#WhyIPMC guest blog by Skip Jones, first-year Living Proof rider, Team Steam Cell Cyclists
Why am I riding the PMC? I am an avid cyclist. Years ago, many of us saw a colleague come down with Multiple Sclerosis. We wanted to do something to help. We formed a cycling team and rode the Great Mass Getaway which is a 150-mile fund raising event for Multiple Sclerosis. One year I was the top fund raiser. I really enjoyed being part of a team and raising funds for a good cause.
Being an avid cyclist, I would set personal cycling goals each year. It started off at 4,000 miles / year and that was achieved! However, as I grew older, it seemed that the routine 50-mile bike rides were becoming more difficult. Hence, I wasn’t enjoying the long rides that I previously liked. This started back around 2012. My daughter would say “Dad, you aren’t in your twenties anymore”. Hence, my goals were lowered to 3,500 and finally 3,000 miles / year, again all achieved. However, in 2015, I remember saying to my primary care physician that I was getting exhausted doing long bike rides and would plop when I would get home. He thought it was a condition that a prescription would cure. While it helped, it didn’t solve the issue. We now know this was the start of something more serious.
In January of 2022, I had blood work done for my annual physical. My new primary care physician noticed a low blood cell count and being concerned, he scheduled me to be seen by a hematologist at Lahey Clinic. After testing, it was confirmed in April that I had myelodysplastic syndrome or MDS which is a form of blood cancer. I was asked by my hematologist where I wanted to get treated. My response: If I live in New England, there is only one place: Dana-Farber! They forwarded my medical records to Dana-Farber and I was then scheduled to meet with Dr. Antin. He informed me that the only treatment for MDS was a stem cell transplant. I knew after the first meeting I was in great care and with the best people to become healthy again.
I wanted to become healthy so that I could enjoy traveling to see my family who live far away. Especially my 5-year-old granddaughter who lives in Atlanta. Also, I could not wait to get back into long distance cycling. Last year, if I got 5 – 10 miles in, I felt grateful. But I had to abandon cycling in July as MDS was taking hold and I had little to no energy to cycle.
While waiting for Dana-Farber to find a donor and schedule my transplant, I was watching the news paying special interest to any story about the PMC. One clip highlighted a doctor from Dana-Farber who was on a team to raise funds for his unit. His unit: the stem cell transplant unit! After seeing this clip, I knew that it was karma and I had to become a member of this team. I emailed the doctor that was interviewed (Dr. Corey Cutler) with the subject line: Potential New Member of the Data-Farber Stem Cell Cycling Team giving him details about my condition and my love for the sport. He wrote back saying that I was now an official member of the team! I now felt like more of a family member than just a well-cared for patient.
I had my transplant back on September 30th which is now my second birthdate. I then started the recovery process. For the first two weeks after transplant, I needed to be closely monitored for any signs of rejection. All tests indicated that the transplant was successful! Two weeks after the transplant, I was allowed to return home. However, I was still being monitored closely with weekly appointments. Due to my progress, those weekly appointments were changed to monthly appointments in January of 2023. The care I have received from Dana-Faber has been exceptional!
During this time, you also need a support network to keep encouraging you! I have close to 100 “cheerleaders” who have been supporting me through this process by emails, phone calls, text messages or social media posts. They consist of college buddies, friends, co-workers, and family. Two of my biggest cheerleaders are my son and daughter. My son (who lives in Seattle) wanted to be with me during the actual transplant and took care of me afterwards. This is a picture of us with me holding my donated stem cells right before the transplant.
