Recently, I attended a presentation titled, Multiple Myeloma, State of the Art. The Leukemia and Lymphoma Society hosted the speaker at its monthly MM support group meeting. I joined the group in 2009, a little over one year after being diagnosed with this blood cancer.
It’s an active group with dozens of participants. Several are long term members whose experience resembles mine: debilitating chemos upfront, a stem cell transplant, and maintenance drug cocktails. We also share variations of the same side effects, along with a university level of interest in the behavior of this disease.
Like all MM patients, our initial diagnosis arrived with bad news. The disease, we were told, was incurable. But then, each time our doctors reached into the grab bag of options, they found solutions … at least temporarily. Months and years passed and we watched, via regular blood labs, as the disease settled into the recesses of our bone marrow, dormant for all intents and purposes. Inexplicably, the myeloma of others, undergoing similar treatment protocols, did not rest, but accelerated out of control.
The heterogeneous nature of MM lends itself to such unpredictable outcomes. The disease is diverse, perhaps unique, as it appears in each individual. And, as explained by the speaker at our meeting, scientists hope to find cures by understanding why some respond and others do not. To that end, developments in molecular genetics, the concept of minimal residual disease, and new methods of testing contribute to The State of the Art.
My group mates and I stay well informed on the science. Expanding our knowledge about this relatively indolent but relentless cancer helps us cope with the emotional toll of our own brooding, not to mention the loss of friends made along the way. But it’s important to balance our nerdiness with more subjective courses in the humanities.
Accordingly, I enjoy reading what other bloggers have to say about their experience. My favorite writers realize cancer is not a morality tale. It’s not good patient versus bad disease. It’s biology and biology is brutally indifferent to how wonderful we are. Nonetheless, their takes on cancer employ humor, art, and literature. These help to smooth the wrinkles of short timer syndrome. In fact, rounding out the cancer nerd’s curriculum is essential to passing that first required course in Mortality 101.
Few miracle cures exist for any of the many types cancers. With respect to myeloma, research plods along, faster we hope, than our disease. Clinicians trade in the commodity of time, buying months, maybe years with extraordinary drugs or experimental treatments.
Meanwhile, we still have lives to live. This month, our support group’s classwork has to do with palliative care for myeloma patients. Afterwards, there will be a farewell tribute to our retiring facilitator and the regional director of the Leukemia and Lymphoma Society, Sue Sumpter.
Sue epitomizes excellence in teaching. I’ve learned from her that it is not about just surviving. It’s about surviving with grace and poise; it’s about surviving with love and compassion for others whose road may be more rough or shorter; and it’s about surviving with openness to the miracle of every moment.
Thank you Sue. I hope you don’t mind, but the summer weather calls and I’ll be cutting class.