January 11th, 2013


[links] Link salad looks back on yesterday in agape wonder

The Lakeside Kickstarter has made its goal — Waterloo Productions has some stretch goals as well, so if you're interested in the documentary film about me, [info]the_child, and cancer, click through to see the trailer and check out the fundraiser.

The Sequence a Science Fiction Writer has made its goal, funding a needed genetic test for me — Actually, it's blown the doors off its goal, did so in the first five hours. You guys are amazing. Organizers Catherine Shaffer and Mary Robinette Kowal have provided some unique giving level bonuses, including stretch goals as the fundraiser remains open.

The video of me reading beloved classics like phone sex for the Jay Lake fundraiser — Speaking of giving level bonuses for the genetic testing fundraiser, here's the first one to be made public. Screamingly funny, but put your coffee down somewhere away from the keyboard before you watch this short video. Work- and child-safe, mostly.

Featured Author Review: Endurance by Jay LakeLitStack on my novel Endurance. Very positive, and from my perspective, spot on.

The Hobbits: Misty Mountain a capella cover by Peter Hollens — Wow. (Via [info]threeoutside.)

The Beauty of Decayed Daguerreotypes — Wow. And yes, I am one of those people fascinated by decay. (Via Lisa Costello.)

Clock made from a single atom could lead to a precise mass measurementCompton frequency of the atom is made accessible to experimental measurement. Nanoclockpunk?

Let's Put An Asteroid In Orbit Around the Moon — Because SCIENCE! Who needs reasons?

Newfound planet is best candidate yet for life

Heat, Flood or Icy Cold, Extreme Weather Rages Worldwide — Nope, no climate change here. Just liberal propaganda and 99% of climate scientists in a secret conspiracy supported by nothing but "facts" and "data" and so-called "trends".

Love is not a victory march — unless you’re Marvin OlaskySlacktivist Fred Clark on a Right wing rewrite of Leonard Cohen's "Hallelujah". For reals. Out. Of. Their. Minds.

Gun-toting soccer mom found shot deadCops: Pa. woman’s 3 children were home during suspected murder-suicide. I can't possibly snark on this story because it's so tragic. The moral here should be obvious, but sadly won't be.

Agnotologic capitalism — Yeah, that term would pretty much describe America's conservative base with their epistemic closure and their faith in the sideshow fraud that is supply side economics. (Snurched from Daily Idioms, Annotated.)

?otD: How thankful can Jay be?

Writing time yesterday: 0.0 hours (stress)
Hours slept: 6.5 hours (solid)
Body movement: 0.5 hours (stationary bike)
Weight: 216.2
Number of FEMA troops on my block teaching critical thinking skills to the children of conservatives: 0
Currently reading: The Hydrogen Sonata by Iain M. Banks


[cancer] Sex on chemo

I've been holding on to a blog post concerning sex on chemo for quite some time. Not because I'm unwilling to discuss this, but because it's quite explicit. That's a bit outside the editorial bounds of this blog, not to mention which, I don't want to be blacklisted as an inappropriate site by the various net nanny type filtering mechanisms.

Finally I realized that I could make that blog post into a short essay on a Web page, block search engines from it, and link directly. So, with the warning of explicit, NSFW content, I have posted Sex on chemo: A user’s guide to cancer and your love life.

Basically the problem comes down to this: oncology professionals don't want to talk about sex. In some cases that may be individual squeamishness or boundary issues — though I personally think any doctor with those kind of boundary issues might want to rethink their chosen profession — but it's more often a liability issue. As I say in the essay, oncologists are deeply paranoid about the possibility of chemo pregnancy. (Think Thalidomide.) As a result, they generally counsel absolute abstemption from sex, without acknowledging outercourse or any other aspects of nonprocreative sex such as older age, infertility or nonheteronormative lifestyles. For liability purposes, any endorsement of sexual behavior of any kind opens the door to a pregnancy-related lawsuit against the doctor and their institution.

Basically, once you are a cancer patient, your sexuality is assumed to be in remission. Other cancer patients have reported to me experiencing resistance or even revulsion from oncology professionals about the subject of sexuality. Which is a crying shame, and deeply inappropriate.

One of the key problems is that oncology professionals can't tell you about the breakdown curves and toxicity risks of the chemo drugs and their byproducts, especially with respect to transmission through saliva or ejaculate. That's not a subject that gets studied for obvious liability reasons. And on chemo, any bodily emissions are considered cytotoxic, systemically toxic, and possibly caustic, due to both the primary pharmaceutical load and the drug breakdown by-products. In other words, 100% risk, 100% of the time. Sex = bad. No cookie for you, chemo lad!

Which is obviously ridiculous. But in absence of clinical guidance, neither I nor any other responsible chemotherapy patient is going to risk their partner's health. And there simply is no clinical guidance.

This abrogation of patient sexuality is a major failing of oncology as a specialty. The sometimes shaming of patients seeking counsel on the subject is a major failing of oncology professionals as compassionate, understanding human beings. The reality is we are all sexual beings, however we choose to express ourselves. Evolution put us on this earth to do two things: fuck off, and die. We fuck off to make more of ourselves, and we die to get out of their way.

A chemo patient generally has a pretty good handle on the dying part. Denying the rest of the process is unfair and dehumanizing. My little essay is a small brick being thrown at that wall of denial.


[cancer|personal] The fundraisers

I hardly know where to begin. Perhaps at the beginning?

In the past three days, almost $50,000 has been raised in my name in two separate fundraisers. Both have made goal, both are still ongoing with stretch goals and level bonuses.

The first is The Lakeside Kickstarter to support continued filming of the ongoing documentary project. Waterloo Productions has been very generous with its time and resources, but the twists in my healthcare journey have thrown kinks into their budget. I really want to thank everyone who contributed to keeping that project afloat, because I think this is an important atory to tell.

The second is the Sequence a Science Fiction Writer Acts of Whimsy fundraiser, which made its initial goal in five hours and as I write this is closing in on its second stretch goal. There's some pretty hilarious level bonuses in this campaign. Th Acts of Whimsy fundraiser is intended to pay for genome sequencing of my tumors, an expensive procedure not yet part of the standard of care nor covered by health insurance. We're running out of treatments for me, and such a test may provide new insights into treatment direction. (This is explained in detail at the fund raising site.) Again, I cannot possibly thank everyone who participated and continues to participate.

That such a process in the middle of this very hard week could take place has amazed me. Boggled me. I had no idea there was this much support out there. So many people have given, almost 800 as I write this, some of them so obviously at a stretch it makes my heart ache. People I know for a fact are out of work and looking for jobs, people I know for a fact are living on limited budgets, as well as friends, fans and strangers from all walks of life and economic circumstances, each as generous as they can be, some generous beyond reason.

Likewise the Internet support, from blogs and Web sites and tweets, all the way from individual writing blogs to Boing Boing, Whatever and supportive tweets from the Bloggess. That signal boost has been amazing.

You people are amazing. But I think I said it best in this video from yesterday.

Thank you. I love you all.