Hope on Trial

Sarah Roth //

My parents shared a broad, brown desk in their home office. In the years of my mother’s struggle with ovarian cancer, a foot of papers, envelopes, and printouts were stacked on the desk, documenting clinical trials for which she might be eligible. For a time, the desk, with its thick layer of paraphernalia, became the center of their world: after four lines of chemotherapy punctuated by remissions, imaging scans had found cancer resting against my mother’s liver and spiraling within her abdomen in diffuse vines. With no next line of treatment, my parents were in need of hope. My mother scheduled calls with clinician investigators at M.D. Anderson Cancer Center, Sloan Kettering, Johns Hopkins, Mount Sinai, Abramson Cancer Center, and elsewhere. She spoke with any principal investigator who would speak with her. An oncologist at Johns Hopkins, without a trial to offer, suggested she “hit the cancer with a very big stick.” My mother and her cancer were placed on an array of waiting lists. She called and called again. She considered where she and my father might move, considered selling the house. An Excel spreadsheet of trials grew. She began to carry a small whiteboard in her purse. 

Eventually, my mother was approved for a clinical trial at a small cancer center in the Orlando suburbs. This trial, for women with recurrent ovarian cancer, delivered a genetically modified form of smallpox virus to the site of the disease. After a month of battling the modified virus, the body’s immune system would be strengthened. Meanwhile, the body would become ill, with a fever, chills, and assorted signs of sickness. Participants would then be scheduled to begin chemotherapy. After their bout with the modified virus, their bodies would be fortified, prepared to take on the cancer with renewed vigor. “Superhuman,” my father said, as he picked me up from the airport. “I’m feeling really good about this.” We drove through Orlando into Winter Park, passing suburban developments and palm trees, a vast landscape of Disney theme parks and strip clubs. I brought along a book, Beth Murray’s Cancer Angel, to keep me company.

Belladonna Press (2015)

Beth Murray was a poet who wrote of her experience with inflammatory breast cancer in a collection of contemplative pieces. The poems form a therapeutic arc and are divided into four sections: “Vile,” “Beacon,” “Cancer Angel,” and “Shoots.” Murray writes: “tumors too can be circles / the path into curiosity, to ask / who are you? / sit quietly for what arises, / when the recesses of the mind pop up, / there is a trembling in the bones in these moments / draw attention to this spot so that / other wayfarers know to / stop here.” Having begun the book on the plane, I thought about these words as we approached the hotel where my parents would stay in the days of the surgery, and where they would stay when they returned to begin treatment the following week. The tumor as a path into curiosity. A path into who are you. The arising as a quiet, not just the quiet of malignancy gone undetected, but the quiet of something placid. Cancer Angel, like so many collections written on illness experience, was published posthumously. My father and I got to the hotel parking lot and stopped the car.  

“Remember this dream my mother had when I was young,” Murray writes. “There is a mountain, you part it and walk through.”

*

The Florida Cancer Center was founded by Seventh-Day Adventists. There are psalms on the walls of the surgical waiting room. “My Peace I Give You” is typed in bright gold lettering beyond a stack of blankets. “John 14:27.” In the corridors outside, the walls are decorated with paintings of Jesus with sheep, Jesus with babies, photographs of palm trees set against open skies. My mother’s surgeon, a redheaded man with a slight southern accent, approached the doorway. My father and I rose out of our cushy waiting room chairs to greet him. “I haven’t had an easy patient in a long time,” he said, fingering his brow. “For once, the whole team could breathe easy.” In other words, there were no major complications. We sat back down to wait. My sister called us from Miami to check in. She and my father spoke in low medical murmurs to one another. “Hyperkalemia,” my father whispered into the phone. “Alkalosis.” 

My mother was drowsy when we met her in the Rapid In & Out Department, but she was full of words. She told me the story of a ring my father gave her for an anniversary. She asked me what I would eat for lunch and listed the items she would like to eat today: butternut squash soup, chicken noodle soup, chicken, vegetable soup. I helped her pull on her sweater, arranged a headband in her hair. She had the hiccups, which were both sweet and dangerous, and they echoed through the ward. With each hiccup, my mother clasped her abdomen; the site of her surgery was raw and inflamed. She sipped on water until the hiccups subsided, but they kept returning. Every so often, a nurse peeked behind our curtain. “Wanted to make sure nobody was retching,” she said. My mother explained the hiccups. “Oh,” the nurse said. “How cute.” 

When she was ready, a wheelchair was brought in. We made our way to the car and to recovery beyond the hospital. 

In the hotel room, my mother rested on the couch, her knees curved over a pillow. I looked through the menus of nearby restaurants, searching for vegetable soups. She asked, eyes glassy, arms wide, how much time I had left in graduate school, and I laughed. She told me to schedule an appointment with an oncologist to manage my own risk of cancer. My father showed us a YouTube video of a young woman playing the ukulele. We played backgammon. As I sat on the couch with my mother, my father quietly receded into the backdrop. I went for a walk and returned to find he had fallen asleep. 

As my family descended into this clinical trial, hope took on strange forms in our discussions of the future. Sitting in the hotel room together, our toes touching, my mother said, “Your dad is really hopeful about this.” She gestured to the hopes of others – my father, her siblings, and even my sister and I – but something shifted on the horizon of her own experience: her personal sense of optimism became muted. As we sat together in the car, my father folded his hope into the language of statistics and information. “They’ve done it on seven people. The data isn’t out yet, but I think the odds are good.” How were these forms of hope constituted, and how did they circulate through our medical and familial relationships? This question haunted me: it moved through my nascent anthropological research questions, churning, and it nestled in the heart of my family. 

here in the chest who will instruct? / in the branches who will locate motions? / however swift or slow, several wheels turning trust / brass instruments blowing luck, / strings plucking faith have / inherited terrible violence around which numbness injects unnoticed—

In the midst of recurrence after four lines of chemotherapy, my parents searched exhaustively for a clinical trial that might have better “odds.” They came upon and enrolled in this trial, and, meanwhile, the work of hoping shifted from my mother to all of us who cared for her. This hope was not static or easily located, a “promise” that contraposed “evidence from clinical trials” or the “lived realities” of illness and clinical practice (Aronowitz, 2007). Rather, it moved through the fabric of our relations, carried through gestures and labors of clinical and familial care. It felt dangerous to keep a spark of hope alive. At the same time, it animated us. It flickered.

Several days after the surgery, my parents returned to Winter Park to begin the immune therapy phase of the clinical trial. My sister drove up from medical school in Miami to join them. This time, I was far away, back in graduate school across the country. “We’re hopeful,” my mother said over the phone. “But I wish I had more time to recover from the surgery.” She was tired and still in pain. But it began, this trial, and the four of us were brought into its strange milieu. She received an infusion of smallpox virus through the recently installed catheter in her abdomen. The days that followed were full and complicated. I received these days from afar, in slivers and folded into platitudes. My sister told me that she fed my mother soup by the spoonful. “She needs to gain weight,” she said. “She’s so small.” My sister told me that she changed the cold washcloths as my mother’s fever rose and fell, responded as my mother asked after visions: fish on the walls, curtains that speak. “I’m glad you aren’t here for this,” she said.

Inside the body, the smallpox virus was targeting cancer cells, or at least cells that were replicating quickly. The virus infected these cells, replicating even more quickly until these cells lysed, or burst. Oncolytic virotherapy. Meanwhile, the immune system responded aggressively, inflaming and retaining to fight the virus and the lysis. My sister told me that my mother was bloating with water and histamine. “It’s from the pain,” she said plainly. She described a pathway, a protein that ceases to regulate when the body experiences too much pain. The weeks followed in a slow succession of cold compresses and small spoonfuls of soup. We shared these weeks in glimmers. When my sister was home, she called to tell me how my parents were doing. My mother was fragile or asleep. She couldn’t take pain relievers for fear of reducing her immune response. When she had recovered enough to speak, she told me she had traded a piece of life for the possibility of more. 

“I’m wrung out,” she said. 

*

“Tumor-mountain,” Murray writes:

that had said impossible size, tumor-mountain inoperable / smoke diminished / and so I think of cutting… / looking for a doctor who will cut / Media, the middle coat of a wall of a wall of blood or lymph / the middle way

Murray writes of cancer as an index of movement, a descent into an experience. There is no narrative of a return to a healthy body or move into survivorship. As Murray writes, “the feeling of feeling is not the story of what happened.” Instead, there are objects – vials of vile red liquid, a cactus that blooms at night – and there are voices. In one thread that moves through these poems like a chant, Murray gives voice to her cancer: “The tumors are a voice speaking / the message of their own dissolving.” The tumor is often nurturing: tumor saysI grow here to make bigger this is a refrain that recurs throughout the text. What it grows to make differs from poem to poem. In “Tightening,” a poem in which loss shows Murray’s narrator that “we require another,” tumor says, when loved ones are troubled / I grow as breast to nurture them. In “Hawk,” where Murray envisions an experience of flight, tumor says, I grow here to make bigger / this shocked part. Her tumor speaks in tension with the veins, which say, don’t trust, don’t trust, and in synchrony with the heart, which says, believe, and in concert with the nerves, which say, I hold you close to me

In “Cut,” a poem midway through Cancer Angel, Murray’s narrator imagines reckoning with a tumor through a sequence of divisions. She writes of a dream her mother once had, in which she, the daughter, parts and walks through a mountain. She writes of cutting as the excision of “unhelpful thoughts,” a suggestion to cut given by a Sensei. She writes of surgeons’ cuts through breasts “in the 80s,” when radical mastectomy “was the norm.” She writes of experiencing surgery as a carving, a curving through, a mass of land as part of a journey. “Show a way through the mountain,” Murray writes. “Let me tunnel through to the other side… let all my cells agree, let lymph and blood say / we trust.” She writes of cutting through an inheritance: “Cut away generations of pain.” Here, cutting is fine and it is oblique, it is a matter of history and it is a matter of Murray’s particular body. “Make trouble,” she writes, in the voice of her deceased brother, “saying what I already know.”

make trouble for the one signing red vile orders

make trouble for those who expect two perfect breasts

Medicine courses through the text in the form of Adriamycin, the “vile red liquid” Murray is first prescribed for her cancer. Her conversations with the distributed voices of her body, too, emerge in a form of therapy called “Constellations.” One form of treatment is fluid, and the other is sound. Each work to create a “breaking open” of the body and language, a bursting of “the larvae of the new state,” a “breaking out of the scar formed.” In this new state, the liquids of the vial, mixed with the body, are imagined to become the liquids of nectar and rain. “Spine           away such        rain      blooms,” she writes. “Catheter in the center of the cactus blossom stem / snaked up and blossom stem sought water / showed catheter vital source— / draw in, you who come— / … you come verdant in the trees.” 

*

I remember the scene clearly, as if it were just last week: my mother, my sister, and I stand in the kitchen together, chopping onions. My mother has regained enough strength to walk. Her cane rests in the corner of her closet. My sister directs us from one step to the next as she prepares a dish. As she browses through the cabinets to find an ingredient, my mother looks at us. She says she’s expected to return to Winter Park soon. She will have a series of scans and begin a new round of chemo. She tells us, eyes welling, that she doesn’t want to continue the trial. “What do you think?” she asks. In school, I am reading articles on medicalization, and I say that some scholars would say she could challenge the pressures of medicine. She should stop when she wants to stop. 

“I don’t want to be medicalized,” she says. “I want my life back.” 

*

In Cancer Angel, Murray chronicles her decision to stop her course of chemotherapy. Instead, she turns to homeopathy, which she herself has been trained to provide. “Father Medicine believes he’s only medicine,” she writes, “will not look at Mother Medicine, / they divorced a long time ago / so I must be my own mother in medicine.” As she proceeds, she imagines it is the work of sound taking over, the voices of her body telling her what they want and need. She creates a world from a descent into the language of her body: a new form of medicine. “When one day I said ‘no more chemo’,” she writes, a doctor “would never understand sitting tumor down for a talk / asking tumor what it wanted / why tumor had to / make bigger the breast / the thread, the sacrifice, the fortifying to protect.” As she lets her cancer grow, breaking open the seams of her surgical scars, Murray’s body gives voice to her poetry. She writes of her veins like cacti, silicone implants changing shape like the moon, and the growing night around her like a velvet muzzle.  

*

My parents meet with my mother’s oncologist, a lean man in his fifties. His office, nestled among strip malls, is filled with afternoon light. With a gentle smile, he suggests my mother continue with the trial. It is her best hope, he tells them. She doesn’t change her mind: she wants her life back. But she also doesn’t change course. 

*

when body says it has had enough vile

when body says [ ] no more

when body says [ ] there will be a way

*

References

Aronowitz, Robert. Risky Medicine: Our Quest to Cure Fear and Uncertainty. Chicago, IL: University of Chicago Press, 2015. 

Murray, Beth. Cancer Angel. Brooklyn, NY: Belladonna Press, 2015.

Banner image is a photograph taken by the author at the National Cancer Institute in Mexico City, Mexico. Aug. 2019. Embedded image is a photograph taken by the author in a waiting room in Winter Park, FL. Nov. 2018.

One Comment Add yours

  1. sandra buechler says:

    Wow! so powerful. I loved it.

    Like

Leave a Reply to sandra buechler Cancel reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s