The first mail I opened this morning was from a prestigious research facility in California. They would like my participation in a trial to determine whether a medication approved by the FDA for other purposes can prevent and treat skin cancer.
This is the second request from the team this year because, as the letter stated, the first study ended in December when the report of possible adverse side effects in patients became known.
Oh, what a surprise. I’ve lost track of how many times research scientists have asked me to participate in similar efforts, going way back to 1984, when they offered to burn my entire epidermis off with massive doses of chemicals even then suspected of causing birth defects. Did they? Why yes!
These proposals are always phrased to inspire my spirit of public service, with a small nod toward economic reward – they’ll pay travel plus thirteen hundred dollars for my time.
Presuming, of course, I take the drugs as directed and provide tissue samples.
How does the value of my tumors compare to the current cost of oil, or gold?
How do I reconcile the fact that no study conducted to date has made any progress whatsoever in treating my disease, and all have caused deleterious side-effects?
I possess the most severe recorded case of this particular genetic cancer syndrome. The tumors were visible at age three and I had between three and four hundred removed before age sixteen (I got bored and stopped counting after awhile).
But even with so many scars I have zero interest in the these research studies. Sure, the biopsies have been an unwelcome and sometimes horrifying element of my life. Many of the scars (particularly those on my face) are disfiguring.
However: when the alternative is untested chemicals that can ruin my health in a hundred unknown ways, guess what?
I choose the scars. I choose mutilation.
I would rather be cut than cursed.