Jay Lake (jaylake) wrote,
Jay Lake

[cancer] There's acceptance; then there's whatever the hell this is that I do

tl;dr summary: cancer sucks and I hate it

This morning I am reluctantly admitting I'd probably better not go see Cloud Atlasimdb ] in the theater today. Which is basically admitting I won't see it in the theater at all. Pretty much by definition, today is the best day I'll have until about next May or June, with the possible exception of a few days in January during the chemo break and right before my next liver surgery. In other words, it's not like I'll be more up to the movie later on.

This observation about today being my best day is true of every off-chemo Sunday. The intensity of many side effects, most specifically the crushing fatigue, is cumulative with each chemo session. Sunday after chemo, when I have slept freely and long, and not gotten up to deal with work at 6 am as I do on weekdays, is my best day in each cycle. And each cycle leaves me another layer embedded in the fatigue and the myriad other problems.

I was already having serious doubts about the movie based on concerns about my ability to tolerate the nearly three-hour run time. Counting previews, etc., Cloud Atlas is close to three and a quarter hours in the theater seat. Sitting up for extended periods without any lie-down break whatsoever is hard for me, due to fatigue and persistent GI issues. (The only thing that keeps me at work all the way through chemo is that I work from home, so I can take phone meetings and short breaks stretched out in my recliner.) Sitting in the dark tends to put me to sleep even when I am healthy; with the chemo fatigue layered over it, I really wonder how I'll last that long.

However, yesterday's lunch really capped it off. As mentioned here on the blog [ jlake.com | LiveJournal ], the family had our November babies birthday party at Benihana. That's pretty much the opposite side of the Portland area from Nuevo Rancho Lake, and is a 30+ minute drive even when traffic is nominal. I rode over in the backseat of my (step)Mom's car, heavily veiled from the sunlight and mostly trying to rest quietly. About ten or fifteen minutes into the trip, I began experiencing severe and very painful cramping in my lower GI. I spent the last fifteen or twenty minutes of the drive holding my guts in and breathing shallowly, praying I wouldn't shit myself and my Mom's car on the way to the party.

This went on all through lunch, with me making a painful and lengthy break to the bathroom every fifteen or twenty minutes for the better part of two hours. Things settled down in the last half hour or so, and I was able to make the ride home without significant further distress. As I said at the time, I was amazed that the restaurant didn't call the cops and tell them I was selling dope in the bathroom or something.

This episode wasn't a part of the regular cycle of chemo side effects, which I understand pretty well and have documented extensively on this blog. It was just random GI weirdness, of the sort that I experience on chemo at intermittent moments. The point is, this was random. Unpredictable. As many of the chemo effects can be.

I spent the rest of the day considering what kind of experience I'd have watching Cloud Atlas if the cramps came back while I was at the theater for over three hours. Yesterday was so awful that my desire not to go through that again anywhere away from my own home is overwhelmingly powerful. (Obviously, my desire not to go through that again at home isn't any less powerful but too bad for me. Assuming I'd like to live a few more years, I have to put up with these horrid lower GI cramps, just like all the other indignities of cancer and its treatments.)

And so cancer takes something else away from me. The ability to go out and enjoy an interesting movie with friends. As it takes so much else away from me.

I hate this with a torrid, pointless passion.

Many people have commented on this hatred of mine for the process. Some in loving critique, some in downright criticism, some in gentle despair for me. To my perception, almost no one in my circle of family and friends and loved ones endorses or supports my strong negative emotional reactions to my treatments. Over these past four and half years, I've heard a lot about acceptance, about not fighting the process, about letting the treatments take their course.

Acceptance? Fuck that noise.

Objecting strenuously and cultivating profound anger is how I survive.

There's a deep level at which I accept this. I am not in denial, I am not avoidant, I pursue a clear-eyed understanding of a disease the course of which can only be described statistically until after the fact, when it will probably be too late for me personally to know the difference. I consent to treatment, as informed as possible about the side effects, likely outcomes and disease progression. I am diligent about my medications and procedures, about my medical appointments and follow-ups. I embrace the logistics and necessities of being a cancer patient, because I must.

If I did not, I would have been dead in May of 2008. If I did not, I would have been dead again in early 2010. If I did not, I would have been dead again this last spring. If I did not, I would be dying now, probably breathing my last next spring.

I am not stupid. I want to live, however short and wretched the rest of my life is likely to be. [info]the_child needs me, even broken and failing. My family and friends and loved ones need me. I need me. It's not like I get a second chance, later.

So if that's acceptance, I accept this disease and its requirements.

But I reject what it does to my life. How it bends the simplest things — a family lunch, or a trip to the movies with friends — all out of recognition. How it restricts everything I do. I reject this with an anger and a passion that even I with my facile power of the written word may not ever be able to fully describe.

That anger and passion drives me forward. That rejection motivates me to get up and do something every single day that it's possible for me to do anything. I am no more capable of being a wan and smiling patient dying gently of Interesting Soap Opera Disease while quietly inspiring those around me to be thankful for their lives and health than I am capable of flapping my arms and flying to the Moon.

This is not fucking Hallmark Movie of the Week. This is not a very special episode of Blossom. This is cancer, and it's eating my life.

So acceptance? Like I said, fuck that noise. I'll spit in cancer's eye until my mouth runs dry. I'll bitch and rage and hate until I can't croak the words or string together the thoughts. Cancer will probably get me in the end — that likelihood approaches closer to certainty with each recurrence — but it won't get me easily or quickly or willingly.

Because if I accept this thing, then it has already won. I will die fighting, or live to tell the tale. That's how I get up and go on every day. Pure, mean-spirited rage.

In the mean time, though, I still don't get to go to the movies. That makes me sad.

Tags: cancer, child, family, health, movies, personal

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