As I was web-surfing tonight to see what was going on with sequestration, I learned that today was Rare Disease Day. Apparently a number of world-wide organizations designated today for various activities to raise awareness for the so-called “orphan diseases,” those ailments which are “orphaned” from research attention because of the relatively small number of people they afflict. In the U.S., a rare disease is defined as one that affects fewer than 200,000 Americans.
When it comes to “rare,” well, I’ve got “rare.” The estimated number of Waldenstrom’s cases in the U.S. a year is only about 1,500. Treatment approaches for Waldenstrom’s essentially have been extrapolations from treatments for multiple myeloma and more common lymphomas. Too bad that this effort fell on the eve of the sequestration deadline. What I hear in my university hallways is that all federal funding of scientific research is about to shut down, which isn’t going to help any of us.
I had hoped that after Tuesday’s treatment, I would be done, at least for a while. Based on Tuesday’s lab results, though, my USC doctor reluctantly agreed with the Dana-Farber Thanksgiving-time recommendation that I stay on this course for maybe three more treatments, so nine more months, at least.
The IgM level did drop, but the rate of the drop seems to be slowing down. This isn’t unanticipated – I’ve read in the literature about various possible reasons why. One theory is that treatment gets the “low hanging fruit” but ultimately can’t get to the most resistant WM cells which have managed to hide out deep in the bone marrow. Others relate to whether there are WM stem cells at mischief. It seems inevitable that I’m facing the “diminishing returns” scenario. In any event, I felt much better today than yesterday, but still don’t feel like anything ambitious.
After Bing died, I discovered in the grocery store the “Mitford” series in paperback – a collection about a lovable Episcopal priest in a country town in North Carolina with a cast of townspeople dealing with one another’s travails and heart-warming joys. It was good, clean escapism for me, and I clung to it even though Akemi would routinely come into my bedroom and ask, “So how are things in Mitford tonight?” I think it’s time to stop reading about sequestration, and head for Mitford instead.
P.S. The narcissi growing outside my bedroom window.