Expectancy

Well, first of all, it absolutely was the steroids giving me that freakish clarity before. I'm happy to say that I'm tapering down on them and am at about half that dosage now, looking to be done by the end of the month. 

Second, I was wrong about what happens going forward with the trial. If I'd had just one incident of colitis, we could gradually re-introduce the investigational drug that they believe to be the culprit. But because I had two incidents, the trial sponsors recommend that I not receive that drug anymore, at all. I know it makes sense, it's all about safety, but when you're trying to you know, stay alive, sometimes you think you'd forgo a little safety if it meant more years on earth. Not that I'm going to. Just saying.

Realizing this yesterday had me really down in the dumps. Another option off the table. Who knows if it was the combo of the 2 trial drugs that did the work on the cancer, or not? I might continue to be stable on this one drug. I might not. No way to know. But it feels like a loss. I can't say my body betrayed me; if anything it's vice versa -- I put something in it that it did not like. And yet, the desire to find something, anything that's going to get a grip on this for years, not months, is so strong, that it still all feels like shit. 

The powerlessness of disease comes to the forefront again. The disease will do what it will do. And my body will react the way it will react to each specific thing I do, and there's not predicting any of it, and the fact of that, the fact of that being in my face all the fucking time, it's a lot. I will calm down and I will remind myself what is going well for me, what i do have, and I will get back to a place where I can think more rationally. But right now I'm just angry all over again. And scared. 

Monday I have a previously-scheduled CT scan, along with a GYN exam with someone from the surgical team who is basically just looking to see if there's you know, any new growth. Fun times! We aren't expecting any changes on the scan, given that I had one during the whole colitis thing, and at that time (a few weeks ago), nothing looked like it had changed. But honestly, nothing will surprise me. 

I think I'm sounding all negative and I honestly don't mean to, but I guess it's where I'm at. All this unknowing just does a girl in sometimes. Maybe I'll share a poem with you to finish up, and come back when I'm a bit more peaceful!

  

 expectancy

the owl refuses to dispense any wisdom

but has a few questions of its own:

what exactly is your elegant emergency? 

the wrench in your otherwise outstanding plan? 

.

the owl’s eyes are neon. the tree he inhabits

so  lovely & upright & full of its own spine

it is almost unbearable. so sure of its roots. 

don’t ask how much time you have left. ask 

if you are fully enjoying your tiny house of secrets 

because you know we all betray ourselves somewhere. 

don’t ask about years. ask what any animal is thinking 

as it becomes the owl’s dinner. ask about the blur, 

the sudden shrinking view of outer space you get

while on your back in an old camp tent,

its ceiling cut into to allow for windows of sky.

Clear & freaked out (in a good way)

 So I've spent the past week as you know, recovering slowly from the bout of colitis. It is a long, 10-mg-steroid-tapered process, but it is working. 

I've thought A. LOT. even for me. And I know that once I get back on the clinical trial, I have a 50/50 chance of having another colitis flare-up, in which case I am off of the clinical trial, and looking for another treatment. It scares me of course, but something is happening over here: my general outlook on things is evolving. It's freaking me out a little, if I'm being honest.

Clarity: I can't go to that 50% place of darkness, not now. I have to go day by day, listen to my body. If it becomes inflamed again, well, this is not the drug for me, even if it does keep the cancer in check. If it doesn't become inflamed again (because it turns out there's also a 50% chance it won't), on we go, into the great blue investigational-agent yonder. 

More clarity: all this time dealing close-up with my own mortality has really helped me focus and edit. There are 2 things in my life (besides friends and family, people, duh) that give me pleasure and purpose: one is writing: I think this is what I have to offer the world, my small gift, something that could be of use to others. The other is baking -- it's not quite as important or noble in its quest as the writing, but the process of it is calming for me, and the results often make other people very happy. Right, so these tare my focuses/foci. If it's not about writing or baking, I'm not bothering with it or about it. 

One thing I did while recovering was get a new Kitchenaid mixer. The one I have now is about 25 years old and I've never cared for it all that much -- it was a present from an ex, who deliberately bought it for me in the color HE wanted (red), instead of the color I asked for (buttermilk yellow).  (He was 23 at the time). But it has worked this whole time and so I've used it. My birthday falls at the end of the month, and so I let my beautiful spouse buy me a new one (birthday/xmas/hanukkah combo gift) because,  life is short get the mixer you want right? 

My first project with the new mixer will be to bake a retirement cake for Mrs T., a lovely friend of my sister's, and a fellow labor & delivery nurse at the hospital. She started working there as a candy striper when she was 12 years old, went to nursing school, etc., and now is retiring at 70. She has been such a good friend to Lisa, and so kind to me and to the rest of my family over the years,  and it really feels like an honor to be able to bake for her. To give something back.

And that's where the clarity gets like, super clear: It's time to give back. Right now, today, I am not sick. I feel good, I am good, and I mean to focus my creative energies on pulling together my poetry manuscript, and on baking for other people. That's it. That's the message. 

By default, my mind would like to explore every dark rabbit hole of the reason why I might be so clear-headed, and of what might happen if I become sick again and oh shit, not now, not when I've got the new mixer and about 100 poems to whittle into shape. But I am not exploring. And I am able to hold myself from doing it, mostly. I guess my mind is also getting stronger these days. I don't know.

Reader person, do you know me? You know this is not me. It has almost never been my M.O. And the sense of calm that comes with it? FREAKY. But here I am. 

Let fury have the hour(s)

 Reunited, and it feels so good .... this is the little song lyric I'm humming to my orange velveteen sofa this morning. last night i finally came home from a week on the 11th floor oncology ward, dealing with what i went in for about a month ago, but which never seemed really to resolve. last week it reared its ugly head once more, only the head seemed much bigger and more ferocious this time. 

so last time, we thought i'd developed colitis from one of my immunotherapy drugs (as more than 2/3s of patients take immuno drugs do), and it *was* that, but at that time it had not just you know, come into its fully and lustrous glory. holy smokes, what an unpleasantness. 

i'm not getting into the specifics here-- too gross even for me. so if you know a poor someone who suffers from this or from Crohn's disease, please ask them, or just google it and then curse me for you letting you in on it. 

i think i kept expecting the painful cramps to somehow resolve themselves, like, how exactly? i don't know. in some kind of magical, non-morphine way? and when it didn't resolve, well, that just jacked up my anxiety something fierce, and have you ever met me? my regular, normal anxieties are formidable. 

but once they did many tests to rule out the possibility that this was any kind of infectious disease, i was able to start a course of steroids to stop the inflammation, and get off morphine and back onto tylenol or whatever.  (wait, don't steriods suppress the immune system, and isn't suppressing the immune system the opposite of the trial drugs are trying in part to achieve? Yes and yes. but here we are.) 

apparently a short course of steroids will not "significantly negate the efficacy" of the trial drugs. assuming the steroids do the trick on their own. if not, you get a one-time application of yet another immuno drug, and the combo usually does it. but that 3rd drug may or may not alter the efficacy. OMG whatever. i am feeling really teenager-y about this all right now. 

next question: do people recover from a colitis flare-up and then safely return to their drug trial? Yes they do. And of those people, about how many have another flare up? how many never have colitis again? i'm sure you can't guess: it's 50/50! It's a like a Russian doll set of unknowns, this whole stupid business. 

alas, if you return to said trial and do happen to get colitis again, well, the jig is up. you are out of the trial. and that makes sense, right?  no medical professional can claim they're "doing no harm" if they continue you on a drug that does that to you. no one wants to end with a GI bleed, am i right? even if the drugs that cause it are the ones saving currently saving your life. 

this is the kind of stuff that shakes me up the most, i think. like if i'd happened to break down that kind of scenario into small pieces at any point of reasearching the trial, i would've have come to the same conclusion. but i didn't break it down (did anyone?) and then i was there feeling like hellfire, being reminded again that so many of the key crucial details that direct my life are not in my control. 

I can change my diet drastically to be so kind to my colon, but it only matters a little. It's not my body producing the effect, it's the drugs. they'll do whatever the eff they want to do once they're inside me.

people living with cancer and many other illnesses generally come up with all kinds of ways to distract our own dark thoughts. and if we're really good, we get some decent mileage from them (i, for example, "enjoy" trying to master laminated dough. it keeps me very very busy). but it still pisses me that we don't get to decide how many miles. just around the corner is some grim fact to realize or reality to be reminded of:  that in some ways, even our magical thinking is not entirely our own. 

i spent many hours awake at night in the hospital (because steroids) listening to my roommate snoring (wait what, you have a roomate? and she also has something related to colitis? you guys at least have your own bathrooms, right?) wishing someone else could feel this even if just for a few minutes: the white hot fury forged from every bad scan, terrible doctor conversation, and helplessness of every time you sat in your car screeching every unanswerable question to the steering wheel. wishing someone else could feel this and know that they can't back away.

but maybe you've felt this kind of rage & intensity already, about something else (cancer doesn't have exclusive rights to it as far as I know), in which case, I feel you, let me give you a well-masked, distanced hug. 

thanks for hearing me out. this was a rough one. i'll check in my with trial doc in a few days and talk about going forward. so far it looks like i will be able to continue on the trial but i am sure there's lots more to learn around all of that. stay tuned hahahaha.

cancer still holding steady, no growth. so, worth it.