July 11th - Repeat MRI

July 18th
I had a repeat MRI scheduled for July 11th and follow up with the neurologist on the 18th. Karl could not come with me that day. I fully believed that I would be sent to the MS specialist and would start MS treatment. I was not afraid of this, it seemed that treatments for MS had progressed so much that I could manage it and not become too effected by it until maybe in old age.

That was not how the appointment went. My neurologist was amazing.  He had read the report from the radiologist and found it to be wishy-washy and just follow-uppy that he met with the radiologist and went over some of my history. The addendum to the MRI that they wrote together and that he read to me said that there were changes to the lesions and that "they" were looking less like MS and more like a tumor. These words washed over me and I really felt no emotion as he referred me to a neuro-surgeon at Barrows for a consult. He increased clonazepam to 1mg per night and gave me a trial pack of Lamictal XR to control what are now described as nocturnal seizures.

26th July
Met with neurosurgeon today and he went through scans etc.  He tells me that I have a primary glioma in the speach / throat area of the brain. (brain tumor). The area is too large to remove surgically without damaging me more so surgery will be a last resort.Next week I will have a functional MRI which is where they look at my brain while I am doing things like swallowing, wiggling my fingers, thinking etc so that they can tell if the tumor is actually in the speach / throat area or next to it causing pressure. i.e. what areas to avoid when they suck out the tissue for biopsy.

After that I have a brain biopsy to determine what type of tumor it is and if it would respond to chemotherapy. How rapidly it is growing etc. Will continue anti seizure medication to hopefully control the seizures.

I walked out of his office with tears running down my face.  They did not stop until we picked up the children.

The good news is it appears to be slow growing. I am trying to remain positive for Karl and the children but right now I am in shock. Will know more information about prognosis after the biopsy.

Cannot stop thinking and googling.  All of the questions that that I should have asked of course I did not. Will my head be shaved? Will I die this year? The only question I asked was "If this is somehow related to chromosomes, is it genetic and will my children get it?"It all hit me suddenly one afternoon this week and I started to cry uncontrollably.  I have heard the expression "keening sound of grief" but never really knew what it sounded like. I know now. I cried not for me but for my two young children. Too young to lose their Mummy.  I do not want to die.