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.
