Surviving Life with a Feeding Tube

My husband was diagnosed with squamous cell carcinoma of unknown origin in August of 2008. He underwent chemo therapy and radiation. The treatment period was hard, but he managed to make it through with the aid of a stomach tube. Luckily, he did agree to the stomach tube early in the treatment plan and in the end, it kept him alive for three years and beyond. Without going in to all of the details of why he was unable to swallow, it is enough to say that he made it through that period of time with pure grit and a lot of faith.

This story of survival is about how he coped with living with a stomach tube. Dave was an Infantry Officer in the Vietnam war. He knew that he was cured of the cancer as soon as the treatment was finished. He made it through that battle. But still, living with a stomach tube was depressing, especially so because we didn’t know why he was having difficulty swallowing.

As life would have it, an event occurred two weeks after he was finished with treatment, that forced Dave into accepting that the tube was now necessary to keep him alive and this was now his “new normal” way of life. The first event was the death of a newborn grandson, ten hours away by car. The dilemma became, did he want to stay at home in a respite situation, or did he want to support our son and his family in this horrible time. Dave got in the car with the suction machine and plenty of formula, and pain meds and off we went.

After this, another son was commissioned in the California National Guard. This was a big deal to Dave and meant flying to California with a stomach tube and all his food. This was our first adventure with the TSA, determining the safety of the formula packages and handling feedings at layovers in the family rest rooms. This became the first of many cross-country air travel trips. We got really good at finding clean family restrooms, in order to “feed” Dave, getting the formula through the TSA inspection, as well as being “patted” down because we were carrying the small containers. We could tell you which airports followed procedures and which ones didn’t. We were very careful to carry enough “food” with us, but we also got very good at getting formula when the extra formula, in our luggage, didn’t arrive in time. We could do feedings, anytime, anywhere, and it became an adventure to see what would happen that we hadn’t thought of yet.

Dave was now retired and coping with this “new normal” and the newness of not going to work. This new identity was hard to deal with. At one point, I said, “now what, we’re retired, are we going to sit around and look at each other or are we going to do something for us?” By chance I came across a blog of a woman with a feeding tube who traveled to Europe. Her adventure wasn’t any different than ours in the United States. Now there was no excuse to keep living and as a friend from Germany told me, she was pretty sure that people had feeding tubes in Europe. Again, no excuses.

But as life always does, we never got to find out how we would handle an overseas trip. The cause of Dave’s inability to swallow was identified and fixed. The tube was gone. No more adventures with the TSA, and the “New” normal became the old normal. And Dave has lived happily ever after.