As a part of our Faces of Courage series, we are featuring a patient or caregiver story each month. Each one of our members has a unique story to tell, but they all reflect the intrinsic courage of those who face the challenges of cancer head on, with dignity, strength, and passion for life.
Our Caregiver of the Month for June is Sherry Codner. Here is her story:
GISTory
Sherry & Mark Codner, Oklahoma, USA
In February 2017, my husband Mark went to the emergency room with intense abdominal pain and a GIST was found within a huge blood clot. The surgeon who removed the GIST told us it was benign and there was nothing more that needed to be done.
Mark experienced intermittent abdominal pains thereafter and saw several doctors who could not find the source. After reading that GISTs could return, we requested a cat scan in April of 2020, but it showed no irregularities. In December 2020, not even eight months after that CAT scan, Mark was back in the emergency room where he was found to have multiple tumors. Several days later a biopsy revealed GIST and he was finally referred to an oncologist – this was our first indication that GIST was cancer.
The oncologist had very little information and was frustrated trying to explain why they were still referring to the GIST as benign, but at the same time malignant. Had I not poured myself into GIST research we would never have known its complexity and the importance of mutational testing, among other things. After several months of confusion, we sought a new oncologist who was more GIST-aware, and she immediately ordered mutational testing from the December biopsy. We now know his GIST is exon 11. The relief we felt from initially being told Mark had a benign tumor has changed, but we remain faithful that we are now on the correct path to managing his GISTs.
Coping With a Loved One’s GIST Diagnosis
I feel immense guilt from allowing the relief of Mark’s initial “benign” diagnosis stopping me from doing the research I should have. Now I do two things – I lean on my creator for comfort and I seek GIST knowledge. I read, take notes, print and organize information and do my best to keep our family informed about what I’ve learned. My goal is to make sure my husband gets the very best care we can find and to remain knowledgeable enough to know if there’s something else we should be doing.
Advice for Fellow GIST Caregivers
Being a caregiver is a learning experience and I’m sure it’s different across relationships. I think it’s very important to educate yourself – doctors are only human and their knowledge is not infinite, even in their specialty. If you have a doctor who is unwilling to learn or listen, find a new one. Also, be aware of your loved one’s feelings, behavior and activity – I keep my husband in a positive mindset, which also helps me; I listen to him and offer comfort, or suggestions when he needs them; I keep life as normal as possible but I try to maintain a balance of being watchful that he doesn’t do too much physically that could hurt him while remaining mindful not to smother him.
Hobbies We Enjoy
Mark and I enjoy spending time in our back yard listening to music and admiring the beauty of our surroundings. We love watching our three energetic grandchildren play and grow. We hope that soon Mark will be able to return to playing golf and fishing.
Motto
I do my best to live by The Golden Rule. As a human, I sometimes fail but I do my best to smile at people I don’t know hoping to brighten their day, to forgive frustrating transgressions that we all experience when others are too busy to be aware, and to speak to others with kindness and respect.
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.
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 Sahibjeet Kaur, LRG Patient Registry Supervisor, for more information: skaur@liferaftgroup.org
