OK, I know it's been a long time since I've blogged. Looking back, it's the longest drought between posts since the inception of jgwkia.com. I'll try to be better about writing.
So first thing's first -- my condition: the most important thing to report is that the recovery is progressing well. I am unbelievably tired/fatigued all the time (hence the lack of blogging) but the doctors are happy with my progress. The kidney stone is still with me, but we've been able to manage the pain and it seems to have moved to a less annoying place.
Now, before we go any further with updates about me, let's stop for a moment and rejoice in the Game 7 beat-down the Flyers put on the Sabres. Few things move me as much as seeing Lauren Hart and (the late great) Kate Smith sing God Bless America before a home Flyers playoff game, especially when the boys come through with a performance like they did last night. If you've never seen it, check out this youtube video. It's very cool the way they mix in the old footage of Kate. Here's a still. See Kate up on the big screen?
Lauren's good, but no one sang it like Kate. LET'S GO FLYERS!
OK, back to me. Today is day +28 (I think) and as I mentioned, things are going well. I'm not going to mention any of the bad things that aren't happening, because mentioning such things only has the potential to give them life -- see The Law of Attraction. But I will share the good: based on my counts, the engraftment appears to have been very successful. My counts seem solid -- I haven't needed a single transfusion since I left the hospital. My team was a little concerned about my platelet count Monday, but they think it's low because of all the ibuprofen I was taking (to help with the kidney stone pain.) So we've backed off the ibuprofen and are back to the oxy/dilaudid for pain (as needed) and hopefully my platelet count will look better tomorrow -- I go to UCSF for labs/counts every Monday and Thursday.
Think about what this means... they annihilated my entire immune system and all of my marrow, then they gave me 5 billion cells that somehow found their way into my bones and started creating new red and white blood cells. How insane is that?
I can't possibly recount all that's happened since I've been home, but I'll try to give you a flavor of what the new normal is and share a few highlights. First of all, including naps, I'm sleeping upwards of 11 hours a day. When I'm not asleep, I'm resting most of the time. Today is the first day that I've actually felt like using the laptop. Usually, I'm resting in bed with the iPad and/or watching sports -- if you're gonna be laid up, this is a pretty darn good time of year sports-wise. I can't remember an NHL quarterfinals with more game sevens.
As of a couple days ago, I'm trying to get a walk in every morning -- this is much harder than it sounds. It's much easier to stay in bed, but I have to force myself up and force myself to walk. After a short walk around the block, I'm ready for a nap. Nuts, huh? In the afternoon I get a bag of IV magnesium. Heather has become a real pro at hooking the IV up to my line, which, if you didn't know is a permanent-ish cord that goes directly into my jugular, comes out of my chest and has three separate lines for IVs:
You can see the cord here, but I'll spare you the visual of the lines and anything further down on my body.
Floyd is back in Massachusetts with his Gramma -- we miss him, but while I'm so exhausted, things are a bit easier around here with just Orion. I got to spend about a week with him before they went East and the time was just precious. We played lots of piano -- well, I played, and he sang with me -- and we busted out some of the classic games. Candyland, anyone?
Last weekend, my good friends Mike and Lou (and Mike's son) visited, helped Heather a ton in the garage/yard, looked after Orion, and watched lots of hockey with me. Lou even got me all set with a new dual band wireless router which really improved wireless performance in the house. On Sunday, we Skyped with Floyd and Gramma -- the ol' lappie (driving the HDTV) was killin' it on the new network. You can see the webcam sitting on the left speaker under the TV. Click for larger pic.
One thing that continues to be a pretty major issue is eating. It's just hard. My appetite is still down and my taste buds are a little shot. Nothing is appealing to me. In my head, lots of things are appetizing -- I dream of prime rib with horsie sauce -- but when you put most savory stuff in front of me, I just can't eat it. Mike and Lou got me a cute present which pokes fun at my taste bud sitch. Thanks, guys :)
Two things I'm able to stomach are soup and salad. Heather made a great salad last night. It was one of the biggest (and most nutritious) meals I've eaten since I got home. Eggs and avocado. Yum!
One last thing before I go back to the hockey game. I've been catching up with some old friends (by phone) over the last couple weeks and it's been incredible. LY: I loved our conversation and look forward to the next one. Dougie Doodles: we need to chat soon. If anyone else wants to chat voice -- MicroL? -- just drop me a line and let's figure out a time. 4p or 5p my time is usually pretty good (and tends to work for East Coast folks). Not on Flyers nights, of course.
I will kick its ass,