Faith and GIST
by Hansel M. Wilson
At seventy five years of age most people have left the world of work, for a more leisurely life style, to pursue hobbies, or travel to exotic places or do volunteer things. This has not been my choice, due to several factors, including an inner drive to be useful and to be an asset to this common planet we share. What I have chosen is to do all these things and continue to work part time while doing them. I guess some background is a good place to start so that you can share some insight into what makes me tick. I read most of the essays from fellow GISTers and observed that most of them were written by females with an occasional one by a male. This is part of my reason to write, for I think men by and large are more prone to, "suffer in silence", when there is much they can share, that others may find helpful in facing any disease such as Cancer.
For most of my life I was, "Healthy as a Horse", as the saying goes. I had spent two nights in a hospital for hernia repairs when I retired at age 66 in the year 2000. I was not born in a hospital, which was normal during that era of our history. Soon after retiring my wife and I took a six weeks trip across the U. S. in our mini-van, visiting most of our National Parks, as we went. We ended our road trip in Seattle, where our daughter Susanna and her family lives. From there we took a cruise ship to Alaska via the Inside Passage, and then back to Seattle coming back a Northern route after taking a Southern route on the way out. We spent a couple of days with a brother who lived in Kalamazoo, Mich., and then down through Ohio, Kentucky and North Carolina, back to our home in Loganville, Georgia. After a few days getting things back in shape around the homestead, we decided to go to our place in the mountains near Waynesville, N. C. to make sure the cabin was winterized, and it was there that I noticed I was really short of breath when weeding and cutting the grass, etc. I also noticed that I was having some pains in my chest, so I told my wife we should return home, so I could get some rest. The next morning my wife asked if I wanted to go to Church and I told her that maybe she should take me to the emergency room at the hospital, for I was continuing to have chest pains. Monday the hospital transported me to St. Joseph's Hospital in Atlanta where I had open heart procedure for a triple by-pass, on Tuesday. Saturday I was back home, on the road to full recovery.
I followed the doctor's order, by doing all the exercises including deep breathing, and walking for several minutes every day. I increased my exercise and walking routines each day, and before long I was walking a four-wheeler trail through the woods to some abandoned rock quarries about a mile and half away. If I walked around the quarries that added up to four or five miles, but my wife became very concerned that I would get ticks, chiggers, poison ivy or if I had any kind of problem she may not be able to find me or help me. She insisted that I look for a job where others would be around and maybe I could find one that incorporated walking. I eventually ended up bagging groceries at a Publix Supermarket, where I escort the customers to the parking lot and load the groceries into the customers car. This gave me a little money but even more important I was able to socialize with other people. I was able to pick up four twelve packs of soft drinks at one time and load them at all at one time.
Just as things seemed to be going well, I noticed I was having a hard time having a bowel movement. There seemed to be something blocking my colon, so it was time to get medical help, to see what was going on. After a battery of tests, including X-Rays, Colonostomy, Urinary exam, and a biopsy, the verdict was that I had a large tumor attached to the lower colon that was determined to benign, but I decided to have it surgery to remove it because it was giving me so much trouble. This turned out to be one of the best decisions I have ever made for as it turned out I had what the surgeon said was a tumor the size of a goose egg. When the report came back from two labs, the diagnosis was GIST, and the surgeon referred me to an Oncology group for follow-up care. This group assigned me to Dr. Szabo who was very frank in telling me that I was the first patient this group had ever had with this Cancer, but he had read up on it and said that because the surgeon had reported getting all the tumor, they would simply monitor me for the time being. A CT Scan and a few weeks later a PET Scan showed no sign of any tumors, but I was not off the hook for this Cancer was notorious for re-growing. Now I discovered that the tumor had pushed through the nets holding my hernia repairs, and I went in for a rather long and involved procedure to repair them. All the old netting material had to be removed before the new repairs could be made, so now several months later I am recovering from another surgery.
Several months later I had a CT Scan as part of my regular program of follow-up with the Cancer group and found that the GIST was again growing. I was put on 400 mg Gleevec and wouldn't you know I am allergic to Gleevec. I had rashes, and my mouth became so involved I could not eat. I was taken off Gleevec and used prescription mouth wash to get my mouth cleared up. Just at this time the State of Georgia Retirement System decided to drop the Insurance group that I had been with for over 12 years, and I had to choose another Insurer. I talked to several others who had Kaiser Permanente' and many recommended them. Their Oncology group was almost two hour drive away and they pretended to know all about GIST, but later found out they did not have first hand experience. They said that because I was allergic to Gleevec they would keep a watch and if it got out of control I may have to have it removed via surgery. Because it is so close to the anus there is no way to do a resection so that would be a life changing event. All my body excretions would be via tubes etc., but this is all they knew to do. So after a year of watching it grow I changed Insurance carriers again and went back to my original group. Dr. Szabo recommended that I needed to get back on Gleevec, and that maybe I could take anti-histamine along with it. I started taking 100 mg for a few days increasing 100 mg until I was back to 400 mg in a few days. It worked. He immediately began to suggest that I try to get into the GIST program at M. D. Anderson Cancer Center in Houston. After several e-mails they accepted me and now I am seeing Dr. Jonathan Trent there. When the tumor showed some slight growth, I was increased to 800 mg, by gradually increasing the dose. I am now stable for several months, but no shrink yet.
Enough back-ground, now to the faith part. Every story is unique with many twists and turns, but there are many common threads that we all can identify with. The fear, anger, and unbelief when we first hear the words, "You have Cancer", we all know too well. What does this mean? How will I cope with this disease? How long will I live? These are some of the questions we all have asked, but I believe it is how we deal with it is what will define us. After we rail against our condition, and yelled, Why, God, Why me? What now? There slowly comes the realization that, hey, I am still here, I am alive, God must have a plan for me. Each person must discern what God's plan is for them. I will share how I am unraveling his plan for me. I have faith that each day is a unique opportunity to grow and be a useful member of the human family. I continue to make plans, for the future, and believe that I must choose to enjoy each day I am given. Travel has always been something my wife and I enjoy and when we had the chance to go to Israel with a group of 24 from our church in January of this year, it was a highlight of my life. We have taken several cruises and have bought a vacation house in Fernandina Beach, Fla., where we like to go. Our four children and five grand children use it on a regular basis. Buying this house was a step of faith, that there would be a future.
I continue to work part time at the grocery store, where I share trivia with the customers, especially historical trivia. They love it and look for me when they come in. Most say they learn something new every time. Many tell me they are praying for me and that is a plus, but I want to know if I am praying and they are praying, why does God not heal me? Is my faith not strong enough? Here I am during Holy Week of 2009 with my GIST still there, yet I know the passage in Isaiah 53 vs. 5, which ends, "And by his stripes we are healed". I have claimed this verse, and I know that in his own good time God will heal me. While I am waiting I know I must be busy with the job he has given me that remains unfinished. I continue to serve on the Missions Committee at my church and do food drives for our local community food bank. I have endowed a scholarship at Reinhardt College in Waleska, Ga., where my father and mother met as students, and my son Brooks met his wife. I have given $5,000 each year and Publix Supermarket matches that dollar for dollar each year. I believe that faith should be manifest in planning for living rather than death, with the sure knowledge that death is certain and that our attitude toward life is the thing that will ultimately define us. I may fail many times but if I have one success people will remember that success, not the failures. I have faith that God is true to his word, and that his death was followed by resurrection which I too can claim. My faith grows as I exercise it each day. May each of you who read this also grow in your own way.
Hansel M. Wilson, Loganville, Georgia