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!
What do you want me to learn at the National Brain Tumor Society Summit?
If I am going to be surrounded by the best and brightest in the world of brain tumor research and advocacy, what do you hope I learn? What information do you want me to bring back to all of you so you can read about it here on the blog?
Lift with your head: the other 90% of my brain
I strongly believe in the power of advocacy as an important role in brain tumor survivorship. But advocacy only stimulates the 10% of my brain. There are many other parts of our brains--parts controlling crucial functions like heartbeats, muscles, balance, movement, the respiratory system, etc.--that require stimulation and use. That is the part of my brain I am just now starting to put to use and challenge for the sake of healing.
If I survive this brain surgery I am going to be a genius
“That which does not kill us makes us stronger.” – Frederich Nietzsche. It that’s true I am going to be a fucking genius.
My brain: 16 months after Temodar
Hallmark is seriously missing out on the "thank you for saving my life" card genre.
Getting back to exercise after brain cancer treatment
If life is short, and if my tumor grows back, it is worth having made myself as strong as possible before the fight. It is worth feeling good in my own skin, especially if I only have a short time in this skin.
Together we're giant: forgetting about brain cancer for a day
To me, 'without struggle there is no progress' totally applies to cancer. It captures us, and holds us hostage. And if we are lucky enough to be physically freed from cancer, and escape treatment intact, there are parts of us, at times, that are emotionally enslaved by cancer. I don't want to admit it--because it sounds embarrassingly weak--but I know I am, at times, enslaved.
Living is hard work
Was she right? Or was she wrong? Could someone so healthy have an opinion like that? Or was her positive attitude the right way to go?
Baseball: the ultimate cancer therapy
Whenever Tim Lincecum struck out a batter, Buster Posey hit a home run, or Pablo Sandoval wore his hat sideways during a rally, I felt like I was part of something greater than myself. I became one of hundreds of thousands of fans in orange and black who leave their hearts in San Francisco.