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[cancer] There's acceptance; then there's whatever the hell this is that I do - Lakeshore
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Jay Lake
Date: 2012-11-04 07:18
Subject: [cancer] There's acceptance; then there's whatever the hell this is that I do
Security: Public
Tags:cancer, child, family, health, movies, personal
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.

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mevennen
User: mevennen
Date: 2012-11-04 15:36 (UTC)
Subject: (no subject)
Trevor was absolutely fucking livid throughout his treatment. He's still pissed off. He was told by one of the oncology nurses that they prefer the angry patients because they tend to live longer. It's your illness and it's up to you how you respond to it. I am sorry about the movie, though.
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We're flat broke, but hey - we do it in style....: Fuck Cancer
User: kshandra
Date: 2012-11-04 17:58 (UTC)
Subject: (no subject)
Keyword:Fuck Cancer
I was about to make the same comment. The longer you're angry, the longer you'll fight. (And even if you beat the increasingly-long odds, it's okay to stay pissed off. It's been almost 17 years since gridlore was declared cancer-free, and to this day, hardly a week goes buy where he doesn't curse what it did to him.)

You and yours remain in my thoughts, Jay.
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inflectionpoint
User: inflectionpoint
Date: 2012-11-04 18:18 (UTC)
Subject: (no subject)
This! I am not fighting cancer and don't know a damn thing about it, except for what I've seen friends go through, but angry often means willing to fight and keep going when the other choice is to die.

So be angry. If it keeps you moving, it's good. I found that pure rage was what got me through the worst years of recovery from childhood abuse. That discomforts people and angers some of them, but I'm here. I'm functioning. That was not guaranteed. I beat some really bad odds, not because I was angry, but because anger let me move and fight and do the things that were the only way to even try to beat the odds.

Whatever works for you as best it can is what you need to do.

You are in my thoughts.
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cathshaffer
User: cathshaffer
Date: 2012-11-04 15:38 (UTC)
Subject: (no subject)
I endorse your negative feelings. I watched my mother go through this. She also suffered the indignity of severe GI disruption. She swung between diarrhea and constipation. More than once, we had to take her in on an emergency basis for intractible constipation. Once, I recall them saying she badly needed an enema, but they couldn't do it because her blood counts were too low. The pain, the loss, the limitations on your freedom--these things are intolerable, beyond unfair. You have all of the negative feelings you want. What is happening to you is not okay.

This reminds me of when I was in labor with my son. I had wickedly painful labor. No reason for it. It's just that some women labor more painfully than others. So all of the stuff we learned about "pressure" and whatever were not at all useful for me. When I went in to the hospital, the nurse on duty started coaching me in Lamaze breathing. I never took Lamaze, but I followed her instructions to make her happy. Throughout labor, every time I used the "breathing" through contractions, people would say, "There, that was better, you're doing so well," and if I screamed through the contraction, well, nobody said, "You're not doing well," but they weren't as supportive. Nobody said, "You go ahead and scream all you want, because that shit hurts."

The truth is, though, that I felt no better on the inside when I did the Lamaze breathing. It's just that my lack of screaming and crying in pain made everyone around me feel better. I think that can be a useful choice, and sometimes I would do that, knowing that if I was in pain, at least I wasn't distressing the people around me. Other times, though, especially later in my three-day ordeal, I just needed to scream, and I feel no regret or embarrassment over this. I feel like your situation is similar. You are suffering. You are entitled to express that. Your friends and family are in pain, too. It's kind of you to spare them when/if you can, but they are not in more pain than you are, so always remember that.

Much love,
Catherine
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mcjulie
User: mcjulie
Date: 2012-11-04 16:33 (UTC)
Subject: (no subject)
"You go ahead and scream all you want, because that shit hurts"

If I am ever in the position of guiding a pregnant woman through labor, I am totally using this.

Also, there's clinical evidence that screaming and swearing actually does reduce pain.
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cathshaffer
User: cathshaffer
Date: 2012-11-04 16:42 (UTC)
Subject: (no subject)
I am not at all surprised. As I recall, screaming didn't lessen my pain, but it was rather satisfying.
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kit
User: mizkit
Date: 2012-11-05 09:48 (UTC)
Subject: (no subject)
Hah. Not to hijack Jay's thread, but having had a nurse tell me "Now you've got that out of your system, stop screaming, it wastes energy," when I let out a scream during labor, I gave her such a look of hatred she left immediately and never returned.

More on point, seems to me that rage is an extremely appropriate response, and I think I'd be embracing it too.
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Swan Tower: swan
User: swan_tower
Date: 2012-11-04 16:15 (UTC)
Subject: (no subject)
Keyword:swan
My opinion, standing outside any situation even vaguely resembling yours, is of extremely dubious value -- but this makes sense to me. Acceptance as the opposite of denial, sure. But acceptance as the opposite of struggling? There may come a time for that, but if the time isn't now (and you're the only one who can judge that), then by all means, keep fighting.
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sdn
User: sdn
Date: 2012-11-04 16:35 (UTC)
Subject: (no subject)
Jay -- I am with you in rage. I send my energy and anger and love.
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mcjulie
User: mcjulie
Date: 2012-11-04 16:35 (UTC)
Subject: (no subject)
You have the right to anger. You have the right to as much anger as anybody has ever had.
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scarlettina: Furious
User: scarlettina
Date: 2012-11-04 16:45 (UTC)
Subject: (no subject)
Keyword:Furious
I totally endorse and support your anger. I'm angry. You have so much more cause to be so.
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houseboatonstyx: smaller-healing-buddha
User: houseboatonstyx
Date: 2012-11-05 01:34 (UTC)
Subject: (no subject)
Keyword:smaller-healing-buddha
Me too. I haven't been saying so, for various reasons.
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mlerules: Stitch HAT
User: mlerules
Date: 2012-11-04 17:09 (UTC)
Subject: (no subject)
Keyword:Stitch HAT
Well, if'n you like, have an at-home movie evening some time and we'll crowd around w/popcorn and visit and watch whatEVER. ox
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martianmooncrab
User: martianmooncrab
Date: 2012-11-04 17:46 (UTC)
Subject: (no subject)
Never go Quietly, make 'em work very hard for it.
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mmegaera
User: mmegaera
Date: 2012-11-04 18:42 (UTC)
Subject: (no subject)
If I were you, I'd be beyond furious. It's the most logical reaction to what's being done to you, IMHO.
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Kai Ashante Wilson
User: Kai Ashante Wilson
Date: 2012-11-04 19:19 (UTC)
Subject: (no subject)
I wonder if you might be able to go for half the movie one Sunday, and see the second half the next? Inconvenient and expensive, but a possibility.
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Matthew S. Rotundo: Radioactive
User: matthewsrotundo
Date: 2012-11-04 19:51 (UTC)
Subject: (no subject)
Keyword:Radioactive
Fuck it. If it's good enough for Dylan Thomas, it's certainly good enough for you and I.
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alumiere
User: alumiere
Date: 2012-11-04 21:22 (UTC)
Subject: (no subject)
Sorry about the movie, but I totally understand the anger. If I didn't have the underlying rage I would have given up a few years ago. Anger is an energy...
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Submarine Bells: backlit
User: submarine_bells
Date: 2012-11-04 22:22 (UTC)
Subject: (no subject)
Keyword:backlit
Have the people who criticise your anger got personal experience *their own selves* of dealing with cancer (or some other life-threatening and debilititating illness)? If not, then they don't get any input as to your reaction to it. Your emotional reactions are not a democracy, and they don't get to vote on them. Fuck that noise.

Anger makes perfect sense to me. While none of my own medical difficulties are life-threatening, they're all debilitating and painful at times. I get pretty bloody angry about them now and then. Cancer? You MOST DEFINITELY have the right to get as angry at it as makes sense to you.
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Debbie N.
User: wild_irises
Date: 2012-11-04 23:05 (UTC)
Subject: (no subject)
Speaking from the far periphery, I applaud your anger and support it however I can.
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a_cubed
User: a_cubed
Date: 2012-11-05 00:26 (UTC)
Subject: (no subject)
Anger is a natural response to something unfair, and what you have to go through is so absolutely unfair. "There never was a philosopher who could endure the toothache peacefully" (Much Ado About Nothing). Be angry, be absolutely furious, so long as you feel it's helpful to be so. Passivity is definitely not you.
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That Which Fights Entropy: eye
User: amberite
Date: 2012-11-05 00:43 (UTC)
Subject: (no subject)
Keyword:eye
I accept and support your anger.

I don't know if that always comes through, though, because I am the kind of person for whom sympathy and empathy work differently, and I only get angry myself on behalf of other people when it's likely to accomplish something, because otherwise I am too fucking intense and, as I would put it were this one of the cats, run around in circles biting my tail.

Anyway, there's this piece in there about boundaries, and mirror neurons, and... Support, like many other things, is an interestingly nonspecific word, and it makes me think.

I have a rather intimate question: are you upset that others don't support your anger (in ethos, in word) or that they don't share a personal understanding of it?

There's a kind of emotional support that I only ever get from people who... understand one of my more complex thoughts well enough to articulate it themselves independently of me. It's rare and spectacular and I can go many months at a time in perfectly functional relationships without it; it's a kind of confirmation that I'm as likely to get from acquaintances on the internet who are otherwise unlike me as from close friends and lovers; and yet there's a thing that clicks when that happens that doesn't click until it does.

Is that the thing you're after?

(Also, if YOU want me to write a scathing letter to your cancer, I will dust off ye olde Usenet flaming skills and set to!)
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Jay Lake
User: jaylake
Date: 2012-11-05 01:01 (UTC)
Subject: (no subject)
I have a rather intimate question: are you upset that others don't support your anger (in ethos, in word) or that they don't share a personal understanding of it?

More that I perceive others don't support my anger. I'm not upset in the sense of being angry at them, I'm upset in a more general sense of frustration.

Thank you for the offer of a cancer flame. I may take you up on that. ;)
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Msconduct
User: msconduct
Date: 2012-11-05 01:10 (UTC)
Subject: (no subject)
You're well-informed about cancer, so you probably already know this, but just in case: a study of 1,000 people with cancer found that emotional wellbeing had no correlation with survival time. So not only is it galling to try and be all sunny about it when you don't feel that, it's actually pointless. If anger helps you, fantastic! It's great that something does.
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joycemocha
User: joycemocha
Date: 2012-11-05 04:07 (UTC)
Subject: (no subject)
Anger is good, damnit. I can't imagine being a better cancer patient myself. I'd probably say fuck you, quit the job, and do what I need to do to live.

My friend was angry but gave up.

I read a useful phrase in a book about Asperger's, "smiling through the tears," said in the context of the attitude most people expect the parents of Asperger children to have. I figure this applies here with the fucking Hallmark Movie of the Week attitude (and yeah, I did see Brian's Song but now it makes me gag).

What you are going through sucks.

Are visits on non-chemo weeks a doable thing if you're called in advance?
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Jay Lake
User: jaylake
Date: 2012-11-05 14:29 (UTC)
Subject: (no subject)
Yes, I am visitable with modest logistical effort. ;)

(I'm even visitable on chemo weekends, I'm just not very interesting.)
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Tom
User: voidampersand
Date: 2012-11-05 04:53 (UTC)
Subject: (no subject)
When they say you're fighting cancer, it's not a metaphor.
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