Status Changed
Though my daughter prefers to keep things quiet, part of me wants to shout out about cancer because there are so many of us touched by this rampant disease.
Megan's cancer has come back. However, the doctor's think that perhaps she was mis-diagnosed here in Kingston. Instead of leiomyosarcoma, they think she has GIST (gastro-intestinal stromal tumor) which is also a sarcoma, but a stain identification away from LMS.
What does that mean? It means that the first chemo was the wrong chemo.
It means that the radiation probably was the element that worked to keep her cancer free for nearly three years.
The tumor is in her esophagus. Inoperable. The chemo is by pill this time, better than an IV, but still has nasty side-effects. Megan is now going through radiation, with the hopes that it will destroy the tumor - in time for her husband to pack up and leave to go back to Afghanistan.
I don't know how she does it. I think the children keep her going, her college classes keep her focused. But still questions of "what if" surface.
I went for five days to help her out, thanks to a generous contribution of my co-workers who gave me a card with enough money to make a round trip flight to Kentucky, 1000 miles away. I cooked, I played with the kids. Megan and I got some quality time to talk, eat, shop, and just be together. It was quality and loving time. I am grateful for my friends who helped make this possible.
I am going back in a few more weeks and this time I will be there for what we hope to be her last round of treatments. I want to say FOREVER, but forever is a slippery slope in the land of cancer.
Keep her in your thoughts and prayers. Her babies need her still. I need her still. We come from tough stock...with the blood of Northern and Eastern Europe.
We fight hard.
posted by Patti Gibbons at 7:55 PM
3 Comments:
Hi Patti,
Only a major sarcoma center pathologist can give the correct diagnosis. Don't mess around.
Have her doc send slides to Stanford and MSKCC or Sharon Weiss at Emory (who co-authored the textbook on sarcoma for pathologists)for second opinions. I bet this is LMS. But if it is GIST, then she will have the C-Kit receptor and the drug Gleevic is the magic bullet for those folks. But again, only a major sarcoma pathologist can give you the correct diagnosis.
I'm amazed at how strong you BOTH are!
L,
Sharon in San Francisco
www.LMSdr.org
I am so sorry to hear this awful news. I hope Megan can send her primary tumor (they keep them for at least 7 years)to Sharon Weiss to get a correct diagnosis, this is so important to do. Megan can do this herself. My primary tumor was a rectal wall, so I had my tumor tested in my home town and then I sent it to Dana Farber and it was confirmed to be LMS not GIST. I have 3 young children so I completely understand. Please keep us updated.
They only biospied the first tumor, was not operable, so the wet slide is long gone and we are left with a questionable DX first time around. This biopsy was done thru Vanderbilt in Nashville, a bigger and better place than our little city of Kingston. We take it one day at a time. It is a journey that neither of us ever expected to be on. Best wishes to you dear Anon..may you live a long and healthy life...and whatever happens..may each day be one that has joy in it...those lovely children sure make every day a beautiful one! :) patti
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