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!
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):
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!