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[movies] Elysium and Ender’s Game

Yesterday whilst Lisa Costello was out being busy, [info]the_child wanted to watch a movie. She was really interested in Ender’s Gameimdb ], but wanted to wait for Lisa to come home and watch it. (Knowing of her interest, I’d previously decided not to get into the deeply problematic political issues around OSC, though later, after we finished watching, there was a teachable moment, which I shall describe below.)

So instead we rented Elysiumimdb ] whilst waiting for Lisa. Most of the reviews I’d seen of this movie had panned it, but I actually rather liked the film. It was basically a mashup of In Timeimdb ] and District 9imdb ]. Which is of course unsurprising, since South African Neill Blomkamp directed both District 9 and Elysium. The movie didn’t ask a lot from the viewer, and key elements of worldbuilding fell quite flat on even the most cursory critical consideration, but if you just followed the thread of the action and invested in both the eye candy and the dystopian porn, it held together. Plus [info]the_child and I got to talk about the fact that there are places in the world today just like the horribly decaying shanty towns portrayed in the movie’s grim future. A fun enough SFnal adventure where the show was mostly stolen by Jodie Foster, although Sharlto Copley did a fine job of chewing the rug hard enough to dent the floor, while Matt Damon played his slightly superpowered everyman version of Matt Damon.

After Lisa came home, we tooled up and rented Ender’s Game. Setting aside both my memories of the book and my feelings about OSC, it was a pretty good movie. A lot of the plot was forced, but then, that was kind of the point. With occasional clicks of the pause button for discussion, [info]the_child understood how Ender’s entire existence was being managed by deception and manipulation. Since she’d never read the book, she didn’t know the stakes in the graduation battle sequence until Ender himself found out, and she very much shared his profound sense of anguish and betrayal. I’m not sure I would have enjoyed this film so much if I had not been watching with a teen aged viewer, but I did. Afterwards, when we were talking about Ender and the adults in his life, and the Formics, I was able to explain that the man who wrote that book so full of human understanding and real pain had long since turned into a very sad, vile person who worked very hard to do evil to many other people. She opined that OSC’s personal story was sort of like Ender’s story, which I thought was a fascinating insight.

Maybe today I’ll watch cartoons.

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[personal] Five things make a post, I think

Let’s see if I can count.

1) Dad, Lisa Costello and I are flying home this afternoon. This because NIH pushed back the start date of my immunotherapy by about three weeks from what we originally expected. I can’t really complain, as the reason for this is the genetic selection phase they added to the protocol in order to leverage my Whole Genome Sequencing data and optimize the TIL cell infusion, but it adds another layer of financial cost and logistical complexity to the whole business. Frankly, instead of waiting here to start treatment, we’d have gone home two weeks ago if we’d understood the schedule. Such is personalized medicine in this age of miracle and wonders.

2) I am increasingly interested in seeing the The Lego Movieimdb ]. This film seems to fall into the category I call “movies which are much better than they have to be.” A good example of this is 2012’s ParaNormanimdb ], which was an animated kids’ comedy about a zombie attack on a New England town. But it had a clever, well thought out script with an ending far more humane than one would ever expect from a zombie movie, which made watching ParaNorman a much more rewarding experience than one would ever expect from the film’s subject matter, genre or marketing. So perhaps with Lego. Maybe this week.

3) The persistent pain knot in my chest has faded a bit. I have recently started taking gabapentin for it. I’m not sure if the connection is causal, as gabapentin has a titration period before it becomes effective. In reading up on gabapentin, I discovered that it can be recreationally abused. Which amazed me. I guess people really will try anything.

4) I have been trying to compose a post about Kansas House Bill 2453, which is a profoundly senseless, cruel effort to enshrine wholesale persecution of gay and lesbian citizens into law, masquerading as a defense of religious freedom. I just can’t figure out what to say that doesn’t make me sound so shrill and angry that I can’t even stand to read it myself. This is the apotheosis of the Republican religious-conservative axis into Poe’s Law, in which their extremism has transcended even self-parody. I have only one question for the religious conservatives of Kansas: “Would you do as you would be done by?” Sadly, we already know the answer to that one.

5) After that number four, I don’t have the heart for a fifth. I guess I can’t count.

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[cancer] Slipping over the horizon

Lately, I feel as if I’m dissolving.

This morning, I recalled the plot of a story, and couldn’t remember if I’d written it, or read it as someone else’s work. (I still don’t know, as of this writing.) That’s literally the first time I’ve ever done that. I used to be able to recount the title and plot of every story I’d ever published, hundreds, but it’s been a long time since I had even that much grasp on my own memory. But this type of confusion? This was new.

Also this morning, my liver pain is back. I suspect it’s never left me, but has been subsumed into the surgical recovery process and that nagging knot of pain in my rib. I suppose in a sense this is a good thing, as it means that the other pains have receded enough for me to notice the difference.

This entire week, I have been off. Substantially fatigued, easily further tired by much activity, mentally vague much of the time. Uncharacteristically petty of emotion and quick of temper, though I’ve mostly managed to keep my trap shut at those little surges. There’s the small, persistent cough. There’s the rib pain. There’s the declining appetite. Both Lisa Costello and Dad have been worried about me.

Every bit of this is reasonably consistent with the intersection of post-operative recovery and me entering my terminal decline with the advance of my cancer. Like I said, I feel as if I’m dissolving. Bits of me are growing weaker and thinner, or vanishing altogether.

This is what dying means from the inside. Not some big, dramatic personal Götterdämmerung. Not some noble, long-suffering, Hallmark Movie of the Week struggle complete with sappy occasional music to cue the tears. Just a slow dissolution, slipping over the horizon. A quietly frustrating fade to black.

I dissolve, wishing it were otherwise.

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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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[personal|culture] Valentine’s Day

I was one of those kids in grade school and junior high for whom Valentine’s Day was a torture. You know, getting the “pity Valentine”, or one from the teacher but none from the students. Almost always the new kid who’d just come in to the class, socially and physically awkward, mouthy, too smart and not wise enough to hide it. So this is a holiday that’s never pleased me much, because it always seemed to be as much about exclusion as inclusion.

That being said, as an adult, I’m glad there’s a celebration of romance for those people who have romance in their lives. Hooray for love, right?

But romantic love isn’t binary, and romantic love isn’t exclusive, and romantic love isn’t as simple or enduring or fulfilling as almost all our cultural reinforcement would have us believe. Even at its best, romantic love is complicated stuff, and it is hard work. All the more so if you don’t fit the mold.

In truth, who does fit the mold?

I know the desperation of fading hope, and I know the fulfillment of a well cared-for heart. Especially these days, thanks to Lisa Costello, who stands by me in the face of overwhelming adversity.

But really? Love yourself today. Remind yourself that in taking care of you, first, you make yourself available to any partners, current or prospective, to your kids and pets if you have them in your life, to the world as a whole. We all ought to send ourselves hearts and flowers first. Then we’ll be ready to love one another.

From the kid in the corner being giggled at behind the hands of the rest of the class, you are not alone. And it can be better.

Happy Valentine’s Day, whatever that means to you.

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[cancer] Slow day yesterday, always worrying

I had a lot of minor issues yesterday. In sum, I was lethargic, exhausted and very hard put to tolerate much physical or mental activity. Also, the pain in my chest was subjectively worse than previous days.

Both Lisa Costello and I worry about me sliding. The slide is inevitable, but we still worry. Not sure if yesterday was me still recovering from Monday’s expedition into DC, or post-operative recovery making its demands known more loudly, or terminal decline sneaking up on me, or the previous night’s bad sleep thanks to my shouty hotel neighbors. Likely all four.

It’s a hell of a life where every sleepy day quite legitimately feels like a harbinger of death.

Right now, there’s a foot of snow on the ground from overnight snowfall and at least twelve hours more snow expected. So we’re low and slow this day as well.

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[cancer] A bit more detail on my oncological hypochondria

I’ve mentioned numerous times enjoying what I sarcastically refer to as “oncological hypochondria”. Meaning, experiencing every somatic change or irregularity in my body as if it were a sign of impending trouble on the cancer front.

This is less of a joke than it used to be, given that I am probably entering my terminal decline right now. It used to be that when I had a problem, I wondered if that meant the cancer was returning. Not so much any more. The disease is back with a pervasive, terminal vengeance. Now when I have a problem, I wonder if that means a step in my irreversible slide toward death.

Specific things that are going on right now:

Oversleeping — I am sleeping more than I used to. That’s normal for any post-operative patient, and I am recently post-operative. It’s also one of the specific markers of terminal decline, at least given my most likely failure modes. I cannot judge whether the oversleeping is one, the other or both.

Reduced energy — For example, Lisa Costello and I yesterday took the Metro from Rockville to DC to have lunch with her Day Jobbe workgroup, which is based in downtown DC. Two forty-five minute Metro rides and twenty minutes of walking back and forth in the cold absolutely wiped me out physically and mentally for the rest of the day. As with the oversleeping, this could be a post-operative issue, or a harbinger of terminal decline, or both.

Kennel cough — I’ve got a very odd little cough these days. It’s not connected to a sore throat, post-nasal drip, or any sign of impending infection. I just cough, a tiny, little apologetic thing like a baby’s cough, that often comes in pairs. My best guess is that I am producing more saliva than I used to, and it’s draining into the back of my throat. What the hell does this mean? I don’t know. Cue more worry.

Chest pain — Ok, let’s get real. I had a right thoracotomy less than three weeks ago. Of course I have chest pain. But the pain has settled in a spot below and to the left of my right pectoral. Which was in no way directly affected by the surgery. Likely this is a knot of referred pain, perhaps the trunk end of the nerve on that rib, but it’s persistent and annoying, and seems to be happily outlasting the receding pain from the surgery site itself. (Sites, actually, since I had VATS surgery, meaning there are five small but distinct entry and exit wounds.) What does that mean?

Appetite — My appetite continues irregular. I eat a very modest breakfast, tend to eat a full lunch or close to it, and eat a very modest dinner. I’m pretty sure my calorie intake is below target now, though we don’t have a scale in the hotel, so I can’t track any weight swings, which for me based on experience are known to be a pretty good proxy for calorie intake. Like extended sleep hours and daytime lassitude, reduced appetite and weight loss are symptoms I’ve been told to expect in the process of terminal decline.

In a sense, this is all dithering. I’m dying. That is a thing which is true. What we’re up to here at NIH might buy me some time, maybe months, maybe a year, though more likely not. It won’t cure me. My body is under assault from within, and at some point this endless stubbornness of mine that has kept me going will collapse under that assault. Still, I watch the signs, wondering which twinges are just middle age and hard use, and which twinges are glaring idiot lights on my personal dashboard of death.

Weirdly, some days I just want to get on with the business of it. So, weirdly, some days I almost hope for the worst.

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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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[photos] The view outside my hotel window

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I quote Lisa Costello from her — “The air smells like ocean and the beach has snow on it, with little seagull footprints.”

Photo © 2014, Joseph E. Lake, Jr.

Creative Commons License

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] One of the perils of hotel living

We’ve been living in the Best Western in Rockville, MD lately, though in fact today Lisa Costello and I are decamping for Ocean City, MD for a quiet week before plunging back into the busy-ness of NIH and my clinical trial. But given my career of the past fifteen years or so (both Day Jobbe and writing, come to think of it), I’ve spent probably 1,500 or 2,000 nights in hotels in that time. I’ve experienced almost everything you might expect to in that time.

This morning one of the perils of hotel living was brought back to me in force. At 5:30 am on a Saturday, the alarm in the room next door went off at full volume. A series of beeps, followed by the jangle of a radio not quite tuned in properly. Loud enough to wake me from a these-days-rare sound sleep. After a couple of minutes, I got up and investigated. It was even louder in the hall.

Sometimes people check out and leave the alarm turned on. So I called down to the front desk and got no answer. I got dressed and took myself down to the lobby, where I found the night clerk and spoke to him. He said someone was checked in to the room next door. A few minutes later, heard loud knocking.

That damned alarm blared from 5:30 to 6:12 before cutting out. Later, when I went down to breakfast, I could still hear the radio through my neighbor’s door, though it was no longer blasting through the wall between us.

Hearing impaired? Ill? So drunk they couldn’t react to their alarm? Anti-social idiot? I’ll never know.

But yeah, this is the glamor.

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