About me

  • My favorite color is green
  • I have 2 rare brain tumors called gangliocytoma and a hereditary cancer syndrome called Cowden Syndrome
  • Started application process December 2013 for disability.  Was denied May 2017
  • Favorite soap opera:  “Days Of Our Lives”
  • Favorite movie:  “Grease”
  • I HATE the words root, stump, moist, and stiff. And I HATE balloons.
  • I want to take up bowling
  • LOVE(D) Disneyland
  • Here are my girls:
Kona and Tigger

Kona and Tigger


39 thoughts on “About me

  1. I really enjoy your blog, keep up the great work! It’s been hard for me to find blogs with people documenting their experiences with rare diseases. I’m running a social media campaign raising awareness for rare disease in Australia and this has been a learning process 🙂

    • I think there might be a few people in one of the support groups I check in on from time to time that are from Australia. Are you a rare disease patient as well? PS, thanks for the thumbs up! 🙂

  2. I should go check your friends blog out then 🙂 I don’t personally have a rare disease but noticed how under-represented it was in Australia and I wanted to learn more about it. I’ve only gotten FB friends following the campaign but if they’re more aware of rare diseases through me I’ll be satisfied.

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  5. Hi there.

    Thanks so much for sharing your journey. #4 on your list is just hysterical. I will never hear those words the same again.

    Thank you for stopping by my blog. Your blog and bravery are inspiring. Cheers.

    • Thank you for reading and commenting. 🙂 When I first began this blog last year I had NO idea how helpful it would end up becoming for me. One of my many tools in my back pocket for sure.

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  7. I was just going through my blog entries, and realized that you have read every one of them. Thank you for your kind words and for your interest and support of a stranger. Please stay in touch.

  8. I enjoy reading your posts. And thanks for always reading mine. I’m glad that I ventured into this world of blogging as it has assured me that I am not alone in my battles and has also introduced me to other brain tumor warriors such as you. Keep fighting and stay strong!


  9. Hi Heather, I was just reading a past blog entry of yours called ‘Heart’. Just to let you know, there is some info out there which links Cowden’s to the heart in that it can affect the contractibility of cardiac muscle. I posted a link on my FB page a while ago. Best wishes.

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