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!

Liz Salmi 6/12/22 Liz Salmi 6/12/22

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).