multiple myeloma (MM)
I have been very active with LLS for over 17 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 a 45-year-old in great health and in the prime of my family and professional lives; had a general physical for a large term insurance policy that was denied due to “an abnormal lab result.” A series of tests confirmed the diagnosis of multiple myeloma – to this day still defined as “an incurable but treatable blood cancer.” Median survival was 3 years at the time - that was 25 years ago! I decided to keep my diagnosis very close to the vest to spare worrying my children and others about something that did not affect my outward life until I needed treatment. Little did I know that this would be the case for 6 more years.
The initial diagnosis REALLY made me aware that life is fragile and finite, and that it was important to be grateful and enjoy the people and all the little things that make up our lives. You need to live responsibly, but also be careful about putting joyful moments and experiences for another day that may never come.
Since I was asymptomatic and treatments at the time were either a 30-year-old ineffective harsh chemo regimen or an emerging early phase clinical trial for autologous stem cell transplants; hence the practice was to watch and wait. Based on today’s many targeted therapy options, I would have immediately been started in treatment.
I had the auto transplant in 2003; then remission until 2012; and have been through several generations of the tremendous emerging therapies since. Some of these treatments have included participating in 6 clinical trials.
I consider myself a “lifelong learner” and have applied that to staying informed about my cancer and emerging treatments and maximizing my health and holistic wellness. LLS provides excellent online resources; 1:1 patient connections; webinars; conferences and other avenues for patients and families to stay current with sometimes overwhelming amounts of information.
Based on dealing with myeloma for nearly a quarter century with good results, this has just become a part of who I am – personally and for my family and friends. I’m extremely lucky and grateful each day to be in this position compared to so many other patients.
I have served as a First Connection Mentor for myeloma patients across the country for many years. Most of these patients are newly diagnosed and just overwhelmed physically and emotionally. They trust their doctors but want to talk to someone who is dealing with the disease, treatments, and survivorship. I may get more out of these visits than the new patients, as I’m a living example as the longest myeloma survivor in Wisconsin. When they understand that my rare experience may become more the norm with all the new amazing treatments, it gives them a priceless commodity – HOPE!
Based on having very good employer-based insurance while working; and Medicare since retiring, I have been fortunate and not experienced unreasonable premium or OOP costs through what has been over $1 million in the life-time costs of my care.
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 SS 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. We are all so looking forward to reuniting this July for the first time in nearly three years!
I was very surprised and honored to receive the LLS National Spiral of Life Award in 2020. It honors an individual each year who excelled at supporting the mission through fundraising and advocacy. The Wisconsin staff put me up for this without my knowledge and it really meant a lot to me!
George Harrison’s “All Things Must Pass” has been a favorite album and song for now 50 years. It is a beautiful song, but I also believe in a variation of his message – that when life seems to present major challenges, a reminder to put things in perspective and believe that “this too shall pass”.
I’ve practiced meditation and mindfulness for nearly 50 years and the core lessons always return to this now somewhat cliché saying – “Learn to BE in the present moment” – it is really the only place you can ever be unless, like most of us most of the time, we run on autopilot. We get trapped into rumination and regrets about the past (but can’t change it) or anxiety about the future (it will come, but you can’t travel forward either). So I try to take things moment by moment and day by day.