Success! What’s Next!

So around 4AM on Tuesday morning, I woke up, put my sneakers on, and jogged to the hospital.  For brain surgery.

run map

I’d meant to run here two years ago for my second surgery, but I didn’t because I didn’t want to sweat the fiducial markers off of my head.   (These things:)

Fiducials!  (for MRI-assisted brain surgery)

Fiducials! (for MRI-assisted brain surgery)

But not having run to brain surgery was one of the very few regrets of my Cancerful years, so for brain surgery #3, I had to do it.  And to be sure that I would,  I mentioned it (subconsciously, but probably also intentionally) on this blog the other day.  And then everybody started asking me about it.  So I had to do it.  And it was only 4 and a half miles.  So I did it.

 

morning-RUN

Running! To Brain Surgery!

The streets were nice and quiet, and I listened to Rhapsody in Blue on my headphones.  Which is long enough that it soundtracked me quite nicely through the first few miles, and it even had me stomping and jumping and triumphantly throwing my hands up in the air at certain points.  And this was on the way to brain surgery.  Which was pretty cool.  So thanks, George Gershwin, 77 years later, for getting a fellow 38 year-old Brain-Chancerful transplanted Los Angelino to our hospital on time.  You never made it out, but I already knew going in (partially thanks to y0u) that I would.

Once the song was over, around mile 2.5, I called my dad in Philly and talked to him while I ran.  He told me not get hit by a bus.  I thought that was pretty funny.  And I didn’t– I made it!  And the fiducial markers didn’t sweat off either.  So that was a pretty good start.

I went into surgery around 7:30AM, under the kind and sturdy hands of the same guy who operated on my last time.  “Silly Love Songs” was again (by request) playing in the O.R. while my head was sawed open.  (Last surgery, I’d joked with him that I’d had that song stuck in my head and asked if he could remove it while he was in there, and he totally surprised me by playing it right as they flipped me onto the operating table.  I laughed my ass off as I passed out.  So this time we did it again, for old time’s sake.)

Surgery went well!  He took out all the tumor he could see, in addition to a healthy (yes, healthy) margin of regular brain tissue around it, increasing the chance of getting out as many infiltrated tumor cells as possible.  So for a recurrent glioblastoma (which is very bad) this was about as good as you could hope for it to go.

AND, while I was under, my surgeon was able to (with my consent of course) use my brain as a test subject for a pretty nifty new light-assisted surgery method they’re working on.  Essentially, it will allow them to shine a light onto your brain and analyze the reflection to much better identify which cells are malignant and which ones aren’t, right there in the middle of surgery.  Kind of like a brain bar code scanner.  Which will help them take out all more bad stuff, and leave more good stuff behind.  Which is pretty awesome.

And then, I woke up!  And (for the third time in my life) everything worked!  Hands, eyes, toes, unmentionables, and most importantly… brain!  So you can see why for me this all of this has seemed (and continues to seem) to be more magic than curse, more good luck than bad luck.  Science!  I’m alive!

Yesterday morning, I woke up again!  And I turned on the World Cup match, just in time for my surgeon to pop in and with a relieved look on his face pull up a chair next to my bed so he could watch the game with me.  And so there we sat, surgeon and patient, laughing and discussing things like soccer and what he did with his hands inside my brains a few hours ago.  So that was pretty awesome.  We’re kind of like, pretty cool friends.  (At least I like to pretend we are.)  Sure, he saves lives and everything, but…  we have the same initials!

CP & CP

CP & CP ( I was still in my underpants at this point)

But the really neat part of our post-op World Cup conversation was when we nerded out on the nifty laser-light experimental stuff he was testing inside my brain.  The technology is really good, apparently– they know exactly where they’re going with it and how it’s going to work.   They just need to work out the kinks, gather the data, and develop the best protocol.  The biggest problem they have is securing enough funding to get it from the experimental stage to a point where (very feasibly, in only a few years) they can actually be using it during EVERY brain surgery.  It’s going to make their job a lot easier.  And it will save a lot of people’s lives.  But it will cost some money to get us there.

And this is where I looked at him, and put my hand on his shoulder, and said something like “Holy shit man, you know what?  I think I might be able to help you out with that.”   See, I don’t have any money myself (hence me having to physically run myself to brain surgery ;) ) but the project I’m working on is geared not only toward helping people with cancer laugh and sing and cry and process being Cancerful, but it will also raise money for Cancerful things… exactly like this.

So I realize, sitting there in my hospital bed, one (and this is just one!) very specific way that I could actually help my pal CP–who saves people’s lives– save more people’s lives.

So I’m glad I had this third brain surgery.  And that I woke up.  And that I seem to be as clear-headed as I was last week, when I went in for that surprising (and yet not surprising) MRI.

My brain works enough that I can keep working.  And so I will.  (I am working right now, in my hospital bed, while a nurse simultaneously checks my blood pressure and temperature.)

I have been given two years with this disease.  And overall, those two years were pretty wonderful– and difficult, and pukey, and funny, and existentially terrifying, but always rewarding.  And that is already more luck that I deserved, certainly more than I earned.

And now I know I have a least a few months until anything happens inside my head again.   Maybe more than a few months.  Maybe some years. Or maybe I’ll have to do this again for my birthday in December.

Either way, I have some time.  And I think I need to make good use of it.

I smelled about 65 roses with my sister and my mom (on her birthday!) the day before my surgery.  That was a good use of Monday.

IMG_9829

That was a really great Monday, in fact.

IMG_9840

We smelled a lot of roses.

And Tuesday turned out pretty great too! I had brain surgery– and it worked!

IMG_9913

Wednesday, I rested.  And was totally dilaudid.  And some wonderful friends came and threw me a little pizza party in my room!  And we celebrated Brain Surgery Success Number Three!

And now it’s Thursday morning, and I’m lying in my hospital bed, typing this, getting ready to check out, and wondering what the rest of the day will bring.

IMG_9907

I bet it’s going to be pretty great.  It’s certainly going to be something.

And we all know what something is better than!

 

PS:  THE NITTY GRITTY, & FOR THOSE WHO STILL HAVE QUESTIONS:

- The post-op MRI showed complete resection of the new tumor mass.  There is nothing to be seen in there at the moment, other than regular brains.  This was the case two months ago however, so it could really come back at any time.  This is what I’m living with.  This is what I’ve been living with for two years now.  It’s OK though.  I’m OK with it.

- I will follow up with my docs next week, and we will discuss the next steps.  There are other clinical trials out there I might be lucky enough to trial out, and I can always go back on the same chemotherapy (Temodar) I was on before.   But I am not at this bridge yet, so I am not really worried about it, or if and when I will cross it, until I get there.  For now, it is Thursday.

- I probably won’t have another MRI for 8 weeks, since if anything is going to grow back we wouldn’t see it on a scan until after that long anyway.

- I do feel fine.  Pretty much as I did before the surgery.  Sure, the scar hurts quite a bit, but the pain killers are doing a nice job on that.  (Yes, I will be getting a safe ride home from the hospital.)

- If you don’t think it’s cool enough that I only ran TO my brain surgery, then maybe you need to find a better brain cancer blog to read.

- Despite me feeling pretty good, and being able to laugh about this, and everyone loving to tell me “you look great!”, I still need help.  And support.  And time with friends.  So any wind that anyone feels like sending under my sails to keep me moving forward as long as possible is greatly appreciated.  It’s gotten me this far, and I’d really like to go a lot further.

Thanks for reading this.

Can’t wait to go home and see Dutch!

2 YEARS + 3 BRAIN SURGERIES = I’M STILL HERE!

I had a plan for this post for a couple of weeks now.  I have had brain cancer for two years now– which is almost oxymoronic (and therefore a good thing), since “two years” and “brain cancer” don’t normally go hand in hand.

So I wanted to write something to people who have brain cancer, or are about to get it, to share some things that will probably surprise them, and will undoubtedly make them feel at least a little bit better.  (Which I know, because knowing these things would have made me feel a lot better, two years ago).

But then something happened this week that changed everything.  Something that might not make the Brain Cancerful feel so cancerful anymore.  But I’m going to write about it anyway.  I’m going to write about the good things, and the bad thing(s).

(NOTE: If you don’t have brain cancer, and just want to know what the hell is going on with me right now, bare with me for the first part.  If you do have brain cancer, and would rather not know what the hell is going on with me right now, bear with me for the second part.)

PART ONE:  THINGS YOU SHOULD KNOW IF YOU HAVE OR ARE GOING TO GET BRAIN CANCER (especially GLIOBLASTOMA!):

1) You can survive for two years.  (Maybe even longer!)  I have survived for 2.2 years, and while much of this time was spent feeling slightly shit-boxy, a lot of it was still as happy and fulfilling (actually, way more fulfilling) than most of the rest of my 38 years on Earth.  And I’m still alive!  And I feel pretty damn close to normal right now!  And sure, I may be having brain surgery again in a couple of days, but the point is:

2) This is not a death sentence.  What it is, is a “different life sentence”.  And that different life may very well be better than the one you had before.  Maybe it won’t, but maybe it will.  The good thing is– a lot of that is up to you.  Not all of it, but a lot of it.  People without brain cancer will tell you to “seize the day,” but what the hell do they know.  Get your brain cancer, and then you can tell THEM.  You’ll know what they mean even more than they do.  You’ll know when you’re wasting time and when you’re living.  In other words:

3) Stop and smell the fucking roses.  Constantly.  (Which is a tired metaphor, but is also extremely important  in both its literal and figurative senses.)  And if you don’t have rose bushes all over the place to smell like I do, do the things that make you think (and sometimes say, out loud) “Man, I love the world!  Man, the world is really fucking beautiful sometimes!”  Find that kind of stuff, and live it.  Constantly.  Because you’ll quickly learn that you’re living life WITH Brain Cancer every bit as well (and sometimes even better!) than you were without Brain Cancer.  And here’s another good way to achieve that:

4) Control the things you can control, and don’t worry about the rest.  Because the thing about the rest is… you can’t control it.  So instead of spending time worrying about that, spend your (quite valuable) time doing more of #3.  Trust me, you will be very glad that you did.

5) Yes, the treatment stuff can suck.  Losing things you’re used to having (mental and physical things) is tough.  But if you’re reading this, you are alive.  If you had brain cancer 100 years ago, you would not be alive right now.  Not even close.  You’d be very, very dead.  In fact, in a lot of places in this world, right now, you would already be dead.  You know this to be true.  So look at or think of something that makes you happy, right now, and then realize this:  YOU. ARE. ALIVE.  And so am I!  Hooray!

And if “just being alive” isn’t enough for you, then I’ve got one more thing to tell you (this is a good one):

6) You can do things that you’ve never done before– things you’ve never dreamed of doing before– AFTER getting brain cancer.  Good things.  Amazing things.  I ran a marathon, in the snow, by myself!  WITH brain cancer!  I’d never done anything like that before!  I still think marathons are weird and slightly insane (who the hell needs to run 26 miles?!) but I did one, with brain cancer.  And I never would have done it without brain cancer.  And that makes me happy.  And proud.  And even better (since I’m a writer)–  I have written things (this blog being one of them) SINCE getting brain cancer that I am more proud of than anything I’d written previously.  How about that!  A marathon, and a movie, and a blog– oh my!

So to reiterate:  THIS IS NOT A DEATH SENTENCE.  Not even close.  Even if you are going to die from it.   And a lot of us with the Brain Cancer will die from it!  But everybody has to die from something, right?  Speaking of which…

PART TWO: MY CANCER IS BACK, AND I AM HAVING BRAIN SURGERY #3 ON TUESDAY!

brain-surgery-3

But this does not mean I am going to die!  In point of fact, it means the exact opposite.  My cancer has reappeared, but I am having brain surgery on Tuesday to get it OUT of my head.  To make me live longer.  Hopefully a lot longer.  Who knows how long!  We will see!

So for those friends of mine who have sat through the cliché life-affirming self-help messages above, here are a dozen pertinent details, in short order:

1) I had an MRI on Tuesday, which showed new “cancer” growth, since the previous MRI 2 months ago.  Here is what it looks like (it’s that small white blob, bottom center):

MRI, June 17 2014

MRI, June 17 2014

2) I put “cancer” in quotes because there’s a chance– albeit a very slim one– that this new growth is not cancer.  It could be scar tissue.  Or silly putty.  Or chocolate pudding.  But it’s most likely cancer.  They will not know (they can not know for sure) until they crack open my head, take it out, and run tests on it.  So that’s what we’re going to do.

3) How cool is it that I’m having my THIRD brain surgery!?

4) This came completely out of nowhere.  It wasn’t there 2 months ago, and now it is.  This is actually very normal for GBM.  Maybe I will have this surgery, and it will disappear again for 2 more years.  And then it might pop up again.  So it goes.  These are the rules of this particular game.  I don’t mind it so much!  Kind of way more into paying attention to the “being alive” thing at the moment.

5) You might know that I’ve done radiation, chemo, and a trial vaccine.  This does not mean that any of those things failed– or even that I got the placebo vaccine.  All 3 of those things may have gotten me this far.  There is no way to know.  The important thing is that I HAVE gotten this far, and we will continue to do what we can to go further.  Right now, that means having brain surgery.  Number three!

6) I’m very very lucky to have this option.  The best way to remove cancer is to physically get your hands in there and take it the fuck out.  If I was old and fragile, or if the cancer was in an inaccessible place, this wouldn’t be an option.  But I’ve recovered really well from my previous two surgeries, and the cancer is in a relatively good spot, so my doctors pretty much said “Dude, if you’re up for it, DO IT.  If you CAN do it, do it.”  And I know that I can do it, so I’m totally gonna do it.  It’s gonna be a blast!

7) The new growth is in the empty cavity where the first tumor was.  It has not spread to 5 different places in my head (which would have been the worst case scenario, and which I am VERY relieved is NOT the case.)  It has also not burrowed very deep into the rest of my brain.  Yet.  Which is why it’s important and convenient and extremely useful to have surgery as soon as possible.  My surgeon is confident that he can get it out nice and easy– and apparently in half the time as my previous two 6-hour surgeries!

8) All this optimism isn’t to say they will get all the cancer out.  But maybe they will.  We’ll see.  Better to have one option than none, and right now I have a very good option.

9) Brain surgery #3 will happen Tuesday morning, June 24th, at 7:30AM.  My mom and my sister will be there.  And probably Dutch.  “Silly Love Songs” will be playing over the loudspeakers in the O.R.

10) Assuming all goes well (and I’m pretty sure it will), I will spend one night in the hospital and be home the next day.  If you would like to come and say hello while I am in the hospital, that would be grand.  I’ll probably be awake and in my room by Tuesday afternoon.  You bring the champagne, I’ll supply the morphine.

11) One of the main reasons I’m so excited about this brain surgery is that I really wanted to jog to the hospital for my last one, but didn’t get to.  This time I’m going to do it.  I’m going to run to the hospital for my brain surgery.  I may or may not also run home–  that part is up in the air right now.

12) The timing of this whole thing could NOT be better.  And I am NOT being sarcastic.  I just finished (just a few days before getting my MRI!) a movie… a musical… that cures cancer.  It’s done!  And I’m still not!

So I’m going to go have brain surgery on Tuesday, and after that I’m gonna do a whole bunch of awesome stuff.

Thanks to everybody for getting me this far.  It sounds insane, but it’s been really fun.

And there’s still a lot more to come.

So stay tuned!

Return To Kowloon, Part 5: The Pilgrimage of Saint Teresa

PREVIOUS POST: Return To Kowloon, Part 4: Finally Returning to Kowloon

As my mother pointed out when we arrived for the first time at this hospital, Saint Teresa is the patron saint of headache sufferers and writers.

Holy Kowloon, I couldn’t have picked a better hospital!

So it made sense to go back.  They saved my life, they treated me well, they had really good fried rice, and they cut a few grand off the final bill so I didn’t have any hiccups with my insurance.  Overall, a five star hospital in my book of hospital ratings (which only includes 2 hospitals, both of which have 5 stars.)

So as I walked up Argyle avenue, for the first time in two years I could see her standing above me– exactly as I had remembered her:

ST TERESA OUTSIDE

Those are little bits of brain tumor she’s scattering down from the wall…

And as soon as I got inside, she was right there to greet me!  Even holding a pink rose for me– one of my favorites.  I’ll you, that St. Terry really knows how to make a guy feel welcome.

St Terry

 

So we chatted for a few minutes, talked about the new season of Downton Abbey, and I thanked her for watching over me all this time.  She chastised me for not blogging enough, but she’s really psyched about the movie project I’m working on.  She said she wants “that chick from Avatar” to play her.  And I couldn’t disagree.

But anyway, she had to get back to work so I ran upstairs to the 8th floor with a lump in my throat, and there I saw it!

HK hospital hallway

My Home Away From Home!

This is where I lived for a couple of weeks, where I would try my best to sneak past the nurses station in running sneakers and shorts and if caught try to convince them I was just going down to Starbucks for a cup of tea.  (Saint Teresa has her own Starbucks.)

And guess what?!  Many of them were there!  MY nurses!  The absolutely wonderfully caring and compassionate and professional women who made me feel at every instant in this place that I was being cared for.  That all the very best things were being done for me.   Although they didn’t allow me to sneak beers in.  OK wait one time they did.

AND THEY REMEMBERED ME!  AND I REMEMBERED THEM!  And I even got to see one of my favorites, who was so shy she wouldn’t let me take a picture of her.  (But I got one anyway.  That’s her on the right with the red hair.)

IMG_9077

And here are two of the other wonderful women who kept my head in one piece way back when, and who i owe for even being able to think about a Return to Kowloon…

NUrses 2

So now, after all that walking, I found myself  conveniently hungry.  Fried rice!
So I bolted to the cantine. (Somebody was occupying my room, so I couldn’t eat in bed like the old days, unfortunately.)

3:08pm – St Teresa’s Cantine

At the cantine, just ate some delicious rice with pork that is almost as good, but they don’t have the friend rice ready until 5pm.   Good news is I don’t have a brain tumor.   And I’m allowed to leave here whenever I want.  And if I don’t get the fried rice this time… I can always come back!  I love this place– all they do is treat me nice and save my life.

not mushroom fried rice, but not too shabby!

Not mushroom fried rice, but too shabby.

And right there, from the widow in the cantine, I could see that mountain out the window… that one I always wanted to climb, every single day I lay in my hospital bed.

Lion Rock - it's the highest bump on the right side

Lion Rock – it’s the highest bump on the right side.

I already have my sneakers on…
and I bought those cheap shorts and  backpack…
all I need is a bottle of water and maybe a cold beer and…

I think I’m gonna go climb up that mountain right now.

Because I am HERE.
And I am ALIVE.
And I CAN.

lion rock distance

Here I go. Up to THERE.

5:56pm – Several Hours Later — Lion Rock Park

After about a 4-5 mile run/walk/hike through the city from St Teresa’s, you reach a Buddhist monastery at the edge of the park.  Just walk up this last excruciatingly steep block, and make a left on that cement staircase up there at the end…

buddhist monastery

And from there, you hit jungle.
Like real, dense jungle.  On a 70 degree incline.
But it’s beautiful.  And quiet.
Suddenly the city of 7 million people below disappears into a faint whisper.

Just follow the fuschia ribbons…  (Every time you think “Am I really doing this?” or “Am I going the right way?” you’ll see another one.)

ribbon 1

And once I was about halfway up the mountain, at least 1,000 feet above Saint Teresa’s, I saw another sign:

dont go sign

Little did that sign know, those are the same sneakers I used to run a solo marathon in Newfoundland.  (Did I really run a solo marathon in Newfoundland?)  This hike wasn’t a marathon, but with the hills and the views and the emotional subtext it kind of felt like one.  So there was no way me and those sneakers were gonna get stopped by a sign.

So we looked for the next ribbon (there it is! right up there!) and up we went!  (“We” being me, my sneakers, and my t-shirt.  And Dutch the Dog, in spirit.)

up to there!

Up to THERE!

And when we got there, this is what it looked like:

The TOP

Which was pretty great.  So I drank a beer.

mountain beer

And four bottles of green tea.  (I was thirsty.)

Look mom!  You can see Saint Teresa’s from here!

Look Mom!

And that is why I came back here.

I came back  to go to a place I’d never been to before.

And now that I am here, on top of Lion Rock Mountain, standing on the very place I had stared up at every day those two years ago–  what do I do now?

I scream at the top of my lungs.  To that guy down there with the bandages on his head.  To tell him that he can get up here one day, if he just tries.  Really hard.  If he doesn’t give up.  And if he keeps up doing all the things that feel like they’re important, no matter what stands in his way (clouds, nausea, diminished cognitive capabilities, deep daily existential crises, etc.).

I told him he could– he WOULD– get up here on this mountain.  All he has to do is keep going.  Because here we are.

And then, we decided (me and that guy, 2 years ago, looking up at me) that we should leave something behind.  Something for us to mark the fact that we made it back.  On our terms.
And it was beautiful, and sun shiney, and it felt fucking great.

shirt1

So I pulled off my (very sweaty) I FLEW TO HONG KONG AND ALL I GOT WAS THIS LOUSY BRAIN TUMOR t-shirt (which I actually designed in that hospital bed that I can see from here).  And I tied it up with a fuschia ribbon, and I buried it.
On the top of Lion Rock Mountain.

I flew all the way back to Hong Kong, and all I left behind was my lousy brain tumor t-shirt.

shirt ribbon

It’s still there, under this rock, in case you ever want to find it.

And that is why I came back here.

I came back here to leave something behind.

 

NEXT POST: “Escape From Hong Kong 2: Leaving Things Behind.”

Return To Kowloon, Part 4: Finally Returning to Kowloon

PREVIOUS POST: Return To Kowloon, Part 3: Return to Hong Kong

Monday, April 28th, 11AM
On the Star Ferry to Kowloon

Crossing the harbor to Kowloon… to go find Saint Teresa.

Being on this ferry feels like being in Atlantic City.  
Old timey English maritime style with life savers, diesel engines, and painted over painted over paint.  
Feels like home.  
View’s a lot different though.

Star Ferry, the best and slowest way to Kowloon

Star Ferry, the best and slowest way to Kowloon

12pm: Tsim Sha Tsui

Short walk from the Ferry Terminal, through Tsim Sha Tsui, to the metro.
I notice I’m taking my time getting to where I’m going.  I could’ve just taken a cab from the hotel.
But with the walking, and the boat, I find I’m turning it into a pilgrimage, without even realizing it.
Until I just realized it.

This is why I am here.

This is a pilgrimage.

It’s a long way to come for fried rice, but nobody does it like Saint Teresa’s.

12:15pm: Fa Yuen Street Market

Neat place, that I hadn’t seen before.
Clothing stalls and junk stalls and no cars to run you over when you don’t look the right way.

HK street market

God it’s so nice just to be here.
Just to be.   Here.

Just looking around
just like a tourist
without even a headache,
with nothing to worry about except
what to
eat for lunch
and if 
I should buy
a cheap pair of shorts
just in case
maybe I’ll go
for a hike later.

I am cured right now.

This is why I’m here.

This is fun!

And that’s it.  Fun.  That’s all it is.
And man is that a big fucking relief.

And then, I saw another sign.
A sign, above a clothing stand, that said “CP FASHION.”  My initials.
And even more amazingly, they were selling a knock off version of my “I FLEW TO HONG KONG AND ALL I GOT WAS THIS LOUSY BRAIN TUMOR” t-shirt!  For only $59HK!

IMG_9035
Who the hell else is going to buy that?

[Note: I may have secretly snuck that shirt onto the rack.  But that lady really checked it out for a minute.  Who knows, maybe she flew all the way to Hong Kong and got a brain tumor.  At least now she can get a lousy T-shirt too.]

12:43pm: Outdoor Flower Market

I bought a cheap pair of shorts!  And an even cheaper backpack!
God is this so much fun!
And that is ALL that it is… just a nice fun day in a nice new place.
Fun smells and sounds and signs, like it was supposed to be when I came here 2 years ago.  

And it was that for a little bit, but it mostly a lot of a Very Big Something Else.

Outdoor Flower Market

Walking the Outdoor Flower Market

I’ve been on this street before.  Two years ago.  With my parents.
And we were walking the opposite direction, and things felt a lot differently than they do right now.

I think I’ll go sit down on that bench and write.
We didn’t sit on those benches.
They look nice.

And so I sat.  And I could see a mountain in the distance.

sitting in flower park

That’s the mountain that I stared at for weeks from my hospital bed.  Wishing every day I could be up on top of it, and knowing there was very little chance that was ever going to happen.

When I just looked at that mountain, I breathed a sigh of relief that felt so deep and calm and relaxed and NORMAL  that it made me cry.

And this is why I am here:
To experience this place on my own terms.
Only with wonder, and discovery.
As I meant to the first time I came.

Some cloud has just lifted from my head that will never come back.

It is gone forever.

I am alive.

And this is why I came here.  

To be alive.

 

1:24pm: Yuen Po Street Bird Garden

A mosquito bit my ankle back in the flower park.  I almost hope it gave me dengue fever,  the irony would be too sweet.

But here I am in the bird market now.
A Peacock in a bird market.
Staring at a parrot.

"I remember you! You're the peacock with the brain tumor!"

“I remember you! You’re the peacock with the brain tumor!”

He’s much older than I am.  I’m jealous of that.
He just winked at me after I wrote that.  Twice.
I think I may have seen him the last time I was here,
with my parents…

They were so worried.
We were walking the opposite way.  

We had walked from the hospital.  
My head was bandaged,
not more than a few days
from having it cracked open.

It felt a lot different this time.

That old parrot just took a drink, and a poop.  
Puffed up his cheeks and showed me his tail.  
He remembers me.

And so with a wink and a nod to the parrot, I continue around the corner, a few steps further, and…

I have officially returned to Kowloon.

Welcome Back, Peacock!

Welcome Back, Peacock!

Thanks, it feels great to be back.

The End?

But this isn’t the end…
Just between those trees…
I think I recognize something in the distance…
A nice old lady’s place I crashed at for three weeks about two years ago.
Lots of nuns.  And angels.  Nurses.
They saved my life.
And they made really good friend rice, with these black mushrooms that I haven’t been able to stop thinking about.

 I can see my old home from here.

Next Post: Return To Kowloon, Part 5:  The Pilgrimage of Saint Teresa

Return To Kowloon, Part 3: Return to Hong Kong

PREVIOUS POST: Return To Kowloon, Part 2: Prelude, Thanks, and a Possible Seizure

So here we go with the “real time” notes & pics from my  few days in Hong Kong…

Saturday April 26th, 1:39PM
Hotel Room, Hong Kong Island.
“It feels really fucking cool to be HERE, thinking about the movie and working on the movie.  The movie that started here and contains so many places and faces and feelings and ideas from here, that I’ve been thinking about so much for two years and now I’m actually HERE. It  feels so right.

IMG_8860

It feels like I’m being led somewhere… From Hong Kong to Hong Kong.  Let’s see where we’re headed.  So whatever you do, DO NOT STOP!

 

Sunday April 27th, 7PM
Long Fu Shan Country Park

Convinced my friend to climb up to the top of the closest mountain to where we are staying– the same mountain where the picture at the top of the BrainChancery website was taken.  Last time I was here I had a tumor in my head, and it hurt.  This time, not so much.   Both times, had to do a little convincing to get my friends (Erik, the 1st, Ludo, the 2nd) to follow me up to the top.

Here’s the picture we got this time.  A little darker, but at least I had a new clever t-shirt to wear.

Top of the Mountain 2

Top of the Mountain 2

NEXT POST: Return To Kowloon, Part 4: Finally Returning to Kowloon

Return To Kowloon, Part 2: a Spoiler, a Thank You, and a Possible Seizure

PREVIOUS POST: Return To Kowloon, Part 1: Guess What I Just Did?

The Spoiler:
I am no longer in Hong Kong, or in Kowloon.  Because I am home.
I flew to Hong Kong… and back!  And I didn’t even get a lousy brain tumor.
And for the next few posts, I’d like to share some excerpts from my journal, things that I wrote while on my trip these last few days, and the photos I took while I was writing them.   A real-time travelogue kind of thing, if “real-time” means  “a few days ago.”  Let’s just pretend it’s happening right now as you’re reading it.  Hong Kong’s in the future anyway, right?

The Thanks
But before I begin, I’d like to first repeat my humble and deeply felt thanks to the generous and loving friends who helped me get back to Hong Kong.  I couldn’t have done it without you.  And now that I know how important this trip was for me, I can’t tell you how glad I am that I did.  And I can’t thank you enough for getting me there.  So thank you again, friends.  I made it.

The Smoothie
SHIT.  Just as I was typing the last few sentences, I suddenly felt a smoothie (seizure aura) coming on.  (More on smoothies here and here). I’d rather finish writing this post than have a seizure right now, so just to be safe, I swallow a few Ativan (anti-seizure drugs), alert a friend or two to check on me, then I sit myself safely down on the couch and try to keep typing while ignoring the weird hallucinatory swirling soundsin my ears.  But the Ativan should kick in soon…

1o MINUTES LATER:

…and it does.
Whew.  Feeling far less smoothy, and far more groovy now.  No seizure coming.  I’ll be fine.

And if you’re reading this post, that means I managed to stay awake and unseized long enough to keep writing this post, and to post it.

To be clear: I am including this whole smoothie episode as it plays out in real time –really in real time this time– not to gin-up suspense for my Return to Kowloon (it’s coming,  I promise), but rather just to share the experience of someone living with brain cancer.   This happens sometimes.  It’s one of the things you have to get used to.

But I’m happy to report–and this is an important point– that the smoothies popping up for me every once in awhile are now far more likely related to having had 2 brain surgeries, as opposed to having a new brain tumor.  In other words, these potential seizures are probably not “new cancer” related.   While they are still really worrying (and really inconvenient at times) my last few scans seem to show that the cancer isn’t having anything to do with them.

So here we go: on to the next post… Return To Kowloon, Part 3: Return to Hong Kong

Return To Kowloon, Part 1: Guess What I Just Did?

I Flew To Hong Kong.  Again.

I flew to Hong Kong.

And this time, despite the T-Shirt, I’m totally sure I’m not gonna get a brain tumor.  Hell I’m so sure of that, I’m not even going to bother to get an MRI while I’m here!

“But isn’t that what you normally do when you’re in Hong Kong?” you say, quite perceptively.

“Yes, that is historically true,” I reply, “but why would I need to, when I just got an MRI yesterday in LA, and it looked exactly like this!

Clean as a whistle!

Clean as a whistle!
(If that whistle was made of healthy non-cancerful brains.)

Not a spot of cancer to be seen!   Just like the last one, and the one before that.  Hooray!

And guess what else happened yesterday?  I got my last (and arguably most painful) TRIPLE SHOT IN THE ARMPIT!

IMG_8847

 

See that little bulge under my girlish armpit hair?  That’s the ICT-107 Brain Cancerful Vaccine (or sugar water, depending on my luck) seeping into my lymph nodes.  For me, the most painful part of having one of the most deadly forms of cancer has been getting needles in my armpit, and then having to hold my hand up in the air for 15 minutes afterward.  That’s how lucky I am, and why you will not often hear me complaining about any of this (although if you’re scoffing right now because you have heard me complaining– hey, step off!  Have YOU ever had 3 needles stuck in your armpit and then had to hold your hand in the air for 15 minutes afterward?  Yeah, didn’t think so.)

So anyway, yesterday I got a clean MRI, and I got my last shot of (hopefully) magical armpit juice.  And since it’s almost exactly two years from the day that I was checking out of this place…

Saint Teresa's Hospital, Kowloon

Saint Teresa’s Hospital, Kowloon.
April 20, 2012.

… I figured this might be a good time to go back to Hong Kong.

But why the hell would I want to Return To Kowloon?  (As my mother asked, quite expectedly and quite hilariously, when I told my parents on the phone yesterday.)  OK, I’ll tell you why.

See, there was a moment when I was here two years ago (two years ago!), post surgery, when I was walking around somewhere weird (which is everywhere here), looking around at the weirdness, and thinking to myself…

“I wonder if I’ll ever come back to this place.”

My gut immediately said “Probably not.”  The Law of Probability (ungoverned by my gut) said (quite rudely) “No fucking way, Peacock, are you kidding?  You’ll be lucky to survive the flight home!  How about settle for Ocean City, New Jersey.  I might be able to get you back there.  Even that’s only a 37.24%”

Now I’m not one who likes to be told what I can’t do, so when all of this rushed through my head, it made me sad.  It put a limit on my life.  It put a cap on my hope.  It was the beginning of the glass ceiling that all of us Cancerful People feel above us at almost every moment, when we’re feeling uncured.

But then–BUT THEN!!– my next thought was a nice one.  My next thought was this, filled with wonder and unknowing and certainty and hope:

“If I ever do find myself in this place again, if I ever am able to come back to Hong Kong… that will mean that something really really good happened.”

And so it has.

And so I decided to come back.

HK flight note

Touchdown!

Touchdown!

And after I landed (safely!), just when I was leaving the airport, I SAW A SIGN!

HK sign

 

And when I saw that sign, I thought to myself “I’m so sorry, sign.  I hope you had a good service life.  I’m just now reaching the beginning of mine.”  And that thought made me happy.

And so now I find myself back in Hong Kong (miracle!), feeling great (miracle of miracles!), working on a movie.  A movie that cures cancer. (Miracle of miracle of miracles!).

HK Laptop

And if those first two things could happen, then why not the last one too?

Speaking of signs, when I went for a walk around the block about an hour ago, I saw another one:

a good sign

a good sign

That’s a pretty damn good sign.

(And if you’ve ever wondered where I got the title for this blog, it’s not from there.  That is a complete coincidence.)

More signs to inevitably come tomorrow, when I Actually Return to Kowloon.

So stay tuned: I almost guarantee you that I am going to end up in the hospital!

 

PS: A humble and deeply felt thank you to the generous and loving friends who have gotten me this far.  And by “this far” I mean both “to Hong Kong,” as well as “still alive.”  I certainly could not have done (or even dreamed of) any of this without yous.

NEXT POST…  Return To Kowloon, Part 2: a Spoiler, a Thank You, and a Possible Seizure

Brain Chanceiversary 2: Another Rhapsody In Blue!

So I think the ghost of George Gershwin is haunting me.

I woke up this morning, April 10th, 2014, and realized it was my 2-year Brain Chanceiversary.

This was the day, two years ago (TWO YEARS AGO!) that I had my first brain surgery, in Hong Kong.  This was the day that it all started; the day that I began my ongoing Dance with Cancer.  This is my cancer birthday.

So I woke up this morning (hooray for that!), and the first thing I did was turn on the radio, as I normally do.  It was tuned to Classical KUSC (91.5), as it normally is.

But here’s the weird part: the instant– the exact instant– that the speakers came to life, guess what I heard?

I heard a clarinet.  Like somebody had cued it up for me.  Like it was the soundtrack to a movie.

“No way,” I thought.  This was a clarinet that I recognized.  This was a clarinet you’d recognize too– it’s possibly the most recognizable clarinet ever recorded.   So why was it so weird for me to hear it this morning, of all mornings, on my brain cancer birthday, at the exact instant that I got out of bed and turned on the radio?

Because it’s the clarinet that plays at the very beginning of George Gershwin’s “Rhapsody In Blue.”

The same “Rhapsody In Blue” that I mentioned in this post back in September.

The same “Rhapsody In Blue” that was written by a guy who died at my hospital, at my age, of the same brain cancer that I have right now (George Gershwin, 38, GBM).

The same “Rhapsody In Blue” that (because of all of the above) I used as the subtitle and theme song of the movie I have been writing for the last year, which I hope will not only cure my own cancer, but a lot of other people’s as well:

MOVIE TITLE

And as if all of that wasn’t coincidental enough,  here’s where it gets really weird:

I was just on a beautiful BBC radio program called “Soul Music” last week, talking about this very song, and what it means to me.

soul music

If you’d like to listen to it, you can find it here (the program begins around the 1 minute mark):
http://www.bbc.co.uk/programmes/b03zb49y

gershwin

So either I’ve been following George Gershwin around for the last two years, or he’s been following me.

Either way, I’m happy to have his company.

And grateful that he came by to say Happy Brainchanceiversary.

Thanks George.

Sometimes I feel like I’m living a Rhapsody in Blue.

Death, Life, and Cancer Zombies

I’m reading a wonderful book about cancer— a biography of cancer— called “The Emperor of All Maladies.”  I would recommend it to anyone interested in both the story and the biology of this disease, as it’s filled with enough juicy facts (and plot twists!) to both entertain and to bring you well within the reach of feeling that you’re somewhat of an expert on the topic of cancer. (Not to be confused with the Tropic of Cancer— it doesn’t talk about that at all).  I’ve read a lot about cancer, thought a lot about cancer, and this book covers a great deal of it, in great detail.  I’m thoroughly enjoying it.

Gushing reviews aside (as if he needs my blurb for his front cover— he’s already got Oprah, the New Yorker, and a Pulitzer Prize), there’s something ingrained in the way he tells this story that rubs me (only so slightly) the wrong way: it’s a breathless, occasionally hyperbolic dramatist’s telling of The History of Cancer as The Biography of An Enemy.

Don’t get me wrong, I recognize the necessity of spinning a good yarn if you want to get people through 470 pages on cancer (and win a Pulitzer Prize and an Oprah Book Club mention in the process), but from the title to the subtitle and throughout the narrative itself, there’s this constant literary implication that cancer is a character: a humanoid creature with a mind, and a motive.  In other words, he anthropomorphizes cancer, and if you’ve been reading this blog from the beginning you know I don’t like to talk about cancer like I’m talking about Brandon.  And here’s why:

When you consider the gorgeous complexity of the human body (or any vertebrae, for that matter) with its interwoven matrices of different cell types and chemical types and organs and reactions and counter reactions all synchronized in a perfectly orchestrated ballet of life… the SIMPLISTIC BARBARITY OF CANCER is almost… hilarious.

So add this to the list of reasons that I take issue with turning cancer into a person, or an enemy, or even “a beast.”  If you’re going to see cancer as an evil thing with a mind and a motive— if you’re going to anthropomorphize it— you might as well do the same for saliva, or the lymphatic system (what a wonder!), or the fantastical (and fantastically functional) digestive microbiome working its ass off inside of your actual ass every goddamn day, just keepin’ things flowing without ever asking for a damn thing in return!

But we never do that, do we?  We don’t even anthropomorphize our eyes, and our eyes are a hell of a lot more interesting and complex (and beautiful and functional) than stupid cancer.  Eyes would actually be gods in our bodies if were anthropomorphizing the whole setup!  But when’s the last time you heard somebody refer to human eyes as benevolent gods bent on showing us the light, and illuminating our way, or bridging the gap between our minds and the visible world beyond us?  (Here’s a guess: never.  Or maybe in some random poem that I’m sure somebody is going to find for me.)

But if we insist on giving cancer a brain and a motive— and we do it all the time, so clearly we insist— then let me propose this: if cancer is a character in the story of our bodies, then it is only one character in a cast of millions.  And here’s the thing: it’s one of the dumbest goddamn characters in the lot!  All it does is get in the way!

In fact, one of the most interesting things about cancer is how stupid it is: it’s one of the only parts of your body that is just totally uncooperative.  But it still is (if you have it, and this part is crucial) a part of your body.

Cancer is on your team— it’s just not playing by the rules.  And it didn’t quit because it’s too old (like a heart), or because you drank too much and broke it (like a liver— speaking of which why do we never call our hearts and livers demons when they stop cooperating?)

The only reason cancer doesn’t play by the rules is that it’s been brain damaged from the start.  It was born that way.  And you’re the one who gave birth to it.  So can you really blame it?

The point is, cancer is really, really dumb— all it’s good at is fucking and making more of itself.  (Unfortunately, it’s really really good at that).  But it doesn’t even know what it’s doing it, and it certainly doesn’t have a grand plan, so don’t flatter it by calling it a “beast” or (Eyes forbid) comparing it to something as wonderful as a human being.

At best, cancer is a zombie.  But it’s a zombie whose horror comes not in biting or brain-eating, but in over-procreating.  (Think of how the English used to think about the Irish, or how some people still think of other people, because we’re all assholes.)

Look at it this way, if you insist on anthropomorphizing: Cancer Zombies just wander around aimlessly, each zombie splitting into two zombies every five minutes, eventually making just so many damn zombies that they’re eating all the food and clogging up all the highways and pretty soon you can’t even open the door to your house anymore because they’re piled up all over the lawn!  And when they break through your windows, they don’t do it with their fists, they do it because there were so many of them out there that they just got forced inside.  You can’t really blame them for over-occupying all your space— it’s just what they do!  (It’s all they do, in fact.)

So why, if cancer is a part of us, and it’s just one of the many many parts of us (and not even the most interesting one, by a long shot), why is cancer the one part that we turn into a thinking thing?  And why are we so afraid of it?

It’s simple.

Because we’re afraid of death.

We try to ignore death, but we can’t, because we know it’s coming.  (It’s definitely, positively coming.)  And so death lurks in the background, it has to hide in the shadows, and it gets creepy there because we don’t want to look at it.  And pretty soon, death turns into something that we FEAR.  It’s a spook in the night!

Would we fear death so much if we didn’t try so hard to ignore it?

There’s another big thing that we shouldn’t ignore (that we’re very good at ignoring) but we don’t fear at all, because it surrounds us each and every day, and (if we’re lucky) we like looking at it.  And that thing… is LIFE.

Life!  Now that’s something worth anthropomorphizing!

She’s a beautiful lady, Life.  She’s gorgeous, in fact.  With one of the most incredible faces— and the biggest heart— I’ve ever seen.  So caring, Life!  She walks beside us day after day, holding our hand even when we don’t realize she’s doing it.  Even if we tried to let go of her hand, we couldn’t.  Because she holds onto us, Life.  And it is only when SHE is ready to send us on our way that she finally releases her careful, caring grip.

And there is no need to fear that moment, because Life will take every ounce of us with her—she will carry us with her!— as she goes along on her beautiful, merry way.  We are an inextricable part of Her, and Her us, and it will always be that way.

And that’s all I have to say about that.

Hi!

I’m still alive!

Just thought I’d mention that, in case you were wondering.

A few people have asked about the blog recently, and I realized it was starting to look like one of those “Super Inspirational Blogs Written By a Glioblastoma Survivor Who Didn’t Really Survive!” that I mentioned awhile back.

So, to curtail that rumor… I’m still surviving!

And I have actually been writing!  A lot, in fact.

Just not here.

But soon, here as well.  Hopefully.

You know what’s the best thing about a ticking clock… if it’s ticking loudly enough, and you point yourself in the right direction, it can actually put wind in your sails.

(Apologies {or perhaps shout-outs} to The New Yorker “Block That Metaphor!” department.)

RUNNING-pic

 

 

PS:  Thank you to my lovely friends for the photos, and the t-shirts, and the wind and the sails.  I couldn’t do any of this without you.