More Life in Motion
In Full Out: More Life in Motion, Katherine Davis celebrates continuing adventure and persistence. Having survived an almost terminal cancer, she finds love in Rochester, New York, gets an education in the American south, writes about avant-garde poetry in Pocatello, Idaho, works reluctantly as a federal bureaucrat in Washington, D.C., and transforms herself into a fully healthy human being in the wilds of western Canada. Full Out narrates one woman’s coming to terms with a long history of emotional trauma and how she heals, finding her purpose, confronting her past, coming to full voice, full mind, full body, embracing a future she never dreamed she could have.
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Here’s how to paralyze a perfectly able human being without touching them.
For everything they do and don’t do, for everything they say and don’t say, for the way they look and the way they don’t look, for everything they are and are not, for everything that defines them, for everything that brings them joy and brings them pain: criticize them, bully them with words, find flaws where there aren’t flaws, say everything right is wrong, dismiss everything human as gross, ugly, unspeakable, horrific.
With any luck, your target will cease to exist. They may not be technically dead but they will find themselves locked in their own sense of uselessness and futility. No need to murder them outright: they will be too afraid to speak and be heard, too anxious to act because everyone is judging them and finding fault. They will be reduced to a blob without voice or agency. Congratulations! You have succeeded in annihilating the threat without a drop of actual blood on your hands.
This is the story of my destruction. This is the story of how I regained myself.
In Still Dancing, Katherine Davis tells the story of her early life as a girl determined to grow into a strong and articulate woman despite being hampered by a household of silence and control and by an almost terminal cancer that required a bone marrow transplant in 1986 when she was 16. Out of pain, desire, will, and reflection, she emerges as a figure of resilience, intellect, and art, overcoming adversity to observe the world’s beauty and diversity, and always affirm life’s continuing dance.
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But at the time of my bone marrow transplant, 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, an adjunct facility for the Fred Hutchinson Cancer Research Center, 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 Hutch inpatient facility didn’t have room for me. Devoted only to transplant patients, it seemed a dark forbidding place. Death, a gentleman in a 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 with people like me. In Swedish, there were different dramas taking place, more like living than death.
One of my favorite Emily Dickinson poems begins, “One need not be a chamber to be haunted, / One need not be a house; / The brain has corridors surpassing / Material place.” In other words, ghosts flitter within, not without. Many years after the transplant, I returned to Seattle, to Swedish Hospital, to wing 11 SW. I expected to see the chamber of terror I remembered: deranged patients chained to walls, grumbling for gruel and a wash. Instead I found a curiously benign place: sunshine streaming in through squares of glass, rubber-soled shoes squeaking on linoleum, televisions humming, lunch trays being stacked. Where was the alien corridor of death? It was there, I’m sure, lurking under antiseptic surfaces. The sickest people were always behind closed doors. Maybe bone marrow transplant had gotten easier over the years. And the real difference of course was that I was no longer sick. I had come back, a slick looking young lady in t-shirt and jeans, sunglasses propped on a full head of hair. It was so easy to take a promenade around the nurses’ desk. The only person who looked twice at me was a doctor in the elevator who heard me sharing memories of my transplant with my husband. I was a different kind of curiosity then.
Despite having visions of nineteenth-century asylums, I entered my laminar air flow 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, imagining 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 the 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 on death row. Infantile regression was definitely the way to go: hot dogs, potato chips, french fries, corn, ice cream and cookies. As a dancer or even as my mother’s child, I would never have dreamed of eating so much crap. Even in the weeks preceding transplant, I had watched my weight and exercised, driven to dance again if the transplant succeeded. Now I think if given the sentence of death, I would eat my way through the forbidden foods of the USA and collapse in my death throes, huge and happy, pie or fried potato in my hand.
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 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 a 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 release from fear and dread. Worse perhaps than the physical suffering was the sense of being out of control: where will I vomit? when? will the nurse have to clean up after me? how will I shame myself this time? After the vomit, I felt at peace in body and mind, if only for a minute until the churning started again. 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 was even more embarrassing that my liquid output—urine and vomit—had to be measured and charted to maintain the proper level of intravenous hydration. Normal teens resent supervision of any sort; here every inch of my body was monitored and recorded. I wasn’t capable of any rebellion except a thought: what if I flushed this puke myself?
The woman responsible for flushing my puke was my primary nurse, Juanita, a dark-haired pale-skinned beauty. She was beautiful because of her kindness; it radiated from her—from her eyes despite big glasses, from her smile despite twelve hour shifts, from her trim fingers and neat wrists. It is easy for me not to be indebted to the doctors who worked my case; it seemed a purely professional relationship. I signed the contracts, I was their guinea pig. Any time you turn over control of your existence to another, to a “team” of medical professionals, it is going to be a love-hate relationship. I had to trust them while I was an object of their study and experiment. Doctors thus seemed an anonymous “they,” an organism of eyes and hands, hidden behind clipboards, rarely looking up, rarely seeing me for who I was then. I was room 1106, a fifteen year-old Caucasian female, classified by specific protocols, outcomes, side effects. That’s also my impression of doctors since at the Hutch they made rounds as a group, with juniors trying to answer the senior’s questions, kissing up, rolling their eyes, looking efficacious, tired, confused, bored, snide. Some of them seemed more interested in the posters on the wall, my books and toys, than what was happening to me. When they arrived, I was expected to be lying patiently in bed, in case they wanted to pull back the sheets, get on with business, before the next and the next.
While the doctors were nameless, Juanita seemed haloed; it is hard not to depict her as a saint. The nurses who worked on the bone marrow transplant unit served people whose lives were daily at risk, who did not enjoy great hope for the future, who were lost or losing causes. Yet the nurses never treated us like that. It was clear to me from conversations with several of them in addition to Juanita that this was their vocation. They organized most of their lives around patients, working three or four days of twelve hour shifts then having a few days off, to regain strength and equanimity. Juanita herself talked about all the staff she had seen “burn out”-—leaving nursing altogether or transferring to happier situations, maternity or pediatrics, because bone marrow transplant was so “intense.” The nurses on 11 SW stepped in where only a mother might tread. They double-checked doctors’ orders, administered medicines, noticed tiny changes, delivered information, joked and entertained, cheered, performed medical procedures, served food, cleaned up vomit, delivered towels, gave massages, emptied catheter bags. It is hard for me to imagine how anyone could manage this with a smile on her face, rather than an overwhelming sense of exhaustion and despair. Juanita cared for me and another patient while getting a Master’s degree in nursing and looking after her husband and pet pot-bellied pig. When the team of doctors came in for their daily verbalization, Juanita would often be pushed to the back of the room. There she didn’t glare or fume, but smiled until my eyes met hers, and we laughed silently together until the doctors shuffled to the next room.
For my sixteenth birthday on May 6, 1986, I got my urinary catheter removed and a day of rest—following the two days of Cytoxan but before six days of total body irradiation. For some reason, I always associated turning sixteen with sock hops and poodle skirts, an impression perhaps from watching too much “Happy Days.” But the dream didn’t come true. I wore my usual open-backed hospital classic. My mom and sister brought me a piece of carrot cake from a shop called the “Little Biscuit” which I worshipped because it was the first fancy food store I had ever seen. (In Auburn, Mom shopped at Price Chopper.) I ate one bite and vomited. Much to my disappointment, the one bite wasn’t even good—not because of any intrinsic failure of the cake, but because the chemo had affected my ability to taste. This defect would get much worse as a consequence of the radiation. For my sixteenth birthday, I also took my first shower in three days. I washed my wispy bits of hair. Ann, who in a week would give me bone marrow, made a sign in colored marker which said, “We Love You, Kathy.” She hung it up on the only point I focused on besides my mother and sister: the TV. Besides the bone marrow, this sign was the best gift I’ve ever gotten. Awakened at 3 am by a night nurse fresh from the set of “Childkiller III,” I would stare up at that bit of crayon, thinking how much my family loved me. That piece of evidence, of hope and faith, sustained me during the long nights alone—when the familiar faces were gone, and I was left in a room now seeming strange, a body now aged, an ordeal just barely begun.
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. Okay, it was not magic, it was agony; movement of any sort made my stomach crash like the sea. And people did see me, after a week of being hidden in my sterile room. I had to don a mask to keep out germs as I was wheeled from Swedish 11 SW 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 chicken breast 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 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. When I taught dance with Libby in high school gymnasiums, we drilled routines to any pop hit of the moment. In ballet class, we danced only to classical, but I was really ignorant of both kinds of music. “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. First, 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—not Juanita—came to say my hair was a “sanitary concern”: in other words, it needed to go. I’m sure this was not the entire reason they wanted to chop my remaining hair off; after measuring my urine and scooping my puke, how could vacuuming a few hairs hurt? From hints received from nurses, I deduced this was the handiwork of another mental health expert, the theory being that losing one’s hair, ala Samson, reinforced impotence and powerlessness, but cutting one’s hair was a move of decisiveness and strength. It announced, “I am in control of this cancer,” not the other way around. Whatever. Anybody who has been locked in a room filled with radiation for one’s own good knows she is not “in control” of her existence. There are only so many choices a dying person can make. Nonetheless, I went along, acknowledging that lacking a better pastime, watching my hair fall out was not particularly good for me.
So that night, after my mother and sister left for “home,” a nurse arrived in my room with her sacrificial implements—a 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 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. Again I wondered what part of God’s plan dictated that the worst horrors are always visited upon you at 3 am. Research confirms that at 3 am, God, if not dead, at least takes a nap. In the morning, I saw my mouth in the mirror, red and raw with sores. The damaged tissue of my throat produced a thick, sticky mucous that prevented me from swallowing easily. Juanita, apprised of any change in my condition, showed me how to rinse my mouth with saline to keep the sores clean and lubricated. She also hooked up a suction tube with a long thin wand to one of the many nozzles behind my bed. This, she said, would help a lot. If I started to gag, I was to stick this wand down my throat and suck up the offending mucous. Wait a minute, I thought. I would much rather choke on my own secretions than stick a tube down my throat. I nodded reassuringly to Juanita when she asked if I understood. Secretly I vowed never to touch the thing. Death be not proud!
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.
On morphine, I felt like a child learning to ride a bicycle without training wheels; I moved one foot after another, and the world around me bumped and jiggled, circled maddeningly. The nausea which I continued to suffer harkens to another image of transport: digestive mutiny. My stomach, chief agitator, kept trying to leap overboard to freedom, into the pitching sea. In the meantime, I received hyperalimentation or “tube food” through my chest catheter. Juanita nonetheless encouraged me to eat a little everyday so my stomach would not forget its digestive responsibilities. This proved difficult for reasons besides the nausea and throat pain. First, I was never hungry or thirsty; I had entered a new realm, shorn of natural functions and desires. Secondly, I had lost my ability to taste. The radiation affected the entire digestive tract, from the bottom of my stomach to the tip of my tongue. Lemonade and milk tasted alike; so too, apples and pears. Biting and chewing reduced all foods to textures with the flavor of my wounded mouth. (The rude awakening occurred when I swallowed a large spoonful of warm applesauce; it didn’t make it down.) This was another shocking side effect because no one mentioned it in advance. It was indeed a minor detail, but a sad one. I felt like a cyborg trying to ape the behavior of human beings. I remembered pleasure; would it still be there when I returned from my estrangement?
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.