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 June is Jodi Bachand.
Jodi, Vermont, USA.
My GISTory
My story started in October 2020 when I went to the Emergency Room in Burlington, VT with COVID symptoms. While I didn’t have COVID, I was diagnosed with Stage IV GIST, Exon 11, high risk cancer. I had a 9-inch tumor in stomach and a 4-inch tumor which metastasized on my liver. I was confused and shocked when they told me, but my initial reaction was to fight with all my being because I have so much to live for.
My journey had started. I started chemo (imatinib) because we had to shrink the tumors before we could remove them.
By May of 2021, the tumor in my stomach had shrunk enough for my first surgery where they removed the tumor along with 50% of my stomach, my spleen, and 30% of my left diaphragm.
I went home to recover because my second surgery was in September 2021 where they removed the cancer, 40% of my liver, my gallbladder, and a portion of my right diagram. This recovery was harder, and I struggled even more.
I ended up with an internal bleed in November 2021. My doctors in Vermont took me off treatment, told me to go home and get my affairs in order. They didn’t know what else to do with me because they only had a hand full of GIST patients in Vermont and mine was the most severe.
I went for a second opinion at Dana-Farber (Boston) in February 2022, which saved my life. My disease is manageable but incurable. My treatment is focused on controlling symptoms and prolonging life. I still take a Chemo pill every day and go to Dana-Farber every three months for scans, treatments, labs and meeting with my medical team. I will do this indefinitely.
How I cope with GIST
First and foremost, I am very faith-based and put my journey in God’s hands. I allow myself to feel all of the emotions associated with my disease. I try to be optimistic. I trust my medical team. I engage in activities that bring me happiness, such as spending time with family and friends, listening to music, dancing and spending time with my husband and loyal dog, Clover. And I pray a lot.
My advice to fellow GISTers
I love this question because I wish I had a fellow GISTer to get advice from. Resources in Vermont with regard to GIST cancer were nil. I struggled to find answers or just get advice. So, I wrote a book for the next GIST patient in Vermont (or wherever) who might need a little direction and inspiration. My book, Jodi’s Journey: Living with Cancer, is a compilation of journal entries I made the first 18 months of my battle with GIST. My book gives a glimpse of what my journey looked like. I wanted to write a sequel, but it’s a lot of work writing and publishing a book, so I started a podcast with two friends, Kind Hearts, Strong Souls, where we continue to talk about our journey. We are currently recording Season 2. My advice is to utilize these two resources!
Hobbies I enjoy
I love to crochet! I make sweaters, blankets, hats, scarves, and I like to upcycle clothing with crochet items.
My #GISTLife Motto
“We are living our ‘someday’ today” (You know how people say “someday I’m going to go to travel, or someday I’m going to retire”).
Learn more about the LRG Patient Registry!
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
