Life as a cancer patient: ‘it feels like dying from the drugs meant to save me’
When the technician leaves the room, I turn my head towards the screen to interpret any neoplasms, the webs of nerves, the small lit fonts in which my pathology or my future might be written. The first tumour I ever saw was a darkness on that screen, round with a long craggy finger jutting from it. I took a photo of it from my examination bed with an iPhone. That tumour was my own.
To be declared with certainty ill while feeling with certainty fine is to fall on the hardness of language without being given even an hour of soft uncertainty in which to steady oneself with pre-emptive worry. Now you don’t have a solution to a problem, now you have a specific name for a life breaking in two.
Illness that never bothered to announce itself to the senses radiates in screen life, as light is sound and is information encrypted, unencrypted, circulated, analysed, rated, studied and sold. In the computer servers, our health degrades or improves. Once we were sick in our bodies. Now we are sick in a body of light.
Welcome to the detectors with names made of letters: MRI, CT, PET. Earmuffs on, gown on, gown removed, arms up, arms down, breathe in, breathe out, blood drawn, dye injected, wand in, wand on, moving or being moved – radiology turns a person made of feelings and flesh into a patient made of light and shadows.
There are quiet technicians, loud clatters, warmed blankets, cinematic beeps.
We are told cancer is an intruder to be fought, or an errant aspect of ourselves, or an overambitious cell type, or an analogy for capitalism, or a natural phenomenon with which to live, or a certain agent of death. We are told it is in our DNA, or we are told it is in the world, or we are told it is located in the confused admixture of genes and environment that no one can locate or wants to. We are given only the noisy half of probability that its cause is located inside of ourselves and never the quiet part of probability that cancer’s source pervades our shared world. Our genes are tested: our drinking water isn’t. Our body is scanned, but not our air. We are told it is in the error of our feelings or told it is in the inevitabilities of our flesh. We are told there is a difference between illness and health, between what is acute and what is chronic, between living and dying, too. The news of cancer comes to us on the same sort of screens as the news about elections, in email at the same minute as invitations to LinkedIn. The hash marks of the radiologists are the same as those of the drone pilots. The screen life of cancer is the screen life of all mediated global terror and unreality, too.
The breast surgeon said the greatest risk factor for breast cancer was having breasts. She wouldn’t give me the initial results of the biopsy if I was alone. My friend Cara worked for an hourly wage and had no time off without losing out on money she needed to live, so she drove out to the suburban medical office on her lunch break in order that I could get my diagnosis. In the US, if you aren’t someone’s child, parent, or spouse, the law allows no one else guaranteed leave from work to take care of you.
If you are loved outside the enclosure of family, the law doesn’t care how deeply – even with all the unofficialised love in the world enfolding you, if you need to be cared for by others, it must be in stolen slivers of time. As Cara and I sat in the skylit beige of the conference room waiting for the surgeon to arrive, Cara gave me the switchblade she carried in her purse so that I could hold on to it under the table. After all of those theatrical prerequisites, what the surgeon said was what we already knew: I had at least one cancerous tumour, 3.8cm, in my left breast. I handed Cara back her knife damp with sweat. She then went back to work.
On a scrap of yellow paper, the oncologist – the one my friends and I later called Dr Baby because of how much he resembled a cherub – wrote in a childish hand, “hormone receptive-positive breast cancer”, explaining that there were targeted treatments for it, then crossed it out.
Then he wrote, “Her2-positive breast cancer”, explaining that there were targeted treatments for it, then crossed it out. Then he wrote “Triple Negative”, and explained that there were no targeted treatments for it. Accounting for between 10% and 20% of breast cancers, it has the fewest treatment options and significantly poorer prognoses than others, responsible for a disproportionate number of breast cancer deaths. He said this was the cancer I had. He said the tumour was necrotic, which meant that it was growing so quickly it failed to build infrastructure for itself. He wrote down “85%” for the tumour’s growth rate, and I asked him what that meant. He told me that a Ki-67 score of “anything over 20%” was highly aggressive.
He then said, “neoadjuvant chemotherapy”, which meant “right away”. I didn’t agree to dissect any nodes or biopsy the other potential areas the doctors feared were tumours: this one certain tumour was bad news enough, and its treatment would be so aggressive I felt like there wasn’t any point in a painful intervention to know what else was there.
To not submit to chemotherapy was to die, Dr Baby suggested. To submit to it, I thought, was to feel like dying but possibly to live, or to die from secondary effects rather than primary disease, or to live, finally, almost restored, but not quite.
Diagnosis has diminished my ability to tell the difference between good advice and empty ideology. Everything I am advised to do in response to the cancer seems, at first, like a symptom of a world that is sick itself. I read on a discussion board that cutting my hair short will make its eventual loss easier to bear. I try to believe this. I usually cut my own, but this time make an appointment at a salon and sit in the elevated chair, saying nothing, while a blond stranger chops my long dark hair above my shoulders.
As my hair falls into a pile to be swept up later by a poorly paid assistant with a broom, I realise then that without ever knowing it I had, at least some years of my life, almost been beautiful and now wouldn’t be any more. I think, too, of how once I always insisted that the best thing about life was that hair grew, which was the simple evidence that nothing stayed the same for ever, and therefore proof of the possibilities that the world could change. Now it wasn’t just that my hair would fall out, it was that my follicles would die, and painfully, that what once grew would stop growing even as I myself kept living, and everything I once understood about the world as evident would be subject to another proof.
No one knows you have cancer until you tell them. I take a screen capture of John Donne’s first devotion and post it to Facebook: “We study health and we deliberate upon our meats, and drink, and air, and exercises, and we hew, and we polish every stone that goes to that building; and so our health was long and a regular work: but in a minute a cannon batters all.”
It gets a lot of likes. Then I follow the other instructions I find on the internet: tell my mother, tell my daughter, deep clean the kitchen, negotiate with my employer, find someone to watch the cat, go to the thrift store to find clothes that will accommodate my coming chemo port, worry on the phone to my friends that I have no one to take care of me. It is decided without ceremony that the doctors will eventually take my breasts from me and discard them in an incinerator, and because of it, I begin the practice of pretending that my breasts were never there.
In the waiting rooms, the labour of care meets the labour 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. The work of abstracting a person into a patient is women’s work – it only appears, at first, to be the work of machines.
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 10? I try to answer, but the correct answer is always a numerical. 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.
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 per-form care (or what is sometimes called “reproductive labour” – 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, neighbouring, 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 tumour (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.
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 labelled me. 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 60 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. 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 rumoured, 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.
Treatment with Adriamycin can cause leukaemia, 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 27 hours, but the damage cascades beyond treatment, is often sustained for years. As I sit in the infusion chair, the white and grey 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 minimised 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 dorso-lateral 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.
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.
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 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 analyse 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, 40 or 48 or 60 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.
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 400 to 800 days. 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. Cancer spending was $130bn in 2017, greater than the GDP of more than a hundred countries. 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 US 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 OK.
After the cancer has you, you forget how much life you have lost to living, and also how much of yourself you have lost to illness because it is difficult to take care of the illness and to take care of yourself as well. To take care of your illness can become the whole reason for existing, a marriage arranged by fate, and later when it isn’t the acute illness stealing life from life it is the chronic disabling conditions left over from curing it, too.
My body feels like it is dying as a side-effect of what is promised to keep it alive, and requests, as its preservation, its destruction: to not move, to not eat, to not work, to not sleep, to refuse all touch. Every nerve is a beggar, asking for the alms of an end. Any wisdom of my body comes out as an insufferably melodramatic request made by a fool. I had to believe, however, that all my body meant by wanting to die then was not that it hated life, only that it could no longer bear this.
Then my body bore the unbearable, as many of ours do. Sometimes the only way to survive the worst is to run to the perfect refuge of being dulled. Disassociation reigns, but no one minds your daydreaming when you are sick with cancer. Some friends appear to wish that I would disassociate more, that I would give up my love of lucidity through events better survived in mental retreat.
Despite icing my hands and feet all during chemotherapy in an attempt to avoid it, my fingernails and toenails begin to lift from their beds. Fingernails lifting from fingers hurt as badly as fingernails lifting from fingers should. I bandage my iridescently painted nails on to me. I’ve lost friends, lovers, memory, eyelashes and money to this illness, so I am stubbornly opposed to losing anything else to which I am attached. My nails fall off despite my opposition to their loss.
My nerves begin to die, disintegrating into a sizzling sensation from their ends in my fingers, toes and genitals. Then my fingers are the most annoying solipsists: numb to the world, outraged in their interiors. Your Oncology Journey says the solution to this condition, neuropathy, is to ask others to button my shirt, but it doesn’t explain who. I’m made clumsy by altered proprioception, too. I can no longer trust my feet to tell me where I stand.
A woman I know tells me that she, as she had once known herself, has never really returned from the cancer she had 30 years ago. Now in her 70s, she says that she goes to work and comes home each day to spend her hours in disassociated blankness, and because she has to work for a living, must go there once more in the morning and pretend that she exists again. Some of us who survive the worst survive it into bare inexistence.
The lost parts of our souls are no more replaceable than the lost parts of our bodies, life incrementally lifting from life, just like that. And there we are, mostly dead, but still required to go to work.
In the capitalist medical universe in which all bodies must orbit around profit at all times, even a double mastectomy is considered an outpatient procedure. After my mastectomy, the eviction from the recovery ward came aggressively and early. The nurse woke me up from anaesthesia and attempted to incorrectly fill out all the questions on the exit questionnaire for me while I failed in an attempt to argue with her that I was not OK. I told her that my pain was not managed, that I had not yet actually gone to the bathroom, that I had not yet been given instructions, that I could not stand, let alone leave. Then they made me leave, and I left.
You can’t drive yourself home the same day you have had a double mastectomy, of course, whimpering in pain, unable to use your arms, with four drainage bags hanging from your torso, delirious from anaesthesia and barely able to walk. You are not supposed to be alone when you get home, either. But no one really asks how you manage it once you are forced out of the surgical centre – who, if anyone, you have to care for you, what sacrifices these caregivers might have to make or the support they require. It should be no surprise that single women with breast cancer, even adjusting for age, race and income, die of it at up to twice the rate of the married. The death rate gets higher if you are single and poor.
Everyone understands as a matter of fact that unless you are currently entered into this world’s customary romantic partnership, or unless you have lived long enough to raise devoted grown children, or unless you are young enough to still be in the care of your parents, you are, on the occasion of aggressive cancer in the conditions of aggressive profit, rarely considered worth enough to keep alive.
I have always wanted I have always wanted to write the most beautiful book against beauty. I’d call it Cyclophosphamide, doxorubicin, paclitaxel, docetaxel, carboplatin, steroids, anti-inflammatories, antipsychotic antinausea meds, anti-anxiety anti-nausea meds, anti-nausea meds, antidepressants, sedatives, saline flushes, acid reducers, eyedrops, eardrops, numbing creams, alcohol wipes, blood thinners, antihistamines, antibiotics, antifungals, antibacterials, sleep aids, D3, B12, B6, joints and oils and edibles, hydrocodone, oxycodone, fentanyl, morphine, eyebrow pencils, face creams.
Then the surgeon called to tell me that as far as she could tell, the drugs had worked, the cancer is gone. The double mastectomy performed after six months of chemotherapy revealed a “pathologic complete response”, the outcome I’d hoped for, the one that gave me the greatest chance that when I die, it won’t be of this.
With that news, I am like a baby being born into the hands of a body made only of the grand debt of love and rage, and if I live another 41 years to avenge what has happened, it still won’t be enough.
The Undying: A Meditation on Modern Illness by Anne Boyer is published by Allen Lane
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