I was just a frilly girl who loved gymnastics and dancing. I knew that my mom was successful in part, because of her education, I planned on getting an Ivy League education, like both of my parents. I practiced gymastics and studied. I was proud of my high grades. That was how it was, in my eleven year old mind.
Even today, as a 36 yr. old woman, I haven't been able to fully absorb how my life changed because of my brain tumor diagnosis.My parents found out and two weeks later the brain surgery was scheduled. Two weeks may sound like a long time to you but, treatments were much different in 1986. I think my parents met with two or three neurosurgeons and decided on Dr. Fred Epstein. I remember being told that I would need surgery and was scared about it but, I knew that I didn't have much of a choice.
I don't remember if anyone spoke to me about how I would be after the surgery was performed; I think they hoped for the best. I would have managed well, even with the side effects from my two operations. My side effects included bad balance, muscle weakness, unsteady left arm and hand, and a deaf left ear. Physical therapy was barely alive at that point and I did not learn a thing from the therapist who came to my home. I woke up not knowing how to use my body anymore and a therapist wanted me to walk in a straight line, like one foot in front of the other. It was a ridiculous request and it's shameful that she didn't realize it.
I don't feel that the brain surgery was so crippling rather, it was the radiation treatments. Several years after the treatment ended I woke up with an excruciating and crippling pain. The oncologists told me that I have trigeminal neuralgia. This pain feels like I'm being electrocuted on my left facial cheek. He said it so matter-of-factly, like it did not matter that I was in agony and that my life was being ruined. I know that he is still practicing and I wish I was a person that would be happy to defame his name but, I'm not. I've met a pain doctor who actually helped me about six years ago but, I lived with pain between the years of 16-28 years old. I graduated high school, pledged a sorority, graduated college, and traveled all while I was being zapped with my trigeminal neuralgia pain. Nothing is as magical when you're in constant pain.
My life has been going really well the last number of years. Finally, right? It only took 17 years. I've been steadily working, feeling well, and have started and developed this wonderful website.
It's unfortunate that having a brain tumor doesn't give me a free pass for any other illness. I'm 36 years old now and although still young, it becomes more likely that I could get diabetes, breast cancer, heart problems, etc. I had to follow up with doctors the last few times I've had my blood taken. Usually I see a specialist and it's nothing; I don't need to worry. It's just scary to think how my future could be. I have trouble keeping track of my life now, all of these good things are happening. I'm afraid that I would lose everything wonderful and happy, and then my sanity will leave if anything else happens. Do any of you feel like that would feel like that?