This post is totally different. It is my own recent experience, not related to Emmanuel AMC. For the last couple of days my thoughts have been linked to my body. This is because on Sunday, Brian and I drove to North Carolina, and this morning we went to Duke so that I could have an MRI scan of my brain.
The ending: the tumor has stayed the same size, or there is a good chance it is shrinking. The medical team was very happy with how it's doing.
I approve of the happy ending. It continues to be my truth that if I make it through this chemotherapy, my body will become stronger. I will be able to live longer for Maybelle and, clearly, that's the success that makes chemotherapy worthwhile. I feel like I can put up with anything as long as the tumor is shrinking.
I haven't had any ambiguity around that, thank goodness. I'm not having to fight myself into that. But even so, taking the drugs I'm taking does --as a loved one in my life put it--suck a penis. Or with even more emphasis, it sucks a monkey penis. The medicine has the good effect of keeping me from having seizures, but it has resulted in the following revelations at different times in the past few weeks:
- I feel like shit.
- Damn, I don't want to have to swear so much in order to feel like a human.
- No, fuck it, I don't think I have room to feel like a human.
- Am I mostly angry or mostly terrified?
Chemotherapy is lots of work.
Other components of the brain tumor: the chemo I'm taking is working well on letting the tumor molecules and cells and other components drift away from my brain. That's wonderful, of course! But I'm having the experience of my speech getting affected in somewhat dramatic ways. For instance, my chemo started in October, and in the early months, I was hearing changes, but friends would say, "No, you sound just like me! You don't sound different." Now that I've been on this chemo for eight months, those friends say, "Yep, there's definitely a change in what you're saying."
My brilliant, amazing nurse practitioner wasn't surprised by this. She said that my ability to speak has been changing, but at this point I probably won't lose any more language or ability to speak. She said I'm going to become more and more tired. That I might decide that I want to teach class and then nap.
I'm in the process--the beginning parts of my processes--of identifying what's going to be most significant during the fall semester. My ability to speak won't have gotten worse (hurray hurray hurray), but I'll be so tired. My teaching is--as always--a crucial component of my talking, reading, and thinking. But this semester I'm not sure what to do with that exhaustion. Can I read three things a day to keep me in the loop? Do I have my students play a crucial role in guiding the class? I don't know what this is all going to be like.
So there you go. Driving to and home from the trip, journalists talked about Charleston. People from all the world want to see the grief. As we learn more and more about the murderer, it's becoming clear to me that the people who've bee saying he's a terrorist were right.
It matters. And it's so odd to be in a place in the middle of the the world: groups that are determined to make it matter, to make sure that the world changes in meaningful ways after nine people were killed for daring to worship while black. And in another place, I'm a small person whose brain we discuss every six weeks.
What does it mean? A group surrounded by love in a church? Me, with a tumor and needing an MRI?
There's no comparison. It's felt so odd for me, like there's not space in my mind to deal with these two difficult realities at the same time. But if I breathe and allow myself to experience them both, it makes a difference.