Chronic Town

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.

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

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

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

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

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

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

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

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

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