Humira-ous

January 31, 2007 at 12:06 pm (Uncategorized)

On Monday the sarcoidosis specialist I see in Philadelphia called to discuss the results of my liver biopsy and my arthritis, and to plot my treatment course until I see her again at the end of March.

When she first got the biopsy data from my doctors here in Montana, she seemed to want simply to increase my prednisone yet again to see if this would check the sarcoidosis that is currently flitting from organ to organ like a debutante circulating among dancers at a ball. But then she spoke with the people here who can testify to the bulbousness of my hands, ankles, feet, and knees. She also took into the account the significant amount of weight I’ve gained on prednisone, how hard it will be to shed those pounds on twenty-plus mg./day of prednisone, and how negatively this prednisone weight impacts my health. Then there’s the whole matter that my sarcoidosis isn’t being controlled on the 15 mg./day of prednisone I’m currently taking. My liver levels are worsening; my heart is thumping around in my chest like it did when the sarcoidosis was active in my heart; and my hands are close to useless.

Her recommendation was that I take a drug called Humira — pending approval from my cardiologist that the new medication won’t deleteriously effect my heart. Along with the Humira, I’ll need to take a low dose of methotrexate. I spent some time researching Humira, the brand name for a adalimumad, which is one of the anti-TNF drugs primarily used to treat rheumatoid arthritis. Humira is a synthetic protein, which, when injected weekly or every other week, binds to tumor necrosis factor (TNF), a naturally occurring protein that is essential to the inflammatory processes (in the good sense) of the immune system. TNF has been pinpointed as one of the bogeymen of sarcoidosis. In an immune system gone awry, over production of TNF plays a role in forming granulomae — the little blobs of white blood cells that cause such problems when your body makes them in places they don’t belong.

“So far, so good,” I thought to myself. “Humira sounds like a wonder drug. A magic bullet. A cure. Why haven’t I been happily injecting myself since I was diagnosed?” I wondered. Then I read the drug’s contra-indications and side effects. I learned that taking Humira makes you much more susceptible to serious infections, particularly tuberculosis. TNF is, after all, a key player in the human immune system, and the inflammation it causes is our body’s tried and true response to segregating and destroying the pathogens that cause tuberculosis, listeria, and toxiplasmosis. Given that I’d be taking Humira with methotrexate — one of the cytoxins (literally “cell killers”) that were designed as chemotherapy and work to treat autoimmune diseases by suppressing the immune system — it looks like I will be left with immune system of a premature, skinless frog, put in a pot of slowly heating water. But that’s just my perception.

Reading the dire potential consequences of taking Humira (the pharmaceutical companies’ equivalent of a skull and cross bones) reminded me that there are no wonder drugs. Humira was only approved by the FDA in December of 2002, which means that many of its long-term effects aren’t known. At least prednisone’s evils were a known quantity. With Humira and methotrexate, I’ll be waltzing off in the wild blue yonder of pharmacology.

I got pretty depressed after talking with my Philadelphia doctor and reading about Humira. But then, I had also gotten pretty depressed at the prospect of upping my prednisone and taking that drug indefinitely. What did I want? I suddenly remembered stories that my oldest brother Ken would tell me on long car trips to entertain both him and me (and also to distract me from my almost constant need to pee). He would spin a narrative in his best sportscaster voice about me competing in the Olympics in my sport of the moment (either figure skating or gymnastics), against all kinds of sinister, thuggish Eastern block rivals (this was the height of the Cold War, after all). I was always the “Little American” with a heart of gold, skating or tumbling to perfection against all odds. The fictional awards ceremony was where Ken’s story got interesting, though. A big brother wouldn’t be a big brother if he gave you a happy ending without some suffering first. So, he would name the bronze and silver medalists before pausing and slowly saying, “The winner of the gold medal, the champion of the world, is…” And then he would almost say my name, but he would add an extra syllable at the end: “Rebecca J. Stanfel—jio. “But wait, there’s been a disqualification,” he would say, as I sat, nearly hyperventilating next to him. “The real winner is Rebecca J. Stanfel—avitch.” And this would continue for about a half an hour. “No wait! She was disqualified too. The actual winner is Rebecca J. Stanfel—ding. No wait! Ladies and gentleman! Another disqualification.” Just when I was about to burst a blood vessel, Ken would let the real me, with no extraneous suffixes on my last name, win the event — and with no additional disqualifications.

After the latest round of sarcoidosis-related trauma — the routine liver biopsy that ended in internal bleeding and more than a week in bed, the disease cropping up in a new organ every other day, my medication options limited to “Really Quite Not Good” and “Hey, That One Sucks, Too” — I wanted resolution in the vein Ken had delivered over twenty-five years ago. After all, I’d been sitting on the edge of my seat with sarcoidosis for three years, just like he kept me preoccupied on endless drives. I had been enduring a medical version of all those disqualifications: “But wait! The disease is in your brain. No it’s not! But it is in your heart. Wait! It’s in your joints.” Now I wanted to get a magic telephone call telling me it had all been a mistake, that the Evil Soviet — or the Evil Granulomatous Disease — wouldn’t win, that, in the end, all of this turmoil and trouble had been a mistake and that the Gal With a Heart of Gold would triumph. “But wait! You actually don’t have sarcoidosis. We’ve been looking at Rebecca J. Stanfel—jio’s records all along. You are just fine.” No need to take prednisone or Humira or even an aspirin.

At this point, I don’t even know how to assess whether the potential risks of Humira are greater or less than the ongoing risks of taking prednisone or the risks that unchecked sarcoidosis poses to my various organs. Since it seems unlikely that I’ll learn this has all been a dreadful mistake, I’ll do what I’ve always done. Learn what I can, put my faith in the doctors I have chosen, and hope for the best.  Yikes.

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Biopsy

January 25, 2007 at 12:48 pm (Uncategorized)

Greetings from the land of minor procedures gone awry. I have spent the last few days either flat on my back or in a hospital, having a hole in my liver monitored. I’ll save my exposé on anesthesiologists in small hospitals wielding large-bore needles for another day. Suffice it to say that I am -opsied out, after having a colonoscopy and endoscopy performed last Friday and a liver biopsy on Monday.

I’m not sure how to feel about the results I just received. The liver biopsy revealed active sarcoidosis. I suppose it’s good news that I don’t have liver cancer or some type of unexplained cirrhosis. Nevertheless, my primary care doctor described the inflammation as both “significant” and “serious” in one conversation. The GI tests ruled out weird varieties of fungi infecting my esophagus, but did show “granulomatous inflammation consistent with sarcoidosis” in my intestine. So I guess it’s good that I’m suffering from a single “known” ailment, but not so good that this single known ailment is running rampant.

What does this mean? I’m not sure. My primary care doctor is faxing the results to both my rheumatologist and my sarcoidosis specialist. They’ll decide if it’s time to try methotrexate or infliximab or some other new agent. My job is to let the bleeding hole in my liver heal. Most people have no trouble at all with liver biopsies. Apparently, in all things medical, I must be extraordinary. The needle hole from the biopsy bled and leaked bile into my gut, which caused pain at a level I have only experienced once before (during the the 16 hours of labor I endured before demanding an epidural for the remaining 10 hours before my son was born). On Monday, I ended up needing 40 mg. of morphine, which at best only dulled the pain. Unfortunately, the hole kept bleeding; but by promising to be a model patient I twice avoided hospitalization, and after the last CT scan, the radiologist was convinced the bleeding had actually stopped. I’m hoping this is true – though I’m still hurting, and am having difficulty moving slowly around the house.

I don’t think the ordeal of a simple procedure becoming decidedly complicated — or of discovering sarcoidosis in two more vital organs – has sunk in yet. I feel numb about it all, which I suppose is normal. Part of surviving a chronic illness, I think, is not letting bad news hit you all at once. Or maybe the pain medication is making me foggy. “Day at a time,” I keep telling myself.

Thanks for all the comments and good wishes. I’m hoping to respond to everyone individually, but, as you can tell, things have been crazy. But I really do appreciate everyone’s wisdom, courage, and empathy.

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Testing. One, Two, Three, Testing

January 18, 2007 at 2:15 pm (Uncategorized)

Tomorrow’s a big day. I get to drive four hours to Billings at the crack of dawn and have a colonoscopy. Then I get an endoscopy. Today, in preparation for tomorrow’s delights, I am getting to swill laxative and spend most of my time in the bathroom, contemplating matters of digestion better left unsaid. Monday will be another big day. I get to have my liver biopsied. No need to empty my innards for this biopsy, but I do get to thrill myself in the run-up to the procedure with thoughts of being harpooned with a large needle in a vital organ. At least both days of procedures involve being heavily sedated beforehand. There are some things – harpoons in the side and cameras in your intestines, to name a couple – that I’d rather sleep through.

Testing is the the sine qua non of managing sarcoidosis from a medical perspective. The disease, which can infiltrate any damn organ it feels like, is elusive. Once you have a systemic disease – one that impacts several organs – it’s easy to blame any symptom on sarcoidosis. Does your heart flutter? Must be the sarcoidosis. That pain in your side? Sarcoidosis. Rash on your face? Sarcoidosis. Tight little cough? Sarcoidosis. Add a catchy refrain and you have the makings of a Sondheim musical – or dangerous assumptions. Yes, the pain in your side could be sarcoidosis infiltrating your GI system, but it could also be appendicitis or a gall bladder attack, and leaving it alone, under the misguided belief that all things bad are caused by sarcoidosis, could kill you. Take my liver. The reason they are doing the biopsy isn’t to prove I have granulomatous cells – the marker of sarcoidosis – in my liver, but rather to rule out other liver diseases that could be hiding in the coat tails of the sarcoidosis.

Being medically prudent isn’t necessarily any fun, though. I’ve been tested for so much that I think my doctors could start a sizable sewing circle with the IV needles left over from my procedures. I’ve had more CT scans and MRIs than I can count; I’ve had spinal taps and EMG testing on my nerves; I’ve had electrical studies to assess the likelihood that my cardiac sarcoidosis will kill me without an implanted defibrillator, and a right heart catherization to check for pulmonary hypertension; I’ve had stress tests and stressful tests; I’ve worn heart monitors for thirty days and three days; I’ve had my lungs biopsied and then assessed in God knows how many rounds of pulmonary function testing; I’ve had X-rays and ultrasounds; and I’ve had enough blood drawn to keep an armada of vampires content for a decade or two. I’m tired of being tested. And I’m just plain tired. In my paltry efforts to psych myself up for the colonoscopy, endoscopy, and liver biopsy, I tell myself that it’s only three more procedures, that I’ve undergone worse things, that I can do this. Yes indeed, I can do this. I can swig the laxatives and listen to my guts roil and rumble until I dash to the toilet every fifteen or so minutes; I can follow the directions given by the doctors. And I will do it. But I am tired.

In addition to exhausting me, all this testing leaves me perplexed. I’m never quite sure what to hope for in the run-up to the procedures. For example, should I be hoping that the liver biopsy reveals significant evidence of sarcoidosis? After all, hepatic sarcoidosis is rarely fatal; even at its worst, you can get a liver transplant, and maybe another drug could knock out the disease. But is it a good thing to root for the disease taking over yet another organ? Should I instead hope they find some other treatable condition? But what if this condition is worse than sarcoidosis? What if I then have a chronic illness and some terrible liver disease? Or should I hope they find nothing, that this can be unsatisfyingly chalked up to the mysteries and vagaries of sarcoidosis? Who knows?

Jean-Paul Sartre wrote eloquently about the modern (and post-modern) necessity of letting go of hope in order to live fully and openly. “One need not hope to undertake one’s work,” he quipped in Existentialism is a Humanism. I’m sure that I am misapplying this dictum by thinking of it in terms of a lowly intestinal exam – You know, “One need not hope to undertake a thorough Rotor-Rooting and then a harpooning…” – but it helps. Not that one needs any hope for these procedures, simply enough faith in modern medicine to arrive at the appointed time with empty innards. Where hope does become problematic is in the realm of expectations – what should I expect, and what should I do if these expectations aren’t fulfilled? I’m learning that sometimes it’s better to leave hope at home and just go get another damn IV and deal with whatever results are found.

Please keep me in your thoughts tomorrow and Monday. Maybe you all can do some hoping for me.

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Moles and the Whacking of Them

January 16, 2007 at 5:00 pm (Uncategorized)

There’s an old arcade game named Whac-A-Mole, in which the object is to bash a fake mole with a mallet on its head as it emerges from one of many holes. The challenge is that just as soon as you successfully whack a mole, it quickly reappears out of another hole. You strike it; it comes back; you strike it again, and again it comes back. You get
the idea.

After a dismal day at various medical appointments in Billings last week, I’ve become convinced that my sarcoidosis is a student of this game. I was initially diagnosed with the disease in my lungs; a few months later, my heart became involved. After a couple of years of corticosteroid therapy, sarcoidosis appears to have re-emerged, much like a mole in need of a good whacking, in my joints. My doctors speculated that my speen and my liver are also currently implicated. It feels as if I make the mistake of blinking — or dropping a milligram or two of prednisone in my daily regimen — my sarcoidosis will pop up in a new organ, with a panapoly of new symptoms. To make matters worse, my medication mallets are soft and spongy, and the sarcoidosis mole is particularly tenacious.

In Billings, I saw a gastroenterologist about the intense abdominal pain and other weird problems (like vomiting blood) I’ve been experiencing. He didn’t have much of an opinion about my spleen, though he was concerned that I have issues in my esophagus and bowels.  So on Friday, I get the pleasure of returning to Billings and having both a colonoscopy and an endoscopy (in other words, a tube jammed up one opening and down another) performed in one fun-filled morning. You can’t imagine how thrilled I am at this prospect, especially when he theorized that I might have a fungus growing in my esophagus (caused by long-term prednisone use).

The rheumatologist, who I was sent to see because of painful inflammation in my joints, was convinced the root cause of this new and almost crippling development, was sarcoidosis. She wanted to immediately start me on methotrexate, typically the second course of treatment for the disease after prednisone fails to do the job. So far, I’ve resisted methotrexate because it’s a fairly toxic drug — one that is used in chemotherapy, in fact — with some nasty side effects. But the side effects seem much less worrisome now that I’m struggling to go up and down the stairs, hold a pen, or even open up a cannister of Play-Doh for my son. Plus the “safe” treatment of prednisone not only has left me fat, moody, and with thinned bones, but also seems ineffective once I drop below a whopping 15 mg./day of the stuff. Just as my husband Jay and I had decided that perhaps this rheumatologist was right, and it was time to try something new and that I should start the methotrexate, the rheumatologist came running into the exam room, flapping my latest lab results around like a revolutionary with a new flag, to let us know that my liver is really really messed up and there is no way I can take methotrexate because it impacts the liver and causes problems even for people with perfectly healthy livers.

My internist in Helena and my sarcoidosis specialist in Philadelphia concurred that my liver levels, which continue to worsen every two weeks, are “problematic” in the words of one, and “troubling” in the words of the other, and that I should get a liver biopsy ASAP to make sure it’s “just” sarcoidosis in my liver. In the Whac-A-Mole version of the disease that I have, my liver was implicated a couple of months ago, but was then forgotten in the flurry of new disease activity elsewhere in my body. Now, though, it’s apparently time to position the mallet over my liver and clobber whatever comes out. If the biopsy shows only sarcoidosis, I can likely start the methotrexate anyway, under the assumption that even though the drug is toxic to my liver, it will be wiping out the disease that is weakening my liver.  We must destroy the village in order to save it.  Or save it in order to destroy it.  Or something.
Unlike the arcade version of Whac-A-Mole, the one I’m stuck playing doesn’t end with a chiming of the bell. This is for the long-haul. I need to calm down, take the mallet in hand, and trust that my numerous doctors will figure this out. Nevertheless, Ive been having problems sleeping at night, and not just because my hands and feet are killing me. In the silence of the darkened bedroom, I can almost hear the disease inside me digging its way from organ to organ. I have no choice but to fight this illness on its terms. I can’t tell it to stop being unreasonable and flitting around. If it wants to turn this into a perverse version of Whac-A-Mole, then mole whacking I shall go. But where — and when — does this end if there’s no buzzer?

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Burying the Lead

January 9, 2007 at 1:12 pm (Uncategorized)

My friend Eric, who is a first-class journalist and buddy, used to accuse me of burying the lead in our conversations. He’d give me a call from Hong Kong or Singapore or L.A. or from across town, and we’d chat for a while about anything and everything — politics, weather, our respective love lives — before I’d tell him my big news, like falling in love, or getting engaged, or becoming pregnant. “Stop burying the lead,” he’d tell me, chastising me for a sloppy journalistic practice in which the most important part of a story is lost in a sea of lesser earlier details. After reading my latest blog entry, I’ve gotten more than a few phone calls and e-mails accusing me of once again burying the lead. “All that talk about vomit, and then you just drop that you had to go to the emergency room at the end.”

Yes – I did bury the lead. Because really, there’s just not that much to say about a trip to the emergency room, in which the physicians confirm that 1.) you feel really crappy; 2.) you have a really crappy disease that affects significant portions of your body; and 3.) there’s not much they can do except either a.) run countless expensive tests to rule out other diseases and conditions and prove that you simply have said crappy disease; and/or b.) give you a shot or two of potent pain medicine and send you on your way with a sad shake of their doctorly heads and referrals to other doctors who specialize in the organs of your body affected by the crappy disease who will i.) run additional expensive tests to rule out even more exotic and rare conditions; ii.) confirm you have a crappy disease and iii.) shake their doctorly heads and send you on your way without even a shot of a potent pain medicine.  That was my ER visit last Friday. Tomorrow I need to undergo phase two of the process and drive to Billings at the crack of dawn to see both a gastroenterologist about my spleen and a rheumatologist about my painful joints.

My time in the emergency room wasn’t useless, though, because it did lead me to ponder several important issues. The first involves the pain medicine that they injected directly into my veins. I forget what it was called — only that it was some synthetic form of morphine. Not only did it take away my pain, but it also made me feel immensely better about the state of the universe and my place in it. Immensely better. This makes me wonder why they don’t just give synthetic morphine to all the depressed sufferers of chronic illness. It would take the edge off things on a daily basis, as well as providing a significant head rush.

I also spent some time, after the whopping shot of narcotics loosened the stranglehold of pain in my guts and nicely blurred the hard lines of reality, about the aesthetics — or complete lack thereof — of the medical care I receive, as compared to what I’ve witnessed elsewhere. I’m no stranger to the medical drama on network television. I used to watch ER before it somehow degenerated into a form lower than a soap opera, beneath even Melrose Place in the annals of bad television; I’ve caught a couple episodes of Grey’s Anatomy; and, if you’re a stalwart reader of Chronic Town, you’ll remember that I’m a big fan of House because it dwells on obscure illnesses, frequently mentions sarcoidosis, and can easily serve as a forum for a drinking game in our house. Here’s the thing: my doctors, with the exception of a disturbingly beautiful and nice neurologist I saw in Denver a couple of years ago, look nothing like the hotties on TV. My own version of ER on Friday was populated by folks who weren’t hideous to behold, but certainly weren’t up to the snuff of the the surf-boy charm of Dr. Chase or the fresh-faced and beguiling allure of the almost adolescent-appearing Dr. Cameron, or even the scruffy, but nevertheless Byronic, appeal of the eponymous Dr. House on House. It became perfectly clear to me, as the pain medication surged through my veins just as surely as Dr.Chase must slide through the tropical waters in his native Australia, that what I — and American medicine in general — need(s) is affirmative action for the beautiful. Enough of these ugly smart people, like my gnome of a former cardiologist in Denver. Give me some eye candy! Now! Along with another shot of the good stuff!

I’m sure that astute readers will notice that I’m doing an awful lot digressing, and that perhaps my descent into pop culture isn’t actually a clever literary device meant to mirror the decline of ER, but is instead just another way of burying the lead. Maybe. I’m nervous about see the doctors tomorrow, especially since my internist here told me that, “as a worst case scenario, you’d lose your spleen” if the inflammation continues to worsen. Lose my spleen?  No wonder I’m focusing on the golden locks of the imaginary Dr. Chase and not the cold face of life as it really is.  Plus, with my gall bladder having been taken out last March, I’m running out of non-essential organs.

I don’t mean to bury the lead. It just sort of happens. Perhaps it’s part of coping with life in chronic town. Think first of something silly before brooding about losing an organ. That’s a good motto. Of course, if I lost an organ, they’d probably give me several shots of that synthetic morphine. And then everyone would look a little more like Dr. Chase.

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Barf Boy

January 8, 2007 at 1:28 pm (Uncategorized)

“There are two kind of children,” one of my two older brothers told me when Andrew was just an infant. “Good pukers and bad pukers.” He went on to elaborate that good pukers, when they wake up in the middle of the night with a stomach flu or a mild case of food poisoning, will head to the bathroom, find the toilet, and puke until they’re finished. Bad pukers, on the other hand, fight the act of vomiting. They stall, they try to make the urge go away, they complain about the entire process. As a result, they end up barfing on your bed, or in a hallway, or in front of the toilet. They’ll keep you up for most of the night, prolonging the whole ordeal of being sick. “Let’s hope Andrew is a good puker,” my brother Larry said, with all the wisdom that having three children can bring.

I let his warning wash over me. “Hah. Hah,” I said, feeling vaguely uncomfortable that, like most other veteran parents, my brother seemed far too comfortable talking about barf and other bodily functions like poop and pee and lactation. Yuck. I would certainly never discuss Andrew’s puking – good or bad. In fact, I was pretty sure my sweet little boy would never puke. Right?

Hah. Hah.

Andrew just turned three, but I can assure you that we know what kind of puker he is. A bad one. For the past two nights, for instance, Andrew has awakened in the middle of the night, making the sort of sounds a cat does when it is working out a hairball. He denies needing to vomit, though, and refuses to go into the bathroom or put his head over a pot. He insists on being cuddled in our bed. Once his head hits our pillows, he promptly begins barfing. He only gets a little bit out before he tries to stop the whole ordeal by swallowing his vomit back down. Double yuck. (As a good puker, I can not convey exactly how much this bothers me.) “I don’t like this,” he squeals, as more barf comes out. Since he refuses to put his head over any kind of receptacle, we have to have him throw up into a towel. Being Andrew, not just any towel will do. He wants a particular green hand towel to catch his barf. In case you’ve ever wondered how much puke the average hand towel can absorb, let me assure you, it’s not much. Which means that in addition to stripping the bedding at 3AM, we also get to change three sets of puke-soaked pajamas. In the middle of his next round of vomiting – when he’s actually mid-puke – Andrew demands a drink of water to “wash the taste” out of his mouth.

“What a lot of disgusting details,” I can hear you thinking. “I’m not sure I want to read this blog anymore. It’s supposed to be about sarcoidosis and motherhood, but she’s spending far too much time on hand towels and puke.” Here’s the point. Right now, I want my life to be about hand towels and puke. I am the mother of a pre-schooler, and this is supposed to be the terrain – stomach flu and whether my kid can make it to the toilet in time; how many letters he can recognize in the alphabet; the degree of potty training his achieved; his fine motor skills; what kind of cake to bake for his third birthday party this weekend.

Unfortunately, when I am in the throes of a chronic disease that seems intent on manifesting itself acutely, I forget that Andrew and his puke style are my priority. Instead, I run the risk of turning his life into a subset of mine. Take this weekend. On Friday, I had to go to the emergency room because I was vomiting blood and was having intense abdominal pain. It turns out that having an enlarged spleen can cause a heck of a lot of pain and puking (which, I can assure you, I did not fight). Since the sarcoidosis is causing my spleen to get bigger, there’s not much to do except wait for the higher dose of prednisone to knock out the sarcoidosis. Come Saturday night, though, when Andrew developed this flu, I was exhausted, and the last thing I wanted was to have a feverish little boy upchucking in my bed. “Why is all this crap happening to me?” I caught myself thinking, as I held the trusty green hand towel in front of Andrew’s mouth and winced from the pain in my own gut.

“This” isn’t happening to me. I have chronic and multi-systemic sarcoidosis. But the travails of my son should not become fodder for my own personal pity party. He gets sick – badly, I might add – but Saturday night was about him, not me. If I’m not careful, he’ll grow up with my illness consuming the air he needs. He’ll worry that every time he gets the flu, it’s contributing to my great snowball of woe. And that will not do.

So I caught myself and returned to the here and now, to the sick little fellow in my lap, fighting his sickness with every fiber of his body. That I admire. He’s not such a bad puker, after all. Well, maybe he could aim for a bucket.

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Have Yourself a Merry Little…Nightlight

January 4, 2007 at 1:53 pm (Uncategorized)

Andrew’s been opening a lot of presents lately.

Since Jay and I have an inter-faith relationship, Andrew gets to reap the rewards of both Jewish and Christian holidays. Hanukkah started on December 15, and for most of the eight nights, he had a new gift to unwrap, or in the case of the basketball hoop from his Grandma in Boston, to go downstairs and marvel at. Then came Christmas. He got his wish from Santa Claus — a tyke-sized snow shovel (exactly how much will he enjoy shoveling snow when he’s required to do so as a teenager?) and a Christmas tree of his own in his room. On New Year’s Eve, he turned three, and my sister and mother created a Caterpillar-themed birthday party (that’s the heavy equipment company not the arthropod), complete with a cake designed to look like a construction site and gifts such as a large functional excavator (equipped with beeping and flashing lights), miniature compacters, and assorted other mechanized wonders. Next week we’ll have a party here at home so that he can share his birthday with his local friends. Then he’ll be able to open the stylish new tricycle from his Grandma in Boston and his airplane pedal car (with a propeller that spins with each pedal stroke) from my brothers and sister.

Jay and I expected that after all the loot he received, Andrew would be a little monster until spring. We assumed that three straight weeks of gift-getting would condition him to expect hundreds of dollars of toys every few days. I spent a lot of time before the holidays brooding about what kind of message we were sending our son.

We shouldn’t have worried. Andrew seemed to learn from Hanukkah, Christmas, and his birthday the joys of giving, not getting. For the past couple of nights, he has distributed imaginary presents to Jay and me and some of his stuffed animals from a pile of “millions” of gifts he has created in his mind. “Open this,” he’ll tell me, cradling his hands as if he’s holding a box. “But, it’ll take some time,” he adds, “because it’s very, very, very well-taped.” I’ll pretend to open a gift and pull something out of box and then ask him, “What is it?” “It’s your very own thermometer,” he’ll say. He gave his father his “very own night light,” and his stuffed dog received his “very own space shuttle,” which Andrew said was waiting for him at the airport.

Leaving aside my jealousy that the plush dog got the coolest gift, Andrew’s generosity of spirit brings tears to my eyes. I haven’t been feeling well lately. My inflamed joints make it hard for me to get around the house, and I’m catching yet another cold. It’s easy for me to dwell on everything that’s wrong in my life — being sick, needing to take more prednisone, and feeling incapacitated. But Andrew makes it impossible to stay in this dark place when he’s around. “I want to tell you something, Mommy,” he said this morning. “What?” I asked. “I love you very much,” he answered and gave me a hug that took my breath away with its ferocity. I’m not sure that Andrew realizes how much goodness he brings to us. But I’ll never forget. Plus, with his Dad’s very own night light, we won’t lose our way in the darkness that surrounds us.

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Alternate Reality

January 3, 2007 at 2:03 pm (Uncategorized)

In case you haven’t noticed, I’ve been avoiding writing. I’ve also been hiding from phone calls and holiday good wishes. The people who know me the best, and who worry about me the most, are the ones I send the most quickly to voice mail when my phone rings. I plan on calling them back later, but somehow just never get around to it.

I’ve been hiding from my life, or, more specifically, from the telling of it. To be fair to myself, I’ve done an acceptable job of handling my responsibilities as a mother to my son, Andrew, and a partner to my husband, Jay. Probably this is because they don’t ask me the single question that makes me want to stick my head in an oven or hide under my bed until the next new year rolls around. Three simple words have converted me into a hermit: “How are you?”

Answering that question, which is asked with nothing but kindness and the best of intentions, means that I either need to confront the new terrain of my life and illness and explain the dramatic downturn that has flattened me, or else blandly lie and tell everyone I’m just fine – and to have a happy new year. Either option ultimately involves coming to terms with a reality I simply don’t want to accept.

I’m out of remission, if there is such a thing in the grey scale land of sarcoidosis. The flurry of testing the doctors performed in December revealed a “significantly enlarged spleen” and arthritis. As best as I can understand, the experts believe the disease is hop-scotching through my organs. Whether or not it has returned to my heart is anyone’s guess. I’d need to have a cardiac MRI performed to answer that question. But the doctors simply ordered me to increase my prednisone without waiting for additional testing. I never got below 10 mg. of prednisone a day.

I know the situation could be far more depressing than it is. After all, there are many worse things to have than inflamed joints and an overweening spleen. I’m still walking (albeit gingerly on my sore feet) and talking (when I’m not hiding from my friends) and writing (when I’m not avoiding the page and my achy fingers). I think what got damaged the most in my rapid return to the land of the chronically ill wasn’t my internal organs or my bulbous hands but my pride and my sense of myself.

Like everyone else in the country, I’ve been narratively conditioned by movies and television shows. I’m not trying to speak nonsense here – merely explain that I have a vision of how stories should resolve themselves, and that this vision comes in part from watching dramas and romances nicely wrap themselves up in a 30, 60 or 120 minute narrative arc. Here’s how Hollywood would script my illness:

New mother and Plucky Young Woman (PYW) gets diagnosed with a frightening disease. She struggles with images of her own death and the thought of leaving her precocious toddler an orphan. Intersperse images of the PYW going to doctor’s appointments with scenes of her spunky child teaching the new mom all kinds of valuable life lessons – one of which is, you can’t control life. The PYW is put on a difficult treatment regimen that leaves her once svelte and muscular body plump and flabby; nevertheless, the PYW keeps going to the gym and persevering (play a beat-driven song with undertones of the Rocky theme with scenes of PYW sweating on the stairmaster). The PYW fights the disease with every fiber of her being, goes into remission, and is allowed to end her difficult treatment. The pounds melt off of her, her cardiovascular health returns, and she emerges from the claws of illness a better mother, a better writer, a better wife, and a more sensitive human being. Although the important take-away message of this tele-drama is that you can’t control your life, the PYW has done an admirable job of just that. As credits roll, play Destiny’s Child’s “Survivor.”

Well, that sure didn’t happen, though you can see through my blog entries how much I have tried to push myself – and my out of control illness – into these parameters. The pounds didn’t miraculously fall off my thighs. In fact, I’m not sure I lost an ounce on the lower dose of prednisone. I can’t even make it to the gym now that my hands and feet are swollen and the increased exertion makes them swell even more. My stomach and chest throb because of my spleen (or so say the experts). And in the face of my internal tele-drama, swallowing more prednisone every morning feels like a colossal failure. The only soundtrack that suits my life now is a Bach fugue or some other minor-key dirge.

What’s doubly annoying is that I had been warned that this is just what might happen. When I asked my sarcoidosis specialist in Philadelphia if she thought I was going to be one of the lucky few who have sarcoidosis involving multiple organs, undergo a course of steroid treatment, and still go into a blissful and lifelong remission, her response wasn’t just guarded. Instead she told me that “you never know, but that’s not very likely.” You’d think I’d have noticed the “chronic” in chronic illness, but I was too busy anticipating my own heroic recovery.

For the past few weeks, burying my head in the sand and reading a lot of mediocre novels has seemed like a perfectly adequate coping mechanism. But people are starting to worry about me. Hell, I’m starting to worry about me. Like it or not, this is the version of reality I have to deal with. There’s no music, and nothing wraps up neatly at the end of two hours. But I promised to write about life in chronic town, so expect me back here tomorrow. Just don’t ask me how I’m doing.

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