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 Becky & Rich Owens. Here is their GISTory:
Becky’s GISTory:
Becky and Rich Owens, Maryland
I was a 41-year-old physical therapist living in California when I received my GIST diagnosis in the year 2000. I was told that my tumors were most likely benign and breathed a sigh of relief when I received the “all clear” CT scan reading on the two-year anniversary of the removal of my primary tumor. New tumors were found in 2004 on a CT due an unrelated bronchitis episode; a discovery that rocked my world and propelled me into survival mode. In 2015, I learned that I have a germline Succinate Dehydrogenase (SDH) mutation driving my GIST. I had inherited the mutation from my mother who died as the result of an SDH-deficient Pituitary Neuroendocrine Tumor when she was 41 years old.
My cancer journey, consisting of targeted chemotherapies, a clinical trial, ablations, and surgeries, radically changed my life. Every battle involved a team of warriors. Mine came in the form of amazing nurses, researchers, physician, family members and friends.
I often think about how cancer has affected my life. Cancer survivors are blessed with two lives: your life before cancer, and your life after. I choose to live my second life with more urgent intentionality. My best friend and husband, Rich, and I are scuba divers. We desire to travel and to see as much of the world (above and below water) as possible. I know it is unconventional to say, but I wouldn’t trade my life after cancer for my life before cancer. The experience has become a part of me.
I can’t express enough appreciation to the patient support community for providing their shared experiences and struggles, celebrated victories, and words of advice. When you hear the words, “You have cancer,” you join a club that nobody wants to belong to. Yet, members of that club become your most intimate friends. I encourage everyone to embrace each other. You aren’t alone.
Rich’s Tells the Love Story:
She was 14, I was 10. She was a baton twirler for the Falls Church High School Marching Band, and I was a band member’s snot-nosed little brother. Becky and I never met formally during this period of time; however, I thought she was one of the prettiest things I had ever laid eyes on. I never forgot her for 35 years though we both travelled very different life paths. Then, July 4, 2012 we were finally formally introduced! I remember sitting across the table from her at the picnic and thinking “Wow”, just Wow! We have been at each other’s side since that wonderful 4th of July when the fireworks started before the fireworks…
About Caregiving:
As a caregiver, I think my most important role is to be there to support Becky in any way that I can. Often, that just means being a chauffeur to and from scans, office visits, and the like. Sometimes it’s just to listen to her discuss her day’s complexities and while trying not to “fix it for her”. I try to give her as much time as I can, as it is probably the most valuable thing we have. No doubt about it, Cancer “SUCKS”! But as Becky has said, it has helped define her life in such a way it has brought out her best life. As for me, I agree…
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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