"Science is eventually going to figure this out." My guess is that that’s a principle belief (or hope) of anyone who’s afflicted with a rare condition or disease. So it follows that if you have a real chance to actively help science fix something, you should take it. Regardless of any inconveniences that could arise. I’ve been given that opportunity.
Last night I started taking a pill called Vosmodegib (marketed as Erivedge). I know, it really just rolls off the tongue. Within two or three months, most of my hair will be gone and I’ll have lost my sense of taste. Hooray, research?
Let me back up a bit.
Roughly six years ago, I was diagnosed with nevoid basal cell carcinoma syndrome (NBCCS), also commonly known as Gorlin syndrome — if the word “commonly” can even be associated with such an infrequent diagnosis. I’d had a barely visible mole removed near my nose for cosmetic reasons. Days later, the surgeon called back and delivered the grand news: I had BCCNS. Things were supposed to change then. The sun — which triggers growth of basal cell carcinomas — was to become my mortal enemy. To be avoided at all costs. When I did venture outdoors, they said, I should coat myself in sunscreen with a very large SPF number on the bottle.
Confession: aside from making sunscreen part of my morning routine each day, I’ve done a piss poor job following those directives. The life I live now is the same as it was before doctors cut into my face and scalp for a dozen Mohs surgeries. (I attribute quick healing and a lack of any glaring scars to my age. And luck.) It’s also remained the same through ten odd sessions of photodynamic therapy.
With all of that said, I’m lucky. Yes. Lucky. Do some Googling and you’ll quickly see that this disease can manifest itself in much more severe and cruel ways. Noses, ears, and even eyes are sometimes sacrificed. That latter scenario is one I’ve consistently dreaded: I’ve only got one eye with adequate vision. If that should ever go, this world would look much different. Much worse.
But to be frank, I’m fucking tired of routine surgeries and blistered skin. Anyone would be. So when I was presented with a chance to take part in this clinical trial, there wasn’t much in the way of hesitation. If it goes well, my existing basal cells will shrink or disappear, and the pill will help fight off future growths. But my, those side effects. Let’s examine them again:
- Hair loss (head, eyebrows, body)
- Complete loss of taste
- Severe muscle cramps
- Weight loss (I consider this one a benefit, truth be told. Why not?)
- Loss of appetite
What do you say, really? Even with full knowledge of what’s to come, I have no doubt there will be days when I’m bitter and generally miserable to be around. Nights when painful muscle cramps will have me second guessing the decision to go through with this in the first place. But I’ll press on. For friends, family, and a job that I adore. It’s just that eventually there will come a point where I won’t look quite like myself anymore, so why not overshare in the here and now?