Why I Stopped Being A “Good” Cancer Patient

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Written By Robby Macaay

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“You are allergic to your oral chemotherapy,” explains my oncology team at a recent appointment. “We are going to try a newer drug,” I am on my fourth attempt to find an oral treatment suitable for both my body and my cancer, so that I can maintain a remission that took three years and a stem cell transplant to achieve. “We want to get ahead of it before it gets ahead of us.” In my headphones, Weezer achingly croons, “Say it ain’t so, your drug is a heartbreaker.”

Since being diagnosed with phase three chronic myeloid leukemia in 2017, finding oral chemotherapy that my body agrees with has been a turbulent experience. While these targeted therapies are often considered a more humane method of leukemia treatment, they have almost always brutally interrupted my life. From bouts of nerve pain lacerating through my limbs, leaving me agonized and frozen in place for days on end, to medically induced pulmonary hypertension, to muscle spasms knocking heavily against old bone marrow biopsy sites making daily tasks feel near impossible, every new prescription almost always felt like my cancer and my body were teaming up to say, “Nice try, but absolutely not.”

In 2020, thinking I had discovered an “out,” I believed a stem cell transplant could cast out my cancer permanently. To be worthy of such a “blessing,” I fashioned myself into the perfect patient: tracking symptoms, pouring hours into meticulous research, maintaining “positivity” through chemotherapy and radiation, performing physical therapy, becoming a solitary island to avoid COVID-19, and jumping through exhaustive hoops to “move on” from the terrible thing inside me.

Three years after a transplant, I am still here, four failed oral chemotherapies later, standing before the gaping mouth of a familiar hell, being handed yet another drug, so “all the good work” of the last six years will not go undone. No one treating me considers what it means to actually live through all this. It is easy to prescribe a drug because the enemy is always cancer. In their eyes, if I say “no” to treatment, I am saying “yes” to dying; I am saying “yes” to the enemy in my blood.

In her seminal bookIllness as Metaphor, Susan Sontag notes that we have historically witnessed the polemical function of cancer to describe what is diabolical. From the “war on cancer,” equating cancer treatment to a “battle” intended to pulverize “invasive” cells, to Trotsky calling Stalinism “the cancer of Marxism,” to John Dean explaining Watergate to Nixon as a “cancer within close range” when discussing the presidency, the disease has been a means of invoking anger, disgust, and paranoia. It has been a means to contextualize what is evil and in need of extermination.

When musicians such as Hozier sing, “When that part of you was ripped away, a grip taking hold, like a cancer that grows… I know my heart would break,” cancer is the agent of despair. When bands like Rage Against the Machine belt, “The rungs torn from the ladder, can’t reach the tumor, one god, one market, one truth, one consumer,” cancer is the barometer of capitalism Cancer remains a vacuous abyss. Yet this mystification continues to obscure the realities felt most by patients—that its metaphors inform our experiences and there is little thought of how we, as patients, wish to live with dignity and illness.

Because of the societal implications that accompany cancer, I subconsciously regarded myself as a bad person. I viewed my diagnosis at 23 years old as a rightful karmic debt, or a curse from a God who was choosing to forsake me. On Instagram, a stranger sent me a message implying I had to be “so hateful” to have such a lethal illness residing in my bones. Leukemia ushered in a host of thoughtless comments where family and strangers alike mourned my existence even though I was—and am—very much alive. Over a phone call, my estranged grandmother laments, “We had such high hopes for you. Now look at you,” implying my cancer had made me a lost cause. It became clear to me that if I wanted to be treated with a shred of empathy by anyone around me, I would have to completelyembody the antithesis of every negative stereotype people maintained about cancer. In their eyes, if I performed goodness almost to the point of being a caricature, my virtuousness meant I deserved to live.

As a fat, Black, queer, non-binary person, I have never been afforded romanticism. But cancer quickly made me into a one-person circus, foregoing my own identity, emotions, and fears to embody the complete opposite of whatever negative implications illness carves into everyone’s psyche. Cancer patients, especially Black patients, have to navigate a healthcare system where we are demanded to perform being a “good patient” in order to receive proper treatment. I have been forced to code-switch to sound white, or fragile, or non-threatening. On days my fatigue and chronic pain have felt unbearable and surreal, I have had to cast myself as kind because my symptoms alone did not make me human enough. I have overcompensated by appealing to the moral sensibility of medical professionals in order to be taken seriously; for my loved ones not to be disgusted by my illness and by association, me. To echo Sontag, “Nothing is more punitive than to give a disease a meaning, that meaning invariably being a moralistic one.” Cancer has become such a universal touchstone, that nearly everyone has been impacted by it, but almost no one knows how to confront it wholly and humanely. 

Particularly in the U.S., we live in a society that benefits from reducing the complexity of illness to the false notion that health is a personal responsibility. It casts a shadow, deflecting us from confronting the sociopolitical realities that genuinely contribute to the health, livelihood, and treatment of not only cancer patients, but sick and disabled people as a whole. And to confront this reality head on, it is important to consider how the medical industrial complex, which every cancer patient navigates, has swelled in size because its foundation is built upon centuries worth of experimentation, murder, and exploitation of Black people.

Read More: U.S. Medical Schools Are Struggling to Overcome Centuries of Racism in Health Care

Medical ethicist Harriet A. Washington’s book, Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present, illuminates health as a function of oppression. There is a historical precedence for this: In the 19th century, doctors like Samuel Cartwright pathologized enslaved Africans’ rightful desire to escape bondage into psychological disorders like “drapetomania” to justify slavery as a corrective necessity, enacted by plantation owners for Black people’s well-being. Since then, health has remained at the helm of a political strategy to oppress marginalized communities through the continual, intentional falsification of data. Consider the Tuskegee Study, the U.S. Public Health Service’s attempt to “prove” Black people were a “syphilis-soaked race” by withholding treatment. Consider, too, that “…between 1992 and 1997, New York City’s New York State Psychiatric Institute (NYSPI) and Columbia University’s Lowenstein Center for the Study and Prevention of Childhood Disruptive Behavior Disorders conducted research studies that sought to establish a link between genetics and violence.” These predatory studies were conducted in an ultimately fruitless effort to correlate young Black and Brown boys with extraordinary violence–coincidentally at the same time as Joe Biden’s introduction of the Crime Bill in 1994.

This intentionally subversive propaganda has always pitted Black people at odds with a mythological notion of “health,” further fueling racist malpractice, negligence, and violence by the medical industry. The tangible outcomes are evidenced in statistics like the maternal mortality rates of Black women being “2.6 times higher than those of white women,” according to a CDC study in 2021, or COVID-19 infection rates, estimating that “…in the U.S., Black people were 3.57 times more likely to die from COVID-19 than white people.” The outcomes of this egregious disregard have also manifested in my life: In 2017, I stumbled into a Los Angeles emergency department, unable to walk without assistance, with symptoms like vertigo, bruising, a distended spleen, and compromised vision, and I was nearly denied care because I “looked like a drug addict.” In actuality, my veins were inflating with 666,000 cancerous white blood cells.

I admit surviving cancer has not been a dignified process. Frantically attempting to live in “goodness,” I felt as though I was Icarus falling to the bottom of an ocean. I believed that if I, alone, did everything “right”—managing my medications and treatment plan without assistance, assigning a “greater purpose” to my diagnosis, turning the meaning of life into a frenetic ode to productivity and workaholism, and ignoring serious warning signs of physical, mental, and emotional burnout—then I would achieve health as a reward: a “well-earned” invincibility. Now, I have a grounded clarity that I, and other cancer patients, have consistently been failed by negligent,willfully violent systems that demand a culture of silence and spectacle-making of survivorship.

I am no longer interested in self-blame as self-empowerment. I am interested in naming what the powers that be refuse to address that, as disability activist Patty Berne wrote in her working draft manifesto Disability Justice, “we are in a global system that is incompatible with life.” Illness does not render me invalid or worthless, nor should I be denied understanding and self-determination. I refuse to live up to standards where I must barter all my self-regard for the bare minimum. I can no longer force myself to overlook larger systems playing critical roles in intentionally failing, neglecting, and impacting our health and our communities.

At the follow-up to my recent appointment, I relay to my oncology team that, at this moment, I have no interest in treatment. At this moment, it is a measured risk I am willing to take in order to buy some moments of repose. Call me hysterical, but I am incredibly lucid as I enter an autonomous wilderness of finding adequate support in all parts of my life and embracing interdependence. Call me the bad patient who listens to my body, who knows on a cellular level, I require a sabbatical from an industry mainly invested in profit over livelihood. I do not have a death wish; I want to live—just not like this. Embracing life with cancer and other disabilities does not mean I must forgo myself. If that means my leftover cancer cells become more resilient, if that means undoing all that “good work,” well, it was “good work” that was done unsustainably.

I am a cautionary tale, if you will, but being a cautionary tale does not make me a lost cause. I did not just believe myself to be a star, like Icarus; I am one, and fatigued, asking neighboring constellations for a burst of light. If I do fail, then I fail, but know that none of it is failure to me. It is not a war waged against me; I did not beckon some wake of vultures: cancer is an illness, and my body is just a body. There is no meaning. There is no metaphor.

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