“Whatever is happening is the path to enlightenment.”
I am a fifteen year veteran of Multiple Myeloma, a blood cancer of plasma cells. The majority of MMers have a life expectancy of around five years at the time of diagnosis. Approximately 20% of patients with this disease persist longer. I’m on the lucky side of that ledger.
MM is a chronic, incurable disease. Left untreated, it gets worse. Furthermore, it finds ways to work around treatments. When that happens, the patient moves on to other drug combos. Oncologists have options. Their medicine cabinets are well stocked.
Through the years, I responded to most treatments. I have a strong constitution. I go with the flow of side effects. My emotional DNA dovetails with the restraints placed on social activities. I avoid crowds. I like to be on my own.
I’ve had access to the highest standards of care. That, plus adherence to safe behaviors, allowed my disease to plateau. I’ve enjoyed a decent quality of life.
Lab numbers continue to suggest I’m floating in a sea of tranquility. But, it’s not all smooth sailing. Neuropathy, fatigue, and breathing problems cling to me like barnacles. The accumulation of toxic drugs conspire with my dysfunctional immune system. This old boat is taking on water and it seems I’m bailing with a teaspoon.
In December, my oncologist suggested we re-stage the disease. The implication was that we should try to do better. Several diagnostic exams confirmed what I felt: an entrenched morbidity more and more resistant to treatment.
There were 2nd opinions, 3rd and 4th opinions. Pragmatic doctors conferred. They proposed a new regimen. But, four arduous cycles later, we scuttled the program. It caused more problems than it solved.
Given my longevity with MM, I’ve nearly emptied the medicine cabinet of remedies. What remains are variations on past themes. Their durability is suspect and they come with consequences. It’s time to consider what’s outside of the box.
I have stopped all treatment. We drew blood to establish a new baseline. We will draw more blood and reassess. We might opt for a clinical trial. We might pursue Car-T therapy. Ultimately, the choice will be mine. For the time being, though, we wait.
Staying well requires patience. There’s doubt. There’s guesswork. You respond, you relapse. Such is life at the University of Cancer.
While we try to figure things out, I balance the course work with relaxed activities. I nurture our petite garden. I amuse myself writing songs. Shore birds entertain me at the waterfront. I enjoy the antics of grandchildren.
Anxiety? Occasionally. Today, however, I am at peace and optimistic about the future.
For more information, click on The Drill.
Now, a song, Time Floats Like A Feather.