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!
Preparing for the long haul: I am having brain surgery yet again and will soon be in full brain cancer mode
My tumor is growing and I likely have a more aggressive cancer now. Here's what’s happening, an overview of my medical next steps, and how I am feeling in this moment.
There are no rules for recovering from neurosurgery
There is no rulebook for some of the things I have had to recently learn. New exercises were invented. I designed a strategy to learn to drive a car again, which involves Gran Turismo 7 for the PlayStation.
Massive growth, but not the kind you think it is
What is harder: starting something new, or returning to something you used to do after an absence?
Having an “insult” to the brain is not a reflection on me, the relationships I’ve developed over my entire life, or my approach to doing the hard work.
So, I accidentally attended a national meeting 14 days post brain surgery
It was nobody’s fault. if anything, it was a perfect storm. I was excited to listen to the patient perspectives on research section of today’s meeting, convened by the NCI Patient Engagement in Cancer Genome Sequencing Network. I was supposed to be in “listen only” mode, and no one was expecting me to comment since I just had brain surgery 14 days ago. But the moderator asked me for my thoughts on a topic; I paused and didn’t know what to do. No one said anything, then the moderator again asked what I thought. Well, ugh, I thought, so I unmuted and turned my camera on to attempt to answer the question.
Hello from the other side of brain surgery
Hello everyone! It's me, Liz! I'm officially back from the other side of surgery, although my language and math skills are still very much on the mend. I hope you can bear with me as I relay this very personal update.
Deep undercover: observing “patienthood” from a research perspective
Literally everything I have learned over the last 7 years of working in healthcare applies to my current situation. I can’t help but both be in my body as “the patient” but also observing outside of myself, giggling a little and learning a lot.
The other shoe has dropped: I am having brain surgery again
Plans are in the works for me to have my third brain surgery sometime soon, likely in the next few weeks. Definitely in October 2021. It has been 12 years since my last.
How I wrote This: What I learned while writing my first paper for an academic publication
In medicine there is a saying: See one, do one, teach one. This paper was a do one experience.
Nobody knows you’re a patient: Getting used to identifying as a researcher
This sense of being an outsider is due in part to imposter syndrome, and in part due to not having many people who look like me in research. And by “look like me,” I mean people who successfully entered the realm of research through a nontraditional path… as a patient first.