I’ll jump right in here
So there was a slight hiccup this week. We entered into the weekend and got through it pretty well. Our heroine got out three separate times, one lunch with myself and ham and cheese, the second, to the mall to get something, then Sunday out with Hannah to target to ride around on the little scooters that they apparently never charge up. So that was good. The pain seemed to be easing down a bit as well. Still taking a lot of dilaudin and they bumped up the morphine pump but everything was going fine. So monday we arrive, get blood taken, go to lunch (been a while since we have by ourselves) and headed back for a nice late afternoon dose of chemo. She still was having trouble going to the bathroom though. The doctor got the meeting with the urologist changed to tomorrow so that was good. Anyway after chemo I took her to get her hair washed and went home. While she was getting changed I looked at her shirt.
What the f is that?!!
There was a yellow stain on her shirt that went through another shirt. We looked at her side where Dwayne the drain resides and it looked like a quart of penzoil had leaked out and someone tried to clean it up with a box of tissues. So get back in the truck and head back to the temple to the ER. I dropped her off and parked the truck. Upon entering I see Elizabeth with a mask on. I also see this joint filled up like I’ve never seen it and everyone wearing masks. I by no means am a germaphobe. I have conditioned my body after several years of rum consumption to withstand pretty much anything. Some people treat their body like a temple, I treat mine like a tent. Anyway I felt like I contracted pinkeye, gangrene, and some other unspeakable disease just sitting there. No place for a cancer/chemo patient. So I called. The doctor on call told us to go home, flush the tube and hook up the bag. That as terrible as it looked, it shouldn’t be anything to worry about. To come by tomorrow and they would squeeze us in. We went in today and they fixed it. It was just blocked (thankfully) and an easy fix. The nurses were super kind as I sat in the waiting room our heroine just broke down and three of them comforted her. I know I’ll bitch a lot (earlier and later) about the confusion and other nonsense, but the nurses and a few of the doctors have been outstanding and I can’t thank them enough for their kindness and empathy.
Urology was no bueno. She went to the bathroom and still had double the urine in her than they like. The urologist told her that it could be the pump thats the problem. That they may have to take it down a notch. Which while it makes complete sense that the morphine could be deadening that nerve, I mean seriously? So the pain pump is causing problems and if we decrease it there might be pain? To quote an earlier blog, we’re chasing our tails here. If its not one thing its another and we need to do this because of this previous decision we made that didn’t really work. We’ve openly told them, we’re frustrated. Now we have another member on our “team” who is pointing fingers saying, well, go talk to them. Elizabeth wanted to see if we could get them all in a room and on the same page. I seriously doubt that would ever happen. It would be nice but it’ll never, ever happen.
So onto this episode of “What can’t Bob bitch about”. Today we have meditation rooms. Now look, I found a “meditation room” at mayo. How could I possibly bitch about a quiet room. Strap on your seatbelts kids, lets go for a ride. I found this room at the beginning of the year while wandering around during the morphine pump install. Beautiful room. Marble floors, fountain trickling by the entrance, completely quiet. Well, not completely quiet, they have a light bulb that is going bad and pinging like a drunk uncle banging on a champagne glass because he wants to make a toast at a wedding. But after a while it sort of adds to the ambiance. The first time was nice. The second time they have a piano outside and some old guy playing at random times a day. Usually he cranks up at lunch. You can hear him through the glass. When you are sitting and trying to wash away burning rage and feel a little taste of zen, the last thing you need is to sing “just the way you are” in your head. It just doesn’t work. But I got through it. Well today I had some time and I figured I’d get a quick 20 minutes. He was already playing when I walked in. Today though he had some other old geezer there singing with him. Well, hopefully he”ll be done soon I thought. Well he was but not before he channeled his inner Liberace and tickled the keys in runs up and down the ivories in a grand finale for the ages. The crowd went wild. Honestly, I’m sure he took a bow with all the applause. I was left wondering what’s next? A New Orleans big brass band? Slayer on their retirement tour?
So he was done, I focused again and went into my head. In comes this couple. Just talking. I was a little hidden behind this giant table so I assumed they just didn’t see me. I cleared my throat. The guy looked at me and quieted down just a bit. They sat down and about every few minutes or so, talked just loud enough to be annoying. I held my tongue. Until the very end, thankfully with a minute to go, The woman opens up her plastic box of a sandwich a starts eating, loudly. I grabbed my phone, walked past, gave them the stink eye, because I was at peace and didn’t want to ruin the mood, and split. They looked shocked. Like they thought it was a cafeteria or something.
Either way, its been a heck of a week. I think we’re all about at the end of our rope with this pain and frustration. Eventually its going to bubble over on one of these doctors and it wont be pretty. Like I’ve said in the past, they do a really good job for the most part. And I realize thats why the correct term is “practicing medicine” because they’re never exactly sure what they are doing. But for crying out loud for a part that was supposed to be a “game changer” it sure has, but for the worse it seems. So until next week, love you guys and blog at you later.