Brain Tumor

I was diagnosis with a malignant (cancer) brain tumor in May of 2000, shortly before my 14 b-day. I had to go to Arnold Palmer Childrens Hospital because there were, and probably still are, very few pediatric nuerosurgeons in the United States. I live in Ormond Beach, Florida and this Hospital is in Orlando, Florida which is about 1 hour away. I had it removed a day after I was diagnosed and ended up lying in a hospital bed in a coma-like state for my 14th b-day. I was in the hospital in that coma-like state for 6 weeks after the surgery and then I was moved into a rehabiltaion home for another 7 weeks. I had physical, occupational, and speech therapy while there. I couldn't talk for 7 1/2 weeks after the surgery. Of course, I didn't get speech therapy for the first 1 1/2 weeks at the rehab center because I couldn't talk. I went through 6 1/2 weeks of radiation and 52 weeks of chemo thearpy on top of that, which was loads of fun (sarcasm). It was hard because the tumor was on my brain stem and severely affected my balance and the coordiation in my left hand. I also went through tons of physical and occupational thearpy after I came back home and have improved my balance and coordination immensely, though it's not where it was pre-surgery. I made it through all that and then 11 years later, the doctors discovered another brain tumor . I had it removed in January of 2012 and luckly it wasn't malignant, so I didn't have to have to get chemo thearpy or radiation again. It was also right beneath my skull, lying on my brain and it wasn't in a crictcal area like the first one was.It was near my left temporal lobe which is pretty much where the top of the ear touches your head if you flatten it with your hand. But, it's still brain surgery no matter how you roll the dice . Remember, I was 14 at the time this happend so I was in the 8th grade and thus it had an enormous impact on my socialization. I was homeschooled for 9th and 10th grade and went back to public school for 11th and 12th. I had friends in highschool b/c some of the kids that went to middle school with me also went to the same highscool that I attended. But the problem was I had no real close friends and I tended to isolate myself from other people when I wasn't in school because I felt so different. Then after I graduated from highschool, it became worse. I didn't know very many people at the college I attended and the isolation got worse. I got my AA and decided I had enough of school. Needless to say the isolation got even worse and then I found out I had another brain tumor, after 11 years tumor free. I had surgery to remove it in January of 2012. It wasn't cancer, so I didn't have to go through chemo or radiation. It wasn't in a critcal part of my brain either, so I didn't have any side effects from the surgery. A month and a half later I fell into a deep bout of depression b/c of all the isolation I had been putting myself through and from bottling up all my feelings from the surgery in 2000 and 2012. It's better now, but I still have days when I get down.

Comments

  • 5 Comments sorted by Votes Date Added
  • I can relate to a lot of what you posted.
  • ryan22ryan22 Community Member
    These are tumors that stay in negligence the mind by which they started and do not spread into and destroy other parts of the brain. They don't spread with other areas of the body. If a benign tumor can be taken off successfully it shouldn't cause any more problems.

    However, sometimes it's tough to get rid of the tumor due to the position inside the brain, or since the surrounding brain tissue might be damaged by surgery. Some benign tumors will regrow slowly and, should this happen, treatment with radiotherapy or further surgery may be required.
  • Survived: I don't know if this will mean anything to you, and I hope it doesn't sound insincere since I've never met you, but simply put, you are amazing. For real...people like you impress the shit out of me.
  • Thank you Rico. Sorry I didn't respond earlier, but I tend not to check these blogs very often. I wish I could look at myself and be impressed, but I tend to look at what the surgery, chemo, and radiation has done to me and also the repercussions of going through these treatments.
  • I find stories like yours both terrifying and uplifting. I had my surgery and was diagnosed in March of 2012. In all honesty, your stories captures the greatest fears before going in for brain surgery.
    Thankfully mine was in the right frontal lobe and I had very little side effects from the surgery.
    I fear a recurrence with every new MRI, and your story kind of validates why. Having been clear for 11 years and finding another a new tumor must have been devastating and I don't think anyone could blame you for going into a depression.
    Keep on trucking and I hope the best for you.

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