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[personal|cancer] More reflections, plus sex! - Lakeshore
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Jay Lake
Date: 2009-12-21 05:12
Subject: [personal|cancer] More reflections, plus sex!
Security: Public
Tags:calendula, cancer, health, personal, seattle, sex
It occurred to me this weekend that I haven't made a writing process post in a long time. This irks me a bit, as my core identity is that of a writer, and one of the core purposes of this blog is to talk about writing and publishing. One of cancer's smaller thefts, to be sure, as obvious as my distractions have been.

Spent a delightful weekend in Seattle with calendula_witch, shelly_rae and markferrari. We attended tbclone47's party, then later shelly_rae and I went by a party at Red Rocket Station. Sunday included a nice six-cornered brunch with Kij and Kessel before we drove home.

And boy did this weekend drive home the "spoon theory" that the MS and some other communities talk about. My spoon issues are transient, not permanent, but they're very real. Making a 400 mile round trip three days after my second surgery in three weeks was perhaps not the wisest way to manage my spoons, but I'm glad I did it.

As brendacooper said to me at tbclone47's party, "I'm used to seeing you with more energy."

Sleeping has gotten more difficult these last few nights. Both sides still hurt, more in the sense of "extreme discomfort" than "post-surgical pain". And the swelling is sufficiently reduced in my port implant that I'm becoming extremely and continually aware of its presence inside my body. Weird, very weird.

Likewise, the experience of a continual cycle of exhaustion, recharge and energy is a preview into chemotherapy. Those of you know me IRL know how I just race forward all the time. No racing for this Energizer bunny, not for months to come. I've got a couple of strong weeks ahead of me, then I'm in the spoon drawer until at least July.

As an aside to the spoons issue, I also have begun to note patterns in my exhaustion. If I rest before I'm wiped out, more frequently and for shorter periods, I get more done. Prophylactic naps are in my future. Conversely, if I'm engaged in a high-intensity activity like driving or sex, I can way overshoot my limit without realizing it until I've wound down. Then my need for rest is overwhelming.

As an aside to chemo, albeit an important one, last night calendula_witch and I realized that the sexual restrictions on chemo are much more complex than advertised so far by my medical providers. I've had discussions about condom use (I will be the Toxic Avenger, and pretty much every bodily emission of mine will be dangerous), being told by different providers everything from "a day or two after chemo" to "constantly until several months after you are done." But that assumes a very simplistic view of sex and sexual acts. They've been a bit coy about details. For example, I'm supposed to work very hard to avoid bacterial infections. Does that mean my performing oral sex is right out? So a deeply frank phone call to my oncology nurse is in order shortly, simply so I know where to set the pins.

Lots going on, lots to think about, and hey, it's the solstice! The sun returneth to my sky! Though calendula_witch leaves for San Francisco shortly, which dims my world a bit.

Happy Solstice, all, and stay healthier than me.

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fjm
User: fjm
Date: 2009-12-21 13:43 (UTC)
Subject: (no subject)
I wonder if you might not be better off talking to someone from an HIV organisation? They frequently deal with cancer and chemo issues, but they are far less likely to blush over the sex.

If you can't find an unblushing advisor in your own state, I recommend the Terence Higgins Trust in the UK.

Edited at 2009-12-21 01:43 pm (UTC)
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desperance
User: desperance
Date: 2009-12-21 18:31 (UTC)
Subject: (no subject)
Yup, this. Much recommended.
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cathshaffer
User: cathshaffer
Date: 2009-12-21 19:52 (UTC)
Subject: (no subject)
I disagree. The advice needs to come from the physician and staff who are supervising the regimen. They have treated hundreds or thousands of patients with the same diagnosis and the same medicine--if Jay has a question about the instructions, he needs to ask the people who gave them. There's no need to worry about embarrassment. Jay is not the first human with cancer who also has sex sometimes.
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ozarque
User: ozarque
Date: 2009-12-21 14:18 (UTC)
Subject: (no subject)
This too shall pass.

We are all thinking of you, and holding you in our hearts.
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Kari Sperring
User: la_marquise_de_
Date: 2009-12-21 15:05 (UTC)
Subject: (no subject)
Restructuring to learn to pace oneself is one of those things taht are easy to think of and frustrating to implement. But you are more determined than most, I think. More good wishes.
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Jay Lake
User: jaylake
Date: 2009-12-21 15:06 (UTC)
Subject: (no subject)
Thank you for all the kind words. Your book is almost up on my reading list, btw.
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Kari Sperring
User: la_marquise_de_
Date: 2009-12-21 17:37 (UTC)
Subject: (no subject)
I hope you don't hate it.
Kari xx
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Jay Lake: sanguine-birds_wake
User: jaylake
Date: 2009-12-21 17:40 (UTC)
Subject: (no subject)
Keyword:sanguine-birds_wake
Silly woman. Besides, calendula_witch really liked it. (She read it first.)
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desperance
User: desperance
Date: 2009-12-21 18:32 (UTC)
Subject: (no subject)
She is a woman of wisdom and perception. You should probably hold on to her.
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Jay Lake: calendula_plates
User: jaylake
Date: 2009-12-21 19:00 (UTC)
Subject: (no subject)
Keyword:calendula_plates
You should probably hold on to her.

That's the plan. In spades...
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calendula_witch: arms
User: calendula_witch
Date: 2009-12-21 20:22 (UTC)
Subject: (no subject)
Keyword:arms
Aw you guys. :-)
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User: joycemocha
Date: 2009-12-21 15:41 (UTC)
Subject: (no subject)
The pacing issues are something you'll need to learn as you age. It's unfortunate that you have to learn them sooner than you otherwise might need to--but yeah.

I think the oncology nurse call is an excellent idea. It's weird how some things can throw off sex or affect it in ways that a doctor might not think about, but the nurses know in deepest detail. I've found that whenever I have a pragmatic lifestyle concern about something medical, I don't ask the doctor--I ask the nurse.
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Valya Dudycz Lupescu
User: valya_dl
Date: 2009-12-21 17:48 (UTC)
Subject: (no subject)
Blessings of the Solstice to you, Jay. May the return of the sun bring strength and renewal.
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Twilight: Sheltering Oak
User: twilight2000
Date: 2009-12-21 18:28 (UTC)
Subject: (no subject)
Keyword:Sheltering Oak
Happy Solstice - take your strength from the longer days as you need it! We're all out here pulling for you!

fjm may well be right about an HIV org being more help figuring out the details - don't hesitate to call one of your oncology nurse can't manage useful answers for whatever reason.
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desperance
User: desperance
Date: 2009-12-21 18:33 (UTC)
Subject: (no subject)
How's the fluid-in-your-chest issue that was troubling you earlier, has that drained away?
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Jay Lake
User: jaylake
Date: 2009-12-21 19:01 (UTC)
Subject: (no subject)
Fluid's ok, I'm still getting a lot of fatigue-correlated somatic hallucinations from the surgery site, though...
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cathshaffer
User: cathshaffer
Date: 2009-12-21 19:56 (UTC)
Subject: (no subject)
Be careful about building up too many negative expectations. Your doctor needs to prepare you for the worst, but you should still "expect the best." Some people sail right through with very little trouble. Even as you're making plans for how to deal with severe nausea/exhaustion/whatever, keep up a positive narrative and develop some positive expectations. You might want to take up a mindless hobby for something to do while you're at infusion. Or maybe you'll be able to use it for writing time. (I wouldn't be able to, but I think you might.) You will see tons of people there with knitting. And of course books are ever-popular.
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Gary Emenitove
User: garyomaha
Date: 2009-12-21 22:32 (UTC)
Subject: (no subject)
>>You might want to take up a mindless hobby for something to do while you're at infusion<<

Sorry, I had to laugh. jaylake really needs another hobby. Well, okay, maybe a mindless one would be a new experience for him...
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e_bourne
User: e_bourne
Date: 2009-12-21 21:09 (UTC)
Subject: (no subject)
It's bizarre and annoying how difficult it is to get doctors to talk about patient sex. I say this from our personal experience. I don't know if somehow sick/injured people and their spouses suddenly drop into a different category or what. We had a near impossible time getting any information about what we could/couldn't do and what expectation should be after M's surgery. And the more we pushed, the more we got "are you guys nuts" looks. I wish you better luck than we had.
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User: xjenavivex
Date: 2009-12-21 21:42 (UTC)
Subject: (no subject)
somatic hallucinations - this is something fun I deal with at peak mania. Are you good at ignoring it or reasoning it away?
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