Tag: SideEffects

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.