Jay Lake: Writer

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[links] Link salad still wishes it slept better

Graphing Depression and Anxiety — Jim C. Hines is wise about writing productivity in the face of such widespread challenges.

Candlemen — A character type based on Mainspring. Very cool.

The Paintings of Jason de Graaf — Wow, the light work. I hope this guy is doing SF and fantasy covers. (Via [info]willyumtx.)

Presenting the Mid-Century Modern… toothbrush — Because advertising circa 1949.

Fascinating Old Maps of Both Real and Ridiculous NYC Transit Projects — Cool beans. Some alt.hist here. (Via David Goldman.)

22-Pound Housecat Who Trapped Owners After Attacking Baby To Get Therapy — I don’t think it’s the cat that needs therapy. Ah, Portland. (Via Lisa Costello.)

New Jersey Bans Tesla to Ensure Buying a Car Will Always Suck — Ah, the New Jersery Auto Dealer Preservation Act, to better serve your needs without competitive pressure from new business models.

T. rex Had a Small, Cute Cousin — Uh…

First thin films of spin ice reveal cold secrets

U of A solves deep-Earth water mysteryTesting on the tiny mineral sample proves there is water about 400 to 700 kilometres below the Earth’s surface.

The Unfrozen North — Nothing to see here, citizen. Move along.

Recent estimates of low climate sensitivity were flawedBetter accounting for aerosols shows CO2 just as potent as we thought. This is how climate science works. New and contradictory data is absorbed and accounted for, and theories are adjusted. It’s science, after all.

Principled bigotry is still, you know, bigotry — Confidential to religious conservatives in America: Listen up. (Via Slacktivist Fred Clark.)

Mississippi, Louisiana, Georgia top list of gay-porn watching states — Because good conservative Red State morality trumps Blue State liberal degeneracy, that’s why.

Couple from Black Earth church convicted of child abuse — Ah, the magic of sincerely held religious beliefs. Which really are not a get-out-of-jail-free card for criminal conduct or outright immorality, the fevered dreams of religious conservatives in their persecution of gays and women notwithstanding. (Via Slacktivist Fred Clark.)

Why We Hate Corporations

The Triumph Of Arrant Bullshit On The Affordable Care Act{T]his quote is immeasurably tragic. It represents a kind of final victory for mean-spirited and uncharitable propaganda over reality, a triumph for misinformation, sabotage, and arrant bullshit in the service of a cruel ideology and faceless oligarchy.

?otD: Yawn much more?


3/13/2014
Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 6.0 hours (badly interrupted, some daytime napping)
Body movement: 0 minutes (hall walking to come)
Weight: n/a
Number of FEMA troops on my block teaching wives how to be submissive: 0
Currently reading: n/a (chemo brain)

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[links] Link salad feels a bit better during the lull between assault waves

Bargain Book ClubA reading list for the almost-illiterate Heh.

Aggravated cat is subdued by Portland police after terrorizing family — Life imitates Portlandia.

A History and Account of Daylight Savings

95% of bank ATMs face end of security supportAn estimated 95% of American bank ATMs run on Windows XP, and Microsoft is killing off tech support for that operating system on April 8.

Is the Wolf a Real American Hero?

How elephants react to human voices

Fickle Sun Changed Europe’s Climate for 1,000 Years

Americans have no idea how much water they’re usingThey also think everyone else should be efficient while they simply conserve.

The Relationship Between Hearing and Memory

Bieber Deposed — Can we trade him back to Canada? Maybe for Rob Ford?

Think a hangover will teach you not to drink? Guess againIt only delays the next drink if you’re short on cash.

Microbes and Metabolites Fuel an Ambitious Aging ProjectCraig Venter’s new company wants to improve human longevity by creating the world’s largest, most comprehensive database of genetic and physiological information.

The Fat DrugHow humankind unwittingly joined an experiment on antibiotics and weight gain. (Via David Goldman.)

U.S. Uninsured Rate Continues to FallUninsured rate drops most among lower-income and black Americans. And amazingly, America has yet to collapse into smoking Socialist ruins.

Teens taunted by bullies are more likely to consider, attempt suicide — This just in: water is wet. I know the point of stories like this is that quantifiable study results can prompt official action, but as long-time victim of childhood bullying who had a lot of suicidal ideation and one semi-serious attempt, I have ask why anyone in authority over children needs to wait for academic approval?

Oh Lordy – on the forthcoming Christian film PersecutionBasically, this is a movie in which it’s overtly asserted that in order for Christians to be “free” the government cannot endorse the idea of fairness to all religions. Indeed, it seems that liberty has now been interpreted as a requirement to officially acknowledge that America is a Christian Nation and must adhere to Christian precepts.

When an Undue Burden? — What if gun laws were written like abortion laws? Would those Constitution-loving conservatives embrace the intent of the Founders the same way? (Via Scrivener’s Error.)

Journalists should stop ‘balancing’ stories with Science Denialists: Cosmos’s Neil DeGrasse Tyson — Either that or go all the way. Every time a story runs about a weather satellite, a Flat Earth denialist should get equal time. It would be precisely as intellectually credible as evolution denial and climate denial, as the Bible clearly states that the Earth has four corners, and would help those elements in our culture hell bent on destroying any public understanding of science to further their political ends.

Why men shouldn’t be allowed to vote — Heh.

61% of young Republicans favor same-sex marriage — The Gay Menace strikes again, weakening the minds of young voters.

The Uses and Abuses of ReaganOne of Bush’s flaws is that he governed as more of a hard-line ideologue than Reagan ever pretended to be, and another is that he claimed to be an internationalist while making a mockery of America’s reputation in the world. Republicans should not be deluded into thinking that they are obliged to follow Bush’s example in order to honor Reagan, but neither should they feel compelled to respond to contemporary events as if nothing had changed in the last thirty years. Confidential to GOP in America: Want another Reagan? Elect another senile old fraud who projects a strong Daddy image. It worked for you last time.

?otD: How’s the cough?


3/11/2014
Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 8.0 hours (interrupted)
Body movement: 0 minutes (hall walking to come)
Weight: n/a
Number of FEMA troops on my block teaching wives how to be submissive: 0
Currently reading: n/a (chemo brain)

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[links] Link salad knows that everything is awesome when you’re part of the team

How my husband forgot sexWhen we were younger, he was the one who taught me to explore. Then he had cancer surgery — and came out a virgin. Sigh.

A Rainbow Pileus Cloud over Zimbabwe

Why Mount Hood’s next eruption will be like a big blob of toothpasteMixing of hot and cold magna can bring a volcanic eruption in as little as 60 days. Volcanic eruptions at Mount Hood occur when cold magma, stored like ‘peanut butter in a refrigerator,’ mixes with hot magma from deep within the Earth’s crust, say researchers. That would be Portland’s friendly neighborhood volcano.

Kitties teach scientists a thing or two about geneticsCats, the patron saints of the internet, are typically not thought of as being at the forefront of genetic research. Their lack of opposable thumbs really limits their ability to run a proper DNA sequence, after all.

Hole-y Phobia May Have Evolutionary Origins Images that induce trypophobia, the fear of holes, share visual features with images of certain venonmous animals, implying that the aversion has an evolutionary basis. Trypophobia?

After 400 years, mathematicians find a new class of shapes

“Don’t Buy Shirts in Herat”: the Lost World of the Hippie Trail — Oh, man, to have lived this.

Rethinking a Zero Tolerance Approach to “Female Genital Mutilation” — Wow am I having a hard time wrapping my head around this.

Drug site Silk Road wiped out by Bitcoin glitch

World’s Smartest Company: Illumina — These guys did my Whole Genome Sequencing.

Capital One says it can show up at cardholders’ homes, workplacesThe credit card company’s recent contract update includes terms that sound menacing and creepy. Not “sound menacing”. “Are menacing.” World’s creepiest company.

National clown shortage may be approaching, trade organizations fear — There’s always the GOP congressional delegation to draw from as deep bench. (Via [info]danjite.)

Who Believes that Astrology is Scientific? — A paper on the correlations between belief in astrology and political affiliation. Which, surprisingly, show liberals to be the bigger idiots. Just what this country needs: further validation of non-evidence-based thinking. (Via [info]ericjamesstone.)

Bill Nye Science Guy to Debate GOP Rep Gohmert on Gravity

Obama’s Tea Party Cousin Who’s Running for Senate Compared President to Hitler — Running on the Godwin ticket, I see.

The evolutionary puzzle of homosexuality — Fascinating.

May a Man Marry a Man? A Medieval Debate — The alleged logic of opposition to same-sex marriage hasn’t really changed since. (Via Slacktivist Fred Clark.)

Kansas Gets Their Hate OnBut don’t call it discrimination.

Noose tied on Ole Miss integration statueThe FBI on Tuesday was helping investigate who tied a noose around the neck of a University of Mississippi statue of James Meredith, who, in 1962, became the first black student to enroll in the then all-white Southern college. Stay classy, conservative America. It’s what you do best.

What Information Are Stun Guns Recording? — It’s sort of the equivalent of putting serial numbers on bullets. I wonder how long the reservoir of these tags lasts. (Via David Goldman.)

After background checks were scrapped in Missouri“This study provides compelling confirmation that weaknesses in firearm laws lead to deaths from gun violence,” Daniel Webster, director of the Johns Hopkins Center for Gun Policy and Research and the study’s lead author, said in a news release. “There is strong evidence to support the idea that the repeal of Missouri’s handgun purchaser licensing law contributed to dozens of additional murders in Missouri each year since the law was changed.” Moar guns, to make us all safer!!

VW workers may block southern U.S. deals if no unions: labor chief — I find this whole ongoing VW-in-Tennessee story a little weird.

One-Percent Jokes and Plutocrats in Drag: What I Saw When I Crashed a Wall Street Secret Society

America’s First President Was The Tea Party’s Worst Nightmare — But, but, tricorn hats!

Remember that thing called the Unitary Executive Theory, Republicans? Obviously not.

UK Court: David Miranda Detention Legal Under Terrorism Law — A proud day for civil liberties.

?otD: Are you living the dream?


2/19/2014
Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 10.0 hours (solid)
Body movement: n/a (feeling poorly)
Weight: n/a (feeling poorly)
Number of FEMA troops attacking religious liberty: 0
Currently reading: n/a

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[cancer] Field notes from Cancerland, gearing back up for the hospital edition

Where’s Jay

I am back in Rockville, MD, with Lisa Costello and Dad, waiting for the call to go back into the hospital. We had a lovely week in Ocean City. At this point, given the extra step of the mutation-driven selection of my TIL cells, I don’t expect to go into the hospital before next week, but anything is possible.

The weather outside is frightful

Not really. Though it’s been mighty cold almost the entire time we’ve been in Maryland, including the December/January trip for study enrollment. Not one, but two polar vortices. Meanwhile, back in Portland, snow accumulation yesterday was about 10 inches. With up to an inch of ice atop that by tonight thanks to freezing rain. This in a metropolitan area with no snow plows, salt or sand trucks, or (except for the winter sports people) much experience in snow driving. [info]the_child has been home from school since midday Thursday, and I’m pretty sure is getting cabin fever.

Restarting my routines

This morning I spent ten minutes on the recumbent bike in the hotel gym. That’s the first time I’ve exercised (other than incidental walking around) since the surgery. My legs and lungs were doing fine, but I was starting to get pain in my right chest, associated with the surgery site, so I stopped. I also resumed my formal meditation practice this morning, albeit at a shorter time than usual. So I’m getting back to what passes for normal these days. Until the hospital interrupts it all again.

The chest pain

No, not in the heart attack sense. Post-operative pain and discomfort in my right chest. The actual surgery wounds vary from inert to uncomfortable to mildly painful, depending on my body posture and activity level. Lying in bed reading Facebook, they don’t bother me at all. However, the knot of pain in my rib (number six, I think) persists with annoying consistency. The pain knot isn’t actually at any point directly affected by the surgery. I believe, based on my prior experience of my left thoracotomy back in 2009, that I’m experiencing referred pain from the surgery site.

To be clear, everything I have now is low-grade pain, falling somewhere between discomfort and two or so on the pain scale. Irritating and distracting, but not debilitating. Given that I’m only seventeen days out of surgery, that’s just fine with me.

The intersection of surgical recovery and terminal decline

All of the above being said, my oncological hypochondria persists. I should be moving along nicely into my terminal decline about now. So I wonder, is this chest pain a symptom of larger issues? Am I not going to heal completely from the surgery due to my body’s depleted ability to respond? Why is my GI doing [whatever it’s doing today]? I’ve been oversleeping, by my standards, but I know that’s perfectly normal for post-operative recovery. I keep wondering if I should be doing better than I am. It’s a lovely place to be, inside my head.

Attitude

I’ve had a number of occasions to recount my medical history recently, ranging from abbreviated casual conversations to my recent visit to the urgent care center in Ocean City to have my stitches removed. Almost without exception, people compliment me on my attitude. You know what? My attitude sucks. It’s terrible. I’m always torn between rage and grief and fear. But I don’t wear that around. I don’t lead with it, and I rarely follow up with it. Not because I’m suppressing or in denial. Rather, because angry and depressed is no way to live. So I choose otherwise. But the hard, bitter reality is never far from the surface. Whenever someone tells me I have a good attitude, I can feel the monster flashing a fin.

Still looking at death, every day

In the car driving from Ocean City to Rockville yesterday, Lisa Costello talked about what we refer to as “cancer thoughts”. Mine and hers, though mostly mine. It’s not a frequent topic between us. For one thing, most of what needs to be said has been said. For another, it’s a godawful buzzkill. Most of the time you just have to live your life. Even now, when I’m a giant sack of tumors with a punched ticket, we still have to live our lives. But it’s always there. Breathing in my ear. Freezing my heart. Talking to me in the twinges and cramps of my body. There is no escape.

I miss my willful innocence.

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[links] Link salad can’t sell you what you need

TOC: The Mammoth Book of Steampunk Adventures — In which I have a reprint novelette, “Benedice Te”.

Worst Day of the Year Ride Canceled Because of Bad Weather — Ah, Portland. (Via my sister.)

Put a monocle on anything and it looks classy — Mr. Peanut, is that you?

That’s “Heavy”: The Mind-Body-Metaphor Connection — This is fascinating. In English, and several other languages as well, weight is used as metaphor to signify importance. The authors hypothesized that this abstraction can be triggered by concrete experiences of weight, like holding something heavy. They call this “embodied cognition.”

Can tumors be transplanted? — Uh…

Why do Americans spend so much on pharmaceuticals?

The Evidence Piles Up: Antioxidant Supplements Are Bad For You — Ooops. (Via David Goldman.)

Crowdfunding’s Effect on Venerable Nonprofits Raises ConcernWebsites now let people ask for charitable support for their own causes, but some fear that such sites will drain donations from established nonprofits. (Via Dad.)

Plate tectonics set the thermostat for early animal lifeSwitch from snowball to hothouse conditions driven by continental collisions.

Mechanism Important for Photosynthesis was Present in Ancient Microbes 2.5 Billion Years Ago

Earth’s Oldest Land Predators Had ‘Steak Knife’ Teeth

Glimpsing Heat from Alien Technologies

What Noise Does the Electric Car Make? — I was nearly struck by an electric scooter in China, the rider moving fast at night with his headlight off, presumably to conserve battery. Fast and all but noiseless.

Hamline professor’s post on student loan debt goes viral — When I started at the University of Texas at Austin in 1982, tuition and fees for a full 18 semester hour load were about $360. When I graduated in 1986, thanks to conservative-driven cuts in subsidies for higher education, it was well over $2,000 per semester. Costs have soared many times over since then, because we as a society have explicitly chosen to make higher education less and less accessible to each succeeding cohort of youth.

(GOP) Rep. Has Cordial Chat About Whether Obama ‘Should Be Executed’ — This piece is just creepy. Now try imagining the firestorm in Your Liberal Media if a Democratic congressman had had this conversation about Bush or Reagan.

?otD: Did buy it off the shelf? Did you grow it from the seed?


2/8/2014
Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 7.5 hours (fitful)
Body movement: n/a (post-operative)
Weight: n/a (traveling)
Number of FEMA troops on my block who aren’t descended from monkeys: 0
Currently reading: n/a

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[science] Signal boost for Nerd Nite in the PDX area

My friend Amanda puts on a really terrific series of booze-and-brains events in the Portland area. I spoke at one of the first Portland Nerd Nites last spring, talking about Whole Genome Sequencing. She’s branching out into the wilds of Washington state, Vancouver to be specific. So here’s some signal boost to get some of y’all Portlandians and SW Washingtonians out to live and learn. As it happens, I’ve seen Dr. Sherman talk before, and he is freaking hilarious.

Nerd Nite Vancouver #1 – Lust, Chocolate and Prairie Voles: The Neuroscience of Pleasure and Love

When: Wednesday, February 12, 2014, doors at 6:00pm, event at 7:00pm
Where: Kiggins Theater, 1011 Main Street, Vancouver, WA
Cost: $8.00 suggested cover at the door
Come early if you want to order food and drinks and get a good seat!

Is the brain chemistry behind our love for chocolate equivalent to that which drives infatuation with a new lover, the love of a particular song, or addiction? How does the brain sort out pleasure and discomfort? What drives our decisions to stay with one person for life or go from one lover to another, never settling down? This Nerd Nite will focus on these and other questions that reveal much about how neurochemical changes can have major effects on our behaviors—how we love, what we love, and who we love.

Dr. Larry Sherman is a Professor of Cell and Developmental Biology and Neuroscience at OHSU. He was identified as someone who is “Changing our World” by Portland Monthly Magazine and the Oregon Museum of Science and Industry, and he was awarded OHSU Teacher of the Year in 2012.

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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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[cancer] In which my NCI adventures conclude, for now

Yesterday was my thoracic surgery consult, with bonus running about and a severely delayed lunch.

Dad, Lisa Costello and I got to the clinic early, but they went ahead and checked me in. A surgery nurse practitioner and a research nurse took some basic history, but the attending physician was not ready to see me yet. I was also advised by the nurse-manager from the immunotherapy group that I needed my pulmonary function assessment repeated due to some questionable results from Wednesday’s test, and that I had a test appointment right in the middle of my thoracic surgery consult. So we left the clinic without seeing the attending and had another pulmonary function assessment.

Apparently some of my numbers from Wednesday were just below a required threshold. The pulmonary tech ran me several times to see about getting me good numbers, then eventually sent me back to thoracic surgery without much comment, but my results in a sealed envelope.

When we got back, we waited about an hour and half to be seen. (This is very unusual in my admittedly brief experience of NIH.) At various points, doctors from both the thoracic surgery group and the immunotherapy group popped in briefly to tell us that they weren’t ready. We got no lunch break, because we didn’t when or how long we could leave.

At my home hospital, such a delay would almost certainly be a resource management issue or an emergency going on. At NIH, I figured it was more likely about the science. As we idled, I speculated that the reason we were idling was that the two teams, thoracic surgery and immunotherapy, were arguing about my eligibility.

I eventually went out and asked if we were still in queue. Shortly thereafter, the thoracic surgery team turned out in force. The attending physician explained that there had been a significant discussion between their team and my doctors from the immunotherapy team. My pulmonary function test (I’m not sure which bit of it) was a couple of percentage points below the cut-off for trial participation. This despite me self-evidently functioning normally in terms of everyday health and physical activity. The pulmonary function did not seem to be an issue at all with respect to the proposed lung surgery. The two teams eventually agreed on a waiver of the requirement.

The net outcome was that I am approved for the surgery on January 23rd, which will harvest tumor tissue for the cell growth process. The infusion process will start 2-3 weeks after the surgery date, depending on how well and quickly my harvested immune cells grow in the lab.

We discussed the surgery itself. There are potential targets in both my lungs. The thoracic surgery teams plans a laparoscopic approach. They are concerned about the left lung, due to my prior surgery there. Even though that is apparently the best candidate tumor, the surgeons felt there is a good chance of adhesions between the lung and the chest wall, as well as other scar tissue, complicating access. There are two smaller tumors in my right lung which are also fairly accessible, and they may prefer to go after those. That decision will be made sometime soon in consultation between the two teams.

If the laparoscopic approach is successful, I can expect a two-to-three day post-operative recovery period. If they have to go open incision, I can expect a four-to-five day post-operative recovery period. That latter is consistent with my prior experience of lung surgery. I will also have a chest drain. (I have to say that having my chest drain removed after my lung surgery back in 2009 was easily one of the most unpleasant somatic experiences of my life. And I’ve had a lot of unpleasant somatic experiences…)

I will be required to report a day early on January 22nd, for another CT scan as well as admission to the in-patient facility that evening. Pre-op prep will start around 8 am on the 23rd. I will be in surgery for two to three hours if laparoscopic, a few hours longer if open incision, before going to recovery.

In the mean time, I have been strictly enjoined not to come down with a respiratory infection or other illness. They will not operate if I am ill.

All of that means I will have to fly back to Maryland no later than the 21st, but I will ask to fly a day or two earlier in order to have a margin of error in the event of flight delays, weather problems, etc.

When we were done in the thoracic consult, they sent us down for an immediate appointment with the preoperative anesthesia group for an assessment. This was the thoracic team being kind, so we didn’t have to change our flights tomorrow and come back Monday. This also meant we still didn’t get any lunch. That appointment was more than a little strange as well, as the anesthesia nurse had no idea what I was doing there. The medical record-keeping hadn’t caught up yet, and I wasn’t in their surgery log.

The nurse took a history, seeming surprised that I didn’t know which lung they were planning to cut open. We talked about my drug reactions, my issues with medical adhesives, and the whole opiate/constipation thing. Eventually we escaped. We had a drive-through lunch at 3 pm, before our 5 pm dinner.

All objectives were accomplished, and we are going forward with the study, but there was a period of time there when I was afraid I was about to be washed out. At this point, I think everything is done except confirming my return travel date.

Wish me luck.

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[cancer] Field notes from Cancerland, further adventures in Maryland

NIH tech support

Yesterday morning, I got a call from NIH tech support. It had been on my to-do list to call them, as I was having trouble accessing their patient portal view the Web. They had noted the failed access attempts in the log, and the tech support person had tracked down the problem and solved it prior to calling to inform me of all this. That is literally the first time in my life I’ve gotten a proactive call from a tech support team about a issue I was having personally. (I’ve occasionally been on the receiving end of calls or notifications of system-wide events, etc., as we probably all have.) Tell me again how the government can’t do anything right?

Symptoms

I had another cold flash Tuesday evening. We intercepted it at the start and headed off the worse, but it still was no fun. Likewise, the last few days I’ve been struggling again with fatigue bordering on the pathological. And the area around my liver has been aching a lot.

Likely as not, this is all just physiological manifestations of stress. Things are going quite well here at NIH, but it’s an enormous amount of information and a lot of tests and procedures all happening at once. Dad says I made it through last week on adrenaline. I guess this is the crash week. However, my oncological hypochondria is in rare form. And in truth, we are getting into the window where I would expect to begin seeing overt physical symptoms of my terminal decline. My palliative care doctor recently suggested that the cold flashes could be from “the evil humors of the cancer”, for example.

So, yeah, the world is running down.

Procedures

Yesterday at NIH I had an echocardiogram and a pulmonary assessment. I can report that I in fact have both a heart and a brain. Informally, the word was nothing unusual seemed to be present on either test. I will know more formally on Friday, I think, when I see the thoracic surgery group.

Today I have the leukopheresis. This starts at 7:30 am with a surgeon implanting a dual-lumen Hickman catheter in my femoral artery. It pretty much goes downhill from there, I suspect. They’ll be harvesting leukocytes to facilitate the treatment regimen which should commence in early February.

I must confess to a high degree of anxiety regarding this procedure. It’s one I’ve never had before, and I’m not really looking forward to having the catheter implanted. This uneasiness is just my backbrain ticking over, I know, as I’ve experienced far more painful and dangerous things in the clutches of the medical system, but I’m still having a tough morning.

The study I am enrolling in

I still don’t know what the limits are on what I can discuss, but this is some pretty cool science and cutting edge technology. I’m excited to be a part of it. I’ve asked for guidance on how much I can talk about the science, because a lot of you reading will likely be fascinated to hear about it. I will be formally consented tomorrow morning, which puts me in a formal patient relationship with NIH. This has various implications around logistics and timing. More when I can.

The cost of doing this

NIH will pay for my air travel to and from Portland for the different portions of the study. I expect to fly home 1/11, and back around 1/20 for thoracic surgery to have a wedge resection performed on my left lung. Then home around 1/28, and back around 2/5, for a much longer stay with a basket of treatments. As almost all my time here will be in-patient, I don’t have direct housing expense for me. But Lisa Costello and Dad are coming and going with me. The precise air travel dates are unpredictable, and are set somewhere between two days and a week in advance for each arrival and departure, separately, depending on various clinical factors. If you know anything about airfares, you know how utterly ghastly this is from a cost perspective. On top of that, their housing for most of January and February (I’ll be in the hospital 4-5 weeks overall), and our incremental expenses. It’s a mess.

Once I have a better handle on how I can talk about the science, I will probably work with a few folks to put together a science-driven fundraiser. As my recent posts on the costs of cancer hopefully made clear, if you’re in my position, you bleed money. I’ve about tapped out the funds from last January’s Sequence a Science Fiction Writer fundraiser, with my profound thanks to everyone involved. More to come on this as well.

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[cancer|personal] Progress is being made at NIH

We are advancing, albeit slowly, here at NIH. I have chosen a study out of the five we were offered across three teams of investigators. This in turn has led to more choices, some of which are dependent on lab work which is even now being done.

Today I have an EKG (again) and a pulmonary workup. We’ll also be chasing several administrative issues at NIH while we’re there.

Thursday I have a leukapheresis session scheduled. This include an outpatient procedure to insert a catheter in my femoral artery, as the veins in my arms are not suitable for the large-gauge needles normally used. I believe that will last much of the day due to the need to filter a very high volume of blood.

Friday I have a consultation with the thoracic surgery group. There may also be a consultation with the infectious disease group to formally clear up a rather odd lingering issue from my childhood overseas.

I expect to fly back to Portland on Saturday, and return to Maryland around January 21st for thoracic surgery on January 23rd. The goal of the surgery is a non-therapeutic resection to harvest sufficient tumor tissue for culturing of naturally-occurring healthy immune cells typically found interpenetrated with solid tumors. I will return again in early February for a rather complex series of treatments involving a roughly three-week inpatient stay at the hospital on the NIH campus.

Some of the above may change, depending on the lab work results I mentioned, but that’s the current plan. I’ve been cleared to discuss the treatment in a general way on the blog and in social media, but am awaiting another conversation with the physicians before getting into detail about the science and the treatment processes. I want to make sure that I am respecting any confidentiality issues around the research in progress.

I will say that NIH sheds a whole new light on the old conservative scare phrase, “I’m from the government and I’m here to help.” This is socialized medicine in its most literal American incarnation, and it’s damned good medicine with a very positive patient experience so far. Your tax dollars and mine are hard work, doing things that may eventually help cure millions. It’s an honor to be a guinea pig here.

Onward we go.

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