More thoughts on jumping out of an airplane

I’ve done this twice now and, again, cannot recommend it highly enough. There is no way to adequately convey what it’s like. Which is why I’m going to half-ass trying to explain exactly that.

Your cerebral cortex, what us medical professionals refer to as “the wrinkly part of your brain” understands parachutes, at least on a general level. Not in any exact detail necessarily but in broad strokes. It also has at least some impression of their record for safety and reliability. It understands that humans are tool-using animals and that we can greatly extend our capabilities through technology.

Your cerebellum, known to medical professionals as “the lumpy bit near the base of the skull”, doesn’t understand any of that. The cerebellum hasn’t had a major update to its operating system in probably 100,000 years. The cerebellum is mostly in charge of your autonomic nervous system, the part of your nervous system that controls things like the fight-or-flight response. It’s still on the lookout for sabre-tooth tigers and hasn’t really figured out any other way to see the world.

So there you are up in an airplane, which is kind of throwing the cerebellum off a little already, and then you’re going to do something that, as far as your cerebellum is concerned, will be absolutely, 100% assured fatal. This tends to cause a certain amount of unease.

Then, of course, the parachute opens and you float safely back down to earth.

Now remember, as far as your cerebellum was concerned, ten minutes ago you did something that should have, without any doubt or question, caused your demise. It was as certain as night following day that you were going to die. No avoiding it, no other possible outcome.

And then you don’t die. And not only that, you’re not even hurt!

Just imagine how confused that must make your cerebellum. Here is this thing that hasn’t learned much of anything new for the last 100 centuries and something just happened that it has absolutely no way of explaining.

Anyway, it’s kind of like that.

Treatment #3

Once again, the process itself was completely unremarkable. I asked the treatment nurse about side effects, specifically fatigue, and whether or not what I was experiencing was out of proportion or beyond what was expected. She observed that the overwhelming majority of people that she gives BCG treatments to are past retirement age or otherwise not working and they still complain about fatigue.

I am absolutely willing to acknowledge, what with everything else I’ve had going on over the last 18-24 months, that the lack of energy I’ve been experiencing may not be entirely the result of the BCG. There are certainly other factors that could all be coming together to make me feel like I have been feeling. That said, I’m sure the BCG isn’t helping.

I’ll see how this week goes but I may very well look in to going on light duty for at least the duration of my remaining weekly treatments.

It’s been an off day

 Gaze as much as he might, he could see no end to the trees and the leaves in any direction. His heart, that had been lightened by the sight of the sun and the feel of the wind, sank back into his toes. 

Actually, as I have told you, they were not far off the edge of the forest; and if Bilbo had had the sense to see it, the tree that he had climbed, though it was tall in itself, was standing near the bottom of a wide valley, so that from its top the trees seemed to swell up all round like the edges of a great bowl, and he could not expect to see how far the forest lasted.

Still he did not see this, and he climbed down full of despair. He got to the bottom again at last, scratched, hot, and miserable, and he could not see anything in the gloom below when he got there

The Hobbit by J.R.R. Tolkien

I have used this passage before to describe a bit of how I feel on my off days, not necessarily cancer related specifically, but in general. Intellectually I know that nothing I’m going through right now is going to last forever but sometimes it is very difficult to see the end.

I think some of this is connected to the disparity between how much I need to do and how much I feel like I can do. I have no doubt that I could be doing more than I’m doing now in terms of maintaining the house, making progress in school, showing up for work, etc. if I just pushed myself a little harder. The question that I can’t settle in my mind is how hard do I need to push myself? How hard SHOULD I push myself.

There are two extremes; I could do nothing and just let everything fall apart or I could keep pushing myself to do everything until I collapse. Neither of those are good options but I’m not sure where the balance is. There is a big part of my brain that tells me I’m malingering or being lazy whenever I leave something undone to sit and rest for a while which is useful to a point, I suppose, but it doesn’t seem to have an off-switch. It’s hard to get a handle on what is a reasonable level of activity when that part of my brain is likely never going to be happy no matter how much I do. If it was a voice of encouragement it wouldn’t be that bad; “you’ve got this, keep going, you’re doing amazing, don’t stop” but instead I just have this constant drone about how lazy I’m being and how much time I’m wasting that could be put to better use.

My brain is not particularly helpful a lot of the time.

Catchy Title

I was profoundly unconscious for about four hours there. One of those times when you’re so far out that when you wake up you don’t even know what day it is. Anyway, that happened and it helped a great deal.

I was going to expound on some trivial matter or other but instead I think I’ll go pass out again.

Laziness – Preliminary Results

When you have insomnia, you’re never really asleep, and you’re never really awake. With insomnia, nothing’s real. Everything is far away. Everything is a copy of a copy of a copy

Fight Club by Chuck Palahniuk

Edited to add – Was unpleasantly awake and restless, now back to being so exhausted my eyes are crossing. In the space of about two hours I’ve hit polar opposites.

This is really strange.

Treatment #2

The second treatment went very much the same as the first, minus the annoyance of driving and trying to park downtown since I was very kindly given a ride to and from so I wouldn’t have to deal with it.

I absolutely have been more fatigued than usual over the last few days but I’m still not sure how much is medication side-effects and how much is life side-effects. Treatment nurse said it was very likely both. It’s certainly not debilitating, but is is getting annoying. I have a couple days off with not much to do except homework so I’m going to try an experiment, FOR SCIENCE! My hypothesis is that if I spend the next two days being profoundly lazy, my energy level will improve.

I will post the results after a rigorous statistical analysis of the data.

Edited to add – Yeah, this is definitely more than my typical fatigue. I feel like I could go to bed now and sleep until Thursday.

Also, I’m starting to get some of those urinary tract infection-like symptoms. Sitting quietly wasting time playing video games and all of a sudden YOW! GOTTA PEE!

Fun stuff.

Life’s Little Victories

Just so that this isn’t all doom and gloom, and also because I really do think it will be good for my mental health, I intend to sprinkle in a few of what gentleman cartoonist Keith Knight refers to as Life’s Little Victories.

My first entry in this category is something that genuinely made me do the full-on Keith Knight “YES!”.

Mashup artists The Kleptones have a new four part album called OV ER LO AD. It’s 135 tracks, clocks in at just over 8 hours and since I just found out about this a few minutes ago I haven’t had a chance to listen to it. However, The Kleptones double album Uptime/Downtime remains in the top three on my list of best mashup albums of all time (the other two being Girl Talk’s Feed the Animals and The Dirtchamber Sessions by The Prodigy) so I’m expecting great things.

Best part; you can download all four parts FO’ FREE!

OV

ER

LO

AD

Share and Enjoy.

Edited to add – I still haven’t listened to the whole thing but the first few tracks on OV are good. Like really good.

Seriously, Fuck Cancer

Disclaimer: This post will be mostly me venting. I’m not necessarily looking for solutions, assistance or even a response. This isn’t an indictment or condemnation of any person or anyone’s behavior, it is merely me shaking my fist futilely at the universe.

Something else I have struggled with since the beginning of this saga, before even I knew for sure what was going on or told anyone anything, is finding a way to express my general dissatisfaction with the world and my position in it without either sounding like I was blaming someone for something they did or didn’t or hadn’t done, or just sounding whiny.

This may also be connected to my nurse brain in a way. In my professional life people don’t generally tell me anything unless they want me to do something about it. In this way, physical medicine is quite different from mental health medicine. No one tells me that they’re having crushing chest pain because they want a sympathetic ear and a shoulder to cry on, they tell me so I’ll do something about it. There is certainly a component of compassionate and therapeutic listening to what I do (I hope anyway) but mostly I’m expected to actively try and intervene in some way that will improve the situation. This is, I think, a large part of why I didn’t really tell anyone that anything was going on; there wasn’t anything for anyone to do. I’ve had versions of the following conversation a couple of times now:

Me: Hey, turns out I have cancer

Friend or family member: Why the f(*# didn’t you say something before this?

Me: Why would I? There’s nothing you can do about it.

Friend or family member: [ExpressionlessFaceEmoji]

It took someone pointing out that I would very likely be kind of pissed off if the situation were reversed and it was one of my friends or family members that had cancer and hadn’t told me to get me to finally realize that people might actually want to know what is going on with me, even if there was nothing they could do about it.

[ArloGuthrie] But that’s not what I came to tell you about [/ArloGuthrie]

I feel like hammered shit today. I worked last night and, due to a combination of things that includes the unhelpful capriciousness of my brain, I haven’t really been able to sleep. Minus three or four hours of fitful dozing here and there I’ve been awake since around noon on Tuesday. I work again tonight (and tomorrow night) but I can’t really call out sick because I don’t have any sick time and I don’t want to miss a whole bunch of shifts this early in the process when it is very likely I will need the time off more in the coming weeks.

So I’m exhausted, dissatisfied with my job (this is a completely separate subject that is more complicated than will fit right now), I still have to go to work for the next two and there isn’t a whole lot that can be done about it.

This shit sucks.

cog·ni·tive dis·so·nance

/ˈkäɡnədiv ˈdisənəns/

noun

  1. the state of having inconsistent thoughts, beliefs, or attitudes, especially as relating to behavioral decisions and attitude change.

Something I have been struggling with since I started to suspect that I had cancer is the conflict between my nurse brain and my normal human brain.

As I’ve mentioned before, I’ve been a nurse for a little while now and, among other things, this has resulted in me having a pretty seriously skewed perspective on what qualifies as being “sick”.

I’ve talked about this before (with people in real life, not here obviously); the categories of “sick” and “not-sick” are useful in pre-hospital, emergency triage and intensive care settings to get a very quick idea of how much you have to worry about a patient. Ideally you should make an initial determination about sick or not-sick within the first few seconds of seeing a patient. These are not categories with strict inclusion criteria or even any objective meaning at all. It’s a very quick, very cursory assessment and can absolutely change as you get more information (the “sicker-than-I-thought” category).

For me, “sick” has come to mean a patient that is very likely to die in the next minutes to hours if you’re not watching very closely and frequently intervening to block their exit from this mortal coil.

“Not-sick” is everyone else.

Not-sick doesn’t mean that there is nothing wrong with a patient, it just means that there is nothing wrong with them that is going to kill them in the next 12 hours.

Astute readers may have already started to get an idea of the difficulty that I’ve been having with my brain on this one.

According to my nurse brain I am not even remotely sick. If I, as a nurse, was presented with me, as a patient, I would wonder why my time was being wasted with this. Right now, by any objective measure, I am solidly not-sick. My vital signs are fine, my lab work has only some very minor abnormalities, and I’m not having any particular physical symptoms. In short, what am I getting all twisted up about? I should just shut the fuck up and get back to work.

Simultaneously, my normal human brain is saying “well if having cancer isn’t worth getting twisted up about, what is?” and continues to tell my sympathetic nervous system that there is a major crisis going on and I should be hyper-alert and jittery all the time.

As is often the case (but absolutely not always, which is a different discussion) the truth is somewhere in the middle. Knowing that, though, doesn’t really make either side of my brain any more willing to calm down and play nice.