I think, therefore I am

My brain is having its photo taken tomorrow via MRI. I will be having MRIs every two months over the next year as I continue to take Temodar (chemo). I have been on this drug for five months, have been relatively symptom free (i.e., seizures are under control), and I am excited to see what the scan shows. My last MRI was in May and it looked good: there was no sign of growth and, if anything, it looked like some cells may have been disappearing.

Thanks to the promising scan in May, the right combination of seizure medication, and getting my driver's license back, I have been feeling very "normal" lately (in a good way).

In early June I decided it was time to start looking for a job, and I gotta say, it was weird trying to figure out what to put on a resume about lost time in the work force. Fortunately in this economy potential employers don't seem concerned that I haven't worked since my last surgery (which was six months ago!). They see my last employer was an architectural firm and figure I was probably laid off.

Over the past month I have been busy applying for jobs, having interviews, having second interviews, etc. Actually, every job I have interviewed for has given me a second interview. Actually-actually, I have been interviewed for every job at which I applied. Score! Even if I don't get offered any of these jobs I feel good even being part of the process. Really! All this makes me feel so "normal" and non-brain cancer-y.

But I have an MRI tomorrow. I am not nervous because I know Temodar is working and I know how my body feels, but I don't like the idea that all the progress I've been making toward getting back to my "normal" life could all disappear with just one piece of information--a new MRI scan. If the scan shows growth then my doctor will suggest radiation as the next course of treatment.

I know I am lucky to be doing well post-surgery and during treatment. And because I am doing well I need to keep telling people about brain tumors and other central nervous system cancers because many, many people in my position have significant losses in cognitive functioning. And many, many, many more people aren't alive anymore. These people can't advocate for themselves--it is the families who are left with the void wondering why these tumors developed (there are no known reasons).

If I can still think, write, walk, feel, use logic, and now drive a car, I better not take my brain for granted.

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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