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!
How I chose my new neuro-oncologist
The doctor’s job is to make sure I receive good care, not be my best friend.
Pushed out of the nest: Leaving Kaiser for a PPO
Changing health insurance can be scary, but especially for people with pre-existing conditions, and those who are medically complex and “expensive.”
Do I have neuropathy? Something is waking me up at night
Over the past two months I've been woken up in the middle of the night by a weird sensation. It feels like I bumped my elbow super hard, but instead of the sensation being in the elbow it is everywhere. And only on the right side. And this sensation makes it hard for me to stay still. I am jumping out of my skin.
My brain: 16 months after Temodar
Hallmark is seriously missing out on the "thank you for saving my life" card genre.
Surprisingly, no pre-scan jitters this time
Dr. L., asked if I would be OK having one of those super long MRIs... the kind that last for over an hour... Since I am a big fan of scans and medical procedures I said, "Hell yeah!" He already thinks I am crazy. Big long scan. New doctor to scrutinize my medical history. Should be interesting.
“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.
That feeling when your radiologist and oncologist disagree…
He seemed freaked out. I could tell by the look in his face. He felt compelled to hug me and let me know that "a lot of people are thinking about you, and care about you. Be strong."
