At the time of my bone marrow transplant for Hodgkin’s lymphoma, without retrospect’s safety net, morning came. I remember the scent of bagels from a biscuit shop across the street from the hospital. Sprinklers doused flower beds of marigolds, daffodils, daisies. I walked with my mother and sister to Swedish Hospital on Pill Hill in Seattle, entered, heard the elevator doors closing, sealing me off from the world of people worried about getting to work, kids scrambling for buses, sunlight amid trees. I did feel lucky that the official Fred Hutchinson Cancer Research Center inpatient facility didn’t have room for me. Devoted only to transplant patients, it seemed a dark forbidding place. Death, a gentleman in top hat and overcoat, held the door for families who walked in and didn’t leave. Instead, I would be committed to Eleven South West, a wing of the huge Swedish Hospital which the Hutch used for overflowing cancer cases. I much preferred being in a place called “Swedish” which conjured images of vigorous blond women, meatballs, and massages. Also, I liked it because it seemed more normal—white and sterile, instead of sinister and shadowy—and teeming with diversity. I may have been preparing for a torturous exit, but in the same facility, there were babies being born, tonsillectomies, broken arms, concussions, heart attacks. I didn’t want to be surrounded only by people like me. In Swedish, there were different dramas taking place, more like living than death.
Despite having visions of nineteenth-century asylums, I entered my laminar airflow room on 11 SW in April 1986 with relief and terror. It certainly was not the torture pit of my nightmares. But it was horrifying in its anonymity. Welcome to the institution, baby! There was one hospital bed in front of a wall chock full of mysterious equipment—suction tubes, pumps, monitors, gauges, plugs. There were two chairs covered in blue vinyl, a television, stationary bicycle, clothes cupboard, and tray on wheels. From the hospital corridor, you entered a small room, a vestibule where you anointed yourself before seeing me. Okay, you actually scrubbed your hands with antiseptic soap and put on a surgical mask to protect me from germs. During my pre-transplant chemotherapy, you also had to don shoe covers, gown, and paper cap. It was actually fun after a while to watch the doctors go through all this just to see me, made me feel like royalty instead of a usual denizen of purgatory. Once dressed and cleansed, you could pass through a second very solid door, making sure the door to the general corridor was closed first, letting no germs in. The bathroom and wall with television were to your left, the bed to your right. Opposite the door, a huge window with triple-paned glass looked down on a magnificent view of St. James Cathedral. In the distance, there was Puget Sound. If this had been a hotel, I would have been very impressed. The triple-paned glass on the window was to ensure no breeze permeated my atmosphere; I was to live on rarified air pumped in through special vents. At the time, I also thought the extra panes discouraged despairing patients from jumping—momentary flight, then nothingness.
I grew used to the view. My mother and sister went to mass almost every day and certainly every Sunday at St. James. I enjoyed looking down on its copper dome turned green, watching birds spiral around its spires, pictured people kneeling, my mother and sister praying for me. Later my mother joined the choir at St. James so she could sing, her alto voice joining with others in familiar hymns. At night, I watched lighted ferries cruising back and forth between mainland and islands, wondering about the people onboard. Did they know how beautiful their transport was? I wanted to tell those strangers, “I’m here,” watching them from afar, dreaming about their troubles, their thoughts, between moon and sea. But none of them would ever know about me. None of them would ever see.
The first stage of my transplant, two days’ infusion with Cytoxan, enough if not to kill, then at least to poison organs, cells, and hopefully my tumors, would begin after dark. A few hours before, an intravenous drip would be hooked to the catheter in my chest, an entry for the Cytoxan and pretty much all the nutrients and fluids I would need for weeks to come. I would also have to suffer the indignity of a urinary catheter during the chemo because the waste products of the treatment were so toxic, they shouldn’t sit in my bladder. The catheter would drain urine continuously in the hope of saving this vital organ, and the rest of my body, from more than necessary damage. Given the prospect of at least a month of nausea, I relished my last meal, like any inmate of death row. Infantile regression was definitely the way to go: hot dogs, potato chips, french fries, corn, ice cream, and cookies.
I thought I might spend my last free afternoon walking around or laughing at soap operas with my mother and sister. Instead, I signed my life away. As a research institution, Fred Hutch always tries experimental drug protocols and medical procedures out on transplant patients. As the insurance company’s initial refusal of coverage attested, I was about to undergo a near-to-experimental treatment for Hodgkin’s Disease. Legally, the Hutch couldn’t touch a patient without permission. So my mother and I (at fifteen, still her dependent) were taken into a room with two doctors and a nurse. The doctors represented the Hutch. The nurse served as translator for my mother and me, helping us decipher sheaves of medical terminology and legal jargon. Of course, before we even saw the papers, the interns performed a little number called “worst-case scenarios.” In order to fulfill their legal obligations, the doctors had to explain everything bad that might happen to me. The initial effect was like getting beaten up in an alley: the blows kept on coming and coming, in unexpected places. After a while, however, it started to seem funny: you can only die once, I wanted to chuckle. Pneumonia, heart failure, liver and kidney failure, graft vs. host disease, paralysis, blindness, hearing loss, incontinence, dialysis, baldness, incurable infections, blood disease, AIDS. It was a bizarre and terrible poem, this catalog of dysfunction and dismemberment. A more audacious person would have bid goodbye to present company and blithely walked in front of an electric bus powering along Seattle’s streets.
According to the soothsayers, I had a 50/50 chance of surviving the transplant and a 20% chance of “long-term survival.” The nasty glitch of course was that in their terminology “long term survival” meant five years. I was grateful to be both a teenager and Katherine Davis because of my essential pissant perversity—not a heroic quality, but it would do. I was still the girl who as an infant cried until I choked, screamed until I vomited, then fell, exhausted, in a corner of my crib. I was the girl who would launch assaults on my mother until she surrendered to my petty demands: no dusting under the dining room table, no vacuuming beneath the plants. As an aspiring ballerina, I danced until my feet bled. As an ambitious student, I did a semester’s worth of trigonometry in a few weeks of radiation sickness. A small ugly dog with iron teeth, I prepared to clamp onto the nearest arse. They would have shoot me with tranquilizers, drag me away. I would be no Beth March.
The drugging came soon enough, as the sun set on my last day of freedom. Like most things, the transplant was easier once begun; it was the imagining which spread like poison and there was nothing to be done. Here, I should be incoherent, barely capable of speech, but instead I’ll let you imagine it: the urinary catheterization, the intravenous lines affixed to the nozzles in my chest. First came happiness mixed with fear: muscle relaxants and anti-nausea medications that made me less than myself. I appreciated their dulling of the pain, but I wanted to be fully present for the biggest event of my life. I wanted to attend to the experience. Instead I slid into a horrified quasi-stupor, as if locked in a nightmare loop which kept playing and playing films of atrocities I hadn’t even lived through, as if the more I suffered, the more I sunk into some historical unconscious, where all the pains of the world were enacted in lurid detail.
It was well into my first course of Cytoxan that I found myself in the concentration camp. The soldiers lined us all—men, women, and children—up against a wall and shot us. I remember falling to the ground and being kicked with other bodies into a huge burial pit. They were going to burn us, leaving no trace of our existence. I tried to move. I tried to scream, “I’m alive! Wait, I’m alive! You can’t bury me!” The words never made it to my lips. I was mum and being covered with dirt and limbs.
I awoke from my hallucinations to see my mother and Ann, wide-eyed by the bed. The nurse, clothed in a golden halo of paper robe, hat, and mask, would come frequently to empty my catheter bag, filled not with gold, but red—blood, blood, and more blood. This was bad. It suggested I was not tolerating the chemotherapy well. If my bladder continued to bleed, they would have to cut back on the strength of the chemo—easier for my healthy parts, but also easier on my cancer, the villain of this whole scheme. Less chemo might allow the cancer to live. Hence, the more masochism, the better. It was becoming apparent to my observers that something was wrong with me, as I tossed and mumbled and screamed in my holocaust dream. My mom and sister, frightened to see so little of the conscious me, alerted the nurse, who grabbed me firmly by the shoulders and asked, “What is your name?” I struggled for several minutes, eluding the Nazis, then came up with “Kathy Davis.” “Do you know where you are?” was the next question. This required some debate, but finally I reached for “hospital… 11 SW.” I, the honor student, was scared to admit how hard these questions seemed. The nurse must have been satisfied; her face floated away.
My two days of Cytoxan were more like dream than reality; my soul lounged on the ceiling while my body sunk into toxicity. I remember it as a tableau vivant: twilight, my mother and sister bowed in blue vinyl chairs, and me, a sleeping pity child, cancer girl on a catafalque. Yet bodily functions persisted. Nausea, during my “ordinary” chemotherapy for Hodgkin’s Disease, had been neatly arranged. I had my treatments twice a month on Fridays, ate lightly for dinner, vomited all day Saturday, and recovered on Sunday, just in time to ride the bus to high school on Monday. Now, nausea was my lifestyle; eating, a childhood toy, banished except to memory. The nausea was like surfing gut tsunamis; first, a faint stirring, then waves frothing, cresting, pushing the boundaries—stomach, esophagus, throat—until the force couldn’t be stopped, and it rounded the roof of my mouth. At first, I fought the nausea, imagining fields of mint, evergreen mountaintops, Swiss kids yodeling. Then I learned the wisdom of the nausea master: welcome the upchuck, a temporary release. Worse perhaps than the physical suffering was the sense of being out of control: where will I vomit? when? I also wasn’t aware of the etiquette of the bowel movement. Chained to intravenous lines, vital signs monitors, a urinary catheter, was I allowed to get up to use the toilet? Too shy to ask, I had an accident in bed. This, I thought, is living—fifteen years old and unable to control basic bodily functions.
It helped that the suffering was structured, as I began my six days of total body irradiation. This is the unbelievably scary part, when the girl in the horror film opens the closet only to turn and find the knifed maniac upon her. Medical treatment is supposed to be your friend, right? For six days, an orderly would come with a wheelchair to my door, a gentleman caller, as Tennessee Williams would say. I prepared for my journey by being unhooked (what a spree!) from my machines. The nozzles of my chest catheter dangled like droopy tits. I dressed by putting on my best t-shirt and sweatpants, the fashion of all Hutch patients (when you’re fighting for life, belts, zippers, and buttons are the first things discarded). Then I gathered my stuff—blankets, tissues, emesis basin, music cassettes of ballets I’d never seen danced—and rolled away on my magic transport. I had to don a mask to keep out germs as I was wheeled from Swedish 11SW through an underground tunnel to the Hutch hospital facility. There, deep in the earth, was the total body irradiation chamber, a room which would fill with deadly rays while you sat like a chicken under the broiler. It seemed very Cold War to me—the secret passage to nuclear medicine where husky women in white coats checked your identity before admitting you for “treatment.”
Radiation was terrible because it was so lonely. You could chat during chemo, surround yourself with family and staff. Radiation, by necessity, was isolation. My mother, after the first day, didn’t even accompany me to the radiation box; maybe it was too horrible even for her, a woman who had endured everything, and much more patiently than me. Like all my other radiation experiences, this one made me feel like blighted goods, a fast food patty dropped on the floor then put under the heat lamp, later to be consumed. The orderly, my last human contact, would transfer me from wheelchair to bed. I felt like Emily Dickinson bidding adieu to Death, a gentleman in carriage, dropping her off at the grave. The radiation technician, safely ensconced outside the thick-walled, lead-lined chamber, would watch my progress on a television monitor, and sometimes shout through an intercom, “Okay in there?”
It was a dreary routine. Some psychologist had proposed that to fight the loneliness, patients be allowed to play music while being radiated. So while I lay there and two strange appliances that looked like furnaces started to hum (I wished the radiation could be colored or smoky so I could see it burn), I listened to Tchaikovsky. “Swan Lake” was classy, I thought, and it was beautiful—melodies of precarious balances, swooning falls, a white-winged creature faltering, finally bound by earth. The singing of the violin canceled out some of the buzz of the radiation furnaces. Like the barbecue meat that I was, I had to turn myself occasionally, not to be too done on any one side. Twenty minutes lying flat. Twenty minutes on each side. Then the door would be unbolted. I was back to fluorescent light, hospital corridors. I clung to my emesis basin for the precarious journey “home.” Tired and even more nauseous than I had been during chemo, I was grateful to get back to room 1106, crawl into bed, and temporarily forget my existence. On 11 SW, I was safe. All the patients were like me; nobody stared at our masks, nobody laughed when we vomited.
Almost immediately, the radiation began to take its toll. My hair began to fall out, much worse than during my initial year of chemo. Strands littered my pillow, stuck to my clothes, left a trail from bed to toilet, in case I got lost. I stared at myself in the mirror, got back under the bedclothes, and monitored my disintegration. The nurses saw me, morbidly watching, and finally one of them came to say my hair was a “sanitary concern”: in other words, it needed to go. So that night, after my mother and sister left for “home,” a nurse arrived in my room with her sacrificial implements—steel bowl filled with warm water, white towel, scissors. Although this ritual was meant to “empower” me, I would not be allowed to handle the blades because I was weak and at high risk for infection if I cut myself. That task was left to the professional. I think it was done rather late at night (10 pm) for several reasons. First, Juanita, my primary nurse, was not on duty; thus I would not identify her as the “tormentor.” Secondly my mother and sister were gone; they would not upset me further by crying as they saw me stripped of my “one beauty,” as Louisa May Alcott says of Jo March. I would have time to get used to the change before greeting my public, but not too much time, since I was tired and the hair shearer had a sedative at the ready. Thus it would be “eased” for me, except I am not a person who likes things made easy. I wanted to confront whatever harsh reality there was, wrestle until I had conquered it, and lay it down, a notch in my belt, a story to tell.
Snip, snip, snip. It didn’t take long before it was gone. I saved a lock for my mother in case I died before it grew back. I thought of Victorians who knitted hair of the dead into watch bands or jewelry clasps. I wanted to live for my mother, not leave her with a lock of hair pressed in a book along with a strand from my first haircut. I would do anything not to cause her pain. So I watched myself in the window, my bald dome superimposed over Puget Sound. I did not look like Yul Brenner or Telly Savalas. Thin and pale, my shaved scalp still stinging, I looked more and more like the concentration camp inmates in my dreams. On TV, Sue Ellen and J.R. strutted around. I felt like a human being, but one cast into outer space; earth was in the distance, growing farther and farther away.
Another rather devastating effect of the radiation was “mucositis,” the destruction of the lining of my digestive track, from mouth to stomach. Like cancer, this tissue grows rapidly and so is killed by the radiation which can’t distinguish “good” cells from “bad.” I woke up suddenly one night with a sore throat worse than any strep infection. When the pain became so intense I tried to avoid swallowing altogether, Juanita talked to the doctors and I was put on a morphine drip. Although initially, I resisted because I was afraid of getting addicted, the morphine made being alive bearable. I also feared that if I got an infection and started to die while on morphine, I would be too inarticulate to say goodbye to my mother and sister. If anything, I wanted a moment of clarity, of coherence, before lapsing into my final coma. I wanted my family to know how much I loved them. It was this aspect of the transplant I found hardest to accept. Pain, nausea, an immune system out of whack: being physically out of control, I could tolerate. It was consciousness I wanted to protect, the essence of me, my inner sanctum. This I did not want to compromise, but I did, when the pain was so great I couldn’t talk, think, or feel anything but misery. Slowly, I was being separated from the world that I loved, from the capabilities that made me human. This, I thought, is what dying is all about, being weaned from the world into nothingness.
Outside my window, the sensual world lived. It was still May. Some of the rain clouds had cleared from Seattle’s skies. People hurried on the streets, slickers draped over their arms. I saw them with their paper sacks of burgers and fries, leather purses and cases stuffed with lipstick, peppermints, books full of appointments for the weeks ahead. At noon, people would file into St. James cathedral for mass. Others smoked cigarettes in front of Pike Place Market or waited for buses to take them. . .oh, anyplace. I wondered what it felt like to walk the streets in the sunshine, trod on the grass, stare into a stranger’s eyes. I had gotten used to my sterile little retreat, like a widow in a lighthouse watching the sea or a cripple in a tower clinging to ropes to make the bell ring. I was a princess on a white bed, catered to by faithful attendants, an invalid made precious through her insurance coverage. There was so much out there, and I couldn’t get to it. Just as I had done in Auburn, New York, I pressed my face to the glass and dreamed the other side.
Katherine Davis has outlived cancer, emotional abuse, and mental and physical turmoil and finds new ways every day to thrive in a world that mostly misunderstands. She stands for hope, persistence, and the power of truth in connection with others. Her chapbook, The Anger Poems, is available for free download from don’t die press: https://www.dontdiepress.org/