Day 26 - Tube Talk

Good morning boys and girls, today we're going to talk about tube feeding: the process, the procedure, the equipment. But first, a message from our sponsor, NoBeard. NoBeard removes those whiskers from your face, thus rendering your face naked and apparently making you look about ten years younger. Don't take our word for it...see for yourself!

Before using NoBeard

After using NoBeard

But why, Joe? Why shave your face like that? Well, chemo is almost certainly going to take my hair (long hair pulled back and up in my pic - it's still there!), all of it. Like...all. Head, face, armpits, even nose hairs...and so, shaving my face was my way of physically preparing for the inevitable. Kind of like a proactive approach that takes away one of the fronts of fallout. I'm waiting on my hair. Waiting until the first sign of attack before I raze the village. Apparently the hair falling out because of chemo hurts, and the longer it is, the more painful it is. Plus, I don't want patchy clumps...once it begins, I'll shave it off. Sigh.

I know I've mentioned tube feeding several times, but you may be wondering how it works. Well, wonder no more! The mystery is about to be revealed. The first step is to gather what I need: a carton of Kate Farms fantastic formula (fantastic snarkily added by me), a container of water, a hand towel or paper napkin, and a wide medical syringe that holds about 60ml of water. Then, I have to get the tube ready. In order to keep it safe, and out of the way, so that I can maneuver and do things without ripping it out of my body, I wear a cool band around my stomach that was designed for feeding tubes. It's like a hidden holster for feeding tubes - keeps it safe and secure. But I have to get the tube out of the "holster" and ready for feeding.

Once that's done, I pull up a full syringe of water, open the cap at the end of the tube, and screw the syringe on to the threaded end of the tube. Doesn't stuff come out when you open the end of the tube!? No. There's a clamp down near the base of the tube that pinches the tube closed. Once the syringe is threaded on, I open the clamp and slowly plunge the water into the tube and...into my stomach. Ah, a refreshing glass of water! I usually do two syringes of water (having to clamp the tube closed first before I unthread the syringe) for extra hydration.

Then it's time for the main course. The plunger is removed from the syringe, leaving just the main body of the syringe. I thread that back on, shake up the formula, and then pour it in. Open the clamp and the formula begins to go down the tube, gravity fed. In order to consume a full carton, I have to fill the syringe about four and a half times. I can control how fast or slow it goes in by how high or low I hold the syringe. However, doing it too quickly makes me sick to my stomach. While this is happening, I usually read, or play around on my phone, or watch a show with Jess. It only takes one hand to hold the syringe. It does get tiring and so I often switch hands. Once the last of the formula is done, I clamp the tube, unscrew the container, get a full syringe of water, and plunge the tube with it. Start with water, end with water (it flushes the tube clear and clean and also gives me more water). Then I have to get the tube put back into the band and situated. This whole process takes about an hour. I do it four times a day.

There's also a packet of protein that I take via the tube once a day. It's a thickish, amber kind of goop that gets mixed with 30ml of water and injected via the tube. So, that's how it works. Jess and I have gotten pretty good at it. We can do it anywhere. I've done feedings in the car even - as long as we have fresh water with us.

Remember, the whole reason I have a tube feed is because my esophagus is almost completely closed. Even liquids can sometimes be a problem to swallow. Even water. My nutrition is entirely via the tube. Jess and I were talking about things last night and I made a joke about not even being able to drink water and she said I had to turn it into a comic. So, here it is, the comic rendition of my sad state of struggling to drink water (I should probably add that it's a LOTR reference, so if you've never seen The Lord of the Rings, you might not get the humor):

Jess tells me that I should make an ongoing comic strip about cancer, or my experience with cancer. Maybe I will. I need a title though. Any ideas?

- j