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.