Success! What’s Next!

So around 4AM on Tuesday morning, I woke up, put my sneakers on, and jogged to the hospital.  For brain surgery.

run map

I’d meant to run here two years ago for my second surgery, but I didn’t because I didn’t want to sweat the fiducial markers off of my head.   (These things:)

Fiducials!  (for MRI-assisted brain surgery)

Fiducials! (for MRI-assisted brain surgery)

But not having run to brain surgery was one of the very few regrets of my Cancerful years, so for brain surgery #3, I had to do it.  And to be sure that I would,  I mentioned it (subconsciously, but probably also intentionally) on this blog the other day.  And then everybody started asking me about it.  So I had to do it.  And it was only 4 and a half miles.  So I did it.

 

morning-RUN

Running! To Brain Surgery!

The streets were nice and quiet, and I listened to Rhapsody in Blue on my headphones.  Which is long enough that it soundtracked me quite nicely through the first few miles, and it even had me stomping and jumping and triumphantly throwing my hands up in the air at certain points.  And this was on the way to brain surgery.  Which was pretty cool.  So thanks, George Gershwin, 77 years later, for getting a fellow 38 year-old Brain-Chancerful transplanted Los Angelino to our hospital on time.  You never made it out, but I already knew going in (partially thanks to y0u) that I would.

Once the song was over, around mile 2.5, I called my dad in Philly and talked to him while I ran.  He told me not get hit by a bus.  I thought that was pretty funny.  And I didn’t– I made it!  And the fiducial markers didn’t sweat off either.  So that was a pretty good start.

I went into surgery around 7:30AM, under the kind and sturdy hands of the same guy who operated on my last time.  “Silly Love Songs” was again (by request) playing in the O.R. while my head was sawed open.  (Last surgery, I’d joked with him that I’d had that song stuck in my head and asked if he could remove it while he was in there, and he totally surprised me by playing it right as they flipped me onto the operating table.  I laughed my ass off as I passed out.  So this time we did it again, for old time’s sake.)

Surgery went well!  He took out all the tumor he could see, in addition to a healthy (yes, healthy) margin of regular brain tissue around it, increasing the chance of getting out as many infiltrated tumor cells as possible.  So for a recurrent glioblastoma (which is very bad) this was about as good as you could hope for it to go.

AND, while I was under, my surgeon was able to (with my consent of course) use my brain as a test subject for a pretty nifty new light-assisted surgery method they’re working on.  Essentially, it will allow them to shine a light onto your brain and analyze the reflection to much better identify which cells are malignant and which ones aren’t, right there in the middle of surgery.  Kind of like a brain bar code scanner.  Which will help them take out all more bad stuff, and leave more good stuff behind.  Which is pretty awesome.

And then, I woke up!  And (for the third time in my life) everything worked!  Hands, eyes, toes, unmentionables, and most importantly… brain!  So you can see why for me this all of this has seemed (and continues to seem) to be more magic than curse, more good luck than bad luck.  Science!  I’m alive!

Yesterday morning, I woke up again!  And I turned on the World Cup match, just in time for my surgeon to pop in and with a relieved look on his face pull up a chair next to my bed so he could watch the game with me.  And so there we sat, surgeon and patient, laughing and discussing things like soccer and what he did with his hands inside my brains a few hours ago.  So that was pretty awesome.  We’re kind of like, pretty cool friends.  (At least I like to pretend we are.)  Sure, he saves lives and everything, but…  we have the same initials!

CP & CP

CP & CP ( I was still in my underpants at this point)

But the really neat part of our post-op World Cup conversation was when we nerded out on the nifty laser-light experimental stuff he was testing inside my brain.  The technology is really good, apparently– they know exactly where they’re going with it and how it’s going to work.   They just need to work out the kinks, gather the data, and develop the best protocol.  The biggest problem they have is securing enough funding to get it from the experimental stage to a point where (very feasibly, in only a few years) they can actually be using it during EVERY brain surgery.  It’s going to make their job a lot easier.  And it will save a lot of people’s lives.  But it will cost some money to get us there.

And this is where I looked at him, and put my hand on his shoulder, and said something like “Holy shit man, you know what?  I think I might be able to help you out with that.”   See, I don’t have any money myself (hence me having to physically run myself to brain surgery 😉 ) but the project I’m working on is geared not only toward helping people with cancer laugh and sing and cry and process being Cancerful, but it will also raise money for Cancerful things… exactly like this.

So I realize, sitting there in my hospital bed, one (and this is just one!) very specific way that I could actually help my pal CP–who saves people’s lives– save more people’s lives.

So I’m glad I had this third brain surgery.  And that I woke up.  And that I seem to be as clear-headed as I was last week, when I went in for that surprising (and yet not surprising) MRI.

My brain works enough that I can keep working.  And so I will.  (I am working right now, in my hospital bed, while a nurse simultaneously checks my blood pressure and temperature.)

I have been given two years with this disease.  And overall, those two years were pretty wonderful– and difficult, and pukey, and funny, and existentially terrifying, but always rewarding.  And that is already more luck that I deserved, certainly more than I earned.

And now I know I have a least a few months until anything happens inside my head again.   Maybe more than a few months.  Maybe some years. Or maybe I’ll have to do this again for my birthday in December.

Either way, I have some time.  And I think I need to make good use of it.

I smelled about 65 roses with my sister and my mom (on her birthday!) the day before my surgery.  That was a good use of Monday.

IMG_9829

That was a really great Monday, in fact.

IMG_9840

We smelled a lot of roses.

And Tuesday turned out pretty great too! I had brain surgery– and it worked!

IMG_9913

Wednesday, I rested.  And was totally dilaudid.  And some wonderful friends came and threw me a little pizza party in my room!  And we celebrated Brain Surgery Success Number Three!

And now it’s Thursday morning, and I’m lying in my hospital bed, typing this, getting ready to check out, and wondering what the rest of the day will bring.

IMG_9907

I bet it’s going to be pretty great.  It’s certainly going to be something.

And we all know what something is better than!

 

PS:  THE NITTY GRITTY, & FOR THOSE WHO STILL HAVE QUESTIONS:

– The post-op MRI showed complete resection of the new tumor mass.  There is nothing to be seen in there at the moment, other than regular brains.  This was the case two months ago however, so it could really come back at any time.  This is what I’m living with.  This is what I’ve been living with for two years now.  It’s OK though.  I’m OK with it.

– I will follow up with my docs next week, and we will discuss the next steps.  There are other clinical trials out there I might be lucky enough to trial out, and I can always go back on the same chemotherapy (Temodar) I was on before.   But I am not at this bridge yet, so I am not really worried about it, or if and when I will cross it, until I get there.  For now, it is Thursday.

– I probably won’t have another MRI for 8 weeks, since if anything is going to grow back we wouldn’t see it on a scan until after that long anyway.

– I do feel fine.  Pretty much as I did before the surgery.  Sure, the scar hurts quite a bit, but the pain killers are doing a nice job on that.  (Yes, I will be getting a safe ride home from the hospital.)

– If you don’t think it’s cool enough that I only ran TO my brain surgery, then maybe you need to find a better brain cancer blog to read.

– Despite me feeling pretty good, and being able to laugh about this, and everyone loving to tell me “you look great!”, I still need help.  And support.  And time with friends.  So any wind that anyone feels like sending under my sails to keep me moving forward as long as possible is greatly appreciated.  It’s gotten me this far, and I’d really like to go a lot further.

Thanks for reading this.

Can’t wait to go home and see Dutch!

2 YEARS + 3 BRAIN SURGERIES = I’M STILL HERE!

I had a plan for this post for a couple of weeks now.  I have had brain cancer for two years now– which is almost oxymoronic (and therefore a good thing), since “two years” and “brain cancer” don’t normally go hand in hand.

So I wanted to write something to people who have brain cancer, or are about to get it, to share some things that will probably surprise them, and will undoubtedly make them feel at least a little bit better.  (Which I know, because knowing these things would have made me feel a lot better, two years ago).

But then something happened this week that changed everything.  Something that might not make the Brain Cancerful feel so cancerful anymore.  But I’m going to write about it anyway.  I’m going to write about the good things, and the bad thing(s).

(NOTE: If you don’t have brain cancer, and just want to know what the hell is going on with me right now, bear with me for the first part.  If you do have brain cancer, and would rather not know what the hell is going on with me right now, bear with me for the second part.)

PART ONE:  THINGS YOU SHOULD KNOW IF YOU HAVE OR ARE GOING TO GET BRAIN CANCER (especially GLIOBLASTOMA!):

1) You can survive for two years.  (Maybe even longer!)  I have survived for 2.2 years, and while much of this time was spent feeling slightly shit-boxy, a lot of it was still as happy and fulfilling (actually, way more fulfilling) than most of the rest of my 38 years on Earth.  And I’m still alive!  And I feel pretty damn close to normal right now!  And sure, I may be having brain surgery again in a couple of days, but the point is:

2) This is not a death sentence.  What it is, is a “different life sentence”.  And that different life may very well be better than the one you had before.  Maybe it won’t, but maybe it will.  The good thing is– a lot of that is up to you.  Not all of it, but a lot of it.  People without brain cancer will tell you to “seize the day,” but what the hell do they know.  Get your brain cancer, and then you can tell THEM.  You’ll know what they mean even more than they do.  You’ll know when you’re wasting time and when you’re living.  In other words:

3) Stop and smell the fucking roses.  Constantly.  (Which is a tired metaphor, but is also extremely important  in both its literal and figurative senses.)  And if you don’t have rose bushes all over the place to smell like I do, do the things that make you think (and sometimes say, out loud) “Man, I love the world!  Man, the world is really fucking beautiful sometimes!”  Find that kind of stuff, and live it.  Constantly.  Because you’ll quickly learn that you’re living life WITH Brain Cancer every bit as well (and sometimes even better!) than you were without Brain Cancer.  And here’s another good way to achieve that:

4) Control the things you can control, and don’t worry about the rest.  Because the thing about the rest is… you can’t control it.  So instead of spending time worrying about that, spend your (quite valuable) time doing more of #3.  Trust me, you will be very glad that you did.

5) Yes, the treatment stuff can suck.  Losing things you’re used to having (mental and physical things) is tough.  But if you’re reading this, you are alive.  If you had brain cancer 100 years ago, you would not be alive right now.  Not even close.  You’d be very, very dead.  In fact, in a lot of places in this world, right now, you would already be dead.  You know this to be true.  So look at or think of something that makes you happy, right now, and then realize this:  YOU. ARE. ALIVE.  And so am I!  Hooray!

And if “just being alive” isn’t enough for you, then I’ve got one more thing to tell you (this is a good one):

6) You can do things that you’ve never done before— things you’ve never dreamed of doing before– AFTER getting brain cancer.  Good things.  Amazing things.  I ran a marathon, in the snow, by myself!  WITH brain cancer!  I’d never done anything like that before!  I still think marathons are weird and slightly insane (who the hell needs to run 26 miles?!) but I did one, with brain cancer.  And I never would have done it without brain cancer.  And that makes me happy.  And proud.  And even better (since I’m a writer)–  I have written things (this blog being one of them) SINCE getting brain cancer that I am more proud of than anything I’d written previously.  How about that!  A marathon, and a movie, and a blog– oh my!

So to reiterate:  THIS IS NOT A DEATH SENTENCE.  Not even close.  Even if you are going to die from it.   And a lot of us with the Brain Cancer will die from it!  But everybody has to die from something, right?  Speaking of which…

PART TWO: MY CANCER IS BACK, AND I AM HAVING BRAIN SURGERY #3 ON TUESDAY!

brain-surgery-3

But this does not mean I am going to die!  In point of fact, it means the exact opposite.  My cancer has reappeared, but I am having brain surgery on Tuesday to get it OUT of my head.  To make me live longer.  Hopefully a lot longer.  Who knows how long!  We will see!

So for those friends of mine who have sat through the cliché life-affirming self-help messages above, here are a dozen pertinent details, in short order:

1) I had an MRI on Tuesday, which showed new “cancer” growth, since the previous MRI 2 months ago.  Here is what it looks like (it’s that small white blob, bottom center):

MRI, June 17 2014

MRI, June 17 2014

2) I put “cancer” in quotes because there’s a chance– albeit a very slim one– that this new growth is not cancer.  It could be scar tissue.  Or silly putty.  Or chocolate pudding.  But it’s most likely cancer.  They will not know (they can not know for sure) until they crack open my head, take it out, and run tests on it.  So that’s what we’re going to do.

3) How cool is it that I’m having my THIRD brain surgery!?

4) This came completely out of nowhere.  It wasn’t there 2 months ago, and now it is.  This is actually very normal for GBM.  Maybe I will have this surgery, and it will disappear again for 2 more years.  And then it might pop up again.  So it goes.  These are the rules of this particular game.  I don’t mind it so much!  Kind of way more into paying attention to the “being alive” thing at the moment.

5) You might know that I’ve done radiation, chemo, and a trial vaccine.  This does not mean that any of those things failed– or even that I got the placebo vaccine.  All 3 of those things may have gotten me this far.  There is no way to know.  The important thing is that I HAVE gotten this far, and we will continue to do what we can to go further.  Right now, that means having brain surgery.  Number three!

6) I’m very very lucky to have this option.  The best way to remove cancer is to physically get your hands in there and take it the fuck out.  If I was old and fragile, or if the cancer was in an inaccessible place, this wouldn’t be an option.  But I’ve recovered really well from my previous two surgeries, and the cancer is in a relatively good spot, so my doctors pretty much said “Dude, if you’re up for it, DO IT.  If you CAN do it, do it.”  And I know that I can do it, so I’m totally gonna do it.  It’s gonna be a blast!

7) The new growth is in the empty cavity where the first tumor was.  It has not spread to 5 different places in my head (which would have been the worst case scenario, and which I am VERY relieved is NOT the case.)  It has also not burrowed very deep into the rest of my brain.  Yet.  Which is why it’s important and convenient and extremely useful to have surgery as soon as possible.  My surgeon is confident that he can get it out nice and easy– and apparently in half the time as my previous two 6-hour surgeries!

8) All this optimism isn’t to say they will get all the cancer out.  But maybe they will.  We’ll see.  Better to have one option than none, and right now I have a very good option.

9) Brain surgery #3 will happen Tuesday morning, June 24th, at 7:30AM.  My mom and my sister will be there.  And probably Dutch.  “Silly Love Songs” will be playing over the loudspeakers in the O.R.

10) Assuming all goes well (and I’m pretty sure it will), I will spend one night in the hospital and be home the next day.  If you would like to come and say hello while I am in the hospital, that would be grand.  I’ll probably be awake and in my room by Tuesday afternoon.  You bring the champagne, I’ll supply the morphine.

11) One of the main reasons I’m so excited about this brain surgery is that I really wanted to jog to the hospital for my last one, but didn’t get to.  This time I’m going to do it.  I’m going to run to the hospital for my brain surgery.  I may or may not also run home–  that part is up in the air right now.

12) The timing of this whole thing could NOT be better.  And I am NOT being sarcastic.  I just finished (just a few days before getting my MRI!) a movie… a musical… that cures cancer.  It’s done!  And I’m still not!

So I’m going to go have brain surgery on Tuesday, and after that I’m gonna do a whole bunch of awesome stuff.

Thanks to everybody for getting me this far.  It sounds insane, but it’s been really fun.

And there’s still a lot more to come.

So stay tuned!