Friday, May 31, 2013

I'm Not A Survivor

Austin approached me last night and told me that he felt like I paint an overly rosy picture of my diagnosis.  "You make it sound like you have a sinus infection." he claimed.  "Don't make it the end of the world, but be honest about it."

Here's the thing.  I have some mixed feelings about that. Is an Ependymoma fantastic? No.  It's not.  If you get to pick your brain tumor, you should pick a benign meningioma right under your skull.  They pop them out like pimples, or leave them in depending on size.  They don't hurt anything, and frequently they only find them by accident.  Ependymomas are rare, and they're in a terrible location.  Most adults get them in their spine, which is a horrible place to need surgery.  I got mine around my brain stem, which is incredibly dangerous.  We didn't just leave our kids for 6 weeks to get radiation treatment because the Cancer Center is pretty, we left because it's an insanely complex region to treat and we needed good, experienced doctors.  Do you know what posterior fossa syndrome is? It's where your brain basically shuts off.  It happens in people who've had surgery or radiation to the back of their brain, where I did.  They don't know why it happens, it just does.

However, I have a very strange approach to this whole thing.  Half the reason I shaved my head before surgery was because I wasn't letting my brain tumor take anything away from me.  It couldn't take my hair because I gave it up.  I needed doctors who, even if they acknowledged it was the wrong choice, told me I had a choice, because my brain tumor wasn't allowed to force me into doing something I didn't want to do, like brain surgery.  I needed to pick it because I wanted to and I had choices.

I don't want to be my brain tumor.  I don't want people telling me I'm "amazing" or "strong", and I don't want to be a survivor.  Partially because this is something that happened and not my identity, and partially because it seems wrong and unfair.  Also, partially because nobody wants to do this, you just have to do it.  I don't feel amazing or strong, I don't feel like I'm "an inspiration", I just feel like I was sick and couldn't take care of my family the way I wanted, and that sucks.

Doing the Race for Hope almost gave me a panic attack because of that stupid yellow shirt.  I feel like what I've been through is not legitimate compared to others. This lady, Carol, she has an ependymoma and she has struggled to maintain the ability to walk, talk, and do other basic functions because of the damage to her brain.  Some people lose their children, their sweet precious babies to this thing.  Mark has had three surgeries, chemo and radiation to try to kill off his ependymoma.

It seems like I got it pretty easy with minimal side effects and a successful surgery.

Beyond that, as one person mentioned to me online, "Ependymomas barely count", not because the process isn't hard or scary, or because the location isn't ideal (it isn't) but because when you consider the fact that survival in adults is so high, and then you look at something like Glioblastoma Multiforme, which kills almost universally, it does seem kind of like I had a sinus infection.  A really really bad one, but still, it could be so much worse.

It's a really hard balance that I am trying to strike.  I don't want to be defined by this forever.  I don't want a vanity plate with a grey ribbon, I don't want to become a walking awareness PSA, I don't want to be told "You're just such a fighter" as if the people who don't make it to the other side of their brain tumor didn't try hard enough.  I want to help raise money for a cure, because I don't want anyone to ever have to do this, but I don't want to walk (and didn't) as a survivor because I feel like I'm somehow faking it because it could've been so much worse for me than it was.

So, in conclusion, I apologize if you felt slighted that you brought my family food and all I had was a sinus infection.  It is definitely more than that, but at the same time, I got it pretty easy when you consider how successful my surgery was, how long I made it on radiation with no symptoms, and the fact that they removed my entire tumor, I had it pretty easy.  Or, as easy as you can have it with 16 hours of surgery and 6 weeks of radiation.  I guess being thankful for that makes me tend to gloss over the severity of my situation, but I'd rather that than be a puddle on the floor.

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