2009 December | jlake.com

[links] Link salad observes antepenNoel

The Pinion cover is made public — It’s lovely. I am terribly pleased.

commits glory — Go read. It’s only a few sentences long.

Why handwriting is history — The handwritten scoring on the SATs would have sunk me as a kid. I routinely placed in 99.9th percentile, but my handwriting is so atrocious…

Santa awing — A funny classic photo from x-planes.

The capitol subway, 1915 — Speaking of funny, classic photos. This one from Shorpy.

A solstice sunrise — APOD with one of those images that just suckers me in. The solstice sun, rising behind the Temple of Poseidon.

Titan’s Lakes, An Exoplanet’s Seas — More from Centauri Dreams. Money shot: If mapping the continents on planets around other stars doesn’t rouse your interest, you may not be paying attention

The Oral Tradition — Phil Nugent with a fascinating take on Oral Roberts, televangelism and the American Right. (Snurched from The Edge of the American West.)

?otD: Is it beginning to look a lot like Festivus?

12/23/2009
Body movement: 30 minutes on stationary bike
Hours slept: 7.0
This morning’s weigh-in: 226.2
Currently reading: Finch by Jeff VanderMeer

Tags: Art, Books, Cool, Culture, Links, Personal, Photos, Pinion, Politics, Religion, Science, Writing

Posted: 4:23 am Wed December 23 2009 | Comments(3) |

[cancer] Learning to live with limitations, and why I talk about it so much

Much of this cancer game is about learning to live with limitations. I realize that for some people that is a lifelong process, but this is a new issue for me. I retain ambitions that it might not be permanent. As says in her post on living with pain and adversity, Jay has hope that he’ll get through chemo and life will return to some semblance of normal, even though there will be huge changes for him. Nonetheless, here I am today, and here I will be through at least July.

My immediate issues right now are surgical recovery. By and large, they improve almost day to day, though sometimes I do play the two steps forward, one step back game. Our trip to Seattle last weekend set me back a bit, frankly. But this whole issue of resource management, “spoon theory“, will apply just as strongly during chemo, which I am starting in two and half weeks. So for the sake of my own sanity I am viewing the surgical recovery process as contiguous with the chemo experience. You might call it Session Zero.

One of the hardest elements of this for me to manage is my sleep needs. In the days after the partial thoracectomy, I was sleeping as much as twelve hours per day. Much of that was drug-induced, but that’s also what the body does with trauma — it shuts down so that resources can be spent on healing. These days I’m down to about seven and half or eight hours per night, plus one to two naps per day, plus a fair amount of laying about quietly in the name of spoon management.

And it’s driving me nuts.

I’m used to sleeping six hours a night, waking completely rested and energetic, and charging into my day. Let me tell you, I can get a lot done in eighteen productive waking hours per day. Day jobbery. Writing. Parenting. Household chores. Pleasure reading. I’m down to about fourteen or fifteen waking hours right now, and losing about two or three of those to spoon management. It’s like losing a freaking hand or something, in terms of impairing my productivity.

And this is what I have to learn to live with. For slightly different reasons, chemotherapy will have much the same effect on me. I don’t know the severity, or the cycle yet, but it will quite likely be something like this. I am learning to live with the limitations. A lot things just don’t happen the same way around here any more. Housecleaning, laundry, garbage removal. I still haven’t rehung the smoke alarm from last week’s garlic bread incident. (It’s live, just sitting on the kitchen counter instead of hanging over the doorway.) The Genre car needs to go back to the mechanic, has for weeks, simply hasn’t happened.

What I have guarded jealously is my writing time — an hour a day — and my exercise time — 30 minutes to an hour a day. I must keep my purpose going. That is who I am.

As to why I write about this stuff in such detail, even the difficult and weird stuff, like depression and sex; I suppose there’s three reasons.

One, I am an external processor. I babble my way through my troubles anyway. In most of my life, that amounts to a lunchtime chat with or time with . Most issues don’t need a continuous, public airing. The journey of cancer, and its seemingly endless ramifications, has utterly taken over my life. So my need for external processing has amped up. I am a writer, so I write. I would write about it even if you weren’t reading. This could be called the “selfish attention whore” modality.

Two, documentation. This is a hell of a journey. Millions of people make it every year. And almost no one talks about it. So again, I am a writer, I write. For some of you, this is research and reference for your own work. For others, it’s a reflection of life experience in your own circle of friends and family. For others, it might simply be a look into a difficult place. But by documenting this, I expose mysteries and secrets and horrors and shames. That eases my burden, and it (hopefully) increases understanding. Consider this the “peer learning” modality.

Third, because too many people are wrapped in silence, and my words help them. I didn’t know this when I started cancer blogging, and I rarely mention it as I go along, but I get emails, comments, letters; some weeks almost daily. People write and say, “Now I know what my father was going through, though he would never talk about it.” Or, “I have two years to live, and you’ve helped me explain things to my family.” Or, “We went through this with our son, and it really helps me to hear how you’ve handled it.” I get emails that break my heart. I get emails that lift my heart. But it’s become almost the most important reason for me to keep being so clear, so honest, so out there on this. Because cancer and its discontents are largely silent diseases, at least in terms of the individual experience, and I can loan my voice a while to those who have not yet found their own words. Consider this the “speaking to cancer” modality.

If you’re still reading, what does all this say to you? How do you read my cancer journey? I admit to unseemly curiosity.

Tags: Calendula, Cancer, health

Posted: 5:57 am Tue December 22 2009 | Comments(6) |

[photos] Your Tuesday moment of zen

Your Tuesday moment of zen.

This work by Joseph E. Lake, Jr. is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.

Tags: flowers, Photos, Portland, zen

Posted: 5:34 am Tue December 22 2009 | Comments(0) |

[links] Link salad watches the light come back

reviews Pinion — Which is the first review I’ve seen of the book. If you’ve recently tuned in, Pinion is the third Mainspring book, and will be out in April.

with a (largely negative) review of Mainspring [ Powell's | Amazon thb | Barnes & Noble | Borders | Audible ] — Another micro review here.

Ta-Nehisi Coates discusses artistic intent and experience — This closely parallels my long-stated view that the story belongs to the reader. Interesting example in this post, about an Australian poem being significantl reinterpreted by American readers.

10 Christmases — Lucius Shephard, with a blog post that ought to be turned into a film. Brilliant. Hard. Sharp. Glorious. Go read.

Letters of Note — One could easily lose a few hours wandering around this site.

The Solar System in Maine — Strange Maps talks about a scale model of the solar system along Route 1.

Detecting habitable exomoons — Endor, anyone? Or Pandora? From Centauri Dreams.

The Geoengineering Gambit — Technology Review on response to climate change. Money shot: “Such effects of climate change no longer surprise scientists. But the speed at which they’re happening does.” Ah, that liberal conspiracy is so pervasive, it’s actually melting Himalyan glaciers just to embarass conservatives. As a side note, I was fascinated to hear the BBC mention recently that Chinese conservatives consider the whole climate change issue an American plot to retard China’s industrial growth. Yet another thing American conservatives have in common with hardline Communists. Confidential to conservative America: When your positions most closely resemble Islamic and Communist radicals, it might be time to rethink your positioning.

?otD: Will you read Pinion?

12/22/2009
Body movement: 30 minutes on stationary bike
Hours slept: 7.5
This morning’s weigh-in: 225.8
Currently reading: Finch by Jeff VanderMeer

Tags: Cool, Culture, Funny, Links, Mainspring, Personal, Pinion, Politics, Process, reviews, Science, Writing

Posted: 5:30 am Tue December 22 2009 | Comments(0) |

[podcasting] Recorded some audio

just departed Nuevo Rancho Lake. He’d dropped by to record a podcast with me for Tor.com, and we shared pizza and salad with . Neither of us was in top form, but the podcasts came out well, and it was good to connect. Me, bushed, sleeping Real Soon Now.

Tags: audio, Child, Personal, podcasts

Posted: 7:14 pm Mon December 21 2009 | Comments(0) |

[cancer] More about sex

The oncology nurse called me back this afternoon. I asked her first about the changing sensations in my port implant. She believes that the tissue swelling has gone down enough for me to be aware of the device, and that the awareness will diminish as I become more accustomed to it. At the moment it feels as if someone left a Bic pen inside my right chest.

I also asked her my sex questions, since I’d gotten mixed or unclear answers before. Specifically:

How long do I need to use condoms after each infusion? Or should I use them continuously throughout the entire chemo cycle, and if so, for how long afterward? This is specifically to prevent transmission to my sex partners of my drugs or their decay products in my ejaculate.
Given that bacterial safety is a huge issue with the immunocompromisation side effects of chemo, is it safe for me to perform oral sex on a partner? She likewise raised the issue of me receiving oral sex, as bacterial transmission can also occur via that path.

The nurse was bemused but forthright. She apparently had not been asked these questions before. Most patients with my cancer profile are 20+ years older than me, and that generation apparently doesn’t ask, doesn’t tell. I told her I was a writer and had no shame.

We also discussed the possibility that chemo would depress my libido sufficiently that the issues might be moot. My libido, however, is infamously substantial and elastic, so I’d sure like to know the answers.

Unfortunately, no answers were forthcoming. She’s going to discuss drug half-lives with the oncological pharmacist, who apparently has charts and everything covering exactly these issues, and come back with guidance on fluid exchange. She’s going to talk to the staff doctors about the bacterial issues of the various forms of sexual intercourse. So, I look forward to an interesting call in a day or two.

Ah, the things we need to deal with. This was so much more interesting than my talk with my dentist.

Tags: Cancer, health, Personal, sex

Posted: 3:21 pm Mon December 21 2009 | Comments(10) |

[personal|cancer] More reflections, plus 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 , and . We attended ‘s party, then later 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 said to me at ‘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 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 leaves for San Francisco shortly, which dims my world a bit.

Happy Solstice, all, and stay healthier than me.

Tags: Calendula, Cancer, health, Personal, Seattle, sex

Posted: 5:13 am Mon December 21 2009 | Comments(0) |

[photos] Your Monday moment of zen

Your Monday moment of zen.

This work by S. Bryant is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.

Tags: Calendula, family, Personal, Photos, zen

Posted: 4:54 am Mon December 21 2009 | Comments(0) |

[links] Link salad celebrates the turning of the sun

A reader reacts to Mainspring [ Powell's | Amazon thb | Barnes & Noble | Borders | Audible ] — Mixed but positive.

talks about our weekend

Sarah Bernhardt’s leg ~~Art~~ culture guru James Gurney with a very strange tale, indeed.

A Softer World appears to have broken into my head — As put it.

The year in materials — Mmm, science.

Auschwitz sign recovered — This whole story was bizarre.

Mumps outbreak in Brooklyn — Antivaxers on the march. Evolution denial is merely pernicious, sabotaging education, science and society, and undermining the future competitiveness of our culture. Wrong-headed and misguided. Vaccination denial kills children. Evil.

?otD: Have you rung your solstice bells?

12/21/2009
Body movement: n/a (taking to airport)
Hours slept: 7.0
This morning’s weigh-in: 225.8
Currently reading: Finch by Jeff VanderMeer

Tags: Calendula, Cancer, Cool, Culture, healthcare, Links, Mainspring, Personal, reviews, Science, weird