Thank You (Part Deux)

If I may allow myself to quote my… self (see how ridiculously narcissistic this blogging thing starts to get?), there was something I said a few dozen posts back that I feel the need to repeat:

Thank you.

Some very wonderful friends have taken time out of their busy lives to (among many, many other helpful and loving things) create a fundraiser page to help me get through the crushing burden of having something as trying and difficult and pain-in-the-assy as an old fashioned BrainChance!™

They did this to help me pay medical bills, schmedical bills, grocery bills and schmocery bills.  They did this to help me not spend 3/4 of my day in a state of debilitating stress worrying about things that aren’t even brain cancer:  things like… not letting the life that I worked so hard to build spin out of control and fall apart before I even fall apart.  Things like… not having the time to write and do the things I love the most because I’m spending 3/4 of my (now limited) brainenergy on that first thing, and the other 1/4 on not dying.  You know, things like that.  The myriad gifts that come wrapped up in a shiny little bonus box when you get a Certified BrainChance.™

Thank you, friends, for doing that.

And to those of you who have contributed to this fund, at the risk of repeating myself:

Thank yous.  ALL A’YOUS!

For the love of All That Is Great And Holy And Beautiful In This World (not limited to dolphins and rainbows and the Grand Canyon and the Philadelphia Eagles and chocolate), THANK YOU!  Thank you with an infinite amount of exclamation points.  Thank you with the longest and hardest and coziest e-hug I can e-muster without getting e-creepy.  (If you’d prefer, thank you with an e-handshake.)

Thank you for reading, for considering, and for caring enough to take your time and your hard earned money and to convert it into peace of mind for a piece of mind.  A piece of mind that some of you know well, some of you know only fleetingly, and some of you don’t know at all.  Every one of you who has contributed and who has read this blog and who has reached out in any way at all has helped me and touched me deeply.  And not at all e-creepily.

Not to get all poetic (when I’m already in the middle of being simultaneously grateful and silly– I mean two things is enough, right?), but when this fundraiser thing got started I wrote to my wonderful friend who cracked the whip to get it all going: “it feels like waves of relief crashing upon my tired shores.”  Not only did I just get poetic, I just quoted myself.  Again.  But that IS exactly what it feels like: it feels like waves of relief. Like those waves down the shore in the summertime, those waves that crash softly over your shoulders and tell you that you’re not alone, and that everything is going to be OK.

So thank you for those waves.  For those wonderful, soothing brain waves. My shores are still tired, but they are already starting to feel more calm.  Which makes a big, big difference.  Fighting cancer is a lot easier when you’re not simultaneously scrambling to save your life and your LIFE. Only worrying about one of those things makes a big, big difference.

Speaking of which, to those of you who may not yet have heard about this fundraiser thingymadoodle:

Thank you for reading this neither poetic nor narcissistic blog.
Now watch out, ‘cuz here comes the hard sell!

If you’re at all interested in this fundraiser thingymadoodle that everybody’s talking about, there is a link to it on the top right of the page where it says “FIGHT THE BRAIN CHANCE!”   (You can also get to it by just clicking on this sentence right here.)

Will ya look at that.  E-panhandling!  And I didn’t even have to put on my hobo clothes!  Ah, the magic of the innernet.
(In truth, I am actually wearing hobo clothes right now.  Well… hobo-like clothes.  They’re not that dirty, but they are… informal.)

I am tempted right now to just keep typing the words “thank” and “you” followed by rows of exclamation points until I fall asleep, but I’m already about to fall asleep and I need to take off these hobo clothes before I do so I’d better just say good nightttttttttzzzzzzzzzzztttttttttttttttzzzzzzzzzzzzzzztttttttzzzzzzzzzzztt tttttttttttttzzzzzzzzzzzzzzztttttttzzzzzzzzzzztttttttttttttttzzzzzzzzzzzzzzztttttttzzzzzzzzzzztttttttttttttttzzzzzzzzzzzzzzztttttttz zzzzzzzzzztttttttttttttttzzzzzzzzzzzzzzztttttttzzzzzzzzzzztttttttttttttttzzzzzzzzzzzzzzztttttttzzzzzzzzzzztttttttttttttttzzzzzzzzzzzzzzztttttttzzzzzzz zzzztttttttttttttttzzzzzzzzzzzzzzztttttttzzzzzzzzzzztttttttttttttttzzzzzzzzzz zzzzztttttttzzzzzzzzzzztttttttttttttttzzzzzzzzzzzzzzztttttttzzzzzzzzzzztttttttttttttttzzzzzzzzzzzzzzztttttttzzzzzzzzzzztttttttttttttttzz zzzzzzzzzzzzztttttttzzzzzzzzzzztttttttttttttttzzzzzzzzzzzzzzztttttttzzzzzzzzzzztttttttttttttttzzzzzzzzzzzzzzztttttttzzzzzzzzzzztttttttttttttttz zzzzzzzzzzzzzztttttttzzzzzzzzzzztttttttttttttttzzzzzzzzzzzzzzzttttttthank yoU!

And good night.

Dream sweet dreams for me
Dream sweet dreams for you

Good night everybody
Everybody everywhere
Good night.

Sleep tight.

And thank you.

Good News / Bad News

I realize I generated a bit of a suspense by not updating with the results of my MRI on Tuesday (thanks to all of you who messaged me individually asking what happened).  While that cliffhanger was unintentional, it did get me thinking about the power of this narrative tool (and this blog is turning into a bit of a narrative, isn’t it?), and so now I fully admit that the title of this post and now the length of this sentence (nay, this paragraph) are totally on purpose designed to continue the suspense just a bit further.  Because I know what happened on Tuesday.  I know exactly what the doctor told me.  But (some of) you don’t.

See how suspenseful this is getting?  But I can’t abuse it.  I mean if I just started talking about chicken tikka masala right now, or how funny the Meaning of Life is, that would be pushing the cliffhanger a bit too far now, wouldn’t it?  It would probably just be annoying.  So I’d better cut to the chase, right?  Right.  OK.  I’ll cut to the chase.  So here’s the chase…

The good news?  The MRI looked good.

The bad news?  I have brain cancer.

Sorry to douse the upbeatity of the first fact with the cold reality of the second, but I can’t resist.  I can’t resist for two reasons:

1) As a writer, I’m continually fascinated by the power of the words “I have brain cancer.”  It gets me every time.  And in a funny way.  It’s hard to think of something more shocking you can say to someone (or can hear yourself say) than “I have brain cancer!”  There are some close rivals, like “I just shit my pants” and “I think I’d like to murder a hooker,” but “I have brain cancer” really stands its own with the best of them.  And the brevity– it’s only four words!
16 letters that just knock your fuckin’ socks off!  Say it out loud with me:  “Hey!  Dad!  I have brain cancer!!”   How can that not make you laugh?  I need to get some t-shirts printed up.

2) What were we talking about?  Oh yeah:

2) The other reason I can’t resist pointing out that I have brain cancer (this is where the post starts getting less funny) is that… I have brain cancer.  (Why are you laughing?  You cold hearted son of a bitch, I just said I have BRAIN CANCER!)  No, I mean it (this is where the post really starts getting less funny)– after I got the results of my MRI, I sat there in the doctor’s office feeling… not relieved.  Why was I not relieved?  I’d felt better the morning before I went into the MRI machine (when I wrote this post) because I was excited.  Things were happening.  But now, afterward, with a “clean” MRI on my brain, I felt… kind of disappointed, to be honest.  Let down.  Because this didn’t reflect how I felt, or how I had been feeling.  How I still feel.

So I texted a friend of mine, My One Friend Who Totally Understands What It’s Like To Feel Like You’re Dying, and asked her why I wasn’t relieved.  Her immediate response: “Because they didn’t just tell you you’re cured.”  She was right.  They didn’t tell me that.  So I think that’s why the good news didn’t win the day for me: because I still (and probably always will, until I don’t) have brain cancer.  And there’s nothing hilarious about that.

So now that I’ve beat you up with my jokes and my suspense tricks, I’ll cut to more chasing and drop some succinct and brassy tacks real fast:

  • The MRI showed that the tumor cavity was even less cancery-looking than the previous MRI.  It was, in fact, un-cancery enough that Doctor Who actually used the word “impressive” to describe the results.  Impressive!  My (lack of) brain cancer is “impressive”!
  • We both laughed at how the tumor cavity from the MRI in December looked like a cheap Scooby Doo ghost.  A g-g-g-g-ghoooossst!  (Scroll down to the bottom to see the picture.)
  • I remembered to ask Doctor Who about the seizures & smoothies!  Actually I totally forgot, but then after I left I remembered and ran back in and found him.  “What’s up with all the smoothies?” I asked, “is that always a sign of cancer on the brain, like you said?  Or could it just be the hole in my head and/or healing process that’s causing them?”  And you know what he said?  “Great question!”  That’s what he said!  And like a total Brain Cancer Class Nerd I smiled and my eyes twinkled, and he answered me:  “Actually those seizure symptoms do not specifically mean cancer.  It could totally just be from the hole, or from healing, or from drinking, or even from murdering hookers.”*    (*note, some of this dialogue has been fictionalized, but the gist is true.  I asked a great question, and I got a great answer.)
  • So I feel a bit better about the smoothies & seizures– or at least I feel better about their cause.  Practically speaking though, in terms of their effect on my life, they’re still somewhere between Pain In The Ass and Total Fucking Nightmare.
  • In addition to the above, I still totally feel like shit, so all the good news (frankly) has less practical bearing on my life than the bad.
  • But I’m still here!
  • Oh and Doctor Who and I decided that I will stop taking the Temodar™, effective immediately.  To give my body, and my brain, a rest.  Which is great, because then maybe I’ll start feeling better.  Although reports from other Brain Chancers tell me that it takes 6 months, even a year to get back to “normal” after you stop taking this stuff.  And maybe taking this stuff is the only reason I’ve even made it a year… but I don’t want to feel like this anymore.  Even though I’m alive, it’s really getting in the way of me feeling like I’m alive.  So I’m stopping.  And I feel good about that.

See how tricky this whole having brain cancer thing is?

brain_ghost

If you look carefully, you can see me and Doctor Who laughing in the reflection off the monitor.

Thoughts on Death (And smoothies. And hospitals.)

I’m vaguely enjoying the weight of this morning (2 hours before I go into the MRI machine— this MRI that’s finally making me nervous), I think because it reminds me of the… (wait for it, searching for the word… one minute later… going to thesaurus)… urgency of these times last year.

When every day felt like life or death, there was something invigorating to it. Something exciting. Fun, even.

Today is exciting. And I’m so tired of not being excited, of feeling so perpetually drab, so dull, so physically and emotionally immovable, that any kind of excitement— even this kind— is extremely welcome.
So actually, to be honest, I’m not nervous right now. I’m excited.

(**EDITOR’S NOTE: things are about to get a shade darker–but no more or less honest– so if you’d prefer to end on a happy note stop now! Ah what am I saying, it’ll probably end on a happy note anyway. I’m a sucker for a happy ending.)

THOUGHTS ABOUT DEATH:
If this news is bad news, my first thought will be either “shit, I didn’t get the script finished” or “shit do I have long enough to get the script finished?”
I’m absolutely sure of that. I’ve thought about it so many times. Probably every single day. Definitely every single day.
Clearly it’s the thing I care about most.

OTHER THOUGHTS RELATED TO DEATH (OR, HAVING A TENUOUS GRIP ON LIFE):
It’s odd when every time you leave the house you think little things like “if this is the last time I am ever at this place, should I leave the door unlocked so my friends can come and get my stuff?”
I think this stuff all the time. Like, multiple times a day.

Things like:
– “I should really print out hard copies of all of my scripts & things I’ve written that are important to me, and put them in a big very-easy-to-find-pile on a table in case… well in case things go downhill fast and I’m no longer around to be able to do anything with them.”
And like:
– “Is it better for me to take the freeway to ______’s house, or should I take that back way in case I feel weird and have to pull off the side of the road. If I’m going to seize and die, it’s better if I can pull over into a parking lot.”

It’s really weird being in public places and constantly trying to be aware of if I have Ativan with me (which can stop seizures from happening), as well as some form of ID so people know who I am in case I do pass out and die.

I’m always concerned that Dutch has her collar on too if she’s with me, so people know who she is in case I’m dead and can’t tell them. I don’t want her to get in trouble even if i do.

These are weird subtle thoughts, but they come out of thinking “I might die when I go outside today”, and it’s just odd thinking that every single time you leave your house.
And you’re not thinking it because you’re paranoid– you’re thinking it because you’re trying to be reasonable and logical and responsible. You want to make sure your dog has water in her bowl and there’s a way for your friends to get in in case you never come home.

Also– Despite me trying to make them less so, the seizures are terrifying again, now for several reasons:

1) Not being able to function normally (having to give up on the idea of driving somewhere, having to leave a crowded restaurant in the middle of dinner, and many other things like this that really make me feel like a real stick in the mud)
2) My doctor just had to go and scare me with a “yeah you can totally just stop breathing while having a seizure and die right there on the spot.” Thankfully this hasn’t happened, and I think it’s a bit of an exaggeration (or at least a real rarity) but anyway it’s still scary.
3) A friend’s warning (a welcome one, though) that her epileptic relative is a little brain dead from all the seizing she’s done. The last thing I want is any additional brain deadedness. I WANT MY REGULAR BRAIN BACK, EVEN FOR HALF OF MY DAY!
Man that would be nice!

THOUGHTS ON THE SMOOTHIES:
The smoothies (for some reason this word just entered my head as a way of describing “light pre-seizures” and I think I’m going to keep it that way) seem to be increasing in frequency.
People call them “seizure auras,” and they are what you feel before you actually have a seizure.
Let’s call them “smoothies” from now on. Sometimes they’re like a déjà vu, sometimes they’re a weird sensory hallucination– they’re actually really fascinating to experience and hard to explain. Fun, but scary.

My smoothies seem to be increasing in frequency. I haven’t had any more seizures, just a lot more feeling “oh shit am i gonna have a seizure?” This is one of the reasons this MRI makes me a little more nervous.

The increased smoothie activity could be a result of all the healthy but yummy smoothies I’ve been eating. Or it could be related to anxiety. Perhaps over the MRI, although I truly honestly don’t feel more anxiety right now than at dozens of different moments over the last year. Far less, in fact.

So since there doesn’t seem to be a reason for them, that scares me a bit. Doctor Who said seizures are a sign of “tumor tissue on the brain”, which I need to clarify. Is it not also from the hole in the brain that one gets seizey? I’ll try to remember to ask him this in 2 hours when I see him. Somebody remind me.

For now, I sit here in a gown surrounded by other men in gowns, thinking once more how much I love the hospital.

This place is a damn miracle machine. How the hell did they figure all this shit out?

Thank science they did, cuz as the MRI tech just said with a smile: “You’re still here!” I loved that he said that.

I am still here. Barefoot in a gown. Waiting to climb into the Magical Magnet Tube That Sees Inside My Brain.

How fun is that!

The Meaning of Life *

* …is the name of the movie I was watching and paused to write what lies below.  I’d never be so pretentious (or presumptuous) as to title a blog post “The Meaning of Life” and actually mean it.  

That said, I did just do exactly that.  Well… it seemed appropriate.  To me at least.  You be the judge.

—–

I’ve spent so much time (37.5 years) learning and absorbing: history, science, places, people…  If it all ends soon I’ve barely had a chance to do anything with everything I’ve taken in.  And mulled over.  And played with in my mind.  And reshaped and rethought and reformed into things exciting and new (to me at least).

And you’re sort of taught that that’s the point, aren’t you?  To work with what you’ve learned?  To be able to DO something with the skills you’ve honed over the years, or the intellectual trinkets you’ve gathered and stored and managed to retain because they meant something to you or you saw something in them?

The irony is I finally do at this moment in my life (my life!) feel ready to regurgitate something, to DO something with all of that preparation.  To make something with everything I’ve taken in.  I’m positively bursting at the seams.  Because, are these things we’ve loved and learned as precious if they never get to see the light of day again?  I think they are still precious, but I think they shine even more brightly if we get to bring them out to show to others.  Because it’s precisely that act of making something of them that clarifies and focusses the beauty that caught our eye in the first place.

But what do I want to make?  What have I been preparing for, for all these years?  That path hasn’t ever been perfectly clear, and I haven’t been suddenly handed the answer.  But I do have an idea.  A very good one (to me at least) of what all that preparation has been leading to.  I just haven’t gotten there yet.  But I feel close.

So if the curtain goes down now, or any time before I DO get there, I couldn’t call it a waste (being alive was terribly fascinating, and continues to be– that alone was worth the go-round).

But it would feel like a bit of a missed opportunity.

So why didn’t I already do it?  Why didn’t I already get there?  I’ve thought about this a lot.  The simple answer is I wasn’t ready.  And the other simple answer is that there’s something clarifying about a deadline– particularly when the “dead” part is literal.  Maybe it is this potential rush to the end, this increasingly obvious ticking clock, that has finally lit a fire under my ass and convinced me to get on with the business of doing something with this (both literally and figuratively) swollen brain that I’ve got.  Or maybe the extra and ultra swelling of my brain over the last year has provided a clarity and organization to everything that came in before it.  And made me (even more) bursting at the seams.

Either way, clearly I should be doing something.  And, as quickly as possible.

Well I am writing.  Right now, in fact.  Write now.  In fact.

That’s a start.

I just don’t know if I’ll have enough time to get it all out.

That’s a problem.

That is, to be honest, the main problem.  The brain cancer I can deal with, because I am happy.  I’ve been, happy.  I am a bit lonely with this experience… I am, in fact, sick with experience… but that’s tolerable.

What’s not tolerable is the thought of this brain disintegrating with all of that wonderful stuff I’ve gathered trapped inside of it.  Whether that disintegration happens after I’m in the ground or while I’m still here (my biggest fear is that it’s already begun), I hope I’ve managed to extract enough juice from it and put it on paper so that I don’t go out feeling like I’ve let be buried a piece of perfectly ripe fruit.

Because… well maybe that would be a waste.

And come to think of it, maybe that actually is the meaning of life.

To me, at least.

Now back to The Meaning of Life.

A Hong Kong Orange

Squeeze The Day

Hi everybody,

Just a little update: I’ve got an MRI tomorrow, and for some reason it’s the 1st one that I’m actually a little nervous about. This isn’t for any specific reason, so don’t worry any more than you may already have been worrying.

Ideally, don’t worry at all because there’s nothing me or you or Dutch can do about any of this, and today is a beautiful day and I’m happy to be here as long as I get to be here. And I swam in 2 oceans and 4 creeks and 2 lakes and 1 river in the last month (and at least 3 pools), and boy is this kale / green tea smoothie delicious.

Maybe it’s because I have now officially passed the median survival rate of 14 months that I’m worried. That in itself isn’t a reason to worry– in fact it means I am forever in the lucky 50% of GBM’ers who didn’t die within 14 months. Which is wonderful (honestly – I can’t stress that enough). But since the next looming statistic is “2/3 of you are dead within 5 years”, that means… well it means I’m lucky, but I’m living on borrowed time. And if I’m not, it’s still hard (impossible) not to feel like I am. Which actually isn’t always a bad thing.

I realize that all of that is a matter of perspective, and that I could “choose not to look at it that way” and that all of us “really only know that we have today!” But the reality for me, and it is my reality, is that every 2 months I get to visit The Parole Board of Being Alive, which tells me either (A) that I’m on the Express Train to Outtahere, or (B) that I get 2 months to
believe that’s not the case, at which point I have to come back in for another hearing. Repeat ad infinitum.

You begin to see brain cancer’s kind of a drag, even if everybody keeps saying “But you look great!”

The MRI is certainly the star of tomorrow’s show, but my doctor visit afterwards will also have some import. I’ll get the MRI results, of course, but we’ll also be discussing whether or not I’m going to continue on the Temodar® (Temozolomide) chemotherapy that I’ve been doing. This month is officially my 12th month of Temodar®, which according to the “standard treatment” plan could be the last one. Or it could continue for months, or years. I’m not really sure. I think it’s up to me. I think I get to decide whether to continue or not.

Feeling the way I feel (hazy / stupid / unable to remember things or focus for any useful period of time) I would love to get off this stuff. That said, it may be the very thing that is keeping my Brain Cancer™ at bay. Or maybe it’s not– maybe it hasn’t been doing anything this entire time. But maybe it has.

You begin to see why this is difficult decision to make.

Really all I care about is being able to enjoy the time that I’m here, while I am here. And to be useful. And kind. And to do something with myself. And the effects of this stuff are seriously hindering me being able to do any of that.

(Also, the occasional and terrifying “oh shit, I feel like I’m going to have a seizure I’d better go lay down on a couch even though we’re in the middle of dinner or walking down a street” gets a little old.)

But I keep trying, and sometimes it works: sometimes I find myself just enjoying. Or being useful, and kind.
I enjoyed all that swimming. I enjoy seeing all of you. I enjoy writing. I enjoy Dutch.

So MRI tomorrow afternoon. I will update everybody as soon as I know, probably sometime around 3 or 4pm.

Until then, “We only have today!”

Today, I did manage a swim. I saw at least one of you. I wrote this. And now I’m gonna go get Dutch some dog food. After that, I might watch a movie.

So I still have today (or at least the last 6 hours of today).

If I wasn’t so run down, I’d seize the hell out of it.

I’m gonna settle for a light squeeze.