The Undying

by Anne Boyer

  “Fuck cancer”9 is always the wrong slogan if for no other reason than that the cancer is your own body growing inside you, but also because “cancer” is a historically specific, socially constructed imprecision and not an empirically established monolith. This whole time I’ve been writing about cancer, I’ve been writing about something that scientists agree doesn’t quite exist, at least not as one unified thing. Fuck white supremacist capitalist patriarchy’s ruinous carcinogenosphere would be a lot better, but it is a difficult slogan to fit on a hat. The world is guaranteed to change, as everything does, but the sickness inside you could last forever, becoming more of itself while you become less. But if you begin to accept your illness, or even to love it, you worry that you might want to keep it around. You think, when you feel bad, that you will never long for it, but in truth you do, since it provides such clear instruction for existing, brings with it the sharpened optics of life without futurity, the purity of the double vision of any life lived on the line.

  3.

  In the cancer pavilion, disobedience is dangerous, but so is going along. A patient must adopt a discipline of following instruction in order not to mess up the whole careful process, but doctors can be tired, imprecise, or even prejudiced and incorrigible. Nurses are mostly geniuses, but it feels dangerous to be obedient to doctors, some of whom don’t seem to know what they are doing. They grow attached to you and think they know best, or sometimes act petty and vengeful when you ask them a challenging question. If you were ever a rebellious teenager, it becomes too easy to mistake one for a dad.

  I begin to think that I have to leave my first oncologist—the one we call Dr. Baby—because, despite its being the standard of care, the treatment he is giving me doesn’t seem to work. I bring in studies, I bring in friends, I bring in arguments, I lose sleep. He is good at his job. He makes phone calls, he casts doubt on studies, he brings his best arguments, he tries to persuade my friends. I feel like I am fighting for my life against a putto—a decorative Renaissance cherub. My friends don’t know who to believe about this question of my treatment: me, the chemo-damaged dérangée spending drug-hazed nights on PubMed, or Dr. Baby, a bald, middle-aged man who wears slip-on clogs because, as he tells us, it takes too much energy to tie shoelaces. Dr. Baby and I quarrel about treatment, but he also explains that he owns a pair of loafers he could wear but that it is too much effort to reach to the top of his closet to get them. The friend who accompanied me to that particular exam said that Dr. Baby on shoes is irrefutable evidence that life is governed by a chance machine.

  I like Dr. Baby, of course, and am certain that Dr. Baby cares about me, but not enough to be brave in the way I need him to be. Dr. Baby is making the decisions he believes are best for me, saying that a more aggressive treatment holds too great a risk for a younger patient because of its debilitating future effects. I tell him that to not offer the most aggressive treatment is too great a risk for a young patient because the survival numbers for the standard-of-care treatment are not acceptable. I do not want to die, I tell him. I still have a lot left to do. It is precisely because I still need time, I plead, that I will do anything to live.

  My friend Cara has my back. She narrows her eyes and asks him: “What’s the worst that can happen?”

  Dr. Baby, after listing the disabling long-term side effects, says to Cara, “She could die.” Then he says, distraught enough that we believe him, “I’ve seen people die of chemotherapy.” Oncologists, too, fear oncology.

  I go to another oncologist for a second opinion. She is a specialist in my cancer. It has been suggested to me that the regimen she prescribes for her patients, in furtherance of her research, is unusually aggressive and controversial. I don’t care because I want to live. Dr. Baby appears upset after I make an appointment with her, and after that, he goes from someone who used to call me just to see how I was feeling to someone who won’t talk to me even as we sit in the same room. The new oncologist says, upon hearing the facts of my triple negative’s specific subtype, that I am correct, that I have read the studies correctly, that the treatment I am asking for is indeed the one she believes will work. I become her patient.

  She is correct and I am correct, but Dr. Baby is also correct. The new treatment is disabling, not just during, but for years after. Even by the extreme standards of chemotherapy, it feels like too much. This new oncologist can barely remember my name, has none of Dr. Baby’s befuddled charm or intensity of feeling. But within days of the first infusion of the drug combination I was sure I needed, the tumor, which had been a nagging, terrifying, unshrinking pain in my breast for the duration of chemotherapy, finally ceases to hurt.

  Someone once said that choosing chemotherapy is like choosing to jump off a building when someone is holding a gun to your head. You jump out of fear of death, or at least a fear of the painful and ugly version of death that is cancer, or you jump from a desire to live, even if that life will be for the rest of its duration a painful one.

  There is a choice, of course, and you make it, but the choice never really feels like yours. You comply out of a fear of disappointing others, a fear of being seen as deserving of your suffering, a hope that you could again feel healthy, a fear that you will be blamed for your own dying, a hope that you can put it all behind you, a fear of being named as the person who cannot cheerfully submit to every form of self-preservative self-destruction written in the popular instructions. You comply from ritual obedience, as when the teacher hands out exams, or the bailiff says “All rise,” or the minister entreats a prayer, or the cops shout “Move along.” You comply from hope that obedience now will result in years in which you can disobey later. You comply because the only other option might be to drink carrot juice and die of your own cellular proliferation, refusing to admit your own mortal vulnerabilities, pinning heartbreaking notes about spontaneous remission around your room.

  You must have a desire to live, but it is also necessary to believe that you are a person worth keeping alive. Cancer requires painful, expensive, environmentally harmful, extractive medicine. My desire to survive means I still can’t bring myself to unravel survival’s ethics. One of the chemotherapy drugs with which I was treated, cyclophosphamide, passes into the urine only partially diluted, is only partially removed by water treatment methods, and lasts in the common water supply for four hundred to eight hundred days.10 Another, carboplatin, is described in its manufacturer’s information sheet as having the “environmental fate” of accumulating in aquatic environments, where it lingers but no one yet knows what damage it does. The Himalayan yew tree, from which one of my chemotherapy drugs is harvested, has been endangered since 2011.11 Cancer spending was $130 billion in 2017, greater than the GDP of more than a hundred countries.12 The cost of one chemotherapy infusion was more money than I had then earned in any year of my life.

  My problem is that I wanted to live millions of dollars’ worth but could never then or now answer why I deserved the extravagance of this existence, why I consented to allow the marketplace to use as its bounty all of my profitable troubles. How many books, to pay back the world for my still existing, would I have to write?

  And after treatment, when my body was wrecked, when my body was like a car with parts that kept falling off, when I failed at, as U.S. disability law calls it, “basic activities of daily living,” I wondered how all those dollars had passed through my body and I was still left in such bad shape. If I calculated the cost of each breath I took after this cancer, I should breathe out stock options. My life was a luxury good, but I was corroded, I was mutilated, I was uncertain. I was not okay.

  THE SICKBED

  Miserable and (though common to all) inhuman posture where I must practice my lying in the grave by lying still and not practice my resurrection by rising any more!

  —JOHN DONNE, Devotions upon Emergent Occasions, 1623

  1.

  Sometimes the thought of dying young is more than the punk romance of a person who can’t handle an ima
gined getting old. Once we were teenagers, expecting to die by twenty-eight, and if that didn’t work, by forty. Then forty came, its most discernible loss that of any desire for dying early, live-fast-die-young the refrain of those who didn’t understand a person could mess around with living fast and also slow down as necessary later, could die old and interesting and with each other.

  Before you have a chance to cancel the invitation, though, what you only kind of desired in the first place shows up, offers you the preservative honor of dying fuckable in that famous way that people think they love. You could, as a guy in a band once advised you, always leave them wanting. You could die before almost anyone you loved did, could be spared grief, global warming, and the collapse of Social Security.

  Biography in that case becomes a logic a person can no longer recognize of a form of being that can’t exist. It’s iconography, not biography, that would offer the Hail Mary radiance of what it meant to have lived, the newly arrived guest of maybe-dying-early leaning over to whisper in your ear a flattery about hagiography, too, something about how to check out now would make you static, enduring, and inculpable. You could die, if not saintly, at least without the burden of further moral error.

  But dead women can’t write. And as John Donne wrote in his poem “The Blossom,” meaning something else, “A naked thinking heart, that makes no show, / Is to a woman”—by which I mean me—“but a kind of ghost.”1

  Once my hair is gone, once I can no longer taste my food, once I have passed out while shopping for a bread knife in IKEA, once the ex-lovers have all visited to make one last attempt to get me in bed, once the generous humiliations of crowd-sourced charity have assured me months of organic produce, I have become a patient. The old ways are through. Any horizon is made of medicine. Any markers of specific identity beyond “the sick” and “the healthy” become from another era. Cancer mediates all.

  Every movie I watch now is a movie about an entire cast of people who seem to not have cancer, or at least this is, to me, its plot. Any crowd not in the clinic is a crowd that feels curated by alienation, all the people everywhere looking robust and eyelashed and as if they have appetites for dinner and solid plans for retirement. I am marked by cancer, and I can’t quite remember what the markers are that mark us as who we are when we are not being marked by something else.

  Yet I know I existed before I was ill. I kept journals, so have proof. On the first day of 2014, the year in which I will fall ill, I am forty years old, work for a living teaching art students, and have a daughter in eighth grade. We live in a two-bedroom apartment in suburban Kansas City for which I pay around $850 a month. According to my journals, where I dutifully record each day’s mundane details, I am wearing an oversized moth-eaten red cashmere sweater that I bought from the Salvation Army, and I seem to have a slight cold. I write that I am optimistic about starting out the new year with a virus. It is as if the old year is being burned out of me through fever and the new one will come in renewed because any illness that doesn’t kill you sets you on fire and then you start over, just like that. I am awaiting the next day’s delivery of a vintage Queen Anne–style four-poster bed I bought for $280 at a consignment shop. Twenty-six weeks into owning it, the week after my forty-first birthday, it becomes my sickbed—the most tragic piece of furniture I will ever own.

  There is no more tragic piece of furniture than a bed, how it falls so quickly from the place we make love to the place we might die in. It is tragic, too, for how it falls so quickly from the place where we sleep to the place where we think ourselves mad. The bed where anyone makes love is also—and too clearly for anyone stuck there because of illness—the grave, as John Donne described it, from which they might never rise.

  In vertical life, when you are well or mostly and walking around, pretending to be, the top of your head is the space that the heavens touch. The total area of the top of you is pretty small. You are only moderately airy, then, and your eyes, rather than gazing up, gaze outward at the active world, and it is to this you are mostly reacting. And it is mostly during the night, during dreams, that imagining becomes temporarily expansive and the ceiling air spreads over you, or at least this was, in those days, one magic theory I conjured in bed to explain the relationship of posture to thought.

  When you are sick and horizontal, the sky or skyish air of what is above you spreads all over your body, the increased area of airy intersection leads to a crisis of excessive imagining. All that horizontality invites a massive projecting of cognitive forms. When you are so often lying down, you are also so often looking up.

  A sick person in bed is the ward of love, if she is lucky, and the orphan of action, even if she is not. All the accumulated gorgeousness of life in bed can be eclipsed by gravity there, and dreams, too, become occluded by pain. Every pleasure of a bed can, during illness, disappear behind fresh architectures of worry.

  Harriet Martineau wrote in her 1844 book Life in the Sick-Room, “Nothing is more impossible to represent in words … than what it is to lie on the verge of life and watch, with nothing to do but to think, and learn from what we behold.”2

  Virginia Woolf’s mother, Julia Stephen, also wrote a treatise on sickrooms. In this 1883 work, she instructed caregivers that while the patient in a sickbed may appear to have “absurd” fancies, these are heightened perceptions of the real, a result of the “delicately organized” minds of the very ill, “whose senses have become so acute through suffering.”3

  In John Donne’s Devotions upon Emergent Occasions, there is a virtuosic enactment of this kind of heightening, an instruction manual from the platform of feeling like hell. Illness can bring thought to that newly exposed mega-cosmos of our senses. Donne wrote:

  “Man consists of more pieces, more parts, than the world; than the world doth, nay than the world is. And if those pieces were extended, and stretched out in man as they are in the world, man would be the giant, and the world the dwarf; the world but the map, and the man the world. If all the veins in our bodies were extended to rivers, and all the sinews to veins of mines, and all the muscles that lie upon one another, to hills, and all the bones to quarries of stones, and all the other pieces to the proportion of those which correspond to them in the world, the air would be too little for this orb of man to move in, the firmament would be but enough for this star; for, as the whole world hath nothing, to which something in man doth not answer, so hath man many pieces of which the whole world hath no representation.”4

  A well person’s astral projection remains mostly atmospheric, but the deeply ill person in pain, in order to escape it, can sprint away from the pain-husk of the failing body and think themselves into a range beyond range. When pain is so vast, it makes it hard to remember history or miles per hour, which should make the sickbed the incubator for almost all genius and nearly most revolution.

  Illness vivifies the magnitude of the body’s parts and systems. In the sickbed, the sick disassemble and this disassembly crowds a cosmos, organs and nerves and parts and aspects announcing themselves as unfurling particulars: a malfunctioning left tear duct—a new universe; a dying hair follicle—a solar system; that nerve ending in the fourth toe of the right foot—now eviscerating under chemotherapy drugs—a star about to collapse.

  All that time lying down can also bring about the microscopic practice of worry. In the sickbed, illness also illuminates smallness, shabbiness, self-absorption, inconsequence, personal finance, home economics, the social order. Virginia Woolf’s mother understood how the small was the great agonist to the ill: “Among the number of small evils which haunt illness, the greatest, in the misery which it can cause, though the smallest in size, is crumbs. The origin of most things has been decided on, but the origin of crumbs in bed has never excited sufficient attention among the scientific world.”5

  Being sick makes excessive space for thinking, and excessive thinking makes room for thoughts of death. But I was always starving for experience, not its cessation, and if the experience of
thought was the only experience my body could give me beyond the one of pain, opening myself to wild, deathly thinking had to be allowed. Don’t try to make me, I warned my friends in a set of emailed instructions, stop thinking about death.

  In 1621, two years before the December that John Donne fell ill and wrote his sickbed masterpiece, an anonymous Flemish painter painted his or her own. Young Woman on Her Death Bed is rare in the tradition of European sickbed paintings in that it is, like actually dying young, actually terrifying. The young woman’s skin is waxen, her eyes unfocused, her posture cramped and scared, her hands inert and curled like claws. Her surroundings are fine—smooth linens and velvets, coordinated wallpaper, too—but all the comfort in the world cannot be a comfort in the face of that.

  The death of Cleopatra is a better look. She died, according to Wikipedia, on “August 12, aged thirty-nine years, wearing her most beautiful garments, her body arrayed on a golden couch and the emblems of royalty in her hands.” In the paintings, Cleopatra is almost always draped over a bed or chaise as if waiting for a lover. Her breast—usually the left one—is exposed, troubled by a slender asp her own hand has guided voluptuously toward her nipple. In Greek tragedy, too, women died only where they slept, made love, and gave birth. As the classicist Nicole Loraux writes about women’s tragic deaths, “Even when a woman kills herself like a man, she nevertheless dies in her bed, like a woman.”6