Monday, October 29, 2007

Hospital Stay: Preparation

10/29/07 - Update on today

So first, I guess the update on my current condition. Been walking around quite a bit, but I still can't handle too much strain. Dad was in town this weekend, so I was out and about with him and my sister a bit, though taking plenty of sit breaks. I went out for brunch on Sunday with some friends - I suppose one of the good things about all this is getting back in touch with old friends who I don't see too much - though man, the portions at Stacks are gi-normous. The catheter's getting to be a bit annoying, but it's not too bad when I switch to the leg bag to walk around Anyhow, all in all not feeling too bad. I've got my follow up appointment with the doc on Thursday, so I guess I'll know a bit more about the upcoming treatment plan then.


Hospital Stay: Preparation and Anticipation

I felt quite healthy in the days up to the operation, but this only amplified the surreal nature of what was, or what was possibly, about to happen. That is, to know that in a few days I might wake up without a bladder was just really bizarre. I guess the only way to prepare for it was to assume the worst, so that I might be pleasantly surprised. The trick is to not hang your hopes too much on being pleasantly surprised...

As the time to surgery drew closer, I started to feel a bit antsy. There was one day when I was just really irritable. I certainly cried a few times, but mostly I didn't feel scared or too worried. I don't know, maybe I was just in shock and so not feeling much of anything. It of course helped to have my sister and mom and other friends around, but mostly it just felt really strange. It didn't help that I was running around to sperm banks and fertility clinics in those couple days before checking in to the hospital, although I guess it kept me busy at least. I also made it a point to hang out with friends and even convinced my mom to make her world-famous Peking duck (a rare occasion, as usually she only does this on Thanksgiving and at Christmas).

I had a follow-up consultation appointment at UCSF on Wednesday (10/17/07), when I also started my clear liquid diet (apple juice, white grape juice, cranberry, water, Jello, chicken broth). Yum! My mom went a little overboard making Jello the night before, but it was well appreciated. Actually I think my sister just - 2 weeks later - threw out a couple tupperwares' worth that we never quite got through). To top it off, I was also scheduled for a PET/CT that day, which meant I wasn't able to eat the Jello or even drink anything besides water until about 3pm that day. The PET/CT combines PET, which allows you to see overly active areas in the body (like tumors), and the CT, which allows you to see anatomical structures. Luckily the PET/CT didn't show any active areas besides what was in the urinary tract area. This scan wasn't good enough to show whether things had spread to the bladder, but at least it showed that it hadn't spread anywhere else. The gist of the appointment with the docs was that though there were some subtle differences in the way that the UCSF pathologists read the biopsies compared to Stanford, nobody said surgery was not the first step...


Pokey pokey

So finally Thursday came and we checked into the hospital into the ambulatory treatment unit (ATU). I guess that's where they place pre-op patients, or at least folks who can walk around. They gave me a huge room that normally should have five patients in it, but it seemed they'd converted it to a storage room for miscellaneous stuff like a gurney, wheelchair, bookshelf, etc. and I otherwise had it all to myself. We showed up around noon and were basically sitting around for a while, with intermittent interruptions from the nurses. They sent me down to get an X-ray (in a wheelchair, I guess it's policy), took some blood samples, and poked me three times before getting an IV started. Eventually even the one they ended up starting had to be replaced (I have a huge 3-4 inch wide bruise there still). I don't know why my veins seem so troublesome to some people - the last time I was in the hospital they didn't seem to have much difficulty. Though when I went for my first CT scan in July the resident and nurse poked me 3 and 2 times respectively before getting the IV in there. I've been poked so many times for different samples that at this point it doesn't really bother me, but I sure do appreciate it when the nurse can do it quickly and on the first try.


The "stoma" nurse


At some point in the afternoon the "stoma" nurse came in to describe what my potential new pee hole was going to look/be like. Basically, when they take the bladder out, they create this replacement pouch out of part of your intestine. They cut out a section of the intestine and sew the remaining parts back together. Preserving the blood supply to the pouch, they then connect one end to the ureters, which bring urine from the kidneys to the bladder, and the other end they form into a small opening that is brought to the surface of the skin by pulling it through a small hole there. They pull that part out and then sew the edges to the skin around the hole. So you basically end up with this bright reddish circle with a hole in the center on your skin, and that's the stoma. The hole is kept closed most of the time by the muscles in that area. The weird thing about it that I didn't realize was that the stoma would be wet and mucousy. I had previously imagined it would just be a small, dry hole in the skin. I'd have to keep it covered with a bandage when wearing clothes, but otherwise there was no problem getting it wet, swimming, etc. Okay, not too bad I guess. I knew already that if they had to put one of these in I'd still be able to do all the things I normally did/could. It was just weird to have the nurse describing this to me so matter of factly, then even weirder when she took a Sharpie and drew a big dot on my abdomen where the stoma would be.


The "cocktail"

So finally all the poking and prodding had subsided (at least for the time being), and it was time for my "cocktail". Basically, because I was potentially going to have my bladder removed, they wanted to prep me as though they would need to use the intestine to create a new urine collection pouch. This of course meant that I had to make sure my system was totally cleaned out, much like you would for a colonoscopy, for those of you who may have had that lovely experience. So essentially you get to drink 4 liters of this nasty, nasty liquid that tastes like thick, salty water with (in this case) a hint of artificial pineapple flavoring. Apparently they make other flavors but this was the only one my hospital had. When you try a sip of this stuff, it's not soo bad, but when you're on your second liter or so, it gets pretty aweful. Ice helps for some reason, and chugging it a cup at a time is definitely preferable to sipping. A cheerleading/cup refilling squad is also useful for motivation. So about 20 minutes after the first cup or so, you basically start having to go to the bathroom to have diarrhea. The urgency is not so bad that you can't make it there without running, but it's not exactly a pleasant experience.
Pretty much every time I came out of the bathroom I would pace around the room glaring at the refilled cup of liquid, and my heart would sink when I saw how little of the jug I had gotten through. Slowly but surely, though, over the course of a few hours, the level started to come down, and eventually, with probably an 1/8th of the jug left, the nurse said my toilet water looked clear enough to stop. Ugh. My bowels didn't quite get the message and kept putting out stuff for a couple hours after that, but mostly it was over.

Now it was just trying to keep my mind off things and get some sleep before getting awoken at 4:30am the next morning. Through that afternoon and evening, I kept feeling thoughts creep into my head about the possibilities of the upcoming surgery. Would this be the last time I would be able to pee normally? Should I be more worried than I was? I felt like I had mentally prepared myself for what was coming, but did I really know? Was I sure I was prepared? I decided to put those thoughts out of my mind. Serena stayed over and we watched the Transformers movie (new one) on her mom's portable DVD player before going to bed. Probably a mistake to lose sleep for that, but it was definitely a good distraction.

5 comments:

Nancy said...

Hi Alex! Just letting you know that I'm reading your blog and wishing you well!

Noah said...

Hey Alex - you are a wonder. Your blog is so full of life and good humor. Keep it up!
Noah

mollysadventures said...

Hey Alex!

It is fun reading your blog!! Are you catching up on all your reading yet :) ?? I have some books if you need to borrow!

I like the Sperm Bank post...it was fun to read..and educational for someone who has never been to one!

Molly

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