Friday, December 9, 2011

UGH...

feel like I am going to puke for a change.
The gift that just keeps on giving!!
updates:   I have yet another UTI, all these friggin steroids really seems to compromise my system.
Doses are up which is what is making me sick to my stomach.
I know I still have swelling in my brain, and I have an MRI in about a week.
I'm just tired of feeling like shit and crying all the time.
I am somewhat joyful and really looking forward to Hannah coming home and Christmas...
Jim and Debs on Xmas eve, and brunch-lunch at Joyce and Phil's on Xmas day.
I am also looking forward to the BC group lunch, so there are good days ahead and things to look forward to.
What is amazing to me is how I have connected to people that you would never think you would.
The Starbucks lady at Albertsons, the two meat ladies, a couple of checkers, I always get hugs, it makes me cry every time!
So I am in baking mode and hopefully can get these cookies done and over to them, they brighten my day and I want to do something nice for these ladies.

Monday, December 5, 2011

OK. . . .

I do not like the fact that fucking google changed this blog format. Like I don't have enough problems as it is. I keeping looking at this trying to figure out what is different, why they messed with it and why I can't change my email address to my gmail acct...which is sionna1jg@gmail.com Fme! Ok on with whats going on with my brain or lack there of! I had an episode last week, had paramedics take me to ER which I don't remember, Eric and I got home at 3:15am, don't remember that either, so yes back up on the steroids, changed other meds as well and just feeling fucking dandy. Until I adjust, once again, I'm crying and I seem to have some little weirdness now going on with my left hand other than that??? Trying to get out and be as normal as I can...what ever that is, I mean what is normal? In my case it's more Abby Normal, lol But seriously, enough already!

Friday, November 18, 2011

I. . . .

Am upset about my memory, or lack there of.
I never had this problem and it really sucks. I can forget mid sentence what I'm saying, or if someone says something while I'm talking I'll forget what I was saying, or wait the best part, I write it in my calendar book and then forget to look at the book, oh and we can't forget the ever popular excuse well it's OK Judy, you had brain surgery, radiation and four gamma knife's and yeah some kind of seizure over the summer when u lost one week in the hospital. Don't be so hard on yourself....
Well u know what I say to that? F that! That's what I say.
Here I'm thinking I'm doing pretty good then I get these "reminders" but maybe this is pre Alzheimer's only difference is I know I can't remember something instead of not remembering and not even knowing about it. Ugh does that make sense?
It does to me but then again, I'm a person of very little brain these days.

Thursday, November 17, 2011

We. . . .

were talking about Gabby Gifford's last night, and not that my brain stuff has anything to with hers, and let me say her recovery is nothing short of amazing!
One thing they were showing and talking about is how music really helped her as well, for her it was the singing part that helped with her speech and words.
For me much different, but music has a therapeutic effect for me. I don;t have an ipod but I am lucky enough to have an ipad, which I believe has really helped me.
The music part is great because I can put on my headphones and just plug in and I feel happy, it puts me to sleep sometimes, or I sing, all that matters is the how I feel.
The other thing that has really helped are the couple of games I play, I honestly believe that has saved me too.
I have to focus and think, that too is important with all this brain stuff I'm still going through.
Music and word puzzles, who would have thunk! (no I don't work for apple)
I just want to say that I'm having better days, still have my moments, but nothing like before! thank GOD!!

So Saw Dr. A yesterday, we are tapering once again, YAY!! and I am cutting down to two pills a day, 2 mg now from 4mg., he wants me off of them...so do I!
so as long as there are no problems then the plan is after Thanksgiving to call him and we will cut down again...If I have problems then back up.
Praying for no problems here....nausea, dizziness and headaches none of those.
Then next brain MRI end of Dec, gotta get that freebie in since I have deductible met..(and then some) I love the end of the year! haha Hey, thank God I have insurance!
So that's about it for right now.
Ahh instead of Ugh

Monday, November 14, 2011

So. . . .

little sleep last night...jeez this is getting old!
I'm walking so I know I am getting some exercise, but honestly UGH!
Gonna bake some brownies, that should do it, or maybe undo it.
Eat a salad for lunch, then eat brownies..haha, it's all good!
Dr A. this week, I'm sure we will schedule a Brain MRI.
It's all kind of surreal, what we except and how we carry on, but really what choice do I have?
So I am trying to get back to where I was and I feel like I'm getting there so that's a good thing.
Sometimes it's hard to feel good about yourself when you feel like you don't quite look right. My face is still pretty swollen from steroids, and there is really nothing I can do about it, but I notice people looking at me sometimes. I want to ask them what the fuck are you looking at, but I guess that sounds a little angry..oh well...
Maybe I'm being a little sensitive???
(who me??)

Friday, November 11, 2011

JUST. . . .

Another one of those nights where I was up most of the night. . . . so much for beauty sleep. The Mj does help, maybe I should use more??
Still have my lump, right now it seems to be about the same, so I am just checking it.
Had tumor markers done so I think I need to call and get results.
hmmmmm

Wednesday, November 9, 2011

FEELING. . . .

Pukey this am.
That about sums it up.
Supposed to see Dr. A this am, don't feel like going, don't feel like doing or going anyplace.
I hate waking up and feeling like this!

Monday, November 7, 2011

Ugh. . . .

That's about all I can come up with right now as to how I am feeling.
Been feeling okay, but just kind of "ugh". Does that make sense?
I'm supposed to go to a volunteer interview today, which I have been looking forward to, but today I don't know where I stand with everything, and not completely sure I can do this right now.
I've been feeling pretty good, but still have days when I am dizzy, lately I have this swimming feeling in my head, kind of behind my eyes and the only thing I think of is that I still have swelling and I see Dr. A this week, my guess is he will up my steroids, and maybe we should just do it and get it over with, so this swelling goes down.
I just need to suck it up
Bottom line, I like the idea of volunteering, but I just don't think I can conform to a schedule at this point.
I can't even get on a regular walking schedule.
I just feel like a mess today.
So I've rescheduled and going to talk to Dr.A about it and see what he thinks before I make a final decision. I think that is the best move for me right now, gives me a little bit of time and then get his feedback, not even sure when my next MRI is,
I am so sick of this!

Friday, November 4, 2011

ANOTHER. . . .

Up and down night, all night, oh well and I have a crap load of stuff to do today.
Been thinking about Christine lately.
Especially since paranormal just came out w/ a new release. She would have insisted that we go see it, so we could sit and laugh and then talk about how stupid it was later on.
I really do miss her, and it's been about a year since she passed.
Sometimes I think if not for her I don't know how I would have made through all that disgusting chemo.
We would sit there and just laugh, tell jokes, talk about the hoarder show on TV and the old people getting chemo would just stare at us like we were crazy.
But honestly, that's how you make the best out of a bad situation, laughter.
I can't ever forget the time we tried to escape while still attached to our chemo poles. (iv's and all)
We made it to the door, and were heading down to the pharmacy for a candy bar and something to drink...Yes, my idea. but we were caught and then labeled Thelma and Louise, and told to never do that again. Poor Dr. K, thought she was going to have a stroke.
Christine and I just clicked, and we understood each other. She had been through so much more than me. She had uterine cancer, and already gone through chemo, and had several surgeries at that point. Talk about strong, and again I believe she was an example for me in some ways.
I miss her and having a friend that truly knows what you are going through really makes the difference. Even if we didn't see each other that much we would text when she was up to it. She was in and out of the hospital so much towards the end and I am glad I was able to see her and make her laugh.
The hardest part was when she asked me what she should do. Keep on fighting or just go with it.
Talk about a heavy conversation. I didn't know what to say at first, but I won't forget it either, I asked her how she felt, was she tired what did she think about the choices she had. She could not do another chemo. She had so much going on cancer wise and I think it was just too much as she passed quickly after our last visit. Glad I saw her.
I thought writing a little about her would make me feel better but right now it just makes me really sad.
Gonna be one of those days I guess, and well it's OK.
Next week I have an interview for some volunteer work, so hopefully that will work out because I feel it will be really rewarding and good for me as well. See what happens!

Wednesday, November 2, 2011

UP. . . .

All night! at 10:00 I thought it was 12:00 at 11:45 I thought it was 3am...at 3am I thought it was 5, and it is so windy I thought our deck would blow off the house. So tired !
At 5 I was so pukey, not sure what that was all about but it seems to have calmed down since then.
Thought for the day UGH

Monday, October 31, 2011

IT'S. . . .

Halloween!!! That means Thanksgiving is almost here and Hannah will be home soon!
Me, I'm cleaning my house, so I must feel a little better right? that or my house is a mess, or a little of both. (that's more like it)
So sleep wise, last two nights only woke up twice.
Yesterday I was really crabby and had some balance issues both on Sat and Sun and I know I still have brain swelling so I am going to have to call the Dr. this week and prob go up on the roids...here I go again. F me, I hate them.
So I went to this Qigong class on Sat., at the wellness center, it was interesting and the I guess I was the youngest person in the room.
There is another Qigong class on Wed. I may try that, and see how that one is.
I really want to take Tai Chi and the Y offers it but you have to join and it's like $45 a month after you join regardless of the number of classes you may or may not take... Hmmmm
gonna need to see about that, or maybe park and rec offers???

Friday, October 28, 2011

OK. . . .

Had tests done yesterday and the radiologist said he saw no changes in the breast tissue, no cancer, just possibly scar tissue or changes due to radiation.
I asked him, if you see no changes than what the hell is this lump?
He then says, well if you don't like my findings, then go have an MRI of the breast done. What an ASSHOLE!!!!
So we spoke with the Onc., she said lets watch it real close and if changes let her know asap, if not we will see where I am in about 2 months.
I can live with that but I will be watching this thing like a hawk.
So, wtf ??

Thursday, October 27, 2011

ALMOST. . . .

Time to go for mammo and ultrasound.
I just of sort have an empty feeling about the results.
Eric and I talked about this a lot last night so we could prepare for outcome today.
The thing about this though is Eric, Hannah and I all feel we know the outcome and that the BC is back, so. . . .???
Off I go

Wednesday, October 26, 2011

OK. . . .

Not freaked out about anything, just gonna do what I got to do here.
If it is then we go from there, I'm not speculating however I have thought about what I will do if it is, but I just need to wait until tomorrow and then we will see what is what.
So what I decided to do here is make my 1st apple pie. I mean isn't that what you do when you just don't know what to do? Bake, that's what I say.
And I have a shit load to bake for holiday gifts, but I haven't started that yet. gotten the stuff, well most of it, but gotta get going and clean out the freezer for some room.
This will get done no matter what happens with my body, baking takes my mind off of things and I got a cool new toy, no not a new mixer, although I could use one...
Hoping for a good day, so far so good, had Pumpkin pancakes with my Julie, came home and vacuumed needed to finish up some cleaning, fun stuff!!
Just need to keep busy today!

Tuesday, October 25, 2011

TWICE. . . .

In one day? Wow I'm impressed with myself today.
So I decided to call my Dr., and I went in and yes, I have a lump in my right breast, this time on the right side at about 10:00. (last time was right breast but on top)
She thinks it's a cyst because there is pain with this, but there was the last time as well.
And when I had the mammo that found it back in 2009 the tech said, oh its never cancer if you have pain...Well hello, I'm living proof that that's a bunch of shit.
Not that I want it back, but when I have read tnbc forums, there is pain w/tumors with this type of bc, doesn't behave like other types.
I know Dr. K didn't want to worry me, because after all, I am the steroid queen and tears come in the blink of an eye. But what good would that do me?
So we wait, see what it is and deal with it then.
Be strong, get trough this, and show Hannah not to be afraid, that you can conquer your fears and move forward however you need to.
She gets it, but is still upset and worries. I wish I could take her worry away, but she has to process this in her own way as I know she will.

Maybe that is part of the Journey I questioned at the beginning of all of this.
Something here to learn and grow from, not to be fearful or afraid, help someone else get through this, and to try to set a positive example, but most important, have a sense of humor which I like to think I do, because that is really what saves you in the long run.

And lastly I have to take this damn Qigong class tomorrow, I think that will make me feel better?? well at least make me sweat, like I don't do that already. HAHA!
speaking of which, I cleaned the bathroom, did laundry sheets...everything due to the pink eye exposure...made a chicken salad and am going to the new Butt Dr. and when I get home I'm going to figure out how to make an apple pie, but I think I will make it tomorrow so I have more time... Fuck Cancer!

PINK. . . .

Is a great color, especially in my eye.
Yes, it's the month of October and to finish off the month I've gotten pink eye.
How appropriate.
What more can I say, except that I'm washing pretty much everything because who knows what I touched, and I kept rubbing my eye yesterday.
Eric comes home takes one look at me and says, "you know you have pink eye?"
So thankfully My Eye Dr. called back last night and I got yet another RX, but at least this one goes in my eye, not in my mouth.
And just to be paranoid, last night I thought I felt something, I think it's time for a mammo just to be sure.
I need a vacation!

Monday, October 24, 2011

SO. . . .

I woke up only once last night, but this am when I got up I felt like I was going to puke.....once again. So tired of this, and just hoping I don't need to go up on steroids, Eric thinks I will. I'm thinking it's gonna be the plan B, Slurpee straw thing, I hope to GOD it's not that because I don't think I can handle another hospital stay besides drilling into my head.
The thought of that makes me want to puke, besides scaring the shit out of me, I just don't want that option. I'll end up with another visit to the hospital and well, that's just not going to happen as far as I'm concerned.
I'm fighting this shit, but this part is just so hard, and really out of my control.
So I started taking some Turmeric tablets which are supposed to help w/inflammation and I need to do a bit more research on shitake mushrooms, or the tablets which are very expensive (like over $50 a bottle) but apparently also good with inflammation, at least that's what Dr A. says. We did read a study that Yale had done, interesting read, but who knows.....

Sunday, October 23, 2011

YAY. . . .

It's Sunday and that means I can spend the day with Eric. He's not working today (for a change) so we will see what we can get done since my energy seems to be picking up, due in part to the up dose with the steroids. Sleep wise, only woke up once last night and that is nice for a change, maybe I'm going to start sleeping?????
I drove down to San Diego yesterday for the alumni game, always fun...not serious and our coach is the ref and it's a fun time. We had like 40 alum there, at least that's what we counted, and since i wasn't doing the counting I think the number could be correct. haha
Anywho, was great to see everyone and the hugs were great! Was so worth going, to get outside and laugh, just had a great time.
So looking forward to the season. (nice to have something to look forward to)
So far only one Dr. appt this week, with my new Gastro, and I'm actually looking forward to going, I need to get off of this one drug I'm on because it is a chemo drug and Docs want me off it, so hopefully there are new meds just for UC that will be better for me. We shall see

Friday, October 21, 2011

RESULTS. . . .

Are in....
Went to Dr. yesterday which was good because I didn't really want to go by myself.
So lets see, I have no new tumors and it seems that the last Gamma zapped the sucker and so it's gone. That's all good.
What is not so great is that I still have a lot of swelling so that means back up on steroids, up to 2mg a day now, and I'm not thrilled about this but right now that's about all I can do for the brain swelling.
I still have blood in the original cavity, and this is due to a brain bleed I had from being on blood thinners. Seems when you have a brain tumor you can get brain bleeds and that's what happened to me...(along with the fucking blood clots)
This truly is the gift that keeps on giving.
So back to Dr.A in a couple of weeks to go over how I'm feeling medication..blah blah blah, but not another MRI as it will still show the same thing.
The only other option here for me is to have surgery where Dr. C will go in and remove the blood, which will then get rid of the swelling. He does not know why my brain is not absorbing this as it should have.
It would figure right?
So I imagine Dr. C taking a little tiny drill, drilling a whole into my head and then stick some kind of Slurpee straw or something in the hole and then just suck it out, or something along those lines....
Probably not a Slurpee straw, but if I didn't try to make fun of this I wouldn't be me right?
Do I want to do this? Fuck no, am I going to have another option?
Probably not.
So my guess, it's going to be plan b the hole in my head thing, and yet another hospital stay. I'm just guessing here, but that's kinda what I'm thinking. Not leaning towards but it may be out of my control in options dept. that is.
I just can't believe this all is happening, it's been a rough ride this round.
I'm calling it round 4 because of the 4th Gamma
I'm not trying to feel sorry for myself, but once again, more emotional due to these steroids and so it goes! I just want this over with.
Ain't this fun, see I know how to have a good time.

Thursday, October 20, 2011

SO. . . .

Yesterday was the MRI, and I seemed to be having technical difficulty with the dressing room door like I did a couple of yrs ago when I got the gown with the three wholes, and when I tried to get it off I almost went crashing through the folding fan type door thing with a shitty little latch.
So yesterday i get locked in when I change for the MRI... I'm yelling hello, hello and pulling on this fucking door, finally it opens and good thing because no one came, I'd still be there. . . .then I get the dumbshit tech "boy" that I can't stand, he starts arguing with me about putting the cath in my arm for the contrast, I tell him, I've been doing this here longer than you've been working here, I know how it goes and Christian is taking care of it, still talking...close your mouth now and go away...still talking.... wish i could have said that to him, but he did go away, and all went fine.
Just results tomorrow.

Wednesday, October 19, 2011

CAN. . . .

Hardly wait for today's MRI. This will be the first time I am going to have a test done and am going by myself. And it's not like I can't do this on my own, but you kind of get use to things going a certain way and then if you change something, other things change as well. So I'm saying something without saying what I'm thinking because I don't want to jinx myself here. Silly huh?
Even though we've cut the steroids down to 1mg I still can't stop crying every time I feel a little upset, but the good news is I don't feel like I'm being so bitchy, which is really good.
I still can't sleep the whole night through, was up at 12:00, 3:00am, 5:00am, did go back to sleep and slept till about 6:45am, so a little here a little there, thank god for the Pot and I've got to get more.
Back to steroids, so I forgot this part. . . when you taper, at least for me, I experience a whole set of aches and pains that I didn't have before. Like yesterday my tailbone started hurting, so I slept with heat. I still have the beautiful fat face syndrome, I hate that too!!
I was planning on taking a Qigong class but I am sore and don't feel like I can do it today....so hopefully next week
So that's about it on that front.
Sat I am supposed to go to a lunch thing, and the ladies are a triple neg survivor group. They meet 1x a month I think, I am planning on going, I think it will be good, so I had better wake up feeling good!!

Saturday, October 15, 2011

YAY. . . .

It's Sat. and that means Han is driving up (for one night) but it will be great to see her.
Saw Dr. A yesterday and the great news is that I will now go down to 1mg. of steroid, we will review how I respond to low dose and if all goes well, possibly off all together next week.
Keeping my fingers crossed on this one.
Brain MRI Wed, then Dr. A on Fri
And just to vent, cuz I'm really pissed, I had started this meal sign up sheet for our team, and it's pretty involved, all the games times, etc, etc, put it on an excell sheet and it's GONE. Fme!
So I can do one of two things here, cry...like I don't do that enough for no reason, suck it up start over, don't do it, or??
I'll just suck it up and start over. Not like I have anything else to do really, except go to the Dr. Fortunately I've got a lot of time, but I will finish the schedule today since some families are requesting games already. We've got some great parents that help out on our team. They're awesome!!!

Friday, October 14, 2011

OK. . . .

So, I've been up since 3 am., and at 4:30 I asked Eric if he wanted me to make him breakfast.
He's like what time is it.....can I please go back to sleep for an hour? So I made him these gross pumpkin pancakes at 5:30..before he left for work. He liked them I thought they were nasty.
What the hell do I know, everything tastes salty or not right, so most of the time I don't eat it all or just skip meals. Now if I could just get the steroid face swelling to go down, but I don't think it has anything to do with weight loss, and it's not like I'm trying to not eat so I can loose weight, I just don't feel like it most of the time. I'm so fucked up!
When we go out to breakfast, the server knows what I want, and I'll get 1 slice of french toast and a chicken sausage patty (which is good) I'll end up eating 1/4 of the french toast, and the sausage...that's about it. So I'm super hungry when we leave home,then we will order, but then I just can't eat it after it arrives.
I usually end up making 2 pancakes at home so I can take the pile of pills that I love so much. yeah going to the Dr today, maybe we can get something cut down or changed.
ugh!

Thursday, October 13, 2011

EVEN. . . .

With a pocket calendar I can't keep it straight. What a friggin idiot!
I write on my calendar, then the pocket one and put everything down twice or on the wrong days, then I get mad at Eric like he's the one that did it.
Maybe he did and he's really just trying to mess with me. haha
I need that like I need a hole in my head, Yeah I've already had that once and don't want to revisit it...the hole in the head thing that is....
So we are thinking that one of the meds is making me sick. . .happens to be one of the side effects so we may be changing it. . I didn't take it last night and I was good this am. that would be a durrrr.....
So yeah,tomorrow Dr, next week: MRI two Dr.'s
I'm just so busy with all of this fun and exciting stuff going on in my life!

Wednesday, October 12, 2011

UGH. . . .

So tired!
Seems like all I am doing here is complaining, but the fact of the matter is I am still really pukey when I get up, lasts for a few hours, was up 5 or 6 times last night.
I didn't go to the blood clot Dr., and the gastro is calling to remind me of an appt next week that I have to try to change. . . .
Lets see: moved my brain MRI to next week, instead of Nov. I will feel better once we have a look in there.
I'm still unsure what if anything is going on, but the bottom line here is I am SICK of going to the Dr.
Was going to take a class this am, but I couldn't go because I felt really sick, I just don't remember This kind of stuff happening before, hmmmm.
What I'd like to do? go to the beach tomorrow with Eric, so we will see if we can work that out, would be really nice to go and do something even if it's sitting around at the beach. we'll see

Monday, October 10, 2011

SO. . . .

When you don't sleep all night and keep waking up up what do you do? Well what I do?
I get up at 4am and take a shower, because I don't know what else to do at 4am since I can't sleep, or like last Sunday I got up at 5am and gave both dogs hair cuts, seriously this is interesting stuff here. Just can't remember what it's like to sleep through the night.
Today I get to go to the Dr. and see if he has read the results from my last test which should show what the hells going on with these blood clots in my leg, I'm off of blood thinner because I've had a brain bleed so who knows.
I'm just sick and tired of all of this. Pretty much every morning I wake up with a morning sickness type of stomach, only way to describe it. talk about yuck!
And I've got to get off of these steroids, still making me crazy.
the littlest things REALLY upset me, I try to control what I'm about to say, like think before you speak kind of thing, it works sometimes, but not all the time.
My biggest worry here?
That I can't get back to who I was, not how I am right now, Eric said he thinks the radiation had some kind of affect on this.
The Gamma knives I've had, with the exception of the last one, was really to radiate the cavity where they took the tumor out. there was a small tail, or something they zapped, but this new one from what I was told, the one that had doubled in size in a couple of weeks, was the first tumor that was treated solely by the Gamma, and I think it went beyond just the tumor, I don't know, maybe not, but Dr. A said he saw changes which are due to the whole brain radiation. what the fuck does that mean?
And honestly, sometimes I just feel like I'm done and I want it all over, I'm tired, feel no joy and honestly, sick of having to second guess everything right now.
Just where I'm at.
And I go to the Dispensary yesterday, there had to be 50 people waiting to get in, this should be interesting as they start closing down these places.
Maybe had the fed gov regulated this to start with and set up some structure we would have all these stupid ass kids buying pot, and really ruining it for those that need it.
Frustrating....
Just the frame of mind I'm in today...and lately as well.

Tuesday, October 4, 2011

YUCK. . . .

Pretty much sums up how I feel when I wake up.
Still this morning sickness type of feeling and I'm just not sure why. So doing what I can to get rid of the nausea.
Sleep wise, about the same, still waking up and not sleeping through the night.
I think something is growing back in there and I need to change my MRI, like move it to Oct, but gotta check w/Dr first.
He told me my symptoms show up before the tumor does, but something doesn't feel right
Just a feeling that I hope is wrong, I'm getting pretty tired of all of this.
Other than that, like that isn't enough, at least I'm not feeling all "roided" out and that seems to have calmed down, but need to find out if I need to cut in half again, go to 1mg.....
What I'm looking forward to? Seeing my Han on Sat., I can't wait

Monday, October 3, 2011

EACH. . . .

Morning I have been waking up and feel like I am going to be sick to my stomach, it's just like having morning sickness only it lasts longer to go away...UGH!
every so often a slight headache, but I'm thinking about calling my Doc and see if he wants me to break the half of steroid in half.
everything seems to be about the steroid with me still.
My face is so bloated and swollen still.
I am really self conscious and sick of people looking at me, so with the pink spotted hair I figure they will look at that instead, then that gives me the change to tell someone to get a mammogram. . . .like they would listen to me!
But honestly, I love my spotted hair, kind of fun and just for October.
Watch, I'll get called for a volunteer interview, haha
Other than that, I'm excited to have some team stuff to put together for game/food sign ups.
Gives me some purpose and something to do that I like...
With any luck Eric and I will drive down and see Han this Sat., which will be really nice and since I'm not so bitchy should be good all the way around!
Now gotta see if I'm making cookies or granola or? maybe nothing. . . . .

Tuesday, September 27, 2011

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!

Monday, September 26, 2011

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. . . .

Sunday, September 25, 2011

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!

Saturday, September 24, 2011

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

Friday, September 23, 2011

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

Thursday, September 22, 2011

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!!

Sunday, September 18, 2011

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?

Saturday, September 17, 2011

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!

Friday, September 16, 2011

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.

Tuesday, September 13, 2011

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.

Sunday, August 14, 2011

So. . . .

Where the he'll do I start here?
Yesterday I couldn't get on so I'm a day late, but not to worry because the fun never stops here!
Ok, last week we go for a walk I pull a muscle in my leg...right? Not a quiz...
Yesterday, I decide to go get a gel manicure....guess what's coming?
Yes!!! A new song, it's called when face meets pavement. Kinda like that one that is called when soul meets body.
Well, us girls just couldn't have enough fun...breakfast, then my idea for the mani...we were laughing and I didn't see the two inch step that apparently I tripped over ( 6th person this month) last lady broke her hip...so I guess I am lucky, stupid, idiot, working with one half of a brain, um.......
Oh well, nothing is broken, Eric didn't yell at me, Hannah was upset that I fell, but shit happens and I have to be more aware of my surroundings right now. Uh, yeah.
Today I may sleep considering I did not get too much last night. Sleep that is.
Another day .... Hey at least dinner is in the fridge so I don't have to think about cooking anything and....Hannie comes back today. She's been hanging with ally all weekend and I am so happy she's got some great friends, I think happy doesn't even quite say it all, but it's good.

Friday, August 12, 2011

The update. . . .

Without looking at yesterday....this is what I ate...little tiny cini buns that Iko gave me at gamma, about two bites of a salad two bites of garlic bread...then dinner spoon full of pice slice of pita and a bite of chicken....nothing tastes good except for that cinne. Mini.
Sugar sugar sugar.
Now.....
I take a small drag on my vaporizer, start coughing and spring a bloody whole in my head. Swear to god.
Eric looks at me like I'm some kind of freak, I mean I have like one hundred little tiny band aids all over, what will they really stop?
Is it like putting your finger in a tiny little whole to plug it up?
In a way it's kind of funny. But I guess it wasn't to look at.
Think about it, ur out to dinner, u sneeze or cough all of sudden u have a Frankenstein thing going on ,right there on face....uh waiter....could I have a really big towel please.
Yeah, having a good time .

Wednesday, August 10, 2011

Ok. . . .

I can say what ever I want here. Get this fucker out of my head

Tuesday, August 9, 2011

Today. . . .

I felt good this am, but feel like crap now. My leg hurting still, a tiny bit better, but need the arnica rub. I had to fire Eric the Suez chef yesterday. I hired him back, so we will see how he does today!!
I still can't seem to get all of straightened out completely, but I'm hoping after Thursday things will get a little better.
Planning on having b.fast with Cathy when she gets back. That will be nice.
Just want to get on with this already, I hate waiting....grrrrrrr

Monday, August 8, 2011

So. . . .

Who pulls a muscle in my calf taking the worlds shortest walk yesterday?
I felt it but thought no. Big deal. Could barely sleep last night, so got some arnica gel, see if thc helps with the swelling, said it should...no motrin or advil here, so . . . . Hopefully this will all work.
Did I happen to say that I am so fucking sick of all of this!!!!

Sunday, August 7, 2011

A. . . .

Little better right now. Had a little bit of a sandwich, took more drugs but best of all, no headache as yet, and I am hoping not at all today.
Took a tiny walk, and maybe will try again later, if not in the am.
Hey at least I haven't asked Eric what day it is for a change, so maybe the swelling is going down and have not felt wobbly today.
Like I said on my fb, I just want this thing outta my head and I wish I didn't have to wait till Thursday.
Jimmy will come on Thursday and that will be really good for Eric, I am glad he is coming too. No crowd, just him, perfect. When all this shit is over I will cook for those I promised before all this shit went crazy!
Dr.Ahn said something really interesting to me, he said my symptoms seem to come before the tumor, they don't know why.
They don't seem to know shit about shit when it comes to brain mets. At least he doesn't...why I want to see dr. Miller.
So we will how it goes, and actually I will ask neuro dr. Chan on Thursday when he's torturing me with that halo thing he's gonna screw into my head.
Fun stuff!

Saturday, August 6, 2011

Thought for the am. . . .

Luniesta or mj for sleeping at night while on all these MEDS?..
The mj is better , got myself a little groggy hangover this am, not enjoying it at all.
Hope it passes soon.

Friday, August 5, 2011

This. . . .

May sound a little stupid, but in some ways I feel blessed.
Not for the cancer...hello who would be, but the amazing friends I have made.
One said it is rare at our age to make these kind of life long friends and I do believe this as well.
Most of the time I feel like my Dr.s are idiots, thank god my friends ae willing to listen, I hope I am not driving them crazy, I don't think I am, but sometimes....well you just want to be sure.
Today is third day of upping the steroids and I feel a tiny bit better this am, so let's see what the day brings.
Keeping a positive thought and if I can keep from saying something snotty to anyone here I think I will be doing OK.
Speaking of stupid Dr's. I sit in the office yesterday, having a big melt down tears flowing and he just looks at me. Wtf? Is this a Chinese brilliant Dr thing or just him? Most of the time he just looks at me like a deer in the headlights kinda look. Why I love love dr. Miller, I know dr A is the gamma god, but a tissue, a hug, anything?
Even my Chinese Nero surgeon will let me hug and cry all over him and he hates it, but after all, he did have those amazing hands in my head a little over a year ago....so like I said yesterday on fb....UGH and yeah that says it for right now.
Still waiting to hear back about when we are going to blast off, so hopefully cherry can get this done today since we want to schedule for next week. The thing doubled in short of two weeks, so it's growing fast....once again

Thursday, August 4, 2011

If. . . .

You don't want to read about the idiot I experienced last night then don't read this.
Why will medical mj never be legal in ca? Because of the stupid people that call themselves drs. What a fucking idiot this guy was.
My radiation oncologist even suggested I go get some to help with nausea, etc....my card had expired so I went to go renew. There is one place in t.oaks that does this, where I originally went, so I went back. But it was strange because this time the dr. Was old and white, not young and black...ok maybe they're brothers from a different mother....right?
So he says I just want to ask u a few questions, mind you he has my entire file in front of him.....we are taking current
What's the date, who's the pres? Who was the last one, the one before, the one before that...some stupid bill Clinton joke, then do u have dogs, do u walk them, no u idiot I just got out of the hospital, well don't they like to walk, yeah and I'd like to eat without feeling sick to my stomach...
What do u do for a living? Ok stand up and touch your nose, stand up on one foot, that's when Eric said no.
Well I was just checking ...write the fucking letter so I can get out of here...there was more but I'm sure the point comes across.
The mj really works, we need it, we can use the revenue in ca but what do we do about these idiots???
This was just a mini rant...prob would have been better to write last night, but ......

Wednesday, August 3, 2011

Usually. . . .

I think most things are funny, but I don't seem to have much of a sense of humor these days. I still feel like shit, crabby, bitchy, the works.
Will I ever get back to who I was?
I fucking hate this!

Sunday, July 31, 2011

Still. . . .

So tired. Trying to take a nap but no luck. Threw up in car this, that was fun, did go watch girls beat sdsu, that was nice to see.
I just want to be over this, feel better and not be sick anymore but I guess that is not a part of my journey. Don't really understand this and I guess I'm just not meant to, but I can't seem to get over this mini pity party I've been having so I hope with another good nights sleep it will pass soon.

Friday, July 29, 2011

Ugh

Ok, went to bfast with bubba and still couldn't eat. Tried a small jamba, two sips upset my stomach.
Gonna try a choco shake...that should do the trick I think....I hope...
It better, it will. Yeah

Thursday, July 28, 2011

Today. . . .

Has to be better right? Been up since aBout 2am....watched tv then slept for a couple of hours. This is so hard feeling like this.
I've felt crappy before but I can't get back to feeling like myself and this is so hard for me.
The MEDS
make me tired and crabby, not hungry...everything tastes too salty now. I just feel like crying...again

Wednesday, July 27, 2011

Is. . . .

It Friday yet?
So tired and crabby today. I need to get a good nights sleep.

Tuesday, July 26, 2011

So. . . .

The bastard that fired me last year has not done a damn thing he has been waiting for me to die, piece of shit I,m not going anywhere

It's. . .

A big yeah today. That's about it. I just want to feel like I did before, I know I said this yesterday but truth be told, I just don't feel good n my skin.
Sigh

Monday, July 25, 2011

Ok. . . . I,m back

I don't even know where to start. It seems that last week inhad a seizure and ended up in the hospital where I lost nine days. No lie, anint brain cancer just grand? Having another MRI on Monday then results on thursday, but what it appears to be is new tumor which will mean Yeats another gamma knife, and incan totally do it. I don,t want want to but I will do what needs to be done. How do I feel?hmmmm no appitite not the worst thing but I,m pooped and just trying to feel like a normal person...what ever the he'll that is.
So I,m in icu at hospital and this little 20 yr old bitch of a nurse doesn't like the fact that igot out of bad and kept asking for a phone to call my husband, next thing I know she's on top of me and we are going at it. I,m so gonna get her. Oncology floor way better nurses great, care just so much better...like I said once I feel up to it I,m taking her out.
As for now so tired gonna go to bed soon. It's like 6:40 pm

Friday, May 27, 2011

Well. . . .

tomorrow is the 28th of May.
It's been one year since we discovered the golf ball sized tumor in my head.
I type this and look at it and it's like it doesn't register.
I look at myself in the mirror, my hair is growing back, I feel along the scar behind and above my right ear. I can feel the unevenness of my skull, it's bumpy and no longer smooth.
So I know that it's all real, it really happened and I'm still here.
What year though!
Before my Eye Dr. found this, I was falling down, throwing up, dizzy, terrible headaches, neck aches, and a weird circle of light in my right eye...I was having so much fun!
Since then, I've had three Gamma Knife procedures...and now I have the lovely pits on my forehead from where they screwed the Halo in or on??
And then the joy of Whole Brain Radiation, now that was fun.
I don't miss my tumor, I'm glad its gone thanks to Dr.Chen and his amazing skills.
The steroids gone, and so are about 30 lbs. thank god!
So I'd say about another 25 lbs will be about right, I'm walking every day and for the most part I feel pretty good.
Just Glad to be here!
Time will tell, next Brain MRI June 13

Saturday, May 7, 2011

Ummm. . . .

It's been how long since my last post?
Way to long.
I'm still here and doing good.
It's just been crazy around here, March was like the month of drs. and tests, and then Eric lost his job after 30years...(the business closed)
Hannah is almost done with her freshman year, and water polo has been? well interesting to say the very least.
But back to me, because hey...it's all about me :P right?
So I had a nasty UTI, didn't even know I had it, back ached all the time, my FP thought it might be bone mets and wanted me to have a body scan, but alas! I just had one in March and all was clear! GO ME!!!!
Next brain MRI is in June, and I am expected things to be good.
I've lost 25 lbs since I'm off those friggin steroids. YAY...so it's 25 and counting, a work in progress.
I'm still not working, I'm on disability.

Am trying to walk every day to get my strength and endurance up, so like I said, all is good and I am grateful, especially as I am approaching the end of the May and My one yr brain tumor..Hello I'm in your head, let me out or I'll kill you.
so yeah I've got a lot to be thankful for.

Well that's it for now

Monday, January 17, 2011

Yes. . . .

it's been a while.
I just really haven't had much to say, sometimes I am just tired of thinking about Drs. and how I feel and everything else.
And there is so much going on right now and I don't want to think about or talk about or write it.
The gift that keeps on giving really seems to be the radiation though.
I used this little scrubbie thing on my head, because my hair..or nubs... keep me up at night. Sounds strange but it rubs on the pillow and my head hurts. . .
Anyway I seemed to have lost most of what I thought was hair growing back.
I mean if it was attached, you couldn't rub it off. Right??