Friday, October 22, 2010

Home at last

They released me from Mayo yesterday, disconnecting me over the course of the day from the IVs and getting my discharge paperwork together. I've said it before, but the Mayo folks are top-notch, as you'd imagine. The nurses, docs, everyone was very kind and helpful.

We headed out at about 2:30, with Ray and Gabriel driving down from the city to get my Mom and myself. The world moves by dizzyingly fast after just a couple of days in a bed. The light was too bright and i found myself fascinated by everything, but also tired out by it as well. who would think that a 1.5 hour car ride would exhaust me so much? I crashed immediately when I got home.

It was nice stepping back into my own home, which I had (brilliantly, I think) cleaned up completely before I left, doing all of the laundry and dishes, etc. My dog is still with a friend, partially because I'm not totally ready to take care of her, and also because she scraped her leg when at her foster mom's house this past weekend and has bandages of her own :(. So we're both healing. It will be about a week before I get her back. I hope she's doing okay.

I am struggling with the opiates that they sent me home with. I don't like the idea of being on them for a week or two, and I don't like the side effects (dizziness, spaciness, dry mouth, etc.) but they are the only thing that really kills the pain. The catheter (i know: gross) is my main source of pain right now, more than the incision site which is surprisingly not very tender.

Catheter Fun

p.s. if you're squeamish or something, you might want to skip this. But since I have bladder cancer my life has been all about pee-related stuff for the last few months. I guess I'm used to it, and I figure that 10% of the people out there might want to know more about it, so here goes. And I hear that there are other people in the world that need to pee also, so maybe we should all just get over it. ;)

The catheter, or "foley" is a soft, flexible blue silicone tube that is inserted into the wee-wee and is held in place by a small silicone balloon inside the bladder that is filled with saline. Anyone ever see the movie Hot Tub Time Machine? Its forgettable, but there is one scene where one of the characters is in the hospital and is catheterized, and he yanks the catheter out of himself, breaking the balloon, and leaves the hospital. Having had a catheter in before (and having one in right now) I cannot imagine the pain that this would cause in real life. Mostly, its just an uncomfortable, sickening tugging feeling deep inside your body that is and area that we're not used to feeling anything. Bladder spasms are part of the post-bladder-surgical experience, and feel like you have to pee in the worst way imaginable, causing pain so intense that my normally stoic countenance is reduced to uncontrollable exclamations that the neighbors might be able to hear. The bladder spasm drug is an opiate-based drug that mostly controls these, so I'm taking it only when needed. I'd like to be taking nothing but Tylenol right now, but its just not practical.

In the hospital, the (female) nurses were mystified that my catheter was so sensitive to me. Every tiny tremor in the line felt like a rough piece of wood was being put in places that guys generally don't want rough pieces of wood. Or anything, for that matter. This pain was due to 2 reasons: I just had bladder biopsies last friday, so they had gone in through the urethra with tools of some sort (I don't think I actually want to know). The other reason is that I'm younger than most of the urological surgery patients by 30 years or so. Dr Hunter said that if I was 80 I wouldn't mind it so much, but the 43 year olds feel more and so complain more.

The (male) tech from urology training that was showing me how to take care of the catheter kept tapping the hose and I would wince and tell him it was really sensitive. "Well, it shouldn't be." he said, acting like I was being high-maintenence. If he had tapped it just one more time I would have made him explain the process from the far side of the room. I don't know if he's ever had a catheter in, but he was certainly at least 20 years older than me. I think it should be required in his line of work to walk around with one for a day.

So, I'm home-bound, shuffling from room to room, for most of two weeks. I can only hope that it gets better but I'm not able to sleep without painkillers yet.

I have many distractions, many offers of help. No dog, sadly. But this will all be getting much more normal in about 11 days, when I get the catheter out on election day.


Anonymous said...

Well, I could offer you a cat who would make your life a living hell by demanding to be let out all day -- but that probably wouldn't be much help. Seriously, it's good that you are home and mending. Also, it's good to know that if I ever have a catheter, I won't feel a thing because I'm 31 years older than you. Hey, how about a cat?


emily said...

welcome home! i'm sorry you're not enjoying the drugs, but i'm really glad you've got 'em and they do what they're supposed to do. someone should bring kaia for a visit.

thanks for the lurid details! i'm in your estimated 10% that loves TMI.

i know two people who've pulled out foley catheters: one in her 80s and on so much pain medicine she didn't know what she'd done, and one who was young and immediately post-partum. she couldn't get the nurses to understand/acknowledge how much it hurt and give her something for the pain (i'm betting because she's native american and they assumed this was drug-seeking behavior, grr), so she just ripped it out. she demonstrated the facial expression that went with this act of rebellion. oy. if i thought she was badass before, now i know exactly how badass.

Anonymous said...

Squimish response alert!*********
I wish I did not understand what you are going through with respect to catheters, but I do. I go through urethral dialation every 6-8 months (since I was 16). I have a suggestion and I don't know if this will be helpful as the female system is a bit different, but the only way I survive the pain of urethral dialation is the 48 hours of Pyridium (phenazopyridine) that my urologist proscribes post dialation. It basically numbs sensation in the bladder and urethra and makes one pee orange.

Anonymous said...

I hate catheters more than anything! And I think they are less ouchy for girls than boys. I came out of anesthesia early once, while they were removing my catheter and I thought I would die. Yuck. However, the Pyridium really really helps. If I remember correctly it's the same stuff as uristat, which you can get over the counter, though I would call your urologist to make sure it's okay. Nope, I just checked, uristat has a different active ingredient, but maybe call and ask anyway. I'll pick some up for you if the doc says it would work. -Rachael

Wendy said...

Welcome home!

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