Hi. My name is Beth and I'm a twenty-two year survivor of a benign brain stem tumor. I was diagnosed when I was eleven years old, in 1985. I had two operations and radiation treatment at NYU University Hospital. I was very lucky that my parents chose the best of the best to treat me. Otherwise, I know, that I would not be here today.
I have numerous side-effects that resulted from all my treatments. My entire left side is not what it used to be. I used to be a gymnast, a dancer, and now I lack sensation in the palm of my hand, my fine motor skills have diminished, my balance is bad, and I have extreme difficulty using my left arm. Finally, I was adjusting to what became my life three years after my treatment. I was back at school and adjusted to my new walk. I was done being fearful of walking down the staircase or worrying that kids would unintentionally push me down during the four minute classroom changes. I was in high school and began making new friends.
At sixteen, my mom decided that we should move to a bigger home in the same town. This was going to be a new start. At least, that's how I thought of it. We could focus on positive things, and not only think about my health. Not long after we moved in, a new nightmare began. I woke up one night in agony. I felt like I was being electrocuted on the left side of my face. The pain was so bad that I punched my left cheek. It didn't help. I didn't squish the pain, like I hoped. The neuro-oncologist told me that I have nerve damage from the radiation treatment and it's called trigeminal neuralgia. When this pain started, in 1990, pain was not studied like it is today and information was not as easy to find. The internet was not a staple in one's daily life, like is is now. For thirteen years my parents and I traveled the United States searching for a treatment for my pain. We went to Philadelphia, California, Massachusetts, etc. I became a guinea pig and was given so many different medications to try. Nothing relieved me from the pain and I developed all of these side effects. I started twitching, trembling, seeing double, and I was in physical and emotional agony. My mom took me to the emergency room at least once a week. At the hospital we waited for hours before I was seen. Not one member of the staff understood my pain and I was treated like a drug addict. No one cared that I was desperate and devastated at how my life was. No one understood how emotionally paralyzed I was. I was afraid to move in fear that the pain would return. I could barely breath. I was so scared. I am so grateful to my mom because she was always there. She was there in the very beginning, offering to shave her head when I was losing my hair, trying to make the summer that I had my radiation treatment similar to a vacation, and taking me to the emergency room at three in the morning and then working full-time, too. She gave me the perfect hug and always allowed me to feel my mental pain. She is such a strong woman and I admire her and love her so much.
Finally, in 2002, I met a pain doctor who not only treats my pain, but he treats me with respect. My pain is finally under control and I'm able to breathe a sigh of relief. I can enjoy life again. I can relax, think clearly, and start thinking to my future.
I started thinking about my experience and decided to start a support group for benign brain tumor survivors. I was able to meet brain cancer survivors, but not others who had benign tumors. Both kinds are serious, but it's a different battle. I decided to call my support group the NJ Chapter Support Group for Benign Brain Tumor Survivors. We meet on the second Monday of every month at seven P.M. For now, the meetings are in Edison, NJ. As the group grows, the location may change.
I also started a website for benign brain tumor survivors called It's Just Benign. I'm giving you the link, http://www.itsjustbenign.com. I feel that I have a lot to offer children, parents, and loved ones. I feel that I have understanding that only a survivor can relate to and I also know what it's like being diagnosed as a child and then transitioning into adulthood. On my site are two newspaper articles about my experience and a five minute television interview about my support group. Take a look. I hope that you find it interesting and want to become a member.
Now, six years after being treated, I have created a nice life for myself. I work part-time, am on disability, have a nice circle of friends, participate in charity, and started these benign brain tumor support services. I hope that you will take advantage of them and get connected. After a decade of living in fear and uncertainty, I'm on the right path!
