Happy New Year

January 21, 2009 at 5:52 pm (Uncategorized)

(I’m back from the realm of technical and gastrointestinal difficulties. But I thought I’d share some writing from my time in the hospital.)

It is nearly sunset here in Montana. From my window, I can watch the sun slip behind the snowy foothills that ring our town. The clouds, which just a moment ago seemed thick and ominous, have been transfigured by the setting sun into golden streamers that look like a Renaissance portrayal of heaven. It is cold, and even the look of the tableau beyond the windowpane is wintry: the roads are visibly slick, snow from the plows is piled in mounds next to the roads, and a light wind is blowing snow off the neighboring roof to create the illusion of a mini blizzard.

I like the winter and the cold, especially as the year turns over. The chill lends an appropriate creaking sound to what I imagine is the giant cog wheel of time slipping into place. It feels right to me that the trees be feathered in snow and the days short during this time of transition. I don’t sense gloom; nor do I fear eternal winter. I have faith that beneath the glittery ice and snow, spring is already launching its campaign. New life is dormant in the frozen earth, but it is ready to uncoil and re-emerge. Similarly, I can feel my plans, dreams, and resolutions for the upcoming year directly beneath the crust of this moment. Even while 2008 lingers in the frozen ground, I am filled with hope for this new year.

Hope is a dangerous emotion to carry around in your heart. If you look at hope cross-eyed, it just might turn to disappointment and then despair. I’ve perfected that progression over the last five years. Hope for a cure; disappointment that my sarcoidosis has had some, shall we say, staying power. And then, I’m in the black zone, where I look at the world through the eyes of disease, and all I can see is my body falling apart, my life reduced, and an early death my likely prognosis. This internal place of darkness is no more “real” or truthful than any Pollyanna-ish belief in the opposite. Like everyone else in the world, I inhabit a place of unknowing, of no guarantees. But I am learning that the secret to avoiding the three-point turn from hope to suicidal tendencies is to hold hope lightly—without overburdening it with specific goals.

It’s strange that I’m writing about hope now. The window I’m gazing out of isn’t my own. I’m in the hospital, where I’ve spent most of 2009, except for an aborted attempt to come home from the clink (that lasted less than 24 hours). No one can figure out what is wrong with me. In a half-hearted attempt at gentility, I will simply say that my gastro-intestinal tract almost immediately converts any food or drink I imbibe into a nasty liquid that must be immediately flushed away. The doctors are testing me (and that nasty liquid) for every virus, infection, parasite, or fungus they can think of. So far, all the tests have come back normal. The GI specialist came to visit, and, being a doctor, he had to speculate about all the awful things that could be wrong with me. I’m sure he’ll chase down those leads, too, so I won’t bother wasting my limited energy for thinking or typing on them. My guess is that I caught a stomach bug, but, given my compromised immune state, the bug is more like T-Rex than a microscopic organism in my system.

I don’t know when I will be discharged. Right now, I can’t even eat food. I am hooked up to two bottles (handily labeled FAT and CARBOHYDRATES in case I get confused) that are keeping me nourished. I want to go home, mostly because I miss Andrew and Jay so much that it physically hurts me. After Andrew leaves from his daily visit, I bite the pillow case so that I won’t howl. No one needs me howling, least of all Andrew, who can’t quite understand why I am confined to this place, instead of being home, doing all the Mom things I’m supposed to. He does take some comfort in operating the buttons on my hospital bed. When he left the other day, I was about eight feet off the ground, and my legs were well above my head.

I am breathing deeply and consciously a lot whenever the panic starts. I remind myself that my current problems probably have nothing to do with my sarcoidosis—the GI snafu is likely just a consequence of getting chemo and Remicade and taking thalidomide and prednisone. Mostly, I’ve been practicing holding onto my hope. Usually I remember to give it room to breathe. I steadfastly refuse to heap expectations on my fragile hope—no specific date of leaving the hospital or on the tests finding benign results. I also try to remember to count my blessings in this new year. If my friend Molly hadn’t been staying with me, and if she hadn’t made me go to hospital when I was adamantly opposed to the hospital, even as a concept (she won – it’s always “interesting” to meet someone just as stubborn as I am), I shudder to think what might have happened to me. I am lucky to have competent and compassionate nurses to help me through this time. I am lucky to be alive, to have the good sense to look out my window and watch night take over the earth and the sky.

I wish all of you, my loyal readers, as well as those of you who found this page after googling a drug name or sarcoidosis, a new year filled with goodness and healing. Most of all, I wish for hope for all of us. Happy New Year.

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Technical (and other) Difficulties

January 12, 2009 at 2:22 am (Uncategorized)

Hi all–

Jay here. I want to thank all of you who have continued to check Rebecca’s blog despite its recent technical misadventures. We did a server hosting switch (hosting server switch? Our lack of technical sophistication can’t have helped) that went awry and put the blog off-line for a bit. But thanks to Rebecca’s Aunt Dorothy, it now appears to be up and running successfully (though – and this is not intended as a political statement – it seems to be working better when viewed with the Firefox browser than in Internet Explorer).

In other, less exciting news, even had the blog not gone down it’s unlikely that Rebecca would have put any new content up on it over the past couple weeks as she’s been in the hospital for 10+ days now with what may be either a virus or a parasite (none of the tests have been conclusive), but in any event has caused the doctors to resort to feeding her intravenously for much of the past week. But she was able to handle toast today with only some gastrointestinal distress, so we’re hopeful she’s on the upswing and will be home (and posting) soon.

Happy new year and thanks for reading.

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