Life, Interrupted
Suleika Jaouad writes about her experiences as a young adult with cancer.
There are a lot of things about having cancer in your 20s that feel absurd. One of those instances was when I found myself calling my brother Adam on Skype while he was studying abroad in Argentina to tell him that I had just been diagnosed with leukemia and that — no pressure — he was my only hope for a cure.
Today, my brother and I share almost identical DNA, the result of a successful bone marrow transplant I had last April using his healthy stem cells. But Adam and I couldn’t be more different. Like a lot of siblings, we got along swimmingly at one moment and were in each other’s hair the next. My younger brother by two years, he said I was a bossy older sister. I, of course, thought I knew best for my little brother and wanted him to see the world how I did. My brother is quieter, more reflective. I’m a chronic social butterfly who is probably a bit too impulsive and self-serious. I dreamed of dancing in the New York City Ballet, and he imagined himself playing in the N.B.A. While the sounds of the rapper Mos Def blared from Adam’s room growing up, I practiced for concerto competitions. Friends joked that one of us had to be adopted. We even look different, some people say. But really, we’re just siblings like any other.
When I was diagnosed with cancer at age 22, I learned just how much cancer affects families when it affects individuals. My doctors informed me that I had a high-risk form of leukemia and that a bone marrow transplant was my only shot at a cure. ‘Did I have any siblings?’ the doctors asked immediately. That would be my best chance to find a bone marrow match. Suddenly, everyone in our family was leaning on the little brother. He was in his last semester of college, and while his friends were applying to jobs and partying the final weeks of the school year away, he was soon shuttling from upstate New York to New York City for appointments with the transplant doctors.
I’d heard of organ transplants before, but what was a bone marrow transplant? The extent of my knowledge about bone marrow came from French cuisine: the fancy dish occasionally served with a side of toasted baguette.
Jokes aside, I learned that cancer patients become quick studies in the human body and how cancer treatment works. The thought of going through a bone marrow transplant, which in my case called for a life-threatening dose of chemotherapy followed by a total replacement of my body’s bone marrow, was scary enough. But then I learned that finding a donor can be the scariest part of all.
It turns out that not all transplants are created equal. Without a match, the path to a cure becomes much less certain, in many cases even impossible. This is particularly true for minorities and people from mixed ethnic backgrounds, groups that are severely underrepresented in bone marrow registries. As a first generation American, the child of a Swiss mother and Tunisian father, I suddenly found myself in a scary place. My doctors worried that a global, harried search for a bone marrow match would delay critical treatment for my fast-moving leukemia.
That meant that my younger brother was my best hope — but my doctors were careful to measure hope with reality. Siblings are the best chance for a match, but a match only happens about 25 percent of the time.
To our relief, results showed that my brother was a perfect match: a 10-out-of-10 on the donor scale. It was only then that it struck me how lucky I had been. Doctors never said it this way, but without a match, my chances of living through the next year were low. I have met many people since who, after dozens of efforts to encourage potential bone marrow donors to sign up, still have not found a match. Adding your name to the bone marrow registry is quick, easy and painless — you can sign up at marrow.org — and it just takes a swab of a Q-tip to get your DNA. For cancer patients around the world, it could mean a cure.
The bone marrow transplant procedure itself can be dangerous, but it is swift, which makes it feel strangely anti-climactic. On “Day Zero,” my brother’s stem cells dripped into my veins from a hanging I.V. bag, and it was all over in minutes. Doctors tell me that the hardest part of the transplant is recovering from it. I’ve found that to be true, and I’ve also recognized that the same is true for Adam. As I slowly grow stronger, my little brother has assumed a caretaker role in my life. I carry his blood cells — the ones keeping me alive — and he is carrying the responsibility, and often fear and anxiety, of the loving onlooker. He tells me I’m still a bossy older sister. But our relationship is now changed forever. I have to look to him for support and guidance more than I ever have. He’ll always be my little brother, but he’s growing up fast.
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.
