When I’ve described my treatment to people, there were certain parts of it that caused strong reactions. When I got to the part about the feeding tube, the reactions surprised me. I could tell it freaked people out. A few people started crying. It took a while to remember that I had reacted the same way when I was doing uninformed research, before I really understood the process and why some doctors recommend it.
People think of a feeding tube as something used in a hospital, a tube that goes down your nose sending some kind of clear nutrition from an IV. They think of it as something done when the future is grim, when patients are in a coma or frail and wasting away in bed. That’s not the kind of feeding tube used in this case.
It’s called a PEG tube, and I got mine yesterday. I went in for the procedure at 8 am, and was in the operating room by 9. They gave me sedation (Valium) through an IV so I would fall into a light sleep. Then they took an endoscopy camera (on a long flexible tube) down my throat to my stomach, used a bright light on the camera to locate the exact spot, and cut a tiny hole in my skin, through to the stomach. Once they had the hole, they put a stop on either side attached to the feeding tube (so it won’t just pull out). The whole thing took about 20 minutes.
I remember waking up during the procedure, but I remember it as fuzzy facts rather than how I actually felt. There was something in my mouth, holding it open, and I could feel them doing something to my stomach that hurt. I made a sound, I heard the doctor saying “Give her…” and then I was back out. I woke up with my new feeding tube taped to my stomach.
Dr. D mentioned that there was controversy over some parts of my treatment, and this was one of the biggest. Some doctors don’t believe in having PEG tubes inserted unless they’re needed. Everyone responds to the treatments differently, but every patient on chemo and radiation for head and neck cancer develops a very sore throat (like a bad sunburn, but inside) and a corresponding large amount of phlegm as your body works to heal the burns. Many patients also develop oral mucositis–open sores in the mouth and throat and on the tongue.
Some patients can continue to take enough nutrition by mouth despite all that, but most can’t. When I started doing more informed research, I read posts from many other head and neck cancer patients, and many of them said, “I wish I had listened to my doctor and had the PEG put in earlier.” It’s human nature to try to maintain a normal lifestyle amidst something as scary as a cancer diagnosis. They wanted to keep eating normally, and tried to keep doing that so long that they ended up critically undernourished and dehydrated. That not only made the PEG procedure much more difficult, but it also made their entire treatment and recovery period a lot rougher.
So when Dr. D said his opinion on the controversy was to recommend a PEG tube, I said yes right away. I think he was surprised–I would bet he usually has to really persuade people–but I told him I’d done the research and thought it was the right choice. It’s a low risk procedure, and definitely better done while I’m feeling well and healthy (well, healthy except for that pesky cancer). If I don’t need it, I won’t use it. If I do need it, I can use something like Ensure or homemade shakes because it’s the same as normal eating–it just bypasses the throat. Once I’m past the treatment and I can eat by mouth normally, it takes about 10 minutes to extract with no anesthesia.
I was in quite a bit of pain yesterday, but I think it was a combination of the PEG attachment being very tight, and the lingering gasses used to inflate my stomach. I knew from a previous surgery that those gasses can cause pain at the site but they can also wander up to your shoulders. Strange but definitely true: I had bad shoulder pains last night. This morning it’s all calmed down. I’m going to see the doctor at 9 so he can loosen the attachment, which should also help with the pain. I’ll be a little sore and I won’t be doing sit ups any time soon, but the insertion of the tube was a blip on the radar compared to the urgency of my treatment, and the difference it will make when I keep up my nutrition and hydration.
So get those pictures of people wasting away in bed on a feeding tube out of your mind. I’m walking around with a feeding tube right now, and you’d never know it if I hadn’t told you. It’s one step on the road to being cured!