Tuesday, January 21, 2025

Living on three levels

The surface. The "normal." The hey we have to do work because we have bills and this is what we do, the normal everyday stuff.

The macro. The world. The "wow things are actually extremely bad and not in a "I'm overreacting" or "This is hyperbole" way. Climate change (which begets the fires we see more and more, hurricanes, extreme cold conditions, etc etc), AI encroachment (which poisons the technologies we use and sucks up resources that living creatures need to live), politics (the richest man in the world did a Nazi salute TWICE at a presidential inauguration and the mainstream press is trying very hard to not acknowledge that), genocide (here and abroad), the targeting of the marginalized (especially trans folks), COVID, public health being gutted in the United States, bird flu, just an endless list of the horrors. 

The hyperpersonal. The "I just need a little more time." I just need a little more time. I just need to outlive my parents and my cats (or at least most of my cats, as one of them is a baby). 

I think about all of these every day but I try not to do it in a way that keeps me from living my life and moving forward and doing what I can in these times!

Saturday, January 18, 2025

Zometa infusion 2 update

So far it is going a lot better than the first infusion. I took Tylenol beforehand and have been taking it fairly regularly since the infusion to control pain and I'm feeling a lot better than I did last time. I still have some bone and joint pain and I definitely will be resting a lot this weekend but I can move around and I'm not miserable and that's awesome. They also recommend taking Claritin (which I take daily for allergies anyway) so if anyone out there is getting Zometa infusiong, maybe something to keep in mind. 

Friday, January 10, 2025

Reflecting on treatment after some time has passed

A year ago, I went to the hospital to get mapped for radiation (this is where you go in and they figure out exactly how to position you for treatment, and they put three little positioning tattoos on your body so you're always lined up perfectly so the radiation is only hitting the places they want it to and nowhere else, because the amount of radiation it takes to kill cancer is really bad for the rest of you). A year and a half ago, I was halfway through my first round of chemo (AC chemo, the second round was Taxol), going every other week and getting bloodwork to make sure I was healthy enough to continue receiving treatment. Two years ago, I didn't know I had cancer.

I wasn't that upset about the cancer when I was going the process of diagnosis and treatment (I was upset! I was not AS upset as people expected me to be). I think it's hard to engage with the thing in its fullness when you are experiencing it, because you need to move forward and through, and if you look at it too closely, it's overwhelming. 

I say this like I'm done with treatment, which is, of course, not the case. I take anastrazole every day, I still have three Zometa infusions to go (I get them every six months and while I am getting them, I have to get bloodwork to make sure my kidneys aren't being damaged by the drug, and I have to take very good care of my teeth, because Zometa can cause osteonecrosis in the jaw and I have been assured that this is very bad). The first Zometa infusion was fine the day of treatment and then terrible for the next few days. Bone pain, everything hurt. My doctor has told me that people usually do better with subsequent treatments, and suggested I take some Tylenol beforehand. It doesn't matter, I'm still going to get the infusion. It's next Friday, and I am dreading it. 

As for smaller things, I have carpal tunnel from the anastrazole (a body prefers to have estrogen! it takes a long time for the systems of the body to adjust to life without it) and this presented some challenges when my city got a foot of snow in 24 hours. I definitely feel it in my wrist and elbow on the right side, the cancer side, but I have a wrist brace and an elbow brace and compression garments and it's not bad. Sometimes my joints burn but I've gotten used to it. Surgery last March also included an oopherectomy and a total hysterectomy, and recovery was more difficult than I had expected given how relatively easy the recovery from the double mastectomy (in November of 2023) had been. I wondered while shoveling if I'd feel the strain more in my abdomen, as internal structures take longer to heal than you think (it was fine). You don't get back to normal so much as you discover the new normal of your life. Anyway I can still shovel a driveway, even if I have to take a few more breaks to do it. 

This is obviously not a full accounting of the ways that my body is different. That would be a tedious list. As time passes I move farther from the body I used to have, and the tension between the memory of what I was once capable of and what I can do now eases. It still hits me from time to time. 

This culture pretends that we'll live forever at the peak of health, and we don't talk about how to handle what happens if something happens. I am here to tell you that something will probably happen. And the sooner you make your peace with the idea that your body might not be the way it is now, that you might not be as strong or as sturdy as you are in this moment, the easier it will be for you when your situation changes. The kinder you'll be to yourself when you reach whatever point that is in your life. The kinder you'll be to the people in your orbit when their lives change. I can't do all the things I used to do. I'm not as strong or as sturdy as I used to be. My life is still meaningful and valuable and good. 

There is a book by Brian Fies called "Mom's Cancer." It's a graphic novel, and he made it while his mother was going through treatment for stage 4 lung cancer. I did not re-read it when I was diagnosed, but I read it again tonight. It's a remarkable book. I was particularly struck by the depiction of things brought along to a taxol treatment. Water bottle, handheld game, music device. I looked at that page and thought "yes, I remember that." It's very matter-of-fact. And that's sort of the whole experience. Your life changes, it's never the same again, you aren't told that it's going to be like that, and you learn a lot of things that you never wanted to learn. And then, if you're lucky, you live with it! Things happen. Then they continue to happen.

I have been very lucky. I am not looking forward to my Zometa infusion! But I am grateful to be in community with people who have experienced this profoundly disruptive thing, to be here to tell you how I'm doing, to recommend this book! (It's a really good one! it won an Eisner, which is like the Oscar of comics!)

Anyway maybe I'll start blogging again from time to time, about things unrelated to cancer. Maybe also sometimes cancer. It's not a thing you really get over. You just do well and you hope you'll continue to do well. So far, I am doing well. I hope I'll continue to do well.