The Undying

by Anne Boyer

  In 2014, the year I was diagnosed, there were an estimated 3,327,552 people with breast cancer in the United States. In 2019, the year I am finishing this book, an estimated 271,270 people will be newly diagnosed with breast cancer, and 42,260 will die of it. In the United States, breast cancer death rates slowly increased every year until 1975, held steady until 1989, and then began to decrease after that, except in the case of patients younger than fifty, whose death rates have been relatively level since 2007.

  Who dies from the collection of diseases called “breast cancer” is influenced by income, education, gender, family status, access to health care, race, and age. Black women have both a lower rate of being diagnosed with breast cancer and a higher rate of mortality from it. Unmarried women have a greater risk of dying from their breast cancer, too, and of not receiving adequate care for it. Breast cancer patients who live in poor neighborhoods have a lower survival rate at every stage of diagnosis. Unmarried breast cancer patients who live in poor neighborhoods have the lowest survival rate of all. Some people with breast cancer, like those who are transgender or people who are single parents, at the writing of this book haven’t yet made it into their own epidemiological category.

  These are statistics, but they are not always truths. It is, in fact, difficult to get any sense of the scope of breast cancer or the accuracy of the available numbers. This is not only because there are sometimes profit and public relations motives behind epidemiological accounts of breast cancer—for example, breast cancer charities sometimes present the numbers as telling an optimistic story of medical progress—but because surveillance technologies have increasingly uncovered physiological occurrences that have been understood to be breast cancer when they weren’t. There is no way of knowing how many people have been led to believe they had breast cancer when they instead had benign conditions that were no threat to their lives. The good news is that researchers and oncology practitioners have begun in the past few years to seriously address the problem of breast cancer overdiagnosis and overtreatment and the disabling effect it has on people’s lives.

  People diagnosed with DCIS—a condition some call “Stage 0” breast cancer, with which an estimated 63,960 people were diagnosed in 2018—frequently report that their doctors told them that their breasts were “ticking time bombs.” Some with DCIS have opted for mastectomy or other forms of aggressive, expensive treatment. The problem is that people with DCIS appear to have no greater chance of breast cancer than those without it. People’s bodies are made of cells, not time bombs, but there is no billion-dollar industry devoted to reminding us of that.

  In October 2016, a study published in the New England Journal of Medicine confirmed earlier research about breast cancer overtreatment and led the Los Angeles Times to declare that the majority of women diagnosed with breast cancer via mammography received unnecessary treatment. Early detection did not, as the saying went, save lives, but instead, damaged them, costing billions of dollars and resulting in life-altering effects. As the UCLA breast cancer specialist Dr. Patricia Ganz is quoted as saying, “If we just keep doing what we’ve been doing, we’re exposing lots of people to treatment they don’t need or can’t afford.”21

  Millions of people have breast cancer, except when they don’t; many others think they are survivors of the disease despite research now designating them victims of medical surveillance, instead; lack of access to treatment harms, access to treatment harms; surveillance harms, lack of surveillance harms; researchers fake cures, patients fake cancer, and doctors do, too. “What If,” a Mother Jones headline asks about the crisis, “Everything Your Doctors Told You About Breast Cancer Was Wrong?”22

  The novelist Kathy Acker’s breast cancer most likely couldn’t have been cured by chemotherapy, but she had no way of knowing this when she refused chemotherapy in 1996. Or at least she had no rational way to know this. She did, however, appear to have another way to know it. “I live as I believe,” wrote Acker in “The Gift of Disease,” “that belief is equal to the body.”23

  Some of her friends, however—despite lack of evidence—seem certain that her decision to forgo chemotherapy was the cause of her death. That Acker “wanted” to die or somehow brought about her own death is one of the many durable untruths in circulation about breast cancer. Sarah Schulman, in her book The Gentrification of the Mind, writes that Acker died of “bad treatment decisions regarding her breast cancer.”24 In an account of Acker’s death published in Hazlitt magazine, Ira Silverberg claimed it was “certain she wanted to die” and that “it was her exit strategy.”25

  Acker did not merely, as was written in the Financial Times, “refuse chemotherapy because her alternative healers assured her the cancer was gone.”26 She refused chemotherapy for a complex set of reasons, including fear of chemotherapy, cost of treatment, and her doctor’s statement that chemotherapy would only raise her chance of recurrence 20 percent. Had Acker agreed to one of the regimens of chemotherapy available in 1996, it would have almost certainly meant the last months of her life would have been spent with some variation of the following: dry itchy eyes, skin lesions, anal lesions, mouth lesions, a bloody nose, wasted muscles, dying nerves, rotting teeth, no hair or immune system, too brain-damaged to write, throwing up, losing her memory, losing her vocabulary, and severely fatigued. These are the most common side effects, but there are others, too, including blood clots, heart failure, and chemotherapy-induced leukemia—and still more, like a risk of deadly pneumonia and hospital-borne infections. Acker would have most likely endured some or all of this while also enduring the cascading physical symptoms of her cancer itself.

  Given that her cancer metastasized quickly to her liver and lungs, and that her doctor did not offer her the option of tamoxifen, which was available at the time, it is probably safe to conclude that Acker’s cancer was hormone-receptor-negative, either what we now call triple negative, or what had a more severe prognosis at the time, hormone-receptor-negative breast cancer with Her2 sensitivity. Using the survival rates provided to her by her physician along with her own description of her diagnosis, I entered her disease’s statistics into LifeMath, the prognosis database, which I used to make decisions about the treatment of my own. A cancer like Acker’s, one that killed her in eighteen months, had a similar two-year death rate whether or not a patient underwent chemotherapy. According to the results, five people out of one hundred with this type of cancer will die within two years with chemotherapy; around the same number would die without. Some studies have suggested that an initial round of chemotherapy can speed up aggressive cancers like hers, introducing the possibility that any treatment might have even hastened death. There wasn’t a cure then. There isn’t one now. In making a principled judgment to live according to her values, Acker did the best anyone could do.

  Maybe medical historians will view chemotherapy with the same perplexed curiosity that ours do formerly common medical practices such as bloodletting—that not only did we severely poison people in attempts to make them well, but that even in those instances when chemotherapy doesn’t and won’t work and results in death, damage, and disability, there remains a popular desire for breast cancer patients to undergo it. When it isn’t motivated by profit, this overtreatment seems to result from superstition rather than science, and the irrational desire for chemotherapy isn’t just aroused in the loved ones of a cancer patient, as it was in Acker’s case. It sometimes occurs in cancer patients themselves. There are patients who, out of fear, convention, misinformation, or social pressure, undergo chemotherapy even in circumstances where it has no particular medical use and no science to support it. It is as if the world itself is captivated by the unholy rites of the infusion room and the sentimental dramas of lost hair, wasting limbs, weakened women. Chemotherapy’s cultural spell is so strong that people without cancer sometimes see patients deciding to forgo it as an excuse to abandon the sick. “I lost a lot of friends,” Acker said, who “couldn’t bear to watch.”27

  In
stead of opting for the painful death that she was offered by the available medicine, what Kathy Acker did was what she said she wanted to do with the remainder of her life after diagnosis: Live. Refusal can be isolating; the social enforcement of medical compliance around a gendered disease like breast cancer, brutal. As Acker wrote: “Many of my friends phoned me, crying and yelling at me for not undergoing chemotherapy.”28 But despite how everything in the world seems set up to kill a woman before she is actually dead, Kathy Acker chose not to. She waited to die until her end was irrefutable, and even then, according to accounts of her friends, tried, at least for good measure, to refute it.29 Breast cancer killed Kathy Acker. Kathy Acker did not kill Kathy Acker.

  Cancer kills people, as does treatment, as does lack of treatment, and what anyone believes or feels has nothing to do with it. I could hold every right idea, exhibit every virtue, do every good deed, and follow every institutional command and still die of breast cancer, or I could believe and do every wrong thing and still live.

  Dying of breast cancer is not evidence of the weakness or moral failure of the dead. The moral failure of breast cancer is not in the people who die: it is in the world that makes them sick, bankrupts them for a cure that also makes them sick, then, when the cure fails, blames them for their own deaths.

  As Coopdizzle, who was thirty-four when she died, has tagged in the corner of her posthumous YouTube video a warning: “Please do not say I lost my battle.”

  As Audre Lorde, who also refused chemotherapy for breast cancer, wrote ten years before Acker’s diagnosis:

  I warn myself, don’t even pretend not to say no, loudly and often, no matter how symbolically. Because the choices presented in our lives are never simple or fable-clear. Survival never presents itself as “do this particular thing precisely as directed and you will go on living. Don’t do that and no question about it you will surely die.” Despite what the doctor said, it just doesn’t happen that way.30

  4.

  Now that I am undying, the world is full of possibility. I could write a book in which nothing is left out, or write a work of undying literature in which everything that is missing shows up as the shadow of its own shape, or one where nothing could be displayed except as its consequence. Nothing would be missing from this book where nothing is not permitted: not the material world nor all of its semi-material relations. We do not often know the source of the things of the world and so are mostly left to imagine their lineage. We are abandoned by cause, left to guess at the effect, and in our guesses, we are abandoned by truth, left only to error, permitted metaphysics but never really wanting them in the first place.

  Karl Marx wrote, “All that is solid melts into air,” which is true, as it is also true that all that is air becomes, under a later version of those same conditions, too polluted to breathe. We imagine that this air could fall on us as rain, and that as it is also in us, it falls away from us as tears and sweat and urine. Respiration is a refeeding of what is abstract into what is so tangible it changes our form, at least slightly. Then it dissipates, again, we never know as what. As one of the undying I will now try to conjure up not the undying soul but instead an undying substance, reground the atmospheric as new evidence.

  The same technologies of thought that humans once used to understand our souls are now what it takes to understand a Baby Shrek figurine from the dollar store. The human world has never required an instrument so vast.

  IN THE TEMPLE OF GIULIETTA MASINA’S TEARS

  Also, while the said creature was occupied with the writing of this treatise, she had many holy tears and much weeping, and often there came a flame of fire about her breast, very hot and delectable …

  —The Book of Margery Kempe, 1501

  1.

  Before I got sick, I’d been making plans for a place for public weeping, hoping to install in major cities an almost-religious monument where anyone who needed it could get together to cry in good company and with the proper equipment. It would be like God’s Tabernacle in Exodus, a precisely imagined architecture of shared sadness: gargoyles made of night sweat, moldings made of longest minutes, support beams made of I-can’t-go-on-I-must-go-on. I would call this The Temple of Giulietta Masina’s Tears after the Italian actress who plays Cabiria, an aging sex worker in the Fellini film who cries while swept into a parade of young people after her false-true love, Giorgio, tries to push her off a cliff and steal her money. The walls of the temple would have a projection of Masina as Cabiria weeping while almost smiling; there’d be a looped soundtrack of Judy Garland’s voice breaking on that mournful outtake of “Over the Rainbow.” When planning the temple, I remembered the existence of the people who have hated those they call crybabies, how they might respond with rage to a public place in which crying strangers gathered en masse to cry about whatever they liked. Foreclosing this potential danger was part of the formal problem: how to make a space for the physical expression of both singular and common sorrow, a place that both comfortably exposed suffering as what is shared and that guaranteed some protection against anti-sadness reactionaries. It would have been something tremendous to trick those who would freely inflict extra pain on people already in pain into their own private-hell chambers, and at the same time to offer pain’s sufferers the exquisite comforts of stately public marble troughs in which to collectivize their tears. But I never did this. Later, when I was sick, I was on a chemotherapy drug with a side effect of endless crying, tears dripping without agency from my eyes no matter what I was feeling or where I was. I called this the season of Cartesian weeping—the months my body’s sadness disregarded my mind’s attempts to convince me I was okay—and I cried every minute, whether I was sad or not, my self a mobile, embarrassed public monument of tears. I didn’t need to build the temple for weeping, then, having been one. I’ve just always hated it when anyone suffers alone.

  2.

  As if pain were the opposite of beauty, I walked through the decorative-arts wings of a museum taking notes on how to turn the cancer pavilion’s IV poles into beaux arts chandeliers, how chemo bags could look like kaleidoscopic Grecian urns, how the endless feelings-less weeping of a chemotherapy patient could be done in the service of ornate lacrimal vessels and poisonous irrigation schemes.

  This is a treatise on pain made of notes and starts: ephemeral sensation’s monument of an ephemeralist’s half-literature. I’ve been keeping a list of subtitles for it, such as: mutilated body as ecopoetic, unbearable pain as Kantian critique, dolor plastico, eros-absentia, pain’s paradoxical democracy, a formal feeling sums, every pietà a mastectomy scar, bionegated social unremittingest, etiological epithetics, oncosurrealism, suture as epic theory, the somapathetic fallacy of spring—

  from Zoonomia, or the Laws of Organic Life, 1794: “compassion is the pain we experience at the sight of misery”

  from my journals: “unwaning woe”

  from Twitter: “can you imagine an essay with the motion of ruins?”

  from Alphonse Daudet’s In the Land of Pain, 1888: “Pain, you must be everything for me. Let me find in you all those foreign lands you will not let me visit. Be my philosophy, be my science.”

  I wanted to write about pain without any philosophy. I wanted to describe an education in pain and that education’s political uses. But in literature, pain mostly excludes literature. And in the available politics, pain is often just what moves us to plead for its end.

  True/False:

  1. In philosophy, pain is a feather plucked from its bird.

  2. In literature, pain is an index separated from its book.

  3. In movies, pain is a tree, but never its ax.

  There’s a rumor that any consideration of pain nests under phenomenology, but phenomenology mostly stops at a modest sliver of available pain and declares it a universal whole. “My body” gets turned into “the body” there. Emotional pain overruns the physical, as if it isn’t actually the other way around, as if it isn’t pain in our bodies or its absence determining
what kind of day or hour or minute we have, whether or how we work, whether or how we breathe or sleep or love. Then the already apparently abstract goes floating away into further abstraction, like a dust particle submitted to a discourse made of dust.

  To be a minor person in great pain at this point in history is to be a person who feels inside their body when most people just want to look.

  There’s expository pain like an X-ray machine, illuminating the difficult mysteries of the interior. There’s the pain that becomes metaphor and there’s the pain that’s read as if it’s the canon. Then there’s trash pain—the libertine pain of malingering, which is more like a texture than an image. Then there’s the epic pain of a cure.

  If this were a work of philosophy, I would argue that the spectacle of pain is what keeps us from understanding it, that what we see of pain is inadequate to what we can know, that a problem with understanding pain at this point in history is the generalizing effect and market saturation of vision, but I am 1) not a philosopher and 2) don’t really know.

  My pain’s naked grammar was:

  how doe sone go on like htis the days gone finally in a way that can’t be though I have a light on my face to hceer me and I took an advicl will take more take vitamin d fake every sunlight the world on fire last night while I slept in such rgitheous pain

  True/False:

  1. As pain incapacitates a person, it also incapacitates the dictionary.