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Thread: I wrote a book

  1. #21
    Thank you both so much!
    grand mal seizure leading to MRI discovery of a suspicious brain mass in left temporal lobe May 24, 2013
    99% resection of a WHO Grade II diffuse fibrillary astrocytoma July 11, 2013
    1st postoperative MRI October 11, 2013 - clear for any regrowth
    occasional complex partial and absence seizures
    Clear MRI September 2016
    Regrowth on MRI March 2017
    200 mg of Topamax daily

  2. #22
    Regular User
    Join Date
    Apr 2015
    Posts
    19
    Some good comes out of every experience, I too will be searching for your book!

  3. #23
    Quote Originally Posted by Mom Liz View Post
    Some good comes out of every experience, I too will be searching for your book!
    Thank you!
    grand mal seizure leading to MRI discovery of a suspicious brain mass in left temporal lobe May 24, 2013
    99% resection of a WHO Grade II diffuse fibrillary astrocytoma July 11, 2013
    1st postoperative MRI October 11, 2013 - clear for any regrowth
    occasional complex partial and absence seizures
    Clear MRI September 2016
    Regrowth on MRI March 2017
    200 mg of Topamax daily

  4. #24
    Regular User
    Join Date
    Apr 2015
    Posts
    19
    I got the book and really thankful you wrote it. It helps me to see life thru what my son has been going through for 10 years. I have never seen phenomenon and will watch it soon! I got on this site because he had a third re growth, a third surgery soon, and I am terrified that it will go from grade 3 to 4. We have had many "remissions" he just turned 30 and met the love of his life 2 months before the bad MRI. It is crazy!will post mire as I get thru the book. Thanks again!

  5. #25
    Quote Originally Posted by Mom Liz View Post
    I got the book and really thankful you wrote it. It helps me to see life thru what my son has been going through for 10 years. I have never seen phenomenon and will watch it soon! I got on this site because he had a third re growth, a third surgery soon, and I am terrified that it will go from grade 3 to 4. We have had many "remissions" he just turned 30 and met the love of his life 2 months before the bad MRI. It is crazy!will post mire as I get thru the book. Thanks again!
    I'm so glad. Writing it was really cathartic for me, and publishing it to share with others was very meaningful. I'm very glad it is helping you. Thank you so much for sharing with me what it means to you and keeping me posted! I continue to hope all goes well for your son.
    grand mal seizure leading to MRI discovery of a suspicious brain mass in left temporal lobe May 24, 2013
    99% resection of a WHO Grade II diffuse fibrillary astrocytoma July 11, 2013
    1st postoperative MRI October 11, 2013 - clear for any regrowth
    occasional complex partial and absence seizures
    Clear MRI September 2016
    Regrowth on MRI March 2017
    200 mg of Topamax daily

  6. #26
    Super Moderator Top User Hope2012's Avatar
    Join Date
    Nov 2011
    Posts
    888
    Do you have to have a kindle to read this? I have apple products and wondering if the format will allow me to read it.

    Thanks
    This dark night shall end and the sun will rise again...
    Believe

    - Dad diagnosed in 1992 with primary bladder cancer
    - bladder removed and new one made from resected intestine
    - chemotherapy regimen started
    - mets to large intestines discovered in 1993...more chemo...tumors disappearing
    - complained of neck pain Dec 1994. Mets to brainstem confirmed
    - passed away Feb 24, 1995

  7. #27
    Moderator Top User
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    858
    Quote Originally Posted by Hope2012 View Post
    Do you have to have a kindle to read this? I have apple products and wondering if the format will allow me to read it.

    Thanks
    You can download (for free?) a Kindle reader, there is a Mac OS version. Go to the Apple app store. It will also work on iPad or iPhone.

    Amazon use a different format to other ebooks, so you need a dedicated reader app.
    Wife died from a GBM, November 2012. The full story in this thread

  8. #28
    I was able to read it during my daughters nap time. Fantastic!! Great job

    Also, the week I knew I was getting my MRI, and for several years before that "its not a toomah" was a frequent joke between myself and several people. Turns out it was!
    Had surgery 10/21/14 to remove Grade II Astrocytoma in right temporal lobe. 95% or more resection. Undergoing Clinical trial through UCSF taking Temodar and Everolimus for two years total.

    1500mg Keppra, 600 mg Gabapentin daily

  9. #29
    Super Moderator Top User Hope2012's Avatar
    Join Date
    Nov 2011
    Posts
    888
    Quote Originally Posted by Lboy View Post
    You can download (for free?) a Kindle reader, there is a Mac OS version. Go to the Apple app store. It will also work on iPad or iPhone. Amazon use a different format to other ebooks, so you need a dedicated reader app.
    Thanks Lboy!

    I've downloaded kindle and have started reading your book...its riveting!!
    This dark night shall end and the sun will rise again...
    Believe

    - Dad diagnosed in 1992 with primary bladder cancer
    - bladder removed and new one made from resected intestine
    - chemotherapy regimen started
    - mets to large intestines discovered in 1993...more chemo...tumors disappearing
    - complained of neck pain Dec 1994. Mets to brainstem confirmed
    - passed away Feb 24, 1995

  10. #30
    Thanks, everyone! I can't say how much it means to me to be able to share my little book with the world. The response has been overwhelming and I'm truly grateful.
    grand mal seizure leading to MRI discovery of a suspicious brain mass in left temporal lobe May 24, 2013
    99% resection of a WHO Grade II diffuse fibrillary astrocytoma July 11, 2013
    1st postoperative MRI October 11, 2013 - clear for any regrowth
    occasional complex partial and absence seizures
    Clear MRI September 2016
    Regrowth on MRI March 2017
    200 mg of Topamax daily

 

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