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Jessica Pearce Rotondi

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Breast Cancer Awareness: Will I Have the Disease My Mother Did?

Posted: 10/05/2012 7:46 am

My hips are spreading, pressing up against the waistband of a pair of 90s pleated pants that she wore so much, the lining is beginning to fray. I've begun to fill out her cocktail dresses, last dry cleaned in 1997. The leather of my watchband is threatening to crumble at the ridge where it's been clasped to fit the exact circumference of a wrist, though it's hard to say where the wear from my mother's wrist ends and the wear from my own begins.

My body is becoming my mother's.

I can look in the mirror and point out her eyes, her jaw; I can itemize the objects I have of hers and touch them until they disintegrate, but there is one part of her legacy that I can't touch or inventory: her cancer.

In July of 2006, my mother sobbed through her annual breast exam because a close friend had just been diagnosed with breast cancer. Mom's test was clear that day, but three months later, she stepped out of the shower and saw a 4 centimeter lump rising out of her own breast in the mirror. Tests revealed that she had Stage IV inflammatory breast cancer -- a rare disease with a five-year survival rate of 11 percent.

Inflammatory breast cancer isn't hereditary. There is no gene they've identified that mothers pass on to daughters; no patterns that pick out certain women as targets. There is no known cause, and IBC often goes undetected in physical exams, preferring a dramatic entrance and quick bloom throughout the body.

An 11 percent survival rate. We cried. Mom began to keep an online journal about her treatments, sharing jokes and stories with the friends and family members who drove her to and from chemo, dropped off dinners on our doorstep and called to check in. She wrote thank-you notes for every single act of kindness.

When cancer spread to my mother's lymph nodes, the doctors removed them and I watched her sleep while hooked up to tubes. When it spread to her bones, the doctors inserted titanium rods in her hips and femur and I watched my mother learn to walk again. When it spread to her lungs, brain and liver, there was nothing else we could do. She died on Oct. 29, 2009, at the age of 56.

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Three years after her death, I'm in what Susan Sontag called "the kingdom of the well," but I see entrances to the kingdom of the sick everywhere.

The all-too-familiar lighting in hospitals makes my heart race. I have panic attacks when I get my blood drawn and hold the hands of nurses kind enough to oblige the 26-year-old giving a routine sample with a squeeze. I recall my mother's bruised hands stuck with chemotherapy needles and am ashamed.

I flinch when a partner touches my breasts. I tell myself calm down, you're safe. I wonder if the chill will ever leave me.

I go to the weddings of friends and see in my mind's eye the last one we attended as a family: My father standing behind my mother in her wheelchair a month before she died, both of them watching the couple's first dance. I remember thinking how frail Mom looked, how young and sad and aged my father appeared behind her.

Breast cancer enters our bedrooms. It comes with us to fitting rooms. It's with us at weddings when our mothers or sisters are not.

The inheritance of cancer, whether it's in our genes or in our memories, is everywhere. One in eight women will be diagnosed with breast cancer in their lifetime. This October, when the world takes a month and dedicates it to a disease that is set to take away 39,510 people this year, HuffPost Women and HuffPost Healthy Living will be showcasing the stories of survivors, their loved ones and those currently battling the disease. If you'd like to share how breast cancer has impacted your life or the life of someone you love, please send your story, a photo you would like us to feature with it, and a headshot and bio of yourself to MyStory@huffingtonpost.com. If you have any questions, feel free to email us at that address.

This month, let's share our stories and support research that can give us all answers.

PHOTOS: 'My Breast Cancer Story'

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  • 'I Promised Myself When I Made It Through, I'd Take My Girls to Disney World'

    When I was 19, I was diagnosed with Hodgkin’s lymphoma. It was 1992. Imagine being only 19 and taking time off from college to go sit in a chemo room with cancer patients only to realize that you, too are a cancer patient. Part of my treatment for Hodgkin’s, beyond the absolutely terrible chemotherapy regime, was one month of radiation to my chest. Fast forward to 2004, when that same radiation “caused” my breast cancer. I was 32 with two children, a checked out husband and breast cancer. I chose a double mastectomy and had chemotherapy. I could not have any more radiation at that time because I had so much 12 years ago. The chemotherapy made my bones ache from the inside out. I slept during the day so I could be awake for my kids in the evening. I had to continue working full-time to support our family. I continued to be involved in my children’s school and activities, but I also had to fight this disease, which is a full-time job on its own. My daughters, 2 and 4 at the time, shaved my head for me. I promised myself that when I made it through that I would take my girls to Disney World one day. After chemotherapy and reconstruction I started on Tamoxifen, which gave me terrible hot flashes and night sweats. My husband left me. I was devastated. But I went on. I took the Tamoxifen for five years and then went off it and life continued. I took my girls to Disneyworld. And then… In 2011, I was again diagnosed with breast cancer. It was in the same breast. Although I had chemotherapy and a double mastectomy and had less than a 1% chance of recurrence, it came back. I was either damned or really special. I wasn’t sure if I should buy a lottery ticket or lock myself in the house. The weekend after I was diagnosed, I invited all of my favorite women over to my house for wine and snacks. I needed the strength of women around me. That may have been the last day during the past year that I knew what I needed. I had another mastectomy on the right side. This time it also involved my lymph nodes, so we had 12 of them removed as well. I underwent six months of chemo and a month of radiation and am now on Arimidex. Arimidex leaves me feeling irritable, achy and not like myself. But my body needs it, so I take it. I am awaiting my final reconstruction surgery after the New Year and am also electing to have my ovaries removed to get that estrogen out of there. My girls are turning 11 and 13 this fall. They have dealt with this nasty disease virtually all of their short lives. A few months ago, my friends had a benefit for my family to assist with our bills. I am not one to accept help, so this was difficult to accept. I chose instead to see this as a celebration of my fight and an outpouring of love and support. Looking out that day at all the people who came out for my family, I was overwhelmed in an amazing way. People I didn’t know came out to support my children and me. It reminded me that there are so many good people in this world and that my battle was not mine alone to bear. Telling a cancer experience or battle does not only take two or three paragraphs. It takes a page for each day. It is something you think about and deal with each and every day in one aspect or another. But today I am here and healthy and believe there is no cancer in my body. -Monica Theis

  • 'Breast Cancer Is Always Looming'

    Today's story said exactly how I feel, that breast cancer is always looming. I was diagnosed in March of 2005 at the age of 42. My doctors can't explain it. I was healthy, ate right and was an exercise nut, but I had stage II breast cancer nonetheless. A week after my diagnosis I had a mastectomy followed by eight chemo treatments. I've been cancer-free for eight years. So what am I doing this month of heightened awareness of breast cancer? Having a mastectomy on my remaining breast. Why? Trying for some piece of mind. My aunt, my Mother's sister, was recently diagnosed. My Mom was diagnosed before me. We have no genetic markers, but family history has begun. I've chosen to make this somewhat radical decision so I won't have to face this dreaded disease again. The photo is of my wonderful partner of 16 years at our wedding in New York in August of 2011. Thanks for your story and honesty. -Michelle Vance Waddell

  • 'My Mother's Heart Is What I Admired Most'

    My mother always hated hospitals. So hearing that she had two to three months to live and that we should make arrangements for hospice care was first, a completely surreal experience and second, a call to action. In her final days, Mom came to live with me. It was not easy to convince my mother to leave her home and live out her final days in her oldest son’s home. She’d been living happily on her own for fifteen years since my parents' divorce. My mother had beaten breast cancer before. She was declared cancer-free in 1997 after being diagnosed with stage II breast cancer in 1995. Tamoxifen was the chemotherapy drug that was effective in eradicating the cancerous cells in her breast. We believe Tamoxifen may have led to the <a href="http://www.sciencedaily.com/releases/1999/10/991008075836.htm">uterine cancer</a> that killed her on March 25, 2011. Mom loved skipping out on her chemo sessions to steal time at her favorite movie theatre. “You guys are trying to kill me!” was her response to the nurses' inquiries as to why she missed her chemo appointment. She was smiling as she whispered to me, “Don’t worry, I’m going to beat this thing,” a day before she died. My mother’s heart was what I admired most -- the size and the depth of it, even at the end of her life. I used to believe that I inherited it, but now I’m not so sure. Watching my mother disintegrate a day at a time before my eyes was the hardest thing I’ve ever had to do. But in a strange way, it was also a gift. Her gift to me, God’s gift to me. I see life differently now. I see how fragile it is and how much time we all waste on insignificant things. What it means to really love someone. I think of my own wife and daughter and pray that breast cancer is something they never have to deal with. I hope to live my mother’s legacy in a way that she would be proud of -- a life lived full of heart and happiness. My heart was mortally wounded when she passed, but it’s not dead. I know you’re up there, Mom, laughing and smiling. -Eric Campbell

  • 'I'm Here to Live a Life my Mother Didn't Get a Chance to Live'

    My mother died of a brain hemorrhage at the age ad 54... that was alway my fear, never breast cancer. After all, we had no breast cancer in our family. I was 50 and had mammograms every year since age 35, had done self exams every month, ate well, excercised, didn't smoke, breastfed my children, hardly drank... I was surely at low risk of developing breast cancer. So when they said after my mammogram, "we'd like to do a biopsy," I thought, <em>No big deal, it's the first time they've ever done one.</em> So when I saw my doctor's name on my cell phone's caller ID a week later on Friday, April 28 at 11:00 a.m., 2006 ( yes, I remember the exact time) I KNEW it was good news... so I answered cheerily: "Hi, I guess you're calling to give me good news?" "The doctor would like to speak to you," his nurse answered. <em>All I heard was carcinoma, carcinoma, carcinoma...</em> I was at work and a colleague had just opened my door to see the horror on my face. The room was spinning, I was shaking, trying to write down what my doctor was saying... my vision was fuzzy, trembling, spinning.... my colleague froze and mouthed, "are you OK?" I couldn't speak, I just motioned for him to shut the door... My doctor asked me if I was OK... I had to call my husband. I hung up and don't know how I dialed my husband's number because I was shaking so badly and I couldn't speak. I just sobbed, mumbling... hyperventilating... he kept asking if the kids were alright, he thought someone had died, but all I could muster out was that it was cancer... <em>I had breast cancer. </em> That was 2006, a day I will never forget. I was just entering my last year of grad school and thought <em>Why? Why now? </em>Everything was a blur. My husband came with me with notepaper in hand to a flurry of appointments and tests, blood work and then more doctors and more tests. It felt the same way when my mother died; I was in a blur of emotions and denial. I eventually mustered up the courage to ask my oncologist if they had the wrong pathology report, as I was convinced it wasn't mine. But here I stand almost seven years later after two lumpectomies, six months of chemotherapy, seven weeks of radiation, almost a year with no hair, two years of Tamoxifen, three years on Aromasin and I'm HERE, I'm well, I'm cancer-free and I am a different, stronger, more assertive, more compassionate woman. And I will be here for a long time, to complete my second chapter, to be here for my kids when my mom couldn't be for hers, to be a grandmother... to live a life my mother didn't get a chance to live. I am here. -Leila Khalidi-Langford

  • 'Before I Always Longed to Leave; Now All I Wanted Was to Stay'

    I left home for the first to live abroad when I was 16 to spend a year in France with a host family. As selfish as teenagers can be, I was happy to get away from my family and be far from my mother, who at the time was suffering from depression coupled with alcohol problems. At 21, I had -- thankfully -- more sense and was mature enough to go straight to the train station from class and hurry home to her side as soon as the news of her umpteenth hospitalization reached me. I was keeping her company every day even when, according to my memory, my younger brother, her favorite, wouldn't visit. Yet there was resentment, spite, anger and disappointment behind my caring, patient facade -- feelings that dominated my relationship with her well beyond her recovery from both depression and alcohol problems. And I kept leaving home -- for Paris, Vienna and ultimately the U.S. -- and she kept blaming herself for making me flee. It wasn't until I had been living here in the U.S. for about a year that the magnitude of her achievement truly sunk in. Not only did she recover from two diseases that are known to destroy lives; she also co-founded a non-profit organization, Kiut Alapitvany (The Way Out Foundation), which treats people with addictions. She completed a degree in addictology and is now an expert in her own right. As I was realizing how much it must have taken her to reconstruct a normal, quasi-healthy life both professionally and on a personal level, the admiration I reserved for my father only since I was a little girl slowly shifted. Of course I wouldn't be writing this story if it had a happy ending. At my annual Christmas visit home last year, my mother off-handedly mentioned that she was asked to attend a second exam after her annual mammogram. She dismissed it as routine. Next time it was another exam, and then another. Everything was conveyed to me on the phone across the Atlantic; rudiments of information that left me with more questions. Then came a surgery, and the surgeon telling us that there was 90% chance the tumor was benign. Ten days later -- I am sure I don't need to tell anyone with a cancer patient in the family that time has never went by slower -- the diagnosis was that the tumor was not only malignant, but had also spread to her lymph nodes. A couple of days after her second surgery, I flew home on a day's notice because I could not bear being so far away, not knowing what was going on, not being able to help as her only daughter. But we don't live in an ideal world and mundane things such as my job, my visa situation and my relationship made me return to the U.S.. It was probably the hardest decision I have had to make so far. Before I always longed to leave; now all I wanted was to stay and help her through chemotherapy and radiation and everything else. Both my father and her categorically forbid me to do this, being the selfless parents they have always been, telling me that I have my own life to take care of and my own priorities to follow. I called my mother every single day to check on her and spent more than one evening in tears, telling my boyfriend that I should be home and that I am a bad daughter. I still think I will not forgive myself for not being there for her when she would have needed me the most. My mom came to my graduation ceremony between two chemotherapy treatments, her first time visiting the U.S.. She dazzled everyone with her great looks and good mood, and made the most of her West Coast trip with my father. After 35 years of marriage, they seem to be living some sort of a second honeymoon lately -- the silver lining, if there is one. I'm still in the U.S., although I change my mind on a daily basis whether I should keep looking for a position here or if I should go back to Europe to be close to her and the rest of my family. I recently told my mom about all the events and actions that are going on here this month to raise awareness; she said it was wonderful to hear all this and that her favorite part was the NFL players' pink gear. Now in radiation before her hormone treatment begins, she goes on with her life like a champion, babysitting my older brother's two young daughters, cooking big Sunday lunches, shepherding my troublesome younger brother and providing me with her wise counsel whenever I call with issues that always end up looking ridiculously light when I realize who I am talking to. After all, this is the woman who successfully fought depression and her alcohol problems and made a stellar comeback. When breast cancer came knocking, she faced it, she is fighting it, and she has not intention to give up. After all, that's not her style. -Zsuzsanna Lippai

  • 'Congratulations, Mom!'

    I still remember the day I found out. It was the fall of 2005. I was 17 years old and I was a senior in high school. A few days before the dreaded words came, my mom was in a funk. Usually forthcoming with updates about her day, on that day my, mom was unusually quiet. I had to pry to find out what was bothering her. She simply replied, "I had a doctor's appointment. I'll be okay." Her trembling voice suggested otherwise. When I questioned her further, my mom told me that on that coming Wednesday, she would get her biopsy results. Fearing that my preconceived understanding of what a biopsy meant was scary and correct, I spent hours researching the term online. Years later, I am able to call that denial. When Wednesday rolled around, I was terrified. I tried to forget about what the day would bring but it was hard. I couldn't find ways to distract myself. When evening came and there was no update, I thought everything was going to be okay. This feeling was short-lived. As soon as I returned home from a college meeting with my father, my mom broke the news: My mother had been diagnosed with breast cancer. She wouldn't tell me how developed her cancer was. While I was initially hurt by her secrecy, I later understood that this was her way of protecting me. She, too, was scared. The next year was a blur. I remember her telling my 10-year-old brother and her elderly parents about her diagnosis. My mother's hair loss. My mom's wig. Forcing her out of bed after chemo to attend her best friend's wedding. Visiting her during chemotherapy. Refusing to attend Senior Prom. Fear of leaving for Israel for three months on a school trip. Moving into college without my mom. Luckily, against all odds, my mom overcame cancer. She won the battle. My mother has been and will always be one of my biggest sources of inspiration and support. She has shown me how to draw strength from every experience. She taught me how to laugh and enjoy life. She taught me how to persevere and stand up for what I believe in. Most importantly, she taught me how to love. She showed me how to embrace love and express love, even when miles away. You and I, Mom, have come a long way. Thank you, Mom, for positively influencing me and shaping me into the confident and loving young woman that I am today. Congratulations on being six years cancer-free. -Maytal Schmidt

  • 'Anger - the Emotion You're Not Allowed to Discuss'

    Anger -- not the emotion you read about in articles or blogs and the emotion you're not allowed to discuss. You're supposed to be grateful for 'early detection,' which really means anything below Stage III. Anger was my second emotion after hearing the diagnosis from my doctor and one that I still feel. I've gotten over my initial emotion (in case you're wondering, intense fear of death), but not the anger. I was 38 when I was diagnosed and I have young children I nursed exclusively until they were 1 and who were born before I was 35 (if you pay attention to the risk factors of breast cancer as much as I always did, you'll know what i'm talking about). I have no family history of breast cancer, etc, etc. It just isn't fair. It's uncalled for, baffling. My next reactions, particularly while attending the myriad of appointments and tests, was whatever precedes tears and often, impatience and annoyance. -Mara Goltsman

  • 'I Tattooed Flowers Over My Scars to Reclaim My Body'

    My story started in August of 2010. I had just lost my adoptive mom to leukemia in March and was settling into my new life (I had left my husband of 20 years in late 2009). I found a lump and proceeded to make an appointment. I debated about that doctor appointment many times. I was in the best shape of my life -– I had quit smoking, was eating relatively healthy and was running two miles every day. Finances were tight –- I was a single mom raising two teenage boys on my own. Did I really want to spend the $80 on a doctor visit? (I was uninsured at the time). I knew… just KNEW that the lump I found was a cyst. However, I went to the doctor. I was 42 at the time. My birth mom had breast cancer (DCIS) a few years before. Due to that factor, I was sent for a mammogram. That lump I found? It <em>was</em> a cyst. But hiding it behind it was a mass. Several ultrasounds and biopsies later (after PET scans and MRIs), two separate tumors were found in my left breast. I was devastated. Two separate tumors meant a mastectomy. I decided to go ahead and remove the other breast as well. I didn’t want to deal with it coming back in the other side. I was officially diagnosed in September of 2010. I had my bilateral mastectomy in November, 2010. Thankfully, no lymph nodes were involved. That was my first question upon waking from surgery. I battled multiple infections and skin issues and had two reconstructive surgeries in 2011. I was a bit active in a local charity and appeared in their “survivor” calendar. In 2012, I was DONE. I tattooed flowers over my scars to reclaim my body. I’ve come a long way this year. My boys were my staunchest supporters. A new life entered my life last week in the form of my grandson. He is my “reward” baby for going through all that I endured. Cancer is a battle, physically and emotionally. I had zero self-image when I was diagnosed. I was slowly regaining a sense of who I was, a sense of self worth, when I received my diagnosis. To realize that my body would be forever changed… part of my femininity gone forever… cut me to my core. Sitting one day in my closet, going through clothes, looking at bras that I would never again wear brought me to tears. I used to cry on my commute to and from work -– it was the only time I could release all the anger and sadness. I continued working as a legal assistant during my cancer battle. The end of the story is I made it. I am <em>here </em>to watch my boys grow up, to see my grandson grow. Cancer touches all of us in one way or the other. It made my children appreciate life and realize no one should be taken for granted. -Diane Aldada

  • 'Susie Lived That Year With The Strength of an Entire Army'

    14 years ago, my dearest friend was diagnosed with Stage IV inflammatory breast cancer. At that time, we had been friends for 42 years. She was 44 and I was 45. We were babies who played in the sand together every summer on the Connecticut shore... preteens who wrote in our diaries together... teenagers who stole each other's boyfriends... young adults who grew into womanhood together. I went on to marry and have three children, while she dated and stayed single... Or as I always said, "she became my husband's other wife." She mothered my children as if they were her own. She was especially close with my youngest daughter, Amanda, who is now 27 and due to give birth to her first child in December -- a boy, who will be named Sloan after Susie. Susie and I kept laughter in our lives always. She was always the one percent!!! Her breast cancer was estrogen negative. She went through rounds of chemo... three different types... radiation... but no surgery to remove her breasts because she LOVED her breasts!!! And at that time they had found it had spread to her femur and shortly thereafter to her brain. To surgeons it wasn't worth it. Susie lived that year with the strength of an entire army. Fighting the big fight -- the war against breast cancer. She stayed strong until the final week! -Merle Gandolfo

  • 'It's What I Think About All the Time'

    It's what I think about all the time. Not if I get breast cancer, but <em>when will it be my turn?</em> My maternal grandmother, mother and cousin all have had breast cancer. I understood very early that I had to be proactive with my mammograms and check-ups. It wasn't until I read your blog and you mentioned flinching when your breasts are touched that I realized that at anytime, you might find that lump. I read all the articles and research all the statistics because in my mind, I will become one. It's just a matter of time. I am pre-planning my course of action and hope that I am lucky enough to find it early. Although I am much older than you and closer to your mother's age, I understand your feelings. -Marilyn Rego

  • 'It Stole the Life of a Woman I Never Had the Opportunity to Know'

    Reading your article on The Huffington Post about breast cancer and whether or not it's hereditary shadowed my own experience with the loss of my mother when she was only 36 and I was about 2 years old. I have been so terribly concerned about inheriting this horrid disease that I failed to marvel at the wonders she did pass on... such as how I possess a wondrous ring of gold around the pupil of my green eyes, which undoubtably came from her, since my father's eyes were bright blue. Your article made me think about the beauty my mother possessed and passed on, not only the probability of the inheritance of breast cancer, which stole the life of a woman I never had the opportunity to get to know and love. I am sorry for your experience with breast cancer; the scars it leaves behind are deep and everlasting and they never go away. Whether you are the victim, family member, friend or supporter of someone with breast cancer, once cancer touches your life, the memories are there forever and last a lifetime. -Tracey Leclerc

  • 'In Those Days, Having Cancer Was a Secret'

    OK, so I might not be famous, but I am special. After all, I have been stuffing my bra for over forty years, and have married not one, but two gorgeous men after my radical mastectomy. I've turned a crisis into a career. From 1964 to 1979 I had exciting adventures living overseas, first as a Peace Corps Volunteer in Ethiopia and then as a young wife and mother in East Africa and Paris. But my most challenging adventure was coping with breast cancer at age 25. While living in Uganda with my husband and 2-month-old baby daughter, Kendel, I found a lump. It was malignant. In those days, having cancer was a secret. Dirty. Shameful. Some even thought it was contagious! But my flight and circumstances were so dramatic that there was no hiding the loss of my breast. I stuffed my bra with my daughter’s diapers until I could get a form. I use the word "form" to describe what one wears after a mastectomy. The proper word, prosthesis, sounds technical and cold to me. Besides, my tongue always gets twisted when I try to pronounce it. I have spent more than half of my life with one breast. Reconstruction was not an option when I was diagnosed in 1968. I have ridden the roller coaster of divorce, heartbreak and new-found love, marrying the love of my life at age 57, all with one breast. But most important of all, I've relished every minute of my life! I have worked as a mastectomy fitter, as a sales representative and as a model for manufacturers of breast forms. I was a Reach to Recovery volunteer for the American and French Cancer Societies. I have taught breast self-examination at corporations and high schools, have trained mastectomy fitters, have given lectures to doctors and nurses about the handling of breast cancer patients and have appeared on numerous radio and television shows. I had a son 4 years after my surgery! The photo is of me and my daughter. -Mary Leake

  • Submit Your Story

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