trial by clinical trial

🧪 well after that overly-detailed waiting for scan results post, i at least owe the 2 or 3 of you readers here (thank you!) some actual results. 

they were mixed. the scan showed some growth on the spots of cancer I already have, but no new growth. so i thought it would be back to chemo and hair loss and fatigue, but my doc had another idea: a clinical trial. apparently there's one being recruited for now, in boston, that i might qualify for, and that could be of some benefit ("could be" is the operative phrase there, obviously, but one hopes). 

the easiest way to describe it is to say it's a trial that is testing a combination of 2 immunotherapy agents on tumor-based cancers. you may have heard about a decade ago (if you were at all reading about cancer then haha, which i was not!) that immunotherapy was discovered to be super-effective, miraculous even, on some cancers (mostly blood-based). ovarian was not one of them. 

these days researchers are combining 2 kinds of immunotherapy, with some better results on tumor-based cancers. so i'd be participating in one of these. generally OC patients are not recruited for the double-immuno trials because it's responded so poorly in single-agent ones, but apparently this combo (with intriguingly mysterious letter number combinations like AGEN1181 and AGEN2034!) has shown something different in tumor-based cancers, like kidney cancer, so there is optimism that it could help OC. 

so, doing a clinical trial: on the one hand, bring it on, right? i mean, i've not been having a ton of luck with traditional, standard-of-care treatments of late. and each time i get one, they become even less effective. let's go at this with something out-of-the-box. on the other hand, well, there's not really another hand here. i did not have "medical guinea pig" on my bucket list, but neither did i have "advanced cancer-haver," so... not a whole lot to lose here, right?

i'm reviewing all the trial info now, and next week i'll go into boston to chat with the people running the trial, so i can ask questions about logistics and side effects and all that other fun stuff. oh and sign the consent form. 😬meanwhile, i am to take a month-long vacation from all drugs, in order to be cleared to begin the trial ones. 

i left my doctor's office yesterday with a weird feeling. i was obviously bummed about the continued cancer growth, pleased there was no new growth, and relieved i wouldn't be spending my 3rd summer in a row losing my hair and being crazy-exhausted. i hadn't even considered there could be another option in this scenario. so i felt dare i say hopeful, and i let myself feel that for a while. 

it was softer and lighter and nicer and such a reprieve from the intensity of walking around with imminent death in the back of my mind. i am cautious around hope, and yet, i know that i need it. 

to that effect, and to celebrate the fact that i will not lose my hair this summer, i've decided i will get a proper haircut and perhaps a bold color (BLUE?) to lift the mood. and maybe to feel like more of a badass since i haven't really been wearing my doc martens a lot during lockdown. or since cancer, to be honest. i look at them now and they feel like they are of another era entirely. so maybe i need to enter a new one. 

🧪

Scan life

all day i've been trying to think up a good name for the period of 48 hours between getting a life-determining scan and receiving the results. "limbo" seems too weak. "purgatory" gets a bit closer. "scanxiety" gets a lot of visibility, but i feel like there needs to be more than one. 

in theory, if you'd had a bunch of scans already, it would get easier. it doesn't. today, i had a CT scan to see if the drug i'm on is working (if you recall, the last drug i was on was working! but then i got a blood clot and it was deemed too dangerous for them to co-exist. this is a newer one). the getting of the scan is relatively painless. you lie on a table with your arms above your head, and a creepy machine voice tells you when to hold your breath and when to breath normally as it pushes and pulls you into and then out of a tunnel-looking scan machine. then you get injected with contrast dye, which they tell you in advance will feel warm and make you think you have to pee, but you won't pee. that is all the true. then you're done. 

i learned a long time ago not to look at the faces of the radiologists behind the screen who are taking the images. there's generally nothing to be read, and if they knew something, they are bound by their jobs not to tell you, anyway. this time when i got up off of the bed to go home, the radiologists were both gone. i'm just going with, it was their lunch break.

and then the waiting begins. you try to distract yourself with work or crap tv, but you fool no one. how to distract yourself when it's literally your life being looked at and interpreted and you cannot know anything for the next 48 hours. why 48? i suspect it doesn't actually take that long to be read, but radiologists could have many scans to read. also, if there's a spot or a lesion or a tumor that shows up in, on or near another organ, your doctor needs time to consult with a specialist of said organ. and she also needs time to consider the next course of action. 

the way you find out is no picnic either. if you can make it to your oncologist's office without throwing up (debatable), you go in, and sit down in a predictably bland corporate hospital office chair, with your heart beating at 80 decibels and your foot tapping to rhythm of your heart. (this happens for us on Thursday morning).

when the doctor opens the door you immediately scour her face for a sign -- is the news good or bad or somewhere in between? i have to be honest with you. occasionally it is good news, but most of the time, it is not great news. why? well because you have fucking cancer, right? the kind where the 10-year survival rate is not 85% (that'd be breast cancer, and yes i know, not all breast cancers, we're speaking quite generally here), but uh, less than 15%. (this is why they tell you from the very beginning not to look at statistics!)

best case scenario: your scan shows stable disease, i.e. no new growth, maybe some existent spots or tumors shrinking. your body is responding to whatever treatment you're getting and you can "relax" until it is time for the next scan (3 months is standard, but if your tumor marker is going way up and/or if you feel like crap physically, it could be sooner). obviously we're hoping for that. 

what makes me think it could go that way: i feel physically fine: appetite is good (pretty much always), no pain anywhere, just going about my "regular" days. 

what makes me think it could not go that way: last week's comment from the nurse practitioner, asking me if my doctor had called me the previous week to tell me my tumor marker had taken a sizeable leap. no, the doc had not called me. no i don't want to see the numbers. yes i feel fine. or at least i did before i came into your office. "we haven't seen this week's numbers, so it could still flatten out, though!," she says, and i give her a look that says, do not play that game with me, sister. 

i mean, it's not a bad thing to try to give someone hope, but seriously, read the room. 

so we'll head into Thursday's visit not really knowing and fervently hoping while also mentally preparing for the fact that i may be looking at Chemo Summer #3. it's quite the mental balancing act. but, as i am really trying not to be a colossal downer all the time, i will end with things i am grateful for: i still feel good, i'm still writing poems, there are still more treatment options, i still have this incredible amazing support system, and the most obvious, of course: i am still very much ALIVE. 

trip the light neoplastic

 that's a horrible title, by the way. i shouldn't use it. but i thought of it yesterday when writing a poem that had some dancing in it, and now i just want to use it somewhere, so here you go. 

i want to say WOW i haven't written in a month?? but i'm not surprised. the truth is, i don't really have many more thoughts around all of this. i mean, i do, but nothing interesting beyond the usual anger or sadness or bewilderment. 

what is also the truth is, the side effects of this new drug are kicking my butt. even now, almost one month in. they're subsiding but so slowly i'm not sure i actually believe it. mainly: nausea and fatigue. i thought i knew how to deal with nausea what with all my prior experience, but no. i certainly have hardcore anti-nausea drugs i could take (left over from last year's chemo) but it's a trade off for their side effects. 

so i'm sticking with my ginger chews and lemon water and i think today i'm even going to try one of those anti-nausea bands the pregnant people use on their wrist. (the irony of that is not lost on me one iota). occasionally i start thinking, but what if it's not the medicine but the cancer wreaking havoc again all over my body?, but then i have to shut that thinking right down because it does me no good. i mean it could be that, and it could also be just the medicine. i won't know until my scan next week. 😬

i mean, i think it feels in a way like i am resigning myself to this life of letting cancer have its way with me. everyone who has ever had cancer knows this futile feeling. it makes me quiet, and more distant (if that is even possible). like the kid who gets bullied and tries to fight back at first, but then just accepts the punches. it's kind of pathetic actually, that image as well as the feeling. 

not that you'd notice from this post, but i *am* actually trying to change some of my thinking -- or at least change the focus of it. trying to think about living or wanting to live like at any time of day. obviously the way we talk to ourselves is important, and i don't think i'm giving my unconscious self the message about anything except anxiety and fear. plus, i'm still really really angry. like, a lot. like, thank-god-i'm-freelancing angry. 

changing habits is hard, trying to flip one's own worldview is hard. 

tomorrow, i'll visit the hospital so they can take blood and check the platelets, blood cells, etc. to make sure the medication isn't affecting them negatively. it can cause anemia sometimes, among other things. the docs probably have at least a faint idea if they think this drug is working or not, based on other numbers (CA-125), but i can't bear to look at them. now my strategy is just: if it's bad, i am sure they'll let me know. 

after the blood draw, i have an appointment with the NP who will want to know how i'm feeling. and i'll tell her, and she will make a note of it in my records. and then i'll come home and try to keep pretending i am consumed by my copywriting. 

i'm trying to edit this as i write it (never a good plan), and it looks to me like it's not very hopeful. given that, i will share with you the poem i wrote yesterday about trying to change my thinking. it's not a particularly good poem, but it will maybe give you an idea about where i'm at....

will report back with any news of course. 

trip the light

it matters how you talk to yourself, so mind the storm clouds 

helicoptering your mind by default. by default try to think 

of something nicer, or at least more innocuous, 

like the stupid meditation you tried to smile through, 

or his warm shoulder sulking in the afternoon.

eat up compliments like jellybeans, letting each one

sweeten eerie thoughts about funerals and failures

and what the garden might look like without you. 

the idea is to mistake all good thoughts for indelible ink. 

commit to using phrases without hyphens, as proof

you are more certain now. only in learning to forgo 

your self-portrait as sunken canoe, can you truly leave

behind the awkward formal fable, the one where you dance 

and dance until dizzy with plagiarized fear, forgetting to pause

--not even once--in praise of swaying hips