/Believe in Hope – A GIST Story

Believe in Hope – A GIST Story

By |2018-10-29T13:42:57+00:00June 29th, 2018|Member Stories, Newsletter|

 Virginia-TerrebonneThis story is shared by Virginia Terrebonne, GIST Patient and LRG Member, and is part of our Faces of Courage series.

My name is Virginia VanMeter Terrebonne. I am a 56-year-old female originally from Michigan. I was living in rural Louisiana with my three dogs when I was diagnosed with GIST. Thanks to my sister, Veronica, I am now living in Florida with my dog, Hope. I moved to Florida to be closer to my sister.

In January 2013, a small mass was found on my adrenal gland after having a CT scan for another issue. I was sent to a urologist who said it was nothing to worry about and suggested a follow-up  CT scan in six months. When I went back to the urologist for that six month scan,  he said let’s wait six more months, I agreed. That was a big mistake.

One year later, January 2014, a CT scan found a large 13.6 x 11.2 x 10.6 mass in my left abdomen. I was sent to a general surgeon who did an EGD, which is an endoscopic procedure, and a colonoscopy. The biopsy of the spot in my stomach came back negative. However, the surgeon knew I had stomach cancer but not what type. I was then sent to an oncologist. A search online found that stomach cancer was almost always fatal. I thought I was going to die. It was so unreal. I remember thinking, “This cannot be happening to me.”

Next, the oncologist set up a needle biopsy at the local hospital. My sister Veronica drove from Florida to Louisiana to be there for the biopsy. The day before the biopsy the hospital called and said the procedure had been canceled. I found out later that it could have caused the GIST to spread and that my surgeon had intervened to cancel the biopsy. My surgeon then scheduled me for another EGD. The plan was to take samples and while I was on the table, send it off to the lab for testing and to keep doing this until a test came back positive.

Finally, an Official Diagnosis

The next month,  February 2014, I was officially diagnosed with GIST. My surgeon said I was very lucky as I had the good kind of cancer. Then he proceeded to tell me about the life-changing surgery that was upcoming. I was not feeling very lucky but at least he gave me hope. When I went to the oncologist for the treatment plan it consisted of neoadjuvant Imatinib (Gleevec) for six months to a year to shrink the tumor,  then surgery. I don’t remember if I was offered any other option. All I remember is my oncologist saying, “If you were my mother I’d recommend this treatment plan.” After that I don’t think I heard anther word she said. All I could think about was Am I old enough to be your Mother?. I think this thought consumed me for a few weeks. Once I realized that yes, I am old enough to be her mother, I then accepted the fact that I have cancer.

Because of the young age of my first surgeon, I felt I needed one with more experience and a second option. I went to another surgeon and ended up staying with him. He was an oncologist surgeon and had extensive experience with stomach surgery and was very familiar with GIST. He actually had trained my first surgeon. This surgeon agreed with everything my previous surgeon and oncologist had said about treatment. He was very aggressive in my treatment plan. When there was a delay in getting approval for the Gleevec he got on the phone and got the ball rolling. I also had a CT scan every 30 days after starting Gleevec.

After the first 30 days my tumor had shrunk to 8.2 x 7 x 5cm, a total of 15.2cm gone!. I was so happy to get this news. The second month there was no change. I was crushed; it’s hard to explain what was going through my mind at this time. I’d break out crying for no reason at all. This caused problems for me at work. They wanted me to go on what I call “happy pills”, and see a counselor. When I spoke to my oncologist she said what I was going through was normal and that if I wanted something she would give it to me, but it was not necessary. I opted to let nature take its course with my emotions.

When my 90-day CT scan came up, I was real nervous about it and was again expecting bad news when I went to see my surgeon. But he came into the room with good news. My tumor had shrunk to 4.2 x 6.4 x 5.5cm and it was time for surgery.  This was another 4.1cm gone from last time. I was totally not expecting this as my oncologist said six months to a year before surgery and it had been only three months.

Both of my sisters were coming to Louisiana to be with me for my surgery, so it was a few weeks before we could schedule it. I was very nervous about this surgery as I was told it was life-altering and they really did not know what would be removed until they actually opened me up and looked at everything. The tumor on my stomach was at the top close to the esophagus and was also touching my kidney and spleen as well as the adrenal gland tumor, so they were unsure if these organs would be impacted as well. While waiting for my sisters to come, I went to the counselor my employer had suggested. The first thing this guy asked me was “Am I prepared to die?”. I mean really, I’m going in for major surgery that could very well cost me my life and this guy is asking me if I was prepared to die. I wanted to tell him of course I’m not prepared to die. I’m too young to die! At this time, I really could have used some encouragement not negativity.

July 30, 2014 my surgery was finally performed. I was in intensive care for three days afterward, then transferred to the cancer ward. My lower esophagus sphincter and most of my stomach were removed along with the adrenal gland tumor. I was not allowed to eat or drink anything by mouth for about 30 days. The whole time I was in the hospital all I wanted was a drink of water. I really was not hungry but desperately wanted a glass of water. To this day I can only drink spring water; anything else tastes nasty.

While I was in the hospital they would send me for a swallowing test. I remember the first test the barium leaked out where the stomach and esophagus were attached. The technician asked me if I would be returning to surgery to have it fixed. Oh no, not more surgery. Eventually the bond between the stomach and esophagus healed without more surgery.

Three and a half weeks after surgery, they started me on the feeding tube in preparation to go home. I was home less than a week when my incision burst, my feeding tube got clogged from the antibiotic and I had a fever. Back to the hospital I went for a week. Finally, the time came for me to be able to eat soft foods. Scrambled eggs, mashed potatoes and pudding. Eight weeks after surgery I was allowed to eat anything I wanted but am supposed to eat six small meals a day.

Challenges Post-Surgery

At the same time, I was released to go back to work. Both of my sisters had gone back home. I was in no way physically or mentally ready to resume working. I had no idea how to eat or even what to eat. To this day I still have issues with eating. I had a really hard time adjusting to working eight hours a day as my job was an hour away from home, so my days were 12 hours long. I suffered from dumping syndrome; I was so tired I could not concentrate. I’d wake up in the middle of every night sick to my stomach.

For the next two years after my surgery, I thought I was going to die or lose my mind. Actually, at times I wished for death as life was so terrible for me at this stage. Then the local hospital sued me. I had literally been living on credit cards, spending a great deal every month on medical expenses.  This was money that I just did not have.

My sister Veronica invited me to come live in her condo in Florida. This way I’d be close to both my sisters. I’ve been here for almost two years now and I can definitely say I feel a lot safer here. Mentally and physically I feel a lot better too. I now see a GIST specialist in Miam and I’ve joined a Living Strong exercise class at the YMCA where I met a lot of wonderful people. I’m finally living instead of existing. I’ve filed for bankruptcy so am getting my finances back in order.

My life has changed in so many ways. Because I am missing my esophagus sphincter I can no longer sleep lying flat on a bed and must sleep sitting up. I still suffer from reflux and I have more doctors than I do shoes. I have issues with eating and often feel ill after eating. I’m tired all the time; just going grocery shopping wears me out. My future is uncertain, but, I thank God I’m still alive and able to enjoy life.

I don’t think I could have made it through this difficult journey without the help of my sisters. Both came and took care of me and my dogs while I was in the hospital. I’ll always be grateful for their help and their continued support. My boss, Chris, also was a big help; she actually came and visited me in the hospital and at home when I was discharged. She also allowed me to keep my job by working from home here in Florida. I’ll always be grateful for all she has done for me. I am also grateful for the GIST community –  my very special friends who know how I feel and what I’m going through. And although I lost two of my dogs before moving to Florida, I still have my little girl Hope who is always there for a belly rub. She always knows when I need cheering up.

Living with cancer is not easy, physically, mentally and financially. We can only live to the best of our ability, attempting to live as normal a life as possible. I am very fortunate to have my sisters, my dog and my job. All three have given me the means and reason to keep on going.

My mottoes are “Life is Good”, and “Hope: Believe in It.” Cancer is not the end but the beginning of a new chapter in our lives.

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