Hair Schmair

February 27, 2014 at 3:33 pm (Uncategorized)

When my hair started to fall out in clumps after my latest round of chemotherapy, I desperately wanted not to care. There’s a big sign at my doctor’s office that says, “I’m too sexy for my hair,” and it makes me smile every time I see it. Getting regular treatments at the Cancer Treatment Center had taken away the shock at seeing women and men as bald as cue balls.

For almost my entire life, I’ve had long hair. Jay loved it. Andrew loved it. When Andrew was a toddler in my lap, he’d grab a wisp of my hair and run it back and forth across his face. “Tickles,” he would chuckle.

I knew in advance I was going to lose my hair. It seemed like a waste to let all those long, red curls go to waste and just fall out. So when I was in the hospital this fall and starting the Cytoxan, my incredibly nice hair stylist Shelly came out to the hospital and gave me my first pixie cut. In the process, she helped braid up the long hair I was losing so I could send it off to Locks of Love (a charitable organization that makes human hair wigs for kids going through chemotherapy – check them out at http://locksoflove.org/). After the initial shock, we all admired the new, more aerodynamic me. Once that was done, I figured I was ready for when the chemo took the rest of my hair. How different could it be to go from not much hair to no hair? “Hair is hair,” I told myself. “It’s not what defines me. It’s just hair.”

Then I awoke one morning to find a pile of short hairs on my pillow and a bald spot on the back of my head. “I can just comb over this one spot,” I thought, and proceeded to gel my hair into what looked like a close approximation of a balding man’s comb-over. A couple of morning’s later, I discovered another heap of hair and a bald spot too big to complete the swoosh look. Plus, my scalp was hurting like hell. Apparently, chemo traumatizes hair follicles, and it’s normal to have an aching head until the hair is out of the follicle. It was time to shave my head.

I’m not sure what I would have done—probably just keep re-arranging my remaining, throbbing locks, until nature ran its course and they all fell out—if my friend Barb hadn’t offered to shave her head with me. Being the woman she is, Barb made it sound like it was no big deal to become bald with me. “I want you to know there’s another big, bald, and beautiful woman in our town,” she told me. “Besides, it’s all coming off in a few years anyway when I become a Buddhist nun. And this way, when people ask about my hair, I can have them direct their healing prayers to you.”

It’s a testament to how much I trust Barb and how far I’ve come in being able to accept help during my decade in Chronic Town that I said, “OK”—after asking “Are you sure? Are you sure?” about 500 times. Barb got us an appointment right away at her friend Kendra’s salon. I thought I’d be nervous, but Barb is one of the calmest, most nurturing people I know. We ended up just chatting on the drive over. I wasn’t hunched over clutching at my head like I’d imagined I would.

The process of having our heads shaved ended up being one of the funniest hours of my life. I went first, and Barb watched over me with love. I expected tears, but instead I felt relief. The instant Kendra cleared a patch of hair off my scalp, the throbbing stopped. I might have gotten choked up when I was through, as I examined my very white and very empty scalp. “What are all those horrible bumps on my head?” I started to wonder.

But then Barb sat down in the chair. Kendra refused to let Barb watch the shaving process. “Check this out,” Kendra laughed, as she shaved Barb’s hair into an exact replica of Ben Franklin’s hairdo. When Barb was completely bald, except for two slender strands of hair, Kendra tied them into pigtails, which shot out of the sides of her head. Barb kept a poker face through most of this silliness. But finally, when Kendra and I were laughing so hard we literally had tears streaming down our faces, she started laughing too. For a couple of minutes, the salon was filled with the sound of three women laughing until they could barely breathe.

I know how lucky I am to have a friend like Barb. She was right. It’s a lot easier being bald when you know you aren’t alone with it. For a while, we had some fun going out for coffee—deliberately not covering up our bare, shining scalps—and watching people’s fumbling reactions. At Starbucks once, two men sitting together took one look at us and began to talk about the need to go to the doctor for a checkup. We found this hilarious.

You see, Barb gave me more than just company in my baldness. She gave me the ultimate gift: laughter. I still smile whenever I think of the day we lost our hair. I remember the sound of our laughter booming out. I remember the closeness I felt with her, the funniness of the situation. I am so lucky to be able to say, the day I lost my hair, I could not stop laughing.

Thank you, Barb. Yeah, we are indeed too sexy for our hair.

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What about you? Have you ever had a friend help you through a difficult time?

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A Different Cast

February 24, 2014 at 4:04 pm (Uncategorized)

I’ve been thinking a lot about gratitude lately. After my recent months of flare ups, new chemo regimen, and hospitalizations, I didn’t like the lens I was using to view my life. I saw everything I couldn’t do, everything that was wrong. I felt excruciatingly the hours I was in pain, but overlooked the times I felt well. I was nearly insulted when someone would remind me of the good in my life. It didn’t take long for this perspective to land me in a bog of depression. What was the point of getting up and trying every day when it would all inevitably go to shit? Any good moment was so fleeting, and would be followed by a rough reaction to chemo, an outbreak of sarcoidosis in some new place in my body, or another month in the hospital. It was better to stay in bed, with the blinds drawn against the pernicious light, and listen to mediocre thrillers on my iPod.

I started to scare myself. Asking yourself “What’s the point?” too many times will lead you to the edge of an abyss. I have a 10 year old son, a husband who adores me. They didn’t deserve to be put on the ledge I was creeping onto. I am lucky to have the kinds of friends and family—not to mention a great therapist—who kept on nudging me enough that I found a way to climb back from that precipice. When I’d moan about what I could not do, they would, in essence, say, “That sucks. Now what can you do?” I think it was my friend Martha who suggested I start a gratitude journal. It’s actually rather amazing to see on paper all that you have when you start enumerating it daily.

My mother-in-law suggested a book that explored gratitude. Its point was to push yourself beyond a forced recounting of what you have to be grateful for, which can quickly come to feel like just another to-do list, and instead try to live in a “spirit of gratitude.” I think what this means is to aim to live almost inside gratitude, so that—hopefully— you feel fortunate with each moment and all that it brings. So, for instance, when I’m in the hospital, I now try to focus on the family and friends who care for my spirit, the doctor and nurses who care for my body, the health insurance I am lucky to have that covers (almost all) of my treatment, the iPod that brings me distraction from pain, the best medical equipment, the medicine that eases my pain and fights my disease, the soft pillow beneath my head, the heating that keeps my room warm, the Facebook app on my phone that lets me stay connected with friends across the world—and not on the inexorable suckitude of being in a hospital and how sorry for myself I feel. Maintaining this perspective is not easy. In fact, I think the point of striving for this angle on a tough situation isn’t on the achieving the Platonic ideal of gratitude, but in the striving itself, which pushes back against the self-pity, the hopelessness, the depression.

I was doing pretty well with this striving. I made it through two rounds of chemo, and the week-long barf attacks and exhaustion that follow them. It’s not that I didn’t have an un-gracious thought. But I was trying, and that trying brought light to the bottomless darkness I can sometimes feel.

Then, last week, at a visit to an orthopedist, I discovered that the chronic and insistent pain I’ve been having in my foot for the last year isn’t the somewhat innocuous plantar fasciitis (an inflammation of the tendons on the bottom of your foot) that the doctor first thought, but is instead either an irreparable tendon tear or a stress fracture in one of the foot bones. Since I cannot have an MRI because of my defibrillator, there’s really no diagnostic test the doctor can do to figure out exactly what’s the matter. Hoping it’s the lesser of two evils—the stress fracture—she ordered my leg casted and me on crutches for the next 4-6 weeks. If my foot heals during this time, we’ll know it was a break. Otherwise I’m stuck with the tendon tear. Because of the cast and my complicated health problems, she worried I’d get a blood clot, so I also had to start blood thinners. These drugs bring a worrying set of potential side effects with them. Oh, and I probably need knee surgery too.

I immediately began to feel extremely sorry for myself. Crutches are hard enough on their own without occasional vertigo from the neurosarcoidosis adding to the challenge. I can’t drive. It’s a complicated process to get myself a glass of water. My right ankle—the one I’m stomping around on—is starting to feel like it might give. I feel helpless and even more like an invalid. Would I ever get a freaking break (pun unintentional)? Wasn’t it enough already that I’m sick with a chronic disease, getting chemo, and nearly bald? This felt like adding insult to injury – well, injury to injury, I suppose, too.

I’ve spent the last two days fumbling around on my crutches, being extraordinarily grumpy and pretty much epitomizing un-graciousness. Jay and Andrew were heading off to go skiing. All I wanted to do was pull the blinds, climb into bed, and crank up my iPod. I was gimping towards the bed, when a quiet voice inside me said, “Stop. Just stop.” And I realized I didn’t want to inch my way back onto the ledge of extreme hopelessness. What I need is a new cast of mind (pun intentional).

So I am back to trying to cultivate the spirit of gratitude. I’m not sure how successful I am, but I am trying. Trying my best. That’s all I can do.

What are your thoughts on gratitude? Is it worth practicing living in a spirit of gratitude? If so, does it come naturally to you?

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Doctors—The Bad, The Ugly, and (At Last!) The Good

February 20, 2014 at 3:01 pm (Uncategorized)

This is the second installment in a series of essays called “The Other Side,” which explores the many reasons I have to be grateful.

I once saw a doctor who, while incorrectly diagnosing me with idiopathic pulmonary hypertension, tried to reassure me about my dire prognosis. “Well, you might not live as long as you like, but at least you’ll know what you’re going to die of. Lots of people don’t have that certainty.” I had a toddler waiting at home with the babysitter. I groped for the appropriate response. How much less time than I’d like to have with my son will I be allotted with this new disease? Is there any treatment? Or, Gee, thanks. I feel so much better now? I think I muttered something incoherent. Luckily, I sent my test results to a pulmonologist who called in a few days to tell me that I actually didn’t have idiopathic pulmonary hypertension. It was a relief, but I’m pretty sure the long, tearful days between the initial appointment the second opinion took a few months off my re-lengthened life expectancy.

I once saw a doctor who ordered me in a clipped German accent to stop being so stressed about my disease. “Go. Take a vacation,” she said. She delivered this command just a few hours after the electrophysiologist in her practice told me that he couldn’t promise me I “wouldn’t drop dead at any moment” after he off-handedly diagnosed me with cardiac sarcoidosis.

I saw a fleet of doctors who ordered dozens of unnecessary—and very unpleasant tests—because I was an “interesting case,” and I hadn’t yet learned the magic question to ask any clinician, eager to add my “data” to a paper on sarcoidosis: Will the results of this test change your treatment recommendations? Because I had good insurance and was eager to be a “good patient” and do anything and everything possible to improve my prognosis, I allowed myself to be subjected to what felt like a torture-chamber’s worth of tests. For one, an innocuously-named “tilt table test,” I was strapped down in a crucifixion-like pose and flung upside down by a mechanical arm while a Russian post-doc flitted in and out, recording my blood pressure at varying degrees of inversion.

I am done with these kinds of doctors—the casually cruel, the flippant, the generalists who try to be specialists rather than say, “I don’t know,” and the zealous over-testers who see me not as a person but as a collection of data points that must be unearthed, no matter what the cost to my body or my spirit. I’d like to report that it’s because I magically grew a spine, and learned to tell the bad and the ugly doctors to shove it. But not so much.

The real reason I am free of white-coated losers is because I am incredibly lucky. I found not one but two amazing physicians. One is the sarcoidosis guru I see in Ohio. The other is my local doctor and his team of excellent nurses who implement the treatment plan the guru conceives and deal with emergency care and disease flare-ups. Both of these doctors are kind. They are honest, and yet they are never blasé or disrespectful. They don’t bullshit me when the sarcoidosis is flaring and their treatments aren’t fixing me. But they also aren’t dire. While they aren’t afraid to say “I don’t know” when the disease is inexplicably flitting to a new organ despite their best efforts to stop it, they also don’t stop trying to make my life a little better. There is no more unnecessary talk of dropping dead or dying young.

They don’t sigh and make it clear that me and my messy disease are a problem, that if only I’d be more manageable they could swirl in with their white coats flapping and swirl out in the time they’d like to allot to me. They never shake their heads irritably when I pull out of the long list of questions I usually prepare before each visit. Instead, they actually ask, “Did we get to cover everything you’ve got there?”

Not only do these two doctors provide excellent and cutting-edge medical care, they treat me as a person, with hopes and fears—and a bad-ass disease running rampant through my body. They take my symptoms seriously. They try and treat the chronic pain and constant fatigue the sarcoidosis brings, even though pain and exhaustion don’t show up in scans. They are both willing to fight with my insurance company to ensure I get the treatments I need. But neither is a zealous “tester.” I am no longer subjected to scans and biopsies, heart cathertizations or other “minor” procedures—which really aren’t that minor— unless they need the results to decide whether to change my treatments. I’m not just a data point.

While they have different styles and different roles in my treatment, they have both steadfastly refused to let me relinquish my hope. “Every year there is a chance you’ll go into remission,” they’ve each told me more than once. I don’t think I could have survived a decade in Chronic Town without these two extraordinary physicians.

How about you? Do you have any medical heroes? Or villains? Are you getting the kind of care you deserve? Can you be grateful for the doctors you see?

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The Other Side

February 5, 2014 at 6:28 pm (Uncategorized)

My last post was about the challenges my health has presented over the past few months. That’s one side of my life. My next few entries will explore the other side.

It’s true that I’ve spent more days than I’d like in the hospital. But it’s also true that I was not often alone in the hospital. When I was an inpatient for 36 days this fall, my parents came out to help immediately and without question. Jay and my Mom alternated nights—one would sleep on the uncomfortable couch next to my hospital bed and get awakened with all the hospital business that just has to happen at four in the morning, including for some mysterious reason a nightly weigh-in—and the other at home with Andrew. This provided my son with stability and a schedule, two things nearly 10 year old boys need.

My sister Chrisie dropped her life in Kentucky and came out for several days. She too slept on the horrible couch, and alternated with Jay nights at home with Andrew. She was ferociously protective, as only a big sister can be. She ran interference with one lackadaisical nurse who seemed to try and take extra time to bring me medication when I desperately needed it. Chrisie brought me morning Starbucks espresso and selzer water. I would awake to her quiet, guarding presence waiting in the chair across the room—and the smell of real coffee.

During other hospitalizations, when Jay couldn’t be with me overnight, friends stepped in and helped, sleeping on that same slab of a couch. Molly, Martha, and Barb spent long nights with me—Molly when I was delusional with pain, Martha when I was uncontrollably vomiting, and Barb the night after a chemo treatment that I reacted very badly to with breathing difficulties and more delusions. Jan would spend hours watching me sleep, simply so that I was not alone. Other friends made meals for Jay and Andrew.

There is no lonelier place than a hospital. I am lucky enough to be under the care of one of the best doctors I’ve ever known and his team of truly skilled and compassionate nurses (even the laggardly nurse was kind and helpful). Still, it’s a hospital. You surrender your privacy. Your bowels are asked over, your urine is measured, your weight is recorded on a white board every morning at 4 AM for all the world to see later in the day. I was always hooked up to an IV connected to the port in my chest. Blood gets sucked out of that port every night around 2 AM. At least 12 times a day, someone asks you to rate your pain on a scale of one to ten. The bed is narrow. Machines whir and hiss through the night, which is long and not very dark because fluorescent light seeps in from the hallway.

I often was in pain, not able to see, with my head swirling with vertigo. At times I was afraid I would die. I could feel the disease surging within me, clashing with the chemo that was trying to control it, wrangling with the heavy fog of the pain medicine, aiming to run wild again in my brain. When I had a bad reaction to one of the medications I began hallucinating that I was in Toronto and the nurses were trying to kill me. It sounds funny now, but at the time I was terrified and really thought I was fighting for my life.

But here’s the thing. My family and friends were like a balm to the loneliness and the fear. They literally would not leave me alone. Jay got permission to work from the hospital for weeks at a time. We didn’t talk much, but I could hear him clicking on his computer, turning pages of the electronic documents he’d been sent. The sounds of living broke through the mechanical whirr and hiss of the machines. Often I was in too much pain, or I was too out of it to talk to the people who did battle with my loneliness for me. But it didn’t matter. I felt them next to me. Jay, my mother, my father, my sister, my son, Molly, Martha, Jan, and Barb watched over me while I slept. They brought me cool cloths for my aching head. They held my hand. They worried over me and for me. They brought me back from that place of hopelessness and loneliness and sickness and carried me home.

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I Am Not Dead

February 3, 2014 at 9:07 pm (Uncategorized)

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I am not dead. It’s just felt that way for many of the days since you last heard from me, way back in October. I apologize for doing such a lousy job of writing even the barest of updates. But life here in Chronic Town has been damn hard for the past few months.

I’ve been in and out—and then in and then out and then in and out again (it’s like the freaking hokey pokey at times) —of the hospital since my mega-stay in September and October, when I was in the medical clink for 36 out of 40 days, which was when I last updated this blog. My longest stay since then – another 2 full weeks in the hospital – ended last week. In between I’ve had a few shorter stays. Whatever their duration, the hospitalizations are hard on me, hard on Jay, hard on my parents, hard on my friends, and hardest of all on Andrew, my now 10 year old son. “It feels like you’ve only been out of the hospital for 2 weeks since school started,” he told me the other day.

The reason for this flurry of inpatient care is that my sarcoidosis has been severely flaring. When I can’t see from the disease acting up in my brain, can’t sleep from the pain, and/or can’t eat for days, my local doctor admits me to the hospital. It’s depressing how accustomed we’ve all become to this new routine.

A new chemotherapy protocol is another addition to our lives that we’d rather not have to contend with, but desperate times call for desperate measures—and I’m pretty freaking desperate. On the advice of the sarcoidosis guru, I began a 6-infusion course of “cancer doses” of my old friend/nemesis Cytoxan. (I got lower doses of Cytoxan every-other week for a year from 2009 to 2010). Now I get hit with a whopping amount of Cytoxan every three weeks.

I lost my hair—but luckily not my eyebrows. After being totally bald for a couple of months, my hair follicles gave Cytoxan the middle finger and I am now sporting a patchy crew cut—much to Andrew’s relief. He could deal with a Mom cycling between home and hospital, a Mom throwing up without warning, and a Mom laying in bed for literally weeks at a time, but apparently not a bald mother. “Please put a hat on,” he implored whenever anyone came over or we ventured out.

I know this post reads like a Christmas letter from Chronic Town. Instead of an annual update on the kiddies’ accomplishments, you’ve been treated to news about my hair line and my gastrointestinal workings. But after such a long absence from my blog, I needed to get the broad facts of the past months out there so that I can start writing more regularly again. I’ve missed it and I’ve missed hearing from you. My plan is start posting again, at least weekly, even if it’s just a line or two. When I was stuck in the hospital last week, I remembered my old goal of using this blog to try and make meaning out of chronic illness and build a community for those of us living with chronic illness (or who care about someone with chronic illness). So, how about it? Look for me here again every few days. And I’d love to know how you are all doing. Happy New Year.

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