For as long as I can remember, eating has made me uncomfortable. I often felt best when a skipped a meal or two. Maybe a food allergy? Although I never delved further because it just seemed like it was normal. A gastroenterologist considered IBS and other things, but tests ruled those out, so nothing was ever done. But it wasn’t a total shock when an incidental finding on a CT scan showed a tumor on my pancreas on February 22, 2021. I had never heard of pancreatic neuroendocrine tumors (NETs), but once I was diagnosed I spoke with some of my doctor friends but avoided Dr. Google because I just decided I needed to trust the surgeon.
I’m 75 years of age living in Long Island, and I was immediately referred to NYU for an endoscopy. When I woke up I learned that the endoscopist had already made an appointment for me with a surgeon, and within a few days, I had been introduced to NETs and was preparing for surgery. The biggest aggravation was having to get a Covid test before each procedure but within a month I was having my Whipple. Thankfully the preliminary indications showed that the tumor had not spread. But I did lose half of my pancreas and the associated organs.
One stroke of luck was that I had my surgery in late March and that enabled me to start walking outside. A few halting steps built to a few miles and every non-rainy morning since then I have walked with friends in the local park or at the beach. This continuous walking has made a big difference.
Although looking back since the surgery I can see myself getting stronger and more comfortable (most of the time) diet and bowels have been and remain a challenge; the unpredictability and restrictions have made socializing difficult although I do go out and I have been getting exercise since the surgery. My friends have been understanding and even restaurants have been willing to try and accommodate my weird restrictions. Right now my diet is in progress. I keep as low fat/oil as possible and avoid fiber and sugar. I do not take enzyme pills so I try to be careful. I currently live on rice and hummus.
Something I’m looking forward to is traveling again. Before I retired I ran a product development area for a major software company which sort of retired at the same time I did. I’ve had the opportunity to do interesting business travel in lots of places, and Sheila (my wife) and I traveled a few times a year for fun (North Africa, Ecuador, Peru, Europe, China). We were scheduled to go to Turkey immediately after I retired, and then to Nepal; both trips were canceled on us due to the pandemic. With traveling, I know I’ll just have to watch my diet. Pancreatic cancer sucks, but we look forward to getting away again as soon as possible.
In many ways, the biggest problem has been the lack of a real, personal support network as my wife and I feel very much alone. I assume it will remain or get worse over time, but I am persevering. We have found some organizations such as the National Cancer Foundation and Net Cancer Awareness (NCAN) by some lucky online searching and we are looking forward to when Covid restrictions enable us to meet others with similar issues in a personal setting.