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?

 

21 thoughts on “An Uncommon Two Months

  1. Keep the very glass-half-full attitude and the glass might end up full! ….Been following your blog since day 1 and you’re always in my prayers. I work right down the street from Jefferson (I actually used to work there too) so if you need a coffee or flowers or a hug from a stranger or just a visitor I’d be more than happy to stop over! (Ed Berlin’s cousin by the way 🙂

  2. Thanks for the update. Sorry for all you have been through this last month. So happy the “cold” is doing its job!!! But….let’s hope you can get outside and pee soon! ;). Do tell about the two taps 🙂 In my prayers, as usual.

  3. Thanks for sharing! I aways love reading your blog- it so interesting and well written! I admire your spirit and believe we are all ONE! Your blog is never too long. Be well and just be……

  4. Thank you for the fantastic update. I’m so, so sorry it’s been such a sucky two months, but it’s pretty cool if this is your viral ninja friend leading brain cancer armageddon in your head. It sounds like the process totally sucks, experientially. But, after your white cells and their buddies declare V Day, and the pain, and fevers and barfing and bulges are gone, you will be you own personal memorial battle site, and you will be one of the guys who stands victorious, not on the field of victory, but underneath it. And, though you are underneath it, you will be ALIVE. Possibly drinking a celebratory beer in a cleverly named bar and–hell, let’s go for broke–with an awesome car parked on the curb and keys with a black horse rampant on a field of Or in your pocket. And your fabulous musical/movie will be on screens everywhere. Even if reality stops at ALIVE, you’ll still have the best battle story ever, and other GBM people will get their own viral ninjas, and if they also get the pain, fever, barfing and bulges, you know the docs’ll get better at this viral ninja thing with each encounter…

    So–go virus, and go you!

    Sending all the vibes I can muster for (continuing) superhuman strength, in spirit and body; abatement of all awful symptoms; a vibrant kick-ass viral ninja force and more excellent thinking and writing. It seems terrible to so enjoy what you produce from this experience, but every post of yours is a gift to savor. xo

  5. Love this line: “They’re writing the small print for this stuff based on what is happening to ME, right now.”

    And I definitely believe this is what’s happening in your brain. I believe these doctors are onto something with this treatment. Are they also still giving you the pills that “activate” the cold virus or did they stop that while you’ve been recovering?

    This is very exciting news, Chad! I think glass half-full is the appropriate position to take at this point.

  6. You continue to amaze me Chad and am always looking forward to your next blog!
    You are sheer inspiration, I love your attitude and your sense of humour is the best!! I do hate hearing what you have been going through. Been there myself for another reason and my case is ‘outside the box’ too! Keeps the docs on their toes amd scratching their heads!!! However, I’m with everybody else commenting on your blog. I think this Uncommon Cold is kicking some major ass in your brain and you will be better for it when it finishes it’s job and so will other Brain Cancer patients. Somebody had to be the guinea pig and this definitely had your name on it because you are one brave son-of-a-gun!!!!! (My dad used to say that lol). Please keep us posted and do tell about The Tap and The Drill….. prayers from Toronto, Canada

  7. What a great post. The last paragraph was especially prescient, and in a hippie dippy kind of sense I can’t help but think that you are completely right, that the hell the you been going through the past month is some sort of weird precursor towards permanent benefit. No one said being the guinea pig was easy, but you sure are cute nonetheless!

  8. So glad that the Uncommon Cold nor any of this other shit has affected your writing, your humor or your attitude. Well done you.

  9. So glad I clicked through on Feedly to leave a comment b/c the Babar tap/actual needle pic/pic of the docs making a dreamcatcher on your scalp didn’t show up on my feed! Also I had assumed from your last post that the cold was causing all of this so it was news to me that it was news to the docs! Maybe I should be a brain surgeon… Come ON Uncommon Cold! You can do it!

  10. Crazy brilliant writing style you have… You are Scheherazade to the GBM. This better be in the movie!!! ❤ from Green St

  11. You are very courageous Chad! As the #One you are bravely exploring yet uncharted territories of the human condition. Your resolve, your optimism, and your humor are really inspiring. I like Gail’s Scheherazade analogy too 🙂 1001 (plus some more) nights of charming and subduing the brain chance! Saludos!

    • and therein lies the gist, Jordan- you pulled a joke and a smile out of a hole in your brain. Keep it up! I think it is fair time for me to update this Bløgg – thanks for the reminder. I just may do that today. (And if I don’t it will be squarely blamed on the hole in my head. And the one in yours. You wouldn’t mind sharing would you? Of course not. I’ll just play the brain cancer card. Hey speaking of which- if you need some of those please let me know, so I can send a few over to you!)

  12. Inspirational as usual. Thanks for sharing, man. Soon it’ll be 3 years since a great surgeon sucked the crap out of my brain with a loud tube (I’m trying to think of the name of my cancer but my memory for new words sucks: it’s two words, the first one starting with A and “Alejandro Escovedo” just came to my head, a rocker I love, love, love. But he’s not my cancer. Anyway it’s a stage 3 of glioma.) For part of it they kept me awake to chat with a neuropsychologist who asked me stuff — about college, what I studied and do these days, etc., as the sucking went along. My awesome suregeon didn’t want to suck my brain away in an important place and he didn’t. He may have erased some names on files, but the files remain, and they took all the bad crap out as far as MRIs indicate so far. Anyway, when you get to an upbeat zone regardless of what you’ve been through, you inspire the hell out of me — literally. I hope you’re still feeling generally well this summer (it’s still summer!) and I look forward to your next update. Thanks again! (Of course, now I remember it’s anaplastic astrocitoma i’ve got, had – whatever – but not remembering it earlier at least allowed me to make that little joke re: Alejandro 🙂

    • and therein lies the gist, Jordan- you pulled a joke and a smile out of a hole in your brain. Keep it up! I think it is fair time for me to update this Bløgg – thanks for the reminder. I just may do that today. (And if I don’t it will be squarely blamed on the hole in my head. And the one in yours. You wouldn’t mind sharing would you? Of course not. I’ll just play the brain cancer card. Hey speaking of which- if you need some of those please let me know, so I can send a few over to you!)

  13. 1001 stories will not do, it is simply not enough, and we have already fallen in love with you so you can’t be rid of us now. FYI..your blog has been found and is becoming a mecca for many who are hanging on every word of your success. You are the fabric and future of synthetic biologics, the DNA.com of immunotherapy. Godspeed to you!

  14. Thanks for creating this blog. I’m an investor in ZIOP, the company behind this experimental treatment. It’s awesome to hear from a real patient, with the real potential to be cured. Your humor and enthusiasm is fantastic. This area of immuno-therapy is so encouraging, but it takes people like yourself to forge the way and push through the trials and tribulations… to ultimately develop the right therapy, the right delivery, the right dosing. Let’s hope this is the dawn of a new era in brain cancer treatment, where maybe recurrences and multiple brain surgeries become history. Thanks again, and I’ll be following along. Good luck!

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