Wednesday, June 30, 2010

SO. . . .

Just got home, and I'm tired and wired. Got mega does of steroids after gamma knife.
So what we found, was another little tumor that was hiding, and we couldn't see it because of all of the swelling.
Fortunately, we zapped that guy, so that was a good thing.
The rim that was also found is tumor, so we treated 1/2 of that, and I will be going back on the 14th to treat the rest of it. The cavity has shrunk, but not enough for this to have been taken care of in one treatment.
The numbing shots were a bitch and hurt so bad. And then I could still feel him screwing this thing into my skull, so yea, that meant more shots and more pain/burning.
Once it was one it was ok.
Then this globe thing to take some measurements, then basically off in the ambulance to the MRI place. I of course was moving my legs around so we had to do a couple of the MRI's over. It figures!
Then back to Gamma Knife, and snap me in, or I should say lock me in.
And away we go.
I almost fell asleep during the thing, not like an MRI machine because no noise at all, and a little warm, made me kind of sleepy, (although that could have been from the two adivant I took as well?)
Then major does of steroids , again, and we just see how I feel tomorrow, prob tired, so I'll just lay low if need be.
One more treatment, then the next MRI will be in two months.
Gotta big fight on my hands, but I can do it!

Tuesday, June 29, 2010

OK. . . .

tomorrow is the day.
I'm still a little freaked out, but overall I feel good, I just want this over with.
I want to get my MRI in the am, and see how big the cavity is, and see if the "rim" is just that, a rim. no tumor please!
Saw the Eye Dr. yesterday, he said the optic nerve is getting better, but still no glasses, man my eyes are so tired and strained. I can't wait to get some glasses, funny huh?
I just really need the relief here with the eye thing.
other than that, I just don't know what else to say, I'm just trying to not think about any of this.

Sunday, June 27, 2010

Three. . . .

days and counting!
Can I pull off the Frankenstein thing or not?
It's my plan, but if I'm really freaked out once they screw this thing into my head I may not be able to do it.
I told Eric we have to take a few pics so I can put them on my facebook, for inquiring minds that want to know.

Thursday, June 24, 2010

The. . . .

nurse visit at the Gamma Knife went really well yesterday.
Karen is awesome, and she explained everything and took us on a little tour.
This way I have an idea of what to expect and if I had any questions could ask and so on.
She asked, "do you have any questions?" umm yes, will I be sedated? I sound like a druggy I know, but I am a little freaked out about my stylish hat that gets screwed into my skull, I guess that's their version of a SKULL CAP. uhh right!
So yeah, back to that whole process. . .
I come in at 6:30 am, and get to have an adivant, then I meet with Dr. C my neuro surgeon, who will put some numbing cream on my head, then some kind of numbing injections, that will burn, and cause bumps on my head, then she screws this thing into my head. , on the front part of course.. . .why do they put this contraption on you ask? so so when I go into the MRI machine, it has a way of giving them markers, so they can map and measure so they know where to direct the 200 laser beams. seriously!
Ok, so the Halo is on my head..(not the cute little oh look an angel halo) but a Frankenstein monstrosity, maybe after they put it on, I'll have to get really dramatic and walk with my hands in front me and say..MMMMmmm ( a girls got o have some fun, right?)
Ok, then they put me in an ambulance, and I go up to the hospital, hey they don't want me walking through the parking lot like that, I could draw attention, and yell help, look what they are doing to me!!, so then the MRI and then the little ride back down the hill, and there I wait for them to map out the big plan.
And oh, by the way, bring a little snack. . .I could be waiting quite a while for them to get their neuro surgeon, neuro physicist and Radiation Gamma Knife heads in agreement.
Ummm yeah lets get this right please it's my brain we are messing around with here!
Then, oh yeah the best part, they pop my head into the helmet things, and you are locked in with your head kind of suspended and it's kind of like an MRI machine except only the top of the head goes in, and no noise.
So I can bring a CD or she can play something that she has. . and the best part?? this only takes 20 minutes.
Then I rest and then go home and I'll be tired, but should be good to go the next day.
Now for those of you with inquiring minds and are asking well do they get everything, what exactly happens, and so on. . .
Well, we won't really know a lot of this until:
1) We have the MRI that morning to see how big the cavity hope here? it's 3.5 cm or less, that way I don't have to do this again in three months. . .so that's what I'm going with here
2) Dr.A will tell us after if the rim had tumor, and if it did, that's what he goes after first
3) We will know more about all of this after the procedure, can't guess here, so that's about it
I'm not afraid, except I'm a little freaked out like I said about this thing on my head, so other than that I'm good to go, and lets get it done already!

Monday, June 21, 2010

It's. . . .

about time! I've finally got my Gamma Knife appt set for 6-30-10 YAY!!
Wed go to meet the nice nurse, and go over what ever it is we are going to be doing.
I guess I'll ask her about the globe on my head and the drugs I'll be wanting. :P
Does that sound bad??
Human pin cushion tomorrow, but I can handle that.
Ok so here we go, and I'm feeling good and ready to get this crap out of my head once and for all.
And we will know exactly what is going on.

Sunday, June 20, 2010

Monday. . . .

I should get the real date for the Gamma Knife.
It was scheduled for the 8th, but now we are moving it to the week before, so I am thinking it will be the 1st or 2nd since they only do this on Thursday and Friday.
I want to make sure they have me scheduled with the"nice " nurse too!
Blood tests on Tuesday, and then at some point I have to go in to go over what we do during the procedure.
Big Gulp, and we aren't talking about 7-11 here.
I'm just hoping they kind of put me out because I don't know how i'm going to feel with some giant metal halo screwed into my scull. . .lets see. . .ummm. . .shall we dance, it's like a humpty dumpty thing but on my head, right?
Like when Dr Evil had that giant globe on his head and he was falling all over the place from the weight of it.
Yeah, sit me down and put me out please.Then they are going to snap me into this giant old fashion hair dryer thing, again, sedatives please.
I'm not thinking this is going to be bad, and I'm not afriad, it's just more of the unknown factor, and at this point I can almost fall asleep in an MRI machine, I'm just not sure how things thing on my head will fit in one, since we have to do the MRI with it on.
I don't get that part either.Well i'll know soon enough.
And as far as the eye goes, still some eye wierdness with my right eye, so it will be interesting to see what Dr. H has to say on the 28th

Thursday, June 17, 2010

This . . . .

really pisses me off.
9:00 am I call this am for Gamma Knife appt, and the person I usually speak to is not avail, but I'm told she's busy working on scheduling, and will call me back.
3:15 no call so I figure I will call back and see if it's set up.
I get the same woman on the phone that proceeds to me that the scheduling person is not there and that she's been busy re-scheduling other patients, working on insurance problems, basically telling me that all of these other things are way more important than me and what am I anxious about.
What am I anxious about? I have some tumor in my head and I would like to get this going, and she tells me well you had surgery, and we have to let the area shrink I say, I hope this doesn't sound bad, but I don't care about all this other crap she just told me, I want to know when I am having this done so I can move forward.
What a bitch, then I ask her who she is and she tells me I'm one of the nurses!
Are you kidding me, if she's one of the nurses than I certainly don't want her nursing me because what a cold fish.
Right now, with this, yeah it's all about me and what is going to make me feel better? having a date set for this procedure.
I told her Dr. A told me to call today and get the date, and she says, "well the Dr's always want things done on their schedule and it just doesn't work that way" this lady should not be on the phone, and if she is she should be sympathetic and kind, say something like this, "I know this is a difficult time, and we are working on it. so and so is gone for the day but feel free to call her tomorrow if she hasn't called you first", "everything is going to be ok!, anything else I can help you with right now?"
Umm, that's what I would have said, not more of this, well so and so has been here since early this am doing this, we've had to move patients around and we only do Gamma on Thurs and Fri.
I wonder if Dr. A would like to know this, but then am I starting a war here?
Do I say something?
Am I crazy?
Yeah I'm a little hyped on steroids as my dose increased, but I don't know,
I don't think I'm too out of line here!

Wednesday, June 16, 2010

Where. . . .

do I start?
eye is getting better, I can tell because I don't feel the pressure all the time I still have moments of things not being clear, but nothing like when I first got home.
Oh yeah and lucky me, I get to up the flippin steroids to 4mg 2x a day for the next 2 weeks, blimp city here I come again, and that means bitch city too, because I don't do well emotionally, I cry more and and grumpy and get a little hyper. Thanks Dr. A
Speaking of Dr. A., I got the full results from him just a little bit ago, and well I'm kind of sitting here in a little shock. Maybe that sounds overly dramatic, but what is dramatic with cancer ?
I think, ok Dr.C goes in with his big ice cream scooper and scoops it all out and they say, "he got it all". . . . So we are just waiting for the cavity to shrink and we need to do Gamma Knife on the cavity and just keep things in check. I feel relieved. almost Happy, but to be honest not completely happy because in the very very back of my mind I still feel like something is there. and it's not a wish but a feeling, and the thing I hate about myself, yes hate is that I am always right with this "little feeling" thing I have. I've had it all of my life and it never fails me, I mean NEVER.
So with that, Dr. A says well , "results overall are good!" overall are good ring through my head as he said that. . .overall are good. My cavity has shrunk to about 5.3 cm, was at about 6cm, however on the resection cavity (the whole in my brain where the tumor was) ...results overall are good still playing in my head... there would appear to be a rim around the cavity and we are not sure if one part of that rim is tumor. Wait didn't he say "Results over all are good", what the f does that mean?. . .As I push him he said well if I have to guess I would say that one little part of the rim could be tumor, and we can get that easily with gamma knife, we just may have to go back in 3 months to radiate the rest of the cavity.
We were tyring to avoid that, as to avoid brain swelling.
See I think this is really great news because we can get that, and then it will be gone and then we go back for the cavity radiation part, I just didn't want to have any of this crap in my head anymore, I wanted it out, and i just wanted to get on with the rest of it and be done for a while.
Part of me feels sad, but I guess I just have to suck it up because the big picture is good, and that is truly what I feel in my heart of hearts, I feel like we will get it, and then we can go forward, just a little hiccup and I am so strong and will and can fight this, i just wanted a bit of a break.
I'll have it, just not in the timeline I was thinking.
So gamma knife in two weeks, and just need to get the date . . probably tomorrow I am guessing we will have that set and then we will go forward from there.
Ok, I think I'm going to wax my upper lip now

Monday, June 14, 2010

Yeah. . . .

it's great news.
Brain MRI back and no thing growing where it shouldn't be. Mid line shift gone (my brain shifted 9 cm) , and back to normal, swelling gone down a bit and the cavity is shrinking.
So Dr. A gone until Wed., I can wait to talk to him about when I will have Gamma Knife. I'm thinking next week or week after the latest, but at least I will have it and nothing has grown back!
Now I just have to deal with this friggin sinus infection. . . where did this come from? I've couching green all weekend, and I can feel it going down the back of my throat. YUCK
I can totally handle this though, this is nothing compared to what I've been though, lets say it's a slippery walk in the park.
Tomorrow I should start to feel better. . . . and by Wed. even better . . . . YIPEEE
Hannah left for her 4 day grad cruise, I know she will have a great time ! ! ! !
If anyone wants to know about Gamma Knife, here's the link:

Saturday, June 12, 2010

So. . . . head is kind of weird now, and not exactly flat (if you will) on the side where he took my skull out, and then put back. .
Not smooth,
And I'm not talking about the healing area so much. .where the zipper was. . .
But below the "zipper line" is a little inset.
Do I grow that part of my hair longer , like when you are trying to even out a cake but add extra frosting to make it level?
Speaking of level, why don't they put one on your head and make sure it is?
They have those really cool ones with little laser beams.
Maybe I should get one for dr.Chan although I'm not sure if he will think it's funny, and might just give that I'm a neuro surgeon stare and not not speak.

Talk. . . .

about weird!
I go for my MRI yesterday, and the Dr. says it's so great to see you see you, last time I saw you was when you were on a gurney and you weren't feeling too good. I told her, I don't even remember you! (we've met before?)
Wow. . .MRI went good and it was really movies but hey, it was over in a snap and she got my contrast in without a problem and look ma, no bruise!
Maybe I'll get the results today? wishful thinking, it is a Sat. but hey. . .maybe Dr. Ahn will find out . . .
Stupid stuff: I am just wondering why I had talked to someone before this all happened and now it's like I've got the plague. It's really strange and I don't get it. I see them on FB and I've just kinda been waiting and . . .nothing. It's not like we were great friends, but maybe what seemed friendly was really based on something else and I misunderstood. I'm guessing that's it, and it's fine, but I noticed it and Eric did. . .oh well totally fine. . .I'm over it.
It's Saturday and I'm here!

Thursday, June 10, 2010

Ummm. . .

A bit of a whirlwind these last couple of days.
Scans all clear..Thank God. I felt in my heart of hearts they would be. It's the brain thing that really has me freaked out because it grew so fast...(6 cm in 5 months)
Kind of all I can think about right now.
I am having a brain MRI tomorrow at 6pm to see whats going on.
How much the cavity has shrunk, and if there is anything else that we didn't see before because of the swelling, and if anything grew back.
Dr. Chan wants wait about 1 month before gamma for swelling and cavity to get smaller. Dr Miller and Kaul want it now because it's aggressive.
If the cavity is too big, then I'll have to do this twice, and then that can cause a little more swelling, which Dr. Chan does not want me to have to go through.
The best case scenario? the cavity has gotten smaller, and there is no tumor starting to grow.
Then Dr. Ahn, can wait a couple more weeks, and then we will only have to do this once. (at this this time)
that is what I want and that is what I have to think positive about. Nothing growing in there, and the cavity is getting smaller. they can estimate how long this will take to get to about 2cm, which is the best size.
Ok, I'm down with that.
I'm trying so hard to think positive, and not worry, but to be honest. . .it's a little hard. I am trying to muster up all the positive energy and thoughts that I can and go with that.
this is what i want and this is whats going to happen, and I am going to get this shit out of my head once and for all.
My ear is getting better, and doesn't feel too much like it's full of fluid, and today my eye is a tiny bit better, but I just have to let that worry about my go, as this is going to take time.
Hannah's Graduating in a couple of hours, I can't believe it's here.

Tuesday, June 8, 2010

well. . . .

it's Tuesday.
Didn't sleep too good last night. tonight I will take an ambien so I can sleep, I feel a little out of it today.
Yesterday I had my full body scan, and Cris is amazing, he got that injection in without any pain what so ever. I told him If I need any more IV's I want him doing it! Wonder if he travels to the gamma knife???
Will get the results tomorrow from Dr. Kaul, I am really feeling quite positive about that. I really haven't had any fear there.
Dr. Miller got the MRI spine scan today, so I am hoping soon for those results, for some reason I'm a little fearful there, but I think that really has to do with the fact that I had this whole brain thing, and neck thing, and well your spine is connected to that. isn't it?? in my heart of hearts, I feel it will be clear as well. I just want to get this appt set.
then I see Dr. Ahn on Thursday so we can discuss the gamma knife. he left a message saying that we will prob wait about a month for the cavity to shrink. I will go with whatever they all decide, not like I can really say what I want, because honestly, i have no idea hear. hey that's why they get paid the big bucks. Literally!
My hope regarding myself for the week, all test back, and a plan to go forward with. Waiting is really hard, but I guess part of the lesson here.
Hannah's Sr. awards tomorrow night, I am so excited for her, and then Graduation on Thursday. I can't believe it's here, and I am so glad I was a jr/sr parent cuz those get into grad early tickets will be so nice!!

Sunday, June 6, 2010

So. . . .

yesterday. Hmmmmm where do I start?

Lets start with MRI. All was fine I was actually just fine lying there with the fan blowing, even though the noise is a little much, it really didn't bother me until the last one, that was was a little intense, if I had hair, it would have been blowing just from the force of the noise itself. Seriously.
Then came the contrast part. Needless to say i couldn't finish the test. Can't use my right arm, and my left arm is shot, thanks to low fluids, swollen arm, bad bruises and so much pain. Poor Katie she tried in my arm, twice in my hand and it was o painful I couldn't take it. Mu calm mood turned to complete upset and I just wanted to go home and go to bed.
I am hoping we don;t have to do this again, or if we do at least give my arm some time to heal because I can't do this again, and I am hoping the injection tomorrow will not be a problem.
Ah tomorrow, the Scan. The Scan that will show that I am cancer free and I am good with that for now.
It's hard to talk about about I feel physically, because it changes so much. what I hate the most? not being able to just drink what I want, and it's so friggin hot I just don;t want to think about it today. I may have Eric all Dr. chan and find out if we can make an exception today. I got so overheated yesterday, and it's kind of like all I can think about.
Strange, I have brain surgery and all I can think about is how much I can have to drink.
Ok that's just me being me, so nothing new there. Guess that's a good thing.
Hannah's party? wonderful, I am so happy we did this for her. We are so blessed to have such wonderful friends, and I am so overwhelmed by this.
Hannah's friends are something, and I am so happy to see the people that love her and care. does that sound funny?
And the Food? ummm YUM, Taco cart...great idea. The Cakes...big yumm, there is a little in the fridge and I am going to have like the smallest sugar today...wait, right, OK I will have it tomorrow. . . worth the wait.
So get back to cleaning up, and then some thank you least from me. Hannah's got to get those done before her trip.
After all, it was fun doing those envelopes, so she better use the darn things.

Friday, June 4, 2010

A. . . .

little confusing now, gamma no gamma. Sheesh!
So no more pretty staples, Dr. Chan took them out, and I'm glad they are gone.
Still have to limit my fluids to 1 1/2 qts max a day to help keep swelling down.
I called Dr. Hymas this morning to thank him, and I tried not to loose it, but seriously, how do you thank the person that really saved your life??
I mean he4 really did, he saved my life.
How do I go forward and find the way to do something to repay him for this? I don't mean in a monetary way, but how do I put this back into the universe?
I will have the chance I need to find the way and what it is, It will come to me.
No scarf at home, I take things so literally. Keep something on your head, uh ok, 24-7. . .well no, out in public if it bothers me. At home no, it will be nice to not sleep without something on my head, that probably sounds strange, but I guess I'm a little sensitive in general about my head, how it feels, doesn't feel. . .
Sudafed tomorrow, . . . .I'm moving through the "s's" sleeping pill last night, sudafed tomorrow so maybe some of this ear fullness, popping kind of feeling will move on...little things that make me happy.
Hey 2 MRI's instead of 3 tomorrow, then Hannah's party. I hope she has a great time and I hope everyone likes the taco cart. I'm excited.

wow. . . .

I slept last night, thanks to lunestra, and cutting down those steroids.
OK, info from Radiation Onc. dr. a little much yesterday. I guess it's a combo of tired/wired, TMI and trying to digest everything.
So my plan right now?
Gonna call James, James James the man who can, he can do anything he can get you that scan. Poor attempt at a rap!! guess I need to add that he's a bad and that I'm a poor attempt for a rapper. Maybe a poet! ha ha
speaking I guess just about me, since hey, it is all about me right? I see the neuro today and see if he's removing some staples. I thought a little soon, but Dr. Miller said they may come out. shit, I hope that doesn't hurt!
Then tomorrow I'm having an MRI of neck and spine and that area. We do this to make sure nothing lurking around there, and I believe I will be clear. I know i will be, way too much trouble to cause around here!! Ask my friends!
Ok, so the cleaning goes on, wow, what does a girl gotta do to get her house cleaned, wait does that sound like I'm saying something else? No wait it's the brain surgery.
Leslie, Where is your half of my brain please??
Wow ok James is the man, got my Scan going for Monday, time to light me up woo hoo.
Hannah safe and sound from grad night, no major drama, for a change!
and for now, I think this is good. . . .

Thursday, June 3, 2010

ok, , , ,

so lets get this show on the raod right?? My man maid is a shampooing fool! the carpet that is.
Radiation Dr. today, need to schedule a body scan too, and neuro tomorrow...woo part??
Hannah's party on Sat.
So some COMFY slippers, makes me feel like I'm walking on clouds and Donna's soup, ok it's pretty goo
Eric and I are going to the party store, need a few things and it feels good to feel like things are somewhat normal.
The only thing bugging me? I don't really think about someone had like opened my head, but I think about stupid things like, can I sleep lying down instead of trying to sit up at all night, so guess what? I can't sleep. I know this much, I am getting something today to sleep, I'm on 75 mg of steroids...hey me an Arnold right??
Hannah has grad night tonight, I know she will have a blast. She is stress this am about her ap calc test, but you know, she will do the best she can do.
And even more exciting news?/ Her housing info came today for College, OMG here we go I am so excited this is going to be AMAZING!!!

Wednesday, June 2, 2010

I. . . .

am so hungry! figures...ok can't wait for some lunch. Hey this is exciting news....
Yeah, so I guess had we gone ahead with head mri this am I would have bought the machine. that or it would have pulled the stapes out of my head. May not have felt too good.
OK, Hannah's party on sat...yay I can't wait the taco cart lady just called and confirmed, and I am so excited, plus I have a man maid...Eric only he won;t wear one of those little uniforms! damn it all.

Tuesday, June 1, 2010

what. . . .

a whirlwind...Brain surgery on Friday, had been feeling bad for about 4 weeks, pain in my neck using ice and heat, pain pills muscle relaxers, I think my family thought i was crazy. They come to find out that I had a 5.5 cm mass growing in my head. They felt horrible, I feel horrible, I love them so much, I can't even put into words how i feel. What would I do without my Baby and my Bubba.???
I don't even remember Friday night. Apparently I had an mri of my brain, and came out throwing up, I told Eric he was crazy, he said he sat and held my hand through it. I don't remember. I have been really lucky, I've felt no real pain, no numbness, no tingling... Just some weird eye stuff going on, but that's to be expected as I have brain swelling...hello, just had brain surgery.
OK the nurses at Los Robles were nothing short of amazing.
Got the whole dr thing going on now, the rest of the week. . . .
Best thing right now?? Hannies party on Sat, she is excited, I am so glad. I didn't want anything to spoil this for her. and Graduation on the 10th, I can't believe it.
Jimmy and Debbie, I can't even thank you enough. I love you both.
Leslie, Mommy in charge, you have come to my rescue again, you are an angel, I love you.
Diana and Lisa, thank you I love you. I feel surrounded by love and healing light and prayer.
My girls, thank you for the text's and the visits in the hospital