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Jessica Pearce Rotondi

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More Than a Pink Ribbon

Posted: 09/30/11 09:00 AM ET

While I was growing up, October meant my birthday and my mom's homemade Halloween costumes. When I was 21, it became the month Mom found a lump in her breast. The year I turned 23, it was the month I lost my mother to inflammatory breast cancer.

When I was first diagnosed with cancer back in 2006, I have to admit that it was initially a very lonely experience. I knew that my family loved me and would help me through it, but I knew I would have to handle what it would do to me on my own and I wasn't sure what that would entail. They say that you are born alone (although, as a mother, I would argue that point) and that you leave this world alone. I just want to say that after that initial moment of hearing my diagnosis, I have never felt alone again.

My mom wrote those words on April 22, 2009. Six months later, on October 29, 2009, she became one of the approximately 39, 500 women in the United States to die from breast cancer each year.

Every October, much of America is draped in pink for National Breast Cancer Awareness Month. But it's not enough to purchase pink kitchen appliances, flip flops, or keychains; we need to look beyond the ribbon and have honest, open talks with the people we love living with this disease.

My mom's lasting gift to her daughters, family and friends was making cancer something you could talk about. She wrote about her journey through breast cancer on a journal she created on CaringBridge.org, a site created for people battling serious illnesses to share the stories.

When someone we love is sick, the things we'd ask before -- "how are you?" -- or confide to them -- "I had a bad day at work today" -- seem inadequate or inappropriate. For my mother, enabling people to say these small things was to continue to be the woman she was before her diagnosis. When up against an illness that threatens so many outward signs of womanhood -- the ability to bear children, if the chemo causes you to go through menopause prematurely, as it did my mother; your curves, and often your breasts; even your eyelashes and eyebrows -- my mother maintained her core identity as a wife, a mom, a funny, loving friend, and a confidante.

Mom was a "talker" before she was diagnosed with inflammatory breast cancer, and her gift of telling stories and connecting with people helped her stare down a disease that takes away far too many women each year. And she refused to go down quietly.

Writing in her journal, my mother explained her reasons for recording her experiences:

My humorous take on all things cancer is my way of dealing with this illness. I would like to make people comfortable enough to ask questions and to demystify ... this disease. It needs to have a spotlight pointed at it so it can be seen for what it is and then creep back into dark corners like the cockroach it is (sorry, guess I should have had that second cup of coffee, after all). Know that I love you all and my wish for you is that you always stay strong and never lose faith. Love, Linda

Humor became a weapon in her battle to remain herself while lightening the load on hardworking physical therapists, helpful family members, doctors, and her fellow patients lined up in waiting rooms for treatment. Here's what she had to say after major sugery:

Well, I haven't decided what pajamas I will be wearing for the red carpet on Sunday when I watch the annual Academy Awards.

And here are a few more of her reflections:

In January, I scheduled an appointment with a local orthopedic specialist named Dr. Wack (would I make this stuff up?) and I told him I have a history with doctors with unusual names going back thirty-some years, when I had all my wisdom teeth removed by Dr. Payne.
When I went to see my oncologist yesterday afternoon and went in for my vitals to be taken, I experienced something that I have never felt in all my years on this planet. I was overjoyed that I had gained a few pounds since last week! It was a Bridget Jones' Diary entry in reverse!
Today I will be having a visit from a physical therapist who will be putting me through my paces. I hope she has forgiven me my question during her last visit. I'm afraid I asked her if she had ever been a Marine.


Mom wrote and talked about cancer like it was just this thing she was handling, refusing to let it stop her from doing the things that meant the most to her. Mom had a mastectomy two months before I graduated from college but was in the stands supporting me as I received my diploma. Her femur was replaced with a titanium rod when her breast cancer spread to her bones and compromised her ability to walk, yet she still traveled, five months later, to visit my sister Morgan in Germany, hiking up hilly terrain with a cane until the effects of the chemo caught up with her and she was forced to use a wheelchair, which my sister pushed to the sites they wanted to see together. Through all of this, Mom kept writing, because she was determined that nothing, absolutely nothing, could keep her from being around for as long as possible for her daughters:

The first weekend I told the girls about my cancer in 2006, we went up to my bedroom and tried on scarves and hats for my upcoming new look when I would lose my hair during chemo. We also tried this new look on Winston, our Jack Russell, and Chuck took pictures of us. We named the pictures 'All for One, One for All.' ... My girls lessened my sense of unease and I hope they will always remember that scary stuff isn't quite so scary when you can laugh about it.

In her last months of life, Mom told me she was writing something about cancer that she thought could help other people who were sick feel less alone. After we got home from the hospice the day we lost her, I searched frantically through her computer, through the drawers of meticulously labeled correspondence, searching for a last message from Mom. The only thing I found? A one-page outline for an intended screenplay she never began. I was heartbroken.

It was then I realized I already had so much of my mother already recorded in her funny, inescapably Mom voice: her journal, the place where she spoke about what the chemo felt like in her veins, the place she wrote tributes to and thanked the people that drove her to countless treatments, and the place she made all of us laugh, even though we were aching at the thought of losing her.

Writing in her journal on April 22, 2009, Mom quoted a line from one of her favorite movies, "Waking Ned Devine," showing how her journal had become not just a way to keep a big family up-to-date, but a lifeline:

'What a wonderful thing it would be to visit your own funeral, to sit up at the front, and hear what was said. Maybe say a few things yourself.' I realize after reading messages on this website, and notes and cards -- that I do not have to wonder about the wonderful people around me and what they would say. I feel as though I have been given a great gift.

Mom didn't get to speak at her own funeral, but she sure as hell got to say some things about cancer. Whenever I reach for the phone and realize I can't call her, I reread her entries and am reminded of her courage, her humor, and her love for life.

Mom wrote about choosing lupine flowers for her blog's background over the pink breast cancer ribbon theme expected of her. I always believed it was a nod to a book she read to my sister and me when we were little, "Miss Rumphius," the story of a little girl who goes out to make the world more beautiful and achieves this as an old woman by spreading her beloved flowers around the globe. In her post, Mom made a joke about having trouble growing lupines, and hoping that "wasn't a bad omen."

The last photo taken of me with my mother is of us standing in front of our childhood home with my little sister. Mom has a pink hat covering her head, once again hairless as an infant's from chemo. But behind us, Mom's lupines rise up as tall as our waists, and they grow back bigger and more beautiful every year.

If you or a loved one is going through breast cancer and you'd like to share what makes them "more than a pink ribbon," respond to us here or on Twitter @HuffPostWomen with the hashtag #morethanpink


 

Follow Jessica Pearce Rotondi on Twitter: www.twitter.com/lanewyorkaise

While I was growing up, October meant my birthday and my mom's homemade Halloween costumes. When I was 21, it became the month Mom found a lump in her breast. The year I turned 23, it was the month I ...
While I was growing up, October meant my birthday and my mom's homemade Halloween costumes. When I was 21, it became the month Mom found a lump in her breast. The year I turned 23, it was the month I ...
 
 
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10:56 PM on 10/09/2011
Your story reminds me so much of my own. My mom was diagnosed in October of 2004. Her first chemotherapy session was right after thanksgiving. She had a mastectomy 2 weeks before my high school graduation and sat in the uncomfortable bleachers for the entire 2 and a half hour log ceremony. She had gone into remission for 3 months before it was back with a vengance. We went through that cycle too many times. The last time it had come back she was told it had metastisized to her bones liver and lungs. What they didn't tell us was it had gone to her brain as well. In October of 2008 she had a scare where doctors discovered her brain was swelling and the cancer was taking over. Two weeks later on October 29,2008 cancer took my mom from my two brothers and I. My little brother was only 14 I had just turned 21 and my oldest brother was 23.
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tweeksmom
Pppfffftttttttt.....
08:26 AM on 10/03/2011
I lost my mother to breast cancer in 2003 so of course I will spend the rest of my life being relentlessly stalked by the evil beast. I will not contribute one cent to all the "pink ribbon" garbage. It is nothing but a Madison Avenue advertising ploy to sell crap and does absolutely NOTHING to defeat the scourge of breast cancer.
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AbeMartin
The best person fer a job is never a candidate
11:42 AM on 10/04/2011
Well, then tweeksmom, I guess that you should be grateful that you will still have access to the diagnostic procedures that can detect the disease earlier and earlier and the new non-radical treatments such as vacuum aspiration that make it possible to eliminate early cancerous growths without having to surgically removed the entire breast.  Much of this work has been accomplished by the outstanding work of the Susan G. Komen Foundation, and by many celebrities who have acknowledged that they have had the disease and encouraged regular self-examination, mammograms and other diagnostics. 

The many tens of thousands of survivors and their families and friends obviously do not agree with you  that this is a Madison Avenue advertising ploy and do not, fortunately share your bitterness, or withhold their contributions to research.
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tweeksmom
Pppfffftttttttt.....
01:46 PM on 10/04/2011
"Komen has also been caught up in the controversy over "pinkwashing"—the use of breast cancer and the pink ribbon by corporate marketers, especially to promote products that might be unhealthy—in return for a donation to the cause. Komen benefits greatly from these corporate partnerships, receiving over $55 million a year from them.[46] However, critics say many of these promotions are deceptive to consumers and benefit the companies more than the charity.[47]"

http://en.wikipedia.org/wiki/Susan_G._Komen_for_the_Cure
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KisaCat
02:35 AM on 10/25/2011
The truth is somewhere in the middle. While Komen has certainly helped the cause, and much gratitude for this, they've also commodified breast cancer too and pinkwashed the whole thing. I lost my mom to breast cancer a few years ago and I must admit the pink ribbon campaign and swag make me a little turned off.
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bonschwein
01:56 AM on 10/03/2011
Beautiful story. The most poignant stories in life are ones like this, where a loved family has terrible pain to endure in the heartbeak of losing a mothers' unfinished love.
MyrtleJune
STOP negotiating! End the American hostage crisis!
01:18 AM on 10/03/2011
People need to quit this "celebration of breast cancer" pink products stuff and start looking at the cancer causing agents IN those pink products and take a HARD LOOK at the numbers of people who have died and continue to die from breast cancer. My mother died from breast cancer over thirty years ago and I have to tell you, it seems to have escalated NOT gone down. I can't even shop at a certain market chain because of their celebrating breast cancer carnival atmosphere. It makes me sick to think of the women still suffering and dying while this celebration goes on. It makes me sick to think they are not doing ONE THING to stop the defunding of major screening providers while they are celebrating breast cancer. It doesn't seem to be changing ONE thing in reducing breast cancer.
09:23 AM on 10/02/2011
Jessica, I can't think of a better way to live and weather such a vicious disease. You and your mother seem to have had a full and whole relationship in the time you had, that few get to have over many, many years. What a beautifully written testament to your mother and so many other's mothers, who will relate to your words. I am left feeling jubilant and joyous for you. Your mom's journal is on a beautiful background and I plan to spend an afternoon reading it, simply from your lovely article. Thank you.
07:55 AM on 10/02/2011
Thank you for sharing this story of courage and hope. I wish you the best of luck for the next 30+ yrs.
10:02 PM on 10/01/2011
Jessica, Your story about your mom captures the essence of who she was. She was such a special person and your article is such an inspiration to all the people in this world that are fighting cancer. You did a fantastic job and I am so proud of my niece. You are a strong and talented woman like your Mom. She would be very proud.
Laurie
PatrioticUSGlory
Lawyer, Market Analyst, Economist
03:42 PM on 10/01/2011
Jenna's Journey to Healing blog is magnificent. She has also been fighting cancer, but the resources and other healthy tips and resources she discusses and links to are great. Just do a search and it will appear.
03:21 PM on 10/01/2011
Wow, my heart goes out to you. Bless you and your mom and your family. My thoughts and prayers are with all. Thanks for sharing.
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Lori Gaddis
Fur children are real children
09:13 AM on 10/01/2011
If we all become part of the fight for a cure, maybe there would be fewer of us fighting for our lives.
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Lori Gaddis
Fur children are real children
09:02 AM on 10/01/2011
I was diagnosed with metastastic cancer on May 10, 1994 at 39. My daughters were 8 and 12. Mastectomy, reconstruction, chemo, more surgeries, etc. And, a husband who blithely stated on the way to our first chemo...."Now is not a good time to tell you, but right before the diagnosis, I was going to leave you.." I had to convince him to stay - I needed his insurance. Fast forward 12 months - I was enrolled in nursing school and finished my degree. I kicked him to the curb one year after I graduated. 17 years later I am still here, and am an oncology nurse. So much for the physicians who told me I had about 5 years to live. People call me a hero, an inspiration, a warrior, an angel. No. I just showed up every time they told me to come, and did what they told me I had to do. Who are they? They are the real heroes - the doctors, the nurses, the support staff, the kitchen worker in the hospital who made sure I had only dark meat chicken on my plate....heros are Jessica Pearce Rotondi and her mom...heros are my daughters, now 29 and 25, who are incredible women. To everyone diagnosed with cancer....there is LIFE after cancer. It may not be the life you envisioned, but there is life. Live, love, laugh, cry, and always keep putting one foot in front of the other.
11:49 AM on 10/01/2011
Your post was what I needed to hear right now--after reading this story I haven't been able to stop crying. I was diagnosed with inflammatory breast cancer in 2007. I've done it all hysterectomy, mastectomy, chemo, radiation, year of Herceptin and then, this year it has metastasized to the bone marrow of the femur, so radiation, chemo drugs, and yep the rod in my leg. I read this article and so much matched, right down to the darn homemade Halloween costumes. trying to look at the bright side, laugh in the face of it, find the humor in it all, the look of no hair wasn't devastating, it was more like holy crap! and even after the mastectomy, I prepared myself that when I first looked I would cry and instead I burst out laughing, it was sad, sure miss that one but at the same time, the look itself was far just made me laugh. I write in a journal some of my fears but also words I want to say, afraid that I, who is a non-stop talker will forget to say it all to my boys. So I read this, all the same experiences and this woman in dead --I felt doomed. I just read what you had to say, and perhaps I can now walk away from the dark place, I always fight do manage to fight it and I will again, but this time you have been a helpful partner in it. Thanks.
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Jessica Rotondi
01:28 PM on 10/01/2011
Thank you so much for sharing your story. I remember watching my mother go through each one of those stages, each bout of bad news, and how devastated we both felt. But women do get through this and, with your humor, your love for your sons, and your writing, my heart and hopes are with you. Keep fighting and stay strong!
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Lori Gaddis
Fur children are real children
09:29 AM on 10/03/2011
Hugs and a hand to my sister....
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Jessica Rotondi
01:33 PM on 10/01/2011
Lori, I firmly believe that we have to be the hero of our own lives. Your story of going from multiple surgeries to graduating from nursing school, getting out of a relationship that wasn't working for you, and staying strong for your daughters is evidence of your courage and inner strength. There are so many amazing people that help us all along the way -- kudos to your doctors, nurses, support staff, and that kitchen worker who knew the little things are just as important sometimes, too -- and I want to thank you for sharing your story, and their stories.

Thank you for affirming for all of us that there is life after cancer.
08:13 AM on 10/01/2011
I have been aware of cancer for sometime now but watching people around me @ my age ,and that was very nice of the woman to share with her mom and her. thank you
08:10 AM on 10/01/2011
MY mother was a surviver of breast cancers, she had a radical masdectomy....she about 40 years old then...she lived to be 85......My younger sister died from breast cancer at about age 42 in 1998......she didn't....my mothers son died from cancer at age 27 he had a wife and two small children that was in 1967 at that time my mother was fighting to survive....they shared the cancer together....she never cried over loosing her breast as a single mom..She was there for her son and daughter .....strong for them! She never thought about herself and worried about it...she was taking care of her son, then later her youngest daughter, my sister lift behind a husband an 11 year old daughter and a teenage son. She is missed.Sometimes I vision them happy in a happier place, being strong together...God bless all the moms and women and family's, men too! who travel this road.....
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mollymac
nice girls seldom get the corner office
12:57 PM on 10/18/2011
Your story duplicates mine in that my mom was diagnosed with br. cancer at age 43. She immediately had a radical mastectomy. No chemo, no radiation. Only penicillin to thwart infection. She lived to be 85 as well. Power to those strong women! And to the strong women who are still here!
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artist5153
07:59 AM on 10/01/2011
What a beautifully written article--and what an amazing woman and writer her mother was as well! This is the very first thing I read on my computer this morning, and now, uplifted by what I've read, I'm not going to read anything else today--no sad or shocking news, no celebrity misbehavior or political rantings. I'm going to take the message of this piece and let it set the tone for my day...
07:05 AM on 10/01/2011
As a "Man" that underwent breast, yes "breast" surgery to remove two lumps thought to be breast cancer I found then and simnce that the world consistantly overlooks the fact that this is not only a womans disease. This came at a time in my life when I had recently also had a 'lung transplant", I now await a second due to rejection. I'm not here to point out a very scary, and ongoing period (Now ten years) of fighting for my life, I'm here to say men fight breast cancer every day. How many have died, or continue the fight is a mysterious number since it's such a 'hush - hush" isuue. so world, here me now .. STOP calling it only a womans disease. I also wrote a book about my experience, as someone above suggested the daughter write one. I learned too fast that following years of fund raising and watching every extra penny gominto medicine, and all things medical, you will find getting a book printed costs 'thoudsands" as the greedy publishers want you money, not your sob stories. Its all an uphill battle, may God bless the women (and MEN) that are facing it...
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AbeMartin
The best person fer a job is never a candidate
11:47 AM on 10/04/2011
Thank you, nanjed.  Breast cancer is also man's disease although the incidence is not as high.  I hope you every success in your continuing battle for restored health.  And I hope that the HP health issues editor will feature a story on breast cancer in men to encourage men (and any women or other partners) in their lives to pay attention to lumps or pains in the area around their nipples.