songs of gratitude

It's very easy for me to feel sorry for myself. I mean, I DO have a brain tumor and I'm having my brain cut open next month. But when I listen to these songs, it's also very easy to instead be thankful and to appreciate my good luck. I know that I'm a very lucky girl and I'm grateful for all that I have. I'm grateful to have my family and all of my friends. I'm completely surrounded by love. I'm grateful to work for a compassionate company with awesome co-workers, a great boss and terrific benefits. I'm grateful the tumor was found while it's still relatively small. I'm grateful I live in a major metropolitan area with dozens of hospitals from which to choose.
It also doesn't hurt that My Morning Jacket and Pearl Jam are two of my very favorite bands. Or that Ray Conniff reminds me of Christmas growing up where we'd play that record on repeat. So yeah, I'm also pretty grateful that these bands and these songs exist. They're really awesome so I'm sharing with you.

And like the song says, "if you're worried and you can't sleep, just count your blessings instead of sheep. And you'll fall asleep counting your blessings." It really does work.

Pearl Jam "Just Breathe"
 

My Morning Jacket "Thank You, Too"


Ray Conniff and the Ray Conniff Singers "Medley: Let It Snow/Count Your Blessings/We Wish You A Merry Christmas"
 
(this is here for the "Count Your Blessings" part. It was originally sung by Bing Crosby in White Christmas, but I'm more attached to this version)

Do you have any others I can add to my list?

headache relief: dancing

Last night was my office holiday party and I danced for a few hours straight. And it was SO much fun.

I had been feeling a little headachey so I thought I'd show up at the bar a little late, have dinner, dance for a bit and then head home early. But as soon as I got on the dance floor, thoughts of going home quickly left my head. My co-workers are awesome and everyone was dancing with everyone else so when the little group I was grooving with took a break, I could easily find another one. Or just dance by myself. It was all good. And it's always so good to know that I have the energy to just keep going. I feel like endurance will be a good thing to have for surgery & recovery.

Eventually, though, I hit a wall and had to stop. I had been dancing for two hours? And hour and a half? I didn't check the time when I started, but I stopped a little after 10. I stayed for a few minutes more talking to folks, but decided to go home while I was still having fun.

And my headaches completely disappeared after I started dancing & have yet to return. I call that a successful way to treat headaches.

my recovery color

I bought some new pajamas once my surgery was scheduled - red floral ones. I love them. And they'll be great for in the hospital and right afterwards because I can button them up instead of trying to navigate collars & staples.

And it got me thinking - I should have a recovery color. Like a talisman. And red's a pretty good color for that.

It's bright and cheerful, it has energy and movement. It'll get my head moving to stitch itself back together. It's vibrant. It adds color to your face when you don't have any of your own. Red flannel pajamas are somehow warmer than blue ones. And I feel powerful when I wear red. Like I can do anything, such as recover from brain surgery.

Coincidentally, Pantone picked a red-orange at their color for 2012. Tangerine Tango.

From the press release:

“Sophisticated but at the same time dramatic and seductive, Tangerine Tango is an orange with a lot of depth to it,” said Leatrice Eiseman, executive director of the Pantone Color Institute®. “Reminiscent of the radiant shadings of a sunset, Tangerine Tango marries the vivaciousness and adrenaline rush of red with the friendliness and warmth of yellow, to form a high-visibility, magnetic hue that emanates heat and energy.”

Friendly vivaciousness that emanates heat and energy? I like it! Plus they're teaming up with Sephora for a Color of the Year product line. I'll definitely scoop up some Tangerine Tango nailpolish and maybe even some lipstick. Nothing makes you feel stronger than some red lipstick, after all.

my idea of fun

Having a brain tumor makes you do crazy things.

Like print out your 70 page medical benefit booklet to read over dinner.

Not because I doubt my HR department, but because I NEED TO KNOW FOR MYSELF. I'll believe whatever you have to say, but I'll also then go and double-check it wherever possible. Online, in a book, by another person.

Or by reading through a big, honking piece of legalese. So big that I needed to use a binder clip. And not even the small one.

That's my idea of fun.

tumors coming out of the woodwork!

Before I started telling people about my tumor, I didn't think I knew anyone else who had one. At least not a benign one - and then if it's cancer, you tend to focus on that and not the actual lump. But now? Tumors everywhere!

Craziest to me are my two coworkers who are both my age. Well, one is a former coworker, but she was here for so long and only recently left so it's easy to forget that she's former. She had a brain tumor, an acoustic neuroma, and was treated with Gamma Knife. The still-current coworker had a tumor on the base of his spine. He had a successful surgery on Monday and is expected to be back to work in early January.

And then there are the stories - the relatives, friends, neighbors of people I know. Seems like just about everyone is separated from a brain tumor by a few degrees. Luckily, everyone I've heard about has had a full recovery and I plan to add one more successful story to the pile.

But then, what does "full recovery" really mean? They're able to go back to work, live their lives, have children, be normal around others, but what about the more subtle issues? Exhaustion, sensory overload, etc. The kinds of things that you can completely deal with but that decrease your quality of living. The kinds of things you might not tell your cousin or neighbor or casual friend.

I'm setting up a Skype call with my former coworker - she's now living in London so we have a 5 hour time difference. She didn't have her skull opened up, but she'll still have dealt with the issues of an altered brain. And she was always great to work with and on the ball, which is very reassuring. I actually didn't even know that she had anything done! And then I know that she'll tell me exactly what it was like and not sugar-coat anything. One more step towards being fully prepared for my surgery.


Side note: the link I used above is for the overall small world concept. For Six Degrees of Kevin Bacon, I recommend the Oracle of Bacon. It's awesome and pretty addictive.

headache relief: massages

Sunday I went for massages with my sister. I had a gift card for Jolie Spa in Bethesda and it was big enough that we could both get 80 minute massages and only pay $20-30 out of pocket. Pretty sweet, right?

And it was a really, really good massage. I had a male masseuse who radiated good energy and had massive hands. The 80 minutes stretched on forever - not in a bad way, but that I felt he was spending so much time on each part of me that I couldn't believe he still had time to work on the rest. And by the end, I felt like every part of me was thoroughly massaged and relaxed.

I decided to not tell him about the tumor or about the weird head tickle/headaches I've been having for the past week and just see how things go. I didn't know what he'd be like, if he'd end up doing something weird to my head or whatevs. I just wanted a nice, normal massage and that's what I got.

And you know what? My head is SO much better. The weird tickle is gone and my headaches have been very minimal the past two days. I just feel normal - and it's such a nice feeling.

I also haven't felt the need to cover my head at night, but that may be more due to the warmer weather than the massage as it's been in the 60's the past few days.

I still have some money left on the gift card. There was a scheduling snafu and my sister's masseuse wasn't able to come in. She got a facial instead (which she loved) and the spa comped us for it. So yeah, I'll definitely be going back before I have my surgery.

unhappy head

My head has been UNHAPPY for the past week. Un-un-un-unhappy.

Guess it started on Thanksgiving? I got all stressed out about what to wear, same as I do for every holiday. Pictures! People! Overheated kitchen! Not good.

Then the day itself was pretty relaxed, but the headache came before dinner. Karl (my brother-in-law) actually noticed it on my face. He stopped me and said "You look like you have a headache right in the middle of your forehead." And yes, yes I did.

Overeating at dinner didn't help. Not drinking enough water didn't help.

Then Friday, MRI day. I was stressed getting there because there were 50 million thousand tourists out. Holiday + gorgeous weather = cranky-ass Debbie. And then the contrast agent fucked me up. I wasn't actually dizzy, but I felt really odd. Like I shouldn't drive. So I didn't. And then my left arm felt off as well. I didn't feel the contrast going in, but I definitely could tell that it was in there. But it was all so subtle, it almost felt like I was making it all up. Or that it was all in my head. Hahahahahahahahaha

So those were the big factors. Life otherwise has been pretty normal. Visited a friend and her new baby, Starbucks with the neighbors, seeing a friend's play. Maybe more activity than on a normal weekend, but nothing overly strenuous or stressful. Work has been meh, but that's more due to my unhappy head and not external stressors.

But my head's still unhappy. Headaches, sometimes pretty intense, never in the same place twice. And then my head just feels weird. Like there's pressure on the outside of it, but what makes it feel better is when pressure is applied. If this feeling were in my throat, I'd cough.

Yes - that's it. It's like a really annoying throat tickle. Except on my head. I have a head tickle.

And then it's winter & cold, especially at night, and that seems to exacerbate the head tickle. So I've been sleeping with the covers up over my head - pretty standard issue for winter in my drafty, drafty house, but it just doesn't seem cold enough for that yet. Yes, it's cold. But it's not frigid. Covers-over-the-head is usually reserved for frigid temps. Even odder is that it doesn't bother me for the covers to be on my face, usually a big no-no. It's like my body wants to hibernate early.

Last night the head tickle started early so when I got home, I immediately put a bandana on my head. I really wanted this soft, pretty, light blue cashmere winter hat that I got years ago, but I think it's up in the attic. I was not in the mood to climb up into my possibly stink bug-infested attic at night. Nope, not happening. So bandana. My gray one because it's nice and big and the color is comforting. And didn't clash with my red pajamas. And it worked pretty well. I slid it down over my forehead and ears and the tickle subsided. My head was actually halfway happy. At least for 3/4 of the evening - the last 1/4 I was really wanting that cashmere beanie. At bedtime, I kept the bandana on and added the blankets and slept very well.

But my head's tickling again today. And I have a concert to go to and fun to have, not to mention my normal workload. I got things to do, man! I don't have time for a head tickle. It's totally making me grumpy, making me distracted, making me blog about being grumpy and distracted, which means my work is piling up even more, which makes me even more grumpy.

Bah.

I think it might be due to my menstrual cycle. I'm pretty sure I'm ovulating right now, which could be the cause of the headaches, the head tickle and the distraction. How can I work when my body is telling me to procreate? I mean, really! Biology always takes precedence in my body. No wonder I have a freaking meningioma.

MRI process & pictures

I have now had two MRIs - the initial one at Greenbelt 3T MRI Center and then last week I had one at Georgetown.

The actual MRI process doesn't bother me at all.  They lie you down on a bench, put a foam wedge under your knees so it's comfortable lying on your back, cover you with a blanket, give you earplugs, put foam pieces next to your head so you're less likely to move and then stick this cage thing over your head to get front images.

BTW this is not me

You also get a squeeze-thingy so if you start to freak out, they can stop the machine right away. Then they slide you in and the weird, loud, jack-hammer noises start, but they're rhythmic and done in a series. So you have a series of crazy noises going for a few minutes, then silence, then a new set of crazy noises. And it's all muffled because of the earplugs. After 30 minutes or so, if you're getting the contrast, they slide you back out and inject it. The first time it was just with a needle, this second time they had put in an IV lock beforehand. Then they slide you back in immediately for 15ish minutes more.

Supposedly you can sometimes get headphones to listen to music (local radio stations most likely), but that wasn't an option for me because of the types of images they were getting. But that was fine with me. I'm not clausterphobic, I keep my eyes closed and let myself drift into a meditative state. Not quite asleep, not quite awake and tucked into this little cocoon. Have you ever been tanning? It's like that, except not warm. Letting myself drift like this also helped make the crazy noises not be so annoying, they actually helped me drift a little further.

So the during is fine (as much as it can be), it's the after that gets me. Both times they did a contrast, which is where they inject Gadolinium, a liquid rare-earth metal, into you which helps illuminate the veins in your head and is especially good for checking out tumors. Pretty cool and pretty useful, but man, it makes me feel weird. The first time, I shook it off pretty quickly. Stopped off at Starbucks, drank my coffee in the car, bam, fine. A little bruising at the injection site even though the needle went in easily, but overall not bad. This last time, notsomuch. My mom and sister went with me so Alison drove us to Cafe Deluxe for an early dinner. Yummy food and lots & lots & lots of water helped, but I was still happy to let Alison drive the rest of the way home. Nothing specific, I just felt off. And my left arm (the one they used to insert the metal) definitely felt different from my right for the rest of the day. But then I was also feeling off on Thanksgiving and my headaches had come back so I think my greater reaction to the contrast was because I was already off-kilter. And after a good night's sleep, I woke up feeling myself again.

Apparently these are all fairly common reactions - dizziness, the injection arm feeling odd or even sore, bruises at injection site, headaches. Usually it's all fairly mild and goes away within a few hours, like mine did. Overall it's a pretty non-scary procedure.

On to the pictures. I'm showing the side view and the front view. This first set is from my MRI on October 27th.

And this second set is from the one last week, November 25th.

Since this one was done at Georgetown, where my doctor is, I had to specifically ask for a CD of the images. I had also downloaded software that allowed me to see the images - without it, they end up being teeny tiny little things, but with it they become normal sized and easily viewable and you can even export mpegs.

I haven't heard from my doctor yet, but as far as I can tell, they're identical. Secretly, I was hoping that the first MRI was faulty and that the tumor would either have disappeared (maybe they switched my files! even though I was the only person there that morning and they gave me the CD immediately!) or was really smaller than what was originally shown. But hey, next best thing is that it hasn't grown.

And you wanna see why contrast is good? Here's my first MRI, pre-contrast:

And here's the same angle, post-contrast (same picture as above):

Pretty cool, huh? Makes all the minor side effects worth it.

I also like that I can export the files as quicktimes. Here's one from October that shows the tumor from the top - or actually, the bottom. In the video, the tumor will appear in the bottom right, but it's on the left side of my head (note: you will see my eyeballs. It's only for a fraction of a second, but can be a little freaky the first time you see it)

And that's what's going on inside my head!

me & my meningioma

After my initial MRI, the radiologist said that I have a 2.2 x 1.8 x 1.9 cm high left parietal parasagittal meningioma. My neurosurgeon confirmed this, but ordered a second MRI, which happened last Friday. More on that later.

A meningioma is a tumor that originates in the meninges, the membranes that surround your brain and spine. My meningioma is on my brain and basically right on top of my head. It's right next to - and starting to invade - my superior sagittal sinus - the large blood vessel going through the middle of your brain - which is where the name "parasagittal" comes from.  This location accounts for about 25% of meningiomas, making it the most common. But it also makes it one of the trickier to remove as they have to be careful not to damage the sinus. Because of this, they may have to leave a teeny tiny bit in, but then I'd have radiation to neutralize the sucker.

Surgery is most often the solution, as it is for me. Radiosurgery (concentrated radiation therapy) can also be an option, either in addition to surgery if they can't get it all out or if it ends up being more atypical, or as a primary step if the tumor is small or if it's burrowed too deep into your brain. My tumor is just a bit too big for radiosurgery only (it's about the size of my first thumb joint) and it's sitting nicely on the top of my brain so no problem getting at it. It's also too close to a blood source to be safe on its own. Plus I'm young so there's lots of time for it to grow, better to get it out now while it's still easy.

No one is really sure what causes them. Women get them twice as often as men so possibly estrogen. Radiation is also thought to be a cause, but I've never had radiation. They are the most prevalent type of brain tumor and are also often the easiest to treat. So if you're going to have a brain tumor, this is the one you want. Yay me.

Apparently I'll have my staples removed 1-2 weeks after surgery and will be cleared to drive at that point. I'll also be on anti-seizure medicine for about a week. Most patients then take another few weeks off from work to full recover. Luckily I have a job that will allow me to do this and to start back part-time until I'm really ready to be back full-time. Also lucky that I have short-term disability at my job and have been here long enough to get 13 weeks at 100% pay. Really lucky about that.

Not really sure what to expect with my recovery. Before I stopped reading stuff online, I mostly found stories of people who had large tumors, baseball or grapefruit size. And that often were causing seizures or vision or motor problems. Or that were tiny and thus were on the watch-and-see method. I'm completely asymptomatic (the headaches have pretty much gone away on their own) and my tumor is small, but not tiny. My theory is that others who had tumors similar to mine recovered fully and with minimal complications and thus haven't had to go online for answers. Good theory, right? It's also why I'm writing this blog - so others like me can have a resource.

So I'm expecting a few weeks of not functioning at normal capacity. Forgetting things. Not remembering the right words or what they mean. But then I expect that to wear off and for my brain to go back to normal.  I don't expect to have any long-term problems.

I also expect to be extremely fatigued at first and to not have a high attention span. I'm stocking up on sweatpants and flannel pajamas, cleaning and organizing my house top to bottom, ordering cable and upgrading my internet connection. I plan on taking things extra easy for a while so I don't end up with a setback. Just keep on moving forward.

pre-surgery hair

I measured my hair last night - the longest layers are about 11' when in a low ponytail. Which means it's long enough to donate! Woo hoo!

I did some research today and have decided to go with Locks of Love. Some people have complained that they give their wigs mostly to kids with alopecia, not cancer. That they sell the hair that's too short for their types of wigs or that's gray. That they throw out hair that's unusable.

But you know what? Those are EXACTLY the reasons I've chosen this charity. Of course I'm freaked out over having half of my head shaved, but I can deal with it because it will grow back. A kid with cancer's hair will also grow back. A kid with alopecia? A kid who suffered horrible burns? They're not so lucky. They're the ones who really need these fancy wigs that they can swim in.

Yup - swim in. How cool is that?

And charities need cash. Not-for-profit doesn't mean no overhead expenses. And no charity is perfect. I've heard all sorts of horrible things about Susan B. Komen's excessively high overhead expenses, yet no one writes into forums about how one shouldn't donate to them or buy all of those ugly breast-cancer-pink things. So maybe Locks of Love could budget a little better. That doesn't mean they aren't doing good work.

So that they sell the hair that's gray or too short is fine by me. That money will then go towards overhead costs or to offsetting the cost of wigs for the poorer families or however it is that they choose to spend the money.

Plus, they'll take dyed hair. Can't undo that and it seems like such a waste to just throw this hair in the trash.

Bottom line, I don't care if my hair is sold instead of put into an actual kid's wig. Either way I know that it will go towards a wig in one way or another.

Anyway, back to me. I first thought that I'd shave it all off before the surgery. Then I thought maybe pixie. Then I thought maybe I'll just let them shave it and figure it out afterwards. But now that I know that I can donate, I'm back to cutting it short prior to surgery (though still waiting until January).

And then I found A Lie of the Mind via The Hairpin and saw her post about Kate Winslet's short hair in British Vogue. So I did some googling. Her hair in the magazine was platinum and tough-sexy.

I tend to fail on the tough-sexy front, but I found some other pictures that were very relatable.

See? Right? Prettiness. And seems realistic considering my hair type and what my hair tends to do on its own. But I'm not fully feeling the blank forehead thing. And is it pretty just because Kate's pretty? Plus it all seems a little, I don't know, 90's? And then I saw this next shot of Emily Browning.

Okay, now we're really getting somewhere! I don't even know who she is or when this picture was taken, but I feel like this hairstyle would totally work.

A. It's non-existant in the back so I can donate as much hair as possible
B. Girlfriend has hair that seems to be roughly the same texture as mine
C. This is the way I picture my hair color in my head (though I know it's - and like it - darker in real life). Combine B & C and I can actually see myself in this cut. Well, see myself looking stylish. I can see myself looking unstylish in Kate's cut.
D. I can picture me styling my hair so that it looks like this. I even have a 3/4 full container of Jonathan Dirt.
E. It's cute and a bit edgy but not so rock-and-roll that I'll feel like a poseur. I mean, sure, I go to gobs of concerts, I like my guitars loud, I'm quite hard core on the inside. But I'm more preppy on the outside. A friend called me a gregarious introvert and I feel like the term suits me nicely. It's my thing. And I like me. I see no reason to change just because my hair won't be 10-11" long anymore.

Keira Knightly also had a pixie with long bangs.

And Kate Moss, who can do no wrong, had even more of a traditional pixie, I would be open to this as well, though I'm so not gamine.

Of course, the most important thing is that I don't end up looking like Carol Brady

That, my friend, would definitely not be a good thing.

two months until surgery

I had suddenly started having these ridiculously horrible headaches the same week I started researching internists in Greenbelt. I don't remember the exact days, but it was like Tuesday I started the research and Wednesday my skull felt like it was about to crack in two whenever I stood up or coughed. So I made an appointment for that Monday with my internist. Since I'm not prone to headaches, she ordered an MRI. She brought me into her office to discuss it and told me that I have a meningioma - an almost-always benign brain tumor.

Total, complete craziness. Seriously? A brain tumor?

After research and consultation and all that good stuff, I scheduled my surgery for January 19th at Georgetown University Hospital. Two months from now.

And I have to say, my anxiety levels went down immediately after getting off the phone with the surgery scheduler. It's hard to concentrate on anything else when there's this major surgery looming over you, yet you don't know when it will happen. Now I know. I have two months to prepare, to get everything in order with work, to get everything in order at home, to come to terms with having half my head shaved and to find a good solution for covering it while it grows back. I've started telling people at work, I've started spreading the news to my friends and extended family and I've started this blog.

But you know what's almost crazier than having a brain tumor? My neurosurgeon doesn't feel that the headaches were caused by the tumor - and they actually have gotten a lot better on their own. My sister's theory is that they were my body's way of getting me into that MRI machine since meningiomas are very often asymptomatic. And since they're very slow-growing, who knows how long I've had this sucker in my head. Probably not an excessive amount of time, but still. So random. Never thought I'd feel so lucky to have head-splitting headaches.