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[cancer] Weekend update, some more thoughts on coping and death - Lakeshore — LiveJournal
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Jay Lake
Date: 2011-10-24 05:56
Subject: [cancer] Weekend update, some more thoughts on coping and death
Security: Public
Tags:cancer, child, food, health, personal

The good news is the Neulasta pain never materialized this past weekend. Given that it had been beyond outrageous during the equivalent point in the previous chemo cycle, I am deeply thankful. I have no idea if my prophylactic measures were effective (lots of Ibuprofen, heat and massage via a chair pad) or if the pain just found someplace else to toddle off to this go-round. Still, I will continue with the prophylaxis over the next four cycles, as Neulasta certainly is remaining on the menu. As a result, I was able to properly enjoy my daughter’s family birthday dinner last night at DeNicola’s, a favorite restaurant of ours.

As an incidental note, my continued emphasis on the BRAT(y) diet (with exceptions such as last night’s dinner), along with strategic deployment of digestive enzymes, Lactaid and Gas-X, has kept my lower GI fantastically calmer than has been my historical experience on chemo. It’s boring and a nutritional problem to boot, but the lack of extreme lower GI dysfunction is well worth the other challenges. I just feel starved for protein a lot of time, which is a bummer.

Coping wise, my inner negativity keeps bobbing to the surface. The current challenge is avoiding a sense of bitterness that threatens to flood me. This arises in turn from my sense of loss and limitation, which has been re-ignited by several recent life events. I honestly believe the negativity is being driven as much by my reduced cognitive and emotional faculties as I’m now in late-stage chemo as it is by my genuine emotions and worldview. In other words, it’s the drugs talking. That realization doesn’t keep the negative voices from feeling real in the moment.

Even my subconscious is getting into the act. Last night’s dream was about me losing my ballet career. (Ahem. There’s a childhood story behind that I’ll tell some other time.) A thinly disguised anxiety dream about my fears for Sunspin and my writing career in general, obviously. And about par for the current course of things inside my head.

Also, I note this article about Steve Jobs and the afterlife. I tell you right now that if I ever start talking about an afterlife, cancer will have swiss-cheesed my mind and robbed my intellectual integrity. I’ve spent my whole life, or at least the portion of it since I stopped being a churched Southern Protestant, recognizing that the very human wish to believe in an afterlife is blatant wishful thinking without a shred of objective evidence. (And no, the Bible does not count as objective evidence for anything except the existence of some ancient texts of dubious authorship.) Just because I am daily faced with the realities of the personal extinction of self is no cause to abandon reason. If considering the possibility of an afterlife was a comfort for Steve Jobs, I am glad for him, but that’s a road I’d only take after completely abrogating my intellectual principles.

Meanwhile, the week awaits. Chemo this Friday again, in the nonstop bumper cavalcade of fun that is my life with cancer.

Originally published at jlake.com. You can comment here or there.

Post A Comment | 18 Comments | | Link






Oz Whiston writing as Oz Drummond
User: birdhousefrog
Date: 2011-10-24 13:19 (UTC)
Subject: (no subject)
When you write about the drugs talking and how it's one thing to know that intellectually, but the voices are still strong in the moment, you're speaking about something like the joys of estrogen jags. I have known for years that I have them in PMS. They became much worse in perimenopause.

But when you're in the moment, in the grip of them, it's overwhelming and very real. They take a real life trigger and blow it all out of proportion. At some point in the incredible depression and despair, I realize what is going on, especially if I can see a calendar (I began tracking feelings and cycles). But I still have to get through it. Intellectually knowing what is causing it can help you ride the feeling, but the feeling is still there. Your body is still in the grip of that negativity you described.

You have my complete sympathy. I hope it passes for you and quickly.

Oz
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User: mmegaera
Date: 2011-10-24 23:18 (UTC)
Subject: (no subject)
You don't know me, but you said exactly what I was about to say. Jay's description of the drugs talking is remarkably like when my hormones start acting up.
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User: joycemocha
Date: 2011-10-24 13:50 (UTC)
Subject: (no subject)
Hell yes, it's the drugs and the reduced cognitive function. Stuff like that plays nasty, nasty tricks on your mind. The thing to do is to consciously work on disassociating yourself from those feelings when you can identify them as drug-caused and tell yourself it's the drugs talking.

As you noted, it's hard to do that and it doesn't keep the negative from feeling real. But it does require the constant self-check of "is this me or is this the drugs?" Right now, whether it's true or not, I'd rule the negativity as being chemically driven by outside influences (i.e., the drugs both chemo and Neulasta and the other stuff), for your own sanity.

And then try to do something positive for your own mental health, even if it's the tiniest self-indulgence. Be gentle with yourself. You're on the chemo homestretch for this duration. You've figured out how to manage certain challenging pieces of this round of chemo and that's a BIG STEP. You are able to take back certain parts of your life and function from chemo.

And hugs.
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threeoutside
User: threeoutside
Date: 2011-10-24 14:01 (UTC)
Subject: (no subject)
Just, *hugs*, dood.
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mlerules: Cruella
User: mlerules
Date: 2011-10-24 14:32 (UTC)
Subject: (no subject)
Keyword:Cruella
*eagerly awaiting the childhood ballet story...w/a grin*
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User: kshandra
Date: 2011-10-24 18:32 (UTC)
Subject: (no subject)
Keyword:Dancer
Indeed. :D
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W. Lotus: Peaceful
User: wlotus
Date: 2011-10-24 15:38 (UTC)
Subject: (no subject)
Keyword:Peaceful
Ballet? I would love to hear about that. :-)

FINALLY realizing that the various theories about the afterlife are nothing more than theories (no matter how righteously indignant some people are at that statement) is helping me live in the now instead of worrying over what may or may not happen after I die.
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Jay Lake: sanguine-superb_fairy_wren
User: jaylake
Date: 2011-10-24 15:41 (UTC)
Subject: (no subject)
Keyword:sanguine-superb_fairy_wren
My worry for after I die (whether that's next year or forty years from now) is for the people around me, specifically my daughter. I figure I'm like the bird flying through room, I get to be in the light for a while, then I'm done.
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W. Lotus: Peaceful
User: wlotus
Date: 2011-10-24 15:49 (UTC)
Subject: (no subject)
Keyword:Peaceful
It's interesting that I never worried about what would happen to the people around me after I die. That may be a function of believing I was easily forgotten/replaced. Also, I don't have kids, so it is easier for me to believe the people around me (all adults) would be able to heal and thrive after my death. Once I completed my estate planning package and made sure I have adequate insurance to cover my part of the rent for a long time for the people I live with, I felt I had nothing to worry about.

Are there things you can do to ease your worry about the people around you, or is this one of those things that's par for the course?

Some people seem to get great comfort in thoughts about the afterlife. I never did, even when I was an evangelical Christian. Dropping that belief has been a relief.
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Jay Lake: graffiti-rose
User: jaylake
Date: 2011-10-24 16:17 (UTC)
Subject: (no subject)
Keyword:graffiti-rose
I don't think any of us is easily forgotten, not by those who love us. And though I worry for my daughter, I also worry for my parents. Sometimes I see my death in their eyes, and that is heartbreaking.
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W. Lotus: pink lotus
User: wlotus
Date: 2011-10-24 16:31 (UTC)
Subject: (no subject)
Keyword:pink lotus
You are absolutely right about us not being easily forgotten. I used to think that during depressive episodes. I am much healthier, now.

No doubt your daughter and parents are fearful of your death. I imagine that's quite a burden to carry.

That's why I am so glad to see you write about the people who help you. It means you aren't carrying the burden alone. It also means all of them would support each other in the event of your death, too, so they wouldn't be carrying their grief alone.
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fledgist
User: fledgist
Date: 2011-10-24 16:03 (UTC)
Subject: (no subject)
For a while each of us is part of the weave.
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fledgist
User: fledgist
Date: 2011-10-24 16:02 (UTC)
Subject: (no subject)
They're not even theories (which to a scientist would be explanations of observed reality), they're wishes.
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W. Lotus: Peaceful
User: wlotus
Date: 2011-10-24 16:04 (UTC)
Subject: (no subject)
Keyword:Peaceful
The engineer in me agrees. However, out of respect for those who claim to have actually seen some kind of afterlife, I don't mince words. As long as they aren't trying to shove their visions/experiences/wishes down my throat, I'm good. :-)
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User: deborahjross
Date: 2011-10-24 16:05 (UTC)
Subject: (no subject)
A wacky thought just popped into my brain -- that there's a fixed amount of misery in cancer, so if your body is less, shall we say, tortured, then there's more negative energy available to tweak your brain.

Yeah, it's not only wacky but profoundly unhelpful. But it might undergo a transformation and wend its way into a story.
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Jay Lake: graffiti-shirley_you_jest
User: jaylake
Date: 2011-10-24 16:18 (UTC)
Subject: (no subject)
Keyword:graffiti-shirley_you_jest
I like it! (Well, you know what I mean.)
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cathshaffer
User: cathshaffer
Date: 2011-10-24 17:50 (UTC)
Subject: (no subject)
"Just because I am daily faced with the realities of the personal extinction of self is no cause to abandon reason. If considering the possibility of an afterlife was a comfort for Steve Jobs, I am glad for him, but that’s a road I’d only take after completely abrogating my intellectual principles."

Duuude! This is going to make your subsequent conversion so much more compelling! 8P
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barbarienne
User: barbarienne
Date: 2011-10-24 19:15 (UTC)
Subject: (no subject)
I've been insanely busy and not able to read all my favorite blogs lately. I'm sorry to come back and see you're having trouble with your emotional equilibrium. My heart hurts for you, Jay.

That said, I recall from your last round of chemo that you went through the same thing at about this same time, so yeah, I think you're right--it's the drugs talking.

Just a few more sessions, yes? (And of course, then all the waiting and testing for a few years...) Hang in there, bud. We're all pulling for you.
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