What's in a day?

Well, I didn't really know what to write about today. Since I basically spend my time waiting (for cells to grow) and trying to eat, I didn't have anything specific on my mind. So, I was going to give everyone a rest, then I thought, nah, I'll get something down. I tried to remind myself that in the end this is something "I" will hopefully have to look back on. I'm just going to give a quick update on condition, then describe a little about my routines and surroundings. I have gotten numerous emails asking; "What do you do all day?" "What is your room like?" Since I didn't have any real plan for writing, I thought I would just answer these two questions. So, kind of a simple, and maybe a bit boring subject, but everyday can't feel like Disneyland.

I feel pretty good. I do a lot in the morning, then get a bit tired, lay low in the early afternoon, then usually get another wind around 5:00. No new white blood cell growth yet. As it has been, food is still going down slowly. I am still on the IV nutrition, so at least my weight is back over 150 pounds. I felt like I was wasting away earlier last week. My body is still chewing up platelets. They were very low today,so I got another round. Nausea is almost non-existent, so that is really nice. The problem is that nothing looks good and I feel really full if I eat so much as an almond. Also, my taste sensors are wierd. When I first was admitted, I was excited because they wanted you to drink bottled water. I loved it, gulped it down by the bottle, and thought, what a luxury. Now, I can't even take a sip of the same water. To me, and how weird is this, water tastes like dirt. Taste buds are a bit wacky. I ate some cheddar cheese tonight and I swear it tasted like eggs. Luckily I like eggs, so I actually enjoyed it. They tell me this is all chemo related. Most things will return to normal and a few things will remain different. The biggie for me is NO problems with MS symtoms and no neutropenic fevers...yet. They keep reminding me that only about 20% of people will make it throught unscathed by a fever, so we'll see, maybe I'm a "20%er."

Ok, how about a room layout real quick. I've had emails referring to, "How's prison going?" I think my room is a bit bigger than a prison cell, at least I hope it is. Either way, at least it is private, no sharing a bunk with Bubba. It's 14x11 ft with a nice big bathroom. The room has a sink, mirror and counter area. The bathroom has a shower. And, it's cool because I don't believe it's a low-flow showerhead. And, I'll tell ya, I love the high-flow showerhead. I still remember the high-flow showerhead on our honeymoon in Jamaica. I believe that's the last one I've gotten to enjoy until now. Who would have thought I would have had to have a stem-cell transplant to once again feel the joy of a high-flow showerhead. I probably could have gotten myself one on eBay for $20. Come to think of it, maybe I'll look into that when I get home - just don't tell Mayor Nickels. Oops, sorry, got a bit off track there. Quickly, also have a comfy chair with ottoman, TV, VCR, bedside cabinet, overbed table, and of course, a bed.

How about a quick rundown on what my day's like. I've gotten into a routine that I like because it keeps things moving, but also, and this is very important, attempts to not get my day/night rhythm all screwed up. I usually awake by 5 am, turn on KING FM, stare at the celing for a couple of hours (sometime I doze off again), then get up around 7 am. I brush my teeth, very gently. I refrain from shaving because I try and leave that so I'll have something to look forward to later in the day. I go on a walk. I try and do 4 each day. The floors basically a triangle shape, so you just go around and around. You know, kind of like that tiger you see at the zoo. From each end of the floor there are views of Husky stadium, the Cascade Mts, and Lake Washington. So, that's actully nice, and I'll do some light stretching and gaze out at all the people going about their daily activities. Then, I usually hang out in the chair for a couple of hours. Usually I am reading, listening to books on tape, or watching TV while I get some sort of medication or blood product infused. When "infusion time" is done, I get unhooked from my IV lines for an hour. I get in the shower for about a 1/2 hour - aaaaahhhhhh. I love the shower. They have a rule that you MUST shower EVERYDAY and use two washclothes. Most of the in-hospital infections are from bacteria on your own body - isn't that weird. After the shower I get another nice walk in, without having to push along IV poles. By this time, I'm usually pretty tired, so I hit the bed (freshly made with new linens everyday) and rest for a couple of hours after getting re-attached to my IV pole. Hopefully there's a football or basketball game on to pass the time because I'm not a 'napper' and also want to make sure I sleep at night. Afterwards, I hope for maybe a short visit from someone, or I'll talk on the phone or on Skype. The next few hours are just a juggling of walks, sitting in chair, reading, or anything else I can do to pass the time. I try to get into bed by 8:30 pm, I get medications at 9 and 10 pm, vital signs and blood draw at midnight, Lipids (basically fat through the IV) get started at 3 am, then, vital signs at 5 am. So, you can see why I'm usually up by 5 am and also how getting sleep can be a challenge. I guess nobody comes to the hospital for sleep. I guess I'm lucky in that I've never needed very much sleep, about six hours usually does me fine.

Anyway, sorry, that was way to long. I was planning on a quick 'run down' on my day. I'll stop now...my bad. Talk to all later. Hopefully I'll have something more interesting to say tomorrow. Mike