7 plates and 27 screws

At my MRI last Thursday, I asked Dr. M about the number of screws in my skull, expecting the number to be something like 6.  Well, was I blown away when they told me I have 7 plates and 27 screws in that ol' cranium of mine.  So many!!!  The screws are tiny (like eyeglass screws) and the plates are small-ish too, but still.  I jumped off of the exam table to look at the pictures closer, and couldn't help but smile and laugh.  I feel pretty badass.  :)  My titanium doesn't show up in MRIs, so these are from the CT scan I had the day of surgery (note the 5/23/11 date).  So here's my bling!  (It's not the best picture quality of all time, as they mailed me printed pics and then I shot them with my iPhone... but it's a start.)

There are my 7 round plates, 6 in the middle and 1 to the left (which is actually the right side of my head, these scans always seem flipped because you're looking at my face, not the back of my head, in this)

Side view, obviously, of the lone plate.... and I can tell exactly where this is on my head because occasionally I bump it and it HURTS.  Also, you can see the skull incision more clearly!  Eek!

I think these are so cool!!  Apologies if they gross you out.  I didn't give much warning...

So totally unrelated to my titanium (which does not set off metal detectors, thank you for asking), I had something weird happen yesterday.  Waaaay back when all this craziness started almost 2 years ago (!!!), before I was diagnosed with a brain tumor and surgery would have seemed like the most unlikely thing of all time, I had these weird things happening with my arm.  It was these weird arm symptoms that caused me to see a doctor, who referred me to a neurologist, who referred me to another, who referred me to Dr. S and Dr. H and Dr. P (my kickass neurosurgeon team at UW).  Since surgery, the weird arm symptoms have rarely returned.  I'll get a weird tingly finger for a few minutes, and that's about it.  (Side note: these symptoms are unrelated to my tumor).  

Well, yesterday, I had my most significant arm symptom since before surgery.  My upper left arm went really achey from Monday evening through this (Tuesday) morning.  It ached enough to where it is difficult to sleep.  But it's gone now.  It felt soooo weird though.  Not physically, as I'm familiar with the weird arm things I've gotten.  But it felt so weird to feel them and know what they lead to.  It blows my mind, really.

I'm very happy it's gone now (and I can hopefully sleep much better tonight!).  It was a little like a splash of cold water to the face.  Life.  It's crazy how such small things can lead to such enormous, humungous, life-changing never-be-the-same things.

Oops, I did it again

At my appointment with Dr. M on Thursday, I told him about my middle of the night shower.  He didn't seem too concerned, and thinks it's related to stress.  And let me tell you, these MRI appointments bring me stress to no end.  Until I get good results and can relax, that is.

So it blew my mind when that night, Thursday night, the day of my MRI, I showered again in the middle of the night.  Got up, showered, put on lotion, moisturized my face, and wandered back out of the bathroom.  Only then did I subtly decide I could go back to bed, at 11:45pm.  UGH.  I end up really tired in the morning, and lack of sleep usually gives me a headache (and its only cure is more sleep, or more cowbell).

I've got a midnight shower disorder, and the only prescription is more cowbell.

I had figured with the positive MRI results and the stress melting out of my body, I wouldn't do a middle of the night shower again.  It bummed me out, and makes me feel like a total crazy person.  But I've slept pretty much through the night the last couple of nights, so that makes me feel good.  Isn't that silly?  To feel accomplished because you didn't take a crazy person shower in the middle of the night?!?!  Welp, I'll take it!

Next step: Putting a sign on my bathroom mirror that says "If it isn't 6:00, go back to bed."  Let's see if that works!

Midnight showers bring May flowers

I've mentioned on here the issues I have with determining what time it is when I wake up in the middle of the night.  I see the clock saying 3:30am, but I cannot comprehend whether I can get up, whether I'm late for work, whether I can go back to sleep, etc.  Wednesday night took it to a whole new level.

I went to Deck the Hall Ball (an awesome 9-band concert that lasted 8 hours) on Tuesday night and so I was super tired on Wednesday.  So Wednesday night I went to bed at 9pm (yes, I'm old and lame, I know).  I konked out for a few hours and awoke at 12:30am.  I was so convinced that it was time to get ready for work, I got out of bed, started the shower, TOOK A SHOWER (while thinking, man, I am sooo tired right now), applied lotion, moisturized my face, put on my bathrobe, and wandered back out of the bathroom.  At that point I realized that it was in fact the middle of the night (and kind of early, actually) so I went back to bed in my bathrobe and with wet hair.  Ughhhhhhhhhhhh....

"This blog doesn't have enough clip art!" said nobody ever.

The weird thing is, once I realized it was okay to go to sleep and that my alarm had not actually gone off, it makes me feel like going back to bed is the totally normal thing after taking a totally normal midnight shower.  I don't have this *d'oh* moment where I realize what I've done.  It just seems completely okay that I got up and showered and now am going back to bed.  It's not until the morning that I want to slam my palm to my forehead.  I don't get it.

This stuff makes me paranoid that my little tumor friend is growing and getting into trouble.  Especially with my MRI less than a week away, I'm a little on edge about the whole thing... and at the same time thinking this midnight shower thing is pretty ridiculous and kind of funny.

Distractions

Tonight I had a minor directional blackout, as I call them, where all of a sudden I was disoriented and didn't know which way to go.  I had just finished a Halloween-themed FlyWheel class in Bellevue with my friend Lindsay, was feeling yoked, and got back to my car at the Bellevue P&R.  I started driving through the parking lot and couldn't figure out if I needed to turn right or left to head towards I-90.  (It's left, as I can clearly picture in my head now and have done tons of times.)  But I had no idea.  Luckily Lindsay pointed me in the correct direction, and then I was good.  But dang.  I haven't had that happen in months, at least 6 months, maybe even longer.  I remember telling Dr. M's (temporary 1-time) replacement at my last MRI that I hadn't had any blackouts in a while either.  Hmph.  Just a subtle reminder of my crazy brain and its little friend...

The passing of my friend Sara has morbidity on my mind.  I get the Sunday paper (for the coupons, mostly) but always read through the main section, the local section, arts & life, etc.  Well, the local section contains obituaries and I sometimes scan them out of curiosity.  I need to stop.  I'm telling you, every time you see a picture of someone relatively young, especially compared to all of the elderly people who have passed, it is due to brain cancer or brain tumors.  Almost every time.  There were 2 young(er) people in Sunday's paper, and both had brain cancer/tumors.  This does me no good.

I think I'm just starting to get nervous for my next MRI, a month and a half away.  I hope that my little tumor friend has been quiet this last 4 and a half months, but who knows.  I'm very lucky to be in my situation with my circumstances, but I can tell I'm getting nervous.  There's just a lot of brain-tumors-and-the-havoc-they-can-wreak on my mind.

Sometimes you feel like a nut

I think I've mentioned it on here, but I have this thing since surgery where I get really disoriented in the middle of the night about the time.  As in, I wake up, see it says 2am on the clock, and cannot comprehend what that means.  Do I need to get out of bed?  Did I sleep past my alarm?  I can see it's dark out and quiet in the city, but should I be at work right now?  My alarm didn't go off, but shouldn't I be up?  It usually takes me a minute or 2 to realize I can go back to sleep.  It sort of comes and goes, but has been happening more recently.

Well, last night I awoke around 3am, determined it was time to be up, went into my bathroom, turned on the shower, and was about to get in it when I decided to come back out into the kitchen for a final peek at the clock.  Then I realized, it's still quite dark, and it's a bit quiet out, and I didn't think my alarm had gone off...  So I reluctantly turned the shower off and climbed back into bed.  I woke up a couple more times, checking the time on my alarm clock and on my phone and in my kitchen (I can see my microwave and stove digital clocks from my bed).  I finally got it through my head that I could sleep until my alarm.

It's such an odd, panicky, disoriented (temporary) feeling.  It never ever happens during the day but seems to happen nearly every time I wake up and feel obligated to check the time (sometimes I don't feel the urge to check the clock, in which case I'm totally fine and go back to sleep).  Makes me feel a tiny bit crazy...!  Eek!  But you know, if this is one of the few things that I have to deal with post-surgery, I can handle it gladly!

I am freeeeeeeeee

You guys:  There has been some SERIOUS recovery in my little ol' brain the last couple of months, and all of this hectic work travel has really shown me how much has changed from even just a few months ago.  My sense of direction?!  ALMOST BACK TO PRE-SURGERY NORMAL!!!  I cannot even express how excited I am about this.  I posted recently about how it was starting to improve and oh man, it just continues to get better, full speed ahead.  I said it had gone from an 8 out of 10 before surgery to a 2 afterwards, recently improving to a 3.  Today I'd estimate it's at a 7.  A SEVEN!!!!!!  777777777777!!!

With no sense of direction and amazing ability to disorient myself by merely blinking, traveling to somewhere new (or even somewhere familiar, for that matter) was kind of scary.  I haaaate being lost and it was guaranteed to happen nearly anytime I went somewhere that I hadn't been to at least 10 times since surgery.  But I went to San Francisco a couple weeks back for work and was able to successfully navigate Lindsay and I from our hotel to the office, every day, only using my map on day 1.  Got us home too!  And as we walked and explored, that intuition that had been missing for over a year started to creep back in.  I knew that if I went out that door, I needed to go left.  I knew that if I stepped off the elevator, I should turn right.  That feeling just seems so natural and ingrained in you when you have it, and it seems crazy to think about ever NOT having it.  Now that my directional intuition is back, I am soooo thankful for it.

And it continues to restore my confidence!  I'm in London this week (cheerio and pip pip, whatever those mean) and was able to successfully navigate myself to Topshop on Monday, to Covent Garden to meet my friend Emily for dinner on Tuesday, to Covent Garden again last night for Thriller Live (talk about a fun show!), to and from work on 2 tube (subway) lines, to the Specialized bike shop and to more shopping tonight, all by myself.  And if you've ever been to London, you know that their streets are cray cray crazy and the complete opposite of a grid system.

PYT, if I do say so myself ;)

This new confidence in my ability to get around successfully (and to get myself back en route if I get lost) feels so stinking good.  I've missed my intuition sorely.  I'd resigned myself to feeling lost forever.  Dr. M had made it sound like my sense of direction was probably gone for good.  And here we are, seeing (major) improvements in those deficiencies in my brain more than a year later.  Brains are so amazing!!!!!!  I think mine is especially kickass, but I'm a little biased... ;)

I'm having a lovely time in London and it's only multiplied by my sense of confidence (and accomplishment) as I'm able to get around successfully.  This is big.  And I love it.  :)

Blogging catch-up

I know, I've been off the radar for a couple of weeks.  Not intentional!  Was out of town (San Francisco), enjoying delicious food after work and trekking to Portland for the big walk over the weekend.  Now that I'm back in Seattle, I have only a week to relax and enjoy myself before taking off for London (1 week from today), and then I get back for a weekend before jetting (ha!) off to Springfield, Missouri for the week after.  That's out of town 4 out of 5 weeks.  I'm exhausted just thinking about it.  Not to mention the MS Ride is the weekend between London and Springfield.  (Went on a 25.5 mile training ride today and had an AWESOME time.  That 22 miler will be a piece of cake!)

Anyway, I hope to catch up on my pending blog posts soon (the walk! San Fran observations! my SERIOUSLY KICKASS progress with my direction and intuition!).  Stay tuned!!

Small victories

I'm catsitting for my friends Lynn and David this week (shout-out to their kitty Lola!).  They were (temporarily) living in my apartment building but just moved down the street into their condo, as their renter just moved out.  To get into their condo, you go through the lobby, through the parking garage, up some stairs, down the hall, and you're there.  It takes a couple minutes to walk (maybe?) and when I met Lynn on Tuesday to get her keys, I was certain I'd screw up the directions.  I even took notes in my little Moleskine notebook that I keep in my purse (for just such occasions) and talked through the directions again with her.

Yesterday, when I arrived to feed Lola, I made it all the way to their apartment door WITHOUT checking my notes and without screwing it up!!!!  I was so excited and relieved.  And tonight I did it again!  Holler!!!

Lola, PLEASE try and contain your excitement to see me.

To the average mortal, this may seem silly/excessive.  But for me?  This is improvement.  Six months ago, this would have gone differently.  It feels so gooood!  :)

Breaking news!

Okay, okay, it's not TOTALLY breaking, but I've been noticing something BIG and new over the last month or so.  The recovery of my brain after surgery that I was told would be fully maximized within 6 months or so of surgery?  Well, my friends, my brain isn't done healing!

My biggest post-surgery difference has had to do with my (lack of) sense of direction and (lack of) ability to orient myself.  But I've definitely been noticing that my sense of direction is improving!  I can remember directions and ways that I walked or drove *slightly* better than I have been.  I have a list of places that I can drive to without my GPS and feel comfortable doing that (Target, Bellevue park & ride, grocery store, downtown Seattle (mostly)).  I know that seems silly, as these are places I've been driving to for years and years, but me feeling comfortable and confident in my abilities to navigate without needing GPS and without screwing it up is new and sooooo nice!

I would say that before surgery, my sense of direction was about an 8 out of 10.  Not amazing, but I could get around easily enough and remember things.  Post surgery, I'd call it a 2.  That's perhaps generous.  What is it today?!  Maybe a 3!  Woo hooooo!!!

Celebrating with coworker Lindsay and 80s icon Lisa Frank's friends

Do I still have a long way to go to get back to my pre-surgery abilities in this department?  Yes.  But are things continuing to improve (which pleasantly surprises me)?  YES!  The improvements in my direction are really helping my confidence.  I haven't felt confidence in my navigating since before surgery, and starting to feel that again is sooo nice.  It's making me tear up just typing that.  (I'm such a softie now!  Sheesh.)

One cray cray year

I failed to recognize a recent anniversary on here, which was 1 year from the "we think it's a tumor" (direct quote) call from my doctor (Saturday, March 31st).  Then shit got cray, real cray cray.  (That's crazy, for the uninitiated.  I'm pretty sure.)

And what have I learned this year?  What HAVEN'T I learned, is more like it...

• I have a tall heart that's hard to fit on the screen (per the lady who gave me an EKG)
• I have small ear canals (per a technician who put in earplugs before one of my million MRIs)
• I have a skinny neck (per my sleep neurologist)
• I have a skinny throat/airway (also per my sleep neurologist)
• I have a symmetrical head (per the technician who wired me up for my sleep study)
• I am a VERY difficult IV or blood drawing patient... but I don't need an expert to tell me that
• Women who get migraine with aura should NOT, I repeat, NOT be on estrogen-based birth control; increased risk of stroke!  Eek!!  Even if your lady doctor has said it's okay for years...
• Women who get migraine with aura should also take a daily low dose aspirin, to prevent said strokes
• Snoozing your alarm makes you a worse sleeper (alleged by Dr. D, my sleep doc... but I'm not totally convinced yet)
• Sleep schedules are important for poor sleepers (again, alleged by Dr. D)
• They make hospital beds that they put extenders on, to make the mattress long enough for those of us that are vertically superior
• You can have as much food as you want when you're admitted to the hospital, and it's kind of tasty
• They store secret pudding in the fridge in the ICU; ask for it
• Good insurance is AMAZINGGGGGGGGGG
• Brain surgery is EXPENSIVE
• Tumors are nuts
• Brain tumors specifically are nuts
• Cancer is nuts (mine luckily isn't cancerous at this time, but I'm still gravely aware of how nuts it is)
• Brains need time to recover from pesky surgeries
• Senses of direction are overrated, anyway
• Friends and family are amazing
• I feel like I won the lottery, but instead of people coming out of the woodwork to ask for cash, they've come out of the woodwork to express support and to help where I never expected it
• Life is cray cray
• Things can change in a second, for the good or the bad
• Enjoy what you have
• Focus on being happy and healthy
• Spend time with your friends and family
• Thank those people that help you, verbally and/or via thank you cards (I love mail)
• Pixie haircuts are hot
• Scary medical things, like brain surgery off the top of my head, not only affect you but your loved ones too... don't forget about their struggles and challenges during these times and that they need love and support too
• XXX Vitamin Water is no longer drinkable to me (after using it to take all of my meds after surgery for days)
• One particular ringtone on the iPhone is no longer usable either, after hearing it every 3 hours for days, alerting me to take my meds... gives me nightmares now *shudder*
• Have I mentioned that life is crazy, happiness and health are all that matters, and friends and family are so wonderful?!?

I do love lists... I could go on for days.  Or hours, as I have to stay up till midnight tonight with my current sleep schedule.  Yech.

Tell someone important to you today that you love them and are so appreciative for their support.  And then try to find some pudding...

Mini meltdown

I'm taking a short break from your regularly scheduled "European observations" programming to share this short announcement.  I am freaking out.  And not in a good way.

I am currently alone in Munich, as my colleagues from Seattle and Paris have headed back to Paris, yet I'm here in Munich by myself for 2 more days.  And I'm really uncomfortable with that.  My directional issues are as terrible as ever, and I can barely make it from the hotel to the office here (that is around the corner and 1 block away) without screwing it up.  I am hoping that I can get to work, out to get some lunch, back to the office, and back to my hotel on my 1st try tomorrow.  I can have both breakfast and dinner in my hotel.  Keep your fingers crossed.

I am really quite terrified to venture out, to be honest.  I get lost SO EASILY, and having that happen alone in the dark in a city where I don't speak the language is scary enough to keep me confined within my hotel.  It's sad.  I should be out checking out the city, and I'm just too scared.  To tears.  I'm so frustrated.  This makes me feel so stupid, and nobody seems to quite understand what this really is like.  It won't improve.  I can't just follow a map, or remember street names, or recognize buildings, or remember that my hotel room is left out of the elevator (it may be right, for all I know).  My brain doesn't do that anymore.  I'm afraid this will deter me from my love of international travel...

I'm going to stop crying now and get to bed.  Needless to say, as much as I love Europe, I can't wait to get home (as I'm spending next week in Paris all alone too).

I'll now end this meltdown and return you to your regularly scheduled programming...

My stupid burden

I have been feeling so good, so happy, but I know that I can't feel that wonderful all the time.  Tonight, my spirit broke a tiny bit.  I haven't cried in a while, maybe a month.  That's pretty good, considering the year I've had.  :)  But tonight I was sitting at home, flipping through an issue of Women's Health magazine, when I came across an article about the risk of stroke to women.  Specifically, they talk about the relationship between strokes and migraines.  It says:

"[According to] an associate professor of clinical neurology... women who have migraines with aura need to take extra care to live healthy lifestyles to lower their risk for stroke."

About 20% of migraine sufferers get aura symptoms with their migraines, and I am one of those lucky women.  I get visual disturbances mostly, but in the past I've also had numbness and tingling in my face.  I get the vision stuff before the headache, so it signals me to take my migraine medicine, and I feel lucky for the heads up.  I take a low-dose aspirin everyday to help lower my risk of stroke, specifically because of my migraines with aura.

Something about that sentence just got to me tonight though.  I immediately started crying.  This migraine stuff isn't new for me by any means (it started in middle school), but sometimes, like tonight, it just feels like so much.  Stupid migraines with aura that increase my risk of stroke, my tumor and the vision and directional challenges that come with it, circulation issues in my feet, sleep problems, (non-dangerous) heart palpitations, and the still mysterious tingling arm and hand from a year ago (but luckily, it rarely happens).  I'm just having a little pity party for myself and wishing that I didn't have to deal with the health issues I have nor worry about what they mean for my life.  I am by no means the only person to have health challenges, everyone does.  But tonight they just feel a little heavier than I would like.  And I'm sad for that.

A fantastic new resource

A few days ago I stumbled upon the site of an organization for young adult (aged 25-40) cancer patients called I'm Too Young For This! Cancer Foundation (or i[2]y).  While my tumor is not cancerous (and hopefully never will be! AMEN), the lifetime "illness" or condition I now have to live with is just about as close as you can get to cancer, IMO.  They're treated the same (surgery, radiation, chemo) and for brain tumors, the line that divides non-cancerous brain tumors from cancerous ones is pretty blurred.  Anyway, long story short, I've found this site to be really helpful and relatable and full of information.

My favorite part is a blog on the site called The Stupid Cancer Blog.  This blog is SO refreshing!!  It offers insight and puts into words some of feelings and experiences that I didn't quite know how to say myself.  It also makes me think, "Wow, I'm not the only one that feels this way!"  And support, even virtual support, is really important.

I wanted to share some of my favorite quotes from the blog, as they are spot-on to me.

From "Cancer Frenemies: When Good Friends Say Bad Things":

Cancer can bring out the stupid in people. Complete strangers and well-meaning acquaintances blurt out the most insensitive things right to survivors’ faces. 

Nita, who had a double mastectomy after she got breast cancer in her late twenties, was told by a coworker, “I don’t know why you are so hung up on breasts. Look at me; mine are small.”

Most friends and acquaintances are very supportive, even when they don't know what to say (and I don't blame them).  But the thing that drives me NUTS is when I tell someone about the differences in my brain post-surgery, specifically my completely MIA sense of direction and (dis)ability to orient myself, and the person goes "Oh yeah, my sense of direction sucks too."  I'm sorry, but it is NOT the same thing.  I'm not going to get into details explaining how my brain is now, as I've done it plenty of times on here, but there's a huge difference.  And I know the person is only saying it to make me feel like I'm not alone in my difficulties with direction, but the effect they're getting is the opposite.  And it REALLY bothers me.

From "The Fear of Recurrence: Cancer's Evil Twin":

Friends tried to brush my concerns aside. “You’ll be fine,” they would say. “You shouldn’t worry so much. We could all get hit by a bus tomorrow.” They meant well and they thought they grasped the fleeting nature of life with their freak-accident analogies, but cancer survivors don’t have the luxury of dealing in generalities. We have had been told by medical experts that we have a life threatening illness, and because of the limits of science, we must wait and see if it kills us. Or not.

This blog entry is about the fear or recurrence (ha! duh, from the title) and being hyperaware of what is going on with our bodies.  But this paragraph in particular really resonates with me.  When I've mentioned my fear of death (or more specifically, dying young or dying younger than I would like) to people, I've had people on multiple occasions tell me, "But you could get hit by a bus tomorrow.  There are no guarantees in life."  I KNOW.  But it is very different when there is a tumor or cells living in your body, that you already know is/are there, that will (likely) be the source of your demise someday.  Yes, there are no guarantees in life.  But knowing that I must wait and see if it kills me is a whole different beast.

There's also a blog entry called "Scanitis: When Cancer Screenings Fill You with Dread" that is pretty accurate, about how it feels before each MRI.  I'm pretty certain that I'll never go into an MRI feeling totally confident or remotely relaxed.  I try to prep myself for bad news, as I don't want to be surprised.  It's hard.  But the feeling after getting good news from Dr. M is the most wonderful feeling ever.  EVER.

I feel like I've just vented a bit (feels good!) and that was not my intent by sharing about this blog.  But it's so comforting to read something that someone else wrote that hits home for me.  There is an i[2]y happy hour coming up in Seattle in a couple of weeks (called the Stupid Cancer Happy Hour) that I am really excited to attend.  I'm going with a friend of mine that was diagnosed with cancer in 2011, and possibly a 2nd friend too.  And I can't wait!  It's so refreshing to be around young people (hey, 31 is STILL young, I say!) in a similar situation.  I'm confident that it'll be a much better experience than my attempt at the brain tumor support group.  Yikes.  Will let you know how it goes!

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.

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!  :)

Paranoia

I've become part of a vicious cycle that I imagine will be a part of my life for a long time.  Scary MRI appointment, relief from good news (HOPEFULLY), 2 months of relaxation, and then a month of nervousness and paranoia until my next MRI.  At least, that is how it seems to go since surgery.  I'm a little under a month away from my next MRI and I'm starting to get really nervous.  Paranoid, really.

I've been sleeping really terribly, which has affected my head my whole life (more headaches) and my eyes since surgery (feeling strained and tired and less than stellar).  And for almost the last week, my eyes have been exceptionally terrible.  They feel tired and strained all day long, even when I wake up.  It's like I've been reading on a computer screen all day... except I haven't.  They should be somewhat refreshed from the bit of sleep I'm getting.  Granted it's crappy crappy sleep, but still.  They've been so bad that I skipped a friend's going-away party on Saturday night because I was nervous to drive at night to get there.  My logic tells me that my poor sleep has finally built up enough trouble to cause my eyes to be very unhappy with me, but my paranoia tells me that my tumor is growing and causing this.  After all, it is in the vision part of my brain.

I am afraid to type out my fears on here, as I'll start to cry, but the summary includes fears of tumor growth, radiation, and going blind.  Not the life I dream of, that's for sure.

I called Dr. M, my neurooncologist, today and spoke with his nurse.  I told her about what's been going on in the last week and asked for a recommendation for a sleep doctor.  I'm hoping she calls me back tomorrow after talking with Dr. M, as I just don't think I can wait until 12/8 to try and get this resolved (or at least on the 1st steps to resolving it).  I've slept poorly my WHOLE life and it's really starting to cause me some serious trouble.  And if it's causing symptoms that make me paranoid that my tumor is growing, that is really a bad thing.

Recovery discovery

As I get "more normal" and more time passes since surgery, I'm becoming hyperaware of the permanent adjustments to my brain as a result.  There are new things that pop up as well, or maybe things that I just never really took notice of.  When I had my first MRI checkup, I asked Dr. M how long it would take for my brain to fully recover and regain any functionality that it would.  I cannot for the life of me remember if he said 6 months or 12 months, but I'm just a couple weeks short of the 6 month mark and wondering if this is how things will be, or if there will be further adjustments.  We'll just have to see.

One new thing I've been noticing recently, just in the last week, has to do with my ability to recall words.  And we're talking EASY words, not random tip-of-the-tongue references that you have to Google to find the word for.  Today in a meeting at work, I could not think of the word "script," even though my coworker had just used it in the sentence I was responding to.  It took me about 10 seconds to come up with the word.  The other night, I was trying to think of the name for my blow-up air mattress.  That would be "aerobed."  It came to me the next morning.  A few days ago, I couldn't think of the word to describe the different things that Expedia sells (e.g. flights, hotels, cars, etc.).  My coworker goes, "You mean 'products'?"  Ugh, DUH!!  I really don't recall having issues remembering everyday normal words like this until very recently.  I hope it's not an indicator that anything fishy is going on in my brain that shouldn't be...

I've also figured out that when my sleep suffers, my eyes suffer too.  I've always been a crappy sleeper, which has gotten a little worse since surgery, and a LOT worse lately with the breakup, so my eyes are quite unhappy with me.  They are super tired all day and don't want to focus in the morning.  They get even more tired throughout the day, and driving at night makes me a smidge nervous as things are a little blurrier than I'm used to.  I've had to limit my reading, and I can't read on the bus anymore because it just devastates my eyes for the day.  I'm hoping that as my sleep improves (hopefully... someday...) my eyes will become happier again.  I'm considering seeing a sleep specialist, but who knows.

On the plus side, I am realizing that while my directional and orientation issues are still there, I'm able to sort of relearn ways to get places effectively.  I still have little directional "blackouts" as I call them, where I'm somewhere familiar and totally blank on which way to go (sort of like my current word recall issue, hmmmm).  But I am able to better recall the ways to get places after I've done them more.  Like I can picture the entire drive to Target again, which I couldn't do before.  I think I'll always get disoriented super easy and need GPS and have other people navigate, but at least the places I go to regularly are coming back to me as I go to them more and more.  WHEW.

I'm learning to accept and adapt to my new post-surgery brain's shortcomings, but am still optimistic that I can perhaps be even more normal than the 99% that I feel like I'm at now.  Cross your fingers!

Just what I was afraid of

I ventured tonight to my very first brain tumor support group at UWMC, after a previous failed attempt.  Amy and Steph met me there, and I was pretty nervous.  I've been afraid that going to this support group, full of patients/survivors and family (or "caregivers" as they say), would freak me out.  I feel like I'm settling into a decent little reality that does include my tumor but definitely does NOT focus on it, and I love the freedom in my thoughts and emotions of not thinking about my tumor and, frankly, being lucky enough to really not have to "deal" with it right now.  (Knock on wood.)  I don't want that to get sidetracked by scary stories and situations.

So tonight they open with mentioning that a certain regular attendee to the meetings won't make it tonight, as he just entered hospice.  Not a good start.  Then I introduced myself, along with 2 other 1st time attendees, and we got to our guest speaker.  Apparently sometimes they have guest speakers, they talk for 30 minutes (of the alloted 2 hours), and they're on a topic that is relevant and that the group wants to hear about.  Tonight's guest speaker talked about near-death experiences for the ENTIRE 2 hours.  A lots of things death-related.  And how she's not afraid to die.  And what it will be like, based on her near-death experience.  And how great my book is, it has won awards, would you like to buy it, I got a 6-figure advance from my publisher, etc.

While I thought the near-death topic was somewhat interesting and it didn't offend me, I was still a little uneasy/emotional.  She then said some things to the tune of "we're all going to die, face it, blah blah blah blah, brain tumors or you could get hit by a bus, we're all dying, etc." and I couldn't handle it.  I just started bawling.  And instead of her doing whatever WOULD have been an appropriate reaction, she thought that I was crying due to some sort of "breakthrough" that I had related to her topic.  No, lady, I was crying because you started shoving death in my face, like it's no big deal.  Then it started this debate in the room (that probably had 25-30 people in it) about whether the topic she was discussing was appropriate, and whether she was being insensitive, and had things gone too far.  She came by and was holding my hand, apologizing (sort of) in front of the group, which was quite embarrassing and not helpful at all.  The post-discussion, which essentially started when I began crying, lasted probably 10 minutes, at least.  And now I feel like I've disrupted their whole meeting and am embarrassed for crying in front of a room full of strangers (when nobody else was, especially).

After that, I was glad to hear that others in the room were uncomfortable and it wasn't just me.  In fact one lady got up and left in the middle of it, saying "I want to leave" but very politely and subtly.  And all of the regulars were saying that meetings aren't usually like this, speakers usually only talk for 30 minutes, the topics aren't like this, we usually laugh a lot, and they all seemed genuinely concerned about my well-being and comfort and want me to come back to future meetings.  They all reiterated that the first year is the toughest and that it will get easier.  I got hugs and phone numbers and emails.

I really think that I picked the worst possible meeting to start out at.  But really, I didn't know if I was ready for this stuff, and I'm still not sure if I am.  They warned me that next month's speaker is about some morbid topic, so it might be better to come back in December for their annual holiday party meeting.  But I just don't know at this point.  Tonight was tough.  :(

The bun is BACK

Enough about those Parisians, you say (you don't really say that, luckily, because more observations are coming); what is going on with you, Sara?!  Why thank you for asking, and do allow me to fill you in, Sara in the 3rd person...

I am hat free in Paris!!!  I wore a ponytail for the trip here (as I've learned, hats in the airport draw suspicion (since hats are so dangerous, duh) and can require the full invasive patdown, which is not so fun) and had my hair in a pone for the next couple of days.  I somewhat accidentally discovered that I could once again do my beloved wet bun without too many tweakers sticking out... and I haven't worn a hat since!!  I've been here for 2 weeks now and literally haven't put a hat on.  It's been GREAT.  I hope Paris isn't tired of my wet bun look, as it's not going anywhere quickly.  I do have some tweakers at the top and on each side, but they're nothing a little gel and a lot of careful tucking can't fix.  I can feel my tweakers flapping in the wind sometimes, but honestly, I don't care.  Not being looked at for wearing a hat is refreshing.

Being hat free has made me a little sad for the good ol' days (nearly 4 months ago) when I could wear my hair down and long and lovely though.  I miss it.  Yes, I still have a lot of long hair, but I can't let it just go naturally.  I have to wear a ponytail, wear a bun, or wear a hat.  It actually makes me really sad...  It's like it's just hit me or something.  I'm still looking forward to chopping my hair, but man, I miss my long, pretty hair.  It really was something.  :(

On a positive hair note, you may or may not remember that I've had an adorable (sike...) bald spot, about the size of a silver dollar, on my head where my incision didn't heal so well.  I've been afraid that it was a permanent inhabitant, as no hair was growing in.  However, I am happy to say that it is finally fuzzy!!  I can't tell how thick the hair will be there but it is a HUGE relief to know it's starting to come in.  WHEW!

I've actually been navigating Paris okay for the most part.  I have the route to work memorized:

Out the door of the hotel, walk a block, pass Us Golf, follow Rue de Bassano to Louis Vuitton, enter the George V Metro stop, line 1 to La Defense, exit to the left for "Autres Sorties", up the escalators all the way out, head towards the ugly sculpture, and the black Franklin building is on the right.  Elevator to 22, through the door, 1st hallway on left, Roissy conference room.  Cha-ching.

The route home is memorized too:

Out of the building, to the La Defense Metro entrance, down the escalators, immediate sharp left for line 1 away from La Defense, exit at George V, take Rue de Bassano past Louis Vuitton until Us Golf, cross street, 1 block to hotel.  Booya.  Although I do walk past the hotel door about half the time but catch myself shortly thereafter.

My sense of direction is definitely not all peachy though.  You might not have noticed, but there aren't many "take a left, take a right" directions in my descriptions above.  That's because, although I recognize the route when I see the landmarks I've memorized, I can't tell you at this moment as I type this for sure which direction I turn when I walk out of the hotel door, or which way to go when I see Us Golf, etc.  I remember KEY directions (like the correct way to turn when exiting the Metro in the morning) because I've written them down and going the wrong way takes me way off track.  Plus when you're in a Metro tunnel, you don't have landmarks to use. 

I've had a few of my little directional blackouts, like yesterday when I came out of Starbucks (that I've gone to every single morning before work), could NOT remember which way to walk to work, then turned the wrong direction.  It takes about 10 seconds to realize I am walking the complete wrong way.  And tonight I went to mine and Jeff's favorite Italian restaurant (it was my 3rd time having their lasagna.... bless you, Maitre Pierre) all by myself, a whole 4 blocks away or so.  I made it there fine, but when I came out, I went the completely wrong way.  I ended up slightly lost, only by a few blocks, but it took me twice as long to get home as it did to get there.  Not so fun in a crazy city like Paris, by myself, as it's getting dark, without a legit map since I have no cell reception and didn't bring a real map.  And I HATE being lost.  It was actually really frustrating.  It just makes me feel like a total idiot.  This sense of direction crap is easily the most challenging part of my recovery.  I hate it.  Makes me feel like crying when it happens.

But enough about me.  I've added some links to some lady friends' blogs, which you may see to the right.  As I've gone through this adventure, I've been amazed to learn about how many young people really are affected by brain tumors.  Way too many of us!!  Anyway, I've been expanding my tumor dominating network (power in numbers, of course) and have learned about some strong and incredible ladies.  Stalk them with me, won't you?!  ;)  Krystal is a friend from college who was in my sorority.  She found out about her tumor and had surgery just a couple months before I did.  I saw her story play out as I was trying to get to the bottom of mine; this was both comforting and scary.  I stumbled upon the blog of Jessica randomly, as we have a mutual friend that I went to HS with in Chelan.  Jessica lives near where I grew up (and is moving to Seattle soon!).  Krystal, Jessica, and I all share 1 thing in common: Dr. S was our rockstar neurosurgeon.  He sure gets around, doesn't he?!  I learned about Sara at the recent Portland Brain Tumor Walk, as her dad sought me out since she and I have so much in common (and she had wedding festivities to attend to and couldn't be at the walk).  We're both Sara L's, we're both super tall, we both have stinking brain tumors that we stumbled upon randomly, we both love live music, etc.  She lives in Portland but I'm hoping to meet up when we're in the same city sometime.

I feel like I've just spewed a giant update on here, but Jeff flew out of Paris this morning (sad....) so I've got a little extra time on my hands now.  Great reason to catch on the ol' blog, wouldn't you say?!  Posts on more Parisian observations and my French adventure are coming soon (with pics).  Until next time, goodnight friends!

Gaining my confidence

After yesterday's wonderful news, I'm still feeling the adrenaline of relief combined with the exhaustion of an emotional roller coaster ride.  I still want to drape myself on things.  Still haven't in public.  ;)  I still tear up for good reasons (and can cry on command... maybe I should be an actress?!).  But I think the best new feeling I'm experiencing is confidence.  I finally am starting to feel a little smidge of confidence about my health.  I can't put this tumor completely out of my mind and realistically never will, but I feel like the sun is shining a bit more brightly from behind the clouds of this year I've had so far.  Maybe things really will be okay...?

I took this picture in the Caribbean in 2007 (hey Lynn! woo!); it's kind of how I'm feeling

I'm not trying to jinx myself or get totally casual about my tumor (knowing it could blindside me at any time), but perhaps it doesn't have to rule my life or determine my path.  Each clean MRI will get me a little more confident.  And I can't wait.