Hello, everyone!  Exciting news – we’ve moved this blog to www.previve.com!  On the new website you can find not only my blog but also tri-weekly webisodes, so you can follow my story in real time as I prepare for and recover from my preventative double mastectomy and breast reconstruction.  There is also a venue for women and men of all ages to share their stories of previval!  So please visit our new site and feel free to share how you’re overcoming barriers and choosing life!  Love to all! xoxo Claudia


Since the day I got my drivers license, I’ve always looked forward to my 25th birthday.  Sure, 18 was a pretty big deal because I could vote or, if I did wrong, be thrown into prison.  And 21 was a big feat, for obvious reasons.  But at 25 society would finally initiate me into the adult community.  On March 21, 2012, I could rent a car, which is the final rite of passage in this country.

Then I tested positive for the BRCA-1 mutation.  Suddenly my 25th birthday meant so much more, because I would need to begin my cancer screening and become more of an adult than any of my healthy Hertz-renting friends and family.  At 25 years old, doctors recommend BRCA-1 and BRCA-2 women receive regular mammograms and MRIs.  We’re supposed to alternate the mammogram and MRI every six months until we catch cancer early, decide on preventative surgery or just continue screening and pray to be among the lucky few in the BRCA community who squeak by in life cancer-free.

To set things into perspective, the American Cancer Society recommends the average woman begin getting annual mammograms at age 40.  I would have already had 15 mammograms and 15 MRIs by that point.  Heck, I could probably give myself a perfectly good mammogram blindfolded by 40 years old.  I’d be a pro.

But I’m not willing to take any more risks – my risk is high enough.  I don’t want to screen and screen, waiting to pull out the big guns until cancer rears its ugly head.  I can’t imagine anything more terrifying than a cancer diagnosis, even if it’s a “good” one with a hopeful prognosis.  I’d rather bypass all the extra doctor appointments, potential false negatives and biopsies, and all the extra medical bills.

Anyway, all of this seems so burdensome and scary enough on its own, I don’t even want to think about what it might be like with children on my plate.  If I’m blessed to be a mother one day, I don’t want to  worry about murky test results, biopsies and the threat of cancer always lurking, threating to take me away from my babies.  When I bring new life into this world, I want to completely immerse myself in the experience and not constantly worry about my time with my children being cut too short.

So when I decided to have a mastectomy and met with my breast surgeon, Dr. Shawna Willey, she sent in orders for me to have a mammogram and MRI.  Dr. Willey wanted me to have these screenings done whether I wanted a mastectomy or not, but ideally they needed to be done about six months prior to surgery.   Since I’m planning to have my mastectomy in January, six months out meant July!

The mammogram would be my first and only, as I’ll never need one again after my surgery.   I was excited for the experience, so I could relate with other women, but nervous for doctors to take a peek inside my breasts.  Up until July, physicians had only performed manual breast exams during regular check-up appointments.  No one had ever looked inside to see what my breasts could reveal.  I was really scared that I would be opening a can of worms with these screenings, especially with the very clear and detailed MRI imaging.

On Thursday, July 8th, I arrived to Georgetown University Hospital in the wee hours of the morning for my 7am MRI.  I had friends with me, holding my hand and documenting the entire experience.  I was also the first appointment of the day, so no one else but myself and my crew were in the waiting room.  Then a petite woman peeped through the sliding doors and called my name.  It’s show time.

Here's an image of my body from my first MRI! You can even see my lung (the black mass behind my breast) and my rib cage. Pretty wild!

After I changed, the technician quickly injected an IV into my right arm – she did it fasterthan anyone else before!  This was a really good thing, because I’m not fond of needles.  Then she walked me over the the machine, gave me some headsets with NPR Morning Edition playing faintly through the headphones, and slid me in.  The imaging lasted about 20 minutes, and it was very loud!  So much for National Public Radio.  Since the appointment was so early in the morning, I was pretty exhausted, and the loud hum of the machine lulled me to sleep.

Then it was over!  The technician pulled me out of the machine and gave me a big bear hug.  Out of curiosity, I asked if I could see some of the pictures, so she led me to the back room and clicked through the album, revealing my lungs, ribs, stomach, heart, and, of course, my glowing breasts on the computer screen.  How surreal to see all my body parts and to realize just how foreign of an object my body really is to me.  But there I was, pieces of me I’d never seen before, glowing on the computer screen.

This is an image from my mammogram. The white shows where my breast tissue is dense, which appears to be all over! To me, my breast looks like the Northern Lights or a reflections at the bottom of a pool on a happy summer day.

The very next day I arrived to Georgetown University Hospital again for my mammogram.  This appointment was a little later in the morning, so I showed up around 8am to fill out even more paperwork.  When the technician came for me, I immediately recognized her  young, smiling face.  And this woman remembered me from when I used to volunteer at Georgetown’s breast health center, where I had come this July morning for my screening.  It was great to see a familiar face, but I know she was surprised to see mine as her patient.

My friend lead me into the room with the mammography equipment.  She positioned my breasts three different ways, snapping quick pictures while my breasts were squeezed in each position.  I’ve heard women gripe and gripe about mammograms since I was a little girl, so I was expecting the worst.  Sure, it didn’t feel great to have my tender breast tissue pressed tightly between the cold  equipment.  It wasn’t comfortable but nor was it excruciating.  And, even if it did phase me, the entire procedure was done before I knew it, lasting just a few short minutes.  Then that was that!

I returned to the waiting room afterwards and fidgeted in my seat while the radiologist read over the mammography images.  Out of no where, the doctor suddenly appeared, and dictated my results.  I had trouble understanding the young doctor, her accent was very thick, but she was smiling very big.  So it couldn’t be too bad!  Sure enough, the doctor handed me a sheet of paper with the box checked off for “normal”.  Phew!

A few weeks later, I received my MRI report in the mail.  I anxiously peeled open the envelope and ripped out the letter.  There were a lot of big words like “breast parenchyma” and “fibroglandular stroma”, but then I finally got to the English.  It read: “MRI findings…demonstrate no abnormal enhancement in either breast to suggest malignancy.”

Praise Jesus!  All this worry, and they’re still healthy.  The doctors won’t need to remove cancer with my breasts.  So long as breast cells remain the same over the next few months, I will be able to say that I actually defied my destiny and previved, not survived, breast cancer.  I can rest easy at night knowing that I did everything in my power to do the most with knowledge given to me by my grandmother.

Though she battled breast cancer and died from ovarian cancer, I don’t have to do the same.  Sorry BRCA, something else will need to take me out of this world, because it won’t be the same cancer that haunted my grandmother and never let her go.  She went through with genetic testing so that we may be set free.  Now I’m honoring that last selfless act and all of her sacrifice by releasing myself from the shackles of hereditary breast cancer.  I can’t wait for that freedom and all the courage that will come with it.  Is it January already??

Too much time has passed since I last wrote. I’ve made some big decisions, met some incredible people, and lived some remarkable experiences. Where do I begin??

About six weeks ago, I met with two different teams of breast and plastic surgeons, who had been referred to me by my girlfriends, all pleased as punch with their new, beautiful cancer-free breasts. The first team was in New York City at Memorial Sloan Kettering Cancer Center. I couldn’t sleep one wink the night before my first consultation. I felt like an over-anxious five-year-old on Christmas Eve, awake all night with too much excitement and anticipation. By the time my alarm sounded at 5:30am, I jumped out of bed, threw on my pink wardrobe, and was ready to go within minutes. The day had finally come when I’d meet with a breast surgeon and discuss how a sharp metal scalpel could release me from the shackles of hereditary breast cancer. I want nothing more than to be set free, and this doctor held the key.

The doctor greeted me with a big, warm smile and a firm handshake. I was afraid she’d look at my young face, grimace and begin drilling me on my decision. But she never questioned me, not once. In fact, this esteemed breast surgeon said it made perfect sense so long as I felt comfortable. I guess comfortable is one word for it. Ecstatic, anxious, eager, and excited are word that constantly fill my mind.

Signing my consent for a double prophylactic nipple-sparring mastectomy. How good it felt to make this decision for myself, on my own terms, without cancer breathing down my neck. What an empowering experience to save your own life!

And that morning I felt so comfortable that I eagerly signed off my consent for the surgery the minute she left the room. January 10, 2010 would be the day when I’d wake up from a four-hour surgery, still groggy from anesthesia, and realize that I’d done it. I’d beaten off breast cancer before it ever had a chance to rear its ugly head. I can only imagine the pride that I’ll feel, knowing that I saved my own life. I’m smiling just thinking about it!

The following week my mother and I met with a breast and plastic surgeon at Georgetown University Hospital just to get a second opinion. I live only minutes from the hospital and used to volunteer in the breast surgeon’s office, so I figured it was worth a shot.

It was love at first sight. Dr. Shawna Willey had me the moment she walked through the door. As Director of the Betty Lou Ourisman Breast Health Center at Georgetown University Hospital, Dr. Willey has a fair amount of experience as a breast surgeon underneath her belt. In fact, she performs well over 100 mastectomies every year, and a decent number of these surgeries are preventative. Dr. Willey spent nearly an hour with me, discussing the different types of incisions she could make, the types of tissue she would be removing, and the setbacks and advantages to keeping my nipples.

My nipples was a sensitive topic. When I first decided to have the mastectomy, I figured I would remove my nipples because, heck, I might as well. If I was going to carry through with such a radical procedure with the sole purpose of reducing my risk, I should reduce every last bit of it that I possible could. I felt that by keeping my nipples, I would leave behind too many breast cells that could later turn on me with a vengeance.

Me meeting with Dr. Willey's *incredible* nurse at Georgetown University Hospital before the consultation with the surgeon. I was already loving the staff and their impressive expertise, as well as their doting attention!

But both the New York breast surgeon and Dr. Willey encouraged me to give my nipples a second chance. Dr. Willey said that she used to never allow her patients to keep their nipples, that the nipple-sparring procedure was at first considered blasphemous in the medical community. But she’s done her homework over the years and feels that it’s a perfectly safe, acceptable option, especially for someone as young as myself.

When Dr. Willey presented the case for my nipples, I felt nothing but relief. I was willing to remove them and reconstruct a new set, but I really grieved the thought of parting with them. Unlike my breast tissue, my nipples have always been with me, even as a little girl. By removing them, I was making one more sacrifice to this battle against my genes. I was willing to do it, but it made me happy to think I could keep this intimate piece of me and still sneer in the face of breast cancer. Hah!

The plastic surgeon, Dr. Spear Scott, was equally impressive. Dr. Spear spent another hour with me, drawing on my breasts, showing me the incisions he could make and the reconstructive benefits of each. The incisions the doctors make at Georgetown University Hospital are slightly larger than those made at Memorial Sloan Kettering in New York. But I’m not willing to risk it, seeing that I have enough risks already. If Dr. Spear thinks he needs a larger incision to get out as much breast tissue as possible then that’s what we’re going to do!

This was the first time I had seen and felt a silicon implant – the same kind of implant that may eventually give me breasts again!

Dr. Spear also discussed a few of my options for implants. Here’s the thing, I want my breasts to pop afterthis. If I’m going to remove my breasts and endure months of reconstruction, I want the sexiest, perkiest boobs in the market. They may look fake, but that’s because they will be. I’m not one to put on pretenses anyway. I can’t wait for the final product!

Now I’m left to wait. Dr. Willey and Dr. Spear’s offices do not allow anyone to schedule surgery until it’s at least three months out. Since I will have the surgery in January, I have a good three months to wait until I can mark a date on my calendar. In November, I’ll meet with both doctors again just to solidify plans and procedures. Then it’s show time.

I wonder how I’ll feel in those few remaining months leading up to the surgery. How will I feel as I walk into the operating room and lay myself down on the table? How will I feel when I wake up to realize that I’ve actually been set free, that I’ve defied my destiny and can go on living my life? How will it feel to be normal, like so many other women, and not live with breast cancer constantly looming in the near distance? How will it feel to rescue myself and become my own greatest hero? Will I ever be afraid again? Will I live my life differently, more courageously and boldly?

I think the greatest gift that we can give in life is inspiration. It’s the gift that keeps on giving. And, through this process, I’ve inspired myself on so many occasions to take that risk, go on that date, create new relationships, and to keep dreaming big, because I choose life.

A few weeks ago a young woman found me on facebook.  Somehow, she saw my blog.  And, for some reason, she decided to read it.  At 27 years old, Jodi Kreizer was about to have the last surgery in her breast reconstruction.  Jodi later told me that she never clicks on the links that pop up on her facebook feed.  But once my story appeared on her screen, she felt compelled to reach out to me.  And that’s just what she did.

Jodi Kreizer - what an incredible woman!!

The next morning I awoke to find a new friend request, the photograph bearing a beautiful young woman smiling luminously in her wedding gown.  I did not recognize the name from Pete, so I investigated a little further.  I noticed that Jodi’s status mentioned her upcoming exchange surgery, the last procedure in reconstruction after a mastectomy.  Okay, I thought, this woman has to be my friend, not only in the cyber world of facebook but also in real life.

A few emails later, Jodi and I scheduled a phone date so we could get to know one another better.  It was a warm Monday evening in early April, and I darted over to the gym after work to squeeze in a run before the big call.  I only know a handful of young women my age who have had the surgery, so it’s a big deal when one more woman comes your way and is eager to share her story.  And there was something about Jodi that seemed particularly special.  If I only knew.

From the minute I heard her voice, I could tell that this woman was going to become a dear friend and one of my greatest mentors.  Jodi’s sweet, soothing tone took hold of me as I walked up 33rd street back to my house.  I’m not sure if I was more flushed from my recent run or from speaking with a woman who knew exactly what it’s like to walk a mile in my shoes.  In fact, she’s a few miles ahead of me and was telling me what to expect every step along the way.

Oddly enough, it seems like I’m always wearing sweaty gym shorts when life-changing moments take place.  I was leaving the gym two years ago when I got the phone call that would forever change my life.  “You’ve inherited your grandmother’s mutation,” my genetic counselor said in a quick, hushed voice.  But don’t worry, my counselor said, just keep living your life and try not to think about it for a few years.  After all, I’m so young, she reassured.

That voice has haunted me ever since.  How am I supposed to forget and keep living?  Shouldn’t I take advantage of the fact that I’m young to do something powerful with this new knowledge?  Why should I let my youth act as a barrier to being proactive about my health?  I hadn’t up until this point, why now?  Whether I liked it or not, everything had suddenly changed.  And I knew this as I wobbled home from the gym on my bicycle, trying desperately to keep balance of my life.

And here I was again, in tightly laced tennis shoes and sweaty mesh gym shorts.  I should have known that I was in for something big.  But this time the voice on the other end of the phone spoke with confidence, grace and hope.  Unlike the phone call two years ago, each word she spoke energized me more and brought me greater clarity and focus.  A divine hand definitely had a play in bringing us together.  By the end of our conversation, I knew once again my life had changed.  But this time I could not be more excited!

Just two days ago, I got to finally meet Jodi in person.  I’ve been in New York City for my upcoming consultations tomorrow with a breast surgeon and plastic surgeon at Sloan-Kettering.  I thought Jodi and I would miss one another, because she had planned a vacation with her husband to celebrate their first wedding anniversary and her full recovery from surgery and reconstruction.  Unfortunately, work came in the way, and Jodi had to stay home this weekend.  But, secretly, I was thrilled!  I could finally meet the voice that has guided and inspired me over the past few weeks.

My mother and I woke up early on Saturday morning to drive from New Jersey into New York City’s Upper East Side to meet Jodi at her apartment before heading to brunch.  After a few wrong turns, we finally arrived.  I was so nervous, as if I was about to meet up for a long-awaited blind date.  It was a little cloudy in the morning, but as my mother and I walked up to her apartment building the clouds started to disappear.

We took the elevator up 15 floors and found her door at the end of the hallway.  When we pushed the buzzer, the door whisked open and there she was!  Jodi was even more beautiful in person, if you can believe it.  We immediately threw our arms around one another and embraced as if we’d known each other for ever.  Jodi’s warm, dark eyes bespoke her generous, gentle spirit.

My mom was also captured by her presence the minute they met.  Even though my mother was pretty confident for me beforehand, Jodi had a tremendous impact upon her right from the get go.  To see a young woman, nearly my age, who has made it through surgery and reconstruction made a world of a difference for my mom.

Jodi is not only thriving but incredibly happy.  She has a great job, a loving husband, and – might I add – an amazing rack!  When Jodi lifted her black tank top above her chest, I could see the relief and amazement cross over my mother’s face.  Jodi has practically very little scarring and a very natural breast shape.  If my breasts look like Jodi’s afterward, I know I’ll be the envy of countless women.  As my mother later told my aunt, “You should have seen them!  I think we should all get a set!”

We soon left for brunch and settled down at an Italian restaurant around the corner on 2nd Avenue.  It seemed appropriate that the restaurant had a bright pink awning, bright pink to-go cups, and bright pink dishware.  We sat at a small white table on the sidewalk under the pink shade of the awning.  Jodi sat across from me, smiling over with her big brown eyes.  The three of us shared stories for nearly an hour until finally we had to get the check and carry on with our busy days.

Before we said goodbye, we made arrangements to meet again for dinner tomorrow night.  Joining us will be my mom, my aunt, my PinkPal through Be Bright Pink (Tovah Tripp), and her mother.  After corresponding for a year and a half, Tovah and I just met last week (I’ll be blogging about this epic encounter soon!).  Tovah is 24-years-old and carries a BRCA-2 mutation, so Be Bright Pink paired us up in January 2009 to become mentors for one another as we struggle to make sense of our risk and find the best way to counteract it.  Anyway, I’ve been looking forward to this dinner.  I can’t wait for Tovah to meet Jodi.  Considering the lasting impact Jodi’s made upon me, I am excited to see Jodi’s incredible influence continue to spread and grow throughout the young BRCA community.  Her courage is truly infectious, and I owe much of my strength to her.

It’s women like Jodi, Lindsay and Kristy who are my heroes – including those in my blog who I’ve described but left unnamed.  These women live out the motto actions not words and provide real, tangible inspiration for girls like myself.  At a very young age, they’ve encountered some pretty scary things.  Instead of fleeing, sticking their head in the sand, and pretending that ignorance is bliss, these women tackled their genetic mutations head-on.  They’ve demonstrated, role modeled, exactly how to do this for other young women in the BRCA community.  They’ve proven that a BRCA mutation is the greatest blessing rather than the greatest burden.

I hope I can be as bold and fearless for my PinkPals, like Tovah and Rebecca, and for my two little sisters, Josephine and Alice.  I know for a fact that I couldn’t brave this path alone, not without the guidance of others who have blazed it before me.  Thank you, Jodi, for showing me the way!

Meeting courageous young women, survivors and previvors alike, is by far the best part about testing positive for my BRCA1 mutation and deciding to have a mastectomy. Before I got that phone call in September 2008 with the grim results, I never knew that so many young women were out there courageously defying their destinies everyday and paving the way for others, including myself. While I was studying and going to parties, living the life of your average American college student, young women were finding out about their gene’s dangerous secrets and taking brave steps to make sure they have every chance at a long, fruitful life like everyone else. Little did I know that I would soon be in their presence. And what a presence it is!

Among these brave women is 27-year-old Lindsay Avner. A few short years ago, she founded Be Bright Pink, the only national non-profit organization that provides support and outreach specifically to young women at high risk for breast and ovarian cancer. Let me put it this way: To me, this lady’s a bigger rock start than Bon Jovi or Bruce Springsteen. Lindsay tested positive at a point when few other young women even knew about the mutation, let alone went under the knife to counterbalance a dangerous predisposition to cancer. But Lindsay did not want to mess around after watching her mother, grandmother, great-grandmother, aunts, and cousins battle breast cancer. At 23 years old, she volunteered to have a double prophylactic mastectomy with reconstruction. With no support network designed for young, single women, she decided to take matters into her own hands once again. Thanks to her energy and ingenuity, Be Bright Pink has united hundreds of young women across the country and spread the word on BRCA to millions of Americans. This woman is my hero.

Despite her crazy schedule, Lindsay and I have been writing back and forth since I learned about my test results in late 2008. She’s been right there whenever I need her. I’ll even get emails back from Lindsay in the wee hours of the morning, because she wanted to follow up and recommend just a few more contacts or a few more resources.


Ali, Lindsay and me after a big, delicious dinner in the nation's capitol

Well, just a few weeks ago, I finally met Lindsay in person! It was such a surreal experience to see her walking towards me, to give her a huge bear hug and to catch glimpses of her smiling over from across the dinner table. It was a warm evening in Washington, D.C., so we decided to eat outside at a restaurant near Union Station with the Capitol looming off in the near distance. Lindsay wore a thin, low-cut black cotton dress that flattered her breasts very, very well. Not even a surgeon would have noticed that this stunning, healthy young woman had a mastectomy. Wow, I thought. If she can look this smoking good then so can I.

To be honest, I was so nervous for our dinner, which I had marked in my calendar for weeks. What would she be like? What would she think of me? I tried to keep it cool, slipping in smart and witty comments when I could. Then my true colors slipped through when dessert arrived. I’m helplessly clumsy – physically and even intellectually at times. Some have called me a space cadet. Either way, I knew things weren’t going to be pretty when Lindsay and I decided to share the same dessert. After a few bites, it looked like I basically rolled around in our hot fudge brownie sundae like a pig in the mud on a hot day. I tried to maintain the skilled table manners that my mother attempted to instill in me, but I finally threw three sheets to the wind when the chocolate sauce made it from my plate to my sweater and eventually to my lap. I’m glad Lindsay got to meet the real Claudia. And I’m glad she liked me, chocolate-covered and all.

It’s women like Lindsay who make me proud of my genetic makeup and proud to be apart of the young, vibrant BRCA community. We are so full of life, because we know just how precious it is. We have been forced to come face-to-face with our mortality long before many of our contemporaries. But rather than shying away in fear from our BRCA mutations, we’ve learned to embrace mortality and milk it for all it’s worth, not wasting a single drop. Lindsay’s passion for life shines so brightly, showing the way for other young women on the path to defying their destinies. While there are times when it is difficult to recognize the consequences of carrying a dangerous mutation in every single cell that gives me life, the fact that this mutation brought me to Lindsay and other young women in the Bright Pink family makes it all so worth it.

Lindsay, I love you. Thank you for everything.

The past month has been a whirlwind of incredible experiences and varying emotions. For a few weeks I completely immersed myself in spending time with my family and friends, only thinking about my mastectomy a handful of times. In fact, I nearly forgot about the big life changes heading my way. But just a few days ago, as I was walking the streets of Georgetown on a beautiful sunny afternoon, the word “mastectomy” flashed across my mind and stopped me dead in my tracks. The sun continued to shine, the cars and pedestrians were still buzzing past me under the shade of the fresh, new summer leaves. I had to catch my breath and grasp, once again, the fact that my life is about to drastically change. How could I forget??

I’ve tried to downplay the significance of my surgery to myself, my friends and my loved ones almost to the point that the word “mastectomy” seems too formal, too drastic. I’ve felt that this word gives people the wrong impression. Before I tested for my mutation, I assumed “mastectomy” meant scary, jagged scars that left a woman flat-chested and formless forever. Since the surgery is so different today, I’ve tried to think about it differently and describe it differently. Don’t worry, I say, I’ll keep my curves! The doctors are just going to carve me out like a pumpkin and replace the cancerous goo and seeds with pretty implants. Out with the old, in with the new. But at the end of the day, I’m still having a mastectomy. There’s no getting around that word and the seriousness that comes with it.

On Saturday evening, I was reminded why I must have a preventative double mastectomy now, at 23 years old. I attended the Tigerlily Foundation’s 2nd Annual DIVA Night Out, which was a fund-raising gala to support young women before, during and after breast cancer. Maimah Karmo, founder of the Tigerlily Foundation, was diagnosed with stage II breast cancer at the age of 32. When Maimah found the lump, she was in shock and denial. Her doctor told her not to worry, she was too young for breast cancer. Come back in six months, he said. When she returned, the doctor continued to ignore the symptoms and told her to wait another six months. But this time Maimah insisted upon a biopsy. And, sure enough, the doctor was wrong. It was breast cancer, and it had already developed past the beginning stages.

Me and Kristy at the gala!

I attended the gala with my good friend, Kristy Hernandez, who is a breast cancer survivor herself. When she was in her first year of law school, at the mere age of 24, Kristy was diagnosed with this disease. Just like Maimah, Kristy also encountered ignorant doctors who downplayed her very clear symptoms. After all, they said, young women do not get breast cancer. All of these doctors are really starting to sound like a broken record.

Unfortunately, Kristy and Maimah were among the 11,000 women under the age of 40 that are diagnosed with breast cancer every year in the United States. On a broader scale, more than 250,000 women age 40 and under will be diagnosed with breast cancer during their lives. To make matters worse, young women often have more aggressive forms of breast cancer that carry higher mortality rates. It doesn’t help when doctors repeatedly tell young women not to worry, young women don’t get breast cancer, so just ignore the lump and come back in six months (!!!)

On Saturday, the survivors were given pink feather boas so they could fearlessly show off their courage and their youth. Everywhere I saw young, beaming faces framed by these soft pink boas. White women, African American women, Latina women, you name it – a young lady from every background had feathery representation. Breast cancer does happen to women my age. Even though it’s still pretty rare, it happens to young girls every day, every year. With my BRCA1 mutation, I could very well be the next diagnosis. Too bad, cancer, I got a heads up. I intend to act before you ever get a chance to, and I intend to act now. No one can tell me I’m too young to do this.

In the meantime, I don’t know how I’d be able to go through any of this without my dear, dear friend Kristy. After her cancer diagnosis, Kristy learned that she had also inherited a BRCA1 mutation from her father. But she took this all with a grain of salt and battled the cancer ferociously. After the chemotherapy, radiation and partial mastectomy, she continued with her school work and will now graduate from law school in two weeks. Kristy is absolutely one of the bravest women I know.

Needless to say, I’m beyond blessed to have her as a friend and role model. Along with the other young women who have shared their stories and bodies with me, Kristy is also my inspiration. Like my grandmother, Kristy has shown me that life is too precious to risk for anything. We must take it by the horns and show this nasty cancer who’s the boss. We’re too young to be sick and far too young to die.

Since I’m the oldest in my family, there was no older sister or mother to pave the way for me, to show me how to brave this battle with grace and undaunting courage. Kristy has filled that role for me. I hope that I can one day be as strong, bold and beautiful for my sisters, as Kristy has been for me. I hope I’m already their Kristy.

On May 8th, I’m running in my first race! And for what better cause than to fight ovarian cancer, which is the deadliest and hardest cancer to detect in women. After five relapses, my grandmother passed away from this brutal disease in June 2007. And I have her genes.

To be honest, it didn’t really surprise me that I inherited her defunct BRCA1 gene. I’m really my grandmother in more ways than one. Just like myself, she was always so gullible to pranks and bad jokes of any nature. “See those chickens over there?” asked a friend once as they were driving by the Mexico border many years ago. The woman pointed out a family of scraggly, dirty chickens hopping along the side of the road. “Well,” she said, “they’re some of those crack-sniffing chickens!” My grandmother gasped, “Really?!?” She, like myself, could be so embarrassingly blonde.

I also have her breasts and ovaries, in a sense. Sounds kind of weird, but I feel so connected to my grandmother through these parts of my body because I know they’re made of the same stuff, the same common genetic thread. But our shared BRCA1 gene left her lady parts (and mine) completely defenseless to cancer. That is why she had breast cancer at 60 and ovarian cancer almost too many times to count.

To get technical, my BRCA1 mutation means that I carry up to a 54% risk of developing cancer in my ovaries, the single most defining part of my femininity. I’m all too familiar with 50/50 chances. Since my dad tested positive for his mother’s mutation, I knew that I had a 50% chance of also inheriting the gene that killed my grandmother. It was a coin toss. And the odds did not turn out in my favor.

I’m not willing to take risks like this again. I have enough risks already. So I’m going to lace up my bright pink running shoes, ready to bolt at the sound of the gun. I’ll be racing for my life.

In the meantime, however, my breasts remain my number one priority. The plan still holds to have them removed and exchanged for new saline boobs by the end of the year. I’m still researching doctors and setting up consultations with surgeons in June. Last month, June seemed forever away. Now it’s almost next month! Since I’ve made up my mind to have the preventative double mastectomy, I wish I could fast-forward through the next few months to the point when I’m wearing the thin hospital gown, feeling the anesthesia take hold as I lay on the operating table awaiting my new cancer-free breasts. I can’t wait to have a surgery date to mark in big, bright, bold pink letters on my calendar.

Since beginning this blog, I’ve come into contact with so many wonderful women from across the country. Last Monday night I received a phone call from a 27-year-old woman in New York City who recently had the prophylactic mastectomy and reconstruction. “Claudia, once you decide to have the surgery, just do it!” she said in the sweetest, most compassionate voice. Four months out from surgery, my new friend could not be happier with her new body. Last year she married the man of her dreams, and now she lives with the reassurance that her marriage will not be cut short due to breast cancer.

My new friend shared her experience of surgery, recovery and reconstruction with me in full detail, as I insisted. She changed doctors at the last minute after seeing a friend’s beautiful, round, perky breasts that just so happened to be entirely fake. After surgery, my new buddy awoke to find A-sized breasts. The surgeon took out everything inside and then the plastic surgeon inserted some hard, bumpy expanders. “They’re kind of like balloons,” she said. The reconstruction began immediately, and she was only flat-chested for a split second while still on the operating table. After four hours of extensive surgery, my friend emerged from the operating room with less than 1% risk of breast cancer.

Even though the medical crew left her a bedpan, she was able to creep along to the bathroom and do her business as usual. “The doctors wanted me to begin moving as soon as I was able,” my friend said. Within three days, she was out of the hospital. The doctors sewed drains to her chest wound to collect fluid, and she was able to remove them after 10 days. Three weeks after her surgery she was walking (carefully!) on the treadmill.

The three months of expansion were the worst part of the entire experience, she warned. The balloon-like expanders were rock-solid and bumpy, so her breasts did not look or feel like they would with the saline implants. The plastic surgeon would inject my friend’s expanders with more and more saline until her skin stretched enough to naturally hold the C-cup implants. Since I think I want to remain a C, I will probably go through the same expansion process as my friend.

Well, my friend said, this takes a lot of expanding! Before her exchange surgery last week, she was a double-D!!! I think I’ll tip over with those X-rated breasts. Hopefully I’ll look like a cartoon for only a week before my expanders are exchanged for the normal-size saline implants. However, for that week, my roommate already said I’m not allowed to leave the house. My best friend suggested I go to Vegas.

Doesn't Dr. Heerdt look so smart and nice? Maybe she'll be the one to save my life!

My new buddy also provided me with loads of incredible references in the high-risk medical field. Most of these doctors are in New York at Memorial Sloan-Kettering Cancer Center, one of the premier cancer institutes in the world. I’m meeting with her surgeon, Dr. Alexandra Heerdt, at 8:30am on Tuesday, June 1st. The next day I have a consultation with her plastic surgeon, Dr. Joseph Disa.

While I’m excited to see what Georgetown has to offer, some pretty divine signs are pointing towards Sloan-Kettering. First of all, Dr. Heerdt and Dr. Disa both take my insurance! Over the course of the past week, more and more women have sung this center’s praises to me. The founder of Be Bright Pink, Lindsay Avner, had her double mastectomy and reconstruction done at Sloan-Kettering. So did several of my other girlfriends in Be Bright Pink. They all have nothing but wonderful things to say about this center, the doctors, and the staff. I also like the idea that doctors like Dr. Heerdt and Dr. Disa have performed this procedure on so many young women. That’s really important to me.

Meanwhile, I am truly overwhelmed by the love and support of the young women with new cancer-free boobies who warmly reach out to me, bearing everything. My new friend even sent me photographs of her breasts during the different stages of expansion. Since she decided to keep her nipples, the only scarring she has is a barely-visible line circling the bottom half of her nipple. Through these slits, Dr. Heerdt took out most of the breast cells with bad BRCA genes, and Dr. Disa replaced them with the expanders. Now these tiny scars are so faint it would take a vigilant doctor to realize what took place. “You wouldn’t even need to tell a boy on a date that you have fake boobs,” she said, “he’d never know.”

Even though I’ve never met my new friend in person, she said she’ll come visit me in the hospital when I’m post-op. And this woman meant it. I know I’ll be seeing her beautiful, smiling face in the recovery room next to my long, white hospital bed. How incredible to have such a strong bond with women who I’ve never met. My new friend and I have only spoken on the phone for an hour, and I already feel like we’re sisters. As pre-vivors to cancer, all of us BRCA women are a band of sisters. And what better sisters – each so heroic, so courageous and so compassionate. I can’t thank you all enough for sharing your stories, your bodies and your love with me. I feel so blessed.

I could feel the tears coming on. I tried to fight the urge to sob, because I was in the middle of the metro during rush hour. This is no place to have a water works show. But I was reading Why I Wore Lipstick to my Mastectomy, and it just hit me as hard and fast as the trains breezing past me on the platform. While doctors won’t be cutting off my boobs, they’re cutting them out. I’ll wake up from surgery with two large wounds where my rack used to be. What will it be like to wake up from surgery and look down to see them gone? Within weeks I’ll have them back. But they’ll never be quite the same. The thought of saying goodbye to my girls, especially in those last moments, is all too painful sometimes. The thought of all those scapels is even more painful.

When my cousin picked me up at the metro, the floodgate broke loose. Once in the car, I started sobbing so uncontrollably it was hard to catch my breath. “Maybe you need more time to think about all of this?” Mary finally asked me. I think that’s it though. I finally am thinking about it. The magnitude of my decision just caught me a little off-guard around page 52 of my book while riding the red line train to Shady Grove.

I mean, I’ve had one wisdom tooth removed, and that was the only time I’ve ever been under anesthesia. The first time I had my blood drawn was for the genetic test! In high school, I used to cry so hard after a flu shot that it made the nurses uncomfortable. “You’re my first patient to cry today,” said the pediatric nurse, who had just seen a whole slew of toddlers. Needles of any kind have never been my friend, let alone scapels. How can I be brave enough to have a total mastectomy?!

Then I kept thinking some more. I want the doctors to also remove my nipples because they carry a high risk of breast cancer just like my breast tissue. But what will be come of my nipples? Will the hospital just throw them away? I don’t want to keep them, because I can’t imagine anything more creepy, but I also can’t imagine them in the trash. Where will my old breasts go?

There will also be tubes stitched to my chest to collect fluid for a few days after my surgery. It’ll hurt to breathe. It’ll even hurt if someone sits on the bed. I’ll probably need a bed pan, because I can’t imagine scuffling anywhere, not even to a nearby restroom. While all of this amounts to nothing compared to battling breast cancer, it still scares me to think of the surgical details. Is there anyway I can teleport myself to the last reconstructive surgery when all of the pain, blood and “wound fluid” will be behind me?

Since my boobs are always on my mind, I’m noticing the little things that will change or won’t matter once I have the surgery. For one thing, I’ve always worn skin-tight sports bras when I run. In middle school, someone told me that if your boobs bounce around too much during exercise then they’ll sag like an old woman’s rack. I did not, by any means, want saggy boobs by the age of 30. So I thought I’d plan for the future and cut off a little circulation in order to keep my girls perky. I guess I can loosen up on that one now.

Ever night before bed, I religiously take three delicious gummy bear vitamins, a nasty-tasting iron supplement, and my vitamin D-3. I keep all three lined up in my medicine cabinet like artillery. After all, I’m fighting to keep my health. Vitamin D-3 is the one I never forget, because it’s known to promote breast health (among many, many other things). This is one of my new power tools. With each white supplement I take every night, I envision it arming my breast cells with the defense they needs to ward off the cancerous enemy. And my maximum strength vitamin D-3 is my body armor. But since I won’t have my old breasts for much longer, I guess I can chuck the armor out the window pretty soon.

I also find myself starring at women’s breasts a lot. Totally weird, I know! But I just can’t help it. My breasts won’t have quite the natural curve like other women’s breasts. AlloDerm will help a lot. But there will still be a difference, one that only I will probably notice. In the meantime, I’ve taken to studying the boobs I see on the bus, on the metro, in the bars, at the restaurants, and even in church. I look at small breasts, large breasts, medium-size breasts. Everywhere I notice what I will soon no longer have.

After my surgeries, my boobs will look better than they do now. But I also love my current breasts. I’m trying to pay them tribute the best I can until the scapel comes to take them away. I’ll still wear a bra to work, but I’ve decided to retire my bra to the dresser for most other occasions. I want to feel my breasts and my nipples against my shirt, I want to know that they’re there. After all, I won’t have sensation anymore after the surgery. Luckily, I’m only a C-cup, so they’re pretty manageable on their own. Although, my sincere apologies to my friends and family, you may see more than you want over the next few months. It’ll probably only get worse after my mastectomy. I plan on flashing all the women in my life, so they can see what a mastectomy looks like. You can’t say I didn’t warn you!

I also think it’s a sign that you’re talking too much about your mastectomy when your roommate dreams that she looses her nipples and has to get them reconstructed. Rachel said they looked great, but I think I need to ease up on the boob conversation at my house. I also need to spare every poor, unsuspecting stranger the news of my upcoming mastectomy. The man swipping my membership card at the gym looked a little shell-shocked. So did the cabbie. I need to practice better censuring, so I’ll try to limit most of my boob ramblings to this blog. Although, Rachel, I was relieved to hear that your new nipples in your dream looked great. But you have better things to dream about than breast reconstruction, my sincere apologies!

My grandmother in 2005, before she became sick for the last time

The day before Easter, my aunt happened to find the DVD of my grandmother’s funeral. Its been nearly three years since I’ve heard the eulogy, the hymns, and the loving testimony my father presented. As she described me on the day of my birth, my grandmother was truly “major beautiful”. She was the first female Baptist minister in Dallas, the fourth in the state of Texas, and her love knew no boundaries or obstacles. She simply followed God’s calling, which upset a lot of people at the time. Eventually she had to join the Methodist faith in order to preach from the pulpit. And while her sermons were always moving, it was the way she lived her life and loved indiscriminately that changed so many lives, including my own. Memamma, as you used to ask the Lord, give me a double portion of your spirit.

Later in the day, I met up for dinner with a good friend from Be Bright Pink, a non-profit specifically designed to bring together young women at high risk for breast and ovarian cancer. My friend is nearly 30 years old, but she was diagnosed with breast cancer at 24 during her first year in law school. Talk about a shock! It was only after her diagnosis that she learned she had a BRCA1 genetic mutation and that her father carries the same genetic mishap.

After radiation, chemotherapy, and a mastectomy on her right breast with reconstruction, my friend is cancer free! Now she is planning to have the other mastectomy later this year, just to make sure the cancer doesn’t get a chance to strike again. That’s another down side to the BRCA1 mutation: we’re more likely to develop breast cancer in a second breast. That’s why genetic counselors will ask if there was ever a woman in your family history to develop breast cancer in both breasts – it’s generally a red flag for a BRCA1 mutation.

As my friend and I munched on our Whole Foods dinner, she shared with me her experience battling cancer and reconstructing a breast already plagued by disease and treatment. It’s difficult, she said, to reconstruct after radiation. The treatment makes your skin tough. As a result, her plastic surgeons replaced some of her radiated breast skin with a strip of healthy skin from her back. While she’s pleased with her surgeon’s work, she’ll be the first to tell you that a reconstructed breast after cancer looks very different than a reconstructed breast before cancer.

After dinner we walked around Old Town Alexandria and discussed our upcoming prophylactic mastectomies. In fact, she wants to have her surgery in November, around the same time I’m planning to have mine! We giggled about calling each other after surgery, comparing notes, and getting updates.

While we’re anxious to have the surgery, we realized that we share the same sorrow- the inability to breastfeed after a mastectomy. We’re both quietly grieving. It saddens us to think that we’ll never have the opportunity to share in this life-giving experience, one that is so primal and yet so feminine and universal. My friend and I are also health nuts (especially in response to cancer and learning of our BRCA1 mutations), and it is hard to accept the fact that our children might never have the irreplaceable nutrition of breast milk. Although, I’m still teasing with the idea of a wet nurse. I know the practice is a little outdated by a hundred years or so, but maybe there’s a way to at least get a friend to pump for me. Any volunteers? Hopefully I won’t need you for a few more years!

I also found it interesting that my friend shared another feeling of mine – we’re both far more reluctant to give up our ovaries. Breasts they can reconstruct, and now it is difficult for anyone but doctors to realize that a woman’s had a mastectomy with reconstruction. They can do that good of a job! But our ovaries, those are different. Life begins in our ovaries, and it’s these organs that truly differentiate us from men. I actually had the chance to see my ovaries during a pelvic ultrasound a few months ago. The experience was surreal, to be able to see the organs that make me a woman but are defenseless to cancer. I’ll have them removed by the age of 40, because I do not want to meet the same fate as my grandmother, but I’ll grieve every step along the way.

As for our breasts, my friend shared with me some exciting research in the field of reconstruction! The one setback with reconstruction after a mastectomy is that the implants don’t always look natural. Because surgeons have to scrape out everything, the silicon or saline implants sometimes look like they’ve just been tacked to your chest. In other words, there’s not a lot of natural curving, as seen in other women’s breasts. But researchers are hard at work trying to develop new ways to make reconstructed breasts look as natural as possible, as my friend related.

For instance, a lot of women now use a regenerative tissue called AlloDerm to help implants look more natural. I’ve heard nothing but good reviews, although I was little taken aback when I heard that AlloDerm is basically dead people’s skin. But if that’s going to do the trick then I’ll need to get over it. Still, it grosses me out, not going to lie.

Breast stem cell reconstruction

My friend also told me about cutting edge research in using one’s own stem cells to grow healthy, natural breast tissue. This new technique is known as Neopec, and it’s worked successfully on pigs so far. Basically, doctors insert a biodegradable chamber, like a scaffold, which will eventually disintegrate as a woman’s stem cells regenerate breast fat to fill the chamber. How cool is that?! The research originated out of Australia, so I wonder if doctors in the United States will also practice this procedure in clinical trials. Sign me up!

Another neat development my friend described is the creation of “gummy bear” implants. These silicon implants feel kind of like gummy bears, hence the name, but they feel and look much like women’s natural breasts. In gummy bear implants, the silicon particles hang together in such a way that allows for surgeons to form them to resemble a woman’s natural teardrop breast shape. Better yet, they keep their shape once implanted. Although, I have to say, a part of me is excited to have breasts that will never sag with standard silicon or saline implants. But I’d love to know if doctors could go back in a few years and trade out my implants for the gummy bear or stem cell version. Could they reconstruct the reconstruction?

My dad and his three girls

By the end of the evening, my friend and I realized that we both inherited our BRCA1 mutation from our fathers. While my friend and I love the support network established for us and other young women in the high risk community, it saddens us to see that there is essentially nothing for the fathers and sons in our families. Both of our fathers have struggled with the guilt of knowing that they’ve passed on a dangerous mutation to their daughters. My friend’s dad saw this mutation rear its ugly head in his daughter when she was diagnosed with breast cancer at 24. Our fathers now accompany us to doctor consultations and will walk us into surgery in a few short months. They, too, are feeling so much right now.

Since there’s no support network for men, my friend and I took initiative to create one for our fathers. Last night, we introduced our dads to each other through email, and hopefully they’ll be able to share stories, feelings and experiences as BRCA1+ dads of BRCA1+ daughters. If anything, I don’t want our dads to feel alone. Sometimes it’s just reassuring to know there’s someone else in your shoes.

In the meantime, my friend gave me the name of two women in New York City who she’s met through Be Bright Pink and who, she feels, may be able to help me along my journey. I hope to meet with them when I visit NYC for my surgeon consultations on June 1st. Both are accomplished young women who have already had the prophylactic mastectomy with reconstruction, and both could not be happier with the results. In fact, one woman recently had her first child, and I’m anxious to learn about her experience with pregnancy and as a new mother with reconstructed breasts.

Every time I meet with a fellow high-risk sister, I’m overwhelmed by their openness and eagerness to share their story with me. Over the past couple of weeks, I’ve even seen two women’s reconstructed breasts in restaurant bathrooms! Their courage is contagious and inspiring. I could never venture this journey without the foresight and advice of the brave women who have blazed the path for me. Give me a double portion of your spirit, BRCA sisters.

Judge Robert Sweet is my new best friend. Yesterday, this honorable man ruled in a federal court that the patent on my genetic mutation is invalid and must be dismissed. Basically, March 29th should be made a national holiday among the high risk community. Here’s the back story:

Our BRCA1 gene - isn't it pretty? 🙂

In 1990, a woman by the name of Mary-Claire King noticed that families with a rich history of breast and ovarian cancer shared a similar piece of genetic material. Of the 23 chromosomes in DNA, Dr. King found that this common genetic factor resided within chromosome 17. With this discovery, the race was on to isolate the single gene, among 1,000 genes in this chromosome, that was linked to breast and ovarian health. In 1994, a Salt Lake City lab narrowly beat out all of the other competitors and Myriad Genetics claimed ownership over the BRCA1 gene as their prize. A year later, they also discovered the link to BRCA2 and patented this gene.

As a result of the patent, only Myriad could test men and women for a mutation of the BRCA1 and BRCA2 genes, and they charged a pretty penny. To be exact, before March 29th, Myriad priced a comprehensive genetic test of both genes at approximately $3,000. But now that the patent is invalid (that is, pending appeals at higher courts) the test will become much more affordable and available! Access to life-saving science will no longer be a privilege but a right.

That huge landmark aside, today I scheduled another consultation with a breast surgeon. Dr. Shawna Willey is the director of the Betty Lou Ourisman Breast Health Center at Georgetown University Hospital. I actually used to volunteer there, so I’ve crossed paths with Dr. Willey on a number of occasions, and I’ve always admired her intelligence and her warmth with patients. She’s so personable, and it means a lot to me to have a personal connection with the lady removing my lady parts. I’ll meet with her on June 7th at 1:00pm, followed by a consultation at 2:30pm with plastic surgeon Dr. Scott Spear, also at Georgetown. These two doctors are covered by my insurance, which is awfully persuading. Funny to think there’s a possibility I might have new breasts crafted at the same hospital where I was born and on the same campus where I was educated.

The weekend before, I’m going to New York City to meet with breast surgeon Dr. Lauren Cassell and plastic surgeon Dr. George Beraka. These two surgeons were the same pair who performed a prophylactic mastectomy with reconstruction for Jessica Queller, a screenwriter and national advocate for young women at high risk for breast/ovarian cancer, and a true inspiration to myself and so many others. Dr. Cassell and Dr. Beraka also performed the surgery and reconstruction for my friend, whose gorgeous new breasts I was able to see and feel two weeks ago. I’ll meet with Dr. Cassell on June 1st at 10:00am, followed by my appointment with Dr. Beraka at 12pm. The one setback is that they are not associated with any health insurance company, so I’ll have to see what kind of figures they give me in June.

In the meantime, I asked my friend, who is in medical school at Georgetown, if she would like to accompany me into surgery should I have it done at Georgetown. Since she’s a med student, and it’s a learning hospital, she should be able to be in the operating room and see the whole thing! Dr. Willey’s office said she’ll need to get some signatures, but it shouldn’t be a problem. My friend, gratefully, was not completely grossed out by my cordial invitation. On the contrary, she’s excited to not only be there with me but to also learn from the experience, which is what I’m really thrilled about! When I say I want to share this experience so others may learn alongside me, I really mean it, even down to the operating room. Should I have my surgery at Georgetown, it will be so comforting to know that my friend will be present in the same space, watching the whole transformation. Although I don’t think I’ll want to hear the entire play-by-play afterwards.

As I firm up consultation appointments, the reality of my decision is settling in more and more. Instead of feeling anxious, I have mostly felt great relief. That is, I’m more anxious for the day when I can wake up and know that breast cancer will never be apart of my life, despite the odds I was born with. The same odds to which my grandmother lost.

Truth of the matter, after testing positive for the mutation, I feel like I’ve broken up with my breasts. Before they were my most precious commodity, my dearest friends.  Now they’ve taken a direct hit not only upon my livelihood but also my womanhood. There are even days when I feel like I have two ticking time bombs strapped to my chest. This may or may not be a healthy or rational depiction, but it’s how I feel. So, for now, I look forward to the day when I make amends with my breasts. It’s like a big argument with a best friend that only makes your friendship stronger in the end.

And when it all boils down to it, I can’t wait for the day when my breasts reiterate my passion for life and make this visible to my friends, my family and the world. What a blessing.