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Sunday, December 16, 2012

Good Times, and Faces That Remind Me

Blogging Tunes: Curious George on Netflix (well, the kids are watching -- I'm just typing)

I really have no excuse for not blogging.  It seems that the more my life approaches normal, the less I blog.  Normal doesn't mean all the GVHD symptoms have gone away, nor does it mean that I'm off my meds or biking to the ferry every day -- I actually haven't biked in over a month. :|  Normal just means I'm working like crazy, trying to maximize time with my family, deepening my relationship with organizations like NCCN and LLS, attending as many holiday parties as I can, and -- at the same time -- trying to get enough rest so I can stay healthy.

The truth is, I seem to have unintentionally gotten into the pattern of only blogging when I have UCSF appointments.  Since I haven't seen my doctor in nearly two months... well, that just sounds like an excuse.  I was supposed to see Dr. Damon this week, but my appointment got rescheduled for 12/20 (my brother's 47th birthday!) so I'll see him next week. I'm expecting the report (all my blood counts, etc.) to be good.  In fact, based on how I've been feeling, I decided to reduce my Tac from .35mg to .3mg last week.  We'll see what he says about that.  No signs of additional GVHD, but no signs of the (expected) energy boost either.  I am tired -- pretty much all the time.

My weight isn't back to normal, but my waist seems to be.  I think I just need to make up the muscle somehow.  The suit I bought for Patrick Landers' memorial barely fits now.  The pants are way tight.  A few more pounds and I won't be able to wear them.  The days of eating whatever I want, as much as I want, whenever I want, are over.  And since I haven't been biking or swimming much (read: at all) well, you see where this is going.  The only exercise I'm really getting is walking across the parking lot from my car to the ferry, and the once or twice a day I walk up 7 flights of stairs to my cube on 7-Landmark at Salesforce.  Since they opened the East/West stairs in the Landmark building, I've been walking up at least once a day (usually with one of my Marin ferry buddies -- you know who you are!)  By about the 5th floor, I really start to feel it.  I guess it's better than nothing.

Above, I mentioned NCCN and LLS.  Lots of good stuff going on.  Last month, I was invited to sit on my second NCCN panel in Washington, D.C. -- the Patient Advocacy Summit.  I meet the most amazing people at these panels.  e.g. Ellen Tauscher.  This woman has seen and done it all, and kicked a nasty form of cancer to boot.  It's not that I don't work with amazing people every day -- I do -- they're just all computer weenies. :)  Stepping outside of the Silicon Valley bubble really helps put things into perspective. Doctors, politicians, cancer survivors, health care providers... when I do get to see folks like this day to day? Hopefully, they will want me for a panel at the flagship conference this March in Florida.

On the LLS front, earlier this month, two Salesforce execs and I had breakfast with John Walter (CEO of the LLS.)  Mr. Walter wanted to thank us for our Light the Night effort -- did you see the final total?

Talk about blowing the number out!

and discuss the possibility of the LLS using Salesforce for some of their CRM/app needs.  Would be so cool to get them onto Salesforce for everything.  That LLS total is a little bit inflated since the $25k bike grant we got (not really related to Light the Night) got applied to my fundraising page. All this really means is that we have to raise even more next year.  We're shooting for $200k.  The teams in all the other cities will have a lot more time to prepare/fundraise next year, so I'm expecting great things.

On the family front... how can I possibly provide a meaningful update when two months have passed?  Since I last posted, we've done Halloween, Thanksgiving, Hanukkah attended some great holiday parties.. we've even gone the movies (the new James Bond!)  Oh, and the Eagles have won exactly one football game.  I guess the big news around the house for me is that just before our Halloween party, we wired the barkyard with a second pair of speakers.  So now we have the original two that are affixed to the house under the eaves, and two more in-ground speakers strategically placed in the yard.  Now, whenever we're out back the music sounds fantastic.  We also added another two portable music players (Squeezebox radios) -- one for the Kitchen and one for the boys room.  Now there are 5 players all around the house for perfectly synchronized music.  Pretty cool.

Flipping back through pics from the last couple months, here are some that stand out:

Rainbow over the bay - from my office window
Halloween party
Halloween party II - RIP skinny Joe
Halloween insde
Halloween inside II
Heather and Floyd for Halloween
Great pic of Floyd
China Camp hike - 10 mins from my house!
Kids' Thanksgiving table (@Gina/Valons)
Kids' table w/ food!


I have a bunch more to post, but Blogger is all screwed up now and won't let me add pics where I want them.  So I'll just post this for now and add more pics with the next update.

Kickalicous,

-jg

1 comment:

  1. Can't believe I didn't see your blog until today! Great blog; great pics!! :)

    ReplyDelete