As part of our Faces of Courage Series, we are featuring a patient of the month on the 13th of each month.
Why is the number 13 significant? 5,000 people are diagnosed with GIST each year in the United States.
That’s 13 people diagnosed each day. Read more about this on our Rare 13 site.
Our Patient of the Month for November is Greg Crow. Here is his story:
I’ll never forget where I was when I learned that I had GIST cancer – or what day it was. I had noticed a lump near my belly button and had hoped that my prostate problem, for which a laser procedure was already planned, was the culprit. Perhaps the bladder, which I could not empty at the time, was what I felt. After my procedure, the lump was still there. So off I went to my gastroenterologist. He sent me to have an MRI. At this same time, my blood pressure had rocketed to dangerous heights and I was seeing my cardiologist for treatment.
On leaving an appointment with him, while sitting in the parking garage, I called my gastroenterologist’s office to get my results. I was told to arrange consults with a general surgeon and an oncologist immediately. That day was September 23, 2015, my 66th birthday! What a birthday present! This began the journey I shared in my note to Denisse: the biopsy revealed GIST cancer; KIT mutation, exon 11 with a slower mitotic rate. I was so fortunate that it could be treated. Although I had complications in removing tumors and reattaching my small intestine, I am grateful to have now recovered my life and activities. It was quite a journey, involving 8 surgeries by the time everything was done, including reversing my ileostomy in the Fall of 2016.
Coping with GIST
I feel quite good physically. I used to experience dizzy spells at times when I exerted myself and that has subsided to almost nil. My stamina is very good, though not what it used to be, I’m sure. I am fortunate not to have much in the way of side effects from the Gleevec. I do have some interesting muscle spasms, but I am used to that now. I have a trace of edema in my ankles. So in “coping” with GIST at this time, it is really a question of how I am doing with it emotionally and mentally. I mentioned that as time has gone on, the memories of the many experiences I had when I was first diagnosed and through my many surgeries and rehab are fading, though I will always remember them. I know that the disease is still with me though it is likely just microscopic at this time. I think about that from time to time and I know other battles are coming but my experience daily really is one of gratitude for the many small things I can do again.
To be honest, I experience that feeling of gratitude MULTIPLE times a day without aiming for it per se, and I find that that carries me quite well, which is another thing to be grateful for! So it is definitely a positive cycle. I do take note of it each time I experience it and kind of “bank it” in my mind. I think that storing positive experiences strengthens me. My Admin at work is battling cancer as I write this. This is her second battle with it after some years of remission from a different cancer. That reminds me of my condition of course and causes me to find even greater value in any time spent with loved ones and my work and music right now. Overall I am doing quite well and that has freed me up to be more able to help others at home and in my practice who have needs now.
Advice to fellow GISTers
I have noticed now, three years later, that many of my memories of hospital and rehab events are becoming more distant, although I’ll never forget them. I am so very grateful for all the care I received. I recall a day in rehab when I decided to number my blessings. I actually spent time noting them in my mind. I’m a psychologist and I’ve always known that a positive mindset and the way we talk to ourselves is very critical. I’ll never forget how that belief was reinforced that day. The way I felt, through all of my difficulties (I was so weak that I literally had to learn to walk again), was remarkably better with those blessings counted!
My wife, Gail, and I are believers and are very active in our church. We have always been “open books” when it came to problems we face, except when to do so would violate someone else’s privacy. The outpouring of support we received from so many of our church friends and neighbors was amazing and I noticed that when I posted updates on Caring Bridge there was a fresh sense of feeling what I call “buoyed up.” Gail has been a trooper – the most faithful wife a man could have. She saw me through this, the toughest journey of my life. I had to let her, and all the others care for me, the caretaker of others! It was after we had gone through the worst of my illness that our son, aged 35, was diagnosed with an unknown lung disease in January 2017. He passed on April 9, 2017. The strength we developed and the support we had in place were invaluable as we went through yet another trial, from which we’re still recovering.
Hobbies you enjoy
Music has always been very important to me. Gail and I play in our church orchestra. The instrument I play is trombone, which requires me to blow air into an instrument through a mouthpiece. We use our abdomen to move that air. I am happy to say I can do that despite 8 abdominal surgeries! We have regular services we do and are preparing concert series for Christmas. I think most people see me as back to normal and aside from some muscle cramps and a trace of edema in my ankles, I feel like my old self. It took a long time but, with what I would feel “upticks” in my strength, stamina and energy every 6-8 weeks or so. This recovery allowed me to attend, in person, the ASU football games I so love with my grandson, Aliester. It was important for me to be able to get back there. Gail and I even recently completed our first ever cruise. We went to Alaska, and I was able to do many of the excursions that were offered. We appreciate each other more than ever.
Motto you live by
If I had a motto, it would be to practice gratitude and count your blessings, for all the reasons I have mentioned. I find that what I started that day in rehab has really stuck with me. There are NO days that I do not feel grateful for, even the little things, like being able to nearly jump out of a chair and walk briskly like I always have. Although I love my work, I have cut back on my hours and spend a lot more time with Gail. Many of the problems I face in my regular life are now seen as “small potatoes” in the big scheme of things. I have a new understanding for my clients who have had cancer and or are going through really tough times in their lives. My ability to “be there” for them no matter what trials they have gone through is different now because of my journey. Many of the things that I used to say were “over my windshield” are not longer so, and that makes a big difference in what I do.
Criteria for Patient of the Month
- Patient must be a member of the LRG Patient Registry
- Patient is an active member of the Patient Registry, continually providing medical updates
- Patient’s record should be at least 80% up-to-date
- Patient has a GIST/PRiME account
- Patient must agree to provide consent to share his/her story to our GIST community on our website and social media
Interested? Contact Denisse Montoya, LRG Patient Registry Director for more information: firstname.lastname@example.org