Please help support Team Sara, Brain and Tall!!

Today I registered a team and will be walking in the National Brain Tumor Society's Brain Tumor Walk in Portland, Oregon on August 20th.  Woo hoo!!  I'm also rounding up some of my finest walker friends and family to join me on Team Sara, Brain and Tall.  (No mosey-ers allowed!!  Unless I get lightheaded!)

I would LOVE your support and donations to this very worthy and special cause.  The National Brain Tumor Society helps with research and support for people impacted by brain tumors.  And it seems to be one of the few (only?!) organizations that is specifically for brain tumors and is not for cancer.  Not that I'm hating on those cancer orgs, as they're just as important, but us non-cancerous brain tumor patients and survivors need some love too!

Please go to my page and make a donation.  Everyone's support, emotionally and physically and monetarily, has meant the WORLD to me.  Seriously.  I tear up just thinking about it.

http://www.braintumorcommunity.org/goto/saralindstrom

If you're interested in joining my team and fundraising and walking, that would be fantastic too!!  The more the merrier.  We'll be sporting some sort of matching team tshirts and hopefully going out for a fun little get-together afterwards too.

THANK YOU SO MUCH!!  I love you guys!

P.S.  My trip to New Hampshire and Boston was pretty awesome... I'll have an update on that soon.

Photo album entry

In honor of it being 1 month (tomorrow!) since my surgery, and because I'm about to drop off the blogging radar for a week while I head to Boston and New Hampshire with my boyfriend Jeff, I thought I'd post a handful of random pictures from the last month.  Since this blog is essentially my journal of the whole experience, I want to make sure they're included.  Maybe more for me than anyone else, really.  :)

With my beautiful seesters Amy and Lisa, the day after surgery

CLEARLY not medicated, doing my best Coolio impression

Gorgeous huge peonies from LuAnn, which you could smell upon entering my apartment

With my lovely Mom, on the roof of my apartment building, and speaking of...

Eastward view from my rooftop: can you see why I spend so much time up here?!

Westward view from my rooftop

Look how far I've come!  Wearing hats, going to birthday parties at wine bars with Jeff, and drinking champagne!  (Well, not TOO much champagne; I'm even more of a lightweight now than usual.)

Let's hope for good weather in New England (and Seattle... since, let's face it, we deserve it!).  Have a great week, everyone!  :)

Day one at work: check

I survived my first day back at work!  It started a little rough, when I went out to my bus stop (across the street from my apartment) to find it has a huge new "Bus Stop Closed" sign on it, due to construction.  I hustled to the next stop and made it on the bus.  I even made it all the way to Bellevue uneventfully.  How exciting and grown-up of me!  ;)

Two bus rides and a short uphill walk to work was a little much apparently, as I walked it fast (that's what us tall people do) and got to work a little lightheaded.  I'll take it slower tomorrow.

It's sort of a tradition in my department to decorate someone's desk when they've been out on vacation or leave or anything like that.  While my work friends told me they wouldn't do anything to my desk, I couldn't help but laugh when I rolled in to a HUGE Hershey kiss-filled set of lips on my desk, plus some gorgeous glamour shots of 2 of my coworkers (it's a long story...).

The flash was a little too strong for the chocolate lips, plus ye olde David decorating my wall

Ryan in a leopard cowboy hat says "welcome to my classy audit area" very nicely

Oh, and did I mention that my chair was taped to my desk, my candy bowl (since I look like a receptionist, hence the Hershey kisses) was taped to my desk, my phone was taped to its cradle, and my computer cords were sneakily unplugged?

No kleenex left behind

A lovely little surprise (taped, of course) to my chair: woop woop woo hoo!

My eyes got pretty tired from gazing at my computer for so long today, to a point where my head hurt a bit.  But the shorter than normal workday helps, and I'm hoping/expecting that things will get better every day.  Plus I have some lovely new decor at my desk to look at, so that helps too.  :)

Thanks Expedia friends for a good first day back!  

Wish me luck!

I'm headed back to work tomorrow after 4 weeks off!  I feel good about my recovery and healing but am a little nervous about getting back into a regular schedule and sitting at a computer all day.  My doctors recommended in my work release note that I start off with 6 hour days for the first couple of weeks before moving back to a normal full-time schedule, so I think that'll help me have a smooth transition back immensely.

I haven't had many pictures on here lately, so here's one from my cousin (and guest blogger) Steph's birthday last night at Cork!.  Please disregard my ridiculous sunburn.  My last leisurely day on the roof of my building was a bit sunnier than I thought, apparently.

Strating cousins, aged 30 and 30(+1), respectively

I also have to give a shout-out and huge CONGRATULATIONS to my sister Amy and her new fiancé Eric, as they very recently got engaged!  We're excited to have you in the family, Eric!

Ahh, looove...

If you see a tall girl in a hat looking confused in the bus tunnels tomorrow, please help me out!  ;)

I heart PB&J

That would be Peter Bjorn & John (of whistle-y "Young Folks" fame), not peanut butter & jelly (gross).  Right before my surgery, I went to their show at Neumos with my friend Sydnie.  They played an old song of theirs called "Objects of My Affection" that has some lyrics I feel like I can relate to.  Here are some select lyrics and a live recording of the song (as the official music video is not very good and I love live and acoustic versions of songs).  Please enjoy.  :)

...And the question is, was I more alive then than I am now?

I happily have to disagree

I laugh more often now, I cry more often now

I am more me

But of course some days, I just lie around

And hardly exist

And can't tell apart what I'm eating

From my hand or my wrist

'Cause flesh is flesh, flesh is, flesh is flesh

The difference is thin

But life has a certain ability of beating new life into me

So I breathe it in

It says here we are, and we all are here

And you still can make sense

If you just show up and present an honest face

Instead of that grin

And the question is, was I more alive then than I am now?

I happily have to disagree

I laugh more often now, I cry more often now

I am more me

And the other day, this new friend of mine

Said something to me

"Just because something starts differently

Doesn't mean it's worth less"...

I LOVE MUSIC.  <3

My weirdest new symptom

My difficulty orienting myself has sort of morphed into an additional new weird symptom that I've really taken notice of just in the last couple of days.  I get my lefts and rights confused and imagine/remember things in sort of mirror images of themselves.  It's BIZARRE.

I met my friends Carly and Denise for dinner the other night, and I pointed out the tasty sweet potato tots on the menu.  Carly asked where they were, and I said bottom right side.  But they were on the left.  (And yes, the tots were GOOD.)

I know the order of the streets in downtown Seattle, as I've been navigating them for years.  Denise and I were driving to pick up Carly, and she said we'd turn on University.  In my head, as we went through Pine, I was convinced that we had already driven through University, as I was picturing that the streets were completely reversed (e.g. instead of Pine, Pike, Union, University, etc., I was picturing them as University, Union, Pike, Pine, etc.).  I've NEVER done that.

And today, I was driving (safely and confidently!) to Breakfast Club, knowing I would need to take an exit off of I-90.  I was mentally preparing for the exit to be on the left side of the freeway... but they're almost ALWAYS on the right, including this one (which I've totally taken before).

This weird symptom is definitely contributing to my lack of sense of direction and ability to orient myself.  I just hope it's temporary and that my brain will relearn all of these things, instead of making me feel backwards and wonky all the time!  :\

Reasons today is great

1.  The spongy swelling on my skull seems to be totally gone.  It's no fun to push on your head and find it to be squishy.  It's way better to feel it boney (and titanium-y)!  Woo hoo!!

2.  I found out that the National Brain Tumor Society holds Brain Tumor Walks in various cities around the US to raise funds for brain tumor research and support.  While they don't have one in Seattle, I'm hoping to fundraise and attend one of the upcoming walks in Portland or San Diego.  I'll be looking for teammates and donations, so I'll keep you posted!  Perhaps I'll even walk without a hat or scarf and rock the half long/half short hair.  :)  Everything else I find has to do with general cancer or brain cancer, and there aren't as many resources and events to support those of us that are (luckily!) non-cancerous brain tumor patients.  So this is important!!!

3.  I am venturing out... in my car!  I drove for the first time on Tuesday when I gave my boyfriend Jeff a ride to the airport.  It went well, and I apparently am a way more cautious and less road rage-y driver now. But perhaps that will subside as I get more comfortable...  ;)  I'm headed to the mall (so clear the roads to Northgate!) to buy a new suitcase today, because...

4.  I leave in a week for a little Boston and New Hampshire vacay!  Then I have my friend Karrie's wedding when I get back, and then I jaunt off to Las Vegas for 1 night for my BFF Carl's coed bachelor party.  I LOVE travel and fun celebrations!!

5.  It is my friend Sydnie's birthday today!  Tomorrow is my sister Lisa's birthday, and Saturday is my cousin (and guest blogger) Stephanie's birthday.  Also, Monday was my friend Courtnie's birthday.  Such a great week of birthdays for some of my favorite ladies!!  Love you!

6.  We finally got our Seahawks season tickets renewed, and we were able to move 1 section over (towards the 50-yard line) and 2 rows down.  Upgrade!  Ka kaa!

7.  I am continuing to feel good!  I am feeling almost normal (which, according to Carl, is even better than before I had surgery! ha) with just some occasional lightheadedness/dizziness and incision pain.  My sleep is SUCKING though, so I'm feeling the repercussions of crappy sleep.  But my eyes and head are feeling mostly good, and I'm feeling confident about my return to work on Monday.

Physical healing

So, emotionally and brain function-wise, I'm definitely getting better.  Here's a quick update on my actual body itself, which is also improving:

My incision has been healing nicely but is still super crusty (sorry, it's gross, I know).  It feels bruised when I push on the area but doesn't really hurt much otherwise.  Every once in a while there are a couple spots that like to flare up and tweak at me, but they're also the spots that aren't healing quite as quickly and are crustier, so it's somewhat expected.  I can lay with any side of my head on the pillow, although sometimes long periods of time laying down does bother it (but not much).  I'm only taking acetaminophen, maybe one a day, for the pain.  And I have to leave the crusties alone, per doctor's orders.  Doesn't itch though!

My hives are basically gone, although the rings on my torso (from the adhesive on the monitors in the hospital) are still visible.  They're not unhappy though, so while they look odd, all they really do is look funny.  They keep fading... slowly.

The right side of my neck is still a little tender, and my right jaw hinge is sore if I open my mouth really wide.  They're both from the wonky position they had me in during surgery.  I'll be happy when my neck is back to normal though.

My left wrist had an arterial IV in it, and they seemed to have difficulty getting it in (although it was put in after I was under anesthesia, so I didn't witness or feel it, luckily).  I have 4 little spots where they tried (all but 1, unsuccessfully) to do the IV; there were more that have already vanished.  I looked like a human pin cushion right after surgery.  The inside of my wrist was SUPER bruised from it too.  I'm talking blue green yellow all colors of the rainbow bruised.  It doesn't look bruised anymore but still feels bruised if you put pressure on it, and I can feel it if I bend my wrist all the way back.  It may have been the worst bruise of my life.  It was a gross one.

Other than that, I'm pretty good!  And even the physical healing I still have left to do isn't much.  My hair is slowly growing back and my head is looking more brunette and less skin-colored every day.  When I wear my hair down with a hat or scarf, you'd never even guess that half my head was shaved.  I got SO lucky with the hair they left on my head!!  Some people think I could just pull my hair back into a ponytail or bun and totally cover the bald areas, but I'm not so confident in my hairdo-ing abilities.  I think I'll likely still keep the hats and scarves around for a bit.  :)  I'll try and take some pics to post soon.

Feeling GOOD

As I enter my 4th and final week of being a lady of leisure/tumor vacationer, I am finally starting to really feel close to normal.  Woo hoo!!!!  Besides my migraine distraction, I've had a bunch of really good days lately.  Just a bit of lightheadedness and dizziness on occasion, but I feel like it's definitely lifted.  My vision and focus has also improved, as I'm able to read magazines and watch TV/movies without my eyes and head freaking out too bad.  My direction is still a bit spotty though.  And my sleep is AWFUL (although I was told that's normal for someone who was under anesthesia).

My emotions have been MUCH better lately too, and I can tell my body and emotions are much happier without any drugs or steroids in my system.  I think I'm noticeably more upbeat and more stable emotionally.  Hallelujah.

I think a big part of my feeling normal and better has been my level of activity too.  Instead of being confined to my bed and/or apartment, I've been taking walks, enjoying the rooftop, and also getting out and acting like a normal human being.  I went to a friend's baby shower (congrats Heather!!), have had delicious home-cooked meals with old friends from college and new friends from work and life in general, took some more ferry rides, and even caught a drive-in movie.  (The new X Men movie is pretty good.)  Like normal human beings do!  It's crazy!

I think a week from now I'll be ready to get back to work (maybe a little slowly at first, but still) and back into my normal routine.  After all, someone has to get the auditing done.  (Just kidding, Expedia friends...)  ;)

My brain and I are in a fight

I have had a few really good days very recently, as my friend Courtnie came to visit from Portland and I felt pretty normal!  We took a ferry ride, ran errands, and did some shopping (including at all 3 of my favorite stores: Target, Nordstrom, and Easy Street Records).  I felt pretty good and not too lightheaded.  Until... dun dun dun... I got a migraine yesterday.

I am really lucky with my migraines, as I get them SO rarely, maybe once every 2 or 3 years.  Plus, I don't get nauseous or throw up, and I get visual aura symptoms beforehand so I know the headache is coming and I can take my medication to try and minimize its impact.  So we were at lunch yesterday and my vision started doing its weird thing, so we rushed home, I took my meds, and went to sleep.  I definitely got the headache but it wasn't as bad as it could have been, and I was (somewhat and slowly) back on my feet within 4 or 5 hours.  It was not a bad one.

Besides having a migraine hangover today (where my brain feels sore), I'm reeeeally hoping that this was my 1 migraine for a while and just coincidentally happens to be right after my surgery, rather than becoming a more frequent thing.  Please keep your fingers crossed that this was a rare deal and I will NOT start getting migraines more frequently.  Sigh.

And, while I'm on the topic, allow me to get on my soapbox real quick.  If you are posting on Facebook that you're having a migraine, YOU ARE NOT HAVING A MIGRAINE.  Seriously.  Posts like that make me really mad, as migraines are a real neurological condition that should not be taken lightly.  And if you were really having one, you would be nowhere near a computer screen or lights or sounds or people or anything.  (Okay, I'm done...)

The situation

While I may enjoy Jersey Shore, let me start by saying I am speaking about my specific situation and not The Situation, just to clarify.

But I DO love me some John Mayer!  Holler!!

John Mayer distracts me, and I digress...

The day we fell in love, adult braces and all

Sorry, back to the serious stuff...

People have asked friends and family about the severity and details of my tumor and situation, so I wanted to share what info I have.  I am not an expert (except in John Mayer... sorry, still distracted) and this is my understanding of my tumor and tumors in general, from talking with my doctors and living with an unwanted visitor in my brain.

Brain tumors are a bit different than tumors elsewhere in the body.  Other tumors are more black and white and more easily fall into the cancer versus non-cancer and benign versus malignant categories.  Brain tumors are not necessarily that clear.  

It is my basic understanding that cancer means that tumors in one area of the body cause tumors in other areas of the body (to really dumb it down).  Brain tumors are not typically cancerous and are not usually caused by (or cause) other tumors.  Some can be cancerous; mine, luckily, is not.  It is having a big party in my brain but luckily has not invited any other organs to attend.  It's a very VIP party.

Brain tumors are also not easily categorized as benign (good/harmless) or malignant (bad/harmful), like other tumors can be.  They fall into the level/stage categories like other tumors; mine is a 2 out of 4.  However, there isn't really any type of brain tumor that is straight-up benign and can be ignored or forgotten about.  Rather, they're lower (more benign) or higher grade (more malignant).  Mine is/was well-behaved and low grade, meaning it's not growing or slow growing and not causing too much trouble.  Lower grade tumors may also not yet require additional treatment, like radiation or chemo.  But all brain tumors, even the more benign ones, will most likely grow back over time.  There is always a possibility (and likelihood? not sure) that tumors will become more dangerous over time too.  My tumor could grow back more aggressively or be a higher stage; I'd need additional treatment then.

So, the moral of my tumor is that it's 1) not cancerous and 2) low grade/more benign.  However, the 2nd part of that sentence is only true currently and could/will change.

As my favorite loverboy John Mayer says about me, my body is a wonderland.  If only I could kick my unwanted tumor groupie out permanently, life would be even more grand.  

(You all know JM was bound to make an appearance on here eventually...)  ;)

North Central Washington's finest

I have had a lot of wonderful friends and family visit me, bring me dinner, send me flowers and cards and emails, and generally show their love and well wishes, and it's been pretty amazing.  I have to give a special shout-out though to a small handful of people: a group of my closest friends from high school.  Casey, Ryan, and Alissa came all the way from Winthrop and Chelan (well, and Green Lake) to hang out with me on my rooftop deck and grab some dinner.

Some Old Goats enjoying tasty Siam on Eastlake Thai food

Casey is an EMT (or paramedic? I always get those confused) in the Seattle area, Ryan owns and runs 2 successful restaurants in Winthrop, and Alissa dominates HR at a fruit shed in Chelan.  These guys are some of my best friends from back in the day and really made my day by driving hours, bringing roses and brownies, and just keeping me company.  You guys are awesome.  :)

And side note, if you're ever in the Winthrop area, you must have dinner at East 20 Pizza.  Ryan's team makes up some GOOOOD pizza!  I recommend the Asian chicken one, with hoisin sauce and cashews.  YUM.  Plus, Pearl Jam ate there once, so you can perhaps get your fill of celeb sightings. ;)

My "new" (temporary...?) reality

Before surgery, I was told to expect headaches, incision pain, and feeling VERY tired.  When I asked if there would be differences with the function of my brain, my doctors told me that they didn't think there would be any differences.  Perhaps I was naive to think that I could get a craniotomy (your vocab word for the day) and have them judo chop my brain open without any consequence, but there HAVE been differences.  It is VERY bizarre to have your brain function differently than you've known your entire life, and besides the ridiculous emotional toll, adjusting to the differences has been pretty challenging for me.

I am lightheaded and slightly loopy and dizzy nearly ALL the time.  It gets better and worse, depending on if I'm moving quickly or have been resting, and I've had a couple mornings where I've felt totally normal ("old" normal!) temporarily and they have been great.  But 99% of the time I'm on the lightheaded side and a little out of balance.  Hopefully this will continue to get better over time (and I think it will).

My eyes don't focus quite like they used to and get tired pretty easily, but it's getting better all the time.  I still haven't read any books but am able to flip through magazines with articles now (but I do love my Us Weeklys too, of course).  I'm able to watch more television too without my eyes getting tired.  Besides the lightheadedness, my eyes are the part that make me the most nervous about returning to work.  They are getting better every day though, so I'm hopeful and confident that I'll be able to transition back to work after the next 2 weeks of resting.  My tumor is in the vision part of my brain, so it's not entirely surprising.

I had issues with my short-term memory, especially right after surgery.  I feel like my memory is just about back to "old" normal, which is GREAT.

The other big difference I'm continuing to adjust to/deal with is my sense of direction and ability to orient myself.  Before surgery, I had a terrible sense of direction (as you all know from me turning us in the wrong direction or getting us lost, all the time).  I seem to have lost what little sense of direction I had.  This is NOT good.  I've lived in my tiny 460 square foot apartment for 3.5 years, and I had one night where I went to go to the bathroom.  When I came out and turned the light off to my dark apartment, I could not figure out how to get back to my bed.  I literally had to turn a light back on, see where I was standing, and figure out how to walk the 12 feet back to my bed.  I also come out of my front door and have to think about which direction to walk to get to the elevator, even though I should be able to do that in my sleep.  I walk down streets I've walked a hundred times and have to check street signs and really look around to find places I've gone plenty of times.  I can't picture driving directions, even on streets bordering my apartment that I've driven a thousand times, until I'm actually at the intersection itself.  (Side note: I'm not driving yet, but have given directions to friends that visit, and it's not easy.)

Mood wise, I'm improving but still feeling sad a lot of the time.  I think I'm a hot mess of emotions and hormones and drugs and steroids and physical recovery and it's gotten the best of me.  I'm hopeful that things will keep getting better though, especially as the drugs and steroids continue to get out of my system.  Getting out into our current Seattle sunshine and breathing some fresh air helps me a lot, so I spend a fair amount of time on my building's rooftop deck or taking short walks around the area.  As long as I don't get lost...

In mourning

I woke up really early this morning feeling incredibly sad, and I think I've figured out why the news about my type of tumor hasn't been reassuring or good news to me.  I miss my pre-tumor (or, at least, ignorant to it) life.  I am sad for the carefree me whose biggest stress was my daily commute or people who walk too slowly or having to pick the cilantro out of my dinner or flight delays or typos.  I long to be that person who didn't have to worry about mysterious bad cells in my brain that one day will make a decision to attack me.  And they will.  Someday.  It is not a good feeling knowing they are there... waiting.  And I just have to wait for them.  I realized through all of this that, given a choice, I would not want to know how or when I'm going to die.  I feel like that choice has been taken from me and instead will be presented to me, whether I like it or not, at some point in my life, perhaps earlier than I would like to have it.  And right now, I don't want that.

Lance Armstrong talks about when he started chemotherapy, another chemo patient told him, "You don't know it yet, but we're the lucky ones."  I think about that quote a lot, and I really hope I become a true believer in that... soon.  Right now I'm just sad and feeling sorry for myself, and I don't want to feel this way.  Today, I just really miss the old ignorant oblivious me, who didn't have stupid things like brain tumors to worry about.

Could I BE wearing any more accessories?!

The hives block party that has taken over my body continued to get worse today, so I went back into the hospital and got a new mix of delicious pills to hopefully reclaim my lovely pale skin back to its pale non-red and non-bumpy glory.  I'm glad to report that the hives are already responding and starting to go away.  I'm not sure if you know HOW MUCH of a downer it is to get through something as scary as brain surgery, only to have your body say "well too bad! screw you! it's rash time!"  It really affected me, and the slow vanishing of my hives now is having equally uplifting improvements to my attitude.

My friend Sydnie picked me up earlier to today to take me to the hospital, and I was sporting a new hat, a scarf (to cover my hives), a jacket, and sunglasses.  I looked like I was on the run from paparazzi, according to Sydnie.  It reminded me of that Friends episode where Joey puts on a ton of clothes on top of each other and says, "I'm Chandler Bing.  Could I BE wearing any more clothes?!"  I felt like that today, except it was "Could I BE wearing any more accessories?!"

The male version of me today

I'm still not breathing a sigh of relief about the results of my pathology, but I'm sure as I continue to adjust and adapt I'll feel more thankful and lucky about the prognosis.  I think I still just need a bit more time.  But things are improving, so that's good.  :)

I'm looking forward to a hopefully sunny weekend in Seattle with friends, hats, and clean shampooed hair.

The news

I'm keeping this short-ish for now, as today was completely draining and I have finally really hit my mental and emotional capacities.  Really.  I had my follow-up appointment with my neurosurgeons today.  I'll add more details later when I have the energy.

They got most of my tumor out during surgery but not quite all of it (as expected).  There are also some tumor cells left in the surrounding tissue around where my tumor was (also quite normal/expected).  My tumor is a grade 2 astrocytoma.  For now, I don't need additional treatment.  We will just wait and monitor it.  Once it grows, and someday it will, we'll need to treat it.  Likely with radiation, chemo, more surgery.  It was a well-behaved tumor in my head, but it could grow back more aggressively in the future.  We just have to wait and see.  But for now, this is good news.  Or at least as good as we could have hoped for.

The doctors also told me I had a tiny stroke during surgery, which they didn't know until it showed up on my post-op MRI.  We have no idea if it's impacting me and probably never will.

I got my stitches removed and am SO EXCITED to wash my disgusting greasy hair tomorrow for the first time.

I developed an allergic reaction yesterday to the anti-seizure meds I've been on (UPDATE: and the adhesive used on the monitors they stick to your body in the hospital), so my body is currently broken out in disgusting angry red hives.  We're talking entire neck, plus face, torso, sides.  It itches and looks disgusting.  So that's been a bit of a bummer, to say the least.

I haven't googled my tumor and don't plan to, and I really do not want to hear about the interesting facts or stats people find on these tumors.  I'm just putting that out there now.  Every tumor is different and there's no way to predict how mine will act, how long it'll stay quiet, how quickly it'll turn my life upside down again, etc.  I appreciate everyone's well wishes and will get back to everyone as I'm able.  Right now, I'm just trying to process.  And not itch my hives to death.

My sister and cousin were happy at the news today and wanted to celebrate, but I don't feel like celebrating.  I don't feel relieved.  I'm sure that will come in time, but for right now, I'm just completely drained and exhausted and not quite ready to have to face the fact that I will live with this brain tumor condition for my entire life, however long or short it may be.

Thank you to everyone for your support, and please understand when I don't reply immediately to messages.  I'm just trying to keep things together.  I am exhausted.