My name is Beth and I'm a 30 year survivor of a childhood benign brain stem tumor, a Brainstem Glioma. I was diagnosed when I was 11 years old, in 1985. I had two operations and radiation treatment at NYU University Hospital. Since then, I've been on the challenging road to recovery. My journey has been extremely difficult; everyday
I battle physical limitations, financial issues, and social issues, but I realize how lucky I am to be alive today. I would not be alive today if my parents didn't choose the best of the best (in 1985) to treat me. I can breathe, eat and walk on my own: thanks Dr. Epstein!
The numerous side-effects resulting from all of my treatments compile an alarming list. As a child, I was a gymnast and a dancer. But those joyful days of cartwheels, backbends, and jazz dancing are a memory of my former self. After the surgery, I woke up to a left side that was no longer functioning "normally." I no longer have sensation in the palm of my left hand, my fine motor skills have diminished, my balance is bad, and I have extreme difficulty using my left arm, hand, fingers, and same with my left leg and foot. However, I was adjusting to what became my life -- three years after my treatment. I was back at school and adjusting to my new walking style. I was done being fearful of falling down the staircase or worrying that kids would unintentionally trample me during the four-minute classroom changes. I was in high school and I began making new friends; and I finally started to smile again.
At age 16, 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. Information was not as easy to find and no one wanted to treat a child. The Internet was not around, like it is today. I didn't feel like any specialist cared about this 16-year-old girl who was suffering.
For 13 years my parents and I traveled the United States searching for a treatment for my pain. We went to Philadelphia, California, Massachusetts, among other locations. I became a guinea pig and was given so many different medications to try. Nothing relieved me from the pain and I developed even more side effects. I started twitching, trembling, seeing double, and I was in physical and emotional agony. I also had two procedures to sever the nerve and they not only didn't work, but my cornea was damaged and I almost was permanently blind. My mom took me to the emergency room at least once a week for the pain. We waited for hours before I was seen at the hospital. 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 just terrified. 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 doctor who not only treats my pain, but he treats me with respect. My pain was finally under control after living in chronic pain through the end of high school, all of college, and for my first couple jobs after graduation. I was able to breathe a sigh of relief. I started enjoy life again. I could relax, think clearly, and at 28 years old was finally able to think about my life and future.
I never once met another benign brain tumor survivor throughout my 20+ years of surviving, so I was ecstatic when I found a local support group to go to. At the group I was able to meet brain cancer survivors, but not others who had benign brain tumors. Both kinds are serious and support is needed for both, but they are different battles. Benign brain tumors and the journey is a completely different path, compared to those diagnosed with malignant brain tumor. I wasn't getting the support I needed at the group and once I heard someone describing a benign brain tumor as "good" I knew this was not for me. My tumor physically limited me, left me in poverty, and ruined my dreams: so this wasn't a "good" tumor.
My mission after that experience was to make a better world for benign brain tumor survivors. I started a website for benign brain tumor survivors called It's Just Benign, www.ItsJustBenign.org. The majority of the membership on the website is compiled of survivors. It's been incredible watching survivors connect, especially knowing how isolated members felt. The website has almost 1,200 members all over the globe including Canada, France, Belgium, and Indonesia! That means that there are 1,700 survivors who can offer support, advice, and encouragement to each other, and 1,700 experiences from which to learn. It's incredible watching someone from South Africa connect with someone in Manhattan on ItsJustBenign.org because they have the same rare benign brain tumor type or because they both have chronic seizures.
I truly never understood how my trigeminal neuralgia affected my life until the last decade. I lost my childhood and my education, my career and my emotional development were impacted. Therefore, I'm not like the "traditional" 40 year old. I work part-time, am collecting federal disability, have a nice circle of friends, and keep busy running It's Just Benign. However, it is certainly not the life I imagined. I miss so many things that I can't do. I miss riding a bike, doing cartwheels, and roller-skating. I miss not having to think before I act. Do I have my hearing aid and ear plug? Do I have my medicine? I miss going to concerts of all types and being near loud music. I already lost the hearing in one ear and I have high frequency loss to the other ear (the good ear). I'm not risking the little hearing I have left. I miss wearing sexy high heels and I miss running. My left ankle will give out and I will hurt myself. I miss eye make-up. I have nerve damage to my left eye and I use a ridiculous amount of eye drops. I miss being invited places. I can't go because it's too loud or it involves balance, so not everyone invites me places. I miss never feeling in control of my life. I can't between having all these side-effects and not making enough financially to support myself. I miss not having biological children of my own. I miss the life I dreamt of when I was young. I realize there are some things in my life that are good and make me happy but, it is painful to think about what I won't be doing or won't ever have. However, I am trying to focus on the positive because there are far worse things in this world.
2016 update: I've been very ill these last 2.5 years and I've realized that this medical system is a big, fat failure in my case. Not one physician mentioned key issues and asked some important questions within these last 30 years. I should have been asked these important questions since technology was updated, at least by 2000. I found out that I need prism eyeglasses, which really help. Not one ophthalmologist ever did a vision field test on me. Nor did anyone ever mention that overusing my right side would cause muscle tightness and bursitis. I'm shocked at physicians and I've gone to respected ones. I also found out that my left toes can't tell when someone points them up or down. It's a disgrace that I feel many physicians; physical therapists, etc. are puppets. They don't think and just go through the motions.
The good news is that I am very vocal now when it comes to medical professionals. I know much better what I need than they do. I don't blindly trust them anymore. And that's really sad that sick people have to use their energy this way.
After these two horrible years, I'm doing pretty well. Still on disability, getting It's Just Benign back on track, and looking into finding a fulfilling job. I realize I have a lot to be grateful for.