Isn’t That Liver-ly

October 28, 2006 at 10:38 am (Uncategorized)

I feel silly reporting on the slab of flesh residing in the upper right quadrant of my abdomen. But spending a few months in chronic town does strange things to a gal’s brain. I used to actually devote mental energy to the fact that my eyelashes – though quite long– didn’t curl naturally. Seriously. Then I had a kid and got a chronic disease and my eyelashes resumed their rightful lowly place in the pantheon of concerns. Now I have my lungs and heart to worry about. But luckily, not my liver.

Last week I underwent a battery of imaging tests because routine blood work revealed abnormalities in the way my liver was functioning. Ever since I was diagnosed with sarcoidosis, my liver tests have been a little off. Because sarcoidosis frequently affects the liver – but very rarely does any type of significant damage to that organ – my doctors were usually nonchalant about mildly abnormal blood work. But over the past six months, the tests had gotten more abnormal, even though the sarcoidosis in my heart and lungs is improving.

Rather than just run the tests and then report on the results when they actually had data, though, my doctors did what doctors do best – spread doom and gloom. “Well, we just need to check for things like malignancies, biliary cirrhosis [another auto-immune disease], and hepatitis,” my primary care doctor told me. There’s nothing like that trinity of cheeriness to help me sleep at night. “Malignancies, biliary cirrhosis, and hepatitis, oh my!” went my busy brain in the wee hours of the night. “Malignancies, biliary cirrhosis, and hepatitis, oh my!”

Fortunately, I finally got the results from the tests, and they were all normal. Hooray! I won’t die a quick and painful death from liver cancer. Or a slow and painful death from cirrhosis. My liver is lovely.

Of course, all those shockingly normal results raise the question of why my liver function markers are getting weirder. “It must be the sarcoidosis,” said my primary care doctor here in Helena. “It must be the sarcoidosis,” said the sarcoidosis specialist in Philadelphia. This raises the question of why the sarcoidosis would be more active in my liver if the prednisone is beating it into submission in my heart and lungs. “Good question,” the doctors said, and left it at that. Does this mean the disease is now launching a new offensive on the incrementally lower dose of prednisone I’ve been taking for the past month? “Good question.” But they were both adamant that I do not need to take more prednisone. I got their blessing to continue with the taper and then get reassessed in March. If the sarcoidosis is staging a resurgence, we’ll find out then.

Now that I know my liver isn’t riddled with malignant tumors, I am doing my best to once more forget its existence. Let it manufacture its bile in peace. I have more important things to think about. Though I’ve gotten over my eyelash fixation, I have noticed that my left eyebrow is ever so slightly higher than its counterpart.

You do know I’m kidding, right?

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October 26, 2006 at 2:44 pm (Uncategorized)

Andrew has learned defensive strategies for two sports. His “basketball defense” involves sidestepping quickly across the room in a fairly impressive show of fancy footwork. His “football defense,” though, is even more realistic. Thanks to careful tutoring from his father, my two-year old son now drops into a three-point stance, lowers his head, and charges, as he bellows “TACKLE!” at the top of his lungs.

Andrew may be small, but he is dense. He has flattened our daintier guests, and taken down both Jay and me when he catches us unaware. While Andrew’s mastery of the technical aspects of tackling is pretty cool, having forty pounds of boy intersecting with your vital organs can be bracing. So we’ve been chatting with him about the appropriate times to unleash “football defense.” Charging dinner guests is not OK, we’ve said. We can only tackle each other when we’re roughhousing in the playroom. Defense isn’t defense unless it takes place in the ritual formalities of a game. Taken on its own, the defensive tackle becomes an act of offensive thuggery.

I should follow the advice I dispense so sagely to my son.

The other night, as Andrew’s Mommy-and-Me gymnastics class was winding down, I did my own interpretation of Andrew’s “football defense.” While we were waiting for our kids to get their hands stamped with a Halloween design, the mothers watched older kids doing the splits. “Wow. Could you imagine being able to do that?” one woman, who is a friend of mine, idly wondered aloud. I happen to be pretty flexible, so I said, “I can do the splits.” “Really?” my friend said, in a completely unobtrusive, unremarkable way. Which I completely misheard. “Contrary to present appearances,” I said in a nasty, sarcastic tone, “I used to be fairly athletic.” Thank God I stopped myself from dropping into the splits right then and there. I probably would have ripped open my wool dress pants and then had to skulk to the car with my skivvies showing. Nevertheless, I still managed to suck most of the oxygen out of the room.

Why would I assume that a friend would imply that there was no way I was capable of executing a moderate test of flexibility? Why would I internally transform the innocuous conversation mover of “really”– another way of saying, “tell me more” or “uh-huh”– into an act of verbal aggression? In other words, why did I crouch down and barrel ahead with my head down?

Defensiveness – manifested as touchiness – is a side effect of chronic illness. I’m not alone in this. I know several folks with fibromyalgia (a debilitating disease that defies diagnosis or easy categorization as well as treatment) who have had their complaints ignored by too many doctors and their suffering disregarded by too many friends. When the topic of their illness comes up, they tend toward aggression because they assume everyone will minimize their difficulties.

I suppose I should feel lucky that I have an illness like sarcoidosis that can be biopsied in a laboratory, tracked in scans, and studied in clinical settings. I should also feel fortunate that my sarcoidosis was detected early. I have met plenty of people who had sarcoidosis for years before it was diagnosed. They were sent home from doctors’ appointments with referrals to see psychologists rather than with orders for tests that would have caught the disease rampaging through their lungs, livers, and brains. As a result, some of these people wear their diagnosis and the severity of the disease like a badge of honor. “See. I’m really so sick that I need supplemental oxygen all the time,” they seem to say, as they recount the illness’ path.

I’m also lucky that my family and friends have supported me as thoroughly as they have. I’ve read too many posts on the various sarcoidosis list-serves from people whose husbands have told them to stop whining, whose mothers have doubted they felt that bad, and whose friends have whispered not so quietly behind hands that really, it is time to feel better.

No, my defensiveness is different. I’m not concerned about people taking my sickness seriously enough – probably because everyone has always taken it too seriously for my liking. I feel prickly about losing who I was before the sarcoidosis. Many people in my life –my fellow Mommies at gymnastics, included – have only known me post-sarcoidosis and post-prednisone therapy: bloated, fat, perpetually tired, constantly sick. All it takes is one off-hand “really?” to make my throat constrict, to make me feel as though I am shackled to my illness, as if the “real me” is lost forever in the folds of flesh and fatigue that limit me.

I think the underlying cause of defensiveness in the chronically ill – whether it’s about actually being sick or about being able to do the splits – is really about worth. Sickness makes you question your place in your family, your place at work, your place in your community, your place with yourself. Are you still a mother if you’re too exhausted to cook dinner? Are you still employed if you miss weeks of work for treatment? Do you still have value even though you’re tired, sick, miserable, and feel like you can’t go one more step? What are you worth, now that your lungs don’t function properly, or your heart beats erratically, or your nerves are dead?

My sense of worth has always been external. I derive a large piece of my identity from what I do and what I produce. I think most of us do. For me, being a writer has meant writing – finishing articles or books, teaching classes, publishing. The activities I most enjoyed like hiking or cycling could also be externally measured. I could think of myself as an athletic person because I hiked twenty miles or kayaked for a hundred. Even the more nuanced aspects of my character had external validation. I thought of myself as an explorer and a traveler – mainly because I lived abroad and also because I traveled voraciously to remote locations. Illness took away many of my markers of success. I had to give up exciting writing projects; I gained a lot of weight and couldn’t hike twenty miles; my health demanded I stay close to a major medical center and not go traipsing around Burma anymore.

I am in the throes of reworking my identity, of finding an internal compass. I am writer who doesn’t necessarily have the capacity to write every day. I have an athlete’s heart and drive, but I turn that intensity to fighting my disease. I am an explorer, but, right now, I discover the hidden in the everyday. The only problem is that sometimes, I rear into the old self-definitions, and the question of something as trivial as my flexibility causes me to spiral into a cycle of questioning and self-doubt.

I recently had to see a podiatrist about a stress fracture in my foot. As I usually do when I see doctors, I rambled on about how much prednisone weight I’ve recently gained. It’s almost as if I am telling them, “Look, I’m not this overweight, sick person. I’m really someone else underneath it all.” He listened quietly, and then said, “Well, there’s really not much you can do about that. You’ve had some bad luck.” And something infinitesimal shifted inside me. There’s not really much I can do. This is who I am. If the world doesn’t like me and doesn’t see my capabilities, what can I do? But I need to see myself and remember how strong I really am.

Or else I could just tackle people.

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Cutting Out

October 23, 2006 at 11:24 am (Uncategorized)

Trying to capture life in chronic town – my conception of daily life with a chronic illness —can get to be a drag, particularly on those days when I don’t want to think about sickness. Hence my recent silence.

I’ve always maintained that one of the best strategies for managing a chronic illness is to live in denial of it. Sometimes this works well; other times, it leads to things like broken feet. As Paul pointed out in a comment to my last entry, “forgetting” about having a chronic illness and prednisone-thinned bones and hiking for several miles up a mountain can do wonders for one’s mental state, but may have a less positive outcome for the small (and apparently fragile) bones on the bottom of the foot.

Even though the podiatrist made me promise I would forgo stomping around on my foot for a while, and even though I have spent much of the past couple of weeks having various body parts scanned to explain anomalous liver tests, I was still able to forget about being sick and broken this weekend. My secret for illness amnesia is a three-foot tall, golden-haired boy with a penchant for utter busy-ness. My son Andrew, who will turn three on New Year’s Eve, has no interest in illness (unless the snot pouring out of his own nose prevents him from scampering around the park). I owe him my sanity.

To be truthful, I don’t think I would be able to cope with having chronic multi-systemic sarcoidosis if I didn’t have Andrew. I wonder how people without children or with grown children deal with the psychological effects of the disease. I’ve come to realize that without Andrew’s demands, I would spend much more of my life brooding about being sick. Ironically, it is in taking so much from me – both physically and psychologically – that he gives me the opportunity to be more fully alive.

Take this weekend. I am waiting on the results two different sets of liver tests and a mammogram. But it wasn’t until I had a spare moment to myself this morning that I even remembered that I had to follow up with my doctor or that the results were overdue. This is because Andrew kept me occupied with much more important things. We had to have a tea party with “real blueberry tea” (blue food coloring in water). Of course, he insisted on being in charge of pouring the water into the china tea cups. This involved flooding the table and the floor with vivid blue water at least ten times before I convinced him to turn his attention to the tea snacks I brought downstairs. We also had to read the latest Mister Putter and Tabby books we checked out from the library about seventeen times in a row. We had to build enormous construction sites with his impressive toy truck collection. We also had to make Andrew’s signature multi-media collages, which involve gluing string and shapes cut out of felt to paper, and then drenching the paper with insane quantities of glitter glue, paint, and water. We put in several hours of work on the ten dollar Thomas the Tank Engine sticker book. (Pricey, but it does contain over 700 Thomas and friends stickers!)

And then we had to make cookies. Halloween is fast approaching. My Mom has already made the costume of his choice, sewing him a bunny suit (complete with giant floppy ears, broomstick whiskers, and a cotton tail) out of the densest fur imaginable. We’ve read Halloween books, decorated the house, and gone over the intricacies of the trick or treating. All we had remaining was carving the jack-o-lanterns and making cut-out cookies. After Andrew pestered me for a few days, I finally relented and broke out the cookie cutters shaped like pumpkins, witches, bats, and black cats. We made a buttery dough, and Andrew rolled it out using his very own rolling pin from a special Auntie. We managed to make a few cookies, in between throwing flour on every surface in my kitchen and Andrew stuffing epic quantities of dough in his mouth. Then it was time to decorate. We made orange and black frosting, which Andrew spread on every exposed object, especially his face and arms, before turning to the much more important work of applying the sprinkles. The sprinkles adhered the frosting so well that I had to throw him in the tub as soon as we were done. All told, we produced about eight cookies, all of which Andrew agitated to eat immediately. It took me about an hour to clean the kitchen, another hour to bathe and dress my boy, and an entire day to allow the sugar coursing through his veins to metablozie and cease agitating him to almost electron-smashing velocity. And it was fun. Much more fun than lying around brooding about my ridiculous liver (that some of you seem to doubt actually exists anyway).

I know that Andrew is becoming aware that I don’t feel well sometimes. I think he is beginning to sense that his mother spends more time at doctors’ appointments than is normal. He has already learned to be solicitous of my injuries and illness. This weekend, for instance, he asked me over and over how my foot was. Jay and I have made a pact not to discuss my illness or my constant medical appointments around him, unless we are explaining in a factual way that Mommy needs to be gone for a couple of hours to see a doctor.

Perhaps it is wrong to depend on my son to be the antidote to the toxic brew of illness and treatment I consume. I know I can’t count on Andrew exhausting me as much as he does now. I know he won’t need me as much as he does now for much longer. All too soon, he will spend his weekends on the soccer field or with friends or sulking in his room behind bad science fiction novels. I know this. Which only makes the cookies we make together now all the sweeter.

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October 19, 2006 at 11:50 am (Uncategorized)

I have another injury/ailment to report. I’m sure by now you’re wondering whether I’m either a pathological liar or if I self-inflict these things. There are days when I’m not so sure myself.

At least this time, it’s a very minor problem. I broke my foot, but not in a smashing-the-bone-hobbling-around-in-a cast kind of way. Instead, I have a stress fracture on a small bone underneath my big toe that the emergency doctor described as “not essential for foot function.” So he didn’t cast it, and referred me to a podiatrist who will either make some type of orthotic device or put me in an immobilizing boot.

What really stinks is that this new injury occurred when Jay and Andrew and I had finally all managed to be relatively healthy on the same weekend day. We had blasted ourselves out of the house and hiked up Mount Ascension – one of the mountains that surround our little city. I am grievously out of shape, but since Jay had to carry our forty pound boy on his back, we were almost evenly-matched. It was thrilling to be outside. The sky was a surreal shade of blue, the air was crisp, and once I got over my initial desire to fall over on the steepest part of the climb, I reveled in still having the capacity to propel myself into a calmer and more beautiful place. Andrew played in a patch of snow mid-way up, and we startled a herd of deer in an upper meadow.

“We need to do this more often,” Jay said, as we descended back home in pre-twilight. Andrew seemed to concur. “I like hiking,” he said later that evening, though this could simply be because we shamelessly bribed him to not fuss or fidget by promising him a large Dairy Queen ice cream cone as soon as we were done. We also distracted him by singing several verses of “Old MacDonald Had a Farm” on the steepest part of the climb – which killed a few of our brain cells with oxygen deprivation, but gave Andrew an opportunity to showcase his version of the tune. In Andrew’s iteration of “Old MacDonald,” the farmer didn’t have pigs, cows, or sheep, but rather “giant red tractors,” “huge excavators,” and many pick-up trucks, all of which said, “VROOOM.”

There is no quicker way to doom an activity than to remark on how much you’ve missed it and how much more of it you are planning on doing. Jay and I decided to head for the hills the next afternoon, even though my foot was aching. The ache turned into a throb, which kept me up all night. Instead of hiking the next day, I limped into the doctor, who ordered me off the foot. And that was that.

Stress fractures like this one are fairly common in people who take high doses of corticosteroids for a while, or so said the doctor. I’m beginning to find these reassurances more troubling than calming. I know it’s normal to have a disease that makes me feel like shit, gives me trouble breathing, and causes my heart to flutter; I also know it’s normal to take a medicine that makes me fat, thins my bones, gives me a hump, and makes me moody. Knowing that it’s normal to have thinned my bones to the point that they break when I walk on them for a couple of miles doesn’t make me any less angry or feel any less helpless. Instead, it seems as though my body has been burdened with so many challenges and ailments that it is literally cracking under the pressure. Or as W. B. Yeats said much more eloquently in “The Second Coming,” “Things fall apart; the centre cannot hold.”

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Cold War

October 16, 2006 at 11:34 am (Uncategorized)

Last week, my husband Jay went out of town. This work trip coincided almost exactly with the first cold snap of the winter. Temperatures dropped down into the thirties at night, and Andrew and I awoke each morning to find a crust of frost on the car windows.

I hate it when Jay is gone. He is my best friend and the person I most like to spend my time with; his absence is palpable. On the nights he’s away, I spend the evenings rattling around our house, feeling unmoored and unsettled, after I put Andrew to bed. I’ll usually go to sleep early simply because I don’t know quite what to do with myself. I miss the emerging ritual of our family dinner, with Andrew “setting the table” as I imagine Jackson Pollack did as a child – flinging placemats and utensils with a practiced randomness – and each of us talking about our days. I miss unwinding with Jay after Andrew has fallen asleep. We watch television or simply read together in bed. The rustling of his magazine pages, his feet fidgeting under the sheet, and finally, his snoring next to me, are like a familiar poem. I miss his warmth in the bed.

On a more practical front, it’s exhausting being a single parent for even a few nights. Cooking dinner, washing the dishes, mopping up the rice Andrew somehow compressed into the floorboards under his chair, coaxing Andrew into the bath, coaxing Andrew out of the bath, convincing Andrew that brushing his teeth is almost as exciting as watching a bulldozer in action, reading nine bedtime stories and then listening to Andrew cry mournfully because I won’t read “just one more book” for the tenth time, waiting for Andrew to fall asleep so I can tiptoe out of the room and check my e-mail, fold some laundry, and feed the cat. I don’t see how people do this by themselves day after day.

As much as I missed Jay on this recent trip, there was a piece of me that was relieved he was gone, simply because there was a break in our heating wars. I am not the only woman I know who prefers her house to be kept a good ten degrees warmer than her husband does. I have friends who claim there is some genetic difference that makes men want to spend their winters in the modern equivalent of a cave – damp, cold, and gloomy. One time, I arrived at a couple’s house for dinner, only to find the woman wearing a hat inside, and the man grumbling about her wasteful use of central heating. Whatever the reason for this gender dichotomy, it is real.

Jay and I have bickered about the heat for most of our relationship. When we first started dating, I was amazed at how cold and damp his house could be in California. You could practically see your breath in the winter. Soon after we moved in together, we launched our thermostat wars. I inched the temperature up five degrees; he’d bring it down seven. It wasn’t just about numbers on a dial, though. For me, the word home connotes warmth – both physical and emotional – and the thought of swaddling myself in a down coat in my living room isn’t just unpleasant, it feels like a betrayal of my sense of home. Jay is more practical and less symbolic. For him, heat means money, something which we’re always short on. When I reset the thermostat, Jay doesn’t hear the comforting clanging of the pipes warming up, and he doesn’t revel in the coziness around him. Instead, he hears the rustle money wasted – burned up in the vents of our home.

We don’t wage our war by yelling at one another; instead, we eye each other warily, watching vigilantly for the other to tamper with the heat setting. We amused our friend Amy, who was visiting for a few days, to no end. One of us would casually pass by the thermostat and raise or lower the temperature; a few minutes later the other would just as nonchalantly reverse that action. I’m sure that viewed from the outside, our antics are pretty entertaining, a sort of I Love Lucy send-up. But the way that I was beginning to feel about the matter was changing. I started snapping at Jay instead of cajoling him to make it warmer. The stakes seemed immeasurably higher.

As I’m sure most people lucky enough to ingest high doses of prednisone know all too well, mood swings are one of the drug’s most pernicious side effects. Depression, erratic shifts in mood, and anger are fairly common not only when starting the drug, but also with any increase or decrease of the dose. In Jay’s absence, I had the space (and the body heat) to reflect on my waspishness about matters as mundane as the thermostat. Over the past few weeks, as my daily dose of prednisone has decreased ever so slowly, I have become enraged at him over insignificant things – a tone of voice, an assumption he makes about my schedule, leaving the floor unswept, arriving home late from work. I’m not proud of these outbursts, and I’d like to blame them solely on the various fluctuations in my brain chemistry caused by prednisone. But that’s not really true, even though Jay teases me, “It’s not you, honey, it’s the prednisone.” No, I have been mean to him precisely because I can be.

I’ve done a fair amount of reading about chronic illness. Most books on the subject devote at least a chapter to the partners of the chronically ill. The standard line is that it’s not just the person diagnosed with the disease who suffers, but the entire family. Everyone has to deal with loss, anger, fear, and sadness. This is certainly true in our experience. Although Jay is too kind to remind me of it, his life has changed immeasurably in the wake of my diagnosis. His incredibly fit, independent, and self-sufficient wife morphed into this bloated, exhausted, needy woman, who can scarcely attend to the household chores each day. Instead of playing basketball after work or training for a marathon or taking a photography class, he dashes home to help care for Andrew or cook dinner. And he gets very little recognition for his efforts. While friends and family are quick to recognize how difficult my life has become, few seem to even consider Jay. If they ask him how he is, they’ll accept his answer of “fine,” without even pondering how utterly not fine he must be. Jay, like other family members of the chronically ill, exists in a constricted and tenuous space without clear-cut rules. There’s no question that sarcoidosis has stricken him just as much as me, but there is no room for him to acknowledge this. He must remain steadfast, earning our health insurance and the money to pay our bills, propping me upright at appointments when doctors discuss my mortality, making plans with my sickness always in the back of his mind.

However, one thing the books never discuss in their chapters on families is the dirtiest little secret of the chronically ill. We can be complete assholes. People who are sick and tired get mean. They get angry. They lash out. Let me be more specific. I get mean. I get angry. I lash out. And the person I take out most of anger on is the very same person who keeps me alive and who sustains me – Jay. Why? I ask myself over and over. I’ll say it again: Because I can. When you live in chronic town, it’s difficult to yell at a doctor for telling you that you might not live to see your son turn ten. You need that doctor to keep you as well as she can, to keep writing the prescriptions for the drugs that keep your illness at bay. Moreover, you and the doctor exist in a socially sanctioned space that doesn’t allow for your screaming. Doctors have tested me unnecessarily, kept me waiting for what must add up to days of my life, misinformed me, and scared the shit out of me, but I’ve always maintained a veneer of calm and respect with the white coats. Because I have to. But all that anger and despair and bloody fear goes somewhere. Lately, it’s been burning out of my eyes in a cold stare whenever Jay turns down the heat.

I hate it that I can’t keep my family separate from my illness. It makes me want to cry that when Andrew is running pretend errands on his toy taxi in our living room, he usually makes a stop at the pharmacy to “pick up Mommy’s medicine.” How can it be that my little two-year-old is a perfect gentleman with me, always asking solicitously about my health and my latest doctor’s appointment? Even more, I hate it that I take so much out on Jay. We pledged to remain by each other’s side in “sickness and in health,” but no one explained that sickness can linger for so long and make a person unbearably grouchy.

This weekend, after Jay returned from his trip, we spent some time just talking. “You have to trust me,” he said over and over. “I’m not going anywhere.” I was upset because I am fat, because I don’t have a full-time job, because I need him so damn much. “You have to trust me.” He loves me even though I am occasionally mean; he loves me even though I look like a different person; he loves me even though I am sick.

I want to never lash out at him again. The odds of this happening are slim. But I need to try. Just as he tries to hold together the house of cards our life has become. His mother once asked him how he managed all the stress and sadness in his life. “By putting one foot in front of the other,” he said. I can’t keep my illness from hurting him. I know that. But I need to try – better and harder than I have been. “One need not hope in order to undertake one’s work,” Sartre wrote in Existentialism and Humanism. He should have added that you can always put on an extra sweater. That’s what I’ll be doing this winter.

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A Nice Chianti, Anyone?

October 11, 2006 at 12:09 pm (Uncategorized)

Like most people, I don’t spend much time thinking about my liver.   It is a distinctly unsexy organ.  Unlike the mercurial heart, always thudding and announcing its presence in your chest, or your high-tech brain busily making you crazy, your liver just lays there, large and flabby.  The poor liver’s one shot at notoriety came with Silence of the Lambs, when the mass-murderer and epicurean Hannibal Lecter recalls consuming a victim’s liver with fava beans and a Chianti.

However, in the past few days, my thoughts have turned to my liver (sans beans or wine) after some routine blood work revealed that my liver levels are out of whack.  Ever since I was diagnosed with sarcoidosis in 2003, my liver has been affected.  From what I understand, it’s fairly common for the disease to impact the liver, but the consequences are rarely serious or fatal.   Very few sarcoidosis patients ever need a liver transplant.

What puzzles my doctors is that my liver tests continue to worsen, even though the sarcoidosis in my heart and lungs seems to have improved on prednisone.  The results are apparently bad enough to warrant a battery of new tests to rule out other liver problems.  I have an ultrasound later in the week, and have already had eight vials of blood drawn to look for things like Hepatitis C.

When I found out that my primary care doctor was screening me for Hep. C, I was confused.  Although I’ve picked up quite a few bad habits over the years, like drinking epic amounts of coffee, obsessively biting my nails, and surreptitiously reading entertainment magazines, I have yet to take up intravenous drugs.  I told my doctor this and she said, “Well, we just need to be sure.”  I sense that my liver will become yet another diagnostic puzzle that the white coats want to solve. They will likely fail because they are doing the equivalent of fishing by firing a shotgun into a darkened pond inhabited by one fish.

I spoke with my sarcoidosis specialist in Philadelphia about the significance of the worsening liver function tests in relation to my sarcoidosis.  She was very nice and chatted with me for a while, but really, all she did was tell me nine different variations of “I don’t know.”  It’s the same old refrain every sarcoidosis patient hears over and over: not enough data, not enough data, not enough data.   If the sarcoidosis is indeed resurging in my liver, she said that, yes, it could mean it is staging a comeback throughout the rest of my body, or it could simply mean that the disease has decided to vacate my heart and lungs and occupy only my liver.  The image of hundreds of renegade granulomae converging in the depths of my liver to hold a techno rave distracted me.  Then she said it could be another liver problem, like cancer.  That got my attention again.

I was pretty upset after learning all of this.  It felt like I had been given the world’s shortest reprieve a couple of weeks ago in Philadelphia when I got permission to continue tapering off my prednisone.  One minute, everything is looking better, and I am optimistically envisioning a future with fewer doctors; the next, I have a social calendar consisting entirely of medical appointments and testing.  It would be thoroughly depressing if it wasn’t so familiar.  Also, being the naturally sunny person I am, I immediately assumed I either had metastized liver cancer, or that the sarcoidosis had returned to my heart and was at this very instant causing irreparable harm.  It took me a few days to talk myself down from this psychic ledge.  I didn’t turn on the computer because I knew I lacked the self-discipline not to immediately look up liver problems on the Internet, and thereby truly cause some heart damage by reading every possible worst case scenario.

This is what having a chronic disease entails, right?  I will always have to deal with it, and I will never move entirely out of its grasp.  As my sarcoidosis specialist said, I need to wait and see.  If I wasn’t so concerned about my liver, I’d opt for plenty of nice Chianti to help me with the waiting.  Instead, I’m having tea.  As for the seeing, I’ll leave that to the White Coats.  What else can I do?

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To Sleep, Perchance to Freak Out

October 4, 2006 at 11:26 am (Uncategorized)

I’m in the midst of one of my daily crises. Unlike my husband, I’m not worried about making the next mortgage payment. Unlike my son, I’m not concerned with acquiring the next in a very long line of Thomas the Tank Engine merchandise. Although I do wonder if the mortgage and the tank engines are causally related – as in too many tank engines mean not enough mortgage money – my crisis is more mundane. I can’t decide if I need a nap.

I am sure that I want a nap. I was awake for much of the night with body aches. No one told me that when you whittle down your daily dose of Lucifer’s Medicine (oops, silly me, I mean prednisone) a minuscule amount, every bone in your body will feel like it received the Kathy Bates treatment a la Misery. I was so achy, I even contemplated running a hot bath in the middle of the night, which likely would have roused Andrew. Since my son is awake more than he sleeps most nights, I must have been feeling exceptionally poor to risk endangering Lucifer Child’s (oops again, I mean Andrew’s) slumber. I finally drifted off sometime after two, only to be shaken (literally) awake by Andrew sometime after seven. “Mommy, I have to go poopie,” he said, quite loudly, in my ear.

Our babysitter Andrea didn’t arrive until around nine, which gave me nearly two hours to guzzle just enough coffee to elevate my heart rate without making me feel even slightly more alert, as well as to psych myself up for my day’s plans: write a blog entry, work on an essay to submit to an environmental magazine, do some reading for an historical essay, work out at the gym, and attend physical therapy for my sore neck and shoulder. Dash home and shuttle Andrew to his Mommy and me music class, then spend a few minutes at the library tracking down Lyle the Crocodile books we haven’t read, and finally meet my husband Jay and a colleague for a drink at one of the many bars in town that allow children, as long as you don’t try to order them an alcoholic beverage. (It’s a good thing that law is on the books; there have been evenings when I’m convinced all Andrew needs is a shot or two of whiskey to ensure a night of solid shut eye).

Fine and productive as these plans may be, there’s a catch. I am so damn tired, it is painful to be awake. It hurts to walk around the house, and my mouth feels fuzzy. Forming words seems an awful amount of work. My stomach is churning with acid, my head is throbbing, and my bones hurt. It wasn’t until I got sarcoidosis that I experienced fatigue like this. I’m so tired I feel diseased.

I know that if I climb into bed and sleep for a couple of hours, I will feel better. Not great, but less likely to break into little shards of myself. Resting now might mean not catching the latest microbe that Andrew will assuredly pick up in his music class; it might mean being less grumpy with Jay this evening; it might mean having more energy later in the day (and the week) for my work, my family, and myself. I know that the main reason we hired Andrea (and the main reason that Jay’s Mom helps us pay Andrea) is so that I can rest– and get well (or at least not get sicker).

Still, do I need a nap? There are things I want to do with my life. They involve becoming thinner, winning a Pulitzer Prize, and making scads of money writing. Napping is not part of this plan. But lately (like the last three years) all I seem to do is rest. I have half-convinced myself that I’m not actually sick enough to need rest; really, I’m just a faker, and I would feel better if I went for a brisk walk or wrote an essay. “Prop those eyes open with toothpicks, Rebecca, and get to work!” But I’m so damn tired.

Ay, there’s the rub indeed: it’s psychically easier to think of myself as a malingerer than to admit I can’t keep up with the life I envision for myself, that I need a nap instead of just wanting one because I’m lazy. So, I have my daily go-round in my head. “Exactly how exhausted are you?” I ask myself sternly. “Well, very,” I answer meekly. “Slacker,” I tell myself, before falling asleep. “If you’d get up and do something useful, you’d feel less tired.” Sleep brings oblivion; the dialogue will remain unresolved, until tomorrow, when I can start it all over again.

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Zen and the Art of Prednisone Weaning

October 2, 2006 at 1:51 pm (Uncategorized)

I re-read my last entry, and was impressed by the amazing balance of its author. Really, her ability to revel in the small victories – a milligram of prednisone here, a few extra months away from a doctor there – without worrying about cures and the big, bad picture, is admirable. “That woman truly has her psychological shit together,” I thought, before remembering, “Wait. I wrote that. And I meant it.”

Directly next door to the Zen Woman who wrote my last entry lives her disfigured twin, the “Get me off this freaking drug right freaking now” Woman. They share space in my brain. Right after I got my good news in Philadelphia, Zen Woman was the first to come out and bask on the front lawn of my consciousness. She calmly waved an incense stick of patchouli, and proclaimed that the harmonious whole will be fine. Since then, though, I have dropped exactly 1.5 mg. of prednisone, and in the process, have developed full body aches that feel as though someone has been twisting my ligaments while I sleep. I’m also having to take another round of antibiotics for my Sinus Infection Without End. Hence, the lack of one drug, as well as the addition of another, are making me feel like barfing, but carefully, so as to not disrupt my bones.

Perhaps it’s come across in past entries that patience is not my best quality. I think the forces of the universe (to the extent that they track such things) must find it highly ironic that I, of all people, came down with a chronic disease. I don’t do chronic. At least not well. I am the youngest sibling of four, and I spent my summers running to keep up with my two older brothers and sister. I learned early on that you’d better be snappy if you want to stay with the pack, and that waiting patiently for something isn’t going to make it happen. I even wrote a horrendous poem in tenth grade lambasting the “golden virtue” of patience in highly overwrought metaphors.

I feel like I’ve accomplished a few things in my life by seizing opportunities where and when I find them. But I’m ill-equipped to pace myself. When I was thirteen, I decided I was going to be a bicycle racer. Countless trips to the velodrome, sneers from lecherous older cyclist men, and hard falls to the asphalt didn’t deter me. Eleven months later, I was racing in the National Championships in Seattle. Four years later, I just as precipitously decided I had had enough of seven hour training rides and sub-ten percent body fat, and I quit. Notice the lack of a “taper?” When we moved to Palau, I decided I wanted to teach, so I plagued the administrators at the community college until they signed me on. Then I taught near the maximum load for a few semesters until we moved back to the States. Full steam ahead.

Now I’ve had the tantalizing goal of being off prednisone dangled in front of me. And I want off. Now. Right now. Yesterday, in fact. Yes, I know why this taper is being constructed at such a maddeningly slow pace – the last time they dropped my levels more rapidly, the sarcoidosis flared right back up. But, damn, I want off this drug. If I’m going to ache and feel like I have the flu from a measly 1.5 mg. decrease, why not be more aggressive and knock off 5 mg. at a time? Why not just stop altogether?

I counsel my inner thirteen year old itching to take a spin around the track that full-out sprints don’t always win the race. Think of a good NFL team, I tell myself. More often than not, they win a game not by winging a fifty-yard pass into the end zone, but by dinking and dunking the ball a couple yards here, a few yards there, steadily progressing down the field. They focus on simply moving the chains until the force of their momentum carries them into the end zone. Or so I tell myself. Over and over again. Zen Woman clucks her tongue at “Get me off this freaking drug right freaking now” Woman and says, “Day at a time” and reminds her of a sign I saw the other day: “Long doesn’t mean forever.”

But it sure feels like it.

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