It seems that pressure has been a recurrent theme around this Cancerful brain lately– and I’ve certainly been feeling a lot of it– physically and emotionally and, well, spiritually I guess. But let’s start with the physical pressure, as that’s the easiest to explain, and will also give me time to warm my brain up to get around the more philosophical stuff.
PRESSURE POINT #1: WRITE!: A lot of you, a surprising amount of people in fact, have egged and nudged and prodded and gently reminded me lately to do exactly what I’m doing right now, which is to update this blog. I sincerely thank you for this. If you were one of the eggers or nudgers, please believe that I appreciated and do still appreciate the eggy-nudging. It shows me that people care what I put down here, and that people care about and are following this Cancerful Journey, which means a lot to me.
It’s incredibly touching–and humbling– to have someone look at you and plead for you to tell a more of your story, a story that’s normally just circling around in your own confused head, feeling like a struggle that is nothing but your own, that no one else could possibly understand. So having you understand parts of it, and (even more shocking!) actually wanting to hear more of it, makes me feel far less alone with it. And this is a big fat Cancerful story that I’m carrying around and living in, so it’s really nice to not have to do that all on my own from time to time.
Also since I am a writer and this occupation usually comes with a notorious level of foot-dragging, the nudging that I’ve been receiving as of late has also provided enough of a gentle kick in the ass to get me around to finally doing what I am doing right now, which is writing. Which already feels good, two paragraphs in.
That’s the sound of some of that pressure being released! So that’s nice, already. So thank you. So here we go. We’re already going! I’m writing! Pressure gauge is coming down!
PRESSURE POINT #2 — HYDROCEPHALUS!: This is the physical pressure that I said I would start with, but didn’t really start with. You see, I am suffering from too much pressure inside my brain. Literally. And there’s even a name for this condition, and that name is “hydocephalus.” I think I’ve mentioned this before, but since (at least) my surgery back in June, when I had a small bit of recurrent tumor resected and (far more dramatically) was the first human being on Earth (or anywhere else for that matter) to have a genetically modified cold virus injected into his brain, I’ve been having this internal brain-pressure problem.
Since that last surgery (I think it actually may have started before then– we can’t blame the cold for everything– but as you will see we will blame it for a lot) my brain has been producing too much cerebral spinal fluid (CSF). Either that, or my brain has not been disposing of extra CSF as quickly as it should, or normally would. The result is basically too much stuff squeezed inside my one non-expandable skull. And the result of that has been… well, a lot of stuff, but primarily an annoying and ever-present headache. Not the worst headache ever, but one you’d rather not have. Sol, interestingly and surprisingly enough, the last 5 or 6 months of my medical treatment have actually been geared primarily towards solving this hydrocephalus problem. Which is kind of a good thing, since the cancer itself, aside from those tiny spots that appeared on my spine, has been relatively inactive and unscary. So that’s good. The bad thing is this CSF situation has been a real pain in the ass (brain) that it would be nice to not also have to deal with. But we’re dealing with it. And it seems like we’re making progress. So let me explain a little bit more…
The hydocephalus was (you may remember, if you saw me at that sushi place in Little Tokyo in October) why I had CSF leaking out of the side of my head for a couple of months. Gladly, that has stopped. And I (nor you) no longer have to wonder what cerebral spinal fluid tastes like. The answer is it doesn’t taste like anything. It’s actually less offensive than sweat (although a bit more disconcerting to have pouring out of your face, especially when you’re eating miso soup and your shirt collar is starting to look like you’re either really nervous or you just came in from a rain storm.
Part of the reason I haven’t been writing (or doing much else) lately is that I’ve also been, since August, on a bit of an in-and-out of the hospital merry-go-round. Which has been really annoying, primarily because prior to this Big Pressurized Brain Interruption, things were going pretty great with my Totally Cancerful life. I had (still have) a wonderful mission, and was getting a lot done, and was feeling pretty well, and was (still am) extremely grateful to have such a mission, and to feel good enough to be pursuing it– in fact, extremely grateful to be able to to be doing anything at all. This is really, really lucky.
So things are going great, but then… I randomly get a crazy headache and a fever and I pass out and I wind up in an ambulance. And two weeks later I emerge, knowing the names of a lot more neurologists and Infectious Disease specialists than I did before, at various hospitals on the east and west coasts. Nice people, all of them, and extremely kind and helpful and knowledgeable, but I would really like to have just stuck with the mission I was on. It was going really great. I didn’t particularly need to stop and suddenly become an expert on all sorts of new types of brain ailments– the brain cancer was enough.*
*Although, truthfully, I (very luckily) find the medical / biological side to all of this stuff that has been happening to me endlessly fascinating. Which has really been helping me get through all of this– it’s like I’m enrolled in a free pre-med crash course with life or death stakes that’s happening inside my own head, while I use that same very head to process and learn ] it. For me, this part of the brain cancerful journey has been really neat. I’m just lucky to be a somewhat insatiably curious person, and even luckier to have had doctors who are patient with a patient who likes to play with the doctors on their turf. Which in this case is my turf, i.e. my actual brain. Anyway, it’s been fun. I know a lot more about the brain, modern medicine, and the inner workings of hospital institutions now than I would ever have imagined. Oh and here’s one very tiny but important lesson I’ve learned: most hospitals have a machine that is actually called “a blanket warming machine.” If you are ever offered the product of one of these machines, just say yes. Hell, don’t be afraid to just randomly ask a nurse if there are any warm blankets to be had anywhere. The answer is usually yes, and you’re always gonna get one if it is. And who doesn’t want a warm blanket to suddenly appear out of nowhere and be draped over your lower half? One of life’s great pleasures, I say. (The bar gets lowered the more days straight you spend lying in a hospital bed. And I’ve been stringing too many of those days together lately.)
DE-PRESSURE POINT #3: WHAT THE SHUNT!?: So this particular pressure problem– the hydocephalus– is also the reason for my most recent brain surgery, which depending on how you count, could technically be classified as BRAIN SURGERY #5! Yep, I had my fifth. Sorry for just sneaking in a whole brain surgery like it’s no big deal, but it was definitely the least serious of all of them, it happened relatively quickly, and I didn’t even have to jog to the hospital for this one. I was already at the hospital. With two warm blankets already draped over my legs.
Yeah, so, a couple of weeks ago, I had a minor surgery to put a SHUNT in my brain! The worst thing about a shunt is that name– “shunt?” really? Who wants to say yes to getting a “shunt” installed in their head!? Well, I despite the name I said yes anyway, and I’m glad I did. Honestly it’s a pretty safe and ingenious solution to ridding yourself of too much cerebral spinal fluid, and aside from the decidedly bizarre-looking scars and tubes I’ve got lurking under my scalp at the moment (and probably for many years to come) it doesn’t really affect or bother me at all. It actually definitely seems to be helping with the brain pressure issue… pssssssssssssssssssss see there goes more!
I’m on a de-pressurizing roll!
So this is what my head looks like right now:
You can see the tube from the shunt starting up around my forehead. it’s basically just a plastic tube that starts up in my head, then travels down and goes into my body, draining extra CSF out of my brain and down into this mysterious spot in my abdomen that is good at disposing of little bits of extra bodily fluids. I forget what this mystery spot is called, but I swear it’s real. Basically it’s the body’s equivalent of that weird place at the junk yard where you go to get rid of your extra motor oil and bacon grease or whatever unusual liquids you need to safely dispose of. That’s what my shunt is doing for me. It sounds totally weird and gross (and kind of is, I suppose) but it’s helping. Plus, my head has taken one even more fantastic step into evil-villain territory, so I ain’t complaining about that. Not one bit.
PLUS, coinciding with the Great Shunting of 2015, I got another nifty new thing installed inside my head! This one is really cool.
DE-PRESSURE POINT #4: THE OMMAYA RESERVOIR: At some point in the discussion of all of this shunting, the point was raised that my particular brand of brain cancer is literally swimming in cerebral spinal fluid. Which is to say that all of my tumor cells are in places that are surrounded by CSF– from the original tumor in my brain down to those tiny little spots on my spine that appeared more recently, all the cancer I’ve got is and has been in CSF territory. This raises a few issues, namely:
- It could be (it probably is) that there have been and maybe still are some random tumor cells in my spinal fluid. This is nothing to freak out about,it’s just logical based on the fact that my cancer is where it is.
- It could be (it probably is) that my cancer spread to those spots on my spine by floating there in the CSF. All it takes is one cell to land in a spot where it’s able to stick), and that’s clearly what happened to me. *Reminder: those spots haven’t grown at all, and no new ones have appeared. So things there in that realm are actually looking good for the time being.
With all of that in mind, the idea was raised that it would be smart to treat the CSF directly — if we could get some chemo in there, then not only could we potentially eliminate stray tumor cells that might be floating around in the CSF, but we’d also have a far more direct route for getting chemo to the tumor cells that we already know are there (like the ones on my spine) since they are surrounded by CSF, all the time.
As it turns out, some smart guy already thought of this and came up with a fancy solution — and as I write this, I’ve already got the thing installed in my head! (It’s that bump on left side of my forehead with the butterfly needle sticking in it)
That’s right folks, it’s called an “ommaya reservoir,” and basically it’s just a little receptacle that they install under your scalp, that can be filled up with chemo (or chocolate pudding), which then drips directly into your cerebral spinal fluid.
You don’t have to do a damn thing! You just get it refilled every once in awhile, and you go about your daily routine and let the thing drip its chemo, and hope for the best!
The only question is, do you take it with the chemo? Or the pudding?
(I went for a combination of both, and so far I’m feeling decidedly less pressurized, and a lot more chocolatey. Hey and while we’re talking about pudding, does anybody have a nice recipe for home-made chocolate pudding (i.e. not in a plastic container? Please share in the comments if so! I only want the good stuff going into my brain.)
So that’s where I’m at in terms of treatment– I’m feeling relatively good at the moment, cancer seems to be on hold, everything is working, and while the headache is still there, we’re working on that. Things could be a lot worse. (I could have been told this only works with tapioca!)
DE-PRESSURE POINT #5: THE CANCERFUL FOUNDATION!: Now that I’m back on my feet and my chemo delivery system is silent and futuristic as can be, my absolute focus is getting back to all the wonderful Cancerful things I was working on before getting slightly curtailed by all these extra brain-adventures– which is to say, making a Cancer-Curing Movie, and Cancer-Curing Website, and a magical card that makes having cancer a perk!
And the only thing the Cancerful Foundation needs to make these things happen besides my fully-functioning (cheers to that!) now somewhat de-pressurized brain is… your help!
So if you feel like putting some really POSITIVE pressure into the sails of The Cancerful, now would be a really really wonderful time to make a contribution to our proud, cancer-curing mission!
(That’s the sound of cancer-curing dreams coming true!)
Thanks for reading. Things are good. I’m as cancerful as ever. And it turns out that chocolate pudding is even more delicious when you process the flavor directly through your cerebral spinal fluid… 🙂