Today I had my fourth OF SIX Zometa infusions! I thought I just had four. I was wrong. I even looked back on the original notes and it very clearly says "6 Zometa" so that's on me!
Anyway hopefully it'll be a mild side effects dose! I've got good Chinese takeout and a heating pad and I'm settled in for the evening.
Cancer truly sucks.
I got my third (of four) Zometa infusions yesterday. I'm out of the habit of going to the infusion center, but it's nice to see everyone and I got the nurse who is the best at finding a vein so there wasn't any bruising afterwards. All of my bloodwork looks good (I had cut my calcium intake in half because I was tired of taking the huge calcium pills, and this risk paid off! Levels are good!) and the Zometa infusion only takes 15 minutes. I was probably only at the hospital for a couple of hours, which is a very nice change from chemo days (where I would be there for 3-5 hours, easily).
My NP told me that my reaction to the first treatment (which was absolutely horrible with a ton of bone pain) was very rare, and that Aleve is good for bone pain (and so is Claritin, which I take for allergies anyway). This is good to know, and I took some when I got home just in case. So far I'm feeling good and she said that everything looked great and I'm where I need to be.
I was a little tired yesterday, and I can feel some tiredness today and a little joint and bone pain but nothing that's keeping me from doing whatever I want to do. I went for a little bike ride, I haven't had to take a nap.
There is always a moment when I am waiting for them to get blood for labs where I can't help thinking that I wish I didn't have to do any of this. I wish that none of this had ever happened. I wish I could go back to the life I had before I found out I had cancer. That feeling goes away, but I want to record that it does happen because when I'm farther out from treatments I forget. I will never get to go back to the life I had before.
My life now is great! I am feeling good, I am so happy with the care I have received and continue to received, I'm so grateful that I have access to the healthcare that has gotten me to this point. And, and, and, it's just true that my life is different now. It's not even really worse. It's just different. And I very occasionally get sad about how things used to be, when I thought that I would live forever (even though I knew I wouldn't). That sadness doesn't last. But while I'm waiting for them to find the vein and take blood and see if I'm healthy enough to do the treatment that will make me feel bad but maybe help me in the long run, I can't pretend that it doesn't exist.
Anyway tl;dr: Zometa infusion #3 is done and it went well and I'm feeling pretty good!
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!
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.
Hello, I'm doing well! I have been dealing with some carpal tunnel (known side effect of the medication I'm on), but I got a bike that involves a more vertical posture and I have a wrist brace and those two things have helped a lot. I have been biking (mostly ebikes), I have been cooking more, I am spending a lot of quality time with the cats, and I'm OK.
As part of my adjuvent therapy (the ongoing treatments that I'm doing beyond the big chemo/surgery/radiation trio), I have mentioned that I'll be taking anastrazole every day for five years (and I've gotten pretty used to it, and the carpal tunnel it caused has mostly improved) and I will also get a Zometa infusion every six months for two years. Last Friday, I had my first Zometa infusion.
As with all things, all bodies are different, and there is no real "here's what to expect" checklist for any treatment. Doctors can tell you that there are certain side effects to expect, but because of the aforementioned "all bodies being different," you can hear the words and not understand what's really going to happen to you. This is all to say that I went into the Zometa infusion expecting bone pain ("is this bone pain?" I have often thought to myself when I have a random ache or pain that I can't identify! But not anymore!) and maybe some flulike symptoms for a few days. The day of the infusion I felt pretty good. Maybe a little nauseous, that feeling of "I am coming down with something," but I had plenty of energy and went to a great outdoor art fair in a neighborhood I like. I had some tacos, I hung out with my friends, I wandered around and the weather was perfect.
Overnight, I experienced bone pain. What I had wondered about before was probably not bone pain. Bone pain is pain. In your bones. It's terrible! I hated it a lot. By morning, I could barely move. I spent most of Saturday sitting in the recliner with a heating pad, complaining. It was probably the most painful experience I have had in the whole cancer process so far. And to recap: I did AC-T chemo, I had a double mastectomy, I did radiation, I had a full hysterectomy and oophorectomy. I have done some stuff. And this hurt the most. By Sunday things were a little better, I could walk very slowly around the block with the help of a cane, I could walk around the house without screaming (this is not a humorous exaggeration. Saturday was very challenging), the weather was great again so we grilled in the backyard. Pretty good day. Way better than Saturday. By Monday, still some bone pain, still some tightness in my back, but I could move more normally and I mostly wasn't in pain. I still felt pretty tired, so I'd get bursts of energy and then I'd feel really wiped out. Today I'm still aware that I'm recovering, but I'm good enough that if I didn't want to show it, you wouldn't know. I have three more of these infusions! I hear that the first one is the worst, and I hope that's true.
My occupational therapist says that what she's seen over the years has convinced her that anywhere there's weakness in the structures of the body (old sprains, old injuries, anything like that) is extra affected by these treatments just because of the way they work. Before I was diagnosed with cancer, I had some nerve issues in my elbow and fingers on my right side, some joint issues, some back issues (the MRI suggested that I had arthritis in my spine, and the nuclear bone scan showed a lesion on my spine but the bone biopsy way back last year came back clear), I have an ankle I sprained as a kid, and all of those spots flare up with these treatments. I can feel it. It's so weird.
Anyway, having cancer is not as easy as "well I did these things and it's gone so I'm done" for me! It would be really cool if that were the case, but instead, it's just a thing that's part of my life all the time, and mostly it's ok, and sometimes it makes for a difficult weekend. I'm very grateful to have my partner in my life (he stayed with me all weekend, taking care of me and the cats and also playing a lot of Final Fantasy XIV). I'm very grateful to have the cats! I got a lot of good time just resting in the recliner with buddies. I'm grateful to live so close to my parents, who brought some food over. It all could have been a lot worse, but it also was not fun.
As I think I said in the very beginning, when this happens, cancer, any major health thing, the "oh I wish things were different" is really a "I wish this had never happened to me." But it has happened to me. And it's ok. Despite everything you have read in this post, I'm happy! I never expect treatments to be painless or cool (and I am never disappointed), it's all just a part of my life. I used to have a different life and a different body, and now I have this one. I do not spend my time wishing it were different anymore, because that's both a waste of time and a weird internalized ableism, and I'm doing my best to leave it behind. It serves no one. I appreciate the good days and all the things I can still do.
