First of all I am extremely sorry to scare you guys like that. But it was like my life crashed..once again.
Every appointment is a fresh death sentence for me. Its been 3.5 years and I haven’t heard or given anyone a good news.
I have seen 20+ doctors and they all agreed to at least 1 thing..its autoimmune..and my treatment which was very harsh btw was at least on the right path.
Now I am left with a residual mass (that wasn’t growing or harming) that needed surgery that was causing disfigurement.
I worked so hard to gather myself and I was really close to the finish line. I had everything planned. Just few months. This surgery and then I will be back home with dad and family.
Friends were congratulating me. I was working hard to get back to my normal form. Then I could go work and at least have some hope for future.
I started dreaming.
Then today’s appointment..
I had an MRI few days back. From a new place recommended by this new surgeon (only surgeon available who can perform this surgery).
And today we had to discuss the report and the plan.
Turns out my dingosis had been wrong all along. I might not even have autoimmune. It might not be in the region they kept on treating.
Now let me explain that mass/growth. I might show you guys MRI image too but I dont have cd player in my laptop right now so I will explain. We have optic nerve behind our eyeball and it extends to a small sort of opening of our brain.
In my case that growth is surrounding option nerve in that whole passage. fine. I knew it. It was a just a growth that has cooled down after years of treatment.
But today the doctor tells me its a benign tumor that has reach that small opening already. Maybe it has already reached brain.
I was staring at the screen blank and pissed thinking..this better be a joke…this is not happening..
A whole team was present there now I understand why. I am a case doctors fight over. Its rare.
The surgery stays the same. But the fact that this growth actually grows or keeps on growing…this crippled me.
My entire world crashed.
All I could think was ..my dad..he doesn’t deserve this. He is a great father and a great man who has been tested enough already. How is he going to deal with it. For him his rest of the life might be handling a sick grown up daughter.
What am I going to do later. I dont have one reason to live.
In fact I am going to be a burden on whoever will be kind to me and the rest will probably stop acknowledging my existence.
A useless sick person with an undiagnosed diseased that needs monitoring all the time.
This is all what happened.
I was scared lost mad and dont know what else. I posted that. Then I realized u all are worried. I am really sorry.
I called sam and I couldn’t talk. Partly because I had been crying so much I just couldnt speak.
Then I dont know if I passed out or slept I was gone for sometime that I know.
I have no idea what im going to do now. Cant think straight.
Edit: my next appointment is with a neurosurgeon..dont even know how to react to it.