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!
I am the population now: The tale of a brain cancer “n of 1”
There exists no population-level evidence that taking the drug for that length of time is beneficial to the overall survival of people living with my disease.
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.
Lobbying with my emotions: brain tumor advocacy is conjuring up all kinds of dirt
I have no idea if my father is 'proud' of me, but in my mind he has no right to be proud. Because nothing of who I am reflects on him, his skills as a parent or of who he is as a person. Pride is feeling good about something you did. He never did anything, and he certainly never reached out during my entire cancer process. I never got flowers. I never got a card. He didn't come to my wedding.
Brain tumor advocacy in full swing: it's time to educate Congress
There are people who are mortgaging their homes just to get their kids the Temodar they need. Some people are skipping their treatment and using it only every other month.So you can imagine what a blessing it would be to brain cancer patients everywhere if our chemotherapy was treated the same way as chemo for every other cancer patient. For reasons unknown to me, we are being discriminated against, and this is not OK.
MRI one-year post Temodar chemotherapy
Since I am psychic, and have answered a million questions about brain scans, I am going to answer all the questions I know you have.
To have a slow-growing brain tumor
"But really, aren't there cases when grade twos just stay a grade two forever?" I implied that with my youth, health and intelligence, someone as awesome as I must be spared from this injustice.
What is making me dizzy? The inner ear or the parietal lobe
After my alarm went off I got in the shower, dizzy still. I held myself up with the walls. I leaned on the counter as I brushed my teeth. I wrapped myself in a towel and watched Brett do his morning push-ups.
I'm here. I have cancer. Get used to it.
It has been freeing to let loose a big secret that has defined my life over the past 2+ years. It is like I've come out of the cancer closet.