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!
Would you take a short-term opportunity in an attempt to change the world?
What would you do, if you were offered a once-in-a-lifetime opportunity that, if accepted, would force you to leave the stability and comfort of an ‘everyday job’ BUT – might also give you the opportunity to change the world?
A thank you letter to Marc Maron
I observed how a man, nearing life's end, wanted to soak up every pleasure. He ordered a wine paring with every dish! He peer pressured me into eating an oyster! He ordered three desserts.
David, Part 2: The best thing I ever did in my life
A few hours after I learned David had started hospice I woke up in the middle of the night with an incredible urge: I had to see him. I didn't want to be a burden, and I felt like I was crazy, but I had to do it. Our last goodbye was not right at all, and I couldn't let our friendship exist on the one-dimensional plain of "we both have brain cancer." I wanted to know who he was as a person, outside of the disease.
Permission to live: Advocacy burnout
A few months ago I started to wonder if I should be doing all these things I am doing in the brain tumor community. Through this work I am fighting and fighting and fighting. I have been fighting since July 2008, and all of this fighting has taken a toll.
Talking about median survival time with friends
My friend's reaction reminded me that most people don't know the scope of my diagnosis. I think it is best to keep the details here, on this blog. It is a positive thing for people to be proud of their friend Liz, a "brain cancer survivor."
Chemo for the last time: I guess I have some survivorship to get used to?
The post chemo transition was kind of difficult for me, as I went from "doing something" to "waiting for the anvil to drop.”
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.