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 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.
Tied for worst feelings ever
Tied for worst feelings ever: People assuming you beat cancer when you haven't, and reminding people you still have cancer and making them cry.
Nothing else will be scary again: my goal for 2015
And here I am, making a conscious decision to do something that takes eight months of commitment--eight months of training to do something intimidating, and awkward, and difficult. But I can’t say it is scary because I told myself six years ago that nothing would be scary ever again.