So What Happens Now?

The original purpose of this blog was to keep everybody up to date and informed about my surgeries and treatments (voodoo and otherwise), but I’m afraid the length-density of my posts and all the crappy jokes have tended to bury the pertinent information.  Sorry about that.

So here, for clarification purposes, is what is happening right now, and what will continue (hopefully) to happen.  With bullets and boldface type!

  • I take 4 chemo pills 5 days out of each month to (hopefully) arrest the growth of whatever cancer is still in my brain.  The chemo is called Temodar.  It doesn’t make me barf.   (Except that one time last week when due to some remarkable coincidence I got food poisoning the day before I started my chemo.  Then it makes me barf.  Real bad.  Even worse than the food poisoning did.  Thanks Hamburger Hamlet XP!)
  • So it’s like I’m on the pill.  Except instead of birth control pills, I’m taking pills designed to prevent the undoing of my own birth.  Is it working?  Only chance knows.  (Most likely and terrifying scenario is it’ll work for awhile, until it doesn’t anymore.  Then we either find something new that works, or the chance wins.)
  • The chemo also can make me a bit tired and/or spaced out.  But really, it’s not the worst thing in the world to have a crappy week once a month. Hence me calling it “my period.”   (While I like this joke, I actually feel like it’s insulting to women who go through much worse than I do every month.  God bless you ladies, I feel for you.)
  • In addition to the chemo, I get a couple of shots in my armpit every month or two.  This is the clinical trial vaccine (I posted a video about it that gets into more detail).  This thing is really exciting.  It’s state of the art anti-chance medicine.  But…
  • I may or may not be getting a placebo instead of the real vaccine.  Thems the breaks.
  • I get an MRI every two months to see if the cancer is spreading or staying put.  Spreading = bad.  Staying put = good.  My next MRI is December 4th.   There will be one every 2 months after that.  Which means every 60 days.   Which means every 8 weeks.   (If I’ve asked you not to keep asking me when my next MRI is, I’m sorry– it’s just one thing that I try really really really hard not to be thinking and worrying about every single moment of every single day.  It’s like a weird trial date,  when what is on trial is whether you get to keep living or not.  Best not to worry about it since the outcome is not really under your control.)
  • Speaking of living though, I’m doing it and it’s going great!  Working again, enjoying my days, and trying not to just have cancer on the brain 24 hours a day.  (Which can be exceedingly difficult though, seeing as I literally have actual cancer on my actual brain.)
  • But hopefully not for long!

On that final note, this is how weird my life has become:  the best news I heard last week was that a guy died of heart failure.

How could that possibly be good news?

I’ll tell you!  You see, said guy was diagnosed with brain cancer some time back in the early 1980s.  Which no matter how you bend it, was at least 30 years ago.  30 years ago!?  He died of heart failure at 70 something years old?!  Hooray!

Dying of heart failure sounds like pretty much the best thing in the world to me right now.  I’m totally goddamn sure that my heart will last at least another 30 years, so if that’s what takes me out I will be a happy, happy man.

Gotta run, I’m going to the flower district.  This time I’ll keep my phone in my pants pocket.

Every New Post Means I’m Not Dead Yet!

Unless I hired a ghost writer, of course.  Or became a Ghost-Writer (which is not as cool as being a Ghost Rider, but since I have a motorcycle I could potentially become both in the afterlife).  Or unless I turned my laptop over to Dutch the Dog and instructed her to continue this blog in my honor (after teaching her the difference between “your” and “you’re” and counseling her with one last wagging finger not to use the word “literally” unless you really mean it…  literally).

Oh but I digress, I’m not dead, I’m right here typing and drinking a Leffe and smoking an e-cigar while listening to a decidedly alive creature scurry around inside the walls and ceiling of my house and debating whether his shockingly presumptuous intrusion means he deserves to be terminated, but feeling like the answer is probably no, even though I’d really rather him go the way of those car-alarming mockingbirds who after a few well-aimed slingshotted palm nuts whizzing by their beaks decided to move a few blocks over into Koreatown.  Good riddance to all these attention-starved nocturnal creatures, I say!  The sleeping is much better without them.

Speaking of which, there’s been a lot less sleeping of late, or more accurately a lot less sleepiness– a fact which comes with a level of relief and satisfaction that I can’t even begin to express.  The Velvet Fog has lifted, perhaps for good, and I am very happy to report that I am left sitting here feeling pretty much like a Normal Human Being again!  I dare say I even feel like a Normal Human Being Who Hasn’t Been Through Two Brain Surgeries And A Serious Dance With A Serious Brain Chance!

But I am a human being who has been through those things, and who continues to dance with such a Chance; the point is just that I feel pretty normal again.  And feeling pretty normal again feels pretty fucking amazing.

Sure I’m left with a weird scar under my swiftly regrowing hair (take that, Ben Kingsley-like maternal Grandfather!) and a terrific new capacity for anxiety that wakes me more often at night than those mockingbirds ever did, but all in all I’m doing pretty damn well.  I’m alive and I’m not blind and I’m not paralyzed (and I’m not dead), and I can run 5 miles again without missing a step, and when I’m not utterly terrified or paralyzed with worry I’m pretty damn happy to be around and feeling good again.  Which I can happily and honestly report is more than half the time.  So that’s good.  That’s great, in fact.  When you add it all up, that’s not a bad deal at all.

In fact it’s a great deal!  It’s a great, big deal that I’m still here, that I get to live my life again as I was before– which is to say, fully.  And pardon me if it seems like I’m gloating, but I find that it’s essential and helpful to remind myself that these facts are more important (and more worthy of spending thought-time on) than the ominous and ever-present ticking Chance inside my skull.  Let the Chance think about itself– I’d rather the rest of my brain concentrate on Living.

And speaking of living, and life, today mine just changed completely.  And for the better, I’m happy to report.  Thanks to some very wonderful people who have given me a very wonderful totally different kind of Chance, I’m writing a movie.  A movie about Terry Fox.  A movie about cancer.  And most importantly a movie about Life.  That may sound pretentious, but it doesn’t feel so pretentious when that word — Life — is pretty much all you’re thinking about 24 hours a day, 7 days a week.

Miraculously, I’ve been given the chance to turn all that thinking into something positive, and something potentially wonderful.  Something that very well might wind up saving people’s lives.  Something that very possibly could wind up saving my own.  Literally.

For this, I go to sleep on November 9th, 2012 (Happy Birthday my beautiful sister Jen!) a happy man, happy to be alive, and running, and thinking.

I’ve got to get some rest, I’m training for a marathon.

More on this to come.

Terry Fox - the Marathon of Hope