Spreading the Word about Cancer Late Effects…and Hope

DefiningMoments_1200px.jpg

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.

 

 

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.

 

 

 

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

001854473

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.

 

When you start seeing someone new

IMG_0491.JPGMoaning, I threw yet another shirt on the bed and pulled on a purple cotton tank with lace at the hem. I added a purple beaded necklace, the silver bracelet my parents gave me that has the entire serenity prayer written on it in impossibly tiny letters that serves as a tangible reminder than I do not govern the universe, and a long, lightweight white shirt. I hurried to the mirror to examine the effect.

I nodded at my third and final outfit and headed to the bathroom to take my morning meds, disgusted with my own fussing.

I had changed my underwear to a nicer pair in a more subdued color. Doubtless I would have my pants off before too long.

I had remembered to shave and moisturize my one leg. Brushed and flossed, hair blown dry and sprayed, facial moisturizer slathered on. I sniffed under a raised arm — yeah, I already applied deodorant.

I debated changing my shoes but was running too short on time to get out the extra long shoe horn and start the wrestling match with my slightly nicer pair of black flats.

Nerves tightened my shoulders as I drove. We had made arrangements over the phone to meet at a place I had never been. My GPS system spoke to me in its Australian male voice, calmly guiding me closer and closer to this new person.

I wasn’t sure I was ready for a new partner, but the last one had already said goodbye. He was moving to Arizona and our relationship was over. He let me down easy, assuring me that he would miss me and that he still cared about me. He had to pursue his own career, and of course I understood that.

I parked the car and took a few deep, slow breaths. Grabbing my purse from the passenger seat, I shoved my keys into it and walked unsteadily toward the door and my potential new relationship.

To my relief, our initial get-to-know-you chat went quite well after the initial awkwardness wore off. I think we will suit each just fine.

As all amputees know, having to switch prosthetists is a nerve-wracking experience. I had followed my last one from one practice to another office much further away from my home in order to maintain our relationship.

I felt comfortable with Charlie. I felt like he knew me and understood my body intimately, as only a professional who fits a prosthetic socket into the groin of an above-knee amputee can. We had in-jokes about real problems (mechanics) and girl problems (aesthetic objections), and he addressed both with equal seriousness while appreciating my ironic feminist wit.

While I understood in my head that Charlie’s move was good for himself and his spouse, and I wished them the best, I nonetheless felt in my heart the loss of his kind, easygoing nature and vast prosthetic expertise, his quirky sense of humor and sharp eye. It’s difficult enough to endure endless fittings and adjustments, but it’s far worse if you can’t relax and trust the person groping your butt to find your ischial tuberosity.

It felt terribly vulnerable to show someone new my naked leglet (i.e. residual limb or stump), with its uneven folds and assortment of scars, ghosts of surgeries past. It was exhausting to go through the whole story again–the cancer, the chemo, the surgeries, the staph infections, more surgeries, the amputation.

We talked a little about what I do. I made it clear that I am not athletic or outdoorsy and remain completely uninspired by posters of mountain-climbing amputees. Perhaps they could find a poster of a female amputee in professional attire confidently speaking from a podium in a conference room? No?

As I left, I touched my fingers lightly to my bracelet, reflecting on what I can and cannot change. It will take patience and a willingness to be vulnerable for me to build a partnership with my new prosthetist. I’ll miss Charlie but I am ready to start over again.

Try, try again?

Teeth-whitening-867963

This morning I dragged myself into the dentist’s office so she could diagnose the source of the aching pain that has plagued one of my molars for the last few days.

Of course, being high as a kite on lorazepam–quite the niftiest pharmaceutical solution to anxiety imaginable–did facilitate our interaction. I’ve written before that we get no extra credit for suffering, and that needless suffering at the dentist (or elsewhere) should be avoided without shame.

So I was shame-free in my kind dentist’s chair, and as relaxed as possible, when I received a diagnosis and treatment plan. The good news is that the problem is treatable gum inflammation.

The bad news is that if I want to cure the inflammation and prevent it from returning, I need to two things. First, use a prescription mouth rinse and take ibuprofen for 10 days, which is simple enough. Second, I have to commit to using a water flosser after I brush my teeth every night.

Upon receiving this second mandate, which had been cheerfully suggested and just as cheerfully ignored on many previous visits as my gums gradually deteriorated, I felt my back stiffen and my lips press together tightly.

Resentment coursed through my body. Hot on its heels was something far worse–fear, anxiety, and certainty that I will fail. I don’t even want to try, I thought.

This is not due to laziness, of which I freely admit I have plenty. And it does not indicate lack of faith in my dentist’s expertise. Rather, the problem is learned helplessness. If I had a dollar for every time I have replied, “Yes, I’ve tried that already” to well meaning people who tell me about the product or treatment they saw in the news, I could buy a lifetime supply of stool softeners!

I’m well experienced at trying things. If at first you don’t succeed, try, try again, right?

I have tried many different skin care products for the skin breakdown on the remaining part of my right thigh, which gets irritated by my prosthetic leg socket. And I’ve tried a zillion approaches–medical, alternative medicine, and “woo woo” or spiritual–to controlling phantom limb pain and to coping with break-through pain. I’ve tried a dozen remedies for the constipation that results from my continual reliance on pain meds.

I’ve tried different styles of crutches to help the tendonitis in my arms, different systems for attaching my prosthetic socket, different types of shoes, insoles, and shots for the Morton’s neuroma in my biological foot. I’ve tried them all–one right after another.

And you know what the take-away lesson from all of this “trying” is? That most of things I try do not help at all, and the ones that do help somewhat come with side effects that range from unpleasant to intolerable.

It’s enough to make me not want to try, try again. Trying is so… well, to use a bad pun, trying.

Experimenting with this new remedy and that one, over and over again with high failure rates may be exciting or at least intriguing to scientists in laboratories and inventors in startups, but it’s a hell of a way to live. It’s expensive and tedious and demoralizing. It erodes my spirit.

Does this mean I’m giving up? No. I’ve persisted through far worse and I’ll persist through gum inflammation, too. Siting in the dentist parking lot, sipping Diet Coke and sobering up from the lorazepam, I ordered the damn water flosser from Amazon.

I promise, I’ll give it a good try.