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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