6 month update

6 months ago today I had my head sawed open and a tumor the size of my first thumb joint removed.

6 months later, I spent the weekend before my half-craniversary at a music festival where I worked my way up to the rail for a heavy metal show.

Yeah, I think my recovery is coming along quite nicely.

One of my biggest fears prior to surgery is that I wouldn't be me anymore. That my tastes and attitudes would change. And then not really knowing what parts of the brain the surgery would affect, what if I couldn't listen to loud music anymore? I've never been big on crowds but have figured out coping mechanisms that allow me to go to Bonnaroo and handle being in the middle of 80,000 people.

What if they didn't work anymore? What if I got severe anxiety being around more than 10 people at a time? That really was what freaked me out more than the whole open-skull dealio.

And yeah, in the first few weeks after my surgery, I did get overwhelmed very easily. Being at my sister's house right before my niece's bedtime with Emerson running around like a spaz, the dogs barking, Karl listening to music in the kitchen and some kid show on the TV - waaaaay too much. But that all went away without me really noticing it. My first few concerts, I stayed at the fringes of the crowd, but I went to two shows the first week of July and anxiety didn't even cross my mind. I pushed my way up front for The Chris Robinson Brotherhood and happily lounged in the middle of the lawn for Further.

I did have some worries about Forecastle this past weekend, but decided that I would just handle it the way I did my first Bonnaroo. Keep breathing, look up to the sky when the crowds get to be too much and concentrate on the music. And it worked. I had an amazing time, saw some of the best shows of my life, smiled so much my cheeks hurt the next day, danced so much my feet still hurt.

And, yeah, I was up front for Beats Antique and Galactic

In the pit for My Morning Jacket

  In the pit - and then on the rail - for Clutch

All of which I took one moment at a time. How am I being this close? Can I get closer? What if I'm up close but outside the speakers? And now what if I'm on the outside of the pit? Or right inside? And so on. I also balanced all of this with sitting at the back of the crowds or in the VIP section (we got upgraded for free due to some confusion with our MMJ fan club passes).

I saved my energy for the shows that mattered and enjoyed every minute of the weekend. My legs are not back up to full strength, but they're super close. And my endurance could use a little work. But I was never that far behind my ridiculously long-legged 6'4" brother-in-law and danced nearly as much as my sister so I know that it won't be much longer before I'm fully back to my pre-surgery self.

Overall, it was the perfect celebration of life.

Sheryl Crow's meningioma

Yesterday, a friend sent me an article about how Sheryl Crow has a meningioma. Apparently it was discovered back in November when she was forgetting lyrics to her songs. Lucky for her, hers does not need to be removed right now. And since meningiomas are such slow-growing tumors, there's a chance that she may never need surgery, which would be a fantastic outcome. I'm very happy for her.

What I'm not happy about is how she's wording her public responses about benign tumors.

"it's benign, so I don't have to worry about it"

source

Benign means non-cancerous and usually when you refer to a situation as benign, it means unharmful. But a benign tumor isn't always unharmful. Any odd growth of cells can cause harm, especially if they crop up in a dangerous location.

I consider myself very lucky that my tumor was caught while still relatively small and that it was in a relatively non-dangerous location and my only problems were ice-pick-jab headaches and not being able to move my leg for a few weeks. Others aren't so lucky and lose their eyesight, the ability to be in  crowds due to overstimulation or have complete paralysis. Some people even die from benign brain tumors. And then, of course, there are the benign tumors that develop in other parts of the body and the issues they can cause.

Benign tumors are definitely something to worry about.

"please don't worry about my "brain tumor", it's a non-cancerous growth. I know some folks can have problems with this kind of thing, but I want to assure everyone I'm OK"

source

"Some folks can have problems." To this meningioma-survivor, that sounds a heck of a lot like "sorry you were offended" instead of "sorry I offended you." Maybe I'm being sensitive, but she's a very vocal person. I'm sure she's had media trainings in the past and I'm sure she has a PR rep who told her to make that second statement on her Facebook page. Couldn't she - or one of her people - have realized that with some simple rewording, she could have not offended all of those affected by benign tumors?

"please don't worry about my brain tumor. While benign (non-cancerous) tumors can cause serious problems, I want to assure everyone I'm OK"

my words

See? How hard is that? And really, getting rid of the belittling quotes around brain tumor would've gone a long way without rewording the second sentence.

She learned of her tumor right around the time I learned of mine and I'm sure she did exactly what I did - hit the internet. And in doing so, found all the scary stories and worst-case scenarios. But then she calmed down and realized that hers didn't need surgery and wasn't causing any immediate problems so she got on with her life. Maybe was even able to put it out of her mind. She already talks about breast cancer in just about every interview, I can totally understand why she wouldn't want to add another medical condition to the list. And seems like even mentioning it now was a total slip. Also fine. If she doesn't want to be a meningioma advocate, she doesn't need to be. She's more than her medical conditions. I also totally understand wanting to downplay the seriousness of it - people freak out when you put the words brain and tumor together. And having a benign tumor is definitely worlds better than a cancerous one. Worlds.

But she is in the public eye and thus what she says - and how she says it - means more than it does for the average person.

Brain Surgery Live Tweet

Okay, I think this is pretty darn cool. A surgeon in Texas tweeted live during brain surgery.

http://storify.com/memorialhermann/brain-surgery-live-on-twitter

The first page is just prep for surgery so nothing gory, but beware the second page if you're eating lunch or otherwise squeamish. And there are videos as well as pictures. Videos with sound so you can hear the drills. Glad I was knocked out for that part.

But it's still cool to see because I went through basically the same procedure.

no scarf!

I went without a scarf today to work - my first full day sans scarf. It's pretty darn exciting.

Yeah, I kinda suck at figuring out a smile for self-portraits. I don't really smirk like this in real life. At least I hope I don't. But I almost always do it in my self-portraits.

I desperately need to get my hair cut and have an appointment for tomorrow, but I just couldn't face another day with something on my head. So even with all its puffy-Prince Valiantness, I did it.

Here's my goofy self-portrait smile. I think I look like a chipmunk, which is why I do the smirk. It may be weird, but it's not as chipmunky. My normal smile is not chipmunky.

I did pull the left side back with a barrette, which helps with the puffiness. And I sprayed the heck out of my hair so my comb-over won't un-over.

But you have to really be looking straight down at my head to notice something odd. And even then, you'd just think I had kinda sparse hair. Or maybe that your eyes were playing tricks on you. Exactly what I was hoping for.

I don't know how boys run around with baseball caps on 24/7. My head would always get itchy by the end of the day and I would dread having after-work plans where I had to keep the scarf on. And a hat? Ugh. I had a beret-type hat that was fine in the winter, but then I got a fedora for spring and it was just sweat-city.

So, yeah, this is pretty kickass. No scarf, sunny day, non-itchy head. I'm a happy girl.

May is Brain Tumor Awareness Month

Did you know this? I kinda did from going to various websites and research and boards and such, but overall it's such a non-event. There is a race this Sunday in DC and I've seen it advertised on TV, but I'm not participating and have no desire to do so. I'm perfectly happy to fast forward through that commercial.

Part of it is that I don't want my tumor (or lack of tumor!) to define me. My mom was frustrated that I didn't want to celebrate having had the tumor removed once I was back up to speed. But I was back up to speed, I didn't want to be reminded of when I was stuck on the couch. I probably won't want to celebrate my 1 year anniversary either. Celebrating a successful surgery is also a reminder of having needed to have the surgery in the first place. Too much bad mixed up with my good.

But then I feel guilty for not being more involved in brain tumor awareness. Here I was, a young, healthy person who randomly found a tumor in her brain. And since no one knows how meningiomas come about, even the tumor was random. If I got one, anyone could. And if more people knew that meningiomas exist and more doctors knew to look for them, then more people would have successful outcomes. I was very lucky, others aren't. I should help those who aren't. Right? I know this, I do this for my job for so many other issues but I just can't drum up the desire to do it for the issue that actually affects me. And it's not just the brain tumor. There are other causes out there that personally affect me that I have a hard time publicly supporting - so much so that I'm not going to list them here. If I can do it as a "let's band together and support this concept in general" sort of way, then I'm on board. If I have to call myself out as someone affected, I'm completely mute. I also have a hard time talking about difficult subjects without crying and I hate crying.

That's just it. I don't like looking weak. I don't like drawing attention to my flaws, no matter how unresponsible I am for them. Especially if they're ones that can't be fixed. Even though my tumor was successfully, completely removed, there will always be the chance that it'll grow back. That chance will always be higher than someone who never had a tumor.

And that's also why I'm frustrated with my slow hair growth and why I'm quick to tell people that I'm back to 100% even though my leg does still bother me. When I list the ingredients of what makes the perfect Debbie cake, I just don't want meningioma to be on that list. Sucks.

official all-clear

I got the official all-clear from my doctor last week! Wahoo! I was preeeeetty sure that I didn't see anything, but there were a few white lines that could've kinda maybe sorta been something. But nope, I'm all good.

Forgot to point out before, but did you notice that there's no empty space where the tumor used to be? Crazy how my brain just bounced back. I never saw my CT scan, but I wonder if it was immediate? The tumor was pressing into my brain, squishing things onto itself, so to me it makes sense that it would have just re-expanded. So would that be like memory foam or unlike memory foam? Or maybe a rubber ball is a better metaphor. My brain as a rubber ball. A stress ball.

Right? I crack myself up.

My hair is growing back. The hair on most of my head is a normal length, but the area right around my scar is still struggling. I *this close* to being able to do a comb-over or other hair-trickery and it will be nice to not wear a scarf every day. Though I've gotten much better at quickly selecting a scarf to go with my outfit. At first it took me SO long and I was late for work every day. Now the scarf selection takes just a minute or two, same as deciding on any other accessory.

follow-up MRI - looking good!

I had my follow-up MRI yesterday. Total wreck of nerves all day. My sister went with me to be my backup driver in case I was woozy from the contrast (I wasn't) and was a total sport when I said that we needed to leave my office at 4:30pm. My appointment was at 6:30pm and I had to be in the waiting room by 5:45pm. But here's my rationale for why it could take over an hour to drive up the street:

The hospital is only 1.15 miles away from my office, but it's up Wisconsin Ave on the edge of rush hour. If you know DC traffic, especially Georgetown traffic, you know that it can take 30 minutes to drive those 7 blocks before you turn down Reservoir.

And then we know that the later in the day it is, the more difficult parking can be - the garages are quite small. But we lucked out - we did have to go to another garage, but there was a spot right near the entrance.

And then I had to get to the CCC Building, which is, like, waaaaaay in the back of the hospital complex. One starts singing "over the river and through the woods" going down hallway after hallway. But then since Alison has gone in and out of the hospital so many times, she knew exactly where to go.

So, yeah, we were all checked in by 5pm. And then they didn't call me back until 6:45pm. And then we had to go to the other MRI location (over the river and through the woods again). And then wait for them to be really ready for me. And then the MRI took 45 minutes (standard length of time). And then I had to wait another 5-10 minutes for the tech to make a CD of my images. It was 8pm by the time we go out of the hospital. My sister didn't complain once. At least not to me.

Plus, we got to see the images of my brain over dinner! And seeing my gray matter all gray, no glowing white mass, was worth the 3 hour wait. Though next time I'll budget our time better :)

Pictures are after the jump. For each set, the top picture is from my November MRI and the second picture is from yesterday. I tried to get as close to the same view as possible. Look for my titanium pins and the choppiness of my skull and faux-derma. It's pretty cool.

To my untrained eye, it certainly looks like nothing is there. I am meeting with my neursurgeon on the 9th for his trained-eye opinion and I'll update again after that!

what to take to the hospital - clothing

Number one rule for hospital clothing is comfort. Don't bring anything that's too small, itchy or that doesn't stretch. Bring stuff in colors that make you happy, that are comforting. If you buy a brand new pair of pajamas, bring some old pants that you KNOW are cozy in case the new ones end up sucking. Yeah, I speak from experience. My bright, happy red flannel pajamas made me feel fan-freaking-tastic until I tried to adjust myself in bed. Then their non-stretchiness made them get all bunched up underneath me. And don't get me started about trying to deal with having my blood pressure and blood taken in the middle of the night. I ended up swapping them for some worn-out gray lounge pants and a black hoodie that were a lot easier to deal with. Luckily I also had a bright green shawl so while I was in drab colors, I could drape myself with prettiness.

Because rule number two? Don't bring anything ugly. You want ugly, just continue wearing the hospital gown. Bring colors that make you happy, that are comforting. And, okay, if your stretched-out, faded beige sweatshirt makes you ridiculously happy, bring it. But color is incredibly therapeutic so take advantage. If you don't have pretty colors, bring an afghan or blanket. I also had a body pillow with a brightly printed case that my sister loaned me. I never really used it as a pillow, but its cheerfulness kept me company in the otherwise sea of hospital white.

I also highly recommend layers. Here's my dream hospital outfit:

* lounge pants
* ribbed tank
* wide-necked short-sleeved t-shirt
* hooded sweatshirt
* pashmina/large scarf/shawl

I didn't have the t-shirt so when I was hot, I had to be in just the tank top, which didn't really jive with how I was feeling. A short-sleeved t-shirt would have made life a lot easier when they needed to check my blood pressure, take blood or give me a shot in my upper arm. And with a wide neck, it would have been easy to get over my head even when I was still ginger about it. But then the tank would provide modesty since it's more form-fitting and won't slip down, plus sometimes I got so freaking hot in that room, even when the air was turned all the way down.

The shawl is important for when you're still hooked up to the machines and wearing the hospital gowns. You won't be able to take on and off a sweatshirt or jacket and even pulling the sheets up to your chin could be difficult or pull on your IV lines. But a shawl you can drape however works best - and the jolt of color helps take away from the blahness of the hospital gowns.

And then, of course, I would have a variety of colors in each of these items so I could mix and match at will. Old Navy, Target, Lands End and LL Bean are my favorite places to buy lounge-y type items, but definitely not the end of the list.

Final note - undergarments. I was a little surprised at myself for wanting to wear a bra all day long, but I did. It helped me feel pulled together and - again - more like myself. I think it was because the underwire helped counteract the schlumpiness of being in a hospital bed anyway. That slight uncomfortableness reminded me of my non-hospital life. Plus I didn't often have much notice when I had visitors and it was nice to always be ready.

what to take to the hospital - toiletries

Waking up from surgery, I felt absolutely disgusting. I had all sorts of weird goo on my face and in my hair and my mouth felt like something had died inside of it. My nurse brought me a wet washcloth and some lip balm and it was AMAZING. Seriously - wiping my face was one of the best feelings I've ever experienced. Think I also used the cloth to scrub some of the scum off my teeth. And then my lips were so dry and chapped from the breathing tube and those ice chips did nothing to help.

But I didn't know that I would want my toiletries immediately after surgery. And who knows - you might be different. But just in case, have your family bring them up to ICU when they visit for the first time. If you're following my advice, it should all be in your makeup/Dopp bag. The bag will also will be great because you'll be hooked up to machines and a catheter and not able to get out of bed or even reach all that far.

For that first night, you should have:

* extra-moisturizing lip balm
* Kleenex (the stuff they give you at the hospital is like sandpaper)
* Brush-Ups or other teeth-cleansing wipe sort of thing since it's hard to actually brush your teeth when strapped to the bed & on limited water
* facial cleansing cloths
* face moisturizer
* mouthguard if you use one

Once you're able to get out of bed, you'll want even more stuff:

* face wash
* toothbrush, toothpaste, mouth wash, dental floss
* fine-toothed comb (to get the gunk out of your hair)
* shampoo (for when you're able to shower)
* head scarf/bandana
* barrettes or bobby pins (until you can shower, your hair will be gross, even if you get someone to pick out the goo and even after using the no-rinse shampoo stuff the hospital may give you, and you'll want it off your face)

It's not a ton of stuff, but man, it's a total game-changer. I finally started to feel like myself again once I was able to wash my face and brush my teeth with the products I use at home. I smelled like myself again, you know?

And don't forget your cell phone and charger! Even if you're not sure that you'll be up for using your phone, bring it just in case.

what to take to the hospital - bags

1st in a series about what to take to the hospital and I figured I'd start with how you get the stuff there.

I recommend having a couple of bags. I used tote bags from LL Bean - they're nice and sturdy and can hold a lot of stuff - but any sort of bag can work. Just either have ones bigger than you initially need or bring an empty one because you'll probably leave with more stuff than you came with.

Initially, I had two bags - one bag with toiletries & clothes and the other bag with electronics. I wasn't sure how soon I'd want my laptop or iPod so figured I'd have my family keep that one in the car. Turns out I never wanted my laptop and wanted my iPod immediately, but the real reason I liked having two bags is so I could sort stuff. My family came to visit every day (thank you thank you thank you!) and almost every time I asked them to bring a few new items but never remembered to send them home with stuff. So I ended up with things I didn't need or want anymore. All of that went into one of the bags, which remained on the floor. Then I didn't need to sift through the dirty pajamas or the scarf that didn't really cover my head or the unwanted laptop or the pajama top that ended up being uncomfortable. It helped me keep my room organized and me sane. I was ALL about organization.

Which brings me to my second type of bag. You also need a smallish, personal bag. If you're a woman, you call it a makeup bag.

ebags

If you're a man, you call it a Dopp kit.

ebags

This was huge for me. Bigger than the totes. My makeup bag is a plastic-lined one I got as a bridesmaid gift several years ago and it's nice and roomy and can stand up on its own. I kept a pad of paper, two pens, a small packet of Kleenex, lip balm and cell phone in there. All the little fidgety items you like to have with you at all times, but that are easily dropped (or in the case of lip balm, roll off the table). When the brought my meals, I could just shove everything into my kit and put it on my lap while they got the tray all settled. When people came to visit, I could do the same thing. And if I was all perfectly arranged in the hard-to-get-yourself-perfectly-arranged hospital bed, I barely had to move to get anything I needed. It was also key for when I sat in the chair instead of the bed. My room was very small and so moving the tray over to the recliner was a hassle. But I didn't need it because of my lovely pouch!

If you don't have a large makeup bag, I highly recommend getting one. Not only is it useful for your hospital visit, but they're also great for travel. Etsy has some really cute ones, but you can also find them at all sorts of places like ebags.com, Target and CVS.

2 months post-surgery update

So Monday will be the two month anniversary of my surgery. How am I doing?

I went back to work on 2/27. The first week and a half I was doing half or 3/4 days, but by the end of that second week, I was doing full days with mentally taxing projects with no problem. Well, I was extra cranky, but I made it through.

Walking is no problem at all, even in heels. Stairs don't give me pause. My ankles seem quite secure. I had three physical therapy appointments and the third was just the therapist testing me to prove that I didn't need the scheduled fourth. Doing the exercises definitely helps, but I think my body is also just recharging on its own.

Because I don't have any of these big problems, I can now notice the small problems. The ones that don't matter to the big picture. Like I can't bounce my right leg as quickly as my left. Try it. I asked at mah jongg - everyone else could bounce their legs at the same speed. But I can only do it slowly with my right leg. It's a nice, steady pace so it's not like I can't bounce at all. And the other night I was able to get it going for a few seconds, but couldn't repeat it. So I've been bouncing my leg almost nonstop to get it to remember how to do it. And maybe when that gets back to normal I'll be able to easily skip again. Again - ha! Not like I was prone to skipping again. But a girl can change!

My legs also seem to be back to having similar sensations. Oh yeah - haven't really talked about that. It's not something I notice all the time, really just when I'm in the shower or getting a pedicure (I've had three in the past two months! Totally baller) so by the time I'm somewhere where I would tell someone, I've forgotten about it. In the hospital, they would poke at my legs and ask if it felt the same on both, and it did. This is more of a tingling sensation only in my right leg. And when getting my many, many pedis, my right foot was MUCH more ticklish. But last night I got a pedicure and my feet were equally ridiculously ticklish and no extra tingles going on. So that's good.

My hair is growing back and I'm taking extra vitamins to encourage hair growth. Not 100% sure that they're helping - I've always had long hair so don't really know how fast my hair grows when it's short anyway - but they are making my fingernails grow like crazy so I imagine they're doing the same thing on my head. The scabbing is 99% gone and the hair over where the majority of the scabs were is still pretty short (and of course that's the part that's the most visible to the casual observer). So I'm still wearing a scarf every day to cover it up. But I've bought a few more scarves and borrowed even more (thanks Carey and Alison!), which helps make it not such a drudge.

Mentally, I'm back to normal. Other than the whole hair issue, I can easily forget that I even had a tumor and subsequent surgery, which is why this blog has been so empty. My mom gets frustrated because I'm not giving regular updates, but there isn't a lot to update. Life is good and back to normal and Normal Debbie didn't give regular updates on her status, you know? It was this whole flurry of activity, but now I'm back to a normal pace of life. And that is such a good thing. I have been thinking about my ex-tumor more this week than before, but that's probably because of the upcoming anniversary. I do tend to forget that I'm remembering an anniversary of something unhappy until it's on top of me or even until it's past. And then I'm like ohhhhhhhhh, THAT's why I've been so weird!

And as I stated above, I'm back to playing mah jongg. And I'm back to kicking ass at it. The first few hands of the first game, the card was a bit blurry (it's a lot of tiny numbers in blur-inducing bright colors), but then everything cleared up and I was back to being able to think through my hand and to guess what hands everyone else is playing. Love this game, love that I can do it again.

I'm also able to tackle big, complicated budgets at work. I'm all about Excel and my budgets often include multiple projects on multiple tabs, linking cells, high and low ranges. Just a lot of details. And I very successfully did one of these monsters last week. Maybe it tired me out more than normal, but if so, not by much. They're energy-sucks anyway.

The next two weeks are big ones for me. My first real concert on Monday (I saw a local band at the cafe in town a few weeks ago, but that was more of a gathering than a full-on show) and then my follow-up MRI on the 28th. I'm super excited for the MRI because I KNOW it's going to be clear and I can't wait to have the confirmation. And I'm also interested to see how my body reacts when it's not being attacked by a tumor and vicious headaches. My sister is meeting up with me so she can drive home, just in case.

And I'm also planning several trips for this summer, one of which involves flying. That'll be fun - to see if these titanium pins really won't set off the airport scanner. Supposedly they're too small to do so, but, you know, it'll be good to test it out.

staples GONE!

So exciting - my staples were removed on Wednesday. I had 16 staples in my head and for the most part, they didn't bother me at all. But the past few days, I could just feel them. They didn't hurt or itch or tickle or anything like that, it was just this undefinable weirdness. And as I was getting more comfortable showering,  I would touch them more, which just increased the weirdness. It was time to get them the heck out of my head.

I had my follow-up appointment with my neurosurgeon and to start things off, he took the staples out.

 source

Again, more weirdness. It didn't hurt at all, but I could definitely feel it. It felt like he was just snipping the staples, though I didn't feel the tool touching my head and didn't feel the staples actually coming out.

He also started talking to me about the pathology report during this and I was trying to concentrate on what he was saying while taking notes but was totally distracted by the odd feeling I had going on because of the removal.

Yeah, it's all a bunch of weirdness and it continued after the staples were removed. I was fine during the appointment, but then I put my slouchy beret back on and my head was not having that. But, you know, didn't want to show off my tonsure to the rest of the hospital so it had to suck it up. And even after I got home and took the hat off, there was still this odd tingling, verging enough towards the pain line that I took some Tylenol. And right now I'm wearing a silk scarf because some friends are coming over and the odd tingling has come back, but it's pretty far away from the pain line - just highly distracting.

Pictures after the jump!

benign

Benign. It's a good word, right?

And as far as tumors go, meningioma is a pretty darn good one as well.

WHO Grade 1 - yeah, I like that phrase as well.

All three were part of my pathology report. Woo hoo! Party all around!

And yeah, 90% of all meningiomas are WHO Grade 1, which by definition means benign, but there's still that 10%. And then they weren't 100% sure that it even was a meningioma - that has to be determined by testing and it's kinda hard to do a biopsy with a brain tumor. It certainly looked like the happy type of tumor - I mean, compare my last MRI with the example of a benign meningioma on Hopkins' website:

But getting the official report is even better!

excuse me, can I cough?

Those were my first words post-surgery. I was thinking that I'd cough one last time before they put in the breathing tube, but actually I was just coughing because they had just taken it out. I was so amazed that it was already over!

Thursday morning my mom and sister arrived at my house bright and early. I drove us to the hospital because I'm the most comfortable driving into the city and my sister would have plenty of time to practice afterwards. We checked in, paid my $250 co-payment and then went down to the surgery center. The same woman was at the counter and remembered us from the pre-op appointment the week before. She made sure that she had my mom's and sister's cell phones and then we just waited a few minutes until they were ready for us.

My mom went back with me - they said that Alison would be able to come back in a few minutes. I changed into a hospital gown and some grippy socks and then we just hung out and waited. I kept having to pee - I'm a bit of a nervous pee-er anyway, but it still seemed weird that I peed 3 times that hour we were waiting. Right around 8am, it got super busy in the holding area but they still didn't come for me. My surgeon came and marked up my head, the anesthesia team came and got me hooked up. Around 8:30am (I think), the drugs started to kick in and they wheeled me out. My mom and sister were dropped off at the first elevator, but by that time I was completely gone - hence the asking to cough.

During the surgery, they had me completely strapped down. My heels and elbows were jammed into blue cushy things, but the one for my left foot must have had a piece of metal sticking through because I had the WORST pain in my left heel for about two days afterwards. I also wish they had stuck a pillow under my legs because I woke up with my lower back practically spasming from the pain of being in the wrong position for 6 hours. Oh - and the metal clamp they used to keep my head in position scratched my forehead. So I woke up with boo-boos all over me.

I also woke up not being able to move my right side. My tumor was very close to my motor functions and sensory receptors. Apparently my doctor had said that there could be some problems with that, but I chose to not hear that. But luckily I was still under the effects of the drugs so it didn't really bother me. The pain in my lower back bothered me a lot more and I made my surgeon move my leg for me to relieve the pressure on my back. "Wait, before you go, can you prop my leg up?" He didn't really know how to take me. And then I insisted that he tell my family that everyone in post-surgery sounded like my mom and sister. I was afraid I'd forget about it otherwise and it was just really important for me to let them know that they were the first things my brain wanted to hear after I woke up. And when I was moved into the ICU room, the nurse in there coughed and it sounded just like my sister's cough. I was all amazed that she'd already be in there, but it was just the nurse.

It was weird that things like that made sense. Alison being in the ICU room first didn't seem like an impossibility, but it made a lot more sense that she wasn't there.  And I knew that it wasn't really my mom and sister who I heard in post-anesthesia, but I knew that it was significant.

I had been told that there was a good chance that I wouldn't remember that morning at all, but I woke up remembering that I had peed three times (this also felt significant, obvs) and with the same song running through my head.



My mom and sister came up to see me once I was settled in ICU. They had restuck things on me, maybe changed my gown?, gave me a cool washcloth to clean my face (BEST THING EVER) and the nurse even drew a picture of what my head looked like on the whiteboard across from me. I felt surprisingly lucid and normal when they came in to see me. I kept trying to adjust my hospital gown so it wouldn't be all hanging off me - I remember being traumatized when my dad's gown hung off him when he had his heart surgeries. But they said I was fine. And it was just awesome seeing them and talking to them and cracking jokes and just overall feeling normal.

I was so afraid of what I'd be like after surgery that I just never let myself really consider it. I didn't want to think of myself as not being able to think properly or not really be me anymore. That's what scared me the most. So that I was still able to joke with my family, that I still had music in my head - well, that made me happier than anything else in the world. I knew that if I was still me, I could handle the rest.

Debbie Update

Hi everyone, this is Debbie's sister Alison.  Just wanted to let you know that Debbie is out of surgery.  They were able to get 100% of the tumor and the doctor says that all went well!  He said he was able to get out all of the tumor, and burn off the little bit against the sagittal sinus.

Debbie arrived around 6am, was wheeled into the OR at 8:30.  They told us that they began the procedure at 10am, the microscope part of the surgery at 11am, and she was out just before 4pm.

When she was in Recovery, the doctor said Debbie asked him to tell our mom and me that, "The people down here sound like them."  He said she may not make sense at first but that will come back quickly.  He said she may have weakness on the right side but she should be back to normal in a couple of days.

She will be in ICU tonight and a day or so then they will see if Debbie needs any physical therapy to bring back the strength of her right side.

Debbie or I will be back here to provide an update once there's more information.

'twas the night before surgery...

Seems so weird that today I'm running around doing errands, having a new mattress delivered, helping my brother-in-law move his new mattress and tomorrow I'll be all post-surgery-y and unable to do any of this. Think it's more weird because I don't have any real problems from the tumor.

I am getting more freaked out as the day winds down, but part of that is because I know my brain will take a while to get back to normal. So is every T crossed and every I dotted? Will I be able to handle whatever is left with a possibly confused mind? But I've done as much as possible and I think the only thing left is to pack my bag for the hospital.

Oh - and finish making my bed. Clean sheets on a new mattress. Pretty good for the night before surgery, right?

more on my haircut

I took my sister and best friend with me to get my hair cut because I needed the moral support and my sister documented the process!

The Before shot. I pulled my hair all the way to the front so you can see just how long it really was - the longest layers were almost to the middle of my back.

My stylist, Kathleen, put my hair into two braids so there would be more usable hair for the donation.

 

Then it was time to cut it off!

I kept telling her to go shorter. I wanted it to be all about my bangs and not very much left in the back.

It turned out pretty cute!

Secretly, I ended up trimming it a bit at home - the sideburn thingys and I made my bangs a little more even instead of the asymmetrical thing Kathleen did (which was per one of my pictures, but I decided when I got home that I didn't like it after all).

I also got rid of my brassy, blonde-ish highlights to make it a little more edgy, a little less suburban (I may live in the suburbs, but I don't like to look that way)

And here's the final product! (picture taken two days later)

I do really like my new cut and am thinking about keeping it short for quite a while, though it is pretty hard to figure out what to wear to avoid the whole suburban look. But I'm getting used to it. It's good stuff.

I couldn't have done it without these women! So lucky to have them in my life. Mwah!

oh, YOU'RE the 33 year old with a brain tumor?

Yesterday was my pre-op appointment at Georgetown University Hospital. I have to say, they were all super nice. Genuinely super nice. Really makes me happy with my choice of hospital.

But I definitely got a few looks like "are you okay?" or "you're too young to have a brain tumor." And yes, yes I am. Thanks for noticing. But I still have one and I still need to have it removed. Let's keep the show on the road. The tech kept giving me very concerned looks until I smiled. Sorry lady, you're very sweet and doing a great job, but I'm still at pre-op for brain surgery, not a comedy show. I'm going to look concerned and worried because I am. And unless you're matter-of-fact about it all, I'm going to cry. I might cry anyway.

Because I'm actually pretty darn freaked out. The past few weeks have been great. I've been off in blissful denial land and loving it. I went to a bunch of concerts, I hung out with my friends, I bought stuff for my house but put off cleaning it and I also put off properly training my replacement at work. Why rush? I have lots of time!

Now I have just over a week. It's a little scary.


But my house is coming together. I moved all the stuff that doesn't belong in my spare room out and just need to organize what's left. Then I need to cart a bunch of stuff off to Salvation Army and put the rest in my attic (and my fabulous friend, Shelly, is coming over on Sunday to help with this - and go with me to get pedicures). Who knows if my bedroom will be clean, but that's not as big a deal. All I really need to do is change my sheets. My main priority is clearing off my guest bed since my mom will be staying with me. But I'm almost there.


And work is coming together as well. Right before I found out about the tumor, a girl (woman? she's just a few years younger than me so girl seems too juevenile but woman seems too old. young woman? that's goofy. anyway...) from our HR department expressed interest in joining my department. I thought it was a great idea, my boss thought it was a great idea and HR agreed to let her go. No idea why, though, because she rocks. She's organized and dedicated and a hard worker. She's cute and bubbly and we were already friendly so it was a natural fit to have her in my office. She also totally rolled with going from helping me to replacing me for 6 weeks. In a position and department that she didn't know the first thing about. And now that she's officially up here, we've been able to go over so much. It's a little hard for me because I'm not used to dictating everything I do and answering questions constantly during the day, but it's all very important so she gets it. And she is. So that's comforting.


But I've put off telling the last few people that I really should tell that I have a tumor. A few friends, a few work contacts. I just don't want to have the conversation AGAIN. It's tiring, it reminds me that I'm freaked out. It makes me wish I have sent those emails back in December when I was in denial-land (trying really hard to not pun about Egypt). Kind of making me wish I had gone for the December surgery date because then it'd already be over (but then I would have missed two really great concerts, Christmas and my niece's birthday and probably would be even more freaked out than I am now).


Bah. It's only another week and then it'll be over and I'll be in recovery. Two weeks from now I'll have been back home for a few days and this whole freaked out/rushed feeling will be gone. No matter what happens in the next phase, I just want it to start already.

new haircut!

So I did it. I cut my hair on Friday. And while I'm still getting used to it, I think it's pretty fun!

headache relief: concerts

Yup, that's right - concerts

So the massages have been GREAT at holding off my headaches, but it seems to wear off after a week and a half or so. Friday I woke up with a headache and had one off and on all day, but I also had tickets to see The Roots that night. Like I'm going to miss that. Heck no. So I pulled myself together and felt like I could just power through.

And for a while I was fine. But then my heels started killing my feet and I couldn't deal with pain in my feet AND my head. So I sat down - the show was at the Fillmore Silver Spring, which is all GA, but the balcony has concrete risers so I took advantage. They also have TV screens so even though I was sitting, I could still see the show. For a less-than-optimal situation, it was pretty good. And when the headaches would cycle back to the intense level, I could close my eyes and just focus on the music and ride out the pain. And it totally worked. If I had been in a perfectly quiet room, I would have just focused on the pain. The concert helped me just block all of that out, enjoy the show and move on with my life.

I like that. And thankfully, I have another massage scheduled for tomorrow!

Update: The New York Times just did an article about how listening to music can help with pain management and anxiety. Read it HERE.

Here's a clip from the show. And yeah, that's a sousaphone in the background, jumping around as much as the guitarists. It was pretty darn awesome.