Mid-year 2003, I thought I had an ulcer. Anti-ulcer medications seemed to help until year’s end. A visit to the primary physician and a referral to a gastroenterologist set me up for an endoscopy. Although this wise diagnostician admitted that he’d never seen a GIST, or gastrointestinal stromal tumor, he said it was a real possibility. His biopsy, however, was “inconclusive.”
Eventually, I went for an ultrasound endoscopy and biopsy. This time the diagnosis was confirmed with a positive c-kit test Feb. 13, 2004. The softball-sized tumor was in the top part of my stomach, near the esophagus.
I saw a gastric surgeon, who basically said the tumor was large to try to remove, and suggested that we shrink it with an oral chemotherapy pill. I met with an oncologist March 1, who talked to me about Gleevec. I agreed to try it with the hope of surgical removal in the future.
Over time, my personal treatment plan evolved to include the best the Seattle, Wash., area can offer. It included walking and swimming for exercise and fun, lots of good nourishment, high-calorie foods to keep my weight up, family and social support, meaningful work, guided imagery, humor and prayer. I wanted to cover as many bases as possible.
In March, I was at my weakest. I only read paperback books because hard-backed ones were too heavy to hold! Gradually, I began to feel better and stronger as I continued with Gleevec. I had monthly check-ups and CT scans every three months. Some shrinkage occurred but not much.
Finally, after eight months, the oncologist decided that the results from Gleevec had stabilized, with little additional shrinkage expected. Time to re-visit the surgeon. He said it would be a “de-bulking” procedure. He told me that a total gastectomy and probable splenectomy would be necessary to remove the tumor. I’d probably need a feeding tube until I could maintain my own weight with a pouch-like stomach shaped from part of my intestines. Quite invasive, but I agreed to it. There didn’t seem to be any alternative.
My surgery was set for Nov. 30, 2004. I had family, church, and social support on board since the diagnosis. Now I really needed their support and prayers. I arranged time off from work. I readied myself for the surgery. I listened to a guided imagery CD for cancer patients. It helped me feel calm, accepting and positive about the surgery. I managed to gain a few extra pounds before surgery. In June, I’d started swimming a half-mile every week and thought that would speed my recovery.
I spent the night before surgery at my son’s house. He and his wife live near the hospital. That lessened the worry about traffic or arriving late. When the time approached, I felt an urgency to get to the hospital. I wanted to get on with it. We arrived in plenty of time. My daughter also arrived before they swooshed me away to a pre-operative area. I traded my clothes for the bareback hospital gown we all know. Then my children joined me. We had a Reader’s Digestand were reading the jokes and guessing the word meanings. Soon, it was time to say goodbye to my family and tell them I love them. I also said that I knew the surgery would go well. Before they rolled me into the operating room, the surgeon came to see me. I told him that many people were praying for his wisdom during the procedure, and for a positive outcome. I added that I knew the surgery would turn out all right. Then it was time.
I remember the operating staff busy with their preparations. I heard them counting sponges and such things. They told me I’d be going to sleep. That’s all I remember until I awoke about five hours later.
I still had my stomach and spleen. The tumor was gone. I didn’t need a blood transfusion. I didn’t need a feeding tube. Later, the surgeon explained that the orange-sized tumor peeled away from the walls of the spleen and the stomach, except for a small area of the stomach, which he removed. However, he said he thought he saw spots of tumor cells remaining in my stomach. He’d explained his reasoning before surgery: Chemotherapy has a better chance against 100 cells after surgery than 1,000 cells before surgery. Therefore, he decided to leave my stomach intact, to enhance my quality of life. I think he showed both wisdom and grace.
As soon as I could tolerate food, I resumed Gleevec. The hospitalization is partly a blur, partly vivid observations. I treasure the moments when someone met a need, eased a pain, gave me a warm blanket. I especially appreciated the nurses who silenced the obnoxious beeping of the IV machine! One nurse told me where there were nice places to walk around the hospital, which my son and I enjoyed. Another nurse gave me the greatest cap with shampoo in it to wash my hair while in bed! I used the hospital’s newsletter and asked my “surgical team” to find space on it to sign their names for me. I have close to 40 signatures on it and know that I missed some of them. I thank all of them for being on my healing team. My pastor visited me in the hospital. When I told him I still had my stomach, he quietly said that there were 100 people on the prayer chain. I still feel humble to experience the power of prayer at work in my life.
After discharge, I went to my daughter’s house. My son took time off work to be with me. My sister flew across the country to help me make the transition back to my apartment. She’s a good cook, and put three meals a day in front of me that were much nicer than I’d have prepared for myself. Friends and co-workers sent flowers, food and cards. I’d set up a telephone and e-mail tree to let folks know how the surgery went. Somehow, and unfortunately, I forgot to have someone call my boss! My precious granddaughters saw me with “bed hair” and asked how my hair stood up on end. They brought me “get well” pictures made with their own loving hands. They gave me hugs and kisses. They saw me progress from having lots of tubes to helping them decorate the Christmas tree. I hope to be around to watch them grow from the 9- and 6-year-old darlings they are now to being “all grown-up” and self-sufficient adults.
Fast-forward to last month. My latest scan showed no evidence of the disease! NO ONE led me to believe they could remove all of the cancer. A nodule assumed to be metastasis was, in fact, benign. Now I’m told they DID get all of the tumor. I’m to continue on Gleevec for about another year. As the oncologist said, our Life Raft is in “uncharted territory.” In the meantime, with the first anniversary of my diagnosis, I’ve asked all of my family and supporters to go to a nearby pool for a celebration swim. This is not just for me but for all the folks who have the dubious distinction of dealing with a malignancy yet continue to trudge on! My incision spans the front of my midriff. I’d told the surgeon that I swim, and when they were removing the staples, I asked him when I should get the two-piece swimsuit to show off his handiwork. He didn’t miss a beat, and said that I should be ready by summer.
Keeping a sense of humor has helped me through some rough spots. I’m back at my one-day-a-week nursing job at an assisted living facility. I’m also swimming a half-mile per week again. I still welcome suggestions for high-calorie food/snacks to help me maintain my weight. The latest suggestion was Hawaiian poi, and a trip to Hawaii to get it! The next chapter of my life is not written yet. Whatever the outcome, I have been blessed.
As I resume the activities that I had before surgery, I feel differently about each of them. This gift of life is ever-present with me. If this were my last day, would I do things differently? My goal is to be able to answer, mostly, “No.” I also continue to shorten my list of “I-wish-I-had” items. Every time I eat a normal-sized meal, I’m thankful for the quality of life I enjoy. I ran into an acquaintance the other day who said, after hearing my story, “You must have a new lease on life.” Well said. I must.