Wednesday, September 17, 2008

It is GREAT to be a survivor!

TSNW friday hiking group; I am pictured in pink on the right
TSNW = Team Survivor NW
It is a fitness and wellness support group for women cancer survivors and patients. Check out the link for TSNW in the left margin of this page under the heading "Places Where I Train to be a Survivor".
P.S. - For those of you visiting my page for the first time or are new to the NF2 Odyssey, I am also a cancer survivor. 15 years ago (Fall 1992) I was diagnosed with lymphoma cancer known as Hodgkin's Disease. This was 7 years prior to the time we discovered I had NF2. In fact, the reason I was diagnosed with NF2 so quickly after a poor hearing test in 1999, was that an ENT had reason to order an MRI of the brain. He had an idea that may bizarre hearing loss at such a young age could be the result of a brain tumor. He was correct! And it was just not A brain tumor but SEVERAL - reported as too many to count.
After finding out my head looks like a lit up Christmas tree from all the tumors, we had to determine if the cancer returned or if a different kind had started. Therefore , I had to go through all the fun of cancer testing all over again. (NOT! LOL). While it was a relief that I did not have brain cancer (back in 1992 the average survival was about 5 years for brain cancer), it still was little comfort that I had all these tumors up there for life which were incurable, would continue to grow, and chip away at my quality of life FOR THE REMAINDER OF MY LIFE.
Over the years I have been told that the cancer and NF2 are completely unrelated. I guess I just was not very lucky! However, it is very likely that my genes lack an essential tumor suppressor gene which made me susceptible to both. There are a few of us with NF2 and NF1 who have had or have cancer too.
I have learned to live with the losses and have worked very hard to get back what I can. This is my best year of the previous 4. So to me, being a survivor is even more meaningful as each day is a practice in survival to make the best of my situation.

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