It’s been a quiet week in Lake Woebegone…no, wait, that’s somebody else’s line.
In fact, it hasn’t been a very quiet week for me. It’s involved trips to the hospital, a plane trip, a fancy dinner out at a restaurant, and various adventures big and small.
Monday I went over to UWMC for the latest in a series of barium swallow exams. This one went much better than the last one, which I think was in July. We were able to try several different thicknesses of the horrible chalky barium-and-artificial-flavor products, including, for the first time, pudding! (Believe me, barium pudding is about as delicious as it sounds.) The radiologist, the trainee radiologist, and Marie, the speech pathologist, made various noises while watching my x-ray’d image swallow on the screen.
What was clear was that I hadn’t been lying to Marie when I’d told her that I had much more sensitivity and control than last time. Whereas last time I was often aspirating barium without sensing it before it was way down my windpipe, this time I was sensing it as it started to go the wrong way, and coughing, keeping myself out of danger. This, for Marie, was very important. It also eased her concerns about the fact that I’d confessed to eating nuts. She had obviously imagined me getting a cashew lodged in my windpipe and suffocating.
The bad news is that not all my parts are working properly yet. My epiglottis, which should flop over to a 45 degree down angle, is only flopping over to horizontal. Which mostly protects my windpipe, but doesn’t really allow much food down. The “stripping” muscles in my throat, which are supposed to peristaltically squeeze stuff down, are not moving. This, in part, is why my epiglottis isn’t going all the way over, since it appears the other muscles, toward the front of my throat, are working much better now that I’ve had some months of physical therapy. My dark fear is that my stripping muscles, having been previously zapped by radiation, have decided they are going to get all stiff and refuse to play anymore. But I’m trying to not give that fear much credence. More on that later.
Later in the week, I was back at UWMC for my last physical therapy appointment. It seems like we’d reached a point where we weren’t seeing much more improvement. We measured my range of motion in tilting my head side to side, turning right and left, and tilting back and forth. All my measurements have improved since I started, though I’m not completely balanced – I’m still tighter on the right side of my neck. But it seems like we’ve taken care of the adhesions, opened up some lymph channels, and restored a lot of motion.
Thursday morning way too early, Kimberly and I got on a plane for Houston, to attend the celebration of her father’s 70th birthday. This trip has been a source of high anxiety for me, since it’s the first trip I’ve taken since coming home from the hospital. My daily routine requires a lot of equipment and supplies, all of which I have nicely laid out and systematized at home. I spent a long time making sure I had everything I needed with me that I couldn’t easily find in Houston, but I wasn’t at all confident that I could actually make it all work “on the road.” Sure I could pack extra feeding bags, and my pump, and its charger, and its carry bag, and my pill pulverizer, and all my pills, and my syringe, etc., but what about the unknowns? Would my stomach tube leak in a pressurized cabin? How was I going to make sure I got enough feeding time when the schedule would be unusual and involved long periods of plane and car travel?
So far, it’s gone OK. There was a little water that seeped out of my tube. I had to stay up later than I wanted to get enough food one night, and yesterday my stomach had problems for some reason – weird water, different pill timing, strawberry-flavored instant breakfast instead of chocolate, who knows. It was better in the evening. I think I’ll be able to make it until I’m back home on Monday.
Friday night was a big birthday dinner with many friends and relatives, at a nice restaurant. Kimberly’s mother Barbara had nicely arranged for a special menu to be prepared for me, so that I’d at least have a chance of eating. As I was putting on my jacket and tie, I tried to keep thinking that the point of the evening was to be with people, and celebrate Tom’s birthday, and that the dinner was just an add-on feature. I’d do the best I could.
It was pretty hard. Thank goodness for the consideration in preparing a special menu, and for the kindness of Kimberly’s aunt Glennie, and Kimberly, who sat beside me and were very solicitous.
First, as people arrived and we all stood around chatting, we all got flutes of champagne. I very carefully sipped a few sips, each barely a taste, but swallowed without breathing any. I was having trouble speaking, because my saliva/swallowing balance had gone off again, and I felt like I was about to drool whenever I opened my mouth. This made my chatting and socializing a bit awkward.
Later, after we sat down to eat, I picked off extremely small fragments of soft pouch-steamed fish. It was delicious, and I tried to enjoy it. Each fragment would take careful mastication, and repeated swallowings. I struggled with being patient, and each time I would get too eager, I’d start a bout of coughing that would bring concerned attention from Glennie and Kimberly. While masticating, I admired the lovely presentations on the plates of others at the table, wonderful looking dishes that are completely beyond me. I attempted multiple sips of water, again minute, which I got down without inhaling. By the end of the evening, I’d probably lowered the level in the glass by a full 3/4 inch.
I’m very glad I got to be there, and I enjoyed the company, and hearing the various toasts, including a couple very moving ones from Kimberly and her sister. But being at a nice place, with fancy food and drink, really confronted me with how impaired I am, and how this activity I used to love is beyond me right now. I can’t really eat, or drink, and I just wanted to cry.
I would have been even more upset, if not for the activity that day. Kimberly and I drove to the small Texas town of Brenham, to consult with Master Thai, a Taiwanese accupuncturist. Melanie, Kimberly’s sister, knew of him and his good reputation, and had set up an appointment. I was intrigued by the waiting room, a storefont in a shopping mall, filled with “good ol’ boys” and ladies with lots of makeup and “done” hair, all waiting for this Chinese man to stick them with needles. It seemed odd when I thought back to when Nixon went to China, and acupuncture was strange and oriental. Several of the people waiting looked like Master Thai probably also treated their horses, a sideline to his practice that is, in fact, how Melanie came in contact with him.
Master Thai was apparently educated in Western medicine in Taiwan, as well as acupuncture, but rather than wade through the requirements for medical licensing in this country, is now Master, not Doctor, Thai. This made me feel confident, that, as I described my medical history to him, he understood what I was talking about. My final question: what, if anything, did he think acupuncture might offer me to help with my swallowing?
The answer is, quite a lot, though it would take 20 or so treatments, preferably daily. So obviously he wasn’t going to do it, though we could find someone in Seattle who could. He described what he thought was happening, and how it was treatable with acupuncture. His description of a throat that had clenched tight because of the surgery, and which needed to be able to open and shut normally to swallow, seemed to jive with the “stripping” action that was missing on the barium study. I’m very excited.
I’m sure we will, with some work, be able to find a good acupuncturist in Seattle. It is heartening to think that there might be some “handle” to influence my healing, since Marie and the Western establishment have nothing to offer besides “keep trying, and we’ll see if you get better.” If there might be a way to coax my throat muscles and nerves back into action, sign me up. I’m more than ready. And the possibility that I might be able to swallow again in a month or two really helped me make it through the dinner that evening. It’s a lot easier to think, well, I can’t eat that lovely, delicious meal now, but maybe soon, than to think, I don’t know if I’ll be able to eat such a thing ever again.
Last night I had another opportunity to go out to dinner with the family. This time was more casual. Kimberly suggested I could get a milkshake, which is what I did. I found that I couldn’t manage the straw, since I’m still struggling with the mouth control needed for sucking. But I managed with a spoon, and through the course of the evening ate more than half. I can’t say I didn’t long for the stuff other people were eating, but it was a pretty tasty, chocolate milkshake, and I didn’t have to work as hard to swallow it as I did the food the night before. I was happy to get so much down with only one big coughing fit. It meant I was tied with my 1-year-old nephew across the table, though he’s mostly able to handle a sippy cup, and small pieces of cake, so I think he’s still ahead of me overall.
Tomorrow we fly back to Seattle. I should be able to get in a couple hundred calories of juice before we leave, if I start early. Once we’re back, I’m planning on going to get a flu shot. More on that adventure in another post.