Morning is broken

Break & chat, by Roberto Ciucci on Flickr, licensed under Creative Commons

I had such high hopes. I took some Benadryl before shutting off the light. I took the children’s Benadryl, the only one we had in the house. I let the viscous red liquor slide into my mouth, pretending it was a magical elixir. It felt ritualistic. Then I lay down and waited for the effects. I felt my hands get heavy first. It was the most delicious sleep and it was coming and my arms were splayed open to accept it.

At some point I woke up and looked at the curtain and decided I’d slept until DAWN! And that, unfortunately, wasn’t the case. It was about 2:30 and I’d been once again robbed. I spent some time on my phone. I tried to go back to sleep. Then, a sharp pain on my head, in a new spot, had me worried it was a seizure, so I popped a Lorazepam. I asked J to check on me after a while (meaning he was up too). The pain went away, but the sleep went away too.

The pain went away but we’d started talking and I went back into roid rage mode, taking J to task for not telling people how they can help him. I’m trying to be his pimp and find basketball game nights, people he might want to play music with… but it needs to come from him and he doesn’t have a ton of energy to devote to finding people to do stuff with right now and I called him a stubborn mule several times and finally shut up. The narcotic had minimal effect as sleep aid, maximal effect in turning me into Nightmare Spouse.

This morning, while stumbling but determined in the kitchen to make myself a kale omelet before all the kale went bad, I went a little woozy from lack of sleep and said to J, “I think I might fall down flat on the floor here.”

To which he clumsily replied, “How can I help?”

That produced for me an image of him trying to knock me flat to the ground and I told him and we spent 20 minutes cracking up.

Roid rage, dinner edition

Stoned scream, by giorgio raffaelli on Flickr, licensed under Creative Commons

We decided on a family dinner tonight, with the grandparents, out at a neighborhood place we haven’t been to in a while. I did remember the last time didn’t go well for Young J, or really anyone in the establishment who was hoping to eat.

Tonight wasn’t the night to give it another try. As I approach mealtimes, my planning gets poor. I have to take steroids with food, but if food is not forthcoming and I have to graze on baby carrots or something in order to eat? Forget it. ¡Sálvase quién pueda! I get testy.

Young J just finished a two-day battery of his first standardized tests. He was, by all accounts, a total trooper. He even took time to reassure his teacher with thumbs-ups and smiles during the proceedings. But he looked really zoned out and tapped out tonight, and I was so happy to think this sort of ordeal for him may be less frequent because of where he goes to school. I hope so, anyway. Way to take all of the joy out of a school day. I told him, “Tomorrow, back to the fun stuff! Learning!”

Young J ordered a burger. They messed it up last time, and they messed it up the same way tonight. It took two other people’s dinner choices to satisfy him. The waiter seemed to fault our ordering sequence for the fact that everything was going wrong, not the fact that he seems to perpetually wear some homemade jeans that seem to weigh a thousand pounds, which impede swift waiterly motion. The food came to the table so haphazardly it seemed like it had been designed as a case study at a hospitality school.

I got my burger and worked at it. Also not great, and it kept falling apart. But I was most annoyed by Young J’s failure to enjoy a meal because they’d messed it up for him. AGAIN. (First recorded instance of roid rage by proxy?)

Nurse Practitioner K called earlier. I’d had some weird little red itchy bumps show up last night, interrupting my regular insomnia with some panic-variety insomnia. Another reason why I love my medical team is that to answer a question, I am respected enough to hear this: “In order for me to explain the bumps, let me explain how the BRAF pathway works in melanoma, and the specific mutation you have.” They know enough about me now to know I want this, that I don’t just want to know what to do about it, but why it’s happening. When you’re going through a treatment like immunotherapy, that at various times can make you think of science fiction or Alice in Wonderland, it’s nice to have things explained. And you can feel a moment smarter. (Do not ask me to repeat the full explanation to you now. I had it for about five minutes.)

In this case, there’s nothing I need to do unless it itches. I’ll just watch stuff erupt and disappear and know this is all the drug at work, hard at work, turning me trained assassin.

I left the restaurant before everyone else, to escape the chaos and the waiter of the big pants, once I saw Young J eating pretty much all of Mom’s dinner. It was good to walk outside. And, I had a mission. Get home and get some last good eating before the evening drug moratorium sets in. I had this.