by Anne Boyer
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 anesthesia 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 okay. 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 anesthesia 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 center—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.
When Fanny Burney underwent an unanesthetized mastectomy in her Paris bedroom in September 1811 for the lump she discovered the previous August, one of her doctors told her, “il faut s’attendre à souffrir. Je ne veux pas vous tromper—Vous souffrirez—vous souffrirez beaucoup!”
You, the surgeon told her, will suffer a lot.
Burney wrote of her tumor, “I felt the evil to be deep, so deep that I often thought if it could not be dissolved, it could only with life be extirpated.” Weighing a long, painful death by cancer against a short, painful death by its potential cure, she submitted herself to the most optimistic form of suffering. She elected to have the tumor removed.
Seven surgeons arrived in dark robes. Climbing into the makeshift surgical bed and lying with a veil over her eyes, Burney hears the lead surgeon ask, “Qui me tiendra ce sein?” (“Who will hold this breast for me?”), to which she replies, “I will, sir.” She rips off her veil, cradles her own breast in her hand so that the surgeon can begin to amputate it, and explains in detail its radiant web of pain.
At that, the surgeon quietly replaces the veil and puts Burney’s hand back by her side. “Hopeless, then,” she writes, “desperate, and self-given up, I closed once more my Eyes, relinquishing all watching, all resistance, all interference, and sadly resolute to be wholly resigned.”
“They felt as if hermetically shut,” wrote Burney of her eyes during the surgery.7
Suffering doesn’t need to be witnessed to be experienced, and in the case of illness, loss remains, as a source of knowledge, supreme. As in that other famous literary account of a mastectomy—Audre Lorde’s, in which she is anesthetized; then, as she describes in The Cancer Journals, wakes up biopsied, terrified, and transformed—a person’s full participation in loss is also to make an account of how, by necessity of experience, one’s full participation is foreclosed. To have a body means you will not always see what has happened to it.
In Burney’s case, to see what was happening would have been unbearable. Even with her eyes shut, she passed out twice. In order to keep knowing, she relinquished all watching. The account she gives is that which steps beyond the testimony of any eye, which is a testimony to illness’s something else, that realm of experience beyond the visual. On March 25, 1978, Audre Lorde wrote:
The idea of knowing, rather than believing, trusting, or even understanding, has always been considered heretical. But I would willingly pay whatever price in pain was needed, to savor the weight of contemplation; to be utterly filled, not with conviction nor with faith, but with experience—knowledge, direct and different from all other certainties.8
Knowing is something other—for anyone but the expert class, accusable and doubted. And as feeling forbids watching, strong feeling can also impede thinking, or at least in the case of Burney, who writes that her feelings about the event of her mastectomy make her unable to think of the event. But to not be able to think doesn’t mean to not know. Even nine months after her mastectomy, and in the three months it takes to write an account of it down, Burney writes that she can’t reread what she has written without feeling sick. What she has written is not simply an account of a mastectomy. It is an account of that which we must witness but which we cannot allow our eyes to see, of that which we must understand but cannot stand to think about, and of that which we know we must write down but find unbearable to read.
To think about this makes me sick, and to write about it, too, and to read the accounts of the mastectomies of others is often also unbearable. I feel sick, too, about how I am sometimes envious of the horrible circumstances of the past because they are at least differently horrible and differently degraded than our era’s own.
In the 1970s, Audre Lorde, according to The Cancer Journals, spent five days in the hospital being cared for after the removal of one of her breasts.9 Lorde had a hospital room in which she could have visitors, a bed to rest in, was able to start walking through the halls before she walked into her home again, was able to spend weeks recovering, too, and to think of the loss of her breast—not the loss of her capacity to remember, use words, and to think as a result of chemotherapy—as her cancer’s primary event. Despite the lie of progress, so many people with breast cancer don’t get any of this anymore, nor adequate pain control on leaving surgery, nor physical therapy for postmastectomy pain and mobility issues, nor time off work, nor is the loss of a breast nearly their biggest postcancer problem. While they don’t get a hospital bed to recover in or rehabilitation for the cognitive damage incurred during their treatment, what they do get in the United States is federally mandated access to breast reconstruction—any type of implant they want.
When reading historical accounts of breast cancer, I am often struck by a world on which profit hadn’t taken such a full and festering hold. Now, despite inadequate advancement in postsurgical pain management, a patient’s breasts are often cut off, tissue banked and incinerated, then the patient is forced onto her feet and out of bed. What I and so many others experience now are called “drive-by mastectomies.” According to one study by the federal Agency for Healthcare Research and Quality, “45 percent of mastectomies in 2013 were performed in hospital-affiliated outpatient surgery centers with no overnight stay.”10 No matter how eloquently we argue from our recovery beds that we need care after we’ve been cut open, when we are bleeding, raw, shocked, agonized, and drugged, we are not allowed it.
I have to go back to work ten days after a double mastectomy and the beginning of chest expander reconstruction. I’ve been teaching all through the months of chemotherapy before my surgery, but despite this, I’ve run out of medical leave. I would have given up access to every silicone implant in the world to be guaranteed that the career I had built would be still around for me if I could take some time off to treat my cancer, but if one’s cancer treatment exceeds that narrow window of the FMLA’s weeks of unpaid leave, there can be no guarantee.
I’m angry about how much I require myself inside these conditions to refuse to admit the pain that Lorde and Burney and the others before me have so expertly described. I attempt not to feel anything about my mastectomy because to feel the full weight of these events—particularly after half a year of aggressive chemotherapy—would eviscerate the last of my capacity to survive them. I do not mourn my own lost breasts, because the condition of the shared world seems exponentiall
y more grievable.
I’m angry that days after surgery I have little choice but to be driven to work by my friends, all of whom have already had to make great sacrifices to help me, who must carry my books into the classroom for me because I can’t use my arms. Delirious from pain and loss in those days after my surgery, I give a three-hour lecture on Walt Whitman’s poem “The Sleepers”—“wandering and confused, lost to myself, ill-assorted, contradictory”—with surgical drainage bags stitched to my tightly compressed chest, expected to be bravely visible as a breast cancer survivor while my students have no idea what has been done to me or how much I hurt.
A person who complains about any aspect of breast cancer treatment in public is often drowned out by a chorus of people, many of whom have never had cancer, accusing her of ingratitude, saying she is lucky, warning her that her bad attitude might kill her, reminding her she could be dead. Like anyone else with cancer, I am told to be grateful—that I have access to treatment, that I have a meaningful job, that I have friends, that I have, thus far, lived—because it will ease my recovery, and I really am, I guess. As Whitman wrote in “The Sleepers”: “Whoever is not in his coffin and the dark grave, let him know he has enough.” My permit for private grief has long expired like everyone else’s.
It’s probably obvious now that many aspects of experience are so visible and yet many conditions are worse, such struggled-for awareness mostly a disappointing variable of acquiescence, struggled for again and again, only to disappoint again as newly ordinary. Visibility doesn’t reliably change the relations of power to who or what is visible except insofar as visible prey are easier to hunt.
People die visibly, worry visibly, suffer visibly, the whole world opened up to the surveillance of the whole world. The drone pilots kill their visible victims. The corporations data-mine our visible correspondence and count our visible clicks. We post our agonies in our visible support groups. The satellite skies look down on our visible everything although the birds and clouds remain blissfully indifferent, and on the medical screens, once-private interiors are now visible, inside out. Most everyone alive now is smart enough to know that there is an ominous visibility to all that was once directly lived. Identifying a problem brings little of the resolution we really want to it, only now we have the extra work of signal-boosting the common tragedy inside its corporate structure of delimited truth.
And in the tragedy of the tragedy, and in my contradictions, which I suspect aren’t too different from all of yours, this doesn’t mean there aren’t so many sad and wrong and outrageous things I want everyone to know. Some things, however, remain mysterious and unspectacular, and in this, I think, there is hope. The fate of the world relies on the promise of the negative, just as we can rely that sight is not the only sense.
3.
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 antinausea meds, antinausea 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 forty-one years to avenge what has happened it still won’t be enough.
THE HOAX
If Heaven I cannot bend, then Hell I will arouse.
—Epigraph to Freud’s Interpretation of Dreams, 1899
1.
I come across a headline: “Attitude Is Everything for Breast Cancer Survivor.” I look for the headline “Attitude Is Everything for Ebola Patient” or “Attitude Is Everything for Guy with Diabetes” or “Attitude Is Everything for Those with Congenital Syphilis” or “Attitude Is Everything with Lead Poisoning” or “Attitude Is Everything When a Dog Bites Your Hand” or “Attitude Is Everything for Gunshot Victim” or “Attitude Is Everything for a Tween with a Hangover” or “Attitude Is Everything for a Coyote Struck by a Ford F150” or “Attitude Is Everything for Gravity” or “Attitude Is Everything for the Water Cycle” or “Attitude Is Everything for Survivor of Varicose Veins” or “Attitude Is Everything for Dying Coral Reef.”
2.
After the kids at the school he worked at raised funds for him, an Oklahoma teacher’s aide named Ken MaBone was given the keys to a new car to drive himself to cancer treatment.1 The friends of Jenifer Gaskin, a single mother in Oregon, arranged a meal rotation for the duration of her treatment so that she and her children would have something to eat.2 Alicia Pierini tattooed this phrase on her upper arm in italics: “Cancer may have started the fight but I will finish it.”3
The chemotherapy regime Maggie endured made it difficult to walk. Monica broke her leg in two places after her first chemotherapy infusion. Robert lost almost all of his teeth from chemotherapy and began to twitch uncontrollably. John Ingram endured chronic pain from the removal of breast tissue. Diane Green said about the consequence of her mastectomy: “I lost my home, I lost my marriage, I lost my health, I lost my job, I lost absolutely everything.”4
In 2014, Belle Gibson, an Australian lifestyle blogger and author of The Whole Pantry, was declared by ELLE magazine “the most inspiring woman you’ve met this year.” Belle, who claimed to be treating her cancer with diet, said she had cancer of the blood, spleen, brain, uterus, and liver. Except that she didn’t.5
According to published reports, none of these people had cancer. Not the ones who were given cars or the ones who got tattoos or the ones who were given chemotherapy or the ones who endured surgery or the ones who wrote books. Some, like John Ingram and Diane Green, were led to believe by their doctors that they had cancer when they didn’t. Others, like Ken MaBone, Jenifer Gaskin, Alicia Pierini, and Belle Gibson, allegedly led others to believe they had cancer when the evidence suggests that they themselves knew this was not true.
Farid Fata, an oncologist in Michigan, was sentenced to forty-five years in prison for administering chemotherapy to people without cancer.6 The U.K. breast surgeon Ian Paterson was sentenced to fifteen years for removing people’s breasts after leading his patients to believe that harmless conditions were malignant. “I have to pay for my holidays somehow,” he is said to have joked before he was finally convicted of “wounding with intent.”7
Some people are lied to about having cancer. Some people lie about having it. The world is full of anecdotal accounts of cancer fakers, all of whom seem to just want what everyone needs and deserves, some time off, a little spending money, a casserole in the fridge, some love. There are the stories like the one of the man who took a hundred days off from work with forged notes, or the woman who shaved her head and asked for donations at church, or the sister who turned her HPV into full-on cervical cancer for leverage at the holiday dinner table. There are also the doctors who mislead people with benign or mild cancer-related conditions into aggressive, expensive treatment, or the doctors who do not tell patients they are dying, leading them into months of costly, painful, useless interventions. The people who fake having cancer, when found out, often face, if not legal prosecution, social ostracism. The doctors who subtly overtreat patients often don’t.
It isn’t only doctors and patients who do the lying. The researcher Roger Poisson admitted to fabricating or falsifying treatment study data on almost a hundred patients involved in a landmark breast cancer study between the years 1977 and 1990. Poisson claims he tampered with the records for th
e good of his research subjects, many of whom he included in his studies despite their ineligibility. According to a TIME magazine article called “Great Science Frauds,” “investigators found two sets of patient books in Poisson’s lab, one marked ‘true’ and another labelled ‘false.’”8
In September 2017, a large multidistrict litigation was filed stating that the manufacturer Sanofi-Aventis failed to adequately warn patients and doctors about life-altering adverse side effects of Taxotere. As early as 2009, the FDA had sent warning letters to Sanofi that some of its claims about the drug were false.9 In another case, in July 2017, the pharmaceutical manufacturer Celgene agreed to pay $280 million in claims that it marketed cancer drugs for unapproved uses.10 Increasingly, claims the FDA, “bogus remedies claiming to cure cancer in cats and dogs are showing up online.”11
According to news reports, a British woman, Kelsey Whitehead, thirty-eight, shaved off her hair, used makeup to create the effect of illness, and forced herself to vomit at work. She bought a Hickman line—a surgically implanted port sometimes used for the administration of chemotherapy—and cut open her own chest to insert it. The judge who sentenced her for fraud told her she had “a real psychological problem.”12
The pharmaceutical companies lie. The doctors lie. The sick lie. The healthy lie. The researchers lie. The Internet lies.
Cureyourowncancer.org, which sells cannabis oils and $45 snapback hats with a hemp leaf logo and the phrase “I kill cancer,” claims, “Big Pharma lies to convince us that their so-called cancer ‘cures’ work.” The description under the nine-minute-and-forty-four-second YouTube video “The Cancer Hoax Explained” simply reads: “The Medical Industry Kills You.”