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!
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.
This is what cute looks like: engaged with brain cancer
There will be MRIs. There will be more decisions about continued treatment. There will be times I forget. There will be times when I worry.
Trying Depakote
All of this is great if the tremors go away, but I have been on the new drug for a week and I still have tremors--and they are weird. It almost feels like I've had way too much caffeine and I am shaking with excitement, but I am not excited, nor do I have extra energy.
Mark Miller
There's this guy I met at the UC Davis brain tumor support group, Mark Miller. He was there to make a presentation on managing health with technology – and Mark had brain cancer too.
Taking a break from temozolomide
I am fortunate to be in a position to take a break. I don't remember what a normal body feels like. I know everyone is tired after a day of work, but it is serious work to stay motivated to go on a walk. (Brett keeps me motivated.)
MRI looming and I’m just happy to be alive
At work today I ran into a woman I rarely see around the building. She said, "How are you liking it here?" And I said, "It's great!" And she said, "Well, you sound happy!" And out of nowhere I blurted, "I'm just happy to be alive!"
