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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

Tuesday, October 16, 2012

All the Cops in the Donut Shops say

Blogging Tunes: soma.fm Groove Salad

As of this morning, we are 92% of the way to our $100k goal for Salesforce HQ to raise $100k for the Leukemia & Lymphoma Society's Light the Night Walk.

So close!

The San Francisco walk is this Thursday, October 18th in Union Square in San Francisco. Festivities start at 5pm and the walk begins at 7pm.  If you want to join our team or still wish to donate you still can via these links:

  • San Francisco team page (join us!)
  • My page (I have raised over $21k - my goal is $25k)
  • Lunch with Marc contest (sfdc HQ/SM employees, please see the Light the Night Chatter group in the 62 org for details)

There are a few other Bay Area Walks (info here) and hundreds of Walks all over the US. Wanna walk in your city next year?  Go for it!

Championing this effort has been an incredible experience.  It's been really cool to see everyone rally for such a good cause.  I hope to see some of you out there this Thursday. And don't fret Giants fans, there will be a big screen in Union Square to watch the game during the pre-walk festivities.

Anyway, no real update for me wrt my health, so I guess that's good.  My appointments are down to every six weeks (were: twice a week; once a week; every two weeks; every three weeks; once a month; and now every six weeks.)  Still on Tac, Acyclovir, Fluconisole, Gleevec, and Septra for meds, but can hopefully start tapering soon.  I haven't weighed myself recently, but some of my pants are getting snug.  I think the days of "eat whatever I want, whenever I want, as much as I want" are over. Range-of-motion seems to be increasing ever-so-slightly.

One noteworthy item: I've been riding my bike to the ferry more often.  Twice a week last week and probably twice a week this week.  Also, since they opened the stairs in Landmark, I've been walking up to the 7th floor (from the lobby) at least once a day.  Feels pretty good to get the (non-cancerous blood) flowing.

And of course, a blog entry wouldn't be complete without one picture.  Here's one from a couple week's ago at Brandon's place.  We actually do get a bit of an autumn season in San Rafael:

Floyd, Havana, Dawson, and Orion play in the leaves
Kickin It Tigers Style,

-jg



Tuesday, September 18, 2012

I Removed the Force Within

Blogging Tunes: soma.fm - Groove Salad

Dreamforce 2012 is here!  This time last year I was just returning to work after several months of recovery from my stem-cell marrow transplant. I think I attended one keynote, saw some friends, and headed back to Marin to sleep.

Click for a free keynote/expo pass - or watch online on Facebook!

Not this year!  While I'm still not 100% (will I ever be?) I'm about 10x better than last year.  So I'm looking forward to all the keynotes, the gala on Wednesday night, delivering my Session on the Lifecycle of a Salesforce Bug (Friday 9:00a Moscone West 2022), and most of all, meeting and chatting with all of our customers.  If you want to connect, chatter me in the Dreamforce org, come to my Session, or msg me @eviljg.

My blog posts seem to be as frequent as my doctor visits these days -- translated: fewer posts.  Dr. Damon said (last week) that he doesn't want to see me for 6 weeks (was 4.)  With a successful trip to Barcelona and Dublin under my belt and my physical issues not getting worse (not getting better either, but that's ok), he felt that I was really on the right track.  Great news.  He also swapped out of my meds and reduce its dosage. So health-wise, things are going extremely well.

Also, the crack team of UCSF lab technicians, much to my surprise, told me that I am not firing blanks (as Damon and others said I would) so now Heather and I have to be careful not to have an "oops."  I can't decide if this is good or bad.

Instead of posting a bunch of pics (see my facebook page/timeline for some recents), I will simply use this platform to evangelize for this year's Light the Night walk.

Miranda Cosgrove - LLS National Ambassador

If you live/work in San Francisco, I urge you to join us and walk, or even start your own team of walkers.  To join a Salesforce team or donate to a team or individual, go to our Light the Night page.  To sponsor me individually, visit my page.  For information on creating a team for your company or family/friends, check out the ways to participate page.

Last week in San Francisco at the Dreamforce employee briefing, Marc Benioff got behind this effort and challenged Salesforce HQ to get involved.

Marc and jg talking about Light the Night

We still have a long way to go, but with everyone's generosity, I know we can reach our goal!

Let's get to $100k!

OK, here's *one* picture from a Labor Day hike with the Woollens.  As Floyd noticed from the shadow, Orion actually is actually in the air.

Might as well... JUMP! (click for hi-res)

Kicking it like David Akers' 63 yard field goal (no, I am not a Niners fan -- Go Iggles!)

-jg

Wednesday, August 15, 2012

Will You Wear White, Gilly Jenkins?

Blogging Tunes: The Howard Stern Show - September 15, 2010 (yes, I'm two years behind)

This entry is not mine, it's the story of my co-worker, Gilly Jenkins who has been battling Hodgkins Lymphoma for two years.  She's gone through a lot more sh*t than I have, and is one hell of a fighter.  She is an inspiration for me and for us all.

In my last post, I challenged you all to support the LLS and get involved in this year Light the Night walk.  If my story wasn't enough to move you, maybe her's will.  Here it is in her own words:

______________________________________________________________________

Gilly and her daughter - October, 2011

My name is Gilly Jenkins and I work in the sales team for Salesforce in the UK. As well as working for the best company in the cloud, I'm a wife and the mother of a son aged ten and a daughter who's only four but seems to have been born a teenager.

I love swimming and used to regularly swim one hundred lengths of the pool at my health club - and running around the forest that surrounds my home in the beautiful Hertfordshire countryside

I've always considered myself to be fit and healthy so imagine my surprise when, approximately two years ago, I was diagnosed with stage II Hodgkins Lymphoma.  

I was assured that 95% of patients recover from this form of cancer. The cure, so I was told would be a six month course of chemotherapy

After the treatment the signs were good, my PET scan was clear. But unfortunately the cancer returned with a vengeance within a couple of months. 

The consultants needed to reduce the size of the cancer so that I could have an allogenic (donor) stem cell transplant as soon as possible and the process started in September 2011. Over the next five months I had four chemotherapy regimes.

Each course of chemotherapy meant a stay in hospital away from my family and each time I was told that the odds of sucess were high.  But, I was always in the small percentile and all four failed to get me to a stage where I could have that vital transplant. 


My favorite pic of Gilly: Proud and Strong - Feb 2012

The last chance was to try a drug called Brentuximab which isn't widely available in the UKbecause it hasn't been approved by NICE - our equivalent to the FDA. The clinical trials in the UK were looking positive but because the treatment didn't have the NICE approval, our medical insurers would not fund it.  

Brentuximab is a leading edge drug and is incredibly expensive. Because of my illness it had been a long time since I had earned the big commission payments that my family had grown used to. We would find the money somehow (I'm worth it!).  And this would mean selling our home or months of fundraising

Fortunately, we didn't have to sell the house. Marc Benioff, our CEO, most unexpectedly and very generously offered to pay for my treatment. (see related article.)

I've not met Mr Benioff in person yet.  But I read that he has the body of a bear and the mind of a fox.  I would add to that by saying he also has the soul of an angel because Brentuximab turned out to be my wonder drug.  

By March 2012 my cancer was in remission and I could have a stem cell transplant from a unrelated donor who had been found the previous November

Before the transplant I was told I had a one in four chance of dying which is kind of scary. I was advised to plan for the best and prepare for the worst, which involved getting my will up to date and writing letters to my children to remind them just how much I love them.

The transplant involves a six week stay in hospital. The first week was for "conditioning" which is an ultra high dose of chemotherapy. The day of the transplant is called Day Zero and for such an important procedure, it's a bit of an anti-climax. You lie in bed and have a painless infusion of peach coloured fluid that you hope will save your life. More gruelling is the following weeks when your body battles wi the introduction of someone else's DNA and the accompanying drugs.

On Day 100 I had a PET scan and it was clear!  That doesn't mean its all over but it is a very good step in the right direction.  I will be scanned for the next 5 years snd if there is no reappearance after eighteen months, I will be very happy. I have been warned that the cancer can always come back  and as a result of all the chemotherapy I've had , I will always have a higher risk of developing other forms of cancer but for now I would just like to get to the eighteen month mark.  

Anyway, it's now August 2012 and my road to recovery is going OK but it is three steps forward and two steps back.  I have very low blood counts which make me neutroplenic.  To boost my counts sky high doses of steroids have been added to my daily cocktail of drugs and medicine.  The consultants monitor my condition closely in a bid to find out the cause of the low blood counts and address it.  

My immune system is very low and consequently I have a high risk of infection so I have to avoid crowded oplaces, public transport and anyone with coughs, colds, fever etc.  A common cold could have serious side effects for me and I have been admitted several times since being  "released" :(

Not that I've got one but, I wouldn't wish this on my worst enemy. When your being treated for cancer you have a lot of time for contemplation. I have a strong and determined personality and I am completely focused on "Kicking Cancer's Arse".  I'm alive and truly grateful to have the complete support of a loving family, a dedicated medical team, the best drug treatment, a generous donor and what's more, I'm employed by a great company.  So, maybe it's best that cancer picked on me.  

I'm far from being cured  and every day I am completely exhausted but I'm very happy to be here and feel 100 % positive. I  hope to feel back to my normal self and full of energy soon and i look forward to going back to Salesforce and giving Marc Benioff a really big bear hug!


Gilly and her family - Feb 2012

I'm supporting Light the Night for all the people who need their own wonder drug.  As my story proves not all the drugs work for all patients so, it's absolutely essential that we continue to fund research to help them find a cure.


______________________________________________________________________

We now return you to your regularly scheduled ass kicking.

-jg
 

Tuesday, August 7, 2012

Here Comes Johnny Singin' Oldies, Goldies


Blogging Tunes: TV on the Radio - Dear Science

Preamble: if you're only going to skim this, please scroll to the bottom for the most important part of this post about this year's Light the Night Walk.

Scroll down for info on the 2012 Light the Night Walk

I guess it's kind of pathetic that my primary means of discovering new(er) music is investigating Phish covers. I guess I still don't really get Pandora (let alone Spotify.)  Anyway, for whatever reason, Phish recently started playing a song called Golden Age.  I sensed at once that it wasn't an original, but after listening a couple times, I realized I had no clue what it was.  Now I'm sure that several readers of this blog (ejsphi and Matty Nabib to name two) are gonna be all, "jg, how do you not know about this album?"  Alas, I'm listening to TVotR's "Dear Science" for the first time as I write this (on the Larkspur ferry on the way home from work -- the sun reflecting off the water and the Golden Gate bridge to the West.) [follow up before posting: ironically, this was about the same time as the explosions started in Richmond.]

Two tracks in, it's quite strange, but enjoyable.  Unique instrumentation and arrangements.  These guys have a pretty original sound -- that's a plus for me, and a primary reason I still love bands like Air and The B-52s. Can't say I love this yet, but so far it's ok.

Music has been top of mind recently as I attended Phil Lesh's new club not once, but twice, in the last two weeks.

Left to Right: Fake Jerry, Stanley Jordan, Phil Lesh - 7/27/2012

Phil with Yonder Mountain String Band - 8/4/2012


I can't believe it took me that long to check this place out.  It is literally an 18 minute walk from my house -- yes, I timed it -- and I can see good music there, pretty much whenever I want.  Yet another perk of living in San Rafael.  The place is just amazing -- it's so small and the sound is perfect.  Get there 10 minutes before show time and you can get a spot right up front.  The best thing?  All tickets are Will Call, which essentially destroys any possibility of a secondary market.  Brilliant.  Personal goal: go there once a month for the next several years.  Want to join me for a show?  Keep your eye on the event calendar and get in touch!

This Friday I'm going to Outside Lands (thanks to Salesforce for a free VIP pass!) Very psyched to see Beck and Neil Young.  I've also heard good things about Fitz and the Tantrums.  Here's the Friday lineup.

We're also gearing up for the San Francisco Phish shows at the Bill Graham Auditorium next weekend.  Looks like I'm only going to Friday and Saturday (both with Heather, Friday with Floyd too).  Was planning on Sunday, but since we're on a plane at 7am Monday morning, I think I'm going to skip.

On to the medical update.  No real change at my last appointment with Dr. Damon.  The GVHD doesn't seem to be getting any worse -- I can't really tell if it's getting better, but it's definitely not worse -- which is good.  Now I think I just need to push into the pain a little stretch out my fingers, wrists, arms, etc.  I've been biking to the ferry once a week, but haven't gotten into the pool as much as I'd like.  Next visit isn't after I return from Europe (going for a week vacation and a week to work -- the aforementioned flight.)

The kids are having a great summer and are finally starting to get along a bit better.  Here are a few pics from Lemos Farm in Half Moon Bay where we celebrated Saanvi Chawla's third birthday last Saturday.  The place is awesome for kids.  Check out the website.

Floyd at 44"
Orion at 37"

Orion looking adorable

Orion the future heart-breaker
Floyd riding a pony

Orion riding a pony

Silly mommy and daddy

Floyd is really getting into hitting (baseball, not Orion) and we got him his first aluminum bat a couple weeks ago.  Here's a 7 second video of him getting a hold of one at a nice field at Dominican.



Heather is also really getting into some awesome gardening and landscaping projects.  Here's a preview of part of the stone path to the front door.  My wife is the greatest!

Side path from daddy's spot in the driveway (in progress)

OK, the important part -- now we'll see how strong my readership really is, or whether people stopped paying close attention when it became clear that I was going to live. :)  I am on a Mission and I need your help.  Last year, with your support, we raised over $60k for the Leukemia & Lymphoma Society via the San Francisco Light the Night walk.  This year, my Mission is to lead Salesforce.com to raise even more funds -- the goal?  $100,000.  The walk is on Thursday, October 18, 2012 in Union Square.  It is family-friendly 2 mile, flat walk.  Here's a 60-second PSA:



There are so many ways to help -- I'm very confident that everyone reading this can participate in one of the following 4 ways:
  1. Walk with us!  Sign up to join the San Francisco Salesforce team.  You do not have to be a Salesforce employee to walk with us.  Here is the sign-up form.  Heather, Floyd, Orion, and I will be doing the walk again this year -- well, Orion will probably stroll.  Once you sign up, you'll get a customizable page like mine, and you can raise money too.
  2. Start your own SF team!  Do you work in San Francisco?  Want to get your company involved?  Building a team and fundraising is easy with the help of the LLS.  Here's some info on how you can start your team, or you can email nicole.chapman(at)lls[dot]org.
  3. Walk in your city!  Don't live in SF?  No problem.  There are walks in dozens of major cities around the US.  Find a walk near you and you can experience the amazingness that is Light the Night (and raise money too.)
  4. Support me by donating!  Here's my Light the Night page where you can donate online.  Donating just takes a few clicks and is tax deductible!  Every little bit helps.  Thanks for helping me meet my personal goal of $25,000 and helping Salesforce.com raise $100,000.
For more information about the Light the Night walk, and how to get involved, visit the Ways to Participate page.

I walk (and kick) because somebody's life depends on it.

-jg

Sunday, July 1, 2012

Stepped Upon a Log

Blogging Tunes: Phish Portsmouth, VA 6/20/12

Back in the mid-90s, some Phish fan started this idea: "Operation Every Show" - here's a thread about it. The idea was that somehow, some way, tapers and friends of tapers would organize to make every show available to everyone.  Lots of snail mailing DATs around, tape trees, and all kinds of crazy logistics were involved.

Well, fast forward 15 years and each (new) show is now available for download within hours its completion.  I only get to see 3 shows a tour?  No problem.  I get all the shows, listen to them, in order, at my pace, and it's almost like I'm doing the tour.  If some wild moment happens, like they play Dog Log or people suck at tucking, it's all over Youtube so you can see it too.  Technology rules.

Anyhoooo, so this is going to be a good post.  Not just because of the awesome trip back East to see family and Phish, but because of the latest news from the Doctor.

I saw Dr. Damon on Thursday for my regular every-four-weeks checkup.  In addition to the usual vitals, height/weight, blood draw, count check, this visit also had my 12-month vaccines on the docket. 5 shots: all boosters for Polio, HepB, Hib,Tdap, PCV13. As I type this, the soreness in my arms has finally subsided.

Dr. Damon was extremely happy with my progress.  When looking at the various blood counts, he said something like, "these numbers are as good as they can be," and regarding the situation with my muscle constriction, joint pain, etc., he was "extremely encouraged" by the fact that the change in meds seems to have stabilized the problem.  In fact, we think we are seeing a slight improvement since last month.  Of course, I always want immediate gratification, so even though it seemed the situation was improving ever-so-slightly, I certainly wasn't jumping up-and-down.  Damon reminded me that GVHD can take years to run its course (if it does at all!) so this apparent change in direction, however slight, is absolutely huge.  I honestly can't remember the last time I saw him so happpy (not that he's usually grumpy or anything), so I guess this really is good news.

Oh, and for the first time since my initial weight loss (I went from 165lbs to about 135lbs during the first few months of this ordeal) I'm happy to report that I'm back up to 150!  I was actually 153 and the doctor's, but that doesn't really count. The real number is that first-thing-in-the-morning-naked weight, which was 151 today. :)  I'm sure a lot of you who are trying to drop pounds are sick of hearing about my triumphant weight gain -- too bad. :)

On top of all this, my energy level is definitely up.  I still haven't biked to the ferry, but I think, after a few more rides on the stationary bike at the JCC, I'll be ready.  I need to make sure my legs and lower body are strong and stretched out before I ride in traffic.  It's not about the riding -- I can do that -- it's about being able to make sudden moves, get my foot on the ground if I need to, etc.

Avid readers of this blog remember that I was pretty drained after our family trip to San Diego a couple months ago.  Well, this month, we did a much longer East Coast trip, and while the travel day home is always grueling, after one day of rest, I felt (and still feel) great.  So good, in fact, I think I'm finally going to book a trip to Dublin for work for sometime in July/August.

OK, now the fun part: some brief stories and pics of our trip. The first part of the "trip" was vacation for me:  Heather took the boys to her mom's for nine days, while I got some much needed downtime (see previous post.) After a few days of rain in Massachusetts, the summer sun arrived and the kids had a great time:

Slip and Slidin at Gramma's

Heather even took Floyd to Phish's Summer Tour fall opener in Worcester.

Inside the venue early

A week later, I took a red-eye to Philly, hopped a shuttle to Atlantic City, and checked in to the Trop -- home for the next 3 nights.  I got there early enough that they hooked me up with an early check-in.  By 9:30a Friday morning, I was in my room, and by 10a I was asleep for a much needed nap.

View of Bader Airport from my room

The plan for the next few days went as follows: 3 Phish shows in Atlantic City: Fri night = boys night; Sat/Sun = whole family. Heather and kids drove down from Mass to Atlantic City all day Friday while I hung with my best Phish buds, Scottie and Dougie Doodles.  We got in pretty early and got reasonably close for the first night.

Phish, 6/15/2012 - Atlantic City (from our vantage point)

For non-Phish fans, I'll answer the obligatory "Why do you need to go 3 nights?  Isn't it the same show?"  No, the shows are completely different.  Not a single song is repeated over a multi-night run.  Here are the setlists from the 3 nights.  It was fun to experience a show up close -- rare for me these days since we usually bring the kids.

On Saturday and Sunday, we found a great spot opposite a refreshment tent. With the tent directly behind us, we had a natural foot-traffic deterrent and a safe place to set up our kid-friendly area.

Scottie (orange shirt), Dougie, me, and Heather

Heather and me - no sun for me!

Heather and Orion (first set)

Floyd on Dougie's shoulders

Orion and me

Having Dougie, Scottie, and Mikey around was not only great for me, but a huge plus for Floyd's concert-watching experience.  Between the three of these guys, Floyd probably got an hour of shoulder-ride time:

Floyd on Mikey's shoulders for Possum

Here's a video from the same song.  Love how Floyd is singing along here, "Oh, Possum.... your end is the road!"



We took a lot more pictures and videos, but I'll spare you.  There were so many highlights of the shows, but I'll spare you that too.  If you really want to, you can read the reviews on phish.net.

Well, I'll share one thing: it seems there's a Father's Day tradition where Phish plays Brother and all of the band members kids' "jump in the Tub with their brother."  Here's a video someone posted to Youtube.  The kids start coming out at around 2:15.



Pretty cool to take your kids to a Phish show on Father's Day.

While the shows were the highlight of the trip, we also had some fun in the ocean.  The water was surprisingly warm for June.  I don't remember it that warm when I was a kid.  As usual, Orion escaped his diaper before long:

Heather and Orion on the beach in Adlannick Siddy

We spent the rest of the week in and around Philly seeing family and friends.  My brother-in-law, Matt has a sweet pad in West Chester with extra bedrooms and bathrooms, so it was a perfect place to stay.  He even let us use his jacked-up jeep all week!

Woah, wouldya look at the size of that that thing!

Here are a few pics of the rest of the trip.  Apologies to Matt, Val, Michael, and Adam.  Somehow, I don't have a single picture of you guys.

Heather pullin the kids to the Market near Matt's
Jen, me, and Eric: the three musketeers (best friends for 30 years)

Kids of the 3 musketeers 

Floyd saw he first home Phillies game

With my parents and the Knox's

Grandpop looking good at 85!

Carly and Orion (just sayin!)

Floyd, Brett, and Carly

Did we mention that Floyd flew the plane home?

Last but not least, I have set a personal goal to, along with Salesforce.com, raise $100k for the LLS in this year's Light the Night walk (October 18th, 2012).  The next blog post will have more info.

Kickin' it like Mario Balotelli,

-jg