A trip to paradise

Winter and the Waning Crescent of the Moon of the New Year

Extraordinary Time

Sunday gratefuls: A calm day yesterday. A travel day. Light, beautiful snow all day. Bruce Lee. Warrior. Writers. Painters. Sculptors. Poets. Musicians. Dancers. Actors. Great literature. Pretty good literature.

Another night from 8 pm to 7 am. All the way through. Guess I’m tired. Wonderful. Dreaming. Rigel warming my back. Kate asleep and peaceful. Kep dreaming.

Kate and I talked yesterday about an issue first raised to me by Steve Miles, a former friend and bioethicist, a physician. When I first knew Steve, he was in medical school and had devoted a lot of his time to care of his grandfather. While in that role he began to consider this question: what is health in a dying person? Bit of a mind-bender, that.

We modified the question. What is health in a chronically ill person? Like Kate. Part of it is simple: calm, disease not worsening, able to engage functions of daily living.

Part of it is not easy. How do you integrate the fact of losing capacity? When you can no longer do the things you loved? Like sewing. Going out to eat. To concerts. To sewing groups. To synagogue. Like walking easily across the floor or upstairs. Yet her mind remains sharp. Crosswords still come easily. Word finds. Solitaire. Dissing Trump.

Kate had almost a month of what we call good days. Little to no nausea. Fatigue level normal. Some desire to eat. Enough energy to play cribbage, Sherlock Holmes. Now she’s had an almost equivalent length of time with a low grade fever, intense fatigue.

So what is optimal? What is health for her? What’s the best we can expect? Seems like that month of good days might define it for now. So health means she has enough energy and stamina for getting up and down the stairs, enough desire to eat, to have some meals. It means she’s not so fatigued that bed is the constant.

We’re getting her higher caloric density feeding this next delivery. It might help. Give her more calories in less time. Perhaps some more weight, some more energy. Perhaps the stoma site could heal even more.

2014

These are not easy conversations, but they’re necessary. Imagining an impossible goal means always measuring each day by its defeciency rather than by its sufficiency. Yet not hoping for better risks settling into less when more is still possible. A tough see-saw.

Meanwhile, in other news. Murdoch has a plane ticket for the 21st of January. First stop, Seattle. Then, on to Oahu on Delta. He’s cargo. Out of the snow and into the surf. Can you imagine? What will he be thinking? Leaving a cold Colorado, crated, in the dark. No place to pee or poop except in the crate. Then, into the light, a warm to hot Hawai’an island. Mom and Dad! What a transition.

Oh. And this just in. Kate’s feeding tube popped out. Not the first time. But… Geez.

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