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[personal] I feel like Bill Heck

And believe me, Bill Heck is a distinct improvement over William Hell.

I laid very low yesterday, and I took the heavy artillery to help me sleep long and hard last night. Today the pain knot in my chest is complaining, but as of late, that’s normal. I still feel an overwhelming fatigue. Most of the rest of yesterday’s somatic complainants have quieted down.

Clearly I have no resilience these days. Not sure if that’s the long-term new normal, or part of the surgical recovery arc. Given the continuing advance of my dozens of metastatic tumors, I tend to assume this is another permanent loss of functionality as I continue in my terminal decline.

At any rate, in relative terms, I do feel better. In absolute terms, meh.

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[personal] I feel like William Hell

Guess what? Sitting bolt upright (in a non-reclining airline seat) for six hours yesterday, and staying up three hours past my bed time (thanks to the time zone boogie) has done absolutely nothing for my sense of well being.

I feel like I fell down the stairs or something. The pain knot in my rib has returned with a vengeance. The occasional shadow pain knot in my back is expressing itself vigorously. My surgery wounds sting and itch. Sleep last night was like playing Whac-a-Mole with the pain fairy.

So yeah. Laying low under a quilt in my fancy adjustable recliner with the massage pad and the heating pad, trying not to feel sorry for myself.

And may I say, “Ow.”

P.S. – Sorry for the whining. This is kind of overwhelming.

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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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[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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[personal] Continuing to lay low

I had been thinking about driving down to Wallops Island today to visit NASA’s Wallops Flight Facility, as well as the co-located Mid-Atlantic Regional Spaceport, because, hey, MARS. But my right chest still aches enough to be distracting as well as serving as an impediment to my full range of motion. This probably means I should not be operating a motor vehicle.

Plus it’s cold and gloomy out there.

Tomorrow, if I feel up to it, I shall go. We’re pulling up stakes Saturday morning and heading back to Rockville to be ready for the next round of healthcare festivities at NIH, so if I don’t make it tomorrow, I shan’t make it at all.

In any event, I am laying low today. My ambitions have been scaled back to eating meals and maybe a walk on the beach.

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[personal] The things I did yesterday

I slept in.

I watched the beach out of the windows of our hotel room.

I had the last stitches from my thoracic surgery removed at an urgent care facility here in Ocean City. (Ouch.) Some pleasantly unexpected personal kindnesses were exchanged.

Lisa Costello and evacuated our room when the hotel alarms went off, slogging through the near-freezing, blowing sideways rain to reach the lobby rather than walk through the building. There we spent twenty minutes or so chatting with the day manager whilst emergency responders tramped around the hotel verifying that it was a false alarm.

I re-read some C.J. Cherryh. I’m still not doing well with new material, but I’m able to reread old material which appeals to me.

We had a truly excellent calzone for dinner at Pizza Tugos.

How was your day?

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[personal] Happy Birthday to Mother of the Child, with bonus sports snark

Today is Mother of the Child’s birthday. She does not have a social media presence, so I mention it here to wish her well and happiness.

I believe there may also be a significant-to-some-people sporting event somewhere today in honor of her birthday. I wish the contestants well with the same majestic indifference both Mother of the Child and I have always applied to all sporting events not involving [info]the_child herself on the field of play.

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[photos] Still in the hospital

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Me in the ICU yesterday, photo by Dad

Some minor complications involving chest drainage and lung function. Nothing to worry about, just stuff to work through, And I am soooooo tired. So this is all the blog there is today.

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[personal] A note on the blogging calendar this week and next

As I am having thoracic surgery this coming Thursday, January 23rd, I do not expect to be blogging for several days. Lisa Costello will have the keys to the blog, and be updating when and as she can. Also, watch her Facebook wall for latest and most frequent updates.

Even when I do resume blogging, depending on the arc of my surgical recovery, it may be a while before my usual daily posting schedule is back in place.

Meanwhile, I am flying to the Washington area tomorrow morning, and will be admitted to the NIH inpatient facility for pre-operative care tomorrow evening.

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[personal] Home, home again; I like to be here when I can

Back from Maryland and NIH. Long travel day yesterday, with several odd-but-minor twists. Nonetheless we made it.

I am laying very low this week to try to maintain my everyday health. If I come down with a cold or infection, the surgery will be postponed. Grr.

Now, to keep quiet and warm.

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