Radiation....I've been Zapped

I guess I'm gonna get real here!  Pictures and all! 

Here's what they found on my MRI - I have 2 larger tumors in my head - right around my occipital lobe - which is why I'm having these wack-a-doodle vision changes - 3 smaller ones near the front/top of my brain - and 12  additional "tic-tacs" throughout my head!  For a GRAND TOTAL of 17!!!!   - and that's just what they can see!!!!  Metastatic! Micro cancer cells being sprayed around my body and sticking wherever the FUCK they want. - Like my brain.   I love my brain!  I love my creativity, and logic, and dreaming, and color, and understanding how things work, and chemistry and science and complex, abstract thought - nuance - I AM A THINKER!   SHIT!  

This is just one "slice" of the MRI - showing 1 of the tumors.  - My eyes are at the top - the one tumor is on the bottom - where vision is processed.

For radiation, the Doctor originally gave us 3 options.

1. Whole brain radiation (some memory loss)
2. Whole brain radiation minus the hippocampus (a little less short term memory loss)
3. Radio-surgery - focus and target the big ones.

So, those overwhelming options get dropped - and I'm dumbfounded.  Like What????  It's like a buffet line.  What am I in the mood for today - steak or chicken?

I'm so, so incredibly thankful for Paul, and that his level head was at that first appointment with Radiation Oncology.  He's been working as a Physician Assistant for 30 years and so many of those years has been working directly in Neuro-Surgery - and taking care of patients with brain tumors.  I think they like him at SSM.  He loves his co-workers and says they all feel like family.  

Some very sweet technicians - Andrea and Ninah took me back to be molded for a face mask - where they take this warm plastic mesh that they snugly mold it to your face and allow to cool and harden.  It's so that they can lock your head and position it to the table by the millimeter during treatment. 

During this time - and I don't know if this was a professional courtesy to Paul and our family - but they came up with a plan.  I'm relaying this from Paul but he said "She's a thinker and a doer.   I'm not sure she could handle memory loss like that - especially now."  They talked about the radio-surgery - if we could target the bigger ones.  With the hopeful plan that the micro stuff can somehow be scooped up by the miracles of the Medical Oncology group (It takes longer to get all of that in place - so we're not there quite yet)  but somehow - they came up with a plan to target all 17.  I don't know if they normally do that.  Maybe they do.  But it's a lot. 

So this last week has been a series of radio-surgery appointments.   I go in.  They line me up, lock me in and lasers align my head and the table moves around, and the radiation machine moves around, and you lay real, real still and they play MUSIC - any MUSIC you want!  Which if you don't know - is a real thing for me.  This week I asked for  "Boy Genius" https://www.youtube.com/watch?v=R_lIApYxIIE - I can count off the time by the number of songs.  I'm transported away through the music.  I can get through it.   It would be so much harder without the music. I LOVE MUSIC.  

And then it's over.  And they un-lock and I stand up and walk out.  I feel so spacey afterwards - and with some of the vision changes it makes things feel a bit more spacey.  And I'm exhausted those afternoons.  And coming to think of it - most of the time - but I can't sleep.

I'm on steroids to lower the brain swelling and pressure in my head.  I'm sensitive that way - so I'm finally tapering off of them more slowly because those weird silvery oil slick streak headaches are still happening.  Paul says it's because the there's micro swelling in those radio-targeted areas for now.  But at least I'll get off of those steroids over the next couple of weeks and hopefully feel a little more like myself. 

It's true - When someone says  It's like "BLANK"...but on STEROIDS!  - it really does mean EVERYTHING is amplified.  All emotions - anger - frustration - happiness - sadness.  I've been on a bit of an emotional rollercoaster.  That hasn't been fun.

OH - and I forgot my new BIG JOKE!!!!!  I was born in OHIO - and we moved our family here in 2005.  So, do I finally get OFFICIAL HONORARY CHEESE-HEAD STATUS NOW???  - I Mean - My Brain is officially poked with CHEESE HOLES???? - Like a fine smoked, baby Swiss!  17 of them!   Gosh I love CHEESE!

And I had a PET SCAN yesterday - that's for the Medical Oncology group.  It was okay - but can you believe - I WAS NOT ALLOWED TO KNIT while I waited for the radioactive dye to spread through my body!  UGHHHHHHHHHHHH!  I just had to lay real still.  An then there was NO MUSIC.  UGHHHHHHHHHHH!  Plus - whatever that stuff they injected me with - I'm crapping my brains out now!  UGHHHHHHHHHHHH!  I know TMI and super unpleasant!

On that note- More of the boring everyday stuff to come.  

Love ya,

-L