Things You Can Still Do

Weird morning.  A lot of death in the air.  And coming from someone whose every day reality is spent wading ankles-deep in mortality (or brain-deep, if you prefer) death being weird is itself kind of weird.

So it got me thinking.  Which it does for all of us, I suppose. Thinking about death is the most difficult and peculiar train of thinking there is, since it feels so desperately important to figure out, and yet it rarely ever allows for any sort of acceptable conclusions, minor or major.

It’s difficult.  Even just thinking about death is difficult.  And that’s saying nothing of actually dying…  (See what I mean?  isn’t that difficult to think about?)

Anyway, what I’m getting at is is this: yes, it’s difficult– it’s really fucking hard, in fact.  It’s hard to understand, it’s hard to accept, and it’s especially hard to live with.

But that’s alright.  Some things are just hard.

The least we can do to ease our myriad burdens (this one in particular) is to avoid beating ourselves up for our inability to comprehend the incomprehensible, to accept the unacceptable.  Better to nod our heads in sad recognition of the fact that we just do not and maybe will never understand certain things.  Like this one particular thing.  And hey– that’s OK!  Because it’s hard! It’s really hard!

Of the many lessons I’ve learned in four years spent brain-deep in The Most Peculiar Of All Subjects, this is one of my favorites: That some things are just hard.  And that’s OK.  It’s OK to not know what to say sometimes, or even to think.
And one of the best things you can to do to make things a little easier is to accept the fact that it’s not always going to be easy.  We’re not always going to be able to figure it out.

But that’s OK.

Sure, it sucks.  Yes, it hurts.  Some times we find ourselves standing in front of a wall that seems so impassable and incomprehensible that we want to just bang our heads against it and scream.  And make ourselves hurt even more, out of frustration that we can’t just magically make it disappear.
But then, if wait long enough, something will change.  Something will come, as easily and lightly as this morning breeze, and we’ll open our eyes, and rub our heads and look up:  and that wall will be gone.  Or at least half as tall as it was.

And we’ll smile, and  we’ll go on.

So that’s what I’ve been thinking about this morning.

And it reminded me of one of the other lessons I’ve learned about death, in my last couple of years wading through it.  Here it is:

There aren’t many things you can still do, after you’re dead.  But one thing you can still do is this:

You can still make people smile.

And that’s really something, isn’t it?

This morning, someone who is no longer here, and about which I am terribly sad, still managed to make me smile.  Just thinking about her… I cried, but then suddenly I smiled.

And as difficult as all of this is, that one little part didn’t feel difficult at all.  That smile came easily, and honestly, and it felt true.  It felt like a gift.  And that gift is as real as the sadness, because here I am smiling again, right now.  Because of her.

She just did that.  Even though she’s gone.

Now that really is something.

Thanks.

Being Used to Being Sick

You know what’s one odd aspect of Being Cancerful (among the many, and they’re usually odd) that I hadn’t paused to notice before but for some reason suddenly just did?  It’s this:

Being used to being sick.

When you’re Cancerful, sickness comes so frequently, and in so many forms, that it becomes a part of life as normal as eating or breathing or using the toilet.  And so, like any normal part of life,  you start to get used to it.  Even if there’s nothing normal about it at all.  Even if it’s super weird.  (Then again, many of the things we consider a “normal part of life” would be super weird if you’d never done them before– I mean, how strange would it be to open a hole in your face, and then stuff a bunch of heated up plants and animals into it?  And then, hours later, to squeeze those same plants and animals out of another hole on the other side of your body, after having somehow absorbed many of their key ingredients and turned the leftovers into something stinky, so that you can keep living?  That sounds really weird, doesn’t it?  But it’s not weird at all, after  you’ve done it a couple of times.)

Similarly, when being sick becomes a regular part of life, you get used to it.  You get used to barfing.  (You get very used to barfing.).  You get used to aching.  You get used to passing out (both involuntarily and by choice).  You get used to eating pills (SO many pills!).  You even get used to feeling as shitty as you’ve ever felt from any fever or cold or virus you’ve ever had in your life,  but now on a daily basis.

You get used to being sick.

And just as often as not, this “being sick” is not even from the cancer, but instead from the things that you’re choosing to do to survive the cancer.  Like chemotherapy.  Or having a genetically modified cold virus injected into your brain.  I’ve chosen to do both of those things– and they both made me sick.

So how d’ya like this:  When you’re Cancerful, you choose to be sick, in order to not be sick.

That seems like it doesn’t make any sense at all.

But for some reason, it does.

And even if it doesn’t, you get used to it.

Like I said, you get used to a lot of really weird shit when you’re playing this Cancerful game.  (Heck, you even get used to the idea of dying.  How about that!)

But I guess getting used to things is the same as learning to live with them.  Which isn’t quite as good as “enjoying” them, but it’s a start.  It’s living, after all.

So I guess I’m OK with being used to being sick.

 

PS:  I’m now three weeks out from Brain Surgery #5, and doing well.  Having an actual real summer this summer (in contrast to last year, when after Brain Surgery #4 I had a Total Lack of A Summer).

So that’s good.  Great, in fact.

Do I feel sick today?  Well of course I do, I’m Cancerful!

But I’m used to it.post 5 head

Five Alive

Guess Who’s Eating Cake For Breakfast?

THIS GUY, that’s who!

Number 5! A Success!

 

So yeah, it was a bit of a bumer missing breakfast the other day, but since then I have not only had my FIFTH SUCCESSFUL BRAIN SURGERY —  I’ve also eaten CAKE for breakfast every single day since then.

So it seems  fair to say this has been a pretty successful week, when all is said and done.  Right?

Here’s a recap:

• TUESDAY morning: Brain Surgery  for breakfast.
(Extremely graphic [picture fothcoming, I hope.)
I have asked for a photograph of the inside of my brains every time I’ve had brain surgery,, but still have not gotten one.  This is in fact the only complaint I have about my neurosurgery team.  (Which is definitely a good thing
 )
I did, however, get a picture of myself cooling my brain off with an icy Shasta Ginger Ale immediately post-op– this was the closest I got to eating something all day (And it was delicious):

Shasta!

Shasta never tasted so sweet…

 

• WEDNESDAY morning:  Red velvet cake for breakfast!

I can eat cake!  (And talk!  And walk! And see!  And remember things!)

Delicious, AND easy to chew!

Delicious, AND easy to chew!

Most importantly, I can eat cake.   And I can do it so well, I figured I’d do it again the next day…

Thursday Morning: : Chocolate Marshmallow Peanut Butter Cup cake for breakfast!
For those of yous who come from where I come from, what we have here is basically a super fancy Tastykake Kandy Kake.  I’m not gonna say it’s better than the original, but it’s  kinda even better than the original.

KandyBrainKake!

KandyBrainKake!

 

So there you have it!  Fifth Successful brain surgery earns you two things:

  1. Cake for breakfast!
  2. 2 Less cancer in your brain!

Speaking of which, the surgery itself was extremely successful– I did wake up with a brish accent, but I don’t mind that so much.  Better than when I woke up speaking Cantonese, in Hong Kong.

They were able to remove about 90% of the tumor cells that were in there– digging any deeper ould have potentially removed my ability to eat cake (at least) so they left a little bit of stuff left in there, to be safe.  But   But there’s always been a little stuffleft in there.  For four years now.   So I’m OK with that.

Because I can eat cake!

I will be doing some followup treatment after this to deal with the remaining tumor (and ccake) in my brain, but it shouldn’t be too big of a deal.  And hey, I’ve always got brain surgery #6 to look forward to!

But before then, I think I’m gonna go down the shore, and eat some real breakfast: scrapple & eggs.  Cake for breakfast is good and everything, but it’s a little sweet.

Cheers!

 

PS: All this talk (and photography) of heavy sugar consumption brings something to mind:  when you get cancer, everybody and their mother tells you to avoid sugar, because “cancer eats sugar!” “and blah blah blah blah (they also tell you to smoke lots of weed & put tumeric in your coffee, so take it all with grain of salt.  Or sugar, as it were.)  But what I have actually learned to be the truth of the matter, is that while cancer cells do eat a lot of blood sugar, the only way you’d actually be able to affect them in this way would be to completely & utterly stop eating anything that contains any kind of sugar or carbohydrates, completely.  So no fruit, bread, no vegetables, etc.  Which isn’t the best idea.
In the very least, heavy sugar consumption isn’t good for anybody (Cancerful or not).  But even if you are Cancerful, don’t be afraid of eating a piece of chocolate here and there, especially if you believe that chocolate is important for your survival (as I do).

It’s not going to kill you.  Literally.

So that’s it for now!  I’m going to finish my cake for breakfast, have a little piece of chocolate, and then I’ll be home-weet-home later this afternoon!

Thanks to everybody for the well wishes, and especially to the friends who brought me cake!  I love you all.
( I just love the ones who brought cake a little bit more😉 )

Guess Who’s Having Brain Surgery Today?

This guy!

FullSizeRender

 

Did you ever just wake up on a random Tuesday morning, and think to yourself:
“You know what I’d REALLY like to do today?
What I’d REALLY like to do today is…

Have a nice, delicious breakfast!

Maybe some eggs, maybe some pancakes, maybe both… definitely some OJ and a really good cup of coffee.”

But then you think:

“Oh shit, I can’t do that, because I’m having brain surgery today and I can’t eat or drink ANYTHING!  I can’t even have a damn glass of water!”

No?

You’ve never had that happen to you on a random Tuesday morning?

Well, I have.  In fact, that exact thing just happened to me this morning!

So color me extremely disappointed that I’m not having a delicious breakfast this morning.  Not even a damn glass of water!

But let’s look at the bright side– after my sad realization about no breakfast, my next thought was “Oooo I get to take a nice long nap this afternoon!”  (A six hour nap, to be precise.  Whilst mine brains are being sliced & diced like pork roll and scrambled eggs.  [Aw man, I’m hungry! I want some pork roll and scrambled eggs!])

Oh well.  I’ll have breakfast tomorrow.

So anyway, let’s get over this big breakfast shock and move onto the brain surgery thing…

So I’m having brain surgery.  NUMBER FIVE!  (yup.)   Around noon.  Today.
On an empty stomach.  (What a pain in the ass!)

No, but actually, breakfast or no breakfast, I’m kind of excited about the brain surgery thing.

Primarily, because 5 brain surgeries is cooler than 4.

But also, because it’s an option.  And that’s why I’m doing it:  because I can!

That may sound kind of twisted (there has been some debate around here if maybe I’m just one of those weird people who’s addicted to self-mutilation–in my case in the form of craniotomies), but what I really mean by “I’m doing it because I can” is this:

I’ve (still) got some brain cancer up there in my brain, as I’ve had pretty much continually for just over 4 years now, and it has grown a teeeeeeny little bit over the last six months or so.  It’s growing really slowly, which is really unusual for glioblastoma. So that’s good.

But because it’s still there, and because it still is entirely within a part of brain that you can pretty much entirely remove without messing anything up, the thought is this:

“Hey, why not skip breakfast and just have brain surgery today, and get that fuckin’ thing out of there so we don’t have to look at it anymore??”

So that’s pretty much what’s going on.

It’s good that this thing has only been growing extremely slowly.  And it’s very good that it hasn’t grown (or leapt) into any other parts of my brain– because there are MANY parts of your brain that you can NOT remove without seriously messing things up.

So while my little brain chance is still… let’s call it “slow and accessible,” we just decided last night to skip breakfast and have a go at it, while the going is good.

Speaking of going when the going is good, I just got back from some VERY good going!

Yesterday morning, I woke up in Montreal.  (I had breakfast there.)  The morning before that I woke up in France.  (Also had breakfast.)
A couple mornings before that I woke up in England, before that Holland, and Spain, and… you get the point.  LOTS of delicious breakfasts (mostly muesli, in fact.)
So I was on a trip!  For a couple of weeks.  Visiting some very lovely friends, in some very lovely places.
And it was wonderful.  And I’m sure glad I went, when the going was good!

And I’m happy to be home, and since this is where I usually have all my brain surgeries (except for that one in Hong Kong), I figure what the hell, how ’bout another!  Less than 24 hours after I arrived!

And in case you’re worried– don’t be.  I’m quite sure that the going will still be good later this afternoon, after I wake up from my fifth brain surgery.  And shortly after that, I hope to eat some muesli.  Or pork roll.  Or both.

Good morning!

 

PS: No, I’m not jogging to the hospital this time, wise ass.  On an empty stomach?  No way!

The First Day of Summer

Today I went skiing for the first time this winter.  On what was actually the first day of summer.  A late start, but it happened.

And the fact that it did is kind of a big deal for me.  Here’s why…

Three months ago, I could barely climb up my stairs.  My legs were so withered and weak from a year of Cancerful brutalization, that it was difficult for me to even just put shoes on, let alone walk or run or do anything to get my legs back to where they were a year ago.  When I used to go two steps at a time.

I’ve worked through it and gotten my legs back a bit, but even now my feet and knees are so sore every day (from another mysterious Cancerful side effect) that I have a hard time walking down my stairs. It hurts.  A lot.

But I’ve been doing it anyway.  I mean, I have to walk down my stairs just to get outside.  To do anything.  And as you might know, I like doing things.  Especially if they’re fun.

For example: I’d been really, really wanting to go skiing this year, before the season was over. Just one day. Just a couple of runs. If I didn’t, it would be my first year not in the snow in a loooooong time. I’ve had a solid ski streak going for probably 20 years. Even through the first few years of cancer.  I skied all those years.

I just really like it.  I enjoy the actual skiing parts of skiing, but what I really love is being outside, in the snow and the sun. On a mountain.  Breathing that ultra crisp, thin air.  And sometimes flying through it at 55 mph.  It’s pretty great.  Just doing that every once in awhile, as I have now for some three decades,  kinda keeps me going in a way.  Always has.

Maybe even more since I got sick.

Two years ago, even though I was all brain cancered-up and barely had any money, I went skiing one day, and it felt f’in great.  I enjoyed it so much that I decided to buy myself a season pass for the next year.

I didn’t use that pass much, but I did use it.  And even though I didn’t use it enough to make it technically financially worth it, I’m glad I bought it. Just having that thing in my wallet, wanting me and reminding me to use it, gave me little flashes of hope– little dreams of me out there on the mountain, living it up and breathing it in.  That barely-used pass gave me something to look forward to.  And actually, that in itself made it totally financially worth it.

Last year, I did something similar.  I managed to go skiing once, and despite the fact that I was still poor and even more cancered up, I bought a pair of ski boots.

This was a big deal for me– it was the first pair of ski boots I’ve ever had that actually fit my weird, wide hobbit feet.  (I realize now that an indication of how much I like skiing is how much pain I’ve put myself through to do it.)

So I got those boots that finally fit my feet.  And I got to use them– once.  And they were great. They didn’t hurt!  (As much as normal, at least.)

I loved those boots.  And I loved that I got them, despite all the reasons not to.  They were a symbol of something.  They were a promise to myself, of more fun to come.

But then, ski season ended.   As it does. And then last summer came, and suddenly things started getting worse for me, health-wise.  Suddenly it wasn’t just cancer, it was all this other bullshit as a result of the cancer that started pulling me down.  It was bad.   Things got so shitty, in fact, that I started to wonder when i’d be able to use those boots again.  I wouldn’t let myself think “if” I’d be able to use them again.  I knew I would.  I promised myself I would.

And even if I wasn’t using them as the winter started (since I was mostly in a hospital bed) I liked imagining using them. And I was still glad I had bought them.  Like the ski pass, they were a symbol of something.  Of Hope.

That shit is powerful.  It has kept me skiing through cancer.  And even when I couldn’t, it has kept me dreaming that I would again.  Hopefully.

Hope has gotten me through this.  It got me to go ice climbing, for some reason.  And in the form of a one-legged Canadian guy named Terry Fox, Hope actually got me to run 27 miles.  In a row.  In Newfoundland.  In an effort to get myself to write a movie that could cure cancer.

Like I said: powerful shit, Hope.  Without it, I wouldn’t have done any of that stuff.     (I can barely believe I did any of that stuff, even with something as powerful as a mountain of hope.)

But after this last year, in which I experienced more of the bad side of being Cancerful than in the first three years combined, my hope was starting to dwindle.

In the very least, it was becoming a little less ambitious.  I mean– ice climbing?  Marathons?  Cancer-curing movies?  Who the hell thinks they can do that shit??  Not me!  I was so sick and weak I was just hoping I could stand up and put my pants on.

But for some reason, I did keep hoping I’d get to use those ski boots again.  Even when I could barely walk.  And somehow, that didn’t seem stupid.

Turns out, it wasn’t. Turns out, I got better.  (Well, a little better.)

Recently, I not only started walking and hiking again– I also started to think I might be able to ski again.  Just one day.  Please.  Just let me have that.  I really hoped I could do it.  I damn well knew I could try.

But winter was over.  It was well into spring now– most ski places had closed. But since who the hell knows if I’ll be around for the next season, I kept checking if any places were still open NOW.  And it turns out one was– Mammoth Mountain.  They had gotten enough snow over the winter that they were still open.  In June.

That’s all I needed to know.  I already had my skis, and my only-used-once brand new boots.

And so, on a day when it was 106 degrees at my home in LA, I just went skiing.  In a t shirt.   On the first day of summer.

I’m glad I hoped that I would.

Because I did.

And I’m so happy that I did.

Granted, I feel like my legs might fall off at the thigh when I’m sleeping tonight, but it was worth it.

Today, I confirmed Hope.

And thank hope for that.

Ruminating

There’s an odd tonality to a life spent primarily in the pursuit of maintaining life: where your main occupation is “fixing yourself,” on a day-to-day basis (eating pills, visiting doctors, etc.), so that you can continue that process again tomorrow, and hopefully (hopefully?)  for many days to come.

It seems rather solipsistic.  Perhaps even selfish.  Just living your life, spending your days, trying to stay alive.

One thing it definitely is (for the most part at least) is a bit boring.  It gets to be a little bit of a drag, trying to stay alive.  Or maybe it’s just that I have cancer.   Or maybe it’s just that the sky is cloudy this morning and my tummy hurts.  I don’t know.

But then when I get thinking like this, what I realize (which I’ve been realizing a lot lately about a lot of the seemingly peculiar things I’m dealing with) is this:

Hey, man– this is what everybody is dealing with.

The primary occupation of every living thing, for the vast majority of their life, is simply working to stay alive.

It’s why we breathe, and why we eat.  It’s why we try not to go crazy.  (This latter activity is a twist generally accepted to be exclusive to the human species, although the behavior of zoo animals leads me to suspect otherwise.)

But that doesn’t seem like much fun!

Just trying stay alive?!  That doesn’t seem like a reason for living!

Unless, of course, life is FUN.  (Or “rewarding,” or “satisfying,” or “interesting,” or ______ [fill in your own favorite adjective])

Because if life is ________, then it is worth working your ass off to get more of it.
When life is _____, it’s the best!

But what if it’s not?  What if life is not ______?  (I choose the adjective “fun,” because for me “fun” also includes things like “interesting” and “rewarding,” “enjoyable” and “beautiful.”)

Well, if life is not ______, then one of two things is probably happening:

1) You’re just not paying attention.

Or, (more likely…)

2) The amount of effort you’re having to put in just to survive, in addition to the amount of pain or hardship you are currently experiencing, is outweighing the positive things (fun) that life is giving you.

It’s a simple mathematical equation, really:

if   FUN  <  SURVIVAL EFFORT + PAIN/HARDSHIP,   then…  LIFE SUCKS.
but…
if   FUN >   SURVIVAL EFFORT + PAIN/HARDSHIP   then…    LIFE IS GREAT!  (or at least OK.  Hooray!)

Pretty obvious, right?  At least if you remember your < and > signs.  To put it in other words:  If the good outweighs the bad, then life is good!  And if the bad outweighs the good, then life is bad.

Duh.

But considering the above, one thing that really jumps out at me is that you can seriously tip the balance of the good/bad life scales if you actually enjoy some of the effort required to stay alive.

Eating, for example, is a required life activity that can be extremely enjoyable.  But even working (“making a living”) can be great– especially if your work is doing something you love to do: like playing music to stadiums full of adoring fans, or building beautiful things, or creating art, or saving people’s lives, or whatever it may be that you find fulfilling.

In other words, if your SURVIVAL EFFORT is actually for the most part FUN for your, then you’re totally tipping the life-scales!  Life, for you, is very likely good.  It may even be great.  In the very least, it’s OK.  And that (trust me) is OK.  It could be much, much worse.


All of the above has made me realize a few things about my own life.  And at the risk of getting even more solipsistic, here they are:

• I have dealt with a lot of PAIN and HARDSHIP in the last four years.  So I have worked like hell not only to survive, but to find (and create) FUN.  To keep my life balance on the good side of the good/bad equation.

•  It hasn’t always been easy.  Sometimes, it’s been really fucking hard.  Especially when, for example, my stomach hurts so much that it’s not even fun to eat.  Or when my body aches so much that I can’t get up and go outside to get some fresh air, and smell some roses.  Or when my mind is so fuzzy that it’s difficult to read.  Or write.  Or even watch a goddamn movie.
Because if you can’t do any of those things, then… well, sitting on the couch or lying in bed all day is NOT as much great as it might sound.
Even going to the hospital is more fun.

• Speaking of which– one of my best (and luckiest) Secret Tricks For Enjoying the Cancerful Life has been finding FUN in the EFFORT to stay alive.  This not only adds to the FUN (positive) side of the life scale, it also takes away from the EFFORT (negative) side.  It turns the effort into fun!  Good into bad!  Like magic!

• All the doctors appointments, for example–  I kind of love them.  Part of that is definitely just from having a reason to get my ass off the couch– but it’s not just that.  I am lucky enough to be deeply and endlessly fascinated by all the whiz-bang technology and intelligence we have amassed in a collective and concerted effort just to keep other people alive.  (Other people!  Imagine that!  While we’re all already super busy just trying to keep ourselves alive.  That’s pretty damn cool.)

• And all of that effort and intelligence and technology and energy dedicated to maintaining life reminds me of something else:  that there is an inherent assumption among all of us living things that life is worth maintaining.
Sometimes, you need reminding of that.  Especially when it’s hard, doing all this maintaining, and not having that much fun.


And oddly enough, just talking about stuff like this suddenly has made things easier for me today.   Magically, the bad is turning into good, and here I am starting to have a good time.  Even despite the cloudy morning and the achey tummy.

FULL DISCLOSURE:  The sun has actually started to come out, and my stomach hurts less than when I started this post.  So maybe it’s not magical.  Maybe it’s logical.  And/or biological.

Whatever it is, feeling better now than I did a few hours ago reminds me that life can be fun.  That there are laughs to be had.  That it won’t always be bad.

Sometimes, it’ll can be really, really good.

I know that this is true.  I just need to be reminded of it, from time to time.   I suspect a lot of other people do too.

And now I’ve done it.  I’ve reminded myself, and you!  And just like that, I feel a lot better.  I mean, I don’t feel fucking AMAZING or anything, but I feel a lot better.  (Which is slightly amazing.)

Point is, what started as something bad has turned into something good.  Suddenly, today is better than yesterday.  Suddenly this afternoon is better than this morning.

Things were cloudy, and tummy-achey, and they kind of sucked.

But I tried, and it worked.

And now I’m smiling.  (Literally.  Not just on the inside.)

And now I’m laughing.

And I’m sure glad I was around to make that happen.

 

Show us your scans!

I’m starting to feel a little objectified.  It’s like, no matter what I want to talk about, people are always trying to get me to show them my scans.  As if they were the only attractive thing about me.  I mean, they’re just scans.  I’ve got SO much more to offer than my stupid MRI results!

(You know, these babies.  I admit, they are pretty sweet…)

August 2014 MRI

(Do they look too big? Are they distracting?  Should I cover them up more?)

Because listen… what I really wanted to talk about today was the idea that all this renewed interest in cancer cell metabolism has a lot of potential, and is really probably neither a silver bullet nor the pseudo-science that some people–

Ahem.

AHEM!

Excuse me!  Are you even reading what I’m writing?  Or are your eyes still fixated on–
Hey!  STOP STARING AT MY SCANS!!


OK.  You back with me?  Thank you.  Don’t make me cover them up, please.

Sometimes I just want to use this blog to have a nice conversation, without everybody foaming at the mouth over “what happened with your MRI Chad!?”  and “tell us about your MRI Chad!”

Can’t we do that?  Can’t we just talk about what I want to talk about sometimes?  And sometimes I don’t want to talk about MRI’s.  Sometimes I need to take a break from thinking about–

[PHONE BEEPS]

“Hey Chad! Show us your scans!!

Ugh.  So much for that idea.  Alright, FINE!  Here you go…

IMG_9762

Big enough for you??

I mean, I know how important MRI’s seem.  How hard it can be to stop thinking about them.
Sometimes I find myself staring at them, even though they’re my scans.

Me and My Spine

That’s one pretty hot scan, if I may say so myself.

But seriously, they’re just scans.  They’re not that exciting.  I mean, personally, there are a lot of things I find more interesting and exciting than the results of my latest MRI.  For example, all the wonderful things we’re doing with the Cancerful Foundation!  (We’re curing cancer, for godssakes!  One moment at a time!)

But seriously, what’s the big whoop with the MRI’s!?  Why is everybody always so worried about the MRI’s?

Oh wait I know!  It’s because it’s the best way to figure out if I’m gonna die!

Right!?

I realize this is putting it very bluntly, but it’s true!  I mean– people don’t worry about MRI scans because it tells them if they can get a better deal on their car insurance.  It’s about death!

Well, this makes more sense to me now.  I guess if it’s about death, then that seems like a reasonable thing to be worried about.

But waaaaait a second… there’s still something that I don’t get:

Don’t we already know that I’m gonna die?

I’m not actually asking you that– I guess I’m just looking for confirmation.  Because it was my understanding (and I was pretty good in science class) that I definitely am going to die.  I’m pretty sure I’m right about that.  Right?

Yeah!  I’m totally gonna die!  I mean, we all are!
(And I’m pretty sure I’m right about that too.)

So what the hell are we all worried about!?  It’s like– The Most Foregone Of All Conclusions!  I mean, we don’t know when it’s gonna happen, but it’s gonna happen at some p–

Oh.

Wait a second.

That’s what this is all about.  When.

It’s the when that we’re worried about.

OK good– I think I’m figuring this out:
So, everybody’s knows that we’re all going to die– me especially– we just don’t know when it’s going to happen.  And we don’t like not knowing when, because we don’t like surprises when it comes to death.  And  this is where the scans come in!  Because if we can see it coming, then…

Then what?

Then we’ll be better prepared for it?

But if we’ve already agreed that we already know that it’s going to happen, then why aren’t we already prepared for it?

I know why– because we don’t want to think about it.

This frustrates me, because I don’t have a choice– I have to think about it.  A lot.  And not because I particularly love or am fascinated by the subject of death– I have to think about it simply because I have to spend so much of my time every day doing all sorts of things to avert it.
It’s kind of a full time job for me, avoiding death.  I guess technically it’s a full-time job for all of us (it’s why we eat, after all ;) ) it’s just a little more obvious (and less delicious) when you’re Cancerful.  There’s a lot more pills.  And surgeries.  And scans.

I’m sorry this post has taken such a turn for the morbid, but morbidity has kind of been following me around for the last four years.  And sometimes it’s just nice to talk about it.  And maybe make a few jokes about it.  Because it’s there anyway– we’ve all agreed on that– so why not?

I have a sneaking suspicion that talking about things, and joking around about things, makes it easier to accept things.  And accepting things makes it easier to not worry about things.  And not worrying about things gives you more time in your day to do fun things.  Like ice skating.  And eating cookies.  Or ice skating and eating cookies at the same time!

 

 

 

But I’ve gotten off track.  (I tend to do that.)  Here I am talking about death and ice skating and cookies, when really what you come here for is Inspiration and MRI results!  And I haven’t given you either.

So how ’bout I cut to the cancerful chase, and give you both!  Right now!  OK, here goes!


My last MRI was… Hmm.  Honestly, I don’t remember much about it.
And I swear I’m not just trying to play it cool, like some kind of Charlie “Cool Cucumber” Peacock.
(Although that would be a hell of a name.  With hilarious initials.)

Nor am I just trying to build suspense, or piss you off (even though I’m aware I may now be doing a little of both).  Honestly, I just…  wait, what were we talking about again?

August 2014 MRI

the MRI, dummy.

Oh!  The MRI!  Right.

Honestly, I don’t remember much about it.
Really!  I don’t even remember when it was!

All of which is to say that:
A) After 4 brain surgeries (or is it 5?), my memory isn’t what it used to be.  And…
B) The MRI itself was unmemorable.  I do at least remember that.

Now that is some epic beating around the bush!
But really– the MRI was unmemorable because it wasn’t much different than the one before it.
It was stable, in other words.
And with brain cancer, stability is a really good thing.  So it was good!

So there you have it in plain terms:  MY LAST MRI WAS GOOD!

“Hooray!”  You say.

Hooray indeed!

So why didn’t I say “HOORAY!!!” on here when I had the MRI?  (It was kind of a long time ago, now that I think about it.)  Why the hell didn’t I post a picture of me with fireworks shooting out of my two upward-pointing thumbs,  surrounded by a Celebratory Chorus Line of  Leggy Blue Brains, like this one:

a C.C.L. of D.B.B.'s

a C.C.L. of L.B.B.’s

Well first of all… it would have been a difficult photoshop job.  (Although, if anyone wants to give it a shot I promise to post the results along with the results of my next MRI.  As long as both are good, obviously.)

But let’s face it– I didn’t need to post a ridiculous picture of myself with a C.C.L. of L.B.B.’s.
I could have just posted the word “GOOD!” and been done with it– everyone would have been satisfied and super happy. (Alright, maybe the word “GOOD” with fireworks shooting out of the G.  Feel free to add that to the image, Photoshoppers.)

But I didn’t even do that.

So what the hell is my problem?  Why do I have such a hard time being super enthusiastic and fireworky about good MRI results?  What am I trying to be, some kind of C.C.C.P., starring in my own primetime animated network special, “You’re One Cool ©ancer ©uring Cucumber, Charlie Peacock” !?

As awesome as those initials are (even better with the Cancerful ©’s), and as much as I would love to have a primetime animated network special about curing cancer in a really ©OOL way, I swear I am not trying to be a C.©.©.C.
So don’t start calling me Charlie “C.©.©.C.” Peacock (or even “C.C.©.©.C.P.”, for short.)

Because I was happy that the MRI results were good.  Fireworks did not shoot out of my thumbs, and there were no dancing brains (as far as I could see, at least) but I was happy.

Actually, I think a better word for what I felt was “relieved“…

Relieved that I don’t have to have any more brain surgeries– for at least two more months!  (Two months, brain surgery-free?  I’ll take it!)
• Definitely relieved that I won’t (for now) be subjected to any more weird experimental treatments, that might save my life, but might also put me in the hospital three times because they’re so hard-core at attacking my cancer that they also attack the shit out of me.  (That happened.  And it sucked.  I mean, come on!  Cut it out!  I’m trying to get better here, not worse!)
• Honestly, I was above all relieved that I would have more time to get used to where I’m currently at– to the latest version of “My New Normal.”  We’ll call it  “My Newest Normal,”  and while it’s still pretty shitty (as I hinted at in my last post), it is tolerable enough that given time, I could see myself continuing to shape a pretty decent life despite its pretty shitty conditions.  I think I can transform this Newest Normal into a wonderfully Cancerful Life!  (That would be a good thing, in case you weren’t sure.)

So yes– I’m happy about the MRI results.  Happy that I’m not going to die.  Yet!  And maybe not for a long time!

 

And one important note on the MRI thing:  I really do appreciate people caring enough to ask me about my scans, because they want to know how I am doing.  I don’t meant to make light of that.  But I wanted to talk about MRIs, and I thought the “Show us your scans!” joke was a funny way in.  (Would’ve been funnier if I had breast cancer instead of brain cancer.)  And when I mentioned this subject to a Cancerful friend of mine, she urged me to write about it.  Because, as it turns out, this is kind of a common issue for Cancerful people.

So there you have it!  We, the Cancerful, are more than the sum of our MRI’s.  We ourselves sometimes struggle to remember that our lives aren’t just what happens to take place between scan days–  they are our lives!

So this is why I try not to get that excited about my MRI’s– good or bad– and why I don’t immediately post the results on here.

Speaking of which, it took me so long to get around to telling you what happened on my last one, that my next one is… TODAY!  If there’s anything interesting or important to report, I will post about it here.

If you don’t hear from me for two weeks, or two months, that’s because I’m busy ice skating and eating cookies at the same time…

Name That Disease!

I’m a big proponent of NOT looking for medical advice on the Internet.
Even though I’m aware that many of the people who find this blog find it because they are doing exactly that.
(In fact, the most popular search that leads people to the Brain Chancery is “How would you know if you had a brain tumor?”)
Somebody thinks they have a brain tumor, and this is where the Internet sends them.  How terrifying is that!  (It certainly makes me an even stronger proponent of not looking for medical advice on the Internet…)

Anyway, despite my misgivings about the Internet’s reliability when it comes to medical advice (It said I would be dead in 14 months– nice try, Internet!), I recently found myself ignoring my own advice and scanning through a bunch of websites, looking for information on a weird medical condition I thought I might have.  And  when I say “weird medical condition,” I’m actually not talking about brain cancer– I already know I have that.  (And I already know enough about it– there isn’t much the Internet would be able to tell me about what it’s like to have a Brain Chance.)

No, so the weird medical condition I was searching for information on is called *******’* ******** (NAME REDACTED SO OTHER PEOPLE WHO THINK THEY HAVE *******’* ******** DON’T WIND UP FINDING THIS BLOG BY ACCIDENT, THINKING IT MIGHT HELP THEM.  BECAUSE WE CERTAINLY WOULDN’T WANT THAT.)

And as it turns out, having *******’* ******** would totally explain a lot of the strange symptoms I’d been experiencing.  And these were symptoms that probably had nothing to do with brain cancer.

Stretch marks, for example.

“Stretch marks?!?” I’d find myself almost saying out loud as I looked with disgust at my newly (and oddly) fat belly, sitting atop newly (and oddly) skinny legs.  “How the hell did I get stretch marks!?

It was a real mystery.  I mean, I had clearly put on some weight over the preceding months, thanks to the medication I was on (as well as the fact that I could barely tie my shoes, let alone go running).

But I hadn’t put on that much weight!  So how the hell did I end up with stretch marks!?  Even my friend who is seven months pregnant doesn’t have stretch marks!
(POINT OF CLARIFICATION SO SHE DOESN’T KILL ME:  She is not fat.  At all.  But she has a human being growing inside her belly!  And still, no stretch marks!)

As it turns out (and as my doctor confirmed, since I certainly wasn’t going to just take the Internet’s word for it), these kind of stretch marks are called abdominal striae, and they are a very common symptom of *******’* ********.
And so were a bunch of the other weird things I’d been experiencing, like the dry skin, and that oddly fat belly sitting atop those weirdly skinny legs.
(They call this “central obesity,” and if you’re smart with your Internet searching you’ve probably already figured out what *******’* ******** is.)

So that explained it!  That is what I had!  I had *******’* ********!

I felt better already.

Funny what a relief it is to be able to pinpoint causalities– to be able to put a name to a thing that ills you.  In this case, the symptoms of *******’* ******** had already begun to fade, but what really made me feel better was knowing what the hell had caused them.

This, I realized, is why people search for medical information on the Internet, and it’s why I wound up doing the same thing: just being able to put a name to the disease gives you a small, desperately needed, sense of control.  By knowing what it is, you are no longer just being wantonly pushed around by some Mysterious Ghost Illness (M.G.I.?) that could, the fear is, do anything to you.  Whenever the hell it wants to.

Oh, I suddenly have purple stretch marks on my belly?  Well then who knows– tomorrow I may just sprout a tiny set of hands out of my forehead!

It’s terrifying being a big fleshy ball of physical, mental and medical unpredictability.  It’s terrifying, because you have no idea what the hell might come next.

Much in the same way that you wouldn’t want to have someone standing behind you all the time, randomly blaring an air gun and scaring the shit out of you– having a disease that you can’t name, or don’t understand, messes with you on a fundamental, instinctual level.   We’d like to be able to at least predict the air horn, or the stretch marks, or the tiny forehead hands before they happen.  Because then we could prepare ourselves.
Or, where applicable, run for our lives.


Speaking of which, I can’t wait to go running again.  I just realized that the last time I went for a run was almost a year ago, when I ran to the hospital for brain surgery.  I can prove it, because we filmed it!

But since then… well, I’ve just been too sick.  But I am getting better.  (I hope, at least!)  And the desire is there– I remember how good it felt, how much it helped me.  How much it made me feel better, even though I was sick.

But I look at that picture, the one of me running with Dutch, wearing my “RUNNING (out of time)” t-shirt… I look at that picture, and every time I think “How the hell did I do that??”

RUNNING-pic

 

Wait, I know… I just put my sneakers on, and I went outside.  And I started to run.

That’s how I did it.

And it always made me feel better.

Hmm.

30 minutes ago I sat in this chair, I picked up a pen, and I started to write.
And it definitely made me feel better.

Maybe I’ll get up and put my sneakers on…

Happy Brain Chanceiversary!

I actually sat down to write a completely different post, but when I looked at the date on my computer, I realized that it appears to be April, in the year 2016.

This is a mind-blowing enough fact on its own, but it also reminds me of another not literally (just figuratively, and quite intendedly double-entedrely) mind-blowing fact:

I have had brain cancer for 4 years.

Four years!  Four freaking ©ancerful years!  Holy smokes… that is 1/10th of my entire life.  That’s a lotta life!

It’s also 328% more life than the measly 14.6 months they tell you you’re gonna get when you get yourself some glioblastoma, and you go looking for median survival rates on the internet.  (See, I told you not to do that four years ago!  Remember?)

So… Four years of living with brain cancer.  Wow!

Now that is not something I would have voted for back in 2012…

4 MORE YEARS!

Or, you know what?  Maybe I would have voted for it, now that I think about the last four years, and all the things I experienced in that time that I never otherwise would have.  (For example: Do you know what cerebral spinal fluid tastes like?  I do!  It’s not half bad, actually.  And I’ve got plenty of extra, so hit me up if you’d like to give it a shot, and maybe I’ll see if I can send you a shot.)

Besides, if I hadn’t voted Brain Cancer 2012, what would the alternative have been?  A Normal Life?  Without Brain Cancer?  That sounds about as exciting as a nap in the park.

Mmmm… a nap in the park.  That sounds nice.

Actually, it sounds boring.  I’ve been so overwhelmed with nap-needing and nap-taking in just the past ONE year that really all I would like to do now is to just stay awake.  Hell, if I could I would stay awake for four more years.  At least!

4-MORE-YEARS-Obama

Anyway, I’ll never know if I would have voted for Brain Cancer or not, way back in the year 2012.  I’m no time-traveller, and I can barely hold a steady conversation with myself today, let alone myself from four years ago.  Plus, I think my current self would probably freak my past self out with my weird scarred gourdlike head and my deep familiarity with  cerebral spinal fluid (including what it tastes like).

I didn’t have a choice in the matter, anyway.  There was no election back in 2012.  This Steady Olde Brain Chance just happened upon me.

And through some wild combination of luck, determination, medical science, chocolate, luck (yes I said luck twice– that was on purpose.  This is The Brain Chancery, after all), and perhaps above all the help and support of people I love (some of whom I’ve never even met!), I have survived, as a living person with glioblastoma, for four years.

On April 5th, 2012– Four years ago to this day– I walked myself up an impossibly steep hill to an MRI clinic in an impossibly tall Hong Kong skyscraper.  After some banging and some whizzing and some who-knows-what, I then saw a picture of the insides of my own brains, for the first of what would come to be many, many times.

And lo, what a surprise this very first brain-gander had in store for me!  Because the image I saw on that day looked exactly like this:

Tumor Tee

The picture looked exactly like that, because that is the exact picture I took at the exact moment I first discovered the tumor inside my head.  The text, of course, was added later.  (MRI machines don’t allow for customization, even in Hong Kong.)  But see that big spot on the bottom left side of each head shot?  That’s my cancer!  That’s what it looked like, on April 5th, 2012– four years ago today.  Well how d’ya like that!

All sorts of things have happened since I took that picture.  And honestly, not all of them have been bad.  A lot of them have been bad, of course.  Just not all of them.   And we don’t like to complain around here in Brain Chanceville… it feels like the fact that we’ve magically retained the ability to communicate at all leaves those skills best reserved for useful endeavours, like writing this blog.  Or writing songs about cancer.

Or even… just talking to myself, since to be honest I quite frequently need a serious dose of inspiration just to keep this whole thing going.  And since a lot of you have said I’m good at that (being inspirational) I have of late been trying to see if I can inspire myself.

Unfortunately when I talk to myself, especially in my head (and especially, for some reason, right when I wake up in the morning), the conversation tends to be more of an anxiety-filled “oh my god oh my god what the hell are you gonna do you idiot” kind of thing than the more inspirational stuff I reserve for the shining Cancerful halls of the Brain Chancery.

I can really freak myself out sometimes, when I talk to myself.  And so one trick that I’ve learned, is that I shouldn’t always listen to myself.  I should try to only listen to myself when I’m being encouraging.  To myself.  And if I’m not being encouraging, then I should tell myself to shut the fuck up and talk about something else for a minute.  I mean, I don’t need myself to remind myself of how precarious my situation is–  I know fully well how precarious my situation is, thank you!

But if you want to give me a firm but endearing kick in the ass, Myself, and tell me that I can do it, because look how far I have come, and doesn’t it feel great when I make it even just a little bit further than I thought I could?  If you wanna say that, I’ll take that.  I will listen.  Because honestly sometimes, I really need a firm but endearing kick in the ass.

And I’ll bet sometimes a lot of you do too.  So here you go, in case you do:

You can do it.

Seriously, you probably can.

And while we’re at it, try this thought on for size too, since it doesn’t cost a thing, and maybe it’s even true…

Everything Will Be OK.

Now that’s a nice one, isn’t it?  And maybe it’s even true!  Maybe everything will be OK!

Hey– maybe it already is.

And maybe I’ll blink my eyes and wake up, and it’ll be four more years from now, again.  It’ll be 2020.  And I will be awake.  Maybe that will happen.  And that would be A-OK with me.

So cheers!  To four more years.

4-MORE-YEARS-Obama

Finding Bright Spots

To be clear, the title of this post is not referring to my MRI scan.  That’s not until tomorrow, and we’re not expecting to find any bright spots.  (That’s a cancer joke, in case you missed it.  A Cancerful Double Entendre, if you will.  Kind of like this…)

Brain Cancer: nuthin' beats it!

 

This post is about a different kind of bright spot.  And actually, I wrote this a couple of days ago, in my journal, with a pen (it was green).  I’m only now getting around to typing it up.  Read on and you will understand why…

[Friday, March 25th, 2016.  10:33 AM]

I took a pain pill, but my head still hurts.

I took a wake-up pill, and had some coffee, but I’m still sleepy.

I was gonna say “At least my tummy doesn’t hurt,” but now my tummy even hurts.

What the fuck.

This sucks.

I had an OK day yesterday– felt pretty good when I went for a walk– but I feel much worse today.

I’m fucking tired of this.

And I don’t want to sleep anymore.  I got a solid 8+ hours last night.  But I don’t know what else I can do right now.  I wanted to make an appointment with an acupuncturist today, which I think is going to help me feel better, but I’m way too wiped out to even figure that out right now.

Fuck.

This sucks.

At least it feels good to complain.  I just wish I had somebody to complain to right now, other than myself.

I think I’m gonna stand up and get away from this computer screen.  Move around a little bit.  See where that leads me.  Might just lead me to lying down again…

[A FEW MINUTES LATER…]

It actually lead me outside, which is really nice.

I still feel like shit, but this is an improvement.  It’s nice out here.

I don’t feel better, but this is better.

It’s funny, I was just sitting here with my eyes closed, and I found myself trying to think of things to be happy about.  There are quite a few, despite everything.

I have a pathological desire to find bright spots.  I’m slightly embarrassed by this, because I feel like other people might see it as forced.  Or even cheesy.  And I also fear that it might make people who don’t (or can’t) do the same feel bad, or annoyed.

But maybe it’s just as likely that they could find it inspiring.  Which would be good.  Maybe a little cheesy, but still good.

Anyway, as people always tell you: who cares what other people think?
(Unless it’s positive, of course.🙂 –Why don’t people always tell you that?)

But now that I’m thinking about it, I do know one thing about this tendency to look for bright spots: it definitely is not forced.

I also don’t think it’s particularly heroic, or inspiring.

For me, I think it’s more just a survival instinct.

Because it feels terrible, to lie in bed and be filled with despair and anxiety about death or sickness or what terrible secrets your next MRI might reveal.  It’s almost physically painful.  Sometimes, it actually is physically painful.

And just as you would quickly grab a hot coal that was sitting on your skin and toss it away in a desperate (and logical, and instinctive) attempt to stop the pain, so do I want the pain of worry and fear and anxiety to stop as quickly as fucking possible, when it does appear.

And so I look quickly for bright spots.  I search for the shimmer of a positive thought in whatever happens to be around me– even if that happens to be a total fucking nightmare.

To save myself from pain (because I am actually a big pussy!) I turn to laughter, or hope, and hope that I can find–or even invent–something that will help me get the burning coal off of my skin.

This, I realize, is why I make jokes about it.  (Cancer!🙂

cancer!!

This is why I wrote a musical about it.  (Cancer!!)
And why I hope to help other people who have it (Cancer!!!) feel better.

Because it’s painful, having this disease.  (Cancer.)

No matter how you got it, or where you have it, it can really hurt.

It can be really scary.

And it doesn’t give you a break– it constantly dominates your thoughts and fills your mind (in my case, literally).

So when I go searching for bright spots, my search is often rooted in The Cancerful.

That might seem odd, but whatever I can do to cure myself, I do it.
It doesn’t always work, but sometimes it does.
And even if it only lasts for a moment, a cure is still a cure.

And when you’re in pain, you’ll take all the cures you can get.

Top of the Mountain

 

Speaking of which, I feel a lot better now.  Stomach, headache, and sleepiness have all ratcheted down to a level that is tolerable.

I have no idea why.  I mean, I could get all grandiloquent and suggest that I just cured myself with my own mind, but I think the reality is that I just needed to close my eyes and get off the computer for a few minutes.  Maybe go outside, get some fresh air.

Hey– whatever it takes, I’ll take it.

Incidentally, I just realized that it was three years ago that I was talking about the positive side effects of having brain cancer.

Three years!  There’s another bright spot, right there.