I Survived Cancer as a Child, but I Will Never Outrun It
When I was four, I was diagnosed with leukemia. Even in remission, it has changed my life — both for better and for worse — and I will never rest easy because of it.
Let’s start at the beginning. In 1997, my mother began to notice a drop-off in my physical activity. Before that, I was very hyper and always on the move. But as the months went on, she noticed how weak I would get. She watched as I went from a hyperactive toddler to a fatigued child, and somewhere in there, my enormous appetite began to vanish.
Concerned, she began taking me to different doctors. A few times, they chalked it up to a parent’s paranoia and a growing baby boy. But my mother knew better and pushed for more tests.
To both of my parents, December 19, 1997 is a sacred day, with hugs and treasured kisses every anniversary. It’s the date they finally got answers, and the day I was diagnosed with acute lymphoblastic leukemia, or ALL for short.
The next few years are a bit of a blur. I became a patient of the Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders, which operates as part of the NYU Langone Medical Center. I remember their offices were almost on the same street as the Empire State Building, and gazing at it from the car made the long drive into the city much more bearable.
I remember that they had a playroom on one end of the waiting area, and a tiny theater space on the other end which had a Nintendo 64 in it. One day, my father gifted me with one so I could play video games like Super Mario 64 and Mario Kart in bed at the hospital. I didn’t find out until very recently that a coworker of my father gave it to us as an act of kindness, after hearing that I had leukemia. This one twist of fate is why I love games today.
I remember living with a BROVIAC line directly beneath my left pectoral. The surgeons removed it after I developed complications, and for the rest of my chemotherapy treatments, they outfitted me with a chest port just below my right collarbone. I have scars from each one.
I remember missing tons of school. Lots of kids in my grade were jealous and thought I was cool for two reasons: that I got to miss a lot of school, and that I was bald like Michael Jordan. (This led to a couple of angry calls from parents who thought my mother let a barber shave all my hair off. This is by far the best story about my childhood.)
I also recall my parents sleeping on a cot next to my bed all the time. But most of all, I remember that one night, I had a terrible nightmare. I jolted awake, in tears, and looked for Mom and Dad.
But they weren’t there.
I screamed. I’m pretty sure I screamed “Mom and Dad!” as if they’d been abducted from the Earth before falling face-first into my pillow and crying my eyes out. I don’t believe I had a roommate that night, which was fortunate, because the nurses heard me all the way down the hall and rushed to my side, comforting me when I didn’t know where my parents were.
The next day, a family friend came to visit in their stead. Someone must’ve told me that Mom and Dad had gotten food poisoning and were being treated elsewhere in the hospital, but it went over my head. All I remember was loving my parents all over again when they returned, exhausted and hurting, but amazing parents all the same.
After three years of chemotherapy and operations, my cancer cells disappeared, and I went into remission. I became an official survivor of leukemia, and at age seven, the fight of my life was over.
‘Survivor’ always sounds like a nice word. According to Merriam-Webster, ‘survive’ is an intransitive verb, meaning “to remain alive or in existence; to live on.” There is an implied glory behind living to see another day. To stare Death in the eye as you show him that royal flush and walk away from the poker table.
What we don’t talk about is the guilt of leaving the other players behind, especially if you couldn’t do anything for them. Sometimes, you have to watch as a fellow patient folds or busts. And if you do get the chance to cash out, you almost never know if anybody else will hit the jackpot after you’re gone.
Thankfully, Death is a courteous escort in the dark. He’s either welcoming you into the depths of his home or looking forward to your next visit.
But I was young. I don’t remember enough about those years.
I don’t know who I left behind.
“No one can tell what goes on in between the person you were and the person you become. No one can chart that blue and lonely section of hell. There are no maps of the change. You just come out the other side. Or you don’t.”
— Stephen King, “The Stand”
Cancer is a disability. For me, it became a childhood disability, and because I was so young, a lot of the struggles didn’t transpire until the end of my treatments. After all, I missed so much school that I nearly fell behind, but I also trailed on one very important thing: social development.
Because of that, I operated as a human being who had the support of special needs programs while simultaneously resenting them. As a child, I was disabled, but as a teenager, I possessed little to no excuse, even as pieces of the system implied that I should. Add in a genetic heart condition and a diagnosis of Tourette’s Syndrome, my life turned into a roller coaster.
While I still had cancer, we moved from Brooklyn to Westchester, just north of New York City. Between kindergarten and first grade, my special needs program was moved into another school within the district, across our new town — a significant change at a time when my mother about to give birth to my sister. But we had to make do.
In second grade, my parents bought our first home and were able to enroll me in a Catholic school. After missing key developmental years as a kid, I became a prime target of bullying, and while my teacher that year tried to be fair, the administration was not and considered me to be the problem child. But halfway in the school year, I entered remission for my cancer. With such good news, we persevered and made do.
During third grade, the abuse reached new heights. I was bullied daily, and my new teacher proved to be no help. I remember trying to be nice to everyone, but I had no real friends. The teacher considered me disruptive every day and sent a lot of notes home with me, and when my parents demanded accountability from the administration, they offered little sympathy. I would spend every night fearing the next day at school, pleading with my parents to call me out sick the next day.
The struggles of functioning after my disability reached a peak when I reported symptoms of a tachycardia episode as a result of my heart condition. The teacher ignored my discomfort and sent another note home.
My parents were furious. Halfway through the school year, they picked me up early and never looked back.
From third grade until fifth grade, I attended an alternative school — and finally, we all noticed improvement. My days were spent pursuing the gaps in education that I knew I was missing. I became interested in geology and the weather. I figured out mathematics with Minesweeper, of all things. And I had friends again — friends which roamed the surrounding woods and nearby lake shore with me on numerous class exhibitions. And I aced all of my state tests.
This period of my life alone taught me two things: that my parents were willing to make every sacrifice for the education I deserved, and kids are more than ready to succeed if you let them try things their own way.
In sixth grade, we moved again and I attended a public school district for the first time in four years. The improvement slowed, but I could still catch up. In classes, I was assigned an Individual Education Program (IEP) and learned how to produce the kind of work that would be expected of me. During recess, I found new bullies, but made substantially more friends, including my best friend of over a decade. Times stayed rough, but more and more, I had my Tourette’s Syndrome to blame.
But even as I got older, my past leukemia haunted me in new ways. When we studied existentialism in high school, I couldn’t help but wonder why my life seemed more valuable than the children who didn’t survive. And after facing my own mortality at such a young age, I grew reckless and eccentric. Nothing fully satisfied me, and there were always crazy stunts to pull.
More than once, I climbed onto the roof of the school and never got caught. Fortunately, I only ever got into one fight and managed to talk my way out of punishment. Perhaps ironically, I pretended to be bisexual because I didn’t like the growing stigmatization of such identities in my school , only to realize a couple years later that I was, in fact, bisexual. And from there, a little bit of usefulness emerged, as my best friend and I became confidantes and counselors to the outcasts of our high school.
After I graduated, I went to college for creative writing and attended without special accommodations. Through some miracle, I managed to become a functioning adult after all the time that I lost.
But for every small success of adulthood, I’m also disadvantaged. I became a writer, but my understanding of literature couldn’t match my peers. I wiggled into game design, but every idea I have can’t be backed up with proper reasoning — only the simplicity of good instinct and the prayer that someone will trust me.
And of course, there’s the ever-present question of my healthcare in the future. In a few short years, I will fall off my parents’ health insurance and ask some hard questions about the system. If insurance in the United States changes between now and then, I am almost assured that it will change for the worse. I do not know if my history of cancer will be considered a previously-existing condition, or if minor surgery to fix my heart issue helped me in any way. And I also do not know if I will be able to afford healthcare on my own, or if I’m going to be all right.
What I do know is that every day — usually before a shower, sometimes in a pool bathroom — I stare at myself in the mirror and examine the scars. They’re the signs of a survivor. The signs of a person who lived on when someone else couldn’t. A constant reminder that I carry the strangest of burdens, and that I will do so until my dying breaths. But I’ve learned of optimism and hope, and I know the lesson.
I may not be able to escape the past, but every day is the chance to live with it.
I don’t waste it.
If you enjoyed this article about life after cancer, consider a donation to Nicolas Hornyak’s preferred charity, the Leukemia and Lymphoma Society, or Light The Night, their annual fundraiser walks.
If you also want to personally thank Nico for sharing this story, feel free to buy him a cup of coffee here.