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[links] Link salad wakes up in its own bed for a change

Arriving late to the Sous-Vide partyJersey Girl in Portland on cooking.

The Singularity is Still Closer than it Appears — A response to Ramez Naam.

Effects of bullying may add up in kids: study — Also, this just in: water is wet! Bullying sure played a huge part in my 1970s childhood, and the adult response was largely what we would now call victim-blaming. It’s shaped my whole life. Luckily for me, I wound up in a high school where I could hold my own.

Twenty-five percent of Americans don’t know the Earth revolves around the Sun, survey finds — Sigh.

Following a long road to ancient DNASvante Pääbo, the man behind the Neanderthal genome, tells his story.

How Wolves Change Rivers — I’ve run into this before. It’s still damned cool. (Via David Goldman.)

Santa’s revenge: Arctic ice may be putting US in a long, deep freezeEvidence is mounting that a warming Arctic has set the jet stream loose.

Becoming A Moral MinorityJim Hinch tracks the decline of conservative religion.

Snake Salvation pastor dies from snake bite — Uh, yeah. That’s what happens when you convince yourself that faith trumps reality. Reality doesn’t care about your sincerely held beliefs.

Dear GOP: Top 5 Biblical Marriage Moments far worse than Gay Marriage — Ah, Biblical marriage. Conservative America really doesn’t read its own faith text at all.

Seriously, what is wrong with Kansas?It’s all about ginning up feelings of persecution among so-called “values voters” … over having to surrender the long-held prerogative to persecute. Lacking any grace or humility, these demagogues won’t leave the scene until they’ve discharged all their poison into our politics.

It’s the gunsHumans get into arguments, they get in each others faces and they sometimes come to blows. There is no way to ensure that will not happen. But these minor beefs — like texting in a movie theater — would very rarely be deadly if people weren’t packing heat! That’s the real issue here. The gun nuts like to say that an armed society is a polite society. That’s just another way of saying that if you are carrying a gun you can make people do what you want them to do — stop texting, stop playing music you don’t like, stop walking through the night with with some candy and a drink from 7-11, even “that’s my parking spot.”

Stand Your Ground is simply an invitation to more killing, not less crimeWe found that homicide rates in states with a version of the Stand Your Ground law increased by an average of 8 percent over states without it. Actual research, with actual “facts” and “data”, firmly backing what I and many other liberal-progressives have long thought about Stand Your Ground laws. This will of course mean nothing to gun rights enthusiasts, whose right to use deadly force at their sole discretion trumps my safety and yours.

White Men’s Freedoms and Black Men’s LivesThe research found that [Stand Your Ground] laws increase the likelihood that a homicide will be considered “justified,” but only in cases where a white person is accused of killing a black person.

A Bitter Valentine’s Day — A letter from inside Guantanamo Bay prison. Your tax dollars at work. (Via [info]danjite.)

?otD: Sleep well?


2/17/2014
Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 7.5 hours (fitful and in pain)
Body movement: n/a (feeling poorly)
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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[cancer] Getting the brain MRI, the further adventures of Self-Directed Patient Man

Getting the brain MRI this past Wednesday was a pretty tedious process.

First of all, in the continuing tradition of a daily crisis in my life, just as I was sitting down to dinner with Lisa Costello, Jersey Girl in Portland and C—, the hospital called to tell me that their MRI machine was down and my appointment that evening was cancelled.

I had a polite shit fit about that over the phone. I explained that I am a terminal cancer patient going to NIH next week to try to enter a clinical trial which might extend my life. I explained that I needed the MRI performed, read and released to me by mid-day Thursday so I had time to request a disc from the Imaging Library and overnight it to NIH for Friday delivery, as this was part of my qualification process for the trial.

A few moments later the person on the phone came back and said that I qualified for the exception list. The other MRI machine was up and running, but they were so backed up that they were only scheduling people with critical and immediate needs. My 9:45 pm appointment was rescheduled for 9:45 pm, but on the other, still-working MRI machine.

Having dispensed with my weekly requirement for adrenaline surges (for about the fourth time this week), we proceeded to have our dinner and go for our soak at Common Ground Wellness Center. Then Lisa and I hied ourselves over to the hospital complex, because we figured being in the waiting area and thus undeniably in line for the procedure should something else go wrong was all to the good.

This resulted in us spending nearly three hours in a deserted waiting room in a deserted building at night. A few other patients wafted through. MRIs take a long time, so three hours was enough for two people before us. A rather put upon, but still appropriately polite and professional, tech made occasional appearances. Mostly we sat and played with our iPads and tried real hard not to fall asleep.

While I’ve had MRIs before, I’ve never had a brain MRI before. If you’ve never seen an MRI machine, rest assured that they are terrible traps for the claustrophobic or the circumferentially enhanced (I fall into that latter category myself). And frankly, much time spent in an MRI would drive anyone to claustrophobia. And they are noisy. Like Anvil Chorus noisy. Like sticking your head in a jet engine noisy. Something on the order of 125 dB clanging right next to your ears for however long you’re in there.

I was handed earplugs. A mask was put over my entire head that looked sort of like a cross between the Alien facehugger and something Dumas wrote about, rendered in the bland, taupe, pebble-finished plastic so beloved of technology designers. Pads were inserted around my head, after a brief discussion of how surprisingly large my skull is.

I then spent forty-five minutes in the tube.

Lately I’ve been meditating in the mornings. As a formal practice, I mean, not the lie-in-bed-and-groan-about-morning meditation that we all indulge in from time to time. So I meditated inside the MRI tube for forty-five minutes. Which is about like trying to meditate on the flight line of an aircraft carrier. On the plus side, the tech later reported that I held amazingly still, which helped them get good images as quickly as possible. On the minus side, I had my head in an MRI tube for forty-five minutes.

We also had yet another discussion of why I needed a stat read from Radiology, and what I was doing with the scan. The tech confirmed that I did indeed have a brain. The next day, Radiology confirmed that I did indeed have no intracranial metastatic disease. (This was the desired outcome.) After a certain amount of me calling around and cajoling people Thursday morning, I got my discs and sent them out.

Once again, I had to be pushy and pushy again. Self-directed patienthood is not for the faint of heart or unassertive. But combined with Tuesday’s CT scan adventures, I pulled two major medical procedures out of my treating hospital in two days. It sure helps that my providers have come to know me well, and understand that I’m not a loose cannon. It sure helps that my health insurance carrier covers this stuff without pre-authorization. It sure helps more that I know who to call and what to say.

At any rate, the brain MRI is in NIH’s hands as of yesterday afternoon, and I am still off at the end of this coming week.

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[cancer] The adventures of Self-Directed Patient Man

Yesterday was very much the far side of nuts.

Let me explain.

No, there is too much. Let me sum up.

While I was in therapy yesterday morning, one of my National Institutes of Health contacts called, a research nurse who’s handling study recruitment. They left me a voicemail saying the Principal Investigator on one of the studies I am interested in would accept a CT scan from from my treating hospital within the last 30 days in lieu of trying to schedule a CT at the NIH facility on my arrival. (Grudgingly so, I gather.)

I knew I had an active CT scan order in the system at my treating hospital. The original intention of this order was for me to have my two-month screen in January — we’d been proactive about getting into the system. So after thinking this through, I called my treating hospital. I found out that my oncologist is on vacation next week. If I wanted the scan done and released to me in order to get a copy to send to NIH, it had to be done right away. Otherwise it would get stuck in my oncologist’s queue during their absence, and be of no use to me in my current timeframe. I wound up talking to Radiology scheduling, who said they could take me immediately if I could get there right away. (As it happened, in the course of this conversation I was driving north on I-5 very near the facility. Yes, I was using a headset.)

I cancelled my already-rescheduled lunch date with Jersey Girl in Portland and popped by to have the CT scan on a right-then basis. Afterwards, I went upstairs to Oncology and politely asked about having a stat read request put on the scan. I was also trying to figure out how to cue my oncologist to release the scan to me as soon as possible, as they do not have clinic hours on Tuesday. The team at the Oncology unit told me to call back into the triage line an hour or two after lunch and see about getting a message to my doctor.

I then spoke to the NIH nurse, telling them I’d gotten the CT done on-demand and was hoping for the results to be released that same day so I could get a disc from my treating hospital’s Imaging Library and express it to them. A rather hilarious conversation ensued.

NIH Nurse: “My jaw is on my desk. You are the most self-directed patient I’ve ever dealt with.”

Me: :: laughing :: “That’s a polite medical term for ‘pain in the ass’.”

NIH Nurse: “Nooo… That’s a compliment.”

They also asked me if I could get a brain MRI to check for mets that might have crossed the blood-brain barrier. This is quite rare in my type of cancer, but it is possible. I told them I was dubious about getting that ordered here in Portland, and we agreed they’d schedule the brain MRI at NIH, probably for the afternoon of 12/30.

I got the appropriate NIH shipping address for delivery of the Imaging Library disc, then focused on contacting the clinic about getting my oncologist engaged to review the new CT scan and release it to me ASAP.

As it happens, my oncologist had already seen and released the scan promptly, even before I had reached out about having them read it. They emailed me and asked me why I’d had the scan early, was it for the NIH studies? I replied that it was, and mentioned the brain MRI request. Meanwhile, the Imaging Library was cooperative about releasing a disc to me immediately. They only needed a 45-minute lead time. So Lisa Costello took me back over to the hospital complex to score the disc.

About then, my oncologist went ahead and ordered the brain MRI. (All of this was happening more or less in realtime at this point, while Lisa drove us back to to the hospital to go up the hill to the Imaging Library.) I got on the phone once more with the schedulers, who actually found me an opening this coming night. It’s awfully hard to get an MRI on demand, as there’s a long waiting list for access. I have a 9:45 pm brain MRI up the hill in the main hospital, which should take about 45 minutes. There is a stat read request on that order as well.

My oncologist has agreed to watch their queue Thursday morning, and release the MRI results to me ASAP. I will then make the request to the Imaging Library and get it back out to my contact at NIH that same day for Friday delivery, if my luck holds.

This should improve the intake process at NIH as they will have everything they need to proceed, or to scrub me from the study if they don’t like something in the imaging files.

By the time I got home again yesterday evening, I was so exhausted I physically hurt. I was also having at attack of the chills, which may have been exhaustion, a reaction to the CT dye, a system issue stemming from my advancing cancer, or all of the above.

As [info]mikigarrison said, I was blasting through the walls with my ray gun. Not sure I’ve ever dealt with medicine in realtime on a non-emergency basis.

I want to note, with respect to my recent comments about constant crisis and never being able to hold a schedule, that yesterday was a perfect example. I’ve now had to reschedule Jersey Girl twice due to unexpected medical requirements. I spent most of yesterday on the phone, running around town, or actually in a procedure room, on a day that had no medical activity on my calendar when I woke up other than my therapy appointment. I’d actually thought to have an easy day.

This is how my life works lately.

As for the substance of yesterday, while I feel pretty darned accomplished, I also recognize that all of these victories are fundamentally futile. The CT results were frankly quite depressing. We’re fighting rearguard actions in a war the outcome of which was confirmed last spring. This does not stop me from grabbing every chance I can, wringing what I may from each passing day. But last night when I was in bed shivering under extra blankets and feeling logy and strange, I kept wondering if all this was worth it.

So far the answer is still yes.

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[cancer|personal] Trapped in a whirling morass of urgency, as my friends grow ever more distant

Last night I dreamt something long and complex, which is now lost to me. However, at the end of it, I was in a coffee house on a college campus somewhere. It was indoors, part of a student union building or some such. The students around me were of various ages, and one or two had small children with them.

I’d been drinking hot chocolate and reading. It came time to leave so I began to pack up. As I wound my scarf around my neck, my hat fell off. When I bent to pick up my hat, my gloves slipped out of my coat pocket. I couldn’t fit all my stuff into my pack. And so on.

Around me the coffee house was closing up. As people left, they kept dropping things too. I started trying to collect the other lost belongings in the hopes of returning them. The barista was pushing the tables to the back and stacking them so she could mop the floor. My table disappeared, and most of my stuff with it. I kept running around desperately trying to retrieve everything. I only succeeded in dropping more and more of what was in my arms, most of it not even mine.

It doesn’t take a psychology degree to work out the meaning of that. No more than most of my dreams. And this has been my week. If there is no significant crisis or disaster in my life today, it will be the first day since last Sunday for which that has been true. I have rushed from one problem to the next, solving few of them, and seeing most of them generate more problems like a runaway software process spawning malign threads.

Such is my life these days. This week has been an unusually pointed example. But in all seriousness, Lisa Costello estimated recently that based on the experience of the past few months, even on my best weeks I cannot get any three days in a row without something overwhelming happening.

This distraction factor spills over into everything. Ever since the cancelled trip to Europe, I have been unable to schedule social time with friends. The big stuff is more obvious — because my medical schedule keeps shifting so randomly, I cannot make commitments to out-of-town friends who need lead time to arrange work vacation days and procure plane tickets. Less stringently, I can’t even commit to Seattle friends who can be more flexible because they’re driving or taking the train or the Bolt Bus.

But even the local stuff gets killed. I’m going to Maryland at the end of the month to see about two different clinical trials at the National Institutes of Health. That means I won’t be here for my December 31st appointment with my palliative care doctor. They’re impossible to see on short notice, so I had to take a reschedule for Monday, December 16th. Exactly when I had a midday date with Jersey Girl in Portland. Her daily/weekly schedule and mine are so misaligned even normally that when I have to cancel with her, it can take us weeks to reschedule.

I can’t keep up with anything anymore, not with the absolute priority of maintaining what’s left of my life and health, and the resultant very erratic and frequent scheduling demands of that process. So my out of town friends slowly stop offering to come see me because I can never commit to a time. Most days I’m too rushed and fuddled to even be smart about keeping up emails or texts or phone calls whatever, so it’s harder and harder to maintain my relationships even remotely. My local friends get used to me cancelling and being unable to reschedule easily. My life narrows a bit more week by week, as it does in so many other ways.

My attention span degrades, my social availability degrades, and instead I am trapped in a whirling morass of urgency. I hate this.

Welcome to late stage cancer, Jay.

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[personal] The weekend and me

Lisa Costello and I both continue a bit under the weather. She thinks we have the same bug, I am not so certain, though she’s probably right. I feel more or less okay in the morning, after a very slow start and a night of oversleeping. By afternoon I am fatigued, logey, mildly headachey, and feel as if I have a fever, though I am not hot. Lisa has much the same symptoms, except with rather stronger headaches.

If she wasn’t going through it with me, I would assume these symptoms signal the beginning of my terminal decline, as they’re pretty close to what I’ve been told to expect. Lisa’s had this for about ten days, I’ve had it for about three. So either a slow moving bug, or the hastening of my demise. Cheerful, eh?

We did have a very nice family-and-friends dinner yesterday afternoon. Lisa sat it out at home, due to how ill she was feeling, and I wound up leaving early for similar reasons. Team E— made smoked pork butt, Jersey Girl in Portland made two potato salads, mom made Moroccan sweet potato salad, while [info]tillyjane and AH combined forces for a green salad and some challah bread. Plus various desserts.

Also, [info]the_child came home last night from her East Coast adventures, but Lisa and I had zonked out by then, so I still haven’t hugged her hello and heard whatever stories she has to tell.

Laying low today, we’ll see what tomorrow brings.

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[personal] Giving thanks

Today is Thanksgiving here in the United States. For the rest of you, I suppose it’s just Thursday. But whether it’s Thursday or Thanksgiving, this is as good a day as any for giving thanks.

I am thankful to my parents and my family for bringing me into this world and setting me on a path in life which has been more than satisfactory.

I am thankful for [info]the_child, who is the light of my life and the devilment of days, as it should be with children.

I am thankful for Lisa Costello for joining me in the last days of my life, and sharing love in a time which can be profoundly unloveable.

I am thankful for all the people who love me, and all the people I love. Friends, family, lovers, colleagues, the tribe here in Portland, Ken and John, my postal clerks, the guys at the Lamp and the whole team at Brooklyn Pharmacy — all you people who keep an eye out for me and check up on me and help me in ways ranging from tiny to life changing.

I am thankful for the publishing career I’ve had. I did not achieve even a fraction of my overweening ambitions, but I think if I had done so I’d be a smaller person than I am. One should always aspire to more. In any event, I have achieved so very much more than any rational hope would ever have dared, and for that I am very grateful to my mentors, my fellow writers, my agent and editors and publishers, my readers, critics and fans.

I am thankful for the life I still have, despite the terrible disease which haunts my body every day. I fully expect this to be the last Thanksgiving I ever celebrate, but it is also the sixth Thanksgiving since my cancer first came upon me. I am grateful to all the doctors, nurses, NPs, MAs, technicians, researchers, clinic staffers, and medically-inclined friends who have conspired to keep me alive even this long.

I am thankful to be here, and I am thankful you are here too.

Happy Thanksgiving.

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[personal] A slow day and a dinner out

Yesterday we were supposed to do another round of basement cleaning with Team E—, but I was just too tired to deal with it. So we laid low instead. Dinner was still on, though, at Deschutes Brew Pub in NW Portland.

A funny thing happened on the way to dinner. Team E— got delayed and couldn’t make it. But @MiriamAnneW (of Tor, my publisher) messaged that she was in town, and were we free for dinner. So we kept our plan and swapped out our dinner companions. Miriam brought @suddenlyjen (of Donald Maass Literary Agency, my agency), who was delightfully interesting to talk to. And while walking to the restaurant from the car, @radiantlisa and I ran into @PDXjerseygirl (a/k/a Jersey Girl in Portland), so she joined us as well.

A good time was had by all, except for me becoming fairly ill during dinner and not eating much of anything. Still, I lasted almost ninety minutes. Mostly it was funny because of how much the dinner morphed from when we planned it to when we sat down to eat.

You never know…

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[personal] Yesterday and today and tomorrow

Yesterday was another manic, overly full day. I attended a talk on the ACA implementation in Oregon, sat for a film interview for a couple of hours (not related to the Lakeside project), and was part of a very nice dinner party hosted by Jersey Girl in Portland at the house she shares with Lisa Costello.

Then last night the trazodone kicked in. I slept over ten hours. Given how short slept I’ve been for the past month, that was like a miracle. I normally detest sleeping so long, but man did I need it. As a result, I got a very late start on today (by my usual standards). I have a lot to do, but it’s not a full day’s worth of lot. And except for a lunch with Lisa Costello, [info]mlerules and half of Team E—, I don’t have any outside commitments.

So, yeah. I will finally get caught up on email and minor tasks. Which will mean I can write tomorrow.

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[photos] My Portland birthday party

From Friday, 6/7.

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Dad

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(Step)Mom

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[info]the_child and [info]tillyjane (a/k/a my Mom)

Read the rest of this entry »

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[conventions|photos] My day two of the Nebula Awards Weekend

Yesterday was my second and final day at the Nebula Awards weekend. Not to bury the lede, the award in my ballot category of Best Novella went to the excellent Nancy Kress for After the Fall, Before the Fall, During the Fall.

My parents and [info]the_child were there, along with my Aunt B— and Uncle L— from Texas.

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Dad and Mom

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Jersey Girl, Dad, Me, Mom

There was a comic convention going on next door, so some crossover happened.

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These are not the SF writers you are looking for

Still we had fun.

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Me and Jersey Girl, who’d never attended an SF event before

And though I did not win, I got to give away the Best Short Story Nebula to a charmingly shocked Aliette de Bodard.

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I’ll post more later about the emotional experience of this weekend, and how it has intersected with my illness. For now, suffice to say I had an amazingly good time. My family was pretty happy to be there. My thanks to chair Dave Gallaher, SFWA President John Scalzi, and everyone who worked so hard to make this all come together as fantastically well as it did.


Photos © 2013 N. Schaadt and others. All rights reserved, reproduced with permission. As usual, more at the Flickr set.

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