This Too Shall Pass (But when?)

I keep telling myself that this too shall pass…

But what will it pass on to?
And when?

Too often with the cancer you wind up trading one pain in the ass for another.  Sometimes you don’t even trade– you’ll often end up with two (or a half-dozen) pains in the ass at once.  How Cancerful is that!  It’s a real pain in the ass, to be honest.

I’m speaking figuratively, of course: the pains, while frequent and widespread (motley and multifarious, if you’ll allow the saurus), are typically  located in areas other than the derriere.  Like the head, for example.  I’ve had a lot of pains in the head.  But there have also been pains in the neck, and the knees, and the gut…  and now that I think about it, the derriere area has seen its own share of Cancerful controversy over the last few years too.  So sometimes the pain in the ass really is a pain in the ass.

Point is, there’s a lot of pains, wherever they may be located.  In the ass, or elsewhere.
For the sake of clarity, let’s just call them “a pain in the me,”  and get back to what we were originally talking about before this long pain-in-the-ass digression.  OK?  OK. Here we go:

I keep telling myself that this too shall pass…

But what will it pass on to?
And when?

Too often with the cancer you wind up trading one pain-in-the-me for another.  Sometimes you don’t even trade: you’ll often end up with two (or a half-dozen) pains-in the-me at once.  What a pain in the me!

To confuse matters, these Cancerful pains aren’t always painful  in the physical sense.  They can be intellectual or emotional pains.  Or, they can be physical things in your body that don’t actually hurt, but are so annoying and inconvenient that they still totally qualify as a HUGE pain-in-the-me.  (Which because I like acronyms and in the interest of brevity I will now call PITMs.)

This morning, i’ve got a few PITMs going.  One of them is in my gut, and this despite the fact (and not because of the fact) that I just had cake for breakfast.
Hey don’t judge–the last time I had cake for breakfast was after I had brain surgery (I earned it!)   And that was like a month ago, anyway.  This time, it was just because I happened to bake a cake last night before I went to bed, and what the hell else was I going to do when I got up this morning and saw a chocolate cake sitting there– eat cereal?  What am I, a fucking moron?

Anyway, my tummy hurts.  This has been going on for awhile.  And I swear it’s not because of my dietary habits; it’s a side-effect of a side-effect of all the cancer-fighting I’ve been doing.  All this surviving  has left with me with a pretty messed up gut, and that–my gut–was one of the things in my pre-Cancerful years that I never had a problem with.  In terms of size, or functionality.  My gut always worked real good.

Now, it’s a problem.  It’s one more pain-in-the-me,  in addition to all the other PITMs I still have, or will soon get.  For example, the tiny fracture in my back that I didn’t even know about (because I can’t feel it), which was apparently caused by medications, and not by anything fun like wrestling or climbing or trampoline-jumping.  Medicine fractured my back!  What a pain in the me!

But this is what happens.  You stay in this Cancerful fight long enough and you wind up with a lot of battle scars.  They come at you from all directions, and every single one of them is a pain-in-the-me.  The irony of surviving is that you get beat down.  It’s a war of attrition.  And the collective weight of all these scars eventually starts to feel like it might be heavy enough alone to bring you down, even though you’re still standing, despite the cancer.  (Or sitting, as I currently am.)

So when I told myself this morning that this one particular PITM I’ve been having trouble with– my newly surgically damaged vision — would eventually get better, I laughed.  At myself.  (Which is normal, when you’re having a conversation with yourself.)  I laughed, because…  well then what?

Because, when you’re Cancerful, the PITMs seem to just keep coming.  They come from every direction, and sometimes when you least expect it (much like the Spanish Inquisition.)  Surprisingly, some PITMs suck worse than the cancer that brought them on in the first place (which makes them part of the cancer, I guess?).  And they just keep piling up,  building on each other in one big Cancerful mess, until…

Until…

Hold on.  I gotta take a break.

[10 MINUTE PAUSE.   MAYBE 15.]

 

OK, I’m back.

As you might be able to tell, I”m having a really hard time writing this post.  Sometimes it’s easy, but sometimes it’s not.  This time, it’s not.

You see, this time, it’s actually difficult for me to see what I’m doing.  And I mean that literally:  I’ve had to keep my right eye closed the entire time I’ve been writing this.  With this new vision PITM I’m dealing with, for some reason that somehow makes it easier to focus on a computer screen.  But it’s still hard to focus.  And that’s not even mentioning the difficulties I have getting my brain to focus.

So there’s that, and the gut thing, and…. and even though I had cake for breakfast and I’m sitting in a comfy chair and a there’s a nice breeze blowing through the air… I’ve noticed several times in the last three hours (three hours!) that I’ve had to tell myself to keep going.  To just  finish writing this.

I’m telling myself that right now, in fact.  And I’m not even sure why.  I’m not even sure where I’m going with this.

I started writing this post because an idea popped into my head that I felt like I wanted to write about.  And I like writing.  So I started writing… but now it just feels like I’m complaining.  And I don’t like complaining.

I don’t want to complain anymore.  Ideally, I’d love to not have a reason (or many reasons) to complain anymore… but I know that that’s not going to happen.  I can’t just snap my fingers and make all these PITMs go away.  This is what I’m dealing with right now, and I have to deal with it.  This is where I am, right now, and it’s up to me what to do with it.

So what will the next paragraph entail?

I just smiled, when I wrote that.  I smiled, because it made me realize that right now, while this does suck, while all of these stacked up PITM’s are indeed a real pain in the ass, it is still up to me what to do with it.

I am lucky enough that it still IS up to me.

And that, my Cancerful friends, is bigger than a pain in the gut, or the butt, or the head OR the ass.  And sometimes it’s bigger than all of those combined.

So right now (Write! Now!) I’m going to finish writing this post, to cheer myself up.  I’m going to take this complaint about pains in the ass, and turn it into an encouraging, inspirational (and not painful) kick in the ass.

Because that’s all I got right now.  And you know what?  That’s good enough.  Because it was enough to make me smile again.  Just now.  And that’s a good place to start.

I think it might also be a good place to end.  Because even with only one eye open, it looks to me like I’m about to finish this post.  And I’m happy that I did.  Which means that I’m happy.   I just cheered myself up!  Which means that:

This, too, DID pass!

But what will it pass on to?

Maybe that’s up to me.

THE END.  (?)

I’m Sick. (and I kinda like it.)

So I think I’m sick.  But I’m kind of digging it.  Which, if you’ve seen me squeezing all sorts of fun out of having cancer, may not surprise you.  But this time, it’s a little different.

Allow me explain…

The last couple of days, I’ve had a few new things going on (in addition to the litany of old things going on, [where by “things” I mean symptoms and side effects and, well, just general sick-ness.])

For example: yesterday, I was tired.  All day.  Like, weirdly tired.  But I’m weirdly tired all the time, so for me “weirdly tired” means really weird.  Like, supernaturally tired.  The kind of tired that you’d imagine only comes once a millenium, and requires A Thousand Years’ Sleep to cure.

So last night, I did all I could think to do with one night (not yet being sure I’ll have the luxury of 364,999 more), and I made sure to get a Big Damn Solid Dose of Good Night’s Sleep (a B.D.S.D.O.G.N.S.).  Which worked quite well (I clearly needed it, and the lovely new curtains my mom helped me put up worked like a charm in the morning).

But today… same thing!  Super tired.  Hmmm.  What the devil!  And no new meds, nothing unusual going on in the brain lately that would explain this Sudden Swing to the Super Slumberous.  Why the hell was / am I so pooped?

Speaking of poop (it’s relevant, so I’m going to), I think yesterday I made seven trips to the toilet.  Actually I don’t think, I know.  I counted.   Seven sit downs!  And another four just this morning– which would have actually been five if I had actually made it to the toilet in time for #2 #5.  (I didn’t.  Make it in time.  More on this later.  Consider yourself warned.)

So anyway, all this new shit was odd.  Both the sleepiness, and the shittiness.  I hadn’t eaten anything odd either.  So what the hell is/was going on?

Then this afternoon, it occurred to me…

Maybe I’m just SICK!

On top of everything else, maybe I’ve also got a Regular Person Illness (R.P.I.)… like some kind of flu, or maybe even a run-of-the-mill-non-genetically-engineered virus!  These things seem to be going around at the moment, and a bunch of people I know (including my doctor) have been laid low recently.  So maybe I’m sick!

And for some reason, this thought made me happy.  Which did seem vaguely twisted, even to me.  So I’ve been thinking about that, and here’s what I realized.

A few things, actually…

– It’s kinda nice, just as a change of pace, to have something wrong with me that has absolutely nothing to do with brain cancer.  I mean, it sucks — it still feels like being sick — but it’s not any worse than what I am already dealing with (which I’m learning to deal with a bit better, and more patiently, on a daily basis).

Plus– and this is the important part…

– With this kind of sickness– this kind of Old Fashioned People Gettin’ Sick sickness– all you have to do is get some rest, take it easy, and it’ll just… go away.

Holy shit.  It’ll just go away!?!?!

What a fuckin’ luxury!

No brain surgeries?  No experimental drugs injected into your skull… no weeks and months and (if you’re lucky) years of heavy dose chemotherapy…  no direct-brain radiation, no support groups, not even so much as one trip to the emergency room!

Just chicken soup and sleep and passing time with books and movies and it’ll just… go away!?!

Wow.

So I guess that’s why I like being this kind of sick.  I wish they were all like this!

The only real negative effects of this particular R.P.I. (so far at least) have been:
a) a totally sleepy wasted day yesterday, and
b) the aforementioned #2 #5 that wound up in my pants instead of where I would have preferred it to wind up (or down, as it were).

But even that little mishap lead me to take that really nice long shower I’d been putting off for a couple of days. (Look, when you’re as tired as I’ve been, even the thought of getting wet is exhausting, because it means having to get dry again.  So don’t judge).  And it was a really nice shower.  I washed my (lack of) hair and everything.  It felt great.  I should do that every day!  (Shower, not shit my pants.  And actually, we’re in a drought, so maybe I can still only shower every other day 😉 )

Anyway, where was I… oh yeah, so even this Unexpected Shitting of The Pants lead to an unexpectedly nice outcome.  Maybe I really do like being sick!

I mean, I don’t want to be sick forever or anything, but therein lies the beauty… I think if I just wait it out, this particular bug is just gonna fly the coop!

I might even miss it.

Well not really, but we did have some good times together.

I’m gonna go eat some soup and wait it out.


PS: If you suspect I am either forcing cheerfulness or just pathologically required to find positives in negatives, you and I are in perfect agreement.  I don’t know what’s up with that either.  And I offer my sincerest apologies to anyone who feels like shit right now because of the flu, or cancer, or having shat your pants, or whatever might ail you.

I’m not pretending it doesn’t suck to be sick, because it does.

But if it can go away (even if just for a moment), well now that’s something worth being cheerful about, isn’t it?

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!

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.

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