It was all very well to say “Drink me,” but the wise little Alice was not going to do that in a hurry. “No, I’ll look first,” she said, “and see whether it’s marked ‘poison’ or not.”–Alice in Wonderland
It has been a week since my first half Ocrevus infusion. Besides some back pain and overall weakness, especially in my legs, I felt pretty good afterwards. For the week between infusions, I was instructed to take oral steroids this morning: twenty-five huge, uncoated pills. My pharmacy called the doctor’s office when it received the prescription, certain the directions to take all the pills at once were a mistake. I’ve only ever had steroids intravenously before this, and taking them orally was worse than I imagined it might be because the pills started dissolving on contact, tasting ten times worse than aspirin. I almost didn’t make it, retching halfway through. But somehow, I got them down and kept them down.
I hate steroids. They help bring down inflammation, certainly, but I try to avoid them when possible because they immediately make me edgy and anxious, my pulse racing. Just when it seems like I’m feeling better again, my emotional bottom falls out, and I lose all sense of reason. Last week, this happened as I was taking my first drink from a freshly brewed cup of hot tea. A fly my husband let in flew straight into my ear, causing tea to spill everywhere, burning my hand. And that was it; I completely unraveled, the way an overtired toddler does but with the rage and fury of a grown woman. Rationally, I knew it was because of steroid withdrawal, but it didn’t make it feel less infuriating in the moment. I had to shut myself in the bedroom for several hours, warning Alvaro to leave me be for both of our sakes. Fortunately, he doesn’t take these swings personally. I think I would, so maybe it’s better to be the person having them.
There was good news today, too. The other patient in the house this summer has been my dog Maggie. She had surgery to repair a torn ACL in May, which was supposed to be followed by six weeks of completely restricted movement to recover. Just over halfway through that time, she started limping because the suture had failed, and the surgery had to be done again, resetting the recovery clock. She has been miserable; normally an incredibly active, independent pup, she did not do well in her pen. When we came home from the vet this morning, I let her off of the leash and out into the back yard on her own for the first time in months. She looked back at me, wondering what was happening, before tentatively heading out into the grass to do a perimeter check. I put her pen away while she was out, and when she came in, she stood in the spot where it had been before she understood that she was really free. When we moved into our house eight years ago, Maggie immediately claimed what I thought was going to be the guest room, and that is where she ran, jumping back into the bed and settling in for a long nap. It feels incredible to have life back to normal, at least on that front, once more.
Before my second half infusion next week, my husband and I are getting out of town for a night. I am looking forward to some much-needed R&R. Meanwhile, I’m riding the steroid roller coaster and hoping for the best.