Making Music

March 10, 2010 at 11:40 pm (Uncategorized)

Andrew and I have our first piano recital on Sunday.

Did you notice my use of the plural “our,” rather than the singular “his” in that sentence? You’re probably thinking that those massive IV doses of prednisone I got a few weeks ago finally kicked in and have made me nuts. Or am I experiencing a perverse delayed reaction to all those “Mommy and Me” music classes that I dragged Andrew to when he was eighteen months old? Or have I merged my ego with my son’s and lost all sense of my own personality, so that anything he does I count as my own?

No, no, and no. I am taking my own piano lessons, and I will be playing my very own songs at my very own first recital. That said, my lesson slot is immediately after Andrew’s— so that I can observe his weekly piano lesson, while he gets to hang out and color during mine. Also, I let him talk me into playing the theme music from Star Wars for the recital. So I probably shouldn’t crow about my independence too much.

Music used to be an important part of my life. I played French horn for nine years, and came to love the rituals of practicing and performing. Also, my family had a piano, and I plunked about on it, learning a few songs—but mostly just enjoying the magic of making sounds and songs from simply pressing keys. As I look back, I think that both having the freedom to make music without boundaries on the piano while also having the structure of reading music and making music as part of an orchestra brought alive a piece of my soul. It was a spark that made listening to music important to me. But as I’ve grown older, I’ve lost my ability to concentrate on both music and some other task. I can’t usually shut off the task, so it’s the stereo I silence.

I wanted to share a love of music with my son. As parents, we often risk packing our children’s backpacks with the stones of our own lost loves and thwarted ambitions—not just with their books and lunch (that whole merging of egos thing I mentioned earlier). Hopefully this wasn’t what I was doing when brought Andrew to many toddler and pre-school music classes, where we sung songs, beat drums, and danced. I don’t think it warped him. And then our friend Connie found us a fantastic piano for less than $200 at a thrift store. We’ve since had a tuner out, and he told us she made the find of the century for us.

Andrew banged around on our new piano. “Do you want to learn how to play?” I asked him—not mentioning that learning to play would be a lot less fun that crashing out random notes and would involve practicing more days than not. “Yes!” he said enthusiastically. I might be manipulative, but I did have a sense that he’d like learning music. We lucked into finding a wonderful teacher. Theresa knows how limited a six year old’s attention span is. So she keeps lessons and practice material short and simple. She assigns songs that are fun and catchy. And even better, she doesn’t use the old “FACE” and “Every Good Boy Deserves Fun” acronyms to learn notes that my teachers had. So, at least Andrew won’t have memories of squinting at notes to see if they’re the “boy” or the “deserves” in the system. Instead, he’s learned “landmark” notes and then works off those to learn a new note or two every couple of weeks.

I often regret how much of Andrew’s childhood I’ve lost to my illness. Sometimes I get downright maudlin about it and cry that so many of the experiences I wanted to teach Andrew—like skiing and swimming—I’ve totally missed. One day, as I listened to him bang out a jazzed up version of “Twinkle Twinkle Little Star” on Theresa’s piano, the proverbial light bulb illuminated above my head. I was excited to ask him right after the lesson if he wanted me to take my own piano lessons and learn the same music so that we could practice and play together. “Great idea, Mommy!” he shouted as we made our way to the car. And then he did his little happiness jig. Theresa was able to teach me right after Andrew’s slot. I began the next week.

What started as my effort to play a part in Andrew’s discovery of music and as a way for us to share learning has grown into an experience that excites and gratifies me. It’s been so long since I’ve read and played music that it’s practically like starting over. And I love it. It is fun to learn something new; it is fun to do something that is outside the worn paths of my usual activities; it is fun to feel my brain working to make sense of new instructions; it is fun to work each day on a piece and hear myself getting better with each repetition. Spending fifteen or twenty minutes on the piano each day seems to stir my creative juices or free some space in my mind—or somehow make writing, cooking, and being with Andrew more enjoyable. I don’t think it’s a coincidence that the writing spree I’ve been on corresponds to when I started practicing the piano more seriously.

I’m a little nervous about Sunday’s recital. But, as I tell Andrew, everyone makes mistakes. So if I botch the grand beginning of the “Star Wars” theme, I don’t expect the earth to spin off its orbit and hurtle into space. I feel a little silly playing such a childish song. But Andrew gasps with delight every time I run through the piece. “It sounds exactly like it should, Mommy,” he tells me. “I’m glad you like,” I say back. And I mean it.

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Be Here. Right Now. Sort Of

March 9, 2010 at 11:48 pm (Uncategorized)

Please, please, please…God. Please, if you make it so that I don’t have lymphoma, so that I can live and be with Andrew as he grows up, please…I will really pay attention to my life. I will appreciate all the gifts you have given me. I will use my abilities as a writer to create something meaningful. I will prove that I am worth this second chance. I will count my blessings, work hard, and not forget how precious my life is right now. I will stop waiting for the next big trip, the next adventure, the next anything to love my life. Please, please, please.

This is what I thought when I drove from Billings to Helena in April, 2004. I had an appointment with a pulmonologist to determine whether I had lymphoma. I was making the trip with only my three-month old baby boy, Andrew, as a companion. My husband had just started a new job that week and couldn’t come with me. Andrew slept for most of the four-hour trip, so I spent the time watching the rugged landscape flash by the car windows and pleading with an unnamed higher presence to spare my life. I was being melodramatic. But I was certain that something was wrong with me and that my life was indeed threatened. I was thirty-three years old.

I don’t think I’m the only one who has experienced intense clarity because of a crisis. That day, every color looked ultra-saturated; the light was brighter and cleaner; I could smell the warmth of Andrew’s skin melding with the sugary aroma of baby shampoo; my own heart pulsed loudly in my ears, and I thought of the magnificence of my body breathing and living. I felt like I was truly seeing my surroundings for the first time. The prospect of losing this world made me take notice of its every detail. If only I could pass through this ordeal unscathed, I pledged, I would not take for granted the wonder of the sun shining through Andrew’s blond curls.

It turned out that I didn’t have lymphoma. As you all know, I was diagnosed instead with sarcoidosis. After the biopsy that determined this, I awoke from the anesthesia feeling so blessed to have been given life at all that I was joyful even before I learned the results of the procedure. This sense of fortune stayed with me. I kept my whispered frantic resolution to appreciate the abundance of goodness in my life—a healthy and happy baby; a smart and kind husband; families that are loving and helpful; friends that excite my mind and make my world better; a house that reflects our personality and is spacious enough for us to be untidy; work that I love; living in a beautiful place; having enough money to meet our needs; books to read; music to enjoy; hiking trails literally out our back door; once more living in a climate of four distinct seasons; and on and on. Once I started to take note of all I had, I almost couldn’t stop accumulating items to add to my mental gratitude list. I found myself appreciating pens and paper (as I thought of the children Jay and I had met in Cambodia who had begged us for a pencil), the luxury of having a washer and drier in my house, the decadence of chocolate, my morning ritual of strong tea and milk.

And then, I stopped. It didn’t happen all at once. I didn’t decide to toss off my sense of gratitude in one afternoon. But I gradually paid less and less attention to the hundreds of miracles that occur every day and the beauty that exists in the most unexpected details. I began again to take for granted my heart’s steady beat and the improbability of life. I counted on the next day and the one after that. I pushed the thought of dying into the recesses of my mind. Someday, sure, I would die, but that was a long time away. No need to worry about that now.

As my sarcoidosis has proved to be difficult and potentially life-threatening in its own right, I have had many more opportunities to re-whisper my case for life to the universe’s ruler. When the doctors found sarcoidosis in my heart and told me frightening worst-case scenarios, I lurched from the exam room and hurried to the bathroom, feeling as if I might be sick. I closed my eyes and begged for more time in my body on this earth, as my stomach settled itself amid the cool porcelain quiet. And recently, when I was hospitalized with neurosarcoidosis and listened to my doctor warn me about the potential for massive strokes and terrible seizures, I tuned out his words and thought instead of everything I want to accomplish in my life and how I hoped to have time to do it. But even with the too-frequent mortality checks, I can’t seem to maintain an ongoing feeling of gratitude.

Being chronically ill has certainly made me more mindful of all that I have. Sarcoidosis has taught me to appreciate my life, my opportunities, and my amazing luck at having Jay and Andrew with me in this world. I wouldn’t have signed up for getting sick if I had a choice, but having the disease has made me a better person. Before I got sick, I was inordinately consumed with abstract goals, with how my life looked to others, and with what I needed to make my life better. I wasn’t bad, but I was self-absorbed. By being so intent on me, I missed a great deal of what went on around me. As I hopped from accomplishment to achievement to planned experience, I sometimes didn’t actually enjoy or fully take in what I was doing. Too often, I completed some project or trip with the sense of being able to now check it off some list I had written onto my soul.

But even now, I have to remind myself constantly to be grateful for health insurance and morning tea, for Jay and Andrew’s love, for the steady friendship I have with my mother. I also struggle to stay “in the moment.” I do mindfulness exercises like meditation some days, and this helps me unwind into the very moment I am fortunate to inhabit. But it does not come easily to me. I quite often catch myself living in tomorrow or next week (or last week, for that matter). Thoughts like “I’ll be able to write my book when…;” “I’ll spend more time with Andrew when…;” “I’ll have a long lunch with Molly when…;” “I’ll snuggle next to Jay and tell him about the book I just finished when…” flit through my mind like gnats on a summer day. I catch myself and rethink what I’ve just delayed. Better to play with Andrew today, work on my book for a few minutes today, schedule a meeting with Molly today, and find Jay right now. Now is all I have. You would think that after so many doctors have told me how precarious my existence is that I would remember this truth. But I don’t.

Maybe I’m letting myself off the hook when I think that it is actually a good sign that I have to work hard not to put off my life until later. It proves that my spirit is resilient and that I am not cowering in fear of losing tomorrow. My body has taken a beating from this pernicious disease and from the equally pernicious drugs I take to treat it. But my heart keeps on ticking, my brain keeps sending commands, and I keep on living. After nearly two years of getting chemotherapy every other week, I still get myself out of bed when the worst of it is over and get back to loving Jay, mothering Andrew, seeing my friends, talking to my mom, and writing when I can.

It is a fine line, a balancing act, this effort to be aware of my life’s finitude while still living fully. There is a Hasidic teaching that every person should carry two pieces of paper—one for each pocket. On one write, “I am nothing but dust and ashes,” and on the other, “The world was created for me.” The reasoning is that by grappling with these two opposing truths, we can find the proper balance. My effort to see with the clarity brought by a life-threatening event, while still living as if and believing I am not in danger is somewhat akin to carrying the two strips of paper. But in my version, I would write, “Exist only now” on one and “Plan for tomorrow” on the other.

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Justify Yourself

March 9, 2010 at 1:09 am (Uncategorized)

It is my policy to keep this site as neutral as possible about the Marshall Protocol (MP). I do not understand how the question of whether or not sarcoidosis is an auto-immune disease and whether it should be treated with immune-suppressants or antibiotics became such a divisive issue in the sarcoidosis community. Whatever its origins, though, there truly is a rift between those who follow the MP and those who don’t. It saddens me that this debate hasn’t remained an intellectual one and has instead torn apart a community that needs to be united in its demands for more funding for research and education. Chronic Town is neutral territory. I have been honest and open about which side of the MP debate I’ve landed on. It’s pretty obvious that I have opted to follow the recommendations of physicians who think of sarcoidosis as an auto-immune disease and that my treatment is centered on immune suppression. But I’m not strident about this. I’ve heard from many MP adherents who have had excellent results.

In this latest entry, I write about my insurance company wanting to force me to see a doctor who recommends the Marshall Protocol. My outrage isn’t directed at the MP. I hope it is clear that I am angry that faceless, uninformed bureaucrats want to choose for me how to think of and treat my sarcoidosis.

Only a week or so after my most recent hospitalization, my health insurance plan decided to flex its muscles. Instead of just shelling out thousands of dollars for a treatment plan I’ve worked out with my doctors, my insurer wants in on the action. No more waiting in the wings. The bean counters want to play an active role in determining what treatment I should get for my chronic, systemic sarcoidosis.

The bean counters picked a doozy of a day to get involved. Maybe they planned to catch me at my weakest. I had made it out of bed and into my doctor’s office to talk with him about starting a new drug called Rituxin—which is showing early promise in treating neurological forms of sarcoidosis. But I was still shaky from the flare-up of neurosarcoidosis that had landed me in the hospital. The combination of vertigo, episodes of visions loss, and crushing head pain made it difficult for me to walk across a room. My left foot is still encased in a cumbersome orthopedic boot to treat the fractures caused by osteo-sarcoidosis. I used a single climbing pole to steady myself on what seemed like a very long march from the waiting room to the examination room.

By the time my doctor arrived, I was sweating profusely from pain, from the effort of lurching around with my pathetic pole, and especially from the nauseating sensation that the world is rocking that my vertigo causes. But I was proud of myself for making it there—and especially for having compiled a list of cogent questions about new medications and the pending results of neurological tests that would show whether I was having seizures or active inflammation on my optic nerve. I was especially curious about what my Helena doctor had learned from talking with my sarcoidosis specialist in Ohio.

As always, my Helena doctor patiently worked through my list. I always have a list of questions and concerns for our meetings—even when I’m in the hospital and he stops by early on his morning rounds. I mention this because I take pride in being an informed and educated member of the team of physicians, therapists, and other health care professionals who I’ve trusted to make me well. I research medications—old and new—that are used to treat sarcoidosis. I plod through scientific journal articles about new findings in treating sarcoidosis. Sometimes I need to send particularly abstruse pages from periodicals with scintillating titles like the Journal of Chronic Obstructive Pulmonary Disease or Current Opinions in Pulmonary Medicine to my sister, who has a Ph.D. in a scientific field, to make sense of the medical language, because for it, it’s like trying to make sense of a paper written partly in Swahili. But I keep at it. I make a note of the physicians who are spearheading new drug trials or who are rethinking established notions of the disease’s process and treatment. Jay and I even traveled to an annual meeting of WASOG (or the World Association of Sarcoidosis and Other Granulomatous Diseases for those of you who want to tie your tongue into knots) in Denver a few years ago. We listened to researchers present papers on sarcoidosis-related topics ranging from if right-heart catheterizations can predict whether milder forms of cardiac sarcoidosis are likely to progress to life-threatening ventricular abnormalities to whether or not treating early and less severe cases of sarcoidosis with prednisone actually contributes to causing the disease to become chronic, systemic, and severe. We have kept tabs on the doctors we met at that conference. In the ultra-specialized world of medicine, these researchers form a sort of elite cadre. We came to understand that a few specialists at far-flung institutions drive most of the research into sarcoidosis—Marc Judson at the Medical University of South Carolina; Robert Baughman at the University of Cincinnati; Alvin Tierstein at Mt. Sinai Hospital in New York; Om Sharma at University of Southern California; Daniel Culver at the Cleveland Clinic; and Milton Rossman at the University of Pennsylvania, to name a few—and that each of these doctors has carved out a sub-specialized niche. One doctor might be particularly interested in treating ocular sarcoidosis, while another explores neurosarcoidosis.

It sometimes feels that keeping myself apprised of what’s happening in the land of treating and researching sarcoidosis is like having a second job—and one I don’t particularly relish. But what choice do I have? As many of you reading this know, too many internists and family care physicians know little about sarcoidosis—and what they do know is too often outdated or even untrue. I know I’m not the only person with sarcoidosis who has been told that the disease “isn’t a big deal” and that “no one dies from sarcoidosis.” The physicians who blithely pass along this misinformation are probably thinking of the National Institutes of Health studies that show that seventy percent of sarcoidosis cases are confined only to the lungs and actually remit spontaneously. How wonderful that the majority of people diagnosed with sarcoidosis don’t need any treatment to be cured and don’t have to watch as the disease moves from vital organ to vital organ like a lion stalking its prey. But these physicians seem to forget that for the other thirty percent of sarcoidosis cases, the disease is chronic, involves multiple organs, and requires treatment.

Conversely, I’ve seen my share of internists (and even some specialists) who don’t minimize the potential impact of sarcoidosis but instead make some aspect of the disease much more dire than it is. These purveyors of doom and gloom have seriously spooked me in the past with their forecasts of my untimely and unpleasant death. I don’t excuse the ignorance that causes these physicians to discount my health problems or to needlessly terrify me. (If a medieval-history major like me can find accurate information about sarcoidosis, there’s certainly no excuse for a doctor to be ignorant.) But I do recognize that sarcoidosis isn’t a disease that internists encounter every day. There just isn’t a sizable patient population to drive demands for more research into its causes and cures, like there is with other diseases like diabetes, breast cancer, or depression.

I don’t want to invest a lot of time into learning about my disease and the latest treatment options. But what choice do I have? I want to get well, not to spend months spinning in vertigo or cringing in pain. And if I can’t be cured, I want to minimize the impact the disease has on my life. It would be nice if I could casually turn to the doctor down the street for cutting-edge treatments, but that is simply not a real possibility. If I want to beat this disease, I need to work with the best doctors to get the best treatment. This means that I spend time pulling my hair out to make sense of odd-sounding medical terminology in scientific papers; this means I travel to another state to see a specialist; this means I have to pester that specialist to communicate with the doctors here in town who actually administer my treatments. And now, it means I will have to fight with my insurance company to see the specialist of my choice and to get the treatment my doctors and I think will be most effective.

When my doctor and I had gone through my list, he shifted uncomfortably in his chair. He is a good man and a wonderful doctor. He has always scrupulously asserted that sarcoidosis is not his area of expertise, but that he is willing to administer the drugs the specialist recommends. But even so, it is this local doctor—not the highfaluting specialist—who has had to deal with my various crises. It is he who had to pick up the pieces last year when my gastrointestinal system bogged down under all the harsh drugs I was taking. It is he who has to figure out how to make me functional when I arrive in his office suddenly unable to see, shaking from neurological pain, and babbling incoherently. It is he who oversees my chemo infusions every other week and then patches me up a few days later when I can’t stop puking and can’t keep myself properly hydrated. It is he who accepts the risk that I might have an extreme allergic reaction to the new drug, Rituxin, as it dripped into me in his office. Not surprisingly, it is he who got drawn into my health insurance company’s plans to better “manage” my care.

“Rebecca,” he said, after a few shifts in his swivel chair, “We’ve got issues with your insurance company.” He went on to explain that the bean counters wanted me to see a psychiatrist. I was already feeling pretty beaten down by the long stay in the hospital and all the bizarre and frightening new neurological problems that had brought me there. But this bureaucratic pronouncement that I seek psychiatric care made everything worse. I felt weirdly violated, as if someone had slipped into the room without me knowing and had now taken charge of my time with my doctor. This masked third party wouldn’t speak directly to me, but had instead made my doctor—one of the people I trust the most to look out for my interests—issue commands. “Do they think I am some kind of hypochondriac? Is that why I have to see a psychiatrist?” I asked my doctor. With his usual aplomb he said, “I have utterly no idea what they think. But I’d bet it has something to do with your pain medicine.”

Ah, the pain medicine. Now it made sense. I have worked hard with both my specialist and my local doctor to construct a pain management regimen that cuts down on my head pain without turning me into a zombie. Part of this plan involves oxycontin, a long-lasting narcotic pain medication. I don’t like taking the stuff—and I especially don’t like the fact that I am now physically addicted to it—but it is the only thing that manages my pain somewhat effectively. My doctor and I have talked extensively about the implications of regularly oxycontin use. He knows that I hate feeling fuzzy-headed and doped up. He knows that twice I have nearly tapered off the stuff before having the sarcoidosis flare up again, which meant that I had to start back up on the oxy again so that I can be moderately functional. That’s the twist—I’m the anti-anti-drug ad: my life is better on this medicine. Even when I’m in the midst of a disease flare, I am able to write more, spend more time with my son, be more coherent with my husband, and keep up with friends better when I take the oxy. I now keep scrupulous logs of how much and how often I take it and what my pain level is before and after each dose. I also have no doubt that I will stop taking them when I am not in pain. Like the other drugs I have to take—Cytoxan; Thalidomide; daily antibiotics to prevent the pneumocystis pneumonia I’m more likely to catch because of all the immune-suppressants I take; prednisone, to name a few—the narcotic pain pills are a necessary evil. I look forward to the day when they are no longer necessary, when I don’t have chronic inflammation in my brain stem and cranial nerves. But right now I do.

Pain medicine is quite expensive. So, too, are the daily Thalidomide pills. And that is ultimately why my doctor had to tell me that my insurance company wanted me to go to a shrink. The State of Montana, which employs Jay and insures us, recently changed the prescription-drug part of our insurance plan. The old pharmacy plan was annoying. We had to fight for me to get drugs like Thalidomide—which the specialist believes work well to treat neurosarcoidosis, but which are not yet FDA-approved for sarcoidosis—but had usually gotten our way. But our new prescription drug plan is even more zealously trying to limit expenditures for patients like me, complicated cases that don’t fit into their neat formulas. (Turns out that dozens of cancer patients—folks like me who take narcotic pain medication—are in the same boat. In a perverse way, it’s reassuring to know that I’m not the only one up against the bean counters.) In its efforts to cut back on my costly (and in their worldview, unnecessary) pharmacy bills, the bean counters in the prescription-drug part of my health insurance plan got the attention of the bean counters in the medical part of my plan. Without telling me anything about it, the insurance company conducted a review of my treatment. After talking with my trusted doctor, I now think that the bean counters’ recommendation that I see a psychiatrist is to ascertain whether I am a pain medicine junkie. I don’t have anything against psychiatrists per say (in fact, I’ve consulted with a few in the past), but I am insulted at the insinuation that psychiatric issues are a component in my illness or in the medication I take to manage the illness.

The bean counters have a hired gun of a doctor at their disposal. The recommendations of his “review” are insulting, nonsensical, and potentially life-threatening. In addition to the request that I visit the psychiatrist of his choice, the hired gun also directed me to get a “second opinion” at Johns Hopkins University. “Why,” I can hear you thinking, “would she be opposed to getting a second opinion from one of the best medical schools in the country?” First, I am still very sick from the latest neurosarcoidosis flare-up. I continue to have at least two episodes of vision loss each day; I continue to struggle with intense vertigo and pain. It exhausts me to travel a few blocks by car and run errands. I can’t imagine flying across the country to see a new doctor—much less collecting my medical records, arranging for someone to care for Andrew, and figuring out all the logistics of such a trip. Also, I don’t need a second opinion. I’ve already gotten a second opinion—and a third and a fourth and a fifth. Before Ohio, I’d been to sarcoidosis experts at National Jewish Hospital in Denver, Mt. Sinai Hospital in New York, and the University of Pennsylvania in Philadelphia. Just last year, I spent an exhausting and costly 10 days at the Mayo Clinic, where I saw a gastroenterologist, a neurologist, an endocrinologist, a cardiologist, and an oncologist (because many of the drugs used for sarcoidosis are also cancer treatments). The Mayo doctors all agreed with the treatment plan I had developed with my current sarcoidosis specialist in Ohio.

It was pretty clear to me that the hired gun hadn’t bothered to read my chart, or he would have known that I have not suffered from a lack of medical attention. I have deliberately sought out the best and the brightest to fight the multi-tentacled monster that is sarcoidosis. Not one of these specialists has ever cast doubt on my diagnosis of sarcoidosis or the treatment course I have followed. I suppose that the one benefit of having such a rare form of a rare disease is that the field of knowledge about sarcoidosis is relatively finite. By this, I mean that it’s actually possible for a patient like me to have a good grasp on what’s going on in the medical world of sarcoidosis. Because of the work I’ve put into reading journal articles, attending WASOG, following clinical trials, and keeping apprised of the chatter on different sarcoidosis bulletin boards and Web sites, I’m confident that I’m getting cutting-edge treatment. I am also certain that despite the letters “m” and “d” that come after his name, the hired gun knows less about sarcoidosis than I do. It didn’t take me long to figure out why a parsimonious health insurance company would suddenly want me to jet across the country to a hospital not considered “in network.” It is because Johns Hopkins is home to one of the very few physicians that publicly espouse the Marshall Protocol.

(As I said in my preamble to this entry, the question of whether or not sarcoidosis is an auto-immune disease (as my sarcoidosis specialist believes) or whether it is caused by an infectious agent (as Trevor Marshall proposed), is so divisive that most sarcoidosis-related Web sites ban the topic. I don’t think I need to prohibit any mention of the Marshall Protocol. Just knowing that I’m getting chemo to treat the neurosarcoidosis would inform you that I have opted to follow the auto-immune view. But I hope it’s also pretty clear that I am not a zealot about this. The MP has worked very well for many people; I have considered switching to it on several occasions. For now, though, I am staying the course with immune suppression.)

I was outraged by the hired gun’s demands that I make a pilgrimage to Hopkins. The only reason I could see that he wanted me to get this “second opinion” was to cut costs. Following the Marshall Protocol means taking a long course of antibiotics and Benicar (a blood pressure medicine). Since both of these medications are inexpensive, converting me to the Marshall Protocol would save the insurance company a lot of money on all the pricey, brand-name drugs I now take. Remicade costs $8,000 per monthly infusion; Cytoxan (and all the IV anti-nausea medicines I get with it) run about $13,000 every-other week; I shudder to think how much Rituxin will cost (I haven’t gotten my first bill for the eight-hour long infusion). Thalidomide costs over $1,000 a month, as do the narcotic pain medicines. What a difference it would make if I opted for the Marshall Protocol, wouldn’t it?

The only problem with my conversion is that I don’t believe in it. I’ve spent a lot of time reading about T cells and B cells and the immune system’s inflammatory response gone awry. I’ve seen data from clinical trials that test the efficacy of immune-suppressants on sarcoidosis. The Marshall Protocol hasn’t been systematically tested in the same way. In my opinion, it remains a theory. But why does this matter? Why do I feel like I have to justify following the recommendations of doctors all around the country? Why must I recount my opinion about T cells? How is it that my insurance company has made my following standard medical opinion seem dicey? It is not that I am requesting my insurance company pay for me to get herbal extracts in Guatemala. I’m not tracking down obscure doctors outside the community of accepted medical opinion. I’m trying to follow the advice of the Mayo Clinic, for god’s sake—the paragon of American medical expertise. I find it laughable that the hired gun has turned the standard script of health insurance company vs. sick person on its head. He has it backwards. I’m the party that is supposed to agitate for an alternate treatment; they’re supposed to force me to stay in the mainstream. But when it comes to money, scripts can be rewritten and principles thrown aside.

I am tremendously lucky that Jay is by my side—in this and in all else in my life. It helps that he is an attorney, that he knows what sort of language to use to fight for my right to seek a cure where my doctors and I see fit. I can’t imagine having to deal with a neurosarcoidosis flare, ongoing chemo, and this cesspool of misinformation and cost-cutting gone awry. Jay has been my knight in this battle. I don’t know how this will end. But I do know it will continue to cause Jay and me stress, and that it will likely continue to eat up our time as we fight for what is fair.

I know that I’m fortunate that this is the first truly serious insurance battle I’ve entered after all this time in Chronic Town. Whether or not you follow the Marshall Protocol, the path of immune-suppression, or the chocolate ice cream plan, I have no doubt that many of you have much worse tales of insurance company woes. If you ever want to vent about these experiences and want to share with the rest of us in Chronic Town how you’ve been able to see the doctors you want and take the medicines you need, write us and help us learn.

There’s a piece of me that thinks I should try to ferret out some larger meaning from these events. I could de-personalize my melodrama and try to argue something about health care reform or the state of medical research. But I don’t want to. I am so upset precisely because this matter is so personal. Medical decisions should be made by a patient and her doctor. As in matters of love, I think that when medicine involves more than two people things quickly become rather icky. I shudder at the thought of the hired gun’s cold and prurient eyes on me when I talk with my doctor. I don’t want his clammy hands on the exam gown or in my chart. Being a patient requires surrendering too much personal dignity and privacy as it is.

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The Trough

March 6, 2010 at 5:09 pm (Uncategorized)

It’s a lovely Saturday afternoon. Steady sunshine has melted the piles of dirty snow and the thick carapace of ice on our driveway. For the first time in many months, the sun warms, instead of just functionally illuminating the short days. Spring feels possible. The sky has lost its pallor and rolls off endlessly above the foothills and the trees to the horizon. I can almost hear seeds rustling and coming to life in the soil, worms awakening and pushing through their tunnels in the cold earth. The bare tree branches clatter with the possibility of growth.

We all sensed this shift in light and heat. Andrew sprung into our room early in the morning. He was electrified with energy to be outside. He wanted to go to the park, to ride his bike, to splash in the deep puddles the retreating snow had left behind. At first, Jay wanted more sleep and tried to convince Andrew to watch his favorite Scooby Doo installment about ghost pirates for the thirtieth or fortieth time. But Andrew would have none of this. Even ghost pirates couldn’t make him forget about the puddles and the sunshine just outside. Jay relented. As they prepared for an outing, I even heard him talk about going for a hike.

I am not caught up in Spring Fever. When Andrew dashed into our bedroom early this morning to announce the bright beauty outside, I burrowed deeper into our flannel sheets and ignored him. As I hoped, Jay answered Andrew’s summons and left me alone in bed.

I’m not just a grump. I’m still struggling with the after-effects of the chemotherapy I got on Tuesday. Since Cytoxan has a cumulative impact, every dose hits me a little harder. I am more exhausted, more nauseous, spend more time throwing up, and recover more slowly every time I get an infusion of Cytoxan. I’ve tried to explain to my six-year old son the perverse logic of treating neurosarcoidosis with chemotherapy. The fact that I feel lousier means the medicine is working, that it is building up in my brain and bloodstream. When I have attempted to convince him that my feeling worse is actually a good sign, Andrew usually gives me a hard look that warns me not to push my luck with flim-flam excuses for staying in bed.

Today I’m having just as much trouble as Andrew grasping this paradox of making myself feel bad now so that I’ll feel better later. It strikes me as a load of Pollyannaish drivel. Today I’m having a hard time with everything. I melodramatically want not to be. I don’t feel suicidal, just overburdened with the pathetic trappings of my existence. I don’t want to fuss with prying the anti-nausea medicines from their complicated foil packets, don’t want to feel the jolt of pain as my feet hit the floor, don’t want dutifully to gulp down a bland breakfast only to vomit it back up in less than an hour. I especially don’t want to disappoint my small boy who wants to celebrate the arrival of Spring, while I want to bury myself under a protective sheath of ice and snow.

This happens every other week. I have grown accustomed to the physical and emotional toll of getting the Cytoxan, but I am still caught off guard by the exhaustion, the depression, the vomiting, the joint pain, and the mouth sores. You’d think that after nearly two years of this rigmarole, I would no longer be surprised when I don’t bounce back from chemo as quickly as I’d like. Nevertheless, I am surprised anew every other week. Surprised that I sleep so much after getting Cytoxan, surprised at how nauseous the drug makes me, surprised at how long these symptoms stay with me.

I am somehow able to hold two truths. I am continually shocked at how bad the Cytoxan makes me feel. Yet I also believe the Cytoxan has significantly reduced both the number and severity of the worst symptoms caused by my neurosarcoidosis. In order to to believe that the Cytoxan is making me better, I’ve had to relinquish old ideas of what healing looks and feels like. I won’t have my own Lazarus moment, when I cast off my disease and am returned to my former life and health. Curing my sarcoidosis is much more humdrum. I chip away at this disease every other week with each dose of chemo. I have few epiphanies and no startling revelations of health. Instead, my treatment is more like reporting to a job I don’t especially relish.

The Cytoxan is certainly chipping away at me along with the disease. As the side effects from the drug become more pronounced and last longer, I have to fight not to wallow in self-pity and not to give up the struggle to be healthier. But I have a harder time “bouncing back” (there is not actual bouncing involved) from each treatment. This makes some sense. Because the drug makes me so tired and nauseous, I spent most of the days after each Cytoxan infusion in bed– sleeping, trying not to throw up, or listening to a book on my ipod. So when I want to cast off my bed sheets and reclaim my life, I have to work all the more to regain basic functions that I lost in all those hours of sleeping. I have to reintroduce normal food to my stomach. I have to build back my body’s strength so that I can sit upright to work, walk around the house, make dinner, catch up on e-mails, visit friends, talk with Jay, and play with Andrew. This might not sound like much, but spending four days out of fourteen in bed takes its toll on the body’s endurance and strength. Each dose leaves me in a trough. I have to scramble and claw and fight simply to get back to the point at which I started. And then it’s time to launch the cycle all over again and get another Cytoxan infusion.

Before I got sent off to Chronic Town, I was a big believer in “powering through” physical and emotional challenges. This coping strategy was probably left over from my bicycle racing days. As a race was winding up, I needed to put my head down and power up the last big climb before the finish line—no matter how lousy and wobbly I felt. Long after I gave up competitive cycling, I held onto this notion that I could “power through” difficulties. When Jay and I were getting ready to move to Palau for a year, we put off sorting through our stuff and packing the things we wanted to bring along to the tropical islands from the things we wanted to lock in a storage unit until we returned. No problem. We powered through. Neither of us slept for a couple of nights, but we got our furniture into storage and our clothes shipped to Palau. Similarly, when I was writing a reference book on Internet resources for history teachers, I let myself fall behind—way, way behind—the schedule I’d created for myself. No worries. I powered through. It certainly wasn’t pleasant to sleep so little for so many days, but I met my deadline and finished the book. My attitude towards exercise has been especially colored by my old biking mantra of powering through. Although I’ve never been as overweight and out of shape as I am now, I had a few bouts in the past of letting myself gain a few pounds and not go to the gym. I suppose I didn’t worry because I would soon decide to get back into shape and then dive into a vigorous exercise and diet plan. Sure, it was unpleasant for a few days, but I powered through.

It makes me a little wistful to write about these times. I have tried to power through a problem and get myself back into shape, back to working full time, back to at least having an uncluttered kitchen table. But in my post-sarcoidosis and post-Cytoxan life, I simply cannot. If I attempted to ride my stationary bike for an hour (or even twenty minutes), or if I opted to hike with Jay and Andrew to the summit of Mount Helena, I would power myself right to the emergency room. I know because I’ve tried. I have lost to my disease and to Cytoxan basic conditioning and stamina. I emerge from each Cytoxan treatment to find that I’ve lost a few feet of solid ground, that I’m standing in a trough of fatigue, de-conditioning, and nausea.

One benefit of getting Cytoxan for so many months is that I should know what to expect—as long as I don’t listen to my inner barrage of self-loathing and over-expectation. But I still give these chirpies too much time and volume in my head. Listening to the soundtrack of “you’re fat, lazy, and malingering; all you need to do is get up and get busy” isn’t making it any easier to return to normal life after getting chemo. In fact, the chatter about how I should be feeling better four days after chemo does nothing but demoralize me.

I am learning—slowly but surely—that the hateful script in my head is slowing my progress. By demanding myself to feel better and be more productive after every dose of Cytoxan, I am digging the post-chemo ditch a little deeper. I am ridiculously hard on myself. I’ve made the past two years of getting chemo even more difficult by lecturing to myself that each bout of crushing fatigue and non-stop puking isn’t really hard at all. Powering through a final climb in a bike race is one thing. Returning to life after chemo is quite another.

I am trying to allow myself to live my experiences with chemo as they truly occur—not how I think I should feel, could feel, or might feel. It is immensely difficult to accept the reality that I feel really lousy on the Saturday after I get chemo on a Tuesday. In the past, I haven’t let the truth stand in the way of a plan. No matter how much evidence there was to the contrary, I blithely made plans for these Saturdays—only to then be forced to cancel and feel a little worse about myself.

I don’t like Chronic Town. I write about living with a chronic illness because I want to make something true and maybe even beautiful emerge from the barrage of tests, drugs, and fears that characterize my existence. But how can I accurately portray Chronic Town if I keep pretending half my problems are caused by laziness, not by the insidious disease occupying my vital organs and requiring an ass-walloping treatment plan? I’d desperately like to be able to power through this Saturday’s difficulties. My mouth hurts because the chemo has opened up little sores on my tongue and above my teeth. I want nothing more than to sleep. And I wish I could stop feeling nauseous and stop vomiting. I wish I didn’t have to claw my way back to level ground after being plunged down into this chemo’s trough.

But this is what I have. Hating and berating myself for being sick and for getting chemo won’t make it otherwise. Pretending that all I need is a little more willpower won’t make me well or make my life better. In fact, giving in to the fantasy of self-loathing—that with more gumption and less whining I’d be fine—will rob me of what is real and what is truly mine. Yes, I have to dig myself out after chemo; yes, I am tired. But I am thinking and writing. I am growing and learning.

I can’t be outside in the sun today, but I can feel its warmth within me nevertheless.

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Cut the Sunshine

March 5, 2010 at 5:33 pm (Uncategorized)

Today I am doing battle with my inner chirpies. These interior voices are really much meaner than their innocent and fluffy-sounding name suggests.

As usual, the chirpies began the day with non-stop chatter.

Look, the sun is shining. Enough lazing in bed after chemo. It’s time to be up and at ‘em. You’ll feel better after a shower. Make your bed; that way you won’t want to crawl back into it. You got chemo three whole days ago. You’ve had plenty of time to rest and recover. Now it’s time to start living and working. Get up. Get up. Get up.

I named the chirpies for their bright, bird-like utterances. I have never caught sight of one, but I picture them as winged and feathered. They have sharp talons and beaks that have pecked me. Their cheerful voices can grow loud and shrill enough to break glass– or my will. I envision them as akin to Homer’s Harpies—sinister amalgamations of woman and bird. Dante certainly knew better than to discount the Harpies as fluffy novelties. In the Inferno, he populates the realm of Hell where suicides are sent for all eternity with Harpies.

With dire announcements of the coming woe.
They have broad wings, a human neck and face,

Clawed feet and swollen, feathered bellies; they caw
Their lamentations in the eerie trees

Unlike these gloomy bird brains of mythology, my chirpies have served me well in the past. Over a decade ago, I suffered from severe depression. Left to my own devices, I would have spent years in bed because I was too paralyzed, too frightened, and too demoralized to scramble out from under the covers and go to class, or work, or a party, or wherever I would find human contact and the pride of accomplishing a task. Back then, listening to the chirpies order me out of the house actually helped me. Their bright chatter taught me that doing is often more important than being. Rather than languish in a therapist’s chair dissecting the nervous fibers of my unhappiness, it was easier and more effective to heed the chirpies’ commands and dash out of bed, quash the voices in my head telling me I was too tired, too sad, and too unprepared. Once I started listening to the chirpies instead of my dour psychologist, I graduated from U.C. Berkeley, married Jay, launched a successful (and sometimes even lucrative) career as a writer, moved first to Montana and then to Palau and eventually back to Montana again, and gave birth to a healthy baby boy. Using the language of Gretchen Rubin’s The Happiness Project, I had opted to “act the way I wanted to feel,” rather than try to fix how I felt. It worked.

And then I got sick. When I first got diagnosed with sarcoidosis, I felt like I had dodged the proverbial bullet. Initially, my doctors had thought I might have lymphoma, so when I returned to consciousness after the biopsy and learned that I didn’t have cancer but instead this weird-sounding auto-immune disease, I was happy. I became even happier when I conducted some cursory on-line research and learned that nearly seventy percent of sarcoidosis cases spontaneously remit. In other words, for more than two-thirds of the people who get sarcoidosis, the disease just goes away—without treatment, worry, or fuss. Naturally, the chirpies thought this was my future.

But when I tried to jump back into my normal life, I didn’t feel quite right. I awoke in the middle of the night, unable to find oxygen even while my heart hammered at twice its normal rate in my chest. I lost feeling in my left foot and left hand. The chirpies told me to stop being a hypochondriac and to get on with raising my kid, living my life, and loving my husband. However, my Montana doctors obviously didn’t have a direct line to the chirpies’ suggestions, because instead of ordering me to buck up and stop complaining, the doctors sent me to see sarcoidosis specialists in Denver, where I was diagnosed with cardiac sarcoidosis. Since then, I have watched the disease move from organ to organ like a real estate mogul devouring beach-front property. There goes the liver, and the spleen, now it’s taking the brain and the bones. I learned on Tuesday that I have a new sarcoidosis lesion on my pelvic bone.

Throughout it all—the trips to medical centers in Denver, New York, Philadelphia and Cincinnati; the inevitable progression of simpler treatments yielding to more toxic and desperate combinations; my son’s sadness at seeing his mother sick; Jay’s worry about me and anger that he can’t fix me—the chirpies haven’t changed their cheerful-sounding and forceful message, which they deliver in bright and bold voices. Get up; get with it; stop lollygagging; get with the program; stop feeling sorry for yourself; lots of people have it much worse than you; you’d feel better if you just got your fat ass out of bed.

For the most part, following the chirpies’ song—or some version of it—can work well, as long as you don’t have a severe health problem. I know many people, including my own husband, who deal with adversity by putting one foot in front of the other and not looking up to take in the shape and shadow of their challenge. I respect this strategy. It helped me for many years. Busyness was better than gloom. Productivity beat the hell out of ennui.

But the chirpies have no mercy. They don’t seem to recognize the difference between being physically ill as an after-effect of getting chemo and merely hanging out in bed because I don’t feel like facing the day. The chirpies are stern task-masters. They demand to know how many days chemo really demands for recovery; they wonder if my vertigo is actually as bad as I think; they nag constantly that my head pain would feel much better if I was more active. I’ve tried explaining to the chirpies that when I’m lost in the sea of pain in my head, I can’t really do anything except hide from the light and wait for the worst of it to pass. Nonsense, the chirpies retort. Nothing is so bad that a hot shower, a cup of coffee, and some exercise can’t fix it.

I’ve only recently begun to pay attention to my inner voices. Incidentally, I am not schizophrenic or suffering from multiple personality disorder (as far as I know). Rather, like the rest of humanity, I have internal voices that steer me toward certain decisions, contribute to how I feel, and give me guidance. But my chirpies have taken the helm in recent months. They have chirped, clucked, and shouted out calmer thoughts. I was shocked when I started to tease out the chirpies’ constant badgering. I discovered that I subjected myself to a barrage of self-loathing. My problem was no longer that I needed to get up and at ‘em—that working on an essay, going to the gym, or carrying out an art project with Andrew—would make me better. My sickness was bigger and badder than anything the chirpies had previously encountered. But that doesn’t stop them from issuing fluting commands to stop complaining, get busy, get out of bed, get with the program.

This afternoon, I gave in to the chirpies’ commands. I should feel better from chemo by now, I agreed, and forced myself into the shower. Of course, I actually didn’t feel better from the chemo. I nearly threw up, felt woozy standing underneath the water, and couldn’t stop shaking until I was back in bed. No matter what the chirpies say, chemo continues to make me feel lousy for at least three days.

One of the most difficult aspects of living in Chronic Town is having to discard old ways of dealing with problems. The chirpies are a fine example. Prodding myself to be and to act functional was once a viable way to steer clear of depression and to embrace the life I had. But everything is different in Chronic Town. The chirpies aren’t helping me in this new world. They are wearing me down. Instead of motivating myself, I use these voices to hurl insults at myself for not being well.

I wonder if and how the chirpies might fit into my life in Chronic Town. I don’t want to relinquish the inner sense of action and accomplishment embodied by the chirpies. But I also can’t go on listening to the litany of my wrongs when I’m legitimately stuck in bed. The refrain of fat, lazy, and malingering isn’t helping me at all. It’s just another burden to overcome.

How have you dealt with managing inner expectations? Is there a way I can teach my chirpies to be kinder and more considerate about the difficulties of living with a chronic illness? Can I teach myself to be better to myself—to offer words of hope without insult? Or do I need to set the chirpies free from their gilded cages and let them fly away from me into the sky?

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The Day After the Day After

March 4, 2010 at 9:32 pm (Uncategorized)

I honestly don’t know how many months I’ve been getting chemotherapy infusions every-other week to treat my chronic, systemic sarcoidosis. I’m fairly certain that I’m fast approaching (and might have already passed) my two-year anniversary of getting Cytoxan twice a month. How should I mark my long and troubled relationship with this difficult drug? Certainly not with flowers. But should I bring it an offering of, say, cotton bandages—so that I’d be in keeping with traditional anniversary markers that call for cotton gifts on second anniversaries—the next time I’m due for chemo?

A friend asked me how it was possible that I didn’t know exactly how long I’ve been getting chemotherapy? It was a good question. A therapist might say that I am in deep denial about my illness and my treatments. I prefer to think that I’m forward-looking. Why spend time counting up the chemo months I’ve passed, when I have a future to plan and live? But I am not being altogether truthful if I say that my only feelings about chemo are positive and forward-looking.

I also have another problem that involves remembering and chemotherapy. However long I’ve been getting chemo every-other week—22, 23, or 25 months—one aspect of the treatment has not changed: I always feel my worst two days after getting the infusion. Here’s how the treatment unfolds virtually every time. I arrive at the Cancer Treatment Center on Tuesday morning, get my blood drawn, and see my physician. If my red and white blood cell counts aren’t too low, I get a bevy of IV drugs—some to prevent nausea, some to protect my bladder, some to keep me hydrated—before I get the hour-long infusion of Cytoxan. I am usually done by 3:00. At this time, I don’t feel too bad—maybe a little spacey from some of the anti-nausea medications, but definitely functional.

Knowing that this precious feeling of functionality won’t last long, I try to pack in as many activities with Jay and Andrew as I can. Andrew and I have our individual piano lessons in the early evening. I help with dinner preparations and eat dinner with Jay and Andrew. I can sometimes even summon up enough energy to oversee Andrew’s bedtime preparations, read him a passage from our current chapter book, and snuggle with him in his bed until he goes to sleep.

Once Andrew’s asleep, I fall into bed next to Jay, and become lost to the world for many hours. As I wrote yesterday, I usually sleep for fifteen, sixteen, or seventeen hours the night after I get chemo. I hardly stir, don’t dream, and wake up feeling bludgeoned instead of rested. I also feel nauseous. But on Wednesdays, I can control the sickly swirl in my gut with the combination of anti-emetics prescribed by the doctor. The real challenge is to rouse myself from my obliterating sleep so that I can swallow the pills.

Thursdays—of which today is an example—are the worst day in my cycle of getting chemotherapy every other week. I can’t keep anything in my stomach on Thursday mornings. I throw up the expensive prescription anti-emetic pills within minutes of swallowing them. Water, Gatorade, ginger ale, saltines, graham crackers, seltzer water…anything reputed to be soothing and good for an upset stomach comes right back up. Many months ago, Jay noticed how awful my post-chemo Thursdays were. He came with me to talk to the doctor about it. We learned that my violent response to chemo the day after the day after I got the infusion isn’t uncommon at all. So the doctor scheduled me for a return visit to the Cancer Treatment Center each Thursday after chemo. He said that IV anti-nausea medicines and a couple of liters of IV fluid would do the trick. These measures help a lot.

So that’s what I did today. My friend Leah shook me out of my chemo-death sleep and maneuvered me into the car. I shuffled into the Cancer Treatment Center, got hooked up to the fluids, only to have to jog to the bathroom to throw up the cup of tea I knew I shouldn’t have drunk that morning, but had gulped down nonetheless. It took two liters of water to rehydrate me and two bags of anti-nausea medicines to stop the internal heaving.

I’m not writing all this to get your pity. In part, I’m putting this stuff down on the page as part of my resolve to post more on Chronic Town—even when what I’m writing isn’t very literary or even reflective. But it’s true. And there must be some value in recording and trying to make sense of the weird shape and form of my days in Chronic Town.

The other reason I’m rambling about my every-other-Thursday schedule in all its nasty glory is because I realized something important as I slowly walked down the hall into the Cancer Treatment Center this afternoon. I’ve been in a committed, ongoing relationship with Cytoxan for a long time—so long, that I could give the damn drug a cotton gift to mark and symbolize my fidelity to it for two years (or sometime close to that). You would think that in all these past months, I would have recognized, learned, and planned for a constant pattern: I feel my worst the day after the day after I get chemo. When I started dating Jay, I learned in far fewer than two years that he doesn’t like to talk about important topics first thing in the morning, eats a lot of carrots with his lunch, and loves a good cop show on television. So why am I surprised anew every other Thursday? Why am I consistently having to re-learn that I don’t feel rested no matter how much sleep I get, can’t stop throwing up, and only feel better after getting IV medicines and fluids?

I’ve always believed that a little bit of denial is a healthy emotional response to difficult situations. Who could—or even want to, for that matter—walk around fully aware of the myriad ways illness (or any other life-changing event) has altered reality? Isn’t it actually psychologically better that I can’t remember the exact span of months I’ve been getting chemotherapy? A dollop of denial lets me zoom past my second anniversary with Cytoxan—a perfectly good date to ignore. But what of my stubborn refusal to recognize and plan for a pattern that takes place every other week? Why am I shocked each time the Thursday after chemo rolls around and I feel so awful? It’s taking a lot more than a dollop of denial to maintain this willful ignorance.

More significantly, my surprise and horror at how badly I feel the Thursdays after I get chemotherapy isn’t in keeping with my resolution to live as fully and as truly as I can within the strictures that sarcoidosis has created. My goal is to acknowledge the reality that I have a chronic and potentially fatal illness, and then maximize my life within this reality. I can’t strategize ways to make these Thursdays better, or celebrate surviving another Thursday if I willfully continue to “forget” about them between chemotherapy doses. I am dishonoring myself when I can’t remember that this day will be difficult.

Now that I have recognized an attitude problem, what should I do about it? As an initial step, I’ve decided to mark the day after the day after I get chemo in my calendar. I wrote in my Blackberry for my next chemo Thursday to expect a tough day, schedule IV fluids as early as possible, and plan childcare for that afternoon, so I won’t have to entertain Andrew after school on my worst day. Maybe these calendar reminders won’t revolutionize my lousy Thursdays, but as least I am stating for myself that I have a difficult day ahead—one that I will transcend with strength, planning, help, love, and (most likely) a little denial.

How about you? Do you have any difficult days (medical or otherwise) that you refuse to acknowledge on some level? Do you have any ideas for the rest of us on how to recognize that a tough day is ahead so that you can prepare for it—without wallowing in it?

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Chemo Sleep

March 3, 2010 at 6:36 pm (Uncategorized)

I have resolved to write more on my blog–even on the days when I am sick from chemo or sick with neurosarcoidosis. The entries I write on “sick days” won’t be as thoughtful or coherent as the ones I write when I am feeling better. But I am following Plato’s advice not to let the perfect be the enemy of the good. Some “sick day” entries might be just a sentence or a paragraph, but I want to try to post more days than I don’t. Why? It is a good way for an often-housebound chronically ill woman not to feel so alone; it is a way not to surrender to my disease and its treatment; it will help me keep a writing rhythm; and it gives readers a more accurate sense of what life in Chronic Town is like.

I slept sixteen hours last night, with only a brief interruption in the early morning to gulp down anti-nausea medications and use the bathroom. Then I lurched back into bed and was lost to sleep for another half a day.

Post-chemo sleep never feels particularly restful. I don’t remember any dreams, and I awake from it feeling sore—as if I’ve lain on a wooden pallet not a Simmons Beautyrest mattress decked out in thick flannel sheets.

When I do finally awake, I am sometimes mid-stride on my way to the toilet. My sluggish brain only rouses my body when I need to throw up. Funny how my brain doesn’t give way to my maternal instincts and awaken me to give a sleepy good-bye kiss to Andrew before he leaves for kindergarten. My love for Jay doesn’t prompt my brain to wake me just enough to hold him close to me before he has to shave, shower, and leave for work. No, it is just propriety that percolates through my exhaustion and commands my brain and body to lurch towards the toilet. It wouldn’t do to barf in the bed.

I guess my experiences corroborate recent neurological research and findings. Scientists have found that our oldest and earliest memories are the ones that last the longest and hold the most power. This is why Alzheimer’s patients can recall childhood in vivid detail, but can’t remember children and grandchildren. And perhaps why I can summon up long-forgotten potty training—don’t pee or puke in the bed—but can’t do much else after chemo.

It is frightening to sleep for so many hours—especially when I don’t have any memories or experiences to bring from this sleep. On non-chemo days I usually return to full consciousness with some memory of a dream, or of Andrew slithering into our bed in pre-dawn greyness, or of fighting Andrew and Jay for blankets. But this post-chemo sleep is how death must be. It is nothingness. No dreams, no memories, no reminders of life or consciousness. I don’t even turn over in my sleep. I have been a bad bed companion since childhood. I usually thrash, steal covers, and encroach on Jay’s space. But after chemo, I awaken in almost exactly the same position in which I fell asleep. No wonder I am sore.

I would have thought that sixteen hours of shut-eye would give me at least a little energy. But I awaken and want nothing more than to swallow some more anti-emetics and fall back into the black void.

When I started getting Cytoxan to treat my neurosarcoidosis, the doctor and nurses warned me that “fatigue” was a potential side-effect. I thought I might be sleepy at my desk, have a little less energy when playing with Andrew, or want to take an afternoon nap. I had no idea that sleep would claim me so ferociously.

I suppose it makes sense that I’m be so tired. Cytoxan is a poison. Its job is to destroy any new-growth cells—like cancer cells, mouth cells, hair and skin cells, and granulomae, the microscopic balls of white blood cells sarcoidosis creates. Cytoxan is also one hell of an immune-suppressant, which is the other reason I get it—since I follow doctors who believe that sarcoidosis is an auto-immune disease, that the disease is a result of my own immune system attacking the body it is supposed to protect. Whatever good the Cytoxan does, it is a poison—a “cell killer,” as its name literally suggests. On chemo days, I joke that it’s time for my infusion of rat poison.

My doctor told me the other day that I’ve gotten twenty times the dose of Cytoxan as cancer patients. Of course, I get much less of the poison with each individual dose than a cancer patient, but I’ve been getting the stuff for many months more than they do. Its effects are cumulative. It builds in my body and lingers. I am more exhausted and more nauseous after each month of Cytoxan.

Friends have suggested that I try to relish the days of sleep. “Pretend you’re at a spa,” one said. I didn’t have the heart to remind her that if I went to a spa, I’d want to rise early for a massage or a hike. I wouldn’t want to fall into death-like silence and immovability for most of the day.

I keep pinning my hopes on Cytoxan chipping away at the neurosarcoidosis that makes my life so crappy. It seems to be one of the few drugs that effectively fight the disease in my brain.

And maybe practicing for death—morbid as it may sound—isn’t such a bad thing. It makes me appreciate the light streaming into my room, Andrew’s chirpy voice when he came home from school, the metallic ringing of the phone. It was a desire to erase the awful taste of oblivion in my mouth that prompted me to open the computer and write today.

But now, I’ve got to go back to sleep.

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Drew Time

March 2, 2010 at 10:39 pm (Uncategorized)

Kids are supposed to live in the moment. In fact, a few of the books I’ve read on cultivating mindfulness recommend using time with children as an easy way to dwell in the present. Instead of worrying about what to make for dinner or where to go on the next vacation, experts including Jon Kabat-Zinn advocate consciously engaging in playing or reading or doodling with your kids.

My son Andrew, who is now six years old, has definitely kept me grounded in the here and now. I was diagnosed with sarcoidosis when he was only three months old; a few months later, I learned I had a chronic, multi-organ form of the disease. Sometimes it makes me angry that I’ve never had the pleasure of being a healthy mom. My experiences as a parent are tangled with those of sickness.

When I think of Andrew’s infancy, I immediately conjure sarcoidosis memories as well. Nursing him was important for me—and not just because of all the health benefits Andrew accrued through my breast milk. I loved the bonding that came through nursing, and the weird pride I felt in being able to feed my child from my own body. Some of my fondest memories are of his small but sturdy body snuggled in so close to me that the lines separating his body from mine blurred. But I also remember frantically pumping breast milk in a Denver hospital bathroom, after I learned I had to get an MRI with contrast fluid in forty-five minutes. I’d have to wait 2 days for the contrast fluid to clear my system and be safe to nurse Andrew again.

Andrew’s childhood has been shadowed by the specter of my disease and its treatments. He can rattle off my drug names with alarming accuracy. He knows that Cytoxan is chemotherapy, and that chemotherapy knocks me on my ass—and thus makes me unavailable to him—for a few days. “I hate chemo,” he says every-other Monday night before I get chemo the next day. He also has tracked the disease’s course with more accuracy than some of my closest friends. The other day I was complaining to my friend Leah about ongoing abdominal pain. “It’s probably just the sarcoidosis in my liver acting up again,” I told her. Andrew, who passed by on his way downstairs, growled, “Your liver again! I thought we were done with the liver.” Apparently, he clearly remembered the liver biopsy three years ago that had not gone smoothly as the procedure opened a small tear in the organ.

We haven’t been able to take many trips that didn’t involve bringing me to yet another hospital and yet another sarcoidosis specialist. We’re lucky that my parents were generous enough to accompany us on most of these medical adventures, so Andrew doesn’t have too many memories of dingy hospital corridors over-illuminated by harsh fluorescent lights; instead, he recalls watching trucks and construction equipment with Grandma and Grandpa, swimming in hotel pools, and seeing the butterflies at the Natural History Museum in New York. When I have to go see a specialist now, he gets to stay at my parents’ ranch. While I’m getting scanned and meeting with doctors, he has cap gun battles on the open land, hikes to nearby caves for a picnic lunch, and challenges my parents to dozens of bicycle races. I am thankful we have been able to shelter him from some of the storms of my illness.

The mindfulness experts are right. Like other kids, Andrew has a capacity to dwell fully in the moment. And when I am able to silence my inner critic/planner/multi-tasker, I can slide into his slipstream and revel in the now. It’s not that we do anything particularly thrilling. I can’t even play outside very much, because I’m still in a bulky orthopedic boot to try to protect the bones in my foot that were weakened and then broken by sarcoidosis lesions. And the vertigo and blind spells caused by sarcoidosis inflaming my brain stem and cranial nerves make it unsafe for me to go walking. But Andrew doesn’t seem to mind being stuck inside with me. He likes us to sit next to each other and draw. We each create our own truck—or helicopter or bulldozer—but then we add details to one another’s. Well, actually, it’s mostly Andrew who adds zest to my careful renderings—a chipmunk perched on the bulldozer’s blade, a brilliant orb of a sun next to my helicopter, and a flower next to the chipmunk. He strenuously objects to me marring his drawings. We enjoy baking together. We’ve gone through phases—for a while we made challah every Friday for Shabbat; we had a pumpkin-cranberry bread month; chocolate chip cookies are always fun to make. Last Saturday we made hamantaschen (triangular-shaped jelly-filled butter cookies for Purim). It was a big job for me. I’m still getting my stamina back from the long hospitalization. And these cookies are tedious—we had to mix homemade dough; roll it out; drop filling in; shape the cookies into their unique triangular shape; seal all the edges with beaten egg; bake them; and somehow get them off the pan without them crumbling into several million pieces.

But Andrew made the job fun. He has a delightful imagination. At first, we pretended we were scientists mixing up a “volcanic creation,” as Andrew put it. Then he became enamored with the canned cherry pie filling we were using in some of the cookies. We stopped being scientists and instead were bakers at a road-side cookie stand. Then, Andrew decided that merely dealing with the goopy cherries wasn’t enough. No, we had to be a cherry man and a cherry woman. He was Rick Cherry and I was Mom Cherry. As far as I could tell, we weren’t giant cherries exactly, but were living agglomerations of the pie filling—“sloppy and gloppy,” Andrew told me. I’m still not sure what life as Mom Cherry involved (besides talking in a high-pitched voice). After Andrew turned first the cat, then my husband, and then the entire house into Cherry creations, it made more sense. We could pretend to eat anything in the house because it was pie filling.

When I am with Andrew, I pay more attention to everything. He notices details—nuances in an illustration in a book, an especially nice view of Mount Helena as we run errands, the quality of light as evening approaches, the sound of words. His observations bring me out of the nebulous swirl of my thoughts and ground me in the here and now. I’ll follow his lead and truly see the mountain in front of me.

Andrew is also re-shaping the way I view and value time. I am an inveterate planner and organizer. Very few things rival the satisfaction I get from making—and completing—a complicated “to-do” list or agenda. Maybe I got into the habit of planning and organizing each hour of the day because of my work as a free-lance writer. Since I usually work alone and have to impose deadlines on myself, I’ve grown accustomed to plotting my work time and free time. Ever since I got sarcoidosis, I’ve wanted to plan all the more furiously. Both the disease and the treatments I get to fight it exhaust me. The chemotherapy is particularly problematic. I “lose” days after each dose to fatigue, nausea, and vomiting. It’s rather like getting a stomach flu twice a month. I put pressure on myself to accomplish in one week what used to take two. I can get almost fanatical about managing my time. When I have decided to spend an hour resting or writing, I get annoyed when I have to change direction and, say, talk on the phone.

“What shall we do today?” I used to ask nearly every Saturday. Now that Andrew is in kindergarten all day long, his free time is vastly diminished. I thought he would value his weekends more and want to fill them with the activities he can’t do during the week. Although I would feel more comfortable if I could construct a timeline for each weekend, Andrew is content to putter around the house and let the day unfurl, like a flower opening its petals in sunlight. It’s not that he is agoraphobic and doesn’t want to leave his home. He loves playing with friends, participating in his soccer games, going to events at the Children’s Museum, or hanging out at the library. Rather, he’s reluctant on a Saturday morning to schedule these activities. When I actually thought about this—instead of nudging him to make a plan—Andrew’s attitude made sense. His week days are thoroughly regimented with school and after-school activities. If I had my way with weekend planning, his open Saturdays and Sundays would be just as structured as school days. If we lurched from activity to play date to errand on an arbitrary schedule, I would be taking away the freedom of his downtime. Once I stopped trying to herd Andrew and actually hung out with him, I noticed that he hasn’t yet started prioritizing his activities based on external markers. By this I mean that he doesn’t value playing soccer or attending an art day camp—activities that parents and teachers approve of for all the skills they develop—more than riding his bicycle in the driveway or drawing at the kitchen table.

Instead of pushing Andrew to make a Saturday schedule, I consciously decided to try his way. It was—and remains—tough for me not to tame all that unfettered time. But when I quell my anxiety and go with the proverbial flow, I have a lot of fun with him. It is refreshing to be with someone who really does what he wants to do—not what he thinks he should do, or what other people would do, or what is proper to do. Playing “Star Wars” with Legos—which involves pretending to be a character from the movie and then flying Lego space ships or launching attacks in this persona—is a ton of fun. So are making baking soda volcanoes in the kitchen sink, using Play Doh to make monsters, and digging deep holes in the ice and snow in front of our house.

Once I let Andrew teach me about open time and the myriad ways to fill it on the weekends, I began to try to apply these lessons to my week days. I haven’t thrown away my Blackberry, and with it my calendar, memos of goals, and numerous lists of tasks to accomplish. And I don’t plan on chucking them. But I have tried to look at my scheduled activities with honesty—and with compassion for myself. I even went so far as to hire a life coach. At first I was a little embarrassed to pay for someone to help me figure out better ways of living. But the money I spent for phone sessions with Sandra Ahten was one of the wisest purchases I’ve ever made. Our focus was primarily on giving me tools to lose weight, but Sandra also pushed me to prioritize my goals and then establish realistic plans to work towards achieving them. With Andrew’s example and Sandra’s expertise, I stopped blindly following old routines. Did I actually want to start taking a yoga class? Or did I feel like I should take a yoga class because many of my friends do, and because yoga is universally acknowledged to be good for you? What about writing in my journal? I used to have enough time and energy to write a few pages every day. This was a wonderful way to generate new ideas for writing, sort through problems, and to sometimes vent on the page. But I have so little time to write at all these days. My neurosarcoidosis has made reading and writing difficult. Did I want to devote some of my precious “word time” to my journal? When I had finished a first review of my schedule, I was shocked. Many of the tasks in my calendar were for activities that I did only because I thought I should, or because they were old habits (like the journal) that didn’t fit into my current life.

In his book, Coming to Our Senses, Jon Kabat-Zinn wrote: “What is required is nothing special, simply that we start paying attention and wake up to things as they are. All else will follow.” This is an admirable goal. By edging closer to embracing “things as they are,” rather than desperately hoping and demanding for them to be “as they should,” my daily life improved exponentially. As I explained in yesterday’s post, I pushed myself to stop expending my limited time and energy on an uncertain future and instead concentrate on making the most of the day I was living. Spending time with Andrew really does help me stop over-intellectualizing and over-planning and simply play—or bake cookies, or watch a movie, or build a tower of blocks.

However, Andrew can’t apply his natural gift of present-mindedness when it comes to my disease. He struggles mightily with it. I can’t imagine how difficult it must be for him to make sense of this sarcoidosis that has been his bed-fellow since birth. Most adults have less of a grasp of what this sickness involves than Andrew does. Nevertheless, despite his impressive vocabulary and his memory of all the different medications I take, he is still just a young boy. I didn’t realize until a few months ago that he was somewhat afraid that he could catch it from me. He has since come up with a nifty way to explain auto-immune diseases: “Your body’s armies have gotten confused and don’t know who to fight. They are attacking their friends instead of bacteria or viruses.” And he grasps the consequences of all the immune suppressants I take in the hope of stopping the disease’s rampage. “It’s like your body’s army has gotten really lazy,” he said. “All the soldiers are taking naps or watching movies and don’t care about invaders.” Yep, that sums it up nicely.

While I have been pushing myself to apply the lessons of not structuring the weekend to my disease, Andrew resists this shift. I have been moving slowly but inextricably away from seeking a cure for sarcoidosis. As I wrote yesterday, it is not because I don’t desperately want to be cured. But I don’t want to wait to be cured. I was deeply moved by Elizabeth Edwards’ Resilience—a book that lyrically and thoughtfully explores how to deal gracefully with adversity. Her advice to accept the new reality created by illness or other challenges, and then to live as fully as possible within the new boundaries of this changed life, resonated deeply. Instead of waiting to get my “old” life back, I needed to get acquainted with my new life and discover how I’d live in it.

My little boy just wants his Mommy well. He is fixated on me being cured. When he was younger, one of his nannies told him every day that the chemotherapy would cure me. Her intentions were good, as were my mother’s when she devised a “chemo chart” that counted down the number of Cytoxan infusions left in my regimen. Also, Jay and I have often talked about going to China “when Mommy’s well.” And I’ve wanted Andrew to know what I used to do, before I gained one hundred pounds on massive doses of prednisone. So I told him about the bike races, the hikes, and the traveling that were part of my life “when I was well.” Not surprisingly, Andrew wants me well. Haven’t I followed the doctors’ orders and gotten chemo? Haven’t I stayed in the hospital when the doctors want me there? So why isn’t Mommy well? He was furious when I had to go back to getting chemo every-other week and stop tapering both the dose and the frequency of my infusions. “That’s not fair,” he screamed. It sure isn’t.

I’ve been trying to shepherd him out of the shadows cast by the looming fixed points of “Cure” and “Sickness.” When he talks wistfully about doing some activity or another after I’m well, I talk gently about not worrying about whether I’m well or sick but instead to think about the day we have together and the many things we can do in it. I want him to see what is possible now, instead of fixating on where I fall short and how much better life will be when I’m cured. He is reluctant to let go of this black and white world. I don’t blame him; it’s a constant struggle for me, too. Last weekend, when I was feeling much better than I had in weeks and Andrew and I baked hamantaschen and I cooked complicated Thai food for dinner, Andrew beamed at Jay and me across the table. “I’d say you’re over eighty percent well, Mommy,” he said proudly. I didn’t want to tell him it’s “wrong” to concentrate on a cure, that very few of us are ever one hundred percent well, that we begin to fall apart and move towards death the moment we are born. No, that would not be helpful to him. So I blathered again about trying to enjoy every minute we have together, about not spending time worrying how well I was, or when I would feel better. Of course these are exactly the same lessons I’m trying to learn, the same precepts I struggle to accept.

I tell myself that growing up with a chronically ill mother won’t damage Andrew; I tell myself that both he and I can move into the more realistic (but more frightening-looking) world of truths that are neither strictly black nor white but are foggier and greyer; I tell myself that we can learn from each other. I can’t imagine surviving in Chronic Town without Andrew. Because of him I want to keep fighting for a cure. Because of him, I won’t give up the vision of me being well.

One of the ways that Andrew helps make life with neurosarcoidosis livable is by pushing me out of bed and into a world of play, imagination, and ongoing adventures. I don’t need to be one hundred percent well to open myself up to the miracle of my son. I just need some Star Wars lingo, the willingness to pretend we’re on a spaceship headed for the planet Zorbidor, and the patience to build a tower, no matter how many times the cat—or my disease—knocks it down.

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Pandora’s Box

March 1, 2010 at 7:22 pm (Uncategorized)

In the myth about Pandora opening the box that Zeus forbade her to, she is supposed to have let sickness, evil, and work escape into the world. Only after all that misery poured out did hope flit from the box. Hope is supposed to be an antidote to all the ugliness that escaped before it. Although hope can’t undo the havoc preceding it, at the very least, hope is thought to balance the destructive forces Pandora inadvertently unleashed. However, I don’t agree with this homage to hope. When it comes to living with a chronic illness, I wonder if hope can’t be just as damaging as the rest of the junk Pandora let loose.

Hope is a curious thing. People always encourage me not to lose hope—as if giving up hope means giving in to the sarcoidosis I’ve been fighting for over five years. But I have found that having too much hope—whether it be in a new medication’s promise to cure me or in my own stamina to survive difficult treatments like the chemotherapy I get every other week—poisons me. Hope raises my expectations; hope makes me believe that remission is just a week away. And when I turn the corner and am not cured, I feel lost and desolate.

When I suffered my recent relapse and landed flat on my back in the hospital for nine days, I was consumed by despair and wanted to give up. It wasn’t just that I had a new neurological symptom—terrifying lapses in vision. I felt lousier and bleaker because I had just experienced a taste of a different life—one that didn’t involve hospitals, searing pain, and weird neurological problems. I had listened to hope’s siren song and decided it was true. This meant that I had to deal not only with a neurosarcoidosis flare-up, but also with my dashed hopes.

Just a couple of months earlier I had thrilled in the good report I received at my semi-annual check-up with a sarcoidosis specialist. I had survived a challenging year of getting chemotherapy twice a month; I had made it through months of taking Thalidomide and getting Remicade infusions. And it looked like it had all paid off. I wasn’t instantly and magically cured, but I steadily improved. I had days without vertigo or head pain. With the doctor’s approval, I started tapering down on the drugs that had engineered my recovery. I could chip away at my daily dose of prednisone. Even better, instead of getting chemo every other week, I could wait two weeks between doses, and then—if all was well—I could transition to getting chemo once a month. It was ecstasy just to imagine having three whole weeks between infusions of Cytoxan and all its nasty side effects —nausea and vomiting, fatigue, and mouth sores.

By imagining those luscious three weeks, I allowed hope to seep under interior doors I had kept resolutely closed. Instead of enjoying and living as fully as I could during each precious day of better health, I heeded hope’s prodding. Rather than celebrate feeling better—and sharing this joy with Jay and Andrew—I strayed to dwelling on the better future I would have. I didn’t use my new extra energy to plan family outings close to home. Instead I began to yearn to visit Palau again and to travel to east Asia. I did the same thing with my work. I didn’t make much progress on my memoir or on this blog, but I used a lot of time and energy worrying about my agent, talking about all the writing I would do, and wondering what I should write after my book. I was able to start exercising on a regular basis. I quickly moved from delighting in strengthening my beleaguered body to expecting myself to be in good enough shape to go on long bike rides with Jay in the spring. I e-mailed Andrew’s kindergarten teacher and signed up to volunteer in the classroom. It would have been more meaningful to my son if I had focused on building Legos and putting him to bed at night. I forced myself to taper down and nearly off my narcotic pain medication so quickly that I made myself slightly ill with withdrawal symptoms.

And then, out of nowhere, the blindness came, the vertigo returned, the pain in my head was like a blow to my brain. As the pain intensified—and I could no longer control it with medications at home—and as the number of blindness episodes increased, I had no choice but to follow my doctor’s advice and go to the hospital. The very familiarity of the experience—the same kind and gentle nurses cared for me; the pleasant room with its view of the snowy hills seemed to have been waiting for me; the pumps delivering drugs and fluids wheezed and clicked in a rhythm I recognized–made it seem that I had made no progress. I felt like no time had passed since my last stay, that the weeks of better health were simply a mirage. Once I had tasted the sweetness of a normal life, returning to sickness was all the more bitter.

By eschewing hope, I am not resigning myself to a life of despair—though I’m sure some readers will advise me to start taking anti-depressants. After all, popular wisdom is on hope’s side. “Once you choose hope, anything’s possible,” Christopher Reeve said. “Hope never abandons you, you abandon it,” George Weinberg believed. Even Emily Dickinson, whose poetry more often than not dwelled on darker thoughts of death and obscurity, wrote, “Hope is that thing with feathers that perches in the soul and sings the tune without the words and never stops… at all.” I could fill a dozen pages with paeans to hope. They sound good, and I’m sure they even look good printed on motivational posters along with photographs of towering mountains or the sea crashing at the shore. But hope does not help me.

There’s an enormous difference between hoping for a cure and believing I’ll never be well. It is a fine line to navigate, but a line nonetheless. For me, not hoping does not mean that I won’t fight this disease with every weapon I can find. Not hoping does not mean that I have resigned myself to an untimely death or to a permanent half-life as an invalid. Not hoping does not mean that I don’t believe I can be cured or that I will be cured. Instead, by not hoping I pay more attention to the day I am living—to its battles and rewards. I’ve written before about surrendering my black and white worldview of cure and disease for the truer palate of grey that characterizes chronic illness. Sarcoidosis and other chronic, auto-immune diseases aren’t like strep throat or even cancer. There is no certitude that I’ll be cured. Certainly, I can go into remission. But counting on that remission—or making it a condition of my happiness—makes living without remission a difficult prospect for me.

When I am able to give up hope, I am happier. Maybe it’s a paradox, or maybe I’m just nuts. But hope too often whispers thoughts of the future in my ear. Hope lulls me into waiting to be cured. Better that I research the new medications I’m taking, investigate whether acupuncture can help with my pain, whether starting an “anti-inflammatory diet” can play a role in making me feel better. When I let hope carry me into a nebulous future, I find myself waiting for a week of “feeling good” to write, to start a project with Andrew, to plan a special dinner with Jay. That week rarely comes, and I remain in stasis— with hope chirping in my ear. But when I push hope back into its box, I focus on what I have here and now. I have about an hour a day to write before my neurological problems rear up; I can write a blog post in an hour or a couple of pages in my book. Maybe I can’t volunteer twice a week in Andrew’s classroom, but I do have enough stamina to bake cookies with him and read a good book to him. Although Jay and I can’t go to Laos, I have enough clarity to talk with him about his work, what he’s reading, how he is doing. It’s like Jean-Paul Sartre said in Existentialism is a Humanism. “One need not hope to undertake one’s work.”

I have much work to do. I have a son to raise, a husband to love, a book to write, friendships to nourish, a body to recondition, and a disease to vanquish. I don’t have time for hope.

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