/Member Story – Paula Vettel

Member Story – Paula Vettel

By |2018-10-01T15:02:31+00:00December 13th, 2009|Member Stories|

Here is a Member Story written by Paula Vettel about her experiences with GIST. When you start the morning by throwing up blood, you know it’s not going to be a good day. Thus began my history with GIST in October 1989. A quick trip to the emergency room led me to a gastroenterologist’s office. An endoscopy revealed a “muscle tumor” at the top of my stomach, which was removed surgically. When pathology reported the tumor as benign, my GI doctor seemed more surprised than happy. I suppose that should have set off a few warning bells. But hey, when the lab says it isn’t cancer, you give thanks to God and don’t ask too many questions (Keep in mind that this took place before CT scans were available).

I went home happy. Every year for five years we repeated the endoscopy, but nothing ever showed up. After five years I was pronounced cured, and didn’t give the episode another thought.

Fast-forward to the summer of 2001 when I started having strange symptoms. I was out of breath constantly; brushing my teeth would leave me gasping. I went right to the doctor, but not for a second did I connect these symptoms to my ordeal of 12 years ago. The blood work came back okay, so we focused on allergy and breathing problems. Eventually the internist repeated the blood work, which showed elevated counts of white blood cells and liver enzymes. He ordered a CT scan.

At this point I was more confused than worried. I figured they’d find the problem, fix it, and that would be that. Late that night I woke up with sharp pains. By morning, the pain had gotten so strong that I couldn’t stand up, let alone walk. I don’t remember how my husband got me off the bathroom floor, into the car, and into the emergency room.

Once in the ER, they performed the CT scan that I was scheduled to receive anyway. We were still in the emergency room when a nurse came in and started talking matter-of-factly about “the growth”. I asked her what she was talking about. She looked uncomfortable. “Hasn’t a doctor been in here yet?” she asked. When we told her no, she took a deep breath and told us what a doctor should have: There were two small masses and a large mass – 15 x 9 cm – sited on my liver.

My first reaction was, well, now I know why I’ve been out of breath. The largest tumor was pressing into my right lung, which was partially collapsed. But now the tumors were in full revolt. My entire abdomen swelled up. I had quarts of liquid removed from my abdomen and chest cavity, but the extreme swelling remained. My shoes didn’t fit. Hell, my hospital gown barely fit. I couldn’t even roll onto my side in bed.

The surgeon who performed the original stomach surgery – the guy everyone in the hospital assured me was the best around – told me that the tumor was cancerous and that surgery was not an option. It wasn’t so much what he said as how he said it. It was clear from his facial expression, the slow and deliberate way he was speaking, that he was delivering very bad news.

And yet, I didn’t panic. No one told me I was going to die. (One doctor did tell my husband that I was going to die. But he didn’t pass that bit of happy news along.) I was in an amazing state of denial. Yes, of course, I knew that having cancer was bad. Yet I assumed that I would get out of this fix somehow.

I didn’t see the oncologist for several days. After his examination, he told me that there was a medicine that could help me, maybe even cure me, but I needed a test to see if I qualified. I lay in bed wondering if this was the miracle I was waiting for. I prayed and pleaded with God to give me my old life back. After three long days, the oncologist came back with the news that I was loaded with the desired receptors (c-kit). My husband and I wept with joy.

I received my first 400 mg dose of Gleevec that evening. When I woke up the next morning, I felt vaguely better. Soon I was able to roll in bed. That afternoon I got out of bed for the first time in eight days. The second dose of Gleevec was taken on an empty stomach. That was the first and last time I tried ingesting Gleevec without a full meal (What a waste of expensive medicine).

The swelling continued to subside. I was released from the hospital the next evening. Gradually my strength increased, and I returned to work and activities with my family. As life returned to normal, I refused to think about the possibility that I would not be cured. I was afraid to do any research on Gleevec because I didn’t want to read any bad news.

Two months later, the swelling was gone from the liver, but the tumors remained substantial. Five months later, the largest tumor had shrunk to 11 x 8 cm. By this time I had recovered completely from the swelling and symptoms. The smaller tumors shrank from 4 x 3 cm to 3 x 2.3 cm and 5.7 x 3.5 cm to 4.6 x 2.9 cm. I was tolerating Gleevec so well, the oncologist increased my dose to 600 mg.

vettelsThe next CT scan showed no more shrinkage. When I heard this I panicked, convinced that tumor regrowth would inevitably follow. My oncologist tried to assure me that everything was okay, but I didn’t believe him. I was angry that I would be cheated out of seeing my boys grow up and get married. Phil and I would not have the long happy life to which we looked forward.

Finally, I began searching the internet for more information, and found the Life Raft Group. I soon learned that my experience was typical for GIST and Gleevec. I finally began to relax and accept the fact that I was going to live with cancer for the rest of my life. Fortunately, this has been relatively easy. My side effects from the 600 mg Gleevec are very manageable. I have no nausea as long as I eat enough food to keep my stomach from being empty. I have no diarrhea, or fatigue. At first I took diuretic pills to control the edema in the eyes and feet along with extra potassium, magnesium, and calcium to counteract the diuretic. My hemoglobin is always good. And I never skip a dose of Gleevec.

I was able to go back to my job as a lubricant research chemist. I continue to work full time now as a consultant. I travel, garden, exercise, and enjoy dining out with my husband Phil. His job as Restaurant Critic for the Chicago Tribunegives us many opportunities to try delicious and interesting food and wine. Our sons are grown now, and we have enjoyed watching their high school and college activities.

I have been to many Life Raft meetings, both locally in the Chicago area and at the biannual Life Fest, and I am a member of the LRG Science Team. I recently succeeded Dick Kinzig as coordinator of the Chicago chapter. I continue to monitor the tumors by CT scan every six months. I know that this will never change, but with the support of my family and friends, I will be hanging onto our “life raft” till the end. I’ve learned to live for today. But I still plan for the future.

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