Waiting for Recurrence: Medical Uncertainty As System, As Experience

||Abigail Jane Mack||

I was diagnosed with Papillary Thyroid Cancer, Stage Two, on my 25th birthday. The news was not shocking, though I felt the ground beneath me shift profoundly. After an ultrasound and biopsy, I had a sense the diagnosis was coming. It was not a scary diagnosis. “It’s the second-best cancer you could ask for,” several doctors told me. The odds that I would be killed by this particular cancer were low. So, I learned how to joke: “I’ll be sure to recommend it next time someone’s in the market for cancer.” Six years in, I have several pithy replies for all such scenarios.

A first-year graduate student and associate instructor, I did not yet qualify for Family Medical Leave. I would have to continue my employment or relinquish my graduate position and apply again another year. It seemed silly and a shame to give up my ambitions in the face of “The Second-Best Cancer.” No. Continue teaching. Continue taking courses. Undergo surgery. Undergo radiation. The doctor told me the cancer was slow-growing. I could afford to wait until the summer, but I could not unfeel the tumor. I felt it with every swallow. Every laugh. A searing stone at the base of my throat. Six years in, I still feel sharp phantom pains. When I find myself feeling particularly vulnerable, my hand instinctually covers my throat.

 

Despite a successful surgery and an aggressive radiation treatment, results on every follow-up test have been inconclusive. There is ambiguous tissue behind the scar on my neck in the dip between my collarbones. Scar tissue most likely. Biopsies and ultrasounds have been inconclusive, but it has not grown. Promising. My blood tests return positive for a protein antibody which typically operate as the marker of cancer recurrence. In some anomalous cases, however, this antibody may stick around for many years after treatment without cancer present. I may be an anomalous case. For good measure, another radioactive scan. Nothing conclusive in the medical technician’s pointillist portrait of my body. Recurrent thyroid cancer is not “The Second-Best Cancer.” Survival rates drop significantly as time passes and cancer goes undetected. Six years in, I asked my doctor if I was in remission yet. Almost, he said, like 99% there.

What is this 1% between “almost” and remission? A few weeks ago, I had an episode brought on by the high-dosage of thyroid medication I’ve been taking preventatively. After a week or so of insomnia, I woke to find myself in a pool of sweat, shivering. My stomach ached unbearably.  My hands shook. My body felt heavy and weak. My endocrinologist adjusted my dosage. In the days after, while I waited for my thyroid levels to balance out—fatigued, tremoring, and frustrated—I confronted my almost-remission. My almost-almost cured positionality.  The ambiguity and the treatment for the ambiguity were no longer acceptable. As a consequence of the accommodations for my uncertain diagnosis, I began to feel miles away from the kind of attentive, discerning, caring person I strive to be.

In her profound collection of essays, The Cancer Journals, Audre Lorde wrote of her diagnosis of breast cancer—its initial ambiguity—and her effort to bring her experience into language as a black, lesbian feminist in the late 70s (the collection was published in 1980). Lorde writes powerfully of the treatment experience, the cancer economy, her acceptance of mortality and the struggle in everyday life to live intentioanlly. During my first reading, I emphatically marked a passage Lorde wrote a few months after her surgery:

I seem to move so much more slowly now these days. It is as if I cannot do the simplest thing, as if nothing at all is done without a decision, and every decision is so crucial. Yet I feel strong and able in general, and only sometimes do I touch that battered place where I am totally inadequate to anything I most wish to accomplish. To put it another way, I feel always tender in the wrong places.[1]

At the time, Lorde’s Cancer Journals was a critical break in the silence about the breast cancer.  Such silence is a tool for separation, Lorde wrote, emphasizing instead the potential for radical unity in the face of cancer. And, though I do not have breast cancer, I found myself tapping into this unity as I read. I felt too, an intimate connection to Lorde’s own experience of medical uncertainty: “Sometimes fear stalks me like another malignancy, sapping energy and power and attention from my work. A cold becomes sinister; a cough, lung cancer; a bruise leukemia.”[2] Mortality powerfully haunts us all in its ever-present uncertainty.

Yet, Lorde is also explicit about the ways her identity as a black, lesbian feminist informs how she understands and lives the embodiment, treatment, and political ramifications of breast cancer. Researchers have shown us again and again the extensive racial disparities in access to care, appropriate medication in the US.[3] We might ask how medical uncertainty in diagnosis is a product of the culture in which it occurs. What can we learn, then, when we consider the societal function of medical uncertainty, it’s emergence and its mitigation?

Writing around the same time in the late 70s, early 80s, bioethicist and sociologist, Renée C. Fox, described the “evolution of medical uncertainty.”  A career retrospective, Fox’s essay charts her research on uncertainty from her work in the 50s with mentor Talcott Parsons to her work in Belgium, Zaire and her eventual return to research in the US. Through her early work, Fox discovered that medical uncertainty (ambiguity about diagnosis in particular) was intimately linked to both the doctor and patient’s efforts to make illness experience meaningful. For both parties, the experience of medical uncertainty was morally and emotionally fraught. Her work abroad taught her that uncertainty and medical uncertainty in particular are intimately linked to culturally informed ideologies from individualism and social reciprocity to economic trends to values about the quality of life and death.[4] We should add to Fox’s list ideologies of race, gender, and class which undergird social interaction. Uncertainty becomes more pressing as a logic for diagnosis as it is elaborated between doctor and patient, doctor and society, patient and society. Finally, Fox’s return to research in the US showed her how the iterations of uncertainty—how it is described, felt, performed—change over time. Compared to her studies in the 50s, medical uncertainty of the 70s had become far more elaborated. As medical technology developed, research ethics were reformed and public awareness of the fallibility of medical knowledge increased, more uncertainties and risks have emerged, diagnosis has become more precarious. Uncertainty about uncertainty, a “boundless irresolution” and the preoccupation with this uncertainty lead to a finer grained articulation of risk. This is not without its ethical consequences, Fox notes, as doctors and patients are left to grapple with the moral, emotional, and social contingencies of increasingly certain medical uncertainty while they elaborate a treatment plan.

Thirty-eight years after Lorde and Fox, how do we talk about cancer experience and medical uncertainty? The literature has proliferated. This March, as I was grappling with my absent thyroid, Dr. Adam Stern published, “Onco-Anxiety: Wondering if Each Twinge or Pang Means Cancer is Back,” a personal commentary for a local public radio station. The article resonated powerfully with many, evidenced by its circulation on cancer forums and enthusiastic commentary. In Stern’s commentary, we see echoes of Lorde’s work and some of the consequences of uncertainty which Fox so eloquently described. Here, the experience of uncertainty is pathologized as “onco-anxiety.” The naming of this uncertainty restricts it to the individual encounter with fatal illness, distinguishing it from our many other forms of existential angst and dread. The naming is powerful.

In the 18 months before his death, Ludwig Wittgenstein wrote a series of notes later compiled into an essay called “On Certainty.” Despite such epistemological claims to an external world as “here is one hand,” Wittgenstein writes that doubt remains. Propositional statements and claims to fact serve as a medium through which we can orient to the other, ground each other in a shared language. It is only when such statements are contextualized and shared in this way that we can begin to doubt them without experiencing our lifeworlds collapse into doubt.  Certainty is a “tone of voice,” he writes provocatively. We may identify certainty and uncertainty as moods through which we ground our experience in the world or else experience the shifting of such grounds beneath us. It seems no wonder to me that these were the concerns Wittgenstein addressed as his final work. In my own life, I am learning to choose some uncertainties—the possibility of cancer recurrence—over others—the questionable efficacy of some medical treatment. Six years in, I am becoming comfortable with the shifting grounds.

[1] Lorde, Audre (1997 [1980]) The Cancer Journals: Special Edition. Aunte Lute Books: San Francisco, pp 40.

[2] Ibid, pp. 17.

[3] See for instance: Anderson, Karen O., Green, Carmen R. and Richard Payne (2009) “Racial and Ethnic Disparities in Pain: Causes and Consequences of Unequal Care.” The Journal of Pain. 10(12).

[4] Fox, Renée C. (1980) “The Evolution of Medical Uncertainty” Health and Society, 58 (1), pp.

One Comment Add yours

  1. Wow a very excellent article!!! Learning to live with uncertainty takes a leap of faith. It means taking one day at a time. This is what I tell my Hospice patients as we are all only promised one day. . ..and then we get another….and then another …..I am trying to remember to be grateful each morning I awaken. It’s hard to be brave sometimes though in the face of adversity because fear of the unknown is real….I’m still learning.🌹

    Like

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