Linda's GIST Cancer Journey

My cancer story started in September 2008. I went to the doctor for “flu” and was admitted for emergency surgery. The initial diagnosis was very grim....ovarian cancer. When the surgery was complete, they had removed 2 massive tumors (26 cm and 30 cm), removed part of my small intestines, performed a complete hysterectomy and appendectomy. They also found several small tumors in my liver (metastatic disease) and tried to remove and treat those as well. About a week after the surgery, we received the pathology report. It was not ovarian cancer, but instead a rare cancer called GIST (gastrointestinal stromal tumor). As odd as it sounds, this was in fact good news because although GIST is rare, in recent years there have been huge breakthroughs in treating this cancer. I was told, you won’t need a port for chemo, you’ll take an oral medicine called Gleevec each day and we’ll monitor you every few months with CT scans.

So for six years this has been the drill, LIVING with cancer. I take the drug religiously every night (I’ve probably missed about 12 doses over the 6 years) and pray for it to keep working on the few small tumors I still have. The side effects have been mostly manageable….however my being able to work from home has been a godsend when those side effects are most difficult. If you look at me, you would not guess I have cancer, but I do....and most days are pretty good, but I still have to take that reminder pill each night....and sometimes those side effects can be pretty bad too.

I am also very blessed that I have a wonderful and supporting family starting with my husband John, my parents Ron and Evie, and brother Mike. My large extended family, friends, and acquaintances are all supportive and kindhearted. Fortunately John has a good job and I’m able to be on his insurance. The cost of treatment each year has been around $2[phone redacted] which has been manageable….although I am sure I could think of way more fun ways to spend that money, but instead we spend it on scans and Gleevec.

So, why the fund now? On September 4th, 2014 I will be having a second surgery. This surgery is to remove one rogue tumor that is not responding completely to Gleevec and is growing slowly. We want to remove it before it causes serious problems, like rupturing and spreading cells that are not controlled by Gleevec or growing into my colon. My surgeon is also going to explore around and remove any small nodules that might not be visible via CT and he’s also going to treat the 2 small lesions in my liver. Our hope and prayers are for this to set the clock back for me so I’m once again No Evidence of Disease (also called NED). While we have insurance, we will need to cover the expenses up to that max out of pocket, plus there will be a few weeks where I won’t be able to work. That’s one of the drawbacks to being self-employed, there is no short-term disability.

It is extremely difficult for me to request any kind of help and financial help even harder, but it's more bearable than the thought of struggling to pay those bills when they arrive or to try to force myself back to work before I’m fully recovered. I will be eternally grateful for your contributions no matter how small. I’m praying daily for a miracle in the treatment or cure of this disease. After surgery, the road to recovery will include resuming Gleevec and scans but with the hope that the scan results will no longer have a list of small tumors or growing tumors.

You can read more about GIST at http://www.gistsupport.org.

Prayers and well wishes are appreciated!
Linda
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Organizer

Linda Kimble Long 
Organizer
Schaumburg, IL
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