A sore throat, mashed potatoes, and a mud run: my experience with a PEG tube

I have two speeds: go and go faster. As a district manager for Cook Medical’s Endoscopy division, I’m traveling for work almost every week. Six days a week you can find me WODing in my box (that means “workout of the day” or what non-CrossFitters would call going to the gym). Fast and furious is how I move through this thing called life.

Until the summer of 2013, that is. Off and on for about a year, I was bothered by a sore throat. But, being me, I just ignored it, expecting it to go away. When I mentioned it casually to some of the GI physicians (gastroenterologists) that I work with, they suggested I get scoped, even offering to do it themselves. But I did not want to bother with it.

That summer, I was on vacation with my family. With some consistent urging from my wife, I decided to visit an ENT (ear, nose, and throat doctor) to get my chronic sore throat checked out. We made an appointment for September.

I’ll never forget it. My appointment was on a Friday. The physician did his exam, which included a scope of my throat and asking questions about my soreness. He finally told me that there was a mass in my throat, causing the soreness, and it needed to be removed Monday through a microlaryngoscopy. I said, “I’ll do the procedure, but can it wait a few more days?” I had an upcoming CrossFit competition that I didn’t want to miss. “It can’t,” he said.

In for a surprise

The next few months were the most surreal and challenging of my life. I couldn’t figure out how this would fit into my fast and furious life. The Monday procedure confirmed that the mass in my throat was cancerous. A base-of-tongue squamous cell carcinoma, to be exact. My physician told me that I would be starting chemotherapy, radiation, and that they would have to put a percutaneous endoscopic gastrostomy (PEG) tube in, as I would likely lose the ability to swallow. I’d have to be fed through the tube in my stomach.

Now, swallowing is not something we typically think of as an “ability.” It’s natural, we all do it from the time we’re born. And no eating? I’m Mexican – we eat, and we eat big! And right before the holidays, too. I told the doctor I didn’t think the PEG tube was necessary. There was no way I could forget how to swallow.

He insisted, and I’m glad he did. After the microlaryngoscopy, chemotherapy, and radiation, I indeed lost my ability to swallow. I was fed completely through my PEG tube for approximately 6 months. No chewing, no tasting, and certainly no swallowing. I lost 60 pounds. I even lost my ability to speak normally for about 30 days.

Forced to slow down

My PEG tube was cumbersome. It was painful, as the tract had never had time to fully heal around the tube due to my active lifestyle (I was still in the gym as often as I could be, until the chemo and radiation made it impossible). I taped it out of the way, but still felt uncomfortable out in public without a good way to conceal it. Eventually, I convinced my doctors to switch to a low-profile PEG tube, which greatly increased my comfort level.

My condition caused me to slow down and take a breath. I was forced to relax and heal, simply because I was too weak to do anything else. I ended up watching more TV than I was used to, and the commercials for food drove me crazy. A McDonald’s McRib sandwich sounded heavenly.

Through 6 long months of recovery, including speech and swallow therapy, I slowly recovered the ability to swallow. I started slow with water and protein shakes, eventually moving on to soft foods like Jell-O, oatmeal, and mashed potatoes. Mashed potatoes were the first “real” food I could manage. I bought tubs of it from Kentucky Fried Chicken, Popeye’s, and anywhere else that sold them. They were delicious.

Motivated by mud

My first real workout after treatment was a bit unconventional. I signed up for a “mud run,” calling my doctor beforehand to check if it was safe for my feeding tube to be exposed to mud. He strongly indicated that it was not good to get the tube muddy, so I stocked up on waterproof bandages, covered the tube, and did it anyway. It was challenging, but one of the more rewarding experiences of my life.

Feeling blessed

Cancer is not something that anyone plans for. I certainly had an attitude of “That could never happen to me.” But it can, and it did. I was blessed for a lot of reasons. One, my disease wasn’t any worse. Two, I had a loving family who supported me through everything. Three, my employer was generous and patient, giving me all the time I needed to recover before coming back to work. And last, but in no way least, my feeding tube sustained me when my body was unable to do it.

Today, I’m cancer-free. I’m PEG-tube-free. My last scans came back clear of any sign of cancer, although I’ll have to continue with follow-up care for the next five years. I’m back in the gym five days a week (and working toward adding back day 6) and I’ve gained back 10 pounds. I can eat almost anything. And I have a new appreciation for my fast and furious life and, of course, for food.

Mauricio Carrillo has been a district manager for Cook Medical’s Endoscopy division for 10 years. He lives in Texas with his family.