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Why Am I so Lucky with a Gliomatosis Cerebri?

Published on August 12, 2014 in Share Your Story

Why Am I so Lucky with a Gliomatosis Cerebri?


There are so many brain tumors and very little etiology or even research funding toward treatment. So, when I ended up diagnosed with such a rare tumor, why did I feel so lucky?

  1. I only had to have a brain biopsy that I healed from very quickly.
  2. Because my tumor was inoperable, I did not require a craniotomy or any type of resection, which could have taken me much longer to heal from than just a biopsy.
  3.  I started treatment on the least aggressive path of oral chemotherapy, which I tolerated well from home. 375mg of Temodar for the first 5 days of a 28 day cycle was much better than any IV chemo in my mind.
  4.  I only had “focal seizures” and they have been well controlled with Keppra.
  5. I still have a Papilledema that is healing from the pressure this tumor caused me, but I have NEVER lost full vision in either eye, have regained all color perception, and just have some blurry/field of vision/light sensitivity issues in my left eye.
  6. The tinnitus I had at one point in both of my ears is only in the left ear now, so I can’t complain about the right ear functioning well!
  7. Other than focal seizures, I have no physical neurological deficits. I can walk and talk and do the things that most other people can do!
  8. While I’m not able to drive, I’ve had amazing social support to bring me to appointments and anywhere else I need to go.
  9. Just being able to do 6 weeks of radiation WITHOUT chemo is amazing.
  10. My most terrible issues I’ve had to face are “treatment related effects”. You know, “chemo brain,” issues with steroids, fatigue, nausea, etc. Could be MUCH worse.
  11. Now, coming to the fact that I might lose my hair…It doesn’t bother me. My mom bought me some hats from a charity called Love Your Melon ( If I do lose my hair, I’m more than happy to shave it for St. Baldrick’s ( Both amazing charities!

So, for those who feel there is no way to be considered “lucky” when given a diagnosis like this, please remember…I am not sure of a prognosis, but I don’t feel that I have a death sentence on me. I wake up everyday as a reasonably well adjusted person with a positive attitude.

Life has never gotten me down before, and I’m not going to let it start to now!

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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