Slumber party at Harborview

Last night I did a sleep study at the Sleep Clinic at Harborview.  Can you think of anything else you'd rather do on a Friday night?!  They were testing for the normal sleepy things, with a couple of exceptions.  I didn't have to wear a mask since they don't think I have normal sleep apnea, and I got to wear extra wires to monitor my brain activity for seizures, funky brainwaves, etc. since I have a higher maintenance brain now.

Looks comfortable, right?!

Sandy, my technician, got me all wired up and tied in over about 45 minutes.  Then I got to hang out in my hotel-like room until lights out at 11pm.  Then she plugged me into the computer, had me do some tests (move your eyes, wiggle your feet, etc.), and turned on the infrared and video cameras.  And it was off to sleep!  Too bad I'm a super light sleeper and ambulances (and poor falling asleep abilities in general) kept me from falling asleep for a long time... sigh...

Thumbs up all around

Even though it was cold in the room and I didn't have a ton of blankets, I kept getting sweaty (TMI? sorry...) so Sandy came in in the middle of the night 3 times to wake me up and wipe down my scalp with alcohol.  Then she woke me up bright and early at 5:55am to get up!  Nothing like being up at the butt crack of dawn on a Saturday.  :)

Yes boys, I'm single, take a number.

Sandy isn't allowed to give me any specific results or information at the time, but she did say that I didn't do anything bizarre or embarrassing in my sleep, and that yes, it took me a long time to fall asleep and then was a light sleeper after that.  Just like I told said on my form.

I get my results from Dr. B on the 17th.  I'm assuming he'll just tell me I'm hard wired to be a poor sleeper, but there could be something more going on in there that we can fix, which would be fantastic.  To be continued.  Although I did get some pretty good catch-up sleep this morning when I got home.  :)

Best of 2011 time!

For the last 3 years, I've put together a "Best of" CD at the end of the year with my favorite new songs.  Well, friends, it's that time of the year again!  My 4th annual Best of 2011 CD drops shortly (you know, 'cause I'm a rapper) so let me know if you would like a copy and I'll make sure you get one.  I think it'll be a pretty great mix this year!

Here's a tiny sneak peek for you loyal blog readers.  There are some songs from classic repeat favorites like the Decemberists, the Black Keys, Arctic Monkeys, the Kooks, Florence & the Machine, and Death Cab.  There are also some songs from new favorites like Grouplove, the Generationals, Portugal the Man, James Vincent McMorrow, Cults, and many many more!!!

Can't wait to get it all finalized!!  Let me know if you're interested in a copy.  Here's to 2012!

Random bullet point list

I love lists.  Listy list lists.

• For a couple months after surgery, I'd get this thing where when my heartbeat is elevated, it pounded super hard in my head.  It's very uncomfortable and kept me from wanting to work out or even walk fast up hills.  Then it got better.  Well... it's been doing it again.  A lot.  It just about stops me in my tracks.  It's bizarre and quite annoying and slightly painful.  :(
• When I get home at night, all I do all evening long is run my hands through my hair.  It gets all puffed up and looks QUITE gorgeous, and it feels good on my head.  Plus it feels cool to my hands, since my head feels so different than it has my whole life.  So, needless to say, if I see you after 7pm, my hair is probably looking REALLY good.  I'm currently taking volunteers for head rubs and hair puffing.
• The cleaning out and cleaning up of my life continues.  I turned in probably around 75 CDs to Easy Street today to sell back to them, and they took all but 3 (that were scratched).  It earned me $162 in store credit!  Yessssss!  And got some old clutter out of the way.
• I'm thrilled and relieved to have gotten such great feedback on my new haircut!  I knew my girlfriends would like it, but I've received (very unexpected) compliments from heterosexual males ("stunning," "amazing," "supermodel," "better than before").  I'm amazed and VERY flattered.  And I'm sooo glad that my short 'do isn't a turnoff!  ;)
• I talked to Dr. M a bit at my last MRI appointment about my tumor, what he expects, brain cancer, etc.  I'll post a separate update to include the information I received.  It was reassuring.
• My new haircut gives me the best bedhead EVER!  I've been tempted many mornings to take a picture.  Maybe I'll do it one of these days.
• I recently finished some pretty badass crafting.  I'll share results soon...
• I never posted anything about my appointment at the sleep clinic (which was sandwiched between the days of my MRI and haircut... it was a busy few days!).  I met with a new neurologist, Dr. B, and talked to him about my sleep issues.  Most I've had all my life but some have been even worse since surgery.  He was really nice and seemed intrigued by my situation, so I have a sleep study scheduled for tomorrow night.  I'll go to Harborview around 7pm, stay the night there in a special hotel-like room with lots of monitors hooked up to me (lights out at 11pm), and they'll wake me up at 7am.  I can shower there in my private bathroom to get the goo out of my hair and then I'll get the results from Dr. B a couple of weeks later.  Should be interesting!!

That's all.

Getting my wig ready

Well, technically it's not a wig for me, but there is going to be a wig of my hair soon!  I put together my lovely hair package today to send off to Pantene Beautiful Lengths in the mail tomorrow.  PBL creates wigs for women that have lost their hair due to medical conditions, and the wigs are provided to the women for FREE.  According to their website, they've collected over 272,000 ponytails for wigs.  You can add my 3 more ponytails to that number!

The 2 top ponytails are from my recent pixie; the bottom ponytail is from surgery.  Sadly, another big chunk of hair from surgery was way too tangled to send in.  :*(

I chose PBL over Locks For Love for a couple of minor reasons.  One, LFL gives their wigs to kids and I wanted to have my hair go to a woman (I hope that doesn't sound anti-kid, as that's not my intention).  Us women need wig love too!  Second, LFL makes the recipients pay for their wigs based on a sliding scale depending on what the family can afford.  I liked that PBL gives theirs out for free.  And third, sometimes I like a good underdog, and I think that the Pantene program is probably always second fiddle to Locks For Love.  :)

Treat it well, Mr. Postman!

I may have stroked my lovely ponytails oh so briefly as I put my package together to send.  I miss my long hair for about 2 seconds each day and then I'm sooo excited about my new short 'do again.  :)

This is the bag that my hair from surgery came in.  Cracks me up!!

If any of you ladies or alterna-dudes out there are thinking about growing your hair long (minimum 8" ponytail for PBL) for donation purposes, I really recommend it!  Not only will it go to a fabulous cause, it's also a nice fresh start with the short hair.  But maybe I'm biased.  ;)

My short hair, in case you don't believe me...

Merry Christmas, friends!  Have a very lovely holiday!!

A heart-warming (err, cookie-burning) holiday story

Let me tell you a little holiday story.  I was feeling festive today, and have heard a lot of my friends talk about their holiday baking, so I decided I wanted to make some cookie gun spritz cookies.  We used to make these as kids, using the cookie gun my mom has had since SHE was a kid.  So my heart was warming at the thought.

I walked to the store, picked up the ingredients I was missing, and got ready once arriving home.  I turned on the Christmas music, made sure my tree was lit up, and got it alllll going.  I made the dough and squeezed out 1 tube's worth of cookies onto the 1st sheet.  As I got about halfway done with the 2nd sheet, my cookie gun broke.  Yes, that'd be the nice cookie gun from Crate & Barrel that had been used approximately once before.  And it broke in a way that makes it totally and forever toast, not recoverable.  Crap.

I decide this isn't going to stop me, so I roll up some balls of dough, smash 'em flat, and put them on the sheet.  I add some ADORABLE blue and white snowflake sprinkles, plus some lovely sparkly rainbow sprinkles on others, and pop them in.  After about 6 minutes, I decide to check on them.  I peek through the oven window and see the edges looking way too dark.  I open the oven to get a closer look and smoke pours out.  Double crap!

All of a sudden, my smoke detectors are going off, my apartment is filling with smoke (it's a small apartment, so that isn't totally unimaginable), and it smells like burnt cookie.  I put the pans out on the balcony to air out and start fanning the air under my smoke detectors to try and get them to stop.  UGH.

So, I ended up with 2 sheets of burnt cookies (I may have eaten the only 3 cookies that weren't totally black on the bottom), a big bowl of uncooked dough, and a irreparably broken cookie gun.  Allow me illustrate with photos.

My kitchen, as they're cooking.  The flour all over is evidence of my effort, obviously.

The poor cookies, smoking out on my balcony

A LOT of leftover dough

Sad, sad, very sad cookies

The final resting place of the cookies, the dough, and the devilish Crate & Barrel cookie gun... before I took it all to the trash drop

So, if anyone has any leftover holiday treats, feel free to pass them my way!  I'm not sure I should try THIS again anytime soon...  :)

(P.S.  I've always known that my oven cooks a little hot, so I tend to set the oven 5 or 10 degrees below what the recipe calls for.  Perhaps I should start cutting it by 20 degrees...?)

Let's be overly dramatic today

UGH.  I have NOT had a good day.  I am having a VERY bad hair day.  Like, ridiculous.  I've got mysterious wings behind my left ear, and chunks of my bangs won't lie flat and just stick straight out.  I tried playing with the pomade, I re-wet and re-dried it, to no avail.  It poofed throughout the day, and looks very 90s mom with an asymmetrical twist.  And it REALLY affected me today!!

I know this whole thing sounds silly, but with my new short 'do, there is nowhere to hide when your hair doesn't cooperate.  I can't put it up in a wet bun or in a ponytail; it's just there, being ugly.  I've been really happy with the cut and have felt really confident up until today.  But today the insecurity I had about my hair totally impacted me.  I had a crappy attitude.  I felt super self conscious.  I avoided going to the kitchen at work so people wouldn't see me; I also avoided dropping off some files (okay, gossip magazines) with a friend for the same reason.  I wore my coat at my desk, furry lined hood and all, to try and cover it up.  I avoided eye contact with people.  Yes, this sounds very dramatic.  But I was nearly in tears!  I never once felt this uncomfortable with half a bald head and a hat or headscarf on.

I've felt really good and really happy lately, but today illustrated to me that I still have some cracks, some fault lines in my confidence.  And I know it sounds dramatic and unnecessary... but I didn't expect to feel quite so impacted just from having my hair look bad.  Plus now I'm nervous that I won't be able to fix it up right tomorrow.

If the worst of my worries and troubles are a single bad hair day, I am one lucky lady.  But man...  I would never have predicted that it'd affect me so strongly like it has.  Here's to hoping that I improve my hair doing skills and lighten up on myself when it doesn't go quite how I'd like it to.

Twinsies! Is that a mojito?!

I am LOVING these videos, and had to share.  Nothing Sara-specific, no mention of a tumor... just some good old fashioned humor, like the olden days.  Please enjoy.  :)

My missing internal compass strikes again

Friends have asked me if my directional issues are getting better with time.  No, they are not...  I am relearning the ways to get places (so that I can remember them at a time when I'm not actually on my way there), but it takes repetition and I can still get disoriented easily enough.  Yesterday I had an instance that is typical of my new always-lost lifestyle.

I was in a department store doing a little Christmas shopping, grabbed a few things, and went to the checkout line.  Of course, one of the items I grabbed was missing a tag.  Typical.  The checkout lady asked if I would go grab another one real quick or if she should.  Trying to be helpful, I said I'd go get one.  There were a few people in line behind me, so I hurried off to keep them waiting as little as possible.  Well,  I wandered around for about a minute and couldn't find the table with the items.  At all.  Not even close.  I barely found my way back to the checkout stand.  I apologized, told the lady I get lost really easily and couldn't find the table, and asked if she would go grab one instead.  (I apologized to the people in line behind me too, but they just seemed annoyed.)  She walks off, goes about 30 feet in clear sight, and grabs a replacement item with a tag.  And I proceed to feel like an idiot...

Honestly, I didn't really let it get to me, but I just felt silly.  I've accepted my new shortcoming and am pretty much fine with it, but I wish that I could somehow get random people that don't know me to be fine with it too.  Once people know about my tumor, they are so much nicer to me, I can tell (and trust me, I don't tell people about my sitch unless I actually want them to know).  But I'm NOT going to advertise to random strangers in line at a department store that I have it, so instead I just ignore the annoyed looks and let it roll off my back.  Everyone's brain works differently (seriously... I cannot emphasize this enough) and people cannot help the way theirs functions (or doesn't function, like my missing compass).

At least I have a really cute haircut covering up that dysfunctional brain of mine!  :)

Phantom hair

I am loving my new haircut, but it's been quite an adjustment, as you might imagine.  Each night before I get into bed, I've reached back to remove my ponytail holder... that isn't there.  I have phantom hair!  I also grabbed my ponytail holder in the morning for the first couple of days, on my way into the bathroom... but I have no hair to put into it.  Adjusting my morning routine has been a little tricky (and I'm big on routine).  And washing it is NUTS.  I'm not sure when I'll be used to it, but it's quite bizarre to not have hair hanging down in the shower.  And then it drips all over my shoulders when I'm done!  It's a sensation I'd never really felt before.  I don't have to condition, and I'm trying to train it to not be washed every day (which I'm struggling with but trying to stick with).  It's still odd when I catch my reflection in a window or a mirror since I picture myself with long hair (that pesky phantom hair strikes again).  But overall it's FUN!!!  It's been a fantastic change for me.  :)

Finally, 1 head of hair again!

This was a big, successful week!  After getting the good news on Thursday after my MRI, I was all ready for the big haircut on Saturday.  Amy met me there for moral support, photography skills, and 2nd opinions (to make sure I didn't end up with mom hair or a mullet).  And it was a success!  With no tears!

The before, with the longest hair of my adult life

Chopping off the ponytails (to donate)

Eric, my awesome hair guy, seems to be enjoying this

My sweet (temporary) mullet

The after, with the shortest hair of my adult life

I LOVE MY NEW HAIR!  (And my bathroom decor...)

It feels so free, so light, and I can actually do it!  I think I may be able to wash every other day, as it seemed pretty close to good as new today on day 2.  Although I did wash it, as I wanted to test out my abilities to actually do it.  And it was pretty easy!  HUGE relief.  Since I suck at doing hair.  :)

It finally feels like I have 1 head of hair again, and not 2!  For the last 6+ months, I've dealt with half long hair, half short hair (that was bald at the beginning), and it feels SO NICE to go out in public without having to wear a hat or put my hair in a ponytail or bun.  I feel normal again.

Thank you for all of the positive feedback!  I'm not feeling like a man at all, nor did it end up mom or butch or too short.  And if you're looking for a fantastic haircut for yourself, I HIGHLY recommend Eric Nguyen at Tonic Salon, who I've been going to for a few years.  I'd be happy to pass on his contact info for anyone interested.

Scan was clean!!!

My MRI this morning was good, no growth!!!!!!!  I'm soooo relieved.  Next scan is in 3 months.  Now it looks like I've gotta go through with my haircut day after tomorrow... ;)

Thank you for your messages and love and support!!  I'm still winning in the fight against this pesky tumor!

MRI time: 6 month edition

This Thursday (day after tomorrow, as I type this, less than 36 hours) is my 2nd quarterly MRI.  I've been surprisingly not freaked out by it for the most part; I'm fairly certain that's because I've spent my freak-out energy on my upcoming life-changing haircut.  I really hope that I'm not taking this too lightly and setting myself up for a bigger disappointment/anxiety/stress/devastation if I get results that are negative.  Or maybe they really just get easier each time?  Time will tell, I suppose.

In case anyone is wondering what an MRI of your brain is like, here's what happens.  You get changed into a lovely hospital gown and remove everything from your body.  The MRI tube is a giant magnet, so you don't want it to try and suck anything off of you (like earrings).  You get an IV, as they put contrast solution into your body for part of the scan.  The solution is some sort of mineral that shows up differently in the pictures.  I'm a tough person to draw blood from and get IVs into, so this part is not so fun.  If you're tricky like me, request a butterfly syringe.  They're much easier.

You lay down on this long platform, and you put in earplugs AND wear industrial headphones that they play music through (you can request a station or artist).  The MRI machine is LOUDDDD.  They also give you a blanket and try to make you comfortable.  I learned at my last MRI that I have a screw from surgery in the very back center of my skull, so when I lay on it, it hurts by the time the MRI is over (it hurts pretty quickly, actually).  I even got a pillow at the dentist recently.  So I'm hoping they'll have an extra cushion I can use this time.  And then it pulls you into the machine!

You go in about waist deep or so.  The machine starts doing scans that seem to last for anywhere from 2 minutes to 10 minutes or so; they do a handful of different scans.  The machine is very loud, which you hear more than the music.  You have to lay extremely still, and there's a sort of cage around your head that helps keep you still.  They can speak to you and come on over the speakers to see how you're doing and tell you how much longer you have.  Overall, I've been in the MRI tube anywhere from 30 minutes to nearly 2 hours total, depending on the types of scans.  Luckily I don't get claustrophobic.  It's tight quarters.

The MRI machine is white and fancy looking, just like they show on TV.  But TV shows always have a video screen showing the patient's face while in the MRI, and the doctors can see them.  But I'm nearly 99% positive that they created that for TV and that my technicians can't see me.  Or any real MRI-user.  Everything is more exciting and glamourous on TV, isn't it?!  ;)

Partway through they inject the contrast solution into your IV, which you can sort of feel going through your arm.  Then they do some final scans, as the contrast gets into your brain pretty quickly.  And then you're done!  They slide you out, take out the IV, and let you get dressed again.

After that, it's a waiting game.  Last time I waited almost a couple of hours to get my results from my neurooncologist, Dr. M.  Thursday my check-in is 7:30am, with the scan to start at 8am and my results with Dr. M at 9:30am.  And then hopefully I'll be out the door to work, dripping into a human puddle of relief.  If I get not great news... I don't know what I'll do or how I'll be.  But let's just hope that I don't need to face that.  My sister Amy and cousin Steph will be at my appointment with me, so I definitely have support either way.

All of your positive thoughts, vibes, and prayers this Thursday are GREATLY appreciated!!  Okay, and now my nerves are kicking in a little bit more.  I think that's my cue to go to bed.  Will keep you posted, friends...!

An infomercial, brain tumor style

I love shopping, and tis the season for shopping.  Well, and family and love and celebrating holidays and recognizing what we have to be thankful for, but let's put all that aside for the moment.  ;)  I recently stumbled across a couple wonderful things for sale whose proceeds (or a portion of proceeds) go towards brain tumor and brain cancer research and support.  Plus, they're items that you'd actually want to buy!  I can't think of much I'd rather spend my money on.  (Well, maybe a trip around the world, but let's start slowly.)

Bracelets For A Cause by EvelynJay on Etsy sells really beautiful beaded leather bracelets, and a portion of the proceeds are donated to the National Brain Tumor Society.  You know, the organization that my team helped raise over $8,500 for earlier this year?  I'd love to help them out even a little bit more.  Plus you get a super cute bracelet!  She even takes special orders.

Triple-wrap loveliness

Darren Tieste, photographer extraordinaire, very recently published a coffee table book of celebrity photography called The Beauty Book for Brain Cancer.  It is over 300 pages of photos he's taken of some little-known celebrities like Justin Timberlake, Jessica Alba, Ryan Phillippe, and (my personal favorite) Jojo.  They're no big deal.  Proceeds from this book go to brain cancer organizations Sydney Neuro-Oncology Group (SNOG) and Headrush.

She kind of looks like Badass Brain Tumor-Kicking Barbie, don't you think?

I have the triple-wrap gray and silver bracelet and this book on my wish list this year, and will be making purchases shortly.  In all seriousness, if you have someone on your list to buy for that would like one of these products, please consider making a purchase.  Your money will go even farther than at the shopping mall!

Big week. Big. HUGE.

(Picture me saying that all like Julia Roberts, my celebrity doppelganger, in Pretty Woman, when she goes back to the Rodeo Drive saleswoman that didn't help her the day before.  "Big mistake.  Big.  HUGE.")

This is a grande one, folks.  One of the biggest of my year.  Allow me to break it down:

• Monday (tomorrow): Happy hour with #1 Chili Dawwwg (AKA my former Expedia coworker Sosena).
• Tuesday: Holiday cooking class with Sydnie at The Pantry at Delancey, where we will be making individual jars of bourbon butterscotch sauce, black pepper and sharp cheddar cheese straws, peanut butter sesame meringue cookies, and spicy dark chocolate cocoa nib bark with dried apricots.  Hallelujah.  Also, the new Black Keys album comes out.  :)
• Wednesday: My day of rest.  I am VERY reluctantly passing up on Deck the Hall Ball and it's ridiculously kickass lineup (Mumford & Sons, Death Cab for Cutie, Foster the People, Grouplove, etc.) to be well rested and prepared for....
• THURSDAY: My next MRI.  Check-in at 7:30am, scan at 8am, results with Dr. M at 9:30am.  Once I get my positive results (fingers are nearly permanently crossed at this point), the day will only get better with the Florence & the Machine tickets that I have for that night (with opener The Head and the Heart) with my seester Amy.
• Friday: Sleep clinic appointment with a neurologist at Harborview.  And that night, sold out Jingle Bell Bingo Karaoke at the Greenwood Senior Center.  Jealous?  No?!  You should be!!!
• SATURDAY: My haircut.  That is, assuming I get a clean bill of health at my MRI appointment.  Amy will be there to document the experience in photographs.  And perhaps to hand me tissues.  I think I may not cry since I feel pretty ready but Amy says she'd bet just about anything that I will.  Get your own bets in, folks.  That night, I'll be sporting a new pixie 'do, lovely sequined Christmas tree headband, and my favorite "ugly" (really, it's more gorgeous) holiday sweater at the annual Tacoma Ugly Sweater Pub Crawl.
• Sunday: I get to start breathing again.

I am both exhausted and excited just thinking about it!

In great spirits! 'Tis the season!

I feel a little like a switch has flipped inside of me, and I've been in really great spirits lately!  Not that I was all bummed before, but I just feel different.  Positive.  Perhaps it's the holiday season and all the Christmas lights up and NSync Christmas songs I've been listening to.  I feel optimistic, happy, and it's nice.  (Part of it probably relates to feeling like Jeff is a part of my past, not my present, and being okay with that... but who knows for sure.)

This may be the worst music video of all time.  YOU WILL LOVE IT.

I'm a little bit nervous for my MRI this Thursday, but not too nervous.  I'm feeling confident and optimistic and expect nothing but clean results.  (I hope I'm not setting myself up for failure, knock on wood.)  I'm also ready for my big haircut.  It'll be a nice, fresh start for me.  My friend Sydnie told me last night that she thinks I'll look like a supermodel; how awesome would that be?!  I must remember to exude confidence after I get the chop.  ;)

I spent this weekend enjoying a show (The Kooks at the Showbox at the Market with Sydnie) last night, acupuncture today (getting my qi flowing on all of my brain and eye points), doing a tiny bit of shopping in downtown Seattle (not recommended while the suburban moms in minivans are occupying the area), good Thai food (shout-out to Thai Siam), hanging with my BFF Carl and his wife Maria and eating the super delicious Oreo truffles she made, and even an exciting Saturday night trip to Target.  Love it.  Tomorrow has Urban Craft Uprising, a kickass huge indie craft fair, on the agenda.  YES.

Feeling good!!  And looking forward to a big but good week.