Trusting My Gut

- Blurry vision, dry mouth, and type 2 diabetes led to diagnosis
- FOLFIRINOX followed by a Whipple
- I wrote a book about my journey
My diagnosis began with blurry vision, followed by a two-week period of dry mouth.
These aren’t typical indicators of pancreatic cancer, but I had a “gut feeling” that something wasn’t right.
The Link Between Diabetes and Pancreatic Cancer
A blood test revealed I had a glucose level of 529 (the normal range is 70-99) and A1C of 13% (normal is below 5.7%). These tests indicated that I was prediabetic or had developed diabetes already. One month later I started losing a lot of weight without dieting.
A blood test confirmed that I have type 2 diabetes, followed by a CT scan, which showed atrophy of the pancreas. A team of doctors evaluated my scan, and an MRI was recommended. From that, they spotted a small tumor in the head of my pancreas; an endoscopic exam verified a cancerous tumor. I was diagnosed with stage I pancreatic adenocarcinoma in July 2024.
A Straightforward Treatment Plan
I decided to travel from my home in Rhode Island to Boston, Massachusetts, for treatment, which is only an hour away—to me there was no choice. My primary care doctor had a relationship with Dr. John Yang at Mass General, so I had my scan sent there. Even though Dr. Yang didn’t start out being my doctor, he and his team (Dr. Ted Hong, a world-famous radiologist now at Beth Israel Deaconess Medical Center, and Dr. Motaz Qadan, my surgeon) reviewed my CT scan, which was not definitive, and recommended an MRI. They all consulted with each other, even though I was not their patient. That was pretty incredible. They obviously became my team and I was so fortunate, so lucky to have found them.
The treatment plan was straightforward: eight cycles of FOLFIRINOX, followed by 28 days of radiation therapy, followed by the Whipple procedure with Dr. Qadan. The main side effects I had were nausea and neuropathy in my fingers and toes.
My cancer and its treatment have impacted me both physically and psychologically. Despite the fact that I am more than one-year post-Whipple, we have had to tweak my enzymes, and I am now back on insulin. I am now feeling almost like my “before” normal self despite physical changes (hair texture, loss of weight, etc.).
Not Your Typical Diabetic
I am grateful to be alive despite the side effects from the treatments. For example, I have rather specific issues related to the Whipple procedure. I have learned the lesson well of trusting my “gut”, so I now have a specialized endocrinologist who is helping me oversee my glucose issues. This, to me, is greatly important. I am not a typical type 2 diabetic and should not be treated as one. For instance, I advocated to be tested for an enzyme deficiency and I have ongoing difficulties managing my diabetes and this deficiency.
It was a frustrating experience to find an endocrinologist who would understand my specific needs. I started out researching in Rhode Island (particularly through Brown Health). However, I was quite persistent and began to research endocrinologists outside of Rhode Island. Again, I was incredibly fortunate to find Dr. Aaron Nelson at Mass General, who has experience with my specific issues. He also put me in touch with a pharmacist (also at Mass General) who figured out what I should do. Together, they developed a plan that seems to be working.
All of my research really helped me understand the reasoning behind the treatments. There are things that occurred, particularly when I was hospitalized, that I think others need to be made aware of. So, I wrote it all down.
My Book Tells My Full Story
In addition to completing my treatment, I have also just published a book, Status: Warrior Woman. Lessons Learned from a Pancreatic Cancer Survivor. I wrote this book to help others—including patients and caregivers—understand treatments, nutrition issues, the Whipple procedure, and to learn effective coping skills. It is important to me to help others cope with this difficult diagnosis.
In my book I stress three major things: accept (the diagnosis), instill humor in your life, and be positive and optimistic. I also share the many lessons I learned throughout my journey, but these three were the most important things that got me through this difficult treatment protocol.