July 2008. I had just turned 29. My first symptom was a really big seizure. So, that’s how I found out, from a seizure.
So, where are you now?
I’m done with treatment. Where I’m at is there’s still cancerous tissue in there. I’ve had two surgeries to try to get rid of as much of it as possible right away, and then I was put on an oral chemotherapy pill. I have been off that pill for two years, and I get scans … every four months to watch the brain. It’s still there, it’s just kind of frozen, deer-in-the-headlights style. [When the] tumor is still there, as long as it doesn’t change, you’re good.
When did you start using your blog specifically for cancer updates?
Well, when you have a crazy disease, everyone wants to know what’s going on, and I let everyone know I had a brain tumor, and I was going to have brain surgery. I got my cellphone, which they shouldn’t have given me, and I created a text message, like, “I have a brain tumor. I’m going to have brain surgery in three days.” I copied everyone in my phone, and I sent it. I was out of it, so my boyfriend at the time started emailing everyone updates, and I thought, “You know, rather than emailing everyone updates, I should just open up the blog and let them follow along that way.”
What has the response been?
I’m getting about 12,000 to 13,000 unique visitors every year. It’s not just people with brain cancer. It’s their loved [ones]. It seems like your friend gets diagnosed, and you want to talk to them every day, but you know they’re busy, so you’re trying to find out what’s this like, and so you read this stuff, and [they realize], “Oh, so that’s what they’re going through.” It’s not exactly the same, but then, people feel like they can understand what their friend is going through.
How has social media helped you in your recovery in living with your disease?
The blog is a conduit for me to find other people like me. I am able to develop an online network of people who know what it’s like. We don’t all have the same type of tumor, we don’t all have the same symptoms, we might not all have the same treatment, but we all experience the same fear or guilt. So, there’s no way I can walk out on the street and meet that person, but through social media and this online world, I am able to make those connections.
What is the worst thing anyone has said to you about your diagnosis?
I was on the phone with my sister … about a month-and-a-half after the diagnosis, and she was just like, “I don’t know how to react. I’m really scared. It seems like everyone’s getting cancer. First it was you, now my dog has cancer.” I was like, “Can you really compare the two?” I don’t think she realized, but I was just like, wow.
Best thing anyone’s said?
Having a blog and writing about all my experiences, I get lots of feedback through the comments section, and then there’s Twitter and there’s Facebook. Even just the first time hearing that I wrote something and it’s exactly how someone else feels—one, I don’t feel alone, and two, [it feels] cool that someone else felt like I said what they feel.
You’re also an advocate for the National Brain Tumor Society.
I am an unpaid volunteer, but I am the lead advocate for the state of California—which is a huge state. I’m like, “Can there be more of us?” There’s just a couple of national brain-tumor organizations. [The National Brain Tumor Society] is the biggest one, and they deal mainly with advocacy.
Right now, I’m living, and I think a lot about [that] I have this disease, and I’m going to accomplish this. I would love to get out of that one day and live like a normal person and not think about accomplishments and checking things off related to my disease. I don’t know if I’ll be able to get there, but that would be cool.