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!
When your first thought is, "Let's participate in research!"
Little did I know that my human genome is too large to send via email, but I was able to download it from my 23andMe account, upload it to Google Drive and share the link with the study.
So now my dad has brain cancer, too
it has taken me two full weeks to complete this blog post because I am (still) conflicted about how honest I should be about a man who was recently diagnosed with brain cancer. It is my longstanding policy to be honest in all things here, on my piece of the Internet, but I feel guilty outing a man for his crappy behavior when a terminal diagnosis is involved.
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!