I'm not a morning person

Trying to edit this photo in because.ugh. Blogger sucks. This is Mark and I at my brothers wedding. I look old- everyone thought I was the older sister, good for you Allison. The other is when Mark and were falling in love. This photo was taken while I was doing radiation. My hair fell out, I never felt sexier with that hair. I'm not longer a candidate for radiation, your brain can only handle so much. The chemo for brains doesn't make your hair fall out- so won't have to worry about that again. It will be fun to donate that wig some day, and I will totally discriminate while choosing who. Boom. Fixed this blog post. No more paranoia. Now begins.....

Today was boring, 1 am sucks
Bird howls, I wake up like a raving lunatic. I'm getting on an 8 am train to Orange County to see my mom then go to my UCLA MRI appointment on Monday.
I forgot to charge my phone, my charger is not where it should be. I know Mark fucking took it, and I let this be known. He hasn't been sleeping well, he wakes up every morning at 5/6 am to get on calls, working, working so damn hard, but it's never enough these days.
I tell him I'm on such an early train to get away from him, because he's an asshole. Not true. he's obviously mad at me for running around yelling at him in the middle of the night.
He tells me he's glad I'm leaving. I deserve that. We know we don't mean it. I sleep on the sofa sometimes, the bed is full of beasts, and my neck and back hurt, and I'm suffering from insomnia.
If you look at Gliblastoma side effects, side effects of brain rumors. There isn't really anything specific but insomnia and headaches etc . It mostly depends on where your tumor is and how much it has destroyed your brain, how much it's eaten up your little pizza pie. Or how much your surgeon has used the melon scoop on your lovely fuckin brain. I have a great surgeon and she did a perfect job.
My tumor is in my right temporal lobe. Before surgery it had grown to where it was pushing on my optic nerve. It was causing what I call 'light shows'. Since I have the best surgeon in the world so she was able to get that to stop. It was like there would be a dark spot in my field of vision. Or I would see blinking colors of lights for a minute or so.
I feel bad for Mark. I feel bad for him for loving me so much.
I've told multiple boyfriends not to fall in love with me. They laugh. But they always do. One of the first things I told Mark- sucker.
Sometimes I wish he would just leave me. This pisses him off -a lot. I'm actually the asshole most of the time.
I don't want to put him in pain, I don't like hearing he had a bad day, I can't help but feel responsible. I can't help but feel responsible when I see my mom cry. I don't think I've seen any other family member cry in front of me  because of this. I'm sure they do. I think my dad cried on the phone when I told him. I've seen him cry in the movies, he won't admit that I'm sure.
Omg I can hear the clubs outside still- we live two doors down from house of blues. Seriously..is there not some sort of law about being loud and annoying, and dying, stop dying and making everyone sad.
I'm just joking, I'm not done torturing everyone yet.
I think my chemo is working. Which is GREAT. I get to wait another 6 weeks for another MRI to tell me whether or not the chemo is working and the tumor is growing. I could probably go back to work. If I didn't get so fatigued that would make it easier, my arms get tired when I'm window shopping looking through racks of clothes. What a nightmare- I'm being serious about that one.
It wouldn't be so bad working from home on my art in my non existent studio in a 700ftsq apartment. I may go on disability- depending.
I want out of this lease so bad you have no idea.
I live downtown, I love downtown. I always say I always want to live some place that I can walk to everything I need.
All I want is a garden now. And a bedroom door, I've lived in studios for so long. Just a garden, that's all I need.
This place is so expensive. It wouldn't have been such a big deal if I hadn't have most likely caused mark losing the best and most exciting dream job opportunity of a life time.
He's working for a really cool Polish tech company. He's polish- anything polish he loves. He was so excited, I was so excited. My mom was so not excited. They wanted him to work in Poland. We were set to go.
Then my tumor grew. We tried to think of ways to still go. He wanted to go so bad. I did too. Just for a year we said. I can't leave my family. Period. I can't take a chance with healthcare.
His dream, gone.
We can tell ourselves- we can go later! When I'm better. Yeah.
He still works for them, but not in the same way.
This loft is too expensive. I want out so bad.
I want a house, with a little yard for Sunny. But then... We are going to need a car to get to all the places we will no longer be able to walk to. Then there's the car insurance issue.
Then there's me being a bitch and ruining everyone's life. I'm allowed to feel like this sometimes btw.
I'm sad right now. My neck hurts. I will catch up on sleep tomorrow.
I always sleep well when I'm with my mom. She knows how to rub my back and tickle my head. Just being near here calms everything down. I know nothing bad will happen when I'm with her. 100%
Mark wakes up and asks me if I'm crying. I am, but silently. I have that single tear rolling down by cheek like Denzel in Glory. Sorry to compare myself to a slave.
I'm a slave for you. Have you ever gotten obsessed with watching Britney Spears videos, with lyrics, singing along, maybe dancing. I did. ONCE. Only for a couple hours.
I don't know how he knows I'm crying. I lie. He tells me to go to sleep and how much he loves me.
I'm crazy, and can't blame the craziness on taking steroids anymore ( I'm almost off them)
I guess I'm lovable enough to be forgiven, I flip out a lot tho. Remember I told you they call me the flipper?
Glioblastomas cause side effects by growing, or putting pressure on nearby healthy brain tissue.
Some symptoms. Cognitive , personality changes, memory loss, speech difficulty, confusion and headache. Muscle weakness, visual changes.
Maybe the insomnia is still from the steroids.
Symptoms, increased appetite, especially for sweets. Weight gain, fat deposits in the cheeks (wonderful), insomnia with excessive feelings of well being  And euphoria. I wouldn't exactly call it euphoria. It kind of feels like your brain is dead tired but that your body is buzzing with energy. For me it makes me feel so bored- but unable to do anything about it. Can't take a nap, concentrate.
But now that I'm almost off them this is getting a little better
They give you steroids to help reduce swelling in the brain. Now that my headaches are mostly gone I'm hoping I can go all the way off them.
Why do people stand in the street and just scream? Ok crazy street bum, maybe you have something to scream about. But frat boys, shut up, really.
Because reoccurance rates are so high, many clinicians take a palliative, rather than curative, approach to treating GBM. But that need not be the case, said brain tumor specialists with Indiana University Health Neuroscience. I want to go visit this hospital next. I had totally forgotten about them.
Mark and I are stressing the importance of this. I'm not here to try to improve my quality of life. I'm here to cure my tumor, we are going to get rid of it completely. Docs don't like to say things like that. Because their medical books say it's impossible.
I truely believe I can do anything I want to if I try. Probably comes from me being a spoiled brat.
I think doing research online about your medical condition is extremely important. fOR sure do not believe everything you read on the internet. But I think it's important to educate yourself, know what's happening with clinical trials, different treatment options, personal stories, even what is to maybe come.
I would like to stress researching what's going on to my family and friends. It helps me not feel so alone. Or maybe ask how I'm feeling sometime, or respond to my emails.
No I'm probably not talking about you.
Sorry, I'm allowed to be sensitive sometimes. No I don't have to be patient with you all the time, or try to understand where you are coming from.
I do try to do this 95% of the time! because I don't like seeing you sad.
Sooooooooo, I'm gonna be around for a long time, if only to flip out on you in the middle of the night.
Or make my mom giddy about me coming up a few days early just to hang out. I'm excited too.
I want to go eat a bowl of cereal, but the spoon on the bowl will surely wake my Mark up. And I'm sweet so I won't do that. And besides I just ate some yogurt. In 2 hours I will get up and have four waffles, shut up.
Seriously- best part of waking up is....eating.
Goodnight and goodmorning.
Xo
-k