the terrible, horrible, no good, very-bad week....

.... is over. it's all over but the side effects, they say, whoever they are. 

i sit before you, having in the last 96 hours: been tested for COVID-19 at a drive through stop (negative), been tested for allergies to my main chemo drug, carboplatin, which involves several hours of injecting various dosages into your arm and waiting for something bad to happen (nothing did), spilling my proverbial guts to the oncology nurse practitioner who was literally guiding me to the exit door after 40 minutes (i always forget that these medical peeps by practice have to write down everything you say, even if you're pouring your very heart out because finally someone who understands is listening, that gets written up in your "visit report." (like, "patient says she is very angry that she has had a recurrence. patient says she has screamed a lot when her husband isn't home," etc.). it's like having your diary stolen for medical purposes or something. i always forget. 

what else did i do? oh, the next day i went for a procedure to get a chemo port placed just under my collarbone and attached to some giant vein or whatever, because it makes things easier when you are looking at a forseeable future of otherwise being injected by needles a lot. it's efficient, it's nifty, it does the job well, and it's also a reminder that you have many cancer-related thingies coming up. 

also, it hurts to get the thing put in because you have to crane your next to one side, like waaaay over to one side and stay still while your chest areas is slathered with some blue-green numbing gel that itches like a mofo, and you cannot use your hands to scratch it. also, the cutting bit, which is small but you know, conscious sedation means you still know they're cutting you. there was more but i'll spare you.

i needed to get that port put it because TODAY i spent from 7 am until 7 pm in the hospital undergoing a "desensitization," which sounds like a cult deprogramming method, but really it's a very, very diluted and slowed down chemo drip of the drug they think you are allergic to. for this lovely day out, you go to Boston and become an "inpatient for the day," hanging out on the oncology ward of a major metropolitan hospital where  the doctor tells you, "you are the healthiest person on this floor," which really throws you for a loop.

so what happened? i had my super-slow drug administration, with a nurse next to me at her desk the entire time in case i went into anaphylactic shock (i did not). nothing at all happened, which is good news, but also: i am so tired. yesterday on the port-insertion day, i was not allowed to eat or drink for 6 hours, which turned into 9 hours because it's crazy-busy in the procedure room these days. 

also i am not allowed to shower for 48 hours after placing the port, which might be fine for someone who does not have hot flashes and night sweats and legs-that-stick-to-each-other syndrome. so i'm here feeling pri-tee disgusting. 

but also relieved, right? and i finished chemo #2 so now, only 4 to go. this was not a typical week, but it was a week of consecutive shitty days that ended with 10 hours of getting poisoned to kill the poison that lives unceremoniously in my; body. so, all in all, mixed. 

all that lies ahead now are side effects and at least we know what those are and can try to get on top of them before they happen. 

i survived by going through, which is the only way to do it. but holy smokes what a fucker of things to go through. and clearly, i was the "healthiest" person on the oncology floor, which should tell you something -- specifically it should make you wonder why all the "survivor" and "survival" movies are about people (mostly white, good-looking people) who "overcome" circumstances like free-climbing and free-diving and deathlike winter temperatures, and it's almost always this athletic stuff, seeming unachievable feats of daring that can be surmounted only by a chiseled chest, keto diet, and lots of practice?

where is the movie about one day or one week or one month in the life of someone with a scary cancer, which is not surmounted by chiseled chests and keto diets and practice (just ask the marathon-runner one infusion bay to my right), which might not be surmounted at all?  that's a fucking survivor, if you ask me. 

no one did ask me, of course. but that's what blogs are for. 

Where is my mind? (apologies, beloved Pixies)

START venting ranting post: 

 the time between posts gets longer and longer not because i don't have a lot to say -- oh, believe i have so much to say i couldn't possibly say it all -- but because a lot of things i have to say are just variations on the same stuff: this is hard, i did not expect this particular detail, this sucks, i miss my dad, i am tired of carrying it all while trying to live like a normal person.

and today isn't any different really, but i felt like it has been a while, so i can update. next friday i will have chemo #2 of 6, BUT. but i also have to have the following things before i can have the chemo: COVID-19 test and allergy test to see which of the two drugs i had last time gave me an allergic reaction. i was sure it was the platinum drug, but since the drugs are given so close together, they want to make sure. 

okay, so those two tests on Tuesday. Wednesday, labs get taken and we see if the drugs have had any effect at all on my CA-125. Ah, the CA-125, fortune-teller of my life at the moment. the first time around with the platinum drug, that number went waaaaay down, which was the first bit of good news i'd had for a while. however, there was a giant tumor sitting on my ovaries, so there was a lot for the drug to attack.

this time around it could still drop (we hope, we pray, we beseech the universe in the shower every morning), but it might not be so significant. is there a chance it will NOT drop? yes. is there a chance it will in fact GO UP? yes. but i try not to give those particular possibilites much attention. 

right, so that's Wednesday. Then Thursday I stop eating and drinking at 7:30 am so that I can have the procedure called "putting in a port," basically a small thing they slip just below the skin, under your collarbone i think, that accesses the vein. so no more needles for a while. this is how i'll get chemo drugs, how they'll draw blood, etc. i think it sounds nifty and efficient if it's not you who is getting one in. 

then... the big day, Friday, the 12-hour chemo day in which my drugs will be super-diluted and take that long to go into my body (see part above about allergies) and in which a nurse will sit there for 12 hours with me, watching that i do not go into anaphylactic shock. WHICH APPARENTLY RARELY HAPPENS, they say, and i am just going to take their word for it and decide they're being overly careful.

so yes, that is my fun-filled week ahead and i feel sick just writing about it -- although the sick feeling could also be the leftover cake, some graham cracker crumbs, and popcorn i scarfed down after getting off the phone with the allergy guy and realizing that my next week is pretty consisted of the above.

also though, because of all these tests and procedures, i will miss a bunch of work, and right now that work is the one thing i do each day that takes my focus away from my situation, so not working means more free time for my mind to meander, which is never really a good thing. 

i'll be honest: i am really hating all of this with the power of 80 kajillion burning suns, or whatever that turn of phrase is. I AM JUST. SO. ANGRY. angry that this is my second summer needing to attend to stupid cancer. angry that the maintenance drug didn't really "maintain," despite it being like the latest, greatest thing to happen in the field of ovarian cancer of late. oh it is a great thing.... FOR OTHER PEOPLE. angry that the year 2019 feels without end: bad news after sadness after bad news, etc. 

do not remind me that everything is not 100% awful. I KNOW THAT, OK? and i am grateful for a good many things. but seriously, you go ahead and try to juggle those many good things with these really awful shitty things. it's not an either/or situation. and it is the shitty things that affect me the most. BAD ATTITUDE? maybe. maybe i'm just a colossal grouch (just ask the aforementioned box of graham crackers i punched into powdery crumbs the other day). or maybe this is crazy-difficult to manage, no matter how Pollyanna Sunshine a person may be. 

 END venting ranting post.

side effects, after effects, & special effects (in no particular order)

i must've written this 3 or 4 times then stopped because, side effects. but today i'm feeling better, so let's begin. 

last week i began the first of 6 chemo treatments for my first official recurrence of cancer. i don't write this lightly, nor do i think you read it lightly, it's just sometimes typing it out makes it feel more real. anyway.

here's how it was supposed to go: the infusion would be 2 drugs, one i'd already had (carboplatin) and a new one, doxil. the whole situation was to take 1/2 a day (last year it took all day because i had a sensitivity to one of the drugs, and they had to slow down the drip) at my local suburban branch of a major Boston cancer center. no city traffic, lots of free parking, the whole deal. 

as you can infer from that skillful "supposed to" phrasing, it did not go like this. how it went was, i got through the doxil, which takes about an hour to enter the bloodstream. i did not mention that this med is a hella bright orange color, being closely but not directly related to this other cancer drug nicknamed "the red devil." (it may turned my pee orange later down the line, but so far, so colorless). 

i breathed a sigh of relief getting through it (you never know how a new drug will react with your body). the next drug was carbo, my old platinum buddy carbo, for 1/2 hour. let's do this, carbo chum! but no. toward the end of the 1/2 hour i spied a rash up and down my arms. allergic reaction. 

apparently yes this happens. you can have had carboplatin before and done well with it, but if you stop taking it for a while, your body can build up antibodies to it, and so you can have an allergic reaction to it on the next go round. so, NBD, pop a benadryl now and they'll just slow it down for me next time, right? 

not so fast. carbo is serious shit. ok, it's *all* serious shit, but carbo is slightly serious-er? it has mustard-gas derivates, among other things. do not look this drug up on the Interwebs. and do not think too hard about it being in your one precious body. really do not do that. 

so, instead of having it take 1/2 hour at my local surburban hospital branch, i will for the next 5 treatments need to go into Major City Cancer Center, and have the carboplatin administered over the course of 12 HOURS. yes. it gets diluted to that degree, in order to prevent another reaction. and i will sit in a room with a nurse who has been assigned to sit with me for the whole 12 hours, watching for signs of anaphylactic shock. NICE. ok, the chances of it happening are not high, but you know, high enough that we have to do this.

it's ok. it's not like there's a pandemic raging around the country.

you'll forgive my snarkiness and not read it as self-pity, please. it's just at times like this i start wondering if all that mumbo-jumbo about curses and vengeful gods might not be so much mumbo-jumbo. and honestly if you tell me that god never gives someone more than they can handle, even if you tell me this in a slightly jokey way, i am going to hunt you down and punch you with my well-learned boxing moves. seriously. i have a right hook that your face does *not* want to meet. 

but i *will* do this, i will back up and be grateful. 

1. i live near boston which has some of the best hospitals in the world for dealing with what i am dealing with. 

2. i have decent health insurance (insane this is even an issue, but, 'murica).

3. despite much of the rest of the country being, as my friend Dan calls it, "stupid with two o's," boston is managing to flatten its virus curve to some degree

4. which means that there is enough medical staff that some poor nurse can sit with me for 12 hours. i'm sorry for her in advance (i am not a riveting conversationalist, and will probably sleep most of the time). 

in addition to this little development, i will also be getting a port inserted into my body, in order to make infusions and blood draws, etc. a bit easier on the veins. i've been lucky so far (if you ask me) that my veins have been strong and viable enough as is, my chemo infusions and blood draws infrequent enough, that i could go it without one. 

but doxil is temperamental and can wreak havoc with your veins, and havoc = tissue damage, and no one really wants that. so i am going to have a little contraption inserted somewhere near my neck, that connects to a central vein, and medicine from here on in will be inserted this way. i feel different ways about it depending on the minute. 

at this minute, i am for the first day in a week feeling mostly human, after dealing with after-effects of doxil and carbo and MY FAVORITE drug neulasta, an immune-booster that most cancer patients are getting now thanks to covid. neulasta can fuck right off, i mean, sure, all cancer drugs can fuck right off, but make neulasta first in line. that stuff makes my stomach feel literally invaded. i will spare you further gory details, but just add two words: bone pain.

this is a long post and i could go on and on, but i'm going to end on this thought i had whilst down on my knees with this recurrence business: 

why in the middle of a personal horror show are cancer patients of all people pushed to their knees? they accept (kicking and screaming) the being cut open and injected, infused, shot up with poisons from world war II, accept that there will be side effects and after effects and well, special effects too, effects until it feels like life is one long series of trying to head off side effects...

the truth is we should all be grateful for so many things, but most of us go through life being untouched by The Terrible, and so we forget. I forgot. i guess my feeling is WHAT. WHAT WHAT WHAT WHAT WHAT. WHAT with anger, WHAT with rage, WHAT with fucking everything since March 2019.

i want to stop operating at this speed. NO i don’t mean i want to stop living completely, numbskull. i mean i want the opposite. i’m done being on hold ok?

The myth of the finish line

Welcome to July.  Let's get up to date: what showed up on the second scan was 3 tiny spots near (not ON) the intestines. The largest of the 3 is 1.6 cm, so... yes, things are pretty small, things are not in my brain or somewhere hard to get to. I'll give you that cancer, you have permanently changed my gratefulness meter.

But now that something has officially shown up on a scan, it's time for Chemo Experience, part 2. I'll get one of the same drugs as last time (Carboplatin, because platinum drugs are ovarian cancer cells' worst nightmare) and one different one called Doxil. Last year the other drug was Taxol, which you may already know as the "one that makes you lose your hair. Like, all your hair."

Doxil is explained as milder in terms of side effects (not that I'm necessarily looking forward to hand and foot blisters, mouth sores, and extra nausea). It is supposedly easier on the immune system (taxol wipes you out something fierce) so in theory, I will not be so dog-tired. Also, my hair will not fall out, which is a vain kind of relief. (But seriously, the hair loss thing is huge, vain or not, unless you're a man because then baldness is NBD. But that's another rant).

So I'll be getting this poison (no, wait, "healing energy") cocktail, once a month for 6 months, starting tomorrow. Not that the husband and I had planned any big excursions anywhere this year (I'm looking at you, COVID), but even without the virus, we just haven't had the fucking time to fucking plan fucking anything (I'm looking at you, universe).

Ok, I've gotten that out of my system for a few minutes. Maybe the hardest revelation for me during this whole shitshow of the last 16 months is the one where there is no finish line. When you first get diagnosed, it's all so overwhelming, so one thing people do is steel themselves for what's ahead, buckle in, hold on tight, etc. in order to march through the chemo, the surgery (or surgeries). Face forward, barrel through, onto the other side. Like that famous Winston Churchill quote, "when you're going through hell, keep going." And that can work.

If you are lucky enough to experience remission at all (some people do not), and if enough time without the cancer goes by, you can start bit by bit to reclaim some of what used to be your other life. It'll never be the same of course... but little by little, you get your energy back, you start to work again, move forward, participate in the world not as a patient but as someone who has been through something arduous, and emerged victorious. Finish line! Woot! You start to feel like maybe it's going to be okay, that you can make the arduous something a memory.

When cancer comes back you realize that the finish line is a myth. Cancer doesn't work that way. I could be fine for years, then have a quick and severe relapse and die suddenly. i could go on and on for years, in and out of treatment, until my body slowly becomes resistant to all the drugs thrown its way, and the cancer finally takes ownership. i could also go on for years and years and be okay, like that one story about your co-worker's friend's aunt's sister-in-law's daughter. that is the way this thing works.

And even if cancer never actually comes back, the possibility of its return takes up some serious brain space for a good long time if not forever. People push it away, say they've "beaten" it (cancer fucked with the WRONG bitch is one such t-shirt phrase i've seen), but the thought of its return, even if very tiny and relegated to a corner, is ever-present.

Does that mean you give up trying to stay alive? no. but you give up the notion that there's any kind of "winning" (for lack of a better word) to be had. you may survive it, outlive the statistics which are based on very old data for the most part, anyway, but always you know that living can be taken from you at any moment. Isn't that true for everyone, taffythief? Yes, yes it is. But the chances of it happening to a person with cancer, or a person who had cancer, are significantly higher.

Don't tell me, well I could walk out my door and get hit by a bus as a way to make me feel better or more included in regular life. technically yes you could. But your odds are significantly less, and you should acknowledge that before speaking. (oops, hit a nerve there).

On my drive to the infusion center tomorrow, I will pass this old-looking church, denomination undetermined, who has had this sign up on their front lawn since March: be not afraid. so I'll go with that for as long as I can.