Inching Forward

September 21, 2010 at 6:30 pm (Uncategorized)

Pardon my absence from this niche in cyberspace. As my steadfast readers know, whenever I have vanished from my blog in the past, it was usually because I was too sick to be able to write. I am happy—and grateful—to report that this time that wasn’t the case. I haven’t been miraculously, suddenly, or wholly cured of my chronic and systemic sarcoidosis. But I have been able to inch my way toward a more “normal” life. I’ve been able to play a more active role in my six-year old son Andrew’s life. I’ve been able to go out to eat with my husband, Jay. I’ve been able to cook dinner and do the dishes. It has been so fun—and also fairly exotic—to engage in the work of everyday life that I haven’t wanted to turn away from it.

The seeds of this healthier time grew from dark and seemingly toxic soil. I’ve been fighting sarcoidosis for six years. No matter how dutifully I followed the many doctors’ orders, I spent most of that time losing to my opponent—my own immune system gone haywire. Whatever immune suppressant the White Coats fired into me—ranging from prednisone to chemotherapy—seemed to do little more than annoy the disease that had coiled its tentacles throughout me. I endured two long and terrible years of biweekly chemotherapy to shake loose the disease’s grip from my brain and nervous system. After getting ten times the chemotherapy of the average cancer patient, I still managed several times to wind up in the hospital with unendurable pain, severe vertigo, and episodes of total blindness all brought about neurosarcoidosis.

However, maybe there is something to old AA adage that you have to hit bottom to start recovering. Those bleak February days, when my vision skipped on and off as though a demented toddler had taken command of the remote that controlled my sight and was pressing the power switch with sticky-fingered abandon certainly knocked me on my ass. I knew with a certainty and wisdom that emanated from every bone, muscle, and fiber of my being that I could not and would not continue to blast myself with the chemo. I limped my way to Ohio and told all this to the sarcoidosis expert who has managed my treatment from afar. He agreed that we should stop the chemo. But he encouraged me not to throw in the towel and give up on our search to find some medication that would stop—or, at least slow—the disease’s rampage through my body. I became one of the first sarcoidosis patients to try Rituxan—an infusion drug invented to treat lymphoma, but which has also proved effective against rheumatoid arthritis (another auto-immune disease that might be related to sarcoidosis.) My sarcoidosis expert was blunt as usual about how little he and other researchers actually understand about sarcoidosis. “We know B cells are involved in your body forming granulomas,” he said. “And we know that Rituxan suppresses B cells, and that in some sarcoidosis patients this makes some difference.” I was sick enough that the thought of even some difference, no matter how piddly, seemed worth the risk of taking yet another cancer drug.

Although I wanted to get better, I had lost all hope that any pill or potion would work. For my first few years in Chronic Town, I eagerly sought a cure. I researched, attended conferences, consulted with innumerable White Coated experts from the medical establishment, as well as with naturopaths and proponents of the Marshall Protocol who have an alternate theory on the cause and treatment of sarcoidosis. I prayed and accepted the prayers offered from friends and family. I wrote and read aloud affirmations about my body healing and recovering. I tried to stop the flow of anxious and negative thoughts that coursed through my brain. I swallowed the handfuls of pills the White Coats said would fight the disease. I consented to having a “port” surgically implanted in my chest so that I could get regular infusions of other drugs. I also swallowed handfuls of supplements the naturopath said would help fight the disease. I put myself on an anti-inflammatory diet to curb the disease process at the same time I cut calories to try to lose the eighty pounds I’d gained because of my medications’ side-effects, my lack of energy and exercise, and the months I spent almost entirely in bed. Mostly, though, I waited—to get well, to be cured, to wave sayonara to sickness and get back to living.

Yet all my research, clean eating, positive thinking, and pill taking didn’t seem to make an iota of difference to the sarcoidosis. I didn’t get cured. I got worse. And then worse, and then a little more worse, and then a lot more worse. So you should believe me when I say that I had absolutely no hope or expectation that the Rituxan would do anything that the prednisone, methotrexate, Enbrel, Remicade, Cytoxan, ginger and turmeric supplements, acupuncture, visualizations, and affirmations couldn’t do.

But it has. Or something has. Maybe it’s the combination of the new drug with the others. Maybe the sarcoidosis is burning itself down. Maybe the planets have finally aligned themselves properly. Whatever the reason, I am grateful. I don’t fully believe that any of the positive changes I’ve experienced will last. I am superstitious enough to almost believe that writing about feeling better will somehow jinx me and cause some sort of reversal.

My improvements aren’t at all like the total cure I once awaited (and, truth be told, still hope for). I am better in increments almost too small for others to notice. The pain in my head that has been a nearly constant reminder that I am sharing my nerves with sarcoidosis has eased—just a little, but it is enough for me to have cut back on the pain medicine I’ve relied on for four years by half. The vertigo that kept me bedbound for months has similarly retreated. I’m still not steady enough to drive—or, even on some days, to walk—but I feel less controlled by the violent twirling and surging. I’m still suffering from periodic blindness, but the episodes come less frequently. And when the pain and vertigo back off, I’m able to get up and function. I can unpack a few boxes in our new house, take short walks with Andrew after school, shop for groceries, and cook. Each activity in turn builds stamina and increases my strength in a delightful virtuous cycle. I have to be very careful, though, not to push myself beyond my very limited capacity. When I do, the sarcoidosis kicks up a fuss. Not only do my neurological symptoms worsen, but a nasty sarcoidosis rash flares up on my skin, my liver enzymes get out of whack, my joints swell, and I’m right back in bed.

I have no complaints, though. I’ll take these baby steps back toward health. Even at my creeping pace, I can still live so much more fully than I would have dared to dream a few months ago. Chronic Town has taught me many things—far more life lessons than I would have liked. Perhaps the most important one is this: live the life I have—not the life my peers are living, or the life I wish I could live, or even the life I think I should have. I now have the capacity to spend meaningful time with my young child and my husband of 13 years. I can be with them every day and in many ways now, instead of saving up my strength and pushing myself up and out of bed for a single extravagant gesture. This change is monumental and amazing. To be able to spend time with the people I love most is an extravagance of luck. I can sit with Andrew while he does his homework, watch Glee with Jay, wake up and do it all again. Would I appreciate being able to bake cookies with Andrew or talk about football with Jay if I hadn’t lost to disease the everyday family rhythms? I don’t know. I’d like to think that I would have relished the abundance of love in my life without first getting nearly killed by a disease. But, truthfully, before I got tossed into Chronic Town, I was awfully preoccupied with much more than the life I had waiting for me to live. I spent far too much effort on what I could, should, or might have. I also worry that I’ll lose my appreciation for the small wonders of everyday life when I’ve gotten accustomed to them once again. Will it take very long for the task of cooking dinner to start feeling like a lousy burden instead of a gift of great value? I hope not. Perhaps the looming specter of sarcoidosis returning with its full force will keep in touch with the magic and beauty of the here and now.

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September 6, 2010 at 1:35 pm (Uncategorized)

Pardon my absence. The last few months have been a blur of packing, sorting, and cleaning, of buying one house and selling another. The task of transporting three persons’ possessions a scant mile dominated our summer. We were lucky to have help. My parents packed over two hundred boxes. Friends helped us paint the bedrooms in our new house and cleaned our old house to make it presentable for an open house. In terms of the actual move, we could afford to hire professional movers to lug our furniture from house to house. Even with so much assistance, the move consumed me. I let my writing time dwindle away, and rarely ventured out to meet friends. Even my dreams—and nightmares—have been preoccupied with moving. I awake still tangled in the threads of dreams about broken boxes, demonic movers, and lost houses.

We needed to move. The blind spells and vertigo that characterize my neurosarcoidosis made our charming three-story house on Oakes Street dangerous. I spent hours isolated in my top-floor bedroom, too frightened to negotiate the steep flight of stairs down to the kitchen, or the second steep flight down to the home office I set up in the corner of the laundry room. So, when we found a lovely, light-filled home that would allow us to live on one level, we decided to make the move. Before we’d even listed our Oakes house for sale, we had made an offer to buy the new one. The next few weeks were a mad dash to whip our Oakes house into shape. We were incredibly fortunate to sell this house we loved—for very close to our asking price in one of the worst real estate markets in recent history.

Ironically, my quest to settle into a safer, healthier house ended up taxing me and most likely set back my recovery. Even with all the help we’ve had, there were enough tasks left over to keep me working beyond my capacity every day. I gave my all. I suppose the very fact that I was able obsessively to vacuum the stairs in the Oakes house for a showing, pack my share of boxes, paint a few walls, and stand all day long unpacking spices and tupperware into my new kitchen shelves is a sign of how much I’ve improved. Last summer, when I was still getting chemotherapy every other week and the sarcoidosis was roaring, I would have wound up in the hospital if I’d worked half so hard. I try to be grateful for the progress I’ve made when I collapse into bed at the end of a particularly hard day. My total exhaustion indicates my improvement, right? However, I know I will pay the price for having overdrawn my limited energy reserves. I am expecting a big crash when I run out of the adrenaline and anxiety that has sustained me so far. As it is now, every joint and bone aches, and my exhaustion cannot be sated by sleep. My neurological problems are worse, and my subcutaneous sarcoidosis has reappeared.

Still, I am glad we have made this move. The day after the moving truck brought our collection of mismatched—but quite heavy—furniture to the new house, Jay had to take a work trip to Arizona for a couple of days. I felt safe and secure in our new home, even when I was alone with Andrew. I didn’t have to worry about whether I’d fall down a flight of stairs with a particularly nasty spell of vertigo.

In the new house, I’ve also felt free from the unhappy associations that haunted me in the Oakes house. I no longer have to tiptoe over the spot where I landed after crashing down the stairs. I don’t have to sleep in the same alcove where I spent months trapped in bed with illness or with the after-effects of chemo. And I can leave behind the sense of nagging failure I felt at all the projects I couldn’t complete. I don’t have to face the overgrown garden, the disorganized pantry, or the toy closet from hell. “I’m so glad you are moving,” a friend told me. “That house is cursed.” Another friend told me that I could make a “fresh start” in our new house. It’s easy to slip into superstition. I had gotten a lot sicker after we moved to Oakes Street five years ago, and we’d had a patch of bad luck in that house—two car accidents and a plumbing disaster among others. I never went so far as my friend in thinking that the house brought us bad luck, but it often felt like the house was tainted with bad memories.

I don’t want to believe that our move will change our luck, that it will give us a new lease on life. This move from Oakes Street was my 26th. That’s an awful lot of packing and unpacking to do in 39 years. Along with the knowledge of how to pack fragile dishes so that they’ll never break, this kaleidoscope of houses has given me experience with the psychology of moves. Before I graduated from high school, I had moved six times with my family—from Colorado to Texas to Norway to New York to Louisiana to Alabama. Although I had vowed to myself that I’d be more settled when I was in charge of my own life, I ended up just as peripatetic as my parents. Before I married Jay—during those adult years when I was accountable only to myself— I often used the act of moving to a new apartment as a means to make a fresh start. Moving allowed me not only to jettison roommates I could no longer abide or a boyfriend I’d outgrown. In new rooms, I could become a new person—or, the same person with new habits. In a new apartment, I’d institute new routines and a new order. With my desk in a new room, I’d study to a more rigorous schedule. With my chipped dishes nestled in new kitchen cabinets, I’d cook healthier meals and eat at more regular hours. While I never liked the actual work of moving—the tedium of packing and unpacking, of sorting my essential possessions from the detritus I had accumulated—I loved the unfolding of my new life in a new space. Moving left me feeling sleek and streamlined. It felt like I’d given myself a fresh coat of paint.

I’m not sure precisely when I realized that the changes wrought by moving were at best short-lived and more probably wholly illusory. While I could off-load old magazines and tired clothes, I couldn’t ditch my emotional baggage with such ease. I was struggling with a depression too severe to be charmed away by a new address. I wasn’t ready or able to address this deep depression that often made it impossible for me to get out bed to go to school or to work. After the flurry of the latest move, the new me unraveled with surprising regularity back into the old me. Before too long—despite my resolutions and my new surroundings—I’d be procrastinating with my work, hiding from the world when the darkness rose within me, subsisting on Diet Coke and cheap take-out, and ignoring the dust buffaloes under the bed. No matter how many coats of creamy paint I layered over the walls of my psyche and character, the nicks, stains, and chips that I had hoped to erase were instead simply concealed.

With Jay as my partner, I was ready for new strategies. When we moved to Montana—and then bought our first home in Helena—I started experimenting with staying put. I discovered that with hard work and focus, I could enact some of the changes I had thought moving would magically bring. I chipped away at the glacier of depression with a self-imposed routine that I’d later learn was akin to cognitive therapy. Instead of waiting for total transformation, I tried to make small changes and self improvements each day. I discovered that I could work and meet deadlines, that I could sustain friendships, and that I could function as an adult. The new patterns and habits I inculcated had more staying power than the sweeping resolutions I had sworn when flitted from place to place. Instead of spending my psychic capital on new paint for my interior walls, I invested in structural repairs to the places within myself that were deeply gouged or in danger of crumbling. For the first time in my life, I didn’t want to move. In a reversal so total I couldn’t fully grasp it, I felt like the good qualities I had nurtured were somehow dependent on this specific home in this specific town.

When Jay proposed that we move—and not just to a new house, but overseas— I worried that if I left our first house in Helena I’d also lose my new self. This thinking was just as magical as somehow believing that a new home meant I could be a new person, but I couldn’t shake my fears that once I cut the tethers that held me to this place, I would drift away from the good life I had built. The first few weeks in Palau—an archipelago of Pacific islands between Guam and the Philippines—were indeed difficult. With our move across the world, I had lost my routines of writing and exercise, as well as friendships that had anchored me during stormy times. I had so little trust in myself not to lose my capacity to find new work, build new relationships, and develop new routines. But that is exactly what I did. Using the same tools I’d developed in Helena in this strange tropical country, I carved out a life I loved. I came to feel as rooted to Palau as I had to Helena, and I sobbed on the plane that brought us back to the U.S. when our work contracts in Palau had expired. I wasn’t happy to leave the lush islands that had become my new home. However, I no longer feared that with this move back to the U.S. I would lose myself. I had finally figured out that who I was didn’t depend on where I lived.

I don’t want to forget this hard-earned lesson. Our old house didn’t cause me to be sick. I won’t magically reboot like some finicky computer. The same old me is unpacking in this clean, new house. And I actually miss the Oakes house. For every unhappy memory there—of tottering down the stairs or huddling under my pillows to try to get away from neurological pain in my head—I have three happy ones. It was in our Oakes house that Andrew grew from a baby to a first-grader. He learned to ride his bike in that driveway, take his first steps in that living room, and eat solid food in that kitchen. I don’t want to wipe the slate clean of these associations. I don’t want a fresh start apart from my husband and my son.

I do hope, of course, that our new home will be the place in which I finally kick sarcoidosis into remission, and where I’ll regain fitness, lose more weight, and reclaim my health. That would be nice. But there won’t be anything magical about it. Getting my health back will come one day at a time—if I’m lucky. And it will take hard work and patience.

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