Four months at a time: living between brain scans

I live my life four months at a time. After a good scan I am happy to move forward with my life for a while.

PHOTO: Scientifically valid pie charts of my worry over the last few years. /s

PHOTO: Scientifically valid pie charts of my worry over the last few years. /s

In some cases I do long-range planning: I am going to a wedding this summer. My BFF wants to go to Seattle with me in the fall. Brett and I want to go to Japan in a year.

But that's as far as I get.

I don't let myself hope for a dog anymore. Kids are out of the picture. There's just two of us, so our housing situation is OK.

Where do I want to be in five years? Hell if I know. I just want to be alive.

Last night I had a (rare) freak out. You know what I am talking about: something pops in your head and suddenly you fear for your life.

This doesn't happen to me that often, and when it does, it is bad.

I feel bad blogging about fear and freak outs because it makes me sound like I get down on myself. This isn't true. I just happen to own a space on the Internet where I am allowed to tell the world that living with a slow-growing brain cancer can be scary sometimes.

Liz Salmi

Liz Salmi is Communications & Patient Initiatives Director for OpenNotes at Beth Israel Deaconess Medical Center in Boston. Over the last 15 years Liz has been: a research subject; an advisor in patient stakeholder groups; a leader in “patient engagement” research initiatives; and an innovator, educator and investigator in national educational and research projects. Today her work focuses on involving patients and care partners in the co-design of research and research dissemination. It is rumored Liz was the drummer in a punk rock band.

https://thelizarmy.com
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How the rest of the medical community deals with cancer

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My friend Logan: First person I knew with brain cancer