The Search is on for a Neurologist.

Looking back I think I must have been in shock because there is not a lot more that I remember about that day. Actually, I think I have blocked a lot of things out because they were so painful. I don't even remember telling my sons, parents or sisters about the tumor.

I vaguely remember talking to my supervisor at work and also telling some close friends. I had decided that I better tell my staff before they started to hear rumors and possibly things that were untrue. When it came to hiding my situation or coming forward, I felt coming forward and being honest was the right way.  I knew this would affect my co-workers and I wanted them to feel they could come to me and talk about it, I just didn't want people to be talking about it and spreading untruths because they did not know the truth. Looking back it was the right thing.  I was able to answer peoples questions. It made me feel strong and in charge of my situation. My co-workers gave me strength, love and prayers, all of which I really needed at that time.

We begun looking online for more information about Pituitary Tumors. I know what you're thinking, we heard it from so many people.  Don't go on the internet, there are only horror stories online, etc, etc. We did initially see some horrible things about how the procedure would be done. One medical page we saw said that they would have to remove my forehead to get to the tumor or possible have to go through the base of my skull. These options both scared us so much.  I was worried about a possible facial deformity if they had to remove my forehead. But the more we researched the better the news got. We saw that there was a new procedure where the surgeon would actually just go through your nose. We saw that there was a surgeon at Barrow Neurological Institute that specialized in the procedure and had done it over 2000 times and that he even taught it to other surgeons. This gave us a bit of hope.   As we researched more we saw stories of immediate recover after surgery.We read the stories of people who had the same tumor as I did and they were fine after the surgery. The stories we read gave us encouragement, hope and confidence that I was going to be just fine. We began to relax a little and even couldn't wait for it all to be over so that I could feel good again.

I kept checking with my Doctor because I had not heard from the Neurologist she had contacted. I even called the his office to let tell them my Doctor had faxed info and called the Neurologist and that I needed an appointment. They told me they would look for the info and call me to schedule an appointment, they never did. So I finally started to look for a new Neurologist on my own.

A Neurology office was referred by a friend and made an appointment. The first appointment went pretty good. They gave me some migraine medication to try for my headaches and sent my info to the Brain Tumor Board at Barrow Neurological Institute for review.  I waited for news and my follow up appointment.  At my next appointment John was with me. When the Neurologist came to the room to see us he was talking about a medications he wanted me to take since neither of the previous medications helped my headaches. One was a new medication for the headaches.  The other medication sounded like pure torture and it might shrink the tumor.  He said it would take up to a year to determine if the medication was working. The major side effect was passing out and it was a side effect that affected every user. I would have to take a dose and immediately lay down so I wouldn't pass out and hurt myself.  We would start with a small dose before bedtime and would eventually increase the dosage and the amount of times I had to take it to 6 times a day.  So basically I would be stuck in my bed and unable to work or really do anything. I didn't understand why we were talking about this horrible medication. When I asked, his response was "This is how we treat these things." and he said it in a tone that implied he was not happy that I was questioning him about my treatment. When I asked "Why don't we just remove it?" his response was unbelievable.  He had his back turned to us when I asked that question, he spun around so fast it startled me and he said "NO surgeon will ever touch you, THIS is how we treat these things."  John and I sat there in total disbelief that he had said that to us. We were shocked and pissed. I was thinking great, is it going to be just as hard to find a Neurologist that will listen to me as it was to find a Doctor. Needless to say I never filled those prescription and we never went back to see him. I immediately continued to search for a Neurologist that would see me.

Trying to find a Neurologist that would take me on as a patient was hard.  I was told by several that they no longer saw patients with Brain Tumors now that Barrow's was in town. It took me a while to find a Neurologist that would take me, but I found one. I got an appointment set, but it was nearly a month away. So we waited.

August 23, 2010: The day that changed my life forever. Part 2

I sat in the exam room confused and shocked. I don't think I said anything. The Doctor said that she had called  the Neurologist she had sent me to for the headaches to get me an appointment right away and  had also faxed him the MRI report. She explained the Tumor had been the cause of my years of unexplained medical issues.  It was because the Tumor was destroying my Pituitary Glad. She was going through the papers she had printed from the internet and was reading and circling information on the pages. She was showing me pictures of a brain and pointing out where the tumor was and telling me about the Pituitary Gland. And I just sat there, trying to listen to what she was saying, trying to understand, but all I could think of was Jordan and Tanner.

Honestly, everything was such a blur.  I remember being in my car after the appointment. I think that is when it finally hit me and I began to cry. I had never been so scared in my life. I didn't know what to do, so I just sat there. I must have called back to my office to tell them I wouldn't be back, but I don't remember making the call. I made the 40 minute trip home and I don't remember a second of the drive. I must have been set on autopilot.

The only other thing I remember from that day is standing in my bedroom, looking at John.  I must have looked a mess because I remember the look on his face. Through my tears I told him I have a Brain Tumor.  I remember the shocked look on his face and I could tell he was trying to be strong as I stood there and falling apart. The next thing that happened will forever be ingrained in my memory.  John took my hands and said " I love you. WE will get through this. I need you to be my wife."

August 23, 2010: The day that changed my life forever. Part 1

I'd had some medical concerns for years, but it seemed no Doctor could figure out why I just didn't "feel good". They would always run the standard lab work, which in the beginning always came back normal, or normal enough I guess. My random symptoms would come and go, sometimes I would feel great and other times I just didn't feel right.  I wasn't sure just exactly how to describe how I felt. I just knew something was wrong. About a year prior, on the hunt for yet another Doctor who would listen to me and find out what was wrong, I finally found her, Wendi Nielson. I explained to her my years worth of medical history and how I just knew something was wrong and no Doctor ever really listened. In fact I had started to believe that I might just be nuts.  Maybe there was nothing wrong with me, maybe I was crazy. She listened to my every word, took down notes and looked into my eyes and said "I promise we will find out what is wrong." I was hopeful, but didn't want to get my hopes up to high only to be let down again. She did like all the others and ordered blood work, this time was different, she had ordered so many more test than the others. A couple weeks went by waiting for the results and I went back to see her. She spoke with me about additional tests. She had found that my hormonal levels were out of whack. Maybe all of this was hormonal, I was happy for the news, I thought "this is it". We can fix this, I will be fine. I started taking medication to level out my hormones. I took them for about 2 months and went back for more labs to check on my hormonal levels. Only to be surprised when the results came back even more messed up than before. There were indicators of other diseases in my lab work that weren't there before. We were confused by the results, so more tests were ordered. When the results came back, there were just more questions. She did a lot of research trying to figure out what was going on. I started to give up again thinking she would brush me off like the other  Doctors had.

And that's when the headaches started. I figured there were from stress.  I was working as the Vice President of a Community Management Company.  Long days, something always blowing up, a boss from Hell, etc, etc. Basically the job was hard work, don't get me wrong I loved it. I had worked my way up to VP in a year and a half and loved what I did for a living.  I was raising a family. I was happy with my life. But my life was very stressful and I thought it just had to be the reason I was getting headaches.

As the months went on and the headaches became more frequent and more intense I spoke with my Doctor. We did more blood work and she ordered a CT scan. When the CT Scan results came back they showed I have a severe sinus infection. I was put on strong antibiotics for the infection. I had sort of hoped that it would show something so I would have an answer, but also hoped it showed nothing because it scared me to think they would find a problem in my head. She wasn't satisfied with the results so she asked if I wanted an MRI, and I did.

A few days after the MRI I got the phone call that changed my life. I was sitting at my desk working when my cell phone rang. It was the nurse from my Doctors office. The tone of her voice instantly startled me, but her words stopped my heart "We have your MRI results. The Doctor needs to see you right away." It seemed like it took forever for those words to set in. I told her I would be on my way as soon as I could. So many things were flashing in my head.  I sat at my desk in stunned silence.

When I arrived at the office and said the Doctor asked me to come in right away. The girls at the desk must have already heard the news, they were quieter than usual. As soon as I sat down in the waiting area the nurse called me back. She was usually joking and chatty, this time she was solemn and too quiet. She brought me to the exam room and let me know the Doctor would be right in. I was absolutely scared shitless. So many things were running through my head. My kids, my family, my life, what the hell is going on. The doctor silently entered the room.  I was sitting in a chair and she pulled a chair right up to me. We sat knee to knee and she had a stack of papers along with my chart. Her first question was "Do you have anyone here with you?", that question was like a punch in the gut.  I was thinking oh my god, is it such bad news that someone should be here with me when I hear it? I was alone and her question had just pointed that out to me. She began to tell me that the MRI results had come back. She told me that she wasn't an expert in what they had found and that she had pulled information from the internet and also had some websites for me to look at and then she began to read the MRI results. " Within the sella turcica is a smoothly contoured mass.....This mass occupies the anterior three quarters of the sella tucica.....The only definable pituitary remains within the posterior  aspect of the sella.....Minimal remaining Pituitary gland..."  I must have been staring at her with unbelief because the next thing she tells me is "It means you have a Brain Tumor."

I guess it's just the story of my life.

When I feel like I am on top of the world and my life is going they way I want it, everything just falls apart. This isn't new to me it seems as if it's been going on my whole life.  Please don't get me wrong.  This isn't a complaint, just a matter of fact and at the age of 38 I'm used to it.  I've always adapted and been able to fight my way back to the top again, even more proud of myself then the last time. This time is just way harder than ever before.

I've been encouraged by a couple of medical professionals, friends from my support group and my family to document my journey. Over the past year I have written a few things here and there and I have put a lot of thought into whether I want to share my story or not.

Recently it came to my attention that most of my friends and some of my family really have no idea what is going with my Tumor, the damage to my brain and the struggles I am facing on my path to my recovery. I think it's been like the telephone game we played when we were kids, by the time the info gets down the line, it's completely changed. So this in combination with me needing to get all the thoughts running around in my head down on paper and the therapy I hope to get from writing are the reasons for this blog.

So as I sit here today, it's been just over a year since I found out about my Brain Tumor, 7 months since the surgery that removed most of the tumor and a month since I found out about the damage the tumor has done to my brain.  The damage to my brain was confirmed and it's not easy to accept. We knew there were things that weren't right but never wanted to hear that.

This Blog will be difficult for me emotionally, from my Aphasia and the brain damage from the tumor. So a special thanks to my husband John who will be proof reading for me. (love you honey xo)