Myeloma Patient Advocate William K. Casler says 'Just Live'
As far back as I can remember healthy living and physical activity have been my guiding lights. For years I ran, hiked, cycled, played squash and tennis. Intensity was my middle name. It even followed me into the workplace where 60 hour weeks were the norm.
Then, at age 60, my family doctor scratched his head and asked: how can someone so active and fit be so anemic? True, I had begun to complain of fatigue during exercise. What was happening?
In November 2009 a clinical onco-hematologist answered the question. I was diagnosed with multiple myeloma. Like so many, I was unsure what that is and even what it means. I was put on a monthly watch.
In January 2010 I spent 5 days in intensive care with a lung infection. I used my time there to plan a 14-day hiking trip through the Sacred Forest on Ise peninsula in Japan in the following Spring. I have always been an intrepid traveler and always set myself challenging goals.
After all, arrangements had been made, I submitted my monthly labs to the hospital for the green light to travel. Then, the hematologist called and recommended that I cancel everything to begin urgent therapy for a bone marrow transplant. The myeloma, she said, was out of control.
Thus began my myeloma journey and a new chapter in my life. Fast forward to September 2021.
After 11 years and 5 lines of treatment, I have traveled far, figuratively and literally. I am 73 years old and my mantra remains the same: great vitality, strong determination. I live life to the fullest and face tomorrow with confidence.
At the very beginning of my myeloma journey, I took a vow to just live. I was never fearful of the disease. I never allowed it to overwhelm me. I never let it set limits on what I could do or who I am. What I did do was accept it as my new reality.
I also set out to improve my knowledge of multiple myeloma and its treatment. Ultimately I became a patient advocate. But what I did not do was fundamentally change my life in any way. I continued on my life’s journey and did what I always do: just live.
I spent the first 20 years of my life in California, then came to Europe, studying at university in Germany for several years before moving to France, where I have now lived since 1971 with the exception of 5 years spent in the UK in the 1990s.
I should point out that I have a family: a wife of 50 years, a daughter and a son in their mid-40s, and four grandchildren. They are a big part of my motivation.
I began this short account by saying that physical activity is very important to me. Since retiring at age 65, in 2013, I have made it a point of exercising at least 2 hours every day. On a yearly basis, in fact, I manage almost 2 hours 30 minutes per day. Since 2018 I have added 15 to 30 minutes of meditation to my day.
Physical activity is one of the pillars of my positive attitude and my (relative) "good health". Seven years ago I added yoga to my routine – 5 times a week at the studio. I still play tennis twice a week, and I walk or cycle at least an hour every day. Twice a year I embark on two long cycling trips somewhere in Europe and in Asia. By long I mean between 1500 and 2000 km (1000 miles plus). This past summer I completed a 1300 km (800 mi) bike trip over 16 days in France and Switzerland.
Since 2013 I have cycled throughout Europe in the summer months and around Southeast Asia in the winter months. Never has myeloma hampered me in any way from pursuing my goals. To many that may not seem possible, but it is absolutely true.
Surely I am blessed in some unfathomable way. Yes, I have benefited from the best medical treatment available in France, where healthcare is cost-free. But I have also developed a mindset: be positive, be active, be grateful, and just live.
William K. Casler