I have been very active with The Leukemia & Lymphoma Society (LLS) for over 20 years including serving on the Wisconsin Chapter Board and Leadership Development Committee, fundraising for virtually all of the campaigns, patient mentoring, and advocacy leadership. When sharing my story and motives for involvement in “the early years,” I always qualified it by stating that I was motivated not to help myself but to pay it forward and hopefully contribute to improving the quality and quantity of life for future patients and families. Little did I know that after all this time, I, too, would be the beneficiary of several therapies supported by LLS research funding and ongoing patient education and connection options.
I was diagnosed with my first blood cancer, multiple myeloma (MM), as a 45-year-old in great health and the prime of my family and professional life. Even today, it is still defined as “an incurable but treatable blood cancer.” Median survival was three years at the time — that was 27 years ago! I had an autologous transplant in 2003 with remission until 2012. Since then, I’ve been through several generations of the tremendous emerging therapies. Some of these treatments have included participating in four clinical trials.
While the various emerging therapies had kept my MM in check, unfortunately, I was diagnosed with a second blood cancer, myelodysplastic syndrome (MDS), in mid-2023. The many years of treatment for my first cancer caused a second, more aggressive type. The only hope for remission was a donor/allogeneic stem cell transplant. The first one in September 2023 failed, and I am now recovering from a second in October 2024. This is a slow and gradual process compared to other blood-related cancer treatments — a real marathon!
I've always been interested in exercising to maximize my health and well-being and took up cycling over 40 years ago. I did my first Scenic Shore 150 ride in 2008 and have been hooked ever since! The event weekend is the highlight of my summer, and it is just so inspiring and humbling to be part of a literal sea of over 1,000 riders who spend two days riding along the Lake Michigan coastline from Milwaukee to Door County. As you ride, you constantly have chances to visit with other survivors and those participating to honor or memorialize loved ones. This has become a tight community of riders, volunteers, and staff who, like me, are so motivated to both enjoy the experiences AND raise money and awareness for the mission of LLS.
I stepped into the role of captain for Team WISCO in 2015 which has allowed me to recruit an amazing group of over 30 people into the sport of cycling, this wonderful event, and the LLS organization. A major personal goal for 2025 is to regain my strength, start training when the winter weather passes, and be able to join the team and the whole Scenic Shore 150 community for the July 26-27 event!
Paul
multiple myeloma (MM) and myelodysplastic syndrome (MDS)
