Wednesday, March 10, 2010

How to Measure "Progress"

Very carefully because to be honest, there's not a whole lot of tangible progress to be measured...

I notice small things like being able to push the button on my camera and using my right hand to zip up my jeans (my right hand is much worse). Maybe these are signs the strength is returning in my hands, this was the last thing to go... My neurologist said that my functions will return in an orderly fashion (if they return) i.e. the functions that were last to to go are the first to return. I'm working really hard to try and type rather than hunting and pecking as I think it's good PT but it's really frustrating, ugh!

In fact, I have to say that everything I do is majorly frustrating so I find myself laying in bed quite a bit, mwah mwah mwah... As if refractory cancer isn't hard enough to deal with and you throw in this Guillain Barre Syndrome -- sometimes I wonder how much more I can take. I've discovered HULU though and seek out funny stuff on my computer to try and keep my spirits up;) I just finished the last episode of Saturday night live and that Zack dude with the beard from The Hangover was the host and he's crazy. Vampire Weekend was the musical guest and they're pretty talented young musicians. After all these years, SNL still has it!

So I'm back in Florida and it's finally hot here, yesssss! I'd like to get to Lakeland to check out the Tigers in spring training as I'm excited for baseball this year :D I have a week before I leave for New York and thought it'd be fun to check em out before I go.

I've also booked the trip to Houston (MD Anderson) April 2nd. I've recruited my best and closest advocate (my dear Jackie) to join me... After my appt. in Houston we'll be in a rental car heading for Austin for a couple of days as she's never been there. Austin Rocks!!

Ok, I'm done trying to type... I wanted to finish by sending out prayers to Jeremy from the Hodge Forum who is fighting for his life right now at NYU hospital. His wife Maggie has been so gracious and brave to keep our Hodgkins community up to date regarding his condition. Jeremy, according to his doctors, has the most agressive disease they have ever seen and they just can't seem to slow it down. He's suffering pretty bad and has asked to be admitted so his kids don't have to see him die at home, so sad... My heart goes out to those guys.

Hope they find peace...

3 comments:

Anastasia said...

Oh You are back in Florida? That is sad about Jeremy..I have been keeping with those updates for the most part too. I hope that medicine continues to show REAL PROGRESS. That is what I hope! I think of you all the time!

Anastasia said...

Wait a minute...what is HULU? And "GBS"... is that what you have now? I looked the second one up. Is that from the Hodgkin's or from the SGN 35? Feel free not to answer...I understand it it is personal info to you...just wondering..?

Angie Nader said...

my prayers go out to jeremy and his family! this is so sad!
i hate hodgkins! i dont know why they say it is the good cancer!