sulky friday (the usual)

so goes the week after treatment: yesterday. i was the following: grumpy, bloated, tired of dealing with side effects of every kind, of any kind, tired of being this person with this disease, this person who cannot be done with it. 

let me sing you my song of pity: i will never again be a person who doesn't expect a limited life, who doesn't expect to die around every corner. 

for all i know, the drugs are working, for now. for now, yes, but there's literally no guarantee they will continue to work -- in fact, there's virtually every certainty that they will stop working. that could be in 3 months or 3 years or 3 weeks, but they will stop, eventually. i will run out of options. 

that is what ovarian cancer seems to be: by total random chance, you either get in the lucky (loose term, obvs.) 17-20% who never recur again, or you're basically fucked. no one can tell the exact timeframe of the fuckery, only that it will come. once you recur, the tick, tick, tick of your countdown clock begins in earnest. (so dramatic! such a poet!)

is there hope? sure. there are long shots and miracles and "new drugs every day!!!" (that last phrase especially requires you put on a very convincing face). that is what the nurses and well-meaning friends say when they know as well as you do how bleak the outlook is, but don't want to end your meeting or appointment on a low note.

are there new drugs? yes. and the chance that you will be around long enough for a very effective one to be tested and become the industry standard? well... no one really discusses that part -- because the truth is those numbers are quite low. new drugs take a very long time to be tested and brought to trial and declared safe and effective. and no one wants you to lose hope. 

there's a rumored study going around about how people who lose hope die more quickly than people who retain it -- which is the dumbest study to me because obviously. there's far too much pressure on cancer patients to be positive as it is, to be as upbeat as possible in the face of their hideousness, to be amazing patients, too! 

yes, you're living this life-threatening nightmare every minute but you're not down and depressed, no! you've got your game face on. you're determined to be THE BEST patient EVER, which will make your doctors happy! you will amaze them with your positivity or at the very least, not dismay them with the lack of it. 

this is all, in the words of my British husband, bullocks. i made that mistake last year, when there was a chance i could never recur again. but i don't make it anymore. point blank: it's a shitty fucking fact-of-life situation to be in. let's do away with this need to make others comfortable around it. 

i am open to being wrong (though you would never know it from this blog). there may very well be a legitimate study that proves the notion that BEING. SUPER. POSITIVE. in some way actually influences the course of this disease. what that study does not tell a person, i'm guessing, is exactly, tangibly how one actually stays positive inside the hellish landscape. BE is a directive, an imperative. it in no way implies a HOW. 

who authors these studies? i'm going to take a leap and say, not a person with cancer. and for that matter how, or more importantly why, would anyone want to quantify something so intangible anyway? stay tuned for more riveting thoughts.