I’m Sick. (and I kinda like it.)

So I think I’m sick.  But I’m kind of digging it.  Which, if you’ve seen me squeezing all sorts of fun out of having cancer, may not surprise you.  But this time, it’s a little different.

Allow me explain…

The last couple of days, I’ve had a few new things going on (in addition to the litany of old things going on, [where by “things” I mean symptoms and side effects and, well, just general sick-ness.])

For example: yesterday, I was tired.  All day.  Like, weirdly tired.  But I’m weirdly tired all the time, so for me “weirdly tired” means really weird.  Like, supernaturally tired.  The kind of tired that you’d imagine only comes once a millenium, and requires A Thousand Years’ Sleep to cure.

So last night, I did all I could think to do with one night (not yet being sure I’ll have the luxury of 364,999 more), and I made sure to get a Big Damn Solid Dose of Good Night’s Sleep (a B.D.S.D.O.G.N.S.).  Which worked quite well (I clearly needed it, and the lovely new curtains my mom helped me put up worked like a charm in the morning).

But today… same thing!  Super tired.  Hmmm.  What the devil!  And no new meds, nothing unusual going on in the brain lately that would explain this Sudden Swing to the Super Slumberous.  Why the hell was / am I so pooped?

Speaking of poop (it’s relevant, so I’m going to), I think yesterday I made seven trips to the toilet.  Actually I don’t think, I know.  I counted.   Seven sit downs!  And another four just this morning– which would have actually been five if I had actually made it to the toilet in time for #2 #5.  (I didn’t.  Make it in time.  More on this later.  Consider yourself warned.)

So anyway, all this new shit was odd.  Both the sleepiness, and the shittiness.  I hadn’t eaten anything odd either.  So what the hell is/was going on?

Then this afternoon, it occurred to me…

Maybe I’m just SICK!

On top of everything else, maybe I’ve also got a Regular Person Illness (R.P.I.)… like some kind of flu, or maybe even a run-of-the-mill-non-genetically-engineered virus!  These things seem to be going around at the moment, and a bunch of people I know (including my doctor) have been laid low recently.  So maybe I’m sick!

And for some reason, this thought made me happy.  Which did seem vaguely twisted, even to me.  So I’ve been thinking about that, and here’s what I realized.

A few things, actually…

– It’s kinda nice, just as a change of pace, to have something wrong with me that has absolutely nothing to do with brain cancer.  I mean, it sucks — it still feels like being sick — but it’s not any worse than what I am already dealing with (which I’m learning to deal with a bit better, and more patiently, on a daily basis).

Plus– and this is the important part…

– With this kind of sickness– this kind of Old Fashioned People Gettin’ Sick sickness– all you have to do is get some rest, take it easy, and it’ll just… go away.

Holy shit.  It’ll just go away!?!?!

What a fuckin’ luxury!

No brain surgeries?  No experimental drugs injected into your skull… no weeks and months and (if you’re lucky) years of heavy dose chemotherapy…  no direct-brain radiation, no support groups, not even so much as one trip to the emergency room!

Just chicken soup and sleep and passing time with books and movies and it’ll just… go away!?!

Wow.

So I guess that’s why I like being this kind of sick.  I wish they were all like this!

The only real negative effects of this particular R.P.I. (so far at least) have been:
a) a totally sleepy wasted day yesterday, and
b) the aforementioned #2 #5 that wound up in my pants instead of where I would have preferred it to wind up (or down, as it were).

But even that little mishap lead me to take that really nice long shower I’d been putting off for a couple of days. (Look, when you’re as tired as I’ve been, even the thought of getting wet is exhausting, because it means having to get dry again.  So don’t judge).  And it was a really nice shower.  I washed my (lack of) hair and everything.  It felt great.  I should do that every day!  (Shower, not shit my pants.  And actually, we’re in a drought, so maybe I can still only shower every other day😉 )

Anyway, where was I… oh yeah, so even this Unexpected Shitting of The Pants lead to an unexpectedly nice outcome.  Maybe I really do like being sick!

I mean, I don’t want to be sick forever or anything, but therein lies the beauty… I think if I just wait it out, this particular bug is just gonna fly the coop!

I might even miss it.

Well not really, but we did have some good times together.

I’m gonna go eat some soup and wait it out.


PS: If you suspect I am either forcing cheerfulness or just pathologically required to find positives in negatives, you and I are in perfect agreement.  I don’t know what’s up with that either.  And I offer my sincerest apologies to anyone who feels like shit right now because of the flu, or cancer, or having shat your pants, or whatever might ail you.

I’m not pretending it doesn’t suck to be sick, because it does.

But if it can go away (even if just for a moment), well now that’s something worth being cheerful about, isn’t it?

There’s No Such Thing As Giving Up

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!

Searching For Inspiration

The word “Inspiration” has been a big theme around here at the Brain Chancery, pretty much since the beginning.  People have used that word in regards to this blog, and to myself, which always makes me feel a little uncomfortable, but also a little proud– but mostly a little uncomfortable.  I mean all I’m really doing is having brain cancer as best I can.  And it’s super weird when someone looks you in the eyes and says to your face “You’re such an inspiration!”  Because sometimes, to be honest, I don’t feel like one.

The dirty little secret I feel like I need to reveal is that apparently inspiration doesn’t really come that easily to me.

Because as I’ve learned, and despite some of the more inspirational things I’ve said on here… sometimes you’re just not feeling it.

Sometimes inspiration just doesn’t come.
Sometimes you just can’t find it, no matter how hard you try.
And this is particularly hard when you need it the most.

On one level, I’ve been searching for inspiration just for this blog post for a couple of days, because a few people (thank you) have asked me for an update.  And I’ve really wanted to write something.  But to do that I had to… well, I had to actually figure out what to say.

I have a bunch of blog post ideas scribbled in my notebooks that I’ve been wanting to write about for a long time, ones that I saved up, so I considered using one of those pre-made bits of inspiration.  So I scanned through them… but none of them felt right.  They’re all good ideas, and I’m sure you’d get a kick out of each of them (especially the one where I was going to assess whether it’s better to get ebola or glioblastoma.  The answer might surprise you!).  But despite having a bunch of reserve inspiration right there in front of me that I’d saved for a time just like this, I wasn’t feeling it.  None of those ideas brought out that spark.  None of them made me want to write.  I didn’t find any of them… inspiring.

Eventually I realized this is because what I need to talk about is what’s really going on with me right now, which is that I am… searching for inspiration.  And not just for a blog post.  For something a lot bigger than that.

At least when I realized this, I realized I had the title for this post.  So that got me started– “Searching For Inspiration” was itself enough of a tiny bit of inspiration to at least get me writing.  And here I am, a few paragraphs in, so that is a minor victory.  I should be happy about that.  I am.  Sort of.

I need something more, to be honest.  I need more inspiration than a blog post– I need something that’s going to get me through what I’m going through right now.  Which to be quite honest, might very well be the most difficult week of my life.

It’s been a rough start to the new year, to say the very least.  It’s also been a rough start to my 40th year, which began on December 28th (to little fanfare, despite my having written last year on my birthday that I really should be making a point to appreciate these birthdays, each one I get post-glioblastoma is a bit of a minor– no, major– miracle.  So here goes… “Woo hoo I’m 40!  Whoopty f’in Doo!“)

Anyway 40, and 2016, have both been really terrible so far.  And ironically, that doesn’t have anything to do with brain cancer.  Well it does, of course, because everything having to do with me now has something to do with brain cancer.  After all…

Brain Cancer: nuthin' beats it!

Brain Cancer: nuthin’ beats it!

No, but all of this terribleness that’s been happening isn’t bad cancer news– in fact I just had an MRI between my birthday and the new year, and it showed that all of the could-be-cancer-spots in my head and my spine looked exactly the same as they did one month before.  So that’s a good thing.  Things look stable with my brain chance.  Another minor miracle.  And that should be enough to make me happy.  Shouldn’t it?

It would, but the problem is everything else.  Everything else is kinda really bad.

A couple of major shitbombs were delivered onto my Cancerful head just in the past week. I’ve been feeling really wiped out, hazy– a shadow, as they say, of my former self.  So I was already pretty low, and feeling really weak– definitely not ready to receive a couple of heavy blows that would knock me even lower.

First, I lost my health insurance.  Then, I lost my main source of income.

Gulp.

The first problem, luckily, is already somewhat solved– I was able to sign up for new insurance (which is a major wonderful miracle that I’m extremely grateful for) but it’s going to take a little while to kick in.  So I am, currently, uncovered.  Which is scary when you’ve got a little brain chance.  I had some appointments scheduled for tomorrow (including an MRI on my brain and spine) that I’ll be unable to do, and I have to put off for a couple of weeks.  Which isn’t the end of the world– the most important thing is that I will be insured again soon.  And nothing that crazy should (I hope) happen between now and February 1st.  (I trust I won’t get hit by a bus in the next few weeks.)

But the second problem– the income problem– is much bigger, and really came out of nowhere.  I don’t want to get into what happened or why, other than to say I had a good plan and enough money coming in to keep me safe and stable going forward for quite awhile, and now I suddenly don’t.  And that’s a huge problem.  And it has really sent me spinning.

First, it really throws a wrench into my already precarious life situation.  I’ve been incredibly lucky– and have worked very hard– to be able to keep my head above water despite having a Serious Case of Cancer (S.C.o.C.), and now suddenly this little (huge) wrinkle brings my ability to maintain that life into question.  And it also throws a huge wrench into the whole Cancerful plan I’ve been working so hard on.  It means I might have to stop all the cancer-curing projects I’ve been working on–  the things that have been putting wind my sails and keeping me inspired and making me believe that all of this might just be worth it.

I had never in my life felt like I was dealt more bad cards than I could deal with.  And that includs being dealt this one:

BRAINCANCERCARD

(That’s a pretty bad card.)

But brain cancer, for me, also came with a lot of positives– a lot of love, a lot of compassion, and the inspiration to start a mission to help other people in ways I never would have otherwise dreamed of.

Brain cancer lead me to write a wonderful, cancer-curing movie, to start a cancer-curing foundation, to run a marathon by myself in honor of my hero-– it lead me to do all sorts of things with my life that I never would have otherwise done.

So it hasn’t all been bad.  Some of it has been really good.

In fact, since I was first diagnosed, my motivating principle has been to try to make some good of this.

Early on in me becoming cancerful, I randomly had this thought:  “Wouldn’t it be something if you could make it so that this was worth it?  So that you were glad that you got brain cancer!

When I had this thought, I found it so beautiful that it immediately filled me with inspiration.  That really would be something!  Imagine a life like that!  Imagine what you’d have to do to make getting brain cancer worth it!

And so I did imagine.  And somehow, when I did, I felt like it was possible.  I felt like I could do it.

I felt inspired.

So I figured what the hell, why don’t I give it a shot.

So that has been my goal, my motivating principle, for almost four years now:  To Make Getting Brain Cancer Worth It.

And somehow, I’ve been doing pretty well with that goal.  For a lot of the last four years, my life has been more fun and rewarding than any of my years B.B.C. (Before Brain Cancer).

And I’m not just saying that.  This cancerful journey really has been something else!  I’ve seen, and felt, things that I never would have otherwise– beautiful things much bigger than myself that I would not trade for anything.  In a lot of ways, it already has been worth it.

And here I thought I could keep that going– I could keep being Cancerful, and curing myself on a daily basis by smelling roses and laughing and going hiking and writing and basking in the beauty of a world that felt even more precious and beautiful now that my presence in it has a looming limit.

But the rug was just ripped out from under my feet.  No, more than just the rug– the floor underneath it too.  And the ground underneath that.

So now when I look down, there’s suddenly nothing there– and it scares the shit out of me.  It terrifies me.  And that’s a feeling — fear– that I’m just not really used to.  Which isn’t to say I think I’m a particularly brave person– for some reason though in the four years since I’ve had my Brain Chance, fear isn’t something that hit me a lot.

I remember feeling a twinge of it back in Hong Kong, when the reason for my headache and the new exciting theme of my life — Cancer! — first revealed itself.  Back then, in a Chinese MRI facility on a steep hill in Kowloon, the whole situation was seemed so odd and interesting that I found it kind of exciting.  It was like the excitement/fear you experience when a roller coaster is about to flip you up over that first towering hump and send you flying down towards Who-Knows-What.  There was a level of adventure and an excitement of the unknown that for some reason I enjoyed a bit.  (I may have just been bored at the time, who knows : )  Plus I’m a writer, so it immediately felt like something great to write about.  And I did.  It was a huge inspiration.  And that helped it not be scary.

But this new chapter, this new shit-wrinkle — and the fear I’m feeling now– is just scary. It’s just fear.  There isn’t any sense of excitement and adventure that comes along with this latest curveball, just a large heaping dose of “How Are you Gonna Pay For Your Rent And Food And Health Insurance!?”  This isn’t that exciting, unless it’s part of some weird game show I haven’t heard about yet but I hope gets cancelled.

And all of this just came conveniently at a time when I’ve already been feeling like I barely have the strength to tie my shoes and do a crossword puzzle.

So that’s why this has probably been the hardest week of my life.  It’s a lot to deal with, on top of already having had a lot to deal with (i.e. glioblastoma, hydrocephalus, and all of the fun that comes with being a sick person.), and all of that added up together equals Too Much To Deal With! (TMTDW!)

In retrospect, it’s easy, I guess, to handle having brain cancer and to keep on keepin’ on like a total Cancerful Badass (a TCBA) when you’re lucky enough to have your feet firmly planted on stable ground.  And I have been that lucky.  I have been very, very lucky in that respect.  Because that stable ground for me has been:

  • A safe place to live, and a way to pay for it, that (I thought) I didn’t need to worry about.
  • Family and friends who filled every day with love and support.
  • The ability to get medical treatment at a wonderful hospital with wonderful doctors, with access to the absolute cutting edge of what’s out there for the horrible disease that I have.
  • The people who have followed this blog and what I’ve been up to and have continued to express their support and give me confidence and help me believe that the work I’m doing has meaning for other people, and can actually help other people.  This alone has been enough to get me this far through my glioblastomarama.
  • Speaking of which, the Cancerful Foundation and the things I’m trying to do with it (Curing cancer, one moment at a time– through the Movie, the Cancer Card, the Cure My Day website, and hopefully a lot more cures) has been a wonderful, powerful driving force that not only keeps me going but gets me closer to that ultimate goal of mine: to be able to say that GETTING BRAIN CANCER WAS TOTALLY WORTH IT!

This fear that I’ve been feeling, I now realize, is really rooted in the fact that this latest set of obstacles threatens me achieving that goal.  It threatens the cancer-curing path that I was on.  It means I might have to stop, because right now I’m so overwhelmed that I’m just not sure how to continue.  And that’s the thing that has me so scared.

***

I came to terms with losing my life four years ago, when I was first told that I have cancer (and not just any old cancer, but one they jump over each other to describe as The Scariest Cancer Of All!)

What I guess I haven’t come to terms with is losing the things that I am now trying to do with that life.

I think I wasn’t particularly afraid of dying before because when I got brain cancer, my life had already been pretty wonderful and fulfilling, and I genuinely felt mostly lucky and grateful for that.  It was hard not to feel like I’d already lucked out– because I really had.

And then I somehow survived brain surgery, and then I survived a few more, and I was somehow able to live another day(s) and smell more roses and see more sunsets!  And then I started curing cancer– and not just mine!  Out of nowhere, without expecting it or ever looking for one, I suddenly had a meaning for my life!

So I was given a really nice first round of life, and then an absolutely wonderful and rewarding Bonus Round.  And I couldn’t help but feel lucky and grateful for all of that.  And that feeling kept me going, and it lasted for a long time.  It lasted all the way up until this past week, when the sky crashed down and the ground disappeared.

In retrospect, maybe it was a bad idea to create a situation where my life could actually have some meaning.  (I’m kidding, of course.)  But by giving my life the potential to have meaning beyond itself, I also gave myself something much bigger to lose.  And that, I think, is what has me so scared right now.  I’m scared of losing everything that I thought I could make of this unexpected and wonderfully Cancerful life.

Me, I’m OK with losing that guy– he’s had an good time in his 40 years!  But all this curing I’ve come up with– the movie, the Foundation– those things still have a lot of work to do and a lot of people to help and cure.  But these latest roadblocks I’ve hit have left me afraid of how I’m just going to keep myself going, let alone all the crazy and ambitious and wonderful Cancerful things I’m been trying to do.

I don’t want to stop, but I also don’t have any idea how I’m going to keep myself, and all of this, going.

So there’s my latest blog update!

I’m in a terribly Cancerful pickle!

Thanks for reading!  :)

***

I was a little worried about writing this post because I knew that if I wanted to be honest–and I always want to be honest when I’m writing, especially here–  I knew it was going to be pretty dark.  And bleak.  And not that inspirational.  Because that’s where I’m at right now, to be honest.

I feel like I’ve developed a certain Cancerful reputation (“Chad, you’re such an inspiration!) and talking about how scared I am and how my life is kinda falling apart is a lot less entertaining than singing a song about cancer, or running to brain surgery.  I don’t want to be sad, and I don’t want to write about being sad.  But if I’m being honest, I’m sad. And scared.  Things really suck right now, and I don’t know what I’m gonna do.

And I was talking to a dear friend, and I expressed this concern to her, about being afraid to write because it would be depressing.  And she told me that no matter what it was that I wrote, if it came from me, no matter how dark it was, it would still come packaged with some beautiful little glimmer of hope.

I was surprised by this, because I haven’t been feeling particularly hopeful lately.

But when I thought about it, I realized that she was right.  There probably would wind up being some kind of hopeful twist, if only because I know myself well enough to know that I simply can’t stand the idea of a world (or a blog post, I suppose) that doesn’t have some glimmer of hope.  Because who would want to be a part of that!?

And just that thought made me happy.   Maybe it was even something to write about.  And boom!  Just like that, I had found a little bit of inspiration.

And then I was talking to another wonderful friend (three cheers for talking out problems, and four cheers for wonderful friends!) and in trying to cheer me up, she suggested that maybe this current shitstorm I find myself in the middle of  is a turning point that will actually wind up leading to something good.  Maybe even something better, she said.

And I knew she was just trying to cheer me up, and I didn’t particularly believe that what she was saying was true, but I also have no idea what really is going to happen, because I can’t see over this hill yet.  And this is a really big hill.

And I looked at the hill, and then, suddenly, that fear that I have been feeling became like when you’re on the crest of a roller coaster, about to tumble down into Who-Knows-What.

Suddenly, that same fear that’s been tearing me up and eating me up and waking me up in the middle of the night became a little bit exciting.

Because you know what?  Who-Knows-What could turn out to be something completely wonderful.

Hell, it could turn out to be the best thing that ever happened to you.

So put your hands up the air and scream, because the ride is still going.

Actually, maybe the ride is only just getting started…

beast3

Pressure

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.

Psssssssssssssssssssss!

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:

Shunted!

Shunted!

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)

Oh my ommaya!

Oh my ommaya!

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?

IMG_2381

(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!

You can do it right here, right now…!

BLOG-WIDGET-9-28

Psssssssssssssssssssss!   

(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…:)

I’m leaving the hospital!

Which means I’ve been in the hospital.

Which may come as a surprise, since I have not updated this blog on my most recent brain-chancering.

But luckily I have been reprimanded about this enough (even by people I have never met– how Cancerfully awesome is that?) that I now sit on the edge of my hospital bed — my bed (and desk, and table), for the last week, with my bags packed, hammering out the first few sentences of this post, to force myself to get it done.

Because sometimes you have to force yourself, to get it done.

I was reminded today that sometimes you have to have to force yourself, just to stay alive.

And that’s not always easy.

But typing is easy.  At least it is when you’ve got something to say.  And I’ve got things I should have already said.

Like, I’m gay.

No I’m not.

I’m the Prince of Paris.

I’m not that either, but I now hope to be some time in the near future.

And it’s important to have goals.  Things to look forward to.

Like being in my home with Dutch de Dog in less than an hour (knowing me, 2 hours).

Either way, this post will be written, Thy Will Be Done.

And Hallowed Be Thy Name.

(What an awesome thing to say to someone.  Next time i see my friend_______ (whoever books their name in that spot first will get this treatment next time I see them. Go!)

Next time I see my friend ________ and we’re saying goodbye, I will say:

“Later, _____!  Thy Will Be Done!  And Hallowed Be Thy Name!

I bet if you’re the Prince of Paris you get that from people every freakin’ day.  Now THAT is living’, my Cancerful friends.

I bet if you’re the Prince of Paris, your new Jewish Mother (did you know I have my own official Jewish mother now!?!   Like I needed one– my own mother is Jewish enough, even though she’s not Jewish at all.  She thinks.)  I bet if you’re the Prince of Paris, your new Jewish Mother wouldn’t say that too you.  First, it’s way too Catholic a thing to say.  And you know what she also definitely wouldn’t say to you?  Something my wonderful new Jewish mom just actually said to me while reprimanding me for not updating my blog?  “You Son of a Bitch!!”   (sorry Lynn!😉

She was of course kidding.  And of course she wouldn’t say that, because then she’d just be calling herself a bitch. Assuming she has fully accepted me as her Actually Catholic Jewish Son.

But I’m getting off track (of course.  Hence the 2 hours.)  So allow me to pause and stand up and move toward the door, which is closer to…

MY HOUSE. ABOUT SIX HOURS LATER.

And finishing this post.  With relevant medical information, not just mildly hilarious religious jokes.  So here it is!

WHY I WAS JUST IN THE HOSPITAL:

So on Friday, the same kooky random thing happened to me that happened back in late August, at my sister’s house in Jersey.  Which is to say, I suddenly got this weird high fever, and basically passed out.  This time though, on my own bed.  Which was nice.  But again, when somebody (this time my lovely friends downstairs) came to check on me, they couldn’t really wake me up.  I was MegaGroggy™, and apparently somewhat ornery about going to the hospital.  But they (smartly) got me there anyway.  Turns out I had a fever… for going back to the hospital!  Luckily, this time that meant MY hospital, where MY doctors live ( in little healing caves filled with magical science crystals) which was a major relief, and allowed me to get far more involved in my treatment, and to push things a bit harder so I could get home in 4 days, not 4 weeks.  And so here I am, home!  And feeling much better, thank you.

SO WHAT’S ACTUALLY GOING ON WITH MY HEAD?

    • Again, this remains mostly a mystery.  All signs / symptoms looked to the docs here (as they looked to the docs in Jersey) like meningitis– a word that freaks people out because it’s usually caused by bacteria or infection in the brain, and it often kills people.  In this case (like back in august) they tested the bejeezus out of my spinal fluid, or CSF (that stuff I’ve been producing way too much of, to the extent that it was spraying out of my temple for awhile, and I was bottling & selling it at a hipster Juicery in Silverlake.
    • So again, they started treating me with lots (LOTS!) of antibiotics, which is the safe thing to do even if you’re not sure that the meningitis is caused by a virus or bacteria.  And again, they’re testing my CSF and not finding any bacteria or viruses in there, which is good.  But bad in the sense that we have no idea why this is happening. I could be a result of the Uncommon Cold Clinical Trial that I Was involved in– which was specifically designed to get your immune system fired up & fighting, even if you don’t have a real infection.  And then to kill cancer cells instead, while it’s looking for something to fight.  So maybe that’s what happened (or is still happening).  We’ll probably never know.
    • Currently though, I am feeling a lot better.  Close to normal(ish).  Which for me, is good.  I’m on a bunch of antibiotics, and as they test for and eliminate different bugs that I don’t have, they eliminate more of the antibiotics I’m on.  I’m now down to 3, which I am able to administer at home, thanks to these awesome little portable IV medicine balls that allow me to be home, or wherever I want to be, not on IV pumps at the hospital 24 hours a day.  Which is awesome.
    • Medicine Balls!

      Medicine Balls!

    • I’ll be on these guys for a few more days, so I’m taking advantage by heading out to the desert to another National Park this weekend, to retest my theory that US National Parks are one of the most powerful cancer-curing agents out there.  This theory was bolstered, in fact, by a quick trip through TWO national parks last weekend, that I’d never been to, that totally cured the shit out of me with their big weird beautiful 2,200 year-old trees…Giant Sequoias are more powerful (and taller) than chemo!
    • I mean, look at that Cancerful guy’s face!  Sure, it looks pretty porky (from the steroids and un-restrained chocolate consumption), but it also looks pretty cured, don’t it?  That’s because it was, and is!  When your back is resting against a tree that’s older than the bible, and you’re surrounded by that much majestic LIFE, you don’t really give a shit about cancer.  And I didn’t, when those pictures were taken.

Kings Canyon Cures Cancer!

And I still give less of a shit about cancer, a week or so after these photos were taken.  So yes, I’ll say it again: National Parks Cure Cancer. And we at the Cancerful Foundation will be exploring this theory more, in the very near future.  So stay tuned!  We’re gonna eat some Joshua trees, this coming weekend!  Which will make us both fatter, AND more cured!

  • Ok so there it is.  Hopefully I’ve explained things semi-sufficiently enough that my various extremely caring and wonderful mothers will stop yelling at me and calling themselves names in the process.
  • If you still have any questions, please send them along.  But that’s pretty much it.  AS FOR MY ACTUAL CANCER: it’s still there, but not really growing much.  We’re gonna start on some new chemo (one that i mentioned earlier, which is pretty cool & not scary, and which I’ll explain more in a forthcoming post.  I PROMISE, MOMS!)
  • But the most important thing going on is this: I was alive today, ALL DAY.  And it was fun.  I’ve learned that being alive is actually one of the best cures there is.  Especially when you’re paying attention to the wonderful things around you–  things like that tree behind me, which is one of the biggest living things on earth. (To give you an idea of how big: the trunk is about 40 feet in diameter, and the lowest branch is 100 feet off the ground.)
  • And guess what?  I’m gonna be alive again tomorrow!  And I’m going to see some friends that I love, some very old and some very new.  Look at all this wonderful stuff, just waiting to happen because I’m doing my best to stick around and be there for it!  And even that can be hard to get done.  Just sticking around. But I’m doing it!  And it’s working.  And it’s worth it.  I don’t regret a second of it.  Well, maybe the decision to eat the first 37 feet of that Sequoia for dinner.  I should have stopped after the first few feet, but the steroids make you really ravenous…
    • Ooo, now that I’m thinking about it, I gotta remember to bring  some Worcestershire sauce to Joshua Tree.  And a nice Pinot.
  • Goodnight friends, and thanks for reprimanding me to keep on blogging – that means it means something to people other than myself, which helps me keep doing it.  And I like doing it.  Always makes me feel better.
  • As proof: I feel better now than I did six hours ago.  Which might also be because I just pooped a 30 foot tall sapling into my toilet.  (Does anyone in the 90026 have a water-tolerant chainsaw they can lend me?)

Oh and by the way, our fundraising efforts have been pretty successful, and we thank you for that.  But this wouldn’t be the New Cancerful Chad if I wasn’t making poop jokes while ALSO asking for money, so if you’ve got it in you (saplings, mulch, etc.) maybe consider dropping a few bucks @ the Cancerful Foundation’s donation page so we can do a few things we want to do and don’t have enough cash right now to do (because running to brain surgery isn’t cool enough to make all your fundraising dreams come true).  Here it is again:

PEOPLE WITH CANCER LOVE DONATIONS BECAUSE IT HELPS THE CANCERFUL FOUNDATION TAKE THEM TO NATIONAL PARKS TO CURE THEIR CANCER!

 

Am I Enjoying This?

I just found something that I had written in my journal that I (of course) barely remember writing, but luckily I had marked the page with a sticky and a big message saying “BLOG THIS!

See, there it is, resting on Dutch’s head (which is also resting):

BLOG THIS!

And who am I to ignore such an insistent note to myself, so I read it, and it turns out I agreed with myself, and so here I am about to BLOG THIS—–>

(How about that: a free post, out of the blue, out of my head, and out of the past!)

And here it is:

September 16th, 2015.  1PM.
For some reason I've been in a really good mood all day.
Unassisted by any pills, booze, or news.
Which is odd since I'm at the hospital right now to determine
what (if anything) to do about this new SPINAL SITCH.
I'm not particularly (at all) nervous about it, but yet
I do have absolutely no idea (I have some idea) 
what will be different for me 1 hour from now.
It could be horrible.
But I'm used that. Three and a half years of that.
No need to start fretting now.

Maybe I feel this way because I've made some decisions
in my gut, and my heart, and combined/separated
this new spinal twist from the path that I was-- AND STILL AM--
on.  (This is important: I'm not leaving the path.
I feel that deep down, and it feels good.)

I had a great meeting with one my board members this
morning, I feel clear and awake, MY HEAD STOPPED
LEAKING! (after dripping so much at dinner last
night that I looked like I was sweating and the entire
top of my shirt was completely soaked).
I Had a good chat with another board member later, thought
of a great plan to do a Cancerful Road Trip to 
hand out Cancer Cards, and bring Cancerful people
to places that can cure cancer for
a moment, and usually an entire day, like National Parks.
Or museums.  Or just places with a lot of garden roses.
(Those always work).
So I've got that to look forward to!  

A Cancerful CureTrip!

But I swear I was in this good mood before that 
wonderfully Cancerful idea occurred to me.

IS IT BECAUSE I ENJOY THIS??
Is it because I actually enjoy
Standing on the edge...
Living with constantly high life stakes...

I think I do enjoy it a bit.
Maybe more than a bit.
Because it really...
a) puts things in perspective.
b) ... makes LIFE exciting.  √

I don't like that first choice not only because it's
(more than) a bit cliché, but really because this
is less (not at all) about diminishing bad things,
and more (all) about enhancing good things.
It's not like "Oh I have brain cancer, 
I might die soon, that bird shit on my jacket
doesn't suck anymore."
It's way more like "wow, fresh mountain air smells
even BETTER now.  How is that possible?
(Who cares how, it just does, and I'm not gonna 
question it, I'm gonna enjoy it.)

The point is... living on this kind of knife's edge
makes
   LIVING
   REALLY
   WORTH
   SOMETHING.

It makes it easier to feel that.  Viscerally.
Throughout the day.  
Like a SPARK:
"Hey, I'm fuckin' ALIVE right now!"

It makes it impossible to ignore that fact.
And that's a pretty good fact, when it's a fact.

Of course, all of this works only if your state
of being at that particular moment is tilted
enough toward the CURED, and less toward
THE CANCER PATIENT.

And right now, I feel pretty good.  And that's lucky.
And I know, even with this new news and new treatment stuff
coming my way, that my state of feeling pretty 
good isn't going to downhill anytime soon.  I've
got some time with this state of feeling pretty
good.
SO I'M OK.

Nay, I'M BETTER THAN OK...

I'm CANCERFUL How Are You?

I'm Cancerful, How Are You?

My surgeon, for 3 out of my 4 craniotomies.

Nuthin' Beats It!

Dr. Hu, definitely not expressing hope for a 5th surgery with that thumbs up.

I love those guys.

Oh, and you know what else has had me feeling pretty great (and cured) lately??

All the wonderfully generous donations and comments and emails and offers of help that have been flying our way!

In the past couple of weeks, word has really been getting out, and we have had some pretty wonderful people reaching out to us and offering their time and energy and support, so that is really exciting.

I’ve been working really hard on all this Cancerful stuff you’re seeing for the better part of this year (with some time off in the hospital with a tube in my head and a needle in my spine, although I managed to work both of those into the blog for sympathy:) ).

So to see people like you (YOU!) reacting so emotionally and honestly and generously and (perhaps most importantly for me) understanding what we’re doing here, and what our mission is, and wanting to support that mission… it’s amazing to me.  Wonderful and amazing.  Honestly, it means everything.  It validates everything that we are trying to do, which gives me the inspiration to keep on going.  Plus, it helps me get even closer to the point of believing that THIS WAS ALL WORTH IT.  (The brain cancer, I mean.)

I already feel that way, to a strong degree. But man, if we can make this movie… that thing’s gonna cure a LOT of people. And then I will say with 100% certainty that I am absolutely glad I got the ol’ brain cancer in my brain. Heck, I’ll say it now.

(I actually just really said it out loud, and it made me smile.  And I knew I was being completely honest.)

Because this is fun. And pretty damn meaningful.

Plus, this is way better than what I would be doing right now, if not for the brain cancer.  Which is running a multi-national office supplies retail chain in my spare time.  Full time, of course, I’d be an astronaut. (Staples on the Moon!)

And speaking of generosity (were we speaking of generosity?  I thought we were talking about extraterrestrial office supplies.  But anyway…)

Look how much money we’ve raised!

We’re doing pretty good! We’re setting up movie stuff and getting Cancer Cards printed as we speak!  Cancerful things are rolling!

BUT (here I go again, filthy beggar), we ARE still only 61.33333333333333333%  of the way there to our fundraising goal for this year.  And no one likes repeating decimals.

Especially Dutch.  And the Dutch.

So how about we shut down that Irritatingly Infinite Three, and get some more CancerfulCa$h in the coffers?? Wouldn’t it be something else if by the end of the day we were up to something like… a nice honest percentage like 75%? I mean, who doesn’t like being three quarters of the way there?  Then there’s only 1 quarter left!  That feels way more doable than being 0.666666666666666 away from the goal– because those 6’s will just keep on going forever and ever, so you’re never really gonna get there, you’re always gonna be an infinite number of Irritatingly Infinite Three‘s away!

So please help make our numbers less annoying & Click here to give us a kick us up at least .067 %!  Or even better (or at least just as good) if you’ve already donated and aren’t into fractions, tell somebody you know about how awesome it is what we’re doing, and ask THEM to chip in a couple hundredths of a percent!  Just a few hundredths of a percent!!  And if they like both cancer AND math, they’ll be sure to get us closer to that last quarter!  (And if they get confused and only donate an actual quarter, that’s OK too.  But then you might want to question their supposed expertise at math.)

So that was my Blog From The Past (well, only a week and a half ago), which is actually still completely relevant.  I’m not at the hospital right now, but I AM going there tomorrow (just a little Hu chat-n-hug, nothing major).

But most importantly,

YES, I AM ENJOYING THIS!

How about that!

Last (and least) here is a MINOR BRAIN-ETC. QUESTION-ANSWERING STATUS UPDATE:
– The Eagles finally won, so that helps too.
– No, despite what you might have heard, I am not pregnant.  I just have cancer.
– I am back in LA (for a couple weeks now), not in a hospital in some random other state.
– And I’m feeling pretty good and getting lots done.  Hooray!
– I started on the chemo (Temodar) again last week, and as I suspected it’s not
bothering me a bit.  Hopefully it’s bothering my cancer, at least a little bit.  That’s all I need, because I only have a little bit of cancer.
– The first Cancer Cards are coming REALLY soon, so if you want one (or a whole bunch) give us a shout here or on thecancerful.org website and we’ll make sure you’re playing them ASAP!  (But not to cheat your friends out of paying your fair share of the bill.  Unless they would think that’s funny, in which case go for it.  It’s your call how to use your new Cancerful powers.)

Thanks everybody and goodnight!  Let’s wake up to some less-decimally donation numbers!  (And if you can get PayPal to let you donate an amount with an infinite repeating decimal, we will be really impressed.)

An Update! (He Said Succinctly)

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?

Arabic:
بلاغه

Chinese:
简洁

Danish:
Kortfattet

Dutch:
Bondig

French:
Succinctement

German:
Kurz und bündig

Greek:
Συνοπτικά

Haitian Creole:
Façon

Hebrew:
תמציתי

Spanish:
Manera sucinta

Welsh:
Gryno

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, veryVERY 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.9-21-15_spine-w-arrows

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.

Me and My Spine

Me, and me with my head cut in half

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.

Cancer spreads.
Mine did too.
But not very successfully.
Woo hoo!

(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:

CancerfulI 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…)
The Cancer Card!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.

Cancerfully yours,
– Chad

What a Summer! What…? A Summer?

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!

WEBSITE-home-screen-shot-for-BLOG

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!

cancer!!

 

MONEY CURES CANCER TOO!

Thanks for reading.  I’m gonna go to bed.

G’night from the Cancerful!

An Uncommon Two Months

When last we heard from our intrepid Brain Chancerian, he was sitting on his parents’ porch, luxuriously breathing fresh air from a wide open outside sky while bitchily typing on his blog about how difficult it is having people ask him “How are you?” all the time.

Hey Peacock, you think that’s difficult?  {Yes, I do.}  I’ll tell you what’s difficult– why don’t you try spending 16 out of the last 30 days in the hospital?  No, four different hospitals!  None of which let you get up and go outside for even 4 seconds, and all of which have machines that beep murderously if you so much as look at one of the 37 wires connecting them to you, let alone detach and disable those wires so you can get up to pee on your own for once (just once!), without alerting a team of nurses that nature is calling so they can offer their forced and utterly unneeded assistance in answering what has now become a completely unnatural call.  Try doing that.  That is difficult.

{I know.  I just did all of that.  And it totally sucked.  Sucks, in fact.  Because I’m still doing it.  Currently at Jefferson University Hospital in Philadelphia.  I need to pee.  And I wanna go outside too.  And why are we talking to each other like this?  Aren’t we the same person?}

Yes.  Let’s not fight.

So today is exactly two months from my grand Brain Surgery #4.  Two months!  And… I’m still in the hospital.  I’m still, apparently, recovering from brain surgery.  For two months.  This sucks.  This has never happened before.  Let’s hope this will never happen again, or I’m definitely not going to be going into my brain surgeries with so much gusto.

So it’s two months from my brain surgery, and in those two months, in the spirit of a Sopranos recap-the-previous-season montage, here’s what has happened in those two months:

 

• June 18.  Had surgery.  Went home.  Had a terrible headache.  Probably from the Uncommon Cold.  Don’t know exactly why, since nobody’s ever got this cold before.  I’m the #1, and the #Only.

• Got a fever, again don’t know why.  I barfed.  Hard.  And when I hard-barfed, my IBP (internal brain pressure) spiked, causing CSF (cerebral spinal fluid) to start bursting forth from the wound on the side of my head (WOTSOMH).  This was weird.  Turns out CSF is colorless, odorless, and flavorless.  (Yes, I tasted it.  I offered some to Paulie Walnuts too, but he wouldn’t touch it.  He looked at me like I was crazy, and called me a “sicko.”  I laughed.  Paulie is always saying hilarious old-fashioned things like that.)

paulie walnuts

• A couple days later, I’m at home and my head is still leaking, and Christopher and that nimwit pal of his Brendan drive over in another hijacked Comley truck!  I was hoping for a new TV, but this truck was filled with blow-up sex dolls from Hong Kong.  I never seen anything like it.sex dolls

Christopher gives me a half dozen cuz he says he feels bad about my sex life, but I know it’s just a joke, and what he really wants to say is he feels bad about me having cancer, and having to have brain surgery again.  He gets real scared about that shit.  I’ve learned that most guy friends are really bad at communicating about cancer.  Illness just freaks them out– most of them just never want to talk about it.  Although Christopher– I gotta give him credit, at least he tries.  Anyway so I turn down the dolls because I already have enough, but I tell Christopher I just don’t want Uncle Junior up my ass when he figures out who tipped that rig full of plastic pussy.  Cuz you know Junior, he’s gonna find out, and he’s gonna go frickin’ bananas when he does.  I don’t need that shit, I already got frickin’ brain cancer for godssakes.

• Things are too hot around here, and I still got a BAD headache, so I decide to drive up my sister’s place in north Jersey.  It’s on a lake, nice and peaceful.  I could use some of that.

• Turns out I’m not allowed some of that.  I go up there, we go out on the boat, we drink some beers, everybody’s havin’ a blast.  Then we go home, I go to bed, and I wake up in the middle of the night and barf all over myself.  I don’t remember anything after that– my brother-in-law found me lying on the bed unresponsive the next afternoon.  They wisely call an ambulance and get me to a hospital.  This is the last time I’ll be a free man for the next 10 days.

• So I stayed at that hospital (Overlook, in Summit NJ) for the next week and a half.  At first, they think I have a really bad infection that got me so feverish I passed out and kind of temporarily lost my mind.  So to fight the infection they started me on 2 types of antibiotics, 3 times a day (I mentioned all of this in my last post in more detail, I’m recapping here just because we’re doing one of those “What happened last season” recaps.

• While I’m at Overlook, they keep testing my blood and CSF over and over, but they can’t really get a handle on what kind of infection I have.  The fluids just won’t culture, and if they don’t then it’s impossible to determine which bug I got or how to fight it.  So they send me home to my parents’ house, and continue me on these really high doses of broad-spectrum antibiotics, which I get delivered at home and am able to self-administer using these neat little balls that contain the antibiotics…IV stuff

You just hook the ball up to an input tube already stuck in your arm, and once you connect it and open the valves, the ball begins contracting like a rubber balloon (which, essentially, it is) and slowly pushes the antibiotics into your arm.  So you can carry the ball with you wherever you go, which is great.  But you still have to do it 3 times a day, cleaning all the connectors and tubes before and after every change, so it takes a long time to do, overall.  Overall, it’s a pain in the ass.  You may not be in the hospital, but you’re still a patient.  At least you don’t have to warn somebody every time you want to pee.

• So this was my life for the next week, hooking two of these things up to my arm for a couple hours 3 times a day.  Nicer than being in the hospital, but still a pain in the ass, and a lot of work.  I’m still officially a patient, not able to have a regular life.  Most of my time is consumed with managing drugs or resting or just flat-out sleeping.  The highlights of that week were going to a gorgeous sculpture garden in Trenton with my mom, and putting together a puzzle with her a few days later.  I gotta remember to do more puzzles.  This puzzle was of The Shack, which if you’ve ever been to Long Beach Island, you would recognize…

The Shack, LBI

• That was an alright week, unfortunately it ended with me getting another fever.  Everybody was worried for me, even though I wasn’t for myself (the fevers were coming almost once a day, but they weren’t very bad, and they were going away quickly every time).  And since the Worrying Everybodys all wanted me to go to the hospital, I conceded, and found myself back at Overlook Hospital by Friday night.

• That stay was luckily a very quick one.  Nothing happened, and I was able to leave the next day.  One thing I learned was that they were still unable to culture anything from the samples they had taken when I first showed up there.  So this wasn’t looking good for being able to figure out what exactly the infection was.

• Back to Pennsylvania, and on Sunday the 9th of August I was able to do something pretty awesome: I went to the New Hope Auto Show with my dad.  This was something we used to do every single year together.  I think we were both really happy to find ourselves there again together, still drooling over the E-Types and making jokes about why we weren’t the ones who got to have Ferarris, when clearly we would appreciate & operate those cars as well as or better than any of the losers there who were actually holding keys with a yellow shield and a black horse.  One cool thing though is there were at least 4 cars in the show that were exactly the same as cars my dad had owned back in the day.  One was a DeLorean, another was this Porsche Speedster kit car, almost exactly the same one (possibly the same one) my cousin and I sent into a full spin at high speed on a 90 degree corner on Forrest Grove Road, almost slamming into a telephone pole, but finally just skidding to a stop– completely sideways– about an inch before we wrapped the side of the car around said pole.  You should have seen the look on my cousin’s face. And I’m sure he would say the same thing of me.

That was a fun day.  And Dad didn’t find out about it until quite some time later, which allows it to remain a positive memory (well that, and the fact that neither the car nor its occupants got a scratch on them).

porsche speedster

 

That’s the car.  If you look closely at that picture, you’ll notice the IV input on my right bicep, and a bulge in my pocket which is actually the shrunken antibiotic ball.  Of course Dad and I made lots of jokes about my shrinking portable balls, having 4 balls, etc.

• So this was all only 10 days ago, and at that point it seemed like everything was going well and headed in the right direction.  I was still getting headaches and minor fevers, and my head would still bulge with CSF fluid now and then, but overall it felt like I was improving.  One major positive was that my head was no longer leaking — no matter how much it swelled (and the pressure increased) the CSF was no longer leaking outside my face.  So the skin had clearly healed.  Which took a long time to happen– I was afraid it was never going to happen.  But the fact that it did is huge, since the wound is not open anymore and we don’t have to worry about things getting in there anymore.

• 10 days ago things were looking great.  So why is it that I’m writing this from ANOTHER hospital room at 1:22AM on a Wednesday morning?

• Well, the reason is that a week ago, I was back at my parents’ house when I got a REALLY bad fever, and barfed again, and also had started to develop a weird rash covering most of my body. All of this freaked everybody out, including my parents and the doctors at all my previous hospitals, and they all said I needed to go to a hospital, just to be safe.  So I went.  Late Wednesday night.  This time, to Jefferson University Hospital in Philadelphia.  A great hospital, a lot closer to home.  With a real neuro-surgery staff.  That’s why I’m here.

• I arrived here on Thursday of last week.  On Friday, two things happened.  1) I GOT A FREAKIN’ SPINAL TAP!  A real honest-to-God SPINAL TAP!!!  If you’ve ever wondered how painful a spinal tap is, here’s a hint: on a scale of one to ten, it goes up to…

Pain Dial

I also learned that the official, cooler name for a spinal tap (this is only for doctors who perform them and people who get them) is a “lumbar puncture,” or “LP” for short.  I do have a soft spot for “Spinal Tap,” but I kinda like “Lumbar Puncture.”  It’s not quite as scary because it sounds like Babar, but at the same time it contains the words “lumbar” and “puncture” right next to each other, so I guess it is as scary.  If you were gonna have one (Don’t.  Trust me.), what would you want to call it?  A Lumbar Puncture, or a Spinal Tap?  Or perhaps, a Lumbar Tap?  What about a Babar Tap?

And what if, instead of having a six inch syringe jabbed into your spine, you were naming a band?  Which name would you use then?

Babar Tap

So I had the Babar Puncture, which hurt a lot (imagine having a hundred powerful funny bone tweaks, but inside your spine, and all within a few minutes).  Here’s a picture of the needle in my back…

Back Tap!

And then, about a half hour after the tap, I had a hole drilled in my skull…

Brain Drain!

Brain Drain!

The hole was drilled to put in a drain, to help relieve some of the pressure from my overly-pressurized CSF.  So I had a spinal tap, and then a brain drain, all in the same day.  I involuntarily reached new levels of badassness after that particular Thursday.  And I’m tempted to go into some detail about the tap & the drain, since they’re both super interesting, but I’m afraid I have to cover too much in this post and it’s already too long.  So maybe I’ll dedicate a future post entirely to The Tap and The Drain.  (That’s a good name for a bar, if I ever own one or take one over by force.)

• Since all the Tapping and the Draining, the routine has basically been a lot of regular tests + taking samples and seeing if anything will culture to reveal what the bug is that’s been causing all of this.  And if nothing will culture at all, that would mean I don’t even have an infection.

And as it turns out…

  • Nothing has cultured.  Since way back to when I showed up at the first hospital, covered in pee and barf, with a raging fever that everybody thought must have been caused by an infection of my CSV, and which we have been treating with antibiotics for over 3 weeks now, nothing has cultured.
  • Now, most of the doctors are circling around the idea that I don’t have an infection at all.  A few days ago only one of them was saying that, but now they’re all saying it.  I was hesitant to believe it at first as well, since a lot has been happening to me, and something must be causing it.  But what?

As it turns out…

  • The thing that might be causing this (it’s currently the only reasonable option based on the evidence we have) is… you’ll never guess…  my UNCOMMON COLD!  That experimental futuristic cold I got 2 months ago!  That could be the thing behind all the fevers and the headaches… and… hell, maybe even all the CSV swelling and leaking!  That damn cold could be responsible for all of it!  It could be rigging the election as we speak!!

I’m still not 100% sold on this theory, but it is the best theory we have, based on what we know.  Plus, no one has ever gotten this treatment before.  So we have NO idea what could or could not happen.  They’re writing the small print for this stuff based on what is happening to ME, right now.

And we may never know, for sure.  Unless some strange evidence pops up revealing something that we never would have thought of, it’s likely that we’ll never know with any real certainty what if anything that cold virus did or did not do to me.

But the thing is, right now there’s not a whole lot else that COULD HAVE done all this weird stuff to me.  There’s one mystery player in this game that we don’t know much about, and we know a lot about all the other players.  So it might be the easy thing to do to blame everything on Mr. Mystery Cold, but that may also be exactly the right thing to do.  I already like the idea that he’s been causing the headaches all along, because they have been annoying and for some reason it’s better to at least have a concept of why they have been happening.

So all of that is speculative– I’m not sure how much of it even I believe, and it’s all been happening to me.  But I’ve given you the evidence as it’s played out, and I believe I’ve written it all up pretty accurately.  (If I was mistaken anywhere, I blame the Uncommon Cold.  I also blame it in advance if the Eagles fail to win the NFC East this year.)

But wait– HERE’S THE GOOD NEWS!
(And this news is actually unabashedly good.)

Regardless of what the mystery cold virus, or the mystery infection is or is not doing, we are sure of one thing:
Something has clearly been happening inside my brain for the last nine weeks, post-surgery.  It started with an unbelievably bad headache, continued into CSF leaking and swelling, matured into even more (but less painful) headaches, graduated into weird quick fevers that are sometimes super mild and sometimes fast and extremely furious.

All of that stuff has definitely happened.  And most of it has taken place INSIDE MY BRAIN. 

What this could mean for my brain cancer (funny that I haven’t even mentioned “cancer” until now, isn’t it?) is generally very good.  Because all of these things that have been happening (especially the stuff that has been causing me pain, and headaches) indicate that battles are being fought in my brain.  My immune system has been seriously stimulated, and has been working serious overtime fighting battles (whether real or imagined, it might not matter) inside that brain.  And remember: this is the exact idea behind all those immuno-therapy clinical trials I have been doing:  to get something cooking inside the brain so that your immune system is inspired to come in and fight it.  Because once your immune system gets in there to fight (a fake cold, or a real infection, or Donald Trump or whatever) there’s evidence that it will notice the cancer that is there, and it will try to do away with it.  And it has the ability to do that.  There are a few cases of long-term GBM survivors who, it turns out, had some kind of unrelated infection that wound up aiding their body’s own ability to get in and do away with their cancer.

This is the idea that all of these immuno-therapy trials are based on.

So, as it turns out, I may have just gone through not a shitty month of pointless and boring hospitalizations, but a crucial month of a really funky backdoor specialized customized Curing Of My Own Brain Cancer.  It could turn out that that is what just happened.  It could turn out that I never have to go to a hospital again.  In that case, of course, this will all have been well worth it!

Clearly this could also be a very glass-half-full way of looking at things, and I am admittedly prone to default to that rosy position.  But it is fun to imagine that all this nonsense could be the thing that winds up curing me!  That the uncommon cold really does cure brain cancer– just not in any sort of predictable way:  “He had a headache for eight months!  But then his GBM just completely disappeared!  Can they get rid of the headache part and keep the curing part somehow?

 

“How Are You?” “Not That Great! And Great! And In Pain! and Also Sometimes Not!”

I don’t know if I’m the only Cancerful person who is driven (slightly closer) to the edge of madness by this well-meaning question: “How are you?” And its equally well-meaning normally-rhetorical cousins “How are you feeling?” / “doing?” / “holding up?“, etc.

The problem is twofold:

1) I get the sense when people ask me these questions that (because of my Cancerful circumstances) they would actually like an answer.  They really do want to know how I am doing.

2) I feel obliged to answer, and to answer honestly.  Because if I just smile and say “fine!” or even “OK!”, I’m lying.  And I don’t like to lie.  Especially to people who care about me.
But see, the real answers to these questions are REALLY complicated.  It’s A LOT harder for me to answer how I’m doing than it is for you to ask.
Because…
I’m good I’m bad I’m happy I’m angry I’m shitty I’m wonderful I’m alive and extremely grateful for that but I’m also scared and frustrated sometimes and my head really hurt 10 minutes ago but I would not dare complain right now because there are people who… wait, I thought we were going to have lunch?  I’m hungry.  Can I please not be honest with you right now?  Can you take that question back?
You see my dilemma.  This happens to me at least a half dozen times a day.  Via mouth, email, text, skywriter, you name it.  Just this morning I awoke to two (2) “how are you feeling” emails.  And that’s before I even got out of bed.  I still have to answer them.  (I’m still in bed.)
Yes, it is wonderful and lucky to have friends and to be cared about.  But I am not going to respond to those two emails with an efficient “fine!”, or anything like it.  I’m a pain in the ass like that.
And I can’t even begin to be honest with those two people right now.  I have to pee!  I have to eat breakfast!  I have to remove this IV antibiotic drip from my arm!  I have to get out of bed to do all of those things!  Shit, when am I gonna be able to tell those people how I’m doing…
I remember a few years ago some European friends discussing how silly it is that Americans are always asking each other how they are when they don’t really care or expect an answer.  I agree with them now.  We seem to be the only culture that does this as a regular informal greeting, and it really is kind of odd.  Especially considering the fact that we almost never give a real answer to a “How are you?”  So why do we ask it?
The difference is, in my case, people usually actually want to know.  It’s how they show me they care.  And I appreciate that.  I just don’t know how to technically handle the problem of answering the same very complex question over and over every single day.
In fact, solving this very problem was one of the main reasons I started writing this blog.  It sort of works.  I need to update it more promptly when something happens, so people already know before they ask me.
For example, I need to update it right now on what happened to me last week.
Which was that I ended up in a hospital on a leafy hill in northern New Jersey with an infection in my brain.
So if you happened to ask me “WHAT’S GOING ON?” AND “HOW ARE YOU DOING?” right now, here is how I would answer.  (NOTE: This information is only valid for a maximum of 15 minutes.  Things change fast with a BrainChance.  This is also part of my problem.)
So…
Q: “HEY CHAD, WHAT’S GOING ON?”:
A: Well, I’m sitting outside on my parents’ porch (I got out of bed) and I am typing this blog post while I wait for a nurse to come here and draw my blood and help with me with the intravenous line of antibiotics that I have had hooked up to my arm for over a week now.  I’m getting a little specific, but that’s what’s going on.   But why don’t I start from a little further back…
So last weekend (last last Saturday, to be precise – 10 days ago) I had just arrived at my sister’s house in NJ after traveling from the West Coast.  My head at that point was relatively stable; wasn’t hurting too much, hadn’t leaked in a good 5 days.  I was on the mend.  And then, after I went to bed, I suddenly got nauseous.  And I threw up.  And that threw open the Gates of BrainHades.
Which is to say, something clicked when I barfed that started my head hurting AND leaking again.  This had happened before, from the internal barf-pressure, (IBP).  In fact, IBP is what started this whole leaking thing in the first place.
So that wasn’t good.  But what was even worse is that it appears I already had some kind of infection going on in my head.   And all the leaking got the infection (which was probably isolated to the skin around my suture) suddenly spreading into places where it could cause some real trouble.  Like inside my brain.
So I suddenly got a bad fever.  And then I passed out.  And I may have had a seizure.  I definitely peed myself.  Whatever happened, I also became completely unresponsive, so my family called an ambulance to get me to a hospital.
And that’s where I wound up staying for an entire week.
WHAT HAPPENED AT THE HOSPITAL:
– An MRI showed a bunch of nothing really, which confirmed my post-surgery MRI that said everything with the surgery went well.  So that was a good thing.  As far as cancer, things are looking alright.
– A battery of brain tests showed that things were under control fever-and-seizure-wise, which was great.
Here is a picture of all the diodes they had hooked up to my head.  For a week.  This was a major pain in the ass.
IMG_1910
 – A couple of tests showed that I definitely had some kind of infection of the CSF (cerebral spinal fluid); that clear liquid that surrounds my brain, that has been leaking and causing trouble.  This infection gave me the high fever and made me forget the entire 48 hours surrounding my admission to the hospital.
– To combat this infection, they started me on a high dose of 2 different IV antibiotics.  Which I’m not that psyched about, but this is what I have to do to clean up my brain, so I’m doing it.
“SO HOW ARE YOU FEELING?”
In general this has all been a pretty serious ordeal, and I’m pretty sick of spending my time and energy “recovering.”
I’d much rather be spending my time and energy “doing things.”
I’ve got a headache that comes and goes: some of it lingering from the original Uncommon Cold headache, and some of it caused by the leaking / swelling of my head.  I have to be careful to sit and sleep pretty much upright, to keep fluid from building up, and to make it easier for it to drain down inside my body.
Luckily they were able to check me out of the hospital on Saturday night.
So now, I’m just staying at my parents’ house, administering the IV antibiotics to myself.  Which isn’t very hard, it just takes a long time to do, and I have to do it 3 times a day.  So it’s kind of my main job at the moment.  It’s supposed to continue for another couple of weeks.  It’s even more of a pain in the ass than people asking me how I’m doing.
It’s 2:55PM:  and a guy just arrived to draw my blood and replace some of my IV equipment, so I’m going to pause writing this post…
8:09PM:  Wow, the last 5 hours were pretty eventful.  And not necessarily in a good way. In the spirit of “What’s going on?” here’s what happened:
– Guy came, drew my blood.  That was all fine.
– He also took my temperature, which was slightly feverish, out of nowhere.
– Just after he left, this feverish temperature suddenly made me feel like I was going to barf.  (It also could have been all the sparkling water I had just chugged.)  Either way, barfing means IBP.  Which means leaking CSF (cerebral spinal fluid).
– I barfed.  Not much, but enough to get the CSF running again.  Luckily, it didn’t leak OUTSIDE my head, it just started to build up in a lump under my temple.  This is an improvement, but it also causes a killer headache.  So now I’ve got that going for me.
– In addition to the headache, my temperature reached 100, which suddenly caused some serious cold sweats.  But then my fever broke, and disappeared.
– Right now, temperature now seems to be getting back to normal!  And I’m feeling… well… could be worse!
So that last whole thing was what happened to me while I was ostensibly in the middle of explaining to you what was happening to me.  And that’s not even getting into how I feel about all of this.
Wait, now I get it.

“Hey Chad, how are you feeling?”

Fine!