Medical Tourism – Day One

April 23, 2010 at 9:16 am (Uncategorized)

It’s late here in Ohio—two hours further into the night than my body’s internal clock. But the jump in time zones isn’t why I’m up late in the hotel room while Andrew and Jay snore in syncopation a few feet away from me. I’m tired too. Exhausted, actually. We had to get up at 4:30 this morning to catch the first of three airplanes that brought us here.

Flying discombobulates my body and mind under the best circumstances. Although I love the prospect of a trip—and I recognize how convenient it is to soar across the continent—I don’t like it. I know that domestic airline travel is statistically much safer than driving. Still, I don’t trust that the plane will stay aloft. I love to watch Andrew’s joy as the plane roars down the runway and then touches the sky. But I find it improbable that humans can slap together metal and plastic, douse this contraption with fuel, and then make it rise into the air. While Andrew seems to see only the mightiness of the plane at take-off, I feel the heaviness of gravity and the weight of the machine pulling it back to the ground.

Today was particularly unpleasant for a fearful flyer. Thunderstorms were roiling the air all across the west. It was intermittently bumpy from Helena to Salt Lake City, but on our Salt Lake City to Denver leg, it was too stormy to land. We learned later that a tornado touched down near Denver. So our little airplane had to circle outside the zone of danger for about an hour before we could land. Even Andrew—who flew from Seattle to Seoul with nary a burp—began to complain that his stomach was upset. As we dipped and rattled through the thick, grey air, I told myself we were not going to die—and then prayed that maybe my son could be spared if we crashed. I’m sure my typical melodramatic impulses were ratcheted up a few octaves by sleep deprivation. It was also tiring to keep pretending that I wasn’t terrified for so long. I do not want to pass along my irrational fears to Andrew, so I’ve always made myself unlock my jaw, prattle about the view outside the plane’s window, and smile. I can pull this off for the occasional precipitous drop in altitude, but not for an hour.

Our flight from Denver to Ohio wasn’t much smoother. But Andrew zoned out in front of a movie, which left me a chance to nap long enough to take my mind off the choppy ride. I was also grateful, and this improved my outlook. Even though we landed over an hour late in Denver, the airline had held our plane to Ohio for us. So much of air travel now feels like Greyhound bus trips that when I get such an extravagant reminder of the airlines’ old ways of doing business, I’m doubly shocked and pleased. Without this act of mercy—which inconvenienced dozens of other weary travelers—we would have been stuck in Denver until the storms blew clear and the traffic jams on the runways abated. Probably we wouldn’t have made it here until late at night. I would be even more strung out and edgy. Andrew’s problems couldn’t be eased, though. Just as we were making our final descent on our final flight, his queasiness swelled into air sickness. There were no barf bags in our row, so the poor kid just puked all over himself, me, and the carry-ons we’d jammed under our feet.

For the next hour—while I mopped us up as best as I could, while we trudged through the airport in vomit-soaked clothes, while we claimed our suitcases and found clean clothes, while I waited as Jay helped Drew change in the men’s bathroom, while we lugged our baggage onto the rental car shuttle, while we drove down the rush-hour freeway in search of our hotel—I came close to dissolving into tears, panic, and exhaustion. It’s not that I’m particularly averse to barf, rental car shuttles, freeways, or Mapquest directions. All that I can handle. It’s just that the long day of traveling collided with my anxiety about seeing the sarcoidosis expert on Friday with enough electricity and tumult to rival those Denver thunderstorms. I was exhausted from last week’s chemo. The vertigo, headache, and blind spells that characterize my neurosarcoidosis (and are the main reason I travel so far to get specialized medical care) came on so quickly it felt like Jay had flicked a demonic switch on my head. It was all too much, I thought. I can’t be sick and have to make such difficult journeys to try to get well. The whole enterprise is flawed by this perverse illogic. Why are those of us who are sickest with the most obscure diseases the people who have to go across continents for care? And then I began to fret over the nature of tomorrow’s appointment. My local doctor has made it clear that I need to find a sarcoidosis expert to replace this guy I’m seeing. I can continue to visit this doctor for my own edification, but my local doctor needs an expert that is a better communicator. I’m not planning on taking up my appointment tomorrow with these issues (after all, I’ve come a long way for an hour-long slot). But during that tenuous hour between Andrew’s barfing and arriving at the hotel, it felt impossible to get what I need from the doctor tomorrow—his ideas for my treatment for the next six months.

Once we arrived at the hotel, my mood cleared as quickly a tornado recedes back into the sky. We ordered Chinese food and ate it picnic-style on the hotel room floor. We rolled up mu shu pancakes and gobbled down steamed dumplings and talked about the great vacation we will have for all the hours I’m not seeing the doctor—167 vacation hours, 1 doctor hour, as we’re telling ourselves. While we made our way through Andrew’s bed-time routines, it dawned on me that the process of traveling to get care is a lot like the care itself. What I mean is that when it comes to chronic illness, you have to survive an overload of sturm und drang to get proper care. As I’ve written before, diagnosing and treating sarcoidosis isn’t remotely akin to doing the same for strep throat or a bladder infection. It is hard to get answers, to find the right doctor, to stay with that doctor—just like it’s hard to travel from Montana to Ohio with a young child on a stormy day. But we made it, just like I’ll make it through tomorrow’s appointment and get the answers I need.

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Why I Bother

April 21, 2010 at 11:27 pm (Uncategorized)

I’m just now clawing my way back to the surface of life after the round of chemo I got a week ago. I feel like I still have dirt under my nails and the smell of the grave on me from this now-familiar journey.

I’ve traveled this route so many times you’d think that after two years I’d no longer be shocked and appalled at how arduous it is to recover from the blast of chemo I’ve been getting every other week. But it has never failed to catch me off guard, no matter how much I’ve tried to prepare for the exhaustion and sickness that the chemo invariably triggers. Usually, though, I’ve been able to hold onto some type of faith that I’ll make it through the worst parts of the chemo cycle. As a rule, I forget how awful chemo is every time, but I don’t forget that I can survive it.

This past week was different. During what will be the last dose of chemo I get at this dose—unless my sarcoidosis expert presents astounding evidence to convince me otherwise when I see him on Friday—I lost hope that I would emerge intact. I’m usually a strong finisher. I could gut out the last few miles of a long bike race, no matter how much my legs and lungs burned. I finish writing projects on deadline, even if I have to stay up for consecutive days. But I did not finish this part of my chemo odyssey with similar panache.

I did not want to return to my life after last week’s dose. When I wasn’t asleep, I was thinking of all the tasks I didn’t want to face. My instinct was to renege on every promise I’ve made. Screw my pledge to write regularly for this blog—and with it my deadline of June 1 to have book chapters sent to my potential literary agent. I also longed to be left alone. I shuddered when Jay lay down next to me in bed. I hated the sound of my son’s voice. When Andrew came into my room to check on me, I could barely summon responses to his questions or his tales. It makes me feel sick and small to admit this. But that is how I was—sick and small inside myself.

My overwhelming sense of futility this past week went far beyond an ordinary case of what I call “the fuck its” (TFI, for future, less profane references). I’ve battled TFI aplenty—even before I had sarcoidosis and chemotherapy to contend with. When afflicted with TFI, I avoid work and piddle around on the Internet or undertake obscure cleaning or organizational projects. Instead of keeping my goals in mind, I’ll decide to edge away from them. With TFI, I’ll snack on chocolate instead of sticking to my diet; I’ll let Andrew watch a Scooby-Doo episode nine times in a row rather than summon up the energy to read him a book.

I’ve certainly had to face TFI much more since I started chemotherapy. It’s challenging to motivate yourself to write an essay or bake cookies with your kid when you’re so tired you’d give an arm for an extra day in bed. I’ve tried not to be too hard on myself because I struggle so often just to summon the wherewithal to rise from my bed and shower. I remind myself that I’m limited because of my circumstances. Like the rest of the universe, I am governed by forces of inertia and entropy. But I’m no math whiz. The highest and truest calculation I’ve devised is a simple sort of equation. Chemo=fatigue=less motivation=normal. If I relinquish this, I run into trouble. A particularly unhelpful revision of my fundamental equation is chemo=fatigue=less motivation=I’m worthless=let me enumerate the ways I am worthless=wow, I’m suddenly a lot more tired now.

What I felt last week wasn’t the silly procrastination of TFI. Nor was it my habitual crash into self-hatred. It was a terrible renunciation of all I hold dear. I was laid lower—physically, spiritually, and totally—than I ever imagined possible. At first, the chemo’s after-effects weren’t that unusual. I slept for three days straight, as I usually do. And, as always, I didn’t remember my dreams. I had my typical, creepy sense that these bottomless sleeps are warm-ups for death, that I was getting a sixteen hour preview of the oblivion that awaits me. I tried at first to shake this off, as I do every other week, to jostle myself into enough alertness that I could tell myself that sleepiness is a side-effect not a portent. But I couldn’t. More profoundly, I wouldn’t. I wanted instead to drop like a stone into the depthless waters of that sleep. Rather than reason with myself, I nearly reveled in the idea that I had stepped into a shadow land of death-in-life. The sarcoidosis and the chemo have eroded me to the point of irrelevance, I thought. It really didn’t matter whether I ever got out of bed. I was already disappearing from the house, from Jay’s life, from Andrew’s life. It would be easier for them—and for me and for everyone—just to finish this disappearing act once and for all. What was the point of lurching back into life, of crawling out of that loamy pit chemo and disease had dumped me into? Yes, I could re-insert myself into the empty space I’d left, like my foot instinctively finding its imprint in my shoe. But I could also choose to vacate that space. Let Jay give my shoes to Goodwill. Let him and Andrew move on and move forward. And let me get back to sleep.

I wasn’t having what mental-health professionals call “suicidal ideations.” It wasn’t as if I were plotting to swallow a bottle of pills. I was beyond and below all that. It almost cheapens my profound sense of wanting nothingness to toss psychiatric terminology at it. I wasn’t capable of planning my end. Instead, I thought I could bring it about—I could slip into never-ending oblivion—with nothing more than a semi-conscious thought. I could turn in my will, like an employee handing over my ID badge and office keys when moving on.

I’m still here, though. Not only did I stay alive, but I am sitting upright and writing. I have a monstrously long list of tasks to accomplish before I leave tomorrow with Jay and Andrew for Ohio. The washing machine is gurgling with a load of clothes I’ll need to fold and pack. I have compiled a list of questions for the sarcoidosis expert. I need his advice on what treatment plan I’ll follow for the next six months. I want to know about a clinical trial of a new drug that is showing good results in treating neurosarcoidosis. I’m also persisting in my search to find a new doctor who can advise my local physician more regularly than the Ohio expert. I ate a healthy lunch of brown rice, roasted vegetables, and a mixed berry smoothie that followed the guidelines of an anti-inflammatory (and hopefully sarcoidosis-busting) diet. I had a cup of tea with my friend Martha, and we talked about writing our books. I have set a deadline of June 1 for getting material to a potential agent. I even practiced the next song in my piano book when I needed to take a break.

What happened? How did I traverse from wanting to stop existing to living with as much energy as I can? For the sake of producing a tidy and meaningful essay—for the sake of what it would say about me, as a human being—I wish I could report that Andrew or Jay brought about an epiphany that made me want to go on fighting this damn disease and squeezing what I can from my limited life. But that didn’t happen. If anything, I’ve found my obligations to my son and husband nearly burdensome this week. It’s hard enough to get myself out of bed, and harder still when Andrew wants to spend every minute after school with me and Jay looks as tired as I feel from his week of solo-parenting while I suffered from chemo. I also can’t claim that friendship and kindness have gotten me out of the chemo pit. It helped me feel less alone to get e-mails from Martha and Molly during the week, to have Barb spontaneously volunteer to care for our cat when we’re gone, to have both my mother and Jay’s leave sweet and encouraging messages.

But I think I survived what I plan to be my last chemo week by nothing more romantic or soulful than naked stubbornness. I said I was going to make it through this round of chemo, so damn it, I will. I said I was going to post to this blog, so I will. I said I was going to beat this disease, so I will. I said I would write a book about my experiences, so I will. I said I would stay involved in Andrew’s life, so I will. I said I won’t let disease destroy my marriage, so I won’t. There is great power in habits. However much I chide myself for TFI, for gaining so much weight, for having such a hard time with chemo, I haven’t given myself over to the nullity of either self-loathing or disease. I haven’t finished my book, but I haven’t let go of it, either. I haven’t posted here as much as I’d like, but I haven’t thrown in the towel. I haven’t been kindergarten Mom of the year, but I haven’t stopped reading and writing with Andrew. The force of all the living I have made myself do—when I wanted nothing more than to give up—was strong enough to pull me back from the edge. It’s almost mind-boggling that every-day routines are what saved my soul last week. The fact that I’ve gotten into the habit of writing for this blog, that I made a commitment to it, got me thinking about what I could write for the next entry. That thinking pulled me out of the abyss. The idea for this essay propelled me out of bed this morning.

It’s so simple, and yet it is not—this process of making an existence on the precipice. Do what I have to do, what I want to do, what I planned to do, and what I’m already doing. That is my formula—my true equation.

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I Think I’m Still Alive (Hopefully)

April 15, 2010 at 1:49 pm (Uncategorized)

Yesterday I got what I hope is my last chemo infusion. (At the very least, it will be the last chemo infusion at that dose and frequency).

It was also my worst chemo ever. I started throwing up within hours (usually it takes a day. After sleeping seventeen hours, I drank water and had a bowl of cereal. Thirty minutes later, I promptly threw that up too. I think I’ll stick to liquids for the near future. I also have a fever, can’t stop shaking, and feel incredibly alone.

I had high hopes of spending part of today answering the generous comments some of you have posted and to finish and then post a “real” blog entry.

I’ll be staying under the covers and trying to sleep instead. Cytoxan builds in the body–its effects are cumulative. So I guess it makes sense I feel particularly awful today after so many of these infusions.

But it’s hard to hang on to reason when I feel really small and sick.

Please send me your thoughts and prayers to come out the other side of this nasty time.

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Better Sounds Good to Me

April 10, 2010 at 10:27 am (Uncategorized)

I’ve got to find a new doctor.

If only I could flip open the yellow pages and scroll through the list of specialties. I’d run my finger down the page, past “Obstetrics/Gynecology,” “Plastic Surgery,” “Podiatry,” “Pulmonolgy” and “Rheumatology” until I landed on “Sarcoidosis and Other Granulomatous Diseases.” Then I’d call one of the numbers listed and make an appointment. Wouldn’t that be nice?

Unfortunately, locating a sarcoidosis specialist is proving to be much more tedious, time-consuming, and frustrating than my yellow pages fantasy.

It’s not just that I live in small city where we’re lucky to have even a pulmonologist (the medical specialty that most frequently studies and treats sarcoidosis). There aren’t many doctors who know much about sarcoidosis, and even fewer who have made it their mission to treat us sarkies. There are several lists of sarcoidosis specialists floating around the Internet. I’ve found them and have begun to research these physicians.

After six years with a bad case of this disease that has moved into almost every organ in my body, I’ve learned more than I ever wanted about working with doctors who specialize in a relatively obscure disease. Turns out that finding someone who knows a lot about sarcoidosis and how to treat it is only the start of the process–not the end, as I used to think.

But after hitting unforeseen roadblocks with two stellar specialists, I’ve come to learn that expertise in the field isn’t the only factor to take into account. The doctor also has to ready, willing, and able to communicate and collaborate with other physicians. The expert has to convey a treatment plan to the local physician(s) who implement it. Then the sarcoidosis doctor has to be available to respond to questions from the local doctors when the patient has a relapse, new symptoms, or problems with the treatment plan. My current sarcoidosis specialist is tremendously bad at this. He’s been too busy or too clueless to answer dozens of phone calls and e-mails my local doctor has sent since I had a flare-up several weeks ago. I landed up in the local doctor’s hospital with new neurosarcoidosis symptoms, including episodes of temporary blindness. “What should I do to help this patient?” the local doc asked over and over. “Should I change the treatment plan? What tests should I order? Should I send her to see you? Should I send her somewhere else?” He got no response for over six weeks.

When the local doctor finally got a hold of the sarcoidosis expert, the expert was condescending and vague. Even though the expert is recognized as one of the princes in sarcoidosis land, even though he is conducting clinical trials with several new drugs that hold promise in fighting the disease, even though he has seen and treated the worst and most bizarre cases of the disease, I’ve got to find a new specialist. The local doctor is quite rightly furious. He told me that it scares him to be left “holding the bag” when I am delirious with neurological pain. “I don’t know much about your disease,” he said in our last appointment. “I need a new ‘general’ to lead us.” I understand the local doctor’s anger and frustration, as well as his unwillingness to have this specialist “in charge” of my care. No matter how many papers this specialist writes, and no matter how many new drugs he finds to treat sarcoidosis, it won’t make a bit of difference if I have a seizure related to my neurosarcoidosis and he isn’t available to help the local doctor save my life.

After my experiences with this hard-to-reach specialist, I’ve realized that when I’m looking for a new sarcoidosis expert, I have to evaluate expertise and availability. I need to find someone that will focus on my case outside the hour-long appointment I’m allotted every six months. But there’s even more to keep in mind during my hunt for a new specialist. Once again, I discovered a key component to quality care the hard way. Soon after I was diagnosed, I chose an expert who was highly-regarded in the field, attentive, kind, and a fantastic team player. (In fact—because my first exposure to long-distance medicine was with a doctor who answered every phone call from local doctors and every e-mail I sent within hours—I thought this was the norm and didn’t make communication skills a criteria in selecting my current, inaccessible expert.) But my first sarcoidosis doctor couldn’t offer what I’ll call institutional support. Because my disease involves different organs—my lungs, heart, lymph nodes, brain, bones, liver—and because my treatment has caused a host of problems—prednisone-induced diabetes, cataracts, and menopause, to name just a few—I frequently need to see other specialists who know something about sarcoidosis and can work with the sarcoidosis expert. It works the most smoothly when I can make one medical pilgrimage to one medical facility every six months. I can see the sarcoidosis expert, and this doctor can then order tests and make appointments with cardiologists, neurologists, or orthopedists during my time there. But, if the sarcoidosis expert is like my first specialist and is associated with a smaller hospital (or even a larger medical center that doesn’t accommodate out-of-town patients easily, say by allowing for last minute MRIs), chaos reigns. Who will oversee testing? Where will it take place? How do other much-needed specialists get selected and how will they be incorporated into the team? This is especially problematic for patients like me who live in smaller communities with a dearth of specialists. It isn’t reasonable for me to make multiple medical trips every year—to see the sarcoidosis doctor, and then to chase down specialists to tend to the damage sarcoidosis has wrought to various parts of my body.

It shouldn’t be this difficult. And it doesn’t need to be. In his fascinating book Better, about how to improve the quality of medical care in the US, Atul Gawande addresses this issue of the near impossibility of finding the best care for a given disease without going through a six-year learning process of getting sub-standard care first. The problem is that—with one exception—no organization (governmental or non-governmental) track the performance and outcomes of doctors and hospitals in treating specified diseases. I can’t go to a Web site or call an agency to find the best place to go for sarcoidosis treatment. The exception that Gawande discusses is the Cystic Fibrosis Foundation, which compiles an annual list of the best (and worst) facilities for cystic fibrosis care. This foundation collects data on patient population, treatment options, and outcomes, crunches the numbers, and then gets some answers. The catch is, that until Gawande came knocking, they wouldn’t their findings make public.

We all need information like this. It’s a matter of life and death. It’s time for medicine to shed its aura of magical inscrutability and the falsehood that all doctors are equally omniscient. The whole business currently carries a whiff of the medieval guild. But doctors and hospitals should be judged like the rest of us—not by the starchiness of their white coats but by their performance. Patient outcomes depend not just on the brilliance of specialists, but on the quality of the hospitals where they work and on their willingness to work as part of a team.

I’m hoping that the wrong decisions I made in the past will help guide me in finding a new specialist. But I wish it wasn’t so nerve-wracking to find a doctor and that the stakes weren’t so high. I’ve heard that the Center for Medicare and Medicaid Innovation (CMI)—which will be created by the new health care reform bill—will start compiling data on various diseases and ranking hospitals accordingly. When I tried to track down specific information on this, I learned that CMI will be empowered to test innovations and that this ranking is just one of a host of programs it might test. We’ll have to see what happens. In the meantime, maybe all of us sarkies in Chronic Town can start some innovating of our own. I like the thought of a sarcoidosis-related agency compiling a list of the best places to go for treatment—just like the Cystic Fibrosis Foundation did. Maybe then, my dream of finding a doc by doing no more research than flipping through a few pages will come true.

Until then, does anyone know of a good sarcoidosis doctor?

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Everything is Fine

April 9, 2010 at 10:16 pm (Uncategorized)

It is a sad statement about my health that when people don’t hear from me in a few days, they start to worry that I am back in the hospital or dead. I get anxious text messages from friends and deliberately calm messages on my voicemail from my mom when I go too long without calling or checking in. The same hold true with this blog. I now get e-mails when I lapse in posting. I am lucky to have such a network of love and concern.

Fortunately, I’ve fallen behind on writing here for no other reason than being busy. What a delight to have been occupied this week with the rush of everyday life–seeing Andrew’s kindergarten reading group put on a performance of the Gingerbread Man; attending his final floor hockey game of the season where I got to watch Andrew play with enthusiasm and Jay coach the team with obvious joy; having lunch with my dear friend Martha; spending hours with a contractor to discuss remodeling our house.

I’ve also been preoccupied with finding a new sarcoidosis specialist. I’m finishing a longer piece about this process. It should be posted here tomorrow.

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Break the Flow

April 5, 2010 at 11:14 pm (Uncategorized)

I worked four hours straight today. I was feeling well enough to go to my office. Once I was there—and away from the distractions of the telephone, the refrigerator, and the novel on my iPod—I lost myself in the process of writing. As anyone who has ever sweated over the right wording in a term paper or restarted an e-mail fourteen times looking for just the phrase to broach a touchy topic knows, this isn’t something to take for granted. I’ve named writing as my profession since 1997 and have been tinkering with words for my whole life—I started my first novel when I was nine—but I frequently find the act of writing difficult and sometimes even unpleasant. I usually feel satisfied when I’m done writing for the day, but I struggle to get to work. I’m not the only professional writer I know who procrastinates and even dreads taking up words for the day. It is challenging to convert ideas and images into language and then organize it all into something understandable. It is hard work. And I never take it for granted anymore.

My ongoing neurological problems haven’t made my writing life any easier. I’ve thought seriously about quitting and trying to find a new profession. But my parents actually weren’t lying when they told me that an undergraduate degree in medieval history wasn’t going to get me a lot of job offers. Seriously, I don’t want to give up on writing—even though the neurosarcoidosis seems to want me to. Simply looking at words causes me vertigo and headaches. And I learned today that pushing myself to continue writing in spite of escalating head pain and vertigo could very well trigger the blind spells that have been bothering me for the past couple of months.

But before I noticed the swirl of the vertigo or the stabbing in my head today, I was wonderfully immersed in the act of writing. I was working on an essay to post on the blog, but I was hoping to end up with a piece that was coherent enough that I could submit it to a magazine or use some of it for my book. But I lost all track of time and purpose. I was having such fun working with two metaphors that it was almost like playing to see how long and how well I could wend them through the piece. Jay called me once on my cell phone after I’d been at my office for a couple of hours. I still didn’t lose my momentum, but dove right back into my essay. And then I discovered that I was dizzy and that no matter how much I squinted at the screen, I couldn’t stop the letters in words and the words themselves from rearranging themselves. My head was throbbing. I couldn’t breathe. In a span of fifteen minutes I had three “white outs,” as I call my blind spells.

My friend Leah picked me up and took me home. I’m still feeling pretty shaky—even after being in bed and keeping away from words for several hours. But I’m so angry, I’ve returned to the computer. It feels important to have something to show for the world of pain I caused myself. My four hours of work didn’t nicely coalesce into a publishable—or at least post-able piece of writing. Just because I was caught up in the flow of words didn’t mean the flow made good writing. I had fun with those metaphors, but I need to prune them. I wrote “around” a few issues—instead of writing through them or about them. I digressed mightily. It was writing I needed to do. I spent a page venting rage; I wrote another page venting sadness. All this is fine. It is the way writing has always been for me. It is the way writing is supposed to be. I usually write ten times more than I need to, and then have to cut it back (usually following my friend Martha’s editorial guidance). I often have to get certain topics out of my system, as I did today. Like any other creative process, writing isn’t necessarily linear and neat.

But for me, right now, there is so little time or space to write outside the lines. When I have only one or two hours to work pain-free, spending four hours entirely as process instead of focusing on a finished product is like throwing time away. Or, at least that’s how it feels right now. It makes me so sad and so angry that I must live so narrowly—with almost no margin for error. If I push my inflamed brain too much, it freaks out and makes me seriously sick. I know this. I should have set the alarm on my phone to break my creative spell after an hour. I should have forced myself to stop writing before I made myself sick. I should have remembered that if I want to be able to write tomorrow and the next day, I need to set limits on what I do today. I should limit the time I spend in the act of writing, as well as the scope of my work. I don’t have the luxury to write around topics and play with metaphors. If I want to write my book, I need to stay on task—and stay neurologically sound. Another week in the hospital would set me back immeasurably.

I know the sensible path. I could wallpaper a continent with my litany of shoulds. But I want a life with lower stakes. I want to make a mistake—to write for too long, to walk for too long, to stand too long in the kitchen—and not have serious consequences like an extra-inflamed brain, snapped ligaments, or broken bones. With one seemingly insignificant slip-up, I can wreak havoc on my fragile status quo.

What’s especially maddening is how little time I have—to write, to hang out with Jay, to read to Andrew—without “overdoing.” As I’ve gotten sicker, every minute has become more fraught. Tick, tick, tick. The clock is always running, and I can’t quite keep pace. The bright side to all this is that I appreciate my time to write more than I ever did. I value the minutes I have and I spend them more deliberately than before. Oh, but I am sick of the bright side right now. I’m ready to stop looking for the positive spin and simply live.

But for now, I must go. Because time is flowing away from me. Because my head is throbbing and these words are dissolving. And the stakes are too high to forget this.

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Prince Charming

April 2, 2010 at 4:16 pm (Uncategorized)

Andrew is a good kid. A smart kid. A kind kid. An adaptable kid.

But he’s my kid, so I don’t often rhapsodize about what a genius he is because he can read well above his grade level, or how unique his learning-style is because he can build Lego sets designed for 13-year olds with just a little help from Jay. All parents think their kids are brilliant. Luckily, most recognize their own bias in the matter of judging their child’s aptitude and keep their trilling to a minimum. (Of course, there are always a few parents who show up for parent-teacher events and earnestly–and loudly–ask for special accommodations for their gifted child.) So when Andrew comes home from school with anything less than a 100 percent on his papers, I don’t assume that he must be bored with the basic level of math instruction he’s getting in kindergarten. Instead, I’m pretty sure he wasn’t paying attention because his mind was wandering and he’d rather think about building the Lego Indiana Jones Temple of Doom set than count the apples on his worksheet.

I generally try to avoid bragging about my son. I don’t want to be obnoxious in front of other parents. I also don’t want to talk so loudly that I make Andrew aware that he’s reading books for third graders or doing math for fourth graders. I firmly believe that kids who hear too much of this stuff from their parents can become burdened by over-expectation. If they don’t over-achieve at every step along the way, they can feel like they’re letting their parents down. Or, he could become on of those irritating children who inform everyone who will listen how smart they are. I’ve met the grown-up version of these kids, and they give me the heebie-jeebies. Self-esteem is one thing. Blatant self-aggrandizement is quite another.

But now that I’ve delivered my two-paragraph caveat, well, on with my bragging.

On Tuesday evening, Andrew announced that since it was spring break and he didn’t have to go to school, he wanted to come with me for my entire chemo appointment at the Cancer Treatment Center the next day. “How about you come for an hour?” I suggested. “No, I want to be with you the whole time.” He was quite emphatic. I was worried that he would get bored and restless during the four or five hours it takes getting blood drawn, seeing the doctor, and then getting infused with anti-nausea medications and Cytoxan (the chemotherapy agent). Once I’m hooked up to the IV pole, I can’t wander around the hospital in an effort to entertain him. He’s gotten really bored there in the past. In the end, I agreed that he could stay through lunch, and then he would have to leave for his afternoon science class at the local children’s museum.

It didn’t occur to me until later that Andrew’s sudden interest in observing my chemotherapy wasn’t just because the CTC doles out some of the best cookies in town. I think he was worried about me and what happens to me once I slide out of his sight behind the hospital’s doors. The last round of chemo had been particularly brutal. I was throwing up a week after getting the drug, and was still wobbly by the time my next dose rolled around. After watching Andrew’s behavior with me at the CTC, I now understand that he was coming to watch over me and to protect me.

My son’s kindness towards me during our time in the CTC nearly broke me heart. Instead of insisting on a play date with his best friend, he had demanded to be by my side in this place of sickness. He sharply watched the nurses every time they touched me—as they “accessed” my chest port and drew blood, as they checked my vital signs, and as they hung my bags of liquid medicine and dripped them into me. As we waited for my lab results to come back so that I could see the doctor, Andrew drew his chair close to me. “Now I am going to read to you,” he announced. For the next forty-five minutes he read his Level Three Star Wars: Yoda In Action book that I had bought for him a couple of months ago for us to read together. Previously, he had stumbled on words like “envoy,” “command unit,” “crushed,” and “battalion.” Not this time. He needed my help on a couple words here and there, but he was proud to be reading to me—especially something so exciting.

When it was time to see the doctor, Andrew sat quietly, but attentively, as I went over some questions. But then he jumped right in to the conversation to show the doctor that my broken foot had finally healed and that I was able to get the stitches removed from where the surgeon had excised the subcutaneous granuloma. “Look at how well she’s healing,” he told the doctor. As my visit wound down, the doctor was considerate enough to ask Andrew if he had any questions. “She was very sick—too sick—last chemo,” he said. And the doctor looked like his heart might break, too. But he rallied and told Andrew that the medicine was making me well, but that it built up in my body. “Every time your Mom gets this medicine, it gets a little harder.” “I know that,” Andrew said. “Pretty soon she’ll be done with it,” the doctor said, as he closed my folder and stood to leave. “But remember how strong and brave your mom is.” Andrew patted my arm.

The rest of his visit was lovely. He fetched me cold water from the cooler to drink. He fetched other patients cold water from the cooler. He drew me pictures of swords and shields to fight sarcoidosis. After we got our lunch from the cafeteria, we shared our desserts. I gave him half my lemon tart and he gave me half his fudge brownie.

When Leah came to take him to his class, he was reluctant to leave me. But I reassured him that I was almost done. He hugged me, kissed me, and gave me a final arm pat.

I kept my tears at bay for the rest of my time in the CTC. I wasn’t sad. I was proud. My pride wasn’t because Andrew was so well-behaved, or that he was reading so terrifically. Instead, I was proud (and relieved) that the great force my illness—which has hovered over Andrew since he was a baby—hasn’t stunted him. Unfortunately, he has lost a lot because of my sarcoidosis. The mother he has is not the mother I intended to be. Too often I have been sick or incapacitated and not able to give him the time and the attention he deserves. But he has flowered amidst the rubble of my illness. I think his experience with disease has made him more compassionate and kinder.

I am so proud of my golden-haired son—who sat by his mother’s side on a sunny school holiday so that he could keep her safe, pat her arm, and watch the medicine drip.

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