Cats, and the Herding of Them

April 26, 2007 at 5:35 pm (Uncategorized)

cats.jpgI haven’t had many opportunities lately to work on this blog. For one, I’ve had actual, honest-to-God work to do, which, let me tell you, can certainly get in the way of soliloquizing. Second, I’ve been preoccupied with what I’ve affectionately been calling my TFH (tooth from hell). Yesterday I finally had part one of a root canal performed. Hopefully, this friendly little $1,800 procedure will help alleviate the constant, gnawing pain I’ve been having, and thus make it easier for me to concentrate on thoughts and words.

However, the major obstacle to me writing lately has been my husband Jay’s work schedule. He has spent the last few months trying to negotiate a settlement between one of Montana’s largest Native American tribes and the state about various water issues. Truthfully, I don’t understand a whole lot about what is involved. Whenever Jay starts talking about his job, he starts tossing out legal and geological technical terms, and pretty soon, all I can understand are words like “and,” so I start nodding my head as if I comprehend him, but really, I’m bobbing my head in an attempt to make my TFH stop hurting. All I can tell you is that in his current capacity, Jay has to get various state agencies, a tribal council, three distinct federal bureaus, and various confederations of Montana farmers and ranchers to agree. Its like herding cats. And then, once you’ve herded them, coaxing the cats to each balance on one leg, play the viola, and hum the choral part of Beethoven’s Ninth Symphony. Impressively, he got them to do pretty much everything but the humming part, and then everyone freaked out, dropped their violas, and ran back to their respective bureaucracies.

The result is that he has been spending an inordinate amount of time on Montana’s so-called Hi-Line, a windswept and sparsely populated stretch of Northern Montana, just below the Canadian border, that features metropolitan hot spots like Havre (pronounced Hav-ur), Cut Bank, Shelby, and Valier. Though the landscape can be bleak, it is strangely beautiful. You can see the northern Rocky Mountains of Glacier National Park looming out of the undulating and seemingly endless prairie. The wind seems to scrub the air and the people on the Hi-Line. There’s not a lot of flowery speech or grand gestures up there. The farmers rely on water; the towns rely on the farmers, and the Tribe wants to rely on the water in the future. Nobody especially wants to trust a lawyer, especially one that is asking them to play the viola – or, in this case, give up a piece of what they want. I find it doubly impressive that my husband (the viola touting attorney) made friends and advocates among all the different factions and contingents, even the lawyer-hating ones.

Jay’s peregrinations around the desolate vicinity of Highway 2 has meant that I’ve been home, temporarily single-parenting my three-year-old son Andrew, for significant stretches of time. I’m pretty adept at finagling dinner invitations out of friends, and my parents frequently drive four hours to help out with my busy boy when Jay is gone. Nevertheless, I’ve had more than a few nights alone, when Andrew has tossed his dinner on the floor, refused to get out of the bath tub, or boycotted his bed, and all I want is to call out “tag” to my husband and switch off parenting responsibilities. But Jay can’t quite come coax Andrew into bed when he’s convincing a roomful of taciturn farmers to give up some water. Same skill – different setting. Darn those laws of physics that mean we can’t coexist in two places. Leaving matters of physics aside (at least until they figure out a way to beam my child back into his bed a la Star Trek in the middle of the night), I am proud of Jay and the inroads he made.

But on more than one occasion, my selfishness and grumpiness have gotten in the way of me being wholly supportive of him. I mean, the guy was working ninety hour weeks and conducting six-hour long conference calls on the Saturday before Easter. There is only so much to say about water, right? Apparently not. Apparently, there are more words to speak about water than there are drops in the ocean, and my husband must have uttered some high percentage of them in the past months. I was cranky – and even surly – when he’d come home from the office at ten o’clock at night, or when he’d be gone for days at a time. I complained about being alone; I griped about his absence. I should have done a better job standing by his side, just as he has been by mine at various medical facilities around the country, at endless diagnostic procedures, at many nights when I’ve been too sad and too afraid to talk. He never said, “What about me?” Or, “How much more can we say about sarcoidosis.” He was just there.

Jay has many good qualities. He’s smart; he’s funny; he’s handsome; he can run a marathon; he can coax Andrew to sleep three nights out of ten (which is a nearly miraculous average); he can quote books he’s never read; he can write a legal brief one day and a funny essay the next; he calls his grandmothers every weekend. But what Jay does best is be loyal. He will never abandon a friend, never walk out on someone, and, I’ve learned, will work himself to death out of loyalty to the people involved. Jay believed in those farmers and those Native Americans. And just like he’ll never (or else!) walk away from me because I’ve gotten very ill and very chubby, he wouldn’t walk away from endless conference calls, from various factions pointing their fingers and flinging down their violas. He made a commitment to work on negotiating a deal, and once he pledges something to himself and to others, there is no going back.

There were many evening when I wished Jay would be less scrupulous in herding his water-related cats. But, if he had half-assed a meeting or “forgotten” a call, he would have been miserable. He would have been untrue to himself. There are many things love can ask of another, but to require someone to be unfaithful to himself is not one of them.

I think I also realized somewhere in the middle of this extended process that Jay actually likes gigantic bureaucratic messes (such as these extended water negotiations) precisely because they are ungodly messy – and he still has a chance of fixing them. He has told me time and again that the aspect he hates most about me having chronic, multi-systemic sarcoidosis that resists all treatment is that he can’t do anything to make me better. He can’t halt the disease’s progression; he can’t make my own ridiculous immune system stop misfiring; he can’t make my body magically absorb the drugs. All he can do is stand by me, which is does (and does well), but that doesn’t feel like enough to him. The wild cats of sarcoidosis refuse to be herded, and express no musical inclination whatsoever.

He’s come excruciatingly close to nailing out an agreement. It might stick, or it might all fall apart because of political agendas. Whatever the outcome, I think my steadfast husband has enjoyed being enmeshed in a tangled, tortured Gordian knot that he had at least the chance of cutting. Or else, maybe he’s just a repressed cat rancher, always on the lookout for a herd of felines and a rousing musical refrain.

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The Violin String

April 18, 2007 at 5:48 pm (Uncategorized)

toothache.jpgI have a toothache. The specifics of the dentistry drama I’ve been enjoying– root canals, roots cracking, crowns not crowning– aren’t important. Suffice it to say that I’ve spent much of the last few nights awake, feeling my tooth throb in time with my heartbeat. I have to wait one more week before I can go to the endodontist and have them either fix this thing or extract it.

Having a toothache is a drag, but it certainly isn’t the end of the world. Unfortunately, even though I keep reminding myself of this fact, my toothache feels like the end of the world. I feel personally persecuted to have a mouthful of lousy teeth that resist any kind of dental interference; I feel as though it is unfair to have yet another part of my body malfunction and cause me time, expense, and pain. I want to follow the dentist home and have him install a morphine drip. Really, that’s how much I am over-reacting.

I used to not be quite so hysterical about all things medical– and painful. Just a few years ago when we were living in Palau, I had minor foot surgery performed without any type of anesthetic. “Let’s just get this done,” I thought. I used to go routinely to the gym, teach an aerobics class, or bike a few dozen miles– when I had bronchitis. After major ankle surgery, I set my bike up on its stationary trainer two days after surgery and rode for an hour. Pain? No problem.

I’d like to think that sarcoidosis hasn’t changed my personality along with my organs, and that I haven’t devolved into the world’s foremost whining wimp. What the illness has done, though, is sap me of my resiliency. Like an overzealous tuner of a guitar or violin string, sarcoidosis has tightened me to the point of what sometimes feels like breakage. There is no more “give” in my life. Thus, everyday obstacles, when they are plucked on the taut violin string of my life, seem as though they could shatter me.

Not only do minor obstacles feel much more significant when you have a chronic illness, they often are more serious. When you take a handful of immune suppressants every day, and also have an underlying disease that takes up most of your body’s energy, chances are that something that should be insignificant usually ends up being fairly dramatic. Most of the people I know with serious chronic illnesses don’t get things like colds or bladder infections; instead, minor issues rapidly escalate into major ones– pneumonia, kidney problems, etc. Just as our emotional wires are a little too tight, so are our physical ones. There is simply no room for error in chronic town.

I’m not alone in this. For instance, last week, Nancy, a faithful reader of this blog, wrote: “I have had the 24 hour flu/cold everyone else had….this whole week! and am experiencing the mouth sores and stiffness that everyone “handles” with Tylenol. Feeling like a slacker – know that every time I deal with what everyone gets, my symptoms are louder, longer, stranger…”

What’s doubly troubling about the over-tightened violin string phenomenon of chronic illness is that it makes me look and feel like a hypochondriac. Every sniffle I contract makes me want to run to the doctor and get a course of antibiotics. There is some rationality in this, given that for the past three years, every time I get a cold, within four days, it has indeed turned into a sinus infection, bronchitis, or pneumonia. But, still, I don’t like being so attuned to my body and its vicissitudes. I hate having to take my health so seriously all the time. I want to feel tougher again, instead of thinking perhaps I need to seek medical attention when I get a splinter.

The truth is that I am progressing through life in emotional and physical overdrive. I think it’s part of having a chronic, potentially fatal disease that requires constant check-ups and new medications. Sometimes it’s easier, like when my health is relatively stable, my treatment isn’t changing, and I can stay away from all thoughts medical. But there are other times–like now– when I am feeling lousy, when I’m about to start getting infused with a new (and scary) drug, and thus must spend more time with physicians, thinking about my health. This doesn’t make me a pansy, or a hypochondriac– I hope. It is merely yet another side effect of living in chronic town. The trick is to loosen the violin string just a little, to remind myself that a toothache is just a toothache, and to move on from there.

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Set Back

April 12, 2007 at 1:57 pm (Uncategorized)

In case you haven’t noticed, I’ve been avoiding the computer screen. There’s some strange alchemy that takes place when my fingers tap out words for the world to read. It makes the circumstances of my life feel real– very real. Once I’ve posted the details in black and white, it’s hard to run away from the truth. And running away from the truth (or else just tip toeing around it) is sometimes the easiest way to deal with bad news.

On Friday, I went to the rheumatologist in Billings and learned that my two months of Enbrel– the most recent drug my doctors have tossed into the open jaws of my sarcoidosis– is not working. My sarcoidosis-related arthritis remains about the same (except for a minimal easing of the pain for a day or two after each Enbrel injection); my highly abnormal liver levels (attributed to sarcoidosis) persist in abnormality; the various sarcoidosis-related factors in my blood are virtually unchanged; and now, I have a sarcoidosis skin rash on my arm. What all this means is that the Enbrel/methotrexate combination doesn’t even seem to be containing the disease to certain organs.

The rheumatologist says it’s time to try something new. In about a month, unless my health has dramatically improved, she wants to switch me from Enbrel to Remicade (the brand-name for Infliximab). Remicade is a more powerful anti-TNF agent in the same family as Enbrel. Like Enbrel, Remicade acts to reduce the amount of active tumor necrosis factor, which prompts an immune inflammatory process. However, Remicade needs to be intravenously delivered at a medical facility, and stays in the body for much longer than Enbrel. This means if I opt for the Remicade, I’ll have to get infused with the drug at a cancer center (given the limited medical facilities in Montana.) Supposedly it takes about a half day to have one dose infused into me.

Now is the time to deliver my normal caveat. Things could be worse. They can always be worse, and there are lots of people with more pressing, more life threatening, and more debilitating conditions than mine now. I know this. But I’m still overwhelmed at the rapidity with which my body dispensed with the Enbrel. I feel like I failed in some way, like I’m not trying hard enough to make these drugs work. And I feel like no matter what I do next, it too will fail, and I’ll just have to go back on 60 mg. of prednisone a day and continue on my quest to become the human being most resembling the Stay Puff Man.

Part of living in chronic town is dealing with setbacks. Intellectually I know this is true, but, in my heart, I feel pummeled by what seems to be a litany of downturns and failures. The disease has left me fat, out of shape, in pain, with a heart condition, and a liver condition, and a joint condition, and now, apparently, a skin condition.

What a chronic illness like sarcoidosis does is sap you of your resiliency. Sure, anyone can cope with a setback here, a diagnostic side shuffle there, but three long years of chasing sarcoidosis around my body has left me brittle and sensitive to every minute vicissitude of this disease. I want to be Super Woman and say to myself, “So what the Enbrel didn’t work! I’m ready to give Remicade a shot! I’m excited for a new opportunity to squelch this disease!” But I’m not Super Woman. Instead I just want to crawl into bed, pull the covers over my head, and pretend the world doesn’t exist.

It’s odd, too, watching other people react to my latest news. See, when you’re not living something, you can take each event, each bit of news in and of itself. You can digest the fact that I’ll be starting a new drug, and then move on. What’s the big deal in having one anti-TNF agent fail if you can just try another? And what’s a little time in a cancer center? Maybe I can catch up on my reading, right? What you don’t have, though, is the three years of utter exhaustion from trying every possible remedy, traveling to different doctors, being tested and operated on, gaining hope only to lose it and then gain it again, being told I won’t live long, being constantly sick from secondary infections. Every bit of bad news I get now has to first travel down that long pipeline of history. And every bit of bad news now seems to make me reel, and then hide from it.

For now, I won’t try to force myself to think positively. I’ll just work on not hiding, unless I really need to dive under those covers.

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April 3, 2007 at 3:01 pm (Uncategorized)

I’ve been crying a lot lately.  I’ve been crying when I’m sad.  I’ve been crying when I’m scared.  I’ve been crying when I feel a sharp thrust of regret.  I’ve been crying when I think of the past.  I’ve been crying when I think of the future.  I’ve been crying when I see something beautiful, especially when it is fleeting.  I’ve been crying when my body hurts.  I’ve been crying when my heart hurts.  I’ve been crying when I feel grateful for all the love and support I receive.  I’ve been crying to my mom on the phone.  I’ve been crying on Jay’s shoulder so much that I’ve completely sodden his shirt.  I’ve been crying when I tiptoe into Andrew’s room and watch him sleep.  With all the crying I’ve been doing, we should mine the salt and make a small profit.

Usually, I’m not a crying type of person.  Ever since I was a little girl, I have found crying to be a messy inconvenience, an activity that ruins my mascara, fills my head up with snot, and leaves me feeling spent and sniveling.  So, I’ve typically swallowed my tears.  I like to feel self-contained, impervious to pain.  Crying has always made me feel weak, and if there is one thing I hate, it is feeling weak.  It’s not that I don’t want other people to see me as weak, but simply that I don’t want to feel weak– especially now when it seems that my life is high wire act in which I have to juggle a chronic illness, a small boy, a marriage, work– all at fifty feet above the ground.  It feels like misty eyes could very well make me drop all the balls and slip and fall.

The fact that I am writing about my current weepiness indicates that I am changing my views on the crying means weakness equation I’ve been following for most of my life.  Or maybe I’m just contemplating changing the equation.  Either way, it’s a shift for me.

I don’t want to play a sonata of self-pity, but my life is sad right now.  I live in constant pain from the sarcoidosis in my joints.  I also live in constant fear that the sarcoidosis in my heart will re-surge and cause me to keel over one fine afternoon.  Now, I know that lots of folks have medical problems far more debilitating and far more serious than mine.  Like I said, I’m not hosting a pity party.  But I’m learning (or trying to) that there is a difference between writing out embossed pity party invitations and recognizing the sadness in my life.

What makes me cry the most is when it occurs to me that this is not how I expected my life to be.  Of course, I know that no one gets to live the life of their dreams.  But in truth I feel my expectations were never the stuff of fantasies.  It’s not like I pictured an existence of wealth and servants.  Really, what I wanted was to live in a place I found beautiful, to go for hikes, to raise my child to believe there is more to life than consumerism, to do meaningful work, to love my partner, to matter to the world in some way.  It’s been hard to adjust to a life frequently spent in bed, to regular trips to the emergency room, to struggling to find the energy to work, to heaping extra pressure on my husband, to limping around the house on arthritic feet, and to having to turn over some of the care of my child to Andrea.   I think those losses warrant some tears.

But my crying isn’t all about not having what I want.  Yesterday, when my head felt like it was spinning seven million miles an hour, I went outside for a walk.  And miraculously, as soon as my feet hit the pavement, it began to snow– giant, spring snowflakes that were big enough that I could almost see their crystalline structure as they fell from the sky.  As it snowed, the sun emerged from the clouds and illuminated the hills and mountains surrounding out town, and made the snowflakes magically glow.  It was spectacular.  It was beautiful.  It felt like a sign from the heavens.  I cried the whole time I walked.  I didn’t care that people driving by swivelled their heads to watch the weird crying woman out walking in the snow.  I didn’t care that my nose was running.  I’m not even sure why I was crying.  But I think it was because the inexplicable beauty of the day caught me off guard and made me realize how precious my moments on this earth are and how fleeing they are.  How very fleeting.

It’s Passover now.  As part the seder– the ritual retelling of the Jews’ exodus from slavery in Egypt– you dip some type of green, like parsley (called karpas) into salt water.  If the karpas serve to remind us of spring, of the blossoming of new life and new freedom, then the salt water is to have us recollect the tears of our enslaved ancestors– and of all those unjustly enslaved now.  It also speaks to me on a personal level.  With every change, with every movement, with every growth, comes sadness.  And pretending the sadness isn’t there does a disservice to the growth and the renewal.  At least that’s what I’m telling myself when the tears start again, and I feel as if in some way, I am struggling to emerge– salty, but whole.

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April 2, 2007 at 1:27 pm (Uncategorized)

I found out a few days ago that the father of a friend was diagnosed with sarcoidosis. I spoke with both my friend and her mother at some length about this strange new disease that had entered their lives like an uninvited guest. It gave me an odd sense of deja vu to hear their tongues trip over the disease name. Sarcoidoisis, sacadosis, sarcoidosis, what does it matter? Pronunciation means nothing when your everyday life veers off the paved road you’ve been following, and heads towards the hills on an unmarked path of scrub grass and tumbleweed.

The conversations I had with my friend and her family were eerily familiar in other ways, too. Her father had gotten from his doctors what sounded almost verbatim the spiel I heard post-biopsy. “You don’t have cancer. It’s actually good news that you have this weird-sounding disease that you’ve never heard of before. Sarcoidoisis is rarely fatal; it’s manageable. Most cases remit spontaneously. For most people, this will just go away.”

So I told my friend and her family everything I know. I agreed that for most people, this disease isn’t a death sentence. I told them to use me as a resource for information, but not to consider me as a typical example of the disease. Most people, I assured them, only have the granulomatous cells that characterize sarcoidosis in their lungs. It’s unusual for the disease to do as it has with me and play hop-scotch in the body: heart, brain, liver, spleen, lungs, joints. “But be sure,” I said, as clearly and firmly as I could, “that the local doctors do an eye exam and an EKG.” And then I added, “Just to be sure.”

Being able to talk with these folks – and pass along practical and reassuring information – was strangely comforting. I remember the early days of my diagnosis, before I discovered there were support groups on the Internet and doctors that specialized in the disease, when I would spend hours trawling the Web, trying to separate the fiction from the fact and the tales of doom and death from the realities of a disease with an odd name. It wasn’t easy, especially after I was diagnosed with cardiac sarcoidosis, and most of what I found on the Internet seemed to involve mortality statistics.

Having an illness, especially a chronic one, is one of the loneliest journeys you’ll encounter. Even the best-intentioned of our friends want us to be happy and healthy and will sometimes let slip the occasional, “You’re still sick?” The physical pain of our conditions isolates us, and we hate to constantly remind people of our how lousy we feel because it upsets people and makes them worry about us. So we end up hiding the fact that our bodies hurt and that we can’t catch our breath when we walk, or that we’ve lost the feeling in our legs, or that our hearts and souls hurt even more than our bodies. After all, becoming sick doesn’t mean we suddenly lose our pride or our natural desire to take care of ourselves and the people we love. So we don’t ask for help as often as we should. And that makes us feel all the lonelier.

Writing this blog is my way of combating the loneliness and the fear. Nothing makes me happier than receiving a note or a comment from someone telling me that I expressed something they were thinking or feeling. I believe that these small connections are like sparks in the great blackness that is disease.

But community doesn’t necessarily begin or end only with fellow travelers on the chronic illness path. The people that love us learn about our disease and help us. Just last week my parents came and helped me care for my three-year old son while my husband was out of town for work.

And last night, our “hometown family” of Martha and Geoff made life a little more bearable during a difficult day. I had to go to the emergency room because I was having fairly intense chest pains, felt short of breath, and was passing out. Martha and Geoff took Andrew for several hours without even hesitating for an instant to ascertain whether it was convenient for them. Then the hospital ran a bevy of tests, all of which showed that my heart was just fine – or just fine for me. They said that sarcoidosis can cause mysterious chest pains, that the fact that I had stopped taking my pain medication cold turkey (after melodramatically flushing it down the toilet while proclaiming, “This is no way to live,” and then proceeded to also flush my high blood pressure medication I’m supposed to take indefinitely even though I don’t have high blood pressure and it makes me feel like shit) probably contributed to the situation, and the fact that I’ve had a week-long stomach flu probably caused the fainting. I spent most of time in the hospital feeling an intense pressure in my chest that made it hard to breathe. I was fairly convinced I was going to die – if not on this trip to the ER, then the next. It was unbelievably lonely and terrifying. What kept me grounded was knowing that Andrew was safe at Martha and Geoff’s and that Jay was next to me holding my hand and wiping my tears as they fell one by one. The doctors got me hydrated, made me promise to taper off my pain meds with the pills they sent my way – not to send them swimming with the fishes – and told me that even though I felt like a lunatic, I was actually doing a pretty good job of staying sane in the face of a serious and debilitating disease.

You are probably wondering why I’m divulging such a deeply personal and terrifying experience. Despite the fact that I blog, I’m actually a private person, not prone to opening myself up to the world’s voyeurs. I guess it’s one more attempt to strike a spark in the darkness that threatens us. I don’t believe I’m the only one who has judged life unlivable when having to take a handful (or two) of pills everyday (and half of those pills make me feel like I’m living on an outer moon of Pluto not here in Montana with my family); I don’t think I’m the only one with cardiac sarcoidosis who feels a thrumming in my chest that I assume is a heart attack; I don’t think I’m the only one who knows this disease will kill me and worries that this will happen sooner rather than later. But just like I think I made my friend and her family feel a bit better by knowing there are others walking and talking and breathing with sarcoidosis, my writing is an attempt to prove to myself that we (all of us) can live in chronic town – even on the days we think we are dying or losing our minds.

So let’s pretend we’re at an eighties rock show. Hold up that cigarette lighter. That flame, no matter how small, makes a difference.

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