Don't forget today.

Ok, new news first:
OHSU called me yesterday. They have my paperwork and the go ahead from insurance. This has taken FOREVER so as much as I am not looking forward to the SPECT scan, I am glad it's getting moving. This is not the surgery, just ANOTHER test.
I told the family. They are preparing in their own ways. I will freeze all of the crockpot meals I can in preparation. Ethan will need to get himself up and to the MAX every morning. I will likely be in the hospital for about 5 days, attached to the wall, waiting to have a seizure so I can be shot up with radioactive materials. So I can come home.
Good times.

Spect Scan images. This is not my brain. I will ask if I can have copies of my images. Because they are mine and I want them. And I will frame them and hang them on the wall. Because I can.


Some derby badasses made us a GoFundMe.
Operation Wrecktemporal Lobe

 I am still speechless. I have had friends, I have had close friends. I have never had friends who were SO on my side. I feel like I have a constant cheering section. I also feel unworthy of the attention. Who the hell am I to have such amazing people? Derby is the best thing that ever happened to my family. My outlook on life has changed so much in the last year. I wouldn't change a thing.
I cried and blubbered for 24 hours straight, it felt like. At one point I was in the shower and just broke down. It was a Tobias Funke moment.

The boys are even speechless. Well, the twins. Ethan is like: "Why are people doing this? Why are they so nice?" My poor child. Already thinks the entire world is out to get us. So jaded. I blame myself. I wasted so many years being so damn angry with everything.
Evan and Dylan are different. Dylan was like: "I'm so glad we came to Portland. We found our people. This is our home"
It really is bro, it really is.

Next we wait for insurance to get their crap together so I can get to UCSF to have that fun test. AND THEN I will get a surgery date. So many things. SO MANY THINGS. Also, my Neuro is constantly in contact with me, because did I tell you that my brain has decided to have a near constant party without my permission? I had over 10 seizures the other day. (Not Gran Mal, or Tonic Clonic. Just little ones. Still crap. )

I often get caught up in all this and forget to stop and look around. At practice on Sunday I was doing all the things. Don't get me wrong, I am still super slow and a little baby deer like, but I haven't seen chair in weeks. This upcoming Sunday is a new class of 101'ers and I'm excited to skate with them. Who knows, maybe I will finally be able to do everything.
Life is good. Despite the fact that my brain is an asshole, life is really good.  

That's all folks. I'll let you know when something else is exciting.

What's next?

Saw my Neurologist yesterday. We spoke about the next steps to take towards surgery. We also spoke about what will happen if I can't have the Lobectomy.

As of now, the Epilepsy point in my brain is originating from my left temporal lobe. The left temporal lobe also houses the language center, memories, and other important things. About 1/3 of the temporal lobe can be safely removed without affecting language or anything. BUT, first it must be determined exactly what point the seizures originate. If it is determined the seizure focus is too close to anything important, then the Lobectomy will not be possible without problems, so it won't happen.

What does this mean?! It means I need more tests. All the tests. One of them is called a MEG scan. I get to put my head in this ridiculous looking machine and they look at my brain activity. Since there is no MEG machine in the state of Oregon, this is the test I need to travel to California for. The closest MEG machine is at UCSF. As soon as insurance stops dragging their feet and pushes the paperwork through, I will schedule a date to go.
Here's more info on MEG, if you are interested: https://en.wikipedia.org/wiki/Magnetoencephalography

The other test is a SPECT scan. I will be admitted to the hospital for a few days. Anyone who knows how much I hate hospitals knows how much I am not looking forward to this.
Anyway, I am admitted into the Epilepsy Monitoring Unit at OHSU. They will lower my meds and wait. When I have a seizure, a nurse will immediately inject a radioactive tracer into my IV and about an hour later they will put me into a machine that looks at post seizure brain activity. I will likely be asleep for that, as seizures are very tiring and it's hard to function for awhile after.
Here's more info on the SPECT scan: https://en.wikipedia.org/wiki/Single-photon_emission_computed_tomography

Thanks Wikipedia, for your knowledge.

The next thing that will happen, after the SPECT and the MEG: I will be admitted to the hospital and they will open my skull- and an intracranial electrode grid will be inserted directly onto the gray matter. The electrodes will 'map' where things are in my brain. Like speech and memory and etc. I may have to be awake for parts of this surgery to make sure they get it in the right places. That can't be determined until after the other tests. They leave the grid on for a couple days and hope to record a seizure or two. AND THEN- after all that- THEN it will be determined if I can have the lobectomy. If it is unsafe or too close to important things- the lobectomy will not happen.
Here's more info on the grid: https://en.wikipedia.org/wiki/Electrocorticography

SO WHAT WILL HAPPEN?! Well, my Neuro and I had a long conversation about that. I am a great candidate for an RNS. That's this little device that sits directly onto my brain. He had one and showed me what is was like. It looks sort of like a flat fitbit thing. It records seizure and some brain activity and can connect to a remote monitor so information can be seen. Also my doctor will have a way to see what's happening. The RNS scares the crap out of me. I would feel like ROBOMIMI. But if the lobectomy can't happen, this is the next best thing.
Here's the Wiki on the RNS: https://en.wikipedia.org/wiki/Responsive_neurostimulation_device

So surgery is still on the horizon. My doc is optimistic that everything will go well and keeps reassuring me. He is a good guy, I trust him with my brain. I am hoping things go fast because I would really like for this to be over.

Okay, I have taken up enough of your day.

-Mimi