Blogging tunes: Grateful Dead - So Many Roads Discs 2 and 3.
The setting: it's very cold, grey and cloudy outside, but to the West, the sun is peeking out below the clouds and lighting up the Upper Haight and Ashbury Heights. Here's a pic. Click it for a higher-res version.
OK, here we go... last night was one of the worst sleep nights so far. I probably woke up 10 to 12 times from 9pm to 7:30am. Seriously. Think about that for a second. How can you possibly get any real rest if you're waking up that frequently. Twice, I had soaked through my clothes (night sweats: one from fever, one just 'cause.) I don't know what to make of the other times. Sometimes I had to pee, but other times, I'd wake up for no apparent reason, check the time and say to myself, "WTF? I just went to bed 30 minutes ago." I think tonight I might ask them for a sleeping aid of some kind.
Anyway, After my second night sweats episode, it was a little after 6:00a. I'd had enough and wanted amazing thing number #1: a hot shower.
I can't describe for you the magnitude of just how wonderful showers feel. I've been trying to get one every other day, or at absolute least, every third day. I know my room probably feels warm to folks who visit, but I'm always cold these days. Even colder by the time they wrap my PICC line and I get undressed for the shower. I guess I understand why they wrap it the old fashioned way (a bag with tape on both sides), but hopefully, when they discharge me (assuming they leave the PICC line in) they'll hook me up with one of these reusable PICC line protectors.
Fortunately, the shower gets nice and hot, there's good water pressure, and there's a shower chair (looks like this) so I can just kinda sit there and bask in the warm water. Without my long hair to wash... oh, I probably didn't even post about that yet, did I? Yeah, I think I mentioned that my hair was falling out, but didn't show you Heather's handy work. Well, here you go.
Great job, Heather!
So anyway, back to the shower. Without my long hair to wash, it's really about just letting the hot water wash over and energize me. Oh I wash of course -- they give me lots of washcloths, and I have Floyd's natural bodywash -- but I take my sweet old time. I think I was in there for 25 minutes this morning. Honestly, I didn't want to get out. If I could sit under the warm water for a couple hours a day, I would.
After the shower, I felt pretty good, but was still tired so I slept til about 7:45a at which point I forced myself to get up and do a couple of laps (walking around the hospital floor). This still takes quite a bit out of me, but it helps me gauge how much energy I'm going to have for the day (errr, for the morning at least.)
Judging my energy level accurately was going to be key today because Heather was planning amazing thing #2, which is about 100x better than amazing thing #1: she was going to bring the kids to visit! Now, I hadn't seen Floyd or Orion for 2 weeks. For those of you who have young kids, I don't have to say anymore than that. For those of you without kids, take my word for it: being separated from your family for that long is one of the worst things in the world. I have a new respect for our soldiers who leave their families and go off fight -- this has nothing to do with my stance on war or anything like that, it's just about the people and what they sacrifice on a personal level.
So understand, when Heather comes to visit on her own, or others come to visit, they come to my room. If I'm feeling crappy, that's fine, I just lie in bed, but this is different. The kids don't come up here -- they're not even allowed on this floor, so I have to get disconnected from my IV, put on some "normal daddy looking clothes," get my energy up, and go down to the lobby and be superman for my boys. In fact, today, I even wore the Superman shirt that Heather's parents got me.
The visit was short, but it was amazing. I even brought Floyd his own mask so he could be like daddy. He didn't really need to wear one, but it was pretty cute. He gave me a great big hug which just made me cry like a baby. I just missed him so much. Here are some pics:
Even Orion is trying to get in on the action. Sorry little guy, I had to give your big brother the biggest squeezy hug ever.
Amazing that he actually looked at the camera for this one. Here are two more that I took of Floyd just playing around:
The whole visit probably lasted 20 minutes, which was plenty of time to tire me out. He wanted to climb on me, knock me over, etc. Rather than saying no, I just pushed my limits, and then called it quits when I had to. After the visit, I came upstairs, turned on the Flyers game (via justin.tv) and promptly fell asleep for about 90 minutes.
To my incredible wife: thank you so much for bringing them by. Let's shoot for Monday after acrosports for the next visit.
OK, quick update on my health. Got a fever again last night. Not horrible, 37.9, but a fever nonetheless. I haven't spoken with my primary oncologist in days, but one or two doctors that are part of his crew come by every day. My platelets were low, so I got a platelet transfusion today. Other than that, all the important counts seem to be moving in right direction -- which is great. I think the initial hope was that I'd be a littttttle further along than I am now. Last week, we had talked about a potential discharge date of Monday (11/29) or Tuesday (11/30). This is looking less and less probable by the day. Not a huge deal, but I do have an appointment scheduled for 12/1 at UCSF. That's now in jeopardy.
Also, starting last night, I've started to get some mild headaches. Nothing too severe, but enough that I wanted to tell the docs about it. It's possible that it's related to some of the sinus stuff I've got going on, but I dunno. They give me Tylenol which helps. I wonder if they have something to do with my waking up in the middle of the night.
OK, before i sign off, I'll post a (blurry, sorry) pic of something that will make my dad happy. Yesterday, while I was doing some stuff on the computer, I was listening to some Beethoven Piano works:
Big thanks to DAC for hooking me up with his old iPod loaded with classical music.
I will kick its ass,
P.S. GO EAGLES!