Could be nothing, could be something

warning: this is a super-boring post.

i haven't written since wallowing in my sulkiness, but i haven't been sulky this entire time. some of it has been productive, work time. like all of a sudden i have 3 new clients. they contacted me. i want to believe this is the universe's way of inviting me to live for a lot longer, because why else would it present me with new opportunities? but then i quickly shut down that way of thinking because it does no good. it might be a sign and it might easily be nothing more than a few more people getting in touch with me for work at the same time. 

anyway, working keeps my mind off the many dark roads it is wired to travel. so it's good in that sense. balancing it with my medical stuff is proving to be a bit more challenging than i thought, though. two weeks ago, i had some pain on my right side just below my rib, and also a lot of pressure in the groin area (i used to be squeamish writing about stuff like that but i no longer have any shame). i waited a few days for it to subside, and it did, but not completely. i thought maybe it was a UTI

on thursday night i was running a low fever of 99.9 -- tho really for cancer patients, 100.4 is considered a high fever, so i guess it wasn't all that low. the next day i went into a special unit of the hospital for cancer patients during COVID. it is mostly a place where they rule COVID out. tests were done. prodding and poking prevailed. tests came back. it was not a UTI. there was a little area at the top of my port that looked like it could be infected. that would have explained the fever. they gave me some antibiotics for that. my doctor suspected that i'd passed a gallstone (see, no shame). nothing conclusive because you know, if you passed the stone, it's gone.

today i went to the hospital to get my labs checked, make sure all my numbers looked okay enough for me to do  12-hour chemo #4 on friday. i asked for a urine test because i am perhaps the girl who cried UTI but really, i thought i had a UTI again. this time i was right, though it was mild. more antibiotics for me, woohoo!but. when the NP had me take a deep breath, she pressed on that area underneath my rib aka gallbladder and i cringed.

well now i'm on my way to get an abdominal ultrasound. the doctors are assuring me they do not believe it is cancer-related, as my CA-125 has been going down, 40 points after each of the first 2 treatments (woohoo!). still, they want to check it out. which yeah, obviously, so do i. it could be nothing. it could be something. story of my life from hereon in. 

and my CA-125 went down after my 3rd treatment, but only by 4 points. what could it be? it could be all this business with my gallbladder that kept it from going down more signficantly. it could be that i am plateau-ing on the Doxil, that after friday's treatment i will start seeing the numbers start to go up again (this doesn't feel likely but honestly, i have zero ability to trust my feelings around all this stuff). could be nothing but a small decrease for no reason. could be something -- something mild and treatable or something large and potentially life-changing. AGAIN. 

it is exhausting to navigate, and it is especially exhausting to navigate during a pandemic and where it feels like there isn't a lot of great news in the world. to live with this disease, i have to find a way to deal with the nothing/somethings a lot better than i have been. there's likely more of them headed my way. 

 

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.