An early clinical trial participant likens his journey into the unknown to a space mission.
I am no stranger to how cancer can damage so many lives. In 2008, my father received a lymphoma diagnosis. After just one year, he succumbed to his illness. His older brother followed four years later, losing his battle with colon cancer. Both men taught me so much, but I needed them more than ever when I received my own diagnosis of diffuse large B-cell lymphoma at the age of 31. Thankfully, they left me with very valuable insight in the form of one last lesson: Always try to live for today in the hopes of having a tomorrow.
For my wife and me, part of that involved the decision to discuss starting a family. After all, my father, my uncle and I were the only men in our small family — it was left to me to keep our name going.
Of course, it wasn’t ideal timing for starting a family. It was eight years after losing my father, and I was facing liver failure, kidney failure, a feeding tube strapped to my face and significant weight loss — 55 pounds, to be exact. I was in immense pain, both physical and emotional, and felt anything but myself.
Just before I received my first treatment of chemotherapy — R-CHOP, short for Rituxan (rituximab), cyclophosphamide, Adriamycin (doxorubicin), Oncovin (vincristine) and prednisone — my doctors asked if my wife and I planned to ever have a family of our own. If so, we would need to bank some sperm immediately. Considering my physical condition at the time, I was in no mood to fulfill this obligation to secure a future with children in it. Don’t misunderstand me — I wanted nothing more than to have a family with my wife — but in that moment, I didn’t think it would be possible. I thought I was dying.
With just minutes to spare, due to the distance of the fertility clinic from where I was in the city, we took a chance on having a future. I couldn’t have done any of this without the unconditional support of my wife, Rachel, who carried us both when I was unable to stand on my own.
Later that night, I received my first chemotherapy treatment. Three hours into it we got the call from our fertility doctor, telling us that she could definitely get us pregnant. I never cry, but I did then. The cancer and the looming possibility of death didn’t exist in the moment that we learned we still might have a chance to become parents. It was exactly what we needed to hear to get through that tough first night of chemo.
The journey wasn’t easy. I endured two years of treatments that included chemotherapy, immunotherapy, autologous stem cell transplant, more chemotherapy and various medical trials that I kept failing. Through it all, I adopted the mindset of an astronaut. Like an astronaut, I had an obligation to my fellow man to discover the unknown in hopes of finding something that would save not just my life but also the lives of the patients after me. Like an astronaut, I didn’t know if being launched would make me a spectacle of fireworks or perhaps get me to my destination with no way to return. Or would I have the rare opportunity to complete my mission and get home safely, delivering something that would drive us all forward to a better life?
That’s the mission I set for myself during my treatment. It was a job, one I took passionately and wanted nothing more than to do well so that, as a result, all who followed would have a better chance at life. This was especially true because I was the fifth person in the world to be treated with chimeric antigen receptor-T cell therapy, more commonly referred to as CAR-T cell therapy. I was part of the JCAR017 clinical trial.
In the months leading up to the trial, not knowing what my fate would be, my wife and I decided to live for today and take the next steps toward becoming parents. I didn’t truly think I would ever see the birth of my child. That was a very sad thought, but this was bigger than me; I was leaving a piece of me behind for my wife.
Thankfully, the CAR-T cell therapy was a success and got me into remission. Shortly after that, my wife and I welcomed our daughter, Julia, into the world.
People always wonder, “How should I interact with someone I care about who has cancer?”
I think the answer’s easy: Give them a future. Give them something to look forward to. Plan things with them, because we all need a future to survive.