Associate Professor of Medicine, Division of Clinical Oncology, Director, Cancer Survivorship, Cancer Risk Counselor, University of Kansas Cancer Center; Founder, CEO, Cancer Survivorship Training, Inc. Just like many other nurse [ Read More ]
October 2014 VOL 5, NO 5
Practice Makes Not Perfect: Striving After Cancer
As a 7-year breast cancer survivor, my primary feeling most of the time is awe and gratitude that I’m still here. I can savor life’s small moments and big events, from sipping a piping hot tall dark roast to celebrating my dear friend’s 50th by dancing my you-know-what off!
There’s a phenomenon I’ve spoken about with other survivors, however, that also often accompanies survivorship and can at times be vexing. It’s similar to something I’ve dubbed the “What Did You Do to Get Cancer Syndrome” (WDYDGCS), which occurs when one is first diagnosed. My main topic is its sequel, “Perfect Survivor Syndrome,” or PSS, but in order to talk about that, I have to first familiarize you with WDYDGCS.
When I was first diagnosed, I received an outpouring of love and support from close friends, family, acquaintances, and strangers alike, but with some, there also came a dose of questioning about how I lived prior to my getting cancer. I was peppered with questions about my precancer lifestyle, some quite personal. “Did you eat much (fill in your ingestible villain of choice: meat, sugar, carbohydrates, dairy, processed foods, coffee) before your diagnosis?” “What about exercise?” they’d ask quizzically, proceeding to whether the water I drank was filtered properly, if I had a microwave, if I thought positively at least 90% of the time, or if I wore the color purple too much (well, maybe the purple part is a bit of an exaggeration, but it certainly felt like it got to that level of minute detail). It was when a woman approached me one day and quietly said, “You know, don’t you, that mammograms are what give you breast cancer?” that I (figuratively at least) threw my arms up in the air and decided I’d need to make the decisions that were best for me, from that point on.
I’m well aware of how loaded with controversy the previous paragraph is. I don’t intend to start a debate or foster dispute. These are solely my views, and I don’t pretend to speak for all breast cancer survivors. I just write this in the hope that it puts some readers’ minds at ease—that they forgive themselves more easily for the harsh judgments we make about everything we do and don’t do after diagnosis.
As for the answers to those questions, the fact is I’d been a vegetarian for 15 years of my adult life; paid attention to nutrition and ate a balanced diet; wasn’t officially a jock, but was certainly active every day; and as for my attitude, I’ve been described by some as not only energetic but even the dreaded “perky!”
I realized at some point that I’d probably committed this same faux pas, at least inwardly, with people before, so I’m not guiltless.
The conclusion I’ve come to is that most people (including me) are downright terrified when confronted with the C-word. And why not? It’s the stuff of scary statistics and stories, and the word is usually accompanied by sobering phrases like “valiantly fighting,” “enduring lots of treatment,” and the worst one, to me, “succumbed to cancer.”
I got to the point where this line of conversation annoyed the bejesus out of me, but then I realized it came from a place of fear—a how-do-I-make-absolutely-certain-I-don’t-get-cancer kind of fear. And I couldn’t blame them. I realized these inquiries also came out of love and concern for me. Everyone feels helpless when someone they love gets diagnosed; that is why casseroles were invented!
I bring up the “What Did You Do to Get Cancer Syndrome” because its sequel, after I finished my course of treatment, was “How Do I Become the Perfect Cancer Survivor?” This practice had less to do with people advising me than with my having a raging internal debate with myself about the best practices for living optimally post cancer. To tell the truth, I spent many hours devising in my mind a rather rigid “Perfect Survivor’s Plan,” or PSP, that was impossible to live up to. It went something like this:
- Eat some type of “ideal” diet.
- Don’t get stressed. Retain the aura of Buddha, despite the fact that your kid has a fever, your car needs new tires, and you have an imminent work deadline.
- Attract positivity by being 100% positive 100% of the time. Whatever you do, don’t focus on the school principal’s curt email response to your fantastic fundraising idea, the fact that your property taxes are way too high, and whether or not you should dye your hair.
- Engage in a grueling workout regimen, often. The more punishing, the better.
- Concentrate on each and every thing that could be a carcinogen: imbalanced pH in your body, nitrites in processed meats, free radicals, and the ever-popular Carcinogens That Aren’t Always Apparent (radon, pesticide residue on my celery, and second hand smoke). And then there’s the newly discovered danger in all things yellow—now I can worry about the rubber gloves I use to do the dishes, countless sippy cups my kids’ lips touched, and our current shower curtain!
Below are my admittedly slightly tongue-in-cheek, but ultimately much more realistic responses to the list above, created after many conversations with other survivors and following my own sleep-challenged nights:
- Life’s not worth living if I’m eating only black beans and kale. Nothing against black beans and kale—I just think food is a sensual pleasure and have decided that “everything in moderation” is a rule I can actually live with.
- I’m a cancer survivor—I get stressed! But I try to see the myriad strategies I can use to assuage my worry: meditation, walking the dog, a soothing bath, positive visualization, getting lost in a novel. The practical advantages of these prescriptions? They don’t cost a thing.
- I am a human being with an expansive range of human emotions, and the range includes times of being blue, anxious, and frustrated, as well as content, peaceful, and jovial. I’ve decided that it’s not a good idea for me to try to mold my feelings around a hard-to-attain, idealistic model. Feelings are not only completely unique—they ought not to be judged. That’s not to say I don’t think there’s a time and place for aids like antidepressants. I don’t think we should “bootstrap it” through the cancer journey and what follows, but our emotions represent an inherently well-designed and functional continuum.
- I will go to the Y and use the rowing machine and take Zumba classes because I also happen to enjoy those things. I will walk my dog. I may dance when I cook dinner. I will even wear a pedometer and try to reach 10,000 steps.
- In the words of the hit song from Frozen, I’ve “let it go.” It’s not that I live in a world where I’m oblivious to risk; rather, I try to keep my worries in perspective, so that I can indeed become more Buddha-like (see #2 of the first list!). Cancer helped me figure out why I get so aggravated with conspiracy theorists. I’ve always thought I have enough to worry about without wondering if UFOs are government funded! Now, I really can differentiate what’s worth my fretting and what is unproductive agonizing.
I feel that our culture is a bit obsessed with control, and if you throw cancer into the mix, it really gets interesting. Perhaps it’s our strong Judeo-Christian tradition in the United States, but the belief seems to persist that if we live a certain way, we get a guaranteed, favorable outcome.
One of the hardest parts about cancer for me is that it’s so randomly cruel. It’s not just jerks who get cancer, and sometimes that’s how I feel it should go. Rather, it’s often wonderful, loving, smart, funny, community-minded people. It’s one thing to know something intellectually and another thing to know it emotionally. For me, cancer made me cross over the bridge into the land of knowing things emotionally, and I’m grateful. This helped me in the process of finding a happy medium when it came to defining my personal best practices for cancer survivorship.
Despite what might seem a glib, dark humor on my part, my cancer journey intensified the level of gray I decided I could live with. By this I mean I became less sure of things, and more willing to consider the fact that there are even fewer absolute answers in life than I thought.
There is a loss of innocence that comes along with a cancer diagnosis, but there’s an undeniably enriching awakening too. Many of us are awakened to truly reassess our lives during and after treatment (from relationships, to jobs, to where we live), to reconnect with things we forgot we loved (painting, gardening, or chess), and to ask hard questions about what we’ve been doing with our time and how we really want to spend it henceforth. Our “no pain, no gain” culture can stifle this kind of prioritization. I’ve heard from more than a few survivors that their journey helped them prioritize, but quick!
Every person I’ve met who has coped with cancer has a very special perspective, and I relish hearing their list of how to live their best postdiagnosis life. Well-known developmental psychologist Bruno Bettelheim’s book A Good Enough Parent posited that parents shouldn’t strive for perfection, not only because it’s impossible but also because children would never develop resilience. I reckon that cancer patients and survivors uniformly believe they’ve developed enough resilience, but it’s undeniable that no one’s life escapes significant adversity. As we face it, we adjust our rules for living—both the simple (What should I eat?) and the more complex (With whom should I spend my time?).
Every new person I meet has lessons to teach me, and I, hopefully, can offer some as well. Each day illuminates varying levels of my success with Carolyn’s Rules of Survivorship, but cancer has also taught me to be more forgiving to my most outspoken critic: myself.
Armed with my list, each day I start anew, but now I remember to cut myself some everlovin’ slack. That’s the simplest, most deconstructed form of my “survivor-osophy” that I try my best to carry with me.
In preparation for the new American College of Surgeons Commission on Cancer (CoC) standards,1 OSF Saint Anthony Medical Center focused on having an oncology nurse navigation program in place to [ Read More ]