Staring with a Twist

Most women I know organize their closets (if they organize them at all) according to such logical distinctions as work clothes, leisure clothes, and dress-up clothes, or along seasonal lines, separating the heavy sweaters and jackets from the lightweight cotton dresses and sleeveless blouses. Some enterprising women group color coordinates together for easy outfit assembly in the bleary-eyed, early morning rush.

I organize my closet by energy level.

Given the appearance of my leg, I determine each morning how much emotional energy I have in reserve for coping with other people’s reactions to my body and choose my clothes accordingly.

I live with an above knee amputation and a computerized prosthetic leg. I declined to get the foam covering for my prosthesis, so it looks mechanical rather than like a mannequin limb. Previous to this, I spent 20 years with an impaired, scarred, and misshapen leg as I endured numerous “limb salvaging” surgeries that left me with bone, muscle, and skin grafts. Either way, my leg looks weird, and people can say and do some really dumb stuff in response to seeing it.

Some days I cover my leg completely with pants that reveal only my limp and an oddly narrow ankle covered in a dark sock. Other days I choose shorts and leave my prosthesis—and formerly my scars, peculiar shape, and brace—vulnerable to the annoying, amusing, and sometimes painful stares, questions, and judgments of others.

I live in a pretty warm climate, so I typically wear clothes that leave my prosthesis visible. While I’m not ashamed of my prosthesis, I do get tired of the staring. I cover it up sometimes, just to have a break. Of course, I also cover it up when I’m cold or want to wear dress slacks for a more professional look. But mostly I wear capris, ignore the staring, and get on with my life.

And then there are the rare occasions when I am surprised not only by a stranger’s  kindness but by curiosity and creativity.

I just took a flight in which I shared a row with a kid who had no adult along, a little dark-haired boy who seemed about 6 or 7 years old. I nearly groaned when I sat down and saw him with the universal sign for “unaccompanied minor,” a clear plastic envelope on a lanyard, worn around the neck and containing flight and drop off/pick up information. As usual when I fly, I wore cropped pants, and I knew the kid would get a good look at my prosthesis. After shooting me a few quick glances, he asked what happened to my leg.

I gave him my standard answer for kids too young to understand the complexities of bone cancer and late effects. “My leg got really sick and the doctor couldn’t fix it. So he took it away and gave me this one instead,” I stated matter-of-factly.

“Oh! It looks like a robot leg,” he replied, his huge brown eyes wide with excitement.

I smiled. “Yeah, I guess it does.”

“You know what would be really great?” he demanded, his hands fluttering excitedly.

“What’s that?” I asked absently, already shifting my attention to my computer screen.

“It would be awesome if half of your whole body were like a robot! Then you’d have your robot half and your normal half, too!” He gestured, sweeping his hand to indicate the length of my body.

I cracked up. “You’re right,” I said, “That would be awesome!”

The little boy grinned back at me and then returned to his tablet, apparently well satisfied with his proposed enhancement to my body. And I smiled, too.

I’m the bad news

IMG_6156My sister-in-law sent me a touching video of patients and staff at Children’s Hospital at Dartmouth-Hitchcock lip-synching and dancing to Katy Perry’s song “Roar” (have some tissues ready). My first thought was of compassion for these young patients and their loved ones—how scared they must be, how confused, worried, angry, sad, tired.

My second thought was shame. Because I am the bad news. A life of late effects almost certainly awaits these precious children, if they survive treacherous cancers and their hideous treatments. I cried for these kids and their families, and then a bit for myself, too.

In almost three decades following my initial treatment, I’ve had 2 more life-threatening staph infections and 11 more surgeries, including an amputation. I live with chronic pain and medications that add insult to injury by leaving me tired, constipated, and frustrated with aphasia.

Of course there are also many wonderful things about my life. I am blessed with a fantastic partner, a lovely home in an amazing metropolitan area, great friends and family members who care about me. I have a rewarding career. I read voraciously and with great pleasure. Two adorable cats call me mom. The Red Sox beat the curse of the Bambino.

A lot of my scars are inside, where they don’t show. I try to keep up a brave face, and I mostly do. But when the memories of pain and fear and loss fuse together with the current reality of pain and exhaustion in the 2am darkness, I cry. When the itching of the skin inside my prosthetic socket makes me insane—but I don’t dare release the suction and remove the prosthesis long enough to scratch it because then my limb will swell and I won’t be able to get my prosthesis back on and I have to teach a class in 15 minutes—I muffle my scream with a throw pillow. When people stop walking to stare at my prosthesis with morbid curiosity and elbow their companions and jerk their heads at me to make sure that they get a good look, too, I maintain a tremulous smile.

I keep in mind that many people suffer a great deal more than I do, and that I have the privilege of health insurance, which millions of people in the U.S. lack (and many millions more will lose, if Congress succeeds in repealing the Affordable Care Act). I focus on gratitude and on not giving a damn what others think.

But then I picture those little bald kids in the video lying on stark white sheets, smelling the pervasive hospital scent of antiseptic and fear, their veins flooded with toxic chemicals, their gorgeous smiles and joyous dance moves. And the shame floods over me again—shame that I never got the happy ending, that my positive attitude didn’t make everything all better, that I manage a terribly imperfect body as best I can, that I’m not cute like the sick kids in the video.

I want so badly to believe that it won’t be too bad—that these kids are resilient, and the doctors are using state-of-the-art treatment protocols that have to be better than what they gave me almost 30 years ago (right?). I want to believe that the kids will be fine after their treatment, even though medical and social research confirm that fine is highly unlikely.

I can’t believe that, so instead I will tell the truth—that my heart goes out to them, that I have no idea what will happen to their children, that the cancer (and other illnesses) are not in any way their fault, that they have every right to cry and rage, that all they can do is their best, and that it may or may not be enough to save the kids.

A long road stretches ahead for these parents and kids and the hospital staff that cares for them. With no end in sight, they are better off focusing on one step at a time. I’m limping along, well ahead on the journey, hoping hard that some of these little kids catch up with me one day.

 

 

Exercise Sucks and Doesn’t Make me Thin but I’m Doing it Anyway

Everyone from fat activists (shout out to the awesome Marilyn Wann!) to Health at Every Size proponents to feminists to creativity guru Julia Cameron have told us that moderate, comfortable exercise is a form of self-love, a way of caring for ourselves as though we were precious and worthy of love, regardless of our body size. I believe this with my whole heart.

I still don’t want to exercise.

My mother tells me that as a baby and small child, I was content to sit and watch the world go by while my brothers ran around nonstop. Nineteen years of having reconstructive surgeries on my right leg (due to bone cancer) reinforced my tendency to sit still and to move slowly when I must move at all (my motto: if no grizzly bears, snakes, or zombies are chasing you, then there is no need to move quickly). Now as an amputee, I have to be careful of sores on my skin caused by sweating and rubbing in my socket (the part that holds the prosthesis onto what’s left of my leg), which gets worse when I exercise.

I know that exercise significantly elevates my mood, strengthens the muscles necessary to walk with a prosthesis, lowers my bad cholesterol, helps keep my weight (somewhat) stable (necessary for my prosthesis to fit correctly), and helps relieve stress.

I still don’t want to do it.

Yet for the first time EVER, I am maintaining a moderate exercise program on my own for a sustained period (almost two years). It hasn’t made me thin; I’m still a voluptuous woman. But I did find a way to exercise which is, well, not horrible.

Essentially, I bribe myself with Kindle books to spend 45-60 minutes on an exercise cycle that is made to go under a desk (called, naturally enough, a desk cycle) so that—in theory—one can pedal while working (um, no!). I paired this with a “drum throne” stool that has a back rest and a saddle-shaped seat that doesn’t bang against the back of my prosthesis. Because these are two separate objects, I could place them at the exact distance and angle that works for my back, left leg, and prosthesis, and I did it fairly inexpensively (about $250 total). I mention this process just to point out that you can think outside the box and experiment to suit your body type, limitations, and interests.

Anyway, I pedal away while reading mysteries, thrillers, romances, vampire stories, and the occasional piece of literary fiction 4-5 mornings a week. And I don’t hate it. I don’t love it, but I don’t hate it either, and more importantly, I actually DO it consistently.

So what’s different this time? Why is this plan working?

I have tried buying other equipment, memberships to gyms, joining classes, and making work-out pacts with friends, but none of it works for long. I want to believe that if I know why this approach is working now, I can keep making it work indefinitely.

But the truth is that our bodies don’t stay stable; they are always changing in big and small ways—that’s the nature of being a body. We don’t live in brains; we live in bodies—messy, imperfect, vulnerable, wonderful, and often out of our control.

Our bodily needs, desires, and capacities change with, and often without, our consent. Unfortunately, this is as true when things are working well as when they are not. It’s true right now as I experience the minor miracle of exercising in a sustained, healthy, and reasonably comfortable manner.

For now, I’m pedaling away while reading Cathy Lamb’s latest novel, my legs pumping, sweat dripping down my back, grateful for the current moment, for however long it lasts.

 

 

My Phantom Pain Bores Me

I had lunch with a group of friendly colleagues who I don’t see very often when we all attended a conference. One person asked me how my phantom pain was doing and then asked, “How can you feel your leg when it isn’t there anymore? Do doctors even know why your brain does that?” She added a slow, wondering head shake to express her astonishment at the peculiarity of my condition. “That’s just fascinating! I mean, wow!”

Not wow. Fascinating is not the word that comes to my mind. Off the top of my head, a more accurate term for phantom pain would be exhausting. Also frustrating, crazy-making, horrible. “Well,” I responded. “It would be fascinating, if only it didn’t hurt so much. I might find it more interesting without all the pain meds.”

As it is, I don’t find my pain very interesting at all. I try my darnedest to suppress this “fascinating” pain by taking a cocktail of pain drugs, all of which cause equally fascinating side effects, like dry mouth, constipation, and aphasia (can’t find the word I want, like tip-of-the-tongue sensation times 100). I “can’t tolerate” (translation: I vomit up almost immediately) go-to  meds Percocet and Vicodin, so “break through pain” (translation: pain that isn’t stopped by my daily regimen of pills) must be endured until it’s late enough that I can take my evening dose of pain meds with a sleeping pill, the combination of which usually renders me sufficiently zoned to achieve sleep and escape my fascinating pain.

I guess I can see how—in the abstract—phantom pain evokes speculation and curiosity. It is weird that my body “feels” painful sensations in my absent foot and sometimes in my missing knee or calf. And researchers still don’t really know what causes phantom pain or how to cure it. But I don’t want to hear about how fascinating it is, as though my suffering were a curiosity or spectacle.

No one who suffers from chronic pain ever tells me that my phantom pain fascinates them, probably because they understand that chronic pain (of any type) is utterly mundane. That’s the worst part. Pain becomes part of the taken-for-granted daily lifeworld in which some of us learn to exist, knowing there is no escape. Pain is just there, and it’s hopefully not too awful most of the time, and we work around it the best we can.

I am one of the more fortunate ones; the vast majority of my pain is addressed most of the time by medications that I can tolerate. It hurts but I can live my life. It’s so much worse for those for whom no effective pain treatment can be found or whose meds stop working over time, or those whom the medical establishment does not believe actually experience pain.

Phantom pain—like all chronic pain—is not fascinating and it is not heroic. It serves no helpful purpose, and it signifies neither moral decay nor righteous martyrdom. Phantom pain is boring.

And for those of you who want to know if I have tried that mirror therapy for phantom pain that you heard about, the answer is yes. Ditto for reiki, massage, acupuncture, electrical stim, and biofeedback. They weren’t fascinating either, but the massage was enjoyable while it lasted.

Forget Happily Ever After

Like the vast majority of long-term cancer survivors, my story has no “happily ever after.” I survived bone cancer in my right leg over 28 years ago, yet being declared “cancer free” was only the beginning of my journey.

When I hear about cancer in the news or on my Facebook feed, the stories are always heartwarming tales of courage and strength or else tear-jerker stories of devastation and defeat. There are no uninspiring cancer stories or cancer stories with messy, confusing, ambiguous endings.

The in-between, unfinished cancer stories—neither triumph nor tragedy—are whispered among long-term cancer survivors, their loved ones, and a handful of physicians and allies who run survivorship clinics and advocate for policy change. About 14 million people currently live past a diagnosis of cancer in the USA—many for 10, 20, even 40 years or more—and we are grateful, but frankly our stories tend to suck.

That’s because the vast majority of long-term cancer survivors live with late effects, illnesses and chronic conditions caused by chemotherapy, radiation, surgeries, medications, and other cancer treatments.

Late effects include heart disease, diabetes, kidney and liver failure, neuropathy, lymphedema, chronic pain, autoimmune disorders, and infertility. They include physical and cognitive impairments and disabilities. They include mental illnesses, such as depression, anxiety, and post-traumatic stress disorder.

Late effects impact our close relationships—emotionally, physically, and sexually. They make it difficult to buy groceries, drop our kids at soccer practice, or sometimes even to get out of bed. They impact our ability to work, often leaving us unable to support ourselves and our families, and without jobs, we lose our health insurance, and then we often lose hope, too.

Late effects are why there are few truly happily ever after endings to cancer stories. At best,  long-term cancer survivors can hope for realistically ever after. We do our best, accept help when we can get it, think creatively about possibilities, suffer with as much grace as we can muster, and spend copious amounts of time waiting. We wait to see physicians, counselors, and physical therapists and to have CT scans, MRIs, x-rays, blood tests, and outpatient procedures. We go to the pharmacy—a lot.

But you’d never know how my life or other long-term cancer survivors’ lives really are by watching cancer dramas on TV, hitting the health section of CNN.com, or reading almost any popular nonfiction book on cancer. I’ve been involved with a wonderful local American Cancer Society Relay for Life event in Santa Clara, CA for years, and the only time I have ever heard the term “late effects” at those events is when I speak it myself.

You have to really hunt to find the realistic view of life after cancer. Go to the excellent sites such as Livestrong, American Cancer Society, National Cancer Institute’s Office of Cancer Survivorship, or the National Coalition for Cancer Survivorship, but you will have to dig to find the bad news on long-term survivorship—it’s there, it just doesn’t get top (or second or third) billing.

I get it, I really do. Late effects aren’t heartwarming, and they mostly aren’t dramatic either (although people do die from late effects). Chronic illness is a downer. Hearing about late effects doesn’t make people want to “race for the cureTM” or “celebrate more birthdaysTM” or write a big check to build a new cancer center. Late effects aren’t inspiring or comforting to those currently undergoing cancer treatment.

Late effects are the collateral damage of the war on cancer, the flaming debris from the cancer moonshot’s blast off, and the unintended consequences of the latest scientific breakthrough in cancer treatment. We omit late effects from our cancer stories to our peril.

I am not a fairytale character who Suffered Bravely, became a Miracle of Modern Medicine due to her Healthcare Heroes (and her own pluck), and then got her Happily Ever After ending. I’m a real woman who suffered from cancer, gratefully survived, and now lives a life with late effects—which means good days and bad days, laughter and tears, love and mistakes, scrubbing sticky countertops and eating chocolate.

I’m living realistically ever after.