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Tuesday, June 14, 2011

Summer's Here and the Time is Right

Blogging Tunes: soma.fm: Groove Salad

Woo, Blogger just added a mobile view setting, so those of you viewing on mobile devices should get a much better experience starting now.

Once again, I have been remiss in my blogging duties, but never fear, all is well.  My clinic visits are down to once a week (Mondays) and yesterday, I got to see the head honcho himself, Dr. Damon.  Like the others who have been seeing me (my nurse practitioner and the other doctors), Dr. Damon agrees that I'm doing as well as can possibly be expected.  This is, of course, fantastic news, but it's also bizarre to me since I'm still really tired most of the time.  It's like... how I can be doing so well, if I feel this tired?

What I learned yesterday is: 1) People doing worse than I am feel even crappier than I'm feeling. 2) The fatigue is much more related to the drugs I'm on than anything else -- particularly, the immuno-suppressive (tacrolimus). The "tac" makes me tired and it also depletes my magnesium.  The IV magnesium also makes me tired.  So the key to my energy returning is getting off these drugs.  The key to getting off the drugs is a clean bone marrow biopsy which is scheduled for Monday June 27th.  That's less than two weeks away!

If the biopsy looks good, and we're all expecting it to, Dr. Damon said that he will start tapering the tacrolimus.  That's when some interesting stuff could happen -- essentially, my new immune system will get a longer leash.  He thinks we can take a somewhat aggressive approach and shoot to have me completely off the tac within 3 months of the biopsy as long as everything continues to go smoothly.  That bodes well for my "fall" return to work.

But, fall is months away.  It's summertime here in Marin:

(San Rafael 5 day)

In San Francisco, not so much:

(San Francisco 5 day)

So I'm trying to enjoy some time outside, without getting too much sun exposure.  Here's a picture of the chair I'm sitting in as I blog this.  The sun umbrella and the redwoods keep the yard nice and cool.

(little green dude sitting in my seat)

So much has happened in the last couple weeks, I can't possibly post it all here.  Heather's mom was here for 9 or 10 days from early June up through Heather's birthday (6/11).  It's so nice to have her around the house to help with the kids and all the day to day stuff.  She even gave us a night to ourselves so Heather and I could go out for her birthday.  This was my first "dinner out" post-transplant.  It was pretty awesome and pretty surreal at the same time.  We went to the Buckeye Roadhouse in Mill Valley.  Great place.  Can't wait to go back when I have a full appetite and normal taste buds.

Here's a picture of beautiful Heather on our big night out:


But The Buckeye wasn't the only phat dinner last week.  On Thursday, Laura and Naomi took Heather out, so Gramma and I had a feast of our own, right at home!  Here's a pic of the ladies looking... happy. :)


And here's Gramma's little feast:

(mmmmm.... salllllty)

Some things just taste right even with my screwed up taste buds and corned beef & cabbage is one of them.  Gramma, that was some the best cb&c I've ever had.  Please come back and make it again!

We also took a couple nice family walks when Gramma was in town.  Here, we are fixin' for a walk into town (town is downtown San Rafael):

(mommy, gramma, floyd, and orion - 4 Phillies caps!)

(another with daddy - click for hi-res)

(Floyd getting buckled in and Orion lookin super-cute)

Last weekend, Benji and Emma (one of Benji's daughters) came to visit.  Benji brought an amazing print of the salesforce chatter pics mosaic that Vijay made.  I like these canvas prints.  Among other things, they're earthquake proof.  Thanks, Vijay!

(click for hi-res version)

I also took my first bike ride since the transplant last week.  I rode across the 101 overpass and then up the route 5 bike path for about a mile.  It was a slow climb and it absolutely crushed me.


When I got to the top of the hill, I figured rather than go down the other side, I better just turn around.


I gotta find a way to get more rides and walks in... it's the only way to start to rebuild my strength.  But I also have to take it easy.  Some days I'm just not up to it -- today's a bit warm.  Not gonna bike when it's 85 and sunny -- not yet, anyway.

On Sunday morning, Rob and Heather Woolen (and their son Jack) came by with some fresh watermelon and blueberries from the Farmer's Market, and in the afternoon, Sarah, Eyan, Brandon, Shannon, and all the kiddos came over.  I got a nap in between the visits. Minus all the freak-outs and meltdowns, it was a great time. :)  Unforch, I didn't take any pics.

Oh, on the techie front, after more than a week of experiments, I have begrudgingly given up on trying to run the Squeeze Sever on my NAS.  Even though it's the right way to do it, the NAS just doesn't have the horsepower.  With 256Mb of RAM, how can I expect it to manage a 500Gb library?  So installed the PC version of 7.5.4, disabled my virus detection, replaced the scanner.exe file with the 7.5.3 version, and now all is finally good.  The PC version running on XP on my 5 year old desktop is 10x faster than the sparc version.  C'est la vie.

I also had a very strange problem with my Windows 7 lappie reading from my NAS.  I could browse directors just fine, but if I tried to a simple read, it would hang for minutes.  Turned out there was a problem with the default MTU size on Windows 7 as described here.  How in the world did people troubleshoot problems before google and the Internet?

Last but not least, hats off to Jonny "Dallas" Katzen whose Mavs finally won a championship.  Better the Mavs than the Cowboys.  Jon sent me this pic of himself from the Kezar Sunday night.  Enjoy your moment, Kat.


I'm sure I'm forgetting lots of good stuff, but that's about all I got for now.

I will kick its ass,

-jg

5 comments:

  1. Thanks for the update jagu. Glad to hear things are progressing well. All the best for the upcoming biopsy.

    Dr. Damon, eh? I'm guessing you already asked him if he's related to Johnny.

    All well here in India. Still with CS but not sure for how much longer. We'll see.

    Think about you constantly and always hoping for the best. Thanks for the Phish update btw and my best to H and the family.

    dknee

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  2. Great to hear from you John - looking forward to hearing that "all clear" from the biopsy! Happy birthday to Heather, say 'hi' to Floyd, and tell Orion 'uh oh' for me. He'll know what I mean :)

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  3. Wow! Great news that your biopsy is coming up so soon! Here's to a clean report.. and a quick taper off those drugs! :) Hopefully you'll be off 'em in time to get some late summer / fall biking in as your strength improves. :) Keep kickin' it!

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  4. Thanks for updates John! We think about you every day and are always happy to see another blog. :)

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  5. oooh -- two days till that biopsy! i'll be thinking good thoughts your way.

    glad to hear you're doing well, even if that means we get fewer blog updates. i'll take that trade-off any day!

    keep kickin'...

    love & light,
    amanda

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