Reconstructing hope: One woman’s journey after breast cancer
It’s 10 o’clock on a Sunday night and I’m sitting on my couch watching Mad Men, a glass of red wine at my elbow. In many ways, it’s a typically tranquil spring evening–a cat on my lap, the lull of the television in the background–except for one small detail.
I’m in boob jail.
That’s the term I use to describe the two gigantic domes I’ve got strapped onto my unnaturally flat chest. Prescribed to me by my physicians at the UW Medicine Plastic and Reconstructive Surgery Clinic, where I am a patient, the Brava device, as it is officially called, involves two domes made of hard plastic with a thick gelatinous rim that sticks to your skin like bare thighs on a hot vinyl car seat. There’s also tubing and a little motor and a blood pressure-type hand pump—all of which help you achieve the proper amount of suction.
For the past three and a half weeks, I’ve spent 10-12 hours a day with this bizarre contraption suctioned onto my chest. And I have many more hours and days and weeks of boob jail ahead. Why? Because as annoying and cumbersome and claustrophobic as the device is, it—and my UW Medicine health-care team—are helping me do something rather spectacular. They’re helping me grow new girls.
Diane Mapes attaches the Brava device—the first step to prepare her for breast reconstruction surgery
she is undergoing at UW Medicine.
Welcome to the cancer club
If you haven’t guessed already, I’m a breast cancer survivor. Diagnosed in February of 2011, I was one of 207,000-plus women in the U.S. to join the “BC club” that year (the dues are brutal, but the members are great—or so the joke goes). Currently, I’m participating in a clinical trial involving my two UW doctors. It’s a radical proposition: not reconstructing, but regenerating breasts by “tissue engineering,” which my doctors say is the wave of the future for breast cancer survivors like me.
My nipple-sparing double mastectomy took place two months after diagnosis, following a raft of blood tests, MRIs, doctor’s appointments, therapy sessions, anguishing conversations, long solitary runs and, oh yes, hours and hours of sobbing. But the fun was just beginning. After surgery, I went through three months of chemotherapy, then seven weeks of daily radiation on my left side, where the tumor was larger.
By November of 2011, I looked like a space alien—board flat and bald with half of my torso burned a deep lobster red. Not a good dating look.
Not that anyone—dates or otherwise—ever saw the real me. Within days of my surgery, I started wearing a pair of fleshy triangular prosthetics tucked first into my surgical camisole and later, a pocketed bra. I had one set of fake boobs for every day; another set, a flatter pair of “sports boobs,” I used for running and working out.
While other women rocked their bald heads during and after chemo, I went for the stealth approach. When my scalp starting tingling two weeks after my first infusion (the first sign of hair loss), I shaved my head and had a wig made out of my own locks. Except for runs (when I wore a baseball cap), I never left the house without it. During radiation, I continued to “pass” as a normal, healthy woman, wearing my V-necks backward so no one would see the burns.
“Fake it ’til you make it” became my mantra, along with a few other choice phrases that began with the letter “F.” Like thousands of other survivors, I was determined to not let cancer have the upper hand. Yes, it had taken my boobs, my hair, my strength, and a good bit of my dignity, but it wasn’t going to hold on to them forever. Little by little, I got my life back, wrenching each tiny triumph from cancer’s grip like a betrayed lover snatching back a house key.
In the spring of 2012, a year after my diagnosis, I ditched the wig and went “commando” with a micro pixie that soon grew into a tangled mop of chemo curls. A few months after that, I started boxing—the toughest workout I could find—in order to build my upper body strength and work off some of the blinding rage I still felt about my diagnosis.
Much like Samson, as my hair grew longer, I grew stronger. But it wasn’t enough to just be strong or to pass as a normal healthy female, albeit one with a much bigger “secret” in her bra than anything Victoria could conjure up. I’d come to appreciate—even love—my post-cancer body for the repeated beatings it had taken—surgery-wise, treatment-wise, even boxing-wise.
But there wasn’t a day that I didn’t look in the mirror and see not what was there, but what was missing. There wasn’t a day that I didn’t ache for what breast cancer had stolen from me. I wanted my girls back.
You are entering a reconstruction zone
Unfortunately, breasts don’t grow back like hair or eyebrows. Instead, you have to build them out of other body parts (or foreign bits and pieces) via a complicated series of surgeries known as reconstruction. I’d talked to lots of BC buddies about their “recon” and knew a good plastic surgeon could create beautiful, natural-looking breasts using either tissue expanders (TEs) and implants or one of the various “flap” methods, where borrowed tissue, blood vessels and/or muscle from another part of your body are used to create a breast mound.
But I also knew what was involved with this kind of recon: major surgery, major recovery time and (particularly in the case of stomach flaps), major scars. I’d already been told by two plastic surgeons that my radiated left side would most likely require a flap, borrowing muscle from either my back (there goes that left hook) or my stomach (goodbye, core). I could have breasts, yes, but at a cost. As one girlfriend, who’d had a stomach flap on one side and a TE/implant on the other, put it: “I’ve got boobs now, but my body looks like a patchwork quilt.” I missed my girls, I mourned my girls and I definitely wanted my girls back. But I didn’t want my body carved up like a Thanksgiving turkey to do it. I also didn’t want to lose something essential and healthy—like a stomach or back muscle—just to gain breasts. Surely, there had to be a better way.
For months, I mulled over my options, letting my skin heal from radiation (the longer you wait post-rads, the better). For months, I read and researched and talked to other survivors about the various methods available. And then one day I stumbled onto something new, an oddball contraption that looked like something you might see on the cover—or the back pages—of a vintage issue of Amazing Stories.
The Brunhilda bra
The contraption was called the Brava and it had been developed by Dr. Roger Khouri, a Miami plastic surgeon with 25 years of breast reconstruction experience. The Brava “domes” were huge—we’re talking Dolly Parton or Wagner opera huge—but according to the website and dozens of patient testimonials, they offered a much less invasive way to build breasts. Instead of surgically moving chunks of tissue from one part of the body to another or stuffing a temporary inflatable “tire” behind your chest wall and then swapping it out for an implant, the domes acted as external tissue expanders, pulling on the skin from the outside and stimulating the growth of blood vessels or, as Dr. Khouri called it, a “vascular scaffolding.” A patient would wear the domes for 10-12 hours a day, slowly creating this scaffolding (and a bit of edema). Then after three or four weeks, the patient would have fat liposuctioned from the spots where they had it and injected into the spots where they didn’t.
New boobs and thin thighs? I thought as I read. Where do I sign up? But it wasn’t just the body-sculpting bonus that appealed to me. Instead of scalpels, the doctors used needles; instead of hours under anesthesia, fat transfer was a two-hour outpatient procedure. No 12-hour surgeries, no six weeks’ recovery time and no stem-to-stern belly scars. Best of all, Dr. Khouri claimed his device not only stimulated the growth of blood vessels, but nerves, as well. His patients, he said, had sensation in their new breasts. As someone who’d struggled with a completely numb “dead zone” every day for two years—the return of sensation was like the holy grail. The only problem: Dr. Khouri was in Miami and I was in Seattle.
Undeterred, I continued to dig around for information, talking to patients and plastic surgeons and even Dr. Khouri himself, who referred to his system not as reconstruction but breast regeneration. “This is tissue engineering,” he told me. “We are able to regenerate breasts by pulling on the tissue from the outside with simple mechanical force.
“The Brava creates the scaffolding, then you fill it with fat cells.”
Dr. Khouri also told me that about 100 plastic surgeons across the country were performing this cutting-edge method of reconstruction as part of a clinical trial—including two doctors at the UW Medicine Plastic and Reconstructive Surgery Clinic.
Diane meets with UW Medicine plastic surgeon Dr. Hakim Said, who is one of few surgeons taking part in a clinical trial that uses an ingenious method to regenerate breasts. Said calls it “the wave of the future.”
Brava bravado
Several weeks later, I was sitting in an examination room with Dr. Hakim Said, a UW Medicine plastic surgeon who, along with colleague Dr. Peter Neligan, had started offering Brava/fat transfer as part of their breast reconstruction arsenal. As usual, I’d brought my reporter’s notebook and about four dozen questions. How many patients had he worked on? What were the results? How many fat transfer procedures would I need to get my B-girls back? And would I really get sensation again or was that wishful thinking? Incredibly, he sat with me for more than an hour, answering every one.
Dr. Neligan, as it turned out, had worked on 15 Brava/fat transfer patients in the past two years, but I would be one of Dr. Said’s first Brava patients. That didn’t mean he was new to the fat-transfer game, of course; he’d been using it to finesse traditionally reconstructed breasts for years. As for how long it would take to get my old girls back, that was up for debate, he said. I might need three procedures; I might need more. And sensation? Dr. Said told me we’d have to “wait and see.”
My main question, of course, was whether I even qualified for the procedure considering half my chest had been blasted by radiation. My plastic surgeon was dubious, too, until he examined me. “You’re a terrific candidate,” he told me after looking at my left side. “Your skin has healed very well.” I knew that radiation changed the nature of a person’s skin so I’d done everything I could to keep “Lefty” pliable: massage, castor oil rubdowns, I’d even taped back the folds of skin after my mastectomy so they wouldn’t harden in place. According to Dr. Said, all of that work had paid off: the skin on the left side was definitely capable of being stretched. The only question left, then, was whether I’d be able to handle the “Brunhilda bra.”
“There’s a lot of work associated with the Brava device,” Dr. Said told me, referring to the daily shifts as “onerous.” “Nothing comes without a cost and unfortunately, you’re trading all the ICU and surgical recovery time by putting in your due diligence at home wearing this device.” I assured him I’d be able to put in the necessary hours, shrugging off his warnings about skin rashes and back pain and bruised ribs and lack of sleep. I’m a breast cancer survivor, I told him. And I box. I think I can handle this. “That’s great,” Dr. Said told me, handing over a sheath of instructions. “Because I think this is definitely the wave of the future.”
Second thoughts
A few weeks later, when my domes arrived, I started to wonder if my doctor’s comment about this being the “wave of the future” was tongue in cheek. My new boob-o-matic machine looked like something out of an old Jetsons cartoon. And it was, as the kids say, hella complicated.
There were the giant hard plastic domes with their sticky rims. There was tubing and a little motor with an alarm that went off if you lost your “seal.” There were special anti-sting wipes, special soaps, special moisturizing lotions and special cleaning techniques for both the domes and the little motor. And to make it “easy,” there were about 40 pages of instructions.
I spent two hours on the phone with a Brava “coach” the next day, a patient soul who managed to talk me into the get-up, assuring me the whole time that it would soon all become routine. I managed to keep the domes on for three hours that day before my cat dislodged one of the tubes and first, the motor—and then the alarm—went off. Then I freaked, desperately prying the sticky suction cups off my chest like Raquel Welch battling those suffocating antibodies in Fantastic Voyage.
Staring down at the domes and the mountain of paperwork and products they came with, I suddenly became angry all over again about the cancer and what it had put me through. What it continued to put me through. I also began to question my sanity. I’d told my friends, my family, my doctors, and myself that this was the type of reconstruction that I wanted. But what was I getting myself into? Suddenly, chemo and radiation paled in comparison to the torturous task of strapping these monstrosities onto my chest every day for the weeks and months it would take to grow new girls. Would I still be able to sleep? To box? To write? Would I be able to deal with the sniggers and stares when I went out in public wearing the thing? What about the recovery period following the fat-transfer procedure? One of the patients I’d talked to described feeling as if she’s been “hit by a truck” after her first surgery. Would I be able to handle it?
My body had been violated in a very personal, very permanent way. A violation that I wanted to rectify.
I went for a run as I often did when cancer and its demons got to me, passing billboards of topless Hawaiian women, joggers with cleavage popping out of their sports bras. In bed that night, I stared up at the light fixture above me. Even the ceiling in my bedroom had a boob.
In the two years since I’d been diagnosed, I’d talked to dozens, if not hundreds, of breast cancer survivors. Some saw no reason to go through more surgery, more pain just to get their boobs back. They’d nursed their kids; their husbands didn’t care. What was the point? But I wasn’t one of those women. For me, losing my breasts was devastating. It wasn’t just about my singlehood or my sexuality, although that certainly played into it. It was more about aesthetics and loss of control and the fact that my body had been violated in a very personal, very permanent way. A violation that I wanted to rectify.
Plus I had always just really liked my breasts. They were pretty, they were feminine, they were responsive, and most of all, they were a part of me. Losing them had been like losing two very dear friends. I’d come a long way since the days when I’d actually contemplated running away to Mexico rather than going through with the double mastectomy. (“She died with her boobs on,” I figured my epitaph would read.) But I still teared up occasionally while looking at jogging bras or saw a friend’s soft sloping cleavage staring at me from across the dinner table.
By day, it was easy to forget that I didn’t have boobs, thanks to a good set of prosthetics and a finely honed resilience. But at night, when the pocketed bra came off, I saw a scarred battlefield where cancer had won. I saw a fighter and a survivor, too, and there was comfort, even pride, in that. But my fight wasn’t quite over yet. Just as in boxing, I needed to go the distance.
Eyes on the prize
My first week with the Brava was rough, I’ll be honest. I couldn’t get the thing to suction onto my chest, I had trouble attaching the tubes to the domes. I freaked out every time the little motor came on, signaling a broken seal. And then there was the little matter of sleep.
Despite my best laid plans, I couldn’t sleep with those puppies strapped to my chest. They dug into my armpits, bumped against my ribs and the little motor would go off every time I tried to get comfortable. After four sleepless nights, I was a wreck, sobbing on the phone to friends and relatives and other BC survivors who’d spent time “under the dome.”
“You’ve got to keep your eyes on the prize,” a friend who’d gone through the same procedure with Dr. Frank Isik at the Polyclinic, told me repeatedly. “There is definitely a steep learning curve but you’ll get it.” Joan Seda, a retired nurse and the first patient to go through the procedure at the UW Medicine clinic, was more pragmatic. “You need to call your primary care doctor and tell them what you’re going through,” she said. “You’re sleepless because of the anxiety. You need help.”
She was right. Once I got the anxiety under control, I was able to sleep and once I was able to sleep, everything got easier. Within days, I started wearing black camisoles and loose T-shirts over the Brava, trying to fold it into my life, my look. Soon after that, I started taking pictures of myself and my new 44EEEs and sending them to my big sister, who wrote back asking if my Brava device made sounds like the milk machines back on the dairy farm where we used to play as kids.
I came up with a schedule that allowed me to work and box and run and socialize and even date until 9 every night; after that, I was in boob jail until 9 the next morning. I bought flat pillows to go under my arms and my knees so my back wouldn’t ache at night. I invited friends over so I wouldn’t feel so isolated, dear sweet friends who told me lovely lies about how the domes looked “perfectly natural” in the right light. I practiced self-talk, reminding myself of the cardinal rule of cancer: you have to bend it to your life, you have to make it your bitch, not the other way around.
Most of all, I gave myself permission to come “unglued” any time the domes got too painful or claustrophobic. I also gave myself permission to quit entirely if I found I just couldn’t handle it. But after a couple of weeks, a strange thing happened. I discovered I could handle it. Especially when I took off the device each morning and saw a pair of little puffs staring back at me in the mirror. There were welts and mottled rings of inflamed skin, as well. But all I could see were my tiny breastettes. At 54, I was going through puberty all over again.
Getting my own back
And so I sit, sipping my wine on a lazy Sunday night, giving buxom Christina Hendricks from Mad Men a pretty good run for her money. This time, I’m strapped into boob jail not just for the night but for the next three days. According to my detailed instructions, I have to wear the domes nonstop until I climb onto the operating table Wednesday morning. That’s when Dr. Said will take them off and start filling those puffs on my chest with tiny droplets of fat from the sandiest portions of my hourglass figure.
Am I nervous? You bet. Although I’ve talked to half a dozen women who’ve successfully gone through this process and seen hundreds of incredible “after” pics, I’m worried that something will go awry. That the fat will entirely dissipate (some will, of course) or I’ll get an infection (always a possibility with surgery) or I’ll discover I was wearing the device wrong and have to go back to the drawing board.
But I’m also excited. Within days, I’ll be seeing my old friends again, even though they’ll be small and subdued and bruised from the injections. Within days, I’ll be a few steps further down that long convoluted road to cancer recovery (knock wood). Within days, I’ll be participating in something bigger than just my breast reconstruction; I’ll be helping pave the way for other women who, like me, would rather try something new—even something that looks like it’s out of the pages of a science fiction magazine—than sacrifice more of their bodies to this lousy disease.
This type of reconstruction or tissue engineering or organ regeneration or whatever you want to call it may not be for everybody. It may not even be for me. But you have to admit, it makes for an amazing story. And I’m happy to say I’m still here to tell it.