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!

3 comments:

  1. Hi Katie,
    I also had ALL Ph+ and a BMT. I have been reading your blog and I agree that you and I are not statistics. Someone has to be the miracle, why not us? I met a guy, 15 year survivor, no relapses ALL Ph+. I have a journal at www.caringbridge.org. My page is my name Jill Krystel. Keep fighting, you are doing great and are a warrior. Your numbers will not be normal for at least a year. Are you taking the Dasatnib for the Philadelphia Positive?

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  2. Yes! I do take Dasatinib (sprycel) Gleevec did not work for me. Where did you meet the 15 year survivor? You seem to have very little side effects after transplant...I can go from just fine to extremely sick in a matter of minutes but I prefer to blog mostly the positives lol if you want more specifics or have any questions you can email me @ ktm5637@yahoo.com. Have you read Lorenzo's blog? He was ALL ph+ and he has been the ONLY person I've known since my diagnosis and I was glad I had his blog to read! I know God put him in my life for a reason. His positivity is infectious! Check out his blog at Lorenzoslifewithleukemia.blogspot.com.

    Blessings,
    Katie!

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  3. I will check it out. I too prefer not to post the really bad bits. It is up and down for me too. I met the 15 year survivor on a hike in Boulder Colorado the week before my transplant. He had the BMT but there were no drugs for Ph+. He is doing really well but still has the good and bad days but mostly from lung damage from GVHD. I am at day +52 and GVHD rash is pretty intense. Watching because my liver seems to be taking a hit and I caught a virus from my donor and infections from the hospital. Doing 3 IV drips on my own. Neutrophils good but T-cells taking a big hit from the cytotoxic antiviral I have to take.

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