Cancersplaining 101

If I had any moments of doubt about why I got cancer or what I should do to get rid of it, those answers should have been cleared up for me quickly by the many unsolicited pieces of wisdom dropped on me by friends and strangers alike when I revealed my diagnosis. By wisdom, of course, I truly mean a range from insane cruelty to magically delicious nonsense. This was not about sharing interesting articles or asking whether I had heard anything about Treatment X. Rather, there was a surprising surplus of individuals ready to indict me for what I did wrong and then walk me through what I should be doing if I wanted to live.

Becoming my own expert

The irony, of course, is that I had solicited terrific information and advice from actual experts in the fields of lung cancer research and treatment. I already knew the most scientifically sound path to take, as well as the biological mechanisms facilitating my cancer's growth. While not a doctor myself, I did take a science course or two in college and I did pay attention in my high school biology and chemistry classes. Surprisingly, that was more than enough to familiarize myself with the basic lingo my oncologist uses and to help me navigate the top-level summaries of journal articles on PubMed.

After my diagnosis (and truthfully, even well before that), I familiarized myself with quite a bit of data from the National Cancer Institute. I wanted to understand my condition and my options as well as possible. That meant learning the differences between Small Cell and Non-Small Cell, and the sub-categories that came beneath. Then it meant refreshing my understanding of cell division, growth, and mutation. It meant digging back in memory to an image of protozoa under a microscope, and my high-school-self waiting impatiently for them to divide or eat or just swim around the glass slide before I cracked it by zooming in too close.

Spotting myth from fact

I may not remember everything I was supposed to learn in my freshman biology class, but my fifteen-year-old brain did start the summer knowing that blood alkalinity is tightly regulated by the renal and respiratory systems, and no matter what you ate or drank it was impossible to alter that fact. I also understood that glucose remains the basic fuel for the human body -- the only fuel for brain cells -- and that the body would break down whatever reserves it had in fat or muscle protein to make more glucose as necessary if it was not getting enough from the food we eat.

So I was admittedly stymied when people came to me insisting that I could starve the cancer within me, or kill it by adjusting my body's pH levels, or cleanse it away with crystals. Nearly four years past my diagnosis, of which the past three have been heavily devoted to writing about lung cancer, I still have people coming to me and insisting that I am going about my treatment all wrong.

As to what the cancersplainers say...

No small number of the people approaching me online are adamant that there is a huge conspiracy to hide or prevent a cure. An equally sizeable contingent is convinced that I could cure myself if only I ate the right way (or, for a minority of them, simply healed myself emotionally). One thing all of these cancersplainers do have in common, though, is that they do not share my experience. And, aside from their absolute certainty that what they believe is the real truth, they generally have no foundational knowledge beneath what they are talking about.

I always try to believe that the advice of cancersplainers comes from a good place (even when the implications that I am responsible for my own disease seem downright mean). I habitually thank them for thinking of me and trying to be helpful before letting them know I have already examined that option or, in cases where the advice is actually dangerous, gently correcting them on the safety of that approach. But I have long since given up hope that this behavior would stop.

Remaining confident in my decisions

There is a special kind of arrogance in human nature, I suppose, that allows us to assume our vision of the world is universal, that our views must be at the very least self-evident, and that what we want to be true (for whatever reason) trumps the need for evidence or scientific inquiry. Riding the train of one's cancer journey leaves patients ever open to the spreading legs of fellow passengers who have no problem pushing into our space without invitation. It takes a gentle but firm hand in return to keep them on their own seats, and maybe open their minds to the idea that their absolute certainty does not and cannot apply, and that maybe it is not so absolute after all.

Editor’s Note: We are extremely saddened to say that on October 21, 2018, Jeffrey Poehlmann passed away. Jeffrey’s advocacy efforts and writing continue to reach many. He will be deeply missed.