Bringing Punk Rock to Health Care
A new article in Sacramento Magazine describes the work I have been doing to redefine the patient role in health care, research, and medical education.
Hi, I’m Liz.
I’m a former punk rock drummer turned cancer patient, and now research dissemination strategist at an academic medical center.
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 15 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 15 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.
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.
I still have a grade 2 astrocytoma. This is great news, however if the last few months tell us anything, despite pathology and all the science my tumor is not behaving like other grade 2 astrocytomas. This is what continues to worry us but we take the positive and move forward.
It has been two weeks since my fourth neurosurgery… As I review old videos catalogued on external hard drives (not to mention the hundreds of blog posts that exist on this website), what is becoming more clear to me is that I’ve always viewed this brain tumor adventure through a lens of adventure and self-discovery.
I know there are many weeks left to healing, but if you didn’t tell me I had brain surgery six days ago I’d be ready to roll into work on Monday morning at full speed.
The tumor tissue samples resulting from surgery were generally favorable—this is good news, but also not what we were expecting. We continue to see grade 2 astrocytoma—which is amazing, but also kind of unbelievable after 14 years of living with a malignant brain tumor. The tumor board decided to proceed with further analysis of the tissue; updated results will be available in the coming week(s).
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 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.