Chronic Town

For a host of complicated technical reasons, I’ve relocated this blog’s address. It can now be found at either http://chronicville.wordpress.com/ or through my new website,
rebecca-stanfel.com. Please keep reading. Thanks so much.

My five-year old son, Andrew, has the most delightful post-dinner ritual. If he has eaten an especially large meal, he rises from the table, hikes up his shirt half-way to his chin, and has us admire his full stomach. “Would you look at that.” he typically asks, patting his round and taught stomach. Like actors following our cues, my husband, Jay, and I say, “That is one full belly. You ate a good dinner.” And then Andrew allows us to pat his stomach, rather like a fine Victorian lady offering her hand to a suitor for a kiss. In truth, the belly Andrew offers for show really is a splendid one. His skin is perfect: not a scratch or a scar mars the smooth white skin; his stomach is free of stretch marks or rough patches where even a sunburn might have changed the texture.

What makes this stomach showing so special is my awareness that it won’t last much longer. In the fall, Andrew will start kindergarten. He will learn from other kids what is “weird,” and I’m pretty sure that showing off your stomach will fall under that rubric. When he begins school, he’ll encounter “peer pressure” (or whatever you call the kindergarten version of it) for the first time. He had a few months of preschool a couple of years ago, before my sarcoidosis became extra busy and infiltrated my brain and nervous system. Once that happened, my doctors piled on one immune suppressing drug after another and told me to pull my son out of preschool or any other group activity where he would inevitably attract the brigade of colds and flus that are as much a part of growing up as learning to write your own name and ride a bicycle without training wheels. In a healthy mother, a cold or two is no big deal, but the White Coats warned me that in my highly immune-compromised state, a simple cold could quickly morph into a lethal, untreatable pneumonia, the kind of thing that killed actor Bernie Mac (who was also a sarcoidosis sufferer).

Andrew’s stomach is so different from my own that I can’t help being captivated by its silky exterior and its equally perfect inner workings. At age five, he has outgrown the food allergies that plagued him as an infant and a toddler. Now, like all other kids, he wants pepperoni pizza and ice cream (once taboo because of a milk allergy that caused hives and explosive diarrhea). He’s also—thankfully—taken over the tasks of elimination. Only occasionally, he’ll call for extra help with the “paper work.” (This represents major progress. A few months ago, he had the laughable double standard of demanding privacy while he used the bathroom—which meant that he ordered us not only out of the bathroom with the door closed behind us, but also out of his adjoining bedroom, with that door also sealed shut—but then, moments later, would holler, “I’m READY!” at the top of his lungs, and then present his ass to us for cleaning.”) I certainly don’t miss soiled diapers and trying to intercept his squirming bottom with a wipe, but his self-sufficiency is yet another reminder of time’s passage, of how suddenly our baby has grown. He hasn’t outgrown his need to announce, “I’m going poopie,” on his way to his bathroom with his books and magazines. Like clockwork, he makes this pronouncement in the morning and after dinner.

Why all this talk of tummies and their unsavory byproducts? Like I said, I’m hung up on the contrast between my son’s and mine. Instead of presenting Andrew’s unmarred façade, my stomach looks a topographic relief map. Nearly five years on high doses of prednisone has contributed to my monumental weight gain—nearly one hundred pounds, and the purple stretch marks that came with it. Unlike my son, who stops eating when he is full and feels no shame when his small belly bulges from a good dinner, I have a lifetime dieter’s wariness when it comes to gauging my own appetite. “Am I full? Am I full enough? Am I too full? Will I completely lose control of my food intake if I have another potato?” are only a sampling of the litany of questions that run through my brain whenever I think about food or sit down to eat. Also unlike Andrew, I would never, ever present my gut for praise. No, unless some dire emergency (and I’m talking real emergency, like to staunch the flow of arterial blood) requires me to tear off my midriff’s covering, I keep the expanse of white flesh from my neck to my hips under wraps. No bikinis for me, no tiny tees designed to flash a bit of belly, no hip hugging jeans that make the gut area open for perusal. On the other hand, corsets might come into style. Or when I kick my sarcoidosis into permanent remission, perhaps Jay and I might move to Yemen or Saudi Arabia. I think a burkha would suit my current stomach situation.

I envy Andrew’s carefree attitude toward food and his body, and both Jay and I are zealous to keep our food/body neuroses as far from him as we can, so that he can continue to love his belly—and his arms, legs, skin, nose, and every bit of himself. (Really, we do. And really, I am joking about burkhas and corsets. And really, I am actively working on improving my own attitude toward food and my body.) But at school, just as surely as a fish absorbs oxygen through its gills, he’ll imbibe our culture’s dis-ease with the flesh, with the shape we each have. Jay and I comfort ourselves with the fact that our only child is a boy. Although it’s not impossible for a young man to develop an eating disorder, it is much less likely than for a girl (Or so we tell ourselves. Jay just read to me that someone has come out with a version of the male girdle. That can’t be a good sign.) Hopefully, Andrew won’t start on his first diet when he is nine years old, like his mother did. Hopefully, he’ll show a bit more strength in the face of the diet industry (which, according to a University of Colorado study, takes in over $40 billion a year) than I did—loathing my lean athlete’s body because it didn’t match the heroin-chic models staring out of glossy magazines at the supermarket check stands. Hopefully, Andrew will learn from his father and me ways to deal with his feelings that don’t involve stuffing food into his mouth. Although I’ve worked hard to separate the rage I feel about contracting such a debilitating form of sarcoidosis from my underlying impulse to soothe that rage with chocolate chip cookies, it’s an ongoing process. It took me a lifetime to develop the habit of shoving food into my mouth whenever I feel sad, anxious, lonely, or overwhelmed, so I can’t expect to change overnight what my mind perceives to be a tried-and-true coping strategy.

Besides the differences in our tummies’ external appearance and in our perceptions of our stomachs’ loveliness, the other major contrast between Andrew’s tummy and mine is one of function. Like I said earlier, my son likes to announce his trips to the bathroom, and his poopie pronouncements are nearly as regular as the Italian trains were fabled to be under Mussolini. I, on the other hand, have entered gastro-intestinal hell. My digestive trains have been taken over by sociopathic, dyslexic anarchists—not only do they not care if the trains are running on time, these bastards want to see head-on collisions between freight and passenger trains. Since the first of this year, I’ve been hospitalized four times with uncontrollable diarrhea, sometimes with some uncontrollable vomiting thrown into the mix, just for fun. While in the hospital, I have been well cared for (and thankfully rehydrated), and I’ve also had almost every known test run on my stomach, colon, and stool, all of which have turned up nothing unusual except for a fungus growing in my esophagus (apparently not that abnormal after years of immune suppression.)

For me, diarrhea has usually been a laughing matter. Having traveled and lived in undeveloped countries, I’ve had my share of 48-hour unpleasantries in the potty. But like a lot of other folks, I really don’t like to talk about my feces or the organs responsible for producing and regulating the stuff. Faced with a food- or water-borne parasite, I’ve typically sung a few bars of the kids’ tune, “When you’re sliding into first and you feel something burst, DIARRHEA!” However, the past few months have taught me that crapping is no joke, especially when, like me, you are doing so fourteen or fifteen times a day (and that’s with Imodium in my system). Suddenly, I’ve lost my childish squeamishness with all things scatological, and have a visceral (no pun intended) compassion for the thousands of people who die of cholera (which involves shitting oneself to death, literally, because of dehydration brought on by diarrhea caused by contaminated water).

The medical details of my gastro-intestinal problems (and the possible solutions dreamed up by five different doctors) I’ll save for my next post about my recent trip to Cincinnati. In short: all I can say for certain is that I do not have sarcoidosis in my gastro-intestinal tract (good news), but it is not clear what I do have. In the meantime, I have no idea what to eat, or not to eat. The sensible weight loss plan I was following (and which was working, even with me still on prednisone, at the sensible pace of about a pound a week), is impossible to continue, since it involved eating lots of raw and cooked vegetables, legumes, brown rice, and fruit. Lately, I’ve been eating stuff in the banana, white rice, saltine, and toast families of food. (I have lost 10 pounds in the last two weeks and 30 pounds since New Years, and while I’m not sad to shed the extra weight this is absolutely not have I would have chosen to go about doing it, and this is ridiculously unsustainable.) I’m also in a fair amount of pain. I’ve become accustomed to the head pain, and the familiar swirling sensation of the accompanying vertigo. But this gut pain is new. Sometimes, when I’m in the throes of one of my day-long diarrhea fests that land me back in the hospital, no matter how much water and Gatorade I swill to offset the dehydration, I experience an awful cramping and convulsing in my lower abdominal region. Usually, though, I have a constant, stabbing pain in the area around my navel. Eating makes the knife twist and plunge a little deeper. But the shiv is always there.

If you’ve read a few of my blog entries, you’ve probably figured out that I try to learn from my experiences in Chronic Town. As I’ve written many times before, I do not believe that I “earned” my house and lawn in the land of the chronically ill by my past exercise, diet, travel, or emotional habits. I also don’t believe that any Higher Power (good or bad) gives people sicknesses—to test us, to punish us, or to get us ready for an afterlife. However, I do believe that I have much to learn, and at the present time, I have two teachers: sarcoidosis and my son. Sometimes the duo has different lesson plans, and I know for a fact that Andrew detests my disease and its treatments for how they make me sick and inaccessible to him. But becoming diagnosed with a chronic illness at nearly the same time I first became a mother has split me open so that I can see the chasms in my understanding. Without Andrew, would I ever have witnessed the sheer delight a human can take in his own body? Would I ever have learned how sorry and warped my own view of my self was? Perhaps, but without Andrew’s future emotional health partly in my hands, I doubt I would have been so motivated to put in the hard work I now am doing to appreciate the miracle of my own flesh and bones (even with the limitations of disease and weight gain), and without the goal of being alive to watch Andrew reach middle age. I also doubt that I would have put in the equally hard work of learning to care for my body and my feelings. Sarcoidosis—and the medications I take to eradicate it—never stop surprising me with hard lessons about the amazing complexity of the human body, how it takes so many organs working together to allow me to walk on this earth. Sometimes, I suppose, you have lose something to know what you had. It’s a cliché, but one I live every day. With Andrew and with whatever fanged thing that has taken up residence in my guts, I am learning about the miracle of eating and eliminating (although the miracle loses its thrall when the elimination extends beyond two or three episodes a day). I am learning about the joy of a full stomach, the visible sign of a good dinner. I am learning that food isn’t necessarily about potential fatness; it isn’t necessarily about the calories needed for a hike; it isn’t necessarily about the vitamins a healthy body extracts from it. Food simply can be all about a kiss on a warm, rounded tummy.

(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.

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.

I am still alive.

I know I’ve disappeared like a blip into the flashing bytes and bits of cyberspace.  If it is any consolation, I’ve done the same thing in the real world, answering the phone only when I’m not sleeping.  Four or five loyal friends hang onto me and keep calling, keep demanding that I maintain at least a toehold on the firm, sandy earth of the here and now.  Otherwise, I think I might drift away on an ocean of sleep, driven further out to sea by currents of pain and nausea—but mostly by exhaustion.

My world has shrunk.  My life has all the same components it had a couple of months ago—a loving husband, a busy and affectionate son, a house in Montana, an obnoxious tabby cat brought back with us from the tropics, ideas for writing projects flitting across my brain like silent films, two families who provide us with emotional and material support, friends who baby-sit with five minutes warning and come along to medical appointments…and, unfortunately, my sarcoidosis.  The shrinking of my world isn’t due to a loss of these “raw materials.”  Instead, it is as though my life is a ball of bread dough.  Rather than tucking the dough into a warm nook, covering it with a clean towel, and letting it rise, my disease and the treatments I receive to combat it, have led to an ongoing working and reworking of the dough.  I’m not discarding anything, but I, and my drugs, are pressing and shaping that ball of dough into a smaller and denser lump.

Nevertheless, I am still alive.

The shrinking—or the condensing, just to stretch a tired metaphor a little more—stems from the disease and the devilish regimens the specialists have constructed to fight it.  Every other Thursday, I show up at the Cancer Treatment Center for chemotherapy, although I don’t have cancer.  But since my manifestation of sarcoidosis doesn’t respond to a single agent, the doctors have decided to throw every conceivable treatment at the disease (and thus me) all at once.  So, I take prednisone and thalidomide, as well as receive infusions of Remicade and Cytoxan (the chemo).  The data the sarcoidosis gurus use to justify this odd and intense combination of drugs is laughable, if this were a laughing matter.  Six people with my “neuro-refractory” form of sarcoidosis responded well to Cytoxan in one study; eight other people with skin and cardiac presentation went into remission after a course of Thalidomide, so perhaps my cardiac/pulmonary/liver/brain combo will do the likewise.  When you are afflicted with a rare form of a rare disease that has no known cause and no known cure, you lower your standards for proof a little bit.  Since I’d like to avoid a “cardiac event” (polite medical-ese for keeling over with no hope of resuscitation) or a stroke, or another God-awful episode of sarcoidosis-induced meningitis, I endure the pharmacological version of the drinks I used to make in college (a little vodka, a little gin, a little rum, some schnapps, and a dash of Sprite and Kool-Aid to make it go down).  In other words, I show up every other Thursday to have poison dripped into my veins.

Even though the nurses and the oncologist are kind and gentle, even though the Cancer Treatment Center has homey touches meant to conceal—or at least minimize—the intense medical reality of the place, there’s no denying that we who have entered are in the realm of the medical  hard core.  Yes, they have nice quilts and the best sugar cookies, but they also have puke pans and defibrillators alongside.

I am still alive, although there are mornings when I’m not sure.  Who knew the human body could be so tired?  Who knew a gal could puke up most substances known to humankind—like water, Gatorade, saltines, water, more water, and my pills.  Nevertheless, I press on, showing up every other Thursday for chemo; every four weeks for Remicade, and swallowing three handfuls of pills every day.  And, no, I don’t have Munchausen’s syndrome, nor an inner masochist.  I’m enduring all this because something seems to be working. My vertigo is improving.  Most days now, it doesn’t feel as though I’m on the storm-tossed S.S. Minnow (without the courage of the fearless crew); most evenings now, I can close my eyes and not feel the room spinning and whirling like a kaleidoscope.  Most days I can now look at words for a couple of hours, instead of my old twenty minutes, before the whirly birds in my brain start chuckling and twirling.  And, with one major recent exception, I’m not regularly falling over.

So, I am still alive, and I think I might be possibly starting to get better. (But I’m afraid to speak, much less write this last part.  I never used to be terribly superstitious, but then, I never felt like someone was prying open my skull with a pick-axe.  So, please, after reading this semi-positive statement, find some wood-like object and knock on it for me.)  But being alive isn’t all there is to living.  I am so ridiculously tired that sometimes it feels like too much work to pull the sheets up over my semi-slumbering body.  I am not even sure that my son and my husband know who I am anymore.  Andrew probably thinks some odd lady a la Rochester’s first wife (the crazy one in the attic) kidnapped his mother and walks the floors between bed and toilet.  If it weren’t for my most loyal friends calling me, and then re-calling me until I fumble for the phone and croak out the details of my life, I think entire days might pass by when I don’t speak at all.

The worst are the days following chemo.  I feel as though the kindly oncologist has infected me with stomach flu, and then laid me down in the center of the road to let buses and cement mixers run over me.  Jay has done a marvelous job of keeping Andrew out of the house for these days, so that my little guy doesn’t need to witness his Mommy puking and cursing and flopping around like a fish out of water.  The after-effects of the chemo really hit me on Friday night, so on Saturday, I wave goodbye to my boys from under my pillow and know that Jay is teaching and showing Andrew all the things I had planned: they bike, they ski, they watch football (OK, that one I probably would not have prioritized); they go bowling; they shop; they hike; they have dinner with friends; they seem to spend an awful lot of time at the local brewery, Jay swilling stout and Andrew stuffing down popcorn.  I wouldn’t have it any other way, given our current circumstances.  This is not the life I envisioned for myself or my family, but it’s the life I got.  I’d rather Andrew be out in the world then keeping some pseudo-vigil by his nauseous Mom’s bed.

So, although I am still alive, I am lonely.  I spend most of my post-chemo days alone with my ipod and the books Jay’s Dad is nice enough to let me download from his audible.com account.  Sometimes Kate, the erstwhile tropical tabby, cuddles into my flank.  My Mom calls to make sure I’m alive; Jay and Andrew check in by phone; my life-line of closest friends call and then leave me to my sweaty sleep.  Otherwise, the house is silent; I am alone with any dark thoughts that clamor for attention above my books.  I am lonely, but I’m not sure I would change my routine.  It’s not as though I am up for entertaining on these days.  Jay encourages me to have people come visit me when I’m stuck in bed, but I shudder at making acquaintances watching me lurch off to the toilet to puke up a few teaspoons of water.

Although the details aren’t pretty, this is my life.  I have faith—and even some radiographic evidence—that I am improving.  I even take comfort in the bitter winter cold that has subsumed our town.  Like the grass and the small living things hunkered down beneath the frozen tundra, I am alive; I have had to go to a dark, alone place, but plan to emerge soon from the snow and the ice.

This entry was prompted by Nancy’s comments to my last post. She said, “You are the Mom you are meant to be right now. That Mom is sick, fighting a disease, living what she can right now. Be what you can be and let the rest hit the floor and kick it aside.” Thank you, Nancy.

Something remarkable happened to me recently. I was alone. Truly, utterly, and absolutely alone. It was wonderful. It was also a tad terrifying. But by the time my family returned, I had put my aloneness to good use.

Andrew and Jay left on a Saturday after Andrew’s final soccer game of the season. In a whirlwind of last minute packing, of shucking off cleats and shin guards in exchange for traveling clothes, of two cold noses pressing against my face to say goodbye, they were off to the airport. Jay had a work conference near where my brother and his family live. It was an opportunity for Andrew to spend time with his older cousins, as well as a chance for him to get a break from Sarcoidosis-Central. It concerned me that my not quite five-year old had memorized the list of drugs I take, simply by listening to me discuss them with other people. While I’m happy to know that he’s smart enough to retain words like Cytoxan and Remicade and to deploy them casually in his everyday lexicon, I was also appalled at how closely he monitors my health and how deeply invested he is in my medical regimen.

I’ve been grounded (literally), so it was impossible for me to accompany Jay and Andrew. Since I’m taking four immune suppressants, my doctor has warned me not to enter the germ incubators we commonly call airplanes. I had disregarded his warnings right after I started getting chemo every other week, and Jay and I had slipped off to Portland for a long weekend. Our trip was lovely, but I became dreadfully ill a couple of days after we came home. I’m still on antibiotics to fight the infection I picked up 30,000 feet above the earth.

I was also simply too sick to travel, even if I wanted to flout the doctor’s orders again. I had gotten a dose of chemo on Thursday, so by Saturday I was nauseous, exhausted, and felt like a few thugs had taken me into a back alley and kicked the crap out of me. (Who knows? Maybe they’ll recommend that as my next treatment.) I was even feeling too lousy to micromanage Jay and Andrew’s packing operation. This in itself was remarkable. If micromanaging ever becomes an Olympic sport, I’ll take gold. I usually trail after Jay with four different lists of things to pack, poke around to see what he’s put in the suitcase, inquisit at least a dozen times if he really did pack sunscreen and floss and whether he has enough toys to entertain Andrew on the plane. In my quest to be “helpful” and make sure everything is up to snuff, I drive Jay utterly nuts. It was a testament to how horrible I felt that I just stayed in bed, listening to my latest audio book, rather than shuffling around and meddling.

I did rise from my tangled sheets to give goodbye hugs and kisses. I stood dutifully in the window and waved with as much energy as I could muster. And then I cried for half an hour because I desperately wanted to be going on a trip rather than staying home to optimize my body’s absorption of chemicals. Eventually, though, my tears dried, and I was engulfed in the absence of sound. Clichéd as it is, there really is a sound to silence. It is impossible to put this sound—or soundlessness—into words. There is a physicality to silence, as if one’s skin rather than one’s ears detects it. Silence brings an inaudible hum with it, notes that, like whale song, play on a register below consciousness. A few hours after Andrew and Jay left, it began to snow for the first time of the year, and the low-lying clouds, the inches of snow piled on the deck, only deepened the silence. I felt enveloped by it, acutely aware of every noise the appliances made, of the sound of my tread on the floorboards, of the wind against the windowpanes.

If you have never had children, I think it is almost impossible to appreciate the feeling of an empty house, particularly an empty house without the prospect of someone returning soon. Andrew is loud. I can always hear him talking and hopping, calling out to Connie or Andrea or Jay that he is launching his rocket off to Word World, that he has brought home a baby dragon named Madrigal for a sleepover. “Don’t worry,” he’ll say. “Baby dragons haven’t developed their fire breathing yet.” And even when he isn’t home, I know he’ll be back soon. The echoes of his stories linger and wait for his return. With his presence so palpable, the minutes I have to write or to sleep feel stolen. Always in the back of my mind a clock is ticking. Forty minutes until they’re back. Twenty minutes. Ten minutes.

This was different. Jay and Andrew were going to be gone for nearly five days. Five days! I was at once exhilarated and terrified. I had never been apart from my son for this length of time. My mother wanted to come be with me, in case the after-effects of the chemo were worse than expected, or in case I took one of my vertigo-induced tumbles. But a voice inside me, a steady, quiet voice, told me that it was important for me to be alone, without the prospect of a caregiver stopping by, or Jay and Andrew returning from their usual Saturday morning outings to the Farmer’s Market and Costco.

The last time Andrew and Jay left for a few days was for Jay’s father’s wedding, and I used that quiet to blast through a book proposal for a memoir based on my experiences of getting a kid and sarcoidosis at nearly the same time. Part of me wanted to do something similar during this period of solitude. An agent had nibbled at my proposal, and wants me to send actual chapters. “Great!” said the hard-driving inner voice that forgets how incredibly ill I can feel, “I’ll spend five days writing and writing.” Luckily, another–saner–part of me realized that writing twenty minutes at a time is about all I can handle, and that even so small a goal would be impossible after chemo, when rolling over in bed feels like sprinting up a hill.

What I needed for these five days wasn’t the chance to produce something. Rather, it was time to think—about the inner guilt that was destroying my psyche as surely as if I were whipping my soul with a studded belt, about the pieces of me that refuse to admit that my life has changed irrevocably since my diagnosis four years ago, about the feeling that everything and anything I do is wrong.

When I could lift my head without feeling like barfing, I picked up an old journal and began to think about what my priorities are, right now. Sure, it would be nice to hammer out some chapters and possibly hook an agent; it would be nice to clean out the closets overflowing with shoes and clothes Andrew has outgrown; it would be nice to devise a workout schedule and stick to it, no matter how vile I feel; it would be nice to plan and prepare fascinating learning activities for Andrew and I to complete together; it would be nice to cook multi-course dinners from organic meat and produce; it would be nice to find a Japanese tutor for Andrew and a banjo teacher (the language he wants to learn, and the instrument he wants to play). All of these are noble goals. But are they priorities right now when I’m besieging my body with chemo and a host of other medications, when I have an extremely limited amount of energy to devote to a multitude of interests and responsibilities? No.

Scribbling in my old journal let my thoughts take shape. I realized that my priorities were fine: getting chemo and thalidomide to kick my sarcoidosis into remission; being the best mother I could be given some very limiting circumstances; writing; continuing to find a spiritual pathway to help me find meaning in my strange new life; making time and space in my life for friendships to become deeper; and focusing on my relationship with Jay. The qualities of my life I wanted to develop—as wife, mother, writer, friend, and spiritual seeker—were noble and good, but only if I could reframe how I viewed them and only if I could use my energy to work towards achieving these goals with my current limitations instead of stockpiling metaphorical missiles to fire at myself when I fall short of whatever arbitrary standard I set within me.

Reframing my goals means putting down the cudgel I use against myself whenever the house fills with clutter, whenever I sleep fourteen hours at a stretch, whenever I can’t summon the energy to write, whenever the dinner menu consists of various frozen foods, whenever I look at my thighs or my prednisone-puffed face and can’t recognize myself, whenever I tell Andrew I can’t read to him tonight, and on and on. This will be no small task for I have for better than three decades assessed myself based on what I have achieved, rather than who I am. It will mean believing that the people in my life who matter—Jay, Andrew, my brothers and sister, my parents, Jay’s parents, my good friends—love me not because I can whip up a four-course Thai meal or plan an exciting science activity for my son. Reframing means letting go, of truly believing that Andrew loves me unconditionally and that as he grows older, he’ll come to understand that I tried my best to be a good mother to him.

Mostly, though, reframing entails existing as I am in this moment and not fighting against the path I am now following. Living as best I can, trusting in my love and the love of family and friends, is proving more difficult than chemo, than my vertigo, than my headache, than my sarcoidosis. It means letting go of the past, as well as leaving the future for its own time.

I used my five days of silence to explore these ideas. Even when I wanted to stop thinking about the choices I do have—to live as fully and as wholly in each individual moment as I can—my mind returned to this idea again and again, much like your tongue seeking out the hole left by an extracted tooth. I am not always successful in reframing my view of myself and my place in the world. But I do find myself simply snuggling with Andrew in bed on post-chemo days, marveling at his liquid eyes, his golden hair, the care he gives to me, and worrying less about whether I am a good-enough mother.

Hi all–

This is Jay.  Rebecca asked me to post something quickly because she knows it’s been a while since she put anything up and she didn’t want people to worry.  The chemo has been absolutely kicking her butt, but we continue to hold out hope that it’s going to do what it’s supposed to do and send her into remission (all good wishes, prayers, etc. to that effect are more than welcome).  She also wanted me to say that she has been working on putting some posts together in her head for a time when she is able to sit at the computer without wanting/needing to vomit.  So please bear with her and keep checking in.  Thanks.

The vice presidential debate tonight promises to be a blockbuster.  For a position that Founding Father John Adams called “the most insignificant office that ever the invention of man contrived or his imagination conceived,” folks certainly are in a tizzy about the vice presidency this election.  Even as the American economy threatens to tank and President Bush pushes Congress to pass legislation that would effectively nationalize the banking sector, much of the political chatter has to do not with matters economic but with Palin-tology.  Ever since John McCain chose Alaska governor Sarah Palin as his running mate, both sides of the political spectrum have become obsessed with the politics and personality of Palin.   Whether you love her or loathe her, Palin has become a cultural flashpoint—a sort of screen against which people can project their own experiences and anxieties.

Much of Palin’s appeal, to those who find her appealing, is her “every day-ness.”  A self-described “hockey Mom,” this mother of five has won the devotion of working women, particularly those of a conservative bent.  “She’s just like me,” a caller said on NPR’s Talk of the Nation.  To this woman, Palin was a far-North neighbor next door, just another working Mom, balancing the demands of children and career.  Of course Palin is the chief executive of the state with the largest gas and oil reserves, and her five children include a pregnant teen and an infant with Down’s syndrome.  She’s run marathons and can kill and field-dress a moose, yet also holds staff meetings while nursing and rocking her five-month old.  And to top it off, Palin, in her stilettos, fitted suits, trademark “up do” and trendy glasses, is gorgeous but in a wholly unpretentious way.  No Nancy Reagan-esque china doll designer duds for this rifle toting, all-American gal.  “She’s proof that women can have it all,” the pro-Palin Talk of the Nation caller concluded.

It makes me want to puke.  (Though so many things do these chemo days.)  Not because I think women shouldn’t try to have it all, not because I believe a woman with children shouldn’t have the second-highest (or the highest) office in the land.  Not because Palin is a proven liar who keeps repeating the same tired untruths at every campaign stop. No.  My reaction was less philosophical than it was purely petty.  She makes me jealous.  She makes me feel insecure.  She reminds me of the kind of mother I wanted to be and planned to be (albeit without the dead moose and the Pentecostal religious fervor.)

After all, I am a daughter of the feminist movement.  I came of age when women donned their power suits with padded shoulders, dropped the kiddos off at daycare, and left for the office.  When I became pregnant with Andrew, my one (and probably only) child, I didn’t spend much time thinking about a work-family balance.  I just assumed that I would work and that I would raise a splendid son.  Of course, I would also have a clean house, a toned body, and a well-read mind to go along with my work and my kid.  In my infrequent imaginings about real life with a child, I added a soundtrack, always classical music, tinkling in the background of my well-organized life.  I expected that we would travel and have dinner parties, and, when the time was right, Jay and I would have a second child—probably a girl to complement the splendid son.  We would go on family bike trips and back-packing trips.   I pictured us pedaling through Italy, Jay and I each toting a youngster on a tag-along bike.  Of course I would “have it all,” just like the NPR caller and just like Sarah Palin.

There were hints that my expectations were totally out of whack.  I mean, I didn’t live entirely in my overly-vivid imagination.  I had read articles about working women putting in forty hours at the office and then coming home to clean the toilets and make dinner.  In many American households, women did indeed get it all—all the housework, all the laundry, all the kid-related chores, on top of full-time work.  Moreover, I had witnessed family members opting to quit working because the cost of quality childcare almost exceeded their take-home pay.  Still, I’m never one to let a few facts fly in the face of my fantasies.

As I’ve written before, I never got a chance to test my blurry ideas of motherhood.   Andrew was only three months old when I was diagnosed with sarcoidosis, and my health has steadily declined since then.  I’ve never had the opportunity to balance work and family, because– with the exception of a couple of small writing projects–I haven’t been able to work.  My sole balancing act has been a literal one.  Ever since the disease entered my nervous system, I’ve struggled to stay upright during spells of intense vertigo.  Not working doesn’t upset me too much.  I do hate feeling financially dependent on Jay, as well as on a coalition of family members on both sides whose monthly contributions have made it possible for us to afford childcare.  For the most part, though, I haven’t defined myself through my jobs.

What really eats away at me is my diminished capacity as a mother.  I’ve given up on my visions of Italian cycling trips and a clean house, and I’m mostly sanguine with the absence of classical music on our CD player. (Andrew’s current favorite musician is, God help me, Elvis Presley).  My torment has been that my disease has eroded my chance to be a mother.  As my sarcoidosis has moved from organ to organ, I’ve needed more and more “help” with Drew.  When he was a toddler, I could manage with a few hours of babysitting from a college student.  Now, I truly can’t care for him on my own.  We’re lucky to have two of the finest women in town to help.  But it grates on me that I can’t drive, that I need to spend so much time in bed, that I can hear other people teaching my son to read while I have to bury my head underneath a pillow to fend off an incoming headache that feels like a warhead crashing into my skull.  Now that I’ve started getting chemo every other week, I have even less stamina and less energy.  On my “chemo weekends,” I sleep for fifteen hours and still feel exhausted.  I emerge from my haze of nausea and fatigue to wave at Andrew and Jay as they head off for a bike ride or a hike, or on their way to a birthday party, the Farmer’s Market, or the library.

I’ve been crying a lot about this lately.  Sometimes I’ll catch a glimpse of Andrew’s profile, and he looks so grown up that my gut clenches.  He’ll be five on New Year’s Eve, and then he’ll be starting school and moving farther and farther away from me.  I have missed so much of his life.  I started bawling about this to a friend today, and tried to explain my all-consuming disappointment and guilt that I’ve been a shadow mother for much of Andrew’s existence.  She said, quite reasonably, that it was really no different than if I were a “working” mother who dropped him off at daycare or preschool.  In fact, she pointed out, I’m probably more present in his life than I would be if I was at a job full-time.  Even though I have to spend inordinate amounts of time in bed, I am, after all, home with him.  I can hear him, and he can chat with me when I emerge from my room.  My friend is right.  But she missed the key to my grief: I have had no choice in this matter.  Unlike Sarah Palin, I haven’t been able to decide whether or not to work, whether or not to seek help raising my son.  My disease has done all the deciding for me.

But self-pity parties only go so far.  What mother has been able to enact her pre-child imaginings once she’s brought her squawking newborn home?  Yes, a small (and lucky) minority of women in America do have the luxury of agonizing over whether or not to work, of how much time with their children is enough.  But most women have to work to ensure that the power stays on, that the rent is paid, that there is food on the table.  And for these women, childcare isn’t the one-on-one situation that my immune-compromised state has necessitated (and that Jay’s and my families have enabled); it is whatever facility is cheapest or closest to home.  It’s true that I have relinquished much control to my sarcoidosis, but I have plenty of friends who have lost just as much control.  One woman’s husband walked out, leaving her to face a pile of bills she hadn’t accrued; another woman’s husband lost his job; yet another fine woman’s employer decided to stop covering health insurance.

I can’t unwind the twin threads of motherhood and illness that define much of who I now am.  I never really got a chance to be Andrew’s mom before I got really sick.  But I have an inkling that even without illness, being a mother means relinquishing control.  Having a child necessitates letting go of those silly ideals we thought we would live when our babies were just bumps in our bellies.  Italy?  Clean house?  Dinner parties?  Even without sarcoidosis, I was just short of pure delusion in my pregnant imaginings.  I’m trying to remember this when I want to weep about life gone awry or when I want to mentally flagellate myself with guilt over all that is not how I supposed it would be.

As to Sarah Palin and her cohort of fans who “have it all,” I’ll admit that I’m jealous.  Hats off to any woman (or man) who can raise five kids and run a state.  I wish I could.  But I can’t.  So, during this season of elections and debates and choices, I’m going to try to choose to spend less time brooding about what hasn’t turned out the way I dreamed and more time appreciating all that I do have to worry about.  It sounds terribly trite, but it’s the hardest task I’ve ever set out for myself.  Maybe it’s even as challenging as skinning a moose.

I know I’ve been absent lately. I have missed writing and posting my thoughts about the happenings in Chronic Town. I have scribbled down skeletons for a dozen different essays, but the bodies have remained stubbornly in my head. I haven’t had the concentration or the will to move from a scrawled idea to a coherent piece of writing.

I feel ill—both physically and psychically. I knew chemotherapy would be hard, but I underestimated how much the treatments would sap of the very little energy I had to begin with. Ever since I got sarcoidosis—and especially since the disease moved into my brain and wreaked havoc on my internal wiring—I’ve been extraordinarily tired. I’m sure every other citizen of Chronic Town can relate to the persistent, tugging, bone-aching fatigue I’m talking about. But before I started chemo, I could usually exhort myself with my inner drill sergeant to get up and at ‘em. “Get your laaaazy ass out of bed, Private Rebecca, and get to work/make dinner/play with your son, etc.” Now, though, my commanding officer has gone on vacation, or maybe she got sent to do a fifth tour in Iraq. No matter how loudly I yell and curse at myself, I can’t seem to muster enough energy to doanything.

I mean it when I say anything. Returning phone calls (from bed) feels like a huge amount of work; same with showering. I have an agent interested in seeing a couple of as-yet unwritten chapters, and I can’t summon up enough energy to even care that I’m probably blowing an opportunity I won’t likely get again. I should e-mail him and explain that I’ve started a rigorous protocol involving many different drugs. But even checking my e-mail feels like a chore. The thought of writing anyone back makes me tired. Simply spending time with my son exhausts me. I have rehab exercises to do for my messed up ankle, but I can’t summon up concern for its future stability.

I have launched a war against my disease. The only hitch is that the disease is in my body, so all the ammunition hits me—all of me. I have so many immunosuppressants coursing through me, I think you could draw some of my blood and set it on fire. I feel that combustible—and that toxic. There’s the Cytoxan (chemo), the Remicade, the prednisone, and the Thalidomide, as well as all the other crap I need to take so that I can keep taking the main agents: a daily antibiotic to prevent pneumonia; medication to help with nausea after chemo; an anti-viral pill; a drug that’s supposed to help with the vertigo and headaches brought on by the sarcoidosis in my brain; and so on.

I know that some of my readers think I’m crazy, that I should abandon the pills and infusions that the White Coats have recommended and try the Marshall Protocol (an alternate theory of both the cause and the treatment of sarcoidosis) or some other less brutal regimen. Maybe these people are right. All I know is that I have one son who is growing up faster than I can imagine, and I want to be present in his life—not stuck in bed because I’m dizzy and the room seems like it is spinning and my head feels like it’s going to explode. I left my meeting with Dr. Wizard in Cincinnati with a particle of hope that I could fight this disease and kick its nasty, granulomatous ass out of my body. It was the first time in a long time that I had felt hope, so I cling ferociously to that particle.

I have five more months of chemo before we can even assess its efficacy. I’ve only been on the Thalidomide for a month. In other words, this war will continue. To survive it, I need to lower my expectations of myself. Otherwise, I’ll make myself nuts. I’m trying to think small when it comes to daily goals. Showering, returning a couple of calls, doing my rehab, showing up to my various medical appointments, helping Jay with the dishes, putting Andrew to bed—those are accomplishments now, given how I feel, not something to sneer at and deride myself for.

The other night, I started bawling in bed. “I can’t do this for five more months,” I sobbed to Jay. “It’s too hard to make myself so sick so that maybe I’ll get well.” My husband gave me some of the wisest advice I’ve ever heard. “You don’t have to do this for five months. You just have to do this today.” Amen to that. Bring on the tanks.

I know it seems like I’ve vanished into the ether. I haven’t. Quite the opposite, I’ve been wallowing in physicality. I’ve been preoccupied and occupied with my flesh and its (mal)functions.

As I wrote a while ago, I’ve started a new medical regimen recommended by a new doctor I saw at the University of Cincinnati. Ever since my sarcoidosis entered my nervous system last November, I’ve suffered from debilitating headaches and vertigo. I have committed to what I can only describe as a rigorous new protocol that involves twice-monthly chemotherapy (Cytoxan is the name of the juice I get), daily doses of thalidomide, continued monthly infusions of Remicade (the anti-TNF drug that is supposed to help with the inflammatory process related to sarcoidosis), and, just for the hell of it, I guess, my steady daily dose of prednisone (although the Cincinnati doc swore I could begin tapering off the prednisone as soon as my neurological symptoms improved.)

Like I said, none of this has proved to be ethereal. Chemo has made be acutely aware of my stomach, as well as my guts and bones. Susan Sontag wrote brilliantly in her essay, Illness as a Metaphor about the metaphors and myths that surround cancer and its treatment. She examined the rhetoric that imbues cancer (and later HIV/AIDS). Using a historical lens, she compared the images of nineteenth century tuberculosis patients with the modern patient and found that many of the cultural tropes remained the same: the wasted person melting away, poetically, of course.

I’ve written before that we—as patients and as a society—need to divorce sickness from the freight cars of baggage we carry with it. As I’m sure anyone who has had any medical condition that lingers for more than five minutes will attest, you get slammed in the head with this baggage when you have a chronic disease. An army of do-gooders crawls out of the woodwork to tell you to let go of your anger, that old pain makes you sick, that modern medicine will kill you, and on and on and on. It’s the same old tune that Sontag wrote about.

I hadn’t realized that I, too, was holding onto some of these misconceptions until I began chemo. I thought that I would feel a little upset in the tummy. I’m not too proud to admit that I even hoped that I might lose a couple of the many extra pounds I’ve gained during my four years on prednisone. True, there was a twenty percent chance I’d lose my hair. But I held in my mind a highly stylized vision of chemotherapy. I, too, would shed my excesses—fat, hair, disease—and emerge healed and cleansed.

Hah. Chemo doesn’t just make you nauseous. It makes your stomach feel like it has staged a rebellion against the rest of your organs. “We’re seceding!” scream my guts, “And we’re taking that large intestine with us!” Imagine me, a staunch Democrat, having to hear the rhetoric of states’ rights coming from my innards. The new generation of anti-nausea drugs like Zofran does a lot to calm down the revolution within. Unfortunately, they make my headache worse. When I’m dry-heaving bile, I opt for the headache, but still, it’s a crappy choice. Chemo also makes the rest of me hurt. I feel like I’ve got the flu. My bones ache; getting up to drink a glass of water seems like a journey to the South Pole. I’m so tired that sometimes even listening to a book on tape is too much effort. Instead of transcending my body, I am more deeply trapped in it. And this confinement doesn’t just last for the day or two after each treatment. It takes about a full week for me to return to “normal”—you know, back to the crushing headaches and the feeling that I’m living aboard a ship. So, now I view my life as one week “on” and one week “off.”

I’m giving the chemo six months. I even got a port installed in my chest, so that instead of having to start an IV on the veins in my hands the prednisone has turned into mush every time I go for treatment, the nurses can now just insert a needle into my pectorals. I push away the image of Uma Thurman in Pulp Fiction getting jabbed in the heart with a giant hypodermic filled with adrenaline. But the scene sticks (no pun intended), and every time I turn my head, I can feel that port lurking beneath my skin, keeping my mind attuned to my flesh.

Every evening, I get another dose of physicality when I take my thalidomide. Yes, it is indeed that thalidomide—the drug designed in the 1960s to stave on morning sickness in pregnant women that ended up causing thousands of babies to be born with serious birth defects. These “flipper babies” went on to live normal lives—or as normal a life as you can without arms or legs, and after a while doctors figured out that the drug worked well to treat certain types of cancer and auto-immune diseases. Of course, getting pregnant while taking thalidomide would be an exceptionally bad idea, and its manufacturer Celgene Corporation, does everything short of sterilizing me to insure I don’t get knocked up. I had to read a letter from an association of thalidomiders (what the adults who were born with the defects call themselves) in Canada. I had to sign and swear that every time I have sex, I’ll use two kinds of birth control (even though the sarcoidosis has shut down my pituitary gland and thus my ovaries), and every time I take a pill, I need to open a packet that contains a picture of a thalidomide baby and another version of the warning. Then, I have to push out each pill through a picture of a pregnant woman with a line through her; each pill is embossed with the same image. And every month, in addition to having my insurance company pay the Celgene Corporation $6,000 (I repeat, $6,000), I have to call the company and promise (again) that I’m having doubly safe sex.

It can be overwhelming—all this attention I pay to my reproductive system, my rebellious guts, my aching bones, and my throbbing head. But sickness isn’t sexy. So why should I have assumed that getting un-sick would be any less physical? I do try to engage my brain and my soul in the process of healing. As the Cytoxan drips into me, and as I swallow each thalidomide pill, I envision myself well. I imagine a day when my body won’t swallow up the rest of me, when I can spend a few hours lost in a book or a piece of music, not in my flesh.