Jury. . . .

duty, not this year.
Although I wouldn't have minded serving, but the one the courtroom I went up to, the trial starts next week, and goes until August 27.. Are you kidding me?
I had to do the obvious thing there.
Oh well, maybe next time!
So Dr. A yesterday. . .
We talked about cutting down on my steroids, and he took me off of the anti seizure med, (that's a YAY!)
The steroid taper, here I go again, and he said that's probably whats affecting my UC, well I say a F ME on that front.
And the taper, well this will really make me tired, so I am going to have to play around with it.
OK, I want to be tired for a change, like the gamma didn't make me tired enough.
Like I've said before, I know how to have all of the fun.
I will need to have another brain MRI in about 6 weeks, so I guess I'll try and get that scheduled since he gave me the RX.
I just have to make sure the blood god is at Rolling Oaks that day, as he won't hurt me.
Never thought I'd have so much pain and swelling from blood draws. My left arm looks like a pin cushion from last Friday.

right. . . .

now, I'm not having any fun.
Yesterday, out of the blue. . .I had a flare up.
Yeah, that would be my colon talking talking to me now, saying hey, don't forget about me, I've been quiet for almost a year, it's time to wake up and have some fun. . . . or for me some pain, some bathroom time, some I'm exhausted and yeah some dehydration.
I mean, why not spread it all around?
Last year with chemo, to be specific TAXOL the drug from hell, I had a major flare up, but really that wasn't a legitimate one, so now I get a little more fun! woo hoo
The good times just never stop!
Well, I'm on my way to Dr. A, (liking that rhyme) and shall see what the word is on the brain front. Kind of funny actually, brain, butt, one end or the other. . .
That's me being funny.

ok. . . .

swelling. . . so, I go to the Dr. and she takes some blood, although I have to say, it was questionable to me as to why.
We called the nuero, he said he isn't really in charge of my meds any more, but Dr. A is.
My primary did not want to give me any kind of diuretic, just defer to the Gamma Rad. Onc that I will see on Monday. (Dr. A.)
Limit your fluids and don't eat any salt!
Give me a break really?
Today the swelling is better, so honestly what the hell is going on??
And about the blood thing, while I'm on a slight rant. . .(Leslie, remind you of old times?)
I can't have any blood drawn, or BP on my right arm, so only on the left, now every time and mean EVERY time I have blood dawn, I am dealing with pain and swollen veins.
I put ice on my wrist went I got home yesterday, yeah love those wrist draws, it's not horrible but it is bruised, and the vein in the bend of my arm, where she started to take blood from, (notice I said started??) humungo bruise and my arm hurts.
The only person, and I mean ONLY person that can take blood and not hurt or bruise me? That awesome guy over at Rolling Oaks, but it's not a lab :(

My. . . .

ankles and feet are swollen.
What is this from?
Going to the Dr today, that is once we figured out WHO my Dr is.
Seems like no one knows??? Or wants to treat me???

ummm....

how on earth does this dried phone work? talk about feeling stupid

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Ummmm. . . .

it's Thursday, what a long week.
Still feeling tired, kind of strange I should have gotten past this tired thing by now, (or at least I thought I would be past this now)
Need some time off, but not like next week..Dr week, like a vacation.
What's that?

It's. . . .

been a few days since my last post!
Was a long hot waterpolo weekend, though it was fun to watch and girls are nice. Met some great parents and I think this is going to be really good for Hannah.
What I am finding out is how tired I am.
They told me I'd be tired that day, the next day,(of gamma treatment), but here we are almost a week later and I am pooped! and I mean POOPED
I find myself working, but feeling like I could just go lie down and go to sleep. I haven't really experience this as yet.
I had been more pumped up because of the steroids, and now I am just tired all of the time, and it sucks.
I don't want to work, I don't want to do anything but lie down and read or sleep, but I feel guilty and feel like I really need to push myself through this and work. It's also so not like me!
Yesterday Eric said let me see your head...yeah I'm going friggin bald over my ear, and I look like a freak..great
I have one area below where the hair is good, and above the incision scar it's good, just this ugly friggin hair falling out bald spot on the side of my head.
I went through chemo, bald and I was fine, I embraced it, I shaved my head. I was good with it.
But I didn't really know this was coming and it's not a vanity thing so much, because I don't care if I'm bald, I don't need to wear scarves I have this really expensive wig, I won't even wear, in fact I've never worn it.
It's just hard to explain, it's like part of me feels like I've been through enough, and I just want my hair to grow back.
If it grows back it's like it's over, or something like that.
I've never really thought to much about the fact that I've had brain cancer, and surgery and gamma twice, I just take it in my stride and go about what I need to go about.
This just really bothers me, and I just can't stop crying today.
I wake up at night and my head hurts from where the bone is growing back, and it itches from where the nerves are growing back.
If one is trying to move on it's really hard at times when you've got all these things constantly going on in/on your head. And I'm not talking about just emotional stuff!
I mean while I'm at it, I'm fatter than I've ever been, I feel and look gross, I hate being on these steroids and need to get off of them. I know they make me CRAZY! I'm bitchy sweaty and just plain crazy.
When we are doing something I can be distracted which is great, but I've got to get off of these.
F it, I'm calling the Dr.

Today. . . .

is FRIDAY!
What a long week, I am soooo tired from Wed.'s treatment.
I only woke up twice last night, and when I was up at 4:00 am I was actually able to get back to sleep and I slept until 6:00 am.
That was nice.
How I'm feeling?
Well my head is still swollen on the right side, (on forehead) from where they screwed my halo in, and so that still hurts.
I guess sleeping on it all night doesn't really help!
I was told that because the bone is still growing back and healing that this side of my head will hurt more..uh yeah.
Other than that just dandy!
So what Eric was told was that things has shrunk, and I'm doing good, but there was some little "sliver" of something and they weren't really sure about what is it, possibly some kind of by product? "sliver..like a slivered almond size of sliver?"
Ok like what is my brain, dog food? yes we use by-product in our food, I mean seriously, haven't they seen everything?
So , I go see Dr. A in two weeks, and then? I guess we just wait and see. (some more)
But I can do that, that's not a problem.
As strange as this may sound, I don't really even think about much of this.
I had a tumor, almost died, and then they took it out, I've had gamma knife, but it's not on my mind.
What's on my mind? should a get a pedicure, and I'm looking forward to the weekend, because Hannah will be playing with her college team on Sat and Sun.
I want lypo on my neck, big time, but we can't afford it. That's whats on my mind mostly!
Now that's something to think about!

OK. . . .

I confess, I don't want to do this again tomorrow.
Can't seem to think about anything else, and honestly I'm in a really bad mood and just can't shake it off!
No one around here gets it, or me.

Three. . . .

days and counting.

I. . . .

got a call just a little while ago...
Hi Judy, just calling to make sure you're ready for next Wed.
Oh yeah, don't remind me.., "yes I'm ready, and looking forward to it" I lied about the looking forward to it part.
Any changes in anything? like medication she asks..why yes I've dropped 50 lbs thanks to being off the steroids...(i think to myself)
No, no changes, everything is the same, other than the fact that I'm tired all if the time, Well that's to be expected she adds.
Ok, then , we'll have all the paperwork ready and we'll see you at 6:30 am on the 14th.
Oh Boy I say!
I can't wait for the head shot/injections- crunching -screwing thing again.
Note to self: Oh yeah and remember, don't move your legs again while your having your MRI or they will stop and think you're having a seizure and have to start all over again..
I think water polo at cow pie high in 110 degree weather will be much more fun this weekend.
I can do both!

I'm. . . .

puzzled by some of the questions I get.
Do people really want to know the answer or is it that they like to hear themselves ask the questions?
When you tell them the answer to the question they've just asked, it's like this shocked look that comes over their face.
Why the hell did you ask then? if you don't want to know, then don't ask. Right?
Along with those kinds of questions, I get just stupid things that I really want to just give a sarcastic response to but I try really hard to bite my tongue.
And some times, its REALLY hard.
Some of these questions can be answered by ones self and a little common sense. Seriously!

When I go back on the 14th I am thinking about a three Ativan morning so when he gives me the Lydocane I don't hear that crunching sound, or maybe that was when he was screwing that thing into my head.
Yeah, and I want to remember to ask him about the plate in my head, do I really have one or was he messing with me?
I think Dr. C likes to mess with me because he thinks I'm so tough. . . .

Right now, I'm looking forward to a water polo weekend, and things are looking up, for two days we are not at the stinky cow pie high school in Norco. there is a god!
I'm so easily pleased these days!

Friday. . . .

still soooo tired.
I thought they said tired the day of, little tired the next day, but then good to go.
I woke up this am, and had slept pretty good last night, but just feel wiped out.
Maybe I should just be ok with that, and not expect so much.
After all, I had like 200 laser beams pointing into my brain, right?, so who really knows how one is supposed to feel!
And yeah, I'm here to talk about it.
I need to remember this stuff!
All in all I feel pretty good, I'm still swollen on the front part of my forehead where he screwed this thing into my skull.
I'm wondering if he screws it into the same place again, next time?
Shit, I hope not!