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.