My name is Thomas, and I am an acute lymphoblastic leukemia (ALL) survivor. I’m currently 10 years and eight months post-transplant. Well, 10 years and eight months out from my second transplant. I’m 11 years and eight months out from my first transplant, and 14 years out from my initial diagnosis and the beginning of this story.
I was diagnosed with ALL on April 24, 2012, the same day as my second anniversary with my then-girlfriend, Gracie (now my wife). I was 24 years old, just figuring out my career, and hadn’t been to the doctor in years. Gracie was finishing grad school, and we were looking forward to all the adventures of our mid-20s. Well, we were in for an adventure, just not the one we expected.
Now, the chance of getting any type of cancer under 30 is very slim, and leukemia only has about a 1.6% incidence rate overall. So, in all likelihood, my cancer diagnosis will be the worst luck I will ever have in my life. But, that stroke of terrible luck has served to highlight all the good luck I otherwise might never have noticed.
Right out of the gate, I was lucky; I was Philadelphia chromosome negative, I was young, strong, and otherwise healthy, I had good insurance coverage, I had supportive family and friends, and Gracie willingly took on the challenge with me. My initial treatment was an intense chemotherapy regimen, and — continuing the good luck — after a 26-day hospital stay, I was declared no-evidence-of-disease and went home to continue my chemotherapy out-patient.
And that, I thought, was that. A year later, we moved to my wife’s hometown of St. Louis, I was feeling almost back to normal, and it felt like, amazingly, cancer was going to be a minor setback in my story.
But, the disease had other ideas. It was 2.5 years after my first round of treatment. We finally felt secure enough in my health and our careers to start looking for a place of our own, and I was working on a wedding proposal. We were at a baseball game one evening after a check in with my oncologist when we got the call — lymph nodes swollen in my abdomen, all signs pointing to relapse, and the only option was a transplant.
After I relapsed, we knew that a stem cell transplant was the next step, so we reached out to the Siteman Cancer Center. You see, neither of my siblings was a match for me, and I had no matches on the registry; I was left with limited treatment options. Siteman was one of only a couple clinics in the country at the time that was performing the procedure I needed, a haplo-identical stem cell transplant from one of my parents.
So, once again, in the depths of disaster, I had these strokes of luck. I was lucky that Siteman could take my case, lucky my parents were both alive and willing to help, lucky that one of the only clinics in the country that could help me was 15 minutes from my home. And above all, I was lucky that I live in a time when cancer treatment technology has come so far. The haplo-identical stem cell transplant had only been a viable treatment option for five to seven years at that point. If it weren’t for places like Siteman continuously pushing medical technology forward, I wouldn’t be standing here today.
We moved ahead with the transplant with my father as the donor. I was admitted to the hospital on Christmas Eve 2014, and a week later, I welcomed the brand new year with brand new cells. They grafted quickly; I was out of the hospital less than four weeks after transplant and was able to start working again a couple months after that. I could feel my momentum growing again; I felt like I was picking back up almost without missing a beat.
But of course, not 10 months post-transplant, a lump showed up on my shin, and it’s the same old story: relapse and prepping for transplant but with my Mom as the donor. Except this time it’s different. We’re less than a year removed from my first transplant, my body is still weak, and if this doesn’t work, then it’s unclear what the next step is. I’m only 27 years old, and this might be my last chance, and I can see that knowledge in the faces of everyone around me and feel it shadowing my own thoughts.
But my reactive good luck held. My mom donated her cells, and while the road to recovery was longer this time, the cells grafted, and I was out of the hospital five weeks post-transplant. I was much weaker this time; it took me 10 months after transplant before I got back to work. Since then, I’ve also had both hips replaced due to treatment side effects, I was hospitalized for shingles which became meningitis, and I struggled to deal with the psychological impacts of my experience.
But despite all that, I am here today, 10 years and eight months after my second stem cell transplant — over 14 years after getting the worst news of my life — and I can tell you that it can get better. Life is and will always be a struggle. My experience with cancer has certainly changed me in lasting ways. But after years of fighting, today I’m working in a career that makes me feel fulfilled, I’m healthy and strong again, and my wife and I have had a wonderful life full of experiences I never thought I’d have. I’m happy, I’m healthy, and I’ve stopped constantly waiting for the other shoe to drop.
At this point, you may have noticed that I talk a lot about luck in my story. One of the things I had to come to grips with early in my treatment is how little control I had over the outcome. I could be a model patient, do everything my doctor said, and I still wasn’t guaranteed a positive outcome. It all depended on this impossible-to-predict disease: will it spread, will it mutate, will it be aggressive? These were factors I had no control over, but which seemed to control my fate. I was struck by the sheer randomness of it. Even today I don’t have any idea what caused it. I just got hit by a random cosmic wave, or inhaled some random particle that hit a piece of my DNA just right, and suddenly I was fighting for my life. It didn’t matter what kind of person I was, how healthy I’d been up to that point, there was nothing I could have done to prevent it.
That perceived lack of control, the sense that my fate was out of my hands, is one of the more nagging mental issues I faced throughout my treatment. But early on, I almost instinctively hit upon a mindset that has helped me maintain my optimism and positive outlook. Gracie often tells me that even if I can’t always control the situation I’m in, I can control my reaction to it, or more broadly, my behavior. So, I decided I would use the control I still had to make a choice, the choice to continue to live joyfully in any way I could.
During my first hospital stay, I brought in everything 24-year-old me could want: my laptop to Facetime and use the internet, my Xbox and a stack of books to pass the time, my old guitar to finally learn a new skill. I sent Gracie pictures of me salsa dancing with my IV pole, and joked with my friends and family when they came to visit. The people around me responded beautifully in-kind. My parents went out and got a box of chocolates so I’d have an anniversary gift for Gracie when I couldn’t leave the hospital. My friends came by my hospital room just to hang out, like we normally would. Gracie and my parents put together picture boards and decorations to make me feel more at home. Taken by themselves, these are all little things, small decisions, each a splash of sunlight. But by adding up dozens of these small choices, we were able to make a safe haven of joy and comfort in the midst of cancer’s chaos.
I carried that experience with me, and when the relapses came, I always found ways to sneak in the little moments of joy. I had two head-shaving parties, once giving myself an orange mohawk and the next time shaving off just the top first and putting on glasses to see how much I looked like my dad. I hosted board game nights with my friends in the hospital visiting rooms. And I’m pretty certain I’m the only person ever to have received a bone marrow transplant dressed in a banana costume.
So, as you can probably guess, I’m a bit of a goofy guy. The banana costume thing isn’t limited to transplants — my wife and I travel with them and take pictures as bananas in the jungle, bananas on the beach, bananas posing in front of the Colosseum, that sort of thing. So, that’s where I get my joy, in random acts of silliness. But while the specific examples I gave might not match your life, what I’m trying to say is this: no matter how bad the situation is, it’s always worth it to try to create little bits of joy. Find those little things that make you happy and hold tight to them; they’ll help you weather the storm.
In the end, though, I’m just some guy who randomly got cancer and was lucky enough to make it through. I hope at the least I can serve as proof that there is hope beyond treatment; and if you are feeling that lack of control, maybe something from my experience can help.
Thomas
acute lymphoblastic leukemia (ALL)
