A Third Ending for Cancer Stories

What’s the alternative to triumph over cancer or tragic death to cancer?

A realistic life after cancer!

I am honored to have been interviewed by Dr. Nicole Defenbaugh on her podcast, Health Stories. We talked about long-term survivorship and late effects of cancer treatment. You can hear my story and also learn about some of the research on survivorship and the challenges in navigating the health care system many people face following cancer treatment.

Health Stories Episode 24: Realistically Ever After: The Third Story of Cancer Survivorship is available free on iTunes or on Nicole’s website.

While you are there, check out some of the other episodes, all featuring patients and health care providers sharing their fascinating stories.

 

 

 

Composting Pain

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Composting at Whitstable Farm, Los Altos Hills, CA

It’s October and in regions of the U.S. that actually have seasons, people are raking leaves and preparing their gardens for winter by combining dead plants and kitchen scraps into compost piles. Some add worms to this mix. Here in northern California, gardening–and composting–happens pretty much year round.

I’ve shared my general disinterest in nature before, which definitely extends to the process of transforming rotting vegetation into nutrient-rich compost for fertilizing gardens. However, I’m intrigued by composting as a metaphor for coping with stuff–including chronic pain and stress and, you know, life, which keeps happening in spite of our best laid plans.

Composting makes something useful out of dead stuff, leftover stuff, stuff that might at first seem to be just waste materials with no value. I am intrigued by the element of alchemy or magic that sparks the transformation of rot–not into something great, but into matter that will, in turn, facilitate the growth of something else. It takes time and heat and air for the rot to get far enough along that it becomes a powerful supplement and catalyst for growth.

Lately, I feel like my brain is composting some of my leftover matter, particularly pain. Mental compositing is every bit as messy as real-world compositing, albeit less gross. It takes place in the virtual world of the mind, where the mess is a tangled confusion of thoughts, emotions, habits, and memories–big and small–that break down into a rich, bio-psycho-social-emotional brain compost.

Much of my pain is phantom limb pain, which is to say, the result of different neurons firing my brain than the ones that fire when I bang my (still attached) ankle or cut a finger. The limb is gone, but the pain remains, a leftover capacity for a limb that no exists, which always seems to me to be a waste of my brain’s efforts.

Periods of time spent mired in pain or other unpleasant symptoms can feel like pure waste, as though nothing could possibly come from suffering that is worth salvaging. My mother is fond of saying, “This too shall pass,” during difficult times. And I always think, “good riddance!”

But perhaps wishing for pain to just go away is misguided; maybe composted pain and suffering provides fertile ground to grow useful insights, gut responses, preferences, creativity, and productivity. I try to imagine the virtual air, light, and heat of my brain breaking down pain, wondering what nutrients might emerge that would fuel my creativity, curiosity, or capacity for caring.

I want to clarify here that I am definitely not arguing in favor of the notion that pain and joy are mutually dependent, such that the more pain we feel, the deeper our capacity for joy, or in my metaphor, the more composted pain, the better thinkers, creators, or spouses we will be. I do not believe that pain automatically makes us more loving, moral, or brilliant people. Hazel Grace in The Fault in our Stars said it best:

Without Pain, How Could We Know Joy? (This is an old argument in the field of Thinking About Suffering, and its stupidity and lack of sophistication could be plumbed for centuries, but suffice it to say that the existence of broccoli does not in any way affect the taste of chocolate.)

While pain is not required to make us better or more joyful people (and for some people can even have the opposite effect), I think perhaps pain breaks down and composts with other elements of our experience to support new growth.

It is up to us to determine which seeds we plant and nurture in our individual brain compost. Now more than ever, I want to plant joy and kindness, piling on compost to help them survive in the current, disheartening environment.

So compost the broccoli and pass me some more chocolate.

 

Busy day becomes busy week becomes busy blog post

I’ve been trying to write this blog post for over a week.

First it was class prep — a new edition of a textbook that I haven’t used in years, so all my notes needed to be updated, and then two of the Youtube links I had used in that lesson plan no longer worked, so I had to search for new videos that would both amuse and teach my students. Met with a couple new students and replied to a zillion emails.

Then it was a fun evening at Dining for Women, a charity potluck dinner I attend monthly with my mother, which kept me out late drinking too much Diet Coke, too close to bedtime, which in turn gave me heartburn that kept me up too late, so that I was dragging with fatigue the next morning.

Then it was grading, and more students, and more class prep and more teaching, plus a meeting with an administrator about why our campus desperately needs a victim advocate for students and how such a position might function.

Picked up laundry and clutter and wrote a check for the housekeepers. Backed out the drive way, realized I had forgotten to clean the cat boxes, and prayed that Buttercup wouldn’t object to my forgetfulness by peeing on the floor [spoiler alert: she didn’t!].

Had coffee with a friend whose teenagers are being, you know, teenagers, then got my hair colored — because really, one must have one’s priorities straight, and my feminism allows for me to employ a Hair Goddess who magically disguises my gray hair.

Worked out, then more grading, more students, and a quick spin through Trader Joe’s so that we would have something for dinner, followed by more grading (why do I assign so many papers?) and even more emails.

Watched an hour or so of TV with Glenn before I fell asleep in the recliner, roused when Glenn woke me to go to bed, and then spent 10 minutes prying my dry contacts off my corneas, brushing my teeth, removing my prosthetic leg, and rubbing lotion into my itchy, sore leglet– after which, I had trouble falling asleep again.

Woke with a start when I realized I hadn’t finished the letters of recommendation that were due, finished them. Waited for the plumber, called the plumber, swore silently, rescheduled with the plumber. Took my parents out for an ice cream and to run errands, graded some more, then went to my BFF’s house where we used the DoorDash app to order dinner instead of making homemade pizza, because I was just done.

All of these things, and many others I have forgotten, are why I am just now finishing this blog post about a realistic view of living after cancer, post amputation, with chronic pain — and adorable cats and great friends and a wonderful husband — and a very busy schedule.

So yeah, I think that about covers it.

 

 

 

Squeezable sour cream and the capacity for wonder

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I have mixed feelings about sour cream. I mean, I absolutely love it, but it’s high in saturated fat so I should consume it in moderation (I have a family history of heart disease). Glenn doesn’t like it, so I tend to buy a small container, use 2 or 3 tablespoons of its creamy goodness, and then leave the rest to mold in the back of the fridge, buying more the next time I need some for a recipe.

I recently discovered that someone had the positively brilliant idea to put sour cream into a soft, squeezable container-bag-thing so that the contents are easy to dispense decoratively over a pile of nachos or a plate of appetizers, and it stays fresh for an incredibly long time in its sealed pouch of deliciousness.

I stood there beaming a bright smile in the dairy aisle of Zanatto’s Market, filled with wonder at my discovery. What an amazing world we live in — squeezable sour cream!!!!

Wonder has been in short supply. Lately I’ve been in despair over the current political climate, the news about Hurricane Florence’s damage is devastating, I’ve got way too much work on my plate, and I’m worried about various loved ones who are ill or struggling with tough issues.

Needless to say, the squeezable sour cream doesn’t help anyone dealing with the aftermath of a hurricane, and it certainly doesn’t address the problematic Supreme Court nomination/confirmation process. It can’t lessen my work load and it definitely won’t help my aunt recover from her recent back surgery.

But the few moments of wonder that suffused me in the face of this outstanding gastronomic innovation are precious to me. Wonder is excitement and surprise and joy and hope and admiration all at once. Wonder is a full-body experience — my mouth dropped open and then transformed into a wide grin, my eyes shone with pleasure, my lungs expanded as I took a quick breath, energy flowed down my arms and leg.

When wonder comes–for any reason, even something as silly as an improved way to package sour cream–we need to embrace it. We need to stop and pay attention. We need to recognize its power: Wonder is a resource for making it through everyday hassles, personal crises, and natural or political disasters. Wonder is food for our souls.

Wonder is kin to gratitude but it’s more than just appreciation. Wonder evokes a sense that the world is full of possibilities that haven’t been created or discovered yet. Squeezable sour cream reminded me that I don’t know everything, that I often can’t see what’s coming, that life’s uncertainty includes happy, fun, intriguing, useful, marvelous things, not just the bad stuff.

Not everyone I told about this experience with has shared my sense of wonder. In fact, most people have laughed, not unkindly, in the face of my exuberance over squeezable sour cream. But that’s okay.

I truly value this aspect of myself. I am thrilled that despite all the pain and the side effects of the pain meds and the hassle of my prosthesis and the stress and worry, I still feel wonder over simple things. And that wonder fills my soul so that I have sustenance to cope with whatever life throws my way.

And this particular wonder made some excellent nachos as well.

Matching dishes, mismatched legs

IMG_1926I grew up in a series of houses in which nothing matched. We had an odd assortment of dishes and glasses, towels whose colors spanned the rainbow and whose years of service varied widely, and furniture that was either given to us or was purchased a piece at a time as needed. It’s not that we didn’t have enough money; we were comfortably middle class. My thrifty New England parents just didn’t believe in replacing appliances that worked, plates and towels that remained whole, or functional couches with worn spots.

In response to this upbringing, I positively adore matching things. I’m a little obsessed.

In the 80s I had a pair of slouch socks to match every outfit. I’m incapable of wearing two different shades of black together. All of my dishware is (relatively inexpensive) cobalt blue Fiestaware–three sizes of plates, six different shapes of bowls, two types of mugs, and lots of serving dishes. I fully recognize both the financial privilege the enables me to worry about something as inconsequential as color and the essential silliness of this endeavor. But neither of those prevent me from eagerly perusing the online catalogues to see how I can add to my collection.

I once brought a pillow sham from a new set of bedding to the paint store so they could use a computer to precisely match the paint for our bedroom. When Glenn and I  selected furniture for our living room, an interior designer at the furniture store responded to my preliminary choice of fabric colors with a dismayed, “But we don’t want it to look too matchy-matchy!” When a favored fiction author releases a book in hardcover for the first time, I am dismayed that the new book will not match the others in my paperback collection.

I’ve got it bad.

For sure, the longing for things to match is one expression of my chronic perfectionism. Making sets of personal and household items match is one way of imposing order in my little universe.

So it isn’t easy to have mismatched legs. Of course, there are many worse struggles with being an amputee (like blisters in my groin), and at least one really good thing (I’m not dying of a staph infection in my dilapidated leg). But the mismatch still bothers me.

Given my lust for matched sets, you’d probably assume that I requested foam covering for my prosthetic leg so that it would come as close as possible to matching the shape and color of my biological leg. But I didn’t. While foam is straightforward for below-the-knee amputees, it is far more complicated with above-the-knee prostheses that use a computerized knee that must be charged daily. The finished effect approximates “normal” only when providing shape under long pants.

But even if prosthetic foam could be made to look more realistic for my prosthesis, it still wouldn’t match my bio-leg. It would be pretending to be flesh, masking its true biotechnological nature with an imperfect facsimile.

This inability to have my legs match in appearance and in function gets me where I’m vulnerable, in the part of me that longs to be perfect or at least normal. Perfectly normal.

Even after decades of late effects of cancer treatment, part of me wants to go back to who I was before the cancer, to that version of me where my limbs matched. She is irrevocably gone, of course. And perhaps more significantly, she never felt as though everything in her life matched either, even when she wasn’t sick and had all her limbs.

One of the most misleading things that well meaning folks say to people when their cancer treatment ends is some variation on “now you can go back to normal,” as though you could possibly re-inhabit the point of view of your pre-cancer self. Or “now you can  go live your life,” as though cancer treatment were some sort of “time-out” from living instead of a visceral, intense, frightening period in which you were more aware of living than ever before.

For good and for bad, I can’t ever go back to having a matched set of legs. Health communication scholar Dr. Lynn Harter writes eloquently about how survivors imagine “new normals” for ourselves to inhabit after a life-threatening illness, because there is no going backwards in our life stories, only forward.

My new normal as a long-term survivor allows for much joy, love, and productivity, while necessarily making room for blisters, medical appointments, and sadness. My new normal is always changing as I continue to imagine possibilities for my life with two dissimilar legs, each of which I am grateful to have. Most days I concentrate on imagining creative ways of living a new normal, rather than clinging to old ways that no longer fit me.

That said, the new possibilities for living will not extend to mismatched dishes.

 

Fear of Randomness

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I bought a card the other day that says, “Please let me be the first to punch the next person who tells you that everything happens for a reason.” You can buy one from the talented Emily McDowell here.

In the best case scenario, “Everything happens for a reason” is an attempt to cheer a sick or suffering person with the notion that meaning can be derived from difficult experiences, important life lessons can be learned the hard way, that more will be revealed in time.

In the worst case scenario, this platitude shames people by implying that their suffering is justified or righteous—that is, in the big scheme of the Universe’s (or God’s) Plan, they got what they had coming (even if we don’t know the reason).

What “everything happens for a reason” is really about is fear—fear of the unknown and the unpredictable, fear that bad things like cancer happen for no reason whatsoever.

This is a reasonable fear, because it happens constantly. Bad things happen to good people, and coping with this fundamental injustice is an age-old moral struggle that has been talked and written about in all cultures for millennia.

I had a student in my health communication course several years ago who grew increasingly frustrated with me as she questioned me about my cancer experiences. It was the second or third class meeting of the course, so we didn’t yet know each other very well.

I had told students that my interest in studying health communication had come about because of my own serious health challenges from bone cancer and late effects. I was diagnosed in the middle of my sophomore year of college, so my story cut a little too close to home for some students’ comfort.

This student—let’s call her Chelsea—asked, “Did you smoke when you were young?”

“No,” I replied.

“Does cancer run in your family?” she asked.

I shook my head. “No, it doesn’t. Why?”

“Were you raised with a healthy diet?” Chelsea demanded.

“Reasonably so, sure. Not perfect, but lots of vegetables, and one fast food meal every week or so, but otherwise home cooking.”

I could see in her face before she said anything—skepticism, frustration, even anger. I smiled gently at her and waited.

“You’re acting like you just woke up one morning when you were a sophomore in college and you just had cancer,” she spit out.

I nodded my head. “Yes,” I said. “That’s exactly what happened.”

Chelsea sat back with her arms crossed over her chest.

I returned her gaze calmly. “I know that’s frustrating to hear. We all want to know what causes someone to get cancer. I wanted to know why me and why at that time in my life and what exactly caused me to get it. But usually there is no known cause.”

For years, I blamed myself for getting cancer. At the time I thought I was just being logical—after all, no precipitating event or other catalyst for the tumor was ever identified—but I now believe that I simply found it less scary to live in a world where cancer was my own fault than to live in a world in which chaos, random chance, and uncertainty prevailed.

If everything really did happen for a reason, then there would be logic and order and predictability in the world, and things would make sense. It is so tempting to believe that lie. It takes a lot of practice to surrender our staunch beliefs in causality, that every effect has a direct cause, and in fairness, that people get what they deserve.

Evidently I didn’t get enough practice in surrendering false certainty during cancer treatment.  But in the almost three decades since then, my many leg reconstructions, amputation, frustrations with using a prosthetic leg, and phantom limb pain have finally brought me to the point of accepting that most of the time I can’t know the answer to “why me” or “why him?”

While sometimes bad things happen because of someone’s negligence, greed, or thoughtlessness, we need to acccept that we live in a world in which random chance unfairly causes devastating illness, accidents, and even death.

While I wouldn’t care to actually punch the next person who tells me that everything happens for a reason, I will argue with her. I will speak the awful truth—that often there is no reason at all for terrible suffering. And we do no one any kindness when we pretend otherwise.

 

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!