I knew recovery wasn't going to have a finish line before I ever left the hospital.
Some people hear that the surgery will take the whole thing out. That was not an option for me. It was made very clear, so I went in knowing I didn't know how long this would take or what the outcome would be. I was hoping and praying to still be me when it was over. And I wanted to know I could still raise my child healthy, happy and safe.
I'm very grateful. I'm also a planner now, and I used to be a wing-it person.
I have to pre-plan. I have to build in a cushion so I can rest between things and still stay as active as I can. Everything is prepared to be prepared, I guess. That's the best way I can say it.
Some wins are small. I can get to most of my doctor's appointments on my own. I can drive. I used to drive from here to New York and back like it was nothing. Now if I go somewhere far, I know I will probably have to spend the night, so I plan for that. My son is a young teenager now, and I work to keep both of us active and doing things together.
My vision keeps changing, and nobody can tell me if it will keep changing or ever settle down. My depth perception throws me off. A lot of people have trouble with night driving. Mine is a whole other thing and I can't even explain it all.
Some days my energy is normal. Other days I have to lie down and take a nap. I never liked naps, and I really don't like them now. I don't sleep well either. It feels like I sleep with my eyes open. I don't know if that will ever get better. That's just what it is right now.
And there are the question marks. We don't know how much the tumor will shrink, how long it will take, or if it will shrink at all. I can't focus on that. I know I'm doing what I'm supposed to do and I'm trying to be mindful.
I try not to think about it. I stay in prayer, because we can only do what we can do, and I know I'm in good hands. I go to every MRI hopeful and prayerful, and I take whatever comes out. I don't hold on to it like I did before surgery. My biggest struggle right now is the clumsiness, the tripping and falling and hitting my head.
I had to let go of working the way I thought I would. Clock in, clock out, breaks at set times: that doesn't work for me. Whatever I do has to be on my health terms.
The hard one is saying “I can't.” My drive is to try anything I can before I say it. Getting to the point where some things just aren't possible is a struggle, and I'm still working on it.
I want to garden again. I haven't been able to yet because of where I am right now. That is still on my list.
What surprised me is Mockingbird Collective. I thought I was building one thing when I started. It turned into something richer than what I first came up with.
Expect the unexpected. Don't beat yourself up over what you can't control.
Your story is not going to look like anybody else's. I've met so many people who have been down this road, and I had no idea how common this is. People don't talk about it, so you don't know what you don't know. None of our stories or outcomes are the same. Reaching out to other people who have been through it is a real gift. Just don't expect your story to match theirs, or the other way around.
Cherrell