Success! What’s Next!

So around 4AM on Tuesday morning, I woke up, put my sneakers on, and jogged to the hospital.  For brain surgery.

run map

I’d meant to run here two years ago for my second surgery, but I didn’t because I didn’t want to sweat the fiducial markers off of my head.   (These things:)

Fiducials!  (for MRI-assisted brain surgery)

Fiducials! (for MRI-assisted brain surgery)

But not having run to brain surgery was one of the very few regrets of my Cancerful years, so for brain surgery #3, I had to do it.  And to be sure that I would,  I mentioned it (subconsciously, but probably also intentionally) on this blog the other day.  And then everybody started asking me about it.  So I had to do it.  And it was only 4 and a half miles.  So I did it.

 

morning-RUN

Running! To Brain Surgery!

The streets were nice and quiet, and I listened to Rhapsody in Blue on my headphones.  Which is long enough that it soundtracked me quite nicely through the first few miles, and it even had me stomping and jumping and triumphantly throwing my hands up in the air at certain points.  And this was on the way to brain surgery.  Which was pretty cool.  So thanks, George Gershwin, 77 years later, for getting a fellow 38 year-old Brain-Chancerful transplanted Los Angelino to our hospital on time.  You never made it out, but I already knew going in (partially thanks to y0u) that I would.

Once the song was over, around mile 2.5, I called my dad in Philly and talked to him while I ran.  He told me not get hit by a bus.  I thought that was pretty funny.  And I didn’t– I made it!  And the fiducial markers didn’t sweat off either.  So that was a pretty good start.

I went into surgery around 7:30AM, under the kind and sturdy hands of the same guy who operated on my last time.  “Silly Love Songs” was again (by request) playing in the O.R. while my head was sawed open.  (Last surgery, I’d joked with him that I’d had that song stuck in my head and asked if he could remove it while he was in there, and he totally surprised me by playing it right as they flipped me onto the operating table.  I laughed my ass off as I passed out.  So this time we did it again, for old time’s sake.)

Surgery went well!  He took out all the tumor he could see, in addition to a healthy (yes, healthy) margin of regular brain tissue around it, increasing the chance of getting out as many infiltrated tumor cells as possible.  So for a recurrent glioblastoma (which is very bad) this was about as good as you could hope for it to go.

AND, while I was under, my surgeon was able to (with my consent of course) use my brain as a test subject for a pretty nifty new light-assisted surgery method they’re working on.  Essentially, it will allow them to shine a light onto your brain and analyze the reflection to much better identify which cells are malignant and which ones aren’t, right there in the middle of surgery.  Kind of like a brain bar code scanner.  Which will help them take out all more bad stuff, and leave more good stuff behind.  Which is pretty awesome.

And then, I woke up!  And (for the third time in my life) everything worked!  Hands, eyes, toes, unmentionables, and most importantly… brain!  So you can see why for me this all of this has seemed (and continues to seem) to be more magic than curse, more good luck than bad luck.  Science!  I’m alive!

Yesterday morning, I woke up again!  And I turned on the World Cup match, just in time for my surgeon to pop in and with a relieved look on his face pull up a chair next to my bed so he could watch the game with me.  And so there we sat, surgeon and patient, laughing and discussing things like soccer and what he did with his hands inside my brains a few hours ago.  So that was pretty awesome.  We’re kind of like, pretty cool friends.  (At least I like to pretend we are.)  Sure, he saves lives and everything, but…  we have the same initials!

CP & CP

CP & CP ( I was still in my underpants at this point)

But the really neat part of our post-op World Cup conversation was when we nerded out on the nifty laser-light experimental stuff he was testing inside my brain.  The technology is really good, apparently– they know exactly where they’re going with it and how it’s going to work.   They just need to work out the kinks, gather the data, and develop the best protocol.  The biggest problem they have is securing enough funding to get it from the experimental stage to a point where (very feasibly, in only a few years) they can actually be using it during EVERY brain surgery.  It’s going to make their job a lot easier.  And it will save a lot of people’s lives.  But it will cost some money to get us there.

And this is where I looked at him, and put my hand on his shoulder, and said something like “Holy shit man, you know what?  I think I might be able to help you out with that.”   See, I don’t have any money myself (hence me having to physically run myself to brain surgery 😉 ) but the project I’m working on is geared not only toward helping people with cancer laugh and sing and cry and process being Cancerful, but it will also raise money for Cancerful things… exactly like this.

So I realize, sitting there in my hospital bed, one (and this is just one!) very specific way that I could actually help my pal CP–who saves people’s lives– save more people’s lives.

So I’m glad I had this third brain surgery.  And that I woke up.  And that I seem to be as clear-headed as I was last week, when I went in for that surprising (and yet not surprising) MRI.

My brain works enough that I can keep working.  And so I will.  (I am working right now, in my hospital bed, while a nurse simultaneously checks my blood pressure and temperature.)

I have been given two years with this disease.  And overall, those two years were pretty wonderful– and difficult, and pukey, and funny, and existentially terrifying, but always rewarding.  And that is already more luck that I deserved, certainly more than I earned.

And now I know I have a least a few months until anything happens inside my head again.   Maybe more than a few months.  Maybe some years. Or maybe I’ll have to do this again for my birthday in December.

Either way, I have some time.  And I think I need to make good use of it.

I smelled about 65 roses with my sister and my mom (on her birthday!) the day before my surgery.  That was a good use of Monday.

IMG_9829

That was a really great Monday, in fact.

IMG_9840

We smelled a lot of roses.

And Tuesday turned out pretty great too! I had brain surgery– and it worked!

IMG_9913

Wednesday, I rested.  And was totally dilaudid.  And some wonderful friends came and threw me a little pizza party in my room!  And we celebrated Brain Surgery Success Number Three!

And now it’s Thursday morning, and I’m lying in my hospital bed, typing this, getting ready to check out, and wondering what the rest of the day will bring.

IMG_9907

I bet it’s going to be pretty great.  It’s certainly going to be something.

And we all know what something is better than!

 

PS:  THE NITTY GRITTY, & FOR THOSE WHO STILL HAVE QUESTIONS:

– The post-op MRI showed complete resection of the new tumor mass.  There is nothing to be seen in there at the moment, other than regular brains.  This was the case two months ago however, so it could really come back at any time.  This is what I’m living with.  This is what I’ve been living with for two years now.  It’s OK though.  I’m OK with it.

– I will follow up with my docs next week, and we will discuss the next steps.  There are other clinical trials out there I might be lucky enough to trial out, and I can always go back on the same chemotherapy (Temodar) I was on before.   But I am not at this bridge yet, so I am not really worried about it, or if and when I will cross it, until I get there.  For now, it is Thursday.

– I probably won’t have another MRI for 8 weeks, since if anything is going to grow back we wouldn’t see it on a scan until after that long anyway.

– I do feel fine.  Pretty much as I did before the surgery.  Sure, the scar hurts quite a bit, but the pain killers are doing a nice job on that.  (Yes, I will be getting a safe ride home from the hospital.)

– If you don’t think it’s cool enough that I only ran TO my brain surgery, then maybe you need to find a better brain cancer blog to read.

– Despite me feeling pretty good, and being able to laugh about this, and everyone loving to tell me “you look great!”, I still need help.  And support.  And time with friends.  So any wind that anyone feels like sending under my sails to keep me moving forward as long as possible is greatly appreciated.  It’s gotten me this far, and I’d really like to go a lot further.

Thanks for reading this.

Can’t wait to go home and see Dutch!

19 thoughts on “Success! What’s Next!

  1. I randomnly ended up here some time ago. I defenetly not know you, but still, I was thinking about you on tuesday and been waiting for this post anxously.
    There’s no clinical trial or research that proofs if sending good eneregy and thoughts is any help on cancerfull patients, but just in case, I’ll keep at it! 🙂

  2. Fuck yeah!

    I was waiting for this!

    Chad youre fucking insane and amazing, c

    On 6/26/14 11:03 AM, “the BrainChancery” wrote:

    > thebrainchancery posted: “So around 4AM on Tuesday morning, I woke up, put my > sneakers on, and jogged to the hospital.  For brain surgery. I’d meant to run > here two years ago for my second surgery, but I didn’t because I didn’t want > to sweat the fiducial markers off of my h” >

  3. I have been there since the beginning. Always with you in my heart and BRAIN Ha thoughts. I have so many memories of you as the BFS cute ,smart wise guy. Sent my prayers to you morning of the surgery. What an marvelous writer you have become. Family and your extended BFS family are so proud of you. Strength, humor, and tenacious character will keep you going.

    I’ll be the wind beneath your sails.

    Fondly, Dianne Marston Cathie

  4. O wonderful, wonderful, and most wonderful! and yet again wonderful, and after that, out of all whooping! May Thursday turn out to be even more fabulous than Wednesday, to be followed by innumerable days of wonder and delight, all of which involve your working, wonderful brain.
    Thanks for the excellent news, and great inspiration (I love thinking of you running to the hospital, Rocky-style). Love and good thoughts (and exultations that your bout with GBM is going so well) stream from the Central Coast.

  5. Yay!!!! So happy for the good outcome and great mood! Your attitude is inspiring. Post a picture of Dutch. Best wishes to you and you will continue to be in my prayers. 😄

  6. When I see a new brain chancery post on my bloglovin, i leave everything I’m doing, sit down and read it.
    (My son is still jumping around me, because i was on my way to put him to sleep when I saw a post 😀 )

    Anyway, so so glad to read that everything went so well. I was actually thinking about you and your surgery that day. Internet is a wonderful thing, really 😀

    Stay strong and cancerless, dear man.

    Greetings from Croatia!

    Petra

  7. Chad, you are quite impressive. Way to rock the 4 miler AND brain surgery in one day! I continue to look forward to seeing your movie (you are still writing your screenplay, right?). Keep on keeping on! Xo from Philly, Schuyler Nunn

  8. hello from uk and I was so amazed to see your blog. God has answered my prayers for you and SO glad you made it once again. May we have you around to follow this thing through and I wish you well for the future None of us know what the new day will bring us, we are just grateful that we also have another day. So enjoy each day as much as we can and I will carry on my prayers for you. God bless.

  9. Pingback: Back from Asia | The Everywhereist

  10. What a fantastic post, happy, funny, sad – just like life.

    My daughter has a friend who posted a photo of his family with the caption, “Life is goof” (he meant “life is good” – oops). That is her new saying when things go crazy: “Life is Goof”. It reminded me of this post.

    I will keep good thoughts flowing your way.

  11. That’s pretty kickass, running to brain surgery! 🙂
    I cry when I have to go to the dentist, so you’re clearly handling this better than I would.

    Here’s hoping you don’t have to run to surgery anymore. May your path be filled with roses and may you have the time to stop and smell as many as you like.

  12. Utterly amazing! Thank you for posting all of this! Your blog is the best, because of what you put into it – your entire mind, heart and soul! Loved seeing the photo of you with your dear mother!

  13. Ok – anything. Well, actually what I want to say is this: Wow. Wow, are you brave and articulate and funny and open to life. Just like surfing the Dharma of it all. My Mom had a GB. She was chronologically older than you, but about the same age in the other ways that I just described you. I am still trying to process what we went through. It was mind blowing and life altering…and ironically not all bad. Like you, my Mom found out some really fabulous things after her GB diagnosis that she may not have known if she had been diagnosed with something else. Her GB was inoperable – in the right temporal/parietal area. So, we (my brothers and I) knew the prognosis sucked (my Mom did not want to know any stats, so we did not tell her). People from all parts of her life reached out to her. She found out how many lives she had touched and how truly loved she was. And best of all, she was able to take it in. Mostly, she felt gratitude (maybe just a little ripped off with not being able to be a grandparent for as long as she had planned). I have read most of your blog. Your big existential and esoteric ideas are spot on. I loved your cards and wish we had them. I will pass on your blog to the people in my life. I wish you the best with all your endeavors.

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