September 29, 2005

"Why am I so tired?"

1950s technology meets 21st-century woman.

It's like a scene from an old science fiction film. The helpless woman is bound under some huge machine, while strange alien creatures scurry around. Moments later, it is apparent that they mean her no good, she is clearly uncomfortable, and in pain. Nonetheless, they force her into different positions, aim their dreadful machine at different parts of her long-suffering body, and then leave...

If anyone ever asks me how it feels to be nearly through cancer treatment, I will get them to imagine that. That is just how it feels to Christine. As I write this, Christine has just four radiation treatments left, and we are both exhausted. Read all you like in those cancer-survivor blogs about how "cleansing" or "empowering" the experience was, the treatment sucks. It hurts and it makes you sick, and it makes you tired.

Her radiation oncologist continually apologises for the brutality of "1950s technology". After all this time, there is seemingly no alternative to beaming huge amounts of X-Rays into living tissue, to kill off cancer. Christine has an foot-square area on her right chest, extending into her armpit, which has taken the brunt of the treatment, although there was another treatment field on her back for a time. She has described it to me as "having an intense sunburn" renewed every day. The burning is so bad in places that she has dark-red skin, and weeping blisters.

The only upside here is that quotation at the start. Christine's mom, Helen, used to say the same during her treatment for ovarian cancer, to the point where the family would just roll their eyes at her whenever she uttered it. Cancer, and the associated treatments, are tiring in the extreme, and Chris keeps on asking this question. We roll our eyes and ask it right back, with a grin.

Being sick is tiring. So is caring for someone - it's stressful and hard, and occasionally, it seems to be without reward. So now and again, Christine and I look at one another, and one will ask "Why am I so tired all the time?", and the other will sigh, or laugh, and explain it all over again. But I'm whining again.

So, Apart from that, Mrs Lincoln, how did you enjoy the show...?

My father suffered a stroke the day we started packing the old house up, to move. Fortunately, he's made of stout stuff and was up on his feet again fairly quickly, and is now back at home, but this doesn't mean he's out of the woods just yet - he's lost some weight and is undergoing other medical investigations. Suffice to say that it's worrying me, and adding to an already-high stress level.

The house move went moderately well, although the nitwit packers failed to correctly label or unpack many of the boxes, with the result that our garage is still full of largely unopened crates, and I still haven't found my hair trimmer. Thanks to the good offices of the excellent Ferenczy and my Dad, I now have all the paperwork I needed to start the immigration paperwork. Now comes the waiting time...

Oh, it's only stress...

A couple of months ago, we did a count of Life Change Units. In a nutshell, one completes a questionnaire covering recent (six month period) life-changing events (each of which has a points value). At the end, the total number of points indicate the amount of stress one is under, and how likely it is to affect health. Things like marriage, moving house, change of job, health problems, change in family circumstances, all add to the count.

"So what?" I hear you ask...

• Well, with fewer than 150 LCUs, one has a 30% chance of developing a stress-related illness or having an accident in the following year
• For 150 - 299 LCUs that increases to 50% risk
• For over 300, the odds are stacked against you to the tune of 80%.

Ours was at 480, and there are things we have undergone that aren't even on the list. What, me worry?

...and finally...

In an attempt to lighten the load, we have taken to Sudoku and jigsaw puzzles. Christine has taken three weeks off work (her last treatment is 4th October, next Tuesday) and is spending as much time as possible resting. We're both pretty much exhausted all the time, and fully intend to have a celebration dinner date as soon as we are both in a fit state.

Tess is enjoying her new school. Funny how Chris and I were fretting about it, given all the other changes she's faced in the past six months, along with us. We went along to pick her up that afternoon, thinking we were going to face floods of tears, and had nothing of the sort. She's a great kid - I'm lucky to have married her mother, too.

Thank you to AnnaPanna and paraclete for tea.

...okay, this is the last bit. I have been trying to remember how, as a young boy (in the school choir), we managed to get Sheep may Safely Graze, from Handel's Messiah sequed into What a Friend We Have In Jesus and Deutschland über alles. Any ideas?

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(R) breast and (R) axilla - Caught in the medical machine - Going Amazonian - When the Breast Fairy Comes - So there we were, in Oncology, wishing for Star Trek technology - Weddings, and other Sundrie Diversions - Support the Amazons: A Dual-Function Ninjagirls Bakesale for Boobies - Seven Down, One to Go - 1950s technology meets 21st-century woman. - Getting better, but cancer SUCKS - An Open Letter to Macy's regarding Tits

The Unbearable Sadness of Seeing
(or, What I Wish I Could Tell You)

As I type this I'm watching you sleep in a three-by-three inch square on my screen. You've just rolled over, and I can no longer see your calm restful face, your softly closed eyes, your thin-lipped smile. You've thrown your sheets off, and the dim light from your desk lamp illuminates your slender back and my long-sleeved college dramat t-shirt I gave to you to wear when I left. As it always does, your hair has sprawled out across you pillow--you will be sporting extreme bed-head tomorrow morning, which you would normally attribute to me. If I were there I'd slide into bed behind you and pull the sheets back over your shoulder and dream with you.

You'll be pleased to learn that you don't snore at all. Your stomach and chest move only slightly when you breathe. Although you used to complain that I always hog the sheets and that you get cold easily, in my absence you have thrown the sheets off your own body--your left leg pinning them down over your right leg, your right hand holding them loosely. Either it's a hot night or you only get cold when you can blame me; but, it's autumn in the Netherlands, and Leiden has seen several showers today, and a cool after-rain breeze is blowing in through the vent (which I left open a week ago) in your window, so it must be the latter. I miss how you'd wake me up to sweetly scold me, and I'm not that sorry to say that I also miss stealing your sheets.

If I turn up the volume on my computer, I can hear the faint ticking of your wall clock and the steady buzz of your desk lamp. Occasionally I can hear the floor creak as your Chinese apartment-mate scurries from her room to the kitchen to the bathroom back to her room. (We never quite determined what she did, since she always seemed to do it when we were in your room.) Or I can hear your German apartment-mate opening and shutting her door as she comes home late from "The Duke," a live jazz bar in town. Or I can hear your Greek apartment-mate talking to her boyfriend over Skype--like we do--as her high-pitched voice travels through the thin walls of the former refugee bungalow which is now your dorm. Or I can hear you: if I turn the volume down just enough, I can hear the clock ticking above your computer, I can hear it when you now and then sleep-scratch your head, and I can hear the rustle of your sheets when you change positions. If I minimized the window to read the New York Times or write emails, I immediately restore it when I hear you move.

I get a warm feeling being able to see you sleep, thousands of miles away, not least of all because we may not be together for half a year--I a newly minted submarine officer, you a cognitive psychology graduate student. I can't say that watching you is exciting, but it isn't boring either. In a way, our webcams make our relationship more bearable: it's almost as though you're in the same room, being able to look at you and hear the sounds you make in your slumber. I could even wake you up with my voice if I wanted to.

But at the same time, in a not insignificant way, they make our situation more unbearable. Seeing you sleep reminds me how far away I am: I can see your bed but I can't lie in it; I can see your sheets but I can't adjust them; I can see your hands but I can't hold them; I can see your stomach but I can't rest my head on it; I can see your face but I can't kiss it; I can see your body but I can't embrace it. I can see everything I can't have.

Simultaneously, I am constantly aware of how much I love you and how long it will be till we're reunited. My heart struggles with the feeling that I'm closer to you and the reminder that I'm so far away. And while I wouldn't give up this amazing ability to watch over you while you sleep, an ocean and a continent away, I can't help but wonder if being able to gaze upon your world deepens my sadness at our separation with every little discovery of how much of you I miss.

Did you know that this website is still going to be here like 18 years from now and people will still be able to see this stuff? Long story short, I quit smoking at some point.

Noticing the Hurricane Katrina resource page was still up almost a month after the fact, I wondered out loud why there wasn't a similar resource page for Hurricane Rita.

I went through the daylogs from today through September 19, 2005 before giving up. There wasn't a single daylog entry referring to a lost loved one, the potential for a lost loved one, a lost treasure or other item, or anything else for that matter.

Even the first hit in Google for "Hurricane Rita victims" is "Network for Good : Hurricanes -- Help victims of hurricane Katrina..." At least past that the Rita hits started showing up.

Didn't people die, lose property, and lose loved ones during Rita's onslaught, too?

Even more ironically, the tenth hit from that Google search returned: "Texas Warns Against Exploiting Hurricane Rita Victims" from consumeraffairs.com. Rather than plead for help, the State of Texas would rather discourage people from helping.

Go figure. But that's the attitude I'm feeling from the mainstream media.

Even more ironically, Hurricane Rita is currently a nodeshell.

An ode to those who steal my heart.

Your dumb Hot Topic clothing and evidences of frequent drug use, from both how you conduct yourself in casual conversation and your appearance, captivate my heart in ways poets can only dream of.

Your affinity for shirts with slogans like "I used to be schizophrenic, but we're okay now" and "you laugh because I'm different; I laugh because you're all the same" sends waves of revulsion through my body, as I imagine holding you and feeling so overwhelmingly warm and at peace.

Your overdone black eyeliner etches scars into my heart. Your habit of spelling "fairy" as "faerie" is cuter than I can possibly form into words.

Your failed attempts at justifying cutting happy faces, pot leaves, and ICP iconography into your wrists with sharp objects as a method of dealing with "depression" is a clash of the titans; my gag reflex against my nonsensical obsession with you.

Your awkward interactions with my friends and others makes me smile a weak, awkward smile in my heart of hearts, while observing you trying to seem "super crazy" or "freakish" by saying offsetting things such as "I like dead things."

Your hair, which is an amalgamation of four thousand different colors, is a riotous vomit of hues inside my daydreams of us in a movie theatre. Your fingernails are caked with black nail polish, which has since started to crumble, just like my heart when I look at your pictures on the internet.

Your lame, alarmist life, rife with hormones, misguided anger, and angsty, crappy poetry send spirals of joy, color, and amour throughout my body.

You are destined for failure, and you will probably end up pregnant by your junior year of high school.

Your previous relationships have always been abusive (according to what you tell me), and you are convinced that you can never "love" again, and I grin sheepishly, knowing you're going to forget about all of that when we're sharing a kiss.

I can see through your pretenses, and your facade of despair. You are mediocre. You are uninteresting, and are about as intelligent as a bag of hair.

I want so much to be a part of your life.

People mean well... They really do... But sometimes...

I don't know how many of you out there have had the unfortunate experience of being hospitalized or have had to have undergone any kind of treatment or suffered through an illness for an extended period of time. Here's to raising my glass in hoping that it doesn't include the vast majority of us.

"You look good."

I know most people are just trying to be nice when they say that. Maybe that's because they don't know what else to say or don't want to say something along the lines of "You look like shit". Maybe they just feel awkward being around somebody who is sick and that's the easist thing to say. I'm sure that in most cases, it's meant to brighten the other persons spirits and make them forget about their plight for a little while.

I think it was two weeks to the day after open heart surgery that I made my way out to the local watering hole to drop in for a minute or two and say some hello's and catch up on anything that was important. I purposely went during the dead hours between two and four in the afternoon when the lunch crowd was gone and the happy hour regulars hadn't yet made their grand entrance. The few heads that were there turned in my direction and as the look of recognition hit their faces, I knew I had made a mistake. I was making them uncomfortable in one of the few places that they went in order to seek comfort. Hands were shaken and gentle hugs were exchanged and the litany of "You look good(s)" seemed never ending.

Then there was that awful awkward silence that ensued that some people have when they're around sick people. Pregnant pauses, tongue tied and unsure of what to say next, you could feel the conversation come to a halt. I think I choked down a glass if iced tea before I told them it was time for me to hit the bricks. You could almost feel the relief come back to the room when the door closed behind me and the last words I heard were that "Hey man, you look good!"

I can only imagine the conversation that might've taken place the minute I was out of earshot. How I looked like death warmed over or any other analogy that seemed appropriate.

After a couple of weeks went by, I had the courage to ask one of the bartenders how bad I looked when I tried to make my triumphant return. Her reply was something along the lines of that my complexion reminded her of a freshly emptied ashtray before you had the chance to wash it. She said she was afraid that if I stuck around, I might run some other customers off and cut into her tips.

Now that's the kind of honesty I can appreciate and I think I fell in love with her in that exact moment.

I still have my share of bad days when I don't feel like getting off the couch and wish that they'd left me on the table. I think it borders somewhere between self-pity and depression. Those days are getting fewer and farther between as time moves on. I can almost look in the mirror and see little pieces of me coming back on a daily basis.

People have pretty much stopped telling me that "You look good" and our conversations have returned to the more mundane things in life like football, women and politics.

I'm almost back...

Ugh. That one word describes my college experience so far. Every day there is a new headache to deal with in terms of going to school. All the people in my classes are as a general rule flip-flop wearing chowder heads. And why the flip-flops? Why!!! It’s so confusing to me to see some female wearing a very done up outfit that is bordering on fancy and then BAM flip-flops. It says to me “I care about what I look like but when I got to my shoes I just couldn’t be bothered to put any on.”

What if you need to run somewhere? What if there is a fire or it rains? What bothers me more are the frat guys walking around trying to look real tough and menacing by squaring there shoulders and stomping around. They might even do an ok job of it, but not with the flip-flops they're wearing. I cannot fear someone in flip-flops. God forbid it’s one of those skateboard riding people riding a skateboard with flip-flops. Every time one passes me my mind fills with visions of shredded skin and crushed toes bent at angles to the mangled flesh of the foot.

Flip-flops were not designed for physical activity. Accept this fact and stop wearing them all the time.

Every time I pass an office supply store the urge to go in and buy a big box of thumbtacks is so strong…

Defining moment of my college experience to this point: walking by the parking permit building and seeing a sign above the door “because you’ve got better things to do than wait in line all day” with a line of people pouring out of that very door and stretching down the sidewalk. That image may be applied to anything at this school.

I don’t even know why I’m bothering to post this. I guess my frustration has reached a point where it needed to come out somewhere. I had all these hopes that college would be this bastion of intellectualism smart people yammering about smart things. Instead it seems to be the people I knew in high school only a touch older. College has also pointed out to me how poor I am. Where do these people get all the money for the ipods and the laptops? Are they being handed out for free somewhere? Why has no one told me?

I’ve also learned that being a music major means getting screwed in the ass on a daily basis. The amount of work involved and the number of credit hours needed are absurd.

If Mozart were a baseball player he would have been a junkball pitcher. I have started practice for a November 13 concert with my church's choral society { http://first-church.org/Choral.htm }. We will be singing Mozart's Coronation Mass opus 339 and his Solemn Vespers Mass (Opus 317) accumpanied by an orchestra. The concert i sang last March gave me confidence. My previous musical experience was being the bad guitarist in a very bad garage band. But when push came to shove I hung when it came time to sing Palestrina and Durufle.

First practice stripped my ego away. Mozart is a changeup artist. We're to going to do some half notes, a couple real eights, sixteenth, whole, some quarters, then you'lld drop an octive, up, down, up down, to the middle ho. Fast. Slow. Rest. The a solo, which no one has asked me to sing. So I'd better clam up.

Really it's like pitching a baseball. Fastball high and tight, low and outside curve, two fastballs, a hard slider at the knees, then a change. Inside, outside, at the letters then the knees. You never really know what is coming.

I found myself looking at several called third strikes and swung at a few more out of the zone.

The worst part is that that I'm sorta kinda picking up on reading music. It may be that I'm just picking up cues from everyone else, but the notes have begun to make sense. I can sort of see the music coming, but not well enough to really execute when the notes come hot'n'heavy. But Mozart's tunes are happy, playful, even joyous. And fun.

It is some surprise to discover how much I enjoy singing classical music. When we do something right it is lovely. It is an honor to sing with these people.

Want to know why? Enjoy this: http://first-church.org/ChoirTourMM.htm