and lab work, the
doctor told Anna that she met the criteria, but that he was concerned that
Anna had taken a first dose of chemotherapy. Anna assured him that NCI had
given her a green light. "So I signed the consent form." The form spelled
out the drastic treatment, which had even caused death, but Anna flew home
to her children and the dogs "feeling there was hope" for the first time
since July.
     She had read the consent form meticulously before signing. It is a
combination of graphic risks and phrases that sound as if the doctors were
merely farming a field crop: "The harvested cells will be frozen and
stored." These stem cells and bone marrow would be reintroduced later
into her body. Massive amounts of chemotherapy "will totally destroy the
bone marrow [left in the body], placing me at risk of infection and
bleeding complications. ... I may die from the complications of this
treatment or if the reinfused bone marrow fails to function normally." A
grim litany of possible lesser side effects--from vomiting to reversible
abnormalities of liver and kidney function--filled two single-spaced pages.
The list of possible benefits was only one paragraph and did not mention
cure: "further tumor shrinkage, longer duration of disease remission,
prolongation of life." Anna felt she had nothing to lose and possibly years
to gain.
     The next day, Anna called the doctor, anxious to get started. Her
stomach churned, first with panic, then rage, as Anna heard him explain
that she was not eligible after all. The criteria had been changed and her
one chemotherapy dosage now disqualified her. Anna demanded to know why the
NCI coordinators for bone marrow transplants--those who pass on the
information to cancer patients--did not know there had been a change.
Anna's voice became icy as she asked the doctor, "If and when do you plan
on informing the NCI coordinators?!" After a
     sobbing phone conversation with Jan, Anna called NCI and "blasted the
poor young volunteer on the telephone for the fact that something so
important as life and death is treated so lackadaisically." The change
became well known "after my discussion with the doctor. It was my situation
that enlightened them. Until then, coordinators were completely unaware
that the criteria had changed in any way whatsoever!"
     The following day, a front-page article in the Washington Post carried
great news for federal employees. The Office of Personnel Management (Opm)
announced that effective immediately (september 21, 1994), bone marrow
transplants would be covered by all government insurance policies. "Oh,
happy day," thought Anna. That week, Ken Miller told Anna to contact Johns
Hopkins Breast Cancer Institute; if her liver tumors decreased
sufficiently, she might be eligible for a bone marrow transplant. Then came
another blow. Anna was told by the insurance company that prestigious Johns
Hopkins was a nondesignated facility and they would not pay for a bone
transplant. Anna fired off letters of complaint regarding these policies
and her searing encounter with government incompetence. In a letter to the
Office of Insurance Programs, Anna termed the bone marrow clinical trial
snafu an "unconscionable" error for patients whose lives hung in the
balance. Her request for financial reimbursement for her futile New York
trip was tersely refused. Anna sat for hours composing letters that
outlined both situations, catastrophes to her. Form letters came back from
female congressional members whose inquiries to the insurance company and
NCI were ineffective. President Clinton's form reply never mentioned Anna's
problems as he pushed health care reform: "At some point each year, 58
million Americans lack health insurance, and each month, two million lose
their coverage."
     Anna's frustrations point up the widespread disillusionment of
millions of Americans, victimized by a crumbling health system. The current
medical state transcends the Big Scare, so fiercely orchestrated
by insurance companies in their massive and costly ad campaign to defeat
Clinton's national health insurance in his first term. As insurance-run
HMO'S and PPO'S (preferred Provider Organizations) took hold, the dire
predictions happened anyway--narrowed choice of doctors, hospitals, treat-
     ts, humane care--thanks to those very same insurance companies.
Instead of the government setting the agenda, money-making insurance
companies are in charge. Now cost-counting accountants, not doctors, decide
what procedures should be done on an outpatient basis, where, and for how
long, and for what procedure a patient can be admitted to the hospital.
Major complications can set in with an office procedure that used to be
performed in hospitals or if patients are forced to leave hospitals early.
Many doctors are as angered as their patients about the present and future
demolition of health care. As insurance company CEO'S get rich while
slashing the amount they pay for services, doctors are forced to reduce
fees or quality of service or hope that patients can pick up the tab.
     Anna's fury returns as she sounds a universal alarm. "Our horrible
insurance company, I hated them. All of a sudden, doctors I'd gone
to forever weren't in their plan and we were paying a higher percentage!
You don't realize what's happened until you're sick. You're a prisoner
of the damn insurance and drug companies. The only reason bone marrow
transplants finally got approved was because they were sued for
seventy-five million dollars in California. That made insurance companies
go, "Whooops, we'd better do something."" Luckily Jan was able to switch
to an insurance company that surpassed their expectation. "You have a
certain amount of out-of-pocket fees for an entire year. By January, the
first month, I already hit the maximum, one thousand dollars. From then on,
Jan's insurance foots the bill. Between all of the medical tests, weekly
blood counts, drugs that keep my white and red cells operable, plus the
chemo and all, I cost about ten grand a month. I told Jan, "I'm not a cheap
date.""
     How can any one of Clinton's estimated 58 million annually uninsured
afford cancer? "They can't. Nobody understands that. I can sure relate
to people with HIV. Every couple of days, something new happens [in
clinical studies or FDA approval of new drugs] and I'm like, "Wow!" Then I
think about those who don't have insurance to get these new drugs. Or
there's some company with a gun to your head saying, "Here's your bill.
Whomp! We're going to keep your family in debt forever." The thought of
doing that to your family is so burdensome." And for millions in the United
States there is no choice. A Washington nurse watched her
     family collapse in anguish when they could not afford a $350,000 bone
marrow transplant hospital down payment for her brother after he reached
the limit on his between-jobs coverage. He died of leukemia.
     That fall, Anna's joy in knowing that the insurance company would
finally pay for her bone marrow transplant is fleeting. She has too many
liver tumors to be eligible. No one can understand the incredible emotional
stress the terminally ill endure as they ride the roller coaster of hope
and despair. Anna now returns to a conventional chemotherapy, Adriamycin,
in hopes that this will shrink her tumors enough for the transplant.
Exhausted and demoralized by her fruitless battles with the government and
insurance companies, Anna now experiences the side effects of chemotherapy,
the poison that kills good cells as well as cancerous cells. She is sapped
of energy by low blood counts and loss of iron, and in pain. "I kept saying
that it was good pain--"Go, you buddies, go"--because chemo was attacking
the bad guys. The pain was actually quite bearable," she recalls, then
describes a condition that makes medieval torture sound pleasurable. "My
guts were on fire--I would compare the pain to getting a bad sunburn and
peeling the skin early, exposing it to the elements before its time."
Except that the fiery feeling was on the inside, in Anna's stomach and
intestines, as the drug worked through her body, killing the lining cells.
     "I lost my hair, of course, but they don't tell you that you have
tufts left. Not all the hair comes out and it is much better to shave off
the remainder, or you really look stupid." Nor do they tell one that the
loss can be total. "When your eyelashes go, you have no protection." It is
like having no windshield wipers when it rains. Although shielded slightly
by her eyeglasses, everything-- dust, rain, snow, wind, and, especially,
sweat --pours into Anna's eyes. Her soaking hot flashes continue unabated.
     At this time, however, Anna feels that she might win this race for
survival. This is no denial of reality, because Anna is clinging to a
possibility--the cure-all concept of a bone marrow transplant. At Miller's
suggestion, Anna visits Dr. Nancy Davidson, a breast cancer oncology
specialist at Johns Hopkins, to get another opinion on her chances for a
bone marrow transplant.
     "She's very nice," says Jan, "but most people that Ken sends up there
     don't like her because she's very straightforward and a lot of people
want to be coddled, don't want to hear bad news. But Anna's like, "Whatever
it is, give it to me straight." The first thing that Nancy said was that
metastatic breast cancer is not considered a curable disease. That was her
starting point. You go from there. The name of the game, medically, is
to stretch it out as long as you can."
     They had blocked such reality; while never denying it, Miller had not
stressed that "you don't survive metastatic breast cancer," says Jan.
Davidson's bluntness left no doubt. "It was two days before Christmas,"
recalls Anna. Davidson told Anna that she had to have a 50 percent
reduction in her tumors to be eligible. In the darkened lab, the doctor
held up Anna's X rays to the light and pointed one by one to the opaque
markings. They were tumors. Ten of them. Two huge tumors literally stopped
Anna in her tracks. "I had been told that one was eleven centimeters, but I
had never seen the pictures, and I was just absolutely flabbergasted at how
many there were. One was monstrous--six inches!" She gulped for air. Jan
steadied her, his arm around her.
     They stumbled out of Hopkins and said nothing, a horrible panic
setting in as Jan wheeled the car out of the parking lot and drove through
the old district of Baltimore and past Camden Yard Baseball Stadium. That
cold December day seemed grayer and colder during the long ride home. Both
began to sob and sob. She kept repeating to Jan, "Oh, my God, did you see
the size of those?" Even through her tears, Anna could not resist a play on
words. She repeated over and over, "I've got sausages in my liver!" Anna
recalls, "At one point, Jan said the only thing that ever made my breath go
away. He didn't yell, didn't shout. He said it gently but forcefully-- "If
you don't spend time with the kids, I will never forgive you." Anna said,
"I hear you.""
     Both of them had entered a new zone of anticipatory grief,
experiencing daily blips of sorrow--for the past, for the present, for the
future. Eventually the shock wore off, but there was that undercurrent of
waiting, wondering, trying to gauge a lifetime and how much of it was left
and how and when it would vanish. No longer "if."
     At home, the couple was thrown into a staggering paradox of
duties--wrapping presents, decorating the house, and preparing for visiting
relatives, as they wondered if this was the last Christmas Anna would see.
     Viewing those tumors had brought thundering certainty. "Being a
fighter, Anna could deal with the pain, but she hadn't dealt with the sense
of time and the unpredictability of her illness," recalls Jan. Now she
moved to another plane--vowing to fight, to stretch life out, for as long
as she could.
     Anna, the woman of countless careers, knew what Jan was telling her
about spending time with the children. She would have to give up the store.
"I decided to finish the chemo series because earlier tests showed some
improvement. Then I would decide." Anna was borrowing time, trying to avoid
those sausages in her liver. Anna finished her Adriamycin cycle. "If
anything, I had more cancer in the liver. So it had not worked. I said
to Jan, "That's all I need. I'm closing the business."" Anna immediately
started a chemotherapy drug just on the market, Taxol, which was touted as
miraculously shrinking tumors. "And that was the clincher. Taxol creates
the neuropathy [affects the nervous system] in my hands and my feet. All
of a sudden, walking back and forth and sitting on the floor and then
getting up to get shoes--I couldn't do it. I realized that the Taxol was
going to take me down if nothing else. But Taxol was really shrinking those
tumors, and I was so happy with the results that I asked Ken what we could
do to really kick some butt with it."
     Anna is so different from most of his patients; her animated
imagination--a necessary component for her upbeat survival-- causes Miller
to smile. "I reminded him of the Borg episode on Star Trek: The Next
Generation, where they kept changing their defensive field frequency so
that the Borg couldn't lock on and wouldn't know what was coming at them
next. I asked if we could do the same--confuse the little cancer buggers.
So we doubled my Taxol dosage. The effects on the tumors were excellent:
many shrunk; some disappeared.
     "At that dose, I suffered ridiculous side effects, totally losing my
nerves in my feet, legs, and fingers, as well as the ability to regulate my
body temperature. I would be freezing, then the next instant become
Hot-Flash Woman. Two days after taking the Taxol infusion, every nerve
ending in my body was on fire. My fingers curled up into my hands and I
would lie in bed not moving, fearing the act of breathing because it sent
waves of nerve spasms. But it was working--so who's to complain?" Anna
cautions, "No two people have the same kind or depth of pain. The same
chemo can be a comparative snap for someone, while another is tortured
by it."
     In the winter and spring of 1995, Anna is dealing with the emotional
and physical trauma of saying good-bye to what she knows might be her last
career. When Anna finally made the decision to close the store, she did it
"literally in a month," but she mourned the loss of her pride and joy
forever. Like her mother before her, this career loss cut deep, especially
since Anna could see progress. "If I could have gone through this fall, I
would have had a great season!" Anna's eyes fill with tears. "I still get
notes from customers saying, "There's no store like yours. We really miss
you.""
     Anna refuses to call the closing of her store the death of a dream. "I
don't look at it that way because part of the dream was just being able
to do it. Something I'd never done before." Her smile flashes in
remembrance. Yet the first month was "very hard" on Anna. A shadow of
sorrow touches her eyes. Then comes her upbeat response. "We decided,
"Okay, we're going to Florida for Easter and we're all meeting at the beach
for July," and all of a sudden, I had things to look forward to. And I had
a couple of freelance marketing jobs that filled in the gaps until I could
settle into, as I called it, my retirement. And that took a while."
     During this period, the double dose of taxol "did me in. I would walk
with no feeling from the knee down, no feeling in my fingers or feet, but
the rest of me felt shooting nerve pain. Some days, I couldn't get out of
bed--the pain of moving was blinding. I felt guilty because my poor kids
could not even hop up on the bed with me without causing extreme agony.
Then the children felt guilty. It is so horrible to think that the simple
act of snuggling with Mom can become a negative if I react to the pain
without remembering to let them know it is not their fault."
     On better days, she turned up for her spring softball team, cheering
them on even though she couldn't run. By the end of the summer, her toes
wouldn't move. "I was in chronic pain, walked like a cripple, had no
control over my balance, and was taking two Percocets every four hours for
pain. Hardly a day at the beach."
     Still Anna managed to visit her father at Easter, to share the summer
with Jan and the children and friends. One golden beach day is captured in
a photo that rests on the piano. A group of Anna's Richmond friends sit in
a row on beach chairs, young, fit, good-looking baby boomers. Anna's bald
head is tanned in perfect harmony with her face and lithe
     young body. A glistening turquoise bathing suit cannot compete with
her even more glistening smile.
     The jolts and losses, the pain and fear, the shock and struggling
acceptance of limitations--all of those horrors that Anna experienced for
more than a year since the summer of 1994--are nowhere reflected in that
photo taken in the summer of 1995. With just a slight sigh, Anna says of
her period of hard transition, "Well, so that's the end of that chapter in
my life." A slight pause. "Hey, look at it this way. I'm still alive!"
     CHAPTER FIVE
     Resilience, Anger, and Humor
     "I hate the fact that so much regarding the treatment of this disease
is a big crapshoot!" says Anna. "Again, this is a control issue for me. As
we make decisions, I still wonder if these are the right ones, but there is
no data to support or refute them. I feel unconsolable regarding my
treatment and Jan and I are constantly searching for options that make
scientific sense."
     Fired by righteous anger, Anna makes an impassioned plea for the media
to think of the millions of ill people in their audience. "I wish I could
shoot every single news anchor and reporter who starts their ten-second
teaser with "A new breakthrough in the cure for breast cancer, the story at
eleven." Nils gets furious when he hears things like this, knowing that so
often experiments in animals do not pan out for humans. The false hopes and
wild-goose chases that this reckless reporting creates in terminal cancer
patients is flagrantly irresponsible and cruel. Think of the thousands of
men, women, and children who are sent into a tizzy of futile hope. There
may be the few on the bell curve for whom so-called miracles have worked,
but these are hyped out of proportion. I have known people to follow
irrational treatment courses--which, in essence, killed them faster--from
bits of information they heard on the news about claims of curing cancer.
The wish to stay alive and fight cancer causes many people to do desperate
things--and there are enough quacks around, bleeding them of funds,
offering futile hope. And the media does the same damn thing! Advancements
have come from scientists finally identifying things about cancer cells and
proteins. But the
     breakthroughs so far are not about curing cancer but about developing
drugs to slow the process down. That is a far cry from a cure!"
     Nevertheless, some breakthroughs have added time to Anna's life, such
as the newly marketed Taxol, which she took for nine months. Now, in the
autumn of 1995, Anna learns that Taxol is no longer working. "I got a lot
of time out of it, so I'm not complaining." In October, Dr. Miller imposes
what Anna terms a "drug holiday," to build up her immune system. A zest for
life returns. "I was amazed at how badly I needed it until I began
to really feel strong, whole. Only when you feel good do you realize how
poorly you felt, how little energy you had, and how depressed you were!"
     It is rare to hear Anna admit that she had been depressed. Her friend
Lockie laughed when she once related how Anna, in a telephone call with
another friend, Tina, admitted that things were a little hard and that she
didn't feel well. "Tina just died laughing and started clapping over the
phone and shouted, "Yea! Anna's depressed; this is something I can finally
understand!"" Another time, Anna called a friend who complained that her
fighting optimism was too good to be true. "You're going to be pleased,"
said Anna. "I got depressed today!"
     Her sister, Roseann, explains, "That's part of her personality, the
way she deals with it, because she has a family and she has children and,
to her, whatever time is with that family and those children is precious.
She's not going to change. That gives her her joy and her happiness. I
don't think she feels she can do much about the other."
     "Depression?" says Anna. "I can't do that. I get bored with it. This
really sounds dumb, but even when I try, I can't stay depressed for long.
Like now; I went for my MRI on Monday and I'm back in trouble. The liver
has more tumors in it. Next week, I'm getting a stomach and a brain CAT
scan. Ken just wants to make sure--" She doesn't finish the sentence. "When
I learned that the tumors were growing again, I was only able to be
depressed for about half a day. There's too much going on, I don't want
to mope. I've never been one to sit around and wait for things to happen
to me. Anger? Yes! Depression? No." She will start her new chemo treatment
in November. "So we're about to boldly go again into some new uncharted
waters. Not the best of news, but, like I said, if that miracle's out
there, hey, I'll take it. But if not--" Anna shrugs.
     Anna speaks to a strong universal emotion when she mentions the word
"anger." "Anger is almost always present in every significant loss,"
explains Kenneth J. Doka, Lutheran minister and leading death educator. "If
you are angry, you can't not be angry. The question is how to use your
anger." For the person who is dying, anger, lots of it, is validated by the
professionals who advise caregivers that it can take forms of unpleasant
ferocity at everything and everyone around them or it can be a more
compassionate venting that seeks no target.
     "They are angry because of the losses they are experiencing, and they
are angry because others-- apparently for no justifiable reason--are
enjoying happy, healthy, and satisfying lives," write Charles and Donna
Corr and Clyde Nabe in Death and Dying, Life and Living. These authors
instruct caregivers to expect such strong feelings and to learn to listen
empathetically. *1
     "Anger is a natural response to situations where we are faced with
more and more limitations and fewer and fewer options," write Ronna Fay
Jevne and Alexander Levitan in No Time for Nonsense, a book that Anna has
underlined, which emphasizes that getting out one's anger leaves more room
and time for joy and caring. The importance is "where you target it." Among
their suggestions, Anna marked the following: "Hang an old duffel bag
stuffed with old linens or clothes where you will go by it often. Put a
tennis racket beside it and enjoy smashing the duffel bag when you go by."
"When having a "mad," hang up a sign that says, "If you are intending
to cheer me up, go home."" "Go to the mirror and say all the things you
fantasize saying to whomever you are angry with." "Have a "getting even"
price list. What is any given frustration worth? One hour of tolerating
George may be worth an uninterrupted bubble bath." *2
     Anna felt a certain kinship with such helpful but humorous
suggestions. For many who are ill, humor is one way of venting anger in a
nonconfronting fashion. Today humor is recognized for its healing and
painkilling power; it is the subject of conferences. It relaxes the body,
which helps resting and healing. Quite simply, it makes life more bearable.
"It distances us from the indignities of diagnosis and treatment. It helps
restore our common humanity. It dispels fear." *3
     A joke to deflect anger comes to mind: "I understood most of your
message, but would you mind repeating that last scream?" *bled And Woody
Allen expresses a common thought, "I don't mind dying, I just don't want
to be there when it happens." Unfortunately, humor is not universal.
Although it may sound tasteless or cruel to those who weren't there,
humor's shock value in a tensely serious moment among the ill and the dying
can create invaluable levity. One nurse studying to be a bereavement
counselor recalls the humor of her Irish family. When her mother
accidentally tripped on a cord that disconnected her dying uncle's IV tube,
he joked, "So what's the rush--you aren't even in my will!" When a young
man who had terminal cancer received one of those annoying phone calls
soliciting life insurance, he replied, "Buddy, do you have the wrong
number!"
     Gallows humor among hospitalized Vietnam veterans was a stinging
antidote to self-pity. Men remember the crucial bonding of black
humor--such as dedicating "You'll Never Walk Alone" to a double amputee.
Said one veteran with no legs, "That lack of pity is the only thing that
saved me." *5 Along those lines, a heavyset woman with an amputated leg was
sitting in a waiting room, feeling shy and self-conscious in her
wheelchair. When one of the office staff asked, "How are you doing?" the
woman said, "Fine." The aide then said, "How are the ballet lessons going?"
The woman gasped, then laughed so hard, she almost fell out of the
wheelchair and the other patients joined in. Then the woman topped the aide
with "Wait until you see my tutu!" *6 It was a great icebreaker in a gloomy
situation. Marilyn Schwartz, a witty Dallas Morning News columnist much in
demand as a speaker, joked as she saved for breast reconstruction surgery
following a mastectomy. In a takeoff on Walking for Dollars, Race for the
Cure, and so forth, she told friends, "I'm Talking for Tits." During a time
of remission, Anna, the former copywriter, cracked about the book in
progress, "This may be the first time that I've missed a dead'line."
     Anger and macabre humor, of course, are not reserved for patients
alone. Caregivers and family members can experience plenty of both. Often
their anger is compounded by a sense of helplessness. It is not uncommon
for them to rail at doctors, hospitals, insurance companies, hospices, or
anyone else in the medical system who is not curing the person they love.
"It's perfectly legitimate to complain to everyone around
     you about your anger at the doctors or why somebody didn't do this or
that, or find fault with the manner in which someone dealt with his or her
illness," comments Ken Doka, "but the question is how you use that anger,
whether it's destructive or constructive. When you take your criticisms
to the patient, who is really struggling with "Did I make the right
decision?," you are not being helpful."
     Much of Anna's anger is directed in general at medical incompetence
and the frustrating state of medical science. One passage she underlined in
No Time for Nonsense fits her feelings: "Institutions don't like anger. ...
Angry people often say what they think, feel and want." The horror of her
wrong-rib surgery, her insurance and medical travails, generated Anna's
never-ending crusade to warn any sick person that he or she cannot be too
vigilant regarding doctors, records, treatment, procedures, tests, results.
"SWITCH DOCTORS IMMEDIATELY IF YOU REALIZE THAT YOU ARE NOT BEING LISTENED
TO NOR GIVEN THE TIME AND ATTENTION THAT YOU DESERVE AND HAVE PAID FOR!"
she writes in capital letters.
     Newspapers contain far too many stories of surgeons operating on the
wrong leg or arm or breast, for example, to say nothing of errors that
cause a scandalous number of hospital deaths. A Harvard School of Public
Health study bears repeating--hospital-related errors in treatment kill
180,000 Americans each year. *7 Only when doctors experience the same
disasters as their patients do they get exercised enough to write about it.
How to Get Out of the Hospital Alive was written by Dr. Sheldon Blau after
he developed a life-threatening infection in his bloodstream following
surgery, an all-too-common occurrence. In writing about hospital-caused
errors in medication, in surgery, in laboratory tests, and just in
admitting patients, Blau offers a nostrum known to any hospital patient. It
can be expressed in the form of a riddle: "How many people does it take
to be sick?" Answer: "At least two--one to be sick and one to run
interference." Only after his own experience did the doctor write, almost
in wonderment, that "the most important thing a hospitalized patient can do
is to bring in a relative or close friend who will observe all and question
everything being done." *8 He suggests what should be a given when
undergoing an operation--mark with indelible ink the area or limb to be
cut.
     Yet, despite horror stories, a patient mentality still exists, that
"the hospital is "Mama" and they're going to take care of me," writes Blau.
Anna concurs. "Our society still suffers under an almost castelike behavior
when it comes to assuming instant respect for doctors who, as yet, still
live in the safety of that myth. I have had too many medical errors
to believe that doctors are infallible."
     When Anna was a child, the dentist nearly drilled the wrong tooth
because he read her brother's chart instead, another doctor removed the
surrounding skin on the wrong side of a gangrenous toenail. "I am like
everyone else, an ordinary person for whom things sometimes go wrong --I
suspect that what makes me different is that I catch the mistakes," she
says. "Most patients don't even know to be on "error watch." I've decided
that the two worst doctors are radiologists and anesthesiologists,"
complains Anna, "because they rarely deal with their patients. Even though
I am paying for their services, they only communicate with my referring
physician. You are not informed about how much the anesthesiologist
charges. There you are, woozy from presurgical relaxers, and a perfect
stranger waltzes up, announces that he is your anesthesiologist, asks you a
few questions, and shoots you up! Why does the patient have no choice in
what is a very important part of a surgical procedure? What if he has a bad
track record? How can a patient help control insurance costs when these
facts are completely hidden? I have had several general anesthesia
surgeries and only once was I informed (in my prerelaxed state) of what
would happen. I have even awakened on the operating table--I ask you, Is
this supposed to happen?!"
     Anna emphasizes a "need for change" list. "Listening to a patient
describe his body symptoms, really listening, is something that doctors
should initiate. Patients have the right to learn about all doctors and
to discuss their case with anyone who is a part of their diagnosis or
treatment--radiologists, anesthesiologists, and so forth. Doctors have too
many patients, crowd their appointments, run all over in too many
hospitals, and that causes errors." Also there is the problem of the system
as doctors rely on clerks to pull the right files or keep accurate records.
"How many times have you witnessed your doctor telling you what is going on
while he is reading your chart to get up to date? There you have it. That
is all the time he spends on you. Enough said."
     The week before she resumes chemotherapy, Anna flies to Rye Brook, New
York, for a visit with her sister, Roseann. Anna whoops it up with Cliff in
the kitchen, sampling his exotic beers; he is an aficionado from his days
overseas with the Wall Street Journal. Anna is at home in their house with
its high-cathedral-ceiling living room, sweeping windows, huge modern
black-and-glass cabinet holding the Ming vase that belonged to her mother.
Many of Audrie's jewelry pieces went to Ro--"Mom and Ro are jewelry
junkies," jokes Anna. Ro designed striking rings out of gold and
semiprecious stones and wears many at a time, calling attention to her
attractive hands.
     Upstairs in her bedroom, Roseann's eyes flood with tears when she
talks of Anna. She continues to grieve deeply for what might have been. "My
feeling is, it didn't have to be," Ro says angrily. Over the years, her
argument remains the same, that Anna should have had an adrenalectomy and
her ovaries removed, as she had. "She's still got that damn estrogen
supply." When Anna comes upstairs, the evening takes on aspects of a
slumber party. They laugh at "rubber chicken" inserts for bras. "The
insurance companies don't pay for wigs, but they pay for bras every two
years," says Anna. "How I've grown! I started with a size four and am now a
size eight."
     But soon the old debate surfaces, as always. Surgical removal was the
only answer, says Ro. Anna reiterates that this is no longer done and that
tamoxifen is supposed to do the same thing chemically. "Why did this
happen? Who knows? Every six months I was checked and I was fine." Ro says,
"With your history, they should have checked you more than every six
months!" Anna recalls her sister's prodding talks over the years as she
kept asking if Anna thought tamoxifen was working. ""Man, I don't know if
it's working," I'd say. "Something's weird with these hot flashes."" Ro
vehemently interjects, saying that Anna's doctor did not monitor her
enough. "When something falls out of the norm, you start treating it out
of the norm! You watch it more closely so if something's going to go wrong,
you have a better shot at catching it."
     Anna sighs and repeats that tests revealed no problems. Usually she
defends Miller, with whom she has a special rapport, but Anna's anger and
ambivalence builds as her sister forces her to rethink the tamoxifen route.
"It's fucking killing me," Anna finally storms irrationally. She says
     to her sister, "The irony is that your success with the adrenalectomy
helped them create the medicine that is now killing me." Perhaps an
adrenalectomy at the beginning would have helped, says Anna, but it is too
late now that cancer has spread. Ro stubbornly reiterates, "Get the goddamn
estrogen out!"
     Anna says, "The problem is, you get locked into a protocol, based on a
numerical average for a huge group of people." Her expletives punctuate her
sentences as Anna revs up. "They're not going to waste their effing time on
one person in a billion who doesn't fit their "protocol.""
     Later, Dr. Miller addresses the sisters' discussion. "Unfortunately,
even though Anna and her sister's breast cancers were both hormonally
responsive, that doesn't mean they would necessarily act the same," he
says, justifying the disuse of adrenalectomies and why the procedure would
not have been done in 1989. "I have never heard of an instance where they
were done. Twenty years ago, a lot of the therapies we have now weren't
available, and so perhaps the only thing that could have been done with
Anna's sister is hormonal ablation [surgical removal]. They used
to sometimes remove the ovaries, the adrenals, and the pituitary gland.
That's a terribly painful, difficult way to have to live the rest of your
life."
     He defends his initial course of treatment for Anna. "A woman who had
negative nodes, like Anna, and a small cancer, the overall statistics would
say that approximately eighty percent of them--it depends on what study you
read --are cured or long-term survivors. Unfortunately, for unknown
reasons, a significant portion of breast cancers--that twenty percent--will
recur.
     "Oncologists for the most part, and I speak for myself, are not
creative. There are books and books of protocols and we tend to use other
people's protocols for two reasons. One is you know what efficacy to expect
and, two, you also know what are the side effects. Therefore you can give
very specific dosages." If one doesn't work, oncologists try a second and
third regimen, in hopes of confusing the cancer cells with new poisons.
"And if they don't work? You don't throw up your hands and say, "Sorry,
tough luck." Sometimes it's fair to say to people who've been through
several regimens that the chance of success with the next is potentially
low and here's what side effects to expect, which may be severe, and do you
     want to do this? At each step there has to be the option of saying,
"No, I don't want this." And Anna's never been like that."
     Ken is aware that Anna knows the truth, that "most of the time when a
woman has a recurrence of breast cancer, it is terminal," but he also knows
that she will not give up. In some ways, Miller is as optimistic as Anna.
"Perhaps she can have a bone marrow transplant later, and perhaps with
super-high-dose therapy, she would stay in remission. If we're going to do
these things, we always should aim for a home run even though we may not
get there. For women who have recurrence of breast cancer, there is some
prolongation of and improvement in the quality of life with treatment.
Taxol, while not a home run for Anna, did keep the disease stable for a
long time."
     Miller is asked about Ro's view that Anna should have been checked
more frequently than six months. "It makes me sad that Anna's sister is
upset." His voice takes on a defensive, hurt tone. "I try to do the very
best job I can. I think Anna feels that way and Anna is a wonderful person
whom I care about deeply and I feel very comfortable that we've done
everything that can be done. The problem is not when it recurred, it's that
it recurred." Anna cannot put to rest her suspicion--"I have no proof that
the cancer might have been detectable earlier because my tumor marker
reports are missing in my January 1994 file--yet to go from cancer free
to a tumor marker of two hundred eighty-five was a huge leap for a
six-month period." Miller has no idea what happened to those long-ago
records. He sighs. "Unfortunately, studies show, diagnosing the recurrence
early does not portend a longer survival. Sadly, finding it a month or two
earlier I don't think would have changed anything. It's one thing when it's
primary cancer, but when a breast cancer has recurred, it's a different
issue."
     Doctors are always on the front line when it comes to the frustrating
ire of patients and family. Sometimes the anger is legitimate; sometimes it
is based on a shoot-the-messenger fury; sometimes doctors are scapegoats
for viciously unfair diseases that destroy one's body. Miller is among many
who agonize when things go bad. Oncologist E. Roy Berger describes the
"great fear and anxiety" he feels about telling the truth to patients: "It
seemed so difficult to get this right ... for each patient, to say it the
right way, to do it without destroying all hope, yet
     without lying, so that ... the patient would believe me when I said I
would and could keep them comfortable in the end. ..." If he fudged the
facts, he might avoid the lashing anger of the moment. But, he asks, "If I
told the whole truth would I avert the inevitable anger that is oftentimes
aimed at me for holding out too long?" *9
     Miller sees adult men and women with cancer, about half of whom are
breast cancer patients. A third of his patients are receiving adjutant
chemo and radiation therapy and are doing well, another third are on more
minimal therapy, and a final third are in advanced stages. Among those in
advanced stages, "there is this sense for all of my patients who have done
exceptionally well--and Anna's one of them--and for me too, that it should
continue that way. For large-cell lymphoma, the cure rate today is around
seventy percent. Unfortunately, some of my patients are part of the thirty
percent. And you think, "Oh, my God, what did I do? What could I have done
differently? Should I have given x instead of y?"' The problem is that
cancer can be a deadly disease." Miller adds as vehemently as he is
capable, "A rotten, rotten disease."
     How do you comfort yourself?
     Ken answers slowly. "When the outcomes are not good, I do try to say
I've done the best I can to fight this cancer, to give someone a better
quality of life, a longer life, I hope, and to respect their wishes.
By giving people a choice and wanting them to participate, at least I feel
like I've tried to be supportive of their wishes. There are days where I
wonder if I could have done a better job. What that reflects is that I'm
not perfect. But I feel I do the best job I can do."
     Despite advances, Miller is concerned that he sees more young women
with breast cancer now than when Anna's occurred in 1989. "I don't think
it's simply a matter of detection or that there are more women
demographically in that age group. Why? Nobody knows." In 1995, the public
battle over whether to do mammograms under age fifty is raging. Miller
rails against those who argue that women do not need them before fifty.
"That's crazy! Insurance companies don't want to, but when you talk about
an individual's health, this whole concept of cost-effectiveness is
irrelevant. The forty-two-year-old woman who has a mammogram and we find a
lesion, it may save her life. They should be done and paid for by insurance
companies annually by age forty."
     Miller approves of Anna's need to be on top of every test, every
examination, every drug. "I think people do need to be involved." Miller is
a proponent of positive thinking and feels strongly that Anna, with her
upbeat approach, will continue to do better, both with the disease and in
dealing with impending death, than those who hold out little hope. He is
bolstered by many in the health field who see the same results. "I tell
people when they start on chemotherapy there are two choices. One choice is
where you come in and say, "Oh, my God, I can't believe I'm doing this,
this is the worst thing. This is horrible. And it's not going to help me."
And then there are the others who say, "You know what? I plan on doing well
and I'm going to picture those cancer cells actually melting, shriveling,
and deteriorating and being floated away out of my body." They're less
likely to have side effects and more likely to have benefit.
     "Cancer is a disease that is out of people's control, and so taking
the reins, adopting a positive approach, is an attempt to bring life back
in the person's control. Even if it doesn't include quantity of life--I
think it does-- it improves quality of life. My best case for Anna would be
that her tumors respond with continued treatment and she goes
into remission. Then we do a bone marrow transplant and she stays in
remission.
     "Much of my work is based on the patient's goals. A lot of it becomes
their choice. Often I'll say, "You know you've got a serious cancer. We
have these choices." Sometimes people say, "Doctor, give me everything you
have, I want to plug away and I really don't care about the side effects."
Other times people say, "Doc, don't give me all this toxic chemotherapy
unless there's almost a one hundred percent guarantee I'm going to get
better." Someone who's thirty and has lymphoma may say, "You bet I want
absolutely everything done, I plan on getting well." And someone who's
ninety and has colon cancer says, "Absolutely not." For him, it's a
quality-of-life issue. Most cases are not that clear-cut and fall in the
middle: "Do some chemo and see what happens." Many difficult issues go
into the decisions that people help make about their care."
     "Hey there!" announces Anna as she enters Dr. Miller's waiting room.
Everyone in the office brightens. Anna sticks her face up to the admitting
window, lifts her eyebrows like Groucho Marx, and says, "Without chemo--see
how my eyebrows are growing back?" One of the women
     says, "Yea!" They cluster around Anna and her flow of conversation:
"What are you doing for Thanksgiving?" "Are you going away?" "Families
coming? Oh, neat." A pretty blonde assistant tells her she is tired and
going home early. "Got a cold?" "No, I'm pregnant. Starting my sixth
month." "Gosh," says Anna. "All the time I've been coming in and you didn't
show--and you didn't tell. You look great. Listen, if you want a place
to stretch out and rest during the day, I'm just five minutes away. You can
nap, put your feet up." The woman smiles gratefully.
     Other patients flip absentmindedly through magazines or simply stare,
waiting for checkups or chemotherapy treatment or dreading answers from
tests. Not a person is smiling. Two women, obviously together, do not
speak. An older man sits next to Anna. She admires his multicolored
tam-o'-shanter. "I have a reason to wear it," he says, with a smile,
doffing his hat to show a bald head. "So do I," says Anna, whipping off her
green turban with perfect timing--"only you have more hair than I!" The man
chortles, but the others, caught in their own circle of worry, fear, and
depression, just look at them. This is not a joking matter, they seem
to say.
     As Anna walks down the hall for her treatment, she says, "Did you see
how gloomy those people are? It gives me the creeps. That's why I try
to lighten it up. Those people in the office hear only complaints,
complaints. Can you think of how grim that must be?" Anna's steady patter
is partly pure Anna and partly a conscious attempt to quiet her anxiety.
There is always that flutter of nerves, the sweat, the stomach flip-flops,
before she starts another treatment.
     Anna sits in a tiny room, barely large enough for two chairs, a small
TV on a table. Autumn sunshine and a few dried leaves dangling on spiky
branches are visible through the half-slanted Venetian blinds. Anna comes
prepared in a sweat top with a convenient zipper. She unzips it and bares
her life port, above her left breast. "This shunt is built into my chest.
It gets to the bloodstream, zap! So it can be a real rush."
     Dr. Miller's head nurse, Suzanne, brings in the two drugs she has
prepared. Once again, Anna's joking imagery is a therapeutic force. Doctors
in many fields encourage positive imagery, feeling that attitude plays a
vital role in how patients respond to medication. Some suggest, for
example, that their patients picture their medication as white knights,
bringing help.
     Some of Miller's patients view their drugs as Rambo-like characters
kicking out the bad guys, others as gentle swans carrying their pain and
cancer away. Anna needs no encouragement. She chuckles at the names of the
two drugs she is taking, Mitomycin and Vinblastine. "They sound like
cartoon characters." She lowers her voice as an announcer might in a TV
cartoon--"Mighty My Sin meets Vin Blast Teen! Picture that any minute the
little green alien creatures from another planet will zap us with deadly
poisons as they begin their attack on Earth cancers. ..."
     As Suzanne attaches the opening of the plastic packet of blue liquid
to Anna's life port, Anna says, "Oh, this is interesting. I've never had
blue before," as if she were buying a dress. Suzanne says, "Let's see,
you've had red, yellow. ..." "Yeah," says Anna, "gotta be fair to the color
spectrum."
     Just then, Anna gets a taste of the medication. Oncologists have candy
on hand like psychiatrists have Kleenex. In anticipation, Anna had grabbed
a fistful of multicolored candy balls on her way in. "Ohhhh," she says,
pressing her head back on the chair. Her face flushes. "Oh, this really has
a horrible taste to it." She grabs a candy and sucks on it. Suzanne dilutes
the blue drug with the second drug, which eases the taste. "At first, it
makes my heart pound," describes Anna. "And there's a very chemical smell;
it's almost like tasting metal." Soon Anna is rattling on as always. As the
chemo bag empties into Anna's body, she says, "This is so much easier! I
used to sit here for hours, the bag was so huge. Most patients take a drug
that makes them fall asleep." She points to the VCR. "I'm probably the only
one who sat here and watched movies."
     Dr. Miller comes in and Anna greets him enthusiastically. "This drug
is too wonderful! It's short, quick." Miller smiles at her enthusiasm. He
tells Anna that the medicine "stays in the cancer cells," employing
positive suggestion; "every minute, they will be shrinking." Anna outlines
her four-week cycle. "And then--wheeee!" she says, in mock pleasure. "We
start over again."
     A giddiness takes over as Anna leaves the office, as if she had been
let out of school early. She drives through the mall. "My shoe store was
right over there," she says, pointing. At the deli, she attacks fried onion
rings and a chocolate biscotti and decaffeinated cappuccino. "I'm really
going to test the old stomach."
     Lights are glowing in Anna's house as she gets out of the car and
walks toward her family. She is still elated that the day went well, but
she has no illusions. "At best, this is borrowing time. Even the bone
marrow transplant, I think, would be borrowing time. It's so very new, they
don't have much history on it."
     A few days later, Anna writes, "As strange as it seems, I find that
the more I know about my disease and its progression, the less I feel
panicked by it." Studies support Anna's view. Those with a positive
proactive involvement often fare better than those who leave it all to the
doctors. Some sense of control over an uncontrollable disease is the key.
"The more I can feel some control with respect to my treatment, the easier
I can cope with knowing I will die of this disease. If I were to blindly
put my faith in a doctor, asking no questions, not participating in the
treatment, I am quite sure that by now I would have given up hope and I
would be dead because my mind would not be caught up in a struggle for the
preservation of my being."
     
     CHAPTER SIX
     Coping Day by Day
     Throughout October and November of 1995--the drug holiday months
before Anna's new chemotherapy--she revels in the physical strength flowing
back into her body. Emotionally, the roller coaster of the inevitable but
wrenching redirecting of her life produces upbeat moments for Anna as well
as those of hopelessness and, yes, depression. Her despairing moods are
fostered by waves of sorrow about all that she would miss if she died,
particularly Jan and the children. More often, Anna's optimism takes over.
"Hey, I'm living with cancer, not dying from it--yet. I may beat this
sucker!"
     No one can observe her pain as Anna walks as forcefully as she can, or
when she stands, straight and tall--as she does one autumn afternoon in the
foyer of one of her favorite haunts, The Cheesecake Factory, near
Bloomingdale's in Maryland's White Flint Shopping Mall. She orders a
cheeseburger and a beer and talks a mile a minute--about her children's
homework ("I really have to sit on 'em to get it done") and about the Olney
Ballet, where Lindsay has been dancing since she was four and Anna has been
a helping mom. "Two weeks ago, they said, "These kids need a parent adviser
and it's you." I said [dryly], "How did you know?"' Now I'm doing
everything --using my marketing skills. Nothing had been done. I said, "We
don't have time for this.""
     Once again, Anna finds the pony. "I've had this setback piece of news
about the tumors and yet here I am, working with great kids once again.
Part of me still wants to be an owner. I've been too long in the corporate
world. But I'm a fast one to put regrets behind me. Mine is not a coulda,
     woulda, shoulda life. I don't live in the past and I can't see the
future." Anna cannot always keep to this maxim; emotional nosedives occur
when she obsesses about her children or reflects on a lost career.
     Anna's major recreation is her family; now more than ever she hordes
her moments. She almost reluctantly lets a friend take Ellery and Lindsay
to a movie and for pizza one day. She is happier with them around and
having adult friends come to the house. "They know all of my friends. I was
that way with my parents. A lot of kids are totally separated from their
parents' friends and lives. I think that's a shame."
     Kaleidoscopic scenes of Anna that fall and early winter: Anna clowning
with her friends from Richmond, who surprise her with a visit to celebrate
her forty-third birthday on October 2, treating her normally, with the same
irreverent humor of days gone by, which is so important for those who are
ill ... Halloween glitter gunk all over the glass coffee table as Anna
helps, but mostly observes, Lindsay's wild creativity ... An afternoon in a
nearby suburban indoor pool--a state-of-the-art gymnasium with high
ceilings of glass, lit with sun. Anna in the Jacuzzi, bald, no prosthesis
in her bathing suit, talking away to a friend, letting the jets bubble onto
her back, unconscious of a man who stares at her wordlessly ... Anna
working the sound system to coordinate records to the flight of lithe
little bodies as Lindsay and her friends twirl as Candy Canes to an
audience of toddlers in a nearby school. "We're takin' this show on the
road," says Anna, with a grin.
     Anna curled up with the phone, an eternal appendage now that she is
home, talking to a friend about how she hated to give up the store, then
moving out of her personal sorrows to talk about the shattering
international horror and grief over the assassination of Israel's Yitzhak
Rabin: "It was just horrible! I feel like we all did when Anwar Sadat got
shot at the time when peace seemed to be rolling along. After all the grief
and the fighting, the land will still be there. What are they fighting
over? One flood and it's over. It seems so pointless for them [the
extremists] to cling to it so." ... Anna yanking her suitcase with the ease
of a truck driver, no matter her pain, as she gets off the plane in New
York ... Anna collapsing on the bed with laughter at her sister Ro's house
in Rye Brook in We/chester until two A.m., then catching an early-morning
ride into Manhattan to meet her book editor for the first time.
     Michael's literary haunt on West Fifty-fifth Street is an annex for
editors, agents, and authors who ply their wares over power lunches. The
ma@itre do' greets everyone with an enthusiasm that manages to be genuine
and practiced at the same time (who knows where the next bestseller will
come from?). Anna takes the two steps down into the dining room. Her easy
style melds with the editor's and they are soon talking like old friends.
Late into lunch, as a hot flash comes on, Anna says, "Do you mind if I take
my cap off?" "Certainly not," says the editor. Anna peels off her green
cotton turban, and breathes easier as the heat exits from her glistening,
bared head. Everyone is so busy making deals that no one even glances at
Anna. Not so that night at the theater. A woman in the row in front of Anna
turns back often to stare disapprovingly, as if Anna had suddenly lit up a
cigar in a no-smoking area.
     Months later, at a breast cancer function, a famous TV commentator
looked at Anna, whose hair was beginning to come back in tufts and looked
like sprouts of grass peeking out during a spring thaw. "Isn't that a
little "in your face"?" questioned the woman, who lived by her looks in a
narcissistic profession. Why people feel such effrontery is hard to fathom.
Is the raw reminder of an obvious illness and treatment so fearful that
people disregard the person as being human? Anna says, "That's their
problem." And then there are such times as the day a leather-garbed
teenager in a 7-11 asked in awe, "Man, are you a skinhead?!" Anna gave him
a mock glare. "Yeah."
     One of Lindsay's most vivid memories is painting her mother's bald
head, just another insightful concept of Anna's to normalize the illness as
much as possible. Those days are captured in photos showing multicolored
swirls, stars, circles on the head of a grinning Anna. A colleague of Jan's
recalls: "Anna had this idea to paint the heads of children who lose their
hair from chemo so that it would not become such a social stigma. What a
woman!" says Tom Sobotka. "Anyone else flat on her back after chemo would
not have an idea in her head about anyone else. And she's also an
entrepreneur, thinking about making a buck --"How can I turn this terrible
thing into an advantage?"'"
     Anna is sensitive to her children's concerns. Like everything about
her illness, she approaches the question of her looks by talking to them.
"It's hard for them having to explain any mom at that age. It's very
     embarrassing--this parent with the big bald head." Anna's dynamic
personality always draws attention--"You're a nut," someone wrote in her
yearbook years ago. Her children are at an age when most are grateful
to have parents fade into the background, as any parent who has tried
to dance to hard rock around their children can attest. On the other hand,
sometimes "their friends say, "Your mom's really cool," and that's
embarrassing." Lindsay disagrees. "I like her that way. Mom's fun. I think
she's different. Other moms are more, you know, like parents."
     Says Anna, "I used to ask them, "Do you want me to wear the wig?"' and
at first, they said, "Maybe"--so I knew there were times. But now they want
me to just go bald." Ellery and Lindsay snuggle up to her one-breasted body
with ease. Love has nothing to do with how she looks. One day, Lindsay, who
had just turned ten on October 9, talks about her feelings regarding Anna's
not wearing wigs. "Well, like, I only care if it's at school, because then
I get into fights because kids make fun of her. I just tell 'em, "If your
mom had cancer, how would you feel?"' But if she does it in the grocery
store or around other people and my friends, then that's okay."
     Two rooms that seem off-limits to anyone over the age of eleven are
Lindsay's and Ellery's bedrooms--refuges at times from reminders of their
mother's illness. They are cluttered with toys and books and choked with
clothes on the floor. Anna, the child who was not allowed to sit on her
pristine white bedspread, now says as a mom, "I'm not going to have a place
where they have to worry about every little thing."
     One day, they are asked, If you had to write an essay on what you like
about your mom and dad, what would you say? Or what don't you like?
     "Oh, boy. Let's see," starts Ellery. Both know what they don't like.
"Making us do our homework. Nonstop." "Mom can be uptight about things, not
cleaning our rooms, and we have chores," says Lindsay. "If you look at some
of the kids in my school, they are very bossy and spoiled and mean. It's
actually rather sad, seeing these kids with nothing to do. Like my mom
says, "When kids are spoiled and get everything, when they want more,
there's nothing left to get.""
     Both Lindsay and Ellery, in separate conversations, say that the trait
they admire most in their mother is her humor. The children feel a sense of
priv-
     ilege in being brought up in what they feel is an unusual household.
"I think we're brought up a lot differently than any other kids because
we're very open with adults," says Ellery. "It's not just "Hi" and try
to kiss up to adults. How can I put this? We're communicative. Like their
friends in Richmond, we just have a good old time with them."
     One Sunday night just before Halloween, Anna and Jan entertain a
couple. They enter the blue-gray-shuttered brick bungalow through the
kitchen door. Only strangers use the front. Anna and Jan greet them with
warm smiles in their crowded but cozy center of activity, filled with the
smells of Jan's cooking. The dining room table usually holds a laptop
computer and an avalanche of papers, but tonight they have been replaced
with place settings. The living room is dominated by a bone-colored leather
sectional and a glass-topped coffee table often buried in homework. Since
Anna's strength has returned, paintings that sat on the floor waiting
rearranging have been hung. Phoebe, Jan's mother, had painted one, of the
North Carolina Outer Banks. "My favorite place in the whole world," says
Anna. By the unused front door is a hall rack filled with Anna's hats,
including one with a stuffed alligator on top. Another has a price tag
still on it. ("Just call me Minnie Pearl.")
     "This house needs work now, and I'm frustrated. There's a lot of stuff
I want to do--Lindsay's room is way too small, for example--but I don't
have the energy and it all costs a fortune." Anna's independence can be
exasperating; she turns away offers from family and friends to get help in
the house, feeling she must do it all, along with Jan. Part of this is her
intense desire to retain her normal style of living as long as possible.
     While Anna is in the kitchen cleaning up after dinner, the phone
rings. "That'll be Dad," she says, looking at the clock. "Hi there!" booms
Anna into the phone enthusiastically, making the routine weekly call seem
special. First they talk about Ro and her job. "She's really angry. Oh, I
don't know, some pup coming in and trying to take over everything. I tell
her, who needs it?" Anna listens for a minute or two, then says, "Now
for the bad news ... Yeah, some bad news," sounding as if she is going
to tell her father something as trivial as that the dogs peed on the
carpet. "Well, the MRI, they found that stuff is not being contained,
stuff's growing in the liver. [Anna avoids the word "cancer."]
     So now I'm going in for a CAT scan to check the brain and other places
to see if it's spread." Her father fumbles with something to say, then asks
if they will still visit in January. "You bet. No way in hell I'm going
to miss it. ... The good news is that I'm on a drug holiday. ... So how's
everything? Playing golf? Seeing your woman?" says Anna, encouraging him
about a female companion.
     As she hangs up the phone, Lindsay comes in with glitter glue drawings
and cutouts. Anna gives her a hug. "Those are great!" As she turns back
to the dishes, her eyes fill with tears. She leans her hands on the sink
ledge. "The worst thing is the thought of leaving the kids." Her voice gets
high as she tries to talk over the tears streaming down an anguished face.
"Jan can take care of himself, I just know that, but I want to be there
for the kids--and I just can't stand that. That little girl needs me." As
Lindsay returns with another glitter glue offering, she sees her mother
wiping tears from her face. After she leaves, Anna says, "That's okay. She
knows I've been talking about my mother to Dad and that always makes me
cry." Anna feels some release talking about the emotional pain she feels.
"I want to see Ellery graduate. I want to see Lindsay's prom dress." The
tears cascade again. "I don't think that's going to happen."
     Dealing with her children is by far the most difficult emotional
problem now. "I play it by ear. My concept is that whatever happens
to children happens in such enlarged proportions at these ages--and
therefore they're dealing with enough at this point. They've got worry.
Concern. Fears. But to point-blank tell them that something is or isn't
going to happen when even the doctors can't really tell us, I don't see a
point to that." One day, Lindsay asked her mother if she thought she was
going to die. Anna answered truthfully, "I'm not planning on it."
     Yet Anna is seeing enough changes to consider getting some help
for the children. "When we go to parents' night at school and I pick up one
of their journals, I see that I'm the topic of conversation, "Mom has
cancer," and so on. So I know it's on their minds." There was further
evidence when Anna looked at Lindsay's work for a drug abuse program and
noted that "on at least three of these drugs, Lindsay's first answer was
that it causes cancer. It wasn't in the book, but there it was on her
paper.
     "Lindsay's afraid she's going to get it and we talked about proactive
     things she can do to make sure she doesn't. I said to her, "I don't
know that you will necessarily. If breast cancer does skip generations,
well, it skipped my mother. She had a whole different kind of cancer. And
look at Aunt Ro--she survived it." I explained what it meant about skipping
generations and said, "If in fact it does, you have to watch your daughter
like a hawk if you have a daughter, make sure she does certain things." And
then I talked about the advantage of time and medical science and told her
about how they've cured polio, as an example. "You take a vaccine now.
Cancer is another one of these diseases that's being fought, and eventually
they're going to come up with a cure." I absolutely believe that. It's just
a matter of time. So I told her she's got time on her side and she
shouldn't assume anything. But when she is older, she should go to the
doctor and make sure she's okay." Lindsay listened but said nothing in
reply.
     "I think both of them are a little clingy. Not regressive at all. They
are very mature for their ages. With Ellery, it's hysterical. He wants
to be part of every conversation we have. He's a little old man sometimes."
Ellery says the way his mom handles her cancer makes it easier for him.
"The demonstration of her being open about her cancer is her giving
nicknames for each drug. Like Mighty Mouse for Mitomycin. Her cartoon
cocktails, as she calls them."
     Lindsay pulls back in denial and avoidance. "She's still a little
girl, but she has matured so much physically--God, she's five feet
three-quarter inches now--that sometimes I start talking about something
and I can see I've totally lost her." Barely ten years old, Lindsay keenly
feels this burden. "I'm the tallest person in my class. Everybody thinks I
am twelve or thirteen. Adults always expect me to do things that I'm not
capable of yet."
     Sometimes Anna can't tell if Lindsay's overreaction to incidences is
simply par for her volatile age or an indication of deeper concerns about
her mother. Anna wisely assumes it's mostly her age. One day, Anna utters
without thinking when she sees Lindsay's class pictures, "Ohhhh, honey! You
covered your face with your hair. I wish you had put it back like I said."
Lindsay bursts into tears and slams out of the kitchen into the living
room. A friend who came home from school to do homework with Lindsay sits
at the dining room table. Anna immediately says to Lindsay, "Oh, honey, I
didn't mean to hurt your feelings ..." but Lind-
     say won't listen. She goes to her room and shuts the door. Anna feels
terrible, knowing that she has committed the sin of saying something
critical in front of a friend of her daughter's, who is now making a quick
exit for home.
     That night, Anna goes into Lindsay's room and talks quietly, then
gently asks, "What's bothering you?" Lindsay bursts into tears and says she
hated the pictures too. Anna's frankness made her all the more aware of how
much she despised the pictures; her mother had rubbed her the wrong way
with honesty. "Well, sweetie, if you don't like the pictures, we'll get
them done again," says Anna. Lindsay brightens and says, "Cool." Anna says,
"Promise me you will smile and pull your hair off your face." The bald
mother is hugging her daughter with hair so long she can sit on it. Lindsay
feels even closer as Anna confides to her, "I had hair that long too, and
there were days when I didn't feel so good about myself. I used to throw
that hair in front of my face."
     Another day, Lindsay comes home from ballet, puts her head on her
mom's shoulder, and sobs as if her world had ended. Anna instantly knew the
reason. The ballet director and close friend, Jane Bittner, will not let
Lindsay dance on pointe. Anna calms her down, explaining that toe shoes are
not good while her feet are still growing and that next year she will dance
on pointe. Anna makes a puppy dog face and pants and Lindsay starts
laughing in spite of herself.
     But Anna is human and there are days when her positiveness fades. One
December day, Anna simply gives in to her "feel-sorry-for-myself day." It
is just after she had chemo and the chemical changes in her body produce a
natural depression. This, combined with her thoughts, brings Anna down.
Although she feels it is self-indulgent, she also recognizes the need
to release these emotions. Anna says to herself, "Well, if you're going
to cry, then, God dammit, turn on some music that will really make you
cry." Today there would be no favorites played when she feels upbeat, no
stirring drums and rhythms from the African group Ladysmith Black Mambazo,
no nostalgia time with the Rolling Stones or the Beatles, no sweeping
Chopin. Anna turns on Enya, the popular Irish singer who blends her
haunting voice with ancient instruments.
     Anna curls up on the sofa and stares out the window and listens and
     weeps. Her thoughts turn to her mother. How she was not seeing this
day. And Anna conjures up everything she would never see if she dies--a
beautiful day, Jan, the kids--the whole world. How she wouldn't be
experiencing anything. She thinks, "You can't stop the big steamroller and
everything will just keep right on going after I'm gone."
     Tears flood her face as she sees the impotence in death, the total
loss of control. Her mother had written an addendum to her will while she
was mad at her sons, which was, in Anna's words, "pretty nasty." The family
decided that she really didn't mean it and, after her death, omitted the
addendum. Anna starts thinking, "Obviously I won't be there, so whatever
decisions I make can be rescinded." She wasn't thinking about her will, in
which everything goes to Jan and then to the children if he should die. She
weeps as she thinks, "Gee, what are my opinions going to mean? On
anything!" Then she feels guilty. "Hey, look what I did to my own mother! I
blew off her opinion, even though I feel that we could have sat down and
talked to her about it and said, "You're being too severe." But we didn't
try."
     Anna turns, as always, to Lindsay and Ellery, who figure strongly in
her blue day. "What will this experience of watching me and then having me
gone, if that's what happens, do to how they grow up?" Fear that she will
not be remembered grips Anna as eerie music wafts through the room. Later
she explains, "When I find out that someone had a parent that died young
and when they were young, I ask, "Tell me about your mom." "Well, she died,
you know, and I don't remember that much." So many people that I know just
don't have any strong recollections even of parents who were very active
with them. Look at myself. I kind of blissfully went along through
childhood and I really have to think hard about what I remember; it's
amazing what it takes to jog my memory. So I really worry about that with
my kids. "Oh, my God, I'm not going to be here. They're not going
to remember me." And then I like my area of control in my own right too,
and I get sad thinking that I will have no say in how they grow up."
     As she races through these thoughts on her blue day, the tears never
stop. After she can cry no more and her eyes are swollen, Anna experiences
a deep anger at her fate. On the phone, she screams at her sister, "God
dammit, why were you the lucky one? You don't have kids. Why
     am I not the lucky one?" Anna has formed her own reasons. "I've always
lived a charmed life and I've always known that sooner or later something
bad was going to have to happen to me." Not that Anna lives in puritanical
fear, waiting for that shoe to drop. "I feel that I am a simple person,
philosophically, and am not as complicated as those who have had extensive
problems and dissatisfactions. I'm happy with what I have, and if I'm not,
I change it. I've been the little engine that could and I really stupidly
believe in that philosophy because I've done it."
     Now she is fighting something that doesn't pay the least bit of
attention to her drives, desires, or dreams. "I'm waiting more now for the
shoe to drop than I ever have in my life."
     In a matter of hours, Anna is back to her more typical operating
spirit. "You really cannot dwell on it or you'll go crazy."
     Asked what advice she has for others to keep from obsessing about
their plight, Anna offers her solution. "Think about other people. Do
things for other people. Involve yourself with other people. I have friends
who say to me, "I can't believe it, here you are in your situation, and
I've just spent two hours complaining about some trivial matter and you're
listening and giving me support and advice."" Little do they know that they
are giving Anna a gift by treating her as one of them.
     "If you're involved with people, you're not thinking about yourself
all the time, you're thinking about them. It's very rewarding. Find things
to do that make you feel good," says Anna. "You can still have a very
fulfilling life and a very good time."
     And if you're like Anna, even on a blue day, you hatch a plot to make
life better. The next step was one of the most rewarding that she would
ever take.
     CHAPTER SEVEN
     The Clay Wall
     Thwack! A wad of clay hits the wall with a satisfactory slap that
echoes in the room. More clay wads find their mark. Thwack! Thwack! Giggles
follow from the adults who are thrilled by the sheer childish pleasure of
it all. The instructor tells them to think of something or someone that is
causing them anger. Thwack! Thwack! A wonderful surge, starting deep in the
stomach, flows through the body as pain and anger is released as each smack
of clay shakes the wall. Grown-ups have taken over the playroom as they
study the complexities of how to help grieving children.
     Ten adults are surrounded by the childhood magic that fills the world
of children's counselor Dottie Ward-Wimmer at the St. Francis Bereavement
Center in Washington, D.c. Anna has called to make an appointment with
Ward-Wimmer, who will come that week to the Johannessens' home for an
initial conference.
     But today, Ward-Wimmer is hard at work training prospective volunteers
how to work with children. Which is why they are pummeling the clay wall.
Originally, Ward-Wimmer had children tackle their immense anger by pounding
the clay on a board. Then one day a boy with tears streaming down his face
picked up a handful of clay and threw it at the wall. That gave the center
an idea. Plexiglas was affixed to the entire wall and children found great
relief, as well as fun, in throwing at the wall instead.
     Some years ago, an angry teenage client had refused to even talk
to Ward-Wimmer for weeks. His first verbal contact was to command that
Ward-Wimmer stand in front of the wall. Then he aimed handfuls of
     clay all around her body. She tried not to flinch as each new round of
clay whizzed close to her with terrifying velocity. When the boy stopped,
Ward-Wimmer knew they could finally Start therapy. "I had to show that I
could trust him before he could possibly trust me with his huge awful
feelings." His father had shot himself to death in front of the child.
     Ward-Wimmer has a remarkable ability to get close to children of all
ages. An aura of the long ago '60's flower child remains inside this plump,
comforting earth mother with curly, wild blond hair. "I do this work
because I love it," she says. "I help make sense out of what is senseless.
I give this [knowledge] to others and they, in turn, pass it on. It is
easier for me to sit with children who are in pain than it is to walk away
and worry about them. I know this is going to take time for them. Their
life is a mess. But at least we have done for them everything that could
get done that will help them get through it."
     What Ward-Wimmer demonstrates and says about listening to children,
especially with the heart, is invaluable for any parent. Children face
losses every day of their young lives and they face them without the
maturity to understand their feelings. A beloved kindergarten teacher
disappears forever when one goes on to a scary first grade; Daddy has
to move on account of business and guess who has to go too, and has to give
away the dog; Grandma gets sick or a favorite gerbil dies; Mommy and Daddy
aren't going to live together anymore and they are going to share me,
whatever that means; adolescence descends, along with acne, heartbreak, a
voice one can't depend on--and a loss of what was and a fear of what is
going to be. Friends move. New schools lurk. All of the grieving of saying
good-bye is a part of their lives, and so is death--the dog who gets run
over, the friend who drowns or, more so today, is violently killed in a car
wreck, the father who drops dead of a heart attack, the mother who lingers
through months of cancer. This happens daily--and it is a terrible load.
And yet there are those who persist in thinking that children do not
grieve, that their attention span will not hold that emotion.
     Unfortunately for parents who could learn so much from her,
Ward-Wimmer's classes are for professionals who have worked with children
but who feel that they need to learn more. "I work with people who have
AIDS, including children, and I'm here to learn about anger and grief--how
it can be expressed," says one. A male D.c. superior court family
     counselor says, "I see children taken from their fathers and I want
to learn more about how to handle the grief that I see." A young woman
comes in late, nearly in shock. "I work at a special education treatment
facility with children, and most have been involved in a violent incident."
Pause. "I just found out a few minutes ago on the news that a boy I worked
with got arrested. [The media would cover in major detail the story of this
boy, a gang leader, who had allegedly set up someone to kill a member of
another gang.] I'm probably in grief myself right now," she says.
     A social worker at the Hospital for Sick Children explains, "I came
here to be able to help kids I work withand also to help their siblings.
Children die. A lot of times, their healthy siblings are neglected
terribly." And a Fairfax County school counselor, who observes healthy,
average children, wants to learn more about how to work with children
trying to cope with the trauma of parents, siblings, or grandparents dying.
"Also, being removed from the home, if the parent is abusive or cannot
afford to keep them, is a different kind of grief." A nurse practitioner
for a pediatric oncologist says, "I want to learn how to listen and try not
to intervene as much. That's kind of the opposite from my feelings." An
artist and art therapist who works with adolescents says, "I am interested
in how grief touches adolescents and what I can do to help in a world that
does not acknowledge grief, even when it's all around us."
     Ward-Wimmer nods. "Yes, it is all around us. All of us have
experienced what seems like the mother of all griefs. Grief is normal.
Grief is part of every day. It is universal, but what I must stress," says
Ward-Wimmer, "is that grief is healing and necessary to healing!" She
pauses and looks around the room, making sure the point is absorbed. "Grief
is natural, normal, very very functional. NOTHING WRONG WITH IT," she
shouts. "The problem is, we all want to make it "better."" She emphasizes
her point, hitting one hand on the other and speaking in a rhythm. "It's
not about fixing grief--because we can't. We have to give it room." It
applies as much, if not more so, to children. "We're the support system so
their healing can occur."
     The first thing to remember is that children don't talk about
emotions. For adolescents, it is too scary to speak of them. For younger
children, there is no concept of what their feelings even mean. The
attention
     span of a four-year-old to understand the sad feeling when someone
close dies may be fleeting, but that child will revisit grief in more depth
and with more understanding at different ages during his or her life. And
as adults, we relive and often reshape those childhood losses with deep
emotions, triggered by new losses and current bereavement. If not handled
well in childhood, those emotions can resound with incredible pain.
     Ward-Wimmer is adamant about one point. A child needs to know the
truth. "Because children still have this wonderful magical thing, which is
part of childhood, they can misconstrue things if they are not given
information or are given lies or evasions instead. So children can often
look like they don't know what's going on and yet they are aware and
they're frequently blaming themselves because nobody's talking to them, so
they figure this means that they did something wrong. Children need to have
information given to them in a way that is clear, correct, and age
appropriate.
     "Some say that, from a psychological perspective, children can't
grieve the way we do. Well, if you're old enough to have feelings, you're
old enough to respond to change or loss. In order to work those changes
through, you have to know what's going on. Otherwise you're just
shadowboxing. What you need to do with little children--as with adults--is
to give clear information. If I said to you as adults that so-and-so got
sick, you'd want to know, "What do you mean sick? How sick? What kind of
sickness?"' So that you can process and make sense of it.
     "Children need that too. They don't need things like [she imitates a
kind but vague tone] "Oh, don't worry about it, it's just a sickness, now
you just go out and play." They don't need, when someone has died, "Well,
God loved Mommy so much and He needed another angel, so He took Mommy
to heaven." Sweet things like that only confuse children. The child would
just get mad at God. Or desperately try to find a way to join Mommy. If you
just tell a child, "Well, Grandma went away," a child would think that she
did something bad to make Grandma mad, so she went away and will never come
back. They can't possibly begin to process what's going on.
     "It is important to help take away the fear of the unknown. If you're
making the assumption that they don't or shouldn't know, then you're making
the assumption that they don't need to be comforted, and that's
     wrong. Oh, they get noticed, people hugging them and saying, "Oh, poor
baby"; they get a toy and then are told to go and play. The child likes the
attention, but at night, he or she is still wondering, "What's going on?"'
"What's going to happen to me?"' "Why is everybody crying?"' "What did I
do?"' The child has been distracted but hasn't been comforted. Certainly
sometimes that's appropriate, but you need to know that the child deserves
to be comforted as well.
     "When the whole family is grieving, it's hard for the parent to be
really emotionally available," continues Ward-Wimmer. "So it's wonderful
to have friends or more distant relatives who aren't as intensely grieving.
They have some free energy to be able to give to the kids, because kids
will sometimes try to be quiet and not upset Mommy or Daddy, who's already
an emotional basket case. Those extra people are really useful. The
whole-village concept.
     "But we as grown-ups have to ask ourselves a tough question. When we
reach out to comfort a child or another person, are we reaching out with a
willingness to hear and to witness their pain? Or are we reaching out
to say, "Don't cry, because I can't take feeling the pain"? Are we really
shutting them down? This is a habit we can get into. If a child is asking
questions or is crying, just take a breath. Just take a breath. Watch the
child cry. Allow that child to cry. That says to the child, "You have a
right to cry. This is sad. This is really tough stuff." Give them that
moment. Then you reach out to the child and say, "May I hug you?"'"
     Sometimes people don't want to be hugged, Ward-Wimmer is told. She
laughs. "I've learned that by making lots of mistakes, by hugging people
who don't want to be hugged, because it may not be the right time. It might
be better to say out loud or to think, "I'm just going to sit here with
you, because this is sad and people need to cry."" She expands the topic
to include adults. "Some people feel that crying makes them more
vulnerable. They are conditioned to think they might feel worse--"I'll look
like an English muffin, all red in the face, and it's not going to do any
good." People have a right--children and adults--to have their feelings in
whatever way feels good for them!" she emphasizes. "It's not our job as
helpers, whether it be therapists, neighbors, friends, family, ministers,
to make somebody cry. It is not our job to make somebody laugh and cheer
up. If we honestly wish to support somebody in grief, it
     is our job to be willing to hear what's happening inside of them and
to be able to respect it and to honor them and to ask them what they need.
     "Certainly we need to be able to reassure children and adults, but we
must do it carefully. It's nice to be able to reassure them that this
feeling will not last forever. You can allow somebody to be in their
sadness and then at some point in time offer the hope that "thank goodness
these bad feelings don't last forever." There is a big difference between
that and, as soon as you see the child or adult, running over and patting a
shoulder and saying, "Oh, you'll get over it. This will take time, but
you've got to get back into life and you'll get over it.""
     Meaningless, often offensive, platitudes are ways to stop conversation
with grieving adults and children --"You had her a long time," "He lived a
full life," "God has his reasons," "You're young, you'll get married
again," "I know what you're going through." Ward-Wimmer says, "A lot of
what we say to other people we're saying because we don't want to sit and
feel that pain. So we say something "nice." We give them an emotional
cookie to make them feel better. And you can't make them feel better. They
need to feel grief so that they can feel better."
     Ward-Wimmer walks over on her knees to one adult, pretending to be a
four-year-old, puts a finger in her mouth, and lisps, "What is dead?" The
startled adult tries to answer. "Um, ah, dead is ah, um, well, not living."
Ward-Wimmer doesn't let her off the hook. "What is not living?" As the
woman squirms, Ward-Wimmer says, "It's important to be literal." She
demonstrates an answer to the child. "When things are dead, they don't
breathe, they don't drink, they don't eat, they don't smile, they don't
laugh, they don't talk. Their body is dead. It is not alive anymore. Dead
means not alive." Do they absorb that? she is asked. "They absorb it in a
small way. It's important to know that they are not going to grasp it
with the same permanence as adults or older children. But you're giving
them a beginning, something to think about. It's not just important that
you are telling them what dead is. More important, you are conveying, "I
respect you. You deserve to have your questions answered. You are not going
to be left alone in this. You're part of this family and this process."
     "It is wrong to make blanket assumptions, such as the death of a
     grandparent is the biggest loss, or the death of the mother or father
is the biggest loss. Each relationship with a child is unique. We can't
know what the impact of a loss is until we find out from the child what
that relationship meant." How do you know you are getting through? she is
asked. "Sometimes you don't know. Sometimes you have to kind of go on
faith. Sometimes what you need to look at is "What are the behaviors that
are happening outside of your conversation?"' Is this a child who is
brought to you because he's not sleeping well? Some kind of behavior is
going on that is different. And even though you haven't addressed that
correctly, if the behavior is diminishing, then you know if the inner
adjustment, the healing process, is taking place.
     "A major mistake," says Ward-Wimmer, "is that we expect children
to talk to us in the same way we talk to each other. It's like expecting an
infant to get up and walk to us. Developmentally they're just learning what
these feelings are, just learning what names go with these feelings. Their
egos are not yet fully developed. It takes a strong ego to be able to hold
on to some of these feelings and then be able to own them and share them.
     "How many times do you not want to talk about how you feel? For kids,
it's the same. Especially prepubescent kids. They're in a place--and all of
us have been there--where "I know something but I don't want to know it.""
Anna's children are of that age group. "For a kid this age to be willing
to talk about how they feel, first they have to trust you implicitly,
second they're coming into an age where peers are the most important thing
in their world. These things are private. "Talking about Mom being sick
makes Mom really be sick. I can no longer on any level pretend that my mom
is fine and she's at home, just taking a little chemotherapy, but things
are really better. I can't, if I'm talking about how sick she is. That
opens the door for the fear sitting in my gut that says, My God, Mom could
die, and then I can feel it and I don't want to. So I don't want to talk
about it."
     "Now there are lots of kids who are very articulate and very
verbal--and they can be real good at knowing how to say what you want them
to say. But to articulate what they're really feeling is extremely
difficult. That's why we use games, artwork. "I can't find the words
sometimes to say how angry or how scared I am, but give me a choice of
colors and I can tell you what
     color I feel."" Unlike some child therapists, Ward-Wimmer does not set
as much store on the colors children chose (red for anger, yellow for sunny
thoughts, for example) as much as the manner in which they are used. "If a
child picks up a yellow crayon and balls it up in his little hand and rips
that paper with that crayon, that tells me more than looking at the color."
     Now the adults in her class are laughing self-consciously as they
sample her games and artwork. They draw happy scenes, as instructed, on
blank white puzzle pasteboard. When they finish, Ward-Wimmer tells them
to pull apart their puzzles of rainbows, sunshine, lakes, forests, families
standing together. There are some groans as their artwork lies in pieces.
Then they are told to put them back again. There are bumps and cracks where
the puzzle pieces have been fitted back together. "A child in grief learns
with the puzzle that nothing will ever go back as absolutely as it was--but
you can put your life together. It will be different. It can be solid, but
it will have some edges and marks it didn't have before."
     Another favorite tool is the picture box filled with sand. All sorts
of toy objects are available to place in the box--people, animals, birds,
trees, water, cannons, houses, graves. "Sometimes kids will make a general
picture. If they've lost a mother they may put a family in--and the mother
figure is left out. Sometimes you can be very specific [again more
indirectly--not "How do you feel about your daddy having cancer?"']. You
can ask, "Do you think you could make a scene in the sand that would help
me understand how you feel about what it's like to have a dad who has
cancer?"' It's amazing what they will do. They will put cannons in the box.
They want to shoot that cancer away. They will put the whole family in a
corner and cover them up with rocks, to protect them, so that nothing will
happen to the family, including the sick father, so the whole family can
stay together. That's their way of pretending that nothing's wrong. That
the cancer can't get them; there is no cancer. I have some little graves
and they will put graves in there--that's what it's like to worry about a
dad with cancer. They might have a baseball player at one end and a grave
in the other--"Sometimes we can play Little League and sometimes he might
as well be dead he's that sick.""
     Ward-Wimmer warns that there are no absolutes with children's grief,
any more than there are with adults. "I've worked with kids who literally
     every week all they do is go to the sand trays. Some kids use more
clay. Some love to dress up and play out the funeral. They have funerals
for each other because they're afraid they'll get shot too."
     And sometimes Ward-Wimmer uncovers horrible secrets. "One kid was
brought in to grieve. Couldn't cry. Never cared. Had terrible temper
tantrums. As I worked with him, I realized he had been sexually abused. He
asked me for a horsey ride and then he started humping me. Kids don't hump
grown-ups. That's behavior he learned." Slowly the awareness and healing
process began. "He used the puppets a lot, in terms of making sense out of
this. This child would never converse about this. It was all done in the
metaphor--puppets to puppets. He used the shark, the alligator. And he used
a soft, nonthreatening puppet, a bunny. These are little kids. They
emotionally can't process it yet, can't own it. So they have to do it "out
there" in the world of animals, not people, because it's safer. Then, bit
by bit, they take it into their own lives and start healing. He'd take a
doll and pull its head off with the shark puppet. I'd sew the head back on
and the following week the shark would pull its head off again.
     "I had to get involved in that play with him and eventually begin
to find some protection for the doll. And then he would say, as the shark,
"Oh, you can really trust me," and I would say, as the doll, "Okay, I think
I can trust you," and the shark would come again and bite its head off.
Then I would say--not in the doll's voice but in my adult voice--"I hate it
when I think I can trust somebody and they hurt me. It's a horrible
feeling. I hate it." What I was doing was voicing for him some of the
emotions he was feeling inside but was not able to put words to.
     "It turned out that the father who died was the perpetrator. And
that's why he couldn't grieve. He was so glad that this man was dead and
yet he did miss "a dad" because everybody wants a dad. But he didn't feel
guilty that he wasn't grieving for him. He felt guilty for all the reasons
abused children feel guilty: that somehow he deserved it, that it was his
fault. It was a very complicated case. He was grieving because what he
wanted was a real dad who didn't hurt him. And he needed to hear someone
saying to the soft doll whose head was being pulled off, "It's never your
fault. Never the doll's fault. Grown-ups know better, but sometimes
grown-ups make bad choices and they do the wrong thing."
     "The issue with abuse is not just what happens to the genitals or with
     hitting the body, it's the misuse of power. What kids have to grapple
with is that misuse of power, that trust which was destroyed and that
god-awful feeling of helplessness and waiting for someone to protect them.
They don't believe that somebody is going to protect them. And so we had
to play it out."
     How did he turn out? "Great. It took the better part of three years.
He was eight when he started and eleven when he left." She hasn't heard
from him in a few years and Ward-Wimmer feels this is as it should be.
"When it's done, it's done. But kids do regrieve. Sometimes you'll get a
call six months, two years, later. "Can I bring him back here?"' He's
having nightmares or he's having trouble in school or it's just that he
wants to come. And I'll say, "Fine." They're rethinking it, they're
reprocessing it. When they come back, it's not usually for a long period of
time."
     Ward-Wimmer regrets that there is not enough space or staff to handle
more children, including those trying to cope with anticipatory grief. "If
we could work with children who are dealing with cancer, we could help a
lot more, but our specific group is for children who are dealing with
somebody who has AIDS." (for those without insurance or in need, the center
provides counseling on a sliding scale and pro-bono basis for both adults
and children.)
     The anxieties and fears and sorrows of children who are coping
with the possibility of death, such as Lindsay and Ellery, are different
from those who have lost someone. "They're still holding on. They're still
hoping that it won't happen. You give it room. Once they're allowed to say
that they're scared, once they're allowed to say that word "die"-- "I'm
afraid he is going to die"--and they discover that their tongues didn't
fall out and Mom and Dad did not drop dead just because they said they're
afraid, then they can put it in a more realistic context. Again, we have
to pull it out from that magical thinking place which says, "If I am really
good, and if I don't make any stress in Daddy's life, he's not going
to have another heart attack."
     "This carries over to adults. How many people do you know who will not
write a will because they're afraid that as soon as they do, they'll die?
Better to avoid, but, of course, it's really not. With children, we have
to help them try to discover that they are not to blame and not as powerful
[to cause death or illness] as they think they are.
     "Some of it is having to work with them, to figure how they are going
to live with it. "I can't make all of your anxieties go away. Your mom is
being treated for a real severe kind of cancer. That's scary. But how are
we going to balance it? Do we need to be afraid all of the time? Do we need
to be afraid some of the time?"' Sometimes I just say it, we talk about the
truth. You don't manipulate them. You empower them. If they know what
you're thinking and why you're doing some of the things you do, you're
giving them the tools to do it on their own. What good is it for a kid
to come in, talk to you or play with you, go home, and not have a clue
what's happened? All you've done is make them dependent on you. You have
to teach them as they go.
     "Part of therapy is to help children learn that it's okay to talk
to Mom and Dad, to tell them what they're thinking about death and dying.
They don't deal with that because they don't want to upset their parents.
All they can think is "I just want my mom to get well." When they play
with the sand tray, part of the action is to separate themselves out of the
picture, separate from this "other family" that has all these problems."
With work, trust, and time, Ward-Wimmer helps them integrate their
feelings.
     "Initially I usually see them once a month just to check in. The kid
might say, "Hey, I feel fine," and off she goes and you might not see her
until the parent is really sick and about to die. But there is wonderful
groundwork because the child doesn't have to go to a stranger at this so
vulnerable time. Sometimes they never have to use it--because knowing that
the therapist is there gives them the courage to try."
     One of the hardest situations is to know when a child is acting out or
failing in school, for example, just because of being a child, who may be
bullied at the playground or experiencing hormonal changes, rather than
suffering through life-threatening illnesses or deaths in the home. "We try
to tease out, with the kids andwiththe family, what part of this is due
to the illness, and we respond to that when we can, and what part of it is,
well, "He's a kid. These things kids do." Sometimes you can't separate
them. So you just bite the bullet. If a kid's grades are dropping,
sometimes you just have to do things that you would normally do anyway,
which is to say, for example, "Hey, we have to institute a study period in
this house." Sometimes understanding the psychodynamics isn't the most
important thing. You can analyze it to death, but mean-
     while the grades are plummeting. "So we're going to cut out the
telephone time, cut out TV, and at the same time that we're doing these
practical, tutoring kind of things, we're going to make sure you have
somebody to talk to, be it the school counselor, whatever.""
     Ward-Wimmer is asked what advice she can give parents to help them
better understand and to help their children with everyday losses.
     "Pets are a big thing," says Ward-Wimmer. "Often we tend to dismiss
pet losses. It's a perfect place for kids to learn about mourning and
funerals and to have a funeral, a ritual to allow the child to say
good-bye. You're teaching them that their feelings are worthwhile, that
there are ways that they can say good-bye, and you're also teaching them
that they will get over it someday. They have gone through this little
practice ritual of crying for their goldfish. They get to ask questions
about what happens when you put something into the ground.
     "If Mommy says, "Are you feeling bad about leaving school?"' and the
kid says, "I don't know, mumble mumble," how does one say this in a
comforting way that leaves it open-ended for a kid to accept or maybe not?
We don't have to pathologize everything and think the kid is going to be
traumatized every June--because he's not. But if there has been a favorite
teacher, you can put it this way [again, Ward-Wimmer does not confront
with a direct response, but asks for a child's permission to suggest],
"This has been a very special year, you really like Miss Jones. You might
find you will miss her a lot at the end of the year. Is there anything
special we can do to say good-bye?"' You don't have to buy something. Far
better to spend the time on the floor making something. If the child is not
writing yet, he can dictate it to you. "Let's write her a special letter
and tell her what she meant to you." This is saying, "You have a sad
feeling, let's acknowledge it. Close it and move on."
     "A child comes home and tells you the old lady down the street died.
You've seen her twice. No big deal to you. Frequently we just brush it off.
But if the child is telling you the lady died, it's clearly an issue. You
can sit down and say, "Tell me about her. I didn't realize you knew her
that well," and then your child can acknowledge that she talked to her on
the way to or from school. "Sounds like you're going to miss her a lot. We
might wind up going to the funeral or driving past her house and
     waving good-bye if you'd like." Or it could be simpler, say, the first
time he or she has known anybody who has died, so they are really asking
questions about what this dead thing is. You could start by saying, "Oh,
what happened?"' "I don't know, I just heard she died." "Okay, well, if you
have any questions or want to talk about it, I'll sure listen." Or the
child might say, "Are you going to die?"' "You sound scared; well, that's
an important thing to ask. And it gives me great pleasure to tell you that
Mommy is very healthy.""
     A true story is told about a famous artist whose son came home from
kindergarten with drawings that used only brown, black, and gray crayons.
As this continued, his parents became worried enough to wonder if he should
see a psychiatrist. Surely such somber work indicated something was wrong.
"Don't you like bright colors--like blue and green and red and purple?" the
artist father asked. "Sure," said the child, "but Bobby keeps taking all my
good colors."
     Ward-Wimmer laughs. "That's a perfect example of why we can't make
assumptions. We are not infallible." In fact, experts have to weed out
questionable would-be counselors and therapists who are drawn to this work
because of their own needs. "We're in this business because we all have our
stories and we use our stories a lot when we teach. But when doing therapy,
it's very important that we have some very clear supervision so it's not
our stuff that is being worked on," says Ward-Wimmer, who had her own
childhood demons. "If something is triggered in me, then I have to go talk
to somebody and process that through."
     And sometimes, says Ward-Wimmer, you have to admit a mistake, have
to say "I'm sorry" to a child. Early in her career, Ward-Wimmer worked
with a seven-year-old who was dying. He had reached a placid acceptance and
looked forward to going to heaven. One day, he asked Ward-Wimmer how one
goes about getting to heaven. She fancifully answered that the boy's mother
and she would hold on to the corners of his sheet and toss him way up in
the air and he would land smack on a cloud in heaven. A few days later, the
mother called and asked, "What have you said to my son? He's hysterical and
won't sleep. He keeps saying, "What if they don't throw me far enough and I
land on a telephone pole and never get to heaven!?"'" A mortified
Ward-Wimmer told her the story. The next morning, she was by the boy's
side. "You know that story
     about going to heaven?" she said. "I lied. I lied because I really
don't know how someone gets to heaven. I'm so sorry."
     The boy sighed in relief and told her, "That's okay. I think I have it
figured out. Jesus comes down and takes me by the hand and leads me there."
Ward-Wimmer nodded, a lump in her throat, and this time she gave no
opinions. "That's a wonderful way to think about it."
     Redefining the family pattern during a life-threatening illness or
after death is often another grueling experience, especially if family
members are not forewarned. For example, adult children who feel torn
because they cannot leave their own responsibilities to care for a parent
may feel deep guilt, while an adult sibling who has taken up the burden may
feel deep resentment and anger at the rest. In some instances, the terrible
anger that comes with the death of a loved one may be dissipated
irrationally. The surviving parent, for example, can become the scapegoat
as grieving children, including adults, elevate the dead father or mother
to sainthood. This is particularly true if the parents are divorced or have
cobbled together a family that includes children from previous marriages.
     An adult male, made aware of his own mortality by his father's death,
may leap headlong into a romance or even divorce his wife to obtain a new,
"younger" life. Others who have held off on becoming fathers can suddenly
see the virtue of preserving their own mortality by having children of
their own. Unmarried adult children of both sexes may shy away from
intimacy during their long period of mourning.
     And the entire family pattern is changed, sometimes shattered, when a
widowed mother or father or the surviving in-law comes to live with their
adult children, particularly if the adult child and spouse have not come
to grips with their own grieving over the loss of the parent.
     For adolescents, such as Ellery and Lindsay, there are special
pitfalls. A developmental challenge--turmoil in its own right--is balancing
one's desire for independence with the security of childhood. A prolonged
illness and death of a parent greatly interfere with how preteens and
teenagers face this challenge. They desperately want life to be as it was.
     "Not thinking about it helps teenagers quell their fears about living
in the future without their parent," writes Betty Davies, a nurse
specializing in death, dying, and bereavement. *1 Shielding themselves from
     such horror becomes a major goal. "A seriously ill parent disrupts the
normal process of breaking away from the family, shatters their security
and draws them back into the family." They often hide it from parents, but
they resent the changes and long for the normalcy of their other friends.
They may cling out of their own needs, but, on the other hand, since they
lack the ability to see into the future and the inevitability of death,
"they do not feel the need to make the most of the time they have with
their parent." *2
     Intuitively understanding, Jan and Anna welcome and do not discourage
this aspect. Anna never makes her children feel they have to stay with her,
never complains about her illness in order to make them do something, such
as attacking household chores, when they balk. She is relieved when they
express themselves in such normal lazy teenage ways and treats it on that
level, getting after her children as any mother would. Sowing the seed for
such guilt trips is abhorrent to both Jan and Anna. Her concern now is for
finding professional help to ease the way for her children.
     Guidelines to grieving and mourning are always useful, just as
preconceptions can often mean misconceptions and absolutes spell disaster.
As Ward-Wimmer and other experts in the field of death and dying
continually emphasize, no two people, children or adults, grieve the same;
no two people carry the same baggage or pleasant memories into the grieving
process.
     At this point, a saying by Carl Jung, hung on the wall in one of the
rooms at St. Francis, seems applicable: "Learn your theories as best as you
can, but put them aside when you touch the miracle of the human soul."
     CHAPTER EIGHT
     Paving the Way
     Brilliant winter sun pouring in through the living room window belies
the whipping coldness of outdoors. A red-faced Dottie Ward-Wimmer takes off
her parka and blows onto cold hands before extending one to Jan and Anna.
The dogs sniff; Ward-Wimmer pets. Hot tea is served and, as easy chitchat
fills the room, Anna feels instantly comfortable with Ward-Wimmer.
     "First of all," says Ward-Wimmer, "call me Dottie." Anna slips onto
the sofa and Dottie sits next to her, while Jan perches nearby on the arm
of the chair underneath the window. Anna is low-keyed today. As the
conversation sprawls over a couple of hours, Dottie guides Anna and Jan
back always to the children-- finding out what they are like, how their
lives and Anna's illness affects them. Dottie does this with the ease of a
neighbor just in for a chat--all the while extrapolating vital information.
She lets Anna talk at length about her illness, knowing that she must, that
it is necessary.
     "I want to thank you so much for coming," begins Anna. "We're starting
to notice particularly my daughter is becoming a lot clingier. One day this
month, she said, "Mom, I'm going to get cancer." She felt absolutely
certain. She's just turned ten in October. She looks like me, although
she's more slender. She's already had her first period, just like I did--I
was nine and I think my sister was nine also and Lindsay got hers at ten."
     Dottie asks about the history of Anna's cancer and how old the
children were at the beginning. They were four and five. "How did you
explain the loss of your breast?" she asks. "I told them that there was
     something bad growing in my breast and we had to take it off
to protect me. And we just didn't make a big deal of it and, as a result,
they didn't either, but they knew all the facts." She repeats the
often-told details of making the children comfortable with her mastectomy.
Dottie cuts through Anna's upbeat reprise and moves into deeper waters.
"Did you ever cry?" "Yes, oh, yes. I told them I hurt and I explained it
all and they even came with me and saw me get chemo. I didn't hide the
illness from them at all. I'm just not naturally a person who gets real
depressed. I get bored. I can't stay depressed. Sad? Sure."
     "How long does the sadness last?"
     "Hmm, I'll have a day here and there and then I say, "Well, what are
you going to do about that?"' And I'm still sad, but I say, "Let's enjoy
now." I can't go, "Zap! The cancer's gone." So I'm just staying happy and
positive and enjoying my family and the kids."
     Anna recites her cancer history and its frustrating course after it
returned in 1994. Jan says, "Fortunately the kids were away, at my folks'
home in Seattle for two weeks." Anna interrupts. "To me that was a miracle
because I was completely out of control. I was on the phone screaming at
people. I just couldn't believe how stupid everyone was." "Can we go back
to the kids coming back from Seattle?" continues Dottie. "They were
jet-lagged and we waited until the next day. We sat them down, told them I
had cancer again and that it was going to be hard work--that I was going
to probably go through chemotherapy--and I told them, "I'm going to lose my
hair and I'm going to have periods when I'm really tired and I'm not going
to be able to do the things that normally I can do." I said this is a time
for all of us to pitch in and help each other. They were ten and eight;
Lindsay was two months from her ninth birthday. Later that day, Lindsay
snuggled up and said, "Mommy, are you going to die?"' And I said, "Honey, I
don't plan on it." [Later, Dottie said it was a perfectly fine and truthful
answer, but thought that Anna could have then used the question to draw out
Lindsay's feelings, the scariness of the situation.] She went to her dad,
however, and said, "Am I going to get cancer?"' She couldn't ask me." Jan
explains, "She's not at the level where she understands genetics. I think
she was more asking, "Can I catch it?"' like a cold."
     Anna starts to cry. "But now, things are getting muddier. And I don't
     know how ... I mean, I don't know the right thing to say. ... But I
sensed it was time. Last night, we told Lindsay to go to bed and I was down
watching the fire until it was safe to leave it and she came down to be
with me. She just wanted to be there, with her mother. So I know
something's going on. I just can tell. I think the realities and fears are
becoming more evident. And you know I don't hide it. If I'm talking
to somebody and they say, "How are you feeling," I don't sneak off
to another phone to protect them. If I have bad days, they can--they
should--know that. Overall we're really open. But now it's getting harder.
I'm on my third drug and I don't know that I'm going to get this bone
marrow transplant."
     Anna sobs as she relates how Jan insisted she spend more time with the
children, how she gave up the shoe store. Dottie asks, "What did you tell
the kids about why you were retired?" "So that I could focus on getting
well. I said I can't run a business and drag myself down. I have
to concentrate on being with you guys, staying as healthy as I can--"
Dottie asks a vital question that had never occurred to Anna. "They don't
blame themselves that you had to quit to be home with them or anything like
that?" Anna pauses. "I don't believe so. No, I was really clear it had
nothing to do with them."
     As Jan enters into the conversation, Dottie asks pleasantly, "Do you
work at home all the time?" Anna answers, "No, he's here because I wanted
him to be part of it. He's a very internalizing person." There is silence
as the women wait for Jan to speak. "Well, it's difficult to put--probably
a typical male thing--to put your finger on emotions," Jan says. "If
somebody asks me, "How do you feel about something?"' I don't know why it's
difficult. Maybe it's just that it's difficult to describe. It's like if
you taste something and you say, "This is really good," and somebody says,
"Well, what does that taste like?"' You know what it tastes like, but it's
just difficult to describe."
     Dottie nods reassuringly at Jan, letting him know she understands, and
then steers back. "I want to know--who are your children?" Anna begins with
Lindsay, who is concerning her more at this time. Intuitively, Anna is on
target again. Adolescent girls are particularly at risk for psychological
problems when a parent has cancer, according to a study of 117 families. In
addition, Lindsay is dealing with a double whammy. In
     general, more symptoms of stress, anxiety, and depression occur in
children who are of the same sex as the parent who develops cancer. *1
     "Lindsay is very sensitive, very artistic. She's insecure about it,
she's not really sure that she's as smart as she really is. Her
insecurities are coming out now, I think, possibly because I'm sick,
possibly because her hormones are kicking in. I say, "Honey, it's hormones.
Your body is going wild right now." So I try to calm her down with thinking
about hormones sometimes. She's a very generally happy kid. She has her
moments; her temper is like mine. She gets very, very mad and then two
seconds later, she'll be laughing. It's gone. So she's able, I think,
pretty well to work through things."
     "When she's very, very mad, what is she doing?"
     "She'll stomp into her room, slam the door."
     "Screaming?" "No." "She doesn't scream?" "She threw tantrums when she
was young. She loves to hug and kiss and touch and so do I, so we do a lot
of that. And she's fighting growing up. She's afraid of it, and that she's
going to get cancer." Jan adds, "She's sensitive, but she's also tough. She
will stand up to people. When her best friend gets teased at school because
she's the smartest in the class, Lindsay sticks up for her." Anna adds,
"She forges strong friendships. A very sweet, loving, generous person."
Anna's tears begin to fall and she brushes at them with the back of her
hand.
     Dottie asks, "So if you had three adjectives, what would they be?"
After much discussion, they come up with creative first. Jan adds, "I think
if you could make a cross between loving and giving ..." Anna laughs
through her tears. ""Gliving." Yes, gliving actually works." Jan continues,
"She'll almost always share anything with someone--except her brother. And
even usually then, she'll lend him money." Jan provides the third
attribute, "a strong sense of justice."
     "Are the kids named after anybody?"
     "No," says Anna. "We picked names we like so that nobody in the family
would be mad." Jan nods. "We're fairly unconventional." He then introduces
his son into the conversation. "I think that Ellery's fairly
unconventional." Anna adds enthusiastically, "Ellery also is very loving
and warm. We're very lucky. He is eleven years old and that boy still will
come and give me hugs and kisses. Half the time at night, the four of us
     are on the bed with the two dogs, watching TV, talking and playing and
goofing. He still likes to be held and cuddled." The parents continue with
their Ellery list. "A real independent thinker," says Anna. "Like Jan, he
also does not show as much internal emotion. Lindsay will let it out more,
but he's also starting to ask things in a very scientific manner"--Anna
laughs as she looks at Jan--"emulating somebody we know. He's wonderfully
curious, as is Lindsay." And they are both musical, says Jan.
     Anna addresses the fact that "both have been diagnosed as having
attention deficit disorder [ADD]. They both take Ritalin. We went through a
battery of tests and he fit in every way. However, the tests also said his
memory was at postgraduate level. He has an incredible mind, but all of
this stuff in there couldn't come out. Ritalin changed completely how he
viewed himself. Ellery went from hating school, feeling bad about himself,
to being relaxed; he realized how smart he was.
     "He's very creative and there's a cleverness too. He and Jan one day
went to the store to get a prescription for me--" Jan tells the story. "We
were back in the car and he asked about the prescription, "What's this?"'
And I said Dexamethasone. And he said, "What's that?"' And I said it's an
anti-inflammatory. And he looked at me and said, "Dad, Mom is in no danger
of spontaneous combustion." And I had to explain to him what an
anti-inflammatory was."
     Anna laughs. "Isn't that great? His mind is just wonderful."
     Dottie says, "Your kids are so lucky to have you." Anna beams. The
conversation has been very cathartic for her. "I've said to the kids, "We
are the luckiest family there is." You know, I kind of say, "Forget about
my cancer." We talk about everything. The four of us are so happy together
and we do things together and we really are good communicators with our
kids--I think. With what's coming up, though, I want to be as good a
communicator as I can be."
     Dottie asks Jan if he has always been active with the children. Both
nod yes. "We went into this marriage absolutely dead equal," says Anna.
"Anna's always worked," says Jan, who was used to helping with the children
from the very beginning. "Anna nursed with both Ellery and Lindsay. I would
get up in the middle of the night, bring them in and put 'em down in the
bed, and then take 'em back." Anna says, "I think Jan has really great
mothering instincts for a father. A lot of men don't have that."
     Anna returns to her fears if she should die. "What I'm concerned
with--and he knows it--is his inability to talk about things. The one fight
we've had during all of this is when I said to him, "Stop treating me like
a patient!" Because that's a safe haven for him. That's how he can express
how he feels--in a medical way. [Anna also sometimes hides behind the
technical.] He's comfortable there, but it's removing himself a bit too.
     "And that's got to be the wrong way, I think, of dealing with the
kids. The three of them need to be able to have a good dialogue. I just
start in--blah blah blah--and cry and the kids know it and we hug. And he
doesn't do that. It's going to be harder for them to express themselves
because he's not easy at doing that." For the first time, Jan protests, a
bit defensively. "I talk to the kids pretty well." "Yeaaahhh, you do, but
it's going to be emotional, it won't feel logical. You can't isolate with
this, put it in neat little boxes," says Anna. "There aren't going to be
any little boxes."
     Jan now admits his fear. "Especially dealing with Lindsay is something
that I know I can't do by myself because of where she is in terms of
growing up. She's going to have to have some surrogate women around." Both
say that Roseann--childless, immersed in her full-time career and life with
her husband, could not handle this task.
     Dottie starts to ask, "What about--" Jan breaks in. "There are some of
our Richmond friends, Lockie and Tina and people like that." Anna says,
"But they're not here, that's the problem. Those kids have known Lockie and
Tina for years and feel pretty comfortable with them." Anna cannot bring
herself to think of someone taking her place. "Again, the one-on-one isn't
there. I can't think of who that could be."
     The dog, Peaches, snuffles into the room, plaintively whimpering. Jan
gets up to take him out. Dottie suggests that someone outside the family
might help. "Sometimes what's helpful, while Mom is still alive and here,
is to introduce them into a counseling situation. You set up some visits as
an introduction because--and it's just that clear, honest, and simple--
"what's happening in our lives is tough." You can tell them, "It's not
usual, it's not what all your friends are going through. We deserve to have
as much support as we can and there are wonderful people who do that." I'm
not saying it has to be me."
     Anna interjects firmly, "No, I want it to be you." "There are lots of
     wonderful, good people out there," continues Dottie. "It's not
uncommon to do this. The kids come in and you meet with them three, four
times, whatever. And then periodically. So if and when you die, your kids
don't need to find a stranger. There's this support network. And when there
is a miracle and your bone marrow comes through--they've met somebody nice
and there's somebody who can celebrate with them and say good-bye to. It
has not been a negative experience. That's one thing that we can do, even
when there are lots of people in the family."
     "Would you want to work with them together or separately or both?"
     "It depends. When you're working with children, you follow them.
Initially I generally spend a bit of time with the kids together and then
have some private time. Family situations are all different. There have
been times when I've worked with whole families. But when there are
brothers and sisters, there usually needs to be some private time because
the guy things are separate. And sometimes the guy wants a guy counselor.
It has to be individual and respectful of who the kids are and what's right
for them. We all need to do this."
     Dottie points out a fact that families often neglect to their
detriment, that bereavement begins at the time of diagnosis. "This kind of
stuff is wonderful even for people who are probably going to get better,
absolutely. We all need support in our lives sometimes." Often a neutral,
non-emotionally charged outsider is best at supplying that support, she
explains. Anna tells her that they have always encouraged the children
to talk to their school guidance counselor. "They've both been very good at
doing that. We're happy they have other ways to express themselves besides
just trying to talk with us. I'm all for it."
     While Jan is out, Anna uses the opportunity to shift to the hardest
subject. "What about dying at home? Does it affect ... I mean, this is
something ... it's a real plummet for me," she begins haltingly. "On the
one hand, I think, for a patient who's dying, to be at home is neat. But in
my case, I'm looking at this and thinking, "No way!" I don't want this
house associated with that kind of trauma for Nils-- that's his middle
name--or the kids. I don't want them to walk back in that bedroom and have
a vision of their mother, lying probably bloated and looking really ..."
She cannot finish the sentence. "If they're going to have that vision, let
it be in some antiseptic place where they can disassociate themselves.
     Is that a smart thing to do? This has been a real head twister for me
and I don't know. My instinct is "Don't die at home.""
     "Where do you want to be?" asks Dottie.
     "I don't care. They haven't built a hospice place in Montgomery County
yet. I don't like hospitals--but I'd go there. Once I'm in morphine land,
I'll be pretty whacked out. I just don't want to traumatize them. I think
it's going to be bad enough."
     Dottie takes a breath and then quietly and calmly goes about trying
to give Anna guidance concerning her jumbled feelings. "Kids are
traumatized by things that they don't understand, by things that they can't
participate in--that they have to stand there and watch and can't do
anything about. And by things that they don't have a place to process
afterwards and it's an open wound and it never has a chance to heal.
Children are not necessarily traumatized [by experiencing dying]. I've
worked with literally hundreds of families that have made these kinds of
choices and when the decision is one that's made by all of you together,
it's perfectly appropriate. Difficult, excruciatingly difficult, but very
appropriate when the time is right for you guys to be talking about this
and to ask, "What's right for Mommy?"'
     "Because one of the things that's going to comfort them afterwards is
knowing that they did everything they could, that they did the best they
could for Mom. "Mom said she wanted to die at home. Well, by God, we're
going to do our best to make sure that happens." Or "Mom said she wants
to die in the hospital, not at home. Well, by God, then we did our best
to make that happen.""
     "So communicating it is--"
     "Absolutely," jumps in Dottie. "It's not really where [one dies], it's
how we deal with it. And in terms of a memory of you being bloated or
not--again, those kinds of stark pictures that you view are sudden drastic
shocks. Like when the last time they saw you, you were fine and healthy in
tennis shorts and you had hair down to your shoulders and now they come in
and see you, that's when it makes that kind of imprint.
     "But they're looking at you every day. They're not looking at you
physically. They're looking in your eyes. They're cuddling up to you. They
don't know whether they're laying on a boob or a rib. They're laying on
Mommy. There needs to be a connection. And the business of Lindsay
     being more cuddling now, that's fine. This isn't all conscious kinds
of stuff. Some of it is generated by a scaredness. And some of it is
generated by an awesome appreciation of "she's here now, I'm going to love
her while I can." Your husband said it to you. "If you don't spend time
with the kids, I'm never going to forgive you." If you didn't spend time
with the kids, you wouldn't forgive yourself. They gravitate to you--some
of it from this kind of scary, sad place and some of it is from "This is
wonderful," a sense of appreciation that it's not all bad."
     "I never even thought about that," says Anna. "They have been
wonderful, like when I can't get out of bed, they love to feed me dinner.
They call me "baby bird." "Feed the baby bird." Ellery, I've used that boy
to walk. He's said, "Here, Mom, lean on me." And I've been able to support
myself with my son, my eleven-year-old kid, holding me up."
     Dottie nods. "That's good for them; allowing them to help is very
important. It's a terrible feeling to be shut out. It's much better for
you, too, to be around them even if being around them is hard, because it
allows you to be included and not isolated and it allows you to be able
to participate and to give something. And you will all have that later-- "I
gave, I tried. We did everything we could do." And that's an enormous
comfort."
     Anna seems in awe. "I never thought ... all I kept thinking about was
all they'll see and how they won't be able to go in the room and they'll
start to hate the house because I'd died here."
     "Talk to them about it," suggests Dottie. "Again, you're a creative
family-- are you kidding? You'll do it in the garage if that's what's
right." Anna laughs. "Some people say, "I want to be at home, but I don't
want to die in the house, so when I'm just about ready to die, put me in
the ambulance and take me to the hospital." Whatever," continues Dottie.
""Put me in the car and let me ride around the block." That may sound
nuts--but this is your life, this is your time, their life and times. There
is nothing that you can decide to do with that time that's wrong."
     "But I want it to be as right as it can be for everybody," protests
Anna, "not just me. What makes me the happiest is what's right for the
unit." "How many times have you been through this before? I don't think too
many," says Dottie archly as Anna smiles. "So you don't know until you're
in the middle of it. With the children, you'll make some decisions
     together. You'll write them in pencil. So if you're in the bedroom and
all of a sudden Dad, one of the kids, or you say, "This is too hard, it's
not what I bargained for, take me to the hospital," that's okay, because
you've written it in pencil. Nobody's making promises. The only promise is
that you will do this together in the best way that you can and your
promise is that you will tell each other what you need as you go through it
because you can't plan it in advance."
     "That's so wonderful," says Anna, sobbing. "That's a great way. I
didn't think like that. I was stupid not to. We've done that all the way,
but for some reason, suddenly I'm thinking, "No, no, I've got to protect
them." And the word "protection" is equated as shutting them out and that's
wrong." She wipes her eyes. "That's really cool. I like that. Yeah."
     "You let them self-protect," says Dottie. "They will do that."
     "Now, when is the time to talk about this?" asks Anna. "At this point,
they know that I'm fighting. I haven't decided yet I'm definitely going
to die," says Anna, firmly. "I know the score and it may happen, but I keep
going, "Hey, I can do this for another year, come on liver, keep
functioning." So there's the "what if" game. What if you sit 'em down and
say, "Guys, you know there is a chance that I can die"--and then you hang
around!" Anna laughs. "And so you've put them on pins and needles--and I
don't want to make the situation scary. Yet, I don't know. That's why I was
asking--"
     Jan has returned and he nods in agreement with Anna. "The problem is
striking a balance between being up-front and dwelling on it. They know all
about the cancer, but you don't want to sit around talking about it all
day. That just doesn't make sense. You've got to go on with things."
     Dottie smiles. "As much as I'd like you to need me and my advice, it
sounds like you people have a wonderful knack for striking balances
already." She reiterates what she told Anna about counseling for the
children and stresses, "If the kids say, "Everything's okay, I don't need
this anymore," fine. You all keep the phone numbers. From time to time,
they'll come or they won't. Sometimes they don't come at all, which is
fine, but because they know it's there, they don't have to. There's that
little cushion."
     They talk about how will they know if something drastic happens
emotionally for the children, what are the warning signs. "One key word is
"changes,"" says Dottie. "Just be aware if the child has a real big
     change that persists. There's a difference between Lindsay becoming
cuddly, which is fine, and this normally independent kid not wanting to go
to dance class, Girl Scouts, whatever, because she needs to be near you all
the time. That's off balance. Look for a big change. A child who is
normally a crappy student suddenly starts getting straight A's?--you worry
a bit. What's he bargaining out here in order to try and keep things safe?
And you just look at them in the four regular areas: Are they eating fine?
Sleeping fine? Playing fine? How is their schoolwork? The area of big
changes."
     Anna mentions outside forces that could be compounded by her illness,
such as Lindsay's departure from a one-on-one nurturing teacher to several
different teachers. "I've noticed a real change; she doesn't like this new
situation. Is that normal or is this part of her worries about me?" "It
makes sense," remarks Dottie. "She had one nice teacher and now she has
three that she's not connected with." Anna says, "Fifth grade is more
adult, there's more responsibility placed on her. I just worry between that
and what's happening with me is that she's not going to do as well. She got
straight A's last year, but grades are slipping some. I harp on it a little
bit."
     Dottie makes the situation less drastic. "So she doesn't like it, plus
she's distracted," she says with a shrug. Anna interrupts. "She's
distracted by what's happening here." "You can't ignore that," agrees
Dottie, "it plays into it. But it's not just you that's causing what's
happening at school." "I know," replies Anna, "but it's all happening at
the same time and it's a lot." She talks about how Lindsay is spreading
herself too thin with ballet and chorus and how she and Jan drew the line
and would not let her be in the variety show. "I said, "You've got to have
time for you.""
     "You said something very important--for the kids, for Jan, and for
you--and that is "You've got to have time for you." Meaning you've got
to take care of you." Dottie starts in on her last project of the day,
to make Anna and Jan realize that they too need help. "He's going to throw
something at me," she says, smiling as she points to Jan. "It might be
useful for you, too, to be introduced perhaps to a counselor, just to meet
once or twice. I'm not saying this lightly: the most important thing that a
parent does for his child is to take care of himself. If you want
statistics, I can pull out a Boston study. Kids who get grief support and
their parent who gets none do not do as well as the kid who gets grief
support and
     the parent does too. This has been my big concern with those who say,
"I don't have to worry, I'm going to be the one that's simply fine--"'"
     "I know!" exclaims Anna. "That's what worries me about Jan." She
champions Dottie's suggestion of counseling--but only for Jan. "So I agree
a hundred billion percent. I think that's going to be critical and he will
try and be Superdad and he will get stressed out." Anna, who generally
feels that her open personality conquers all problems, ignores a salient
point. Dottie is suggesting counseling for them both. "Get recommendations
from people that you trust. Talk to 'em, meet a person once. If you don't
connect, I don't give a shit if they're Einstein and Sigmund Freud rolled
into one. This work is done from here," she says, pointing to her heart,
"it's not done from here," pointing to her head. "I can give you some
names."
     Anna sails right on, back to Jan. "I've already bugged him because I
got the book How We Die, given to me by a friend. I read it, felt wonderful
and uplifted, and thought it was great. He wouldn't read it. I was like,
"Come on! Read this book!""
     Dottie stops her firmly. "Let's understand, we are talking here about
a process--we are not talking about rules and milestones. It's like you two
are out in a canoe and neither one of you knows how to swim and the canoe
tips over. Sometimes the worst thing you can do is try to hold on to each
other, because you'll both drown. You each have to reach for your life
preservers. You can swim side by side, sometimes you'll be paddling here
and he'll be paddling there. You can keep calling to each other, but you're
going to be doing this not always at the same rate."
     "Well, I'm so straight, up-front, in your face. It's the way I am,"
says Anna. Jan adds, "She's not going to quit until everything on the list
is done. With me, it's "Aw, do it tomorrow." I don't take well
to regimented situations."
     "May I ask a tough question?" asks Dottie, looking at Anna and placing
her hand on her arm. "Is there one thing in particular that really scares
you, maybe terrifies you, about this?"
     "Well," says Anna, quickly turning to tears. "Hurting my kids. Hurting
my kids. I know--I think--Jan'll get through it. Our friends are the most
wonderful people in the world and will be there for him forever. I worry
that he'll hide, or whatever, but hurting my kids, I just can't stand
hurting them." Her words come out strangled as she sobs heavily. "And
     this hurts them and I hate it, I hate it, just knowing it hurts
everybody and there's nothing I can do about it. I'm not scared for me,"
she goes on. "Hey, I'm doing the best I can do and I feel really good about
my life, I feel very good about me. I look back and I have nothing
to complain about, so I'm happy about that. And if I do die early, that's
the way it goes. But the thought of causing or being the cause of so much
pain to my kids, it tears my heart out. They're at such a young age too."
The sobs come harder. All the while, Dottie has quietly and lightly patted
Anna's arm, not interrupting or attempting to stop her tears.
     "When my mom died, she was seventy-nine, we got to say good-bye. I'd
been able to grow up with her and I feel like there's going to be so much I
could have done with them that they're not going to get. It's going to hurt
them. It's not going to give them quite the edge. It's not going to give
them the advantage, and I hate that. I really hate that."
     As Anna grows quiet, Dottie asks, "Do you know it's not your fault?"
     "Yes, I know there's nothing I can do about it, but it's frustrating.
I'm a person who likes to control that. See, that's the problem. I know
it's not my fault and I know there's nothing I can do about that and dammit
I want to do something about that and I can't. I can't. I know that."
     "But there are ways to be there for them," suggests Dottie. "There are
ways to kind of direct them as they grow and it might be as simple as
having a videotape."
     Anna nods. "I'm going to do that. And letters, yes."
     "Write not just about them. Tell them your story. Write them what you
remember about being sixteen for Lindsay to open on her sixteenth birthday.
Write about what it was like for you to go on a date for your son to read
when he thinks about dating. "What's it like on the other side, to be a
girl?"' Tell them your story. Give them you. You might not be here
physically, but your story can be. Your story can be a part of their lives.
And that's important. Write down all of your memories."
     "I had planned to do things for odd moments. "Watch this when you are
so mad at Dad that you want to take a brick and whack him"--you know. I
could spend time and do this for the kids." "Write all the instructions in
pencil," cautions Dottie, "so that you are saying, "If you don't want
to watch these ever, you never have to. They're just here." Because
sometimes the thought of having to look at Mom and having to
     remember hurts. So write it in pencil. Then it's a gift with
absolutely no strings. And they will open it and they might show them
to their grandchildren. There are so many ways."
     Anna returns to her thoughts of dying. "Oh, I hate it--" Dottie
insists, "You're not hurting them." Anna says, "Yes, but they will hurt."
Dottie says, "They will hurt in life a thousand times," then lets Anna know
that she understands--"as a mom, your job is to keep them from hurting and
this flies in the face of that." Then she turns the conversation around.
"You've thought obviously a lot about this. What do you want from them? All
things being equal, say, you don't need to protect them. They're fine. Is
there anything that you need that you would want?"
     "I don't know what it is." "While you're dying?" "Oh, I don't know,
just their love and support." "Do you want to be alone, do you want
somebody with you?"
     "To be honest with you, it changes," says Anna. "I think I would like
them all to be with me but not necessarily in the house--but now I'm ready
to say to them, "Do you want me in the house?"' I want to be with them, I
really don't care where we are. But I care if they care. I guess that's
what's important to me. If they don't want me in the house because that is
a hurtful memory and they see this house then as a sad place, I don't want
to be here. Because I've never been a sad person. There have always been
jokes, fun, that's what I want them to remember. But I want to be with
them, yes. In that book How We Die, he says that about ninety percent of
people die alone. My dad and my sister were in the house, but Mom died
alone in that bedroom, nobody was with her."
     As Anna winds down, exhausted, Jan looks at her with empathy in his
eyes. Dottie gets up to leave. Anna says she will be calling her to set up
an appointment for the children. Dottie gives her a long embrace, then
turns to include Jan in the circle. For several seconds, the three of them
hold on to one another. Tears course down Jan's face as he too sobs.
     Later that week, Anna reflects on their meeting. "Dottie is so
wonderful, she reminds me of my mother, sitting there, listening, patting
one softly on the hand. What was fascinating was what Dottie said
to me--about them participating so much and how I should not take that away
from them. She really opened my eyes. My whole thought about dying at
     home and all. And she is so right, how they are helped by helping me.
So when I thought about that, I went, "Wow, this is going to be a group
decision." And I never saw that as how it would be."
     Anna sighs and says, "I can't let my preconceptions get in the way of
reality."
     A few weeks later, in January of 1996, Anna and Jan sit down with the
children and tell them about Dottie. "The timing couldn't be better," says
Anna. Marcia, the school counselor who had helped Ellery and Lindsay in the
past, was in a car accident and on leave indefinitely. "I used this
situation as the doorway. I said, "Guys, Dad and I met a person named
Dottie and she counsels all kinds of kids. Kids who have AIDS, kids who
have this, kids with that. Kids who have sick parents. You guys have
extenuating circumstances, I can't quite do what I always did and you guys
have to pick up the burden of that. You don't have Marcia any more and I
know there's a lot on your mind and sometimes you can't tell us or don't
want to tell us everything because we're the problem."
     "I said, "You have nobody really as an adult who can understand, and I
think Dottie would be perfect. She's going to be your person. I am very
excited about it because we had an immediate warm feeling about Dottie and
we just connected and I think this will happen to you. She is a
professional and understands children and she's going to know how you feel.
She's going to keep whatever you say or do private. You guys need one
person like that who's continuous in your life. It's really nice to have
that one person you can talk with." And I told them about the clay wall.
"She's got this wall where if you get mad about something you go pick up
clay and whack it at the wall."
     "Well, they thought it was a great idea! They never balked at it."
     Their first Sunday afternoon together, Dottie explains to Ellery and
Lindsay that they will meet a few times and then go from there. Purposely
in front of their mother, she stresses that "this is your time to talk
about whatever you want. Or not to talk. Just play for an hour." Ellery and
Lindsay smile. "Nothing you say or do will be repeated by me to anyone. The
only time I would ever say anything to your mother is if there was
something that would possibly physically harm you. She needs to know about
that. Other than that, you can tell your mom and dad what you want--or you
don't have to."
     During their first session, Anna stays downstairs while her children
walk up to the third floor with its huge, floppy beanbag chairs and toys
and stuffed animals.
     Although the children seldom tell their parents what transpires during
these monthly sessions, Anna and Jan have learned to listen in other ways.
The first time, as Anna hears the slamming of clay against a wall, over and
over, and then sees the flushed and relieved faces of her children, she
knows that she has made the right choice.
     CHAPTER NINE
     All in the Family:
     Masculine and Feminine Grieving
     On a balmy Florida morning in January 1996, Anna is as happy as a
released prisoner, having left behind a D.c. blizzard and freezing winds.
Her clownishness abounds. This time, Anna's chemo treatment is not
drastically damaging her hair follicles. Anna's dark eyebrows have returned
and she is growing a head of dark hair, the fledgling outlines of an
attractive short cut. The texture is as silky soft as puppy fur. "I tell
you, it's animal hair!
     "Look," she says, jumping up in her father's den in his Cocoa Beach
home and rubbing her hand across her face. "I've never had so much hair on
my face ever!" There is dark fuzz down her cheeks and the back of her neck.
Looking at her children, sprawled in pajamas on the floor in front of the
TV, Anna contorts her face, makes monkey sounds, dangles one arm low, and
scratches herself under the armpit with the other. The family howls and
Ellery says, "Mom makes the best monkey faces." Her father's eyes shine
with happiness as he watches Anna. "Friends tell me I can wax it off, but
I'm going to wait and see the upcoming MRI, which will tell whether the
medicine is shrinking the tumors. If it isn't working, I'll be on another
chemo set and it will all probably fall out again."
     Anna is genuinely able to joke about her plight at this moment, but
she is also performing a valuable service for her family, helping them
adjust to changes and stages of her illness in a nonthreatening
way--casually introducing the thought, for example, that she might have to
     turn to another set of chemotherapy treatments. Anna is following her
instincts, without any guidance, yet she would make an enviable text case
as the near-perfect way to achieve what the experts call redefining. This
step of redefining --being able to look at oneself honestly and adapt
to the changes in one's condition--is critical, in order for the patient
and the entire family and circle of friends to accommodate to adaptations
dictated by illness. *1
     When patients succeed in redefining, as Anna does, they ease the
process for the rest of the family. The family can enjoy one another and
get on with what has to be done, adjusting behavior and patterns of living,
rather than struggling to "maintain a false sense of normalcy." *2 Anna's
family show signs of successfully redefining Anna and understanding her
current goals. "I think Anna has made the decision that she's going to try
to raise the kids as much as she can in the time that she has," says her
brother Steve. Her mother-in-law, Phoebe, shared that thought at
Thanksgiving. "I think she's trying to stay around as long as possible. She
knows there's very little chance [of a cure], but if anybody has a chance,
she'll have it."
     When patients cannot redefine themselves, they are filled with a sense
of rage, worthlessness, and curdled frustration that permeate the entire
household. If any family member remains unwilling to redefine the patient,
this too affects everyone; tension results "as family members try to evade
the effects of the illness. ..." The pattern in such families is not
to acknowledge feelings or uncertainties. "There is no resolution because
they ignore problems, assign blame, refuse help. Instead of coming
together, they focus on their own emotional needs with little regard for
others." The resulting pain, resentment, and anger can rule their emotions
for years. *3
     A classic example of how damaging this can be lies close to home, in
Anna's extended family. "My brother, a heavy smoker, died of lung cancer
when his twins were fifteen," recalls Phoebe. "It was treated like this
terrible secret. His children were told nothing. His wife couldn't talk
about it at all. That was in 1984, and she still hasn't gotten over it. The
twins have a lot of anger still because they weren't told enough and
weren't able to talk to their father or mother about his illness."
     One troubling common factor among men is that even in long-term
     illness there are often no good-byes. The story of one adult son
illustrates how one can suffer when a father refuses to talk about his
illness. His father's daily jokes placed few burdens on friends or family.
As admirable as this was, the son wanted deeper moments. His father's
approach left no opening for sentiment, discussions, or, importantly,
farewells. If the dying person or the survivor cannot express his or her
feelings, creating closure is always difficult. His doctor joined forces
with the patient, telling the family nothing and giving false hope.
     Redefining, of course, does not come easily for Anna or anyone.
Realistically, altering one's sense of self is a wrenching passage,
achieved only over time; it is marked by anguish in letting go and in such
grieving as Anna's loss for her full-time career and concern for her
children's future.
     Yet, when the patient can redefine himself or herself as Anna
does--viewing herself as someone who still has accomplishments, still sees
the "essence" of self and life--he or she is showing those around him or
her that redefining does not mean giving up. Because Anna has hope, others
can hope as well. Her attitude--"I'm not dying now. I'm living"--makes it
easier for her to adapt to everything from new ways to utilize her mind and
talents to coping with the medical roller coaster: "It's a new chapter,
much more geared to my physical capability." So if one chemo doesn't work,
we'll try another. So if I can't work full-time, I will work full speed on
the ballet and help to edit a friend's attempt at a first novel. If Lindsay
and Ellery need to be prodded about homework, by God, I'm there instead of
at the store. If I have to lie down, I'll lie down. The specter of dying is
offset by heightened appreciation of life and an urge to live it to its
fullest.
     And Jan is the near-perfect husband for Anna. Although she is
disturbed by his inability to express feelings, he is firmly by her side,
redefining their life together, step by step, with a near-intuitive ability
to understand and adapt. He may not be able to speak of it, but he shows
his love and concern daily in countless ways. Like other spouses who
successfully redefine the patient, Jan acknowledges physical changes but
takes them in stride. He patiently recognizes that Anna's changes in moods
or abilities stem from her medical treatments or cancer, listening quietly
and reassuringly as Anna obsesses at times about the children or what will
happen to him, taking over chores while not interfering with Anna's fierce
desire for independence. He knows that her dignity demands this, even if
she sometimes stubbornly overdoes it.
     Before they left for Florida, for example, there was Anna, shoveling
snow while loaded with chemotherapy. On the day they were supposed to leave
for the South, her doctors wanted to hospitalize her for a transfusion.
Anna knew as well as the doctors that her white and red cells were
dangerously low. "I just told them, "No way!" My body and soul needed care
and contentment, something that I knew no hospital could offer." For all
her directness, Anna compassionately shields those she loves. Unbeknownst
to her father, Anna and Jan go into the bathroom and shut the door. Jan
fills a vial with liquid as clear as water and shoots it just under the
skin of her stomach. These series of shots will help the bone marrow
to resupply the body with red and white cells. "I'm taking a slower route
to recovery," says Anna, "but it is right for me, nonetheless."
     On Thursday night, the family celebrates a trio of January birthdays--
Jan, forty-three; Anna's father, Stephen, eighty-one; and Anna's brother
Marty, forty-five. Husbands and wives and nephews and nieces and cousins
filled a U-shaped table at the nearby Country Club of Rockledge as
twenty-two Megregians share dinner. As the dinner ends, the Megregians mill
around. Anna listens to a seventeen-year-old niece who is crying, telling
Anna about the cyst on her ovary. Anna holds her hands, hugs her, listens
with a total concentration reminiscent of her mother. At the far end of the
table, brother Steve, the university comptroller and master punster, tops
himself with each play on the word "lapsadaisical," stemming from a
sentence in which someone used the word "lapse." "Hey," he says, waiting
for the groans, "I never promised you a prose garden."
     That weekend, Anna and her father are determined to play golf, no
matter that both of them have been battered by illnesses that make walking
and swinging difficult. This was always their special time together,
kibitzing and laughing as they circled eighteen holes. And so early on
Sunday morning, after a bulging breakfast at the country club, they move
toward the first tee, along with Jan and Anna's brother Steve.
     Although the upper body of Anna's father is strong and muscular, he
     is stooped from the waist with pain from a back operation that did not
properly heal. His bedroom nightstand is cluttered with medication for
diabetes and high blood pressure and with painkillers, yet, although he
never complains, the pain is seldom dulled. His craggy face is creased
with the grimaces of agony, and his deep brown eyes speak eloquently of his
sorrows for the loss of his wife and for his daughter's illness, but
Stephen Megregian's smile is as buoyant as his jokes. "I've had so many
illnesses, I figure I should have died years ago. Nowadays I'm just happy
I'm on the right side of the grass--looking down instead of up."
     More than a half century of golfing are in Stephen's arms and so his
sureness of form overrides crippling pain as he swings and hits the ball a
respectable distance. Anna, rusty and clumsy on feet and legs filled
with the pain of neuropathy, hits the ball a shorter distance. She shakes
her head in disgust as they move on down the hill and out of sight.
(afterward she beams, once again able to redefine her definition of
success. "I thought I'd only do half, but out of eighteen holes, I sat out
only three.")
     Meanwhile, Ellery and Lindsay eagerly race off with a friend to an
amusement park where go-carts and video games gulp quarters like a weary
runner gulps air. Ellery is all over the place, trying machine after
machine, expertly wasting enemy aliens and bad cowboys who fall down to his
touch at the lever. Both are so mesmerized that the friend has to call a
halt in order to get them back to the country club in time for lunch.
     The day before, Anna's dad sits in his favorite worn leather chair and
talks, taking time out from his New York Times puzzle books that Anna buys
him by the handfuls. He is expressive, volatile, and intense as he brags
about Anna. "She has friends coming out her ears--keeps 'em forever and
really cares." He cannot, however, talk about how he feels about her cancer
or a fear of losing her. Instead, he speaks of illnesses in general and
runs through his own medical saga, including his own operation horror
stories. The loquacious Stephen, however, cannot express his emotional
suffering regarding his wife's searing death and his continued loneliness,
or his current pain about Anna. Neither can his son or Jan. Men often seem
relieved when women take on the process of open grieving, coping, and
adjusting for the entire family.
     The multigenerational ripple effect of prolonged illness, grieving,
     and accommodating overlap in the Megregian-Johannessen homes, as they
do in so many families. The death of Anna's mother continues to spawn
disparate emotions; Ro's resentment at her brothers for "having to do it
all" when she was dying, Anna's reliving her days with her mother now that
she is seriously ill, her father reeling from one severe loss only to be
hit by the potential horror of losing his daughter, disagreement among the
siblings as to what should be done to help their father.
     As for Jan's parents, there is increased concern for their son as well
as their daughter-in-law. "In some ways, it's probably more difficult for
Nils to watch this than to have it happen to you," says his mother,
"particularly when he knows so much about it." Many family members
experience guilt, resentment, anger, and helplessness when they are torn
between caring for someone who is ill and their own responsibilities and
lives. Often it is the adult child, facing the disruption of caring for
elderly parents. Other times, as with Anna, it is a parent who experiences
such feelings. Phoebe says, "The cancer recurred just after we moved
to Seattle. Had we known, we probably would have stayed nearby, to help
with the children and at home. We moved not knowing she would need us. We
felt a number of guilt pangs about it." She adds, with finality, "But it
was done." An unspoken guilt seems to linger, but she is adamant. "I can't
come here again. I am very fond of the children and I can have them for
visits and I can visit them, but I can't do much." Phoebe cannot describe
how this makes her feel. As she states often, "We do not talk about our
personal feelings. We never did it."
     That stiff-upper-lip upbringing feeds Jan's general male inability
to discuss feelings. Like so many women who live with men who cannot speak
about their emotions, Anna not only is frustrated, she is convinced it
would be cathartic for him. "When we were young, I used to pick a fight
just to get his reaction," says Anna. "I wasn't very successful. No
reaction! Once when we were driving, he just turned around and started
screaming at me--over things I had done six months to a year prior! I
looked at him and burst out laughing and said, "If you've got a problem
with what I'm doing, you'd better tell me at the time. I can't do anything
about what I did six months ago. From now on, you've got to communicate
with me right here and now." I realized, "You poor guy, you've held all
this in, and we could have had a good fight!" He's gotten a lot better
     but often remains this big giant clam." "Nils learned a lot from Anna
about talking more," says Phoebe, "but it doesn't come naturally."
     Nor does it come naturally to the males in Anna's own family when it
involves serious emotions, no matter how close they feel to one another.
Listen to Stephen, the father, and Steve, the brother, dance around their
emotions.
     What about when Ro got cancer?
     "That was very upsetting," recalls brother Steve. "As a matter of
fact, when they did the mastectomy, she didn't know I was coming. I walked
into her hospital room and shocked her. I told my wife, "I've got to go."
And she said, "Okay, go, I understand." So I went."
     How did you handle your emotions then? Did you talk to your wife,
Bonnie, or anybody, about it? "No, I don't talk much about how I feel. But
I figured that, well, there's not a whole lot I can do. That's the way it
is. They gave Ro six months to live and it was very upsetting to everybody.
Dad wore it more on his sleeve than I did. But he didn't feel any more or
less upset about it than I; he was just a little more open. I figured,
"Hell, she's my sister and I love her, but what can I do? She's got it.""
     His father continues, "All of a sudden out of the clear blue, Ro's got
this cancer thing. I don't, what should I say, jump at the first bump. It
has to sink into me for a while." The clich`es flow. "Like Steve says, we
have to take the things that we can't control and just roll with the
punches." His son nods and says, "If you can't do something about it, you
can't." "If there's something to be said, we say it," says Anna's father,
"but if there is a problem that we can't do anything about, we don't go
into any histrionics. I expected Audrie to outlive me. I figure I should
have died long ago. But I survived and she didn't."
     How did you cope with that?
     "What can you do? Religion? No." He shakes his head firmly. "It
doesn't belong in my life at all." Did you ever go to a survivor group and
talk? "Naah, I didn't do that stuff," says Stephen. "I've got a strong
head. Maybe too strong." He pauses. "You may have a picture of our family
as having an intense nature, yet we live every day without any thinking
back."
     Stephen does not seem to fathom that, despite his words, he goes
through a cathartic grieving ritual every time he sees Audrie's face and
     medals on the den wall, talks about her, relives their life together,
and cries. "When we start talking about the old days, tears will come
to his eyes--but he loves to talk about it," says his son Steve. "I think
that's one of the reasons why he'll never leave this house." Both Anna and
Ro feel it would be best for their father to move, but he had made a
deathbed promise to Audrie to stay. They feel their brothers don't do
enough to help with the upkeep. "Look," says Anna, pointing to the screen
affixed to a part of the roof that has collapsed. "It goes to the roof! The
whole damn thing is going to fall." "So what if the roof leaks?" says
Steve. "We'll fix it. I don't get mad, I just ignore it."
     Their father resists pleas to move. "I don't need this big house," he
admits, "but it has Audrie all through it." He is comfortable having her in
the house. "He's not a bit spooked about it," says his son. "In order
to try to ease their minds a little bit about me being alone," says
Stephen, who is adapting to getting on with life, "I got a girlfriend. It's
nothing special. I have fun. I play duplicate bridge three times a week. I
took a cruise. And I have my crossword puzzles and golf three days a week."
     How do you cope with a mother dying? Steve is asked. He does not talk
about what he did to handle her death but concentrates on the positives.
"She was almost eighty, she lived a good, full life. I would have felt
differently if she would have died at a young age. Quite frankly, it was a
blessing when she died because she needed to be out of her misery." And
then another platitude, "When your time has come, it's come."
     Even Wayne, Anna's dearest male friend from Richmond, who feels
"closer to Anna and Jan than my family," admits that he and Jan do not
discuss feelings. "My job is to make people comfortable. I'm the
approachable icebreaker. I empower them." Wayne thinks of active ways
to help Jan. "I want to make sure we get him out on the water with us. I
crew for Chuck, another friend. We need to get Jan in with us, a break from
all of this." Anna loves talking with Wayne, who concentrates on the good
times and encourages her with "Let's just live another day." Yet there is
far less an attempt to hear her out than her female friends. "When she does
break down at times and worries about the kids," says Wayne, "I try
to defuse the emotion, talking matter-of-factly." Wayne stops and
acknowledges what he has just revealed--how he closes down any opening for
more expression by endeavoring to "defuse the emo-
     n." "I'm probably like Jan," he says ruefully. "I'm taking it like a
man."
     "Taking it like a man," "Only sissies cry," "You have to be the big
man in the family and take care of your momma." Any number of clich`es of
past culturation come quickly to mind that explain to some degree why men
are trained by society to show less emotion. The men in Anna's life are the
norm. Many women consider that men are emotional cripples in all walks of
life, but particularly as grievers, because of societal emphasis on
so-called masculine attributes of self-reliance. A more realistic question
for women should be not whether men grieve--because they do--but why they
grieve the way they do. Silent or private mourning and immersing oneself in
activity are both patterns of male grieving. Taking action is not ducking
the emotional but rather a form of coping and healing, and can be very
effective. Bottling up one's feelings without any accompanying positive
action, however, can lead to major blocks in family relations and often
dysfunctional ways of handling grief-- denial, closing off from spouse and
children, misdirected anger, heavy drinking.
     "Men and women tend to be suspicious about the others' mode of grief,"
writes Thomas R. Golden, a psychotherapist who specializes in masculine
grieving. "He may think she is "overdoing it" as she emotes. ... She may
feel that the man is not actually grieving because he grieves in private or
through action." *bled Women generally seek more help than men, either
through friends or professionally, while many males believe, as one man put
it, "I don't think a stranger can say anything that would help me." Men
often attend counseling sessions as protectors, patting the wife's hand,
sitting stolidly next to her, not as seekers of help.
     "Many men find some of the current counseling approaches very
intrusive," says Kenneth Doka, internationally known death educator and
minister. "The "how are you handling it?"' directness often interferes with
that self-reliance sense." The trick is to find new ways of dealing with
masculine grieving, says Doka, who finds that counselors are often
unprepared to deal with grieving men. *5
     Often these silent grievers find some oblique way to work out their
feelings. For example, one son who resented his father's constant and
critical interference with his hobbies refused to finish a model boat. When
     his father died, the man went back and finished the boat, coming
to some resolution regarding their relationship. No longer are male
relatives able to take charge in such a hands-on way as making the simple
pine coffin, but many find comfort in such activity as making funeral
arrangements, planning and building some memorial, as do some women.
     Of course, there is no absolute gender pattern to mourning. Don't tell
the Mothers Against Drunk Driving (Madd), for example, that action is
solely a masculine trait. Nor Anna, the fiercely proactive cancer patient.
What is termed "masculine grieving" is not determined by gender, emphasizes
Doka. Today, women incorporate much of the male passion for activity,
exercise, and immersion in work as a valuable healing process. One widow
searches for meaning by writing a book about her husband. Another, who
says, "You can never heal the hole in your heart," has found some surcease
from the death of her young daughter, an author, by championing her causes.
Women, however, have the added bonus of being able to relate their feelings
with others, to endlessly replay their grief with compassionate, listening
friends. During prolonged grief, their actions, more often than men's, are
directed in a caregiving manner toward the sick person. Women find
catharsis for their grief in helping.
     During a prolonged life-threatening illness, men as well as women
often find some active form of showing their connection and love for the
person. Jan does it with furious exploration of new scientific routes
to prolong or enhance Anna's life. Lockie does it with weekly hilarious
greeting cards, Wayne with crazy phone conversations.
     When men like the Megregians say, "There is nothing we can do," they
are not recognizing the many ways they can help the patient and themselves,
even if they cannot do anything about the illness. While the person is
alive, it is healthy and comforting to honor and acknowledge the attachment
that exists. "When you sit with that person and reminisce about old times
and what you have done together, that is the work of grief," writes Golden.
"When you tell that person how they have affected your life, how they are
important to you, that is the work of grief." Prolonged illness affords a
chance for closure that sudden death can never provide. "Anticipatory grief
is a process that means completing your business," says Golden.
"Heart-to-heart talks are for the living and the dying,
     a time even to settle grievances." Concluding one's business with
another is the cornerstone of grief work whether through action or talking.
*6
     Anna's brother is asked if he would suggest to males that they
heighten the relationship with the sick person during the time that is
available--make every moment count. "Why would you heighten a relationship
if you didn't have it in the first place? It's not like Ro and Anna, who
talk to each other all the time, about everything," says Steve. Jan says,
"Steve shows his affection by action, like surprising Anna with a visit.
He's really a big teddy bear and Anna knows it."
     Steve expresses one form of anticipatory grief, the "what ifs" that go
through his head about the future. "Anna married perfectly. The thing that
worries me the most, if it turns out the way we don't want it to, is those
two kids. They are spectacular--and have no idea how much talent they have.
You never know, if Jan has to finish raising the kids, whether he can
substitute for her personality and all that. Lindsay has got a hell of a
lot of learning yet to do and values to get set in place. And same with
Ellery. Ellery's a mega-sensitive kid." He sounds not unlike Jan's mother,
Phoebe, who expresses concerns. "I just think Nils would be so frightfully
overworked with the kids. And emotionally, I have no idea; I mean, that
frightens me to death, I hate to think about it."
     Steve sees his major role as helping his dad. "I worry about Dad being
able to handle anything that happens, more than anything else. I believe
the rest of the family is strong enough. But Dad will take it so hard. He
doesn't say much, but he is very upset about it. He has said, "I don't want
to live if it is to live through this." He calls Anna the spark plug of the
family because she's got this wild personality-- happy, funny, have a good
time."
     Do you feel you can do anything to help?
     "Yeah, and I'm doing it. Well, just a little. For one thing, I'm
there, okay? Marty's a little too removed and a little too busy, so I don't
think he's in the position to do what I can. If he was, he'd do it." Steve
takes the view that his father should be occupied, not left alone
to reflect. "I keep him busy and talking about other things. If something
did happen to Anna, I think my presence would help a lot. I would get him
on the golf course, get him to the card table, be the force around him that
says life goes on. To try to get him stable and back to normal."
     Although distraction can be helpful, rushing someone to "get back
to normal" is perilous; grieving can take years, subsiding into different
forms as time goes on. No one ever "gets over" a loss, but there can be
healing, which takes time. Many people need to know that there are people
who can help explain ways to work through grief. Among men, conversations
about grieving rituals being "normal" are rare, even though they provide a
comforting structure for healing.
     In today's frenetic society, there are few socially sanctioned rituals
for grieving, for males or females. We are expected back at the job and
to work as efficiently as ever, no matter how distracted and confused we
are--a normal component to early grief. We are expected to get the kids
dressed and off to school rather than stay in bed and succumb to grieving
moments. We are expected to get back to the golf clubs and the card table.
We are expected to find new companions, the sooner the better. Friends look
with impatience at unhappy reminders of grief extended, thinking, "Aren't
you "over that" yet?" With increasing technology, we have moved farther
away from contact with ritual, writes Golden. "It is almost as if we assume
that we can think our way out of everything, that logic and technology can
supply an answer to every problem." *7 Ritual is regarded as superstitious,
foreign, not something to submit to.
     Obviously there is nothing as striking in our modern culture as
ancient mourning customs passed down in different societies. An Ethiopian
couple, living a modern life in Washington, D.c., nonetheless adhere
to Coptic customs of deep mourning--twelve straight days of wrenching and
wailing mourning for both genders, a year in black for the women, a ritual
celebration at the end of the year as the clothing is changed to lighter
garb. "By the end of those twelve days," says the husband, Kyros Hagos,
"you've earned a right to lessen your mourning; it is very hard to hear
those wailing chants, "Why have you left me?"' and so forth, but it is very
cleansing."
     One African tribe recognizes that men have much to learn from women
about grieving. The men stand and view the women who are crying and keening
over a death. They do not taunt the women; rather the females are viewed as
healthier specimens. They closely watch the women in order to bring forth
their own sense of loss and to feel their own emotions. The Bara people of
southern Madagascar, on the other hand, see
     differences between male and female grieving and provide support for
both. They build two different huts when a member of the tribe dies, one
designated the "male house" and the other the "house of tears." Activity is
constant in the "male house" as the men organize rituals, receive
condolences from other men, and take responsibility for burying the body.
The "house of tears" is a private place for women mourners; there they weep
and wail and receive condolences from other females. *8 In some parts of
China, mourners wear armbands of different colors to designate whether the
relative who died was a mother, father, sibling, or child. These armbands
register, even to a stranger, the specifics of their deep mourning and
serve as a guide for offering gentle sympathy. *9
     Saying no to grief, ironically, can prolong grief. If there are few
honored rituals, the answer is to make up one's own. For the religious,
rituals ordained by churches or synagogues or temples concentrate on
mourning. But rituals can be simple and private. Taking a specific time
each day to think about, honor, and mourn the person in the quiet of one's
home can become a ritual of comfort. Looking at pictures in an album is
another way of entering into grief. Such action has a beginning and an end,
thus comforting the griever who desires to put those emotions away after he
or she has experienced them. The son whose father dies and builds a
memorial bench in the woods where he walked, the mother whose son is killed
in an automobile accident and devotes the rest of her life to highway
safety programs are working through their grief. The act of solitary
jogging, accompanied by tears, is a manner of individual, contained
grieving, as is rolling up the windows of the car and sobbing where no one
can hear.
     Although there is no one correct way to grieve, some theorists and
therapists cling to the idea that the only way to get through grieving is
to live through the core of grief, letting out all the stops and
experiencing the necessary emotional effects. Only then, they assert, can
one eventually resolve the loss. Such "letting go," however, can be
elusive--to men, in particular. "Many of us don't know what it is we need
to let go of," says Golden.
     Acculturation plays a major role. "Rugged individualism" epitomized
the male mystique, from the days of the earliest settler to today's Jockoc-
     racy. Frightening displays of machismo and honor, such as duels or
settling injustices with a gun, were prevalent in earlier centuries, but
there were also shared intimate relationships forced upon men and women in
the preindustrial lifestyle of codependent community living. Depending on
each other to bring in the crops or raise the barn or tend to livestock
necessitated common caring. Death came often and with it neighborly coping
with the common grief of infants and wives dying in childbirth. *10 With
industrialization, work became more central to male identity. Long hours in
a steel mill or moving to a new job left little time for neighborly
bonding. Gone was the small community, where everyone was directly involved
in the marriages and birthing and deaths of neighbors.
     A key developmental issue was the manner in which men were taught
to master emotions. Men had to be models of self-restraint for boys, who
could not "control their enthusiasms." Long before John Wayne loped
into view, ruggedness was prized, embodied in Rough Rider Theodore
Roosevelt. It was not known for years that Roosevelt, with his ever-robust
public persona, sank into profound, debilitating depression following the
death of his first wife. His public would have frowned on such a display of
grief. (in modern times, a picture of Israeli soldiers weeping on one
another's shoulders emphasized that manliness can include showing one's
emotions.)
     Homophobia often played a role in fostering the tough-guy image.
Homosexuals were hardly viewed as models for "red-blooded American
boys"--therefore, it became more difficult to acknowledge feelings for
other men. Thus came the "strong silent type" matinee-idol actor--no matter
that their own sexual preferences were sometimes questionable. Homophobia,
unfortunately, remains prevalent and surfaces in torturous cruelty when
AIDS patients, for example, are shunned by male family members,
particularly fathers. Males today carry on the tradition of minimal
emotional expenditure, watching sports together, drinking in bars. The
closest expression of affection is the high five or a hearty slap on the
shoulder. That is why one man, responding to the loss of his stillborn son,
could extol his behavior: "I knew I could hide my feelings very well. I had
learned that and counted it as a strength." It was unthinkable to him that
anyone would "try to draw out someone's feelings unless they wanted
to humiliate him or her." (italics added.) He remained thankful for
     those discreet souls, "for there were times when I was very close
to that fearful state of being out of control of my emotions." (italics
added.) *11
     On the other hand, emotional expressiveness is rewarded, not
repressed, among women, although women, who increasingly enter into careers
governed by male-dominated hierarchies, often feel that they must keep
emotions in check as well. Still, nothing in the female role denies them
the support of others. In fact, the ability to give and accept nurturing is
considered a critical mark of the woman's role.
     "When Anna's mastectomy happened, my impression is that everyone has
so much fear of the unknown," recalls Lockie. "We all think, "What should I
say, how should I react, am I saying the right thing, how do I talk
to her?"' My advice for anyone is "Don't act any other way than you would.
Just be there and don't be afraid of it."" Anna cherishes Lockie for her
reaction to her illness. "You crave that! We have normal conversations, but
if I want to talk about the disease and what it is doing to me, I can. Some
people aren't accepting of that and shy away. It's not easy to listen
to someone deal with it and talk about it. Lockie's always been able
to listen to this straight on. And I know she's always paying attention. It
is not someone going on "Yeah, yeah, blah de blah." She remembers things
that even I don't."
     Lockie says, "It's one thing to talk about illness--I've had enough
problems to know I can do that--but when someone starts talking about "How
are my kids going to grow up without me?"' and "What my funeral plans are
..."" Lockie's eyes tear and she can't finish the sentence. She starts
again. "I remember the first time Anna started saying those things, I
thought, "Well, isn't this a little weird?"' But if she wants to talk about
it, that's fine. I don't exactly know what to say because no one's shared
these thoughts with me before and isn't it terrific that she can? And I
learned from that."
     Anna touches Lockie's arm. "With people who aren't as comfortable with
letting me deal with this illness on that personal a level, I could say the
same thing and they just don't hear it. They shut down. They want to know
that everything's "okay."" Anna's laugh is hollow. Her thoughts echo those
of bereavement counselors; listening--really listening --to a sick or dying
friend is key. One doesn't have to act as if
     one has all the answers. Nor does it help to compare illnesses or spin
off to other topics.
     If a friend acts as if he or she doesn't want company, it is better
to err on the side of persistence. Communicate by E-mail or letters or
phone, but keep communicating. With prolonged illness, despair comes when
patients think they are forgotten. "I called a close friend I hadn't heard
from in six months," says Anna. "She was in my wedding." Anna's openness
has its hazards. When her cancer became worse, Anna remarked to her, "I
don't know that I'm going to be here in a year." Recalls Anna, "After that,
she was scared to call. So I said, "Don't ever feel afraid to pick up the
phone.""
     Denial and avoidance remain strong but injurious forms of dealing with
illness. "I know a lot of people who've dealt with me that way," continues
Anna. "I have to call them. Sometimes they just don't want to invade, don't
want to catch me on a day if I don't feel good. At times you think, "Well,
that's a real cop-out," but if you have a different personality than mine,
you may not think that. I try not to get upset by it. When someone has lost
somebody, look at how people duck them! They just don't know what to do or
say. And they don't know that that's okay. They don't know that they can
walk up and say, "I don't even know what to say," and the person will be
grateful."
     Unlike many who find comfort in the ubiquitous support groups now
available--for widows or AIDS or cancer or many other illnesses or the
grieving--Anna balks at them. "It would be a real search to find a group
that's compatible for me. I rely on my friends when I need to vent; I can't
see sitting around nit-picking every detail. If it's a cancer support
group, I don't know if I would have anything in common except that--and
to me it's got to be more. Having breast cancer and going through all of
this is an aspect of my life --a damn big one. But to make it all-consuming
is a waste of my time. Some of these groups just live and breathe each
other's misery.
     "This one group was in Ken's office--and I just wanted to smack 'em! I
told Suzanne, "Don't you ever schedule me when these people are in again."
They dwell on it. They're living for their [tumor marker] numbers.
Normally, when your numbers go up that's a bad sign. But if a big tumor
dies, say, and all these proteins are released at the same time, your
     numbers can go up too. I want to say, "Calm down." One friend in that
group is terrified of having a bone marrow transplant; she's got stats on
which hospitals have the highest mortality rate. Hey, I don't blame her
--but you get ten people in a room all doing that, it would make me crazy.
Everybody's going to get different facts. I'd be asking, "How did you get
your facts?"' I'd rather find my own."
     Anna says her major role is teaching others to know their cases. "The
more people can understand it, the more they can make their days better.
Those who sit around saying [she whines], "What can you do?"' drive me
crazy. Recently I sat next to two ladies in the waiting room both in their
early seventies, and they were so sweet. I asked one, "What are you
taking?"' and she said, "I don't know," and I asked, "You don't know what
chemo you're on?!" and she said, "Oh, no, I just do what the doctor tells
me." I thought, "These "gods" don't have the time." You catch errors if
you're familiar with your case. I'm never just going to do what I'm told."
Not once in this continuing conversation does Anna use the word "cancer" or
the term "terminal illness," referring only to "it." "I know there are a
lot of people who are afraid of it--and yet, if they try to hide in a box,
they don't know what that's doing to them and everybody around them. To me,
the scariest thing in the world is fear. That drives people in such
negative ways. The more we can learn and take the fear away, the better off
we are."
     Do you find that people who are ill take their cue from you, because
you make it easy for them to talk, or for healthy friends to gripe about
something as trivial as a head cold? "Oh, yes. I've had friends actually
apologize because they forget that I can't quite keep up. I'm glad they
don't need to think about it and can regard me as one of them." Other
patients seek Anna out because of her attitude. "One woman and I had chemo
at the same time and I went bopping in with a movie. She was very depressed
because her cancer recurred after thirteen years. And I had her in
hysterics by the time we were out. And I know people who have felt guilty;
one friend felt she needed to have as bad a breast cancer as I did because
"what happens if Anna goes and I don't?"'"
     Anna pauses and then shifts into a quieter tone. "It's very hard to go
on living. I felt that way when Mom died. I felt terrible that I was going
on and she wasn't. That I would see the sunrise and she wouldn't. And it
     was all about the things that I felt bad about--for me. But I think
that's what this grief business is about--feeling loss and missing someone
in your life. The person who is dead doesn't have a clue. Grieving is a
very selfish act--but it has to be. You're feeling bad for the person who
is dying, but you're feeling sad for yourself. They are going to be in your
life as memory or inspiration or whatever--but the future with the person
has been severed.
     "I've always said that being the patient in a weird way is the
"escapist route."" She exhales a shaky you-won't-understand-that laugh. "It
sounds stupid, but it is." Anna's thoughts echo Thomas Mann, who wrote, "A
man's dying is more the survivor's affair than his own." Says Anna,
"I-don't-have-to-continue-this. When I've been sick in the hospital, I
think, "What do I have to do?"'" Anna does her slightly dopey dog voice.
""I'll just wait for the nurse. I don't have to do anything." Jan has to do
it all. Sure, you're suffering in a different way, in terms of removal from
life. But it's very different than the people who are facing the loss of
this person being out of their lives. I think it's harder."
     Now Anna says fiercely, "In order to help each other, people need
to read and learn about death and dying and long-term illness." Many people
looking at this subject from the outside feel humbled, that they could
never behave the way Anna and others have. Anna is told about one man who
was praised for the brave way he handled his cancer; he stopped the
compliments with a rhetorical question, "What choice do I have?" Anna nods
her head. "We're very adaptable creatures. The kids and I and Jan have
learned to take a day at a time. When I wake up it's a brand-new day. I
don't know if I can get up. I don't know if I can walk to the end of the
room. I don't know if my muscles will work. I don't know if I've got red
cells that day. I don't know what this disease has in store. It's a little
different every day. They have to pretty much take their cue from me as
to what I can accomplish that day. If I say to Lindsay, "I can't drive" and
it's a ballet day, we have to work out other transportation. I can't push
myself."
     It is Sunday, before dawn; the illuminated hands on the clock say five
in the morning. Anna wakes Jan and her children in the darkness. In silent
stupor, they drive through quiet streets to the nearby beach. All is still
     and dark in the houses that nestle on the beach. They stumble down the
driftwood-colored steps and hear hard slapping waves. One huge house,
shuttered and surrounded by palm trees, is barely lit by the moon; the
scene evokes the setting of a tropics novel by Graham Greene. In the far
distance at Cape Canaveral, a vertical light glows. "That has to be the
space rocket," says Jan. An unmanned satellite will soon be launched.
To many, the marvel of space has become routine; no one else watches from
the beach, this launch will not make the papers, but to Anna and her
family, it remains a marvel not to be missed.
     The children shiver, stamp their feet, race around to get warm.
Lindsay is learning the lyrics to the musical Oklahoma and she starts with
"OOOOOOOklahoma," which trails off into giggles. "I'm just a girl who
cain't say no" has better success and the family sings together. The wait
is longer than scheduled. Just as Lindsay races back to the car to see if
there is a launch announcement on the radio, the rocket glows. "Lindsay,
it's taking off!" shouts Anna. They all yell, "Come back!"
     She makes it back to the beach just as a strong glow of fuel seems
to suspend the rocket off the ground for seconds and then it mounts up and
up, arcing into the air, and looks as if it is coming straight toward the
Johannessens. "It's higher up than it looks," says Jan, the scientist.
Ellery asks, "Is it into space yet?" "Not quite." The first separation
leaves a small trail of vapors. Then comes the second. A golden ball
unfurls, splashing across the darkened sky; colors begin to spread, gold,
blue, and at the top left, brilliant red. Behind, the trail is a distinct
white arc. Everyone oohs and aahs, especially Anna. "It's magical!" she
shouts, using her favorite word for things or people she feels are
extraordinary. Everyone talks at once about what they can see in the
unusual remains of the second separation--a duck, some strange animal
with a tutu, a racing dog--the magic of it spreading and changing minute
by minute. As it opens further, the center takes the shape of a billowing
skirt, then drifts outward with a hole in the center. Scientific
explanations are forgotten, even by Jan, in the glory of a unique moment
and a cloud unlike any they have seen.
     As it fades and the sun begins its competing glow, Ellery and Lindsay
play tag, racing and giggling, coming too close to Anna. "This is an
out-of-bounds zone," she warns. The next time, she says forcefully, "Don't
     play that close! I don't want you bumping into me so that I take a
tumble." They calm down and soon the four of them walk arm in arm down the
beach. Ellery is especially protective and solicitous, giving her hugs. The
horizon glows in the dawning of a new morning. As they walk back up to the
car, Anna and Jan give each other a special hug.
     "Just think, Nils!" says Anna, as he touches her face with a kiss and
she tucks this cherished morning away in her memory. "That rocket's
probably halfway round the world by now."
     CHAPTER TEN
     Riding the Roller Coaster
     Anna returns from Florida rested and a bit energized by the shots that
had boosted her red and white cells. Now she and Jan are experiencing
anxiety again; it is time to get the results of her chemo treatments.
Conquering fear through knowledge, an Anna axiom, is not always possible.
"When I have to wait for results, I go crazy. I hear what Ken says, but I
can't make a decision quick enough, I can't help participate in the next
step. I need to think about it by myself, absorb it, before I can do
anything."
     A few days later, Anna has an MRI to determine whether the tumors have
responded, standard practice after two cycles. She wonders and worries
for a week, until the reports are back. Anna sits down as Miller reads her
results from the report issued to him by the radiologist. Based on their
comparison to Anna's "most recent MRI in July," he says, Miller recommends
that Anna stay on the treatment. Anna sits there thinking, This has to be a
slip of the tongue. This can't be happening to me! Her last MRI had not
been in July of 1995, but October--just before Anna started her two-month
chemo treatment in November. Anna looks at the report. "They did screw up!"
She exclaims later, "The radiologist, who gets around fifteen hundred
dollars for this procedure and analysis, compared my current MRI to the
wrong set of films. And Ken made a decision to continue his treatment from
the wrong files!" Anna angrily alerted Miller's office of the misreading.
"The upshot of this reevaluation," says Anna, "is that Ken reassessed my
treatment and completely changed his mind, halting the Mitomycin. So I am
now on this brand-new drug that Ken found-- it's called Arimidex--which
     shuts off the production of estrogen right at the adrenal gland
faucet!"
     Despite the error, Anna empathizes with Miller, "who is so
overloaded." Does that bother you? "He's no different than anyone else.
That's the scary part. There's been such an explosion of cancer. It's the
same, I'm sure, for doctors who treat AIDS patients --they barely have
time." Jan thinks that the genesis of the mixed-up report was probably a
clerical error, a clerk for the radiologist pulling the wrong file. It took
Anna, the vigilant patient, to notice. For the next thirty days, Anna will
be free of chemo, taking only the Arimidex pill. "From what I've read--Jan
pulled three abstracts from the science Internet --it seems like this is
going to be a cakewalk. A good thirty percent of the women in one large
study had absolute stability for twelve months." After one month of
treatment, Anna will be checked and possibly go back on chemo. "So isn't
that nuts? Had I not said, "Hello-oh," they would have not taken this
adventurous treatment, which I'm all for."
     Miller understands his patients' emotional need for quick results.
"It's hard to live waiting for results. Very hard. It's possible that I may
have spoken with Anna about the written report without having looked at the
films myself because I was trying to answer her needs." Anna holds no
grudge; Ken had in fact previously mentioned that Arimidex would probably
be the next course of action. It would just have taken a little longer.
"Human error is acceptable and undeniable. But when I found the error,
that's what makes Ken such a good doctor. I am so happy that he is not one
of the many arrogant M.d.'s who does not listen to his patients and does
not allow himself to change his mind because he thinks he is never wrong in
the first place. He was right on with Arimidex. It couldn't have been on
the market for more than two weeks. My pharmacy had never heard of it and
had to call the manufacturer. So I'm very, very happy that Ken stays on top
of it pretty well. Plus his connections with Johns Hopkins and NIH
[National Institutes of Health] help."
     Now Anna is concentrating on another chemo holiday. "I think I'm going
to have the best thirty days of my life. I get to grow more hair. And it's
just going to be a fun time." She does not look ahead to the possibility of
more debilitating chemo treatments. Her current half-joking comment is "As
long as I can have hair in the winter and go bald later, I'll be fine. It's
great to have hair around your neck when it's freezing outside."
     As each February day dawns colder and grayer than the last, Anna sinks
into worries and depression, exhausted from neuropathy pain and hot flashes
that remain months after stopping Taxol and tamoxifen. Now Anna takes a
white pill each night at dinner--Arimidex, the hormone blocker--and has had
no side effects. It is too soon for an MRI to see if the tumors have
decreased. The pain from nerve damage seems unending. "God, when is it ever
going to stop? This is enough! Going down steps is really scary, because I
don't feel my feet landing, all I know about having hit the stair is that
my knees jerk. And my back is spasmed lately. Jan massages me at night."
     One night, Anna tells Jan that she is "so depressed by all of this. In
one sense I am grateful for these drugs, which are fighting a disease
to keep me alive, but it's taking my life in a different way. One day, you
stop and look in the mirror and say, "Who in the hell are you?"' I feel
sorry for Jan and I told him, "It's not fair. You're now married to a
different person. The person you married is stuck in a body that doesn't
work the way it used to." And then I said, "Maybe I'm addicted to the
Percocet, maybe I'm actually fine." Jan looked at me like I had three eyes.
He said that it was stupid to think that was the problem. Still, I said,
"I'm not taking any painkillers today because I don't want to be addicted
to Percocet." So I don't take it until I'm in so much pain that I'm curled
up in a ball. It's totally stupid, I know. What it's come down to is a
battle for control--"Dammit, I'm going to make that decision." Really
pathetic, but that's what I do."
     Still, nothing is so bad as Anna's lowest ebb in May and June of 1995,
when the double dose of Taxol caused searing pain. "I thought, "Dying has
to be easier than this. If you die, you're not going to feel this bad
anymore. You will feel nothing." One night I woke up screaming, thinking I
was being burned alive! It takes a lot to have pain interfere with my life,
but I was suffering more from the treatment than the cancer.
     "No, I never considered suicide. I just felt dying would be easier.
I've actually thought, "Wouldn't it be chic to think of suicide?"' You meet
a lot of intense people who've thought about it, so I said maybe I should
be thinking about suicide, but it's just not my personality. The only time
I can think of it is in terms of the Kevorkian effect. If I get to the
point where
     I am so sick, I hope the old morphine comes out and I'm overdosed. I
don't want to lay around and be a vegetable and just drag on and on. I
would much prefer "Give that girl the overdose" and let me go on my way."
     It has been coldly cruel, the winter of discontent for everybody who
lives in or around the nation's capital. Anna notices that Jan is also
depressed and frustrated at work. Talk switches to the natural depression
that cold weather and sunlight deprivation can cause. "I have a friend who
does not acknowledge the month of February at all," says Anna, laughing.
"He goes into January thirty-second, January forty-seventh and
forty-eighth, to the first of March. There just is no February."
     Have you thought about light treatment? "I had a girlfriend who had
the bulbs replaced in her office with that kind of lighting, but, no.
Actually," she says, "I've thought of just taking a vacation by myself,
to get somewhere warm and sunny. But I figure we need to keep each other
bolstered up; Jan needs me now." Anna sighs. Her losses are so abiding. "I
get up, help clean around the house a little, dust furniture, the easiest
job I could find so I wouldn't get tired. I went out Saturday afternoon
with two girlfriends to have lunch. That's all I did. I was so exhausted
from pain, I had to take a two-hour nap to be able to go to the Ice Capades
with Lindsay. Walking up and down those arena steps just about killed me.
Thank God I had handicapped parking."
     Do you need a Dottie person for yourself? Brushing off the question,
Anna says, "I really don't think I need to yet." She is eking out the days
until a Mexico vacation with Jan, planned for April. "We can talk then. I
tell him everything, so it's not as though it's all bottled up inside. I
think that what I'm going through is real normal and when the weather gets
nice again and I'm out there planting bulbs and growing my vegetables and
all that, it'll go away." It doesn't occur to her that Jan might need a
rest from her problems, nor has Jan made a move to find counseling. "I know
I agreed with Dottie when she suggested it for us ... but I'm not there
yet."
     Toward the end of February, Anna sits down to write about "Who I am,
how I feel, and why." Putting one's feelings on paper is a commonly
recommended therapy, but Anna does it with extraordinarily reflective
wisdom. "Often I am so busy doing and forging along, that I recognize the
     need to stop and reflect on my feelings, and it helps to write them
down. Managing my cancer is quite time-consuming, so there has not been
much time to articulate how I feel. I am usually too busy fighting this
report or questioning that doctor or reading about treatment options, or
dealing with family and the kids. I am not good at reading self-help books
nor, as you know, do I feel compelled to join a support group and spend
endless hours talking about the disease. It's a waste of my time.
     "First the negative, what I call "let's be gloomy and feel sorry for
ourselves." So, how do I feel about cancer? I was quite shocked when it
returned in '94." Anna returns to her basic theme--the more she knows about
her disease, the less her panic. The more control she has over treatment,
"the easier I can cope with knowing I will die of this disease. Fighting my
cancer daily on a physical and mental level helps to keep me alive. Yet I
know that this disease is taking me away piece by piece, and I am filled
with hatred over the vile, contemptible way that this cancer has opted
to claim my life.
     "I had always wished that when I died, it would be sudden and painless
because I dreaded losing myself, my dignity, my very essence, to something
so slowly consuming. Imagine being strapped down and eaten alive by some
small tiny bugs that crawl all over you. In a way, that's cancer. Something
is eating me up inside and I cannot stop it, I cannot kill it, and it is
maniacally consuming me one piece at a time. And I do feel it! Not only do
I feel the pain from the nerve damage left by the Taxol, but I feel the
pain from the liver tumors, from the rib, from the small bump on my chest.
I feel it every day and it is a constant reminder that cancer is so fucking
cruel that it tears at my soul. We are a civilized society and I hate
to see that anyone should have to suffer chronically, much less me! I
search for the reason why, intellectually. What is the purpose to all of
this?
     "My girlfriend Nancy Bauer sent me Viktor Frankl's Man's Search for
Meaning. He articulates certain things that I have accidentally encountered
and realized about suffering, pain, and death; how we suffer is one way we
give meaning to our lives." Anna adds wryly, "I find this true but quite
bothersome--I would rather find other ways to obtain meaning that aren't so
morosely productive. I am a happy soul by nature and dwelling simply on
suffering gets on my nerves! So hence my search continues."
     Two months later, Anna's search for meaning takes on a more sanguine
note. "Sorrows, death, and dying are necessary dimensions to living. Grief
and loss are such critical dimensions that require more individual,
private, personal attention than we've given it, but look how it has been
sensationalized out of all meaning in America! Here's today, the
anniversary of the Oklahoma bombing, and they're beating us over the head
with it all day on television. It takes away the personalness of the
incident--they've taken a human tragedy and made it a circus." With feigned
pathos, TV commentators position themselves among the genuinely tearful
survivors for their broadcasts. "Out of that tragedy there may be some act
that will profoundly affect people's lives in a meaningful way. But it's
not going to come from those tacky newscasters."
     Anna says she can't imagine a life without turmoil or sorrow or
tragedy.
     "What would people know about really appreciating what they have
without it?" She speaks of her friend Jane Bittner, whose son was killed
four years ago in a motorcycle accident. Sometimes when Bittner talks about
the accident, raw tears still come, but Anna feels her friend has grown
through her tragedy. "She now sees the world very differently and
appreciates so much more what she sees. This is the first brand-new ballet
she's choreographed in years and I'm feeling like she's a new bird
spreading her wings and part of what's happening is that Carl's right there
with her in her head. I don't know that she thought of him every single day
when he was alive, because, with all of us, the kids are just there. You
take your life so for granted before something bad happens. Jane puts a
smile on her face and she's amazing. I'm not saying there's a good side,
but she's found strength and beauty from her loss and made wonderful things
from it. I think everybody's capable of that in time, if they can get out
of themselves a bit.
     "Anyway, Jane and I were sitting together the other day and we talked
about how we were not afraid to die. She's had to live with one of the
worst things in life, her child dying. I think there's a natural order
to life, but I don't believe that there's a "religious rule book."
Everybody says, "Well, do you believe in this and do you believe in that?"'
And I just say, "Well, I don't have a rule book." Somehow there's just a
natural order to the universe and I'm just a piece of that order and that's
fine. As I die,
     something else will be born and on goes creation. I feel worse for the
people left who have to grieve for me."
     When Anna was writing in February of 1996, her anger was not about
dying, but about the form it was taking. "As happy as I am to be alive and
set an example to my children and friends about boldly facing this disease
and continuing on with my life, I hate the fact that I will have to die a
slow death. I hate it for my family, who will have to endure such long-term
suffering. I, at least, will see an end to it, but they will suffer even
longer. The sense of responsibility that I am the cause of this pain is
depressing." She repeats her helpless anger about treatment for cancer
being such a crapshoot.
     "So, there is my anger. Anger at the disease, at the medical
community, anger that I probably won't see and participate in important
moments of my kids' lives, anger that my entire family will have to suffer
and probably suffers each day right now as they gaze at me. Suffering and
joy are intermingled. We're happy I am here, but we suffer the terrors
of the unknown of how much time we have together. At this point, my kids do
not know for sure that my disease is terminal. They keep thinking that I
can be cured. I have had to make a solid choice about when will be the
right time for them to know the entire truth. I refuse to tell them
something like this when, in fact, I could still live on for years. Why
make them more sad and more miserable?"
     Anna leaps to another thought. "Then too, there is plain old
embarrassment. Did you ever feel like you overstayed your welcome? This is
another reason for wishing for a fast death. I guess I'll just call myself
a clinging vine. One feels like an albatross. Everyone could get on with
their lives and not worry about me if I just died out now. Having cancer is
as much about the people around you, those you love, as it is about you,
the patient, dealing with it. On an optimistic note, if you asked my family
which they would prefer, keeping me around would be their choice. The
patient feels he or she is causing a burden, but the love my family feels
makes caring for me a joy as much as it is a task. How does one separate
the two? Can't be done."
     Anna fears for something she could never become. "Another odd feeling
that my change has brought is that I am becoming a boring person. When I
was working and interacting more with others, I felt useful,
     knowledgeable, and a part of life. Self-doubt was nonexistent when it
came to feeling whether I had anything worthwhile to contribute to a
conversation. That has changed since this recurrence--because I am not
working now and my exposure to adults is limited because I physically do
not have the stamina. I now feel stupid--yep, that's it, plain and
simple--I feel stupid. I fear going to dinner parties because I am quite
convinced that I will have nothing of interest to add to the conversation,
unless it is to talk about the latest events regarding my disease. I even
believe that I am deadly dull to my husband. I know that this is untrue on
an intellectual plane. I had a girlfriend who went through exactly the same
situation. As a homemaker, she became convinced that she was a
noncontributing member of society, could not socially carry on, and finally
went back to work. However, I never viewed her in that negative fashion. It
is this remembrance of her feelings versus reality that keeps me from going
off the deep end."
     Her writing sounds so much like Anna talks that one can almost hear
Anna taking a breath, and then going on, as she writes, "So, are we
depressed yet? That is a very quirky aspect to me." Anna repeats her
inability to remain depressed--"regardless of how much I hurt--the latest
bad cancer news, the weather, a friend dying. I have my odd day of sobbing,
curled up in bed feeling sorry for myself, but then something just happens.
I make plans for something fun to occur. I create more goals and volunteer
for something that will be a challenge and VOIL@A, depression is gone. I
don't get caught up in the quagmire of my own martyrdom.
     "Now on the positive side. If anyone can lick this disease by sheer
willpower, I can. I love my life. I have too much to do yet, although I am
in a holding pattern while focusing my energies on staying healthy and
fighting this bloody disease. I want to grow old with Nils and retire on a
perfect sunny island. I want to see my grandchildren and laugh at my kids
when they start dealing with the issues that are forever circular. I want
to help my children through the trials of teenage life and have long
conversations with them over the merest trivia or world issues. I want
to write again, and maybe direct a show again, and maybe work again! There
are too many places I have yet to explore, so damn it, cancer, just go
somewhere else!
     "I have had a very meaningful and wonderful life, providing joy and
laughter to my family and friends. Although I am not religious at all, I
have treated others with respect and care. I feel very much loved by a
large number of friends whose lives I have touched. My greatest joys come
from hard work and having fun with other people--doing things for people
that make them smile and ease their burdens."
     Anna changes gears and turns to decision making during prolonged
illness. "When I realized the cancer was back, I made the decision to get
my personal affairs organized. I do not believe that it would be
considerate to leave all my final wishes and arrangements to Nils. The poor
man will have enough on his plate. So, I called the funeral home and got a
price list so that Jan can follow my wishes and I will have it all written
out. I wrote up a telephone tree for him too. This will eliminate his need
to be on the phone to pass on the news because others can take that list
and do the phoning. I will write my own obituary too--this way the facts
will be right. My will and his are sort of up to date and as written are
okay. I am having the car transferred into his name once I really get sick.
These little things will make life easier on him. [Wrestling with the
bureaucracy over changing credit cards, titles to cars or property, is not
only overwhelming at the time of the death of a loved one, but a constant
jarring reminder every time one has to write "deceased" on a piece of paper
or supply a death certificate.]
     "It is unconscionable for a perfectly capable person who endures a
long-term illness to leave these chores undone," explodes Anna. "It is
selfish and truly cruel to leave it all to the relatives, who must cope
with the pain, the loss and grieving. And again it allows me a sense of
control which provides me that feeling of mental peace."
     A month later, in March, although Anna's physical strength has
improved and she is continuing with Arimidex, death is on her mind. "It has
been a week of funerals," she explains. The Sunday before, March 10, Anna
and Jan were waiting at the St. Francis Bereavement Center while Lindsay
and Ellery had their session with Dottie Ward-Wimmer. Anna checked their
home phone answering service for messages and heard a friend's voice
telling them that Lockie's father had died. "He was getting to the stage
where he was going to have to go to a nursing home. It was
     a blessing for them all, including his wife, Alice, who is very
religious," says Anna. She is so close to Anna that Anna is the second
listing in her prayer book, after Lockie and her now deceased husband.
Lockie drove from her parents' home in Danville, Virginia,
to Charlottesville to tell her brother in person; his wife, a heavy smoker,
was dying of throat cancer and Lockie didn't want to break it to him on the
phone. That same week, Lockie's brother watched his wife, Nan, die.
     Lockie told Anna and other friends not to come for her father's
funeral. "I'll just be so busy and I won't have time to spend with you."
Anna replied, "I'm coming. And you'll be glad I did." Anna refused to take
Lockie's request seriously because Anna had her own memories. "When Mom
died, I had no friends there, it was all family, and sometimes friends are
as close, if not closer, than family." Anna reiterates to others what
counselors feel; good friends should err on the side of persistent caring,
rather than take grieving friends at their word.
     The "Richmond contingent" went to the funeral. When Wayne saw them, he
said, "What is it about you women? Is this The Big Chill [referring to the
1980's movie about boomers bonding at a funeral]?" "Yes," Anna replied.
"Hey, she needs us and we're here."
     And Anna was correct. "When she saw us, Lockie, who just doesn't cry
around others, burst into tears. Just the hug around the shoulder was
important. Lockie was able to laugh and reminisce. Her family is very
formal southern, an old Virginia blood family. Lockie never felt that
unconditional love outwardly and her friends gave it to her. She was very
touched." Once again, Anna uses the funeral to offer a lesson on life
to her children. "Lindsay was there when I walked in crying. They knew I
was going to Danville for Lockie's dad's funeral. I told them how important
it was for Lockie and that this is what friendship is all about."
     Anna's caring is deepened by her own feelings of loss, a sensitivity
that the seriously ill often develop. She also purposefully spent time with
Lockie's mother and the brother who had lost his wife. "He had had the time
and had reached a sense of acceptance. He was very pleased with the hospice
people who cared for his wife and told me that he would never have traded
these times with Nan, that the illness had made them closer. I was able
to tell him about Frankl's book. He hadn't read it in twenty years and was
going to reread it. I also could help Lockie
     about the legal aspects--multiple copies of the death certificate and
so forth. And I sang all five choruses of "Amazing Grace." First time I've
ever done that for anybody."
     Back home, exhausted both mentally and physically, Anna falls into bed
but can't sleep. It is another evening of conversation in bed with Jan.
Anna wonders how many more deaths she will witness now that she is getting
to an age when friends have parents who are dying. For those living with
life-threatening illness, funerals are always reminders of their own
sickness. She tells Jan about how she and Nan had sat together a year ago,
"talking about how we were both going to lick this thing. We were both so
positive. I am sad she's not here--but I'm feeling so damn good right now.
I feel like I've cured this thing." She laughs. "Then I start to think, "If
I'm feeling this great, is the cancer feeling this good too?"' I used
to tell myself when I was feeling so rotten that somehow my system was
working away at those damn tumors."
     So Anna, six weeks off chemo, is now worried about feeling good. "I
just don't trust Arimidex. It's treating only a part of the cancer. With
chemo, you know something is dying." Anna wants something to kill the
cancer tumors, period, not just halt them at the current stage. "I don't
want to waste time by not taking chemo." Once again, Anna rides the roller
coaster; panic takes over as she waits for her checkup next week to see
what's happened with Arimidex.
     On a positive note, Anna says that Lindsay and Ellery can't wait for
their sessions with Dottie. "I don't hear the clay wall being slammed on so
much. It's a great release for anger, but now she has gone on to other
activities. I think they need that. But last night, Ellery was upstairs and
I heard that clay wall thump-thump, so he must have been really working
stuff out. I'm reading and laughing to myself--"Wow! I've got to throw a
couple." The stairs are a hard climb for me, but I went up and threw a
couple of times for fun. I was amazed I still could throw and I could
actually hit what I targeted. It's a neat wall. The whole place is. I said
to the kids, "Think of all these children who are coming here--instead of
throwing toys away, you can donate things for all these little kids.""
     Ellery and Lindsay see their counselor separately--"They have
different issues that have come up over the school year," says their mom.
Anna likes that because one of them stays downstairs to keep her com-
     pany. "We have a good time goofing around, sampling the various hot
chocolates and other goodies that are in the front hall." Neither Jan nor
Anna has ever probed what the children do or discuss with Dottie and there
are few gleanings from their conversations.
     On the way into the center from Olney that day, Ellery asks his mother
incessant, curious questions. "Do you believe in heaven?" "What happens
when you die?" "Are you afraid to die?" "How long will my grandfathers
live?" and finally, "Mom, how long do you think you will live?" Anna
answers, "I don't know." Ellery says, "I talked to Missy [a friend who is
Jewish] and she said that in her religion they believe that when you die,
the soul gets released and then it gets to go somewhere. So what does that
really mean, Mom?" Answer: "Hey, I don't know. Where does it get released
to? Good question."
     From Ellery's conversation with Anna after his session, she knows that
a relaxed Ellery has asked Dottie similar questions. "She didn't try
to answer the unknowable and took an ambivalent course so that he could
help make up his own mind," says Anna. "I think that's neat. And she told
him she hoped I would be around a long time. So it's really interesting and
they have someplace to talk and think."
     That night as the children get ready for bed, Anna turns to Jan and
says, ""You're going next time. You cannot not be a part of this--too much
is going on. Too many interesting things, too many questions are coming out
of Ellery's mouth, and I don't want this experience just to be associated
with me. That's not right. You have to be there because this is going
to eventually be a family thing."" Anna speaks so fervently to him that Jan
agrees quickly. Anna recalls, "When I told him all these things that came
out of Ellery's mouth, he realized he was missing the boat."
     Anna treasures the conversation she overheard that afternoon, driving
Lindsay and Ellery home. They were talking about playing with the sandbox.
Lindsay had drawn a big heart in the center. "Where are you?" Dottie had
asked. "In the center of the heart," Lindsay replied. Dottie asked,
"Where's your mom?"
     "My mom is the heart."
     Anna finds solace in such moments. Little does she know that in a few
weeks, she will be savoring many more.
     CHAPTER ELEVEN
     Reprieve
     Anna sits in the doctor's office with her mouth agape. She has trouble
absorbing the news on this April day. Then, with mouth still wide open, a
grin starts to spread. Her tumors have shrunk dramatically--eight, many of
them large, have vanished and only two remain. As she walks out, a numbed
Anna says, "I guess I'm in remission!" A few weeks later, Anna bubbles
away. "I feel like a whole different person. Now I can deal with the pain
to a degree because I stay busy and divert myself. I didn't have the energy
to do that before. So far, Arimidex has no side effects. If there were,
it's worth it for the benefit I'm getting from the drug. For me, the
benefits are tremendous."
     For the first time in weeks, Anna shows up for ballet, cueing recorded
music as Lindsay and four others swoop out as fireflies, then laughing as
they leap and wings pop and molt onto the floor. Anna jokes, "Got to fix
those firefly butts." She plants bulbs and seeds and tomatoes, even plays
softball with the community team, hitting solidly while someone runs for
her. She delights in walking the dogs, no task for sissies. "Being able
to walk the dogs for an hour this morning and feel good about it!" she
marvels, as if she has just won the lottery. "I won't poop out till eight
or nine tonight."
     Despite her joy, Anna is bombarded by yet another emotion. She is
plagued by feeling like "the guest who won't go away." During this "stay of
execution," Anna jokes, "What did the dying person say to the doctor when
she learned she was getting better? "Oh, hell. I've just ruined the makings
of a really good funeral party!" Well, that is my condition now. I was
prepared to die and no one knows what's happening now.
     The price for remission is uncertainty every day. When I knew I was
fighting death, I was able to make the most of each day because in the back
of my mind, this was it. But now I am lazy and actually more depressed at
times because what I am fighting is not clear anymore. How do I keep
fighting when I am winning?! What horrible thing could I do to accidentally
change it? I so desperately want to be normal again!
     "I don't have any answers! Jan tries to reassure me to just enjoy
myself, be a mom to the kids and hang loose. He is right--but it doesn't
stop me from wondering and fearing." Anna is told that there is even a name
for what she is going through--Lazarus syndrome, as in rising from the
dead. "Well, it's nice to know you're not original," she says dryly, "but
it's interesting to find out there is a pattern." As described by Dr.
Stephen P. Hersh, when a person has a life-threatening illness, the patient
and family accommodate to the decline. "Then, unexpectedly, the ill
person's health improves. ... Experiences like these are emotionally
wrenching, especially for family members. All are challenged by the sudden
need to shift expectations." Patients have guilt for the burden they
perceive they have become and families have guilt because they have
indulged in secret thoughts that it is, indeed, time to go. *1
     "There's a tension, an anxiety, that being ill puts on everyone around
you," says Anna. "No matter what I say or do, I can't stop my friends from
worrying or wanting to do things for me. At times, I say, "Stop, it's
enough." Now I worry that they're going to want to do more to keep me
better. I'm constantly on the receiving end and can't give back.
     "I know it's all in my mind, but you feel like you're letting people
down in a different way," says Anna. "When you're told that someone is very
ill, you think about your life without that person and the difficulties
ahead. Everybody's doing that with me and all of a sudden it seems like I'm
better. And they're thinking, "Is this some kind of a bad joke? Are you
going to get better and then, boom, get worse?"' It's almost even a bigger
piece of gloom hanging over them.
     "This respite is very, very nice but can be confusing. I'm sure the
shoe is out there. How big it is, when it'll drop, I don't know." Anna's
optimism returns. "I'm going to get some very good months out of this. A
year ago, Arimidex wasn't available. That's what's so neat. Maybe something
else new will come along that even will be better."
     Anna faces a new challenge. "It's odd, but I don't think I am any good
at prioritizing all of this "free time." There's a part of me, the person I
was before I got sick, that's resurfacing--"You should get a job again, you
should contribute, this is living!" The other part of me says, "No, no, no!
Even more than when you were sick, enjoy this day, because it may be taken
away from you tomorrow." And Jan helps me to stop and say, "Don't go get a
job. Keep doing all the special things you wanted to do when you thought
that was the last you'd ever see of that.""
     Jan's hopes soar. "He's doing a lot of "Oh, boy, she's in good shape;
let's take advantage of it." We're trying to get to Canada and the Outer
Banks this summer, and Jan's considering a science meeting in San Francisco
in the fall." Anna adds, "I look at all the slack Jan took up and I feel
terrible. More than ever, the kitchen is a foreign place." She laughs. "I
don't speak the language--I can't communicate with that room."
     This new lease on life, has it made you able to say, "Que ser@a,
ser@a"?
     "Oh, absolutely! If I got hit by a truck today, hey, I wasn't supposed
to be here, this has all been a gift. Plus, if I get hit, there's a folder
and Jan can say, "Okay, here's the funeral, here's why I need this many
death certificates, here's her insurance policy." He will be able to sort
through things in a heartbeat." At her most optimistic, Anna reveals why
she can so breezily make end-of-life plans. "This can all be real--but part
of me thinks it never will happen, the part that says, "Hey, I'm gonna lick
this sucker.""
     On May 3, Anna and Jan drive to Johns Hopkins in Baltimore to see
Nancy Davidson, the oncologist who had shown them the disastrous "sausages
in my liver" X rays seventeen months ago. Anna seeks a magic bullet as she
asks Davidson if there is anything else she can do. Davidson greets Jan and
Anna pleasantly but is not effusive. Slim and tall, Davidson wears minimal
makeup, a white T-shirt, red jacket, navy skirt and tights, and blue flats.
They sit in a small room, knees almost touching.
     Anna's X rays are slapped up on the light box on the wall. "See all of
these guys have disappeared," says Anna, glowing. "Since Arimidex, I have
just two little guys." Davidson and Anna discuss medications. Anna tells
Davidson that she takes sleeping pills nightly. Never an insomniac before
her cancer recurred, Anna thinks that one of the reasons is "I feel I have
to be awake--I don't want to miss a minute of my
     life." Such a reaction depends on the individual; for some, tension,
exhaustion, pain, and depression causes sluggishness and withdrawal.
     Anna asks the doctor, "The big question is, What do I do now?"
     "Okay," she replies. Behind a curtain, Davidson palpates Anna's
stomach, pushing down around the liver. Then they are back sitting with
Jan. "Well, I wouldn't change a thing," Davidson says. "You look very good,
you're feeling well, you're not having any side effects."
     Anna asks why hormone-blocking medication-- without chemotherapy--is
working. "All of a sudden, we've gone whomp with hormones only, and even
the bones have cleaned up, so we're definitely somewhat confused."
     "Hormone-dependent or comindependent cancers, both are going
to respond to chemotherapy," explains Davidson. "But hormone-dependent
cancers are more likely to respond to hormones. I'd stay with the
Arimidex."
     Davidson quietly inserts a reality check; they will dot her
conversation. "In all the times we've talked, we've talked about the fact
that we're not going to cure this illness, right? And that the goal of our
therapy just is to let you and the breast cancer live in harmony with each
other--and at this point, you seem to be very harmonious." Anna voices
concerns about Arimidex not lasting longer than nine to twelve months in
clinical trials. Davidson says, "The natural history of metastatic breast
cancer is that it's intrinsically resistant; it may get better for a while,
but cancer cells are smart and they've learned how to get around it. So
they start growing again. Arimidex is very useful and has a niche, but it's
not going to be any more or less effective than other kinds of hormones
that are available."
     Anna twice returns to her sister's theme, voicing doubts about not
having had an adrenalectomy. Davidson demurs, reiterating Dr. Miller's
argument that chemicals are just as effective. "What about the bone marrow
transplant?" ask Anna and Jan. "No," Davidson responds flatly, noting that
Anna's cancer has not been adequately responsive to chemotherapy, a major
component of bone marrow transplants. "With a transplant, anything could
happen. I was never really enthusiastic about that for you.
     "When Arimidex stops working," Davidson says, "there are other hormone
blockers and chemotherapies to try. That's the time to go into
     your information-gathering mode again--call me or yack with those guys
at the NCI and Georgetown and see if there's anything that interests you
that's available then. One thing about investigational therapy, as you know
well, is that they come and go and only a few pan out." Davidson cautions
Anna to stay with these three "really good breast institutions" at hand
rather than seek distant cancer centers. "There isn't one area so
incredibly promising that you would want to do that. We would all know
about it immediately. It's an information society and we would all be doing
it because we're not anxious to mess around with ideas if somebody else has
a better mousetrap."
     "Well, I'm definitely on my information-seeking track," says Anna,
"but I agree with staying on the Arimidex and riding it out. At least I
will have gotten extra months."
     Anna leaves, fiercely punching an elevator button. "Well, it's nice
to know I'm still gonna die." Still, Davidson's negative assessments do not
bother her. "She has a very logical, earnest manner. I get irritated with
people who've seen her and come out devastated because they think she was
cold. That woman is not cold. But she's very scientific, which is good
because I don't need to be patted on the back. I want to hear the truth."
Anna is a doctor's dream in that regard, no matter how emotionally
difficult her questions may be to answer. Many patients avoid the truth as
long as possible.
     On the drive home, Anna still obsesses about the adrenalectomy. "I'm a
victim of time. Seven years ago, tamoxifen had just come out; it was
working but wasn't time tested. None of this stuff has been out long enough
to know its long-term efficiency versus the adrenalectomy. Had we done that
maybe seven years ago, who knows? God, I hope Ro doesn't beat herself silly
someday going, "Dammit, she should have done this," because it may not have
made a difference, you know?" Jan lets Anna ruminate on an issue so hard
to put to rest. Many months later, Jan admits that for both of them, "the
doubt always remained. I can tell you it was never resolved."
     Anna digs for reassuring nuggets. "Nancy kinda said, "Keep on going
until they come up with something new." Who knows, I might hit the jackpot.
But again it's very patient proactive! I'll have to circle like the hawk
to find something we think is right and then ask about it." Jan tries to
reas-
     sure her, repeating Davidson's comment that any extremely effective
treatment would be picked up instantly everywhere. "You still have
to monitor the situation," says Anna, adding lightly, "They're not going
to keep a little note that says "Call Anna."" Jan smiles. Anna shrugs. "So,
what the hell. This is just a reprieve--but we'll take it. That's fine with
me."
     On June 1, 1996, Anna trots off to the wedding of her former Happy
Feet partner, Connie Giordano. A year earlier, while Anna was still on the
debilitating Taxol, Giordano told her, "I have a big favor to ask--I want
you to be my matron of honor." Anna started crying. "To see Anna cry is
very unusual," recalls Giordano. Anna said to her, "You've given me another
goal to shoot for." It cannot be stressed too much that the best friends
are those who treat the sick naturally, to "give them another goal to shoot
for," even the simplest venture or moment that can be shared. At the time,
Jan felt it was problematic that Anna would make it, but said nothing.
     Shortly before the ceremony, Anna excitedly called Giordano. "I've
found a pair of shoes!" she fairly shouted. "I'm getting feeling back in my
feet and I'm gonna dance at your wedding." Says Giordano later, "And I mean
she danced. She had a great time."
     In mid-June, Anna meets a friend for lunch at The Cheesecake Factory.
She looks fresh in a white T-shirt under a long, sleeveless denim summer
dress. She wears earrings and, for the first time in months, a trace of
lipstick. Her thick hair needs shaping, but Anna cannot bear to cut an
inch. Anna sips a concoction of Chambord and juices and explodes with her
latest project, producing pictures of her Richmond house surrounded
by greenery. To the uninitiated, it looks like bushes, huge, yes, but
benign. "That's weeds! Those people let the whole yard go to pot." Anna and
Jan are suing the tenants they evicted for nonpayment of rent and for
damages to their home. (when the trial date is postponed until October,
Anna says, "Great. I want her to have to take off from work, not now when
she has time off." Revenge, a seemingly unknown quantity in Anna, sounds
justifiable as she ticks off their weeks of consuming work. Eventually the
Johannessens were successful in receiving back rent and collecting on some
of the damage and sold the house within days.)
     "I've been down there cleaning up the place to get it ready to sell.
There's crayon all over the walls, floors are a mess, we're going to have
to paint, inside and out. It's so bad that it looks like most of the summer
I'll be commuting to Richmond." Anna is not complaining; rather, she seems
ecstatic that she is well enough to participate in such a taxing
assignment.
     Now that she is feeling well, talk of cancer fades. Anna's present
priorities remind one of the old saying that when sex is bad in a
relationship, it consumes 90 percent of one's thoughts, but when it is
good, it consumes 10 percent. Anna's cancer was now consuming only 10
percent of her thoughts.
     As for sex, often it is a searing problem, as illness takes away not
only one's desire but a vital sense of one's sensuality. Experts recognize
that this loss can create serious depression and anxiety regarding one's
partner as well as oneself. Now Anna giggles and says that she even felt
good enough for sex for the first time in ages. "But it was crazy! I was
trying to get comfortable, moving my leg this way, my arm that way, and Jan
was trying to make it easy on me." She and her friend joke that they had
invented the Kama-Sutra for the physically challenged.
     Anna slurps the bottom of her drink. "Isn't it neat that I never said
anything to the kids? I don't know why, but I just knew that the time was
not right. I'm so glad, however, that I got things started with Dottie; I
don't know what ups and downs we're going to have with this ride."
     Anna announces, "I may become a guinea pig--which is kind of
exciting." She and Jan are exploring experimental clinical trials, even as
she counts her blessings. "I thought I would be dead by now. It's been two
years since my recurrence and I didn't think I'd see two years. I don't
think Jan did either. I know I will definitely be here by the end of 1996.
Now I can see lasting until Lindsay's middle school graduation in another
three years. We've made such progress. With Taxol and Arimidex I got more
than a free year! Maybe I'm getting cocky, but I'm starting to say,
"Weelll, maybe a little more, depending on what drugs come out."" Anna is
taking a mental holiday from the incessant drumbeat of cancer--her blood
work, the checkups. "Ken and I agreed to just back off over the summer."
     The long, glorious summer spins on. Jan and Anna exult in the joys
of a near-normal life. "It gave us a window of hope," says Jan. There are
     many weekend trips to Richmond for them and the children. Anna relives
memories as she scours and paints walls, scrubs and sands floors. Friends
drop by. They had a wonderful evening at a Japanese steak house,
celebrating Wayne's birthday.
     One fine day in late summer, Jan and Anna go sailing with friends in
waters so calm that they drift more than sail. Anna sits in the back of the
boat, alone. She is memorizing everything about nature, burning memories
into her brain, looking at the greater beauty of the whole world.
     Twelve-year-old Ellery has shot up more than two inches and slimmed
down over the summer, and is virtually unrecognizable. "Nils went on a trip
and came back four days later and said, "You've grown." He's really become
a handsome guy." But Ellery does not sound himself when he answers the
phone on August 20. Friendly questions about his summer are greeted with
monosyllables, then the phone is quickly turned over to his mother. "Hi
there," says Anna, but the bounce is not in her voice. Asked if she had
been awakened, Anna says no, in a flat voice. Something is very wrong. The
easy flow is missing. The caller mentions not being able to reach her
doctor for an interview. "Well, he's there now. I saw him yesterday."
     "You went in for your blood work?" "Yeah." Pause. "My markers are
going way up." "Oh, no!" "Well, we always knew Arimidex gave us just a
little skating time." Her laugh is without mirth. Even though the tumors
had disappeared on X rays, the cancer cells remained in her system and, as
Davidson predicted, were surfacing again. The caller feels as if a knife is
twisting in her stomach. Fear grips her chest and a tingling chill settles
in her arms. She doesn't know what to say. A deep breath from Anna courses
through the phone. "Anyway, Ken tells me there is another new chemo drug,
the name sounds like a Hawaiian dessert--cookoo coca, pooko poka, something
like that. [A month later, she says, "I can't spell it, but it sounds like
top-o-teek-an."] That may be premature, but anyway, we'll see, we'll see."
     Her friend grasps for anything positive. "Didn't you tell me that
rising markers are not necessarily a negative sign?"
     "When you're killing off a lot of tumors with chemo, they can rise,"
says Anna. "But that isn't the case now, I'm not on chemo. In three
     months, they've gone from seventy to one hundred sixteen to one
hundred seventy-eight." After seven months of extraordinary health, she is
trying to absorb this blow. "No matter what we do, I think I should stay on
the Arimidex. It's really fighting the estrogen; it's really low and that's
good." After a few minutes of small talk, Anna gets off the phone; she
cannot bear to talk about the end of her golden summer any longer.
     Six days later, Jan is chipper. "Weellll, things go up and down," he
says. "Remember when NIH said Anna could be a candidate for some new
trials, except that she was doing too well? I thought, "What the hell," and
called them back. They're interested. Maybe while the tumors are still
small, something different will give it the old knockout punch." The head
of the clinical trial will meet with them in two days. To be eligible
for the trials, Anna must be off Arimidex, so she stopped this week, just
in case.
     Once again, they are cliff-hanging. Jan remembers their frantic
struggle for a bone marrow transplant two years before. "In hindsight, it
was a lot of work for nothing. You're in the hospital for a month and
whacked out for six, with all that poison dumped into you. Anna has a
friend who went through it and in ten months, it's all back. Evidence shows
that it has not panned out so well for breast cancer."
     Miller is asked if he thinks the NIH study would be beneficial. "I
don't think it's harmful and I don't think we're going to lose anything if
we need to go back to the Arimidex. Anna is exploring a totally different
avenue of cancer therapy, which is immune therapy. One of the very basic,
interesting, and difficult issues of breast cancer is how is it that it can
remain quiescent for five, six, seven, ten, even fifteen years and then
show up again? What happened in that period of time? What were those cells
doing? There is an implication that maybe the immune system was keeping
them dormant. Anna had a long time in remission and so maybe there is
something we can do to help her body get back into remission."
     By September 5, Anna's mood was skyrocketing. "Lots of excitement
here. Lindsay broke her clavicle on August 31. She was racing on her bike
and hit the steel pole of the basketball hoop. Brakes didn't work. She was
in a lot of pain and slept with me; I had her packed so she wouldn't roll
off the bed." Lindsay wears a clavicle brace that pins her
     shoulders back so that the clean break will come together. "One doctor
said, "Put two pieces of a clavicle bone in the same room and they'll find
each other."
     "Now for some more news. I'm in the program! I've started prednisone;
I'll be the size of a house. The prednisone is to lower my immune system,
to suppress the antibodies so they don't see these foreign
antibodies--which come from mice spleen!--that will be pumped into my
system and go charging off, yelling, "Kill, kill!"" Miller comments, "God
willing, the mouse antibodies that NIH is trying will kill cancer cells.
There's rationale to it. There was a real interest in vaccines a number of
years ago and it didn't seem to be panning out, so it was dropped. But this
is a whole new generation of vaccine trials. She'll be in a wonderful
place, getting good care."
     "Ken has sent a lot of people to NIH and they've all been rejected,"
says Anna. "I'm a fluke. I'm perfect for this study. Physically and
agewise, I'm in good shape. Basically I'm a "clean" subject, even after
having had so many medicines." Grateful for Arimidex--"I was able to do so
much and it gave me seven very good months"--Anna now dismisses it as the
hope of the past. "Been there, done that. Now it's on to the next,
whatever." She says, cheerfully, "We'll see!"
     Monday, September 9 Anna has taken so much prednisone that she seems
on speed --flying high, talking nonstop, engorged with energy. "Hiiii!" she
fairly shouts, sitting cross-legged on her hospital bed at NIH this first
day of her experimental treatment. She looks great, her eyes wide and
bright, lips brushed with gloss. Hair floats around her ears and down her
neck. She wears two gold chains, gray Donna Karan sweat-pants (discounted),
a low-necked loose-fitting purple tank top that reveals her life port,
unencumbered and ready for action. "Imagine what my arms would be like if
they had to shoot up my veins! I'd have more tracks than a heroin addict.
     "Boy, they spare no expense around here. I wonder what all this is
costing? Everything is paid by the government. As long as I'm in the study,
it's all free to me." The room's decor is an attempt at restful serenity.
Walls are covered in a combination of textured lavender-and-gray wallpaper
and matching gray-lavender paint. A discreet lavender-and- gray pattern
marches across the curtains. Even the leather chairs are lavender, a
departure, to say the least, for hospital furniture.
     Anna explains her treatment. "I take massive amounts of prednisone--so
high that the steroid suppresses my immune response, but it also gives me
all this energy and I am starving all the time." She imitates marking her
menu. "Chocolate cake? Yeah! ... Ice cream? Oh, yeah!" At 2:00 P.m., Anna
had had her first shot of the "mouse-spleen protein," or LMB1--1 liquid
administered through her port every other day that hopefully kills cancer
cells. Although some studies have been conducted, Anna is the first to try
such high doses of prednisone along with the LMB1. The National Institutes
of Health is trying to find a dosage tolerance that would keep the body
from making antibodies that would fight off LMB1, the foreign
mouse-spleen-protein derivative, as it enters her system. "Now I don't want
to sound too altruistic," says Anna, "but I am part of a study that may
turn up a wonderful drug for a bunch of other people down the road."
Several more phases must be conducted before that could be achieved.
     The esteem surrounding the National Institutes of Health filled Anna
with awe at first. "You think, "Jeez, I'm at NIH!" Then you go through the
halls to get a chest X ray and there are dust bunnies and paper and boxes
of chemicals and all right in the halls, and you think, "This is NIH?"'"
But she quickly switches, raving about the efficiency. She checks her
watch. "It's six twenty-eight and they're supposed to take my blood
by six-thirty exactly and she hasn't shown." Two minutes later, on the dot
of 6:30, the nurse appears. "See?" says Anna, beaming. Dr. Lee Pai, who is
conducting the trial, "is very scientific and straightforward. They are
incredibly thorough and explain everything. I love it here."
     Anna is out of bed, padding down the hall in her tennis shoes, not
giving a fig about the absent boobstbra. More than once, she will refer
to this week as her "NIH holiday." She could be selling a tentative spa
customer on memberships: "They've got Ping-Pong tables, unlimited free
phone calls so patients can call back to wherever they're from, a
refrigerator down the hall here." She waves at the nurses' station, passes
through a door, and opens the refrigerator. "Here's the stash"-- pointing
to RC Cola, Sprite, milk, chocolate and white, juices.
     Back in the room, Anna introduces her roommate, who has returned
     from her walk in time for their early dinner. In April of 1995, Janet
(not her real name) had a sudden seizure and collapsed. Doctors found an
inoperable brain tumor. Although her mental capacity is fine, the tumor has
affected her motor skills; she walks with a limp and one arm is quite
useless. Janet is another young mother, with an eight-year-old son. For
forty-two weeks, she has been flying in from the West Coast every other
week for treatment with experimental drugs. Janet is almost anorexic thin,
wears glasses, and seems very private. Unlike Anna, she is reluctant
to discuss her treatment or even to reveal her name, but she is equally as
fierce a fighter. Despite the painful disruption of her family life, Janet
clings to this exhaustive regimen. At one point when she is out of the
room, Anna explains, "It's all that has kept her alive and stable.
Unfortunately, one of the long-term effects of these drugs is that it
causes depression."
     Anna speaks protectively of her roommate. They have entered into one
of those instant friendships, a bonding that can occur when people endure
trauma together--whether it be soldiers in battle, families in war-torn
communities or those ravaged by disasters such as floods or hurricanes, or
two women lying side by side in a cancer ward. At night, they talk about
their children, sobbing at times. Janet searches in agony to find meaning
to their cruel fate, and has come to a small glimmer of acceptance that it
is God's will. Anna thinks that it may be just the unhappy roll of the
dice. She has also discovered and encouraged a vein of humor in Janet. Anna
recounts the gag she had devised that morning with her roommate. Expecting
"grand rounds," the two women and a doctor decided to pull a gag on the
collection of doctors who stand around their beds-- to stare at them and
ask endless questions. "Janet would be covered in Post-It notes and she
would just point to them when they asked questions. I thought, "Why not do
it in languages, since there are doctors from so many countries?"' We had
nein and s@i and oui and so on plastered all over her --and they didn't
show up! Isn't that disgusting?"
     Talk turns to the children. Not only is Lindsay facing the discomfort
of her body brace, she is disoriented by a sudden switch in math classes.
"It's a big trauma for this kid. She doesn't like to have attention called
to herself. She says, "Mom, can I wear the brace under my clothes?"' "No,"
I say. "I want it to be a warning sign so that someone won't accidentally
hit you.""
     The phone rings, a crazy high sound that sends Anna into laughter.
"Can you believe it? The "chirping cricket."" It's Ellery. Anna peppers him
with questions: "Hey, how ya doin'? Aced your math quiz? That's great. ...
Tons of homework? ... Really? ... You'll love Tom Sawyer. ... You sound
like you're getting a cold and I think you should not come tonight. ..."
Lindsay gets on the phone. "Now tell me, who's in your new accelerated
math? ... Oh, good, you'll have someone to help you. Is it as hard as
seventh? Harder? Great! ... How's your shoulder? Don't pick up anything
now!" Jan is now on the phone. "I know," she says, her face showing that
they are not coming that night. "It sounds like they both have masses of
homework plus he's got a cold. ... I don't know if they'll let me out
tomorrow. I feel great. I'm oinky pig and always hungry." Off the phone,
Anna says, "I feel so sorry for that little boy. Now that Jan has to drive
Lindsay to school, Ellery has to leave on the bus at six and doesn't get
home until after four."
     Wednesday, September 11 Anna awakens to the taking of blood and urine,
the administering of potassium pills. "I got a pass yesterday--you have
to be back by dark--from Dr. Rivera. He jokes about this being "Hospitality
Central." I went home and cleaned the bathrooms. Coming back here is my
vacation."
     Anna is sweating. Looking at her prednisone-swollen face, she jokes,
"Cheeks, cheeks, where are you?" She jumps out of bed. "Let's say we go up
to the recreation area." As she gets off the elevator, a chapel is directly
to Anna's left. She clownishly makes an exaggerated detour, charging
forward to the huge gym with its full-sized basketball court, used by NIH
employees, visitors, and patients who are well enough.
     The next day, Anna is home on a pass and drastically different. Her
friend Lockie answers the phone, her voice low because Anna is resting on
the couch. "She's very tired and doesn't want to see anyone." Anna asks
to get on the portable phone. "I took a shower and was so short of
breath--panting from just drying myself--and I got terribly dizzy. I tried
to walk down the hall and had to keep stopping. I didn't know if I had the
muscle strength to keep myself up." Anna has a sore throat and, although
fully dressed, is freezing. She crawls into bed until it is time to return.
     Friday, September 13 Anna explains that her reaction was "totally
normal. The drug causes capillary leak. You're not able to make the fluids
go into the kidneys. The capillaries will get repaired when I'm off the
drugs." It is Anna's last day at NIH and the end of the LMB1 drug. Anna's
arms and legs are so swollen that she has to sleep on her back with her
legs up. "My cheeks are disappearing into my eyeballs. Dr. Pai said that I
would feel tired, but I couldn't imagine this tired; she's very pleased
with the results." Anna looks over a questionnaire she has to fill out,
evaluating her NIH stay. Anna laughs at the wording. "They ask if the food
"exceeded expectations." Well, when you think of hospital food, anything
would exceed expectations."
     The family arrives for their last afternoon at NIH. Lindsay's eyes
widen when she sees her mother's face; she stiffly embraces her, because of
her brace. Ellery, stuck with homework all week, curiously examines the
room for the first time. "Mom, you're a happy lab rat!" Anna shows him how
the bed works and her tiny television that zooms in and out at the merest
touch. She pulls it up close and makes a face in it. Ellery turns it every
which way. Lindsay says little and sits close to her mom. Ellery begs for a
turn on the video games in the recreation room. Anna asks about homework
and Ellery relates that he has to write a journal for science and English.
Immediately, Anna turns her experience into a learning venture. "You gotta
check out this hospital, how this stuff works." Grateful for the
suggestion, Ellery inspects everything even closer. After they leave, Anna
comments on Lindsay's quietness. "She's been very low-keyed. She seems very
mature at times. I don't know if it has to do with me or that it's just her
age--she'll be eleven in a few weeks--or embarrassment or what."
     A social worker walks in to chat and soon they are talking about how
people don't want to face living wills and other matters of death. "My
mother is so stubborn, she wouldn't do it," says the social worker. "I made
my parents do it," says Anna. "I said, "If you want us to do it the way you
want, you have to have it in writing." They asked me about mine here and I
said I had it at home and they said bring it in. I'm for that."
     Anna's room is besieged by staff. A research nurse says, "I've come
to touch base with you concerning your questions on cancer research," but
immediately makes it clear that Dr. Pai is in control and should be con-
     sulted. "I'm hoping this is going to work," says Anna, "but I'm also
concerned about what happens if ... Once I am in the system, I would love
to stay. ..." Anna describes Ro's cancer, her concerns for Lindsay, and
asks if she could be a candidate for gene research. The nurse says gently
but firmly that she should talk to Dr. Pai for any information on breast
cancer trials. "Thank you," says Anna, adding with a rueful smile, "Insert
foot in mouth." Anna wants the nurse to understand her emphasis on "staying
in the system." She recounts her disastrous attempt at the bone marrow
clinical trial. "Since then, I'm really not confident in those 1-800
government [phone] numbers." The nurse says, "PDQ gets updated monthly."
     Then she softens and explains her frustration in getting data in order
to make precise criteria for eligibility. "I am trying to get Mass. General
involved in helping us for a lymphoma study. They have used this study
three times--but we haven't a shred of their evidence. We can't get them
to collect this information. Satellite research centers just don't care
about eligibility criteria as much. It's a disservice. We have to start
over and it adds up to government waste." Anna nods sympathetically. The
nurse sighs. "Research nursing used to be outstanding--annual bonuses and
so forth. Now it's a pass-fail system--and no monetary incentive. And the
government wonders why they can't keep talented people." She continues with
her frustration regarding NIH satellite research centers, how she's
"written memo after memo" to no avail. "They all blow it off, even if the
NIH is trying to do good." She mentions in particular the site at nearby
Frederick, Maryland. "That's where Mr. Science came from!" says Anna.
     Anna relates one of the few support group meetings she attended. It
was last November, a bitter, freezing night, and about twenty-five male and
female cancer survivors had turned out for a lecture on the prospect of new
treatments. Many wore ill-fitting wigs. "These were desperate people
seeking information about cancer--and this major science nerd was talking
about T cells," she recounts. Anna questioned him as to why protocols were
changed without proper notification. "He couldn't say anything except "All
I do is this. I don't know anything about anything else."" The reasons
protocols were changed were, in part, he said, because "in clinical trials
we kill people." When the scientist spoke in
     mystifying jargon, one person in the audience asked caustically, "Is
it too much trouble to speak English? These people want answers that will
help." The scientist smiled and said, not without pride, "Some of my
colleagues say I'm too technical." Anna says, "See what us average patients
are up against?"
     After the nurse leaves, Anna says, "Everybody around me is a whole lot
sicker than I seem to be, so I kind of have a good time. It's friendly
here. The patients get out in the halls and yack." Anna fervently hopes
that she is a successful guinea pig and can return. "I really like this
place," she reiterates softly. "They care on a personal basis. They had an
eighty-year-old in here and you could tell by the way they treated him." At
the end of three weeks, she will know the results. "Oh," she says, "let's
hope!"
     CHAPTER TWELVE
     In Limbo
     For the rest of September, Anna tries not to think about the impending
results of the NIH trials. On glorious Indian summer days, she eats lunch
with friends on her back deck, gazing at golden floating leaves, brushing
away hovering bees, closing her eyes and turning her face toward the fading
sun. Anna is not prepared for the extent of her fatigue. Ellery helps his
mother down the deck steps to the garden. "I shouldn't have done it, but I
wanted to just stand there and pick the last tomato of the season." She
drives to the ballet studio to work on The Nutcracker. She becomes the
tough Warden of Homework Detail, prodding, insisting. "You are not by the
computer--you are not even close to the computer!" Anna shouts down the
steps to the den; even though she cannot see him, her mother's instinct has
caught Ellery playing hooky.
     In October, Anna and Jan return to NIH for results of the clinical
trial. Anna stumbles out, crying. Her "happy lab rat" days are over. "The
good news is that my immune system was so low that it didn't fight the
mouse stuff. The bad news is that it didn't matter; LMB1 didn't do a thing
to shrink my tumors." A sadness creeps into Anna's voice as she remembers
how cosseting life had been as a favored NIH human guinea pig. Although she
has always known the rules, Anna can't help characterizing her termination
in tough terms--"they kicked me out"--because she feels so abandoned. She
had kept in the back of her mind that if this trial didn't work, something
else would come up for which she would be eligible. "I stopped by to see my
roommate--they're kicking her out too. After all this time, she's going
home; it's not working for her
     anymore." Unlike others who bond in fleeting moments of togetherness,
their connection is not broken, and they talk to each other long distance
for months. One day in January 1997, Anna calls Janet and gets her husband
instead. Janet had died two weeks before. Her frail and wracked body could
not survive pneumonia. Anna sinks into deep depression, not only for the
loss of Janet but for her own uncertain future.
     On October 22, 1996, D day for another new chemotherapy treatment,
Anna walks into Miller's office. She is sweating from a hot-flash attack,
in pain, tired, and angrily obsessed by a misreading once again of her MRI
by the radiology center. She fired off a critical letter, demanding to "see
and discuss every film of every future scan with both doctors [Miller
and the radiologist]." She radiates a new sense of purpose, steely urgency,
determination, and anxious concern. Dedicated to monitoring everything, she
is armed with her NIH X-ray folder and studies on various chemotherapy
treatments gleaned from the Internet.
     "This stuff is growing," she says in quiet fury to the nurse, pointing
to her neck and throat. "NIH found these when your guys didn't in August.
That's the second time in eight months that they've given me bad readings!"
"Are you in pain?" asks the nurse. "Yes, I am in pain!" Anna has another
gripe, the latest insurance wrinkle--her tumor marker tests will no longer
be paid by them. "That's eighty-five dollars a pop at least once a month."
     The door opens and Anna surveys a tall, lean man who looks like a GQ
ad--gleaming polished tassel loafers, tan slacks, tan patterned socks, blue
jacket, blue, tan, and maroon tie, well-trimmed beard, brushed-back dark
hair, mustache, glasses. The opposite of rumpled Miller. "Well, here is the
wonderful Dr. Kaplan, who looks like James Taylor," Anna banters. "If he
could sing and play, he wouldn't be here."
     "So," says Kaplan, "are you starting something new and exciting?"
"Navelbine, yes--but I have some questions first." Anna bombards him and he
explains that this chemotherapy stops the cells from dividing.
Uncharacteristically, Anna stops him in midexplanation, so urgent is she
to get to the tumors in and around her neck. "I want to know if we can
start radiation. It's killing me now." Kaplan probes around her neck with
his fingers, then as Anna starts her chemo drip, he holds her neck X rays
up to the light. "See this mongo round guy on the soft tissue?" says Anna.
     "They're on this [NIH] X ray, but they missed it here! And now the
clavicle really hurts and the neck and I have tumor fever and this sucks.
     "Another question I have, and this might sound bizarre --tell me what
you know about hydrazine sulphate." Kaplan says, "It's mostly to improve
nutritional status, gives you a sense of well-being, energy--" "There was a
story in Mediaweek," interjects Anna, "about what's-her-face, Bob
Guccione's wife, who had this amazing reaction--boom--remission. But you
read other articles and it's all so convoluted." Kaplan nods. "I've got
some articles that would make you swear by it." "If it is primarily for
nutrition," Anna asks, "how can it cure breast cancer?" She shakes her head
at the claims of Mrs. Guccione. Kaplan replies, "You don't know, she could
have had some sort of spontaneous remission." (guccione's wife died in
1997.) Kaplan opens the door for trying experimental methods: "If we run
out of options, I'm all for that. We know that a lot of what we do in
traditional medicines doesn't work on some people. But we're not there
yet." "I don't want to be there," says Anna. She lowers her voice and says
in robot fashion, "I-do-not-want-to-go-there."
     A week later, Anna is at the Shady Grove Radiology Center, a half hour
from home. She lies on the radiology table; areas where radiation will hit
are finitely calibrated, then indelible black lines, like crosshairs on a
gun, are drawn on her skin to mark these points. Three days later, on
November 2, an early Saturday morning, Anna casually shows the marks on her
neck to her ballet friends. They are busily cleaning out a barn in the
rolling hills of Maryland near Anna's home. Anna hoists boxes and shifts
garden tools and sweeps the floor. Jan and some other fathers are in a van,
on their way to unload Jane Bittner's basement of scenery so that the
ballet group will have space to build additional Nutcracker sets. It is one
of those glorious cold-apple-cider days, with piled leaves drifting in
gusts. The van lumbers into the yard and there is much tugging and pulling
as fake trees and lumber, a large papier-m`ach`e wishing well, human-sized
gingerbread men, and other items that turn a bare stage into magic are
stacked in the barn. Now Bittner's basement is empty and ready. The mood is
jocular and Jan seems especially happy in the company of friends. One
of the male parents who will dance in the ballet's opening party scenes, he
attacks the task with relish.
     The following Monday, Anna plunges into three weeks of radiation,
which turn out to be far more terrifying than she ever imagined. In her
usual jaunty manner, Anna greets the receptionist, a pleasant blond who
goes out of her way to show kindness to patients. Later she confides that
her empathy was ingrained when her mother died of cancer. The waiting room
is small, decorated in rose and green, and on one wall are pamphlets
reminding people of why they are here: "When Mommy Has Cancer" is one. A
counter is stacked with nutrition-building milk shake drinks, tea, and hot
chocolate.
     Anna enters the radiation room. The metal door is two feet thick. The
chilly room looks like a stage for some minimalist play. The centerpiece is
the table on which Anna will lie, strapped in place, that can be
mechanically tipped to whatever angle is necessary. Overhead a lumbering
piece of equipment hovers, looking something like the cab of a semitrailer.
It will turn by remote control to move over and around Anna. From this, a
red laser line marks the center of the beam of radiation to be zapped
directly at the crosshairs on her neck and chest and upper stomach and will
reach into her back and spine. The ceiling and walls are plastered with
scenes of flowers, waterfalls, trees, mountains, seasides, placed for
patient viewing no matter how they are turned. Technicians leave the room
for their safe operating spot in the room next door. Anna is alone as the
two-foot-thick door thumps shut.
     After a few treatments, Anna almost trembles when she has to walk
through that door. "It's the most horrible experience ever," she says.
"Worse than chemotherapy. Part of it must be psychological. I don't like
the smell of burning, and I could smell and feel my neck burn! Dr. Stinson
says I smell the ozone, that I'm not burning, but ozone is produced from
burn, so there's no difference to me. I had been told, "Oh, its not
painful, it doesn't hurt at all. You'll have very few side effects--a
little trouble swallowing and the area will get sore and swollen." I was
not prepared for this horrible feeling."
     Anna describes the sensation. "Think of when you're in the tropics and
take a deep breath and feel that wonderful moisture go way into your lungs
and back out. Then picture yourself in the desert; you take a deep breath
and feel a dry, hot, parched burn in your lungs. When I breathe while being
radiated, I feel as if I've gone into a hot desert waste-
     land and am burning up inside. Ellery asks, "Why didn't you try and
hold your breath?"' I try but can't always manage. Radiation zaps are like
twenty to twenty-five seconds long and I'm in such tension that I have
to breathe." When Anna comes out, she rushes to the cool milky drinks
to soothe her fiery insides.
     Even knowing that she has only one last session to endure doesn't
quell Anna's anxiety. As she is driven to the radiology center, Anna sits
with arms folded, bending over as if she has stomach pain. "I hate this, I
hate this!" she says in a tortured, keening tone. "I know many others who
don't think radiation is so bad. I must have some phobic sensitivity. I
just can't stand it!"
     But stand it she does, and when it is over, one of the technicians,
Tom Krupa, shakes her hand admiringly and wishes her luck. "I wish more
patients were like you, looking at the disease and what's out there for
you, knocking on doors, asking questions, really good questions. Not like
"Do you validate tickets or is there free parking or when are my
treatments?"' but questions like "There's nothing in my C2, my spine, is
there?"' "In my bone scan, I can see there was something there, but how
come they're saying such and so?"' You're terrific. Your husband was real
good support too, coming here and asking questions. Some of these people
are all alone."
     Anna smiles wanly before guzzling another mouthful of chocolate drink,
then carries on a discussion about getting patients to "pay attention
to their own diseases." Krupa nods. "It's fear. Fear of the unknown. And,
hey, what about just trying to get your own medical history from your
family? I asked my mother, "What did Grandma die from?"' "She died of
something, something down below." I said, "What do you mean, down below?"'
And she says, "I think it was the coln." [Krupa pronounces it without the
second o.] I said, "You mean "colon"?"' "No, well, it was something. I
don't know." And I said, "Mom, I want to know what my grandma and granddad
died from!""
     While Anna is undergoing her treatment, Dr. Susan Stinson discusses
Anna and radiation. She is tall and willowy with curls artfully streaked,
wearing a plum pantsuit with matching plum velvet cuffs and collar. A small
silver pin and a gold wedding band are her only jewelry. She quickly gets
to the point; Anna is in for palliative treatment, not cure--and they can
relieve pain only in the areas they treat, not the liver and
     other areas of spread. The optimum goal for Anna? "That the areas
we're treating will stay pain free." Like Miller, Stinson mentions that
Anna seems to be among a growing cohort of young breast cancer patients. "I
really love older people, they have such a wealth of experience, and I
thought that's what I was going to be dealing with, hoping to provide pain
relief in their waning years." The doctor sighs. "It's hard for me to deal
with people my own age or younger."
     Anna then enters the room and fires off questions. "So do you expect
more tumors or will this be it for the neck area?" Anna wants radiation
to be over for good; she is also concerned that she can't take chemotherapy
for liver tumors while doing radiation. Anna tells her that she is in deep
pain, taking Percocet, antinausea drugs, and "good old Mary's Magic
Mouthwash"--a liquid medication which numbs the mouth.
     Dr. Stinson repeats that "our best result would be that your pain will
go away in the radiated areas and will stay away. Eighty percent of breast
cancer patients do respond to palliative radiation very well." Anna pushes
again. "We think the test at NIH lowered my immune system drastically with
whomping doses of prednisone. Could that have made the body more
susceptible? Why did it grow so fast?" Stinson has no answer. Anna insists
that she could feel herself burning. Stinson says she wasn't. "When we
treat the brain, head, and neck area, some people really complain about how
bad it smells, so you may just have a good strong sense of smell." Stinson
explains how radiology works--it makes a break in the DNA of all cells.
Overnight, repair takes place in both normal and cancer tissues, but the
cancerous ones are less good at repairing themselves. "There's the
differential that we're working toward."
     It is six days before Thanksgiving when Anna closes the door to the
Shady Grove Radiology Center for the last time. In the car going home, Anna
shouts, "YEAHHHH! It's over and I'm so glad! I want to go and see the new
Star Trek movie, my hope is that I could talk everybody into going. It
opens tonight." (they did.) She mulls over her conversation about stress
and cancer with Dr. Stinson. "The ballet is happy stress, the medical crap
is exasperating stress."
     Anna turns into the driveway and sees Ellery, returning from school.
Her son chose a particularly rough time to take a nosedive in school, while
Anna was at NIH. Although her illness may have been part of the
     cause, she brooks no excuses. Rolling down the window, Anna says, "Is
there a report card in your backpack?" Ellery nods. He pulls it out for
her. Anna smiles and says, "You are awesome," as she runs her eyes down the
card. "You're on the honor roll, dude!" Ellery smiles and continues
into the house. "He went from three D's at the interims to B's in his
magnet courses. See?" she says with satisfaction. "That's why we have
to push on the homework."
     For Thanksgiving, Anna nests calmly with Jan and the children, quiet
time needed by everyone. In the first days following radiation, Anna's
throat is so swollen and raw that it pains her to eat. She winces as she
forces herself to swallow fluids. By Thanksgiving, her throat is better,
but, ever since the radiation, Anna has developed severe headaches.
Although in pain, Anna dresses up in gold lam`e and feathers while Linda
Suarez, her photographer "cancer buddy," also a Ken Miller patient, snaps
photos that reveal an altogether different vision, a stunning, smiling
Anna.
     After Thanksgiving, Anna skips a chemotherapy treatment. "I just have
too much to do with the ballet and I can't be that drained of energy." In
addition to creating the Nutcracker program, supervising the printing,
writing stories and news releases for the local papers, pitching in with
costumes, managing the volunteer parents, Anna is much in demand as the
only one with professional training in stage lighting. She works the lights
for all performances. Lindsay, now on pointe, is luminous. Ellery works on
stage props, Jan struts smartly on stage in Victorian costume, dancing a
reel. The high school's impressive auditorium is filled--2,000 attendance
over four performances. For an amateur group, the production is
surprisingly professional. Afterward, Anna comes down from her exacting
task in the lighting booth for the postperformance party.
     The Friday before Christmas, Anna finds out that the chemotherapy
poison has done its damage. "My white blood count is really low again."
They plan to give Anna shots at the office, but Anna is in a hurry and
says, "Just give me the prescription for Neupogen and I'll do it at home."
That way, Anna can shoot up whenever she needs to during the holidays.
Since she is not able to travel, Anna has talked her father into coming
north, and Ro and Cliff and her father are all arriving that afternoon. The
pharmacist cannot fill Anna's prescription until the day after
     Christmas. "There wasn't a white cell left in my body. On Christmas
day, I couldn't do anything."
     Anna's "Christmas from hell" has its good moments with Jan and the
children and Cliff and Ro and her father. "I wish my dad would move right
in. He's so easy to deal with. We all had a grand time. They love to eat
and cook and drink beer, but I was sick as a dog. On Christmas night, we
had this lovely standing rib roast. I forced myself to do the dishes
because I wanted to do something--they had lived in the kitchen--and then I
lay down, taking Compazine [an antinausea drug] so the food will stay
down."
     Anna had been concerned about this holiday for several days. Because
both brothers and their families had planned to be away from Cocoa Beach,
Anna had invited her father. Now, it turns out that one set has decided
to descend on Anna and Jan, and the others are visiting relatives nearby.
As Anna rests after the Christmas Eve meal, Marty, Anita, and their two
children arrive. Her headaches persist, along with blurred vision, and all
she wants to do is sleep. "We fed everybody. It was only four new people,
but it seemed like ten," Anna recalls. "It was their kids--and mine too.
When kids get together, everything gets louder. But their kids are
screamers. They're shouting at you and jumping about. It drives me crazy!"
     She is angry that her brother, Marty, and his wife have brought a
television set for Ellery. "Would you give a twelve-year-old a television
set without asking the parents? You'd think they would ask, "Is this
appropriate?"' They didn't give it a thought. I told him we could keep it
somewhere, but that he was not going to have a TV in his room."
     Anna struggles through Christmas day, and on the twenty-sixth they
serve nineteen for dinner, including her two brothers and their families,
and assorted extended relatives. "That was chaos, just too many people. Ro
said I passed out on the sofa. I don't remember a thing, I was so sick.
By eight, they put me to bed. But I had had my first Neupogen shot, so that
I knew I would get better every day."
     But the news is not good when she returns to the doctor's after
Christmas. Anna looks good, having lost 14 pounds from her bloated
prednisone days of 170 pounds. But blood tests show that Navelbine is
definitely not working. "One test checks your carcinogen level. A regu-
     lar person is zero to four, a smoker is between four and twelve. I was
one hundred eighty-something! That was bingggg--off the charts. The tumor
marker was so bad that they had to dilute the blood to measure it because
it was so thick--that's bad." Anna is put on Taxotere, the chemo that Anna
had heard about last spring, now on the market.
     A few days after Anna starts Taxotere, she is stricken by a malady so
terrifying that she gasps for air, as if she had been socked in the
stomach. While performing one of those mundane necessities of life, writing
out a check for groceries at the supermarket, Anna is suddenly seized
with a massive headache and her vision blurs drastically. "It came on out
of nowhere," she recalls afterward. "I couldn't focus on anything--the
check or the person in front of me--I couldn't read the register. No matter
how hard I blinked and tried to organize my eyeballs, they wouldn't focus."
     The checkout clerk helps fill out the check and Anna manages
to stumble to the car, cautiously backs out of the parking lot, and drives
the few minutes to her house, where she lies down, petrified and exhausted.
"I didn't know how long this was going to last. Had I ruined something
permanently? Or has this [Anna cannot bring herself to say "cancer"] gone
up into my head? Everything just starts to go very dim and I can still see,
but it fades and gets really dark, like it's night. And white becomes this
weird yellow. It's got to be associated with these headaches." Her vision
is too weak for her to walk. She mostly sleeps because keeping her eyes
open is too painful.
     No one in the family mentions what everyone is thinking. Brain scans
are immediately taken. Nerve-racking days ensue until the results are
available. Relief enters the Johannessen household. Says Anna, "I didn't
have even the beginnings of a brain tumor." But the baffling headaches and
vision attacks continue. One afternoon, Anna sits in her living room,
concern clouding her eyes. "The CAT scan doesn't see anything in my brain,
and they've done one spinal-fluid tap and that's negative, but you're
supposed to have three before you can tell for sure. Nobody can tell what's
going on in my head and it's driving me crazy."
     In the first weeks of January 1997, as her problems continue, Anna
confronts issues that are "all of a sudden real life changes, like what if
I'll never drive again? What am I going to do? A shut-in!? For five days, I
couldn't go out of this house. To have to ask yourself, "What are you
     going to do if you find out you can't drive anymore? If you find out
you can't read and you can't see the television set? What are you going
to do with yourself?"' I feel so much fear," she says, curling in her
corner, while a friend sits nearby, touching her arm. "I can't function
and the days just drag and drag. I'll be up at six and sitting here
thinking, "What the hell am I doing with myself?"' And I can't do anything.
I can't read. Can't pay the bills, watch television. I have to lie
absolutely flat, because of my head. And so I go to bed by six o'clock."
     Fearing the reason, the usually direct Anna doesn't tell anybody that
her vision problems are continuing. "I should have gone right to Ken and
had him have a neurologist see me," she reflects later. Anna is terrified,
a fairly rare emotion for Anna but not uncommon for those whose options are
dwindling. "The scariest thing for anybody is losing sensory faculties,"
Jan says later. "Anna could take pain but not this fear that she was
getting to the point where she was losing control. Losing your mind is like
losing yourself." Anna says, "I didn't say anything to the kids about my
own fears, I just withdrew, even though I was happy when they came home.
They let me know they would do anything for me. They've been very
nurturing."
     Anna had continued to take Compazine for nausea throughout radiation
and chemotherapy. Compazine can cause severe reactions in some people, but
Anna never had any problems taking it. When she told Miller that she was
still having vision problems, he said, "Get off of the Compazine. It may be
the problem in combination with Taxotere." A happy Anna reports
by mid-January that her vision has cleared. "That did it!"
     Despite her relief, those fearful days had jarred her like no other
since that day two and a half years ago when she learned her cancer had
metastasized. In addition, her body was under assault from Taxotere. "Every
time I go in, they tell me another piece of lovely information, another
little piece isn't quite working the way it used to work. The side effects
of Taxotere seem to be lasting longer than Taxol. Maybe my system has had
so many drugs--they've just been pumping me so full of so much stuff--that
it can't jump back anymore. I feel like my insides are being burned out and
I feel really, really draggy. Of course my hair is going, going, gone."
     No matter how sick she gets, Anna pushes for special moments with the
family. "We need to do something theatrical, cultural, with the kids once a
month because otherwise you get into a daily grind and it's terrible. We
took them to see Cinderella at the Olney Theater in December and now this
in January." For Jan's birthday, the family went to hear the Baltimore
Symphony. "That is the most wonderful concert hall. It is so designed for
acoustics. It was Barry Tuckwell's last performance. He stands up to play,
which most French horn players don't. He did a Mozart piece and then a
modern one by a composer who musically illustrates Maurice Sendak's art,
those really neat creatures. You can close your eyes and see them come
to life. This music was amazing! One of those pieces where you have
to watch the conductor put the baton down to realize it's over. And
Tuckwell's last note is ringing quietly and then you hear ring, ring, ring,
and somebody's goddamn cell phone went off!"
     Anna now sees heightened fear in her children's eyes. "Ellery's
definitely scared, seeing me get so sick, so strange. He is all over me,
pats me, like a pet, saying, "Mommy, oh, I love you, Mom. I love you, Mom."
He will not leave me alone." He and Lindsay stay close to home, play
together instead of seeking friends or wanting to go places. "They're
hovering. If I get into a coughing spasm, Lindsay's right there--"Oh, my
God, Mommy, are you okay? Are you okay? Can I do something? What can I
do?"' I'm trying to say, "I'm fine, I'm just coughing." Sometimes I just
have to say, "Guys, give me some time and give me some space!" I tell
everybody to back off. I have to. I can't take the hovering. If I'm lying
there feeling awful, I have to just push them away. That makes me feel
terrible. It's so selfish, I just want to kick myself.
     "Ellery can't visualize something as huge as my death, but I know he's
thought about it," says Anna. "One day, he told me he was convinced that
the universe was going to die, not just me. And one night we watched the TV
show The Single Guy and the lead's father was remarrying. Ellery flat-out
said, "Well, I'm not going to let Dad get married again." And I stopped him
in a joking way. "Excuse me? I'm still here. What am I, chopped liver?
You're getting rid of me? Where did you send me, Ellery?"' We all had a
laugh, but I know he's thinking that there's going to come a time when
Mom's not here. So I said to him, "Wouldn't
     you want your dad to have female companionship? It wouldn't interfere
with your relationship with him, and that person would never be Mom. I'm
your mom. That person would be someone who could maybe be a new friend for
you. Wouldn't it be nice not for Dad to be lonely? He doesn't deserve
that."" Anna laughs. "Ellery thought about it and said, "Yeah, okay, he can
get married."
     "I worry that Jan doesn't fill that emotional void for the kids when I
can't. I keep saying, "Talk to them, you've got to talk to these kids." He
doesn't take as much cuddle time with the kids. He's more"--she imitates a
gruff he-man voice-- ""Okay, guys, let's sit down, let's do your math,
let's go out and chop down the tree, tote that barge. ..." Jan's just
living day to day, not looking down the road. He gets upset when he hears
bad news--specially big changes. Then he goes off and madly does research.
That's his way of coping, trying to come up with new approaches. And I'm
grateful for that, but he doesn't say to me, "Oh, honey, I'm so scared that
you're going to die"--talk to me as I would like. He'll tell me how much he
loves me and plan the next thing to do. He sees this as a more positive
attitude. He won't verbalize his introspection."
     Anna's bout with her vision left her vulnerable and introspective.
"The blurriness scared all of us. I flat-out said to Jan, "If it goes to my
brain, you will do something about that, thank you, if I go into a coma. Do
not let me live under those circumstances. I don't want to be a vegetable."
It could happen and that thought's terrifying. I have moments of "What am I
heading into?"' I'm not looking for a cure, I just want as much time as I
can get. Yet this disease is one of the nastiest because it takes you piece
by piece. I'm realizing it's happening; there's blood in my stool, blood in
the urine. Now the cancer's going to grab something else. And I just
absolutely hate it, hate it, hate it. I'm seeing a distinction between my
quality of life six months ago and my quality of life now. I get tired so
much faster. I feel lazier. I look at the kids and wonder, "Will I get
to see this or that?"' I can send myself into a real tailspin with that if
I'm not careful, send myself, like now, into moments of hysteria, thinking
like that. So I take a breath and say, "Okay, you're not there yet. You're
not there yet. Take the next drug." But I'm experiencing this slow decline.
It's real. I know Ken knows it's real. And yet I should be lucky because
there are four women I know of who had breast cancer who are
     already dead and I'm not. And a lot of people actually can live like
this. It's just amazing how long you can keep going. I'm starting to really
resent being sick now because it's invading my life."
     Anna says one survival skill is making plans. "I'm still doing my
ballet stuff, which I love. I've broached Jan with places I want to go,
things to do. That does keep you going." Then Anna admits something she
would never have thought possible. As her body slows down, she has moments
of being "almost secure and happy just staying in the house and crawling
under a blanket. I know I'm entitled to that, but is that a good thing? Or
a bad thing? It'll be seven o'clock and I can't wait to get my pajamas on
sometimes. I hurt everywhere and I know if I can just lay down, I'll be
better. But what a damn shitty quality of life that I am relegated to,
compared to six months ago. Radiation has deprived me of sunshine. Can't
sit out, they say, for a year. And it's my favorite thing to do in the
whole world. Screw it, I'm going out, I don't care, let me burn."
     Anna is scrupulous about distinguishing between what she can't do
because of her illness and what she simply does not want to do. "I don't
want the kids to think that every disappointment they're going to have is
related to my illness--that's a lie. So when I don't want to do something,
I tell them, and they can be mad at me instead of blaming this illness."
Everyone in the household is now getting testy. "Anna was a lot more
short-tempered than I have ever seen her. We all were," recalls Jan. "There
was just so much stress with Anna's frightening condition."
     The endless battle with homework feeds into Anna's fears for the
future. "Jan's going to butt heads with them and not take the time
to emotionally work this out. That's why he's going to need a Dottie. Not
yet, but he's going to need somebody to help him understand how to talk
to his own kids, because Ellery was all flattened out after Jan yelled at
him. I quietly said, "Ellery, you had an A in the magnet science program,
and that's something to really crow about, but you're now settling for a B.
Dad wants to see you feel so proud of yourself, he can't stand it. You're
not letting yourself experience that yet and Dad wants you to have that
experience." Jan was the same way in college; the fights we had when we
were first married were because of my getting on him to finish his
Ph.d.--he'd do everything for everybody else and wouldn't do his own work.
I think he sees a lot of himself in Ellery and doesn't want him to repeat
his ways."
     January drags to an end. As Jan and Anna search for new ways to attack
her cancer, a desperate urgency creeps in. Jan is now prodding Anna to go
for an adrenalectomy. In his constant search, he has found a doctor in
Portland, Oregon, who has done a fair number. Letters are quickly
dispatched. The doctor replies that he is no longer surgically removing
adrenals and suggests Anna continue on the Arimidex--now his drug of
choice, not surgery. Another last shot to end any possible estrogen is
to have Anna's ovaries removed. "The operation is called oophorectomy,"
says Anna. "Sounds weird!" She and Jan decide to go ahead.
     The day after her oophorectomy, performed in an outpatient procedure,
Anna gallops through her latest adventure on the phone with friends. "It
was a bilateral-something oophorectomy, laparoscopy, blah-blah
oophorectomy. It was a breeze. The doctor took pictures inside, a little
camera zooming in there! "Here's your ovaries; now you see 'em, now you
don't." The color pictures, man, I couldn't believe it. The ovaries were
bright orange and the tumors on my liver looked like pink Pepto-Bismol
tablets. ..."
     Meanwhile, Anna has been listening sympathetically to a male friend's
eight-month dilemma regarding serious surgery for his young daughter. From
June to January, her friend was highly distracted as he continued his
demanding career. His eight-year-old daughter, Julie, had developed puberty
early and there was concern about her pituitary gland. "God forbid there is
a tumor," her father prayed as he waited for the MRI scan. "I got a message
to call radiology. It was like the experience when Kennedy was shot. I
remember exactly where I was, what I was doing. The radiologist said, "Oh,
by the way"--those were her words--"her pituitary's fine, but there's an
abnormality." And that "oh, by the way" turned out to be a big big deal."
     The man's ordeal had just begun. First he and his daughter saw a
neurologist who said to "keep an eye on her" but added that they should
"see a neurosurgeon to get his opinion." "So we saw a neurosurgeon," the
man continued. "Again, I remember this like the day Kennedy was shot --the
neurosurgeon looked at the films, didn't look at Julie at all, never met
her, and proceeded to tell me about this huge operation she needed, a
six-hour procedure with opening the skull and putting a shunt in. I thought
I was going to fall down from shock." Seeking another opinion, the man saw
"another excellent neurosurgeon who said, "Keep an eye on it." So we had
one saying, "Do a big operation," and the other saying, "Do no operation,
just watch her." So I said, "We'll see a third neurosurgeon." He said, "No,
no, you have to operate, but don't do what the first one said, do a
less-extensive operation." And that's when it became really awful, because
what was the right answer?"
     Different opinions, different thoughts, accumulated as the frantic
father consulted more medical experts. "We finally found a very good
neurosurgeon in Chicago who had a less-invasive surgical approach; they
simply take the bone off and leave the brain alone. I felt comfortable with
that. My wife and Julie and I went out there, after months of tremendous
strife, debating, "What's the right thing to do? What's the right thing
to do for your child?"'
     "Most parents would have gone to the first doctor; he would have said,
"Operate," and the parents would have said, "Fine, let's do it." I had
totally educated myself about it, and I was getting different opinions and
that's when it got to be crazy. What was the right answer? No matter what I
did, someone was going to disagree with it--which is a very tough feeling.
Especially when it involves your child. If we did nothing and she gets
worse, which had been threatened to us as a possibility, then that's awful.
If she had a surgical complication or wasn't the same afterward, that's
awful too. A child depends upon you to make the decision! It was an awful
period, not knowing what the right answer was. There's a sense that there's
supposed to be a "right" answer.
     "We finally chose the surgeon in Chicago." In icy January chill, the
family flew to Chicago. Julie had an MRI that night and the next morning
was prepped and in the operating room. "We were in the holding
area--and the doctor rushed in and said, "You know, I looked at the studies
from last night and I don't think we need to do it!" The relief was
enormous." On the way home, the man formed a thank-you letter to the
surgeon--adding a comment on his experience with the medical profession.
"What does a patient do? I've learned that eventually, as a patient or a
parent of a patient, one has to have a certain leap of faith and say, "I'm
making the best decision I can." I wrote to the other doctors, telling them
that we decided to do a watch-and-wait approach and
     why. And I got a letter back from one of the doctors, who basically
said, "That is the wrong decision and you are doing absolutely the wrong
thing." And I was thinking, "I didn't need this letter! I'd finally reached
a point of comfort and he does this.""
     When Anna's friend recounted his eight-month odyssey of strife and
despair, she empathized but couldn't resist a rather triumphant comment,
"Welcome to my world. Now you know what it's like." The man was her
longtime oncologist, Ken Miller.
     Miller has to concede that Anna's point was apt; he now better
understands his patients. "We all read about serious illness and you see
television programs that dramatize it, and it's almost like a love story.
But most of living with serious illness is just that--living and the
day-to-day stuff, the dog to walk, the kids' report cards.
     "Anna's life is a profile in courage of a meaningful person and points
up all of the handicaps that people live with that don't go away," Miller
concludes. He is one of millions who witness firsthand chronic diseases or
disabilities. "My oldest daughter is deaf. It's not life and death, it's
not cancer, but it's a day-to-day issue that doesn't go away.
     "All of us would like the happy ending, and it doesn't always happen."
Miller pauses. "Thankfully, Anna's been able to live with this disease a
long time."
     Part III
     A New Level of Existence
     There's a natural order to the universe and I'm just a piece of that
order. ... As I die, something else will be born and on goes creation. ...
I feel like I'm one of the flowers that popped out of the ground and
bloomed and everything around me for a while enjoyed the bloom and whoops
winter came and the bloom fell over. ... It saddens me that I'm going
to miss out in some fun, but I don't have terrifying feelings about it at
all.
     Anna Johannessen
     CHAPTER THIRTEEN
     Anna's Choice
     On Friday, February 14, Valentine's Day, 1997, Anna tells a friend
that she has decided to quit chemotherapy. Her friend catches her breath.
This is a monumental decision and so she struggles for the right thing
to say. Finally she elects to do what they have done so often, keep the
tone light. "Are you being naughty?" Anna laughs and says, "Weellll, I
won't call it naughty. Let's say I've taken my brain to a new level of
existence. And that plain says, "This is bull! You've gotta stop doing
this!""
     A few days before, Anna's checkup showed that her tumor markers were
alarmingly elevated, now at a thousand. Again pain and anger heighten the
expletives. "I thought to myself, "How long should I stay on this drug,
which is so damn effing debilitating?"' If it were two years ago and I was
taking Taxotere for the first time, I don't think it would be so bad. But
as the result of having had so much chemo, my system just isn't able
to bounce back. This Taxotere experience is just miserable. I'm puking my
guts out. I want a drug holiday. I want to go back to last summer when I
stayed on that one pill, Arimidex. The cancer grew to some degree, but I
felt good. I felt like I could live. I feel that while I'm alive, I'm
alive, dammit. I'm not a piece of chemical crap running around. I started
thinking, "Why am I poisoning myself to the point where I can't function
anymore? I can't go from the bedroom to the living room." That's when I
said, "I'm not doing this anymore, unless there's a hell of a good reason.
I've had my ovaries out, I've done surgery, I've done years of
chemotherapy, I've been fighting, but I can't put up a fight if I'm so
devastated physically from chemotherapy." I'm going to
     have a heart attack; just carrying laundry up the steps, I get so out
of breath. That cancer's never going to get a chance to kill me because the
damn chemo's going to do it first."
     Anna cries. She tells Jan, "I want to be strong enough to take walks
again. I want my immune system to strike back." Jan puts his arms around
Anna on the sofa and says, "Life to you is not laying in a bed like that."
He sees Anna's deep depression as she fears being a nonfunctioning shut-in.
Her words slow. "I think this is the last year I've got and I don't want
to spend it three-quarters of the time in bed."
     On Monday, her blood count is so low, the doctors try to put Anna in
the hospital for a transfusion, saying it is a matter of life or death.
Anna explodes. "Give me my little shots, let me stay around my little germs
at home--we're all friends--and I'll be fine." Anna recalls, "They were
ready to slam me into the hospital, the worst place I could possibly be. I
realized then that I had to stop the madness. I want my body to be able
to still help command this fight somewhat. Once you get to the transfusion
stage, you don't have the tools."
     On Tuesday, Jan and Anna face Joe Kaplan in a tiny examining room.
Anna smiles brightly. He says, "Okay, you can't fool me. Suzanne told me."
Anna had discussed her pain with the nurse. "With these tumor markers going
through the roof, where is my cancer going?" responds Anna. "Where is it
going? I know where it's going." Anna points to her right side. "I've got
rib pain. It started two weeks ago and I waited to see if it would go
away." Kaplan asks, "Does it hurt when you breathe?" "Oh, yeah. Big time."
Anna continues, "I take my Percocet and I go merrily about my way. But I'm
curious, if this is getting in my ribs and lots of places, what can I look
forward to?" Kaplan tells her that while those ribs are not weight bearing,
Anna could end up with several fractures. He wants her to take radiation in
any weight-bearing areas. Anna tells him, "There's no way in hell I will
have radiation again."
     Now, this Valentine's Day, 1997, Anna ponders her choices as she gets
a bone scan. "I have to ask, "Gee, what healthy tissue is going to get
zapped in the process? What good stuff are we going to kill?"' From now
on," says Anna, with a grim laugh, "I'm looking at these trade-offs.
There's no odds in it the other way." She is dubious that Taxotere has been
effective, but the MRI, scheduled for next month, is needed for
     proof. Anna balks, refusing to take the third cycle. "This sure makes
me feel real crappy. What idiot would want to do this?! It is a very
logical decision. I think I'd be much more happy with that. Happy in one
way, scared in another, cuz you don't know what's coming up. Somehow, I
will find a way to manage pain."
     Anna says she wants definite answers on how long she has to live. A
major obstacle for dying patients is doctors, trained not to let go but
to try just one more treatment. Many cannot conceive of giving a terminal
patient--even one who prefers the truth--an educated guess as to how long
he or she has left. "But such information gives you some way to chart the
rest of your life. It gives you some road map markers," argues Anna. "There
is no way you have to buy it. You could say, "I'm going to show you, I'm
going to live three or four more years," but at least you have a way
station."
     For all her insistence on knowing, however, Anna admits she is as
hesitant as any patient to confront a time frame. "I'm not good at pushing
that, but I'm going to try. I think I can push it with Joe. Ken would be
Mr. Butterball." Later, Miller points out that in the past, Anna has evaded
definitive discussions. He had mentioned the option of stopping therapy
more than once after her cancer had metastasized, says Miller, but Anna was
not ready to hear it. "I first started bringing it up to Anna when two,
three therapies didn't work. Each time I said to her, "Anna, we've got a
couple of choices. One is that people always have the right to say, "I
don't want to do this anymore. I'm more interested in quality of life and I
don't want aggressive therapy." Or we could try a different type of
chemotherapy or experimental therapy." Most people aren't ready the first
time they hear that. Now Anna says she is at that point."
     She thinks it is the chemo that makes her feel bad, Miller is told.
"That's a part of it, yes. It's very, very hard when people are on therapy
and they don't feel well. You say to yourself, "Is it the disease? Is it
the treatment? Or is it unrelated? Is it a virus or some other process? Or
is it aging, or what?"' And the only way to find out sometimes is to give
people a break and if they start feeling better, then it was the therapy
that was doing it." When a cancer metastasizes, Miller is never free from
scrutinizing his treatment. "You can't help agonizing, and retrace your
     steps to see if there was anything different you could have done."
Anna's anger at the X-ray snafus is mentioned. "She was right! I don't
blame her. I was pissed off too, because we're depending upon our
consultants, our radiologists, and the lab to have things just right. But
thankfully I don't look back at anything with Anna and say, "Oh, my God,
this was a major screwup. This poor woman, her life would be different."
Thankfully I don't feel that way."
     Miller talks of the struggle and anguish doctors face at this stage in
an illness. "Over the years in my practice, I have noticed something. What
Anna or some other patient might discuss with friends and family may be
different than what they would ask me. It's a different experience thinking
about wanting to know when you may die and actually asking the doctor. It's
very difficult for the doctor also because when cancer returns, when
someone has advanced cancer, on one hand, you have to share information
about the seriousness of the disease, but on the other hand, I would want
to leave a ray of hope. I think it's fair to say to people, "This is a very
serious disease and many people die of this disease." But my belief is that
we have treatments that will hopefully help. I don't remember ever saying
to someone, "You're incurable."
     "When people do ask, "How long?"' I'll start off by saying, "I'm not
God and I don't know."" Ken then will add, if he believes so, "However, I
don't think it's going to be days or weeks, but it's probably not going
to be a year either. It's probably life measured in months. In terms of how
many months, I don't know for sure." This kind of answer provides a comfort
zone for those who, as Miller says, are "sick enough that they know that
things are not going well. Sometimes people will take it further, they'll
ask, "Well, how many months?"' And then I might say, "I think it may be
less than six." Sometimes I turn the question around: "I know this is a
hard question, but what do you think?"'" Ken does this with family members
who pull him aside outside the patient's hearing or who call on the phone.
"Usually the family knows or has a feel for this and they'll say, "I don't
think she's going to be alive by Christmas." Or "I don't think she's going
to be alive for the wedding." Or "I do think she'll make the wedding." And
so on."
     Miller remembers an unsettling experience early in his career. "A
patient forced me to give him an exact time; he said, "You've got to tell
     me, I'm not getting up from this chair until you do." And I said six
months. Well, he lived for eight months and he was mad at me for those
entire two months! That taught me a lesson."
     Speaking of lessons, Miller is asked if doctors are given any
preparation for the difficult, awkward, and emotionally painful task of
dealing with dying patients. "Very little," he says, "very little."
Oncologists choose a field that involves long-term interaction with
patients that may end with death. In recent months, medical training has
been excoriated for its neglect in teaching caring skills. "In medicine in
general, no one teaches you how to prepare people for this," says Miller.
"We don't take medical exams that go over how well you do the counseling
part, which is a big part of our job. There's no peer review for that. Nor
does a doctor really get feedback. The only feedback you get is from your
day-to-day work, your patients and families, and hopefully it's favorable."
     Another problem is that often doctors have to be mind readers with
patients who tend to minimize their problems when they go for office
visits. "Actually, I have had to say to Anna, "You know, you present
yourself so positively that you've got to remind me that you've got
problems. You need to be specific and tell me."
     "With every patient, your relationship's a little different, the
illness is different, their perspective on their illness is different,
their life story is different." He pauses. "Anna's life means a great deal
to me," he says as pain shows in his eyes. "I've known her a long time now.
She's about my age and her kids are about the same age as mine. Anna was
one of the first people I saw when I started my practice in a tiny little
office. I remember very well seeing Anna and Jan that first day."
     On February 18, "blood-work day," as Anna terms it, she forcefully
tells Ken that she wants to quit chemotherapy. "It's ruining the quality of
my life and it's not making me any better. I'm very serious about wanting
to have really a good quality life and I don't want to spend days lying in
a bed in so much pain from the chemo. I'm not saying I don't want to take
chemo ever again. But right now, there's nothing that we know of, let's
face it, that's out there that's really going to set off any bells and
whistles.
     "Why am I having all this pain?"
     "We could take millions of tests," says Miller, then gently, "but,
     Anna, we know. It's probably in your ribs and just not showing yet.
Let me take a look." Anna climbs up on the table; Miller lifts up her
sweatshirt and gently pushes on her ribs on the right side. Anna winces and
says "Aarrrgghh!" at the sharp pain. Ken tells her that the cancer may be
in new areas. Both of them feel that an MRI at this point won't tell them
anything they don't already suspect.
     Ken looks at Anna. "I know you have an agenda and part of my job as
your doctor is to help you fulfill that agenda."
     "Yes," says Anna, "and my agenda is that I want to enjoy myself. I'm
going to Florida in early April and I want to be strong enough to have a
good time. I don't want to be so drugged out that I take three steps and I
fall over. Ever since the NIH thing--I think it really whacked my immune
system--and if I just build my own body strength up, I'm going to feel a
whole lot better."
     "Okay," says Miller. "Let's take a drug holiday; I want you to go and
have ten days to just play. Then come back in and we're going to take your
blood counts." Miller assures her that "we can go back and revisit any of
this at that point."
     Anna says, "So if we find out in ten days that nothing's working, then
what do we do? What's out there? Not a whole hell of a lot. I'm not totally
averse to trying the 5-FU [an abbreviation for a chemo regimen,
5-fluorouracil], but I want to get stronger before I jump into it." On the
way out, Anna says, "But I'm sitting there saying to myself, "If I have
to wear the 5-FU bag and it's not going to work, what the hell for?"'" Anna
is happy that she doesn't have to make that decision right now and is
pleased that Miller agreed to stop chemotherapy. "What I need to do is just
get back to trying to be me. I'm trying to eat sensibly. I'm taking two
Percocets at night for the pain and I'm still doing the Arimidex." Hope, so
important for survival, remains, and it is not unrealistic. "They come out
with an alternative to Arimidex, I'll be first in line! The next pill that
comes along may be able to fool the cancer for a while and I may get a
respite again. Who knows? After these ten days, if the tumor markers are
still going up, I'm just going to say, "Okay, that's it. I'll call you if
I'm in major pain, now leave me the hell alone.""
     In her weekly conversation with her father, Anna expresses her
determination to rebuild her strength while off chemo. "He's still on this
     "you've got to get rid of this disease" kick. I tell him, "I'm
trying." I'm trying to make him understand that I'm not at all giving up,
that as a matter of fact, I can get stronger and feel better, that there's
no reason to be so sick from treatments. I think he does kind of get it.
     "I told him we were coming down and he was so funny. He said, "Well,
do you think you can play golf?"' And I said, "Dad, I don't know that I can
necessarily lift a golf club, much less twist my torso with the side being
so sore. But I might try. ..." I can still putt. I can go along with him
and he can hit all the long stuff and I'll be his putter."
     Ten days later, there is no improvement in the tumor markers. Anna
makes the decision to stay off chemotherapy. Instead of being depressed,
her mood is high. "Free at last!" she says a few days later. "Since this
decision, I have taken walks every day, I'm out there enjoying the day and
it's been so beautiful and wonderful. I'm tired, but I'm happy tired. I'm
liberated from taking the stuff that was killing me. I'm stronger now."
     Anna begins her next visit with Miller by saying, "Listen, I have
to bring up a subject I know you hate. I think it's getting to be the right
time to tell the kids. They're eleven and thirteen," she reminds him. "They
are beginning to ask questions--and they are going to ask in one way or the
other "When is it going to happen?"'" Anna fights back tears. "And I need
to give them some answer." She takes a deep breath. "I don't see me going
through '97. What do you think?" Ken replies, "Oh, I see you getting
through '97. But '98?" He finishes the thought with a palms-up "Who knows?"
gesture. Anna smiles broadly. "Great! I'll take your odds."
     The conversation leads to a much broader discussion. "I think she had
a lot of relief and so did I," Miller recalls. "It opened up conversations
that actually were very comfortable--but then Anna's a unique person. She's
so easy to get close to, so great to be with. I'm not sure that she shares
everything with me as much as she does with friends, and I have to give her
the right to do that. But I asked her something I've really never asked
anyone, well, maybe I have once or twice. She talked about the end of life
and I said, "Where will you go?"' She said, "I'll be on the Hale-Bopp
comet. Look for me." I've just been thinking and laughing about it. And
believing it too."
     Ken reflects on his years of experience with the dying. "Most people,
     I don't think, go through those stages that Elizabeth K@ubler-Ross
wrote about--they don't reach that point of acceptance and almost
spiritualism. Most people are probably getting chemotherapy until they die.
Or some type of therapy, because it's too profound to picture the end of
one's life."
     As a result, people often view hospice as death's doorway instead of
seeing the positive quality of life one can achieve with its palliative
care. Pain-free is their goal. Unlike patients who opt for continuing
futile treatments, Anna says it's how you live your life that counts, not
how many days you have. Anna raves about a book she is reading, Dying Well,
written by a hospice physician, Ira Byock, whom Miller knows from his days
on the Academy of Hospice Physicians board. "I love Ira and his work. He
and I--we all know people like Anna, but it's a minority. It's a very
unusual person who can talk about all this." For Anna, Byock's book
provides comfort and she is mystified by those who cannot respond with her
sense of practicality. "I couldn't put it down. The guy is a real
humanitarian and gives me information that's usable. It's not pie in the
sky. I've been trying to find out what's going to happen to me, what
happens to the inside of my body. And I've seen this only in hospice
books."
     At this point, Anna seems far from end-of-life decisions. "Anna comes
across as very, very functioning at a much higher level than she feels,"
says Miller. "So it is very easy to be fooled, including for me. But she is
active and is nowhere near that." During such a period, well-meaning
friends and family members often cannot gauge a patient's needs. Some, for
example, have urged Anna to get help in the home, instead of, for example,
lugging laundry from the basement. "You know what? She wants to," says
Miller. "And that's important. This is the living part, helping your kids
do their homework, that kind of stuff. If nothing else, it's a respite from
your illness when you get involved with someone or something else.
     "Generically speaking, there's a couple of things I advise my
patients. One is that they need to tell their family and friends what they
need. For example, if someone is getting adjutant therapy for breast
cancer, I think it's fair to tell their family and friends, "I don't have
breast cancer. I had breast cancer. I've had surgery and this is
preventative therapy." That's not ignoring the fact that it might come
back, but at that point,
     she's not a cancer patient. For someone with more advanced cancer,
they also need to tell their family what they need."
     For Anna, it is difficult to ask for any help. Miller smiles. "That's
probably how she's been all her life and probably how she will be. So you
know what? Let's celebrate that."
     For months, Anna has played out in her mind how and what she will tell
her children if and when her disease progressed. As she contemplated her
drug holiday in February, she wrestled with uncertainty. "Just last week,"
she recalls, "Ellery said, "Mom, when you kick this thing and you get
better, are you going to go back to work?"' And I said, "Weellll, I don't
know." I focused on the work aspect rather than "when you kick this thing."
It's not too far around the corner when we're going to have to have that
conversation. Again, I don't want to have it too soon. One of the things
I'm going to do is ask Dottie about that."
     In a household so open, her children witness their mother's ups and
downs daily, overhear her blunt phone conversations, develop deep concerns
and equally deep denial systems. About the time his mother is worrying
about when to talk to them, Ellery is having his own conversations. He
volunteers in a long-distance phone call that he is taking a stress course
at school. "No one in there is really talkative. We sit around and try
to talk about what is causing the stress. One kid got kicked out on
Thursday. We were talking about things that made us stressed and one girl
said that two years ago her dad died. When we were talking about her dad's
dying, he said, "Well, think about it this way, it's just one less human
being screwing up the world"--and me and a girl and another friend, we made
him go over to her and apologize." How did you do that? "Well, he had
some"--Ellery pauses for effect-- ""help." She told him off right then and
there. She said, "You're lying and you're a stupid, short idiot." And he is
short." What did the teacher do? "I know she's going to be talking to the
counselor." How did he make you feel? "It pissed me off. When we took him
over to apologize, he said, "That was a perfectly valid statement" and so I
said, "Then you're screwing up the world." He just, like, stood there."
     The group was asked to write down their areas of stress. Ellery wrote
"math" and "science" and then "My mom has cancer." On the phone,
     Ellery says, "Mom is in bad shape, you know." How does that make you
feel? "I just keep reassuring myself that they will solve the problem. Just
keep reassuring myself that nothing's going to happen." It must be very
hard for you. There is no response. Does Dottie relieve the stress? "Oh,
definitely. She makes me forget about everything. She's very helpful." Is
the clay wall helpful? "Oh, yeah." What is important about those times with
Dottie? "Just being with her, talking to her. The last time we were there,
we played the game called the Ungame. It's a talking game. You go around
the board, like Monopoly, and we discuss things. Like if you're having a
bad day, you go there, stuff like that." What is Dottie's ability to make
you forget the bad things? "She calms me down. A lot of times I get
panicky. She makes me not care about that stuff for the moment." Panicky
about your mother? "That's mostly what she talks about. She always assures
me that everything is just going to be fine."
     Later his mother says, "Dottie never says something that is not true,
that's just what Ellery wants to take from the meeting." Dottie adds, "You
never, ever lie. You never say, "Don't worry about it, things are going
to get better." But kids, like grown-ups, hear selectively. I can try
to let a kid down gently until I was purple. And if they don't want to hear
it, they're going to hear the tone of my voice as hopeful. If I use the
word "hope" in any way, that's what they latch on to. If you say, "I
understand how you really want Mom to get better," that can be interpreted
as "Mom's going to get better." You don't ever contradict and you never,
ever take away that hope." She points out, "Very few illnesses are
absolutely straight declines, so these kids have lots of reasons to believe
in miracles. You have a woman who had lots of metastases and the liver
cured up for a good length of time. That's unheard of! So there's lots of
medical reasons. Let them hang on to that. What would it accomplish for a
kid to have to say, "I know my mother's going to die." So what?! If it
clouds and messes up that day, that's one less good day that they have.
Everybody knows it! We ain't kidding. "I know that she or he is going
to die and I know after he or she is dead, I'm going to have to deal with
it. But let me now have this time to enjoy you. So it makes sense to allow
me to say, "Okay, put this little "know" in a bucket and leave it over
there." So you and I have this moment. And be fully in this moment."
     "Kids are extraordinarily bright, extraordinarily intuitive. That's
how they operate. That's what they bring into this world, before we beat it
out of them and teach them not to trust it anymore. They know. They also
know that this moment is precious."
     Ellery is now extremely protective of both his sister and his mother.
"Mom can never do anything she wants to do now. But we understand that and
help her out." Do you have some idea how or if your life is different from
other children's? "Yeah. It's really quite simple. We have a lot more to do
around the house." Has her illness made you grow up more? "I understand
more. And I have a better comprehension about all this stuff." He doesn't
verbalize how it has clearly sensitized him and made him more
compassionate, as demonstrated in his angry response to the cruel comments
of the hostile boy in his stress class to the girl who was grieving over
the death of her father. "I almost hit him," recalls Ellery. He and his
father are spending more time together, not talking about problems but
working actively on a science project. "I went to Dad's office. It was
great. Dad has a gram scale that can measure one-tenth of a milligram. We
got that scale and measured out fifteen amounts of yeast, one gram or
really close. ..."
     Ellery still stalls on projects and needs pushing from his parents,
but there has been no startling decline, although stress about his mother
has increased and his hormones are hard at work. Now twelve, Ellery is over
five feet seven inches, taller than his father, his body has slimmed, his
voice has lowered, a faint brush of mustache is visible, and, much to his
disgust, phone calls from girls have increased. In no way does he resemble
the short, pudgy boy of two years ago. Now in the seventh grade, Ellery is
doing pre-algebra on an eighth-grade level. "I have to go at this pace.
Otherwise I'll get bored." Computer games--"they're more powerful than
video games"--are Ellery's latest passion, as well as his old standby, TV.
"And, I watch," he says slowly, knowing it will get a rise out of his
listener, "violent movies." With that dumbfounding ability of adolescents
to do several things at once, like studying intricate homework and
listening to booming music, Ellery says, "I'm watching one as we speak.
Showdown in Little Tokyo." With the exasperation of a parent who has
experienced the same with her son, his listener asks, "What is so wonderful
about violent movies?" "I don't know." Then Ellery laughs, teasingly. "Hey,
it's a guy thing."
     CHAPTER FOURTEEN
     Telling the Children
     Dottie Ward-Wimmer comes to Anna's house on the afternoon of February
21, while the children are at school. The women hug each other and Anna
bubbles on about feeling much better. It is still a few days before Anna
returns to the doctors to find that she is getting no better and decides
to go off chemo permanently. Even without that knowledge, Anna desperately
knows she needs this meeting.
     "I think I have to tell the kids. I think it's time from signs I'm
just getting inside." Her run-on sentences and disparate feelings collide
into one another. "I'm not sure if it's time, oh, it's so scary to know
when the right time is! But there are a couple of indicators. Ellery has
said things to me like, "Mom, when you're cured, are you going back
to work?"' It really worries me that he's now in delusion land. A neighbor
and I were walking the other day and she asked how I felt and I said I was
better. She said, "I knew you hadn't been well." And I said, "How did you
know?"' And she said that she asked Lindsay how I was doing and that
Lindsay replied, "Oh, she's okay. She just lays around the house." And I
said to myself, "Man, I can't let this be the picture that Lindsay will
remember."" Anna starts to weep. "It just ... It can't be the picture."
     Dottie pats Anna's arm until Anna gains control. "I can't let them see
that. I mean, they're going to see that, but let them see that for the
right reason--that it's not the damn chemotherapy that's causing Mom to lie
around the house. Let 'em understand what it is for what it is. And I was
reading in this book--and they made an interesting point--that if I tell
the kids now, they'll have me to share their sadness with. I told Jan last
     night, "It's not fair not to do that. What happens if this thing takes
me out quick, because the liver can just go, and I'll be jaundiced and
three weeks later I'll be dead?"' The liver's already pushing around in
places, they think it may be in my lungs, and I said to Jan, "If this
happens quickly, they're going to be cheated out of knowing I was sick and
dying, and thinking instead that they could have done something, maybe." I
don't know what they would think-- levelwise, where would they be? But do
you think that's a good idea to tell 'em? I was thinking of telling them
Sunday, March ninth."
     Tears spring to Anna's eyes again and she laughs a hollow laugh. "I
thought, "We'll sit down Sunday and have a nice breakfast. We'll tell 'em
not that "oh, gee, Mom's dying," but that this disease, that we can't stop
it and that it might kill me and I'm fighting all the time and I've taken
all these drugs and I'm very weak and I need to get my strength back, and,
I mean, I'll walk 'em through what's going on. But the bottom line is I
know Lindsay's going to flip out and think she's going to die of cancer. I
can see the scenarios of fear that are going to come up in their heads--and
I can do so much to calm them down and I think we'll have some amazing
dialogues from that point on, especially with Ellery."
     Anna races on, almost as if afraid to stop and think about what she is
saying. "I think he's going to ask a lot of questions and he's going
to want to know things and he's going to feel a lot and I think he'll
communicate that. I think he'll be okay overall in the process because we
already talk about our feelings. Lindsay doesn't, you know, but I thought,
"What better time than us to sit down on a Sunday morning," and then we
would be prepared for ... And I don't know if I should call the schools
even and say, "Listen, if you see a behavioral change, let us know. We've
had some changes in terms of this stuff and the kids may be distracted,
they may be not all there for a while."" Anna gulps for breath. "But we
don't know how to tell them. I don't have a clue. Oh, my God!"
     Dottie steps in, reassuringly. "Nobody ever does. It's so much of a
process, it really is. And to say that you're going to do it on March
ninth, at seven-thirty in the morning ...?" She shrugs. "I can tell you how
some other families have done this and generally what seems to "work," and
I use that word in quotes because there's no easy way. But it is imperative
to have a real good sense of the core of what you want them
     to know. You need to be able to say it in two sentences essentially.
You can use more words, if you like, but you need to be very clear with
yourself what it is that you want to say. Are you trying to say that "I
need a break from chemotherapy because I need a rest?"' Are you trying
to say that "Maybe this isn't going to work?"' Or are you in fact trying
to say, "I'm probably going to die from this disease?"' It's real important
that you're clear inside yourself about the message that you want to give
them. Otherwise you'll be all over the place, because you'll start to say
something, you'll watch them get sad, and the mother in you will just
automatically back up and say, "But"--and you'll somehow make it nicer or
different. You have to know what it is you're trying to say to them."
     Anna replies, "It's going to be "I'm probably going to die from this
disease."" "Then you and Jan decide, Are you going to tell them separately
or tell them together?" "I want them to be together." "Okay, then you're
just real clear with them. You and Jan might even practice saying your
words back and forth to each other because those words will choke in your
throat."
     "I know. And I have to be able to say it, I have to be able to tell
them."
     "When the moment is right, it will happen. Just let it come to you.
And the time will come. Who knows, the sun will be shining, your kids will
be sitting there. They'll say something that is the perfect cue--and to let
that moment go by because it's not March the ninth!" Dottie rolls her eyes.
Anna laughs weakly and nods. Dottie continues. "Generally speaking, if you
can be open to those moments, you might find that, say, on a Friday
afternoon--where you have a weekend to process it and they have time to do
what they need to do and they don't have to take an algebra test the next
day--that's the right time. But if it happens on a Monday and they need
to take Tuesday off from school, that's fine. It's different in each
family, but it opens up those possibilities for a kid to say, "God, I just
want to be with Mom today." So you'll write him a note, so maybe he'll be
absent a few times, maybe his grades will take a nosedive. What he will
have--as difficult as it is to say to you now --are far fewer regrets."
     Anna jumps in. "They're trying to be caregivers right now as it is.
"Mom, can I get you this? Do you need help?"' And they don't know why. They
know I'm sick, of course, but they keep grasping on to this "when
     she gets better." We could be building a really big block of anger
here in that they're going to say, "You lied to us or didn't level with
us."" Anna remembers Phoebe's brother and the anger that his children still
feel for being told nothing about his illness. "I don't want to see that
happen. And I've got all these indicators that things are breaking down,
which is not a good sign. I've got blood in my stool, in my urine. I have
to be able to be ready, knowing how fast this can come. I want to be able
to tell my kids that this is the way it really is and we're all together
and we're all okay with it and we can work through some of the pain
together."
     Anna's urgency to tell her children is driven, in part, by her need
to control and affect situations while she is alive. "Jan and I talked
about it last night and he kind of went, "Ugh!" He hedged--" Dottie
interrupts, "And you will from time to time too." Anna rushes on. "I know,
I know. But then I explained to him that it wasn't fair. I said, "What if
this goes quickly and all of a sudden they're looking at me and they've got
so much pain and I could have shared it? If they wanted to cry? I could
have been the person holding them. We can't take that away from them." And
he said, "Wow, you're right!"" "Then don't take it away from them," says
Dottie. Anna nods. "If we go to Florida in the spring, we'll have a much
more meaningful vacation if those kids can think, "I may never do this
again with my mother; let's have a good time, make the most of it." And
they won't have regrets later, thinking, "Why didn't she tell us.""
     Dottie says softly, "Once the word "die" gets said, it's amazing how
you can then focus on living." "Exactly," murmurs Anna. "You're so right."
"This isn't about tolerating chemotherapy and how we're going to get
through it until Mommy gets cured," continues Dottie. "This is about
"Probably, at least that's what my body's telling me, I'm going to die from
this disease. It may be months. I may have another year or so. Nobody knows
for sure. I just want to be honest and real. And I want this time to be
spent with us being able to live in the best way that we can. And I can't
do that when I'm taking all these drugs that now we know aren't helping, so
I'm going to stop taking those drugs because I want to be able to live out
my time with you." And you'll cry and it'll be sad because the thought of
living only this much time will be sad. But you put it out there." Anna
sobs. "I know. I know. And I have to."
     "And in time, knowing your family, you will wind up in all
places--per-
     haps they will plan your funeral." Anna tries to interrupt, to tell
Dottie how much she will mean to the children during this time. Dottie puts
her hand up. "Don't talk about me, I'm going to be there, I'm going to be a
part of the mix, but it will not be the awfulness there is when you first
face it, because your life becomes the joy. And you are a life-filled
family."
     As tears stream down Anna's face, she says, "I'm so glad to hear that,
that's wonderful. That helps a lot. We'll practice. That's a good idea. So
I don't choke on the words and I don't beat around the bush, that's a great
idea, because I will otherwise."
     "You need to just put it out there. And shut up and just wait and see
what happens. And it will be a process--they may decide the next time they
see me that they don't want to talk about it and that's okay because there
has to be places where they cannot deal with it. School might be the safe
place for them to not have to face it. There are things to be said about
telling the counselors or the teachers, but we also need to honor Ellery
and Lindsay's need for what they can control. That's part of what's so
awful for you right now is this lack of control. The only thing perhaps you
can control is whether or not you're going to take the damned chemo."
     "That's right," says Anna. "That's my decision."
     "Build in some choices for them," recommends Dottie. "And you might
have to make decisions for them. If they're having a hard time at school
and the teachers are coming down on them, there's nothing wrong with taking
over your parental rights and saying, "I know you don't like this, but I
need to tell the counselor because we need to get something moving here.""
     "Well, Ellery's taking this stress class. He came home with a paper
showing areas or things that cause him stress. One was "My Mom has cancer."
Next to that was a plus and I said, "What's that for?"' And he says, "That
means we can do something about it mentally. I can think positively about
this." All I could think of was guilt, my guilt. It was good that he could
think positively, but I've contributed to that because I haven't told him
what's happening now."
     Dottie protests, "But that feeling doesn't have to change when it
moves to dying rather than chemo. You can think positively about how you're
going to choose to live your time. You can think positively about what this
time is going to be. They can do something about it because
     now they can decide, given this new information, if they want to spend
an extra hour with you. If they're going to give up a baseball game, I
don't know what, in order to take a day with Mom and Dad on a picnic, where
ordinarily kids this age would say, "Heck, no." It gives them a chance
to do something positive about how they're going to live this time out. I'm
not saying this is easy, I'm saying you don't have to give up all the
control pieces. It gives you different kinds of options and controls." Anna
repeats out loud, "Different kinds of controls--and you're right, they have
to have them too. Okay, we'll see how they do and see if they can
assimilate school. Maybe you're right. Maybe it's a safe place and they'd
do fine and it goes on."
     Again Dottie repeats her theme, knowing that in such a high-stress
situation people need the repetition and the time to reflect, in order for
it all to penetrate. Always she stresses asking the children their
permission before doing anything when it comes to their roles. "You'll talk
to them and you'll tell them. They'll get over the shock of hearing it and
one of the next things you'll talk about fairly soon is "How do you want us
to handle this with school? Do you want to tell your counselor at school?
Do you want us to tell the counselor at school?"' And they'll say, "No,
don't tell anybody," or they'll say, "Talk to them," or "I'll tell them,"
or whatever. You're not alone in this. Nobody's going to be alone in this
anymore. Not that you have been, you've been very good, your kids really
know so much. This is a new phase of it, a new part, and you've made a very
important decision that you're not going to leave them alone in this part."
     Anna nods. "Yes, and I don't want their fears to take over where
reality can be so much nicer and better. And I don't want to give them
false hopes and have them later say, "Why did you do that to me?"'" Dottie
smiles and touches Anna. "Do you know how courageous this is on your part?"
Anna laughs, embarrassed. "Sometimes I think it's selfish too. I want my
kids with me, I don't want them not knowing. I want them with me. ..." Anna
begins to weep again. Struggling through her tears, she says, "I don't want
them not thinking the truth. I just think that we'll be stronger and we'll
be closer and I can help more. I can help Lindsay and say, "Just because I
have this, you don't have to get this; let's make a list of things. Here's
how women prevent that breast cancer, Lindsay, here's what they do. Talk
to your Auntie Roseann; look, she's
     okay. Talk to this person; she's okay. This is what women are doing,
these are the good things you can do." My telling her may open a door she
can't open now--for her to finally express the fear that she thinks that
it's going to kill her. She's just terrified about it."
     "She may not be willing to open that right now," Dottie cautions, "but
you can give her all the information." Anna says, "I know." Dottie
continues, "When it's time. You can plant all the right seeds." Anna races
on. "Up to now, she's been thinking, "It's not really in my world because
Mom will be fine." And I'm going to get worse, I can't keep saying, "Oh,
I'm getting better."" Anna playacts an imaginary conversation, imitating
Lindsay in a "Mr. Bill" (from Saturday Night Live) voice: ""Gee, Mom, you
don't look like you're getting better, you're turning yellow!"" Anna
flutters her voice like a twittery old woman. ""Oh, it's just the jaundice,
my dear, nothing to worry about."" Dottie can't help but laugh. Anna
continues, "That's just terrible, not to be real with them."
     Dottie says reaffirmingly, "Yes, this family has too much style and
too much history with putting it out there to isolate you now. They
wouldn't even know how to deal with that. It's not what they're used to."
Anna shudders. "It's scary, scary, scary, but we have to do it. And I was
so glad Jan agreed. He's been a real surprise to me. I thought, for sure,
he was going to scientifically argue. Actually, he did say, in this quiet
little voice, "Well, why don't we find out about the 5-FU being placed
directly into the liver?"' I looked at him and said, "No!" He said, "How do
you know you won't have side effects?"' I said, "Honey, they can put it in
my liver, they can give it to me through my life port, it still circulates
through my system, it's going to get to my mouth and my vascular areas.
Just because they shoot it directly into the liver doesn't mean I'm not
going to get any side effects from it. Come on, you're the scientist!" He
feels getting off chemo was a very liberating thing. But he's still holding
hard to "Try this, try this," and I tell him I can't do it. I'm just tired
of being brought to the brink of death by chemotherapy."
     "It's interesting," comments Dottie about Anna's decision. "It's not
at all about giving up, it's about giving life a chance." She lets that
sink in and then suggests, "In deciding what to say to the kids--and of
course nobody knows; you could go on like this for years, you could go on
for three months--but if you can get some time frame from Ken, that can
     be helpful for the kids. Knowing that it's not an absolute commitment,
the kids will need something. And then you can go on to say, "We're
shifting our focus to accommodate that time frame.""
     "I've said to friends that the doctors didn't think I'd live this
long," recalls Anna. "I don't know if the kids ever heard that, but that's
one thing I can tell them. As you know, I haven't sat down and said
to myself or anyone, "Oh, gee, I'm dying." I'm just not like that."
"Exactly! What you're doing now is staying in their life. It's not saying,
"I'm dying," and go off in a closet. You're saying, "I still want to be a
part of their lives."" Dottie gives voice to an exuberant thought. "You
know what else we can do? Instead of coming down to the center the next
time, let me come here. Ellery's been wanting to do that for a while. Let's
do that, make it a bit easier for you. You can come down the next time, if
you feel like it, but let's do this in a way that honors your time.
     "I just realized something else. If and when it comes up with Lindsay,
this fear of cancer, a counselor at the center has beaten breast cancer
twice. Twice. Chemo. Radiation. The whole nine yards. Second clean bill of
health. I was thinking maybe I'd introduce Lindsay to her."
     Worries about Jan are discussed. "I said, "Be there for Lindsay, talk
to her, don't let this child go in a hole,"" Anna says. "She'll probably
work out a lot through dance, but Jan's going to have a really hard time. I
said, "Whatever you do, don't withdraw from those kids. You might have
to withdraw from everything else for a while to regroup. That's fine. But
don't withdraw from the kids, because they'll take it so personally.
They'll think, "What have I done wrong?"'" Anna says to Dottie, "I hope he
will talk to you. His nature is to not verbalize. He was very quiet last
night after we talked about this, and a few tears came. And then he
couldn't sleep. He got up and got on the Internet. And I went right
to sleep. I feel so much better. We've got this plan. I am thrilled. He is
so glad that you and I are talking. If we do this now, I can help deal
with the children. It may be a saving grace for all three of them."
     Dottie reassures Anna that she will always be there, either on the
phone or in person, and offers to come to the house anytime. "It's easy for
me to stop here on my way to work in the morning. And that's what this is
about. It's not about making schedules, it's not about regular therapy
time, it is about honoring your life and us just being there as you
     need it, as you want it, as you deserve it to be. You have so much
natural wisdom and experience and it's so helpful. And your example will be
taken to the next family," says Dottie, just as she has incorporated
previous stories to share withand comfort Anna and others in grief.
     Anna races on, avoiding the compliment. "I'm so glad you do what you
do and you're there. The kids just love you to death." "Oh, I just love
them, they are so precious. They are good kids." "They're very unique
people. I don't think it's just me, Mom, talking," she says with a laugh.
"They are unique in their own right--and they've got a unique dad."
     Faking an admonishing tone, Dottie says, "And you just can't take a
compliment. God forbid!" Anna echoes, "Yeah. God forbid!" They laugh and
hug. As Dottie gets ready to leave, Anna, almost lost in thought, mumbles,
"It's going to be tough, Lindsay's got a party Saturday night. ..." Dottie
edges in. "There's not going to be any right time." Anna says vehemently,
"No, but she's got outdoor ed [education]. She goes away Monday, Tuesday,
and Wednesday next week; they sleep over. I can't do it before she goes
away and have this fear or sadness come up out there." Her voice drifts
off.
     Anna is so cheerful the following week that it staggers a visitor. "I
feel like a different person. Mentally. And physically; I have much more
energy. It's been three weeks without chemo, I would have had it today.
Thursday I go in for blood tests, but this is the best decision I ever
made. I feel wonderful." There is a settled calm about her decision to go
off chemo. She had lunch the day before with a friend and drove in the
country. "We went to this great potter, Tatiana, who has fabulous glazed
stuff. Then on the way home, we drove along a little teeny diddly winding
country road and when I got home, I was green. I was so car sick. But it
was so great to be out." Anna is now about to pick up a prescription and go
to the grocery store. Chores that most people would find mundane irritants
Anna now looks on as miracle moments.
     Once again, she is back helping others. Anna is organizing and editing
material for a friend's disjointed thesis. And once again, she is getting
out of her own sorrows through curiosity; she enthuses about the theme
of the thesis as if it were her own --looking at children's understanding
of their own day care experience.
     Anna and her sister talk often now. At one point before Anna's meeting
with Dottie, recalls Roseann, "Anna was not going to tell the kids at that
time. I said, "Anna, they have to know. You've got to tell them and Dad.
They've got to know it's not playing out the way we thought it would." She
wasn't sure." Roseann worked on her some more. "There's a lot they're going
to have to learn. Each child handles it differently. It gives them time
to start working through this. They know I'm a survivor. Lindsay needs
to see that."
     By the end of February, Anna still has not found an appropriate time
to tell them. Meanwhile, Dottie's advice remains uppermost in her mind:
"Practice what you will say. Jan can be the kids for you and you can be the
kids for him. He has to say it too. Maybe not at the exact same moment, but
the time will come when he will need to say those words with them." At
night, the two of them sit in the bedroom and practice. Anna even laughs
now and then as she gets into it, distancing herself from the reality
by pretending it's role playing. "Hey, Jan, okay, what do you think of
this?" she says, lying on the green coverlet as he stands by the bed.
""Listen, you guys, there is something I need to tell you. I think I'm
going to die of cancer."" A wincing Jan protests, "No, no, no! That's way
too severe. That's too hard." Anna is now working on "something more like
..." She laughs. "I haven't gotten it all down. "Kids, for eight years, you
know I have fought breast cancer. I've taken every chemotherapy I can. I've
tried everything I can and I think the breast cancer is going to win the
battle and I think it's going to kill me." It's a little bit longer, which
scares me because I've got to be able to not crack up and cry. I've got
to be able to get this statement out of my mouth.
     "Dottie had a helluva point. "Make sure you know what you want to say
to them." I can't throw too many ideas out because that's going to confuse
them. So I've narrowed it down to "I've been fighting this fight, I will
keep fighting this fight, but I suspect the cancer is going to win.""
     In early March, there are two reasons--one frightening, the other
joyous--why Anna and Jan have not yet told the children.
     Anna's blood work reveals that she is severely anemic. She repeatedly
throws up and develops shortness of breath. Stumbling into the bathroom,
Anna sees herself in the mirror and screeches, "Oh, my God!" Jan comes
running. Anna hysterically asks, "What's wrong with my lips? Look at my
     lips!" To Anna, they look blood purple, even though Jan tells her
"they're completely normal." Anna insists that they must be infected. She
has lost so much color that her lips stand out in vivid contrast to her
chalk white face. Anna is inconsolable. "I'm finally starting to look like
a cancer patient," she sobs to Jan. "This really sucks. Obviously my bone
marrow can't produce enough red blood cells." Joe Kaplan, on duty that day,
looks at Anna and immediately schedules an all-day transfusion for the next
morning. Jan spends the day with her. Anna looks over at Jan and jokes, "I
vant to dreeenk your blood." Pinkness returns to her cheeks. Anna is
relieved that she hadn't given the children her speech before her collapse.
"Otherwise, they might have thought that I was dying."
     The second reason for holding off is Ellery's sudden comic fame. A few
weeks before, Ellery had an assignment that gave him three
options--to write and memorize an original piece, to memorize a dramatic
piece, or to memorize a comedic piece--and that had to be presented in
front of the class. Ellery's love of comedy inspired him to re-create an
old Bill Cosby skit on Noah's ark. In an at-home rehearsal, his mother saw
no inspiration as her son just spilled it out in a monotone, without
inflection. The project had become big competition, with every English
class participating in the three categories, challenging one another
for the title of "Best of Seventh Grade." The winner would compete with
those in the sixth and eighth grades.
     "Ellery won the first round!" says Anna, bubbling over. "Ellery is now
the funniest boy in seventh grade! They had to do this in assembly, in
front of huge masses of rowdy, wild kids. I'm just extremely amazed.
There's this whole other person. He's very self-assured." Anna has begun
to realize that her children have unknown lives. "I'm just totally amazed,
because he didn't do it at home. It's the same as when Lindsay played flute
solos in the fifth-grade band concert. I had no idea she could play all
these pieces. These are those moments when you realize your children are
becoming really independent beings. It smacks you in the face."
     It is March 7. "Tonight we're going to see Ellery perform for the
overall win. I can hardly wait," says Anna. "Tonight we were going to tell
the kids. That's not going to happen. This boy may come home with a trophy
and I'm not going to say, "Well, now that we've had our fun for the day,
let me pop your bubble.""
     The Johannessens scurry in out of a chill, driving wind to sit in the
audience, fidgeting while they wait for their son. Ellery again is
hysterically funny and beams as he listens to a new sensation--laughter and
applause rolling toward him. He places second, following an eighth-grade
girl who gave a polished dramatic reading. Ellery basks in new-found
popularity. "Everyone knows who I am," he says in wonderment.
     The big moment comes the following morning, a crystal-clear sunny
Saturday. Ellery gets up first and snuggles up to his mother on the sofa in
his "jammies," as Anna calls them, consisting of boxers and a T-shirt. Anna
has taken her usual position in the corner bend of the L-shaped sectional.
She wears an old robe over her pajamas and a green hat "to cover my bald
little head." She continues to praise Ellery for his performance. Jan
nervously sits, then leaves to take a shower. Lindsay protests loudly at
being awakened and grouchily moves over to the blue chair in front of the
bay window, wearing white pajama shorts and T-shirt. Jan has again
disappeared, to start a load of laundry. Anna decides she can't wait,
sensing that the kids will soon start to pick on one another.
     She clears her throat and begins her rehearsed, rethought, and revised
speech. "You guys know that I have been fighting breast cancer for eight
years now. Well, you need to know that I may be slowly losing this battle
and that I may die from this disease." She did not cry. "Whew!" she
thought. "I got it out!" As Jan moves in and sits at the end of the couch,
Anna continues to tell them how long she has fought, how her body is tired
out, that there are no new drugs for her, that the cancer is slowly
spreading. She says, "I know you kids aren't stupid and have been afraid of
this for a long time." No one says anything. Then Ellery says, "Get a liver
transplant!" Anna and Jan have to explain twice that she has too much
cancer to be eligible for a liver transplant, because he refuses to hear
it. "Why can't they do the transplant?" he keeps saying. Lindsay is slowly
curling up behind a favorite old stuffed toy, Forest the Bear, hiding, as
if shielding herself from the words. Anna looks at her. "Hey, this doesn't
mean you will get this disease, Lindsay. But you, like all women, will have
to check and watch that you don't--just like men have to check for prostate
cancer. Just look at Aunt Ro, who has beaten it!"
     Anna starts to tell them, "Now we can share this pain and deal with
     our fears together." She barely gets the sentence out as her tears
begin to flow. She asks Lindsay to come over by her. Lindsay curls up on
the left side; Ellery is on her right. All three are sobbing now and Anna
constantly kisses their heads and tells them, "I love you. I love you. I'm
sorry to cause this pain, but we have no choice and we will all have
to face this. This is all new to me too, and we will muddle through
together. I'm going to keep on fighting as long as I can." As they sob and
hug her, Jan, with tears in his eyes, moves over next to Lindsay. Through
her sobs, Anna tells them, "I am a lucky person because I have had such a
wonderful life with you and Daddy. Hey, you guys," she says, snuffling,
"what about Dad?" They turn to hug and cuddle with him as he sobs. Anna
urges them to say anything. "You can ask me absolutely anything about my
disease." But no questions come.
     Tears begin to subside and silence fills the room. Anna knows they are
finished, for now. "Okay," she says, "let's get on with it--we have a house
to clean!" Jan quickly repeats the call to action. Anna puts on a Candy
Duffler saxophone CD--"GREAT kick-ass music"--and the Johannessens start
to clean the cluttered, dusty house.
     CHAPTER FIFTEEN 236-237
     "I Want Wonder"
     Anna and Jan now go about the task of redefining their lives, once
again. Aims and achievements are more limited, but Anna remains positive.
More than ever, she embraces each day, clinging to the comforting thought
that she may get through the year remaining relatively active. Her pains
continue, but her days are filled with long-distance phone calls with
friends, lunches with those nearby, nights with Jan and the children,
various projects, including the final ballet performance of the season in
May.
     "I walk around the block and it hurts to breathe," she says, the week
after she tells the children. In addition to leftover nerve damage from
Taxol, the pain comes from her now-weakening bones. She pops Percocets, but
there is an incredible amount of energy and relief in Anna's voice. "It's
all on the table and I think that's a healthier perspective." Anna walks a
tightrope with her silent daughter, broaching the subject at times but not
overwhelming her. "Last night, I hugged her, saying I was sorry I had
to give her such bad news. She faded off into another world, but that's
very normal. It's her way of handling it. But she heard. I saw this
incredible sadness in her eyes. Ellery's finding his own ways to help
himself. I wouldn't be surprised if his grades go down."
     On occasion, Anna sees snapping tempers in her children, a consequence
of the tremendous anger they feel at her illness. "I make it very clear
that they can never blame themselves, which I understand children can do
for no reason, but I think I have to reinforce this." She is grateful that
"it is their nature to be self-centered at this age. If we can help them
     stay in that world, that's fine with me. And I am so glad we found
Dottie. When they're mad, they can now whomp on that wall."
     Anna continues to draw sustenance from facing situations head-on;
knowing all she can about her cancer, planning the next move, finding humor
in the situation when she can, help her fend off fear and panic. Practical
planning is part of her nature and the fact that at times she can also
distance herself by pretending it's about someone else remains a defense.
Still, she goes forth ducking nothing.
     One day, before deciding to go off chemo, Anna asks to take the
exercise on facing one's death --called Death Personalization--given by the
St. Francis Bereavement Center to prospective volunteers. Then she
carefully writes out her answers on the computer. The instructor begins
by telling everyone to sit comfortably, loosen any tight clothing, let go
of tension by repeating the word "relax" with eyes shut, then follows with
general relaxation techniques: "Feel the tension leave your forehead ...
your jaw. ..." Anna skips the initial exercise, in which she is to imagine
a doctor is telling her that she has one year at best to live.
Unfortunately, this is no fantasy for Anna.
     She proceeds to questions contemplating the final year: "How do your
friends and family respond to your illness?" Her answers reveal an
undercurrent of emotional pain--her melancholy at being the cause of
sorrow. "This disease is causing my family to fight their own set of demons
and it makes me so sad. I try to give them a sense that I have some control
over this disease. My husband just looks at me and quietly cries. His face
gets bright red and tears stream from his eyes. He vocalizes nothing. He
cannot talk about it, still. My brothers both express sorrow, but they live
in Florida and are removed from the day-to-day living with the disease.
They check up on me ... but they seem to be able to live with this because
they don't have to see me all the time. ... My dad talks about it but gets
all choked up because he is fighting the demons of my mom's death too. He
refuses to believe that this will kill me." When her father gets in the
"battle the disease mental state," Anna can tell over the phone that he is
crying. "It makes me so sad to see him hurt so very much. ... My sister is
fighting her old battle again. She just cannot admit that my case is
different and I may not be as lucky as she is. She wants to blame someone
     for our situations not being the same. She is driven by frustration
and anger and the pain I see in her face just tears me up. Sometimes I fear
that she thinks I am giving up. I just know the situation is different. ...
So she, like my dad, is in the fight mode--fight with everything I've got.
And I do." Anna feels that when she does tell everyone, ""I am dying of
cancer," they will believe me and probably be relieved that a long, fierce
battle that has drained us all will be drawing to a close."
     She mentions friends. "Most have remained true, close, loyal, helpful,
allowing me to vent my frustrations and allowing me to become a bit less
exciting. ... It can overwhelm some people, but none of my friends who are
close has abandoned me. ... They seem to be a tough lot and willing to give
of themselves to support me." The calls from Richmond and visits from those
nearby are daily. "My ballet friends and my few lady Jiffy Lube friends
have been marvels of support, letting me go on about illness, taking me out
to lunch so I still think I am a part of the human race. We talk about our
kids, husbands, the usual stuff. They all treat me normally and we carry on
about day-to-day things as though the cancer is not the center of
attention. It is wonderful! They still call to ask my advice on issues. It
is nice to know that friends don't associate my cancer with any mental
inability to function as I have in the past."
     The exercise asks, "If you had to choose only one person, whom would
you choose to be with you now? What do you want him or her to do? Does that
person know your wishes?" "As I die, it would be Jan. In his silence, I
find love, strength, compassion, and I know that he will put me first. If I
am decrepit, he will help me end all this with the least amount of pain
to my family. He is gentle, kind, and always giving. He would have made a
fabulous doctor. ... It will be the hardest thing for him, but he will know
how much I appreciate his nearness. As we have so often, we will lie in bed
and he will just hold my hand and stroke it. He demands so little of me and
I am so lucky that he has plain-out not rejected or gotten angry with me
due to the situation. It would be reasonable for a man, while going through
watching his wife ebb away, to be hostile and angry with her for making his
life so difficult and making his pain so hurtful. If Jan has ever felt
those things, I know they have never been channeled toward me.
     "I want Jan to try to help me die peacefully, without a lot of fuss,
with
     my mental faculties still intact, I hope. He cannot control that, I
know. He knows not to let me linger in a coma, brain-dead. He is aware of
my wishes for dying and funeral stuff. I want to be cremated and have a
celebration party of my life. I sure love life and enjoy all my time here."
     The exercise moves on: "Now that you are dying, what emotions arise in
trying to live your remaining time?" Anna writes about her "quite varied"
emotions. "I am jealous that I won't be able to be a continuing part of my
children's lives-- only a "past tense" reference. I hate that! So I am
living my remaining time trying to impress some guidelines, values, etc.,
on the kids so they will know right from wrong and remember what "Mom"
said." She comments on the question, "How do you want to live your
remaining time?" "My career interests are sort of dead. I want to travel
and see the world. I want to see the constellations on the other side
of the world and I want to do these things with Jan." Anna wants out of
life something that she has been able to produce in the past by virtue of
her personality and will. "I want wonder."
     Anna tackles such questions as "What has been the purpose of my life?"
"What is the meaning of it now?" "Am I satisfied with that meaning?" "I
feel that dying is part of the ever-moving life cycle--as one thing dies,
another is being born. Whether there is any "justice" to who dies and why,
I don't know--but I am happy with life. I believe my life's purpose was
to make people laugh and make them feel special." The knowledge that she
has done that for numerous people "has made me feel as though I have lived
a very full life; although the years will have been short, the life
experiences and personal rewards were quite ample. The meaning of my life
now? Part of me feels my job now is to go through this slow-death process
while filling my family with life! I want my kids to love life and see all
the wonder around them and appreciate what they have and who they are. ...
How I deal with this cancer day to day I hope will help them to see what a
huge sea of choices and positive choices they have! It sounds so
Pollyannaish, but I have learned that my approach and attitude generally
dictated how things went. We make our lives what they are. ... I really am
a "glass half full" person. As I consider these questions, I feel quite at
peace with myself. This sure is not the mission that I had set for
myself--thinking I would become some hotshot corporate ad executive (well,
I was a few times)--but I can still gain rewards."
     The questions get grimmer; the person is asked to visualize being bed
bound. "Who would be the main caretakers?" "Imagine loved ones as they
visit your bedside." Anna writes that Jan and the children will be the main
caretakers. "They will not be afraid to see me in this condition. ... I can
picture them coming in to talk to me, read to me, feed me ice chips, stroke
my arm, adjust my blanket, and caress my face. I can also see them hold
each other outside of my view, crying." When she summons them, what does
she want? "I would hope for a touch, which will be real and enduring--and
remind me that they are there as I drift off into morphine land."
     A question about dying is placed in the context of being very tired
and letting go: "... Just moving seems to take monumental effort--and
suddenly you begin to feel that it is time. Imagine you are standing at the
opening of a tunnel." The person is instructed to enter the tunnel and
"proceed at your pace. ... There will be a warm, bright light through which
images are visible. What do you see?" The person is asked to make a choice,
to go forward or return to life. "The tunnel spells relief!" writes Anna.
"It signifies joy and rebirth for me and everyone I leave behind, who can
now get on with their lives. ... I think I will see the essence of my
mother within the light at the tunnel's end. I have asked not to be
resuscitated, so hopefully, people won't be frantically working over my
body, so that it can be let go."
     Asked to imagine services, Anna writes, "I envision a memorial party
where people better be laughing about some of the antics I have experienced
with them. ..." For all of Anna's inner spirituality, she eschews religion
to the last. "I hope there is no religious person there who talks about me
--because I did not go to church. The Quakers have a nice thing where
people stand up and tell stories about the deceased. That would be nice ...
something everyone could share without some blow-hole giving a speech about
me when he or she did not even know me. I find that revolting." Her great
concern is that all of their friends will work hard at being with Jan.
     Anna's resistance to pain management unnerves those who want
to provide more relief, including Dr. Miller. During her discussions with
Dottie, the counselor manages to plant the seed for pain-free palliative
care. "Pain experts are really good at pain control nowadays." Anna sighs.
"I
     have to do something because I don't think my oncologist is really
tuned in to that. [In reality, Miller has suggested stronger pain control,
but Anna has resisted, fearful of being a drugged-out zombie.] I know
that's going to be my own stupidity--I let pain go way too long without
doing anything about it--and I will also think I'm doing something about it
and not have scratched the surface. "Well, I took two Percocets and it
still hurts, but it's a little better.""
     "The idea is to stop the pain, to find the rhythm of the pain, what
works for you, and to take it all the time," urges Dottie. "I'm not saying
you're dying tomorrow. I'm saying you have pain now. Start learning about
it. There's this myth that "If I take it now, it won't help me when I need
it." Not true. We can max out on aspirin, on nonnarcotic pain controls,
there's a limit to their efficacy. But there's not to narcotics. You just
keep increasing the dose. There is this myth; people say, "I don't want
to be a drug addict." That's crap. You're not an addict, you are physically
dependent. All that means is that your body gets used to having it in its
system and if you need to stop it, you have to wean yourself off it. But
you can. I've seen it many, many times because I did hospice for years and
people would have these remissions and they'd be on high doses and in three
weeks they're weaned off it. You're a drug addict if you take it because
you need to feel an emotional high. Taking it so that you feel no pain, so
that you can just live in this world, that's not a craving. That's very,
very different."
     Anna admits, "I have a stigma about going to morphine. It's my little
indicator that says, "Uh-oh, you're really sick now." It's a complete
psychological game that I play-- "Anna, once you go to morphine, that's it.
You're in big trouble now."" Dottie says soothingly, "Of course that's a
big step. It can say to people, "Uh-oh"--and that's what the movies do
to us--" Anna interrupts. "Well, I read that it takes about ten days for
your body to acclimate to it, and you have all these crazy effects and have
nausea and all--" "You may," interjects Dottie, "and you'll be constipated
and all of that. ..."
     Anna asks, "And then your body adjusts?" "Yes, then you get
acclimated. I work with hundreds and hundreds of kids, and I see them on
morphine and morphine derivatives literally for years. If you knew what
these kids were taking, you'd drop your teeth. As you learn more, you'll
     chart the rhythm of your pain and discover where the triggers are and
you'll know, for example, "Usually my hardest time is in the afternoon," so
you don't wait until you're miserable. You'll develop a pattern of popping
these pills in a way that gets the pain before it even starts." Anna
finally admits, "I don't do that--and it's terrible. I get to the point
where I can't move. I'm my own worst enemy."
     "After you start on a regular pattern, you actually wind up taking
less over the long run, because you're mitigating it," advises Dottie.
"You're getting it before it breaks through. Pain has a threshold. What
they look for in hospice is this place around the threshold, where a drug
works, doesn't give you all the sleepy crappy side effects and is also
effective. And that's what you're looking for."
     Anna startles her with a sudden query; "How do you know when to call
hospice?" "That's a good question. If you've made a decision not to take
chemo, then you might want to just call them and meet them and get some
information. I was doing hospice work before the feds were involved, we
were part of the team that people were introduced to when they were
diagnosed with the disease. Period. We were called hospicestspecial
services. We were just part of the support team. So when it got to the
point where they weren't going to be taking chemo or whatever anymore, and
they were kind of looking at issues of dying, they didn't have to be
introduced to strangers. They just saw more of us than they did of the
oncologist. Whether or not you were on chemo, our job, our responsibility
to you, never changed, to help support your living. But there are federal
regulations now, so I'm not exactly sure what the particular guidelines
are."
     Many in the hospice field decry the limit of six months in hospice
care--set not by them but by Medicare--which implies a death sentence from
the start. Studies show that some people thrive on the nurturing concept of
hospice and survive longer. (a larger picture of hospice, its pros and
cons, will be discussed later.) Anna asks, "How do you know? I don't know
if I've got six months to live or a year or what." "It's such crap," fumes
Dottie. "I can't believe what the feds have done to this. There is a
program out at Gaithersburg called Hospice Caring [which takes no federal
funding and therefore is not limited to six months]. They are simply
volunteers; they don't do direct nursing care--they pull in those services
somehow. You might want to investigate it."
     Anna wants more actual details about "what's going to happen--how my
body's going to behave." Dottie suggests a hospice expert might provide
that information or put Anna in touch with doctors "who are used to talking
about end-of-life issues and are used to being honest. Now is the time
to learn--and to consider getting yourself out of pain. If you want to live
your life, then do it as pain free as you can." Dottie smiles.
     Anna says slowly, "It makes a whole lot of sense. A friend of mine
gets on the phone and just cries and cries over this and I'm saying, "Pat,
it is what it is. I can't sit and cry about it." I think I'm really
lucky--I know myself and I've liked and been happy with who I was. I feel
sorry for people who get diagnosed with cancer and their entire lives have
been about what their accomplishments are, the money they made. You lose
all of that and if you have no other way to define yourself, you have
nothing. I didn't define myself that way. I was a pay-and-play person--if I
couldn't have a good time, I didn't care what I was making financially, I'd
quit and do something fun. And I am still doing it, not on as grand a
scale, but I can have a good time and share it with others. So the
pressure's off," Anna explains to Dottie, "I don't have all those angry
coulda, woulda, shoulda things hanging over me. Anything I wanted to do I
did."
     Dottie says, "You're still going to make jokes from your bed." That
pleases Anna.
     Anna's typical need for preparedness and consideration for others
prompts her to give advice about this topic to the readers of this book.
She titles it "All Sorts of Things You Should Do Before You Die":
     -- Don't wait, get your will done today and get it finalized! I may
outlive many readers, but my affairs are in order so that I don't screw my
family with having to deal with these issues as well. This is also a major
control issue. If you get your affairs in order, things are done your way.
If not, hey, don't bitch about it in your afterlife when cousin Gomer gets
your favorite leather coat that you wanted your nephew to have.
     -- Make sure the title to the car is out of your name before you die.
It is easier than making your spouse prove you are dead so that he or she
can get the title changed. [There are many horror stories about the trauma
of spouses having to reiterate the cold word "deceased" every time they try
to get a name changed on property or a bank account or to close a credit
account. For example, one top executive, shattered by the murder of his
sister by her estranged husband, found this exercise one of the most
invidious of his many duties as her executor.]
     -- Call and ask your banker what your spouse needs to convert the
checking and savings and all other accounts to his name.
     -- Find out what it takes for your spouse to get your life insurance
money and make sure your spouse has the information at the ready. I did
learn that you need to get death certificates from the state government
and, based on holdings and assets, your spouse may need an original death
certificate for every asset you have. The funeral home can arrange for
these to be procured quickly for a meager cost. Do it! Sometimes a Xerox
copy will not suffice and it can take up to six weeks to get death
certificates from the state, whereas the funeral home can do it within
days. There will be enough unforeseen burdensome things for your spouse, so
get that taken care of.
     -- If you don't want to be hooked up to machines, then get your living
will done, witnessed, and keep it in a prominent place with you, your
doctor, and your mate. The scary part is that once the hospital guys hook
you up to life support, they cannot unhook you easily--even with the
documentation. You need to be sure they see the documentation before they
attach you to life-support stuff. Make sure everyone has the paperwork on
your living will wishes.
     -- If you are on disability and did not provide for your kids, do so
immediately. Take some of your disability money and put it into their bank
accounts. After you die, your spouse will have a much easier time having
the rest of your disability money switched over to them.
     -- Be nice and while you are mobile (or someone in the family can),
clean out your junk. Don't let your family have to deal with all of this as
well. This is not the nice things that you want them to have--this is the
real junk!
     -- Make your own funeral arrangements. You can do this by discussing
the arrangements and writing down the instructions so that
     your spouse does not have to do anything but follow them. You can even
go so far as to write down the deal with the funeral home and put funds in
a joint savings account for you and the funeral home. I am not going that
far. Jan can write the check because he may want to do stuff that I don't
care one way or the other about.
     -- Write all this down so that your spouse has a list of what needs
to be done and how to do it. Write out a telephone-tree list so that your
spouse knows whom to call when you die. Each person he calls can be given a
list of others to call.
     -- If you have children, hopefully you have begun some sort of
counseling process before you die. If not, try to do so--so that the
process is under way and your children already trust another person and can
continue talking with him or her. You may suggest this to your spouse as
well, with or without kids. Each family must decide this, but from my
experience, having a bereavement counselor in place is wonderful--someone
to whom my kids can display their fears about losing me. They try to be
brave with me, but they need someone who can allow them to be vulnerable. I
had no idea that they would act like this, hence the relief to have a
counselor!
     -- Make sure that you and your spouse have decided what would happen
if he or she were to die suddenly, leaving the kids without parents. What
relative would take them? Have you asked that relative, in case? Have you
and your spouse figured all of this out? In our case, this is a weird one
because it will depend on the age of our kids at the time as to what
relative we would have them be with. [It is comforting to the disorganized
to know that Anna is not perfect.] We have to get this done in writing
yet--but we will!
     Anna drives down to visit Lockie in Richmond, in mid-March, soon after
she tells the children about the extent of her cancer. After the
two-and-a-half-hour ride, she walks with difficulty as she approaches
Lockie's house. Lockie lives alone in a charming cottage-style house--Anna
says that it looks like a gingerbread house. It reflects Lockie's artistic
talents as well as her immaculate order-- bibelots on desktops and end
tables, a rich apricot Oriental rug, an interesting stained-glass
windowpane, artfully draped airy cream-colored swags over bay win-
     dows. In Lockie's beautiful backyard, yellow and violet flashes of
spring flowers glint in the pale sun of early spring. "You're at least
three weeks earlier than we are," remarks Anna. Her enthusiasm revives and
she raves about Lockie's recently completed guest bedroom, especially the
handsome maroon-and-gold draperies and bedspread, mixing plaid and print in
perfect harmony.
     Over a gourmet dinner, excellently prepared by Lockie--a roast, fresh
vegetables, salad with fabulous homemade dressing, a decadent dessert--the
two of them reminisce about good times, but Anna eats little. Although she
carries on, her face is pale and she becomes quiet, about the only sign
to indicate that she is in pain. Anna rallies in Lockie's bedroom as they
hoot about an old dress that Lockie drags from the closet, but this weekend
is a strain. Lockie looks sad as Anna--the one who kept parties alive for
hours--goes to bed early. Anna, nonetheless, is content to be with Lockie,
knowing that her longtime pal is so in tune with her that she will
empathize, without being maudlin. As Lockie putters in the kitchen the next
morning, making coffee, heating homemade bread, Anna leans against a wall.
"Wow, I'm really hurting." Lockie says, "I'm glad you can be here with me
while your hurting," patting her arm as she passes by. Later Anna remarks
that "Lockie had a hard time learning how to open up. There's a
night-and-day difference from when we met."
     Lockie knows every detail about Anna's condition and is aware that
Anna has told the children. Lockie's eyes swim with tears and, as she
blinks, they fall on her cheeks. "That's probably touched me more than
anything else." There is a long pause as she struggles to control tears. "I
pray a whole lot. And I cry a whole lot with my mother. And try not to be
selfish about myself." Anna says softly, touching her, "That's what
grieving is for, feeling sorry for ourselves and healing."
     Wayne joins them that noon for brunch. He hugs Anna, standing in line,
and cheerfully says, "How ya doin'!?" Anna leans against him and says in a
whimper, "I'm hurtin'." He holds on to her as she says, "I've been better."
Wayne looks at Anna's black turban with a white sash tied to one side, one
of those numbers created for cancer patients that passes for feminine
headgear. He seeks to deflect: "You look like a nun." Anna flaps her arms.
"Just call me Sally Field."
     As they sit in a booth, talk turns to a favorite song Wayne had
written, "Life Goes On and I'm Okay." The week before, Anna had cried when
she hummed it in the shower. The trio mumble over the words, not certain of
them anymore. Anna looks at Wayne, laughing. "You're the music maestro for
my funeral, so you have to get it right!" Wayne picks up her mood and
intones, Martin Luther King-preacher style, "And in death, she reaches out
and says, "Play the damn song!""
     After lunch, Wayne drives over to their impressive studio compound and
sits in his white Mustang Cobra in the parking lot, talking about Anna
while she goes into the studio with Lockie. "Lockie's been much better at
staying in touch. Anna is just incredible. Anna is engulfed with this, and
at the same time, she is taking classes in film editing! Just like when I
was up there earlier this month, she waited until the kids were gone and
took me aside. She and Jan were crying and Jan said, "Anna's talking to the
kids." I remembered back--my mom died of cancer when I was young and it was
all "trusting the Lord" and I was never given an option to deal with it
while she was alive. Anna decided to allow her kids to have the option
to grieve, be angry, whatever, while she is here." Wayne sighs, then says
positively, "Today will leave its mark. I see the way the two of them are
dealing with this and it helps me put perspective in my life. Like "big
deal" about work--"God, that's a problem!"" he says derisively. "When she
first said for me to get the songs that "I want played at the funeral," I
didn't know what to say. Jan said, "Yeah, we can do that." The longer I'm
around them, the more I realize it's not macabre. It's logical. Why not? I
hope that's the way I'd be. You have an option to wallow in it or do what
you can to realistically face the future."
     Nonetheless, Wayne was terribly upset when Anna told him she was going
off chemotherapy. "If you go cold turkey, what can you be doing to put this
thing in check?" he had asked her. He listened to her explanations about
how it was a positive move. Now Wayne says, "Just look at her a year ago.
She was so beautiful, her hair grown back. I never told her, "You look
good," or "Look at all that beautiful hair." I was afraid she was going
to lose it again and I didn't see any reason to equate her esteem with a
physical thing. It's Anna that matters, not her hair."
     Wayne gets out of his sporty car and enters Mainstreet Productions,
their successful visual production company. It now takes up 10,000
     square feet spread over three buildings. In one exquisitely decorated
office, Wayne leads Anna over to a coffee table. "Now time to give you a
present." An intricately carved crushed-marble elephant about a foot and a
half high sits there. Anna's eyes fill with tears as she hugs Wayne, who
wraps it and lugs it to her car. It remains prominent in her living room.
     As Anna leaves that afternoon, Lockie hugs her hard, worry clouding
her eyes--but only when she holds Anna so close that she is sure Anna
cannot see her face.
     Four days later, Anna visits Dr. Miller. She remains jaunty and
bantering with the nurses and aides. Miller walks in with her bound
records, the size of a Manhattan phone directory, and lugs it to a counter
as Anna's barrage hits him: "Hey, things are looking good. I just want you
to order me some more Lortab [a liquid painkiller Anna uses to augment
Percocet]. I'm finally doing pain management. Instead of taking two
Percocets every four hours, I take less, every two hours, and that keeps
things pretty pain free." Anna's tendency to paint the brighter picture is
an edited version of reality. At times, she doubles over with pain from the
liver tumors.
     But Miller is not fooled. He suspects that Anna is popping Percocets
like MandMore's. "I've got another plan," he says pleasantly. Anna
protests, "Oh, no ..." He puts his hand up in a "now listen" gesture.
"You're not getting enough relief. How about a long-acting medicine?" Anna
looks at him dubiously. "What's happening with your pain now is that it is
up and down, up and down, all day long. You can have choices, a patch or MS
Contin in pill form." MS Contin stands for "morphine sulfate continuous."
When said fast, it sounds like MS Cotton. Ken makes Anna smile, telling her
that that was what he thought his instructor said "in my green first year
in med school. These medicines can give you relief all the time by taking
one pill only twice a day."
     "Can I drive?" asks Anna. "Will I be completely here--not out of it?"
(anna's onetime experience with a large dose of morphine made her throw up
and feel woozy.) Ken carries on. "Over the weekend, why don't we start
with the lowest dose? I can promise you that you will need more. It's not
going to help that much, but I want to start at this dose so that hopefully
you will feel comfortable taking it." Anna swallows. "I
     have this mental block on morphine." "Percocet is in the same class,"
emphasizes Miller, "but this is a better drug. It's very good!" Recognizing
that he sounds like a spielmeister, he jokes, "I have stock in the
company." This brings a small smile from Anna. "Seriously, wouldn't it be
great if you only had to take two pills a day? We'll start with this really
low, baby dose," he keeps emphasizing. "If it is not benefiting, call me on
Monday." [This is Thursday.] Anna resignedly agrees. Ken offers, "You can
still take Percocet for breakthrough pain, but with the right dose, ideally
we can handle the pain."
     Anna says, "I can't take a breath without pain." She wants a direct
answer. "Is the liver functioning?" Miller looks at her recent blood tests.
"Your liver is functioning slightly above normal--but not that bad." He
motions to the examining table. Anna says, "My whole right side feels
pooched out." Ken raises her sweatshirt and lowers her sweatpants at the
waist and gently presses on her liver, a procedure he has performed
countless times on Anna. "I think it's enlarged, all the way to the
center," says Anna. "You're right," says Miller. Nothing more is
said--there is nothing more to say. Anna's thoughts have been confirmed.
Anna and Miller hug good-bye, she takes the prescriptions and heads for the
drugstore.
     Anna's spirits are high as she marks the days off until they leave for
Florida at the Easter holidays. She looks and feels better than she did in
Richmond. She jokes that life is now measured around her constipation--the
latrine humor is another way of coping. As she and a friend stock up on
laxatives at her drugstore, they are hysterical over the array of bottles
and pills.
     One afternoon, Anna stretches out on her bed to talk. Lindsay gets
testy and stomps out of the house with two tugging dogs when Anna asks her
to walk them. No matter the level of her worry, Anna fights for normalcy.
Later, she comes up to Lindsay and makes a whimpering puppy noise.
Lindsay's mouth curls up. "I'm sorry, Mommy, but I was right in the middle
of my homework. Sorry I was grouchy." Anna deadpans, "I hadn't noticed."
They laugh together.
     The afternoon of her visit to Dr. Miller, Anna feels energetic enough
to make dinner. She prepares a new recipe for chicken breasts with herbes
de Provence, potatoes, asparagus. "I'm just so glad there are nights
     when I can fix dinner and Jan doesn't have to." Lindsay enters wearing
pale pink lipstick, and light eye makeup, with glitter on her lids. Anna
admires the look, realizing Lindsay is into preteen glamour by now. "Mom,
do we have any nail polish besides light pink?" she says, making a face.
"What color did you have in mind?" "Blue!" Anna gives her a look. "Honey,
those colors look so tacky." Lindsay returns with pink fingernails with
sparkles on them.
     Jan comes in late, tired. He had been working hard on a cohesive study
covering needed changes at FDA and had presented it that afternoon at a
conference. The children talk about school, then grab dessert and race
to the rec room. Jan listens as Anna tells him the details of Miller's new
treatment for pain. Jan has agonized over Anna's refusal to better medicate
and encourages her to use the morphine.
     After dinner, Jan plugs in the computer at the dining room table to do
even more work. Queen bellows up the stairs on a 1975 record that Lindsay
plays on an old phonograph. "Can you believe my daughter likes Queen?" says
Anna. Lindsay shouts that she has found an ancient Beatles record of "Hard
Day's Night"--"not even opened!" Her father raises his voice so she can
hear, "Put it back." "Why?" "Because I said so." Jan is stressed, tired,
and so worried about Anna that he is in no mood to jolly anyone.
     Anna moves off to the bedroom. Jan leaves his computer and goes in
to help with her pain medicine, to hug her, and to give her a kiss good
night, again, as always, wondering what Anna's next day will bring.
     CHAPTER SIXTEEN
     April
     It is April 1 and Anna and the family are relaxing in Cocoa Beach,
after the long drive. Sitting by the pool, Jan escapes into a Patricia
Cornwell thriller while restless Anna, dissatisfied with the neglected
poolside Japanese garden her mother had planted, pulls weeds. She has lost
twenty-seven pounds recently, but her sculptured face and visible
cheekbones provide a new form of beauty. She leans back and seeks the sun.
This time her hair has grown back sparsely so that it resembles the fine
fuzz of a gosling. Ellery and Lindsay are out back, on the wooden dock
by the canal. Both are anxious to "do something." Lindsay's buddy, who
lives across the canal, is away, much to her disappointment. After some
nudging, the family go to the beach.
     Anna and Jan walk very slowly, arm in arm. Lindsay and Ellery dart in
and out of the water like human sandpipers, racing on the hard sand, but
keep running back to their mother to walk the slow walk with her. Although
they now know their mom may not beat cancer, they choose to avoid it. Only
Ellery alludes to the possibility of life without her, being sure to use
the qualifier "if." Staring at his feet, which are sucking up sandy water
with each step, he comments, "Mom says that if anything happens to her, she
wants us to get Dad down here to live. Grandpa really loves him and Dad
loves this. So do I. I would come in a minute. It's paradise, plus the
cousins are here."
     Young Ellery is not alone in the use of softening euphemisms;
countless numbers of grievers do so. Last year, his uncle Steve avoided
directness in his conversations about Anna. "If it turns out the way we
don't
     want it to ... if something did happen to Anna ..." Euphemisms for
death are legion--people don't die, they "expire" or "pass away" or are
"called home" or are "with the angels" or, in a vague imprecise status, are
"no longer with us." Death is called the Big Chill. There are euphemisms
with shock value--"kicked the bucket," "bought the farm." A man used
to rolling with the punches, Richard Rymland, nonetheless gasps years
later, remembering: "When my mother died, the nurse called me. "I hate
to tell you this, Richard," she said, "but your mother just conked." She
was a Caribbean woman. To her, that was how they talked about it."
     Explaining why such evasions survive, J. S. Neaman and C. G. Silver
write, "The motives for euphemizing death are in many ways similar to those
for disguising references to pregnancy and birth. Great superstition
surrounded these events, as did great distaste and a sense of social
impropriety. Propelled by these feelings, we have attempted to strip death
of both its sting and its pride--in fact to kill death by robbing it of its
direct and threatening name." *1
     Later that afternoon, Anna's father is happier reminiscing than he is
dealing with the present. Stephen laughs. "I guess Anna was on the edge of
being a bad girl. That's secondhand knowledge from Audrie and by that time,
it was usually a call for enforcement. Seems it was mostly staying out
late, smoking, drinking some. We didn't like it, but it was never to the
point where we had any great concern. Audrie knew more--she had eyes in the
back of her head." Did you feel like you were the absent father? "With the
first two, yes. The other two, Audrie made me be involved, read to them and
play games with them. And I did. Bored as I might be." He laughs. "Well,
they all turned out okay. I just love 'em all. Every chance I get. Like
most ethnic people, we would have liked very much if our kids were even
interested--but our kids never once wanted anything to do with the word
"Armenian." It didn't bother me, but we thought that if they met nice
Armenians, it might make a very stable relationship." Anna's marriage is a
"great match," he adds beaming. "Jan's such a beautiful kid."
     The Armenian religion was not followed, however. "Audrie used to take
the kids to an Episcopal church Sunday school. Armenian? No! You could fall
asleep just staring out into the blue. The constant "yuda, yuda
     da da." [His voice goes singsong.] Constant intonation for hours." Do
you think religion is a comfort for people going through horrible times? "I
think so. A lot of people go into religion because it's another means of
coping. To me, religion is a sop. You can just kind of forget about the
problems."
     Anna's disillusionment with religion came not so much from parental
attitudes as through experience. As she walks through the room, she
interrupts. "I was thirteen years old, a confused kid about protocol, and I
called this young Episcopalian priest Gary--instead of Father Gary. His
father was also a priest and I just got mixed up. He actually swore at me,
he got so mad! It all seemed so wrong and unfair."
     The Megregians are like many who practice no form of religion and rely
on an inner spirituality of caring and giving, yet vast legions of people
derive consolation in prayer and religious beliefs. After Anna leaves the
room, Stephen is asked how he personally handles Anna's impending
death--what comforts him instead of religion? "I just cry. She told me the
first night down here. The only thing I can do is just sit here and wait. I
realize what the inevitable will be, but I hope she can beat it somehow. I
feel so bad that she's gonna go. When she told me she was on morphine, I
thought, "Oh, God, they haven't been able to stop the damn thing.""
     Stephen fights to control his voice as tears spring to his eyes.
"Those kids are so young--they need her so." He remains grateful that Anna
has been able to guide her children during the past crucial years. "At
their age, I think now they're going to have enough sense to know what
to do, and I think their father will keep them on the straight and narrow
too." He takes a deep breath, eyes brimming again. "She's been such a
wonderful mother, unbelievable. She looks stronger today than when she
first came down." Yet Anna's father takes little comfort in this. His voice
is barely above a whisper as he sinks into sadness. "I expect this will be
her last trip down here."
     That night, Stephen takes them out to dinner, a form of pleasure he
has enjoyed for years. But now Anna is having real difficulty eating. She
picks at her food and can only ingest small amounts. Even so, she sometimes
throws up spontaneously. By seven o'clock the next morning,
eighty-one-year-old Stephen has already left for the golf course. The
children sprawl on the den floor, watching television as Jan fixes break-
     fast. Anna keeps up banter as she glances at the TV. "Would you look
at those clones?" she says, watching what passes for daytime news. "They
all look alike, cloned from Ken dolls." The movie Tammy and the Bachelor is
on one station and Anna warbles the theme song. As channels are flipped,
the fare goes from bad to worse. Anna cracks, "We're experiencing technical
and mental difficulties."
     Lindsay has been working on her mother for several minutes about
having some candy. An angry Anna says with finality, "This is getting old!"
Lindsay protests that Anna said she could have some if she asked. "I never
give an open-ended answer like that," Anna says, firmly. In another room,
Jan and Anna exchange one of those parental pacts that take seconds. "I'm
not going to put up with this," she says. Jan is in total agreement. The
next time Lindsay asks, Anna says, truthfully, "I threw it out." Over the
noise of the TV, Jan commands, "Turn it off." In the silence, Lindsay sighs
and says, "Anybody for cards?" Ellery says, "I will," and a halfhearted
game of Go Fish starts while breakfast dishes are washed. Energies are
released with a walk on the beach. In the afternoon, Ellery and Lindsay beg
for a trip to Jungle Village, the land of go-carts, putt-putt golf, and, of
course, money-gulping video games.
     Anna quietly leaves and curls into a fetal position on a bed. Jan
brings her a morphine pill and also drops into her mouth a small amount of
liquid Lortab, which cuts the pain fast. Jan strokes her on the head and
arm and gently takes off her glasses. "Is it okay if I nap for about twenty
minutes? I just want the pain pill to kick in." "Sure, honey," says Jan,
turning off the light and closing the door. Lindsay hovers. "Should I take
Mom some Jell-O?" "No, honey, she's sleeping." Barely twenty minutes pass
before Anna walks out of the bedroom. "Okay, guys. I'm ready to go."
     Thirteen days later, Anna is back in Olney, getting ready for a fancy
dinner at Nora's, a chic restaurant in the District. She has lost another
seven pounds, and is almost ethereal in her beauty as she walks into a
small banquet room to join sixteen people. She and Jan are guests of the
Hospice Foundation of America, which is sponsoring a teleconference on
prolonged illness the next day. Anna is a stranger to most, yet her
incandescent smile and effervescence quickly charm everyone. She wears an
     avocado-colored silk pantsuit and a cream-colored silk blouse. A
crimson silk scarf shot with gold flecks catches the light, as do her gold
dangling earrings. There is a trace of pink lip gloss. Her hair is still
thin but confidently uncovered. She looks terrific and several women tell
her they admire her not wearing a hat or wig.
     Over dinner, she talks animatedly with Dr. Ken Doka. Knowing about her
cancer, he had resigned himself to an evening of hard work, wanting nothing
more than to relax. Afterward, he burbles like a love-struck teenager.
"She's extraordinary! She talked about her illness a bit--she is so unusual
to be so frank and open --but soon she was talking about other things, and
drew me out about my work and so forth." Other guests marvel as, even at
this stage, her luminous spirit eclipses others. Says Doka, "It took me a
few days to think, "Oh, my God, this wonderful woman who lights up
everything is dying.""
     An equally easy conversationalist, Jan talks to the others with quiet
assurance. He is now facing the depth of Anna's illness and for a moment
lets it show. He talks to a friend about the fun he had performing in the
Nutcracker ballet last Christmas. "But then I go backstage and I see
Lindsay--" Jan cannot finish the sentence. His head goes down, elbows on
the table, chin resting in his hands. He blows his nose and wipes at tears.
Anna notices, and later surmises that "Jan's terrified about how he is
going to handle Lindsay, how he is going to get her through this." In fact,
she is wrong, as Jan explains later in detail. "The Nutcracker was a very
difficult time for me. Learning the parent's role was fun, but during the
second act, I spent a lot of time in the wings, helping and watching. When
I first saw Lindsay onstage, with her full costume and makeup, being such a
lovely young lady, I became very angry and upset that her grandmother
couldn't be there. I remember Audrie telling me that her greatest regret
was that she was not going to live to see Ellery and Lindsay grow up. She
would have given all she had, all her professional accomplishments, all her
awards, to be able to see that. It was such an injustice that she missed
out on that wondrous scene. I had a very hard time watching Lindsay; I
suppose it was compounded by knowing that Anna probably wouldn't be seeing
next year's performance. I cried every night as I watched."
     As April rolls on, Anna continues to worry about Lindsay--"so quiet,
     so into denial. And yet just a few days ago, she asked me, "Mom, how
do you get cancer?"' It was out of the blue, and direct, but with a little
trepidation. She wouldn't look at me when she formed the question, but she
would when I talked to her. I told her that all cells reproduce and as
cells reproduce, all they have to do is reproduce a little bit wrong and
these are called mutations and they can become cancer cells. I told her
what kinds there were--breast, liver, prostate, stomach, and so on. I said
we don't know if it is because of the environment or that people are living
longer and getting more cancer, but everyone has to be careful and keep on
top of it, with exams and so forth." Anna ponders the sudden interest.
"When I told her about how bad things were with me, she never even
acknowledged it. Never asked one question. Maybe now a couple of her
friends are saying something or their mothers have asked, "How is your mom
feeling?"' Maybe this has caused this search for knowledge."
     Lindsay can pout, and, as a preteen, there are natural changes,
rebellion. Anna notices she is "getting snappier quicker." Jan is quick
to anger if he thinks Lindsay is stressing out Anna, but no one has ever
said for her to be better because her mom is sick. It would never occur
to Anna or Jan to lay that guilt trip on either Lindsay or Ellery. "I am
glad that she is acting like a normal adolescent," says Anna. Do you think
this is anger about your cancer? "No. All the mothers of her friends say
they are the same way. I'm sure it feeds on itself. They get together and
start to complain, "Oh, my mother won't let me --and blah blah."" Anna's
elephantine memory saves the day. "I was the same way. My God, the
histrionics, the high drama." Once, her father reached to restrain a raging
Anna, she moved, and by mistake, he caught her neck. One can picture
teenage Anna, palm to forehead, striking a pose, as she responded, "If
you're going to kill me--go ahead!" She shakes her head and laughs. "What a
jerk I was."
     The day of the hospice teleconference, Anna waits until the last
minute, hoping she will feel better, then calls to regret that she can't
make it. "I don't know what hit me, I am just so tired. I think it must be
allergies."
     On Friday, April 18, Anna and Jan meet with Dr. Miller for the hardest
session that the three of them will ever have. Both she and Jan fight to
     hold themselves together, Anna by joking with the nurse and Jan
by trying for scientific distance. Anna is now doctorlike in her ability
to read her MRI'S. "The tumors are just all over the liver," she says,
"and the liver is so enlarged, it's pushing on the ribs. My bones feel like
knuckles cracking." While she waits in Miller's office, an ashen-faced Jan
is in another room, discussing Anna's MRI, illuminated by a light box. He
strives for the impersonal, as if this MRI is not his wife's. "See all
those white things? They're all tumors. All over the place." The liver, a
not quite round mass, blots out the lung on the right side. Tumors dot the
liver like snow in a crystal ball. Following their path is almost like
viewing a galaxy of stars, some bigger and brighter, some smaller and
cloudy. Jan points to a small sphere, scrunched by the liver. "That's her
poor stomach. That's why she's having so much trouble eating." Jan still
grasps for something to work. "There's a technique--they put the catheter
right into an artery that takes drugs to the liver; it delivers a real high
dose." (miller later tells him 5-FU is as effective.) Jan returns to Anna,
sitting in Miller's office. He pulls his chair close, holds her hand with
one of his, and puts the other arm around her shoulder, stroking her
softly. "So did you see?" she asks. "Yeah. They're all over the place." He
holds up the X ray to the light from the window. "See why you're having
pain on the right side?" Anna knows this before Jan shows her anything; her
body has told her. "Your poor little stomach is getting smushed." Anna
nods.
     In walks Miller. Jan points to the X ray, saying, "These are some
pretty ugly pictures." Miller sits across from the couple, looking at them
steadily as he takes a deep breath. "It's been a great change." Anna says,
"Yeah. Major." He says, "There has been a dramatic increase in liver
metastases." Anna asks, "Any one really big?" as she holds her hands under
her ribs. Miller nods. "What your feeling, it's exactly right there." The
doctor reinforces Anna's thought. "Good," she says in a flat voice, "I'm
not crazy."
     As Anna listens, her face is shiny with sweat that drops down her
chin. She sits stock-still. Miller hands her a Kleenex. "You're really
having a hot flash." Tumor fevers had raised her temperature to 102.8 and
she has just taken medication, she explains. "The temperature's gone and
it's just me, cooling off."
     Miller keeps the concern out of his voice but not his eyes. "I think
the cancer has got a lot worse." He now draws back from his earlier
optimistic time frame. "The time is more limited." Anna asks about the
liver shutting down. "You can have a small part of the liver doing a lot
of the normal duties of a bigger liver. But you'll be more tired and will
spend more time in bed," says Miller, quietly. "It will be gradual, but
then you will spend all the time in bed."
     Jan swallows and puts both of his arms around Anna. She continues
to ask questions, trying not to cry. "Is 5-FU worth exploring?" Answers the
doctor, "That's where you guys can steer the ship." Anna picks up on
Miller's tone. "I don't know, should we? You're kind of hedging." He
responds, "The decision has to be yours. It's not my body." Before, when
Miller saw more hope, he had urged Anna to try new treatments. Now he
leaves the impression that he might like her to try, but since the
situation is so drastic now, it may not be helpful. Miller gently says,
"Don't do it for me." "Will it stop the tumors where they are?" asks Jan.
"Hopefully it will shrink them," says Miller. Anna ponders. "It could
possibly relieve pain for a while. ..." Miller says, "Hopefully. It's not a
home run drug ... but it may slow the cancer or push it back some."
     "I'll do it," says Anna, despite her earlier decision to stop
chemotherapy. Miller asks, "What do you think, Jan?" "With any drug, you
can't guarantee it'll work," says Jan. "If the side effects are not bad
..." his unfinished sentence implies that he thinks it is worth a try.
"What effect does it have on energy level and tiredness?" Miller responds,
"The difficulty is in figuring out what is caused from the cancer and what
is caused by the drugs." They sit there saying little; all three recognize
that the choices are minimal. "This is a big change and I'm concerned about
it," Ken reiterates. "I think the time is getting shorter."
     Anna nods. "I can feel it." She starts to cry. Her voice is a
strangled, high pitch as she talks over her tears. "If we start this thing,
can I wait until after Wednesday?" She looks at Jan and almost whimpers, "I
don't want to go to that lunch with a fanny pack." Miller's office had
recommended Anna to appear at a luncheon to publicize the Race for the Cure
breast cancer event to take place in June. Her face reddens as she holds
back more tears. Miller almost tears up. "You're making me cry too." "No,
no," Anna says, brushing at her cheek. Miller says softly, "I
     go with hope. It's a different pharmacology than you've ever had. So
I'm hoping it is going to work for you."
     Sherwin B. Nuland, in his book How We Die, chastises doctors in
general and himself specifically, recalling the painful treatment to which
he subjected his brother, Harvey, because "I could not deny him a form of
hope that he seemed to need. I would marshal the forces of cutting-edge
medicine and rescue him from the brink of death. ... Had I been wiser ... I
might have understood that my way of giving Harvey the hope he asked for
was not only a deception but, given what we knew about the toxicity of the
experimental drugs, an almost certain source of added anguish for all of
us." *2 Like Anna, Nuland's brother was given 5-FU with other
chemotherapies at the end. Had his brother developed cancer thirty years
ago, before chemotherapy, Nuland believes he would have lived as long and
possibly less painfully. Despite our common fascination with the latest
biotech discovery, one study in fact showed that people who opted for
palliative care instead during their last days lived longer than those who
stayed with aggressive treatment. *3
     "Doctors rarely want to give up," states Nuland. *bled Frequently it
is up to the patient and family to stop exercises in costly and painful
futility. Then, they face another cruel jolt when they are beyond
recovery--abandonment by doctors who cannot face what they subconsciously
deem a failure of science and their expertise.
     There is another reason why doctors often run away from death. "Of all
the professions, medicine is the one most likely to attract people with
high personal anxieties about dying," writes Nuland. "We become doctors
because our ability to cure gives us power over the death of which we are
so afraid. ..." *5 Loss of that power heightens their own anxiety.
Oncologist E. Roy Berger recounts how it was getting harder each year
to help patients face death because he had not resolved his own fears. "I
realized that if I could somehow feel less anxious about my own demise and
separation from life, I might be able to impart more comfort and peace
to my patients. After years of denying any thoughts of an unscientific
nature about the afterlife or the soul, my life's work was forcing me
to confront that very issue." *6
     For doctors who care, end-of-life treatment is an agonizing call.
Miller
     says later that he felt Anna needed to cling to hope at that time and
that he felt 5-FU would not be painful and would do no harm. Jan says, "The
5-FU was palliative; we were not trying for a dramatic reversal but perhaps
a stabilization to relieve the pain and allow her to eat. The main reason
to go ahead was that it was supposed to have almost no side effects."
     With yet another attempt to possibly shrink her tumors, the close bond
between Anna and her doctor remains. Even the clear-eyed Anna demonstrates
the depth of one's hope to borrow time, the desire to live overpowering
reason. "Well, we'll try," says Anna as Jan hugs her, his eyes never
leaving her face. Miller gives voice to a concern. "I don't want to be a
drug pusher and I don't want you to feel that I'm serving my own purpose."
Anna waves that off and says she's willing to try now, firmly explaining
that her drug holiday in January was her own good decision. "I got a lot of
my own energy back." She offers a wry smile. "Now, all I have is the
cancer."
     Miller urges Anna to eat. "Don't worry about cholesterol." "Hey," says
Anna, "this [cancer] is the only thing that ever brought my cholesterol
down." Miller shifts topics. "I'm so happy you're going on Wednesday." He
hugs her close. "Good luck and enjoy your luncheon." Anna says, "I'm
excited about it."
     Anna reels from this crushing blow, the suddenness with which death is
intruding. Still she manages to joke to the staff as she leaves about how
she will be sitting with "the drug people--my pushers" at the luncheon.
"And I'm supposed to have my little photo opportunity with Betty Ford!"
     Anna embodies the theory that people die like they live. With grace
and courage, she cheers up Miller's staff, rather than it being the other
way around. Despite her limited horizon, Anna is concentrating on
day-by-day rewards. On the drive home, however, Anna and Jan are quiet.
"That's the first time Ken ever said anything about the dying process," she
reflects, "how you get more and more tired and then you stay in bed all the
time. He's always refused to look down that road before." Jan tries
to switch moods. "Honey, how about watching Help!, that old Beatles movie?
We haven't seen it in ages. I thought you might be starting the 5-FU drip
tonight and got it for you." "I'll see how I feel," Anna replies,
distractedly. Jan prompts her to take her double dose of morphine. He joins
those in the medical and scientific field who abhor
     doctors who resist giving narcotics to dying patients and those who
claim they can be addictive. Hospital stories abound of relatives pleading
to give painkillers to dying loved ones. "They use it for what they need,
to stop the pain, and it is not a craving," Jan says. In the final stages,
in any event, one has to ask, Would it matter?
     They walk into the house and, as if changing clothes, shift to daily
duties, after having just been told that Anna is going to die sooner than
expected. Before she left for the doctor's, Anna had said firmly
to Lindsay, without raising her voice, "These clothes have been in the
living room for two days to be folded. I don't want to see them when I get
back." Lindsay complained, "Ellery's supposed to do it." Anna interrupted
Lindsay's litany regarding the division of chores. "I don't care who does
what," said her mother. "I don't want to see them." On her return, Anna
notes that they are still in the living room but neatly folded and en route
to being put away.
     Dinner has been brought in--matzo ball soup, roast chicken, potato
latkes with applesauce, green beans, and a special treat, chocolate mud
pie. Anna eats a small amount of the soup and a healthier amount of fresh
green beans. Her stomach can't hold more. The woman who once ate chocolate
by the pound can no longer tolerate it. She drinks Ensure and Gatorade
for the electrolytes. Walking around, Anna gets hiccups and the pain is
sharp. "Oh, that hurts." She winces but shows little expression. There have
never been melodramatics about her illness. Jan leads her to the couch and
her special L-shaped pillow, which helps cradle her right side. "Honey,
just lay down, try to relax." He sits on the couch, stroking her head and
her arms, shushing with soothing sounds. Ellery has disappeared
into computer games. Lindsay sits at the bottom of the couch, stroking her
mother's legs.
     It is a cold night and Jan, in sweats, walks their friend to the car,
barefoot. He jokes, "I'm a Wiking"--for Viking. "First thing I'm going
to do is make Anna as comfortable as I can." They hug good-bye. "And then
we will talk about all of this tomorrow."
     A few days later, on Wednesday, April 23, the vast ballroom in the
downtown Marriott Hotel reverberates with the sound of 500 chatting women.
At a reception, Anna sits as crowds surround the former first
     lady Betty Ford, who will be praised often for speaking out about her
breast cancer in 1974. At a press conference, Ford is asked whether she
would endorse today's procedures of lumpectomies or less radical
mastectomies. She sidesteps suggesting procedures for other women but says,
"I'm awfully glad I had the radical twenty-three years ago. I'm still
here!" At seventy-nine, she remains youthful-- model slim and erect in a
lime green dress and coat.
     Anna, in emerald green silk long skirt and jacket, is starkly changed
from a week ago, when she sparkled at the hospice dinner. Her responses are
slower; she seems a bit dazed. As she passes by, Betty Ford reaches over
and holds Anna's hand in hers. She makes the stock phrase "It's so
wonderful to meet you" sound genuine. Anna mentions that the effects of
chemotherapy and cancer "force you to rethink what is normal." Ford
listens, nods, and says, "Good luck."
     Now, in the ballroom, Anna is in the Land of the One-Breasted Women.
Judy Mann, a columnist for the Washington Post, herself a breast cancer
survivor, gets strong applause when she cracks, "We may be missing a few
breasts in this room, but there's no shortage of guts." The lunch,
sponsored by the Susan G. Komen Breast Cancer Foundation, emphasizes the
vastness of breast cancer, which touches millions of women and their
families in all walks of life. Bright-colored turbans, elaborately wrapped
bandanas, cloche hats, and chic-looking short cuts reveal that chemotherapy
has visited a large number in the audience. At Anna's table,
Bristol-Myers-Squibb is not dancing in attendance. No representative is
present at the unfilled table. Anna sits with two older African American
patients of Miller's. Speakers stress that more must be done to provide
insurance and to urge African American women, who die in disproportionate
numbers, to seek early detection. This month's big news is that the
National Cancer Institute has finally switched its recommendations
to include mammograms starting at age forty, rather than the previous
fifty. Maryland senator Barbara Mikulski congratulates woman Congress
members who, like herself, led the fight on the Hill for earlier
mammograms. Anna harrumphs, "A little too late," noting that it took years
to reverse the decision, remembering her bone-marrow-transplant letters
that went unheeded on the Hill. "They are all great at writing form
letters," she mutters.
     Air-conditioning frosts the room. Anna crosses her arms, repressing
shivers, as she first sweats from hot flashes, then freezes in damp
clothes. Dark patches appear on her silk jacket. Anna piles on a warmer
jacket offered by a tablemate. Tipper Gore arrives with fanfare. Anna is
interviewed by a well-known local reporter for WTOP radio, Bob Madigan. A
few weeks later, he would find the place and time to run snippets of Anna's
conversation. Although Anna's spirit returns for this interview, her
enthusiasms throughout the luncheon are muted. For the first time, one gets
the feeling that Anna is thinking that hoped-for miracles have passed her
by.
     The next day, Anna is startlingly, staggeringly worse. Her face is
shrinking into her cheekbones, she is dazed, not talkative, remembering
little. Anna is in now-baggy sweats and a green turban. The fanny pack of
5-FU is attached. Her friend, Patty Williams, supports her on a slow walk.
Jan confides to another friend as they walk behind, "It's more than the
morphine. Suzanne [Miller's nurse] thinks it could be the liver." The day
is mockingly beautiful; red-pink dogwoods, white dogwoods, cherry blossoms,
yellow forsythia, vibrant flames of red and yellow tulips-- all are bathed
in warm spring sunlight. On the way back, more awake after the airy walk,
Anna points to a neighbor watering his tulips. "There's our tiny patch of
tulips and there's Bob's all in a neat and orderly same-colored red row."
She raises her voice. "What are you doing again this year, Bob, trying
to embarrass the neighborhood with your neat, orderly, straight row of
tulips?" Her friends laugh as they help her into the house.
     As the sun goes down, a chill invades the house. Anna sits in her
favorite sofa corner. Friends call constantly. Jan lines up a relay of
friends, spacing the time so that one person will be with her throughout
the day. He is worried about her disorientation and sleepiness. He has left
work early--his boss and colleagues urge him to take all the time he needs.
Jan fixes a casserole, as airy as a souffl`e, of baked sole with a light
covering of mashed potatoes. He is pleased that Anna can eat a serving
along with green beans. Ellery is staying more and more in the basement. He
is slim, eating less, looks grim-faced and distracted. Lindsay is also
downstairs, cleaning up the rec room for Lockie, who is coming on Friday
and will sleep on the pull-out sofa. When Lindsay protests that
     some of the mess is Ellery's, Jan, shattered by Anna's rapid decline,
snaps, "No nonsense. Just get it done." Anna softens the moment, appealing
to Ellery to help, which he does. It is six-thirty and Anna can hardly keep
her head up.
     After Jan walks her to the bedroom, puts on her long red T-shirt jams,
and gets her to bed, he looks at his watch. He is reinventing their days
to accommodate Anna. "We'll just have earlier dinners." He makes a list of
foods she manages to eat--custards, Ensure, ice cream, mashed potatoes,
green beans, Gatorade, water. In a few minutes, Jan will drive Lindsay
to ballet class. Both children suddenly seem years beyond their age.
     A far happier Jan reports that Anna rallied over the weekend. "But she
could not remember anything that she had done on Thursday. She signed
papers to turn the cars over to me, but she did not remember that."
     Jan later recalls how that day was a panicky turning point. "The gut
realization that she had missed a whole day scared the heck out of me." He
was crying before he took her for the walk, terrifyingly aware that life
was slipping out of control and might end immediately. On Monday, April 28,
they are back in Miller's office. Anna says she is "feeling a little
better" since the 5-FU, "but I can't tell if it's working. I'm getting the
side effects-- my tongue definitely is starting to feel it. I'm doing
Mary's Magic Mouthwash." "At this dose," says Miller, "we hope we can keep
it going for a while." He feels that the 5-FU is psychologically important
to Anna at this stage and may be relieving pain.
     Anna's strange reaction last week troubles her. "Thursday, I went
crazy." Jan interjects, "But Friday you were great. Very much better." He
tells Miller, "Thursday I thought she was not going to make it." Miller
says that high protein in the liver sometimes causes the reaction she
experienced. "Her liver enzymes are high but the liver is still working
well. She is not jaundiced."
     Anna abruptly switches the subject to a television taping set for May
14, a little over two weeks from now. Anna admits that "talking about it
[end-of-life issues] makes it too real for some." To the end, she wants
to help others by relaying her experience. "It's going to be on family
issues and counseling and how you go through the dying process."
     CHAPTER SEVENTEEN
     Caregivers
     With shocking speed, cancer consumes Anna. The ravages of malignancy,
the fluids in the liver, have so swollen her stomach that Anna looks five
months' pregnant. Roseann cuts out shorts and sweatpants at the waist for
comfort. A battalion of buddies appear. Anna is deeply moved by ballet
friends Patty Williams and Jane Bittner, who have taken a hospice volunteer
course in order to be better caregivers.
     No matter how prepared Anna is to die, neither she nor anyone close
to her is ready for such shattering quickness. She never got the chance
to write letters to her children to be read at various milestones in their
lives. Anna's planned video never happened; so swift was her progression
that Anna did not want to be immortalized as she now looks.
     But she has made a vital decision. Anna's memory of her mother dying,
wasted and in pain, initially guided her decision to spare her children
from seeing her die. "I've changed my mind," said Anna in March. "Dottie
helped me rethink that. I have to ponder what role they have played and
would I be taking that away." She will stay at home, "but only up to the
point when one person in the family says no. Everybody has to be sensitive
to how people are able to cope with it." The dying process is never so
tidy, however, and Anna is losing much of her ability to make decisions as
cancer consumes her. Jan is so in tune with her, however, that he would
know if she wanted to leave home. His own resolve remains firm. "I felt
very adamant from the beginning that Anna would stay at home," Jan says
later. "This is one thing I could do for Anna. I would never forgive myself
if I sent her to a facility, no matter how nice it was."
     During the first week in May, Anna still walks around the block,
wearing her 5-FU fanny pack, with the designated pal
caregiver-of-the-moment. She naps longer and longer. Jan deems Friday the
second a "great day" because Anna is able to sit up for two hours at a time
and eat a fair portion of the dinner Jan makes--soft, creamy mashed
potatoes and chicken potpie. Anna talks often about the impending panel
discussion. She tries to eat in order to have strength for it, but her
system is rejecting food.
     What is happening to Anna is not so simple as the fact that
insatiable, gobbling tumors are robbing her of essential nutrients. There
are many ways for a malignancy to starve its host, the patient,
into malnutrition. Changes in taste perception make it difficult for Anna
to eat, as do the side effects of chemotherapy. Moreover, certain
malignancies release a substance called cachetin--which decreases appetite
by acting directly on the brain's feeding center. The malevolence of cancer
inspires even doctors to personify this disease as "the enemy." *1 By May
8, Anna's 5-FU treatment is junked. Chemotherapy has come to an end.
     A ballet-teacher friend, Nancy Wiltz, arrives one day with a
maddeningly complex three-dimensional puzzle of the Taj Mahal. Hundreds of
squiggly pieces of pasteboard, replicating stone and marble, sprawl across
the coffee table. Anna, sitting on the sofa, and her parade of friends
laboriously match up pieces. A few days before Mother's Day, Anna talks
long distance with a friend who is crying because she cannot be there. She
is dealing with family illness of her own. "Hey, these things happen," says
Anna, who knows better than most. Anna then goes on in a manner that makes
her friend wonder if she is hallucinating. "I took a walk with Ann Wylie,
looking for the bald eagle, and couldn't find him. I haven't seen a bald
eagle forever." It turned out, however, that Anna was clear as a bell. That
week, Wylie had provided Anna with moments of inexplicable happiness--her
last outdoor adventure. They drove to nearby Great Falls, where Anna had
found the eagle's nest, if not the eagle.
     Anna has talked to the hospice people but has not yet engaged them. As
for medication, Anna says, "I need the Lortab, which is a quick hit, as
much as the morphine. I need the two." Anna switches from herself and
continues on with some of her old enthusiasm. "We're doing great strides on
this puzzle. Lindsay did some and Nancy went crazy and did all the
     doorways." Anna talks about how slow-going everything is for
her--walking, thinking, getting to the bathroom. "Everybody says,
"Everything takes time,"" she says, with weariness. "That line is getting
old."
     Ever since May 9, Anna has been hooked up by her life port at night
to a bag filled with clear liquid that contains glucose, vitamins, and
other nutrients. The bag is attached to an intravenous pole that has a
beeper and flashing green light to alert caregivers it is empty. Because IV
feeding is considered life sustaining, hospice cannot care for Anna yet.
(various hospices differ on this crucial end-of-life decision, which will
be discussed later.) Home health care is begun in this intermediate period.
Jan administers the feeding, making precise notes. Says Jan, "The reason I
went with the TPN [total parenteral nutrition] is because she really wants
to see Ellery's birthday." (he will be thirteen on May 15, the day after
Anna's panel taping.) The refrigerator crisper drawer holds vials upon
vials of clear fluid now, not lettuce and carrots. Jan's handwritten notes
indicate amounts and the time he administers the IV.
     Every night, Jan lies beside Anna in their king-sized bed. He gets
little sleep. One night, at 3:00 A.m., he notes that Anna has shortness of
breath and that her temperature spiked at 103.2. Jan gets up, groggily, and
gives Anna a pill to lessen her tumor fever and laboriously changes her
sweat-soaked pajamas. One day, Anna is left for only minutes by Jan and
three friends. When one returns, Anna is on the floor, trying to reach the
bathroom. It takes Jan and two friends to lift her, get her to the
bathroom, and sit her back on the bed, while another rescues a pair of
shorts from the clean laundry basket. Although Anna's legs will not hold
her, she is determined, shaking her head no, when asked, "Do you want
to lie down?" She sits straight up, braced by Jan, as Bittner gives water
and ice cream. Anna takes it obligingly, like a baby bird opening its
mouth, then very slowly swallows. Everyone hovers, anxious to get more food
in her, asking questions. One says, "We're rushing her, asking too many
questions."
     While on IV at night, Anna's thought processes fluctuate and friends
and family witness widely varying reactions. With so much fluid coursing
inside her, Anna wakes up at least twice a night to go to the bathroom. She
adamantly refuses bedpans or a commode at her bedside,
     shaking her head and saying, "No, no!" To her, they are a devastating
sign of retreat, of giving up her dignity, a feeling shared by many who are
dying. So Jan is up with her, turning on a dim light, guiding her through
the obstacle of a cluttered bedroom, past a trunk piled high on top with
blankets, sheets, and pillows, to the adjoining bathroom. However, there
are three of them now--Jan, Anna, and her IV pole, which creaks along on
wheels, dragging behind her as if it is some robot, its green light
blinking. Anna feels as if it's pulling somebody else hooked to it. She
tells Jan, "Something's coming to get you! To kill you." Jan says later,
"She was absolutely convinced of it."
     As it was happening, "Anna's nighttime experiences seemed like waking
dreams," says Jan. "I had to gently calm her down. She couldn't explain
them at the time." Ann Wylie caught a different mood when Anna related her
remembrances of the IV pole. "For three nights in a row, she had had the
same experience. She was very interested and wanted to understand the
significance of these dreams. All three had the same basic theme; there
were things on the pole and it was her duty to give them to someone else.
One was a piece of jewelry that she had found that belonged to a mother
of a friend--something that the mother had lost many years before. Anna had
to give it to her. The second time it was money. It was meant for someone;
she had to give it to him. The third was not specific. It had to do
with the pole belonging to someone else. She was frustrated because she
couldn't make Jan understand. "He just wanted me to get on the potty and go
back to bed,"" Anna told Wylie. ""I started sobbing, because he didn't
understand what I was saying about these three consecutive dreams." She was
fascinated, not scared, when she told me," says Wylie. "I thought maybe it
was the morphine, but then she recollected it so clearly."
     Symbolic dreams of the dying take on special significance and
caregivers should pay close attention to them, especially if they are vivid
and recur, no matter how murky or confusing they sound. When a patient is
puzzled, as was Anna, a good listener might be able to help him or her find
the information he or she needs not by trying to interpret the dreams but
by drawing the patient out with careful questions. Some scary dreams
connote a fear of death. *2 Anna never evinced such fears, either in
conversations or in her dreams. Dream interpretations are tricky, at best,
but here is a pleasant suggestion for Anna's. It could be that, to the end,
she was thinking of others and her obligation to complete unfinished
business. Her generous spirit needed to find the owners of the baubles and
money on the pole and, even, to give the pole--whatever that
represents--to its rightful owner.
     A trail of friends from Anna's past and present meet for the first
time in the Johannessen home. The range is from age twenty to late forties,
for the most part. There are Christopher and Peggy, a charming young couple
who are professional clowns; he was boss clown for one of the Ringling
units. Other longtime theater pals, Terry and Linda, mingle with Anna's
steady troop of caregivers--Nancy Wiltz, Jane Bittner, Patty Williams,
Marcia DuVal, Ann Wylie, Linda Suarez, Jeanette Golden, Pat Wirth, Andrea
Roberson. Dottie Ward-Wimmer visits the children, who gratefully hug her;
the three of them have private time together.
     On May 10, the day after Anna starts IV feeding, Lockie gives a party,
but sadness intrudes on levity; the absent Anna is harsh reality for Lockie
that her days with Anna are numbered. The night before Mother's Day, Jan
buys flowers and keeps them in the carport. The next morning, he brings
them in; lilacs and other spring flowers top the TV set at the foot of
Anna's bed, flanked by two handwritten cards. "Dear Mom, we hope you like
the flowers. Happy Mother's Day. [A happy face consisting of a curve for a
smile and two short lines for eyes is drawn.] Today is for you. We are your
slaves today. Anything you want or need will be done. Love, Ellery." "Dear
Mom, happy Mother's Day! We hope you enjoy your day today. Tara and Missy
send you flowers on the Internet, and well, so do Ellery and me. Love,
Lindsay." Anna smiles, takes a deep smell of the flowers, closes her eyes.
     Anna's room is filling up with the paraphernalia of the afflicted. The
end table holds baby wipes and a bottle of water. On the dresser, pale
latex gloves curl in a box. An ointment tube ("for diaper rash, chafed
skin, abrasions and minor burns") is at hand to rub on Anna's bottom. Aloe
Vesta Perineal Solution II, a cool aqua liquid skin cleanser ("Apply to wet
skin, rinse thoroughly"), is next to dry-hair shampoo. There is a jar of
Vaseline for dry lips and bottles of Naproxen (similar to Aleve) for fever
and Ambien for sleep. Bright red Mary's Magic Mouthwash
     ("Swish and swallow 1 tablespoon 15 minutes before meals") sits next
to various strengths of morphine, in liquid and pill form. Jan's
handwritten notes on IV feeding lay nearby. Amidst all of this is an
old-fashioned silver hairbrush with brushed roses and filigreed top, dusty
from disuse. Next to it is a jar of hand cream, Forever Spring.
     By the morning of Wednesday, May 14, all of Anna's friends and family
worry about Anna's ability to make that night's panel discussion. For the
last few days, Anna has slept most of the time, but she is unpredictable.
One night, Anna suddenly sits up and dresses in clothes placed on a nearby
chair, determined to go to Lindsay's ballet rehearsal. Jan talks her back
down. Alertness seems erratic at best to those who cannot understand her
talk, but surfaces in noticeable ways. One day while she can still walk
by herself, Anna stares into the den at a brown-and-orange Afghan, walks
ploddingly to the Afghan, and straightens it, without saying a word. She is
living more inside her own world, a typical response of the dying.
     Now, on this Wednesday, she sleeps all day, waking only for morphine.
Jan calls Linda Suarez, Anna's friend and Miller patient, telling her, "Be
prepared to get someone at the last minute." Anna's mind is easily
sidetracked. She is pale, not jaundiced. She has a very hard time walking
on swollen feet and Jan worries about whether she can endure sitting up for
two hours of taping and whether she will be able to articulate her
thoughts. But Anna miraculously rises to the occasion, just as her mother
had four years ago to attend her farewell party three weeks before her
death. "That's Anna," Jan says. "When push comes to shove, you produce."
     That night, Anna gives the best performance of her life. She sits at a
table as the videotape rolls, wearing a black-and-white print sleeveless
dress over a white T-shirt, and, although quite thin, carries on clearly,
with dignity and humor, inspiring others about how to live until the moment
you die. Only occasionally does she grope for a word. She weaves new and
lively twists into her general themes of learning all you can, telling your
children the truth, the need to educate everyone about death and dying and
how to face it. Anna does not feel that there is enough known about
hospice: "I don't see that much in the media at all."
     The moderator asks the panel to consider seriously ill people or their
     families who are "worrying about dying and are not as comfortable as
the three of you are in talking about this--they're afraid of it, see no
hope, are living in darkness. What would be the things you could say
to them that might help them take a step toward some light?" "I know one
thing," says Anna. "When I started learning about hospice, I was amazed
to find out that it wasn't a place to go and die. It didn't mean the end
of the road. It meant, "We're going to make you not hurt. Period. For as
long as you want to be around, you don't have to hurt." I felt a lot more
comfortable after that. I didn't feel like the Grim Reaper was waiting
here." She dangles her hand over her head ""Okay! anytime," I thought. "No
pain? This could be a first!"" The audience laughs. "I can guarantee you
people don't know what the concept is," she says forcefully. "Just to keep
you pain free and as comfortable as you want to be." Afterward, Jan helps
an exhausted Anna into the car. This is the last time Anna will ever leave
her home.
     The next day, Anna fades heavily, although she manages to sign a
birthday card. On Friday, she revives a bit for Ellery's party. She lies
propped up in her corner on the sofa, smiling wanly at the balloons, ice
cream, and cake. Ellery's major present is tickets to the Bill Cosby show
next week. Shortly after Ellery's Cosby impersonation in March, Anna had
reserved four tickets.
     After the panel discussion, Patty Williams writes down her thoughts
about how much Anna means to her. Williams waits for some time alone with
Anna, then reads it to her. Anna's eyes are closed and Williams isn't sure
she hears her, but then tears roll down Anna's cheeks. Williams bends
close. "I love you, Anna," she says as she kisses and hugs her, knowing now
that Anna has heard her. Aside from the satisfaction they receive in being
able to help dying friends, caregivers must struggle with their own ways of
saying good-bye. Like Williams, they savor their time alone with the dying,
vital private moments of closure.
     The puzzle sprawl of the Taj Mahal has metamorphosed into a nearly
completed edifice, rising from the glass coffee table in pasteboard
splendor. On May 17, two days after Ellery's birthday party, the Sunday
avalanche of newspapers surrounds the Taj Mahal and flows onto the sofa.
Jan's crossword, worked on while Anna dozes, is almost finished. A
     friend who has not seen Anna in two and a half weeks is stricken
by the decline of her bouncy, talkative pal. Anna sits straight up on the
living room sofa, eyes open. Her silence is eerily out of character. Other
voices fill the air, but they cannot make up for her vigorous amusement at
life. Wayne has returned again from Richmond and sits on the far side
of the sofa; Jan is next to Anna.
     She is scrubbed to a shine, smells sweetly of talcum powder, and wears
a pink-and-white-checked pajama top and plaid shorts. In cruel mockery, her
hair is growing back beautifully, fitting her head like a cap. She has full
eyelashes and eyebrows. Her eyes express some recognition of her latest
visitor's kiss. Her mouth opens but nothing is uttered. She does not seem
to be in much pain. Always attentive, Jan asks if she wants another pillow.
Anna shakes her head no. With great effort, she says what sounds like "It's
just the way it is." The phrase becomes a one-liner for Wayne. Whenever
Anna is asked something and there is no answer, he gently glides into "It's
just the way it is." Anna smiles when she hears him. Her dark eyes fade
behind fluttering lids, then open wide, then close again. "Do you want more
water? Want to sit back?" Jan asks, although she seldom responds. "Let's
get your legs back up." He lifts her legs onto the sofa, then fifteen
minutes later asks, "Do you want to lie down on the chaise on the sundeck?
It's beautiful out." He and Wayne lift her up. Anna mumbles, "You just got
me down." Jan laughs, "I know, honey, but it will be good to get outside."
Wayne says, "Let's catch some rays. They'll feel good."
     In order to get Anna in the right direction, Jan moves her around, in
that slow dance caregivers learn--Anna's hands on Jan's shoulders, his
securing her at the waist, then turning, slow step by slow step. As Wayne
holds her on the other side, Anna shuffles slowly between them, certain
to fall without their support, and settles into a chair. Afternoon sun
slants across the deck and onto the yard. Jan leaves Anna with Wayne,
knowing his time with her is precious. Light beads of sweat appear. Anna
smiles as Wayne spreads a cool cloth on her face and then gently dries it.
Anna sips water from a cup with a picture of a woman in a large hat and the
words "Of course women don't look as busy as men. We do it right the first
time." Anna tries to form a sentence: "See the woman with the hat ..." She
stops. Wayne prods, pointing to the cup. Anna
     stares. The thought is gone. She dozes, then nods when Wayne asks if
she wants to go in. Anna leans her head on his shoulder and smiles, back on
the sofa. Simon and Garfunkel waft from the stereo--"Hello, darkness, my
old friend ..."
     This horrible irony, the loss of Anna's talent for expressive
verbalization, is not caused by medication, experts feel. "Morphine just
doesn't do that," says William Lamers, a physician and psychiatrist and
premier hospice consultant who, in forty years, has witnessed close
to 3,000 dying patients and families go through the death process. "I've
seen people on massive doses of morphine whose speech remains lucid. It is
more likely lesions in the brain. Almost all kinds of tumors are little
cellular factories that can produce complicated chemicals. We know for
instance that lung tumors can produce neurotransmitters that influence
brain activity. Breast tumors can do the same. There's a state of
confusion, agitation, delirium, that results purely from the products
of the cancer cells themselves. It's not terribly well examined because it
is usually seen in the extreme circumstance when the patient is nearing
death and the focus of those treating them is "God, keep them comfortable."
I've seen this so many times."
     Somehow life must go on, small pleasures must be found. As Wayne stays
with Anna, Ellery and Jan pile into Wayne's white Cobra Mustang. "Dad, can
we hit some of those detours on the way home?" Ellery eagerly asks. He is
referring to the sharp turns and high speeds on the side roads where Jan
lets out the Cobra full throttle. Jan answers, "We'll see what time we
have."
     Parents sit on bleachers in the studio filled with dancers staring at
themselves in mirrors. It is hard to imagine that the graceful and
authoritative Lindsay is only eleven. Willowy in soft peach, she twirls
to Enya's "China Rose," a favorite of Anna's. Patty Williams and other
friends struggle with tears as they watch Lindsay, who looks more like her
mother each day. On the way home, Lindsay pulls her hair out of its bun and
reveals a transition. Her hair is cut to shoulder length. She fans it out.
"I love it." Her long hair now hangs, like a pony's tail, on her bedroom
wall. Both children plead for a quick spin. Jan, anxious to see Anna, says,
"Let's go home first."
     At home, Jan helps Wayne get Anna up to go to the bathroom. Shakily,
Anna stands uncertainly by the bathroom door, hesitating to go over the
doorsill. Jan puts Anna to bed. For many nights now, Jan has tried to stay
awake or respond when Anna needs to get up, but one night Anna does not
want to disturb him. A snoring Jan cannot rouse himself. He finds Anna on
the floor, halfway to the bathroom, with the drip still attached. That
moment convinces Jan that the IV feeding is an impediment and no longer
helping. "The purpose was to try to give Anna more strength in her final
days," he says. "I thought it would make her more comfortable and she did
feel better for a short time." He now makes the decision to stop, knowing
that the feeding can be a load on Anna's failing system. "The hospice nurse
says the IV feeding--putting a high-protein load into a liver that is
working less and less--could even make it worse."
     Ken Miller calls one evening. He tells Jan that he considers Anna a
friend and asks Jan to call him any time of the day or night if he needed
him and he would be right over. He agrees with Jan about stopping the
feeding. Unlike some who decide to cut off feeding, there are no grinding
conflicting emotions for Jan. He and Anna had talked endlessly about doing
so when this time came. He is without hesitation, feeling that it would be
cruel to prolong this stage. For those who adhere to such wishes of the
dying or their own instincts, the knowledge that it will end a painful
process provides steely courage. Others are torn by conflicting wishes of
family members or a sense of guilt and often wish for a helpful doctor
to encourage their decision. But as has been noted, doctors are loath
to participate in such a dire acknowledgment of death. Death educators
stress that learning about the dying process makes it easier.
     By Monday, May 19, the Johannessen house has taken on the appearance
of a command post, with Jan, unfailingly polite as always, scheduling
shifts of Anna's volunteer friends. Ro has gone home but will return the
following weekend. Jan has not shaved and a dazed look occasionally
overtakes him, but he experiences an amazing adrenaline high, juggling
detail after detail-- up with Anna in the middle of the night, up at
five-thirty to get the children off to school, racing to the office if he
feels Anna is well covered, hugging everyone who comes into the house,
spending time with Anna and the children after everyone leaves, then on the
phone with Ro. The kitchen is filled with comfort food: donuts
     and carrot cake, spaghetti and pizza, deli sandwiches, soups and
salads, brought by the crew. His uniform is shorts, flip-flops, and a
T-shirt. He has taken to putting the ever-ringing cellular phone in his
shorts pocket as he moves energetically around the house. His customary "hi
there" greets everyone. "Not much, hanging out, got a couple of calls
to make. ..." "I'm trying to transfer the videotape of Lindsay's ballet so
we can play it in Anna's room. ..." "The kids can go to the farm if they
get their homework done. Remind me later, cuz I'll forget. ..."
     Hospice is alerted on Sunday night, May 17. Monday is an exercise in
futility as attempts to coordinate with hospice fizzle. In recent years,
hospice patient loads have changed dramatically; it is no longer just a
vestibule for the elderly. Younger cancer and other terminally ill
patients, AIDS, and a growing desire to die at home have swelled the
numbers of pre-Medicare patients under age sixty-five. "There is some
mix-up about officially transferring from home health care," explains Jan.
"My Blue Cross policy will cover it, but hospice wants to make sure they
will pay."
     The nurse assigned to Anna that first day is out sick. No one calls
the Johannessens and no one comes. Anna's friends work so efficiently that
the absence does not affect them for one day. A friend and nurse, Belinda,
shows them how to wash Anna, carefully and lovingly. On Tuesday, a hospice
nurse, not the permanent nurse who is still out sick, shows up. She is
efficient and warm and apologizes for yesterday. She checks Anna's vital
signs, while Jan puts Vaseline on Anna's lips. "Her mouth gets dry,
sometimes she breathes with her mouth open." The nurse suggests a hospital
bed; "raising her head up will help with her breathing." The nurse is
quietly insistent. "The hospice likes twin beds, that you can raise and
lower. If there is only one aide or caregiver, you can turn her much
easier. It's more comfortable."
     But Jan will not hear of it. He and Anna had made a pact; for the
children's sake, Anna desperately wanted the bedroom to look as natural as
possible, not like a hospital cubicle. And they wished to be able to sleep
together to the end. Inconvenience aside, the king-sized bed becomes a
magic carpet for friends and family. Anna is not in pain as they sprawl
around her, hugging, stroking her arm, leaning close to have intimate
conversations. When she grimaces slightly or moans, they are
     ready with morphine. Unencumbered by visiting hours, they come and go
at will; Anna is seldom alone. Without rails, they can hold her hand with
ease, sitting on a chair next to the bed. When Anna awakes, her gibberish
is often indecipherable, but her calm face, the upraised-eyebrows greeting,
reassure everyone that Anna knows she is surrounded by friends, not alone
and fumbling for a call button to summon a fleeting hospital nurse.
     "Pain control is a must," says the nurse. If Anna cannot communicate,
they must watch for signs--groans, winces, discomfort when moved. Outside
of Anna's hearing, talk turns to durable power of attorney and DNR (do not
resuscitate) papers. "We have them," says Jan. But bureaucracy is no
stranger to hospice; the nurse says this must be noted in a hospice book,
which Jan has yet to receive, "in the event she stops breathing and doesn't
want to be resuscitated."
     Jane Bittner expresses anger about yesterday's inefficiency, stressing
that speed is essential. "Anna's gone down so fast, she may not be here
tomorrow." The nurse assures her that it will not be that fast. Like many,
Bittner is disturbed that hospice rules make it difficult to take patients
as long as they are receiving treatment--based on the regulation that
hospice patients must relinquish attempts at curative care. Indeed, hospice
members sometimes make independent decisions. Some hospice doctors and
directors, for example, admit patients while they are receiving some
treatment or IV feeding, reasoning that this is "palliative"--rather than
"life sustaining"-- since such procedures may ease pain for those who are
clearly dying.
     Bittner also feels that Anna and Jan postponed setting up hospice too
long. This is a nationwide failing. Instead of viewing hospice as
quality-time pain-free treatment, as Anna stresses in her videotape, many
patients and their families suffer needlessly while waiting far too long
to turn to hospice. Although attitudes are changing greatly, some are still
held hostage to the corrosive myth that hospice connotes giving up.
Relatives who ease their own burdens by removing loved ones to hospitals
can also do a major disservice--often dying patients are all but abandoned
and in pain because hospital staffs resist following hospice's pioneering
steps in pain management and maintain aggressive treatment to keep them
alive, even if they are comatose. The nurse urges Bittner to call hospice
and
     stress that Anna needs them right away. "I'm only a field nurse, not a
supervisor." By midweek, hospice is functioning; insurance will pay, the
aide is set to come four days a week to bathe Anna and change sheets, the
nurse twice a week. Jan and Ro will be the main caregivers.
     At Anna's request, Jan refuses the services of a chaplain or social
worker, and Anna's friends provide far more hours of tender care than would
a hospice volunteer, in addition to washing endless mounds of laundry and
cleaning the house. Dottie will provide counseling for the children and Jan
reasons he does not need social worker assistance, although they provide
help in everything from educating caregivers (which was not properly
addressed with Jan and the other helpers) to making funeral arrangements.
In addition, they are a neutral force that can further harmony among family
and friends in a highly emotionally charged atmosphere. As for religion,
hospice adheres to strictly nondenominational spiritual guidance, and their
chaplains assiduously make no effort to alter or disapprove of a family's
beliefs or, as is frequently the case, nonbeliefs. For countless other
families without a support system as strong as Anna's, the unique hospice
team concept is invaluable in making an ordeal bearable and provides
lasting memories of comforting support.
     Friday, May 23, is the big night--the Bill Cosby show in downtown D.c.
No one mentions how sad they feel that Anna will not be there. Ellery takes
a friend instead. Jan hesitated until friends urged him to go. Four of them
will stay with Anna until they return following the early show and dinner.
A new sign is up in the dining room, made by Anna's friends. "CONGRATS
to LINDSAY! Good for You!!" Lindsay had earned a World Studies Achievement
and Honor Roll Award. Friends can envision Anna, the vigilant mom, saying,
"See? I told you, you need to push!"
     As time goes on, Ellery and Lindsay choose to withdraw more and more
from the hubbub around them. Lindsay's method of control is to avoid any
conversations about her mother, however well meaning, for fear that she
will "lose it." The house is constantly full and Lindsay appears more
startled than annoyed at the takeover. She retreats to her bedroom to do
homework while Ellery communes more and more with his computer games. Says
Dottie Ward-Wimmer, "Remember there's a control piece here. "I'm already
out of control, don't you dare make me
     talk about it, don't you dare make me think about it, don't you dare
make me cry. Don't put your arm around me.""
     Despite Jan's all-consuming devotion to Anna, he becomes aware of how
much the activity is disrupting his children. After Ro returns, Jan asks
caregivers and friends to come earlier so that the house will be quieter
when the children return from school. "These friends who love Anna are
there with all good intentions, but there's a real balance that needs to be
maintained," explains Ward-Wimmer. "The very turf that the kids need in
order to feel settled to do this processing is now being overtaken. And how
can you get mad? They're taking care of your mother! It's not that they're
unsociable, or don't understand. It's that they have no place to go,
to feel it all out."
     As Jan and the children leave for the Cosby show, the women tend
to Anna. She sits up and seems to understand them. Scrubbed, hair brushed
smooth, wearing Walt Disney pajamas, Anna looks like a docile child. At
soft commands, she opens her mouth to drink water, one sip at a time, take
drops of morphine, swallow tiny spoonfuls of sherbet (hospice nurses have
informed them that ice cream can create mucus, which makes breathing more
difficult). With Williams bracing her from behind on the bed, Anna sucks on
a mix of crushed ice cubes and Gatorade. When asked if she wants Jell-O,
Anna's eyebrows go up. At times, Anna seems agitated, moving her head with
slight grimaces, spreading a curled hand over her face. Morphine drops are
given. When she sits up, friends take advantage to push pads under her and
change her diapers. Anna does not protest what she would have considered an
indignity a month ago. All the while, Breakfast at Tiffany's is playing on
the VCR; friends too young to have seen the movie are transfixed. Outside
Anna's bedroom world is another time and place of routine living; birds
sing, a hammer pounds, a lawn mower buzzes.
     Tina, in blue jeans, lies across the bed, talking to Anna. Everyone is
convinced that Anna can hear them. This view is bolstered by caregiving
professionals who warn family caregivers never to talk about anything dire
or upsetting and never to presume the patient cannot hear, even in a coma.
Hearing is the last sense to go. One hospice caregiver tells the story of a
man in a coma who had expressly told his mother he wanted no priest. As he
lay motionless and comatose, the mother sneaked in a
     priest to give him last rites. Her son thrashed in horrible anger, his
body telling his mother what his voice could not--that she had betrayed
him.
     In the kitchen, Anna's friends take breaks and pick at a mishmash of
food--homemade tomato and basil sauce with pasta, leftover Greek salad. The
women become confidantes, exchanging their stories and times with Anna.
Jane Bittner's sorrowful remembrances include deep mourning for her
twenty-six-year-old son who died in a motorcycle accident. "One never "gets
over it." It just changes, but you will always remember."
     Bittner's tears flow. For her, every mother's worst nightmare came
true--the call in the middle of the night. Bittner leans heavily against
the sink counter. Her friendship with Anna is immensely helpful. "When I
met Anna, I felt instantly that this is someone I have to know." Bittner is
one of many, as Marcia DuVal points out: "Her personality is intoxicating--
you can't be around her without feeling uplifted." DuVal says that Anna
changed her life. "I had a difficult family life. Here was this abandoned
puppy on the side of the road, and she took me home. I had a chance to see
what really loving people could be like with their children." Because Anna
makes them feel special, each friend carries around this warmth, this
certitude, that he or she is the one really special friend to Anna. In
reality, they all are.
     Tina McCarthy met Anna in Richmond. Anna has told Tina, as well as Jan
and just about everyone, that she hopes Jan and Tina get together after she
is gone. Jan and Tina shake their heads, letting Anna live her fantasy.
After all these years, they are more like brother and sister. In March,
Anna had had a long discussion at Lockie's house regarding a rift that had
grown between Lockie and Tina. It disturbed Anna greatly. Now, during these
fading days, Tina and Lockie lie on the bed with Anna and tell her that
they have made up. Anna's contented grin tells them that she has heard
them--and that they have made her dying days happier.
     Reconciliation--either the patient dealing with discord in his or her
life or a reuniting of others within the close circle, like Lockie and
Tina--can be paramount for the dying. Often they will hang on until this is
achieved. One of the cruelest cases of reconciliation thwarted is that of
an AIDS victim whose father refused to speak to him after finding out his
son was gay. Other family members' frantic attempts to
     intercede came to naught. The son died a sad, lingering death after
being "held back" from his desired destination while waiting for the father
who never came. *3
     Breakfast at Tiffany's has ended. The ubiquitous fare of
hospitals--loud, intrusive TV shows complete with cackling laugh tracks--is
absent in Anna's room; classical music flows soothingly on tape. It is a
night of many phone calls. The bubbly voice of Christina, who sells TV
airtime, asks if it is okay if she brings her newborn baby to see Anna.
(when the message is relayed later that night, Jan says, "That might be a
good idea. Anna's been waiting for that baby to come.")
     The phone is held to Anna's ear when Lockie calls and later, Wayne. He
carries on in an effortless manner that some people find so easy, and
others envy, when dealing with the dying. Everyone is convinced that Anna
understands as Wayne does his monologue, his laughter coursing through the
phone. "Remember when we did this?"; he sings snatches of favorite songs.
"I know you can't talk, so I'll just talk, and I know you can hear me. Love
you, Anna." Anna's eyes open at times, then close.
     The dogs bark frantically to announce the return of Jan and the
children. Although Ellery is exhausted and stuffed with pizza, he raves,
"Cosby was great! He did a lot of new material." Both children come
to Anna's bedside and tell her good night, kissing her on the forehead.
Lindsay is elegant, taller than ever in slight platform shoes, wearing
glistening plum-colored silk pants that belonged to her mother. In the
kitchen, Lindsay gives her dad a hug good night, then moves to the piano
and starts to play a lyrical piece. Anna hears the sound in her bedroom and
moves in an effort to sit up. The tape is turned down. Anna, leaning on
friends, rocks slowly. As she listens to her daughter playing, tears run
down her cheeks.
     At eight-thirty the next morning, Ro and Cliff arrive, having driven
all night from New York. It is clear that Anna's sister has come to take
charge. Jan's mother, Phoebe, had offered to come, but says Jan, "I was in
complete agreement that this was Ro's place and I really was grateful she
could come. I really needed her." That weekend, Ro and Jan made the
decision to tell Anna's father not to come from Florida. Stephen agrees.
"The trip, alone, will be rough," Jan says. Unmentioned, but cer-
     tainly respected, is the trauma of such a final visit to this loving
and emotional father, who cannot face the thought of the natural order
being reversed, his daughter dying before him, and cannot talk to her on
the phone after he is told that she probably would not respond.
     Even in the best of families, duties and desires of relatives during
the dying process can create unsettling disharmony--but this can be
diffused through discussions on what each one should do. In the
dysfunctional, discord can devastate. Occasionally very bad families can
find closure. "Caregiving out of a sense of obligation rather than love
might not be a negative," says Ken Doka. "It might be positive. A sense of
saying, "I'm a good person because I've done what I was supposed to do. It
can validate me." In one case, a father had a severe drinking problem and
was very physically abusive to his children, who held him responsible for
their mother's early death, of cancer, because her life was so stressful
with him. But they were very good caregivers, though probably a part of
them just wanted to walk away." A lifetime of abuse and loss flooded back
and the daughter acknowledged that "my father was not the best father."
Then she added, "He had better children than he deserved." Says Doka,
"That's a nice thought. Her way of closing down on it."
     For any family, seldom will emotions be so heightened, so convoluted,
so fierce, as at this time. They can battle over decision making. The
mother of a son dying of Hodgkin's fights with the sister who is trying
to enforce her brother's decision to stay at home instead of going to the
hospital, for example. Some members can bear lasting grudges against
siblings or other relatives who shirk their duties or shun the death
process. Husbands who were not so faithful can be subsumed by guilt. The
weary wife of an Alzheimer's patient can feel guilty at the relief she
feels as the end nears.
     Among the Johannessens and their friends, another common emotion
surfaces, the desire to be the one most helpful source of comfort. It was
natural that those who had cared so diligently for Anna would have to take
a back seat when Ro arrived. There are some awkward moments and ruffled
feathers, but they quickly pass. Ro observes the necessity for friends
to have private time with Anna, and backs out of the room accordingly. But
the main reason that the system continues to work is that Roseann
recognizes and respects their help during her absence and
     knows it will continue. She later relates, "The unconditional love and
caring they gave is something in today's day and age that you don't see and
people don't know about. I commend every one of them. It overwhelms me when
I think about it."
     One should not romanticize caregiving, which can be trying under the
best of circumstances and brutal at worst, depending on the patient or the
situation. Yet for many who care for loved ones at home, the benefits are
enormous --as it is with the Johannessen clan. Despite sadness, at times
accompanied by searing emotional and physical exhaustion and disagreeable
chores, the gratification, even joy, of helping relieve pain and suffering
can be manifold. Caregiving camaraderie--a raw closeness seldom found in
day-to-day living--can be a blessed memory for the rest of one's life.
     With Anna's group, there is time for sweet remembrance but not, as
yet, for mourning. Being busy, doing for a loved one, supersedes fatigue.
Jan finds a deep reward in being able to care for Anna, make her
comfortable, talk to her, hold her, lie next to her at night, and seems
almost incapable of stopping. Ro runs a close second--even though friends
repeatedly tell the two that they will spell them. Jan and Ro feel that it
will take two to handle Anna--and they want to be the two. When Cliff is
present, he provides his own gift, gourmet meals, which are often eaten on
the run.
     Ro is not pleased with the reports on hospice. "It's one thing
to train the volunteers, but they should train the family better." When Jan
comes into the room, she asks, "Did the nurse tell you what to do?" "Very
little," responds Jan, who learned more about shifting Anna in bed and
changing diapers through watching the hospice-trained volunteer friends.
This is a crucial factor; often families are not given explicit information
on the dying process and its progression. Luckily, Jan's science background
makes him an assured administer of morphine, waiting until it takes effect,
a matter of minutes, before attempts are made to move or change her.
     Memorial Day, May 26, provides a lesson in how no one can predict the
time of death. After somnolent days when it seemed the end was near, Anna
is suddenly alert. She sits in bed with her eyes open and, although she
doesn't smile, says very clearly, "How ya doin'?" as a friend
     kisses her on the cheek, before tumbling into a world of words unknown
to her listeners. Seeing her Richmond friend J.p., John Pishko, walk
into the bedroom with Wayne, her eyes open wide and she utters a very
distinct "Holy shit!" Pishko laughs heartily as he sprawls on the bed and
Anna smiles a bit. Downstairs, Wayne puts on a tape of Anna and the old
crowd singing a song he wrote, "Give Me a Life Full of Love (and Make It a
Life Full of Love for Yourself"). When they finish, Anna's youthful voice
bursts forth on tape, "Wow! That's the best we ever did that!" As they move
into "Will the Circle Be Unbroken?" Lockie and Anna provide strong, tight
harmony. After, Wayne says wistfully, "We were good."
     Wayne has brought the tape for Anna, but Jan cautions him not to play
it for her. The night before, Jan had put on some old ballet tapes and Anna
seemed fine with them. Then he showed a family video. "Anna started crying,
sobbing. I didn't know if she didn't want to see herself or whether she
didn't want to be reminded of the good times, but she was really upset."
Jan feels Wayne's tape might have the same effect.
     Anna is unusually restless and Ro predicts, having seen Anna's mom,
that she is going into "the next phase." At one point, Anna opens one eye,
then the other, then very deliberately starts to move herself up and out of
bed. In her confusing speech, the words "the kids!" are very clear. She
moves with astounding force as a friend attempts to restrain her.
"Lindsay's right here," her friend says calmly. "Ellery's at the movies.
No!" she says more sharply, struggling with Anna. "You don't have to get
up. I'll get Lindsay." Instantly Ro and Jan are in the room. "Hi there!"
says Ro in a cheerful voice, positioning herself in front of Anna like a
blocking guard. Jan sits on Anna's left side, holding her, saying
soothingly, "Everything's okay, hon." Lindsay comes in. "Hi, Mom, I'm
here." Anna looks at Lindsay sitting by her side, but there is no sign of
recognition. Jan drips morphine into Anna's mouth. With some urging, she
lies back down.
     CHAPTER EIGHTEEN 286-287
     Letting Go
     A long nightmare for Jan and Ro begins Anna's descent to yet another
level during the early hours before dawn. The agitation that Anna
experienced throughout Memorial Day blows into gale force as the rest
of the house sleeps. All is calm when Anna goes to sleep around 10:00 P.m.,
but then she wakes up at 2:00 A.m. on Tuesday morning and never stops
talking for eleven hours. Jan is awakened first by thrashing and loud
talking. Ro and Cliff hear her from the basement and Ro bounds out of the
sleep sofa and rushes up to help. Lindsay and Ellery are awakened by the
noise. Ro and Jan sit on either side of Anna on the king-sized bed, trying
to restrain her. So weak and docile in the hours before, Anna suddenly
summons amazing strength. Her ability to move is astounding. "It took the
two of us to hold her," Ro recalls.
     Even so, she breaks away, moving all over on the bed on her knees,
refusing to be calmed. It is as if she has no pain. "Her adrenaline was
such that any pain she had was superseded by the fact that she wouldn't
give in to sleep," comments Ro. "And the reason she wouldn't give in
to sleep--she kept saying over and over again, in so many words--was that
she didn't want to die. She was associating sleep with death and this is a
stage they go through."
     Yet something else is taking place. Anna may be experiencing her last
rebellion, but there are other forces at play. Unfortunately, these
all-too-common moments of the dying are viewed by observers as
morphine-induced hallucinations or visions caused by oxygen deprivation.
However, they are too frequent to be discounted on such terms
     alone. The most prevalent theme in nearing-death awareness seems to be
being in the presence of someone not alive. The dying person often stares
past those in the room, fixated on one spot. "Timing varies; the experience
can happen hours or days or sometimes weeks before the actual death," write
Maggie Callanan and Patricia Kelley, two hospice nurses. "Dying people
often interact with someone invisible to others--talking to them, smiling
or nodding at them. ... Generally they recognize someone significant from
their lives who is already dead." *1
     During this phase, Ro watches Anna "communicating with something she
sees when she looks at the fan. No, I don't think it's the morphine." Anna
talks to her mother, calling her by name, then to Rufus, one of her
favorite dogs of the past, and to the grandfather who used to buy her ice
cream and died when she was about five. "I could hear the names, and she
would go in and out," recalls Ro.
     Sometimes this other life is so vivid that it stuns observers. One
man, Ralph, whose swimmer friend became a paraplegic after an accident and
died before Ralph, is seen by Ralph in a final vision, whole and healthy,
ready to help him cross over into death: ""Oh, look!" he said excitedly.
"Here comes Steve! He's come to take me swimming."" *2 In Florida, Millie
Cowan cared for her elderly brother at her apartment. He steadfastly denied
his dying but performed symbolic rituals. He insisted on keeping a suitcase
packed and a fanny pack with money nearby and talked about "going home."
Said his sister, "I knew he wasn't talking about Maryland."
     Rather than dismissing such messages as the result of medicine,
hallucination, or loss of intellectual function, observers can better
respond to such symbolic communing by expecting it to happen. It may even
be possible to talk to the patient to find out what he or she is
experiencing. "The most important thing to remember when a dying person
sees someone invisible to you is that death is not lonely. ... These people
tell us ... that they didn't die alone, and neither will we." *3 Anna has
Rufus, her mother, and her grandfather, and perhaps others, as companions
on her journey.
     Yet Anna has other indecipherable fears about unfinished business that
take the form of anger, so inexplicable and out of character. Sometimes she
shouts, "Where are the kids? Lindsay! Ellery!" Lindsay gets up and
     goes into the room. Anna stares at her and speaks in a sharp tone,
then says, "That Lindsay--you've gotta watch out for her." Jan and Ro never
understand the reference. It could be that she is talking about her
concerns for Lindsay, and that they had to literally watch
out--to care--for her. But Jan cannot fathom her lashing out. "Poor Lindsay
didn't need that." He soothes and holds his daughter in the hallway outside
the bedroom, telling Lindsay that her mother is talking that way to others
and not to take it personally, that she is awakening from bad dreams. They
cry together. Later, Lindsay and Anna have their tender moments as Anna
holds her daughter's hand, which makes up for this wild night.
     At dawn on Tuesday, Anna's need to control, to rebel, resurfaces
dramatically. "The aide came in," relates Ro. "I needed to have Anna
sponge-bathed. She would not let it happen. She was up all over the bed,
buck naked, and would not let anybody touch her. She was adamant. Moving
all over. I'm not sure, but I think she associated the aide with death--not
being able to do things for herself." Anna's anger turns to Ro and even
Jan. Anna scowls and shouts at the sister and husband she so loves. "She
didn't want us to touch her!" says Ro. Anna broke the skin on her sister's
arm as she struggled. "She wouldn't let us put anything on her or put the
diaper on. Fortunately, I had those chucks down when she finally let go."
     The aide suggests that they give Anna a Valium derivative, Lorazepam,
to calm her down and leaves. It takes Jan, Ro, and two caregiver friends
to get Anna clothed and diapered. Jan races to Miller's office five minutes
away for the antianxiety prescription and then to the pharmacy. While Jan
is away, Miller comes to visit, having called to say he was going to stop
by. It is rare for doctors to visit dying patients, although Miller does it
on occasion.
     Unfortunately for Miller, this is the worst possible time for a visit.
"I'm not talking to you," Anna says with a clarity that came with this
agitated state. Angrily she turns on Ro. "I told you not to let him in my
room!" Miller sits down and Anna says through clenched teeth, "I have
something to tell you. It's your fault that I am this way. You misread
things, you weren't quick enough with new things," she says loudly,
gathering steam. Miller sits there and takes this barrage and then quietly
says, "Can we change the subject?" Anna is not about to let this happen.
     Peaches and Cream bark loudly, signaling that Jan has returned. Ro
slips out and tells him to hurry. "Ken is here and she is mad!" When the
two of them walk into the bedroom, Anna is pointing to the wedding picture
of Jan and her on the wall and shouts at Jan to bring it to her. "You
ruined this family! This was a beautiful family," she says, shaking her
finger at Miller. She doesn't stop, even when he tries to change the
subject again by asking Anna how she feels physically. As Miller leaves the
bedroom, Jan gives her the Valium derivative.
     Later Jan says, "I've gotta call Miller. I feel terrible about this
because that is not how Anna sees him." Ro feels otherwise and responds
angrily to the suggestion that Anna may have been rambling and confused.
"No! You could understand every word she said, blaming him for the reason
she is where she is now. And I don't disagree."
     As Ken leaves Anna and walks into the living room where Ro is sitting
he is saddened, but feels that Anna did not mean her attack except in a
general, final frustration. "I'm really happy to have the opportunity
to meet you," he says to Ro. She responds, "I need to say a couple of
things to you. I'm really not happy about a lot of things." Later Ro
relates, "And he tried to pass off to me the kind of thing that "life
doesn't pick who gets this." I know that! And how what is happening to his
daughter is an example of how you can't control it--and how fond he is of
my sister.
     "I believe that, but I addressed the fact that there needs to be more
flexibility in the medical profession [concerning protocols, providing a
central data base of information regarding new treatments that doctors and
patients could quickly tap into]. He passed that off. He would not listen
or take that seriously." Ro's voice rises in indignation. "That's when he
said that life chooses and you can't do anything about it and one thing and
another. I found this very inadequate, but I was not going to take the time
to challenge him right then. However, if the man feels that way, to me, it
is a great injustice to his patients. Because if what you are prescribing
does not work, then where are the avenues to go? And he said, "Jan was a
great help." I looked at him and said, "This is your job! It wasn't
Nils's!" He didn't answer. And then he left."
     Miller recalls his sadness, his own grieving, and why he had no desire
to debate his treatment or discuss the merits of a centralized medical-
     information data base for patients. Indifference played no part. "This
woman I care for deeply is dying in the other room! It was not the time for
that. I just let it go."
     Jan is too wired to nap. He can't stop talking about how Anna could
not stop talking. Anna finally sleeps, but she wakes up two hours later. Ro
finally dozes but soon wakes up. Her head pounds and the circles under her
eyes are deep. All seems serene in Anna's room. Classical music plays
softly; friends climb up and down the basement stairs, doing laundry, load
after load. They are comforted by the knowledge that Anna is getting the
best care imaginable-- theirs.
     Friends compare stories about this agitated state, which seems to be
common. One remembers a distinguished former White House cabinet member
reduced to the indignity of a supposedly superior hospital where
indifferent nurses and aides barely looked in on him. He had huge bed sores
and was often left in dirty diapers. Agitated, his bony fingers picking at
his covers, although he seemed in a coma, he would shout, "Help me, please.
Somebody, help me! I'm dying, help me!" Another mentions a gay friend
recounting that, as frail as his dying lover was, he "had the strength of
ten men" when he became agitated. For Anna's mother, this period lasted for
about twenty-four hours, not as violently as Anna's, before she fell into a
coma and died. The hospice nurse has seen patients rant. So much for the
concept of going quietly into the night. Loved ones find relief in knowing
that patients in this state are often not in pain.
     Jane Bittner suggests that Anna needs to know that all is fine,
particularly with the children. Jan had already begun reassuring her,
giving Anna permission--a common need among the dying-- that it is all
right to go. There are numerous accounts of dying patients staying on in
order to reach a certain goal--the patient who lingers until a relative or
close friend flies in, or revives enough to attend a wedding or birthday,
or waits until family and friends provide ease and closure by saying that
it is all right to go. Jan feels certain that Anna, such a stickler for
getting everything completed, is agitated and fighting because life is
slipping too fast. He remembers Anna's instructions: "If any one of the
four of us does not want me at home, I'm outta here." Leaning on a kitchen
     counter, he says softly, "Can you imagine how scared she'd be waking
up in a hospital room with no one she knows around her? If she can get this
agitated even with us? Last night was very difficult for Lindsay, but I
still don't think she'd want her mother"--he gulps and tears come-- "to go
anywhere."
     Jan brightens when he says, "Ken said she was looking good, she isn't
jaundiced." Anna indeed remains astonishingly pretty. Her arms are thin,
and her cheeks are gaunt, but an alabaster beauty remains. "She laps up the
Gatorade," says Jan. "You can go a long time without food if you drink."
Her liver and kidneys continue to function. Miller tells Jan that it could
be another two weeks.
     On Wednesday, Anna is calm again. Jan does not want to dull her with
antianxiety medication and stops the Lorazepam--but not before he gives her
some in the morning to make sure she will not fight her bath. Annie, the
tall and pretty nurse's aide, is an invaluable source of help. She warms
the water, the soft rag, and the washing liquid she will spray on Anna as
she works gently, limb by limb. Ro talks baby talk to Anna, a steady stream
in a high voice, as a child talks to a doll, reverting to the past, when
she was Anna's minimother. "We're going to have Anna's spa day. A spa day
for my sister. A sponge all over and then a massage. ..."
     Although Anna sleeps the deep sleep of the dying now, she is never
left alone. A friend spells Ro, who sits in the living room, pausing from a
chore begun when Anna began to need less care, cleaning out closets. Some
coats, including a chubby fur coat Ro loaned Anna years ago, are slung over
the sofa back. Ro cannot let rest her disquiet at the medical profession in
general and Miller in particular and insists on making her point for the
record. She is adamant about the medical profession providing a central
clearinghouse for disseminating news to patients through their doctors. She
returns to her long-standing complaint. "Ken didn't encourage
adrenalectomy, didn't try to get my sister to have a hysterectomy, which
might have helped early on. I had one immediately. ... There were just too
many things that were kept in Miller's realm and even though they went
to Hopkins, it was Anna pushing--it wasn't his suggestion." (that is not
so; Miller recommended it.)
     Although perhaps more vehement than most, Ro's anger is not
     uncharacteristic of family members who blame doctors and treatments as
their loved ones die. Anyone who listens to survivors hears far more
displeasure at doctors than praise. Miller says that his patients often
complain to him, blaming their primary doctors for not detecting the
cancer-- just as Anna's father did regarding her mother's initial incorrect
evaluation--but has seldom had it directed with such belligerence at him.
Oncologist E. Roy Berger describes how he has been the "butt of anger and
abuse" from relatives. "The woman on the phone was obnoxious, but her
reaction wasn't rare. Accusations rising from the misdirected anger of
family members is one of the major heartaches in dealing with people and
their diseases. These frustrated relatives are not just venting their
hostilities toward doctors, they are actually blaming the doctors for the
diseases of their loved ones. Even though the irrational wrath can be
understood intellectually," Berger states, such abusive antagonism has a
negative result, with doctors appearing "more and more aloof in order
to mask the aggravation they are feeling." *bled
     Linda Suarez, Anna's cancer buddy and photographer, arrives. She has
heard Ro's comments and says, "I'm going to have to stick up for Ken. First
of all, he saved my life. I should not be alive. And Anna had complete
faith in him." An exhausted Ro, like a bulldog with a bone, does not give
up, arguing her central complaints as Suarez counters in vain. "Patients
shouldn't have to read up on everything on the Internet," as Suarez does,
says Ro. "What if you don't have the Internet? Or a scientific background
like Jan? The patient is not medically trained." Doctors like Miller should
provide vital new information. Linda protests, "It did happen at times like
that! Ken made lots of suggestions that she either took or did not."
     Suarez, knowing Anna's decisive manner, adds, "If she really was
unhappy with Ken, why didn't she leave?" "She actually did talk about that
with me," says Ro. "I don't know, there is a loyalty in her. I can't
explain it." Linda says firmly, "I tell you, Ken adored Anna. He would do
anything in the world for her, and he would do the same for me." Ro gives
no quarter. "I think he put forth what he could --to the best of his
abilities." The argument continues and finally Ro says, "Well, I've said my
piece."
     The two women try to end the discussion on a grace note. They talk
about life after death. Ro says, "Anna and I aren't religious at all, but I
     also believe that we have been here in some form before and come back
again in some form." "When I first started my chemo and was drifting off,"
recalls Linda, "all of a sudden it was like my two aunts, who had died,
were there, trying to put this white plastic sheet over me. I kept
thinking, "You've gotta scream, you've got to wake up, do something!" and
finally I just shouted, "No!" and it all went away. I found that very
comforting because I felt like, "Okay, if you can fight with that magnitude
on a subconscious level, then you have a real fighting chance." I also felt
that to me that was a sign that there was something out there and people
who loved me."
     Linda was fine until this spring. "After seven years, I had it again.
It was like, "Whupp!"-- snapped with the choke chain. I was right back in
the cancer mainstream. After seven years, you kind of go, "La-di-da di-da."
It wasn't recurrence. It was a totally different cancer. It was very small
and the surgery got it. There is no cancer anymore."
     Linda says, more softly now, "Maybe it's a simplistic view. I think
everyone has a time to die. It's Anna's time." Yesterday Linda and Anna had
a private moment when Anna was talking clearly. "She told me, "It could
have been you." And I said, "It should have been me, based on the severity
of my cancer."" (ro says, "It should have been me, more than twenty years
ago.") "Then I said to Anna," continues Linda, ""God's still working on me.
You are absolutely perfect." And I think that's true. A person reaches a
state of grace and then they are perfect. To me, yesterday with Ken was
frustration and panic. I think she would be surprised at herself." Ro lets
that go.
     "She resigned herself that there was no place else to fight," Ro says.
"But she's been very happy with her life. There is nothing that she would
probably do over again. But she wanted to do things she hadn't done, like
go to Australia and watch the water go down the drain the reverse way. She
was fascinated with the fact that that happens when you go to the other
side of the equator." Linda says, "I lived in Uruguay--believe me, it's no
big deal." Says Ro, "But it was something she wanted to see." "I remember
the first time Anna saw Hale-Bopp," recalls Linda. "It was aglow. She said,
"I knew in that instant that I was going to be riding comets.""
     In those hours when Anna talked to her dead mother, Ro says, "I told
Anna, and I wasn't joking, "Mom is pulling you, she's pulling you too hard,
     she wants you back."" Her words cascade in anguish as tears come. She
is stung by a memory. "When my mother died, it wasn't me she wanted--it was
Anna--to take care of her." Linda says, "That hurts." Ro blows her nose. "I
understood why, it was okay--my mother loved having Anna with her. And ever
since my mother died, I have felt this tug. She pulled--and we couldn't
pull anymore."
     "People have the right to let go," says Linda, "and we should help
them." Roseann nods.
     Later that afternoon, four old Richmond friends arrive at the same
time by happenstance. Tina and Lockie drive up together and whoop when they
see the two others, whom they have not seen in ages. Red wine is uncorked
as they sit on the bed, talking to Anna constantly, singing, joking. When
Tina and Lockie say, "Anna, let's party," Anna smiles with her eyes closed.
She also cries with happiness when Tina and Lockie tell her they drove up
together, reinforcing once more that they have made up. Anna gives every
indication that she, like many patients who are semicomatose, can hear and
that it is important for those around her to provide pleasurable moments.
Thursday morning, Anna wakes with a smile on her face and says to her
friends, "Let's party!" The nurse checking her vital signs says, "She's
very happy this morning." Tina says, "She partied last night." Lockie
laughs. "It's happiness hangover."
     By noon on Thursday, May 29, an assembly line of friends are with
Anna. She complies when they gently roll her to change diapers but it
elicits a slight moan. Morphine is dripped into her mouth. Tina warms the
washcloth, sprays it with washing solution. Anna does not protest as her
old friend bathes her bottom. Others reach for ointment and efficiently
diaper Anna. All the while, they speak endearingly to Anna. "It's okay,
babe," says Lockie, leaning close to her. "You're worn out from partying."
Lockie and Tina hug and kiss her. Speaking into Anna's ear, Lockie says,
"We love you. We're going back to Richmond now. See ya soon."
     Anna's last weekend on earth is peaceful. The weather is unseasonably
cold and gray, the temperature dipping down to record-breaking numbers. It
seems like an omen, as if the sun would never shine again. By Monday, June
2, Anna lies still, drifting into a coma. A friend looks at her, shrunken
in size, devoid of her spectacular energy and warmth, and
     hopes, as she kisses her on the cheek, that the end will come soon.
The hospice nurse, Margaret, indicates to Jan and Ro that based on low
blood pressure, low pulse rate, and other signs, she didn't think Anna
would last the week. Jan calls Dottie, who has been on vacation, to alert
her to prepare the children. They know that their mother is going to die,
but they view it as something in the future, not imminent. Jan makes plans
for Dottie to come tomorrow night for dinner.
     By Tuesday, June 3, Anna has visibly deteriorated. "When Annie came
to wash and give her a lotion rub," recalls Jan, "I helped turn Anna. I
noticed several small places on her back where blood was pooling--a sign
that her blood pressure was so low that there was very poor circulation.
Anna's temperature was up to one hundred and four, but her pulse and blood
pressure were actually better than the day before. At Margaret's
suggestion, I zoomed up to Safeway and got some Acetaminophen
suppositories, to lower the temperature. We continued with the morphine
solution, and gave her more Acetaminophen at bedtime."
     Everyone senses that the end is near. "Nancy wanted to take down the
3-D Taj Mahal puzzle, but I wanted to give Lindsay the opportunity to help,
since she worked on it quite a bit. I took some pictures of it and if they
come out okay, I might give them to everyone who helped so much. It was a
strong symbol of group effort."
     Jan and Ro are jumpy. "Being restless, playing the waiting game, we
both found it very therapeutic to clean, and the kids' rooms were in dire
need," says Jan. "We rearranged some things (so that clean clothes actually
had a drawer to go in, imagine that!)." Winter clothes are moved
into another closet that Ro had cleaned out. When the children return from
school, Jan and Ro show them their spotless rooms. Dottie comes that
evening and they all eat Roseann's lasagna. Then Dottie disappears with the
children to the downstairs rec room. "She worked her magic as I guess she
always has," says Ro, "making them able to open up and express their
feelings. It was very helpful for them and came just in time." After the
session, Dottie tells Ro and Jan that they should not have cleaned the
children's rooms. "The one thing Ro and I were clued in to was to leave the
kids' rooms alone! In retrospect, I am in complete agreement with Dottie.
The kids have been subjected to so much coming and going that they needed
to have a space all their own, and though
     well meaning, we violated that space. They are at the age where those
types of issues are very important."
     That night, Dottie says her farewell to Anna. Leaning close, she
reassures Anna about her children. ""I will keep my promise, I didn't
forget it. I will be there." I have no doubt that she heard me and knew
exactly what I was saying."
     Later, as Jan snuggles up to Anna, holding her close, he whispers, "I
love you."
     The next evening, June 4, at six forty-five, Jan writes, "This morning
I awoke about 4:10 A.m. to Anna's labored breathing. Her breathing rate was
slow, but each breath was more as if she was gasping for air, making a
determined effort to hang on. She was also making some noise, which I would
describe as a soft groan as she exhaled. I got up and gave her a good slug
of morphine, stroked her, and talked to her a bit, then went back to sleep.
I got up at six and gave Anna another cc of morphine. Her breathing was
still very labored (it was almost as if she was gasping). Ro came up and we
noticed that there was blood pooling in her toes and heels. I couldn't feel
a pulse at the ankles or wrist and her hands and feet were very cold,
despite the fact that her underarm temperature was 102 plus. Ro and I
agreed that Margaret should be called, because we wanted to know what to do
to make Anna as comfortable as possible. We called hospice to page Margaret
and ask her to come right over. We kept up with the morphine, and I gave
her a little Acetaminophen to ease her temperature.
     "In the meantime, I had gotten the kids up, fed the dogs, made
lunches. Jane Bittner had been scheduled for 7:00 A.m., and when she
arrived, I asked her to take Ellery to school, as I wanted to stay close
by. After Lindsay got off to school, Ro and I just sat with Anna, each of
us holding a hand and whispering to her that she could relax, that she
could go, that everything was taken care of thanks to all her work. I put
on a CD of Rubinstein playing Chopin and turned it up so Anna could hear it
in the bedroom. She was somewhat responsive, managing little groans when we
talked to her and stroked her. The breathing continued to be labored, and
her fingertips and toes got very blue. Ro and I continued to hold her hand
and talk to her."
     Roseann says later, "When I looked at the catheter bag, I noticed that
     there had been a very, very small amount of urine since the night
before. I knew her kidneys were in a major shutdown. At that point, she was
very hot, then cold, then hot."
     The house was very still, except for the voices of Jan and Roseann and
Anna's groans and breathing. They kept soothing Anna, telling her that
everything was just as she wanted it and that it was time to stop fighting
and let go so that she would stop suffering, and giving her morphine now
and then. "She was groaning a lot, but we weren't sure if she was
uncomfortable or what," says Roseann. "It was very hard to know. I think it
was probably just a moan and she was not in pain. Her breathing was very
short and shallow. Margaret had explained to me that when her body shut
down, there would be less and less oxygen to the brain and--although she
was breathing a lot--the breathing was so shallow that the body would not
be getting enough oxygen."
     Meanwhile, the normally frisky Cream became very quiet. She lay
outside the room, looking in. "She looked depressed, and stayed that way
the whole day, and a good part of the next day," recalls Roseann. "It
seemed as if she knew her friend was gone, you could really see it.
     "We continued to talk to Anna and talk and talk and talk over a period
of forty-five minutes. About eight thirty-five, Nils got up and went to the
bathroom and at that point I believe the first of what I call cardiac
arrest started. All of a sudden, she gasped--you could see her chest
expanding, as if she were taking a deep breath--then stopped. She was
breathing again, then it happened again. Jan came out of the bathroom. "I
think she's going," I called. We were both with her. This happened four
times in the space of five minutes."
     "She finally died about eight-forty," recalls Jan. "She stopped
breathing, but she still had a faint pulse visible on her chest. She took a
couple of last-minute gulps of air and then was still. During these few
minutes between life and death, I found that Ro and I were concentrated on
Anna's comfort; grief was not yet part of the emotional milieu. After Anna
had been still for a few minutes, the grief washed over us. We cried
separately, each one taking some private time with Anna, then we hugged and
cried some more. I think we both felt relief for Anna; it must have been
very hard for her to give up, and I think she was conscious at some level
almost to the end."
     Margaret arrived quickly. By now, any disputes with hospice are
history. Jan cannot praise them enough. "Margaret was an absolute gem. She
bathed Anna, cleaned up everything, and got her into a nice pink
nightgown." Jane Bittner also helped with this ritual, deriving comfort in
preparing her friend properly. "I have to say that it worked out for the
best," comments Roseann. "The kids had gone. Nobody else was in the house.
It was as if Anna had organized it." Ro and Jan had their private good-bye.
It is not inconceivable that Anna indeed had waited until the children were
gone to die.
     Jan and Roseann felt that perhaps Anna's body should be removed before
the children came home. Margaret and Jane weren't so sure. "I got on the
phone with Dottie," says Ro, "who said that it was best that the kids had a
chance to say good-bye." As always, Dottie stressed that the children
needed to make their own choices. "If they didn't want to see her, they
didn't have to, but they had to be given the option."
     While Jan left to get the children, Dottie arrived. "Because Margaret
needed someone to be a witness," says Roseann, "I watched as she dumped
medication; we flushed thousands of dollars down that toilet." This
included unopened medications, an incredible waste, considering worldwide
shortages, but it is the law. "You can't even give it away legally," Jan
explains. The funeral home is advised that they would be called for removal
of the body shortly and reminded that Anna had requested immediate
cremation. Says Ro, "We were just waiting for Jan to come back with the
kids."
     "So," writes Jan, "I left to get first Ellery, then Lindsay. I had
asked Ro to call the school counselors and tell them I was on my way, but
not to say anything to the kids. I cried most of the way to Ellery's
school, which is about thirty minutes away, hoping I could cry myself out
enough to hold things together when I got there. I managed to get into the
office okay, sign him out, and meet with the counselor in one piece. We
walked to Ellery's third-period class and I asked the counselor to go in
and get him, as I wanted to create as little disturbance as possible.
Ellery came out and asked what the deal was and I told him I was taking him
home. He asked me why and I held off until we were out of the building,
then I managed to tell him between sobs that Anna had died this
     morning. I think he knew right away, but was holding on, hoping it was
something else. When I managed to get that out, we both cried, and I just
kept us walking arm in arm. I didn't think he wanted his friends to see him
like that. In the car, we had a good hug and more crying.
     "On the way, we were both fairly quiet, me staring ahead and Ellery
with his head down. I did rub his back at every stop sign and manage to say
that this really sucked. Ellery stayed in the car when we got to Lindsay's
school. We arrived just at lunchtime. After signing Lindsay out, I was just
going to the lunchroom to get her, when she and a friend appeared. She had
her lunch bag and a soda in hand, and I put my arm around her and said she
needed to come home. She asked about getting her book bag and I said she
should leave it in her locker."
     Once again, Jan's tears course down his face as he holds his daughter
and tells her that Anna has died. Jan comments, "The crying is extremely
therapeutic. I am blubbering right now as I write this. I have been keeping
my crying time to myself. While time to get with the kids and talk and cry
about things has come up, I feel you need to balance the grief with the
getting on with things. As such, I find that driving in the car by myself
has been a good time to let it all out. It allows one to recharge the
batteries to face the next day, hour, minute. ..."
     It takes Jan four and a half months before he can bring himself
to finish his thoughts. In October he writes, "This has been a long break,
but I will finish my recollections of the day, as they are very much in my
mind, still. We got home to find Ro and Margaret and Dottie there." Roseann
looks at the children anxiously as they walk in. "Ellery was just
unbelievably shaken, he was crying from the depth of his soul," she
recalls. "The first person he walked to was me and he gave me a big hug and
I hugged him back, crying too. Lindsay was very quiet. She went over
to Dottie."
     Jan and the children have their own group hug and more tears in the
kitchen by themselves. "Then I asked the kids if they wanted to say
good-bye to Anna, which they both did. The three of us went in together.
Margaret had cleared away all the medical paraphernalia and Anna looked as
if she was sleeping. All morning had been very gray and gloomy, but when I
was picking up the kids, it turned into a brilliant, clear day. It was
bright in the room. Each of the kids stood and stared for
     a short time and said good-bye. We left the room and had some good
hugging and crying all round. I had decided to take the kids out, now that
they had some closure, so I said we would climb up Sugarloaf Mountain,
since that has been a favorite spot of Anna's.
     "Ro, Margaret, Jane, and Dottie would stay and take care of all the
unpleasant details. I have never asked Ro about the things she had to do
that day. I know it must have been wrenching for her to see Anna carried
away. I am having a very hard time just thinking about it. The kids changed
and we went off, trying to be a little upbeat, deciding that Anna had given
us the beautiful weather. Clear, dry, and in the seventies.
     "We got to Sugarloaf in midmorning and had the place all to ourselves,
since it was a weekday. We hiked up the mountain, exploring as we went all
the little overlooks and big rocks and half-fallen trees we had explored
many times before with Anna. The view from the top is spectacular in good
weather. The breeze was so gentle that everything was absolutely still. I
tried to get the kids to use their imagination and try and see Anna in the
clouds; they thought that was pretty corny.
     "While we were all sad, we were all very aware of a strong sense of
love and unity--perhaps we felt some collective relief that Anna's
suffering had ended. We didn't talk too much on our hike. We decided
to stop for lunch at the Comus Inn, which is nearby and has a wonderful
view of Sugarloaf. The patio was empty, so we got some sandwiches and sat
there, soaking up the warm sun and lovely view. We made several toasts
to Anna, and kept thoughts of her in our conversation. I wanted
to emphasize to them that this was it--it was just the three of us now, and
we had to stick together. We talked about what we thought Anna would want
for us and what we would do over the summer. We also talked about school,
and I let them know it was their decision as to when they would go back. I
also emphasized that we had to talk a lot and tell each other things, that
we would have to try hard to do things together and have dinners together
as much as possible.
     "We touched on various vacation wishes for the summer and Lindsay's
ballet plans for the fall. While we came to the brink of tears a few times
(me mainly), it was generally a happy time. We even had a couple of laughs
over some fond memories. I think we were all focusing hard on the immediate
future, bucking ourselves up by immersing ourselves
     in plan making while savoring the warmth and feeling of togetherness
of the moment.
     "I think subconsciously we were also dreading going home, wanting the
loveliness of the outing never to end. After lunch, we decided to go to a
driving range and hit a few balls, which was a lot of fun, since none of us
is particularly good at it. We talked of Anna and her brother Steve; they
both loved to golf. Golf is a good connection for Steve, as he loves
to teach the kids and will have lots of opportunities when we go
to Florida.
     "The afternoon stretched on, and we had to go. We rented a silly movie
for the evening (i can't remember what, I didn't watch it) and may have
picked up some takeout, I don't remember. I don't remember much more about
the evening. There were some papers I had to sign and phone calls to make,
though Ro and company had done everything-- made phone calls to get the
phone tree going, dealt with the funeral home, called the schools to let
them know we didn't want the kids getting undue attention when they came
back. I can't tell you what a comfort it was to have Ro here, and how
indebted I am to her for that day I was able to spend alone with the kids."
     Jan is a young man of forty-four, but he has lived almost forever with
Anna. For the first time in nearly three decades, since he was sixteen, Jan
is without Anna. For twenty-three years, they had slept together as man and
wife. On the night of June 4, Jan sleeps in the big king-sized bed, without
Anna by his side, knowing that never will she be there again. For Anna,
there had been only one man in her entire life, Jan. He cries himself
to sleep.
     
     Part IV
     Grieving: Our Common Bond
     When we are dead, and people weep for us and grieve, let it be because
we touched their lives with beauty and simplicity. Let it not be said that
life was good to us, but rather that we were good to life.
     Jacob P. Rubin
     The friend who can be silent with us in a moment of despair or
confusion, who can stay with us in an hour of grief and bereavement, who
can tolerate not-knowing, not-curing, not-healing, and face with us the
reality of our powerlessness--that is a friend who cares.
     Henry Nouwen, Out of Solitude
     CHAPTER NINETEEN 304-305
     Love Beyond Death
     No matter how prepared a family is, no matter how thorough a patient
is in prearranging the "unpleasant details," survivors can be overwhelmed
by cold technicalities that intrude on grief at its rawest. Arranging
for the body to be taken away; choosing caskets or urns; signing paperwork
with funeral homes, hospitals, or hospice; writing and notifying newspapers
of obituaries; alerting friends; planning funerals or memorial services--
all are emotion-fraught decisions.
     While Jan waits, the hospice nurse calls the funeral home and they
indicate that Roseann can sign the papers for Jan. As Jan leaves with the
children for Sugarloaf Mountain, the duties for Ro and Anna's friends are
just beginning. Margaret and Jane deal with the removal of the body. At
times, Roseann dissolves in tears and is comforted by Patty and Jane. "I
truly appreciate them because periodically I became a basket case, not
being able to mentally function," she recalls. Funeral home attendants
arrive and take Anna's body, wheeling her down the hall on a gurney and out
the front door that Anna never used while alive. Jane and Dottie strip and
change the bed and straighten up. Roseann and Margaret take care of hospice
papers and then Margaret hugs everyone as she leaves. Dottie also leaves.
Jane and Patty stay with Roseann, comforting her. Ann Wylie house-sits
until equipment is picked up, such as the hulking green oxygen tank that
has sat all this time in the dining room, unused. Jane drives Roseann
to the funeral home.
     Roseann is anxious to complete business at the funeral home. "The last
thing I wanted to do was stress Jan when he got back." But Roseann
     cannot legally sign the document regarding cremation, after all. She
is told that Anna's husband could sue the funeral director, saying that he
had not agreed to it. "It's Maryland law," says Roseann. Jan signs the
paper when he returns from Sugarloaf.
     Roseann has nothing but praise for the small Barber Funeral Home, in
Laytonsville, Maryland, and understands why Anna chose it. Mrs. Barber
encourages Ro to buy their own memorial guest book. "It will save you money
rather than buying it from me." Her attitude is foreign to most funeral
homes now owned by conglomerates, where no expense is spared, so long as it
comes from the pockets of bereaved families. In those cool and darkened
rooms, assistants are instructed to lead families across soft plush
carpets, moving inexorably from the least-expensive to the most-expensive
caskets-- those burnished wood-and-brass silk-lined enclosures that can
cost up to $20,000 or more. Like car salesmen writ large, they pause at the
Cadillacs of caskets, trying to make families ashamed if they opt for
anything less. Cremation has become a growing alternative, but those
expenses can run as high as funerals.
     Because children are involved, Mrs. Barber suggests that the memorial
should not be at the funeral home. "This can leave a negative, lasting
effect on the children," she says. Ro adds, "She was very gracious and
helpful. She stressed some place that the kids could accept, saying that
children seldom get the opportunity to hear how people feel about their
parents and it would be a lasting, positive memory."
     Jan settles on a Quaker-style memorial service and sets it for Sunday,
June 14, because Lindsay has a ballet recital on June 7, and it will give
out-of-towners more time to make arrangements to attend. An anguished
Roseann again urges her father not to come, fearful that the travel and the
emotional pain would be too much for him. They will videotape the memorial
and show it to him when they all meet in Florida in July. She and Jan are
in daily communication with him. "He has been very depressed since all of
this," Ro recounts the day before the memorial service. "I have grave
concerns about him, because of what's happened, even though he was prepared
for it."
     On Friday, June 6, two days after Anna died, an eerie moment occurs.
Jan and friends hear Anna's clear, cheerful voice coming over the radio.
Thousands of listeners who have never met Anna hear her say of cancer,
     "So I am fighting it again right now." Bob Madigan, the interviewer,
says, "Through the chemotherapy, you've lost your hair, but you haven't
lost your will." "Oh, no!" Anna's emphatic voice booms. "Haven't lost your
good sense of humor," says Madigan. "Oh, no! I haven't lost much of
anything. ... I was in the media biz, the marketing and advertising
business, and I had to walk away and say, "It's time to be with your
family"--smell the flowers finally and enjoy myself--and that's what I've
done. And it's really been the best thing." "And the best thing she did for
her two children, eleven-year-old Lindsay and thirteen-year-old Ellery,"
says Madigan, over the recording of Anna, taped just six weeks before at
the Race for the Cure luncheon. "You see, Anna Johannessen of Olney died
this past Wednesday, at home with her husband, Jan, by her side. Anna is
proof the Race for the Cure [to be run the next day] is not just an event.
It's real people facing a very real and deadly disease."
     Roseann repeats often her urgency to "get everything back to normal,"
how the house was "as normal as possible" when Jan and the children
returned from Sugarloaf on Wednesday. This quest for normalcy is a common
reminder of how little time we allow for grieving-- yet being disoriented,
numb, distracted, relieved, anguished is normal at this stage. Lindsay
chooses to return to school the next day; it seems to be her haven. Ellery
stays home, keeps to himself. On Friday, Lindsay performs in a band recital
that the whole family attends. Jan and Ro busily make and field phone
calls, distribute Anna's phone tree to friends to call. When Cliff comes on
Friday, Ro tells Jan, "I really need to get home."
     Roseann feels that they "need to have the opportunity to get started
on their own life together without a fourth party. It's going to be a
bonding and evolution of coming together in a different way. And also,
quite frankly, I felt very surrounded. I went through this with my mother
and now I had gone through it with Anna and it left me with the feeling
of"--her voice becomes strained--"being left to bury everybody and this is
very hard on me." Roseann, emotionally and physically drained, starts
to sob. "It's very hard for me to talk about." Some of Roseann's tears are
for herself, feeling that a heavy burden has been placed on her due
to life's circumstance. She doesn't mention that she may feel, as some
designated family caregivers do, that no one really understands what a task
this is. She is grateful for every Anna friend who appreciated her.
     Anna's preparations make this time so much easier for her family and
friends. They zip through the telephone tree, contacting people in no time.
The two cars in Anna's name had been transferred to Jan and their other
possessions were jointly held, thus saving Jan from the emotional blow
experienced by many survivors--having to, in effect, cancel a loved one out
of their lives. Still, there is much to do in the days preceding the
memorial service, says Jan. "Making arrangements, talking with friends and
relatives, getting to ballet rehearsals and recitals, going to the schools
to talk with the teachers and counselors, getting to work as I could,
cleaning the house, fetching relatives, visiting folks, writing notes.
Dottie came, and reinforced my sense that Ellery should go back and face
school, for emotional reasons, and he did that week. I didn't want him
to go through the summer wondering and worrying whether he would cry when
he saw his friends and teachers in the fall and I didn't want him to feel
badly about not having had the courage to do it (especially in light of
Lindsay's decision). He had a couple of tough days, but the stress of worry
about Anna was relieved."
     There is one task Anna never finished, and that is her obituary. She
had planned to write it--"That way, it will be right"--but she left nothing
in writing or in her computer. A friend uses Anna's resume to help compose
the piece. Unless one is famous or prominent, obituaries are about as
personal as tax return forms. A reader learns where the deceased went
to school, worked, what he or she died of, the names of survivors--but
these bloodless accounts reveal nothing about how the person lived or the
impact he or she made on others. Within those confines, Anna Johannessen
was duly observed in the Washington Post and the Richmond Times-Dispatch.
     One final act, however, is pure Anna. Anyone who knew her even
slightly smiles when they learn of it. One day, when she and Roseann were
discussing cremation, Anna said, "I don't want you to buy any urn, we have
plenty of things around here to use. How about the cookie jar that you gave
me?" Roseann stared at her. Years ago, when Jan and Anna were first
married, Roseann bought them a Cheshire cat cookie jar. Roseann recalls, "I
thought it looked like Anna. It had that funny grin and was humorous." The
Cheshire cat cookie jar is tucked under Ro's
     arm as she goes to the funeral home. It is white ceramic, with a black
bow of a grin, whiskers, and mischievous shiny eyes. No one who knew Anna
can think of a better final resting place.
     A memorial service, often termed a "celebration of life," has
increasingly become a substitute for the traditional funeral. Some in the
death education field warn that such celebrations should include
recognition of major loss; such finality allows the bereaved to give vent
to full mourning. For many who are less steeped in tradition or eschew
somberness, an occasion that combines love and laughter, taking on the
aspects of roasts as well as toasts, is an appropriate ritual. Certainly
Anna felt that way. How could anyone forget her written request not to have
"some blowhole giving a speech about me when he or she didn't even know
me."
     On the other hand, there are those who find great comfort in and would
feel deeply incomplete without a church or synagogue or other religious
service. There are as many variables as there are individuals. Ken Doka, a
minister who trains funeral directors, says, "With Anna, some of the things
that funerals can do to help tell you about the reality of death were
unnecessary; her survivors had been actively involved and had witnessed it.
And Anna's wishes didn't contradict the rest of the family. In a situation
where that was not the case, I would go with the survivors. The one problem
I have with the celebration of life is that it should acknowledge the many
ambivalent feelings that people have--"we're glad her suffering is over,
glad it's over for us, but we still miss her." That has to be validated.
And that's a funeral--no matter what you call it. A funeral is a ritual
that surrounds death." William Lamers, physician and psychiatrist and one
of the founders of the American modern hospice movement, invented a
definition of the word "funeral." "It's been published all over the world,"
says Lamers. It's as inclusive as it can be, yet succinct: "An organized,
purposeful, flexible, time-limited, group-centered response to a loss."
     "When I train funeral directors, I tell them to ask families to talk
about rituals and funerals that meant something to them. "What are the
things you liked? What are the things you hated? What do you want to see
avoided?"'" says Doka. "I don't teach directors to tell families what they
should do. The art is not giving advice; the art is asking the right
     questions, and you can only do that by listening--to the verbal and
nonverbal--and recognizing that communication is very complex."
     Anna's celebration of life is a special page out of Americana, as more
than 300 friends and family gather in the Olney Lutheran Church of the Good
Shepherd social hall, not the church itself. It is June 14, 1997--ten days
after Anna died. The service starts late, as they wait in a long line
to reach the front, where a casket or urn might have been. Instead there
are two large display boards, filled with snapshots and enlarged pictures
of Anna in wide-mouthed smile and laughter, the glamorous mixed with the
clowning. More are placed on a table that holds the guest book. In one,
Anna is clumping on the sand in a black bikini, wearing flippers and mask,
arms outstretched like some crazed bird, her long hair trailing, looking
like the Creature from the Black Lagoon. In their wedding picture, Jan and
Anna look like kids, mouths wide, ready to burst out of the frame. Friends
have come prepared, some with brand-new Kleenex boxes placed by their
chairs, but the many grinning faces of Anna produce smiles.
     In this Family Life Building, children's rainbow pictures decorate,
rather than stained glass. Folding chairs, instead of pews, line the room
and face the "altar" of Anna pictures--a comforting, encircling U-shaped
configuration of friends. Some friends wear black, but several know that
Anna would want brightness. Patty Williams, who held Anna against her chest
so many times in those days when she was fed water or morphine, is in
red-and-white polka dots. "I picked out the brightest dress I could find
for Anna." Jane Bittner wears a bright peach top and white slacks. Anna had
requested intimate informality and, although there is the scattered tie and
sports coat, the mood is more of a summer's picnic moved inside--children
in shorts and sandals, women in flowing skirts and blouses, men in shirts,
infants cradled in arms. A cross section of ages, races, and creeds
comingle. Roseann wears a cream jacket and black slacks, Cliff is in a
brightly patterned shirt, Anna's trim mother-in-law, Phoebe, wears slacks
and a white shirt. Jan is in a bright blue golf shirt, Ellery in a white
one, Lindsay in a midcalf blue skirt and white blouse. She and Ellery, both
so tall, slim, and attractive, stand frequently as friends and family hug
them continuously.
     Although Anna had instructed Wayne to be her music director, Jan
     bypassed music, opting for uninterrupted expressions of bearing
witness. It seems perfect. There are no prayers, no dignitaries, no
official speakers, no clergy, no flowers. Anna had requested that donations
be sent to the Olney Ballet and the St. Francis Bereavement Center instead.
Jan begins with a casual greeting, explaining that Wayne will be moving
throughout, making a video, especially for Anna's father and for posterity.
"So if any of you are on the lam from the CIA ..." Jan's sentence is
interrupted by welcoming laughter. Although it is sad without Anna, says
Jan, that is not the thrust of the day. "Anna would like to see lots of
smiles. It's important to note that today would have been her mom's
eighty-third birthday." Jan's voice rings out clearly, trembling only
occasionally. "I'm going to get started and if anyone wants to get up, just
go ahead.
     "Three words describe Anna," he begins, ""courage," "compassion," and
"justice." When I think about courage, I've never known Anna to back down
from anybody or anything. When she ran into something or some kind of a
problem, she'd take it on straight on. I'm kind of reminded of that little
cartoon you sometimes see around offices, of the frog who is about to be
swallowed by this large bird. And the frog's lying down, he's got his hands
around the bird's neck [he demonstrates, to much laughter], and the caption
says, "Never give up." That frog took lessons from Anna. And in terms of
compassion, although Anna was a fierce competitor, if there was a friend in
need, she was always willing to lend her time or money or help out or offer
a place to stay, anything like that. And as for her incredible sense of
justice, Anna had a real thing for things being right. In this day and age
of finger-pointing and assigning blame to this, that, and the other, Anna
was probably one of the most honest people that I ever met." Jan chokes,
tears descend. "And I think that everyone would agree to that. That was one
of her really special traits. Many people have those traits, but Anna had
an absolute commitment to hold on to them. Just uncompromising.
     "Anna had a great sense of fun and adventure and was always willing
to try something new. I remember one of the things that Anna was never able
to master, although she always tried, was waterskiing. [Laughter ensues.]
Starting back when we were in college, Patty and Jimmy, who are here, went
out with Patty's folks on their boat on the Severn River. Anna just
couldn't quite get up. She'd be going along
     halfway out of the water, but she wouldn't let go. And she'd try again
and again. You would see this huge wall of water [there is huge
laughter]--and she just wouldn't let go.
     "The final thing I want to say is about Anna's sense of friendship.
Many people in this room I would not have met had it not been for Anna. She
had a real ability to be friends with everybody and pick up on everybody.
Lots of people who had just met her have this sense of wanting to sit down
and tell her their whole life story. That quality had led me to the
conviction that women really are the glue that holds together families and
communities and societies."
     Voices chant, "Hear! Hear!" Immediately friends bear witness one after
another--from high school and college, colleagues in Anna's various
careers, the Richmond pals, relatives. Comedians would be lucky to have
such willing audiences as friends and family provide on such occasions.
Jimmy has them howling with his reminiscences of college life in the form
of a letter to Anna. "Remember Lloyd--the only person to be listed in the
phone book as an alias? ... Remember when we measured everybody's mouth?
[Laughter.] And yours was the largest? [Guffaws.]"
     Lockie picks up the postgraduate days-- how they met, a gardening
truckload of chicken manure fiasco, the time Lockie's dog got drunk on
paint stripper and Jan raced out with his medical book and a solution of
hydrogen peroxide and water. "Anna gets this big turkey baster and pumps
this solution down. ..." Lockie blows her nose. "She saved my dog's life.
... And Anna could never let an injustice stand. I had a bad relationship
with my mom. Oil and water. After Anna became sick, she just couldn't see
that rift remain. So she writes a four-page letter to my mother and says
everything I'm sure I never would have said. Mom called Anna and said,
"Lockie's so lucky to have a friend like you." Now Mom and I are best
friends." Lockie chokes back tears. "When Anna's cancer got worse, I told
her, "Anna, if I'm going to lose you, you're going to have to be my
guardian angel. ... I will carry you with me.""
     Terry Snyder, a tall man with dramatic flair, relates a pathetic
Shakespeare players performance. "Anna was stage manager for Two Noble
Kinsmen, a strange story--and a much stranger director. I was one of the
two noble kinsmen"--he pauses--"and I wore a dress. ... Through it all,
Anna made it a good time and made us understand that being
     together was more important than whatever we were producing on the
stage. She's been my friend ever since. I miss her."
     Connie Giordano, her Happy Feet Shoe Store partner, addresses Anna's
oft-mentioned genius for making instant friends. "She could reach right
inside you and she always had faith in the people that she loved." Jan's
older sister, Lisbeth, stands, addressing "Nils--we never call him Jan."
She reads two poems, one written at the wedding, August 17, 1974; the other
dated yesterday. "It came to me last night." Jan is moved to sobbing. His
sister comes over to hug him. His mother races over from her chair on the
opposite side of the room to hold him.
     Jane Bittner says, "Anna made OCBT [Olney Children's Ballet Theater]
what it is," and speaks of her courage. "When there would be a technical
rehearsal at five-thirty, Anna would only say, "I might be a little late. I
don't get out of chemo until five-fifteen." I'd say, "You don't have
to come, it may be too hard," and Anna would reply, "Just get a mat out in
case I need to lie down.""
     Several women testify to Anna's giving them the confidence to try new
careers. One adds, "The thing I remember most about Anna is her inner
beauty." There are nods of awareness around the room. "I always felt like
Anna was an angel here on earth. ... I know she is happy." She cries.
"She's not hurting anymore and that's a comfort to me. The last time I saw
her was on Mother's Day and I told her how much I admired her--she was a
wonderful mother. She said, "Finally I've played all my cards." I told her,
"They were really damn good cards!""
     Tributes continue, poetic and funny, halting and assured, sad and
uplifting: "Anna was a six-speed convertible Corvette--red, of course--and
God left out speeds one through five." "Sadness and Anna are an oxymoron,
like military and intelligence." "I can't think of Anna without smiling."
"Everything I ever learned about life I learned from Anna." "She got
involved with the Race for the Cure so others would not have to go through
what she did." "I want to be just like Anna, she is my hero."
     Roseann winds up. "She was my baby doll. My live baby doll." She
pauses. "She was my best friend ... and everything everyone said here is
true. She emulated our mother in many ways--but Anna also came from another
place. A very special sister. How much it means to hear how all of you
loved her! It helps me get through this. Thank you per-
     sonally for the unbelievable love expressed to my sister. You don't
see that in today's world. I think it helped my father, who is having a
hard time with this; understanding that she was not alone."
     If one has to lose the battle with cancer or any other disease,
Roseann's final comment proves that love does last. "The love poured out
was love poured back."
     Kleenex tissues have piled up, along with the laughter, and Jan says,
"I just want to say, "Let's blow our noses--and let's party!""
     Much later, Jan recalls, "I had a difficult time getting through the
memorial, but was helped by looking at the sea of friends and relatives.
Many of the kids' teachers and friends came as well." Being surrounded
by their own friends helped Ellery and Lindsay immensely; they smiled more
than they cried.
     Guests plow through a sudden summer thunderstorm, soaking shoes in
puddles, and the house soon explodes with people, laughter, and noise; many
of Anna's friends are as gregarious as she was. Throughout the house are
displays of even more pictures of Anna and friends and family. Miraculously
the rain ends so that the crush spreads onto the deck, where buckets of
white and red wine, champagne, and beer will soon need replenishment. Every
conceivable horizontal surface in the dining room is loaded with food, and
one guest, carrying hot pizza, lifting the tray high over the heads of
guests, barely finds room.
     An unbelievable mix--from scientists to clowns, from dancers
to baseball players-- shmooze together. "Look at the people she's touched,"
says Christopher Hudert, the young, attractive boss clown at Ringling
Brothers. "For one person to do all of this in such a short life. Nothing
was impossible for Anna; it was not "No" but "How can we?"' She was always
one step ahead, in the jungle cutting the growth down. She wasn't a team
player, she was our team leader." No one can think of negatives-- Anna
could be stubborn, not graceful at accepting compliments or help, but what
was that compared to her magnanimity? She was never yucky or saccharine,
never bragged about what she did for friends. Peggy, Hudert's wife and also
a clown, says, "The only negative is a positive. Everyone she moved on from
could have still used her."
     The community baseball crowd gathers: "Over the years, she got
     really good--a good hitter, fielded balls. She came last year, half
her hair sticking out of baseball cap, but she was still hopping around.
She played left field," says a woman named Lorie. A man interjects, "When
she'd catch one, she'd raise her hands," imitating the jock Yesssss! moves.
"Everything she did was contagious," says Lorie, who works for a plastic
surgeon. She remembers Anna's disinterest in breast reconstruction--""I
don't need that"--and that was very inspiring. She was very comfortable
with herself. She taught me--and this will stay with me forever--that she
lived to live. She didn't live to die, even though she was dying; she'd
take it as long as she could handle it."
     Male teammates talk about why they liked Anna. "She was a great
character. ... She'd jump in the pool and play with the kids." "She didn't
give a damn--she went out to have fun." "She was one of the guys. She got
the beer --or the scotch." Janet Carbone recalls, "I had only heard of Anna
through Bill." She lowers her voice in tough-guy imitation of her husband.
""She's the broad plays baseball and she's got cancer and she hits the
ball. ..." It didn't affect me. I didn't have cancer. Then I got ovarian
cancer. People didn't want to talk about it, but Anna was right there. She
was an inspiration. If she could kick it, I could kick it." Janet pauses.
"She's not kicking it anymore--but she went down like a trooper."
     In another corner of the deck, a sailing friend, Chuck Shasky,
recounts an insane sailing adventure with novices Jan and Anna and the
nephew of a Saudi sheikh in 1982. Jan and Anna thought they were going on a
pleasure ride; they hit thunder, lightning, and violent rain--then found
out they were actually in a race on the Chesapeake Bay. As fog rolled in,
they crossed the finish line. "We had won! With three rookies on board!"
recalls Shasky. "The sheikh guy said, "Let's go to the Chart House
to celebrate! This is on me!" We were just soaked slimy. Needless to say,
Anna enjoyed the largesse of her newfound friend and led the partying."
     Roars of laughter come from the far corner of the deck. Christopher
Hudert is showing how to cure neck pain. He takes one arm and turns his
neck--creating the most godawful cracking sound. Hidden in his armpit is a
plastic cup; unnoticed by his audience, he presses that arm to his side,
creating the intense cracking sound precisely as he turns his
     neck with the other arm. It seems more hilarious each time. Children
start imitating him, and as the evening wears on, so do adults.
     Down in the rec room, sprawled every which way, are Lindsay and Ellery
and a band of adolescents, watching a Schwarzenegger movie.
     As darkness begins to fall and the plastic cup supply is being noisily
depleted behind him, Wayne stands in a corner, looking forlorn for a
minute. "Don't kid yourself," he says. "Anna could be as depressed and
lonely and negative as everybody else. But she chose to look beyond that."
When she met an unlikable person, "she could cut to the chase pretty
quick--but at the same time, she believed you had your universe and she had
hers. Her perspectives were just incredible."
     Wayne makes the most important point of the day. "Anna wasn't "trying"
to be good. She wasn't "trying" to be all these things that people loved in
her. She didn't work at it. It was just there."
     CHAPTER TWENTY
     How to Go On Living
     For Jan, the long, slow process of grieving and learning to live
without Anna brought vast sweeps in emotions. At the memorial service, a
friend had warned Jan that after everyone is gone and ordinary life
resumes, "things can get real quiet." Jan frenetically avoided such
solitude. He took the path journeyed by many in grief, the fastest highway
he could find. He and the children whirled from one activity and location
to another--Florida, North Carolina, Seattle.
     Although the Fourth of July trip to Florida was bittersweet--"We all
had our sad hugs at various points"--Jan took pleasure in how elated Anna's
father was to see them. "His subliminal fear that we wouldn't visit now
that Anna was gone evaporated immediately." Jan's experience reminds one
of the saying, "Grief shared, is grief diminished." Roseann was there also
and many of the family gathered with them to see the videotape of the
memorial. Anna's father was very impressed with the outpouring of love for
his daughter. Says Jan, "I think it helped him with closure." It was hard
on Jan. "I started to watch, but had to leave and take a walk after a
couple of minutes."
     Later that month, the trip to a beach in North Carolina with Jan's
siblings took on all the aspects of a troop movement. The clan flew
into Washington's National Airport from Seattle, Minneapolis, and St.
Louis. "Full carloads to the beach, then masses of people sleeping all
about the house on returning to Olney," recalls Jan. "We all had a really
marvelous time--some twelve of us." It was wonderfully therapeutic for
Lindsay
     and Ellery, who raced with the other children on the beach, swam, flew
kites. "The first night, we had a full moon," recalls Jan. Several of the
grown-ups and Lindsay and Ellery walked along the beach in the moonlight.
"I had brought some of Anna's ashes. In the last-minute chaos which always
precedes trips, I looked around for something to put some of Anna's ashes
into, and not finding anything obvious, grabbed a jar of instant coffee,
dumped out the coffee, rinsed and dried it, and put some ashes in. You
remember Anna and coffee--she would have approved.
     "We stood calf-deep in the surf, looking directly into the rising
moon, each savoring a few memories of Anna, as we tossed her ashes to the
wind and surf. We all surrendered to the emotion and gathered to hug and
cry." Like many who have recently experienced the death of someone they
love, Jan saw Anna's hand in everything that was pleasurable. "We were all
struck by how marvelous it was for Anna to arrange for such a perfect
confluence of natural phenomena."
     Then came the inevitable crash. "The week after the beach was our
hardest up to that point," recalls Jan. "We were all very depressed by the
sudden transition from hubbub to lonely quiet. This was the first week
since Anna died that we didn't have plans to make, so the weight of losing
Anna really hit us with full force. We three had been on our own plenty of
times before, while Anna was traveling, but that she would not be back
became real. I would have this odd expectation that she would call any
second or think there would be a letter from her as I walked down to fetch
the mail. None of us could really muster enthusiasm for doing anything, and
we all withdrew.
     "Lindsay, who had been very strong, had a very hard week and cried a
lot, as we all did. She watched all the Star Wars movies every day --at
first for diversion, perhaps, but I think she was drawn to the strong
symbolism of Princess Leia, identifying with her as a brave girl with no
mother. Not a bad role model, and not all that inaccurate."
     Jan rouses himself to get the children off to Seattle, a week before
he will join them. Jan plans to use this time to catch up on the residue of
those busy months--thank-you notes, sorting pictures and medical files--but
he lacks enthusiasm for such tasks, a common lethargy that often
accompanies grief. A friend talks to him on the phone and thinks Jan has a
cold, but he has been crying. "I have definitely found the ther-
     apeutic effects of crying," Jan says poignantly, months after Anna's
death. "Afterward you feel like you've run ten miles. It's a release."
     In the roller coaster of grief, Jan can be laughing one moment, then
crying the next, can go from having a good day to one of shattering
depression. Moods can shift over the smallest happenstance. The day after
the children leave for Seattle, Jan reaches for pages on a cluttered desk
and finds Anna's glasses. He crumples on the sofa, clutching them and
crying.
     Self-pity would be understandable, but Jan does not indulge in "why
me?" pursuits. "Sure, you get angry and envious at times when you see happy
couples and families that are whole, but I never felt it was an isolated
instance that was set upon me. Somebody at work whose brother died suddenly
a year ago said he felt like the only person that such a bad thing ever
happened to. I always felt that if you woke up to food in your mouth and a
roof over your head, you were probably better off than ninety-nine percent
of the population. In this case, I do have something to bitch about, but it
is not unique. It happens every day to lots of people. Certainly single
parents can relate and I know there are lots and lots of widows and
widowers. In fact, this is a source of strength; I look at how many fairly
ordinary people have done this and I think, "If they can do it, I can do it
too." People say that support groups help you realize you are not alone.
But I already know that." Jan knows that he is among millions who lose
loved ones each year. Anna, in fact, was one of 47,000 women who died of
breast cancer in 1997.
     While such facts can give one perspective, it should not be expected
to lessen grief. "We ask people to have a perspective that is really
unfair," says bereavement counselor Ken Doka. "I remember I got very angry
at a fifty-five-year-old woman who had lost a breast to cancer. I was very
new at this and very young, and that view probably reflected a little
gerontological insensitivity, but part of it reflected anger. Here was this
woman who had a very, very good prognosis who was complaining about the
loss of her breast, while I was upstairs dealing with eight- and
four-year-olds who were dying. But now I would think differently. It's the
old saying that the worst loss is the one that happens to you. For her,
that was devastating. I hate that old proverb "I cried because I had no
shoes until I saw someone who had no feet." It's still kind of hard being
without shoes."
     "No one gets over a meaningful loss," reminds psychiatrist Stephen P.
Hersh. "We just place losses in our personal kaleidoscope. We try to live
without constant pain." *1 Grieving over the loss of a child may last a
lifetime; for a spouse, it may take years.
     A common grieving pattern is loss of sleep, although Jan has not
experienced this often, even as he sleeps in the bed he shared with Anna
for so long. "Except," he says, "for the night of the memorial." The
clowning wedding picture on the bedroom wall had been taken down for
display at the service. As Jan went to bed, he noticed the empty spot on
the wall. After tossing and turning, he went out to the living room, found
the picture, and placed it back where it had been for years. Only then
could he sleep.
     Casting one's mind back to the final days of dying is a common grief
reaction, searing at first, then lessening with time. Jan's reverberating
memories fit this pattern of intense preoccupation with the past and a need
to relive events over and over again. "What haunts me is the private mental
anguish she suffered when she realized she was going so rapidly. For a
short time after our trip to Florida, in April, I would say her quality of
life was still good. She was still able to have fun with family, walk on
the beach, go to the planetarium and see Hale-Bopp. But when she started
to have difficulties remembering or losing part of a day altogether, she
was deeply distressed. The realization that she had deteriorated to the
point that she wouldn't be able to finish such things as leaving last
messages for the kids frustrated her terribly."
     Sheer determination propelled her to the panel discussion three weeks
before she died, but that resolve "couldn't reverse the disease and her
unstoppable mental deterioration," says Jan. "That must be one of the most
terrifying experiences imaginable. Had Anna felt that everything had been
completed, I think she would have fought her death less. Jane was wise,
realizing the source of Anna's frustration and cluing the caregivers that
we needed to continuously reassure Anna that everything was taken care of,
that the kids and I would be okay, that she had done a wonderful job of
organizing everything, and that she could let go with a clear conscience."
     Giving the dying person permission to die is, in fact, one of the
cornerstones of hospice teaching. Robert Abbo, a Washington restaurant
     owner who shared the business with his mother, recalls how she simply
refused to die. Finally a hospice nurse soothed her, recognizing the one
concern that his mother could not assuage. She told her that the restaurant
was going along fine without her and that, in fact, there was a full house!
That was all Mama Abbo needed to know. She died soon thereafter.
     Although Anna had no fear of death, for someone so used to being in
control, giving up was excruciating. As Anna said in the panel discussion
just twenty-one days before she died, "Until this, I was never, ever high
maintenance at all. I was always, "Leave me alone. I can do it myself.""
Assuaging her concerns "helped Anna and gave her some comfort," says Jan.
"But I know she was still fighting at the very end."
     Those who have been able to care for the dying may have an easier time
in their grieving. It is a comfort to Jan. "I feel good about the fact that
I was able to keep Anna at home in her own bed. Though Anna couldn't always
speak or respond, I know she was aware of her surroundings until the very
end. I was able to do this only because of the outpouring of help from Ro
and many close friends who organized themselves into shifts to come and
help. I will be forever grateful for their unselfish generosity. I could
not have done it by myself."
     In keeping with Anna's reputation as the Queen of the Thank-You Notes,
who never let the smallest present or the smallest gesture go by without a
rapid thank you, Jan early on set about the task of answering hundreds of
condolence letters. One of the first was to Ken Miller. The doctor had
written a long letter to Jan and the family that was an outpouring of love,
reminiscence, assurance, and mourning. "I know that I lost a friend this
week. ... There was, for me, tremendous joy in getting to know Anna, who
was one of the most outstanding individuals that I have ever met. Anna's
unique gift of oneness, honesty, warmth, spontaneity, humor, and goodness
were all rolled up in one person. ... Her openness and her willingness
to talk about her own illness and about dying have helped me as a doctor,
but even more as a person." Miller praised Jan --"each step of the way you
were there for Anna to provide your love and support." He lauds Jan's
ability to keep her at home with the family. "I know that is where her
heart is. I will be thinking of you and I will remember Anna in my heart."
     Jan thanked Miller for coming to see Anna, then added, "and [to]
     apologize for what I later learned was not entirely a pleasant
interaction. I want to reinforce what you already know, that Anna does, and
has always, thought the world of you. During the couple of days she was in
her excited state, she also let me, Ro, and anyone else who was around have
it about one thing or another." He reiterated the reasons why Anna had
fought her death. Then Jan enclosed a letter that he had found on Anna's
computer, written two years before when her treatment did not seem to be
working. It was intended to be read at the end of her life or after her
death.
     "By now I am either in a comatose-type state or I have boldly gone
where I have not gone before," wrote Anna. She thanked Miller for giving
her "a very special gift--time. I know it is so hard to put on a "happy"
face every day when you see your patients and suspect the worst for us.
Well, my Star Trek pal, just remember, focus on the joy of the life that
each person in your office is getting for whatever time they have! ... The
choices and decisions are ours, the recommendations are yours; you cannot
make the decisions for us, so don't be so hard on yourself. Read that
again--don't be so hard on yourself! And don't be afraid to get close
to some of us. Sometimes it is the people who have to confront death a bit
abruptly who are filled with the most life and they can remind you how
to live it. ... I am so glad that I was given the time to bring just that
bit more of joy and tomfoolery into the world. I owe much of that to you,"
she writes, then includes his partner and staff. "... Coming into that
office was like visiting a second home. ... You guys make your patients
feel so comfortable, wanted, and welcome. ..."
     Anniversaries, birthdays, holidays such as Christmas and Hanukkah and
Thanksgiving, New Year's Eve, Mother's Day and Father's Day, Passover,
Easter, Bar and Bas Mitzvahs, weddings, confirmations--all of these special
events that celebrate the togetherness of family and friends--can be
especially traumatic, so much so that grief counselors offer special advice
on how to get through them. "How Can I Handle That Empty Chair?" is the
headline in one bereavement newsletter at Christmastime. A group of widows'
responses to that question were varied. Some changed traditions, moving
to a buffet instead of a sit-down dinner. Some asked the eldest child
to take the place of the father, reaf-
     firming the family of its own continuity even in death. Yet another
left the chair empty to remind everyone of their loss, which for them was
therapeutic. And a take-charge survivor said, "I sat there!" *2
     While a real trauma, the empty chair is also a metaphor for the
especially difficult significant events. As time goes by, sometimes the
dreaded anticipation of an upcoming anniversary, a summer's vacation spot,
or activity shared in the past with the deceased is worse than the actual
reality. Facing it sometimes brings closure. Grieving survivors are given
some helpful hints: Acknowledge grief work is real work that can leave one
unable to deal with extra demands of the holiday season. Exercise and
relaxation techniques are priority measures to deal with stress and
depression. Plan ahead--perhaps do things differently, take a trip; a
change can be helpful if one recognizes that it cannot bring an end
to grieving. Others, conversely, need to settle in with loving friends or
family members as in the past. Follow your own dictates. Don't fight with
your emotions. Whatever they are, they're normal, including getting angry
or resentful of others' happiness, and sudden bouts of sobbing. It is, in
fact, helpful to build in time and places where you can withdraw from
festivities for private time as the mood strikes.
     Communing with the departed loved one about what you are experiencing,
or recalling fond shared remembrances of holidays past, is not a sign of
disorientation. Rather, it can be an aid in absorbing the reality of your
loss. Many survivors, unfortunately, feel guilty if they experience moments
of joy and laughter, as if that somehow cheapens their grief. For Jan and
Anna's friends, this guilt was nonexistent; Anna would have approved, they
all knew. Remembering the dead in a way meaningful to you provides valuable
connection--whether it be lighting a candle, viewing home videos, writing a
letter to the loved one, looking at old photos. And don't forget interludes
of emotional and spiritual respite--a quiet walk, meditation, prayer. *3
     In August, Jan had joined his children in Seattle and had a wonderful
day of hiking with them on Mount Rainier. Then he was socked in the stomach
the next day, August 17, 1997. This would have been his and Anna's
twenty-third wedding anniversary. "I had a hard evening, staying awake 'til
about three A.m. two nights in a row, alternately crying and trying
to occupy my mind with a who-dun-it." Yet, as in many steps
     along the way, Jan was helped by friends and family and coworkers. He
remains appreciative of the thoughtfulness of his brother, Erik, and his
wife, Lisa, who had spent the day before with them, without mentioning or
celebrating their own anniversary. "I feel sure they decided to keep quiet
about it because ours would have been the next day."
     A friend visits one hot Saturday afternoon in September when the
family returns. Anna's absence sits heavily in the house; a strange, empty
silence permeates the rooms. Jan is digging up the garden with a friend,
sweating as he turns the soil. A handful of Anna's ashes are mixed in,
to commemorate her favorite tomato patch. On Anna's birthday, October 2,
Jan climbs up Sugarloaf Mountain once more and scatters some of Anna's
ashes. "Strangely, Anna's ashes have no strong meaning for me. I had no
problem picking them up at the funeral home. I do find it meaningful
to take some of the ashes with me when I go places that were special to her
and scatter them. But when I am thinking of her, I do not feel drawn to her
ashes, which are stored out of sight; I'm not sure how the kids would feel
about the cookie jar. Nor do I avoid them. They are simply there, remnants
of her body, but not of Anna."
     The need to have a connection with the deceased is common and can take
many forms. In the fall of 1997, Jan throws himself into every single task
Anna had executed for the ballet's Nutcracker performance. He seems driven
to be her stand-in, bringing her presence close to him and everyone
involved. He distracts himself from grief to the point of
exhaustion--personally posting thousands of announcements, taking all the
pictures, writing and producing the program, handling the ads. He and Jane
Bittner wisely provide a role for Ellery, who dances onstage with grown-up
@elan as one of the parents. Jan has graduated to the role of the tipsy
grandfather celebrating Christmas Eve. During dress rehearsal, Jan sits
part of the time with a friend, enthusiastically explaining how they made
the layer of fog that was rolling across the stage during a dream scene. He
smiles at Lindsay, the youngest of the troupe to perform a multitude of
roles. It seems in that moment as if Jan has completely integrated Anna's
death into his active life. It is cathartic that they are all so involved
and have a common project to occupy their time, he says.
     "Given the hard time I had during last year's performances, I was
dreading them this year, assuming I would be a basket case after every
show. To my surprise, as I watched from the wings, I found myself happy and
smiling," he recalls. "Not that I didn't get misty-eyed on occasion, but
overall, the experience was a happy one. It seems that doing the show was
helping me make a transition. Happy, fond memories of Anna were taking the
place of anguished recollections of her suffering and death. I would sense
she was smiling with me as I watched all the elements everyone had worked
on for months all come together to create a magical effect. The entire show
was a worthy reflection of the enthusiasm and positive energy Anna's
presence would have brought." Unperturbed throughout the shows, Lindsay had
her moments of lonely sorrow afterward. She sobbed in the dressing room
when she saw other mothers coming back to hug their children. Soon she was
laughing at the cast party.
     Jan's rosy recollections are balanced by a later reality of
"Nutcracker madness," as he terms those driven days. "It really was too
much." Frantic activities that helped to occupy them ultimately would have
become stressful under normal circumstances. "But the magnitude of my
emotional swings was magnified," he recalls. Jan's duties running the
household were already stressful. "Many days went smoothly, but there were
several when I felt I was drowning in a confusing sea of grief, anger,
guilt, loneliness, frustration, and hopelessness. (i still have those days,
and I'm sure will continue to have them). On bad days, I would feel
pressured to finish things, then more duties would pile up. On top of
supreme frustration, I'd be feeling guilty that I couldn't juggle all the
responsibilities with the same cool matter-of-factness that Anna had in
spades. Layer on this a sudden pang of loss and sadness and abject
loneliness and lack of direction. Despite the bad days (maybe one a week),
things got done."
     Despite, or perhaps because of, the children, who are countless
reminders of Anna, Jan experiences the special loneliness of a widow or
widower. "Until now, I have never really known the meaning of loneliness,"
Jan says in the early days of 1998. "I've always enjoyed solitude, and have
cherished occasional quiet afternoons sans family. When I was in graduate
school, I remember thinking it odd when one of my single fellow students
said how she hated living alone--but I was confusing
     solitude with loneliness. When you are by yourself, you are not lonely
when the connections to significant others are possible, but when they are
simply gone, what is left is a gaping hole. While that is a clich`e, it is
the most accurate description and can't be fully appreciated until it is
experienced.
     "The consequences of loneliness shadow many aspects of
life--motivation, for example. Many of the things I enjoyed doing was
because I was doing them for or with Anna. It is no fun to fix a gourmet
dinner if no one is there to appreciate it, for example. For now, I don't
take pleasure in too many activities, though I know that will gradually
change." When something exciting or fun does happen, says Jan, the luster
is lost "when you realize the person you most want to share it with is
gone. The kids and I do share things, but it is on a different level." He
still struggles with profound lethargy at times. "It must be what it is
like to be clinically depressed (maybe we are, I understand a temporary
depression is not uncommon after the death of a loved one)."
     It is, indeed, common enough to be addressed in all books and articles
regarding grieving. "Sadness and depression ... certainly are
understandable--someone you love has died. The death has changed your life.
Old activities are different now. You may grieve not only the death ... but
all the other losses of routine, companionship and activity," writes Ken
Doka. *bled It is important to acknowledge that the coldness and grayness
of winter, which hamper activity, can compound depression, especially if
someone suffers from seasonal affective disorder (Sad). In the winter of
1998, Jan is doing everything the experts suggest--expecting and not
fighting periods of sadness, planning respite and diversion, finding
support through friends.
     The death of a loved one tops the stress scale. Now Jan is coping not
only with grief but with the travails of becoming a single parent for two
adolescents. On Halloween night, 1997, around 7:00 P.m., Jan relates some
frantic moments. "I am finally home. After rushing from work, getting
Lindsay to ballet, going back home, getting Ellery and taking him to a
distant friend to spend the night, stopping at the grocery to get
last-minute candy and the liquor store to treat myself to a bottle of an
Islay single malt, ordering gyros, getting Lindsay, picking up gyros,
rushing home, feeding the dogs while Lindsay got her costume on (a real,
genuine, hippie, complete with head scarf, tie-dye shirt, and about a
thousand necklaces, rings, and bracelets), taking Lindsay to her party (and
sleep-over), then back home just in time to dump the candy in a big bowl,
shut the dogs in Ellery's room, turn on the front-hall light, put on a CD
with cheesy Halloween sounds, and greet the first customer. In short, a
rather typical day. So I decided to sit and type a bit while I listen to a
plethora of creaks, groans, screams, and organ music oozing from the
stereo, occasionally jumping up for the door or fortifying myself with a
sip of scotch, as the moment dictates."
     Soon comes another crush of holidays, Thanksgiving and Christmas. A
half year after Anna died, Jan observes a low-key Christmas, in the past a
time of much decorating and feasting. "Ro came and I think that helped
with the kids, but it would have been okay with just us three." They are
helped by the knowledge that they would leave the next day for Florida and
its magic diversions.
     The first days of 1998 are spent with Anna's father, who displays but
a glimmer of zestier days. When he takes the family and a friend to dinner,
he refuses offers to pay, insisting on picking up the check. "I'm spending
my children's inheritance," he jokes. Now close to eighty-three, Stephen
Megregian remains sharply attuned, but his body is no match for his brain.
He made jokes about his "pharmacy"--the card table in his bedroom--but the
stories of his aches and pains now overshadow the jokes. He is pale and
quieter; Anna's father has been dealt a hard blow by Anna's death, but he
rejects the idea that this sorrow contributes to his excruciating,
intractable pain, although grief experts note that existing illnesses can
be heightened and that there is a real chance of contracting a serious
illness within the first year after a significant loss. Stephen rails at
the crippling pain that halts his busy activities, always a source of
strength in the past that kept him from sinking into depressing reflection.
He cries the instant he starts talking about Anna. "I try to keep my daily
thoughts away from past events like that. My wife passed away five years
ago, Anna passed away six months ago, and just last week, my best golf
buddy passed away. They're gone, I can't do anything about it."
     Fearful worries do intrude, however, regarding a possible secondary
loss. "What am I going to do with these kids? Now that Anna's gone, are
     they going to come down and see me as much as they did? How long?
They're growing up fast." He is assured that Jan and the children love him.
"I would just love to have them come down and take the place over and do
anything they want," he says wistfully. "It's so much fun to watch them."
The father is so much like the daughter--Stephen is determined to keep the
conversation light. "I keep reminding them that they've got to come down
here and check up on their inheritance."
     His sense of humor is vital. "I'm hanging on to that as long as I can
because if you start getting grumpy, it would be easier to go out and buy a
gun and shoot yourself." Still, the fanciful suggestion that his wife and
daughter may be having fun together somewhere right now elicits a sad
response. "Well, I hope they're not watching me, because I'm not having any
fun. Not anymore."
     The next morning, however, Stephen is up at dawn, before his
grandchildren, prepared to take them to his country-club golf pro for
lessons. Lindsay and Ellery attack golf with enthusiasm, especially Ellery,
who hits the ball 200 yards. "He smacked the heck out of it," says Jan. "He
loves it." Lindsay has ballet for physical release of her emotions, now
Ellery has found the same satisfaction in golf. In addition, says his now
more sensitive father, "it's another good thing he can do."
     The children have great fun in Florida. They joke and laugh in their
grandfather's bedroom, watching Beavis and Butt-Head, not an acquired taste
for the adults who watch football in the den. Two gold chains, one delicate
and the other masculine, always worn by Anna, now encircle her children's
necks. After their father gave them to Lindsay and Ellery, they have never
removed the chains. On Lindsay's is a miniature figurine of mother and
child, given to her by Jane Bittner, Ann Wylie, Patty Williams, and Nancy
Wiltz on Lindsay's twelfth birthday in October. She seems to be emerging
with new self-confidence, talking easily and warmly, with facial
expressions and movements uncannily like her mother's. Like so many
adolescents, she now wears dramatic nail polish--today it is dark blue, the
color her mother had despised. Ellery has a girlfriend, "well, sort of."
They convey no deep thoughts, but at times they can easily mention fun
moments they had with their mother.
     Back in Olney, however, the three hit bottom once again. "We were all
miserable," says Jan, as he tries to "wipe the slate clean" with New Year's
     action--making some order out of Anna's medical files and getting the
children to discard old clothes and toys. Plummeting grades inspire Jan
to contact Dottie Ward-Wimmer, whose helpful insights had been missing
during the past overloaded months. She suggests that Ellery and Lindsay
might benefit from a teenage support group at St. Francis but gave them the
choice to do that, see her separately, or to do nothing.
     A month later, after a few phone calls with Ward-Wimmer, no decision
is made to see her, but the children visit her a couple of times in the
spring. Jan wisely lightens up on bad grades, an absolutely expected form
of grief; children often do not express grief in traditional ways but in
such indirect ways of acting out. "I tried to emphasize that I am not going
to talk about what happened before Christmas in terms of grades. I know
some are going to be crappy. I keep telling myself I have to look at the
big picture. Some bad grades don't make a lifetime. Ellery's too bright
to mess up his life; he feels bad about it himself. I know lots of parents
with kids who are grown. They've gone to the best private schools, the best
universities, gotten great grades all along, and now have very ordinary
jobs. It doesn't always compute."
     By February's end, a small corner seems to have been turned. Ellery
comes back ecstatic from a week's school trip in Florida--he had even
finished most of his math work before he left. Jan watches as Lindsay and
Ellery happily reunite; he is able to feel elation, a numbed emotion these
past months, at such a happy family moment.
     As the months go by in 1998, Jan feels his way along the uneven path
of single parent child rearing, dealing always with the overlay of his
grief and his children's, which are mostly unspoken. "Sometimes I feel that
I'm never going to catch up with anything," says the harried father, "never
get a breather." Although Anna so often had voiced concern that Jan might
not be up to the task, Jan says, rightfully, "I think she would be proud of
me." The man who had difficulty expressing emotions and lacked the patience
to understand the nuances of his children's actions, now expresses his
feelings with his children, cries openly as Lindsay hugs him and pats him
reassuringly, and encourages them to talk to him about anything. Still, his
worries are numerous.
     "I worry about a lack of insight when it comes to making decisions
     concerning Ellery and Lindsay. Anna just seemed to know the right
thing to do--what parties were okay to go to, what friends were okay, what
clothes or jewelry were age appropriate. We didn't always agree, but her
choices always had a certain logic. She had a sixth sense about
interpersonal relationships. The kids are plunging headlong
into adolescence, and I have been taken by surprise with this rapid
transition. I worry about striking the right balance between too little
freedom and too little supervision. I worry that I'll be restrictive in an
arbitrary way and that I'm too negative with them; too many no's and
don't's. Anna and her mother, especially, had a great knack of making a
criticism without ever using a negative word. It's something I have to work
on."
     Jan remarks about the manner in which roles get played out when there
are two parents. The task of listening nurturer naturally fell to Anna, the
mother. Now he takes a page from her book and is able to show his own
imperfections. One night he sat down for an open discussion with his
children as to how they could all do better. Taking the initiative, Jan
allowed as how he was at times "more critical than I should be." As they
grinned and nodded, he noted that his plan had worked. "I offered that
first, so they could agree." It sounds as if Jan is setting impossibly high
standards for himself during a time when testiness and anger on his part is
to be expected. One axiom while experiencing grief is to be kind
to yourself. Yet Jan admonishes himself when he behaves in a manner that
seems reasonable, given the pressures and his own grieving. "The kids, true
to their ages, had made a huge mess and just left it, assuming some
benevolent genie would clean up. I remember on one occasion pleading with
them through tears, "You guys just can't do this to me right now!""
     He notes that their adjustments are compounded by witnessing years of
illness. The last three of Anna's life, filled with cataclysmic ups and
downs, "were more than a quarter of Lindsay's lifetime." Does he think
there is a sense of relief, which sometimes can turn to guilt among
survivors? "It's hard to know. It seems to come out more in depression with
Ellery. Lindsay seems pretty normal, then lets it out when she has to."
     Jan does worry about the long-term effects of Anna's illness and death
on the children. "I got a Christmas card from a very old friend of the
family whose husband was killed in a car accident about thirty years ago,
when her four children were from six to twelve years old. She enclosed a
note saying the one serious mistake she made was not talking about her
husband's death with her kids, trying to be strong for them. Consequently,
there was some delayed grieving and depression with difficulties later in
life. I will have to depend on instinct and Dottie's advice and ongoing
evaluations of the kids for help. I know we all will be affected by Anna's
death always, but I hope the effects do not impair our ability to enjoy
life in the future."
     Dottie Ward-Wimmer has comforting words for Jan. Although generations
ago, dying used to be a normal part of family life, the prospect now raises
questions among concerned parents, like Jan, as to whether witnessing death
can scar their children later. "The answer depends on the attitude of the
adults in the home. If the caregivers are uncomfortable with it, if all the
children see is the wasting and can't get past that, that's different. If a
person chooses to die at home and has to do it without support and adequate
pain control, it would be very traumatic for children. But in a home where
there is love and acceptance--"sure this is difficult, but I also have all
of my hours with you now. This is part of our life together"--and children
are allowed to come and go as they wish, it doesn't hurt them at all.
     "Yes, it's hard to go through, but in the years down the road, think
of the comfort that kids exposed to this can have. There was not a thing
that could have been done for their mother that was left undone. Anna was
never left alone, never with strangers. They didn't have to worry if a
nurse would give her medicine on time. They never had to be in some strange
place."
     The extraordinary care that Anna's children witnessed "is a beautiful
lesson--"look at how wasted, look how difficult, and yet Daddy didn't turn
his back. He'll never turn his back on me either. Boy, this is what love is
about, this is what commitment is about." It's a very, very tough time, but
it's a part of life."
     During Anna's remission in 1996, at a remove from the immediacy of her
own death, Anna elaborated on her thoughts about the unavoidable in
anyone's life--funerals, death, mourning, deep grieving. "Let's face it, we
cannot escape death. Many of my friends are now suffering family loss, and
I am seeing in them a new awakening," said Anna, "a new realization that
money, power, fame can't make death go away, can't take away hurt, can't
help." She wrote, "Time, one's own attitude about living and loved ones,
will make the harsh reality of grief and anger soften slowly into fond
remembrance and learned truths about oneself, I think. It has for me." Anna
learned that not facing life's realities "will prevent your life from being
fruitful. I have a relative who is still fighting the battles of her
long-dead spouse; she dwells on bad memories and they eat her alive. I wish
she could get help because she is living in the past and the past is over!
It will be up to Jan whether or not he chooses to be lonely. As I
constantly tell him, I hope that he finds a woman to provide love and
companionship for the rest of his life. I don't want him to pine away. What
we had can never be replaced; I know that and am comforted by it."
     Jan considers her point. Nine months after her death, he says, "While
I worry about being alone, I also worry about not being alone--that is,
considering the possibility of dating and remarrying. The whole idea scares
the hell out of me right now. I can understand, being so vulnerable, how
one could reach out for adult companionship and it could be a terrible
mistake. One cannot predict when new connections will be made, but I'm
steering clear of that now.
     "When you have been with someone constantly since the age of sixteen,
all your major decisions about lifestyle, philosophy, child rearing, and so
forth evolve in tandem. When we married, we had very few preconceived
notions about married life, so we didn't have a lot of disagreements. I
have heard horror stories about couples meeting later in life, when they
are very set in their ways. Huge fights ensue over something as trivial as
which shelf the dishes get stored on. After being with Anna for almost
two-thirds of my life, we knew each other completely and decisions were
made often through wordless communication. I don't know how accommodating
I'm willing to be."
     For now, Jan cherishes his time with his children. "I worry about
being alone as I see that Ellery and Lindsay will be off to college in four
and five years, respectively. I miss them terribly when they are away. I
wonder whether they will live nearby, whether they will visit often. They
are already following their natural instincts as they get older and
preferring to spend time with friends."
     And says Jan, "I worry about going through life but not living life.
Anna was often the prime mover when major changes in direction needed to be
made. I have to make sure that we move ahead when the time comes. If there
is one lesson Anna taught everyone, it's that life is to be lived."
     Above all, Jan is sustained and guided by what he prefers to call
symbolic rather than religious expressions of Anna's spirit. "Clearly, her
spirit lives on in many of us. For me, symbolism took on much more
importance during her illness and after her death. I found myself putting
extra effort into keeping all the plants alive that Anna received during
her first bout with cancer in 1989. I felt subconsciously that keeping them
alive was helping Anna stay alive.
     "We saw a lot of unusual natural phenomena during this past year, both
before and after Anna's death. In the spring, it was Hale-Bopp, which we
watched whenever possible. I remember waking Anna up before five A.m. one
morning, so she could see it in the east before sunrise. She was thrilled
by her first view in a completely childlike way. I remember the beautiful
day that emerged from gray dreariness just after Anna died. I remember
walking in shallow ocean water with the kids in July and finding ourselves
surrounded by scores of rays, gracefully floating by. I remember the kids
and I playing in the canal behind Steve's house for two hours with a pair
of manatees. I remember arriving for our first evening at the beach in late
July and being greeted by a full moon. I remember hearing about a meteor
shower on the late news in August, when the kids were in Seattle, and going
out and lying on the deck at midnight, watching the meteors streak by, just
as Anna and I had done years before."
     Jan, the scientist, suspends his insistence on relying on that which
can be proved. "It is," he writes, "a harmless comfort to think that we
were seeing Anna's influence in all of these wondrous moments."
     Indeed, Anna's perceptive thoughts continue to echo. Her certainty
that someday there would be a cure for cancer, as she sought to relieve
Lindsay's fears, became partially true a year after her death. It involved
the very drug that stopped working for Anna after nearly five years.
For the first time in history, there is now a chance that cancer can be
pre-
     vented in healthy but high-risk women. A 1998 landmark study found
that the use of tamoxifen in such women, who have no cancer but a family
history of cancer or precancerous lesions, reduces the rate of expected
breast cancers by 45 percent. *5 At the time of publication, more hope for
preventing cancer had surfaced. By the time Lindsay becomes a young adult,
hopefully major advances will have been discovered.
     As the first year since Anna's death nears its close, Jan indicates
that the old clich`e, time heals, was true for him. "The days of
overwhelming despondence are fewer and farther apart. I am beginning
to heal a little and am realizing how much of a toll Anna's illness and
death have taken. After Anna died, I felt in poor health for the first time
in my life. I see the physical healing (losing some weight, getting
exercise) as an essential parallel to the emotional healing. Spring has
certainly provided an emotional and symbolic lift." Jan now shares his
garden with a couple, and he basks in the "wonderful afternoons, digging in
the earth, enjoying the sun on our backs."
     Some joys of life are returning. "I am noticing the world around me
more and paying attention to it, feeling more like entertaining and
mingling with friends. I find myself thinking more about what meaning I
choose to attach to life and what I want for my future. The happy visions
of Anna jumping up and down with enthusiasm while saying "Yea, man, let's
do it!" in response to some new plan or idea--and then actually just doing
it--give me confidence while reminding me that life is short. Gee, so what
wild things have I done yet? Not much. I did agree to let Ellery have a
co-ed party. Oh, well, you have to start somewhere."
     Jan has not sorted his life out enough to make "any big lifestyle
changes." His single parent duties make it difficult to "find large chunks
of time to sit and think. I need to figure out how to spend more time on
fun things and less on work." An unresolved situation is "how to keep the
kids on the right track. Because they are getting older, the idea of them
being after school alone is more worrisome." He resolves to plan for some
after-school supervision. "I see so many kids drifting into trouble, not
consciously, but by slipping into bad habits in imperceptibly small
increments. I don't worry about them drifting away, however. We are still
very close and will always be."
     In April, Jan attended a birthday party for Anna's buddy, Linda
Suarez, herself a study in courage. So certain that her cancer was gone at
the time of Anna's death, Suarez was hit with uterine cancer a few months
later. Now she was preparing to enter Johns Hopkins for a bone marrow
transplant. Jan brought her a picture of Anna to take with her. Suarez
said, "Anna always goes everywhere with me."
     Then she turned to another matter. "I'm going to fix you up with a
date, Jan. I'm giving you a year, and then I'm going to get your butt in
gear!" In the hospital, following the success of the major stage of her
transplant, Suarez was as cheerful as ever. "It hasn't been bad at all."
She has a woman all picked out, she told Jan. "You know Anna wouldn't want
you to drop out of life." With a laugh Jan recalled, "I just let that one
slide by. Things are not settled enough to think about it." He feels that
way about all major decisions--contemplating a new job, a new home, a new
car, possibly relocating.
     Says Jan, "While the coming of spring has been uplifting, it is also a
reminder that this time last year Anna was going downhill rapidly. I'll be
admiring a daffodil or the flowering crab-apple tree and suddenly be
reminded of Anna's suffering, so incongruous amidst such a riotous flourish
of new life.
     "Well, that's the news from Lake Woebegon."
     June 4, 1998, the first anniversary of Anna's death, was not
especially observed by Jan. It was too rainy for a trip to Sugarloaf
Mountain, the children were busy with end-of-school functions, and Jan was
inundated by a work project that he was racing to finish. Still, the day
did not go unnoticed. "We're conditioned to pay attention to anniversaries
of all kinds. I think there was a symbolic shift. Not that all of a sudden
you change the way you feel. But you do stop and look back a year and say,
"I managed to get through this." Now it's time to move ahead."
     Jan realizes that many of the goals he had set up "were goals to fill
up the time and now I can see that the fact I didn't get them done doesn't
really matter." Now his time is genuinely swallowed by the "condition of my
life. You talk to any single parent with two teenage kids and they'll tell
you they haven't time for themselves. Even a couple with teenage kids!"
Hiring a person to clean house once a week has lessened the stress.
     The children seem happy with their friends and their lives. (dottie
Ward-Wimmer commented recently that the children's adjustment demonstrated
that they were "a great example of having done much of their grief work"
during Anna's illness.) Lindsay is off to summer ballet schools; Ellery is
now fourteen years old and five foot ten, has just graduated from the
eighth grade, and is already planning parties for the summer. As the trio
leave for a one-week vacation at some North Carolina beaches, Jan enthuses
about much --"a fabulous African wedding I went to and that fabulous movie
I saw, The Truman Show. It said so much on so many levels."
     He is not dating anyone and contemplates staying in Olney for now. The
one family member facing the biggest change is Anna's father. His son,
Steve, took a job with a college in Houston, thus forcing the reality that
the father must move into a condo. "He actually seems quite chipper about
it," says Jan. "It's closer to the country club and Marty's home." Marty is
the last of the siblings in Florida.
     Anna is not forgotten by anyone. A few days after the anniversary of
her death, a dedication of commemorative plaques took place at St. Francis.
Thanks to friends and family, a plaque in memory to Anna Johannessen is now
placed outside Anna's favorite door, the office of Dottie Ward-Wimmer.
     Jan finds moments when he communes with Anna. "When things get
difficult, I sometimes say, "Anna, you gotta help me out." I draw strength
thinking about what she would have done--or would have told me to do."
     And Anna's is the first face he sees in the morning and the last he
sees at night. He always takes a look at that happy, clowning picture on
the bedroom wall of two happy people in their early twenties--Jan and Anna
on their wedding day.
     CHAPTER TWENTY-ONE
     Lessons and Reflections
     It is more than one year since Anna died and yet she remains vividly
in the present tense for me. I miss her terribly. I still expect an
enthusiastic E-mail filled with exclamation points or a letter with her
silly version of a happy face beside her signature or an upbeat message on
my phone. I replay our hours of tapes, watch the video of her distinctive,
gutsy last appearance, three weeks before her death, when she talked about
living, really living until the very end. I reread her letters and know
that, in some way, she is with me. I feel right now that she is looking
over my shoulder and giving me guidance and enthusiastic encouragement but
also teasingly saying, "Now be sure to get this right!!"
     I have felt heavy sadness because I will never physically see her
again; this overlaps with smiling moments as I think about all that she
was, what she would be saying about today's events. Remembering Anna is an
enforced constancy as I write in a rush to deadline. Friends have said,
"This must be very difficult for you." At times, yes; however, I am
sustained by the knowledge that I am doing what Anna so wanted.
     Any chronicler lives in a voyeur's world; there seems to be an
affliction of the brain, if not the soul. We live outside as well as inside
the moment. Even the deepest events in one's life are transposed
into mental, if not physical, notes in order to remember every detail. One
protective flak jacket is to detach oneself from one's subjects. After a
few weeks of knowing Anna, this was impossible. She became a beloved
friend. I became much too involved for the distancing that journalists
prize--not unlike the medical profession. Certain, for example, that I had
     taken precise notes, I would find vague scribblings. When she was in
remission, I was joyous; to hell with the book. When the cancer resurfaced,
I worried and prayed as her vision blurred.
     She wrote me after that Christmas: "It is over and it was too much for
me, really. ... Many thanks for Christmas goodies. ... We are on the red
ball hunt. I still can't believe they were sold out. We are seeing Dottie
this weekend, since I have gotten so much worse with this head business. It
will be good for the kids. Aha, we are now on the Internet--way cool! Much
love and we can get together soon to chill out! That is my prescription for
after holidays!"
     At our next meeting, I dissolved in tears, then wrote: "That was
selfish of me, because it certainly does you no good to have me sobbing all
over the place. Your fabulous ebullience in the face of this crap is part
of what makes you so wonderful to all who know you. It is so touching that,
in the midst of all this, you were trying to find a red ball for me! ..." I
feel a lump in my throat now, remembering how she had searched for a giant
exercise ball to help my painful muscle condition. My awe was compounded,
knowing that I was but a small part of her universe treated so lovingly
despite her pain.
     Denying the depth of her illness, as a friend, was in contrast to what
I saw, as a reporter. When Anna mentioned having had radiation for cancer
in her spine, for example, I was shocked. I had completely forgotten it and
had sloughed off "cancer in the vertebrae" as if it had nothing to do with
her spine. Then one precious moment just hours before Anna died, I stood
alone by her bed and could deny no longer. She looked peaceful, as if she
was between worlds. I did not cry, this time. I was glad for her and,
for the first time, became convinced that the Anna I knew was no longer in
that frail, inanimate body. I knew in that instant if anyone I loved came
to such a point in life, and I had some choice in the matter, I would not
hesitate to help end that suffering.
     One day, I confided to a wonderful former hospice nurse, now a
bereavement therapist in private practice, Pat Murphy, how involved I had
become with Anna. She looked at me as if to say, "So what else is new?"
Then she said, "I would worry about you if you didn't." And therein is the
nutshell of the caregiving hospice and counseling movement. Unlike other
medical professionals, they assume that one's feel-
     ings will and must come into play. The best give of themselves, over
and over. At that moment, Pat was grieving herself, for a client, a young
mother who had just died. In grief, "everyone is struggling to get back to
"normal," and that's impossible, because "normal" includes that person,"
she says. "You have to redefine normal and that takes a long time."
     I have been asked what it felt like to enter such an intimate world of
dying and grief and how I handled the relationship with Anna and her
family. At times, the paradoxes were painful. During her illness, I was
comforted that Anna was a willing partner; she so wanted to leave something
of herself, to last after she had died. The book was a catharsis. Once, we
talked late into the night in a shared hotel room. Her curiosity about
dying was vivid. She wanted me to be with her, listening to her describe
her final moments. "Wouldn't that be exciting? To learn about it, up to the
last, and have it all written down?"
     As it so sadly happened, Anna lost her capacity to express. In those
final weeks, it was vital for me to take a backseat in order that Anna's
legion of friends and family could have their private and caregiving time
with her. Despite their all-consuming devotion to Anna, Jan and Roseann
nevertheless graciously recognized the need for my fly-on-the-wall
presence, in order to vividly retell Anna's story. But I, too, was
grieving. Anna and I had had an intense relationship of twenty months--a
speck in time compared to others--yet we deeply shared daily confidences
and caring. As Anna once wrote in a letter, "Just writing a book is not the
impetus for a person to drive forty miles plus round-trip [repeatedly]
to take a person to a fifteen-minute doctor's appointment. Actually, when
you really stop and think about it, it's downright insane! Myra, thanks for
being nuts!" Nearing the end, I wanted to stop being the reporter and, as
much as everyone in the room, bathe her forehead, spoon her morphine, tell
her I love her by being helpful in the here and now. And so I felt helpless
as I struggled with the conflicts.
     As I later wrote to Jan, "When I started this project, I had hoped I
would find someone with whom I would have a close rapport. Never did I
think I would fall in love--with Anna, you, Lindsay, Ellery, and your
friends and family. I know at times it has been difficult; times when I
wanted to put away the tape recorder and just embrace the warmth and love
that I witnessed, times when you all wanted me to just disap-
     pear, yet I have always known that we are united in trying to produce
the best possible remembrance of Anna and the things she wanted to tell
those who were never fortunate enough to know her. I thank all of you for
letting me into your life so generously."
     As I gaze back, I feel there are important issues upon which
to reflect-- religion and spirituality, hospice and dying at home,
caregiving and an afterlife, mourning and the lessons we have learned from
Anna.
     I will tackle first that which is hardest for me. Religion. So much of
what we believe is set in childhood. As in Anna's and Jan's home, religion
was not followed or taught in mine. While I envy the serenity my husband
and other family members and friends obtain through the Bible and other
religious reading, attending synagogues or churches, I have yet to find
such solace. According to polls, there are many who feel as I do. I have a
sense of spirituality--more so since I have witnessed Anna's dying--but I
have not found an organized religion I can embrace.
     For those who do, the comfort provided during times of sorrow is
immeasurable. My Catholic son-in-law, Joe Drape, says, "It's never too late
to try." A writer, Joe can be sardonic and cynical about much in life, but
his religious faith is rock solid. He suffered a grievous loss when his
parents died, but, he says, "My thirty-six years of my faith prepared me
for those moments. A lot of it is thoroughly irrational if you break it
down--Christ rose from the dead, we eat his body and drink his blood--but
there is a deep sense that someone who dies is gone but not out of your
life and that you're going to be unified again. To me it would be
unfathomable to think that this is all there is. There is a celebratory
feeling in my faith, that someone has gone to a better world. Believing
means accepting that some matters are out of your control."
     And perhaps that is what it is all about. The journey of discovery,
finally, comes down to this: knowing that there are no easy answers--and
often no answers--to much that is mysterious and mesmerizing about our
living, our dying, and a possible afterlife.
     Organized religion, as we have seen, was not for Anna or Jan. Both
derided what they viewed as hollow sentiments. "We had no time for the
hypocritical self-righteousness and xenophobia of fundamentalists of any
ilk," remarks Jan. The couple had a "healthy disregard for tradi-
     nal rituals." They wrote their own wedding vows and discarded a
traditional funeral.
     Yet Anna was not troubled, as I and, I suspect, many others are,
by doubt or a longing for religious sustenance. She was among the most
spiritual, living her life with a caring honesty and personal values that
many a churchgoer could emulate. Her acts of generosity were unknown
to many who call themselves religious. Anna did not pray, but she was a
walking answer to many people's prayers. Which begs one of those monumental
questions, What is religion, anyway?
     "We are certainly not antireligious," says Jan. "We count among our
closest friends people who have deep religious convictions, and we respect
each other's freedom to choose what is right for them." Indeed, most of
Anna's caregivers are religious and prayed openly for Anna. "Anna and I
were very comfortable finding ourselves in the miracle of life, accepting
that as a gift," says Jane Bittner.
     One study indicates that a vast majority in the United States, 96
percent, believe in God. More than half were concerned that they would not
be forgiven, either by others or by God (56 percent), and 42 percent
worried "a great deal" that God would not forgive them. Such a punitive God
would never occur to Anna, who neither believed in hellfire and brimstone
tirades, nor the stringent ethos of not sinning in order to make it
to heaven. George Gallup, Jr.'s, critical conclusion was that "a lot of
spiritual needs are not being answered" and that clergy must be better
trained to help people deal with end-of-life matters. *1
     The perception that a religious malaise exists today--polls show that
60 percent of respondents feel it is a waning force in this country--is not
borne out by facts. The same numbers of Americans pray today, 90 percent,
as did in 1947. (in this poll, 5 percent prayed for something bad to happen
to someone else. Tsk, tsk.) As the millennium approaches, there seems to be
a resurgence in religion and a search for meaningful answers--both on how
to live well and how to die well. The difference is the form that this may
take. "A new breed of worshiper is looking beyond the religious institution
for a do-it-yourself solution," write the editors of the New York Times
Magazine. *2 Young Americans in this spirituality-seeking era of mobile
living, interfaith marriages, and lifestyle freedoms are finding paths
never imagined by parents. Baptists become
     Catholics, Pentecostal storefronts host Catholics, Jews practice
Buddhism, former Baptists worship in Muslim mosques. *3 Prayer has entered
the once strictly clinical world of medicine. Some mainstream doctors,
humbled by fruitless decades of trying to cure the most intractable
diseases, now resort to prayer, hypnosis, and stress management to help
patients as surely as any New Age or alternative medicine guru.
     No matter the modern permutations that religion may take, one strong
and true law remains the backbone of otherwise dissimilar religions.
Remarkably similar wording admonishes that one is not a true believer
unless one follows the Golden Rule to do unto others as you would have them
do unto you. It is the credo of Christianity, Judaism, Brahmanism,
Buddhism, Confucianism, Taoism, Zoroastrianism, and Islam. *bled Anna
epitomized the Golden Rule.
     One widely held belief is in a life hereafter, another cornerstone of
cultural and religious thinking throughout the world, throughout the ages.
Making meaning out of death, believing that there is more to come, is a
galvanizing hope for most, whether or not they follow organized religions.
Since no living being will ever know, accepting that there are unexplained
mysteries in one's passage from this world allows for full mental
exploration and, for many, ease of mind.
     "Anna believed there was something after life, but was not sure what,"
recalls Jan. "Perhaps pure energy." Anna's insistence that she would be
riding the comet Hale-Bopp was like a mantra. Just days before her death,
she had perfected that image in the videotaped panel discussion--"Hey, and
I'll be up front, I thought of it first," she said to audience laughter,
referring to the members of the California cult who had killed themselves
en masse, believing that was the way to reach the comet.
     "I have a deep faith," says Linda Suarez, Anna's cancer buddy. "We
talked about what would happen after we die; I know Anna thought that there
was more to life than just this." Suarez feels that "although Anna was very
accepting of death, she might have had it just a tad easier" if she could
have been sustained by prayer.
     But Anna found her own resources. She delved into philosophy and was
sustained by the words of others, such as Viktor Frankl, and quieting
thoughts compiled by Dame Cecily Saunders, the kindly British pioneer
of the modern hospice movement and its emphasis on pain-free
     care. In one book, Anna underlined paragraphs that dealt with what the
authors called stillpoints. "Stillpoints are a technique that allows you
to stay calm and feel safe in the midst of threat. ... A stillpoint is not
a sense of being in control of everything. It is a sense of confidence that
things are as predictable as possible and that they will work out as best
they can. ... A stillpoint is like an emotional companion. It is the oasis
in a desert. A stillpoint strengthens the spirit to deal with that which
may be beyond one's control." *5 Suggestions for reaching this stage
included self-hypnosis techniques of relaxation and positive imagery. Anna
was finding, through spiritual awareness, an acceptance of what she could
not control and a point of serenity others gain through prayer.
     The Gallup poll indicated a deep desire for loving companionship at
the end, one of the hallmarks of hospice. There was a need to have someone
with whom they could share their fears and concerns, to have someone pray
for them, not to be alone. Dr. William Lamers is an assured candidate
for the Guinness Book of World Records for having witnessed more deaths and
surviving grievers-- "in the thousands"--than any other doctor in the
United States. He founded the first hospices in the western states, taught
those who developed the first 250 hospices in the United States, and, "at a
time when no one told me that doctors don't make house calls, saw patients
every day for six months until they died. I remember hearing the past
president of the American Medical Association say that, "in looking over
fifty-five years as a physician, I've never actually seen a patient die."
And I thought, "Where in hell were you?"'"
     "Religion," says Lamers, "cuts both ways. I remember an old priest,
age ninety-eight. After years of preaching that there was a heaven, as he
was dying he winked his eye and said, "Now, we'll see!" But I've seen the
old Catholics, screaming as they're dying because they think they're going
to go to hell. I've seen Mormons who are beautifully relaxed, saying, "This
day I will be in paradise; I'm going to be reunited with my family." And
I've seen Native Americans say, "I'm going south for the winter," like the
geese--such a beautiful thought. We've had people who are lifetime
Protestants saying, "I want to see a rabbi." They want to see if they're
missing something. We've had people who are total agnostics and their
husbands or wives write us later, "Thank you for not pushing
     religion down my throat." One guy sent something into the
Congressional Record about the wonderful care we gave to agnostics. We've
seen them all. The gypsies, the whole bit. It's a wonderful education.
     "There is no such thing as a norm. Everyone is unique. The
circumstances in life, spirituality, psychology, family makeup--
everybody's different. But there are some commonalities in dying. Facing
death prods people to come to some sort of terms with what existence is
and with what death might imply for them and their survivors."
     Most people can recite the so-called five stages of dying--denial,
anger, bargaining, depression, acceptance. As easy as reciting the names
of the Seven Dwarfs, these stages are not that helpful as guidelines.
Thirty years ago, the pioneering work On Death and Dying, by Swiss-American
psychiatrist Dr. Elizabeth K@ubler-Ross, formulated these stages that
quickly became international gospel. While most death educators recognize
that her unresearched observations stimulated a lot of discussion and
"brought dying into the popular, public focus," as Dr. Lamers states, there
is broad agreement that dying people do not necessarily progress through
the five-stage dying sequence K@ubler-Ross proposed. "There is no single
right, proper, or correct way," says Lamers. In fact, some critics argue
that her stages are misleading. No evidence indicates patients respond in
such a manner and that the totality of one's life is neglected in favor of
these supposed stages, they say, which ignore the complexities of human
behavior and thinking. This point is illustrated by a cartoon showing five
disconcerted doctors surrounding a man in bed. "Dead? Impossible!" says one
doctor. "First there should be acceptance." *6
     "To speak about "denial," for example, makes it so hard and fast, when
in reality it is a much more complex phenomenon," says Ken Doka.
     Avery Weisman, in his classic refutation On Dying and Denying, argues
that such broadly formulated stages are meaningless; he illustrates
by dissecting "denial," which could mean: (1) I am not ill; (2) I am ill,
but it is not serious; (3) I am seriously ill, but not dying; (4) I am
dying, but death will not come for a long time ... and so forth. *7
"Acceptance" could mean anything from quiet serenity to surly resignation.
     Weisman also coined the term "middle knowledge"--which helped build
away from the concept that denial and acceptance are two separate
     things. Middle knowledge recognizes that people drift in and out of
attitudes concerning their mortality. This explains why Anna could talk
about living forever and could also see the end of her life simultaneously.
"The real question is not that one knows--but when, where, or with whom he
chooses to acknowledge it," says Doka. Rather than K@ubler-Ross stages, a
more accepted approach today is that there are a swirling range of
experiences to dying--feelings, attitudes, and emotions--that are ongoing,
ever changing, and revisited again and again and can be experienced
simultaneously. Ambivalence is among the most common. That is why Anna
could genuinely accept death but at the same time fight against its
untimeliness. As Jan remembers so well, there were thunderbolt moments of
terror during Anna's illness--the day they learned her cancer had returned,
the day they realized the terrible truth when they saw the large tumors and
were flatly told that metastasized breast cancer was incurable, the day
they knew that Anna was going to die much faster than thought. But those
moments were interspersed by months of numbed reality during which they
could face the cancer easier, if not accept it, and could discuss it almost
abstractly.
     "There is quite a difference between acceptance and resignation," says
Lamers. "I have seen, most beautifully, a kind of spirituality that arises
at the end, as people go through what I sense is a paradoxical shift," he
says. "They go from being anxious to suddenly having an overwhelming sense
of calm that comes from their recognizing that "this is the way it
happens.""
     The guiding message is to remember that this stage does not come
to everyone.
     So what is hospice, asked a seventy-five-year-old cancer survivor who
was on the panel with Anna in May of 1997. "Is it a place or what?" Hospice
is not a place but a philosophy, based on a humanism that requires hospice
workers to accept patients unconditionally. Sometimes, say, a lifelong
history of family dysfunction is difficult to tolerate. "Hospice caregivers
learn not only to tolerate but to respect individual differences in the
family. ... It is a core part of hospice philosophy that to approach the
human encounter with death is to face what is noblest in humanity. Even the
poorest in spirit can be transformed by the experi-
     e," writes Stephen R. Connor, clinical psychologist and former
executive director of the Hospice of Central Kentucky. *8 He is now vice
president of the National Hospice Organization.
     Some hospices have facilities and they do attend patients in nursing
homes, but the basic thrust is to teach the families how to care for the
dying in their homes. The best in the movement are unrelentingly
non-judgmental givers and teachers, both for patients and families, with an
emphasis on pain management and psychological preparation for death. A
little-known but major component is that hospice offers at least twelve
months of bereavement counseling for families following a death.
     Hospice, which began as hostels for the weary traveler, the poor, the
sick, and the dying in the Middle Ages, has become an astounding modern
movement in the United States in less than thirty years, growing from just
1 in 1971 to nearly 3,000 in 1998; hospices now serve almost half a million
dying patients annually. The hospice concept has grown worldwide. When Jack
Gordon, president of the Hospice Foundation of America, was interviewed on
Voice of America television in 1996, calls came in from Malawi and
Argentina and Romania, asking how to start hospices. In the United States,
a negative reaction to depersonalized high-tech care--no matter how
futile--spurred the movement. Hospice, of course, is not perfect and has
its pitfalls, but, despite complaints, I have yet to hear a family say they
would have preferred a hospital.
     As Anna said, knowledge is the greatest antidote to fear. Doubtful
before I experienced Anna's at-home dying and listened to countless
personal stories, I am now positive that hospice is what I would choose for
myself or loved ones. But this includes my strong warning to thoroughly
check out those available to you. Statistics on their efficacy are rare
because hospices functioned for years as ad hoc entities. Sometimes there
are administrative and coordinating snags, such as we saw in Anna's case.
As the patient load grows, hospice leaders acknowledge that some recruits
need better training on the hospice philosophy. "Effective hospice takes
time and requires the work of an experienced, supervised, and carefully
trained interdisciplinary team," says Lamers. "I will say, "I'll do a
physical exam. You sit in the kitchen with the wife and find out what's
going on here. Where are the kids, the parents, brothers, sisters, what
needs to be done, what are your plans and priorities?"'"
     Although many families reject nonnursing aspects, such as chaplains,
social workers, or volunteers, I would strongly suggest trying the full
hospice team initially and then discarding that which seems unnecessary. A
volunteer may be indispensable running errands, buying groceries, listening
to the patient while you take a breather. The social worker's role is far
different from the usual connotation of working with the poor or
dysfunctional. In hospice, they are there to expedite details on many
fronts--funeral homes, financial planning--and, above all, to help educate
families on what to expect as one goes through dying. Hospice team members
who ignore this crucial aspect should be reported immediately to the
supervisor. Doka stresses that sometimes "not nearly enough is done
to teach family members." As for chaplains--who are strictly
discretionary--their presence could be beneficial even for those with no
expressed faith. "It's got to be a really grounded person who has been
through a lot of deaths, a lot of experiences. It is nondenominational
help," Lamers stresses. "One wonderful hospice chaplain said that the
"chaplain's major role is that of spiritual broker." It's saying, "Do you
want to make contact with your church? If so, I'll arrange it." Or, "If you
want to talk about it, what can we do to foster that?"'" Sometimes this
means just listening to underlying spiritual doubts, needs, desires, or,
conversely, negative questions.
     Tales of hospice care can run the gamut. Some survivors say that
hospice nurses and aides came only a few hours a week. Others say that the
nurses and aides stressed that they could be called at any hour and duly
showed up when summoned. Reports vary even within the same hospice,
depending on the individual caregiver. One woman received no follow-up
bereavement calls from a Northern Virginia hospice center. She opened her
mail six months after her husband died to find herself on the hospice
mailing asking for donations-- which should go out only after one year of
grieving. A gay couple intensely disliked a coordinator from the same
hospice. "She was about as comfortable as going to Bloomie's customer
service," says Don Wilder Plett. "She treated Alan like a tomato--"if he
won't be able to understand me, you'll have to fill this out ..." and spoke
to me as if I was a nanny from another country. I told her, "He's in pain.
I want to have him hooked up tomorrow [for a morphine drip]." We got rid of
hospice and called home care service.
     Their nurse was kind and loving and treated Alan like a recovering
person, not a terminal victim. It was psychological therapy for him. She
came to the memorial."
     There are others, like the much younger sister of an
eighty-four-year-old brother, Millie Cowan, who says, "We could not have
done it without hospice. He had an unbelievable bond with the nurse's aide,
who bathed him for six months. She could get him to do anything." And a
forty-year-old daughter, Tammy Haddad, who quit her high-powered job
to help her father for five months, says, "The hospice team treated the
whole family. The social worker still calls my mother to ask how she is
doing. We kept saying, "Who are these people? They must be angels." They
come into your house, they don't know you at all. They're able to perceive
your essence and help you to appreciate it and help you move to another
life in the most comforting way possible. Fear is the worst feeling
imaginable. There's no book, no doctor, no nurse; there's no one out there
that can make this situation better. They helped me realize that there was
no answer and that that wasn't necessarily a bad thing. This is just what
it is and what you need to accept."
     One major block to the hospice goal of making death a process of
growth and completion of life is psychological--the denial of death and the
unwillingness to stop aggressive care. Hence half of all patients are in
hospice care for no more than a month. Government regulations feed such
attitudes. When Medicare began reimbursing hospice in 1983, this was
considered a great boon and it did indeed help hospice expand and reach
larger numbers of patients. (since then, for-profit hospices have burgeoned
and have been criticized for such practices as providing commissions
to staff members for signing up doctors who refer patients.) *9 A pitfall
is the arbitrary six-month limitation set by Congress on Medicare funding.
"Hospice people at the time thought that a year was more reasonable, but
that was the legislative compromise," says Gordon. "When people have an
incurable disease and you're trying to keep them alive and functioning as
long as possible, that's the wrong kind of limit." Sometimes families
resort to subterfuge. Cowan's brother was never told he was in hospice
care. Haddad's hospice nurse was also a chemotherapy expert and home health
care nurse; she treated him at home while he was on chemo and later as a
hospice nurse. Others find religious care-
     giving organizations that act as hospices, without the restraint of
"palliative care only" rules.
     In this cost-cutting medical era, hospices additionally find
themselves embroiled in catch-22 bureaucracy. "Government auditors have
questioned hospices about a small percentage [one half of 1 percent] of
their patients who live longer than six months," says Gordon. "Doesn't it
seem crazy that the government is telling us that we're helping people live
too long? The kind of care that they get probably extends their life, so
hospices are being penalized for success. It also points up that an
arbitrary six months is difficult to predict." Instead of cutting back,
says Gordon, "the kind of holistic care given to the terminally ill ought
to go to everybody."
     Health care in this country is organized to provide primarily
acute-care services, although the greatest need is for chronic care. Many
in the field seek to educate the public, legislators, and the medical
profession to recognize the value of hospice for more than the immediately
terminal. "Hospice could be extended to chronic diseases and severe
disabilities," says Gordon, "and could be extended to conditions that we
know are terminal but take a lot longer, like emphysema or Parkinson's or
Alzheimer's or Lou Gehrig's disease. The government and/or insurance
companies would have to make the benefit available on a
diagnosisstprognosis basis, with different levels of care at different
times." (since 80 percent of all hospital days are for chronic care, an
expanded hospice system-- proven less costly than hospitals--could cut
health costs.)
     The best proselytizers for hospice are surviving family members and
friends. Tammy Haddad's story embodies the experience of countless
survivors. "We were really skeptical early on because, first of all, when
you face hospice, you're facing death and there is the element of not
knowing what is going to happen that is so painful. It was hospice nurses,
not the hospital or doctor's nurses, who helped prepare my parents for each
step along the way. They alleviated much of the fear by saying, "In the
next week, you're going to be noticing this or feeling this," and so on.
Just reading this may sound like cold comfort, but it was the most
wonderful thing that you could give someone."
     The raw wounds of losing her father six months ago bring tears. A
successful businessman who had run lives, companies, and families, Haddad's
father, like many people, felt angrily out of control. "The
     nurses, aides, and social workers helped him regain control of even
the small things and helped him realize that letting go is part of it."
After his death, the social workers talked to Haddad and her mother about
"how at first he was such an angry man and then how he grew and how he
accepted it. They kept telling him something which is so true, and that is
"You could have had a heart attack and died; instead you have this whole
period to say good-bye to your family and reflect about all that you've
accomplished--not in work but with your family and all the loved ones now
around you."" Because of them, her father positively reordered his waning
days. "He was so sweet, a pussycat," says Haddad, sobbing again.
     They emphasized that Haddad and her mother should take breaks.
"Someone telling you that it's okay to go, that you just can't go flat out
the whole time, made me realize that it was important to walk away and fall
apart so that you don't fall apart in front of the person dying.
     "I guess death is the ultimate equalizer," says Haddad. She has worked
among the powerful and famous as the executive producer and creator of both
the Larry King radio show and Larry King Live television show, a vice
president of CNN, and senior broadcast producer for the Today show. "Sure
these people can have big egos, can be arrogant--but some can be absolutely
terrific." Since her father's death, "my appreciation has grown for those
who care about their families, who care about you--it sounds so trite, but
it's true." There were surprises. Comedian Don Rickles, who was not close,
became kindly solicitous and shared his own experiences when he found out
Haddad's father was dying. A noted female columnist whose dying father was
in a coma for months became a new best friend, although Haddad had known
her only slightly before. "She was there for me every step of the way."
Haddad reflects that until one experiences it, "we just don't know how
to die, or to help those who die. Hospice helps. This has totally changed
my life. Part of that was the hospice people. They were there, helping us
to take stock and figure out our priorities. Their beliefs were so strong
that you just absorbed it in their presence. It made all the difference."
     When Haddad quit her job, she says, "I was frankly embarrassed
to publicly say, "I'm leaving. I'm going to spend time with my father."
You're competing in a man's business and it felt like it was a wussy girlie
thing to say.
     But as it turns out, I've gotten more calls and notes from people who
said, "Good for you, I didn't spend time with my dying parents. I didn't do
this or that." Or people who said, "You know what, this is the best thing
you've ever done. Call me if I can do anything to help." I have acquired
four or five really good friends because of this experience."
     Haddad now belongs to what can be the most caring group, those who
have been there. Her experience has sensitized her to give back--as others
did for her. "I'm more sensitive to other people's problems and am more
helpful to friends and family by talking about them. A lot of people go
through life not having that opportunity. You have to feel like you've
gained something from this and that maybe you can help others who are in
this situation." Haddad expresses a common sentiment of the newly bereaved.
"I'm much more conscious of the shortness of life--to appreciate what I
have and really how fragile it is."
     Although some people apply the K@ubler-Ross five-stage theory of dying
to grief, this is, again, not sufficient. Ambivalent, conflicting, and
simultaneous emotions are also part of grieving. Today there is growing
acceptance that some survivors never do end their grieving. If mourning
persisted after two years, it used to be considered unacceptable
complicated grief with other underlying causes. More compassion for
long-term grief exists today. Denise Scali, one widowed friend, more than
two years after the death of her husband, describes her grief as coming in
waves. So does Jan. It is a good metaphor; one goes along, safely treading
water, and then is flattened by an unexpected wave that swells suddenly and
slaps one in the face.
     One aspect of this book was to examine how all of us can help console
friends or loved ones. Ideas thread throughout this book, but they bear
reviewing, along with more suggestions. They can sound simple and obvious,
but putting them into practice takes thoughtful and conscious effort. St.
Francis Bereavement Center includes the following: Be there. "Grieving
people need support and presence much more than advice." Initiate and
anticipate. "Intensely grieving people often don't know or can't ask for
what they need. Suggest specific tasks and times you would like to help."
Anna's friend Jane Bittner, who has survived the death of her son, both
parents, and a brother, adds, "Do not wait to be asked. Just
     show up. I remember people saying to me, "If there is anything I can
do, please call." They meant it, but I think grieving people don't call."
     Every manual on grief emphasizes listening --that silence is
golden--and advise not to push or force conversation. Expect to listen
to the same details repeatedly; grieving people often need to tell their
stories over and over. One of the most important gifts you can give is not
to interrupt or relay your own stories.
     During my volunteer bereavement course at St. Francis Center, I
promptly flunked Not Talking 101. We have all heard ourselves flailing on,
so discomfited by silences, particularly in emotional moments, offering
anecdotes or rolling out platitudes. To really listen and absorb what
others are telling us, either verbally or through body language, is an
extraordinary gift. Some seem born with what a friend of mine, Pat
Altobello, calls the "nursing gene." I call it the "caregiving gene." And
then there are the rest of us. The excuses come. "Can't visit now," "I hate
hospitals," "I don't know what to do or say," "I'll wait until later. ..."
Does this tell us that we are more concerned about our own awkward
helplessness and unpleasant feelings? Perhaps. "But," says Grace Metz,
director of volunteer services at St. Francis, "sometimes we're so
concerned about causing pain or that we won't say it right that we don't
say anything. And that contributes to the sense of being invisible or
disenfranchised."
     Listening is a delicate balancing act. "Some people want to be asked
how they feel, and some people say "That's the last damn question I want,""
Metz says. An old man in a video said that asking him how he felt put the
burden on him. "Ask me something that involves you, that doesn't objectify
me," he said vehemently. He also wanted to be treated normally. "I really
appreciated someone ... saying "Oh dude, you got a nuclear haircut
(chemo-zapped baldness)."" For some very private people, who have their own
way of navigating, any conversation can be a definite invasion. Yet, as
caring strangers, volunteers can often free up the patient or mourner. A
gift for them can be telling their story to someone brand new, who has no
emotional frame of context.
     Caregiving may not seem natural, but one can learn. It is exhilarating
to know that we can help friends and family in many ways--from wiping a
warm forehead to sending notes to running errands to letting a
     dying or grieving friend talk if so desired. In the beginning, I
couldn't believe professional caregivers who told me how blessed and
rewarded they felt, how their own lives were so enriched by the humbling
experience of helping others in their most intimate moments. Now I know.
     Another gift we can provide is a safe haven, so that the bereaved can
open up if they feel like it. Opening a door can be a delicate, sometimes
thankless effort. Don't have expectations; they may chose not to walk
through it, now or ever. "I have said a number of times to Lindsay, "How
are you doing?"'" says Bittner. "And she will say"--imitating a chipper
response-- ""Oh! I'm fine!" So that was it. The door was opened, but she
didn't have to walk through." Comments about missing her mother are met
with one word, "yep," which brooks no discussion.
     If a friend chooses not to open up, it is important not only to accept
that, but to keep showing support on whatever level you can. Grieving
people need listening, but they also need friends who treat them as they
always have--inviting them to movies or parties or lunch, even if they
decline. Providing moments of laughter and diversion are wonderful ways
to help a bereaved friend regain energy and some perspective.
     Condolence letters can be of great help if they include the positive
way in which the deceased touched your life; many survivors savor such
remembrances and reread them over the years. One son who lost his father
says that such letters "remind me of all the things he had given me over
the years." And, remember, "consoling" clich`es should be curbed. Rabbi
Earl A. Grollman writes an imaginary inner dialogue to accompany some: ""I
know just how you feel." ("No, you don't! How can you possibly know what
I'm going through?"') "You are doing so well." ("How do you know how I feel
when you leave?"') "Your loved one lived to a ripe old age." ("At any age
death is a robber.") "Others have lived through it." ("At this moment I'm
concerned about myself.") "It's God's will." ("Then this vindictive and
vengeful God must be my enemy.") "You're so young. You have the rest of
your life ahead of you." ("Don't you know I'm hurting and I feel like I'll
hurt forever?"')" *10
     Finally, be kind to yourself. If what you do comes from the heart, any
mistake along the way will be forgiven by grieving friends, who realize the
depth of your caring.
     There are many books, articles, and organizations that the bereaved
can
     turn to for help. (some are listed at the back.) Perhaps your
community will be fortunate to have as caring a place as Washington's St.
Francis Center. Sometimes the most succinct guides offer practical help on
a variety of matters: what to expect upon returning to work, what to do
when friends withdraw, finding spiritual strength when you are not
religious, how numbness can be a temporary gift from the torrent of
emotions, dealing with the anniversary of the death. ("The issue after the
first year is not if we're feeling better, but if we're feeling better more
of the time. ... Recognize that this is a difficult time. Often when we
accept that fact, we do not feel as bad about feeling bad.") *11 I have
included information on how some excellent journals can be purchased
inexpensively.
     At the end of this long journey, I have learned to be more tolerant
of the beliefs and attitudes of others regarding dying, death, and
grieving; to recognize that some mysteries are not only unsolvable but
exciting to contemplate. I am willing to believe in the mystic moments of
others; it is the truth for them and therefore enough for me. I believe
that Anna conversed with her mother in her nearing-death awareness stage.
And when Jane Bittner tells me that her dead son came to her one day in
radiant light, I believe her. When Don Wilder Plett says that his greatest
healing occurred "when Alan came down to me; I could feel his presence," I
do not scoff. He was scattering Alan's ashes on Mount Rainier. Plett pulls
out snapshots. "See the sky change from clear to that wide swatch of cloud?
That could be in the shape of an angel wing if you use your imagination."
Jan, the scientist, was himself contemplating a mystic end. "I wondered
whether at the time of Anna's death there would be some indication of some
nonphysical part of Anna leaving her body. One reads numerous accounts of
people seeing what could be termed a soul leaving the body at the time of
death. I saw nothing and felt nothing other than Anna's life ending." He
adds that this has nothing to do with "Anna's spirit living on in many of
us. It clearly does."
     On a practical note, Anna's messages about constant vigilance
regarding doctors, tests, X rays, diagnoses, and so forth should be a
strong lesson to us all. Second and third opinions should be sought.
Roseann's suggestion that doctors' offices should provide up-to-the-minute
information regarding clinical trials or new drugs is a sound idea. It
would be
     a boon to patients if doctors were to hire case workers of sorts who
would not only handle such information but would be able to explain in
laymen's terms, step by step, in detail, what the doctor usually does not
have time, or the ability, to outline. Given today's cost-cutting medical
situation, such a person might have to be hired by a patient, but it would
be worth it; also there are some people who will, for a small fee, search
the Internet for detailed information on what one needs to know about
illnesses and diagnoses.
     I cannot imagine why people are unwilling to provide every available
piece of information for those who will survive them--up-to-date wills,
living wills, do-not-resuscitate papers, and the like should be done while
one is healthy, so as not to be a burden in case of sudden death. Anna's
All Sorts of Things You Should Do Before You Die list (on 'print' pages 244
to 246) is invaluable.
     As for humane end-of-life measures, it would be a boon if hospital bed
manufacturers were to make twin beds that can be attached together, so that
a loved one could stay in the same bed if so desired. After all, one can
purchase a motorized regular king-sized bed with individual mattresses and
up and down controls for either side. Anna's caregivers were told by the
hospice that guard rails were not available for the Johannessen's
king-sized bed. That also seems a simple enough product to design.
     It is absurd to think that Anna's wisdom and selflessness and
undaunted optimism would wash over me--but I was able to retain the spirit,
if not the totality, of her mind-set. Her gift of giving was so strong that
I never left Anna without being uplifted. I felt when my son, Michael, and
daughter, Leah, were born, creations of such magnitude, I would never sweat
the small stuff again. It didn't happen that way, then or now; deadlines
still stress me out, the driver who cuts me off still gets cursed, the pace
of life remains frenetic. But my journey has found me pondering more and
more what I can do to give back for the richness of my life.
     When I started this book, I thought that finding Anna was pure luck.
Now I think there is a much more profound reason, a higher power that
brought us together. For all the pain of loss, the joy of knowing Anna has
enriched my life far more. I am better able to accept death and dying and
     feel more sensitized to helping others. I think more generously about
people I meet, for one never knows what sorrows they are carrying quietly
inside them as they laugh and talk at work or at a social gathering.
     The finest tribute to Anna, or to anyone you know like Anna who came
to live out loud, would be to try to live as she did. This saying is a
reminder: "Alas for those who cannot sing, but die with all their music in
them. Let us treasure the time we have and resolve to use it well, counting
each moment precious--a chance to apprehend some truth, to experience some
beauty, to conquer some evil, to relieve some suffering, to love and be
loved, to achieve something of lasting worth."
     Resources
     Candlelighters Childhood Cancer Foundation 1901 Pennsylvania Avenue,
NW Suite 1001 Washington, DC 20006 (202) 659-5136
     Headquarters for local groups that provide
     education and support for parents. Centers for Disease Control AIDS
Information
     Hotline
     General Information about AIDS, directory of
     AIDS treatment and support organizations,
     advice and support for people with AIDS or
     HIV. Compassionate Friends P.o. Box 3696 Oak Brook, IL 60522-3696
(708) 990-0010
     Headquarters for local chapters that provide
     support and education for parents and siblings on
     childhood loss. Concern for Dying 250 West 57th Street New York, NY
10107 (212) 246-6962
     A clearinghouse for death-related information. They
     also provide copies of model durable power
     of attorney and living will forms. The Dougy Center P.o. Box 66461
Portland, OR 97286 (503) 775-5683
     Provides support for bereaved children. Foundation for Thanatology 630
West 168th Street New York, NY 10032
     An educational organization providing workshops
     and materials for professionals working with the dying
     and bereaved. Hospice Foundation of America 2001 S Street, NW Suite
300 Washington, DC 20009 (202) 638-5419
     Promotes education on death, dying, and
     bereavement through newsletters, audio and video
     resources, and an annual
     teleconference on "living with
     grief." Books that supplement the
     teleconference, edited by Kenneth J. Doka,
     include Living with Grief: Who We
     Are, How We Grieve (1998);
     Living with Grief: When Illness Is
     Prolonged (1997); Living with Grief:
     After Sudden Loss (1996); and Children
     Mourning, Mourning Children (1995), published
     by Hospice Foundation of America, Taylor
     and Francis. Journeys Bereavement Newsletter
     A monthly newsletter featuring well-known
     grief specialists who offer advice and
     insight to aid in bereavement. Available in both
     bulk and individual subscriptions. Contact
     Hospice Foundation of America for ordering
     information. (202) 638-5419. Make Today Count P.o. Box 222 Osage
Beach, MI 65065 (314) 346-6644
     A national program providing model
     educational programs for people coping with cancer and
     other life-threatening illnesses. National AIDS Hotline American
Social Health Association P.o. Box 13827 Research Triangle Park, NC 27709
1-800-342-AIDS
     A twenty-four-hour-a-day hotline with
     recorded information on AIDS and referral
     capability for medical care and testing. National Association for
Widowed People P.o. Box 3564 Springfield, IL 62708
     Promotes support groups and resources for
     widowed people. National Cancer Institute, Cancer Information
     Service
     Offers information about conventional and experimental
     cancer treatment, trials, and protocols and
     referral to specialized cancer centers.
     National Hospice Organization 1901 n Moore Street Suite 901 Arlington,
VA 22209
     A major organization for hospices
     in the United States. National Organization for Victim Assistance 717
D Street, NW Washington, DC 20004 (202) 232-8560
     An organization that advocates for the rights of
     victims of crime and disaster and provides
     services to local programs. Parents of Murdered Children 100 East
Eighth Street Room B41 Cincinnati, OH 45202
     A national organization that provides
     support and educational information for parents of
     murdered children. St. Francis Center 4880 MacArthur Boulevard NW
Washington, DC 20016 (202) 333-4880
     Provides support during illness, dying, and
     bereavement. Survivors of Suicide Suicide Prevention Center, Inc. 184
Salem Avenue Dayton, OH 45406
     A national organization providing services
     to suicidal people and their families. Widowed Persons Service
American Association of Retired Persons 601 E Street, NW Washington, DC
20049 (202) 434-2260
     Provides support groups and resources
     for the newly widowed.
     NOTES
     'note references are presented in the
     following order: print page number,
     reference indicator, braille line number.'
     20. How to Go On Living
     320 *1 l19 Dr. Stephen P. Hersh,
     Journeys: A Newsletter to Help in
     Bereavement, December 1994, p. 3.
     Published by Hospice Foundation of America,
     Washington, D.c. 323 *2 l9 Information for this section came from
     Journeys, December 1994. Articles
     were written by Hersh; Kenneth J. Doka,
     Ph.d.; Ellen Zinner; and Rabbi Earl
     A. Grollman. a323 *3 l25 Ibid. b326 *bled l3 Kenneth J. Doka,
     Ph.d., "Sadness and Depression,"
     Journeys, December 1996, p. 1. 334 *5 l16 Miami Herald,
     Monday, 6 April 1998, p. 1;
     New York Times, Tuesday, 7
     April 1998, p. 1. A concern
     that tamoxifen can cause an increase in uterine
     cancer--which is much easier to detect early and
     cure than breast cancer--was outweighed by the
     benefits in the study.
     21. Lessons and Reflections
     b341 *1 l8 New York Times, 6
     December 1997, Religion page,
     "Journal" column. b341 *2 l23 "God Decentralized,"
     New York Times Magazine, 7
     December 1997. Comments on page 55,
     statistics on page 60, with source notes
     on page 114. 342 *3 l7 April Witt, "Seeking
     Spiritual Renewal," Miami Herald,
     Sunday, 12 April 1998, p. 1. 342 *bled l23 As quoted in The Great
     Quotations, compiled by George Seldes
     (new York: Lyle Stuart Publishers,
     1960), p. 283. 343 *5 l20 Ronna Fay Jevne,
     Ph.d., and Alexander Levitan,
     M.d., No Time for
     Nonsense: Getting Well Against the Odds
     (san Diego, Calif.: LuraMedia,
     1989), p. 174. b344 *6 l8 Charles A. Corr,
     Donna M. Corr and Clyde M. Nabe,
     Death and Dying, Life and Living, 2nd
     ed. (pacific Grove, Calif.:
     Brooks/cole Publishing Company, a
     division of International Thompson Publishing
     Company, 1997), p. 154. b344 *7 l19 Ibid., p. 153. As
     described from Weisman's work: On Dying
     and Denying: A Psychiatric Study of
     Terminality (new York: Behavioral
     Publications, 1972). 346 *8 l7 Stephen R. Connor,
     Hospice: Practice, Pitfalls, and
     Promise (washington, D.c.: Taylor
     and Francis Publishers, 1998), p. 9. b348 *9 l9 Charles Babcock, The
     Washington Post, 14 June 1998, p.
     1. This look at hospice practices
     noted that a federal audit review of more than
     two thousand hospice patients who lived
     longer than the arbitrary six months
     concluded that nearly two-thirds were not terminally
     ill when they were enrolled. However, hospice
     organizations argue that the article failed
     to point out that, if this were true, it is a
     minuscule number of hospice patients--
     less than one half of 1 percent of the four
     hundred fifty thousand annual patients, the
     majority of whom receive humane, quality
     treatment that family survivors endorse. In
     fact, the sad statistic is that the majority of
     doctors and families resist hospice
     until the very last, hence half of hospice
     patients receive but one month care, far less
     than the six months set by the government.
     Vitas Healthcare Corp. of Miami, the
     largest chain of for-profit hospices, was questioned
     by the auditors. (no report was issued by the
     publication date.) It is a major
     supporter of the nonprofit Hospice Foundation
     of America, an educational organization that I
     mention often and favorably in this book; it is
     a separate entity, not connected to any
     hospice facility or organization. As I
     have mentioned in the body of the book, my
     husband, Jack D. Gordon, is
     the president of the Hospice Foundation of
     America. b353 *10 l22 Journeys: A
     Newsletter to Help in Bereavement, December
     1996, p. 2. Published by Hospice
     Foundation of America, Washington, D.c. 354 *11 l19 Ibid.
     Suggested Bibliography
     Attig, Thomas. How We Grieve:
     Relearning the World. New York: Oxford
     University Press, 1996. Berger, E. Roy, with Linda A. Mittiga.
     Common Bonds: Reflections of a Cancer
     Doctor. Westbury, N.y.: Health
     Education Literary Publisher, 1995. Blau, Sheldon P., and Elaine
Fantle
     Shimberg. How to Get Out of the Hospital
     Alive. New York: Macmillan,
     1997. Byock, Ira. Dying Well: The
     Prospect for Growth at the End of Life.
     New York: Riverhead Books, 1997. Callahan, Daniel. What Kind of
     Life: The Limits of Medical
     Progress. New York: Touchstone
     Books, 1990. Callanan, Maggie, and Patricia
     Kelley. Final Gifts: Understanding the
     Special Awareness, Needs, and
     Communications of the Dying. New York:
     Poseidon Press, 1992. Carter, Rosalynn, with Susan K.
     Golant. Helping Yourself Help Others:
     A Book for Caregivers. New York:
     Times Books, 1994. Connor, Stephen R. Hospice:
     Practice, Pitfalls, and Promise.
     Washington, D.c.: Taylor and
     Francis, 1998. Corr, Charles A., Donna M. Corr, and
     Clyde M. Nabe. Death and Dying,
     Life and Living, 2nd ed. Pacific
     Grove, Calif.: Brooks/cole
     Publishing Company, 1997. Davies, B., J. C. Reimer, P.
     Brown, and N. Martens. Fading Away:
     The Experience of Families with Terminal
     Illness. Amityville, N.y.:
     Baywood, 1995. Despelder, Lynne Ann, and Albert Lee
     Strickland. The Last Dance: Encountering
     Death and Dying, 4th ed. Mountain View,
     Calif.: Mayfield Publishing Company,
     1996. Diamond, Nina L. Purify Your
     Body: Natural Remedies for Detoxing from
     Fifty Everyday Situations.
     New York: Random House, 1996. Doka, Kenneth J., ed. Children Mourning,
     Mourning Children. Washington, D.c.:
     Hospice Foundation of America/taylor and
     Francis Publishers, 1995. ----. Disenfranchised Grief: Recognizing
     Hidden Sorrow. Lexington, Mass.:
     Lexington Books, 1989. ----, ed. Living with Grief When Illness
     Is Prolonged. Washington, D.c.:
     Hospice Foundation of America/taylor and
     Francis Publishers, 1997. Field, Marilyn J., and Christine K.
     Cassel, eds. Approaching Death:
     Improving Care at the End of Life.
     Washington, D.c.: National Academy
     Press, 1997. Frankl, Viktor E. Man's Search for
     Meaning. New York: Pocket Books,
     1984. Golden, Thomas R. Swallowed by a
     Snake: The Gift of the Masculine Side
     of Healing. Kensington, Md.: Golden
     Healing Publishing, L.l.c.,
     1996. Grollman, Earl A. Living When a
     Loved One Has Died. Boston: Beacon
     Press, 1995. ----. Concerning Death: A Practical
     Guide for the Living. Boston: Beacon
     Press, 1974.
     ----. Straight Talk about Death for
     Teenagers: How to Cope with Losing Someone
     You Love. Boston: Beacon Press,
     1993. Haller, James. What to Eat When You
     Don't Feel Like Eating. Hantsport,
     Nova Scotia: Robert Pope Foundation,
     1994. Hennezel, Marie De. Intimate Death:
     How the Dying Teach Us How to Live. New
     York: Alfred A. Knopf, 1997. Infeld, Donna Lind. The Hospice
     Journal: Physical, Psychosocial, and
     Pastoral Care of the Dying, vol. 12,
     no. 3. Washington, D.c.: National
     Hospice Organization/haworth Press,
     Inc., 1997. Jennings, Bruce, ed. Ethics in
     Hospice Care: Challenges to Hospice
     Values in a Changing Health Care
     Environment. Binghampton, N.y.:
     Haworth Press, Inc., 1997. Jevne, Ronna Fay, and Alexander
     Levitan. No Time for Nonsense:
     Getting Well Against the Odds. San
     Diego, Calif.: LuraMedia, 1989. Kessler, David. The Rights of the
Dying: A
     Companion for Life's Final Moments.
     New York: HarperCollins, 1997. Lang, Susan S., and Richard B. Patt.
     You Don't Have to Suffer: A Complete
     Guide to Relieving Cancer Pain for
     Patients and Their Families. New
     York: Oxford University Press,
     1994. Levine, Stephen. Who Dies? An
     Investigation of Conscious Living and Conscious
     Dying. New York: Doubleday, 1982
     (1996). MacPherson, Myra. Long Time Passing:
     Vietnam and the Haunted Generation. New
     York: Doubleday, 1984. McCue, Kathleen, with Ron
     Bonn. How to Help Children Through a
     Parent's Serious Illness. New York:
     St. Martin's Press, 1996. Mendelsohn, Robert S. Male
     Practice: How Doctors Manipulate
     Women. Chicago: Contemporary Books,
     Inc., 1981. Neaman, J. S., and C. G. Silver.
     Kind Words: A Thesaurus of
     Euphemisms. New York: Facts on
     File Publications, 1983. Nuland, Sherwin B. How We Die:
     Reflections on Life's Final Chapter.
     New York: Alfred A. Knopf,
     1994. Parachin, Victor M. Grief Relief.
     St. Louis: CBP Press, 1991. Quinlan, John. Loved and Lost: The
     Journey Through Dying, Death, and Bereavement.
     Collegeville, Minn.: Liturgical
     Press, 1997. Rando, Therese. Grieving: How to Go on
     Living When Someone You Love Dies.
     New York: Bantam, 1991. Reoch, Richard. Dying Well:
     A Holistic Guide for the Dying and Their
     Carers. London: Gaia Books
     Limited, 1997. Saunders, Cicely. Beyond the Horizon:
     A Search for Meaning in Suffering. London:
     Darton, Longman and Todd, 1990. Spufford, Margaret. Celebration.
London:
     Fount Paperbacks, 1989. Viorst, Judith. Necessary Losses. New
     York: Simon and Schuster, Inc., 1986. Waugh, Evelyn. The Loved One.
     Boston: Little, Brown and Company, 1977. Webb, Marilyn. The Good
Death: The New
     American Search to Reshape the End of
     Life. New York: Bantam Books,
     1997. Weintraub, Simkha Y. Healing of Soul,
     Healing of Body: Spiritual Leaders Unfold
     the Strength and Solace in Psalms.
     Woodstock, Vt.: Jewish Lights
     Publishing, 1994. Weisman, Avery D. On Dying and
     Denying: A Psychiatric Study of
     Terminality. New York:
     Behavioral Publications,
     1972.
     Acknowledgments
     I cannot thank Anna and her friends and family enough for their
gracious and valuable contribution; this book would have been impossible
without them: Jan, Lindsay, and Ellery Johannessen; Anna's sister Roseann
and her husband, Clifford Beutell; Anna's father, Stephen Megregian, and
her brother Steve Megregian; Jan's parents, Phoebe and Jo Johannessen;
Lockard "Lockie" Fuller; Wayne Westbrook; Tina McCarthy; Patty Williams;
Jane Bittner; Ann Wylie; Nancy DuVal; Linda Suarez. A special thanks
to Suarez for her grand cover-photo of Anna.
     Nor can I express adequately my appreciation to the experts who taught
me as much about life as they did death, dying, and bereavement: Kenneth J.
Doka, Dr. William Lamers, Dr. Ira Byock, and many of the other members
of the Association for Death Education and Counseling and the International
Work Group on Dying, Death, and Bereavement. St. Francis Bereavement Center
tops my list for caring counseling; included are past president Paul
Tschudi, current president Robert Washington, Grace Metz, and, notably,
child counselor Dottie Ward-Wimmer. Without the gracious input of Dr.
Kenneth Miller, Dr. Joe Kaplan, and the cooperation of the staff, Anna's
story would be most incomplete. Among them are Suzanne Krikawa, Darlene
Gebicke, Anneka Wheaton, Vivien Steinberg, and Rhonda Schoem.
     Although our friendship was far too fleeting, I remember and thank my
fellow trainees for the richness of our time together in the St. Francis
Center volunteer course: Nancy Muller, Delia Cordero, Mary Jo Devine,
Candice Evans, Amy Gates, Lisa Harris Kelly, Lisa Michelle Lewis, Janie
Miller, and LaShaun Williams. Also Pat Gouldner, who helped enormously
through a hospice volunteer course at Hospice Care of D.c.
     The Hospice Foundation of America was a major support in providing
advice and materials and in expediting the completion of this manuscript:
Lisa Veglahn, Sophie V. Berman, David Abrams, Jon Radulovic, Chris
Procunier, and Michon Lartique. Also Hugh Westbrook, president of Vitas
Health Care Corp. The dedicated former first lady Rosalynn Carter taught me
much in her books and lectures on caregiving. Other fine teachers were
Kathleen Foley, M.d., director of Project on Death in America and chief of
Pain and Palliative Services at Sloan Kettering Memorial Cancer Center;
Joanne Lynn, M.d., director of Americans for Better Care of the Dying,
Washington, D.c. My thanks to Olwen Price, of the Washington Post, who
deciphered and transcribed many long and rambling tapes.
     A secondary reward of writing this book is that I came to meet new
friends and to know many friends and family even better as we explored a
more serious side of our lives than the usual bonhomie of friendship; I
cherish the many discussions about life and death, religion and
bereavement, as well as the kindness of those who shared their own
experiences with death, dying, and grieving. (and, of course, I remain
grateful for those who put up with my trials and tribulations and
encouraged me to keep going.) Among them are my father,
     Douglas MacPherson, and my children, Michael Siegel and Leah Siegel
and her husband, Joe Drape (a special thanks goes to Leah, for her superb
editing suggestions). Also children-by-marriage, Andy Gordon and Vicki
Simons, Deborah Gordon and Ben Crow, Melanie Somers and Jonathan Gordon.
And, of course, grandchildren, who made me laugh, no matter how sad I
sometimes felt about Anna: Jessica, Hannah, James, Eleanor, and Sam. Other
helpful friends include my sister-in-law Ann and her husband, Harvey
Kramer; Bob Sherrill; Marthena and Joe Cowart; Gar and Sharon Alperovitz;
Janet Donovan; Barbara Raskin; Faith Jackson; Jeff Frank; Molly Ivins;
Betty Friedan; Jack Skuce; Richard Rymland and Cathy Wyler; Robert and
Prudy Squier; Molly and Jim Dickenson; Linda Burgess and Bill Dunlap;
Hodding Carter and Patt Derian; Ruth Noble Groom; Tom Bryant; Len and Zelda
Glazer; Marilyn Bloom; Ruth Greenfield; Millie and Harold Cowan; Bob and
Alice Yoakum; Laura Cosgrove and her son, Kevin.
     Lisa Drew has managed an amazing feat --being a tough but enthusiastic
editor and a close friend through two books. Joy Harris is also a writer's
dream, a hands-on agent with savvy, who cares.
     Last--but forever in the forefront of my life-- I give enormous thanks
and love to my husband, Jack Gordon. His expertise in this field is matched
only by his loving patience.