We’re having a party!

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

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’¬ís 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

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

Modern Tranquilizers

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Good Day Sunshine

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


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 8.5×11 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 11×17 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

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!