How Cancer Helped me Find my Superficial Self

This is the text of a speech I delivered a few months ago at a breast cancer awareness luncheon. I’m posting it today, April 13, which marks the two-year anniversary of my bilateral mastectomy. It is for all those women just beginning their journey with cancer. You are not alone.

There are three things about me that, if you know me well, you know are very true.

First, I am the eternal optimist, seeing in each person, including myself, the ability to do anything. I believe that our greatest failures are when we fail to try, when we fail to believe in ourselves. That belief let me have a one-on-one conversation (albeit short) with President Clinton when he and I ended up in the same restaurant in NYC. While everyone else watched the President and his buddy Kevin Spacey sit at the bar sipping beers while watching a basketball game, I walked up to a secret service agent and asked if the President was welcoming visitors. The agent said no, absolutely not, but Bill—we’re friends now so I can call him that—heard my question and he said, “Certainly young lady,” and waved me over and so I smiled at the agent who glared at me and made my way to the bar where for the next five minutes or so we talked about education (my favorite topic) and basketball (his favorite topic of the moment).

That belief in possibility lets me sit beside tenth graders who read at a third grade level and tell them with sincerity that if they will trust me and try even a little I am sure they can become better readers.

It lets me tell teachers in Texas and many other states that in spite of state and national legislation that is making their job all but impossible, I believe in their ability to help the students in their classrooms. I stand in schools that are surrounded by high fences with barbed wire across the top, where police arrive to tell a student that his father has shot his mother, where 90% of the students arrive for a free breakfast, their first meal since yesterday’s free lunch, and I tell teachers I believe in them and their ability to positively affect a child’s future because I do. Ever the optimist, I do.

Along with being the eternal optimist, comes my second trait. I am also a world-class worrier. If you say you’ll call me at 9 and by 9:30 I haven’t heard from you, I’m pretty sure I should start calling hospitals. You’re in no pain, (my worries cause me pain but never you), but you’re obviously now paralyzed because you can’t manage to hit the “call” button on your phone and additionally your trachea has probably been crushed because you can’t even whisper my name and phone number to the paramedics. I try to image life without you and can’t and as my heart races and palms grow sweaty I wonder who should be notified first. And then I realize that I don’t have the names and cell numbers of those you would want me to call to inform them of your trachea-crushing, spinal-cord-severing injury. When you do call, you are a bit confused when my first request is that you send me the phone numbers on your “favorites” list so that the next time your trachea is crushed and your body is paralyzed I can let others know. And because I’m the eternal optimist, I’m positive you’ll do that so when the accident happens, I’ll be prepared.

My kids gave up trying to convince me that a slightly late call doesn’t have to mean immediate disaster. It could mean the cell phone battery was dead; or it might mean a meeting ran late; or it might mean, heaven forbid, one simply forgot to call. I suppose each of those is true, but when you are a worrier, those rationale thoughts aren’t your first ones. And when the late caller finally calls and I realize all is well, I justify my worry with “But, you could have been hurt, lying in a ditch, unable to crawl to your phone, needing me to wonder which ditch you are in so I could come to your rescue; so aren’t you glad that someone in the world was worried about you?” My children simply sigh.

Trait number three. I am a procrastinator. Because of that, I love deadlines. I believe they exist for a reason, a single reason: to meet them. Not to beat them. Deadlines don’t race against you. They merely loom. Waiting. Patiently. Tauntingly. I won’t miss a deadline because then if you are also a worrier, you’ll think I’m in a ditch someplace and I wouldn’t want to put you through that. So if you tell me the article I’ve agreed to write is due by close of day, I’ll double check the date and I’ll ask you which time zone and then I’ll get it in, seconds before the deadline would pass.

So there you have me: I’m a procrastinating worrying optimist. My family and dear friends—many here today—are all saints for loving someone so strange. My doctors—also many here today—are super saints. You have earned that label because you were thrust into my life, my quirkiness, with little say. Once I arrived in your office, you found yourself treating a patient who simultaneously believes she has conquered this horrible disease called cancer while knowing that each new ache means it has spread, but then pushing the limits of how many times an appointment might be rescheduled. Surely the doctor I need is an analyst and not an oncologist.

And so, all three parts of me—optimist, worrier, and procrastinator—entered a new phase of life on March 12, 2010.

On that Friday, I was home working. I’m a writer, so working means sitting at a computer trying to get words on a page—or rather on a computer screen. A deadline was swiftly approaching and I was in a zone I love—words were flowing; ideas were crystallizing; and adrenalin was surging, meaning mornings started early—4:30 a.m.—and nights ended late—12:30 p.m. It’s that creative burst as the deadline brags, “You won’t make me” that I feed on and when it hits, no deadline has a chance. But this day, Worry raised its hand and begged to be heard.

“Go away,” I said to Worry. “Step aside as I do not have time for you today.” But Worry is jealous and kept tugging at me until I finally admitted to myself that something didn’t feel right. Something deep inside my right breast felt odd. Ached. I tried lowering my desk chair then raising it; I put a pillow behind my back; I changed bras. I stood and stretched. Pulled back my shoulders. Breathed deeply. Rolled my neck. But by noon, Worry had settled in for a stay and I decided I had breast cancer. Probably with only hours left of life. Rare type, most certainly never recorded in AMA journals.

Before I could play out what would happen next, Optimism arrived and nudged Worry out of the way. “Don’t you remember?” Optimism shouted. “Breast cancer doesn’t hurt. Fibroid cysts hurt. They come from caffeine and you’ve been mainlining caffeine for several weeks now. You’ve got fibroid cyst disease. Stop drinking caffeine.”

And with that new thought, I poured out my fourth cup of coffee for that day and vowed never to drink caffeine again. To rid my body of the toxic stuff, I stood at the kitchen sink and drank eight 8-ounce glasses of water, in a row, to flush the caffeine out of me. And then I peed for an hour.

But the deep ache didn’t go away and Worry whispered in my ear that something really was wrong and it wasn’t a fibroid cyst. It wasn’t caffeine.

And so, Worry beat out Optimism and Procrastination and I called the imaging center at St. Luke’s here in The Woodlands and asked how soon I could get a mammogram. Told a kind woman that something didn’t feel right. She said I should come on over. “Next week?” Procrastination asked. “Nope.” she said. “Come on over now.” I called Brad and told him something didn’t feel right but said he should stay put at his office downtown. Be he, knowing that my ability to procrastinate on everything meant I rarely went to the doctor, understood that if I had interrupted a writing day then I was concerned. I’m rarely concerned about me. I’m much too busy worrying about others. He began driving to The Woodlands from downtown while I was donning a gown at St. Luke’s.

I told the technician who was doing the mammogram that my right breast hurt. She asked if I had felt a lump. Not at all. Just deep inside, it hurt. She nodded and began taking a series of images. First this breast, then the other. When was your last mammogram, she asked. During the previous century my procrastinating self slowly admitted. But late in that century, my optimistic self added. She withheld judgment, finished taking images, told me to wait just a moment while she asked if the radiologist wanted more. Sure enough, a few minutes later she returned and said if I didn’t mind she’d take just a few more images. She looked at me and my eyes filled with tears.

Not too long after that, Dr. Ghobashy, an angel parading as a radiologist, appeared and told me that I didn’t need to go home wondering, that wondering can lead to worrying (indeed!), but that I did have a mass, very small, in my right breast and she couldn’t believe it hurt but she was nearly 100% certain it was cancer. And then she told me what I never expected: I had cancer in the other breast, too. “No.” I told her. “Just the right side; left side doesn’t hurt. No cancer there.” “Yes,” she said. “Look.” And so I looked at the computer screen at the image of the left breast and saw a cluster of white—she called the cluster calcifications and said that while calcifications often aren’t cancerous, she was sure mine were, and she said something else but I wasn’t listening because I knew that whatever she wanted to call it, it wasn’t good and wasn’t normal. “And here, in the right breast,” she said, pulling up that computer screen image, “you’ll see this black mass, right here, very small. Cancer. Invasive.” White mass in left breast. Black mass in right. Nothing grey anyplace; no ambiguity at all. No grey area. Cancer. Two kinds. One in each breast.

She reached out and touched me and I was back from wherever I had gone. Around me were women, nurses, angels, who stood close and for a moment we all shared the same air, shared the same fear, shared the same dread. We were one and for a moment we were invincible. “We should do a biopsy,” she said. I nodded. “When?” she asked. Procrastinator shouted at me, “Later. Never. When pigs fly,” but when I opened my mouth what came out was, “If we do it now, I can probably still be home in time for the dinner party at my house at 6:30.” She offered me a Xanax, quite sure I wasn’t coping. I took two.

Brad arrived; my dear friend Suzanne arrived. I called other friends Catherine and Linda. They convinced me the dinner party wasn’t important. I was surrounded by nurses who told me they were there with me, covered me with warm blankets, and while lying on a bed with a very long needle being pushed once and then twice and then a third time into one breast and then the other, I found myself remembering an incident with my son, Baker, when he was 4.

At that age, Baker loved to run through the house naked. Well, naked except for a crib sheet that he liked to wear as a magic cape. That yellow crib sheet turned him into Superman, made him invisible, let him become a roaring lion, and, when tired, served as immediate blankie for a nap any place. But he was naked and his older sister was quite tired of that especially when her friends came to play. “Mom, you have got to make him put on clothes. I do not care if he thinks he’s invisible; he is not.”
I thought that was a reasonable request, and so I called Baker to my bedroom and explained that if he wanted to run around naked in his room all the time, that was fine, but he was old enough to understand that when he was outside of his room then he really should keep his private parts covered. He listened intently and nodded seriously and announced, after some mulling of this idea, that he could do that. He headed toward his room, for clothes, I presumed. Five minutes later he zoomed through the den and Meredith shrieked, “Mom he’s still naked” and I heard Baker tell her he was not, that his private parts were covered and she yelled they were not and he yelled they were too and I arrived as quickly as possible to see my four-year-old wearing nothing but his birthday suit and his magic yellow cape standing up on a chair with his arms crossed against his stomach so that each hand could hold—an elbow.

Where are you clothes?” I asked. He told me he didn’t need any. He said I had told him to cover his private parts and he had done that. I told him he was holding his elbows. He said that was right; that he had thought about it and decided that of all his parts, his elbows were his most private parts. Meredith said Oh good grief and left me to figure this one out. Baker continued, “I don’t look at my elbows too often because they are hard to see and I figured that anything that is hard to see is probably your private part.” And with that, he jumped off the chair, and went running after our dog, yellow cape flying and elbows carefully covered.

And so, fifteen years later, I lay on that bed, robed in a hospital gown that bared my breasts for all in the room to see, with images of a white mass and a black mass in my mind’s eye, trying to remember if I had already set the table for the dinner party that I kept forgetting would not be happening, praying that my husband would arrive, that my friend Suzanne would get there immediately, and I looked down and realized I was clutching my elbows.

The next few weeks took me to a surgeon named Redwine (Redwine and Beers—of course) and to a plastic surgeon who was the first person who ever made me happy to have that middle-aged-I’ve-had-two-children-tummy-fat. “Ah, you’re a perfect candidate for a type of breast reconstruction that uses stomach fat,” he said, and I was suddenly vindicated for loving pasta and wine more than I loved broccoli and sit-ups. I fell in love with him for seeing me as perfect for something. He’s the same doctor who would not tell me that I could not go to Winnipeg, Canada, fourteen days after surgery but strongly suggested I might not be up to it. He was right. Fourteen days after surgery I could not walk from one end of the house to the other without stopping to rest. Fourteen days after surgery I had not yet looked at my naked self in a mirror. Fourteen days after surgery I sat in his office, clutching my elbows, and crying.
Do you hurt someplace, he asked. I shook my head no and gripped my elbows more tightly. Have you talked with other women with breast cancer, he asked. I cried more and again shook my head no as my nails dug gouges into my elbows. Can you tell me why all the tears, he said, and I knew then that my private parts had nothing to do with breasts or belly buttons or any other body part. Baker had it right all along. Private parts are the parts that we barely ever look at because they are so damned hard to see.

My most private part was deep underneath the procrastinating, worrying, optimist woman. My most private part was named Fear. I was afraid. Not afraid of the word cancer. That’s not the scary word. The scary word is spread. And underneath that was an even more basic fear: what if the person I loved, the person I the most wanted no longer found me attractive? What if I wasn’t pretty to him any more? At one level, I knew better than that. Love isn’t shallow; love isn’t skin-deep. The problem was, since the surgery, I was shallow; I was skin-deep.

As I sat in Dr. Schusterman’s office, I remembered the weeks right before surgery walking through the mall, looking at women in an all new light—I checked out breasts and watched when a perky pair caused men to stop and stare. Those breasts are her breasts, not reconstructed ones. I thought of the woman who asked me if cancer meant I had lost my breasts. Lost them? As in they were misplaced? No, I had not misplaced my breasts. They were taken from me. By a disease named Cancer. I thought of the day the phone rang and a nice man asked if I would make a donation to help support breast cancer. What? I said. “We’re collecting money to support breast cancer,” he repeated. No, I told him, I don’t support this disease at all. I hung up. All I wanted were real breasts. My breasts. For years, I realized, I had lied to my children telling them that what mattered most was what was on the inside. Not true. What mattered were nipples. And boobs. And mine now looked funny. Odd. I didn’t look normal. I couldn’t be loved. I wasn’t sure who I was any more.

And so I sat in Dr. Schusterman’s office, clutching my elbows, and whispered that I was afraid I wasn’t pretty. I was afraid I wasn’t loveable, wasn’t worth loving. I uncovered that most private part of me. My most private part was named fear and once I realized that as long as I held on to my fear, then I would struggle. But when I looked at fear and shared it, then what seemed hard became doable.

“I don’t feel pretty,” I said. And as I said it, I was embarrassed at this superficial revelation. He sat with me and listened. My fear at that moment wasn’t that some stray cancer cell was making a bee line for my liver. My fear was my breasts, still healing, didn’t look normal, didn’t look sexy. “You are healing great,” he said. “No I’m not, “I said. “I feel broken. I don’t feel pretty.” As I told him my fear, I noticed my elbows no longer throbbed because my hands no longer clenched them quite as tightly.

He nodded and then told me he thought he knew what would help. “Xanax?” I suggested. “No,” he said. I waited. What would this man, this lauded surgeon, who was rebuilding me one bit at a time, tell me? I nodded at him, urging him to go on. “Go buy a pretty bra,” he said. “Excuse me?” I said. “You want me to go buy a pretty bra? That’s it. That’s your advice?” “Yep,” he said. “Go to Top Drawer over by the Galleria and buy a pretty bra. You have pretty breasts, and you need to just feel pretty again. In fact, buy two and call me next week.”

I left and Brad drove me to the most expensive lingerie store I had ever visited. I stood looking at the white cotton no-nonsense 18-hour support bras and thought how much I liked the idea of a garment promising me support for 18 hours. But I pushed past that sensible promise and eventually stood staring at the skimpy black lacy bras. No tag promised support of any sort. A saleswoman approached me. Can I help you? she asked. I looked at her, let go of my elbows, and explained that I had just been sitting at my computer working when I felt a pain and instead of having a dinner party I had a mammogram and then a biopsy and then a bilateral mastectomy and then some pretty serious reshuffling of body tissue for reconstruction and now my plastic surgeon had recommended a pretty bra when I told him I was sad and I thought that was ridiculous because there was nothing about me that felt pretty and on top of everything I had missed my deadline and I never miss deadlines . . . I paused for air and she ushered me into a fitting room, probably to get me away from the sane people in the store, and while I stood there crying she undressed me, put the black lacy bra on me, and turned me to face the mirror.

She pulled back my shoulders, stood behind me, and whispered, “You look good. Very good. You have boobs a 25-year-old would covet.” I looked. Cleavage. Smooth skin peeked over the top of the lace. No scars showed. I turned sideways. No tummy. I smiled. “Maybe you have this bra in red, too?” I asked. “Maybe I do” she said smiling. “And maybe some panties, high cut in the leg?” She nodded, “I do.”

I left there an hour later explaining to Brad that the $350.00 lingerie bill was doctor’s orders.

In the many months since then, I’ve embraced my new superficial self. I linger over lipstick colors. I buy perfume on a whim. I’ve become a vegetarian and if any one asks why, I’m happy to report on the studies that link good health to vegetable protein. I carefully choose which mushrooms we eat. I grow tomatoes. I’ve taken up running, or at least I’ve bought the right Nike Barefoot shoes that proclaim I’m a runner.

I am learning, little by little, to find those private parts and, when needed, uncover them. I’ve learned that even the most private parts, at difficult times in our lives, have to be made at least somewhat public, accessible to those who need to know, not as intruders or spectators, but as allies and friends. Some matters just can’t be handled completely alone. None of us is an island. We need other people, and never more than when we would most like to retreat and withdraw. But there are, if we are lucky, people there, like these nurses and doctors and lingerie saleswomen, who can be welcomed into private places, private moments, and help us through them.

And so now with my doctors—plastic surgeon, oncologist, and now an orthopedic surgeon for a newly torn rotator cuff—I arrive wearing my sexiest bra and more likely than not I’m wearing something sleeveless, elbows bared, my own personal reminder that sometimes our private parts, those parts so hard to look at, need to be uncovered. I ask questions. I argue. I don’t say yes immediately. I do things in my own time. When I asked Dr. Nelson, oncologist extraordinaire, what questions I had failed to ask after one near two-hour visit, I believed him when he said he was sure there was no question I had not posed. And I am most grateful for the ways family and friends, doctors and nurses stand with me, with all us women who face each day with cancer somewhere in our minds.

When Dr. Nelson told me he wanted me to start a drug, an aromatize inhibitor, to squash any remaining estrogen in my body, but that drug might cause joint problems, and perhaps hot flashes, and maybe mood swings, and perhaps a loss of bone density so I’d need a bone density test and if that came back showing problems, I’d need to start another drug that would fight bone loss. “Haven’t I heard that that drug causes fractures?” I asked. “Well yes,” he conceded, “it does that and it has been known to severely weaken jaw bones so we’ll have to be careful with any dental work.” Of all that he said to me what I remember the most is his comment that “We’ll have to be careful.” He was in this with me. Me and my oncologist. Facing cancer together.

Surely a partner in this quest would understand my request: “Ok, but this sounds dreadful and I feel anxious, so I’d like a prescription for some Xanax. OK? I just want the constant gnaw of anxiousness gone.” He shook his head no. “Why not?” I asked. “It might be habit forming,” he responded.

“Are you kidding me,” I said. “My breasts have been removed, my cancer might return, my estrogen is gone, my bones might disintegrate and you think I’m worried that I might come to rely on this magic pill that takes the edge of anxiousness? Are you kidding me?” “Nope,” he said. “You will be fine without it.” Will not, my worrying self thought. He read my mind. “You will be fine,” he repeated. My hands were by my side; my private parts were showing. I looked at Dr. Nelson who was willing to go on this journey with me, quirky me, some days optimistic, other days worried. Together we were facing my fears. He had my back.

I dressed, putting on my sexy, lacy, black bra and I walked out of there, into the world, elbows showing.

Thank you, each of you, for the journey you take with all of us who live with cancer. You give us the courage to face our private parts.

 

22 thoughts on “How Cancer Helped me Find my Superficial Self

  1. Kylene,
    You can now add brave to that list of traits. Thank you for sharing your personal journey and revelations with the numerous educators who admire you and your tireless efforts to improve literacy and literacy education.
    Sincerely,
    Brenda Ellis

  2. Kylene,
    Thanks for uncovering yourself for us. Your work as a literacy leader is admirable and baring yourself here personally, deeply inspiring. Survivor stories leave sorely needed markers for others to follow on their journey.

    Beth

  3. Kylene,

    This is the art of writing. I have read it twice, once for story and once for craft. Now I want to read it again. That honest, steady voice of all we all fear when the c-word comes into our lives is just what I needed this morning.

    Penny

  4. Followed a link from Penny’s tweet – although I certainly know who you are and am a fan.

    Thank you for sharing this. Ironic, isn’t it, that cancer seems to bring out the best in people.

    Your journey – and your ability to share it so eloquently – will, no doubt, touch a great many people.

  5. The highest compliment I give my students is WIWI (Wish I’d Written It). I’m saying that to you now: WIWI. I’m 6 years (just wrote “hours”) out from my cancer diagnosis and mastectomy and felt my own experience in much of what you said. That’s what a good writer does for me: shows me what I was thinking and feeling. Thank you so much.
    Allison Berryhill´s last blog post ..Year-end poem for Liz

    • Well, I’m stealing WIWI. LOVE that! And thank you for that highest of compliments. And congrats to you for 6 years–though I agree it is easy to sometime see it more in hours than years!

  6. Kylene-
    I have been in a state of constant anxiousness this week and my friend Franki, after experiencing my pain reminded me to read your post twice this morning. I have been channeling my stress into cleaning today but finally stopped to listen to her and now you. Though I am not a cancer survivor, your words were the powerful reminders I needed to tell myself to embrace fear and let go. I wept through your post feeling your voices of worry, optimism and procrastination. And, quietly laughed through the lingerie bill line. Thank you for sharing this beautiful piece of writing and reminding me that suffering makes us stronger.

    • You are so very welcome. More thanks to Franki for sending this piece on to you. Fear, when shared, is rarely as hard to face.

  7. I’ve followed you for 7 years as a teacher of reading and writing. Now you are following me as a breast cancer survivor (17 years and counting). See that you keep up with me – teachers and students need you to stay around.

  8. Thank you, Kylene,

    You lead us from the classroom and far beyond. I am with Penny on this piece of writing; it just wowed me. Laughter and tears, the yellow cape, the elbow anecdote, amazing writing I would have loved to heard delivered. Thank you for sharing your private parts and showing us how to walk with courage and live with zest.

    Lee Ann

  9. Adknowledging that I need someone else to get through a difficult time challenges me more than anything else in my emotional life. Your accounct illustrates the importance of meeting that challenge. Thanks for telling your ongoing story.

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