Message in a Bottle

March 28, 2009 at 9:28 pm (Uncategorized)

“Maybe it takes a crisis to get to know yourself. Maybe you need to get whacked hard by life before you understand what you want out of it.”

from Handle with Care by Jodi Picoult

After eight days, I am finally home from my latest hospitalization—the sixth of the year, if I’m counting correctly.

Almost every day I was in the hospital, I pecked away on an old laptop I insisted my husband Jay bring to me. I felt weirdly compelled to write something for my blog, even when I was in a lot of pain, or even when my brain was muddled by medications and by new data about my body and my disease. At first I told myself that my longing to write about my latest “health problems” was simply because I was being responsible. After I had just launched my new Web site ( and a new blog address ( with much fanfare, so it seemed I had a duty to keep my readers apprized of my ongoing medical situation. Wouldn’t it be odd to vanish just when I had stridently announced my reappearance?

Slowly, as I’ve pecked away at sentences about my latest crisis, I realized that my need to write isn’t about reassuring my readers that I’m still alive. I’m not being altruistic, keeping all of you informed. No, I want to know that I am indeed alive, so I’m sending out a message in a bottle, a primal scream that says, “I am still here.” Maybe someone else living in Chronic Town will pull this “update” from the waves and hidden currents of cyberspace and understand what the hell is happening to me. I haven’t dissolved under the pressure of sarcoidosis. I am still alive. But suddenly, I’ve been tossed onto what feels like a desert island of incomprehension. I, for one, can no longer make sense of my life, my disease, or my treatments anymore. Maybe someone else can.

What sent me to see the doctor last Monday, and what propelled him to hospitalize me, were the same issues that have plagued me since the first of the year. (I apologize in advance for being overly-explicit about bodily functions. Maybe the pain killers have lowered my inhibitions, but I can’t see another way to work through this narrative without talking about my own waste.) I continue to have gastro-intestinal problems: diarrhea that comes on so quickly and so severely that no matter how much water and Gatorade I chug, I cannot keep myself hydrated; stomach pain that leaves me wanting either to writhe in bed or to remain so utterly still, breathing shallowly and disturbing a minimal number of muscles; then, after the diarrhea pays a call, I swing to the other extreme and become so constipated that my belly looks like it did when I was pregnant with Andrew.

Although I’d had the full complement of my GI symptoms, it was pain that brought me to the doctor’s office. Before I saw him, I had spent a night without even a minute of sleep; it felt like I was being gutted. And this was while I was taking the maximum doses of both kinds of narcotic pain medication I have. Even though I had enough of these drugs in my bloodstream to anesthetize a horse, I felt like I was having abdominal surgery with nothing more than a couple of aspirin to numb me.

The doctor said I had to go into the hospital. My arguments to stay home were, truthfully, pro forma at best. I was scared—because pain of such magnitude indicates a problem of equal magnitude. What was happening to me? I was also frightened because my gut pain had mysteriously reminded my brain of its neurosarcoidosis complaints. So, not only was I staggering around holding my stomach, I simultaneously had two days of neurosarcoidosis symptoms: the searing pain I call “stroke headaches,” vertigo intense enough that I tumbled down a flight of stairs, and an inability to “find” words in conversation. Although I would have liked to write off my dizziness and stuttering as a side effect of the narcotic pain killers I swallowed in an attempt to ease my belly pain, I couldn’t. The “night of the long knives,” as I’d come to think of my sleepless vigil of stomach pain, was the end point—not the beginning—of this new set of symptoms.

I usually hate getting admitted to the hospital. I try to be stoic. I fight against the complete loss of physical autonomy that hospitalization entails. “Let me stay home,” is my typical refrain. This time, though, I simply hurt too much. It also helped that my mother was with me. She had come a few days earlier to help Jay and I make it through a lousy weekend. I had just gotten my bi-weekly dose of chemo to treat my neurosarcoidosis, so I was throwing up, exhausted, and effectively useless when it came to caring for Andrew, our five-year old son. After months of dodging our town’s infectious agents, Jay had finally caught what sounded like tuberculosis. It turned out to be bronchitis, but the doctor recommended we “quarantine” my husband from Andrew and me since I am so immune-compromised. Without my mother’s heroic ride to the rescue, Andrew would have spent three days eating pretzels and watching his Mommy dry-heave her morning medication while his dad lay sequestered in our basement, wearing a surgical mask and trying not to hack up both his lungs.

I could gauge in my mother’s eyes how awful I looked. While my own reflection in the mirror didn’t provide me much data, I could see in the dark rings encircling her eyes and the worry that made her eyes flicker almost electrically green instead of their usual sea green, that I was not well. I also knew that (despite what I’ve sometimes accused him of) my doctor doesn’t toss people into the hospital for no reason. So, in I went, and within half an hour, I was hooked up to a morphine pump and had begun eight days of testing. The only constant was the pain, which not even the morphine pump could eradicate. Of course, I also had my fear, but that waxed and waned, depending on the results of a test, and on how close to the surface I allowed my thoughts of dying and leaving Andrew and Jay.

Here’s what I learned (or, more accurately, didn’t learn) during hospitalization #6 of 2009: something is not right. For the last seven months, I have been carefully following a regimen of toxic medications theoretically to control my systemic sarcoidosis: chemotherapy (specifically, a nasty agent called Cytoxan); Remicade (an infusion medication that shuts off the inflammatory response of my immune system); prednisone (an all-purpose anti-inflammatory, immune-suppressing drug that I have taken in lesser and greater doses during the past four and a half years), and Thalidomide (another anti-inflammatory, immune-suppressant that was first used in the 1960s to treat morning sickness, ended up causing terrible birth defects, and has since found a niche in treating specific cancers, autoimmune diseases and leprosy). I saw a sarcoidosis expert only a few weeks ago and he had confirmed that my neurosarcoidosis was improving—improving so well, in fact, that he cut Thalidomide from daily repertoire of medical poisons and authorized me to start a prednisone taper once my bowels were “in order again.” He recommended six more months of chemotherapy every other week. I felt optimistic. I cold do the chemo. I swear I could smell permanent remission coming my way.

Apparently, my olfactory nerves need to be checked, along with the rest of my body. I wasn’t sniffing a cure in my near future—probably just the granulomatous cells of sarcoidosis plotting a comeback. A CT scan of my abdomen—and a subsequent echocardiogram—revealed a recurrence of my heart problems. My initial presentation of cardiac sarcoidosis was one of “conduction abnormalities” (in other words, the sarcoidosis was messing with the electrical function of my heart), as well as a thickening and loss of function in the right side of my heart. For the past three years, though, the sarcoidosis in my heart hasn’t been active. The right side of my heart stabilized; I no longer had bizarre results on EKG and cardiac MRI tests; I no longer had to listen to cardiologists speculate about whether or not to implant a defibrillator, or whether I might “drop dead” (my electrophysiologist had some bedside manner issues). While the disease had unfortunately moved on to new organs (bones and, most inconveniently, brain), at least my heart seemed fine. Now, this no longer seems true. The latest tests of my heart revealed a recurrence of my right heart problems, as well as pericardial effusion—an inflammation around the heart, which, according to the doctors, is present in nearly twenty percent of active cardiac sarcoidosis.

The many tests of my stomach and intestines came back normal, except for those that indicated the odd inability of my body to absorb certain fat-soluble vitamins. The doctors worked hard to rule out various gastro-intestinal ailments. While it’s very good to know that I don’t have colon cancer or a dysfunctional small intestine or Crohn’s disease, the results propelled all the doctors, including the sarcoidosis expert, to speculate that I now have active sarcoidosis of the GI system. Biopsy, which is the gold standard of sarcoid diagnosis, is a tough task when you think of the dozens of feet of intestines we all have. What are the odds of grabbing a microscopic chunk of granuloma from twelve feet of colon? Often, I learned, GI sarcoidosis is a “diagnosis of exclusion.” In keeping with this strategy, the doctors ruled out other problems and then bombed my system with 120 mg. of intravenous prednisone. If I felt better with the prednisone, the odds were that I had active sarcoidosis in my guts. I didn’t know whether to hope to feel better on the prednisone or not. It would be good to be out of pain, but what did it mean that the disease was present while I was taking so many drugs to eradicate it? It turned out that within a day of receiving the high dose of IV prednisone, I began to feel better—not well, but a slight easing in my guts.

What does this mean? Is it possible that the chemotherapy I have been suffering through is able to control the sarcoidosis in my brain and nerves, but is not able to keep the disease in check in my heart, GI system, or other organs? Can anyone answer this question, or does my weird form of this weird illness mean that I am living in a land far beyond the data they have available for the disease? Where do I go from here? What should I be doing for my heart? For my stomach? For my brain? Who can help me understand this? How will I stay alive if, while I was getting the equivalent of an atomic bomb for the disease (in terms of chemo and three other toxic, immune-suppressing agents), it was able to pop up in my heart—again.

Both the local doctors and the sarcoidosis expert recommended that I travel to the Mayo Clinic so that I can get thoroughly vetted by top-notch cardiologists, gastroenterologists, and whatever other -ologists I need. The sarcoidosis guru said not to come to his hospital because it is a teaching facility and rather than getting a brilliant specialist to care for me, I’d simply have the “resident of the day” attending to me. Jay and I agreed to go to Mayo. We have agreed to everything. What else can we do? We want me to stay alive, with this disease in a minimum number of vital organs. We want me to stop spending more time in the hospital than out of it.

Truthfully, Jay and I don’t talk much the latest news. I haven’t even felt compelled to type my latest right heart ejection fraction into google and horrify myself with the possible results. I’ve told Jay that I’m scared, that I feel hopeless, that I don’t know if anyone can help me. He has nodded in agreement and held me. Beyond that, there’s not much else to say. It is better to do puzzles with Andrew, plan tomorrow’s dinner, and talk about the book I recommended he read. I’m not in denial, per say. I just don’t know what else to do.

I do know that I am in the midst of another crisis. As the Jodi Picoult quotation at the top of this entry suggests, such events are learning opportunities. I am, honestly, afraid for my life—and I’m pretty sure I’m not being melodramatic about interpreting the latest medical information to this conclusion. It is awful to feel this way. It is lonely and crazy-making, but it does clear my vision. Like a woman washed ashore from a shipwreck, I can gaze at the horizon from my island and see very far. I can see what is important. I am giving up on being cured. I just want to be here. With Andrew and Jay. If you find my bottle with my message, cast it back into the sea—not so that the right doctor will see it bobbing in the waves and send a boat to my rescue—but so that the world will know, my son will know, I am here.

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Tummy Talk

March 8, 2009 at 10:37 pm (Uncategorized)

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

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

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

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

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

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

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

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

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

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