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Tuesday, May 17, 2011

Music Has Magic; That Stuff of Syncopation

Blogging Tunes: Pink Floyd - Delicate Sound of Thunder / Pulse

Well, I said I wouldn't let this much time elapse between blog posts, but I did it again.  I know I have the laptop, but I guess I really like to sit at my computer desk where I can multi-task, check in on work stuff, have the multi-monitor setup and all of that. You would think it's not that hard to get a few hours of uninterrupted time where your body cooperates, but it's surprisingly challenging.

So, where we last left things, I was about to walk to the San Rafael Social Security office.  Not the most efficient place, but we got what we needed, and a nice surprise in the form of a poster.... OH MY!


Coincidentally, I received my "Notice of Award" from the Social Security Administration in yesterday's mail. A word to the wise: don't go on long-term disability if you can avoid it.  I'm not going to get into the details, but it's such an administrative nightmare to deal with the benefits.  Don't get me wrong, I'm happy that the benefits exists, but I wish the system were simpler.  Here are two posts discussing the issue in more detail: (post 1 | post 2).

So what's been happening... Heather's mom stayed with us for more than a week after she returned with Floyd and then flew home to Massachusetts on Saturday. Diana, it is so wonderful to have you around -- you are always welcome!  The adjustment period was a little tough for Floyd, but he's been getting a lot better (fewer tantrums, less whining, more cuddly.)

So this is our first week post-BMT with just the four of us -- i.e. no additional help.  What I'm finding is that if I can get to sleep really early -- like 9pm -- and nap when Floyd naps (on the days he's home) then I can actually get up at 7am and help Heather with the kids.  The last couple mornings, I got Floyd in the shower while Heather dealt with the O-man.  So far so good.

That said, my energy-level hasn't really increased much since my last post. I felt like I was on an upward trend, but it seems to have leveled off -- which is apparently normal.  The extreme fatigue period can last several months after hospital release.  It's been about 5 weeks.  That puts as at Day +48.  The docs continue to be psyched with my progress, and we may even reduce the clinic visits to once-a-week soon.  Weight is still hanging around in the 148-149 range -- at least I appear to be stabilized.  Appetite is still weak and taste buds aren't right, but I'm hanging in there.  Kitkats, Ice Cream, pasta, oatmeal, you name it.  Still can't gain tho.

I'm still getting IV Magnesium every day, but the dosage was recently reduced from 4 grams to 3 grams.  If I can get to a low enough dose to take it orally, they can remove my Hickman Line.  The only issue there is that oral Mag can cause all kinds of digestive issues -- now you know what's in Milk of Magnesia -- and right now, it's hard enough for me to get all my pills down, so we'll see. The only new complication is a mild case of peripheral neuropathy.  It's not bad now... just a little burny/tingly feeling on my feet when I walk.  Hopefully it'll go away on its own -- but there's no guarantee.

These last couple days were actually pretty productive.  I was able to get a little (shhhh!) work done, and I've been cleaning up my iTunes Library.  I wound up with a ton of duplicates (long story), so I've been deleting 'em and cleaning metadata as I go.

We've also had some fun times around the house and the neighborhood.  About a week ago, this lovely creature was scampering around our backyard (click for hi-rez)


Here's another:


She hung around for a while but eventually was able to get through the fence and rejoin her mama.  Ridiculously cute.

Last week, a guy came by to tune the piano for the first time.  After six months, it really needed it.  He did an amazing job -- it sounds better than when I first played it. He also made some adjustment that tightened up the action on the keys. It really plays great.  Thanks, Laurie for the recommendation.  Need a piano tuner?  Check out http://www.davidlovepianos.com/


On a totally unrelated note, I've been watching some ST:TNG reruns. Low def shows take up no DVR space, so I'm recording everything they show on SyFy.  I think there's about 65 episodes saved.  In the last couple weeks, we've watched Yesterday's Enterprise, Clues, First Contact, Captain's Holiday, and Time's Arrow.  Can't wait til it records The Inner Light, which is, by far, my favorite TNG episode ever.

In other news, absolutely HUGE shout out to Salesforce's own Vijay Swamidass who made a super cool photo mosaic of me using Salesforce Chatter profile pics.  Remember this pic I posted back in February before the transplant when my hair started growing back?


Well, check out this version!  (Click for hi-rez)

(click me! click me!)

This image was entitled "SFDC behind jg" and was created with metapixel -- an open source photo mosaic generator.  There are links to more photo mosaics there.  Thanks again, Vijay.  Very cool.

Last but not least, a blog post wouldn't be complete without a couple family pics, so here are two:

(Floyd making a cupcake)

(Floyd being a love bug with H and Orion)

So that's it for now.  More of the same.  Slow and steady improvement, daily walks, a little work around the house, paperwork, and lots and lots of rest.  Speaking of which, time for a nap.

Thanks to everyone who continues to follow my story.  Come visit when the rain stops.  Much love to all.

I will kick its ass,

-jg

16 comments:

  1. So great to hear you are doing so well. I think the little fawn is a good sign. Love and miss you all! XOXO

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  2. Great to hear you're hanging in there. Not a day goes by that we don't think about you. Let us know if we can help in any way. Heather W.

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  3. I also love The Inner Light episode of TNG, John. I remember the first time I saw it and how it made me feel.

    Live long and prosper!

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  4. happy to hear that you are doing well John! That fawn is amazing! Look forward to a visit with Beth and reed someday soon. I'll be in touch to schedule. keep KIA bro!

    - Tyler

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  5. Great post, John! Looking forward to seeing you.

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  6. Sweet post. Thinking about all of you...xoxo

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  7. Good to read the news, John!
    Very nice post!
    M&M

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  8. @Kat: whaddya mean "looking good"? That pic was from 3+ months ago, broseph. I look like doo-doo these days. :)

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  9. Been running around like crazy but continue to keep tabs on you. Will touch base offline. Good to see progress continue!

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  10. mwahhhh! I don't think you look like doo-doo. lmm.

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  11. This is all great news buddy, really glad to hear it. All my best to Heather and the boys, and keep your spirits up- avoiding Phillies at-bats would probably be a good idea in that department!

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  12. omg -- that fawn!
    such sweetness; what a gift.

    i'm sure the continuing low energy is frustrating and i'm going to envision your taste buds coming back VERY SOON, but overall it sounds like you're truckin'.

    love & light,
    amanda

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  13. Great update, John. Wonderful to hear you're getting stronger and all is good with the docs. Keep kickin' it!

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