What A Title Cannot Describe

As I stumbled walking heel to toe I remember Bethany joking with the Nurse Practitioner that my breakfast orange juice must have been a little old and fermented impairing my ability to perform such a simple task, if only it had been true. Even after that section of my sports physical it was still unknown that there was anything wrong with me, the NP may have found my slight lack of coordination a little odd but not enough to keep her from putting her signature of approval at the bottom of the paper allowing me to play basketball. It wasn’t until she was about to leave the appointment and checked that we were all set to go that my Mom piped in about some bad headaches I had been having. We quickly discussed medication I could try for what she assumed to be an average migraine and she wrote an order for me to get a CT scan of my brain, just to rule anything out. As we left the office my Mom struggled to convince me to schedule the scan, getting a little upset when I told her I didn’t care if I died, I just really didn’t want to get it done. As we walked down the hall to the radiology center I agreed I would go if she made the appointment but I was not going to go in with her to schedule it. So on the Friday afternoon she scheduled my scan for Monday morning.

I felt the chilling contrast run through my veins, giving a metallic taste to my tongue. I was ready to be done and did not want to ever have another scan of any kind. The radiologist tech double checked with the radiologist to make sure there were no more scans needed (little did I know at the time she was talking with the radiologist much longer than usual) and she sent me on my way. My Dad received a phone call from the doctor’s office a few hours later telling us we needed to come into the office to discuss the test results. With my almost 16 year old mind that NOTHING got past, all seemed normal to me and I skipped to the office in my lucky cookie monster socks. As a walked up to the counter they turned down the co-pay and told me to take a seat. I was quickly taken back to a room and that’s when the NP came in with a copy of MY FIRST BRAIN BOOK and told me I had a small tumor in the right portion of my cerebellum. They had already set up an appointment for me to see a Neurosurgeon on Wednesday and they once again sent me on my way. As I walked out of the office I looked no one in the eye and cringed at the sight of happy children playing in the lobby, didn’t they know of the horrifying news I had just been given.

Tears soaked my pillowcase as Bethany sat beside me, she didn’t know what was going on and I couldn’t seem to let the words to tell her pass through my lips. All I could tell her was of my determination to attend Girls Camp the next week. After the initial moments of sadness and anger I joined my family in their discussion of what would become of the next few days. We used every stupid brain joke in existence to delay the tears because if we were not laughing there was salt water coming down our cheeks; there was no way to rid them except through our eyes. I laid in bed that night with my best friend holding my hand while I listened to the faint sound of tears and the constant beat of our fists hitting the bed in an anxious trimmer. When Bethany had gone to sleep I arose and went to the living room to sit with my Mom as she tried to comfort me. My Dad and brother gave me a Priesthood Blessing at some point leading up to my appointment with the neurosurgeon and as my Dad relayed the words of my Heavenly Father I felt the drops of his own tears and it was one of the few times I had ever seen my Dad cry.

There were no other patients left in the waiting room, I had been added to the end of Dr. Manwaring’s busy schedule, an employee even inquired of how I had got an appointment because he was scheduling so far out. When he got into the room he tested my coordination, it was frustrating when I fell to the side when asked to walk backwards with my eyes closed and touched my cheek when I was aiming for my nose. Still he said the coordination I still had was amazing, although I would not learn how miraculous it was for another 4 years. After looking at the CT films he assured me he knew what to do but would not agree with me that I was going to go to Girls Camp the following week, in fact I cannot recall ever being told I would be alive the next week. I was sent downstairs to get an MRI which would provide him with a clearer picture of what was going on in my brain. At that time I was still convinced I would go home and be traveling to Alpine in the next couple days. He called my parents and told them I would need to get a PET scan in the morning and I had surgery scheduled on Friday. He also strongly advised them to keep me in close proximity to the hospital.

I slept pretty well that night, by this time I had become numb emotionally and the pain in my head was a lot to bear when I was awake. In the morning I ate a pancake with a glass of fresh orange juice and we headed to get my PET scan, before I even went in for the scan the surgeon had called and informed us he wanted to move the surgery up to that day if it was ok with us, he felt more comfortable with Thursday’s team and my life was apparently on a short timeline. He instructed us to head to the admittance desk for surgery as soon as I was done with the scan and he would meet us there. There we signed papers and Dr. Manwaring gave a fast paced explanation of what was occurring. The tumor was cutting off the circulation of Cerebral Spinal Fluid through my fourth ventricle, which was the cause of my intense headache. He only briefly mentioned the option of not getting the surgery done which would guarantee my life would come to an end pretty quickly, and there was not really any time to get a second opinion, luckily my parents and I had full faith in his skills and Heavenly Father’s direction of him. As I was being prepped for surgery he continued to talk with my parents. I was given a gown to change in and a teddy bear to hold on to for comfort.

“Am I ready to go in for surgery yet?” I asked. I was then informed it was 6 hours later than the last time I remembered and I was now lying in a hospital room, tumor free. Versed was the cause of my confusion, making me forget what happened from the moment it was inserted and the following day would be kind of patchy in what was going on as it continued to wear off. I called Bethany in the morning although most of what I told her made no sense because I had just been given another dose of Morphine. Shelby would bring her and Morgan up to see me that night. An activities specialist came and brought me a basketball hoop to play with and supposedly my Aunt and Grandma visited however I only knew that from gift they left. When Bethany walked into the ICU my nurse was pleased because she was all I would talk about and allowed them to stay for a while even though it was past visiting hours, although Bethany could not sleep at the hospital with me.

I NEED Harry Potter, I told my Dad. Even if I could not lift my head up to read, the sixth book was being released on Saturday and I was not going to get behind and have the plot ruined by my friends. Saturday morning before they returned to the hospital, my Dad and sisters stopped by a store to pick it up for me. I made Bethany read the first couple chapters to me, and then I was able to sit up and read it myself. When I reread the book later on I realized I completely missed the first half of the book because I wasn’t conscious enough to absorb what was being said/read and they book made a lot more sense the second time around. My surgeon walked in on me reading the book and was impressed with all of my progression. He offered to let me go home Saturday night but we were both more comfortable with me staying another night. Although I was able to read I still had difficulty finding my mouth to drink water and sometimes I had more food on me when I ate than actually got in my stomach.

Sunday morning came and it was time for check out, if I were to stay at the hospital longer it would require them to move me out of ICU to another room and my surgeon did not feel it was necessary. Someone drove the car up to the hospital door and got it cooled down because one of the few post-op instructions was how imperative it would be that I DID NOT sweat. If sweat were to get through the incision, it could cause an infection in my brain and there are very few stories where an infection in the brain turns out well. We had the trip down to Sierra Vista to conquer, and looking back I’m not sure how I made it. In surgery they cut my neck muscles which are some of the stronger muscles in your body that, I have learned most people overlook. I could not move my neck very much and it took quite a bit of effort to hold it up while I was sitting. We had to stop in Tucson and get something for me to eat and sit still for a while. I had not realized how much you move in a car until I had this experience.

When I got home I had several wonderful visitors come and check up on me, but mostly I was happy to be back with Bethany. She would leave without me for Girl’s Camp the following morning and it was really hard. Until I went up to Phoenix for surgery we had never been apart for more than 24 hours, and Girls Camp was also somewhere I really wanted to go. My parents agreed to take me up on Thursday for my birthday but I had to sleep somewhere else that had a really bed and a reliable way to keep me cool. I thought it was a great idea at the time but as I have looked back I must have been rather obnoxiously persistent for them to agree because if the 3 hour trip from Phoenix was hard what would a 6 hour trip to Alpine be like.

After surgery I jumped back into real life, but not without difficulty. Every year I helped out with Buena’s registration, but this year I could not perform my usual job in helping get people’s textbooks for them because I wasn’t strong enough to lift them so I had to sit at the refreshment table and stir the lemonade. I had to get an extra set of textbooks myself so I didn’t have to carry them back and forth from home, this required me to face the reality of what happened and ask someone I did not know for help. When it came time to start training for Basketball a few weeks into school I simply did not have the strength, even going just once or twice and watching for most of it caused me to be so tired I had to stay home from school the following day. It was also the first year we started powderpuff football for a homecoming week activity and can you imagine, my parents wouldn’t let me play. My competitive self had to stay on the sidelines. I still had some difficulties reading and that year I was in an AP English class that read A LOT of books. I really wanted to be able to act like I had the year before because from what everyone could see nothing had happened. It’s wasn’t like a broken leg where everyone sees your cast and crutches so they give you a break. I had to show some people my scar to prove that I actually had something wrong and wasn’t making up a story.

I believe the only reason I am at BYU studying neuroscience is because of my brain tumor. I do not think anyone besides Dr. Manwaring or probably an apostle could have told me I should go to BYU and I would have listened. Those few days turned my life around and yet still 5 years later in an effort to feel normal I still try to convince myself sometimes that the tumor once in my head had very little effect on me, though the more I try to rationalize the thought I come to realize how great an impact it had. How could a group of mutated astrocytes in my head change my life, if I was only aware of them for a few days before they were removed and it left a very minute amount of permanent physical changes? Sure my reading capabilities dropped from a higher level to that of a slightly above average student and as a girl I was no longer allowed to play football, hockey or any other manly full contact sports, but I continued to gain a valuable education, being near the top of my class and still had many athletic activities I could enjoy; to many people that is nothing to complain about. I may have had a rather unproductive summer caused by my lack of ambition due to a severe, constant headache but I’m sure many people look back to at least one summer as an adolescent and can see very little that came from the time. So really all I can see are positives that come out of the situation. I feel as though my testimony in God the Father, his son Jesus Christ and my divine plan has been increased through my brush with death and my joy for living has bloomed, but the tumor or brain surgery are not the foundations for this perspective on life. In every instance or problem in which I look toward my experience with a brain tumor as the cause, another person could have run into a similar problem or change in life without having gone through what I have. This is the statement that allows me to feel normal, but then I realize that my struggles and gains in life did not come from the same thing as others, they came through a brain tumor. My life was changed because I had a brain tumor and there is no way around it. Though the brain tumor has changed my life, I have learned it is up to me to decide the changes it causes.

On the 14th it will be the 5th anniversary of when I had the tumor removed, or as I like to call it Celebration of Alison’s Life Day. My account of what happened is most definitely different from what another member of my family would tell you what happened but then again I was on drugs for half of it and the other half my head hurt so bad I would have rather been dead. What ever the case may be this is what I remember.