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 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.
Emails from dead friends
Sometimes I scroll past their numbers with my finger hovering just above the "call" button.
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.
My grandfather has a brain tumor too
I am afraid that seeing my grandfather on hospice, with a similar (if not the same) malady will only remind me of my own mortality. I am afraid I will find it too hard to absorb, and I am afraid that will come off as shallow and self-indulgent.