an older man looking into his toilet at his neobladder stone

Things They Tell You That You Don’t Remember

Important background info: 6-year bladder cancer survivor, neobladder, no need to catheterize, continent during the day – pretty good at night with a 3.5-hour schedule. No other issues for all those years.

Okay – that’s the baseline.

Here’s the story.

Family dinner bonus

Back in April 2019, we had a family get together. My son was moving to Denver and we wanted to get together one last time before he left. We’d probably not see him for 6 months or so. It’s important that you know that for this story’s timeline.

After the dinner, my “pee” alarm on my phone went off (I set it for 3.5 hours to remind me), and I left the table to go to the bathroom. I expected the same experience I’ve had for 6 years.

I did not have that same experience.

So, there I was, sitting there doing my business when the flow stopped. It was way too soon in the process to be because I was empty so I pushed a little harder and BAM!, something "not fluid" popped free and traversed down my urethra from the neobladder and into the toilet.

The surprise of having something solid go through your urethra

Now, surprise would be an extreme understatement. Unless you’ve had a kidney stone or are sporting a neobladder where larger globs of mucus might flow through, the experience of having something solid or semi-solid go through your urethra is a fairly unique experience. It’s a bit unnerving. I don’t recommend it.

But, to continue.

Once that "interruption" was cleared, I emptied my neobladder and turned around to see what had happened. And there, floating in the bowl, was the object of my concern - a 1-cm dark-colored sphere (yeah, go look at what 1 cm looks like – it’s not that tiny!) I stared in disbelief. While it was a bit uncomfortable when it came out, there was no real pain. But when I saw the object and the size, I think I may have experienced “retroactive historical pain” (not that there really is something like that.) Just know, I was shocked.

After the shock wore off, I fished the object out of the bowl and wiped it clean, being careful not to damage it or smash it because I wasn’t sure if it was solid or just a weird glob of mucus. It was solid. It was weird. It was incredibly light. Hence the “floating.”

Bladder boulders

Of course, I called my urologist immediately and got their voicemail. I left a message and assumed I’d get a quick call back. I didn’t. It took about 2 days before I got a call. Which gave me waaaaay too much time to google “neobladder stones.” Please DO NOT DO THAT – unless you are extremely curious. Seriously. You will not be doing yourself any favors if you google it. Take my word for it.

Telling my wife about the neobladder stone

When I told my wife about it, she mentioned that she remembered the doctor saying something about neobladder stones.

Well, I didn’t remember that.

Now I’m concerned with all the other stuff I don’t remember! What else can I expect that I SHOULD know about but don’t?

I’m going to ask my urologist when I see him this week – in SEPTEMBER.

I guess it’s not an emergency

You read that right. My experience with my bladder boulder occurred in April, and the earliest I could get in to be looked at is September. I guess that is the definition of a “non-emergency.” 6 months after the event. SIX months!

Well, I went for a cystoscopy this week. For those that haven’t had one in the past – it’s a real treat. Kidding – it’s not fun but not really a pain either. Just a bit weird and uncomfortable.

Nothing unusual during my cystoscopy

The cystoscopy went fine. Nothing unusual lurking in my neobladder. The doctor was surprised too since he'd not seen anything in my May CAT scan. He said there was a small shadow on the film that might have been the stone. Since it floated when it came out, he thought maybe it wasn't dense enough to really show up on the scan. But he did not see any other stones in the neobladder so that is a relief.

I’m crossing my fingers that the one object is a rare occurrence and I don't have a potential rockslide coming in my future.

Moral of the story

There are so many things your cancer will include and so many things the doctors and nurses will cover that you won’t remember all of it. If you can, have a partner with you on the journey, they might catch a few things you don’t  - and be prepared for surprises. Even after you think you’ve put it all behind you and you’re just living the new normal there will be things that wake you up. Believe me, 1-cm rocks coming through your urethra qualifies as a “wake up!”

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