Jay Lake: Writer

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[links] Link salad likes to get some sleep before it travels

SlushPile Hell — Hahahahahah. Sadly irregular, so I suppose it’s an occasional skim.

30,000-year-old giant virus ‘comes back to life’ — What could possibly go wrong!?

A Powerful New Way to Edit DNA — (Via David Goldman.)

LSD, Reconsidered for TherapyIn Switzerland, the first controlled trial of the drug in more than 40 years found that it eased anxiety in people nearing the end of their lives. Personally, given what’s inside my head these days, I’d be very concerned about a bad trip. (Via David Goldman.)

Toward an Extraterrestrial Paradigm

School releases pamphlet with sex alternatives — Because nothing says “young love” like a burping contest. (Via [info]danjite.)

IMF study finds inequality is damaging to economic growthInternational Monetary Fund paper dismisses rightwing argument that redistributing incomes is self-defeating. Clearly, the IMF are a bunch of Socialist moochers who don’t know anything about money, economics or job creators. (Via [info]danjite.)

The Cliches of “Leadership” and “Resolve”

And we will prove them herewith… — My friend [info]ericjamesstone with a Mormon perspective on homosexuality and same-sex marriage. Since he’s primarily talking about his interpretation of Mormon doctrine, it doesn’t matter what my opinion is. I’m not a LDS member. But I’m glad he wrote this, regardless of my disagreements. Where I engage those disagreements is when doctrine leaves the church, any church, and enters the statehouse in an attempt to coerce non-believers according to church rules. Within their house of worship, according to our Constitution, people are free to believe anything they want. My opinions do not apply there.

The Forces Behind The ‘Religious Freedom’ Movement That Exploded Last Week — No vast right wing conspiracy here. Just lots and lots of conservatives and deep pocket donors working quietly to the same malicious ends. See the difference?

Handbook for HomophobesAdvice for those who are troubled by tolerance.

The Real Welfare QueensA new report shows corporations like Koch Industries have gotten billions in government subsidies. It’s not welfare if you give government money to rich people who don’t need it.

Right-wing columnist urges GOP to abandon outreach: ‘Colorblind conservatism’ is futile

Bill Kristol To Bill Maher: ‘Total Bullshit’ That The Tea Party Was About A Black President — Nice try, Bill. I know bigots don’t like to be called bigots, but too bad. “I totally believe that,” Maher said. “It happened a month after he took office. Suddenly white people were very upset about debt, even though Bush had raised the debt way more than Obama had.”

It’s not a messaging problemIsn’t it time for people to recognize that this isn’t a problem with the GOP “message?” It’s a problem with conservative philosophy. Also, this just in: sun rises in east.

Tea Party Might Just Fizzle In Ted Cruz’s Texas — America should be so lucky.

McConnell Vows a Senate in Working Order, if He Is Given Control“We are going to treat senators with respect — we are going to work harder and accomplish more,” said Mr. McConnell. Sure thing, Mitch. Given the behavior of the GOP majority in the house, and the Senate during prior periods of GOP majority, does anyone believe this crap besides the low information crowd watching FOX News and voting Republican? Plus, note the glaring hypocrisy on the question of the Senate filibuster, which was the worst Constitutional evil EVAR when Democrats changed it according to McConnell, but is a reasonable tactic for Republicans to keep on the table according to McConnell.

Republican Lawmaker Apologizes For Saying Men Should Be Able To Rape Women If Abortion Is Legal — Are you proud of Your Republican Party?

Wisconsin GOP Seeks To Oust Majority Leader Accused Of Sexual Harassment — From the credit where credit is due file. Good for the Wisconsin GOP.

?otD: Has it been a long, strange trip?


3/4/2014
Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 7.25 hours (solid)
Body movement: 0 minutes (airport walking to come)
Weight: 234.4
Number of FEMA troops on my block unjustly vilifying Ted Nugent: 0
Currently reading: n/a (chemo brain)

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[personal] Lacuna of wit and erudition this day

I slept poorly on Thursday night, so yesterday was very low-and-slow. Still managed some socialization when [info]mlerules came over bearing pizza and we all watched Despicable Me 2imdb ], a household favorite in these here parts.

Having a family gathering at midday today, again here at the house so I don’t have to strain myself going out. I’m capable of driving, but it exhausts me, so I do as little as possible, and only where there’s a strong value associated with that investment of my time and energy.

At any rate, I grew neither irate nor inspired about anything, so today is Banal Blog Post day. Feel free to ask questions in comments, if you wish. About anything that strikes your fancy.

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[friends] Signal boost for a significant problem with Aetna

My friend, California writer Karen Williams, has a post here about a prescription drug coverage problem she’s having with health insurance carrier Aetna. Go read it if you will, but in a nutshell, Karen has multiple sclerosis, and without a key medication, can barely walk and has difficulty functioning. Aetna has dropped the ball hard on authorizing her medication refill despite Karen’s acting well in advance of need to secure that refill, and she is running out over this holiday weekend without any action from them.

If you know anyone at Aetna, either in management or in their social media group, please ping them on Karen’s behalf. Or feel free to just pass some version of her message along through social media, until Aetna takes notice.

Organizational inefficiency may be one way to maximize shareholder value through delaying benefit payouts, but it’s taking away Karen’s ability to walk.

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[cancer|travel] An unexpected brief trip home

We received another email from my NIH doctors yesterday afternoon. Due to the extra time required for the genetic selection process, they will not be starting the first steps of my immunotherapy treatment until March 7th. Given that we’d originally expected me to be going back into the hospital about now, that’s a significant gap. So we’re going home.

As you might imagine, this led to something of a logistical fire drill yesterday afternoon and evening. We got everything sorted out, but it took a bunch of time and energy.

Had we understood this timing back when I had the surgery, we’d have gone home a week or two ago. While the extra time and expense spent being here in Maryland is more than a bit frustrating in retrospect, in the end it’s all good. Genetically personalized immunotherapy isn’t exactly a standardized process, seeing as how I am literally the first person in the world to be treated this way.

I’ll probably be coming back around March 5th, as I assume they will want to redo many of my lab tests, CT imaging, and so forth, before commencing treatment. Plus I need to have the subclavian catheter inserted. So Dad, Lisa Costello and I are flying home tomorrow. I’ll spend a couple of weeks sleeping in my own bed and hanging out with [info]the_child. I will also be At Home to family and friends in Portland (or from elsewhere if visiting or passing through), so I can renew some of my social connections.

Unexpected, all the same.

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[dreams] Walking into ignominy, and fish cookies

Long, complicated dream about my own impending death last night. In the manner of dreams, I have lost much of it already after waking, but the last bit remains.

I was preparing to leave this world, but for some reason I was dressed in motorcycle armor, and my death was a quest from which I would not return. I was wandering around trying to say good-bye to people I cared about, having just escaped some now-lost-to-memory threat earlier in the dream, when I realized that @jackwilliambell was following me with a pistol in his hand.

Confronting Jack, I told him to either go ahead and shoot me, or help me out. He decided to help me.

We were trying to get into the campus of a high school endowed by the late Dave Thomas, founder of Wendy’s. I had a bag of fish-shaped cookies I wanted to give to someone, anyone, I knew to pass on as my farewell offering to my circle of friends. But Jack and I couldn’t find our way to the front gates. Eventually we climbed some fences before trying to blend in with the student population.

I finally found @MartiMcKenna wandering around campus with some large, hunky young dude she was totally in to. I could barely get her to pay attention to me, but I finally got here to accept my fish cookies. Which her hunky dude promptly started eating.

Somewhere in there I woke up.

As usual, I don’t have much problem deconstructing my dreams. I went to boarding school when I was a kid. Dave Thomas supported adoption causes, and [info]the_child is adopted. Marti and Jack are both beloved friends of long standing associated with the writing community. I am in fact dying. Not so sure about the motorcycle armor or the fish cookies, come to think of it, other than some obvious Christian imagery around Communion, which seems remarkably egotistic, even for me in the privacy of my own dreams.

But weird and sad and amusing all at the same time. As with much of the rest of my life.

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[cancer|science] Touring the TIL Cell laboratory, finding big science in my genes

Yesterday, the scientist in charge of some of the big science behind my TIL cell therapy took us on a tour of his lab, as well as a flyby of the TIL Cell lab, where they are growing my wee little TIL cells to their full robustness (ca. 30-100 billion cells at the end of the process). (I did secure permission to mention his name and use of these photos, for noncommercial purposes such as this blog.) Dr. Eric Tran, Ph.D., Postdoctoral Fellow, Surgery Branch, Tumor Immunology Section was kind enough to spend an hour walking us around and talking through the biology of what Dr. Rosenberg’s group is hoping to do for me.

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Dr. Tran his own self.

As is the case with most bio labs I’ve seen, at first glance there’s not all that much to look at. Everything important is happening in little dishes inside of incubators. But there’s still cool science stuff sitting around, and cool science people doing cool science things. And since this science has a great deal to do with the current attempt to extend my life and wrest more time from the thieving arms of cancer, I was very glad to see what I could see and learn what I could learn.

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Typical lab sign. I took this to mean “don’t eat your lunch in here”.

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Except this one. I took this one to mean “don’t even think about ever having eaten your lunch in here”.

Dr. Tran showed us the door to the lab where my main cultures are growing right now. They are culturing both my B cells and TIL cells. The B cells are in part to provide a medium for the TIL cells, and part to do Science!!! with me as the human petri dish. The lab is off-limits for non-workers, for reasons of safety and sterility. (The cell cultures’ safety and sterility, not ours.)

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The lab where little bits of me are rapidly becoming lots more little bits of me. Hi, kids!

He then took us down to another lab where other human TIL cells are being cultivated for experimental work rather than clinical treatment.

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The official TIL cell lab, where bits of me ain’t.

There we saw TIL cells in their media packages within the incubator, as well as under an optical microscope. This was pretty cool, as we saw the difference between activated and inactivated TIL cells.

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Lisa Costello, learning something.

That distinction between inactive and active is one of the things on which this whole treatment concept hinges. Healthy human TIL cells can be found interpenetrated with many kinds of tumor tissue. They have an affinity for tumors, which allows them to locate and invade the tumor. But the cancer has an ability to inactivate them, or leave them inactivated, depending on the situation. In effect, the cancer can turn these immune cells off.

Dr. Rosenberg’s group, through the work of researchers such as Dr. Tran, have found that the TIL cells can be reactivated. Once turned on, they will then attack the cancer cells which they previously interpenetrated on a quiescent basis. This works in the mouse model. This works in the petri dish with human cells. This works in some human cancers, such as melanomas. Dr. Tran’s area of study is how this might work in digestive cancers, such as my metastatic colon cancer.

What they did after last Thursday’s surgery was mince most of the retrieved tumor tissue down to very fine pieces, a few millimeters in diameter at most. This is still much larger than the relevant cells, so most were not damaged. The tumor chunks were then placed in a medium which is very friendly to TIL cells. My TIL cells began outmigrating from the tumor chunks at a vigorous rate. Dr. Tran felt this was a good sign, which was also a comment made by my two primary doctors, Dr. Klebanoff and Dr. Klemen. My B cells derived from my recent apheresis have also been cultivating well. This makes all three of them hopeful for the next steps.

Where things get kind of different for me is that thanks to all you folks out there in the world, I brought my own Whole Genome Sequencing (WGS) data to the party. In that data, the researchers found that my colon cancer has over 100 mutations, which is somewhat higher than normal, but not freakishly so. In identifying these mutations, the researchers can add an extra step to their protocol which they’ve only ever been able to do once before, and never with WGS data. That is to say, Dr. Tran will introduce those mutations specific to my cancer genome to my own B cells, then assessing whether my TIL cells react to any of the mutations as expressed in those B cells.

In effect, Dr. Tran can select from among my TIL cells for those mostly likely to target known mutation sites in the cancer’s genome, and thus attack only the cancer cells in my body. This adds a layer of genomic medicine to the already distinctly high-tech immunotherapy which is being studied in this protocol. He can then be sure that Dr.s Klebanoff and Klemen are working with the best possible pool of TIL cells to put back into my body in the infusion phase of the protocol.

This is about as cutting edge as it gets. The one other patient they tried this was someone they were able to do an Exome Sequencing run on, which can be critically valuable. I’m the first patient ever to bring the sequencing data in the door with me. And with my WGS data, Dr. Rosenberg’s team has the keys to the kingdom.

So Dr. Tran is using Big Science and Big Data to build the most efficient TIL cell infusion possible for Drs. Klebanoff and Klemen to go after my cancer.

The downside, such as it is, is that this filtering and selection of my TIL cells may add as much as a week to my TIL cell infusion start date, and may keep me in the NIH hospital as much as a week longer than we originally anticipated.

It doesn’t get much cooler than this. New doors in immunotherapy and genomic medicine are being opened by my case, with your support, first of the Sequence a Science Fiction Writer fundraiser last year, and ongoing right now the Science Fiction Author on Trial (NIH trial, that is!) fundraiser. Even though we’ve met goal on the new fundraiser, the targeted mutation screening step has added several thousand more dollars to our costs by extending our stay in Maryland, so every dollar helps.

By reading, by promoting, by donating, by supporting, this community of my friends and fans and readers and genre folk and cancer activists and patients and caregivers have helped slap down a big old paving stone on the path to better, more effective cancer treatments. I’m out at the pointy end of the stick right now, being helped by Dr. Tran and Dr. Klebanoff and Dr. Klemen and Lisa Costello and Dad and my family and friends, but none of us would be out here on the stick without you.

Thank you so very much.

I’ll leave you with this final thought from the hallway outside the labs.

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Photos © 2008, 2014, Joseph E. Lake, Jr. All photos taken with permission.

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

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[travel|cancer] Now in Bethesda, Maryland, and the unlikely way I got here

As of half an hour ago, I arrived at the hotel where Dad and Lisa Costello are staying. Though I was supposed to check into the NIH hospital last night, I will be there around 7:00 am this morning, about 12 hours late. My original flight to DC was cancelled yesterday morning due to weather, and a rather elaborate Rube Goldberg plan emerged in its place.

I’ll let my Tweetstream tell the story…

That doesn’t even cover all the bases, like the poor passenger having the panic attack and my long conversation about Omaha.

All in all, I got about three hours of sleep last night, non-contiguously. Also, I added close to $2,000 to my expenses in additional unbudgeted costs for this whole farrago. If you feel like it, please promote or donate to the Science Fiction Author on Trial (NIH trial, that is!) fundraiser for my NIH collateral expenses.

But I am here. And shortly I will be at the hospital, bushy-eyed and bright-tailed and ready to assist in advancing the cause of healthcare research.

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[books|writing] The January Machine

Back in the 1990s, I wrote my first attempt at a novel. It was called The January Machine. I quote the opening paragraphs of the synopsis I retrofitted some years later…

The year is 2041. Global warming has arrived with a vengeance. Ocean levels are rising, temperature extremes are off the scale, and loss of the ozone layer is destroying entire ecosystems. The United States has fractured under green and Third World backlash, with multiple secessions and a major West Coast earthquake complicating recovery. Meanwhile a prosperous, fascist Poland has risen to world dominance on the ruins of the European Union.

In this setting, human-grade AIs are relatively common, although their application is heavily regulated. In response to draconian AI-control measures, a shadowy AI underground known as the “goldens” seeks civil rights. In addition, time travel, while not possible in 2041, figures into the story from the perspective of the world’s future.

Marcus Sharpton, affiliated with the goldens, stumbles on stolen Polish military data — control codes for the January Machine. The January Machine was a Soviet doomsday project, consisting of several hundred nuclear warheads lining a Mohole, or deep crustal excavation, near a Siberian tectonic plate boundary. When activated, it would create a mega-volcano several hundred times more powerful than the catastrophic eruption of Krakatoa, plunging Earth into a long-term nuclear winter, where superior Soviet arctic warfare capabilities would ensure their military dominance.

I was trying to write a science fiction thriller. I had a lot of fun with it. Frankly, The January Machine is a terrible book from a craft perspective, but there’s a lot of neat ideas and some cool tropes in there, and it’s recognizably a Jay Lake book.

Mother of the Child has been asking for a while if she can have a printed, bound copy of the manuscript so she can re-read the book. My friend SC offered to do the layout and get the project through a print-on-demand vendor. Thus, I give you The January Machine:

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As I’m trying to pull together a fund-raiser to help defray the substantial travel and lodging costs associated with my NIH clinical trial, I’m considering putting a few copies of the book in as premiums. I have some to spare, as the POD minimum order requirements were larger than my immediate needs.

It’s kind of fun to see that first effort from the mid-1990s have a print life, even one so small and odd.


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

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[travel|cancer] Flying home now

Dad, Lisa Costello and I are off to the airport momentarily. Flying home to Portland. We’ll be there about a week before we come back to Maryland for the next steps at NIH.

In the mean time, due to the need for strict health hygiene in the run up to lung surgery, I am going to have to pick up some surgical masks on the way to the airport, and wear one on the plane. I purely hate that. This is also affecting some of my social plans for next week, as I need to be careful about environments and behaviors that would increase my risk of viral or bacterial transmission.

(No hot tub for me, in other words.)

Ah, science. Ah, cancer. At least I’m going home.

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[food|friends] Last night’s open dinner

Last night, Lisa Costello and I went to our open dinner. Despite the very crummy weather, we had a nice turnout: Joe Jordan, John Sapienza, Evelyn Kriete and GD Falksen.

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A good time was had by all, amid good food and fun conversation. I’m really sorry the weather kept some other folks away. Once I understand my schedule better, I will try to offer another opportunity.

Photo © 2014, Joseph E. Lake, Jr.

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

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