Time To Get RAD Again!

…and by RAD, I of course mean… RADIATION! (no snowboarding for me this season, most likely:()

Do you remember on my first blog post where I wrote about radiation and mentioned that I had rang a ceremonial bell with the ‘onward’ sign next to it….signifying the last of my radiation back in October?….and that I’d maxed out on the amount of radiation that I’d do because any more than the 6 weeks and you’d be frying too much of the good parts of your brain? Well, “the typical is atypical,” when it comes to brain tumor cases, as one of my doctors once told me – and “you’re not standard in a lot of aspects of your case”, as another did.

If and when a new tumor grows, it usually ‘recurs’ in the same spot as the first one….so that one-and-done radiation approach seems to apply in most cases. However, my latest tumor could best best be described as a ‘distant recurrence’. While it’s on the same side of my brain (right), it’s further toward the back of my head. The first tumor was on the Temporal lobe. The most recent bastard was on the Occipital lobe.

So, guess what?….they CAN do radiation as it turns out. The two areas are apparently far enough apart to warrant it, too. And that radiation is starting tomorrow. Maybe I didn’t ring the bell loud enough the first time?

What they are doing this time is called SBRT, which is a powerhouse, supercharged, supertargeted radiation treatment.

Basically, I’ll be getting the equivalent of the 6 weeks of radiation that I did before, but now in 5 treatments instead of 30. They super-blast you, I guess- but there is theoretically less radiation ‘spill’ to the areas that they don’t want to hit.

Because of the intensity, they spread the treatments out by a few days each, so it’s not all happening on consecutive days this week, but it will all be going down between Jan 9th (tomorrow) and Jan 22nd. Specifically:

  • Tuesday 1/9/17
  • Thursday 1/11/17
  • Tuesday 1/16/17
  • Thursday  1/18/17
  • Monday 1/22/17

Since the radiation is supercharged, the main concern for me during this time is that the radiation side effects can be supercharged as well. The term that gets thrown around a lot in this regard is ‘radiation necrosis‘. You don’t want that. That’s when the normal brain tissue gets angry and can cause symptoms like worsening headaches……vision changes (mine may get worse before it gets better), etc.……The side effects could potentially even cause increased risk of seizures, but that’s unlikely for me given the medication I’m on-so I’ve been told.

The main problem is swelling. When it’s inside your cranium, there’s no place for swelling to go besides squeezing your brain and skull, as far as I understand it. The doctors try to mitigate this swelling mostly with the aid of steroids, but there are other drugs such as Avastin that they’ll put me on if they have to. Avastin has it’s own set of side effects, so i’m hoping i can avoid it. Since they just took a grape-sized tumor out of my head, in theory there is a grape-sized pocket in there someplace between my brain and cranium where some of the swelling can go.

I’ve been told (by one of my actual doctors) that sometimes it’s ‘freaky swelling’….and if it’s really robust, its enough to shift your brain down a quarter of an inch. That’s called ‘midline shift’. You don’t want that.

I’m also going back on the chemo drug (Temodar) to coincide with the radiation. The chemo pills are going to be a way bigger dose than before, but the thinking/hoping is that i’ll tolerate it well, as I did on the first go-around.

I’m also going to be doing Hyperbaric Oxygen Therapy on every day that I do the radiation, to hopefully help mitigate the radiation necrosis. That starts tomorrow, too. I’ve never done HBO Therapy before, besides watching Game of Thrones and Curb Your Enthusiasm-so it’ll be interesting I’m sure. I’ll let you know.

In peparation for this SBRT radiation, shortly before the end of the year I went back in to ‘Radiation Medicine’ at OHSU for a prep/simulation appt. where/when they got it all set up. My old mask was/is too big for me now, and so they made me a new one. Mask 2.0! Granted, I’ve indeed lost a bunch of weight, but I didn’t know your head could shrink! I mean sure, my current lack of hair up top reduces my bulk there a bit, but maybe I’ve also lost bulk in my face? Did I have a fat face before? Well, if I did-I don’t anymore!

Radiation Mask 2.0

As further preparation, they also needed new baseline blood labs and new brain imagery which is more recent than the post-op data they have on hand from mid-December-so I did a blood draw today and….wait for it, did yet another MRI (yesterday)!

I only had to do the one MRI vs. the 3 I did in November for the research study, and it was pretty painless and uneventful- with the exception of the revelation that the ‘MRI4’ room at OHSU has music capabilities! I’ve had no less than 10 MRI’s on this machine, and yesterday was the first time anyone ever offered the music headphones to me! That would have been nice to know 6 months ago, so that I could have drowned out all of those bleeps and bloops and killed some time rocking out instead of breathing and counting numbers or whatever I do. Amazing discovery!

It was great having the music yesterday to help pass the time, and also a perfect opportunity to test the old noggin’ for any memory deficiencies. Turns out, I currently have an At-Least-9-Song-Title memory capacity. In order, here’s what I heard:

Stairway to Heaven – Led Zeppelin
Night Moves – Bob Seger
Sympathy for the Devil – The Rolling Stones.
Pour Some Sugar On Me – Def Leppard
Free Fallin’ – Tom Petty
Bad to the Bone – George Thorogood And The Destroyers
Wanted Dead or Alive – Bon Jovi
Black Betty – Ram Jam
Shot Down in Flames – AC/DC

I guess it’s Pandora that they use at OHSU, so the rock and roll station choices that I was given were either ‘classic rock’ or ‘today’s rock’ (or something along those lines). I chose ‘classic rock’. Can you believe that Pour Some Sugar On Me is considered Classic Rock? Damn, I’m getting old.

Anyway, I was impressed with myself (and my brain)for remembering all of the songs, even after potentially getting thrown off my game before having a chance to write everything down since they needed me to fill out some hospital paperwork for about 5 minutes after the session before I could leave.

So, I guess I’m all set. I’ve got my mask. The hospital has my latest images and my new baselines so they can track how things change between now and my next MRI, which will take place approximately 1 month after this business ceases on Jan 22nd- (on or about Feb 22nd, I would guess).

So that’s gonna be pretty much the rest of my month. 5 treatments and trying to stay healthy. I guess, the side effects can appear anywhere from 1 to 4 months afterwards, so who knows when we’ll be able to fully put radiation in the rear view mirror.

As my mom usually asks…”whats the best possible outcome of this next phase?”….. what are we rooting for?

Here’s what we’re rooting for:
Limited side effects overall.

    • No hardcore headaches.
    • No nauseousness or puking.
    • No fatigue.
    • Feeling good enough to resume my lap swimming on next Monday, Jan 15th…which is the date that my neurosurgery team has already blessed -based on the good healing to-date of my most recent incision.
    • No further hair loss (It’s actually growing in a bit now, and it’d be nice to keep what I’ve currently got).
    • No seizures.
    • No worsening on blood counts.
    • No need for Avastin drug.
    • No steroid ‘roid rage!!!!
    • No more weight loss.
    • No worsening of vision (could I perhaps maybe even get some more improvements in vision? (I seem to be making a bit of progress on that front)).
    • A ‘normal’ neural exam once radiation is complete, which does not reveal any neurological defecits.
    • An unchanged MRI image on or about Feb 22nd-ish, showing no new tumors or lesions.
    • An at-Least-9 ‘Classic Rock’ Song-Title memory capacity during my Feb 22nd MRI.
    • Feeling good enough to go to the Blazers/Suns game with my siblings on Tues Feb 16th.
    • Feeling good enough to take my wife to the Queens of the Stone Age concert on Friday Feb 26th.
    • Limited need for my friends/family to worry about me.

Is that too much to ask? I sure hope not.

Will keep you posted on progress.

Best,
TC
xoxo