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[cancer] Which way am I going?

Just had another slo-mo meltdown with the gracious Lisa. I am having a very hard time.

Part of the problem right now is we can’t tell which direction I’m going in. Most of my current health issues (other than the food, which is both dominant and a special case of conditioning and attempts at deconditioning) could point to either me slipping further into my terminal decline, or to me responding to the recent experimental immunotherapy protocol. Or both. And we won’t know for sure until mid-May, though it’s possible negative evidence will emerge in my consultations on 4/14 and 4/15.

So, yeah. Am I living or dying? What does all this exhaustion mean? How tired can one human being be?

Hence the lack of blogging and email. Fragile hope is under great duress, and my energy levels are similar to late chemo after six months of treatment. And we just don’t know…

[cancer] NIH Day 10

Getting overwhelmed fast here. Yesterday was busy and spoon-burning both. An hour of deep science talk with Dr. Tranh about how the genetic selection of my TIL cells was done, and why, was sort of like a Masters degree in a bottle. I will report that when I can. (Notes were taken.) A 75-minute EMDR session to deal with my aggressive emergent food aversion gifted unto me by the cyclophosphamide. Likewise to be described. The massage therapist turning up. And the intensity of treatment dialing up sharply last night, half a day ahead of what I had expected.

Oddly, I got a good nights sleep.

The dance begins in earnest at noon today, with the TIL cell infusion. I do not expect to be able to blog or function on social media effectively after today for a while. I will either be silent, or possibly have Lisa make posts if need be. Expect erratic posting until further notice.

Overwhelming.

[cancer] NIH Day Seven

I am now in my seventh day here. (Eighth? Not sure where the count begins.) I’m still a bit addled from the Cyclophosphamide dosages over the weekend. (Just typing the name makes me feel ill, via the mighty power of suggestion. And I am still retching horribly from time to time.) But it’s pulling together. I had a good night’s sleep, albeit somewhat interrupted. Today through Friday they;re dosing me with Fludarabine, which is considerably less ugly. Friday or Saturday I start IL-2, which will probably be the toughest med I’ll ever encounter. I am more than a little afraid. In fact, I am very afraid.

I’ve made some observations here, which I offer in no particular order except that the one with the somewhat triggery and gross medical photograph will be under a cut at the end,

Toilets in the patient rooms

Whatever healthcare architect specified the toilets in the patient rooms here had obviously never used one. They’re the kind that stick out from the wall, and oval of the seat is longer that the usual American toilet design. And they have a very high waterline. Like so:

NIH toilet

Note the red line. Think about it for a minute. Lisa Costello says when she uses the one in the visitor bathroom, she often gives herself a finger bath whilst cleaning. Me, I dangle. As most men due to some degree. Little Elvis is of a felicitous size and shape, but my cremasteric reflex is in good working order, so he’s usually safe. However, my testicles drop right into the soup every time.

I’m sure I don’t have to draw you (another) picture. Let’s just say my management strategies for this are annoyingly kindergarten-like, as I’m not normally in the habit of clutching my junk while I poop.

Why in the hell anyone thought this was a good design, I cannot imagine.

How best to pee in a handheld urinal (if you’re me)

I have discovered that the best way for me to pee in one of those little plastic urinals is to lean my forehand against the bathroom wall, tilting my weight forward, and use my two hands as God intended them to be used in that situation. I have no idea why this should be true.

Hot water? In a hospital? What hot water?

As long as we’re on the subject of plumbing design in a healthcare facility, the hot water at the tap is very, very slow. If it hasn’t been used for a while, I’m talking two-rounds-of-Happy-Birthday slow. I understand instant-on hot water isn’t practical from an energy efficiency point of view, but maybe they could have put a few more boilers in the architecture. I mean, it’s not like I have any reasons to need to keep washing my hands a lot.

The saga of my hospital bed

Oh, the bed. It’s a perfectly good bed. All the mechanical bits work just fine. Up, down, et cetera. But the light controls and nurse call built into the flip-up side panels did not. I asked about this on checking in. “Just use the remote”, I was told. The remote, btw, provides no visual feedback such as an orange light or something when you press the nurse call. I pointed out this was a significant safety hazard, because if I awoke confused or seizing or something, the side panel nurse call was much more obvious and easy to reach, and I might night be able to hunt for the remote. A non-functioning emergency call button is a hazard, period. “Loop the remote around the side rail.”

I’m sure Risk Management would love to hear all that.

So we kept asking. And asking. Nurses, doctors, maintenance guys, the ward administrator. The problem, it quickly devolved, was the bed’s data output cable had a head that was incompatible with the data input on the utility wall behind the bed. We asked for another bed. No.

The problem with being in a hospital is that if you’re trying to accomplish something that doesn’t flow up through your nurse to your doctor, that’s very hard to do. Administration, infrastructure, physical plant and so forth are deliberately invisible to the patients.

Finally a guy came in to change our clock battery for DST. He was a hospital electrician. We asked him about the bed. No, not his job, but he knew who’s job it was. Meanwhile, I think the ward admin had finally gotten hold of someone. (Bed services apparently not being available over the weekend.) The bed mechanic showed up in due course, agreed with our diagnosis, and said he’d fix it. He came back half an hour later with a cart full of tools and equipment and tore apart the utility wall to swap out the bed data interface.

All ended well. But we must have asked literally fifteen people. It was just weird.

My footlight

Speaking of physical plant, there’s a small footlight in my room next to the bathroom door. I suppose it’s intended for night use. It’s inside the wall, and provides a corresponding glow on the other side. Except the filter or whatever on my side has slipped. So when I turn the footlight on, it shines directly in my eyes in bed with an unmediated glow of a bulb. I have asked to have this fixed as many times as I’ve asked for the bed to be fixed, but we haven’t yet found the vice-president of footlights at NIH, apparently.

Little roly-poly bits on the floor

I am attended by two nurses per day on 12-hour shifts. The odd medical assistant wanders through to do vitals. Episodically doctors appear like Canadian trap door alligators. And they leave behind a trail of syringe caps and similar small plastic items on the floor. I find this an astonishing fall hazard, as small round things may as well be ball bearings if you hit them at just the appropriate angle. Another item for Risk Management I guess.

Using the incentive spirometer to bring down a fever

One of my least favorite medical devices in the incentive spirometer. They feature prominently in post-operative recovery regimes.

incentive_spirometer

I have learned a new use for them which surprised me considerably. If I measure a low to moderate fever, the nurses here will sometimes have me use the incentive spirometer for several minutes. It can bring my temperature down by a degree Centigrade or more. Weird.

The fifteen-minute Tylenol

Yesterday, NIH implemented a new medication management system. Literally every pill or dosage has to be scanned before it can go into me. This has obvious applications for both patient care and inventory control. It’s also, like all new release software, buggy and strange.

Last night, my nurse was trying to give me 650 mg of Tylenol. For some reason, my orders were written as two separate 325 mg doses. This resulted in fifteen minutes of exasperated effort on her part, and that of another nurse, before they just gave me the damn Tylenol and went off to work this out somewhere else. Given that I was on the edge of falling asleep at the time, and really wanted the Tylenol so I could go lights out, this was frustrating as all get out. Ah, progress.

My inoperative lungs

The bottom third of my lungs are silent now. I no longer have use of them. The tumors have crowded out the healthy tissue and blocked air access. So when a doctor or nurse listens to my lungs, they sometimes comment on this. I am always on the edge of short of breath, and find this somewhere between creepy and terrifying.

The twisted pair inside my chest

Astute readers will recall that last week I had a dual-lumen Hickman catheter installed in my left chest by Interventional Radiology. It hasn’t worked worth a damn since.

image

Inputs are fine. They can pump stuff down all day long. And if they’re pumping down, they can extract. But right now I’m only on the infuser about 30 minutes per day. And after a while, output shuts down. No blood draws. Apparently I either have excellent clotting factors, or the lines are twisted in my chest and pinching one another. The horrible, whole-body spasms I’ve been having with the wrenching and coughing can’t be helping that either. Right now I’m waiting out a TPA push to see if that clears. Otherwise I’m afraid they’re going to put me on KVO (Keep Vein Open) orders with a continuous drip. My real terror here is that they’ll decide to take this out and put another one in.

Meh.


Images copyright their respective holders.

[cancer] NIH Day Six

It’s Monday morning here at scenic NIH. I haven’t eaten anything since Friday afternoon but two soda crackers, of which I thrwe up. My dreams have been filled with strange chowder, including the realization that I own a Black Knight pinball machine. In point of fact, I do not, though I’ve long coveted them. They’re spendy to buy and spendy to maintain and where would I put one anyway?

They started me Friday afternoon on Cyclophosphamide as my first stage chemo agent. My mind and body both went to tell. Since then the longest stretch of sleep I’ve had is about three hours, and my total across three nights is ridiculously low. Plus all the usual stuff like diarrhea and vomiting. Uncontrollable in my case, which is unusual. Plus some unusual (for me at least) stuff like all 32 of my teeth aching at once, and my face browning hot to the touch.

I’ve run a series of low grade fevers. The chest port they put it keeps clogging. One of my nurses believes the lines are twisted inside of mu chest. Some of the vomiting was so severe that afterwards my forearms ached for an hour so, something I’ve never experienced. Dad, [info]tillyjane (a/k/a my mom) and Lisa Costello have been magnificent.

I have been magnificently miserable.

Things are a bit better today. The chemo I’m on until Friday, the name of which escapes my right now, is much more narrowly targeted and shouldn’t leave me feeling so oppressed. I need to lose the Cyclophosphamide-induced gag reflex before I resume eating, but hopefully that will be today.

When I start the IL-2 on Friday or Saturday in order to supplement the TIL cell infusion, I’ve been told to expect a weight gain of 20-30 pounds in less than a handful of days. It can do weird things to your metabolism. I’m also told I’ll lose that weight before they discharge me, presumably by pissing it away, but wow… That also puts me in mind of ascites, which I expect to be a feature of my terminal decline.

Meanwhile, I suffer for science. Please excuse any weird mistakes in this blog post, my brain is not fully back on line yet.

[cancer|personal] My first day at NIH

Well, this has been a doozie. The flight yesterday was reasonable, and I set alarms to remind me to get up and walk every 30 minutes. This kept me from stiffening up. On arrival, after some delays on the tarmac, I was re-united with Lisa Costello. We went to dinner, then she brought me to the NIH hospital in Bethesda, MD.

I was late checking in, due to the travel schedule, and it took a while to get settled. Then around 10 pm they wanted a chest x-ray. Then an EKG. Then a urine sample. Then a blood sample or twelve. There was a small comedy of errors around trying to set a needle in my chest port. All in all, I did not go lights out until 12:30 am, which even by West Coast time is quite late for me. I slept very poorly, awakening around 5:20 to eat half a granola bar, as I’m NPO from 6 am on due to a forthcoming CT scan.

There’s been the usual cycle of doctors, nurses, dietitians and whatnot flowing through here this morning. The critical conversation was with Dr. Klemen. My white blood cell count is quite elevated, 15 on a scale where 10-11 is the top of the norms. My neutrophils are up as well. This is evidence of infection, which he believes is linked to my cough. Unfortunately, if we can’t get my white count down in the next day or so, I am at strong risk of washing out of the trial completely.

They simply cannot go in and flatline my immune system while I have an active infection. That could kill me. And the TIL cell growth is timed. I have to start that infusion within a pretty narrow window.

We’re hoping the white cell count is already dropping. They’ll be reviewing this morning’s CT for evidence of lung inflammation hopefully on the retreat. But as Dr. Klemen says, whatever I’m fighting, unless it’s already on its way out right now, we can’t suppress it fast enough to meet the deadlines.

So, yeah. Here we are, in March, on the journey that started last fall, and we may be looking at a wash out.

I cannot even begin to describe the bitterness I would feel at that disappointment.

We shall see what happens today and tomorrow.

[links] Link salad wakes up in a strange place

Another game of putting things aside, as if we’ll come back to them sometimeLisa Costello on living with my death.

Small fortune: Why everyone should give short stories a chance — (Via [info]willyumtx.)

How the Grinch Stole Grammar!

14 World-Changing Data Visualizations, From the Last 4 Centuries — Which reminds me of Charles Minard’s flow map of Napoleon’s march on Moscow. (Via David Goldman.)

When Trilobites Ruled the World — (Via Dad.)

A Successor to Sagan Reboots ‘Cosmos’ — This is cool. An incredible shame that it’s on FOX, the conservative propaganda organ. (Via Dad.)

Christians, authors debate role of submissive wife — It so very hard for me to interpret this as anything but creepy as hell.

Gay marriage opponents don’t know they’re on the wrong side of public opinionAccording to a new survey by the Public Religion Research Institute, only 41 percent of Americans oppose allowing same-sex couples to marry. But that same 41 percent has a highly skewed perception of where the rest of the country stands: nearly two-thirds of same-sex marriage opponents erroneously think most Americans agree with them. I’m pretty sure this is true of most conservative positions: unpopular, often deeply, when polled among the population as a whole (i.e., including people other than likely Republican voters), but not understood as such by conservatives, who imagine themselves to be the brave vanguards of a still-silent majority.

GOP’s “inane” war on science: Plasma physicist congressman takes on the denialists Holt, a plasma physicist and eight-term congressman (and five-time “Jeopardy!” champion), last month announced he’ll leave the House in January. For “future generations, who will pay an even greater price than the current generation from climate change,” Holt told Salon late last week, “it will be hard to explain to them the inaction of America and the U.S. Congress.” (Via [info]shsilver.)

Obama’s Critics Should Put Up or Shut UpDo you remember when President Bush’s political adversaries starting ragging on him during the first days after 9/11? Or during the first days of the invasion of Iraq? Me neither. Whatever you think of the holder of the presidential office, if you are actually concerned about the nation’s welfare you don’t go on TV mocking him and saying he’s weak.

?otD: Can you sleep alone? Can you sleep with somebody else?


3/5/2014
Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 6.0 hours (very fitful)
Body movement: 0 minutes (hall walking to come)
Weight: n/a (no scale here)
Number of FEMA troops on my block teaching wives how to be submissive: 0
Currently reading: n/a (chemo brain)

[personal|travel] Five things make a post for a flying day

Five things make a post. Or something. #blogworldproblems, I guess. Let’s see…

1) I am heading for the airport shortly to fly to DCA. There, Lisa Costello will pick me up, take me to dinner, then take me to NIH to check into their inpatient unit, pretty much for the month of March. The flight’s probably going to suck because of all the cancellations yesterday, which means severe overbooking today.

2) I continue to fear washing out of the trial at the last minute. My drop in baseline health these past 3-4 weeks concerns me. I have a tender lumpiness in my right side which I’m afraid is a result of the known rapid growth in my liver tumors displacing enough tissue to be detectable by touch. And this damned cough…

3) On a more-or-less unrelated note, I’d hoped to make a post this morning about atheist errors-of-thought, especially where it concerns the fungibility of faith. Or more to the point, lack of fungibility of faith. This is in part in response to [info]ericjamesstone‘s thoughtful essay And we will prove them herewith… in which he talks about (among other things) conforming to church doctrine with which he does not personally agree. He sees this as a test of faith (if I may simplify a bit), while I see this as evidence he’s in the wrong church. I’m pretty sure my reaction is simplistic bordering on insulting, and I wanted to analyze that in compassionate and respectful terms. But not this morning, it seems.

4) My dreams of late have been more and more chowder, less and less linear. I don’t believe my brain is decaying that fast (not an ordinary symptom of my kind of cancer, though intracranial metastases are a slight possibility), so I’m pretty sure my subconscious is working on a project. When it deigns to send me a coherent postcard, I’ll pass the word.

5) On a topic somewhat less to my own credit, I find lately that old hurts have been resurfacing in my thoughts. There’s precious little point to that, and it’s not the least bit constructive, but here I am. Like the chowdered dreams, my mind is trying to put things in order. I’ve gone through life not making enemies, though a few people have certainly gone out of their way to make me their enemy regardless of my actual words and deeds. But in this case I’m talking more about the usual hurts of life, lost friendships and fractured loves and “whatever happened to…” moments. Really, I don’t need these trips down memory lane amidst everything else that’s going on.

[radiantlisa|travel] She’s leaving on a jet plane

Mother of the Child and I are off shortly to take Lisa Costello to the airport. She’s flying to Maryland today, to avoid a weekday flight next week, and because we had to plan her trip before we knew my confirmed dates. She’ll pick me up at the airport next Tuesday and take me straight to NIH. I shall miss her effervescent company this weekend, but I understand she’ll be visiting with old friends tomorrow, so perhaps constructive distractions will be in play.

Still, I wish we were flying together.

[personal] To sleep, perchance to dream; aye, there’s the rub

Most of my life I have been a champion sleeper. Even these days, given the various medications and the healing efforts of my body in decay, I most nights sleep well and deeply.

In my time, I have slept in bathtubs. I have slept on the bare metal of a pick-up bed. I have slept on dirt. I have slept in cars, buses, trains, boats, ships and airplanes. I have slept through parties and all manner of racket. I have slept through earthquakes. I have slept through a Category 3 hurricane on the Texas Gulf Coast and I don’t know how many Pacific typhoons. I have slept through a four-alarm fire in my own college dorm building.

Last night, I could not sleep through Lisa Costello‘s snoring. It was the loudest sound I have ever heard a sleeping human being make. And I am a man who raised a super-powered toddler. I could not even by dint of noble effort imitate or reproduce this sound. If normal snoring can be likened to sawing wood, this was Godzilla tearing apart the lumberyard and being pissed about the splinters.

The thunderous racket entered my dreams twice before fully waking me, at which point I lay in the dark, amazed. All it took to calm the Stentorian flood of sound was a gentle poke. She shifted, snuffled once or twice, and continued to sleep.

I only wish I’d though to fire up the decibel meter on my iPhone.


P.S. – Yes, I have Lisa’s permission to make this post and publicly discuss her sonic shame.

[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.

[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.