Yesterday was a very good day for us! We were finally accepted into the Phase II trial in Houston. They were able to accept my liver function test from Seattle, and so we're off and running with a new drug to fight against my cancer. At the Bush International airport I took my first dose yesterday as we continued our whirlwind adventure from Seattle to Houston, and then home a day early re-directed from Houston to Chicago and finally home late last night around midnight. Mandy is a rock-star!! I cant imagine having a better caregiver. Not to take anything away from all my other caregivers which are all fantastic and always willing to be there for me, but she is so positive and so giving of herself. I always feel like we can accomplish anything when we are together!
Alright so you probably noticed my strange title for this entry. My geeky 80's side is coming out here, but I started thinking about the next phase of our battle. I know the tiefighters from Star Wars were actually flown by the stormtroopers, but in my battle the good side stole a Ty Fighter from the troopers and is turning against them. This new drug represents the Ty-Fighters battling against the evil empire (bad white blood cells-stormtroopers). Thus the geeky title.......well anyway it made sense in my head! As I write this the Ty-fighters have been attacking the evil empire for 2 days now and I can already feel the number of stormtroopers dwindling.
My energy is good. My appetite has continued improving since my hospital stay in May, and I have gained all my weight back that I lost that month (10 pounds). My brother gave me a new nickname (Belt Loop), because I had to punch a new hole in my belt a couple months ago. I would like to gain another 10 pounds, but hopefully with mostly muscle weight. I have to remind myself constantly to drink fluids, and it is very important to drink a glass of water with the drug. I have to have a two hour window on each side of taking the drug (4 hours without food), which is causing Mandy some nervous stress as she believes in 6 small meals a day. I think we can figure this out though. Im really excited to have this new ammunition by my side, and look forward to heading the right direction.
Thank you everyone that was able to attend the Light the Night walk, and we were proud to represent a very strong Team Firefly this year!! I will continue to let you all know how things are going and thank you for such Strong support!!
Tyler
Thursday, September 30, 2010
Ty-Fighters vs. Stormtroopers
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I feel as if I've been waiting on this day as long as you have, ever since we learned that the DLI didn't work. I can't wait to finally find something that kicks your CML's butt and we're back enjoying Vickie's specials at that bar that only, you, me, our wifes and about a dozen of our friends know about....
ReplyDeleteIt's almost a year since you went with me and learned about Ariad at OHSU. At the time, I never expected that we'd be sharing this journey on so many levels, but as much as I hate to see you go through anything, I am glad to be your wingman or vice versa...
I'm going to have a celebratory glass of wine, put on some 50 cent and Linkin park, and pray this does the trick for you, as it has for a lot of other people...
Love you both,
Hans
PS. You like I worked in 3 references to our special place south of the border...we need to get there soon...
"Life is not about waiting for the storms to pass...it's about learning to dance in the rain."
ReplyDeleteWe know you have been dancing in the rain far too long - at last they are playing your song!
Our love to you both - Pat and Leanne