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 Evans

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.

Hats Off…Rhonda Traylor’s Story

Rhonda Traylor and me, in the moments following our graduation from Antioch University McGregor, June 29, 2008

I met her in a sea of long black robes and mortarboards. I’d just come down from the stage, where I’d had the privilege of speaking in front of 3,000 people at The Schuster Center in Dayton, Ohio. It was June 29, 2008 and finally, after four years, the birth of my son and a battle with breast cancer, I was about to receive my master’s degree from Antioch University McGregor. It’s a day that was a bit surreal because there had been a time not so long ago when I thought this day might not ever come — in the days following my breast cancer diagnosis.

But it did. And I did it. Not only did I walk across the stage to receive my degree, but I did something that just a few years ago, I wouldn’t have thought possible. I told my story, my family’s story, the story of the BRCA 1 gene, before a crowd of a few thousand. (To read the Speech, “The E-Turn in Life: Being the Difference” in its entirety, see the Speech button at the top of the homepage.)

I shared just how our gene-positive status had impacted the women in my family, from my grandmother to my mother, my sisters, my niece. I shared the power and the wisdom that can be extracted from even the most difficult circumstances life throws at you — and that I do, indeed, believe it is my responsibility to reach as many people with my story as I can. I never imagined for a moment that some of my fellow BRCA 1 and 2 peers were sitting in the audience, listening to my words.

Then something even more amazing happened. I returned to my seat and the music for the processional began. A long line of graduates in flowing gowns and tassles passed me en route to the stage.

Suddenly, a young African-American woman stepped out of line. She walked the few short steps to my seat, stood in front of me, removed her cap, revealing her bald head, and whispered, “BRCA 1″ in my ear. She gave me a hug, then quickly replaced her cap and made her way up the stairs and across the stage.

Following her lead, graduates began to step out of line on their way to the stage, hugging me and sharing a few quick words of inspiration. The outpouring of love and appreciation from my fellow graduates — many of whom were strangers — was one of the most amazing and powerful moments of my life.

I caught up with that young woman following the ceremony. Her name is Rhonda Traylor and she is BRCA 1 positive. On that day, she was in the midst of her battle against breast cancer.

“I didn’t know if I would be able to make it across that stage,” she later told me, as she was so fatigued by the chemotherapy treatments. “They had a wheelchair ready for me, in case I needed help. But I was determined to make it!” And she did.

Rhonda and I still keep in touch and I am thrilled to say that she has finished her treatment and is doing well. She is an amazing person — bright, funny, glass-is-half-full, even on the darkest of days. And how ironic that, that day, Rhonda thought I was the hero for my willingness to share my story.

But I, I have a different version of that day. It’s the story of a young woman fighting breast cancer who willed herself to make it up the steep steps and across that long stage to receive her diploma. That is a true hero. To Rhonda Traylor I say, “You go, girl!”

A Flower or a Weed?

For gene-positive women, the ovaries are both flowers...and weeds.

Like many three-year-olds, when the fields of early spring are blanketed in golden yellow, Theo squeals in delight. He sees dandelions as “flowers,” and often picks Mommy a bouquet.

As grown-ups, most of us think of dandelions as weeds — undesirable. We spend time, money and energy attempting to irradicate them from our lawns.

But are dandelions a weed, or are they a flower? It depends, of course, on your perspective.

The same can be said of the ovaries of a woman who carries the BRCA 1 mutation. Her positive status not only predicts an 88 percent lifetime chance of getting breast cancer, but a 44 percent lifetime chance of an ovarian cancer diagnosis.

If she views her ovaries as what God intended them to be — the first stop in a chain reaction of events that brings about the conception of a miracle, a newborn baby — then they are flowers. If she sees them as the malevolent precursor to ovarian cancer — a cancer that is not only difficult to diagnose in its early stages, but difficult to treat — then she will view them as weeds.

Either way, it’s a clear view, all the way to the horizon. But what happens when to that young woman, that BRCA 1 carrier, the dandelions are both flowers and weeds?

That’s the predicament I find myself in. As I believe John Lennon once said, life is what happens while we’re busy making other plans. And so it was for my husband, Don, and I. Our “plan” was to have two children, about two years apart.

Part A of that plan went beautifully — Theo was born in August 2005. But Part B was put on hold when I was diagnosed with breast cancer in February 2006.

There were lots of “ifs” at that point in my life — but I am a strong believer that looking forward and making plans is the best perspective you can have when you’re in the midst of dire circumstances.

So, we looked toward the future and saw ourselves with two children. I went through in-vitro in the weeks between my double-mastectomy surgery and the first round of chemotherapy so that we could freeze embryos in case the chemo sent me into premature menopause.

I’m now a survivor — three years, three months, two weeks and one day — and you can bet I’m counting! And Don and I have decided to go for #2. If we are blessed with a second baby, fabulous. If we are not, we will move on in life, grateful for the beautiful, healthy little boy that we do have.

In the meantime, in the back of my mind, I am always aware that, as long as I have my ovaries, I am playing a game of Russian Roulette. The odds of ovarian cancer in a BRCA 1 positive woman increase dramatically as a woman moves into her mid-40s and beyond.

Though I am not there yet, I know that my risk is about 1 percent. That’s pretty low, but any risk is still a risk. A risk of cancer, a risk of leaving my beautiful little boy and loving husband behind. And that’s just plain scary.

Yet, as we’re too often reminded, everything in life carries with it some sort of risk. We get into a car and drive to the store, and we take a risk. So, we will play the odds for now, try for #2, see what happens. And, if it doesn’t happen in the next several months to a year or so, we’ll move on.

Moving on for me means going under the knife and having my ovaries removed. That’s the best way for a BRCA 1 carrier to eradicate her risk of gene-related ovarian cancer.

It means changing my perspective, of no longer viewing my ovaries as flowers, but instead, as weeds. And, like many of the decisions I must make as a BRCA 1 positive woman, it won’t be easy. But, I will summon the courage, do what needs to be done, and move on — thankful that I’m able to participate in this beautiful dance called Life.

Guest Blog: BRCA2 and Don’t Know What to Do

Guest Blogger Jenny Fink -- who is BRCA 2 positive -- faces some tough decisions.

Please meet Jenny Fink, a BRCA 2 carrier, who pens Blogging ‘Bout Boys. (Check it out — I’m guest blogging over there tomorrow.)

Breast cancer has haunted me my entire life.

From the time I was little, I knew that breast cancer stalked my family. My maternal grandmother died of breast cancer when I was just five, and one of my maternal aunts had breast cancer sometime when I was a kid. I don’t remember the details, but I do remember my mom ducking into the bathroom to see her scar.

My own mother didn’t develop breast cancer until I was an adult, a married twenty-something living out-of-state. Still, I remember seeing my mother’s mastected breast, dyed green and slice for analysis. It’s not the kind of thing you forget. (My mother, a nurse, specifically asked to see the samples, and I was in the room when they wheeled them in.)

It wasn’t until she was diagnosed with ovarian cancer ten years later that we learned about our genetic mutation. Despite the fact that we knew we were at risk for breast cancer, no one had ever bothered to inform us that ovarian cancer is sometimes linked to hereditary breast cancer.

When we learned about the link between breast and ovarian cancer, I pushed for genetic testing. I’d had enough of health care professionals pushing my concerns under the rug. If I tested positive, I reasoned, I’d have absolute, solid proof of my risk status – and no one could ever again brush off my concerns by saying, “Yes, but has your sister had breast cancer?”

That was a little over two years ago. Finding out I had a BRCA2 mutation was really no big deal; strange as it may sound, for me, the bigger deal would have been finding out I was negative.

Doing something about it has proved to be a little harder.

First, I was nursing. My youngest child was not yet a year, and I was determined to breastfeed him to completion. Continued breastfeeding, I reasoned, was best for both of us.

Now, though, he’s been weaned for the better part of year. It’s time to schedule a screening, but our health insurance recently changed from full coverage to a high deductible ($5,000!) policy. I’d scheduled an appointment at the regional academic medical center to discuss screening and my options, but cancelled it when I realized I’d be paying out of pocket. My plan now is to wait til my annual physical (covered at 100%) and to ask my family doc to recommend a mammogram (which, I think, should also be covered.) As for the MRI I should probably have – well, I’m not sure how I’m going to pay for that just yet.

My situation is not unique. How many of you have a mutation, but limited insurance coverage?

I’m not sure yet what I’ll do regarding prevention; if I’ll try Tamoxifen (though I recently learned that some antidepressants basically disable Tamoxifen) or if I’ll schedule preventive surgery. The scary thing is that I’ve already calculated that surgery may be the cheaper route: if I decide on a prophylactic mastectomy and oophorectomy, I’m pretty sure I’ll meet my $5,000 deductible. If I simply decide to do screening each year… each year, I’ll have to pay $1,500 out-of-pocket for an MRI.

How do you cope financially? Has insurance coverage (or lack of coverage) influenced your healthcare choices?

Support in a Sea of Pink

My life was such a whirlwind of doctors’ appointments, tests, prayers, hope, and pure terror that Spring of 2006 that when she called, it took me a minute to catch on. It was my friend, Mollie. “I want to form a team for this year’s Susan G. Komen Race for the Cure,” she said.

And I was thinking, “That’s great, but why is she calling me to tell me this?”

Then it sunk in. Mollie wanted to form a team in my honor, and the team members would run or walk the 5K for me.

I was really touched.

Mollie took charge of the whole event, from naming our team — Amy’s Walking Angels — to spearheading the fund-raising (we raised $1,000!), picking up our registration packets, and getting everyone organized among the thousands of other walkers and runners that June morning in Detroit.

I was not quite eight weeks out from my double-mastectomy/reconstruction surgery, I had just gone through in-vitro so that I could freeze embryos in the hopes of having a baby post-chemo, and I had just endured my first round of chemotherapy.

I didn’t have to be there. Of course everyone would have understood — and they would have gathered, ran, and walked in my honor that morning.

But I wanted to be there. So, when the alarm when off at 6 a.m. that Saturday morning, we threw on our official Race T-shirts, got into the car and headed for downtown Detroit.

I didn’t think I could walk the entire 5K that day, which left me with two options — the One Mile walk or a ride on the Survivors’ Trolley. I opted for the walk. That way, I could hang with my team for at least part of the time.

But something happened along the way — something quite magical. As the starting line faded into the distance, I found myself becoming more and more energized with every step. When our team hit the One Mile marker and everyone expected me to turn around, I surprised them as well as myself when I didn’t. I kept going. And I crossed the 5K finish line with them.

I’ve often pondered about just what gave me that extra surge of energy that day. And I’ve decided that there isn’t one answer — but many.

It was my friends and my family. My spirits were buoyed by their strength and support and selflessness.

It was the thousands of strangers I walked among. The supporters wear white, while pink is reserved for survivors. In my pink T-shirt and baseball cap that day, I was a member of a very special sisterhood. We recognized each other with a nod, a smile, a brief exchange of words, a simple “God Bless You.”

It was the exchanges between me and other team members — brief, private, but telling conversations where one friend revealed details of his father’s battle with cancer that he’d never told me before and another told me how, when he’d learned of my diagnosis, he felt like he’d been kicked in the stomach — and began training for the 5K. Conversations that you’d never imagine could happen amid a crowd of thousands. But they did.

What I saw and experienced that day was so powerful that it keeps me going back every year for my “fix.” This morning — my fourth year of participation in the Race for the Cure — was no exception.

Along the way, I stopped to take a photo of a group of young girls waving hot pink pom-pons who were cheering for the walkers. As I got closer and focused my camera lens, they noticed my pink survivor T-shirt and began cheering very loudly — just for me. I was so taken aback that my rarely-seen shy side came out and I actually blushed.

But, as I rejoined my group and continued the walk, it also served as a reminder that in the battle of breast cancer, we are never alone.

Guest Post: Pumas in the Crevasse

Guest Blogger and Survivor Gene Rooks tells why she decided against reconstruction.

by Gene Rooks

Knowing Amy through our IClub connections, and sharing the breast cancer experience, I had to laugh at her stories about being naked in Iceland (see Naked at the Blue Lagoon post), and the decision to go with “innies” or “outies.” I also applaud her decision to go for reconstruction the whole way — including the outies. But I am a whole lot older than Amy, and I chose a different route.

Unlike some of you, I don’t carry a breast cancer gene. But at the age of 73, during a routine mammo, a suspicious shadow showed up. I went for the return screening on Dec. 5, and as the technician, and then the radiologist, came in and went over and over me with the sonar, I just knew something was there. At the same time, I had a feeling of complete peace come over me, as I also knew it was in God’s hands, and I would be all right, no matter what the progress of the disease might be.

Things happened so fast, I really didn’t have time to stress out over it. An immediate biopsy was ordered, and I reported to the doctor on Dec. 20 for the results. My dear husband was with me, very apprehensive. My two daughters, ages 45 and 50, were on tenterhooks about the possible diagnosis.

My surgeon was very capable, but not especially sensitive. He walked into the room and announced, “Well, it is cancer, and we will be doing a modified radical mastectomy.”

I wasn’t surprised, but I was speechless. I had expected he would slide into the diagnosis and discuss options. But my sweet husband, in utter shock, sputtered, “But, what will they put in its place?”

Now I found my voice. Quite firmly I said, “Nothing!” It’s funny that the initial discussion was about reconstruction rather than than the procedure itself.

The doctor assured him reconstruction could be done at the same time as the surgery, and they surely had enough fatty tissue to work with. But they also would need to reduce the size of my other breast, so they would match. My surgeon said, “You wouldn’t want an 18-year-old reconstructed breast next to a 73-year-old one!”

I again reiterated that there would be no reconstruction, as I wanted nothing to do with moving around any more tissue than necessary, and certainly not a surgical attack on the other breast.

All this of course was right before Christmas, with its usual full slate of activities and long to-do list. Again, I didn’t have time to stress, and didn’t. There was not a tear shed by me, or even any feeling of anxiety.

Surgery was scheduled for Dec. 30, and I was home the next day. A lovely way to start the New Year, but we had some remodeling scheduled for the kitchen and dining room, and we went right ahead with it, so I had plenty to keep on my mind beside my healing process.

The healing process actually wasn’t as smooth as the surgery itself. Fluid under the skin kept building up, even with the “ticks” in place to drain it. I had to have more installed, and when the skin eventually adhered, it developed a deep fold.

I was really upset by that. I complained to my surgeon that there very well could be pumas in that crevasse. He looked at me like I was nuts; he was too young to remember the Smothers Brothers. (For readers also too young to remember, they had a hilarious routine, the punch line was, “There are pumas in the crevasses.”)

He offered to do a correction, but I thought not. I did some research and found a plastic surgeon willing to do surgery to modify the scar area. It is strange that Medicare and insurance companies are more willing to pay the higher price for reconstruction than a much simpler scar modification, but I found one, and he did a wonderful job.

So, Amy, it is probably just as well I didn’t get to accompany the group to Iceland. I would really have gotten some stares with my original, now 76-year-old breast, and a nice, smooth, flat surface on the other side.

But I am happy with it, my wonderful husband doesn’t have any problems, and my clothes work just fine with my store bought silicone gel boob. And, most importantly, I am into the fourth year, all clear.

Oh Baby! Do We Dare Go For #2? (Part I)

Theo, October 2005, age six months

Ever seen that list that shrinks pull out when you’re stressed to the max? It’s about the length of a medieval scroll and on it is the list of life’s biggest stressors — the ones that probably landed you on the couch in their office in the first place.

There are the life events that you can’t control — like the serious illness or death of someone close to you. Then there are the ones that you can control, the ones that are considered “happy” stressors — like getting married, buying a house, getting a new job — and yes, having a baby.

If the thought of becoming a parent has ever seriously crossed your mind, you are familiar with the barrage of questions that filter through your gray matter day and night — particularly when you can’t sleep. Or perhaps they’re the reason you’ve got insomnia.
Will I be a good parent? Can we afford it? Does this new creature come with an instruction manual?

When you’ve been identified as a carrier of a breast cancer gene (BRCA 1 or BRCA 1), there’s a second list of questions you have to answer — even more so if you’re a survivor. At the top of the list is this one:
Could a pregnancy trigger a recurrence?

When my sister, Julie, who was diagnosed with breast cancer at the age of 26, posed this question post-treatment, the doctors felt quite confident that it could — and discouraged her from considering the idea. But that was twenty-some years ago, and a lot has changed.

Conventional wisdom — based on the brave women who not only went on to have babies post treatment, but volunteered for medical research studies — tells us that survivors who go on to have a baby do not have a higher risk of recurrence than those who don’t. In fact, for some reason that the medical community cannot put its finger on, these women actually have a slightly lower risk of recurrence. Go figure. If you want to find out more, check out the study:

http://www.thebreastsite.com/breast-cancer/pregnancy.aspx

So, we have the answer to the first of many questions we need to answer, with brutal honesty, before we make our decision. Next up is perhaps the toughest question of them all:
Is it ethical?

Innies or Outies?

My three-year-old son's belly button. Definitely an Innie...

Here’s a question I thought I’d never have to answer again once I left the gradeschool playground — Innies or Outies? That was the question at recess on days when the swings and the monkey bars had become a little too hum-drum. Not only did you have to declare yourself as one or the other, but you had to prove it by lifting your shirt and showing your belly.

It was a little like Dr. Suess’s story of the Sneetches — a group of yellow, beach-dwelling creatures who distinguish themselves from one another by the green stars on their bellies. Those with the green stars are part of the “in” crowd while those without…well, I need not go any further — I’m sure you remember the wrestling for top dog that is just a part of growing up. And, like cooties and indoor recess on rainy days, when I moved on to junior high, I was happy to leave that part of my life behind.

Fast-forward to 2006. It’s a cool autumn day in November, two weeks before Thanksgiving. I’m sitting in one of the examining rooms at my plastic surgeon’s office, perched on the edge of the examining table, wiggling around and trying to get comfortable as I sit on a fresh piece of the ever-present roll of crinkly white paper.

“You’re going to need to decide whether you want innies or outies,” he says to me as he’s looking over my paperwork. About 30 seconds pass before he realizes I am sitting there in stunned silence (he has known me long enough to realize that silence is not something I’m known for). He looks up at me over the the top of his glasses.

“You know, innies or outies,” he says, pointing in the general direction of my breasts in way of explanation. I look down at them. They are only partially covered by my ill-fitted gown. I finally realize what he’s talking about. My nipples.

“Innies or outies?” I say quizzically.

“Yes, you get to choose. But remember, whatever you choose — that’s the way they stay.”

So, that night at home, I broached the subject with my husband, Don.

“Innies or Outies, eh?” he said. “Hmm.”

“What do you think?”

We debated the pluses and minuses of Innies and Outies but in the end, it was clear the decision had to be mine. Choose Innies and I’d have the freedom to forego bras at my leisure –because (BONUS!) fake boobs never sag. Choose Outies and they’d look more “real” — but I’d have to cover them or they’d poke through the light-weight fabric of summer tank tops. Though that seemed like a bit of extra trouble, truth was, I wanted my new breasts to be as close to their predecessors as possible. And so, I chose Outies. And though I often look down, I’ve never looked back.

A Simple Cup of Joe…

Translation: I Don't Speak Icelandic

It was late May, 2006, and I was caught in early morning rush hour, bumper to bumper with dozens of other commuters, waiting for my turn at the expressway on-ramp. Traffic was at a standstill, and as I looked around, I noticed that the people in the cars around me were, well, unhappy. They were frowning, or shaking their fists at other drivers, or just plain bored. Not me. This was one of the happiest days of my life.

A little over two months before, I’d been diagnosed with breast cancer. The doctor told me at that time that I likely had less than five years. My husband and I — parents of a then six-month-old baby — lived in the shadow of that diagnosis until further test results showed that my cancer wasn’t as advanced as initially thought. Six weeks earlier, on Good Friday, I’d undergone a double mastectomy. I’d just finished going through in-vitro, so that I could freeze embryos for a future pregnancy. And the following week, I would start chemotherapy.

All this, and I was happier than anyone else around me, as far as I could see. In fact, I was beaming — I could hardly contain myself.

Why? The reason was really quite simple and yet profound, all at the same time. Because for the first time in nearly three months, I was doing something normal. I was on my way to work, to a client’s office, to finish a newsletter. I was caught in rush hour traffic, drinking my favorite coffee — Tim Horton’s — fixed my favorite way — double-double. All of it was so very ordinary. And that’s what made it so extraordinary.

Oprah says 50 is the new 30. I say ordinary is the new extraordinary.