Always the Odd One

So I was the lucky one in 40,000 who got the genetic mutation for a rare Central nervous system disorder. And then when I went to a genetic counselor and had my mutation pulled it was the first of its kind to ever be on record at Mass General and at the national Institute of health. 

So yesterday Dr. Glass asked me how I made out with round one. When I told him all my chief minor complaints and things that I noticed, he said every single one of them was a first and he never heard anyone complain about that before. He's a Neuroncologist, he's used to treating people with cancer. Maybe people with neurofibromatosis type two respond different, because I'm in a group on Facebook of people with my disorder who are receiving this chemo and I know they all felt when I felt. 

Dr. Glass informs me, that where the tumors may shrink I will not regain my hearing. He said that he's never heard of anyone getting hearing back. 

Again according to my group there have been many who have regained their hearing. So for you Dr Glass,  I'm singing Blondie "The tide is high but I'm holding on, I'm gonna be your number one.... I'm not the kind of girl who gives up just like that- oh nooooo"

Chemo selfie