by Anne Boyer
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.”2 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 Dr. Baby 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.3
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.”4 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.5
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.6 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.7
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.
Then people leave, friends drop off, lovers abscond with all possibility of you ever again being fond of them, colleagues avoid you, your rivals are now unimpressed, your Twitter followers unfollow. To the people who have left you, it is possible you are either the most object-like of all possible objects (that you are to someone a thing to be discarded like trash) or the most human that you can be in the situation of this illness (for how strongly, on being discarded, you feel forlorn). Or, as you have learned that anything is possible during catastrophic illness, you could be the most human and the most object all at once.
The ones who have abandoned you, who—now that you are sick—have ceased to speak to you or come around or just say out
right that they can’t handle it, say that your illness is, as they say, “too difficult” for them, have a hand at creating your existence, at least partially, as someone who will always, at least in part, stay well. To them you are static and permanent. The people who left won’t watch you suffer or diminish, so you are, by their actions, kept forever as you were at the moment of diagnosis. You remain vibrant and unaltered in their memories: your hair is thick, your mind is lively, and your eyelashes are long and falling against your flushed cheeks. The abandoners are the people who never have to see you as anything but you.
To yourself, who has not yet developed the consciousness required of your way of life as an object, the abandonment causes you to feel less human mostly in the manner of feeling entirely like an animal. You feel like the kind of animal who is melancholy and looks at any object and wishes to be it instead of yourself, wishes to be a chandelier, maybe, or a silver-plated fork or a wall-mounted machete, wishes to be anything (a bench, the broken heel of a shoe, a locust shell, a flashlight without batteries, a book about ships, a crack in the floorboard, an oak leaf in the gutter, a scalpel, a particle, an attic, a big-box store) but a sick and abandoned animal, wishes to be anything in the world but that which was once loved and now is left alone.
In the week before chemotherapy, it is like preparing for a winter storm, or a winter storm and a houseguest, or a winter storm, a houseguest, and the birth of a child; also, maybe it is as if preparing for all of these and a holiday, a virus, and a brief but intense episode of depression, all while also suffering the effects of the previous storm, houseguest, birth, holiday, virus, and depression.
The day before chemotherapy, a friend arrives from someplace I would rather be—California or Vermont or two different towns named Athens or New York or Chicago. Then it is exactly as it is: as if a friend has arrived from far away. On that day, I do everything to look healthy so that my friend will praise the skillfulness of my camouflage, its materials purchased at Wigs.com, CVS, and Sephora. On the day before chemotherapy, we don’t speak of chemotherapy any more than is necessary for the practical exchange of information, like what time to set the alarm and the best route to the pavilion. We pass our time as friends would, roasting vegetables and listening to music and speaking excitedly of other friends or ideas or political events.
The day of chemotherapy we wake up early and arrive at least fifteen minutes late. We predict how well the treatment will go by what song is on the car radio: “Bohemian Rhapsody” (not so good), TLC’s “Waterfalls” (better). Chemotherapy, like most medical treatments, is boring. Like death, it is a lot of waiting for your name to be called. It is also waiting while the potential for panic and pain hangs around, too, waiting for its name to be called. In this it is like war. The aesthetics of chemotherapy appear to have been decided by no one. That makes them like everything ideological. Later we begin to understand the costumes, machines, sounds, rituals, and architectures.
A nurse in a hazmat suit inserts a large needle into my plastic subdermal port. First things are drawn from me, then things are flushed in and out of me, then things drip into me. For each of these things that drip into me, I must say my own name and when I was born.
Of the many drugs that I am infused with, some of them are drugs with familiar, clear-cut effects: Benadryl, steroids, Ativan. I should know how these feel, but in this context, they never feel like themselves. Instead, they combine with the chemotherapy drugs into a new feeling, each type of chemotherapy mixing with its additives into a unique mush of hybrid lack of clarity.
I was once a prompt person, now I am always late. I was once a person who reacted strongly to a cup of coffee, now I am a person who behaves demi-unreactively to the sludge of substances inside me. I explain to my friend as I am being infused, “They are giving me all the drugs, every last one of them.” The oncology nurse agrees, “Yes, we are. We are giving her all the drugs.”
I try to be the best-dressed person in the infusion room, wrap myself up in thrift-store luxury and pin it together with a large gold brooch in the shape of a horseshoe. The nurses always praise the way I dress. I need that. Then they infuse me with a platinum agent, among other things, and I am a person in thrift-store luxury with platinum running through her veins.
After the infusion is over, I sit up until I fall over. I don’t give up until I give up, try to win all the board games, remember all the books any of us have read, go out if I can, try to flirt and gossip and analyze into the night. Terrible things are happening in my body. Sometimes I will say it to my companions: “Terrible things are happening inside of me.” Finally, forty or forty-eight or sixty hours later, I can’t move and there is nothing to take for the pain, but trying to be obedient to medicine and polite to my friends, I take something for the pain.
Then there is the slow drip of circumstance and effect—a new problem or several each day for seven days or fourteen of them. I begin to feel a flicker of ambition again: first alien, then increasingly like myself—or myself, but disabled, but never predictably disabled, only as if a cloud of disability floats around my body, landing in one system or location or the next and then finding another, quickly, as soon as I have compensated for it.
I have always wanted to do everything and know everything and be everywhere, and because of this, I feel left out, captive, bored. But mostly I feel asynchronous—both hurried and left behind. Time, apart from pain, work, family, mortality, medicine, information, aesthetics, history, truth, love, literature, and money, is cancer’s other big problem.
2.
At the fullest expression of its treatment, breast cancer is near total strike: striking hair, striking eyelashes, striking eyebrows, striking skin, striking thought, striking language, striking feeling, striking vigor, striking appetite, striking eros, striking maternity, striking productivity, striking immune system, negated fertility, negated breasts.
Self-manage, the boss that is everyone says: work harder, stay positive, draw on eyebrows, cover your head with a wig or colorful scarf, insert teardrop- or half-a-globe-shaped silicone under your scarred skin and graft on prosthetic nipples or tattoo trompe-l’oeil ones in pubescent pink or have flaps of fat removed from your back or belly and joined to your chest, exercise when tired, eat when repulsed by food, go to yoga, do not mention death, take an Ativan, behave normally, think of the future, cooperate with the doctors, attend “look good feel better” for your free high-quality makeup kit,8 run a 5K, whether-or-not-to-wear-a-wig-during-sex is a question the book says to ask your husband, “one family member at a time” says the sign on the way to the infusion room, the pink ribbon on the for-sale sign of the mansion.
The broad hand of cliché helps out with painful humiliations. Also useful are contradictory unspecifics, as if what actually happens can be unfelt by remaining wrapped up in the padding of being confused.
People with breast cancer are supposed to be ourselves as we were before, but also better and stronger and at the same time heart-wrenchingly worse. We are supposed to keep our unhappiness to ourselves but donate our courage to everyone. We are supposed to, as anyone can see in the YouTube videos, dance toward our mastectomies, or, as in Sex and the City, stand up with Samantha in the ballroom and throw off our wigs while a banqueting crowd roars with approval. We are supposed to, as Dana does in The L Word, pick ourselves up out of dreary self-pity and look stylish on the streets in our headscarves. If we die later, as Dana does, we are supposed to know our friends will participate in a fund-raising athletic event and take a minute, before moving on to other episodes, to remember that we once lived.
We are supposed to be legible as patients and illegible as our actual selves while going to work and taking care of others as our actual selves now with the extra work of the false heroics of legibility as a disease: every patient a celebrity survivor, smiling before the surgery and smiling after, too, bald and radiant and funny and productively exposed. We are supposed to, as the titles of the guidebooks instruct, be feisty, sexy,
thinking, snarky women, or girls, or ladies, or whatever. Also, as the T-shirts for sale on Amazon suggest, we are always supposed to be able to tell cancer “you messed with the wrong bitch.”
In my case, however, cancer messed with the right bitch.
I know the point of a test designed so everyone will fail is that no one will pass that test. Then we all feel like failures, but each of us thinks we have failed alone.
Some of us prefer to take the form of background noise, wearing a wig and refusing legibility’s grosser narrative.
I like wigs. I wear wigs. People I like wear wigs. Dolly Parton wears wigs. Beyoncé wears wigs. Enlightenment philosophers wore wigs. Drag queens, Egyptian princesses, and grandmothers wear wigs. Medusa wore a wig made of snakes.
If you hadn’t consented to treatment, the bad feelings would probably have come later. But you did, so the bad feelings are happening now. The only certain universe of a Thursday morning is sterile, hypothetical, and smelling of Purell. A sparrow flies head-on into the window of the pavilion, recovers, then does it again. Everything seems decorated as a protest against interesting. The poet Juliana Spahr has come to visit from California, and she and I fill out prayer cards in the lobby and slide them through the slit cut in the gift-wrapped shoe box: Please pray, we write, for American poetry.
After chemotherapy on Thursday, I come back to the clinic on Friday for a blood panel and Neulasta—a synthetic protein designed to stimulate the production of white blood cells and ward off infection. At the time of my treatment, each Neulasta shot costs seven thousand dollars, and I get the shot while dressed in my regular aesthetic resistance: Chagall-blue tights, blond wig, a persimmon-colored vintage coat, and—because of my failing immune system—a thin paper mask.
How to stay safe in cancer’s pastel-colored danger? You can’t retreat into yourself for safety from what is inside yourself or run from yourself for safety from yourself. You can’t fight what is in you outright, as one might against an attacker or a wild beast. If you do, joke’s on you, you are fighting yourself, like when the older kids took hold of your arm and punched your own face with it, forcing you to hit yourself while they repeated “quit hitting yourself” until you cried. When you have cancer, you have to learn to understand what is growing inside you as that which is both yourself and not yourself, as yourself and a thing that, if all goes well, will be taken out of you, too. Self-love under these conditions appears to require you to love the cancer in yourself and to hate it as a threat to yourself, too.