Obligatory pre-MRI post

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Me, four months after brain surgery 2.0, jumping in the air while waiting in line to ride Space Mountain. – Disneyland, May 2009The last MRI of my brain was on February 24. A week after that I had a shoulder surgery. I went six weeks without Temodar chemo (as opposed to the routine 4 weeks) because of the surgery, and then last month Temodar was pushed forward a week due to a low platelet count.

Why am I recounting all this information?In order for Temodar to make an impact you must keep a minimum level of it in your body. I experienced a success with 12 months on the drug before February 24. And now, on May 19 I will have an MRI which will determine if my slight adjustments in the drug schedule have messed with me. I am sure I am fine.But then there is the part of me that breaths in and prepares myself for possible bad news. I think, "I am so busy with work right now, how could I get by if I had to go in for radiation five days a week?"But then again, remember when I got diagnosed in the first place? And had to stop working completely? And then I lost my job and my friends had to raise money just so I could pay COBRA to continue my medical coverage? Remember all that crazy not knowing-ness of what I had? Remember when the Dr. House of Kaiser thought I could either have the early stages of multiple sclerosis or brain cancer--and I was actually hoping for multiple sclerosis? It's disgusting to wish for one disease over another. There is no good disease. There is no "good" cancer.I am cranky from working late today. I am now working six day weeks (and late two nights a week) thanks to the primary election in California. I am tired. Did I mention my car battery died last week leaving me stranded after hours at work?Whatever. I have brain cancer and I can handle anything.This time last year I was four months out from my second brain surgery and I was at Disneyland--just happy to be alive. I try to remember how that felt when I have days like this.

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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