All physicians have certain patients who make an impression on them. I currently am taking care of an extraordinary 85-year-old woman who has already taught me a great deal about life, and who I suspect will teach me even more before her journey is complete. She leads a very active life, full of many rich experiences. She recalls encounters with famous individuals as if they had happened yesterday, and in some cases the encounter really did occur just a few days prior. Until recently, she competed annually in a tennis tournament. This patient is extraordinary not only for her vibrant life but also for the cognitive and physical capabilities she retains at her age.
I first met her four years ago. After a diagnosis of Waldenström macroglobulinemia, for which another physician treated her with rituximab, she was referred to me emergently because of the abrupt onset of severe pancytopenia. Evaluation at that time demonstrated bone marrow replacement by fibrosis and an inflammatory cell infiltrate. We were able to get her through this and back to her healthy state. However, the unusual presentation boded poorly for her, and one year later we did indeed diagnose gray zone lymphoma involving the pelvic lymph nodes (that is, nonmediastinal gray zone lymphoma). We had a long discussion regarding the typical course of this disease, the aggressive nature of the chemotherapy typically used, and the disease’s generally poor response. She nodded her head in acknowledgment throughout the conversation and did not ask many questions. At the end of the discussion, she expressed her desire to avoid chemotherapy or any other treatment that would negatively affect her quality of life. In light of her priorities, we began treatment with brentuximab and rituximab.
Her treatments were complicated from the outset by infusion reactions and rashes that were likely due to the rituximab. I was able to coax her back into treatment with single-agent brentuximab, and achieved a very good partial response after 12 cycles. Neuropathy, likely due to the brentuximab, prompted her switch from tennis competitor to chief umpire at this year’s tennis tournament.
My patient is very aware that her response to therapy will likely be short. At each visit, she reiterates my promise to preserve her quality of life. I often encounter patients who state with pride that they have led wonderful lives, have no regrets, and are not interested in being tortured by treatment. Just as often, though, I encounter patients who state that they want to live as long as possible, regardless of the discomfort associated with treatment. What drives patients to one choice over the other is often a mystery to me. People whose religion plays a central role in their lives may have an easier time with these decisions, guided as they are by their faith.
When a curative option exists, the risks and toxicities of treatment are easily justified. However, this is not the case when treatment is not expected to be curative. It is logical to accept more toxicity and greater impact upon quality of life for a longer survival, but I wonder how much the actual numbers factor into the decision. How can anyone determine what level of toxicity and discomfort is acceptable for additional survival, especially when everything is based upon a median? Although human nature enables everyone to assume that they are going to do better than the median, we know that cannot be true. Everyone is going to die, after all. A defined life expectancy in the form of a median survival can be a source of tremendous anxiety This is why I think that oncology treatments do more than just improve survival; they also mitigate the timeline and give patients back the uncertainty of when they are going to die.
With regard to my patient, I am now waiting to find out if my guidance was correct. I can only hope that I have extended her survival and preserved her quality of life. I fear the idea of my patient suffering from my treatment. Simply knowing that I tried my best does not always provide solace. What I do believe, and frequently remind myself, is that life is a journey and my role is to help each patient through the last leg of that journey. I often think of the words of Lucy Kalanithi, an internist and the widow of Paul Kalanithi, the author of When Breath Becomes Air. In her 2016 TEDMED Talk, she said, “I’ve learned that cancer isn’t always a battle. Or if it is, maybe it’s a fight for something different than we thought. Our job isn’t to fight fate, but to help each other through.”
Sincerely,
Richard R. Furman, MD