Katie

Katie
Still Fighting

Wednesday, July 13, 2011

Day + 120

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They say if you get "a little bit" of Graft vs Host disease before day 100 it's a good sign everything will go pretty well, and past 100 days (chronic gvhd) it will probably be pretty bad. I don't know where I stand, I'm at 120 days and I've had NO graft vs host at all. Now, I feel like hmm "will I get a rash today"? I don't know how many people have "never" had gvhd but I doubt it's many. I still haven't found anyone my age with my exact diagnosis so it's still hard sometimes not having a group I "fit into" so to speak. And I only know one other person with my exact disease (Lorenzi you've been wonderful to me and a wealth of information!) It's funny because when I go to the doctor once a week they say "everything looks great"! and they give me my counts and I just laugh because everything has either an L (low) or H (high) so I'm like okay I'm glad you think that's excellent, yeah I get they want to be positive to keep me positive but come on sometimes you just have to be real. Lately I have talked to several people with ALL but no PH factor like me, almost everyone I've talked to has relapsed and gone through 2 transplants or have severe gvhd, and my cancer is supposed to be far more aggressive. It's hard not wondering if I might relapse, but that's no way to live so I'm constantly telling myself God is still on my side and maybe I'll be the miracle person that just had a perfect donor who never gets gvhd and lives to be 100 who knows haha nice thought uh? My family continues to support me and keep me positive when I have those "bad" days, and when I have a bad day, it's really bad. But slowly but surely as time goes by there are starting to be more good days than bad, Mom always reminds me of this (thanks Mom), and somehow Jenn always knows when my appoints are (even when I have no idea haha; I can't remember yesterday lol) and calls to ck my numbers and see if anythings new. I think she's only missed 2 biopsies (the next one is 3 mths Jenn, so we gotta get our dates together =) And I have the other sister KIM (the compulsive shopper and most "on the go person I know"! She tries to stop by on her way home from work after 12 hours of work bringing babies into this world, we talk often and go out when we can! All of my Aunts, uncles, and cousins are all supportive and wonderful too. This last week I had the babies! We went to Midevil times to create a really fun memory for them, Ryan said "I want to be a knighter when I grow up" and Rachel correcting him every time haha "No Ryan, it's called a knight" every thing was perfect and "normal" for a whole second when I hear her correcting him lol. Rachel is 4 and fluent in English and Spanish, it's quite funny hearing her and Ryan converse because Rachel will talk to him in Spanish and Ryan will respond in English. Ryan says he doesn't know Spanish but when he called his Abuela while here I secretly heard him speak an entire conversation w/ her...in Spanish because she doesn't speak English...busted Ryry=) That's about it as far as life goes right now. My Grandmother just turned 90 this month! I just thought I'd throw that in as well. Love you Grandma!