Spreading the Word about Cancer Late Effects…and Hope

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I am thrilled to share that I discuss late effects and life after cancer with Dr. Lynn Harter   (Ohio University) in the first Defining Moments podcast. You can listen to this free podcast on the Defining Moments site or you can download it at iTunes.

I am deeply grateful for the opportunity to share my own story and to describe some of the realities faced by cancer survivors, as documented in survivorship research, including my own.

My message is this: Life after cancer for those of us blessed to survive is not simply a triumph nor is it a tragedy. Instead life is messy and wonderful and awful and joyful and sad. In other words, life after cancer is as complicated as any other life.

Grateful for a cure, long-term cancer survivors often find that cancer has changed their life irrevocably, in both good and bad ways. Late effects–chronic illnesses and conditions caused by chemotherapy, radiation, surgery, and other cancer treatments–may prolong physical and psychological suffering. At the same time, survivors can grow and change and become who we are meant to be.

It’s been awhile since I blogged, as I have been caught up in my other life as a professional nerd who speaks at conferences and other universities about my work on embodiment and crystallization (and most recently data engagement) in qualitative research. Don’t feel badly if you have no idea what any of that means — it’s methodological stuff that absolutely thrills me, even as I leave many of my kind friends and family with glazed eyes and blank expressions.

Nerdy methods stuff is my one of my deepest passions. A methodologist is, in part, who I was meant to be in my life after cancer.

Outside the nerd-realm, I continue to struggle with mobility as an amputee and to cope with phantom limb pain. I don’t let my chronic pain stop me, but it does wear me out sometimes. I feel frustrated, but I also feel hopeful.

I’m grateful to Lynn and Defining Moments for inviting me to share my story and to increase awareness of the challenges and rewards of long-term cancer survivorship.

 

 

Denial II: The Down Side

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So yesterday I was going along through my over-scheduled life, when I carried a bag of prescription cat food across the vet’s parking lot. Focused on opening my car trunk, I failed to notice the curb and a second later I was falling, my knee banged into said curb, and I landed unceremoniously on the ground, panting through the incredible pain.

Glenn was by my side in a moment, worried and eager to help. After we maneuvered me into the car, I quickly embraced denial as a strategy. Glenn quite reasonably wanted to take me home for ice and elevation of my leg, while I preferred to pretend it was nothing and continue on with our plans to meet my parents for dinner. I figured that my pants weren’t ripped, so it couldn’t be that bad, once the initial blast of pain had dulled.

I have written previously about the upside of denial, and I stand by my conclusion that facing some medical diagnoses or procedures with some degree of denial rather than full, conscious awareness of all their horrific elements, can be a functional approach to facilitating adjustment and coping.

But this is not that type of story. This one illustrates the down side of denial.

I got my way, we had a lovely dinner, and by the time we got home, my knee was so swollen and painful that Glenn had to support me every step of the way to our bedroom. And today I had to cancel all meetings and classes for the entire day to keep my banged up knee iced and elevated while I gulped anti-inflammatories.

I admitted sheepishly this morning that denial is my preferred strategy in the face of all medical drama, and Glenn said dryly, “Yeah, I know. I’ve learned a few things about you over the years. I tried to get you to go home, but you were being you, so…” He shrugged.

Denial is almost always my first-line coping strategy. I can’t say for sure whether skipping dinner in favor of immediate icing would have left my knee in better shape today than it is, but it is quite likely that it would have helped.

This time denial was not a functional phase of coping; instead, it was a step toward making my knee worse.

Yet I admit that in the same circumstances, I would almost certainly make the same choice again. With all of my extensive formal education, it is reasonable to ask how I can be so very dumb. Why do I embrace denial in circumstances where it makes the situation worse?

Clinical psychologist Mary Lamia offers a helpful insight. She suggests that it may not be reality that people in denial are rejecting—in this case, the fact that my knee was clearly badly bruised and swelling—so much as we are ignoring the truth of the feelings that we have about a particular reality.

Yeah, that sounds about right.

What did I feel when I smashed my knee? Dismay at the pain, anger at having my busy routine disrupted, embarrassment at falling, fear that a serious injury to my one remaining knee would make my already complicated life as an amputee untenable.

I was, and remain, utterly uninterested in experiencing those feelings. Hence the denial. Do I know better? Sure. But when those emotions wash over me, I just want them to go away as quickly as possible.

As I sit on my couch with my knee elevated and iced, I can admit that denying “all the feels,” as my students say, is ultimately a bad idea. As long as I deny them, I can’t process and release them.

And unlike the swelling in my knee, no amount of ibuprofen—or any other substance—will ease the swelling of painful emotions that are denied. Ouch.

 

 

 

 

 

 

 

 

 

 

 

What sparks a light in you?

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I just finished a busy, productive quarter teaching two classes of great students.

And as usual, faced with the dreaded end-of-quarter grading deluge, I decided to forgo mindfulness, gentle self-care, and a reasonable schedule in favor of going full-out Old Testament style in my stress—gnashing of teeth, rending of garments (well, okay, I put my thumb through the side seam of one aging pair of underpants), and offering of burnt sacrifices on the altar of academe (okay, it was one Trader Joe’s frozen scallion pancake burnt beyond recognition in the toaster oven).

Anyway, my grading frenzy sucked, and I had come down with a cold by the end of it. But I made it through, as I have at the end of each term I have taught since I began teaching as an M.A. student 23 years ago.

When at last I cleared away the accumulated Diet Coke cans and looked up from my grading screen (I have long since traded old school piles of papers for the speed grader rubrics in my course management software), I was exhausted. It was then that I happened to rediscover an Internet meme that I had found a while ago and forgotten:

You often feel tired, not because you have done too much, but because you’ve done too little of what sparks a light in you.

Well, yeah. Grading most definitely does not spark a light in me. It is a necessary evil rather than a satisfying part of my career as a professor.

This naturally led me to thinking about what does spark a light in me.

Cuddling my cats. Spending time with Glenn. Visiting family. Having coffee or lunch with  friends. Cooking with my mom. Making pizza and playing “death match” (Rummikub) with my BFF, niece, and nephew on Friday nights. Reading novels. Being by the ocean in Maine. Good quality chocolate. Cheering for my Red Sox. Purple t-shirts with feisty feminist sayings printed on them.

And a lot of my professional work sparks a light as well—designing course syllabi and lesson plans for a new or revised course. Reading journal articles and scholarly books, particularly those on innovative qualitative methodology (nerd alert!). Writing. Attending conferences. That feeling you have after a class session has gone really well, with students highly engaged and seeming to really grasp challenging concepts.

This list certainly isn’t exhaustive, and its odd array of items reflects my particular quirkiness. Your lists would include different things, maybe hiking or football or gardening or computer games or dog walking.

I love knowing that each of my loved ones—and all acquaintances, neighbors, and strangers—have their own unique lists of what sparks a light in each of them. It takes all kinds to make a world, and it takes the tremendous variety of what sparks each of us to make and sustain a good world.

What sparks a light in you? How can we spend more time doing sparky stuff and less time doing things that don’t spark our lights or even extinguish our sparks?

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.