MRI looming and I’m just happy to be alive

This may sound odd, but I am looking forward to my MRI next week.

I am around the two-year mark of the discovery of my tumor. The time really flew by.

I am going to talk to Super Awesome Nurse about doing one more month of temozolomide (cycle 18) and then pausing treatment until after my wedding (!), honeymoon (!), and the November gubernatorial election (too busy at work).

It is incredible looking back at the past two years and remembering all the things I have been through. The worst parts were "not knowing," and I guess that comes up every few months… even today.

You wonder, "What will the MRI look like this time?"

"How tired will I be during this chemo cycle?"

"How constipated am I going to be at work today? Do I really want to risk it with a laxative?"

But in the grand scheme of life, that stuff isn't so bad.

At work today I ran into a woman I rarely see around the building. She said, "How are you liking it here?" And I said, "It's great!" And she said, "Well, you sound happy!" And out of nowhere I blurted, "I'm just happy to be alive!"

I think that left her somewhat confused.

And now that I think about it, it is a blessing to even be able to recognize happiness in the simplicity of living.

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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Taking a break from temozolomide

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Sunshine and rainbows