“Even if I’m dead, if you’re seeing this, I had a happy ending” From the notebook of ‘Charles Peacock’ Six years ago an email appeared in the inboxes of many people who knew and loved Chad Peacock. The first line … Continue reading
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…
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.
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:
(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…
One of the nifty features of writing a blog (instead of a book, or a journal, or a fortune cookie fortune) is you can see exactly how many people are reading it, where they’re reading from (I know you’re on your phone, on the toilet, and I’m OK with that), and in some cases you can even figure out why they’re reading it.
There are probably two main “why’s” that lead people to this BrainChancery: either they know me and they’re curious how (or if) my brain chance is developing, or they don’t know me and they’ve come across this blog somewhat unintentionally as a result of some (generally worried, and probably late-night) google searching.
Which leads me to the nifty part: the WordPress blogging software actually shows me a list of the most popular (and unpopular) search terms that randomly lead people to this blog. Some are questions, some are (interestingly) statements. I’ve been compiling a list of some of my favorites, and I’d like to share them with you. I would also like to respond to and if possible answer some of them, since it’s clear that many of the virtual people who e-arrive here are looking for real answers. Real answers about BRAIN CANCER!
So here are some of the exact search terms (word for word) that people have typed into computers and as a result have been delivered to my BrainChancery:
– “How do i know if i have a tumor in my head?”
Great question, Todd from Poughkeepsie. Simple answer: find a machine (magical or otherwise) that can show you the insides of your brain. I recommend an MRI machine (not a shaman). Failing that, get someone to actually look inside your brains by cutting open your skull and digging around in there. (NOTE: The first method has fewer side effects, but the second might, depending on the results of the MRI, be required anyway. Also don’t use a shaman for this second part.)
– “What does it feel like when you have a tumor first growing in the brain”
Having never had a tumor that wasn’t first growing in the brain, I can’t really compare. But I can still give a definitive answer: tumors take up space, and your skull is already pretty crowded with brain. As a result, having a tumor in your brain feels like having too much stuff inside your skull. Literally. That’s what it felt like for me, at least. It gave me a headache.
– “What do you feel like when you have a brain tumor?”
Similar to the last question, but the answer is much more complicated. What do I feel like, having a brain tumor? Sometimes, pretty amazing. Other times, kinda horrible. In that sense not that different than what I felt like when I didn’t have a brain tumor– just much, much more intense in both directions. There’s intense pain, both physical and emotional, but there’s also a lot of other intense stuff that ranges from the totally trippy (like my smoothies) to the absolutely deliriously wonderful (like my life, and my friends, and this world). That’s how I feel, at least. I don’t know how you feel. A lot of times I feel sleepy.
– “Pretty sure I have a brain tumor.”
Pretty sure you don’t. Then again, what the hell do I know. I don’t even know you! Which brings up a better point: What I do know is that if you’re telling Google you’re pretty sure you have a brain tumor, you’d probably be better off having that conversation with a human being. Ideally, a medical professional. Failing that, at least a friend. I mean, what kind of response are you looking for when you tell a computer you’re pretty sure you have a brain tumor? For it to respond “Nah, bro, you’re totally fine.” Or “Yeah I totally think you do too. You’re gonna die in like five minutes, so hurry up and look at some porn or pictures of kittens.” (The computer will of course already know which you prefer, and will give the appropriate response.)
– “Passing out brain tumor”
I hope by that you mean you’re passing out a brain tumor (in the way that one passes gas) and not passing out because of a brain tumor. If it’s the latter, you’ve got more than flatulence to worry about.
– “How can I know if I had a brain cancer?”
If you had a brain cancer, there are two options: A) you’re now dead, and how are you accessing the Internet from heaven? Or B) you somehow weren’t paying attention during those 12-36 months of surgery, radiation, and chemotherapy that made the aforementioned brain cancer go away. Actually, there is a third option: C) Your awkward grammar and verb tenses could very well be a sign of some kind of cancer of the brain.*
*NOTE: I’m totally kidding, and at your expense. But you probably don’t have brain cancer and I do, so just laugh and let me get away with this one. Just this one time. Sorry. Thanks.
– “i fink ive got a brain.tumor”
I fink you do.too. And I wish my email address was firstname.lastname@example.org. I’m sorry, it’s so tempting to keep making fun of the phrasing of some of these questions. But we’re talking about BRAIN CANCER for godssakes, and that’s not funny at all! I’ll prove it. Let’s continue… (I swear these are all 100% real…)
– “I’m turning 37.”
You are? Congratulations! And you probably don’t even have brain cancer! More importantly, though, why are you telling Google and not your friends? And why for the love of god did you click on this blog amongst all the other results you were probably given?
– “Something ugly in my brain”
Ugh. You and me both. All of us, in fact. Here’s just hoping that YOUR brain ugly consists of imaginative thoughts, not malignant cancer. If it is imaginary ugly, however, do us all a favor and keep it to yourself. If it’s cancer, do yourself a favor and deal with it as quickly as possible.
– “Chan Ping Hong”
Since I don’t think the Hong Kong Yelp has reviews for neurosurgeons, I’ll put my two cents on record and give old Jonny Slow Hands a four star rating. I trusted him with my brain, and he didn’t let me down. Plus, his cell phone ringtone was a Bach concerto, which I feel like is a good sign. He also has very soft hands. Do yourself a favor and don’t shake them too hard if and when you meet him.
– “chad peacock brain cancer”
That’s me, forever immortalized (as far as the Internet goes) as good old Chad “Brain Cancer” Peacock. Hooray for that. Thank god I totally made my mark on the world by getting cancer in my brain.
– ” ‘get to see the light of day’ meaning”
How on earth this search led to my blog I have no idea. But I found it kind of beautiful that it did. There are lots of things we hope get to see the light of day, and lots of things we hope never do. If you do really have a brain tumor, I hope it gets to see the light of day. Because that means somebody took it out of your head. And trust me, it’s better on the outside than on the inside. If your brain tumor gets to see the light of day, you might even be able to laugh about it one day!
Speaking of laughing about brain cancer, that’s it for “Hilarious Brain Cancer Search Terms Of The Day”. Before I sign off though, I would like to mention that all of the above is not intended to make light of the probably slightly (or less than slightly) terrified people who are searching the Internet trying to figure out if they have a brain tumor.
It’s a scary situation to be in, and if you suspect you’re in it I do have a bit of advice: the Internet won’t help you much, but doctors will. And above all, remember that you’re lucky that it’s 2013 and not… well, any of the hundreds of thousands of years preceding this one when a human being would just die before even being able to think about asking anyone what the hell was going on inside their head.
So even if you do have a brain tumor, consider yourself lucky. You’ve made it this far, and that’s not bad. Not bad at all. Congratulations!
Oh and one final thing: It’s pretty cool when you actually HAVE the thing that dozens or hundreds or thousands of paranoid people out there in the world constantly secretly worry is afflicting them. Just think of all those hypochondriacal human beings who are constantly saying or thinking “Oh my god I bet I have a brain tumor, I bet that’s what it is!” And most of them don’t even have a brain tumor.
But I actually DO!
And if you do too, well then that’s really something, ain’t it?
Just think of the odds!
The original purpose of this blog was to keep everybody up to date and informed about my surgeries and treatments (voodoo and otherwise), but I’m afraid the length-density of my posts and all the crappy jokes have tended to bury the pertinent information. Sorry about that.
So here, for clarification purposes, is what is happening right now, and what will continue (hopefully) to happen. With bullets and boldface type!
- I take 4 chemo pills 5 days out of each month to (hopefully) arrest the growth of whatever cancer is still in my brain. The chemo is called Temodar. It doesn’t make me barf. (Except that one time last week when due to some remarkable coincidence I got food poisoning the day before I started my chemo. Then it makes me barf. Real bad. Even worse than the food poisoning did. Thanks Hamburger Hamlet XP!)
- So it’s like I’m on the pill. Except instead of birth control pills, I’m taking pills designed to prevent the undoing of my own birth. Is it working? Only chance knows. (Most likely and terrifying scenario is it’ll work for awhile, until it doesn’t anymore. Then we either find something new that works, or the chance wins.)
- The chemo also can make me a bit tired and/or spaced out. But really, it’s not the worst thing in the world to have a crappy week once a month. Hence me calling it “my period.” (While I like this joke, I actually feel like it’s insulting to women who go through much worse than I do every month. God bless you ladies, I feel for you.)
- In addition to the chemo, I get a couple of shots in my armpit every month or two. This is the clinical trial vaccine (I posted a video about it that gets into more detail). This thing is really exciting. It’s state of the art anti-chance medicine. But…
- I may or may not be getting a placebo instead of the real vaccine. Thems the breaks.
- I get an MRI every two months to see if the cancer is spreading or staying put. Spreading = bad. Staying put = good. My next MRI is December 4th. There will be one every 2 months after that. Which means every 60 days. Which means every 8 weeks. (If I’ve asked you not to keep asking me when my next MRI is, I’m sorry– it’s just one thing that I try really really really hard not to be thinking and worrying about every single moment of every single day. It’s like a weird trial date, when what is on trial is whether you get to keep living or not. Best not to worry about it since the outcome is not really under your control.)
- Speaking of living though, I’m doing it and it’s going great! Working again, enjoying my days, and trying not to just have cancer on the brain 24 hours a day. (Which can be exceedingly difficult though, seeing as I literally have actual cancer on my actual brain.)
- But hopefully not for long!
On that final note, this is how weird my life has become: the best news I heard last week was that a guy died of heart failure.
How could that possibly be good news?
I’ll tell you! You see, said guy was diagnosed with brain cancer some time back in the early 1980s. Which no matter how you bend it, was at least 30 years ago. 30 years ago!? He died of heart failure at 70 something years old?! Hooray!
Dying of heart failure sounds like pretty much the best thing in the world to me right now. I’m totally goddamn sure that my heart will last at least another 30 years, so if that’s what takes me out I will be a happy, happy man.
Gotta run, I’m going to the flower district. This time I’ll keep my phone in my pants pocket.
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.
And that is the only reason I have health insurance right now.
The Affordable Care Act is currently in the process of saving my life. So you can imagine the joy and profound sense of hope that I felt this morning upon hearing that the law was upheld. I began to cry, in fact (and amazingly) only the second time that has happened since this whole brainchancery began nearly three months ago.
That isn’t to say I’m not a man who cries– I think I cried four separate times during Toy Story 3. I cry all the time. I cried when the Eagles went to the Super Bowl. Not won it, went to it.
Anyway I’ve actually been wanting to mention the other time I was brought to tears from the brain chance, but I hesitate to do so now for fear of distracting from the topic at hand and minimizing the moment itself. Ah fuck it, here goes anyway:
One of the most amazing moments of my life occurred alone in my hospital bed in Hong Kong, shortly after my surgery. I’d opened my laptop for the first time and was pummeled by this flood of messages from seemingly everyone I’d ever known, every one of you expressing hope and friendship and confidence and love and so much care that I just totally lost it. In a good way. In the best way you could possibly imagine. I’d never felt less alone in my life, and there I was, thousands of miles from home, with a giant hole in my skull, feeling happy. As happy as I’ve ever been. I wept like I’ve rarely wept, the tears streaming down over the biggest smile I’ve probably ever mustered.
And then I wrote this:
“To wake up feeling so loved by all of the people in the world that I love so deeply and so dearly is the best gift I have ever been given in my entire life. Thank you, my family, my friends… You mean everything to me. I am overwhelmed with the joy you have brought me.”
I am still overwhelmed. And it is for this very reason that I’m not sure I’d take back getting brain cancer if I had the choice. It’s hard to reach a point where you feel the confidence that you really are not alone in this world– I think a lot of us struggle constantly with that idea. I know I did. But I don’t anymore.
Because of all of you, I know I’m not alone.
(Insert 400 foot tall thank you card with live fireworks here for every last one of you. And my undying affection and devotion, wrapped with a nice crisp ribbon. But not by me, I’m a crappy wrapping paperer.)
But wait, weren’t we supposed to be talking about politics?
I guess that story kindof dovetails with what I was originally getting at: the idea of care and compassion and the unexpected and utterly overwhelming effect it has had on me in both of these situations.
To feel that kind of care and compassion when you absolutely need it most, when you just can’t do it by yourself, when you really need other people to lift you up, is one of the most profound things I’ve ever experienced.
And this is the point that utterly too often is being missed in this entire debate over what law or system is right and who’s gonna pay what and tax tax fear fear tax: the point of this law is to help people. The point of our government is to help us live better lives. And the best way — I would argue the only way — for that to actually happen is if we actually allow ourselves to believe that it is possible. And if we take that belief, and allow ourselves to try.
So to hell with cynicism about government, about politics, about the left or the right or the top or the bottom. To hell with cynicism forever. Brain cancer to cynicism! If we don’t believe we can do anything good, if all we focus on is the fact that we’re arguing and divided and that it’s all gone to shit and there’s nothing we can do, then what good is going to come of us?
This law was made to help people, and it’s already helping a lot of people. Let’s keep trying. Let’s see if we can make it even better and help even more.
As my BFF BF said:
“We must, indeed, all hang together, or assuredly we shall all hang separately.”
I totally wanna hang with every last one of you.
And with Barrack. Cuz despite the raging clouds of cynicism spiraling and swirling over our heads, I can tell you one thing that I know from experience to be true:
This man actually cares.
And I can’t thank him enough for that.
I’m not really returning to Kowloon, I just wanted to follow the crappy movie sequel title format for this post. Speaking of Kowloon though, I just remembered that most of my original brain tumor is actually still over there, in a freezer somewhere. I know what you’re thinking: there’s a slab of pink popsicled peacock cancer in some back alley cooler guarded by an elderly Chinese man in a wife beater and a lucky crippled chicken named Xiuen Zo. But that’s not the case. In reality, my frozen brain chance is actually sitting in a futuristic biostorage facility, counting the days on an abacus and wondering what went wrong with our relationship (you gave me a headache). I predict that in the future, it will be used to make iPads.
But anyway, back to the original question– how’s the chemo/radiation going?
Well I’m tired most of the time.
And my hair’s falling out.
And the hair that hasn’t fallen out I’m pulling out while thinking about the big Supreme Court decision tomorrow morning that is very possibly going to rip the health insurance that has truly saved my life right out from under me (more on this, undoubtedly, tomorrow).
Other than that, things are great! (He said with a slight hint of sarcasm.) I seem to have gotten the nausea down to a tolerable level, which is a big relief. At the same time, I’m sortof spaced out and have this light flu / hangover feeling all the time. Which isn’t really all that bad, but I’ve definitely reached the point of really looking forward to this shit being over (two and a half weeks to go, plus a few days on the end to let all this crap seep out of me and create a superfund site at 138 North Wilton Place. At least the pool will probably start glowing). Anyway I can’t wait to just have a day where I feel fucking normal again.
As far as the hair, if anything I find it kind of funny. I don’t know why, the spotty bald look makes me smile. It looks like somebody cut my hair with a hot dildo.
Or maybe it’s because all these years I thought I’d inherited my grandfather’s hair on my dad’s side (which was shining thick and white like the mane of a two headed unicorn) rather than my maternal grandfather’s hair, which you’re supposed to inherit, and which was for the most part nonexistent.
Ok so Sir Ben Kingsley isn’t really my maternal grandfather, but you get the idea. He was a bald guy. (And he died before I got to take a rad picture on the beach with him.)
That Kingsley’s moustache is impressive… I actually have less hair on my head right now than that tiny little bastard has on his face.
Heeeeeyyyy wait a sec, I just thought of something! Now I can blame my crappy patchy Weird Beard on the whole brain cancer thing! That’s why I’m enjoying the spotty haircut, because now my head finally matches.
See, I knew there was a good reason for all of this happening.
(speaking of haircuts, I just posted a new/old post showing my post-op StapleHead, so if you’re feeling up for it, click here)
Ten days in and things are… well let’s just say that I hope it’s doing something to the brain chance, cuz it’s definitely doing something to the rest of me.
THE RADIATION is fine… if anything it’s nice to be strapped down to a table for 10 minutes every day without any phones ringing and nothing to do but think. The ozone smell drives me a little bonkers (see this post for an explanation), but I’ve learned to breathe through my mouth right at the moment when the linear accelerator turns on. Anyway, it’s kindof rad that I’m hooked up every day to something that has a “linear accelerator.” (thanks to Howard for digging up an answer to what the weird smell is.)
THE CHEMO is another story. (I’ve decided to pronounce cheh-mo, rhymes with demo, since keemo just sounds too creepy and makes people think of IVs filled with hydrochloric acid).
It’s not all that bad, but it’s kinda bad. What it does is basically produce a light but perpetual feeling of nausea.
You know that feeling that you get like waaaaaay in the beginning of getting sick, when you feel a little dizzy and your mouth maybe starts to water and you think “oh, weird, am I going to get sick?”
It’s like that, just all the time.
In addition to the Temodar pills that I take every night (that’s the che-mo), they also gave me Zofran, which is supposed to control the nausea. I’m not sure it does, but then again I’m not sure it doesn’t because I’m afraid to not take it.
I spoke with my doctor yesterday, and he said there are a few other things we could try to control the nausea, one of which was medical marijuana. I don’t really feel like being stoned all day to be honest (feeling clear headed and normal is the most wonderful feeling in the world to me right now) but I’m tempted to get a prescription just because I love the idea of having pot prescribed by one of the top Neuro-Oncologists in the country. Most people who walk into the weed shops have prescriptions from Doctor Nick, but mine would be legit. You know, from Doctor Who. (Incidentally, if I haven’t mentioned this, my doc’s name is Dr. Hu. Pronounced “who.” Which is so bitchin I can’t even deal. The ringtone on my phone when he calls is this. He fights my brain chance with a magical space traveling phone booth.)
So to answer the question, it’s going OK. Kinda sucks, but could certainly be worse.
Relatively uneventful so far, which is to say: good I guess! No ill side effects at all (aside from the fact that Kuato has shriveled up and fallen off my chest– I was starting to grow fond of the smelly little bastard. Plus he gave really good tips on the ponies at Santa Ana).
Hopefully it’s working, but we won’t really know anything about that until after the 6 weeks of treatment are over (more on this later).
For now my days are relatively normal, aside from two things:
1) I take a pill every night before bed, which so far hasn’t really made me feel weird at all.
2) A quick drive over to Cedars Sinai every afternoon, where the incredibly sweet technicians hook me up to this thing:
(click on the pic to see full size)
The futuristic space mask is this thing they made a few weeks ago. It starts out as a flat plastic sheet, which they heat up or boil or braise or something to get it soft, then stretch it out over your face. It then dries and hardens in the exact shape of your face, and when you go in for treatment you lie down on this emerald encrusted golden TemPurpedic bed (this being Cedars, after all)* and they use the mask to click your head into place so that it doesn’t move at all during the radiation blast.
The green lines you see are these trippy lasers that shoot out of the walls, which I think the machine uses to pinpoint where your head is and where it should be delivering its radiation blast. They’ve done all sorts of computerized imaging of my brain and the tumor socket, which allows them to beam the radiation specifically (and exclusively) at the place where the cancer is / was.
DO YOU FEEL ANYTHING?
Nope, nothing at all.** It doesn’t hurt, it only takes about 10 minutes, and you wouldn’t even know anything was happening if the sweet technician ladies didn’t run for their lives out of the room right before the machine turns on.
Which brings me to one final detail…
Someone asked me why I said I would never do radiation again after this 6 week jaunt: the reason, as I understand it, is that they know how much radiation a person’s body can tolerate safely, so what they do is try to nail the cancer with everything they can right in the beginning, all at once, in an attempt to weaken and kill it as quickly as possible. This is why I’m doing the 6 week chemo / radiation regimen. They’re throwing everything they can at it, including the kitchen sink.
And since I’ve already had two brain surgeries, the sight of a 40 pound ceramic American Standard flying at my head isn’t really something that bothers me all that much.
So… it’s going well, thanks for asking!
*The bed isn’t really that ornate — although come to think of it it IS so technologically advanced that I bet it costs more than an emerald-encrusted TempurPedic. It really just looks like a flat glass bed, as if you were lying down on an electric stovetop. Which I guess in a way it is. Oh small side note though: the patient rooms at Cedars have new beds that actually ARE TempurPedics, and they’re insanely comfy. Which is the only reason I stayed in the hospital the night after my second brain surgery. It was just really comfy (Ok, that and the free morphine shots).
**One thing that I have noticed is this faint odor as soon as the machine turns on. The technician said that only some people can smell it, and I think this officially confirms that I’ve inherited my mother’s nose. Well at least the insides of it– the outside structure clearly came from my father. (I need to point out here that the white plastic mask is WAY pointier than CP Senior and CP Junior’s noses.) Anyway it’s really odd, though not unpleasant at all– the odor clicks on the instant the machine goes on, and it smells a bit like… burnt air or something. Or ionized air. As soon as the machine shuts off it disappears instantly. If anyone has any idea what the hell this is, please let me know and I’ll give you 15 minutes of free radiation therapy using my radioactive nose nipple.
I’m doing great, thanks! How are you doing?