Dan Shapiro, PhD

I remembered this phase from my own cancer experience and those of my patients. The terrible fear that lived in my bones that, at any moment, the bolt of recurrence would flash into our lives again, bringing with it the weakness, difficulty concentrating, baldness and scars that served as ever-present reminders that I wasn’t the same person I’d been—and would maybe never be. I was also faster to anger; my post-cancer rage was a frothy river just beneath the winter ice.

I remember being afraid of the world called “normal.” Like trying to cross a river by stepping on a lily pad. If I invested and believed too hard in normal, I might trust too much and drop beneath the surface. It was psychologically easier when there was something to do to fight the cancer. How could I go back to worrying about school and grades and car tune-ups when a hunting enemy might be near? I remember the bravery it took to sit and study for a silly exam. 

This mess is what Terry is feeling, I realize.

But we need her to be the mom and wife we’ve had. We’ve been struggling through chemotherapy and radiation and all the fear—for what feels like eons&mdash;and now we just need her back. And to shove it behind us. 

“We love you, is all. It’s just going to take us time. You don’t have to be anything you’re not,” I tell her, because it’s the only thing I can think of. It rings hollow, like coins landing in an empty soda machine. And I’m still standing, and I sound more like a professor than a husband, so I drop and sit on my knees at her level. Now I’m more like a husband, and see, down here, that we’re in this together. Suddenly I remember looking at breasts on the Internet last night, and we haven’t had sex in forever, and why am I thinking about this now?  

But I launch into a reasoned and loving explanation that who she is hasn’t changed at her core, and I remember feeling vulnerable after cancer. Things got better with time, and then I wrap up with a few nicely chosen words about the children and our lives together and even Bisbee the dog. It’s a diatribe, but it’s not horrible. Is it?

One corner of her mouth is turned up. She’s studying me carefully and seems disappointed. She could have delivered this speech herself; it’s too canned. But I don’t know what else to say, so I just stand up, getting tougher now.

“Come on. You don’t have to be normal, but you do have to get up and put on a shirt. Nim’s Island is waiting, and apparently everyone in this house knows I can’t carve a potato into a magical creature.” This does strike a chord, if only a minor one, and now she wipes her face, rises to standing and yells, “I’m coming,” to Alex across the house. 

I know that this is the loneliest phase of the cancer experience for everyone. I need her to be normal, and she needs time to find the courage to put her toes into the waters of our future before plunging in. There is no normal here to be found yet, and the words that can bridge our separate worlds are evasive. Time, of course, will help eventually. But more, it will be the micro-life behaviors that will remind us of who we are that will serve as our gradual compass. One small act at a time will forge our new normal. Laughing with a friend. Putting on a comfortable sweatshirt. Making a favorite meal. Helping a child with a project.

Standing in the closet as she padded away up to the dining room where the potato artist awaited, I don’t know what I should have said. I waited a few moments and then came out to the dining room, where Alex and Terry huddled over the shoebox. Terry was carving the potato, and Alex was gluing with one hand and sprinkling something with the other. 

And there, on the top of the box, a glittery sky slowly emerged. 

Dan Shapiro, PhD, professor and chair of the humanities department at Penn State College of Medicine, is a survivor of Hodgkin lymphoma.

This week Alexandra, our 8-year-old, has been asked to create a diorama of 

, one of her favorite books. On the dining room table, my child has already assembled the shoe box, construction paper, pipe cleaners, glue, markers, glitter, tape, wrapping paper and…a potato.

She squints at me. Duh. Now she only needs her mother. I am, apparently, unqualified although no one in the household has bothered to share the reasoning behind this decision. Was there a committee vote? Doesn’t anyone remember my creativity in installing the new kitchen disposal?

It’s been a few weeks since Terry finished treatment for breast cancer. First there were the surgeries, and then the dosedense chemotherapy, and most recently, the radiation. Despite my having been through cancer myself, I am eager, lately, to not think about it.  

I remember being afraid of the world called “normal.” Like trying to cross a river by stepping on a lily pad. If I invested and believed too hard in normal, I might trust too much and drop beneath the surface.

Earlier, when I got home, Terry was wrapped in a blanket in front of the television watching re-runs. She just returned to work full-time, and I think re-entry has been a little challenging, but we haven’t talked about it. I saw her a little later emptying the dishwasher, and then she was folding laundry, and now she’s … I don’t know.

I check outside and the garage. She isn’t in our bedroom or the girls’. She isn’t with our second daughter, Abby, napping in the playroom. Nor is she with the dog, perched, as usual, on the hot-tub cover. The minivan is still in the garage. I’m making a circle back through our bedroom when I hear something in our walk-in closet. I open the door, and the crack of light finds a blue thigh.

She’s on her knees on the carpet, surrounded by hanging slacks and shoes. She wears only her blue sweatpants; her hands are over her face, and her elbows cover her naked torso.

“Please don’t turn on the light,” she asks. Her voice is taut and gasping.

“Not now, honey. I’ll be out in a sec,” Terry says. She says it with a voice I have yet to master. It carries absolute maternal certainty, and Alex withdraws silently.

There’s a pause, and then Terry doubles over onto her knees and emits a wailing sob—it’s a pure silver tone, anguished and grating, and it slices away all the humor in the universe.

“Alex was looking for you. I think she wants help with her …”

“Funniest thing, she has this potato.”

She lets her hands drop to her sides and slowly comes up; her torso is in the light, and my eyes have adjusted.

I can feel heat radiating out of the top of my head. I’ve been trying so hard not to think about cancer, and rushing headlong into that celebratory “We’re done,” that I hadn’t noticed Terry wasn’t running alongside. But she has to! We have to be done!

She’s looking at me. “What do you mean you can’t do this? The project?” I ask.

“No. All the pretending that we’re normal. We’re not normal. I’m not normal!” she insists. “Look at me!” she orders, “This is who I am now.” She sits up, revealing her chest. Her remodeled torso is naked and still foreign to both of us. Her hair, once long and wavy, is cropped military short, and even her eyebrows and eyelashes are only a faint outline of their former selves. And her optimism— once fierce and unwavering&mdash;flickers.

Articles

When healing comes from quiet corners, soft words and family moments.

Coming Back Out of the Closet

A couple I work with recently came to my office eager to share the details of one of their fights. He was hoping I’d tell her that he was right, and vice versa. Here’s the fight:

Her plane lands. She comes down the long alley and out near security where her husband waits. She’s just flown cross-country, it’s been only a few weeks since her chemotherapy ended, and she’s exhausted. There’s one other important detail. She’s wearing a gorgeous lavender-colored garment. There’s a tired embrace and as they walk toward the escalator he says, “New dress?” 

This story was relayed to me in my office. I’m a psychologist and a cancer survivor of 20 years. My wife was diagnosed with breast cancer three years ago, so I’ve had the dubious distinction of having been a patient, a spouse and a psychologist who treats folks with cancer. When the couple was done describing their escape from the airport, they both looked at me expectantly, eager for my sage wisdom, which is rare even on good days. When I confessed to having no idea of the problem, they looked confused. 

“Well, of course, we didn’t speak to one another for the next four days,” he added. She nodded in agreement. I smiled weakly. 

After some questioning the problem was clarified. For this couple, this was fight No. 4. Many couples have a set of fights with both sides tightly scripted. For them, this was a fight about money. Roughly once a month they have a fight, usually about how he talks to their daughter (fight No. 1), infrequency of sex (fight No. 2), the role of her mother-in-law in their lives (fight No. 3), and this one, the money fight (ta-da). 

The money fight is about her secret shopping trips. She has an affinity for “retail therapy” and will often argue, after returning from a sale, that she saved the couple thousands of dollars by making a number of prudent purchases, usually on expensive dresses. He, in contrast, only sees the money being spent and it concerns him. (For now, I will avoid analyzing the logic of their mutual perspectives because my wife also likes to shop, she’s going to read this, and I am a coward.) 

The important thing to notice is that the couple has been having this exact fight for years. They’ve got it down so efficiently that now they can have it in under 12 seconds and using only three words! 

Here’s another example: Until recently, my grandmother, age 98, and her older sister, age 103, would often get together. Here’s one of their conversations: Aunt Etta says, with a hint of competitiveness, “It’s so nice to have all of my grand-children and great grandchildren living so close to me.” 

My grandmother’s grandchildren are splashed across the country. She barks back, “At least I can walk!” 

Their mother reportedly once said, “My girls argue only once a day; it just lasts from morning until night.” These two sisters quarreled their entire lives, loving one another deeply but also having the same competitive fights over and over. It might sound obvious, but it’s been my observation that if you don’t actively change how you communicate, you won’t change how you communicate!

For couples coping with cancer, major fights seem to escalate after treatment ends. There’s something about pushing together against the cancer that unites some couples, or at least infuses some modicum of perspective. “How can I yell at her for buying herself a dress when I know she’s worried about how she looks without hair?” he might have thought during treatment. But now that treatment is over and they’re trying to get back to “normal,” he unleashes his fears and they fight. 

So what are the solutions? Clearly, the answer is to purchase expensive dresses. Hah! Some of you would like it if I left it there, wouldn’t you? You could run out and purchase an expensive dress and then blame me and 

Let’s step back and say what communication does and doesn’t do. Good communication is not always the key to good relationships. Some couples do just fine communicating terribly or not at all. You’ve probably known people who lived happily snapping at each other regularly like underfed Chihuahuas on speed. For most of us though, communicating well helps us feel loved and appreciated. So it’s worth taking the time to do something different.

First, start from a place of recognizing that the cancer experience has just happened to both of you. I’ve now done the patient job and the spouse job. I can safely say that both jobs are unpleasant things to do with one’s summer (or fall or spring and especially winter). 

Second, listen carefully and start your response to any attack by acknowledging the true parts of what your spouse has just said. Even if the true part is tiny. This is probably the most important technique I can share. Your instinct is going to be to follow the argument script, to say exactly what he or she expects. Don’t be surprised if your spouse faints when you change your approach. I taught this technique to one couple and after she said, “You’re right” in the middle of a fight, her husband continued his side of the fight without her for a good 10 minutes before he said, “Wait a minute, what did you say?” 

Third, we can try to do the little things that make our spouses feel loved. For example, if I clean the bathroom my wife gets excited; it’s foreplay in our house. Seriously, she knows I love her if I clean. And I like to sleep with something over my eyes. I know she loves me when she puts a T-shirt under my pillow so I can wrap it over my eyes. It seems small, I suppose, but these little things make up a relationship. These are ways we communicate with one another that we are in love in addition to what we say. And these little actions take the air out of our fights. It’s harder to be angry at her when she’s put the T-shirt under my pillow.

Finally, I am not one of those folks who is glad to have had cancer. I’d trade all the opportunities and wisdom that came packaged with the experience for a chemotherapy-free lifetime. Still, I suspect one of the lessons wrapped in cancer is about the importance of relationships — that our closeness to other human beings is the nectar of our lives. Maybe we can all learn to give up our favorite dress, or let our spouse buy one without hearing our complaints, and enjoy our metaphorical ride out of the airport, together, just a 

“How can I yell at her for buying herself a dress when I know she’s worried about how she looks without hair?” he might have thought during treatment. But now that treatment is over, he unleashes his fears and they fight. 

Couples' major fights seem to escalate after cancer treatment ends.

A Dress for Duress

The rodeo comes to Tuscon, where I live, once a year. Bandannas adorn the young and old. There’s more flannel and belt buckles at the grocery and video store than you see the entire year. The pickup-truck-to-minivan ratio goes way up, and you are far more likely to hear people yell "Yeeeee Haaaaa" at inappropriate times.

My wife, Terry, and I are both survivors. It’s occurred to me that getting life back to the new normal after cancer treatment is similar to a rodeo; there are specific skills we need to thrive and many of them are as challenging as riding a bucking bronco. 

If we inaugurated a “Return to ‘Normal’ Rodeo” you would probably recognize many of the events—you may even be a contender.

Let’s stage the Return to Normal  Rodeo at a showground with announcers and bleachers and popcorn. For good reason, only the toughest among us would enter.

The first event in the Rodeo is the Wig Gauntlet. A timed event in which style points are assigned for keeping one’s wig centered and FANTASTIC, this complex skill test simulates a formal office cocktail party and has three stations. Dressed in a tux and tails or ballgown, you must cope with gusting wind (simulated with a smallish jet engine); an overly aggressive hug from Skip, the hair mussing 6-foot-10-inch ex-football player from the sales department; and six ex-beauty queen wives interrogating you about your hair products and your fashion stylist with such questions as, “Your hair is sooooo cute, what salon do you go to?”—all while crammed in a small women’s bathroom. The winner in this event would be the first to run the gauntlet with nary a wig hair out of place.

The next event, the Chemo Brain Bonanza, stands as a vicious test for even the most seasoned cancer cowboy. Here you must recall your five closest friends from high school and the streets they lived on. Then you have to make a shopping list of 10 items that you will retrieve one hour later—without the list. I know, it’s brutal.

The third event in our Return to Normal Rodeo will be Bathroom Riding. It pits contestants against a house full of adolescent daughters for control of the family bathroom on a Friday night so your wife can get ready for your first post-treatment date—with her new wig. Here’s the tricky part: The adolescent girls are also preparing for a night out and they cannot see your wife bald. I can hear the announcer now … “That was a fine ride, Sparky. I have an unofficial time of 1 minute 24 seconds before they dragged him out. He was clinging to that sink pretty good, wasn’t he? Nice technique, that’s gonna be a tough time to beat, those kids are mean tonight.”

For the fourth event, we have the Temperature Adventure, which is designed to simulate hot flashes while you are in the midst of asking for a raise from your meticulous boss. While your body appears to have been dunked in liquid nitrogen and then in boiling oil, you get points added or deducted based on successfully navigating questions about sweating and your company’s financials.

Like the Wig Gauntlet, the fifth event—the Concentration Melee&mdash;also has three substations. The Concentration Melee takes place one day before you receive results from your first post-treatment follow-up scan. At the first station you must read and digest the last hundred pages of The DaVinci Code. A 50-item, fill-in-the-blank test is then administered. Next you have to pay a stack of bills by correctly endorsing all of the checks and separating fake bills from those that are legitimate (such as from the Guinea Pig Rescue Fund). Finally, you finish the Concentration Melee by helping a hyperactive 12-year-old with her algebra homework. Don’t worry, we’ll always have emergency medical crews on hand.

The winner of the sixth event, the dreaded Managed Care Relay, will be the first person to successfully get rid of an errant charge from his or her medical bill. Contestants, who are given a pay phone and one roll of quarters, are eliminated for screaming, flailing, or having a seizure. (This is also a no-handgun event.) Fortunately, the relay tends to be slower than a cricket match, so tickets are easy to come by.

Next, we have the Future Test, where entrants have to make holiday plans for one year from today, including providing a sizable down payment. For example, you can book a cruise, reserve an R.V., or make plane reservations (without trip insurance). Talk about gutsy! Style points are awarded for bold vacations such as climbing Mount Rushmore, scuba diving a submarine wreck, or kayaking Niagara Falls.

Last but not least comes the Small Talk Event, where the brave contestant has to drive to work worried that the pain in her upper arm signifies a relapse, and then, after arriving, convincingly talk about the weather for 15 minutes with blathering coworkers. This is rated and judged by a team of psychologists, psychiatrists, and your English teacher from seventh grade. The announcers might whisper, “She’s doing great! Her introduction of cumulus clouds and pressure systems was really first-rate! She’s sure to be in the money with this mindless monologue, but oh no, she’s rubbing her arm, the judges won’t like that!”

I don’t care a whit for a man who can rope a calf or stay atop a bull. After the challenges of getting back to normal after cancer treatment and then watching my wife do it also, I know it was harder than riding a bull for a few seconds—although it may be akin to being run over by the bull. That’s why I’d worship the winner of the Return to ‘Normal’ Rodeo. I’d join her or his fan club and be the first to buy the coffee mug, umbrella, or T-shirt that says: Survivorship&mdash;I Conquered the Real Bull.

Returning to 'normal' after cancer can sometimes resemble a rodeo.

Dan Shapiro, PhD

Coming Back Out of the Closet

A Dress for Duress

Return to 'Normal' Rodeo

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