I had my latest brain MRI on Thursday. When I was feeling really ill, I looked forward to these days, really hoping we would find something that would give us a path forward to fixing something. Now? Not so much. Now I don’t really want to find anything. I am getting more and more symptoms, and they are weird and disturbing. And now I have a clearly abnormal test indicating there is a problem with my brainstem. But this knowledge now just makes me scared. I want to get the test done and over with and just know what’s going on. But mainly I want someone to tell me nothing is wrong even though I know that isn’t true. I am living life now, working, feeling free and looking forward to the future. I don’t want to go back to being sick. I feel like I am living in the stereotypical horror movie, when the clueless girl walks into the deserted farmhouse looking for her boyfriend, the suspenseful music is playing, nothing bad has actually happened yet. I am stuck in a loop, right there. No monster has devoured my head yet, but I have a sinking feeling something evil is in the house with me.
As soon as the MRI was done, I order a copy of the scan and take it home with me. I download a 1,000 different images of various slices of my brain and start scrolling through. I know by now this is a stupid move, but like the girl walking into the deserted farmhouse, even though you tell her she is an idiot for walking in that door, like an idiot I keep looking through the images. Is this something to be concerned about? Is that supposed to be there? I see everything and nothing and get really angry with myself for indulging this behavior.
Yesterday, I stare at my phone all day, trying to will my doctor to call me with the results. But she doesn’t call. I tell myself that must mean its good news – if the MRI was really bad, she would call right away. I tell myself that must mean its bad news – she wants to sit down with the neuroradiologist and go over the images before calling me. I tell myself to just shut the fuck up and stop thinking about it. But it is hard, especially as Friday comes and goes with no phone call, which means I will have to wait until at least Monday to get any news.
And this coming week, I am back at the NCI, where I see I am scheduled for labs, 3 CTS scans (chest, abdomen, pelvis) and now a PET scan. I haven’t even got over the scanxiety from this week and I am already worried about next week. They told me during my last visit I was only going to get CTs scans going forward. So why has the PET scan been ordered? Are we going to find anything? Is there a chance I have just developed seizures for no reason and can keep going on my happy way with my new medications? Someone please just tell me how this is going to end. After five years of plot twists I am getting really tired of this movie.
Today, I am going to try really hard to rewrite at least the next few days. I am going to go and stock up on fresh fruits and vegetables and get some exercise. Help out this piece of crap body as much as I can. I am going to an open house with my husband, keep on planning for our future. I will keep Nina Simone’s “Feeling Good” on a continuous loop until it replaces the continuous loop of the horror movie playing in my head. I may not succeed but I am going to try.