Pull your hair out by the handfuls in socially distressing locations: Sephora, family court, Bank of America, in whatever location where you do your paid work, while in conversation with the landlord, at Leavenworth prison, however in the gaze of men. Negotiate for what you need because you will need it now more than ever. If these negotiations fail, yank your hair out of your head in front of who would deny you, leave clumps of your hair in the woods, on the prairies, in QuikTrip parking lots, in front of every bar at which your conventionally feminine appearance earned you and your friends pitchers of domestic beer.
Put your head out the window of the car and let the wind blow the hair off your head. Let your friends harvest locks of your hair to give to other friends to leave in socially distressing locations: to scatter at ports, at national monuments, inside the architecture built to make ordinary people feel small and stupid, to throw against harassers on the streets.
Pull your pubic hair out in clumps from the root and send it in unmarked envelopes to technocrats. Leave your armpit hair at the Superfund site you once lived near, your nose hairs for any human resources officer who denies you leave.
When your eyelashes fall out, send them as a reverse wish to every person who has, at your illness, disappeared. Your hair will fall out onto every surface you come near: it will fall into new alphabets and new words. Read these words to discover the etiology of your illness: If you are lucky you will read another word that means “illness has turned you into an armament.” In the bald spots, you will read how to weaponize your dying cells against what you hate and what hates you.
As you see a weapon in your falling hair, also you will see your body as it falls is a weapon, also as it doesn’t fall. In this new theory of being a sick person your friend will say that caring for you is now to care for arms. You have turned your room into an armory. Everyone who brings you water or food is also now loading a gun.
The cancer pavilion is a cruel democracy of appearance: the same bald head, the same devastated complexion, the same steroid-swollen face, the same plastic chemotherapy port visible as a lump under the skin. The old seem infantile, the young act senile, the middle-aged find all that is middle-aged about them disappears.
The boundaries of our bodies break. Everything we were supposed to keep inside of us now seems to fall out. Blood from chemotherapy-induced nosebleeds drips on the sheets, the paperwork, the CVS receipts, the library books. We can’t stop crying. We emit foul odors. We throw up.
We have poisonous vaginas and poisoned sperm. Our urine is so toxic that the signs in the bathroom instruct patients to flush twice. We do not look like people: we look like people with cancer. We resemble a disease before we resemble ourselves.
Language is no longer compliant to its social function. If we use words it is to approach as a misplaced bomb. Someone mentions something about the weather: in response, an errant phrase from a phantom conversation: “We must learn to accept what we want.” Sentences hold out against syntax. Vocabularies re-form into awkward translations of words we once knew or new words we never will. Children who were once taught to speak by their mothers now stare at their sick mothers, who are gesturing like babies learning to talk, unable to recall the word for “television” or the word for “cup.”
In the waiting rooms, the labor of care meets the labor of data. Wives fill out their husbands’ forms. Mothers fill out their children’s. Sick women fill out their own.
I am sick and a woman. I write my own name. I am handed at each appointment a printout from the general database that I am told to amend or approve. The databases would be empty without us.
Receptionists distribute forms, print the bracelets to be read later by scanners held in the hands of other women. The nursing assistants stand in a doorway from which they never quite emerge. They hold these doors open with their bodies and call out patients’ names. These women are the paraprofessionals in the thresholds, weighing the bodies of patients on digital scales, taking measurements of vital signs in the staging area of a clinic’s open crannies. Then they lead the patient (me) to an examining room and log into the system. They enter the numbers my body generates when offered to machines: how hot or cold I am, the rate at which my heart is beating. Then they ask the question: Rate your pain on a scale of one to ten? I try to answer, but the correct answer is always anumerical. Sensation is the enemy of quantification. There is no machine, yet, to which a nervous system can submit sensation to be transformed into a sufficiently descriptive measurement.
Contemporary medicine hyper-responds to the body’s unruly event of illness by transmuting it into data. Patients become information not merely via the quantities of whatever emerges from or passes through their discrete bodies, the bodies and sensations of entire populations become the math of likelihood (of falling ill or staying well, of living or dying, of healing or suffering) upon which treatment is based. The bodies of all people are subject to these calculations, but it is women, most often, who do the preliminary work of relocating the nebulousness and uncountablity of illness into medicine’s technologized math.
A pavilion is a…temporary and luxurious architecture erected for the purposes of the powerful, adjacent to something else.
What is your name and birth date? A cancer patient’s name, stated by herself, is adjunct to the bar code of her wristband, then the adjunct of whatever substances — vials of drawn blood, the chemotherapy drugs to be infused into her — whose location and identity must be confirmed. Though my bracelet had been scanned for my identity, requiring me to repeat my name is medical information’s backup plan: it is the punctum of every transmission of something to or from my body. I might sometimes remember who I am. But repetition is a method of desensitization. To rate yourself on the scale of 1 to 10? In cancer’s medicalized abstraction, I became a barely, tertiary to the body’s sensations and medicine’s informatic systems.
The nurses meet me in the examining room after I have replaced my clothes with a gown. They log into the system. Sometimes my blood has been drawn, and I am allowed to look at a printed page of its ingredients. Each week the blood flows with more or less of one kind of cell or substance than it did the week before. These substances go up or down, determine treatment’s future measurement, duration. The nurses ask questions about my experience of my body. They enter the sensations I describe into a computer, clicking on symptoms that have long been given a category and a name and an insurance code.
The word “care” rarely calls to mind a keyboard. The work, often unwaged or poorly paid, of those who perform care (or what is sometimes called “reproductive labor” — reproducing oneself and others as living bodies each day, of feeding, cleaning, tending to, and so on) is what many understand to be that which is the least technological, the most affective and intuitive. “Care” is so often understood as a mode of feeling, neighboring, as it does, love. Care seems as removed from quantification as the cared-for person’s sensations of weakness or pain seem removed from statistics class. I care for you suggests a different mode of abstraction (that of feeling) than the measurement of the cell division rate of a tumor (that of pathological fact). But strange reversals reveal themselves during serious illness. Or rather, what appears to be reversal becomes clarification. Our once solid, unpredictable, sensing, spectacularly messy and animal bodies submit — imperfectly, but also intensively — to the abstracting conditions of medicine. Likewise, care becomes vivid and material.
The receptionists, nursing assistants, lab technicians, and nurses are not only required to enter the information of my body into the databases, they also have to care for me while doing so. In the hospital, my urine is measured and charted by the same person who comforts me with conversation. This is so that painful procedures will become less painful. The workers who check my name twice, scan my medical wristband, and perform a two-person dose-accuracy reinforcement system as they attach chemotherapy drugs to my chest port are the same workers who touch my arm gently when I appear afraid. The worker who draws blood tells a joke. The work of care and the work of data exist in a kind of paradoxical simultaneity: what both hold in common is that they are done so often by women, and like all that has historically been identified as women’s work, it is work that can go by unnoticed. It is often noted only when it is absent: a dirty house attracts more attention than a clean one. The background that appears effortless appears only with great effort: the work of care and the work of data are quiet, daily, persistent, and never done. A patient’s file is, like a lived-in home, the site of work that lasts the human eternal.
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During my treatment for cancer, most of these workers — the receptionists, paraprofessionals, and nurses — have been women. The doctors, who are sometimes women and sometimes men, meet with me at the point of my body’s peak quantification. They log into the system, but they type less or sometimes not at all. As their eyes pass over the screen that displays my body’s updated categories and quantities, I think of John Donne: “They have seen me and heard me, arraigned me in these fetters and received the evidence, I have cut up mine own anatomy, dissected myself and they are gone to read upon me.”
If it is the women who transmute bodies into data, it is the doctors who interpret the data. The other workers have extracted and labeled me: I have informaticized my own sensation. It is the doctors who read me — or rather, read what my body has become: a patient made of information, produced by the work of women.
In approximately sixty hours, and for the second time, Adriamycin will be infused into my body through a plastic port surgically implanted into my chest and connected to my jugular vein. Adriamycin is named for the Adriatic Sea, near which it was discovered. Its generic name is doxorubicin, a name derived from “ruby” because it is a brilliant and voluptuous red. I like to think of this poison as the ruby of the Adriatic, where I have never been but would like to go, but it is also called “the red devil” and sometimes it is called “the red death,” so maybe it should be called the satanic jewel of mortality on the shores of Venice, too.
In order to administer the medicine, the oncology nurse, after checking the prescription with a partner, must dress in an elaborate protective costume and slowly, personally, push the Adriamycin through the port in my chest. The medicine destroys tissue if it escapes the veins: it is sometimes considered too dangerous to everyone and everything else to administer by drip. It is rumored, if spilled, to melt the linoleum on a clinic floor. For several days after the drug is administered, my body’s fluids will be toxic to other people and corrosive to my body’s own tissues. Adriamycin is sometimes fatal to the heart, and has a lifetime limit, of which, by the end of this treatment, I will have reached half.
In the United States, Adriamycin was widely approved for use the year after I was born, 1974, and this means that, including the years spent testing it, its use in cancer patients is older than I am. This is probably the same treatment Susan Sontag was given before she wrote Illness as Metaphor, one of the first books someone mails to me when I fall ill. To endure Adriamycin feels like an ancient rite, performed across the decades and on the occasion of many types of cancers as a ritual induction whether a patient needs it or not. Because of how it kills off cells totally in a classic way — turning people bald, making them throw up — its consequences feel like the oncological definitive. Lots of people have cancers that leave few marks on their appearance, but a cancer victim — in the cinematic sense — is a person who has had this kind of chemotherapy. That my treatment begins with it is a clear sign of how little progress has been made.
Cancer patients are kept in maximum circulation at a maximum rate.
Treatment with Adriamycin can cause leukemia, heart failure, organ failure, and will almost certainly cause me infertility and infection. Because, like many chemotherapy drugs, Adriamycin is a generalist in its destructions, it is also toxic to the central nervous system, and my mitochondria will begin to react to it three hours after its administration. This will continue for up to twenty-seven hours, but the damage cascades beyond treatment, is often sustained for years. As I sit in the infusion chair, the white and gray matter of my brain will begin to diminish. There is no particular way to know how this will change me: the brain damage from chemotherapy is cumulative and unpredictable. Although the drug has been in use for half a century, because it does not cross the blood-brain barrier, doctors sometimes did not believe patients about its cognitive effects, or when they heard these, they sometimes minimized the patients’ complaints as other kinds of cancer-related unhappiness.
MRIs of others who have had this chemotherapy for breast cancer suggest damage to the visual cortex, “significantly reduced activation of the left middle dorsolateral prefrontal cortex and premotor cortex,” and “significantly reduced left caudal lateral prefrontal cortex activation, increased perseverative errors, and reduced processing speed.” Patients report that they lose the ability to read, to recall words, to speak fluently, to make decisions, and to remember. Some lose not just their short-term memories, but their episodic ones: that is, they lose memory of their lives.
These effects, of which my doctor informed me casually only as he was escorting me to my first infusion of chemotherapy, are said to be inevitable. Nothing can be done, Your Oncology Journey tells me, except to endure one’s brain-damaged life with “good humor.” The effects can last throughout treatment, or for one year, or grow worse in the years after treatment, last for ten years or more.
Sick people sit in waiting rooms, and if they recline, it is temporarily, and if they are too weak to sit, they sit despite this, their heads slumped against their necks. No matter how sick they are, the sick who are treated at the cancer pavilion do not spend most of their time there: they are sick at work and sick at home or sick at school or sick in the grocery store or sick in the DMV or sick in their automobiles or on buses. Some are wheeled in by their children or partners or volunteers or friends, then wheeled out again into cars taking them to apartments or houses, all of which, like cancer treatment, must be paid for.
The word “clinic” is derived from the Greek clīnicus, meaning “of or pertaining to a bed.” The word “pavilion,” on the other hand, is intended for an entirely different structure, suggestive of jousts and battlefields. A pavilion is a place for generals and kings, almost always temporary and luxurious architecture erected for the purposes of the powerful, adjacent to something else — in cancer’s case, adjacent to all the rest of what we call life.
The philosopher Michel Foucault wrote a famous book about the spatial arrangement of illness called The Birth of the Clinic, but I can’t find a book called The Birth of the Pavilion. It seems impossible that a cancer pavilion could have a mother. In the large and bustling space in which my cancer treatment is administered I have never seen a bed.
Activity inside the pavilion is transient, abstracted, impermanent, dislocated. The sick and the partners, children, parents, friends, and volunteers who care for them are kept in circulation from floor to floor, chair to chair. The doctors are assigned a rotation of offices and outposts, and in order to find out where yours is each day, you have to call ahead.
Cancer treatment appears organized for the maximum profit of someone — not the patients — which means cancer patients are kept in maximum circulation at a maximum rate. Foucault wrote, “The clinic should have had only one direction — from top to bottom, from constituted knowledge to ignorance.” The pavilion, on the other hand, is a tangle of directions. Money and mystification, not knowledge or ignorance, are its cardinal points.
Scientists discovered the drug known as the red devil near Castel del Monte, built by the Holy Roman Emperor Frederick II in Italy in the 1240s. The castle had neither a moat nor a drawbridge, so few believe it was ever used as a fortress. It never was completely finished, so some people think it was only used as a temporary lodge. The castle was built in a rare octagonal shape, and later it became a prison, then a refuge during the plague. Then the Bourbons stripped out its marble. Then the scientists harvested its dirt. Taking the castle soil back to Milan, they found Streptomyces peucetius, the bright red bacteria from which my treatment came. Adriamycin is an anthracycline, which means it blocks an enzyme called topoisomerase II. By blocking this enzyme, the drugs inhibit the rapid proliferation of cells — many of the cells we need, but ideally also the cells we don’t.
I was given the Adriamycin with cyclophosphamide, a drug approved for use in 1959, in a common treatment combination called dense-dose AC chemo. Cyclophosphamide is a medicalized form of a chemical weapon already developed by Bayer under the name LOST.
Mustard gas, as it is also known, has always done its worst as an incapacitant rather than a killer, but it can kill a person, too. During World War I, LOST filled the trenches with brilliant yellow plumes. During cancer, it comes in plastic pouches, and no one in the pavilion speaks frankly about what it is. Outlawed as a weapon in 1925, it is a form of slow obliteration that lives on only in chemotherapy and, after that, as its own consequences: infection, infertility, cancer, cognitive loss. In chemotherapy, as in war, when you are being exposed to cyclophosphamide, it is advisable that you have someone to hold your hand.
Although four dense-dose rounds of old-fashioned drugs effectively eliminated many parts of me, some of them still half-dead, neither of these drugs appeared to significantly reduce my tumor. After we were done with all that cellular annihilation, my own semi-annihilation was obvious but my tumor remained intact. It remained as the full measure of shadow inside the radiance of the screen.
A patient is a system-containing object within a series of interlocking systems full of other system-containing objects. As an object, a patient can function (comply) or break (cease compliance). “To cease compliance” can mean “to display any potential for agency” — to ask, perhaps, too many questions, to bring in conflicting research, to refuse a procedure, to consistently show up to the waiting room at least fifteen minutes late.
If I die from this cancer, I tell my friends, cut my corpse into pieces and send my right thigh to Cargill, my left hand to Apple, my ankles to Procter and Gamble, my forearm to Google.
A cancer patient might believe that to cease compliance with treatment is a revolt against how the system of medicine has objectified them, but they are probably wrong. A patient’s noncompliance is, for that system, not evidence that a person exists as autonomous and thoughtful and capable of intelligent nonconsent, but it is viewed as interference of other systems — contaminating ones such as “misinformation” or “superstition.”
The system of medicine is, for the sick, a visible scene of action, but beyond it and behind it and beneath it are all the other systems, family race work culture gender money education, and beyond those is a system that appears to include all the other systems, the system so total and overwhelming that we often mistake it for the world.
To become a cancer patient is to become a system-containing object inside another system that only partially allows the recognition of the rest of the systems in which one is a node and also almost wholly obscures the heaviest system of the arrangement of the world as it is, which hangs around, too, in the object that contains a system (by which I mean “me”) as part of the problem in the first place, requiring our latent unhealth just as it profits from our active one.
This system we mistake for everything resides in a system-containing object like a tumor inside a system-containing object like a cancer patient who is a system-containing object inside a clinic, all of it also containing these systems of history.
Then there are the traces of that grand and easy-to-mistake-for-everything system, a system we mistake as forever and unchangeable and without remedy and unfair, too, how it resides outside of that patient, both in a close way that she can see how it hurts her and in a faraway she must squint at, barely able to make out its recognizable shapes.
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Anne Boyer is a poet and essayist. She was the inaugural winner of the 2018 Cy Twombly Award for Poetry from the Foundation for Contemporary Arts and winner of the 2018 Whiting Award in nonfiction/poetry. Her books include A Handbook of Disappointed Fate as well as several books of poetry, including the 2016 CLMP Firecracker Award–winning Garments Against Women. She was born and raised in Kansas, and was educated in its public schools and libraries. Since 2011, Boyer has been a professor at the Kansas City Art Institute. She lives in Kansas City, Missouri.
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