life is funny

so i used to think/say that even had i not had a very bad reaction to birth control pills that i probably couldn't have taken them. why? because i always had trouble remembering to take them everyday at exactly the same time/etc.

funny enough, now i am supposed to take medication everyday to save my life. (not at this particular moment since i'm on this drug holiday--and that's what actually makes this sort of funny) i've had it drilled into my head that i MUST take gleevec every single day. that not taking it puts me at risk of dying. good motivator that. so, since i started taking it in october, i've had two omg moments, where before i went to bed i realized i had not taken it, and ran downstairs (ok moved slowly) and took it. i did buy a pill box with days of the week, so that my chemo brain would not confuse me, but otherwise, i take it like clockwork everyday at about the same time.

the thing is: this drug holiday is a bit disturbing for exactly this reason. i'm not taking pills. or at least not gleevec. and that is a bit unnerving. and NOT taking my pills is now causing me stress. my neck is all swollen--i'm worried that it's the CML progressing. my face is swollen and my tongue sores are worse and i've gained 5 pounds--it's the CML progressing! (at least in my head that's what i fill in).

i totally understand that sense of "lifeline". as long as i'm taking the gleevec (even with all the nasty side effects etc.) i feel like i'm doing something to keep the white cells at bay. my onc called me last week to say stay off the gleevec another week. he said my platelets were up to 61 from 46--that's good. then he said the words--and your white blood cell count is up. normally, given that it was quite low 2.3 instead of 4.0, you'd think that was good. but my mind filled in the rest--it's the CML coming back.

now likely as not, none of this is the case. i'm sure i'm actually fine. but my gut level reaction to everything is that  it must be related in some way to the cancer. it's easy to say i'll stay positive, but my brain does it all on it's own. it fills in the words i don't want to think. i can't wait to go back on the gleevec. i'll complain about the side effects. but at least i won't worry about dying of cancer.