As a part of our Faces of Courage series, we are featuring a patient story each month. Each one of our members has a unique story to tell, but they all reflect the intrinsic courage of those who face the challenges of cancer head on, with dignity, strength, and passion for life.
Our Patient of the Month for August is Guy Jones. Here is his story:
Nowadays when asked about my cancer, I tell people, “Cancer is the best thing that has happened to me.” This hasn’t always been the case. All my life, like most people, I was afraid of cancer. Deathly afraid.
In 2006, at the age of 54, my wife had a stroke from being in an electric wheelchair since she was 28 years old due to muscular dystrophy. In 2012, three years after becoming paralyzed and put on a ventilator, she passed away. I was so worn out from taking care of her that I just knew something bad was going to happen to me. I heard about Christopher Reeves’ wife dying of cancer shortly after he died and it was said that she was just worn out from taking care of him. So, I decided that one way to push away the fear was to buy cancer insurance. After all, I never win the lottery so if I had cancer insurance, I knew I would not get cancer.
In the fall of 2016, I was broke and behind on my health insurance. I considered dropping my cancer insurance, which I was also behind on paying. On election night of 2016, I was driving home from work when I was involved in a car wreck. Standing among the wrecked cars amidst the rain and flashing lights, a fireman in a bunker coat asked me how I was feeling and if I would like to go to the hospital. I said no, I was only a little shook up. He started to turn away when I heard my wife’s voice telling me to go to the hospital, so I changed my mind.
To make a long story short, I went to the hospital, had a CT scan and was sitting on the gurney watching the election results when the doctor came in. It was just like a movie that I can still see today: he said the proverbial “good news/bad news” announcement, and I was officially a member of the club. About a week later, I met the oncologist at the same hospital. She said she wanted to do a transthoracic needle biopsy by a general surgeon. I spoke to my sister, who had had a sarcoma, and she said it was too dangerous if it were to end up being a sarcoma. This was my first time needing and seeking out the advice of a cancer survivor.
I called the Seattle Cancer Care Alliance, which I had heard was the best place for cancer care, though I still did not have an official diagnosis. I was directed to a scheduler, who said that they only took cases of those with a cancer diagnosis. Her name was Kristen, which is a Norwegian name. I was scared and didn’t want to hang up, so I started telling her about how I had worked in Norway and Sweden for 28 years. We talked about the Norwegian pronunciation of her name. Suddenly, she said to me, “While we were talking, I did some research and I can see your scan from the other hospital. How about I talk to one of our surgeons and see if they will make an exception?”
That is how I ended up getting an Endoscopic Ultrasound Fine Needle Aspiration at the University of Washington by people who knew what they were dealing with. The pathology came back as GIST, exon 11 with too little material to gauge a mitotic rate, 7×7 cm. I was started on Imatinib 400mg and surgery was postponed to allow it to shrink.
There is a lot more to my story, just like everyone else on this journey. Fast forward to spring of 2019 when I joined The Life Raft Group. Has anyone ever said to you, “You know, not everyone who has cancer talks about it every time something goes wrong,” or “grandmother had cancer, but to the very end she never complained.” When I found The Life Raft Group, I realized there was a “safe place” for me, where I would never be judged for being frightened or wanting to share my story with people who I cared about and who cared about me.
So, why do I think that cancer is the best thing that has happened to me? This is something I certainly didn’t believe before my diagnosis, and it was before I met the people at The Life Raft Group. It was before this summer, when I thought cancer really mattered.
A group of us GISTers got together in Raleigh, NC this past spring. My daughter, 32, was visiting me and joined us. She is an artist who has muscular dystrophy like her mother. She had been living in Los Angeles for the past 10 years as a starving artist. She decided that she wanted to come home and take care of me and I was going to take care of her as her disease progressed, which she finally accepted.
In June, I was awakened with a call from the trauma hospital in Seattle. She had a seizure and fell in a store suffering a non-recoverable brain injury. I turned to my friends at The Life Raft Group. This is when I realized that, at the age of 66, I would have a normal life expectancy of about 12 years without cancer. After meeting survivors of GIST, I realized that it would probably not kill me before I would die anyway.
Now I really understand that it isn’t just that someday I will die, but it is the realization of how precious life really is. I know I am going to die; maybe not from this cancer, but now I have accepted death as a fact and am quite over it. I realize what a gift life is for me. Now that I have gotten the fear out of the way, I can get on with living. I can do what I like most. I can help other people. I am no one special, but I am now fully aware that what so many people are struggling with – the fear of cancer – is overrated.
I am so blessed to know the people of the LRG who have helped me make sense of the journey I have been on my whole life. Thank you so all much.
Coping with GIST
Physical issues: My tumor is still primary and is not causing any symptoms, but the treatment certainly is. I still get nauseous every time I take the Imatinib and resolve that partly by taking it before bed and sleeping it off as much as possible. I sometimes take metoclopramide when it is really bad, but the risk of permanent Tardive dyskinesia or involuntary muscle movements limit my use. Diarrhea is well managed by Lomotil now, but for the first two years it was a constant and overwhelming situation. Magnesium deficiency and the resulting cramps are also a problem. I fought for TDM and came in low at 763 and successfully increased my Imatinib dosage to 500. I am hoping to get resection before it spreads. My tumor is now 2.5 x 4 because of Imatinib.
Advice to Fellow GISTers
Even if you need to ask directions, you are still in command of your GIST journey.
Hobbies You Enjoy
Many of my life hobbies are not open to me any more due to overall health issues. However, the primary criteria for me in choosing activities is to be with other people. I especially like doing things with my children. Unfortunately, I do not have any grandchildren yet (hint, hint, children). I like to help people with their Medicare insurance.
Motto to Live By
“Life is difficult. This is a great truth, one of the greatest truths. It is a great truth because once we truly see this truth, we transcend it. Once we truly know that life is difficult – once we truly understand and accept it – then life is no longer difficult. Because once it is accepted, the fact that life is difficult no longer matters.” M. Scott Peck
Each member story reflects the individual patient’s experience. GIST is not one disease, but a family of diseases and each patient has a unique set of symptoms and manifestation of the disease.
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