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!

X-File Reruns

Hello everyone,
  A much needed howdy and happy autumn to you.  Since my last entry in August, I've had many false starts on doing another update.  With starting a new teaching year and getting back into a busy work life, its hard for me to sit myself down to get this current.
    My August MRI results added another layer of stress to the blur of turning into a teacher.  The results were inconclusive as to whether or not the scan showed radiation damage or new tumor growth.  My doctor looked nervous, I didn't care for that.  The MRI I had done was a special one that also measure the spectoscopy and markers of how my tissues absorb a rare earth metal that was injected via an I.V.  The readings indicated radiation damage and tumor growth, so the MRI was a bust, inconclusive.  My doctor referred me to get a PET scan and also to visit the neurooncology/brain team at University of Washington, to make sure that we're doing the right thing for my case. I met with my radiation oncologist and during our appointment, he showed an overlay of where the radiation treatment was targeted, and how the doses were distributed, and they aligned pretty well with the MRI image, which made me a bit comforted.  My dad found a few studies online that were helpful as well.  It was a blurry time.
  I had the PET scan and received good news in an email ------"...good news is PET scan indicates radiation damage."  WOW, I could finally breathe again.  This happening in combination with the start of school (182 new students to meet and to be a spectacular teacher to, while worrying about a 3rd surgery or chemo=tough)  As you can imagine, I was so happy to hear the good news that the PET scan brought.

Inconclusive MRI

     I'll head to Seattle next Wednesday to meet with Dr. Silbergeld, a top neurosurgeon who has the neurooncology resources of an university, to get a consult on my case.  I'm curious as to what he'll have to say and I hope that it is a productive visit.  I am busy gathering questions to ask.
     I had another visual field test a few weeks ago.  Turns out my vision is getting better (yay!), but according to the norms it isn't "adequate for driving".  Thankfully, I have 2 wonderful friends who also live less than a mile from me and teach at the same middle school as I.  We have a great carpool going, although when it's "my turn", one of them generously drives my car with us in it.  Thank you Erin and Scott!!
   As the subject of this implies, I've been reflecting on the many X-Files experiences that this whole brain tumor surprise has delivered.  I have started watching reruns and I think I might do some looking back on some of the surreal and science fiction moments that I've experienced with medical professionals.  Look forward to hearing about what its like to get half of your brain turned off with barbituates while a neurologist wiggles a rubber lobster at you. Really, this happened and insurance covered it, (cue the X-Files theme song!)
   I hope that you are all warm and cozy this early October.

  Thank you for your care and energy,
xooxo Sara L.

Happy Autumn!

What ME Worry??

Summer Summary

Hey there patient ones,
    No posts since mid-June, wow.  I started a part-time teaching job around mid-June until July and it was great, but of course I was still taking naps, I struggled to stay true to my paper journal and this project was neglected.  Here goes with a sunny day summary of what's what these days.

Noodle Health Update: 

      My July MRI showed swelling in my brain at the surgery and radiation site.  This was not especially abnormal at all, but there was some double checking to make sure it wasn't tumor tissue.  The collective minds of medicine agreed it was swelling.  (breath of relief!)  I'll go get another MRI early on August 23rd to see what's up these days.  I've still been needing rest and am trying to take good care of myself, all parts.

July 7th MRI:  The right image is my noodle without contrast, you can see the hole from surgery on the left of the image. The left image is after I was injected with a rare earth metal contrast fluid. 

       Visual Field.....after my first noodle surgery in 2009 I had right superior quadrantanopia, which means that basically I was left without one upper quadrant of my visual field.  This was not super noticeable as far as daily life, interesting attempts by my brain to fill in the missing input happened occassionally, but really not much to write home about at all. 
      I was sent in to get another Visual Field Test and well, now I've got Homonymous hemianopsia.  So, I'm missing a full hemisphere on my left field.  Imagine two circles filled in all black on the left sides, vertically at the midline.  I have been noticing this deficit.  I have walked into 2  street signs because I did not see them.  I figured I wasn't paying attention, but now its scientifically proven...I truly didn't see the sign pole.  That kid I ran into at the library, yeah, uh didn't see them, sorry!  Other things I've noticed due to this:  when I read text or music and need to go to the next line I need to deliberately move my eyes to find the next line or my "return button" only makes it to the middle of the text or about the 2nd or third measure of music.  Even when I type this, I need to imagine an old fashioned typewriter and move my head to the left so I see the next line (ding!).  I'm going to ask my doctor if there are some retraining exercises, I'm homeschooling myself now, but I imagine there must be some official way to train, I hope so very much. 
  On one hand I was thinking.."OH! This shows that more cells were taken out, so this can be taken as a good thing."  Also, anatomically, the Meyer's Loop is the wiring that radiates through our brains and connects pathways for the part of the visual fields that I've lost, so it's not an unexplained deficit.  The doctors say it could improve, not likely, but it could improve over the next 6 months or so.  Either way, if you see me around town and I don't wave back, it's probably nothing personal. 

SUPER SUMMER fun SUMMARY:

• Visiting friends at their homes here in Portland, you know who you are.
• A train trip to visit my lovelies in Seattle
• Visited Laskyland out on Cape Cod, yay!
• Teaching at a summer SUN program 
• Pickathon with super friends
• Weddings and events of friends
• Playing music out with Laura Gibson and Bright Archer.  Both of these amazing artists have new albums, get your google fired up and check them out! 
• Flutin' it up with Paul (we even had a Kuhlau Luau)
  

Honorable Mentions:

My mom is volunteering for the Portland Brain Tumor Walk this Saturday, August 20th, please contact her if you'd like to help out.  gagl2@comcast.net   Thanks MOM!!!!

I hope to post a new MRI picture of next week's images soon after I see them at the end of next week.  I hope that you are all having a wonderful summer.  Thanks for everything!!!!!!!!!!!!
xoxoxo,
Sara L.

Traveling Without Papers

Hello Everyone!
     Thank you for being patient as I take my time to post updates.  Not much nitty gritty to report these days, as since rad grad, I've been in recovery, transition, and finding my way in the world.  I still have to manage my rest quite a bit, am emerging in activity, trying to catch up, and doing my best to eat the best foods and take care of myself.
 
       I'll be sure to keep you posted on any noodle news. Here are some of my set summer plans with the medical community if you're curious....on July 7th, I have an MRI scheduled.  July 11th I'll meet with Dr. P, my neurosurgeon to go over the MRI images, I'm really looking forward to seeing these images and to visiting with Dr. P.    I'll visit with my oncologist, Dr. W, on July 21st.  I ran into him at the farmer's market 6 days after rad grad, he smiled at me, but I couldn't read his mind at all, so no news there, but he certainly seemed happy to see me out and about.

       Being out and about after radiation reminds me very much of traveling  in places where I don't know much of the language.  Lately I feel like international travel prepared me well for the experience of going out into my community post-neurosurgery/6 weeks of radiation to my thinker.  For example, when I first arrived in Italy, I knew that I needed to eat and where to go.  What I wasn't sure about was how to order.  I went to a place where they sold pizza by the weight.  After having already traveled to other places where I didn't speak the language, I used a tried and true strategy that I made up, but I'm sure others use as well----> Learn Oh! Copy. Appreciate. Leave. (LOCAL)....so basically at the pizza place it was busy, which is an ideal setting for the LOCAL strategy because that means there's plenty of time to watch others perform standard procedures repeatedly.  I love pizza, but a metric slip up could have led to financial and gastric consequences.  Needless to say I was able to copy cat and all was bene!

    LOCAL seems to work just as well these days with going to my local library branch, popping in for a visit at the school I teach at, walking down the street, grocery shopping, being with other human beings, ordering items at a counter, being a passenger in a car that is traveling quickly, and operating a car for short distances.  I'd like to thank France, Spain, Germany, Italy, Auckland's nightlife scene, and some very thickly slurred accents in Scotland for your help in developing the LOCAL method of coping in everyday life tasks abroad and in times of neuro-healing.  Also, a special shout-out to NYC, a city which I have to give credit to for its extensive reinforcement and refinement of the LOCAL technique.  

    I hope that you are all doing well & I appreciate you!  Happy almost-summer!
xoxoox,
Sara L.


         

Shortstack

Hello friends and family!!
        Here's a quick update for you.  As you may know, I finished radiation treatments on Thursday.  I had a big batch of mixed feelings about it, which surprised me.  I've been doing a lot of sleeping and I can tell that my body is busy cleaning house.  Go team macrophage!   I hope to play some flute today, sightreading with strangers, so I am just doing a quick update as my mind seems to have a limit to how much it can stand to process before I need another slar phase. 
        As I'm feeling more sustained energy, I will be returning with more tidbits.  If you have any wonderings, please send them to my email or post them in a comment below and I'll do my best.
      This morning I am briefly addressing some commonly asked questions, by providing pictures and captions....take care!

Here I am just after my final, 31st, radiation treatment.  In my right hand is my rad mask and in my left is a nice certificate from the staff and doctors at the radiation oncology temple.  photographer: Gale D. Lasky

A lot of folks have asked about my hair changes...here's my right side, this is also my surgery side.  Amazing how great it looks just 2.5 months after a craniotomy.   I'm pretty much a punk rock girl at heart in a Dead Milkmen way and now it shows even more.  photo cred.- GLD2

Left side, not as much as the right as this area had less of a dose, good thing too, as I'm using that side of my brain RIGHT NOW for a lot of things and so are you too I bet. photo cred- GLD2

Pop that hair down like normal and I look just like me, except for my tanning bed look, which should pass. 

         Thank you all for your love and energy, it matters so much to me.  I hope that you are all having a memorable to great Memorial Day weekend! 

 xoxox, 

Sara L. 

Rad Grad Class of '11

Ebb and Flow

   Hello there!

       Wow, can you believe its already May 18th, 2011?  I'm pretty impressed by how the dates click by these days.   Things have been rolling along just fine in my world lately.  Radiation treatments Monday-Friday, oncologist appointments on Wednesdays and also I do most of the other things folks do, but with a great flow of friends and family visiting and taking care of me.

     Not much is necessarily new as far as nitty gritty details.   I only have 6 treatments of radiation left, I can't believe I'll graduate from radiation therapy next Thursday. Then I'll get an MRI 6 weeks after that, they have to wait a while so the swelling in my brain goes down from the radiation.  Then I'll see my neurosurgeon regarding the MRI and what's what. It will be nice to start recovering from radiation and to continue recovering from surgery so that I can have more stamina for the joys of summertime.   Yes!!!!!

     In an earlier post I'd mentioned how there are different and new levels of tiredness.   I have a new classification and its called:  Uncomfortably Exhausted.  My brain is a nice brain, its been really well behaved for 2 surgeries all the way inside it and a WADA test, is full of creative ideas, can operate my limbs to do various tasks and play music. Some confused cells called astrocytes made a scary brain tumor, that's not so awesome, but overall my brain is pretty amazing, as are brains in general I think.

              These days, if said brain is uncomfortably tired and I'm pushing it, it gives me signals that I need to go lay down and shut my eyes.  A signal could be:  a lack of detail in my vision, an odd motion processing (someone gliding even though they are walking), misplaced emotions, or absolutely no attention span.

    I think I have been getting so uncomfortably tired from radiation that it put me on a slippery slope toward some "stinkin' thinkin'".   I also have to confess, that rash that I had, it really sucked for me and those around me. It seems as though there are a lot of people going through some heavy health stuff right now, and we're all around the same age, and it made me sad and feeling powerless.  Everything seemed all at once. I had a pretty decent pity party for myself early last week, nope, you didn't get excluded from the Evite, I do that kind of partying by myself and its over now, so don't worry.

      After my 1st brain surgery/tumor discovery in 2009, I had a hard time with future thinking and planning, but it wasn't a cognitive ability issue, it was a thinking error problem.  I worked pretty hard with a professional to adjust to things, and that helped, but I regressed a bit last week.  I enjoy setting long term goals and achieving them to some measure.  With having the health surprise, thinking about where I want to be in 5 to10 years changes from "a house, a family, teaching and/or dog" to "here??"  breathing?".   It throws me off my normal thinking that I'd had for 30 years, it takes a while to adjust to the unknown and get into the flow, but thankfully I'm back in it for the most part.

     I felt better as I had some great visitors, wonderful correspondence, a fantastic weekend, clear skin, love, friendship, cat purrs, music, going out to a movie, music playing, fun plans set, and lots of other good healing magic, everyday miracles and self-compassion.

        Last summer, I read Sarah Silverman's memoir and of course it was funny, but I also liked her mantra "Make It A Treat" (M.I.A.T.).  Well, you know what yanks a girl like me out of a slump?  I use her M.I.A.T. method and it picks me up in small to large ways that all add up like a big pedestal of happy and adds so much to my outlook and output of energy. Sarah S. was referring to pot or chocolate cake, but for me....

Here are some treats that I appreciate and relish often and/or lately, in no particular order:

• Lemon water
• The Cosby Show
• looking forward to summer fun such as weddings, music, visits, Pickathon, nature, the list goes on...
• playing flute with recorded music of bands I like and just waiting for them to call me to play some fantastic show (this can also be classified as DAYDREAMING and its fun!)
• Letters from my in town pen-pal and real life friend G.E.S.
• Surprise snail mail and thoughtful S necklaces
• Visitors
• Smart jokes and laughing
• Going to the head shop "Up in Smoke",(so subtle isn't it?) for incense with Susie or Leslie and ALWAYS leaving with a giggle inducing story to tell...
• attending social events that I wasn't sure I'd be able to weeks ago!
• Scrabble online
• FRIENDS
• FAMILY
• My wonderful neighbors!
• YOU
 

         Thank you for your support and thoughts, I feel so blessed and you help me rise out of valleys up into the happy blue skies!!  I hope that you are well!

xoxox,

Sara L.

Bonus Round...


Here are some photos and captions from the recent past of my wonderful life.I am struggling a bit learning how to get my "smart" phone to give me all of its photos.

 

Susie blessed me with the Monday night (slumber party) shift and Sam is a tireless Tuesday morning driver and breakfast BFF.
Here's when they did the responsiblity hand-off. I love laughing with these two!! I love my friends 110%!!!

My mom and Erin. Erin is so sweet, she came by with delicious items after a long day of teaching at the middle school we usually inhabit together. It is such a treat to get to spend time with her and I'm so excited about the fact that she and her hubby have bought a house just about a mile away from mine.

This is me pre-rad with Mateo, he was born on 2-13-2011! His parents, Gabe and Koali, they treated me with Thai and their company.
Fantastic!

Here Gary D. and I are in St. John's. This is on a Saturday about 3 weeks ago. I was really impressed and feeling happy that I was able to attend a science teacher workshop at PSU for most of that day. Science teacher friends attended the workshop and were extremely helpful in making it a successful day for me. Gary D. drove me back and forth and was happy for me too, because he knew it would make me feel accomplished. It was a treat to be productive and then to meet up with friends afterward. It felt like real life and I can still live it! I love it!

Leslie took me to get my zip zaps in a ZipCar...I felt this a treat for the alliteration and the opportunity to show you the "reserved for radiation treatment patients" parking spots.

Michael and Desiree made my week last Thursday by bravely driving themselves and their fresh to the world son, Colin Patrick (born March 28th, 2011), to visit with me. I really appreciate them taking a chance and driving all the way here from Yamhill County with their new addition. So brave, huge TREAT. It was a nice long visit and I'm still smiling from remembering it!!!!

That's me and the linear accelerator that I spend time with Monday through Friday at 9:06 AM.

Susie VOTES!

Lilly Lasky, my parents' dog, visits. She's pretty handy for walks.

Scott and Kiyoe have generously given me a key to their house so I can visit Eastwood during the day. I haven't gotten to see him as much as I'd like to, due to my demanding napping schedule, but we've had some great playtimes in his backyard and we took him to Forest Park for a short hike. That's fun and a definite cheer-us-all-up treat.

Saturday was Hanna's 30th party...which means that she hosted her friends to celebrate at the Historic Kenton Firehouse. It was a Tretti Ars, which is a traditional Swedish celebration for the 30th birthday. It was amazing. I napped all day Saturday until 4:30pm so I could go, and it was worth it! Gary and I got all dressed up.  Amazing friends to catch up with, an exuberant and loving friend to celebrate, the food was WOW!, and I will stop now, I don't want to be too much of a braggart. It was amazing and I'm thinking of making up a Swedish festival for the age 34 for my birthday in September.

The beautiful birthday girl Hanna, Gary D., and moi saying our end of the (my) night; out living our lives! I am pretty sure I didn't get to bed until after 10...what a thrill!

Leslie and Jocelyn's band rocked Mississippi Studios Sunday afternoon.  Friday, Leslie went to camp (Ladies Rock Camp) having never played the bass...by Sunday she was making Slash look like an amateur with her performance! I am so proud of her and I was so thrilled to be present! Way to go Leslie!!!!!!!

No comment...

Photos with captions...

Susie blessed me with the Monday night (slumber party) shift and Sam is a tireless Tuesday morning driver and breakfast BFF.
Here's when they did the responsiblity hand-off. I love laughing with these two!! I love my friends 110%!!!

My mom and Erin. Erin is so sweet, she came by with delicious items after a long day of teaching at the middle school we usually inhabit together. It is such a treat to get to spend time with her and I'm so excited about the fact that she and her hubby have bought a house just about a mile away from mine.

This is me pre-rad with Mateo, he was born on 2-13-2011! His parents, Gabe and Koali, they treated me with Thai and their company.
Fantastic!

Here Gary D. and I are in St. John's. This is on a Saturday about 3 weeks ago. I was really impressed and feeling happy that I was able to attend a science teacher workshop at PSU for most of that day. Science teacher friends attended the workshop and were extremely helpful in making it a successful day for me. Gary D. drove me back and forth and was happy for me too, because he knew it would make me feel accomplished. It was a treat to be productive and then to meet up with friends afterward. It felt like real life and I can still live it! I love it!

H

Leslie took me to get my zip zaps in a ZipCar...I felt this a treat for the alliteration and the opportunity to show you the "reserved for radiation treatment patients" parking spots.

Michael and Desiree made my week last Thursday by bravely driving themselves and their fresh to the world son, Colin Patrick (born March 28th, 2011), to visit with me. I really appreciate them taking a chance and driving all the way here from Yamhill County with their new addition. So brave, huge TREAT. It was a nice long visit and I'm still smiling from remembering it!!!!

That's me and the linear accelerator that I spend time with Monday through Friday at 9:06 AM.

Susie VOTES!

Lilly Lasky, my parents' dog, visits. She's pretty handy for walks.

Scott and Kiyoe have generously given me a key to their house so I can visit Eastwood during the day. I haven't gotten to see him as much as I'd like to, due to my demanding napping schedule, but we've had some great playtimes in his backyard and we took him to Forest Park for a short hike. That's fun and a definite cheer-us-all-up treat.

Saturday was Hanna's 30th party...which means that she hosted her friends to celebrate at the Historic Kenton Firehouse. It was a Tretti Ars, which is a traditional Swedish celebration for the 30th birthday. It was amazing. I napped all day Saturday until 4:30pm so I could go, and it was worth it! Gary and I got all dressed up.  Amazing friends to catch up with, an exuberant and loving friend to celebrate, the food was WOW!, and I will stop now, I don't want to be too much of a braggart. It was amazing and I'm thinking of making up a Swedish festival for the age 34 for my birthday in September.

The beautiful birthday girl Hanna, Gary D., and moi saying our end of the (my) night; out living our lives! I am pretty sure I didn't get to bed until after 10...what a thrill!

Half Baked

Dear friends and family, 

      I've passed the half-way point of radiation...14 more doses to go!   Things have been going pretty well overall.  I definitely am more limited with energy and sustained focus, which can be frustrating.  

       It leaves me with many unfinished to-do lists, piles of magazines and books left unread, thank you cards are at a 3-8 day later than normal post, and I don't even enjoy the television all that much either.  Why watch television, when you could be sleeping or writing an overly ambitious list of tasks I need to complete, right?!

  Even with new challenges, here are some selected triumphs that have occurred over the last few weeks: 

I have:

• enjoyed several unsupervised stand-up showers (very exciting!)
• saved some money with my coupon clipping hobby.
• attended to Katie for her wedding dress fitting .
• played flute and piccolo for a short Opera Theater Oregon performance.
• clipped articles from the newspaper and marked Gary Larsen "Far Side" cartoons to use in my classroom.
• limited my news media intake during the royal wedding and other world news events.
• walked farther.
• read half of Tina Fey's Bosssypants.
• did the dishes and operated the vacuum without incident.

   It's not all fun and games though, here's some things that have happened that have been character building for me and my primary caretakers/handlers.

    Some shedding...

May 4th, 2011  Tub Time

     My hair at the spot that gets the most radiation...well, its gone and going this week.  I was feeling more curious about it than sad or bummed out.  I was thinking, okay, well now I know what its like to lose some hair...and I have a state fair worthy comb-over. I knew it was coming and was tired of waiting for the shedding to start. It was a relief to me for this to start happening as they can never tell you how much or where it'll happen.  My oncologist and radiation therapists had educated guesses that seem to be pretty correct so far.  

          I quickly learned that I need to be a little more sensitive though, as people who love me don't appreciate  my "hey! check it out!!" attitude to my piles of hair that I take out to the yard for the birds to make their nests with. 

        Sometimes I can see that some of this stuff is easier on me than those who have to watch me go through it, well actually I feel that way often, but not all the time, but when I feel that way that's hard for me too very much.

Cinco de Mayo:  Dermatitis es no fiesta.

It feels like poison oak. 
Thanks to Tara P. for my fly "S" necklace!

     So, one thing we've been really careful about is my skin.  With the radiation, its really important to take care ofthe epidermis.  Basically its getting a sunburn Monday-Friday with the radiation, so its pretty important to take of it or we may get off schedule for the radiation.  

      We've been using 100% aloe with distilled water in a spray bottle and Miaderm (an expensive radiation relief cream that is available at the oncology pharmacy).  The 100% aloe has to be refrigerated, so we bought another aloe gel from New Seasons that I can take around with me.  Well, forget that stuff, because I got a nasty rash and welts all over my face, neck, and ears.  It feels like poison oak and has made things really difficult for me (and my caretakers...).  

      When I showed up for my daily rad treatment, I got diverted to the examination room within moments.  Photos taken of my condition and at one point I had the attention of 2 oncologists...I love attention and all, but yikes!!!  

        I've been airing my face out, taking loads of Benadryl and having minor crying jags from my swollen and hot face and huge red crusty ears.  They said to try some over the counter products after the initial airing out.  Walgreens sold some Benadryl gel and cortisone cream yesterday...fantastic improvement !  Its been getting better. Still super itchy and I'm loaded on Benadryl pills and cortizone so I don't scratch my face off, but I hope that things continue to get better with this, really thankful the reaction isn't happening on my scalp.

   What else?

Gary D. applying the 100% aloe/distilled water magic potion, the good stuff! That's my regular part, not the bald spot, yet?
He and my mom had the great idea to put it in a squirt bottle.  Thanks Nurse engineers!!

That's me with rash playing flute with OTO. I can't believe I did that.

This is my mask..the tape and markers show the fields of radiation and their entry points, keep in mind that the radiation also exits through my brain.  The machine is a linear accelerator.  This shows my right side if you need help orienting yourself.  Also, my nose is the point.

More fields. 

Left fields (find my nose point as a point of reference)

    
       I'm getting very tuckered out from this so I'm going to be done with it even though there's more I could share.  

Special thanks to those of you who have: 

• reached out to me through email, postal mail, visit, or phone
• driven me to radiation treatments
• delivered meals, treats or yourself to my house
• invited me to activities even though I'm not at my tip top shape
• been patient of my inability to commit to plans due to my tiredness
• given me a key to your house so I can visit your dog during the day
• sent me healing thoughts, spells and prayers
• let me have the best seat
• driven and helped me with errands
•  helped me keep track of my finances and stay organized
• been forgiving with how sporadically I post blog entries
• made me smile with your good humor, caring and friendship.  It really gives me a nice little vacation from cancer treatment hardships.

    Take care and thanks!

xoxo,

              Sara L.

p.s. Here's a favorite blog of mine these days...I can really relate to this Samantha K.   

http://www.alieofthemind.com/

p.s.s.  If you want to subscribe to my scribbles, go to the bottom of this page, enter your email address and it will deliver updates to you.

Rad is radical...

    Hey there!!  Last week was my first full Monday through Friday week of radiation therapy.  It went well as far as I can tell.  I am definitely learning a new form of tiredness.  I have learned new forms of tiredness ever since this whole neuro adventure began in 2009.   I was going to make you a chart of the varying degrees of exhaustion, tiredness, snooziness (which often coincides with snottiness), and too tired for public display tiredness, but I couldn't figure out how to make a table.  I'll try and work on that sometime.   I am very thankful that I have the time to heal and rest right now.
     After back to back days of radiation, I've discovered "hot headed melt into the floor" exhaustion.  The great news is that so far it is lessened by steady hydration, good nutrition and rest.  I think that most ailments can be cured by those things usually, so its pretty natural so far.  Stay tuned to see if we find a new classification after weeks of daily radiation to the head...I'm curious as the professionals seem to tell me in a apologetic tone that I'll be feeling fatigued (especially as my brain's getting zapped and I had my surgery 5.5 weeks ago) and see some hairs go away in weeks 2 or 3, so I'm trying to see this as the honeymoon phase, while also taking extremely good care of my skin.  Dad, Ma, and Gary D. have been very nice to apply aloe and special cream to my scalp and face for me as well.  It's tricky to get the lotion on the scalp rather than just to overly condition my hair..so the team approach is really working best.      
      You know that feeling when you've spent a bit too long in the sun and your skin feels heated and hot, the first warning of a sunburn??  Well, that's how my head and face feel basically, and the feeling increases throughout the week, and by Friday my mouth feels a bit cooked as well.  I find relief though so far and I'm approaching this as a "let's see what happens and deal with what may come" angle.  I feel like last weekend was a big recovery weekend, and my sleep schedule is changing all over again.  Stimpy is still being very supportive.  
    I have a lot more to write, as I've not been writing much for a while, but I will try and catch up as I can.  Here are some topics I am thinking of expanding on in blogland soon:

•  Outdoor walks, a highlight
•  Spotlight on Super Friends...any ideas for a template for these?
•  Portland Trailblazers: Playoffs really put things in perspective...
• Blue Bird and Baby Mouse, a tragic tale of the food web in action...in my front yard
• Protein Low...Its the new low blood sugar situation...
• Netflix has a great selection of low impact yoga and "exercise" 
• Today I saw someone younger than me in the radiation waiting room.
• Radiation therapists are very kind.
• Eating healthfully while not overdoing it on anti-oxidants (they interfere with the radiation goals, let's not protect the bad cells...) is a challenge.
• Oh, yeah, that's right I'm signed up for 3 graduate credits at PSU and I forgot that my pre-March self did 90% of the work early and left it somewhere in my classroom...hmmmm
  
  I hope that everyone's doing well and enjoying some Spring magic where ever you are! 
  xoxox, Sara L.

Marvin Gaye

         Yesterday I visited my radiation therapy place for a training treatment and met with my radiation oncologist.   It went pretty well overall.  After the 1st waiting room, I get to wait in a secondary waiting area...its got a fish tank, a nice view, beverages, a radio and a jigsaw puzzle to solve. 

        After someone came to get me, they led me to the treatment rooms.  In the first room, there's a control zone, 3 monitors and what looks like a mixing board.  All of my 31 treatments are already entered into the computer.  They let me check that out and then showed me where the action happens. 

    They had me lay on an un-padded plank and gave me a ring, for keeping my hands busy.  At first when they put my mask on, it was very uncomfortable as its very tight and I had pulled a radiation rookie move by leaving my eyes open.  Above where I lay they had one of those cool lights with a happy blue sky scene, in hindsight I'd say that perhaps that's what misled me.

      

      The mask is designed to keep my head and body still so that they can target exactly to the mm of where they want to treat.  That's a good thing, but that also makes it so that if you have your eyes open...well that mask is so tight, you're left unable to close your eyes or blink.  I really like blinking a lot.  The folks there are nice and responsive to my needs, so after I panicked for a moment realizing my mistake, they popped that sucker off me.  I closed my peepers and they put it back on me.  As they were putting it back on, I asked them to explain to me again why the mask is how it is, I knew this would calm me down from the eyelid drama.  Story-time worked and it felt just fine! 

    They were doing some measurements to make sure they had all their ducks in a row.  They took a few x-rays and were lining them up with some CT Scans from last week...and checking things out. The plank moved up and down.  Then they came out and double checked my mask and moved the tape that lines up with the lasers a few mm.  

         

     Then a man's voice, keep in mind that I've got about 4 or 5 different voices talking to me and I cannot open my eyes to know if they're the people I met earlier or a new person, said to me "Do you want to do your first treatment today?". 

      Well, I thought that was a pretty decent question, did I?  I asked the male voice, well, would you?  He said "Its your choice, but I'd probably go today because then I'd be done sooner.".  There's a radio in that room and guess what song was playing, did you guess?  It was "Let's Get It On", by Marvin Gaye.  I figured that song was just about perfect to make my decision to...so I let them know, yes, let's get it on.  

       So we did, nothing too weird happened.  I didn't see any weird lights or have any epiphanies, maybe later on down the line.  I mostly listened to the radio and was impressed when the voice on the speaker overhead said, "okay, we're done, we'll be right out to take off your mask.". 

               1 down, 30 to go.  I've got my next appointment today at 4:36 and I'll be going M-F until my last treatment on May 26th.  Here are a few photos I have from yesterday.  Thanks for reading! xoxoxo, Sara L.

From RadiationTherapy, Day1

What's on your mind?

          Those of you who are Facebookers may recognize the title on this entry as the writing prompt that we see on the FB to help us with our current status message. Sometimes I wish they'd change the question every so often to things like, "What are you happy about today?", "What are you up to?", "What's the recipe for your best meal?", "What sort of thing can you complain about today that shows that you are privileged to live in a First World country?"...oh, scratch that last one, those are the ones that make me want to go back to the innocent days of Friendster or Telnet.

            I have to be honest with you all right here and now, I've been ignoring this question on Facebook for about 2 or 3 years, because  I'd rather share pictures of my cute cat and what's on my mind through photos and links in general.    

         I was thinking yesterday, what would my statuses be if I answered the "What's on your mind?" writing prompt honestly...here's a few, beware, you may here the distant sirens of the "Waaaaaaahm-bulance", its a whiny siren.

What's on your mind?

• My dietitian was sincerely impressed with my food diary!! Way to go Mom!!!
  
• I can open my mouth large enough to eat sushi and I'm not afraid of leaving my zip code, yay!! 
  
• I bought myself a used alto flute today at flute fair!
  
• I was washing my hands and discovered that I have a bulging bruised vein from one of my IV lines 18 days ago.  It just popped out today.  Eeeek!
  
• The neuro-nurse says I need to do a heat compress on said vein, and call her if it gets worse.  No more flute playing for a while until this vein is less bulgy.
  
• In the radiation oncology waiting room...noticing that there must be a trend toward hats and scarves this Spring...I'd better go shopping soon!  
• Glad I'm a science teacher so that getting fitted for a radiation therapy mask is pretty interesting...lasers! a face mold!  CT scan!  and now a 6'8" tall physicist on my medical team!  FTW!!!
  
• Wow, I could write thank you cards all day long and not have thanked everyone enough, I am so blessed!!!!!
  
• Mandy and Susie slumber parties mid-week, wow!!  Thanks ladies!!!!
  
• Can't wait to get my vision a little better, its pretty subtle, but pretty annoying...right superior quadrantanopia sure does take away 25% of my field of vision...thank you visual cortex for working on how to compensate for this latest surgery, I know you'll get all these tracers and random images right as rain as soon as you can.  LYLAS
  
• Meyer's Loop in my right temporal lobe, I'm kinda missing you right now....we used to read and see so well together, but you were in the right place at the wrong time and that PXA had to go bro'.  Peace out!
  
• Wow, I walked over a mile on a sunny, blue-sky day on the Esplanade!!!
  
• I can tell I'm exhausted, because I can barely stand up or see without spots, time for a nap!
  
• Holy cow!  Erik Larson sent me a Canon SLR via Nick H. all the way from London!
   
• TODAY, APRIL 14TH:  I'm really nervous and expectant about today's appointment with my radiation therapy folks.  I'll get the mask and my first zip zap treatment.  I want to know what its going to be like, and I am looking forward to getting this show on the road!  Antici......pation!!