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Wednesday, March 30, 2011

XX, XY, that's why... there's you... and me

Blogging Tunes: Grateful Dead - 9/20/91 Boston ("Help>Slip>Fire" show)

Well, it's done.  I now have approximately 5.25 billion new cells from my anonymous "O+" donor.  Sorry to disappoint those looking for a story that might make you faint, the process was incredibly simple -- a glorified blood transfusion.

Yup, the donor just gets some blood-cell stimulating injections, then blood is collected via normal methods -- e.g. "prick in the arm."  Somehow, they get all the contents of the blood to separate, they extract the stem cells, and give the rest back to the donor.

I get the stem cells, and they somehow know how to seek out my bones and get themselves in there.  Wild, huh?  Here are some pics so you can get an idea.

(The stem cells come in a cooler, just like craw fish)

(Blood close up)

(Sharyn lookin' at the stem cells)

(Flowin...)

(The Birthday Boy)

So that's really it for now.  My counts are still going to drop because of the cheno, and once they are down to zero, we'll start with the Neupogen shots again to get the counts back up.  This time, it'll be cells produced from my new marrow!  The doctors will obviously monitor for all sorts of stuff, and even if things are going smoothly, there are risks of all kinds of side-effects and other complications.

Thanks again for all the love, light, and support.  It's working!  I'll keep you all posted.  

I will kick its ass,

-jg

Tuesday, March 29, 2011

You were gonnnnne....

Blogging Tunes: Howard Stern - 3/29/10

Today is Day "Minus 1."  I get the stem cells tomorrow!  I'm trying to focus on that so I'm not bummin about the rest of what's going on, which is:

1) I've been here for more than a week and I miss my family.
2) My energy level and appetite are extremely low, and if that weren't enough, last night I had excruciating stomach pains/cramps that even morphine couldn't relieve.  Ugh.
3) This morning, while I was in the shower, the nurse apparently threw my BlackBerry into the dirty linen basket with the old sheets.  By the time I realized it was gone, the linens were on their way to the laundry.  They are on some wild-goose chase trying to track it down now, but I don't hold much faith in their sleuthing skills.  If they don't recover it by tomorrow, I guess I'll get another one.  Anyone have BlackBerry Bold on Sprint?  Like it?  I wonder if I could port my number to a Salesforce phone.  I'll have to ask about that.

Oy gavalt.

I will kick its ass,

-jg
 

Monday, March 28, 2011

Do Do atama ga shock

Blogging Tunes: Howard Stern - 3/25/10

An old friend dropped me an email this morning (yo yo, Adam!)  He shared with me a Japanese word which rivals omekase in terms of coolness, and obliterates it in terms of relevance to this blog.  The word is:

Gambarimasu



According to Adam: In Japan, they have an expression: Gambarimasu which is a combination of "I will do it." and "I will try my best!"  Even when shown extreme hardship - such as now - Japanese still have the spirit to survive, achieve and do their best.

Today is Day "Minus 2" -- i.e. my stem cell transplant is in two days on 3/30/2011 -- and it finally feels like it.  Meaning, I feel like crap.  This is expected, of course, so it's all good and I can still proudly say, "Gambarimasu!  Hai!"  But it's still uncomfortable and annoying.  The chemo is done, and the immuno-supressives (sp?) have started.  Here are my White Blood counts:


     | 3/23  | 3/24  | 3/25  | 3/26  | 3/27  | 3/28 
-----+-------+-------+-------+-------+-------+------
WBC  |  1.8  |  1.6  |  1.5  |  1.3  |  1.2  |  0.7
ANC  |  0.97 |  1.07 |  1.23 |  1.12 |  1.07 |  0.63


With WBC under 1.0, that's the end of the outside food.  Not coincidentally, my appetite has pretty much vanished.  Yesterday, I ate equivalent of a medium-sized breakfast -- a #5 bagel from Crepes on Cole -- and that was it for the whole day.  Thanks to Raffi for bringin' it over. Funny, Dave came over too and was hungry, so he ate the hospital food.  Better him than me.  Actually, yesterday was a red-letter date in the history of Dave Brown.  Not only was he sporting a new jgwkia hat, but for the first time since the blippin Giants won the World Series, he wasn't wearing that dorky Torture shirt. ;)

(The Reverend, David A. Brown -- my bestest buddy)

So the three of us watched the first basketball game of theday (wooo, VCU!), then they left, and I rested.  Only did one set of laps yesterday, so I gotta muster up the energy to get some more exercise.

Lunch just arrived.  OK, I guess I'll eat this hot dog.  It's "all-beef," ya know.  If I can eat a little bit here and there it'll go a long way in keeping my weight up.  The "kids menu" is my savior, once again.

Seriously though, my energy level is really low.  All I want to do is lie in bed.  Having the keyboard is big (yes, Rob M. brought it back - and yes, middle C still doesn't work) -- if I don't feel like motivating to do laps, I can at least sit down and play a few times a day.  Inevitably, I'll get into it and start jammin' out, which is arguably just as good (if not better) for me than doin an extra set of laps.

Speaking of laps, here's a (blurry) pic of me doin' laps a few days ago.  One other advantage of the Hickman line (over the PICC) is that, since the port is on my chest (not my neck), I can wear normal shirts.

(Look at all that chemo!)

The big difference this time around, in terms of amenities, is the 4G network hotspot Benji brought me.  Thanks, Benji/Steve.  Now I finally have the bandwidth to stream shows from my Slingbox!  It's pretty lo-res -- especially for hockey, since the camera is always moving -- but it's much better than nothing.  It's nice to know I won't miss any of the playoffs.  Go Flyers!

(PC Slingbox app streaming from my Comcast DVR)

I also got the MLB At Bat 11 app for the iPad.  The store credit is still going strong; Thanks, Loftie!  About half of the Phillies pre-season games are televised through this app, and the resolution over 4G is fantastic  With the Final Four, The Masters, MLB season starting, and hockey playoffs, hopefully these next few weeks are going to fly by.


(Phils/Atros pre-season game on my iPad)

(JRoll signing autographs in the pouring rain -- gotta love 'im)

(dedicated phans in the warm rain -- looks like fun)

Lastly, on the entertainment front, I downloaded Cribbage HD for iPad so I can kill Matty's place.  Text me when you're ready for a game, chachi.  I'm gonna bust out the Dorcas on you!  If anyone else wants to play, grab the app for iPhone or iPad, and add me on Game Center.  Use my johngreene.org addy, not my gmail addy for my Game Center username.  I kill all of your places!!!  :)

OK, time for laps.  Sounds like Laura Brown is gonna join me.  Hooray!

I will kick its ass,

-jg


Friday, March 25, 2011

There Were Days Between

Blogging Tunes: Grateful Dead - 9/24/91 / ATL@PHI baseball pre-season (ESPN)

Today is "Day -5" -- that is, 5 days until my new birthday.  I heard a rumor that they will actually bring me a birthday cake on the transplant day (March 30) since, in a sense, I'm being reborn.  At least I won't be "born again."

Note: I'm assuming any readers that would be offended by the "born again" comment would have stopped reading long ago when they noticed how much Stern I listen to.  "Howard?  They did a terrible thing!  Nobody came, nobody cawled."

The chemo is going pretty well.  No nausea (yet) and the appetite is still up (Tripp came with a half-order of fatty, greasy, oh-so-yummy duck from that place on Noriega between 30th and 31st Ave across from Safeway) but the groggy/tiredness is starting to set in.  I'm forcing myself to walk as much as possible, even though it's easier to just sit and watch TV, especially with the NCAA tourney on.  Also, Benji brought me a 4G wireless hotspot thingie so I finally have enough bandwidth to watch shows via DVR/Slingbox.  I have 4 "Chicago Code" episodes to catch up on.

Yesterday, while walking, I saw something that made me cry.  There was a baby, probably under 2, being wheeled on a gurney, binky in mouth, hooked up all the chemo stuff.  I stopped dead in my tracks for a few seconds and then just had to keep walking so I didn't have a little meltdown right on the spot.  So glad this is happening to me and not Floyd or Orion.  Not sure how I'd handle it if it were happening to one of my kids.  If there is anyone reading this who is (or knows anyone who is) dealing with that situation, my heart goes out to you.

Somewhat related, there's a GD and cancer related movie that just came out: The Music Never Stopped.  Dead.net actually has a related page to tell your Dead-related healing story.  Since I listen to so much Dead in the hospital, I think mine qualifies.  So if they ever send my password confirmation email, I'll post. [Update: got my account verified, so I posted over there.]

On a lighter note, I've been remiss in posting some more jgwkia pics, so here are two:

(Mike and Yasha) 

(Scott "Scottie, get us some Boston gigs" Kaufman)

And for those of you paranoid about wearing a cap with the word "ass" on it (around your kids), Steven Tyler said "ass" twice on American Idol this week -- so lots of youngsters are already exposed.  :)  Have you gotten any jgwkia schwag?  Send a pic (hopefully clearer than Mike's) and I'll post it here.

I will kick its ass,

-jg

Thursday, March 24, 2011

Knee High to a Man

Blogging Tunes: Grateful Dead - 9/22/91 Boston Garden / MIN@PHI pre-season baseball

This is one of the first non-chronological jgwkia posts -- I'm guessing there will be more in the coming days.  Sometimes it's just not possible to blog in realtime.

Many folks have asked about the Philly trip, so I figured I'd post a bit about it.  Before I do, though, I want to wish young Orion H. Greene a very happy and healthy first birthday.  Happy first Birthday (3/23/11), O-man:


OK, so last week we went to Philly to visit friends and family and attend my Nephew's Bar Mitzvah.  I don't think it's too common to take a coast to coast trip the week before you get a BMT, but my oncologist was cool with it, so that's what we did.  We flew out on Tuesday and came back Sunday.  The travel days were extremely hard.  Under normal circumstances, I would never even think about taking a one- and three-year old on a plane for upwards of six hours, but these were extraordinary times.  We really wanted to be there for Justin's big day and we wanted the family to meet Orion.  Even if things go perfectly with the BMT, I'm probably not going to be able to fly anytime soon, so this was really the last chance to get out East.

Unlike previous trips, we didn't go into town, do any sightseeing, or anything like that.  This was all about seeing family and friends.  We stayed in Plymouth Meeting which was pretty central to the people we were seeing and the event venues.  The room had a very small kitchen-ish area with a counter, sink, 'fridge, and microwave: perfect little nook for Orion's pack-n-play.  Floyd got to sleep in his very own queen bed (as did we), but the small quarters meant that he essentially slept and woke when we did, depriving him of 2 or 3 hours of sleep every night -- certainly not good for his mood.  He did pretty well, all things considered.

On Wednesday afternoon we visited my brother and his family in Ambler, PA.  My nephew has a nice drum set and my niece has this cool fake guitar that plays a couple 80s songs minus the power chords -- you have to fake strum to get the chords to play.  Of course Floyd obsessed on both of these.  And, uh, dude?  You're not a lefty.  Click each pic for a larger version.


My sister in-law made a delicious dinner (salad, chicken marsala, and pasta), but all Floyd wanted was the dessert:


On Thursday afternoon, we visited my parents in Huntingdon Valley.  My mom saved my favorite childhood game, Creative Playthings' Multiway Rollway for Floyd.  He definitely needed my help, but once he started, it was hard to tear him away.  Eventually it was nap time, though, and the inevitable transition tantrum.  When he got up, and for the rest of the day, all he could talk about was the game.  I'm thinking it'll be a great 4th birthday present.  Here's a pic of my dad watching the Temple/Penn State game in the same kitchen where I grew up:


On Thursday night, we got to meet our sitter for the next few nights.  Maddie came highly recommended by Lauren Spike's sister, Susan. (Thanks, Susan!)  She came over to our hotel to meet the kids and hang with them for an hour so we could get a St. Paddy's Day drink.

(Maddie and Orion)

On Friday we spent most of the day with my pal Eric (ejsphilly) and his family (Tracy, Hope, and Ruby.)  Even Eric's brother, Doug -- the one who got me that signed Carter Jersey -- and their kids (Jordan and Cooper) came by for a few hours.  Doug's kids are practically the same age as Floyd and Orion; Hope (not pictured) is six months older than Floyd.  Here are some pics from the visit:

(Heather, Orion, and Ruby)

(Tracy, Orion, and Ruby taking a stroll)

(Orion and Cooper getting to know each other)

(Eric and Ruby)

Later in the afternoon one of my best friends from childhood, Jen, came over.  Back in the day, Eric, Jen, and I were inseparable.  Jen might actually be a bigger Phillies fan than I am, if that's possible.  I love you, sweetness!

(Jen, Ruby, and Eric)

Friday night was the Bar Mitzvah service.  I had never heard of a Friday night service, but leave it to my brother to do the non-traditional.

(my dad and my niece, Lauren)

As I mentioned in the 3/19 post, Floyd only lasted about 10 minutes during the service, but he had a great time at the Oneg that followed:

(Floyd going nuts with balloons)

Saturday was probably the best day of the trip.  After a less than stellar breakfast experience where these meatheads from the NYIT baseball team took up tables long after they were done, we spent the day with the Spike's and the evening at Justin's party.  I've known Rob Spike since about seventh grade (he was Robbie then.)  For you old-time computer geeks, Rob and I actually met on a BBS.  I think it was Pat-Net, right, Blob?

I've known Lauren (Rob's wife) since we were about 3 as we grew up around the corner from each other.  Yes, I had a hand in their introduction -- I don't think they've ever forgiven me. The pictures will tell it all here:

(Cheesesteaks for lunch)

(Floyd and Carly playing iPhone games)

(Lauren and Carly -- so cute)

A quick story about Rob and Lauren's wedding (5/5/96).  I will always remember the date because my old band, yeP!, played a show the night before in Northampton, MA.  Jen and Eric drove up from Philly (approx 5 hours) to watch the Flyers playoff game and attend our gig.  After the show (at 1:00am), they drove me down to Philly so I could go to the wedding.  I had hoped to sleep in the car, but I was so wired from the gig that I didn't sleep at all.  I got to my parents house around 6:30a, and needed to be at the wedding venue at about 9:30a for pictures.  No sleep... just a shower, shave, coffee, and wardrobe change.  What a crazy weekend.

So onto the party night.  My bro had the entire upstairs of the Manayunk Brewery reserved.  It was the perfect venue for a Bar Mitzvah party.  There were two huge rooms: one with a big bar, adult food setup -- big woo sushi platter and some great apps -- and big TVs; and another with a DJ, dance floor, and kids' food table.  All the grown-ups were watching the Temple/SDSU game when we got there.  Exciting game, wrong result.

After the candle lighting ceremony and a great montage showcasing Justin's life so far -- great job, putting it all together, bro -- the dancing really kicked into high gear.  Even the adults started throwin' down... again, the pictures tell it all:

(Justin and me)

(My mom, Heather, and me)

(Dave and Jess -- my brother and his wife)

(Heather looking smokin' hot)

(the kids: remember dancing like this?)

Gotta go do some laps.  I've been blogging too long.

I will kick its ass,

-jg

Wednesday, March 23, 2011

You can't hide from yourself, not at all

Blogging tunes: Howard Stern 3/22/2010

No, that's not a typo, I'm exactly one year and one day behind on Stern.  Believe me, I know what day it is... it's 3/23/11 - Orion's first birthday.  Happy Birthday, little O-man.  Wish I could be with you:

Orion in the lobby at our hotel in Plymouth Meeting, PA (3/20/2011)

Actually, I just changed the audio from Stern to the Phils/Rays pre-season game.  I downloaded the MLB At-Bat iPad app (thanks, Loftie - I still got some store credit!) and the video of this game is supposed to be available, but of course, the network here is too slow.  I guess I'll be listening to a lot of baseball here.  I just don't know what I'm going to do about Flyers playoffs.  I don't think there's an audio-only option for NHL is there?

Anyway, this post isn't more bellyachin' about network issues, it's about the schedule of events over the next week or so here at UCSF.  Today is day -7, meaning we're 7 days away from the actual stem-cell transplant.  The schedule I was given shows from day -8 (admission) to day +11 -- that's roughly 3 weeks.  I was told I'd be in here for closer to 4 weeks, so I'm not sure what happens on day +12 onward.



Date   Day    Treatment                           Supportive Care
3/22    -8    Admit/line placement
3/23    -7    Busulfan 0.8mg/kg IV x 3
              (Busulfan levels drawn after first dose)
              Fludarabine 30mg/m^2
3/24    -6    Busulfan 0.8mg/kg IV x 4
              (Busulfan adjustment if needed)
              Fludarabine 30mg/m^2
3/25    -5    Busulfan 0.8mg/kg IV x 4
              Fludarabine 30mg/m^2
3/26    -4    Busulfan 0.8mg/kg IV x 4
              Fludarabine 30mg/m^2
3/27    -3    Busulfan 0.8mg/kg IV x 1
              Fludarabine 30mg/m^2
3/28    -2    Donor collect #1                     Tac 0.007 mg/kg IV
3/29    -1    Donor possible collect #2
3/30     0    Peripheral Stem Cell Infusion
3/31    +1                                         MTX 5mg/m^2
...


The rest of the "plus" days are pretty much the same as the Day +1.  I'm sure they will be monitoring all kinds of stuff, giving me additional meds, etc., but this is all the info I have right now.

So yesterday I got the Hickman Line, and this morning we started the chemo.  For the Busulfan, they need a special machine (the one with the green display) -- not sure why, but here's a pic of my Trans Pal from this morning:


It's gonna be crazy walkin' with that thing, but after the Feud, it'll be time for laps.  It's been a rough adjustment, but I'm feeling a bit better now than I was this morning.  More posts coming this week, so come back often.

I will kick its ass,

-jg

Let it be revealed...


Here's the day so far:
  • 5am: "prick #4" - even with my central line in place, apparently they need to draw blood from a different location to check very specific chemo levels later today
  • 5:15a: vitals and weight
  • 6:00a: ponder my new reality, listen to Howard
  • 7:00a: anti-nausea meds, read the paper
  • 8:00a: chemo begins (pic of Jen setting it up attached), horrible coffee, cold eggs

*sigh*

iwkia,

-jg

Sent from my mobile device

Tuesday, March 22, 2011

Can ya tell me where a man might find a bed

Blogging tunes: Howard Stern - March 10, 2010

Looks like I've drifted back to being a year behind on Stern -- havent had time to listen that much lately. Clearly, I should be able to catch up over the next few weeks.

I am typing this update from the UCSF food court across from 505 Parnassus. I just finished a veggie burrito and am waiting for the call from the Nurse's Station on 11 Long telling me that my bed is ready. Until then, I have my iPad and Howard to keep me company.

I got The burrito at 3pm -- my first food of the day save for a shot of espresso and some pickle juice at 7am. Yup, today was a "fast" day since I had my Hickman Line put in at 1pm. Not sure why they didn't want me eating prior to the procedure, but I guess you gotta follow the rules when it comes to surgery.

I was able to leave right after the surgery since I refused the sedative they wanted to give me. What is it with hospitals these days? By default they wanna dope you up! Sorry, I'll deal with a little pain if it means I can get up and leave afterwards. Want me to be buzzed, I'll take a martini, please.

So I'm going to write until I get the call, and then I'll write much more this week. Lots to talk about regarding the BMT and the vacation to Philly. Let's start with what's going on right now.

My Hickman Line is in and can stay in for more than a year(!) Hopefully, I won't need it that long. It's like the PICC lines that I've had in the past, but it accesses the circulatory system through the jugular and tunnels through the skin and comes out on the chest so that the ports a can be protected by your shirt. The procedure was pretty simple and didn't hurt that much except for the lidocaine (local numbing agent.)

If that were the only needle I had to deal with, it would have been an easy day. Nope, that was the third. First was the normal blood draw, which doesn't usually hurt except for the initial "ok, here comes a little prick," part. I don't know what this woman did, but it *really* hurt today. She just kept it right there and drew 6 little tubes of blood. I'm cringing and closing my eyes, and she says, "it doesn't still hurt does it?" Ummmm, YES it does! She says, "I don't know, it's in like it normally is, it shouldn't be hurting." Great.

Then, before the Hickman procedure, they needed to give me an IV. Yay, "little prick #2." Of course, they didn't use the IV, since I refused the sedative. But it needed to be there in case there were complications and they needed to give me something. I'll probably take something tonight as the lidocaine is starting to wear off.

OK, just got the call. Heading up to 11 Long.

I will kick its ass,

-jg

Saturday, March 19, 2011

Scents and subtle Spikes


Visiting Rob and Brett Spike. Oy gevalt.  What a pair.

Sent from my mobile device

A Blessing for your head...


A hearty Mazel Tov! to my Nephew Justin on becoming a Bar Mitzvah. The service was wonderful and the Cantor was amazing. The Rabbi said a nice healing prayer for me as well, when my parents and I were called to the Bimah for the pre/post Torah blessings. Touching moment.

Floyd couldn't sit quiet/still (surprise, surprise) so Heather took him out to play with the iPad 10 minutes into the service. Fortunately they pipe the audio out into the lobby/concourse so Heather heard every word.

Today: visit with the Spike's (day) and Justin's party (night). Tomorrow: family brunch and fly home.

BMT news: Got the official word: I'm being admitted to UCSF on Tuesday at 9:30a. Let the games begin.

iwkia,

-jg

Sent from my mobile device

Tuesday, March 15, 2011

Big ol' jet airliner...

Heading to Philly for my Nephew's Bar Mitzvah and to visit with family before the BMT begins next week. I have lots more to blog about from last week (happy hour at work, Bridget memorial, sushi with Rob, our last family dnner out in San Rafael (for now), a hike with the Brown's, and more), but didn't have time to post last night. Stay tuned!

iwkia,

-jg
Sent from my mobile device

Thursday, March 10, 2011

Gotta Get Down to the Cumberland Mine...

Blogging Tunes: somafm - Drone Zone

I'm heading into the office for the first time in a couple months today.  Big milestone.  The last time I went in was early Jan, a couple weeks after I completed my induction.  That visit, to attend a Staff Meeting in person, and to surprise the $&!% out of my team, only lasted an hour, and really tired me out.

Today, I'm planning on spending the whole day in the office: real work; meetings; the whole nine; I have a dentist appointment downtown (missed my last one due to chemo); and I'm to be the recipient of a Happy Hour party so work folks can wish me good luck with the upcoming treatment. I'll be taking the Larkspur Ferry for the first time with my good buddy Rob W.  It'll almost be like things are back to normal.  Almost.

Speaking of achieving normalcy, the early results from the bone marrow biopsy look great.  My team says that I am "exactly where they hoped I'd be" at this stage of the game.  They are also extremely impressed with my energy level, weight gain, conditioning, etc.  Both Bridget (my marrow coordinator) and Dr. Lucas (from the CCC) said that based on what my body has been through the last few months (i.e. all the chemo, infection, etc.), I'm exceeding all of their expectations (in terms of my health/conditioning) across the board.  This bodes very well for the upcoming transplant.

Not coincidently, in final preparation for the BMT, Heather and I have the big "Family Consult" meeting with Dr. Damon and Bridget tomorrow.  In this meeting we'll go over everything involved in the procedure, the timeline, the after care, etc.  They really want to make sure we're ready on all fronts.  This is also the last time to discuss the "Do we really even need to do this?" question.  As I've written before, and discussed with many of you, my hope was to, largely through intention, incur a modern miracle, whereby my leukemia would disappear and the BMT wouldn't even be necessary.  I will find out more at the meeting tomorrow, but here's the basic deal with this: even if my biopsy shows that I'm in complete remission, the BMT is still the recommended course of action.  Why?  The nature of this disease is that it comes back.  I'm going to ask for hard numbers to support this, but my understanding is:

1) The recommended course is based on my initial diagnosis, not my current state; there's literally no biopsy results that would change their recommendation of a BMT as my best chance for cure.
2) It was no small feat to get me to this state of remission based how effed up my blood, marrow, and chromosomes were back in November 2010.
3) The chances of a successful BMT go down significantly with each successive chemo treatment

Number 3 is the biggie here.  What this means is that, let's say we took a chance that I would stay in remission and we blew off the BMT.  Then 3 years from now the Leukemia comes back, and we have to do this induction and consolidation all over again... and we have to get the donor blood again.  Again, I need the hard numbers, but from what I've been told, the likelihood of success for a BMT at that time would be around half of what it is today.  Based on those odds, I'll go with my doctor's recommendation.  Wouldn't you?  I'll post another update on this after the Consult.

In other news, we're going to get the final go-ahead tomorrow, but it looks like we're going to be able to take a short trip to Philly to see my parents/family and to attend my Nephew's Bar Mitzvah next weekend.  My parents haven't yet met Orion (unless you count Skype) so we're really psyched to go out there and see everyone.

Lastly, it wouldn't be a blog post without some kind of Floyd update.  The latest with the little bugger, besides his constantly wanting to hear "Scawlet" and "Tehwapin" is that he's totally into this match game we got for him (and he's damn good at it too.)


He also loves "banana chips" which we call "monkey chips".


Time to shower and get ready for work!  Exciting times!

I will kick its ass,

-jg

Tuesday, March 8, 2011

Home If You Want To...

Blogging Tunes: somafm - Groove Salad

I thought I was going to make it into the office today, but after a long day at UCSF yesterday (and a sore lower-back), I think a home day makes more sense.  I have a ton of work catch up to do (email, chatter, etc.) as well as some home things that have been piling up.  A nap is probably in the cards too.  My energy is returning from last week's chemo, but I'm still not 100%.  What is 100%, anyway?  The time I'll save from not having to commute will, of course, help with all this.

The BMT date is fast approaching and the "list of things to get done" isn't getting much shorter.  Hopefully we can nail a bunch of stuff today and tomorrow.  Thursday is definitely an "in the office" day, as I have a dentist appointment downtown and Benji has organized a "happy hour with jg" thing. Amazing how a simple thing like a dental cleaning can get put off for months and months when you're dealing with blood cancer.

Friday is another pretty full day at UCSF followed by a memorial for Bridget from the Kezar Pub (email me for info) and a sushi dinner with my good pal Rob M.  Would you believe I haven't eaten sushi since I was diagnosed back in November?  Definitely gotta hit Grandeho's once before the BMT.

On a fun note: Sunday, Floyd and I made our (seemingly weekly) morning trip to House of Bagels in San Rafael to get some bagels, lox, and whitefish salad.  So nice having a real bagel place half a mile from our place. When it's not raining, I can see us biking over there instead of driving.  The bagels are great, the whitefish salad is the real deal, and the lox is fantastic.  However, whoever made this sign clearly went to the Dan Quayle school of spelling:



We also took advantage of the rain and went to the BADM where Floyd had a blast playing at the sand table and listening to the Dead tunes that the hippie-worker-dude played over the stereo:


Lastly, I had a great conversation with "Dan," a guy who called me though the lls First Connection program.  I think he's the 4th or 5th person I've spoken with through this service -- it's really helpful to talk to people who have been through similar treatments so I can get a better idea of what's in store the next few months.  Thanks a bunch, Dan!

OK, that's the quick morning update.  Time to crank on some work.

I will kick its ass,

-jg

Monday, March 7, 2011

Sit Down and Patch My Bones

Blogging Tunes: none.

Sitting here with my iPad at UCSF, resting after a bone marrow biopsy. Doesn't matter how much they "numb up" the area, this procedue is no fun. It's hard to describe what it feels like... when they get in there with the needle, it seems like they are sucking nerves right along with the marrow. The lidocaine(sp?) helps some, but you can't numb the inside of a bone.

There are some more detailed descriptions online:
http://www.google.com/search?q=what+does+a+bone+marrow+biopsy+feel+like

Anyway, we'll get results a bit later today. I'm still hoping for some kind of miracle where I won't need the BMT. Hey, miracles happen!

Heather is coming to meet me for an early lunch and then she and I have some kind of a "Social Evaluation," back here on the 5th floor at noon.

Unless the pain from BMB incision is too much, I'm planning on heading into the office tomorrow. See many of you then or Thursday!

iwkia,

-jg

Thursday, March 3, 2011

Sometimes You Kick

Blogging Tunes: Howard Stern - 3/9/2010


Today was day 4 of 5 of a mini-consolidation round of chemo.  Considering how easy my last consolidation round was, I figured this was was going to be a piece of cake -- as in, I didn't think I would even feel it or notice it.  Well, despite the T-shirt I'm wearing today, Superman I'm not.  The chemo is definitely affecting me, and since I refused the Dexametasone starting Tuesday, I've been feeling pretty fatigued the past few days.


The reality is, there's a huge different between inpatient and outpatient chemo.  During my last consolidation round, the most exercise I got was walking a couple miles on the hospital floor or riding the stationary bike for 20 minutes.  And if I feel like lying down, I lie down.  But when I'm home with the family and kids, it's a whole different story.  Running after Floyd is exercise enough.  Plus, for better or worse, I'm forcing myself to bike to the appointments as much as I can.  Weather got in the way yesterday, but I rode again today -- the mostly-flat 5-mile route both ways.  So that's Mon, Tue, and Thu that I've ridden.  Should be nice again tomorrow, so hopefully I'll get to ride 4 of the 5 days.


It's not that the riding kills me... my legs and cardio remember what it's like just fine and are welcoming the intensity, it's just that my body as a whole is drained.  So instead of getting up at 5:45a like I usually do, I had to sleep/rest until 8am today, and I actually took a nap during the chemo treatment.


Anyway, one more day of this, and then I get another 2-3 week reprieve until the real fight begins.  Apparently, the chemo they are going to give me at the beginning of the bone marrow transplant (BMT) is going to make all the previous chemos (including the induction) look like child's play.  That's scheduled to start on or around March 23, 2011. Oy.


Two very cool tidbits to note: 1) My ol' buddy from Doppelganger, Adam sent me an awesome pic:




Yeah!  He's sporting the jg will kick its ass cap.  Have you gotten yours?  Email a pic, and I'll post it here on the blog!


Also, former and current co-worker, Kellie got me a sweet, old-school, power blue, custom Phillies shirt with "JG WKIA" (and Cliff Lee's number) on the back.  How cool is that?


(front)


(back)

Thanks, Kel.  Absolutely awesome shirt.  OK, time to relax.

I will kick its ass,

-jg



Tuesday, March 1, 2011

You Shout in Your Sleep

Blogging tunes: somafm: Drone Zone

I've been up since 3:00a this morning, and there's no way I'm getting back to sleep.  I "tried" to sleep til about 3:40, then read a book on my iPad Kindle app (thank goodness for the white on black iPad setting, which is the only way to read a Kindle book at night) and then decided to get up.

It's 5:15a now (Mark Knopfler tribute, I guess) and I figured I'd peck away at my DELL lappie for a bit. I'm down in the kitchen while the rest of the family sleeps.  I'm comforted only by the enchanting sounds of Drone Zone, my cup of Earl Grey tea (which I'm drinking out of a Sixers mug instead of a cup like this), Phillies the fish, and the occasional meow of Elvis, who refuses to come in the house, even though there's a perfectly usable cat door connecting the garage to the kitchen.

Ever since we moved to Marin, the dumb-as-he-is-adorable furball won't come inside.  We think the previous owners had a dog, and he just can't get used to the smell.  He splits his time about 80/20 between outside and the garage.  Last night we decided to put his food in the kitchen, just inside the cat door.  He did actually come in to eat but promptly ran outside when he was done.  Maybe we'll coax him in yet.

So why the ^&$^#@ have I been awake for upwards of 2.5 hours now?  I think it's gotta be the Dexametasone, a steroid that often accompanies chemotherapy cocktails.  Yesterday, I began a five-day outpatient stint of chemo at the California Cancer Care institute in Greenbrae, CA (Marin County.)  My doctor (who rules, by the way) hooked me up with them for treatments and tests that don't require my presence at UCSF.  The CCC is 8 minutes by car or 25-30 minutes by bike.  More on that later.

Yesterday, they give me a low dose "Dex" pill and then an hour of Decitabine via IV.  The plan is to repeat this exact recipe every day this week.  I'm going to ask if the Dex is really necessary, because this artificial burst of energy side effect is not fun.  They gave it to me before at UCSF when I did my last consolidation round... for more than a week, I slept five hours a night and woke up with my mind racing, adrenaline pumping, and body tired -- not a great combination, especially if I'm trying to build my endurance.  There, I was in the hospital.  If I needed to nap during the day, I could.  I mean, I can nap here, but I'm trying to stick to a schedule of working from home in the morning, doing the chemo in the afternoon, etc.

But I digress... I've actually been instructed to work on my cardio and muscle-building.  You see all of this: the week of chemo; the putting on weight; the conditioning; it's all to prepare my body for the upcoming bone marrow transplant (BMT) which is slated to start in about 3 weeks.  The last 4 months ain't squat compared to what I'm about to go through, so now is the time to build strength.

So last week, in addition to buying Yota, I bought a new bike.  Ironically, my old bike got stolen about six weeks before I was diagnosed.  I suppose it was meant to be, as we probably would have detected the Leukemia a bit earlier had I continued to ride.  This could have (1) put my disability benefits in jeopardy -- I joined Salesforce.com in mid-October 2009 and there's a one-year work requirement for certain benefits (2) impacted our Mexico trip, which, even though I was feeling pretty crappy since the disease was running rampant, was a welcome reprieve from the daily grind.  Here's a great pic of me and the two kids in the pool from our casa in Mexico:


Kinda wild seein me with all that hair.  I think I like the buzzed look better.  Here's another shot of all of us at a restaurant on the beach in Puerto Vallarta:


Pictured front to back right side: Havana, Orion, Heather, Floyd, me.
left side: Brandon, Shannon, Dawson, Carolyn, Mary, Melinda


Anyway, back to the bike.  When we moved to San Rafael, the plan was for me to commute to work via bike to Larkspur Ferry.  The new Cal-Park tunnel had just opened, and I was excited to check it out.  For those who don't know, the new Bike Pathway and Cal-Park tunnel (video here)...


... is part of a brand new bike route connecting San Rafael to the Larkspur Landing.  It will be part of the future SMART corridor with a planned station just behind the Larkspur Century Theater. Bicyclists and pedestrians will be completely separated from the future train by a tunnel within a tunnel, and the tunnel includes cell phone access, security cameras, and emergency access points.

Why am I telling you all this?  Well, yesterday, I biked to my chemo appointment.  I took the D street / Wolf Grade ridge there (whole trip was 3.8 miles with 250 foot ascent/descent) and the flat route via the tunnel back (6 miles).  I was hoping to do the same thing today as the rain is going to start tomorrow, but unless I get a late-morning nap, I kinda doubt I'm going to have the strength.

When I got to the Larkspur Landing (Ferry Terminal area) I timed my ride from then on.  It only took me 18 minutes to ride home -- and I'm in piss-poor biking shape.  I should be able to cut that down to 15 minutes easily.  That's going to be such an awesome commute!  Just gotta get this BMT done and recovery from it.

One more bike tidbit.  On Sunday, our friends Eric and Gina (and their kids) came up for a yummy brunch (lox, whitefish salad, bagels, the whole nine) and Eric brought me his old Burley trailer which he no longer has use for.  After his nap, I took Floyd for his first ride in it!


Eep, Orion is stirring which means Floyd can't be far behind.  Time to make espresso for mommy.  I'll come back in to finish and publish this post.

I will kick its ass,

-jg

P.S.  Salesforce.com folks: keep your eye out for a get-together-with-jg drinkie-invite-thingie from Benji sometime next week before I go in for my BMT.