It's October. As I jokingly told my husband, this is "National There's Only One Kind of Cancer Month." I've got nothing against making people more aware of breast cancer. It's very important for people to get the proper screenings at the proper times to ensure early diagnosis, assuming that science can ever make up its mind about when the proper times and what the proper tests really are. But as a fighter of some other kind of cancer, I can't help but feel a little neglected by the public and more importantly the research community. Where are the billions of dollars for finding out why some people suddenly develop rampant blood vessel tumors in their livers and lungs? Maybe a few of those billions could be spared on the much rarer group of patients whose rampant blood vessel growths shatter their spines, like mine.
There have been a few tiny steps towards awareness for EHE. Kris Carr made a documentary about her journey with it that eventually led to a fairly successful Crazy Sexy Cancer media machine, including diets and merchandise and books. On the surface it all feels a little commercialized and showy when I visit her websites, but I think behind the glitz she still holds the goal of improving people's lives and health. Her EHE attacked her liver and lungs, though, the more "common" version of this rare disease, and I think her documentary would have turned out very differently if she'd had to spend the first six months of her film footage on the eight foot journey from bedside to hospital room door. Fighting cancer doesn't seem as crazy sexy when you can't control your bowels, a miniature crane lifts you in a sling from one bed to another because you can't stand or scoot over, and you have screaming panic attacks during your MRI's. Then it's not sexy at all, it's just crazy.
I hope that some day I can get more researchers to pay attention to EHE. And in the meantime, I hope that I can get more people to share my realization, and Kris Carr's real message, that life is precious and fragile, that hope is power, and that you don't need an incurable illness to wake you up to the joy of it. You can choose to wake up NOW.
No comments:
Post a Comment
To prevent spam, comments are moderated. Your spam-free comment will appear after I've had a chance to approve it. I won't censor negative feedback, only bogus advertisements and pleas from Nigerian princesses looking for money launderers.