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.