Rule breaking 101

Man, what a start to today. Nurse Cindy comes in for the 4:30 am stuff, pills/vitals. I am pretty sleepy still from last night's Ambien et al, but I figure I'll empty the bladder and then catch another hour. I go pee in the peepot, and this one has a warped lid, so I put it down on the toilet and I'm trying to snap that lid shut so the nurse won't be spilled on, and I can't get it shut. Ever have the steak slide across the plate when you're trying to cut it, and off go the peas and potatoes, shooting across the table? Well, off goes the urinal, sliding across the toilet and spilling all over the floor. Nothing like a urinal full of toxic pee at 4:30 am. I did the hully-gully dance fast enough to avoid any, but had to make the embarassing call to the local haz-mat team. They cleaned it up and didn't say anything. I did not get back to sleep.

Yesterday was very nice, except I didn't break rules fast enough. Cyle and Kirstin came with cookies, could be the title for a kid's book! And Cyle brought a Pirate book, yarrggh mateys, avast! Cyle is the VP of engineering at TEC where I work as Director of Operations, so we have been through the gauntlet together with the housing downturn. He and his wife are people that give me hope that the world can be made better.

The rule I didn't break soon enough was to get off the IV pole. Had I done it right, I would have got off the pole and gone to lunch with Cyle and Kirstin at the Bing Dining Room. As it was we strolled around and I showed them some of my coping spots like the gardens, but the visit was too short and somewhat frenzied by bladder madness.

After they left I asked Boss Gwen why I was on saline, and she answered that they wanted to ensure I was hydrated and getting enough nutrition. I said "Gwen, look at me, look at what I eat and how much I drink," and she agreed to ask the docs. I figured that was an answer I'd get Monday, but she came right back, couldn't get hold of the docs and unhooked me from the IV of her own accord. Awesome, no IV pole, no mask, one last day of freedom. Only regret was I hadn't asked before Cyle and Kirstin arrived.

After the daunorubicin my bladder is reduced to the size of an espresso cup, and with the IV saline going and the fact that I am only supposed to pee my toxic discharge in my own bathroom, I have limited range. My poor bladder now gives me about a 2-minute warning, max, so I plan around the bladder. I know every secret bathroom from here to Stanford Cancer Center, the ones where I can pop in and do a toxic pee in private, double flush it, and hope I don't kill anyone. It is either that or stay in my room, or wear Depends and that ain't happening for so many reasons. Poor bladder was so slammed by the red death it is shrinking up like the boys' boys out surfing the Rock in February.

I spent the rest of the afternoon strolling the grounds, making calls to ensure my sibs are taking care of my (future) bone marrow, and sitting in the gardens reading. I went over to the Stanford Cancer Center, and it was wide open and completely empty. If I was a thief I would have made off with all the art and computers etc., but the karma hit would be huge, plus I am not a thief. It struck me as wrong though. Anyway, I remember that the SCC is nearly empty on weekends, and has some very peaceful lounges with nice views and available beverage stations and private bathrooms, everything I need.

When I get done with this phase and it's time for the outpatient treatment after the BMT, SCC will be my new home away from home, with daily visits for treatments. I ran into Maura, who had just left F Ground on Thursday, and she was just coming from a treatment, the first of 48 weeks of outpatient treatments. She looked good and jazzed to be free, and gave me an image to shoot for, healing warrior.

Last night's salmon dinner was pretty good. I saved the soup, bread and applesauce for a later snack.

When I finally got back to my room, just ahead of dinner at 5:00, Gwen comes in and tells me the docs say I have to go on IV. Dang! Just one hour before Barry, my brother-in-law, will be here, and I was going to break at leat one more rule and walk around the University campus with him. He is an architect and there are some great buildings here. I should have hid, like the day of signup for first grade at St. Peter's school, it worked then. It would have been tough to hide and find Barry, because I never know which entry people are going to use when they visit.

So when Barry arrived we hung out, and then I gave him the tour of gardens and halls. He brought a bag of goodies from Dana, things I'd forgotten like shirts (!) and the amazing lost/found/lost/found Ipod. I have plenty to do; I actually went to bed thinking I had too much to do. Ridiculous. Combine 120 mg of prednisone, some OCD, a little too much coffee, and watch me spin.

Okay, it's 6:30 am, I need to work out, maybe try this Qigong exercise DVD, eat breakfast, take a shower, and reorganize the entire Fiore digital photo collection on this external hard drive. Back on the mask, but we'll see how many steps I take in my after meal walks with the IV pole.

I throw down this challenge to all of you, but specifically to Bill Myers and his hip recovery, and to Mikey and his half-marathon training - walk more miles than I do. I'll post my miles every day, and you beat it the next. I am already starting to feel the decrease in red cells, and it will get a whole lot worse, so I dare you to keep up!