Today is my 12 year Brainniversary and its been an emotional week. After watching all of the memorials for an amazing man, father, hero, fighter, survivor/thriver, Brain Cancer patient U.S. Senator John McCain, I’m finally ready to talk again to my anonymous group of my Blogapy friends and family on the other side of my computer screen.
John McCain and I shared a Doctor! One of the best in the world. Dr Henry Friedman from Duke. You might have heard of him… he invented the polio vaccine trial for brain cancer. So, first off let me say to John and his family… you really did consult with the best!
I know that John only got 18 months… and today is my 12 year Brainniversary. Tomorrow, which is in just a few short minutes, as I’m writing this at 11:57 on Monday night, is my MRI at Yale. And I’m scared. I feel like I’m not fighting the tumor anymore… I’m just fighting for more time.
Time to do more.
I always say, “I’d much rather live a very FULL half life, Than a VERY half full life.” Well, John McCain lived a FULL full life!
in 30 seconds it will be tomorrow.
September 4, 2018. In a few hours I will shower and get ready for what may truly be my 72nd MRI. And I’m up in the middle of the night, shaking and nauseous as hell. Listening to Led Zeppelin play Stairway to Heaven…. Which randomly just came on Pandora as I’m typing this! I can’t make this stuff up!
12:04. Today is now my day of i.v. tube in the arm, needle poking, hospital gown wearing trip into that long tunnel of hell which will let me know how much larger my brain tumor has become. Wish me luck.
Regardless of what it says I will still keep fighting on… just like John McCain did.
Project 1. Work on getting sponsors and participants for the upcoming Connecticut Brain Tumor Alliance 5K Path of Hope which will take place on Jennings Beach in Fairfield, CT on September 29th! It will be a great celebration for patients, families, kids…. where we celebrate in the fight against brain tumors! Brain Cancer gets almost no funding when it comes to federally allocated research dollars. So organizations like ours fill in the gap for research dollars and patient needs. Like housing money, transportation to treatments, funeral costs, better equipment for hospitals, patient meals, patient led support groups… and soooo much more!
Project 2. Work alongside Duke’s Dr. Henry Friedman in the fight to get the over inflated drug price of Brain Cancer drug, Lomustine, lowered. I figure Henry has been on CBS’s 60 minutes and I’ve been on CBS Evening News with Jeff Glor, maybe between the 2 of us,we’ll be able use our reputations and connections, and make another worthy fight against a greedy drug company taking advantage of people who are dying of Brain Cancer.
Wouldn’t John McCain love that!