Love and nonsense

They mean well. They really do. They love me and they want me to be okay.

I repeat this to myself, often through gritted teeth, whenever someone sends me information about the latest all-natural “cure,” or sends me books and documentaries and websites claiming to unveil the “truth” about cancer and how my doctor is part of a big pharma conspiracy.

I believe that they believe these things; my friends and family are honest people. But that doesn’t make it true. In a media landscape where anyone can pretty much say or publish anything they want, it can be hard for a layperson to tell the difference between solid science and anecdotal evidence laced with hype (or even outright quackery).

When I was first diagnosed, research was my therapy. My small attempt at controlling something utterly uncontrollable. Knowledge is power, right? So I read everything I could about colon cancer, and cancer in general, from as many reputable sources as I could get my hands on. I pored over my pathology, CT scan and genetic testing reports, and searched Google Scholar and pubmed.gov for all the open-access scientific papers I could find with relevant matching terms. I connected with other patients in person and online to swap treatment stories, tips, and research leads. I wrote up my case history to share with as many smart people as possible, in case they had any ideas.

And of course, I consulted doctors–and was lucky enough to get an appointment with the guy everyone agreed is the top of his field in this town, a humble giant who puts up with my zillion questions and pretends we’re equally well-informed even though he’s been studying this for decades.

All this research was like a full-time job for a while (fortunately coinciding with the paid medical leave from my actual job). But I think it was worth it. I’m still a layperson, but now I speak the bizarre shorthand of drug names and surgical histories and tumor mutation acronymns unique to my particular type of cancer. For good or for bad, I pretty much know what all my treatment options are before my doctor brings them up. And I know that he’s constantly pivoting in response to the latest research, as hungry as I am for better answers. I know he’s on my side.

This is why it feels mildly insulting–to both me and my doctor–when someone thinks that their two minutes of online research has just uncovered something completely novel that will cure me. (“You just need to…X!*”) Maybe these things have worked for a friend of a friend or someone you read about online, and that’s great. I am genuinely happy for them! But every case is unique; even the same general types of cancer can be genetically quite different from each other in different individuals. That’s what makes it so damn hard to cure big-c Cancer.

And by the way, it feels like an outright gut punch when someone suggests that chemo isn’t necessary at all. It’s hard and awful and of course no one would do it at all if they had a legitimately better treatment option available.

I could go at length debunking specific claims I’ve seen, but for now, I’ll just say: Please trust me that I’ve looked into all the viable options in my case, and this is the best one for me right now, sucky though it is. I need support, not second-guessing.

And I love you, too.

*Eat more carrots. Give up meat. Give up carbs. Give up sugar. Fast. Juice. Take Chinese herbs. And on it goes.

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