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Oops, the link didn't past correctly. Here is the correct link- http://www.elephantjournal.com/2013/10/life-before-brain-can

Hello everyone, I recently had an essay I wrote about having brain cancer published on elephantjournal.com . Here it is for anyone who would like to read it- elephantjournal.com /2013/10/life-before-brain-cancer-a-love-affair-with-the-past-karissa-kneeland/" target="_blank" rel="nofollow">http://www.elephantjournal.com /2013/10/life-before-brain-can


Karissa

Hello,

Do you know if your tumor has the 1p19q codeletion? If so, that is very good news as it means it is more responsive to treatments and has a slower progression rate. I have heard many stories of people who have been living with this type of tumor for 20 plus years!

I am also wondering about the MIB-1 proliferative index. It seems that grade 2's are usually less than 2%, but mine was 7.7%. How can a grade 2 tumor have such a high index?

I had a tumor growing in my left temporal lobe for about 10 years before being diagnosed when I was 23. Apart from a few partial complex seizures a month and anxiety, I felt fine. After surgery, I never felt myself again. I had my entire left anterior temporal lobe, amygdala, and hippocampus removed. This was my only treatment, no chemo or radiation. It is said to be a mystery glioma- a hodgepodge of mixed glioma and glioneuronal tumor components. It's a grade 2. I was told that recurrence is inevitable, but to go on with my life. But my life has felt like it has been put on pause since the surgery. I always feel as if I am filled with posion, or that I am fighting off germs. My eyes are always bloodshot and puffy, my head twitches and pounds, I am unable to sleep normally- I usually fall asleep, have a quick dream and wake up every hour, often I lay awake for hours every night trying to fall back asleep- I have no energy. My doctors dismiss me as depressed. I am aware of what depression is. I know that this is not what I am feeling. I have every desire to accomplish my goals and to go out and enjoy my life. I love to read and go to the movies, but my eyes always feel so tired I have to shut them. What I am feeling is frustration. I have also had a slew of food allergies/sensitivities come up- gluten, soy, dairy, caffiene. I can't handle any alcohol anymore- 1 glass of wine makes me feel like my head is going to explode. I just do not feel well enough to go out, apart from walking the dog. I am 27. I feel like I'm 87. I would like to know if anyone else has experienced this after brain surgery.

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About Krissalee85

Patient, Survivor
Brain Cancer
Acupuncture, Alternative Treatments, Cancer Diagnosis, Cancer Nutrition, Diagnostic Imaging, Diet, Emotional Support, Genetics, Image Enhancement, Insurance, Lifestyle, Naturopathic Medicine, Spiritual Support, Supplements, Surgery

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