Monthly Archives: November 2011

It’s the Little Things

Anyone who tries to say only the “big things” matter has never seen their loved one eating eagerly after months of turning down any food, and not digesting what was poured into their body. They also haven’t seen that person lift their own knee, then lift their leg without any support. Little things, you say? Perhaps, but these are the steps along that journey of a thousand miles we never thought we’d take.
Last Friday Tom developed a taste for Chinese, and we have a very good Chinese restaurant in town. First it was hot and sour soup, then after a few days of that, eaten in small doses, he asked for cashew chicken. That took two days to eat. Especially since he was also eating tapioca, some fruit and (ahem) ice cream.
Along the way he was also moving parts of his body. Foot flexes, pull ups on the overhead bar, twisting back and forth in the hips and shoulders. Lifting his middle off the bed and holding it up.
Doesn’t sound like much, does it? Except he’d been pretty much flat on his back since May 22. After every other surgery he was up and cruising the halls the next day. Somehow this time he hit the bed and stayed there. The nurses called him unmotivated and lazy. The doctors called it failure to thrive. I hate to say it but sometimes I wanted to agree with them.
Until I brought him home, and gave him basic simple food, the opportunity to look out the window, and set the option of survival squarely on his shoulders. He slept a lot at first, and there were days of extreme fright when nothing seemed to work right and I faced a learning curve of immense difficulty.
Then today, with the help of the visiting nurse, he sat up, and we swung his legs over so they could dangle off the side of the bed. Those in bed maneuvers had made him strong enough to hold himself straight with just a little help. So much for being told it would take multiple people assisting for him to ever sit up again.
The little things.
Then there’s my NaNo book, oops, that really is a little thing. Time to stop basking in the glow of the husband getting better and crack down on my word count. I challenged my very clever niece to a NaNo showdown and she’s leaving me in the dust!

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Life: the Good, the Bad, the Wonderful

Three weeks ago today, hospice care delivered a hospital bed to our living room, and life as we knew changed dramatically. The acute care hospital doctors had advised there just wasn’t anything else to do with Tom but “make him comfortable,” since he just didn’t have that much longer. He couldn’t swallow safely, they said. He couldn’t digest food, they said, so he couldn’t take in enough nourishment to heal beyond what he’d already accomplished. Even if he could digest, his appetite was non existent. Besides, they said, survival for a Whipple procedure is abysmally low.
So he came home, where he could look out at the high plains and eat “whatever he wanted” for as long as he had left. He immediately started to eat very small amounts of egg custard, fruit, and non gluten foods, and I accepted whatever time was blessed to us. Except the anticipated two weeks went by quickly, and he was eating more of those small meals. A few blackberries or strawberries. Half of a non gluten toaster waffle. We found out he couldn’t deal with dry food (such as a biscuit) and his digestion wasn’t processing much meat.
Because his digestion was processing. The canned liquid poured into his feeding tube had gone straight through him, do not pass go, do not collect those $200.00. My suspicions of an allergy were dismissed, since this was the most digestible food available.
Yeah, right.
This morning when I asked if he wanted blueberry pancakes (thanks Bisquick for the non gluten baking mix,) he didn’t just say “Yeah, okay.” Instead, after far too long with no appetite, he started to fantasize about pancakes with lots of butter and syrup. Which he got, though the syrup is an agave/maple blend. And he ate most of a small pancake with gusto.
The processing continues now at a regular rate. I know it seems odd to be excited by the end result of digestion, maybe you have to be a nurse or a dog breeder to get really excited about quantity, consistency and color. But anyone who has not processed a meal correctly knows the colon rules.
Today I’m putting a pen in his hand and giving him a pad of newsprint so he can start drawing exercises. If he’s going to heal, he’s going to draw again. In the meantime, in between meals and clean ups and shifting dogs around, it’s NaNo–National Novel Writing, where writers around the world put rear in chair and fingers on the keys to pound out at least 50,000 words of an original novel. I’m working on a book related to the one I just signed a contract for.

Tom's t-shirt design for 2003

Yep, in the midst of chaos, I managed to polish up a second manuscript, and Black Opal wants to publish it.
If you don’t hear much from me for the rest of November, I’m working on my book, or cooking something else that makes Tom happy. Or maybe putting in a few hours with my wonderfully patient employer. Life isn’t perfect, but it is wonderful.

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