Happy Biopsy Day!

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Unlike most of North America, I am not celebrating Valentine’s Day today. Instead, I celebrate Biopsy Day. Today is the anniversary of the biopsy that confirmed my diagnosis of osteosarcoma.

Twenty-nine years ago today, my talented and compassionate surgeon broke the news that my right femur (thigh bone) would need further surgeries to remove the tumor and rebuild my leg with a bone graft and metal supports, as well as months of high-dose, in-patient chemo.

Like many cancer survivors, I turn contemplative on the anniversary of my biopsy. I feel tremendous gratitude for my continued survival. I am grateful for the amazing family, friends, neighbors, and colleagues who have supported me through my long journey of cancer care and then of late effects. I am deeply grateful for the privilege of comprehensive and affordable health insurance, without which I would not have been diagnosed as quickly, nor had access to high quality treatment.

At the same time, today is a day in which I grieve the loss of the person I was before cancer. I grieve the lonely nights in the hospital, the unspeakable pain, the endless complications and side effects, the TIA that left my entire left side numb and paralyzed for hours, almost 20 years of surgeries that culminated in the eventual loss of my leg, the advent of phantom limb pain, and learning to live on pain medications.

For a long time, I tried to reject the grief, sadness, and resentment that I feel about my cancer and late effects because I thought it was wrong not to be grateful for my survival. Osteosarcoma strikes many children and teens, killing them before they even have a chance to grow up. To feel pain and loss seemed horribly inappropriate for a long-term survivor when others die of cancer every day.

Yet over time, I came to understand my gratitude and grief as interwoven and inextricable from one another. My cancer diagnosis was a defining moment that forever altered my life course, in good ways as well as difficult ones. I would never have become a professor who studies communication in health care delivery if I had not had such intense treatment experiences. I would not be developing innovative methods for researching and sharing patients’ (and health care providers’) experiences if I had not been forced to conduct research in my unruly survivor body.

So today I embrace both my gratitude and my grief. I feel happiest when I am honest about the whole range of my emotions each year on my biopsy anniversary. Acknowledging my pain and losses frees me to release them in a way that denying them never could.

I wish you all a Happy Biopsy Day!

Nature and Me—Not a Love Story

IMG_0885.JPGThe animated film Madagascar features animals from the New York Central Zoo who unexpectedly travel to the wilds of Madagascar. When Melman, a hypochondriac giraffe, ends up with a tree branch and some leaves on his head and neck, he screams, “Nature—it’s all over me! Get it off!”

I empathize with Melman and have quoted his line many times (although I thought he said “the nature,” and that’s how I refer to it).

As an SF Bay area resident, I risk social isolation by admitting that I am a child of the great indoors and a dedicated city-dweller. My ideal of immersing myself in the nature is lounging on a restaurant patio with a Diet Coke and a cheese plate on a sunny day. I live in downtown San Jose. I do not hike, and I ride my adaptive bike outdoors only when the weather is dry, warm, and not excessively windy. I lived in California for 14 years before I finally made it to Yosemite, and once was sufficient.

My nature avoidance has a long history. Before I married Glenn, we made mutual vows that—among other prohibitions—there would be no camping in our marriage.

Despite my unwillingness to voluntarily hang out in the wilderness, I have no wish to hurt the nature that surrounds my beloved cities. I believe absolutely in the science behind climate change (and in taking steps to stop or at least slow down pollution that contributes to it), I want to protect our national and state parks, I dutifully recycle (although I draw the line at composting—eeeww!), and I bring reusable bags to the grocery store.

Yet I just do not find the nature particularly restorative as others do. The only exception is my fondness for ocean views and breezes, preferably accessed from hotel balconies or beach house porches.

When my friend jokingly asked me if I didn’t want to go camping with her daughter’s Girl Scout troop, I explained with mock regret that I had to be able to plug my leg in overnight to charge the air pump and the computer processor, so I really couldn’t sleep outdoors on the ground. This is true, but it is only part of the truth.

More truth is that I didn’t want to sleep on the ground or in a tent or whatever, long before my leg was amputated. Some people go “glamping” in lovely RVs and such, which offer electricity, invalidating my standard excuse and exposing the rest of the truth, which is that I just don’t want to be up close and personal with all that flora and fauna.

Years ago, black feminist writer (and nature lover) Alice Walker helped me through one of her beautiful essays to understand my alienation from nature as rooted in the patriarchy and its false dualisms between women and men, nature and culture. My former therapist provided another piece of the puzzle when she pointed to the link between my chronic perfectionism and my inability to control the wind, rain, or temperature.

Avoiding contact with bugs, mud, snakes, and rain (which I refer to as “unauthorized water from the sky”) also bears some similarities to my desire not to raise children. That is, it reflects both my fears and my desire to raise something other than kids and gardens. Kids and gardens (and camping) are great for some people, but they are not what my heart wants to raise.

I want to raise words into books and articles.

I want to raise my voice to help create a more equitable and peaceful world.

I want to raise students into critical analysts of culture and fierce advocates for social justice.

I want to raise relationships into loving communities.

May you raise up what your heart yearns for, while I do the same—only I’ll do my raising up primarily indoors.

 

 

 

 

Hallways, HIPAA, and the Herds

During one of many hospitalizations, I lay in my bed, running a fever and too distracted to concentrate on my school work or anything else. In the doorway to my room, one woman and several men milled about in their white coats. An older man nodded his distinguished gray-haired head to signal to a particular student.

Clearing his throat, the young man began. “The osteosarcoma in 12B was diagnosed via surgical biopsy in February 1989,” he said, and I realized he was speaking of me. “Right distal femur, stage 2b, limb-salvaging surgery May ‘89. Patient has undergone 12 rounds of chemo—uh, methotrexate, Adriamycin, and cisplatin. Readmitted with neutropenic fever. Current treatment is hydration, wide spectrum antibiotics, and acetaminophen.”

I was too weary to object to the reduction of myself to a diagnosis and occupancy of bed 12B, but it rankled. The attending continued to question the student reporting on my case, allowing anyone who was in a nearby room or wandering down the hallway to hear intimate details of my medical history. When the attending was satisfied, he led the way into my room, where he asked me a couple of perfunctory questions before continuing down the hall to his next patient.

Back in the old days, before the passage of HIPAA legislation in 1996 and the implementation of the “protected health information” privacy requirements in 2003, I used to lie in my hospital bed and listen to medical students summarize my case (and those of my roommate and other patients) to members of what my nurses referred to as the “herd”—the cluster of medical students, interns, and residents who roamed the hallways of teaching hospitals on the heels of attending physicians.

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This time-tested case study approach to teaching medicine has much to recommend it, having helped generations of medical students grasp the complexities of differential diagnosis and treatment. The gross violation of patients’ privacy was strictly incidental, of course, an unintended consequence of a proven teaching method. At the time, it upset me far more that I regularly learned things about myself from eavesdropping on my case report than it did that everyone in the vicinity also overheard the herd. Why wasn’t all of that information shared with me directly?

Its teaching effectiveness notwithstanding, the hallway case study method had a dehumanizing effect; it sent a clear signal that patient privacy would be sacrificed to the convenience (and power and privilege) of the herd. That is, the education of doctors became the most valued goal of the ward, rather than the care of patients. We were cases for them to learn from, stripped of names but with many of our most intimate bodily details shared openly—not primarily for our needs but for the student doctors’ benefit.

Many years later, I have more language and concepts available to me to explain why hallway reporting was inappropriate. Of course, this was also back in the day when patients were not allowed to touch the paper medical records that hung on the end of our beds, and it never occurred to me (preacher’s kid and good girl at the time) to peek. Now I wish I had been a wild, outlaw, peeking patient! I’m incensed that I was explicitly forbidden to touch the sacred record of my own illness experiences.

Ironically, I have shared far more intimate details of my life, body, illnesses, and relationships in this blog and in some of the journal articles and academic books I have published than were ever included in the hallway case reports. But that is my choice, not theirs.

I am not angry at the herds who did their best to care for me in the pre-HIPAA landscape. Society’s understanding of privacy has evolved over time, along with our expectations for the practice of medicine. I’m pleased that the case study process now continues with the HIPAA requirement that reporting happens in a conference room or other (mostly) private space prior to the herds rambling down the hospital hallways. I am thrilled that healthcare organizations cannot give out my medical information without my written consent and that, conversely, they must provide me with copies of my records at my request.

HIPAA isn’t perfect, but it did promise patients that the power to decide when and how to share our stories in public venues (including hospital hallways) would now rest with patients rather than with wandering herds. Yeehaw!

 

 

Good morning!

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I’m sitting at a coffee shop with two friends, recounting a rushed morning earlier this week when I needed to get ready and out the door unexpectedly and in a big hurry.

“I didn’t have time to take my leg off after working out,” I say. “So I did a quick sponge bath in the sink. It was a mess!” I shake my head, laughing.

My friends laugh, too, knowing that I am referring to my prosthetic leg, and then one says, “That’s not something you usually hear—that you didn’t have time to take your leg off, you know.”

I laughed and agreed that it certainly was not typical. Since then I have had the realities of my morning routine on my mind. Many people with disabilities and chronic illnesses have far more difficult or time-consuming morning routines than I do, that’s for sure. And I don’t want people to feel sorry for me. Yet I do think that most people have no idea what it takes for me, or any other above-knee amputee, to get ready for the day.

Wake up, grab my crutches, proceed carefully to the bathroom to use the toilet, and then back to the far corner of the bedroom. Sit in a chair, unplug both the computerized knee and the air pump on my prosthesis. Pull the blue silicon liner most of the way onto my leglet, smear Vaseline across my skin where I will sweat and the edge of the prosthetic socket will rub, pull the liner up the rest of the way. Add the wick, which is a slick cap for the liner, then slide on the thin sleeve of ridged silicon, lining it up so that the edge covers the wick and makes contact with the liner all the way around, while leaving sufficient loose material at the top to form a seal with the stiff, molded-plastic crown that I slide on next.

Holding all of this contraption together with one hand, stand up on tip toe and endeavor to line up the little knobs on the front and back of the crown with the corresponding holes on my prosthetic socket before pushing my leglet in until the knobs snap into the holes.

Assuming all that works out—it often takes a couple of tries—press the button on the pump embedded in my socket and wait while it sucks out air to create a consistent pressure to hold my socket in place. This usually takes at least two attempts before it reaches optimal pressure, which the pump communicates to me with varying series of beeps.

Next I pull on some workout gear, swallow a handful of pills, and make tea. Most mornings I ride a specially arranged exercise bike for about 45 minutes.

Then I go back to my bedroom, release the air pressure in my socket, remove my prosthesis and all four of the things I wear under it, and crutch carefully to the bathroom again. I maneuver into the shower and onto my shower chair, shower, dry off carefully because dripping water on the floor can make my crutches slide out from under me, and slowly make my way to the chair to repeat the donning of my prosthesis and its accessories.

Of course, that assumes that I don’t need to change my shoes, because that involves changing the shoe on my prosthetic foot before I put the prosthetic leg on. And if I am wearing narrow legged pants or leggings, I need to put those on the prosthesis after I remove the old shoe but before I wrestle the new shoe onto my stiff prosthetic foot. If I forget, I have to take the new shoe back off the prosthetic foot, which involves tugging and pushing with a shoe horn, before pulling on the pants and then attaching the shoe all over again, using a shoe horn and an amount of force worthy of Thor.

The remainder of my morning routine probably looks more or less like other privileged women’s, although I can’t be bothered with make-up.

I am not ashamed of these intimate processes, any more than I am ashamed of other normal bodily maintenance, like using the toilet, washing myself in the shower, or getting dressed. But they are private, and hence not generally something I talk about to others.

Describing the process of donning my equipment and becoming a cyborg again every morning feels strange but also really good. Being honest feels energizing. And like everyone else, I can use all the energy I can get in the morning.

Reflecting on Birth Control in the Happiest Place on Earth

Waiting for a bus to take us from our resort to the Magic Kingdom, I watched incredulously as a 4- or 5-year-old boy ran in circles, squealing and vibrating with excitement. The kid simply could not contain his joy at being in Disney World and beamed a smile while running around and around his own personal orbit until the bus arrived.

In contrast, I sat grumbling about the various aches and pains in my 49-year-old body and the cold temperature. And then I thought: I am so glad it is not my job to keep up with this kid.

As I mentioned last week, Glenn and I celebrated our 25th wedding anniversary at Disney World, the site of our honeymoon. In addition to being very cold, it was also quite crowded because we were there during the lead up to the Disney half-marathon, and the place was swarming with runners and their companions.

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Many of the companions were small children. In addition to the cute and joyful kids, Glenn and I exchanged many a fist bump, congratulating ourselves on our choice not to have children as young ones melted down and threw impressive temper tantrums around us.

Eating a mediocre, Mexican-ish meal in a café packed with kids, I reflected on the deep and abiding gratitude I feel for effective birth control. Birth control pills, IUDs, implants, vaginal rings, and other methods are all imperfect and have disadvantages, but they also have very high rates of success at preventing unwanted pregnancies.

Previous generations did not have the privilege of avoiding pregnancy; most heterosexual couples had sex, and hence eventually bore the natural consequence, i.e. babies. The freedom to choose not to have kids should be protected through improved access to affordable birth control for everyone.

Please note that I am not against other people being parents. If you are willing and able to be a loving and engaged parent, then I wish you all the happiness in the world. I also hold fast to the belief that non parents are not entitled to complain about misbehaving or crying children when they go to fast food restaurants, theme parks, tech museums, or any other place specifically designed for kids.

Like most people, I grew up assuming that I would have children someday. However, during cancer treatment, I experienced the tremendous physical and emotional vulnerability of repeated, painful, and exhausting invasions of my body by chemo, surgery, needles, and all sorts of unpleasant procedures, and I became significantly less excited about having a baby. Then I developed late effects, and the well-meaning but painful violations of my body continued, making childbearing feel less and less attractive.

Treatment renders some cancer survivors infertile, and this is a tremendous loss to them. I have compassion for their loss, even as my response evolved into a firm conviction that keeping my own body functioning is all I can manage, and hosting a fetus is simply not an option. Nor does chasing a toddler appeal to me.

My spouse is what researchers call an “early articulator,” meaning that he announced in the first month of our relationship, at age twenty, that he didn’t want kids, would never want kids, and wasn’t going to change his mind. Later when we decided to get married, he agreed that if I changed my mind when I got older and really needed to be a mother, I could have one child. While he promised to love our child, he also was decidedly unenthusiastic about parenting and wanted me to know that upfront. Fair enough. (By the way, he never did change his mind.)

Would I have wanted kids if I never had cancer? Or if the cancer treatment had restored me more or less to my previous body instead of dragging on into a cascading series of late effects, would I have wanted to experience motherhood? There is no way to know.

What I do know is that today I find my happiness, productivity, and purpose in ways other than parenting. And knowing that, I smile kindly at the watchful parents of the joyful little runner, assuring them that there is plenty of room for all of us in the Happiest Place on Earth, and everywhere else, too.

Romance Rethought

I write this in a cramped airplane seat, smooshed between an amicable teenage stranger and Glenn, the love of my life. We are on a return trip to our honeymoon destination to celebrate a milestone, our 25th wedding anniversary. I’m feeling thoughtful.

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Glenn and Laura at the San Jose Women’s March last year

My inner feminist contemplates the heterosexual privilege that enabled us to marry so many years ago when others were forbidden by law to marry their sweethearts. Love is love! At the same time, my mushy heart reflects on what has enabled us to sustain our relationship for so long, with the good times far outweighing the bad.

For me, romance is what keeps love alive, but not the Hallmark variety. Instead, I understand romance in a way that I think will resonate with long-term cancer survivors and people who live with other chronic illnesses (and presumably some non-sick people as well).

Here’s how I explain romance to my undergraduate students. I teach a course called “Gender, Health, and Sexuality,” a more grown-up version of high school sex ed that features research on interpersonal communication about sex and sexual health. One of the exercises I use to help students think about their (possibly unrealistic) expectations of romantic or sexual relationships is having them write responses to this prompt: “Three things Disney movies never taught me about romance…”

Students’ answers are inevitably wonderful, running the gamut from “condoms are messy” to “how not to get pregnant” to “what to do when the prince cheats on you” and “sometimes two princesses fall in love.” I never horrify students by talking about my own sexual choices, even those made 30 years ago, but I deliberately gross them out with a particular story about romance.

A couple of years after the amputation of my right leg, I woke in the middle of the night, sweat beading along my forehead, nausea roiling in my stomach. I panted, trying to catch my breath as I grew increasingly certain that dinner would not remain in my stomach much longer. I reached for my crutches but fell back onto the bed, dizzy and unable to stand up. “Glenn,” I moaned. “Glenn! I need your help.”

“What? Huh?” asked Glenn, groggily.

“I’m going to throw up and I can’t get up. I can’t get my crutches,” I groaned.

My stomach started to convulse, and I slapped a hand over my mouth. Glenn sprang into action, grabbing the waste basket from his side of the bed and thrusting it in front of my face just as I threw up.

Turns out that above-knee amputees, weak with stomach flu, cannot maneuver our radically off-balance bodies (when we aren’t wearing a prosthesis) to the toilet (and even if we could, we certainly cannot kneel or otherwise get close enough for precision targeting of vomit).

After I lay back weakly, Glenn emptied the plastic basket of its vile contents, then lined it with a fresh trash bag, actions he repeated every few hours throughout the night and following day as I waited miserably for the flu to run its course. “Thank you,” I whimpered again and again.

“Of course, my love,” he answered each time.

“Now THAT is romance,” I declare to my students. “That is a love worth celebrating.” I see a variety of responses among the 20-21 year olds. Some nod, getting it. Others look thoughtful. A few look queasy or bewildered.

I ask them what romance means, scrawling key words of their responses on the board—whirlwind emotions, desire and love (or at least like) converging into passion, being swept off your feet, soul mates, being wooed with sweet words and flowers and special nights out.

“And how do you feel when you know that special person is being really romantic, going all out to let you know how they feel?” I ask.

“You feel special,” says one woman softly.

“You feel like they really get you, like they care about you,” says another.

“Exactly.” I respond.

If all goes well, we will celebrate our anniversary tomorrow night by dressing up and enjoying a romantic dinner in an upscale restaurant. I doubt it can compete with the flu for making me feel loved, but I’m willing to give it a try.

Resolutions of Truth

As 2017 limps to a close and 2018 looms, many of us have New Year’s resolutions dancing in our heads. Some of them are things to do—this year I will eat more blueberries, kale, and salmon, exercise 5 days a week, keep my desk tidy—and others are things not to do—this year I will not eat so much refined sugar, I won’t press the snooze alarm, and I won’t engage in arguments over trivial matters at work.

Self-improvement resolutions aren’t a bad idea for some people, and they may inspire positive change. Of course, most of us forget our New Year’s resolutions within a few days.

I have been thinking about another type of resolution, however. Not a resolution to do or not do a particular thing, but instead resolutions as statements of (my) truth.

I was a member of the UVM debate team, back in the day (Class of ’91). The debates centered on resolutions, or controversial claims that a reasonable person could consider to have both advantages and disadvantages or strengths and weaknesses. Teams took turns supporting (affirmative) and rejecting (negative) the resolution. For example: “The US Supreme Court, on balance, has granted excessive power to law enforcement agencies.” This is arguably true in some cases and clearly not in others, creating the potential for good debates.

I loved debate—and I married one of my teammates—so it’s no surprise that I have, shall we say, strong resolutions about a lot of social and political issues, and that I am typically quite happy to debate. Admittedly, my ability to engage in productive debate has never been as sorely tested as it has during the 2016 presidential election and its fallout. “Alternative facts” and fun-house-mirror versions of reality offered up as truth by elected officials and Fox “News” exhaust and frighten me.

As I move into 2018, I want to embrace some core resolutions, things I know to be true. Inspired by writer Anne Lamott’s TED Talk, here are some things that I resolve to be true.

Bad things—like cancer, earthquakes, and traffic accidents—happen, often for no reason. Blaming ourselves or a scapegoat feels safer than living with the horrifying truth that we cannot protect ourselves from randomness or chance, but it is not.

Forgive whenever you can possibly bring yourself to do so—not because you owe it to the person or because it will get you into heaven or because your family wants you to, but because the refusal to forgive eats away at our hearts, marinating us in bitterness and pain. (Note: forgiveness does NOT include allowing someone to continue to mistreat you.)

Fur babies are awesome. Yes, they take some care, and some of your friends are allergic to them, and the vet bills can be a burden, but the joy they bring nearly every day cannot be overestimated. Westley and Buttercup make me laugh, offer comfort, help me to relax, remind me to play, and keep me company.

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Books are powerful—novels, creative nonfiction, biographies, memoir, short story collections, scholarly texts—and necessary. Books help us reflect on who we are, who we want to be, and what other possibilities exist. Books are places to rest, to escape, to imagine, to rebuild, to explore, to hope.

The world looks, sounds, smells, tastes, and feels different, based on our social positions. Everyone’s perspective is partial, and members of less powerful groups live with what W.E.B. DuBois called double-consciousness, or their own view of the world and that of the dominant group.

Egalitarian partner relationships based on mutual love, respect, and kindness are possible, and they are also tons of work to establish and maintain.

Language matters. We need to name experiences, claim identities, articulate viewpoints, and express our feelings and desires. Language continually evolves as we speak our truths.

The Beatles lied when they said, “all you need is love.” Love is great, but you also need a lot of other stuff, and love alone does not solve huge problems such as poverty, racism, and drought.

Chocolate is its own, wonderful food group.

Anytime we divide the world up into only two categories (women and men, gay and straight, the 99% and the 1%, North and South, black and white), we are lying, or at least distorting truth. Reality is always more complicated than that.

These are my resolutions, what I believe in my heart, soul, mind, and gut to be true. I want to hold them close in 2018, no matter what happens.

What are your resolutions of truth?