Tuesday, February 28, 2006
Two Years
(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.
Saturday, November 05, 2005
A New Chapter
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.
Wednesday, October 12, 2005
Arrgh. Pledge Drives!
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.
Wednesday, October 05, 2005
Another Time Around
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.
Monday, September 26, 2005
Starting the Kick
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.)
