“You got this, Nonai!” I’m bending down ever so slowly to pick up a pencil that’s dropped to the floor and Josie is cheering me on just as she would a teammate about to execute a backwalkover backhandspring on the balance beam. “Good job, Nonai!” she says, as I straighten back up, pencil in hand. She gives me a high five.
The improvements are subtle, but they’re definite. Starting about five days after the first cyclophosphamide infusion I began to feel a bit more control of my trunk muscles. By last week, I could feel the right hip muscles that I haven’t been able to get at for months. They’re very weak, but when Miranda (my PT) tells me to flex them in order to keep from hyperextending my knee joint, I can kinda do it. Most days it seems that I have a little more flexibility in my fingers – I put Marian’s housekey on my keyring and I don’t think I could have done that a month ago.
None of this has translated into major functional improvements. Miranda says she can see the improvement in my gait – if she squints. I can feel the difference, but getting from place to place isn’t any easier.
Still, I’m encouraged. I had the second infusion on Wednesday. We’ll see over the next few days if there are any observable effects from this one.
Marian and Lynn were in Las Vegas for the Gymboree annual meeting, so I stayed at Josie’s house, getting her to and from school and gymnastics, making sure she got her homework done. As we’ve said before, she is my medicine and it was quite clear that we were doing equal parts of taking care of each other.
At the gym I stand by the rail watching her and her teammates fly through the air while I work on lifting one leg and then the other (“I saw you doing your exercises while you were watching me,” she says when she finishes up). I think it ought to make me feel bad to watch them be so impossibly graceful and limber when I can hardly walk – but it doesn’t. I just feel joyful watching them and amused to find myself in this situation.
I can’t explain it, other than with the echo of JoBug’s voice in my head, “You got this, Nonai!”