Chronic Town

In my last entry to this blog, I promised myself and my readers that I would be showing up here in Chronic Town more regularly. I’ve certainly stretched the limits of what “regularly” means, haven’t I? If it counts for anything, though, I have thought about finishing and posting this essay I started back in 2009 nearly every day.

Part of what has kept me in limbo is health-related. The multi-tentacled monster that is sarcoidosis has risen up a few times since Thanksgiving and lashed me from literally top to toe. I’ve had a recurrence of neurosarcoidosis, along with new broken bones in my foot from osteosarcoidosis.

Another reason for my absence has been my need to complete this particular essay. I’ve had dozens of ideas for easier and timelier pieces that I could have posted in order to keep my promise of showing up to my own blog. But the weight of this unfinished behemoth—which I began the day after I posted my last entry—has kept me from doing any other writing.

This essay started as a simple answer to an e-mail I got from a reader who wanted to know what had happened in the months I’d been away from the blog. She was curious and concerned about my last visit to the sarcoidosis specialist in Cincinnati. Was I able to reduce the amount of chemotherapy or prednisone? She asked about Andrew, my now six-year old, and my husband Jay.

I began what I thought would be an uncomplicated review of a year with sarcoidosis. My reader was right that I needed to fill in the gaps. I had vanished from cyberspace in the midst of one health crisis. Sure, I had returned with a strong statement to stay connected in the future. But what had happened to keep me away from the computer for so long?

I had thought my chronicle of the year would fly from my mind to my fingers and onto the page. Not much had happened that deserved recording, I thought, as I prepared to crank out what I expected would be at most a page or two of narrative. Being sick meant that we hadn’t traveled to the other side of the world, as we had when Andrew was two and we visited friends in Thailand. Being sick meant that I hadn’t taken up new hobbies, made many new friends, or even volunteered in Andrew’s kindergarten class. Since all I had to do was write about being sick, seeing doctors, going to the hospital, getting treatment, and getting sick from the treatment, I thought I could complete this necessary “bridge” essay to fill in the gaps and then move on to writing about the present.

I immediately bogged down in my simple record. For each event, I wrote three paragraphs, and then three pages. As the essay grew longer and longer, I told myself that I was providing “context” for my readers. But my clammy hands, pounding heart, and bouts of crying as I typed made me realize that I wasn’t over-writing for my readers. I was trying to make sense of the year for my own sake. In order to write, I had first to reflect on and rethink the events I had simply survived. To get through a year of chemotherapy, invasive medical tests–like a colonoscopy without any anesthetic–and periods of blinding pain, I had gritted my teeth and deliberately not reflected on the experience. As Charles Todd writes in A Pale Horse, “we’re too busy living to understand our lives.” But the writing process forced me out of this swirl of busy-ness and to try to extract meaning from chaotic memories. It made me sift through the file of experiences I had lumped together under the label “illness” and placed in the back of my brain. I found that this jumble of experience could be sorted into a narrative, of sorts. It hadn’t been a year mostly “lost” to sarcoidosis, after all. I had experienced a great deal. I had traveled far, too, even though I hadn’t flow to exotic lands. I was moving towards living beyond concepts that had caused me some harm. As I wrote, I saw that the past year had brought me to a place where I was less preoccupied in whether I was getting healthier or sicker. Instead, I spent more time in the moment in which I lived, and less time careening between giddiness that I was getting cured and despair that I would soon be dead from sarcoidosis.

I chose not to edit this essay down to size, not to whittle away the bulk of my words and present to you a tidy and thematically-coherent account. My decision is partly because I want to be done with this piece that has kept me from other work. But I also want you to see—and me to see—the unvarnished outpouring of words—the back alleys of memory and the knots of buried worries— that brought me to discover meaning in a year spent in Chronic Town.

My year began like a New Year’s resolution run amok. On January 1, 2009, I was hospitalized for the first of many times for gastrointestinal issues. I’ve written about this experience in earlier posts to my blog. But only now can I see how beginning the year flat on my back, hooked up to bags and bottles of various medicines and fluids, was a perverse inversion—or, more precisely, a medical re-imagining— of the stereotypical New Years. I wasn’t throwing up or suffering from a hangover brought on by too much celebrating the day before, but from some undetermined intestinal issue that may or may not have been related to my chronic, systemic sarcoidosis. I had always rung in previous years with resolutions to improve myself by losing ten pounds, reading more books, or keeping a cleaner house. A crisis always clears the mind, though, and makes you see what is important. I only wanted to stabilize enough to go home and be with Jay and Andrew, whose fifth birthday I had missed because I was in the hospital. I would get my wish and return home, only to have to the same thing happen all over again—terrible stomach pain and multi-day long bouts of diarrhea that kept me tethered to the house. No matter how many gallons of water and Gatorade I swallowed, I became severely dehydrated. Back to the hospital I would go for a few more days with the bags and bottles.

The only way I could get through this difficult time was to go numb. From what I remember from my one and only college psychology class, the emotional deadening that follows shocks of both the physical and the psychological variety is a normal response that allows us to get through car crashes, divorces, and, yes, chronic illnesses. It has taken time and distance from these months to even acknowledge that I was in shock. I didn’t have reference points to fully understand how brutal this time was. After I was in a roll-over car accident a few years ago, I was able to cut myself some slack when I later felt panicked about driving down the road where the accident occurred. But as with so many other aspects of chronic illness, I was impatient with myself for not bouncing back emotionally and physically from each hospitalization. Whether or not my coping mechanism was healthy or normal, I can’t say. It is simply what I did. I don’t think I could have endured the number of invasive gastrointestinal exams I did if I had been psychologically “present” or “in the moment.” Nor could I have stomached (pun unintentional) the uncertainty of those months when every unpleasant medical procedure indicated the same nebulous result—something was wrong with my gastrointestinal tract; the team of White Coats could not determine where the problem was, what was causing it, or how to fix it—if I was tuned in to my emotions.

But the real source of my numbness—the reason I stuck a giant syringe of Novocain into my soul—was because of Andrew. I couldn’t stand how upsetting my illness was for him. I was diagnosed with sarcoidosis when he was only three months old. Ever since that first surgery—a mediastinoscopy to biopsy my inflamed pulmonary lymph nodes—the disease has been a constant presence in his life, so much so that it is almost like having another member in our family. It isn’t quite like having another child, or one of our parents with us. Rather, my sarcoidosis is more like having had a senile aunt move unexpectedly into our home and our lives. We didn’t know much about her before we were forced to take her in, but we had no choice. As much as we try to manage her or move her to a nursing home, this unwanted family member has some unspoken but very real power over us. She is intent on staying. Although she lurks in shadows and corners and hovers over us when we sleep, we can’t draw her out and learn why she is with us.

Jay and I have tried to keep Andrew from worrying about worst-case scenarios with my sarcoidosis. For instance, when we’re around him, we don’t talk about the possibility that I might have a heart attack from the disease’s cardiac manifestation, or that the neurological symptoms the chemotherapy I’m getting to curb might worsen, causing me to have seizures, a stroke, or wind up in a wheelchair. We don’t talk about these calamitous potentialities with each other either for much the same reason. Why worry about what is really only speculation? But we also don’t want to outright lie to Andrew about my disease. He’s a smart kid. If we wanted to keep him from knowing about my disease, we would have to lie to him constantly to account for my trips to see doctors, my days stuck in bed either because chemotherapy leaves me nauseated and exhausted or because my neurological problems flare and I’m unable to walk because of vertigo. After five years of careening between relatively stable periods—when I can put him to bed every other night, read him books, and accompany Andrew and his Dad to a soccer game—and the relatively horrible times when I’m in the hospital or stuck in bed, unable to participate in the daily events of family life—I’m pretty sure even the cat knows something is amiss.

Striking this balance between being truthful and not being dire often feels impossible, especially since the treatments that curb the disease’s progression have grown more consuming of my time and energy. As much as we’d like to shield Andrew from the chemotherapy I’m getting, it’s impossible to keep him from seeing how sick the treatments leave me. And though we would have liked to spare him from worrying about me being in the hospital, this too was impossible–as became too clear for me when, on a sunless February afternoon, I told him I had to go back into the hospital. I watched his small face crumple as if the bones that shored up his features had lost their structural integrity. And then, when I was able to come back home a few days later, he hid his hurt and fear and only showed me the hardened mask his face had become. For several days, he ignored me. I tried to play with him, and he turned his back. I tried every way I could think of to get him to talk about feeling sad, mad, or glad about my sickness, and he laughed mirthlessly and told me nothing bothered him. I was too exhausted to plant myself on the floor and build with his Legos until I wore him down and his curiosity got the better of him and he would want to know what I was making. Instead, I retreated to my bed, where I numbly listened to an audio book until sleep—and true oblivion—claimed me.

No matter how many times I told myself, no matter how often Jay, my parents, my friends, and my therapist told me firmly and convincingly that Andrew was going to be just fine, that none of this was my fault, and that beating myself up for being ill wasn’t helping, I couldn’t stop. I couldn’t stop hating myself for causing so much pain to this small person I loved so fiercely and wanted to protect from getting a splinter, much less from having to worry about me. I couldn’t stop blaming myself for getting sick in the first place, and then for letting the sickness spread. What had I done to bring on the sarcoidosis? What hadn’t I done to prevent it from moving into my heart and head? I couldn’t stop fretting over my decision to get the year’s worth of every-other week chemotherapy to stop the sarcoidosis’ rampage in my brain. I couldn’t stop berating myself for feeling so awful after the chemotherapy. Wasn’t I tougher than I acted—vomiting and then taking to my bed after each dose? Why couldn’t I shake off the surging nausea and go to Andrew’s soccer practice, instead of sleeping for eighteen or twenty hours at a stretch? I couldn’t stop blaming myself for all the crises and hospitalizations brought on by my so far undiagnosed gastrointestinal problems. Why couldn’t I keep myself out of the hospital? Couldn’t I just drink another gallon of Gatorade and pop another handful of Imodium and weather out the storm in my guts? Why couldn’t I, why didn’t I, what was wrong with me? It was like my brain had tuned into an AM radio station that was all talk, all hate Rebecca, all the time. I couldn’t change the programming or move to another station, so I simply tuned out.

Overwhelmed by what was going on in my body and beaten down by the unending vicious chatter in my head, I went numb. I still wasn’t able to read much because of my neurosarcoidosis. Although my vertigo was improving, reading too often triggered it. For whatever reason, scanning the words on a page or two left me feeling motion sick. A few lines of a novel weren’t worth spending the rest of the day with the sensation of being on a small craft in stormy seas. Jay’s father had the brilliant idea of audio books, and then gave me carte blanche access to his audible.com account. I owe my sanity to him. I spent a lot of time listening to books on my iPod. When one book ended, I didn’t pause to reflect on what I’d heard, but moved on automatically to the next one. If I wasn’t engrossed in a story about someone else’s life, I slept. I studiously avoided friends’ phone calls, hating having to try to answer the question “How are you?” no matter how kindly it was asked, no matter how good the intentions behind the asking. I didn’t want to explain my latest hospitalization or my worries about my son, and I couldn’t fool people like Martha, Molly, or Jan with a scant “Fine.” My sense of isolation brought on by dodging calls was compounded by the reality of actually being alone much of the time. The White Coats had told me time and again how seriously compromised my immune system was. I was supposed to avoid crowds, anyone who was sick, and anyone who had been exposed to anyone who was sick—which means basically all of humanity when you stop and think about it. I couldn’t meet friends for lunch or coffee (crowds), visit Jay at work (crowds), and since most of my friends have children, and since children seem to exist in a continual state of snotty noses, it meant that most of my friends had been exposed to illness and so were verboten as well. I couldn’t drive. Even if my vertigo had miraculously disappeared, my stomach hurt so badly that I was taking a hefty dose of narcotic pain medication which would have made me a danger behind the wheel. So I relied on rides from caregivers we employed, from Jay, or from friends. Andrew was often along in the car since he couldn’t be left home alone. So I made sure to wave cheerily no matter where I was going. Mostly I just shuttled to doctor’s appointment and chemo infusions—the Chronic Town version of a commute, I guess. But sometimes I’d get the exciting opportunity to go to the hospital for extra fluids or for a colonoscopy. No wonder I made myself so numb. If I had let much emotion wash over me, I would have been carried away by a tidal wave of grief.

I was capable of tuning in enough to try and make sense of my recurring gastrointestinal issues, though. After both my local doctors and my sarcoidosis specialist recommended I go to the Mayo Clinic, Jay and I went to Minnesota, carrying with us a small suitcase filled with my medical records. We wanted answers as to why I kept having these awful bouts of pain and diarrhea. I wrote about the results of the many tests the various Mayo White Coats ordered to determine if my gut problems were caused by sarcoidosis. It was good news that I posted to this blog after we concluded our trip to Mayo. The doctors didn’t find any evidence of active gastrointestinal sarcoidosis as the cause of all my recent woes. The cardiologist, endocrinologist, and oncologist also found that the disease wasn’t active in my heart, as it had been two years’ earlier, and that the inflammation in my brain stem and pituitary gland had decreased—probably because of the rigorous treatment plan I’d been following: infusions of Cytoxan (a chemotherapy agent) every other week; infusions of Remicade (another immune suppressant) every month; Thalidomide pills (the drug that once caused birth defects, but is now used to treat various cancers and autoimmune diseases–oh, and leprosy), and prednisone (a corticosteroid that both reduces inflammation and suppresses the immune system). Even though my stomach was still a mess, I felt hopeful. Maybe the Mayo doctors were right, and all my gastrointestinal problems were caused by the combination of all these sarc-busting—but also gut-busting powerful and toxic—drugs. Maybe I could learn to eat in a way that was gentler on my worn out innards. Even though it would have been neater from a diagnostic standpoint if the GI problems were sarcoidosis, I was damn happy to learn that it looked like the toxic cocktail of drugs had stopped the disease from spreading.

I came home from my week at Mayo almost ebullient. I did a flurry of research and reading about irritable bowel syndrome. I met with our local naturopath and started on a costly regimen of supplements to counteract the damage done by all my medications. After eliminating raw fruit, raw vegetables, dairy products, and a host of other foods, my GI problems seemed to be improving. I only had one more hospital stay. With the Mayo doctors’ assurances that my heart and intestines looked disease-free and that my brain was headed in that direction, I consciously decided to hope, to believe that I was on my way to remission, that if I jumped through the fiery hoops of a year of chemo, I would emerge out the other side—disease-free. I could weather the stomach problems. I could fiddle with my diet, gulp down probiotic capsules for my tummy, and make it through the next six months of chemo. No matter that I had to plan my outings with proximity to toilet facilities in my mind. No matter that I had a big box of adult diapers to wear if I needed to venture beyond bathroom range. No matter that every session of the chemo that I believed would save me left me sicker and more exhausted. The effects of Cytoxan are cumulative. There is only so much of the poison a body can take—your lifetime dose—because some if remains behind after every infusion.

To choose such deliberate optimism, I had to suppress the vagueness that accompanies my disease. When it comes to sarcoidosis there simply are no black and white answers. I had once believed that all medicine was akin to diagnosing and treating strep throat: feel terrible, go to the doctor, have her swab my throat, wait for the swab to be cultured at a lab, if it showed streptococcus she’d prescribe some antibiotic like tetracycline or Cipro, and voila, in a couple of days, I’d be as good as new. I had once thought tests like the strep culture gave definitive answers, that an x-ray would show if a bone was broken, that an MRI would reveal cancer. I had once thought that either you had something or you didn’t. And if you did, the doctors could and would discover its presence with some high-tech test. Then they would fix it. After the harrowing winter when doctors thought I might have sarcoidosis in my gastrointestinal tract or I might have Crohn’s disease since autoimmune diseases often travel in pairs, and then conducted a flurry of tests that showed mysterious inflammation but could not name it, I should have known better. After all, I had gone through five years in the medical grey zone. Even diagnosing sarcoidosis is fuzzy. Settling on it as a diagnosis is often a process of eliminating other diseases. In fact, I was lucky that a pulmonologist had thought to biopsy the enlarged lymph nodes in my chest and spot the granulomae that are sarcoidosis’ calling card. But determining that it was sarcoidosis—and not some other condition—in my heart and brain wasn’t clear-cut at all. Rather than risk performing a biopsy on either my heart or my brain, the White Coats performed every imaginable test to rule out other conditions that could be causing my problems. I remember one heart test in which I was strapped to what looked suspiciously like a padded crucifix and then hung upside down for intervals. The test wasn’t painful—just uncomfortable and weird. I forget what cardiac condition this mock crucifixion ruled out. But this test and a dozen others left the specialists “fairly sure” that my arrhythmias, my right heart enlargement, my right AV block, and my bundle branch block were all due to sarcoidosis in my heart. However, there wasn’t a test for cardiac sarcoidosis—just dozens of tests for other heart problems. If I didn’t have any of these, then it was more likely I had cardiac sarcoidosis. And if the doctors had wanted the “gold standard” of diagnosis and had biopsied one of the “suspicious areas” in my heart to find the tell-tale granulomae, the odds were against them actually striking pay dirt, even if my heart was riddled with them. The “positive yield” (meaning actually finding tissue with sarcoidosis) in cardiac biopsies is notoriously low—around 40 percent. So even a “negative” cardiac biopsy didn’t disprove anything.

Settling on a treatment course is just as nebulous as naming the disease. There is shockingly little evidence to back up the efficacy of the drugs used to treat sarcoidosis—even good old prednisone, the “first line of defense” in many auto-immune diseases. In fact, along with the studies that show that prednisone suppresses sarcoidosis, there is also data that indicates that patients who take prednisone in early stages of the disease—when the granulomae are confined to the lungs and the disease might spontaneously remit (as seventy percent of sarcoidosis cases do) are more likely than patients who didn’t take prednisone to develop a chronic, systemic form of the illness. Whether the prednisone actually causes the disease to become systemic or whether it’s just that the White Coats administer prednisone to people (like me) who show signs of having the disease in multiple organs is just another of the unanswered questions that stalk my disease. There’s the matter of why some forms of TNF inhibitors work and others don’t. Why does Remicade help fight systemic sarcoidosis and Humira doesn’t as well? (TNF, or tumor necrosis factor, induces inflammation as an immune response. TNF regulation gone awry is thought to play a part in some autoimmune diseases like rheumatoid arthritis, psoriasis, Crohn’s disease, and sarcoidosis—all of which have inflammatory issues gone awry as their MO.) There’s the oddity that some treatments for sarcoidosis work well on some organs and do nothing for others. Why is it that Hydroxychloroquine, a malaria drug, helps eliminate sarcoidosis’ disfiguring skin lesions, but leaves neurosarcoidosis untouched? Or why do chemotherapy agents such as the Cytoxan I get, help neurosarcoidosis but don’t do much for ocular sarcoidosis? Medical researchers are trying to answer these questions, along with dozens of others. But they are stymied by a lack of data. The more lethal forms of the disease—cardiac, neurological, and advanced pulmonary—are rare. Finding enough people with neurosarcoidosis and bringing them all to the same facility for a drug trial is a challenge—especially when you consider that a lot of funding has not been put into the search for a cure for sarcoidosis and other auto-immune diseases. I recently learned that the clinical trials of a promising drug have three—yes, that’s three—people enrolled. The study based on whose results my doctors recommended that I try chemotherapy had all of six people in it. I think a couple of people died mid-study, meaning I was undergoing my course of chemo and its significant side effects because a small handful of people with neurosarcoidosis had improved on a similar program.

But after learning that my months of stomach problems were probably connected to the same chemotherapy that was supposed to be curing me, I didn’t decide to stop the chemo. Even though a dose of chemo made me very ill for several days, I dug in my heels. I desperately needed to believe that, like strep throat, my sarcoidosis would behave and follow the rules and be vanquished by the chemotherapy. In the shadowy grey land of chronic illness, I decided to think in black and white, in the language of cures and redemption. Endure this, I thought, and I will whip this disease. If I stayed tough and beat sarcoidosis, Jay and Andrew and I would look back on these difficult times and know they were over. We would probably never be able to laugh about me falling down the stairs in front of Andrew or missing his birthday, but we would leave these recollections behind us like a bad law suit. Never again would I spend half my life in bed, I thought, recovering from the infusions that were supposed to cure me. Never again would I hurt Andrew by involving him the drama of my illness, as I did when I was unable to get out of bed to make his soccer game, when I was too immune-compromised and nauseated to go with Jay to drop Andrew off for his first day of kindergarten. I would never again have to lock myself in my room when Andrew got the flu. (The doctors said I couldn’t risk exposure to the virus because it would have a more severe impact on me. So I stayed behind my door, even when Andrew sobbed for me as his fever climbed up to 104.) Never again.

Committed to chemotherapy and cure, I was prepared to ride out the embarrassing and painful stomach problems that the Mayo doctors thought were caused by my pharmaceutical cocktail. Nevertheless, I almost miraculously improved. Even when I began skipping the expensive supplements and began eating broccoli and onions again, I had to rely less and less on adult diapers and spent many fewer nights awake with knife-like pain in my guts. I now believe that I was having a reaction to the drug, Flagyl. Every time I was hospitalized, the doctors ran Flagyl (metronidazole) into my IV “just in case” I had a bacterial or fungal infection that eluded detection in all the cultures and tests. I was sent home with bottles of Flagyl. I suppose it was sound medical judgment to err on the side of being overly cautious and giving me the drug. But my symptoms mysteriously improved after I’d managed to keep myself out of the hospital (and thus off Flagyl) for a couple of months. At that point, a different doctor prescribed Flagyl for a sinus infection that wasn’t responding to two different antibiotics. I casually read the “patient information sheet” that the pharmacy included with my prescription and learned that some patients experience severe cramping, diarrhea, and abdominal pain—sometimes for weeks after finishing a course of Flagyl. I’ve mentioned my theory to various doctors who have been noncommittal about it, but I wonder whether my months of gastrointestinal hell were caused by the drug. If my hypothesis is true, it is yet another instance of how the best medical intentions can go awry. I am learning over and over that the cure can be worse than the disease.

Jay, Andrew, and I limped through the summer. Montana is glorious during this time of year, when the wildflowers bloom on mountain passes and the days stay light until nearly ten o’clock. In years past, we’ve gone camping on long weekends—splashing about and kayaking in a lake, toasting marshmallow and shivering from sunburn at night. Before I got seriously ill, we also did a lot of hiking—either on trails that circle and climb mountains near town, or driving a couple of hours to explore new terrain in a national park or a wilderness trail. Perhaps it is because the winters are sometimes severe and spring in our northern perch can be coquettish—delivering feet of snow in April—that summer here usually feels festive. The farmer’s market comes to town twice a week; there’s lots of live music and an art walk that draws most everyone we know. Our friends have parties or plan float trips down the Missouri River. I wanted to peel back the days like petals off a flower and shower Andrew with them because this was his last summer before starting school. I wanted to hike, swim, camp, play hopscotch in our driveway, take picnic dinners up the hill behind out house, have tea in “Ooblekistan”(Andrew’s “fort” in our backyard), and go on bike rides now that Andrew was cycling on “Blue Streak,” his new bike without training wheels.

I did almost none of these things. Instead I lived in an on/off chemo cycle. One week out of two I was nauseated, woozy, and most comfortable in bed. The other week—what I came to call my “good” week—I tried to cram with two full week’s worth of living. This usually meant that I completely overdid things, and would end up back in bed with a sinus infection or a flare-up of my neurological symptoms. It was a sad, bitter summer for me. I’m not trying to wring out my hankie full of tears to have you all believe that I had the lousiest lot in life. I know that many of you are a good deal sicker than I am and have undergone far worse in the name of a cure. But my point is that I had lost all perspective. I was sick and miserable, and I felt like I was trudging through laps of chemo to reach the magic end point when I would be cured. I saw nothing but the next chemo date, felt nothing but the effects of my current chemo dose. Like I said before, I had utterly “turned off.” Just as surely as if I were shutting off the hose, I stopped feeling. Sure, I caught the disappointment moving across Andrew’s face when I opted out of accompanying him and Jay to the farmer’s market or on a hike because I was barfy. But I tamped down the surge of pain I felt. I stifled my loneliness by listening to my books. I avoided a lunch date with a friend by not picking up the phone. Like the mouse in a Tom and Jerry cartoon, all I saw was the cheese—the end of chemo and my remission—and not the giant hammer of pent-up sorrow and anxiety about my treatment the cat hangs over the reward.

During my countdown towards the end of the year’s chemo, I did notice some improvements with my health. It wasn’t all doom and gloom all the time. I felt crummy the weeks I got the Cytoxan infusion, but on the weeks I didn’t, I was improving. After my first bout of neurosarcoidosis in 2007, I was flattened with pain in my head that was so intense I feel like I minimize it by calling it a headache and vertigo. I learned that the inflammation of cranial nerves caused the sensation of living aboard a ship. But for reasons I still don’t understand, watching television, traveling by car, even reading, exacerbated the vertigo. When I tried to work on the computer or read a book, it looked like the words were moving on the page. It made me feel ill, as if I had extreme motion sickness. I love reading and watching TV, but writing is my job. It was disconcerting, to say the least, to become ill when I tried to do the work I love.

After about six months of chemo, however, my stamina for words began to improve. I went from having to lie on the floor after writing for twenty minutes to spending an entire weekend working on my book and reading a novel. By no means was this an overnight cure. Some days were better than others. But my general trend was improvement. I fell over a lot less from the vertigo. I was able to travel in the car, so Jay and I were able to take Andrew on a mini-road trip and even do some hiking. I believed that if I put in my hard work—chemo—I would get my reward—remission. It’s the same attitude I had applied to most other things in my life ranging from house cleaning to bicycle racing. A little suffering gets results. It’s logical, after all.

Then the floor felt out from underneath me. If I were to graph what happened next, the tentatively penciled line of my improvement, which moved steadily if uncertainly up the page, plunged deeply and desperately down, the line hard and solid as it ran off the bottom of the page. I had spent an “off” week without chemo writing several hours a day, playing hard with Andrew in the afternoons, cooking dinner in the evenings, and snuggling with Jay and catching up on “Medium” and “Lost” and a few other television shows we like that we had fallen behind on because I slept for just about the entire week before when I had gotten chemo. I was over-tired and a little over-worked—you know, the way a normal mother of a young child feels. It was wonderful. Then, without warning, one afternoon I fell down a mine shaft back into the land of pain and vertigo. I could not sleep because of the throbbing in my head. Even when the room was dark and I closed my eyes, I saw the blackness spinning. I was so unsteady I had to call Jay to walk me from our bed to the toilet. I had to bar Andrew from my bedroom because his voice—anyone’s voice above a whisper—ricocheted off the existing pain and echoed in my head. I choked down pain pills and coffee (caffeine sometimes helps headaches), and still I couldn’t sleep. So I added doses of the Lorazepam I usually take only to help ease the nausea that comes after chemo. I had enough drugs in my system to knock out an elephant. But still—infuriatingly and perversely—I was awake, as if my brain wanted me to bear witness to the pain that flashed white in the whirling dark around me.

After two nights without sleep, my doctor insisted I go to the hospital. The nurses were gentle. They spoke softly and kept the room dim as they started an IV through my chest port and gave me Phenobarbital, higher doses of Lorazepam, and morphine. The pain and the vertigo didn’t diminish exactly. But it felt like all those drugs pushed back against the swirling pain and created a small space where my consciousness was able to disengage from the throbbing and the spinning in my head and instead observe it all from a new vantage point. I watched the frenzy in my head as if I were perched on a hill watching a storm beating and lashing a few miles in the distance. Finally, I slept. I awoke a few hours later. I thought I would have slept for a day, but the pain, like that storm, had moved up the hill and found me. I was connected to a morphine pump. Jay was with me, and pushed the button on the pump every ten minutes. Foggy from all the drugs and the pain, I didn’t have the wherewithal to press that magic button that delivered the morphine. After an hour or so of this, I had enough pain killers in my system to create another safe space for me and I drifted back to sleep again.

When I awoke again, it was the middle of the night—during those darkest, deadest hours when the night has its tightest grip and it seems the sun will never rise. I was alone. I knew Jay had gone home to spend the night with Andrew and that he wouldn’t have wanted to wake me before he left. Even so, I panicked in all that darkness, pain, and aloneness. I wasn’t thinking clearly enough to push the button on the morphine pump, to call for a nurse, to dial our home number and talk to Jay. I felt utterly lost. Dawn did not bring clarity. When Jay stopped by to check on me before he went to work, I didn’t feel less alone—maybe even more so. He smoothed my hair, asked about my pain, and pushed the button on the pump for me. He is a good friend and a kind man. I could see his worry about me in the cloudy cast of his eyes, in his paleness, in the tightening lines around his mouth. But for him—and for everyone else who called or visited—this was a familiar routine, me being in the hospital in pain. After all, I had spent several weeks in this same ward during the winter and spring with my stomach issues. So for Jay and for my friends and family, it was rotten that I had to return to the hospital. But after five years of my sarcoidosis, it just wasn’t that unusual.

I was too tired, too drugged, and in too much pain to find the right words to explain to Jay why this episode was different. Actually, I think that I was beyond words. It wasn’t just that I couldn’t land on the proper syllables to make sense of it all. Rather, my fear and pain had left me wordless. So I didn’t even try to make him understand. I put my head under a pillow to extinguish the weak light that made its way through the closed curtain and to muffle the sounds and smells of the hospital morning: nurses delivering paper cups of pills, breakfast trays clattering in the hallway, telephones ringing. This was terribly familiar—being in pain, feeling my head throb in time with my pulse, finding some relief in darkness and silence.

It was familiar not from the winter and spring of gastrointestinal troubles, but from the awful week of Thanksgiving 2007 when the neurosarcoidosis started with a bang—and I spent a week in the hospital cringing from the pain. Back then, the doctors finally figured out that my headache and vertigo were caused by sarcoidosis-related aseptic meningitis and inflammation of my brain stem and cranial nerves. They poured prednisone into my IV and upped the amount of Remicade I was receiving. But this first bout of neurosarcoidosis left me in bed for months—shying away from the light like some Victorian invalid. It was this persistent pain and whirling that had prompted Jay and me to find a new doctor—a sarcoidosis specialist in Cincinnati with a reputation for favoring more aggressive treatment. This was what had led me to start the year of chemotherapy. This same set of symptoms was what had motivated me to try anything—no matter what the side effects—to get my life back, to get away from this blinding pain. And here I was again, as if nothing had changed—as if nine months’ of chemo were irrelevant, as if that steady line of progress had been a joke or an illusion, as if this swirling and hurting was my past, present, and future.

I still fumble with words to explain my despair and my horror at suddenly being back where I had started, no matter how tough I had been in enduring the chemo. In that early morning, as I huddled underneath the pillow and thought of my slow improvement vanishing, literally, overnight, I felt as though a vital piece of me had broken. It was my capacity to hope was cracked and torn. I didn’t think of Byron’s poem “Darkness” that morning. I couldn’t find words, much less poems. But I recently re-encountered this poem, which I had first read long ago in a college English class, and it gives voice to my thoughts that morning.

I had a dream, which was not all a dream.
The bright sun was extinguish’d, and the stars
Did wander darkling in the eternal space,
Rayless, and pathless, and the icy earth
Swung blind and blackening in the moonless air;
Morn came and went–and came, and brought no day…

The doctor came on his morning rounds. I emerged from under the pillow and squinted at him as he asked how I was, if the sleep had helped me, if the morphine brought more pain relief than the narcotics at home. I didn’t care that I was a little better than the day before. I was enraged that I was back in the hospital with the same set of symptoms as in 2007. I had followed the White Coats’ orders. I had played by the rules. I had done my penance and now I wanted my reward. The doctor who cares for me in Helena is a good man who I believe genuinely cares for me with same diligence and warmth as his other patients—even though he is implementing a treatment plan that another doctor devised. My Helena doctor has always been scrupulously clear that he is not the sarcoidosis expert. But while the sarcoidosis expert devises a treatment plan for me and checks me every six months, it is my Helena doctor who has to pick up the pieces when the treatment plan makes me violently ill or when I relapse. That early morning, I hurled at him my rage for the injustice of being back to where I had started. Nine damn months of chemo, for absolutely fucking nothing. Why, why, why, I spat at him, had this happened?

The doctor said again that he wasn’t the sarcoidosis expert. But he had e-mailed the sarcoidosis expert about me. What they thought was that I had “overdone it” and was suffering a temporary setback because of this. My lack of sleep, combined with the physical and emotional efforts of working and mothering, had pushed me over some invisible edge and allowed my neurosarcoidosis to flare. “That makes absolutely no sense to me,” I said. I was still thinking in black and white terms—in the beautiful realm of cause and effect. Even though I had left that world five years before when I was pushed into Chronic Town, I still fought for the medical simplicity of the strep test and the logic that by enduring chemo, I would be cured. Instead I was spiraling into the grey haze of Chronic Town. “Are you saying,” I hissed at this good man, “that by writing for five hours a day instead of two and by sleeping for six hours a night instead of nine I have allowed my disease to come back?” Yup, that was pretty much what he was saying. I had overtaxed my limited resources, but both he and the sarcoidosis specialist believed I would bounce back after a couple of days and a prednisone bump. He tried to explain it to me, but I would have none of it.

Rather than to succumb to the murkiness that characterizes everything about sarcoidosis, I chose despair. Since I was determined to think of my relapse in absolutes—in the black and white terms of sickness or wellness—I necessarily saw the return of intense pain and vertigo as a return to sickness. There was a third way of seeing my situation, but to get this perspective I would have to let go of my binary vision. Although I couldn’t comprehend the meaning beneath his words at the time, what my Helena doctor was suggesting was that I now dwelled between terrible sickness and complete wellness. I wasn’t ready for this because I wasn’t capable of giving up my quest for a cure. So I stewed in a mess of pain and hopelessness. I gave myself over to the morphine and my terror that I was uncured, unwell, back to the months of illness, pain, and vertigo of 2007. I was lonely and bitter in that narrow hospital bed and I made no efforts to feel better. I didn’t try to talk to Jay; I took no calls; I didn’t allow Andrew to visit me.

The doctors were right. After a couple of days of rest and 140 mg. of intravenous prednisone, I felt better. The spinning subsided, and the pulsing pain in my head receded. I promised my doctor I would call him before letting the pain become so bad that I couldn’t sleep. We talked about how to taper down from the high dose of prednisone and how many oxycontin pills I should take. We scheduled my next chemo infusion. The doctor briskly patted my shoulder and told me I would be alright. “Just don’t push yourself too much,” he said. I agreed and signed my release papers. Jay smiled and kept his hand on my leg for the whole drive home. Andrew was waiting at the door, hopping from the excitement of seeing me. I was happy to be home. I had missed Andrew’s smell of shampoo, fresh air, and little boy sweat. I had missed Jay’s voice and the feel of his gaze on me.

But I couldn’t shake my loneliness. Even as I snuggled and read to Andrew, even as I uncoiled next to Jay, even as I spoke with my closest friends, I felt strangely alone and apart. It felt impossible to explain to Jay or to anyone else how shaken I was by having my disease show its yellowed and foul fangs so casually and quickly—after a week’s worth of normal living. I tried to express this, but I didn’t fully understand my feelings. Ironically I got the most understanding from cyberspace—from old friends and acquaintances who had “done time” with illness. I wasn’t keeping my blog going, but I had signed up for Facebook a few weeks earlier. When I wrote a couple sentences about the neurological flare-up and how upset I was about it, I received several e-mails from perceptive friends that comforted me. Even though some of these people hadn’t seen me for years and some had never laid eyes on me, they helped me see why I felt undone. “You expect progress to be linear,” someone wrote me, “but when it comes to illness and recovery, you move backwards almost as often as you move forward.” I couldn’t yet accept this truth, but I felt less lonely knowing other people had gone through the despair of seeing their progress unravel.

I stifled my fear and outrage about the neurological flare-up, and went back to living every other week. I wrote for a few hours the weeks I didn’t get chemo. I was able to put Andrew to bed every other night—the routine he likes best—and I saw friends when I wasn’t too tired. But I didn’t want to gaze too deeply at the low-level depression that dogged me since the hospitalization. “I’m just tired,” I told Jay, when he asked what was wrong. “I’m just sick of chemo,” I told Molly when she wondered why I couldn’t summon up the energy to meet for lunch. Everyone—even the White Coats—told me how much better I looked. “Yes, the chemo does seem to be working,” I said in response. But the words felt like ashes on my tongue. “You are going to get well. I just feel it,” our nanny Connie told me every couple of weeks. “Yes, I know,” I said, trying to inject some enthusiasm into my voice. It was hard to explain to all these good people who were excited at my improvement that I no longer had any faith in getting well. I had lost my footing on territory more metaphorical and profound than the bedroom floor when the vertigo had returned. And it was difficult for me to voice to my well-wishers how costly my improvements were. I didn’t lose my hair with the chemo, but I had lost my energy and my immune system. But I felt like I was being a bad sport with my glumness and yawning.

We all lived on autopilot until the year of getting chemo every other week was over. Jay and Andrew got into a weekend routine for the “on” weeks when I got chemo. They’d go to the Farmer’s Market and library, then hike up Mount Helena, and finish off at the brewery where Jay got a pint of stout beer and Andrew had bowls of popcorn. They ran into most of our friends at one or other of these Saturday stops. They both told me that Jan said “hi” to me or that baby Emmett was growing up fast. I missed being a part of my own life. But I honestly welcomed the silence and empty house because in the bedroom made dim by heavy curtains, I didn’t have to try to be perky and upbeat for Andrew’s—or anyone’s—sake. I never answered the phone—partly because I was too nauseous to carry on a conversation, and partly because I didn’t want to participate in the outside world. If was getting well, as everybody told me, I shouldn’t be laying in a medicine- and fatigue-induced stupor. If was getting well, I shouldn’t be afraid of the next sarcoidosis attack catching me off guard. It was easier to keep my distance—even from my own son—rather than risk drawing people close to me only to disappoint them with another setback. In my black and white land, there wasn’t much room for being in between health and sickness. I couldn’t deal with the paradox of being a little sick from the chemo so that I could improve later. I couldn’t even begin to acknowledge that the sarcoidosis remained—sometimes more powerful, sometimes more controlled—no matter how hard I tried to banish it. Rather than give up my absolute thinking, I chose to castigate myself for being a failure. It is fucked up, I know, to choose to loathe myself for being exhausted from chemotherapy instead of yielding to the truth of middle ground. But that’s what I did. It was easier to blame myself for not being cured than to hold less tightly to the concept of a cure.

Somehow, we made it to September. After Andrew left for a vacation at my parents’ ranch, Jay and I flew to Cincinnati to see the neurosarcoidosis specialist. I carried with me discs with the latest MRI pictures of my head, lungs, and feet. I had copies of blood work and every test I’d had since I last saw the guru. I had a stack of reports from every infusion and every doctor’s office visit. I was a pilgrim going to the holy well to seek absolution and healing. Now that I’ve been doing long-distance medicine for five years, I know I’m not the only modern-day penitent pilgrim. I’ve seen thousands of others like me, traveling for thousands of miles to seek healing from one who specializes in rare diseases. My college work on medieval mystics has given me a unique perspective to view my semi-annual trips to the sarcoidosis guru. I’m not so different from Marjorie of Kemp—a thirteenth century woman in search of salvation—who traveled from shrine to shrine across Europe. Nor am I much apart from those today who go to Lourdes or Fatima in hope of a miraculous cure at the hand of God. Maybe now—after this last visit—I’m a touch more jaded. But in September, I clutched my medical records just as surely as Marjorie clung to her rosary. And I had proved I would drink from any well—even if it were poisoned, like my chemo—to be cured. If I believed enough, if I tried enough, if I endured enough, shouldn’t redemption be mine? I hadn’t traversed the Camino de Santiago on my knees, but hadn’t I crawled through chemo doses until I was inured to the pain of the ordeal? Shouldn’t my guru look over the reports of my journey and grant me health?

I arrived at the guru’s office fifteen minutes early. I didn’t notice the anonymous hallways we walked through. The waiting room could have been in Helena or Denver or Philadelphia with its “medical decor.” Anyone in Chronic Town knows it—the beige chairs and flowered sofas, the stale air that carries a whiff of hospital disinfectant, the glare of fluorescent lights, the piles of greasy magazines a year out of date, and the bland prints of flowers or landscapes on the walls. I sat with Jay on one of the sofas. My palms were damp, and my heart was hammering. I told myself not to expect too much, not to hope that the guru would look at my chart and say, “You know what? That Cytoxan really did the trick! You are cured! Now, let’s stop all your medicine right now.” It’s ludicrous to admit—and even though I admonished myself otherwise—this ridiculous scenario was exactly what I hoped for. Those words of absolution were the reason I was there in a Cincinnati hospital, far from home, but familiar with the surroundings nonetheless.

My meeting with the guru was a good one. He spent an hour reviewing the data I’d brought him, examining me, asking me questions, and reviewing the long list of questions I had for him. His expert eye confirmed what my friends had told me. My neurosarcoidosis had indeed improved after a year of Cytoxan infusions. The inflammation in my brain stem and cranial nerves was better. The sarcoidosis lesions on my foot bones had not worsened. My liver tests were back to normal, and my lungs were crystal clear. He recommended that I taper down on Cytoxan by diminishing the dose of each infusion and increasing the time between infusions. For the first few chemo cycles, he wanted me to get 200 mg. less Cytoxan and for me to get the chemo every three weeks. If the sarcoidosis didn’t flare with this regimen, then I could knock another 200 mg. off the dose and only go in for the infusion every 4 weeks. He thought it was a reasonable goal for me to be getting half my current dose of chemo every six weeks by the time of my next Cincinnati appointment six months hence. He also wanted me simultaneously to taper my prednisone by decreasing my dose a milligram every month. Although Remicade has a host of frightening potential long-term side effects (mostly a heightened risk of various cancers), he wanted me to maintain my current monthly dose of the TNF blocker. “If we change too many variables, and then you relapse, we won’t know the cause,” he said. His logic was sound, and I was pleased—no, delighted—at the prospect of less chemo. The drop in prednisone was an added and unexpected thrill.

His talk of sarcoidosis flare-ups and relapses frightened me, though. It didn’t sound like he was talking about curing me of the disease, especially when he began to wax on about the new drugs being tested for sarcoidosis. “If you have a major relapse,” he said in a kindly voice, obviously with the intention of making me hopeful, “there’s a good chance that in the next couple of years we’ll have new medications with fewer side effects available.” I rolled his language around like a lozenge. If I have a major relapse. If we change too many variables and then you relapse. Unbidden and unwanted, an idea was taking shape and gaining solidity in the back of my mind. I pushed it away. I fingered my list of questions before asking him about my last hospitalization. How was it that my sarcoidosis could suddenly come back because I had “overdone it?” Was my mother right when she lectured me to take it easy? How could the headaches and vertigo reappear with such viciousness if the Cytoxan, Remicade, and prednisone eradicated the disease? His pause gave the idea time to gain a clearer shape and heft. He’s telling me the sarcoidosis is always there. It is still there. The chemo hasn’t eradicated it. “Well, tell your mother that she is correct about this one,” he said with a boyish grin. He went on to explain that “stress of any kind” gives illness opportunity. He digressed to talk about new cancer research which indicates that you are more likely to get cancer after a stressful life event—divorce, an immense physical challenge, death of a loved one, or even a couple of bad years at the office. He returned to the specific question of my sarcoidosis. He told me that the “various agents” were “controlling the disease,” but stress from over-working, over-exercising, over-worrying could overwhelm the flimsy defenses of the drug cocktail and let the disease pop up. Sarcoidosis is an inflammatory disease, he reminded me. It results from a normal immune response—of which inflammation is a component—gone awry. And stress causes an inflammatory response not that dissimilar from the disease. So, yes, he concluded, “overdoing it” could land me in the hospital.

The appointment wound down. Jay and I said our thanks and collected our papers. We didn’t really talk until we had left the re-circulated air of the hospital and stood outside the building. My husband and I agreed that I had just heard “great news.” We called our parents and close friends who had all been standing by, worried about what the famous sarcoidosis healer would say. I smiled a lot, but the smiling hurt—as if I were forcing the muscles into an unfamiliar position. I was also tired. It felt like I had been holding my breath, and now I could finally let it out. Jay and I returned to our hotel across the street. We lazed in the high-thread count sheets. Jay looked as though he had just dodged a bullet. And I didn’t know what to think, what to do with myself.

I kept re-examining parts of the visit. The guru had been trying to explain the reality of chronic, systemic sarcoidosis. “We’ve found the sarcoid lesions on your foot,” he had said. “But if I used PET imaging to scan your entire body, I’d bet that we would find similar lesions in all your bones.” The thought of my bones riddled with lesions nauseated me. “Now, whether the lesions are active sarcoidosis or not would be harder to tell,” he had continued. “It isn’t as if there is an on/off switch. Your body’s immune inflammatory response is ongoing. Flare-ups and periods of quiet are part of the process.” In other words, I thought, as I snuggled closer to Jay beneath the crisp sheets, it’s just a question of degrees. The doctor had been sure to add that there was always a chance, “a not insignificant chance,” that I could wake-up and be cured. But his cheery post-script seemed at odds with everything else he had said. I began to feel like a one of the rats following the Pied Piper. I had marched for miles around Hamelin to hear his cheery tune. But I was beginning to hear the lapping of the Weser River, where he planned to drown us, no matter how sweetly he played his flute. Had I been blindly scurrying after the notion of a cure, heedless of the evidence against it? I closed my mind to doubts and questions, rested against Jay’s warmth, and fell asleep.

The oblivion I found in sleep was not to last. Even though I wanted to stay mostly numb and avoid the reality of my disease, my ankle apparently thought it was high time I bring to the surface my subterranean thoughts. On our last day in Cincinnati, Jay and I walked a few blocks to a Chinese restaurant. As we crossed the street to return to our hotel after lunch, both the anterior and posterior talofibular ligaments in my ankle ruptured spontaneously. I didn’t twist my ankle, stumble, or even have a hint that something was amiss. Suddenly, in the middle of a busy four-lane street, I heard a loud popping sound. I collapsed without even the time to put my hands out to brace myself. So I landed chin first in the road. Jay said I went down so quickly, he thought I had been shot. Once I was on the pavement, my ankle began to throb. By the time Jay had half-carried me out of the traffic, my ankle had swollen to nearly twice its size. I knew exactly what had happened because almost exactly the same thing had happened just a few blocks away during a previous trip to Cincinnati.

Although I sometimes muse that my connective tissue must be allergic to Ohio air, the truth is that my tendons and ligaments—like the rest of my body—are compromised by sarcoidosis and the medications I take to treat sarcoidosis and the secondary side-effects of those medicines. The guru has said that it’s “quite likely” the disease has infiltrated my connective tissues. But there’s no reason to spend thousands of dollars to be certain whether or not I have sarcoidosis lesions in my ligaments because this knowledge wouldn’t change anything. The prednisone I have taken in greater and lesser amounts for the past five years thins and stresses connective tissue. So do the antibiotics I often take to fight off the sinus infections I’m susceptible to contracting because my immune system is compromised by all the treatments. Last, but in no way least, is the 7-odd stones of weight I’ve gained. I can’t say that prednisone has mysteriously added a hundred pounds to my once muscular body. But it certainly has increased my appetite, and I have struggled not to respond to this hunger by over-eating. Once I grasped that my tired and damaged ligaments have to support extra weight, my Cincinnati face plants made sense.

Even though I knew the cause of the injury, it was an ordeal. Only somewhat melodramatically, I felt as if I was cursed never to have a few days of respite from sarcoidosis and the host of problems it brought with it. I hadn’t even been able to bask for two days in the relatively good news I got in Cincinnati. Rather than celebrate with friends and family that I would be getting less chemo, Jay and I immediately returned to the all-too-familiar crisis-management mode of the past five years in Chronic Town. Instead of easing into a new routine, we had to travel to Missoula to see the orthopedic guru. She said I didn’t need immediate surgery, which was a relief. But I was seriously debilitated by the injury. My ankle was so swollen I couldn’t fit it into any kind of “boot” or air cast. I wasn’t to put any weight on it at all, so I once again had to rely on a knee scooter to get from my bed to my bathroom. My ankle was a mess, and the doctor had warned me that I had a long convalescence ahead. One afternoon was particularly bad. Our nanny and care-giver had quit without much warning, and Jay had work meetings he could not miss. Even Andrew was gone at school. With no one to help me, I crawled up the steps to my bedroom, carrying an ice pack in my mouth, so that I could elevate and ice my ankle according to the doctor’s instructions. I was unsteady from pain medicine. I had worked hard to taper nearly off the stuff, but now I was back to needing it to control the throbbing. Friends called, and though they were solicitous about my ankle, no one seemed to get how serious the injury was. If I had damaged my ankle to this degree before I was forced into Chronic Town, I would have thought such an injury was calamitous. Now, it was simply yet another instance of me being sick. Everyone—including myself—no longer found my hospitalizations, surgeries, and injuries out of the ordinary.

Call me oblivious, but my powers of denial run deep. It was actually a revelation that I was frequently quite ill—either because of sarcoidosis or because of its treatments. I was stuck in bed keeping my bloated ankle elevated above my heart. There was little to distract me from my thoughts because watching television and reading could still trigger vertigo. It was a dark time. True to the sarcoidosis guru’s prediction, stress—in this case, my body’s massive inflammatory response to the ruptured ligament—caused the sarcoidosis to flare. I could no longer numb the despair and rage I felt at being so sick for so long, in spite of the Herculean attempts I had made to be cured. I spent the time before Andrew came home from school at home alone, angry, and depressed. I followed the new treatment plan and cut back on the chemo—both in dose and in frequency. The extra week was a respite, like finding extra time. But I felt helpless as the “markers” for my sarcoidosis showed a flare. My liver levels became highly abnormal once more, bringing with them a dull pain in my abdomen that indicated hepatic inflammation. My sed rate, a blood test that reveals inflammatory activity, rose steadily. My joints began to ache, and X-rays of these bones showed early arthritis. I began to get more headaches, and my “word limit” began to shorten. It took less and less time for writing or reading to trigger vertigo. The guru and my team of local doctors quickly scuttled the proposed prednisone taper. We decided to hold the line in terms of the Cytoxan, though, and stick to the plan of decreasing its frequency.

The recurrence of symptoms, combined with time to reflect on them, finally broke through the thick wall that had kept me from moving into a new way of looking at my sarcoidosis. For five years I had fought hard to be cured. But five years of battle had taken its toll. If I could eradicate the sarcoidosis, it would probably be a pyrrhic victory. I re-played the guru’s words, almost fumbling with them so that I could understand them. Although he wouldn’t rule out spontaneous remission, he had tossed out this possibility at the end of our meeting, almost like an afterthought. Most of our meeting had dwelled on the extreme chronicity of my chronic illness. He had left me with the understanding that the sarcoidosis was here, inside me. It was caught up in the flow of my blood, the pumping of my heart, the filaments of my nerves. It was in my breath and bowels. It was now as much a part of me as my own organs. Perhaps I could kill it, but in the process I would probably kill the rest of me. I had to stop living in the world of pure white and deep black. It would make me crazy to stay here. I had to edge toward the wisps of fog that characterize the land of grey. I had to drive down the main street of Chronic Town and get my bearings. It would be nice to be cured. But I don’t have a strep throat kind of sickness. Mine is, as the guru had said, a normal immune response gone awry. There are no invaders. The problem is one of internal mixed messages, of my body’s own warrior impulses getting confused and infiltrating my own organs.

I certainly wasn’t ready to acquiesce to the sarcoidosis, to let my immune system cause more muddles within me. But, as the guru had quietly suggested, I had to think more in terms of managing the disease, not vanquishing it. I’ve had some practice with this new thinking. Jay, Andrew, and I were able to take a family vacation to Oregon and Washington. My progress towards getting healthier was obvious. I could travel in the car for a thousand miles. I managed to be in a museum for seven hours, and to watch an IMAX movie (and not have to be scraped up off the floor afterwards). I was beginning to exercise again, with the help of an astute physical therapist who worked around my obstacles. I began training in mindfulness and different meditation techniques under the direction of a mentor. I have been encouraging Andrew and Jay to join me in celebrating and living in this very day, instead of waiting for a cure or waiting for death.

It has been a challenge to live as much as I can in each moment when the sarcoidosis is more active and its limitations more debilitating. Just as soon as my ankle began to heal, I broke two bones in my left foot. The x-ray revealed a sarcoidosis lesion right where the bones had cracked. Whether or not this is a new lesion or a calling card the disease left months ago isn’t clear. But I am once again stuck in an orthopedic boot looking at a long rehabilitation. I’ve also had a major recurrence of my neurosarcoidosis. The headaches and vertigo became so severe that I was once more frozen in my bed, hiding under my pillow to avoid light and sound, and unable to walk because the floorboards looked unsteady and I didn’t want to fall. It was painful in different ways to contact the guru and raise the alarm about my problems. Both he and my other doctors agreed that I needed to go back to getting Cytoxin every other week until this latest neurological ruckus has subsided. It was also difficult to agree to get an infusion of 1,000 mg. of prednisone to decrease cranial inflammation—and hopefully decrease the pain. The collision of chemo and so much prednisone made for a very rough week. But I survived, and I do feel better. In two more days, I’m due to repeat the chemo/prednisone bomb. I’m not looking forward to it. But right now, I am able not to castigate myself for relapsing.

Letting go of the sickness/cure rollercoaster is a daily process. I am not always successful, but I am edging into living my current life—not the life I think I should be living. “Mommy, maybe tomorrow you will wake up and be 100 percent well,” Andrew frequently tells me on the nights I am able to put him to bed. “Right now, you are about 70 percent well,” he adds. Quantifying my wellness is his way of starting to accept that I might not reach the 100 percent he wants for me. But I always remind him before he goes to sleep that we shouldn’t worry about percents. I tell him we should love each other and live each day as much as we can. And I lie next to him until he releases his hold on that day and surrenders into the unknown realm of his dreams.

I have disappeared from this little niche in cyberspace for quite some time. My absence was deliberate. I took a break to think about whether I wanted to keep writing for this blog. In these weeks away, I’ve learned how important this outpost in the wild territory of chronic illness is for me. I’m writing today to say that I’m back. And I’m back to stay.

In my last entry, I explained why writing the way I do here—instead of just posting snippets like most other bloggers do—was an effort I was beginning to question. I was sick and exhausted from both sarcoidosis and the treatments that control the disease. I wondered if I should be using my limited time and energy to write material that had the concrete rewards every author seeks—publication and payment. I had an agent waiting for chapters of my proposed memoir that explores the same terrain as this blog: becoming chronically ill at nearly the same time I became a mother, and then trying to live fully while perched on the cusp of these two divergent worlds—the blossoming life of my now five-year old son, Andrew, and the constant pull towards illness and death from the sarcoidosis. But I wasn’t making much headway on the book because I was getting chemotherapy every other week, and this left me with barely the energy to shuffle into the shower, much less construct a coherent sentence. Given this hard reality, it seemed imprudent to expend my precious resources on something as nebulous as a blog.

Fortunately, I was sensible enough not to shut down the site. Instead, I allowed myself to drift from my blog. I gave myself time to work on the book chapters. They’re still not done, but I made progress. However, I didn’t use the time freed up by not writing for the blog to work more on the memoir. Instead, I slept more, moped more, listened to more books on my ipod, and felt more deeply mired in the brutality of my chemotherapy regimen. I also found myself feeling lonely. I was surprised by this because I have a kind husband, two supportive extended families, and friends both near and far who help Jay and me in ways too numerable to describe. I’m on Facebook so I can have daily connections with friends and family, even on days when I’m too sick to pick up the phone and talk. But still I felt an aloneness that gnawed at me.

After pondering my new loneliness for a while, I understood that it was connected to my absence from my blog. Some background will explain why. You see, I was undone when I was diagnosed with a disease I had never heard of in 2004, and then became sicker and sicker no matter what the doctors did. I had felt like my life was just getting started, and suddenly, I had doctors coldly telling me it might end at any moment. Everything I had planned for my life changed seemingly overnight. I became too sick to work; the prednisone the doctors prescribed to control the sarcoidosis made me so hungry that I ate constantly and gained nearly one hundred pounds. I was too sick to care for my beautiful new son, Andrew, so we had to hire nannies to help. I went from being an athletic, energetic woman with dreams of traveling, writing, and growing our family to a fat, exhausted woman whose only notion of traveling was watching the disease zip from organ to organ in my body. Instead of working, I went to doctors. Instead of hiking with my husband and son, I ate incessantly to quiet the hunger caused by the drugs and my hunger for things to return to how they were.

But I was determined to snatch something positive from all these negative experiences. This blog was my attempt to do just that. I knew I couldn’t be the only person in the world going through the unwanted changes wrought by sarcoidosis. I knew there were dozens of other chronic illnesses and millions of other people who lived with them. I knew I couldn’t be alone in trying to make sense of a new set of circumstances without any kind of guidebook. So when a friend showed me her blog, I had an epiphany. This was how I could make my mark on the enormous chalk board of illness. My goal when I launched the site was to create a community. My hope was that if I wrote about my own experiences with chronic illness, maybe other people would relate and not feel the aloneness that I did. I grasped that being sick too often takes us away from everything familiar. This transformation is so profound it is like moving to a new place, so I named my blog Chronic Town. I envisioned all of us with sarcoidosis, lupus, cancer, multiple sclerosis, or any of the other chronic diseases transported to a strange new city. And it was strange. In Chronic Town, hospital towers loom larger than any other building, and the person you thought you were is a different one altogether. By writing about my experiences, I hoped I could turn a metaphor for a state of being into a true community. I could build a safe house in this frightening world of sickness. However, what I hadn’t understood when I thought I might shut down the blog was how much I relied on the solid walls of this house.

After dealing with sarcoidosis for over five years, I thought I had the lay of this not-so- new land. But I don’t. In Chronic Town, the crooked streets are confusing. Just when I think I know where I am heading, one of these streets will double back and bring me virtually to where I started. I am forever getting lost, and the city has no maps. To get around, I need guidance from others who have stumbled on these same roads. But unless I look carefully, I can’t see the other people walking with me. These people have helped me find my way in the darkest nights. For the years I have written faithfully for this blog, I received a steady stream of comfort and motivation to keep fighting the disease from readers who wrote comments, sent e-mails, or called me. They were kind when I needed kindness. And when I was trapped in self-pity, they told me to get moving. They told me their stories, their ways of picking themselves up when they fell down. But when I stepped back from my blog, I lost this support. Without it, I have come to understand and more fully appreciate how the help from other citizens of Chronic Town is different from the love and kindness I receive from my husband, parents, family, and friends. Even Jay, the person closest to me, can only imagine the level of fatigue I feel, the disappointment that courses through me with a setback, the literal pain in my heart that comes at seeing Andrew’s five-year old version of stoicism when I am carted off to the hospital one more time, or the spark of hope that flares into a bonfire with good medical news. But the other residents of Chronic Town got it because they had felt it too. Knowing them and learning from them was a salve to the feeling of being terribly alone with a terrible disease. When I severed my connection with this community, I lost this balm.

When I was calculating the investment of the time and energy I put into writing for the blog, my equation was inaccurate because I hadn’t accounted for unknown variables. True, I’m not earning big bucks (or any bucks, for that matter) when I compose these essays. But the sense of community I gain is a factor beyond worth. So too is the bridge my writing has built to others without chronic illness. I’m not sure my friends and family would have the empathy and compassion that sustains me if it weren’t for the writing I did here. Because I have a deep fear of whining, I become tongue-tied when it comes to voicing my physical pain, my unending tiredness, my setbacks, the difficulty of chemotherapy, my fear of dying, or my struggle to mother and work when I feel indescribably lousy. Without the blog, I don’t think even the closest people in my life would have a sense of my reality. The other day Jay asked me if I planned ever to work on the blog again. I was surprised when he said, “I miss knowing what’s going on inside you.” Since abandoning the blog, I’ve noticed that while my friends might know the events of my life from phone calls, e-mails, or Facebook updates, it’s hard for them to understand the impact of these happenings. For instance, a recent serious ankle injury—which came just days after I got relatively good news from my sarcoidosis specialist in Cincinnati—derailed me physically and emotionally. When I told people about the ruptured ligament, they were solicitous and offered help. But most friends were puzzled that I was so upset about what to them was just another sarcoidosis-related hurdle. I lack the verbal skills to explain scenarios like this one. But I can write. While I never intended to have my blog be educational about the hardships and happiness of life in Chronic Town for those outside the walled city, it turned out to do just that. Readers e-mailed me that they had shared the site with healthy folks so that they could better understand what it means and how it feels to be chronically ill. I’m glad that the blog served others in the same way it did me.

Another variable I hadn’t grasped was that working on the blog makes my life better. For better or worse, my primary way of understanding and learning is through words. The process of writing helps me truly see the world around me and the one within me. Writing makes me take notice. It is my best avenue into mindfulness. The essays I post have come from my heart, and writing them has healed my heart. In writing about a particular issue—whether it’s explaining something in my life that is snarled because of my illness, or relating something good that has propelled me forward—I force myself to face what is actually going on in my life—good or bad. Without the task of the blog, I have felt like a pale and fleshy mollusk that has crawled into a shell. The sea washes over me. All sounds and sights are muted. I’m safe in the carapace, but I can’t see the beauty that surrounds me; I can’t feel the sea around me.

This tide of events can feel overwhelming when it comes crashing down on me—when my ligament explodes or the chemo makes me sick. But there is also great beauty and mystery in the forces of this sea. Without writing to help me, I can’t make sense of it; I can’t find meaning in the ebb and flow. The process of taking the material of my life and weaving it into an essay compels me to find a structure and meaning—even when I feel hopeless or lost. Without writing about it, I can’t make sense of this illness, can’t see the lessons that sarcoidosis has to teach me. Before I got sick and became a mother, I was an altogether different person. I moved quickly, worked hard, and traveled far. Perhaps I wouldn’t need my blog if I was that person. But the woman I am now after five years of sarcoidosis still needs the discipline of writing to understand the shift in my life. Through writing I can grasp the achievement of being able to read to my son once again, the joy in watching a movie with my husband, and the happiness in having a cup of tea with a friend. Without writing, I see only what I don’t have.

For all these reasons, I am making a commitment to return to my blog, to post entries on a regular basis. I’m not sure what a “regular basis” means—maybe weekly, maybe more, maybe less. I’ll figure that out once I settle into my new chemo schedule and Andrew’s kindergarten routine. But I am pledging to myself to show up for my life, to take notice of all that surrounds me. I want to hear from you and about you. Send me your stories. I am thankful for the great gift of this space, for all the other folks from Chronic Town who found me and helped me find myself, for all the people outside Chronic Town who bless me by understanding. See you soon.

Okay, okay, okay. I know. It’s time for a session of truth telling. So, let’s get started. Scrape. That’s the sound of the chair being pulled out, and thud, that’s me being shoved down into it. Ping. Somewhere above, a bright light has blazed on to “help” jog my memory about the events of the last year.

I’ve joked before about not having an interior voice of reason and intuition that lets me know how many commitments or tasks to take on. (http://chronicville.wordpress.com/2006/06/). So, I thought it best to outsource my capacity to say “no” to the people who want to see me when I’m feeling exhausted. Like so many other businesses, I reasoned, I should look to a South Asian call center for help in acquiring that piece of myself that acknowledges that I have little energy and even less time available. In Bangalore, I said, I would find Rajesh (who goes by Sean for his American clients), and would put him in charge of saying “No,” firmly but always kindly.

That worked at first, but I’ve come to realize that saying “no” as an acknowledgement of my limitations isn’t enough. Sometimes an even harder look at things is required. So (at the risk of over-literal readers taking my sorry attempts at humor too seriously and deciding that my main problem isn’t having sarcoidosis but multiple personality disorder) I’ve now employed Viktor. Viktor has a shady past, and can be a bit brutal in his techniques. But I think that’s what I need right now.

As you can see, my posting on this blog have become much more erratic and sporadic during the past year. Weeks and sometimes months go by between me writing something new. I won’t lie. Producing these pieces is a lot of work. I try to hold myself to a standard that, in reality, isn’t very “blog-like.” This is due, in large part, to my inner perfectionist (which, for the sake of preventing further confusion, I will leave unnamed – though feel free to make suggestions in the comments). As someone who once earned my living by writing, I cringe at shoddy, haphazard prose—especially when I’m the one producing it. I could keep readers apprised of my sarcoidosis-related events more regularly if I simply posted snippets more like my Facebook “status updates” than like the formal essays I try to produce here. (Which reminds me, if any of you want to be in touch via Facebook, where I do post shorter, more regular updates, look for me there—Rebecca Stanfel— and send me a “friend” request.) Following this strategy and changing the format and feel of my blog would certainly cut down on my work load. And it perhaps would serve as a balm to the nagging interior voice (also unnamed) that tells me, “You’re not getting paid for all this effort,” and “No one appreciates all the work you put into these pieces.” I know people read Chronic Town because I have access to the record of “hits.” But it’s not as though my comment section is overflowing; without the data from my server, Word Press, I truly would feel as though I was writing—and putting my heart, as well as well as some sweat—into the proverbial void.

However, making Chronic Town more like a standard blog would go against my mission. Although I’ve never overtly stated the goals I have for this Web site, I hope it’s apparent that I don’t think of this blog as a personal forum for me to vent to the world about the dirty details of my life. Rather, I have tried to coherently convey the reality of living with a chronic illness, of attempting to balance the demands imposed on me by sarcoidosis with the demands of family, work, and daily life. I have hoped that it is not just good for me—but good for my readers— to have a forum to communicate freely about how damn hard it is to be ill and yet refuse to become an invalid.

Over the past four years of maintaining this site, I have gotten e-mails and comments that have let me know that I am not the only one who has experienced the topics I write about. I am not alone in the feeling of constantly juggling nine balls of different shapes and sizes, while blindfolded and sagging with exhaustion. Those of us who are chronically ill (and plenty of others who aren’t) can’t even tell which ball is sailing towards us—and then the ground— because of the blindfold. Our hands ache, our stomachs churn. Who are we letting down if this one ball crashes and explodes into sharp shards around us: our children, our partners, our employers, ourselves? Can’t we just rest for a while?

My unplanned plan with my blog—the realization that emerged after I developed a rhythm during the first few months of posting my thoughts—was to forge a community for those of us stuck in chronic town: the new emotional landscape we have all been cast into once we were diagnosed with one of those nebulous chronic diseases that make doctors furrow their brows and then shrug their shoulders in resignation because no one knows how to cure (or sometimes even treat) them. Maybe I’m just a control freak, but it feels as if I were to change my philosophy and turn my blog into inchoate rambling lines about my life, I would be disrespecting the community I have inadvertently created. I want to be a voice in the wilderness that gives thought to the condition of chronic illness. I have felt that I deserve, as do you, coherent examinations of the various situations in which we find ourselves, as people with not just sickness, but also families, jobs, hopes and dreams. We aim to be cured, whether we follow the medical philosophy and protocol of Trevor Marshall, or whether we settle on “conventional” medical treatment. Either way, whether we are swallowing prednisone or Benicar, our bodies ache, our lungs work without full capacity, our hearts follow new and frightening rhythms, our skin erupts, our eyes are damaged, and our nervous systems become downright anxious with sarcoidosis inserting itself into neural pathways. If we can’t be cured, then at least we will keep living—parenting, working, walking, simply being—whatever our prognosis may be.

So, I have opted for silence lately— not because I haven’t had any news to report or issues to mull over, but because…. Because—and here’s where I need Viktor to inject me with the truth serum he extracts from his attaché case—I haven’t been physically capable of writing this type of essay. Why is this a big deal? Why bring in Viktor and subject myself to an imaginary interrogation? Because I have never been as incapacitated by my disease as I have been lately. If you’ve been reading Chronic Town, you’ll notice that after I haven’t posted for a while, I’ll resurface and usually explain my absence in cyberspace with a line or two about lacking time and energy, being depressed and thus wanting to isolate myself, or being caught up with other family events. It’s all true. But it is only a surface truth. I have skimmed a piece of reality from its totality, just as my mother used to spoon off the risen cream from the unpasteurized milk we’d buy or barter from our dairy farmer neighbors in rural upstate New York. Like cream will do when left out too long, though, my partial truth has curdled.

I can’t write. It’s not just that I lack the will; it’s not just that I’m feeling glum. I can’t. I am too sick. Last week, on one of my “good weeks,” those seven precious days that recur only twice a month on my current regimen of getting chemotherapy in the hope of curing my disease, I had a “relapse.” I literally fell over in my bedroom on a bright summer afternoon, when the symptoms related to my neurosarcoidosis suddenly came back. I felt sucker punched (hell, I was sucker punched) as the vertigo returned; I watched the world spin in shiny whorls around me through eyes half-blinded by the searing headache I had lived with for nearly a year, but that was supposed to be gone (or at least going) by now. It was like I had survived a relationship with an abusive, drunken lover. I had left him, had even changed the locks, but suddenly he was back, smashing in a window and lunging for my throat, spewing his foamy breath over me. I ended up in the hospital for a few days. The head pain became so intense I couldn’t sleep, no matter how many narcotic pain killers I stuffed in my mouth, no matter how many times I pressed the little button on my morphine pump. The doctor couldn’t explain the sudden onslaught of all the symptoms that characterize my neurosarcoidosis. Perhaps I had overdone it the week before when I diligently cared for my son, Andrew, after his tonsillectomy; perhaps I had created a weird circular pain syndrome because I was tapering off pain killers; perhaps sleep deprivation played a role.

Whatever the cause of my relapse, all I could think was, “it’s back.” And for two days I wanted to die. For nearly twelve months, I have biweekly ingested poisons in search of a cure, poisons that make me feel sicker for the week after I get them then I ever did before I started on them. True, the chemo seems to have dispelled the worst of the vertigo and headache–but if those can recur at any moment (as they did last week), then where am I? I am left with the smashed glass from the broken window, the bruises from the drunken lover’s hands on my throat, the trepidation that I am no longer safe, no matter how many locks I put on the doors, how many boards I nail across the window.

A year ago, maybe six months ago, I might have shaken off what most people would probably think of as minor setback. Progress isn’t necessarily linear. Two steps forward, one step back; take life one day at a time; live in the moment. You’ve been improving so much in the past five months. You don’t want to go back to how things were before the chemo, right? Yeah, yeah, I know that song; I’ve been humming it for the past five years in chronic town.

But I’m too tired and too burned out to put this one backward step into any kind of perspective. My exhaustion isn’t entirely psychological in nature either. The drug regimen I have been following for the past year is startling for its brutality. The cytoxan (literally “cell killer”) suppresses my immune system’s function at its most basic level and leaves me feeling like I’ve simultaneously gotten a beating and contracted the world’s worst stomach flu. On top of that, I still get a monthly infusion of Remicade (whose side effects are less immediate than the chemo’s–I’m just at higher risk for contracting various cancers down the road) and I’m still on good old prednisone—a third immunosuppressant. With all this suppression of my immune system, I am almost constantly sick with a sinus infection or bronchitis—and then on powerful antibiotics that have their own host of side effects.

“Why,” I’m sure you’re thinking, “would anyone be idiotic enough to do all of that?” Good question. Lately, I ask it of myself more days than not. However, there is what passes in sarcoidosis circles as a theory behind my treatment plan. There’s hardly any data on drug protocols and their efficacy in fighting the kind of sarcoidosis I have—the chronic, systemic form of the disease that afflicts vital organs (in my case, my nervous system and my heart). There are some studies that have shown that my unholy trinity of immunosuppressants can knock out neurosarcoidosis. When the sarcoidosis guru I saw recommended it, I agreed. I know some readers vehemently oppose the theory behind and the practice of this treatment. But they weren’t in my shoes.

By last summer, when I began this regimen, I’d been trapped in bed for nine months—in constant severe pain. Walking to my bathroom was all I could manage. There were weeks I couldn’t navigate my way down the stairs to eat a meal with my family. I was ready for extreme measures, despite the future health risks. My then four-year old son was growing up with a mother he could only visit in her darkened room. If I wasn’t breathless from the head pain, I was loopy from pain killers. He’s five now, and although he tells me every other Tuesday, “I hate chemo, Mommy,” because I disappear for at least five days into nausea, vomiting, and tiredness so profound it feels as though I have been infused with barbiturates along with the cytoxan, I’m much more present in his life than I was before.

“So,” Viktor muses, “you’re saying it’s all worth it?”

No, I’m not.

“But your point seemed to be that on your ‘good’ weeks you are improving, yes?”

Right, I guess. I was having fewer headaches, less vertigo and less falling over, more clarity in my speech, more writing. But I am so deeply burned out—from drug infusions, from exhaustion, from my bones hurting from the sarcoidosis still inside them, from summoning up the energy to write, from putting the “what ifs” out of mind and focusing on each day, from being in the hospital.

“Why are you allowing yourself to descend into self-pity?” Viktor asks.

Because I’m incapable of staving it off. I thought I made the right choice when I signed on for chemotherapy. It likely was the right choice, but its cost is so high it frightens me. I was hospitalized six times this year before this most recent one, simply because the combination of toxic drugs to combat the sarcoidosis has eroded my intestinal system. My son is traumatized from my latest stay in the hospital. The onslaught of symptoms was so sudden that it made all of our heads spin. My husband, Jay, has the far-off look I would imagine a hostage has in his eyes after four days looking down the barrel of a gun.

“So what to do?” Viktor inquire.

I’m too tired to decide what to do. I have three more chemotherapy doses (six weeks) before I return to Cincinnati to be reassessed. I’ll have them–mostly because I’m too beaten down to think of another strategy. I am in many ways more incapacitated by both my disease and its treatments than I was a year ago.

“Ah,” says Viktor. “Truth.”

Yes, a painful one that turns inside me like a woodscrew entering bone.

“And the blog?”

I don’t know if I should shut it down, change its format, or keep plodding away on it.

“Ah,” says Viktor. “Another truth.”

Yes, another one.

After my session with Viktor, in which the whole ugly truth emerged, I should probably turn my decision about Chronic Town over to Sean. They say the truth will set you free. But it’s left me feeling empty and tired to my core. I don’t know if I will ever get well, if I will ever grasp the elusive remission from sarcoidosis that I have kept speaking of and holding on my tongue like a mint. My recent setback has dissolved the notion of being fully well—of having the capacity to write in this space, run around with Andrew, meet my husband for lunch, and never have to go for drug infusions and then recover from them—quickly as that mint would dwindle away.

Thanks, Viktor. Now go back to Slovakia.

On Thursday, my five-year old son, Andrew had his first (and hopefully his last) surgery. He’s been suffering from sleep apnea, as well as from constant upper respiratory infections. Like me, he just can’t seem to shake a cold. It’s no surprise that my sniffles need antibiotics immediately, given that my immune system is so purposefully beaten down from the various treatments I get for my sarcoidosis. But Andrew, who is otherwise healthy, should be able to overcome a bug without antibiotics. It turns out that both problems–the sleep disturbances and the persistent sickness–stemmed from his tonsils and adenoids. The ENT doctor we consulted in Missoula was adamant that Andrew needed them removed–sooner, rather than later.

So at 6:30 in the morning, we arrived at the surgery center in Missoula. It was odd for once not to be the patient. I wasn’t the one slipping on a hospital gown, being quizzed when was the last time I ate or drank, being given a sedative to relax me, or being told I would have an IV. For once, I wasn’t the one who slept under the hard shell of anesthesia while family waited in a sterile lobby, made even more institutional by its small attempts to seem homey. For once, I wasn’t the one who jolted awake after the operation, with a thick taste of plastic and chemicals in my lungs from tubes and anesthesia. For once, I wasn’t the one who came to consciousness in post-surgical pain, confused where I was. I wish it were me. I would have given anything to have that surgery instead of Andrew. I spent the forty-five minutes of his operation feeling like I would vomit from anxiety. I prayed for nothing bad–or even remotely unpleasant–to happen to my son. I felt powerless. Because I was powerless.

When Andrew first came out of surgery, he was sobbing from pain, disoriented, and thrashing. The nurses settled him into my arms. I could smell the blood in his mouth and that awful odor of anesthesia coming up from his lungs along with his cries. Together, Jay and I calmed him. The surgical center had a kids’ room for recovery, where Andrew got to pick a movie to watch. Rather than see something new, he chose “Cars,” an animated film about a racing car who learns to love others, that he has watched at least twenty times before. But seeing the familiar scenes of Lightning McQueen and hearing Jay and I patter on about how brave and wonderful he was being calmed him. He sipped ice water, ate three popsicles, and told us, “Having my tonsils taken out is a lot less fun than I imagined.”

Jay and I weren’t lying to him. Andrew has indeed been brave and wonderful. He deals remarkably well with pain. In fact, the liquid pain killers taste so vile that he usually chooses to eschew them. We’re fine with that, as long as he keeps hydrated. As far as surgeries go, this one was pretty darn smooth. (I’m knocking on my desk right now so I won’t jinx the next week of recovery.) The doctor and the nurses were used to having kids in for tonsillectomies. They spoke to Andrew at his level, were honest with him about what would happen (without sounding dire or threatening), and made sure to listen to his questions and account for his needs. During the surgery, the doctor discovered that his adenoids were infected and filled with pus–and this is when Andrew felt healthy–and said that Andrew’s tonsils were so large that they were indeed impeding his airway at night.

I have taken pride in being healthy enough now (during an “off” chemo week) to care for my son. I am relieved the surgery is done and that it seems as though the upheaval and anxiety it caused in Andrew’s life are worthwhile. But I have lain awake most nights next to my son, watching his chest rise and fall, and catching his small hand with every twitch in his sleep. This is what it is like to be the caregiver–not the patient. I suppose this is the pain that Jay and my parents and Andrew experience with every surgery I undergo. This terrible helplessness, this all-consuming worry, this sense of needing to do something to help my child (which usually results in me rearranging the blankets and his pillows and adding fresh ice to his water glass every five minutes) is new for me. I prefer the other side–being the patient–instead of feeling my love for Andrew rise like a tsunami in my throat and realize that this love alone cannot protect him from germs and knives. But it is all that I have to offer. So I let it flow out of me and hope it covers him like a blanket.

I’ve dropped from cyberspace because I’ve been the human equivalent of the ball in a ping pong game of health and sickness. I’m not complaining. For the first time in months—well, years—I’m bouncing into periods of relatively good health. Then, when the chemo gets a chance to deliver a serve, it’s usually an ace, and I spend a week rather abysmally in the land of feeling lousy.

Here’s a brief synopsis. After six-plus months, my difficult drug regimen (of chemotherapy–Cytoxan to be precise–prednisone, and Remicade) is finally beginning to pay off. For the first time since the sarcoidosis moved into my brain in 2007, I have been able to write for more than twenty minutes at a stretch. Last weekend, I spent four consecutive hours working on a writing project. Not only am I able to produce words, I’m also able to devour them. More and more, I’m able to read, which is like reuniting with my first love (lost for these many months). Books. Magazines. The daily newspaper. Words everywhere, enticing me to slip into another reality, into someone else’s story besides my own overly-medicalized and often dull one.

I’ve also regained my driving privileges, as long as I’m not having a vertigo episode, am not taking any medications that might make me loopy, and if the distance is short and the route familiar. Best yet is my increasing capacity to be the kind of mother to Andrew I’d like to be. I’m now able to read to him from chapter books; we draw together. A few days ago, we hiked up the steep hill behind our house. Although I sounded like a steam engine that should have been retired from use a few decades ago, I made it to the top—all while keeping up a narrative for Andrew about the two of us being medieval knights, scaling the terrifying–and heretofore unsummitted–“Dragon Mountain.” We were in search of these mythical beings. Luckily, the dragons we found were a mother/kid duo, and they were quite friendly. They weren’t even prone to fire-breathing (unless provoked) and were eager to join forces with us against the tyrants in the next valley over. So not only was I able to walk (at a sharp incline), I was able to use the story-telling part of my brain, which has too often been fogged with disease or drugs for the last couple of years.

I sometimes wake up now with energy and a sense of purpose. My vertigo/mind-splitting headaches don’t descend on me nearly as often (though the one I got yesterday trying to finish this post was a doozy). Days now pass between these episodes. I notice the house around me. I consider it a sign of progress that my family’s inevitable build-up of clutter thoroughly vexes me. I even catch myself re-washing the counters after Jay’s done the dishes. This is classic (and, I’m sure, very annoying) pre-2007 Rebecca behavior. I’m noticing the garden that Andrew planted with Connie, our in-home teacher and all-around life-saver. I worry about whether I’m watering it enough, or too much. A few months ago, I would have been too afraid to walk back to the garden area because of the unsteady walkway—and my unsteady gait. I see the weeds everywhere in our yard. Should I spend a day with the weed whacker? In addition to re-engaging with my home, I am beginning to do the same with friends, whose e-mails and calls and concern I have too often left unanswered because of bad health days or a general sense of being overwhelmed. But now, I feel like seeing friends. I’m returning e-mails with only a week or two of delay. On Sunday morning, I rise early with Andrew while Jay is off running dozens of miles in training for his November marathon. We make pancakes, read books, and tell stories.

In fact, it is my newfound wellness that has kept me from writing more than any other aspect of my life. With some energy, a day without a headache, and a thousand projects deferred, I am scattered and unfocused. Should I finally clean our truly horrid shower? Or work on my book project? Or write up my essay proposal for a magazine? Or cook dinner? Or visit with a friend? Or organize Andrew’s toy closet (also known as the “zone of death” to those who open the door without first being prepped for a deluge of hockey sticks, five massive bins of Legos, and seven thousand board games to come crashing on their heads)? Sometimes on “good” days, I expend more energy spinning from potential task to possible activity than on actually accomplishing something—like an entry for Chronic Town or a book chapter. Hence my silence online.

I should, however, reveal the other side of the ping pong game. Every other week is now known as “Mommy’s Chemo Week” to my family, and it isn’t fun—for any of us. Andrew loses the mother he remembers, the busy woman who actually smiles and has the time and energy to put him to bed, play endless games of Sorry with him, give him a bath, and talk to him about kindergarten and his upcoming tonsillectomy (now deferred for a couple more weeks because of a late spring cold he picked up). I think it is extra hard for him now that the real me has been resurfacing every other week. Jay loses his wife—a partner who shares meals with him, asks him questions about his day, shares some childcare responsibility, and tantalizes him with prospect of becoming well enough to travel, hike, and return our lives to the hemisphere of the normal. And I go through an unpleasant week and in the process lose every bit of my positive attitude about my emerging health. I fall into a deep, dark interior place, where I am sure that chemo will never end, that everyone loathes me for malingering, that the chemo will stop working, and that I won’t survive the week.

The kind and knowledgeable oncologist who oversees the administration of my Cytoxan warned me that drug’s effect were cumulative. In other words, the toxic crap is building up in my body. Every dose is a little harder, and lasts a little longer. For the first three days, I mainly deal with nausea and vomiting. I have medications that help a little, but I seem particularly prone to these symptoms. Even with the anti-nausea medications in my system, I routinely greet each of the first three or four post-chemo days with vomiting—even if it’s simply dry heaving. Try as hard as I can, I get dehydrated every week. If I drink gallons of water, I throw up gallons of water. By Thursday (I get chemo on Tuesdays), I’m dehydrated and sick enough that I have to go back in to the Cancer Treatment Center (CTC) for a couple liters of intravenous fluids and another round of intravenous anti-emetics (which work much better than pills). Friday is what I call a ledge day. I teeter between either needing more fluids (and perhaps having to “go in,” which is CTC speak for getting wheeled upstairs and getting admitted to the hospital) or getting over the hump. Usually it’s the latter. When I’ve recovered from the nausea and vomiting enough to notice the rest of my body, I despair at my fatigue. I sleep sixteen hours a day, and awake exhausted. I’ll drink some water, swallow some medication, and immediately fall asleep again. During my post-chemo weekend, I do nothing but sleep. It’s demoralizing. I’ll try to listen to a book on my iPod, but I usually manage only a few minutes before slipping back under the great grey veil of sleep. I’ll try to watch television with Jay, but I’m usually out before the opening credits have streamed by on the screen. I’ll try and be a good mother to Andrew. But the food smells involved in coming down for dinner make me head for the closest toilet. I’ll ask him to snuggle in bed with me and read, but turning the book pages begins to feel like a weight-lifting session. Before long, the words are dancing and spinning in front of my eyes. I now understand those sailors in Odysseus, who succumb to the sirens’ song and fall asleep at the helm. “Mooooommmy,” Andrew’s sharp and disapproving voice cuts through my own sirens’ tunes. “Wake up.” Not happening.

What concerns me more than my dehydration and my fatigue is my outlook. I wish I had a better attitude. I spend my post-chemo days alternating between inner drill sergeant and inner care-giver. I try to compare my chemo regimen with the training I used to do as a competitive cyclist. I tell myself I’m at mile 70 of a 100-mile race. I have six more long climbs, I tell myself, and a pack of women only a mile behind me, so suck it up and finish the race—with style. Or, I’ll think of the long back-country hiking trips Jay and I did a few years ago. I kept walking for at least twenty miles a day with a heavy pack on my back. Climb up to the campsite, I admonish myself. Surely, this is similar. The sports analogies haven’t worked yet. I want to quit and kvetch. So, I say positive affirmations. And I listen to positive affirmations on my iPod. These soothing soundtracks of healing words set to new age chimes and bells usually put me to sleep in five minutes. Awake again, I visualize myself in perfect health. I remind myself that I am getting well. I tell myself that my body needs to sleep, needs to vomit in order to process the medicines that will put me into remission. Then, I lecture myself on my outlook. I order myself to gut this out—only 6 more of the every-other week doses before I get re-evaluated and maybe drop to once every three weeks and then once every month and then—hopefully—once every never. “What the hell is wrong with you?” says the inner me that sounds uncannily like the sergeant in Full Metal Jacket: “Are you quitting on me? Well, are you? Then quit, you slimy fucking walrus-looking piece of shit! What is your major malfunction Private Stanfel?” When this fails to sustain me (gee, what a shock), I pray. I hold my thinking rock that I’ve used for concentration (usually in writing) ever since I found it on a New Zealand beach on a brilliantly sunny day eight years ago. I work Buddhist prayer beads and a rosary. I say Jewish prayers, Catholic prayers, and Buddhist mantras. And still, still, my chemo week ends with me feeling utterly destroyed—physically, emotionally, and spiritually. I get angry with myself. I have so much to be thankful for. I used to be known for my toughness. And now, I can’t take a little puking and fatigue? I’m so depressed and exhausted by the psychological warfare in my mind and the physical toll of the drugs that I feel too ashamed and too tired to talk to family or friends that call. I can’t express myself to Jay, so I leave half my life unexplained to him. Better to be alone with this I decide, than to allow good people to descend from the sunshine of the world into my dungeon of dark thoughts, shadows, and spiders.

By Monday—six days after chemo—I usually feel like sleeping for only thirteen hours. I force myself out of bed and marvel at the world around me. The poppies have exploded into life in our yard. I stumble to the back yard and find Connie’s garden. Somehow, the pea, bean, pumpkin, and other vegetable seeds have sprouted. Miraculously, they have converted water and air into living matter. The crab apple tree is heavy with blossoms. How did this happen? Just a few days ago, it looked dead, its branches denuded and lifeless. By the next day, Tuesday, I can once again appreciate the miracle that is taking place within me. Somehow, drugs so poisonous that the pharmacy staff handles them only with double layers of rubber gloves are curing me. I begin to feel alive again. I banish my depression and start bouncing from task to task during these six glorious days of returning health. Like the carrot seeds in the garden, I am slowly and determinedly pushing my way out of the compost and dirt and towards the light.

As the week progresses, I can feel the dread of my upcoming chemo stirring in my body like storm clouds heavy with rain massing on the horizon. I push the thoughts away, but my body senses the coming storm and by Monday, I feel heavy and weighted down with the knowledge of the next day’s treatment. You wouldn’t know any of this by looking at me or talking with me. I try, at all costs, to keep a positive attitude. The nurses at the CTC admire my good outlook. Friends think I am cheerfully counting down the every-other week chemo schedule like I’m a kid at school, checking off the weeks until summer vacation. And I am hopeful and cheerful—mostly. I keep a gratitude journal to remind me of all the positive things and people in my life. My list is long. And constant reminders of my many blessings surround me each day. Andrew is healthy and happy. The last time I got chemo, the chair next to me was occupied by a three-year old boy with cancer (he even had a port in his chest like mine to make intravenous drugs easy to administer). We have health insurance; Jay has work; our combined families help us out in myriad ways. We have good food on the table, friends at the ready if we need them. And, I am getting better.

On reflection—when I am neither being catapulted from the “health” side of the ping pong table to the “illness” side—I can understand my mood swings. The very fact that I dwell in two radically different worlds, that I am indeed catapulted from one side to the other, is discombobulating. And when I give myself some credit, I can recognize that chemo is physically difficult. Nearly a year of receiving these drugs has taken a toll on me. Expecting myself to chirp out hopeful sentiments is a high bar to clear when I am puking my guts up. Finally, there’s the fact that I have been fighting this disease for five years—taking a pharmacy’s worth of pills (many of them unpleasant) to curb the sarcoidosis’ spread. I am not a fresh recruit with extra energy going into battle against this disease with all my resources. I’m now a grizzled veteran on stop-loss orders with no certain discharge date. I started chemo exhausted, unable to walk steadily across my room, with the disease attacking a new organ or system every few months. It’s as if I started that bike race I visualize during chemo weeks after already riding five hundred miles.

I am tired. But I can do this. I think of the garden, of the seedlings growing taller and stronger, following the sun. I’m not sure what kind of attitude those plants have. Who knows if they are always joyful in their arduous process of coming to life of pushing out of their own dark caves? But coming to life they are. And that is what counts.

It is three o’clock in the morning. I am typing as quietly as I can, since my husband Jay is snoring softly in the hotel bed a few feet from the desk, and my five-year old son, Andrew is snoring loudly from the unexpected second bedroom that is his space for our mini-vacation in Ennis, Montana.

Vacation? Hotel rooms? Family travel? If you’ve been reading my recent posts to Chronic Town you’ve likely gotten the idea that I am much more likely to be found in my own bed, either recovering from a twice monthly dose of chemotherapy (specifically Cytoxan) to treat my systemic sarcoidosis (particularly the neurological manifestation of the disease) or plagued by gastrointestinal issues that not only cause me tremendous pain (hence my unwanted night owl-dom) but also make traveling a few seconds beyond the reach of a toilet a risky proposition. But here I am, surrounded by snores in a strange room. I am happy to away from the routines of illness I have too quickly fallen into at home.

Truthfully, I’m surprised to be on this trip—my first family outing in well over a year. Of course, I’ve driven across town a few times with Jay and Andrew, but ever since I developed neurosarcoidosis back in November of 2007, I hadn’t—until yesterday—successfully spent more than about twenty minutes in a car. Some vile alchemy of motion acting on the inflamed parts of my brain and cranial nerves made car travel a trial at best. In the car, the worst of my neuroscaroidosis symptoms became severe enough that it seemed they should have left me alone and simply occupied the spare passenger seat. My vertigo intensified to the point that a few months ago, after driving about ninety minutes to see a doctor in Missoula, I opened the car door only to promptly fall over. My sarcoidosis-related vertigo must be a bit shy, because whenever it turns up, it also brings its best friend, the headache that I’ve nicknamed my “stroke headache” because it’s how I envision it must feel to have a blood clot burst in one’s brain. But yesterday, I didn’t even remotely encounter the evil neurological twins. I emerged from the car in Ennis looking and feeling like a normal person.

Well, mostly normal. I was also coming off one of the worst weeks of chemo I’ve ever had. Usually, the most unpleasant side effects of the Cytoxan—the constant nausea, the occasional vomiting, the fatigue that feels like radioactive worms have moved into my bones and sucked out very bit of energy and left me so tired that taking a shower is a hard day’s work—take a day or so to arrive. This past dose, though, hit me almost immediately, and it was fiercer and longer-lasting than any preceding it. When I feel so wretched and exhausted that the idea of opening the pill bottle containing my beloved Zofran (an anti-emetic) doesn’t seem worth the effort, I fall into what I imagine a prehistoric tar pit must have seemed to the dinosaurs that got trapped in them, leaving behind their well-preserved bones for paleontologists to reconstruct. Maybe the stuck dinosaurs felt as I did: depressed, hopeless, angry, self-pitying and self-centered to the point of unattractiveness. You know—generally pretty goopy.

Last week—maybe because my gastrointestinal problems don’t have the courtesy to abate while I’m laid low by chemo—I had what felt like a total emotional collapse. In the throes of this, I decided to stop the chemo immediately. And while I was at it, I thought to myself, I’ll stop the Remicade (the other infusion drug I take to suppresses TNF, the inflammatory agent of the immune system). I told no one of my plans, because speaking to anyone was too thoroughly enervating, and anyway, talking might make me feel better about my situation—and my self-pitying side wanted only to reflect obsessively on the sheer terribleness of my life. None of this pharmaceutical shit was making me better, I decided. In fact, the chemo made me worse. To hell with it. I wouldn’t even bother to explain myself to the kind doctors who have overseen my chemo and Remicade. Since no one seemed able to explain (let alone fix) my gastrointestinal disaster, I would return the courtesy and simply stop showing up for “treatment.” Treatment, hah!

Luckily, my tiredness lifted a little. Even better, my self-absorbed drama queen act no longer felt palatable. The thought of packing a suitcase no longer felt like scaling the slopes of a sheer cliff, and I figured that I could have a stomach ache and constant diarrhea just as well out of town as I could in my own house. I packed our stuff, crossed my fingers and toes that I wouldn’t end up reeling like a drunk somewhere between home and Ennis, and got into the car.

This was one of the smartest decisions I’ve ever made. Turns out that—at least in this instance—the old cliché about a change of scene doing wonders for one’s outlook is true. First of all, I have realized that the pharmaceutical shit I was hell-bent on stopping is actually helping my neurosarcoidosis. Not only was I able to travel by car for two hours with nary an unpleasant symptom, but I have been able to do things with my son and my husband. A few months ago, I couldn’t have walked around the block a few times. But today, we went to nearby Virginia City, a “living ghost town” (in the guide book’s parlance), and I spent hours on my feet exploring the old buildings, examining exhibits in the museum, and most importantly, engaging in a day-long pretend-fest with Andrew.

My son’s been taken with the idea of “bad cowboys” ever since he has spent two extended visits on my parents’ ranch and learned about the cattle-rustling Kilby brothers. He loves shooting cap guns on their remote land and learning one of the not-so-pretty side of Western settlement. Hearing me read in the guidebook about the vicious “road agents” who murdered and stole in Bannack and Virginia City (respectively the sites of the first and second significant gold strikes—and territorial capitols—of Montana), and then the vigilante posse who hunted down and hung the thugs (including Bannack’s sheriff), before succumbing to human nature and becoming a thuggish lot themselves, rekindled Andrew’s fascination with Western violence. All day long, we pretended to be the bad guys, as we roamed the nearly abandoned town. I would have thought my boy would have wanted to represent the forces of justice and moral uprightness. I assumed we would pretend to be the guys in the white cowboy hats (to use the lexicon of the old western movies and shows he’s also learned to love from his Grandma and Grandpa S.). But, no, we were pretending to be a band of brigands—the road agents. And not just any old common murdering and plundering road agents. Andrew was the worst of the worst for the day. He was Henry Plummer, the sheriff of Bannack, and leader of the vicious pack. He was the duplicitous, decidedly black-hatted character who begs to star in a Lone Ranger episode, pretending, as he did to represent the law, but was instead its enemy. Jay was “Clubfoot” George, one of Plummer’s henchmen (whose actual clubfoot is ghoulishly preserved and displayed in one of Virgina City’s two museums). And I was Charlie Banks, a lesser-known thug, but one who was still nonetheless hung by the Vigilantes. Our pretending was of a fairly mild sort, and mostly involved cackling outside any building we were about to enter and plotting to steal its gold. We talked in odd, pseudo-Southern accents that didn’t have any historical context, but somehow fit the mood.

Our day of mock banditry and fresh air worked a magic on Andrew, Jay, and me. Andrew was determined to hold my hand for most of the day, but he seemed less anxious that I might slip off and disappear for a few days (not a wholly unrealistic fear, since I do get swallowed by my bed every other week for chemo). Jay was cheerful, and kept repeating how great it was to “see new things together.” For the first time in a long time, I think, we each felt normal and we felt normal together. We were just another family succumbing to the lure of trinket shops; we were just another family wandering through a tourist-trap of a town, losing ourselves in the bloody history of its past. We were just another set of parents eating hamburgers and french fries and lecturing our kid on his table manners in a restaurant. The only drama was Andrew’s tantrum about his lollipop purchased at the “old time” candy store in Virginia City and the devilish (but historically-sourced) plots we formulated in front of the town’s storefronts. I wasn’t melodramatically renouncing my treatments; we weren’t having to deal with the drama of me being in the hospital; and until tonight, when my digestive system thoroughly renounced the hamburger and fries that constituted dinner, I forgot the drama of my stomach and simply took pain pills, wore Depends, and sprinted to various public restrooms.

Even though it snowed tonight in Ennis, we could tell that spring was coming. The surrounding fields are turning green, and they are speckled with calves and lambs, which look like little dots next to their mothers. We could sense the coming warmth in our skin. All of us could also sense a turning inside me. I am getting well. True, the cure is making me sicker in the short term, but I am getting well. 48 hours away and four cumulative hours in the car might seem like a small step to take. But for us, it was enormous. Bigger, even, than the hanging of Henry Plummer.

After our big day in Virginia City, we had another. On our way home, we stopped by the Madison Buffalo Jump (a cliff where various Native American tribes, in the days before they had horses, used to stampede herds of buffalo off a precipice so they could harvest meat, skin bones and organs at the bottom). The three of us (including me, the woman, who was falling over between the bed and the toilet a few months ago), climbed a mile and a half up the steep cliff and then a mile and a half down. Fortunately, Andrew deigned to stop pretending to be a road agent on our hike, and instead we took on the personae of Blackfeet hunters. Andrew was Crow Dog; Jay was Many Kills; and I (again) got stuck with the most boring name—Black Crow. But boring is just fine with me right now.

Postscript: I won’t claim that our adventure didn’t take its toll. Since our return, I’ve had a worsening of my intestinal problems and fatigue. I spent five hours at the infusion center today getting fluids and more IV prednisone. But, like boring, I’ll take it.

I hate to go silent, but I also hate feeling as if I need to write a 2,500 word essay interpreting life with a chronic illness and a kid– especially when that chronic illness has me flat on my back and wondering what my purpose is in life. This means you unfortunate readers get a new, shorter–and gloomier, far less “interpretive” update. Welcome to the underbelly of my mind. For instance, when contemplating my life’s purpose (when I’m too tired to lift my arms to brush my hair and have been so sick from treatment that rolling over in bed makes me vomit), I’ve been thinking that I exist to sell toilet cleaning agents. My disease–or maybe the treatment of my disease–gives meaning to Mr. Clean’s bald head. Wow. Now I feel better.

It’s been a rough couple of weeks since returning from my “no news is probably good news” trip to the Mayo Clinic in Minnesota. My gastrointestinal tract took issue with travel, stress, drugs, and perhaps with the sarcoidosis that may or may not live in live in it, depending on which doctor you poll at that moment. I’ve had a few of the worst days of my life, in terms of stomach pain, though I did set a “personal best” world record in the number of bowel movements I could have in a twelve hour span (twenty-one!) and the number of minutes it took Imodium to make its way from my mouth to the toilet (five! with the tablets’ color still shining up at me, almost as brightly as Mr. Clean’s golden hoop). The only thing that stopped this waterfall of badness was yet another massive IV injection of prednisone. So now I wait for local doctors to contact Mayo doctors to figure out What does it mean that prednisone improves my gastrointestinal inner circle of hell? Since everyone with an MD affixed after their name has informed me that prednisone cannot treat any type of irritable bowel syndrome, I am perplexed, to say the least, as to what this means in terms of my new diagnosis of irritable bowel syndrome. Maybe, the prednisone’s efficacy was a coincidence? Maybe my new and exciting fevers are a coincidence too? Who knows? I’ll take all theories.

Being unable to stray more than four feet from a toilet (and this with “adult diapers”) hasn’t done wonders for my mental health. I came home ready and fired up to write (my blog and my book) and to spend good, quality Mommy time with Andrew, who I desperately missed. Instead, I spent the week in bed, contemplating the number of cobwebs on our ceiling, as well as the number of times I told Andrew that “No,” I wasn’t up for walking, playing a game, putting him bed, giving him a bath, fill in the blank. Then, since my fever subsided for two days, I was eligible for chemo on Tuesday. Back in bed. Back examining ceiling. Back wondering whether Mr. Clean’s head can really be that shiny.

I’m still in Rochester, Minnesota, in a hotel across the street from at the Mayo Clinic. Tomorrow afternoon my husband Jay and I get to go home after nine days of me being poked, prodded, scanned, scoped, and questioned. It’s been worth it, though. For once, after making a pilgrimage to a major medical site, I am leaving with news. Now before you–or I, for that matter–think that I have definitive information on all fronts, don’t get your hopes up. We are, after all, still dealing with sarcoidosis, which can be maddeningly mysterious in its presentation.

Still, I am thrilled–and, dare I say, hopeful?–with what I’ve learned. I’ll start with my heart, one of the two critical organs involved in my latest sarcoidosis adventures. As some of you might remember, my local physicians in Helena were growing concerned that, after a three-year hiatus, the disease might have become active again in my heart. This was a terrifying prospect given the battery of drugs that I’ve been on trying to beat back the disease and the fact that it doesn’t seem like there’s a whole lot more out there to throw at this thing. Indeed, I’ve been worried about keeling over from a heart attack, or having some weird sort of heart failure kill me more slowly, all while the doctors remain powerless to do anything to help me. So the Mayo doctors ran a cardiac MRI and an echocardiogram to see if there’d been a recurrence of the conduction issues that had been my original cardiac problem in 2004 or if the right side of my heart had started to enlarge again after stabilizing for a few years. Turns out I can stop with the nail biting. The Mayo cardiologists found both my latest cardiac MRI and echo unchanged from 2006, when I had learned that the cardiac sarcoidosis was inactive. I am now exhaling.

I breathed another enormous sigh of relief after getting back the results from the MRI of my brain, with its special focus on my pituitary gland. For those of you new to my blog, I’ve been suffering (and I use that word deliberately) from neurosarcoidosis since the fall of 2007. After months of vertigo, debilitating headaches, and weird neurological episodes where I don’t speak entirely like myself and lose feeling on the left side of my face, I began to work with a sarcoidosis specialist in Cincinnati who started me on Cytoxan, a chemotherapy drug, to treat the disease in my head. I’ve been getting Cytoxan intravenously for several months, and the side effects are what you’d expect from chemo—nausea, vomiting, and chronic fatigue—though I’ve been lucky to keep my hair. While I haven’t felt cured or well since starting the chemo, I have had fewer headaches and much less vertigo. The Mayo brain scans confirmed my sense of improvement: the swelling in the area surrounding my pituitary is better. It’s nice to know that we can document the efficacy of my semi-monthly doses of poison. I was also relieved to learn that the pulmonary function tests done here show that my lungs remain virtually untouched by sarcoidosis. I’ve always found it a bit ironic that I’ve never actually had pulmonary problems from what is generally considered a lung disease—but I’m not complaining.

The results from the various cultures, biopsies, and scans performed on my digestive track were also encouraging. No evidence of celiac disease, Krohn’s disease, Whipple’s disease, or any sort of bizarre or random fungus, parasite or infection. Though here’s where things get a little fuzzy. Because I’ve been on prednisone for so long (and at high doses so recently), the biopsies aren’t entirely reliable, since the steroids can skew the biopsies. There’s also the question of whether this still might be GI sarcoidosis, since negative biopsy results can simply mean that you didn’t happen to snag a microscopic spot of granuloma from amid all the feet of intestine in which it could hide. Still, since the disease appears to be slammed into submission elsewhere in my body, the gastroenterologist thought it was much more likely that all the varied and strong drugs I’ve made my stomach and intestines endure over the past five years have caused a bad-ass case of irritable bowel disease. But, the gastroenterologist countered himself, that conclusion still doesn’t explain why the massive doses of corticosteroids I received during my last hospitalization has been the only attempted remedy that actually helped my stomach problem. However, I feel fortunate that none of the stomach testing showed anything nasty, like the cancer I had convinced myself I had. In any event, if it’s sarcoidosis in my intestines, there’s not much else I can take. Assuming it’s IBD (which is now the working theory), I’ll need to begin thoroughly tracking what I eat and finding any possible triggers for the pain and debilitating episodes of diarrhea.

Even if Mayo hadn’t given me good news (with a dash of nebulousness thrown in, just to make sure I remember what disease I’m dealing with), I’d still like the place. I’ve visited several medical centers in an effort to find the best possible treatment for my sarcoidosis. I don’t mind flying for good care. Hell, I’d fly to another country to seek advice if I thought that would help. (Actually, I’d love an excuse to fly to another country, but that’s a whole different issue.) While I’ve encountered brilliant individual doctors at different facilities (and I even followed one when she left National Jewish Hospital in Denver—one of the forerunners in sarcoidosis treatment and research—to another big medical center on the East Coast), I have yet to meet a team of physicians of the caliber I’ve encountered here. Even more impressive than their education and expertise in their respective fields is the fact that this team communicates among itself. Unlike many other doctors I’ve met (and boy, have I dealt with a platoon’s worth of white coats in the past five years), the Mayo “ethic” seems to stress communication and cooperation with each other (and, God forbid, the patient—unless you are that first cardiologist I saw here) rather than solo-ing it. In terms of medical models, Mayo conjures up images of a well-run mid-Western town, with every individual (from the lowly phlebotomist to the neurosurgeon) having their role. It’s a refreshing change from the totalitarian fiefdoms I’ve encountered in the past.

Jay and I can’t wait to get home and hug our five-year old boy, Andrew, who might evince a flicker of interest in our arrival. He has, after all, been spending the past ten days on his grandparents’ ranch, where he is spoiled in the best sense of that word (though I do think sometimes, “I never got to put canned whipped cream on my pancakes along with maple syrup when I was in their charge”). I can’t wait to share the good medical news I’ve received with Andrew, with our extended families, and with our friends. I’m a little scared about my stomach. But I’ll rest a little easier knowing the pain I’m experiencing isn’t coming from something ghastly. And the Mayo GI doctor was quite clear that if I worsen, if I can’t get control of this cycle of pain and diarrhea, I can—and should—come back and see him and get re-tested and re-evaluated. The best news, though, is that is appears that the sarcoidosis is in retreat. The last eight months of hellish chemo, combined with monthly infusions of Remicade, daily doses of prednisone, and, until last month, daily doses of Thalidomide have paid off. Every single marker for the disease points to it being inactive, being kicked in its granulomatous teeth by the medications and by my own body, which is actually fighting this disease. I am excited that the various specialists here, including the oncologist I saw today to get my biweekly dose of chemo, recommend that I eliminate one of the three big immune suppressants I am still on. I hope that Remicade can follow the Thalidomide.

I’m not planning on ending my relationship with my sarcoidosis guru in Ohio. I feel like I owe him my life. When I first saw him, I couldn’t walk across the room without feeling I was aboard one of Andrew’ imaginary pirate ships on choppy seas. While the regimen he put together is extremely difficult, it is working. Now I’m almost always certain I’m on dry ground. Plus, I am writing this, and I won’t suffer from motion-sickness after five minutes of looking at the words; I haven’t had a brutal headache in the past few days; and once I get the chemo out of my system, I know I’ll have the mental energy and capacity to play with Andrew. No amount of cooperation and collaboration can make me break a bond with someone who has helped me feel alive again. However, receiving Mayo’s confirmation of this is nothing short of amazing, given the five years of hell I feel like I’ve endured.

I plan to return to Mayo in June or July. I’d like to work with their pain management program; I’d like to meet their neurosarcoidosis specialist (there aren’t too many of those in the world); and I’d like to establish a patient relationship with their pulmonary department. If I have another gastrointestinal crisis, I will seriously consider flying here, rather than endure ever again the total chaos of our local hospital, where excellent local physicians can’t make contact with far-away specialists, and sometimes with each other. But that’s another story in itself. For today, I’m happy to know that, for once, all is as well as it can be with my body. That’s not saying I wouldn’t mind a little whipped cream on my pancakes.

From outside my hotel window, I can see the looming granite edifice of one of the four main buildings that comprise the Mayo Clinic.  Because my digestive system and heart continue to be troublesome, my doctors in Montana arranged for me see a gastroenterologist, a cardiologist, and any other –ologists deemed necessary here in Rochester, Minnesota.

My view of Mayo’s facade is impressive, as is the facility’s efficiency.  I’m used to making medical pilgrimages to hospitals that aren’t set up for out of town customers.  I’m used to having to fuss to get tests scheduled, to see appropriate specialists after seeing the main “expert” I’ve gone to see. It is quite the opposite at Mayo. I feel almost like a high school freshman, stumbling my around unfamiliar buildings with a horde of other new students. We clutch the helpful schedules that Mayo prints up for us. But instead of finding our way to lockers and the room for Algebra I, we make our way to Gonda Building, Ninth Floor, Desk 9 South or to the Hilton Building, Court Level, Desk C, also known as “Venipuncture Specimen Collection.” At the latter site, a helpful receptionist gives me what looks like a shopping bag from an upscale department store, inside which she places a labeled “specimen container” and proceeds to list all the “specimen” carts throughout the buildings where I can leave the bag when I’ve done my business. “Talk about discrete and well-planned,” my husband Jay said. He was right. The beige bag was totally opaque. If I didn’t have my own, I’d assume that the five hundred other people toting identical bags around with them had just gone shopping rather than being prepared to drop off warm loads of crap.

Mayo’s commitment to efficiency and to accommodating medical travelers is on display everywhere. My schedule of doctors’ visits and tests includes instructions on how to try to make appointments earlier, just in case the “first available” one they give you is after your flight home. As in airline travel, there is a procedure and a protocol. The printed schedule tells you what desk to appear at and how to make your request. It’s the medical equivalent of flying standby—looking for a cancellation instead of an open seat. Come to think of it, after dealing with surly flight attendants and chaotic airplane boarding, the airlines could learn a thing or two from Mayo—the inventors of the pneumatic tube system, we’ve learned. Rather than having to wait at one of Mayo’s desks, for instance, for a patient not to show up, the clinic will ring you on your cell phone if you pledge to make it there when told. (Of course that system won’t work if you camp out in the waiting room – Mayo’s commitment to efficiency is such that they simply block all interior cell phone traffic rather than having to go through the hassle of posting “Please Turn Off Your Phone” signs.) You can see the same type of organizational brain that conjured up the concept of sending tubes arcing through buildings behind Mayo’s giving you a pager when you check in to see the doctor; rather than bellow your name across a room and chance that you’ve wandered out of hearing to get a sip of water or use the restroom, you are paged.

The reality, though—no matter how many bells and whistles Mayo adds, no matter how easily they schedule me for tests and procedures ranging from a biopsy of my small bowel to a cardiac MRI to a simple EKG, no matter how thoroughly their managerial minds have streamlined every process—is that I am still seeing White Coats and still having my physical self violated in ways miniscule and significant. I am still a bit doctored out and tested out from my most recent stay in the hospital in Montana. I am tired of having cameras put in places unimaginable, tired of reciting the litany of events related to the past five years of sarcoidosis, tired of being cheerful and good-natured about stripping to be examined, rolling up my sleeve to have blood drawn, carting around my crap in a beige bag, and, later today, about swallowing a capsule endoscope and some other tools. I am, in short, simply tired.

I’m not stupid enough to think that I’m not lucky to be able to be seen here, or to not recognize that things could be a lot worse—hence my efforts to be cheerful and good-natured. But I’m also not stupid enough to be placated by the medical equivalent of bling. Even though the blood pressure machine in the cardiologist’s office was automated and fancy and took my blood pressure six times in a row to provide a more accurate, averaged reading, I still had to deal with the cardiologist—who was, quite frankly, an arrogant asshole who expected patients to be seen and not heard, unless and until he stared down from his metaphorical mountain where the doctor gods live and deigned to ask me a question. He is well-qualified and extremely competent, I am sure. I don’t doubt that he has ordered the proper tests and will read them accurately and make an accurate diagnosis of my heart. But I don’t like him. Equally well-qualified is the gastroenterologist, I am certain, who has a personality almost exactly the opposite of the cardiologist and who I liked a lot.

I have a week more of tests and appointments inside the well-oiled machine that is the Mayo Clinic. I know I will be all right, no matter if I have to spend more time with the jerk of a cardiologist, no matter if he or his colleagues order additional unpleasant testing, no matter if they discover something terrible, or discover nothing new at all (which will make me wonder if this whole adventure in Minnesota was a colossal waste of money and time, even if that time was finely managed). Having lived in Chronic Town for five years has prepared me well for Mayoville. Now, if you’ll excuse me, I need to consult my schedule and see what desk to show up at for my next appointment.

“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 (www.Rebecca-Stanfel.com) and a new blog address (chronicville.wordpress.com) 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.