My Fourth Grand Opening!

{NOTE: JUMP TO THE BOTTOM OF THIS POST IF YOU’RE ONLY INTERESTED IN THE TECHNICAL DETAILS OF MY UPCOMING BRAIN SURGERY, INCLUDING TIMES, CLINICAL TRIAL INFO, ETC., AND NOT IN THE FACT THAT I’M ABOUT TO DO SOMETHING NO HUMAN BEING HAS EVER DONE BEFORE.  BECAUSE IT’S ACTUALLY KIND OF STUPID.}

grand opening

This Thursday, early on the morning of June 18th, 2015, I am going to celebrate my FOURTH GRAND OPENING by doing something I have never done before!

It’s not brain surgery.

It’s not even running to brain surgery.

Well, it’s not JUST those two things.  Because I AM doing both of those things on Thursday morning.  But I’ve done both of those things before.

No, this time, because I am an absolute moron, I will not only be getting up at 5AM to go running, to the hospital, for brain surgery, but I will ALSO (with the help of some wonderful and talented and professional and dedicated friends who don’t have cancer-addled brains and actually know what they’re doing with their lives and somehow have not yet told me I’m a moron and should just stop)… I mean, WE will also… be shooting a film.   Of me.  Running.  To brain surgery.

And that’s something I’ve never done before!  (I don’t think anyone has done that before, actually.  And while that is totally not why I’m doing this, that is also kind of a reason to do something, isn’t it?)

Now why would I do this, you ask, beyond the fact that it’s hard to find something to do that somebody hasn’t already done before?  This is a good question.  It’s the same question I’ve been asking myself every few seconds since I conceived of this idea and convinced a bunch of people to invest their time and energy and creativity into helping me pull off such a ridiculous stunt.

Honestly, here’s why I’m doing it: because it is a ridiculous stunt.

I’m not normally one for ridiculous stunts– I tend to play it safe, even in cooking– but I’m smart enough to have realized that there’s nothing better for getting people’s attention in this annoyingly noisy modern world of ours than by executing ridiculous (or inspiring, or hilarious, or ill-conceived, or dangerous — you pick the adjective once the thing is over) stunts.

So I am doing this to get people’s attention.  (Not yours, I already have your attention.  So thank you for that.)

As you may have heard, I am making a movie that cures cancer.  And it’s (sort of) a musical.

Things are going really well with the movie — I’m working with some wonderful people on it every day, and it’s really beginning to take shape.  It’s going to happen.

But to make a movie (that’s sort of a musical) that cures cancer, I have learned that you need two very important things:

1) A bunch of people to say “yes.”

2) A bunch of money.

Now, I hate asking people to say yes, and I hate asking people for money even more.

But I believe very deeply in this Cancerful movie of mine, and so I am running to the hospital on Thursday– and making a super awesome little movie out of it– in the hopes that it will inspire people:  to say yes, and to write checks.

And then I don’t have to do any of the hard work. 😉

Now I’m sure me running to brain surgery and filming it and putting it on the Internet will also wind up inspiring a few other  people out there with brain cancer, and this does make me happy.  Because I have brain cancer, and when you have brain cancer and you see anybody doing anything other than drooling or dying, you tend to get a little excited.  But this is more of a secondary goal.

The goal is making a movie that cures cancer.

If there is a reason I have lived this long, it is to do that.

(It’s certainly not to see the Eagles win a Super Bowl, because that one appears as elusive as a cure for brain cancer.  But I do remain hopeful!)

So here I go…!

You’ll be hearing more from me after Thursday.  Unless I get hit by a bus.

*****************

HERE ARE ALL THE PERTINENT SURGERY DETAILS, FOR THOSE OF YOU WHO DON’T CARE ABOUT THE STUNTINESS ABOVE (AND YOU SHOULDN’T, UNLESS YOU’RE IN A POSITION TO SAY YES OR WRITE A CHECK, OR YOU JUST GOT BRAIN CANCER AND NEED PROOF THAT THERE IS MORE TO BRAIN CANCERFUL LIFE THAN DROOLING AND DYING.  BECAUSE THERE IS.  BUT ONLY IF YOU’RE AN IDIOT.)

SURGERY #4: “MY FOURTH GRAND OPENING!”

WHEN:  Thursday, June 18th.
– Nut gets cracked open at about 10AM, PST.  (That’s 1AM in Kuala Lumpur)
– 
I should be awake 4-6 hours later, say 4PM PST (That’s 7PM in Boca Raton)
– I will be spending 2 nights in the hospital, so I’ll probably be checking out on Saturday morning (that’s Sunday, in Hong Kong.)

IF YOU’D LIKE TO VISIT ME OR SAY HI OR SEND ME BASKETS OF PUPPIES DURING OR AFTER SURGERY:  I would absolutely love all of that.  I like making a party out of brain surgery.  But it will probably be difficult for me to communicate (especially during surgery), so my sister Jen is going to be the contact person starting Thursday.  If you don’t have her info but would like it, just give me a shout before Thursday and I’ll put you in touch.

WHERE:  Surgery will be at Cedars Sinai Medical Center, in Los Angeles.
You know, my favorite local brain surgery spot.

WHY:  Because I’ve got another little spot of brain cancer in my head, and the best way to get it out is to physically cut a hole in my skull and have a person remove it.

HOW:  How? I don’t know, I’m not a brain surgeon.  But I do know that the new tumor growth is pretty small, and it is in a  very safe and accessible spot (relatively speaking– this is the brain, of course, not my knee).  So we fully expect that the surgery will be quick and easy (again, relatively.  This is brain surgery.)  And we fully expect that I’ll wake up every bit the 65 year-old Romanian drag queen I am right now.  In other words, I’ll be fine.  Not just fine– SPECTACULAR!

And here’s the best part:  Aside from running to brain surgery and filming it, I will actually be doing A SECOND THING ON THURSDAY THAT NO HUMAN BEING HAS EVER DONE BEFORE!  But this one is just because I’m lucky, not because I am an attention-starved idiot and/or trying to cure cancer.   And here’s what it is: THE CLINICAL TRIAL!  I will definitely be getting the clinical trial.  But since this post is already getting long, I’m going to write about it separately.  Click here for more info on me getting a head cold, on purpose.

 

(If you read all this, thanks for your patience.  Even if I get hit by a bus on Thursday, feel free to say yes to making a movie that cures cancer.  And to writing a check to the Cancerful Foundation to help make it happen.  Don’t make me haunt you and ask for money from beyond the grave.)

 

What’s Cooler Than Having 3 Brain Surgeries?

QUESTION: What’s cooler than having three brain surgeries?

ANSWER: Having three brain surgeries, and not having brain cancer anymore.

Hmm– that’s not exactly what I have in mind.  (Pun very much intended.)

Let’s try again:

QUESTION: What’s cooler than having three brain surgeries?

ANSWER: Having FOUR brain surgeries!

There we go!  I’m gonna go with that one!

Why?  Because today I found out that I’ve got a reason to get my skull cracked open for a personal-best  (and Peacock family record) fourth time!  That’s right folks– BRAIN SURGERY NUMBER FOUR!

Nuthin' Beats It!

 

Mind you, I’m not just doing this to show off (well, at least not only to show off).  I’m doing it because, well, I need a haircut.  And I prefer to get my hair cut in Beverly Hills.  I’m fancy like that.

Actually, earlier today my mother (who happens to be out here visiting for a week) looked at me with a wry smile and a subtle level of consternation and said “So what are you going to do about that hair?”  She is right– my hair is kind of a mess at the moment– but when she said this, I laughed out loud and said “Mom… why don’t we wait and see if I have to have brain surgery first.”

Turns out… I do!  Need both of those things.  A haircut, and brain surgery.  Two birds, one stone.  Boom!

Joking aside (or at least mostly aside) here’s the gist:

– Had an MRI today.  Have felt really (really) good of late, so I didn’t expect anything unusual.  But “unusual” in the world of glioblastoma being a relative term, what I found out today is that my much ballyhooed Brain Chance is back!  Or, more back, as it were, since it’s clearly been hanging out for three years now, just popping up now and then to remind everyone (except for me, because I tend to be conscious of this fact) that I have brain cancer.  Well how d’ya like that!

– The new Mini Tumor Piece (MTP) has appeared since my last MRI, two months ago.  It’s about a centimeter or so in size, and is located in the same hole in my head where all of the action has taken place thus far.  This is a good thing, where it is.  As Doctor Who said (I’ll take the liberty of paraphrasing, since that isn’t how he spells his name either): “This is pretty much exactly what you’d hope for, if you were hoping for something like this to happen.”

– Any respectful brain surgeon (and I find most brain surgeons to be, among many other things, eminently respectful) would scold me for saying this, but the particular surgery required to remove this New Chancey Growth (NCG) is somewhat of a fastball down the middle.  Which is to say, “easy” to hit out of the park, if you’re a good brain surgeon and not using a baseball bat.  Why?? How?? Well, I’ve already got a nice hinged door in my skull right there for them to go in and take it out (Wild West style, with a gap at the bottom for stray dogs and tumbleweeds to roll through), and my surgeon is already quite familiar with this region in my right front temporal lobe, having had his magical porcelain fingers in there two times already in less than three years.

– So I’m not 100% sure I’m going to have brain surgery soon (I could, after all, get hit by a bus tomorrow, thereby beating brain cancer and rendering further treatments irrelevant to my ongoing going), but I’m totally probably gonna have brain surgery.  Relatively soon.  Which brings me to the next point:

– There’s a fancy new clinical trial that hasn’t even started yet that coincidentally (or not, since this could all be a sham, just a creative writing exercise on my part performed to cheat my sister out of a reasonably meager inheritance), I just might be able to get into.  And not only that… NOT ONLY THAT!  But, well, a couple of things:

– I could be Patient #1 in said clinical trial.  Which means, The First Guy Ever To Get This Fancy Ass New Treatment For a Henceforth Mostly Untreatable Disease. (TFGETGTFANTFAHMUD)  Well how do you like THAT!? **

**(I like it a lot.   I am almost incomprehesibly lucky to have this option, or even any of these options.  And this is one big reason why you’ll rarely hear me complaining about any of this stuff that fate has bestowed upon me and my noggin.  I have options (with an S!), and in the world of glioblastoma, options barely exist 20 years ago.  I am one Cancerfully lucky sunuvagun.)

– This particular clinical trial involves some shit that’s so rad and futuristic that it would knock your socks off if you weren’t already reading this post in bed while wearing flip flops.  (Why are you wearing flip flops in bed?)  So what is it, you ask, as you sheepishly remove your flip flops and put them on the side table?  What is this Bitchinly Futuristic New Trial (BFNT)?

– It’s giving my brain a cold.  Literally.  Now if you watched that 60 Minutes piece a few months back where they injected polio into some guy’s brain who has glioblastoma, you may be familiar with The Hot New Trend™ (THNT™) in cancer therapies, which is modifying viruses that usually do shitty things to people to instead do awesome things to people, by doing shitty things to their cancer instead of them.  That’s kind of what this is.  But I’ll explain a bit more:

– In this particular trial, the idea is to inject a modified COLD VIRUS (not as cool as polio, but a lot more down-home and cozy) directly into my brain piece, right smack in the area where the brain chance is chancing it up.  Unlike the polio virus treatment, which uses a modified virus to actually attack the cancer cells themselves, this jigged-up cold virus is instead designed to invoke your own immune response.  In other words, it puts some shit in your brain that makes your immune system say “Hey look, let’s get in there and take care of that shit!” and makes it fly in in full force to attack and remove anything and everything that isn’t Good Old Fashioned Useful Brains (GOFUBs).  Now I know, you’d think your immune system should already be saying this about the fucking brain cancer that’s in there, but this is where the science gets a little fuzzy and hey I’ve had a long day it’s not my job to write clinical trial abstracts, it’s just my job to have brain cancer and not die from it for a surprisingly long time.  And also write about all of this to make people (myself included) feel better about Cancer! in general.

– So to round up: I’ve got more brain cancer, and since the most obvious way to get brain cancer out of your head is to get in there and physically remove it, that’s exactly what we (myself and my magically Cancerful Team at Cedars) plan on doing.  Hence brain surgery #4.  And since the clinical-trial-injecting-cold-virus-into-your-brain thing requires that you already have an actual opening in your skull big enough to get a turkey baster through, a convenient time to do the injection would be during an already-in-progress brain surgery.  Hence Brain Surgery #4.

– Right now they working to figure out if we can actually make all of this happen at the same time, so I don’t know if or when it’s all exactly going to happen.  There’s lots of medical and scientific and bureaucratic finagling required to get the trial up and running, so we (and by “we” I mean not really me but mostly those aforementioned Cancer Magicians at Cedars) are currently figuring out if it’s possible to make it all happen quickly enough.  (In the world of glioblastoma, “quickly” is loosely defined as “with as much haste as you can possibly fucking muster, since this shit grows real fast.”)

– If we can’t get the trial stuff ready quickly enough, there’s a possibility that I’ll just drop by Cedars for a Run-Of-The-Mill Get-The-Cancer-Out Brain Surgery (ROTMGTCOBS) some time in the next two weeks, and then go back later when the trial is ready and have a fifth brain surgery shortly on the heels of the fourth, just to get that cold into my head, and maybe cure my cancer.

–  Wait, did I just say a FIFTH brain surgery?

– I did.

– What’s cooler than having four brain surgeries?

– Nothing.  Having four brain surgeries is cool enough, so let’s start there and see what happens.

– Brain Surgery #4 time & date is yet to be determined– I’ll keep you posted on here as soon I have more details.  (What a cliffhanger!)

– Speaking of cliffhangers, this Cancerful Movie and Cancerful Foundation I’ve been working very hard on are going really really well, and I have no intention of letting any of the myriad brain surgeries I have coming in the coming weeks slow me down even one bit.  Well maybe one bit, but not any more bits than that.  Preferably only a half a bit.

– Since I don’t want to appear overly cavalier about all of this (I’m only mostly cavalier, and that’s just because I’m an idiot) I will now admit that YES, this is all scary.  And yes, it’s hard.  It’s really hard, in fact.  But I end this day mostly and honestly relieved and excited and above all thankful that there are people and ideas out there that allow a person with a Super Terminal Whopper Of A Disease (STWOAD) not only to keep living, but to keep living well.  And the gratitude and utter amazement I feel for all of that keeps me going.  And keeps me wanting to keep on going.  Man, what a ride this is.

And it isn’t even close to being over.

Good night!  I will see you all in the morning.

Amazing.

Those of you who know me well know my distaste for the rampant overuse of the word “amazing.”

“Oh my god these fucking cupcakes are AMAZING!

Shut up, no they’re not.  Unless they were baked with strains of wheat re-engineered from samples of 20,000 year old pre-Mesopotamian DNA– then they might be amazing.  Or, if they magically appeared in your hands in a giant poof of glittery chocolatey smoke right at the instant you thought to yourself that you kinda wanted a cupcake– those cupcakes would be literally amazing.

Somebody asked me recently if a piece of pizza or something I had in my mouth was amazing, and I dickishly responded “Sorry, I have really high standards for ‘amazing.’  The Grand Canyon?  That’s amazing.  Still being alive after three years with brain cancer– THAT is amazing.  The pizza?  It’s delicious.  It’s not amazing.”

I actually said that.  What a dick.

So when I realized a few minutes ago that three years ago — exactly three years ago today — I was in Hong Kong and I had just survived brain surgery and I posted my first entry on this blog, I made note of this on Facebook (because Facebook was the one who’d reminded me.  [And this is the last kind thing you’ll hear me say about Facebook this year]).

And what was the first response I got?  The very first response, within seconds?

“Amazing.”

Amazing!

Amazing!

When I saw this comment appear, I actually laughed out loud.  I don’t know if Nick wrote this on purpose because he knows about my dickish Take-It-Easy-On-Amazing crusade, but either way, he’s right.  (He’s literally correct.)

Three years with brain cancer is amazing.

Three years!  With brain cancer!

Time really flies when you’re being alive.

Camp Cancerful

Last week I did something I never thought I’d do.  Wait, no– I did two things I never thought I’d do:

1) I went to Cancer Camp.

2) I went ice climbing.  At Cancer Camp.

That’s right: last week, I flew all the way to Ouray, Colorado, to go ice climbing for a week with a dozen other Cancerful people.  And all I got out of it was one of the most rewarding experiences of my life.

To be honest, as recently as two weeks ago, neither Ice Climbing nor Cancer Camp sounded like things I really wanted to do with my finite number of alive days.  But when I got a random call from an organization called First Descents, offering me “The Ice Climbing Adventure of a Cancerful Lifetime!” (for the record, that’s not really what they called it), I figured what the hell and said yes.  I packed up some warm clothes, checked my reservations at the airport (I mean the intellectual/emotional kind), and I went to Ice Climbin’ Cancer Camp.

Boy do I not regret that move.

I’d heard about First Descents last year, when I was researching organizations that support the Cancerful through activities like art and exercise– things that won’t cure you for good, but can definitely cure you for a couple of hours, or even a couple of days at a time.  If you’ve been reading this blog, you know that my own personal cancer is incurable, and (possibly as a result) I am really into the idea of curing a moment.  Or an hour.  Or a day.  Because then, you’re living.  You’re not dying.

Last week, at Cancer Camp, I was happy to discover that I got cured every day.  Pretty much all day, every day, in fact.

And I wasn’t the only one.  There were 11 other Cancerfuls just like me who laughed and cried and sang and climbed, and cured themselves and each other, one moment at a time.

And I love every damn one of them.

And here they are… Camp Cancerful!

Camp Cancerful!

Camp Cancerful!

Beside all those beautiful people you see there being adorable and sweet and hilarious and kind and supportive, one of the best things about them was that they had cancer.  Just like me.

Now they didn’t all have Super Awesome Incurable Brain Cancer like me (in fact only three of us were incurable– we called ourselves The Incurables, and we constantly lorded it over the Curables, because it was hilarious to do so and they thought so too), but they did have cancer.  And man was that awesome.

I never would have expected this, but even though I barely knew any of these people, from the first day it was SUCH. A. RELIEF. JUST. TO. BE. AROUND. THEM.

Because we didn’t feel awkward around each other.  We didn’t feel bad because we didn’t know what to say, or feel bad because we knew the other person didn’t know what to say.   We finally for once didn’t feel any of that awkward I-have-cancer-and-you-don’t shit.  We all had cancer, and so we didn’t have to give a shit about cancer.  Since we all had it, then all we were to each other was people.  People who had been through the exact same insane shit as we had.

Imagine that you’ve been living on the moon for three years, and no one else you know even knows what the moon looks like (except from afar), let alone knowing what it feels like to walk there and live there on a daily basis.  It sucks.  It’s hard.  It’s really, really exhausting, in fact.  On a daily basis.

But then, suddenly, you’re in a room with 12 other people who have moon badges just like you.  They know!  They know all of it.  And they look at you, and they just smile.

I’ve never felt more relieved in my life.  It was such a wonderful unexpected reprieve from one of the biggest Curses of the Cancerful (being alone with it) that at one point during dinner somebody just joyously shouted out “It’s just so fucking easy to be around you guys!!!” and everybody smiled and laughed and nodded and breathed a big fat collective sigh of relief.  Because we all really needed to be around each other.  And we were, and it was wonderful.

And then we went ice climbing.  And that was pretty cool too.

I’m minimizing the ice climbing part, but it was also fun.  And inspiring.  Especially when you see someone who has cancer in their bones and has been through the chemo ringer only a few months ago just slamming ice picks into a 50 foot vertical wall and climbing all the way to the top despite her paralyzing fear of heights and her weakened body telling her to stop at every moment.  And then watching her get up and go back and do it again the next day.  Watching that shit cures cancer.  And probably a lot of other things too.

dot climbing

I learned a lot at Cancer Camp.  And one of the things I learned is that other Cancerful people like to laugh about their predicament just as much as I do.  They’re relieved by it just as much as I am.  And they really want to see a movie (a musical!) about cancer just as much as I want to make one for them.

So I’m gonna do it.  I’m gonna do it for them because they accepted me and they laughed at my jokes and they made me laugh and they made me feel not alone and they even decided to name our group Camp Cancerful.

And that made me really happy.  Every one of those people made me really happy.

See?  Being Cancerful ain’t so bad!  Sometimes it’s actually totally fuckin’ awesome.

So thanks, Camp Cancerful.  I love all of you.  Let’s all keep on curing each other.

YAY CANCER!

yay cancer!

And finally, I have to also thank the wonderful, kind, efficient, professionally understanding and generous people who make First Descents happen.  They make it happen well.  They are curing the Cancerful on a daily basis, and it’s one of the most beautiful things I’ve ever seen.  If you think curing cancer is a good idea and you want to help them (or let them help you), go here.  Believe me, it’s worth it.

2015 So Far

2014 didn’t end so great.  I got the flu, and I almost pooped my pants.  At least I got to do both of those things with my family, where where I grew up, which is a real pretty place:

The Old Rushland Railroad

Also, despite my last post, I didn’t appreciate (or celebrate) my 39th birthday nearly as much as I’d have liked to.  This might have had something to do with the fact that, unlike my previous birthday, on this one and I didn’t randomly fly to Newfoundland to run a solo marathon in the snow.  And, having NOT done that this time, I realize now that the one bad thing about randomly flying to Newfoundland to run a solo marathon on your birthday is that You Will Never Do Something That Cool On Your Birthday Ever Again, So You Just Made Every Future Birthday A Tiny Bit Lamer, You Big Dummy.

See how hard it is getting older?

See how easy it is to complain?

Especially when you have the flu.  And brain cancer.  At the same time.

I was real depressed.  What a big sad cancerful fluevolent mess I was.  Influenza glioblastoma.

But then I got home, and I went for a drive and a hike and a swim in some hot springs and saw some real pretty mountains, and I managed to turn things around.  I managed to feel a lot better.  I wasn’t sure it would ever happen– I really didn’t know, because I felt really sad.  But it did–  it happened!  Suddenly, I felt a lot better!

And I still do.  I mean, look at those damn mountains!

IMG_0390

 

So then, feeling better, I drove home from those pretty mountains, because I had to get inside an MRI machine the very next day to find out if my time was or was not up. As I do every 60 days.

So I drove home, and I got inside that MRI machine, and when Dr. Hu came in to tell me the results, this is what he looked like:

IMG_0408

How could any bad news come out of that face?  The answer is: none can.

Dr. Hu and his Dr. Who mug had good news for me, and I’ve got good news for you if you like me having less cancer: The brains look good!

They look so good, in fact, that I didn’t even bother to look at the MRI images, for the very first time in all the MRIs I’ve had since all of this started.  Doc Hoo said there was nothing much to see.  So that’s good.  So then we move on!

Two More Months!  Worry Free!  And I don’t even have the flu anymore!  Let’s celebrate by asking the nurses if there’s any chocolate lying around that I can eat while they stick me in the armpit with experimental brain cancer vaccines!

Success!  And Chocolate!

Success! And Vaccines! And Chocolate!

And while I was sitting there eating chocolates and keeping my arm up in the air for the clinical trial-mandated 15 minutes (complain complain), my mom sent me a picture of me and my grandpop that she’d just found and she thought would make me happy:

Me and Pop Pop, circa 1993

Me and Pop Pop, circa 1993

It did make me happy.  I sure loved that guy a whole lot.  I still do, actually.  And he’s been dead for 20 years now.

See?  Being dead– big whoop!  You’re still awesome if you were awesome, even if you’re not alive anymore!

So that was my MRI day.  It was good day.  And I’ve felt pretty good since then.  To be honest, I’ve felt pretty good since the day before then, when I saw them mountains.  I mean, MRIs can be good, but mountains can be pretty spectacular.

So now I’m back in LA.  And the other day I’m driving by the mall, and a friend texts me and tells me she sees me there.  But I’m not at the mall, I say, I’m in the car by the mall!  This doesn’t make any sense, you crazy person!

But my crazy friend insists, and I’m hungry anyway, so I park the car and go into the mall, to see what the hell is going on.

Oh, there I am!

IMG_0435

You see, a couple months back, some folks at my hospital heard that I had jogged to my latest brain surgery, and they asked me if they could make an ad campaign out of it.  Since they save my life all the time, I felt obligated to say yes.

They also filmed some commercials, which you can see here:

http://cedars-sinai.edu/brain/  (Just click on my weird face and you’ll see a little story and a video.)

Or if you don’t like clicking, there’s a second commercial on YouTube,which I have conveniently e-situated here:

So that happened.  And I guess I’m kinda braincancerfully famous now.  And so is Dutch the Dog!

And so that was January, of 2015.

I am still alive, and feeling pretty Cancerful.  How are you?

You Will Always Have Been Here

I’m tired.

But this time, it isn’t from chemo.  Or radiation.  Or having my head opened up and fiddled around with for a third or fourth time.

This time, I’m tired because I’ve been working.  Hard.  Building something.  And this kind of tired feels good.

Building something feels good.  It feels good to make something; something that you can turn around and look at, and with deserved and uncomplicated satisfaction think to yourself:  “I did that.  And that is good.”

The thing you make can be as simple as a bouquet of flowers, or as complex as turning your friend’s garage into a guest house.  It could even be as high-falutinly aspirational as a feature film about cancer, or a not-for-profit charity Foundation dedicated to making that film, and helping people with cancer.

I actually worked on building all four of those things today.  And I completed two of them.

And that is why I am tired.  And that is why this kind of tired feels good.

I’m tempted to wonder why this “building things” impulse satisfies us… whether it’s just another one of our vain (and vain) attempts to disprove our own mortality– to make something / leave something behind that gives us permission to think “Yes, see, look at that!  I made that, and that is bigger than me!  That’ll last longer than I will!  Because I am afraid– I am oh so afraid — that I am not very big at all, that I might not last very long at all.”

I am also tempted to stop wondering about things like this.  And I suppose you are too.  And so I’d like to revisit something that I wrote about briefly… something that occurred to me when I was in the middle of an “oh my god I’m gonna die what the hell am I doing with myself I didn’t enjoy today enough did I enjoy today enough maybe if I stopped worrying right now I could be enjoying today more does any of this have any meaning anyway oh my god I’m gonna die what does all of this mean” kind of moment.

So I was thinking something like the run-on thought above, and then suddenly, some calmer, far more mature (and probably better dressed) version of me crept up to the plate, and he put his hand on my shoulder, and he said something to me.

And this is what he said:

“Dude.  Calm down.  You’re not always gonna be here.  But you will always have been here.”

And then I paused, and I thought about this.  I thought about something I had just said to myself.

“I will always have been here.”

“Yeah.  You will always have been here.”

“I will, always, have been here.”

“You will, always, have been.  Here.”

And then a wave of calm came over me.  Because I realized that there’s an indisputable truth to this thought.  And this truth carries with it an indisputable answer to The Biggest Fear There Is:  the fear of death.

You will die, but there is nothing impermanent about you.  Because you will always have been here.

The only question that’s really worth asking is this:

“How were you?”

bouquet

I’m happy to say that today, I was good.  Today I made a few things.  Some big, some small.  Either way, I will always have done that.

And that’s good enough, for today.
That, I suspect, is good enough for most days.

It might even be enough for all of them.

 

 


 

UPDATE!
(Since this blog was originally conceived as a means of Updation, here’s the latest, in brief):

• Brain surgery #3, 3 months ago.  Successful.
• 1st MRI after surgery showed some stuff.  Could be cancer, could be healing tissue.  Only way to know is wait and see.
• Started on new clinical trial (immunotherapy vaccine, similar to the last one.  Who knows if it’ll do anything, but having the option at all is very, very lucky).
• Latest MRI (2 weeks ago) showed same stuff as previous MRI.  Said stuff is not growing.  Which means it’s probably not cancer (if it was cancer, it would be growing).  This is good news.
• Feeling relatively good.  Working on things big and small.  Extremely grateful to be able to do either.
• Next MRI in 2 weeks.  We’ll see.  This is how it goes.
• It goes!  Hooray for that.  Above all, hooray for that.
• And I’ve got work to do!
• But I am tired.
• I’m gonna get some sleep, then get back to work.
• (In between those things, I think I’ll have a nice breakfast.)
• Good night!

Update: It’s Good!

Had an MRI this morning— the first one I’ve had since my 3rd(!) brain surgery, on June 24th. I like to try really hard not to worry too much or nervously anticipate these eight-week brain parole hearings, since they come at a relatively frequent clip, and will very likely go on for the rest of my life. I would rather spend the 59 days between MRIs working and writing and doing things I enjoy (like going down the shore with my family for a few days, which I just did, and enjoyed very, very much) rather than worrying about something that’s for the most part entirely out of my control. But this was the first one since that recent surgery, so I was “anticipating” this one… looking forward to seeing how well the tumor removal “took.”

Turns out it took pretty damn well. Doctor C.P. the Brain Surgeon (no relation, despite the identical initials) did a nice little number on me brains, and so in addition to feeling and looking relatively healthy at the moment, it appears that I am relatively healthy at the moment. So that’s good. That’s something to hang your hat on. For at least two more months, at least.

So to celebrate, I’m going to spare you my typical existential meanderings this time in favor of a regular old-fashioned medical update post, which is what this blog was supposed to be for in the first place, before my head started to get all (figuratively, artistically) swollen. So here goes:

• The MRI results looked good! Dr. Hu actually used the word “wonderful” to describe them. Which I found to be a bit highfalutin’, but hey it’s my brains he’s talking about, so I should take a “wonderful” and go home happy. Which is what I did.

• The area where the tumor had reappeared a few months ago looks nice and clean now, nothing more than a black hole (filled with cerebralspinal fluid, as opposed to infinitely dense matter).  This is all completely safe, in case you were wondering. All the useful brains are still there, just a little compressed and smooshed off to the side. They’ll be able to stretch back out into the hole if they want to, but there’s no harm if they decide to stay as-is.  Strange, but true.

• Here is a picture of the MRI scan itself. On the right you can see the image that was taken today, compared with the image (on the left) of my brain pre-surgery, back in June…
August 2014 MRI

 

• The angle of the two scans is a little different, but generally speaking what you’re looking for is the area in the center left side of the head.  On the left (June) MRI, you can see a little white nose-shaped blob.  That was Cancer!  And now, on the right, you just see a clean black hole in me brains where the Cancer! no longer is.

• So that’s great.  But keep in mind (as I must, both literally and figuratively) that the cancer was there the whole time– even during the last year when my scans were looking great– because it DID grow back.  So there was something there.  So there could still be some stuff there now.  Or maybe not.  There’s no way to know, other than the wait-and-see approach.  Which I’ve gotten good at.  The important point to focus on is this: “so far so good.”  And that’s very, very important.  That makes me happy.  That allows me to enjoy everything else around me that has nothing to do with cancer, which is a lot.

• As for TREATMENT, here’s the deal:  No more chemo, no more radiation.  For now at least.  No reason to mess with a good thing (other than cracking my skull open for a fourth time if it grows back again in the same relatively accessible place).   But this 3rd surgery did a nice little number on the re-growing tumor cells, and who knows, maybe they won’t grow back at all now.  Or maybe they will.  This is what I’m living with.  But I’m living.  Well.  That’s what matters.

• THE CLINICAL TRIAL:  The only treatment I am doing now, is another clinical trial.  This is called “Neurosphere,” (talk about high-falutin’), and is basically very similar to the clinical trail I did before.  It’s a vaccine therapy, intended to train my own immune system to recognize and destroy any remaining brain cancer cells.  This particular trial is brand new, and is being developed at my hospital (Cedars Sinai– a quick 4 mile jog from my house).   I am phenomenally lucky to be able to be a part of it.  Even if it does nothing.  It’s an option–  and options are in short supply when you have this type of brain cancer.  So hooray for the Neurosphere!  Oh and this trial is a Phase 1 trial, which means (among other things) that there are no placebos.  I’m definitely getting something.  And hopefully it does something.  Either way, it has no adverse side effects, so again…. lucky.  Lucky lucky lucky.  All I get is a few shots in the armpit (yes, they kinda suck) and boom, that’s it.  I get to (maybe) live longer.  Maybe a couple months.  Maybe years.  Who knows.  We’ll find out.

• HOW AM I FEELING?  I am feeling relatively well.  Quite Cancerful, thank you very much.  I’m mostly recovered from the surgery, and the chemo brain seems to still be steadily (if slowly) improving.  I am still slightly less than I was before all of this happened, but probably mostly in ways that only I notice.  My memory is soft, I lose my words more often than I’d like to, and I get randomly tired and have learned to pace myself and take naps.  All of this is frustrating for me at times, but I don’t have to remind myself that things could be much, much worse.  This much is obvious to me.  Hence me usually smiling when you see me.  (Unless it’s in the morning.  I still like being grumpy in the morning.  That hasn’t changed.)

IMG_0483

 

• GOING FORWARD: I will get a few more armpit shots, and I will continue with the bi-monthly MRI scans.  Things are calm for now.  Which is great, because I’ve got a lot of work to do.  Such as…

• I’ve been invited to speak at a Brain Tumor Conference at Cedars Sinai next weekend, which is exciting.  I’m not sure what I’m going to talk about yet, but I’ll almost definitely be cracking jokes of questionable taste, handing out Brain Cancer Cards, and trying to raise money to create a Cancer! Foundation, and to make this movie I wrote, both of which I believe very well might have the power to cure cancer.

The BRAIN CANCER CARD

• So that’s it!  For now.  Thanks to everyone for your continued support, here in LA and in PA and all over the damned place.  I’m lucky to have a lot of really nice people in my life, and even luckier to have learned to be a nicer person to (at least most of) them.

And thanks for reading.

See, having brain cancer ain’t all that bad.

Well how d’ya like that!

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, bear 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 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