Most of us have no idea how often we use our pecs

People facing mastectomy often ask me what recovery is like. I think, really, that’s what most of us worry about more than the procedure itself. After all, our only job during the actual surgery is to sleep and we aren’t aware of anything going on. But much of recovery is on us. Walking when they release us to do so, sitting up in the chair for a while when they say it’s okay, making sure to take a few walks around the hospital floor each day while we’re in it, and then, once home, taking our meds on schedule, caring for the incisions and drains carefully, and gradually increasing activity without overdoing.

I talked about the process of getting out of bed that first night and there’s a lot of that in the early days: figuring out how to get out of a chair or recliner or out of your bed, sorting out how to shower and wash your hair, learning what movements you can do and which you can’t. You spend a lot of the first couple of days moving just a little too fast or reaching just a little too far and then pulling back and regrouping. There’s a lot of creative problem-solving involved, too. You realize very quickly how much we use our pectoral muscles for and you’ll probably be shocked. And, as with everything else, your range of motion and recovery rate will vary. Bodies do often recover extraordinarily quickly, however, so what you can do sometimes changes in the course of a day. There’s a lot of trial and error in those early days.

Lots of little things surprised me. I knew figuring out how to get up and down and in and out of chairs would be a thing. It never occurred to me that I wouldn’t be able to pull open the refrigerator door – or that trying would be agony. I tried grasping the handle with both hands and leaning back without pulling, but I didn’t have enough leverage. I ended up having to loop a dishtowel through the handle and then lean. I didn’t realize how heavy a milk carton or juice bottle would be – or how impossible it would be for me to heft the giant water bottle I usually carried all day. Twisting motions were out of the question, so there was no opening jars for weeks and, if my partner had to be gone when I needed my meds, he opened the childproof caps before I left. Pro tip: ask the pharmacy to use easy-open caps. You’ll pick up a metric crapton of prescriptions before surgery, antibiotics, muscle relaxers, pain meds, and more, and if you can remember then, your life will definitely be easier.

The first morning my then-partner went back to his morning gym routine, he thought about how I couldn’t reach over my head to get things out of the cabinet, so he left out a bowl and a packet of oatmeal and the peanut butter jar (with the lid loosened) so I could fix my breakfast. He’d forgotten, though, that I also couldn’t reach up to the microwave or get down on the floor to get out a saucepan, so I ordered delivery for breakfast and the next morning he remembered the saucepan.

The trying task that really took me by surprise was flushing the toilet. It hadn’t been an issue in the hospital, but we both had the button-style flushes, not the lever style, and those take more force to push. I had to place both index fingers on the button and lean my body weight on it and even that was uncomfortable for a few days.

Another thing I didn’t anticipate was how tired I’d be, not just physically but mentally. The physical exhaustion was sometimes intense – and often hit without warning. I’d be doing pretty good, feeling pretty strong, and then that invisible wall would shoot up out of nowhere and stop me cold. I learned very quickly not to try to push through it. Showering with a hair wash was an ordeal, but my hair was and is so long that washing it in the sink really isn’t practical and my scalp gets horribly irritated after about three days without a wash – to the point it can take a week or two to clear. So it had to be done, no matter how tiring it was. The first couple times I went through the shower-hair wash-incision care process, I did it right after my morning breakfast-pills-drains routine and that was the end of me doing anything at all for the day.

I didn’t understand the mental exhaustion until long afterward. I wasn’t working, after all. I wasn’t writing. I wasn’t studying anything. In fact, the stack of books and magazines and crossword puzzles I’d set up in advance stayed largely untouched. Much of the time, I didn’t even feel like watching TV. Even more uncharacteristically, I didn’t feel like thinking. I can hang out with my own thoughts for hours and be well entertained, but I spent a lot of time that first week not even doing that. I wasn’t scheming or daydreaming, not plotting or planning or wondering. I was just sitting there, often looking out the back door at the birds and the pool. This alarmed my partner who said it felt like I was just waiting for the grim reaper to come collect me. But I wasn’t depressed; I was just completely mentally wiped.

Eventually I realized that some of it was because I’d been running at 100 miles an hour for most of my life, so when my body finally got a good excuse to make me stop, it made the best of it. Part of it was also my autism. All the doctors and tests and then surgery and recovery meant a lot of interaction and a lot of sensory stuff. All that makes us tired. And some of it was all the meds, which I discovered very quickly that I actually did need. Another piece was the mental activity that went into figuring out how to do things I’d been doing with ease for almost fifty years. I mean, when you have to strategize how to flush the toilet and open the fridge, that’s work. But some of it was just plain, old-fashioned mental exhaustion from all the pre-surgery thinking and researching and planning and processing. I was tired from staying positive. I was tired from thinking good thoughts. I was tired from making sure I thanked every nurse and food service worker and member of housekeeping who helped me because they work incredibly hard and expressing genuine appreciation and gratitude is part of the person I’m determined to be. It was all absolutely worthwhile, but still tiring – especially with my autism.

The third thing that surprised me is how much easier some parts were than I thought they would be based on conversations with other survivors. While twisting and pulling stayed hard for a long time, I recovered my overhead reach quickly, my incisions didn’t bother me, and I had very little deep pain for the first few weeks. I didn’t have a lot of negative emotion to deal with till other issues arose later; the one time I fell apart it was from straight up exhaustion. I’m not sure how to make this make sense but, while recovering from the mastectomy was hard, it was okay. It was doable. Even the worst parts were doable and the best parts were actually really pretty great.

I guess the bottom line is that, when it comes to recovery, my experience is that it’s both harder and easier than you think it will be – and that you won’t really know which parts will be which till you get there.