As a part of our Faces of Courage series, we are featuring a patient or caregiver 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 January is John Abrams. Here is his story:
My story begins in 1997, when after many months of difficulty eating due to pain, I had an endoscopy that revealed a sizeable mass on my stomach. I had it removed but we knew it had probably metastasized as it was also attached to my diaphragm. Back then there was no diagnosis for GIST. It was considered a leiomyosarcoma and there was no definitive treatment plan. Interestingly, my original pathology report says I had a leiomyosarcoma, with Gastrointestinal Stromal Tumor in parenthesis. My oncologist and I were aggressive and decided to proceed with four months of traditional chemotherapy. Following that, at my oncologist’s request, the surgeon opened me up again to see if he got everything. It looked clean so I said to my oncologist that the chemo must have helped. His answer was “We’ll never know”. That felt weird.
Four years later I had prostate cancer and had it surgically removed. Two years after that, I had a gall bladder attack and while the surgeon was removing my gall bladder, he noticed an inflamed lymph node. Biopsy revealed GIST cells. I started on 400mg of Gleevec in 2003 and continue taking it today. One year later, I was diagnosed with a rare non-Hodgkins lymphoma and opted to treat it with 20 sessions of radiation therapy.
Coping with GIST
Being that I was 47 when all of this started, I felt I was too young to just live for today as I had a family to support. Besides, no one really gave me a death sentence, so I was diligent with my scans and kept on living. One of my brothers once asked me how often I think about my cancers. I had never really thought about that, but the answer turned out to be “every day”. Although it does not consume me, I do worry when it is time for a scan or if I get a little stomachache. I am extremely fortunate to have such a wonderful family as my main coping system. My brother is my internist and my oncologist was a patient of mine in my dental practice before I became ill. I thought that was more than enough until I found The Life Raft Group. The people I have met have enhanced my life in too many ways to articulate.
Advice for Fellow GIST Patients
My biggest advice to fellow GISTers is the same as you have heard over and over again. Find a GIST specialist (although my oncologist is not, I have had several second opinions from GIST specialists. If your oncologist is insulted that you asked for a second opinion, switch oncologists). Be sure you get mutation testing. Advocate, advocate! This is a must, either by a loved one or yourself if needed. Do not leave until your questions are answered. Stay involved with Life Raft. Use their mentors and use everything they have to offer.
Finally, continue to live life and enjoy what you have always enjoyed. I know this isn’t always possible as our lives have certainly changed, especially with some of the side effects we all have but do all that you can.
Hobbies I Enjoy
Seeing as I had to retire early as a dentist due to severe cramping in my hands, I am always finding new things to keep myself busy. I flip houses with my son, I am a consultant for a few dental practices and stay highly active athletically. I play golf often and box with a trainer as often as my body allows (too old to spar anymore).
I guess my motto would be to keep living life to the best of my altered ability. I consider myself “One of the luckiest unlucky guys I know”.
John is one of the LRG’s long-term survivors. In the future, the LRG will be publishing individual stories of long-term survivors. If you are a long-term survivor, and want to tell your story, please contact Pete Knox at firstname.lastname@example.org.
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 GIST 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 GIST Patient Registry Online
- Patient must agree to provide consent to share his/her story to our GIST community on our website and social media
Criteria for Caregiver of the Month
Caregivers are an important team of family and friends. They allow a patient to depend on them for support through their difficult journey as well as help with various tasks such as cooking, housekeeping, transportation and so much more. In conjunction with Life Raft Group’s Patient of the Month, we are showcasing Caregivers of the Month. We want to hear stories of the selfless supporters that stand beside our GIST warriors.
Interested? Contact Sahibjeet Kaur, LRG Patient Registry Supervisor, for more information: email@example.com