When I was in high school, I spent a summer working on combined kidney/stem cell transplants. The idea was that patients who needed kidney transplants, which normally require lifelong immunosuppressive drugs, could also receive a stem cell transplant from their kidney donor. As a result, patients would develop the immune system of their donor, which wouldn’t reject their kidneys and therefore require life-long immune suppression. At the time, this sounded like an ideal endeavor. The idea of a cure is appealing: These patients would receive not only a kidney, but also have the chance to be weaned completely from related medications.
Three years later, I was diagnosed with high-risk acute myeloid leukemia and told I would need a stem cell transplant to survive. The transplant was presented as the ultimate cure. But, in order for this “cure” to work, I needed to be in remission. So when I reached remission on a salvage round (treatment when other therapies haven’t worked) of chemotherapy, I was ecstatic. Going to transplant was exciting – a chance at a new lease on life.
I knew transplant would be hard. I would endure chemotherapy designed to destroy my bone marrow. I would be nauseous, develop mouth sores and be at high risk for infection. But I also knew it would end. There would be life after treatment.
The complications I’ve experienced since my stem cell transplant range from seizures to drug-induced delusion to severe graft vs. host disease (GVHD) of the gut, skin, eyes and muscle. I’m almost two years from transplant, which means that my GVHD is classified as chronic and may never resolve. I’m not as acutely ill as I once was: I go to school full time, have a summer internship, and do research on the side. I have a life. And yet, I feel overwhelmed at the idea of the rest of my life. What if I never feel healthy again?
I’m optimistic that, at two years post-transplant, my leukemia is unlikely to return. I’m starting to believe that my cancer was cured. But, the cost was and remains high. In a life filled with doctor’s appointments, medications, uncertainty, it’s hard to feel like I was cured.
I think back to the patients who received combined kidney/stem cell transplants and wonder about them. Are they healthy? Did they escape GVHD? Would taking the immunosuppressants have been worth it? It’s hard to say.
Brooke Vittimberga, Stanford ’17, is a human biology major, blogger, and research assistant at the Stanford Cancer Institute. On June 18, 2015, she was diagnosed with high-risk AML, and she had a sibling-matched bone marrow transplant on September 24, 2015. This piece is part of a series in which she’ll share her experiences.