Quartz: A tumor stole every memory I had. This is what happened when it all came back

[LiberalArkie]

WRITTEN BY

Demetri Kofinas
3 hours ago
My brain tumor introduced itself to me on a grainy MRI, in the summer of 2009, when I was 28 years old.

It had been with me from the day I was born. Tumors like mine develop in utero. They are usually discovered in children, but no one could tell me why mine had only been found once I was an adult. It wasn’t cancerous. Perhaps this tumor at the base of my brain, near the pituitary gland, had reached maturity long ago and would never grow further. That would mean I had nothing to worry about. Or, maybe it had just woken up, and was growing for the first time. In three months, I could be blind. There was no way to know.

Certainty only came with surgery, whose outcomes were presented to me in the form of averages and standard deviations. Thirty percent risk of blindness. Forty percent risk of morbid obesity caused by hypothalamic damage. One hundred percent risk of complete pituitary loss, and hormone replacement therapy for life. And the risk of doing nothing? Undefined.

Assessing my type of tumor—which is known as a craniopharyngioma—the surgeons each gave me their different best guesses as to what the risk of inaction was. Those guesses varied wildly. There was no way I could rely on their predictions to make a decision.


Snip: A very good read



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[djean111]

1. Wow. Thank you.

[vanlassie]

2. Huge K and R.

An acquaintance of mine has a book coming out this week, with similar insights.
http://sophiesabbage.com/book/

It's called: The Cancer Whisperer