the next decision

i'm still trying to write poems these days, even if not as often, but they end up being tiny paragraphs with names like "when to resign." i don't mean "resign" like "give up entirely" but more in the sense of acceptance. where's that line for a person with advanced cancer, the one between believing with all your heart that a major change for the good can still come about, and accepting that, given what's going on in your body, a major change like that is not likely realistic. 

how do you balance hope with reality? i've been asking that since the beginning of this mess, and maybe the answer evolves as time goes on. or maybe there's always been only one answer: the best you can. 

there are all sorts of clinical trials and research happening all the time, and it's not completely weird to hope for something life-changing. i used to think, i just have to stay alive until the next advancement in my disease. this is true, but actual advancements take time. and you don't know how what shape your physical body will be in by the time the next thing arrives. 

all that being said ---- i spoke with my oncologist yesterday about next steps. as i suspected, the recommendation (i.e. best bet) is for me to receive a weekly, standard-of-treatment chemo drug (taxol). i had taxol back in 2019 when i was first diagnosed, in combo with a platinum drug (carboplatin), that combo being the big guns/gold standard for ovarian cancer patients going on decades now. 

getting taxol weekly (3 weeks on, 1 week off) behaves differently in the body than getting it in big doses like before. i will lose my hair more slowly, among other things (!), but by and large, i have heard it is not too hard to tolerate. and i've had it before, so it's not absolutely terrifying (just mildly so haha). 

BUT WILL IT WORK? well, who can say? there's a good chance that yes it will. i'm refusing to entertain any other possibility today. 

in terms of other options, there is a (you guessed it) clinical trial that combines said weekly taxol with a drug called AVB-500,  a "GAS6/AXL inhibitor." its methodology is still not entirely clear to me, but i think basically it targets specific molecules involved in the growth of cancer cells ( sometimes called molecular targeted therapy, or small molecule cancer therapy). 

this is a "phase 3" trial (the last one i was one was classified as "phase 1") which means the drug has been through more testing, and the results are positive enough that it's fairly close to receiving FDA-approval as drug that all OC patients will receive benefit from. in phase 1 trials, the drugs are newer, and still being tested in terms of safety in humans.  

it's also a blind trial, which means i might get taxol plus AVB-500, or i might get taxol plus a placebo. either way i get the weekly drug my doc wants me to take, so there's no humungous loss if i end up getting the placebo in combination. 

so why not just do the trial then, right? well, here's the thing. getting sorted for a trial can take a few weeks or more, given all the paperwork and pre-trial test requirements (scans, biopsies sometimes, mri, etc. whatever the trial requires). which normally for me is no big deal. BUT.  since the last drug stopped working (around Thanksgiving of last year), my cancer has been growing, and i'm starting to feel some symptoms. 

nothing huge, but because of the cancer's location near my bowel (sorry if that's cringey to mention but it's just the truth and my cringe-meter has evolved a lot in 3 years!), i'm having some pain in that area, some cramps and related unpleasantness. it really just started to be noticeable last week and it's not debilitating, i'm not even taking tylenol for it at this point, but i don't know how it will progress in a month's time.

if i choose not to do the trial, and return for treatment to my Boston hospital's cozy suburban branch, i can will be able to start the getting the drug next week. so now i'm weighing the part of me that wants to get treatment like NOW against the part of me that still hopes for the possibility of something more and possibly life-changing, that is very pro-clinical-trial, go science! etc. 

trials by and large are more rigid in structure, meaning there's little room for say, adjusting the dosage of something, or adding another drug later down the line, etc. there are more hospital visits and check-ins, blood draws and other testing. oh and the possibility of potential new side effects because it's just something new in my body. 

so i'm sitting here today trying to predict the unpredictable with my body, wondering if it can wait a few more weeks or a month or whatever, or if it should just get the treatment started next week and get on with it... no big deal, just one of those hugely serious life-altering decisions cancer patients are faced with all the time! i joke, haha, but i'm always aware of how fortunate i am to still have decisions to make. 

Wolf month

 Last week at this time, I noticed some sniffles. I took a home test and discovered I was positive for COVID. It never amounted to anything more than some mild congestion and a dry cough, and one week later, I'm without symptoms. So that part is good. 

Last Thursday, I received the results from my latest CT scan, and this part was not good. Tumor growth. A determination by the trial doctor that the one resulting drug I was taking was not effective, and so, this was the end of the trial for me. 

It's hard to describe the disappointment, anger, frustration, sadness, but it was all there, even though it's not my first time getting bad scan news. I'd tried to keep my expectations for this trial reasonable, but when fighting for one's life, that is probably not possible. It's not that the drug combo didn't work to hold back the cancer. It's that the drugs that held back the cancer gave me potentially life-threatening colitis. 

Am I the only one this happened to? I am sure I'm not. The mind goes in all the directions: it could easily have been fine for my body. It could easily have just been a one-and-done mild case of colitis, and then they could have slowly re-introduced the offending drug into my body. None of us would have been surprised by any of those results. And yet, it went another way. 

So what is next? I'm still trying to find out. Due to the COVID, I still need to wait another week to take a PCR test at the cancer center. I'll need 2 of those in order to get treatment (I'll be returning to my suburban branch of the Boston hospital, where I used to get chemo). If I test negative on the 24th, they'll immediately do another test, so that I can be ready to get whatever I'm going to get. Will probably talk with my regular oncologist that week about options. 

There are many interesting trials going on, some involving small molecule inhibitors and even CAR T cell therapy (thanks, Kim!).  Not sure what I qualify for now and what I could get into, and if my doc even recommends jumping to another trial right away. But most options will involve more chemotherapy, I think (either alone in or combo with another drug) -- the kind that makes you lose your hair. 

I don't actually have a huge thing with being bald, and am considering one of those cool henna tattoos for the future, depending on how bold I feel. But you know, it's more chemo. And last year before the immunotherapy trial, when we were discussing the option of more chemo, the doc explained to me that at this point, the chemo is less likely to be effective against my cancer. Not sure if that'll still be true almost a year later.

So yeah, not the brightest week in my household. I spent a day wallowing (and I mean seriously), and then the next started trying to think, well, I don't like this situation, but I can't change this situation, so what will I do to cope with this situation? Trying to step back as much as possible and gear up for whatever's next. 

There are many, many dark rabbit holes calling my name right now. I am trying not to go near any of them. British crime dramas are helping some, honestly. And jigsaw puzzles. And writing. I am not as hopeful as I was even just a few months ago. But I'm not depleted, either. There are still options. I am still here, still open.

catching up

 hey. it's been so long since writing in the blog, i half considered not doing it anymore, but it's easier to quit than to keep going with so many things in life, and i didn't want to start the new year off slacking, at least when it comes to writing. 

i realize i missed half of november and the entirety of december, so i'll catch you up: the scan i was previously blethering on about did indeed come back stable, and that was good. that was an early birthday present. i took the results call while grocery shopping (why?) and then cried a little in the dairy section. the emotional up-and-down every 6 weeks is pretty brutal. but this was/is good. 

i started back on the trial at the beginning of december. i was relieved to get back to it, honestly, and that first day back, everything went ok. while they were hooking me up for my infusion, one of the newer nurses asked if i was going to receive one drug or two drugs that day, and the other nurse told her, andi only gets one drug from now on. 

she did say it in any way other than an informative one, a plain statement. but you know me by now: i let it pierce my psyche and consume me for a while. i let myself dwell on the fact of it, feel shitty and scared, and by the time i got home from the hospital, i had sunk into a bit of a depressive state. 

i mean, ok, i've been in depressive states before for a lot of things worse than this, but something about it, probably combined with the time of year and/or general exhaustion, took me a level lower than usual. and that's it, i mean, that's what has kept me from checking in here, and writing. i have been struggling to lift myself back up to the regular (or rather, functional) state of living with this thing. 

to be honest, for a while, i'm not sure i necessarily wanted to lift myself up. anyone who struggles with their mental health understands this feeling; the hopelessness is part of the disease itself, and you get into a dark cycle. to be clear, i was not suicidal. i was mostly super-low energy. i had few distractions and i did not try very hard to find any. it was tough. 

what i think is, the longer i live with this illness, the harder it gets, or maybe the more tiring it gets, to roll with the constant changes, the perpetual life-and-death unknowns. not that it was ever smooth sailing, really. but like anything challenging, these kinds of things take their physical and emotional toll. 

and let's be honest: the world as it is now -- even without cancer -- is exhausting and hard, full of scary unknowns and constant frustrations. people who maybe didn't think about such things before, are having to change the way they approach the world, take stock of their lives, understand what they're grateful for, look for joy in people and things that are smaller and closer to home. i'm generalizing of course, but i think you know what i mean. 

so, here we are. i had an infusion just before the new year, and tomorrow, another scan. we'll see if this single drug is working on its own to hold down the proverbial fort. maybe my immune system has learned a lot in the last 6 months. and as i told my nurse-sister who was awaiting the results of a COVID test after treating several positive patients, let's also allow for the real possibility that things are okay. there's an equal chance of that being true. quantum mechanics vs. fear? (p.s. she tested negative). 

so i don't know. but i don't suppose anyone else does either. it's not the most "rah rah 2022!" kind of outlook, but it's not all gloom-and-doom, either. hope to write you more soon. xx