I don’t normally say–well, write–things succinctly, so I’m going to try with this post. Watch me go! Succinctly!
For the benefit of our audience who might not recognize that word, here it is…
in 11 different languages! Which one’s your fave?
Kurz und bündig
We actually do have an international audience here at the Brain Chancery. But clearly all I’m doing here is not being succinct, for the sake of a joke. That took me like 10 minutes to put that list together. Already off to a bad start. I could have just been short and to the point, and said “it means ‘short and to the point.”
OK let’s turn this thing around… succinctly! Go!
MY CANCER HAS SPREAD!
To my SPINE!!!
Wow, that was certainly short and to the point.
But it’s true.
And there’s more! (Information, not cancer.)
And most of the information I’m about to share with you (probably un-succinctly) will make you un-spit-out the chunk of food you may have just ejected because of my succinctly shocking announcement. (Sorry for that. But thank you for caring so much if you really did just spit something out. That’s really touching. And it’s not touching me, which is a plus.
(BTW, if you sharted a little bit when you read it, that means you really love me.
I love you too mom!!! 😉
OK so here’s the fine print on that whole “MY CANCER HAS SPREAD TO MY SPINE!” thing. Because it’s not as bad as it sounds. (Which sounds impossible, but you’re about to see why it’s true…)
THE #1 REASON WHY THIS ISN’T HORRIBLE — Plain and simple (and succinct): This is not horrible because the cancer has only spread to one place. Well, 2 places, but both are in the same place. Right next to each other. And both are very, very, VERY tiny.
Like, the size of a… you can’t even do the fruit size analogy with this one, because there are no fruits this tiny. (Not even the acai berry, which I don’t actually know how big it is, or how to say that word, but the internet says it’s the tiniest fruit there is.)
Why don’t I just show you how tiny this new cancer is. Now that would be succinct.
Here, look at this– those two spots that are marked by arrows, those are the spots.
See? They’re totally teeny (and tiny).
All that other white stuff you see? Don’t worry about any of that– that’s all normal stuff. I swear. Soft tissue, peanut butter, stuff like that. (I’m not kidding. Even though I just made a joke.
When I took the picture, Dr. Hu suggested we get one with my head in it, so you would have a better idea of what was going on where. He made me squat and move my face until I was in the same position. It was funny. I love my doctors.
For reference, my mouth & nose are on the left side of this picture. Lots of peanut butter over there. My spinal cord is smack in the middle (that handsome grey stripe that goes from top to bottom). And the two teeny tiny spots are located up toward the top of the spinal cord. They look like they’re buried in the middle, but they’re actually located on the very outside surface of the spinal cord. Which is also good. (They’re more easily exposed to whatever we want to expose them to. More on this below.)
WAIT, HOW/WHEN DID YOU FIND OUT ABOUT THIS? AND HOW DID THIS HAPPEN?
That’s a lot of questions for one question. I’ll try to be more succinct than you, even though I clearly wrote that long-winded question.
Answer: I had my usual brain MRI about a week ago. When I did, everything looked good (no new cancer in the brain at all, and the spot they removed during surgery #4 remains removed.)
However, there was this ONE tiny spot (teeny, actually) that we could see in the brain stem, up where the spinal cord meets the brain and says hello. When we saw this, Dr. Hu wasn’t terribly concerned, but he suggested that I get a full spine MRI to be cautious, to make sure that the cancer wasn’t suddenly all over the place.
So I did. And the results were, on the whole, really good. There is no cancer anywhere in my spine, from butt to brain, except for the spot we had seen a few days before that prompted the scan, and the tiny spot next to it.
And that’s a really good thing. Hence me not sounding overly worried about any of this. And that’s not me just magically “staying positive”– this actually is, logically, a pretty positive situation when you look at what could have happened. I could be dead, or my spine could be filled with huge tumors, in which case I would be soon. But neither of those things are true. I’m alive, and my spine is 99.9% clean!
BUT HOW DID THIS HAPPEN? WHY DID IT SPREAD?
Your spine (and mine) are part of the same system as the brain. They share lots of stuff, aside from thoughts. Including, importantly, the fact that they’re surrounded by and floating in Cerebral Spinal Fluid (CSF). That’s the stuff that’s been leaking out of my face– the stuff that I’m overly good at producing. Individual brain tumor cells can actually float around in CSF, and since I’ve had such a CSF circus (not to mention another brain surgery, which tends to stir the stuff up), Dr. Hu explained that it’s relatively normal that some of my GBM might go for a swim in my CSF and find a new home elsewhere in my BSS (Brainial Spine Situation– not a real thing, but I needed another acronym so I made one up).
So that’s probably how this happened.
Mine did too.
But not very successfully.
(Hmm, that’s a decent song lyric. Read it out loud. If you like it, maybe I’ll put it in the movie…)
I LIKE IT BUT I DON’T WANT TO SING! I’M WORRIED YOUR CANCER IS GOING TO SPREAD ALL OVER THE PLACE NOW!!!!!! IS IT!?!?!?!
Geez, calm down with the extravagant punctuation. The answer is “No.” With a simple period.
Dr. Hu also explained that any spreading of cancer (including on toast points) tends to make people freak out and think “holy shit, now it’s gonna go all over the place!) With glioblastoma, however, this is never really the case. It doesn’t get all fired up to take over your body– in my case one or two cells probably just fell off, took a slow float down the Cerebral Spinal Stream, landed on the shores of my spinal column, and set up a little tent.
SO WHAT ARE YOU GONNA DO?
Good question. One option would be to do nothing. To just wait, and see if it grows anymore. I’ve been through a lot, so this actually sounds like an attractive option to me. And I’ve still got a bunch of weird experimental treatments floating around in my body, so who knows– this new stuff could just disappear. But there’s also the chance that it wouldn’t.
With that in mind* (*brain pun) I’d rather be aggressive, as I have in the past.
It’s worked well for me to just keep doing everything I can possibly do, so I’m going to continue on that path.
I’m going to start treatment again.
WHAT KIND OF TREATMENT ARE WE TALKING ABOUT?
Amazingly, I have a couple of options. I say “amazingly” because with glioblastoma, there usually aren’t many (any) options. So this is another (very very) good thing. There are actually things I can do. I’ll explain only the options that I’m considering, mostly so I don’t have to explain the other ones (at least yet) which will save me from having to type more while I finish my cookies and milk.
Surgery: Usually this is your #1 go-to, but in this case it’s not an option. The spots are too small, plus I’m tired of having brain surgery for the moment, And we don’t even know with 100% certainty that those two spots are cancer. (The only way to find out is to take some of it out and test it–which means surgery, not gonna do that–or have a spinal tap and test the CSF around that part of the spine. And Dr. Hu said this test doesn’t even work very well. So I’m definitely not gonna do that. I’ve had enough spinal taps for 2015.
CyberKnife, aka Gamme Knife: This one I’ve kind of always wanted to do, but mostly because the names (not to mention the technology) are so cool. Technically it’s called “Stereotactic Radio Surgery” (not as cool, but at least it has an acronym– SRS). This is a surgical procedure where they use two beams of radiation to roast a specific spot inside your brain. It’s very different than the radiation I got before, which was a diffuse beam spread over a large area. With SRS, each beam doesn’t do anything on its own until it intersects with the other beam. So they set them to intersect right where your cancer is, and then… well, your cancer gets cooked. SRS actually has a really great success rate: somewhere around 85% of the time, within 1 year the cancer is gone and still has not come back. Which pretty much means it won’t. So that’s an awesome option to have.
The thing is, again, my spots are too teeny tiny to even do this treatment! Which is vaguely disappointing for the moment, but obviously a good thing. AND (this is the really good part) — if the cancer does start to grow, that means I will actually have ANOTHER option to turn to! And it’s an option that works really well. So that’s pretty wonderful. I’ve already got a backup if things get worse. That makes me even less worried about all of this.
Chemo: This is what I’m going to do, starting ASAP. Yes I know, everybody hates chemo, but again, I’m happy to have the option. I’m going to start taking Temodar again, which is the same exact stuff that I took at the beginning, for an entire year. One great thing is that this time, I’m going to take a much lower dosage, and I have so much less tumor in there now that this makes sense. It has a good chance of working. And here’s a big reason why we think so:
Temodar doesn’t always work for everybody, and sometimes it doesn’t work at all. But as Dr. Hu pointed out: for that year that I was taking Temodar, my cancer did not spread or grow at all. It only shrunk. So I’m in the (small) category of people for whom it’s reasonable to say that Temodar works. So I’m gonna do it. And the (much) lower dose– plus the fact that I know this stuff really well, having taken so much of it for so long– both mean that I’m totally comfortable to start on it again. It’s one pill before I go to bed, and that’s it. No wait– TWO PILLS! 1 Temodar, and 1 anti-nausea pill.
This time I will ALWAYS remember to take the anti-nausea pill before the chemo. So there won’t be any more barfing. And this time I’m taking like a tenth as much, so the mental side effects will definitely be a lot less severe. Plus I wrote a freaking movie while on the heavy dosage, so this time I should be totally fine. It’s not going to change my day to day life, or the way I feel and what I’m able to do, really at all. This is huge for me. And again I’m not just staying positive– these facts are all True Facts™! So believe it!
And that’s it for the treatment! Not bad at all. Which brings me to the next question…
HOW DO YOU FEEL?
This is a question I get asked a lot, but here I will actually answer it.
It’s an important question. Because to me, as long as I can maintain somewhat of a semblance of the life I had before all of this (or one that’s even more fun and rewarding and impactful), then I don’t mind the cancer thing so much– I am Cancerful, and I am happy. And I will not complain about any of it.
And I am, in fact, happy. I mean, this is all a huge pain in the ass, but I’m gonna make a movie that cures cancer! And it’s going to be great! I mean, did you hear the first song that we did!?? (It’s on this page in case you missed it, and if you’ve heard it already, listen to it again.)
To get back to the question– physically, I don’t feel different at all because of this new cancer. It’s a bit of a drag emotionally that this is happening (more on this below), but it is not affecting me at all physically. This is really important, and kind of part of the diagnosis/prognosis– because once this stuff starts pressing on the wrong nerves and making you paralyzed n’ stuff, that’s when you’re in trouble. But I’ve got nothing even close to that. Not so much as a numb toe. We’d never have known about this if it weren’t for the MRIs. And I’ll keep getting them so we can keep an eye on it (next one is in mid-November (if you’re keeping track, which I clearly am not because I don’t remember, and I didn’t even put it on my calendar).
As far as the headaches and the the leaky head situations:
Turns out these two things may have been related all along. As you’ve heard, since my surgery in June, I’ve had extra Cerebral Spinal Fluid coming out of my skull. And sometimes my face. Since then, we have started to figure out why. See– most of the scans I’ve had since June have shown that my ventricles, which are empty pockets (naturally occurring) in your brain where CSF is produced, look bigger than they were, and would normally be. This means that they’re swollen with extra CSF. So they’re either producing it too quickly, or I’m not absorbing it as quickly as I used to.
Either way there’s too much of it, and this is why it’s been flying out of my temple willy nilly.
But it’s also quite possible why I’ve been having headaches all along. Or at least, it could be one of the reasons. All of that extra pressure is bound to cause some pain, and I definitely have extra pressure in there (it was being monitored with that tube that was inside my skull for a week in Philadelphia). So this is a pretty obvious explanation for the headaches. I’m actually taking a new drug as of last week that is supposed to decrease the production of CSF. We’ll see if that does anything.
(So far, not so much. I’m still selling organic CSF shakes at the Farmer’s Market. I call it, un-ironically, “Brain Juice!”™ And I’m kind of making a killing– these Echo Park hipsters love weird shit, and they’ll pay top dollar for it. And nobody else is selling juice that literally came out of a human being’s brain.
BUT HOW DO YOU FEEL? EMOTIONALLY?
Mentally/Emotionally I feel, overall… not bad. I’m not gonna say good– I have to take a lot of pills, I’m still hazy & sleepy & I still get a lot of headaches. And my face still leaks occasionally. And I can’t really exercise because it exacerbates the leaking, so I feel lazy and out of shape, which decreases my energy level even more. Plus I’m a lot fatter than I was before my shitbox WonderSummer — although people keep telling me “you look great!” (Probably because I don’t look dead.)
And this is all really hard. But the biggest thing that I WAS worried about (for the last three years, in fact) is the moment when I’m so burdened by treatments / tumors / hospital visits, etc. that I can’t really live my life anymore. When I become a patient, not a person. I got a little taste of that this summer, and it sucked as much as I’d feared. But I made it through that, and I’m somewhat back on my feet now. And that’s making me very happy. I’m working again, I have purpose, we’re doing some really wonderful stuff at the Cancerful Foundation, and some of that stuff we are about to launch very very soon (you’ll hear about it right away on this blog, or out of my mouth, or on Ellen).
And all of that is pretty much making me feel like getting brain cancer was worth it.
THE CANCERFUL FOUNDATION!
This is the most important thing in the world to me now:
I was talking to a friend recently and realized that I’m not scared of dying because it would mean losing my life–I’ve had enough Wonderful Life for a few lifetimes, and I don’t want to be greedy about it. Any fear I might have about dying right now would pretty much only be because I’m so excited about and proud of all the things we’re doing (and planning to do) at the Cancerful Foundation. And it absolutely breaks my heart to think of disappearing before all–and I mean all– of that stuff has come to fruition. Because it’s all possible, and it’s all beautiful, and I know and believe down to my very core how much our work can help–really cure— people who have cancer. We’re doing things that nobody else is doing or has done. Things that people with cancer really need (like, to laugh about it occasionally. Or sing. Or be talked to honestly, from people who are in the same boat as they).
I believe it’s all going to happen, and I’m already getting to see some of it. We have already worked so hard and done so much and we’re so close! But we need to move fast! Every time something like this happens to me, it revs up my “Keep going! Get it done, Peacock!” engines.
Speaking of which, I can’t do it all by myself. So now it’s time for me to act the part of Head Cancerful (get it? My title is a pun! And I hate puns! But I clearly love brain cancer puns) and part of the part of being Head Cancerful means… asking you for money! You probably know this because I’ve probably asked you for money already.
But right now we’re in our first big fund raising push. We’re doing pretty well, but we still need to raise about $5,000 more by the end of this month (this month!) to hit our target for September and not have to stop doing all the awesome Cancerful things that we’re doing.
So if you can help, please click this link (or the logo above) and give what you can! And if “what you can” happens to be five grand, then you’re gonna be in the movie. Or at least your name will be. And you’ll definitely be at the premier. But this money isn’t for the movie yet– it’s to to fund our first big effort– THE CANCER CARD! (That’s it below– more details if you click the picture…)
We’re hoping to get them printed up ASAP so we can start handing them out– free of charge– to anybody who has cancer!
It’ll cure them when they first hold it in their hand, it’ll cure them when they show it to their friends and get a laugh, and it’ll cure them when it gets them into a National Park for free. And speaking of which, we’re planning a little Cancerful Road Trip to distribute the cards, and to take some Cancerful people to places that are so awesome and beautiful that they can cure cancer. (I’ve written about a few on this blog.)
I will keep you updated on the Cancer Cards as soon as we make it happen– so please help us get this curing mission going right away!
Thanks for reading. I hope I’ve answered enough questions that I can refer people to this post when they ask me how I’m doing. (So please let me know if there’s anything I missed or that you’re still curious about.)
And I hope I was successfully succinct.
So to sum up, succinctly:
Yes, I’ve got a little more cancer, but maybe I just got a little more motivation.