I remember that night last May, everyone but me asleep and my heart struggling. It pumped ruined blood, too depleted by leukemia to keep a body going. I might not wake up in the morning, I thought with sudden, dispassionate clarity.
My teenagers growing up, my future with my other half of 24 years, simple things like coffee with close friends – I nearly lost it all. Again.
If I had been born in any other era, I would not have made it to 40. I’ve survived chronic lymphocytic leukemia three times – in 2017, 2021 and now 2025. Each was a close call, but advanced medicine kept bringing me back. In fact, during my 2021 relapse, when I said yes to a clinical trial, the line between scientific research and my own life-and-death situation vanished.
My first therapy had failed dramatically. I was exhausted by heavy anemia and racked by intense pain. I had options, including a promising new therapy. I’ll admit it. I was nervous. It’s one thing to believe in science in the abstract. It’s another to consciously trust your life to it. I chose the clinical trial and signed a mountain of consent forms with one hand while an IV pumped a blood transfusion into the other arm.
The study drug, pirtobrutinib, was in the final phases of development in 2021. For my arm of the trial, it was being combined with two existing drugs – one an IV infusion and one an oral immunotherapy – in an aggressive response to an aggressive disease. My version of CLL doesn’t respond to traditional chemotherapy. Many new and emerging treatments, including pirtobrutinib, are targeted blood cancer therapies. Without them, I’m gone.
In a clinical trial, there are many additional blood draws and CT scans, plus electrocardiograms and bone marrow biopsies. Researchers need data, and that’s what they got from me. As for me, I got my future back.
The clinical trial had me back on my feet within about two months. Soon I was road-tripping and camping with the family. Soon I was working out and running again.
I want that to be the happily-ever-after, but cancer remains vicious. This spring, my leukemia came roaring back, fiercer and faster than before. Six months earlier, we’d learned that my wife’s breast cancer – which we thought was gone – had metastasized. She’s 42, I’m 43, and we are receiving treatment, living at the bleeding edge of what is survivable. Research has changed our prognoses from terminal to something resembling hope.
We’re living. And we’re far from alone.