March is Multiple Myeloma Awareness Month, and to keep the awareness going strong, we’re sharing our recent interview with PatientsLikeMe myeloma community member Bob, also known as AbeSapien. The happily-married, long-time data processing expert spoke about his diagnosis experience with myeloma, the economic effects of his condition and his passion for horseback riding.
Your PatientsLikeMe username, AbeSapien, is a reference to a comic book character – can you tell us a little about the meaning behind it?
The movie Hellboy had been out fairly recently. It’s one of about three that we throw in to watch regularly (the others being Van Helsing and League of Extraordinary Gentlemen). The character Abe Sapien fits my personality as a straight man, although I’m not above throwing in a dose of sarcasm when the situation calls for it.
Multiple myeloma can be challenging to diagnosis – what was your diagnostic experience like? When did you first start experiencing symptoms?
I actually did not exhibit any symptoms until just before I started treatment. I was diagnosed with MGUS (Multiple Gammopathy of Undetermined Significance) in 2001 when a blood test taken during an annual physical showed above normal levels of the IgG protein. At that point my condition was only monitored via periodic blood tests.
I changed doctors in 2010 and my diagnosis was upgraded to Multiple Myeloma at that time. We continued to monitor my condition through periodic blood tests but performed no other treatment until December of 2012. At that time I suffered an incidence of blindness in my right eye. It was determined that the blindness (which passed off) was cause by a blockage of the central vein in the eye as a consequence of the thickening of my blood due to the high IGg levels. I started treatment at that time. That was the only real symptom I experienced as a consequence of the disease.
What’s it like living with multiple myeloma day-to-day?
Other than that first symptom of temporary blindness, Multiple Myeloma has not affected my day-to-day life. Treatment, on the other hand, required a full 12 weeks of disability, I still don’t have my full strength or stamina back from the treatment (Autologous Stem Cell Transplant). It’s a great diet aid – I lost 30 pounds in the month I was in the hospital.
The most major effect the disease for us has had is economic. I can no longer obtain life insurance or long term care insurance at any price, and have not been able to since my original MGUS diagnosis. It is fortunate that I have great health insurance through the company I work for. And, absent that, at least under the Affordable Care Act I can no longer be denied health insurance due to preexisting conditions.
On your PatientsLikeMe profile, you mention horseback riding as one of your passions – can you share more about that with the community?
My wife and I got into horseback riding in our mid-thirties. We both owned our own horses and showed in Hunter / Jumper (English) shows in our area. Later we purchased a training stable where we taught riding to between 200 and 250 students a week, most through five of the local park districts. That was one of the best times we had because the kids were great. I also taught the adult riding classes, which were always a hoot.
When I was diagnosed, we decided we had to put the stable up for sale. I had no clear idea how my condition would progress and we didn’t want end up having to deal with my treatment on top of all the work running the stable. As it was, I didn’t start treatment until another seven years after we sold the stable, but we had no way to know that, or to know how long it would take to sell the stable.