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[cancer] Some semi-random further thoughts - Lakeshore — LiveJournal
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Jay Lake
Date: 2012-11-27 05:22
Subject: [cancer] Some semi-random further thoughts
Security: Public
Tags:books, cancer, friends, health, personal, religion
Yesterday's post about why I write so much about cancer [ jlake.com | LiveJournal ] drew some pretty interesting comments. I responded to a number of them in place. Both composing the post and reading the comments have sparked some further thoughts.

In no particular order…

One thing no one has ever said directly to me, or about me insofar as I'm aware, is that I've brought the cancer on myself through my emotional or spiritual conduct. I've seen this claim made in other contexts. This sort of victim-blaming is one of the most pernicious, evil things I can imagine saying to a cancer patient. If anyone ever did say that to me, I would violate my policy of not trying to create Internet dogpiles and tear them a new one up, down and sideways, right out in public. First of all, it's silly magical thinking of the first water. Second of all, it's just an unspeakably vicious way to talk about the disease.

On a related note, something else I have not seen, to my mild surprise given some of my history with certain other people on the Internet, is any assertion that I would somehow deserve this for being who I am. Sort of a real life version of the "die in a fire" thing some people like to say about people they disagree with. Again, magical thinking; again, vicious. Again, very grateful I haven't run into it.

So, yeah, I'll cope with comments about my dramatic oversharing.

Speaking of comments, [info]cathshaffer pretty much boggled me with this one:
Fifty years ago, if you got a cancer diagnosis, you knew it was pretty much the end. Put your affairs in order, you are dying soon. Medical science has produced effective treatments that can prolong life significantly, and even cure the disease in some cases. Although on the face of it, that's a great thing, what has resulted is a uniquely tortuous liminal journal between terminality and life, one for which humans are in no way emotionally equipped. Are you equipped for a terminal diagnosis. By the grace of god, yes, you are. Are you equipped to spend five or ten years or your life *not knowing* at any given time whether you might be terminal? Absolutely not. Even the cure rates are cruel. In most cancers, it's a minority who are cured, and even the most dire-seeming cases have their rare cures. Is that a good thing? For the person getting cured, absolutely. For all of the rest of patients, who have been thrust into a Las Vegas slot machine situation, stuffing quarters in to save their lives, it becomes the highest stakes gamble of their entire lives.

If someone thinks you're being over dramatic, or over sharing, they better PRAY TO THE FUCKING ALMIGHTY that they never find out for themselves.


She reminds me of something I've said to my therapist a few times, that it would almost be a relief to have a terminal diagnosis. That's not suicidal ideation, and it's not a death wish in the more prosaic sense. It's my response to what Catherine so brilliantly refers to as "a uniquely tortuous liminal journal between terminality and life".

I really need to do some deep, patient thinking about that. Her words do a wonderful job of encapsulating so much of my personal anxiety and fear.

On a slightly related note, a friend of mine (unconnected to the writing community or my online community either one) died over the weekend very unexpectedly of heart failure. We weren't particularly close, but we've been on good terms for years as we crossed paths fairly often, and he had been very supportive of me in my cancer journey. His life was quite different from mine, and Jesus was very important to him, so perhaps that is some comfort to his wife and children. I am very saddened. I cannot imagine death is any easier when it comes swiftly as it did to him. I suppose he had less time to fear, but his family had less time to prepare. There are no good answers here.

Also, something I noted in my most recent re-read of Lois McMaster Bujold's Cryoburn (a novel that exists entirely for the purpose of setting up the last three words of the book, insofar as I'm concerned):
“All the worry people expend over not existing after they die, yet nary a one ever seems to spare a moment to worry about not having existed before they were conceived. Or at all.”


I like that a lot, though I can answer it well enough. Before I existed, there was no me to worry about being conceived or wonder what would happen next. Before I die, there is a me to worry about mortality, and wonder what will happen next. After I die, well, I'm just 10,000,000,000,000,000,000,000,000,000 atoms looking for a place to go. My cadaver will be donated to the medical school associated with the hospital where I receive treatment, to help train future doctors. My memory will live on in the hearts and minds of everyone who knew me, whatever they think of me. And, for a while, my books and stories will yet stand on some people's literal and metaphorical shelves. I'll be a grace note in a few personal histories, and in two or three generations more, I'll be little more than an entry in some genealogical tables and a footnote in the history of science fiction and fantasy.

I'm okay with that. I mean, I won't be here (or anywhere else) to know the difference. Erase me from history, erect statues to me, it's all the same once I'm gone. That's atheism for you.

It's what I do while I'm here that matters.

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the_blue_fenix
User: the_blue_fenix
Date: 2012-11-27 14:17 (UTC)
Subject: (no subject)
Totally with you on the last-three-words-of-Cryoburn thing.
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mevennen
User: mevennen
Date: 2012-11-27 15:33 (UTC)
Subject: (no subject)
Yes, we had a certain amount of 'blame the victim' stuff - something unexpressed, in T's case (it was throat cancer). Because T is notoriously shy and reticent....

I'm never sure how these people justify cancer in animals. Childhood issue when a puppy? Something the cat can't bring herself to say?
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User: mmegaera
Date: 2012-11-28 01:16 (UTC)
Subject: (no subject)
Or cancer in small children, unless they believe in reincarnation and a really nasty version of karma, which I don't think is the case for most people who say evil things like that.
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cathshaffer
User: cathshaffer
Date: 2012-11-27 16:21 (UTC)
Subject: (no subject)
Aw, thanks for the props. That comment is more candid than my usual internet postings, because a serendipitous combination of typos caused me to post before I could edit, and I just let it stand. Maybe I should be candid more often. It makes me a little angry that people should seemingly want you not to talk about your cancer experience in your own blog. I mean wtf.
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mcjulie
User: mcjulie
Date: 2012-11-27 16:30 (UTC)
Subject: (no subject)
Agreed, so very very much.
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mcjulie
User: mcjulie
Date: 2012-11-27 16:33 (UTC)
Subject: (no subject)
It occurs to me that what you're going through is just a bit like what soldiers in the middle of combat go through. Every time you dodge a bullet, you can think, "Whew! Dodged that bullet!" but you're still in the middle of the fight and the bullets keep coming.

I, for one, am grateful that you're sharing that journey with us so eloquently.
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Jay Lake
User: jaylake
Date: 2012-11-27 16:38 (UTC)
Subject: (no subject)
Thank you.
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ladyblue56
User: ladyblue56
Date: 2012-11-27 17:08 (UTC)
Subject: (no subject)
You can't hide your truth just because it inconveniences other people.
Thank you for sharing the journey as it unfolds, the good and bad of it.
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cj_ruby
User: cj_ruby
Date: 2012-11-27 17:34 (UTC)
Subject: victim-blaming
I grew up in a Fundamental Baptist culture: attendance 3 or more days a week, a church ACE school, the literal belief of the Bible, etc... I had been a skeptic of the culture since I was 12 and couldn't get a straight answer on where dinosaurs came from, or went. My mom got cancer in 1984 and died in 1988. In 1990 I was arrested for battery after popping a few rights into the face of my former teacher and associate pastor. We had run into to one another at a gun & antique show. He asked me where I'd been and expressed sympathy for my family, and then proceeded to tell me that mother would have recovered if she had had more faith and I hadn't forsaken god's will. The charges were dropped to save the pastor embarrassment.
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Jay Lake
User: jaylake
Date: 2012-11-27 17:44 (UTC)
Subject: Re: victim-blaming
Sigh. Yeah.
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Keikaimalu
User: keikaimalu
Date: 2012-11-27 18:18 (UTC)
Subject: (no subject)
Uncertainty really can be worse than even the worst certainty. I don't know why that is.
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Debbie N.
User: wild_irises
Date: 2012-11-27 20:09 (UTC)
Subject: (no subject)
Speaking strictly for myself, what some folks are calling "oversharing" is a large part of why I read your journal obsessively. My deeply beloved younger brother (noticeably older than you) is on the same path you're on, and it seems to be moving faster. Today, two years after his initial diagnosis, he called to tell me that the doctors say "six to 24 months" barring the same kind of unlikely reprieves you are looking at.

I don't tell you about him to add to your burdens, and I hope I'm not doing that unintentionally. I tell you to let you know that because he doesn't share much, your sharing is golden to me, and I value it more than I can say.
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Jay Lake: flowers-berries
User: jaylake
Date: 2012-11-27 20:16 (UTC)
Subject: (no subject)
Keyword:flowers-berries
And this is a big part of why I write as I do. Because it helps. Don't worry about mentioning him here, you are not adding to my burden.

Also: thank you, and good luck and good health to your brother.
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Debbie N.
User: wild_irises
Date: 2012-11-28 06:07 (UTC)
Subject: (no subject)
Feels to me like the thanks go all your way, but whatever.

What's the best tangible present anyone gave you while you were chemo-sick?
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Jay Lake
User: jaylake
Date: 2012-11-28 14:49 (UTC)
Subject: (no subject)
What's the best tangible present anyone gave you while you were chemo-sick?

Wow. Interesting question. There have been very well received functional presents (the humidifier Lisa bought me, for example). There have been some wonderful intangible presents, like visits from out of town friends. And I always like things that make me smile -- little toys and whatnot. But to your specific question, probably the quilt my (step)mother made me featuring my book covers.

http://jaylake.livejournal.com/2687763.html
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kellymccullough
User: kellymccullough
Date: 2012-11-28 00:54 (UTC)
Subject: (no subject)
Your cancer blogging is a valuable service. Period. Full stop. I lost a friend of 30 years to the damned disease this spring, and reading your journey allowed me to be there for him in small ways that I wouldn't have understood the importance of nearly as much without it. I didn't do as much as I would have liked, but I did more than I might have otherwise, simply because I had a much better idea how to relate to his dying and I owe you for that.
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Jay Lake
User: jaylake
Date: 2012-11-28 14:29 (UTC)
Subject: (no subject)
I am glad I could help, in my small way.
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a_cubed
User: a_cubed
Date: 2012-11-28 03:54 (UTC)
Subject: It's what I do while I'm here that matters.
"It's what I do while I'm here that matters."
Absolutely. I have my own inverse version of Pascal's wager:
"If god exists and I'm damned to hell for all eternity, then 'what the hell' - there are so many different religious options out there that the chance of having picked the right one are vanishingly small anyway."
"If god doesn't exist and I live as an ethical person according to the best ethical guidance I can find and figure out for myself, irregardless of the irrational elements which all religions add to their useful considerations of ethics, then I have lived the best life I could while I am alive. The only other choices are nihilistic narcisissm or subjugation to useless unethical constraints."
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Rick Moen
User: rinolj
Date: 2012-11-29 22:07 (UTC)
Subject: Re: It's what I do while I'm here that matters.
a_cubed, I'll see your version and raise you mine.

-- Rick Moen
rick@linuxmafia.com
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Rick Moen
User: rinolj
Date: 2012-11-29 22:05 (UTC)
Subject: (no subject)
'It is a truth universally acknowledged that a single man possessed of a health problem, must be in want of clueless and stupid personal commentary.' -- Jane Awful, _Trolls and Cretinousness_

If I did think you were oversharing or overdramatising, I'd keep my opinion to myself, because, y'know, basic courtesy plus the fact that this is your personal journal and thereby permitted to be, y'know, personal. It's a blog: Personal is what it says on the tin.

About the uniquely tortuous liminal journal between terminality and life: My personal opinion (yours for a small fee and waiver of reverse-engineering rights) is that knowing what's likely to kill you but being unclear on exactly when is actually not a whole lot different from the normal default existence -- and arguably not different at all. But maybe I'm just morbid. ;->

-- Rick Moen
rick@linuxmafia.com
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Jay Lake
User: jaylake
Date: 2012-11-29 22:08 (UTC)
Subject: (no subject)
On that last matter, you of all people should know. And while you're right in principle, there's something different about being extremely clear on which bullet has one's name on it.
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Rick Moen
User: rinolj
Date: 2012-11-29 22:34 (UTC)
Subject: (no subject)
My particular perspective is heavily coloured by having grown up with no emotional expectation of surviving even to age 50 (let alone being asymptomatic and athletic at 54). And that was because my father, Pan American Captain Arthur Moen, went to work early on December 26, 1968 as a healthy, happy 47-year-old father and husband -- and, after just a few seconds of horror and panic, was very definitively deceased.

There are times I think Dad got a really good deal.
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