Paul’s Ten Things plus

In the blogosphere there are ideas for posts, equivalent in some ways to writing exercises, that have come to be called “memes”. (I’ll skip the details about the origins of the idea behind the word “meme” and why using it for this seems slightly inaccurate. Maybe some other time.) Anyway, one blogger will suggest a topic, and post about it, and encourage others to create their own versions.

One that’s making the rounds is called “Ten things that I’ve done that you probably haven’t.” Because I’ve done some unusual things, and because occasionally reminding myself of that bolsters my spirits, I decided I’d take a crack at it. Though once I got started, it was hard to stop. Here are my ten, and ten more for good measure.

1. I’ve survived cancer – twice.

2. I’ve heard the low bass note of sand sliding down a 600-foot tall dune, while cavorting naked on it in the moonlight.

3. I’ve hand-milked a herd of dairy cows before breakfast, and studied Enlightenment philosophy after breakfast.

4. I have kayaked through clouds of shrimp, at the foot of volcanoes.

5. I’ve watched a friend’s last breath.

6. I’ve had my heart shocked back into beating.

7. I’ve worked at, and held shares in, a company during its record-breaking IPO.

8. I’ve crossed the Continental Divide 5 times on a bicycle.

9. I’ve slaughtered a steer by hand, and later eaten its beef.

10. I’ve been stung by a scorpion.

11. I’ve eaten rattlesnake.

12. I was born as the twelfth generation of my family in North America.

13. I’ve been in 48 of 50 states.

14. I’ve cooked Thanksgiving dinner on an open fire.

15. I’ve been in a neighborhood hit by a tornado, during my Christmas vacation.

16. I have surgical scars on every limb, my torso and my head, and I carry more than 5 metal screws and 2 metal plates in my body.

17. I’ve taken coast-to-coast trips on four different modes of transportation.

18. I’ve played in a game on the world’s largest Monopoly board.

19. I’ve gone miles through a foreign land just to see deer antlers that are locked up in a church.

20. I’ve adjusted Caroline Kennedy’s bicycle seat.

The Party

The party on Sunday was fun. The house was full of people, ranging in age from baby to senior, and that’s not even counting those here in spirit. It was heart-warming to have so many people come over to celebrate with us. We had people from various parts of our lives, and it was fun to see them all in the house at the same time.

Kimberly prepared three delicious chocolate treats, using recipes from Maida Hetter. Chocolate cookies, brownies and mousse. For some reason, there were no left-overs. Imagine that. (I guess people had missed lunch or something.)

Luckily, Kimberly had prepared a second batch of the cookies, which were waiting in the freezer so she could bake them for her writing class on Tuesday. This has enabled me to avoid withdrawal symptoms as the smell of chocolate has faded from the house.

We were both so busy visiting and hosting that I don’t think we took any pictures. I know I didn’t. Our friend Paul Bestock, who I think may never be without his camera, was taking shots. But he uses film, so I can’t just download them and post them. You’ll have to use your imagination if you weren’t here.

Picture a house with a couple dozen interesting and caring people of all ages, hepped up on chocolate and good conversations, with a gaggle of small children running around. It was quite festive and busy. No wonder Sergei the cat found himself such a good hiding space that for a while we were worried he’d gotten out of the house. Even the lure of his favorite catsitter Auntie Lynne, shaking his favorite rattling toy mouse, could not coax him into view. Lyra, on the other hand, was working the room, sponging petting whereever she could find it, and cheerfully sitting on the arm of the chair next to the cat-allergic Dave. (They can always tell.) Later, after Dave had left, she contented herself with letting children pet her, which is quite a step for the previously quite skittish Lyra.

It was really touching to see so many great people, and feel their affection and support. Several were a complete surprise, in that I didn’t know they were planning on coming. That was great. It was a nice boost to see so many people so happy to see me looking well. It was a good reminder that, even if I don’t yet feel as well as I would like, that I really am doing pretty well, and I’ve come a long way. The last time some of these people saw me I was in a hospital bed! Remembering those visits really brought home what a lot I’ve been through. And my eyes weren’t the only ones getting a little moist thinking about that.

So, thanks everybody for coming, either physically or via vibe-o-sphere. It was a good party, and much, much nicer than Feb. 27th last year.

Things about my new life that suck

Throwing up in 10 seconds the lunch I just spent an hour carefully chewing and monotonously washing down my throat, just because a moment’s inattention afterwards caused a sip of water to go the wrong way and start me coughing and gagging. Having to clean the clogged drain in the sink afterwards.

Modern Tranquilizers

I had a rough day today. I was digging into some heavy, tearful stuff at my therapist appointment, and stirring around in all that stuff left me feeling unsettled for the rest of the day. This evening, Kimberly was away at class, and so I’m alone, feeling both fragile and tense.

I had a warm, choclatey IBP, which helped a little. There’s a lot to be said for the soothing properties of warm milk. I retreated to the bedroom, and changed into some comfortable clothes, and tried reading. Not the thing. Writing? I grabbed my laptop and opened a text file, which I proceeded to fill with not very coherent lines. It wasn’t working. What to do?

Hey, I thought, how about some music? I recently copied the contents of various CDs from my collection onto my computer, using the Apple iTunes music program. A few clicks, and I was still typing incoherent lines, but I was also listening to music.

But thinking about music, and CDs, and iTunes reminded me that I’d thought about trying to make a “playlist” for the party on Sunday. iTunes enables you to create and play lists of songs you have stored, becoming your own DJ. And while I’m sure every self-respecting person between 13 and 25 has done this, it’ll be a new creative outlet for yours truly.

But the list I’ve been imagining for days involves some music I don’t have, either on CD or computer. And that’s where I abandoned mangling prose, and stepped into the absorbing, and oddly soothing, world of modern media.

I took a few steps over to my home office, where I plugged in my Airport Express, a stylish white box a little larger than a pack of cigarettes that happens to be a no-fuss wireless router. As it wakes up, it sets up a wireless network throughout the house. Back in the bedroom, I tell the laptop to turn on its wireless functions. It automatically logs me into the network, happily displaying signal strength in the menu bar at the top of the screen.

Leaning back against the pillows in the bed, I click back over to the iTunes program where I’ve been playing music. I choose Music Store from the list on the left, and poof! I’m connected online to Apple’s own Music Store. Their home page features a bewildering assortment of new albums from musicians I’ve either never heard of, or recognize in the group “young pop stars I’ll never listen to.”

But that doesn’t matter. For reasons I’m not altogether clear on, I’ve been hankering to hear the 60s hit “I Say A Little Prayer For You.” So I type that phrase into the search box at the top of the window, and up pops a long list of all the different recordings of that song, by various artists on various albums. I learn that it’s been covered by everyone from Michael Bolton to Wes Montgomery, but also on the list are the classic Dionne Warwick version, and several by composer Burt Bachrach. But the best part is that I can double-click on each one and hear a 30-second sample, seamlessly streamed in real-time.

Which means that I can, and do, spend quite a while clicking on different versions, and hearing differing interpretations of the song. Along the way, I encounter musicians I’ve never heard of. If I like their sample, I can click on a button next to their name, and go to a page showing their albums. If I want, I can click on a button next to the name of their album, and go to a page displaying that album in detail, with its own list of songs for me to try out.

So, I end up wandering around, discovering artists that are new to me, and hearing a bit of what they do. And each page has links to other artists and albums. My only analogous experience is when I used to wander around record stores, but tonight I’m lounging in bed in my pajamas, and there’s an instant connection between the “Oh, what does that sound like?” and the answer, and the interconnections between albums and artists are all displayed in a way they never are in real-world stores. It’s pretty fun. It’s audio window shopping at its finest.

What makes it worthwhile for Apple to provide this experience is simple. Next to every song is a button that lets me buy it for 99 cents. Buying means it’s downloaded into my iTunes library on my computer, immediately.

Eventually I wander back to my list of versions of “I Say a Little Prayer.” There’s a EuroPop dance mix version attracts just because it’s funny that it exists, it isn’t all that good, actually. I end up deciding the Dionne Warwick version burned into my childhood memory is still the one I prefer. I pause a moment, then click.

Seconds later, I’m listening to the whole song, which in digital version sounds better than what I used to hear over the transistor radio from WABC in New York, even though it’s coming out of the two tiny 1-inch speakers in my iBook. Speakers are much better now, and there’s no static. Who knew there was tonal richness in that recording? Huh. And stereo separation. Nice.

I could get used to this, I think. It’s more comfortable and faster than a store, but the selection is better in the music I like, and I don’t have to listen to the adolescent clerk’s favorite new band while I shop.

So I type another song into the search box. A whole brand new list of versions. More wandering and sampling. In the end, I decide the best is the one I already have on a CD out in the car. But along the way, I discover a few iMixes. These are playlists other users have created, and uploaded, with their comments, for public view. Friends share these with each other, I guess, but Apple also will pop links to some on your screen, if they feature the song you’re looking for. Which means you get to see what other people think fits nicely with it, and compare your ideas for a playlist with theirs.

My mind takes note, recognizes a tremendous time-suck when it sees one, and backs away slowly. Maybe some other time.

But, by the time this is over, I find myself feeling better. I’ve been drawn into a thoroughly distracting and entertaining world long enough to relax. I’ve had fun, and heard lots of music. It was easy, cheap and free of possible interactions with my other medications. Not bad. Not bad at all.

The New Workout

My original physical fitness training plan had been to start with what seemed a low activity target, and spend January practicing regularity and commitment. This seemed like the best way to remind my body what exercise was all about, and convince it that I was serious, so it should start adapting to a higher output. Anxious about doing too much too soon, as I have so often, I resolved that I would keep the same routine for the entire month, walking on the treadmill.

My intention had been, now that it’s February and I am noticing some improvement in my capacity, to increase the difficulty. I hadn’t quite decided whether I would increase the speed of the treadmill, increase the amount of time per session, or add some incline. And, while I may yet do one of these, my attention has been drawn to a whole new workout routine.

Yesterday I met with Katy, a speech therapist at UWMC. It was a very productive meeting, which is good because we’ve been trying to make it happen for months now. We talked about why I had come in, which had somehow gotten lost in the bureaucratic shuffle that had previously eaten several entire requests for appointments. I told her that, although my speech is intelligible, its quality varies, and my difficulty in control varies also. Since I hope to make a living by talking to people for hours a day, I want more.

Katy looked me over, shining a light in my mouth and having me make various movements of my cheeks and tongue, and make different sounds. We then sat down to discuss my situation. Her sense of things, which maps on to what I have observed, is that the right side of my tongue is tighter and weaker than the left. Not only does this mean that my tongue curves right when I stick it out, but it means that, when that side gets tired, I have more problems speaking. A similar problem affects the cheek on that side, which is numb and not moving as well as the left. What to do? Exercises, both for stretching and strengthening.

I now have several pages of exercises to do each day. These are a whole workout regime for my face and tongue. Some are “making faces:” rounding the lips, smiling, puffing up the cheeks, pushing the air back and forth between the cheeks. Others are “mirror exercises:” trying to get my tongue to push out straight, or pushing against a Q-tip while moving my tongue from one side to the other. Then there are “making sounds:” repeating certain sounds and words that emphasize the movements I’m weak on. These include “lucky lady, “”a little later,” “lie down”, and the “la la la la,” “lee lee lee lee,” “lu lu lu lu” triplets. (I have already started doing these last to the tune of the opening notes of the song “25 or 6 to 4” by Chicago. This is what comes of growing up in the 60s.)

Not that my reconstructed, partially numb tongue will ever work as well as my original equipment. Katy advised me to learn to slow down, and practice pausing, which will accommodate the fact that my parts move more slowly and awkwardly than before. Here I thought about my friend Becca, the fastest talker I know, and how hard that would be for her. It’s true that my gang of brainy friends tends to speak fast, though I thought I was already at the slow, pause-y end of that spectrum. Prepare for me to sound even more deliberative and sagely than before.

We also discussed ways to adjust my coaching schedule to compensate. I could schedule longer appointments, for example. She suggested that I avoid scheduling back-to-back sessions, so that my mouth would have time to rest. Another suggestion was to maybe do more in email. That, and using instant messaging, had already occurred to me, but it was good to be reminded.

But right now, my interest is in developing what I have. It’s frustrating that it’s taken this long to get these exercises. It seems like I could have started them much sooner, easily six months ago. Just another example of the way hand-offs between specialties don’t work very well at UWMC, I’m afraid. But at least I now have something I can do. Now I need to figure out how long it takes to go through this whole set of exercises and how to build it into my daily routine. I figure some of them I can do while on the treadmill, like walking and chewing gum at the same time. I can still do that!

One Year Later: The Adventure Continues…

It seems hard to believe it’s been a year since I created this blog. And yet, when I think about all that has happened since, it’s hard to believe it’s only been a year.

I created this as a means to quickly and easily keep my family and friends up-to-date on rapidly-changing news about my health. I had no idea that it would turn into what it has, or that my audience would grow to include people who now know me far better than I know them. For all of you who read this, thank you. Thank you for your support, kind thoughts, and kind words, both then and now. I hope none of you have interpreted my recent absence here as a sign that I don’t appreciate you, or care about you. It’s not that.

I also hope that none of you have interpreted it to mean that “it’s all over”. Because it’s not that, either.

When I started this blog, I had a cancerous tumor in my mouth and no idea what was going to happen. One year on, I have a piece of my forearm in my mouth, and no idea what is going to happen.

Which is by way of saying that, though the immediately life-threatening aspects of my situation have changed for the better, I’m still engaged in coping with the effects of the cancer.

Fundamentally, none of us knows what is going to happen. But living in our society, and participating in Western Civilization requires us to wrap that fundamental uncertainty in a probabilistic cloth of illusion. We don’t know that we’ll be here tomorrow, or six months from now, or a year from now, but we probably will be. So we behave as if we will be, and that cloth of illusion becomes such a part of our daily lives that we don’t really notice it anymore.

But, having had that cloth ripped away, it’s harder to wrap your world up in it again. It takes a long time for your heart to start trusting in probability again. There’s a tendency to look over your shoulder, to start at sudden noises. It’s hard to commit to things, to make long-term plans. Heck, to make short-term ones, even. You feel unsettled, off-balance, as if you’re always walking on tip-toes. Maybe if you don’t make too much noise, that other shoe won’t drop.

Eventually, if you’re lucky, and the months go by, and the scans keep coming back negative, and memory begins to fade, you get tired of walking on tip-toes. It takes a lot of effort, and, as time goes by, you accumulate enough data points that the old probability argument begins to sound reasonable again. And you start to relax.

Not that you can ever really forget. Sure, you wrap things back up with that cloth of illusion, but it never fits the same. You keep seeing through it at the oddest times, like when the simple beauty of a sunny day reduces you to tears of joy, or when you’re able to keep calm in situations that would overwhelm other people. Or, years later, when you have an odd pain, and though it feels like a sore muscle, and you were working pretty hard in the garden, you try-not-to-worry until it’s better.

The first time I played this game, I made a rookie mistake. What did I know? I was in my twenties, and really wanted to go back, to believe that I could pick up the pieces of my shattered life, and put it all back together again, like it had been before. So I tried it, and I did a really good job, and the night I picked up the last piece, I made the mistake of trusting it. I let my guard down. Boy, that felt good.

The next day I discovered the lump that meant my lymphoma had recurred.

(Riiiip! There it was, torn right away again.)

After that, it took me a while to begin to get the cloth back into place, and there was really something “off” about it, like one of those store-bought slipcovers that never fits perfectly.

On the other hand, life frequently does go on, and what’s the point of being there if you don’t play. You start with acting “as if”, even though you know the truth, and that’s how you get drawn back in. Because the thing about probability and statistics that makes so much possible is that, almost all the time, in this game, betting “as if” works. And it allows us to keep our sanity, stay out of the monastery, and avoid chemical anesthetics.

Which is all a long-winded way of saying that I’ve had the cloth ripped away quite rudely a couple more times in the last few years, and that’s not easy. I hadn’t really finished processing the whole heart-failure thing when ol’ S. M. showed up. Now it’s doubly hard to ignore that sensation at the back of my neck that something else is about to happen. (I guess it’s no surprise that I don’t go to those haunted-house movies. I’m carrying my own soundtrack, complete with eerie violin section and ominous cellos.)

I dreamt last night that my left forearm was being bitten by small dogs that were chasing me up a hill randomly spotted with thorn bushes. (Attentive readers will remember that my left forearm is where they “harvested” muscle to repair my tongue, now home to “the paramecium.”)

Maybe we should start talking about how I am physically.

Well, the aforementioned paramecium is approximately the same color as the rest of my arm, now, though the skin there is lumpy, oddly-wrinkled in places, and shiny. That arm is much weaker than the other, and I feel a sharp pain when it bears weight in certain ways. I’ve started to lift some small hand weights to build it up. I can notice a small “trough” or depression in the flesh, where they removed a blood vessel and muscle, but it’s not obvious.

The site on my thigh which donated the skin for the paramecium has the same texture as the rest of my thigh, though it is an obviously different shade. Given the way it’s changing, I can imagine it might not be obvious in a year or two.

My face has returned mostly to normal, though there remains a small puffiness just below my jaw. This may eventually go away, or I may just have to get used to the fact that my lymph drainage in that part of my body is messed up permanently. It annoys me, but it doesn’t make me worry about scaring small children.

My mouth function is…well, I don’t know. It changes, and I’m still learning about it, and it’s complicated. My lower lip doesn’t work like it used to, and my tongue doesn’t either. I would be doomed in L.A., because I can no longer make kissy sounds, as in air kisses. Every so often, as I try to work on this, I make a reasonable kiss by accident, but I can’t reproduce it. (Kimberly seems to be willing to accept my non-sound-effect kisses, which are different.)

I also have trouble sucking things, like through a straw. There’s a motion that my numb tongue and cheek used to do that they aren’t anymore, or something.

More annoyingly, I sometimes drool, because I can’t feel my lip enough to keep it properly closed, or properly tight against a cup or glass. This is particularly true when I’m sleeping. To be honest, I find this deeply humiliating, particularly when someone else is around.

Inside my mouth, there are areas where I have no feeling. Occassionally, food or a pill will get pushed into one of these places, and I have no idea where it is, or even that it’s still there. This has led to some surprises. My tongue extends reasonably well, but it curls off to the right side. The right side doesn’t bend or flex as well as the original equipment, either, which is one of the many complications in my swallowing. Sometimes, it feels particularly stiff, and speech gets difficult. Otherwise, tongue movement seems OK.

Swallowing has become more commonplace, but it still is limited, and requires attention. It is easy for something to start toward my airway if I’m in the wrong position, or I tilt my head, or I drink too much at once, and the result is lots of coughing. Bending over can be a problem, even when I’m not actively working on eating. There may be some “pooling” in my throat that persists and sloshes the wrong way when I move, and my stomach and esophagus are altered, so that stuff can also get pushed up.

While I’m swallowing a greater variety of foods, there is still a big dependence on being able to “wash them down.” My ability to start and move stuff down by muscle action is still impaired. I particularly noticed this at my last session with Dr. Lu, where I was lying face-down. My mouth quickly filled with saliva which wasn’t going down my throat. I was, after various attempts, able to figure out a way to swallow it, but it was quite difficult and hard to reproduce.

Now that I’m eating more different things, I’m realizing that I will have to relearn chewing, once I’ve regained the ability to swallow larger bits of more solid food. So far, I’ve been only eating stuff in nibbles, and never filling my mouth enough to put food into the “blank zone.” Occassionally, I’ve taken in enough to realize that manipulating food in my mouth is going to be quite different, from trying to avoid biting the right side of my tongue on up.

Finally, something (lips? swallowing? shape of mouth cavity?) got changed, so that when I sleep, I end up breathing through my mouth, and I wake up each morning with a completely dry mouth. I don’t know why. I hate it. It bugs me every day, but I may not have ever mentioned it, because, well, there’s a long list of those things.

Well, talking about how I am physically didn’t really cheer this up too much. Sorry about that. I promised myself that, for this anniversary post, I’d try to be really honest. And, in the interest of documenting the process, I’ve written about things I haven’t been talking about much, not that I’ve been writing about much here lately.

I hope this doesn’t come across as bleak to you as it seems to me. For all the challenges, my life is way better than it was a couple months ago. And, while I’m struggling with all of the above, I am beginning to move forward again, in big and little ways. We finally found a skeleton key to buy that works with our 1908 doors, so now we finally have a locking bathroom! Talk about swank! And I’ve been doing a treadmill workout Mondays, Wednesdays and Fridays all year so far, with light weights for my arms on the off days. I’ve been cooking soups for myself, and I even gained a couple pounds lately. (I guess that means I can cut back on the sour cream on the baked potatoes.) That’s all good.

So, what’s all of this mean? It means I’m still in transition. The diagnosis that led to the start of this blog set in motion a chain of events, and a series of changes, that are still in progress. It was unexpected and unwanted, but there you go. Life is not as scary as it was when I started this blog, but it is certainly more complicated than it was before the tumor. There is still a lot that needs to be worked out. We’re not done, though we’ve come a long way.

I’m thinking that I’m about ready to start writing more again, so there will be more to read here. It is definitely not time to shut this thing down.

Thanks for reading.

Organizing and Eating

A long time ago, before the Squamous Monster showed up, I had an idea that I was going to take care of all the old filing around the house. I set up a card table in the corner of my office, so that I would have some room to spread papers out as I sorted them. It was intended to spend a couple of weeks in my office, and then, having served its purpose, return to its spot in the basement.

Yeah, well. You can guess how that worked out. Over the last year, that table has become a depository for random papers, books, and other items that didn’t really have a place of their own, and didn’t really deserve much attention, given what else was going on. Lately, I’ve been back “above water” enough that the pile of chaos on that table has been able to bother me.

I’m happy to say that table is now gone. Over the past couple weeks I’ve made multiple assaults on it, and yesterday I was able to completely clear it, fold it up, and move it out of the office. And while, as is often the case, that process has left a few ripples of disorder in other parts of the house, overall there has been a lot of progress.

This is just one of the 2005 organization projects that we’ve been tackling, as an expression of my desire to feel good about this year, and exert control over things I’ve been far too preoccupied to worry about. Also on the ‘completed’ list are the cabinet in the bathroom, the big cabinet at the top of the stairs where we keep towels and medicine, and the area off the kitchen where we store all sorts of things from plastic containers to infrequently-used appliances. I’m pretty happy with the way I’ve been keeping up my intention to get these taken care of.

I’m also pretty happy with my commitment to exercise. For January, I’ve set the goal of doing a treadmill workout every other day, and I have been doing it. I’ve been consciously fighting my desire to do more, faster. I want to just see how my body responds to this level of activity. It’s felt pretty good so far, and this morning as I walked into Dr. Lu’s office, I was noticing that I was feeling better. But it appears my caution may have been wise, since after this afternoon’s treadmill session, I’m feeling wiped out. We’ll see how I feel tomorrow after a good night’s sleep. I’ll have all day tomorrow to recover.

Today on the menu: some potato chips, chicken noodle soup, and split pea soup. The last was the easiest. Potato chips are best one at a time, and it helps to wash them down with sips of water. The chicken noodle soup was work, but with lots of chewing, noise and sips of water, I got most of it down. It didn’t really feel like “eating” in the normal sense, but I did start with a full bowl, and end with an empty one, which is what counts, at this point.

Tomorrow I’ll have some more potatoes, I think.

I’m a lot better at swallowing pills now, and the other day I took one while sitting with other people in the living room, and nobody noticed what I was doing! My drinking is much more controlled, so I end up coughing less often. I was thinking this evening that I might soon try another shot at carbonated beverages. Yeah, I’m getting cocky now. Hoo-ya.

Human Pincushion says "Good-bye, 2004!"

The ten month anniversary of my surgery was Monday. I had a CT scan and my last 2004 appointment with Dr. Futran on Thursday. The good news is that my scan looks fine, and his examination of me showed I was doing well. The bad news is what I had to go through to get this news.

We were at the hospital early in the morning. I was supposed to get a blood test, then the CT scan, then see Dr. Futran. When they sat me down for the blood draw, I asked if it would be possible for them to put in something that would work for the CT people to inject their contrast dye. I really didn’t want to get stuck twice. This sent the phlebotomist off to find her supervisor, with whom I got to discuss it. Apparently they are not allowed to do such a thing, and besides, they don’t have the necessary equipment in that department, which I gather is just about drawing blood samples. He gave me the option of going down to CT, and having them draw the blood, which apparently they can do. But he suggested that the blood test results would be needed before the scan, so I’d have to wait longer if I did that. I thought about it, then let them stick me. They used a very small needle, and got it the first time.

Later, down in CT-land, they laid me on a gurney to insert the gizmo for injecting the contrast. I went through my usual explanation about how bad my blood vessels are, after tons of chemotherapy, so he was forewarned. He was very careful, and took a long time looking at, and rejecting vessels before he found one he wanted to try. Sadly, while he could hit it, and get the gizmo’s narrow catheter in part way, it wouldn’t go far enough. (Having one “blow out” when they inject the dye is, shall we say, very unpleasant. I speak from experience.) He tried delicately wiggling to slide the thing along, but the inside of that vessel was too scarred from caustic chemical abuse. He finally gave up, apologized, and went looking for another site.

To make a long story short, he never succeeded. We had a couple more “almosts” and a couple dry holes, before he went off to call for reinforcements. He was extremely and sincerely apologetic, which helped a little, but not enough. I waited for a few minutes, sitting up, clutching my arm close to me, both to ease the pain and to keep it warm, so my vessels wouldn’t contract more. I cursed myself out for not having pumped myself full of fluids the night before. Then the nurse showed up.

She also took a while looking and rejecting possible sites. Finally she found one she was willing to try. It didn’t work. Another “almost”. She then went back to looking. She had me take off my shoe to look at my foot. Nothing interesting there. She went for one on the opposite wrist from the first attempt. Nope. Finally, a spot on my shoulder. Foiled again. “Three is my limit,” she said, promising not to stick me again, and going off to talk to the doctors.

She returned with the word from the radiologist that they could get 90% of the information they needed without the contrast, and his permission to go ahead and scan me without. I was relieved, so much so that it wasn’t until later that it occurred to me that, if they could get 90% without contrast, why hadn’t they done that in the first place?

So, a total of 9 needle sticks on the day, some with the associated wiggling, twisting and digging around that always leaves a bruise. A no-contrast CT that Futran says “looks pretty good for shooting with no contrast.” We’ll get the formal read from the radiologist next week, but Futran thought there was nothing to worry about.

Just for fun, since I’d already been abused and rendered emotionally vulnerable, I got the extra thrill of having Futran use the fiber optic scope to look at the back of my mouth. This is the one they stick through your nose which bends around in back, after they spritz you up the nostril with the bitter tasting anesthetic. (You know, that one.) Hey, I thought, what’s more discomfort? My day’s already ruined.

At least his view of the back of the flap showed it looking very nice. He seemed proud of his handiwork, and the way I had healed up.

So, after we’d rattled his cage to get us the referral for speech therapy that we were supposed to get last time, but didn’t, we got to go home. I go back for another followup, sans CT, in 3 months, and another CT in 6. I intend to discuss the idea of ordering a no-contrast CT at that point. (And if we can’t safely do that, because we really, really need that extra 10%, then I’ll guzzle as many fluids as I can the day before, and have a really salty meal before bed.)

Compared to all that, my later acupuncture appointment with Dr. Lu was painless and very soothing.

The morning at the hospital has been the worst thing about the run-up to New Year’s. I’ve been quite energetic, and doing little ritualistic activities to flush out the bad year and be open to the new. I’ve been sorting through my wardrobe, washing bedding, and re-organizing closets and cabinets. It has been nice to toss left-over remnants of my early post-hospital time in the trash! And taking care of the rat’s-nests and chores that piled up has been really fun. Yes, figuring out why the drawer in my desk wasn’t opening all the way did require taking the thing half apart, but I finally figured it out, and fixed it, so now it opens more than 3 inches.

I’m excited to be in 2005. 2004 was memorable, in a very bad way. I’m hoping we can make this year memorable in a very good way.

Another Furlongstone

I feel silly referring to this as a milestone, since it seems like such a small thing, but it is still pretty meaningful to me.

This morning I’ve been able to get down all my pills by mouth. I did chop the largest tablet into quarters, but I was able to get down the next largest tablets whole. They are circular, 9mm in diameter and 5mm thick at their widest point. I swallowed them individually, but both of them went down smoothly, carried by a big swallow of fluid. I am inordinately happy about this.

In addition to meaning that I can actually swallow something so big and hard, it also means that, potentially, I can do away with my pill-crusher. If I can continue to swallow pills like this, then I won’t have to keep doing the tedious process of pulverizing the pills. Since the mild charm of feeling like a medieval apothecary wore off long ago, crushing my pills and mixing them into liquids merely remains as a regular, annoying reminder of how “broken” my body is after the surgery. Oddly enough, being able to take pills feels like a sign of health to me. (How’s that for ironic?)

My pill-swallowing attempts over the last few days have been trending toward success, but there have been a few awkward moments, as when a pill that had refused to go down started to dissolve in my mouth. But the other night I bragged to Kimberly that it seemed like I could feel some of the little throat muscles doing their job, and actually grabbing smaller pills and pushing them down my throat.

In my two most recent visits to Dr. Lu, it seems he has moved into more intensive action on my throat. In addition to using more needles in and around my throat area, he has also used some electrical stimulation, hooking up wires to a pair of needles, and sending a pulsed charge between them. It doesn’t hurt, but I can feel the pulsing. He’s also doing some massage, both of the head and neck, and my arms, legs and feet. So far, it’s not like I come home from a session and I’m suddenly able to swallow something else, but it is true that I’m continuing to improve at a much more rapid pace than before the acupuncture.

This morning’s successes have left me drunk with power. Now I’m thinking that this weekend I may be bold enough to try scrambled eggs.

It’s Out!

No more loose ends! The feeding tube is out.

The folks at Interventional Radiology did not pass up their last opportunity to impress me negatively. Though I showed up early for my appointment, they waited until twenty minutes after my appointment time to call my name. Or actually, “Davis Paul?” in an Asian accent, which I took as the same thing. I was ushered back into the warren of halls and rooms that makes up UW Radiology-land. Finally, I was given a gown, and left in a curtained-off area of a hallway, used as an impromptu procedure “room.”

I sat there for another 20 minutes, until someone from the MRI department came by to put a patient in that area. She was quite surprised to find me, since I apparently didn’t belong in what is supposed to be the MRI holding area. She went off to find where I belonged, then walked me there.

This turned out to be the odd nurses station-cum-curtained holding area that I recognized from previous visits. There, the several people who work out of that space managed to not bump into each other and also find me a chair, so my waiting could continue. This was after I had a conversation with them about whether or not they needed a stretcher for me to lie down on. The nurses I was dealing with seemed not to know. Since there was no stretcher in the area, and I could only imagine what a challenge finding one would pose to their 8K brains, I confidently told them that I was happy with the chair, so that they could skip looking for a stretcher, unless they would need me to be on one for the procedure. The nurse I was looking at seemed overjoyed to be spared more work, and left me alone.

After another 5 or 10 minutes, some doctor-y types showed up, and expressed minor annoyance that I was “hiding” behind the curtain and they couldn’t see me there. I said, “Hey, I just sit where they tell me.” (I wondered where they had expected me to be; it wasn’t like it was a big space, and there was someone else on the other side of the curtain, wedged between me and the nurses desk. One doctor asked me a few questions, then, after a pause to go on the other side of the curtain and help explain to the other patient there what they were about to do to her, returned, opened up the kit, and began. Extraction was dirt-simple. I was told to grit my teeth, and close my eyes, and when I said I was ready, he pulled it out. Poof. Done. (I don’t know why I needed to either grit my teeth or close my eyes, since it didn’t hurt at all, and, on the scale of gross-outs in my life, was pretty low.) I was told the hole might ooze for about a week, so I would want to keep a bandage on it. I got some gauze taped on by the nurse who’d dumped me in MRI, who’d just returned, no doubt from leaving someone else in the wrong place. He jumped to help after the doctor fumbled and got the tape stuck to his gloves. How could one fail to be impressed with such competence? Frankly, I could have taped it better myself.

So, in all, a five-minute procedure I could have done at home took an hour. One assumes there might have been complications for which it would be good to be around medical professionals, but in the event, it did seem like a huge waste of time.

Afterwards I stopped by Otolaryngology and Carol looked at my little lump. This morning it is smaller, and looks even less inflamed, so Carol decided to leave it alone, and told me to call if it starts getting worse.

So, now at last, I’m home, without something rubbery dangling from my chest. Yeah!! I’ll be interested to see how long and how much I ooze, and whether I end up with a dent at the tube site.