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Saturday, December 29, 2012

Clap Your Hands if You Think You're in the Right Place

Blogging Tunes: Generation Soul Disco Funk (France) 160kbps CBR, MP3 Internet Radio

This will be the final update of the year, and quite possibly the last update for a long time. If you're a recent visitor, I suggest you start at the beginning, as the recent updates aren't nearly as interesting as the first two years.

Two years... almost 26 months to be more precise.  Seems crazy that I started this blog that long ago.  Back then, I was writing a couple-few times a week. It was a great way to let people know what was going on with me.  It also was a way for me to look my situation in the eye and consciously decide not only how I was going to deal with it, but also how I was going to present it to the world.  Also many AML patients have found it useful, which is fantastic.

Now blogging frequency has slowed to once every 6 or 8 weeks -- and honestly, it has become more of chore than anything else so I think it's time to stop... on one condition: things continue in the direction they are going.

The reality is, I'm on the road to being cured.  I saw Dr. Damon the week before last and he continues to be very pleased.  He was fine with the 0.3 tac, but was concerned with my lip (it's never really recovered from the April sunburn) so I might have to see a specialist if it doesn't fully heal -- hydrocortizone and Aquafor don't seem to be doing the trick.  I'm 19 months post-transplant.  The vast majority of relapses occur in the first 2.5 years, so I'm really not far away now.

My life is never going to be as "normal" as it was -- it's not about that.  The chronic GVHD will last for years (if not forever) but that's just part of the deal.  Sure I have problems with my lips, range of motion, cold hands and feet, slow healing, fatigue, etc.  And I'm probably 5x-10x more likely to develop all sorts of other crap than someone who didn't have leukemia... big whoop.  It's better than the alternative, right?  And progress continues. For example, I'm still not close to being able to extend my forearms 180 degrees when my palms are touching (so I can't do a push-up or plank) but I can get it to about 90 degrees.  That may not seem like much, but it was 60 degrees (or less) in the summer, so in a year or two?  Who knows.  I have no pain playing piano, throwing and catching a ball, shooting a basketball, typing, fill-in-the-blank.  Couldn't say that in the spring.  Maybe I'll even get to play golf again -- haven't played in years.  My favorite activity is skiing -- not sure when I'll be able to do that again... not this year, but I will do it.  I also want to bike all the way to work one day in 2013.  It's about 22 miles -- a stretch goal for sure, but I think I get there.

So, getting back to blog closure. What started out as something focused on kicking leukemia's ass has really turned into more regular life updates, pictures of the family, reports on work, etc.  There's nothing wrong with that; lots of people do it.  In fact, I have a great friend whose wife life-blogs about their family. I won't link to it, since it doesn't seem to be googleable and is probably semi-private -- you know who you are :).  Since I don't get to see them as much as I'd like these days -- they live in the city and we're up in Marin -- I can check into the blog and see what's been going on.  That's great, but it's just not for me.

I wouldn't say I'm super-active on Facebook, but I do post good pics from time to time.  So if you wanna follow that "life stuff" and we're not Facebook friends, go-ahead and add me.

I will still post concise medical updates here as I know there are readers who are predominately interested in the specifics of my recovery.  Or, if, heaven-forbid, something goes wrong, I'll post that too.  I'll probably still post pleas for contributions to upcoming Light the Night walks as well.

Barring that, my next post will probably be sometime in the Spring if I am able to make contact with my bone marrow donor.  Oh, that reminds me, one of my co-workers is actually being called to donate!  She signed up with marrow.org when she heard my story.  Check out this Chatter message I got last week.  So cool!


Anyway, here's a few more pics from Thanksgiving til now.

Floyd: "What have I done??"

Orion loving Daddy's special breakfast

Floyd loves it too.

Art table for Hanukkah!

Floyd test riding his new bike at Mike's

Cute Orion at China Camp

Floyd balancing at China Camp

Floyd biking at China Camp

Moon rising in SF outside ferry building

Moon a little higher from the ferry

SF skyline and sunset from the ferry

GG Bridge from ferry - I have the world's best commute

Moon has risen

Heather and Floyd at the BADM 12/29/12

Hope you enjoyed the adventure until now.  Let's all look forward to FEWER blog posts in 2013.

Happy New Year and big KICKS!

-jg


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