
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!
Who am I without chemotherapy?
I can count on my hands the number of days it will be until I begin my last week of chemotherapy. I am overjoyed. And excited. And ready to be done. And I am completely terrified.
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.
Who is more likely to get the flu?
A married couple are exposed to the flu virus. Which one gets the flu?
“You know how to do this better than me by now”
I e-mailed my neuro-oncologist to remind him to check my lab work and refill Temodar, Emend and Kytril.
I honestly can’t remember how many months I’ve been on chemo
I am supposed to start another round of Temodar in about a week, but I can't remember how many months I’ve been on chemo.
Two years of platelet counts while on chemotherapy
I am grateful my body is receptive to this drug because I know it does not work for everyone the same way.
Four more months left of chemotherapy
What will it be like to take this drug for the last time? When it is all over?
When nausea comes from out of nowhere
I kept making the kind of noises a person makes when uncomfortable, miserable, or in pain. It was embarrassing.