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 Caregiver for December is Jing Goldsmith. Here is her GISTory:
Jing’s GISTory
Chris & Jing Goldsmith, Minnesota
Back in 2003 my husband Chris experienced months of unexplained symptoms that were continually dismissed by doctors that sent him home with prescriptions for painkillers, steroids, and muscle relaxers. Frustrated with these experiences, we joined a concierge medicine practice in hopes of getting better care, and within just a few weeks, we discovered he had cancer.
The initial shock and navigating the first few months completely rocked our world. At our first oncology visit, the radiologist didn’t know he was on speaker phone when he casually said to our oncologist, “This is the type of scan we present as a case study at national conferences.” Chris had an 8cm primary tumor sitting perfectly atop his bladder and was metastatic with a high mitotic rate. There were four large metastases to his pelvis and 15 measurable liver lesions, the largest the size of a golf ball–and too many smaller ones to count; surgery was completely off the table.
It felt utterly devastating at the time. We had just celebrated his 47th birthday weeks earlier, and our daughters were only 14 and 16 years old. I met Chris when I was in elementary school and didn’t really know a life without him beside me. After a few days of shock and tears, we both went full steam ahead. I learned as much as I could about GIST, and we sought out 2nd, 3rd, and even 4th opinions while relentlessly staying on top of our insurance company to move all the pre-authorizations through quickly.
Fortunately, Chris had an amazing response to imatinib as within days of starting it his pelvic and groin pain started to lessen. His tumors shrank with each scan, and by 6 months he was declared NED! We didn’t even know that was a possibility with all his metastases. We enjoyed a pretty normal life until he got E. Coli food poisoning which started a string of events that led to finding a recurrence in March 2025. He had a very fast growing 5-6cm pelvic tumor that caused his hemoglobin to drop down to 6 and 7 several times. He was fortunate to have surgery at the NIH where Dr. Blakely performed a small bowel resection and removed over 80 peritoneal nodules! We had no idea how extensive his disease was and were so grateful for a “fresh start.”
Today, Chris is on 50mg Sunitinib for an exon 13 mutation and is feeling great on it. While we were sad and nervous about switching drugs, it’s been a smooth transition, and we are optimistic that it will work for him for a long time. We continue to merge both western and eastern medicine approaches to help Chris feel his best, and he’s back to enjoying life to the fullest. We could not be more thankful to everyone at the Life Raft Group and all the GIST experts out there working tirelessly for all of us affected by this rare disease.
Coping with a GIST Diagnosis
I am a caregiver of others by nature, so I have to consciously remind myself to take care of myself too. For me, that looks like going for daily walks while listening to podcasts, yoga, meditation, meeting friends for coffee, and connecting with my close circle of friends for support. I have also utilized professional counseling and anxiety medications at different times which have helped me tremendously during rough patches.
A roller coaster of emotions is inevitable for anyone dealing with a serious diagnosis. Countless ambulance rides, ER visits, and hospital stays over the years are bound to wear us down. During heavier days, I always come back to the song “Just Be Held” by Casting Crowns. It speaks to my heart in the place of the unknown. We may not always have answers or know what the future holds, but I am reminded that our tears are never wasted, there is beauty that comes from hard experiences.
Goldsmith Family
Hobbies They Enjoy
I enjoy traveling, hiking, and being immersed in nature. Chris and I have visited 25 countries together, and although we haven’t traveled as often since his diagnosis, we’ve taken trips to Banff and Zion National Parks, and keep returning to the beaches of Mexico and Florida to enjoy the sunshine. I also enjoy scrapbooking, watching true crime documentaries, and spending time with our teenage daughters.
Her Advice for Fellow GISTers
Your mental health is just as important as your physical health. For both caregivers and GISTers, it’s vital to address your emotional well-being and not ignore it. Our physical and emotional health are deeply connected. Taking ownership of our mental health can be difficult for some people, so be gentle and patient with yourself and your spouse/partner and give one another grace in the process.
#GISTLife Motto
We Can Do Hard Things–We are capable of so much more than we think we are. And Don’t Sweat the Small Stuff!
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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