Tag Archives: life

Sunday is Pill Day

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I may have mentioned before that I have cancer. Barring a medical breakthrough, I will always have cancer. There is no remission in my future, just control.

This means I have a lot of different pills to take, at particular times of day. So I have one of these:

It’s a weekly pill planner. During chemotherapy, I had the primary medicines to fight the cancer (roughly four of them), the medicines to fight the side effects of the primary medicines (variable from 4 to 8, depending on how I was responding to the medicines), and the medicines to fight the side effects of the medicines that were to fight the side effects of the primary medicines.

And also the pills I was already taking for other stuff.

Not all of the medicines listed above are in pill form, but you can see that things were pretty complicated. Now that chemo is over, the pill regimen is more routine, but it is still an important part of every Sunday afternoon that the Official Sweetie and I sit down with a paper bag filled with pill bottles, open up all the little doors in the pill planner, and fill it up.

For a while things were complicated enough that it really did take two people to work out the rules for each day and get the right meds teed up. Now, it’s not so complicated that a single person could do it.

Except for the part when all the little doors are closed, the pills ready for another week, and Official Sweetie and I exchange a high-five and a kiss, and say, “another week.” Another week survived, is what we mean. It’s a moment of thankfulness, a moment of celebration. Another week of life. It’s like having 52 birthdays a year.

Here’s to another week, my friends.

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Today I got the answer, which was… no answer

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I have some stories from the last few months of chemotherapy. I intend to tell them here someday. Maybe even soon. That first day I learned what “Red Man Syndrome” is. It’s pretty rare, apparently. I have marks on my skin, slowly fading, that are echoes of the burns inflicted on my veins. I have thoughts, now, about hospital food.

But today was, I thought, the beginning of the next chapter. I sat down with my oncologist to discuss life after chemo. I expected he would schedule another scan to measure the success of the drugs, as well as a shift in regimen to fit my current circumstances. Instead what I got was much less… page-turny.

There is one number I live and die by, and that’s PSA. That number is very low now, and apparently as long as it stays low, I’m just coasting. I will never not have cancer. Remission is not to be hoped for. But if that one number stays low, then I may have a chance to die from something else instead, preferably a long time from now.

I was expecting today to hear “Here’s our plan of action!” and instead I heard, “there will be no action for the foreseeable future.” That’s actually a GOOD THING (I keep telling myself). Much better than “shit, I guess we better try something else.” On the other hand, the fact that there will be no full-body scan recognizes that even though we know there is cancer all over the place, exactly where doesn’t matter. That information is not actionable.

The number, PSA, will be measured every month for at least the next year, when I go in for my bone-strengthening goo (the goo slows the spread of cancer in the bones, as well as shoring up damage from the chemo). After that, the measurement might be quarterly.

It’s going to be very difficult for me to not obsess over the number (the measurement on the blood sample taken this morning STILL ISN’T IN YET), but perhaps it will be even harder for the Official Sweetie of Muddled Ramblings and Half-Baked Ideas. The number will be good until it isn’t, and we can drive ourselves crazy anticipating that ominous measurement, or we can just get used to the fact I have cancer and always will. The barbarians are in the forest, and it is only a matter of time until they rush the gate again. All we can do is watch closely and be prepared for when that happens.

The chemicals I ingest each day are getting nicknames: “Abbies” and whatnot. This is my life now, being gently awoken each morning by Official Sweetie to take my Abbies while my stomach is empty. Filling the pill planner each week (more about that later). Going to work like nothing ever happened. Maybe even writing again. Who knows?

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The Music in Our Heads

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Recently someone in my orbit asked (something like), “Does anyone else have a song in their head every moment?” It had honestly never occurred to me before then that there could be any other existence.

It’s a tricky question to ask, I suppose, because if I ask you “is there a song in your head?” the answer will be yes. Even if there wasn’t one before, there will be one by the time the question lands down in the thinking-zones.

This question wouldn’t have stuck in my head so much, I think, if it weren’t for a comment someone made to me forty years ago. “You always have a song for the moment,” she said. Or something like that. Back then I would let my inner sound track leak out through my mouth, I think. I was not conscious of it before, but sure enough, for any dang topic I had a little musical quip.

The music in my head is situational and responsive, but given lack of stimulus will fall into a few deep grooves. As I type this, I am turning up the headphones to NOT THINK OF one of my most hated bonded tracks.

While I try to control what is playing in there, sometimes successfully, sometimes not, there is no off switch. I have always assumed that is the natural human condition. I’m pretty sure I’m right. I’m pretty sure the answer to this episode is “well, duh.” But I’d never even asked the question before, so I thought I’d say it out loud. Is it possible to live without a soundtrack?

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Hibernation

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I have in my email in-boxes and message app threads a growing pile of unanswered correspondence. I have a long to-do list. Or lists, actually. I’ve not been exercising or even flossing. Writing has been reduced to random noodling.

Like most people my age, I have a couple of prescriptions. I was proud to support a local pharmacy, even prouder because the pharmacy served a community that is often overlooked. But while communication was challenging in person (they would see me coming and shift around so a better English-speaker was available), but on the phone it just became too much to deal with.

So instead of dealing with them, I did… nothing. One by one, I ran out of my medications. And still did nothing. Finally, I turned to a pharmacy that requires no human interaction whatsoever, and contributed to the destruction of small business in our nation.

Human interaction is work. Often this work is rewarding; friendships and relationships are cornerstones of the human experience. There have been times throughout my life, however, when those interactions have just been too much work for me. Driving to a party in a Seattle suburb only to turn around outside the house and go back to my hotel. Bailing on a balloon festival in Slovakia. It’s a long list.

Back when humans evolved, meeting new people was probably pretty rare. Maybe I haven’t adapted from those times.

That doesn’t mean I’m unhappy. I’m doing all right. But over the last few months I’ve just had a hard time developing energy for any challenge. I am fully aware that expending energy generates more energy, especially when referring to exercise.

There’s a catch, though. A trap. It is a somnolent quicksand that puts you to sleep even as it engulfs you, a quiet, comfortable tomb. If it is temporary, it’s hibernation. Recharging the batteries, as people say. I’ve curled up in that warm embrace before. But you have to wake up eventually.

I’m working on that now. I’m consciously working on waking up. I’m flossing and doing the little chores around the house. Writing more often, even if there is no focus. Wrote a really nice (tight, sorrowful) Allison in Animeland scene the other night. Words that served no purpose other than their own.

To my friends who have so patiently maintained contact, thank you. I really don’t deserve your faith, which makes me appreciate it all the more.

I’ll see you all on the Sunny Side.

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Life Hack

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When you’re staring at the stranger in the mirror, wondering who the fuck you are and how the fuck you got here, you may as well be flossing.

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What Have We Become?

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Today on the radio I heard an ad from McDonalds. It went like this: slow down from your hectic life and take a few minutes to wolf down a breakfast at our fast food chain.

To emphasize, we have the flag bearer of food with speed realizing that people aren’t slowing down enough to eat their breakfasts. So now they’re saying, “Hey, slow down, bud! Cut twelve minutes out of your day to have a McGriddle!”

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The Guy on the Corner

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I grew up in a small town, but one of my first visits to a large city carries with it an enduring memory. A man, skinny and bedraggled, on a street corner, shouting obscenities into his hat. I was just a kid back then, and didn’t understand the tragedy that man represented. I was just perplexed. I learned, somehow, later, to be afraid of people like that — maybe the reaction of the people around me that day informed that fear. Which is awful.

Yesterday, walking down the street in San Jose, there was another man standing on a corner shouting into the air, a stream of profanity. I just assumed he was on the phone.

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The Robots are Slacking

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Over there on Facebook, I got an ad for some kind of wedding-related thing. I wasn’t surprised to see it; in retrospect I was surprised that it took four months after changing my Facebook status to “engaged” for an ad like that to show up. Sloppy work, robots!

Oh, and in case you don’t all hang on my Facebook relationship status 24/7, I suppose I should announce here that Sam and I are getting married in December. Woo Hoo!

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Patio Life Returns

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Life is good.

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Changes in the ‘Hood

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This is a picture of the house across the street, taken on a recent Monday morning: 

Here is the same spot the following afternoon. Soon another home will appear, all shiny and new. 

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Bowie Thoughts

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Ziggy-Stardust-ziggy-stardust-8526918-497-584By now pretty much everything there is to be said about David Bowie has been, but sometimes sorrow, like wine, needs a little time to mature. David Bowie was never my favorite musician, and some of his songs don’t appeal to me much at all. Others, well…

I got Ziggy Stardust on cassette in the Safeway in Socorro, New Mexico, and while I’d heard plenty of Bowie before, and I’d even heard some of the songs on that album, I’d never immersed myself in his music the way I did as I played that tape at high volume while I drove across the desert. Big, buzzy guitars, lyrics that didn’t quite make sense in a poetic sort of way, all wrapped up in showmanship.

Many years later, I wrote a story that opens with a man in a spaceship, floating far above the world, a story I called “Tin Can.” Was I thinking of “Space Oddity” as I wrote it? Not really. But the song was there, part of my science fiction education, a story about loneliness as much as anything else. It’s a vibe that you can find in most of my favorite stories. There’s a little bit of Major Tom in all my favorite heroes.

My guilty pleasure: “China Girl”. I don’t hear that one mentioned in the eulogies that have sprouted up everywhere. Perhaps it just landed at the right time in my life, or perhaps I’m the only one on Earth with the taste and sophistication to appreciate it. That song’s kissin’ cousin, “Let’s Dance,” really doesn’t do much for me.

Recently, semi-accidentally, my sweetie and I watched Labyrinth. It’s… not very good. It sounds like all the dialog was re-recorded in the studio and without any regard for the environment the action was taking place in. Mr. Bowie, well, he does not succeed in rescuing the show. But I’m glad I watched. It was the last time I will experience David Bowie without the knowledge that he is gone, without wondering what he might do next.

And so we move on, flying through space, looking for something, not sure what, that was here a minute ago but doesn’t seem to be where we left it. That’s the hole we didn’t even know David Bowie was filling. He’s still here, of course, but everything he did is now tinged a little blue.

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Skewed Perspective

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On the way home from work today I got to hear what the V12 Mercedes SL 65 AMG sounds like. It’s a quarter-million dollar car that, despite impressive numbers for power and whatnot, and an equally impressive string of unnecessary letters and numbers in its name, “only” goes 155 mph. (The sound: imagine a hive of bees, except instead of bees it’s full of bears who don’t want to wake up but have to.)

The Santa Clara Valley (aka Silicon Valley) is not the place to get a good cross-section of what America’s driving. Based on a survey here, you might think that Tesla is preparing to challenge Volvo. (Tesla is the government-subsidized overpowered electric vehicle that allows wealthy people to be profligate while fooling themselves into believing they are environmentalists. I call it a watt-guzzler — but I wouldn’t turn one down). Tesla’s sound at a traffic light: sweet blissful silence.

In my time commuting in this area, I’ve stopped saying “Hey! a Maserati!” or “Holy Shit! A Lamborghini!” Top-end BMW’s and Audis are a dime a dozen. I got to check out the new Jaguar F-Type because there’s one that parks at my building. (It sounds… magnificent.) Other Jags, a Lotus or two… you know, the usual.

I’ve only seen one of those million-buck-and-then-some Bugattis, in stop-and-go traffic on the freeway. It wasn’t that impressive.

Not a single damn Viper. Other modern muscle is represented, but not the top shark in the tank. The lack of creature comforts doesn’t play well here, I suppose — although a brief look at the Viper Web site indicates that the interior has been upgraded quite a bit from the old days. Race-inspired my ass. (Although, of the sites I flitted past for ‘research’ on this episode, give Viper credit for having a section dedicated to braking. That’s a huge part of performance.)

Which brings me to wonder: How much of the awesome of these cars is ever experienced? How often are drivers inconvenienced because their V12 wonder-engine can only get their buggy up to 155 mph? I haven’t even taken my Miata up to top speed. In everyday driving, what benefit is that massive motor?

Answer: the sound. Once, walking down the street in a quiet Prague suburb, I heard the unmistakeable sound of an American muscle car, purring like a tiger kitten choking on shots of testosterone. Rubmble-rumble chaka-huh rumble… I turned to see a Coke-bottle Corvette with a vent in the hood, idling down the main street of Strašnice. The driver gently stroked the accelerator and the neighborhood shook with a sound not often heard in Europe. There’s anger in that sound. In Europe they ask “why?” “Because fuck you,” this car answered. I love that sound.

Jaguar has mastered a more civilized version of that sound, and the twelve cylinders under the hood of the Mercedes SL 65 AMG PDQ BYPFD 0I812 produce a pretty satisfying note. You may never drive 160 mph, but your car will tell the rabble around you that you could if you wanted to.

Unless, of course, you’re trapped in traffic with a Bugatti.

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My Better Half

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One of the great things about my sweetie:

I can ask, “Who’s that actor I can never remember?” and she will tell me.

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Happy Birthday to my Sweetie

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It was my first chance to spend the day with my sweetie on her birthday, and it was a big birthday at that. Yesterday my honey turned forty years old, and I was there to help celebrate. We didn’t whoop it up or anything, just let someone else do the cooking, opened up a nice bottle of wine, and watched a movie. We’ll be having a slightly larger celebration when more family is in town.

In the meantime, happy birthday, sweetie! Let’s do that again lots of times!

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Proof my Sweetie Loves Me

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“How’s the writing going?” People often ask me. “Not bad,” I answer, “but the selling isn’t going so well.” The problem is that I would much rather spend time writing a new story than trying to get someone to pay for a story I’ve already written. What I needed, I decided, was a way to keep track of where each story had been submitted and where next it should go. I had a partial implementation of that in place, but I thought maybe if there was something available at a glance right up there on the wall I’d do a better job keeping up.

Lo and behold! A precise measure of my slacking.

Lo and behold! A precise measure of my slacking.

Meanwhile, I’m working on a story that starts out with several separate threads that converge. Getting the timing right between the different bits has been a challenge, even with software that lets me rearrange bits easily. I thought to do color-coded post-its that I could rearrange, but first I needed to go out and buy the damn sticky notes. My sweetie was also dubious about the glue marks the sticky notes would leave all over the walls. She suggested a bulletin board.

Naturally I did nothing about these ideas, but last week I went to a friend’s house to mix beer and heavy machinery. When I got back the wall over my desk was adorned with two new features, already mounted on the wall and awaiting my pleasure. What a great surprise! The bulletin board is closer to my desk, as is fitting for its more interactive purpose while I write, while I only have to glance up and to my left to see how I’m progressing with submissions for my current short stories.

Act One of Dark War. This will get a lot messier.

Act One of Dark War. This will get a lot messier.

As far as the whiteboard goes, the stories listed cover everything from humorous flash horror to non-fiction, but most of the stories will fit at several of the markets listed across the top. Red X’s are rejections. Blue boxes are the markets to submit a story to next. Green dates indicate when I should hear back about a submitted story. As you can see, at this time only two of the eight stories are out there being read, with another awaiting a trip to the post office and another waiting for the reading period at the magazine. That’s two and two halves more than a week ago, so I have to say the system is succeeding so far.

On the bulletin board I have act one of Dark War. The threads are color-coded, and scenes that involve two threads are taped together with the significance to each thread spelled out separately. I will be finishing Dark War up as quickly as possible so I can spend the rest of the time before the World Fantasy Convention getting ready to sell The Monster Within. In the next day or two I’ll be compressing Act One up at the top of the board to make room for Act 2. Considering I’ve already written this damn thing twice, there sure is a lot of work to do.

But however much work there is to do, I have someone at my back who knows the best way to spur me on to greatness is to help me get the tools together to do my job well. That means a lot to me.

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