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[personal] Dining with the Slacktivist

Dad, Lisa Costello and I met Slacktivist Fred Clark for lunch yesterday. Fred was kind enough to drive down from his home in Pennsylvania to dine here in Rockville, Maryland, near our hotel.

It was a fascinating lunch. Fred is a gentleman, as well as a smart and entertaining human being. I already knew this from reading his blog for years now, but it was fun to confirm that in person. We talked about families, life and cancer for a while, then veered off into theology, sociology and the Christian experience. Fred’s perspective and mine are rather different in some important ways, but quite well-aligned in other ways just as important. Plus we both went to Christian schools as kids, albeit under very different circumstances.

I was highly entertained, learned more than a few things and had a very good time. I am pretty sure Dad and Lisa did, too, and I hope Fred did as well.

The lunch was one small bonus for this trip.

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[politics] You’d better run said the man with the gun

A day or two ago, [info]kenscholes and I were enjoying a leisurely breakfast in The Bomber, in Milwaukie, OR. It’s a sleepy little diner mostly patronized by older folks in a sleepy little suburb south of Portland. In other words, about as a dangerous as your living room. Probably less so.

A very large man walked in with a pistol on his hip, open carry. I am extremely dubious that he was a peace officer off duty, based on his hair, clothes and grooming. I turned to Ken and said, “We need to leave.” We did. I didn’t follow my normal policy of dialing 911 whenever I see a weapon in public because the diner staff had taken no action.

Open carry scares the hell out of me. So does concealed carry, frankly, but concealed carry is a defensive measure, at least in theory. Open carry is a very deliberate threat. It’s a gun owner saying, if in my judgment you are dangerous, I will shoot you down.

I am far, far more frightened of someone who feels the need to walk around openly displaying a handgun than I am of any theoretical criminals that might have been menacing Milwaukie that day. The fact that this guy had that need to threaten everyone he encountered telegraphs some very negative information about both his emotional stability and situational judgement. Open carry isn’t about safety, it’s about dominance.

The weird part is how hard this is to prove. The same conservatives who loudly assure us that firearms are safe and that firearms improve public safety have for decades banned Federally funded research into precisely those questions. If guns were such an excellent safety tool, wouldn’t gun rights enthusiasts be eagerly embracing the research to underscore their point?

Quite the opposite. A firearm is a tool for killing. It serves literally no other purpose. All the collateral uses such as target shooting or hunting are simply practice for the killing. Even the gun lobby knows better, hence the research ban. They just don’t want people thinking in those terms because it’s bad P.R.

I do not want to be around another human being who feels the need to threaten to kill me for the sake of their own sense of security. It saddens me that this is legal, acceptable behavior, and people who practice open carry in normal, everyday situations scare the living hell out of me.

This is not a well-ordered militia, as the always-neglected part of the Second Amendment calls for.

30,000 people die every year in shootings in this country. It is one of the great shames of our society, and will eventually be one of history’s greatest puzzles that we as a society embraced this wholesale slaughter when every other similar industrialized society of our era managed a much more peaceful solution with much lower death rates.

Why would I want to be a part of conservative America’s rain of blood just to satisfy some guy’s paranoid ego?


If past experience proves true, I will catch a lot of flak for this post. A note to head off at least one line of criticism: I am quite comfortable with firearms, am a rather good shot, and understand range safety. In other words, I am not speaking from some thick-headed liberal ignorance. It’s precisely because I understand guns that I don’t want to be around them.

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[personal|cancer] Friends and aftermaths

Yesterday, [info]scarlettina came over to visit Lisa Costello and me and [info]the_child. She made her mother’s brisket recipe, then [info]davidlevine and [info]kateyule joined us for the consumption thereof.

It was fun to see them, and fun to hang out, but the aftermath was tough.

As dinner was winding up, I came down with a very bad chill. No shakes, no fever, nothing else along the lines of the opening salvo of a cold or flu. Just a bone-deep chill, and incredible fatigue. I wound up having to go off to bed and lie down under the blankets, the electric one cranked up all the way to high. After about an hour or an hour and a half, as I was finally falling miserably asleep, the chill abated somewhat.

This is the third or fourth time I’ve had one of these “cold flashes” in the past month. I’m suspecting ever more strongly this is a precursor of my body’s functional breakdown in the end stages of my terminal cancer. They come on when I am tired, underfed, or otherwise stressed, but they are neither predictable nor obvious. At least not yet.

It scares me, and it wears me out hard.

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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|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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[movies] Frozen and The Hobbit: The Desolation of Smaug

In the past week, I have managed to see both Frozenimdb ] and The Hobbit: The Desolation of Smaugimdb ].

My capsule reviews…

Frozen: Does for Nordic culture what Brave did for Celtic culture.

The Hobbit: The Desolation of Smaug: The Starship Troopers of fantasy movies. A feature film made from 2.5 chapters of a completely different book. Fun, though.

Slightly more detailed thoughts…

Unlike almost every other recent animated film nominally targeted at the children’s demographic, Frozen really did not have an adult layer. A handful of specific jokes and lyrics, perhaps, but that’s about it. This film relentlessly targets the ‘Disney Princess’ demographic. Also, as [info]elusivem pointed out to me, it was clearly written to become a Broadway show. The first half of the movie is almost nothing but show tunes numbers, and the voice cast are largely Broadway stars. As a movie-goer, I resent this with the same low-grade irritation that I resent movie scenes clearly intended to fuel the forthcoming video game. I want to watch a movie that was intended to make sense as a movie, not go see part of a multimedia, multichannel marketing vehicle.

As for The Hobbit: The Desolation of Smaug, yay Peter Jackson for having the money and the sponsorship to make eight or nine hours of Lord of the Rings fanfic. When I think about the book, these movies are such an utter waste of potential. (This is very nearly the opposite of my feelings about Jackson’s Lord of the Rings films, mind you.) When I take them on their own terms, these movies are more entertaining than my complaint implies, though the second one is much better than the first. And it’s mildly weird to see Legolas look decidedly middle-aged after his youthful appearance in a movie set decades later. You’d think Weta could have done something about that. Otherwise, I stand by my capsule review. This one is fun if you leave your memory of the book at home.

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[cancer] Yesterday, all my troubles seemed so close at hand

Yesterday was a difficult day. It began with early morning phone calls to the NIH in Maryland, and ran all day in a tight chain of events, almost everything behind schedule (my oncologist was an hour late), each missed time slot impacting the next. Appointments, meetings, consultations. Many of them with frustrating outcomes. The kind of day with a lot of irritating and difficult moments, and no time between to recover and process what happened before proceeding to the next.

On the plus side, [info]mlerules got me to a nice dinner with Lisa Costello at Podnah’s Pit BBQ, followed by a nice soak for the three of us in the spa at Common Ground Wellness Center.

This, of course, following Monday’s travel madness, and a Tuesday just as filled with appointments and frustrations. I had higher hopes for today, but so far today’s pretty much following the template for the week.

This whole disability thing? I’m busier and more stressed than I was when I was working full time. How the hell does that even happen?

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[personal|dreams] Die Traumdeutung

It’s 13 degrees outside, with a windchill below zero, and snowing merrily. Supposed to accumulate two to four inches today here in Omaha. Luckily I am flying tomorrow, which is supposed to be clear and calm, though still colder than Dorgau’s hindmost paps.

Low-key day today after yesterday’s roaming about the wilds of southwestern Iowa. I think we’re catching a movie this afternoon, and an early dinner. Another friend may pop by the hotel to visit a little while this evening, weather and schedule permitting.

Last night I had, as usual, complex dreams. The part where my house was flooding to the window sashes in clear, warm water wasn’t hard to understand. My bladder has a sharp voice in my nighttime wanderings. The part where Zachary Quinto leapt out of a wrecked VW bus to attack me with a badminton racquet was a little harder to interpret, but I went with it. After fighting Mr. Quinto off, of course.

That last part is odd. While I often dream about real people, either directly or in the form of a dream avatar, I quite rarely dream about people I do not actually know personally.

I’ve spent time with the folks from my prior Day Jobbe. That was good but also sobering. I went on disability there just shortly after my tenth anniversary of service. That makes the Day Jobbe my longest-tenured employment in 26 years of working professionally across three related industries, by a fairly substantial margin. A big part of my life. It was work I enjoyed, with people I (mostly) liked, in a field where, while I wasn’t exactly working for the betterment of mankind, neither was I helping make anyone’s life worse. It was also work which enabled me to have a writing career through a good work-life balance and a decent paycheck. And, later it on, it was work of a sort that allowed me to segue into the deeper phases of my illness without an abrupt economic disruption, both through disability-friendly management and workplace policies, as well as a very good benefits package that turned out to make a critical difference in my life in at least three different ways.

So a lot to reflect on here in Omaha. Plus, well, Zachary Quinto. And snow.

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[photos|travel] My trip to Omaha (at least so far)

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I flew there, of course

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Hanging with the pooches

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A friendly meighborhood duck

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Yesterday we set out in the car of [info]garyomaha

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As always in life, we drove down uncertain roads

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Until we came to my joint in Shenandoah, Iowa

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A slightly more sobering neighbor

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Me and my namesake (or vice versa)

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The store was full of cool old things, like those sliding ladders, and the manager was very kind about us wandering around gawping and photographing

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[info]elusivem and [info]garyomaha enjoyed old fashioned fountain treats (I had an iced tea)

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Themselves

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We then looked at interesting old buildings in Shenandoah, which reminded me of my grandparents’ town in north Texas when I was a small boy in the late 1960s

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Including a dry-docked caboose

As usual, more at the Flickr set.

Photos © 2012, 2013, Joseph E. Lake, Jr. and M. Jones.

Creative Commons License

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

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[personal] Another day in Omaha

Yesterday was quite fine, but I overslept badly last night, in more than one sense of that phrase. I was asleep, or at least nominally unconscious, for nine hours. My sleep was very fitful, and plagued with odd dreams, mostly about unsuccessful attempts at travel insofar as I can recall.

Once again I woke up later than I hoped, and have wound up feeling rushed this morning. I have a tentative 10 am appointment at my hold workplace, and a firm 10:45 am leading to a group lunch. I’m planning to spend the afternoon with [info]garyomaha, then he and I will join some more friends for dinner.

How can I feel so busy when logically I am taking things easy? One of life’s sweet mysteries. Meanwhile, efforts proceed apace on securing clinical trials, and various other life issues such as car repair, fixing my broken recliner, and dealing with the problems I’ve been yammering about of late. As for the personal generosity that has been shown to me this week, thank you so very much. You know who you are…

Off to the cold soon. It is currently zero degrees F outside here.

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