Make it stop

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!

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

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

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

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

1. I’ve survived cancer – twice.

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

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

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

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

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

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

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

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

10. I’ve been stung by a scorpion.

11. I’ve eaten rattlesnake.

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

13. I’ve been in 48 of 50 states.

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

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

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

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

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

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

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

The Party

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

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

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

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

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

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

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

A cookie while you wait?

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!

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.