In August 2014, at age 48, I was literally in the best shape of my life. I was an avid cyclist, averaging more than 150 miles per week, leading groups of riders for my cycling club, and completing multiple 100-mile century rides in a single season.
Over the course of just a few days, while cycling, I noticed a sudden setback in my performance. Virtually overnight I lost stamina, speed, and endurance. Roads or hills I had ridden countless times before instantly became unmanageable. Thinking I was battling the flu or a virus, I visited my doctor. Blood tests revealed an abnormality. Less than five days later, I received the news, a biopsy confirmed that I had B-cell acute lymphoblastic leukemia (ALL). Like anyone that is newly diagnosed, hearing those words was traumatic and overwhelming. In the day or two following the diagnosis, I recall waking my wife in the middle of the night to ask her what disease I had. Stress and fear are powerful emotions, and they caused the word “leukemia” to temporarily be blocked from my mind. I was so frustrated I had to write it down and keep the paper in my pocket and on my bedside table.
Thanks in part to research funded by The Leukemia & Lymphoma Society (LLS), I began a multiphase clinical trial chemotherapy regimen that was originally developed for pediatric patients who commonly battle ALL. This approach is improving outcomes for adult patients who can handle the rigor of the multiyear treatment. Over the course of the 40 months of treatment, I spent more than 60 days in the hospital, completed 27 spinal infusions, had countless blood and plasma transfusions, and endured 1,213 consecutive days of complex chemotherapy. But who’s counting? It was a difficult and complicated protocol. I completed treatment in January of 2018 and have successfully stayed in remission.
Today I am thankful to be back to “normal” activities, doing virtually everything I want to. I’m back on my bike, skiing, working, and traveling with my wife. I try to focus on the positives and manage the fear. There is a silver lining. I know how fortunate I am and have a renewed sense of gratitude and learned not to sweat the small stuff.
As part of my recovery, I support the efforts of LLS. My family and I organized a local cycling event with more than 100 riders and raised awareness and funds. I continue to fundraise annually as part of Light The Night (LNT). And recently, I completed training to become an LLS First Connection and Patient and Family Outreach volunteer where we provide patients and their caregivers with outstanding educational, financial, medical, and social resources, and serve as a connection point for patients who have similar diagnoses as I did. Being involved with LLS is incredibly gratifying and important work. We’re simply in the business of helping people and making their lives easier during their darkest days. I know that LLS advocacy and research is driving meaningful change and innovations that are saving lives. I encourage everyone to pay it forward.
I credit research and science, my passion for cycling, the endless support of my wife (my angel on earth), family, friends, and amazing medical professionals as major contributors to my recovery.
Ira
B-cell acute lymphoblastic leukemia (ALL)
