WHAT. . . .

A crappy day.
Woke up and was just not feeling good this morning.
Went to Dermo and thankfully nothing serious, so he froze the little suckers, called them Flat Warts. EW
Other than that, I just have nothing to say except I'm just getting sick of bad days and I'm really trying to have good days. . . .Doesn't seem to be part of the plan right now.
UGH!

MAYBE. . . .

If I blog this, I can somehow understand why I feel like this.
It's like when I put it down and send it off, I've somehow released it, can put it in perspective and try to move on.
I don't know, maybe I'm just full of shit!
The greatest day in my life? The day I had Hannah. I knew she'd be amazing.
The saddest day in my life? When I realized that there is nothing I can I teach her.
Well maybe I could teach her, but there is no receptor,
kind of like my triple negative, no receptor's....interesting,
just thought of that one, guess the brain function is returning here, I know the low dose steroids have made a big difference so far.
Back to it. . . .
I had no relationship with my mother and we barely spoke.
I wanted everything so different but maybe that's part of the problem, it's what I want, what I had wished and longed for in a mother.
Hmmmm. . . .
So really, it's not fair of me to put that expectation on her. Just thought of that too.
I have friends that have incredible relationships with there daughters, and to be honest, I am really envious of that, and wish I knew how to get to that place, if it's even possible to do that. I'm not a negative person, but I'm kinda thinking that'd be a no here.
So I'm thinking this is part of my journey too, and to be honest this all really sucks!
Maybe I'm in a mood, but I don;t think so.
Today has been pretty good, so. . . .

I . . . .

Just realized I did not post a pic of my recent addition.
I have a pair actually. (Eric has the same)

OK. . . .

Who knew bingo would be so much fun?
Now if the other half of my brain was working I may have done some damage. haha
However, I did win a free night of Bingo and I'm getting one of those Bingo machines. They are pretty annoying though, because the people that have them know ahead of time that they have won (or something like that)
It was just fun to go out, I was pretty tired, I can't remember the last time I went to bed so late. We are talking, at 7pm I'm already asleep.
But back to bingo, what a trip!
Right now I am so hungry I could eat the rug. Didn't have any dinner last night, wasn't hungry until I got home and I wasn't going to eat a meatball at 10:30 at night
so. . . . .Gotta go get breakfast.
Hoping for a good day!

WHY. . . .

Are UTI's so much fun?
I was up peeing all night, I'm talking 10 times.
Reeallyy!!!
Never ate dinner, so I woke up sick from meds,
I'm saying it... FUCK ME
The food thing?. Well this is ever changing.
I seem to be on the gotta eat breakfast as soon as I get up, and If I have lunch I most likely won't have dinner. Some days I won't have lunch or dinner.
Who the hell knows, I'm not hungry most of the time even with the pot.
Fun stuff.
On a different note, I'm going to try to get some volunteer work in at the hospital, and one of my friends told me last night that she helps feed and serve the homeless, I asked her if I could do this too.
I would LOVE to do this

TWICE. . . .

In one day?
Yeah forgot to add this little tidbit earlier,
I also have a bladder infection.
It started last night, lucky for me I got right in to Reg. Dr and now taking more meds.
The adjusting down on the steroids is harder than I remember going this low.
I am in a crabby, crabby mood and I'm just not having any fun here, not like this would be fun but it's just a messed up day.
All I can say.

YAY. . . .

OK, took one half of my steroid, so now I am on 2 mg., then we will see next week where I am, I'm thinking like I said before, it's going to work out and I will get off of these completely.
Now I've got some weird skin things on my arm, not from the the tatt, from?? who the hell knows, just all part of the fun and excitement over here.
I just want him to dig it out and hope it is not some kind of skin cancer thing, that would fucking suck!
I mean what is new here? just get it off of me and and make sure it doesn't come back. I'm kinda done with this stuff already.
I'll find out on Tuesday what it is. Oh Boy!
And yet another Dr.
I know how to have a good time

OK. . . .

So the Bubba and I have a matching tattoo that we got the other night. His first, and he thought that was painful. Funny, try getting one on your foot like I did. Talk about painful, this was nothing.
He said that he has seen a huge change in the way I have been acting, so apparently the taper on the steroids is working as far as my mood goes if he is seeing a change as I have been feeling a little better, but I just need to get down to 2 mg now, then I'll really start to believe I'm getting off of this nasty ass drug!
I hate the fact that I feel like my life is defined by my cancer, but I guess it is. How do you avoid that? I don't really think about it, or talk about it. But it's there.
I am trying to make sure that I try and contact my friends, I have been really bad about this.
Don't feel like talking, or texting, sometimes it's just too much effort, and I know that probably sounds strange, but unless you've been on this trip before you really have no idea.
I just called Dr. A to see if I can go down to 1/2 roid, and if I can have a margarita. Silly right? Oh well, I just want to cover all bases in case I actually do drink one, and being on anti seizure med....well who knows.
We shall see what he says. I'm thinking yes on both counts.
Anywho...look at the tatt pics on my face book, pretty cool. . . . and yes one more is coming, but not for a little while.
No sleeves, or scenes...I'm not hard core here, but I must admit, I do love how they look.
Today I'm hoping will be a good day, if I can get a nap in it will be for sure.
Gonna make some granola for my girls at Dr. A's office.
I love them!! Jasmin and Chelsea....AWESOME!!

SO. . . .

I slept 'till 7am.
I was only up 4 times last night, each time I'm up I'm wide awake, ready to go.
Obviously I'm not going anyplace at 2am, but my body thinks it's time for breakfast.
This eating thing is so screwed up.
I'll wake up really hungry, but when I sit down to eat I can't eat much.
Except for pnut M&M's...that sounds good...need to go get some later.
but seriously, I still feel like crap from this steroid, I don't remember when Dr. A said I can go off completely....I have a feeling it's not until after the next MRI in OCT, I friggin hope not.
I barely recognize my face, once again I am so swollen and I hate how I look.
One time this person I know comes over for a visit, know what she says to me?
If I didn't know it was you I wouldn't recognize you. Swear to god, is that about one of the Stupidest things you've ever heard? Well she said it, and it made me feel horrible, I never said anything to her because whats the point? If she was stupid enough to say say it, then what could I possibly say in return?
I really would like to forget it, but how do you forget what someone says about your face? I mean it's your face. I'm not a vain person, just very sensitive about that.
I can't deal with this too much longer. I can't really do anything because I am so tired. I mean like REALLY tired.
So with that said, I'm thinking I will cut this short as I don't have much to say other then the white noise going on in my head.
I think that means I need to go shopping or something right?

UGH. . . .

about says it all right now.
So glad that I am getting off of the roids but I am so tired..exhausted really.
Feel like I've just worked out. What did I do? went to the market and am trying to decorate a little for fall.
Eric said a month ago I would not have even been able to do this.
Hard for me to imagine because I never get tired like this.
Sleep wise, up and down all night.
I can't remember the last night I slept through....maybe I need to use more pot when I use it to sleep??? hmmmmmm
As for now, I miss Hannah, she left yesterday.
All we do is fight when she's here, then I miss her like crazy. Makes me so sad because This has been hard on all of us.
I'm still not right, and not sure when I will be, if I will be, etc, etc, etc.
Like I said, UGH!

OK. . . .

****WARNING****
For those that have never read this...Welcome!
I usually write everyday, and if you don't like the word FUCK, FUCKERS anything like that, then don't read this blog, no filters on my end...

With that said,
MRI results. . . .
I don't even know where to start with this because there is kind of alot going on here and with half a brain it's hard.
The PERSON who has the other half of my brain has not been sharing very well lately and I'm kinda pissed at her. haha, but I have to love her because look what she does by sharing a bad brain!

OK, on to serious stuff right...

so I still have the giant blood clot from hell, or as i like to call it, the blood clot highway, and we are riding in a red Cadillac, not a pink one.
No changes, what the fuck does that mean?
Dr. hasn't even seen the Doppler, so how can his office person say that? what an idiot...sick of dealing with stupid people.

OK, I am officially off of blood thinner as of today, I can get another tatt. THIS makes me happy! for those of you out there that don't like them, all I can say is it makes me feel happy, I love them.

So, yeah...MRI....I am having another in Oct, The tumor I have is not growing, so the last Gamma seems to have stopped the growth, because it had doubled in size in about 2 weeks. Once again, very aggressive and fast growing.
I still have swelling and there is blood along with swelling.
If I don;t get any headaches then I can stay on 1 3mg of steroid until we get off completely. Obviously I am PRAYING for this, I have had a couple of headaches, but the pot seems to help and Dr. Ahn said OK to continue with that, he would prefer me to use also in place of any sleeping pills.
All I can say is this, no matter how you feel, PLEASE vote to legalize MJ it is saving my life and I know it does with other people. Honestly the whole thing , with the pot, is strange, but it is what it is.
You just don't know where the journey will take you and you really have to have an open mind and heart and don't judge.
At this point it's what ever works.
So any who, it's still there, but not growing. I am hoping nothing new pops up, but we won't know for a while.
We decided not to another Craniotomy
...ugh yeah, that's not going to happen anytime soon as far as I'm concerned once was enough and I'm not getting a zipper put in my head so there you go.
So for now I think that's about it...
Just trying to get back to where I was so I feel kind of normal, what ever that is.

Well. . . .

I just wrote this whole page and didn't save it.
right? only me today....
I should have been blogging all the way through this, but it's been so hard.
I have no energy, and really nothing to say to anyone about anything.
Mostly what comes out of my mouth these days is nothing but shit or is just plain shitty.
I have no point of reference in my life. No joy, no fun, just nothing but stress here, and I'm feel like I'm going to explode most of the time.
I hope one I get use to this lower steroid dose, or maybe off all together it will be of some help here.
Unless you've done this before you really have no idea how hard this is, and honestly....the only thing that is helping me is the pot i am using.
Thank god for that at least.
I just want this over, I'm tired of crying and being upset.
I don't even know what to say anymore about this.
So I will keep on writing, and maybe I will get it together shortly.