by Anne Boyer
Every month is Pinktober when you have breast cancer, and every actual October is a season in hell. The world is blood pink with respectability politics, as if anyone who dies from breast cancer has died of a bad attitude or eating a sausage or not trusting the word of a junior oncologist. After my chemotherapy seems to work, people say how they knew that I, of course, would survive, as if I were someone so special and strong and all the others weren’t.
Online forums keep ongoing accounts of losses from breast cancer. The women post stories about themselves as contented survivors walking into the doctor’s office to treat a headache and then learning that they are dying of aggressive metastatic cancer, an answer to a question they never asked. The women say goodbye to the Facebook groups, email lists, and forums, or their partners do. The women know when they will die, which is too soon. Some will do anything to live, and then they die of that.
These are not the deserving dead. The pink ribbon cop cars and pink handcuffs and pink spirit-wear and pink ping-pong balls and pink plastic water bottles and pink revolvers should not be mistaken for a progress that the dying women somehow disappoint. Pink ribbons adorn the objects and processes that kill people. There is no cure and never has been.
In the United States, more than forty thousand people die of breast cancer each year: that’s one woman dying of breast cancer about every thirteen minutes. If chemotherapy is too late or the wrong kind or otherwise ineffective, triple negative—the type of breast cancer I have—leaves the breast quickly, gallops over the body, and blooms in the body’s soft parts: brain, lungs, liver. Then you can’t breathe, can’t live, can’t think.
Many people, of course, don’t know that there are breast cancers, plural, or the difference between one kind and another, or that anyone with breast tissue can get breast cancer, men and women and nonbinary people, cis and trans, young and old, fit and infirm, straight and queer. No cancer is a good cancer, but the people with the more common, hormone-receptor-positive breast cancers can often take tamoxifen, eat soy, look to the future, say in the cancer chat rooms, as they did so often that I couldn’t bring myself to look, “at least I am not triple negative.” And although most people with Stage 4 breast cancer will probably die of it, those with hormone-receptor-positive breast cancers know that if their cancer metastasizes, there is a chance it could do this slowly, choosing as its first site of invasion the slow hard substance of their bones, allowing them some time to live.
The women in online groups who are in the fourth stage of triple-negative cancer aren’t likely to think in years. They post about their basal-type cells replicating fast, of the glowing spots on their brains. Others post of their fears of the feeling of dizziness or a cold that won’t go away or is-it-cognitive-damage-left-over-from-chemo-or-is-it-a-tumor-in-my-brain or being at work with nerve-dead hands that can’t manage a keyboard or hold a pen. Triple negative strikes black women disproportionately, and because of medicine’s institutionalized racism, I think, has been the last breast cancer left with no targeted treatment. It also disproportionately afflicts the young, is a cancer that appears to operate with the logic that the healthier the body, the more aggressive and deadly it will be. “The good news,” the oncologist said when he first introduced me to our pathology, “is that at least there is chemo.” These women’s deaths are racist and unnecessary, and our grief over them should tear open the earth.
The women on the forums who live call the women who have died “angels.” Some women’s lives follow closely another set of grim statistics: during active treatment, but particularly after it, they are abandoned, divorced, cheated on, abused, disabled, fired. Poverty and heartbreak both take iatrogenic forms: it is medical treatment, not the disease, that seems to cause them. On social media, the accounts of dying of a disease so many people mistake for curable weave into the accounts of breast cancer survivors being abandoned and impoverished, unemployable and brain-damaged and in pain. These weave into the posts, too, of my friends and acquaintances, their political debates and literary scandals and well-informed opinions, and weave, too, into news of police shootings, climate despair, action on the streets.
On an email list I joined the summer after treatment, patients from all over the world commiserated about living with the grievous effects of one of our chemotherapy drugs. We wrote to one another about the triumph of persuading the FDA to issue warnings about the drug, and once the legal battles started, over whether or not the drug company misrepresented its efforts. We made jokes about the ambulance-chasing commercials on national TV. “The most blatant case of failure to disclose in the history of the pharmaceutical industry” is what the lawyer I could never bring myself to hire for a lawsuit I didn’t have the energy to pursue said to me. In the months after my treatment when I learned that I, too, would suffer for the rest of my life from the previously undisclosed side effects of this drug, I was unable to stomach devoting my survival to a lawsuit. By the time I could bring myself to call to get the records to confirm which lot of the drug I was given, the lawsuits had become public and my records couldn’t be tracked down. I’ll never know if these two facts are related. Years later, despite not joining the suit, I learned that the lawyers for the drug company had subpoenaed my email data for merely participating in the support group. I had to find a lawyer in order to try to stop my story from becoming part of a lawsuit against my will, and although I didn’t want cancer, or the drug, or the lifelong consequences of the drug, or to participate in the lawsuit about the alleged lifelong consequences of the drug, it began to feel as if the aftermath of the aftermath of cancer treatment might never end. A nonprofit dedicated to consumer privacy helped me, but I still feel like the drug company that did this will—like cancer itself—always be looming, waiting to knock at my door.
Too many women I know say they wish they had chosen, instead of treatment by drugs with mutilating and disabling effects, to die of their cancer. The ever-after of our profit-and-drug-damaged lives has been too much for them to bear. But this is a false dilemma. In the case of the drug in question, it looks like there were other drugs available that were just as effective with less risk of permanent harm, but the drug we were treated with and that hurt us was, to someone, seemingly the more profitable choice. Some women send suicide notes, too, saying they can’t go on living. These emails weave into my other emails, the ones from work and Ulta and editors, an eviscerating sadness sailing across information’s level plane.
You will understand, I hope, that because of all of this, every pink ribbon looks like the flag of a conqueror stuck in a woman’s grave.
3.
In a video entitled “I’m Dead =(” the vlogger Coopdizzle, a self-described mother and wife who recorded the video in her last days of life with triple-negative breast cancer, said, “When you get cancer it is such an eye opener.” I first learn about Coopdizzle because she has left a comment under the video of another triple-negative breast cancer patient, Christina Newman, whose videos I begin to watch after I am diagnosed.
In a 2011 video, “Why I Rejected Chemo & Radiation,” Christina Newman describes how she decided to try to heal her cancer with diet. Coopdizzle comments under that particular video that it is Christina Newman’s story that has inspired her to go along with standard medical treatment. After this comment, I begin to follow Coopdizzle’s videos, too, because Christina Newman’s story had the same effect on me. It’s because of Christina that I keep going to chemotherapy even when I don’t want to. Following an unsuccessful attempt to treat her cancer with diet, Christina Newman eventually turns to chemotherapy and warns others away from her earlier choices.
The diagnosis of Newman’s spreading cancer came to her in a set of increasingly painful revelations. Christina says that she began to feel off, and despite her insistence that something was wrong, she said the doctors dismissed her concerns as posttreatment complaints and missed that she was pregnant. She gave birth to a daughter, Ava, in a surprise birth during a dangerous episode of pre
eclampsia. With her symptoms still not resolved, Christina kept complaining to doctors, who she said continued to push aside her concerns, now dismissing her complaints as postnatal. According to Newman, they said that they doubted they would find anything until they did find something. What they eventually found was that her liver was full of aggressive triple-negative cancer and that she was dying, a new infant in her care. Under the video in which Christina Newman announced her first decision to reject chemotherapy—the first scene of a story that turns into that cascading nightmare—someone has written, “To all you herbalists and natural alternative medicine bullshit con artists, THIS is what happens when you spew your bullshit.”
In the video entitled “Final DAILY family vlog. The news is getting worse #72,” Christina’s partner says, “She’s not ready to give up. She don’t want to give up.” It’s Christina’s last post. I remember first watching this video in the early weeks of my cancer treatment, grief-stricken for Christina and terrified for myself. Christina was still alive then, sitting next to her partner, breathing oxygen through a tube, barely able to talk, her face rounded by steroids. It’s the last I and her other viewers ever saw of her. The videos that follow it are from a friend who describes Christina’s last hours alive, how much she wanted to record more YouTube videos, the way she seemed upset as the priest administered the last rites, the difficult hours after that it took for her to die.
On Christina’s YouTube page someone congratulates Christina, no longer living, on her number of followers. A commenter named Tommy Rockett offers, “Hello cristina you should try apricot kernels do the research if your not sure but I’m convinced nothing works better,” and one named Vermillion J writes, “Please research RICK SIMPSON and his HEMP OIL. Many people have testified that this oil has cured their cancers within months after they started taking the oil. Watch the film on Youtube ‘Run From The Cure.’” Charlie R writes, “May I suggest something? Cancer can only live in a low pH environment. You should drink alkaline water, as it has a high pH and may help you greatly,” and the user bluewaterrider writes, “Christina. Please type in UC Television Vitamin D cancer in the YouTube search box. Examine the videos. 75% reduction in mortality rate in some cases. Also, get 2nd opinions. Doctors are NOT equally knowledgeable, nor will all give you the advice you need. If you’re REALLY disciplined, also look up Ketogenic Diet.” A commenter named gmasters writes, “You should really research and consider dry fasting or urine therapy. These have been known to make childs play out of cancer.”
I’ve never seen a real pink ribbon in the context of breast cancer. I’ve seen no silks or grosgrains, only representations of pink ribbons made of and on something else: a massive chalk drawing of a pink ribbon in a parking lot, a sticker of a pink ribbon on a car dealership window, a ribbon shape assembled from dyed martial arts belts on display in the surgeon’s office, pink tinsel ribbon shapes on a silver tinsel tree, ribbons printed onto shirts and socks, ribbons airbrushed on the sides of cop cars and trash dumpsters, enameled ribbons on silver chains.
The activist Charlotte Haley, whose grandmother, sister, and daughter all had breast cancer, is credited by some for creating the first ribbon—a real one—for breast cancer in 1990. According to Breast Cancer Action, “To each packet of five ribbons she attached a postcard that read: ‘The National Cancer Institute’s annual budget is $1.8 billion, only 5 percent goes for cancer prevention. Help us wake up legislators and America by wearing this ribbon.’” Haley distributed these cards wherever she could, requesting no donations, spreading her campaign by word of mouth.13
When Self magazine and the Estée Lauder corporation approached Haley for a marketing partnership, the now-well-known story is that she refused to help them, saying they were too commercial. The Estée Lauder corporation did not let Haley’s refusal stop them, however, and on the advice of their legal team, altered the ribbon color from peachy pink to classic pink, handing out more than a million pink ribbons in the fall of 1992. By 1993, Avon, Estée Lauder, and the Susan G. Komen breast cancer charity were all selling pink ribbon products. By 1996, breast cancer was declared, as a corporate charity recipient, “hot.”14
On Coopdizzle’s YouTube page there is an autoplay introductory video of her son laughing. Coopdizzle has written in its description: “Just Kayden being silly. I needed to clear space off my iPod lol.” She follows this with a request that viewers stop suggesting treatments. “This part of my journey,” she writes, “is my final journey.”
Coopdizzle, who was in her thirties when she died, was diagnosed with triple-negative breast cancer the same year that I was, 2014. I began to follow her videos in the first weeks of my illness. We had similar diagnoses and similar courses of treatments: neoadjuvant chemotherapy with surgery after. My treatment worked and hers didn’t, and there is no way to know how or why. Diagnosed in March 2014, by May 2015, Coopdizzle was told her cancer had returned. She died in December 2016 and spent her last months of life as a metastatic breast cancer activist, writing about her experience, talking to the media, organizing with others for collective action, and lobbying, among other things, for death with dignity and against a pink ribbon and breast cancer “awareness” culture that profits off of the continued suffering of the sick.
Coopdizzle’s commitment to activism lives beyond her, including in this public post that remains pinned at the top of her Facebook page:
First it’s not about THE ribbon. It’s about the Komen. It’s about the fact that when the REAL Susan passed from metastatic breast cancer her sister said she would help find a cure. 30 years later we are no better off, in fact it’s gotten a bit worse. SGK only donates a very small amount to the research of terminal breast cancer. They shove us under the rug and act like we aren’t real. They profit off your donations and have mansions and very nice cars.
Susan G. Komen for the Cure, the world’s largest breast cancer charity, began in 1982, and in 2016, according to its financial statements, raised almost $211 million for breast cancer awareness and research, and has raised $956 million to date. Komen for the Cure, which sponsors the popular Race for the Cure fund-raisers, has also conducted a robust public relations campaign against the criticism directed at it by breast cancer activists.
Komen for the Cure tells a different story about the genesis of the pink ribbon. According to the Komen version, called “The Pink Ribbon Story”: “Susan G. Komen for the Cure® has used the color pink since its inception in 1982. The first Komen Race for the Cure® logo design was an abstract female runner outlined with a pink ribbon and was used during the mid 1980s through early 1990s.” Self and Estée Lauder joined in the effort in 1992, according to Komen. Charlotte Haley’s peach ribbons are not admitted into the story.15
The Komen foundation once partnered with KFC for “Buckets for the Cure,” which sold fried chicken in large pink buckets. In 2011, the Komen foundation also marketed a perfume on the Home Shopping Network called “Promise Me,” which the activist Breast Cancer Action pointed out contained the potentially carcinogenic ingredients of coumarin, oxybenzone, toluene, and galaxolide. Komen agreed to reformulate the perfume, but denied that the perfume contained harmful materials.16 During the first Pinktober after Coopdizzle and I were diagnosed with breast cancer, 2014, Komen’s CEO, Judith Salerno, earned a salary of $420,000. Also in 2014, the Baker Hughes corporation partnered with Komen to produce a thousand breast-cancer-pink fracking drills. As Karuna Jagger, president of Breast Cancer Action, said, “When future generations have to choose between safe drinking water and developing breast cancer, they can look back and thank Baker Hughes and Susan G. Komen.”17
On Coopdizzle’s Facebook page, Coopdizzle’s partner describes the process of her death: “I can feel it—her burning desire to just live. I want so badly to give that to her. If only I could. If only I could.”
“It’s a scary place,” Coopdizzle once wrote, “inside cancer land.”
Nelene Fox, a schoolteacher in California, was diagnosed with breast
cancer in 1991 at the age of forty. She requested that her health insurance company cover what appeared to be a promising new treatment—a bone marrow transplant with high-dose chemotherapy. They refused. Although she was able to raise private funds to cover the treatment, she died two years after her diagnosis. Her brother took the health insurance company to court, and Fox’s family was awarded $89 million in damages.18 Eighty-six other cases were filed, and forty-seven were successful. Four state legislatures mandated that the treatment be covered. Buoyed by the success of AIDS activism, women with breast cancer began an aggressive lobby for access to this new treatment. Hospitals billed the highly profitable procedure at between $80,000 and $100,000, with a cost to the hospital of less than $60,000. Health insurers began to reluctantly acquiesce, and eventually more than 41,000 breast cancer patients were given the treatment.
Researchers, doctors, and patients made optimistic claims, widely quoted in the media, that this treatment might finally be the cure. The process was long and painful, and involved isolating patients in hospital rooms for days. Side effects included sepsis, hemorrhagic cystitis, bone marrow insufficiency, pulmonary failure, veno-occlusive disease, cardiac failure, cardiac toxicity, acute myelogenous leukemia or myelodysplastic syndrome, nephrotoxicity, psychosexual disorders, and heightened vulnerability to opportunistic infections in the first year after treatment. According to some accounts, one in five women died of the treatment.19
The only study with conclusive data supporting this treatment for breast cancer was conducted by Dr. Werner Bezwoda in South Africa. When U.S. researchers duplicated Bezwoda’s procedure on six women, four of them came away with serious heart damage. For two of them the heart damage was fatal. Another died right away of breast cancer. The fourth lived, but was disabled. The research was, Bezwoda later admitted, fraudulent.20 More than 40,000 women endured an expensive, debilitating, life-threatening treatment that was a lie based on lies. Metastatic breast cancer still has no cure.