The Lucky One

by Krystal Barter

  And, although I didn’t know it at the time, this is apparently a common response from people who find out they are BRCA1 mutation positive. I’ve met girls just like me who, after being told they’re up to 80 per cent likely to develop breast cancer, convince themselves that they’re dying of lung cancer or a brain tumour or heart disease. Something, anything; it doesn’t matter what. We’re convincing ourselves that we’re doomed to die of anything other than ‘old age’ and so get to work doing just that. The worst part is that this mentality isn’t something that can be ‘fixed’ in the same way that genetic predisposition can be managed or cancer risk can be reduced. Even after taking dramatic action to avoid cancer, like having your breasts removed, so often the fear of cancer and of dying remains. All that can be done is to try and keep it under control. At the time, though, I felt like I was going crazy.

  I guess it’s to my credit (or, more accurately, to the credit of my supportive family and friends) that I didn’t return to drugs or alcohol at this time. Because it could have been tempting. But since I had my beautiful babies it never crossed my mind. The strongest thing I ‘used’ now, though, was herbal tea and I became a chamomile junkie, downing three or more cups of tea per night in an effort to try and get some sleep. I refused to touch sleeping tablets, having left my pill-popping days behind me. But as such, and as a result of having two boys under the age of three, I wasn’t getting anywhere near the recommended eight hours of sleep in those days and this did nothing to help my mental state. Anyone who’s ever had sleeping problems (or who’s ever had young children—the two seem to be one and the same) knows the completely debilitating effect that a lack of sleep can have. It’s no wonder they use sleep deprivation as a form of torture treatment. You’d give away state secrets, too, just for a little golden slumber.

  So, between my lack of sleep and the anxious dread of my waking hours, between my invented diseases and my very real threat of cancer, those were dark days for me. And it wasn’t a quiet, menacing shadow of depression I suffered from, either. It was a wild, shrieking panic that woke me in the night; that stabbed red-hot pokers of fear into my eyes and blinded me from all rationality. It gripped me tight and fast and shook me till I was left cowering in a corner, begging to be left alone. And, in the end, the only relief I got came in the form of a most unlikely friendship, forged with a Jewish girl from the opposite side of the globe.

  CHAPTER 13

  Dear Lindsay,

  I am a young mum from Australia with a BRCA1 mutation and I’m emailing to say how inspired I am by your story and by your charity, Bright Pink.

  I feel like I have been searching for someone like you to chat to for a long time.

  Our family history is very similar. Just like you, my grandma and my great-grandma both had breast cancer. And just like you, I’ve watched my mum battle breast cancer, too. I’m in the midst of researching my options as a young woman who is likely to face breast cancer but there’s no charity like Bright Pink here in Australia to provide support or information.

  I understand you must be incredibly busy but I would love to ask you a few questions, if that’s okay?

  Many thanks,

  Krystal Barter

  Lindsay Avner was a fellow BRCA mutation carrier from Chicago, Illinois, and I first stumbled upon her during one of my late night Google-athons. Initially, I was drawn to Lindsay because our stories were so similar. As I said in my email to her, our great-grandmothers, grandmothers and mothers had all suffered breast cancer, plus Lindsay and I both tested positive to the BRCA gene mutation when we were 22 years old. Amazingly, Lindsay had then gone on to become the youngest patient in the United States to opt for a preventative double mastectomy (she was just 23 when she had the surgery). This, I reasoned, must be why this brown-haired, brown-eyed, all-American-girl with the toothpaste-ad smile seemed to fill my search engine whenever I entered ‘BRCA’ and ‘USA’.

  But there was more to her than that. As I sat at my computer, sipping chamomile tea like a junkie and intending to go to bed in just five more minutes, I gradually uncovered Lindsay Avner’s story. After she learned she was BRCA mutation positive, and faced with the prospect of a risk-reducing mastectomy, Lindsay discovered an absolute dearth of resources for young women in her situation. (By now my interest was piqued; this was a very familiar-sounding story.) As Lindsay explained it, there was plenty of guidance out there for women who had breast or ovarian cancer but nothing for girls like us who were ‘high-risk’ and who wanted to take a proactive approach to their health. So Lindsay created ‘Bright Pink’, an online community offering support and education to high-risk women. When I first learned about Lindsay in 2008, Bright Pink was in its infancy; now it’s one of the USA’s fastest-growing non-profit organisations. I was hooked. The moment I opened the Bright Pink homepage, with its explosion of hot pink and the glossy-haired ‘Team Bright Pink’—girls who looked more like glamorous homecoming queens than potential cancer victims—I felt like I had found a home.

  I immediately emailed Lindsay in what was to be, as they say in Casablanca, the beginning of a beautiful friendship.

  Lindsay and I just clicked. Over email, she shared her family history with me and explained how she’d arrived at the difficult decision to remove her breasts. I confessed to her that I wasn’t sure I would ever reach that point, but knowing there was someone else out there who had been in the same situation as me and who had shown the courage to undertake a preventative mastectomy, well, that gave me infinite inspiration. Nothing was off-limits during our conversations on cancer and Lindsay patiently waded through even my most bizarre questions, giving me advice that no doctor or specialist ever could.

  Do you miss your real boobs? Do you ever regret your mastectomy? How did you know you were making the right decision? How bad was the pain? What do your breast implants feel like to touch? Do you have any sensation in your boobs?

  Do guys really like them or are they put off by the thought of fake boobs on their own partner? Do you have much scarring? Did you get nipples with your breast reconstruction or did you not bother? The list was endless. Yet through her emails (and later the occasional Skype conversation) Lindsay managed to answer them all. (For the record: Any guy that has ogled the rack on a Playboy bunny at some point in his life is never going to turn down fake boobs in the bedroom. Oh, and there’s still plenty of sensation there, too. It’s your own skin holding the implants in place, after all.)

  Over the following months Lindsay became the sister I never had. She gave me unending support and encouragement, and just knowing what she’d achieved with Bright Pink helped me to find the positives that could be drawn from being high-risk. Lindsay changed my perception of my BRCA1 mutation status—changed my future, really—and while I was so thankful I stumbled across her and Bright Pink I was also sad that one of my closest confidantes on my BRCA journey had to come from the other side of the world.

  Where were all the Lindsays in Australia? Where was our Bright Pink community bringing together all the high-risk young women that must exist here? Whenever I bemoaned this fact to Lindsay, she gave me the same answer: go and create a local online community myself; that’s what she did. Sure, I would laugh and retaliate, is that before or after I look after two toddler boys? How on earth would I find the time to do it? Plus, I could hardly go about setting up a support network to help high-risk women navigate their journey when I was barely out of the starting blocks myself. Still, there was no denying that everyone in my position needed a Lindsay in their life. I just hoped that someone in Australia would come up with a Bright Pink equivalent here, and soon.

  In fact, I raised the idea at a National Breast Cancer Foundation breakfast event at Dee Why at this time. Mum and I were both speaking at the event and so I thought it was a good opportunity to test the water and see if there was much interest in starting an online community like Bright Pink in Sydney. While the response was overwhelmingly positive—someone at the event even offered for his company t
o provide free web support services and gave me his details so I could follow-up with him after the event—the underlying message was loud and clear: you do it. But I wasn’t able to. I couldn’t. Not with everything else that was going on right then.

  It was around the time of my newfound friendship with my ‘sister’, Lindsay, that I started to wonder if Riley and Jye would like one of their own. A sister, that is. It was no secret that Chris and I adored being parents and, despite the fact that Jye was less than twelve months old and that I wasn’t coping as well as I could be (with my high-risk cancer status), I was becoming increasingly obsessed with the idea of having another baby. And not just any baby—the perfect baby. Alongside ‘BRCA’, ‘preventative mastectomy’ and ‘Bright Pink’, one of the top searches on my computer was ‘PGD’ or pre-implantation genetic diagnosis. You see, in vitro fertilisation was so advanced by then that it was possible to screen embryos prior to implantation to check for all kinds of specific genetic diseases. Genetic diseases such as BRCA mutation carriers.

  I wanted to have a breast cancer-free baby.

  My family was, understandably, a little apprehensive about the idea.

  ‘Really? Another baby already?’ Chris asked tentatively, as he stood at the kitchen sink rinsing the Mount Kosciuszko of baby bottles.

  ‘A designer baby?’ my mum queried, although she didn’t press me further. If anyone understood the complex emotions tied up with our flawed family genetics, it was Mum.

  ‘Yes, a new baby!’ I enthused. ‘A little girl who will grow up never having to worry about her breasts.’

  The more I researched the idea, the more fanatical I became. ‘Did you know there are about one hundred babies born every year in Australia through PGD? The technology is amazing,’ I raved to Chris. ‘Imagine if one day they could completely eradicate the BRCA1 gene mutation just by screening embryos? The high-risk cancer community needs to know about this!’

  I was so excited about what I was learning that I got in contact with a friend of a friend, Kirsty, who was a producer on the Nine Network’s current affairs program 60 Minutes, to see if she would be interested in following our PGD journey and sharing it with her viewers. ‘It would be an Australian first,’ I explained to Kirsty over the phone. ‘No other couple in the country has successfully screened embryos to select a girl who is free of the BRCA1 gene fault before, so we’d be pioneers.’

  Unsurprisingly, Kirsty jumped at the story and we agreed to stay in close contact as I continued researching our PGD options on the long road to implantation.

  In my head, though, I was much further down the PGD path. I’d already dreamed us up a future where both our attempts at implantation and IVF were wildly successful and Chris and I were the proud parents of a healthy baby girl. I’d even gone as far as to name our daughter ‘Bonnie’, after Bonnie Blue in Gone with the Wind. My imaginary Bonnie, along with my real-life but geographically distant Lindsay, were the two bright spots in my life right then and I talked incessantly to one (Lindsay) about my plans for the other (Bonnie). The rest of the time, however, I was still constantly anxious and perpetually sleep-deprived (not to mention still self-diagnosing terminal illnesses at an alarming rate). It didn’t take a medical professional to see that I needed help and that’s exactly what Mum prescribed for me.

  ‘Krystal, I’ve booked you an appointment with a psychologist in North Sydney this morning,’ Mum announced as I opened my front door to her one morning in the spring of 2008. I gawped at her, a triangle of Vegemite toast hanging precariously out of my mouth. Behind me Jye screamed passionately from his bassinet while Riley was apparently dismantling my kitchen, one very loud stainless steel saucepan at a time, and Bob the Builder blared out of the television. I was still in my pyjamas.

  ‘A psychologist?’ I echoed. ‘You mean a shrink?’

  ‘A psychologist,’ Mum said. ‘Bronwyn. In Chatswood. She’s very good apparently.’ Mum thrust a piece of paper with a scrawled address on it into my hand as she bustled past me and into the house. ‘I’ll look after the boys!’ She called over her shoulder, as if I should go and jump in the car as I was.

  ‘But I don’t need a psychologist,’ I protested. ‘A housekeeper, maybe.’ I scooped up a pair of Riley’s Spiderman undies that were lying in the hallway with my toe. ‘But not a psychologist.’

  ‘Yes, you do,’ Mum corrected me. ‘You’re suffering anxiety. I’m suffering anxiety just looking at you. Now go and get in the shower, you’ve got to be in Chatswood in an hour.’

  My new shrink kept an immaculate but welcoming office. It was all burnt copper and caramel tones with the occasional, well-placed statement piece of artwork. Nothing too provocative but pieces that were interesting enough to stimulate conversation, I guess, if things ran a little dry. In all, it was just as you’d hope a psychologist’s office might look: warm, neutral, relaxing. There were no Spiderman undies littering the hallway.

  ‘Krystal, why don’t you start by telling me why you’re here today?’ Bronwyn said when I sat down and I was momentarily flummoxed by the simplicity of her question.

  Because I can’t sleep? Because I have two very small boys and I’m tired all the time? Because my mum marched into my house this morning and made me get in the car and drive here? None of those answers sounded worthy of requiring a shrink.

  Bronwyn smiled. ‘I understand you’ve got something of a complicated medical history? Would you rather we started there?’

  I nodded. This was familiar territory; I could do this patter in my sleep. ‘I’m BRCA1 mutation positive,’ I began, ‘which means I have an 80 per cent chance of developing breast cancer and at a much younger age than most women would. My mum had the disease and my nan had the disease. In fact more than 25 women in my family have had breast or ovarian cancer at some point so the apple’s not falling far from our family tree,’ I joked lamely.

  ‘I see,’ Bronwyn smiled again and nodded for me to continue. And so for the next 45 minutes we discussed my genetic cancer inheritance. How did I feel about it? Was I scared? Angry? What did it mean for my relationship with my family? With my kids? Was I considering preventative surgery? What were the factors for and against this in my mind? Was I scared of having a mastectomy because of my children? Was I scared not to have a mastectomy because of my children? Did I feel guilty about the possibility I may have passed this genetic mutation on to them?

  ‘Of course I do!’ I said when Bronwyn asked this. ‘More than anything I wish I could protect my kids from this.’

  Then I told Bronwyn of my plans for PGD and how I wanted to have a baby that I could offer a cancer-free existence.

  ‘So it’s important to you that your children are sheltered as much as possible from cancer?’ Bronwyn asked.

  ‘Well, yes.’ This seemed obvious to me. ‘It would kill me to see my kids go through what my mum and my nan have been through.’

  ‘I see. And what about you? What about what you’ve been through?’

  I thought back to my teenage years and to watching Mum slump to the floor in horror when she took that phone call and learned she had cancer; back to her surgeries and the time she collapsed; back to her vomiting and her weight loss and to the fear and the dread and the heartache and the waiting. I thought back to my drinking and my drug-taking and all the times I’d fought with my mum; back to the way that I hated her for being sick and hated her for being different and the way I hated her for having cancer when she should have been busy being my mum. I thought back to my nan with her eunuch-like chest and to her scars and her guilt and to her always-missing breasts. There was no way I was going to put Bonnie through that.

  ‘I’d do anything to protect my baby,’ I said quietly. ‘That’s why I want to screen my embryos for this gene mutation—to make sure she doesn’t have to live through that.’

  ‘And your boys,’ Bronwyn prompted gently. ‘You want to protect them from cancer, too?’

  I frowned and paused because I wasn’t quite sure what she wa
s getting at. Of course I wanted to protect Riley and Jye. The thought that I might have passed my gene fault on to them was devastating. Did she even need to ask? Besides, hadn’t I said that just a few moments ago? ‘Yes, I’d do anything to protect my boys from cancer. But there’s nothing I can do now—they’ve either got the BRCA1 gene mutation or they haven’t.’

  ‘True. But I’m not just talking about protecting them from their own cancer. There’s the possibility of you getting cancer in the future, too, and if you were to develop breast cancer then that could affect their lives just as much as if they had cancer themselves. More so, while they’re young and they need their mother. So by undergoing PGD and having another baby now—albeit a baby that’s sheltered from cancer—aren’t you putting off the chance to have preventative surgery and maybe the chance to protect your existing children from cancer? Your cancer.’

  I was floored.

  ‘And what about the fact that having PGD and IVF, while both are tremendous undertakings, are possibly more attractive options right now than having a risk-reducing mastectomy?’

  ‘Like a band-aid solution?’ I said and swallowed slowly.

  ‘That’s interesting you put it that way,’ Bronwyn replied. ‘I meant that I can see how the prospect of creating a beautiful new life might be infinitely more appealing than choosing to remove your breasts, but perhaps you’re on to something. A band-aid solution, you called it? Well, certainly by choosing PGD at the moment you’re making yourself unavailable to have breast surgery. You can hardly have a mastectomy when you’re pregnant, can you? Maybe you’re right to realise that’s why you’re attracted to the idea?’

  And that’s how Bronwyn helped me to see I was in denial. Without directly saying it, in fact by letting me come to the realisation myself, Bronwyn showed me how my reasons for wanting another baby had more to do with my fear of a mastectomy than any desire for another child so soon. It’s true that Chris and I hoped to have more children in the future, and I wasn’t prepared to entirely give up on the idea of a genetically screened embryo. But it was also true that I was hiding behind PGD so I didn’t have to face up to what I knew I needed to do: I needed to have my breasts removed.