The first book on the subject of breast cancer survival from the point of view of a woman who has the support of seven sisters, If We Must Dance, Then I Will Lead combines memoir and science writing. A fresh voice tells a story of surviving a labyrinth of knives, needles, and radiation beams. Jane and her sisters were cut from the same cloth. The nuns told them, "Take it on the chin;" Mom said, "Offer it up for the poor souls in purgatory;" Daddy said, "Mind your mother." There they were, grounded in acquiescence, long-suffering, and obedient when the beast tapped her on the shoulder and asked, "Shall we dance?" If We Must Dance, Then I Will Lead is laced with humor to soften the starkness of medical terminology. Julie, the certified cranial prosthesis fitter, sets Jane up with a wig that gives her a hairstyle that looks like the ladies at Thursday night Bingo. Esther, the breast prosthesis fitter, insists that she's a D cup when she's been a 36B since high school and doesn't like the look of a rubber nipple showing through her sweater! This memoir will encourage women to advocate for themselves in the scary world of oncology.
If We Must Dance, Then I Will Lead
A Memoir of Breast Cancer SurvivalBy Jane RuddeniUniverse, Inc.
Copyright © 2010 Jane Rudden
All right reserved.ISBN: 978-1-4502-1178-9 Contents
About the Author............................................................................ixForeword by Daleela Getsiv Dodge, MD........................................................xiIntroduction................................................................................xvChapter One We Interrupt This Life for Cancer-Discovery and Diagnosis.......................1Chapter Two Tunnel Vision-Preoperative Testing..............................................19Chapter Three Measure Twice, Cut Once-The Lumpectomy........................................33Chapter Four Elective Mastectomy-Not This Kid...............................................47Chapter Five Showered with Comfort-Siblings Hear the News...................................53Chapter Six You Look Maahvelous-Bald Is Temporary...........................................63Chapter Seven Supersize My Order of Antinausea Meds-Chemotherapy Begins.....................71Chapter Eight The Buzz Cut-Chemotherapy #2..................................................81Chapter Nine Take This Port and Shove It-Chemotherapy #3....................................89Chapter Ten Smile, You're on Lovenox-Chemotherapy #4........................................97Chapter Eleven Adios, Chemosabi-The Kindness of Taxol.......................................103Chapter Twelve The Unfair Flag, Long Does It Wave-The Mastectomy............................115Chapter Thirteen One Is the Loneliest Number-Radiation Therapy..............................123Chapter Fourteen Inflation Elation-Breast Reconstruction....................................131Chapter Fifteen Deflation Depression-A Failed Reconstruction................................139Chapter Sixteen Denouement-Not Every Memory Is Soaked in Sorrow.............................151Afterword...................................................................................157Acknowledgments.............................................................................161
Chapter One
We Interrupt This Life for Cancer-Discovery and Diagnosis
Thursday, April 7, 2004-Monday, April 12, 2004
When the phone rang at midnight on the East Coast, I was already tucked in, exhausted from the sucker punch of the news that I had breast cancer.
"They've got the wrong girl!" said the caller.
My younger sister, Kate, the public defender, was calling from California. To say that Kate revels in finding justice for the common man would be a gross understatement. She once returned a ten-year-old skillet to a store for a refund because the bottom was warped and the grease puddled at the edges. The manager told her the store didn't carry that skillet any longer but would gladly exchange her old one for a different model. Now her days are spent in a courtroom negotiating jail time for felons, and her evenings, spent negotiating homework time, a jail of sorts, with her teenage son.
"Oh, Kate, you're too much," I mumbled in cottony half sleep. "I guess you talked with Christine and heard the news. I'm still reeling from the shock."
"You sound sleepy."
"It's midnight here, Kate."
"Well, I know, but I told myself this was a good enough reason to call so late."
I got up, threw on my robe, and went into the kitchen where I sat down at the table surrounded by all of my notes. The stove nightlight cast shadows on the wall as I reviewed the pathology with my sister and gave her some idea of what was next on the docket. Kate is the poster child for organization and generosity. She wasted no time with preliminaries.
"I'll get with Christine, and we'll figure out a travel schedule so somebody's with you for surgery and chemo. I can be there as soon as school is out." She further volunteered to get the word to the St. Louis family contingent and to my younger sister, Patti, who lived on the West Coast and kept in sporadic touch with family.
There are eleven siblings in my family-seven girls and four boys, most of them still living in the Midwest. Four of us, however, had roamed to the East and West Coasts, and the geographical distances between us, which had never mattered before, now came front and center. We had last circled the wagons of familial support at Mom's and at Dad's funerals. Mom died when she was fifty-eight years old from congestive heart failure. She'd also borne eleven surviving children, and her favorite snack was a Mounds bars chased down with Pepsi. Daddy died at seventy-three from lung cancer brought on by smoking no-filter cigarettes and rolling his own with Bull Durham. He'd set up shop at the head of the kitchen table and spread out the stock market page alongside a green glass ashtray. Bull Durham and a cup of reboiled coffee laced with Wilson's milk completed the tableau. If we'd had any guesses as to what would take us, we'd have put our money on Mom's heart condition.
My illness was an unexpected blow. I'd had my share of measles, mumps, chicken pox, and broken bones. Cancer had never been on the list of possible health setbacks. Daddy's cancer was self-imposed, after all. I'd gone through life believing I was the stalwart type, able to take on the challenges of sports, and later the challenges of balancing the stress of work with the rejuvenating effects of exercise. Someone else's bad news used to appear as a momentary blip on my screen, and I'd been grateful that their troubles hadn't been mine. I'd always taken my own health for granted-I had, but not anymore.
Only the week before I had sat in my doctor's office, legs dangling over the edge of the examination table, studying the circulatory system depicted on the oilcloth fellow mounted on the back of the door in an attempt to keep my mind off the purpose of my visit.
I had found the golf ball-size lump on April 1, 2004-no fooling-during a routine in-the-shower once-over. Soapy and slick made the perfect canvas for detection. Must be a pulled muscle, I thought. A knot, not a lump, from gardening, or maybe my overenthusiastic practicing of the routines from the "Dumbbells for Smart People" workshop. I thought, I'll give it the weekend to go away.
Lingering in the shower has always been an indulgence I savored. That day as the water streamed over me, I was lost in humming a tune resurrected from my unconscious. That's when I found it. Sensing the lump in my breast interrupted the chorus of "Crystal Blue Persuasion" and made my heart skip a beat. The abiding fear of the Big C closed my throat to any more humming.
* * *
The rustle of my chart being removed from the holder on the outside of the door signaled that my turn had come. Doctor Susan swept into the room and greeted me with her usual enthusiasm.
She put me through a series of poses to detect the lump. First, I sat up straight facing her, and she looked from breast to breast to detect any differences in size or shape. Then she gently moved her hand over my right breast, from top to bottom, feeling for the lump. I hopped off the table and bent over at the waist to let gravity take over. My breasts hung down like pendulums, and there, protruding from the top of my right breast, was the lump. The dimensions were startling.
"The good news, Jane, is it came on quickly and is free moving. You had a clear mammogram in June and a clear exam in December," Doctor Susan explained. "It could be a plugged duct, but not likely. It could be a cyst, or it could be cancerous." I was mute, staring at the circulatory system fellow but seeing a future of unknowns.
Her face showed worry as she continued. "I don't like the way it feels. We don't usually see this in postmenopausal women. Let's get you in for a diagnostic right away." Before I left, Doctor Susan's nurse scheduled me for a diagnostic mammogram and possible biopsy at the hospital the next day.
Rather than wallow in the possible extreme, I stuffed my anxiety deep inside reason and headed to my appointment with Annie, my hairdresser. A little pampering was just what I needed.
Over the years, I'd freely experimented with my hair. The first time I'd had my hair frosted, I was a senior in high school and had silver highlights put into my brunette bob. The beauty shop was within walking distance of home, and as I came along the sidewalk toward the house, Daddy looked out the kitchen window and caught the first glimpse. As soon as I walked through the door, he said, in his trademark humor that usually missed the mark, "Oh, I thought that was Grandma walking down the street."
On the drive to the salon, I couldn't help but wonder whether today's appointment might be the last time in a long time that I'd have any hair to speak of, let alone to be the subject of a style debate.
When I arrived, Annie was snacking on oatmeal. As a devout athlete who competed in obstacle course events, she had not an ounce of fat on her body. She greeted me with her customary, "Hey, Jane, what are we doing today?"
I choked back the lump in my throat and said, "Well, I have news."
"Uh-oh. Is it bad news?" she asked.
"About a month from now, I don't think I'll have any hair at all," I whispered.
"Do you have cancer? What kind? My sister has cancer." It all spilled out of her like a litany.
"I'm having a biopsy tomorrow, but it doesn't look good. My doctor's treating it with urgency," I explained, dabbing my eyes.
"Don't you worry. This is the first day of your pampering yourself. My treat."
Her warm hug was interrupted by the UPS driver's, "Got a package here." The comic relief changed the mood, and Annie set to work on my hair.
I tried my best to focus on the pampering shampoo and cut, but my mind wouldn't cooperate. Can't worry, Jane. Things will fall into place. Women survive this all the time.
Then I thought of Ed. How would I break the news to him? Our romance was new-and worse, he was a breast man. My thoughts ran toward what I felt would be the worst possible outcome-a mastectomy.
After dinner that night, I casually mentioned the doctor's appointment to Ed and showed him the order for the mammogram and biopsy.
"This is scheduled for tomorrow," I told him. "I'm sure it's just routine."
"I didn't know anything about this. Why didn't you tell me?"
How could I when I was letting my infatuation with him override the obvious necessity of sharing the bad news with him? Months would pass before I let go of the fear that the only reason we were together was because I had all my parts.
* * *
The next day I was ushered to a separate floor of the hospital's imaging center, away from the crowded waiting room on the first floor where women casually waited to be called for their routine mammograms. The diagnostic mammograms were performed upstairs, in an area with plush carpeting, a quiet waiting room with two or three women nervously paging through out-of-date magazines, and a long hallway of private rooms.
My films showed a large, shadowy mass that prompted an immediate hustle off to another of the private rooms along the hallway. Next step, an ultrasound-guided core biopsy. The air-conditioning in the spartan room nearly froze my undressed torso as I stretched out on the gurney. Just behind me, to the right, was a cart with an ultrasound screen and keyboard. See-through jars holding cotton balls, Q-tips, and sponges were lined up across the counter. Though comforting in their familiarity, they did nothing to distract me from the possibility of hearing bad news.
The hum of the fluorescent lights gave off a white noise that cut the deadening silence while I lay there shivering on the outside and trembling with anxious anticipation on the inside. I was in the company of three professionals. One was an R.N. who specialized in counseling newly diagnosed patients, though I didn't realize that was her role as she held my left hand and spoke in guarded terms about the possible diagnosis of breast cancer. Her sweet, round face was framed with curly brown hair that didn't quite hide the furrows in her brow. When she assured me there would be someone to guide me through the layers of appointments and decisions, I was stung by the inference. Wait a second, I thought, let's see what the biopsy shows. Another was a technician, whose efficiency assisting the radiologist inspired confidence in me. She talked me through the procedure and tilted the screen a bit so that I could see the searching eye of the ultrasound paddle. The third was the radiologist who performed the biopsy. She and the technician easily negotiated the steps in the procedure like longtime dance partners anticipating the other's next move. The nurse and technician remained cheerful but kept repeating the warning, "Stay away from the Internet."
They don't know who they're talking to, I thought. I'm going to find out as much as I can about this beast as fast as I can. The minute I get home, I'm going to hit the Net running. I strained my neck to see the screen as the radiologist guided the needle toward the mass. I wanted to watch everything that was happening-live. No blind obedience for me.
I had been injected with enough Novocain to tolerate the procedure without complaint, so I looked at the screen with a detached interest, as if that needle were going into someone else's body. The technician spread the cool gel on my breast with the seeing-eye paddle, slowly circling the targeted area of the lump until the radiologist said, "Hold it right there." She guided the needle, which reminded me of one of those old-timey ray guns, to the target. We all watched as the needle honed in on the mass, and I jumped like a scared kitten when the radiologist pulled the trigger. My three companions cheered with each successful plug of tissue extracted with the needle.
Once the procedure was over, I tried to engage the radiologist in idle chatter about what the ultrasound showed, but she didn't fall for it. Her answers were routine and formulaic.
"Sounds like you've done this a thousand times," I offered. "Any guesses as you looked at this mass?"
"Oh, we get a fair number of patients," she said. "We'll run some tests on these samples so you can have a preliminary report before you leave." Then she politely said, "Nice to meet you. Good luck," and left the room.
The technician hurried away to test the samples-five squiggly, opaque, wormlike forms lying on a sterile sponge-but before she left, she said, "See, these are the biopsy samples we just pulled. They look great. We'll have no trouble getting a good read from these." Then she leaned in and whispered, "I'm pretty sure it's cancer."
I stared at her with eyes widened in an effort to dam the impending tears. I will not cry here. I will not be a predictably emotional woman who falls into a fit of hysteria. I braced myself against the technician's completely inappropriate and unsolicited diagnosis, which she'd delivered with the casual air of "Fine weather we're having."
The R.N. excused herself, too, leaving me alone in that freezing room. Their routine procedure was my new experience. As they scurried off, not one of them looked back to see if I might need anything, such as a little comfort or reassurance. They just left me there, with my fear.
I'd made light of this procedure the night before when I told Ed what was going on and assured him I'd be okay on my own. After all, the appointment was supposed to be for a diagnostic mammogram, with a slim possibility that a biopsy might also be necessary. So, I'd dismissed his insistence on being with me, never dreaming I'd feel so adrift. Baloney, I thought. I'm calling Ed. There's no sympathetic familiarity here for me. I wrapped the gown around me and leaped off the gurney. In three strides, I was at the phone.
Ed and I had met at a karate studio three years earlier, at a time when I was determined to get myself together after a nasty divorce. I liked the dancelike movements of the martial arts, I wanted to bolster my self-confidence with self-defense, and I needed to get into shape after feeding my woes with cheese curls and old movies. Karate seemed a perfect solution. I was enthusiastic about this new venture but slightly nervous about showing up for the first class by myself. I had a feeling I'd be the oldest one in the class for beginners, but there was only one way to get started. I swallowed my pride, packed my crisp white uniform and belt into a duffel bag, and set out for a Tuesday night class for beginners, scheduled to start at eight o'clock.
The advanced students were involved in their class when I arrived. The walls echoed their kihaps as I dashed along the mirrored wall at the back of the studio and headed for the dressing room. So far, so good. The uniform was straightforward: white, starched, elastic-waist cotton pants and wraparound smocklike top. Barefoot and suited up, I went out into the studio looking for someone to help me tie the belt.
Partners were practicing their forms and self-defense moves, so I looked around for the instructor. Circulating among the students, critiquing their work and giving them pointers, was Ed, who looked over and caught my eye. He was working with a young black belt student. Ed wore a sweatband tied around his forehead and close-cropped dark hair. He was lean and all wrapped up in a bright white uniform that snapped with a starchy crispness as he moved. His uniform was tied at the waist with a black belt embroidered with his name and accented with two white stripes.
I approached him and bowed from the waist in deference as I had seen other students do. "Sir, could someone help me tie my belt? This is my first class." With a kind look devoid of all self-possession, Ed nodded to the young black belt student to help me.
When the beginner's class started, I was the only new student, so Ed gave me individual attention to set me on the right path. There was no rough or gruff response-just kindness.
I stuck with the karate classes for about a year and a half before I quit. At that time, Ed and I still only knew each other casually through class. But a year later, I ran into him at a convenience store. I remembered his manner as a karate instructor and the fondness I had harbored for him. I overcame my shyness and tapped on his truck window to say hi. To my surprise and secret delight, we chatted long enough to learn that each of us was single and wouldn't mind getting together to see a movie. We cautiously began navigating the waters of a new romance, convinced that commitment was not what either of us wanted-once burned, twice shy. And now, six months later, this.
"Hi, it's me. I'm at Women and Babies Hospital and just had the biopsy. It doesn't look good. The official results won't be ready until next week, but the technician suspects that it's cancer." Everything spilled out in one breath.
"Tell me which building you're in, and I'll be right there."
He left work on the spot and was in the waiting room when the biopsy trio told me I was free to go. Other than the unsolicited diagnosis given by the technician, the radiologist faxed a preliminary report to a surgeon, with whom I'd have an appointment before the day was out. As for the official results, I'd receive a call to set up an appointment with the radiologist. The emotion I'd refused to show in front of strangers came in a rush. I slouched onto Ed's shoulder and wept.
A technician led us to a private room off the waiting area and said, "I've been there. It'll be okay."
(Continues...)
Excerpted from If We Must Dance, Then I Will Leadby Jane Rudden Copyright © 2010 by Jane Rudden. Excerpted by permission.
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