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Wednesday, April 27, 2011

From the Mountains to the Prairies

Blogging Tunes: MLB: PHI@ARI; NHL: MTL@BOS

OK, I know it's been a long time since I've blogged.  Looking back, it's the longest drought between posts since the inception of jgwkia.com.  I'll try to be better about writing.

So first thing's first -- my condition: the most important thing to report is that the recovery is progressing well.  I am unbelievably tired/fatigued all the time (hence the lack of blogging) but the doctors are happy with my progress.  The kidney stone is still with me, but we've been able to manage the pain and it seems to have moved to a less annoying place.

Now, before we go any further with updates about me, let's stop for a moment and rejoice in the Game 7 beat-down the Flyers put on the Sabres.  Few things move me as much as seeing Lauren Hart and (the late great) Kate Smith sing God Bless America before a home Flyers playoff game, especially when the boys come through with a performance like they did last night.  If you've never seen it, check out this youtube video.  It's very cool the way they mix in the old footage of Kate.  Here's a still.  See Kate up on the big screen?


Lauren's good, but no one sang it like Kate.  LET'S GO FLYERS!

OK, back to me.  Today is day +28 (I think) and as I mentioned, things are going well.  I'm not going to mention any of the bad things that aren't happening, because mentioning such things only has the potential to give them life -- see The Law of Attraction.  But I will share the good: based on my counts, the engraftment appears to have been very successful.  My counts seem solid -- I haven't needed a single transfusion since I left the hospital.  My team was a little concerned about my platelet count Monday, but they think it's low because of all the ibuprofen I was taking (to help with the kidney stone pain.)  So we've backed off the ibuprofen and are back to the oxy/dilaudid for pain (as needed) and hopefully my platelet count will look better tomorrow -- I go to UCSF for labs/counts every Monday and Thursday.

Think about what this means... they annihilated my entire immune system and all of my marrow, then they gave me 5 billion cells that somehow found their way into my bones and started creating new red and white blood cells.  How insane is that?

I can't possibly recount all that's happened since I've been home, but I'll try to give you a flavor of what the new normal is and share a few highlights.  First of all, including naps, I'm sleeping upwards of 11 hours a day.  When I'm not asleep, I'm resting most of the time.  Today is the first day that I've actually felt like using the laptop.  Usually, I'm resting in bed with the iPad and/or watching sports -- if you're gonna be laid up, this is a pretty darn good time of year sports-wise.  I can't remember an NHL quarterfinals with more game sevens.

(Me with my iPad and lappie)

As of a couple days ago, I'm trying to get a walk in every morning -- this is much harder than it sounds.  It's much easier to stay in bed, but I have to force myself up and force myself to walk.  After a short walk around the block, I'm ready for a nap.  Nuts, huh?  In the afternoon I get a bag of IV magnesium.  Heather has become a real pro at hooking the IV up to my line, which, if you didn't know is a permanent-ish cord that goes directly into my jugular, comes out of my chest and has three separate lines for IVs:


You can see the cord here, but I'll spare you the visual of the lines and anything further down on my body.

Floyd is back in Massachusetts with his Gramma -- we miss him, but while I'm so exhausted, things are a bit easier around here with just Orion.  I got to spend about a week with him before they went East and the time was just precious.  We played lots of piano -- well, I played, and he sang with me -- and we busted out some of the classic games.  Candyland, anyone?


Last weekend, my good friends Mike and Lou (and Mike's son) visited, helped Heather a ton in the garage/yard, looked after Orion, and watched lots of hockey with me.  Lou even got me all set with a new dual band wireless router which really improved wireless performance in the house.  On Sunday, we Skyped with Floyd and Gramma -- the ol' lappie (driving the HDTV) was killin' it on the new network.  You can see the webcam sitting on the left speaker under the TV.  Click for larger pic.


One thing that continues to be a pretty major issue is eating.  It's just hard.  My appetite is still down and my taste buds are a little shot.  Nothing is appealing to me.  In my head, lots of things are appetizing -- I dream of prime rib with horsie sauce -- but when you put most savory stuff in front of me, I just can't eat it.  Mike and Lou got me a cute present which pokes fun at my taste bud sitch.  Thanks, guys :)


Two things I'm able to stomach are soup and salad.  Heather made a great salad last night.  It was one of the biggest (and most nutritious) meals I've eaten since I got home.  Eggs and avocado.  Yum!


One last thing before I go back to the hockey game.  I've been catching up with some old friends (by phone) over the last couple weeks and it's been incredible.  LY: I loved our conversation and look forward to the next one.  Dougie Doodles: we need to chat soon.  If anyone else wants to chat voice -- MicroL? -- just drop me a line and let's figure out a time.  4p or 5p my time is usually pretty good (and tends to work for East Coast folks).  Not on Flyers nights, of course.

I will kick its ass,

-jg

Friday, April 15, 2011

I like to be Here When I Can

Resting in my own bed. Phils on the iPad. Everyone wearing #42. Bedroom window open. Sunny, mild, with a nice breeze outside. No more hospital smells. Oswalt Ks the first batter.

Today is about 1000% better than yesterday.

iwkia,

-jg


Sent from my mobile device

Thursday, April 14, 2011

Dragged Down by the Stone...

Great. Just $@(!?#% great. I have a 10mm kidney stone. Exactly what I need. At least now we know why I was in so much pain last night. Now the question is... what do we do? Do I have to stay here? Can they break it up? 10mm is way too big to pass naturally.

I am seriously going out of my mind. The are no words to describe my anger. Serves me right for having any kind of expectations about today. Go home, see my kids, watch the Flyers, sleep in my own bed. That's lookin like it's gonna be 0-for-4 right about now.

Unbelievable, just un-be-f*ucking-lievable.

iwkia,

-jg

Wednesday, April 13, 2011

There's a Little Black Spot on the Sun Today...

Absolutely excruciating stomach (gas?) pains today. And I mean excruciating. I have not been in so much pain, for an extended period of time, since I broke my collar bone (in two places) in seventh grade.

Every time we thought we had it under control, it came back stronger. The worst came after Heather left - she was here to get the big lesson in home care since I'm going home tomorrow.

I literally got on my hands and knees (on the bed) and tried deep breathing while moving my hips around, trying to contain the pain and the accompanying moans/screams.

Finally they gave me some IV med, dilaudid, which put me on a different planet but took away the pain. It's been a couple hours, so it's wearing off. I feel a tiny twinge of pain, but nothing like before. I'm praying hard that it doesn't come back. Not sure I can take it again. Gonna get another dose of dilaudid if I can.

OK, that's it for now. Sorry for the downer of a post.

iwkia,

-jg

Sent from my mobile device

I Am So Tired

Zero energy continues, so this post will be very short. Somehow, some way, they are sending me home tomorrow. yeP!, you read correctly, I'm finally going home. I'm barely strong enough to stand up but I can't wait to see my kids and sleep in my own bed, so I'll make it.

It's going to be a long, long road to recovery (several months) but at least I'll be able to eat. I cannot even look at a UCSF tray without feeling sick now. Everything just looks and smells gross. Fortunately, Brown brought me some Won Ton Soup last night -- I ate it all. Should do me for a day or so.

Heather is coming in a few hours for a tutorial on how to take care of my central line and deal with my meds. Need to nap so I'm ready.

Let's see how you do against Halladay, Jayson (ya puke!)

iwkia,

-jg
Sent from my mobile device

Monday, April 11, 2011

So Much to do, So Why Why Weigh?

Blogging Tunes: Howard Stern - 4/5/2010 / TPiR

Today is day +12 and we are in full recovery mode.  My WBC counts have skyrocketed from < 1.0 to almost 9 in the last two days. ANCs (neutrophils) aren't back yet, but they are probably in the 4 range.  This means that the new stem cells have engrafted and have begun producing white cells.  This is a major milestone, I'm "ahead of the norm" according to my Nurse Practitioner, and if all goes well, I should get to go home by the end of the week.  Of course this "go home" won't be like last time where I was biking within a week.  I'm going to be tired and on major meds, potentially even IV, for quite some time.  I'll also need to go UCSF twice a week (Mondays and Thursdays) until around day +100 -- the big milestone: when they do a  bone marrow biopsy to see what's there.

(White Blood Cell count went from 0.3 to 0.6 to 2.8 to 8.9 in the last few days)

So the news is good, but it hasn't been all fun and games.  The initial chemo took all of my energy (and my hair) and they've been giving me this other chemo through out the recovery -- methotrexate -- which makes you feel like ass.  In fact, this weekend was extremely rough: major mouth and throat pain; bone pain, low appetite, weight loss, extreme fatigue, congestion, and then some.  If it weren't for the morphine and the oxycodone (which isn't quite the same as oxycontin) I don't know how I would have gotten through it.

The plethora of sports on TV and the internet were extremely therapeutic as well.  I watched just about all of The Masters and every Phils game (other than the Saturday Fox blacked out one -- listened to that).  Even watched some NYY/BOS and some Giants with Brown.

Speaking of Giants, can I just point out the difference between Bay Area sports writers and Philly sports writers?  Look closely at this picture (click it to enlarge.)


The fan the caption mentions is wearing an EAGLES cap, for God's sake.  Now I can't imagine a Phillies fan wearing a ton of Phillies gear with a Niners cap, but if there was some such fool, I can guarantee you the Philly paper would not feature him.  Ah, Bay Area sports - enjoy your one championship.  That's all you're getting for at least 10 years.

What else?  Oh, I said the chemo took my hair.  Here's a photo from yesterday:

(I'm starting with the Man in the Mirror)

OK, incredibly tired.  Gotta nap.

I will kick its ass,

-jg

Friday, April 8, 2011

Well I'm... Hot Blooded

... It aint no fun,
I got a fever of a hundred and one.
Antibiotics; losing my hair,
I'm hot blooded, I'm hot blooded.


Day +9 is serious nadir-ville. Fever spiked last night -- first fever of 2011. My head felt hot and my legs were cold. Like the mouth issues, fevers are very common given the state of my immune system. Chest xray was negative; blood cultures still out.

One little trick is to put an ice pack on your neck. So if you're on your side, you put your head on the pillow and there's a natural space for the ice pack between your neck and the bed. Cools your blood a bit.

Appetite is reduced, and mouth still hurts so I'm using the viscous lidocaine early and often. Also just took 5mg of oxy. I really try to stay away from pain meds, but I need a day to just relax and feel better.

Another day of golf, baseball, and naps for me.

(left to right: golf on tiny TV, baseball on the iPad, blog/email/IM on lappie)

Oh and WTF is up with Pia getting voted off? She's 10x better than that twit, Stefano. Weak.

iwkia,

-jg

Sent from my mobile device

Thursday, April 7, 2011

BlackBerry singing in the dead of night

Blogging Tunes: Sportcenter / Masters coverage

I am no longer cell-phone-less.  yeP!  Blackberry Bold for me.  OS6 is very slick.  Major changes from 4.5. (which was the highest OS my old phone would run.) Crazy how essential the smart phone is for communication.  If anyone sent me texts over the last week, please resend.

OK, onto the update.  Today  is day +8 and I'm approaching rock bottom (in terms of counts.)  In fact, we started the Neupogen shots yesterday, so hopefully my counts will start coming up on Monday or so.

I am feeling extreme discomfort in my mouth :(  It's not individual sores like last time, it's more like my whole mouth (inside of cheeks, under the tongue, areas where wisdom teeth used to be) are all sore.  Apparently, it's the result of oral mucositis -- which while extremely annoying is totally expected.

A side effect of this is that it's really hard to open my mouth (yeah, yeah, hard to believe, right?)  Well, eating has become very challenging event.  I need to take very small bites and chew only in the middle of my mouth.  It's harder than it sounds.  Try taking a normal bite of food and chew it up without using your molars or the sides of your mouth.  Betcha can't do it.  Other painful events: yawning; sneezing.  Oy.

Also, the fatigue has really set in.  I'm extremely tired all the time.  Someway I'll find a way to do some laps later -- maybe after a nap.  But with the Phils and the ESPN Masters coverage starting at 12:00p PT, it's gonna  be hard to drag my sorry ass out of bed.

Lastly, since we're about 14 days from when I started the pre-BMT chemo, I've noticed some hair starting to fall out.  At this point it's unclear how much I'll lose, but I'm guessing a significant amount.

On a comforting note, Heather's mom's friends "Greg and Nancy" sent me this hand sewn Afghan blanket.  This pic doesn't really do it justice -- it's much brighter with vibrant colors:


Thanks, Greg & Nancy.  Awesome blankie!

I'll keep y'all posted on the counts and what we learn about the engraftment (sp?)  Right now we don't know very much, but a week from now, we should.

Thanks for the continued love and support.

I will kick its ass,

-jg

Monday, April 4, 2011

I Light my Torch and Wave it for the...

Blogging Tunes: Phish - 12/31/2010

Today begins one of the most crucial weeks of my life.  It's "Day +5" -- five days after my stem cell transplant. By the end of the week, my counts should bottom out, which means we'll be at the highest risk for infection and other such complications.  The goal: no fever; no infection; no nothing.  We want boring, boring, boring.

Once my counts are really low, they'll start up with the Neupogen shots to try to stimulate cell production.  That means, by this time next week, hopefully, my counts will start to come back like they always do.  But this time it will be the new marrow doing the work.  In other words, it will be my donor's immune system coming online.

HOW CRAZY IS THAT?

Seriously, think about that for a second.  They used a killer dose of chemo to basically nuke my immune system and all my bone marrow, then they just give me all these stem cells -- in the form of a normal blood transfusion -- which somehow find their way into my bones and start producing a new immune system.  It's just so wild.  But I'm tryin' not to focus on how weird it is, and instead focus on making sure those stem cells do the right things: find a new home; and don't go attacking shit you're not supposed to.

In other news, my old Blackberry is a lost cause, so I'm getting a new one: a Bold 9650 from work.  Should have done that a long time ago.  I really miss having the camera -- these photo-less blog entries aren't all that exciting.  Had I not lost my BB, I could have taken pictures of the sweet-as-she-is-lovely Laura Hess who came to visit me Sunday.  Laura was part of the original Kezar crew -- gotta love a girl who digs The Eagles as much as I do, but she moved to LA a few years ago.  Ahhh, I got a pic.  Click for larger image.

(The ol' crew at The Kezar Pub - where's Matty and Raff?)
Not sure who took this pic, but it's perfectly timed while we're doing the "A" of the E-A-G-L-E-S chant.  Lots of good times at that place before we all had kids.  Was great to see ya, hon.

Best visit of the weekend, of course, was Heather.  We watched Get Him to the Greek.  Friggin hilarious.  Come visit soon, monkey. :)

So how am I feeling?  Pretty darn good, all things considered.  My Hickman Line is totally healed, I haven't had much nausea, and my appetite is actually OK.  I'm still pretty tired, but I've gotten used to that.  I'm still losing weight, so I've taken to Power Bars for snacks.  It's weird, other than laps, I'm not really doing anything physical, but I guess my body needs more energy to deal with the chemo and transplant.

The key is really finding stuff to do.  This weekend was cool with all the baseball and college hoops.  Even the Flyers game was on regs Sunday morning.  Pronger better light a fire under that team, or they are going to be one-and-done.  College tourney finals tonight, lots of baseball this week and then the Masters this weekend.  So between doing laps, watching sports, playing piano, playing cribbage with Matty Nabib and Doug E (Fresh) Simon, playing Angry Birds, skimming through work mail (shhhhh!) and dealing with all the nurse/doctor interruptions, I'm actually keeping pretty busy.

On a really sad note, I saw on ESPN that this 23-year former Yale student and hockey player lost her battle with AML a couple days ago.  She never got a BMT.  Breaks my heart.  Allow me to get on my soapbox for a moment.

< soapbox >
IF YOU HAVEN'T SIGNED UP TO BE A MARROW DONOR, PLEASE SIGN UP NOW.
IT'S ONLY A CHEEK SWAB -- THAT'S IT!  CLICK HERE FOR INFO!
< /soapbox >

I got incredibly lucky -- we found a matching donor right away.  If we hadn't, that could be me you'd be reading about (well, not on ESPN.) So sign up. If you actually get selected, don't worry, it's not that bad.  Using the stem cells (vs. actual bone marrow extraction) is more and more common.  So even for the donor, it's just like giving blood.  So go on, join the registry.  You could save a life.

Aight, time for some more laps.  Things are probably going to get more interesting around here in the next week or so, so I'll keep y'all posted.

I will kick its ass,

-jg

Friday, April 1, 2011

Buy me some peanuts and Cracker Jack

Blogging Tunes: HOU@PHI - Opening day!

Today is "Day +2" -- two days after my stem cell marrow transplant and the second day of baseball season.  My appetite is still down, and the taste buds are off in la-la land, but I'm able to eat small meals and snacks pretty consistently.  My weight is dropping, but only a little.  During my induction, there were a few weeks there where I really couldn't eat at all.  Can't let that happen this time, so I'm taking marinol as needed for nausea and "appetite stimulation."

Now some of you (you know who you are!) probably just started grinning ear to ear, but believe it or not, I'm not really into it.  My head is already foggy (see chemo-brain below) so I'm trying to take as few drugs as possible, especially those that make you loopy.  And marinol definitely makes you loopy.

Only other side effects I'm feeling now are fatigue and chemo-brain.  One nap a day and a little extra Zs at night and I feel reasonably well-rested.  Still, little things like taking showers, playing piano, and doing laps tire me out pretty quickly.

[Damn, Halladay looks good].

I hope the chemo-brain effects are short-lived.  Doctors call it "mild cognitive impairment," and I've definitely experienced (to some degree) all of the items listed in that "What is Chemo Brain" section of that ACS web page.  Ummm, my life and work are crazy enough -- fast pace, multi-tasking required -- I don't need an extra level of difficulty, thank you very much

My counts continue to drop, so I'll probably get some blood this weekend or next week.  Other than that, there's really not much to report -- no news is very good news.  No fever, no other signs of problems, so hopefully the stem cells are finding there way into my bones.  All going according to plan.

Smart phone update: still no news on my BlackBerry.  If the laundry company can't find it today, I think I'm gonna have to bite the bullet and get another one.

My team of Doctors just came in and remarked how nice it is in my room.  I guess it's been pretty warm in San Francisco the last few days (not that I'd know) and since most hospital floors don't have A/C, the rooms and halls tend to get warm when it's hot and sunny.  BMT rooms are special, though -- they have A/C and some crazy air purification system to help reduce airborne risks.  From my doctor, "If you're bored out of your mind for the next two weeks, that's the best thing possible."

And finally, for today's pic.

(Raffi says: "kick its ass, jg!")

I will kick its ass,

-jg