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.
“Can I at least have a reason?”
I asked her as we sat in her mother’s car, hoping for some last mercy from my first real love. Even then, after weeks of uncertain, ambiguous communication, the way she looked at me still made my heart catch in my throat. In a way, it was precisely that icy look— and the ever-elusive, ever-tempting promise of melting it into laughter— that made it so hard to process the events of the evening.
“No,” she said, looking pointedly at the passenger side door. When I made no move to leave, she reached over me and shoved it open. A moment later she was gone, the engine throttling off into the darkness. I watched the brake lights flee my cul-de-sac with hopeful expectation—that they would return, that the girl I loved would return, that what was happening to me was not actually happening. That—hah! —she got me. Good one! I would exclaim, full of mock verve and mirth. Very funny!
I ran into the house to get my keys, moving in unthinking haste to chase her, to chase the ideals she represented, to chase whatever that something was that could alter the delicate rhythm of my heartbeat. Running back outside, keys in hand, I returned to the driveway still gripped by hopeful, naive denial, ready to find her, but what I found instead was mere darkness, shadowy treetops whispering in the wind. It was Prom Night and I had just been dumped.
Then—of course!—I was overwhelmed by a sudden, massive attack of pain in my legs, like an armful of hot, twisting knives digging into my hips, and I could suddenly no longer support my own weight. I hit the tarmac.
I didn’t find it funny at the time—in fact, I found it dreadfully, tearfully painful—but now even I can look back and laugh about it. I was a teenage guy in dirty Converse and an extra-large kid’s tuxedo with a wilted boutonniere and a broken heart— things were going just so great— why wouldn’t my legs give out, too?
Back on the ground, I felt helpless and humiliated. I was unable to do something as simple as get up and stand on my own two feet. I cried out for help, but no one heard me. Any sort of movement seemed to trigger whole swaths of undiscovered levels of excruciation, and I teetered on the edge of collapsing even further into the depths of hopelessness. I felt nearly overwhelmed, powerless in the face of the unknown: I couldn’t get up, I could barely move—how on Earth was I going to get all the way back inside?
In the end, I simply did the only thing I know how to do in moments like that—I kept trying, like the stubborn fool that I am.
Painfully, slowly, doggedly, I dragged myself to my car, pulled myself up just enough to open the door, and with every bit of strength I had left, pulled myself up, pressed the car horn, and held it down until my mom woke up and helped me get back on my feet.
As a scattering of lights came back on around the cul-de-sac, I felt even more horrible and humiliated, with wet, hot cheeks and a furiously wounded heart. Although I have been cancer-free for over a decade, it would be a saccharine-coated untruth to say that I have been free from cancer, that I was cured, that I left treatment and returned stress-free back to the ‘normal’ world of shining good health. My legs gave out because the aggressive experimental treatments that had saved my life as a child caused a sickening constellation of late effects, that— through no mere coincidence— always seem to rear their dreadful heads at the worst possible moments. No mere coincidence because many of them tend to be aggravated by stress, so, in a way, my body seems to have a built in mechanism to ensure the continued functioning of Murphy’s Law: my Irish heritage at work, perhaps.
And yet—even in life’s ‘worst’ moments, I have found that there are always things to be grateful for.
Today, more than five years after that night, I often still struggle to remember that gift of gratitude. Prom night was not the first or the last time I saw myself collapse under the absurdity of life’s circumstances, unfairness heaped upon ridiculous inequity. Nor was it the first or last time I responded to the exigencies of my existence by standing again and seeing myself triumph over my difficulties.
I’ve experienced innumerable falls and rises since I was diagnosed with Stage IV Neuroblastoma at 8-years old, when the doctors discovered a tumor the size of a football growing out of my right adrenal gland. By the time they had attempted to remove it, slicing me open from my ribcage around to my spine, it had already metastasized to my bone marrow and wrapped its tendrils around my pre-adolescent heart. I had my share of rises and falls before my diagnosis as well, believe it or not, but the experiences of my treatment were truly an unparalleled lesson in the human condition.
Before I arrived at Memorial Sloan-Kettering, doctors told my mother that I had two weeks to live. When she first heard the news, her world shattered. She told me later that she leaned against the wall in my pediatrician’s office and slowly slid down to the floor, overwhelmed and alone. But she did not give up. The doctors at Memorial didn’t give up. My dad and grandparents and family and friends didn’t give up. They did what they had to do: they all helped each other, and helped each other help me, and we all stood up together.
At 23, I have spent more time in hospitals and doctor’s offices—reciting my lengthy and complex medical history, lying motionless under the newest mechanical eye of medical science or writhing alone in my room, gritting my teeth against my body’s latest twisted permutation of pain and nausea and boredom—than many people will spend in their entire lives.
I have endured more trials and treatments and complications than I can even easily recall, and yet, I continually endeavor to look back on my trials with a good humored heart, to see the bright, beautiful side of my past and present difficulties. Because, quite simply, the choice is only my own, and I feel that I have cried enough… and, honestly, my preference is for laughter. Laughter because all of those moments, those moments that seemed so unbearably, unimaginably awful then, so unfair and utterly undesirable, they’re moments that I now dearly treasure, because they’ve led me to where I am today. And isn’t that something worth laughing about?
So, despite it all—and in fact, due to it all—- I am grateful.
Am I grateful for a perfect, blissful, ecstatically beautiful prom night? I wouldn’t quite say that, no.
Am I grateful for an ever energetic, painless, and joyful youth, overflowing with innocence and exuberance?
Nope, not that either.
Am I grateful for the people who have continually helped me to stand up and move forward?
Absolutely, heartwarmingly, lovingly so.
Am I grateful for that mid-night fall, pain and all? Grateful that my heart was saved so that it was able to be so agonizingly broken? Grateful for the hard-won ability to look back and laugh at my own suffering and misfortune? Grateful to be able to be part of life, with all of its glorious, dramatic ups and downs?
Surprisingly, triumphantly, gleefully: yes. Yes I am— and I wouldn’t trade that for all of the perfect prom nights in the world.
My name is Sebastian Gillen and I am a cancer survivor.
So what is pediatric cancer?
Pediatric cancer is not being able to play with your friends on the playground because your platelets are so low that your body can’t stop the bleeding and the bruising. Pediatric cancer is having to wear a mask every time you go out in public because your immune system can’t even fight off a cold. Pediatric cancer is being an eight year old kid who’s terrified of needles and having to learn to get stuck fifteen times a day and not shed a single tear. It’s having a tube embedded in your chest, right in your vena cava, and two IVs in one arm, so you can’t sleep on your side or your front. It’s being tethered to a pump, your constant companion that beeps angrily whenever you need new fluids or there’s air in your line, which always seems to be at the worst possible moment.
Right when you’re finally starting to have fun playing UNO in the playroom.
When you’re just about to fall asleep, desperately grasping at hours of precious respite from the pain.
When you’ve almost forgotten, just for one second, that you’ve spent the past 6 months writhing in a hospital bed and that the next year isn’t looking any better.
Pediatric cancer is losing your childhood along with all of your hair.
It was RFK who said, “Some men see things as they are and ask “why?” I dare to dream of things that never were and ask, “why not?”
People all around the world hear about kids getting cancer and suffering and kids getting cancer and dying, and they ask themselves “why?” Why do these kids have to go through so much? Why do twelve thousand, five hundred kids a year have to trade baseball bats, soccer balls and play dates for catheters, bedpans, broviacs?
Why does an eight year old girl have to run home and cry on her mother’s shoulder because her friends don’t understand the words chemotherapy, radiation treatment, or bone marrow transplant, and because she doesn’t understand why she has to be the one who has to be so different?
Why does a seventeen year old boy have to sacrifice his chance to go to college because he lost his golf scholarship along with his leg?
People all over our planet see these kids as they are, hairless but indomitable, and they can’t help but cry.
Sometimes, when I’m reading the news, I see the world as it is, a world full of greed and malice and corruption, darkness, and I find it hard to see the light. But then I see these children fighting their hearts out, never blinking in the face of the blinding blackness of their deadly, private wars. I see these children and I remember how to dream. And in my dreams, I see every last one of them winning their battles and I ask, “why not?”
These kids fight for so long and so hard because they dare to do more than just dream. They dare to hope.
Hope that one day they can play tag and not have to worry about having to go to the hospital for two weeks because they skinned their knee on the gravel. Hope that one day they can actually feel what’s like to run outside on a summer day again, go sledding again, be a kid again, instead of watching it from the other side of a window or TV screen. These kids lie in bed, staring at white plaster walls, hoping for miracles.
We all know that there’s no reason why not. In honor of all of those who have fought and fallen, in support of those who continue to fight, and to spare those whose fight has not yet begun— we can beat these diseases.
Together, we can reach the day when kids just like me do get to grow up and our dreams become our reality. Together, we can conquer childhood cancer.
I had my primary tumor removed in August of 1998 on the lucky day of Friday the 13th.
I was nine years old.
After six months of aggressive chemotherapy it had shrunk from the size of a football down to the size of a walnut. Immediately prior to the surgery, I was blissfully unconcerned: they told me that this was just the next step we had to take on the road to making me get better, and I trusted them completely. As they put me under, a giddy thought came to my mind about the big rubber rat (given to me by a Child Life specialist) hidden under my gown: my biggest concern was that I wouldn’t be awake to see Dr. LaQuaglia’s reaction when he discovered it.
The operation lasted almost fourteen hours.
When I finally began to wake up in the ICU, I was hooked up to even more machines than usual. EKG leads, O2/Sat sensors, a drainage line stuck through my side, a catheter running into my bladder, a naso-gastric tube running up my nose and then down the back of my throat to my stomach: they all ran in a madly ordered tangle to a dizzying array of rhythmically whirring pumps and monitors that were splayed around my bed.
Existence was suffering. This was not news to me: after the harrowing experience of my first exploratory surgery that sliced me from sternum to spine, after half a year of blood draws and MRIs and bone marrow aspirates, after living with a central line permanently implanted in my vena cava, I had already become far too educated in that fact for such a young boy. This was new, though, above and beyond all of that. At first, and for what seemed like forever, it seemed like existence was nothing but suffering.
Whenever my consciousness would come to the surface and interact with my physical reality, there was only the myriad discomforts of the sensors and tubes, the profound, undulating waves of pain that roared from the core of my being, and a deep, opioid-hazy sense of confusion and detachment. I tried to stay as unconscious as possible, for as long as possible. But it was fitful and drugged and continually interrupted, and so the distinction between “awake” and “asleep” was not always obvious—indeed, it was something I was rarely conscious enough to even consider. At my most coherent, I could barely move, I could scarcely talk, and I couldn’t eat or drink at all.
Eventually, as days of excruciating semi-consciousness passed, I began to notice more. I began to notice that besides the overwhelming suffering there was also an overwhelming amount of love: the driving devotion of all the people around me, the never-empty recliner next to my bed, occupied in tender, dutiful rotation by my mother, my father, or my grandparents. Then there was my love for all of them, the need to feel their hands in mine, and the desperate, impossible desire to be scooped up in their arms, cradled and nursed, saved, somehow taken away from twisted prison that my life had become.
Beyond that, I had one oft-repeated request, one thing that needed to happen before I could start feeling anything like a human again, which I scrawled on a pad cleverly provided by my grandfather: when was Dr. LaQuaglia going to come by and take out the naso-gastric tube?
Nobody seemed to know.
Then, in the middle of the night, I awoke from my restless slumber to find Dr. LaQuaglia standing at the foot of my bed. Something about the situation seemed especially peculiar and dream-like— why was he here in the middle of the night? where was everyone else?— but I didn’t dwell on it. I was happy to see him, and greeted him weakly. We exchanged some post-surgery doctor-patient formalities, and as soon as I could, I asked him in a croaking, choking, halting voice: “When can I get this tube out?”
“You can get it out right now,“ he said.
Awesome, I thought, as I waited for his next move, breathing slowly.
He looked at me blankly and said, “Go ahead, take it out.”
I stared at him for a second, plainly stunned. “Right now?” I took a breath, slowly and painfully. “You want me to take it out?”
“Yeah. Go ahead. Peel off the tape.”
I peeled the tape off of my nose as he watched in silence. Then it was loose, and I looked at him expectantly, my heart racing. This wasn’t what I had been expecting. Would I be able to do it myself?
He nodded and said simply, “Just grab and tug.”
I took a deep breath (or rather, as deep as I could with a freshly-stitched incision running most of the way around my torso and lines tunneling into my heart and digging into my side) and I tugged. At first what I felt the most was the tube sliding along the top of my throat and rubbing against the back inside of my nose. A good four inches was out now, yellow-green and shiny with wetness, and now I could feel it all the way down to my stomach. I hadn’t felt those parts of my body, the slippery linings of my insides, before that moment and I haven’t felt them since.
I looked at Dr. LaQuaglia expectantly, breathing hard, waiting for him to crack, waiting for him to step in and admit that he was doing a crazy thing, making a weak, sick, exhausted kid suffer one further indignity, forcing me to bear another brutal burden. I wanted him to jump in and rescue me, relieve me, save me.
He looked right back at me, patient and unwavering.
I closed my eyes and clenched my jaw, then took a slow breath, relaxed my jaw, and pulled again. More tubing came out, but even more was still inside, an unbelievable length of slickness, and so I continued pulling, suppressing my urge to gag uncontrollably, continued pulling and pulling, hand over hand, for at least another five or six tugs. It seemed to take an hour that was 10 heartbeats long. And then the last bit popped free, slimy and dripping bile.
I finally gagged a little, and my throat was viciously raw and sore, its nerves screaming sharp, gravely, acidic obscenities. But at least I was free from the tube and so I smiled. Of course, that made my throat hurt even more, so I stopped.
I still felt smile-y, though.
Before I knew it, I was back asleep again, and Dr. LaQuaglia was gone.
I was never really sure why he had me do it myself; for a long time I didn’t give it a second thought. When I did, though, I had mixed feelings. Initially, I felt kind of betrayed. Why couldn’t he just help me out and do it for me? With time, though, I’ve come to appreciate the lesson.
Dr. LaQuaglia has saved my life—with amazing help, for sure, but help that would have been nothing without his hands— on no less than 3 separate occasions. I think, however, that I am grateful most of all for the difficult gift he gave me on that ethereal midnight.
Only a few days prior, he visited an unmitigated miracle upon my fragile being, disentangling a death sentence from my viscera, his hands delivering me from oblivion. And then he came to me, as I lay there in my life-lined helplessness, and he made me own my own salvation. He forced me to recognize the hidden, indomitable power that lay within me, the power that lays within us all: the power to rise beyond our self-made limitations, to pull ourselves up, hand over hand, from the deepest and darkest of depths and out into the light of our own triumphs, daunting yet inevitable.