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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,
