I went back and read my last post and I’m amazed that it is even as coherent as it is. I was sitting in the office writing that post, with fairly constant interruption.. from my step father, sitting in his rocking chair in my folks living room by the fireplace where we were watching the football game, wondering if he could fetch me a drink.. “No thanks, I’m fine for now.” From Hill who was preparing a shopping list for the grocery store, but had in fact left for the store at least half an hour earlier. There were other interruptions that I can’t remember now, all equally confusing in their quality of realism AND their obvious absurdity. I was alone in the room. The room was our office, and not my parents living room. And yet I was having the most vivid interactions with people who weren’t there. I was sleepy for sure. Beginning to doze off, and yet these interactions didn’t have the quality of dreams. I was AWAKE as they happened.. (but I just said I was beginning to doze off..?) Crap. It’s happening to me again. I’m going to go get another cup of coffee. I’d like to get this post out so I can get to the shop and play on my milling machine! And WHY on earth does Hill have a black eye?? And WHAT is funny about it???
Ok. I have coffee.
After finishing that post, or ending it at any rate, I went into the bedroom to have a nap. Hill intercepted me on the way there, “Are you all right, baby!?” I had sent her a text a little earlier that said “I’m hallucinating a little. You’re at Fairway, right?”
“Yeah. I’m fine, I think, I just need to have a rest.” I wandered into the bedroom and she followed me. It wasn’t until she was lying down on the bed that I noticed, or maybe she pointed out, that she had a black eye, or a quickly developing one anyway. She had slipped on the ice on the way home from the grocery store and fallen on her face.. Her hands have been asked where they were at the time, and they’re pleading the 5th (in her pockets keeping warm, I suspect).
We both fell asleep.
At some point during the nap I was woken up by the washing machine trying to shake itself to pieces and take most of the surrounding cabinetry with it. An unbalanced load, causing the machine to shift back forth up down 3 or 4 inches at a time (a problem that has been there for a while, but keeps getting worse). Real or hallucination. I can’t be sure, but I replaced the washing machine this week just in case.
I went back to sleep. The next time I woke up it was dark. I had no idea what day or time it was. I also had no idea why I was soaking wet. I figured that out quickly enough, though and thought, “shit shit, I hope I haven’t peed all over Hill!!” That’s when I noticed that Hill wasn’t in the bed.. and that I hadn’t been IN the bed either really, rather on top of it. AND I was fully dressed (and fully soaked in urine.. as was the bed under me). AHA! This was a nap! It all started to come back to me.
Now. This was not a first (but certainly a most dramatic). For the last week or so, something strange had been happening to me in the night. I’d wake up to go pee, sometimes with some urgency, other times not as much, but I’d go rushing to the bathroom to pee. Sometimes a dribble, sometimes a fire hose. I’d head back to bed and climb in only to discover that there was a wet spot in the bed! WTF! Truly confusing. I came to the conclusion that the effort of sitting up maybe was forcing a little out as I left the bed, and I was finding the puddle when I returned. Hmm. Or maybe I was just wetting the bed and not realizing it until I was awake enough to. THIS, though. This was a new level. I had woken up in a true puddle of piss.
Curiously, in the last week or so I’d also been noticing that even while I was awake, my body wasn’t really sending my brain a very strong signal telling me it was time to pee. Almost like I’d just have this back of the head notion that it MIGHT be time, and run to the bathroom JUST in time to avoid total disaster.
Peeing has been strange for quite some time now. First radiation. Then surgeries. Damaged nerves. All to be expected. Now add growing tumors, and all bets are off. But up until this last week it had all been manageable. Suddenly now, I was wetting the bed, AND not being able to trust that while I was awake I’d get the message in time, or at all! In the somewhat vain hope that this might be the side effect of some combination of medications that I was on, I wrote to my doc.
This was her response.
It sounds like neurogenic bladder with atonia of the bladder sphincter, which is an expected development of the sacral plexopathy resulting from pelvic tumor involvement. Unfortunately it is not a side effect of any of the medications you are taking, but rather an indication of disease progression in the pelvis.
There are no pharmacological solutions for it.
At night you can use a Texas (condom catheter) to avoid getting wet and to be able to sleep. During the day, unless you do self catheterization several times a day, to avoid allowing the bladder to fill to a level that triggers spontaneous emptying, there is not much else you can do. There are pull-ups for adults that are not as undignifying as the diapers. They are thinner and unnoticeable under your pants.
The other not so convenient solution is to have an indwelling catheter attached to a leg bag that would constantly drain the urine out of the bladder.
I wept.
Not so much because of the new practical considerations to be taken on, but because once again I was having symptoms which simply pointed to the progression of the disease. First the arm (doing worse all the time, thanks for asking), and now, a week later, my penis! Et tu?
I had a moment of feeling completely overwhelmed by the whole thing. I feel as though I’ve taken a lot on over the last 5 years (I say “I,” when obviously I should say “we.” First the we that is me and Hill.. then the we that is me and my family/close friends.. all those who are affected by these changes. Perhaps you can simply read that as implied). I’ve had to take a lot on. I’ve had to make major adjustments. In the past, though, those major adjustments, like learning to shit in a bag for instance, have come with the promise of survival! Do this, and you will probably have a normally long life. This new stuff is just the opposite. “Here you go.. here’s a sucky new thing to get used to.. AND the sucky new thing is a good sign that the disease is progressing rapidly in your body! AND the sucky new thing is likely to get worse not better”
“Oh!! Cool! Thanks!” I don’t know how to keep that up. So I wept instead.
My mother picked up some pull ups for me at the drug store. Putting one on reminded me a little of the first time I ever put on a dance belt.. Story for another time. I was in the bathroom trying to figure the fucking thing out… Hill in bed already waiting for me to come and watch our TV show. Everything about it was gross. Synthetic, bulky, poorly designed.. Not to mention, a FUCKING DIAPER!!!! I wept. I don’t even wear underwear. I sure as shit wasn’t going to wear this. I ripped it off. Weeping.
It wasn’t until the next day that I got the ray of sunshine I needed. I had told my hospice nurse that the texas/condom catheter sounded like something I’d like to try, and she had ordered some up. The whole thing had enough of a Rube Goldberg appeal to it that I couldn’t resist. The packaging alone had me grinning. I mean “Freedom Cath.” Yeeeeee haw!!!! Rebel yell. And the illustrations for how to? I can’t NOT share.
That’s the shape of things gang. I’m hoping that these signs that disease is progressing rapidly slow down a little! I could use a break, AND I’ve already got the message! “yeah! I heard! progressing. rapidly. got it.”
Night time is sorted out. It’s a little baroque, but the freedom cath works for night time. I’m still working on the right daytime solution (I’m not looking for a flood of advice here gang.. “he said ‘Flood.’ te heeee!” I’m sure that I’ll find the right solution for me). It IS a real limitation. Last night I walked the 5 blocks to the store and on the way home had to dive between a couple of parked cars to avoid wetting myself. Hardly had any warning at all. It makes a trip down to the pool hall an impossibility. Of course, I can’t feel half of my bridge hand anyway.
On a brighter note, I’m having a ball in the shop. Finding ways to get the most out of that left hand, and allowing the right hand and the machines to do the rest. I’m making a clamping fixture for making picture frames that will really be the art piece on its own. I may not even make any frames. We’ll see.
