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!
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.
David, Part 1: When your brain tumor friend starts hospice
That was the weirdest fucking goodbye of my entire life.
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.
Everything you thought you knew about your brain cancer diagnosis is going to change
If I was a patient getting diagnosed today I would make sure I was being treated at a medical facility that could sequence the genome of my tumor in order to find out what type of treatment I should be receiving. If my local hospital could not perform this type of high-level activity, I would seek a second opinion just for the sake of knowing what I truly have in my head. From there I could go back to my local hospital with that data and use it to receive the right care.
The future is a horribly scary, uncertain place
In the middle of the sidewalk, on a sunny Memorial Day, I was sobbing because my husband has to think about stupid ass shit like not being able to afford a potential home because his 35 year-old wife might die in some unforeseen future from brain cancer.
Paddling beyond my diagnosis: First Descents
In my last post I wondered what I was training for, and now I have a fun new purpose. I am training to go kayaking and camping!
Expressing survivorship as an athlete
This experience, where I learned to love something I never knew I would be interested in and be good at it, has made me realize that there are millions of things in the world that I have never thought about… and I might love and be good at. I am so lucky to be alive and have the time and curiosity to search for these things and find my purpose in this world.
