Member Story - Tempest Sanborn

Hello, my name is Tempest Sanborn and I am now 45 years old. My journey with GIST started on June 16, 2005 during a trip to Florida to visit my sister (who recently passed away from breast cancer) and my mother (who has battled several types of cancer and has survived them all).

On June 15th I surprised my mother at dinner which was held at my brother’s home. After dinner I felt ill to my stomach and when I got to my mother’s home I had black stools and nausea to my stomach. I did not realize anything was wrong and just thought it was the food which I was not used to eating. The next day on the 16th I woke up still not feeling well, my mother thought it was from the flight and that I just needed some good ole southern food to get me back to myself. While I waited for breakfast I felt the need to use the restroom and while in the restroom I had loose black stools again and nausea again except this time I blacked out and fell off the toilet stool. After waking up, I called out for help and my mother came. My mother tried to feed me but once again I passed out and my mother had to call for my brother who is an EMT to check me out. They could not get a good pressure on me and even tried to check my blood sugar. I decided it was time to see my mother’s physician and see what could be the problem. I was the one who was never sick and very physically healthy. I did not smoke or drink alcohol and watched what I ate.

When I saw the doctor he immediately diagnosed me with internal bleeding and had me admitted to the hospital, where I was found to be bleeding and given a transfusion. By the end of my week stay in ICU, I was given 4 pints of blood and checked from head to toe and given potassium. The doctors did not find anything except ulcers which they said were bleeding, but the radiogologist saw a small mass on my CT scan and MRI. It was brought to the attention of the GI specialist where they said that when they did the scope, they did not see any mass, so they suggested that when I get back home to Washington State that I get another CT scan done in 3-6 months and have it checked out.

Once I got home I was still very tired and did not look myself. I saw a physician when I got home and told him about my recent illness and he decided that he would order another scan in 3 months and have some blood work and small intestine series done. I got back to my life and did not worry about anything except getting ready for the new school year (I am a special education paraprofessional for high school students).

I had another scan done in August and this time the mass that was seen in Florida was detected and this time it was twice the size of the first scan. They had me make an appointment immediately with the GI specialist for a scope, which was scheduled on the 17th of October 2005. I went for the scope and during the scope the doctor realized that the mass had gone into the stomach and I was bleeding internally. He immediately called the ambulance and I was rushed to the hospital where my surgeon had to do surgery the next day on me. I had a mass the size of a soft ball and it was determined to be a GIST tumor and cancerous. The surgeon was able to remove the mass but I had complications from surgery and had to be transferred to Seattle, where I had to get drain tubes put into my upper and left area of the stomach due to infected fluids. I also had to have a shunt placed in my pancreas due to lack of drainage. I was in the hospital with NPO from October 17th until November 22nd of 2005. After I was discharged from Seattle Hospital, I was on a feeding tube and two gravity drain tubes which consequently prevented me from lying in bed.

This went on until May 2006 where I was told that the hole in my stomach had healed. All of the tubes were removed from my body. I went through depression and anxiety (and dependency of pain killers) which were not diagnosed during my illness. I started eating once again and stayed with a diet that the doctor felt would help me gain strength after being ill for so long. I met with the oncologist and she started me on Gleevec 200 mg twice a day. I had several side effects and had to have medication to treat the side effects of the Gleevec.

I started to have a fever at night and felt very tired and I was informed not to worry but that it was just a side effect of the Gleevec and that it would get better as the months go on.

In July we went on vacation and after our vacation I could not remember much. From what I have been told, I slept all the time and had a low grade temperature and my speech was slurred. I went to my doctor who ordered a blood test and a CT scan (which I do not remember doing at all). My test came back with abscess and that the hole in my stomach had returned.

I just got out of the hospital on September 1, 2006 and I am now on an infusion feeding system and a left side gravity drain tube once again. Today September 8, 2006 I had another CT scan and tube check done in Seattle and found out that the infection has cleared but I still have a hole in my stomach. I decided that enough is enough and that I was going to approach the doctor with what else can be done to repair this hole, since my body was tired of the 3 previous times to repair the hole, but it kept reopening. The doctor decided to keep me on TPN (feeding in the veins) and to keep the gravity drain in my left side and start me on clear liquids and then cream foods. He will make an appointment for a doctor to go down my throat and use a type of glue to repair the hole. If this works I will not need another surgery. Let’s hope and pray that the procedure will work and I will be able to eat for the holidays for the first time in a year. The doctor will also take a biopsy at the same time and make sure that the cancer has not returned and I am hoping that my GIST will stay away until I can gain strength and start my Gleevec again and hopefully keep the mass from returning. My road with GIST has been a learning experience and I have met a lot of friends through the Life Raft Group who have given me strength and courage. I have shared information with the medical professionals in my area that are not familiar with GIST as well as share with co-workers, family and friends.