Today, on what would have been my mom’s 66th birthday, another woman bravely shared her decision to have an elective double mastectomy after she found out that she carried the BRCA1 gene mutation for breast cancer.

Angelina Jolie shared this very personal decision with the world in the New York Times Op-Ed today.

The sharing of this news has thankfully reignited an important conversation that is near and dear to my heart, breast cancer prevention and the need for a cure.

If you’ve read the article and now have questions about BRCA and genetic testing, I encourage you to please check out the group Force: Facing Our Risk of Cancer Empowered. They do terrific work and provide great information and support for those that are considering genetic testing.

Thank you Angelina for sharing your story and bringing awareness to women everywhere about genetic testing and the preventive measures that are available today for hereditary breast cancer.

Happy Birthday Mom – we are getting closer to a cure. Love you. Miss you.

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“Mommy? Did your Mommy have loo-kia-meee-ah?”

My back was turned at the sink when my 6 year old daughter asked me this direct question with only 10 minutes left in our morning routine to get out the door. Instantly, I felt like a Mack truck had slammed into my gut. I braced myself with the counter and tried to turn to face her sweet face. She was chewing her frosted mini-wheats and her spoon still dangled in the air. I met her eyes and started to answer but the words did not come. Instead, my eyes  welled and the tears fell.

I had never cried before in front of my daughter.

I have never used the words, “breast cancer” or “leukemia” to describe my mother’s health battles so I was shocked by her question.  To date, I had only shared that Mommy’s Mommy was now in heaven and that she had gotten very sick and that God needed her to do angels’ work.  This explanation had seemed to suffice – until now… when the questions came at me, like a tsunami.

“Honey, where did you hear about leukemia?”

“We are doing Pennies for Patients at school. It’s for loo-kia-meee-ah.”

“Leukemia.” 

“Yes. There’s a Kinderfriend that has leukemia and we raising money to help them.”

“That’s wonderful honey.”

“So did your Mommy have it? What is it?”

“Well… “

And here’s where I’d love to say I handled this parenting challenge beautifully and gave her the most age-appropriate explanation of what ‘cancer’ is and why some people get it and some people don’t. And how I comforted her fears about what this scary disease was and how, yes, even sometimes children get it.

But I didn’t .

Instead I blubbered my way through an extremely lame metaphor of how cancer cells were like bad Lego blocks in your body that stop doing their intended job. I’m pretty sure I confused her the minute I said Legos. Heck, I don’t even know what I was talking about… I said something about needing medicine that works really really hard to ‘poison the bad cells’ so they go away. To this she asked:

“Mommy why does the medicine make your hair fall out?”  Clearly, she had more information than she was letting on.

A second Mack truck slammed into my heart.  The tears came and the words got stuck in the back of my throat like a hard lump. I wasn’t ready for this.

“Mommy, you don’t have to tell me if you don’t want to.”

Oh jeez, please make it stop.

“No honey, I’m ok. I’m just sad.” *tears. gasp. sob*. ” It just makes me sad to think about when my Mommy was sick.”

Again, I made a dismal attempt at a mini-Biology and Chemistry lesson that was appropriate for a 1st grader.  I told her the medicine or “chemotherapy” was supposed to target the bad cells but didn’t always know the difference between the bad Lego blocks and the good ones so sometimes it had to attack the cells that make your hair. She seemed satisfied with the answer and went back to eating her mini-wheats.

“But Mommy, why doesn’t the medicine always work?”

And then I was at a loss. It was a great question. Why can’t we fix this? Why can’t we have a cure for cancer?

“I don’t know honey.”

Luckily my husband was still at home and when I closed the bathroom door sobbing, he was able to run interference.  I told him about the brief conversation over mini-wheats and how worried I was that I’d freaked our daughter out by crying in front of her. Through my tears, I tried to tell him how worried I was that she would think she made me sad by asking about my Mom, which is the last thing on earth I’d want her to feel and how I’d done a horrendous job explaining what cancer was. So he called her in and between the 3 of us sitting on the toilet seat and the edge of the tub we had one of the most meaningful family chats to date. With his help, we reassured her of why Mommy was really crying and how it was ok for me to cry and how it was ok for her to ask questions. Together we tried to explain ‘cancer’ and what it was. We didn’t dwell on it but made sure she was ok with it all.

Thank goodness he had been home.

For the rest of the day, all I could think of was how badly I wished I would never have to explain ‘cancer’ to my kids. But it was too late, the reality of this sometimes unfair world was here and my kids were now privy to this vocabulary: cancer, leukemia. It didn’t seem fair.

That following Saturday, Anna and Jack organized a lemonade stand to help fill her box for Pennies for Patients and Alex sat with them on the curb. I smiled with pride as I watched my kids continue to help find a cure for cancer. I hope that one day, in their lifetime, they will be able to tell their kids: “Cancer WAS this horrible disease that took your great-grandmother, but we helped cure it.”

Wouldn’t that be great?

Pennies for Patients

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Mom, me and bro: our last Christmas together

Holidays can be tough without my mom.  She always made the holidays extra special with simple and small touches; from decorating the house to convincing the entire dinner table to join in (and ACT OUT) the 12 Days of Christmas (ever been to Café Un Deux Trois during the holidays?).

I feel the void of her passing tenfold between Halloween and New Year’s.

And it sucks.

So whenever I need a pick-me-up I grab the kids and we jump in the car and head for my neighbors’ street.

There’s a cul-de-sac about a mile away from my house that melts my heart. It has 3 homes on it that do a SPECTACULAR job of decorating their lawns and homes for the holidays. Some might think it borders on “over the top” and “tacky” but to me… this is one of THE best things about Christmas.

My mom was quirky and fun and one of her favorite things to do at the holidays was to drive around and try to find the best and worst Christmas lights. We did this a lot when I was growing up and it quickly became a tradition. My boyfriend (now my husband) was dragged along and put up with it (smart man).

Thankfully, he now appreciates why I insist on loading up the car with our pajama-clad kids and driving around looking at lights. He gets it. He remembers how excited my mom would get when we’d turn a corner and collectively gasp and squint from the glare of an emblazoned crèche. And I’m so grateful.

If I ever grumble when I start to put up own Christmas decorations, I try to remember that this little effort will bring me and my family a lot of joy.  Because it does.  And when I drive down my neighbor’s street and see all the sparkly lights it just makes me smile. I can’t help it. I think of the hours and hours and hours it must have taken them to put up these elaborate displays, from the Hawaiian themed ‘Mele Kalikimaka’ house complete with diving dolphins and Luau’d waving Santa; to the full-on Santa with eight glittery reindeer.

So I want to say a very heartfelt and big THANK YOU to my special random neighbors and to everyone out there that takes the time and effort to decorate their homes for the holidays.

These efforts bring a little piece of my mom back to me at the holidays. I smile and remember the gaudy and glitzy displays from years ago and laughing in the car…  And I look at my own little family and am so incredibly grateful that I also get to share this with them.

To my neighbor that did this:

THANK YOU!!!

and to my Mom, Merry Christmas thank you for making those memories.

Miss you.

xo,

SARA

The post Dear Neighbors With The Over The Top Christmas Lights, I Love You. appeared first on Periwinkle Papillon.

My daughter just made my day, scratch that my month –  probably my year.

While working on her 1st grade homework this morning, in which she’s supposed to talk about our Thanksgiving traditions, she said:

“We have turkey, mashed potatoes, and crackers right?…

Oh wait! That’s not until Christmas!”

And that made my heart melt.

Because it confirmed for me that I’ve successfully passed on at least one tradition from my mom, the tradition of Christmas crackers.

My daughter will have no idea how this small statement warmed my soul today, a day that for no particular reason other than it’s Tuesday, I woke up feeling especially distant from my mom’s memory.

And then WHAM! Her spirit came soaring back in the room.

I’m so grateful for traditions and for my children and for the opportunity to share my wonderful mother’s traditions and stories.

What are some of your family’s Thanksgiving traditions?

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Panda = Me, Frog = my little brother. Circa 1980 somewhere in Canada

Remember when Halloween costumes were homemade?

I do.

When I was little my mother made my brother and I a bunch of Halloween costumes that would keep us toasty in the cold Canadian night air.  Over the years there was a panda, a frog, a lion and eventually an E.T. foam head with matching glowing extra-terrestrial finger. They were awesome and complete labors of love!

All we needed was our halloween sacks, snow boots and parkas. Loved it!

Thanks Mom!

The post Happy Vintage Halloween appeared first on Periwinkle Papillon.

The other day I ran into the pharmacy to pick up a last minute birthday card and was stopped in my tracks.

My mother’s smell passed me in the shampoo aisle.

Literally, my heart skipped a beat.

I froze.

So distinct.

So strong.

That smell.

It was as if she had just been right there.

I soaked it in and appreciated all the memories the musky sweet smell brought flooding back: her hugs, her laugh, the drive home from college sophomore year…

Aromatics Elixir by Clinique was her favorite perfume.  She used to kid that it had actual pheromones in it and it would help her land the ‘right’ guy. Needless to say, she wore it often.

I didn’t cry. I just stopped and smiled and felt her hug.

I love it when that happens.

What smells do you love? Does anything remind you of a loved one? 

The post The Smell of You appeared first on Periwinkle Papillon.

For those of you expecting a Hurricane Irene wrap-up, I’m sorry this isn’t one. Instead I took one of MamaKat’s writing prompts and went with it: “4.) Tell your Grandma’s Story.”

My grandmother’s name was Irene. I never met her but I’m named for her, my middle name is Irene.

Irene, my Grandmother

She died very young.
At 39, she left a husband and 2 daughters behind after she lost her battle with ovarian cancer.

Her daughter, my mother, was only six, the same age my daughter, Anna is now.  She too shares her Grandmother’s name as her middle name: Susan, for the grandmother she will never meet.

I can’t imagine what that was like at that age, but I do know what it was like to become a mother without a mother, because my mother did die young, at 53.  I was 24 and then I became a mother at age 30.

Now I share something with my mother, no Grandmother to pass down the stories, explain the pictures.

It all falls to me.

There aren’t a lot of stories about Irene because she died so young. What little I do know is from a story my mother shared when I had the courage to ask her about her mother.

So this is Irene’s story, what little I know of it.

Irene was the daughter from a Scottish pedigree of missionaries, Ninian and Janey. Their genealogical roots muddy at best but traced back to the Isle of Man and an orphanage in Scotland. Together with her sister, Beatrice, the family made their way to Canada in hopes to rebuild.

At twenty five, she met my grandfather and a passionate love affair bloomed. They were immediately enamored and married; children and a family were the dream.

But children didn’t come.

For many years.

As Murphy’s wonderful law would have it, it wasn’t until finalizing an adoption that they became pregnant with my mother. Together with her sister, my mother was lovingly raised as if she were a twin.

For six short years.

Until their mother got sick.

My Grandmother Irene, Lani and my mother, Susan age 3

And then Irene’s beautiful hair turned silver gray and suddenly she was gone.

Before they even got to know her.

I know this about Irene:

She adored her girls.

She always got dressed up to greet my Grandpa at the door after work.

She believed “your hair is your crowning glory.”

She was funny.

She was tiny waisted until she became ill.

She kept the house very tidy.

and

… She would have been very proud of her daughters, of me and her great-grandchildren.

Ok I made the last one up, but I believe it.

I have to.

When it comes to parenting I am often chasing ghosts for advice, my mother, her mother – what did they do in this situation or that situation? I have now eclipsed the time period when my own mother was mothered.  I don’t know how she felt about growing up without her mother or about how she felt becoming a mother without her own mother around.

And I can’t ask her about it.

I don’t plan on my children having to wonder about this.

You see, I  am here to break the chain…

…to end this legacy of cancer and leaving too soon.

My Grandmother Irene, 6 months before she became terminally ill with ovarian cancer.

– Sara

In other news: we have a winner for the New Balance Lace Up For the Cure shoes!

Congratulations to  

Chris McNicholas!

I will contact you by email to get your shoe size and mailing address!!! 

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Part 2: A Decision

[author] [author_image timthumb=’on’]http://www.periwinklepapillon.com/wp-content/uploads/2011/07/sara_profile_pic.jpg[/author_image] [author_info]This is Part 2 of a series I am writing about my decision to get tested for the BRCA 1 & 2 genes. For Part 1: Girl Parts please click here.

These posts highlight my journey in deciding to get genetic testing for the BRCA 1 and 2 genes, the breast cancer gene markers. It’s personal in nature and I hope also a little bit educational. If anyone has any questions about the process please don’t hesitate to contact me. I’d be happy to chat with anyone about this.[/author_info] [/author]

I consider myself a thorough person as I don’t usually make rash decisions. ‘Usually’ because I can’t say that my decision to get a tattoo at age 16 was all that premeditated.  For the most part I will research the crap out of something before making a decision.  This was true for my decision to finally get tested for the BRCA 1 & 2 genes, the breast and ovarian cancer markers.

As I mentioned before, when I discovered the sex of my first baby was a little girl, I panicked. Girl parts to me meant trouble. Lots of trouble. Breasts could one day mean cancerand that word had been prominent through out my mom’s own history.

The worst part was now she was gone and aside from confiding in my husband, I carried this guilt-leaden fear in silence.  I was supposed to be full of joy and yet I was full of trepidation. I was scared, pissed and angry. My mother’s death and its cause was overshawdoing what should have been one of the happiest moments of my life. At least if she was here I could confide in her or be reassured by her. But the reality was the cells in her girl parts had mutated and killed her.  Possibly because of her genetic history.

Breast Cancer Cell - source: Alternative Cancer.net

My only way to take charge of the situation was to find out once and for all if I carried the genes. And so began my research.

I will add here that this was a long journey from research to action. I did not, for reasons I will touch upon, actually get the test done for another 4 years. See what I mean by thorough? I took my time and carefully weighed what getting the test would mean for me.

Having a baby wasn’t the first time I had thought about getting genetic testing, at least it was not the first time I had heard about it.

I had gone to almost all of my mother’s doctor’s appointments. I grew attached to all of her “teams” and because she was so friendly their affection for her usually spilled over onto me.  This is how annoyingly popular she was: when she was admitted for pneumonia the Infusion Room nurses hung a sign in the window that said: “Get ‘Em Susan!” because her room faced their view. They looked out for her.

They looked out for me too.  I mention this because it was at an appointment to discuss her prognosis that my future health was brought up.  After the grim news and my mother’s subsequent jokes about getting her affairs in order and high-tailing it to a beach with a margarita, the doctor asked if my mother would consider get genetic testing.

When he asked her, he was looking directly at me.

Without hesitation my mother said no.

She couldn’t handle that information. And I knew exactly what she meant. She couldn’t handle dealing with her own mortality AND potentially knowing she had passed it on to her kids. That would be too much.

We never mentioned it again.

For years when I would meet with my own team of doctors and they would ask me if I would consider getting tested for the breast cancer genes, my answer was always the same: “Why? What would I do differently?” Nobody had a good answer for me – nobody said: well for starters you could have a double mastectomy.

Source: The Liberal Heretic

That was until my OBGYN brought it up.  She had also been my mother’s gynecologist as well and knew our family history. Her recommendation went something like this: “Have your kids early. Have’em quick and then when you are done, rip it all OUT.”

Your girl parts she meant.

Um ok…  That was a little jarring to hear.

[Side note: I loved my OB. I think she was probably a little softer spoken than what I quoted above but she was no bullshit and extremely thorough. She insisted my mom get a second test and that’s how we discovered she had endometrial cancer. Oh yeah did I tell you my mom had cancer 4 times? Who gets cancer four times?!?]

This suggestion was not completely accepted by all my doctors. Radical was a word some used. Unnecessary was another. Insurance would never cover it others said. The medical community was not on the same page with surgery as a preventive measure against breast cancer unless…  Unless… you tested positive for the genes.

If you had the gene then this would all make sense.

Take out the parts before their cells mutate.

The post BRCA Testing Part 2: Ready to Decide appeared first on Periwinkle Papillon.

This is a special Wordless Wednesday with the reminder, to be goofy.

Mom Lesson: Be Goofy

Miss ya Mommy.

Thanks for being goofy and reminding me to loosen up.
love,
Sara

The post Wordless Wednesday – Be Goofy appeared first on Periwinkle Papillon.

Part One: Girl Parts

[author] [author_image timthumb=’on’]http://www.periwinklepapillon.com/wp-content/uploads/2011/07/sara_profile_pic.jpg[/author_image] [author_info]This next series of posts will highlight my journey in deciding to get genetic testing for the BRCA 1 and 2 genes, the breast cancer gene markers. It’s personal in nature and I hope also a little bit educational. If anyone has any questions about the process please don’t hesitate to contact me. I’d be happy to chat with anyone about this.[/author_info] [/author]

When I first found out I was successfully pregnant, I begged my OB to hazard a guess as to the baby’s sex at 15 weeks. This is way earlier than any doctor would normally tell you what you are having because at this point usually not everything is that well defined. But I persisted and the doctor indulged me, after all he had a fifty-fifty shot at being right. So he told me:

“A boy! I’m 60% sure it’s a boy!”  Then he added: “And I’m never wrong.”

Happily I called my family to tell them the good news. We were almost out of the woods after two miscarriages and felt we could now share the long awaited good news. “A baby! A boy!”

Christmas vacation came and went and I dreamily imagined life with our newborn son.

When we got back from Christmas break my next OB appointment came around and it was time to officially know the sex of our baby. Cockily I went in thinking, yeah, go ahead, we already know.  What the doctor said next shocked and shook me to my core.

“That’s definitely…” (pause for effect) “… a LABIA!”

A WHAT?!??

Alex and I both looked at each other. A what?!?

Wait. What?!
Then it clicked. Girl parts.

“Congratulations, you are going to have baby girl!”

I froze.

I was expecting the word “penis.”  Panic swept through me and I immediately withdrew and got quiet.

At dinner I started to cry.  My husband, having no clue what was going through my mind rushed to my side but my face said it all: I was scared. Really, really scared.

Girl parts…

Breasts.

Anna's 3D ultrasound

I’m not saying this was a normal person’s reaction to hearing the news about the sex of a baby you’ve desperately wanted for years but in hindsight I’d like to think it was the protective mother bear in me showing my claws.  Then again, my reaction may not have been totally unreasonable given that my life so far had been riddled with breast and ovarian cancer. My mother had fought endometrial cancer once and breast cancer TWICE and then lost. Her mother had passed away from ovarian cancer at the age of 34.  Personally, I had had my first mammogram at 21 and was aggressively screened every 6 months ever since.  All of my appointments were met with anxious trepidation and waiting for results was sometimes excruciating.  Basically, some days it felt like I was just waiting for my sentence to begin, for the other shoe to drop.

Girl parts brought nothing but trouble I was convinced.

The guilt that washed over me was intense. Here I was bringing another girl into the world that might have to deal with this legacy. Another daughter possibly having to watch her mother deal with a deadly diagnosis or worse deal with the dreaded C herself.  I felt completely helpless, as if I had failed at motherhood before I even got started.

[Note: I should have been equally upset regardless of the sex of our baby as men can get breast cancer too but at the time I did not fully process this fact.]

Through my tears, I whispered to Alex my fears, trying to keep my composure.  He did what he could to reassure me, with his arm around me saying: “everything is going to be ok.” And while comforting and all, this only gave my pregnancy hormones license to let loose and I became an embarrassing sobbing mess, crying: “I’m sorry I’m defective, I’m so sorry.”

“You’re not.” He answered.  “We will deal with it. C’mon, calm down. It’s ok… Be happy!  A little girl!”  And on and on, he tried.

Finally he resorted to sharing some of his own fears: A daughter meant one day: boys, dating, clothing choices…  Jokingly, he vowed to make it his mission to have all mini-skirts banned by the time she would turn 13 and to drive a petition to make burkas the fashion norm.

I laughed.  This is one of his greatest strengths – to balance me. Somehow he managed to calm my anxiety with logic and reason and then when all else fails he’d make me laugh with his wacko sense of humor.

Once again composed, I switched from basket case to problem solver.  I needed action, a plan to calm my fears.  And for the first time, I suggested and seriously considered getting myself tested for the BRCA 1 and 2 genes, the breast and ovarian cancer gene markers.  I needed to know once and for all.

I was going to be this little girl’s Mommy and I wanted to be around.

…to be continued.

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