In our monthly patient and caregiver stories, we share our community’s stories because each GIST journey matters. Your experiences as a rare disease patient or caregiver create a tapestry of strength, resilience, and shared understanding. By sharing, you not only break the chains of isolation but become a beacon of hope for others facing similar challenges. Together, these collective narratives shape a powerful force that drives awareness, research, and advocacy. Your voice matters, and by sharing your story, you contribute to building a stronger, more connected, and empowered rare disease community. Help others realize that even though they battle a rare disease & that each GIST case is unique, they are not alone.
Our Patient & Caregiver of the Month for November are Jeffrey & Zelda Sheppard.
Zelda & Jeffrey, Georgia Photo credit: Cogent Biosciences*
Jeff – A Survivor’s GISTory
There is this quote by Dalai Lama XIX that reads: “Happiness is not something ready-made; it comes from your actions.” This quote resonates with me because I can replace the word “happiness” with a word or phrase and the quote still rings to be true.
Initially, I went into the doctor to discuss a few abnormalities: #1 – I noticed that I was getting tired faster than normal; #2 – I noticed a decrease in my food consumption; #3 – I noticed an unexplained lump on my chest.
My primary care doctor ordered a biopsy of the growth in my upper abdomen. At that point, it was unclear exactly what the growth was, but it was huge and needed to be removed immediately. One of my insurer’s best surgeons reviewed the biopsy results and recommended immediate surgery. I remember telling my surgeon that we needed to schedule the operation after I attended a National Boy Scout Jamboree in Virginia. My life revolved around being a Boy Scout Assistant Scout Master and working as a laboratory manager with the United States government. Even as the surgeon urged immediate treatment, I was still thinking about the life and commitments I had planned.
I did not go on the campout. After surgery, I was told that the surgeon had removed a mass the size of a soccer ball and that it had ruptured. A few days later, the biopsy results confirmed GIST, a gastrointestinal stromal tumor, and I was told I would take 400 milligrams of Gleevec daily. When I asked how long I would need it, the doctor said I would take it for the rest of my life. After many successive scans, however, I was declared to have no evidence of disease (NED) in 2019 and advised to stop Gleevec. When the COVID-19 pandemic began, I was also not receiving follow-up scans. During this period, I did not know about The Life Raft Group (LRG), and I was not seeing a GIST specialist. Had I known about the LRG, I would have been better informed and probably would have taken a much different direction.
Near Thanksgiving in 2021, the familiar fatigue and feeling of fullness returned. My wife and I went to an urgent care clinic associated with my insurance. Because of pandemic restrictions, we expected Zelda to be turned away, but they allowed her to accompany me. A CT exam found two sizable GIST tumors. I restarted Gleevec, and the tumors began to shrink, although a mass remained. A new surgical team, again without a GIST specialist, prepared me for surgery #2. Complications kept me in the hospital much longer than after my first operation, and I was eventually sent home on IV feeding for another extended period. During that recovery, I was not taking Gleevec or receiving any type of chemotherapy. I still wonder whether the time without treatment gave the cancer opportunities to grow and change, but I do not know the answer. Eventually, I came off the feeding tube and restarted Gleevec. My scans continued to show hyperactivity that seemed to point to residual disease even after extensive surgery to be cancer-free.
After my second surgery, the masses initially appeared stable, but they eventually began to grow again. My surgical oncologist, who was not a GIST specialist, told me to prepare for surgery #3. That operation removed additional organs, part of my diaphragm, and my entire stomach. My esophagus was connected to my small intestine through a “rebuilt structural connection” that (in my opinion) is no comparison to the stomach that God gave me. Healing was slow and painful. After the third surgery, I lost a significant amount of weight that I have not yet been able to regain.
During surgery #3, I requested to have the tissue genetically studied. A CARIS study was done on the extracted material. It was found that I had two mutation factors: exon 11 and exon 17.
After surgery #3, my wife began searching for support. She believed we could not be the only people facing circumstances like ours. That search took an unexpected route: while looking for famous people with GIST, we discovered Doctor Moe and The Life Raft Group.
I still feel a sense of loss from surgery #3, but through The Life Raft Group I gained a new family. Becoming involved with LRG brought me into the GIST community, where I now serve as a GIST mentor. Among the GISTers I have met, I have seen a tenacious pursuit of treatment and a cure, alongside a genuine commitment to enjoying life.
Without an informed support group or a connection to the LRG, we struggled. We felt managed by the healthcare system without understanding that we needed GIST specialists and GIST surgeons. Looking back, I wonder whether knowing about The Life Raft Group earlier might have helped me avoid surgeries #2 and #3—and whether I might still have my stomach. I cannot know how things would have turned out, but those questions stay with me.
So as we look at our life as a whole, we return again to the Dalai Lama’s words: “Happiness is not something ready-made; it comes from your actions.” We are choosing to put those words into practice by continuing to explore the great outdoors together. For me, that includes fishing and hunting. For my wife, Zelda, it also means staying abreast of scientific technology and exploring how it relates to Holy Scripture.
Zelda – A Caregiver’s GISTory
In 2013, when Jeff was diagnosed with GIST, everything happened so quickly that I struggled to grasp how serious it was. One moment he was preparing for the most exciting scouting event of the year; just a few days later, I was sitting in a hospital surgical waiting room. Until then, I had held tightly to a revelation: God loved Jeff and me so much that I believed we did not have to be sick when our time on earth was up. I believed we could leave earth healthy and happy, after living at least 120 full years. That was my faith and my hope, and it still is. But in that waiting room, the world seemed to stop spinning—at least for me. I watched people outside the windows and on television scurrying around, their activities and worries suddenly seeming meaningless beside what we faced. For the first time, I appreciated the fragility, beauty, and fleetingness of life. My love for my husband felt enormous, yet it could not make this all go away.
I felt a need to protect my husband emotionally, spiritually, and physically, so I set my own needs aside and focused on his healing. He recovered well from that first surgery and did relatively well on imatinib, also known by the brand name Gleevec. When he was first advised to stop taking it, I was cautiously optimistic. I had been assured that if the tumor began to grow again, he could restart Gleevec and everything would be okay. Looking back, I do not feel that the decision was well informed. I try not to dwell on how our life might be different today if he had stayed on Gleevec. I cannot know the answer, but I still feel the regret.
Fast forward … after surgery #3, Jeff is living with the loss of several organs including the total loss of his stomach and receiving subsequent lines of therapy for resistant GIST disease. Alongside those losses, we have gained something we did not have before: a deeper appreciation and respect for life, family, friends, faith, and our friends in The Life Raft Group. We finally have a GIST specialist who works with our Kaiser doctor, and we are armed with more information. That support is part of why we are sharing our story. I do not want anyone else to go through steps that, looking back, we believe might have been avoidable. If sharing our experience and working with medical and pharmaceutical researchers and teams can help improve others’ quality of life, we are all in.
I have learned that caring for Jeff means leaving room for both of us to breathe. At first, I felt that everything needed to be handled with urgency and precision. Giving him space to process what he was experiencing took time, because I had to recognize that my understanding was only part of the picture. I needed to make room for his experience as well as my own. Taking time for myself has become non-negotiable: I have to show up for myself to show up for anyone or anything else. What that looks like changes over time. I love going to the gym for group dance because it is self-care and so much fun. I also love learning how our bodies are made to work and what working well should look like. Alongside all of this, I have learned to leave space for miracles. Something greater must come from this!
*Jeffery and Zelda shared their story with Cogent Biosciences as part of their Below the Surface program.
Learn more about the LRG Patient Registry!
If you want to be our LRG Patient of the Month or Caregiver of the Month, please see the criteria below.
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 our Data Mgmt. & Research Team, for more information: patientregistrydepartment@liferaftgroup.org
