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Archive for April, 2009

lost in a moment

The brilliance of art is that artists take one thing and make it something else altogether. They see possibilities where most of us see ordinary things.

sushi bar

Take five minutes and watch this video. It will take you somewhere else, somewhere beyond the obvious. Make sure you have the sound turned on, quietly.

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in a fog

(borrowed from Flickr)

This month, I got off to a good blogging start. But in the last couple of weeks I’ve gradually lost interest. Just haven’t had anything to say. It looks like the fog is settling in.

The standard accepted treatment for metastatic prostate cancer—the kind you can’t remove with surgery or nuke with radiation—is androgen deprivation therapy. There are a few drugs available that shut down your pituitary gland’s signals to the rest of the body to produce testosterone. When they kick in, after about two weeks, you lose most of the male hormones (androgens) in your body. That slows the cancer cells from growing, since they are largely dependent on androgens for growth.

So we all like to joke about the hot flashes and mood swings, since this treatment puts the body in a state similar to what women go through in menopause. But the thing you don’t hear about is that taking away testosterone changes your mental and emotional state, and not just in the obvious ways. Men react differently to this change, and for me, the most disturbing thing is that I get (first) apathetic and tired, mentally tired; then (by the second month) my thinking goes foggy. I find it difficult to read a chapter in a book and retain much of it, or even remember by the end of the chapter what the first part was about. If I don’t stay on top of this whole experience, I end up in a dark depressed state, not really caring about much of anything.

It looks like the fog is coming. I’m just not going to be as clever and quick-witted as I always thought I was.

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when pain takes over

munch-melancholyThe last couple of years have, not surprisingly, introduced me to experiences that I’d never imagined would be part of my life. Some of these are things I have simply not paid attention to, even when I’ve tried to be sympathetic about them with people I’m close to. I suppose we all need to forgive each other for just not paying attention when something doesn’t hit close to home.

Last week I had an experience with pain that has me thinking seriously about what the future may hold. For two years I’ve been asked by medical staff “Are you feeling any pain?” and it’s always been a question I’ve brushed off. No pain, I’ve felt healthy and happy—if you don’t count the obvious post-surgical pain from being cut open and having my plumbing rearranged. And for that I had a nice supply of Lortab.

Last week, I had my first infusion of a bone-strengthening drug called Zometa. This became my introduction to the chemo clinic: although Zometa is not a chemo drug, it has to be administered on a slow drip. They gave me a recliner in between some of the regular chemo customers, and it took a little less than an hour. I walked out thinking, OK, I can do this.

Not exactly. Over the next six hours I had increasing discomfort in just about every muscle in my body, and by the evening I was experiencing pain, complete and overwhelming pain. I spent most of the evening curled up by the fireplace, waiting for the ibuprofen to kick in. (It never did, completely.) And the next day was worse: although I went to work, I was taking ibuprofen by the handful, it seemed, and I spent the day breathing deeply and trying to focus on anything but the full-body tension in my muscles. It’s not the kind of sharp pain you get with a cut or a blow to the body. It’s a subtle but nagging sensation of tension paired with an ongoing urge to do anything to escape it: get up, move around, do something to break the tension. But at the same time it’s draining: I had no energy and no interest in trying to get up or move around. If I could have, I would have found some narcotics and curled up in a ball for the day.

I think I get the concept of pain now. I’ve talked to a lot of people who’ve endured extensive chemotherapy or other types of drugs, and sometimes they talk about pain. They talk about how it overwhelms them, how it takes over and makes it nearly impossible to do anything. They’re absolutely right. Pain affects everything. It simplifies the color palette with which you see the world. It shortens your vision, makes you see only what’s in front of you and makes you see only the essentials. You have to stop everything so you can cope, and the worst part is not knowing how long it will last.

I was lucky. At about the 48-hour mark, I felt the tension lift. Within a couple short hours, I got my body back. I could breathe again. I considered calling my oncologist and ranting at him for not warning me about the side effects of the Zometa, but I was so happy to be free of the pain that I let that idea go quickly. I just got on with living again. There must be something in the human brain that lets us forget how absolutely horrible something can feel, after it’s over.

I can safely say, now, that I’ll take it seriously when others talk about pain. It changes your interior world, turns it into something bleak and desperate. I can’t imagine what life is like for people with chronic, ongoing pain. I’m not sure I’d handle it very well. I do realize now that I tend to ignore low-level pain, which might be why this experience was so unsettling. I’m going to have to pay better attention to the early signs of future pain and deal with it before it escalates into something unmanageable. And, yippee! Only three more months to my next Zometa infusion. Can’t wait.

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musical me: wim mertens

In April 1979 a plane touched down at the Brussels airport. It was a slightly rainy but lovely spring day in Belgium, and it was the first time I’d set foot in Europe. I was beginning my two-year sojourn serving a mission in France and Belgium. After returning to the USA in 1981, I returned in the summer of 1983 for a couple of weeks of seeing London, France, and Belgium on my own, no restrictions. I had just graduated with a B.A. in French from the U and wanted some time to visit friends from my mission and discover Europe again. Along the way I spent a bunch of money collecting albums: French folk music, punk, new wave, and pop. Among the treasures I brought back was a 7″ single by Belgian composer Wim Mertens, titled “Close Cover.” It was the coolest thing I had, because on the b-side there were three tracks running in parallel grooves. You’d drop the needle of the record player down, and one of the three short pieces would play.

Close Cover 7inch

“Close Cover” was a magical piece of music. I used it for an opening theme to my French music program on KRCL, and over the years it’s been included in many musical compilations, from Windham Hill’s In Search of Angels to the dance chill-out compilation Cafe del Mar vol. 5 (in a misguided remixed version). It’s been one of Mertens’ two standout tracks, the other being “Struggle for Pleasure” that was used by a Belgian cell phone company as their theme music (and a prominent ring tone).  To most people in Belgium and the Netherlands, he’s the Proximus theme song guy.

Too bad, because he’s done so much more. Since 1980 Mertens has released over 50 albums, some containing 2, 3, or 4 CDs. Tons of music, some of it really hard to listen to, but much of it very accessible and lovely. Like this early piece, “Circular Breathing,” from the same period as “Close Cover”:

From a somewhat conventional start as composer of romantic/minimalist music, Mertens expanded until he was writing huge conceptual projects, releasing multi-CD sets that were monumental and usually listenable. While those compositional cycles had their challenges, they also had some amazingly lush pieces that really should be better known. A nice excerpt is this piece for strings (violin, cello, bass), “Al”:

Mertens has backed away from the giant cycles, and since 2000 has been recycling a lot of material in live albums and compilations. In Europe, he has performed regularly (if not frequently), but has chosen not to tour in America or even in the U.K. So it’s a bit of work to find his albums if you’re not in Europe. There are musical excerpts and an extensive list of works on his official web site.

I have almost everything he’s released, and for over 25 years it’s been a constant musical companion. All because I got off that plane in Brussels in 1979.

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I wonder if, when I get older or when my mind starts to go, or when I start to feel the imminence of death—or any combination of the above—I’ll start to obsess about my early life. Will my childhood become more immediately important to me than what’s going on around me?

My grandmother Virginia was 95 when she passed on to the next life, and she was a strong woman. She drove herself across the country for decades, keeping her driver’s license until she was about 90. Her health was really quite good, considering her age, until her last year or so. In hindsight, there was one sign that she was starting to let go of her mortal attachments in her last couple of years. She started to talk at length about her childhood. Not just tell stories, which she’d always done, but revisit old hurts and issues and family stuff, almost as if she was reliving those days.

She’d tell us about the rivalry between herself and her older sister. Virginia was a second child and had the typical animosity toward the favored first child. As she told it, Virginia was reduced to a life of servitude while her sister was treated like a princess. She would talk to us about farm life, working long hours, learning to cook, bottle food for storage, bake bread, do laundry, plant and harvest a garden, and so much more. When I was younger Grandma would talk about these things, but always in a positive way. There was a sense of pride in her upbringing and more than a hint of criticism about how lazy we modern children were.

In her last few years, a bitterness crept into her voice. Anger at her mother for the perceived preferential treatment of the first daughter, something she would never have spoken aloud throughout her life, came to the surface. It was as if she needed to process some troubling emotions, work through things that had never been resolved in her childhood. And so she would talk about her sister, her family hardships, and about being an outsider in a small-town high school—when an outsider was anyone whose ancestors had not settled the town in the late 1800s. Virginia seems not to have been a particularly generous or outgoing girl—she was serious from Day 1, very aware of how important it was to work hard and live her religion—and so as she grew older she retreated into self-righteous judgment of all those wild teenage kids in Sanpete County, Utah who were out having a whole lot more fun than Mormons oughtta have.

As I listened to her, I gradually saw in these stories a link to the elderly woman. They explained something about Grandma’s personality as an adult, how she tended to keep to herself in a protective way.  She was careful about who she counted as a friend, and held tightly to religious teachings as a guide for her life, much more than the influence of people around her. Ironically, for a woman who was deeply loyal to her church, she was often critical of neighbors and ward members and felt like an outsider.

Over time it came to me that in Grandma’s stories, I was seeing the shape of her life being sketched out. She’d talk about events 80 or 90 years earlier, and just by the way she described things I could see both an elderly woman who had a particular way of interacting with people and the young girl whose personality was not so different. We think we change during our lives, but in looking back we also have to acknowledge that there are core personality traits that define us. It’s like our emotional DNA or something, a simple sketch that fills in over the years but the shape of which never substantially changes.

When I ran across this family photo, I felt that I was looking at such a sketch. From the age of 2 to 6, I lived in a little frame house in Emigration Canyon, east of Salt Lake City. My dad was always taking photos, and this was a candid shot of 6 kids sitting around the kitchen table, taken from the front porch.

kitchen-windowI’m closest to the window, back to the camera. Don’t know where my younger brother is—maybe hidden by the window frame in the center. There’s a brown bottle of Winder Dairy milk, and our plastic cups, plates, and bowls, and that round Formica table (or was it painted wood?). It’s a perfect window into my early childhood. This is the kitchen where I grew up from being a toddler to an almost-second-grader. I love it. And as I look at the picture, it brings back the essence of our family, of my siblings, of that formative time when my  personality started to define itself.

I want to hold on to the positive memories so that when I’m losing my grasp on life, I won’t ramble about how mean my brother was or how I never got to be first at anything in my family or how Dad never had time to play with us. If I do start down that path, I really hope that people will be forgiving when I go on and on about all that I endured. Especially because those were really good years, after all. In many ways my childhood was a protected, safe little world. The things that seemed so unfair or dramatic at the time are no longer important. At some point, you learn to let go of the old stuff you’ve hung on to and decide what you want to keep. I don’t know that you can really change who you are in the process, but you can learn to change how you tell the story.

When mortality starts to feel more up front and center, we all have a chance to tie together the loose ends and make sense of our life. I’ve noticed that, since my cancer diagnosis, different family members are starting to carefully touch some old wounds and see if they still need attention. Maybe none of us want to be left with too much unfinished business in the end. And maybe it takes being shaken up by reminders of how fragile life is, to get us to start letting go of the junk that used to bother us.

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-sigh-

Cancer doesn’t care what you think, what you want, or who you are. It does what it does.

pelvisBone scan results today: three small lesions. A new development, not very surprising given my recent sharp rise in PSA. Back on Lupron today, starting Zometa next week.

T-minus-two-weeks and counting ’til the hot flashes start.

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extended winter

We always have snow in April on the mountain where we live, but today even the valley got a few inches.

tracks in the snow

When I walked to my car to go for a swim on my lunch break, only a few heavy flakes were falling. I watched several big, clumpy snowflakes hit the asphalt and break into pieces. It was hypnotic, and I was surprised that they didn’t just touch down and melt.

Then a snowball exploded on the ground a few feet away. Someone had thrown it toward a couple of guys getting into their car. They joked about it, and drove away. I haven’t thrown a snowball for a long time. Such a kid thing to do. But it made me want to throw one anyway.

April is here.

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