Reflections on living with terminal illness
By Gail Walker
To my colleagues, friends, and loved ones:
I hope you will allow me to send one letter to you all, because I simply do not have the energy to do this individually. I have taken the liberty of providing an overview of what has been happening for me, in what is one of the worse bits of news of my life, and adding my biography (or obituary) at the end. I wish I could ease this for those of you that care about me, but I cannot think of a way to soften the blow.
On Monday of Fall Break, I thought that I had diverticulitis, a digestive difficulty common in midlife. On Tuesday, I was told I had a “pelvic mass,” on Wednesday “ovarian cancer,” on Thursday “metastasized ovarian cancer with a compromised lymph system and liver.” The good news, if there is any, is that the tumors are confined to the abdomen, and have not yet escaped into the heart, lungs, or brain. The physicians have given me a 5% to 20% chance of being alive a year from now. I was saddened to discover that there is no screening test for ovarian cancer. I have had regular physical exams, passed my PAP smears with flying colors, and been on a six month call-back program for shadows on my mammograms. But according to the Gilda Radner Foundation, there is no screening test for ovarian cancer, and it does not generally get diagnosed until it is in the advanced stages. I think this is cruelty bordering on criminal negligence in the health care of American women!
In the week of lag between diagnosis and beginning treatment, I took a medical leave of absence from my work at Alfred University, gave away my classes in mid-semester, reassigned my advisees, and finished off my last two scholarly works. One is the Entry Essay on “Medical Euthanasia,” which will be published in the Handbook of Thanatology by Sage Publications, a two-volume encyclopedia of everything related to death and dying, which will be published once in this generation. The other is the longer research work on “Medical Euthanasia: A comparison of the attitudes of thanatologists, health care workers, and university students,” which is going to Omega: The Journal of Death and Dying. I just couldn’t stand by and see two years of work go down the tubes and count for nothing. I also filed a revised Last Will and Testament, health care proxy designation, and life insurance beneficiaries designation. It amazed me how the decisions I had made while well looked radically different when viewed through the eyes of terminal illness. I also planned with my minister for my memorial service at Alfred, where I have spent my adult life, honored my mother’s ancestry by arranging for my physical body to be accompanied in transport by a kilted Highland Scot honor guard, designed my funeral service in the homeland of my youth, honored my father’s Cherokee ancestry with interment in our family’s cemetery on the ranch, and commissioned my tombstone with the internationally famous sculptor who will create and install the stone and bronze “soaring hawk,” adapted from an ancient Native American design. I am planning for the best outcome while preparing for the worst, and that frees me to take great joy in the dawning of each new day.
Many people have asked whether being an “expert” in the field of death and dying has made this process any easier for me. I have had to tell them that the roadmap is no substitute for the journey. Although much of what has been happening is familiar from my experiences gained from accompanying others in their time of tribulation, there is a level of poignancy that is distinctly personal. One of the harder parts was telling my family of my diagnosis. I finally confessed to my sister Barbara, and she ratted me out to my Mom. I just couldn’t find a way to tell Mom, and I am happy Barbara took care of that part for me. So now it is an open process, and Mom calls every day to find out how I am and how things are going. Much better! Mom told Judy and Dad, and Bradley and Billy and Nicole and and and … and now I am on so many people’s prayer lists that God must be getting tired of hearing about me. Prayers are rising on my behalf in numerous states and from several nations, phrased in the languages of Protestantism and Catholicism and Judaism and Buddhism and Islam, in secular humanism and Native American spiritualism and in the heartfelt and wordless yearnings of those who do not know but find hope in the need for a power greater than themselves and the natural universe. But I would appreciate being added to your prayer list, none the less. Perhaps the Great Spirit will find it more merciful and expedient to answer these prayers with my healing than to take me home at this time.
I was transferred into the care of Dr. Cynthia Angel in Rochester, NY. Angel, eh? Too cool! She is one of the best ob-gyn oncologists in the USA. I entered Highland Hospital for a week of tests, treatments, humiliations, and the tortures of “modern” medicine. There are so many high and low points in cancer treatment, I can’t even begin to address them all. Let us just say that the next generation of culturally diverse and predominately female physicians can give us all hope. My favorite of the new young physicians is Dr. Hiral (pronounced as rhymes with “Hero”); she has given me the gift of explaining that the chemo alone may knock back the tumor on my liver, the other tumors can be removed after the chemo has had a chance to shrink them so that they withdraw their tentacles from the surrounding tissue, and that they would have to excavate all the lymph nodes in the abdomen anyway to biopsy, so the spread can be contained. “In order to try and save you,” she said, “we will use every aggressive treatment known to science, and place our faith in the hands of God!”
Actually, in the hands of God and talented physicians is an excellent place to be when “yea though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me” (Psalm 23:4). In the intake interview, I had told the staff that I was allergic to penicillin and shellfish. The contrast dye used in CAT scan procedures is a non-ionic radioactive iodine compound. I went into anaphylactic shock at the moment of injection. All I felt was the sensation of being too hot, too cold, and then I blacked out. I awoke to an Emergency Room physician with a defib paddle in his hand, with benadryl running into one arm and epinephrine into the other, my body a royal shade of blue with hives from head to toe. “There you are,” he smiled. Even though clinical death hadn’t hurt at all, I am glad that I didn’t finish my life on that particular table. I hadn’t had the vital conversations with my family, my friends and loved ones. I hadn’t said “good-bye and God bless you” to my students and colleagues. My arrangements were not made, and the paperwork had not been completed. Even though we who work in trauma and loss are often better prepared than those who live without such immediate knowledge of the fragility of life, there was still so much left undone and so many people who needed to say those special things to me in person rather than having to stand at a memorial service and try to explain how our lives had intersected and what all it had meant to have known each other in those moments across time. One of the gifts of a chronic condition is the opportunity it provides for closure. Dr. Sarah Brabant of Louisiana, whom I first met when we were Citizen Ambassadors to Russia and then we were able to maintain our friendship at ADEC conferences across the years, says that what she learned from her AIDS relief work was that the big death really wasn’t, it was the series of little deaths that lead up to it that truly sear the heart. As painful as the process may be, it is also essential for the one who must leave and the ones who are left.
But I am not in a hurry to leave this beautiful planet in order to become one of “…a great multitude in white robes that no one could count, from every nation, tribe, people and language, standing before the throne and in front of the Lamb” (Revelation 7:9). I am receiving chemo and the doctors are “tweaking” the anti-nausea and anti-pain meds until we can find some things I can tolerate fairly well without messing me up too badly. I have to be vacuum needle aspirated of approximately 5 liters about every 10 days, because the tumors “weep” fluid into the abdomen, which finally makes it hard to breathe. The hypersensitivity that goes along with chemo amplifies all smells, tastes, and sensations. I can smell week old cigarette smoke in people’s hair and clothes. I cannot eat canned goods or beef (I can taste the blood, decay, and the moment of fear as the beast died… it is true!) Japanese and Middle Eastern food rides the best with me. If I survive this, I will never go back to the customary American diet… it is too literally “death on a plate.” I am in reverse isolation, which means that I am not contagious, but I am vulnerable to any infections or conditions that others may have, because chemo drastically lowers immune system function and depresses all red and white blood cell and platelet production. This means that cards and e-mails are welcome, but flowers and visitors are not! When my hair began to fall, I donated it to the “Locks of Love” program of the American Cancer Society, which makes human hair wigs for children with cancer. It pleases me that some bald kid somewhere will be wearing my ermine, my winter mink, my “silver fox.” I am scheduled for surgery on January 2, 2002, and there will be six more rounds of chemo at three week intervals following surgery. Once again, please pray for me, prayers for healing, and mercy, and courage, and the strength of endurance.
One of the other amazing aspects of being terminally ill is the opportunity to become a member of an elite group. In Highland Hospital, the 7-West Ward is a diagnostic group floor. One of the orderlies doing test transfers misread my room number, and delivered me to the fourth floor. When I pointed out his error, he defended himself. “Four is good,” he said. “It means you’ll be going home.” “I’m on 7-West,” I said. “Oh, hell,” he said. “I’m sorry. And you’re such a nice person, too.” I met so many nice people on 7-West. We chemo patients often cannot sleep at night, so we push our IV-poles around the quad and nod at each other or go to the chapel room with the aquarium and the excellent view of the night skyline and the waning moon. One night about 3:30 am, three of us met in the chapel to chat about something and nothing. She is 36, with colon cancer; I am 49, with ovarian cancer; he is Austrian and 54, with metastasized testicular cancer. We laugh about the pina colada running in his veins, since one of his IV bags looks for all the world like iridescent pineapple juice and the other looks like a bottle of coconut milk. His wife is watering the plants in the chapel and feeding the goldfish. We had to be there, because we could not walk the quad that evening. You see, the hypersensitivity to smell also means that we can smell death coming. On one side of the quad, a middle-aged black man was coughing out his last breaths to lung cancer, actively dying. On the other side, a young man with cancer of the brain smelled as though he had at most a day or two, and his family from New Jersey were clustered in the hallway, berating the physicians and nurses for offering only palliative care and morphine, blaming his young wife for his illness, wailing in their grief. Then they came to the chapel room. We spoke more quietly, and extended our sympathies for their situation. “It’s just that he is so young,” they said. “If he were only 36, or 49, or even 54, it would be all right. But to be so young, and so ill. Whatever are we to do?” Each of us looked stricken in turn and glanced at the others as our ages were announced, the radioactive stickers on our IV-poles shuddering slightly as we flinched. The family continued, unaware: “Can’t you give us some privacy here? Can’t you see we are in pain?” “Of course,” we said. “Please pardon our intrusion.” In their great pain, they could not even see ours and we retreated to our rooms, forgiveness flowing from our hearts even as we wiped silent tears on the shoulders of our gowns. The secret knowledge of the soul and the unwavering loyalty that combat soldiers and other comrades in arms share is also a part of the world of the terminally ill. Only those who also walk the valley of despair can truly appreciate the glad sight of the sunlight of hope rising on the mountain.
I have always loved Alfred University, and this tragedy has given me a glimpse of how many people also love me. The “get well” cards I have been taping up in the doors of my house, as though they were Christmas cards. I am running out of doors. The most amazing people are reaching out with offers of love, support, and practical help. I could not be more grateful. My beloved Yvonne has taken a partial leave of absence from her work in order to care for me, and she bullies me and feeds me and nags me and loves me without end. After my cat Mouse woke Yvonne up to call the ambulance one night because I could not breathe any longer, she has apparently decided that I am her kitten and cares for me accordingly. But I knew that I needed to share with you, some of the loves and friends of my heart, this terrible news.
And for those of you that know me only from my scholarly work, or do not know me at all, my biography or obituary could read as follows.
“It was a dark and stormy morning…” when I was born in the Kiamichi Mountains of Oklahoma. “Kiamichi” meant “screeching hawk” in the language of the original explorers. My childhood sped by while I went to school with people from 137 different native American tribes, which changed my world view and my dance steps forever. Oklahoma State University awarded my Bachelor of Science, Master of Science, and Doctor of Philosophy in Psychology degrees. Wisconsin offered the first professional post, but then they had their worst winter in over 100 years and I learned more about arctic thermals than I wanted to know. Chicago and Boston wanted me to work with their “special needs” kids, and Alfred University invited me to be a one year visiting professor in 1981. It has been a mutually satisfying arrangement ever since.
“Suddenly a shot rang out….” The post-doctorate courses were varied in scope, until Emergency Medical Training and Grief Counseling pointed me in a direction that few had boldly gone. The New York State Office of Emergency Services sponsors our Critical Incident Stress Debriefing Team and we provide “psychological first aid” to fire, police, ambulance, and hospital personnel who are involved in response to tragic and difficult incidents. I became interested in the prevention of Post-Traumatic Stress Disorder, which led rather naturally into an applied examination of the general dynamics of trauma resolution. The bulk of my scholarly work has been in the areas of death and grief, suicide prevention and post-vention, disaster management, non-violent crisis intervention, management of complicated grief, crisis-care in critical incident debriefings, trauma management, applied crisis intervention, the right to die, beliefs about afterlife, and medical euthanasia.
“The trumpets trilled a stirring song….” I am an unrepentant Type-A personality. I figure that if I am awake, there is either money to be made or fun to be had, and I’d better be getting after it. An amazing accumulation of awards and recognitions have flowed from the effects my works have had on others, although they were done for the joy in doing them. The students of Alfred University have repeatedly honored me with Excellence in Teaching Awards and the Alfies Award for Campus and Community Service, and my name lives on in Who’s Who Among America’s Teachers, Outstanding Americans, the International Directory of Distinguished Leadership, the Independent College Fund of New York Teaching Excellence Awards, the Sears Foundation Excellence in Teaching and Campus Leadership Awards, the Omicron Delta Kappa Leadership Award, and the Directory of American Scholars. It was my privilege to be selected as a Citizen Ambassador to Russia during the time of Premier Gorbachev, a founding member of the National Women’s Studies Association, and a delegate to the International Women’s Leadership Service in Geneva, Switzerland, which laid the foundation for the modern International Women’s Conferences. In spite of all that, my mom says that I still sound like an Okie, even though I talk as fast as a Yankee now.
“…and then they rode off into the sunset to live happily ever after.” My satisfactions are these: to teach well, to learn and make contributions in my areas of interest, to inspire the next generation of pioneers, and to live with joy in each day. It has been said that Sir Walter Mildmay, founder of Emmanuel College at Cambridge, was asked by Queen Elizabeth where he had been, and he replied: “Madam, I have been away planting an acorn. And when it becomes an oak, God only knoweth what it will amount to.” As an heir of the contributions of civilizations past, I accept a corresponding obligation to the future.
In the hospital
On January 2, 2002, I reported to Highland Hospital for “Same-Day Surgery.” My New Year’s cocktail had been bowel cleansers. The nurse took me to the changing area and I stripped into my birthday suit, covering my chill bumps with a hospital gown, bonnet, and slippers. My family was invited in to wait with me. My mother stroked my wrist and cheek, mute and frightened. My older sister launched into the tales of our relationship and adventures from the beginning, taking pictures for the “photo-documentary” she had decided to make. My beloved wore a sad smile and squeezed my hand ever tighter, until my fingers ached from the strain. Judy was only up to age four when the nurses came to wheel me to the preparation room. The chill in the room was numbing, and my lips and fingertips were soon blue. Bodies bleed less when they are cooled. The anesthesia IV was inserted, and the nurse chatted while we waited for the surgical team to assemble. She discovered I was a Professor of Psychology at Alfred University and a Crisis Debriefer for the New York Office of Emergency Services. She sought my counsel about her daughter’s boyfriend, who a few months previously had committed suicide by drinking antifreeze mixed with Gatorade. I made several suggestions to help her understand the process of suicidal logic, to help her daughter with the mixture of emotions that most survivors of someone else’s suicide feel, and to reaffirm the importance of living fully in each moment with all the love and joy one is capable of experiencing. Finally at peace, she placed my CAT scan, X-rays, and laboratory reports on edge on my stretcher and left the room. The manila folder in the front was marked “Tumor Registry,” and as I was wondering exactly what that was, the folder fell open under its own volition. The summary page was sky blue, and the list of tumor sites was long and frightening. “I’m dead,” I thought. “Even if I don’t die on the table, I am dead.” I reached out to shut the folder, and offered up a most sincere prayer. Unto God I delivered my life and my soul. “Save me if you will, guide my surgeons in their work, please let me sleep through the operation, but if it is your will, take me home and allow me to serve at your throne, or somewhere in the kingdom to come, in Jesus’s holy name, Amen.” I opened my eyes to see the anesthesiologist: “I am going to slip a little sedative into your IV now.” “Okay,” I said, and lost consciousness.
The diagnosis of ovarian cancer was a bit of a misnomer. The cancers were located not only in the ovaries, which created the need for a complete hysterectomy, but also in the mesentery of the intestines, in the “fat wall” that layers the interior of the abdominal cavity, and saturated the spleen but only spotted the liver. Removal of the spleen also required a slice be taken from the arc of the stomach. In spite of all that, I am lucky, so very lucky. The chemo had shrunk the tumors markedly, making their edges clearly defined for more precise removal. They were more localized than expected, and I was in better shape both physically and in response to chemo to be able to withstand an extended surgery. The incision ran 12 inches, from diaphragm to pubic bone. A collector tube was installed into the abdominal cavity in order to route the blood seepage into a vacuum bulb until the kidneys could recover sufficiently to process the wastes and the overflow.
I returned to consciousness in a private room, aware of the sensations of sun on my skin and a single tear running down my cheek. My loved ones whispered: “We are here, and you are going to be fine, just fine. We love you so much. Don’t worry, just sleep.” And a hand of love wiped away my tear, cradled my face, brushed my brow. And I slept, and woke, and slept, to wake again.
The nursing staff at my hospital was phenomenal. With gentle firmness, they came to minister to my physical needs, to soothe my fears, to ask about the level of management of pain. They taught me to use the morphine pump. They brought recliners and blankets and pillows for my family. Theresa taught me to use the bed rails to lever my body from the bed for the walks to the bathroom, the doorway, the hall. Amy found veins for the new IV sticks and the daily blood tests, even after the veins began to balloon, to collapse, to hide. After the techs came to collect vital signs, there would be Tigerman singing softly in the night: “Tango with me to the can, and I will be your Tigerman.” Afterwards, he would lean against a wall and slip up the sleeves of his scrubs, allowing a glimpse of the Burmese tiger on one shoulder and the Aztec jaguar on the other, his gleaming grin like the Cheshire Cat floating in the shadows. Kyle traced the location of organic farmers and ranchers in my area, because cancers feed on sugars, preservatives, and toxins, and a living foods diet will be necessary for me the rest of my life. As I move further from the last chemo, hair growth resumes, and my head was in transition from “kiwi-head” to “hedge-hog.” I had decided that if I had to do this thing, I was at least going to do it with style, so I had begun a collection of funky hats, cool scarves, and an assortment of “head jewelry” which could be worn on those hallway walks. A strand of golden snowflakes from Christmas tree tinsel became my halo. I embroidered Native American designs on a chamois cloth headband, and finished it in pearl trim. A complex garnet necklace was adapted to become my Sythian chieftain headdress. The staff loved it, and told me that I was setting a new standard for chemo patients. They helped me face my recovery with knowledge, humor, and persistence. I love them for it.
Observations on the process
My father weeps for me. To mention my name or to describe to anyone the facts of my situation makes his eyes well up in tears. This is the pioneer who has prided himself all of his days on being a manly man, of never admitting weakness or wrong. Once I heard him say that anything that had ever attacked him, he ate. He is a combat veteran of Pearl Harbor, at various times in his life a rancher, a fireman, a medic. He answered the emergency call to an automobile accident caused by a drunk driver, to discover that his parents were becoming the fatalities. The only time I have seen him cry is at the funeral of his mother. And yet, without control or shame, he weeps for me. While my doctors spoke of my battle with cancer, the image in my mind was of Bugs Bunny and Yosemite Sam playing Legionnaires, in the scene in which Yosemite Sam tells Bugs: “Rabbit, I’ve got you out-numbered, one to one!” If the disease is going to recur, it will probably resume within a two year interval. Five years marks the magic time in which relapse becomes unlikely. Dr. Angel says that if we arrive at that time, she will have lost all interest in me and will transfer my care to one of her colleagues. I sincerely hope we arrive at that day. But in this interval of time, my terminal diagnosis has forced a confrontation with mortality for both of my aged parents, who for several years have been preparing us for their eventual passing. That talk abruptly ceased, and my mother ordered me to take “no cuts and no ups.” As a fifth grade teacher for many years, she relates that the students would often allow their friends to cut into the line, to move up in sequence. For their daughter to become at immediate risk violates the principle of the passing of the generations, each in its own time. Although they live busy lives far away from my New York home, my mother was at my side just prior to surgery, paced the waiting room, wept in eventual relief, and tended me during my immediate recovery with great strength, endurance, and grace. Sometimes a child just needs the mother, and I will always be grateful that she could share that part of the journey with me. But that also means that her anxieties were immediate and concrete, while my father’s are more amorphous and complex. Because of the recurrent strokes he has suffered, he was prepared to be the next of our family into the grave. He faced this eventuality with courage and stoicism, but was unprepared to watch me face my demise out of sequence, out of time. To lose me, even though our relationship has been more difficult than those he has with his other children, is simply unacceptable. Perhaps when I can see him in person, the warmth of our loving embrace will enable him to hold the grief at bay. But in the meantime, my father still weeps for me.
Others weep for other reasons. Many emotions come to the surface in a palliative care ward, and the forced intimacy of our shared space means that we cannot protect ourselves from all of the others, even when we try. I keep my door closed, because infections float in the air and cling to the surfaces of people and things in hospitals. It also prevents the prying eyes of passersby from casually invading those moments of solitude, musing, despair, pain. But the sounds float through the closed door, the sounds of the daily “Code Blue”; the man in the next room who pitifully sobs: “I don’t want to be here, I want to go home; please, I don’t want to be here; please, let me go home”; the man who screams in the night, screams without ceasing, even when he has enough morphine in him to take down an elephant. Across the quad is a woman whose mother is in her final decline, and each time she sees me on the arm of my mother, she weeps. The freshness of her grief is triggered anew perhaps by sympathy for our similar plight, perhaps because I still have my mother while she is losing hers, perhaps by the reversal of age roles, implying that “…but for the grace of God, there go I,” perhaps by the memory of my words of kindness to her the night she could not reach her father by phone. I told her that 7-West could be one of the most difficult places on the planet to be, and yet there was unlimited love and support within her reach if she would but ask. I told her that I would include her and her family in my prayers. I told her that the struggles of life were what gave strength to our spirits, enabling us to fly. And each time she saw me, she smiled and then wept.
It is in the children’s eyes that fear and intrigue blend, and some step behind the parent’s legs to continue their wide-eyed scrutiny. The woman who was told of her diagnosis only moments before I came around the corner ran her eyes from my eyes to my isolation mask to my hedge-hog hair to my IV pole to my vacuum tube pulling blood and fluids from my abdomen and depositing it in a small bulb pinned to my hospital gown opened her mouth in a silent scream as her eyes welled up in terror, looking from the exterior evidence of my illness into her future. But it is in the eyes of the bedridden that the surgical shuffle takes on a different meaning, my slow steps and arched posture capturing a freedom that they will never know again. I am living, and they will not, and in that hallway glance is the poignancy of envy, loss, and resignation. Within moments or days, the “Code Blue” will be for them, and then the staff will quietly inform the family, remove equipment, strip the bed, and install the next patient. To each the best of care until the end, and then to begin again. The faces change, but the dance of life and death repeats eternal.
Being with those who surround us
Many people have extended their well-wishes, and have asked what they could do to help. Some of us are better than others at being open and easy in our manner with those who surround us. As could be observed on any afternoon in the infusion center, survivors do talk among themselves more honestly than we do with virtually anyone else. The social workers and chaplains and family members are sometimes taken into our confidence, but we will often protect them in small to large ways from the full honesty, from the raw experience. My friend Lana Meissner, a breast cancer survivor, wrote a beautiful card early in my illness that contained the “Top ten things cancer taught me.”
With her kind permission, I share her insights here.
“10. Don’t use up your energy being strong for others. Be strong for yourself while understanding that others are fearful for you. I found that people expected me to be strong because I was someone they counted on to ‘be well.’ My vulnerability made people scared because ‘Oh my God- if she can get it so could I.’
9. Accept people’s attempts at kindness, bizarre and off the mark though they may be. I learned that some people had odd ways of expressing concern but finally came to appreciate the attempts, though not necessarily the expression itself.
8. Ask for help, specific help. People want to help. If it takes too much energy and time for you to ask, someone can be your ‘help coordinator.’ Then all you have to do is make a list of things with which you need help.
7. Encourage the people taking care of you to take care of themselves so they can gather the strength and resources they need to continue to support you.
6. Indulge yourself, whatever that means for you! Try to laugh and have some fun.
5. Ask for more help. Yes, I know that this is a repeat but this was the hardest thing for me because I am so private and self-sufficient. You will be amazed at how grateful people will be to be asked to help out, especially if you ask them to do something they are good at.
4. Go to the top people for medical treatment. I have never regretted for a minute driving to Rochester to see my oncologist. I was there yesterday for a checkup and those visits really keep me going. You deserve the best.
3. You are not defined by disease. ‘Cancer cannot cripple love, shatter hope, shake faith, destroy peace, kill friendship, suppress memories, silence courage, invade the soul, steal eternal life or conquer the spirit.’
2. Choose a champion and a story. I found it helpful to have a champion, someone I could turn to in my mind’s eye for strength, wisdom, and courage. For me, St. Michael and the dragon worked. For you, …?
1. The top thing I learned was to be honest and tell my own story, the whole story. People were so good at speculation and making up stories beyond the wildest imaginings. I found that if I was vague, people would think the absolute worst. I also found that there was an unspoken, maybe unintended, competition among people to see who had the ‘latest and greatest’ inside scoop. I finally spread the word: ‘If you want to know what is going on or how I am doing, call me!’
I am offering you the support, encouragement, and sympathy of one who has ‘been there.’ Always, Lana.”
Although I am at risk of violating the unspoken contract of selective confidentiality, the survivors can be breathtakingly forthright with our honesty about our experience. My friend and neighbor Carla Koch, a breast cancer survivor, was stunningly eloquent in her letter of December 22, 2001, and I relate the text with permission.
“Dear Gail, It’s late in the evening the day after solstice- a day with more light in it than yesterday. I’m sitting by the woodstove, thinking of you. Thinking that I am one of only a few who really know what you are going through. It’s a literal ‘going through,’ but to where? And when? To a place that is not death, to a time of no more crying. We survivors create a sisterhood, sometimes unacknowledged but always there. We are strong women, all of whose female bodies have gone sort of haywire. And we are stuck in a place and time of patriarchal medicine that uses war metaphors, that takes a shotgun/ shot-in-the-dark approach because no other paradigm has yet emerged, that disfigures us in order to save us, that turns us into guinea pigs, that asks us to be complicit in their bumbling experiments because if we resist and we die, we have only ourselves to blame.
Writing this summons up the anger in me. One account I read said anger in the face of cancer is beneficial: it motivates you to do all sorts of things with an edge of defiance, not compliance. Being married to a doctor who is as fine a person as Bill was so hard. He represents the medical establishment which seems intent on causing as much damage as possible without killing you (the disease kills you, they’d say, not the treatment), and he is a human person with a huge, caring heart which was never adequate for my needs.
I was 36 when diagnosed with stage 2 breast cancer. I have 3 sisters and no brothers and no one I ever knew had cancer because people couldn’t say the name. That’s not quite true, but I did know that a great-aunt on my mother’s side had died of breast cancer. I since learned that my great-great paternal grandmother also died of breast cancer. In 1979, the word chemotherapy was as outside my vocabulary as burkha, chador, or hijab.
For a year or more, I cried every day. I put on a brave face to the public, but alone, I wept. I read a lot about cancer, but relatively little seemed to help with the getting-through part. I thought about death all the time. I often craved it. When I told my friend that the only reason I had to stay alive was that Julian and Reilly would be too devastated, she berated me- saying that I had to get a grip and value my life for its own sake. That kind of thinking didn’t help me at the time, though. I often felt so alone. Mine was a self-willed isolation perhaps, but then no one I knew or knew about seemed to be going through what I was. You have shown all of us a more open side. I- and others- will call that brave, tough, affirming. It is all of those things, yet maybe you too are being one thing in public and another in private.
Twenty-five years ago, neither my sense of humor nor my sense of metaphor, both quite developed now, were available to me. You seem to be in a place and time when both faculties can be called upon to sustain you. I’m impressed. No, I’m in awe of your capabilities. Writing your obituary as you did with such forthrightness– Brava! Brava! But I am one of the few who know how hard it really is. I already knew life is precious. Did I have to be tested so relentlessly?
Gail, I’ve written this perhaps more for me than for you, but it is for you that I want to be writing, to be reaching out. I am here for you, truly here, just when you are facing the possibility of being not here. What are the things that can hold us in the here-ness? Love? Time? Medicine? Stories? Beauty? Family? Spirituality? Sisters? All of these together? You are in a moment now as if the hot air balloon is trying to rise, to take you away from us, and we are all mobilized to be the strings that hold you down. Hold you near. Hold you now. Love, Carla.”
As always, we cannot know the many meanings that others attach to our experience. In my work with the best and brightest students from the next generations, I have become aware of how many of them have already been touched by the loss of their loved ones, while many more have escaped relatively innocent. One of the hard parts of this process for me was to give away my classes at mid-semester, to consign my students into the care of other professors who stepped into the breach of service for me. I visited all of my classes several times over the course of the rest of the semester, to apologize for abandoning them, to brief them on the process of my illness and treatments, and to inquire about the progress of their studies and their lives. They liked my funky hat collection. They listened with intensity to my words, and many wept for me. But the lessons they took from the experience were written on their hearts rather than their notebooks, and life itself will give them the final exam. Their collective response was captured by one of my senior students in Introduction to Psychology in a letter dated November 29, 2001, and I relay his thoughts here with permission.
“Dear Dr. Walker: All of us probably looked very sad today; it’s because we are frightened for you. People of your worth should not be subjected to pain. It will be all right, though. Of all those that endure hardship, you are the most prepared, because you are a scholar of the mind and possess the brightest character. Where the mind goes, your body will follow, and there is NO doubt in my heart that you will most definitely be a member of that percentage that recovers. It will take time and labor, but you will be back soon because you’re strong and all of us love you. In the future, may we show the courage that you are teaching us. Seth Hunter Perkins.”
But what have I learned from the experience?
On a beautiful winter morning in late January, I soaked and removed the bandages from my incision. The staple marks are receding, and a thin purple line marks the entry site. I intend to wear my two-piece to the pool this winter and to the beaches this summer, as usual. I hope the children ask me: “Lady, what war were you in?” So now it appears that I may live at least for a while longer, and perhaps long enough to die of something else. This is a blessing that I do not take for granted. It is a precious gift, from the many people who have been directly involved and from the many who have named my name before God, lifting prayers on my behalf. I have certainly learned a lot from the experience, as costly as the lessons have been. I have learned that any morning I wake up alive is the beginning of a very good day. I have learned that it is the love of family and friends that make the hardship of illness and recovery both bearable and desirable. I have learned that my animals, my two dogs and my cat, love me personally and particularly. Thinking back on their responses made me aware that my dogs had registered my cancerous smell at least a full year before a medical diagnosis was obtained. They did not get their usual woods walk with me during my stay in the hospital or for the month of recuperation. When I finally could go into their pen, they carefully smelled the incision and my changed scent, and then Odin flung her body against my knees and smiled. Ever practical, Scout merely wanted to show me where the deer had come right up to the pen. We could not walk far in the snowstorm, but they were overjoyed to herald a new beginning.
I have learned that people appreciate the opportunity to affirm the special moments that we have shared. Some have wanted or have given acknowledgment of the important ways that we have touched one another’s lives. Some transformed their grief and anger into activism. Several of my previous students made memorial contributions to the Gilda Radner Foundation, to provide financial support for the continuation of research efforts to develop an effective screening tool for ovarian cancer. Several made memorial contributions to the American Cancer Society, so that they can continue to provide free housing to the families of cancer patients during their hospital stays. Several young men donated blood to the American Red Cross, so that healthy blood transfusions would be available to those in need.
Several young women donated their hair to the “Locks of Love” program, so that children undergoing chemotherapy could have human hair wigs. Hundreds of people sent e-mails or letters of support. Some people wrote poetry and created works of art, and one gathered these letters and poems and photos into a book “to keep you company and give you inspiration to survive the dark hours, surrounded as you are in our love.” I learned that keeping an open heart is even more important than keeping an open mind. I have learned that our lives touch the lives of others in ways we cannot consciously fathom. I learned that changes in physical appearance and capabilities mean very little to those who love our shining spirits.
Roles may change, who provides what contributions to the relationship may alter, expectations are adjusted all along the way. Those who care for us for the right reasons continue, while those who care for the wrong reasons quickly drop away. I learned that the people who truly love me would not accept a negative outcome unless they had no other choice. They patiently listened to my talk of the final preparations I had made, and promised to carry them forward to fruition if need be, and then they told me to think of it no more. I was to devote every fiber of my being to survival, because they needed me to focus on becoming well again. I learned that life sometimes gives a person a second chance.
I have learned that people with cancer or other life-threatening illness do not truly change in their character; they just become more intensely themselves. To live with a subjective sense of the shortness of time remaining, and to endure painful treatments and disrupted life patterns seems to give us permission to act out our conflicts and emotions more boldly than we may have done at other points in our lives. It is the apparent loss of control that is the hardest element for many who are living with terminal illness. Some become more querulous and demanding, seeking to control any element that they can. The infusion center nurse says that many of the elderly will attempt to select which vein will be used for the IV, systematically eliminating all possibilities. A few patients schedule and re-schedule their chemo appointments behind every other distraction that they can create, becoming in effect “too busy” to save their own lives. Some give up every interest and activity in advance, refusing to even see their old friends or play bridge or go fishing as they may have done in the past, passively lying down to their fate. But the majority still do everything they used to do, within the limits of their altered capabilities. Our lives may have catastrophically changed, but they are still precious in every moment remaining.
All of us do some form of life review. We tell and re-tell the important events, and almost all of us spend quiet evening hours, while our families sleep, re-arranging the photograph albums. There is a need for our stories to remain alive, even if it is only in neatly labeled photographs interspersed with commentary. How hard this whole process must be for the ones who must do it alone, with no one to share or care! And yet there are those “midnight moments” when we are all alone, and no one else can truly comprehend the essence of our experience.
One of the places we breach the solitude is in the chemotherapy infusion center. To sit with an IV in our veins for five hours at a time with whomever else is in the treatment center today creates an instant support group and forum. These stalwart survivors are an excellent source of information about our disease and about our coping strategies. After all, the doctors know what they know, but we are the only ones who truly know what the life issues are and how to cope with them. But it is important to be able to decide what one does want to know, and what is too frightening to know yet. I have learned to ask myself the question: “Does knowing this make me stronger and contribute to my understanding, or does it make me weaker with worry?” And if it is the latter, I firmly tell them that I cannot hear this now, to please shut up, that they are scaring me and I cannot accept this knowledge at this time. Without fail, they apologize and alter the course of conversation. The power of the mind is great, and everyone’s illness is different. I have learned to take care in what I allow myself to imagine, so that my body does not program itself in some of the suggested directions and instead follows a path of wholeness toward wellness.
I have also learned that I can be more brave for those moments when I must be if I admit and pass through those moments of weakness as they occur, so that they do not accumulate. All of us feel the fear. True courage is not the absence of fear, it is doing what one must with strength and integrity in spite of the fear. Mixed with the fear is mourning. Mourning one’s own passing is actually enlightening. We survivors sort priorities consciously, as time and energy become limited. It may hurt the feelings of some family members and loved ones when we are not available to them when they need us to be, but sometimes we must choose to save our energy for those with whom we still have conflicted relationships, or with the ones we need the most. Sometimes it is the people with whom we have a stable and safe relationship that we can choose to ignore in order to use the energy for ourselves or the ones with whom we have unfinished business. We can only hope that those people can feel that it is an honor to be the ones that we can count on, and can understand that even our recurrent silences are an indirect acknowledgment of our love.
It has been oddly interesting to be forced to become my own test case for decisions about medical ethics. I have learned that I truly believe in the Patient Right to Self-Determination. No one else can know what an individual can endure, or would desire at each changing stage of an illness. I have learned that while pain is necessary but manageable, suffering is not ennobling. There are many types of pain, ranging from the stabbing physical pain, the reminder pains, the phantom pain as the nerves that served the missing organs send their garbled messages of distress, the varieties of psychological pain, and the existential ones. Each of these types of pain will respond to recognition and certain types of treatment, or can be endured. But suffering is different from these, and often is a by-product of under-treated pain. One of the commendable aspects of Highland Hospital’s 7-West program is the incorporation of aggressive treatment protocols and effective pain management and the provision of hospice services all together in order to provide comprehensive palliative care to each patient.
No one in their right mind would choose terminal illness as a learning experience, but it can be a rich one. I knew I was becoming more hopeful about my chances of survival when I bought green bananas, with a sense I would still be among you when they were ripe. For me, what started out a burden somewhere turned into a blessing, and flew in joy. Most of us do not know when we have an appointment with mortality. The Native Americans tell us that everything that breathes, eventually dies. There are no exceptions. I have always had the hawk as my totem animal. When you live your lives with the wind in your hair and the sun in your face, and you glimpse the soaring hawk, the screeching hawk, the winter hawk, the standing hawk, know that my spirit flies free. As the Navaho “Beauty Way” prayer states: “It is beauty before me, beauty behind me, beauty below me, beauty above me. In beauty it is finished.” And yet I find solace in the words of Rabindranath Tagore from “The journey nears the road-end”: “…But at this deathless moment of life, O Death, Your hands are filled with treasure.”
Most importantly, I have learned that every moment is precious and fleeting, that every person is unique and irreplaceable. I thank you all for your prayers and kind thoughts, and for the love we have so freely shared. I thank the Creator of All Life for allowing me more time. May the Great Spirit continue to bless us and keep us, in all of the ways in all of our days.
Related: Doc Walker is Dead