I'm not a doctor and I don't play one on TV

I'm tired, it's been a long day and I don't want to work anymore.

I write for a living. Then, when I get tired of doing paid writing, I blog as a hobby.

Go figure.

Anyway, today I participated for a bit in a discussion on HN about cancer treatment. I always struggle with such discussions.

On the one hand, I very much want to participate. On the other hand, my mental models tend to be serious statistical outliers and it makes for big challenges in trying to communicate.

This is compounded by the fact that I am not a doctor, but I probably have just as big of an ego of a doctor and you can't convince me I am just some clueless fool who has no idea WTF they are going on about, never mind that I might sound that way to other people at times. Sigh.

Here is some of my background and why I think I know whereof I speak, in spite of disagreeing with a lot of big pieces of "standard medical wisdom":

My mother wanted to be a doctor. She delivered a few babies in her teens and the woman in question was a repeat customer because she liked my mother's care better than that of a doctor. But life got in the way and got never got a medical career.

Mom was always patching up neighbor kids and she often thought doctors were dumb. When some doctor took my stitches out too soon when I was a teen and the wound reopened and ended up infected, it was my mother who got me well with chamomile tea and chamomile poultice and staying off my foot for a few days. We had tried to go back to the doctors who had botched it. They tried taping it closed with butterfly tape, which did not work.

When my dad had colon cancer in his late sixties, he and my mom were told to get their affairs in order as dad was not expected to live. When he did survive, my mother was interviewed on tape for two hours and the clinic changed their practices based on what she told them. The doctor knew that my mother had played a critical role in my father's survival. This was not just due to what the doctors had been doing.

I have been told that how she cared for my father impacted how two cancer clinics operated. My father was retired military and was receiving some care on base and some care off base. Both clinics made some changes due to things my mother did.

My dad is no longer alive. He died a few years ago, but he had survived about twenty years or so beyond his initial diagnosis with colon cancer.

I have several relatives who have had cancer, some of them repeatedly. One was Patient Zero in a study. I don't recall the details. It was long ago and far away and my brain is Swiss cheese from dealing with my own serious health problems.

I have a formal diagnosis of Atypical Cystic Fibrosis, as does my 30 year old son. We are getting well when doctors (and the entire world) claim it cannot be done.

I was diagnosed the month before I turned 36. At the time of my diagnosis, the average life expectancy for classical CF was 36.

I spent about a year at death's door, more than half of it before my diagnosis. The months following my diagnosis still involved a lot of ER visits. I would walk in and say "I am a 36 year old newly diagnosed Cystic Fibrosis patient." and watch the eyes of medical staff pop out their head and roll across the floor.

Okay, not really. But if it had been a cartoon instead of real life, they would have.

I am getting well when people say it cannot be done. This leads me to believe that my mental models for what is going on are superior to whatever crap conventional medicine believes is going on. It looks like pretty overwhelming evidence to my eyes.

I learned some of those mental models from my mother, and she has a track record for getting people with cancer well when they are supposed to die. So I tend to think whatever it is we know, it generalizes and is not just about CF.

My experience of medical conversations is getting better, but this will probably continue to be a thorny issue for me. Good luck convincing me I am some idiot with no clue just because I am not a doctor and don't play one on TV either.

That street runs both ways: I can't convince anyone else that I am not an idiot with no clue.

And the beat goes on.

Comments

Gaurav said…
You may consider contacting practitioners and researchers of Kampo medicine (mainstream in Japan). They are quite serious, and tend to be somewhat more open minded than mainstream western physicians, particularly with respect to treatments outside of the reductionist paradigm.

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