the art of losing’s not too hard to master
though it may look like (Write it!) like disaster.
Elizabeth Bishop, “One Art”
It’s hard to know what to say to a three and six-year-old when you have cancer. My first doctor, when I sat down with her after a botched biopsy, never said the word cancer. As she looked at my husband and me across the little table in a white conference room, she knew exactly what she was looking at on the mammogram. “A suspicious group of teenagers” is what she called the calcifications. As she said, “We are fine when there are just a few teenagers hanging around, but when a whole pack of them show up, we get worried.” I found this analogy fitting, funny, and disturbing. As a long-time teacher of teens, I know how people see teenagers as a threat. At some point, their parents don’t know how to talk to them and strangers don’t know how to approach them. Adults are embarrassed and intimidated by the power and energy of their youth. Even she could not harness the unpredictable nature of the word to utter it.
From the beginning of my diagnosis, I tried to be as transparent as I could with my two girls. When it was no longer feasible to hide why I had not been at school, why they had numerous afternoons with sitters, and why our neighbors were driving them around, I boiled it down to language they could understand. As far as I remember, the conversation happened one sunny afternoon in March, perhaps as the blossoms on our honey locust were just beginning to break through, and went something like this: “Girls, mommy has something important to tell you.” I am sure I used my teacher voice, one that is instructive and clear, yet sympathetic and serious. They knew that when I used this voice, I had something important to say. “Mommy has a sick right boob.” They knew what it meant to be sick; both of them had enjoyed time on the couch, watching movies and eating toast with butter, recuperating from a night of throwing up or fever. They knew that sickies, as we liked to call them in our house, got better. For them, sick was a temporary, not permanent state. And boob felt like a better word than breast, which felt so formal, so foreign. My little girls, staring at me, hardly even knew what boobs were. They knew I had breastfed them, but they were not quite sure how that whole process worked. In the bathtub, they had only just begun to realize that they had tiny nipples, but they had no idea why they were there or that any of it could get sick.
“Is it going to get better?” my six year old asked, her voice full of hope and possibility.
“Of course it is,” I assured them. “I just need to go to the doctor and take care of it.” I made the process seem so easy and digestible. Perhaps, at this point, I was trying to convince myself rather than them.
My three-year-old, totally appropriate to her age and developmental stage, asked with no malice and only love, “Can we have a snack?”
At a support session at the Cancer Support Community of Philadelphia a few weeks later, I was given a free copy of How to Help Children Through a Parent’s Serious Illness by Kathleen McCue, M.A., C.C.L.S. Like my mother, I am not a self-help manual reader. I mistakenly rely on my common sense and intuition and often reassure myself that I know more than any book could tell me. When I read something, I often hear the brazen voice in my head say, I totally knew that. When I read this book, I realized I was not that smart.
On page fifteen in bold letters it read, You must tell your children the truth and then just three pages later it stated: Tell them the name of your disease. Already, I had failed.
At this point, my children didn’t know the word cancer. There was no family history, so if I were to say it, to send the word out into the March air, they would have had no idea what I was talking about. Obviously, it was I who couldn’t handle it. Like my first doctor, I was unable to name it, too scared to say it aloud, too intimidated to speak the word so loaded with what I knew could be suffering and death. It was I who could not explain that what I had was not contagious and was not because of something they had done.
Later, in an effort to include them in my treatment, I had my older daughter decorate my red medical folder. At the top are our names, mine ringed in red squiggly marker. Then below my name is a large black rectangle swirled with a white crayon. Next to the rectangle is my husband and me suspended in a large, hazy, black sun bubble. Below us are three figures: one is her little sister, the other her, and the large one on the left is me. We seem to be walking in a miasma of purple, black, green and gray. In her imagination, I could be in two places at once, walking hand in hand with her and floating above her and her sister. As instructed, I took it with me to every appointment; the nurses commented on how “sweet” it was and a long conversation about my little girls always commenced.
At 40, with no discernable medical history of breast cancer, I faced the total removal of my right breast, a breast I had finally grown to appreciate in its size and shape, its post-breastfeeding sagginess. Something about this picture, like the one my daughter had drawn on my medical folder, did not make sense.
But on a Monday morning in early May, the honey locust in full bloom, my oncology surgeon performed a “skin sparing right modified radical mastectomy” during which he deconstructed my right breast by basically removing all of its “axillary contents,” and a fat pad from under my right arm. I had invasive breast cancer. (Write It!). At the final analysis of my palpable lump, there were three additional “adjacent round irregular enhancing masses measuring approximately 11×14, 13×9, and 11×6 mm respectively.” This was bigger and more unwieldy than any group of rowdy teenagers.
Then, my plastic surgeon came in and reconstructed my right breast with a “free muscle sparing free TRAM flap.” It’s a long, arduous, and involved surgery. Basically, my oncology surgeon had left a breast shell to fill like a cannoli or pie and my plastic surgeon had filled it with the tissue and fat from my stomach, a process called “autologous tissue transfer.” It is an intense surgery that many women do not choose. According to the American Society of Plastic Surgeons in 2012, “Of the 91,655 women who had reconstruction…in the United States, a vast majority opted for implants, with 64,114 choosing silicone and 7,898 choosing saline…Just over 19,000 women chose autologous tissue transfer.” I can understand why. It requires two skilled surgeons to be in the room, with perfect timing and superior sewing skills; at least five or six hours of slipping around in the twilight of anesthesia; two major healing wounds, one like a twenty-four inch smile across my abdomen, the other like the border of an island in its own sea; five full lonely days in the hospital; tubes to be cleared and cleaned; an inability to stand up straight for weeks; fear of never being the same again, fear of recurrence; and a final reckoning, what’s done is done.
My surgeon had performed his trick, sewn two vascular systems together. For five days, they kept my “new boob” under close surveillance. Every hour for the first two full days, a team of rotating doctors would show up to take my new right breast’s “pulse,” to see whether it was alive and pumping blood.
When I came home from the hospital, a place my girls never visited, they asked over and over again, “When are we going to get to see your new boob, Mommy?” But I hid myself in my bathroom when it was time to clean my drains and held my breath when I was changing to get in the shower both out of fear that they would walk in and fear of my new body. I would dodge my nervousness about my new state with jokes with the girls about the old boob and how my new one was so firm and high, how lucky I was to have a forty-one year old breast and a new twenty-five year old one.
Three and six-year-old girls have a strong sense of justice, and they are unbending in their sense of what they feel is right and wrong. Developmentally, they are egocentric and concrete thinkers, so for them, no time had elapsed since I had told them I had a “sick boob” and now had a “new boob.” My beautiful and innocent girls had only had their own needs in mind. So over and over I would hear their insisting, their pleading, “It’s not fair, Mommy. You promised.”
I had promised them a “Boob Party,” and today was the day I was going to show my daughters my newly constructed right breast. I wanted to show them that I had been demolished and repaired. I wanted to tell the truth.
It wasn’t about following the helpful advice in the manual or about being truthful. Now, it was about not hiding myself from them anymore. It was about being honest with myself about my own pain and loss. I had to show them; I had to actualize it, so I could begin to heal.
Showing them meant I could not keep my own pain and beauty from my two little girls, whose smooth backs I rub at night and whose hair I wrestle a brush through every morning, whose deep brown eyes, so different than my light blue ones, have looked up to me since they were born and invited me to be strong, infallible, and alive.
I was nervous and anxious. My oncologist, known for his skill and precision, had done an excellent job, but he had scraped too close to the shell of my skin, and it had left me with half-moon border of black scab. Rusting like a coat of armor, almost beetle like, it was hideous. Had he been too ambitious? And me, was I too ambitious to think that my two little girls would be more offended by the breaking of my promise or showing them a monster? I could have waited, could have deflected their insistence, could have kept my secret housed and contained, where it belonged.
My daughters’ bedroom, a large airy space with bay windows, was painted pink. By the windows, they had set up their pretend kitchen. Here they acted like chefs and made sandwiches with brown plastic patties that doubled as hamburgers or cookies. They made desserts with plastic fruits like bananas and peaches and crowned them with lettuce or half of an onion. In kindergarten, my older daughter painted a replica of one of Georgia O’Keeffe’s paintings on real canvas. Its desert oranges and reds, a mountain disappearing into the setting sun, a vision she had never seen, hung on a pink wall. The brightly colored wagon wheels we carted home from Sarchi, Costa Rica, were there too, next to a painted yellow lizard, crawling its way down the wall.
These treasures stared at the three of us on our brightly colored picnic blanket in the middle of the room. Upon first glance, it looked like any ordinary breakfast party. We had paper plates and cups; my girls had decorated their bed with streamers, and there was a plate of hot steaming banana muffins in the middle of the room. My husband had made bacon, too, so that waited patiently in the middle of our island.
Here, it was just us, no probing doctors or flimsy open papery gowns. There were no medical students touching me with their cold hands or asking me the same awkward questions. There were no more surgeries or tests; it was just me and my two little girls and my desire to show them that I had gotten better just as I had predicted.
As we sat around the banana muffins and bacon, the anticipation rising, I asked, “Are you ready?” I was still in recovery mode, hanging around the house in pajamas and slippers. I felt good today, not like other days, when the heaviness of it all crawled up my spine and into my heart, leaving it laden with sorrow.
They squirmed with anticipation. They had no idea what to expect. “Yes, Mommy,” they answered. “We are ready.”
I quickly revealed to them my “new boob” and its slithery black skin. Immediately, I knew I had made the wrong choice. My own need for transparency and truthfulness had not taken into consideration their potential for horror, shock, disgust, and confusion. My younger daughter cried and wanted to snuggle her head in my lap. My older daughter looked absently around the room. There was a long silence, punctuated only by my younger daughter’s whimpers. This was beyond their comprehension, beyond their level of understanding. I had crossed the line, shown them a monster.
At that moment, I botched the directions in the book. Even though the book said to be honest and open, it also said not to go past their level of understanding. Sitting among the bacon and muffins, my own pain and disrepair, I regretted what I had just done. What was safe and secure in their limited imaginations was now real, scabbed, nipple-less, and oddly attached to one of the most important people in their lives. Where there had once been safety was now a question, where there once had been a fully-functioning breast that both of them had nursed from was now a void, a tree without leaves, a setting sun. I had honored my promise, and I had done what I felt was right, what I felt at the moment would make all of us feel better.
It’s hard to know what to say to a three and six-year-old when you have cancer. Being honest and open with my girls was difficult and arrived with unanswerable questions, anxiety, and fear. It exposed my vulnerability and revealed to them at an age much earlier than I expected to that I was imperfectly human.
I already knew the answer, but I asked in a shaky voice, “So what did you think?”
Of course, they both replied, “I don’t want to see it again, Mommy.” I understood.
What they saw that morning will most likely be ingrained in their imaginations as something frightful, scabbed, and reptilian, something they cannot quite understand. I cannot lie; I saw myself the same way. But that morning also allowed me to see myself in a different light, one where I was brave and finally admitted I was forever changed. Lady Macbeth was right when she said to Macbeth, “what’s done is done.” At this point in the play, they could not turn back in their murderous pursuit for power, and I could not change what had already happened. I had to accept the loss of myself with the joy of being alive, emptying and filling myself with both every day.
A year after our “Boob Party,” I asked my younger daughter what she remembered. Clearly and thoughtfully, she said, “The muffins, Mommy. I remember the muffins. I don’t think I liked those muffins very much, Mommy. I don’t want to have those muffins again.”
Jenny A. Burkholder‘s poems haves appeared in New American Writing, Glimmer Train, and poemmemoirstory, among others. She lives outside of Philadelphia with her photographer-husband and two fairy house-building daughters.