Tuesday, January 31, 2012

In the details...

Hey ya'll,.
Here are some more details about next Tuesday's surgery----8AM start, 2-3 hour duration,recovery to ICU like the past two times....hopefully having the most delicious veggie broth I ever remember for dinner PA was iffy on whether I'd have Comcast Cable for Blazer games. In other news, I'm having increasing difficulty with walking and my lefty skills are not impressive.  I'm dependent on shopping carts at the store.  Next week's surgery was made very real when I signed consent forms today for a crainotomy.  The phlebotomist was sweet during my blood draws.  I'm getting A LOT of support from folks.  Thank you!  Dazed & not yet too confused  xoxoxo, -S

Monday, January 30, 2012

Date Set

I just got the call...the surgery date setting call, it will be next Tuesday, February 7th.  I'll know time, length & other details after my pre-op appointment and labs tomorrow afternoon.  So much to get together, I will be at home, as today was the first time I've been sent home from school by a principal.                                                      

Sunday, January 29, 2012

And a brain biopsy makes..three

My brain at OHSU
Greetings Earthlings--thanks to Gale Lasky, aka wondermom, for typing this update for me.

IA whole lot of magnetic attractions going on since my last post of January 4. The
NO at OHSU liked my looks (my brain) and I did qualify for the Tumor imaging
with iron oxide nanoparticles Study! On January 17 through 19th, I arrived at a
secret location (it seemed like traversing a maze to get to the spot marked X) and
dialed the special phone number to have the door opened for me and my helper
person to enter. Not to bore you with all the details, I was injected with nano
Ferumoxtran on one date and 9000 rapid fire scans were taken of my precious
brain. The purpose is to differentiate between tumor and swelling. 2 hour MRI studies!!  Results are
not released in a report since it is a trial study, but the information will be useful
for my next adventure- coming up soon, an open biopsy to find out what we are
dealing with.

I have been fortunate to be asymptomatic until last weekend, when I discovered, much to my dismay, that my left side is too weak to type with or operate the flute with accuracy.
playing became difficult and now left side walking is slower, I've got a gangsta lean and often locking knee.  Combine these features with my low vision issues and look out everyone!! I am also collecting a collection of bruises from running into things.  As you can imagine, being employed at a busy middle school is overwhelming more than ever!
I had another MRI last
past Friday will be used for the biopsy. This biopsy should let us know what is showing up on these MRIs and if....a. swelling is causing these symptoms, b. swelling and tumor growth is the cause,
or c. swelling and blood flow enhanced from rerouting by brain healing. I'm hoping for productive data from pathology as this will be brain surgery #3!  Its not an easy experience.

So after this is completed, my NO (neuro oncologist) and surgeon will decide what treatment is
required. Could be Chemotherapy. I will let you know date of Surgery, but I know
it is sooner than later. Possibly between February 2 – 9. 


I'll be sure to let you know when the big day is...I appreciate everyone's prayers & good vibes!!!
Thank you to those of you who have been generous with your time in helping me get around town and through the grocery stores in these days of no driving & new ways of being!!!

Wednesday, January 4, 2012

Winter Wonderland

Hey ya'll!  So its been a few busy months of teaching and living, and I figured its high time I let you know what's going on so we start 2012 on the same page.  In the fall, as you may have already read, I was having a case of the murky MRIs...well this has continued into the winter, with December 22nd's MRI coming up still as a Wonder, new growth or radiation effect??  Some experts go either way basically using expressions that remind me of several of the 20 classic and not always firm Magic Eight Ball answers--->
  • Signs point to yes.
  • Yes.
  • Reply hazy, try again.
  • Without a doubt.
  • My sources say no.
  • As I see it, yes.
  • You may rely on it.
  • Concentrate and ask again.
  • Outlook not so good.
  • It is decidedly so.
  • Better not tell you now.
  • Very doubtful.
  • Yes - definitely.
  • It is certain.
  • Cannot predict now.
  • Most likely.
  • Ask again later.
  • My reply is no.
  • Outlook good.
  • Don't count on it.

    As a result, I've spent a lot of time sighing, doing Netflix yoga routines, going to movies alone, and soaking in the tub sighing/box breathing and journaling in seclusion.  I've tried to stay off the google, its a scary place.  In the real world, scary things that I've heard from less than sensitive M.D.s include:  "You walked in here unassisted?"or, the always comforting  "Be sure to call me if your left side drops or you notice drooling." I would laugh if those answers came up on the Eight Ball, but they were a bit to jarring in the moment.  I've been doing  A LOT of wondering!

    Before you send me a puppy to cheer me up, please believe me that I've also been having a rich life full of friends, family, new experiences, appreciation and music.   Here's a list of specific examples of funtimes that have happened, just so you know that I'm not just getting overly pruned in the bathtub:  Karaoke has been often and amusing, Fluting with friends, I started a Flute Club at the middle school I teach at--15 members strong, Amtrak adventuring to Seattle, a visit from Abby,  go Blazers fun, and playing a 3rd new year's show with Weinland's SuperGroup., enrichment such as a solstice labyrinth walk with my dear neighbor, wow, so many good memories even during what has been a tricky time.  I'm also so incredibly thankful that my pops is doing well after a big surprise triple-bypass just 3 weeks ago.  Happy New Year indeed!!!  
  •       Today I met with an oncologist, and am so excited for her to be on my team!  She's going to take my case to the tumor board meeting next Thursday, and depending on what they decide, I may begin Temodar, which is chemotherapy delivered orally.  She will let me know next Thursday evening what was decided.  Next Wednesday I'll head up to OHSU to visit a neurooncologist to get his take on things and to see if I might qualify for an imaging study that they are doing up there.  Seems like the goal of the study is to reduce murky mri results, sounds wonderful to me.  I resolve to have more fidelity to this blog to keep folks who are interested updated with how its going over here in my wonderland. 
  •       Thank you all for your sunshine wishes and thoughts!!  I hope you are well and that your life is full of the fun parts of wonder!