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!!

Masque No. 1

       As somewhat of a medically induced shut-in and having a lifetime of being on the lazy side regarding hair-fixin' and make-up wearin', before folks visit or I leave the nest these days I tend to gussy myself up by being sure I've taken a nap and by putting on some face lotion.  My favorite, due to smell, texture and feel, is "Masque No. 1".  It proclaims itself as an "anti-aging mask".   A few days back it gave me a good laugh to read that, because really my big goal right now is to actually get to age.  

        Much of my current activities and future plans revolve around the goal of sticking around and aging, with the exception of this lotion I suppose.  If the stuff didn't smell so good, I might not use it because now it makes me giggle and think "...hmmm...I hope this isn't sending my body mixed messages, body, let's stick around and get aged (<--- pronounced ag-ed)!"   

        Here's a photo montage of some of the smiling faces who have come over to sit with me and take a few moments in the slow lane with me.  Not everyone is pictured, but this is a pretty sweet collection of the stream of the mealtrain and sara-sitters.  There is a multitude of folks who have sent thoughtful cards, emails, flowers, phone calls, treats, prayers, and good thoughts; I appreciate you all.  Thanks to everyone!

 

    Oh wow, I am really being spoiled by friends coming to visit me these days.  I'd never choose to have an exotic tumor set up shop in my favorite organ, but one positive is that I sure do get some Grade-A quality time with beloveds.  Resting necessities and activity limitations do a good job of slowing life down, which is a bit hard for me sometimes, but it pays off with the time that I have to spend with people who I love and enjoy.   Yikes, its starting to feel like Valentine's Day, ya'll!

       I've already become bored of television the last few days, I'm sure I'll recover and start putting some time in on some DVD's soon, but even though the world's events are quite heavy and sad these days, I'm on a great NPR kick again.  I've really appreciated being able to listen to Writer's Almanac with regularity again...here's a nice one I like from their website.  Happy Spring everyone! 

      If you're near, feel free to come over and harvest some of the tulips that are festooning my backyard, just let me know so I can put some lotion on at least. 

Sweet Spring is Your Time

E. E. Cummings

"sweet spring is your

time is my time is our

time for springtime is lovetime

and viva sweet love"

(all the merry little birds are

flying in the floating in the

very spirits singing in

are winging in the blossoming

lovers go and lovers come

awandering awondering

but any two are perfectly

alone there's nobody else alive

(such a sky and such a sun

i never knew and neither did you

and everybody never breathed

quite so many kinds of yes)

not a tree can count his leaves

each herself by opening

but shining who by thousands mean

only one amazing thing

(secretly adoring shyly

tiny winging darting floating

merry in the blossoming

always joyful selves are singing)

"sweet spring is your

time is my time is our

time for springtime is lovetime

and viva sweet love"