Paul vs. the Squamous Monster

Two Years

2006-02-28T12:23:00.000-08:00

(cross-posted from On the Cusp of a Real Breakthrough.)

It’s an emotional time for me. I’ve lost track of the number of times I’ve had tears well up in the last 24 hours. The latest was just a few minutes ago, while reading Kimberly’s blog post. She’s become quite a writer, which may be one of the shiniest silver linings in what we’ve been through in the last two years.

Two years ago yesterday, I lay unconscious on a table while highly-trained professionals cut my body open, took it apart, switched some parts around, and then literally screwed and stapled me back together. It’s a hint of defensive patterns of memory that I hadn’t noticed the date until Kimberly brought my attention to it. I went through twelve hours of surgery to remove a cancerous tumor at the base of my tongue, an operation which was successful, and we hope curative, but not without consequences.

I spent much of yesterday going back to read through our chronicle of that time, the blog Paul vs. the Squamous Monster. There were details that I’d already forgotten. (Stress, fear, drugs, pain and depression aren’t good for sharp memory.) Reading that material, I found myself reliving those days, with the attendant moisture around the eyes that Kimberly and I have come to call “being leaky.” By the time I made it from January to June, I stopped reading, and just went for a full-on cry.

One thing I noticed, in reading with the perspective of the time since, was the brilliant bravery of the two people sharing that ordeal. The posts describing the days immediately after the surgery capture a vitality and humor that I’d forgotten. Nowadays, when I think back to the day of my surgery, what I tend to recall is my fear, how despite assurances I strongly suspected I might die on the table. But what comes through to me from reading is all the love and support that got me to that table, the skill of the people who took care of me, and the astonishing strength and resilience of that guy who was making jokes afterward in the ICU, despite the bandages and the tubes and the massive trauma to his body.

Recently, I’ve been so caught up in my swallowing problems, how I can’t eat the way other people do, my struggle with my fluctuating energy levels and various aches and pains. I spend a lot of time feeling frustrated, or disappointed by my body, having an adversarial relationship with it. Yet in reading I was reminded how well it did back then, how it was “rock solid” on the table, and how quickly I started healing, and how well. I remember feeling differently than I do now. One comment I wrote while we still struggling how to successfully tube-feed me stood out: “It’s a pretty smart and durable old body, after all.”

Yes. Yes, it is. And I’ve been giving it too little credit and affection lately.

Re-reading the six month arc also helped me understand another aspect of my life today. I was sensitive to the way the many months of troublesome tube feeding wore away at that remarkable couple who handled the surgery and post-op so well. The speedy healing slowed to a crawl, and swallowing function kept failing to return, and so much attention went into a complex struggle to simply get enough nutrition and medication through a tube. The one way I didn’t exceed expectations in my healing was in swallowing. I must occupy one of the extreme outlier positions on that curve. Instead of six weeks, I had the tube for nine months, and its removal was my favorite Christmas present in 2004. I still have difficulty eating and drinking, and probably always will.

In retrospect, I’m aware how little we understood the way my previous radiation treatments would affect my healing. It hadn’t occurred to me that I might have muscle motility problems in the small esophageal muscles; I didn’t even really understand that they existed. I didn’t realize that, since all that tissue had been irradiated more than 20 years ago, it would still tend not to heal as well, and would tend to be stiff or scar. Having finally regained considerable swallowing function, I feel sad for that optomistic young fellow so eager about his barium tests in the first month or two. If only it had worked the way he’d expected it to.

Part of this tale is what happened when the immediate crisis had passed, the intense outpouring of support and love from friends and family had scaled back down, and we passed into a realm that is beyond what they teach in medical school. We were caught in a limbo space, where things were both back to normal, and yet really, really not. Healed in so many ways, but still horribly impaired and only healing slowly. Beyond the expertise of the surgeons, and without skilled “healers” who could give real answers and guidance. Struggling day after day after day, in pain and fear and disappointment. No wonder we got depressed. No wonder we never quite got back on track, even when I was finally able to start swallowing.

We’ve come a long way since the hardest of those times, but we’re still shaking off their effects. The love and determination of that couple that was leaving little hearts on the ceiling of the hospital room is still here. But we got pretty bogged down, and exhausted, and we haven’t fully regained our forward momentum yet.

We’ve got plans for a good 2006. The possibility of moving to Oakland has helped us take a good look at our lives and what’s important to us. We’re making a commitment to building a happier, more satisfying life. This weekend we talked to a contractor about starting the kitchen remodel we’d had scheduled for Spring 2004. We’ve been through our first class to qualify to adopt. Kimberly will be starting a nice new job soon.

It’s exciting to think about having a life of constructive change. We’ve spent so much of the last two years caught up in a struggle for survival. It really is time for something new. Still, re-reading the story of that time enables me to recall important things I want to bring forward into that life. These memories, even (especially?) the ones that make me ‘leaky’, help me understand who I am.

I know I have a habit of discounting my successes, and dwelling on failures, and being critical of myself. But yesterday, I spent the day engaged in reading a very impressive story, and it made me realize just how much I have to be proud of, even to boast about. That made me cry all by itself. What an amazing ordeal.

A New Chapter

2005-11-05T16:42:00.000-08:00

I've finally gotten around to setting up a new blog, for me to write about my life beyond the battle with the Squamous Monster. (In fact, I set it up some time ago, but I've been really slow about starting to use it, or wanting anyone to know that it exists.)

But you are now officially invited to check it out. It'll be changing over the next few weeks as I replace the stock furnishings with my own, and tweak the appearance. But you come to read my blog for the content, right? My first serious post went up just now.

For those interested in technical details, this will be my first blog completely free of Blogger. The new digs are on my own contracted server, using the open-source WordPress for blogging software. My other active blog, for political commentary, Ratiocination, is on the same server, but driven using Blogger. For now.

I'll be leaving this blog here, but inactive. For all the new info, go to the new place.

Arrgh. Pledge Drives!

2005-10-12T09:13:00.000-07:00

I am an NPR junkie. This means that, at least twice a year, I have to live through the ordeal of pledge drives. For the first few years I lived in Seattle, I was able to pull the same trick I used to use in the Bay Area: in a city with more than one NPR station, when one goes into pledge drive, listen to the other. Sadly, as in the Bay Area, the Seattle area stations figured out this trick, and their drives now happen during the same week. Which is now.

As a true believer in public radio, I've been a loyal contributor for years, and I've renewed my membership in both of these stations. (I'm also a member of a third local public station, but it isn't an NPR affiliate.) Still I know that I have to listen to at least a week of clumsily ad-libbed pleas for people to pledge, and poorly performed demonstrations of various silly giveaway items, and the same special pledge-week versions of shows.

Once again, I find myself wishing public radio could be more like shareware. With shareware, you can download it and use it for free, but you are confronted at startup with a box asking you to pay for it. Sometimes you have to wait before you can click to dismiss this box, but once you do, you can still use it. But, once you've paid, you never see that annoying box again. I wish there were technology to allow radio listeners who have already pledged to get regular programming, while all those out there who haven't chipped in got the pledge drives.

Second best would be if NPR gave classes to local affiliates in how to make the pledge drives entertaining. At least the folks in Seattle are better than the ones at KQED in San Francisco, who seemed never to have heard that "more flies with honey" theory.

Still, as bad as they are, a few weeks of pledge drives spread around in a year is SO much better than the constant, annoying ads on commercial radio.

Another Time Around

2005-10-05T09:15:00.000-07:00

Looks like I made it through another trip around the sun. Apparently, if one keeps hanging on stubbornly, this happens. It's very confusing: just when I'd gotten used to thinking of my age as "45", I have to learn something new.

I've been having serious thoughts about retiring this blog, and starting a new one dedicated to my daily life in a metaphor that doesn't involve fighting a deadly disease. I'd thought I might actually get it up and running by today, but, well, I guess that 'gang agley'. (What is the past tense of 'gang' anyway? Any Scots out there?)

Celebrations of this oddly amazing yet also mundane occasion have so far been low-key. There is talk of going to see the Wallace and Gromit movie on Friday. I am a wild and crazy guy.

Starting the Kick

2005-09-26T11:36:00.000-07:00

Back in my youth, when I ran on the high school cross-country team, I spent a lot of time in each race thinking about "the kick." Race strategy dictated that one reserve a last bit of energy for the very end of the race, when one would pick up the pace, and pour on speed toward the finish. Some runners had a natural kick, but others like myself struggled throughout the race to judge the cruising pace well enough so that there would be enough left over for a good kick at the end. The trick of the kick was to not start too soon, which might cause you to burn out before the finish, but to start soon enough, and strong enough, to outpace other runners with whom you'd been pacing over the preceding miles. For some, the kick took the form of an all-out sprint when the finish line was in view. For others, it meant gradually picking up the pace across the last mile of the race, taking a psychological toll on the opponent, by seeming to get stronger as they felt tireder.

The idea of a "kick" came to mind this morning, as I was thinking about wanting to finish the year strong, wanting to pick up the pace and productivity in my life. The end of the year makes a good psychological "finish line," and the three months between now and then is a good amount of time for gradual projects like an exercise routine to have made a difference by then.

There have been many prompts toward these thoughts. In Seattle, the seasons have definitely changed; days are cooler, leaves are changing, dawn comes late. Kimberly had her birthday yesterday, which means mine is days away. For a celebration, we spent the weekend in Portland, where the mirrors on two walls of the bathroom allowed, well, a frank assessment of one's physical assets. And, perhaps fertilizing the ground, Labor Day weekend saw us at Deep Springs for an alumni reunion, with much opportunity for reflection on potentials old and new.

All of which is throat-clearing by way of considering my desire to close 2005 with a "kick." Today it is my intention to gradually pick up the engagement, creativity, and productivity in my life, in a variety of ways. The goal is to make some substantive changes for the better, that will continue to pay off in 2006. What those changes are will be the subject of later posts. Among them, obviously, more work on building my physical fitness, for while I was able to walk all over Portland's Pearl District on Saturday, I'm still feeling it this morning. (But my stiff and aching muscles didn't stop me from getting packed up and out walking to do errands this morning, and making it to the cafe for a bit of wireless blogging. In true Seattle style, I'm one of 8 laptop users here, vs. 1 guy who's just reading the physical newspaper.)

Paul Two-Navels No More

2005-09-15T21:21:00.000-07:00

On September 7, I was back at UWMC getting cut by Dr. Futran. Amazingly, I actually requested this, and went under my own power.

When they removed my feeding tube back in December, it was a fairly simple process. Essentially, they grabbed the tube and pulled it out. However, since the tube had been in there for months, the skin had grown around it, so that when it got yanked out, I was left with a dimple in my belly. For the last 10 months I've had two navels; the one from my umbilical cord, and the one left by my feeding tube.

Happy as I was to be eating again, and no longer dependent on the tube, the extra dimple really annoyed me. I wanted it gone. But I didn't really want to get cut anymore, and I figured it would change over time, and maybe become less annoying to me. But, by the last time I saw Dr. Futran, it was still there, and still annoying, so I asked him what would be involved in "fixing" it.

He said that it would be a simple procedure to "revise" that, that he could do in the office, and he'd be happy to do it. So we scheduled a longer appointment, and that was Sept. 7.

First, he injected my skin with a local anesthetic, one vial below the dimple, and another above. His technique betrayed that he'd been a dentist before otolaryngology, and had taken the course about tips and tricks for injecting without pain.

Half an hour later, I was lying flat in a reclined procedure chair, sterilized and draped, and he went to work with the scapel. For me the hardest part of the procedure was that lying back that way gave me a dry, ticklish spot in my throat, and I kept coughing. Well, that and the moment during prep when they'd stuck the cold and jelly-fish-like sticky grounding pad for the electro-cautery machine to my side. (Brrr.)

Being conscious for electrocautery was a new addition to my medical experiences. There is a sizzling sound, and there can be smoke and a smell. I suppose others might find it fairly disturbing, but I was amused by the idea that my belly was being arc-welded, like a piece of farm machinery out at the ranch.

Two layers of stitching followed, one deep to take the bulk of the strain, and the other to bind the top of the skin and make it heal smoothly, and I was done. Antiseptic ointment, a bit of gauze, and back in ten days to have the top stitches out. Voila!

By shortly after dinner, the local anesthetic was wearing off. Acetaminophen was able to keep the pain to a mild level, though I did get a scrip for vicodin. I also had a round of antibiotics. That night, I changed the bandage, and looked at the handiwork in the mirror. It seemed like it would heal to a short, curved, and most importantly, flat scar, not even the most dramatic on my torso, much less my whole body.

I'm pretty happy about it.

The stitches came out today. I'm posting three photos, before, with stitches, and with the stitches out. (The scar in the upper right is from surgery I had back in California, to drain fluid that was building up around my heart. In the middle photo, you can just see the long scar on my forearm from my squamous surgery. As I say, the new one is not so dramatic.)

Bug on the Run

2005-08-17T21:54:00.000-07:00

Today I started to feel like myself again. There is really something wonderful when you've been feeling run down and sick for day after day, tired and achey and foggy-headed, and then it goes away. It's wonderful

Monday I went to my doctor's office, where they swabbed me and looked me over. They now have a rapid strep test, which was negative, after which they sent the swabs to be cultured to test for all the stuff that doesn't show up on the rapid test.

I did get a prescription for Nystatin, to clear up a flare-up of thrush that had bloomed over the weekend and started to hurt my tongue. After a few days, my tongue feels much better. Between that, and reaching the 10 day point after which most bugs have resolved themselves, I am doing pretty well.

Now I just have to catch up on all the stuff that didn't get done while I was feeling bad.

The Littlest Visitor

2005-08-13T08:48:00.000-07:00

When our family from Houston visited us recently, we had a fun time with our two nephews, Max and Reed, nicknamed Boo. While they were here, I would have thought that the smallest of our visitors was the adorable Reed, who is not quite two years old.

Now, however, it appears there may have been another visitor from Houston, one which didn't get back on a plane at the end of a week. I refer to a malicious microbe, which seems to have found my body a pleasant spot for an extended stay. Monday night I felt like I was running a fever, had a headache and muscle aches. I did not sleep well, and Tuesday I spent most of the day trying to decide which of my overall body aches were related to cycling, and which were signs that I had a bug. Since exercise doesn't usually leave me with a sharp headache, I knew that was probably a bug. Though so far, I haven't run more than a low-grade fever, I've been wrestling with the bug all week.

But it wasn't until yesterday that the littlest visitor and its replicated cohort modulated into their latest game, "let's give Paul a sore throat." Let me just say at this point that it seems like a design flaw in the universe that, after all I've been through, I haven't somehow gained immunity against bugs like this. And I really don't want to get into the whole 'giving a guy who has problems swallowing already a sore throat' business. (And they want me to believe in Intelligent Design. Ha.)

Not only is this interfering with eating, it interferes with my sleep. I wake myself up coughing, because the whole unconscious-saliva-swallowing-and-breathing thing, which is fairly tricky for me already, gets much more complicated when there is a sore throat and a little post-nasal drip involved. It's quite unpleasant, and not at all restful.

Which is why, having now had a 1000mg of acetaminophen and a large mug of warm beverage, I'm going to try sleeping some more.

Full Body Cycling

2005-08-07T20:45:00.000-07:00

Normally, we think of cycling as a sport that involves lots of leg muscles. But today, after the second of our bicycling adventures, it's my torso and arms that are stiff and sore.

I think it's because, the way we do cycling, the actually pedalling seems to be the least of it. We don't just hop on the bikes and go, we drive somewhere and then hop on the bikes. Which means bending and reaching to put down the rear seat of the car. Then there is carrying the bikes up the half-flight of stairs from the basement to the driveway. There's bending over to remove the front tire, and then lifting and wrangling the bike into the back of the car. Then the other bike has to get up to the roof rack. At our cycling venue, the bike has to come off the roof, and the other out the back. Then we can start riding.

At least today we put my bike on the roof. (Here's a tip for using a roof rack: it's much easier if the bike is light enough for you to actually hold over your head.)

After the ride, of course, all the loading has to happen again, and then it has to be unloaded at home, including carrying the bikes back down to the basement.

Kimberly, for some reason, complains that her calves and situpon are the sore parts. (It appears there are some advantages to being too short to reach the roof rack, or manhandle a bike into the back of the car.) I believe my situpon benefits from the fact that I'm riding the same English leather saddle I've had since at least high school, the same one I rode across the country. It's well-adjusted to my ischial protuberances by now.

After our ride, we went over to the Ballard farmers' market, where my newly purchased cycling shoes weren't the only pair. Riding to the market seems like a common practice. We may start doing it ourselves, since the Burke-Gilman trail runs most of the way there. (The Burke-Gilman is a former railroad right-of-way that's been converted into a 17 mile paved path through Seattle and north along Lake Washington.) Then the driving would only involve getting down and back up Queen Anne Hill. I may be optimistic, but I'm not even approaching the idea of riding up that!

Back on the Bike

2005-08-06T07:55:00.000-07:00

I finally rode a bicycle again last night. It's been a long time; even longer than the time since I last posted here.

Partly, this was a delayed response to watching the Tour de France last month. Partly it was due to my disappointment with myself at not having kept up with my exercise, to the point past where feeling sluggish turned into feeling achey and bad. I've realized I'm too old and beaten up to go without exercise; if I don't work my body, it eventually hurts physically just to sit around.

Another source of inspiration was Kimberly's discovery that the Lance Armstrong Foundation was organizing a ride in Portland on her birthday at the end of September. That seemed like an exciting goal, especially since they were doing several routes. The shortest, a relatively flat 10 miles, seemed like something anyone could do with a little preparation. Still, I figured I really ought to try riding, just to make sure I wasn't overestimating. My body's current capacities are still a mystery to me.

It took several weeks to follow through on this idea. I envisioned riding a lap around Green Lake, a park nearby that has a lovely, flat, paved path around it. One lap is just under 3 miles, so a 10 mile ride is a bit more than 3 laps around Green Lake. I decided my "test" would be one lap.

However, getting to Green Lake involves a car. Which involves a bike rack, which involves digging the pieces of the rack out of the spiderwebs in the back of the garage, and cleaning it all up, and putting the bike carrier component back in place of the kayak carrier components, and getting the whole thing installed on the roof of the car. Just the sort of obstacles that can delay execution of a Plan, no matter how Masterful. Lucky for me, I'd already recently tuned up the bikes themselves, so that all they required was some air in the tires.

This week the weather has been hot for Seattle, into the 90s and high 80s during the day, but lovely in the long evenings. To provide incentive and commitment, I asked Kimberly to go for a ride with me Friday after work. It seemed like it would be perfect weather. (It was.)

I wrestled Kimberly's bike onto the rack, and stashed mine in the back of the car. When Kimberly got home, off we went. It was really fun. It turns out that riding a bike is like riding a bike: you don't forget how. It was clear to me that, although it's been a very long time and much is rusty, this is the same body that has put in thousands of miles on bikes. It's just going to take some work to get the rust off.

It was very nice to have the ability to make one's own evening breeze after a hot day. And I passed the test; I was able to ride one lap fine.

This served as a "shake-down" ride. I discovered that Kimberly's bike is substantially heavier than mine, and really, it would be worth the few moments to fiddle with her brakes so that I can get her front wheel off, if it meant I could put her bike in the back, and mine on the rack on the roof. I also learned that I miss the cycling shoes I got rid of a long time ago, not so much the Italian Duegi racing shoes with the hand-carved stiff wooden insole and the cleats, but the pair of Avocet casual touring shoes, with the low-profile nylon uppers and the stiff, flat sole that would slip into the toe clips easily, and had that sweet little rubber bump just where it would nicely catch the edge of the pedal. (My running shoes are really awkward with my pedals.) I got a hint of how much training looms when we hit the short, very, very slight uphill section of the path, and I could feel my thighs straining. And I was made aware of just how much strength I've lost in my shoulders and neck, because holding my head up while leaning over the handlebars quickly got them burning. And boy, do they hurt this morning!

Despite those complaints, and the multiple attempts it took to get Kimberly's seat adjusted properly, we both had fun. And we're going to ride again tomorrow. And while our neighborhood is rather hilly, Seattle has many lovely flat places to ride. It may even be possible to chart a mostly level route around our neighborhood, until we're ready for some hills.

I've really got to get some proper shoes, though.

Reading

2005-06-14T12:04:00.000-07:00

A couple of weeks ago, the students in the memoir writing class that I just finished in the UW Extension Writers Program had a public reading at the UW Bookstore. For the reading, I reworked a piece that I wrote early in the year. Before taking this class, I had trouble writing multiple drafts. My teacher, Laura Kalpakian, and my classmates have, through their regular critiques of my work, helped me learn about that part of the writing process. Here's the piece that I read:
-------------------------------------------------------------------------------------------
Delivery

When Paul and I married seven years ago, neither of us knew this sad truth: I can't make a decent latte. Early in our marriage, Paul demonstrated, more than once, the process of transforming dark- roasted coffee beans and cold milk into a steaming, foamy, caffeinated treat. Standing by my side before the black and chrome contraption, he patiently guided me through the process of grinding, filling, tamping, steaming and pouring. The lessons did not take. Oh, I made a latte or two, but my lattes hissed and spit out of the espresso machine either too weak or too bitter. The barista who served me such a latte would not have been tipped.

One morning, when I requested Paul's assistance with the espresso maker yet again, he exclaimed in frustration, "I don't understand why you can't do this. You're good with machines... hell, you understand how most things work without reading the instructions. Do you have some sort of a brain injury?" This question, from the man whose pet name for me is Brains, struck me as absurdly funny. I burst out laughing, and Paul joined me. We stood in our kitchen, hugging each other, giggling.

My supposed 'brain injury' became a recurring joke. Paul would marvel that my injury had impaired only my ability to tamp grounds and steam milk. I would nod in agreement, and comment that the workings of the human brain are not fully understood by modern science.

Once my condition had been identified, Paul shouldered barista duty at our house. Each morning he would bring me a latte in bed. One of the small daily pleasures of my life was waking to the sound of my husband walking into our bedroom, singing this short verse:

Coffee drink delivery service
Coffee drink, if you are nervous
About how youÂre going to wake.
Have yourself a coffee break.

In January of 2004, Paul was diagnosed with an oral cancer at the base of his tongue. The surgery to remove the tumor would be long and dangerous, the lasting effects on his speech and swallowing uncertain. A few days before surgery, Paul expressed concern about my morning lattes. "You won't have coffee drink delivery while I'm in the hospital. What will you do? How will you wake up?" While his tone was light, I heard the dark thoughts and real questions beneath the surface of his words: How are you holding up? I'm sorry I'm putting you through this. Are you going to be OK?

I could answer the surface question easily. Finding coffee in Seattle is simple. The espresso bar in the hospital lobby could meet my needs while Paul was hospitalized. We have five coffee shops within as many blocks of our house. I would not suffer from lack of coffee.

I had no answers, simple or otherwise, for the unspoken questions. Too many unknowns waited on the other side of Paul's surgery. Would he survive the surgery, and the cancer, or would I lose him? What toll would his illness and treatment take on him, and on our relationship? I believed that I was coping well, but I knew that might change. I didn't know whether I would be OK.

Several weeks after Paul's surgery, I woke, feeling cold, in our still-dark bedroom. Pulling the down comforter up to my ears, I turned to snuggle up to Paul. The hand I extended landed not across his shoulder, but on soft, warm fur. In an instant, I went from half asleep to worried. Why was Paul up so early? He had been out of bed long enough that our cats had claimed the warm spot against his pillow. Was he feeling ill?

I was about to call out his name when I heard footsteps on the stairs, and caught a whiff of coffee. Relaxing under the comforter's warmth, I waited. Paul's singing wasn't elegant that morning, but it brought tears to my eyes. The latte was the best I've ever tasted, the love with which it was made almost visible in its foamy top.

The Weepies

2005-05-26T18:25:00.000-07:00

I've always been a sappy, idealistic kind of guy, the kind of guy who loves Frank Capra films because he wants to believe in goodness, and who wishes that the news from the Senate this week had been a bit more like Mr. Smith Goes to Washington. Luckily, Kimberly is pretty sappy in her own way, so neither of us has to be embarassed when we get misty-eyed about a TV show.

Since my lymphoma, I've developed an added dimension of this, which, for the lack of a better term, I'll just call 'the weepies.' There are just some things that can instantly trigger tears streaming down my face before I know it. My near-death experiences have left me with a clear channel straight to my unfiltered emotional heart, and every so often, something can zip right down that channel and hit a switch, and out come the tears.

It's not always tears of sadness, or pain. Often the opposite. In fact, to me the interesting thing about these tears is that they are often so many things at once, happy, sad, grateful, grieving. I wasn't kidding about that clear channel; this is undistilled emotion, before it's gotten fractionated into happy or sad. Depending on the trigger, it may have more a flavor of one or another identifiable feeling, but it's never, ever simple.

Over the years I've developed a list of some triggers, things that have set me off more than once, and some that will do it every time. A beautiful dawn, or the right kind of sunny day will do it, and for those the predominant flavors are joy and gratitude.

Songs seem to be good as triggers, and there are some that will get me weeping immediately, no matter what mood I'm in. One of these is the Louis Armstrong version of 'What a Wonderful World', although just about any other version will do. After what I've been through, the awareness of what it means to simply be alive to experience the world is powerful. I always think it's funny when that song comes on the radio, because there it is a happy, optimistic song, and there I am with tears running down my cheeks, barely able to speak, because it is such a happy song.

Other songs work for different reasons. Sometimes the lyric strikes me in just the right way, and sometimes it's something that I heard at a particular time, now linked to a particular experience. Bob Dylan's 'Knockin' on Heaven's Door' is one. You don't have to be Freud to figure out that a song with the lyric

that long black cloud is coming down,
I feel like I'm knockin' on Heaven's door

might have some resonance for me. It probably helps that I heard it on the radio late one night, when I was alone in my hospital room, after the radiation treatments had failed, and the chemo hadn't started working. I weighed less than 120 pounds, and was inexorably losing a pound a day.

So those tears are mixed with remembered fear and loss, as well as relief that, while I was knocking, no one answered. For a moment, that song connects me with the young man who was bawling that night at the hospital, and simultaneously with the awareness that I made it, when I really wasn't sure I would, and me-then has a good cry with me-now, and then the song ends, I wipe off my face, and go on with whatever I was doing.

In the past week, I've discovered two new songs that set me off, after the fight with the Squamous Monster. One I'd never heard before, but it was just so pretty. It probably helps that the lyric and structure remind me of both the courage I needed, and the strong feeling of communal support that made it possible, but I was teary before the end of the first verse. Not my usual response to a new song on the radio.

The song is 'One Voice', by a Canadian trio called the Wailin' Jennys. You can listen to it here, and read about these three young women at their website. Kimberly wrote a lovely description of hearing the song on Prarie Home Companion, which I'll just steal outright. (It's a community-property state. ;-) )

Then came a voice that demanded my attention, a woman's clear, pure voice singing:

This is the sound of one voice
One spirit, one voice
The sound of one who makes a choice
This is the sound of one voice.

A second female voice joined in, her close harmony floating just below the melody:

This is the sound of voices two
The sound of me singing with you
Helping each other to make it through
This is the sound of voices two.

With the third verse came a third voice, weaving its way through the other two:

This is the sound of voices three
Singing together in harmony
Surrendering to the mystery
This is the sound of voices three

This is the sound of all of us
Singing with love and the will to trust
Leave the rest behind it will turn to dust
This is the sound of all of us

After an instrumental interlude, the three women's voices returned. The first line of this verse mirrored the beginning of the song, but the meaning of 'one voice' was dramatically different:

This is the sound of one voice
One people, one voice
A song for every one of us
This is the sound of one voice
This is the sound of one voice

When the song ended, I was teary-eyed with joy, for both the beauty of the singing and the glorious hopefulness of the song.

(As I say, she's sappy in her own wonderful way, which makes it easier on both of us.)

The other recent discovery came as a surprise, because it's a song I've heard probably hundreds of times before, without waterworks. I think it's now a trigger because the lyrics resonate with how I'm feeling these days, as I move on with my life after a very bad time. There I was, listening to the CD player in my car, to a disc I've played before, and suddenly I was bawling. Luckily, I was parked in the driveway, working on my car.

So far, I've only tried one version of this song, so I don't know if others will work the same way. This one is by a singer named Alana Davis, and if you remember that 2003 Sony Super Bowl commercial 'Trip', with the guy who spends his kids' inheritance on a trip into orbit with the Russians, you've heard it. (There's a zipped MP3 file of the first two verses in the Sounds section of her website.)

The song is the classic 'Carry On', by Stephen Stills, and the beginning has a whole new meaning to me after getting through this illness.

One morning I woke up and I knew
You were really gone
A new day, a new way, I knew
I should see it along
Go your way, I'll go mine and
Carry on

The sky is clearing and the night
Has gone out
The sun, he come, the world
is all full of light
Rejoice, rejoice, we have no choice but
To carry on

The fortunes of fables are able
To sing the song
Now witness the quickness with which
We get along
To sing the blues you've got to live the dues and
Carry on

Carry on
Love is coming
Love is coming to us all

Seven years ago today...

2005-05-23T12:43:00.000-07:00

...Paul and I married. One of the readings at our wedding was this excerpt from Anne Morrow Lindbergh's A Gift from the Sea:

A good relationship has a pattern like a dance and is built on some of the same rules. The partners do not need to hold on tightly, because they move confidently in the same pattern, intricate but gay and swift and free, like a country dance of Mozart's. To touch heavily would be to arrest the pattern and freeze the movement, to check the endlessly changing beauty of its unfolding. There is no place here for the possessive clutch, the clinging arm, the heavy hand; only the barest touch in passing. Now arm in arm, now face to face, now back to back - it does not matter which. Because they know they are partners moving to the same rhythm, creating a pattern together, and being invisibly nourished by it.

The joy of such a pattern is not only the joy of creation or the joy of participation, it is also the joy of living in the moment. Lightness of touch and living in the moment are intertwined. One cannot dance well unless one is completely in time with the music, not leaning back to the last step or pressing forward to the next one, but poised directly on the present step as it comes. Perfect poise on the beat is what gives good dancing its sense of ease, of timelessness, of the eternal.

"Error: brain overload in Paul.php at line 4"

2005-05-22T18:41:00.000-07:00

My brain is full, and I'm tired in that odd way that only comes from doing almost no physical activity while staring into one or more computer screens for hours, navigating directories on remote hosts, installing software, and figuring out where you've screwed up so that the damn thing will work.

It's a good thing that Fox TV is showing the second of the Star Wars prequels in about 20 minutes. I'm in need of a good brain flush. I watched the first one a week ago, and I found that it was actually better with commercials. Kimberly hasn't seen the one that's on tonight, but she's out at a rehearsal. (I told her it didn't matter; I can't remember anything significant happening in this one. There were clones and droids, Anakin is a petulant teenager whom Padme marries for no apparent reason, and a whole Jedi-meets-Gladiator bit, I think that's it.) We'll be seeing the new one tomorrow night, at the great Cinerama theater downtown.

Why was I banging my head online this way? That's a bit complicated.

Kimberly has her own blog, which, like this one, is hosted on blogspot.com, a free service of Blogger, now part of Google. Blogger is a pretty good way to get started in blogging, but, as you continue using it, you discover that you are limited. The biggest limitation is that Blogger is often slow, or just downright unavailable, or fails right in the middle of creating a post. After this has happened a few times, it gets really old.

So Kimberly has been dreaming of leaving Blogger behind for a system more under her direct control. We are already paying for a website, nosmallplans.com, with a pretty reliable hosting company, so she's been imagining having her blog there. Months ago, I put my political blog there, though I was still using Blogger as the front-end, a half-way solution at best.

This weekend we finally started to make Kimberly's dream come true. There is free open-source blogging software available, and today we spent time installing one, called WordPress, and configuring it. The brain-numbing part of it was figuring out which hoops to jump (or not jump) through because we wanted it in a different directory from my website, to which we had previously pointed Kimberly's very own domain name.

As is often the way of such things, the final answer, when I figured it out, was blindingly simple, and my problems were the result of misinterpreting confusing documentation, imagining it to be more complicated, and no doubt an occasional typo at the wrong moment. All of which were aggravated by a slowdown at our broadband company, and an unusual technical glitch at the host company, which required an online chat with their support staff.

But I am able to end the day knowing that all the software is in place, and working correctly. Still remaining is all the work of setting up the new blog template, and copying and converting the contents of the old website into the new format, but thankfully, that's Kimberly's job.

Still, the experience will make it easier for me to use WordPress to set up version 2 of my coaching website in the form of a blog. And spending more time rooting around in the directories, and using the tools provided with my hosting account, should make it easier if and when I want to add mailing lists, shopping carts, or other bells and whistles. I went to a coaches networking meeting on Tuesday, and there was a presentation got me excited about future uses of my website in support of my coaching business.

(Also at this meeting were a couple of my teachers from my coach training, and they were very happy to see me again, and hear that I was back in action. One of them has offered me the opportunity to write a piece for a book she is putting together. But that's another post, for another day.)

Back in Business

2005-05-12T13:03:00.000-07:00

As many of you know, before my diagnosis I was starting a new career as a life coach. I was finishing up my last class, and starting the process of lining up more paying clients. That was one of the first things put aside in order to confront the Squamous Monster.

Since then, I've had plenty of time to contemplate the irony of having cancer appear in my mouth, just after committing to a career that primarily involves talking to people. I've also had plenty of time to worry about the surgery's effect on my speech, and wonder if someone would hire a coach they had trouble understanding.

Most importantly, I wondered when I would heal enough that I'd have the energy to do coaching again. I've been pretty wrapped up in my own struggles. Being a good coach involves being able to focus on the client, and keep yourself to one side, in a way that was neither appropriate nor possible for me for a long time.

So it is a sign of my increasing familiarity and acceptance of my new normal that I have been spending the last few weeks preparing to dive back into coaching, and heading for the day when I can announce to the world that "I'm back in business!"

I've dealt with my personal issues about my speech through the tactic of actually talking to people. People seem to understand me just fine. I've even successfully coached a client who never knew me before the surgery. There is no problem.

Trickier has been the whole "having my own s**t together" aspect. I knew I could handle one client OK, but could I imagine multiple clients? Could I handle the focused effort of setting up a practice: finding clients, finishing the last details for my coach training certification, implementing a marketing plan? At the beginning of this year, the answer was "no."

But now the answer is "Yes!"

In the last month I've turned a corner. I'm no longer preoccupied with my recovery in the way that I was. And having dealt with a lot of my emotional stuff, I now have energy I want to devote to other things. Positive things. Moving forward in my new life things.

It is true that my body still tires easily, and I'm not swallowing as much as I'd like. I'm working on that, trying to get more exercise and seeing a new acupuncturist (who actually needles my tongue!) That's just part of life here in New Normalville. I'm not spending time wrapped up in it, or beating myself, or the universe, up over it. Life goes on.

Conveniently, during a coaching session I don't have to run anywhere or eat anything. It works out quite nicely.

I've had two final tests for myself to see if I was really ready to dive back in. The first was to revise my website. I'd put one up back in 2003, but I felt it didn't represent me anymore, and besides, it was really ugly. I figured that if I could focus enough sustained effort to make the thing look prettier, and feel good enough that I could honestly rewrite the text, that would mean something. It became a way for me to gut-check myself, and make sure I was really OK with going back to work.

I'm happy to say the success is now posted, at http://www.nosmallplans.com . It'll be evolving over time, but test 1 is complete.

This post is the final test.

I'm hereby announcing to my friends, family and greater blogospheric fandom that I'm back in business. Now.

And I am going to shamelessly ask for your help. I'm looking for clients. I expect some of you might want to use my skills, and almost certainly some of you know someone who could benefit from working with me. Please contact me, or tell that person about me. I do my coaching by phone and email, so this goes for those of you who live far away, too. C'mon folks, I've got a lot of talent and skill; we can't let that go to waste! (Please?)

For more details of what I actually do as a coach, please read the website. In a nutshell, I help people see new perspectives and approach their life's challenges in a new way, whether that challenge is getting around to cleaning up your house or trying to find an emotionally rewarding career, or living with a chronic illness. I ask questions, provide exercises, and offer support to help people get "unstuck", or to see a way through a tangled mess. I'm pretty good at it.

So please help me get back to it. And if you can't send me a prospective client, do send my your good wishes. Your support since the start of this adventure has been wonderful, and I still rely upon it.

I'll keep you posted on how things are going.

News Release

2005-05-01T13:07:00.000-07:00

Officials in the Pacific Northwest today announced the final clear-cutting of the Seattle National Weed Refuge. Naturalists and botanists reacted with sadness and criticized what one called "the end of a major national resource."

Though it is a private facility, the SNWR's end follows on the heels of several Federal policy decisions that have also angered environmentalists, most recently approval for drilling for oil in the Alaska National Wildlife Refuge. Seattle operators refused to comment on future plans for the territory, but geologists have stated that there is no likelihood of finding oil there.

Robert Plant, of the University of Washington's Botanical Sciences department, decried the destruction of the facility. "It's the loss of an important resource of genetic material, and a blow to science. They must have had fifty different species of dandelions, and the crabgrasses? Incomparable." Other scientists also spoke of the biodiversity in the refuge.

Established shortly after the millennium, the weed refuge developed great value since September 11. Several scientists were using the facility to study the possible ecological development of suburban areas following a mass evacuation, such as in the wake of a bioterrorism attack, or due to global warming. "It was a perfect laboratory," said Jim Sung Ouid, of the University of California, Davis. "It was almost like a normal lawn that no one had attended to for years."

Municipal officials in Seattle were not sorry to see the action. "It'll save us work", said one official, referring to a possible citation of the refuge under the city's public nuisance ordinance. The reaction of neighbors was mixed. "Weed refuge? I thought that place was a crack house," said one. "Damn, I guess I'd better cut my grass now," said another. "At least that annoying buzzing is over," said a third, referring to the sound of the high-speed string cutters used to shave the property.

Owners of the former weed refuge have been silent about future plans for the site. Some observers have suggested they may attempt to grow a conventional lawn there, though the huge cost and effort involved in such a move leaves many skeptical. Local property owners and naturalists will continue to watch for future developments.

Paulo Pillow

2005-04-23T19:21:00.000-07:00

Paul works hard to attend to all of the cats' needs. Some afternoons, the cats need a pillow... or a bathtub.

Thud

2005-04-16T16:10:00.000-07:00

It's hard to describe how it feels when my body has one of its off days. With Kimberly, I've adopted the phrasing that I am out of "oomph." Today I feel like someone has stolen all my "oomph."

Earlier this week I was pretty active. Wednesday morning it was grey out, so I did my workout on the treadmill. But later it got sunny and warm, so I went out to weed-whack the backyard. That was a lot. Then Thursday I had a pre-existing date to walk around the neighborhood, and, since I was actually feeling pretty good, that was long. Now, as predicted, two days later, I am wiped out.

It's close, but not quite like feeling that my body is made of lead. It does feel like there is an extraordinary force of will required to move. The same degree of intention that, on a good day, has me up and moving, gets no real response. It's like I need to step harder on the gas pedal than normal. I imagine it's like being on a planet with more gravity, but frankly, that's not a science-fiction scenario I'd like to try. It's like my muscles need to work twice as hard, or they are missing some basic level of vitality and energy. The sense of exhaustion is so thorough that it brings to mind the phrase "bone tired."

Sometimes there is a mental fogginess that goes with it, but too often I'm relatively clear-headed. This is when I most feel like I'm trapped in an old jalopy. My mind runs through list after list of things I want to be doing, but I'm lucky to get myself out of bed and fed. This is when I get to do my spiritual work on acceptance. (I'm not so good at it.)

All my big plans for today will have to wait for tomorrow, or whenever. Sigh.

Ch-ch-changes

2005-04-02T13:08:00.000-08:00

Recovering from a serious illness is a mental and emotional process as well as a physical one. For me, now that the physical has reached a fairly stable plateau, the emotional and mental recovery has taken center stage.

It's trickier than it might seem at first. When you get a cold, or the flu, you're sick for a little while, but then you get back to normal. Your life continues as it did before, and you go back to being who you were, even if you're temporarily busy trying to catch up.

When you get sick with something chronic, or something that makes permanent changes, it isn't so easy. Try as you might, you can't get back to "normal". That pre-disease state is gone, never to be repeated. You can't go back to where you were before it all started, and pick up where you left off.

One of my internal strategies for fighting cancer works well during the physical treatment phase, but not so well after. Part of me fights the disease by essentially "sticking a pin" in an image of myself before the disease, and resisting the effects of the disease that pull me away from that. I'm in a tug-of-war, and stubbornly hold my ground.

Which works really well if what I have to do is persist through treatment after treatment. But when the treatment is over, that drive to return to the pre-disease image can become a problem. Because there is no room in that mindset for accepting the changes that have happened. There's no permission to acknowledge "losses", accept them, and move on. And, as you might expect, constantly comparing who I am now with who I was before isn't so good for my self-esteem.

So I've been working on letting go of "getting back to normal," and working on getting to a "new normal." I've been consciously working on accepting these scars as part of "me", and trying to believe that I might one day see them as emblems of strength and bravery, instead of deformities and wounds. (That's still only an abstract possibility at this point.)

I've been working on reconnecting my body to my sense of self, trying to shift out of the sense that "I" am just a mind-thing living in a brain, driving around in a cantankerous jalopy of a body. This involves tuning in to a bunch of sensations I've been screening out for some time, including everyday aches and pains, and the memories of others. It involves thinking about eating and nourishment as something less about calculating fuel mixes and minimum requirements, and more about taste, pleasure, and spiritual, as well as physical sustenance. It involves exercise for enjoyment and not as a rehab chore.

For some time, getting to a new normal has been about letting go of the old normal, and feeling my way into the new reality. There's a lot of experimentation. What is this like? Can I do that? How does this work? Often, the answer is familiar, because it is like it was before. But not in every case, and not in some important ways. It's hard to not get frustrated by the inconsistency. I'm like I was, but I'm not.

I want there to be rules. I want there to be known expectations. I hate having so much unknown. I hate having to carefully consider the vitamin capsules in the jar I just picked up, wondering if they are too big for me to swallow, and knowing that I won't know until I try. Part of me says, no, they look too big, get the smaller ones. Part of me says, I'm getting better, maybe they'll work. A simple purchase becomes an internal struggle between my cautious side that wants to take care of me by avoiding disappointment (or choking) and another side that knows the only path to improvement is trying new challenges. I'm doing that over and over again, walking the boundaries of New Normal. (As it turns out, they aren't too big, but they are hard to get down.)

Lately, I've been made aware that there are whole dimensions of New Normal I hadn't even started thinking about yet. A couple weekends ago, Kimberly and I went to visit our musician friend Erin in Oakland. It was a wonderful visit, full of old friends, music, interesting conversation, and good food. Erin, in addition to music, has a fine eye for art and design, and enthusiastically enjoys many things in life. She's a great cook, a habit she indulges in her new kitchen (the remodeling of which was covered in her blog). She made me some wonderful soups from scratch, rising to the challenge of elegantly feeding someone on a no-salt diet with limited swallowing.

That visit made me realize that a still-larger shift of attitude awaits. Unconsciously, I'd been living in a world of "surviving" or "not-surviving." I've been so focussed on "surviving" that I'd pretty much lost track of anything so radical as "living large". The reminder that, instead of merely not-dying, I could energetically embrace life, with enjoyment and passion, was a real eye-opener. "Oh yeah," I've been thinking, "I remember stuff like that!" It's been a while.

So, there's a lot of work ahead. I've made a start. And, having realized the challenge, I hope I can succeed with this aspect of healing. It's time.

Make it stop

2005-03-21T21:29:00.000-08:00

I'm very upset by all this uproar over the Schiavo case, in so many ways. I've blogged a little of my more political upset over on Ratiocination, but here I want to give vent to some more visceral, emotional feelings.

I've had the misfortune to spend a fair amount of time up-close-and-personal with hard medical decisions. I've been in the situation of choosing between gruesome medical procedures with some unknown probability of survival or an easier, but extremely short-term, option. So far, I've chosen to be poisoned, made sterile, cut open, broken and reassembled, all on the gamble that I'd get to live a longer, somewhat healthy life. But they were my choices, and making them hasn't always been easy. In exchange for some things I wanted, I've had to give up other things that were dear to me. I carry those losses, and they still ache. So, I've been able to completely understand cancer patients who make the other choice, and stop treatment. They are not wrong. I get it. They made different choices. It's the choices we make that define who we are.

And, had I been in the position of my friend Sharon, who spent all the years that I knew her holding her breast cancer at bay, only to have it finally break its chains and ravage her body, I'd want the option to do as she did: die peacefully at home, surrounded by my nearest and dearest. Her passing was one of the most profound moments in my life, wrapping together tragedy and honor and love and so many other things that make up the mystery of life, and death.

So, it's not just that the Schiavo case snags me because I've had a feeding tube myself lately. It's that it connects with my all-too-clear understanding that decisions about how we live, what we do and don't do, and how we die, are profoundly personal, and transcendently meaningful. This is an area where we should tread with humility, because the challenges are immense, and every situation unique and tragic in its own way. If ever there is a situation to reach deeply for your best behavior, your greatest respect for others, charity, forgiveness, honesty, and bravery, your highest aspirations for personal character, it is in those times. I am not a church-goer, but I do believe that it is in moments like these that we approach something holy.

Which is why I find the whole circus around Terri Schiavo obscene, to the point of nausea. The hordes of insincere, hypocritical exploiters of this personal tragedy make me want to cry. I hate to see this profound, holy, and tragic family situation grabbed for use in political or religious and any other agenda. That so many are willfully distorting or ignoring the details of the situation just compounds the crime. It is all just so, so wrong.

And what's to keep them out of my life? Where does it stop? I don't really believe that, had Terri left an advanced directive, it would have gone uncontested, or that the court's rulings would mean any more to her parents than the existing ones. And if Congress can butt in over the wishes of her husband, can I trust the system to let Kimberly make decisions for me, if I can't make my own? I've been too close to the medical edge for these to just be abstract concerns. The stunts in Washington this weekend are really chilling.

So, much as I wish I could just tune it all out, I can't stop paying attention. But I do wish it would all go away.

Yeah for me!

2005-03-16T00:09:00.000-08:00

Today I have actual scientific evidence that I am, in at least some ways, doing better now than I was two years ago. That I'm doing better than I was one year ago is pretty obvious, but two? That's a proposition that, from my perspective, seemed pretty unlikely. But it's true!

Today was my yearly visit with the cardiologist. The last time I'd seen him was when he checked me over before OKing the surgery. This year was going to be a bit more "normal", which meant he wanted me to do a treadmill test. The last one was two years ago.

They had a fancy new treadmill this time, but otherwise it was the same. First they adhered little electrode patches all over my chest, and clipped EKG leads to them. They put a blood pressure cuff on. My doctor came in, and we talked, and reviewed my meds, updated my history and then it was time to stand up on the treadmill and begin the test.

The test itself is broken into 3-minute-long stages. With each succeeding stage the treadmill gets faster and steeper. Stage 1 is a painfully slow 1.7 MPH, at an inclination of 10%. Next is 2.5 MPH at 12%, followed by 3.2 MPH at 14%, and so forth. As you progressively work harder and harder, the technician and the doctor keep an eye on the EKG readout, looking for signs that the heart is having trouble. Every two minutes, a blood pressure reading gives another measurement.

Two years ago, they stopped the test shortly into stage 3. I'd been showing EKG disturbances, and my blood pressure was lower than they wanted. This afternoon, I made it all the way through stage 3 (although I was working pretty hard by then) and my EKG was really good. My blood pressure was low, but given the EKG and the fact that, though I was breathing hard, I wasn't about to collapse, the doctor was OK with that. (Since I'm on medications that control my BP, it's a metric that's open for interpretation.) It's conceivable that, with iron will, I could have gone further into stage 4, but I was happy that he had gotten the info he needed, so we could stop at the end of stage 3.

So, I did much better this afternoon than I did on that test two years ago! Yeah for me!

I will admit that I've been training for the test. I've been doing at least 30 minutes on my home treadmill three times a week since Jan. 1, trying to get over a year of lying in bed and limited activity. And, over the last couple of weeks, I've been adding more inclination to build up the hill-climbing muscles. It also turns out that my treadmill happens to have a pre-programmed routine that is the Bruce protocol, so I've given myself a couple "practice tests" in the last couple weeks.

Even knowing all that, I had no idea how today's test would turn out. I really did lose a lot of physical conditioning while recovering from the surgery, and I've been unclear on how much I've made up since Jan. 1. And, my treadmill doesn't come with an EKG and a BP monitor, so who knew what they would show? As it turned out, they showed I'm doing better.

It's hard for me to express how happy these results make me feel. So much of my life lately has been about struggling with my body's limitations. But this afternoon, my body made me proud. That's something I haven't had in a while now.

I was also pretty pleased with how quickly I recovered. They continued to monitor me as I sat in a chair placed on the now-motionless treadmill, and so I could watch as my pulse rate came back down, and feel my breathing slow. I felt pretty good, actually. On my way home I could feel that I'd worked hard, but in a good way, a way that I also haven't felt for a while. My body was invigorated, not exhausted. It was pretty great.

Moments in Paul's World

2005-03-08T19:15:00.000-08:00

I was walking down the street this morning with a smile on my face. This was prompted by two things. First, I'd gone for a "routine" blood test, and it only required one stick with a small gauge needle, and no wiggling. Second, I was walking by a cafe, and I had the option of going in, buying some coffee, and actually drinking it.
(I didn't, but I could have. It was nice to have an option.)

What? You don't experience little thrills from getting a needle stick and then walking past a Starbucks? Huh. Well then.

Paul's Ten Things plus

2005-03-05T23:19:00.000-08:00

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

2005-03-02T15:38:00.000-08:00

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.

A cookie while you wait?

2005-03-02T13:35:00.000-08:00

Paul will be writing something about the lovely party that we had on Sunday. Lots of friends, lots of laughter, lots of chocolate; I certainly had a good time. While you wait for the funny, thoughtful missive that you are no doubt expecting from Paul, would you care for a cookie?

Many people do not think of pepper when they think of chocolate. Central Americans have have been combining chocolate, cinnamon and pepper for centuries, to great effect. These Mexican Chocolate Icebox Cookies were served alongside brownies with crystallized ginger, a gorgeous dark chocolate mousse, and some lovely chocolate-filled cookies baked by Anita. It was a real land-o-chocolate in our dining room. Sadly, I didn't photograph the whole spread before inviting people to dig in.

We're having a party!

2005-02-27T23:16:00.000-08:00

Note: This post will stay at the top until the party. There may be other new stuff below... please scroll down.

Save the date: Sunday, February 27, 2005. 2-6 p.m.

That's the anniversary of Paul's surgery, and it's time for a party that he'll be awake for, too. Come thirsty; we'll have lots of juice and IBP (Instant Breakfast Plus). And we'll be serving the last few cans of Space Food, which we've been saving for a special occasion. Chilled with a nice slug of rum? Eggnog has nothing on this. Or steamed for a festive Space Food latte; it's your choice.

Oh, and how could I forget CHOCOLATE, which was such an important part for me of this day last year! There will be chocolate... lots of chocolate. The form of this chocolate has not yet been determined, but it it will be dark, it will be good, and it will be plentiful.

More details to follow.

One year ago today... and today

2005-02-27T09:15:00.000-08:00

At this time, one year ago today, Paul had already been in surgery for two hours. He would be in surgery for ten more.

At this time, one year ago today, I was sitting in the surgical waiting room at the University of Washington Medical Center. As places to spend a day worrying go, the UW waiting room was quite nice. It's a lovely room, located on a corner of the building, with full height windows providing southerly views onto gardens, trees and the ship channel beyond. Soft chairs and love seats are arranged in conversational areas, tables with chairs provide a place to eat or write. A long work surface with data ports provides internet access, and there's a large desk on which sits the all-important telephone connecting the room to the operating rooms. I was the first person there, so I had my choice of location. I picked a spot near the corner of the two window walls, from which I could see both the gardens and the door.

At this time, one year ago today, I had already sent a short blog post out to our friends and family. This is part of what it said:

After weeks of actively gathering information and making choices about Paul's treatment, we've reached the point where, at least for today, it's out of our hands. This experience feels like an amusement park we didn't choose to visit. The past few weeks were the bumper cars; we could make decisions, and try to choose a direction, but we never knew when or from where the next jolt was coming. And now we've gotten on the roller coaster. We're strapped in, and heading up that first long incline. Clack, clack, clack. Once we reach the top, gravity takes over. We can decide whether to scream or laugh, hold our hands up in the air or hang on for dear life. Clack, clack, clack...

At this time, one year ago today, I sat alone, sipping a latte, waiting for my parents and friends to arrive and keep me company through the rest of a very long day.

At this time, today, one year later, I sit at my computer, sipping the latte that Paul just brought me. Paul is in our bedroom, reading the Sunday NY Times. I can hear him talking to one of our cats. He is - knock on wood, god willing and every other cliched, hopeful, superstitious phrase one might use here - free of cancer. He is still adjusting to the persistent, and perhaps permanent, effects of the surgery on his body. Things are a little better every day.

In a few hours, one year later, we're having a party. Although my parents won't be here, a number of the friends who sat with me last year will be. On that day, they brought me chocolate; this year, I am baking chocolate treats for them.

Most importantly, one year later, Paul is still here, and will be by my side when our friends arrive to celebrate that with us.

Things about my new life that suck

2005-02-24T15:17:00.000-08:00

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

2005-02-22T23:02:00.000-08:00

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.

Good Day Sunshine

2005-02-19T15:24:00.000-08:00

Last Sunday afternoon was gloriously sunny, but cold. The cats availed themselves of the patch of sun in our bedroom. Light, shade, shadow and happy cats - I grabbed my camera. Today's another bright cold day, making a lie of the idea that it rains all the time here.

Lyra in Sunlight

Sergei Sunning

Sasha's Stripes

1506

2005-02-06T13:02:00.000-08:00

When we had the house painted... hmmm... three years ago, we took down the small, ugly house numbers that were adjacent to our front door. Since then, we've been looking for house numbers that we like. The difficulty was in finding a font in which we liked the particular numerals in our street number. You'd be surprised how many fonts with otherwise nice numerals have a really dorky "1" or oddly proportioned "0".

In the meantime, we've had a house number "plaque" that Paul made using a sheet of 8.5x11 paper, a black Sharpie pen and tape. The numbers were really quite nice, but the materials not particularly durable.

Over Thanksgiving weekend, we finally found house numbers that we liked. My parents gave them to us for Christmas. Really, they gave us the money with which to buy them, and it took us several weeks to get down to the store to pick them up.

Last weekend, I made a paper template, on two sheets of 11x17 paper, showing the locations of the numerals, and the precise spots at which the pilot holes for screws should be drilled. I've seen these templates many times, as professional sign companies use them for installation of signage with individual letters and numbers. They now use computers to generate templates; the "technology" that I used is as antiquated as hand-drafting.

Yesterday, Paul installed our new house numbers. At the time, it was sunny, and the low winter sun on the thick numerals cast deep shadows against the column. By the time I took this photo of Paul presenting his handiwork, the sky was overcast, so the effect is different. Still, we like them a lot.

The New Workout

2005-02-01T09:35:00.000-08:00

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...

2005-01-25T13:01:00.000-08:00

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.

It's our birthday

2005-01-25T10:05:00.000-08:00

One year ago today, Paul wrote the first post of Paul vs. the Squamous Monster. It was a terribly frightening time for both of us, and we needed a way to easily share both the medical news and our feelings about it with family and friends. While I hope that you never have occasion to need such a thing, I highly recommend this medium if ever you do.

I have more to write, but it will have to wait for later. And Paul is planning to say a word or 200 here today as well. So, please check back. And, as always, we'd love to hear from you, too.

Customer Satisfaction Survey

2005-01-22T09:50:00.000-08:00

Yesterday, I received via email the following survey from the Coffee Drink Delivery Service.

Dear Kimberly,

We hope you have enjoyed your experience with the Coffee Drink Delivery Service. In order to monitor our performance and gauge our customer experience, we are sending you the following questions. Your answers will help us continue to improve our service. Thank you for your time.

1. My coffee drinks have usually been:
a) on-time and yummy
b) on-time, but sadly lacking in taste
c) on-time, but foul
d) late

2. My coffee drinks have been made with:
a) love
b) indifference
c) contempt and loathing

3. My coffee drinks have helped me:
a) sleep in
b) get up and go
c) in no way

4. The coffee drink delivery person is:
a) extraordinarily cute and adorable
b) sexy enough to be distracting, if I were awake
c) very kind and thoughtful
d) all of the above

5. The coffee drink song is:
a) an ever-changing source of enjoyment
b) a regular annoyance
c) something I usually sleep through

6. I wish the Coffee Drink Delivery Service would:
a) go away
b) bring me prune juice instead
c) stay the way it is
d) expand service to other cities, such as Houston

Thank you. Your responses are very important to us at the Coffee Drink Delivery Service. Again, we hope you are enjoying our service, and will continue to in the future.

Sincerely, The Coffee Drink Delivery Service

What, you may ask, is the Coffee Drink Delivery Service? And how might you sign up for it?

Since Paul is much more of a morning person than I, and a sweetheart to boot, he has, most mornings of the past few years, brought me a coffee drink in bed. One of the lovely little pleasures in my life is hearing my husband coming down the hall to deliver a freshly-made latte to my bedside table, singing his own special coffee delivery song:

Coffee drink delivery service
Coffee drink, if you are nervous
About how you’re going to wake
Have yourself a coffee break.

When Paul had his surgery in February, the service halted operations for a while. There were more important things on my mind than coffee, and other ways to acquire it. I coped. Now that Paul is feeling better, service has resumed.

My answers to the survey? 1. a; 2. a; 3. b; 4. d; 5. a; 6. d. (My answer to 6. was d only because we spend time with my family in Houston; otherwise the answer would've been c.)

To sign up for the service, you'd have to be in the service area. Perhaps you know someone who would be willing to start a franchise.

Anniversary

2005-01-14T22:42:00.000-08:00

One year ago today, Paul had the biopsy that resulted in his second cancer diagnosis. Paul remembers nothing at all of the hospital; we assume that's in part due to the general anesthesia used for the procedure. I, on the other hand, have vivid memories from the day.

We sat together in the outpatient surgery waiting room until well past Paul's scheduled procedure time because the surgeon had an emergency surgery. We read bits of magazine articles to each other, and eavesdropped on other patients and their families.

When Paul went into surgery, I paced the halls. I hadn't brought a book, and I couldn't focus on the work that I had with me. There's a very long corridor in the basement of the medical center; I think I memorized every door, every turn, every sign along it. After the estimated time for the procedure had passed, I went back to the waiting room... and waited almost another hour, too anxious to do much of anything.

The surgeon came into the waiting room in scrubs, his bright print surgical cap still on, his face carefully neutral. Sitting down next to me, he said first that Paul was in recovery, and wouldn't be awake for a while yet. Next came the critical information. "Pathology will have to confirm this, but the tissue we biopsied looks malignant." I closed my eyes. "Oh God, not again." A couple of deep breaths later, I asked, "What do we do next?" Handing me his card, he instructed me to call his office right away to set up an MRI, a CT scan and an appointment with him for Paul. He asked why the CT scan that had been scheduled for late November had been canceled. I told him that I didn't know, but that a CT scan had been done earlier in the fall. Then he was off to his next surgery.

I called to make the appointments. I called my office, to say that I wouldn't be in for the rest of the day (or, as it turned out, for another 4 months). I called my parents and burst into tears.

Some time later, a nurse led me back to the recovery room, where Paul was conscious but still quite groggy. Pulling a chair up close to the hospital bed, I held his hand. When he was sufficiently awake, I told him that the surgeon was fairly sure he had cancer again. We held each other and cried. Then he got dressed, and I drove us home.

Eleven days later, Paul started this blog, Paul vs. the Squamous Monster. And here we are, one hellish year later. It has been a rough ride, both physically and emotionally. We hope that, other than routine follow-up appointments and Paul's continued improvement with swallowing and speech, we have reached the end of this particular chapter in our lives.

Organizing and Eating

2005-01-12T20:19:00.000-08:00

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.

Out for a walk

2005-01-09T13:50:00.000-08:00

Today I am a child

2005-01-09T09:15:00.000-08:00

I grew up in a part of Texas where snow was a once-a-decade occurrence. Four years in New England did not cure me of my love of and fascination with snow... and it has been 20 years since I last lived there.

When I woke up early this morning, it was snowing. I was instantly wide awake. Awake like a child on Christmas morning, full of excitement and expectation. I have already been out once, in pajamas, gardening clogs and coat, to take this photograph of our house before our photocell-controlled electric "candles" shut off.

From my office, I hear children laughing. Across the street, our neighbors are building a snowman. With only the two lower parts of its body in place, it is already five feet tall. (This is good, heavy, packable snow!) I can't wait to see it finished.

Human Pincushion says "Good-bye, 2004!"

2005-01-01T13:58:00.000-08:00

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.

A chip off the old... umm... lens?

2004-12-28T22:15:00.000-08:00

Our nephew Max is beginning to show signs of an interest in a family hobby: photography. My father is a fine photographer, having spent much time and film on both buildings and his family. My sister and I have similar interests, though her photography now leans heavily toward family, mine toward buildings and, more recently, cats. Last night we were having dinner with my parents, Melanie, Lee and the boys. I was taking some photos with our digital camera, and showed Max one of the shots that I'd taken of him on the camera's screen. He wanted to take a photo, too! I had him sit in my lap on the floor. I held the camera for him, and showed him how to aim it so that he could see what he wanted on the screen. I showed him the button to push on the top; he had to work to push it down hard enough.

Max was content to sit in my lap while taking the first few pictures. However, after a few shots, he wanted to take pictures on his own. This resulted in several closeups: the tree shot, the floor shot, and a couple of photos of the dining room wall from 4" away, which because of the flash were completely white. More successful, I think, were his second shot of Mommy and his shot of the painting.

I'll note that Max clearly has a knack for making his subjects feel comfortable, even playful. That's quite a gift in a photographer!

I think it might be time soon for this new young talent to have a camera of his own, perhaps a used, low-megapixel digital model that will give him a chance to take all the photos he wants -- without incurring any film or processing costs.

Boxing Day Greetings

2004-12-26T19:58:00.000-08:00

Happy Boxing Day from Houston! We have been here visiting my family since Wednesday, and, thanks to the usual holiday busyness and the presence of two very active young boys (our 1-year-old and 3-year-old nephews), I'm more tired now than I was when we began this vacation.

The big news in Texas this Christmas has been the weather. On Christmas Eve, snow fell off and on in Houston for much of the day and evening. This was the type of snow that couldn't quite make up its mind whether it wanted to be snow, sleet, tiny hail or nothing at all. It was, however, something frozen that came from the sky and made its way to the ground in a more or less floaty way. And, during the evening, it began to accumulate on cold spots, such as rooftops and parked cars. The weather forecasters said that there might be up to an inch accumulation by Christmas morning!

What did my Connecticut-born-and-raised husband make of all this? He was completely stunned and amused by the strong reactions of the natives to what was to him an inconsequential amount of frozen precipitation. At first, he was unwilling even to grant the snow a designation beyond a "flurry." Upon leaving my sister's house after Christmas Eve dinner, and noting the buildup of snow on the roof of the car, he conceded that this could be considered a "dusting" of snow. And, when we arrived back at my parents' house, he made a small snowball from said snow, and tossed it at the neighbors' car. We went to sleep hoping that Santa might really bring us a white Christmas.

Sadly and strangely, Houston was too far north to really get in on the snow that fell overnight on Christmas Eve. Parts of the South Texas coast got a real snow, with accumulations of up to a foot. While Texans are inclined to make a big deal over any snow at all, as it is so rare here, this really was enough to be considered a white Christmas. If only the main storm front had extended 50 miles farther north, we would've been teaching our nephews how to make snow angels. Maybe next year... (I can hope, can't I?)

Wishing for biscuits

2004-12-19T22:38:00.000-08:00

This morning I was at the preserves-making again. Today's recipe was Cranberry Cherry Almond Conserve with Orange Liqueur, a variant on a recipe from one of my preserving books. This is the second time in a month that I have made this recipe, as the little bit that I tasted last time was so good that it called for repeating. As I was going about the process of ladling the conserve into jars, I accidentally knocked over a full but uncapped jar. While it did not escape onto the floor, the lovely contents spilled onto the dish towel on which the jars were sitting. Oh, happy accident! As I could not put that 1/2 cup or so of (perhaps contaminated!) conserve back into a jar, I scooped it up into a bowl, and set it aside. And then, when the jars were boiling in the canner, I pulled out a small spoon, took it and the bowl of conserve to the kitchen table, and ate it while I read the NY Times Sunday Magazine.

While I was savoring the conserve, I found myself wishing for biscuits. And I remembered that, shortly after Thanksgiving, our friend Mason asked for the recipe for the biscuits that we served at a Thanksgiving dinner a while back. Since I'm typing out the recipe, I'll share it with you, as these biscuits are remarkably good with everything from a turkey dinner to homemade jam.

Angel biscuits are a raised biscuit, meaning that they are leavened with both baking powder and yeast. While yeast rolls, like yeast breads, rise twice before baking (once after making the dough, the second time in the pan prior to baking) these raised biscuits are baked with only a short single rise or no rising time at all.

As I've never known anyone outside of my family who makes angel biscuits, I've always thought of them as a family recipe. I thought the same thing of the raw cranberry orange relish that is one of my favorite parts of Thanksgiving dinner, until I saw the recipe on the back of a bag of cranberries. (Oh, the things we learn as we grow older!) It turns our that there are many recipes for angel biscuits available at Internet recipe sites, so clearly other people have been making them for a while, too.

My fifteen minutes of research suggests that angel biscuits are a traditional Southern recipe. (My mother's people have been Southerners since they arrived from the British Isles, so that fits.) The name "angel" supposedly comes from their light texture; because the addition of yeast makes them almost foolproof, they are also known as "bride's biscuits." (That name, suggestive of brides who moved from their parents' home directly to their husband's at such a young age that they had not yet mastered the art of the traditional baking powder biscuit, is amusing to one who married at 37.) While the ingredients are almost identical in all recipes, there are some small variations in their proportions: a little less sugar here, a little more flour there. One recipe has 2 packages of yeast. However, the greatest variations are in preparation; more on those later. First, here is my family's recipe:

Angel Biscuits

5 cups flour
1/4 cup sugar
1 tablespoon baking powder
1 teaspoon salt
1 cup shortening
1 package yeast
1/4 cup warm water
2 cups buttermilk (room temperature)
Melted butter

Preheat oven to 400 degrees. Dissolve yeast in warm water, set aside. Sift together flour, sugar, baking powder and salt. Cut in shortening until coarse crumb texture. Add yeast and buttermilk to dry ingredients, mix well. Turn out onto a floured board, and roll out to 1/4" thick. Cut with a biscuit cutter. Dip in melted butter, fold gently in half. Bake for 12-15 minutes, until lightly browned. Makes approx. 3 1/2 dozen. This recipe can be halved, although the amounts of yeast and warm water will stay the same.

So, that's our recipe, and it produces a lovely, light, slightly yeasty biscuit. Due to the folding, the biscuits have a distinctive appearance. They look a little like a pair of folded wings, and I've always I thought that's why they were called angel biscuits. I have sometimes used a heart-shaped cookie cutter for cutting the biscuits, because the folded heart bears a stronger resemblance to wings. However, I learned today that this is the one aspect of our recipe that is unusual. None of the other recipes I found for angel biscuits involved either dipping the cut dough in melted butter or folding the biscuits in half.

The variations in other recipes fell into several categories:

1) Chilling the dough: After mixing the dough, some recipes say to cover and chill for at least an hour. One recipe states that the dough should be prepared the day before the biscuits are baked. Some recipes state that the dough may be kept in the refrigerator for up to 10 days, so that biscuits may be made in small quantities as desired. Imagine! Angel biscuits on a weekday morning! This seems almost too good to be true, but I'm willing to give it a try.

2)Rolling the dough: All of the other (unfolded) recipes I found call for rolling the dough out to 1/2" thick. Of course, if you fold 1/4" thick biscuits in half, as per my family's recipe, well, you do the math.

3) Rising: Some recipes call for immediate baking. Others call for covering the cut biscuits with a dishcloth/waxed paper/plastic wrap and allowing them rise for anywhere from 30 minutes to 2 hours. (Two hours? If they're going to take that long, why not make yeast rolls? That's taking the "quick" out of quick bread!) Recipes suggest that, after the specified amount of rising time, the biscuit dough should be "puffy" or "almost doubled in size." Most recipes also call for lightly greasing the baking sheet; it should go without saying that dunking the whole biscuit in melted butter obviates the need for greasing.

4)Baking time and temperature: specified temperatures varied between 400 and 450 degrees, and times varied between 10 and 20 minutes. Obviously, "until browned" means different things to different people.

As I have only used my family recipe, I can't speak to the results that you'd get from any of the above variations. However, I'm planning to try some of them, especially the refrigerator biscuit version. (I still can't get over the idea that I could have angel biscuits on a weekday, before going to work!)

There you have it: all I know about Angel Biscuits. Oh, just one more thing: they don't keep well, so eat 'em up while they're fresh. And Mason, if what you really wanted was the recipe for the yeast rolls that my sister made for Thanksgiving in Menlo Park, that's a different recipe. I don't have it, as I don't make those rolls, but I can certainly get it for you.

Another Furlongstone

2004-12-18T13:07:00.000-08:00

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!

2004-12-16T10:52:00.000-08:00

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.

36 Hours and counting

2004-12-14T20:46:00.000-08:00

It's less than 36 hours now before my appointment to have the stomach tube pulled!

I'm excited, but I'm also a bit anxious. I don't have very good memories of my first visit to the Interventional Radiology department, and so, while I'm confident that the extraction procedure is simple and easy, I can't manage to convince my back-brain. That's the part that remembers being in pain, and drugged, but not drugged enough to either stop caring about the pain, or miss the seeming disorganization and unpleasantness of the staff. It really doesn't want to go back to that room, and it's allied itself with the instinctive resistance one feels to having something long and snaky pulled out of one's gut. So I am aware of some emotional "static" at the thought of going there Thursday morning.

I'm not, however, worried about being able to nourish myself after the tube is gone. In fact, tonight I had a small baked potato! I couldn't manage the skin, but the yummy yellow inside got swallowed fine. Perhaps the butter coating helped. Afterwards, I had another bowl of the congee, or rice porridge I made the other night. It was so much like eating that, when I went later to make my IBP it felt like I was just making something to drink, and not a "meal". Just another sign that I'm moving away from being constantly worried about feeding myself.

I've also made some progress with swallowing small pills, but it's a haphazard process. I haven't yet figured out a reliable technique. Still, the pills are getting down, if not always on the first, or first few tries.

My swallowing toward the end of last week was being bothered by a sore throat, which I connect to the development of a new abcess, approximately where I emitted a staple a while back. Over the weekend the inflammation went down, and my sore throat went away, but the lump remains, and no staple yet. I'm keeping it under observation, but it does feel just like the staple eruption, and not like any Other Thing. I'm planning on getting it checked out when I'm at the hospital.

Since Saturday I've been wearing yet another bit of acupuncture style in my ears. I've graduated from magnetic BBs to itsy-bitsy things Dr. Lu called staples. I have one in each ear, inside in a place where I can't see them, and they are covered with an adhesive covering, so Kimberly can't see much either. They feel like very tiny lumps smaller than the BBs, and if they are poking into my ear cartilage, it isn't very much. I can't feel them, and can only hope they are aligning my chi properly when I press on them while swallowing. I expect they'll be gone after tomorrow, when I have my next acupuncture session.

I'm taking it as a sign of my further recovery that I'm actually finding a bit of interest in holiday preparations. I put up our outdoor lights, and the electric candles in the upstairs windows. Today I actually packed some packages and endured the line at the Post Office. I even was at the mall this weekend, and, while I didn't buy any gifts, I also didn't freak out at the crowds, the stores selling hideous junk to people intending to give it to a loved one, or the cell phone booths that seemed placed every 50 feet. I've even had some real ideas for what to get for people this year. And it isn't even the 15th! (for a few more hours, anyway.)

As usual, Kimberly and I will be flying to Houston for Christmas. It will be interesting comparing this visit with our visit at Halloween. I won't be carrying around a pump this time! I'll be able to have something to drink on the airplane. And the tube won't leak, because it'll be gone!. And I won't have to go off to hook up my bag, or figure out how to schedule tube feedings around family activities. It'll be a lot different, and much, much nicer. Oh, and I'll be able to use that luggage space for presents instead of pump supplies!

That's it for now. I'll post an update on the tube extraction on Thursday.

Fun with Medical Billing, # I've lost count

2004-12-09T21:36:00.000-08:00

Hello, family and friends of Paul and Kimberly, and welcome to another episode of Fun with Medical Billing. Perhaps you thought that our show had been cancelled due to a lack of new material; that's certainly what I thought. As it turns out, that assumption was incorrect. Sadly incorrect. Frustratingly incorrect. And so I'm here to tell you all about it.

But first, a little back story: Our firm's medical insurance policy comes up for renewal each year on the first of October. In early September, I learned that the folks at Group Health Uncooperative were going to make changes to their insurance plans, and that the plan under which we had been covered would no longer exist. Instead, they had several new plans from which we could choose. Our office manager reviewed plan benefits and premiums with a GH minion, and found that there was a policy that was very similar to the one that we had. And the monthly premiums would be lower! But wait, the out-of-pocket limit (OOPL) would be higher. In network, we would pay $500/year more before reaching the OOPL. For out-of-network providers, such as Dr. Futran and the UWMC team, the OOPL would be $1000/year higher than the old OOPL. (Lower premiums and higher limits are a way of adjusting coverage so that those who need lots of health care pay more than those who don't. But the politics of health care are not my topic for today.)

For the first nine months of the year, Paul and I had paid for the old medical insurance policy. We paid the higher premiums, and, as you saw in a previous episode, we hit the $4000 out-of-network OOPL before the end of February. What, I wondered, would happen when we switched to the new policy, which had an additional $1000 dollars of OOPL? Given Paul's CAT scans, doctor appointments, physical therapy and such, he might incur an additional $1000 in payments by the end of the year. (With 60% out-of-network coverage from Group Health, it would take only $2500 of medical charges to reach that point... and it's amazing how quickly one can rack up that amount.)

I asked our office manager to contact Group Health and discuss this issue with them. She did, and was told that this would not be a problem, as the payments that we had made for the previous "plan year" (October to September) would be applied to this calendar year (January to December). Does that sound a little odd to you? It did to me, too, but that's what she had been told, and I accepted it. OK, now we're all caught up.

So, imagine my surprise when, a couple of days ago, we received an Explanation of Benefits form for one of Paul's physical therapy appointments, and it showed an out-of-network OOPL of $5000. And $100.20 was shown as "your total responsibility". Better yet, $10 was indicated as a copay, because, oh, I forgot to tell you, the new plan has copays... and copays are not applied to the OOPL.

You will have to imagine for yourselves the words... no, the epithets... no, the flat-out cursing that was heard in our house on top of Queen Anne hill, because this is family programming and I don't say those words here (here being in cyberspace, at PvTSM, not here where I am physically). Well, I use them only very occasionally, and today is not one of those occasions. However, that day was one of those occasions.

I have yet to contact my friend... what was her name?... Marcie! my friend Marcie at Group Health Uncooperative to discuss this, as I have not yet had a chance to discuss it with our office manager. (I hope that she has the name of the GH minion with whom she discussed this.) And I've been trying to figure out exactly what to tell Marcie that I expect, what makes sense, what is "fair."

For the first 3/4 of the year, we paid higher premiums, and had the lower OOPL. For the last 1/4 of the year, we've paid lower premiums. If we are going to have a higher OOPL for the last 1/4 of the year, it seems to me that the increase should be prorated for the percentage of the year in which the new plan has been in effect. Rather than raising Paul's OOPL by $1000 to $5000, I would be willing to accept their raising it by only 1/4 of that, or $250. Barring that, I want a refund for nine months of the difference between our current premiums and our old premiums: $52.64 x 9 = $473.76.

Before I mention to anyone at Group Health that we're willing to consider paying anything more for Paul's health care this year, I want a letter from Group Health stating their policy regarding changes in health plans (and premiums and benefits) during the middle of a calendar year. On the letter, I want the signature of a person who has sufficient rank to do something about this, and the direct line at which I can reach that person. I also want a pony, delivered personally by Santa Claus. However, Santa Claus probably won't care if I send him a letter stating that my attorney will be in touch if he doesn't deliver.

Well, folks, the resolution will have to wait, as we're out of time for tonight. Tune in again next... well, who knows when. That's part of the hilarity of Fun with Medical Billing. Thanks for watching our show.

Ear BBs and capsules

2004-12-07T22:06:00.000-08:00

Today I spoke with Carol at Dr. Futran's office, and she is starting the process to get me an appointment for pulling the tube! The Interventional Radiology Department, the same gang of louts that installed it, has the responsibility of pulling it out. It should be sometime next week; I expect to hear tomorrow or the next day.

Meanwhile, my swallowing continues. Each day it seems to be getting a little better, so that the amount of coughing and other odd noises is reduced. I'm finding a bit easier to start up in the morning, and it seems like maybe more of my throat is getting involved in the swallowing. Yesterday I timed one of my IBPs, and it was around 18 minutes, start to finish. I've gotten to the point where I'm comfortable enough about my diet and my ability to swallow that I've actually stopped keeping a daily record of my calories. This is another part of my moving away from being a patient. Normal people don't have intake records.

My work with Dr. Lu is progressing. I noticed a definite alteration in my state of consciousness during the appointment after my last post. I wasn't jazzed or accelerated as I had been at Bastyr, but I definitely had a moment where it felt like something shifted, a feeling akin to when I've felt before as various drugs kicked in. Though I was a bit spacey, that was actually reassuring, since it made me feel like something was actually happening.

During the next appointment, I actually felt a momentary change in the way my throat felt. For reasons I don't quite understand, my swallowing problem feels like there is a lump in my throat, on the right-hand side. While this isn't really what you see on the fluoroscope, that's how it has felt. On Saturday, as I was lying there, I felt the "lump" shift. It felt somewhat like it was dissolving, or melting, and shifting down, so that a part of my throat that had been blocked felt open. That feeling went away after a few moments, but it was very exciting while it lasted.

At the end of my appointment, I got homework. Dr. Lu painstakingly applied small adhesive dots carrying a tiny magnetic BB to four points on my ear. These points apparently correspond to the throat. My assignment is to periodically squeeze or tap these dots to stimulate these points, while swallowing. This is supposed to help remind my throat muscles of what they are meant to be doing. It may be actually influencing my gradual improvement, and at the very least it gives me something to make me feel like I'm working hard on getting better.

I've avoided further investigations into the combination of fish oil and chocolate. I've tried swallowing some of my pills, which has worked reasonably well, although I find crushing them still works better. Today I was adventurous and tried swallowing some of the small capsules of CoEnzyme Q-10 that I used to mix with the fish oil. I'm happy to say I got them down, but I wouldn't say I have a practiced technique. Q-10 is a nutrient that seems to help people with heart failure, and, though optional, I find it does improve my energy levels. It's nice to be able to take it without putting it through the tube, and without having fishy chocolate.

Another feature of my new eating regime is that I often go several hours between meals, which means I actually get hungry! Last night, I was sitting around in the evening, and I realized I was actually hungry, and I wanted something more solid than another IBP. I made myself a little rice, which I was able to swallow as well. I got the pleasure of actually chewing on it, and though it was a bit tricky, I swallowed it down. Imagine, feeling hungry, going into the kitchen and making some food, and then eating it! What an amazing thing.

Are you with me, Dr. Lu?

2004-11-30T16:57:00.000-08:00

Tomorrow morning is my third appointment with my acupuncturist, Dr. Lu. (His MD is from China, so technically, I don't think he is a "Dr." in this country, but that's what he calls himself. Being a fan of Steely Dan, I couldn't pass up the lyrical allusion.)

Dr. Lu is a nice, fairly young man. His office is a 5 minute drive from my house, just on the other side of the Aurora Bridge (that's the one the troll lives under.) He seems to know what he is doing, although I haven't had any dramatic improvements following the first two treatments. Unlike the people at Bastyr, he uses points in the ears, as well as the hands, feet and throat. Since Dr. Lu teaches at Bastyr, and there was a chart of ear points on the wall there, I assume this says something about the complexity of ear points and the ability of the student who was working on me, and isn't some doctrinal dispute within acupunture. But what do I know?

Other differences with Dr. Lu include the fact that he keeps me toasty warm, covering me with a blanket and sometimes shining a heat lamp on my bare feet. And, while at Bastyr I had the sounds of cars on 45th Street to listen to while I lay there, Dr. Lu plays some nice, innocuous classical music. Both times I have left his office feeling both relaxed and "well" in a way I usually don't, and not stimulated or buzzing as I was after my first treatment at Bastyr.

The impatient Westerner in me is wondering how long I should wait for more dramatic results. I do understand that this is intended to be a gradual means of treatment, and Lu did say he thought it might take 10-12 sessions. However, I'm empirical, and since my senses are not trained to perceive my chi flowing more smoothly, I'd like something else to change, so I know something is happening.

In fact, the only dramatic change in my condition over the last few days has been the re-emergence of swelling around my jaw. This had pretty much gone away, and stayed away for a while, during which time I'd stopped doing massages to push lymph around, and hadn't stretched my chest or anything. I think it's getting better after a couple of days of periodically doing lymph massage, but it's annoying. I'll be talking to Lu about it, also, since he is working on things circulating around my body. Maybe he did something.

In other news, yesterday I finally took all my meds in by mouth. This includes the capsules of fish oil that I take for the omega-3 in them. Previously, I've been draining the gelatin capsules through a pin hole, and injecting it through the tube. Last night, I tried mixing it with my Instant Breakfast drink.

Let's just say there is a reason why there aren't more recipes involving fish and chocolate. The two flavors don't mix well, and sadly, the chocolate didn't have the power to hide the fish oil's flavor. Tonight, I think I'll try downing the fish oil by itself, and having the chocolate later. Ah, such fun we have here at the Swallowing Lab!

I did have a more successful outcome this morning, when I tried swallowing my smallest pill whole. It appeared to go down OK, though it was a little hard to tell at first. It's small enough to get "lost" in the regions of my mouth where I don't have good feeling, or to be stuck without my quite noticing, a mere 8mm long by 4mm across at its widest point. Tomorrow I'll try the next largest, 10mm long by 5mm wide. (I notice that one is scored, so I could cut it in half if necessary. I'll try it whole first.) Then I'll work my way upwards in size. (Of course, the fish oil capsules are the largest thing to swallow.)

Undaunted by such minor adjustments, I today placed the call to Futran's office about getting the tube taken out. I had to leave a message, so I don't know what's involved. I seem to recall being told that the actual removal procedure is very simple, like just yanking the tube out. Just why this wouldn't leave a hole leaking gastric juices into my abdomen is beyond me, though. Perhaps some clever surgical trick causes the hole to seal up automatically? Or maybe, to a surgeon like Dr. Futran, the stiching involved isn't enough to be worth mentioning? I also don't know if they'll make me jump through hoops like another barium swallow first. I really hope not. I should think the fact that I'm doing fine after nearly two weeks should be enough.

I will be happy if I have the tube out by Christmas. I will be very, very happy if I'm able to eat some more-solid foods by then. With enough attention from Futran and Lu, and my own work in the Swallowing Lab, I have my hopes. But, one way or another, I'm saying right now: no figgy pudding.

Nine month report

2004-11-27T23:45:00.000-08:00

I realized just a little while ago that it has been nine months since Paul's surgery.

Last month, as I'm sure you noticed, we completely forgot to write up the eight month report. We were focused on other things, which I'd say was a positive sign. (OK, maybe not all sweetness and light, but positive none the less. Paul was dealing with a lot of fears about how things would go on the trip to Houston for my father's 70th birthday party... but he did deal with them.)

Today was Paul's 10th day in a row of eating by mouth. His diet is pretty monotonous: chocolate instant breakfast (with or without coffee), various juices, broth and nuts. (This weekend my diet has been monotonous, too; tonight was my fifth meal of turkey, dressing, sweet potatoes, cranberries, etc. in three days. I will note that this has been entirely my choice. Yum.) He says that, after "waking up" his swallowing in the morning, it seems to work better if he doesn't think too hard about it. However, if he doesn't think about it at all, he sometimes takes too large a swallow, and ends up coughing and/or clearing his throat a lot.

(Having Paul's father and my parents here this week had made me aware of how accustomed I've become to a certain amount of this coughing and throat clearing. When Paul first started trying to swallow, I'd check to make sure he was OK whenever I heard him cough. Now I only do so when it sounds to me like he's really struggling... and usually he's fine. When Paul was taking the first couple of bites of squash soup for Thanksgiving dinner, and having a little trouble with the texture, our parents paused at every cough. I asked if he'd like me to thin the soup, and when he said no, I continued eating. I worried that perhaps I appeared unconcerned, but I know that having his every swallow and cough monitored doesn't help to him relax and let his throat do its thing.)

During the past few days, Paul has alternated between taking his medications via the tube and by mouth. When taking them by mouth, he pulverizes them as for the tube, and mixes them with his morning IBP mocha or juice. He says that they add a somewhat bitter flavor, which is masked more effectively by the coffee in the mocha than by anything else. The evening meds are more complicated, as they include some oils that don't easily disperse in water-based liquids. So it will still be a little while longer before the whole procedure is worked out, and he can have the tube removed. And, of course, Dr. Futran and speech pathologist Marie will probably have something to say about that, too.

As part of the Thanksgiving celebration on Thursday, Paul removed the poles for hanging enteral feeding bags from our living room sofa, his office, and our bed. He put away the pump, the poles, the bags, and cleared almost all of the paraphenalia for same off the dresser in our bedroom. With the exception of a few bottles of pills and the syringe used for putting meds in the tube, all things medical have been banished from our bedroom. And today we moved Paul's beautiful cherry Morris chair out of our bedroom, and returned it to its proper place in the living room. Our bedroom looks like a bedroom again. For this, and the recent improvements that have made it possible, I am very thankful. As it is almost midnight, I'm going to join Paul for some sleep... which, for him, is already in progress. I'll let him fill you in on acupuncture and more tomorrow.

Thanksgiving

2004-11-26T10:36:00.000-08:00

Thanks giving started with my first thoughts yesterday morning.

1. I made it.
2. I'm waking up next to Kimberly.

There were many more after that, but those were plenty big enough.

The celebration day itself, while a far cry from my more typical full-bore feast day, was still quite wonderful and satisfying. My father drove up from Oregon, arriving on Tuesday, and I picked Kimberly's parents up at the airport on Wednesday, so we had family to share the day with us. The weather was gray and wet, which made sitting inside by the fire all the better, and working in a warm kitchen quite cozy.

My menu consisted of turkey broth, winter squash and apple soup, and apple cider for dessert. I'd made the turkey broth myself, and did a fine job, if I do say so myself. It was quite tasty, and required no adjusting of the seasoning. Kimberly oversaw the preparation of the squash soup, including her first chance to drive our new wand blender. She approves.

The solid food eaters had the squash soup, turkey, cranberries, sweet potato, sauteed greens, gravy and other stuff I didn't pay attention to. They seemed to like it.

Since I normally work really hard on Thanksgiving, I was somewhat looking forward to taking it easy this year. The compensation for not being able to eat all that food was that I wouldn't have to cook it, either. This expectation led to me being quite bewildered when I found myself hard at work in the kitchen. Apparently, that same odd brain lesion that keeps Kimberly from being able to learn how to use the espresso maker also impairs her ability to prepare turkey for roasting. The human brain is fascinating, isn't it? Since the plan was to use a "cooking bag", a technology that only I have experience with, I altruistically stepped in.

I still got something of a break, since instead of a full bird we were only doing a turkey breast. That made cleaning, handling and prepping much easier. It also gave me the chance to use my favorite Thanksgiving toy, the dual-readout digital electronic probe thermometer, which shows both oven and meat temperatures and adheres magnetically to the outside of the oven. (I did just see a picture in a catalog of a similar device with a wireless display, so you can sit in the living room and check the bird's temp, which is a near-perfect hybrid of kitchen-gadget lust with nerd-gadget lust. If only it connected with my computer via 802.11g, so I could graph the rise in temperature, and perfectly predict when it would be done. Maybe next year.)

I also somehow ended up making the gravy. I guess this is what comes of being in charge of these things for so long. I had a taste or two of it while cooking, to check the flavor, but didn't end up trying to have any at the meal. I decided that the very thing gravy is designed to do, be somewhat thick and sticky, would be just the thing that would make it hard for me to swallow. I ended up thinning the squash soup with more broth for that reason, after having had trouble with it at first.

I flatter myself by believing the claims from the solid-food eaters that both the turkey and gravy came out well.

After the meal, and a bit of clean-up, we were all sitting around the living room quite happy, watching the fire and talking. I brought out the finally element of the Davis Thanksgiving tradition, the wafer-thin After Eight mints. I'm happy to report that the chocolate and mint filling dissolve quite well in the mouth, so that I can, with care, swallow them. And they are so high in calories that it was actually worth keeping track of how many I ate for my daily calorie total! My family was enthusiastic in supporting me, consuming their own mints so that I wouldn't feel alone in my struggle.

Perhaps it was not surprising that no one hurried to get up and go take a walk, despite the break in the rain. In fact, it was a pretty early night for everyone. One of the more pleasant features of the day, although it may seem odd to some of my readers, was that the TV was off until mid-evening, leaving plenty of room for sociability, conversation, and warm, good-food-inspired silences. My dad and I did have a "nightcap" consisting of a good British mystery in the Inspector Lynley series on PBS. No football at all; no wonder I feel out of the American mainstream.

This morning has featured some of the typical day-after chores that are so much a part of the whole process that doing them is actually sort of soothing. Cleaning the last of few pans and dishes that had to sit overnight. Running the assorted dishtowels and so forth through the laundry. Restoring the various appliances and ingredients misplaced in the heat of battle to their proper positions. My dad clambered back into his truck for the drive back to Oregon, and drove off, carrying with him one of the Alexander McCall Smith books we'd been talking about over mints. The tentative schedule for today features taking the two architects in the family to shop for a replacement for the defunct light fixture in our front hall, a pleasantly modest bit of home-maintenance and tool-using, and, of course, left-overs.

Yum.

Giving Thanks

2004-11-26T09:10:00.000-08:00

While the past year has been perhaps the most difficult of my life, I have much for which to be thankful. Most importantly, Paul is here with me. At the beginning of this year, we weren't sure that he would live to see another Thanksgiving. My parents and Paul's father joined us for Thanksgiving dinner this year. I'm so grateful that we were able to be together.

I first read the following poems while I was in college. They are two that come most often to mind when I feel an upswelling of gratitude for all the ways in which I have been and continue to be blessed.

Pied Beauty

Glory be to God for dappled things,
For skies of couple-color as a brinded cow,
For rose-moles all in stipple upon trout that swim;
Fresh-firecoal chestnut-falls, finches' wings;
Landscape plotted and pieced, fold, fallow and plough,
And all trades, their gear and tackle and trim.
All things counter, original, spare, strange,
Whatever is fickle, freckled (who knows how?)
With swift, slow; sweet, sour; adazzle, dim.
He fathers-forth whose beauty is past change;
Praise him.

-Gerard Manley Hopkins

i thank You God for most this amazing
day: for the leaping greenly spirits of trees
and a blue true dream of sky; and for everything
which is natural which is infinite which is yes

(i who have died am alive again today,
and this is the sun's birthday; this is the birth
day of life and love and wings: and of the gay
great happening illimitably earth)

how should tasting touching hearing seeing
breathing any-lifted from the no
of all nothing-human merely being
doubt unimaginably You?

(now the ears of my ears awake and
now the eyes of my eyes are opened)

-e. e. cummings

I hope you all had a very happy Thanksgiving.

Four days and counting

2004-11-22T08:45:00.000-08:00

For the past four days, Paul has not used the tube for food. What does this mean? No bags of liquid hanging on the poles by the bed or the sofa. No pump making {whirr-click-click} sounds all hours of the day and evening. No smell of bleach in the kitchen from cleaning the bags for reuse. Those, and the assuaging of the fears about the tube that Paul wrote about recently, are what I would describe as absent negatives.

There have also been, inversely, present positives. (This is sounding almost Rumsfeldian, isn't it?) Paul has written about some of those as well. Yesterday was a small study in present positives. When we woke up, Paul made a latte for me, and an IBP mocha for himself. We hung out in bed, drinking our coffee, reading the Sunday New York Times, petting whichever cat came around to visit. Late morning, we got together with our friend Chris. In her new Prius, we motored quietly (the car, not us) over to the Ballard Farmers' Market to pick up vegetables for Thanksgiving, then came back and chatted at our house. Paul and I sipped mugs of hot cider. In the early afternoon, we met our friend Nina at the local Cuban coffee place. We talked and laughed, we drank our coffee drinks, Nina and I split a sandwich.

This doesn't sound like a big deal, does it? It sounds like the sort of Sunday that any number of you (well, those without young children) might have had. But that's the point. It felt like the first normal Sunday we've had since Paul's surgery, almost nine months ago. I could happily get used to this kind of Sunday. In fact, I'm planning on it.

Day Two: Success!

2004-11-20T11:15:00.000-08:00

I made it through a second day with no food via tube. 2140 calories. It's amazing what you can do with milk, vitamin/sugar powder, juice, and a handful of fatty nutmeats.

This weekend I may cross the bridge of trying to figure out the medication question. I have two very small pills I might be able to swallow straight, but I'm leery of trying. The others I am planning to pulverize and mix with water as usual, but whether to try drinking them straight or mixed with something, and then what to mix them with, I don't know. I expect they taste awful. This morning I took the easy out of putting them through the tube.

It's definitely harder to swallow in the morning. I had quite a few coughs and other trouble getting started on this morning's "mocha". However, by the time I finished it, all was working smoothly. I guess the muscle coordination needs time to wake up.

Also on the list for this weekend is some experimentation with various types of semi-solids, in order to finalize my Thanksgiving menu. (I would be quite ectastic to have mashed potatoes, but I have a feeling they may still be beyond me. Thinned to potato gruel, perhaps? We'll see.)

I'd be making that my next experimental goal anyway, even without Thanksgiving. Independence from the tube was my first target, for the reasons I wrote about last post. But there's a long way to go still before I get my long-awaited hamburger.

The Mundane and the Sublime

2004-11-19T13:17:00.000-08:00

The unannounced goal for the day was to get all of my daily calories and nutrition by mouth. I decided I'd leave the question about how to handle my various pills for a later time, and would just continue to use the tube for those. My calorie target for the day was 2000.

With this in mind, I didn't have the bag of juice that I usually use to get me started in the morning. During the hellish period of finding something that would work with my stomach when pumped through a tube, I found that juice could be used to "prime the system." Lately I've been hanging a bag first thing, which trickles in while I catch a little extra time in bed. But not today.

I got up and dealt with my morning pills as usual, crushing them, mixing them with water, and pushing them through the tube with a big syringe. Then it was off to the kitchen, where I mixed up a usual batch of my Instant Breakfast potion. It's half a cup of milk, half a cup of evaporated milk, and Instant Breakfast powder. The evaporated milk gives it more calories, so I call this an Instant Breakfast Plus, or IBP. I also made some coffee to go with it.

Only this time I didn't put it in a bag, bring it upstairs, fit the bag's tubing into the pump, and hook up. Instead, I got down one of our Big Red Cups, and poured it all in there. A quick zap in the microwave, and voila! A simulated mocha, worth 365 calories and 1/4 of my MDR on many vitamins and minerals.

The Big Red Cup, a small glass of water and I retired to my office. As I spent time surfing the net and composing rants for my political blog, I would take sips from the cup, mostly swallowing easily. There was some coughing, and a bit of mess, but it went pretty smoothly. Occasionally I would sip from the water glass, to cut through the milky coating that an IBP can leave in the mouth. Before long, it was done!

That was the first hurdle. So far, morning is when I've had the most trouble swallowing. Later in the day I'm now pretty reliably getting through an 8oz IBP in under half an hour. So, even though it was a little bumpy, I got through it, and it still didn't take as long as pumping it would have!

From there on, it was a matter of figuring out what more I could use, on what timing, to get to my 2000 calorie mark. I set a goal of three more IBPs (without the coffee extra), for a total of 1460, spread out so that the last would be a "before-bed hot cocoa". I kept a small containers of nuts nearby all day, and would occasionally nibble. (Though in my case "nibbling" is a lengthier process, on a nut-by-nut basis, while the bits get gradually swallowed through repeated attempts, and the occasional sip of water.) By the end of the day, I'd done in 1/4 cup of cashews, and 1/4 cup of peanuts, for 200 and 170 calories, respectively.

In the mid-afternoon, I started work on a bottle of Odwalla's "Mo' Beta" juice. One of the upsides of using the bags is that I've been able to ignore the taste of the various juices I've been using, and make selections more on nutritive value and calories. But I actually like the Mo' Beta taste, and it has always sat well in my stomach. I quickly polished of half the bottle, and put the rest aside, finishing it off a bit later. 280 calories.

In the early evening, I pulled out my secret weapon. A few days ago I stopped by the store for some spiced apple cider. Eight ounces in a mug, a quick trip to the microwave, and scant seconds later I was sipping away at a fragrant and tasty, not to mention quite autumnal, beverage. Not only did it provide a full range of positive reinforcement for my excellent swallowing performance, it got me another 120 calories.

If you are compulsive at addition, you may at this point have detected that I lost track of my count. I was still planning on my 365 calorie nighttime IBP. I didn't actually need 120 more calories. I figured that out later. Meanwhile, I really did enjoy having some hot cider.

My final calorie count for the day was actually 2230, and while it was some work, it was not extremely difficult. It's quite conceivable that I could repeat this, and while as a diet it would be quite monotonous, I could more than survive.

I really don't need the damn tube to keep me alive anymore.

And this is where the mundane gains its more profound meaning. It doesn't just free me from the time-sink of the pump and the bags, and the nuisance of scheduling feedings, and the longing for tastes, and the feel of something going down my throat, it also frees me from a host of other concerns.

For months, I've been carrying a fear of the tube getting damaged, a fear of it clogging up, and the horrible anticipation of getting it replaced. My memories of its insertion are among my worst hospital memories. (Drugged into semi-consciousness, in great pain from the gastric warfare the spacefood down the nose tube had wrought, abetted by the gas injected to assist the procedure, helplessly dazed witness to the struggles of the resident to place the tube correctly as he made me hold my body in absurd contortion - I never want to do that again. I'm serious. Really, really, serious.)

I've also had irrational fears of somehow dying from the tube being damaged. This is probably an echo of living with the Hickman catheter during the period of Paul vs. The Lymphoma Monster. That was actually an IV port, but it had a similar white tube with a fitting on the end, and it also emerged from my chest, only about six inches higher. This tube ran directly into one of the major blood vessels, requiring daily shots of anti-coagulant to keep it open, and painstaking injection protocol to keep from injecting an air bubble that would travel instantly to my brain and kill me. Had the Hickman been damaged, it would have started shooting my blood everywhere. You can see how I might have some stored up fears about it, which have been hovering around its cousin, my feeding tube, since March.

So this milestone is about much more than my long-awaited swallowing improvement, more free time, and ease of scheduling. It is a major, major step in my feelings of personal safety. That portion of the back of my mind that's been standing on guard against damage, against clogs, against infections, can stand down. God, that's a relief.

It's also important for my sense of identity. I don't need an artificial apparatus to keep me alive anymore. I'm able to survive on my own again. That other portion of the back of my mind that's been whispering about being an invalid and being dependent can shut up. I get to stop feeling like a patient, mostly. (I'll really stop when I don't have this tube in me anymore, and there aren't poles all over the house.)

I've already written about the fear of the "what if I can't ever swallow again" possibility. As the months went by, that one was getting harder to avoid thinking about. Now it's been replaced by its wimpier little brother, "what if all I'm ever able to eat is liquid", which is pretty easy to laugh at given my recent progress, and the fact that, really, if push came to shove, I'd get by. As personal worry-demons go, compared to the ones I've dealt with in life, it's pretty toothless.
Another degree of freedom.

I've finished another IBP while I've been writing this, my second today. (I'm going to see about two days in a row.) I realize that I'm much more relaxed, that it feels more like it's just another part of my day, and not the focus anymore. It's "eating", it's not "feeding". It's just something that happens during the day, not something I have to "do", like a chore. I had a cup nearby, I drank from it while I wrote. Now it's done. Such a normal thing to do, something one doesn't even think about. Unless one has been where I've been for the last eight months, and then it seems both mundane and sublime, and sublime because it can once again be mundane.

Upcoming attraction

2004-11-18T23:42:00.000-08:00

Coming tomorrow to the Paul vs. TSM on your very own Internet:

Read about Paul's first day of no tube feeding!!!

Yes, that's right! NO TUBE FEEDING!!!

Learn about the over 2000 calories that Paul ingested by mouth today!
.....How many calories were from cashews?
.....What kind of juice did Paul drink?
.....Was there coffee in those Instant Breakfasts?

Exclusively here! Tomorrow! In the inimitable words of our hero Paul! Be here!

I turned off that damn blinking text.

A New Life

2004-11-16T19:20:00.000-08:00

It's a cold, rainy night here in Seattle. The house is a bit drafty, and Kimberly is away at her weekly night class. I've got a log burning in the fireplace, and a warm beverage to drink, which makes things very cozy on a night like this.

What is surprising about the above picture?

I have a warm beverage to drink! I'm finally, after months of pining, again able to drink from a warm cup with enough ease and confidence that I can do it for relaxation, and all the emotional sustenance that comes with it. This is major progress that has happened very recently.

The beverage in this case is chicken broth, or, more properly, Herb-Ox Low Sodium "Chicken Broth" drink, which is even less like chicken broth than instant coffee is like coffee. Still, it's yummy, and warm, and feels good going down. What's really amazing is that I can now handle sips that are relatively normal in size. Considering that, not long ago, I was painstakingly measuring out portions of a demitasse spoon, this is like heaven. Each mouthful still takes a couple or three swallows, but I have enough control over everything that I can have that much fluid in my mouth without inhaling any. I'm not losing some down at the wrong moment, or breathing the wrong way. I'm actually, really, drinking. Like a normal person, more or less.

Even as recently as my last post, when I wrote about going to a cafe, I was having more trouble. Then I was working on my coffee, really working, more out of the stubborn desire to have had some coffee, and fulfill my longing to go to a cafe, order some coffee, and drink some, than real enjoyment. Each sip was small, and often associated with coughing and urgent use of a napkin. Now I'm in a whole different realm, and it feels really, really good.

Imagine the good feeling you get from having a good cup of coffee in the morning, a nice cup of tea, or a warm cocoa on a cold day. Imagine what it would be like if you hadn't been able to have that at all for 8-1/2 months. Imagine not really knowing whether you ever would again. And then, you get it back. That's the idea. The reality has been even worse, and is now even better, than you can imagine.

I haven't made as much progress with more solid food. But I have made a significant change in my daily routine. In the last week, I've been trying to get my primary nutrition and calories by mouth, and to only use the bag for calories to fill out my daily requirement. I've done pretty well, because this drinking breakthrough has come with an attendant ability to swallow more in each session. Previously in a day I've been having 3 or 4 8oz cups of my Instant Breakfast concoction, slowly pumped in from a bag over 1 or 1-1/2 hours each. For the last few days, I've been able to drink these! Last night, I got through one in less than 1/2 hour! This is a huge win. I've also been successful at drinking some of the puree-rich juice that I'd been using by bag. I've been able to get between half and three-quarters of my daily calories that way, and more through eating nuts.

I'm hoping that sometime this next week, I'll actually go a whole day without using my tube for food. That will be a very, very powerful milestone for me. It will mean freedom from dependence on this artificial contraption hanging out of my belly. It will be a sign that, someday, I really will be able to survive without the tube. I can't tell you how profound that shift will be for my sense of security, identity, and self-worth. I'll keep you posted.

Tomorrow morning is my next acupuncture appointment, with a new practitioner, Dr. Lu. I hope I like him, and can get set up with a program. The temporal relationship of my first treatment and my current drinking breakthrough has not escaped my notice, and while I'm not sure there is causality, I'm not ruling it out. I got my treatment on Monday, and by the weekend I was swallowing far better. Let's see what Dr. Lu can do! Maybe I'll be able to have more than turkey broth, gravy and squash soup for Thanksgiving! Not that I haven't been working really hard this week at swallowing as much as I can - acupuncture doesn't get all the credit.

OK, now it's time for me to go enjoy the fire and work on a fourth Instant Breakfast drink. It makes a reasonable substitute for hot cocoa.

Cat bliss

2004-11-13T22:15:00.000-08:00

Sergei adores Paul. His favorite spots are on top of some part of Paul's body (usually legs or chest), holding onto Paul's clothes (note extended claws), while Paul rubs on him. Serg likes to be patted and massaged vigorously. Tonight, I could hear his purring from across the room.

Some more news about Paul

2004-11-09T20:04:00.000-08:00

In our last episode, our hero was about to return from Houston and get a flu shot. The returning from Houston went OK, except for the long delay due to bad weather in Houston. As a consolation, I got the new experience of seeing a lightning bolt out the window of a climbing airplane. It's about as fun as you'd imagine, particularly when combined with the bouncing from turbulence.

Not surprisingly, by the time we got in late to dark and rainy Seattle, I decided I'd postpone the flu shot for a day.

So, Tuesday I got up bright and early to head over to the flu shot clinic. Because flu hits Puget Sound later than many places, Group Health hadn't started giving out any shots before the shortage was announced, and they immediately restricted their supply to high-risk patients. They also decided to deliver them only at the pre-scheduled clinics, to save their doctors from being deluged with phone calls. The one on Tuesday was only the third opportunity in Seattle, and one of the first across their system, so I felt pretty confident of getting a shot. Still, I wanted to arrive early and beat the crowd.

I was smart. Though they were well prepared for large crowds, with ribbon-stanchions and security guards, and lots of clipboards pre-stocked with the forms, I breezed right in, filled out and signed my forms, and sat right down for a shot. I was in and out in 15 minutes! That dismissed a small, but very annoying, worry from the back of my mind.

Then I went over to my polling place to vent my displeasure at the administration for bungling the flu vaccine situation, and so much more. I think we know how that went, which somewhat explains my problems with posting this past week. I'm still working on coping with it. I've pretty much decided to stay and fight, but that didn't stop me from just now reviewing the text of the 14th Amendment to see if it really does prevent succession. (I think it could easily be argued it doesn't, if it's viewed as a dissolution of the United States, rather than states leaving the United States. So a Czechoslovakia-type split could be legal. I think one side or the other would get fussy about wanting to keep the tanks and nukes, though, and then, watch out. And the picture of the hordes streaming each way before the India/Pakistan split gives me pause; all those midwestern Kerry supporters having to pick up and move to blue states wouldn't be pretty.)

By Sunday I'd recovered enough to venture out to a nearby cafe. I'd arranged to meet a prospective coaching client, but what really makes it historic is that it was the first time I'd been in a cafe since the surgery. I actually ordered a coffee drink, and, over the next couple hours, carefully sipped up part of it! This was quite momentous, because for months I've wandered past Seattle's many espresso vendors with a longing gaze, feeling outcast and ghostly, barred from my past life and condemned to wander coffee-less. I have now re-materialized in the mortal realm. (The drink was a "Yanqui", which is the whimsical name this Cuban-inspired cafe uses for what other places call an "Americano", which is espresso diluted with boiling water to regular coffee cup volume. This provides coffee with a yummier, stronger flavor than plain drip.)

Yesterday I had my first acupuncture treatment. That was quite a thing. Though it began with discovering a bit of bureaucratic snafu, the visit itself was quite good. I was visiting Bastyr, which is a school of Naturopathic Medicine here in Seattle. My appointment was for their Acupuncture Clinic, where students in the final stage of training work under the supervision of a licensed acupuncturist.

I'd chosen Bastyr because they have a good reputation locally. Seattle is a place where acupunturists are thick on the ground. The challenge isn't finding one, it's finding the right one. An embarrassment of riches. Bastyr became my choice because they could give me an appointment fast, and I felt they were reliable, so I could see what it was like. I'll probably go for continued treatments with someone else.

I spent a long time reviewing my history with the senior of the two students, and then watched as he recapped it to his supervisor, with some additions from me. The supervisor, a comfortingly Chinese-looking woman with the last name Yang, asked me some more questions, and examined me, with the student duplicating her. This involved feeling my pulse in each wrist, and looking at my tongue. I realized I was in a different medical tradition when she commented to the student "I get "slippery" on this side," and they discussed the difficulty of finding the third kind of pulse on my left wrist. The names of the pulses were to-me-nonsensical Chinese syllables. Ms. Yang told me that they could help me, but that it would be gradual and take a number of sessions. She said that, in addition to the swallowing, they would be working on my whole system, since this experience has left me worn down. I agreed.

They all left the room to discuss specific treatment, while I changed into a typical hospital gown, and lay on a typical hospital exam table. When they returned, the student took lots of time to show me how thin the needles were, and explain how they don't hurt much, or at all. I guess there are many first-timers who are more apprehensive than me. I just wanted to get on with it!

I had needles stuck in both feet, both lower legs, my hands, and neck. When inserted correctly, the main sensation, if there was one, was a sort of dull, nonspecific "pressure". Once or twice there was a sharp pain, but that was a sign that the needle needed adjustment, and quickly stopped once he got it right. I was surprised to notice that sometimes inserting a needle in another place would change the sensation at a previous site. That was my first indication that there was something actually going on.

Supervisor Yang was called back in to consult on how to handle the fact that a site on the bottom of my chin was right where my surgery scar is. They decided they could stick me a bit to the side, and angle the needle in to hit whatever it is they needed to hit. And so they did, leaving me with about 8-10 needles in. I don't really know the exact number, since I wasn't counting, and they really weren't noticeable. As I lay there on the table, I did have a strange sensation, which I described as a "tide" washing through my body. It wasn't dramatic or scary, but it didn't feel like I was imagining it, either.

They came back after about 7 minutes, and started taking the needles out. I felt good. As I changed back into my clothes, I realized that I definitely felt different. I felt looser, and more energetic. It was very interesting. I left the office quite conscious of a feeling of being "altered", that I felt somewhat "hepped up". My muscles wanted to move, and I shook my shoulders, back and arms as I walked. On the drive home, and for some time after, I definitely felt like I'd taken a stimulant.

I can't say I'm surprised, since I'd gone in figuring millions of Chinese over hundreds of years probably weren't all imagining it, but it's another thing entirely to have a visceral, physical experience of it, a dramatic change in the way I felt caused just by a few hair-thin needles. I did have the thought that, after so much time spent in the bowels of the Western medical system, it was really odd to be so ignorant of what was being done to me. Is this what less educated people experience when they go to the regular doctor: a bunch of nonsensical words, motions and treatments that don't have any context, but seem to make you feel better? Weird.

I'm not noticing a change in my swallowing, but I wasn't expecting to. But I do really think that there is a possibility that this technique will be able to get a handle on it, and the Western MDs have thrown up their hands. That's very exciting, and I'm willing to let it take a while, as long as we're working on it. I'll keep you posted.

Max and the birthday cake

2004-11-06T13:23:00.000-08:00

Max likes cake. Max really likes cake. Max likes cake so much that, knowing there was a birthday cake for my father, he did not want to eat any lunch at my parents' house. He just wanted cake. For two days in a row.

This was the birthday cake's second day (which explains why there's only half a cake left). However, as it was a birthday cake, candles were obligatory. There were seven candles, because at this point, one per decade is about enough. Max likes blowing out candles almost as much as he likes cake... enough so that, on his last birthday, he wanted to blow out the candles more than once. So Max helped Dad with the candles. And then we had cake.

Mmmmm.... cake is good.

Hungry little bird

2004-11-06T01:04:00.001-08:00

Our nephew Reed is not a picky eater. At times, he reminds me of a baby bird, reaching up to get whatever the mother (or grandmother) bird brings back to the nest to drop into his waiting mouth.

This was one of those times.

It's interesting, and rather unusual, that the plumage of the female (grandmother) bird is identical to the plumage of the baby bird. I've been told this was unplanned.

(Sorry Mom.)

It was a dark and steamy night...

2004-11-01T17:49:00.000-08:00

... in Houston, and it was Halloween. So, despite the heat, all sorts of small creatures - beautiful and gruesome, scary and sweet - were out and about, gathering candy from appropriately admiring and/or frightened adults. Along with the candy came blasts of chilled air from doorways. Parents in t-shirts and shorts (and at least one aunt and uncle in inappropriately Seattleish clothing) watched from the sidewalk, and offered needed encouragement. "Knock on the door... good... now say Trick or... what do you say now, sweetheart?... watch those steps..."

Our nephews were big cats for the evening, Max a lion and Reed a tiger. Sadly, their fleecy costumes were better suited to traditional, autumnal Halloween weather than last night's heat. Reed threw his headwear on the ground within minutes of going outside, but Max kept his on through the first block of houses.

Also trick-or-treating with us were the three children of some friends. Their twins, a girl and a boy, are a couple of months younger than Max, and their daughter is a five-year-old, blonde, blue-eyed beauty. Max has thing about blondes. And a thing about "older women". Put the two together, and we're talking full out adoration, as evidenced in the photos below. Luckily for Max, this pretty little princess likes cats... even fleecy ones with damp, slightly grubby paws.

My long week

2004-10-31T08:44:00.000-08:00

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.

Helloooooo....

2004-10-30T13:23:00.000-07:00

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.

Hey!

2004-10-20T13:21:00.000-07:00

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?

2004-10-17T10:23:00.000-07:00

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.

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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

2004-10-15T23:23:00.000-07:00

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

2004-10-14T19:43:00.000-07:00

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

2004-10-13T18:15:00.000-07:00

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

2004-10-08T21:32:00.000-07:00

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

2004-10-07T21:53:00.000-07:00

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.

Forty-five

2004-10-05T00:15:00.000-07:00

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.

Today's Vocabulary Word

2004-09-30T20:11:00.000-07:00

Today's vocabulary word is "hemoclip." A hemoclip is a metal clip, manufactured in various sizes, for the purpose of clamping off blood vessels. It has the advantage of being faster and easier than tying them off, (although I'm told they still do tie off some vessels).

This morning when I showed my metallic trophy from Solo Home Surgery to Dr. Futran, he said, "Oh, yeah, that's a hemoclip." As if it was a most ordinary thing. Which, I guess, it is for him, since he probably goes through a case of them a week. The one I have is pretty small, although there is a smaller size that they use "under the microscope." He allowed as how I'm probably carrying more of them, and smiled as he said it. Apparently they sometimes come loose, and can work up through the skin. I wasn't sure how I felt about having still more metallic bits in me. It did make me think back to that Chemistry class figure for how much the elements in the human body are worth, especially when he said the itty-bitty one in my hand probably cost $1 (titanium, y'know.). My "parts value" is higher than I realized, though I certainly hope it's a long time before we're selling me for parts.

The rest of the exam was straightforward. From his perspective, having last seen me some months ago, I've made a lot of progress, and my speech is much better. We did arrange for another appointment with Marie, queen of speech and swallowing. The doctor's inspection of his handiwork, poking around my mouth and feeling my neck, elicited many positive noises. The one possible concern was a small bright spot on my CT scan from Tuesday, which he will be reviewing with his favorite radiologist. He said the guy who read it already sometimes "sees things", implying that he makes note of things that aren't actually a problem. When we were talking about my recent infection, he said that might account for the spot on the CT. In any case, he didn't think it was anything to worry about, based on the location, and the nature of the spot on the film. So I'm not worrying about it. (He also didn't feel anything when he was feeling my throat.)

I also told him that I've been getting some change in the feeling of my mouth and jaw, which may be nerves regenerating. He wasn't surprised, and seemed to think that was right on time. (I describe the change as a "different kind of numb", one where I have an improved sense of where things are in space, like where the edge of my tongue is relative to the base of my jaw.)

So I go back in three months. I hope to be swallowing by then, so I can have a coffee while I wait for the Doctor to get back from the OR. (Our appointment today was at 8am, which is way too early on my current sleeping schedule. Ugh.)

Seven...

2004-09-27T21:36:00.000-07:00

...is the number of months since Paul's surgery. Here's where we are today:

Psychological news: I am pleased to report that I am in a better place psychologically than at this time last month. I attribute that at least in part to Dr. F, the new psychological professional in my life. Paul says that he's not sure whether he's feeling better than he was a month ago, but I think that I see some improvement in his mood, and he has told me that he feels better after sessions with Susan, his therapist.

Physical news: The "pouch" of swelling on Paul's jaw has definitely changed; it is softer, smaller, and almost entirely below his jawline. Some of the reduction in swelling seems be a result of the drainage following Paul's Home Surgery last weekend. A large part of the "paramecium" on Paul's arm is almost the same color as the adjacent skin. Physical therapy continues to loosen scar adhesions in his neck and arm, and increase his flexibility and range of motion.

Swallowing news: As of 10:00 pm, Paul has ingested approximately 550 calories by mouth today. He has eaten cashews, Cheerios, sunflower seeds and ice cream. No, it's not a complete, well-balanced diet, but we're going for whatever works right now. That's 1/4 of the calories that he needs each day, so he still has a ways to go, but it is progress. It's still a very slow process, and is not eating and swallowing as you and I know it. Still, the less time he has to spend hooked up to {whirr-click-click} the pump, the better.

Day-to-day news: Today Paul and I went to the "See Center," the cutesy name for Group Health's Optometry Clinic, to pick out new glasses for Paul. He tried a number of frames, which ranged from bad to giggle-inducing. (I will confess that I selected the frames that made me laugh.) We eventually managed to find a pair that work nicely with the shape of his eyes and eyebrows and the planes of his face. They'll be ready next week; I'll post photos then.

Paul has a busy day tomorrow: a CAT scan (prior to his next follow-up appointment with Dr. Futran on Thursday), an appointment with his physical therapist, and an appointment with his emotional therapist. And me? I'll just be going to work.

Not gruesome, curious

2004-09-26T14:20:00.000-07:00

Gruesome was the word that Paul used. No, not to describe the Solo Home Surgery he performed last Friday night. Gruesome is the word that my loving husband used to refer to me, when we talked about the "procedure" on the phone last weekend.

I called to see how he was feeling, and he told me what he'd done. I'd thought of suggesting that he or I lance the soft, apparently-fluid-filled area before I left town, but I didn't think he'd be inclined to do so. I told him that I wished I'd been there when he did it. Laughing, he said, "You're a strange and unusual woman, Kimberly." Then I suggested that he write a blog post about it. He was initially reluctant. "Not everyone is as gruesome as you are, sweetie." Gruesome? Not exactly the word I would've chosen to describe my fascination with things medical, my desire to see what happened. Weird, atypical, odd... I'll cop to any of those.

However, the word I would choose to describe myself is curious. Among the synonyms for "curious" in my handy online thesaurus are: inquisitive, interested, unexpected, unconventional. Being "curious" has served me well throughout this entire medical adventure. Having an interest in medical science, and what I gather to be an unusual lack of squeamishness, made it possible for me to absorb lots of information about Paul's disease and its treatment, and to tend to his surgical wounds.

When I left town last Friday morning, Paul's jaw was swollen, red and puffy. When I returned home Monday evening, there was only a small opening in the skin where he had drained the abcess, and a tiny bit of staple on the bathroom shelf. Now don't get me wrong; I'm really glad that he's all better, and that the staple is out, rather than still in. I just wanted it to be, as Laura Mé suggested, "Pas de Deux Home Surgery". Is that really so strange?

Medical update

2004-09-20T22:40:00.000-07:00

Apologies for the delay in getting this posted. I was busy having a wild bachelor weekend. ;-)

Thursday, when I went to get my swelling looked at by a trained medical professional, I was showing odd, lumpy swelling in an area that had previously just had a broader, even swollen quality, and some skin irritation. That morning the skin had started to feel warmer than normal. I really wanted some trained person to take a look, feel around, and tell me that the odd lumpy bit was not a (minor organ chord) Lumpy Bit, in the sense of the internal lumpy bit that started this adventure. Carol, the nurse practioner, told me it was probably an infection of some kind, which sometimes happens, and what I was experiencing didn't seem like the way most recurrences presented. I was happy to agree, take the antibiotic prescription, and go home.

Friday, the swelling had gotten worse, and the skin had gotten quite red over a larger area. I felt like I was wearing a too-tight turtleneck, even though I was in a t-shirt. By the middle of the evening, I got tired of waiting for the antibiotic to kick in, and of poking at the oddly soft spot in the center of the lumpy bit. After deciding that the soft spot just felt like skin stretched over some fluidy something, I did what any self-respecting lonely and bored bachelor would do. I performed a bit of Solo Home Surgery.

In this case, it was really just a matter of poking my skin with a sterilized pin, which immediately freed a gusher of white pus to flow. I had expected such a possibility, so I was prepared. What was surprising, however, was to look at the tissue after I pulled it away from my face. It held a small piece of metal, about 2 millimeters long, by about .5 mm wide, which I suspect is a fragment of a surgical staple, or some such.

My theory is that it had been captured, and perhaps encapsulated, in scar tissue for months, and had recently come into contact with lymph and happy elements necessary for bacterial-abscess-making, perhaps as a result of the physical therapy I've been doing to break up adhesions, and/or shifting and healing lymph passages.

Anyway, after about 36 hours of continued lymph fluid drainage, and more antibiotics, the redness is gone, the lumpy bit is gone, and I'm back to my "normal" swollen area below my jawbone. That "normal" swelling may even be slightly improved, it's hard to tell.

Weekend plans

2004-09-16T22:37:00.000-07:00

Tomorrow morning I'm getting on a plane to Oakland. Tomorrow afternoon and Monday I'll be working at the "home office" of my firm. I'll get to talk with the rest of my project team face to face! And meet the structural engineer! (He works for a firm with whom I worked in the bay area when we lived there... small world.) I think will be more productive and satisfying than communicating via email and phone calls.

On Saturday evening, I'll be one of the musicians for a 120th birthday dance. Two of our friends from the Bay Area dance community are turning 60, and they're throwing a big bash for themselves, with lots of English Country dancing. So I get to hang out and eat and dance and play music with lots of friends. The rest of the weekend, I'm going to be a social butterfly... if "butterfly" can be used to describe someone driving all over a large metropolitan area to see as many friends as possible in a weekend.

I wish Paul was going to be with me for the weekend, but he's going to be at home. He doesn't feel like dealing with traveling yet, with the feeding tube and all. AND, unfortunately particularly in its timing, it seems that he has developed some sort of infection under the incision along his jawline. He has some new and different swelling, which is red, warm and tender to the touch. He saw Carol (the nurse practicioner in Dr. Futran's office) at UWMC today; she said it looks/feels like an infection, and gave him some antibiotics. I'm not thrilled about leaving town with Paul sick in any way, but he's telling me that I should go. I'm going to be checking in on him regularly. If you find yourself with a little free time (and it's not an ungodly hour in Seattle), you might give him a call. I would certainly appreciate it.

Dear [your name here],

2004-09-12T11:12:00.000-07:00

Yesterday, my wonderful and very perceptive sister left this comment on Paul's post from September 7:

I've been noticing a pattern, and I'm wondering if it's frustrating for you. At various times throughout this ordeal, you've described the physical and emotional struggles you're facing, and it seems that few of us have responded (at least not publicly). And then you write a snippet of positive news (which is wonderful, and of course is what we all hope to hear), and you get encouragement and cheers. When you were first diagnosed, Kimberly wrote quite poignantly about how those of us on the periphery could lend our help. Now that you're in a different, but still very difficult phase, I'm wondering what we can do now to support the two of you. Any requests or instructions for your devoted fans?

Melanie is not the only one who has noticed this pattern, and "frustrated" only begins to describe my reaction to it. I recognize that it is easier to respond enthusiastically to good news, or to posts about aspects of our lives other than Paul's illness and struggles with recuperation. And don't get me wrong, we love getting comments about anything we write. However, it is when we write about our ongoing struggles that we most need to hear from you. When Paul writes something that is filled with pain and frustration, and even some despair, and there is no response, I feel sad, and hurt, and sometimes angry.

I imagine sometimes that you read this blog as if it were the "friends" section of your daily paper. Flip to the page, read today's news (perhaps laughing or crying or stopping to think), then go on to the next section. News flash: this is not reporting. These are our letters to you. I like to think that, if our posts from the six month anniversary of Paul's surgery had arrived in your email inbox, we would have gotten some response. In the post to which Melanie referred, I started by writing, "Stay in touch," and closed with, "We will let you know if you can 'do something' in particular to make our lives a little easier; in the meantime, 'standing there' with us will go a long way in helping us get through this." Those words are just as true now as they were seven months ago. Please comment, or write, or call. Let us know you're still here with us.

It's a beautiful Sunday in Seattle, and I have lots of things to do. I hope you're having a great weekend.

Love,
Kimberly

p.s. I received email recently from someone who worried that her words of support seemed cliched. I've been there, too; if that's where you are, I can only suggest that you just get over it. "I'm thinking about you" and "I'm sorry to hear that you're struggling" are perfectly good sentiments. Feel free to use them, or any of the other tried and true phrases.

Tailwind

2004-09-10T13:23:00.000-07:00

Yesterday I managed to eat with relative ease a 1/2 cup of very soupy rice, and later, a similar portion of delicious and thick split-pea soup Kimberly made for me. Food is good.

Paul Update

2004-09-07T19:10:00.000-07:00

So, by now you must be thinking, why, he's forgotten all about us. He goes and starts up a shiny new blog, and leaves us, his loyal readers at his original blog to drift, with only stories of jam and medical billing for comfort. How is Paul? What is happening? Enquiring minds, and all that.

Well, it is true that I've been spending a lot of time on my other blog, Ratiocination. The campaign and the political news have sucked me in. And, frankly, it's easier to wail about the broken state of our political system than to focus too hard or too long on how I'm doing.

I'd be more inclined to post here if I felt like I had news. How am I? Sadly, a lot like I've been for several weeks. I've been working really hard to take in nourishment by mouth every day, but it isn't like "eating". Rice really only works if the grains are really soft and moist, or if they are smooshed up into a sort of rice-paste or gruel. It's better than nothing, but it's not noticeably any better today than it was a couple of weeks ago.

We try different foods, different consistencies. Mostly they fail. With each failure, I am brought to the edge of tears. Sometimes beyond the edge. Potatoes, mashed, no. Potatoes, fried, cubed, no. Potatoes, fried, shredded, no. Eggs, scrambled, no. French Toast, no. Plain, well-buttered toast, no. Eggs, fried, just bits of the yellow. And so on. Cheerios, dry, a few at a time, are a reliable yes, if I don't go too fast. But they are too high in sodium for me to eat a lot of. Yesterday, I found I could manage old, stale dry-roasted unsalted peanuts that crunch into minute bits, though peanut dust gets into parts of my throat that make me cough. Lots of calories in peanuts, which is good right now.

This week, we'll be working on smoothies, oatmeal, and other gruels.

I'm desperate to get enough nourishment by mouth that I can get this damn tube out. With the extremely buttery rice, and Cheerios, I've been able to at least cut down on the number of calories I need down the tube each day. It's something, but not much.

In the last day or so, the variable lymph swelling around my jaw has shifted, somehow, so that it is in a new spot, more beneath my jaw. It's not better, but it makes my face look lopsided in a new way, and when it is at its most swollen, it pulls the skin in newly uncomfortable ways. Variety is the spice of life. Heh.

I go to physical therapy. I go to emotional therapy. I hook up my feeding apparatus, I pump food, I unhook my feeding apparatus. I clean same. Every few days, I get out a new set. Lather, rinse, repeat.

When I was on my cross-country bike tour, things changed when we got to Nebraska. The climate suddenly got drier, meaning that if we pulled off the paved road, just for a second, we picked up dozens of thorns, puncturing our tires. (We all had slow leaks in all of our spares by the time we left the state.) The terrain changed slightly, becoming a long series of slight, but draining hills, followed by descents too shallow to provide momentum up the next climb. The view didn't change. The people in the towns were unfriendly, and seldom spoke. It was hot, and the wind always blew from the wrong direction. Imagine a place that would make you glad to see the Rocky Mountains ahead of you when you are on a bicycle.

I'm in Nebraska again.

Kimberly just walked in with a trial smoothie. It tastes good. It's not thick enough to work easily, but I might be able to get some of it down, if I'm careful not to aspirate. The rest can just go into my feedbag. I'm going to go work on that now.

Yummy goodness in glass

2004-09-06T17:32:00.000-07:00

I've taken all of my preserves out of boxes, and put them on shelves in the cellar. Here's the documentary photo; click on it for a larger view. In reality, the basement room that I call the cellar is lit with one bare 75 watt bulb; the flash on the camera makes the whole scene appear much brighter than it is. However, the colors of the fruit really are that rich and beautiful. Looking at the display, I must admit that I'm proud of having developed some mastery of at least one of the traditional domestic arts.

Since the labels are not visible, I'll identify the subjects, from left to right:

Top shelf: brandied apricot preserves (2nd from left), and odds and ends of last year's peaches, pears, cherries, and blackberries.
Middle shelf: peach melba jam, applesauce, peach preserves w/ orange liqueur, cherries in almond syrup.
Bottom shelf: blueberry chutney (one jar has your name on it, Norman), brandied peach preserves, cherry chutney.

Oh, and the bottles that you see at the right edge of the photo are our small collection of ports and dessert wines... more fruit, sugar and alcohol, just in different proportions. Yum.

A is for applesauce - now with photo!

2004-09-04T22:45:00.000-07:00

When my parents, sister Melanie and nephews Max and Reed were in town in August, we went to South 47 Farm, a U-pick farm in the Sammamish Valley near Woodinville. Max was excited when he heard that we were going to a farm, and asked what sort of animals would be there. (He's a big fan of "Old MacDonald," so to his mind, "farm" means animals.) Melanie explained that this farm had plants, not animals, and that fruits and vegetables grew on the plants. I guess that she said something about the produce being "like we get at the grocery store," because by the time we went to the farm, Max was calling it the "grocery farm."

We piled into the rented minivan in Seattle, and headed across Lake Washington, and out to the farm. (During this drive, I sang the ZYX song many times, and Max regaled me with his newly minted Texas variation on the ABC song.) We arrived in Woodinville to discover that it was 10-15 degrees warmer there than in Seattle; in fact, it was hot, and very sunny. This was not going to be a long, leisurely U-pick experience.

We decided that we would pick some apples and blackberries; apples in particular seemed like a good choice for little boy hands. Mom stayed with Reed in the shade of the van while Max, Melanie, Dad and I picked apples. Williams Pride apples are fairly small, with a very deep, sometimes purplish, red skin. The trees in this orchard are young, and not yet very full, which made the dark red apples very easy to see and to pick. They weren't, however, within reach of 3-year-old hands, so Melanie held Max up to pick the fruit. Because Max thought this was so much fun, and Dad and I were picking as well, we picked almost 10 pounds of apples, not including the couple that we ate while picking.

After picking apples, Max was done. Plants - even those with "groceries" on them - don't hold a 3-year-old's attention for very long. Melanie and I made short work of filling a couple of baskets (and our mouths) with huge, juicy blackberries; thornless is definitely the way to go. And then we headed back to the cool of Seattle.
------------------------------------------------------------------------------------

Skip forward three weeks: there was time today for some more canning, and the apples from our U-pick adventure became applesauce.

Small apples take longer per pound to prepare than their larger siblings; I listened to the entire second hour of the new public radio show Weekend America while coring, peeling and chopping. Because I wanted the sauce to have some of the color of the apple skins, I simmered the skins in apple cider while I finished the chopping; this produced a lovely, cranberry-colored cider. Into the pot went the apples, the red cider (augmented with a little blackberry-infused cider I had on hand), and lemon juice. After the apples had cooked for half an hour, I added honey, cinnamon and nutmeg. Fifteen minutes on simmer and a tiny bit of sugar later, the applesauce was ready to go into jars, and into the water bath. I sat in my kitchen, canner boiling on the stove, listening to Garrison Keillor tell stories about the Minnesota State Fair on Prairie Home Companion. It felt a bit like a different time.

There are now five pints of pale pink applesauce on our kitchen counter. Tomorrow, they will go into the basement to join the other fruits of the summer. However, this October, when Paul and I go to Houston, one of those jars will be going to Max. He picked those apples. It's only fair that he get some of the fruits of his labor.

Update: Here are the jars of applesauce, nestled between two varieties of peach preserves on a shelf in the cellar. Isn't that color lovely?

Because I know you've been wondering

2004-09-02T22:35:00.000-07:00

Yes, it's time for more wonderful stories of medical billing. We had none of them in August, and I'm sure that you missed them just as much as I did. So, gather round, children...

You remember that little issue of the medical appointment at UWMC that got coded "in network" (where Paul hasn't hit the out-of-pocket limit) when it should've been "out of network," the one about which I spoke with Marcie at Group Health weeks ago? Marcie left a voice mail for me last week, saying that the appointment had been "authorized", by someone at Group Health I guess, and was therefore being considered in-network.

I called Marcie the next day, only to discover that she had gone on vacation for a week. So, I left her a message saying that: 1) Paul did not have any sort of authorized referral to UWMC from anyone at Group Health. 2) The bill from UWMC that was coded "in network" was the clinic portion of Paul's first appointment with Dr. Futran. However, the bill from UW Physicians for that same appointment with Dr. Futran was coded "out of network." All portions of the appointment should be one or the other. 3) Group Health had denied coverage of Paul's treatment at UWMC at "in network" rates because the care was available at Virginia Mason. We knew that going in, and made that choice. All billing from anyone related to UWMC should be out of network.

Today Marcie called me back. She told me that she had been notified that the appointment had been authorized, and should be in network. Furthermore, she had already filed the preliminary appeal, based on my phone message to her last week, and it had come back denied... even though she mentioned that the physician portion of the appointment had been coded out of network. Marcie agreed with me that this made no sense. However, she was calling to tell me, my only option at this point is to file a written appeal with Group Health, in which I should include all the back-up documentation, etc. etc. etc.

DAMN, but this is annoying! I could just let it be, and pay the $21.25, but there's that whole principle thing that I have trouble giving up on. I'll write the letter over the weekend; it will go out next week. Marcie says that I'll hear something from an appeals person within 10 days.

It's nice to know that I'll have something to write about in a couple of weeks.

Paul Goes to the Dentist

2004-09-01T17:01:00.000-07:00

My last dental appointment was just days before the surgery. On my way out, I made the next one for six months in the future, thinking, "What the heck, I may be dead then, and if I am, it won't be my problem." And then I promptly forgot all about it.

Which is how I ended up with an appointment this morning at the ungodly hour of 8 am. In my past life, that was a reasonable hour, but these days I'm not getting up so well, and making it to the office was a bit surreal. It didn't help that it was cold and rainy. We may get some echoes of Summer yet, but Fall has come to the City of Seattle.

As I made my way in, I realized I had no idea what lay in store. My mouth environment has been very strange. I haven't been eating, which was probably good for avoiding cavities. But my saliva production has been all over the map, between the effects of tube feeding, diuretics, swallowing difficulties and the same lack of eating. I've been brushing lately, but there was a while where my mouth was too sensitive and swollen. I finally decided we'd just see what we would see, and walked in.

The young hygenist listened sympathetically to my tale of woe, and took some digital x-rays. Apparently I have a few pins in my jaw I didn't know about. I really am Mr. Titanium these days. No major tooth flaws, though. Good news.

She then commenced to scrape off the tartar buildup. She progressed cheerfully along as I gripped the arms of the chair. (I'm not extraordinarily comfortable with people working on my teeth.) We discovered that rinsing was a problem, even with generous suction, as small amounts of water would sneak down toward my windpipe. We eventually found a technique of minimal rinsing, suction, and letting me sit up periodically that allowed us to complete the process without my drowning, or coughing in her face too often.

As she worked, it felt like there was a LOT of work being done. I closed my eyes. I tried not to let a tear leak out as I anticipated a gloomy report about the state of my teeth. Eventually, she said, "You're actually in really good shape, considering what you've been through." I was very happy, even with that "considering" clause. (Given that I can barely feel my lower right jaw, I'd had visions of all sorts of horror there.)

Polishing went remarkably easily. And then it was time to see Dr. Nguyen himself. He says I look great, and was very complementary about the work of the surgeons. He's seen other patients after squamous surgery, and "sometimes they don't look so good, all lumpy." (Despite his Vietnamese heritage, young Dr. Nguyen is as boisterously American as they come.) He was also happy to see me looking so healthy overall, and to hear that there had been no lymph node spread, so we were optimistic. He got a big wide smile on his face, which reminded me that, hey, that really is pretty great, isn't it?

So I got my trophy toothbrush and floss, and headed for home. On my way out, I made another appointment. It's for 8 am. What the heck, I can always change it later.

In which Kimberly attempts to lighten the mood around here by writing about obsession

2004-08-30T22:13:00.000-07:00

Over the weekend, I indulged in one of my favorite summer hobbies: making preserves. I call it a hobby; Paul has been heard to refer to it as my obsession. Occasionally, when I am filling the last few jars with jam at midnight, and contemplating the additional time required for their hot water processing, I consider that he might be right. I don't consider stopping.

This weekend, I made brandied peach preserves. The peaches came from Pence Orchards, a farm near Union Gap, WA that has been operated by the Pence family since the late 1800's. I buy Pence peaches because I want to support family farming, and because they are luscious. The process that I use for making preserves, garnered from Well Preserved, takes three days. It goes something like this:

Day 1: Peel and slice peaches. Do random quality control on peach slices. Yum. Layer peaches and sugar in pot. Place lid on pot; set aside until next day.

Day 2: Juice from peaches has dissolved most sugar. Boil peaches in resulting syrup for 15 minutes. Add lemon juice. Pour mixture into shallow pans to allow for "plumping" of peaches with sugar and evaporation of liquid. Place pans in cat-proof location - oven is good - overnight.

Day 3: Return peach mixture to pot. Bring to boil. Open kitchen window. Boil 15-20 minutes; syrup should now be thickened. Open back door; latch screen door so that cats do not escape. Continue boiling. Begin heating water in canner, and sterilize jars and caps. Why has it not thickened? Continue boiling. Decide syrup is thick enough. Remove preserves from heat. Add brandy. Watch brandy boil on top of no-longer-boiling preserves; think about relative boiling points of liquids. Ladle preserves into jars, screw on caps, process in boiling water for 10 minutes. Remove jars from canner; remove self and cold diet Coke from kitchen. Allow to cool.

After cooling, I labeled the jars, and stacked them into a case. And then, to Paul's delight, I carried that case - and the other three cases of preserves languishing on our kitchen counter from previous weekends - down to the basement... where they joined the case-and-a-half already on the shelves. Yes, as of yesterday, the count of jars filled with yummy goodness from this summer has reached 66.

Here's what I have so far:

I feel tremendously satisfied, seeing the jars stacked in their cases on the basement shelves. Only the caps and a small amount of the contents are visible, so I can't tell at a glance what is there. Sometime soon, I will remove the jars from their cases, aligning them in rows on the shelves, so that their colors - pale amber, deep blush, blue-black - are on display. As Paul rarely comes to this corner of the basement, the display is purely for my own pleasure.

And there is more preserving yet to do. I still have some William's Pride apples from South 47 Farm in cool storage. They're waiting to become applesauce or, if I'm really inspired, apple butter sometime later this week. I have more of the wonderful cherries from Alberg Farm in our freezer. I haven't decided yet what to do with them, but they're frozen, so they can wait. Sometime in September, the first pears will ripen, and I'll be making gingered pear preserves.

I have about 3 dozen empty jars still in the basement. It will take some work to fill them all, but I think I'm up to it.

Six months on the road

2004-08-27T15:46:00.000-07:00

Today is six months since my surgery, a fact I hadn't realized until Kimberly mentioned it earlier. In a way, I guess that's a sign that things are better, and that I'm not thinking about that day. Or maybe not.

Lately, I've been dealing with emotional aftershocks of that day, and it's been very disturbing. Some of the work we've been doing in physical therapy has stirred up emotions that are very powerful, and only now getting processed. In my two most recent sessions, we've gotten my body into a position which triggered a very vivid recollection of the surgery, if "recollection" is the right word for an experience you weren't conscious for. Both of these have got me wondering about the nature of anesthesia, and the drugs they give you to keep you from remembering the procedure. It seems clear that, while my mind has no memory of the events, my body sure does.

I guess that shouldn't be surprising. It was a grueling ordeal from a physical perspective. More than that, they CUT ME! A lot of the work I've been doing in rehab has been on the scar where the tracheotomy was. It healed a little funny, it pinches and is still a little irritated. The other day, I was overwhelmed by the feeling "OW-OW-OW-OW!", not now, but in a sense of memory. Did it hurt me when they slit my throat? I don't know; define "me". The part of "me" that is stringing these words together now had checked out. The part of "me" that does the breathing, and feels the weight of my butt against the seat, and everything else, was still, on some level, there and able to feel. And let me tell you, I have the impression we are pretty deeply wired to not have our throats slit, even if it were painless.

The optimist in me says that having all this quasi-memory, with its attendant emotions, coming up now is a good sign. It means that I'm healed enough, and strong enough, and not in survival-mode enough, for my internal psychological regulator to start letting it surface. But it sure isn't pleasant. It makes me tearful, and twitchy, and lots of other things you might expect from someone who's coping with pain, grief, anger, and assorted other emotions.

If you are wondering, yes, I have found a professional to help. She used to work with cancer patients at UW. We had our first meeting this week, which was mostly a data-dump. (Not that I can get through a data-dump on my medical history without breaking into tears a few times.) It's definitely time.

Meanwhile, what else can I say about the six month mark? It's a mixed bag. It could be worse, but I'm not where I wanted to be, nor where I thought I would be. I still have a pale white symbiotic worm poking out of my belly. I feed it regularly, and I seem to maintain weight. I'm very happy to be eating rice, but I'd been thinking of hamburgers by now. I'm thinking about a future, and my next career, but I'm dissolving into tears on a regular basis. The paramecium is beginning to look like my own skin now, but I still look puffy and lop-sided when I look in the mirror.

I haven't yet come to terms with the fact that I will never again be as I was before the surgery. And I haven't yet reached that place that could be labeled my "new normal." I'm a dislocated person. This body I'm in doesn't feel like the home I've known for 44 years. There's no going back, and the way forward is complicated and slow and not fully clear. Meanwhile, every minute just feels "wrong" on a subliminal, and often a conscious, level.

I have to stop writing now.

Six months out

2004-08-27T15:09:00.000-07:00

Paul's surgery was six months ago today. Some days, that day feels to me like not-quite-ancient history; other times it seems like it was yesterday. Paul has written today about where he is on this road. I, too, have a long way to go in recuperating from the trauma of this cancer.

I bear no physical scars from this experience. My body has not been cut, reconstructed, left aching or numb or discomfortingly unfamiliar. But cancer, and its treatment, do not wreak these changes only on bodies, but on psyches and on relationships.

I've spent the past six months doing my best to cope, and to help Paul recuperate. And, oh, the things I have learned, about this cancer, nursing, swallowing, medical billing. I have learned enough that, within the past few days, two trained medical professionals with whom I have spoken have assumed that I was one of them. (If I were, I'd be glad to have all this knowledge. As things stand, I hope that I never have need of it again.)

So here we are, six months out. We assume/hope/pray that the cancer is gone. For the most part, my work as patient advocate, nurse and billing specialist is done. And yet, there is still much that I need to do. It's time for a different sort of work.

My life is not as I knew it. Paul is changed. I am changed. Our marriage is changed. I do not know, cannot quite imagine, what our lives will be six months from now, or two years, or ten. And, as a former student of psychology, I recognize these signs: I feel exhausted; I cry frequently; I don't concentrate as easily as usual; I'm more irritable; I enjoy my favorite activites less. It's a classic pattern.

And I, like Paul, have found a professional to help me work through this. He calls my emotional state a "reactive depression." Another clinical term for this is an "adjustment disorder." Here's a definition:

An adjustment disorder occurs when a person develops affective (emotional) or behavioral symptoms in response to an identifiable stressor. Stressors can be natural disasters, events or crises, or interpersonal problems. The person displays either marked distress, or impairment in functioning (i.e. unable to work or study). Adjustment disorders, by definition, last less than 6 months (after the stressor or its consequences end). If the symptoms last more than 6 months, the person may have another disorder.

This sounds right to me. I can work with this. I'd just really like to know when that six-months-post-stressor-or-consequences clock will start.

Rice is Nice: Signs of Health

2004-08-25T14:21:00.000-07:00

Over the weekend, I was in the kitchen, looking at the big box of arborio rice my sister-in-law left us after her visit, and thinking, I wonder if I could eat any of that? I'd tried a little of the risotto she'd made, sitting with the family one night while they were here, and it hadn't gone too badly. So I cooked up a small pot, with some of my home-made chicken broth from the freezer, and some butter and garlic, and had at it. Yum.

The good news is that every day since, I've tried to eat a little more rice. Yesterday, over the course of the day, I got in about 3/4 cup. It doesn't go down particularly easily, but it goes down, and not into my lungs. There is considerable hacking and throat-clearing involved, but very little coughing, since I seem able to avoid aspiration. It seems like the big problem at the moment is getting solid stuff beyond a miniscule size past a certain point in my throat. The muscles involved in pushing it down don't seem to want to play, or something.

It seems simultaneously wonderful and pitiful. I'm really enjoying actually eating something tasty and healthy, but considering how much work goes into each small bite, it's, well, a long way from where I want to be. I keep telling myself, one step, or crank of the pedals, at a time.

As for other steps, several people have commented to me that the increased energy in my political rants is an indicator of returning health, and a positive sign. They, and other readers, will probably be pleased to hear that I've actually gotten up the energy to start a brand new blog, just for my political ranting, to spare Bush supporters and others who just want news about my health and how our family is doing.

Before you all go rushing off to look, be warned. There isn't much there, and the metaphorical sawdust is still in the air. However, if you want to be among the first to bookmark it, (or add it to your Favorites, or whatever IE users do ;-) ) I'm calling it Ratiocination. I'll be fixing the place up over the next few days with the aid of my top-flight template designer. If my megalomaniacal visions come to pass, it'll serve as home base for my future career as a political columnist.

The casual viewer may miss the ways in which it is even more a sign of returning health. For one thing, it's hosted at nosmallplans.com, not blogspot. When I was still reeling from my squamous diagnosis, and wanting to get a blog started as rapidly as possible, I chose blogspot for simplicity's sake. Now I have the time and energy to set one up as part of the domain I'd created as part of my coaching business. That I have the ability to focus on the many niggling details of ftp addresses, file permissions, and managing remote Unix directories on a contracted server in Quebec, is a real sign for me that I'm getting better. (Lest anyone read signs of increasing paranoia in me basing my political blog on a server in another country, it's just a co-incidence. Really. No, really.)

Speaking of future careers, and my coaching business, it's been on my mind lately that I'm getting enough energy to start thinking about some kind of work. As we move into the Fall, I'll be working on getting back into coaching. I'll be starting in a limited way, at first, to see how I do with it, and to finish up my credentials. Stay tuned for further developments.

Time to go warm up a little bowl of rice!

Update (7:45 PM): OK, it was too good an opportunity to pass up. Ratiocination is hopping! Go there!

We interrupt this rant...

2004-08-25T13:35:00.000-07:00

... for a little nonpolitical nonsense.

It is raining in Seattle. In August. While we understand that those of you who live elsewhere believe that it rains all the time here, those of us who live here know that August is the month in which we are most likely to have no rain at all.

Some years, August is all the summer we get. (Just ask my mother, who, arriving here in July of 1999 with only short sleeves and Houston-weight linen in her suitcase, borrowed sweaters and jackets from me every day of the trip.) But this year, a year in which summer came early and brought more sun and heat than usual, it seems to be leaving early as well.

Have we run out of degree days (or some equivalent measure of sun and/or heat) for the year? I've been worried this might happen. I said to Paul earlier this summer that, the way this year was throwing the warmth around, I was afraid it would run out early, and then we'd be left with a miserably cold and rainy fall.

Or maybe, sometime during the complete craziness of the early part of this year, we just missed a month altogether, and it's really September. This weather feels like September, and that would explain the whole "early summer" thing. And, frankly, I wouldn't mind being one month closer to the end of this bloody year.

But if it's September, then today's my birthday. Where are the presents and flowers? Why hasn't anyone called?

OK... we're going to leave the odd meanderings of my mind at lunchtime. I now return you to Politics with Paul. Aren't you glad?

Why (whack) won't (whack) this horse (whack) die? (whack)

2004-08-23T14:36:00.000-07:00

[Yes, I am getting tired of this. I'll be done with it soon. I hope.]

Now I'm starting to see headlines like "Bush Says Ad Against Kerry Should Stop." You might think that the President has finally come out and done what John McCain, John Warner and others have been calling on him to do for some days now, specifically denouncing the ads against Kerry. Surprise!

What he HAS done is to denounce all ads from "527" groups, the supposedly independent advocacy groups of which the Swifties are one. That's a little like saying, to borrow a metaphor from politico-blogger Josh Marshall, that if I say I'm opposed to politicians who support the death penalty, that I've denounced Josef Stalin.

Let's look at that pesky old transcript:

QUESTION: But why won't you denounce the charges that your supporters are making against Kerry?

BUSH: I'm denouncing all the stuff being on TV, all the 527s. That's what I've said.

I said this kind of unregulated soft money is wrong for the process. And I asked Senator Kerry to join me in getting rid of all that kind of soft money, not only on TV, but to use for other purposes as well.

I, frankly, thought we'd gotten rid of that when I signed the McCain-Feingold bill. I thought we were going to once and for all get rid of a system where people could just pour tons of money in and not be held to account for the advertising.

This might seem surprising to those who've looked at his comments when he signed the bill, when he seemed to be very concerned that advertising would be restricted:

I also have reservations about the constitutionality of the broad ban on issue advertising, which restrains the speech of a wide variety of groups on issues of public import in the months closest to an election. I expect that the courts will resolve these legitimate legal questions as appropriate under the law.

OK, so, not only has he NOT specifically denounced the allegations against Kerry, instead issuing a statement about the "process", against "527" group advertising of all kinds, but in the process, he's misleading about what his original position on advertising in McCain-Feingold was. Nice. And somehow this gets reported as though he's done the honorable thing, and come out against the anti-Kerry allegations.

(And, just in case you didn't already know, John Kerry has specifically denounced the ad from MoveOn PAC, attacking Bush's National Guard record, which was released AFTER the first SwiftVets ad. Kerry's actual, specific denunciation was Aug 17.)

On Rhetoric

2004-08-22T15:21:00.000-07:00

The point of my last post, beside my amusement at the image of W. with man-eating aliens, was to illustrate something about the nature of rhetoric in the current political debate. Behind this whole flap lies a meta-story, about what counts as "truth", the difference between reporting, analysis and journalism, and, I think, a deeper philosophical issue between "revealed truth", apprehended through non-rational, emotional perception, and "Cartesian reality", apprehended through logic and the use of external evidence.

I've been seeing a lot of coverage in which dutiful journalism school graduates are working hard to be "objective" about the whole Swift Boat Vets allegation issue. Sadly, their interpretation of "objective" is to present both sides of the controversy as if they had equal weight. There are important cases where good reporting doesn't just mean reporting "he said" and then "the other guy said". Imagine if news reports merely took my last posting and reported it with the headline "Guard Vet Casts Doubt on Bush's Alabama record." Somewhere in the fourth or fifth paragraph, after reporting that I said Bush had ties to evil aliens and wanted to eat babies, there may be a mention that not only does the Bush administration deny the allegation, but many other people think I made it all up. Is it good reporting to make the story into a "he says one thing, the administration says another" situation? At some point, good journalism requires judgments to be made about what gets reported. Otherwise, any loony allegation becomes legitimized.

In the Swift Boat situation, the Navy records all support Kerry's version. Sure, maybe such things aren't always precise, given fog-of-war and fog-of-bureaucracy, but aren't they at least presumptively the truth? Doesn't anyone contradicting that historical record have a burden of proof, beyond mere allegation? Have the SwiftVets presented any actual evidence that proves those Naval records are in error? Alternately, is there evidence from other sources that Naval commendations are generally given out under false pretenses, which might then lessen the burden of proof in this specific case? No.

All the people who were closest to the action in question also support the Navy's official (and Kerry's) version of events. Interesting. Those who are accusing him either weren't present, or were tens to hundreds of yards away. And, some of those who shared those distant vantage points ALSO support the official version. Doesn't this give us basis to make some judgments about the evidentiary value of their stories?

Next, in evaluating an allegation, especially one that flies in the face of established historical record, doesn't it make sense to evaluate the people making the claims, based on their previous reliability, and possible motives for either telling the truth or, perhaps, fabricating? The current set of "revisionists" are a motley group. Some are on record as actively supporting Kerry in his past campaigns, as reported in the New York Times. Are they lying now, or were they lying then? Others will tell you straight out about how angry they are about comments Kerry made after he returned home from Viet Nam, comments they often misquote or misconstrue. One of the people appearing in the ad actually worked in a minor position for the Bush campaign. Does this give us any hints about whether they have a bias?

Finally, before judging the credibility of these allegations, which a) contradict the record, b) contradict the stories of those closest to the action, c) contradict the recorded previous statements of some of those making the allegations now, and d) seem to potentially be biased by resentments over other issues, like Kerry's anti-war activism, there is another step. Have we seen anything like this before? What does our previous experience tell us about situations like this?

As it turns out, we HAVE seen similar attacks on two decorated veterans recently, John McCain and Max Cleland. John McCain was running directly against George Bush. Max Cleland was running against a Republican candidate. Hmm. Some of the same people working on the Swift Boat Veterans ads also worked on these previous attacks. Could these Swift Boat Vets be a front for a group of Republicans attempting to smear John Kerry, rather than a legitimate group of old soldiers with an honest desire to correct the historical record? Maybe we should take a look at their funding sources before we repeat their allegations?

Sadly, there are people like Lee Atwater and now Karl Rove, who, in their commitment to winning and to power, figured out that objective truth doesn't matter, and that the place to attack your opponent is on their strength, not their weakness. If you throw bullshit onto anyone, even if it all slides off, they still end up stinking. And in the meantime, everyone is looking at them with crap all over them, and no one is looking at you and your defects. It works especially well in a culture that has been conditioned by absurd TV advertising and sound-bite journalism to stop thinking for themselves, and not to spend much time questioning things that don't seem to make sense. It's abetted by a news media that ranges from drum-banging ideological supporters, to well-meaning, but unsophisticated, "objective" reporters.

To borrow a phrase, "America can do better."
---

For the pithiest comment about the whole Swift Boat Vets flap, I recommend a Mike Lukovich cartoon that was reprinted in the Sunday New York Times print edition. I'd link to it, but the Atlanta Journal-Constitution wants to know way too much stuff about me before it lets me see the page I want, so I can't. For those less obsessed about sharing demographic info on the Net, go look somewhere around http://www.ajc.com/opinion/content/opinion/luckovich/ for the Michael Phelps cartoon.

Also interesting, especially given Bob Dole's comments this morning, is a Boston Globe editorial Sunday, imagining what would have happened if supporters of Bill Clinton had impugned Bob Dole's war record in 1996. Speaking of Dole's comments this morning, it might be worthwhile to remember Dole's own 1988 description of one of his own wounds from WWII, caused by a grenade he admits he threw, badly, himself: it was "the sort of injury the Army patched up with Mercurochrome and a Purple Heart." What? No time spent in the hospital, Bob? And "self-inflicted" to boot. Shame on you.

PS. For those who don't think the Bush campaign has anything to do with this, here's their official commentary on Kerry's reaction to being called a liar, a fraud, and a coward.

"Bush's campaign chairman, Marc Racicot, went on CNN and said the Kerry campaign has come 'unhinged,' and that Kerry himself 'looks wild-eyed.' Earlier yesterday, White House spokesman Scott McClellan said Kerry is 'losing his cool.' In 2000, the Bush campaign used similar language to portray rival Sen. John McCain (R-Ariz.) as potentially too unstable to run the country." (Washington Post)

Guard Veterans for Truth

2004-08-22T14:11:00.000-07:00

I know that it's actually President Bush who is lying about his record from the Viet Nam war era. I served in the Guard with him, and I know that what he says is untrue. He is a lying coward and a pants-wetter, and I know because I had to do his laundry. Not only that, he wears frilly pink underpants. He suggests that he left his station in Texas to go to Alabama to work for a Congressional campaign. That is a cowardly fraud. I know that he went to Alabama to join forces with evil, man-eating alien monsters, hell-bent on destroying our country. That day he did not appear for his physical, which caused his pilot's license to lapse, even though he was on active duty in the Air National Guard? He was on board the alien mothership, receiving orders downloaded into his brain. He avoided the physical so that their tentacle marks would not be discovered. No one can remember serving with him because they have all had their minds wiped as part of evil-alien mind-control experiments. That and the fact that his roommate on base was Ultrag, one of the evil aliens. Ultrag would confirm all this, but he's dead now. He ate too many of the men in the unit all at once, mostly the ones that Lt. Bush didn't like. The fact that none of the available documentation from his unit commanders says anything about men being eaten is just because they were based on Lt. Bush's own reports. One of them even has the intials "BS" on it. No, I don't know why it's an "S" since Bush's first name starts with a G.

Of course you're wondering why I haven't come forward about all this before. Well, I just think the President's recent posturing as someone so obviously NOT under mind-control are insulting to all us Guard veterans...what? Well, yes I am. I was a Crossing Guard at my elementary school at the time. And besides, I didn't actually remember any of this, no doubt due to alien mind-wipe at the hands of Lt. Bush himself, until just this year, which is why I'm on record in the past as denying the entire existence of evil man-eating aliens. It was only after special "presidential portrait" regression therapy, in Boston, with a doctor who just happens to be the widower of John Kerry's nanny , that I started to remember. Why yes, that therapy does involve waving many small pieces of green paper featuring the pictures of dead presidents and ever-increasing numbers...I guess you've heard of it? Oh, and I hadn't previously had a chance, at any time in the last 30 years, to get together with my other Guard vets to compare stories, until the Cabots and Lodges flew us all to Boston and had us over to their house that weekend, and I heard from the other guys all the horrible things Bush did. I wasn't there to see it, but I heard from this guy I trust (because I served with him, y'know?) and he says he saw Bush in a meeting with Adolf Hitler and Genghis Khan, who are both still alive on board the alien ship, where they discussed eating babies. Plus there was that Satanic ritual. And there's another guy who told me that the President keeps talking to him through the fillings in his teeth, and that just shows how the President cares nothing about invading someone's privacy for his own political gain. So after I heard all that, I had to speak up. Right? Of course I did.

I'm waiting for calls to schedule my appearence on all the TV news shows. I'm looking forward to meeting that nice Mr. Lehrer on PBS. Meanwhile, does anyone know where I can get a good price on aluminum foil? I need to make some hats for us and the cats.

Excellence in sport

2004-08-19T22:27:00.000-07:00

Since joining our family (and probably before), Sergei has been an athletic boy. As a kitten, he amazed us with acrobatics in pursuit of his favorite toy, a cluster of feathers on a string. Backflips, vaults over furniture; they were beautiful, elegant... and talk about sticking the dismount. Sergei landed on his feet every time. He had the makings of a fine gymnast, I thought.

Little did we know that Sergei's true calling was track and field, particularly the high jump. Sergei did not readily share this new interest with us; we had to discover it for ourselves. While sitting at my computer one evening, I heard a plaintive meow, followed by a scratching sound, then a thump. Roowwwwrrr... scrabble, scrabble... thump. I was puzzled. Roowwwwrrrrrr... scrabble, scrabble... THUMP. And curious. Walking into the hall, I spotted Sergei crouched by our bedroom door. He stretched nonchalantly, and strolled over to be scratched. Paul allowed as how he had heard the sounds, but did not know what Sergei was doing.

Some days later, again at my computer, I looked up to see Sergei crouched in the doorway to my office. Facing the door jamb, perhaps an inch away from it, he was looking toward the ceiling, making the same strange throaty meow as before. When he noticed me watching, he quieted and sat up. I turned back to the computer; he crouched again. In my peripheral vision, I watched him; muscles tense, almost vibrating, emitting that same strange meow (rrooowwwwwrrrr). Suddenly, he launched himself straight up into the air. His paws scrambled against the door jamb (scrabble, scrabble), adding a little height to his leap. Then he dropped to the floor (thump). And caught me watching him, looked startled, and ran away.

The first jump of Sergei's that I saw, he got about three feet off the floor. Now, fully grown, well muscled, and with finely developed technique, he can jump nearly five feet. He has lost some of his diffidence, and is more comfortable with being watched while he jumps. However, he's not one who performs for the roar of the crowd. Sergei jumps just for love of the sport.

And, sometimes, to catch a moth.

Backwards Aunt Kimberly

2004-08-17T22:53:00.000-07:00

Before I go any further, I want to let you know that "aunt," when used to refer to me, is pronounced "ant," or perhaps even "a-yunt." My people are from Texas. We don't say "ahnt."

Shortly before my family came to visit last week, Melanie wrote about asking Max to spell his name.

With a straight face, he responded, "M.A.W." I laughed and said, "Max, that's silly. How do you spell your name?" He replied, "M.A.X.Y.Z." And then he burst into song: "Now I know my ABC's. Next time won't you sing with me!"

Reading this, I laughed, too. Then I started to think about ways I might amuse Max and encourage that quirky sense of humor he's developing. After all, I am the aunt who, over Christmas, taught Max that it's funny to turn a common children's rhyming-game-with-toes on its, um, ear. The first time that I suggested that a piggie might be going somewhere other than to market, Max responded, "Noooooooo," in such a way as to suggest that I had gone all the way 'round the bend. However, he found this craziness funny, and within a couple of days was happily participating in a revisionist history of piggiedom:

This little piggie went to the grocery store.
This little piggie stayed in the car.
This little piggie ate french fries.
This little piggie had some, too.
And this little piggie cried boogaduh-boogaduh-BOOGADUH
all the way home.

For some reason, when Melanie mentioned Max's playing around with the spelling of his name, I thought about spelling it backwards. What would he think if I told him I spelled his name X.A.M.? This led me to consider turning the ABC song backwards, with a special made-for-Max twist at the end:

Z. Y. X. W. V. U. T.
S. R. Q. P. O-N-M-L-K.
J. I. H., G. F. E., D and C, B and A
Now I know my Z-Y-X's. Isn't that how you sing it in Texas?

I practiced it a couple of times - one certainly doesn't want to blow it in front of a 3-year-old - and had it ready to sing for Max.

The song was a hit. I was made to sing it multiple times each of several days, particularly when we were in the rented minivan, and Max was a booster-seat-captive audience. After getting a bit bored with just the ZYX song, I would sometimes sing the straight ABC song, but change the last line from "Next time won't you sing with me" to "Sing it backwards, if you please," and then launch into Z.Y.X.etc.

It is, perhaps, not surprising that my song had an effect on Max's version of the alphabet song. He was particularly taken with the reference to Texas, and modified the ABC song he already knew:

A. B. C. D. E. F. Texas.
H. I. J. K. L-M-N-O-Texas.
Q. R. S., T. U. Texas, W. X. Y. and Texas.
Now I know my Texas song. Next time won't you sing it in Texas.

(Won't his new nursery school teacher be surprised...)

The day before my family left to go home, Max and my mother were looking at a plant. He told her that the leaves were yellow, and the flowers green.

"Max," she asked, "are you being backwards?"

He replied, "Yes. Backwards like Aunt Kimberly."

At least he didn't mean what most Texans do when they refer to someone as backwards.

All Over the Place (media rant)

2004-08-16T12:27:00.000-07:00

There's one particular bit of political rhetoric that has been repeated so often that it's becoming a "fact", and I'm tired of it. This morning I had to hear Cokie Roberts repeating it on NPR, just as matter-of-factly as if she were talking about gravity, or breathing air. It is that John Kerry "can't give a straight answer" to the question of the war in Iraq, that he's "tried to make a virtue out fact that he's nuanced, but on this case he seems to be all over the place" on his position. The Bush campaign has been working hard to reinforce this idea, having already implanted it in the first place several months ago. I'm just so tired of hearing it.

Here's what a politico-blogger, Bob Somersby, wrote, as I might have liked to:

What is Kerry's stand on Iraq? Readers, get ready for some real brain-work! Here goes: Kerry says Bush should have had the authority to go to war, but then went to war prematurely. Wow! Have you finished scratching your heads about all the nuance involved in that statement?

Remember way back when, when the President was still pretending he hadn't already decided to attack, when we, along with the UN, were supposedly trying to get more weapons inspections in Iraq? (Remember back when we believed in "evidence" and "proof", not just assertion, suspicions and estimates?) Remember the Bush Administration arguing that they needed the support of the Congress to pressure Iraq for more inspections, and to get UN support?

Imagine a world where, using the weight of such a resolution, a President worked to get actual inspectors on the ground to prove, or disprove, suspicions about WMDs, BEFORE we started shipping troops. IAEA inspections had already managed to give us a good picture of the state of Iraqi nuclear weaponry. Golly, if Mr. Bush had actually used the resolution Kerry voted for in the way the administration claimed he would, we might have saved billions of dollars, and nearly a thousand soldiers' lives, by discovering there were NO WMDs in advance! Or, actually discovered weapons, if they existed, which would have meant the whole world, even the French, would have piled on, and we might have been able to "split the check". (Would that have been being too "sensitive?")

Kerry has been making this argument, clumsily, for months, as you can see if you go back over his statements. This whole "he's all over the map" and "can't give a straight answer" riff is fiction. And I'm really, really tired of hearing it from people who ought to know better, and could, if they bothered to pay attention. It's just not that hard to get. I just wish that Kerry spoke as plainly as Bob Somersby writes. It would help in the battle-of-the-sound-bite-stars that seems to pass for news these days. (Though even Kerry's actual statements are not all that hard to understand, if you actually look at what was said, not what someone said he said. And I'm a little bit bewildered by the suggestion that grammatical sentences, even long ones, are harder to understand than Bushisms, or rants about some negotiating with Al Qaeda.)

Now, my personal opinion is that it was clear at the time that Bush was insincere in asking for a Congressional vote. I thought it was obvious that he would go ahead and use any such vote to go straight to war, not passing GO (or the UN), and not collecting $200 billion in world support. I fault Kerry for going along with the crowd, and giving him the ability to do so.

But the story has been straight on this for some time. I just wish the press would start reporting it and stop doing the Bush campaign's work for it.

My sister's boys

2004-08-15T14:45:00.000-07:00

I haven't written much of anything this week. It's not that I haven't wanted to write, but at the end of the day, when I usually write, I have been just too tired to focus on it. Why I am so tired? Here are the reasons:

Reason #1: Max, 2 years, 11 months. AKA Mr. Max, or the Little Dictator.

A smart, funny, perpetual-motion machine. Likes dinosaurs, making up unique versions of songs, ice cream, the zoo, testing limits, splashing around in the pool.

Who knew that one small boy could wrap my mother so tightly around his little finger?

Reason #2: Reed, 10 months. AKA Boo.

A quiet, observant, easygoing baby. Likes raspberries (eating and blowing), tupperware containers, drooling, being bounced up and down (especially if accompanied by funny sounds).

Who knew that a baby could do the breaststroke on the floor... and move so quickly while flat on his belly?

My parents, my sister Melanie, and her boys arrived in Seattle on Tuesday. They left today. After some rest, housecleaning and laundry, I'll write some more. I do have lots of material.

Isn't he cute?

2004-08-13T23:49:00.000-07:00

Well, isn't he? I readily admit that I'm biased, but really, how could you not love that face? Especially when he smiles at you like that...

(I hope he's not embarassed by this sappy display of affection. Anyone who knows us, or has been reading here for a while, already knows that I love him.)

Olympics Olympics Olympics

2004-08-13T19:23:00.000-07:00

Editors note: Today, in honor of the opening of the 2004 Olympics in Athens, we have a guest post from the friend of ours most qualified to speak to all things sporting.

To say that Mason is a sports fan is something like saying that Lance Armstrong knows how to ride a bicycle. Mason is a fan with a capital F, A and N. The common wisdom among our friends is this: if you can score it, Mason will watch it.

Those who know the extent of Paul's and my interest in sports will understand that Mason's love of sports is not why we are friends. (It is, however, great to have a friend whom one can ask about the finer points of curling... if ever one wants to know.) Mason and Paul met on the day that they both arrived at Brown; I met them both a few weeks later. He has been a friend to each of us, when we were together, apart, and together again. Mason was Paul's best man at our wedding... and one of a couple of friends whom we saw on our honeymoon in England.

Mason has spent the last couple of years in England, doing graduate work at the London School of Economics. This means, of course, that he has also been studying British sports. His is a different view of the Olympics than most of us in the States will see in our "all USA, all the time" coverage of the Games (unless, like Paul and me, you live near enough to Canada to get CBC on your cable).

I've written enough. Here's Mason.

In 1993, on the eve of the selection of the city for the 2000 Summer Olympics, Chris Golde and I were wondering through San Francisco's Chinatown. We encountered an older Chinese man (I would guess in his 50s) who was covered in Chinese flags and signs that read "Beijing 2000" or had the Olympic rings logo. In a stereotypical Chinese accent, he kept rhythmically chanting a triplet: "Olympics, Olympics, Olympics." To this day, Chris and I can never say the word Olympics just once or twice--only three times will do.

Chris and I wound up attending two Olympics (Olympics, Olympics) together: Atlanta in 1996 and Salt Lake City in 2002. As a sports nut, I see the Olympics as something special. In fact, I firmly believe they should get rid of most of the “popular” sports (soccer, baseball, tennis, etc.) and make the whole thing a mélange of minor, wacky sports.

Trivia question: Is three-handed Yngling: a) a mutant Panda, b) what has replaced two-handed blingbling, c) an Olympic event?

The more "athlons" the better: heptathlon, decathlon, triathlon, and modern pentathlon--my favorite because it combines horseback riding, fencing, shooting, running and swimming. Modern pentathlon is supposed to combine five military disciplines, but swimming? Why not something like taekwondo or archery? Having lived in England for the last two years, I also envision a Pub Triathlon: darts, foosball, and snooker.

Oddly, the only thing I've experienced that resembled the Olympics is SIGGRAPH, a trade show for computer graphics. The Olympics resembles a trade show for athletics and athletes. One feels such a buzz and intense appreciation for competition when walking around an Olympic city. You also feel that you are experiencing the very pinnacle of something.

In Salt Lake City, Chris and I attended the front half of Nordic Combined, a combination of ski jumping and cross country skiing. The Nordic Combined is not biathlon, which is shooting and cross country skiing. (Why not a Winter Triathlon with luge, speed skating, and curling? Makes just as much sense to me.) To see ski jumping live really gives one a sense of the incredible distance these jumpers cover. On TV, the zoom lens make the jumper look large and diminishes the distance. In person, they look really small against a huge hill, which is the length of a football field at an enormous angle. I suddenly found myself with great respect for Eddie "the Eagle" Edwards, the British ski jumper who was viewed as a good-hearted joke when he competed, because he always came in dead last. I looked up and thought I would never go down that hill in a thousand years. If I did, the odds are poor that the skis would touch the ground before the rest of me. Edwards was willing to give it a try, and he did manage to land on his feet. Good on him.

In Athens, the UK's hopes are looking somewhat bleak. There's only one wrestler, and he's actually American. There's one weightlifter. The only British decathlete has been so badly injured that he's entered only one competition in the last three years. The UK is hoping to pick up a couple of medals in swimming and is pretty solid in sailing and rowing.

The Brit who is most likely to emerge an Olympic hero is long-distance runner Paula Radcliffe. She's already a household name here, and she is going to be a huge story. At the 2003 London Marathon, she broke the world record by three minutes. She wears these taupe knee socks and is a running bobblehead doll, whose style has been described as "nodding dog in agony." The big question is whether she can manage the heat and humidity of Athens. Millions here will watch on the middle Sunday of the Olympics to see if Paula can do it. If she wins, she’s Dame Paula before her plane finishes taxiing down the runway at Heathrow.

If Paula should lose, the UK may fall into a deep depression, depending on how badly she fails. If she gets a medal, people will get over it pretty quickly. If she wilts in the heat and fails to finish, there will be a collective “why do we always suck?”, a sentiment which is especially pronounced here after major men’s world and European football tournaments, as well as every Wimbledon.

As an added bonus, 36-year old optician Tracey Morris also qualified for the Olympic Marathon by being the fastest British woman in the 2004 London Marathon. Amazingly, the Olympics will be only her THIRD marathon. (Radcliffe skipped the 2004 London Marathon to focus on the Olympic Marathon.) When I first heard a 36-year old optician had run the London Marathon in 2 hours 35 minutes, I was quite suspicious that she had taken the Jubilee Tube line for a good portion of it.

So, get ready for what one British newspaper writer called "two weeks of watching non-menstruating teenagers in tears." To which I add, two weeks of figuring out why a floor exercise has a dismount and what happens when people on a trampoline fail to stick the landing (answer: Greece’s Funniest Home Videos). Two weeks to see if the South Koreans are still in a hissy fit over short-track speed skating (answer: yes).

Olympics, Olympics, Olympics.

It's a rough life...

2004-08-11T14:48:00.000-07:00

Just in case you folks thought all I do is lie around with a cat in my lap, you should know you are sadly mistaken. Ever since last weekend, when we set up a present that Kimberly got for me, I have also been making time for lying around in my new hammock on the front porch.

It's pretty awful. The weather has been in the high 70s and low 80s, with a nice breeze most days, and the sky is blue, and there are lots of songbirds in the trees nearby. I've even figured out a way to string my feedbag on the back of a rocking chair nearby, and set the pump on a crate we use for a table out there. So I don't have to miss valuable calories.

I was thinking this morning that being in the hammock was a little like being out in my kayak, without the work. I get to gently rock, and feel the breeze, and relax. I believe it may have something to do with the improvement I've noticed lately in my under-chin swelling, and swallowing. Who knows?

Later I'll see if I can get Kimberly to take a picture, and show me how to link it here. In the meantime, if you want to see what my hammock looks like on someone else's porch with some lame models posing in it, you can look here.

A cat and his boy

2004-08-07T15:32:00.000-07:00

For the visually inclined, I offer this photo as a "show" to go along with Paul's "tell" from yesterday afternoon.

As I have noted before, Paul and Sergei have a special bond. And, as you can see in this photo, there are some striking similarities. Note angle of head and paw, goatee, sprawled relaxation.

What may not be visible, but is clear to those who know and love them both, is that they are affectionate, curious and clever. And they both love a good nap.