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 of the Month for January is Felicia Arroy-Scheffler. Here is her GISTory:
Felicia, California, USA
Felicia’s GISTory
I had been suffering digestive problems starting mid-June 2022. I ended up in the hospital three times for acute digestive pain during the period between 2022-2024. I had one CT scan, a colonoscopy, two endoscopic procedures, several X-rays, and lots of blood work, all showing no abnormalities. It was when I went in for a standard bone density test after my last endoscopic procedure that I discovered I had lost 25lbs over that two-week time span. That made me call my doctor and ask once more if maybe something was being missed. I was still having digestive issues and mild pain so with the weight loss I was concerned. My doctor agreed the weight loss was an issue and scheduled me for another CT scan.
Unfortunately, this time the CT scan showed not a normal GIST tumor but metastatic cancer in my pancreas and liver. I was declared stage 4. I do not have any tumors in my digestive system though, which my doctor says is abnormal. I am one of those rare cases where the disease doesn’t show itself till it’s gone metastatic. I am not eligible for surgery due to the number of tumors in my liver and where the tumor is in my pancreas. I have had two CT scans since diagnosis, and wonderfully enough the majority of the tumors are shrinking! Yeah, imatinib!
My reaction to the news was a sort of relief. I finally had an answer as to what was going on. I was not as devastated as my family. Two of my boys were like “You got this mom. We’re going to fight this.” But my husband, daughter and youngest son were lost. Dealing with that was the worst.
Coping with a GIST Diagnosis
I don’t dwell on my GIST. If I wasn’t taking a daily pill for it. I wouldn’t even think about it. I at first suffered from side effects of imatinib but at this point I am all good. My body has accepted it and I feel great. I just keep going along with my daily life. On occasion something may make me think about the longevity of my life and then I think “Oh yeah, I have cancer”. But I have always been a positive, oh well, type of person. I approached this with an “I got this” attitude. I had to sit down with my husband, daughter, and youngest son though and give them a talk about their attitudes. I was like “geez” I am not dead yet and I have time, so stop the crying and the doom attitudes. Let’s travel and have the best times I can till I go.
Her Advice for Fellow GISTers
Eat healthy. Stay away from processed sugars and foods. If it comes in a box or package, avoid it. Exercise regularly. Do the things you want to do. Don’t stop living. Half the fight is your attitude. Stressing will just feed the cancer. Do all those things that could help fight cancer. There are a lot of crazy ideas out there, if they sound like they fit in your life, try them. Can’t hurt, you’re going to die at some point anyway. I keep hearing this is the cancer you want if you’re going to have it because it gives you time. Well use that time for YOUR enjoyment. Life is really short.
Hobbies She Enjoys
Travel, reading, sewing, and spending time with my grandkids and family. ALSO, my job. I am an elementary school Librarian. It’s my retirement job after years of stressful technical recruiting. I love the energy these kids give me.
GISTLife Motto
“Life changes, embrace it. The only thing in life that never changes is the fact that life changes.”
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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