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Saturday, July 30, 2011

Hello to Scott... So Glad to See You. Hello to Mary... So Glad to See You Too

Blogging tunes: none (in UC surgery waiting room and forgot my etymotics)

Quick health update and then we'll get to the fun stuff.  My appointment with my team this morning was good. We're gonna completely stop the IV Magnesium, which means we can finally remove my Hickman line. That will get scheduled for sometime next week or the week after. Apparently, they just kinda pull it out. Not really looking forward to the experience, but the result will be great -- I will finally be de-borgified.

My energy level continues to increase. I am taking longer walks, bike rides (more on this below) and sleeping less. I feel pretty confident that I'll be able to return to work soon. Based on my energy level this coming week (and how I do at the two Phillies@Giants games next weekend), I'll talk to Benji and HR, and make a decision about the actual date. Even before my transplant, I had September 1st in my sites. That's exactly 5 months from transplant and 4 months ahead of schedule. I'm going to do everything in my power to make that happen.

As I type this, I'm sitting in the pre-op waiting area at 505 Parnassus -- waiting for my lipthotripsy procedure (to bust up my kidney stone.)  I doubt I'll be able to finish the blog before I get called for pre-op prep, but I'll write as much as I can. It is friggin freezing outside. Probably 55 degrees with 20mph wind. No, I do not miss the city at all.

Shifting gears, two of my oldest college friends, Scott and Mary Beth, visited us yesterday afternoon and evening. Scott and I met at UMass Freshman Orientation, and wound up rooming together Freshman year. He introduced me to the Grateful Dead in the fall of '88 (and took me to my first show: Foxboro '89) and my life hasn't beem the same since. :) Mary Beth lived on our floor (in Pierpont) and so began their relationship. Hard to believe that was over 20 years ago.

As usual, it was gorgeous in San Rafael, so we loaded up the boys and walked (strolled) into town for the weekly Thursday night Farmer's Market on 4th Street. In addition to tons of fresh produce (of which we bought none) there were all kinds of food stalls, live bands, merchandise, and amusements for the kids like this big bouncy house:

Floyd in the bouncy house (shot through the mesh wall)

It was fun for five minutes ($2) but Floyd could not get enough of this huge air filled slide. He probably did it 15 times -- good thing it was only $0.50 a slide.

Wheeeee!

Heather took a great video of one of his descents:

Floyd Slides Down video (HD)

Stupidly, we didn't got any pics of all of us, but here's one of Scott and Floyd from the ice cream place:

Scottie (in his jgwkia cap) and Floyd

After we got the kids to bed, Mary and Heather went to Target while Scottie and I hung out and caught up. When the ladies got back, Heather convinced me to play some songs on the piano:

Strange Design*
Back on the Train
Standing on the Moon#


*Heather's favorite slow Phish song these days
#yeP! played this at Scott's wedding back in 1995

*** RED ALERT! Bloggis interruptus! It's lipthotripsy time. More tomorrow ***

Saturday July 30th
Blogging Tunes: Charlie Hunter - Natty Dread; MMW - Shack Man

Big thanks to Rob Woollen for driving me home from UC last night (sweet ride, dude!) Man, am I groggy this morning. The procedure was an apparent success, but the general anesthetic really slams me -- even the next day.  I'm very tired, a little sore in the kidney area, and have a bit of a sore throat -- I guess they put a tube down there. I don't remember anything. I think I was out just from the sedative they gave me.

Now I just need to take Flowmax and hope to pass the fragments without complications.

Anyway, back to the pictures and videos: check out this little video of Floyd whacking the whiffle ball. Right now it's all arms -- i.e. he's not stepping into it and getting the full body power. But this is a damn good swing if I do say so myself. He's a regular Hunter Pence, this kid!

Liner back to the mound - view in 720 full screen

In other news, Tuesday's piano set at Little Arrows was fun.  I got there a little earlier than usual, so I played for a good 70 minutes or so.


Hello Song#
Gumbo
Monkey & The Engineer >
Free Four
Two Little Kitty Cats#
Ramble on Rose*
Scarlet Begonias >
Light >
Fire On The Mountain
Us and Them >
Any Colour You Like >
Brain Damage* >
Eclipse
Looks Like Rain*
Goodbye Song#

*Kari on backup vocals
#From Music Together songbook 

Speaking of two little kitty cats, we adopted a young cat (Bandit) from the Milo Foundation and are fostering his mom (Skye.) We're definitely keeping him and hope to keep her if they get along. In case you're wondering, they were already named when we got them. Floyd was bummed after Elvis died, and we really thought it would be nice for the family to have a pet. A dog would be way too much work at this point, so a couple cats sounded like the right move. When you have two cats that get along (a male and female is usually best -- like Elvis and Sonora: pic1 | pic2) it can bring some sweet, loving energy into the house.

Skye and Bandit are chilling in their kennel right now. Lemme see if I can get a pic...

OK, that was an adventure. I did manage to get a couple pics and a video, but it took me another 20 minutes to catch 'em both and get 'em back in their kennel.

Skye - mellow mom


Bandit - the energy ball

The garoffice, Floyd and Orion's "new" rooms, and two cats -- the place is really coming together.  Now that the office is completely contained in the garage, we were finally able to move the crib out of Floyd's room and into the other room. We also got rid of the changing/table dresser. Floyd's room seems huge, and Orion has his own space. Pics soon.

Quick thoughts on my Wednesday bike ride. I rode about 5 miles and felt about 10x better after it vs. my first bike ride back in June. I rode up the #5 bike path, exited to Lincoln Ave at the top of the hill, and rode down the hill to Ranch Road up to the base of the driveway of house that a friend of mine may purchase.

Baytree road in Los Rachitos, San Rafael

It was a killer hill just to get up there and another on to the actual house -- I chose not to ride up.

Big arse hill driveway

Oh, remember the Camp Doodles discussion from the Lieby story?  Here's a sign:

Maybe Floyd will go here in a few years?

The weather is so nice for walking and biking. Lest there's any doubt about how crappy SF summers are compared to SR (unless you live in the Mission, Potrero or South Beach) here are your current ten day forecasts:

Click to see the numbers: highs around 14 degrees higher in SR -- lows the same.
And yes, I'm doing this to try to convince some friends of ours to move up here -- you know who you are. :)

One last thing to mention before I go lie down -- no, I'm not going to talk about Pence, Rodgers-Cromartie, or Asomugha -- you can read all about that on philly.com. Instead, I want to share a quick story about a pretty inspirational man we met while dropping off the dry cleaning earlier this week. We had a ton of stuff to drop off, and while Heather was talking to the woman at the store, this older gentleman who was waiting saw my cap and commented on the upcoming Phils/Giants series -- Giants fans who want to gloat about the series win in Philly would do well to wait a week (if not a couple months) til we at least see what happens in SF.

Long story short, the guy mentioned that he grew up in Cleveland (and was a Tribe/Browns fan) but had lived in Bay Area (and now Marin) for 60 years. I said something like, "you must have moved when you were little, how are you still a fan of those teams?"  He said, that he moved when he was in his 20s.  I was floored. He said, "I'm in my 80s, young man," or some such. Now this guy looked like he was in his 60s -- and he was in great shape. Turns out he plays tennis, bikes, the whole nine.

Given the state of health of some folks I know in their 80s, it was really cool to talk to a sharp, friendly, guy in his 80s who seemed to have 20 or 30 years in the tank. His secret "exercise and moderation." Doesn't seem all that hard. Really encouraging story.

OK, I lied -- that wasn't the last thing. This series of Orion pics is:

Yes, I'm trying to be cute

Blaaaaaaa!

This stuff isn't staying on my tray for long.

Its ass is kicked,

-jg

Saturday, July 23, 2011

At Least I'm Enjoyin' the Ride

Blogging tunes: SD@PHI on second monitor via local Slingbox

Absolutely insane week -- probably the craziest week since I've been home.  No, nothing happened with me -- things continue to progress quite nicely. In fact, my Nurse Practitioner reduced my Tacrolimus again yesterday. So now I'm down to 0.5 twice a day. That's half of what it was 4 weeks ago, so we're on the right track.

So what happened this week? Heather got an absolutely epic migraine on Tuesday -- worst one since well before Floyd was born. She was basically horizontal and out of it from Tuesday morning through Wednesday evening when I decided to take her to the ER. Breaking the pain/nausea cycle and getting another full day+ of rest allowed her to get back to normal by Friday night.

The thing is, we really didn't plan for anything like this, so it was a huge challenge for me to take care of the kids and take care of her. Admittedly, I didn't do the best job: I was tired, stressed out, and downright grumpy much of the time, but we got through it with the help of our neighbors who put the kids to bed on Wednesday and stayed at the house while we were at Marin General.

At least there was some humor to the ER visit. When we finally got seen (it was a zoo there, so it took a while to get a bed), there was this total wastoid, stoner dude in the bed next to us. We couldn't see him, because of the curtain, but we could hear him, and man, I wish I voice-recorded the whole hour we were there with him. It didn't occur to me to do so until later, and I did manage to get a few soundbytes -- which I stitched together and slightly level corrected for your listening pleasure, here -- but the real gem of the story is why he was there, and how his injury happened.

Even when we left, I couldn't get a picture (privacy issues) but listen to the clip so you can get a feel for his speaking voice/manner, then imagine him telling this story. Oh, and this guy is apparently on more pain killers than Rush Limbaugh used to be.  I think he said 40mg of oxycodone.  That's 4x what I took for serious pain (and 8x what I took for mild pain) during my chemo!

Essentially, he was in for this nasty burn on his leg which wasn't healing properly or something. When the doctor asked how he got it, he explained that he keeps a lava lamp near his bed and that he rolls around a lot when he sleeps and that he fried his leg on the lava lamp. The doctor suggested that his leg must have been in contact with the lamp for quite some time to get a burn like that and asked why he didn't just wake up or pull his leg away. He claimed that, for some reason he couldn't explain, he had been up for 2+ days previously and crashed hard so he probably didn't feel it. Seriously, dude? The doctor went on to ask about how that was possible, was he on any drugs, etc. That's when he got into his whole oxycodone (and whatever else) diatribe.

Look, especially after what I've been through, I'm not one to make fun of someone else's misfortune (except maybe the Mets') but you had to hear this guy. You could script a better movie character. When his buddy brought him dinner, our hero exuberantly told him about how he just discovered that he could access the internet on this phone. Again, seriously? I mean, really? Ya just figured that out, guy? He talked about so many other things -- I wish I could remember more. I was barely able to hold it together I was laughing so much.

Another highlight of the week was my weekly gig at Little Arrows pre-school. Since I had the clinic appointment on Friday, I did Tuesday this week. Here's the setlist:

Hello Song
Dirt Made My Lunch >
Alaska
Sugaree >
Ocelot
Black Peter >
My Friend, My Friend
Runaway Jim >
Loving Cup
Goodbye Song

I realize I don't talk about my clinic visits much, but they're pretty intense. They draw a boatload of blood and do all kinds of tests in near real-time. Here's a pic of what they use and the tubes they fill:

Saline, heparin, and blood tubes 

And here's the nurse hooking up to my Hickman line -- at least they don't have to prick me while I still have my line:

Blood draw
After my clinic visit, I had a couple hours to kill before my second appointment of the day -- the pre-consult for the lithotripsy next Friday. Since I needed to get a walk in, I headed down to Kezar to grab some lunch and catch up with Cyril. He treated me to a plate of wings and a beer. I learned later in the evening that my system is not quite ready for a full plate of wings -- will spare the details, but I thoroughly enjoyed them and my second beer since transplant.

Best wings in the city - Kezar Pub on Stanyan

On a fun note, the weather has been fantastic in San Rafael and Floyd is loving his little hopscotch water toy.

Floyd - splat!

Floyd drink

That's it for now. Gonna head out with the family. Getting stronger every day.

Its ass is getting a whoopin',

-jg

Monday, July 18, 2011

Dad Diddly (gar)-Office

Blogging tunes: none.

No tunes right now because the studio monitors in the garoffice are disconnected. Alex is coming by today to fix/redo the East shelves (where the speakers reside.) I suppose I could put on headphones, but I like the sound of the outside, and the faint, low din of the 101 traffic in the background. Plus, I'm installing some stuff, rebooting, snacking, switching machines, etc. Sometimes silence really is golden. Uh oh, the washing machine just kicked into the spin cycle -- so much for silence.

My energy continues to improve very slowly, but seemingly, surely. I can't feel the changes day-to-day (or even week to week sometimes), but it's definitely happening. Yesterday was one of the fullest days I've had in a while. I went with Heather and the kids to swimming class, then we came home and I got my IV Mag -- no nap, I just watched the British Open and relaxed. Then we went to the Discovery Museum for a couple hours with the kiddos. It was absolutely gorgeous there (as opposed to Saturday when it was super foggy)

Rock and Bridge (Sunday)

Rock and ... ?  (Saturday)

The Discovery Museum is a ton of fun for them, and very tiring for me. But no rest for the weary! When we got back we had a dinner guest -- note: dinner guests who bring dinner (especially wonderfully smoked BBQ'd ribs and homemade BBQ sauce) are always welcome. Thanks for the killer ribs, Ev. I'm actually eating some of the chicken now. Yum! But of course, before dinner I had to pitch wiffleball to Floyd for a good 45 minutes. It's so awesome having the yard on the East side of the house -- the house acts as natural shade in the afternoon and creates the perfect shaded batting area. He's really starting to crush the ball.

By the time we got the kids to bed and started eating if was around 8:30p (which is late when ya have kids and you're recovering from a BMT.) Oh, here's a good one of Floyd at the top of this big ship they have in the outdoor play area at the Discovery Museum.

Ahoy, maties!

By 10pm I was completely exhausted and ready for bed but really I wanted to finish the Phillies game (on DVR.) I was speedin' through it just fine, but then things got all wacky in the 8th, so I had to slow down a little. I think I got to bed at around 11p.

The big question, of course, is... how would I feel this morning after such a full day? Before I go back to work, I need to be able to do 5 full days in a row -- that seems like 5 marathons to me right now -- and sustain that indefinitely. Answer about how I feel today? I'm tired. I still got up with Heather and the kids and then got out for a nice morning walk (more on that later!) but I was really dragging. I'm still beat and may even nap after I post this. Until I can sustain yesterday's pace for a full week, I think it would be a mistake to return to work. I'm still targeting September, which seemed extremely aggressive to my team a few months ago, but now seems achievable if everything continues to go perfectly.

Not really much else to update on the health front. My visit last week was uneventful, and they didn't change any of my meds. I don't talk about the oral meds much because I'm so used to them, but it's definitely a chore to take (including the mag-oxide tablets) 13 pills a day. Sometimes I just look at the pill box and have a gag reflex -- hard to get 'em down. Yeesh.

After my UCSF visit on Friday, I met Beeks for lunch at Kezar. Yes, I had a beer, and no, I didn't have wings (though I had one of Dave's.) I'm just not into chicken right now. Beef and pork are so much more appealing proteins -- I can't explain it -- so I got a burger. I figured bottled beer is generally safer than the tap, so I got a Corona. Thanks for lunch, Brown (yeah, he's got three names.)

First beer since transplant

The other cool thing about Friday was my weekly piano gig at Floyd's pre-school.  For those keeping track, here's the setlist:

Hello Song
Fearless >
Backwards Down the Number Line
Puff the Magic Dragon (1)(2) >
Possum
Touch of Grey (3)
Sunrise (2)
The Crystal Ship
Runaway Jim >
Russian Lullaby
Here Comes Sunshine (4)
Goodbye Song


(1) Requested previous week by a kid named "Bass"
(2) Kari on lead vocals
(3) Kari's husband on acoustic guitar
(4) Kari on backup vocals

Tripp is probably gonna call me all sorts of inappropriate names, but I think Sunrise is actually a really nice song, and it's great to play on piano. Kari (one of the Guides at Floyd's school) did a great job singing. I can't (and won't ever try to) sing that song.

This Friday and next Friday I have major appointments at UC, the latter for shock-wave lithotripsy for that pesky kidney stone :( so I'll be moving Piano day to Tuesday. Gotta learn somethin' new for tomorrow.  Hmmmm....

On Saturday afternoon, I had a chance to catch up (phone/skype) with a great friend -- love ya, LY -- while I was working on the garoffice. I will take a moment here to get on my soapbox.

< soapbox >
If you have people that are special to you, people with which you haven't connected in a long time, make some time to connect. Check in with your old friends. See how they are doing. Skype with them, so you can see them. Life moves pretty fast.
</ soapbox>

Later in the afternoon, jmomo came up to visit for a couple hours -- great to see you buddy. Heather and the kids were out, so we just got to hang and catch up. Later, Floyd went on a jumping spree, jumping from the chair to his bed. I think we need to take him to the Junior Bouncy House at the House of Air.

Ready? Set.

JUMP!

OK, so the walk today... I usually walk by myself, headphones on, up around the Dominican campus -- it's really beautiful up there. Well, I got a little of late start this morning, so Heather and Orion were able to walk with me.  After a nice slow walk through the campus, we came back out to Grand Ave. As we crossed a street, we saw a sign for "Camp Doodles" right on the corner. Avid readers will remember an earlier post that mentioned why that name is cool to us.  Anyway, as I'm pulling out my phone to take a pic of the Camp Doodles sign, this dude about my age in a nice sports car happens to stop at the intersection right in front of me. As fate(?) would have it, I was wearing my Utley jersey, and the dude said, "Yeah, Phillies!" I nodded and replied something like, "We're gonna do it this year." Then he says something like, "Man, I played for Phillies for 10 years."  I was like, "What?!?" and I looked closer, but I didn't recognize him. A car was behind him at this point, so he turned onto Grand and pulled over, got out his car and introduced himself as Mike Lieberthal.

The Lieby I remember was quite a bit leaner, but I guess that's what happens when you stop playing pro-ball for a few years. I still had to check the web when we got home to make sure it was really him and not some dude messin' with me. Based on some later pics, like this one with the Dodgers, it looks like it was really him. We just talked a little Phillies, baseball in general, the Philly media, steroids, kids, fatherhood, etc. for like 20 or 25 minutes. He was super friendly and chatty. I guess it's not every day that a former Phillie sees a guy in a Phillies jersey walking with his wife and baby in San Rafael. Apparently he's splitting some time up here (taking Masters courses at Dominican) and in SoCal. Heather got a decent pic of Mike, me, and Orion with the camera phone. Fun stuff.

Lieby, me, and Orion

Aight, I'll post one more pic of the kiddos and then I'm out. It's not every day Floyd and Orion will play together, but it doesn't get much better than this:

"Whaddya say we paint each-uddah-up."

Its ass is kicked into next week,

-jg

Saturday, July 9, 2011

How 'Bout a Goldfish?

Blogging tunes: ATL@PHI on FOX via Slingbox on second monitor

Lots of good news and some not-so-great news to report on this edition of jgwkia. The Phish fans in the house may have an idea of one of the pieces of bad news from the blog title. The rest of you will have to read on.

Before I get to the obligatory health update, I will take a moment to report that this is the first blog entry from the new "garoffice". yeP!, the portion of the garage that we converted to the office is pretty much done -- enough for me to set up the basics, at least.

Blog prep on left monitor; Phils via Slingbox on right

Network, etc. (for now)

Over the top of the monitors, you can see a slice of the backyard. Since there's a huge window along the East wall, we'll get natural light, fresh air, and view of the redwoods. As you can see in the bottom pic (both pics, actually) there are wires everywhere -- not good. We need to tweak a few things and drill a bunch more holes in the desk and the shelves so that we can keep the wires out of sight. I'll keep you posted.

Speaking of fresh air, it is going to be picture perfect in San Rafael for the next 10 days at least.

San Rafael - mid to high 70s; cool lows

San Fran? A little chilly for my tastes.

San Francisco: same lows, but highs barely crackin' 60

Yeah, yeah, I know, I know, "But SF rules! You're out in nowhere-ville now, jg. Besides, I like the fog!" Whatever. We lived there 11 years, remember? Can't imagine going back now that we've experienced Marin.

OK, on to the health update. Basically, things are continuing to go well. The flow-cytometry etc. all looks good. I'm in full remission and, and as expected, my doctors have reduced my Tacrolimus. It's only a small reduction -- instead of taking 1 in the morning and 1 at night, I take 0.5 in the morning and 1 at night. I guess that's actually a pretty big reduction percentage-wise. The point of reducing the Tac is so that my new immune system can start to get a little more active and so we can see how well it does with my body.

Keep in mind that the remission doesn't really have much to do with the transplant. In fact, I was in remission before the transplant. It's the intense chemo that has kept the leukemia away. Now, as long as the new immune system plays nice with my body, if leukemia comes back, the new immune system will just gobble it up like any other thing-that's-not-supposed-to-be-there.

I haven't seen a noticeable energy increase yet (specifically due to Tac reduction, I mean) but I do feel like the energy has been up over the last couple weeks.  I'm still losing weight -- I'm down to 144 which is not good -- but I feel like the appetite is coming back a little, so hopefully we can turn that around.

I am managing to take a walk every day. On days when Floyd doesn't have school, sometimes he'll ride when I walk. He's getting pretty confident on his little bike:

Truckin' - Floyd style

The one not-so-good thing to report is... well, remember that kidney stone from when I was about to be released from the hospital? Well, even though the pain went away and the folks on my team thought that I probably passed it -- believe me, I knew I hadn't -- the urologist I saw told me that it had basically moved back up into the kidney. Soooo, we're gonna have to try to break it up with shock waves. The tentative date for the procedure is July 29th.

On a lighter note, the piano gig at Floyd's pre-school is going really well. The kids really have a good time, and the owner and the head guide absolutely love it. Since a few folks have asked, I'll start posting the setlists (if I remember to write them down).  Yesterday's was:

Hello Song >
The Thin Ice >
Shakedown Street >
Possum
The Kids' Song
Bathtub Gin
Trick of the Tail
Box of Rain
Loser
Back on the Train
Goodbye Song

Here are a couple pics from the first time I played there a few weeks ago:

The kids sittin' around while I play

A little later, kids doing their own thing, but still listening

Wow, I still don't have any hair in those pics. It actually has grown quite a bit in the last couple weeks. There's definitely something psychological about seeing hair on my head, having to buzz my face/beard, etc. When I'm totally hairless, it's like, "Yup, that's a cancer patient in the mirror." But the more my hair grows, the further away I am from chemo; and that feels great.

Me - Sat July 9, 2011 - 4:10p PT
OK, the Phils just stranded the bases-loaded in the bottom of the tenth. I have a feeling that's going to translate to a loss. This is about how I felt when Mayberry grounded out just now:

Orion loves (getting his) yogurt (everywhere) and being loud

OK, before I sign off, a bit of very sad news. Yesterday morning, while I was starting to set up the garoffice, Heather found our cat, Elvis, lying dead in the yard.  He was a really sweet cat who used to sleep with us every night in San Francisco (unless we kicked him out of bed... ya know...)  He was tolerant of Floyd, but once Orion came around, he started being a little distant. Once we moved to Marin, it was pretty much over (as far as his being our cat.) He never really adjusted to life in San Rafael... rarely coming in the house, roaming the neighborhood for days at a time. It didn't help that the previous owners had a dog.  He also had a chronic ear problem. No matter what we did or which Vet we saw -- and we tried everything -- we couldn't cure him. I don't think that's what did him in -- he probably ate something poisonous. Sigh. The whole thing is just very sad. We went from 3 cats to none in a matter of a couple years. Oy, and to top it off, Brian McCann just hit a two-run HR in TOP11.

Floyd was at school and Orion was napping, so we dug a grave and buried him in a sheet with the food and water that was left in his bowl. Now we just have to figure out what to tell Floyd about it. I think we're going to tell him that Elvis went to kitty heaven so he could be with Jerry. :(

Well, I don't want to end on a sour note. So, here's a great pic of Floyd concentrating on his Play-Doh at school.

Why do I always look so serious?

It barely has any ass left,

-jg