This is totally out of order, but I finally got around to writing
The Prologue (the italics are meant to convey pretentiousness). I had originally published this back in July, but took it down because it is so deeply personal to me. Anyway, I thought about it and finally got over it.
“I won the crap lotto” is one of my standard answers whenever anyone asks about my condition. In Medicalese it is called primitive neuroectodermal tumor, but it’s much easier to call it Ewing’s sarcoma. Eighty years ago Dr. Ewing discovered a rare form of bone cancer (it’s actually more complicated than that, but I’m only capable of writing the Cancer for Dummies version). Only three in a million people get it, which makes it on par with the odds of a scratch-off ticket. My grandfather bought me a bunch of scratch-off tickets for Christmas, because as a family we believe that gambling = family cohesion. We played poker for Christmas and have reunions at casinos. Anyway, I didn’t win any of the stupid scratch-off tickets. But I did “win” this. As I have learned in Poker, you play the hand that you are dealt (crap, I never win that either!).
Me contemplating whether to call or hold at the Texas Hold’em family Christmas tournament; I evidently chose the wrong one, because I lost.
Because it is a pediatric cancer, I am the geriatric patient at a children’s hospital. The treatment requires that I spend somewhere around 200 days there. I went into this thinking that I could be a good role model for the kids. Hah! That is the exact opposite of what happened. There are little warriors up there who have endured years of chemotherapy and a bone marrow transplant, and yet they are smiling. I am a total coward compared to some of them. One of the nurses is ex-military and gave his purple heart to one of the kids up there; that nurse and kid are both amazing people. Meeting some of the kids and staff on that floor has been such an honor. When I think of role models - I think of them.
Fun with lasers!
I have no idea why, but I wanted to record all of this for the family photo album. It’s kind of sick, but I cherish these photographs. I am the unwilling host of an alien parasite which lives in my right lower mandible. Think the movie Alien, but it is called Ewing's sarcoma. This is the unedited story.
This resident said that I was "an impressive case." Go me! Oh, that's Medicalese for "I'm glad I'm not you"? Crap!
