Brain Chanceiversary 2: Another Rhapsody In Blue!

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

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

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

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

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

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

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

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

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

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

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

MOVIE TITLE

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

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

soul music

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

gershwin

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

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

And grateful that he came by to say Happy Brainchanceiversary.

Thanks George.

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

Death, Life, and Cancer Zombies

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It’s simple.

Because we’re afraid of death.

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

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

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

Life!  Now that’s something worth anthropomorphizing!

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

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

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

Hi!

I’m still alive!

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

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

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

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

Just not here.

But soon, here as well.  Hopefully.

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

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

RUNNING-pic

 

 

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

You’re Cancerful! (A Public Service Announcement from The Brain Chancery)

You’ve got cancer — congratulations!  I say that as a joke, but the actual funny thing is this:

Whenever I hear a friend mention lately that someone they know has cancer, the first thought that runs through my head (I’m not kidding now) is something like this:

“Hooray!”

I think this every time.  It’s a gut reaction, it just happens.  I get happy for a nanosecond.  Why?  I wondered that myself.  I think it’s because, for a nanosecond, it makes me feel like I’m not alone.

One of the hardest things about having cancer (and there are at least 3… 4… maybe 750 very hard things) is that it’s extremely isolating.  It makes you feel really, really fucking alone.  Or at least it made me feel that way.

Now, there are loads of different types of alone-ness, and (thanks to my wonderful cancerless friends and family) very often I’m with people I love, and I am happy, and I don’t feel alone at all.  But even in those times, I’m alone with having brain cancer.  And that’s hard.  Sometimes it’s even harder when you ARE around people you love.  Because try as they might (and oh do they try, and oh am I glad that they try!) they don’t– they simply just can’t (and that’s not their fault!)– know what it’s like.  And they don’t know what to say, and you don’t know what to say, and it’s impossible to completely ignore because it’s on your (cancerful) mind constantly so you just can’t ignore it as much as you (and they) might want to.  And it’s really lonely having to figure all of this out, and deal with it, and not completely freak out, all by yourself.

Even if I was lying in bed with the love of my life (unless it was Dutch) I would still be alone with my cancer.  (Unless the love of my life had cancer too, in which case that sounds like a doomed but pretty hilarious and secretly awesome kind of relationship.  Two lovers!  Dying of brain cancer at the same time!  There’s my next movie!  Now I’m totally kidding!)

I don’t say any of this to complain or beg for sympathy, nor do I say it to try to trump whatever burdens you cancerless (or cancerful!) readers might have.  I’m sure your burdens are heavy, difficult, and in some rare instances untrumpable.

I say all of this, instead, to tell people who might be reading this who feel alone with their cancer one important thing:

You are not alone.

In fact, if you do have cancer… smile, because I do too!  And it sucks!  It sucks!  Doesn’t it suck!?  What a pain in the ass!  I’m quite sure we can both agree on that.  And at least BOTH of us have it!  And we’re not the only ones!  (See, right there, for that nanosecond, neither one of us was alone with this.  Wasn’t that nice?)

Now, I’m not one for support groups, just as I’m not one for looking up medical advice/information on the Internet (clearly I’m also relatively alone in that regard).  And I’m sure support groups can be great, and very helpful, for a lot of people.

But for ALL of us Cancerful people…

(Did I just coin the word “Cancerful”?  Regardless, can we all start using it all the time pretty please because it’s awesome?  It’s not “I have cancer.”  It’s “I am Cancerful!  Are you?”  God I love that.)

Shit, where was I… (goddamn hole in my brain and proclivity for parantheticals)… oh I remember!

But for ALL of us Cancerful people…

WE, THE CANCERFUL, CAN’T LIVE IN A SUPPORT GROUP ALL DAY EVERY DAY.  (Even though we kind of need to.  Because we have cancer all day, every day.)

That’s why we need you: our friends, our family, our dogs, our other loved ones (mammalian and otherwise) to be our all day, every day support group.  We need your help with this.  We can’t do this all alone.  And we know that’s hard for you, but guess what?

IT’S HARDER FOR US.

(WARNING:  I’m aware I’m pulling the cancer card.  And I’m pulling it hard, because I’m not pulling it for myself.  {If I was pulling it for myself I’d pull the BRAIN CANCER card, which totally trumps all the other wimpy cancer cards out there. [Definitely, absolutely, 100% kidding on that one.  My cancer is really scary and really shitty but I've also been really, really lucky.  And the Pancreatic Cancer card is the ace of spades.] }  Anyway, I’m getting buried in parentheses, so here we go let’s get out of here…)  Whew!  Now where was I?

HAVING CANCER IS HARDER FOR THE CANCERFUL THAN IT IS FOR YOU.
That’s just true.  And I will tell you the #1 reason why it is true, right now:

Imagine yourself as the hub at the center of a wheel, with spokes shooting out in all directions.  Each one of these spokes represents one of the many relationships in your life:  each is the connection between you and the people you love, or like, or even just know.
Now look at this rudimentary drawing that my wonderfully talented (for a dog) dog Dutch the dog just whipped up for me…

The Wheel of Cancerful Relationships

The Wheel of Cancerful Relationships

In this drawing, “The Wheel of Cancerful Relationships”, let’s say that the color BLUE represents CANCER, and the color GREEN represents… not cancer.  Let’s also say (for the sake of argument) that while it’s not easy being GREEN, it’s even uneasier being BLUE.

Why?  Because when you’re Cancerful, 99.9% of your relationships, no matter how big or small, are suddenly and powerfully and inexorably defined and weighed down by a heavy, heavy burden: the blue burden of CANCER.  When you’re Cancerful, every time you talk to anybody you love, or even just know (like the guy at the sandwich shop) the first thing that they probably think about when they see you is… can you guess?  Bingo:  CANCER.

YOU, on the other hand, when you see any of those people, the first thing you WANT to think about is anything BUT cancer.  Because you’re already thinking about it ALL. OF. THE. GOD. DAMNED. TIME.  But now, every time you see somebody, either they don’t know what to say, or you don’t know what to say, or you feel bad that you know that they don’t know what to say and you don’t want to be a burden you just want to be a son or a friend or the guy buying a sandwich, but you can’t.  You have cancer.  You’re that guy now.  And it gets so tiring.  So very, very tiring.

But if you’re GREEN, you’re in luck!  Because you get to talk to people all the time who don’t have cancer.   And you don’t have cancer either, so look how many of your relationships are green!  Most of your lines have nothing to do with cancer!  Of course, a few of you greenies know somebody else who has cancer, but that’s only one other blue line.  You’ve still got all those easy green ones!

But for me, for us, for the Cancerful, we don’t know anybody who doesn’t know that we have cancer.  For the Cancerful, it’s all blue, all the time.

When you’re Cancerful, you never get a break from it.  Ever.  Except for 2 instances, which you might be able to spot in the diagram:

1) Your dog, who is both the love of your life and your best friend, and who doesn’t give a shit you have cancer because she doesn’t even know what that is.  That relationship is totally green.  No cancer in there at all.  And…

2) Uncle Joe, who also has cancer, and who is in the center of his own BLUE Wheel of Cancerful Relationships.  Uncle Joe knows EXACTLY what the fuck you’re going through, without even having to think about it.  And when you see him — the times I’ve seen him over the past 2 years — it’s been so nice, because it’s like I can finally sigh with relief that I’m not alone and that he gets it, 100%, and we can just stand there and have a beer and talk about baseball or (even better) joke about having cancer in a way that makes most people who don’t have cancer a little freaked out.
In other words, when I’m hanging out with Uncle Joe (or even just thinking about him), that pesky one way that I’m always alone just disappears.  And it feels really good.  And I’d like to thank my Uncle Joe for teaching me that.  And for having cancer at the same time as me.  He made me feel a lot less alone with it.  And I love him and I’m gonna miss him.

So for those of you who are mostly, if not all, in the GREEN, the reason I wanted to write this was to ask a favor of you (and I’m directing this mostly at people I don’t know, since those of you I do know I’ve probably already lectured enough about this and lots of other crap.  Thanks for putting up with me :)…

If you know someone who has cancer, remember first and foremost that while the line between you is now BLUE, and that makes it hard for you, it makes it hard for them too.  And they don’t have any green lines at all.  None.

So if there’s anything you can do to make ONE of their blue lines (the one that connects you) a little lighter, a little softer, a little happier, more supportive, caring, hilarious or most importantly a little STRONGER… please just do that!  Please!  Just do it!  Because all those blue lines are pulling really hard on your Cancerful friend, and it’s making them really tired.  They’re probably trying really hard to just stay alive, and if all those blue lines could suddenly become something that’s lifting them up, supporting them, and helping them to feel happy and safe and not alone and even more ALIVE while they are still alive… well… then you’re curing them a little bit, even though they still have cancer.

And that’s pretty much the best possible gift you could ever give them.

***

 

PS:  This one’s for Uncle Joe.  I just found out he passed away ten minutes ago, while I was writing this.  And his beautiful son and beautiful daughter, my brother Patrick and my sister Karen, have been by his side this whole time, lifting him and laughing with him and just being together with him, and helping him feel alive while he was still alive.  They’ve been curing him this whole time.

And that’s pretty much the best possible gift they could have ever given him.

Rest in peace, Uncle Joe.  I love you, and we’re all gonna miss you.

Uncle Joe

Incidentally…

The MRI on Tuesday looked good.  My brain looks clean.

A few days before that, on January 2nd, I finished the thing I’ve been desperately trying to finish in the event that I’ll soon be finished.  I’m extraordinarily proud of it.  There’s still a lot of work to be done, but I’m ready for it, excited about it, and so unbelievably thankful and aware of how lucky I am that I’ve managed to get this far.

And a few days before that, on December 28th, it was my birthday.   I turned 38.  To celebrate, I ran a marathon.  For the first time in my life.  In Newfoundland.  In the snow.  Mostly by myself, and mostly on the side of a highway.  It was pretty awesome.

Turns out writing can cure cancer.  And so can running.

More on all of this to come…

Trans Canada Highway east, somewhere around mile 10

Trans Canada Highway east, somewhere around mile 10

Cure Your Own Cancer! Write All About It!

It’s funny to think there was a moment when I wasn’t sure if I wanted to be writing about cancer.  It made me nervous.  I was already thinking about it too much, trying NOT to think about it so much.  I didn’t want it to occupy any more space in my brain than it already did.  Which was a lot.  (Pun and extended metaphor both intended and unavoidable.)

But I took a leap of faith and went for it.  And as it turned out, it was one of the best decisions I’ve made since I first got the cancer on/in the brain.  As it turns out, writing has not only helped me unpack my crowded brains of the too many things swirling around inside them; it’s also given me a venue through which I actually managed to cure myself.

Now don’t take that literally— I don’t mean to say that I’m permanently biologically cured of cancer.  Because I’m not, and probably never will be, unless by some sweet stroke of luck I die of a stroke 50 years from now and they  say “Well, it looks like he really was cured of that brain cancer after all!”

What I mean to say is that I literarily cured my cancer.  I wanted to see, to hear and imagine and feel what it would be like to be told that I was cured.  As in, the doctor closes a binder on his desk and says: “Go home.  There’s nothing else we can do for you here, because you’re fine.  You’ve got nothing at all to worry about any more.  Have a great weekend, and if I ever see you again it’ll be at that taco place you told me about in Redondo.  Their carnitas is fantastic.”

I wrote something like this (well, a slightly different version with less taco talk and a bit more suspense) about two weeks ago.  To try it on, to see how it felt.

It felt good.  So good, in fact, that the instant I pressed the “.” key, I started to weep like an old Italian lady.  I completely lost my shit, that’s how good it felt.  It felt so good that I was, in that instant, actually pretty much cured.

So when I went to the hospital for my MRI one early morning early this week, I felt an odd and totally new sense of anticipation swirling about me.  I love going to my hospital (all they ever do is things that make me not die), so I’m always excited to be there.  But this time I felt like I was going to a movie, or a show, that everyone was telling me would completely change my life.  Save my life, in fact.  I was excited.  It was weird.  Weirdly wonderful.

So while I sat in my underpants in the waiting room of the Mark Taper Imaging Center, I scribbled this in my notebook:

journal 1

journal 2

journal 3

journal 4

And it was.

And I am.

******************************
So that’s what art can do.  Thank god I stupidly chose to be an English major.

Incidentally, I made sure to mention all of this to my doctor, since he’s been kindly following the progress both of my brain and what it’s working on.  I told him how he totally blew a huge dramatic opportunity by not telling me that either I was cured, or was gonna die in like 3 minutes.

He laughed.  So did I.

Next time I go in there with a few pages of scripted dialogue that we both have rehearsed in advance.

******************************
PS:  If you’ve got the cancer, and you’re worried about it, try writing about it.
Write anything.
And if you don’t know where to start, try just writing the word “cancer” with an exclamation point after it as many times as it takes to make you laugh out loud at least once.
Cancer!  Cancer!  Cancer!  (for me, it only took 3 times)

Then write whatever else comes to mind.
Because there will be something.
And it’ll probably be good for you to let it out.

To miss, to miss nothing

I’d forgotten what it was like to miss someone, because I’d trained myself during the course of my first love (which was both very long, and very long-distance) to become numb to that emotion.  I either couldn’t handle that enduring and painful yearning, and blocked out my ability to feel it, or I just became so used to it that it no longer mattered in any context.  To miss someone or something became so normal for me that I completely forgot about it, even when that relationship ended.  It’s been years since I’ve deeply missed anything.

It wasn’t until recently, with all this pondering of life and death and living and leaving, that I can understand again what it would be like to really miss someone.

I can already see myself missing my father, whichever of us is the one to go first.  And not just at the age he is now, but at every age we ever were together.  I’ll miss all of those him’s, and all of those him and I’s together.  I can feel now what that will be like.

And it gives me happiness to know that this sensation, that missing, is built entirely on love.  It’s a longing born from beauty, and where it exists that beauty and the love upon which it was built still exists, and always will exist.  Not flickering, but strong, and forever.

And now I realize why I haven’t been missing anything this whole time.  Because I’ve been paying attention to it.  And it’s still there.  And it always will be.

ObamaCares Part 2: I’m Covered, and So Are You

Breathing any kind of sigh of relief has extra meaning for me these days, and this morning I got to let out a very important and very relieving sigh.

Thanks to the Afforable Care Act (and to my mom, who did the applications for me), I just got my new health insurance through the Covered California insurance exchange.

Not only was it a piece of cake to shop for and compare plans, but the plan I wound up getting is perfectly affordable. Like, unbelievably affordable. Having brain cancer and all, it would have been impossible for me to even shop for health insurance 2-3 years ago. I would have been laughed off the phone, then sent a “Good Luck!” postcard with somebody giving me the middle finger.

Because President Obama cares, however, I now have my very own fancy new health insurance plan through Blue Cross / Blue Shield. All my current doctors, hospitals and tests are covered, and so as of January 1st I will seamlessly transition from my old insurance (also supplied by the ACA) to this fancy new plan. Hooray for government and private enterprise working together!

So as I sigh this Great Sigh of Relief, I send a warm and sincere thank you to President Obama and everyone in Washington and Sacramento, who cared enough to make all of this happen. You’re all official Brain Guardians now.

It’s nice to feel protected by your country in a way that has nothing to do with guns. Which reminds me of something I wrote a year and a half ago (wow, have I stretched this chance out that long?), when the Supreme Court upheld the Affordable Care Act…

“To hell with cynicism about government, about politics, about the left or the right or the top or the bottom.  To hell with cynicism forever.  Brain cancer to cynicism!  If we don’t believe we can do anything good, if all we focus on is the fact that we’re arguing and divided and that it’s all gone to shit and we’ll never be able to fix it, then what good is going to come of us?”

This morning, I find myself feeling extremely uncynical.

And it feels really good.

 

Minimize My Morbidity!

The 4th Quadrennial meeting of the World Federation of Neuro-Oncology is being held in SanFrancisco at this very moment.

Where's the brain?

Where’s the brain?

(They should have hired me to do their logo.  How there is no giant glowing brain on the far side of the bridge makes absolutely no fucking sense.)

At this very moment, I am missing “The Sunrise Sessions” (wasn’t that a lost Fleetwood Mac album?) which include the following lectures:

Sunrise Session 1: Maximal Safe Resection of Glioma – Current Techniques

- Maximizing Extent of Resection for Gliomas while Minimizing Morbidity, Mitchel Berger
- Current Concepts in the Resection of Glioblastomas: Why Do We Do It and How Do We Do It?, Walter Stummer

Minimizing Morbidity?  
Why Do We Do It and How Do We Do It!?

I’m not making this shit up folks, THIS is how hilarious the world of brain tumors is.
(Or am I the only one who finds it this funny?)

I ‘ll tell you WHY you do it– so I don’t die!
I won’t tell you how you do it though– that part I still suspect is at least 45% magical.

I’m not sure there’s a conference in the world I’d rather be at (and would be more enthralled by) than the WFNO Sunrise Sessions.  When you get cancer in your brain, you tend to become a bit of a nerd about it.  Why aren’t they live streaming this shit, like they do all the stupid Apple product announcements?  As a brain cancer sufferer (owner? host unit?) we should all get a direct feed into our head of the goings on at this conference.

If anybody is reading this and is there at the conference with an iPhone 5S, I would happily accept a FaceTime live stream of this particular Sunday Sunrise Session:

Sunrise Session 2: Minimizing Side Effects From Radiation

- Cocaine, Codeine and Caffeine: Isn’t It Time To Just Wake Them The Fuck Up?  Charlie Breda
- Can We Modify the Risk of Cognitive Impairment, or Should We Just Tell Them How Stupid They’re Gonna Get?  Prakesh Jai’alai
- Is It Fair to Characterize Brain Beams As Life-Saving Double Rainbows? Jerome McDougle

OK it’s possible that I made those ones up.  But I can’t be blamed, after all– I have a hole in my brain.  Who knows what those phantom neurons are up to anymore–  I certainly can’t be held responsible.

And by the way–  If I’m still around in 4 years, will somebody please inform me that this conference is happening BEFORE it actually starts happening?   I should have a really cracking brain cancer standup routine by then, and would be more than happy to deliver it as the opening Keynote.

My Routine Inspection

Another day, another cliffhanger.

But let’s put this particular one to a quick end (because god knows we want to prolong the Big One as long as possible):

The results of My Routine braInspection this week were…

GOOD!

It's good! Chad 38, Brain Cancer 1.6

Chad 38, Brain Chance 1.6

NFL SuperRef Ed Hochuli was unfortunately not there to weigh in on the results, but Doctor Who was, and he was enthusiastic (although his biceps are not quite as impressive as Hochuli’s).

The short of it is this:  things have looked stable in there, and if anything the signs of tumor have been regressive.  (As opposed to progressive, which in the case of slots is good, but in the case of brain cancer is very, very bad.)

The long of it is:  you can never remove every last cancer cell through surgery (even two surgeries), which is why you hit yourself in the face (and inside the face) with all that chemo and radiation and chemo again.  In my case, as I went through all of that treatment there was a bit of stuff appearing on the scans that looked like it could be cancer.  But it could also have been healthy healing tissue.  No way to know unless you have brain surgery #3, or you wait and see what happens with it.  If it grows, it’s bad.  If it doesn’t, it’s good.

I chose to wait and see.  And as we went from each 2 month MRI to the next, the ghost in my brain continued to shrink in size.  Which is good.  Which means it was probably just inflamed healing tissue the whole time.  Not cancer.  Or not a lot of cancer, at least.  Which is good.

If this all sounds familiar to you, good– that means your brain is working.  Even better, as I was typing it it started to sound familiar even to me, and so I went back to see if I’d already explained the above already.  Turns out I had, in September.

I mention this to point out (to you and myself) that my memory seems to be working a little better again.  And my brain, in general.  I’m a little clearer, a little less forgetful.  Which is great.  Really, really great.

This isn’t to say I’m going to stop using the “I have a hole in my brain” excuse– because I am definitely not going to stop using that excuse.  I still have a hole in my brain, and I still am some kind of a shadow of my former self (which is very luckily starting to resemble my former self.  Just a better version of him.)  I still forget who I had dinner with last night sometimes, and the entire  last 2 years seems like it all happened in one day, 89 years ago.

And please don’t be the 9,457th person to tell me “Oh that’s normal, my memory is getting shitty too, we’re all getting old, Chad!”  Because if you are  the 9,457th person to tell me that, then you are going to have to trade me your totally non-cancerous brain for my totally-cancerous one.  Deal?  Deal.

Which brings me to another point (that I’m also sure I’ve mentioned before, if only because I trust that I’m getting repetitive):  There are all sorts of things that people say to you when you have brain cancer that don’t always ring the way they want them to.  These things are usually said with the best of intentions (or at a minimum slightly above average intentions), but when you’re the guy or gal with the cancer in your brain they sometimes sound funny.  Or weird.

One such example that many of you have already heard me go on about:

“Good luck with your MRI!”

If you’ve said this to me, thank you.  This means you are a nice person (or at least nice-ish).

Since I am very possibly not as nice a person as you, this particular phrase always gives me the creeps.  I’ll tell you why.

Wishing somebody good luck on an MRI is like wishing them good luck opening a birthday present.  Whatever’s in there is already in there– they just don’t know if they’re gonna like it yet.

I’m not saying this to be a smartass (even though I definitely am a smartass).  The point is only that the test itself is meaningless.  Time spent worrying about it is time wasted.  And if you’re the kind of person who is having MRI’s every 2 months, time is probably a pretty valuable commodity to you.  Fretting isn’t your best use use of it.

I’m again getting the sneaking suspicion that I’ve already written about all of this, but maybe that’s because I’ve talked to a few of you about it already.  Or maybe I have written about it before.  I have absolutely no idea– I don’t remember a damn thing that’s on this blog besides that Lincoln thing and the fact that I wrote “glioblastoma  in rainbow letters.

If I have already written about this, somebody please be a smartass and tell me where and when?

Anyway, to continue on the repetitive cliff hanger streak… next MRI in 2 months!  At that point it’ll be 2014, and I’ll be 38.  Unless I get hit by a bus.

Ooo!  Yeah!  One more thing!  Please don’t be the 945,768th person to tell anybody with any kind of cancer that “we could all get hit by a bus tomorrow”.   Cuz trust me, that kind of philosophizing about death when you’re not actually so deeply and profoundly faced with it is not going to help them.  It’s like a rookie telling Satchel Paige to “walk the guys with the big biceps.”  Well intentioned, but… you’re only really saying it to yourself.  So say it to yourself.

See what a pain in the ass I am?

I blame my mother.

;)

Pressing the “PUBLISH” button and waiting for the phone to ring…

PS:  Mom don’t worry, God punished me for writing that last line: I forgot about the soup I was reheating while I was writing this post, and I totally burned it.  (I can hear your voice right now saying “See? He did!”)

PPS:  Yes, it’s the same chicken noodle soup I made with that roast chicken you and Linda picked up for me that I complained was too small.  See what an ungrateful pain in the ass I am?

PPPS:  Now that I’m eating the soup, it actually tastes better than it did before… reduced, a little more flavorful.
See how funny life can be?  Burnt soup, even better than the original.  Go figure.