My long week

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.


Is anyone still here? Can’t say as I’d blame you if you’d all given up on this blog, which has been rather, um, dormant recently.

I’ve asked Paul to write about his recent experiences with soup and other liquids, and another barium swallow test he had last week. I could write about them, but that would be second hand news, and he’ll do a better job of it. He keeps saying that, yes, he’s going to write about those things, but right now he’s really more interested in writing about politics than about swallowing. So, if you haven’t been over to Ratiocination recently, there’s a lot more going on over there than here. Obviously.

And, no, I’m not going to leave you completely in the dark about his progress on swallowing. Subjectively, it’s getting better, though slowly, and the barium swallow test confirmed that.

The most recent news on the swallowing front came yesterday, when we had a consultation with an acupuncturist near Houston. He thinks that acupuncture can really help to improve Paul’s swallowing. And, yes, I’m going to let Paul write more about that, too.

I’ve spent much of the day today playing with my nephews, and I’m ready for a nap. More later on our weekend in Houston.


There I was, about to use my trimmer to clean up my beard, when I realized that the face I was looking at in the mirror was surprisingly familiar. It looked symmetrical. There was a bit of a shadow beneath my jaw on the right-hand side, providing an important bit of visual relief. Yes, there is still swelling beneath that, but, in that moment, it looked like my normal face with a swollen thing on the neck.

Moving around, I see that it’s highly dependent on the angle of the light, and is invisible in many positions. But, if I hold my head just right, I look like Paul with a some kind of a bruise on his throat, instead of that guy who’s been around here since February.

It’s hard to describe how much this means to me. Yes, I know that I’ve been told by everyone who’s seen me how well I look, but I’ve been looking in the mirror. I have a reasonable ability to observe bilateral symmetry, and it’s been missing. And that has really bothered me, no matter what you all said. I’ve felt misshapen. I’ve been conscious of it when out in public, particularly at the checkout counter in stores. (That’s a double whammy, since I often have trouble speaking as clearly as I want in those situations as well.)

So today was another experience like the other night. A small change, that has been a long time coming, and which builds on all the small changes before it, has suddenly put me over an important threshold. The ability to swallow a small bowl of soup suddenly enabled me to really believe I will get to a future where I’m living on what I can eat. This bit of shadow allows me to finally picture a time when the only visual trace of my surgery when I look in the mirror is a relatively clean scar.

I’m not there yet, in either case. But I feel like I’m actually on my way there, which makes it easier to keep going on. I think I may have crossed out of Nebraska.


Soup update: I finished my batch of Paul’s Chicken and Stars, after several nights of having increasingly large portions. I’m up to a full cup. I also had the pleasure of adding some spices and seasoning to the broth. Much more experimentation will be required before I can tell if the surgery has altered my sense of taste much.

Last night I made some gingered carrot soup, using my new wand blender, which is quite wonderful for making soup. My first bowl of that will be tonight. I expect there will still have to be some work to figure out what consistency works best.

Are you sleeping?

Because our dads have asked, here is the piece I read in class last Tuesday. We were to write quick impressions of some remembered firsts: first scent, first pet, first teacher, first car. Then we were to write a scene about one of these things. I chose first song. A big caveat: what follows is not, in fact, one remembered morning from my childhood. This is not a scene that my parents or my sister will read and think, “Oh, yes, I remember that morning.” It is made up of bits and pieces of many mornings, many memories. There are also liberal dashes of speculation and imagination. However, the emotional quality of the scene is as I remember some mornings, and the song is one of the first two or three that I can remember.


I wake to muffled morning sounds from the kitchen: the pop of the percolator, a sizzling skillet, my parents’ quiet conversation. My sister, in the bed next to mine, rolls over; her kitty falls off the bed. I lie still, listening, waiting, for the soft footsteps that I know will come. My mother opens the door to our room; bringing with her the smells of coffee and bacon. She comes in quietly, singing: Are you sleeping? Are you sleeping? Brother John? Brother John? As she sings, she opens the curtains, letting in the morning light. Morning bells are ringing. Morning bells are ringing. Ding ding dong, Ding ding dong.

She sits on the edge of my bed, strokes my hair. Now comes the good part: Are you sleeping? Are you sleeping? Kimberly? Kimberly? I giggle, and wriggle further under the covers, eyes closed tightly. Morning bells are ringing Morning bells are ringing. I feel her leaning over me, her breath brushing my face. Ding ding dong. A kiss on one eyelid. Ding ding dong. A kiss on the other eyelid. I open my eyes; she is smiling at me. I smile back.

She moves to my little sister’s bed, and sings to her. For Melanie, the Ding ding dong involves nuzzling. When Mommy has finished the third verse, we are both sitting up in our beds, sleepy-eyed, dark hair tousled.

“Such pretty girls I have.” This is my father’s voice. He is leaning in the doorway. While he is talking about all of his girls, his smile is for my mother. He hugs and kisses Melanie, then pulls me close. He smells of aftershave. Even freshly shaven, he is slightly scratchy. I love the scent; I love the scratch.

Some time later, I will learn to play the song on the piano. My mother will teach me and my sister, all three of us together on the piano bench. We will play it together, then as a round, in three different octaves. She will also teach us the original French words: Frere Jacque, dormez vous? Sonnez les matines. Din dan don. It will be years before I realize that the words translate almost exactly, longer still before I notice, and am amused, that the bells make a slightly different sound in French than in English.

The English words, and the English bells, will always be my favorites.

More cause for happy dancing

Tonight, while we watched Joan of Arcadia, Paul ate another bowl of Chicken and Stars soup. This time he had about one cup – more than twice the size of the bowl he ate last night. Needless to say, eating it took him longer than last night; he finished the bowl of soup just about at the end of the show. However, as he often spends an hour putting 250 ml. of liquid in through the feeding tube, this wasn’t really any slower than his current rate of ingestion.

So now we’re plotting the preparation of fairly smooth, not too thick soups that have a calorie content approaching that of instant breakfast. Certainly cream soups might fit the bill, though we’re interested in finding a way to reduce the percentage of calories that Paul is getting from dairy products. Any suggestions?

Chicken and Stars

When I was a boy, my favorite soup was Campbell’s Chicken and Stars. I recall many difficult days when a warm bowl of this soup seemed to make things a little bit better. There was the salty, yellowish broth, seasoned with who knows what, and the little star-shaped noodles that could offer a variety of interesting effects for a smart little boy moving the spoon back and forth in the bowl. There was something special about Chicken and Stars. Chicken Noodle was good, but not quite as good. The broth was different, it seemed, and the long slurpy noodles had a different feel from the armies of little stars. Chicken and Vegetable was barely worth eating. It tended to have bits of nasty canned green beans, and bits of tomato that made the broth all yucky. No, without doubt, the best of all soups was Chicken and Stars.

So it was perhaps not surprising that tonight, as my first experiment in quite some time with eating soup, that I should choose chicken broth with little star-shaped pasta. It wasn’t Campbell’s – my system won’t bear the sodium in that anymore. And the star-shaped “pastina-150” just happened to be the smallest size pasta that I could find at my local supermarket. Small seemed best for this experiment. But I’d be lying if I said I wasn’t hoping for at least a little of the solace and healing I used to get from good old Chicken and Stars.

I first boiled some chicken broth. I used a mixture of low-sodium store-bought, and my own home-made, previously frozen. I figured it would taste better that way. Into this I dumped what seemed like an appropriate amount of pastina, from the cute little half-size box they came in. The Ronzoni label also brought me back to childhood. I can’t forget their slogan, “Ronzoni sono buoni”, which TV commercials firmly implanted in my brain. (It was years before I got enough Italian to translate this magical phrase as “Ronzoni is good.”)

So, the broth was different, and the Ronzoni pastina stars are much smaller than the ones Campbell’s used. These are the compromises we make in the interests of science. Perhaps I would still be able to summon at least part of the magic of Chicken and Stars. Maybe, just maybe, I’d be able to actually swallow this soup.

After a few minutes it was ready. I ladled out a small portion into one of the small Chinese soup bowls. I reached into the drawer for a demitasse spoon. Set a low bar, one small step at a time. Small portion, small spoonfuls. Don’t rush. Take your time. Pay attention, but relax.

First small spoonful. It’s warm. Taste is OK. Let the temperature wake up the swallowing nerves. The little stars float around, but I’ve regained enough sensation to be mostly aware of them. OK. Now. Try to swallow as best you can, calmly, without tensing up or breathing funny. Hey! It worked! Mostly. A couple of stars still in the mouth. A couple need to get cleared up from where they beached going down the throat. But no aspiration. And most of it went down the first time. Can I do it again? Maybe that was just a lucky shot. Second spoonful. Relax, just try to swallow normally, or what passes for normally these days. Hey! That worked again! And it felt pretty good.

“All right, don’t get cocky, kid,” says the voice of Han Solo in my head. I look at the rest of the soup in the bowl. Even this small portion will be quite a few spoonfuls. Pace yourself. It’s not a sprint. I cautiously bring small spoons, bare sips, up to my mouth, over and over. Still, no aspiration. Still, most of the stars go down the first time. Out of a couple dozen per spoon, maybe three or four get stuck, and are easily cleared, with a quiet noise I wouldn’t be too embarrassed to make in public. Slowly but surely, the level of remaining soup drops in the bowl.

I look across the table at Kimberly, who is having her dinner at the same time. “Look at me, I’m eating!” I say, hoping not to jinx it by calling attention to it. (As if she hasn’t been watching with rapt attention this whole time.)

Finally, I reach the bottom of the bowl. A very small amount remains, more than a spoonful, but not much more, I think. I bring the bowl to my lips, and tilt the remainder into my mouth. It’s more of a mouthful. UH-oh. I can’t control all of it. Some of it starts to go down when I accidentally breathe. Emergency. I dump the mouthful back into the bowl, and cough a few times. It’s OK, I got it mostly in time. I won’t be coughing for the next half-hour. I was just rushing, is all. Not ready to have so much in my mouth at once. Remember, small spoon.

Chastened, I finish the bowl by taking a few more trips with the demitasse spoon. But then… Look! I finished it all! That was maybe a quarter, maybe a third of a cup volume. And now it’s in ME! Yippee! One small, but emotionally very important step, and some critical progress. Soup. Real food. A reasonable person could go a long way with soups. You could live on it if you had to. A small shaft of light breaks through the darkness. Kimberly laughs as I do a funny little “happy dance.” I store the rest of the pot in the refrigerator, so that tomorrow I can have another bowl of Chicken and Stars.

Good old Chicken and Stars.

Writing class report #2

The second class was really interesting. Laura, our teacher, lectured for a while about narrative voice and structure, and the difference between the author and the narrator in memoir, and blah blah perspective blah… Or maybe I could just type up my class notes. Wouldn’t that be fun reading? Anyway, there was some lecture-type talking, and some questions posed and answered, and then we had the Break with Treats. I didn’t tell you about treats last week, or breaks either. Well, about halfway through the 3-hour class, we take a 15-minute break. And during the break, we have treats, brought by three folks from the class each week. It’s a little time to talk and raise our blood sugar (great for those of us who don’t manage dinner before the 6:30 start time).

After the break, each person read his/her first friend/teacher/pet/song piece aloud. While there was a range of writing quality, in terms of style, construction, etc., everyone was fairly good at evoking a particular moment from the past. Some were funny, heartbreaking, tender, or some combination of those. Facility with reading aloud was a highly variable factor. It was very clear that some people aren’t used to, or comfortable with, reading aloud.

Despite feeling my heart beating faster just before my turn, I’m accustomed to performing, both speaking and singing, and once I got the first sentence out, I realized that I had settled into performance mode, and was treating my writing as I would a script. I realized for the first time, in some gut level way, that I really do write in my own voice. Reading my own writing was comfortable; the sentence length and structure matched the way that I speak… at least those times when I speak in carefully composed, grammatically and syntactically correct sentences. I had written about one of the first songs I remember, Frere Jacque. I remember having learned it first in English, and I sang the English words where they occurred in the story. After I read the last line, there was complete silence for a moment, which is just what I want at the end of something sweet and quiet.

And my teacher liked my story. She said that the structure blah blah scenic quality blah blah blah voice blah blah very nicely done! Phew! More next week…

The first day of class

Tuesday night was the first meeting of the memoir writing class that I’m taking at UW Extension this quarter. I haven’t taken a real class since finishing architecture school 16 years ago. I’ve gone to continuing education seminars, and the occasional short workshop, but nothing on the scale of this full-quarter, 3-hours-each-Tuesday class. Given that I enjoy school, and learning with other people, it’s surprising to me that I’ve waited so long to do this.

Before I left for class, I was talking with Paul. I was excited and nervous, and he got right to the heart of the matter. “We forgot to get you new pencils! Do you have a new notebook?” I laughed. The first day jitters are still much the same for me as they were when I set off to school with thick pencils, a Big Chief tablet and a box of crayons. I’m clearly out of practice. I had not armed myself with pristine supplies – a new notebook in a favorite color, two or three of my favorite brand of fine-point felt pens. I grabbed a notebook from the stack on my desk; paused to locate a special purple ball point pen, and headed out into the damp Seattle evening.

As I drove to campus, the first-day questions came out of hiding: Will I like my teacher? Will she like me? Will I make friends? Will my writing be good enough? I buried them under more mundane concerns: where do I park? where is the building? the classroom? Not wanting to be late, I had given myself more than enough time to get to class. Not wanting to be early, and sit in a quiet room with a bunch of strangers for any longer than necessary, I spent the extra time reading flyers on the bulletin board in the hallway. I walked into class two minutes before its scheduled start time.

The teacher walked in right on time, shuffled some papers, called the roll. Right away, she was taking us back into our memories. “Roll call. Just like in second grade. If you have a nickname, tell me what it is. Can you picture your second grade teacher? How many of you can remember her name?” She told us a bit about herself, and her background as a writer and writing teacher. Then came the “why I’m here” portion of the class, during which each of us got to say something about ourselves, and what we’re writing, or want to write. I have told Paul’s and my story often enough in the past few months that I can talk about it easily; not so for some students in this class. An elegant woman my mother’s age spoke about never having written anything personal, then began to cry as she told us that her son had killed himself 18 months ago, and that she hoped to write her way to some peace about his death. Our teacher was across the room within moments, a packet of tissues in her outstretched hand. She was gentle but matter-of-fact in asking for a little more information, then moving on. “I can tell this class is going to get very personal very quickly,” were the first words out of the next woman’s mouth.

Indeed it will. Starting in a couple of weeks, we will be reading – and writing critiques of – one another’s writing. For next week, we are to write one page about one of our early memories: a song, a scent, a pet. We will read these aloud in class. (Reading aloud! More memories from second grade…) And we are each to write a one-page summary/outline/plan for the memoir that we imagine writing… and bring copies for everyone in the class. So, next Tuesday evening, I’ll receive 22 of these, from people who will not remain strangers for long.

Class was Tuesday; it’s now Friday. I have not yet bought the books for the class (Angela’s Ashes by Frank McCourt, and Maxine Hong Kingston’s The Woman Warrior). I have not yet started my assignments for this week. I have thought about them, but this is a writing class, so I’m supposed to, you know, actually write something. Now you have some idea of what I’ll be doing this weekend.

Paul’s new glasses

Paul picked up his new glasses on his birthday. Clearer vision and a stylish new look; these are fine things to have for one’s birthday. (If you can’t tell that the frames are red, click on the photo for an enlargement.)

Speaking of clearer vision, please take a couple of minutes to go read this little essay. This guy sure knows how to put words together well… not to mention ideas. As I was discussing with our friend Erin recently, this sort of intelligence is very sexy.


Today is Paul’s 45th birthday. I can’t begin to tell you how glad I am that he’s still here, and that I have him in my life. I’ll write more later today. In the meantime, why don’t you click on that comment link, and wish Paul a happy birthday… and many more.