Joannie Rochette, I can relate.

An Open Letter to Canadian Figure Skater Joannie Rochette:

Dear Joannie,

I watched the tragedy in your young life unfold over the past week along with the rest of the world. I looked on as, following your short skate, you looked heavenward and mouthed the word, “Mom.” And just like the millions of other viewers, my heart went out to you. But unlike most of them, I could relate.

No, I was never an Olympic medal hopeful, bound for an international stage. But I suffered a similar loss when I was about to take the stage for the biggest moment of my life.

It was May 1992, I was 23 years old with just two weeks to go before my wedding day when I got the call. It was my big sister Julie, calling to tell me that our Mom had suffered a stroke and that I had to get to the hospital right away. By the time I got there, she was in a coma. The next morning, she died. She was just 53.

You are 24 years old and your Mom was 55 when she suffered the massive heart attack that took her life last weekend. We have a lot in common. I wish we didn’t.

But tragedy, as you can see, doesn’t concern itself with timing. I can’t tell you how many times I’ve wondered why my Mom — if God had to call her home — couldn’t have lived just two more weeks. Long enough to see me walk down the aisle, be a part of the family photos, see us off on our honeymoon. How many times did I look skyward and, in my anger and grief, shout, “Why God? Why now? You couldn’t have waited two more weeks? What’s two weeks to You?”

I know you will always wonder why your Mom couldn’t have been allowed to live long enough to see the culmination of your years of hard work and dedication — and all of the sacrifices she made that brought you to Vancouver. I’m sure that question has already run through your mind dozens of times.

What can I share with you as I look back over the painful days and weeks that followed? If I could take a time machine back to May 1992 and my current self could talk to my younger self, this is what I’d tell her:

The road ahead is going to be tough, but you’ll make it through. In the days, weeks, and months that followed my Mom’s death, I literally felt like I couldn’t go on. I cried through my honeymoon and that summer, every morning as I was getting ready for work, I’d cry over the porcelain sink in our apartment bathroom until the tears would no longer come, until I was fresh out and knew it was safe to put on some make-up.

You still have your Dad. Love him with all you’ve got. A week or two after my Mom’s death, my Dad took me to our favorite pizza joint. We ordered a deep-dish pepperoni double cheese. But my vision was so blurry from the tears that I couldn’t even see to take a bite.

That’s when he reached over, placed his hand on mine and said, “You’ve still got me.”

You’re now a member of a very small club. For a long time, I couldn’t find anyone I could relate to. I attended a grief support group once — but the people there were old enough to be my grandparents and, when it was my turn, and I shared the loss of my Mother, they were unfazed. Many of them had lost their mothers, too. Sure, I thought to myself, but you were 60 or 70 when it happened, not 23. I never went back.

Be patient. There are people out there who have suffered a similar loss, and you will find them. When you do, don’t be afraid to open your heart.

Progress is one step forward, two steps back. You will likely feel an emotion you might not be accustomed to — jealousy. Many times over the years, I watched my girlfrends with their Moms and I felt envy. I didn’t want to feel it — but I couldn’t help myself. They had the amazing blessing of having their Mom by their side when they walked down the aisle, when their first baby came into the world, when life got hard and they needed a shoulder to cry on. Sometimes, I felt myself looking longingly at a mother and daughter together at the mall. It was years before I could ride the escalator at the mall where my Mom and I used to shop, where we picked out my homecoming and prom dresses.

Someday, when enough time has passed, you will be able to feel genuinely happy for the people in your life who have the great fortune to still have their moms. You will never forget the wrenching pain of your loss, and you will say a silent prayer that God allows them to have their mothers in their lives for a long, long time to come. And it will bring you peace.

You are stronger than you know. You’ve already proved it to the world. You are nothing short of amazing. Your courage is remarkable and you’ve done your Mom proud. But being strong doesn’t mean you won’t have your moments. Let yourself sob, feel anger, balk at the injustice of it all. It’s OK.

There’s nothing anyone can do or say that will heal your broken heart or take the excruciating pain away. Believe me, I wish I could.

Well, maybe there is one thing. You’re going to be OK. In fact, though you will never, ever, forget your Mom, you will come to terms with her loss and you will feel truly happy again. I promise.

In the meantime, I wish I were there with you. I wish I could hold you at those moments when you’re crying so hard you think you’re going to suffocate. I’d tell you that you are beautiful and wonderful and courageous and that it’s going to be OK. That your Mom will continue to live on through you.

Godspeed.

Rapunzel…Let Down Your Hair!

Me, sporting one of my wigs and a crown of flowers, with Theo at the 2006 Gaylord, Mich. Alpenfest

It took me nearly four years, but I finally did it. Yesterday. I donated all of the wigs, bandanas and a knit cap I wore when I was going through chemo. It wasn’t as easy as it sounds.

I came across them a couple of months ago, when I was cleaning out my closet. There was the wig with the long, thick blonde hair that I’d sometimes pull up into a ponytail or through the back of a baseball cap, the shoulder-length one with soft waves that had fooled everyone at my high school reunion, the sexy Marilyn Monroe platinum blonde one that I wore when I was feeling well enough for a night on the town.

As I searched a little farther back on the shelf, I saw all of the bandanas my cousin Christine had made for me — the wedgewood blue one covered in tiny silver stars, the bright yellow one with jewels sewn in the shape of flowers, the breast-cancer-ribbon pink one, and my favorite — the tie-dye one. At the very back, I came across the sable knit cap my friend Maureen had knitted for me over the course of the cold winter weekend when I’d first received my diagnosis. I took everything off of the shelf, packed it carefully and set it aside. I’d bring it with me to my next appointment at the Beaumont Breast Care Center.

Yesterday morning, I grabbed the bag and threw it in the car. I was off for my quarterly blood draw.

After my appointment, I stopped by the Resource Center. That’s where I met Ruth, the soft-spoken woman with the silver hair who oversees the Center.

“I thought maybe someone else could use these,” I said. As I opened the bag and began unpacking its contents, I found myself sharing moments from 2006. “I wore this tie-dyed bandana to a Tigers game in June, and here’s the wig I wore to my high school reunion. It did the trick — no one even realized I was going through chemo.

“This one — well, it made me feel sexy when my husband and I were out celebrating our 7th wedding annivesary,” I continued. “And surely someone could use this knit cap in weather like this,” I said, thinking of an older, bald-headed woman being pushed in a wheelchair I’d seen in the Cancer Center just a few minutes earlier.

Ruth listened intently and patiently as I made my way down to the bottom of the bag. There was a brief silence and then I looked into her eyes and, by way of explanation, said, “I’ve had this stuff for four years now, and I meant to donate it sooner. But I guess I was afraid to — afraid, somehow, that I’d be tempting fate.”

Ruth put her hand over mine, nodded gently and said, “Lots of women feel that way.”

I told her that I’d be celebrating my fourth anniversary cancer-free on March 3, 2010, and that I was finally beginning to feel a little more secure, a little more sure that I was going to be OK.

“I won’t be needing these anymore,” I said, perhaps more to myself than to her. I turned then, leaving everything sprawled on the table in her office,

The bandanas, the wigs, the knit cap have a job to do for other women who are going through what I once did, not so long ago. It was time for me — and for them — to move on.

Honey, Did You Flip the Toad?

We’ve added another item to the Bedtime Checklist at our house. Yep. Right after Let the Dogs Out, Check the Kid, the Outdoor Lights, the Doorlocks…there’s Flip the Toad.

Last September, my four-year-old son, Theo, caught a baby toad in our back yard. Long story short…we kept the little critter — who’s scored quite the plush digs. We call him Toad the Wet Sprocket after the 90s band — TTWS for short.

A couple of weeks ago, TTWS fell ill. He stopped eating, could only open his right eye, and was lethargic. And, his condition caused him to be, well, off balance…

The first time I passed his terrarium and saw him on his back, his little webbed feet sprawled in all directions, I cringed. I was sure he was toast and was just beginning to contemplate what one does with toad, er, remains when I saw him blink. Poor little guy was alive — just stuck in a most compromising position.

So, I reached in and flipped him over. He shook it off and hopped over to his favorite spot — a little flower pot in the corner. Let the toad flipping begin…

Now, of course, while my head tells me he’s just a toad…my heart tells me different. So, I called our friend Kyle, who’s a naturalist. He outlined several possible scenarios — and their remedies. I tried each one — and hit payday. TTWS was on the mend…but still had a few, er, balance issues.

Pretty soon, checking the toad’s position when we passed his cage became the routine. I’d find myself reaching in to turn the poor guy right-side-up a few times a day, and I’d notice my husband, Don, doing the same. If it’s possible for any toad to exhibit gratitude, it’s TTWS.

A word of warning for pet toad owners everywhere — toad flipping can become quite the commitment. Saturday, after returning from a birthday party, I walked in and noticed that TTWS was, once again, on his back. We’d been gone for hours and I wondered just how long he’d been staring at the ceiling…he was noticeably relieved when I reached in to flip him.

Thankfully, the little guy is regaining his strength, which, translated, means a slowdown on the daily required toad flipping at our house. And, come Spring, if all goes as planned, we’ll be releasing him back to the wild so that he can carry on…

But I’ll never forget him. After all, he’s added something rich to our family’s repertoire…just before bed, you can be sure I’ll be asking Don, “Honey, did you flip the toad?”

And maybe, just maybe, if I catch him off guard, I’ll hear him utter, “Dagnabbit!” as he hauls himself out of bed to go check…

So, You Want to Be Happy…

Editor’s Note:
Often, it isn’t until we’ve had a major health crisis that we hear about (or pay attention to) the “whole body” approach to health. I came across this Top 10 List (watch out, David Letterman!) and had to share. They call it the
Ten Tenets of Whole Living (from http://www.wholeliving.com). I call it the Top Ten for a Great Life.

1. Happiness is a choice. Make that choice today and every day.

2. Good health isn’t a gift; it’s a habit you cultivate.

3. A healthy, fit body is not enough–true fitness engages the spirit.

4. Think more about what you should eat than what you shouldn’t.

5. Laugh at yourself. You’re funny.

6. Nurture your spirit. It’s your source of strength.

7. Stay connected to the natural world. It will feed your soul.

8. Believe in yourself. Your intuition is rarely wrong.

9. It’s never too late to take the first step toward your aspirations.

10. What you pay attention to will thrive.

Which ones are your favorites? I love Nos. 5, 8, 9 and 10…it’s so hard to choose…

Take my challenge: Print it off and hang it someplace where you’ll see it. (I did.)

Then, every day, pick one, read it, then let it go…let it find its way into your soul…Results guaranteed…

Did You REALLY Just Ask Me That?

“So, how do you suppose this happened?” the nurse at Urgent Care asked me.

I blinked a couple of times, then shifted my eyes to the left, then the right, hoping I’d find the answer to her question on, say, the Yes You Can! Quit Smoking poster hanging on the wall.

“How did this happen?” I repeated, more to myself than to her. I knew I couldn’t possibly be thinking straight after the nearly 24 hours of heaving that had brought me here in the first place, but…could this nurse possibly be looking for an explanation of how one catches a gastro-intestinal virus?

Suddenly, the words began streaming through my head. And if I could have mustered the energy, my reply would’ve went something like this: Well, you see, I’ve caught a virus, probably from that guy who insisted on shaking my hand yesterday at the seminar…

And it wasn’t even sarcasm at that moment. It was just plain delirium.

It wasn’t until much later — like four hours, an IV and one anti-nausea shot later — that I realized what she was really asking me. That nurse wanted to know if my symptoms were the result of, you know, a little “overindulgence” on my part. Yup. That’s right. She was asking me if I was hungover!!!!

Now, wouldn’t that be something — we’re talking me here, Ms. Responsible Mom-Wife-Writer — not just hungover at 4 o’clock on a Thursday afternoon — but so much so that I’d actually landed myself in this small, sterile, cold, tiled room at Urgent Care?

I’d have laughed hysterically had I not been so ill.

And the kicker? As she was about to release the plunger on the shot she said, “You know, this is going to hurt some. You’re going to feel a pinch and then a stinging sensation.”

When I didn’t respond — just give me the damn shot already, I was thinking! — she repeated herself, as if I was both hungover and deaf. That’s when I told her that this little itty-bitty shot was a walk in the park compared to the double mastectomy, reconstruction and chemo I’d been through.

Funny how a few words completely changed her perspective on the situation…

Getting on with the Business of Living

When I created this blog in Spring 2009, my purpose was to share my story as the third of four known generations of BRCA 1 carriers in my family, to offer information, support, and a place for other gene carriers and their friends and family to do the same.

About six months into it, I am ashamed yet compelled to admit, I lost some of my steam. I’ve often pondered the reasons why.

Yet, in spite of me, the blog lived on. I was amazed at how many daily visits the blog was still attracting, despite the growing gaps and spaces between my posts.

From the start, this blog, I believe, has in a small way, filled a void. That notion was when I received this email from a young woman named Natalie Evans (see Guest Post) who just discovered she is BRCA 2 positive:

“The first thing I did after receiving my result, after having a little cry of course, was to search BRCA 2 info on the Internet,” she wrote. “Considering I was still quite upset, I quickly realized that what I really wanted to do was read about someone who had been in the same position as me – which brought me to your blog. Thank you for posting. The experiences you share about your BRCA status are important, and it really helped reading them. ”

I am deeply touched by Natalie’s words. They make every keystroke worthwhile.

I am also grateful to her for expressing exactly what I’ve been unable to put my finger on during the past few months. From a discussion I had just this morning with Natalie:

“You are, however, right to say that your status is not, and should not be, the focal point of your life. I think those of us who share this experience would love to see entries about things other than the BRCA genes as well, because it is inspiring to see someone getting on with the business of living – someone who also just happens to carry the BRCA gene.

Though BRCA gene status will continue to be the theme of this blog, it will no longer be the only thing I write about here.

This blog and future blog posts will be about the breast cancer genes…but they will also be about getting on with the business of living — the crazy, sometimes heart-wrenching, but always beautiful, business of living.

Thank you, Natalie.

Guest Post: Gene Positive Status is Not a Life Sentence

Editor’s Note: The first email I opened this morning was from across the pond, written by a young woman who had just received news of her BRCA 2 positive status. Her words are so poignant, so valuable, that I wrote to her immediately and asked if I could share them as a Guest Post. With Natalie’s blessing, here they are:

by Natalie

I received the results of my test today – and I carry the BRCA2 gene. I guess I knew I did, although until this morning I still lived with that tension between being resigned to the fact that I probably did have the gene, and that secret, guilty hope that I might not. The probability having been 50/50, I always had that image of a coin flipping, or Schrodinger’s cat, and imagined myself getting either the good, or bad, news, and my two very different reactions.

I’m 29, my mother first got cancer when I was 11 (when she was 39), so the time for me to start the process of preventative treatment is now. I’m British and I live and work in Spain, and the one thing that shocks me, culturally, reading the posts on this blog, is the additional stress that these women have to go through regarding what the insurance will or will not pay for. Obviously health care is free in the UK and Spain and my mother, having had three separate cancers, is still alive, happy and strong and has never had to pay a single penny.

I also just happen to work as a researcher in a medical anthropology department and plan on writing a paper on the differences that my sister and I have encountered in the Spanish and British genetic testing services (genetic counselling is obligatory in the UK, whereas it is not offered here in Spain).

I plan to make further posts in the future and I’d be interested to hear about other peoples experiences of genetic testing etc.

Like my doctor said today, this is not a life sentence. There are actions we can take, and it is not the end of the world.

After writing this post, I’m starting to feel better already.