So when do you start treatment?

I’m starting chemo / radiation treatment on Monday,  June 4th, at 4:15 pm.

Well, technically I start Sunday night right before I go to bed, when I’m supposed to take a pill.

This pill is actually the chemo– it’s not the scary hellish treatment that most people think of when they hear the word “chemo,” where I’m hooked up to a machine that sucks out my life force like the Skeksis in The Dark Crystal.  (Click on that link in case you want to get freaked out– that movie is so freaking awesomely creepy.)

The drug itself is called Temodar (Temozolomide, or Temodal if you’re from Hong Kong), and my doctors believe that I’ll tolerate it really well, without many (if any) side effects.  I’m crossing my fingers that this is the case, unless those side effects include growing a plume of peacock feathers out of my coccyx, in which case bring it on.

So this is what they call the “Standard Treatment”– it’s pretty much what every GBM patient does after they have their brain surgery (GBM is the cool in-the-know term for glioblastoma multiforme, which is what I have.

The idea behind this chemotherapy / radiation combo buster treatment is to hit the remaining cancer cells in your brain (because there are always going to be some cancer cells remaining, no matter how ninja-like your surgeon is, and I’ve had two high level katana ninjas) as hard as possible.  In other words, you do your surgery(s) to physically remove as much of the tumor as possible, then you blast the remaining cancer with radiation to weaken it, and simultaneously hit it with the chemo to try to kill it off.

So the Standard GBM Treatment Regimen consists of the following:

– Temodar chemo pills, once a day.
– 5 minutes of radiation, 5 days a week
– A vigorous regimen of jogs around Hancock Park and swims in the pool

This goes on for  6 weeks, so from now until sometime in the middle of July.

Once I’m done with that, I stop doing radiation forever.  Then I shift over to a regimen where I take the chemo pills only a few days out of each month.

More on what happens down the road a bit later.

Did You Go to Hong Kong Just to get Brain Surgery?

I’m not sure where this rumor started, although it may be related to the fact that there was an article in the New York Times on medical tourism right around the time all of this was happening.

But no, I didn’t go to Hong Kong to get brain surgery.  I went there to see a very good friend of mine, and to visit a blow up doll factory (more on this later).

In fact, I had no idea I needed brain surgery until I saw this:

This photo was taken with my phone, at the exact moment I discovered I had a brain tumor.

(Click on the picture to see a super high res version.  (It might take a minute to load, but it’s really pretty cool.  The tumor is that dark spot with the white circle around it.)

What you’re seeing is a partial MRI scan of my brain, starting at the front of my skull (the top left image) and proceeding backward to about the middle of my head.

“Wait,” you say, “where and when did you get the MRI?”

Here’s the story:  after I got to Hong Kong, the headache wasn’t going away, and it actually started to get a little worse.  I knew I had to start doing something about it, and the first step was getting an MRI of my brainio, which according to my doctor friend would show me if there was anything seriously wrong.

So I booked myself an appointment for a scan at a hospital waaaaay up on a hill in Hong Kong.  (That city is insane, btw.  How they have the confidence that these 40 story skyscrapers they’re propping up on a 79 degree incline are not going to fall over is beyond me.  I mean– it’s not brain surgery, but it’s impressive engineering.)

Anyhoo, so I get the MRI, and I’m at the counter paying for it ($700, which is quite a deal compared to the 8 grand I would later find out it costs at Cedars Sinai) when I decide to poke my head back into the lab to see if I can see anything on the computer screen that shows the insides of my brains.  As I look through the door, a technician is hanging up a film that looks like it’s got brains on it.

I move in closer, look at the film, and the first thing I notice is my name on the bottom right.  The second thing I notice is that weird glowing ball of darkness you can see on the last two rows of images.  I point to it.

“What’s that?” I ask, knowing it was a brain tumor.
“I no a docta!” says the technician.

Translation:  “It’s a fucking brain tumor, pal, but I’m not gonna be the one to tell you that.”

It was actually really nice that no one had to tell me that, that I never had to have that conversation with a somber-faced doctor who with his best breaking-terrible-news-face says “You have a brain tumor.”

I saw it myself.  Plain as day.  And to be honest, more than anything it was a relief to finally figure it out, to realize THAT THING is what’s been causing the freaking month-long headache.

So what do I do now?  (So what did I do then?)

Well, I went to get something to eat.  (I wasn’t allowed to have any food or drink since the night before, so you can understand this reaction.)

By the time I got back to the lab to pick up the MRI films and DVD (they put a digital copy of the images on a disc for you which you can look at in 3D on your computer — it’s pretty awesome) the phone was ringing.  It was Dr. Chang, the neurologist who had referred me to this lab (not to be confused with Doctor Chan, the Man Who Would Operate On My Brain–old Jonny Slow Hands).  Dr. Chang knew I was supposed to fly home to LA the next day, so he had called the clinic hoping to be able to speak with me.

They hand me the phone.

ME: “Hello?”
CHANG: “Char-less?”
ME: “Yessss?”
CHANG: “Bro, do NOT get on that fucking plane tomorrow night.”
ME:  “Why not?”
CHANG:  “Cuz your brain could explode into a thousand pieces, causing you to die instantly. You’re lucky that didn’t happen to you on the way over here actually.”
ME:  “Uh Oh.”

(note: This conversation has been fictionalized for dramatic effect.  Although to be honest, the actual conversation was probably far more dramatic than I have rendered it here.  Anyway he definitely did not call me “Bro,” but he did warn me that I could / could have died instantly from flying at high altitude with the tumor in my head.)

So the crux of all of this was that I now knew that a) I had a brain tumor, and b) it clearly needed to come out.

So that is why I had brain surgery in Hong Kong.

So How Did You Know You Had a Brain Tumor?

This is a question I’ve been asked a lot, mainly by people who have this worried look on their face like they’ve been suspecting for years that something was terribly wrong and that they themselves might have a brain tumor.

Friends, I’m happy to tell you this: chances are you probably don’t have a brain tumor.  (Caveat: If you’ve had a headache for more than four weeks, I’d recommend getting an MRI just to be sure.)

That’s how it all started in fact.  I’m no stranger to headaches (from boozin’, getting my head too hot from running up mountains when it’s 100 degrees out, normal things like that).  But this headache was different.  It wasn’t all that painful, it was just… not going away.  First for a week, then two weeks, then holy-shit-it’s-April-why-do-I-still-have-this-stupid-fucking-headache?

Every morning I’d wake up and shake my skull a bit to check things out, and it was always there.  It wasn’t getting worse, but it wasn’t getting better.  Eventually I stopped taking Advil, because I didn’t want to be hiding anything or ignoring anything– I wanted to know if it was still there.  And it was.  For four weeks.

That and the weird dizzy/deja-vous spells.  Those were trippy.  One time when I was cooking, one time when I was jogging, one time when I was just talking with a friend, I’d suddenly get this intense surge of memories, kind of like deja-vous but different, as if someone was pressing their finger on the little spot in my brain that contained a particular memory.  I’d get this intense wave of sensations, like I could remember what it smelled like, felt like, sounded like to be in whatever particular situation I was remembering.  It was pretty amazing actually, one of the things I’m glad I got to experience.  It’s sortof like getting this weird inside tour of your brain and how it works: apparently what was causing it was the actual tumor growing and pressing on some of the memory spots in my brain.  But we’ll get to that.

So those were the symptoms.  Oh wait– I also passed out twice.  Only for a second or two each time, but I did!  I got the vapors and spilled to the floor, eyes rolled back like a Prohibition-era dame who just witnessed a bank heist.  Then I’d wake up nary a moment later thinking “Why am I lying on the floor with this spatula in my hand?”

It wasn’t all unpleasant though– one of the nice side effects (which would appear after the dizzy/pass out/deja-vous spells I mentioned above) was this intense refreshing sensation.  It felt as if I had just returned from a six year vacation.  The first time I passed out, when I woke up I felt like everything around me was brand new, like I was in a foreign country, even though I was sitting on my own couch.  For someone who feels most alive when traveling foreign countries, it was really nice to feel this way.  And that sensation continued for the whole month.  So aside from the dull headache, the having-a-brain-tumor-growing-inside-my-head thing was actually pretty neat in a lot of ways.

Anyway, neatness aside, it was pretty clear that there was something going on upstairs that was a little goofy (or at least more goofy than normal), and I of course wanted to get to the bottom of it.  As luck would have it, a friend of mine who is a doctor (in French Canadia) happened to be in town, and she was extremely helpful in pinning down what the cause of all of this might be.

The possibilities she came up with were the following:

  • Migraines (there’s actually this one rare type of migraine that has very similar symptoms to what I described above)
  • Epilepsy
  • Or the worst case scenario:  a BRAIN TUMOR.

 

I think from the beginning I kept assuming the worst, since it would be easier to accept if that happened to be the reality, but part of me thinks that I knew all along it was a tumor.  Something about it just felt like that, like there was this physical pressure inside my skull, like things just didn’t fit in there the way they were supposed to or the way they used to.

Which is exactly what wound up being the case.

But anyway, I didn’t know that until I went to Hong Kong.