Infusion

Friends wheeled me around the Oregon Zoo last Sunday, they did a wonderful job of getting me good views,great ideaDad!!!kudos to Jer, SusieadGary D for the locomotion!!!

Here I am again with a much overdue update. Still dealing with my left side being offline, As in reduced sensation and motor control which is hard times. I can't walk without supervision as in, I am not a solo bathroom user, thanks mom,dad,;others, you know who you are!-thanks for helping with the magic! ;  FlucalledAvastin, I appreciate that.My treasure of a friend--->Sara E was Sara-sitting me while my mom went out to Find things I had a seizure about 3 weeks ago &; got everyone all riled up and; myself admitted into the hospital for a few days, at the hospital   & my poor brain was smooshed up from  swelling, anywho,The doctors were pretty excited;said I shouldn't have been in such good shape as my brain had a midline shift of 13mm....I later googled this, which is something that never helps, yet is irresistible anyways, & with that sort of brain smoosh I should have been in a stupor or "comatose". hospice even came in, which was pretty wild, I'm okay though,even with what felt like was a day filled with bad news bears in multiple waves. My neurosurgeon visited with furrowed brow,explaining that the surgical intervention to relieve the situation would most likely leave me in bad shape... my oncologist referred me to hospice. My oncologist took some very deep breaths before telling me information We met with social worker &chaplain...There was question to whether it was still worthwhile for me to be working toward rehab&mobility restoration. My left hand fingers have been silent since the morning of February 7th,10 weeks, I miss that a bunch,specifically I'm missing music . now, every otherMonday I go in for a chemo "infusion,sounds like a spa treatment..." to shrink this errant pest of a tumor, I hear that some tumors that do not respond to temodar, which is the chemo pill I usedpreviously DOrespond to this chemo potion Avastintreatment,Avastin that I'm using now /think I've hsd 2 IV "infusions ;so far it doesn't seem to make me feel overly miserable just snoozy))it's not made me feel verycrummyat all; the last time, 30 Rock was on the tv so tume flew bylike a birdBirds eat 4 times their own weight each day,

Here I am getting infused with Avastin, no biggie!!

7 I wish I could too, but my new awesome herbalist has out me on a restricted diet....carb restricted, that's the challenge...ketogenic...it mkes sense, itsa big challengefor me though as I'm on steroids&am; a hungry hippo...luckily I'm a broth enthusiast....Thanks for all your good vibes more,photos coming I hope--- xoxoSARA L.I'm off to occupational therapy(arm work)

resurfacing...

Greetings from RIO RIOALRIGHT, so as you're reading thisyou know that Iwoke up from my last Tuesday's surgery and remembered my blog & password to said account.  Well, surgery went well, the only difference for me is that I have lost sensattion & function of the left half of my body,literally, I'm numb on my left eyelid,It's due to brain swelling.... perfect line of sensation on my right /lack of in my left side/trunk and so on....I have achieved the ability to do a shoulder shrug with my lIts harder than it looks,eft AND I'm working steadily on walking with a cane...not for a vaudeville act...to get down the hallway!  Here at http://www.legacyhealth.org/rioRIOhttp:/RIO, they keep me busy with Speech Therapy (keeping my thinker sharpand face even), Occupational/therapy (how to get dressed/take care of personal biz with just one side working...yes, I DID consider becoming a nudist last week...) Physical Therapy(walking tall! &muscle movin'Recreational Therapy (cards &kitchen safety for those on blood thinners101)My parents have been awesome cheerleaders !!!!!!!Gary D was a great Valentine.They have cableTVhere, its been a pleasure to get to watch the Blazer games!!Friends have been generous with visits & I  have been getting great mail also from far and wide.  The staff here are super awesome and making it  a good place to be.  If I keep working my rear off and making good progress, I'm slated to be here in rehab until 2/28,a few creative changes to my house *& hopefully I may be able to go home to the loving paws of Stimpy!Tomorrow I get my 22 staples out and Tuesday I will FINALLY find out what the results (and hopefully agreat plan )are of the pathology from last week's biopsy....really hoping to get  a good plan for my brain. I'll keep working hard over here at RIO, working my way back to mobility.  I;ve got to get my rest as tomorrow starts my 2nd busy week oftraining &reconnecting neural pathways...Hope you're well THank you for your thoughts & encouragement!!
p.s,  I have more to share but typing is slow going with just 5 finely controlled fingers.....

xoxo,
SaraL.RIO

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

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.                                                      

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!!!

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!