Patient & Researcher Blog
Here I aim to capture what I am learning as a newbie researcher from a patient perspective.
Living with a slow growing brain cancer
It is taboo for researchers to talk about their work before it is published.
I think that’s a bummer.
My favorite part about research is learning new things in real time. Here I share my observations as a learner and my n of 1 (personal) findings as a patient.
Note: I started blogging about brain cancer in 2008, at age 29.
I had no background or knowledge about healthcare when I began. Please excuse typos and other misconceptions. What you read here is me in real time, like a time capsule.
There are more than 500 posts here. Use this search to look for something specific. Good luck!
Dreaming about my friend’s brain surgery
My friend Erin is having her second brain surgery on Wednesday and last night I had this dream.
Why do we have brain cancer?
The causes of brain cancer are unknown. However, certain factors increase a person's risk of developing it. Compare your answers with mine. Maybe we'll find a common link.
Can you be OK with the unknown when you will have cancer for the rest of your life?
People talk about how tired they are and I want to smack them upside the head and say, "You think you're tired?" But I restrain myself. And I'm cool with that.
Parietal lobe damage: One side feels different from the other
I hate that with every odd thing that happens I immediately trace it back to being an issue with my brain tumor.
Will this EEG determine once and for all if I have having increased seizure activity?
As long as knives aren't involved, I think it is cool to learn as much as possible about my brain. I've had pictures (CT scans and MRIs), and surgeries (tissue samples), but now I get a graph!
Gliogene: Studying people who have two or more family members with glioma brain tumors
If you and another person in your family have been diagnosed with a malignant brain tumor (e.g. glioblastoma, astrocytoma), you might be eligible for the Gliogene study.
What is family?
Upon hearing the news and finding out that I had a "mass" in my brain, my best friend called her dad. He was in town the next day--asking the important medical questions, demanding answers, advocating on my behalf (because I was too out of it to know what was going on).
MRI looming and I’m just happy to be alive
At work today I ran into a woman I rarely see around the building. She said, "How are you liking it here?" And I said, "It's great!" And she said, "Well, you sound happy!" And out of nowhere I blurted, "I'm just happy to be alive!"
