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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


 

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