So yesterday was a roller coaster emotionally. I woke up excited about seeing the neurosurgeon, which in itself is a strange feeling. I never would have thought I'd be excited to see a surgeon who would potentially cut open my spinal cord. I expected answers and a plan and that is what I was so excited about. I thought finally, no more waiting, this is an expert who will be able to help me.
My regular doctor very obviously didn't understand what was going on with my spine, and I felt like he was trying to protect me from the truth by only telling me bits of information. Thanks to getting all of my records directly from the hospital that had done my MRIs and the invaluable Google, I had accessed the seriousness of the situation and the potential next steps. Likely a biopsy, hopefully just a needle biopsy, a spinal tap to look for cancer cells in my spinal fluid, more MRIs.
Eric and I slightly overshot the entrance to the neurosurgeon's office and ended up parking in the next lot over. We had a nice little walk to office door. We held hands and had light banter as I limped along. The doctor called us back after a short wait in the waiting room. He took us down the hall to a little room with two chairs against the wall and another behind a rolling desk with his giant MacBook on it. We shook hands and sat down uncomfortably in the chairs against the wall. He proceeded to type all of the info from my printed patient form into his computer. There was awkward silence as he typed. Every now and then asking a question about the answers on the form. Eric and I messed with the spine models on the table between us to pass the time. Finally he was done, had my MRIs loaded and was ready to begin. After a few funny tests of my reflexes and feeling in my legs he rolled back to his computer to look at my films. As much as my family doc had tried to protect me and keep me from worrying, this guy hid nothing. We watched his expressions in silence as he read my MRI. His hmms and huhs. He looked up and proceeded to tell us things that you don't want to hear from the top neurosurgeon in your state about your condition.
He said he'd never seen anything like it. It wasn't just a sphyrinx like he had thought from previous emails. It was throughout my spinal cord in all these uncommunicative cysts and masses. He said in places the tumor completely filled my spinal cord. That there was no normal tissue left. He had never seen anything like it and assured us no one had. I'm not sure why that last part was necessary. I realized we were not going to get answers, just more questions.With each new test I had had, we only got worse news and more questions. He said I shouldn't be able to walk.
I asked him about second opinions and pressed him to help us find someone who might have answers, and I certainly wasn't about to let this man who had just gotten done telling us how baffled he was, biopsy it as he wanted to. (The needle biopsy was out of the question) He called a neurosurgeon friend and left a message so we could get another opinion. It clarified for me that we would have to seek help out of state. It was time for the big players in the medical world to get involved. I knew from my previous research(googling :) who to contact and was determined to get in touch with him.
As we walked back to the car, a little stunned, with out the answers we had so desperately wanted, we joked about our new list of things you don't want your neurosurgeon to say. What else could we do? My gut reaction was "F this"! I don't want it. It won't run me, or scare me. It stirred the fight in me, and that isn't a bad thing.
I could tell my precious husband was a bit stunned, and even though I had no appetite we decided to go eat somewhere before going home to face our kids. I also really wanted a drink. I hadn't been drinking anything because of the pain meds, but it was one of those times when the idea of having a drink out with my husband outweighed the stern warning of the pharmacist. I ordered a Long Island ice tea. I knew I'd only let myself have one so I wanted to make it count. We talked and I shared my thoughts about the appointment and what I felt we needed to do next with Eric. He agreed and I started tracking down Dr. Jallo's email address.
On the long drive back home, I called my parents. I shared all the doctor had said to us, and they were the same rocks of faith they always are. I called each of my brothers and shared with them, they too stood firm in faith. I had someone ask me today if this has changed my view of God. I said no, and I have been thinking about that ever since. I still have no doubt of God's goodness. I don't think that he wants me to be in pain or to have tumors in my spinal cord, but He did let it happen. I don't know why, and I don't need to. Time and time again He has used the hard situations we have gone through for our good. We always look back and can see God in it. I don't know why me? And it doesn't matter. Better me than someone that doesn't know God as well. Than someone without the amazing husband and family I have. I don't know what will happen, but I know that no matter what happens in the long run, God will be glorified. I want God to use me, and while this isn't the way I was hoping he'd do it, I accept it and I'm trying to turn to God.
We did hear back from Dr. Jallo yesterday, and it was the first good news we have had. He has seen tumors like mine before and they are normally benign! I'm sending all my films to him so he can review them.
I can trust that God is good no matter what news I get and no matter what way he uses me for his glory. After being told that I shouldn't be able to walk, my limp doesn't seem so bad anymore either. Perspective is a good thing, and I know that I'll have more of that on the other side of this battle. Today at least when people ask "how are you?" I can say with all honesty that I'm doing well.
