I’m heading back to the cancer center this morning for more drugs. One in particular, infliximab, which is supposed to arrest the colitis-like symptoms that were brought on by my gangbusters immune response to ipilimumab. They want to get me off the steroids. I want to get me off the steroids. Win-win, let’s hope.
While I wait for a callback from the doctor, who somehow neglected to tell me when she called me at midnight last night whether I do or don’t take steroids this morning, I’m going to try to purge my mind.
It’s two days away from my tenth wedding anniversary. What J and I were going to be doing this weekend: spending it in a fancy hotel with a good bathtub. Eating lots of great meals without the kids, wandering around and visiting galleries. Napping. “Reconnecting.”
None of that is happening now. I can’t do any of that – and a bath is the last thing in the world that would feel good to me. I’m living in a state of near-constant agitation, under siege from within, and the only semi-coherent thing I’m able to do is post here. I can spend time with the kids only in short bursts (last night I did story AND lullaby at bedtime and it was very, very difficult). I can barely even get out of bed. It’s kind of awe-inspiring to see just how low I have been laid, but I am rabidly curious to see how quickly I can bounce back.
My relationship with J feels so uneven right now. I can offer literally nothing to him. He is doing all of the giving, nurturing, heavy lifting. I’m transported back to the bleary days after the kids were born, when he was in the same role, just as sleep-deprived as I was but still devoted to making things work. He is a resolute doer, a solver, a fixer of problems. Which makes him, I guess, the perfect match for me, feeling as I do now like an inexhaustible source of new and shitty problems.
At our wedding, J serenaded me with this Dylan tune, which he had sung to me over the phone when we were first dating. I hope that everything about me will stop bringing you misery, babe. And soon. I love you.