One of the best things that happened to me during radiation was getting my feeding tube put in. It sounds ridiculous, I know. But, as it turns out, throat tissues don’t enjoy being irradiated, and one way they show their displeasure is by filling up the throat with gunk. It’s a kind of sticky, smelly, yellow-green mucous and is the most disgusting thing I’ve ever had in my mouth. It was there for five months. Also, there is swelling in the throat, as well as sores that develop everywhere the radiation touches. Not surprisingly, I stopped being able to swallow.
It happened gradually–there were fewer and fewer things that I could get down. Eventually it was only cereal softened with milk and ice cream sandwiches. We didn’t really realize how little I was eating. The doctor, however, was not impressed by my meager meal recital and recommended a feeding tube. I had previously sworn that I would not need such a thing, and did not want such a thing, but the situation had changed. It had become exactly as bad as they’d told me it would be. I just hadn’t wanted to believe it.
So I had the tube placed, and we looked around for a nice vegan formula, which we were lucky to find (it was not a good time to be a vegetarian and allergic to dairy). I learned to hook up the formula bags, and to use syringes to input liquids, and to keep everything clean. And quite suddenly, I started to feel better. Turns out calories are a necessary thing for life. Who knew? But a lot of the fatigue I had attributed to the radiation treatment turned out to be the byproducts of under-eating.
So I loved my tube. It wasn’t entirely comfortable to tool around with a tube hanging from your belly, but I never had problems with it clogging up or dislodging. It is a remarkable thing to feel hungry, hook up a bag of formula, and then lie there in bed watching Murdoch Mysteries and after a while realize you are no longer hungry. I could eat while working on my husband’s computer without getting griping from him about spilling my lunch on his keyboard. With my hands free during meals, I could multi-task like never before.
I did have to learn to sleep on my back. But that was coming anyway, as I started to have more trouble breathing around the gunk in my throat. So that wasn’t really the tube’s fault. And I had to learn to grind up my pain pills and mix them with water in order to put them through the tube, but we soon worked out a system for that. (It involved putting a piece of paper on the bottom of a mortar & pestle unit, then lifting the pill powder with the paper. Otherwise, the ground pills were impossible to get out of the mortar.)
But there was one thing about the tube that was devastating to me, and I don’t exaggerate. Imagine this: You have a sore throat. You are on pain meds, but this is a kind of sore throat that is hard to describe. It’s systemic–you don’t just experience it as pain, it also steals through your whole body and pulls the energy right out of you. It’s just so hard to exist with this kind of pain. It invades your waking and sleeping time, like a beeping alarm that you can’t turn off. You can distract yourself, but in a moment of relaxation, you hear that alarm again. You feel the pain when you talk, when you breathe, when your throat tries reflexively, desperately, to swallow all the stuff that’s in it.
Now imagine that you can’t drink anything. Everything that you take in for sustenance is liquid, but you can’t drink it. Anytime I had to put something through my tube, it started and ended with water. I would fill a glass with water and then pour it into a syringe, and it would flow through the tube and into my stomach. I would stand there with this glass in my hand, full of beautiful, clear water. I would get drops of it on my fingers. And then I would watch it pour away, down the tube, without the ability to put a drop of it in my mouth. I was sometimes nearly in tears being so close to water and unable to cool my throat.
I had the tube removed after five months, which was four months past the end of radiation. I am now the proud owner of two navels (you may scoff, but I work in child care, and children are deeply awed by the sight of a second belly button). While I am now able to swallow again, my “new normal” as far as eating goes is vastly different from what it was. I have had some permanent mouth and throat changes that keep things interesting. But probably the thing that affects my life the most is that because of the radiation, I no longer have saliva.
Not having saliva is a problem for eating. It makes it hard to swallow things, and some things are so dry that I can’t swallow them even with the help of water. But it is also uncomfortable. It’s not really painful, but when you’ve been without liquid in your mouth for a few minutes, you start to experience a few unpleasant things. First, your lips stick to your teeth. Then your tongue starts to stick to the top of your mouth. Finally, it honestly feels like the sides of your throat stick to each other, kind of like the back of your leg to a vinyl armchair. So, uncomfortable, yes. I have tried various solutions, and what works best for me is to just carry water with me everywhere. This has led to some adventures, when I have managed to get myself into a situation that doesn’t allow for my water bottle. For example, during a historical house tour, I dashed outside to eat snow. (I now sneak in a small container of water to museums and other places where it’s not allowed, and when the tour guide is not looking, I take a drink.) Once at a water park, in a really long line, I borrowed my daughter’s swim mask, filled it with water, and drank it–chlorine, sunscreen, and all. Like I said, not having saliva is uncomfortable.
So you might think I’d be kind of miffed that I ended up this way, unable to function without constantly having water with me. (The world is my desert, as we say in my family.) And I am kind of miffed, yes. Who wouldn’t be? But, as I write this now, I am sitting at my kitchen table, and right beside me is a glass of water. It’s the same glass that I used to fill with water to pour into the feeding tube. I fill it at the same sink, with the same tap water. So am I upset that I have to carry this glass around with me? In truth, I am elated. I am overjoyed. Because now I actually get to drink it! Anytime I want a drink of water, I can have one. I can get up in the middle of the night and drink from the bottle that I keep by my bed. I can drink from the little bottle that I carry with me when I run. I can drink in the car, in the animal shelter, at church. This is starting to sound like a Dr. Seuss book, but you get the idea. Am I upset that I have to drink water? No. I am beyond grateful that I am able to drink water. And that is something beautiful that cancer has given me: the ability to love my new normal in all its imperfection.