Am I a Survivor?
I was ambivalent about wearing the word survivor on my sleeve, until I put on my biking jersey for Smilow Cancer Hospital’s “Closer to Free” ride. I’m a stage-IV cancer patient, currently in treatment at Smilow—not the kind of survivor who’s cancer-free. I didn’t want to wear the label that tends to be on the winning side of the battle we make of cancer in this country. For me, battle is not a good metaphor for a fatal disease that lives and multiplies and recurs in the bodies of so many.
And yet, I didn’t want to bike along in Smilow’s annual cycling fundraiser as if I don’t have cancer. When the volunteer at the Closer to Free check-in table asked “Are you a survivor?” I said Yes. And when I zipped up the turquoise jersey with survivor written in yellow on the sleeves, I was relieved and thrilled to claim it: I’m a rider and a survivor; I’m alive with cancer.
I set out on the ride with my eye on the other “survivors.” What kinds of cancer had they had? What chemo drugs? How many days of radiation? I’m sure we would’ve had a lot of oncology shop to talk, and yet I know how diverse our experiences have been: Each cancer is wildly different, and each person’s disease is as unique as a fingerprint. Each of us was riding out—pace, posture, pedal cadence—as differently as our genes had mutated into the fast, furious growth of cells that could kill us. And yet we were all wearing survivor on our sleeves.
At the Sleeping Giant rest stop, I talked to the other survivor in line for the bathroom. We made small talk about the humidity and my squeaky brakes. Then, she said, “I noticed you’re…” gesturing towards my sleeve.
“Yes,” I said. “Is this the first time you’ve done Closer to Free?”
She did it last year, she told me. Three months after she finished chemo. “What about you?”
“I’m still in treatment,” I said. “I’m doing a clinical trial for immunotherapy.”
“My husband works for Bristol-Myers!” she told me. “He would love to meet you.”
Bristol-Meyers Squibb is one of the pharmaceutical companies developing drugs that are making breaking news and giving me a break from chemo. These new drugs unleash the immune system on tumors—an innovation so promising Science magazine named Cancer Immunotherapy 2013’s Breakthrough of the Year. Unlike chemo, which takes a toll on healthy cells while killing malignant cells, the new drugs can empower the patient’s own immune system to attack tumor cells, with more tolerable side effects. Better yet, immunotherapy can teach the immune system to fight cancer long after treatment has stopped.
I joined a Bristol-Meyers clinical trial at Yale a few months after the chemo regimen I was on stopped working. When one of the nurses noticed my bike helmet clipped to my backpack, she invited me to join the Immune Brigade, a Closer to Free team of providers and survivors involved in immunotherapy.
When the survivor I met in line for the bathroom introduced me to her husband at a water station, she said, “Ron, this is Ashley, with the squeaky brakes.” She told him I’m in one of the Bristol-Meyers studies.
“I’m in the immunotherapy clinical trial for gastric cancer,” I told them.
“Oh, I assumed it was melanoma,” the woman said. It is the astonishing responses to immunotherapy in melanoma—tumors disappearing completely or shrinking dramatically in patients who’ve exhausted other treatment options—that got the new drugs recent fast-track approval for use with advanced melanoma patients in the U.S. and Japan. Immunotherapy is now in multiple clinical trials for cancers of the kidney, lung, bladder, stomach, and many other tumor types.
“No. I have esophageal cancer,” I told the couple. It’s unclear what effect immunotherapy will have on my disease, but I’m ecstatic to be chemo-poison free, at least for the duration of the study. And to be on the cutting edge of cancer research: I’m one of 36 people in the world who’s in the Bristol-Meyer immunotherapy clinical trial for gastric cancer.
“Have you had any of the crazy side effects?” Ron asked.
“Yes. My treatment has been delayed for the past month because I have elevated liver enzymes.” He nodded, showing that he knows this is a pretty common side effect of immunotherapy. “But I haven’t felt a thing,” I said. “So far, the liver inflammation has been a-symptomatic. I’ll take immunotherapy any day over chemo.”
To try and get the liver enzymes low enough to keep giving me immunotherapy, my oncologist prescribed a high dose of Prednisone, a form of steroid. The day before the Closer to Free ride, the liver enzymes went up, and my oncologist called to tell me to increase the Prednisone dose. “Now Ashley,” he joked, knowing I was doing the ride the next day, “this is not like Lance Armstrong.”
The hardest part of the 25-mile course came after the Sleeping Giant rest stop. “Look two feet ahead of you, and see that road go flat,” one of the Closer to Free ride marshals yelled out, encouraging us up one of the steepest hills. “Remember who you’re doing this for!”
I remembered the woman standing outside Smilow at 7am with other patients and nurses to cheer us on. She was in a hospital gown, holding on to a walker and a sign that says “Thank you Riders.” When I saw her hand waving strong with life force, as we were riding by, I started to cry. “Thank you!” I yelled.
Back at the finish line, I saw my first oncologist, a young hot-shot who’d trained at Sloan Kettering, wearing a team jersey with a blue Y for Yale on the front. Beyonce’s “Survivor” came on the loudspeakers as the next wave of riders came in, and I felt kind of like I was running into an ex I’m glad I broke up with. That doctor treated me more like a prognosis than a person. I remembered the blunt way he broke the bad news on our first consultation: Your cancer is not curable. You’ll probably be on chemo for the rest of your life. The purpose of the treatment is to keep you alive as long as we can. I bet he didn’t think I’d be alive almost three years later, much less well enough to ride “Closer to Free.” I didn’t go over to say “hi.” I cheered on the riders crossing the finish line, to the tune of “Survivor.” I let Beyonce sing my good riddance to my ex doctor. (But I’m not so gracious, in this case, as the lyrics suggest: I may hate on him in the magazines. I’m compromising my Christianity: Here I am, dissing him on the internet.)
If I’d seen my current oncologist—he told me later he’d brought his kids to the moon bounce at the Finish Line Festival—I’d have run right over. Maybe we’d have joked about how the steroids helped me up the hills near Sleeping Giant.
All the jarring turns of expectation and disappointment that come along with cancer are easier with a doctor who treats me like a person who’s living with cancer. Every appointment, he takes a few minutes to ask about the refugee resettlement work I do in New Haven. He always responds with kind patience to my anxious emails about liver enzymes and Prednisone. He’s spent so much of his time and energy advocating for me, talking to a Bristol-Meyers study monitor to keep me in the clinical trial, despite my stubborn liver enzymes. He’s doing everything he can to make immunotherapy work for me.
With a tumor in my esophagus that has spread to my liver, one of my lungs, and a lymph node near my stomach, I probably won’t survive cancer. But since starting immunotherapy, with an oncologist I know is rooting for me, I can feel much of the load of cancer lifting from me. The chemo toxins are out of my body; I don’t have to stay in bed for three-day spates of dead-to-the-world nausea and fatigue. I’ve been more able to live my mom’s greatest hope: Every day she prays that God restore me to unencumbered life.
On immunotherapy, I’ve been able to step out of the Smilow infusion center into the active life I want. It’s usually when I’m unlocking my bike that I realize I’m still wearing my hospital bracelet. I rip it off, often in a rush to get to a yoga class, where I feel full of life force no matter what my pathology report says.
But I remember that woman waving the morning of the Closer to Free ride, her hospital bracelet fixed to her wrist. And I know there are Smilow inpatients who couldn’t disconnect from their IV poles long enough to come out and watch us whirl by, who aren’t as free as me to live as if they don’t have cancer. They, too, are survivors.
And yet our culture celebrates those who have “beaten” cancer; because they are living proof that we’re “winning” the War on Cancer. As happy as I am for survivors who are cured or in remission, I don’t want to contribute to the triumphal ways we talk about cancer in our culture. I don’t want the survivor on my sleeve to evoke the survival-of-the-fittest mentality that implies those who die of cancer are less fit to live than those who survive.
I know from my work with refugees, and from my experience as a cancer patient, that you can never make a clean break with whatever shattering experience gave you the title survivor. You’re never completely free of what happened. You walk with scars, and you carry the weight of what you’ve been through, even when you’ve made it to a place that seems to promise you can be free.
After doing the 25-mile Closer-to-Free ride, I’m inspired to train for the 62.5-mile course for next year. Maybe someday, I’ll shoot for the Century 100-mile course. But you can’t make plans like that when you have incurable cancer. Even if I “beat” the odds of my likely five-year survival rate, I don’t know how sick I’ll get down the road. I don’t know how many years of unencumbered life I have left. If my liver inflammation persists for much longer, I may not get to finish the immunotherapy clinical trial. I may have to go back to the old ball-n-chemo. Maybe I won’t be able to do another “Closer to Free” ride. Maybe I’ll be one of the Smilow inpatients cheering on the riders with my IV pole and hospital bracelet, waving at the survivors. Maybe I won’t be here.
But for now, every time I zip up my survivor jersey for a ride I feel closer to free, closer to that unencumbered life my mom prays for me. It’s like that thrill of coasting down a hill on a bike, that suspension of disbelief and perhaps—even if just for a moment, the laws of gravity. That alchemy of hope and exhilaration that feels as close as our bodies can to flying, cancer free.
Ashley Makar works with refugees in Connecticut. She does community outreach for IRIS--Integrated Refugee & Immigrant Services, in New Haven. She has an e-book of essays, You Were Strangers: Dispatches from Exile. Ashley has published essays in Tablet, The Birmingham News, The Struggle Continues (the Birmingham Civil Rights Institute weblog), Religion Dispatches, and The New Haven Register.