I continued to live a full and largely unaffected life, though I often suffered symptoms such as debilitating headaches and bone pain.
The hallmark fatigue of these blood disorders was not yet on my radar. I hiked. I cycled. I traveled. I was a night owl typically functioning “well” on five to six hours of sleep.
Then, in September of 2019, my summer bike rides became an exhausting effort. By October, I was so fatigued that walking up a slightly inclined sidewalk had me leaning on a lamppost to catch my breath. Doctors identified scarring (“fibrosis”) in my bone marrow, elevating my diagnosis once again, to the third evolution of my MPN journey, myelofibrosis.
“You’re a poster child for exploring new drug therapies for MPNs,” Dr. Ellen Ritchie, of Weill Cornell Medical Center in Manhattan, recently told me. Just seven months into my participation in a global phase 2 clinical trial for a new combination drug therapy, tests indicated significant, measurable improvement. It appears my disease is beginning to reverse.
More than two decades after my first of many bone marrow biopsies, I have more energy than many of the “healthy” people I know.
We tend to think of cancer as acute. Get it out quickly, go through treatments, prevent it from spreading. But for those with a chronic cancer like an MPN, there isn’t a distinctive beginning, middle and end. It can be overwhelming, emotionally exhausting, and even as we learn more about the disease, full of uncertainty.
“Often, individuals with a chronic illness, like cancer, are more challenged to be hopeful about their future, while also needing to be focused on thriving on a daily basis,” says Laura Kaplan, a licensed clinical social worker whose Connecticut practice helps people navigate serious illness. “It is important for their identity and quality of life to try to keep a good perspective about living with the process of their disease.”
March 11, 2021 at 05:00PM
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Nobody Wants Cancer. But a ‘Big C’ Label Has Surprising Upsides. - The New York Times
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