Wednesday, May 23, 2012

WED. . . .

OK . . . . the magic chemo pill that arrives by fort Knox tomorrow is called Temodar,  Only 250 a pill, that's
5 grand for a 25 day supply. we changed ins, need i say more?
new deductible so cost is 250, then 2nd 25 will be 100.  where did the $10 script cost go?  out the fucking window, I know at least I have insurance and I AM grateful for this.
So Chemo and Radiation start next week, oral med this week.
Eric read a lot about Temodar and the results have been nothing less than amazing, my question is why the hell didn't we do this sooner, why put me through second brain surgery, 6th gamma knife if this chemo would have worked.??????
All the trauma to my brain supposedly will allow the chemo to get through the blood brain barrier.
I'm just thinking all this shit better work or I'm really gonna be pissed off!  ha ha

Sunday, May 20, 2012

MY . . . .

Neck and chest looks like something from a vampire movie and it frigging hurts.  I can't really take pain pills because I am slightly allergic...I have to take benedryl with, so imagine my stooper yesterday along with an ice pack  on my neck area and then my heat pack on my stomach for my UC pain.  Radiation and Chemo hasn't even started.  WTF!!  I swear.
We are going to meet some friends for lunchy-brunch which I am really looking forward to, not the food part, the friends part.
I need to try to find something to wear to cover this up though.  I can't get it wet for 5 days, so sponge baths or plastic wrap the whole area....maybe my head along with it.  OY VEY.

It is however a beautiful day :)

Thursday, May 17, 2012

WHERE DO I START????. . . .

OK, so here it all is as of right now Thursday morning.
Hannah is home that's the best.
Tomorrow she gets to take me to have a port put back in.  If I'd never taken the stupid thing out I would have all these blown veins that bruise and hurt but vat can I do?
So wait, Chemo? thought it didn't work with brain stuff because the chemo doesn't break the blood brain barrier, well lucky for me I've had so much trauma to my brain the chemo should get through because I am also having brain radiation again.  Not whole brain, but a concentrated dose in the bad area where my cancer keeps tracking and won't go away.
Suppose to start radiation next week if they can get their shit together and map it out, why does this take so long! So all I know is it will be 5 days a week when ever it starts but I don't know for how long.
Then Chemo, Carbo Platinum or something like that...Can hardly wait and hope I can tolerate it.
The radiation makes me tired, don't know about the chemo yet.  Honestly I don;t want to do this, I'm scared to SHIT, but what choice do I have?
I just want to feel normal, what ever that is, because I don't really remember.
I just feel like crying but I've got to get a hold of myself here....seriously!  Suck it up, and
  now put on your positive thinking cap.  (where did that come from?? some TV show mom)
OK, next oh by the way, we want to take the ovaries as this is a breeding ground for me, they do this laproscopically, maybe I could get my leaky bladder fixed at the same time, I refuse to wear depends!
OK, lastly, you need to have a colonoscopy, can hardly wait for that shit!  ha ha...
Which of course will be after chemo..just keeping my day full of hope and promises and little flowers and lady bugs.  Yeah life is so Fucking Grand right now.  WHEW off my chest, outta my fingers and outta my 1/2 half of a brain

Wednesday, May 16, 2012

GOING to . . . .

Onc. this am, oh boy!!!  We will see what she has to say I am a little confused because originally they said chemo does not break the blood brain barrier, so WTF??
Radiation coming prob will start next week since it's wed. and I haven't heard from them yet.  Like hurry up and wait right? So then Dr tells Eric well we might be able to use chemo like a week after the radiation is done, woo hoo it's gonna be a frickin party in my head..maybe I'll some of this cancer shit outta my head for a change???? who knows.
Trying to be positive but some questions keep coming back.
Am I going to die from this? probably but my hope is not for a long time.
Gonna try some guided meditation and breathe stuff for when I get upset, just gotta load it and listen to it.
We have to do everything we can to fight and stay positive even though this is the nastiest, scariest shit going on.
Well I will post as soon as I find out what the Evil Dr's have in store for me...some new kind of poison I'm sure lol!

Monday, May 7, 2012


So I go to Dr A last Friday and He explains very calmly, but I know whats coming because of the look on his face so tears start coming, yet I have my own tissue....
We did the gamma knife but where i stopped gamma the cancer is tracking.  There was like a fringe around the area, and because gamma can't treat whole brain or big areas as we know, we will need to do brain radiation again.  Not whole brain, but just concentrated and the lining, which has this "stuff"that  will respond well to radiation, so we will probly do within 1-2 weeks.  I 'd like some notice so I can shave my head...gotta go through the Asian pear mask thingie again, then go get a ct of my head, again, this along with my uc flare is just all fun and games right now.
I'm gonna go throw up now