Since I have no idea when I'll add people to this I figured I'd add some background as to how all of this came about.
I had been seeing a gastroenterologist for several years due to recurring stomach issues. Blood tests done following two routine appointments this year (2013), however, showed something that the lab coded as "abnormal liver enzyme levels." The doctor had written off the first result to a one-time aberration, but after it showed up again he grew concerned and ordered more tests. Unfortunately those tests showed a spike in my "M levels," which is doctor-speak for "Houston, we have a problem." So he called me (from vacation, which was a little scary) and recommended I go see a a hematologist/oncologist colleague at the Rocky Mountain Cancer Center (at Rose Hospital).
This began a roughly two-month journey with Dr. F, my new doctor (5280's Top Hematologist, yay!) ordering several more blood tests that pointed towards a diagnosis of multiple myeloma. You can Google it for a more in-depth explanation, but the way it was described to me is that I have collections of abnormal plasma cells that are created in my bone marrow and stuck in "on" mode like a bad light switch, so while not only crowding out the good plasma cells they also keep producing abnormal proteins my body doesn't use (or dispose of properly).
To confirm the diagnosis I had more blood tests done, followed by a bone marrow biopsy (as fun as it sounds, really!) and an x-ray of my entire skeleton. There was some confusion over my biopsy results (the pathologists would not agree on whether this was multiple myeloma or some variety of non-Hodgkin's lymphoma), so my slides were sent to the University of New Mexico at Albuquerque for another opinion. That came back as a definitive "multiple myeloma," at which point insurance was willing to pay for a PET CT scan to be done (to show what "stage" I was at, as I understand it) and I was able to seek out a second opinion.
My second opinion was at the Mayo Clinic in Rochester, Minnesota, which has an entire team of doctors that focus specifically on this and apparently has been heavily involved in both developing the tests and ongoing treatments in MM. My doctor there, Dr. M had her lab folks re-do all of the analysis of my tests and they confirmed the diagnosis. More importantly, the doctor there, although young, was not only as sharp as they come but compassionate and able to emphasize with my situation (she has a toddler as well). In fact we were so impressed with her that we decided to have her take charge of my care via the local oncologist.
And that takes us to today (at least the today I'm penning this). The plan is to start chemotherapy (more info in blog posts about this) on August 30th, 2013, and if the chemotherapy is effective then in January 2014 I will be doing an autologous stem cell transplant. That's a roughly six-week endeavor where they harvest my stem cells, kill off my bone marrow with hardcore chemotherapy, and then re-introduce my stem cells to effectively reboot my immune system (that's the executive version, anyhow).
After that? Who knows.
As of now there is no cure for multiple myeloma.
-Rich,
8/27/2013
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