February 6th, 2013


[links] Link salad trudges back to the hospital

The Acts of Whimsy cancer fundraiser is still live. It has made goal, but additional support is always welcome, especially given my new complications. Please check it out if you have not done so yet.

A final update from Waterloo Productions on their Kickstarter — Including a video segment I find very hard to watch.

Digital Doesn’t Matter: Reinventing the Advertising Industry — A friend of mine from a long time ago has an interesting Kickstarter project about advertising and media in the digital age.

Release Schedule Shift — Apocalypse Ink Productions announces my nonfiction book on the craft of writing is scheduled for an August release.

Disney developing new 'Star Wars' stand-alone movieshese movies will not be part of the new trilogy announced last fall when Disney bought Lucasfilm for $4 billion. Last month, "Star Trek" director J.J. Abrams was named director of the new "Star Wars: Episode VII," which will kick off the next three movies in the saga and is tentatively scheduled for release in 2015.

Site plagiarizes blog posts, then files DMCA takedown on originals — Wow. And way to go, WordPress hosting. Smooth move.

How enigmatic ribbon formed at edge of solar system

Evidence moles can smell in stereo — Really?

Venezuelan poodle moth — Wow. I got nothing. (Via Daily Idioms, Annotated.)

From Manly to Sexy: The History of the High Heel

York fights Leicester for right to Richard III remains — It's the War of the Rose all over again!

Huge gay marriage victory in the UK Parliament — Nice to see my cousins across the pond doing the right thing and saying "no" to senseless bigotry.

Mormons join religious right bigots in filing brief in support of Prop 8 — Wrong verb in that headline. Are religious bigots, not join religious bigots.

Pentagon to extend certain benefits to same-sex spouses — Another anti-gay bigotry domino falls.

Colorado Creationism Bill Dies in Committee — Color me mildly surprised. Reality-denying conservative loons have had plenty of traction in recent years.

The Threat of SilenceMeet the groundbreaking new encryption app set to revolutionize privacy and freak out the feds. (Via @jackwilliambell.)

Top Five Objections to the White House’s Drone Killing Memo — And then some, methinks. Hey, Obama, you're supposed to be one of the good guys, damn it. Ta-Nehisi Coates with more on this, starting from a literally Orwellian perspective.

QotD?: Got doctors? Want some?

Writing time yesterday: 0.5 hours (1,000 words on a spec novella)
Hours slept: 6.5 hours (solid)
Body movement: 0.5 hours stationary bicycle
Weight: 228.2
Number of FEMA troops on my block protecting women from violence: 0
Currently reading: Gulp by Mary Roach


[cancer] Field notes from Cancerland, followup exam edition

Back to the oncology department

I am going back to the doctor today, to see my surgical oncologist for a post-operative examination. This will likely be an unalarming visit, as all the major shoes have dropped insofar as I know. On the other hand, I've thought that before, and then things have gotten worse. And worse. I plan to discuss the state of my tumors at excision, and some technical details around the genomic testing. From a purely somatic perspective, I am healing well. The incision is nicely closed up, my mobility is good, I've had no issues with adverse reactions. Largely thanks to the anesthesia regimen we adopted, this has been my swiftest and simplest surgical recovery to date.


At this point, it is probably true that I will spend the rest of my life in treatment. That thought depresses me immeasurably. I'm going back on Vectibix early next month, and will remain on that drug indefinitely, until the next metastases appear. After that, I'll cycle through alternating surgery and chemotherapy regimens until we can't operate any more or we run out of drugs. Then I'll be on palliative care, with its own treatment protocols. Not ever leaving treatment again has a lot of implications, from sexual health (all of my bodily emissions are toxic when I'm in chemotherapy, not to mention pernicious erectile dysfunction) to cognitive functions. The bright side, such as it is, is that the forthcoming Vectibix regimen will be without the FOLFOX backbone, which means my writing brain should stay alive.

Public Appearances

Gaslight Gathering, a steampunk con in San Diego, CA (May 3rd through 5th of this year) has invited me to be their Guest of Honor. I am filling in for the far more worthy Cherie Priest, who had to step down for personal reasons. The con com was very patient in negotiating with me about my health status, and waiting for my oncology visit of this past Monday before I could confirm anything. Given that I have a CT scan in March, it's slightly possible I'll throw a met before May, but I think we're more likely to find something on the May or July scans, so I felt like I could commit in good conscience. I'll be taking [info]the_child with me to San Diego.

Still working on a possible con appearance over Memorial Day weekend, and I've bought a WorldCon membership in a fit of possibly unwarranted optimism. There's going to be some neat cancer-related stuff going on at WorldCon, including the premiere of Lakesideimdb ] from Waterloo Productions. Plus I've been asked to present the Campbell Tiara again at this year's Hugo ceremony. So I'd really like to be there. I just have to get through three rounds of scans clean. Sigh.


The paperwork continues agonizingly dense and complex. This doesn't even count extraneous issues of errors in the process. Without my Dad (a retired senior diplomat and US ambassador, and thus very familiar with navigating complex administrative processes) chasing 95% of it on my behalf, I don't know what I'd do. I'm amazed anyone survives being ill in our system without going broke or just dying of the workload. And this is me talking from the perspective of someone with a lot of white and professional privilege, good benefits, and decent resources. Not to mention some fantastic fundraising friends. As I've said before, if I were the guy down the street, what would I have done up until now?


I am writing again. Put down 1,000 words yesterday on a spec novella. I've also responded to a very interesting proposal for some nonfiction work. And I'm beginning to explore how to write my book about my own process of death and dying. The working title is Jay Lake's Book of the Dead, though I'm sure it will be something else eventually. I have two different friends helping me on that, one editing my existing cancer blog posts, the other cueing up to finish the book whenever I become too ill (or too dead) to continue writing it myself. And I'm eyeballing Original Destiny, Manifest Sin. So, yeah. Not giving up on that.


[cancer] Best healthcare system in the world, my tumor-riddled ass

One of the drumbeats from our friends on the Right here in the United States is that Obamacare is some kind of socialist plot to undermine the best healthcare system in the world.

Only someone who has never been enmeshed in American healthcare could say that. Our treatments and outcomes are generally pretty good — though not always, viz our infant mortality rates, for example — but the healthcare billing and payments structure is a bleeding nightmare.

I discovered last week that my medical oncologist, whom I have been seeing since 2009, is suddenly being classed as out-of-network by my health insurance carrier. This means instead of my $40 specialist co-pay, I am responsible for $283.59 for seeing an out-of-network provider with each of my biweekly visits.

This has still not been cleared up, but to date I have made or received ten phone calls to either my insurance carrier or my treating hospital, and with transfers, spoken to or left voicemails for seventeen different people. I have discovered that my hospital has multiple departments known as "managed care", and multiple departments known as "billing", and that even the people who work in those departments cannot tell me the difference, or necessarily know what to do if my call has been accidentally transferred to the wrong department.

Meanwhile, my doctor clearly shows as in-network on my insurance carrier's own "Find a Physician" web site. Yet when I call the claims group, they tell me my doctor is out-of-network.

Because reasons.

It turns out the problem is actually that on 1/1/2013, the address of record for my doctor changed from one of my hospital's multiple street addresses to a different street address. This caused the tax ID under which they bill to be different. Apparently, my hospital's billing department (or one of them, at least), has not yet caught up to this little factoid.

Meanwhile I, the stressed out and distracted late stage cancer patient, am responsible for talking to at least seventeen different people to get this straightened out. The hospital isn't doing it because they get paid either way. The insurance carrier isn't doing it because by billing out-of-network they save money. It all rests on me. Another part of the fundamental cruel illogic of our social system.

I have spent more time on this problem than I spent talking to my oncologist about the fact that my cancer is now considered incurable. Think about what that says about our systemic priorities.

To put it all in simple terms, in a single-payer system, none of this would be a problem.

So you think this is the best healthcare system in the world? Walk a mile in my shoes, then say that. On the pointy end, where medicine is practiced, I have very few complaints. But the ridiculous for-profit payment processes can be a freaking nightmare.