Nourishing the Body and Soul

Neuroendocrine cancer has many ways it can knock us out of our comfort zone, and so we may spend a lot of time trying to hold onto our usual way of living. In some ways it is an extra job. The constant change in our diagnosis can remind us of how little we have control over. Learning to lean in and make changes was easier for our family and more enjoyable!

One really important area that can be tricky is nutrition and eating. For those living with neuroendocrine cancer, one person’s diet may not work well for another person. There are some issues that, as a community, we will likely deal with, like diarrhea or malabsorption. There are also many variables that make everyone’s needs different.

My husband Jim’s point of pride was our vegetable garden! Every year, he would have our boys help him tend to the soil, plant the seeds, and water the garden. He would watch for the carrots, tomatoes, zucchini, corn, etc. to pop up out of the ground like magic. He grew enough vegetables to feed a small country. Our neighbors would see him coming with his buckets of vegetables and welcome the bounty with open arms. (Some probably cried on the inside wondering what to do with 10 pounds of tomatoes!)

We have always been a family of traditions. Family dinner at 6:00pm every single night and on Sundays we had brunch together under the pepper tree in the backyard. We loved to go to restaurants; we celebrated around a meal. Someone graduated kindergarten or got a new job: Let’s have tacos!

After Jimmy’s initial diagnosis of neuroendocrine cancer, we were all in on making every nutrient count! We got a juicer and began juicing veggies and fruits for him. We upped our salads and added more vegetables to our diet. If it came from the ground or a tree, we were going to make sure Jimmy had it!

Little did we know that nuts and raw vegetables were creating issues for Jimmy. He went in for a colonoscopy and the doctor said he had to stop the test due to a large tumor blocking Jim’s colon. He told Jimmy to stop eating raw vegetables, nuts, and meats because they are hard for the body to process. I felt terrible because all I wanted was for his diet to boost his health, not hurt him!

After Jimmy healed from his initial surgery, we met with a Registered Dietitian who helped us tremendously. We were fortunate enough to be receiving treatment in New Orleans and we scheduled a meeting with Leigh Anne Burns, RD. Leigh Anne taught us how to make food healthy and easier for Jimmy’s body to process. When Jimmy’s diet had to change, so did our family’s diet. We all adapted to the changes.

Over the course of many years, Jimmy’s health and diet took many twists and turns. After many trips to the ER for a nasogastric (NG) tube to help with blockages, we learned even more dietary changes were needed. We did what we needed to. Jim loved lasagna and salads and BBQ, but eventually they were completely off the table. Eventually Jimmy needed to be on Total Parenteral Nutrition (IV nutrition and hydration). This is not typical for every neuroendocrine patient and when it does happen, for many people it can be temporary while their body heals after surgery. For Jimmy, this was his new, permanent way of life. A backpack held the liquid nutrients that kept him going. There were also a lot of other things to go with it: saline syringes and alcohol pads, tubes, and a PICC line. We also had to follow a schedule for when to start the bag, when to sleep and even how to work around it.

This was another setback to our dinnertime, which was once our best time of the day. It was so hard to enjoy meals when Jimmy couldn’t enjoy food anymore. The traditions as a family that we celebrated with favorite foods and gatherings came to a sudden stop. This was only temporary until Jim realized this wasn’t good for anyone and found a way to enjoy food in a different mindset. He understood more than ever how important food and nutrients were. He decided to start cooking for us! Suddenly, he was making us his favorite foods or whatever he was craving. With no warning, we would have enough sauteed zucchini and squash to last us a year. We would come home to homemade salsa with the tomatoes he grew with so much love. We would go camping and he would be hooked up to an IV Pole for his hydration bag while cooking more food than we could possibly eat. We would find him barbecuing a tri-tip steak big enough to feed the neighborhood!

My adult children and I just discussed this over the weekend. It was hilarious to remember how much food Jimmy would make. We knew that the neighbors were also waiting for that familiar knock on their doors to find Jimmy with these concoctions for them. We laugh about it now. He would not take no for an answer! Oprah gave cars away and Jimmy gave baskets of vegetables and food! “You get zucchini and bread, and you get zucchini and bread!”

Recently, I asked our two sons, Gradon and Kyle, how all the dietary changes in our home affected them. Over the course of 14 years, they saw our food routines change quite a lot. They know what they like and what they don’t. They understand that it is important to pay attention to what you are eating and make the meals count. They both are big “foodies,” who enjoy a good restaurant. One is an amazing chef in his spare time, and one knows every good restaurant in Los Angeles and enjoys trying new things. They say it has a lot to do with their dad.

I was so afraid the worry and the changes in meals were going to have a negative impact on our family, but Jimmy didn’t let that happen. He still found joy around food. It was in the grocery store shopping and the big meals he made for his friends on their annual camping trip to the desert. It was calling his TPN “Steak and Eggs.” The fact of the matter is, as Jimmy said every single day, “If your feet touch the ground today, it is a good day to have a good day.”

Whether you are the caregiver or the person living with neuroendocrine cancer, paying attention to nutritional needs and asking for guidance will increase quality of life. Good food, good company and feeling your best is good medicine. Here is to your health and your journey being the best it can be.