“Even if I’m dead, if you’re seeing this, I had a happy ending” From the notebook of ‘Charles Peacock’ Six years ago an email appeared in the inboxes of many people who knew and loved Chad Peacock. The first line … Continue reading
With lasers! Question: what’s cooler than having five brain surgeries? If you’ve been following this blog, you probably have an idea where I’m going with that, and you might be thinking either “oh no…” or “SIX?!?” or some combination of … Continue reading
I’m starting to feel a little objectified. It’s like, no matter what I want to talk about, people are always trying to get me to show them my scans. As if they were the only attractive thing about me. I mean, they’re just scans. I’ve got SO much more to offer than my stupid MRI results!
(You know, these babies. I admit, they are pretty sweet…)
Because listen… what I really wanted to talk about today was the idea that all this renewed interest in cancer cell metabolism has a lot of potential, and is really probably neither a silver bullet nor the pseudo-science that some people–
Excuse me! Are you even reading what I’m writing? Or are your eyes still fixated on–
Hey! STOP STARING AT MY SCANS!!
OK. You back with me? Thank you. Don’t make me cover them up, please.
Sometimes I just want to use this blog to have a nice conversation, without everybody foaming at the mouth over “what happened with your MRI Chad!?” and “tell us about your MRI Chad!”
Can’t we do that? Can’t we just talk about what I want to talk about sometimes? And sometimes I don’t want to talk about MRI’s. Sometimes I need to take a break from thinking about–
“Hey Chad! Show us your scans!!“
Ugh. So much for that idea. Alright, FINE! Here you go…
I mean, I know how important MRI’s seem. How hard it can be to stop thinking about them.
Sometimes I find myself staring at them, even though they’re my scans.
But seriously, they’re just scans. They’re not that exciting. I mean, personally, there are a lot of things I find more interesting and exciting than the results of my latest MRI. For example, all the wonderful things we’re doing with the Cancerful Foundation! (We’re curing cancer, for godssakes! One moment at a time!)
But seriously, what’s the big whoop with the MRI’s!? Why is everybody always so worried about the MRI’s?
Oh wait I know! It’s because it’s the best way to figure out if I’m gonna die!
I realize this is putting it very bluntly, but it’s true! I mean– people don’t worry about MRI scans because it tells them if they can get a better deal on their car insurance. It’s about death!
Well, this makes more sense to me now. I guess if it’s about death, then that seems like a reasonable thing to be worried about.
But waaaaait a second… there’s still something that I don’t get:
Don’t we already know that I’m gonna die?
I’m not actually asking you that– I guess I’m just looking for confirmation. Because it was my understanding (and I was pretty good in science class) that I definitely am going to die. I’m pretty sure I’m right about that. Right?
Yeah! I’m totally gonna die! I mean, we all are!
(And I’m pretty sure I’m right about that too.)
So what the hell are we all worried about!? It’s like– The Most Foregone Of All Conclusions! I mean, we don’t know when it’s gonna happen, but it’s gonna happen at some p–
Wait a second.
That’s what this is all about. When.
It’s the when that we’re worried about.
OK good– I think I’m figuring this out:
So, everybody’s knows that we’re all going to die– me especially– we just don’t know when it’s going to happen. And we don’t like not knowing when, because we don’t like surprises when it comes to death. And this is where the scans come in! Because if we can see it coming, then…
Then we’ll be better prepared for it?
But if we’ve already agreed that we already know that it’s going to happen, then why aren’t we already prepared for it?
I know why– because we don’t want to think about it.
This frustrates me, because I don’t have a choice– I have to think about it. A lot. And not because I particularly love or am fascinated by the subject of death– I have to think about it simply because I have to spend so much of my time every day doing all sorts of things to avert it.
It’s kind of a full time job for me, avoiding death. I guess technically it’s a full-time job for all of us (it’s why we eat, after all 😉 ) it’s just a little more obvious (and less delicious) when you’re Cancerful. There’s a lot more pills. And surgeries. And scans.
I’m sorry this post has taken such a turn for the morbid, but morbidity has kind of been following me around for the last four years. And sometimes it’s just nice to talk about it. And maybe make a few jokes about it. Because it’s there anyway– we’ve all agreed on that– so why not?
I have a sneaking suspicion that talking about things, and joking around about things, makes it easier to accept things. And accepting things makes it easier to not worry about things. And not worrying about things gives you more time in your day to do fun things. Like ice skating. And eating cookies. Or ice skating and eating cookies at the same time!
But I’ve gotten off track. (I tend to do that.) Here I am talking about death and ice skating and cookies, when really what you come here for is Inspiration and MRI results! And I haven’t given you either.
So how ’bout I cut to the cancerful chase, and give you both! Right now! OK, here goes!
My last MRI was… Hmm. Honestly, I don’t remember much about it.
And I swear I’m not just trying to play it cool, like some kind of Charlie “Cool Cucumber” Peacock.
(Although that would be a hell of a name. With hilarious initials.)
Nor am I just trying to build suspense, or piss you off (even though I’m aware I may now be doing a little of both). Honestly, I just… wait, what were we talking about again?
Oh! The MRI! Right.
Honestly, I don’t remember much about it.
Really! I don’t even remember when it was!
All of which is to say that:
A) After 4 brain surgeries (or is it 5?), my memory isn’t what it used to be. And…
B) The MRI itself was unmemorable. I do at least remember that.
Now that is some epic beating around the bush!
But really– the MRI was unmemorable because it wasn’t much different than the one before it.
It was stable, in other words.
And with brain cancer, stability is a really good thing. So it was good!
So there you have it in plain terms: MY LAST MRI WAS GOOD!
“Hooray!” You say.
So why didn’t I say “HOORAY!!!” on here when I had the MRI? (It was kind of a long time ago, now that I think about it.) Why the hell didn’t I post a picture of me with fireworks shooting out of my two upward-pointing thumbs, surrounded by a Celebratory Chorus Line of Leggy Blue Brains, like this one:
Well first of all… it would have been a difficult photoshop job. (Although, if anyone wants to give it a shot I promise to post the results along with the results of my next MRI. As long as both are good, obviously.)
But let’s face it– I didn’t need to post a ridiculous picture of myself with a C.C.L. of L.B.B.’s.
I could have just posted the word “GOOD!” and been done with it– everyone would have been satisfied and super happy. (Alright, maybe the word “GOOD” with fireworks shooting out of the G. Feel free to add that to the image, Photoshoppers.)
But I didn’t even do that.
So what the hell is my problem? Why do I have such a hard time being super enthusiastic and fireworky about good MRI results? What am I trying to be, some kind of C.C.C.P., starring in my own primetime animated network special, “You’re One Cool ©ancer ©uring Cucumber, Charlie Peacock” !?
As awesome as those initials are (even better with the Cancerful ©’s), and as much as I would love to have a primetime animated network special about curing cancer in a really ©OOL way, I swear I am not trying to be a C.©.©.C.
So don’t start calling me Charlie “C.©.©.C.” Peacock (or even “C.C.©.©.C.P.”, for short.)
Because I was happy that the MRI results were good. Fireworks did not shoot out of my thumbs, and there were no dancing brains (as far as I could see, at least) but I was happy.
Actually, I think a better word for what I felt was “relieved“…
• Relieved that I don’t have to have any more brain surgeries– for at least two more months! (Two months, brain surgery-free? I’ll take it!)
• Definitely relieved that I won’t (for now) be subjected to any more weird experimental treatments, that might save my life, but might also put me in the hospital three times because they’re so hard-core at attacking my cancer that they also attack the shit out of me. (That happened. And it sucked. I mean, come on! Cut it out! I’m trying to get better here, not worse!)
• Honestly, I was above all relieved that I would have more time to get used to where I’m currently at– to the latest version of “My New Normal.” We’ll call it “My Newest Normal,” and while it’s still pretty shitty (as I hinted at in my last post), it is tolerable enough that given time, I could see myself continuing to shape a pretty decent life despite its pretty shitty conditions. I think I can transform this Newest Normal into a wonderfully Cancerful Life! (That would be a good thing, in case you weren’t sure.)
So yes– I’m happy about the MRI results. Happy that I’m not going to die. Yet! And maybe not for a long time!
And one important note on the MRI thing: I really do appreciate people caring enough to ask me about my scans, because they want to know how I am doing. I don’t meant to make light of that. But I wanted to talk about MRIs, and I thought the “Show us your scans!” joke was a funny way in. (Would’ve been funnier if I had breast cancer instead of brain cancer.) And when I mentioned this subject to a Cancerful friend of mine, she urged me to write about it. Because, as it turns out, this is kind of a common issue for Cancerful people.
So there you have it! We, the Cancerful, are more than the sum of our MRI’s. We ourselves sometimes struggle to remember that our lives aren’t just what happens to take place between scan days– they are our lives!
So this is why I try not to get that excited about my MRI’s– good or bad– and why I don’t immediately post the results on here.
Speaking of which, it took me so long to get around to telling you what happened on my last one, that my next one is… TODAY! If there’s anything interesting or important to report, I will post about it here.
If you don’t hear from me for two weeks, or two months, that’s because I’m busy ice skating and eating cookies at the same time…
I’m a big proponent of NOT looking for medical advice on the Internet.
Even though I’m aware that many of the people who find this blog find it because they are doing exactly that.
(In fact, the most popular search that leads people to the Brain Chancery is “How would you know if you had a brain tumor?”)
Somebody thinks they have a brain tumor, and this is where the Internet sends them. How terrifying is that! (It certainly makes me an even stronger proponent of not looking for medical advice on the Internet…)
Anyway, despite my misgivings about the Internet’s reliability when it comes to medical advice (It said I would be dead in 14 months– nice try, Internet!), I recently found myself ignoring my own advice and scanning through a bunch of websites, looking for information on a weird medical condition I thought I might have. And when I say “weird medical condition,” I’m actually not talking about brain cancer– I already know I have that. (And I already know enough about it– there isn’t much the Internet would be able to tell me about what it’s like to have a Brain Chance.)
No, so the weird medical condition I was searching for information on is called *******’* ******** (NAME REDACTED SO OTHER PEOPLE WHO THINK THEY HAVE *******’* ******** DON’T WIND UP FINDING THIS BLOG BY ACCIDENT, THINKING IT MIGHT HELP THEM. BECAUSE WE CERTAINLY WOULDN’T WANT THAT.)
And as it turns out, having *******’* ******** would totally explain a lot of the strange symptoms I’d been experiencing. And these were symptoms that probably had nothing to do with brain cancer.
Stretch marks, for example.
“Stretch marks?!?” I’d find myself almost saying out loud as I looked with disgust at my newly (and oddly) fat belly, sitting atop newly (and oddly) skinny legs. “How the hell did I get stretch marks!?”
It was a real mystery. I mean, I had clearly put on some weight over the preceding months, thanks to the medication I was on (as well as the fact that I could barely tie my shoes, let alone go running).
But I hadn’t put on that much weight! So how the hell did I end up with stretch marks!? Even my friend who is seven months pregnant doesn’t have stretch marks!
(POINT OF CLARIFICATION SO SHE DOESN’T KILL ME: She is not fat. At all. But she has a human being growing inside her belly! And still, no stretch marks!)
As it turns out (and as my doctor confirmed, since I certainly wasn’t going to just take the Internet’s word for it), these kind of stretch marks are called abdominal striae, and they are a very common symptom of *******’* ********.
And so were a bunch of the other weird things I’d been experiencing, like the dry skin, and that oddly fat belly sitting atop those weirdly skinny legs.
(They call this “central obesity,” and if you’re smart with your Internet searching you’ve probably already figured out what *******’* ******** is.)
So that explained it! That is what I had! I had *******’* ********!
I felt better already.
Funny what a relief it is to be able to pinpoint causalities– to be able to put a name to a thing that ills you. In this case, the symptoms of *******’* ******** had already begun to fade, but what really made me feel better was knowing what the hell had caused them.
This, I realized, is why people search for medical information on the Internet, and it’s why I wound up doing the same thing: just being able to put a name to the disease gives you a small, desperately needed, sense of control. By knowing what it is, you are no longer just being wantonly pushed around by some Mysterious Ghost Illness (M.G.I.?) that could, the fear is, do anything to you. Whenever the hell it wants to.
Oh, I suddenly have purple stretch marks on my belly? Well then who knows– tomorrow I may just sprout a tiny set of hands out of my forehead!
It’s terrifying being a big fleshy ball of physical, mental and medical unpredictability. It’s terrifying, because you have no idea what the hell might come next.
Much in the same way that you wouldn’t want to have someone standing behind you all the time, randomly blaring an air gun and scaring the shit out of you– having a disease that you can’t name, or don’t understand, messes with you on a fundamental, instinctual level. We’d like to be able to at least predict the air horn, or the stretch marks, or the tiny forehead hands before they happen. Because then we could prepare ourselves.
Or, where applicable, run for our lives.
Speaking of which, I can’t wait to go running again. I just realized that the last time I went for a run was almost a year ago, when I ran to the hospital for brain surgery. I can prove it, because we filmed it!
But since then… well, I’ve just been too sick. But I am getting better. (I hope, at least!) And the desire is there– I remember how good it felt, how much it helped me. How much it made me feel better, even though I was sick.
But I look at that picture, the one of me running with Dutch, wearing my “RUNNING (out of time)” t-shirt… I look at that picture, and every time I think “How the hell did I do that??”
Wait, I know… I just put my sneakers on, and I went outside. And I started to run.
That’s how I did it.
And it always made me feel better.
30 minutes ago I sat in this chair, I picked up a pen, and I started to write.
And it definitely made me feel better.
Maybe I’ll get up and put my sneakers on…
I actually sat down to write a completely different post, but when I looked at the date on my computer, I realized that it appears to be April, in the year 2016.
This is a mind-blowing enough fact on its own, but it also reminds me of another not literally (just figuratively, and quite intendedly double-entedrely) mind-blowing fact:
I have had brain cancer for 4 years.
Four years! Four freaking ©ancerful years! Holy smokes… that is 1/10th of my entire life. That’s a lotta life!
It’s also 328% more life than the measly 14.6 months they tell you you’re gonna get when you get yourself some glioblastoma, and you go looking for median survival rates on the internet. (See, I told you not to do that four years ago! Remember?)
So… Four years of living with brain cancer. Wow!
Now that is not something I would have voted for back in 2012…
Or, you know what? Maybe I would have voted for it, now that I think about the last four years, and all the things I experienced in that time that I never otherwise would have. (For example: Do you know what cerebral spinal fluid tastes like? I do! It’s not half bad, actually. And I’ve got plenty of extra, so hit me up if you’d like to give it a shot, and maybe I’ll see if I can send you a shot.)
Besides, if I hadn’t voted Brain Cancer 2012, what would the alternative have been? A Normal Life? Without Brain Cancer? That sounds about as exciting as a nap in the park.
Mmmm… a nap in the park. That sounds nice.
Actually, it sounds boring. I’ve been so overwhelmed with nap-needing and nap-taking in just the past ONE year that really all I would like to do now is to just stay awake. Hell, if I could I would stay awake for four more years. At least!
Anyway, I’ll never know if I would have voted for Brain Cancer or not, way back in the year 2012. I’m no time-traveller, and I can barely hold a steady conversation with myself today, let alone myself from four years ago. Plus, I think my current self would probably freak my past self out with my weird scarred gourdlike head and my deep familiarity with cerebral spinal fluid (including what it tastes like).
I didn’t have a choice in the matter, anyway. There was no election back in 2012. This Steady Olde Brain Chance just happened upon me.
And through some wild combination of luck, determination, medical science, chocolate, luck (yes I said luck twice– that was on purpose. This is The Brain Chancery, after all), and perhaps above all the help and support of people I love (some of whom I’ve never even met!), I have survived, as a living person with glioblastoma, for four years.
On April 5th, 2012– Four years ago to this day– I walked myself up an impossibly steep hill to an MRI clinic in an impossibly tall Hong Kong skyscraper. After some banging and some whizzing and some who-knows-what, I then saw a picture of the insides of my own brains, for the first of what would come to be many, many times.
And lo, what a surprise this very first brain-gander had in store for me! Because the image I saw on that day looked exactly like this:
The picture looked exactly like that, because that is the exact picture I took at the exact moment I first discovered the tumor inside my head. The text, of course, was added later. (MRI machines don’t allow for customization, even in Hong Kong.) But see that big spot on the bottom left side of each head shot? That’s my cancer! That’s what it looked like, on April 5th, 2012– four years ago today. Well how d’ya like that!
All sorts of things have happened since I took that picture. And honestly, not all of them have been bad. A lot of them have been bad, of course. Just not all of them. And we don’t like to complain around here in Brain Chanceville… it feels like the fact that we’ve magically retained the ability to communicate at all leaves those skills best reserved for useful endeavours, like writing this blog. Or writing songs about cancer.
Or even… just talking to myself, since to be honest I quite frequently need a serious dose of inspiration just to keep this whole thing going. And since a lot of you have said I’m good at that (being inspirational) I have of late been trying to see if I can inspire myself.
Unfortunately when I talk to myself, especially in my head (and especially, for some reason, right when I wake up in the morning), the conversation tends to be more of an anxiety-filled “oh my god oh my god what the hell are you gonna do you idiot” kind of thing than the more inspirational stuff I reserve for the shining Cancerful halls of the Brain Chancery.
I can really freak myself out sometimes, when I talk to myself. And so one trick that I’ve learned, is that I shouldn’t always listen to myself. I should try to only listen to myself when I’m being encouraging. To myself. And if I’m not being encouraging, then I should tell myself to shut the fuck up and talk about something else for a minute. I mean, I don’t need myself to remind myself of how precarious my situation is– I know fully well how precarious my situation is, thank you!
But if you want to give me a firm but endearing kick in the ass, Myself, and tell me that I can do it, because look how far I have come, and doesn’t it feel great when I make it even just a little bit further than I thought I could? If you wanna say that, I’ll take that. I will listen. Because honestly sometimes, I really need a firm but endearing kick in the ass.
And I’ll bet sometimes a lot of you do too. So here you go, in case you do:
You can do it.
Seriously, you probably can.
And while we’re at it, try this thought on for size too, since it doesn’t cost a thing, and maybe it’s even true…
Now that’s a nice one, isn’t it? And maybe it’s even true! Maybe everything will be OK!
Hey– maybe it already is.
And maybe I’ll blink my eyes and wake up, and it’ll be four more years from now, again. It’ll be 2020. And I will be awake. Maybe that will happen. And that would be A-OK with me.
So cheers! To four more years.
I realize the title of this post sounds like some kind of inspirational, self-help aphorism (like, “There is no ‘I’ in “team” [or “cancer,” for that matter]), but I don’t mean it that way. I mean it literally. I have learned, only just recently, that, in certain important contexts, there really is no such thing as giving up. Giving up (as the old song doesn’t say) isn’t just hard to do– it’s actually impossible to do.
I was extremely surprised to learn this.
And disappointed, to be honest. And most of all, frustrated. But let me provide some context.
You see– only a couple of weeks ago, I was dealing with a whirlwind of pretty serious shit-wrinkles that suddenly made my life, frankly, harder to bear than I was able. It sucked. It was too much. It was the roughest patch of road I had experienced in 40 years, causing me to (not literally, but very much figuratively) fall apart.
And when that was happening, right in the middle of the worst of it, I thought (many times) “I don’t wanna do this anymore. I can’t do this anymore. I don’t know how to do this, I can’t, I want it to stop.”
I desperately wanted it to stop. I needed it to stop. I COULDN’T do it. I COULD NOT bear it. I wanted to press the “off” button on the red-hot poker that was singeing me in the gut and the brain and all sorts of other sensitive spots that you really just want left alone under normal circumstances, and especially so when you already have brain cancer.
So I thought about this – how to make it stop. I just wanted to give up! Yeah that’s it– give up!
But how the fuck do you actually “give up?”
And it occurred to me in that moment that it’s actually impossible. At least in this context — in the context of extremely overbearingly painful life situations — there is no such thing as “giving up.”
I mean, if there was, what would you do?
You can’t just go lay on the floor and drool stick your hand in the air with a white tissue hanging out of it in surrender. Because that wouldn’t work. That wouldn’t change a goddamn thing. You’d still be feeling and going through all the same shit you were before you started drooling on the floor, except now you’re on the floor and your arm is getting tired from holding it up so you’re actually worse off.
And I know this all sounds really stupid, but I had just never been in this position before– the “I SIMPLY CAN NOT BEAR THIS, I JUST WANT TO STOP” position. (And I’ve even done yoga a couple of times.)
It just felt to me, in that particular moment, that there should be a way to just give up, to make it stop, to opt-the-fuck-out of the deal that was causing me so much pain. Or at least I wished there were. And I thought about it, and realized there wasn’t.
Now I’m smart enough to realize that there IS an obvious op-out solution that fully constitutes “giving up,” and which the more morbid of you have probably been waiting for me to mention, and which I’m not going to avoid just to avoid scaring you, or my mom, or whoever else is reading this.
And that giving up solution is to just fucking go kill yourself. I mean, committing suicide would certainly would seem to meet all the requirements and qualifications of a very official “giving up.” And it does.
And that thought did occur to me, but only because in running through the logic of the whole situation I realized that it was an option. It just wasn’t an option for me, because honestly even that didn’t feel like giving up.
I mean, what I was getting at– what I was hoping for– was a way to just STOP. If you’re playing in a basketball game and you’re playing terribly and your leg hurts and you want to stop, you can just walk off the court and not play anymore. If you’re reading a book and it sucks and it’s making you unhappy, you can just stop reading it.
Killing yourself, on the other hand, is the equivalent of setting fire to the entire basketball court or the book in an effort to stop participating with it. But it kinda makes you participate with it even more– just in a different way. First, it takes a bunch of work. And it’s gonna make a HUGE mess. And it’s definitely gonna piss off a whole bunch of other people. And you might not even succeed at it! You could fail at giving up! And so killing yourself doesn’t feel like giving up at all– it feels like a real pain in the ass.
It feels like you should just be able to lie down on the floor and fall asleep and have all the bad things stop. But you can’t. I was extremely disappointed to learn that life just doesn’t work like that.
So my point is this: if your life is causing you so much pain that you just don’t know what to do and you can’t possible bear it for one second more… you’re just kinda fucked, because there is no way to give up.
See? It’s true!
There is no such thing as giving up!
How’s that for inspirational!
Wait, so if you can’t give up… then what the hell can you do?
There’s only really one thing you can do, and that’s to JUST KEEP GOING.
And just see what happens.
And so that’s what I did.
And wouldn’t you know it– things got better.
I’m now about a month out from the deepest valleys of the shitwrinkle. And owing to a lot of wonderful friendship, a bit of craftiness and hard work, no small amount of spectacular luck, and the kindness, grace and generosity of some unspeakably wonderful people… I suddenly find myself back on my feet. With real solid ground to stand on. And my mom just got me a beautiful new rug for my place, so I’ve even got that to stand on!
Oh how the tides can turn, if you just keep going. And what the hell else can you do? Because clearly you can’t just stop!
So I still feel like shit, on a daily basis. My brain is such a foggy semifunctional haze that if you had to jump into it for ten seconds you’d be shocked that I can get a fork to my mouth, let alone string coherent sentences together. But I’m getting used to it! I’ve resigned myself to the fact that I have a “new normal,” and this is probably it. It’s a far shittier “normal” than what I had 4 years ago– or even 1 year ago, but it still (miraculously) includes me being able to walk, and talk, and laugh, and smell roses. And with solid ground (and a nice rug!) under my feet, that ain’t so bad. That’s called a life. And I’m happy to have it.
I don’t have to stop. I don’t even want to give up. I get to keep going!
And I think I will.
Oh and yesterday I learned something that’s going to help quite a bit with this whole not-stopping-keep-on-going-thing. And that is the results of my latest MRI, which I had on Monday, under my awesome new health insurance plan (which is another major miracle).
So yeah those MRI results… I had a full scan on my brain and spine, and other than the fact that I was in the machine for two hours and it got really boring, the results… were good!
It appears that all the cancerspots™ that appeared on my last MRI in December (spots which had already looked relatively stable compared to the scan before that) are now all of three varieties: exactly the same, a little bit smaller, or just not there anymore. There’s still stuff in there that’s clearly cancer (as there has been for four years now), but the point is, the small bit of cancer that’s in there is not really doing anything.
And since my cancer (glioblastoma!) is the equivalent of a Bloodthirsty-Combination-Scorpion-Lion-Dinosaur-Octopus (B.C.S.L.D.O.), for the shit to just sit there and not do anything for months at a time is nothing less than miraculous. So something must be working– or some combination of all the various things I’ve exposed my brain to in the last few years. Either that, or my B.C.S.L.D.O. just isn’t as bloodthirsty as they normally are. Or maybe he just felt bad that I had to go through that annoying series of shitwrinkles, and felt like he should give me a break for five seconds.
And a break I have been given. Several, in fact. More than anything, I’m just so relieved that I won’t have to subject myself to any new surgeries or chemotherapies or experimental virus treatments, for at least a few months. I can keep on keepin’ on and continue getting used to my Totally Shitty New Normal That Is Perfectly OK Because I Am Still Alive And Roses Still Smell Really Good!
So I’m glad that there was no such thing as giving up.
Because it sure is nice to be around, and I can’t wait to keep it up!
It seems that pressure has been a recurrent theme around this Cancerful brain lately– and I’ve certainly been feeling a lot of it– physically and emotionally and, well, spiritually I guess. But let’s start with the physical pressure, as that’s the easiest to explain, and will also give me time to warm my brain up to get around the more philosophical stuff.
PRESSURE POINT #1: WRITE!: A lot of you, a surprising amount of people in fact, have egged and nudged and prodded and gently reminded me lately to do exactly what I’m doing right now, which is to update this blog. I sincerely thank you for this. If you were one of the eggers or nudgers, please believe that I appreciated and do still appreciate the eggy-nudging. It shows me that people care what I put down here, and that people care about and are following this Cancerful Journey, which means a lot to me.
It’s incredibly touching–and humbling– to have someone look at you and plead for you to tell a more of your story, a story that’s normally just circling around in your own confused head, feeling like a struggle that is nothing but your own, that no one else could possibly understand. So having you understand parts of it, and (even more shocking!) actually wanting to hear more of it, makes me feel far less alone with it. And this is a big fat Cancerful story that I’m carrying around and living in, so it’s really nice to not have to do that all on my own from time to time.
Also since I am a writer and this occupation usually comes with a notorious level of foot-dragging, the nudging that I’ve been receiving as of late has also provided enough of a gentle kick in the ass to get me around to finally doing what I am doing right now, which is writing. Which already feels good, two paragraphs in.
That’s the sound of some of that pressure being released! So that’s nice, already. So thank you. So here we go. We’re already going! I’m writing! Pressure gauge is coming down!
PRESSURE POINT #2 — HYDROCEPHALUS!: This is the physical pressure that I said I would start with, but didn’t really start with. You see, I am suffering from too much pressure inside my brain. Literally. And there’s even a name for this condition, and that name is “hydocephalus.” I think I’ve mentioned this before, but since (at least) my surgery back in June, when I had a small bit of recurrent tumor resected and (far more dramatically) was the first human being on Earth (or anywhere else for that matter) to have a genetically modified cold virus injected into his brain, I’ve been having this internal brain-pressure problem.
Since that last surgery (I think it actually may have started before then– we can’t blame the cold for everything– but as you will see we will blame it for a lot) my brain has been producing too much cerebral spinal fluid (CSF). Either that, or my brain has not been disposing of extra CSF as quickly as it should, or normally would. The result is basically too much stuff squeezed inside my one non-expandable skull. And the result of that has been… well, a lot of stuff, but primarily an annoying and ever-present headache. Not the worst headache ever, but one you’d rather not have. Sol, interestingly and surprisingly enough, the last 5 or 6 months of my medical treatment have actually been geared primarily towards solving this hydrocephalus problem. Which is kind of a good thing, since the cancer itself, aside from those tiny spots that appeared on my spine, has been relatively inactive and unscary. So that’s good. The bad thing is this CSF situation has been a real pain in the ass (brain) that it would be nice to not also have to deal with. But we’re dealing with it. And it seems like we’re making progress. So let me explain a little bit more…
The hydocephalus was (you may remember, if you saw me at that sushi place in Little Tokyo in October) why I had CSF leaking out of the side of my head for a couple of months. Gladly, that has stopped. And I (nor you) no longer have to wonder what cerebral spinal fluid tastes like. The answer is it doesn’t taste like anything. It’s actually less offensive than sweat (although a bit more disconcerting to have pouring out of your face, especially when you’re eating miso soup and your shirt collar is starting to look like you’re either really nervous or you just came in from a rain storm.
Part of the reason I haven’t been writing (or doing much else) lately is that I’ve also been, since August, on a bit of an in-and-out of the hospital merry-go-round. Which has been really annoying, primarily because prior to this Big Pressurized Brain Interruption, things were going pretty great with my Totally Cancerful life. I had (still have) a wonderful mission, and was getting a lot done, and was feeling pretty well, and was (still am) extremely grateful to have such a mission, and to feel good enough to be pursuing it– in fact, extremely grateful to be able to to be doing anything at all. This is really, really lucky.
So things are going great, but then… I randomly get a crazy headache and a fever and I pass out and I wind up in an ambulance. And two weeks later I emerge, knowing the names of a lot more neurologists and Infectious Disease specialists than I did before, at various hospitals on the east and west coasts. Nice people, all of them, and extremely kind and helpful and knowledgeable, but I would really like to have just stuck with the mission I was on. It was going really great. I didn’t particularly need to stop and suddenly become an expert on all sorts of new types of brain ailments– the brain cancer was enough.*
*Although, truthfully, I (very luckily) find the medical / biological side to all of this stuff that has been happening to me endlessly fascinating. Which has really been helping me get through all of this– it’s like I’m enrolled in a free pre-med crash course with life or death stakes that’s happening inside my own head, while I use that same very head to process and learn ] it. For me, this part of the brain cancerful journey has been really neat. I’m just lucky to be a somewhat insatiably curious person, and even luckier to have had doctors who are patient with a patient who likes to play with the doctors on their turf. Which in this case is my turf, i.e. my actual brain. Anyway, it’s been fun. I know a lot more about the brain, modern medicine, and the inner workings of hospital institutions now than I would ever have imagined. Oh and here’s one very tiny but important lesson I’ve learned: most hospitals have a machine that is actually called “a blanket warming machine.” If you are ever offered the product of one of these machines, just say yes. Hell, don’t be afraid to just randomly ask a nurse if there are any warm blankets to be had anywhere. The answer is usually yes, and you’re always gonna get one if it is. And who doesn’t want a warm blanket to suddenly appear out of nowhere and be draped over your lower half? One of life’s great pleasures, I say. (The bar gets lowered the more days straight you spend lying in a hospital bed. And I’ve been stringing too many of those days together lately.)
DE-PRESSURE POINT #3: WHAT THE SHUNT!?: So this particular pressure problem– the hydocephalus– is also the reason for my most recent brain surgery, which depending on how you count, could technically be classified as BRAIN SURGERY #5! Yep, I had my fifth. Sorry for just sneaking in a whole brain surgery like it’s no big deal, but it was definitely the least serious of all of them, it happened relatively quickly, and I didn’t even have to jog to the hospital for this one. I was already at the hospital. With two warm blankets already draped over my legs.
Yeah, so, a couple of weeks ago, I had a minor surgery to put a SHUNT in my brain! The worst thing about a shunt is that name– “shunt?” really? Who wants to say yes to getting a “shunt” installed in their head!? Well, I despite the name I said yes anyway, and I’m glad I did. Honestly it’s a pretty safe and ingenious solution to ridding yourself of too much cerebral spinal fluid, and aside from the decidedly bizarre-looking scars and tubes I’ve got lurking under my scalp at the moment (and probably for many years to come) it doesn’t really affect or bother me at all. It actually definitely seems to be helping with the brain pressure issue… pssssssssssssssssssss see there goes more!
I’m on a de-pressurizing roll!
So this is what my head looks like right now:
You can see the tube from the shunt starting up around my forehead. it’s basically just a plastic tube that starts up in my head, then travels down and goes into my body, draining extra CSF out of my brain and down into this mysterious spot in my abdomen that is good at disposing of little bits of extra bodily fluids. I forget what this mystery spot is called, but I swear it’s real. Basically it’s the body’s equivalent of that weird place at the junk yard where you go to get rid of your extra motor oil and bacon grease or whatever unusual liquids you need to safely dispose of. That’s what my shunt is doing for me. It sounds totally weird and gross (and kind of is, I suppose) but it’s helping. Plus, my head has taken one even more fantastic step into evil-villain territory, so I ain’t complaining about that. Not one bit.
PLUS, coinciding with the Great Shunting of 2015, I got another nifty new thing installed inside my head! This one is really cool.
DE-PRESSURE POINT #4: THE OMMAYA RESERVOIR: At some point in the discussion of all of this shunting, the point was raised that my particular brand of brain cancer is literally swimming in cerebral spinal fluid. Which is to say that all of my tumor cells are in places that are surrounded by CSF– from the original tumor in my brain down to those tiny little spots on my spine that appeared more recently, all the cancer I’ve got is and has been in CSF territory. This raises a few issues, namely:
- It could be (it probably is) that there have been and maybe still are some random tumor cells in my spinal fluid. This is nothing to freak out about,it’s just logical based on the fact that my cancer is where it is.
- It could be (it probably is) that my cancer spread to those spots on my spine by floating there in the CSF. All it takes is one cell to land in a spot where it’s able to stick), and that’s clearly what happened to me. *Reminder: those spots haven’t grown at all, and no new ones have appeared. So things there in that realm are actually looking good for the time being.
With all of that in mind, the idea was raised that it would be smart to treat the CSF directly — if we could get some chemo in there, then not only could we potentially eliminate stray tumor cells that might be floating around in the CSF, but we’d also have a far more direct route for getting chemo to the tumor cells that we already know are there (like the ones on my spine) since they are surrounded by CSF, all the time.
As it turns out, some smart guy already thought of this and came up with a fancy solution — and as I write this, I’ve already got the thing installed in my head! (It’s that bump on left side of my forehead with the butterfly needle sticking in it)
That’s right folks, it’s called an “ommaya reservoir,” and basically it’s just a little receptacle that they install under your scalp, that can be filled up with chemo (or chocolate pudding), which then drips directly into your cerebral spinal fluid.
You don’t have to do a damn thing! You just get it refilled every once in awhile, and you go about your daily routine and let the thing drip its chemo, and hope for the best!
The only question is, do you take it with the chemo? Or the pudding?
(I went for a combination of both, and so far I’m feeling decidedly less pressurized, and a lot more chocolatey. Hey and while we’re talking about pudding, does anybody have a nice recipe for home-made chocolate pudding (i.e. not in a plastic container? Please share in the comments if so! I only want the good stuff going into my brain.)
So that’s where I’m at in terms of treatment– I’m feeling relatively good at the moment, cancer seems to be on hold, everything is working, and while the headache is still there, we’re working on that. Things could be a lot worse. (I could have been told this only works with tapioca!)
DE-PRESSURE POINT #5: THE CANCERFUL FOUNDATION!: Now that I’m back on my feet and my chemo delivery system is silent and futuristic as can be, my absolute focus is getting back to all the wonderful Cancerful things I was working on before getting slightly curtailed by all these extra brain-adventures– which is to say, making a Cancer-Curing Movie, and Cancer-Curing Website, and a magical card that makes having cancer a perk!
And the only thing the Cancerful Foundation needs to make these things happen besides my fully-functioning (cheers to that!) now somewhat de-pressurized brain is… your help!
So if you feel like putting some really POSITIVE pressure into the sails of The Cancerful, now would be a really really wonderful time to make a contribution to our proud, cancer-curing mission!
(That’s the sound of cancer-curing dreams coming true!)
Thanks for reading. Things are good. I’m as cancerful as ever. And it turns out that chocolate pudding is even more delicious when you process the flavor directly through your cerebral spinal fluid… 🙂
Now that the summer of 2015 is (unofficially) over, I’m left wondering what it was like. See, a few days before it started, on June 18th, I had my 4th brain surgery, and in the 11.6 weeks since then I’ve mostly been… well, recovering from that darned brain surgery.
Sure, I’ve had some fun, and I got a little sun, but I also spent a good amount of time in… 4 different hospitals in 3 different states. I took at least 3 ambulance rides (woo hoo!), I experienced my first spinal tap, I had about 15 different individual fevers, I had a drain put in my brain, and I was hooked up to intravenous antibiotics for several weeks that were probably unnecessary and made me break out into hives. What a blast! (It wasn’t.)
But I don’t like to complain, so I’ll quickly shift over to the good news, which is this: Weirdo Medical Summer is now over, and I AM STILL HERE! Woo hoo! (That’s a real “woo hoo,” not a sarcastic one.)
Even better, during these last 11 weeks, I somehow managed to accomplish a bunch of stuff that I’m extremely proud of. And am extremely proud to tell you about right now.
The first thing was, I ran to my brain surgery. (For the 2nd time.) Which was cool and everything, but this time, we filmed it! And made a really cool little film out of it. You may have seen a preview, but here is the real thing. I hope you like it…
This film was made with the help and support of a wonderful team of friends and pros who donated their time, and I can’t thank them enough for their efforts. My hope was that I could turn having to have brain surgery again into something good, and because of this film, I’m glad it happened! And I’ll be even more glad if the film succeeds at its main purpose, which is to raise a bunch of money for the Cancerful Foundation! (We were going to make a video of me asking for money sitting in a chair, but this seemed to be a little more fun and inspiring.)
Speaking of the Cancerful Foundation, the second thing I pulled off during my Sad Sickypants Summer was finishing up our WONDERFUL, CANCERFUL NEW WEBSITE!
If you haven’t seen the new website yet, please check it out. There’s all sorts of info about what we’re up to and all the ways we’re hoping to cure cancer:
We’re making A Movie, we’re making a magical card that turns cancer into a perk (The Cancer Card!), and we’re making a website that helps people with cancer easily get the little things they could really use help with on a day to day basis (it’s called “Cure My Day“, and it’s basically a bridal registry for cancer patients. Like: instead of china, a ride to the doctor on Thursday.)
Oh and I’m also going to start writing “Cancer! The Manual!“– a (not Idiot’s) guide to the things that happen to EVERY Cancerful person that nobody ever talks about. For example: some of your friends will completely disappear (it’s true). And every day, somebody who cares about you or who you just bumped into at Starbucks will lecture you about some vegetable or supplement that you absolutely MUST eat “because my friend’s dog totally had a tumor and it totally went away in like 2 days with this stuff and the big pharma companies are just trying to make money off you with their poison!”
Stuff like that. And a lot more. And it’ll be free. And it’ll be funny. I’ve got a good stash of cancer jokes. And I have learned that Cancerful people like to laugh about cancer now and then, because it rarely happens, and it can totally cure the hell out of you for a moment. And that’s what the Cancerful Foundation’s mission is all about.
So that’s it! Wow, that’s a lot.
But in the spirit of Labor Day– myself and the wonderful Cancerful teammates who are helping me (and who I can not thank enough for their dedication and hard work) still have a lot more work to do.
And we need your help! Because making innovative new cancer cures ain’t cheap. It’s definitely not free. Well, except for the jokes. Like the one where I filled the bag that was draining cerebral spinal fluid directly out of my skull with blue Gatorade, and asked the horrified nurses if there was something wrong with me. (OK, I didn’t really do that, but that image just made me laugh, and I bet somebody out there with cancer will laugh at it too. See, there’s a tiny cured second right there!)
So anyway, if I haven’t asked you already (if you know me, I’m sure I’ve asked you already, but forgive me for asking you again):
Please keep this cancer-curing train rolling at top speed by donating to the Cancerful Foundation!
There are links all over the place on this blog, and on our new website, and even in this series of words right here.
(Did you find it?)
See how easy it is? You don’t have an excuse for not donating! Other than simply not feeling like giving us money. Which is OK, because it is your money after all. Until it’s ours. Or somebody else’s. Like Starbucks. Which tastes good, we get it. (Yes, that was totally a backhanded comparison between choosing caffeinated beverages over curing cancer.) Wait– is guilt a good way to get people to donate money? I’m new at this, so if it isn’t, then please just ignore the fact that I said that Starbucks thing, and focus on anything else I’ve said or done that you find funny or inspiring and might get you to chip in a few bucks 😉
Plus hey– and I mean this– I deeply appreciate the fact that you’re reading this, and that you care enough to do so. That really IS enough, because it inspires me to keep doing this. So I’m gonna keep doing this.
I just really want to make this movie happen, and all of the other cancer-curing stuff I’ve been talking about. I believe in our Foundation and our mission, and I know how much we can help people with what we’re doing. And nobody else is really doing anything like this, and– believe me– there’s a huge need for it. For all of it. And if we don’t do it, nobody else is going to! So we need to do it!
“Chop Chop Peacock, get it done!” (That’s what I say to myself every morning after I chug my turmeric and cannabinoid oil smoothy. No I don’t. ;))
So… we’re just asking for help. No guilt, pushiness or cajoling intended. Just the truth. (And a little cajoling, to be truthful.)
We can really help people here. We’ve already started. I got an email from someone in another country saying that that video of me running made her friend (who has terminal cancer) smile for the first time in weeks. And that’s just a preview of a preview of a preview of what we’re doing. So that feels pretty good. But we need to do more! Think of how much more we can do! And we’ve got the plan and the will– We just need some old fashioned “resources” (i.e., cold hard ca$h) to pull it all off.
And hey– if I have to have another brain surgery and do cartwheels to it this time to make an even stronger case for our Foundation and our mission, I am absolutely willing to… joke around about the possibility of doing that, and then let somebody quickly talk me out of it.
So to sum up…
I jogged to brain surgery for the second time.
Big frickin’ whoop.
Then I got sick.
Boo frickin’ hoo.
But now I’m feeling better, and motivated, and on a roll, and most importantly I’m alive!
Whoopty Frick’ Doo!
(That last one, not sarcastic. But the other ones yes, sarcastic.)
And now I’m asking for money!
Yippee doo I hope it works!
Thanks for reading. I’m gonna go to bed.
G’night from the Cancerful!
Turns out when it comes to brain surgery, the 4th time = not a charm.
Well, I suppose it has had its charms… I mean, the surgery itself DID go extremely well: all the visible brain chance was removed, and I was able to wake up (yet again) with all my functionalities fully functional.
That’s lucky. I would be remiss to short-change those facts. Because those facts are a Real Big Deal (RBD). And I’m alive, which is another RBD.
Plus… the future looks bright if you look at it right. I mean, it could be that this was the last treatment I ever had to do for my glioblastoma. The chances of this are extremely small (this being glioblastoma, after all), but it could be, that I’m all done. I mean, what if I never had to do any treatments ever again? That’s a fun thing to think about. Wouldn’t that be something!
Honestly I wouldn’t mind having to do more, this is some serious shit I’ve got and I’m lucky to be alive at all… I think I’d just like a little break. A year off from surgeries would be nice. At least.
Because this one has been a bit of a pain in the ass.
It’s funny though, my experience with brain surgery #4 is probably actually way closer to what you’d normally expect from having brain surgery… i.e. it should be a bit of a pain in the ass.
Well now I know what that’s like.
As of today, I am feeling better. But I am recovering, still.
The headache was awful, and it’s still there a tiny bit, but I’ve got it under control with the meds, and it seems to be on the way out. As for the head leaking, that stopped for a couple days, which was an enormous relief– I mean as great of a party trick as it was, you don’t really want your face leaking brain fluid all the time. It’s a bit disconcerting.
So that stopped, which was nice, but then it kinda came back a teeny bit in the last 24 hours… which is, again, a bit of a pain in the ass.
But there isn’t much I can do, besides just taking it easy, and resting, and healing. And so that is what I am doing. (And it’s kind of driving me crazy. I mean, I am perfectly capable of lying on the couch all day, but I really kind of despise the notion of me lying on the couch all day. I’m hard on myself that way. So right now, for example, to keep myself from getting depressed, I am sitting in a chair. And typing! This my exercise for the day.)
One of the funniest questions I’ve gotten in the last couple of days (and amazingly, I’ve actually gotten it more than once) is:
“So what else have you been up to lately? “
This is a bit like digging yourself out of a collapsed mine shaft, and, face covered in black soot and still coughing coal dust, having somebody see you and say “Hey, what have you been up to lately! You know, besides digging yourself out of that collapsed mine shaft?”
I JUST HAD FUCKING BRAIN SURGERY AND MY HEAD HAS BEEN LEAKING FOR A WEEK, what the hell else do you expect me to be up to?! Learning to play the fucking tuba?
For the record: I have not been up to anything else lately. Just the recovering from brain surgery thing, which I think is pretty important and worth most of my attention.
Oh wait no– now that I’m thinking about it, I realize I’m totally lying. I have been doing something else, when my head is not pounding or dripping cerebral spinal fluid or I’m not watching “Blazing Saddles.” I actually have been moonlighting a little bit, from my comfy spot on the couch (and/or this chair), and getting some stuff done that I’m extremely excited about and proud of and would love to tell you about!
So what is it!?
If you’ve been following this blog, you might know that:
• I started a Non-Profit Foundation, called The Cancerful Foundation
• In partnership with the Foundation, we are making a movie that cures cancer.
• That’s right, we are making a movie that cures cancer.
• The movie is also a musical.
• Yes, I wrote a lot of the songs. George Gershwin wrote some of them too. (And some we wrote together. We have the same brain cancer, so it’s a fun partnership.)
Making this Movie-That-Cures-Cancer is the most exciting and wonderful and fulfilling thing I have ever done, or ever will do, in my life. I believe in this project so deeply and profoundly that honestly my biggest concern with all this brain cancer / head leaking nonsense is just being able to have enough time & energy to make sure that this thing happens. As soon as possible. Because it needs to happen. As soon as possible. Cancerful people need it to happen. It will cure them. It will cure all of us. It will change the way we think, and talk, (and sing!) about cancer.
And I am as sure of these things as I have ever been about anything in my life.
And the good news is, we are well underway! This thing is happening, and I will not be slowed down. The movie is written, and it is wonderful. The Foundation is running, and it is already starting to cure people.
And just in the last month, despite all the hospital trips and brain surgeries, myself and my wonderful Cancerful partners have made tons of progress on some key elements that will help us make this movie, and all of my cancer-curing dreams, come true.
You see, when you’re running a Cancerful Foundation, and making a movie that cures cancer, there are 2 primary goals that you need to achieve:
1) Getting a whole bunch of money
2) Getting a whole bunch of people to say “yes.”
And to help us achieve these goals, we’re putting together a beautiful pitch package that will explain the movie, and the Foundation, and our cancer-curing mission: a package that we intend to send out to pretty much every single human being in the entire world, to tell them what we are doing, and to ask them if they would like to help us out.
This package includes a short film that we shot the morning of my brain surgery, as I jogged to the hospital. It is going to be awesome. We are editing it right now, and I can not WAIT to show it to you. It’s funny, and inspiring (it actually made me laugh, and cry), and it’s gonna help us get a whole bunch of money, and a whole bunch of yeses.
When the short film is ready (in about a week or two), we will post it here, and I will ask you to forward it to everyone you have ever met in your entire life. (And ideally even people you haven’t met 🙂
And the other thing we have been working on, which is equally awesome, and which I am EXTREMELY PROUD TO BE ABLE TO SHOW YOU RIGHT NOW! is our brand new website for The Cancerful Foundation!
This website is the home for all things Cancerful. It is the hub for the movie, it is where all the music and the videos will live, and it is where we will keep you posted on the production as the movie cameras get closer to rolling!
And for now, this website is also (and this part is very important!) the place where — starting right now — people can make donations to the Cancerful Foundation to help us make our movie and cure the Cancerful!
People just like you!
And even people unlike you! Ideally, every kind of person there is– they can all donate! And they will! And we’ll be off to the cancer-curing races!
So please check our awesome new website. We already have some music from the movie on there, and there’s even a sneak-preview of the film we shot of me running to the hospital!
Just as important, you’ll find lots of information on the movie itself, as well as a bunch of other cancer-curing projects that we are already working on. One that I’m particularly excited about, that we’re going to get up & running really soon (just need to raise a little bit of money first!) is The Cancer Card. We’re making it a real thing. A real card, that people with cancer can really play, to help them cure their day.
Ahhhh I’m so proud and excited!!! So check it all out!!! And if anything on there gets you feeling even slightly inspired, please click the “DONATE” button up top– you can make a donation right then and there, right now, and that money will go straight to helping us cure cancer, straight away! (And since we are an officially IRS-registered non-profit charity, all donations to the Cancerful Foundation are tax-deductible!)
So THAT is what I’ve been working on. In addition to sitting on the couch. And digging myself out of a collapsed mine shaft and trying to get cerebral spinal fluid to stop flowing out of a hole in the side of my head.
And that’s why, today, despite my slightly achey-drippy head, I am a very happy man.
I am alive, and I am working on things that have the potential to help, and inspire, and cure, a lot of people.
And that’s pretty exciting. It feels pretty great.
In truth, it makes the headache and headleak seem pretty insignificant.
I think now I’ve earned the right to go lay down on the couch. 😉
Thanks for reading.