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.)