update

 i'm a week and a bit past chemo #3, so, starting to feel slightly human again. what we know is that the numbers continue down, which is great, but i'm still struggling with the gastroparesis, which is so frustrating at this point. best guess is that the tumor slowest to shrink is sitting at the top of my stomach. so even though i feel better in many ways, being able to eat a normal meal is not one of them. 

it obviously presents huge challenges for gaining all the weight back, but i'm still eating (mostly drinking smoothies). i have scans scheduled for about 10 days from now to see what's what. depending on the location of the remaining cancer, my oncologist will consider adding one of a handful of different agents to the chemo, to help speed things up. 

while i'm happy at the prospect of speeding things up, i'm less so thinking about adjusting to more side effects, and to the possibility that even tho the combo is designed to work better, it just might not. i suppose i'm at the point of trusting virtually nothing -- for all i know, the scans will somehow show more progression despite the lowering numbers. after a while, nothing really surprises you.

i'm taking my thinking day by day because thinking beyond that gets me to a bad place, but i have to be honest: my spirit feels broken. not like omg there's no hope --- but, i guess, what exactly am i hoping for? this isn't a curative measure. sure, it could get me to a place where, if i could stay stable for a month or so, i might be able to join another clinical trial or something. but i've had too many frankly shitty experiences to get actually truly hopeful. 

i don't want to be this person, i really don't. i'll try not to dwell on it too much. but right now, where it's hard to do virtually anything i enjoy, where i'm looking at 3 more chemo sessions of feeling like absolute rot for 10 days or more, it's just. hard. to stay hopeful. yes, there are lots of interesting things going on in terms of research. but i don't have the same forward-looking energy reading about them. they seem, well, not for me. maybe i've just felt too poorly for too long.

my point is not to have this pity party of a post, tho, excuse me. it's really to make an update. i'll keep doing that, esp. after scans--- tho if the scan is bad, it'll take me longer to write, of course-- and keep the stuff about my feelings to a minimum. and of course if i should wake up one day and miraculously crave a full stack of buttermilk pancakes, i'll let you know that too! 

more later, my friends.

flow, etc.

Hi again. I'm a few days off of chemo #2, and before writing anything else, I will tell you that the tumor marker (CA-125) number appears to be in a downward trend. so that is the something i'm holding onto. also hoping it means an ease in symptoms, because yes, they have been kind of brutal. 

i've logged a lot of in-hospital time since receiving chemo #1. i was pretty sick the night after that first (though the doctor says it's the cancer -- a reaction like the one i had was just way too early to be have been caused by the chemo), went to the ER the next day, and then spent the following TWO WEEKS in the hospital. why the captial letters? two weeks in the hospital when docs do not know what they're dealing with feels like an especially long time imo. and lots of trial-and-error meds meant extra fun bathroom times. you get it. 

i've been home a week now, and the days are varied... i had a wee stretch of good ones, and some mixed ones, and well, i guess i'm getting used to them all, not daring to hope yet. i want to tell you i am keeping my spirits up but that would be a lie. i am in an unshockingly foul mood, feeling a bit singled out, envious of anyone i see walking out of a coffee shop and taking a nice, long sip of iced-whatever. that is what i aspire to right now! the person gently twisting open a buttery croissant with all the aroma and whatnot wafting out. iced-whatevers and wafting whatnots at my leisure: a girl can dream.

What about my former steadfast belief in the ebb and the flow, the natural balance of things, the "no matter how rough the ebb there will be, there just has to be, the flow?" cancer blew that to smithereens for sure. Cancer. Big fat dumb deadly cancer. where there is just a lot of ebb on top of ebb on top of ebb and for the life of me i can't tell if the flow is actually coming. i can't sense it or maybe have stopped believing in it a little. the truth is that sometimes, or at least this is how it's felt to me --- it doesn't come. the reality is maybe that it doesn't always come.  

but what about the lowering ca-125?  isn't that a kind of a flow? maybe.  

i'm probably physically the weakest i've been since being a kid right now. i have lost a lot of that kind of weight you don't want to lose, the strength, you know? you look in the mirror and it's ghost-you looking back, the sagging skin and pancake arms and the dark chemo circles. i am the sick looking person i vowed i would never be. so it could follow that i'm also a bit weaker in my belief systems. it could follow that i'm rambling a bit now, so i'll hop off here and rest up and go take some photos of the fists of lilacs appearing in the backyard finally. 

i love you all. keep fingers crossed. xx

start where you are (or whatever those books say)

 hey. i know how long it's been since writing. i wish it had just been depression keeping me away from updating you (and i'm not excluding that entirely), but unfortunately, it's been symptoms and changes and not wanting to put into writing any of the icky stuff.

so here's where i am: it seems the weekly taxol did a good job of reducing the abdominal fluid. the paracentisis i had last week drained well under one liter, and it had been over 2 weeks since the prior one. 

and i would have been more hopeful except for the fact that i was having so many problems just you know, eating. that thing where your stomach doesn't empty properly (gastroparesis) was happening, which was so uncomfortable. i'd eat only a few bites of something and it would just sit there on my chest for hours. 

breakfast would be ok because my stomach had had the night before to rest and work things through. and even lunch could be ok. but past 5 pm, all bets of comfortable eating were off. it started to get worse. 

i was on Cape Cod with the husband, just for 2 nights, invited by a friend, but had to leave the day after arriving because basically, i couldn't eat anything -- or take any medication -- without throwing up. so unpleasant!! 

last thursday was my regularly scheduled weekly chemo, so i went in and told the NP what was happening. my onc came in and they talked and thought i might have a "kink" in my bowels (like a kink in a hose i guess), and that i should be admitted to the hospital. most of the time, rest and a reservoir of water/fluids, and these things (thing = partial bowel obstruction) work themselves out. 

BUT.  the scan they took in the hospital revealed cancer progression instead ! fml, seriously. you simply could not write a believable script where more shitty things happen to your heroine, right? right. so essentially, the taxol took care of the abdominal fluid, but now more cancer is surrounding the lining of my stomach and "encroaching" on my liver. i can't even with that word "encroaching," you know? but anyway. 

what a crushing blow, right? sometimes it still doesn't feel real. and it especially doesn't feel real when delivered by an overenthusiastic, overachiever, 12-year ER doc. but ok, now we obvioulsy need to change course. i'm due to start a new chemo on friday. WHY NOT SOONER? omg i wish i knew, but it *is* Boston's Holy Grail Marathon Week so there are fewer days for scheduling. 

the new chemo isn't acutally that new. we're going to re-introduce Carboplatin, one of the two drugs I had the first time around in 2019 and then again after my first recurrence in 2020. Platinum drugs are the big guns for so many cancers. 

wait, andi, didn't you develop an allergy to it in 2020, and didn't you have to go into the hospital during a pandemic and get it delivered to you over the course of 12 hours with a nurse watching you the whole time in case you went into anaphylactic shock? oh yes, that's the one. 

wait andi, didn't it not work 100% in 2020, you know like, not bring you to remission or whatever? also yes. BUT i guess you can re-intro these platinum drugs if your body hasn't had them in a while, and there's a decent chance they will work. And well you know, decent is what i so seriously need at the moment. 

i will still need to spend a 12-hr day in a hospital bed having a nurse watch me. but hopefully this time the Carbo will kick mightier ass. I really need it to. 

until then, i'm camped out in the hideous recliner we bough waaaay back in 2019 thinking it'd be good for a recovering abdominal surgery patient. and it was. right now it's the only way i can sleep, because lying flat in my regular bed makes me wake up choking and barfing. 

i don't want to mention the barfing, because who likes to conjure up the image of their once-vibrant friend walking around their house with a gray plastic barf tray in case the meds or the nutrition shakes or the tea or whatever don't go all the way down? 

i will mention the food aspect though because you guys, i am starving. i am losing a lot of weight and if you know me, you know i have a lot to spare, so this is good, but even now, i'm edging into scary (for me) territory: so long, fantastically large butt! hahaha, but seriously. i just have to eat soft foods and liquids and things my stomach won't have a hard time trying to digest, because the cancer cells surrounding the lining make it difficult for my stomach to expand and contract the way a stomach normally would. 

so yeah, this is not an image i wanted to give you: being held hostage by a Bob's Discount recliner while my stomach is held hostage by Grade A Top Performing cancer cells. counting the days until Friday. And hoping beyond hope the platinum drug will do what it can do best. trying not to think beyond that. 

if you are reading this, i love you and i'm scared. more scared than the last time i told you i loved you and was scared. i'm angry and tired and exasperated and you know what else? i'm totally taking it personally (i'm looking at you, universe). even with all i scientifically, intellectually, medically know about the random nature of such things, this particular string of bad luck feels insanely personal. 

Sometimes, the decision gets made for you

Well, hello. I see that I've managed to skip all of February (you'll understand why, later) and we're well into March. February was pretty rough. February was effed up. Whatever with February, because now it's over, but I will try to sum it up in slightly-distanced bullet points:

• I decided to try for the trial, but my body did not comply. It grew larger (I absolutely looked pregnant, which is darkly comic for a 56-year-old woman with zero baby-making apparatus), more uncomfortable, and the scan I'd had for the trial showed fluid collecting in my abdomen 
• The fact of the fluid disqualified me from said trial, because the drug being studied was know to have worse side effects in the presence of fluid
• The fact of the fluid was also bad news because, well, fluid collecting on your abdomen is never good news, not for any cancer
• While this came as a huge blow, it was also not incredibly surprising, given that I hadn't had any treatment at all since the previous December, but do not let me minimize the blow here. IT SUCKED. 
• I realized that when I'd first been diagnosed and was scouring the interwebs even tho I knew I shouldn't, I came up with this idea that fluid on the abdomen = death knell. I made an imaginary mental line that once cross, could only mean DOOM AHEAD. I'd been living with it since 2019, and now I'd crossed it.
• This mental challenge has been hardest of all to live with. Let me say here: the fluid is not necessarily a death knell. I mean it's not GOOD, it's really not, but neither is it the End Times.
• I began weekly chemo (taxol) on Feb 17, and each Wednesday prior, I had the fluid drained, a process that sounds hard and painful, but which isn't either, if you have good doctors (ahem).
• That first Wednesday, they drained 3.8 liters from my abdomen. I KNOW! but can I tell you, the fucking relief of that day? The joy at craving coffee again? The delight at an empty stomach? Amazing, really.
• The 2nd Wednesday, there was only 2 liters, a hopeful sign that the chemo had already started doing its job -- although, according to my scientist husband and some stuff I don't understand about gradients, that could also be because the fluid had only a week to gather. It would be the next Wednesday that we would know for sure if something was working. 
• So the next Wednesday, there was less than 1 liter of fluid to be drained. so YES the chemo has started working to kill off fluid-causing cancer cells (confirmed by oncologist).

SO HERE WE ARE. Here i am, and i am relieved and grateful. I try not to be too over-the-top-happy with this stuff, because as you've witnessed, it can change on a dime, and there you are left with another emotional extreme to mop up. That gets exhausting. 

Obviously we hope the chemo will continue to work in my body for as long as possible. But one thing I am trying to come to terms with is this: the chemo is not considered a "curative" measure. Meaning, it will hopefully reduce some of the tumor and keep things stable, but it cannot (barring those cancer miracles that occasionally happen to someone's somebody) cure the cancer. 

The cancer isn't considered curable at this point. From a Western medicine viewpoint. From the viewpoint of good doctors in good hospitals at a major cancer center in the United States. I don't know why I just started writing in these weird, staccato phrases. But you get the picture... or maybe you already had it. 

On the other hand -- and I seriously have to make it a point to look at the other hand, in order to keep my spirit up, lots of really interesting things are happening in cancer research, some that may even apply to me and my cancer. The drug from the trial I didn't get into, for example, is in Phase 3 trials, and should it prove effective by the year's end or sooner, it will become FDA-approved, and available to me and other OC patients. 

And that's just one trial. There's really so many happening (clinicaltrials.gov, high up in my browser history). My hope at the moment is in science. and in my body doing the best it can with the help of some poison. This weekly taxol keeps some women stable for up to 2 years. May that be the case with me, because I'd really like to get back to some travelling if possible. Or at least get to a lounge chair anywhere on a warm beach before the end of April.

Next post I'll tell you all about this massive pile of poems that keeps piling up before me, and my sense of urgency yet seeming inability to wrangle it into a shape of some kind. A far less dramatic (and gross) kind of post. Coming at you in sooner than another 6 weeks, promise. 

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