It will never happen to me” This is a phrase that so many of us say throughout our lives. I will admit that I even used to say it. When I first learned what cancer was, I used to always say that such a horrible disease could never affect me or my family. None of my ancestors were diagnosed with any forms of cancer, so why should I be worried? Little did I or any of my friends and family know that a cancerous mass was growing in my brain since I was a toddler.
Things were going fine; my life was pretty normal up until the eighth grade. It was around October, 2004 when I started to notice that the hearing in my right ear was muffled. It was hard to hear one person when I was in a loud room. I told my parents and they scheduled me for an appointment with an Ear, Nose, and Throat (ENT) specialist. I performed different auditory tests, but the doctor said it was just allergies. My parents and I were not convinced, so I went to another ENT specialist.
He mentioned something called an Acoustic Neuroma i.e. a tumor that grows out of the inner ear canal and into the brain, but that was impossible since those types of tumors only appear in individuals over the age of 60. The doctors were baffled so he ordered more auditory tests. Unfortunately (or maybe fortunately) the doctor had planted the seed in my Father’s head. That night, my Dad immediately went on the internet and began researching exactly what an Acoustic Neuroma was. From October until the end of December, my hearing was getting more muffled. I was also getting extremely painful headaches and I felt nauseous “24/7.
My world came tumbling down (literally) on the last day of school before Christmas Recess. I was getting ready for school in the bathroom when I began to get really clammy and felt like I had to vomit. I ran to the top of my stairs and was about to call for my Mon, but I blacked out and fell down two flights of stairs. I hit my head on the marble floor and passed out. That was that. My parents scheduled me for an MRI. We needed to find out what was going on with me. I had my MRI and what the doctor found has forever changed my life.
At first, my parents were reluctant to tell me what was going on, but I wanted to know what was happening to me. They finally gave in to my constant nagging one night at the dinner table. We finished eating and I was about to go up to finish homework, when my Dad told me to sit back down, they needed to talk to me. All I could think was, “Oh crap, am I in trouble?” I was not in trouble. They sat me down to tell me that I had a brain tumor. WHAT? A brain tumor? Did I hear that right? I was speechless. Never in my right mind did I ever think that something like this could possibly happen to me. Oh look, it’s that famous phrase…”It will never happen to me.”
Once it clicked that my parents were serious, I completely broke down. I cried for the rest of the night. The next day at school I cried even more. I had no idea how to handle any of this, but I had great support from my friends and family. I had my highs and lows for the rest of the school year, but I got through it and graduated from grade school. I even received a scholarship to go to Monsignor Donovan High School in Toms River, NJ the following school year. I had my first surgery one week after my graduation…June 15, 2005 to be exact.
My first surgery was probably the scariest thing I have ever experienced. The needles, the smells, the sounds, the environment were so different and frightening for me. Right before I went into the OR, a man in scrubs and a mask came out, told me to say goodbye to my parents and that I will see them later, and wheeled me away. The last thing I saw when I looked back was my Mom crying and my Dad holding her. The surgery team put me on this table, put all of these blankets around me and told me to relax. RELAX!? I was freaking out…I felt like I was going to vomit. They strapped down my arms and put a big mask over my nose and face. The nurse gave me the anesthesia through a needle and I was
out in about three seconds. Sixteen and a half hours later, I was brought to the pediatric intensive care unit where I slept for the next two days. My recovery went well and I was back on my feet about a month and a half later.
Because the tumor wrapped around my facial nerve, it left some damage. The tumor was not removed completely because my neurosurgeon wanted to preserve the movement so I could smile. As he explained it to me in my post-op checkup, he “scooped” out the middle of it so that the tumor will shrink. My facial nerve was a little weak, but I could still use the muscle. Unfortunately, my nerve grew weaker and weaker throughout the school year. The weakness let do some problems in my right eye. I had to have a gold weight put in my right eyelid during sophomore year. I was having trouble blinking and I would get tiny abrasions on my cornea that became infected.
After my eye surgery, I had no problems. I was so thankful that everything was over. I did not have to deal with headaches, nausea, or dizziness anymore. My life was finally back to normal. I got through sophomore year, I celebrated my Sweet Sixteen and everything was great. I went for my six month MRI a week before my birthday, but my parents did not tell me how it went. I figured that if the other MRIs were “clean,” why should this be any different? Unfortunately, the tumor grew back double the size and sprouted to other parts of my brain. My parents did not want to ruin my special night nor did they want me to worry while school was still in session. They waited to tell me after exams that I had to go
back for surgery. This time I didn’t cry…I just became angry. I was angry with myself, angry with God and angry with the world. Why? That was the only question that came to my mind. Why was God doing this to me? I didn’t deserve this. I am a good person with a good heart. I lost faith in everything after I found out the tumor grew back.
The surgery went perfectly, but my recovery was a different story. I had to spend ten days in the recovery unit, three in intensive care…it was hell. The tumor grew so big that it was pressing on my brainstem, my facial nerve, the nerve to my right eye, the nerve to my throat muscle, and it was a quarter of a centimeter away from the trigeminal nerve; the one controlling the heart. The neurosurgeon had to cut the facial nerve to remove the tumor completely, so the right side of my face was paralyzed. He had to move the nerves to my throat and eye, causing me to have trouble swallowing and seeing. Fortunately, he did not have to move the trigeminal nerve; otherwise, I would have had an arrhythmia or worse,
gone into cardiac arrest. I lost 15 pounds and was so weak. I could not eat and was losing weight so rapidly they had to put a feeding tube down my throat. I couldn’t even walk down the hallway without feeling winded. After about three days in recovery, I gave up. I couldn’t do this anymore. Night after night I cried to my nurses and my Mom to let me leave, to take the tube out of my throat so I could go home. That was my life for those ten awful days in the hospital. I was finally discharged and got to my home, my own bed, my own shower, my own food. I was back to my normal life…for now.
Because I had no nerve impulses to my right facial muscles anymore, the risk of atrophy was high. I had to wait awhile, but I needed to have facial reanimation surgery as soon as I was done recovering from the last surgery. The facial reanimation surgery was broken down into two parts i.e. each one was over nine months to a year apart from the other. The first part of the surgery was performed October, 2008. The plastic surgeon took the superficial nerves out of the back of my leg and attached them to the ends of the nerves on the left side of my face. He also took a tendon from the outer part of my left thigh and put it into my right cheek. This past summer I had the second phase of the surgery. A muscle was removed from the inner thigh of my left leg and connected it from my upper lip to my temple. The nerves connected from the last surgery grew across to the right side and the surgeon placed the ends into the new muscle. The surgery was successful and I just started physical therapy to get the muscle moving on its own. I will keep going for therapy until the muscle and nerves regenerate, but for now I just have to pray and thank God for giving me a new life. Every day I thank him, because it always could have been worse.
My Mom and Dad have taught me to make my negative experiences into something positive. I whole-heartedly believe in the phrase, “what does not kill me only makes me stronger.” If I did not have the tumor removed, I probably would not be here right now. Fortunately, the tumor was successfully removed, and although I have many scars on the outside, it has not left scars on “the inside.” My experiences have made me strong i.e. stronger physically and mentally, my confidence is stronger, my self-esteem is stronger, everything seems stronger. Instead of wallowing in self-pity about what has happened to me, I try to use my experience to teach others the true meaning of life.
For example, the other day I was at the Kohl’s Department Store on Route 37, New Jersey. When I reached the woman at the register, she looked up with a surprised look on her face. She asked me, “Did you have a tooth pulled?” Instead of getting offended, I smiled and told her that I had facial surgery a few months ago. All she could say was, “God bless you.” I have been keeping track of how many people ask me if I had a tooth pulled (just for laughs) and, so far, 12 is the number.
Another way I turn this negative experience into something positive is by joking about it. Yep, you heard right, I try to make witty jokes about it. I started working at Under Armour in the Jackson Outlets in Jackson, NJ over the summer. The dress code requires that employees either wear jeans or shorts. It was hot, but I would never wear shorts because I was self-conscious about the scars on my legs. To me they looked so big and ugly, but when I talked to my parents about them, they told me that they were hardly noticeable. So, as not to suffer from the heat, I wore shorts to work for the first time. One of my fellow employees, who did not know what happened to me, asked what happened to my legs. I did not answer him at first thinking to myself, “Should I tell the truth, or make up some wild story?” I opted for the latter. Why not make light of the situation? Moreover, I did not want anyone to feel pity for me. I told him a shark attacked me and he totally fell for it. Unfortunately, I stink at lying so I blew my cover. I started hysterically laughing and ended up telling him the truth. People are so in awe when I tell them what happened to me. To me it is not a big deal, but to outsiders it must seem so horrible. I do not know, I never really thought about how other people would react to my story.
When I looked back to all of the times I was in the hospital, I always wonder why God put me through all of that. God is supposed to be this loving being; so why did he put me through hell? I realized why when someone asked me this past year what I wanted to do for a living. I want to be a nurse. My experiences have taught me so much about life and finding strengths in those around us. I have grown so compassionate towards people who cannot help themselves. Being a nurse would give me the opportunity to share my story and share my strength. Although it has forever changed my life, I look at being diagnosed with a brain tumor as a blessing now. Without it, I would have never found my inner strength and my relationship with God would never have grown so strong.