So What’s Next?

I’m sure you’re as tired of hearing about me being tired as I’m tired of both being tired and talking about being tired, so I’ll avoid mentioning that even though the 6 weeks of chemo and radiation ended last week, I still feel like Professor Dozer Von Snoozleberg, the Arch Nap-Duke of Upper Vierzigwinks.

Oh crap, I just did it anyway.  Quick, let’s change the subject before I fall asleep!

“So what’s next on the treatment schedule?”

Great question!  But before I answer that great question, let me quickly recap the road travelled so far:

The idea behind the initial Surgery/Radiation/Chemotherapy Trifecta was to get as much of the offending brain chance out of my dome-piece as quickly and permanently as possible.  Luckily (and I can not stress how super mega double grateful I am for this) I was able to get through all that brain slicing and drugging and zapping without suffering any permanent side effects or “deficiencies” (which is what they like to call partial blindness or unplanned paralysis in the brain biz).  Aside from my slightly pretentious haircut and the massive question mark carved into the right side of my head, I’m pretty much as I was in 2011.  So, above all, hooray for that!

“But when will you know if any of that slicing & drugging & zapping worked?”

In the sense that I’m still here, it worked.  In terms of  long-term effectiveness, of whether the chemo and radiation were able to keep the chancer at bay in a more than temporary sense, there isn’t really any way of knowing that just yet.

“But when will you know?  Don’t you have like an MRI or something?  I mean, I wanna know!”

You and me both.  I have an MRI scheduled for two weeks from now, but the reality is that this first post-treatment MRI doesn’t always tell you much.  Since you’ve been bombarding your brain (and the chancer therein) with all sorts of wacky shit for almost two months, they say that things tend to appear a little bit swollen in there.  Which is to say, it might look like the cancer has grown, when all you’re really looking at is the same old cancer cells dying a wonderfully horrible and crispy death.  In other words, unless this MRI detects the presence of gold krugerrands or a small Happy Meal toy inside my skull, we’ll be happy with the status quo and the fact that we’ve gotten this far, and we’ll wait until the next one.

Speaking of which, I will be getting regular MRIs every two months or so for… pretty much forever’, to monitor what’s in there and  what’s (hopefully) not in there.  That’s just one of the things you gotta do when you get yourself a real brain chance like I went and got myself.

“But are you done with treatment for now?”

Not by a long shot.  The way that this brain chance thing normally works is that you cut/zap/drug as much of the cancer out of your head as you can in the very beginning.  It’s impossible to get rid of all of it, however– there are always going to be some microscopic cells left in there, and all it takes is one to start the whole party over again.   So it is these remaining cells that you target with the 6 weeks of radiation and chemotherapy (to wipe them out) and that you continue to target moving forward (to keep them from coming back).

“So what kind of treatment do you do now?”

As it stands now, there are two things I’m going to be doing moving forward:  the “standard care” treatment plan, as well as a relatively new clinical trial that I’m lucky enough to be able to participate in.  More on both of these:

THE STANDARD TREATMENT PLAN:

Going forward, I will be taking Temodar, which is the same chemotherapy medicine that I have been taking for the last 6 weeks.  The good news is that I’ll only be taking it for 5 days out of each month instead of every single day.  This is good because each pill costs a couple hundred bucks, and also because (despite its hefty price tag) it makes you kinda barfy and spaced out.  So I’m going to have a week each month where I feel like an alien.  I’ve decided I’m going to start calling this “my period.”

If all goes well and the brainchance doesn’t show any signs of progression (that’s what they call it when it starts to come back), I will continue on Temodar for the foreseeable future, since the assumption will be that it’s working.

THE CLINICAL TRIAL:

There are a few clinical trials out there for glioblastoma drugs & therapies, and as luck would have it one of the more promising trials is being held right here at my hospital, Cedars Sinai.  I am now an official participant / guinea pig.  Hooray!

The therapy being tested on me and a few other peeps is called ICT-107.  It is a vaccine, or immune-based therapy, which means that it’s geared toward triggering your own immune system to fight your cancer.  Awesome, right?  We are indeed living in the future.

Essentially what they do is extract a bunch of your white blood cells using a super sophisticated vampire machine, then they ship these cells off to a lab in San Francisco where somebody does something fancy to them that I hope involves voodoo or at least some amount of dancing.

All I have to do is go into the doctor’s office once a week, where they inject me with the voodoo vaccine.  The good news is that since it’s a vaccine (and it’s made for the most part out of my own juice) it doesn’t come with any nasty side effects.  The bad news is that they inject it into my… armpit.  Not the worst spot on your body to take a needle, but definitely in the top 5.  (Had my first one yesterday though and it really wasn’t that bad– I’ll take needle in the ‘pit over barfygut any day of the week.  For now I’ll get both, but thankfully not every day of the week.)

So I’ll be getting a shot once a week for the next 3 weeks, then after that it’ll change to once a month for the next year.  Then that will be the conclusion of the study, at which point they will hopefully be using me as an example of why doing fancy voodoo things to people’s white blood cells can totally cure them of brain cancer.

Wouldn’t that be swell?

Oh — since this is a clinical trial, some patients receive a placebo instead of the Real Deal.  And since it’s a double-blind trial, neither myself nor my doctors know if I am getting said Real Deal.  Thankfully, the odds are in my favor– I’ve got a 66.67% chance of getting the voodoo vaccine.  So I’m going glass half full on that one.***

*** But just in case, if you know anybody who has access to the laboratory keys at ImmunoCellular Theraputics and is up for a Fletch-style break-in where we make sure I’m getting the real voodoo juice, please contact either myself or my catburglery partner Dutch the Dog.

Round 1 Complete: Lifting The Velvet Fog

Time to celebrate with… another nap!

It gets to the point where you can’t help but find the humor in rolling out of bed, having a cup of coffee, looking outside at another beautiful sunny day, stretching your arms above your head and, having accomplished absolutely nothing and only been awake for seventeen minutes, saying “man am I beat, time to hit the sack!”

It’s a weird, preternatural kind of sleepiness, as if someone has focused some kind of futuristic energy-sapping ray gun on you and… hey waitaminute, that’s exactly what they’ve been doing.  Good thing that one of the side effects of this futuristic energy-sapping ray gun is apparently the ability to kill cancer.

Well anyway the six weeks are up, so that’s good.  They say the tiredness will start to wear off in about a week, so I’m choosing to delay any real celebration until the first day  I don’t feel like I just shotgunned a gallon of NyQuil.  I am very much looking forward to that day.

As for now, the nausea and other stuff seems to be mostly gone, which is great.  And as for the sleepiness, as I mentioned before it’s not a totally unpleasant feeling, so with all due respect to Mel Torme I think I’m just going to refer to this period of my life as “The Velvet Fog.”

As in:

Berooz and Jethro stood upon the rock at Cedars Sinai and they spake unto their disciple Charles, saying unto him: ‘The trial of forty two days and forty two nights has passed.  Soon the velvet fog will be lifted, and thou shalt emerge from thine sleep cave, seeking merriment and regular exercise and no more old episodes of The Larry Sanders Show.’  And Charles thanked them for their kindness and wisdom and kneeled before them and in doing so promptly fell asleep, drooling on their shoes.

This is true: Berooz and Jethro are the actual first names of my doctors, and both of them are biblically badass.

Anyway, now that I’m done with this round of treatment, what comes next?

The short answer is a lot, and (as you can now probably imagine) my eyelids are getting a little too heavy at the moment to really get into the long answer.  So I’ll save that for tomorrow.  The best I think I can muster at the moment is another old episode of The Larry Sanders Show.  Or maybe Arrested Development.  (I’m on a Jeffrey Tambor marathon at the moment.  Apparently he’s the spirit animal of The Velvet Fog.)

How’s the Chemo/Radiation Going Part IV: A New Hope

So turns out that subjecting yourself to an intense regimen of chemotherapy and brain radiation for 37 days straight can kinda wear you down a bit.

Not that I wouldn’t recommend it– especially if, like me, you’ve got a serious Brain Chance doing on– but my glimmer of hope that it wouldn’t be all that bad crashed and burned sometime around week 3.  The last two weeks have been pretty rough, hence me not posting on here for a little while.  Cuz who really wants to read about how sick and tired I am of being sick and tired?  I sure don’t, so I haven’t really wanted to subject anybody else to it either (other than the very wonderful friends who have been keeping me company now and then and lending an ear when I needed one.  Thanks guys.)

But hey, things are getting better.  I’m not entirely sure why– the radiation is supposed to have cumulative effects, meaning the zombie sleepiness gets more intense the longer you do it.  And that has been the case.  It’s like having that “wow, what a long day, I’m ready for bed!” feeling pretty much constantly, even right after you wake up in the morning.  Which isn’t technically an unpleasant feeling, it just gets a little old when you’d rather actually be HAVING a nice long day than feeling like you had one and need to pass out.  Plus the chemo is still pulling its weird tricks.

But wait, didn’t I just say things are getting better?  Didn’t I title this post “A New Hope?” (kudos to those who got the Star Wars reference)

I guess, in the end, I’m just getting used to it.  Getting used to feeling like evil zombie creature and not spending so much time focusing on the fact that I don’t feel 100% normal right now.

Oh speaking of evil zombie creatures!  I shaved off my hair (it was falling out in a pretty patchily weird way, figured better just to skip Cancer Head and go straight to Regular Average Bald Guy) and I have discovered that I might have a career as some kind of creepy Evil Supervillain.  So I’ve got that going for me!

Casting directors, Leagues of Arch Nemeses and out of work henchmen please take note:

The Evil Doktor Brain Chancio

The scar really seals it, although you can’t see it in this pic.  I’m trying to figure out how to get some green LEDs installed so I have this glowing  steaming green crevice in my head like a baby dragon is about to hatch from my skull at any moment and start melting faces with its radioactive fire breath.  That’ll really give those do-gooding superheros pause!

But, as usual, I’ve gotten sidetracked.

How’s the treatment going?  Well it isn’t going any worse, and I think I’ve started to get used to it a bit, so it’s going better.  Yeah.  Better.  That’s the ticket!

And… (drum roll)… I only have five days to go!

Crossing my fingers that they give out some kind of enormous gilded heavyweight boxing belt for completing this rigorous de-chancing course… and if they do that it matches the super villain outfit my mom is stitching up for me.