scantankerous

tomorrow another scan day is upon us. every 6 weeks now for the trial. i feel many things. on the one hand, nervous, because as you remember i had that allergic reaction to one of the drugs at the beginning of the cycle, and so, did not get the full dosage of that drug. on the other hand, i feel semi-ok, because the drug i get every 2 weeks is still a tumor-fighter, and also, i had such a positive scan #1. immunotherapy drugs as described to me are supposed to work well after the time you've received them, so there's that too. 

BUT IT'S A SCAN. scans regardless of one's cancer status, are nerve-wracking buggers, as we've discussed 😐. any scan can show the disease going any way at any time, no matter the last one. the reality of one's lack of control is underscored every time you get one. not making a big deal of it in your head requires some serious mental gymnastics. 

so scan day is monday and cycle #3 with both drugs begins Thursday. for the allergy-causing drug, they'll likely give me a benadryl-sterioids-anti-nausea aperitif (hehe), and then have said drug drip much, much more slowly into my system. it should be okay, i've done this before (see: 2020, carboplatin, desense), and this time it will not be so intense that i'll need a nurse to sit with me for 12 hours to make sure i don't go into anaphylactic shock (i never did, by the way. the worst that happened was a rash on my arm). 

today i'm working on not getting too keyed up for any of this. i've learned over the last 2.5 years (fuck!) to put some weird blinders on, grit teeth, and just march on through this stuff because, honestly, what is the alternative? you do it because you have to do it and because at the moment it seems to be working and you want that to continue, or, at the moment it is not working and you want things to turn around so how else will you find out what happens?

today i'm working on not imagining landscapes where a figure of myself appears and then fades away. isn't that weird? it actually sounds the setting of a 80's music video when i type it out. i'm also trying to come up with a better term than "scanxiety" to describe this feeling. "scanxiety" is cute, but doesn't really cut it, in my opinion. "scantankerous" gets a little bit closer... 

Enjoy every moment, dammit!

 Of all the many many ways life is different now living in the cancer world, the one that, in a weird way seems the hardest, is the waking up part. I can't speak for other patients, of course, but the first thing I think about when I wake up is that I have this cancer. Not, what's going on at work today or wonder what the weather is or do I need to buy more toilet paper or whatever..  

I don't say this as a ploy for pity -- but to try to express how all-encompassing it is, whether or not a person is in pain or has a doctor's appointment or a scan or anything. It's just like, you wake up, and for a split second wonder if you might not have cancer, if it's all been a nightmare or whatever even though you know it can't be at this point, and then you lock into the fact that you have it. As in, this is how my life is now. This is no longer an experience I had, a tough time in the past, but a new way my life is. It's like against my will I've moved cities, changed jobs, completely eradicated the famililar, and now I have to learn how to navigate it. It's a weird feeling. 

Last week my husband took the day off of work to come into the hospital with me for the next infusion of the drug I had an allergic reaction to. Except it turned out that I mixed up which drug gave me the reaction and which did not, and so, that day's infusion went quickly and easily. So I only get the scary drug every 6 weeks instead of every 2 weeks, which is obviously a relief.

Since having that infusion, things have been going ok -- for side effects, I occasionally have a headache or a short wave of nausea, but it's not even bad enough to take medicine for. I'm doing my freelance work, trying to work on updating my website even though I'm not looking for more work, and occasionally driving an hour or so to visit my Mom. Also lately, freaking out a bit about the Delta variant, but that's another post, I guess.

So this is good, right? This is what cancer patients want: a life of days that are so normal you almost forget that you have it. These are the "moments" all the doctors faff on about enjoying. Enjoy every moment even more now because your lifespan has been substantially shortened! I understand the good intent behind it, and also the importance of trying to do that, trying to partition your brain successfully so that you can to some extent do that. But that shit is seriously hard.

As a super-sensitive poet-type, compartmentalizing my emotions has never been high on the Personal Skills list. I'm still pretty bad at it. How do you walk through the world, savoring its goodness while understanding that your time to savor its goodness is very limited? You don't really. You tell yourself you can't really know what's going to happen (I mean who would have guessed that some clinical trial drugs would supercharge your immune system to the point of crushing out lots of your disease?), you tell yourself this and you get on with mundane tasks, trying to keep the heavy thing as far back in your head as possible. 

here is a poem I tried writing about it (warning: work in progress!):

enjoy every moment

who knew the hardest thing of all would be to co-exist,

to savor each ineffable minute and honeyed shadow

on each other’s faces while the very minutes tick down,

while the sun is off igniting other places? 

this is not about just disease but earth, currently

midnighted by fire after fire, and with the wild sky, 

forced to forfeit its porcelain blue for a choir of salty grays.

the hardest thing of all is to ask the brain to partition 

when you know there’s no honest escape. 

while flames imprison forests, and air chokes the cypress, 

and the wrong cells keep dividing in the body. 

how to show life you love it, prove you still belong here.

how do you enjoy every moment without pretending that 

what you know to be true, inexorable and inevitable, is not?