Tag: Brain

Brain Radio

A somewhat different impetus for this episode of brain radio, in that the song running through my head reminded me of an album that I had (almost inexplicably) forgotten about entirely.

For a few days I had a song by Laurie Anderson running through my head. I couldn’t remember the name of the song (it turned out to be Langue D’amour) so I went to my music library, sorted by artist, Laurie Anderson, and totally failed to find what I was looking for.

This was puzzling to me. I’ve been a fan of Laurie Anderson since I was in my early teens and I was reasonably sure I had all her music from the mid-‘80s to late-‘90s in my library. So I went to [$online_music_store] and my jaw dropped. I had totally forgotten about the album Mr. Heartbreak.

Somehow, at some point in the remote past, during a shuffle of data from one hard drive to another, Mr. Heartbreak fell out of my library without me noticing and it’s existence just slipped from my mind. The oddest are thing about the situation is that Mr. Heartbreak is still probably my favorite of Anderson’s studio albums.

The album was released in 1984, which was probably about the time I discovered it. Unfortunately I have absolutely no memory of how I got connected with Anderson’s music. I’m almost positive I didn’t hear it on the radio, although c. 1986 the song O Superman (For Massenet) from her first studio album Big Science did get a little airplay on the new wave station in Seattle (KJET 1590 AM). Anyway, the album has vocals by Peter Gabriel and (of course) William S. Burroughs in addition to Anderson and is about as mainstream as her material gets, in the sense of being considerably more accessible than, say, some of her spoken word/poetry performances with John Giorno. Which is sort of like saying an airport is more accessible than the high security areas of the Pentagon; the former you can get in to, but it takes work, whereas attempts to get in to the latter will, best case scenario, result in nothing but frustration and, worst case scenario, may result in serious head trauma. But I digress.

There is still a share of surreal imagery, experimental sounds, and examples of Anderson’s fascination with Bible stories and literature, but they’re hidden a little better. On some tracks anyway. The whole album is amazing, but this is the track that stuck in my head;

Okay, fine…

If you run into an asshole in the morning, you ran into an asshole. If you run into assholes all day, you’re the asshole.

Raylan Givens; Justified

Not saying I’m the asshole (not meaning to imply that I’m not the asshole either) but when different people are all independently telling you the same thing, you may want to pay attention to what they’re saying.

As mentioned in the previous post, nearly every person of significance in my life that I talked to about the question of whether or not to come off light duty said the same thing with surprisingly little variation. The common theme seemed to be a general concern that I was going to scramble my brain if I didn’t ease up on things a little.

I will certainly admit to having felt overwhelmed and overcommitted for most of the last three years or so, but I always assumed that was because my life was a disorganized mess and I couldn’t get my shit together. It is possible that I have been feeling overwhelmed and overcommitted because I actually have been overwhelmed and overcommitted. And then I got cancer.

The point to all this is that my primary care doctor gave me a note that appears to authorize light duty for me indefinitely and I may take advantage of that to stay on light duty until I actually feel better. As one particularly insightful person pointed out to me, I have obligations to my family that should carry at least as much weight as my obligation to work. It has been altogether too easy for me to forget that and I needed the reminder.

I’m still not sure what needs to happen before I feel like I’m ready to go back to work but I’m going to make an effort to find out rather than just going back whenever.

To return, or not to return…

As previously mentioned, I went and saw my primary care doctor on Friday. He didn’t really have any concrete ideas about the fatigue. He ordered a few basic blood tests to see if I’m anemic (I’m not), or hypothyroid (I’m not), or have any kind of unusual muscle damage (I don’t). In spite of that, he was somewhat equivocal on whether or not I should go back to work in the unit. He felt that I probably could go back to work but it would also be understandable if I stayed on light duty for a while longer, without a great deal of specificity on what “a while longer” might mean.

Being that I appear to be almost completely incapable of making this decision, and have been required to do so more times than I care to think about for school, I decided to make thing as complicated as possible and create an evidence table for whether or not I should go back to work. I’m leaving out any judgement on the quality of the evidence because I don’t think anyone I interact with on even a semi-regular basis has much to show in the way of an impact factor.

SOURCESUMMARY OF EVIDENCECONCLUSION
Friends and familyStay the f*** home, doofusStay on light duty
Critical care managementWe’d like to have you back but take whatever time you needIndeterminate, leans return to work
Employee health managementWe want you to get better of course, but we really need the helpIndeterminate, leans stay on light duty
Mental health providerYou’ve been through a great deal recently and there is nothing wrong with staying on light duty if you feel like you need toStay on light duty
UrologistNothing we did should be making you fatigued at this pointReturn to work
Primary care providerYou could go back to work, but you really are being treated for a legitimate medical issue so you can certainly stay on light duty if you need to Indeterminate
My brainThere isn’t anything wrong with you, stop malingering, STFU & GBTWReturn to work

With it laid out like that, the conclusion is pretty clear; I should listen to my brain because it appears to have the loudest and most annoying voice.

Okay, not really. But I reserve the right to feel like a slacker for staying home.

Clever title

Something that I never really understood, in all my years of working in health care, is the patients with serious illnesses that couldn’t stop talking about how lucky they were. Couldn’t wrap my head around it. How can people consider themselves “lucky” when they also have advanced heart failure, or some kind of progressive neurological disease? Or cancer. Someone who was really lucky wouldn’t be sick in the first place, right?

What I think I am beginning to understand is that I’ve been looking at it from the wrong perspective. This is not “lucky” in the sense of “I just won the lottery” this is “lucky” in the sense of “the building I was in exploded and collapsed around me but I didn’t die”.

So with that out of the way, I am exceptionally lucky. This whole thing could be so much worse.

I have a support system of friends and family without which my current situation would have gone from difficult and unpleasant to catastrophic. The material and mental support I have received has made it possible to navigate this whole thing with at least some sense, somewhere in the back of my mind, that things were going to be okay eventually. The loudest part of my brain is still saying that things are terrible now and the whole thing is so unmanageable that things are going to be terrible forever, but the actually smart part of my brain knows that even though I have fallen out of an airplane, I have a parachute. Lucky.

On the other end of the spectrum is the American health care system and everything surrounding it.

I have been missing a lot of work. Like I think I’ve probably only worked maybe 5 or 6 days in the last several weeks. When this whole thing started I tried to get a medical leave from work. The Family and Medical Leave Act of 1993 (FMLA) requires employers to provide employees with job-protected and unpaid leave for qualified medical and family reasons. It also set up a federal system for managing leave granted under the law but said that employers could set up their own system as long as it was substantially similar to the federal program and provided substantially similar benefits. I knew going in that, one way or another, I should be able to get some kind of approved leave.

I feel like I should say, at this point, that I am not an expert at navigating the consumer side of health care. Far from it. There are almost certainly easier and better ways to attempt what I have been attempting but they certainly aren’t obvious.

Anyway, so I contact my primary care doctor, human resources at work and the third-party company that manages medical leave and related things for my employer. Got paperwork rolling and things were looking okay. Then I find out that I don’t qualify for medical leave through my employer because I haven’t worked there long enough. I can’t remember what the requirement was exactly but I wasn’t even close. Fine, if I can’t get this through my employer I’ll just dive into the state and federal systems. Except I don’t qualify for those either because my employer has their own system set up and I have to go through that.

So I gave up on the idea of medical leave and some time passed. As it became more and more apparent that I was not going to be working full time through this I started looking in to the short term disability insurance that I pay for as part of my health benefits at work. This seems, on the face of it, to be a perfect fit for short term disability. I am, to a greater or lesser extent, kind of disabled right now but, because I am very lucky (see above), it should be pretty short term. Great, lets get this going.

Step One: You must be on approved medical leave to access your short term disability benefits.

Well shit.

So there it is, the Greatest Health Care System In the World™ – pay a lot, get a little.

Edited to add; This is how dumb I am – The whole time I was dealing with this whole question of leave and benefits and insurance I was thinking that what I really needed was a social worker. Many astute readers will immediately pick up on the fact that I know a social worker, and a really good social worker at that.

I still think it is extremely unlikely that I will be able to get any kind of coverage for the time I missed but at least I have a couple new leads to follow.

Basement Demolition: Complete etc.

The basement demolition is, as stated in the title, complete. We have a pump now that I have been assured will keep the basement dry during anything short of a Biblical flood. I’m trying to be optimistic about that.

The reconstruction will be in three phases. The first phase is wall reconstruction and painting which will start in about a week and take probably 5-7 days. Second phase is floor reconstruction which will take place at some point after the wall reconstruction and probably won’t take more than 2 days (if that). Third phase is unpacking which will start after the floors are done and take as long as it takes. I’m hoping that everything will be done by the end of October.

In other aspects of my life, the fatigue from my treatments is running roughshod. Last night I slept until I couldn’t sleep anymore and I’m still exhausted. I went downstairs to survey the wreckage and start making preliminary plans for reconstruction and that took all the energy I had. It’s really a good thing that I only have two more of these weekly treatments. I’ve missed two days of work this week and I’ll just have to see how I feel tomorrow.

It is enormously frustrating. I take stock of all the activities I’ve done over the last two days and the list is not long. At all. Somehow, though, I don’t have enough energy to do anything more and, while one part of my brain knows what is going on and understands, the other part of my brain will not shut up about how lazy I’m being.

As I believe I’ve mentioned, sometimes my brain is not particularly helpful.

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.

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.

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.