I've been asked several times what has been the "hardest" diagnosis to deal with was, so I'm going to take a step away from sharing my research on NF this week and share one of my personal stories =)
Regardless of the diagnosis, it is never easy being told you have some life long condition, whether it is a complication of a pre-existing illness (such as NF) or perhaps a new diagnosis in a person who was previously healthy. Personally, I have a lot of experience in being diagnosed with different conditions, so nothing really seems to come as a shock to me anymore. However, I will never forget the day that I was diagnosed with a brain tumor.
When I was 13 I had my first MRI after I had surgery to remove a plexiform neurofibroma from my back. My pediatrician decided that it would be a good idea for me to have an MRI of my brain to get a "baseline", since I had never had one before. Being only 13 years old, I was absolutely terrified of the idea of having an MRI, and even more frightened of what the scan could show. I knew that having a brain tumor was a possibility considering I had Neurofibromatosis, but that only added to the fear and ambiguity that I was feeling.
The scan itself wasn't too bad at all, I'm sure all of you living with NF have endured multiple scans before, or have watched loved ones go through them. While I was in the scanner all I could think about was having a brain tumor, and how my life could potentially be turned upside down if one showed up on my scan. At the time I didn't really understand that tumors could be benign, and that there was a more than likely chance that if a tumor did show up on the scan, that it wouldn't even be cancer.
The two week wait for my results were pure torture for me, and I can't even imagine what my parents were going through. I had scoured the internet reading about brain tumors (which I don't recommend doing) which only freaked myself out even more.
I remember going into my doctors office and sitting down on the examination table, hoping and praying that my scans came back clean. I remember my pediatrician opening the door to her office and looking at me with a blank look on her face. I could feel my pulse start to race as she sat down in front of me and pulled my scans up on the computer. She looked at me and said, "Courtney, you have a brain tumor." I. Was. Shocked.
I felt like the wind had literally been knocked out of my chest, or like 1,000.000 elephants decided to sit on me all at once, I couldn't breathe. It took me a moment to register what she was saying and it took everything in my power not to cry. I had to stay strong. The doctor fiddled around with my scan for a moment until she landed on an image with a white dot in the middle of a grey blob of tissue (which I assumed was my brain). She pointed at the screen and said, "...that's your tumor Courtney. Due to it's location it is highly unlikely that it would ever be able to be removed. I am going to send you to a pediatric neurosurgeon in Edmonton just to be safe, but we are going to hope that it doesn't grow."
It seems dramatic now, but when I was 13 being diagnosed with a brain tumor felt like a death sentence, I didn't want to "wait and see" what the scans would show months down the road. I wanted reassurance that my tumor wouldn't grow, or that it would never become cancerous. I wanted reassurance that I would be able to live a normal life that wasn't filled with neurosurgeon visits or MRI's and CT scans. Being diagnosed with a brain tumor felt like my childhood was being taken away. I had to deal with what most other 13 year olds would never have to deal with, let alone ever even think about.... how was that fair?
The fear and ambiguity of having a brain tumor has never really gone away. I always get extremely nervous anytime I go for an MRI, and anytime I go to the doctors for results. I am happy to announce however, that since the diagnosis of my brain tumor in 2007 it has shrunk to nearly HALF it's original size!!!!!!!!!!!!!!!!! WOOO HOOO! Doctor's are stumped to why this might be but hey, I'll take it!
I hope everyone has a wonderful week!