By: James Bond
This survivor put the pedal to the metal and it sure paid off! On your mark, get set, be inspired!
In 1992, I was diagnosed with stage-3 multiple myeloma, an incurable blood cancer. At the time, I was told that at most I would live three years. That was 26 years ago.
Since my diagnosis, I have seen our sons marry, been able to know and enjoy our grandchildren, and to be part of many good times. The unwavering support from my wife, Kathleen, our sons, my sisters, other family members, friends and an excellent medical team, all were critical to my surviving.
A Cleveland TV station’s interview describes how cancer has affected our family and why we are passionate about helping other patients. See the following link: http://www.cleveland19.com/clip/14207637/43-focus-pan-ohio-bike-ride-american-cancer-society-part-1
Fighting an incurable cancer felt hopeless. However, we gained hope through Kathleen’s library research—there was no internet in 1992. We read articles by leading myeloma doctors and contacted several of them. They agreed with our University Hospitals of Cleveland (UH) medical team’s treatment plan. As well, connecting with a five-year myeloma survivor also helped.
I had three stem cell BMTs at UH in my first ten years. Two were my own cells, and one was from my matching sister, Becki, who fears needles. Her courage in harvesting stem cells inspired me, as did other family and friends who donated platelets.
After ten years, the myeloma was out of control, and I was told hospice was next. We refused and drew upon knowledge gained from second opinions from Mayo Clinic specialists. We learned of a promising clinical trial drug, but it meant moving to Boston where Dana Farber had an opening. When we arrived, I was very sick, unable to eat, running a 105-degree fever and my kidneys were shutting down.
After a few weeks the experimental drug put my cancer into remission! I became a clinical trial believer, and when the myeloma relapsed, I entered more clinical trials, which kept my myeloma under control for another decade.
Kathleen is a long-time American Cancer Society volunteer leader and is involved with ACS Hope Lodges, where patients and families can stay, without charge, while being treated at cancer centers far from home. If we had not been able to afford relocating to Boston, I would have died. This led to Kathleen founding and co-leading the ACS Pan Ohio Hope Ride (POHR) to raise awareness and funds for the 34 Hope Lodges. We are not cyclists, but we wanted to help patients gain access to leading treatments. For 11 consecutive years, I have pedaled four days and 328 miles to raise funds for Hope Lodges. I am training to ride again. See POHR.org.
After my sixth POHR, I was diagnosed with a secondary cancer, AML. My only chance of survival was a BMT from an unrelated donor. Our UH medical team drove the AML down and located a match on the BMT donor registry. But, they concluded I could not survive another BMT, due to my prior treatments. The doctors changed their opinion when they learned that recently I had pedaled my bike 328 miles across Ohio.
I received the donor’s cells and achieved AML remission, where I remain today. Kathleen’s POHR saved my life! I have chronic GVHD, affecting my eyes mostly, but we have found ways to manage these and other side effects.
We are passionate advocates for cancer survival and enthusiastically share our story with support groups throughout the U.S. Patients can contact me at firstname.lastname@example.org.