A Sunday Homily

So much of what we build, so much of what we paint, so much of what we create, is in essence a reflection of our realization and deep desire to ignore that we are going to die.

We are probably the only species to have evolved to the point where we recognize our own mortality.  We are certainly the only species to build churches.

We see our own death coming, and we are unable to accept it.  For our unique ability as homo sapiens to recognize and process the world around us and our seemingly singular place within it, is utterly at odds with our absolute inability to understand why.

This all seems so magical… how can it just end?

This connection feels too beautiful, how can it just cease to exist?

And so we construct ornate palaces dedicated to our immortality.  We build them with marble, and rhyme, and brush strokes, and song.

We build them with the other spectacular gifts we as a species have been given– those higher powers which set us apart, the kinder cousins of that terrible ability we have to relentlessly know.

To know what is coming.

To know that everything that is now, will not be.

So look at that gleaming façade of pink and green marble– surely that will last forever.
Read those fragile words inscribed on a white page, whose incandescence somehow sets your mind aflame– therein lies magic.
Listen to that soaring chorus and its smiling refusal to do anything but livethat makes me cry, that makes me feel alive.

Better yet: make more of these things.

For the beautiful gifts which have fallen upon us– those higher powers to create and reflect and amplify life– may indeed outweigh that terrible talent which dogs us: the awareness of death, of that which we wish we were not aware.

There is nothing impermanent about impermanence.
There is nothing fleeting, about going away.

You will always have been here.

So make your mark, if you need to.  Regardless, you will already have done.

Sing your song, if it soothes you.  And do so especially if it gives others ease.

Build your church, in public or private, even if that church is as small as a smile.

And listen, always, for the hymns around you.

How we live and that we will die should not be of equal concern– for only the latter is unchangeable.

And you will always have been here.

The question is:

How were you?

 

 

 

 

 

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!

Inspiration

As much as you know you have to, it’s just hard having to convince yourself every single day to keep going, to keep doing this.

It’s just hard, and I’m just tired.  I’m tired of it sometimes.  Like right now.

And I’m quite sure I’m not the only one.

And I guess this is why we seek, and need, inspiration.

Because it’s hard.  It’s hard to keep your face and your feet pointed forward, unrelenting, despite the raging swirl of fear and uncertainty that licks at your heels, and perhaps undermines the entire path you think you are walking on.

This is why, I suppose, it’s important that we lift each other.

Since in those moments, when life is coming to us with ease, and with beauty (those moments do come; several of them came to me yesterday), we can create a reflection of that experience– that utterly bearable lightness of being that sails through our soul like a cool drink or a child’s laughter– to remind others who are struggling that it will not always be so.

This is what inspiration is.

It can take many forms: some as simple as a smile, some as elaborate as a song, or a painting, a movie, a joke, a heroic act, or an entire lifetime built from bricks like these.

Whatever form it takes, inspiration is a reminder — a missive sent back to Earth from the outpost of Ease — that things will not always be so.

You will laugh, again.  You will love, and be loved.  You will be moved by a song, brought to tears by a joke, deeply touched by an act.  You will be rendered speechless by something you see in nature that stretches credibility with its raging, searing, and utterly surprising beauty.

These things will come to you again.  Your burden will not always be so.  And rest, assured, it is shared by all of us.

So let us complain, together, to the world, to the wind, with a deep and honest sigh.

For it is hard.

But it is, also, beautiful.

And it will always be so, again.

 

 

(Here’s proof: after writing this, I just inspired myself, and was brought to tears, by something that someone did forty-five years ago.)

Well How Do You Like That?

There’s a story that I wrote before I became Cancerful, one that I’d been working on for a long time (I’ve continued to work on it while being Cancerful, and hope to one day work on it post-Cancerful).  It’s a story about our world, and about mankind’s place in it.  It’s not a short story.  It’s a long one, but a good one (and a scary one, and a funny one) that I’ve realized is pretty much nothing more than my attempt to process the insanity of what is happening to us, and around us, and because of us.  Climate change, cultural wars, species extinction (including, possibly, our own)– you know, those easy Sunday afternoon conversations.

The name of this story, which is about the end of the world, is this:
Well How D’ya You Like That?!

This has always been the name, and I’ve always known it is the right name.  But it wasn’t until just now that I thought about why this is the right name.  Why would I would give something so serious such a silly title?

The reason is this: the question is unanswerable.  And maybe the predicaments the story is about (climate change, cultural wars, species extinction, etc.) are unanswerable too.

Maybe some dilemmas are actually unsolvable.  And maybe that is our real dilemma.  And this is where I began to see the connection between that story–and that title– and having brain cancer.  And this is why I am writing this on this blog.

If some dilemmas/questions/problems are unsolvable (i.e., brain cancer), I find that the reaction I lean toward (or at least try to) is something akin to “Well how do you like that!”  Now, this isn’t a cop-out, or an attempt to laugh off or ignore with feigned ease things that are clearly and unarguably terrifying (climate change, cultural wars, species extinction, brain cancer…)

Rather, the feeling behind this beautiful (and beautifully funny) statement-question is essentially just marveling at the spectacle of life– at the impossibility, magnificence, horror, and beauty of the world– all at once.

Cancer:  Well How D’ya Like That!?

For if there is no answer to a problem–if there truly is no answer– then why not occupy ones-self with the beautiful unhinged perplexity of the problem itself?  Rather than A) turn away and ignore it, or B) invent solutions to it that you know not to be true.  (Even though these latter options are certainly attractive, and have their obvious benefits, it is not in my mind’s charge to wander down those paths.)

As much as I’d like to ignore, I can’t.
And as much as I’d like to believe, I can’t do that either.
Some people (many people) might find that tragic, but I would say to them:

The willing acceptance of unknowing (and, particularly, the unknowable) does not exclude you from truth.  (In fact it will, in many cases, lead you more quickly toward it.)

Neither does the recognition of horror– of the often unavoidable pain, and suffering, that the world churns out– lead one away from the ability to see, and feel, and bask in beauty.

And so, with my eyes wide open, I look at this world, at the hand I have been dealt, and I smile.

Because I can see.  I can smile.  I was dealt a hand.  (Two, in fact.)

I was given the gift of life!  And then I got Cancer!  And… well…

Well how do you like that?!

Isn’t that something?

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