bad days

so, i've been having lots of bad days lately. lots of side effects, or something. it scares me.

there is this realization that there must be "quality of life" not just life. just being alive is not good enough. being alive but barely functional (this week i've spent 5 days so sick that if this were two years ago i wouldn't have bothered to get out of bed.) just isn't enough. the reason i get out of bed and do stuff is because i know, KNOW that tomorrow will not be better. that i will be equally ill tomorrow.

the nausea is just about more than i can take. i know i have to eat to take my gleevec, but i don't feel like eating. pretty much at all. and when i do eat i feel sick. really sick part of the time. tonight, i doubt i'll sleep much because honestly, i'm running back and forth to the bathroom. i almost wish i would throw up. but i don't. instead i just feel like there is food sitting in my esophagus all the way up to where i swollow.

so monday, i'm calling dr robinson. i think i need a test to make sure the gleevec is working properly. and that my liver and spleen are still functioning properly.  one of the things i've noticed this week is that some left side pain is back. and that scares the crap out of me. if my spleen is enlarging again that means the gleevec is not working right. and if it's not that then what is all the side pain and pain in my shoulder again (i had referred pain in my shoulder before i was diagnosed, and it also seems to be back). if everything is going as it should, then i think we need to discuss a different medication anyway, because this existing thing... it's not working for me.