My Journey

My Journey

Rosa

Wow. Where to begin? I was ten years old. I began to have these…auras. A strange feeling would flow through my body. Sometimes I lost consciousness, and would walk to a person I trusted and squeeze their wrist with an insane amount of strength. Even though I was not aware of my surroundings, I would say “I’m okay. I’m okay.”

This lasted anywhere from 30 seconds to 2 minutes. And then immediately I would need to sleep for 2 hours or so. I made my parents aware and we went to doctors left and right, but our only responses were “blood sugar” and even “I think she just likes the idea of being the ‘sick one’.”

My grades had gone from A’s to F’s. And these seizures were not stopping. Finally, my dad witnessed one on the softball field and they knew something wasn’t right. We found a doctor who referred me for an MRI. And there, my life was changed forever.

I was diagnosed as having complex partial seizures caused by a low-grade astrocytoma in the left temporal lobe that was infiltrated. Basically meaning this mass was inoperable because it was in such an important part of my brain. My left temporal lobe operated my speech, language skills, reading comprehension, long and short-term memory, and every other part that makes life worth living. After seeing every doctor up and down the east coast, I was faced with a heart wrenching decision: quality or quantity.

My local neurologist and neuro-psychologist encouraged us to take a conservative, or “watch it”, approach. They stressed the concept to let me live my life as it was, and control these seizures with meds as much as possible, as the tumor was slowly growing. However, many doctors at hospitals such as Duke and John’s Hopkins with Dr. Benjamin Carson wanted to take an aggressive approach and take the tumor out. Yet, the probability of me maintaining my quality of life was out numbered. We were told there was an 80% chance I would lose my speech and memory. And might very well face significant deficits that would alter my life forever.

After much worry and many prayers, my parents chose the “watch it” approach. And for eighteen years, I lived my life having seizure after seizure, yet always being reminded that I was no different than anyone else in this world. Having four older sisters, I guess I just sort of fell in line and did what everyone else did despite my “inconveniences”. Though one of my triggers for seizures was being overexerted, I played softball and was a cheerleader through high school.

I hiked Half Dome and the Grand Canyon in college with some friends. Though I was made fun of and talked about, I learned the meaning of a true friend and gained some on the way. Though I had a 504 plan and received assistance through programs in college for students with learning disabilities, I graduated high school and received the Promise Scholarship.

I went to college and graduated on the Dean’s List with my Bachelors in Special Education and Elementary Education. Though I could not drive myself, I got wonderful jobs and taught special needs students for four years. And even though I came with a lot of “baggage”, I met a man who loves me for who I am, rather than what my MRI’s say. And so, 18 years later, we moved to Ft. Bragg and became established with neurologist(s) at Duke University Hospital. My seizures had become worse. I had been on about every medication possible and they were pretty uncontrollable. Even with a Vegas Nerve Stimulator surgery in 2010, they still could not be contained. They began to last longer, be more frequent, and even cause me to urinate myself when I had them. But at Duke, a wonderful neurologist gave me information I never thought I’d have.

After another MRI, there had been growth between a 6 month time span. I was referred to a neurosurgeon who insisted upon a biopsy to see if the tumor had become malignant. My dad asked if there was any possibility that Dr. Friedman (the neurosurgeon who operated on Senator Kennedy in 2010) could possibly look at my charts. The doctor basically said she doubted he would, but she’d ask for us. As I was in tears and we were leaving, we were stopped and asked if we could wait about twenty minutes. Dr. Friedman had seen my charts passing in the halls and decided to take my case. And there, things began looking up. Dr. Friedman told us a biopsy was not necessary. However, because I had had the tumor for 18 years, there was a possibility that what was once controlled to my left side, could have basically “switched” to my right.

It would take testing but there was the possibility. I had a WADA test. If you’ve never had one before, it’s basically where you are buck-naked with probes all over your head in front of about forty doctors and they turn off one side of your brain to test the other. Each doctor monitors different things, your speech, your memory, your cognitive skills, your eyesight, etc.

You are shown a variety of pictures and asked to name what you saw. You are asked to pick the square out of a bunch of circles and so on. Then, you sleep it off, they turn off the other side, and the process begins again. And blessed be God, I was let known at my next appointment that the bulk of my memory had switched to the right side of my brain and my speech and language and cognitive skills had switched to the frontal lobe and back. And once again, after a lot of praying, the peace of God came over me, and brain surgery was given a go. I was awake for the majority of the surgery. See, they had probes all over my head and were testing my skills once again.

Dr. Friedman wanted me to have the best quality AND quantity of life so the process was to “de-bulk” it to get as much as he could. Finally, when they (once again) asked me about my pain scale, I was like “AHHH! It’s a TEN! It’s a TEN!” and they put me to sleep to finish the process. We were warned before the procedure of the risks wer were taking. I mean, come one, it’s messing with the one thing that controls your life, so the odds were not exactly in my favor to be up and running like I was. But, God is bigger. My family was warned I wouldn’t know who anyone was, I would need speech therapy, and a majority of other issues. But when I awoke from my deep sleep, I remember seeing my dad’s belt (that he’d had for like twenty years) and said, “Dad, this thing hurts. Get it off me (referring to my bandage).”

He broke down in tears and my healing process began. I had brain surgery. A big ol’ chunk of my brain was taken out. And I had no deficits. I came out back to my stubborn ol’ self. Haha! Now, I’m not going to lie and say it’s all fun and games. It is probably the worse, most horrifying pain I’ve ever gone through in my life.

My face looked like Sloth from The Goonies. Bruised and swollen where I was clamped down on my side. And I couldn’t really feel my body from the neck down for a little while. But it all came back and the pain subsided. And most importantly, the seizures never came back! Dr. Friedman was able to get 95% of the tumor and my seizures are now gone. It has been 8 months since that scary, awesome day on June 15th. I am back to work teaching my little ones and now have my Driver’s License after being seizure free for six months. I plan to start coming off my meds in March. God is good. And while the road to getting back to life is long and difficult, I remind myself, “Hey, if you can do brain surgery, you can do this!”.

I could actually go on and probably write a book about this journey, but as it still continues, I wouldn’t want to leave any good parts out. My main message for any person who faces or is facing this is: Trust God. Trust His hand that is guiding the surgeons. Trust his hand that is carrying you through this. You can allow yourself to be scared or to be down, but don’t dig a hole so deep that you cannot climb back out of. Pick yourself up and carry on. Life is worth living to it’s fullest. As Robert Frost said, “Two roads diverged in the woods and I, I took the one less traveled by. And that has made all the difference.”

Your journey is different. Your journey isn’t the easiest. But that will make you who you are. Doctors’ words can be discouraging as they always state the facts. But you must remember the truth. And that is: You are strong. You are resilient. You are an overcomer. Now get out there, and show others how it’s done. ☺

Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.