Follow up

Taking the CES-A exam started out a little rough. The deal is that they email you a personalized link and password to log in to the test, then you just log in from a computer and away you go. It is a proctored exam but fortunately the proctor was someone I had worked closely with for years at a previous job so he was tolerant of the shenanigans that I went through before the test.

The difficulty started when I couldn’t find the email with the link and password to take the test. I dug through all my email accounts, all my trash folders and all my spam folders with no luck. I knew I had received the email because I remembered looking at it and specifically thinking that I needed to save it and not throw it away but I could not find it anywhere. Looked in all my personal accounts and my work account and nothing. Fortunately there is a help line number to call, which I did and left a message. To the testing organization’s credit, they called back pretty quickly and the problem was identified easily. Somehow I had managed to give them the email address that I use exclusively for paying utility bills; gas, electric, internet, all that. The only explanation that I have is that my browser must have auto-filled that address when I was filling out the testing application and I just didn’t notice. I hadn’t checked that email account because it never occurred to me that I would have used it but once I checked it, there was the link and the password. Phew.

As happens most times when I take multiple choice tests, I managed to zip through the questions pretty quickly and, also like most times when I take multiple choice tests, I was absolutely sure that I was getting every single one wrong.

At the end, I did manage to pass with 88% which I feel pretty good about having gone in cold with absolutely no preparation. I could have done better if I had studied since there were a good handful of questions about things that we had consciously decided to not do when we were putting together the protocols and procedures for our ECMO program. Getting into the details on that would take a lot of arm waving and a lot of pictures with circles and arrows and a paragraph on the back of each one explaining what each one was, which I’m happy to do but I can’t imagine it would be particularly interesting to anyone who isn’t a total nerd about mechanical circulatory support. I will say, though, that the questions did reinforce, in my mind, that we had made the correct decision when we chose to not monitor the parameters that they were asking about on the test. It’s kind of neat but it doesn’t really contribute anything to the safety or efficacy of the treatment and it is very likely to just cause angst and confusion on a day-to-day or hour-to-hour basis so we really felt it was better to skip it in our program.

So the final outcome is that I get a $1 raise as a certification bonus and I can now add CES-A after my name and, as anyone who works in healthcare knows, the only really important thing is how many letters you have after your name.

(Not really though. In fact I find it uniquely annoying when people add every degree and credential they have after their names. it makes them look like they’re trying to compensate for something. I’ll just stick with plain and simple RN, thanks.)

Treatment #6

Fortunately this week seems to be going much better than last week, which is not a high bar to get over. I’m back to just feeling stupidly tired all the time but no nausea, chills or bladder spasms, so improvement?

This was the last of the first round of BCG treatments and I am very hopeful that, once I don’t get anther dose next Monday, I will start to recover a little bit of my energy. Of course now that I am (hopefully) a week away from starting to feel better I’ve finally managed to get some sort of light duty sorted out so I’m going to start working again tomorrow doing something for employee health, exactly what isn’t really clear. Never fear though, I do still intend to take full advantage of every minute of light duty I can get, even if I start feeling better immediately.

Fun story; I’ve had a great deal occupying my mind recently and had completely forgotten that, at some point in the semi-remote past, I signed up to take the CES-A exam. No, not Certified Excel Specialist in Accounting, Certified ECMO Specialist – Adult. (aside – what kind of special hell do people who create an initialism that contains an abbreviation go to?) This is a 100 question test developed by the American Society of ExtraCorporeal Technology and the International Board of Blood Management which is designed to demonstrate the subject’s knowledge and expertise in various aspects of extracorporeal life support. The test is at 7 am tomorrow, is supposedly very challenging, can’t be rescheduled, and I haven’t studied for it at all. I did, however, drop $400 for the privilege of taking this test so I am absolutely going to show up and take it anyway, I just don’t have very high hopes about passing.

Wish me luck.

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.

Treatment #5

Holy shit. I don’t know why exactly but today has been, very likely, the most difficult day I have had in this whole process so far. The fatigue, of course, is hitting me like a ton of bricks and I’m having these ridiculous bladder spasms that are new and are bringing an extra level of excitement to the whole thing.

If you have never experienced a bladder spasm, they are pretty remarkable. I suppose it would be analogous to bad menstrual cramps, which doesn’t necessarily help to paint a picture for those audience members who, like myself, have never had a uterus. Take my word, though, that they are very unpleasant. The bladder spasms that is. My experience with menstrual cramps remains second-hand.

The urology clinic staff suggested I try Pyridium (phenazopyridine) for the badder spasms and I’m optimistic about potential relief from that. However, while sympathetic, they still don’t really have a whole lot to offer that would mitigate the fatigue. In fact they recommended that I cut back on my caffeine intake because it is an irritant and could be making the bladder spasms worse. So there.

The good news is that my manager at work could not have been any more supportive through this whole thing. She is looking in to some light duty options for me for the next couple of weeks, which I’m certain will be necessary.

This absolutely sucks. I am very much not having a good time.

Edited to add; I have found the answer to a question that the rational part of my brain has quietly been pondering in the background since this whole thing started. The question being “how bad do things have to get before I give up the pretense that I can just power my way through this like nothing is happening?”

The answer is: this bad. I cannot deceive myself anymore. I may not be “sick” but neither am I well. This is the limit. Merely human after all.

Edited additionally to add; You know what’s awesome? Bubble baths. I know we’re in the middle of another excessive heat warning but I am, right this very minute, soaking in a nice warm bath with lemon-ginger bath salts. It is really helping me feel less terrible.

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.

I really need to stop paying attention to the news

We are so, so, SO fucked.

The new Republican talking point is that it’s the CDC recommending for people to start wearing masks again that is causing all the vaccine hesitancy in red states. The Governor of Missouri was on Fox this morning and said the following;

The recently updated CDC guidance regarding mask wearing for fully vaccinated individuals is disappointing and concerning. It’s disappointing because it is inconsistent with the overwhelming evidence surrounding the efficacy of the vaccines and their proven results, and it only serves to disrupt the increases we are seeing in vaccine uptake. This self-inflicted setback encourages skepticism and vaccine hesitancy at a time when the goal is to prevent serious illnesses and deaths from COVID-19 through vaccination. It’s concerning because the nation’s top public health agency appears to be cowering to the political pressures of those who only want to force mandates and shutdowns, which only further prolong the recovery we as a nation are working towards. This decision only promotes fear and further division among our citizens.

How is Missouri fairing with the latest surge in cases? I’m glad you asked!


This pandemic is never ever EVER going to end and all it’s going to take is one unlucky mutation incubated in some ignorant-ass yokel and The Stand will no longer be a work of fiction.

There is nothing that I, personally, can do about any of this and when I think about the fact that I am likely looking at ANOTHER year of wearing isolation gear and shoveling corpses in the ICU it just makes my dissatisfaction with current circumstances in general that much worse.

So this is it. I’m swearing off news media for at least a week. Maybe a couple months. FSM knows I’m not going to have to follow anything too closely to know when the surge hits the Trump-Humper counties in Washington because I’ll be neck deep in it at work.

I’m counting on my friends and family to keep me up to date in anything interesting and non-covid related that happens. Also, if anyone has any suggestions for podcasts with episodes of around 20-30 minutes that I can listen to on my commute I would welcome them.


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.

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.

Treatment #1

It took considerably longer for me to drive up to Seattle, park, and get checked in than it did to get my first dose of BCG.

Before I had my cystoscopy, the part of this whole thing that I was most worried about was having a catheter placed. I’ve been a nurse for a while now and I would hesitate to even guess how many urinary catheters I’ve put in people. Many of them were sedated or otherwise unconscious at the time but of the people who were awake reactions ranged from saying that it was uncomfortable to screaming like they’d been hit with a branding iron. That wide a spread in peoples reactions had always prevented me from forming any firm opinion on how uncomfortable it may or may not be, objectively speaking (yes, I know – pain is subjective, pain is what the patient says it is, blah, blah, STFU & GBTW).

My experience was that with enough lidocaine gel it really wasn’t that bad. This was quite a relief since I will be getting an in-and-out catheter intermittently for the next few months.

So the treatment itself was quick and not terribly painful. The only difficulty is that I have to not pee for at least two hours after I get the dose of BCG. This is further complicated by the fact that I will need to provide a urine specimen before each treatment. This means I have to find the balance between being hydrated enough that I can give a specimen but not hydrated so much that I’m going to explode when I can’t go to the bathroom for two hours. Fortunately my years working in the ICU and frequently being too busy to take a bathroom break for 12 hours has prepared me for this.

As far as any side-effects, I am unquestionably feeling fatigued but I really think that is more related to going straight from working Saturday night to working on clearing out the basement on Sunday followed by not sleeping terribly well Sunday night. There have, so far, not been any other symptoms.

Interestingly, I got a list of instructions to follow when I do urinate for the first time after getting a dose of BCG. I was told to sit down rather than standing (to reduce splashing I assume) and that I should pour two cups of bleach in the toilet bowl and let it sit for at least 15 minutes before flushing. Obviously there is something with the BCG that they don’t want wandering around in the sewers but what that might be and how bleach stops it from happening is something I will maybe have to investigate more.