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.

Happy anniversary to meeee!

May 23rd.  It's a big day for me.  One year ago today, I was at UWMC having brain surgery.  Brain surgery!!!  It still blows my mind, a year later.

The day I officially became badass, aided in part by Coolio braids

I just re-read all of my blog entries from the day of surgery (courtesy of guest blogger Steph) and through my pathology appointment.  What a crazy time.  Sometimes I still feel like things are crazy, and I'm fully of the belief now that life is crazy.  It's nuts.  And I am so, so lucky for all that I have in life.  Yes, there's a little brain tumor hanging out in my head.  But man, I have so much more to be thankful for.  I am a very lucky girl.

With my lovely lady friend Casey in Austin this weekend... life is pretty good

I'm not doing much to celebrate/recognize my anniversary today, as I'm still in Dallas for work (but looking forward to heading home to Seattle day after tomorrow).  However, I am thinking of having an informal happy hour at somewhere in Seattle on the day of my 1-year MRI (Thursday, June 14th).  I'd love to celebrate a year of clean MRIs with friends.  Plan to join me (I'm knocking on wood so as not to jinx myself) after I get the news of a good scan!  :)

Oh, and if you DO want to do something today, please make a donation to the Portland Brain Tumor Walk.  I'm really excited and am still quite a ways from my goal (which is $1 higher than I raised last year).  Thank you!!!

It's not rocket science

I read Gawker on a daily basis during my bus commute, and it keeps me up to date on happenings and snark out there in the world.  This week they posted a fantastic little article about a craniotomy that was live tweeted.  It's like "Brain Surgery for Dummies."  Might I recommend you check out "Brain Surgery: A D.I.Y. Guide"?!?

Borrowed... okay, stolen (allegedly!) from Gawker

Please note: I did NOT click on any of allegedly and potentially graphic links within the article, because I do not care to see live surgery pictures or what have you.  But otherwise, I loved the article.  I think you will too.  ;)  And I don't know who only gets a 2" by 2" square of hair shaved; some of us are much more badass when it comes to that (links to my incision money shot... you've been warned.).

This weekend includes fancy dinner with friends tonight, Breakfast Club tomorrow with an possible pedicure to follow, a Stupid Cancer picnic, a homecooked meal, and a little ol' flight to Dallas for 2 weeks (with a weekend in Austin thrown in for good measure).  I hope you all have a great weekend too!

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...

I almost forgot...

Today is exactly 6 months since my surgery.  It is CRAZY how fast time passes.  I can remember the day I got the "we think it's a tumor" phone call and the day I decided to go ahead with surgery and the day I went into the hospital for surgery like they were yesterday.  Let's hope that the next 6 months, and the 6 years after that, and even the 6 decades after that go by just as fast and without any tumor drama.  The older I get and the more time that's passed, the more life I've lived.  And that's a great thing.

That's all, I'm off to bed.  Just wanted to recognize this.  :)

Timeline of the best year ever (*sarcastically*)

My annual August to August day planner/calendar has recently expired, so I'm shifting to a shiny new August to August planner for the next year. Yes, I still use a paper planner. I would be more devastated if it was lost than if I lost my iPhone. But anyhoo. Since my documented timeline of events is about to go out of commission, I wanted to get all the important dates down in here, in case I want them in the future. So this is less of a "hey, what is Sara up to?" blog entry for my readers, and more of a note-taking reference for me for later.  But if you're into lists of dates and events, then by all means, please enjoy...

• January 3: I turned 30 *cue suspenseful music of doom*
• January 20: My left arm freaks out, prompting me to get it checked out
• January 21: Doctor at UW Belltown Clinic refers me to neurosurgeon at NW Hospital (Dr. K)
• January 26: 1st appointment (of many) with Dr. K
• January 28: 1st MRI (of many)
• February 3 through March 23: An assortment of tests are performed (EEG, sleep-deprived EEG, echocardiogram (with and without bubbles), blood work, MRIs) and analyzed by Dr. K, told I could have a tumor but he doesn't think so, clean bill of health on everything else
• March 30: Appointment with epilepsy neurosurgeon at Harborview (Dr. Mi), after referral from Dr. K; told he'll get in touch in 2-3 weeks after showing my MRI scans to a neurosurgeon friend
• March 31: Received the "we think it's a tumor" (in those exact words) phone call from Dr. Mi, after he consulted with neurosurgeon Dr. H (definitely NOT 2-3 weeks later)
• April 15: 1st appointment with Dr. H at UWMC, whose opinion is to do a biopsy
• April 20: 1st appointment with rockstar neurosurgeon Dr. S, whose "2nd opinion" is to do surgery (which Dr. H agreed with, at this point)
• April 27: Scheduled surgery
• April 28: Told by Dr. K to "be brave"
• May 6: 1st appointment of 3, weekly, to talk with Dr. G, a psychologist (not sure if she helped much though)
• May 23: Stinking SURGERY, with Drs. S, H, and P (my resident neurosurgeon)
• May 25: Discharged from hospital (1 night ICU, 1 night floor)
• June 1: Pathology appointment with Drs. H and Mr (my neurooncologist) - verdict is stage 2 astrocytoma, with plans to monitor (no chemo or radiation for now), most removed but not all (booooo)
• June 20: 1st day back at work (reduced 6-hour days for 2 weeks)
• August 20: Portland Brain Tumor Walk
• September 1 (upcoming): 1st quarterly MRI and results appointment with Dr. Mr

Isn't it NUTS how quickly things can happen and life can change?!  Sheesh.... still blows my mind.  Hopefully it blows my mind hard enough to blast that tumor right out.  But that's TBD.  :)

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!  :)

I'm hoooooome!!!!

I'm home, 2 days after freakin' brain surgery!  Can you believe that?!?!  When they said I would have a fast recovery period, they really meant it!

First off, I have to thank my cousin Steph for all of her timely, accurate, and entertaining updates to my blog.  I've gotten a ton of feedback saying that people really liked the updates.  Steph, you rock.  ;)

I am also owing big thanks to my sister Amy as well, as she and Steph are going to be taking turns staying with me for the next few days.  I'm not that entertaining these days and like to lay around eating soup and pudding, so they are awesome for just hanging out and helping.  Hopefully my 1-month free NetFlix trial streaming through my TiVo will help make this more exciting for them too.  :)

Overall, I'm feeling really good.  I've had a headache on and off, and I have a couple pretty tender spots (one at my right jaw hinge and one of the right side of my neck) which I think are from the very weird position they put me in during surgery.  Painkillers have been helping (plus foods not requiring much chewing, as it hurts my jaw).  I'm in very little pain and have been able to control it well.  All of the doctors at nurses at UWMC were pretty great, and I was surprised to be sent home so quickly.  I do feel confident though and have a schedule written up for my new drug regimen, so it should be easy to stay on top of things.  My incision hurts a bit at times, and I'm definitely on the light-headed side of the spectrum, but I'm able to walk around normally.

I'll go meet with my neurosurgeons next week (Wednesday) to get the results of the tissue analysis as well as my prognosis.  Keep your fingers crossed for that appointment.  I'm a little bummed, as I talked to Dr. S this morning.  He looked at my after-MRI that I had done yesterday, and it appears that while they got most of the tumor out, they didn't get the whole thing.  Sigh.  I think it was a safety issue, and they were able to remove as much as they felt safely could be.  I think he said something like 90% came out... but I might have remembered that wrong.  Having some tissue left in my head makes it more likely that I'll have to have additional treatment (like radiation and/or chemo) but we'll just have to see.  I'm not worrying too much until I actually have something to worry about.  In the mean time, I am just SO RELIEVED to have made it through surgery without complications and feeling so good!!!!!  Plus I have a pretty hot hairdo of 4 braids right now.  haha

I know that some people out there want to see my incision, and some don't (as it is graphic), so I've uploaded a picture of it to a page on my blog that you have to actively click on to see.  If you don't want to see it, don't click; if you do, do!

Link to the graphic picture of my large head incision: proceed with caution!!!

Thank you again for all of your love and support.  I'll post more details and info soon.  And if you have any questions, please feel free to send them my way, as I'll probably put together a post-surgery FAQ page one of these days.

THIS JUST IN

Sara is being discharged from the hospital today and gets to go home!

If any of you were planning on visiting her at the hospital today, please hold off as you will be able to visit her at home shortly.

Amy will be heading home with Sara this afternoon and I will let you all know when she's all settled and ready for visitors.

Stay tuned...

~Steph

Party on "The Floor"

Or at least that's what the who's-who of docs and nurses are calling the regular hospital room area where Sara has now taken up residence.

Sara is officially situated in her own private room and she is feeling good. The doctors removed her head bandages and she is now sporting a chic cotton cap. She is eating solid foods (and specially ordered chocolate milkshakes) and is taking short walks around "the floor" for a bit of exercise. The doctors are pleased with how well Sara is bouncing back. It is looking like she may get to head home on Thursday.

If you would like to send any flowers or well wishes to Sara, she is located in the NE wing on the 4th floor of the University of Washington Medical Center on Pacific Ave.

Visitors are welcome anytime starting tomorrow (Wednesday 5/25), however please keep in mind that she is napping off and on and the visits should be kept somewhat short. Sara is in great spirits and is excited to see her friends!

Sara has been able to check her phone and email today and wants to thank everyone for all the support and well wishes!!!

I will continue to keep you updated on Sara's progress and any new developments.

~Steph

Day 2

Sara has been doing well this morning. She made it through her first night, with doctors waking her up every hour to check her vitals. She's been napping off and on all morning and when awake she's been taking breaks sitting in a chair and was even making a few phone calls.

She is ready to be moved to a regular hostpital room, the nurses are just waiting for one to be ready for her. As soon as she is moved I will have more info for you.

Thanks to everyone who has been following her progress. Sara had over 800 hits on her blog in the last 24 hours and she is definitely feeling the love!

More to come.

~Steph

Update #5

It's been a long day, but we were finally able to visit Sara in the ICU. Family (and Sara's BFF Carl) were allowed to go in two at a time to see her. She was awake, alert and in great spirits. And in true Sara fashion, she was even joking about an ICU all-night party with the nurses. -I think she was really enjoying her morphine drip. :)

Sara is feeling and looking great, and rockin' some sweet braids, after the doctors judo-chopped that tumor out in the O.R.

Carl and myself hanging with Sara in her room. (Sara and I were waiting for "hot doctor" to make another appearance.)

All-in-all surgery appears to have gone as well as we could have hoped for. Sara will be spending the night in the ICU so they can continue to monitor her. They are expecting to move her to a regular hospital room sometime tomorrow.

As soon as Sara is moved out of the ICU I will let you all know and also include where you can send any flowers/gifts as well as let you know when she is feeling up for visitors.

Again, THANK YOU ALL for all the thoughts, prayers and support throughout this whole process and especially today. Words can't express how much your support means to Sara and our family.

XOXO

Stephanie

Update #4

About 50 minutes ago we got the opportunity to speak with one of the surgeons (Dr. H).

Once the doctors moved Sara to recovery they woke her up. She was awake and speaking to them and moving her limbs, with some coaxing from the doctors. She is expected to be a bit groggy for a while. They will continue to monitor her as she slowly becomes more alert.

Based on our talk with Dr. H, it sounds like at first glance the doctors think that the tumor cells looked abnormal and they think it is a low grade tumor. We don't know yet what that means as a the full biopsy is required to determine the severity and next course of action.

The doctors were able to go in between the two halfs of her brain to remove the tumor from the right side (near the area that affects vision in her left eye). The doctor reiterated that Sara did well in the surgery and is expected to make a full recovery from the surgery.

THIS JUST IN:
As I type, we have just been informed that Sara has been moved from recovery to the ICU. Family is now able to visit her (one at a time). Off we go!

More to come...

~Steph

Update #3.5

Sara is officially out of surgery and in recovery.

Update #3

Sara is almost out of surgery. She's heading into the ICU shortly and probably won't wake up for a few more hours.

It sounds like the tumor was a bit deeper than expected but the surgeons had a safe route to get to it. It measured about 2 centimeters and they felt like they got as much of it as they could. The results of the biopsy will come in next week. As with anything there are no guarantees that there aren't cells left behind, but hopefully the biopsy will provide a better picture of what we're dealing with and what the next steps will be.

The doctors said Sara did well in the surgery (and is sporting a "generous incision") and expect her to make a full recovery from the surgery.

Stay tuned for more updates as we learn more.

~Steph

Update #2

The surgeons have reported that they just finished up removing the tumor and are preparing to put everything back together. They stated that all went well during the removal and that Sara tolerated it very well. They plan on giving us another update in about an hour.

It sounds like Sara handled the toughest part with flying colors. There's still more to go so keep those positive vibes coming her way.

Thanks again to everyone for your positive thoughts and prayers! I will continue to keep you posted.

~Steph

Update #1

We just received word that Sara's surgery has just begun and she is doing well. We expect to receive another update around noon.

~Steph

They don't call it a waiting room for nothin'...

Surgery Day!

Good morning to all of Sara's fans and followers,

Today is the big day. This is Stephanie, Sara's cousin, reporting live from UWMC. Sara and the family arrived early this morning at 5:15am to get the pre-op procedures rolling. Amy, Sara's sister, stayed with her during the first part of the morning which included a bit of hair shaving and a pre-surgery MRI. After the MRI I joined Sara in the patient surgery waiting area where we met some anesthesiologists, other nurses and Dr. H (one of the surgeons) came and spoke with us to let Sara know how the procedure was going to go and what she could expect afterward. Sara was in good spirits throughout pre-op and was given a little "happy juice" to help calm her nerves before they wheeled her out around 7:45am.

The doctors said that it would be another hour or so before they start surgery as they would put her to sleep and complete some additional pre-op procedures before the actual surgery begins. The doctor scheduled 4 hours for the surgery so, if all goes well, Sara may be out of surgery as early as lunch time. :)

Please keep Sara in your thoughts today. She is in great hands and we are feeling confident that all will go well. Stay tuned as I will continue to post updates as we receive them throughout the day.

On behalf of Sara's family we want to thank you all for your thoughts and prayers!
~Stephanie

Mark your calendars yo!!

It's official... I'm having brain surgery!  The big day is Monday, May 23rd around 5am.








I met with neurosurgeons Dr. S and Dr. H again today and also met Dr. P (the resident that will be in my surgery) for the first time.  We got lots of detailed information about the procedure itself, and I'm feeling pretty good.  I'll go in early, do the prep, do the surgery, and come out to recovery and the ICU late that afternoon/early evening.  I'll be able to see my family once I'm out of recovery.  I'll stay in the ICU for 1 night and then transfer out to a non-ICU bed for at least 1 night, maybe more, depending on how it goes and how I'm feeling.
For anyone that's thinking of visiting me in the hospital (and you are totally welcome to, but doooon't feel obligated, really), Tuesday the 24th and possibly Wednesday the 25th would be good days to do that.  I need to find out what visiting hours are and will share that as it gets closer.  
On a related note, I got an email from a good friend's sister's boyfriend's personal training client (whew!) who has worked in the brain tumor field for over a decade and has no idea who my doctors are, and she says, "I highly recommend Dr. S at University of Washington Medical Center - he is an excellent neurosurgeon and I would put my own life in his hands if I had to. There is also a neuro-oncologist at the Fred Hutch Cancer Research Center who is excellent - Dr. Mr."  Well friends, I am happy to say that these are MY very doctors!  Dr. Mr also moonlights at UW.  Like I've said before, I'm in great hands!