Be With Me
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About this ebook
Life can be tough! Gloria thought she had the perfect life-she had a great family and job, and was very happy. Just as her son was about to graduate from high school, she was diagnosed with a noncancerous brain tumor. Her life as she knew it came to a screeching halt. She had suffered with headaches and migraines since her childhood but never expected this diagnosis. After her diagnosis, she suffered a mental breakdown. This breakdown was harder to recover from than the physical challenges she had to overcome after surgery. A year after surgery, she had a major skull infection and the tumor started to regrow. This book is her story of fighting to regain what she had lost. Her hope is that her story can help others going through a hard time in their life.
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Be With Me - Gloria Nailor
Be With Me
The Story of an Acoustic Neuroma Brain Tumor
Gloria Nailor
ISBN 978-1-64079-297-5 (Paperback)
ISBN 978-1-63525-861-5 (Digital)
Copyright © 2017 by Gloria Nailor
All rights reserved. No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods without the prior written permission of the publisher. For permission requests, solicit the publisher via the address below.
Christian Faith Publishing, Inc.
296 Chestnut Street
Meadville, PA 16335
www.christianfaithpublishing.com
Printed in the United States of America
I dedicate this book to my parents, my sisters and especially Shawn and Joey. I thank God for blessing me with their support and love.
When we don’t fit in, we stand out. Maybe God has a plan for all our imperfections.
–Jessica Lippe
Chapter 1
The Shocking News
Sometimes I scroll down my Facebook page and am saddened by many of the posts I see. There are sick children with horrible illnesses, friends who have suffered deaths of loved ones, terrible news updates from around the world, and so much sadness. Then there are other posts that make me smile and give me hope. This book is about a very difficult time my family and I went through after I was diagnosed with a noncancerous brain tumor called an acoustic neuroma. Hopefully my story makes you smile and gives you hope.
Here is my story:
I remember having headaches in kindergarten. I once missed being in a school play because of a horrible headache when I was five or six years old. It was on a day that new carpeting was being put down in our home. I remember lying on the couch watching them cut the carpet and my head was hurting. I think the teacher thought I just didn’t want to be in the play, but my parents believed that I had a bad headache and did not feel well. I had headaches quite frequently in elementary school. When I went to junior high school, they changed; they became more intense and were diagnosed as migraines. When a migraine started, I would only see half of what was in my field of vision, and I would see what I call squiggly lines. I would not have a headache with these initial symptoms, but as they went away, I would have horrible pain that was mostly in my forehead. The pain would sometimes radiate to other parts of my head. I would have awful stomach pains and nausea too.
One of my migraines was so horrific that it caused me to pass out while in school, and I woke up in an intensive care unit. I had been unconscious for several hours. The school principal thought I had taken some type of drug and brought this upon myself. I remember my parents driving me to many doctor’s appointments after that, trying to find out what was wrong with me. In the end, they diagnosed me with migraines, no other illness or reason was found.
Fast-forward to the age of forty-three. I had been having some odd symptoms for several months. When I would blow-dry my hair, I felt like my hearing was different somehow in my right ear; the blow-dryer sounded odd. I sometimes felt a tiny twinge in my right eye. My right pupil looked much larger than the left pupil. When my husband and I walked our dog up our road at night, I could not walk in a straight line; I would meander all over the road. My migraines were increasing in intensity. In past years, I would have about four to six migraines per year. I would take some over-the-counter pain medicines or Tylenol with codeine and sleep in a dark room, and they would eventually go away. My migraines had become weekly for the past few months. I decided I should visit my doctor, and he ordered an MRI (magnetic resonance imaging).
On April 21, 2011, my life as I knew it was changed. The life of my family did also. I was at work, and my doctor called to tell me that the MRI showed quite a large tumor in my head. I was told it was possibly a tumor called an acoustic neuroma because of where it was located; he thought this because it was located on one of my cranial nerves. It was pressing against my brain stem and was causing my symptoms. It most likely had been growing for twenty to thirty years, and until it became larger, I did not have any symptoms. I was told that migraines and headaches are usually not associated with this type of tumor, but I don’t believe that.
I remember many CAT scans as a teen, but I do not remember having an MRI. Perhaps it could have been diagnosed when I was a teen if I had one, I will never know. I had a CAT scan three years prior, and nothing was found then either. I am allergic to CAT scan dye though, and it was done without using contrast; it might have shown up with contrast being used.
My doctor asked if I wanted to meet with him, and I declined. He was willing to wait for my husband and I to meet with him and discuss things further. All I wanted to do was research this tumor quickly on the Internet and go home and hug my husband and my son. I am a nurse, and I thought I knew all I needed to know; I would research more online after the shock had worn off. I look back now and realize this was a very big mistake; I should have met that day with my doctor. He told me he would refer me to a neurosurgeon in a nearby university medical center and I might possibly need brain surgery.
I hung up the phone and called my husband, Shawn. I remember trying to sound calm to him but being so frightened. I told him that I could possibly have an acoustic neuroma and asked if he could research it online and we could talk about it when I came home. He told me he loved me when he hung up. We always end our phone calls this way, but that day, it struck me how blessed I was to have him. It was about four thirty when my doctor called. I work in a pediatric office, and we were just about to close for the day.
I started to cry when I hung up from the phone call with my husband. One of our secretaries walked by and gave me a big hug when I told her what was going on. Earlier that week, I had given her a woman’s daily devotional book to look at that I use. She was returning it to me. She pointed at the book and said, God will help get you through this.
I knew she was right. I knew my family would help also. I then called my parents. My dad answered the phone, and I gave him a very short version of what was going on. I asked him to call my two sisters and told him that I would call him later in the evening.
I spent several minutes researching online what an acoustic neuroma was. I found a very informative site organized by the Acoustic Neuroma Association. The tumor I possibly had was a rare tumor and was usually benign. Even though it was most likely noncancerous, I was afraid. I had signed a consent with my doctor several months before, and it allowed me to look into my medical record whenever I wanted. I was able to access my health record and pulled up the results of my MRI and was able to see the tumor. It seemed huge to me; it measured almost three centimeters in diameter. I was very fortunate to be able to do this; I may not have believed I had a tumor if I was not able to see it myself.
I grabbed my purse and headed for home. How was I going to tell my seventeen-year-old son I had a brain tumor? He was in high school and was graduating in just a few months. He was supposed to be enjoying his senior year not worrying about me. I cried the whole way home and kept asking God, Why me?
I managed not to cry as I told my son, Joey, about the tumor. But he loves me, and he cried. We told him what little we knew and that outcomes were usually very positive. The rest of that night is a blur.
I happened to have the next day off from work. I did not sleep well the night before and cried a lot that day. I managed to keep my tears from Shawn and Joey, and I am unsure why I felt I needed to do that. Maybe I was afraid the tears would not stop coming.
One of my hobbies is tending bees. A fellow beekeeper and friend, Bob, came over to visit; and we checked on my bees to see how winter treated them. I had lost two out of five hives during this winter. More bad news.
I decided the only way to deal with this was to be positive and not let fear grip me. I put on a positive front. But that was all it was, a front. I was petrified I would die and never see my family again.
That weekend was Easter. We planned on spending it with Shawn’s family. Shawn and I both woke up very early on Saturday. We cried. We held each other and cried. It was so hard to fathom, and it was frightening. It was the only time I saw Shawn cry because of my tumor. I spent that evening with my younger sister, Joli, and her children. She lives two hours from my home and not far from Shawn’s parents. I remember walking through the streets of Rutland, Vermont, with my sister and niece. I was so happy to see them and relaxed a bit. I had my camera and needed to take many pictures of us together.
I couldn’t sleep that night at my in-laws. I didn’t want to wake anyone up in the house, so I grabbed a pen and paper and headed into the bathroom. I spent over an hour writing to Shawn and Joey, writing letters that told them how much I loved them and how much they meant to me. Letters that only Shawn would read down the road.
As I have gotten older, I have come up with a theory. I call it the stadium theory. I imagine that when we die and enter the pearly gates, the angels will show us a picture of a football stadium. In that stadium are all of the people we have helped in some positive way