SideEffects – Page 2

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.

SOURCE	SUMMARY OF EVIDENCE	CONCLUSION
Friends and family	Stay the f*** home, doofus	Stay on light duty
Critical care management	We’d like to have you back but take whatever time you need	Indeterminate, leans return to work
Employee health management	We want you to get better of course, but we really need the help	Indeterminate, leans stay on light duty
Mental health provider	You’ve been through a great deal recently and there is nothing wrong with staying on light duty if you feel like you need to	Stay on light duty
Urologist	Nothing we did should be making you fatigued at this point	Return to work
Primary care provider	You 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 brain	There isn’t anything wrong with you, stop malingering, STFU & GBTW	Return 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?

More recovery

I continue to feel a little better. I’m on light duty at least through September 10, longer if I still don’t have my energy back. The complication is that on September 30 I go see the urologist for more testing and will likely start another short course of BCG. What this means is that I will likely be ready to come off light duty about the time that I will need to go back on light duty for round two. Awkward.

I felt enough better today that I made an attempt at chipping away on schoolwork. I won’t say that I accomplished much but it’s more than I’ve been able to do for the last few weeks so I’m still counting it as a win.

The basement also continues to make progress. The walls are done and (almost) all painted, as I may have mentioned previously, and the floor may be done as early as Friday which would mean that the only major project left is unpacking. Having the basement finished is going to be a huge weight off my mind and (hopefully) it won’t flood again in December.

Things could be worse.

Recovery

It has been almost two weeks since my last dose of BCG. The week of the 16^th (the week immediately following my last treatment) was still on the downhill slope but this week I’m starting to feel a little better.

Not well, but better. I’m going to stick on light duty for at least another week but at least I was able to do dishes and clean up around the house yesterday without feeling completely destroyed, just kind of destroyed.

This bodes well for the next few weeks, at least until I have to go back for my next three doses.

Light duty

For years, probably since the beginning of my nursing career, I had envisioned a time when, for whatever reason, I would no longer be doing bedside nursing. My dream “retirement job” has always been some form of telephone triage and today I have achieved that goal. The only down side is that it is temporary while I work the BCG fatigue out of my system.

My light duty is to cover the Covid symptom line for employee health. Employees that think they may have been exposed or that are having worrying symptoms call the number and I read down this whole list of questions to determine if they should get tested, if they need to quarantine and for how long, when they can go back to work, etc.

The charting is kind of a pain, but I am sitting at home in a dark, quiet room with my laptop and an algorithm/decision support tool and I don’t have to see another person or even change out of my pajamas. This is as close to a dream job as I am ever likely to get.

Edited to add; I was feeling pretty good today, like almost back to normal. Then I took the trash out (not something I usually struggle with) and am pretty seriously beat down again. When I stopped to think, I realized that probably why I felt good is that I hadn’t really done anything all day. 8 hours of “work” talking to people on the phone while I was lying in bed, leftovers for dinner so I didn’t have to cook anything, then sat around for a few hours generally being a slug.

The light duty is probably a really good idea.

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.

Follow up

Yesterday was really rough. The bath felt amazing while I was actually in the water but as soon as I got out I felt worse than before. Chills (no fever though), headache, weakness, dizziness, nausea, and what I think could only be called a severe generalized malaise, in addition to the ongoing bladder spasms. After a few hours of wishing I would just hurry up and die already, I gave up and took every pill I could think of that could possibly even maybe help (for the record it was 1000 mg of Tylenol, 20 mg of Pepcid, 8 mg of Zofran, 200 mg of Pyridium, 120 mg of simethicone, 2 Tums, 3 mg of melatonin and 100 mg of sumatriptan). After that I finally felt better enough that I could eat something and go to sleep.

As an aside, I don’t recommend the “shotgun” approach to treating symptoms as outlined above. Not only does it lack any kind of style or elegance, if you throw the kitchen sink at your patient and they get better there’s no real way to figure out which of the 9000 things you did actually worked. That said, desperate times and all that.

Anyway, today is a little better so far. The Pyridium seems(?) to be helping(?) the bladder spasms and I’m back to baseline with maybe feeling a little wrung out from feeling so terrible yesterday.

hopefully this was a fluke and isn’t going to be typical of how I’m going to react to future BCG doses but, again, the only way to find out is to just keep going.

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.

Starting to feel like a broken record

Fatigue. Fatigue, fatigue, fatigue, fatigue. I really have difficulty trying to express what this is like. If anyone has had a car with a starter that failed, the feeling when you sit down, turn the ignition key and it just goes *click*, that’s kind of what it’s like. It’s not a dead battery exactly, everything is there and everything should work but somehow there is a connection missing that prevents anything from happening; “I think I’ll do some dishes.” *click* “Or maybe I’ll just sit on the couch”. “I have to go to work tonight.” *click* “Or I’ll go to bed”.

As I briefly mentioned, a couple days ago I decided to try kind of an experiment. I went to bed early and slept until I woke up. I stirred around for a little bit and then took a nap, and after I woke up I took another nap. Something happened that I can’t recall ever happening before; I slept until I genuinely could not sleep any more. Around 10 hours of sleep at night, two or three naps that lasted a couple hours each and I was wide awake. But I still felt exhausted and still didn’t have enough energy to do anything.

I suppose it would be like being on a strong muscle relaxer or a weak paralytic. Your brain is wide awake but you just can’t move your body.

I’m fully willing to accept that there may be a psychological component to this as well. This sucks. I’m not enjoying it. I can’t do everything I need to, let alone anything I want to, which is frustrating and upsetting which makes it even harder to try and muster the willpower to do anything.

Fortunately, as previously mentioned, I only have two more weekly treatments left (one after tomorrow!) but I have no idea how long it will take for my energy levels to get back to something closer to baseline. I suppose there is nothing for it but to wait and find out.

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.