Genetic Mutations and Summer Vacations

carmenguitar

Auntie Carmen, at Christmas, serenading Noah

What a ridiculous backdrop my life plays out against sometimes. In the midst of launching new businesses, seeking out new schools, dreaming of camping in various Niagara utopias, celebrating birthdays and watching my beautiful children become infused with the electric energy of spring, I’ve been working on a project that has made my heart so heavy, I find myself waking in a cold sweat each night.

For those of you who have been with me here from the start, you will know how many loved ones I have lost to cancer. For all of you, I will tell you that the people I knew intimately and lost were only the tip of my family’s dark iceberg. At my last physical, my doctor recommended I get screened for the BRCA1 and BRCA2 genetic mutations. Just over a week ago I sealed the envelope containing my family medical history and sent it off to Princess Margaret hospital.

And now I wait.

Remember when Angelina announced her double mastectomy and the world suddenly knew that you could be screened for a genetic mutation that is almost always linked to certain types of cancer? Well, that’s what I ‘m talking about here. In families where there are multiple occurrences of certain types of cancer (breast, ovarian, and colo/rectal cancers) geneticists look for a mutation in the BRCA1 or BRCA2 genes. If this mutation exits, the odds of that person developing cancer are STAGGERING.  Here are some details from the cancer.gov fact sheet on the BRCA1 and 2 mutations:

A woman’s lifetime risk of developing breast and/or ovarian cancer is greatly increased if she inherits a harmful mutation in BRCA1 or BRCA2.

Breast cancer: About 12 percent of women in the general population will develop breast cancer sometime during their lives . By contrast, according to the most recent estimates, 55 to 65 percent of women who inherit a harmful BRCA1 mutation and around 45 percent of women who inherit a harmful BRCA2 mutation will develop breast cancer by age 70 years.

Ovarian cancer: About 1.4 percent of women in the general population will develop ovarian cancer sometime during their lives. By contrast, according to the most recent estimates, 39 percent of women who inherit a harmful BRCA1 mutation and 11 to 17 percent of women who inherit a harmful BRCA2 mutation will develop ovarian cancer by age 70 years.

You can read the entire fact sheet here.

What will I do if Princess Margaret Hospital thinks I’m a candidate for testing? I will get tested, of course. And then what? How do you not put the cart before the horse in situations like these? I know if I test positive, there isn’t much I won’t do to increase my chances of good health. Watching so many people die from cancer has been one of the aspects of my life that has most shaped the way I live. I realize I have very little say in such matters, but I don’t want to die before I’ve had a chance to see my children grown, or before I’ve had the chance to hold my grand babies. If information and knowledge give me any kind of power over my own health, I’m going to take advantage. Meanwhile, I’m fortunate enough to be so busy chasing my little people, I don’t have to dwell on the possibilities each moment.

I could die tomorrow. Any of us could. That’s a fact, isn’t it? What do we do but try to immerse ourselves fully in each little moment we get today?

So, I’m planning day trips, and summer excursions. I’m taking even deeper breaths from the sweaty head of my just-from-a-nap little boy. I’m dreaming of lazy, warm afternoons with good food and good friends, and I’m imagining the musical laughter and grace of three amazing Japanese gals who will be our beloved guests in August. Those things are real, and tangible. I can count on them, and they are precious jewels that glitter at the bottom of an often murky lake.

I love you guys, and I’ll be sure to keep you posted.

Time Away

cheerfulsnow

November is over. I’m very happy about that because it’s my least favourite month, and this year November was particularly dark. In fact, autumn in general has been coloured with so much loss and sorrow this year that I’m beginning to wonder if there is something about the shifting seasons that compels death not only in nature, but also in us inhabitants of mother earth.

You’ll have noticed that it’s been ages since I’ve written. I apologize if the posts you may have looked forward to haven’t been there, but I needed to withdraw and turn myself inside out a little bit. Since late August I’ve witnessed a remarkable amount of sorrow, loss, and grief and rather than sit before a computer screen, I’ve been compelled to spend more time with my children and my partners. I’ve just started to really miss writing here, and so my heart seems to be telling me that it’s time to return to writing.

Our dear friends lost their baby at seven months pregnant. I suppose I was foolish to think that such a shocking, staggering loss could never touch my inner circle. We have no such control over these things, do we? My heart was utterly broken by this, and these brave parents have been nothing but inspiring in the way they are moving through this life-changing event.

Those of you with pets will know that saying goodbye to a companion animal can be just as difficult as losing a human who you love and care for. My dear friends lost their sweet and noble dog, who had been their small creature to care for and nurture for years and years – I feel like this wonderful dog has been in their family all the time I’ve known them. They gave her such a wonderful life, and they adored her so completely.

My dear aunt Carmen, my fairy godmother, the cool, hip aunt that I idolized in my youth reached the end of her journey through cancer. She is my third aunt to die from this stupid disease and my mother’s fourth sibling to die from cancer. She too was incredibly brave, and positive, and like the dear friends mentioned above she was somehow able to find some light in such a dark turn of fate. My daughters and my Sarah and I sang at her exquisite memorial, at her request, and my heart found so much solace in the beauty of harmonizing with my beloved girls, and witnessing how their cherubic voices touched so many strangers. To live my life in the hopes of being remembered so passionately and beautifully by my friends and colleagues is now my goal.

Fate grips us and tears things apart just as much as it fills us and gives us such abundance. If these difficult lessons in feeling real gratitude and savouring each blessed moment weren’t enough, the universe sent some cruel irony my way in the form of the news of a somewhat distant colleague from the performing world. She chose to end her own life quite suddenly only a week ago.

The idea of suicide was one that filled me with scorn and contempt not long ago. It was hard to find compassion after watching so many people suffer because lives were ended/ing too soon. My older, more humble self shudders to imagine a day-to-day reality so painful that one must snuff out their own light to escape the bleakness of their lives.

It’s so fragile. We are so fragile.

All I can think to do in this landscape of so much love and so much light and so much loss is to gingerly make my way through each day. My sage therapist urges me to create the memories I want to have when I look back on my life, and I’m trying so hard to do this every day.

Please dear friends, take a moment, right now and breathe. Feel what it is to have the chance to draw breath, to move through space, to think and feel and hunger and love. Think of the challenges and hardships you face, and think of how many blessings you have to balance that.

This year, consider what you are giving rather than getting. We’re changing things up this year and trying to help the children value time and experience more than toys. Our plan is to spend Christmas on a beach somewhere, healing our hearts and indulging in the company of our little darlings. I hope you too can find meaningful ways to spend the season….

The Lady Comes Knocking

The Amazing Dashiell

This week has been wrapped in the familiar haze of a place I’d hoped to avoid for a few more years. A dear friend of my love’s is losing his father to cancer (I always, always want to capitalize that word) in New York, and tonight we embark on a midnight road trip, Thelma and Louise style to lend our love, keep his apartment warm, and probably stock his freezer.

These painful stories are not my own, but they are so much the same in their telling. Someone strong and vital, a real force in this world, much loved and admired, taken down slowly by wasting illness while his loved ones stand by feeling entirely helpless and exquisitely mortal.

His daughter was married in his hospital room before he was moved home to hospice care. They weren’t sure he would make it, and wanted to act quickly so he could share the moment. Martha Stewart writes about this here. I can’t imagine anything in the world more bittersweet – such important moments happening simultaneously. My heart is aching for people I don’t even know.

Because I do know. I know what the gentle fingers of death feel like when She is near. Not disease. Disease is cruel, and angry, and unfair. Death is the gentle release at the end of it all, and when She is close, I can now feel Her and remember Her, like an ancient Mother, folding us gently into Her darkness. The hardest part is witnessing our loved ones, and ourselves opening our arms to this visitor that we’ve been taught to fear since childhood – whispering her name to the winds to speed her imminent arrival along.

I’m packing for tonight’s long drive to the Big Apple. I’m making lists, and crossing things off, all while sitting my best friend’s nine-month-old boy Dashiell. He’s incredibly sweet in his disposition, like he knows my heart needs to be reminded of the overwhelming beauty of life. He is hope, and possibility and happiness in a solid man-baby chunk of dazzling smiles and delighted chortles. He naps eats and entertains like clockwork, and he is the most precious reminder of why we must all use every day like a precious gift before the Lady comes knocking. My own girls are far away,warming the heart and soul of their visiting grandmother and I am aching for them right now.  I take comfort in the knowledge that they are probably inspiring the same feelings of gratitude in her huge heart right now.

The road trip flies by, the hours seem like minutes with my beautiful company and the comforting warmth of deep, fueling love at the other end. We are all for each other in this world we have carved out, and if one of us hurts, we all hurt.

New York City is the dazzling, outrageous boyfriend I left behind so long ago, and it fills me with joy to see him again. I stroll through the streets, delighted by everything I see, open and drinking it all in. I’m savoring every moment for those who no longer taste this feast