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 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.