Published on March 5, 2018
In 1996, when I was diagnosed with CLL (chronic lymphocytic leukemia) at age 45, I thought I would soon be dead. Esther and I had two young children, I had been a successful news reporter and producer, and I had established—with Esther—a growing patient education company. I wasn’t ready to die but had some satisfaction that my life to that point had been well lived, and maybe that was enough.
Fortunately, that is not that what happened. The CLL treatment and Phase II clinical trial I was directed to by other patients in the early days of the Internet paid off beyond what anyone had hoped. I had no additional treatment for 17 years. There was another shoe to drop 11 years post-CLL treatment with the diagnosis of a second blood cancer, myelofibrosis, scarring in the bone marrow. Maybe it was caused by the earlier CLL regimen, maybe not. But again, my good fortune was that there was new, effective treatment: a cancer gene-inhibiting daily pill. It has controlled this second cancer for almost five years.
Of course, the bottom line with surviving cancer(s) is that you get to live a fairly normal life. I have. And our just-completed 18-day vacation in Ecuador is a celebration of the effectiveness and durability of the treatments I have received and the expert healthcare and innovative medical research (and decent insurance coverage) that has made it all possible.
The trip to Ecuador required physical effort and stamina. Years ago, at diagnosis, I would have never envisioned this was possible for me. Esther and I hiked, floated and snorkeled throughout the Galapagos Islands (you’d love it!), hiked mountain back roads at over 10,000 feet, and, most notably climbed extensively up and down volcanos at 16,000 feet. Yes, my heart pounded, and I was often out of breath. But those were reactions of a healthy person, not one debilitated by cancer. At 67, I feel blessed that I could make this trip and enjoy it to the fullest with my wife of 32 years and cancer caregiver for 22.
To those who are reading this: Thank you for your medical innovation; thank you for your quality care, thank you for your friendship and emotional support.
Today, with some cancers more of us are able to live well even after our diagnosis and extensive treatment. Some of us are lucky enough to be cured. But even when we are not, when cancer is beaten back once or numerous times, we are living better than ever. Sadly, this is not the case still for too many. But for more of us, physically demanding trips to far-off places ARE possible. The fact that I have been in that group is something that has been thrilling for me.
None of us knows what lies ahead or when or if cancer will “win”. But, for me, throughout February, up and down mountainsides, it didn’t. And for that I will forever be grateful.
I welcome your comments and your stories too. Please write to me via firstname.lastname@example.org.
I wish you and your family the best of health!
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