earth shaking

There I am. Pushing with all my might against a boulder that is not that much bigger than me, oblivious of the massive looming boulder above, in whose shadow I toil. Except if this were an accurate portrait, one hand would be gripping a chocolate chip cookie. Rather, one arm would be cradling a bucket of chocolate chip cookies, and I'd be experimenting with how hard I could keep pushing the rock with my shoulder or hip while maneuvering cookie after cookie into my mouth... while gripping my cell phone, on speaker, between my knees, listening to a little song while someone who may or may not be able to tell me anything helpful about Mike's treatment puts me on hold.

(Which is all very apt, since Tom brought the above card over today, along with a tin of perfect, freshly baked cookies).

Last week I talked many times to our employer, a manager at our insurance company, our case manager, a benefits broker, our doctors, our nurse navigator, a patient financial services rep, a medical advocate - that's all the people who come to mind just now but OMG believe you me there were a lot more - and for the most part none of these conversations brought me any closer to what we'd been increasingly desperate to hear about for three weeks, let alone understanding WHAT the HECK was holding things up. I push on whatever boulder presents itself in our path, without much hope of it budging, let alone clearing the way so that we might reach our goal - which, when considered in the context of this endless labyrinthine Kafkaesque shit is so, so simple - getting Mike the medical care that he needs. A leading international expert prescribed it; an independent physicians' review deemed it medically appropriate.

Essentially the problem is that our policy excludes any kind of experimental treatment, yet because of the rarity of Mike's disease there are no treatment protocols. So any treatment is considered experimental. You see the problem.

On Friday we were told that a solution to the impasse is in the works and will hopefully be finalized this week. And treatment starts tomorrow. Serious boulder movement. So why aren't I happier? Why am I still poised and ready for more Sisyphean frustrations?

Beatrice has been having a hard time. She crawls all over me, refuses help from anyone else, whines like a banshee, woke up crying last night, and is generally driving everyone crazy. On Thursday Mike picked her up at school. She fell on the walk home and scraped up her nose.

After that she emphatically refused comfort from everyone, walked into the house, and tearfully announced "I'm going to put my face into the couch until Mama gets home." When I walked in after work, half an hour later, she jumped up from the couch, still in her raincoat, and ran smiling to greet me. Finally. You're finally here!

(An aside: that is a lot of responsibility that sometimes I would rather not have.)

But geez. I want to put my face into the couch until Mama gets home too. 

My mom is fantastic and actually does make most things better. But when I say until Mama gets home I mean until Mama gets home. Until cancer flies out the window, until Beatrice stops whining, until life gets to be outrageously, completely NORMAL and things like after school activities and ear infections and work schedules fill up my worry space again.

I confess I can't imagine it.

I can and do hope for a new kind of normal though, one I can't anticipate with any specificity because I don't know what it will be like. Tonight, for now, I'm in position: ready to keep leaning into hard, heavy stuff to get us through the next round of medical intervention. Wish me luck.