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!
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.
Is anyone listening?
Sometimes I feel like I am shouting into the wind and no one is listening.
That one time I put my blood in my refrigerator so I could participate in research
I am so used to this life it does not freak me out anymore.
I might have nystagmus
The worst case scenario you could have in this situation is a brain tumor.
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.
Spiraling: We could all get hit by a bus and die
You will wonder if the reason your tongue is sore is because you suddenly developed an allergic reaction to the chemo pill you've been taking for 20 months.
Living with cancer is different from living after cancer
It's amazing when someone puts into words exactly how you feel.
NY Times: When patients make jokes
It’s the rare patient who copes with the stress of cancer by being a comedian, but a few people do. I have always found these patients not only funny, but fascinating.