Sunday, March 23, 2014

Wings are singed like Icarus to fall, what's left is a shadow of it all

So this is the rhythm of my days:

Wake up between 5:00 and 6:00, earlier on work days and later on the weekends. Do my morning stuff and head out for NIH.  If it's a work day, I'm carrying my backpack so I can have both my PC (which I use for work) and my Mac (which I use for life).  If it's a weekend or other non-work day, I just have my purse. I love that my Mac will fit in my purse.

I go through security at NIH, where I have my extended visitor's badge scanned and get let through the patient & visitor's gate. If it's a weekday, I drive up to the Clinical Center (building 10) and let the valet park the car. If it's a weekend, I drive around to the parking garage under the building, submit my car to a security inspection, and park.

Amusing note about Building 10: the half we're in is the Mark O. Hatfield Clinical Research Center. Mark Hatfield was an Oregon Senator. A piece of home.

I take the elevator up to the 3 NW inpatient unit, which is where Jay is staying.  His mom has been doing the night shift (although that will end when she goes home Tuesday), so I say hi to her, and to Jay's dad, if he's arrived before me.  He and I share the day shift.

Then it's a day of doctors and nurses popping in at what seem like (but probably aren't) random intervals.  Meds, both via IV and via pills, are administered. Food is ordered as Jay wants it. Jay goes between sleeping and sitting up to talk and connect. We walk around the ward as often as he can manage it.

On workdays, I'm doing my best to get whatever needs to be done that day done in between caregiving needs, the latter clearly taking precedence.  If I'm on deadline, I'll either stay in the hotel until I'm done and then come in to NIH, or I'll excuse myself to go out to the work carrells that are outside the ward at the atrium.

On non-workdays, I play on my computer or read. Yesterday, I spent the day working to reproduce Jay's cancer email distribution list in my Gmail, which was more of a challenge than I anticipated. Today, I have a Genius Bar appointment, which will take me out of NIH for a while in the late morning.

Lunch is in one of the 3 cafeterias in the building, unless it's a weekend, when there's only one cafeteria open.  The food is decent, but not great.  My joy during the week is the choice between sushi (smoked and cooked [e.g., tempura rolls], nothing raw) and the Austin Grill outpost that works kind of like a Chipotle.

Then, somewhere between 4 and 6, I'll say goodbye to Jay and whoever is still in the room and head out to a quick dinner and then back to the hotel room.  I'm usually utterly exhausted and get to bed early.

And start all over again.

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