Guess Who’s Having Brain Surgery Today?

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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

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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

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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!

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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!

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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!

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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

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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.

I’m Sick. (and I kinda like it.)

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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?

There’s No Such Thing As Giving Up

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I realize the title of this post sounds like some kind of inspirational, self-help aphorism (like, “There is no ‘I’ in “team” [or “cancer,” for that matter]), but I don’t mean it that way.  I mean it literally.  I have learned, only just recently, that, in certain important contexts, there really is no such thing as giving up.  Giving up (as the old song doesn’t say) isn’t just hard to do– it’s actually impossible to do.

I was extremely surprised to learn this.

And disappointed, to be honest.  And most of all, frustrated.  But let me provide some context.

You see– only a couple of weeks ago, I was dealing with a whirlwind of pretty serious shit-wrinkles that suddenly made my life, frankly, harder to bear than I was able.   It sucked.  It was too much.  It was the roughest patch of road I had experienced in 40 years, causing me to (not literally, but very much figuratively) fall apart.

And when that was happening, right in the middle of the worst of it, I thought (many times) “I don’t wanna do this anymore.  I can’t do this anymore.  I don’t know how to do this, I can’t, I want it to stop.”

I desperately wanted it to stop.  I needed it to stop.  I COULDN’T do it.  I COULD NOT bear it.  I wanted to press the “off” button on the red-hot poker that was singeing me in the gut and the brain and all sorts of other sensitive spots that you really just want left alone under normal circumstances, and especially so when you already have brain cancer.

So I thought about this – how to make it stop.  I just wanted to give up!  Yeah that’s it– give up!

But how the fuck do you actually “give up?”

And it occurred to me in that moment that it’s actually impossible.  At least in this context — in the context of extremely overbearingly painful life situations — there is no such thing as “giving up.”

I mean, if there was, what would you do?

You can’t just go lay on the floor and drool stick your hand in the air with a white tissue hanging out of it in surrender.  Because that wouldn’t work.  That wouldn’t change a goddamn thing.  You’d still be feeling and going through all the same shit you were before you started drooling on the floor, except now you’re on the floor and your arm is getting tired from holding it up so you’re actually worse off.

And I know this all sounds really stupid, but I had just never been in this position before– the “I SIMPLY CAN NOT BEAR THIS, I JUST WANT TO STOP” position.  (And I’ve even done yoga a couple of times.)

It just felt to me, in that particular moment, that there should be a way to just give up, to make it stop, to opt-the-fuck-out of the deal that was causing me so much pain.  Or at least I wished there were.  And I thought about it, and realized there wasn’t.

Now I’m smart enough to realize that there IS an obvious op-out solution that fully constitutes “giving up,” and which the more morbid of you have probably been waiting for me to mention, and which I’m not going to avoid just to avoid scaring you, or my mom, or whoever else is reading this.

And that giving up solution is to just fucking go kill yourself.  I mean, committing suicide would certainly would seem to meet all the requirements and qualifications of a very official “giving up.”  And it does.

And that thought did occur to me, but only because in running through the logic of the whole situation I realized that it was an option.  It just wasn’t an option for me, because honestly even that didn’t feel like giving up.

I mean, what I was getting at– what I was hoping for– was a way to just STOP.  If you’re playing in a basketball game and you’re playing terribly and your leg hurts and you want to stop, you can just walk off the court and not play anymore.  If you’re reading a book and it sucks and it’s making you unhappy, you can just stop reading it.

Killing yourself, on the other hand, is the equivalent of setting fire to the entire basketball court or the book in an effort to stop participating with it.   But it kinda makes you participate with it even more– just in a different way.  First, it takes a bunch of work.  And it’s gonna make a HUGE mess.  And it’s definitely gonna piss off a whole bunch of other people.  And you might not even succeed at it!  You could fail at giving up!  And so killing yourself doesn’t feel like giving up at all– it feels like a real pain in the ass.

It feels like you should just be able to lie down on the floor and fall asleep and have all the bad things stop.  But you can’t.  I was extremely disappointed to learn that life just doesn’t work like that.

So my point is this: if your life is causing you so much pain that you just don’t know what to do and you can’t possible bear it for one second more… you’re just kinda fucked, because there is no way to give up.

See?  It’s true!

There is no such thing as giving up!

How’s that for inspirational!

Wait, so if you can’t give up… then what the hell can you do?

There’s only really one thing you can do, and that’s to JUST KEEP GOING.

And just see what happens.

And so that’s what I did.

And wouldn’t you know it– things got better.

I’m now about a month out from the deepest valleys of the shitwrinkle.  And owing to a lot of wonderful friendship, a bit of craftiness and hard work, no small amount of spectacular luck, and the kindness, grace and generosity of some unspeakably wonderful people… I suddenly find myself back on my feet.  With real solid ground to stand on.  And my mom just got me a beautiful new rug for my place, so I’ve even got that to stand on!

Oh how the tides can turn, if you just keep going.  And what the hell else can you do?  Because clearly you can’t just stop!

So I still feel like shit, on a daily basis.  My brain is such a foggy semifunctional haze that if you had to jump into it for ten seconds you’d be shocked that I can get a fork to my mouth, let alone string coherent sentences together.  But I’m getting used to it!  I’ve resigned myself to the fact that I have a “new normal,” and this is probably it.  It’s a far shittier “normal” than what I had 4 years ago– or even 1 year ago, but it still (miraculously) includes me being able to walk, and talk, and laugh, and smell roses.  And with solid ground (and a nice rug!) under my feet, that ain’t so bad.  That’s called a life.  And I’m happy to have it.

I don’t have to stop.  I don’t even want to give up.  I get to keep going!

And I think I will.

Oh and yesterday I learned something that’s going to help quite a bit with this whole not-stopping-keep-on-going-thing.  And that is the results of my latest MRI, which I had on Monday, under my awesome new health insurance plan (which is another major miracle).

So yeah those MRI results… I had a full scan on my brain and spine, and other than the fact that I was in the machine for two hours and it got really boring, the results… were good!

It appears that all the cancerspots™ that appeared on my last MRI in December (spots which had already looked relatively stable compared to the scan before that) are now all of three varieties: exactly the same, a little bit smaller, or just not there anymore.  There’s still stuff in there that’s clearly cancer (as there has been for four years now), but the point is, the small bit of cancer that’s in there is not really doing anything.

And since my cancer (glioblastoma!) is the equivalent of a Bloodthirsty-Combination-Scorpion-Lion-Dinosaur-Octopus (B.C.S.L.D.O.), for the shit to just sit there and not do anything for months at a time is nothing less than miraculous.  So something must be working– or some combination of all the various things I’ve exposed my brain to in the last few years.  Either that, or my B.C.S.L.D.O. just isn’t as bloodthirsty as they normally are.  Or maybe he just felt bad that I had to go through that annoying series of shitwrinkles, and felt like he should give me a break for five seconds.

And a break I have been given.  Several, in fact.  More than anything, I’m just so relieved that I won’t have to subject myself to any new surgeries or chemotherapies or experimental virus treatments, for at least a few months.  I can keep on keepin’ on and continue getting used to my Totally Shitty New Normal That Is Perfectly OK Because I Am Still Alive And Roses Still Smell Really Good!

So I’m glad that there was no such thing as giving up.

Because it sure is nice to be around, and I can’t wait to keep it up!

Searching For Inspiration

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The word “Inspiration” has been a big theme around here at the Brain Chancery, pretty much since the beginning.  People have used that word in regards to this blog, and to myself, which always makes me feel a little uncomfortable, but also a little proud– but mostly a little uncomfortable.  I mean all I’m really doing is having brain cancer as best I can.  And it’s super weird when someone looks you in the eyes and says to your face “You’re such an inspiration!”  Because sometimes, to be honest, I don’t feel like one.

The dirty little secret I feel like I need to reveal is that apparently inspiration doesn’t really come that easily to me.

Because as I’ve learned, and despite some of the more inspirational things I’ve said on here… sometimes you’re just not feeling it.

Sometimes inspiration just doesn’t come.
Sometimes you just can’t find it, no matter how hard you try.
And this is particularly hard when you need it the most.

On one level, I’ve been searching for inspiration just for this blog post for a couple of days, because a few people (thank you) have asked me for an update.  And I’ve really wanted to write something.  But to do that I had to… well, I had to actually figure out what to say.

I have a bunch of blog post ideas scribbled in my notebooks that I’ve been wanting to write about for a long time, ones that I saved up, so I considered using one of those pre-made bits of inspiration.  So I scanned through them… but none of them felt right.  They’re all good ideas, and I’m sure you’d get a kick out of each of them (especially the one where I was going to assess whether it’s better to get ebola or glioblastoma.  The answer might surprise you!).  But despite having a bunch of reserve inspiration right there in front of me that I’d saved for a time just like this, I wasn’t feeling it.  None of those ideas brought out that spark.  None of them made me want to write.  I didn’t find any of them… inspiring.

Eventually I realized this is because what I need to talk about is what’s really going on with me right now, which is that I am… searching for inspiration.  And not just for a blog post.  For something a lot bigger than that.

At least when I realized this, I realized I had the title for this post.  So that got me started– “Searching For Inspiration” was itself enough of a tiny bit of inspiration to at least get me writing.  And here I am, a few paragraphs in, so that is a minor victory.  I should be happy about that.  I am.  Sort of.

I need something more, to be honest.  I need more inspiration than a blog post– I need something that’s going to get me through what I’m going through right now.  Which to be quite honest, might very well be the most difficult week of my life.

It’s been a rough start to the new year, to say the very least.  It’s also been a rough start to my 40th year, which began on December 28th (to little fanfare, despite my having written last year on my birthday that I really should be making a point to appreciate these birthdays, each one I get post-glioblastoma is a bit of a minor– no, major– miracle.  So here goes… “Woo hoo I’m 40!  Whoopty f’in Doo!“)

Anyway 40, and 2016, have both been really terrible so far.  And ironically, that doesn’t have anything to do with brain cancer.  Well it does, of course, because everything having to do with me now has something to do with brain cancer.  After all…

Brain Cancer: nuthin' beats it!

Brain Cancer: nuthin’ beats it!

No, but all of this terribleness that’s been happening isn’t bad cancer news– in fact I just had an MRI between my birthday and the new year, and it showed that all of the could-be-cancer-spots in my head and my spine looked exactly the same as they did one month before.  So that’s a good thing.  Things look stable with my brain chance.  Another minor miracle.  And that should be enough to make me happy.  Shouldn’t it?

It would, but the problem is everything else.  Everything else is kinda really bad.

A couple of major shitbombs were delivered onto my Cancerful head just in the past week. I’ve been feeling really wiped out, hazy– a shadow, as they say, of my former self.  So I was already pretty low, and feeling really weak– definitely not ready to receive a couple of heavy blows that would knock me even lower.

First, I lost my health insurance.  Then, I lost my main source of income.

Gulp.

The first problem, luckily, is already somewhat solved– I was able to sign up for new insurance (which is a major wonderful miracle that I’m extremely grateful for) but it’s going to take a little while to kick in.  So I am, currently, uncovered.  Which is scary when you’ve got a little brain chance.  I had some appointments scheduled for tomorrow (including an MRI on my brain and spine) that I’ll be unable to do, and I have to put off for a couple of weeks.  Which isn’t the end of the world– the most important thing is that I will be insured again soon.  And nothing that crazy should (I hope) happen between now and February 1st.  (I trust I won’t get hit by a bus in the next few weeks.)

But the second problem– the income problem– is much bigger, and really came out of nowhere.  I don’t want to get into what happened or why, other than to say I had a good plan and enough money coming in to keep me safe and stable going forward for quite awhile, and now I suddenly don’t.  And that’s a huge problem.  And it has really sent me spinning.

First, it really throws a wrench into my already precarious life situation.  I’ve been incredibly lucky– and have worked very hard– to be able to keep my head above water despite having a Serious Case of Cancer (S.C.o.C.), and now suddenly this little (huge) wrinkle brings my ability to maintain that life into question.  And it also throws a huge wrench into the whole Cancerful plan I’ve been working so hard on.  It means I might have to stop all the cancer-curing projects I’ve been working on–  the things that have been putting wind my sails and keeping me inspired and making me believe that all of this might just be worth it.

I had never in my life felt like I was dealt more bad cards than I could deal with.  And that includs being dealt this one:

BRAINCANCERCARD

(That’s a pretty bad card.)

But brain cancer, for me, also came with a lot of positives– a lot of love, a lot of compassion, and the inspiration to start a mission to help other people in ways I never would have otherwise dreamed of.

Brain cancer lead me to write a wonderful, cancer-curing movie, to start a cancer-curing foundation, to run a marathon by myself in honor of my hero-– it lead me to do all sorts of things with my life that I never would have otherwise done.

So it hasn’t all been bad.  Some of it has been really good.

In fact, since I was first diagnosed, my motivating principle has been to try to make some good of this.

Early on in me becoming cancerful, I randomly had this thought:  “Wouldn’t it be something if you could make it so that this was worth it?  So that you were glad that you got brain cancer!”

When I had this thought, I found it so beautiful that it immediately filled me with inspiration.  That really would be something!  Imagine a life like that!  Imagine what you’d have to do to make getting brain cancer worth it!

And so I did imagine.  And somehow, when I did, I felt like it was possible.  I felt like I could do it.

I felt inspired.

So I figured what the hell, why don’t I give it a shot.

So that has been my goal, my motivating principle, for almost four years now:  To Make Getting Brain Cancer Worth It.

And somehow, I’ve been doing pretty well with that goal.  For a lot of the last four years, my life has been more fun and rewarding than any of my years B.B.C. (Before Brain Cancer).

And I’m not just saying that.  This cancerful journey really has been something else!  I’ve seen, and felt, things that I never would have otherwise– beautiful things much bigger than myself that I would not trade for anything.  In a lot of ways, it already has been worth it.

And here I thought I could keep that going– I could keep being Cancerful, and curing myself on a daily basis by smelling roses and laughing and going hiking and writing and basking in the beauty of a world that felt even more precious and beautiful now that my presence in it has a looming limit.

But the rug was just ripped out from under my feet.  No, more than just the rug– the floor underneath it too.  And the ground underneath that.

So now when I look down, there’s suddenly nothing there– and it scares the shit out of me.  It terrifies me.  And that’s a feeling — fear– that I’m just not really used to.  Which isn’t to say I think I’m a particularly brave person– for some reason though in the four years since I’ve had my Brain Chance, fear isn’t something that hit me a lot.

I remember feeling a twinge of it back in Hong Kong, when the reason for my headache and the new exciting theme of my life — Cancer! — first revealed itself.  Back then, in a Chinese MRI facility on a steep hill in Kowloon, the whole situation was seemed so odd and interesting that I found it kind of exciting.  It was like the excitement/fear you experience when a roller coaster is about to flip you up over that first towering hump and send you flying down towards Who-Knows-What.  There was a level of adventure and an excitement of the unknown that for some reason I enjoyed a bit.  (I may have just been bored at the time, who knows : )  Plus I’m a writer, so it immediately felt like something great to write about.  And I did.  It was a huge inspiration.  And that helped it not be scary.

But this new chapter, this new shit-wrinkle — and the fear I’m feeling now– is just scary. It’s just fear.  There isn’t any sense of excitement and adventure that comes along with this latest curveball, just a large heaping dose of “How Are you Gonna Pay For Your Rent And Food And Health Insurance!?”  This isn’t that exciting, unless it’s part of some weird game show I haven’t heard about yet but I hope gets cancelled.

And all of this just came conveniently at a time when I’ve already been feeling like I barely have the strength to tie my shoes and do a crossword puzzle.

So that’s why this has probably been the hardest week of my life.  It’s a lot to deal with, on top of already having had a lot to deal with (i.e. glioblastoma, hydrocephalus, and all of the fun that comes with being a sick person.), and all of that added up together equals Too Much To Deal With! (TMTDW!)

In retrospect, it’s easy, I guess, to handle having brain cancer and to keep on keepin’ on like a total Cancerful Badass (a TCBA) when you’re lucky enough to have your feet firmly planted on stable ground.  And I have been that lucky.  I have been very, very lucky in that respect.  Because that stable ground for me has been:

  • A safe place to live, and a way to pay for it, that (I thought) I didn’t need to worry about.
  • Family and friends who filled every day with love and support.
  • The ability to get medical treatment at a wonderful hospital with wonderful doctors, with access to the absolute cutting edge of what’s out there for the horrible disease that I have.
  • The people who have followed this blog and what I’ve been up to and have continued to express their support and give me confidence and help me believe that the work I’m doing has meaning for other people, and can actually help other people.  This alone has been enough to get me this far through my glioblastomarama.
  • Speaking of which, the Cancerful Foundation and the things I’m trying to do with it (Curing cancer, one moment at a time– through the Movie, the Cancer Card, the Cure My Day website, and hopefully a lot more cures) has been a wonderful, powerful driving force that not only keeps me going but gets me closer to that ultimate goal of mine: to be able to say that GETTING BRAIN CANCER WAS TOTALLY WORTH IT!

This fear that I’ve been feeling, I now realize, is really rooted in the fact that this latest set of obstacles threatens me achieving that goal.  It threatens the cancer-curing path that I was on.  It means I might have to stop, because right now I’m so overwhelmed that I’m just not sure how to continue.  And that’s the thing that has me so scared.

***

I came to terms with losing my life four years ago, when I was first told that I have cancer (and not just any old cancer, but one they jump over each other to describe as The Scariest Cancer Of All!)

What I guess I haven’t come to terms with is losing the things that I am now trying to do with that life.

I think I wasn’t particularly afraid of dying before because when I got brain cancer, my life had already been pretty wonderful and fulfilling, and I genuinely felt mostly lucky and grateful for that.  It was hard not to feel like I’d already lucked out– because I really had.

And then I somehow survived brain surgery, and then I survived a few more, and I was somehow able to live another day(s) and smell more roses and see more sunsets!  And then I started curing cancer– and not just mine!  Out of nowhere, without expecting it or ever looking for one, I suddenly had a meaning for my life!

So I was given a really nice first round of life, and then an absolutely wonderful and rewarding Bonus Round.  And I couldn’t help but feel lucky and grateful for all of that.  And that feeling kept me going, and it lasted for a long time.  It lasted all the way up until this past week, when the sky crashed down and the ground disappeared.

In retrospect, maybe it was a bad idea to create a situation where my life could actually have some meaning.  (I’m kidding, of course.)  But by giving my life the potential to have meaning beyond itself, I also gave myself something much bigger to lose.  And that, I think, is what has me so scared right now.  I’m scared of losing everything that I thought I could make of this unexpected and wonderfully Cancerful life.

Me, I’m OK with losing that guy– he’s had an good time in his 40 years!  But all this curing I’ve come up with– the movie, the Foundation– those things still have a lot of work to do and a lot of people to help and cure.  But these latest roadblocks I’ve hit have left me afraid of how I’m just going to keep myself going, let alone all the crazy and ambitious and wonderful Cancerful things I’m been trying to do.

I don’t want to stop, but I also don’t have any idea how I’m going to keep myself, and all of this, going.

So there’s my latest blog update!

I’m in a terribly Cancerful pickle!

Thanks for reading!  :)

***

I was a little worried about writing this post because I knew that if I wanted to be honest–and I always want to be honest when I’m writing, especially here–  I knew it was going to be pretty dark.  And bleak.  And not that inspirational.  Because that’s where I’m at right now, to be honest.

I feel like I’ve developed a certain Cancerful reputation (“Chad, you’re such an inspiration!) and talking about how scared I am and how my life is kinda falling apart is a lot less entertaining than singing a song about cancer, or running to brain surgery.  I don’t want to be sad, and I don’t want to write about being sad.  But if I’m being honest, I’m sad. And scared.  Things really suck right now, and I don’t know what I’m gonna do.

And I was talking to a dear friend, and I expressed this concern to her, about being afraid to write because it would be depressing.  And she told me that no matter what it was that I wrote, if it came from me, no matter how dark it was, it would still come packaged with some beautiful little glimmer of hope.

I was surprised by this, because I haven’t been feeling particularly hopeful lately.

But when I thought about it, I realized that she was right.  There probably would wind up being some kind of hopeful twist, if only because I know myself well enough to know that I simply can’t stand the idea of a world (or a blog post, I suppose) that doesn’t have some glimmer of hope.  Because who would want to be a part of that!?

And just that thought made me happy.   Maybe it was even something to write about.  And boom!  Just like that, I had found a little bit of inspiration.

And then I was talking to another wonderful friend (three cheers for talking out problems, and four cheers for wonderful friends!) and in trying to cheer me up, she suggested that maybe this current shitstorm I find myself in the middle of  is a turning point that will actually wind up leading to something good.  Maybe even something better, she said.

And I knew she was just trying to cheer me up, and I didn’t particularly believe that what she was saying was true, but I also have no idea what really is going to happen, because I can’t see over this hill yet.  And this is a really big hill.

And I looked at the hill, and then, suddenly, that fear that I have been feeling became like when you’re on the crest of a roller coaster, about to tumble down into Who-Knows-What.

Suddenly, that same fear that’s been tearing me up and eating me up and waking me up in the middle of the night became a little bit exciting.

Because you know what?  Who-Knows-What could turn out to be something completely wonderful.

Hell, it could turn out to be the best thing that ever happened to you.

So put your hands up the air and scream, because the ride is still going.

Actually, maybe the ride is only just getting started…

beast3