Bringing Punk Rock to Health Care
Hi, I’m Liz.
I’m a former punk rock drummer-turned-cancer patient, and now research dissemination strategist and community organizer at an academic medical center.
What does awake brain surgery feel like?
“During an awake craniotomy for resecting part of her astrocytoma, a patient-investigator faces a high-stakes decision that she will make in collaboration with her neurosurgeon.”
You might know me from:
“Liz is a professional medical nerd who knows how to ask the right questions”
—according to Liz’s niece, who produces video games and is way cooler than Liz
Patient & Researcher Blog
My favorite part about being a patient and now researcher is learning new things and immediately applying them to my experience. Here’s what I have been learning over the years.
most-recent blog posts
a message for my long-time friends
I have been keeping this blog for 16 years.
I started blogging as an outlet to share about my experience living with a slow-growing, malignant brain tumor (grade II astrocytoma), colloquially known brain cancer. I started as a graphic designer, got caught up in the academic circus, and now I’m a researcher. I’ve learned people are supposed to evolve, have many lives, and be more than one thing.
At different times over the last 16 years I have been:
a passive subject of research,
an advisor in patient stakeholder groups,
and a leader in patient research engagement initiatives.
Today I work in health care. I am a communications professional, patient advocate, and emerging “patient-researcher”—all at once. And because my life has many facets, this blog is a space where I explore what it means to live beyond the treatment of a disease. Thank you for remaining my friend.
The realization that adaptive features are not covered by insurance—medical or otherwise—highlights the societal belief that driving is a privilege rather than a right. Those with the greatest access to financial resources and time will be among the few who can reap the benefits from adaptive driving technologies. I can see myself advocating for and contributing to policy changes that challenge the perspective that driving is a privilege. And that first step may involve admitting that I have a disability in the first place.
Earlier this year I was on a roll. I had just finished chemotherapy (again), and was up for an appointment at Harvard Medical School. Things were looking favorable for me. A patient perspective at a medical school just might become a reality! Except it didn’t.
If it’s too hard to use your right hand, use your left. If it feels really hard today, you are making progress for tomorrow (it gets better and you get stronger). Don’t be sad at what you lost, because you are rebuilding, always becoming something greater than before.
This article describes the work I have been doing to redefine the patient role in health care, research, and medical education… I felt validated to be featured here after the last year of my life where I faced a lot of unseen challenges.
A Perspective I wrote about shared decision making during awake craniotomy (brain surgery) was published a few weeks ago in the New England Journal of Medicine (NEJM). I am over the moon excited. From concept to publication, it took eight months for this Perspective to be published in the journal.
There exists no population-level evidence that taking the drug for that length of time is beneficial to the overall survival of people living with my disease.