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Timing is everything…

Published on June 30, 2023 in Share Your Story

Guest Author: Thomas B. in Maryland

One of my personal glib life mantras is “timing is everything.” So, it is cruelly fitting that I was diagnosed with a CNS Lymphoma brain tumor during Brain Tumor Awareness Month (diagnosis just confirmed in the last week). I truly appreciate support resources being available and may want to join the online support group, but I am too early in this journey as of yet. 

I do, however, feel the need to write something, so here I am. Given the circumstances, I am fortunate to live in the DC area and was a former National Institute of Health employee. I have been connected to their CNS Lymphoma team, and we will consult with them and find out next week what the path forward looks like. A word of (what should have been obvious) caution – do not ignore regular morning headaches. Due to other minor muscular-skeletal problems and the doctor’s input (they did do an early brain scan 6 years ago), I thought my every morning headaches were “normal.” Only when I manifested a blinding headache and loss of peripheral vision was it obvious an immediate trip to the emergency room was needed. If your symptoms change, no matter how subtle, no matter how they started – get yourself checked out!!

For now, I am staying away from online research into my issues and will trust the world-class team next week at NIH for advice and charting a path. Depending on how my personal journey evolves, I may well come back to this site for the online support groups, in the meantime, thanks for providing a resource where I could place some random thoughts.


Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.

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