Living Small

May 20, 2010 at 12:08 am (Uncategorized)

Yesterday I went with Andrew to our back-to-back piano lessons to practice for the next recital. The day before, I popped into my office and worked on my book for two hours. When I came home that evening, I felt like stretching my legs, so Jay, Andrew, and I went for a short hike up the hill behind our house. I was a little sore on our family walk because the day before, I had put on my rollerblades for the first time in over a decade and given Andrew his first in-line skating lesson. And the day before that, I had worked on my book for a solid eight hours.

It sounds like a normal life, doesn’t it?

I’ve been feeling better for the past couple of weeks. I’m not sure if my improved health is due to starting new drugs (Rituxin and Cellcept), stopping a difficult drug (Cytoxan), or proper planetary alignment. I’m a little nervous that, by proclaiming I’m feeling better, I’ll somehow jinx myself and return to 24-hour vertigo, a throbbing head, and bruising fatigue.

I cannot describe how thrilling it is to return to aspects of my “old” life—the activities I took for granted before I became seriously and chronically ill with sarcoidosis. Before I got deported to Chronic Town, I could get preoccupied with “big” questions: was I fulfilling my potential as a writer? Was I happy? How many children should I bring into the world? When should we move overseas again? Once it became clear that the sarcoidosis I was diagnosed with in 2004 was going to make having more babies or moving to Cambodia impossible for the foreseeable future, I deeply mourned the passing of these dreams. I didn’t want to believe that I would never again deliver a baby or stand on the other side of the world, but I did have to release myself from these dreams for the time being. Otherwise I would remain mired in loss.

Although I still feel a twinge when I hear about someone moving to Pemba or Qiqhar or when I meet a mother of four boys, it is nothing compared to my sadness at losing control of my life’s “small” details. Before landing in Chronic Town, I didn’t think of working on a short magazine piece, giving Andrew a bath, cooking dinner, folding laundry, or walking around my neighborhood as accomplishments. However—after two years of disabling neurological problems and almost equally disabling side effects from the chemo to treat the neurosarcoidosis—I understand that there’s nothing “small” about caring for myself, my child, and my husband.

This change in focus—almost like turning around the long lens of a telescope—is the most profound lesson chronic illness has taught me. Once, I gazed at the horizon and longed for the unseen continents behind it. During all the days I spent in bed, too dizzy and disoriented to join my small family for dinner, I began to twist the telescope around. Instead of seeing the fuzzy shape of far-off lands, the lens magnified the world around me. Rather than squint my eyes to catch a glimpse of some vague writing project, I’d try to put words onto the page in front of me. Instead of moping about the babies I can’t have, I try to concentrate on the beautiful child who shares my life. Although it would be nice to some day visit Pemba, I’m right now more interested in exploring the trails around Helena. It’s been two years since I’ve walked into the pine trees and felt the spring sun on my back.

Before I went to Chronic Town, I didn’t understand how gigantic the “small stuff” can be. A cup of scalding hot Earl Grey tea; talking to my friend Amy on the phone; watching pancake batter bubble on the skillet; buying new shoes; writing a whole chapter of my book; meeting Jan for coffee; talking about writing with Martha; watching three episodes of Medium in a row with Jay; making Andrew practice piano; sharing lunch with Molly; finding just the right present for my mother and forgetting to mail it; sweeping clean the wood floors of the kitchen. Once the neurosarcoidosis lashed out, I lost so many of these “small” delights so quickly. I could have lost them forever.

I am tempted to dive back into my “normal” life—full speed ahead. However, it is wiser if I pace myself. I still have some sarcoidosis symptoms and I don’t have the stamina to go through a full day without a couple of rests. I don’t want to over-exert myself and cause a relapse, as I’ve done in the past. Also, I don’t want to lose the intense pleasure and gratitude that comes with each cup of tea and page of writing.

If I am miraculously returned to good health, I don’t want to forget the truths I’ve discovered in Chronic Town. Just because something is close at hand or familiar doesn’t mean that it is commonplace or insignificant. Although the wonders I am re-experiencing are small, they are mighty.

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I Take Full Responsibility For Everything Wrong With The World (A Mothers’ Day Reflection)

May 12, 2010 at 4:46 pm (Uncategorized)

Andrew got sent to the principal’s office two days in a row last week. He was, in the principal’s words, “using his hands instead of his words to express himself.” He shoved a fellow kindergartener in the lunch line one day, and during recess the next, he was playing roughly and wouldn’t stop tackling another kid when told to do so.

Here is what I thought after I got off the telephone with the principal: “My son is a thug.” Then: “It’s all my fault.”

I don’t think I’m the only mother who worries about the quality of my parenting skills. I know from the self-flagellating comments of my women friends with kids that the air is so thick with bad mommy vibes that it’s sometimes a challenge to find enough oxygen to breathe. It’s hard to be a mother in 2010 and not feel guilty about the job I’m doing. I don’t have much to add to the astute cultural critiques that writers like Judith Warner in Perfect Madness: Motherhood in the Age of Anxiety or Susan Douglas in The Mommy Myth: The Idealization of Motherhood and How It Has Undermined All Women have already produced. I know that for a variety of reasons—ranging from a political and cultural backlash against the feminist movement to economic insecurities to the rise of right-wing television pundits—women today are pummeled with guilt-provoking rhetoric about motherhood.

If you pay attention to the constant mixed messages women get, you’ll get a fine case of whiplash from the hard and fast serves coming at you from both sides of the net. You’re a bad mother if you work outside the home and put your kid in daycare because you are depriving him of maternal love. You’re a bad mother if you stay at home and don’t work because you’re depriving him of seeing you as an independent, equal parent. You’re a bad mother if you drive your kid around without proper safety seats and boosters—like Britney Spears. You’re a bad mother if you don’t spend your life driving your kid around everywhere in various carpools to school and after-school activities. You’re a bad mother if you don’t make your kid pick up his toys. You’re a bad mother if you make your kid pick up his toys. You’re a bad mother if you are too lenient. You’re a bad mother if you’re too strict or snap at your kid. You’re a bad mother if you push your kid too hard in sports. You’re a bad mother if you don’t push your kids in sports and teach them the valuable lessons of winning and losing. Dr. Laura shrieks that a mother must stay home. “Get to work,” Linda Hirshman ordered women in the American Prospect in 2006. You get the idea.

Several writers have turned to memoir or personal essays to explore the pitfalls and mixed messages of post-modern motherhood. Ayelet Waldman’s Bad Mother: A Chronicle of Maternal Crimes, Minor Calamities, and Occasional Moments of Grace or the contributors to Kate Moses’ collection Because I Said So, have reinforced my belief that it’s damn confusing to know how to be a good mother, and that it’s a quick slide down a very slippery slope from pondering this question to winding up at the bottom of a hill of guilt, broken and bleeding.

I rode Andrew’s trips to the principal’s office to the bottom of that hill, and felt very tattered indeed. You know a bad mother by the sins of her child. A kid that pushes other kids on the playground, who spends his lunchtime with the principal getting lectured about appropriate boundaries, has a bad mother. Me. Then to make my tumble down this rocky slope of guilt and self-recrimination even more harrowing, I had to roll through the cactus patch of my sickness. I’m especially a bad mother because I have been sick for all of Andrew’s life. He was only three months old when I was diagnosed with sarcoidosis. And he has grown up marking not only months on the calendar but treatments I have failed and organs attacked by the disease.

All these thoughts flashed through me—like electricity looking for the ground—in the few seconds that followed the phone ringing and the principal explaining why she was calling. Then, with a jolt that signaled the current had found its target, I almost doubled-over with that realization that my sickness was the source of his problems. My son is struggling and it is because I have traumatized him with my sickness. He is flailing, trying to make sense of why his mother is in bed so much, why she had to get chemotherapy, why people lower their voices when they talk about her illness. And he hasn’t had the help he’s needed in coming to terms with his grief at having half a mom instead of the whole one he’s entitled to because I’ve been laid up with and laid low by sarcoidosis.

“My husband and I should make an appointment to come in and discuss this with you as soon as possible,” I said to the principal.

“I’m not sure that’s really necessary,” she said. “I mean, you are always welcome to come in and talk at any time, but I wouldn’t blow this out of proportion,” she added.

I wonder if by blowing things out of proportion she meant my assumption that Andrew would wind up a serial killer or a meth addict—all because of me.

“The piece I’m not sure I have conveyed to you,” I said haltingly, and then, gaining speed, “is that Andrew has had a tough year. I’ve been getting chemo, and this has meant he’s had to see me really sick, and I’m not sure if this has really affected him, and he’s our only child so I’m not sure what kind of reaction is appropriate, and I don’t want this bad behavior to continue, and…”

The principal mercifully interjected, “I know about your health problems and treatment.” It turns out that Andrew’s teacher keeps the principal apprized of the home life of all her students. I felt blessedly relieved to be spared the chore of explaining sarcoidosis, chemo, and my uncertain prognosis.

“I’m really not overly-concerned about these two incidents,” she said. With these words, I took my first real breath in several seconds. Her voice was crisp, yet not unkind—the perfect voice for a principal. “And I wouldn’t necessarily connect these incidents with your illness,” she went on. “When Andrew and I spoke yesterday he told me how happy he is that you are done with chemo. He doesn’t strike me as upset about you at all.”

I felt cleaner and clearer than I have in months, as her words sunk in. Her interpretation delivered the sense of absolution that Confession had bestowed on me as a child. I am not rotten—diseased not only in my flesh but in my self—and I am not contaminating my beautiful boy. She went on talking in her lovely authoritative tone. I believed her assessment because of her years as a teacher and principal.

“Again, I wouldn’t make too much of these episodes,” the principal said. “This is typical behavior for young children—especially boys. It is a matter of Andrew needing to learn to use words instead of hands, as we say around here. From the day they start school, we emphasize that all students must communicate their feelings and desires, not push or hit.” She explained how the teachers distinguish between “tattling” and “important telling” and other communication tools they give students. Andrew’s pushing and wrestling episodes weren’t crimes against humanity, as I had thought, but rather a mostly good kid being bad in a fairly minor and usual way. I was relieved at her interpretation. And she liked my idea of extending “the consequences” for his poor behavior to home-life. She thought that taking away his privilege to spend any time on the computer (he has recently discovered the joys of Legos’ web site, which includes a few games and lots of flashy product placement) was an “appropriate consequence.”

Jay and I later decided that Andrew needed to make amends, or at least try to, as part of his lesson about proper communication. After shedding many tears and seriously dragging his feet, we went to the house of the girl he had pushed in the lunch line, and he apologized to her face-to-face. We felt fortunate that we are friends with her family, and that her mom didn’t make a big deal out of it. Then we made Andrew write an apology to the boy he had tackled. We were going to make him deliver the note, but he became tremendously overwrought. Maybe we wimped out on the punishment front, but we figured the note in itself sufficed—so I delivered it. Again, we are lucky that we are friends with this kid’s family, and that they were graceful about it all.

Once apologies had been made, Andrew had been routinely lectured, and we settled back into our normal routine (without computer time for the boy), I spent several days harshly judging myself for the first thought after the principal called—the one about Andrew becoming a thug. Why didn’t I believe in my son? Why is it that I’m always relieved when our friends, family, and acquaintances praise him for his excellent behavior after they’ve spent time with him? Why do I have so little faith in the young man he is becoming?

I realized that this new line of self-critique was my same old diatribe against myself, dressed up in new colors. The answer to these questions I directed at myself: because I’m a bad mother. You see, only a bad mother would so quickly assume the worst. I decided to cut myself a little slack. Andrew is our first child. I am still learning what is a serious offense in kindergarten and what is not. I am learning as we go along. I must use the wisdom of those—like Andrew’s principal—who have more experience than I do.

It probably will come as no surprise if I tell you that I spent most of Mothers’ Day feeling guilty—and like a bad mother. I was exhausted after having a severe reaction to Rituxin (one of the new infusion drugs I’m now taking) and from a busy Saturday with Andrew and Jay. I felt compelled to spend time with Andrew and Jay on Mothers’ Day, when what I really wanted as my reward for motherhood was to be left alone to take a long, uninterrupted nap. But instead, I responded to the commercial schlock about Mothers’ Day—gauzy notions of snuggling with my child and sniffing roses—rather than the pull of my own heart. I wanted time with Andrew, but also some time to myself.

It’s a sensible formula—I want time with Andrew, but also time to myself—and not just for Mothers’ Day. If I can remember to listen to myself, my husband, and my son, and ignore the barrage of mixed messages… If I can believe in myself and my kid… If I can remember I didn’t choose sickness, and that Andrew and I can both learn to be better people from the experience of my illness… If I can just lighten up… Careful, I’m edging towards that slope of guilt. A lot of us mothers—healthy and chronically ill—spend too much time on the edge of this hill. Let’s all back up an inch or two.

Happy Belated Mothers’ Day to all the great mothers I know.

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Blind Men and Elephants

May 5, 2010 at 6:02 pm (Uncategorized)

Last week I got what I hope will be my final dose of chemo. Just writing the words, “final dose of chemo” gives me a thrill.

Even before I went to visit the sarcoidosis expert in Ohio, I had decided to ditch chemo. Getting Cytoxan infusions every other week had become almost as bad as the disease. Since Cytoxan builds up in one’s system, every dose got a little harder and the hideous side effects lasted a little longer. When my local doctor told me I’d received ten times more Cytoxan than his cancer patients, some switch clicked inside me. I was no longer willing to make myself so violently ill in hopes of getting cured.

I wasn’t sure what the sarcoidosis doctor would say about my plan to stop, though. He had recommended the drug for me in the first place, and whenever my neurosarcoidosis flared, he had urged me to increase my dose. I like to be in charge of own medical care, but I still want to be a “good patient.” I fretted that he would become angry if I insisted on stopping chemo. Would he refuse to be my doctor? Would he help me devise a treatment plan that doesn’t involve Cytoxan—if he still wanted me getting chemo and I dug in my heels?

It’s beyond the scope of what I’m writing today, but the doctor-patient relationship—especially when the illness that brings the patient to the doctor repeatedly is chronic—is complex and worth pondering. But for the purposes of this essay it’s pertinent that my relationships with doctors—especially with the high-profile, research gurus—never feels wholly like two equals meeting. I try to brush off the feeling that I am a supplicant seeking wisdom from my betters, but I haven’t entirely succeeded.

Fortunately, all the worst-case scenarios I had envisioned came to nothing. The doctor agreed that it was time ti try something different. He recommended I try a drug called CellCept (Mycophenolate Mofetil). Although CellCept is used primarily for organ transplant patients, the drug is showing some promise in fighting sarcoidosis. It is in the same broad category of drugs as Cytoxan, but it isn’t quite as harsh. I’ll take it daily in pill form, instead of having to give up most of a day for an infusion, as I did with Cytoxan. I’m glad that CellCept won’t be quite as devastating to my already-exhausted body. But the drug has its own set of nasty side-effects. It will greatly weaken my immune system—to the point that I won’t be able to get vaccines—and I stand a greater risk for contracting lymphoma and skin cancer in the future. But I believe these risks are worth taking. CellCept should suppress my body’s over-ambitious production of epithelioid histiocyte cells, which are the giant immune cells at the center of granulomas (the balls of cells that characterize sarcoidosis and that riddle my vital organs).

In addition to taking CellCept, I will continue getting monthly infusions of Remicade (Infliximab) and periodic infusions of Rituxin (Rituximab) to fight two additional aspects of sarcoidosis. One of the joys of the current medical understanding of my disease is that it’s very much in the blind-men-describing-an-elephant stage. Doctors and researchers can identify various factors that they think are connected to how the disease works, but they can’t yet explain how or why they fit together. They know that epitheliod histiocytes are at the center of the granulomas – hence the CellCept. They also know that multiple T-Cells cluster around each epithelioid histiocyte. These T-Cells excrete something called “tumor necrosis factor” or TNF, which is an essential part of the body’s inflammatory immune response to all sorts of invaders, including cancers. But in sarcoidosis patients, T-Cells are apparently too zealous, and the over-production of TNF is believed to be, well, a Bad Thing. (Unfortunately, the current medical thinking doesn’t seem to be too much more advanced than that admittedly reductive description.) Remicade inhibits my body’s production of TNF. So by limiting the amount of TNF in my system, we can hopefully keep the sarcoid granulomas from forming—the same goal as the CellCept acting on the histiocytes, but from a different angle. The Rituxin targets granuloma from a third vantage point. B-Cells cluster around each granuloma’s central hisiocyte. Researchers don’t understand precisely why B-cells are involved in this way. But they think that zapping B-cells with drugs like Rituxin helps certain sarcoidosis patients. I responded very well to the initial doses of Rituxin I got after my most recent neurosarcoidosis flare-up. By persisting with the drug, we hope I can made additional improvements. I like to envision these three drugs as highly-trained snipers—each taking aim at sarcoidosis from a unique angle.

I wish I didn’t have to take any medicines for my sarcoidosis. I still cling to the belief that the disease might spontaneously remit. The Ohio sarcoidosis expert reminds me at every visit that I have a ten percent chance of this happening every year. Short of this, I am relieved to be free from chemo—at least, for the time being. That feels almost as miraculous and magical for me. I am grateful for this good news and for a new treatment plan.

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May 3, 2010 at 3:23 pm (Uncategorized)

I am home after first meeting with the sarcoidosis expert in Ohio and then from a few days of vacation with my sister. I had such high hopes for myself in terms of writing during this trip. I wanted to post a daily update on this blog, so that I could convey the expert’s treatment recommendations. It seemed like such a small goal—to write a daily essay about my medical pilgrimage. I am fortunate to have loyal blog readers—people who have kept coming to this site even after I’ve disappeared for weeks, or when I’ve had nothing but doom and gloom to report.

This trip, I had good medical news to share. Even better, I had non-medical good news to share. Andrew and I were able to have a vacation together with my sister—after I was done with doctors and Jay had to fly home for work. For the first time in many months, I was responsible for my six-year old son, and our only mandate was to have fun. It felt like a milestone I wanted to share with all of you who have stayed steadfastly by my side during two years of chemo, three years of neurosarcoidosis, and many months of difficulties.

But I wasn’t able to write regularly on this trip. Thankfully, I didn’t rupture an ankle ligament (or two) or break a few foot bones (as I have on my past two trips to Ohio and our previous attempt at a vacation). My inability to find the time or the energy to write was much more prosaic and less cataclysmic. It was almost fun to show Andrew the different street corners where I’d popped ligaments—because I’ve gotten so much stronger and healthier since then. But I also realized on this trip how weakened the two years of chemo and the many years of disease have left me. It took all of my focus and all of my willpower to make it through my appointment with the sarcoidosis expert. Then, I had to restart all my internal engines and dig down deep inside myself to summon up energy to have a vacation—first with Jay and Andrew, and then with Andrew and my sister.

After a day strolling around the zoo (or even packing up our stuff and catching a ride to my sister’s), I felt like I had hiked for twenty miles. I looked meaningfully at my computer every evening—and felt guilty that I wasn’t updating readers—but I lacked the energy to pull the machine out of its case, much less try to write.

And then, on my first day back in Montana, I followed the expert’s advice and got one more Cytoxan infusion—while I wait for a new medicine called Cellcept (which will hopefully replace Cytoxan) to build up in my system. This last dose of Cytoxan has been especially brutal—maybe because I was tired from the trip, maybe because I was sad because our dear cat died the day we came home, maybe because the Cellcept interacts with Cytoxan…who knows? I have had energy for nothing but sleeping and nausea.

I am emerging from this dark place. Please know that I’ve been thinking about writing, meaning to write, planning to write, but I just haven’t been able. All is well. I have a new treatment plan. I might have found a way around some of the communication issues that make it difficult for my local doctor to work with the sarcoidosis expert. I am recovering from what I hope is my last dose (ever) of Cytoxan. I will return here tomorrow or the next day and give you the details.

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