I expected this week to be my "best" week: I'd have energy and feel mostly normal. So far, that's true. My heartburn/acid reflux is greatly diminished. I haven't had nausea in a few days (other than when I drank a dark soda -- I think I need to give up soda again). I don't have a lot of pain.
But...
I am mentally a mess.
On Sunday I noticed that my hair is shedding like crazy. It's not like when I did TC chemo in 2017 and lost my hair. In 2017, my scalp felt like I had a too-tight ponytail in and my hair fell out in large amounts, like if I leaned against the back of anything, there would be a big ol' chunk of Amy-hair that remained when I moved away. This time around, it's just shedding, sort of like postpartum hair loss, but a little more. I'm feeling a little anxious about what this means for my hair situation. Will I lose it all? Will I only lose it in places? Am I going to look like I'm a fallout-survivor? What can I use to cover my head as the weather warms?
Since I'm struggling with anxiety, I find that I'm fairly emotional at night, too. I sit and scroll through Facebook, half-paying attention to what I'm looking at and tears just start appearing on my face.
I don't even know what I'm sad about, honestly. The treatment appears to be working because the pain in my left hip is significantly improved. I can keep up with Bo when he's walking. I do get a little winded now, but I think that's from 2-3 months of limited mobility. I need to rebuild my strength/stamina. The muscles in my leg fatigue easier and I can feel how tight they are from lack of us, but my pain has gone from an 8ish (maybe a 4 with Norco) to nearly non-existent right now. This is the best news because I thought I was going to have to do radiation to get pain relief.
And still I cry.
I cry because I am so freaking worried about my kids and their futures. I find myself increasingly aware of how isolated Bo and I are. It's not that we don't have people who care; it's mostly that Bo and I are used to being on an island of our own and it's hard to invite people in. While Bo can talk to anyone, together we're not really "people people." We like our space and our non-routine routine. It's hard to "entertain" people when life is emotionally heavy. It was a lot easier to be around people when we were young and naïve. It's more difficult now because I feel like we're such a downer, like our situation sucks the life out of people. Who wants to be the vampire in the room?
And yet my boys are going to need people. People to check in on them. People to take them to coffee or breakfast or a movie. People to talk to them about their choices and how they're feeling. I have Evan in counseling so that he has a safe space, and I'll get Arlo in counseling soon, too (he's not really ready to talk to someone). I can take care of the "paid-for-support," but I don't know how to ensure that they don't get forgotten later. This is a hard place for me to be because Bo and I have built our whole lives around absolutely not needing anyone to support or take care of our kids. I've prided myself on the fact that we just handle what needs to be done. But I don't want my kids to feel alone whenever it is I die, whether it's soon or much later. I want my boys to feel connected because I know that connection plays such a big role in being "ok".
It's so hard to know all of the "right" things to do, but to still be human, with all of my own baggage and flaws. Here's to hoping I can figure this all out somehow.
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