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Thursday, September 12, 2013

Talk About Your Plenty, Talk About Your Ills

Blogging tunes: Lemonchill - The Chill Spectrum

It's been a pretty amazing few weeks with several big milestones.  I didn't intend to blog so soon after my last entry, but the news is too good not to share.  Plus, there's a call to action.

So here's the latest and greatest:

First and foremost, I saw Dr. Damon on Monday and finally got two pieces of info I've been waiting to hear for a long long time:

He said, "I really don't see your AML ever coming back" <--- ding ding ding ding!
He said, "I think we can get you off the tacrolimus" now

Now we've all known -- or at least I have -- that the first bullet was coming, but it was really great to hear.  The second bullet, for me, really symbolizes my full recovery.  Once we're completely off the tac, two other meds can be phased out too.  Here are the specific post-appointment instructions:


1. Decrease tacrolimus to 0.2 mg 3 days per week for 2 weeks - if you are fine, then stop tacrolimus.
2. Contiune Gleevec at 200 mg daily
3. Continue Acyclovir at 800 mg daily
4. 2 weeks after stopping tacrolimus, then stop fluconazole
5. 4 weeks after stopping tacrolimus, stop septra
6. Return to clinic in 2 months


You kinda get used to taking a crapload of meds when that's what you have to do, bur I'm ready to be done with them.  Going from 5 meds to 2 will be huge.  Of course I'll probably need to be on the Gleevec for some time, and all I can say is, thank goodness for top-notch medical insurance -- that 200mg of Gleevec daily costs about $4200/month!  My co-pay?  $20.  Jeez'l peez'l.

Next, and arguably more important, my donor Martin and his girlfriend Jenny had their baby! Welcome, Simon!  He almost feels like a nephew!  :)  He was born a few weeks early, but he's doing just fine.  Here are some pics of the little guy:

Cute, little Simon

Happy Jenny and the little guy

As soon as they get him home, I'm sure we'll have some pictures of Martin holding him in his Eagles, Phillies, or Flyers gear.  We know he'll be all safe and snuggly with his Eagles bear:

Snuggle, Simon Snuggle, on the road to victory!

In other news, Floyd and I have been doing regular Garage Band sessions on my new iMac.  How appropriate that this happens in the garoffice?

Here's Floyd tracking some vocals and playing along to a Phish loop I sequenced.  He can actually play a simple (4 or 5 note) melody over a little loop.  Pretty cool.

The purple track is his vocal

now if I could teach him to use more than one finger

Last, but certainly not least, we are only days away from the San Francisco Light the Night walk benefitting the Leukemia & Lymphoma Society. While I've hit my personal $10k goal -- THANKS EVERYONE!! -- we're a bit behind in our HQ fund-raising efforts this year, so if you haven't donated, and you're so inclined, please consider supporting this amazing cause by donating directly to the Salesforce HQ Technology team.

Let's (walk to the) End (of) Cancer

This year, Salesforce.com is walking in 20 cities across North America!  Fortunately, most of the walks are in October and November, so the non-HQ teams still have some time to fund raise.

We're going great, but we've got a ways to go!


Thursday, August 22, 2013

This Has All Been Wonderful But Now I'm On My Way

Blogging Tunes: none; just the whir of the fans in the garoffice

For the non Phish fans, this blog title is a lyric from the song Down With Disease.  And that's about how I feel right now!  The past two Wednesdays I biked to work, with my San Rafael neighbor and Salesforce co-worker, Rob Lamb.  Not to the ferry, but all the way to work in San Francisco.  That's 22 miles, yo.  I think I can safely say that I went and kicked its ass at this point.  I have two doc appointments in a couple weeks -- Damon and Arron -- and I know in my heart, soul, and blood, that the news will continue to be good.

Yes, we are wearing dorky sfdc bike jerseys (thanks, Jay!)

Also, last Saturday we went to Saanvi's birthday party which was at a pool in Foster City.  Gaurav took some awesome pics, and when I saw this one...

3 Greene boys in the pool - 3 years later!

... I figured it was time to replace the old banner with something more current.

Old banner (Nov 2010)

New banner (Aug 2013)
Yeah, I know, the composition of the new banner isn't as good.  You graphic artist types will have to forgive me; I am le tired.

Three other quick points:

1) Martin and I continue to exchange emails just about every day.  I sent him some baby loot and he sent back this beautiful picture of Jenny and him holding the Sleeping Monkey onesie I got in Tahoe.  Can't wait to see their baby wearing all the Phish and Philly gear (what else would I send them?)

Why'd you send my monkey on the train?

2) Today was Floyd's first day of Kindergarten.  "Long nights, short years" has never rung more true.  Looks like Coleman is going to be great for him.

Phish shirt and a rainbow name tag - what more do you need?

3) I am on a mission (via Salesforce) to raise $250k for the Leukemia & Lymphoma society's Light the Night walk this year.  If you are so inclined, please consider supporting this great cause.  I'm trying to raise $10k of the $250k myself and my donation page is here; the Salesforce National Page is here.

$31k is awesome, but...

We're a long way from our goal, so we need your help.  Many thanks to those that have already donated. If you are interesting in walking in your city/town, click here to find the Walk nearest to you. e.g. here's a link to the Philly walk.

Salesforce CCE walking in 2011

I went and kicked its ass,

-jg


Sunday, July 21, 2013

You and I in a Little Toy Shop

Blogging Tunes: Air - Talkie Walkie

If you're one of those people who usually skims my blog, scrolls down to look at the pictures, or otherwise moves quickly over my meager scribing -- hey, I don't blame you, at this point, with all the healthy reports I might too -- this is a time to STOP and READ.  Because, other than the news I shared back in January 2011 about finding a 10/10 match, this is probably the most exciting blog post I've ever made.

Ready?

I've made contact with my stem-cell (bone) marrow donor, and he is super cool!

yeP! It's true.  It's been 2 years and 4 months since my transplant and now, UCSF, in conjunction with the bone marrow registry here in the USA has connected me with my donor through the German registry (called DKMS) and we now know whose blood is flowing through my veins.

His name is Martin.  He's 27 and he lives in Germany.  Here he is with his girlfriend:

Jenny and Martin
Over the last few days, Martin and I have been exchanging emails and it's been an absolutely incredible experience.  We are just starting to get to know each other, but we're already connected in a way that's borderline impossible to comprehend.

Who is he?  Why was he a perfect genetic match for me?  What compelled him to join the bone marrow registry?  If he hadn't been in the registry (and my transplant came from someone else) would I be in as good health?  Would I be alive?

These are just some of the questions that have been floating around my head for the last couple years, and now I get I to find out!  To the question of, "what inspired you to join the marrow registry?" Martin responds:

"What inspired me? I just wanted to help somebody. Here in Germany there is a lot of advertisement of DKMS. I think it's still the biggest database of donators  (3.7million so far). Someday I saw an ad on a website with Lukas Podolski, a German football-player).


A professional athlete with a Q-tip! Why don't we do this in the USA?

I think it was spring 2010. It was now possible to purchase a set of q-tips to do the typing by yourself at home - by doing a cheek swab and sending it back to the lab - very easy without any needles and pain. I ordered five sets, because i have a big family (5 brothers, 1 sister) and asked them to register too. One of my brothers also got that message to be your possible match, but later after blood analysis, they found out that mine characteristics had been more exact to yours."

So two blood brother are both matches for me?  Does that mean we are related?  If so, how many generations ago?  Martin registered in Spring 2010 and I got sick 6 months later?  I mean, how cosmic is that?  Totally mind-blowing!

That advertisement is so cool.  I'm going to contact bethematch.org and tell them about this. Imagine a baseball slugger holding a Q-tip in an ad for bethematch.org!  Hey Tracy S., want to help me make this happen?

Martin also sent me another picture -- the photo of his DKMS certificate, which he put on his living room wall and looked at every day... thinking of whoever it was that needed his stem-cells and wishing him well.

Martin's DKMS certificate

Check out the date on the certificate.  It's exactly one day before my transplant.  Think about the coordination involved here: I went into the hospital 8 days before my transplant to begin a week's worth of chemo and other preparatory measures, and then one day before my treatment, they draw Martin's blood and fly it 5600 miles west to UCSF. Wow.

So now what?  I don't really know.  Martin and I are just getting to know each other. Hopefully, I'll get to meet him one day.  I've been travelling to Dublin once a year for work, so maybe next time I get out there I can detour to Duestchland.  Or maybe he and Jenny can come visit us in Marin.  :)

Lastly, I want to leave you all with a the words of an Air song.  It's from the Talkie Walkie album and it's called Biological.  Ever since I used one of the lines from this song as the title for my transplant blog entry -- did you know that (just about) all of my blog post titles are taken from song lyrics? -- I couldn't listen to it without thinking of my anonymous donor. But now, I will forever think of Martin.  Clearly it's just a love song, but still...

AIR
Biological

Thousands of hairs
Two eyes only
Its you

Some skin
Billions of genes
Again its you

XX XY
That's why it's you and me

Your blood is red
It's beautiful genetic love

Biological
I don't know why I feel that way with you
Biological
I need your DNA

Your fingerprints
The flesh, her arm, your bones
I'd like to know
Why all these things move me

Let's fuse ourselves to be as one tonight
A part of me would like to travel in your veins

Biological
I don't know why I feel that way with you
Biological
I need your DNA


I've been waiting a long, long time to write this blog entry.  It feels really fucking good. Thanks, Martin.  You have lots of fans here in the States!  Go Borussia Mönchengladbach!

Full ass kickage,

-jg

Thursday, July 11, 2013

That Was Yesterday

Blogging Tunes - Various Artists - The Chillout Spectrum

Quick update and all the news is good:

  • Saw Dr. Damon on Monday.  Everything continues to track in the right direction.  We reduced my Tacrolimus down to 0.2mg and hope to be completely off it within 3 months!
  • Gleevec continues to help wtih GVHD and my range-of-motion is getting better and better.  I can now do 2 or 3 half push-ups with minimal wrist and forearm pain.  Only a matter of time now.
  • Been biking to the ferry three days a week and my energy is good.
  • On the carcinoma front, the lip is full healed.  There's still some weird sensation, but that's to be expected as the nerves re-form.
  • Follow-up appointments with both Damon and Arron (Mohs surgeon) in September.
On the personal and work fronts, a ton has gone on since my last blog: trips to Paris and Dublin; Marin Fair; Lots of baseball with the kids; and so much more.  No time to post about any of that.  See my Facebook wall for most of the good stuff.

Two things I will share:
1) The Salesforce National Light the Night team has been established for 2013.  We are planning to walk in more than a dozen cities. and have a goal of raising $250k to fight blood cancer this year.  Please donate to your favorite sfdc employee once s/he has registered to walk.  My page -- completely lame an unmodified -- is here.
2) I just got an email from UCSF with the name and contact info of my BMT donor!  I've been waiting 2.5 years to learn who saved my life, and I now I know.  Very cool moment.  I will be reaching out to him via email, and, sharing this blog with him.  There may be a little, a lot, or nothing at all to post here related to my donor.  Some people don't put it all out there like I do, and I wouldn't blame him in the least if he doesn't even answer my mail.  It's not about that.

OK, fine, here's one pic of the kids from this morning.  They love to go outside first thing in the morning (in their jammies) and drop hit wiffle balls over the fence in the back yard:

wiffle jammies kids

Kick it!

-jg

Wednesday, May 15, 2013

I Got Mine

Blogging Tunes: Ry Cooder - Chicken Shack Music

It's been exactly four weeks since my Mohs surgery and my lip is completely healed.  It still feels a little weird to the touch, and when I run my tongue over it, but its totally closed up.  It's hard to describe the sensation... it feels like it's not entirely solid under the skin -- probably because it's not.  And the nerves are in a weird state -- probably becauase they are growing back.

Go back one post and look at the pictures (if you have the scroats) and imagine that THAT healed on its own in less than 4 weeks.  Amazing.

Anyway, all this means I can actually go out without worrying about shit getting on my lip and use real SPF lip balm, which, in turn, means I can think about biking to the ferry again!  Shooting for Friday this week.

I feel like the last time I said I didn't need to blog anymore I sort-of jinxed it, so I'm not going to say that now.  I have a follow-up appointment with Dr. Arron and Super Z next Wednesday and I need to make an appointment with Dr. Damon.  Though he reduced my Tac to 0.25mg (via email/Mychart - yeah!) I still haven't seen him in awhile, so I probably should.  My guess is it'll be after I get back from Europe.  I'm heading to France (br's wedding) and Dublin (work) from June 5th to June 15th!

I'm blogging from the ferry so I can't really add a bunch of pics, but here's a video of Orion crushing one at AT&T Park last Sunday for Little League Day.  If you look closely you can see Floyd in his Grasshopper's jersey trying to make the play in left field.


Kickin' it like Orion be crushin' it, yo!

-jg


Thursday, May 2, 2013

Reba Dangle Ladle From Her Lip

Blogging tunes: somafm Drone Zone

Quick break from work -- shortest update ever: saw Dr. Arron's colleague -- one of the other Doctors -- at UCSF dermatology yesterday.  Unfortunately, both Dr. Arron and Super Z were at some conference.

Lip is healing "perfectly."  "Couldn't be any better," said the guy.  Just gotta keep it gooped up with Aquaphor and covered when I'm outside (to protect from the sun.)  A few more weeks and I'll be eating spicy wings again (touch wood) -- at which point I'll be bugging Dr. Damon about lowering my tacrolimus.

One nerdy thing to note.  I used Flywheel to get to UCSF Zion and back.  Very cool experience and cheaper than Uber.

And now back to your regularly scheduled kicking,

-jg

Friday, April 26, 2013

Ah Bretta Fresh Air

Blogging Tunes: La Grosse Radio Reggae - www.lagrosseradio.com - 192kbps CBR, MP3 Internet Radio

Been listening to this reggae/dub station out of France a bit for the past few days.  It's about 50/50 hit or miss, but it's a nice change of pace from Drone Zone when I'm doing something that doesn't require concentration.  As I start this entry, this Warrior King song was on.  The title of this blog post is what the chorus sounded like to me.

It's been 9 days since the Mohs surgery and things are going reasonably well.  It's still quite difficult to eat anything other than really small bites (since I don't want any food to touch the affected area), all beverages are consumed with a straw, and brushing/flossing is still a challenge.  All small potatoes I guess.

Yesterday I sent the latest pic of my lip to Super Z who said it looked like it was healing very well.  I guess we'll find out for sure next Wednesday when I have my follow-up appointment. Earlier in the week, she even said I could stop covering it (with a bandage/band-aid) as long as I keep it gooped up with Aquaphor.  That was real help since the neighboring skin on my face was getting irritated from all the band-aid adhesive.  So every couple hours, I go upstairs, wash my face, and re-apply the Aquaphor.  I still have to keep it covered at night -- and I do.

Even though it still looks a little scary, I'll probably start coming to the office next week -- I've been working from home this whole week, and I'm getting a bit stir crazy.  Hopefully a few more days of healing will do the trick.  I did get out yesterday to play my weekly hour at Little Arrows.  That always puts a smile on my face and gives me a little boost.  Setlist was as follows:

Hello Song (silly fake intro) ->
Hello Song ->
Red Rain ->
Me & My Uncle ->
Mexicali Blues
The Logical Song
Bohemian Rhapsody
Take The Long Way Home ->
Bathtub Gin ->
Piano Man
Eight Days a Week
Throwing Stones ->
In Your Eyes ->
Goodbye Song

So, other than having to work from home, and the aforementioned pains in the toucas, it's pretty much business as usual.  I'm still on all the post transplant meds which limits my energy, but I've been living with that for 2 years now.  The only thing I had to cancel was my trip to Florida for the Leukemia and Lymphoma Society's National Leadership Conference. Christine Landers is just going to have to represent!  Go Christine!

The good news on the the LLS front is that my co-worker and good friend Oliver Demuth and I have been able to make some progress on the framework for how Salesforce is going to hit its goal of raising $250k for the LLS this year.  More news on that as we kick off the fundraising.  If any of you non-Bay-area readers are interested in playing a leadership role in your town's Light the Night walk, please find a walk close to you and sign up, or get in touch with me at jg [at) johngreene {dot] org.

And last but not least, a PotD (Picture of the Day) -- an action shot of Floyd doing his morning laps around the kitchen and living room.


Yesterday he did 200.  At least he's getting his exercise.  Full video is below:


Kick-a-rama,

-jg


Friday, April 19, 2013

The Grass Was Greener

Blogging Tunes: Pink Floyd - Pulse Concert, Live at Earls Court 1994 - http://www.youtube.com/watch?v=kcRF9Jxvz_M

It's been a weird 44 hours or so since they sent me home Wednesday.  Pretty quick in and out given the extent of the surgery (in at 9:15a, out at 2:30p) but considering Dr. Sarah Arron and "Super Z" (my nickname for her super-cool fellow) does 10-15 of these every Wednesday, I guess they have it down pat.

So how am I feeling?  I'm a bit low-energy but improving.  As I've said to the friends I've been texting with: "This took a lot out of me -- literally and figuratively."

Yesterday, I mostly rested, but today I feel like I can do a bit more, so I've been slowly catching up on work email and keeping tabs on the Boston situation. The biggest PITA is eating.  First day was all soup through a straw.  Now, at least, it's small bites of regular food.  Takes about 5-10x longer than usual though.

The question for the day is: to Trey or not to Trey.  My medical team cleared me to go to the show tonight, but I just don't know if I'll be up to it.  On the one hand, I feel like rest, rest, rest is the best thing.  On the other hand, getting out and enjoying a few hours of normalcy might be just what I need.  This will ultimately be a game time decision.  If I can get caught up on work, take a walk around the block, and still have energy, maybe I'll go.

This thing is going to bandaged for a few weeks at least, so I might as well get used it, right?

As promised, I've also uploaded a few pictures to johngreene.org.  I would not advise clicking if you are squeamish in the least about surgical procedures. I can't imagine what it would have been like if this weren't "so superficial" (quote from Sarah and Z) -- I mean, it feels like half of my lip (in the affected section) is gone.  Of course it also looks worse because the area is 1) pumped up with numbing stuff 2) swollen.  Hopefully in a few days, everything will at least return to normal size.

OK, ok, so here are the pics:  *WARNING THESE PICTURES ARE GRAPHIC AND ARE NOT FOR THE FAINT OF HEART - CLICK AT YOUR OWN RISK*
  • Picture 1: area marked with purple ink and numbing agent applied (not too bad)
  • Picture 2: Mohs1 Stage 1 complete (WARNING!)
  • Picture 3: Mohs2 Stage 2 complete with additional numbing agent/swelling (WARNING!)
  • Picture 4: All Done (just a bandage)
And just so this entry isn't 100% gore and 0% fun, here's a pic of the boys from last Sunday on the Coleman/Dominican 101 overpass in San Rafael.  Floyd said, "let's walk into town to get breakfast," which is a far cry from the normal, "I just want to watch TV," so of course, I obliged and gave Heather a few hours off to boot:

Floyd does not get points for color coordination
Kicking away,

-jg


Wednesday, April 17, 2013

Mohs Update 5: Finishing Up

Well, it's done. I'm going to look like someone who lost a fight for several weeks, but it went as good as it could. Dr. Aaron doesn't even want to do an MRI as she thinks it's extremely unlikely that the cancer invaded. Follow up in two weeks.

We're also not doing any repair or plastic surgery. Apparently, this is just going to..... heal. Doesn't seem possible to me considering what it looks like right now. And yes, I took pictures, and no I'm not going to post them here. At some point I will upload them to johngreene.org and provide a link for those brave souls who want to see.

Now I gotta get home and rest. Ice for 15 mins of every hour on this big pressure dressing. Tomorrow, just a bandage. Oh, and I'm probably going to have to shave my whole face since they needed to shave quite a bit for the dressing adhesive.

The weirdest thing about this whole experience was the smell of burning flesh when they were stopping the bleeding after removing the cancerous cells. Couldn't feel it, but could smell it. Wacky.

More soon.

-jg (iPhone)

Mohs Update 4: Stage 2 Complete

Blogging Tunes: Peter Gabriel concert on YouTube: http://www.youtube.com/watch?v=UfBgAq0sQ1s (thanks Rob M, for the tip!)

Two stages are now complete.  They got most of it on the first attempt, but they needed to go a little more in one direction, so they just did that.  Sarah and Z (Sarah's fellow I told some of you about) are pretty confident that this is going to be it, but they can't know anything for sure until they look, of course.

The good news is that it wasn't very deep at all, so its likely that it hasn't invaded anything else and it's even possible that they won't even need to do any kind of reconstruction -- i.e. my lip may just heal up on its own. The other option is, since I have some mild discoloration on the other part of my lower lip from sun exposure, is to do some laser thing where they basically get rid of that sun exposed part (since it's a mild risk for further problems) and just resurface my entire lower lip.

We'll talk about options when they return -- probably in another 45 minutes or so.  In the meantime, I'm taking tiny little bites of graham crackers and saltines, watching/listening to this killer Peter Gabriel show, and yes, doing some work email.  If I'm still here at 2:30p, I'll listen to BOT9 of the suspended game from last night.  Please, Charlie, no Jeremy Horst!

One bit of good news is that Sarah cleared me to go to the Trey show on Friday night.  It seems that, regardless of which healing method we go with, I'll only need a big bandage for one day, and then it can be reduced quite a bit.

More soon,

-jg

Mohs Update 3: Watching PG Concert on YouTube While Waiting

Mohs Update 2: Stage 1 surgery complete

Mohs Update 1

Lower lip is all pumped up with numbing agent.  Looks bizarre -- no I'm not going to post pics... yet.(?)

I feel like that dude from Fat Albert.  First stage starting soon.

Tuesday, April 16, 2013

Moesha Me Up, Moseha Me Down

Blogging Tunes: soma.fm Drone Zone

Saw Dr. Sarah Arron last Friday.  Mohs surgery is the way to go and she's gonna do it.  It is scheduled for tomorrow, Wednesday 4/17.  She just tacked me on to her schedule for the day, so that's a good sign -- i.e. she doesn't think it will take very long.

She will just get rid of the bad stuff, look at it under the 'scope, and repeat until there's no more bad stuff.  She will also then determine whether the bad cells have spread at all.  If they haven't, this should be reasonably straight-forward (if you consider having body parts cut away and reconstructed with plastic surgery straight-forward.)

There's a lot of waiting involved between actual skin removal, so maybe I'll live-blog the whole thing -- yes, I'll be awake during the surgery.

Supposed to go to see TAB in Oakland Friday.  Not sure if that's gonna happen.  Anyone want my tix if I can't go?

That's it for now.

-jg


Monday, April 8, 2013

Undecided, Unrefined

Blogging Tunes - Linas Jazz - www.linasjazz.fr

Today I met with Dr. Steven Wang -- pronounced /wong/ -- a head and neck surgeon specializing in the treatment of benign and malignant disorders of the head and neck.  Here's his full bio.  He looked at my lip for about 1 minute and then we had a pretty simple discussion.  In short, his initial thought, which was to refer me to Dr. Sarah Arron, was correct.  Dr. Wang typically deals with bigger tumors and more serious surgeries.  Not that my lip situation isn't serious -- it's still cancer, and it may well be more serious than it appears -- but we have no way of knowing because the cancerous area on my lip is "not well defined."  This could be because I'm a BMT survivor or it could just be a co-inkee-dink.

But the reality is, the only way to know what we're really dealing with here is to do the Mohs surgery and see where we stand by checking the affected area(s) in realtime.  And apparently, when it comes to Mohs, Dr. Arron is the best in the biz.  So my next appointment is this Friday with her.  Alas, it's just a consultation, so who knows when we're actually going to do the surgery.

I'm trying to be a patient patient -- really, I am -- but can't we just get on with it?

More when I know more.

-jg

Wednesday, April 3, 2013

My First

Blogging Tunes: Tosca - No Hassle

Hell day today.  Temp ranged from normal to 104.5!  My "12:00" appointment at UCSF didn't really start until 2:30p.  I understand that sometimes things fall behind, there are scheduling problems, etc., but what really got me was the woman at the desk saying, "Oh, she should call you next," and essentially blowing me off for 90 minutes.  When I finally demanded to be seen, another (much more helpful) person told me that there had been a mix up and that they would have someone else see me.  If I wanted this kind of service, I could have just gone to MGH.

Anyway, I'm too tired to rant much about this, so we'll get to the good stuff: tests seem to indicate that whatever I have is just a nasty virus.  Counts are pretty much fine (with two exceptions that probably don't matter) and chest x-ray didn't show anything horrendous.  Unclear if it's the flu again.  They didn't do the nasal swabs until the end of my visit, and if the results are posted in MyChart, I don't understand how do decipher them.  I guess I'll find out tomorrow.

So, I'm just going to keep resting, taking Tamiful, Advil, and the rest of my normal meds, drinking lots of fluids, and hopefully, I'll be well enough to go to my first lip appointment on Friday.  Through all of this, the lip has been quite painful and I'd really like to get it taken care of.

Night night,

-jg

Now Watch What You Say, or They'll Be Calling You a Radical

Blogging tunes: KQED Forum (NPR)

I was supposed to have my initial consultation with Dr. Wang yesterday, but that had to be rescheduled (for this coming Monday) since I'm sick.  :(

It seems like it's probably the flu but I need to get a full work-up at UCSF to be sure, so I'm heading there for a noon appointment today.  I actually already had the flu this season (in January I believe) which was surprising since I got a flu shot in October or November.  Turns out a lot of people got the flu this year (even with the shot) but twice?  Really?  I guess I find out more in a few hours.

Over the next two weeks, I have 3 appointments related to my lip carcinoma.  I don't understand why I'm seeing three different people, but I guess there are a lot of moving parts related to this surgery and the recovery.  First appointment is this Friday, then another one Monday.  The actual surgery is (I think) scheduled for a week from Friday.

I'm supposed to go to Florida in a few weeks for an LLS conference (related to Light the Night) but I'd put that at 50/50 (at best) right now.

More when I know more.  Nap time now.

-jg


Tuesday, March 26, 2013

Do you Have the Beatles White Album?


Blogging Tunes: Tangerine Dream - Rockoon.

It's funny -- funny ironic, not funny like a clown.  We're less than a week away from the two-year anniversary of my stem-cell marrow transplant - a.k.a. BMT.  At the one year mark, we tried to make contact with my donor, found out that he is not in the USA -- he's from Germany -- and were told that because it was an international donor, we have to wait two years to attempt contact via my bone marrow coordinator.

Doing the math I thought... ok, after Orion (my younger son) turns three (which he did on March 23rd), I can start thinking about making contact, what I'd want to say, how it all might go down, etc.

Alas, the irony of why the contact will have to wait. My lip biopsy from last week revealed a carcinoma in situ with suspicion of superficially invasive squamous cell carcinoma. The "in situ" part, if accurate, is actually good news -- it means that the cancer has not spread.  i.e. Stage 0 as described here.

But it's still cancer, and we still have to do something about it.  If it is fully contained -- "in situ" -- then the procedure will be relatively straight-forward.  Surgery to remove the affected area and then plastic surgery to clean it up.  If it's anything other than Stage 0, we have bigger problems than the Eagles' offensive line, the Flyers defense, and Doc Halladay's velocity.  Not going to waste any cycles thinking about that right now.

The doctor who took the biopsy was pretty surprised.  Not only didn't he think it was going to be anything cancerous, but type of carcinoma (on the lip) is extremely rare.  It's not even clear that it's related to my AML, other than the fact that simply because of the AML, I am at higher risk for skin cancer.  Though the sun exposure from last April (see this blog entry) combined with my compromised immune system certainly didn't help.

So while I was fully prepared to author my first blog post in three months, with the primary purpose of reporting on things like my joining the NCCN Foundation Board of Directors and attending the annual NCCN meeting, visiting friends & family in Philly for Carly Spike's Bat Mitzvah, planning a trip to Orlando for the LLS Volunteer Leadership Conference next month, and of course, posting some cute pics of the kids -- they just celebrated birthdays 5 and 3 -- I am now faced with the task of not only composing a blog post of an entirely different sort, but more importantly, preparing for imminent surgery (probably next week) and figuring out how to once again integrate (potentially) serious cancer treatment into my daily reality.

Another irony here is that I just finalized all of my vacation plans for the year: a trip to France in June for br's wedding, a week in Tahoe in the summer with the family (two Phish shows!), and a week in Philly for Thanksgiving (hopefully including Floyd's first Flyers game.)  Those three trips will completely exhaust my PTO, so if I have to take any real time off for this surgery/recovery, we're going to have to re-think everything.

Just wanted to get the word out, so no time for a bunch of pics and captions, though my Facebook friends can see a bunch more here.  That said, here's one of the boys with their cousin from last weekend:

Floyd, Lauren, and Orion

... a pic of Floyd the Grasshopper:

I'm a Grasshopper!!

...and a little movie of Floyd's first official Little League (T-Ball) at-bat:

Go Floyd!  Go Grasshoppers!

Dusting off my kicking cleats,

-jg