9 years ago when the 7 of us started the Connecticut Brain Tumor Alliance… I said publicly that I wanted to change the face of Brain Cancer.
I had no idea what I was doing!
I have loved talking, crying, hugging, laughing… and then mourning so many patients. So many that died from the same disease that I will die from one day.
The patients that I started working with in the beginning… became so much more than patients to me. They were like family. They were family because we shared something so rare, so painful… something no one else could possibly understand… we spoke an unspoken language… we understood long embraces… and 3 a.m. phone calls… conversations that neither one of us could share with anyone else in the world.
And the losses became so overwhelming.
I’m not sure how Doctors do it… Maybe because they don’t have Brain Cancer… or maybe they don’t become our friends. They try to see us only as patients. Maybe for their own protection.
But when you come out publicly as the “New” face and voice of Brain Cancer… then that’s what you become.
The phone calls were endless… emails… texts… Facebook messages…. knocks on the door. People who knew someone… who knew someone… who knew me….
Then there were people who didn’t know me… writing me… asking questions. Some of them very creepy… and a few… very scary.
But as a “Varsity” Brain Cancer survivor… I feel like I have some really great advice to offer so many newly diagnosed patients.
So… how to do it? Well… I came up with the Brain Tumor Bitch. I know… sort of a hard title to read. Maybe you cringed a little?
But when I say it… I say it so boldly, proudly…. sticking my chest out… and owning my Brain Tumor. It doesn’t own me anymore. Something I couldn’t ever fathom 9 years ago… when it did own me.
So… If you have any friends or family… or friends of friends of friends who have been recently diagnosed… please pass this website on to them. My videos are short… 3 min… and talk about some very real subjects: Resting, Seizures, Medication, Medical Marijuana, Not Driving, Sex… I try to be very real, very honest …and hopefully helpful.
That’s why I’m The Bitch!