Back to it

Today was my first visit with Dr. Urologist in several weeks. The visit included another scope to check out how everything is looking and it turns out that everything is looking pretty good. There is no new weirdness and the old weirdness seems to be healing up quite satisfactorily. I was due for another dose of BCG but the treatment nurse is on vacation. Dr. Urologist said that he was perfectly okay with me waiting until she gets back to start treatment again so I’m off the hook until the middle(-ish) of January. This is news that is about as good as I was likely to get today.

Right now the plan is still 3-4 weekly BCG treatments, followed by another scope once the inflammation from that has gone down (a few months after the last dose) and then if that continues to look good, monthly maintenance doses for 6 months. If things continue to look good after that I should be done with active treatment and just be up for scopes once or twice a year to make sure nothing else weird happens.

As everyone is aware, nothing weird has happened for the last three years so I’m sure that everything will continue to be normal and boring going forward with no surprises or unexpected complications at all.

Christmas movies

Rational people who discuss the relative quality of Christmas movies (a rather small subset of people) almost universally1 agree that the two main candidates for the greatest Christmas movie of all time are Lethal Weapon and Die Hard. I acknowledge the argument for making a distinction between Christmas Movies and movies that take place during Christmas but that is a debate for another day.

What I want to talk about today is the inclusion of a third candidate for greatest Christmas movie of all time; The Lion in Winter (1968).

Based on the play of the same name by James Goldman, and adapted by him as well, the movie tells the story of Henry II of England’s Christmas court in 1183, and the interpersonal and political dramas among Henry, Eleanor of Aquitaine, their children, and their guests.

The script runs the whole emotional spectrum over the course of the movie and is full of sharply funny and poignant dialogue. The cast is full of enough heavyweight actors that it bends light2 and even the soundtrack is extraordinarily good.

It is not a perfect film by any stretch. The directing and cinematography are not great, by modern standards at least, but it is still a towering achievement that easily deserves consideration as a Christmas classic.

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1 I would argue that disagreeing with the idea of those two movies being among, if not at the top of the list could almost certainly be used as evidence that would exclude someone from the “rational” category.

2One of the more enjoyable parts of the movie for me is Katharine Hepburn’s performance. She plays Eleanor of Aquitaine, who was notoriously French, but not only does she makes absolutely no attempt at a French accent, she doesn’t even make any attempt to conceal her own, quite broad, East Coast/New England accent (in her first scene she mentions that she’ll be attending a “Christmas co-aaht”). In spite of that she gives a performance so compelling that it almost pulls you into the screen.

Apparently, mental health is a real thing

There is a possibility that I’m overgeneralizing somewhat with this, and I may also be doing some post-hoc revisions of my internal dialogue. That said, what follows feels true to me and has allowed me to resolve some very perplexing things that my brain has been doing.

For some time now I have been having a harder time than usual with work. I’ve been finding it increasingly difficult to go to work in the first place and once I’m there I have a really hard time staying. This is not an entirely new phenomenon, and is also not unique to me. Who looks forward to going to work and who is happy to be there once they arrive? Almost no one, that’s who. That said, this has felt very different than the usual vague malaise of dissatisfaction that comes from having to put down Animal Crossing and leave the house.

“Well of course you’re having problems,” you might say, “you’ve been in cancer treatment and dealing with fatigue from that. No one expects you to be at the top of your form!”

This is true. I have a very real physical medical condition and I have unquestionably been experiencing some physical side effects from my treatment. However, at this point there really isn’t any reason that these side effects should be as limiting as they appear to be and, if I’m completely honest, they probably aren’t as limiting as I have been allowing them to be.

As I have discussed here previously, my brain constantly tells me that I am malingering or exploiting the system somehow because, in terms of physical health, I likely could be working without any restrictions right now. The slow realization that there might not be an actual physical problem sapping my willpower and energy has kicked the “you’re just a lazy bastard” message from my brain into overdrive in the last few weeks

Again, though, I genuinely have been feeling like I’m incapable of working, and the worst scolding from my brain hasn’t made it any easier to keep pushing and just do the work, so WTF?

At this juncture it is important for the narrative that I mention my longstanding prejudice when it comes to mental health. My poor opinion results from long years of dealing with the healthcare consuming public, which certainly has no shortage of people with genuine, serious issues, but also no shortage of people just trying to game the system. The way my mind works, it comes down to Sick or Not-Sick. You can’t objectively measure depression, anxiety, and trauma so they probably aren’t real. Intellectually I know this is nonsense and when it comes to patients I try hard to stay aware of this bias and to not let it affect the care I provide.

When it comes to myself, though, it is something of a blind spot. Deep down, I don’t completely accept the notion that my mental health is a real thing that can actually affect how I approach the world. Again, intellectually I know this is nonsense but that seems to be how my brain wants to see things.

Keeping all that in mind, my thought process has been something like the following;

Stage 1

  • The only valid reasons for me being unable to work are physical ones.
  • I’ve been feeling very limited in my ability to work.
  • Therefore, something must be physically wrong with me.

 Stage 2

  • The only valid reasons for me being unable to work are physical ones.
  • I don’t physically feel all that bad, really.
  • I still appear to be limited in my ability to work.
  • Therefore, I must be faking it. 

Stage 3

  • The only valid reasons for me being unable to work are physical ones.
  • I still don’t physically feel all that bad, really
  • I still appear to be limited in my ability to work.
  • This doesn’t feel at all like I’m faking it.
  • ???

The explanation, of course, is that my first assumption is faulty. I really am limited in my ability to work but at this point it’s for mostly psychological and emotional reasons, not physical. 

In February of 2020, an emergency room doctor at Evergreen Medical Center in Kirkland was infected with Covid. His condition deteriorated quickly and he was transferred out of the ICU at Evergreen to Swedish Cherry Hill so he could be put on ECMO. He was the first Covid patient on the west coast, probably in the whole United States, to be put on ECMO. That was my unit and I was one of the lead ECMO specialists.

I lost count of how many more Covid patients we put on before I left Cherry Hill. They all were insanely sick1, insanely complex to care for and most of them died, as did most of the Covid patients we had that weren’t on ECMO.

This went on non-stop.

For months.

And it still hasn’t exactly stopped yet.

There was a lot of non-Covid unrest at Swedish at the time as well, of course, so I had plenty of reason to be discontent before I left. Given that mental health isn’t real, I attributed my angst to the external situation and didn’t think about it past that.

Since then I have changed jobs two more times for a total of three job changes in the last 18 months or so. Each of the jobs ended up feeling unsatisfactory for one reason or another and, like I had at Swedish, I felt compelled to leave. True, the working conditions weren’t (and aren’t) ideal but I’m also starting to think that there is an underlying current of mental disfunction that is making it nearly impossible to get comfortable and settle in.

The point is that it has been a difficult couple of years and perhaps there could be some lingering trauma that I’ll probably need to deal with at some point.

For all my airs of professionally detached objectivity, I may be merely human after all.

Looking after my mental health has never been one of my strong suits but entertaining the idea that I could be mentally fatigued enough to impact my job performance has been something of an eye-opener. It explains a great deal of what I’ve been experiencing and it has already helped me to get the asshole part of my brain to shut up every now and then. Beyond that, I’m not sure if this shift in thinking will make any difference or not.

This post was very long and has an unsatisfying conclusion. It also may not matter because, hopefully, I will be changing jobs again in the near future.

But that is a story for another day.

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1 I’ve talked about this before too, although I can’t remember if it was here. I don’t think it’s possible to convey the actual reality of how sick these patients were/are to normal (non-medical) people. Even most medical people, I think, fail to grasp how sick they are. The best analogy I’ve come up with is that caring for these patients is like trying to keep someone who is on fire alive but you have to do it without being able to extinguish them. I love doing that kind of work but it is exhausting under the best of circumstances.

This is the best thing I’ve listened to in a while

This is another one of those musical finds that more or less randomly dropped into my lap. I’ve been listening to a lot of music lately. I listen to music while I’m doing homework, I listen to music while I’m doing contract tracing, I listen to music when I’m trying to settle my brain before bed. I have pretty extensive music collection but looked at from a broad perspective there are really only five or six genres of music represented and recently it’s all been feeling a little stale.

Some time ago, and I can’t even remember where I heard about it, I downloaded the Boomplay app. For those not familiar, Boomplay is kind of Spotify for the African continent. My exposure to afro-pop is limited to the very small collection of artists that have broken in to the U.S. market to some extent so I was expecting to be able to find something new and (hopefully) interesting.

In one of those tiny sparks of serendipity, the first song that was playing when I switched it on was this

Angélique Kpasseloko Hinto Hounsinou Kandjo Manta Zogbin Kidjo is a musician, actor and activist who was born in Benin in West Africa and that is the extent of what I know about her.

In 2018 she released a cover of Remain In Light by the Talking Heads. The whole album.

It. Is. Amazing.

One of the best ways to get me hooked into a song is to take an element that is familiar and transforming it into something very different, DJ Shadow using a sample from El Condor Pasa (If I Could) in You Can’t Go Home Again, for example, or Diane Birch’s Velveteen Age EP. Remain In Light is one of my favorite Talking Heads albums (along with almost all the others if I’m honest) and it works surprisingly well as an afro-pop album. It is also unquestionably something different, even if all the songs are more than 40 years old at this point.

At some point in the near future, once I’m able to stop compulsively listening to this album, I want to dig in to some of her other material. I’m hoping more discoveries await.

Oh look!

Now that I’ve neglected this to the point that no one is reading anymore, it’s safe to post again.

The truth is there hasn’t been anything happening on the cancer treatment front, I’ve more or less settled into a routine with work, and my mental health is better overall than it’s been in quite a while. Of course that has meant I haven’t needed to whine about anything here. And I pretty much still don’t but there are definitely things on the horizon.

Looming largest in my mind right now is another covid surge. I’m sure any number of the none people reading this have heard me lamenting that I couldn’t do another year of covid and it’s looking like another year of covid is a good possibility. Having spent no small amount of time ruminating on this, right now, from a mental standpoint I think I actually could do another year of covid. I would certainly be happier to not have to but, strange as it may seem, having a couple months mostly away from the bedside may have allowed me to recharge my batteries a little bit. Well maybe not another year of covid, maybe six months. I don’t know. Anyway, the point is I could definitely do one day at a time which is more than I would have been willing to say a few weeks ago.

As an aside – there really isn’t enough information on the omicron variant to make any definitive statements about what the next year is going to look like. What is noteworthy is that in South Africa, where omicron was first identified, the delta variant was pretty much the exclusive strain being passed around and omicron is out-competing it and is on it’s way to becoming the new dominant strain. It is a deeply concerning variant and an excellent reason to get your vaccine booster ASAP if you haven’t already.

Anyway, this revelation that stopping to rest for a while can replenish one’s stores of mental and physical energy is the latest in a series of startling discoveries I have made recently now that my brain has had time to reboot.

The first of these came to me maybe two weeks ago. I believe I have lamented here before that I didn’t really know what to do with the advice to “make time for yourself”. The foundation of my difficulties was that I had more things to do than time to do them and it was impossible for me to make time for anything else. Short of actually making time (see any number of science-fiction stories to learn why that isn’t a good idea) I genuinely couldn’t comprehend how I was supposed to “make time for yourself”.

My revelation came while putting together a to-do list for the week. As was usual, I knew there wasn’t going to be time to get to everything so I was triaging and prioritizing what I really had to get done and what I could let slide and it occurred to me that I could just put myself on the to-do list and treat it the way I would any other project. And that the time-for-myself project didn’t always have to be the one that got dropped when it came down to prioritizing for time. If I had been on the road to Damascus I would have fallen to the ground. This was a revolutionary technique that I could use to try and…

…right… make time for yourself… like everyone has been telling you to…

Ahem.

Right. So I’ve been making time for myself and the world hasn’t ended yet.

Clever Title

Back to school. This is (hopefully) my penultimate term in my masters program and what happens after that is not at all certain. I had hoped to have the basement done before I had to start school again but in spite of that I think I’m at a point where I’ll be able to manage.

Work has been interesting. There is an actual sick (in the previously discussed “sick or not-sick” sense) patient on the unit right now, one of the kind that I have spent the last 5-ish years specializing to take care of. The unit at my current place of employment has some very smart, very capable nurses and doctors but very few of them have a lot of experience caring for specifically this kind of patient. This is the kind of patient I would very much like to see more of on the unit and, I think, that is a goal that is shared by the Powers-That-Be at the hospital.

So there’s this sick patient and one of the assistant managers texted me to ask if I could come in to work tonight to help out. A couple more bits of relevant information; I worked last night, it was a pretty exhausting shift, and I didn’t get much sleep today for several different reasons. I’m really tired, is the point to all that. Even so, if this had been not that many years ago, I would have said yes without even pausing to think. I had told managers and physicians that I would live at the hospital 24/7 if that’s what was required to take care of the patient and I nearly did on more than one occasion.

I’m going to go on a little side-track here but we’ll get back to the main storyline in a moment. I have frequently thought that when I tell someone about the long hours and short sleep that I put myself through to take care of these complicated patients, they infer that this is due to some depth of character and dedication to the nursing profession that drives me to do these things. Nothing could be further from the truth.

The fact is, being a bedside nurse is kind of a shit job. All too often it is literally a shit job. Yes, it pays well, but really the only thing that makes all the, literal and figurative, shit worth it is if you’re doing something interesting. I pushed myself taking care of these patients because I wanted people to keep sending those kinds of patients to our unit. I wanted the admitting services to know that they could dump the sickest patient imaginable on us and we’d take it happily. Being a nurse is the only thing I know how to do that someone will actually pay me for so, if I need to keep working as a nurse, I need a good supply of crazy sick patients so I don’t get fed up with all the nonsense. This could potentially be a much longer tirade but I don’t want to lose focus.

The end of the story for today’s incident is that I did not go in to work. I really wanted to for all the above discussed reasons, but I also knew that it would really not be good for me and self-care won out.

Also, tomorrow we have our first D&D game in almost two months and I am not missing it.

Well at least I found out

It turns out that I may not be as ready to go back to regular work as I thought I was. Tuesday night was fine, I felt a bit more tired than usual but it was also my first full night shift in several weeks. Wednesday I felt like I’d been put through a wringer and I most certainly didn’t feel like I could go back and do it again. My new proposal is going to be working on the unit, say, Tuesday and Thursday, and in employee health on Wednesday and Friday. I think that might work. Once again, though, the only real way to find out is to try it and see what happens.

To be perfectly honest, part of the reason I felt so drained on Wednesday was that I spent a couple hours of it fighting with Verizon about phones. Our phones are old enough that Apple has started throttling their data speed and battery function their performance has really started to suffer, so we decided it was time to get new ones. Verizon, as I’m sure most carriers do, has a deal to turn in your old phone and get an upgrade (with an extra two year contract to stay with Verizon of course) so we did. Ordered two phones, one for Shannon’s number and one for mine. This was maybe the first week of October. For a couple weeks everything looked fine, then I got an email from Verizon saying that one of the phone orders was cancelled because it had been “confirmed as fraudulent”. This was news to me. I don’t recall anyone actually asking me if the order was fraudulent and the other order had gone through without a hitch.

I called Verizon’s customer service line and, after slightly more than the usual frustration navigating through their automated system, and after spending 75 minutes on the phone with three different people, the “fraudulent” order was cancelled and a new order put in. Good. This was late Wednesday morning.

That afternoon I got another email from Verizon saying that a recent order had been flagged as fraudulent and that I needed to contact the fraud prevention department.

So after considerably more than the usual frustration navigating through their automated system, and after spending 45 minutes on the phone with two different people, the “fraudulent” order was cancelled and a new order was put in.

I did give serious consideration to cancelling everything and switching carriers but after making some inquiries it seems like all the carriers are approximately equally awful.

First world problems…

Updates

Updates are called for;

  • House:
    • The basement floor project is still in a holding pattern. Last word was that everything should be in place to have it done by the end of the month
    • The new plumbing leak is also in a holding pattern. There is slightly better news than I expected here. Not good news, but not as bad as it could be. The leak was from the seal on the toilet in the bathroom upstairs. It was fast and (relatively) inexpensive to fix. We are waiting on hearing back from the people who are going to come and fix the floor and/or ceiling to find out exactly what is required there.
  • Work:
    • I’m going back to work on the unit starting next week. With the most recent covid surge settling down, Employee Health isn’t as busy as they have been and don’t need as much help. There are certainly other things I could do for light duty but the fact is I’m probably recovered enough to just go back to work. I’m never going to feel ready and the only way to find out if I can do it is to do it.
  • Health
    • Health is also in a holding pattern. No news has been good news.
    • Mental health is honestly as good as it can be under the circumstances. The previous post announcing the bathroom leak is typical of how I’ve been reacting to new difficulties recently. I’ve been feeling very brittle; when something hits I kind of break into a thousand little pieces and can’t see anything but crisis and my brain does everything it can to persuade me that things are as bad as they can possibly be and they will never be fixed. This is a known issue. I haven’t had much luck moderating my initial, disproportionately negative, response but I have been getting better at pulling myself together again.

The fact is, in spite of everything I, right now, today, I feel pretty good both physically and mentally. There is still a lot on my plate and I’ve been ready for all this shit to be done for about 6 months or so, but the struggle can continue.

Yeah, this is about what I’ve come to expect

Remember, a couple of times now I think, I mentioned how everything suddenly got much worse right after I started feeling like I was getting a few things off my plate? Well the basement floor is almost done (just ignore that it is still “almost” done after two months of wrangling with the floor people), I’m on a term break from school until the end of the month, I’ve got a three month break from cancer treatment, and I’m still, for the time being, working from home. Things are settling down and maybe, just maybe, I can come out of crisis mode for a while.

Yesterday, I found this in the downstairs bathroom –


That would be a leak in the plumbing somewhere in the ceiling. The bulge was not there two days ago and as for the (what are hopefully) patches of mildew (and not black mold) I couldn’t say how long they’ve been there. I don’t routinely inspect my ceilings because I am a shit homeowner, apparently.

The plumber is supposed to arrive in about fifteen minutes and then we get to spend a few thousand dollars and FSM knows how long having at least one bathroom destroyed (maybe both bathrooms if our usual luck continues) and then we get to spend another few thousand dollars and FSM knows how long getting it put back together again.

We made a big mistake when we bought instead of just continuing to rent.