As published in the April 2025 edition of The Torch, the quarterly newsletter of IWMF.
Never has the term “quality of life” meant so much to me as it does now, while helping to care for my father on home hospice. He was diagnosed with Waldenstrom’s macroglobulinemia (WM) in 2019 and successfully treated for it, although chronic fatigue, low hemoglobin levels, and recurring infections linger. Like so many other folks with WM, it’s sometimes difficult to distinguish which symptoms can be attributed to this rare lymphoma.

In 2023, however, Dad’s PSA levels began to climb, and his decades-long battle with prostate cancer required more aggressive treatment. After enduring chemotherapy, targeted radioactive therapy, and finally an immunotherapy drug being tested in a Phase 2 clinical trial, he’d had enough.
Dad had lost 30 pounds and was barely able to care for himself; his symptom burden was high, and his functionality low. In December 2024, the difficult decision to stop treatment for advanced metastatic prostate cancer had finally come. Home hospice was the logical next step.
Ever a striver, Dad asked his palliative care doctor what he should do next. The answer was, “Do whatever you want. Eat whatever you want.” And his long-time oncologist echoed the sentiment, advising us to “focus on quality of life.” This was the first time that quality of life had entered the medical conversation, although we as a family had been reflecting on it.
The book Being Mortal, written by a surgeon named Dr. Atul Gawande, had given us a helpful lens through which to see Dad’s medical situation:
“We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive.”

I began to reconsider the concept of quality of life. What contributes to life’s richness or fullness? Could simply becoming aware of one’s own “aliveness” be a step toward improving it?
Through my work with IWMF’s Wellness Program, I’ve encountered the quality of life variable. Though they are not specific to WM, many studies show that mind-body practices such as yoga and t’ai chi are feasible interventions used to reduce symptom burden and improve quality of life in cancer patients. See “Yoga into Cancer Care: A Review of the Evidence-based Research.”

Abbreviated as “QoL,” quality of life is difficult to define, as it can mean something different to each person and is constantly shifting and evolving. For my father, age 85, physical health is still a high priority. He gives himself a “30 out of 100” in this area. As the North American Orienteering Champion at age 77, it’s been hard for him to say goodbye to competitive trail-running and long distance runs. However, being able to stay in his home of 45 years and having a large family who surrounds him with loving support scores a “90 out of 100,” according to him. What aspects of your life are most important to you?
To those with Waldenstrom’s, QoL is a very valuable consideration, as you can expect to live for many years with the proper care: “It’s a marathon, not a sprint.”
READ MORE via IWMF’s quarterly newsletter, The Torch, published in April 2025.
























