by Suleika Jaouad
“Cancer doesn’t just put your life on hold,” said Ms. Jaouad, who was diagnosed with leukemia a year after she graduated from college. “It’s not like you get to skip back a few months and pick up exactly where you left off. I wasn’t going to get my old life back.”
I was so excited for what lay ahead, I nearly forgot to wave goodbye to my parents. Armed with a college diploma, my first job offer, a one-way ticket to Paris and a new pair of heels, I was ready to take on anything. Little did I know, I would be back in New York seven short months later. But my parents would not be taking pictures at the airport or chatting about my future plans. I would be in a wheelchair, too weak to walk.
In Paris, the doctors had struggled to make sense of my symptoms — anemia, fatigue and persistent infections. They ran test after test — I was even hospitalized for a week — but the results were inconclusive. I was just 22, but the doctors released me with a diagnosis of burnout syndrome and orders to rest for a month.
Rest didn’t help. Desperate for an answer, I Googled my symptoms. It seemed I could have anything from the mumps to diabetes to something called cat-scratch fever. The word cancer also caught my eye. The first doctors I saw in the United States thought I was depressed and suggested antidepressants. I said no and insisted they keep looking.
A week later, my worst fears were confirmed. Leukemia, the doctor said, dropping the word like a bomb. Soon enough I would learn the specific diagnosis: myelodysplastic syndrome, a disorder of the bone marrow. In my case, the disease growing inside me had morphed into acute myeloid leukemia. I would need intensive chemotherapy and a bone marrow transplant to save my life.
The long-awaited answer reverberated in my head, and I found myself slowly pronouncing the syllables: loo-KEEM-ee-ah.
Where cancer is concerned, it is safe to say there is no such thing as good timing. But having a life-threatening disease in your 20s carries a special set of psychological and social challenges. It defies our very definition of what ought to be. Youth and health are supposed to be synonymous. If only I could sue my body for breach of contract with the natural order of things.
Cancer magnifies the in-betweenness of young adulthood: You are not a child anymore, yet you are not fully ready to live in the adult world, either. After my diagnosis, I moved back into my childhood bedroom. And as I got sicker, I increasingly rely on my parents to take care of me. But at the same time, I have had no choice but to grow up fast. Daunting questions that most of my peers won’t have to consider for many more years have become my urgent, everyday concerns: How will I hold onto health insurance if I’m unable to work? Will I be able to have children? How long will I live?
Even inside the hospital’s oncology ward, being a young adult with cancer can make a person feel like a misfit. I am usually the youngest patient on the floor. In fact, I am the youngest person my doctor has ever treated with this disease. (A vast majority of patients with my form of leukemia are over 60).
Young adults might just be oncology’s tweens — too old for the pediatric cancer floor but equally out of place in an adult oncology unit. I am not suggesting that it is worse to be young and sick, but rather that young adults with cancer are a less visible demographic, swept up in the mix of adult cancer statistics.
A 2006 report from the United States Department of Health and Human Services presents a shocking reality: Despite great strides in treatment for most cancer patients, adolescents and young adults ages 15 to 39 have seen little or no improvement in cancer survival rates for decades. The report describes how survival rates have “been hampered because cancer risk and adverse cancer outcomes have been under-recognized in this population.” It points to the fact that health care providers are often not on the lookout for cancer in this age group and, as in my case, mis-diagnose symptoms — or miss them altogether.
Nine months, eight hospitalizations and seven chemotherapy treatments later, I am realizing that age is an inextricable component of how we experience cancer.
Cancer has forced me to pause my life at a time when my peers are just beginning theirs. For my friends, most of them young adults in their 20s, this is an exciting time as they look forward to starting new jobs, traveling the world, going to parties, dating and finding love, and all the rest of the small and big milestones that are part of early adulthood.
Like my peers, I have yet to fully define who I want to become. But as a young cancer patient, it is difficult to see ahead when I’m fighting for my life. I don’t know what the future holds. I just know I want to be there.
Suleika has written about her life as a young leukemia patient in The New York Times Well section. Her essays are called Life, Interrupted.