Photos and text used with
permission of Michael Katz.
In 1990, I was 37 years old, married with three children ranging in age from 5 to 10, working as a partner in a global management consulting firm. The last thing I expected to be behind my newfound limp was cancer. And yet, there it was. The diagnosis was multiple myeloma, a terminal, incurable cancer of the bone marrow.
It is now more than 20 years since I received that diagnosis, which at the time seemed like a death sentence. In the intervening years, I have endured a number of orthopedic surgeries to repair the bone damage that is a hallmark of multiple myeloma. During this period I also received a diagnosis of rectal cancer, found early thanks to a routine colonoscopy, treated with surgery, and presumed cured.
There has also been incredible joy in life in those years, my wife and I watching our three sons grow up, celebrating their Bar Mitzvahs, high school, college, graduate school, and medical school graduations, and weddings. I have also been blessed to see the arrival of our grandchildren, now numbering three with a couple more on the way. The first, Ruth, arrived just days before the 19th anniversary of my diagnosis.
At first, I knew very little about multiple myeloma and, as the diagnosis came before the advent of the internet, I had difficulty finding information or connecting with others fighting this cancer. Three years into the struggle, I connected with the International Myeloma Foundation (IMF) and quickly became involved in advocacy and support for fellow patients and caregivers. I began doing telephone counseling with patients and caregivers, which I still do. With the arrival of the internet, I began to help the IMF develop its website and, most recently, helped with the launch of an iPad app. I started listservs (email discussion groups) on the topics of multiple myeloma and amyloidosis with more than 2,200 subscribers. I am a regular speaker at the IMF's Patient/Family seminars, and as I began working as a patient advocate for the Eastern Cooperative Oncology Group (ECOG), my advocacy work moved beyond myeloma to other adult cancers. I was elected chair of the ECOG Patient Representative Committee and later chair of the Coalition of Cancer Cooperative Groups Patient Advisory Board. I was also appointed to the then newly formed National Cancer Institute Director's Consumer Liaison Group and later was asked to chair that group, I also became a patient consultant for the Food and Drug Administration, working on cancer issues.
I cannot begin to describe how satisfying my advocacy work has been - turning what is often a bad nightmare into a calling, a mission to help people work through what is often a frightening, paralyzing experience. Speaking with newly diagnosed patients and their caregivers, I can share that I was diagnosed 20 years ago, and I see an immediate positive effect. Spending the time to talk and to understand their situation, offering advice about what to ask the doctor, explaining the likely reasons for specific treatment recommendations they have received: I can see these matter-of-fact actions helping to ground people, regaining some sense of control.
Working in the broader advocacy roles, such immediate gratification is not as obvious. The highlight of my work as an advocate in clinical trials was an ECOG Trial, E4A03, looking at standard- versus low-dose dexamethasone in combination with Lenalidomide in newly diagnosed patients. I had suggested testing lower doses of dexamethasone (a powerful steroid used in many myeloma treatment regimens) because the side effects of the standard dose can be horrific and I had been able to achieve good results with lower doses. I had heard the same from other patients. The chair of ECOG's Myeloma Committee, Dr. Rajkumar, integrated this idea into the E4A03 trial design. E4A03 was halted early because a clear survival advantage was observed for group in the low-dose arm || 96% alive at the 1-year mark vs. 87% for those on the standard dose. The result was an almost immediate change in the standard of care moving to lower steroid doses in myeloma treatment.
CDMRP offered an opportunity to become more directly involved in colorectal cancer as a consumer reviewer. The CDMRP review was intimidating at first because my knowledge of the science of colorectal cancer was pretty thin compared with my knowledge of blood cancers like multiple myeloma. I found, however, that CDMRP provided excellent support for consumers, so, along with the respectful attitude of the other reviewers, I overcame this initial discomfort. I am happy to be able to represent my fellow colorectal survivors in this very important grant program.
At this juncture, I am still fighting my personal battle with myeloma, which is incurable but treatable. I continue to live life to the fullest, and I take great comfort from my ability to give back to the people that have helped me survive these two cancers and to help my fellow survivors. When life gives you lemons, make lemonade!
Last updated Wednesday January 27 2016