An Update! (He Said Succinctly)

I don’t normally say–well, write–things succinctly, so I’m going to try with this post.  Watch me go!  Succinctly!

For the benefit of our audience who might not recognize that word, here it is…
in 11 different languages! Which one’s your fave?

Arabic:
بلاغه

Chinese:
简洁

Danish:
Kortfattet

Dutch:
Bondig

French:
Succinctement

German:
Kurz und bündig

Greek:
Συνοπτικά

Haitian Creole:
Façon

Hebrew:
תמציתי

Spanish:
Manera sucinta

Welsh:
Gryno

We actually do have an international audience here at the Brain Chancery. But clearly all I’m doing here is not being succinct, for the sake of a joke. That took me like 10 minutes to put that list together. Already off to a bad start. I could have just been short and to the point, and said “it means ‘short and to the point.”

OK let’s turn this thing around… succinctly!  Go!

MY CANCER HAS SPREAD!

To my SPINE!!!

Wow, that was certainly short and to the point.
But it’s true.

And there’s more!  (Information, not cancer.)

And most of the information I’m about to share with you (probably un-succinctly) will make you un-spit-out the chunk of food you may have just ejected because of my succinctly shocking announcement.  (Sorry for that. But thank you for caring so much if you really did just spit something out.  That’s really touching.  And it’s not touching me, which is a plus.
(BTW, if you sharted a little bit when you read it, that means you really love me.

I love you too mom!!! 😉

OK so here’s the fine print on that whole “MY CANCER HAS SPREAD TO MY SPINE!” thing.  Because it’s not as bad as it sounds.  (Which sounds impossible, but you’re about to see why it’s true…)

THE #1 REASON WHY THIS ISN’T HORRIBLE — Plain and simple (and succinct): This is not horrible because the cancer has  only spread to one place.  Well, 2 places, but both are in the same place.  Right next to each other.  And both are very, veryVERY tiny.

Like, the size of a… you can’t even do the fruit size analogy with this one, because there are no fruits this tiny.  (Not even the acai berry, which I don’t actually know how big it is, or how to say that word, but the internet says it’s the tiniest fruit there is.)

Why don’t I just show you how tiny this new cancer is.  Now that would be succinct.

Here, look at this– those two spots that are marked by arrows, those are the spots.9-21-15_spine-w-arrows

See?  They’re totally teeny (and tiny).
All that other white stuff you see?  Don’t worry about any of that– that’s all normal stuff.  I swear.  Soft tissue, peanut butter, stuff like that. (I’m not kidding.  Even though I just made a joke.

When I took the picture, Dr. Hu suggested we get one with my head in it, so you would have a better idea of what was going on where.  He made me squat and move my face until I was in the same position.  It was funny.  I love my doctors.

Me and My Spine

Me, and me with my head cut in half

For reference, my mouth & nose are on the left side of this picture.  Lots of peanut butter over there.  My spinal cord is smack in the middle (that handsome grey stripe that goes from top to bottom).  And the two teeny tiny spots are located up toward the top of the spinal cord.  They look like they’re buried in the middle, but they’re actually located on the very outside surface of the spinal cord.  Which is also good.  (They’re more easily exposed to whatever we want to expose them to.  More on this below.)

WAIT, HOW/WHEN DID YOU FIND OUT ABOUT THIS?  AND HOW DID THIS HAPPEN?
That’s a lot of questions for one question.  I’ll try to be more succinct than you, even though I clearly wrote that long-winded question.
Answer: I had my usual brain MRI about a week ago.  When I did, everything looked good (no new cancer in the brain at all, and the spot they removed during surgery #4 remains removed.)
However, there was this ONE tiny spot (teeny, actually) that we could see in the brain stem, up where the spinal cord meets the brain and says hello.  When we saw this, Dr. Hu wasn’t terribly concerned, but he suggested that I get a full spine MRI to be cautious, to make sure that the cancer wasn’t suddenly all over the place.

So I did.  And the results were, on the whole, really good.  There is no cancer anywhere in my spine, from butt to brain, except for the spot we had seen a few days before that prompted the scan, and the tiny spot next to it.

And that’s a really good thing.  Hence me not sounding overly worried about any of this.  And that’s not me just magically “staying positive”– this actually is, logically, a pretty positive situation when you look at what could have happened.  I could be dead, or my spine could be filled with huge tumors, in which case I would be soon.  But neither of those things are true.  I’m alive, and my spine is 99.9% clean!

BUT HOW DID THIS HAPPEN?  WHY DID IT SPREAD?
Your spine (and mine) are part of the same system as the brain.  They share lots of stuff, aside from thoughts.  Including, importantly, the fact that they’re surrounded by and floating in Cerebral Spinal Fluid (CSF).  That’s the stuff that’s been leaking out of my face– the stuff that I’m overly good at producing.  Individual brain tumor cells can actually float around in CSF, and since I’ve had such a CSF circus (not to mention another brain surgery, which tends to stir the stuff up), Dr. Hu explained that it’s relatively normal that some of my GBM might go for a swim in my CSF and find a new home elsewhere in my BSS (Brainial Spine Situation– not a real thing, but I needed another acronym so I made one up).

So that’s probably how this happened.

Cancer spreads.
Mine did too.
But not very successfully.
Woo hoo!

(Hmm, that’s a decent song lyric.  Read it out loud. If you like it, maybe I’ll put it in the movie…)

I LIKE IT BUT I DON’T WANT TO SING!  I’M WORRIED YOUR CANCER IS GOING TO SPREAD ALL OVER THE PLACE NOW!!!!!!  IS IT!?!?!?!

Geez, calm down with the extravagant punctuation.  The answer is “No.”  With a simple period.

Dr. Hu also explained that any spreading of cancer (including on toast points) tends to make people freak out and think “holy shit, now it’s gonna go all over the place!)  With glioblastoma, however, this is never really the case.  It doesn’t get all fired up to take over your body– in my case one or two cells probably just fell off, took a slow float down the Cerebral Spinal Stream, landed on the shores of my spinal column, and set up a little tent.

SO WHAT ARE YOU GONNA DO?
Good question.  One option would be to do nothing.  To just wait, and see if it grows anymore.  I’ve been through a lot, so this actually sounds like an attractive option to me.  And I’ve still got a bunch of weird experimental treatments floating around in my body, so who knows– this new stuff could just disappear.  But there’s also the chance that it wouldn’t.
With that in mind* (*brain pun) I’d rather be aggressive, as I have in the past.
It’s worked well for me to just keep doing everything I can possibly do, so I’m going to continue on that path.

I’m going to start treatment again.

WHAT KIND OF TREATMENT ARE WE TALKING ABOUT?
Amazingly, I have a couple of options.  I say “amazingly” because with glioblastoma, there usually aren’t many (any) options.  So this is another (very very) good thing.  There are actually things I can do.  I’ll explain only the options that I’m considering, mostly so I don’t have to explain the other ones (at least yet) which will save me from having to type more while I finish my cookies and milk.

Surgery:  Usually this is your #1 go-to, but in this case it’s not an option.  The spots are too small, plus I’m tired of having brain surgery for the moment,  And we don’t even know with 100% certainty that those two spots are cancer.  (The only way to find out is to take some of it out and test it–which means surgery, not gonna do that–or have a spinal tap and test the CSF around that part of the spine.  And Dr. Hu said this test doesn’t even work very well.  So I’m definitely not gonna do that.  I’ve had enough spinal taps for 2015.

CyberKnife, aka Gamme Knife:  This one I’ve kind of always wanted to do, but mostly because the names (not to mention the technology) are so cool.  Technically it’s called “Stereotactic Radio Surgery” (not as cool, but at least it has an acronym– SRS).  This is a surgical procedure where they use two beams of radiation to roast a specific spot inside your brain.  It’s very different than the radiation I got before, which was a diffuse beam spread over a large area.  With SRS, each beam doesn’t do anything on its own until it intersects with the other beam.  So they set them to intersect right where your cancer is, and then… well, your cancer gets cooked.  SRS actually has a really great success rate: somewhere around 85% of the time, within 1 year the cancer is gone and still has not come back.  Which pretty much means it won’t.  So that’s an awesome option to have.
The thing is, again, my spots are too teeny tiny to even do this treatment!  Which is vaguely disappointing for the moment, but obviously a good thing.  AND (this is the really good part) — if the cancer does start to grow, that means I will actually have ANOTHER option to turn to!  And it’s an option that works really well.  So that’s pretty wonderful.  I’ve already got a backup if things get worse.  That makes me even less worried about all of this.

Chemo:  This is what I’m going to do, starting ASAP.  Yes I know, everybody hates chemo, but again, I’m happy to have the option.  I’m going to start taking Temodar again, which is the same exact stuff that I took at the beginning, for an entire year.  One great thing is that this time, I’m going to take a much lower dosage, and I have so much less tumor in there now that this makes sense.  It has a good chance of working.  And here’s a big reason why we think so:

Temodar doesn’t always work for everybody, and sometimes it doesn’t work at all.  But as Dr. Hu pointed out: for that year that I was taking Temodar, my cancer did not spread or grow at all.  It only shrunk.  So I’m in the (small) category of people for whom it’s reasonable to say that Temodar works.  So I’m gonna do it.  And the (much) lower dose– plus the fact that I know this stuff really well, having taken so much of it for so long– both mean that I’m totally comfortable to start on it again.  It’s one pill before I go to bed, and that’s it.  No wait– TWO PILLS!  1 Temodar, and 1 anti-nausea pill.

This time I will ALWAYS remember to take the anti-nausea pill before the chemo.  So there won’t be any more barfing.  And this time I’m taking like a tenth as much, so the mental side effects will definitely be a lot less severe.  Plus I wrote a freaking movie while on the heavy dosage, so this time I should be totally fine.  It’s not going to change my day to day life, or the way I feel and what I’m able to do, really at all.  This is huge for me.  And again I’m not just staying positive– these facts are all True Facts™!  So believe it!

And that’s it for the treatment!  Not bad at all.  Which brings me to the next question…

HOW DO YOU FEEL?
This is a question I get asked a lot, but here I will actually answer it.
It’s an important question.  Because to me, as long as I can maintain somewhat of a semblance of the life I had before all of this (or one that’s even more fun and rewarding and impactful), then I don’t mind the cancer thing so much–  I am Cancerful, and I am happy.  And I will not complain about any of it.
And I am, in fact, happy.  I mean, this is all a huge pain in the ass, but I’m gonna make a movie that cures cancer!  And it’s going to be great!  I mean, did you hear the first song that we did!??  (It’s on this page in case you missed it, and if you’ve heard it already, listen to it again.)

To get back to the question– physically, I don’t feel different at all because of this new cancer.  It’s a bit of a drag emotionally that this is happening (more on this below), but it is not affecting me at all physically.  This is really important, and kind of part of the diagnosis/prognosis– because once this stuff starts pressing on the wrong nerves and making you paralyzed n’ stuff, that’s when you’re in trouble.  But I’ve got nothing even close to that.  Not so much as a numb toe.  We’d never have known about this if it weren’t for the MRIs.  And I’ll keep getting them so we can keep an eye on it (next one is in mid-November (if you’re keeping track, which I clearly am not because I don’t remember, and I didn’t even put it on my calendar).

As far as the headaches and the the leaky head situations:
Turns out these two things may have been related all along.  As you’ve heard, since my surgery in June, I’ve had extra Cerebral Spinal Fluid coming out of my skull.  And sometimes my face.  Since then, we have started to figure out why.  See– most of the scans I’ve had since June have shown that my ventricles, which are empty pockets (naturally occurring) in your brain where CSF is produced, look bigger than they were, and would normally be.  This means that they’re swollen with extra CSF.  So they’re either producing it too quickly, or I’m not absorbing it as quickly as I used to.
Either way there’s too much of it, and this is why it’s been flying out of my temple willy nilly.
But it’s also quite possible why I’ve been having headaches all along.  Or at least, it could be one of the reasons.  All of that extra pressure is bound to cause some pain, and I definitely have extra pressure in there (it was being monitored with that tube that was inside my skull for a week in Philadelphia).  So this is a pretty obvious explanation for the headaches.  I’m actually taking a new drug as of last week that is supposed to decrease the production of CSF.  We’ll see if that does anything.
(So far, not so much.  I’m still selling organic CSF shakes at the Farmer’s Market.  I call it, un-ironically, “Brain Juice!”™  And I’m kind of making a killing–  these Echo Park hipsters love weird shit, and they’ll pay top dollar for it.  And nobody else is selling juice that literally came out of a human being’s brain.

BUT HOW DO YOU FEEL?  EMOTIONALLY?
Mentally/Emotionally I feel, overall… not bad.  I’m not gonna say good– I have to take a lot of pills, I’m still hazy & sleepy & I still get a lot of headaches.  And my face still leaks occasionally.  And I can’t really exercise because it exacerbates the leaking, so I feel lazy and out of shape, which decreases my energy level even more.  Plus I’m a lot fatter than I was before my shitbox WonderSummer — although people keep telling me “you look great!” (Probably because I don’t look dead.)
And this is all really hard.  But the biggest thing that I WAS worried about (for the last three years, in fact) is the moment when I’m so burdened by treatments / tumors / hospital visits, etc. that I can’t really live my life anymore.  When I become a patient, not a person.  I got a little taste of that this summer, and it sucked as much as I’d feared.  But I made it through that, and I’m somewhat back on my feet now.  And that’s making me very happy.  I’m working again, I have purpose, we’re doing some really wonderful stuff at the Cancerful Foundation, and some of that stuff we are about to launch very very soon (you’ll hear about it right away on this blog, or out of my mouth, or on Ellen).

And all of that is pretty much making me feel like getting brain cancer was worth it.

THE CANCERFUL FOUNDATION!
This is the most important thing in the world to me now:

CancerfulI was talking to a friend recently and realized that I’m not scared of dying because it would mean losing my life–I’ve had enough Wonderful Life for a few lifetimes, and I don’t want to be greedy about it.  Any fear I might have about dying right now would pretty much only be because I’m so excited about and proud of all the things we’re doing (and planning to do) at the Cancerful Foundation.  And it absolutely breaks my heart to think of disappearing before all–and I mean all– of that stuff has come to fruition.  Because it’s all possible, and it’s all beautiful, and I know and believe down to my very core how much our work can help–really cure— people who have cancer.  We’re doing things that nobody else is doing or has done.  Things that people with cancer really need (like, to laugh about it occasionally.  Or sing.  Or be talked to honestly, from people who are in the same boat as they).
I believe it’s all going to happen, and I’m already getting to see some of it.  We have already worked so hard and done so much and we’re so close!  But we need to move fast!  Every time something like this happens to me, it revs up my “Keep going!  Get it done, Peacock!” engines.

Speaking of which, I can’t do it all by myself.  So now it’s time for me to act the part of Head Cancerful (get it? My title is a pun!  And I hate puns!  But I clearly love brain cancer puns) and part of the part of being Head Cancerful means… asking you for money!  You probably know this because I’ve probably asked you for money already.

But right now we’re in our first big fund raising push.  We’re doing pretty well, but we still need to raise about $5,000 more by the end of this month (this month!) to hit our target for September and not have to stop doing all the awesome Cancerful things that we’re doing.

So if you can help, please click this link (or the logo above) and give what you can!  And if “what you can” happens to be five grand, then you’re gonna be in the movie.  Or at least your name will be.  And you’ll definitely be at the premier.  But this money isn’t for the movie yet– it’s to to fund our first big effort– THE CANCER CARD! (That’s it below– more details if you click the picture…)
The Cancer Card!We’re hoping to get them printed up ASAP so we can start handing them out– free of charge– to anybody who has cancer!
It’ll cure them when they first hold it in their hand, it’ll cure them when they show it to their friends and get a laugh, and it’ll cure them when it gets them into a National Park for free.  And speaking of which, we’re planning a little Cancerful Road Trip to distribute the cards, and to take some Cancerful people to places that are so awesome and beautiful that they can cure cancer.  (I’ve written about a few on this blog.)

I will keep you updated on the Cancer Cards as soon as we make it happen– so please help us get this curing mission going right away!

Thanks for reading.  I hope I’ve answered enough questions that I can refer people to this post when they ask me how I’m doing.  (So please let me know if there’s anything I missed or that you’re still curious about.)

And I hope I was successfully succinct.

So to sum up, succinctly:

Yes, I’ve got a little more cancer, but maybe I just got a little more motivation.

Cancerfully yours,
– Chad

What a Summer! What…? A Summer?

Now that the summer of 2015 is (unofficially) over, I’m left wondering what it was like.  See, a few days before it started, on June 18th, I had my 4th brain surgery, and in the 11.6 weeks since then I’ve mostly been… well, recovering from that darned brain surgery.

Sure, I’ve had some fun, and I got a little sun, but I also spent a good amount of time in… 4 different hospitals in 3 different states.  I took at least 3 ambulance rides (woo hoo!), I experienced my first spinal tap, I had about 15 different individual fevers, I had a drain put in my brain, and I was hooked up to intravenous antibiotics for several weeks that were probably unnecessary and made me break out into hives.  What a blast!  (It wasn’t.)

But I don’t like to complain, so I’ll quickly shift over to the good news, which is this: Weirdo Medical Summer is now over, and I AM STILL HERE!  Woo hoo!  (That’s a real “woo hoo,” not a sarcastic one.)

Even better, during these last 11 weeks, I somehow managed to accomplish a bunch of stuff that I’m extremely proud of.  And am extremely proud to tell you about right now.

The first thing was, I ran to my brain surgery.  (For the 2nd time.)  Which was cool and everything, but this time, we filmed it!  And made a really cool little film out of it.  You may have seen a preview, but here is the real thing.  I hope you like it…

This film was made with the help and support of a wonderful team of friends and pros who donated their time, and I can’t thank them enough for their efforts.  My hope was that I could turn having to have brain surgery again into something good, and because of this film, I’m glad it happened!  And I’ll be even more glad if the film succeeds at its main purpose, which is to raise a bunch of money for the Cancerful Foundation!  (We were going to make a video of me asking for money sitting in a chair, but this seemed to be a little more fun and inspiring.)

Speaking of the Cancerful Foundation, the second thing I pulled off during my Sad Sickypants Summer was finishing up our WONDERFUL, CANCERFUL NEW WEBSITE!

WEBSITE-home-screen-shot-for-BLOG

If you haven’t seen the new website yet, please check it out.  There’s all sorts of info about what we’re up to and all the ways we’re hoping to cure cancer:
We’re making A Movie, we’re making a magical card that turns cancer into a perk (The Cancer Card!), and we’re making a website that helps people with cancer easily get the little things they could really use help with on a day to day basis (it’s called “Cure My Day“, and it’s basically a bridal registry for cancer patients.  Like: instead of china, a ride to the doctor on Thursday.)

Oh and I’m also going to start writing “Cancer!  The Manual!“– a (not Idiot’s) guide to the things that happen to EVERY Cancerful person that nobody ever talks about.  For example: some of your friends will completely disappear (it’s true).  And every day, somebody who cares about you or who you just bumped into at Starbucks will lecture you about some vegetable or supplement that you absolutely MUST eat “because my friend’s dog totally had a tumor and it totally went away in like 2 days with this stuff and the big pharma companies are just trying to make money off you with their poison!
Stuff like that.  And a lot more.  And it’ll be free.  And it’ll be funny.  I’ve got a good stash of cancer jokes.  And I have learned that Cancerful people like to laugh about cancer now and then, because it rarely happens, and it can totally cure the hell out of you for a moment.  And that’s what the Cancerful Foundation’s mission is all about.

So that’s it!  Wow, that’s a lot.

But in the spirit of Labor Day–  myself and the wonderful Cancerful teammates who are helping me (and who I can not thank enough for their dedication and hard work) still have a lot more work to do.

And we need your help!  Because making innovative new cancer cures ain’t cheap.  It’s definitely not free.  Well, except for the jokes.  Like the one where I filled the bag that was draining cerebral spinal fluid directly out of my skull with blue Gatorade, and asked the horrified nurses if there was something wrong with me.  (OK, I didn’t really do that, but that image just made me laugh, and I bet somebody out there with cancer will laugh at it too.  See, there’s a tiny cured second right there!)

So anyway, if I haven’t asked you already (if you know me, I’m sure I’ve asked you already, but forgive me for asking you again):
Please keep this cancer-curing train rolling at top speed by donating to the Cancerful Foundation!
There are links all over the place on this blog, and on our new website, and even in this series of words right here.
(Did you find it?)

See how easy it is?  You don’t have an excuse for not donating!  Other than simply not feeling like giving us money.  Which is OK, because it is your money after all.  Until it’s ours.  Or somebody else’s.  Like Starbucks.  Which tastes good, we get it.  (Yes, that was totally a backhanded comparison between choosing caffeinated beverages over curing cancer.)  Wait– is guilt a good way to get people to donate money?  I’m new at this, so if it isn’t, then please just ignore the fact that I said that Starbucks thing, and focus on anything else I’ve said or done that you find funny or inspiring and might get you to chip in a few bucks 😉

Plus hey– and I mean this– I deeply appreciate the fact that you’re reading this, and that you care enough to do so. That really IS enough, because it inspires me to keep doing this.  So I’m gonna keep doing this.

I just really want to make this movie happen, and all of the other cancer-curing stuff I’ve been talking about.  I believe in our Foundation and our mission, and I know how much we can help people with what we’re doing.  And nobody else is really doing anything like this, and– believe me– there’s a huge need for it.  For all of it.  And if we don’t do it, nobody else is going to!  So we need to do it!
Chop Chop Peacock, get it done!”  (That’s what I say to myself every morning after I chug my turmeric and cannabinoid oil smoothy.  No I don’t. ;))

So… we’re just asking for help.  No guilt, pushiness or cajoling intended.  Just the truth.  (And a little cajoling, to be truthful.)

We can really help people here.  We’ve already started.  I got an email from someone in another country saying that that video of me running made her friend (who has terminal cancer) smile for the first time in weeks.  And that’s just a preview of a preview of a preview of what we’re doing.  So that feels pretty good.  But we need to do more!  Think of how much more we can do!  And we’ve got the plan and the will– We just need some old fashioned “resources” (i.e., cold hard ca$h) to pull it all off.

And hey– if I have to have another brain surgery and do cartwheels to it this time to make an even stronger case for our Foundation and our mission, I am absolutely willing to… joke around about the possibility of doing that, and then let somebody quickly talk me out of it.

So to sum up…
I jogged to brain surgery for the second time.
Big frickin’ whoop.
Then I got sick.
Boo frickin’ hoo.
But now I’m feeling better, and motivated, and on a roll, and most importantly I’m alive!
Whoopty Frick’ Doo!
(That last one, not sarcastic.  But the other ones yes, sarcastic.)

And now I’m asking for money!
Yippee doo I hope it works!

cancer!!

 

MONEY CURES CANCER TOO!

Thanks for reading.  I’m gonna go to bed.

G’night from the Cancerful!

An Uncommon Two Months

When last we heard from our intrepid Brain Chancerian, he was sitting on his parents’ porch, luxuriously breathing fresh air from a wide open outside sky while bitchily typing on his blog about how difficult it is having people ask him “How are you?” all the time.

Hey Peacock, you think that’s difficult?  {Yes, I do.}  I’ll tell you what’s difficult– why don’t you try spending 16 out of the last 30 days in the hospital?  No, four different hospitals!  None of which let you get up and go outside for even 4 seconds, and all of which have machines that beep murderously if you so much as look at one of the 37 wires connecting them to you, let alone detach and disable those wires so you can get up to pee on your own for once (just once!), without alerting a team of nurses that nature is calling so they can offer their forced and utterly unneeded assistance in answering what has now become a completely unnatural call.  Try doing that.  That is difficult.

{I know.  I just did all of that.  And it totally sucked.  Sucks, in fact.  Because I’m still doing it.  Currently at Jefferson University Hospital in Philadelphia.  I need to pee.  And I wanna go outside too.  And why are we talking to each other like this?  Aren’t we the same person?}

Yes.  Let’s not fight.

So today is exactly two months from my grand Brain Surgery #4.  Two months!  And… I’m still in the hospital.  I’m still, apparently, recovering from brain surgery.  For two months.  This sucks.  This has never happened before.  Let’s hope this will never happen again, or I’m definitely not going to be going into my brain surgeries with so much gusto.

So it’s two months from my brain surgery, and in those two months, in the spirit of a Sopranos recap-the-previous-season montage, here’s what has happened in those two months:

 

• June 18.  Had surgery.  Went home.  Had a terrible headache.  Probably from the Uncommon Cold.  Don’t know exactly why, since nobody’s ever got this cold before.  I’m the #1, and the #Only.

• Got a fever, again don’t know why.  I barfed.  Hard.  And when I hard-barfed, my IBP (internal brain pressure) spiked, causing CSF (cerebral spinal fluid) to start bursting forth from the wound on the side of my head (WOTSOMH).  This was weird.  Turns out CSF is colorless, odorless, and flavorless.  (Yes, I tasted it.  I offered some to Paulie Walnuts too, but he wouldn’t touch it.  He looked at me like I was crazy, and called me a “sicko.”  I laughed.  Paulie is always saying hilarious old-fashioned things like that.)

paulie walnuts

• A couple days later, I’m at home and my head is still leaking, and Christopher and that nimwit pal of his Brendan drive over in another hijacked Comley truck!  I was hoping for a new TV, but this truck was filled with blow-up sex dolls from Hong Kong.  I never seen anything like it.sex dolls

Christopher gives me a half dozen cuz he says he feels bad about my sex life, but I know it’s just a joke, and what he really wants to say is he feels bad about me having cancer, and having to have brain surgery again.  He gets real scared about that shit.  I’ve learned that most guy friends are really bad at communicating about cancer.  Illness just freaks them out– most of them just never want to talk about it.  Although Christopher– I gotta give him credit, at least he tries.  Anyway so I turn down the dolls because I already have enough, but I tell Christopher I just don’t want Uncle Junior up my ass when he figures out who tipped that rig full of plastic pussy.  Cuz you know Junior, he’s gonna find out, and he’s gonna go frickin’ bananas when he does.  I don’t need that shit, I already got frickin’ brain cancer for godssakes.

• Things are too hot around here, and I still got a BAD headache, so I decide to drive up my sister’s place in north Jersey.  It’s on a lake, nice and peaceful.  I could use some of that.

• Turns out I’m not allowed some of that.  I go up there, we go out on the boat, we drink some beers, everybody’s havin’ a blast.  Then we go home, I go to bed, and I wake up in the middle of the night and barf all over myself.  I don’t remember anything after that– my brother-in-law found me lying on the bed unresponsive the next afternoon.  They wisely call an ambulance and get me to a hospital.  This is the last time I’ll be a free man for the next 10 days.

• So I stayed at that hospital (Overlook, in Summit NJ) for the next week and a half.  At first, they think I have a really bad infection that got me so feverish I passed out and kind of temporarily lost my mind.  So to fight the infection they started me on 2 types of antibiotics, 3 times a day (I mentioned all of this in my last post in more detail, I’m recapping here just because we’re doing one of those “What happened last season” recaps.

• While I’m at Overlook, they keep testing my blood and CSF over and over, but they can’t really get a handle on what kind of infection I have.  The fluids just won’t culture, and if they don’t then it’s impossible to determine which bug I got or how to fight it.  So they send me home to my parents’ house, and continue me on these really high doses of broad-spectrum antibiotics, which I get delivered at home and am able to self-administer using these neat little balls that contain the antibiotics…IV stuff

You just hook the ball up to an input tube already stuck in your arm, and once you connect it and open the valves, the ball begins contracting like a rubber balloon (which, essentially, it is) and slowly pushes the antibiotics into your arm.  So you can carry the ball with you wherever you go, which is great.  But you still have to do it 3 times a day, cleaning all the connectors and tubes before and after every change, so it takes a long time to do, overall.  Overall, it’s a pain in the ass.  You may not be in the hospital, but you’re still a patient.  At least you don’t have to warn somebody every time you want to pee.

• So this was my life for the next week, hooking two of these things up to my arm for a couple hours 3 times a day.  Nicer than being in the hospital, but still a pain in the ass, and a lot of work.  I’m still officially a patient, not able to have a regular life.  Most of my time is consumed with managing drugs or resting or just flat-out sleeping.  The highlights of that week were going to a gorgeous sculpture garden in Trenton with my mom, and putting together a puzzle with her a few days later.  I gotta remember to do more puzzles.  This puzzle was of The Shack, which if you’ve ever been to Long Beach Island, you would recognize…

The Shack, LBI

• That was an alright week, unfortunately it ended with me getting another fever.  Everybody was worried for me, even though I wasn’t for myself (the fevers were coming almost once a day, but they weren’t very bad, and they were going away quickly every time).  And since the Worrying Everybodys all wanted me to go to the hospital, I conceded, and found myself back at Overlook Hospital by Friday night.

• That stay was luckily a very quick one.  Nothing happened, and I was able to leave the next day.  One thing I learned was that they were still unable to culture anything from the samples they had taken when I first showed up there.  So this wasn’t looking good for being able to figure out what exactly the infection was.

• Back to Pennsylvania, and on Sunday the 9th of August I was able to do something pretty awesome: I went to the New Hope Auto Show with my dad.  This was something we used to do every single year together.  I think we were both really happy to find ourselves there again together, still drooling over the E-Types and making jokes about why we weren’t the ones who got to have Ferarris, when clearly we would appreciate & operate those cars as well as or better than any of the losers there who were actually holding keys with a yellow shield and a black horse.  One cool thing though is there were at least 4 cars in the show that were exactly the same as cars my dad had owned back in the day.  One was a DeLorean, another was this Porsche Speedster kit car, almost exactly the same one (possibly the same one) my cousin and I sent into a full spin at high speed on a 90 degree corner on Forrest Grove Road, almost slamming into a telephone pole, but finally just skidding to a stop– completely sideways– about an inch before we wrapped the side of the car around said pole.  You should have seen the look on my cousin’s face. And I’m sure he would say the same thing of me.

That was a fun day.  And Dad didn’t find out about it until quite some time later, which allows it to remain a positive memory (well that, and the fact that neither the car nor its occupants got a scratch on them).

porsche speedster

 

That’s the car.  If you look closely at that picture, you’ll notice the IV input on my right bicep, and a bulge in my pocket which is actually the shrunken antibiotic ball.  Of course Dad and I made lots of jokes about my shrinking portable balls, having 4 balls, etc.

• So this was all only 10 days ago, and at that point it seemed like everything was going well and headed in the right direction.  I was still getting headaches and minor fevers, and my head would still bulge with CSF fluid now and then, but overall it felt like I was improving.  One major positive was that my head was no longer leaking — no matter how much it swelled (and the pressure increased) the CSF was no longer leaking outside my face.  So the skin had clearly healed.  Which took a long time to happen– I was afraid it was never going to happen.  But the fact that it did is huge, since the wound is not open anymore and we don’t have to worry about things getting in there anymore.

• 10 days ago things were looking great.  So why is it that I’m writing this from ANOTHER hospital room at 1:22AM on a Wednesday morning?

• Well, the reason is that a week ago, I was back at my parents’ house when I got a REALLY bad fever, and barfed again, and also had started to develop a weird rash covering most of my body. All of this freaked everybody out, including my parents and the doctors at all my previous hospitals, and they all said I needed to go to a hospital, just to be safe.  So I went.  Late Wednesday night.  This time, to Jefferson University Hospital in Philadelphia.  A great hospital, a lot closer to home.  With a real neuro-surgery staff.  That’s why I’m here.

• I arrived here on Thursday of last week.  On Friday, two things happened.  1) I GOT A FREAKIN’ SPINAL TAP!  A real honest-to-God SPINAL TAP!!!  If you’ve ever wondered how painful a spinal tap is, here’s a hint: on a scale of one to ten, it goes up to…

Pain Dial

I also learned that the official, cooler name for a spinal tap (this is only for doctors who perform them and people who get them) is a “lumbar puncture,” or “LP” for short.  I do have a soft spot for “Spinal Tap,” but I kinda like “Lumbar Puncture.”  It’s not quite as scary because it sounds like Babar, but at the same time it contains the words “lumbar” and “puncture” right next to each other, so I guess it is as scary.  If you were gonna have one (Don’t.  Trust me.), what would you want to call it?  A Lumbar Puncture, or a Spinal Tap?  Or perhaps, a Lumbar Tap?  What about a Babar Tap?

And what if, instead of having a six inch syringe jabbed into your spine, you were naming a band?  Which name would you use then?

Babar Tap

So I had the Babar Puncture, which hurt a lot (imagine having a hundred powerful funny bone tweaks, but inside your spine, and all within a few minutes).  Here’s a picture of the needle in my back…

Back Tap!

And then, about a half hour after the tap, I had a hole drilled in my skull…

Brain Drain!

Brain Drain!

The hole was drilled to put in a drain, to help relieve some of the pressure from my overly-pressurized CSF.  So I had a spinal tap, and then a brain drain, all in the same day.  I involuntarily reached new levels of badassness after that particular Thursday.  And I’m tempted to go into some detail about the tap & the drain, since they’re both super interesting, but I’m afraid I have to cover too much in this post and it’s already too long.  So maybe I’ll dedicate a future post entirely to The Tap and The Drain.  (That’s a good name for a bar, if I ever own one or take one over by force.)

• Since all the Tapping and the Draining, the routine has basically been a lot of regular tests + taking samples and seeing if anything will culture to reveal what the bug is that’s been causing all of this.  And if nothing will culture at all, that would mean I don’t even have an infection.

And as it turns out…

  • Nothing has cultured.  Since way back to when I showed up at the first hospital, covered in pee and barf, with a raging fever that everybody thought must have been caused by an infection of my CSV, and which we have been treating with antibiotics for over 3 weeks now, nothing has cultured.
  • Now, most of the doctors are circling around the idea that I don’t have an infection at all.  A few days ago only one of them was saying that, but now they’re all saying it.  I was hesitant to believe it at first as well, since a lot has been happening to me, and something must be causing it.  But what?

As it turns out…

  • The thing that might be causing this (it’s currently the only reasonable option based on the evidence we have) is… you’ll never guess…  my UNCOMMON COLD!  That experimental futuristic cold I got 2 months ago!  That could be the thing behind all the fevers and the headaches… and… hell, maybe even all the CSV swelling and leaking!  That damn cold could be responsible for all of it!  It could be rigging the election as we speak!!

I’m still not 100% sold on this theory, but it is the best theory we have, based on what we know.  Plus, no one has ever gotten this treatment before.  So we have NO idea what could or could not happen.  They’re writing the small print for this stuff based on what is happening to ME, right now.

And we may never know, for sure.  Unless some strange evidence pops up revealing something that we never would have thought of, it’s likely that we’ll never know with any real certainty what if anything that cold virus did or did not do to me.

But the thing is, right now there’s not a whole lot else that COULD HAVE done all this weird stuff to me.  There’s one mystery player in this game that we don’t know much about, and we know a lot about all the other players.  So it might be the easy thing to do to blame everything on Mr. Mystery Cold, but that may also be exactly the right thing to do.  I already like the idea that he’s been causing the headaches all along, because they have been annoying and for some reason it’s better to at least have a concept of why they have been happening.

So all of that is speculative– I’m not sure how much of it even I believe, and it’s all been happening to me.  But I’ve given you the evidence as it’s played out, and I believe I’ve written it all up pretty accurately.  (If I was mistaken anywhere, I blame the Uncommon Cold.  I also blame it in advance if the Eagles fail to win the NFC East this year.)

But wait– HERE’S THE GOOD NEWS!
(And this news is actually unabashedly good.)

Regardless of what the mystery cold virus, or the mystery infection is or is not doing, we are sure of one thing:
Something has clearly been happening inside my brain for the last nine weeks, post-surgery.  It started with an unbelievably bad headache, continued into CSF leaking and swelling, matured into even more (but less painful) headaches, graduated into weird quick fevers that are sometimes super mild and sometimes fast and extremely furious.

All of that stuff has definitely happened.  And most of it has taken place INSIDE MY BRAIN. 

What this could mean for my brain cancer (funny that I haven’t even mentioned “cancer” until now, isn’t it?) is generally very good.  Because all of these things that have been happening (especially the stuff that has been causing me pain, and headaches) indicate that battles are being fought in my brain.  My immune system has been seriously stimulated, and has been working serious overtime fighting battles (whether real or imagined, it might not matter) inside that brain.  And remember: this is the exact idea behind all those immuno-therapy clinical trials I have been doing:  to get something cooking inside the brain so that your immune system is inspired to come in and fight it.  Because once your immune system gets in there to fight (a fake cold, or a real infection, or Donald Trump or whatever) there’s evidence that it will notice the cancer that is there, and it will try to do away with it.  And it has the ability to do that.  There are a few cases of long-term GBM survivors who, it turns out, had some kind of unrelated infection that wound up aiding their body’s own ability to get in and do away with their cancer.

This is the idea that all of these immuno-therapy trials are based on.

So, as it turns out, I may have just gone through not a shitty month of pointless and boring hospitalizations, but a crucial month of a really funky backdoor specialized customized Curing Of My Own Brain Cancer.  It could turn out that that is what just happened.  It could turn out that I never have to go to a hospital again.  In that case, of course, this will all have been well worth it!

Clearly this could also be a very glass-half-full way of looking at things, and I am admittedly prone to default to that rosy position.  But it is fun to imagine that all this nonsense could be the thing that winds up curing me!  That the uncommon cold really does cure brain cancer– just not in any sort of predictable way:  “He had a headache for eight months!  But then his GBM just completely disappeared!  Can they get rid of the headache part and keep the curing part somehow?

 

“How Are You?” “Not That Great! And Great! And In Pain! and Also Sometimes Not!”

I don’t know if I’m the only Cancerful person who is driven (slightly closer) to the edge of madness by this well-meaning question: “How are you?” And its equally well-meaning normally-rhetorical cousins “How are you feeling?” / “doing?” / “holding up?“, etc.

The problem is twofold:

1) I get the sense when people ask me these questions that (because of my Cancerful circumstances) they would actually like an answer.  They really do want to know how I am doing.

2) I feel obliged to answer, and to answer honestly.  Because if I just smile and say “fine!” or even “OK!”, I’m lying.  And I don’t like to lie.  Especially to people who care about me.
But see, the real answers to these questions are REALLY complicated.  It’s A LOT harder for me to answer how I’m doing than it is for you to ask.
Because…
I’m good I’m bad I’m happy I’m angry I’m shitty I’m wonderful I’m alive and extremely grateful for that but I’m also scared and frustrated sometimes and my head really hurt 10 minutes ago but I would not dare complain right now because there are people who… wait, I thought we were going to have lunch?  I’m hungry.  Can I please not be honest with you right now?  Can you take that question back?
You see my dilemma.  This happens to me at least a half dozen times a day.  Via mouth, email, text, skywriter, you name it.  Just this morning I awoke to two (2) “how are you feeling” emails.  And that’s before I even got out of bed.  I still have to answer them.  (I’m still in bed.)
Yes, it is wonderful and lucky to have friends and to be cared about.  But I am not going to respond to those two emails with an efficient “fine!”, or anything like it.  I’m a pain in the ass like that.
And I can’t even begin to be honest with those two people right now.  I have to pee!  I have to eat breakfast!  I have to remove this IV antibiotic drip from my arm!  I have to get out of bed to do all of those things!  Shit, when am I gonna be able to tell those people how I’m doing…
I remember a few years ago some European friends discussing how silly it is that Americans are always asking each other how they are when they don’t really care or expect an answer.  I agree with them now.  We seem to be the only culture that does this as a regular informal greeting, and it really is kind of odd.  Especially considering the fact that we almost never give a real answer to a “How are you?”  So why do we ask it?
The difference is, in my case, people usually actually want to know.  It’s how they show me they care.  And I appreciate that.  I just don’t know how to technically handle the problem of answering the same very complex question over and over every single day.
In fact, solving this very problem was one of the main reasons I started writing this blog.  It sort of works.  I need to update it more promptly when something happens, so people already know before they ask me.
For example, I need to update it right now on what happened to me last week.
Which was that I ended up in a hospital on a leafy hill in northern New Jersey with an infection in my brain.
So if you happened to ask me “WHAT’S GOING ON?” AND “HOW ARE YOU DOING?” right now, here is how I would answer.  (NOTE: This information is only valid for a maximum of 15 minutes.  Things change fast with a BrainChance.  This is also part of my problem.)
So…
Q: “HEY CHAD, WHAT’S GOING ON?”:
A: Well, I’m sitting outside on my parents’ porch (I got out of bed) and I am typing this blog post while I wait for a nurse to come here and draw my blood and help with me with the intravenous line of antibiotics that I have had hooked up to my arm for over a week now.  I’m getting a little specific, but that’s what’s going on.   But why don’t I start from a little further back…
So last weekend (last last Saturday, to be precise – 10 days ago) I had just arrived at my sister’s house in NJ after traveling from the West Coast.  My head at that point was relatively stable; wasn’t hurting too much, hadn’t leaked in a good 5 days.  I was on the mend.  And then, after I went to bed, I suddenly got nauseous.  And I threw up.  And that threw open the Gates of BrainHades.
Which is to say, something clicked when I barfed that started my head hurting AND leaking again.  This had happened before, from the internal barf-pressure, (IBP).  In fact, IBP is what started this whole leaking thing in the first place.
So that wasn’t good.  But what was even worse is that it appears I already had some kind of infection going on in my head.   And all the leaking got the infection (which was probably isolated to the skin around my suture) suddenly spreading into places where it could cause some real trouble.  Like inside my brain.
So I suddenly got a bad fever.  And then I passed out.  And I may have had a seizure.  I definitely peed myself.  Whatever happened, I also became completely unresponsive, so my family called an ambulance to get me to a hospital.
And that’s where I wound up staying for an entire week.
WHAT HAPPENED AT THE HOSPITAL:
– An MRI showed a bunch of nothing really, which confirmed my post-surgery MRI that said everything with the surgery went well.  So that was a good thing.  As far as cancer, things are looking alright.
– A battery of brain tests showed that things were under control fever-and-seizure-wise, which was great.
Here is a picture of all the diodes they had hooked up to my head.  For a week.  This was a major pain in the ass.
IMG_1910
 – A couple of tests showed that I definitely had some kind of infection of the CSF (cerebral spinal fluid); that clear liquid that surrounds my brain, that has been leaking and causing trouble.  This infection gave me the high fever and made me forget the entire 48 hours surrounding my admission to the hospital.
– To combat this infection, they started me on a high dose of 2 different IV antibiotics.  Which I’m not that psyched about, but this is what I have to do to clean up my brain, so I’m doing it.
“SO HOW ARE YOU FEELING?”
In general this has all been a pretty serious ordeal, and I’m pretty sick of spending my time and energy “recovering.”
I’d much rather be spending my time and energy “doing things.”
I’ve got a headache that comes and goes: some of it lingering from the original Uncommon Cold headache, and some of it caused by the leaking / swelling of my head.  I have to be careful to sit and sleep pretty much upright, to keep fluid from building up, and to make it easier for it to drain down inside my body.
Luckily they were able to check me out of the hospital on Saturday night.
So now, I’m just staying at my parents’ house, administering the IV antibiotics to myself.  Which isn’t very hard, it just takes a long time to do, and I have to do it 3 times a day.  So it’s kind of my main job at the moment.  It’s supposed to continue for another couple of weeks.  It’s even more of a pain in the ass than people asking me how I’m doing.
It’s 2:55PM:  and a guy just arrived to draw my blood and replace some of my IV equipment, so I’m going to pause writing this post…
8:09PM:  Wow, the last 5 hours were pretty eventful.  And not necessarily in a good way. In the spirit of “What’s going on?” here’s what happened:
– Guy came, drew my blood.  That was all fine.
– He also took my temperature, which was slightly feverish, out of nowhere.
– Just after he left, this feverish temperature suddenly made me feel like I was going to barf.  (It also could have been all the sparkling water I had just chugged.)  Either way, barfing means IBP.  Which means leaking CSF (cerebral spinal fluid).
– I barfed.  Not much, but enough to get the CSF running again.  Luckily, it didn’t leak OUTSIDE my head, it just started to build up in a lump under my temple.  This is an improvement, but it also causes a killer headache.  So now I’ve got that going for me.
– In addition to the headache, my temperature reached 100, which suddenly caused some serious cold sweats.  But then my fever broke, and disappeared.
– Right now, temperature now seems to be getting back to normal!  And I’m feeling… well… could be worse!
So that last whole thing was what happened to me while I was ostensibly in the middle of explaining to you what was happening to me.  And that’s not even getting into how I feel about all of this.
Wait, now I get it.

“Hey Chad, how are you feeling?”

Fine!

What A Trial! (And why it’s worth it.)

Turns out when it comes to brain surgery, the 4th time = not a charm.

Well, I suppose it has had its charms… I mean, the surgery itself DID go extremely well: all the visible brain chance was removed, and I was able to wake up (yet again) with all my functionalities fully functional.

That’s lucky.  I would be remiss to short-change those facts.  Because those facts are a Real Big Deal (RBD).  And I’m alive, which is another RBD.

Plus… the future looks bright if you look at it right.  I mean, it could be that this was the last treatment I ever had to do for my glioblastoma.  The chances of this are extremely small (this being glioblastoma, after all), but it could be, that I’m all done.  I mean, what if I never had to do any treatments ever again?  That’s a fun thing to think about.  Wouldn’t that be something!

Honestly I wouldn’t mind having to do more, this is some serious shit I’ve got and I’m lucky to be alive at all… I think I’d just like a little break.  A year off from surgeries would be nice.  At least.

Because this one has been a bit of a pain in the ass.

It’s funny though, my experience with brain surgery #4 is probably actually way closer to what you’d normally expect from having brain surgery… i.e. it should be a bit of a pain in the ass.

Well now I know what that’s like.

As of today, I am feeling better.  But I am recovering, still.

The headache was awful, and it’s still there a tiny bit, but I’ve got it under control with the meds, and it seems to be on the way out.  As for the head leakingthat stopped for a couple days, which was an enormous relief– I mean as great of a party trick as it was, you don’t really want your face leaking brain fluid all the time.  It’s a bit disconcerting.

So that stopped, which was nice, but then it kinda came back a teeny bit in the last 24 hours… which is, again, a bit of a pain in the ass.

But there isn’t much I can do, besides just taking it easy, and resting, and healing.  And so that is what I am doing.  (And it’s kind of driving me crazy.  I mean, I am perfectly capable of lying on the couch all day, but I really kind of despise the notion of me lying on the couch all day.  I’m hard on myself that way.  So right now, for example, to keep myself from getting depressed, I am sitting in a chair.  And typing!  This my exercise for the day.)

One of the funniest questions I’ve gotten in the last couple of days (and amazingly, I’ve actually gotten it more than once) is:

So what else have you been up to lately? “

This is a bit like digging yourself out of a collapsed mine shaft, and, face covered in black soot and still coughing coal dust, having somebody see you and say “Hey, what have you been up to lately!  You know, besides digging yourself out of that collapsed mine shaft?”

I JUST HAD FUCKING BRAIN SURGERY AND MY HEAD HAS BEEN LEAKING FOR A WEEK, what the hell else do you expect me to be up to?!  Learning to play the fucking tuba?

For the record: I have not been up to anything else lately.  Just the recovering from brain surgery thing, which I think is pretty important and worth most of my attention.

Oh wait no– now that I’m thinking about it, I realize I’m totally lying.  I have been doing something else, when my head is not pounding or dripping cerebral spinal fluid or I’m not watching “Blazing Saddles.”  I actually have been moonlighting a little bit, from my comfy spot on the couch (and/or this chair), and getting some stuff done that I’m extremely excited about and proud of and would love to tell you about!

So what is it!?

If you’ve been following this blog, you might know that:

• I started a Non-Profit Foundation, called The Cancerful Foundation
• In partnership with the Foundation, we are making a movie that cures cancer.
• That’s right, we are making a movie that cures cancer.
• The movie is also a musical.
• Yes, I wrote a lot of the songs.  George Gershwin wrote some of them too.  (And some we wrote together.  We have the same brain cancer, so it’s a fun partnership.)

Making this Movie-That-Cures-Cancer is the most exciting and wonderful and fulfilling thing I have ever done, or ever will do, in my life.  I believe in this project so deeply and profoundly that honestly my biggest concern with all this brain cancer / head leaking nonsense is just being able to have enough time & energy to make sure that this thing happens.  As soon as possible.  Because it needs to happen.  As soon as possible.  Cancerful people need it to happen.  It will cure them.  It will cure all of us.  It will change the way we think, and talk, (and sing!) about cancer.

And I am as sure of these things as I have ever been about anything in my life.

And the good news is,  we are well underway!  This thing is happening, and I will not be slowed down.  The movie is written, and it is wonderful.   The Foundation is running, and it is already starting to cure people.

And just in the last month, despite all the hospital trips and brain surgeries, myself and my wonderful Cancerful partners have made tons of progress on some key elements that will help us make this movie, and all of my cancer-curing dreams, come true.

You see, when you’re running a Cancerful Foundation, and making a movie that cures cancer, there are 2 primary goals that you need to achieve:

1) Getting a whole bunch of money

2) Getting a whole bunch of people to say “yes.”

And to help us achieve these goals, we’re putting together a beautiful pitch package that will explain the movie, and the Foundation, and our cancer-curing mission:  a package that we intend to send out to pretty much every single human being in the entire world, to tell them what we are doing, and to ask them if they would like to help us out.

This package includes a short film that we shot the morning of my brain surgery, as I jogged to the hospital.  It is going to be awesome.  We are editing it right now, and I can not WAIT to show it to you.  It’s funny, and inspiring (it actually made me laugh, and cry), and it’s gonna help us get a whole bunch of money, and a whole bunch of yeses.

When the short film is ready (in about a week or two), we will post it here, and I will ask you to forward it to everyone you have ever met in your entire life.  (And ideally even people you haven’t met 🙂

And the other thing we have been working on, which is equally awesome, and which I am EXTREMELY PROUD TO BE ABLE TO SHOW YOU RIGHT NOW!  is our brand new website for The Cancerful Foundation!

Cancerful logo

Click the pic to see our Cancerful new website!

This website is the home for all things Cancerful.  It is the hub for the movie, it is where all the music and the videos will live, and it is where we will keep you posted on the production as the movie cameras get closer to rolling!

And for now, this website is also (and this part is very important!) the place where — starting right now — people can make donations to the Cancerful Foundation to help us make our movie and cure the Cancerful!

People just like you!

And even people unlike you!   Ideally, every kind of person there is– they can all donate!  And they will!  And we’ll be off to the cancer-curing races!

So please check our awesome new website.   We already have some music from the movie on there, and there’s even a sneak-preview of the film we shot of me running to the hospital!

Just as important, you’ll find lots of information on the movie itself, as well as a bunch of other cancer-curing projects that we are already working on.  One that I’m particularly excited about, that we’re going to get up & running really soon (just need to raise a little bit of money first!) is The Cancer Card.  We’re making it a real thing.  A real card, that people with cancer can really play, to help them cure their day.

Ahhhh I’m so proud and excited!!!  So check it all out!!!  And if anything on there gets you feeling even slightly inspired, please click the “DONATE” button up top– you can make a donation right then and there, right now, and that money will go straight to helping us cure cancer, straight away!  (And since we are an officially IRS-registered non-profit charity, all donations to the Cancerful Foundation are tax-deductible!)

So THAT is what I’ve been working on.  In addition to sitting on the couch.  And digging myself out of a collapsed mine shaft and trying to get cerebral spinal fluid to stop flowing out of a hole in the side of my head.

And that’s why, today, despite my slightly achey-drippy head, I am a very happy man.

I am alive, and I am working on things that have the potential to help, and inspire, and cure, a lot of people.

And that’s pretty exciting.  It feels pretty great.

In truth, it makes the headache and headleak seem pretty insignificant.

I think now I’ve earned the right to go lay down on the couch. 😉

Thanks for reading.

 

A Very Uncommon Cold: I Sprung A Leak!

So, a common thing you can expect, when you have a common head cold, is clear liquid dripping out of your face.  Usually your nose.  When you’ve got the Uncommon Cold™, however (as I do), you might be surprised to find yourself with similarly clear (but slightly less viscous) liquid dripping (nay, running) out of the side of your head.  As in, your temple.  From which things normally do not drip.  Or run.

This is what I found happening to me two days ago.  So, to review:

Side effects from The Uncommon Cold may include:
• Curing Brain Cancer.
• The Most Excruciating Headache Of Your Life (TMEHOYL).
• Leaky, running temple.  (LRT)

Before I freak you out (no, it’s OK to be freaked out.  This was a weird one.) let me pre-assure you that this ends well.  I’m OK today.  The deluge has been stopped.  So here’s what happened:

Earlier in the week, TMEHOYL had been slowed down quite a bit.  I was on pain meds and steroids (a common post-craniotomy prescription, to keep swelling down), which seemed to be controlling the pain well enough that it was tolerable.

Then, mid-week, when I was prescribed to reduce the dose of steroids per day (also normal), the headache came back.  Big Time.  And it came with some vomiting (also normal when you have swelling / inflammation in the brain).  So, on Thursday, I vomited.  Pretty hard, in fact.  Hard enough, in fact, that as I was barfing I noticed something running down the side of my head, and dripping onto the floor.

We all know how much pressure a good vomit can put on your skull, and it turns out that in my case, said vomit (followed by several more throughout the day) actually caused enough pressure to spring a fucking leak in my head, right in the middle of the incision from my brain surgery.

But what was leaking out?  Oh, just CSF.  That’s Cerebral Spinal Fluid, between me and you.  That’s the stuff that your brain floats in, inside your skull.  Brain juice!  The good stuff!  And man did I have a full-on piss of it coming out of the side of my head for a bit.  I actually soaked through a pillow or two when I was sleeping later that night.  A pillow full of brain juice– how cool is that?  (If you define “cool” as “things that pretty much never happen,” it was pretty damn cool.)

But how could this happen??  It’s actually pretty logical, and not that big of a deal in the context, and it does happen.  You see, I’ve had four brain surgeries.  And (this time) I mention this not to brag, but to point out that once you’ve had your head cut open (or any other part of your body, for that matter) a whole bunch of times, it gets a little slower to heal.  The bones on that side of my head have been cut enough times that they just hadn’t fully healed back together.  So when I put 800 megabarftons of pressure into my skull, it caused some CSF to find a tiny hole in my skull, and then my muscle, and then the stitches in my skin that still had not completely healed together.

Hence the leak.

So yesterday, I was speaking with my doctors on the phone, and while the Brain Leak was slowing down, we thought it’d be best to have a good look at it before the weekend (“Duh,” you say.  Well yeah smarty-pants, I’m telling you that’s what we wanted to do, so shut up with your duhs!)

So Friday afternoon I took myself to the ER, to get my leak looked at.  (The ER being the best way to see a neuro-surgeon quickly, without an appointment.)

It was odd going from the pomp-and-circumstance of jogging to the hospital for brain surgery with a full professional film crew, to just running myself to the ER for a head-leak, but I like getting my head fixes.  And no, this time I didn’t actually run.  Despite all these holes in my head, I am not an imbecile.

So the docs checked me out, I gave them a little drip-demonstration by forcing some pressure in my head, and the diagnosis was this:

You have a hole in your head.  A highly uncommon, but eminently curable, hole.  In the side of your head.

So they sewed up the hole!  This time, to be safe, they used some nice industrial-gauge steel cable.

(I’m kidding.  They used sailing rope.  Kidding again.  They used stitches.  But the good ones.)

And since then, no more leaky Chad-face!  Here’s what my temple looks like right now, all nice and tight…

head hole

 

Nuthin’ gettin’ outta there!  (Although I haven’t actually sneezed yet, so you never know…)

Other than this hilarious and (only slightly) disconcerting episode, I am feeling a lot better, thank you.  Not quite the holy-shit-you-just-had-brain-surgery-two-days-ago-and-you’re-pulling-abandoned-babies-from-a-raging-river-Chad that I was last year after surgery (I didn’t really do that, but I got a LOT of “I can’t believe you just had brain surgery!”s), but I am doing well.  The headache is under control again, and the barfing was only that one day.

I’m recovering.  And I am very happy to (still) be here!

And not leaking anymore.

I Ran to Brain Surgery #4, And All I Got Was The Worst Headache Of My Life

Sorry for the delay in updating (you’re about to see why), so I’ll start with the results:

• The surgery went PERFECTLY!  The visible tumor mass we saw on my MRI a month ago had not grown much at all, and it was eminently accessible and removable.  So my eminent surgeon and good friend Chirag Patil, MD, accessed it and removed the shit out of it.

• Post-Op MRI showed complete resection, and no surprises, of the good or bad kind.  It was run-of-the-mill as expected.  The weird stuff only started later.  (I will get to this in a bit.  Don’t worry.  I’m fine.  Ish.)

• I got the clinical trial (the Uncommon Cold), which is hopefully already doing something uncommonly awesome.  It is important to understand (and accept) that we will never really know for sure if it does anything.  But hopefuly it will.  We’ll only know for sure once 1,000 people have gotten it, and have all shown serious positive results.  This is what clinical trials are for.  I’m very happy (and lucky) to be a part of this one.  Not only for contributing to my health (which is vaguely important to me), but also to the success of future patients with glioblastoma.

SO HERE’S WHAT HAPPENED, LAST THURSDAY!

I had brain surgery.  My fourth.  No big deal.  I also ran there again (and filmed it!), but that’s a whole other story, which I will post about later today.

So I had brain surgery, number 4, and then I woke up around 3PM, in the O.R.  Feeling not bad at all.  Pretty good actually.  Happy, as usual, to be alive.  (And I am decidedly not faking that.)

Then I dozed off a couple of times.  Various beautiful friends popped in and said hello during moments of eye-openness.

Then I dozed more.  Then I woke up, around 7PM, withThe Most Excruciating Headache Of My Entire Life (TMEHOMEL), or even conceive of to curse upon your most wicked and wretchedly deserving enemy.  (Hopefully not just the dick at 7-11 who didn’t say thanks when you held the door for him, because that would be mean.)

This headache was BAD.  And I’ve had headaches:
• I had a brain tumor the size of an orange.  Or a small mango, depending on your fruit preference.  THAT is a headache.
• I ran face-first into a tree in the middle of the woods a couple weeks ago (I didn’t fall, but there was a sound.  And it fucking hurt.  But it was mostly funny.  And no it was not because I have brain cancer, I was just looking at something, not that tree.)
• I’ve drank like an (insert non-Irish racist alcoholic person word here, because hey– everybody gets it, give them a break).  Those are headaches.  You know what those feel like.

This was much worse than any of those headaches.

Much, much worse.

And it continued for the next 15 hours.

And that really sucked.

Now, we don’t really know the reason for this headache.  I mean yeah, I did just have my skull physically sawed open, so that would seem like a clue, but I’ve done that three other times and it never felt like this.  Never anything like this.

Now, before I scare you off of future brain surgeries you might be considering, let’s remember something important: I AM THE FIRST HUMAN BEING TO EVER GET A GENETICALLY MODIFIED COLD VIRUS INJECTED DIRECTLY INTO HIS BRAIN.

So that’s probably what it was.  But we don’t know, and we’ll never know for sure (until, at least, the same thing happens to a thousand people).  And this Ultimate Headache Of Death could actually be a good sign: it could mean the virus is doing what it’s supposed to, which is to get my immune system all pissed off & ready to eat stuff.  Like brain cancer.

It could be doing that right now, in fact.  Because the headache is still going.  Six days later.  Ouch x 1,000.  I have been able to manage it with steroids & pain killers though, so I am doing OK at the moment.  And it’s worth it.)

Is it really worth it?   You bet your hurty brain it is.  Because it helps people down the road from me, and maybe it helps me too.  And The Most Excruciating Headache Of A Lifetime (TMEHOALT) is worth it if you’re dealing with what I’m dealing with.

Because there’s not much else out there to deal with what I’m dealing with.

So I’m dealin’!

My Brainbow!

End note: on my way to brain surgery, that very same day, I did something I’m so terrible excited about and can’t wait to tell you that I’m gonna take a breath (and maybe a Tylenol) and write about it in a separate post, to follow.

 

The Uncommon Cold

Some more info on my upcoming Fourth Grand Opening:

I mentioned a few weeks ago when we discovered that my cancer is back that I might be able to get into a brand new clinical trial for GBM.  It took some hard work on the part of my doctors and the staff at Cedars Sinai to get everything ready in time for my surgery, but the good news is, it’s happening!

I will, definitely, be getting this trial therapy.  I am already signed up, I’ve passed all my physicals, and since this is a Phase 1 trial there are no placebos.  So I will be the first human patient with brain cancer to ever get this stuff.   So that is great.  I’m going to get a genetically modified cold virus injected into my head, to see if it can help cure my brain cancer.

Now, nobody has ever gotten this stuff before, so it also might turn me into a zombie.  But my doctors doubt it.  We just don’t know yet.  That’s why it’s called a trial.

The trial has a really boring name with lots of letters and numbers that don’t make any sense, so for our purposes here, we’re going to call it “THE UNCOMMON COLD.”  Because it involves the cold virus.  Get it?  That’s a joke.  And here’s another one:

SIDE EFFECTS OF “THE UNCOMMON COLD” MAY INCLUDE:
• Sneezing
• Runny nose
• Curing brain cancer

Actually, since I’m the first patient ever in this trial (Patient #1!  Or “Patient Zero,” in the event that it turns me into a zombie), we don’t really know what the side effects are going to be.  But previous research shows that it probably won’t do much at all, other than possibly help my brain cancer go away.  Maybe temporarily, and maybe for good.  We will see!

Here are some of the details, as far as I understand them:
(I’m not a brain surgeon, I just have lots of brain surgeries performed on me…)
– During my brain surgery, doctors will use a wee tiny needle to inject a wee tiny bit of genetically modified Adenovirus into my brain, right onto the site of where they just removed the cancerous tumor cells that have been growing back.
– Adenovirus is the virus that causes the common cold.  But this isn’t your run-of-the-mill Adenovirus.  This virus has been genetically modified to (in theory) help my immune system fight the cancer cells in my brain.  I say “in theory” because, again, this is a trial. We’ll see if it works or not.
– What this modified virus is designed to do is release proteins that will signal my immune system to come in and fight whatever bad stuff happens to be there.  In this case, the bad stuff is brain cancer.
See, normally your brain doesn’t have much immune activity going on, since your brain doesn’t normally get infections.  It’s sealed up in a nice clean bag, so it usually doesn’t cause much trouble.  This becomes a problem when you get brain cancer, which in my case started INSIDE my brain, since it’s made out of brain cells.   So by introducing this virus and its super-protein-signal-producing capabilities, we’re kind of tricking my immune system to visit the Cancerful area of my brain, and the idea is that once it arrives it will notice the brain cancer, and start munching away at it.  So that’s the idea.

BUT HERE’S THE REALLY COOL PART (or at least, another cool part):
– This Adenovirus is not only modified to produce extra signaling proteins, it is also modified to not duplicate.  So there’s no risk of me getting a really, really serious head cold.  (That was another bad cold joke, in case you missed it.)
– AND NOT ONLY THAT!  It is also modified to only produce its proteins when it is activated.  And the way we activate it is by me swallowing a pill!
– So they’ll inject the virus into my brain, and it will just sit there and not do anything.  And then, over the next few days, I’ll start taking these pills called “Veledimex” (if you had any doubt, at this point it is clear that we’re living in the future.)  Once the Veledimex hits my blood stream and gets into my brain, it will signal to the Adenovirus to start making its proteins!
– By taking more or less of these pills, we can actually control how much of the proteins the modified virus will make.
– This is some seriously futuristic shit.

Now, there is another new clinical trial starting up that involves SCORPION VENOM, but I won’t be getting that one, since I’m getting this one.  I can’t hog all the cool futuristic trials for myself.  Well I would if I could, but they won’t let me.  No, I’m kidding.  I’m very very happy with the Extremely Uncommon Head Cold (EUHC) that I am about to receive on Thursday.

What a Cancerful life!

 

My Fourth Grand Opening!

{NOTE: JUMP TO THE BOTTOM OF THIS POST IF YOU’RE ONLY INTERESTED IN THE TECHNICAL DETAILS OF MY UPCOMING BRAIN SURGERY, INCLUDING TIMES, CLINICAL TRIAL INFO, ETC., AND NOT IN THE FACT THAT I’M ABOUT TO DO SOMETHING NO HUMAN BEING HAS EVER DONE BEFORE.  BECAUSE IT’S ACTUALLY KIND OF STUPID.}

grand opening

This Thursday, early on the morning of June 18th, 2015, I am going to celebrate my FOURTH GRAND OPENING by doing something I have never done before!

It’s not brain surgery.

It’s not even running to brain surgery.

Well, it’s not JUST those two things.  Because I AM doing both of those things on Thursday morning.  But I’ve done both of those things before.

No, this time, because I am an absolute moron, I will not only be getting up at 5AM to go running, to the hospital, for brain surgery, but I will ALSO (with the help of some wonderful and talented and professional and dedicated friends who don’t have cancer-addled brains and actually know what they’re doing with their lives and somehow have not yet told me I’m a moron and should just stop)… I mean, WE will also… be shooting a film.   Of me.  Running.  To brain surgery.

And that’s something I’ve never done before!  (I don’t think anyone has done that before, actually.  And while that is totally not why I’m doing this, that is also kind of a reason to do something, isn’t it?)

Now why would I do this, you ask, beyond the fact that it’s hard to find something to do that somebody hasn’t already done before?  This is a good question.  It’s the same question I’ve been asking myself every few seconds since I conceived of this idea and convinced a bunch of people to invest their time and energy and creativity into helping me pull off such a ridiculous stunt.

Honestly, here’s why I’m doing it: because it is a ridiculous stunt.

I’m not normally one for ridiculous stunts– I tend to play it safe, even in cooking– but I’m smart enough to have realized that there’s nothing better for getting people’s attention in this annoyingly noisy modern world of ours than by executing ridiculous (or inspiring, or hilarious, or ill-conceived, or dangerous — you pick the adjective once the thing is over) stunts.

So I am doing this to get people’s attention.  (Not yours, I already have your attention.  So thank you for that.)

As you may have heard, I am making a movie that cures cancer.  And it’s (sort of) a musical.

Things are going really well with the movie — I’m working with some wonderful people on it every day, and it’s really beginning to take shape.  It’s going to happen.

But to make a movie (that’s sort of a musical) that cures cancer, I have learned that you need two very important things:

1) A bunch of people to say “yes.”

2) A bunch of money.

Now, I hate asking people to say yes, and I hate asking people for money even more.

But I believe very deeply in this Cancerful movie of mine, and so I am running to the hospital on Thursday– and making a super awesome little movie out of it– in the hopes that it will inspire people:  to say yes, and to write checks.

And then I don’t have to do any of the hard work. 😉

Now I’m sure me running to brain surgery and filming it and putting it on the Internet will also wind up inspiring a few other  people out there with brain cancer, and this does make me happy.  Because I have brain cancer, and when you have brain cancer and you see anybody doing anything other than drooling or dying, you tend to get a little excited.  But this is more of a secondary goal.

The goal is making a movie that cures cancer.

If there is a reason I have lived this long, it is to do that.

(It’s certainly not to see the Eagles win a Super Bowl, because that one appears as elusive as a cure for brain cancer.  But I do remain hopeful!)

So here I go…!

You’ll be hearing more from me after Thursday.  Unless I get hit by a bus.

*****************

HERE ARE ALL THE PERTINENT SURGERY DETAILS, FOR THOSE OF YOU WHO DON’T CARE ABOUT THE STUNTINESS ABOVE (AND YOU SHOULDN’T, UNLESS YOU’RE IN A POSITION TO SAY YES OR WRITE A CHECK, OR YOU JUST GOT BRAIN CANCER AND NEED PROOF THAT THERE IS MORE TO BRAIN CANCERFUL LIFE THAN DROOLING AND DYING.  BECAUSE THERE IS.  BUT ONLY IF YOU’RE AN IDIOT.)

SURGERY #4: “MY FOURTH GRAND OPENING!”

WHEN:  Thursday, June 18th.
– Nut gets cracked open at about 10AM, PST.  (That’s 1AM in Kuala Lumpur)
– 
I should be awake 4-6 hours later, say 4PM PST (That’s 7PM in Boca Raton)
– I will be spending 2 nights in the hospital, so I’ll probably be checking out on Saturday morning (that’s Sunday, in Hong Kong.)

IF YOU’D LIKE TO VISIT ME OR SAY HI OR SEND ME BASKETS OF PUPPIES DURING OR AFTER SURGERY:  I would absolutely love all of that.  I like making a party out of brain surgery.  But it will probably be difficult for me to communicate (especially during surgery), so my sister Jen is going to be the contact person starting Thursday.  If you don’t have her info but would like it, just give me a shout before Thursday and I’ll put you in touch.

WHERE:  Surgery will be at Cedars Sinai Medical Center, in Los Angeles.
You know, my favorite local brain surgery spot.

WHY:  Because I’ve got another little spot of brain cancer in my head, and the best way to get it out is to physically cut a hole in my skull and have a person remove it.

HOW:  How? I don’t know, I’m not a brain surgeon.  But I do know that the new tumor growth is pretty small, and it is in a  very safe and accessible spot (relatively speaking– this is the brain, of course, not my knee).  So we fully expect that the surgery will be quick and easy (again, relatively.  This is brain surgery.)  And we fully expect that I’ll wake up every bit the 65 year-old Romanian drag queen I am right now.  In other words, I’ll be fine.  Not just fine– SPECTACULAR!

And here’s the best part:  Aside from running to brain surgery and filming it, I will actually be doing A SECOND THING ON THURSDAY THAT NO HUMAN BEING HAS EVER DONE BEFORE!  But this one is just because I’m lucky, not because I am an attention-starved idiot and/or trying to cure cancer.   And here’s what it is: THE CLINICAL TRIAL!  I will definitely be getting the clinical trial.  But since this post is already getting long, I’m going to write about it separately.  Click here for more info on me getting a head cold, on purpose.

 

(If you read all this, thanks for your patience.  Even if I get hit by a bus on Thursday, feel free to say yes to making a movie that cures cancer.  And to writing a check to the Cancerful Foundation to help make it happen.  Don’t make me haunt you and ask for money from beyond the grave.)

 

What’s Cooler Than Having 3 Brain Surgeries?

QUESTION: What’s cooler than having three brain surgeries?

ANSWER: Having three brain surgeries, and not having brain cancer anymore.

Hmm– that’s not exactly what I have in mind.  (Pun very much intended.)

Let’s try again:

QUESTION: What’s cooler than having three brain surgeries?

ANSWER: Having FOUR brain surgeries!

There we go!  I’m gonna go with that one!

Why?  Because today I found out that I’ve got a reason to get my skull cracked open for a personal-best  (and Peacock family record) fourth time!  That’s right folks– BRAIN SURGERY NUMBER FOUR!

Nuthin' Beats It!

 

Mind you, I’m not just doing this to show off (well, at least not only to show off).  I’m doing it because, well, I need a haircut.  And I prefer to get my hair cut in Beverly Hills.  I’m fancy like that.

Actually, earlier today my mother (who happens to be out here visiting for a week) looked at me with a wry smile and a subtle level of consternation and said “So what are you going to do about that hair?”  She is right– my hair is kind of a mess at the moment– but when she said this, I laughed out loud and said “Mom… why don’t we wait and see if I have to have brain surgery first.”

Turns out… I do!  Need both of those things.  A haircut, and brain surgery.  Two birds, one stone.  Boom!

Joking aside (or at least mostly aside) here’s the gist:

– Had an MRI today.  Have felt really (really) good of late, so I didn’t expect anything unusual.  But “unusual” in the world of glioblastoma being a relative term, what I found out today is that my much ballyhooed Brain Chance is back!  Or, more back, as it were, since it’s clearly been hanging out for three years now, just popping up now and then to remind everyone (except for me, because I tend to be conscious of this fact) that I have brain cancer.  Well how d’ya like that!

– The new Mini Tumor Piece (MTP) has appeared since my last MRI, two months ago.  It’s about a centimeter or so in size, and is located in the same hole in my head where all of the action has taken place thus far.  This is a good thing, where it is.  As Doctor Who said (I’ll take the liberty of paraphrasing, since that isn’t how he spells his name either): “This is pretty much exactly what you’d hope for, if you were hoping for something like this to happen.”

– Any respectful brain surgeon (and I find most brain surgeons to be, among many other things, eminently respectful) would scold me for saying this, but the particular surgery required to remove this New Chancey Growth (NCG) is somewhat of a fastball down the middle.  Which is to say, “easy” to hit out of the park, if you’re a good brain surgeon and not using a baseball bat.  Why?? How?? Well, I’ve already got a nice hinged door in my skull right there for them to go in and take it out (Wild West style, with a gap at the bottom for stray dogs and tumbleweeds to roll through), and my surgeon is already quite familiar with this region in my right front temporal lobe, having had his magical porcelain fingers in there two times already in less than three years.

– So I’m not 100% sure I’m going to have brain surgery soon (I could, after all, get hit by a bus tomorrow, thereby beating brain cancer and rendering further treatments irrelevant to my ongoing going), but I’m totally probably gonna have brain surgery.  Relatively soon.  Which brings me to the next point:

– There’s a fancy new clinical trial that hasn’t even started yet that coincidentally (or not, since this could all be a sham, just a creative writing exercise on my part performed to cheat my sister out of a reasonably meager inheritance), I just might be able to get into.  And not only that… NOT ONLY THAT!  But, well, a couple of things:

– I could be Patient #1 in said clinical trial.  Which means, The First Guy Ever To Get This Fancy Ass New Treatment For a Henceforth Mostly Untreatable Disease. (TFGETGTFANTFAHMUD)  Well how do you like THAT!? **

**(I like it a lot.   I am almost incomprehesibly lucky to have this option, or even any of these options.  And this is one big reason why you’ll rarely hear me complaining about any of this stuff that fate has bestowed upon me and my noggin.  I have options (with an S!), and in the world of glioblastoma, options barely exist 20 years ago.  I am one Cancerfully lucky sunuvagun.)

– This particular clinical trial involves some shit that’s so rad and futuristic that it would knock your socks off if you weren’t already reading this post in bed while wearing flip flops.  (Why are you wearing flip flops in bed?)  So what is it, you ask, as you sheepishly remove your flip flops and put them on the side table?  What is this Bitchinly Futuristic New Trial (BFNT)?

– It’s giving my brain a cold.  Literally.  Now if you watched that 60 Minutes piece a few months back where they injected polio into some guy’s brain who has glioblastoma, you may be familiar with The Hot New Trend™ (THNT™) in cancer therapies, which is modifying viruses that usually do shitty things to people to instead do awesome things to people, by doing shitty things to their cancer instead of them.  That’s kind of what this is.  But I’ll explain a bit more:

– In this particular trial, the idea is to inject a modified COLD VIRUS (not as cool as polio, but a lot more down-home and cozy) directly into my brain piece, right smack in the area where the brain chance is chancing it up.  Unlike the polio virus treatment, which uses a modified virus to actually attack the cancer cells themselves, this jigged-up cold virus is instead designed to invoke your own immune response.  In other words, it puts some shit in your brain that makes your immune system say “Hey look, let’s get in there and take care of that shit!” and makes it fly in in full force to attack and remove anything and everything that isn’t Good Old Fashioned Useful Brains (GOFUBs).  Now I know, you’d think your immune system should already be saying this about the fucking brain cancer that’s in there, but this is where the science gets a little fuzzy and hey I’ve had a long day it’s not my job to write clinical trial abstracts, it’s just my job to have brain cancer and not die from it for a surprisingly long time.  And also write about all of this to make people (myself included) feel better about Cancer! in general.

– So to round up: I’ve got more brain cancer, and since the most obvious way to get brain cancer out of your head is to get in there and physically remove it, that’s exactly what we (myself and my magically Cancerful Team at Cedars) plan on doing.  Hence brain surgery #4.  And since the clinical-trial-injecting-cold-virus-into-your-brain thing requires that you already have an actual opening in your skull big enough to get a turkey baster through, a convenient time to do the injection would be during an already-in-progress brain surgery.  Hence Brain Surgery #4.

– Right now they working to figure out if we can actually make all of this happen at the same time, so I don’t know if or when it’s all exactly going to happen.  There’s lots of medical and scientific and bureaucratic finagling required to get the trial up and running, so we (and by “we” I mean not really me but mostly those aforementioned Cancer Magicians at Cedars) are currently figuring out if it’s possible to make it all happen quickly enough.  (In the world of glioblastoma, “quickly” is loosely defined as “with as much haste as you can possibly fucking muster, since this shit grows real fast.”)

– If we can’t get the trial stuff ready quickly enough, there’s a possibility that I’ll just drop by Cedars for a Run-Of-The-Mill Get-The-Cancer-Out Brain Surgery (ROTMGTCOBS) some time in the next two weeks, and then go back later when the trial is ready and have a fifth brain surgery shortly on the heels of the fourth, just to get that cold into my head, and maybe cure my cancer.

–  Wait, did I just say a FIFTH brain surgery?

– I did.

– What’s cooler than having four brain surgeries?

– Nothing.  Having four brain surgeries is cool enough, so let’s start there and see what happens.

– Brain Surgery #4 time & date is yet to be determined– I’ll keep you posted on here as soon I have more details.  (What a cliffhanger!)

– Speaking of cliffhangers, this Cancerful Movie and Cancerful Foundation I’ve been working very hard on are going really really well, and I have no intention of letting any of the myriad brain surgeries I have coming in the coming weeks slow me down even one bit.  Well maybe one bit, but not any more bits than that.  Preferably only a half a bit.

– Since I don’t want to appear overly cavalier about all of this (I’m only mostly cavalier, and that’s just because I’m an idiot) I will now admit that YES, this is all scary.  And yes, it’s hard.  It’s really hard, in fact.  But I end this day mostly and honestly relieved and excited and above all thankful that there are people and ideas out there that allow a person with a Super Terminal Whopper Of A Disease (STWOAD) not only to keep living, but to keep living well.  And the gratitude and utter amazement I feel for all of that keeps me going.  And keeps me wanting to keep on going.  Man, what a ride this is.

And it isn’t even close to being over.

Good night!  I will see you all in the morning.