Everything started in 2009 with a curious result on a routine blood test ordered by my allergist. After lots more tests, I was told that I had "monoclonal gammopathy of undetermined significance," or MGUS.
Boom! With that (and without me realizing it at the time), I'd been blasted off to a new world - planet Myeloma. That was also my introduction to the bizarre language spoken on planet Myeloma. Random syllables thrown together into an incomprehensible, umpronounceable stew - bortezomib, electrophoresis, immunotherapy, blah, blah, blah. Eventually, though, this new language began to make a little sense to me as I moved from MGUS to smoldering myeloma in 2010 and then to active multiple myeloma in early 2013.
It was terrifying to get the active multiple myeloma diagnosis - learning that I would need to begin chemotherapy, and pondering the depressing life expectancy results I got from Dr. Google. That's when it fully hit me that I truly was off on another planet, a very scary place.
As I began to explore this new planet, I was offered the opportunity to participate in a clinical trial. Because my career has been spent working in the scientific/technology domain and because I want to help advance the science behind treating myeloma and other cancers, it just seemed natural that I should participate in the trial.
Through the trial I received Revlimid / Velcade / Decadron (RVD) therapy starting in Jan 2013, followed by an autologous stem cell transplant that May, followed by a couple more RVD cycles. Then in September 2013 I began Revlimid maintenance therapy, which I've been on since then, with a few gaps to deal with side effects.
I think of the side effects that I've had while exploring planet Myeloma as wrong turns that we've needed to re-navigate away from to get back on course. These unplanned side trips have included peripheral neuropathy from the Velcade, an E-coli infection that led to sepsis during the stem cell transplant, and heart rate irregularities caused by the Revlimid. With each of these wrong turns, though, we were able to re-callibrate the GPS and get back on track. The latest recalibration has been the insertion of a pacemaker to deal with the heart issues.
Despite those wrong turns, I've been incredibly fortunate as I've wandered around on planet Myeloma. Here's why:
- While on this planet I've gotten tremendous medical treatment from an awesome team of doctors, nurses, and technicians that has been guided by a myeloma specialist (a must for anyone who had landed on planet Myeloma!).
- With that treatment, we've been able to minimize the problems caused by those side effect wrong turns.
- Also with that treatment, I've moved into stringent complete remission and minimal residual disease negative status, the best possible levels of remission on the planet! So I expect to be on this planet a lot longer than Dr. Google told me.
- I've met some incredible other explorers who also landed on planet Myeloma, many of these folks through the PMMNG. It's great knowing I'm not the only person on planet Myeloma and that other folks have traveled through here ahead of me. They continually inspire me and help me explore this challenging planet through their courage, grace, and determination.
- I've discovered new interests, such as learning about biology and genetics.
- Being here has opened new doors for me, such as myeloma- and cancer-related volunteer activities that are very rewarding to me.
- Finally, I think/hope I've gained a new awareness of and appreciation for my time and place on this planet.
So, while I wish nobody ever would get rocketed to planet Myeloma, my time here has not been so bad, all things considered. It's certainly a different life than the one I had before, but one that has had upsides for me that have balanced out the challenges so far.