With a Catholic mother and a Muslim father, I’ve always had a great interest in religion, but I’ve never practiced one myself. After I received a diagnosis of an aggressive form of leukemia at the age of 22, I put my faith in medicine.
During my first cycle of induction chemotherapy I did what I’ve always done best: I studied. Growing up, I had always been an avid bookworm and a straight-A student. I approached my cancer the same way I approached writing my senior thesis in college: I buried my head in research journals, interviewed experts and scoured the Internet for information. As they say, knowledge is power. And I believed that the more I could learn about my disease, the greater my chances of survival.
Two and half years later, I realized how naïve I was. Knowledge, I’ve learned, has its limits.
Back in 2011, after four weeks in isolation in the oncology ward at a New York City hospital, my doctors had bad news: not only had the standard treatments not worked, but my cancer seemed to have become more aggressive. Despite the chemotherapy, I was going into bone marrow failure. My immune system was no longer functioning, and my body could not produce blood products on its own, leaving me dependent on blood transfusions. At the age of 22, I began to consider my own mortality. It had never occurred to me that, with all of the progress that has been made in cancer research, none of the standard treatments would work for me.
That’s when I learned about something called a clinical trial.
When my doctors first recommended I enroll in an experimental clinical trial, which involved a combination of two chemotherapy drugs that I had never heard of, I was skeptical. Well, to be perfectly honest, I was terrified. In my mind, clinical trials were only for the terminally ill — a last resort option, a shot in the dark. The words “experimental” and “trial” conjured up images of mad scientists and guinea pigs.
In reality, a clinical trial is not an “experiment” in the classic sense. In the world of medicine, a trial refers to clinical research that follows a predefined plan or protocol. A clinical trial must comply with strict health, safety and ethical regulations determined by the Food and Drug Administration. There are three different phases to a clinical trial. Phase 1 trials are the first test of a treatment on humans to determine if it’s safe. Phase 2 trials focus on whether a treatment is effective. And Phase 3 is the final test before F.D.A. approval to determine if a treatment has advantages over the standard treatments available.
My doctors recommended a Phase 2 trial, meaning it was not yet known whether the new chemotherapy combination was even effective, let alone better than the standard of care. At a time when everything seemed so uncertain, I craved hard facts, statistics and proof that my cancer treatments were worth the havoc they wreaked on my mental and physical health. The last thing I wanted was to become one of those guinea pigs. I wanted a cure, not a trial.
Suddenly, I found myself faced with a leap of faith that wasn’t based on religion, but it felt deeply spiritual anyway. No treatment had worked so far, so how could I be sure that this one would? My doctors had no certain answers for me. After a few sleepless nights, I hesitantly agreed to try it. After all, I had very few other options left, and the longer I waited, the slimmer my options might become.
The clinical trial tested my faith each step of the way. The combination of chemotherapy drugs weakened my immune system to dangerous levels. I spent countless nights in the emergency room with surging fevers that worried my doctors, and I was hospitalized with life-threatening complications ranging from septic shock to a risky infection with Clostridium difficile.
But after six months, the regimen had done its job, reducing my “blast count” to a safe level for a bone-marrow transplant. Last spring I had that transplant, with my brother as my donor. And today, I’m very lucky to be able to say I’m cancer-free.
I still don’t pray or attend church or consider myself religious. But I have a different kind of faith now — a faith in my incredible team of doctors, in the strength of my body and in the power of scientific research.
But I’m still left with a lot of questions. Why did my good friend Anjali, who was also young and had the same disease, not respond to the treatments that saved my life? Part of the answer has to do with science. But the other part is a mystery. And even if I don’t practice a formal religion, I spend a lot of time thinking about why I’m still here.
The New York Times WELL
Suleika Jaouad (pronounced su-LAKE-uh ja-WAD) is a 24-year-old writer who lives in New York City. Her column, “Life, Interrupted,” chronicling her experiences as a young adult with cancer, appears regularly on Well. Follow @suleikajaouad on Twitter.