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 February are Carolyn & Mark. Here is their GISTory:
Mark & Carolyn, North Carolina, USA.
Carolyn’s GISTory
After careers in education, it is no surprise that my husband, Mark, and I chose to combine teaching with travel after retirement. We headed to China in 2016 to teach English for nine months at a private school for students up to grade 12. A few months into our adventure, I realized that I just did not feel “right.” This is what I told my PCP when I returned from China early. Thankfully, this doctor knew me well enough to realize that if I said something was wrong, something was wrong. Six weeks later, I was diagnosed with metastatic GIST.
We live near a big city with a cancer institute, so I assumed that I was lucky. It wasn’t long before I began to question my doctor’s expertise. Fortunately, I found The Life Raft Group where I received much needed information, support and guidance. I changed doctors! Even though this meant traveling, I have no doubt that my eight years of NED reports (No Evidence of Disease) is directly tied to the care of this team of specialists. Find your team! Do not settle for average! You are above average! Plus, everyone with GIST is nice! Proven fact…by me after my conversations with multiple fellow GISTers.
Strangely enough, I would not change my life! The people I have met, the doors that have opened to me, the experiences, and with the assurance that God has a plan for me…the past nine years have been so rich. And I plan on many more years of thriving.
Find your passion and get busy enjoying life. What makes you happy? Now is the time to follow your dreams. No one is promised tomorrow. Fortunately, I have a husband who encourages my passions and contributes to my desire to follow my purpose. We are both regular visitors to our local YMCA, because this makes us happy and we realize the benefit of doing all we can to have strong bodies. These two factors, plus my desire to help others with cancer, have led to my certification as a Livestrong leader as well as a Silver Sneakers fitness instructor. Did I say that I love my life?
Those who know me are well aware that our two dogs are a huge part of our happiness. Highly recommend a pet!
I have been known to use a few quotes in the past few years. Probably my favorite would be “it is what it is.” I have cancer. There is currently no cure, and I will take a drug the rest of my life. I cannot go back and change anything. I did nothing to cause this cancer, but I can make good choices moving forward. And I can control my attitude. Do not allow cancer to steal your joy.
Mark Tells Their Love Story
We met at a school in a rural town in South Carolina in the 1970’s. I was from Pennsylvania and she was from Virginia. I was in my second year of teaching, and she was the speech therapist for our elementary school. I was interested in meeting her and asked a friend to set us up. He never did though, and I finally got the nerve to ask her out. She accepted! We soon found out that we were destined to be together, and I asked her to marry me. She accepted and that is when the fun started, all the women in our small southern town were giving her extensive advice about the wedding we should have. We soon realized that a big wedding was not the best for us. Thus, we decided on a small wedding on an Easter Monday afternoon and have enjoyed life together since that time. What an adventure! We moved ourselves several times, bought a half-built house and finished it with our own hands, and started a family. Later, I went to graduate school at University of Virginia (UVA) and she worked at the UVA bookstore and on research projects. Near and during retirement we made several trips together to teach at an international school in Shanghai. We have also had the privilege to make trips to China, New Zealand, Australia, Thailand, Hong Kong, and Singapore. All these adventures and experiences have made our love stronger. Our 50-year anniversary will be here before we know it!
Caregiver
One of the things I have always loved about Carolyn is her passion for helping others. Having GIST has not changed this, she now has an added mission: to help others with any kind of cancer. My role as her caregiver has been to support her GIST journey by understanding the varied protocols for diverse types of GIST. This has been much easier given the support and training provided by The Life Raft Group via online materials, live webinars, and conferences. Learning from experts such as Dr. Trent and Dr. Blakely gave me a deeper understanding of all things GIST, something all caregivers need. As a caregiver, most of my role is being a good listener. Other times it requires me to be assertive in getting the care she needs. It is a great joy to watch her mission to help others with cancer each day. Thank you, Life Raft Group staff, mentors and volunteers!
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.
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
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