Unpacking

September 27, 2006 at 10:00 am (Uncategorized)

I just returned from a week-long trip to the East Coast, where I met with my team of sarcoidosis specialists in Philadelphia to see whether the sarcoidosis in my heart and lungs has remained dormant on a lower dose of prednisone.

Cue the orchestra. Call in the choir. Join with me in singing, “Alleluia!”

The cardiac MRI and the echocardiogram revealed no evidence of sarcoidosis in my heart and lungs. This doesn’t mean I’m cured, but it does mean I can continue to whittle away at my prednisone dose. I’ve worked my way down from 40 mg. to 15 mg., and now, I have my doctors’ blessing to spend the next six months chipping down the dose to 10 mg.

As good as this news was, it was even better to learn that I didn’t have to return to Philadelphia for re-testing for six months instead of sticking to what had become my usual every-three-months routine. The cardiologist felt that assessing the difference between 15 mg. and 12.5 mg. of prednisone was a tad of overkill, so I can wait until March to get my next cardiac MRI.

Like I said, “Alleluia!”

Assuming my symptoms don’t flare up (and I am strictly forbidding this from happening), this six month period between check-ups will give my family the longest stretch of a normal life we’ve had since my almost three-year old son Andrew was born. I was diagnosed with sarcoidosis when he was three months old, and since then, I’ve had to travel to doctors at least every three months. Andrew has grown up accustomed to the rhythm of packing our bags and decamping to a hotel, where Mommy then disappears for days on end to mysterious doctors. But now, instead of having to balance the holidays with another trip to Philadelphia, we can spend Christmas and Chanukah at home, without worrying about anything more significant than whether or not to teach Andrew how to ski this year or to just focus on sledding and ice skating.

Alleluia indeed.

Several people have wondered if I’m cured, if these positive test results mean that my battle with sarcoidosis is done. I have no idea, and at this point, I don’t really care. I broached this topic with my cardiologist and pulmonologist in Philadelphia and encountered a first-rate dose of doctorly waffling. But hearing both that “anything’s possible” and that people with my “degree of organ involvement” are unlikely to go spontaneously into remission made me resolve to push aside the question of cures and focus instead on the known quantities of 5 mg./day less of a toxic drug flowing in my blood and six months of doctor-free time with my family. There are also the pressing questions of Andrew’s Halloween costume, an upcoming writing project, and cleaning out the garage to think about. I’m unpacking my bags. It doesn’t get much better than that.

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Good Vibrations

September 18, 2006 at 9:11 am (Uncategorized)

I had a good feeling about my health the other day. Perplexed at first by this unknown sensation, I wondered if I had indigestion. Or perhaps I had pulled a stomach muscle? But, no, the fluttering in my gut persisted, until it occurred to me that I was about to leave for my quarterly round of testing and doctors’ visits in Philadelphia, and I felt optimistic.

Ever since I was diagnosed with sarcoidosis in 2004, it often seems as if I’ve gotten nothing but bad medical news. I know that in many ways I have been incredibly fortunate because my particular manifestations of the disease are far less deadly than many others: my lungs have not been scarred badly, and the prednisone seems to have arrested the disease’s progression in my heart. Still, for a couple of years it felt as though every time I went to a doctor, which was frequently, I got slammed with some bit of crummy news or some dire prophecy from a physician: I might have some weird kind of cancer in addition to the sarcoidosis, or I had some heart condition of unknown origins in addition to the sarcoidosis; I’d have to have a defibrillator implanted, or I’d have to have a leaky valve replaced. On and on and on.

But three months ago, my doctors initiated a more calculated prednisone taper. And for the first time since I got this disease, I was able to drop down on my prednisone dose without having palpitations and feeling as though my heart was ready to do the jitterbug and was perfectly willing to hop out of my chest to find a new and more exciting dance partner than me. Also promising was the fact that I had two bouts of serious respiratory infections in three months, but my body was able to fight back without me needing to be hospitalized.

Then, last week, I met with an orthopedist to see if I would need surgery to repair the shoulder I injured in a car accident in June. The doctor was fairly gloomy the first time I saw him. In his opinion, he said, it looked as though I had torn my rotator cuff, especially since I’d been on so much prednisone for so long and the drug weakens tendons and ligaments. He scheduled an MRI to be sure, but I walked out of his office mulling over the best dates to have yet another operation.

The doctor smiled when he reviewed my MRI. It’s been a long time since a white coat has smiled at me in anything but a studiously sympathetic way. “Frankly, I’m shocked,” he said. “Your rotator cuff is perfect.” Perfect. Untorn. Not needing to be sliced and diced and stitched back together. The pain ands weakness in my arm stemmed from the torn triceps muscle, which needs nothing but time and rehab to heal.

It may seem like a stretch to extrapolate the good news from the orthopedist to my upcoming sarcoidosis visit. But I sense a turning within me. My internal fortifications held. The marauding army came to my own personal Maginot Line, and the line did not crumble. Nor did the invaders circumvent my defenses, as the Germans did (maybe Stalingrad is a slightly better analogy). For the first time in a long time, I feel as if my body did what it was intended to do – not what the sarcoidosis makes it do.

I am not by nature an optimist. “Expect the worst, and you might be pleasantly surprised,” has been my unspoken motto. Anticipating good news feels like nothing short of a jinx. The reptile part of my brain worries that by writing this, I am dooming our plane to plummeting from the sky, or to learning that sarcoidosis has riddled every organ in my body.

But, in some ways, no matter how vociferously I’ll tell you otherwise, sarcoidosis has made me a better person. It has left me no choice but to be optimistic when I feel the weird rumblings of positivism in my stomach and my soul. So many truly dark days – so many days of seeing nothing but blackness in the future – have left me with an appreciation for this glimmering that is akin to a wine enthusiast sniffing a 1965 Château Margaux. There are countless cliches about hope. And I’m starting to see that many of them are true. Wish me luck, please.

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Tunnel Vision

September 13, 2006 at 1:50 pm (Uncategorized)

I had an interesting encounter with a radiologist yesterday. In case you haven’t enjoyed my broad spectrum of medical encounters, I’ll just clue you in that “interesting” and “radiologist” are two words you never want to have in the same thought, much less experience.

I will be the first to admit that I enter any medical situation with my hackles up. I’m like my old dog Calypso, who ruffed up a mohawk of fur along her back anytime she smelled a whiff of anything suspicious. I’ve been to too many appointments, had too many needles stuck in me, and had too many MRIs, surgeries, spinal taps, and heart catherizations, to blandly go along with whatever the health care professionals have dreamed up for me.

Yesterday I drove the two hours to Missoula to have an MRI of the shoulder I wrenched in a roll-over car accident a couple of months ago. I was on time for my appointment, even though I had to climb a mountain pass and contend with fire-fighting equipment on the highway. I then had to wait nearly an hour and half in a plushly furnished waiting room before being escorted into the bowels of the hospital for an injection of contrast dye into my shoulder joint.

Once I disrobed and clad myself in that ultimate of degrading costumes – the scanty hospital gown – I had to wait for the radiologist, who had to use some type of X-ray fluoroscopy to pinpoint the location in my shoulder for the dye to be injected.

Dr. Radiologist, whose name I never learned, was apparently quite the busy guy. So busy, in fact, that after making me wait about two hours for his expertise, he couldn’t spare the two minutes to introduce himself and explain the procedure. Instead, two tech minions saw to it that I signed the necessary legal documents protecting Dr. Radiologist and his hospital from damages. Then they arranged me on my stomach, with my face buried in a pillow, my ass up in the air, and my breasts akimbo. Then, and only then, when it was impossible for me to even see his face, did Dr. Radiologist appear and proceed to jam a large bore needle into my shoulder joint.

In the grand scheme of medical woes, being deprived of dignity in such a limited way as this is a small one. When I mentioned to Dr. Radiologist that most other doctors allow their patients to interact first with them as human beings on equal footing, rather than immediately being splayed like a beached walrus on the bed, he seemed genuinely puzzled. “I’m sorry we offended you,” he said. It’s not that he offended me. Rather he reduced me – to slab of flesh, a knob of shoulder attached to an otherwise irrelevant body. If this experience was a one-off for me, if I didn’t have a chronic illness that requires frequent and invasive testing, I’m sure it would have annoyed me, but it would not have chafed as much as it did. It’s just that I am too accustomed to being distilled down to my disease. It’s precisely because I spend a great deal of my time with doctors and submitting to the tests they order that I feel such a need to be treated as a whole person – not just disembodied lungs, heart, shoulder, whatever.

The people who administered the MRI were solicitous. Perhaps they caught wind that a “problem patient” was in the tube. Or maybe they just genuinely regretted having to smash my sore arm into unusual angles so they could scan the shoulder and the torn triceps area. When the hour-and-a half-scan was over, I emerged from the thudding and wheezing of the MRI machine to find a $25 gift card for a chain of local gas stations on top of the hospital-issued clothes plastic bag for my clothes. “What’s this?” I asked, holding the card. “That’s from us, to let you know that we appreciate you,” the tech said. “Wow, thank you,” was all I could come up with as a response at the time, but on the long drive home through the dusk, I thought that perhaps I should have said that it was respect, not appreciation, that I needed, and that by giving me a cash card for gasoline, I almost felt more sullied by the experience. But I’m learning that there’s little to do when a doctor or a hospital upsets you. It’s better to move on. And who can argue with a free tank of gas?

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Kick Off

September 11, 2006 at 11:06 am (Uncategorized)

Yesterday I became a seasonal widow. Technically, I suppose, the grim period began on Thursday night when the Pittsburgh Steelers faced off against the Miami Dolphins in the NFL opener. But yesterday was the first game of the New England Patriots, and the first Sunday of the NFL season.

My husband Jay is not a football fan. Fan is a gentle word carrying with it for me the connotations of a delicate breeze. There is nothing soft about Jay’s loyalty to the New England Patriots. He watches their games with hands and feet made damp with nervousness; he bites his nails; he groans when they fumble, and when it looks as though they might lose, his face pales to a chalky yellow; he pumps his fists in the air with each first down they achieve and dances about the room for a touchdown.

For the first few years of our relationship, I witnessed Jay’s game day face on limited occasions. Living in California and Montana, the local networks usually broadcast the Oakland Raiders, San Francisco 49ers, Denver Broncos or Seattle Seahawks rather than the far-away antics of the then-mediocre Patriots. I’m also convinced that Jay hid the most rabid of his tendencies until we had officially tied the knot, making it legally entangling for me to escape him and his blue-suited heroes. The Pats did make it to the 1997 Super Bowl against Green Bay, where they were unceremoniously stuffed before sinking back to the franchise’s normal middling performance.

All this changed with the arrival of coach Bill Belichick. The Patriots claimed Super Bowls in 2002, 2004 and 2005. Suddenly, liking the team was trendy, and following their games made Jay happy instead of morose. We also got to see a lot more of their games when we subscribed to a satellite package that beams every NFL game into our home. Jay can record one game, and flip back and forth among the others, memorizing every statistic, analyzing each score for its possible implications for the Patriots.

At the same time as the Patriots’ ascendance, Jay also got involved with fantasy football. For those of you unfamiliar with the specifics of fantasy leagues, keep it that way. All you need to know is that millions of otherwise normal folks are made utterly insane by fantasy football. Fantasy players “draft” NFL players to make a “team” which competes against other fake “teams” for the season. Your individual “players” from different NFL teams are awarded points for game-day achievements.

Perhaps it is possible for a person to “play” fantasy football without it becoming an obsession that drowns out the rest of your life. I wouldn’t know about that. My reality is bleak. Instead of scrutinizing the minutiae of just the Patriots’ games, Jay now freaks out about every game because either he or his weekly opponent has fantasy “players” in nearly every match-up. It’s not even that Jay wants certain teams to win, but that he needs certain players to score points in certain ways. Madness, I tell you. I’ll come downstairs to find him out of breath, flicking between channels and games, muttering obscenities at players.

Fantasy Football caused some marital discord in the past. Not only was Jay totally loony-tunes for most of Sunday, but he also spent great amounts of time on-line before and after each game, gathering information to choose his roster and analyze its potential. He is hands-down the smartest person I know, armed with a brain that memorizes and regurgitates facts and figures like no other. With fantasy football, though, it’s like his brain ate itself for a few months each year. Every neuron was dedicated to gathering information about running backs, or lamenting the sacking of a favored quarterback.

After much bitching and moaning on my part, Jay agreed last year to scale back the insanity. He was even reluctant to spend the extra money to get all the different games, and said he was willing to give up entering any of the fantasy leagues. Oddly, I encouraged him to play in the league and to get the satellite package.

It occurred to me that in the wake of having a child and having me become chronically ill, Jay didn’t have a whole lot of fun in his life. He gave up running marathons for quick workouts on the treadmill at lunch so he could come home immediately after work to relieve me from Andrew duty. Same goes for the pick-up basketball games that used to consume him. He switched jobs so that he could spend more time at home, even though this meant leaving behind work he found intellectually engaging and morally satisfying. He picks up extra work to help pay the medical bills, and has pretty much resigned himself to the fact that every penny left over from our living expenses will go to paying a doctor or funding a cross-country flight to see a doctor. He volunteered for nighttime duty with Andrew, which means he rarely gets a night of uninterrupted sleep. On Saturdays and Sundays he wakes up early with Andrew so that I can get some extra hours of rest. He saves up his sick days and vacation days so that he can be by my side at doctors’ visits. This meant that he has dragged himself to the office with the stomach flu and with pneumonia. He holds my hand when we get bad news from the doctors, helps me compile lists of questions for my appointments, and celebrates when I’m able to drop a milligram or two on my prednisone. He’s never commented on the prednisone weight I’ve gained, never complained about how much our lives have changed, never made me feel bad for not being able to work full time.

Thinking of the myriad ways that Jay makes my life as cheerful as it is, drove home to me how much he has sacrificed to make it so. I could not ask for a truer friend or a more stalwart companion. What are a few hours of football on a Sunday compared to the lifetime of joy and understanding he has brought to me? So, if the Patriots make him happy, I say, “Go Patriots!” If he needs the running back Willy Parker to get lots of yards to win a fantasy game, I say, “Go, Willy Parker!” If it’s important for Drew Bledsoe not to get sacked, I say, “Stay on your feet, you moron!” Long live the NFL!

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The Handbook

September 8, 2006 at 12:41 pm (Uncategorized)

Today I am presented with a familiar dilemma. I am sick, both in the chronic and immediate sense. My lungs, already taxed by sarcoidosis, are struggling to fight off a case of bronchitis. I am on a strong antibiotic, but I’m still coughing and wheezing. Probably the best thing for me to do is retreat to my bed and read one of the library books piled on the floor next to me. Unfortunately, though, the very thing that will make me healthier faster is driving me absolutely and totally bonkers. Lying in bed is making me crazy.

What I want to do is putter around the house and tackle some of the clutter, bake some bread, put up a pot of soup for dinner, work on an essay I’ve been avoiding for four weeks, and then go for a brisk walk or a trip to the gym. Accomplishing a few things, as well as staying in a vertical position for a couple of hours, will greatly improve my mental health. But it will make me feel physically worse. I know because yesterday I forced myself down to the gym and onto the elliptical trainer, only to make my coughs richer and my head dizzier.

This is the part of being chronically ill that I’m not good at. I think when anyone is diagnosed with a chronic condition, they should be given a handbook that addresses concerns such as mine. It seems like there should be some quiz, akin to the ones in Cosmopolitan to rate your relationship, that would decide for you whether to languish or leap. Here’s an example:

Give yourself one point if your phlegm is yellow, two if it’s green, and zero if it’s clear. Assign one point for minor muscle aches and two for throbbing joint pain. Crushing fatigue earns two points; minor fatigue one. And so on. Those with a score below twenty can proceed to the gym. Those with a score below twenty-five can get out of bed. Everyone else should stay under the covers.

So many aspects of my life would be improved with a handbook. Parenthood, for instance, would be much easier if I had a simple guide to tell me what to do when Andrew refuses to sleep. I would have sailed through college if someone had let me in on the secret that just because three rum and cokes made me feel happy, three more wouldn’t necessarily make me that much happier. Alas, I’ve never seen the guides I need on the bookstore’s shelf. Instead, I’ve muddled along, figuring things out mostly by doing them wrong – repeatedly.

In a world without the corrupting influence of emotions, the decision of whether to lie abed another day would be easy. Better not to risk turning this bronchitis into pneumonia. However, the logic of this equation can’t penetrate to my core, where I am tired of the feeling of the pillow under my head. I sense time floating by around me, and I want to reach up and grab it. Or at least go for a few laps around the block.

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Roses are Red and Violets…Blast Off

September 7, 2006 at 10:48 am (Uncategorized)

The other night at dinner, my two-and-a-half year old son Andrew unfolded a paper napkin next to his plate and plunked his sippy cup of water down on it. “This is my doily,” he said, patting the napkin. “And these are my violets,” he added, with a gesture towards the sippy cup.

It took Jay and me a few seconds to make sense of this tableau. “Oh, you mean like in Bread and Jam for Frances,” we said in perfect unison. “Yes,” Andrew replied. “Of course,” as if we were utter morons.

Andrew seems to derive many of his reference points from the books he loves. The paper napkin scenario is straight from Bread and Jam for Frances, in which the feisty little badger learns to love foods beyond bread and jam. The particular scene Andrew was recreating comes from Frances’ school lunch, where she unpacks an elaborate mid-day meal (including a vase with violets) onto a paper doily on her desk.

My son, however, is not one to be confined by the parameters of a narrative. While Frances sat at her desk and daintily consumed her lunch so that all its courses “came out even,” Andrew had another, more exciting, ending in mind. He studied the sippy cup and said, “Now, the violets will blast off.” He proceeded to count backwards, as if he were presiding over a space shuttle launch. “Five, four, three, two, one, BLAST OFF!” he said, and then launched his sippy cup/ violet vase into the atmosphere above our table, all the while making many whooshing and roaring sounds.

Andrew’s antics pleased me on a number of levels. First, he made me laugh when I was in a crummy mood because of the rattling in my chest. I’m sick – yet again – and not the least bit happy to be coughing and confined to bed with another round of bronchial disturbances. I also love the fact that Andrew finds such sustenance and richness in the written word. As a geeky booklover myself, it delights me to think that perhaps my son is beginning down a path of lifelong reading. Truthfully, he prefers reading to television; on several occasions I’ve asked him if he wants to watch one of his construction videos, and he says, “No, let’s read,” even when I’m so tired that I’d prefer to drop him in front of the TV and go get a nap.

Mostly, though, I was delighted by the liberties that Andrew took with the Frances scene. He remembered the narrative action, used the pieces of it which appealed to him, and then forged an ending that suited him better. He was proving himself not to be a slave to what was already written, already accepted as “real.” In other words, he was being imaginative.

“We live in a tyranny of the literal,” Jonathon Franzen posits in his essay, “Why Bother?” At times, I feel this weight of the literal on me acutely. Why must what is visible, what is known, be the only acceptable reality? Why cannot two truths, two realities exist in a single moment? I was raised Catholic, informed by the doctrine of transubstantiation, so perhaps I shouldn’t be surprised that I ache for a more imaginative world than the one broadcast on CNN. For millions of Catholics everywhere, the Eucharistic wafer is both bread and flesh. The bread doesn’t hide the reality of the flesh, the theology goes, nor does the flesh inhabit only the imagination. Rather, both realities wholly exist.

In one of my college classes on medieval mystics, a professor presented the view that the doctrine of transubstantiation was deliberately mind-boggling, as was the notion of the Trinity (that God is somehow simultaneously three distinct entities, which would logically have to proceed from one another, but don’t). The point of making your head hurt trying to sort out how a priest could convert a wafer to the body of God, without losing the physical reality of the wafer itself, was precisely to make your head hurt, my professor said. The goal was to underscore how awesomely complex and beyond all rational thinking the divine really is.

I’m sure you are thinking, “What does all this have to do with violets blasting off into space?” Truthfully, not much beyond my desire for things to be as they seem – and also much, much more. Take my illness, for example. I’ve stridently proclaimed on this blog, that “illness is just illness,” and that to metaphorize disease into enlightenment is just plain bad. (and unfair to sick people, too) But I’m coming to realize that I need my sarcoidosis to be more than a random accumulation of white blood cells in my heart, liver, and lungs. I desperately need to take some greater meaning from struggling to live in the face of wheezing lungs, a racing heart, and chest pains shooting down my arms. I need my illness to transubstantiate into more than the triumph of dropping a milligram of prednisone from my daily dose, the seasonal cycle of MRIs, the seemingly endless parade of upper respiratory infections that break my monentum.

I feel like there is some deeper truth that I haven’t yet learned from my literal reality of testing, medication, and re-testing. This meaning eludes me now. But I’m pretty sure that the process of arriving at it isn’t far from that of Andrew improvising on Bread and Jam for Frances. The sippy cup, when wielded with the proper imagination, can be so much more – it can be violets, dangling from a vase, exploding out into the solar system, knowing no limits.

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Smoke Screen

September 5, 2006 at 9:25 am (Uncategorized)

Summers in Montana are usually beautiful. It is light until nearly ten o’clock at night, and, with the exception of a couple of scorching weeks, the days and nights are warm but not unpleasantly so. After months of cold weather and snow, people unfold into the sunshine and spend their time hiking, cycling, camping, horseback riding, and paddling the rivers and lakes. The air smells of pine needles; the sky is unreal in its blueness. I feel guilty for being inside.

Except when there are fires. We’re in the midst of a drought, and temperatures have been hotter than normal for the past few years. The forests that surround us have become kindling, and one dropped cigarette butt, one errant ember from a campfire, or one bolt of lightning, is all it takes to start a voracious fire that will consume thousands of acres of forest.

Our little town is surrounded by fires. Although there are none very close to us, the winds have brought the residue of distant conflagrations to us, darkening our skies, and making the air smell like a campfire. The sun is shining enough to make it hot, but it is obscured by the smoke and the ash. The skies look overcast and smoggy. For someone like me with a lung disease, it hurts to breathe. We have shut up our house, but nevertheless, the cold I caught last week has bloomed into bronchitis. I cough and cough. It feels as though my body is rejecting the air around me.

Fires bring with them a sense of foreboding. The thick air carries a sense of restlessness and waiting. I feel helpless – a pawn of forces impossible to control. I cannot bring rain; I cannot dampen the lightning. All I can do is cough and cough.

The weather and the hanging smoke perfectly match my interior landscape. My father had health issues this weekend. I drove up to be with him and my mother. Although he was hospitalized, it turned out there was little the doctors could do for him right now. They sent him home with a new medication. That’s all I’ll write about this because I don’t feel comfortable sharing other people’s medical dramas on my blog.

It is unpleasant, though, to be forced out of the role of patient and into a realm of helpless waiting and watching. As difficult as it is to be sick, I sometimes think it is better to be the one with the disease than the one who wrings her hands and shakes her fist at the sky and mutters prayers. It is horrible to witness someone you love being tossed about by disease.

I didn’t want to leave my mother and father and return home. But my friend, Amy, who was visiting from California, had to catch her return flight; Jay has work; and my parents insisted they were fine and needed to get back to their normal routines. They are fine. But rationally knowing they are fine doesn’t prevent me from thinking that somehow if I was there, I could do something or stave off catastrophe.

Sickness is all about the loss of control. When you become ill, you lose your authority over your own body. You tell your lungs to breathe, and instead they cough; your heart does things against your will. This weekend made me realize that it is not just patients who abdicate control. You can’t make the blood vessels inside your father’s heart behave; you can’t instill extra wisdom in his doctors; you can’t make medicine work a miracle. All you can do is watch and wait.

Sickness is like a forest fire. It feeds on the very stuff that usually makes life good – sun and storms. Once begun, there is little to control it. Of course, the state sends out the fire fighters with their special costumes, their high tech equipment, their chemical concoctions to pour on the flames. But the direction of the wind seems to determine the outcome of a fire – and how much land it will devour – more than the efforts of puny men and women. All the rest of us can do is wait inside, and hope the rain comes and soaks the ground.

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