Friday, July 8, 2011

The Beginning of a Long Road

Let's get it started, hah!
Let's get it started in here
Let's get it started, hah!

Black Eyed Peas, Let’s Get It Started, Elephunk 2003

I've been kicking mass for about 4 years now as a brain tumor patient and activist for young adults. I found the mAss Kickers Foundation while searching for pages on Facebook about brain tumors, hoping to find a group of people who understood what it was like to be out of the pediatric phase of their lives but not yet into the adult classification of the medical world.

In September of 2007, my life transformed from that of a “normal” teen to that of what I like to call a “frequent flyer” for hospitals. I had been experiencing chest pain accompanied by tingling, numbness, and an electric shock in my head on and off for about a year; the symptoms gradually accumulated after starting off with originally just the chest pain and occurred once every few months, then once a month, and finally multiple times a week to the point where I was worried about when the next attack would strike each day. The chest pain began waking me up from deep sleeps, and the electric shocks would zap out of nowhere, leaving me tired and confused with occasional headaches.

I went to see a cardiologist first because the chest pain was the most frequent symptom and easiest to link to a field of medicine, cardiology. The doctor had me wear a heart monitor and prick my finger for a month to check for heart problems and diabetes, both of which came back negative. The next test he ordered would change my life and eventually lead me to discovering mAss kickers: an MRI to check on the neurological nature of the tingling and numbness symptoms.

Two hours after I had my first MRI I received a phone call explaining that I had a brain tumor in my left frontal lobe that was about the size of a thumb (from the tip to the 1st knuckle) made of galglioglioma/astrocytoma cells. While I was happy to have a diagnosis, my family was freaking out! It wasn’t until a week later that we found out the tumor was benign, and this past year the specific cell type after a checkup MRI showed the tumor to be slightly more prominent than the previous screening.

Doctors couldn’t definitively link the tumor to my symptoms, now known as focal point seizures, and the location of the tumor was too close to speech and sight headquarters in my brain to do surgery and guarantee the successful elimination of the symptoms. Naturally, most surgeons don’t jump at the chance to operate on a benign tumor unless there is a dire need to, but I’ve always believed that the tumor plays a role in whatever produces my symptoms. After seeing several neurologists whose migraine/seizure medications knocked me on my ass for months at a time without reducing my symptoms, I found one in 2009 who took a personal interest in my case and vowed that her medicine would make a difference. Two years and 1,000mg of Keppra a day later there has been a huge decrease in my symptoms and I have a seizure once a month if that.

The mAss Kickers Foundation turned my perspective on tumors/cancer from embarrassment to pride! I didn’t want to let people know why I was missing school or always tired because my medical life just wasn’t “normal,” but since discovering the MKF I shout my diagnosis from the rooftops to spread awareness about statistics and treatment options. I love wearing my bright yellow TUMORS SUCK! t-shirt on casual days at school and handing out stickers to spread the mAss kickers message and attitude about putting up a fight to kick mAss. My mAss hogged my free time for over a dozen MRI scans, EEGs, weeks, and weekends in half a dozen hospitals - it doesn't get to take up any more time (unless it's for a checkup appointment haha)!

Being involved with and advocating for the MKF for me entails meeting amazing people, learning about other fantastic foundations/organizations, staying up to date with research, promoting events, and encouraging my community to get involved with us tough cookies who make up the mAss Kickers Foundation. Supporters of the mAss Kickers Foundation are funny, artsy, athletic, and knowledgeable patients/friends/family members who aren’t afraid to say that TUMORS SUCK! join us in the fight against tumors/cancers with a spunky attitude and take charge against mASSes of all types and sizes! This blog is the start (get the “Let’s Get It Started” intro now?) of me getting more involved and connecting with the tumor/cancer community out there in the world. Here we goooooooo!

1 comment:

Are you Ready to be a mAss Kicker?

We think ALL Tumors Suck! We believe a stronger community needs to be formed to more efficiently fight these diseases. JOIN THE MASS KICKERS ARMY! Content here will be provided by real people who have been affected by tumors/cancer. Any one can be a "mAss Kicker". When facing a new intimidating diagnosis it is easy to loose confidence. We've found that the "Right ATTITUDE" will help get you through a difficult time! Are you ready to be a "mAss Kicker?"