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!
Seizure drugs: Where is our jetpack?
By the way, no matter who you are, or what you do, someone will always be older than you and will be able to get away with belittling your minor neurological deficits.
Feeling the love
July is just around the corner and that means it will be my birthday soon. I will be 35, and I say that with great pride because getting older in this uncertain world (i.e., living with an astrocytoma) means appreciating every day.
What I wish I knew before my brain was diagnosed with cancer
The most frustrating part of cancer is that it doesn’t discriminate. Cancer doesn’t care for whom you voted, or to which god you choose to pray. Some of the most controversial matters humankind wastes our time fighting about are rendered meaningless in the face of a disease like cancer.
This is not a death sentence
To those of you diagnosed with a brain tumor–malignant or otherwise–for the love of god (or whatever you believe in), don't tell yourself the diagnosis is a death sentence. Be as negative as you want. Dread the biopsy. Freak out about the brain surgery. Get sick of chemo. But don't tell yourself this is death sentence.
Special certificate: brain cancer
A cancer-versary is like an award. I wish I could add "cancer survivor" to my LinkedIn page right after the section about Honors & Awards. Or maybe I can add it to the section about special certificates?
Redefining the support group: my TEDx talk
Liz Salmi, a patient advocate, talks about her decision to be open and share what it is like to live and blog about living with brain cancer in 2013.
How to participate in the #BTSM tweet chat
#BTSM is a patient-run, Twitter community and is not owned by any organization, nonprofit or otherwise. We are for patients and care partners, by patients and care partners. Use the #BTSM hashtag anytime, and join us for a live Twitter chat on the first Sunday of each month.
Top 10 reasons I am a brain tumor advocate
This week I joined with hundreds of my fellow brain tumor advocates from around the country in Washington, DC, to attend the annual “Head to the Hill” lobby day organized by the National Brain Tumor Society. This is the second year in a row I've traveled to our nation’s capital to educate our members of Congress on critical issues currently facing the brain tumor community.
Support groups are not for everyone
I realized I never wanted to go to a general cancer support group again. On the way out I asked the social worker if there were any brain cancer groups. She handed me a list of with about 200 groups around the greater Sacramento region. Just one group focused on brain tumors. I needed to head to the Internet to find all of you.