by Suleika Jaouad
It was the annual fund-raising event for the Hope Lodge, my temporary home after a bone marrow transplant. The host asked all the survivors to step forward from the crowd. I froze. I didn’t know if that word applied to me. What does it mean to be a survivor? I certainly didn’t feel like one. Not yet, anyway.
The first time anyone used the word survivor in reference to me, I had just been admitted to the bone marrow transplant unit of Memorial Sloan-Kettering Cancer Center. A nurse came into my hospital room to review the transplant calendar with me. The transplant had been looming on the horizon ever since my diagnosis with leukemia in May 2011. The nurse briefed me on the sequence of events: intensive chemotherapy followed by the transplant, and then a four-to-six-week hospitalization. I noticed something on the calendar that I hadn’t seen before.
“What’s that?” I asked her, pointing to a meeting scheduled for three months out. The box on the calendar was marked Survivorship Meeting. She explained that it was an orientation for patients navigating the world after a transplant. At first, I felt uncomfortable and then a little angry to see that the meeting was planned for three months away. It may as well have been set for 2015. It was hard to imagine ever getting there. As I tried to prepare for a life-threatening transplant to treat my life-threatening disease, I wondered if I would survive to attend the survivorship meeting.
In the cancer world, the term survivor is as ubiquitous as it is hard to define. Some cancer patients I’ve talked to feel that it’s too much territory to cover for a single word — every cancer patient has a different diagnosis, a different prognosis.
“I loathe the term,” a Twitter acquaintance wrote to me. “It’s either exclusionary or overly broad. So I don’t define it, I avoid it.”
A lot of cancer patients I know maintain that you become a survivor the day you are handed a cancer diagnosis. As one friend put it bluntly, “A cancer survivor would be someone who a) has cancer and b) is not dead.” And still others define survivorship as crossing the finish line to remission or a cure.
While I wasn’t opposed to the word itself, calling myself a survivor before knowing if the transplant had been successful felt like I was prematurely declaring this mission accomplished. I even felt a little bit superstitious about it. The word survivor felt like a grown-up word — more fitting for people who had lived with cancer longer than I had, or who had made it through a big operation or milestone in their treatment. Sitting with my nurse in the hospital room, one week before my transplant, the survivorship meeting stood alone on the calendar, surrounded by empty white boxes.
Almost three months later, on a balmy June evening at the Hope Lodge, a halfway house sponsored by the American Cancer Society in Midtown Manhattan, I was standing in a group of fellow cancer patients and the host was calling all survivors to the stage. The night was a celebration of Relay for Life, the society’s big annual fund-raising event. It was more crowded than I’d ever seen the place. The sixth-floor common area, usually the low-key meeting place for Zen meditation sessions or cooking classes for Hope Lodge residents, had been transformed into a party hall. The expansive room was teeming with well-wishers and fellow cancer patients, families and volunteers. There were tables of catered food, balloons and streamers, and music that was a little too loud. A former Iron Chef contestant with bleach-blond hair was grilling hamburgers out on the terrace.
Volunteers passed out purple T-shirts to the people making their way to the stage — each shirt had the word Survivor in bold lettering across the back. I turned to my friend Chris, my hall-mate at the Hope Lodge. He was already a few steps ahead as I stood where I was. “Come on,” he said, “that means us.” Chris learned that he had incurable brain cancer seven years ago. Although he will never go into remission, he considers himself a survivor. “One day at a time,” he tells me.
It was time for the main event of the night — the Survivors’ Lap. The crowd of purple shirts set out along a makeshift pathway lined on each side with luminarias, candles dedicated to cancer patients. Along the pathway, people cheered us on, cameras in hand. There were a lot of tears, some through smiles. For the first time since my diagnosis, I felt a sense of elation and accomplishment as I reflected on all that I had survived in the past year — all that we, as a community, had made it through.
Today, it’s been 92 days since my transplant. While my doctors say that my recovery from the transplant is going as well as can be, the threat of relapse is never far from my mind. In two weeks I will return to the hospital for the survivorship meeting. I’m still anxious about calling myself a survivor, but I’m unbelievably grateful to have survived my transplant. I’m still here. And that means I can continue to figure out what surviving means to me.
July 12, 2012
Suleika has written about her life as a young leukemia patient in The New York Times Well section. Her essays are called Life, Interrupted.