A Strange Thing To Celebrate

On Monday, October 6, 22 months since I started the process, I became officially disabled. After all the endless fields of red tape, bureaucracy, and non-responses, the money showed up in my account. No fanfare, no notification that I’ve seen yet just, *poof*, direct deposit.

The implications of this are still sinking in. This has been the overshadowing issue in my life for two years and it’s over without even a party popper going off. I’m not complaining about the lack of fanfare, mind, it’s just adding to the stunned disbelief I’m feeling right now.

This is unequivocally good news, something that has been absent for a long time.

Hey… didn’t I have cancer?

Remember how I was going to start a blog to keep everyone up to date on how my cancer treatment was going? What ever happened with that?

I started the second round of BCG yesterday. I had completely forgotten about it until about 5 pm Monday evening so it was a nice surprise. As always the procedure went smoothly. Pretty much as soon as I got home, though, I was right back to the frequency and urgency with urination. It was like the treatment never stopped. I’m feeling a little fatigued today but there are plenty of non-cancer treatment related reasons for that as well.

The plan was for three more doses but that is going to get really complicated. After my second dose, I am going to be changing insurance and my current urologist won’t take my new insurance. Just out of morbid curiosity I asked the billing people at the clinic how much getting a dose would cost and the answer was somewhere on the order of $10,000. For one dose.

Yeah. I’m just going to finish this post later. Or not.

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.

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.

————

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.

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…

Oh right. That.

I suppose people might be curious about the outcome of my visit to the urologist today.

The news is not bad. Dr. Urologist was happy with how everything looked right now and wants to wait another three months for the inflammation from round 1 to really get gone before starting round 2. There are still some cytology results that we’re waiting for but Dr. Urologist is not really expecting anything to show up.

This is pretty good news under the circumstances. The fact that he is willing to wait three months before more treatment is reassuring. The only down-side is that I will probably have to go back to my real job for at least a while until round 2 starts.

Nothing is perfect.

In the spirit of transparency

Too much information alert!

Proceed at your own risk

This is another one of those things that I would ordinarily keep to myself, both because I didn’t want people around me to worry, and because I genuinely don’t know how much it should be worried about at all.

Since Friday I have been having symptoms very much like a urinary tract infection. This was kind of curious. While I have more reason than some to have a uti, it’s pretty much been life as usual for me for the last month or so and I would think that any infection issues related to the BCG treatments would have popped up before now.

So I went in to urgent care (my primary care doctor was scheduled out for the next month or so), dropped off a urine specimen, picked up a prescription for nitrofurantoin and went on my way. A couple of days later I got a call reporting that my urine culture was negative. Which would almost certainly mean I didn’t have a uti.

And yet I continued (and continue) to have symptoms very much like a urinary tract infection, only thing missing is fevers. So what is causing the symptoms?

The answer is, of course, “I don’t know, but probably not anything I’m going to be happy to find out about”. I already have an appointment with the urologist in three days and I don’t think three days is going to make any difference with anything one way or the other.

We shall see.

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.

So how am I doing?

Recalling that the original purpose of this blog was to be a platform for updates on my cancer treatment and not really a platform for me to bitch about Covid, and realizing that I hadn’t actually made mention of my condition for a while, I have decided to try and rein this thing in a bit by combining a rant about Covid with a brief update on how I’ve been feeling.

I am still on light duty at work. The fatigue has definitely improved but only to the point that it is limiting instead of debilitating. I asked the urology clinic nurse about this, given that it has now been a bit over a month since my last treatment and I still haven’t bounced all the way back. The urology clinic really had nothing to offer other than to say that it would be unusual for the fatigue caused by BCG treatments to last this long. I have an appointment with my primary care doctor to rule out any other possible cause and after that, who knows? There is also a good chance that part of why my activity tolerance has gone to shit is that I am completely deconditioned from sitting on my ass for the last month plus.

Whatever is causing it, I still don’t feel like I would have the endurance to make it through a 12 hour shift in the ICU, especially under current conditions. Which brings me to my rant about Covid;

The two incidents I posted about below (and there are plenty more stories like those circulating around) made me realize that I simultaneously feel profoundly grateful that I am not working on the unit right now and incredibly guilty because I am not working on the unit right now. Every hospital in the country is desperately short of ICU staff and I am, in my own small way, totally not making that situation even a little bit better. Especially if there isn’t an identifiable physical cause for my continued lack of energy, I am going to have a really hard time justifying sitting things out for much longer.

I’m scheduled on my light duty assignment through next week, which will give me time to see my primary care and make sure there isn’t anything weird or unlikely going on physically and then I have a somewhat difficult decision. I would really prefer to not dive right back in, but things out in the world are not likely to improve much any time soon and I am not going to be able to stay on light duty forever, so a return to the ICU is inevitable. With that being the case, is there any point to putting it off?