Brain / CNS Tumors Support Group

In September of 1989, I was having massive headaches. Thought for sure that they were sinus or migranes.

Went to my family doctor and without even looking at me said that I had a sinus infection and gave me a prescription and told me to come back if I didn't get any better. Well, I didn't get any better and went back.

This time the doctor looked into my eye and saw pressure built up behind my eyes. He scheduled a CAT scan on the 9th of October. It was my day off. It really wouldn't have mattered anyway....I was having a hard time trying to get to work. I lived an hour commute and I was vomiting my way to work. In 6 weeks, I vomited and crapped almost 30 pounds off of me! Not a good way to loose weight.

Anyway, I had the CAT scan on the 9th. On the 10th which was a Tuesday, I saw my family doctor at 4pm. They took me to the exam room and left my wife in the waiting room. The doctor comes in and says it don't look good, you have a brain tumor. I said get my wife and that is the last thing I remember about that visit.

That night, I needed to call my Mother and let her know. I don't remember the conversation but the wife happened to be on the other line and told me about it later. Mother is on her way!

On Wednesday the 11th, I saw my neurosurgeon. I remember sitting in his office and having him doing neuro exams on me. Then I remember him telling my wife that he would see us tomorrow and to get my papers in order. We went to Subway.

On Thursday the 12th, I was admitted to the 10th floor of Florida Hospital in Orlando. This is the cancer floor and no one and I mean NO ONE is expected to leave under their own power if you know what I mean. They have private rooms with 24 hour visiting...no age limit., party central for all of the patients that they expect to die!

On Friday the 13th at 1300 hours at the age of 31, I became the 13th diagnosed case of a very rare brain tumor that has a bad history of coming back but worse the second time around. They put 31 staples in my head.

I personnally have lost about 6 weeks of memory. I have had people tell me what has happened in that time frame but my own memory is shakey at times.

While in the hospital, I had the chemo and radiation doctors stop by to visit me and tell me what they want me to do in my therapy. Luckily my surgeon came in and I asked him if I really needed chemo or radiation. He said, "I think I got everything"! That was good enough for me so I refused the chemo and radiation.

I still have yearly MRI's to make sure this bastard doen't come back. I have been lucky that it has not.

All I have to deal with is the headaches from the scar tissue buildup inside my skull.

If it does ever come back, I don't know if I would put myself in that situation again of going through the surgery and having to learn how to read and talk all over again. It is pretty difficult when you have your 9 year old son sitting on your lap trying to teach you how to read.
Posted on 02/18/08, 10:02 pm