Confusion, Descision (sp?) and a birthday!

[Guest guest]

Hey guys,

I havent posted in a little while. Things have been kinda crazy

around here. I found out a couple of months ago that my 16 year old

daughter is pregnant, now how angry do you think I was??? Anyway, got

past the anger, and I am excited, although still unhappy about the

situation. My CML birthday just passed....five years in Oct. and my

literal birthday is coming up ..the 27th....thanksgiving day I will be

48. I have made a discision (I just can not remember how to spell that

word!..lol) I discussed it with my kids and husband. I have been off

Sprycel for about five months. If you remember our a/c went out and we

couldnt afford to fix it or replace it so we were just using window

fans. I couldnt take sprycel because it doesnt mix too well with heat,

at least not for me, I get deathly ill. Anyway I was just waiting for

it to get to the cool part of the year so I could start taking sprycel

again. About three weeks ago (after it had been in the 50's and lower

for a couple of weeks) I decided to go back on it but first I wanted

to get my finger stuck and see what my CBC was doing since I had been

off of it for about three and a half months. My blood work was

absolutely PERFECT! The first time in five years of oral chemo and I

hadnt even been on it. So that got me to thinking. When I am off chemo

I feel pretty decent. I mean I still get reaaaaally tired, and I have

bone pain here and there and a lot of nausea but for the most part I

feel pretty good. When I am on Sprycel I am absolutely miserable I am

sick and tired all the time and have no energy. I went ahead and

started it about ten days ago, within two days I was constipated and

wanting to sleep all day, within five days I was severely depressed. I

stopped taking it. Within two days my mood lifted and I had energy and

my bowels straightened out. And that is when I definately

decided......not to take anymore chemo. I have an appt. with my Onc.

in the morning and I dread it because he is gonna be a pain about it.

I want to still be followed and see if my CBC will stay within normal

ranges or at least not get too out of whack. I told my kids and

husband that as long as everything was looking good I didnt want to

take anymore meds for CML but that if my counts went up, waaaay up I

would go back on them. I was very surprised by my 16 yr olds reaction.

She said she wanted me to stop taking it! She said I would wrather you

not take it and you and me get along cause your in a better mood, and

you feel better then for you to take it and be miserable the rest of

your life. That's kinda the confusion because 90 % if me doesnt want

to take anything but the other ten is scared to death! And I am having

another problem. I am having some kind of " attacks " I am having these

" spells " for lack of a good word where I am very very dizzy or

lightheaded, I don't know how to explain it except the room seems to

be moving up and down, kinda how it feels on a elevator, and I feel

like I am going to pass out. It only lasts about five or ten minutes

but usually I feel bad afterward. The last two times it has

happened.....I was driving. Tonight was the worst, there was like this

vibration that went thru my head and a loud roaring in my head (not my

ears)my voice sound like it was coming from far away, I could barely

hold onto the steering wheel but I slowed the car almost to a stop, my

daughter was terrified, but I couldnt think I couldnt hardly talk, I

just kept saying just a second, it cleared all except a little fog so

I went ahead and drove home, but I had this odd feeling in my head

most of the night and I got really nauseated. Does that sound like a

trans ischemic attack to anyone? A few years ago before I was dx'ed

with CML I was having these quite frequently and asked doctor after

doctor about it and they all just kind of dismissed it. But this one

tonight was downright scary and so have the last few been, I just

don't know who to ask about it, my onc will tell me it's not from CML

so he cant help My Neuro blew me off the first time around and so did

my GP So I just dont know what to do, I know something is going on in

my head, but no one will find out what??? Anyway sorry I wrote a book

just had alot to kinda get off my chest. Hope everyone is doing well.

Hugs,

Katy