Hi. My name is Sandy Spetyla and I live in Mooresburg TN. I would like to share my personal story about my GIST. In September of 2007, I had been dieting trying to lose 40 extra pounds that I had desperately been battling since I turned 30. I had successfully lost 20 and was proud of what I was seeing until one weekend my husband and I took a mini-vacation to Gatlinburg. As we were getting ready to go to dinner, I walked past a full length mirror and noticed the upper part of my belly, just under my rib cage, was bigger. I thought to myself, I lost that already, am I gaining some of the weight back? I pointed it out to Robbie and he could visibly see it also. Once we returned home, and the bulge did not leave, I went through a regimen of laxatives, gas-x, water pills, lots of situps, trying to find the cause of the sudden bulge, that actually seemed to be getting bigger. By the next weekend, I was hosting my parents 40’th anniversary party, and because the bulge was very uncomfortable, pushing out my ribs like I was 5 or 6 months pregnant, I decided to put on a happy face, host the party then quietly ask my husband to take me to the emergency room later that night. We got up at 5:00 a.m. and carted off, laughing and giggling because we just knew I probably needed my gall bladder taken out or something of that nature. The ER doctor decided to run a CT on my abdomen. I’ll never forget waiting for the results to come back. Robbie and I were laughing saying things like,”We’ll be rich if they come back and say I’m pregnant”, after I had just had a hysterectomy in January 2007. Well, where one doctor went out, two doctors came back in with a nurse, and they did not smile. I was told I had “nodes” all through my abdomen, like something had exploded inside me. Nodes? What did they mean, nodes? Tumors, and the bulge was fluid build up. My husband went white. One doctor took my hand and asked to pray for me right there! I let her, but I was in such disbelief I really didn’t know what she was praying for. I told my husband to call my parents, and tell them to come quick, that something was very wrong. I was admitted into the hospital. When I was given a room to myself, the nurse on duty told my family and I that they all thought I would want to have a private room so we wouldn’t be disturbed. We all looked at her and I asked her what she meant. She said “honey, you have tumors all through your abdomen, and it doesn’t look good”. My family didn’t know what to say or do, until it hit me that the hospital thought the tumors were cancer, then I screamed.
The next day, my wonderful family doctor explained to me he needed to go in lapriscopically and get a biopsy, and possibly remove some of the tumors. So if I woke up cut from my ribs to navel, that meant they were removable, if I wasn’t, then they weren’t. As I lay in the OR waiting for my anethesia, I cried and I prayed and one of the nurses asked me why was I crying, and I told her that the next time I opened my eyes, I would know if I had cancer or not. She cried to. When I awoke, the first thing I did was feel my stomach, it was not cut from here to there, only 3 small incisions. My doctor came to me, and I just looked at him and said “It’s cancer isn’t it”, and he agreed, but the problem was my tumors were inoperable. At that time, I was diagnosed with ovarian cancer, because I still had my ovaries, until the results were back from the Mayo Clinic. I was immediately in surgery to receive my port for the prospect of chemo. Then we all waited two whole weeks! Two weeks of pure torment, uncomfortable fluid pushing on my ribs, trying to get my “house” in order, because I still had 2 kids at home, and I was only 39! My oncologist called me and said, ” Well Sandra, you’ve hit the jackpot of cancers. You don’t have ovarian cancer, you have GIST.” She explained to me what it was and there was no cure, but a treatment, a pill to take everyday for the rest of my life. No chemo, no hair loss. Everyone was thrilled, including me because I wasn’t going to die of ovarian cancer right then and there. Then it settled in to me, that ok, I have this crazy cancer that has no cure, and I have to take a pill everyday for the rest of my life, or until the pill doesn’t work anymore. A pill that makes me sick and tired and nervous, and keeps me in the bathroom and at a disadvantage to going out for long periods of time. A cancer that is so rare, no one I knew had even heard of it, let alone know how to deal with it. Jackpot? Jackpot for who? My life would never be the same. That “new normal” thing that I’ve been told over and over again, that I need to accept, and to embrace each and every day that I have.
Well, to move ahead to today, my port was never used and removed and I have been taking Gleevec 400 mg, ever since that day I was diagnosed with GIST, and I have good and bad days. Physically, and mentally. I lost another 23 lbs, with great difficulty, because I couldn’t eat. My cancer doesn’ hurt, it never did. If it weren’t for the meds, I wouldn’t know I had cancer. The Gleevec has actually shrunk the explosion in my abdomen and I have been “dancing with NED” ever since, but there is always this dark cloud over my head just waiting for the rain to pour down. Waiting and wondering when will the Gleevec stop working and the tumors return? Will there be a cure in my lifetime, before that happens? I pray so. God has a plan for all of us, I do believe this with all of my heart. And I know he has one for me. This is my GIST story, my cancer.
Age 40 and still going!
Sandy and Robbie Spetyla