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Telling your story


"I have a brain tumor. I'm having surgery next week. Isn't this crazy?"

A brain cancer diagnosis is a life-changing experience. Some choose to deal with it by sharing details only with their immediate family. Others choose to share their experience with their closest friends. I took a different route. After experiencing my first seizure, I was taken to the hospital where I learned I'd be having brain surgery in three days. Rather than freak out and cry, the first thing I did was send a text message to my 50 "closest" friends.After sending this mass electronic announcement, I soon realized I put myself in a situation where everyone needed to know my status at all times. Word about my condition spread like wildfire.Did I owe my friends frequent status updates? No. Did I want to share my crazy experience with all my friends? Oddly, yes. To keep the information flowing and make communication easier, I started a public blog where my friends could follow my medical journey.After a while, I wasn't just blogging for my friends; I was blogging for my own personal gratification. It certainly was satisfying looking back at the end of my first year with cancer and reading old posts from my first and second brain surgeries. I re-learned how to walk and maintain balance? My, how far I'd come!It wasn't until a year and half after I started blogging that I realized I wasn't just writing for me and my friends anymore. Due to the wonders of the Internet, my blog was now reaching other people--people I didn't even know, people from across the country and around the world. At first I thought I was cool. Wow, I must be a great writer!But then I realized how rare it is for someone with brain cancer to be doing well, going back to "normal" life and moving on--especially during treatment. People affected by brain cancer--patients, friends, caregivers--are looking for stories from those who make it out alive. Sure, they get opinions and direction from the medical community, but the only people who can provide a glimpse into what life is like are warriors battling it out on the front lines. The sad reality is that it is rare for people with brain cancer to connect and find others like them. I live in Sacramento, the state capitol of California, and the number of breast cancer support groups out number brain tumor groups 25 to 1. Notice I wrote "brain tumor" groups. Those with benign and malignant tumors are grouped together because there aren't enough of us to be separated into different groups.So what do we do about this lack of support?If only one out of three adults diagnosed with a malignant brain tumor today will be alive in five years, then the opportunity for survivors to share their stories and help others is low.*Whether we are survivors or are still undergoing treatment, it is our responsibility to tell our stories and let other know we are still alive."As for my blog, I'm now writing for the person freaking out because they got diagnosed today. I'm writing for the guy who is about to go into brain surgery tomorrow morning.I'm writing for the mother of two, who's on Temodar and Avastin, and can no longer breastfeed her three-month old.I'm blogging for people just finishing treatment, going back to a "normal" life, still freaking out the day before their next MRI scan. I'm blogging for those who take comfort in knowing that there is someone else out there who knows how they feel. Liz Salmi is a brain cancer blogger, neuro-geek, healthcare sympathizer, design ninja and all around badass. You can read her blog, "The Liz Army" at thelizarmy.com.

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