January 29th, 2013

a-links

[links] Link salad buries its soul in a scrapbook

The Acts of Whimsy cancer fundraiser and the Lakeside Kickstarter for the documentary about me, [info]the_child, and cancer are still live. Both have made goal, but additional support is always welcome. Please check them out if you have not done so yet.

Calvin and Hobbes on language — Hahahah.

In the Dairy Case, Ripe Prose — On the language of cheesemongery. Hah! (Thanks to AH, via [info]tillyjane, a/k/a my Mom.)

Women fight to get benefits for breast cancer survivors rushed — Because when you're very ill is when America shows its cruelty best.

Is It Time to Treat Violence Like a Contagious Disease? — (Via David Goldman.)

Microorganisms Discovered in Middle and Upper Troposphere — I hate it when that happens.

Data Storage: The DNA Option — Brings a whole new meaning to the term "thumb drive".

Physicists seek cosmic domain walls — Because science! (Via Daily Idioms, Annotated.)

Simulated Pickett N4-ES Slide Rule — Because math!

Apollo 16: Driving on the MoonAPOD with some cool video.

North Korea Is No Longer A Big White Space On Google Maps — You can even find your friendly neighborhood gulag now.

A climate seesaw in the AtlanticResearchers are trying to understand the impact of the Atlantic's big cycles. This is how science works. Instead of the comforting ideological certainty and willful ignorance of denialism, climate science constantly tests itself.

In a Quick Shift, Scouts Rethink a Ban on Gays — Another domino in the wall of conservative bigotry falls? They're going about it in a half-assed way, but at least this is progress.

Boy Scouts reconsidering stance on gay members — Really, who wrote that headline?

Do white evangelicals have a delusional persecution complex? Barna says yes, and provides quantifiable proof A majority of white evangelicals “want Judeo-Christians to dominate the culture,” said David Kinnamon, president of the Barna Group. “Dominate.” Or, as Christian said, it’s not about religious liberty, it’s about religious primacy. The idea that Christians are persecuted in our society is a wonderfully self-valorizing concept that has no correspondence in reality, unless you define "persecution" as "marginal erosion of the privilege inherent in absolute cultural dominance."

QotD?: Are there photographs there? Is there moss?




1/29/2013
Writing time yesterday: 0.0 hours (still in post-operative recovery)
Hours slept: 7.0 hours (solid)
Body movement: 0.0 hours (post-operative recovery)
Weight: n/a (forgot)
Number of FEMA troops on my block protecting women from violence: 0
Currently reading: The Light Fantastic by Terry Pratchett

writing-bookshelf

[books] The Hydrogen Sonata

I finally finished reading Iain M. Banks' newest Culture novel, The Hydrogen SonataPowells | BN ]. (The long delays in my reading were related to my health issues, not the quality if the book.) In three words, I loved it.

This is a typical Culture novel, if that phrase even makes any sense — a 500-page brick of a hardback release dense with the meaty, unapologetic heavy iron space opera that Banks does so very well. This stuff tickles my brain hard and makes me very happy to read, lengthy infodumps and long asides and all.

Like many of Banks' books, the central plot is interwoven with dozens of side plots, tangential events, and sometimes things that seem sheerly and gloriously random. This is not tight prose, and it is not casual reading. What it is, is smart as hell and a great deal of fun. Even if you've never read a Culture book before, it will make sense. It will make more sense if you have, of course.

After I finished The Hydrogen Sonata last night, I spent some time thinking about what the book did and what it meant. One of the basic critical questions about any story is "whose story is this"? Ie, "who changes or is changed most by events". In an odd way, The Hydrogen Sonata fails this test. Or more to the point, declines to be measured by this test in the first place. I mean, we have 500 pages of culture clash, space battles, the disappearance of an entire species, the machinations of the galaxy's oldest person, love, sex, betrayal, and of course, the Hydrogen Sonata itself. Yet at the end, with one or two exceptions, every major character more or less winds up where you might have expected them to from the beginning. (Except for those who got killed along the way.) Even Vyr Cossont, the nominal protagonist, seems to have the gentlest of epiphanies, albeit her journey to that point is very challenging.

And I think this is the point of The Hydrogen Sonata, inasmuch as it has one: the journey is the tale, not the destination. It's a heck of a journey, and I loved it. Delightfully dense, thoughtful, intellectually challenging stuff that's also a heck of a ride.

cancer-scars

[cancer] Field notes from Cancerland, recuperative edition

Physical Recovery

Damn, this shit hurts. At least I can cough or sneeze now without almost blacking out from the pain. Sleeping okay as well, which is good. If I weren't so averse to opiates, I'd be cruising along in an Oxycodone haze still, but that ain't happening. My appetite is good, and I have decent mobility. Mostly I feel like I got kicked by a horse with knife-sharp hooves.

Next Steps

Dad spent a lot of time on the phone yesterday with various parties, most notably my health insurance carrier. With these new developments, I will yet again be seeking a second opinion at a major national cancer center. This is ironic, considering I do not even have a first opinion yet. I expect to travel sometime in the next few weeks. Both Dad and Lisa Costello will be going with me. (Details TBA when they're confirmed, and possibly an Open Dinner.)

Likewise, I've been on the phone and email a lot, chasing details around life insurance and disability coverage. Other friends have been pitching in to backatop us with technical information and advice, notably my health science advisors [info]mikigarrison and Catherine Shaffer.

Basically, we're pursuing several tracks right now, all in parallel:
  • Proceeding with treatment at my 'home' hospital. I have appointments with both my medical and surgical oncologists next week.

  • Arranging a second opinion consultation at a leading center for advanced colorectal cancer,

  • Arranging interpretive services for the forthcoming tumor genome sequencing data.

  • Investigating an experimental immunotherapy program which happens to be taking place here in Portland.

  • Investigating clinical trials nationwide (and worldwide) which may be relevant to my particular disease progression and staging.


Emotional Impact

This is much trickier. I'm still struggling a lot to process the news about the additional tumors in my lesser omentum and thoracic diaphragm. In part, my unease is due to incomplete information: we don't have the pathology reports back on the tumors, and there are several possibilities here which will affect treatment decisions and my survival time. For example, if the omental tumors were necrotic (a possibility based on visual observation), that says one thing about my disease course and the efficacy of chemotherapy. If they're relatively robust, that says something else entirely. As anyone who's followed me for a while knows perfectly well, it's this kind of uncertainty that drives me nuts.

I'm also trying to cope with a lot of dread and fear. By any possible interpretation, the surgical outcomes are bad news. What we're wrestling with is the question of "how bad is bad"? These new presentations degrade my prognosis and almost surely further shorten my already heavily compromised life expectancy. Mind you, we still haven't given up on working for a full cure, but the odds of achieving that have grown very small indeed. Some of the acceptance I thought I'd found of my mortality and disease processes has been disrupted.

Family Impact

[info]the_child is weathering my surgical recovery well. My illness is a real emotional challenge for her, even though she is pretty sanguine about my long term prospects. She is holding up, and is an active participant in my post-operative care and recovery.

Someone asked me in email about Mother of the Child. MotC has no Internet footprint to speak of, and is very private, but obviously all this affect her deeply. We interact daily over [info]the_child's activities and life needs. My illness is very much a part of that.

Lisa Costello has been blogging about this herself. She's not nearly as verbose as I am, but she speaks her mind.

My parents, my sister, my close friends; they are all involved in different ways. It's tough at best, and seems to be only getting tougher.

What Does It Mean

What does it mean? That changes every day. Speaking in a large sense, I'm afraid my life has grown quite short, and I will spend most or all of what little remains to me being quite ill. That's not a foregone conclusions, not yet, but it is by far the likeliest outcome at this point.

I'm not giving up, that's not my way, but I feel profoundly daunted.

On the other hand, I live, love and laugh every day. That counts for a lot.