The headline above links to a video of a speech I gave on Saturday, June 7th, at the Guy M Stewart Luncheon, which is a fundraiser for both Memorial Sloan Kettering Cancer Center and the NYC Ronald McDonald House.
Here is a transcript of my remarks:
Good afternoon, everyone!
My name is Sebastian Gillen.
I spoke here four years ago, when I was twenty-one, just after graduating from Tufts University. Today, I’m going to talk to you, briefly, about the indelible mark my experiences have left on me…
When I was eight years old, I was diagnosed with Stage IV neuroblastoma. I had a tumor the size of a football in my abdomen and metastasis throughout my bone marrow.
I know that some of my friends are tired of hearing me say that: I’ve given a lot of speeches in the past decade or so, and it’s hard to start it with anything else. But it’s hard to argue that it didn’t have a fundamental influence, on my character, on the nature of my interactions with this human experience: they’re the bare-bones baseline facts that set the tone for everything that came afterwards.
After months of crippling abdominal pain and diagnostic dead-ends— lactose intolerance, acid reflux, stress— my pediatrician finally ordered an ultrasound. By that evening I was checked into Mt. Sinai and my blood was being type and crossed in preparation for surgery. They told my mom that I probably had two weeks left.
They cut me open around the middle, from my ribs to my spine, and they saw that it was worse than they thought. The tumor’s tendrils were wrapped around my vena cava— they weren’t going to be able to take it out. They closed me back up—with over thirty thick brass-colored staples—and told my mom their new plan: attach me to an artificial circulation machine, stop my heart, take it out, scrape off the cancer, put it back in, and start me back up.
Kind of like a car, I guess?
Luckily, my mother refused to believe this was the only reasonable course of action, and my family got a second opinion from Dr. Cheung and his team at Sloan Kettering.
I was promptly enrolled on the aggressive, highly experimental, and ultimately ground-breaking N7 trial protocol. Over the next eighteen months I underwent five rounds of chemotherapy, radiation treatment, countless scans and procedures, autologous hematopoietic stem cell transplant, and 3F8 immunotherapy. I was given a few lifetimes worth of crash-course lessons in suffering, in boredom, in bedpans and broviacs and biopsies, in the nature of mortality and humanity and the plain-faced brutality of existence—-fleeting, ephemeral, precious…and then I returned to the 6th grade—back to my new normal of being a nine year old cancer survivor.
When I turned twenty-three, I got my tattoo finished.
(Hold up arm.)
If you could see it, you would recognize it— it’s the symbol for Memorial Sloan Kettering. I got it out of gratitude, of course : I wouldn’t have had a chance if I hadn’t been at MSKCC. And I got it as a symbol of strength, yeah, as a reminder to myself of all that I have been through, that I am a survivor, headstrong and tenacious and full of laughter. And as a conversation starter, sure, because as you can see, it’s fifteen years later and I’ve still got a lot of things to say on the subject.
But there is another reason that is far more important to me, the real reason that I got it at all.
At the time of my old roommate Simon’s diagnosis, Dr. Cheung told his mother, “Even if the odds are one in one hundred… someone has to be that one.”
Our odds weren’t quite so bad, but nearly so. Out of nearly thirty children who were undergoing the N-Seven protocol at the time of our diagnosis, only myself and Simon are still alive.
Two months ago, I turned twenty-five. A week later, Alexa — sweet, precocious, precious Alexa, little baby Ali— would have turned seventeen.
That made me do a lot of thinking.
In 1998— nearly five years before the completion of the Human Genome Project— Ali and I were in the same room when we first received our infusions of the experimental 3F8 mouse antibody immunotherapy.
I was nine, and she was not yet two.
I remember that there weren’t actual beds in the room, only large, metal cribs, because neuroblastoma so disproportionately affects children younger than 6. I remember screaming and crying, alone, then together, our wails mixing above the heads of our parents, and how that somehow seemed better than screaming and crying, alone.
In the years since my cancer went into remission, my life has been far from pain-free. I have suffered from the debilitating, gut-wrenching pains of ulcerative colitis for more than a decade, I have spent countless days bedridden from arthritis in my spine, and the past five years have been too-frequently punctuated by the furious, nauseating excruciation of kidney stones.
None of these things, not alone and not together, come close to approximating the pain that I felt in that room during those infusions. Searing, spine-curling, toe-bending, neck-twisting agony— every nerve ending, set afire.
The only thing that came close to the pain of 3F8, perhaps, was when Alexa passed away.
I remember better days, too, later, after treatment, days marching on our government’s Capitol to convince our representatives that pediatric cancer research is a cause worth funding. I remember days lit up by her baby-tooth smile and bright blue eyes, her shiny blonde pony tail and chipmunk cheeks. I remember a universe that still hummed along in cheery resonance with the bubbly celebration of her laughter.
The bars across the arrow stand for three things: education, treatment, and research. To draw the clear parallels, those aspects correspond to the tenses of our perspective—past, present, and future. And while I don’t think it is necessarily an answer, I think it serves a good reminder of the need for balance— to remember to take a breath and just be and appreciate the moment, yes, but also to remember the heartbreaking beauty of what has come before and to prepare for the difficult joys of what is yet to come.
I still don’t know what I want to accomplish with all of my tomorrows and I’m still not sure how I feel about all of my yesterdays. But I know that right now I am grateful, because I am only able experience all of these weighty questions— and my journey towards my answers— because people like you decided it was important to invest in the future, and strive for a cure. So, on behalf of myself and all of those like me, thank you.
Thank you very much.