TUCSON, Ariz. — About 31/2 years ago I was diagnosed with Myelodysplastic Syndrome (MDS) — a disease that has no cure except for a transplant, which takes a year or more out of your life. The statistics for survival and/or a good quality of life afterward are grim.
When did this all start? I had been having low white blood cell counts and was bruising from just a slight bump on my arms and legs. My oncologist ordered a bone marrow biopsy and we found bone marrow failure over 10 percent rogue cells, which were programmed incorrectly and reproducing themselves. He based the diagnosis on those results.
Before the diagnosis, we had planned a cruise in less than a month and this oncologist encouraged us to take the cruise. He suggested that once I got into treatment our lives would be over as we knew it. We opted to cancel the cruise and begin treatment immediately.
My spouse, Jim, and I had been retired 10 years as professors from the University of Arizona at the time of my diagnosis and we were enjoying a busy lifestyle. We had just finished writing, producing and directing our last of ten variety/dinner/shows at SaddleBrooke, our retirement community, and were developing our accordion duet work while looking forward to summer festivals in the Pacific Northwest.
Like many others with a rare disease diagnosis, that first night I stayed up all night searching the web for information. I found that my life span would be 18 to 24 months based on world statistics. When I checked this with the oncology team, they confirmed the statistics. What they didn't say was that those stats were based on patients who had never received treatment.
I was encouraged to avoid people as much as possible so I was housebound for about six months because of critically low white blood counts. For a period of time I had zero immunity. I was afraid of any type of infection. Jim did all the shopping and we had some really strange dinners, believe me!
To begin treatment, I had a port catheter implanted and have now been in treatment for 31/2 years having received 31 cycles of hypomethylating chemo (first Dacogen and then Vidaza), followed by a Neulasta shot. I call my treatment “7x7” — seven days of chemo followed by a $7,000 shot every 28 days.
We also decided to consult with some of the top MDS specialists in the nation. We flew to Moffitt Cancer Center in Tampa to see Dr. Alan List. We consulted with one of the best-known West Coast transplant experts, Dr. Bart Scott, at Seattle Cancer Care Center. Finally, we flew to The Cleveland Clinic to consult with Dr. Yogen Saunthararajah. All three oncologists gave us new information and new hope and said: "You are doing so well on this treatment regimen, just keep it going." No transplant, no clinical trial, no variation (also, no cruise), just the 5+2 Vidaza treatment every 28 days.
Although the treatment cramps our summer travel, we are working around it pretty well. We live in Tucson, Arizona, during the winter and travel around the Pacific Northwest in our motor coach in the summer. I receive treatment in Coeur d'Alene, Idaho, and Newport,Oregon. The treatment is what is keeping me alive by killing those rogue cells.
The best news is that,, so far, I have had neither fatigue nor infusions, which often go with an MDS diagnosis.
Jim has been with me every step of these 31/2 years and has attended every consultation. I could never have gotten through this without his constant positive encouragement. He has been my rock.
Our faith and the prayers of family and friends continue to provide consolation, confidence and cheer.
Accordion music is happy music. If we are feeling down, an hour of rehearsal for our next gig picks us up. We sing in English and German and accompany ourselves on Roland digital accordions, the most recent manifestation of this old instrument. We perform many musical genres including jazz, ‘60s soft rock, mariachi, Latin, country & western, swing and rock ‘n’ roll And, of course, polkas, waltzes and schottisches.
We have contracts for several festivals this summer, beginning with the Leavenworth International Accordian Celebration in Leavenworth, Washington, in June.
We will keep our music going as long as possible. The only down side is that I had to readjust my accordion shoulder straps and learn how to play my accordion low so it would fit under my port catheter. This is not a bad tradeoff to "KEEP THE MUSIC GOING!" Yes, I have MDS, but MDS does not have me.
Every story matters. Help us build community by sharing your story.