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GIST Support International - Here's to a giant group hug! By Janice Gabriel
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Here's To A Giant Group Hug!

by Janice Gabriel

 

Like most of you battling this disease, I travel between various comfort levels which increase or decrease. These depend upon the information that I gather, as well as my understanding of the information garnered.

I did not realize that the survival rate was based on time of metastasis. I do understand that prior to Gleevec, the average survival time was 2 years. I am fortunate, as are many of you, that the Gleevec was introduced just in time. A large tumor was resected in 1998, and by May of 2001 it had spread to my liver...another resection (instead of the clinical trial for Gleevec)...and it returns 5 months later and is then "inoperable". Whew...I now qualify for the Gleevec and it will be 3 years this October that I started taking it, with mixed results of regression, progression and stability.

Thanks to Dr. Demetri I have the reality of this disease, and not just doctors telling me that "at least I don't have a cancer that can kill me", and "oh, you just have a little cancer"..(just what is a little cancer vs. a lot of cancer in the mind of someone who didn't even know they had cancer). And then the rhetoric of "live your life..go have fun..enjoy yourself"...! That may be realistic for the independently wealthy..but for the middle aged average Janices' like me..(middle class, too young to retire, kids in college, and a young child at home) fun is often reserved for a saved-for yearly vacation, that are becoming less of an option due to varying degrees of fatigue and side-effects, add to that the lessened income and increased medical expenses. The truth is, though my dream may be to travel the perimeter of the U.S. in a motor home, visiting every lighthouse on the continent, this is not feasible...economically or otherwise. Instead, however, I am happy to enjoy morning coffee on my deck, read and take a nap when I'm tired. Simple pleasures that include a boardgame with my son or a short walk is the "fun" I live for. I have a birthday next week..a time for celebration!!

Whining is not an option, and fortunately, the times when I succumb are few and far between, as I thank God everyday for the Gleevec and subsequently the additional time. I pray for new discoveries in order to continue my battle. I look forward with anticipation to meeting Dr. Demetri soon, and I am apprehensive about the CT/PET that I will have this Thursday. Like most of you, I live my life 3 months at a time, between scans, blood-work and check-ups. I pray for the words "regression" or at the very best, "stable". I wonder at times if I will be strong, should I hear the words that many of you have already heard, "progression".."resistance"..Oh my God...and my heart goes out to everyone here, as well as their caregivers.

I wish I could hug you all..I wish that we could all join hands in order to pass strength along to each other with each squeeze. I'm scared. Sometimes I have to say it out loud. It's nice to know that you are listening when I do and I thank God for each of you. Thanks for your support...your understanding, your sharing of giant victories. Thanks for sharing the times when you feel defeated, as this gives the rest of us the opportunity to be strong for someone else.

Here's to a giant group hug,

Janice Gabriel

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