Tag: Treatments

Recovery

It has been almost two weeks since my last dose of BCG. The week of the 16th (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.

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.

Treatment #4; Basement Demolition days 1 & 2

This is something of a theme already but I feel moved to observe once again that the fatigue is real. I had planned to post most of this yesterday but the act of sitting down in front of a computer and trying to come up with words was going to take more energy than I had left at the end of the day. I messaged my sleep medicine doc regarding this whole fatigue thing and he said there were some things we could try but first he wants to check me for narcolepsy.

Now I’m all in favor of due diligence but I’m pretty sure there is a better explanation for my excessive daytime sleepiness than narcolepsy.

Anyway, the treatment schedule, as I understand it, is for two more weekly doses of BCG and then take 4-ish weeks off, do another scope and see what happens. This is good news in that it means I only have two more doses before I get some time off which will allow, hopefully, my energy levels to recover a bit.

Simultaneous to all this has been the demolition of the basement. I had more to blather on about with this but I’m kind of running down again so I’ll pick this up later.

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.

Laziness – Preliminary Results

When you have insomnia, you’re never really asleep, and you’re never really awake. With insomnia, nothing’s real. Everything is far away. Everything is a copy of a copy of a copy

Fight Club by Chuck Palahniuk

Edited to add – Was unpleasantly awake and restless, now back to being so exhausted my eyes are crossing. In the space of about two hours I’ve hit polar opposites.

This is really strange.

Treatment #2

The second treatment went very much the same as the first, minus the annoyance of driving and trying to park downtown since I was very kindly given a ride to and from so I wouldn’t have to deal with it.

I absolutely have been more fatigued than usual over the last few days but I’m still not sure how much is medication side-effects and how much is life side-effects. Treatment nurse said it was very likely both. It’s certainly not debilitating, but is is getting annoying. I have a couple days off with not much to do except homework so I’m going to try an experiment, FOR SCIENCE! My hypothesis is that if I spend the next two days being profoundly lazy, my energy level will improve.

I will post the results after a rigorous statistical analysis of the data.

Edited to add – Yeah, this is definitely more than my typical fatigue. I feel like I could go to bed now and sleep until Thursday.

Also, I’m starting to get some of those urinary tract infection-like symptoms. Sitting quietly wasting time playing video games and all of a sudden YOW! GOTTA PEE!

Fun stuff.

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.