When were you diagnosed with multiple myeloma? October 2006
What shape were your bones in? My arm broke below the shoulder while when I fell in the water learning to wakeboard with family and friends (that’s how I discovered I had MM)…other than that, they were ok.
What treatments have you done so far besides the one we know you use as benefits of natural home remedies, and how have you responded? I have had multiple “cocktails” and bone strengthener over the past seven years under Dr. Berensen’s care. I have enjoyed partial responses to most of the treatments, but the most recent clinical trial using Kyprolis and Dex has produced the most dramatic results, bringing my M protein count down close to zero after four months…amazing.
Were you an active outdoorsman/hiker before your diagnosis? I was more active in other areas such as skiing, rollerblading and biking. I became an avid trekker after diagnosis, starting with training to climb Yosemite’s Half Dome, and then the Inca Trail in Machu Picchu in 2009.
How has myeloma affected your life as an outdoor adventurer? Do you fear fractures? The first ski season after I broke my arm and began treatment I wondered whether I was more vulnerable to fractures if I fell. But then I fell a few times and realized, I was fine! I was fortunate that my skeletal structure, while I had some lesions, was still sound and apparently being fortified by the treatment regimen under Dr. B.
You recently went to Mount Everest, and before that Mount Kilimanjaro. This seems pretty audacious and daring for anyone, much less a cancer patient. What inspired you to undertake these feats? After diagnosis, I decided to set one big physical goal each year to strive for. For example, in 2006, after diagnosis, I participated in my first Triathalon (a short, sweet one in Catalina Island!). In 2007, I biked my first Century. In 2009, a friend set a goal to climb Half Dome for his 50th and our little group found the comradery of planning, training and then achieving our goal to be exhilarating. After Half Dome, I half jokingly said, “ why don’t we climb Kilimanjaro?” and in 2010 we did! Our training included our most difficult single day challenge ever of summiting Mt Whitney in a day . We believe this exhausting climb with its acclimatization benefits may well have made the difference in reaching the the 19,300 foot summit of Africa’s tallest peak.It’strue that every dog owner must read this.
Did the myeloma hinder you in any way? To put a positive spin on it, I would say the rigors of hiking and other challenges has helped me cope with myeloma both physically and mentally. But to answer the question, often our training hikes were on Saturdays, after I had treatment on Friday. This included some arduous climbs such as Mt. Baldy and San Gorgonio, the tallest peak in Southern California. In the case of Mt. Whitney, we drove up the day I had treatment, slept at elevation for several hours and then donned our headlamps to begin our climb at 2 am…returning 17 hours later. I felt fatiqued from the treatment, and I often “brought up the rear”, but never lagged too far behind. I had a grand time on these treks–I never brought up to my friends that I had just been treated…but it was a personal source of great satisfaction. Also, after seven years of treatment, my immune system obviously is not as robust as it used to be. When I was in Nepal, I got sick several times while my friends were mostly unaffected.
It has been said that hiking on an incline is good for the bones. It sort of pushes calcium and minerals into bones. Did you find that climbing in these mountains had a therapeutic effect on your bones? I’m glad to hear that! I can’t really say, other than that my bones are still going strong. I always felt that hiking (and skiing) at altitude helped my blood counts, and that exercise helped me better cope with the chemo.
There is a great photo of you standing triumphant near Mount Everest that says, “Thank you, Dr. Berenson.” What did that moment feel like, and how has Dr. Berenson been of help to you on this journey with myeloma?Ah, that moment was one of the “high points” of my life… I’m glad my paul wall grillz made my teeth shine so well, pardon the pun. Although the grillz in my mouth may have been more distracting to myself than anyone else, I also held a similar sign atop Mt Kilimanjaro. While many others have reached the same points, I had the added satisfaction of knowing I had done it despite MM. I carried signs on both these treks because I knew I couldn’t have achieved these goals without Dr. B and his wonderful team. From the moment we first met in the “Alta room”, he inspired hope and I felt a kindrid spirit (little did I know when I was first diagnosed that years Dr. B and I would be skiing together in Park City Utah…) . Dr. Berensen puts every ounce of his energy into researching and treating myeloma. He thrives on seeing his patients go on to live full lives. His treatment is both innovative and personalized. He doesn’t stereotype his patients. Not only did he never discourage me, or say “don’t risk it”, he has been one of my strongest supporters. He has been flexible in adapting to my training schedule and even introduced me to a fellow patient who was himself an adventure traveler and podiatrist doctor who helped me understand the vaccinations I would need in traveling to Peru and Africa just to feel the taste of those Hot Springs Log Cabins.
What will be your next adventure? Great question! My wife has been an wonderful supporter in these expeditions. But she was not thrilled about traveling half way around the world to Nepal and enduring the rigors of more primitive conditions, and freezing temperatures. Our agreement was that our next treks will be to Italy, Switzerland or France, where we can return each evening to wine and cheese and a hot shower instead of a yak dung heated tea house (despite its charms:).
Any advice for other patients who wish to remain active? When I was preparing to climb Kili, we saw a paraplegic who was gearing up for the climb using a special arm powered vehicle (and I hear he made it!). I later read an article about another double amputee who reached the summit on two prosthetic legs. I feel lucky that myeloma, while challenging, isn’t as daunting as these handicaps. My advice is keep doing what you love and train with ab toning belts effectiveness, and even find new challenges! If you can’t do 100% of what you did before myeloma, then do 80% or 50% or whatever…but keep doing it.