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!
Stronger Than Ever: Liz Salmi in Sacramento Magazine
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.
How I Wrote This: “Deciding on My Dimples” for the New England Journal of Medicine
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.
I am the population now: The tale of a brain cancer “n of 1”
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.
The diagnosis & plan: grade 2 astrocytoma, radiation & temozolomide
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.
Post-neurosurgery: age 29 and 42
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 feel freaking amazing: a post-brain surgery update
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).
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.