My long and remarkable cancer journey has been documented through Harvard, and peer-reviewed, published, and indexed in the literature. I am grateful to be included as an exceptional responder and an active participant in Harvard’s NEER study.
It’s been incredibly rewarding to put my story out there, and a privilege to pay it forward. For all my long-time readers, thank you for being there.
This year marks 31 years since I was diagnosed with chronic lymphocytic leukemia, still considered an incurable disease.
In cancer parlance, I have been NED—no evidence of disease—for a decade. This month marks 10 years since I cleared my bone marrow of leukemic cells, and without conventional therapy.
At this point, what does that mean? It means I have stopped chasing cancer.
Sure, I’m doing annual blood tests with my primary care, but I have not visited my oncologists in several years. My last bone marrow biopsy was in 2012.
I’ve had about a dozen biopsies over the years, and used to plead with my physicians to get them—because the marrow is where leukemia emanates, and I was avidly tracking it. But enough is enough; I’ve documented plenty and shared openly. I’m done actively looking for it. Continuing with a healthy lifestyle, I live as though I’m healed.
If you’ve been following my writing for a while, you know a few things about me.
I do not use the term ‘cured’ to describe my health status.
A 10 year response is deep and durable; more than can be expected for all but a few folks having undergone conventional therapies.
I’m celebrating a decade of NED, but I am an outlier, in uncharted territory.
Do I hesitate to write about all this so openly in case I am tempting fate? Maybe, but it’s my history, and my future, and I am putting it all out there, with no clear expectations of what happens, say, another five or 10 years down the road.
Not long ago—and I still hear about this—when a patient was five years past treatment, without evidence of disease, they were declared ‘cured’. Five, an arbitrary number—it could be 7, or 12, or longer. It doesn’t matter. What’s the point? Even long term breast cancer survivors can have a recurrence 32 years after getting the ‘all clear’.
True healing is a complex biological process, not magic.
One question I get more than any other is “What is the one thing you did that you feel had the most impact on your disease?” The answer is: there is no ‘single’ thing that was most important to my healing.
How can I possibly reduce how I’ve lived for three decades down to one profound type of activity or intervention, and then correlate that to an outcome? Does nutrition trump exercise? Does exercise eclipse sleep? Does sleep rate higher on the healing scale than hydration?
What about supplements, and stress reduction, and social interactions, and love?
Spontaneous remission is a misnomer… or a myth.
As I’ve previously written: The term spontaneous remission is frequently used by physicians unable to adequately explain a patient’s complete reversal of disease. After all, conventional physicians are trained to view things in a reductive way, attaching one action—a single drug (or two) or procedure—to a response or outcome.
I did not and will never take a reductionist approach to healing—or to studying my approach using a reductionistic trial design, which has been suggested before by my friends at Dana-Farber.
The human mind and body possess an innate healing capacity. We are each unique examples of a constant modulation of gene expression. Because of that, we still cannot accurately predict which powerful trigger or combination of triggers may activate exceptional healing.
While we know that positively changing multiple aspects of one’s lifestyle generates improved health—physical and emotional—it’s important to remember that we are constant hosts, with a biological revolving door for all ‘guests’ (friend or foe), to consider entry.
I never let up. And neither should you.
I’m 10 years out from active, detectable disease, but I’ve never let up. Many years of living my life as I do, is how I am wired. I get so much pleasure and joy in how I eat, move my body, invest my energy. It never enters my mind to revert to my old ways of so long ago. It’s simply how I’m wired, and how I roll.
Indulging in ice cream? My old Classic Coke®, French fries and convenience store coffee loaded with sugar? Not a chance. Though, if I’m being totally candid, hot corned beef, on warm seeded rye with a spread of spicy mustard does sound amazing.
Meanwhile, just between us, I plan to go off the wagon for Super Bowl Sunday and have pizza with my sons. White flour, crappy cheese, hold the pepperoni.
Yes, I live as though I am healed, not cured… even 10 years later.
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Photo credit: Jeremy Meeks
