It Might Get Messy

Had to travel to Atlanta for an overnighter. FedX’d 5 cans of food and a couple of bottles of Instant Breakfast to the hotel. That got me through two days of meetings. At Hartsfield coming back, I got a full body scan at security. They got 9 hits on my torso. So they pulled me out to pat me down. I told the guy I had a feeding tube and a blood port and started to show him the tube. He said “No, no, don’t take it out. Is it gonna hurt you when I pat you down? Don’t let me hurt you.” I assured him I would survive the pat-down. But the poor guy was so shook up by then that he did a crappy job patting me down. I could have had a set of vice grips and a ball peen hammer in my pockets and he wouldn’t have found them.


I got back Wednesday evening. Thursday I went to the hospital for rehab. Therapists Bethany and Jessica worked with me on improving my speech (although I got through two days of meetings relatively coherently) and strength. Then we went to check out how my throat infrastructure is doing in relation to the swallowing process.


Jessica numbed my nostrils with lidocaine, and slipped a scope in through my sinuses. Meanwhile, Bethany died a bunch of foods and drinks green so they’d contrast in color images. Then we went to work watching me swallow.

Let me orient you to the above photo. If you are standing on the screen surface looking in, that cave heading back straight away from you is my airway. The structure deep in the back there is the top part of my vocal cords. At your feet, in this view, falling away down from your toes, is my esophagus. The swollen blobby pink thing running across the bottom of the photo is what’s left of my epiglottis. The radiation turned it into a dysfunctional, clumsy mass.

As you can see in this photo. The greenish goop is some dyed applesauce. In a normally-functioning throat, the epiglottis would rise into place to block the airway so the food would be swallowed down the esophagus. Here, the airway is open, and a big blob of applesauce is dripping its way ominously toward my bronchi. 

Which you can also see in this photo. This time it’s a thin liquid I’ve ingested—green-dyed water, I think. Most of it is bubbling down behind my tongue into my esophagus. But the airway is still open back there. My epiglottis is not inverting to do its job.

But, the human body is pretty smart. This photo shows what my throat is doing to substitute for the dysfunctional epiglottis. That ring in the back there is part of my vocal cord structure and upper airway contracting to shrink the entrance and so help to keep goop from entering my trachea, and instead have it pour down my esophagus right in front of you there behind my tongue. This substitute system, combined with my still partially paralyzed tongue, remains unable to deal with solids, or anything more challenging than thickish liquids (which I can pretty much pour right down my open esophagus, since I don’t have to swallow to move my epiglottis out of the way). But, with constant work on tongue rehab and swallowing exercises, I should get to where I can meet my daily calorie ration without pouring stuff through the tube directly into my gut. 


From stuff I’ve read, it can take up to 3 years for this full substitution effect to operate effectively. I don’t have that kind of time. Now that I’m back at work, traveling is a necessity. And in May, I’m going to Germany. I want to be off the tube by then. I don’t want to be wandering around central Berlin looking for a Wal-Mart where I can buy liquid medical food. I may not be able to handle currywurst (long skinny curried sausages served on the street in hotdog buns). But I’ll be damned if I won’t be able to survive on soup, syrup, and ice cream. Germany, here we come!