The Lucky One

by Krystal Barter

  ‘It’s a big ask,’ she said when I’d finished presenting my business plan to her. ‘You’re a young mum, with limited time and resources, and you’re operating from a knowledge base built up strictly from your own clinic appointments as a BRCA patient, is that right?’

  I blushed. When she put it like that, you wouldn’t back Pink Hope in a pink fit.

  ‘I guess I’m just a little concerned,’ she went on. ‘I agree there’s a need for this sort of community—a huge need. And I hate to be negative, especially when I can see how much work you’ve already put into this. But I’m just not convinced this is a task for one single person.’

  Yet, despite her misgivings, Professor Kirk became an invaluable member of the Pink Hope team from day one. She gave me advice on speaking about familial cancer in public forums and helped me make sure I was using any medical terminology correctly. It was Professor Kirk who taught me to say ‘B-R-C-A one’ and never ‘brac one’, when talking about my gene fault, and to talk about having a ‘risk-reducing’ and not a ‘prophylactic’ mastectomy. She was generous with her time and liberal with her expertise and the next time I saw Professor Kirk, at a familial cancer conference in Kingscliff, on the far north coast of New South Wales, we were both thrilled that Pink Hope had proved her initial fears wrong.

  ‘Krystal!’ she called out when she spotted me standing nervously next to the stage, preparing to present to the assembled conference. The KConFab Conference (hosted by the Kathleen Cuningham Foundation Consortium for research into familial breast cancer) is an annual event and the crowd includes geneticists, clinicians, surgeons, genetic counsellors, researchers and pathologists from all over Australia and New Zealand. Telling these people anything new about hereditary cancer is no mean feat, especially for a girl from the Northern Beaches who never got further than six weeks into a university degree. I was daunted, to say the least. So what Professor Kirk said to me that day was a shot in the arm for my confidence at exactly the right moment.

  ‘You did it!’ she exclaimed, pointing to the hot pink folder I was clutching. The words ‘Pink Hope’ and a raft of purple butterflies were emblazoned on the cover. ‘I don’t know how you did it, but you did it! You actually got Pink Hope off the ground!’ she said, then she turned briefly to greet Dr Kathy Tucker, clinical geneticist, who was standing with me and who Professor Kirk obviously recognised as a very familiar face in the Sydney hereditary cancer network, having worked closely together.

  ‘You know, Kathy, when I first heard what Krystal was planning with Pink Hope, I didn’t dare believe that one woman could pull it off,’ Professor Kirk said. ‘I’m not even sure you believed it, Krystal!’ she added, turning to me and laughing. Then she took my hand and looked me square in the face: ‘How very wrong I was, Krystal. Congratulations. What an incredible resource you’ve created in Pink Hope.’

  Coming from such a highly regarded medical expert in her field, and someone I personally looked up to so much, this was the single proudest moment in my career.

  The next time I saw Professor Kirk it was at the Cancer Australia Breast Cancer Breakfast in October 2011, when the theme was familial cancer (a theme I had been petitioning them for three years to include). The two of us were presenting together—Professor Kirk as the medical expert and me as the patient—and I was far less nervous this time than I had been at the KConFab Conference in 2009. I spoke about the need for vigilance among high-risk women, and about the journey towards choosing my own preventative mastectomy, while the assembled guests tucked into their continental breakfasts. A few people, I noticed, looked up from their eggs and their orange juice and nodded along; one or two smiled encouragingly as I talked. Still, I could never have predicted the effect my speech may have been having. Finally, it seemed, people were beginning to understand the importance of Pink Hope.

  Then, when Professor Kirk took to the microphone after me, what she said was astonishing.

  ‘I had planned to talk to you all today about new research into the genetic mutations affecting the onset of familial cancer,’ she began. Then she paused and half-turned towards me. ‘But I think you’ll all agree that speaking to you now, after we’ve just heard from Krystal, is one tough act to follow. I mean, didn’t she just bring the house down?’ Professor Kirk went on and I could feel my face heating up to a colour that must surely be matching my folder.

  ‘What Krystal just gave us was a fantastically powerful and hopeful message. So many of the patients that we see each day have spent years trying to run away from the fact they have a BRCA1 or BRCA2 gene fault. Krystal’s message is that “knowledge is power”, and we’d all do well to pass that message on to our patients and their families. Because there’s so much you can do these days to reduce your risk …’

  It was at this moment that Pink Hope finally felt real.

  Pink Hope now has 50 000 people engaged and, at peak times, our website has received more than one million hits. We have a legion of dedicated celebrity supporters, including Whitney Port, Karl Stefanovic, Esther Anderson, Georgie Gardner, Brooke Satchwell and Laura Csortan. And since I first founded Pink Hope five years ago I’ve been recognised with several awards. (In 2012, I was a finalist for the Young Australian of the Year 2nd, the NSW Woman of the Year and I was an Australia Day Ambassador. I’ve been a finalist for the 2012 Instyle Audi Women of Style Awards, 2012 Madison Inspirational Woman, 2011 Harpers Bazaar Woman of Influence and 2010 Warringah Young Citizen of the Year.) I’ve met countless celebrities and made more media appearances than I can remember, plus the footage 60 Minutes shot of my surgery is now being used as a resource in family cancer clinics Australia-wide.

  And yet I would give this all up in a heartbeat if it meant sustainable funding for Pink Hope.

  The publicity, the celebrities, the need for building a media profile—these things are all necessary for what we do but they mean nothing without the women of Pink Hope. Our ambassadors, the survivors, the ‘previvors’, and all their family and friends rallying around them: this is the true core of Pink Hope. Pink Hope may have started from a modest idea—to establish a community so high-risk families aren’t alone—but one day I hope that an entire generation of women will feel supported and confident enough to make the life-changing decisions that come along with being high-risk. Every day I’m inspired by another Pink Hoper’s remarkable story (truly mine pales in comparison, and I feel stupid whenever someone calls me ‘brave’ or ‘courageous’). These women are the brave, courageous ones. Women like Rachel Rogan and Tracey Ryan. They’re the reason I can never give up hope.

  The other reason is Bonnie.

  CHAPTER 19

  Bonnie Rose, my precious, beautiful and long-desired daughter, was born in the winter of 2010. On the day Bonnie was born—an unseasonally balmy June day—it was almost twenty months to the day since I’d undergone my mastectomy and I’m not sure what was more amazing: that Chris and I were finally bringing our gorgeous baby girl into the world, or that I was still here myself. After all, if I’d pushed ahead with PGD and IVF back when I’d wanted to in 2008, then I would have necessarily put off my mastectomy, and the pre-cancerous changes detected in my breast at the time may well have developed into full-blown cancer.

  Instead, here I was: new boobs and no boob cancer and blissfully bottle-feeding baby Bonnie. It seemed almost too good to be true. I may have lost my breasts but I gained my life. And my daughter’s.

  Only, things hadn’t gone quite according to plan along the way to reaching this point. Not by a long shot.

  You might say that things started to go awry around the time when, less than five months after undergoing my mastectomy, I was back putting my body through the wringer with our first attempt at IVF. Then again, you might say it was earlier than that. Back, perhaps, when—only one month after I completed my breast implant surgery—I woke up and decided it was time to start trying to conceive a BRCA1-negative baby. But in truth? In truth, it began even earlier than that, back when I was sitting in the
inoffensively neutral office of psychologist Doctor Bronwyn Butler last year, trying to convince myself and Dr Butler that I was okay with my decision not to press on with IVF just then. Because I wasn’t. I wasn’t even close to okay with it. I just couldn’t let go of the idea of a genetically screened embryo.

  One of the main reasons for this was the fact that I was acutely aware I could have ovarian cancer looming in my not too distant future. This might sound dramatic, but women who carry a BRCA gene mutation face a 40 to 60 per cent risk of developing ovarian cancer (as Mum very nearly demonstrated). And, not only is 40 to 60 per cent far too high for my liking, ovarian cancer is a beast of a thing, considered by most medical experts as far deadlier than breast cancer because it’s so damn difficult to detect. (In many cases, by the time ovarian cancer is detected, it’s often too far progressed to be curable.) And while removing your breasts does seem to reduce the incidence of ovarian cancer (by up to 80 per cent, some studies suggest), it was recommended to me that I undergo a prophylactic oophorectomy (or complete removal of my ovaries) within the next five to ten years. Now, an oophorectomy is not something to be entered into lightly as it would mean I was no longer able to have children. But all the best medical advice in my personal case was: that I’d be mad not to do it, and soon. And so I felt something of a sense of urgency when it came to having more children.

  As a consequence, when we started down the PGD path for the second time in less than six months, yet again it was probably too soon.

  ‘My god, Krystal, you look terrible! You’re yellow!’ Kirsty bustled into the kitchen with her 60 Minutes camera crew in tow. She assessed me in a glance, and then quickly tried to retract what she’d just said: ‘But what would I know? I’m a television producer, not a doctor. I’m sure you’re doing just great, babe. Are you doing great, babe?’ She plonked herself down at the kitchen table. Her crew jostled for space next to a fridge that was as chaotic outside as in. Electricity bills and council notices and letters from the P&C shouted over one another to be heard.

  ‘Is there a little mini-Krystal cooking in there yet?’ Kirsty asked, leaning over and patting my stomach encouragingly.

  ‘Ugh, I hope so,’ I grunted, flicking on the kettle and then settling down at the table with her. ‘Because I’d hate to feel this bad for no reason.’

  Kirsty and her crew were faithfully back following the story of our journey through PGD and IVF. After a false start last time (admittedly, a false start where we offered Kirsty a tale of genetic screening and instead gave her the ratings-winning story of my mastectomy and my unexpected brush with cancer), we were all hoping this story would have a happier ending.

  ‘So you’re one month in to IVF …’

  ‘I’m one month in,’ I confirmed, trying to ignore the cameras that were capturing my every word.

  ‘And?’

  ‘And it’s hell,’ I groaned. ‘Seriously, Kirsty, I don’t know how women do this. I’ve been through childbirth, I’ve had my boobs lopped off, but the pain and the discomfort and the emotional upheaval of IVF is hell.’

  ‘Hence you look yellow,’ Kirsty said, not unkindly.

  ‘Hence I look yellow.’

  But resembling the Bananas in Pyjamas was the least of my worries. After just one cycle of IVF I was bloated and sore and crazy with hormones and I really hoped things downstairs were working because I wasn’t sure I could do this again any time soon. Since Chris and I had decided to go ahead with PGD and IVF, our lives had been turned upside down. We approached Sydney IVF (now Genea) about the possibility of screening our embryos for a BRCA1-negative baby girl in February (less than four weeks after my implant surgery). By March we had started our first PGD cycle and now six months later (and more than $15 000 poorer) we were about to learn whether our attempt had been successful. I stood and walked to the bench, where I started making Kirsty’s coffee.

  ‘If it’s okay with you,’ Kirsty said, ‘what I’d like to do today is just get some background for our story, while the crew get some footage of you and your family at home. Then one of our journalists, Tara Brown probably, should be in touch next week about setting up an interview time with you and Chris.’

  I nodded. The smell of the coffee was making me nauseous. Pregnancy? Morning sickness? I hoped like hell it wasn’t just the IVF drugs talking.

  ‘So why don’t we start with the reasons for your decision,’ said Kirsty, pulling out her laptop. ‘Why did you and Chris decide to try PGD?’

  ‘Oh, that’s easy,’ I replied. ‘After everything that had happened to our family, after all the cancer and the death and the heartbreak and the loss, I wanted to do whatever I could to cut us a break.’ Kirsty nodded encouragingly. ‘And if that meant conceiving a BRCA1-negative child, a new generation free from breast cancer, then I was prepared to try,’ I added.

  ‘Of course. And have doctors given you any indication of your chances of success?’

  ‘They’re good,’ I said confidently. ‘Using PGD, doctors have already found an embryo that doesn’t carry the gene fault and this is the embryo that’s implanted in me right now. And because Chris and I obviously have no issues with fertility …’ Kirsty laughed. She knew I accidentally fell pregnant with Riley when I was just 21. ‘Then it’s more than likely that our embryo will take first time. In fact, nearly 40 per cent of all patients going through PGD are successful first time around because there are generally no fertility problems to overcome.’

  ‘So you’re sitting round waiting to see if you’re up the duff?’

  Now it was my turn to laugh. ‘Pretty much. I had a blood test at the beginning of the week to check if I’m pregnant and I should hear back from the clinic with the results in the next day or two.’

  ‘And so, with any luck, you and Chris will be one of the first Australian couples to use PGD to screen for a baby girl that’s BRCA negative?’ Here, the camera zoomed in.

  ‘That’s right. Our Bonnie will be one of the first girls ever in Australia to have been genetically chosen to live a life without BRCA/hereditary breast cancer.’

  Or so we thought. When the phone rang later that afternoon, as Mum and Kirsty and I sat around the kitchen table talking locations for next week’s shoot, it was Sydney IVF calling to tell me that the result of my blood test had been received and that ‘zero’ pregnancy hormone had been detected. I wasn’t pregnant. Our attempt at in vitro fertilisation had failed. I was devastated.

  ‘I … I don’t understand,’ I said, staggered. ‘How could the embryo not take?’ I never expected not to conceive. Chris and I had discussed the possibility that the screening process may not be successful, or that the embryo may not survive the transfer. (However, we knew that it had—IVF Sydney had already confirmed that.) But we’d never considered for one minute that I may not fall pregnant. It was a cruel and complete shock.

  The following few weeks were a blur. I was more disappointed than I could ever have imagined. So, too, was Chris, and for the first time that I could ever remember, Chris struggled to summon his usual steely optimism. We were brittle and fragile and we mourned our little girl who never was. (Plus, we were acutely aware that we’d just spent $15 000 and not gained a thing and that this had burned through our savings at a frightening rate.) At the time, I was still wild with IVF hormones and my cycle was completely out of whack so, with this in mind, plus our dwindling finances, Chris and I decided to take a month off from IVF while we tried to piece ourselves back together.

  And that’s when I fell pregnant.

  During our month off IVF, Chris and I had unprotected sex one Sunday afternoon after we’d returned home from taking the boys to my parents. It was the first time we’d had sex since we’d learned the IVF had failed and—who knows if it was something to do with our shared sorrow?—but we fell blissfully, thankfully, pregnant.

  Of course, it wasn’t lost on me and Chris that—having just spent $15 000, plus a hell of a lot more by way of blood, sweat and tears, all trying to conceive a baby thro
ugh IVF—we’d gone and gotten pregnant the old-fashioned way. Fun, free and, as was our style, accidental. But nor did it escape us that, despite all our efforts to conceive a baby girl that didn’t carry our family’s gene fault, this unborn child had the same 50 per cent chance as Riley and Jye did of being BRCA1 mutation positive. And yet it was impossible to be anything but elated. After our IVF disappointment, after all the pain of the previous year, to be pregnant again was the most wonderful thing our family could possibly have hoped for.

  On the day of our eighteen-week ultrasound, when we elected to find out the gender of our baby, I immediately burst into tears at the result.

  ‘A girl?’ I exclaimed, as I smiled and I sobbed. After all that we’d tried to do to spare this baby from breast cancer, I couldn’t believe we were having a little girl.

  ‘Krystal! It’s okay,’ soothed Chris, squeezing my hand as I lay on the ultrasound bed, my swollen belly smeared with cold jelly. ‘It’ll be alright, I promise.’

  ‘Alright?’ I managed through my tears. ‘It’s a little girl! This is more than alright! It’s the most wonderful thing I could ever have wished for!’

  And it was. Despite the risks, despite the pain that might lie in the future, to be pregnant with a little girl was everything I had dreamed of. Together Chris and I stared at the wriggling, squirming, black and white image on the screen in front of us in wonder. Finally, we had our Bonnie Rose.

  As her parents, Chris and I made the decision not to have Bonnie tested for the BRCA gene in utero (using pre-natal genetic diagnosis). Nor will we have her tested during her childhood. If Bonnie wants to find out about her BRCA status, then she can choose to do so when she’s a consenting adult; it’s not something either Chris or I will force on her. It’s her body and her choice and we will support her, whatever she decides. Of course, we will always be there to talk to Bonnie about her family genetics, the topic will never be taboo and we’ll offer her all the knowledge and the information that we have. Moreover, we’ll encourage her to be proactive about her health and to seriously consider getting a gene test when she thinks she’s ready. But it’s not something we feel we can decide for her. And if Bonnie does turn out to be BRCA1 positive and she does have to undergo the same surgery as me, well, our family will be there every step of the way.