SDN Spotlight: The Battle We Didn’t Choose eBook

Interviews and Questions from Scarves Dot Net

Interview with Breast Cancer Survivors

As many of you may know, over the past year the SDN gals have been working with bloggers, photographers, leaders, survivors, and patients in the cancer community to share their inspiring and heartfelt stories in our SDN Spotlight series.

Today we are proud to share that our friend and SDN Spotlight blogger, Angelo Merendino, has recently released a photo documentary book that powerfully details his wife’s battle with breast cancer.

My Wife's Fight With Breast Cancer photography

Available as an iTunes eBook and a downloadable PDF on Angelo’s website, The Battle We Didn’t Choose: My Wife’s Fight with Breast Cancer is a beautiful and moving tribute to his wife, Jennifer. We hope you will all take the time to check it out!

50% of the proceeds from The Battle We Didn’t Choose will be donated to The Love You Share, a nonprofit Angelo started in memory of his wife. The Love You Share looks to ease the everyday burdens of cancer patients by providing them with gift cards to local grocery services and transportation to doctors appointments.

You can also learn more about Angelo and Jennifer’s story by reading our interview with Angelo and by visiting his blog.

Knots for Hope Charity Drive

Knots for Hope

Serving the cancer community is a cause very near and dear to our hearts, here at Scarves Dot Net. Less than one year ago, our team announced the launch of Knots for Hope, a resource designed to instill hope in those affected by cancer. We have been both blessed and honored to receive positive feedback from customers and families who have stumbled onto our site and felt inspired.

Still, we want to do more for those who are battling cancer — a community that inspires us all. That’s why we are more than thrilled to launch the Knots for Hope Charity Drive this week. Through this new initiative, we’ll team with customers to donate head scarves to patients in need at The Cheer Guild of Riley Hospital for Children. Our goal is to donate at least 150 scarves — but we’re confident you can help us do even better!

cheer guild

So, how can you help? Partner with us to donate the Mya Scarf. Just look for “Knots for Hope” during the checkout process and, with a gift of $3.25, you will help us purchase the Mya to donate. But don’t stop there — help spread the word about this charity drive.

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Of course, even if you can’t help financially, we’d still love for you to be involved with Knots for Hope by sharing this resource where you can, watching step-by-step scarf tying tutorials, meeting bloggers affected by cancer, and much more! Read our stories, join our conversation, and start knotting for hope.

Louanne Roark from Look Good Feel Better

Interviews and Questions from Scarves Dot Net

Interview with Breast Cancer Survivors

Whether it’s heartfelt anecdotes or inspiring triumphs, the Scarves Dot Net gals love to share stories — especially when they’re incredibly touching. That’s why we’re starting a new series called SDN Spotlight. From influential bloggers to community leaders, we’ve scoured the blogosphere for the most inspiring men and women. So far, we’ve had the opportunity to hear from eight incredible individuals about how cancer has affected their lives.

Today, we’re honored to bring you our interview with Louanne Roark. Louanne is the executive director of the Personal Care Products Council Foundation, a position she has held since 2005. The Personal Care Products Council Foundation originated the Look Good Feel Better program in 1988, when the first pilot programs were offered at Georgetown Lombardi Cancer Center in Washington, DC, and at Memorial Sloan Kettering Cancer Center in New York. Louanne lives in Alexandria, VA.

Look Good Feel Better logo

SDN: Please briefly describe the Personal Care Products Council Foundation and its journey to starting the “Look Good Feel Better” program.

Louanne: The Personal Care Products Council Foundation is the charitable arm of the Personal Care Products industry. The PCPF has a long history of supporting women and women’s health topics.The story of Look Good Feel Better is one of both opportunity and hope. In 1987, a doctor was caring for a woman with cancer who was struggling to come to grips with the changes in her appearance due to her treatment. The doctor contacted a friend who happened to be in the cosmetics industry to ask whether they would be willing to provide her with a bedside consultation on using makeup and other products to help make her feel like herself again. Immediately following that consultation the doctor noticed a remarkable change in his patient — from her outlook, her confidence, and her desire to beat her diagnosis.

From that one encounter, Look Good Feel Better was born. Soon, the Personal Care Products Council Foundation, the American Cancer Society, and the Professional Beauty Association began collaborating to develop the program that we have today and that reaches millions of women around the world with the same promise — to help them once again feel normal in a life that is by no means normal.

SDN: How and/or why did you get involved with the Personal Care Products Council Foundation?

Louanne: I was working for the Council’s meetings/events department at the time and got involved with Look Good Feel Better in 1990 after watching with interest as the program was developed. My grandmother died from colon cancer, so I had the personal experience of watching her struggle with her disease. I wanted to do something to help other women find ways to cope with and manage their disease and the challenges of treatment. Look Good Feel Better presented the perfect opportunity to do that.

Beauty Editors Day

Louanne (second from right) on Beauty Editors Day at Saks Fifth Avenue

SDN: The LGFB mission is to improve self-esteem for women undergoing cancer treatments and to improve self-image through beauty sessions. We understand that a typical session includes tips about makeup, hair, nail care, and styling. Can you discuss, for our readers, how this creates a sense of support, confidence, courage, and community?

Louanne: Our national research among women with cancer and those who are cancer-free demonstrates that for the vast majority of women, how they look has a direct impact on how they feel. When a woman begins cancer treatment she often faces a cascade of dramatic appearance-related side-effects — from changes in her skin and nails, to weight loss or gain, to the loss of hair, including her eyelashes and eyebrows. Those changes leave women feeling isolated from family, friends, and colleagues, and have a negative impact on personal relationships.

Bringing women together in a safe, trusting atmosphere is an important demonstration to these women that they are not alone, and that they can overcome the appearance-related side effects of treatment. Our workshops impart a lot of great information and advice on the practical application of makeup, wigs, and turbans, plus clothing styling tips to mitigate the changes in outward appearance due to treatment. What’s more, the women around the table have the opportunity to share their own experiences — to talk, to laugh, to vent, to connect, and ultimately to bond with one another.

SDN: What advice would you give to someone who is hesitant to attend an event?

Louanne: I would tell them that they are not alone. The vast majority of our workshop participants are hesitant to attend at first. But once they’ve experienced LGFB, almost 100% say they would recommend the program to a friend or family member undergoing cancer treatment. We try hard to create a trusting atmosphere for our participants. No one is ever asked or required to share anything about their experience unless they choose to. It is all about giving women the tips, tools, and control to find themselves in the mirror again.

Look Good Feel Better workshop

Look Good Feel Better workshop

SDN: Drawing on your experiences with LGFB, are there any assumptions or misconceptions about cancer that you would like to shed some light on?

Louanne: Cancer takes a lot of things, both physically and mentally. But it doesn’t change who a woman (or man) is at their core. It may shake their confidence and rattle their self-esteem, but the power of the human spirit is an amazing thing. For the most part, people with cancer want to be treated like they were before their diagnosis. But due to the changes in their appearance, others often can’t help but affix the “cancer patient” label to them. It becomes a battle between what these people feel inside and what they look like on the outside. So, my message would be that: Yes, cancer changes you in both obvious and subtle ways — but you can still be yourself and feel like yourself by creating normalcy in your life. Spend time with your loved ones, keep going to that yoga class, talk to your friends, and continue to do as many of the things you have always done and enjoyed as possible. Be kind to yourself, and address and control the things you can so that you can focus your energy and endurance to overcome your cancer.

SDN: LGFB has some amazing corporate partnerships. Can you share a few opportunities that allow consumers to get involved and help raise funds for LGFB?

Louanne: We have a number of terrific corporate supporters that raise funds and make it possible for Look Good Feel Better to help 50,000 women each year. These supporters help us reach women with cancer, their family, friends, and medical professionals, and provide education about what they can do to help themselves or others who may be facing a cancer diagnosis. There are over 20 companies who partner with us each year, and each of them offers unique opportunities to get involved. The best way to see the full scope of support is to visit our web site at www.lookgoodfeelbetter.org and check out our corporate partners and supporters on the site.

SDN: Which head knot and/or other knot would you recommend for women to look good and feel better in? Why?

Louanne: In addition to wigs, there are many terrific, stylish alternatives for addressing hair loss during cancer treatment. Each woman’s sense of style, comfort, and creativity is different, so I encourage experimentation with the many available options to find the ones that she loves and are right for her lifestyle, time availability, energy level, and other important factors in her life. It’s an opportunity to have fun and try something new!

A special thanks to Louanne for taking the time to tell us more about this incredible foundation!

For more information on the Personal Care Products Council Foundation and Look Good Feel Better you can visit their website, connect on Facebook, or follow them on Twitter.

Image sources: lookgoodfeelbetter.org, wellbeingofwomen.org.uk, zimbio.com

Dr. Kathleen Ruddy from the Breast Health & Healing Foundation

Interviews and Questions from Scarves Dot Net

Interview with Breast Cancer Survivors

Whether it’s heartfelt anecdotes or inspiring triumphs, the Scarves Dot Net gals love to share stories — especially when they’re incredibly touching. That’s why we’re starting a new series called SDN Spotlight. From influential bloggers to community leaders, we’ve scoured the blogosphere for the most inspiring men and women. So far, we’ve had the opportunity to hear from seven incredible individuals about how cancer has affected their lives.

Today we’re excited to bring you our interview with Dr. Kathleen Ruddy. Dr. Ruddy is a breast surgeon, trained at Memorial Sloan-Kettering Cancer Center. In 2008, she completed the first International Masters for Health Leadership at McGill University and then created the first and only breast cancer foundation (the Breast Health & Healing Foundation) whose mission is to discover the specific causes of breast cancer and use that knowledge to prevent the disease — what she calls the Pure Cure. She is particularly interested in the breast cancer virus and the world’s first preventive breast cancer vaccine, which was developed at the Cleveland Clinic in 2010.

Dr. Ruddy’s mother was diagnosed with breast cancer in 1974 and is still alive and cancer-free today. She shares about her experiences with breast cancer as a surgeon and as the daughter of a survivor on her blog.

Dr. Kathleen Ruddy and her mom

Dr. Ruddy and her mom (in pink)

SDN: Your mother was diagnosed with breast cancer years ago.  Could you tell us a little bit more about her, her battle, and her recovery?

Dr. Ruddy: My mother found a lump in her breast and had a biopsy that was read as a frozen section. She was told everything was fine. But then a few days later, the doctor called to say that on permanent sections the lump was really cancer. She had a mastectomy, radiation therapy, and then she had her ovaries removed. This all happened before breast cancer was something people were aware of. It was pretty scary for her and for the family, but she recovered and has been cancer-free ever since.

SDN: Coming from a medical perspective, what is the most crucial piece of information that the public should know about cancer?

Dr. Ruddy: I think there are a few things people need to know that they probably don’t. There is converging and compelling evidence accumulating that a virus (human mammary tumor virus) is responsible for 40-75% of breast cancer. Very little research money is spent supporting this research, and that’s a shame.

I think most people don’t know about the world’s first preventive breast cancer vaccine. It is 100% effective in preventing breast cancer in three animal models and is ready for safety testing in women. Money is needed to support this research, too. I hope we can move it along quickly.

SDN: You are the founder and president of the Breast Health & Healing Foundation. Can you explain why you started the foundation and share any accomplishments so far?

Dr. Ruddy: When I discovered that the major breast cancer foundations were not pursuing the causes of breast cancer or primary prevention of the disease, I felt I had to create one that would fill this great, unmet need.

In 2010, I created an iPhone app, Breast Health GPS, which was the #1 breast cancer app in the iTunes store for 18 months after its release. I also created a documentary film about the virus, It’s Time To Answer The Question, which was named Best Film of the Year 2010 by Rethink Breast Cancer. I’ve hosted two Breast Cancer Summits on Capitol Hill about the virus and the vaccine and will be hosting a third this month in New York City.

I launched an app for the iPad, Breast Cancer 411, that brings all the latest breast cancer news to users, and I launched an app for all smart phones, Lobby Me Pink, that allows users to send emails directly to their Congressmen on Capitol Hill.  All of my apps are free, and they are all dedicated to empowering women, giving them good information, and teaching them about how they can reduce their risk for breast cancer.

In 2011, I was invited by the University of Michigan Global Health Network to address their conference in Cairo about breast cancer in Africa and the Middle East. I spoke about the virus and the vaccine, and I think I generated good interest in the prevention of breast cancer in countries that cannot afford a race for the cure.

Dr. Kathleen Ruddy and Gloria Gaynor

Dr. Ruddy with Gloria Gaynor

SDN: The Breast Health & Healing Foundation focuses on breast cancer prevention rather than on “a race towards a cure.” Why do you think it is imperative to shift the focus towards prevention?

Dr. Ruddy: Scientists are certain that at least 30% of breast cancer cases can be prevented using known and proven risk reduction strategies, yet less than 2% of all research money is spent doing so. Even though other breast cancer foundations talk and market prevention, if you look at what they fund, it’s easy to see that they are marketing prevention rather than actually trying to do so. It’s a shame. They’ve lost credibility on so many counts, and this is just another way they try to convince the public that they’re doing something productive to prevent breast cancer, when they are really working more for diagnosis and treatment than anything else.

SDN: You are determined to find a “pure cure” for cancer. Where do you find the strength to pursue this goal day in and day out?

Dr. Ruddy: I was born with a good constitution. I was raised in a very disciplined way. I was taught to work hard and well. Passion runs through my veins right alongside my blood. I come by this drive naturally, but I do get worked up even more when I sense an unmet need — like preventing a disease such as breast cancer.

SDN: As a medical professional, you go above and beyond by exploring options, where others have previously given up hope. What drives you to go the extra distance for your patients?

Dr. Ruddy: I’ve written a manuscript, a very rough draft autobiography told in a series of tweets. It’s a fast read; take a peek and I think you’ll see I’ve always gone the extra distance. I guess I like the exercise!

SDN: You have used your blog to provide medical information to others about cancer treatment and research in easy-to-understand terms. What are you hoping that others take away from your blog?

Dr. Ruddy: I want to explain what is often a bewildering subject — breast cancer. Because I have worked my way up the ladder of medicine from secretary to surgeon, I know first-hand how difficult it can be to lie on a stretcher, completely vulnerable and needy, and how valuable a kind word and sound information can be. It can make all the difference in the world. If I can do that for more women than I can actually lay hands on — and I can, via the Internet — then why not?

Quite simply, I love what I do and I think I’ve gotten pretty good at it. I’d like to help other women and make it easier for them to cope with the unknown and the dreaded known.

Special thanks to Dr. Ruddy for sharing with us! To hear more of Dr. Ruddy’s story, you can visit her blog or connect with her on Twitter. And for additional information on the Breast Health & Healing Foundation and ways you can get involved, check out their website

AnneMarie From “Chemobrain”

Interviews and Questions from Scarves Dot Net

Interview with Breast Cancer Survivors

Whether it’s heartfelt anecdotes or inspiring triumphs, the Scarves Dot Net gals love to share stories — especially when they’re incredibly touching. That’s why we’re starting a new series called SDN Spotlight. From influential bloggers to community leaders, we’ve scoured the blogosphere for the most inspiring men and women.

So far, we’ve had the opportunity to hear from six incredible individuals about how cancer has affected their lives.

Today, we’re honored to bring you our interview with AnneMarie Ciccarella. AnneMarie is a native New Yorker, a mom to kids in their 20s, and the oldest of five in a large, close-knit Italian-American family. She is a volunteer for the Dr. Susan Love Research Foundation, and writes about how cancer has affected her life on her blog, Chemobrain.

AnneMarie of Chemobrain

SDN: Throughout your personal journey, you have become a dedicated activist for different organizations — serving as a Patient to Patient volunteer at Memorial Sloan-Kettering Cancer Center (MSKCC) and getting involved with Love/Avon Army of Women. Can you share a little about these organizations and your role within each?

AnneMarie: I first began volunteering at MSKCC because I was involved in a clinical study being conducted at the hospital. I was four years post-chemotherapy and something wasn’t right. I then realized that it was through the donations of others that made the study even possible. Because of the results of the evaluation, I realized I couldn’t “do numbers” any longer, which presented a problem — I was doing high-level accounting at the time. I felt a bit like Meryl from Bridges of Madison County, asking myself, What now?”

I then participated in a writing program called “Visible Ink” — which is available to all MSK patients — and again realized it was the time of volunteers that afforded me what has been a life-changing gift. It was my volunteer mentor who helped dust off my writing skills and guided me through the mechanics of launching what was supposed to be a space for me to “unclog” my brain.

Because I had received so much through the generosity of others (with their money and with their time), I began looking at volunteer opportunities for myself at MSKCC. As a Patient to Patient volunteer, I speak with women who are newly diagnosed or still in treatment.  There are things that can only be truly understood by someone who has lived through a cancer diagnosis and treatment. I visited patients on the surgical floor, and we have monthly meetings where we discuss many aspects of patient care at the hospital.

I began volunteering with the Dr. Susan Love Research Foundation and the Army of Women (AOW) initiative because I believe in the work of Dr. Love. She is devoting her life’s work to determine the cause of breast cancer. Rather than continue to find ways to kill cancer cells, her approach is different. She wants to understand the cause of breast cancer with the hope that we can ultimately prevent the disease in the first place.

I staff events on behalf of AOW hoping to get more women to enroll in the database.  There is a big problem filling clinical studies, and the Army of Women sends out email notifications to let women know when a research study opens and participants are needed. The quicker we fill studies, the quicker we can find answers. People are raising money to fund the studies, but if the researchers can’t fill the studies, in a way, the money is not being used efficiently. An empty lab or a half-filled study still costs money. Research saves lives.

SDN: You are also an advocate for The National Breast Cancer Coalition (NBCC), which has started the Breast Cancer Deadline 2020 Initiative. Can you talk about this initiative and what people can do to help meet this deadline?

AnneMarie: NBCC recognizes that there has been little meaningful progress in decades. They have been instrumental in giving patients a voice at the table when research grants are being reviewed. Because of their efforts, I am a consumer reviewer on the Department of Defense Congressionally Directed Medical Research Program. I had the privilege and honor of being invited to sit on a review panel alongside scientists from many major research centers.

The biggest thing that people can do to help advance the goal of eradicating breast cancer is to do whatever they can to advance research. Take precaution with monetary donations to any organization. If donations are being made for research, always make sure the majority of the donation will be used to fund research.

SDN: On your blog, you often talk about friends who are also battling cancer and emphasize the importance of telling their stories. Can you explain where you find the courage to continuously fight for others, as well as why it’s important to you to share their stories?

AnneMarie: I think telling our stories helps others realize they are not alone, and it helps us to incorporate the reality of a cancer diagnosis into the tapestry of our lives. Not everyone is comfortable sharing in such a public space, but I would hope that anyone with any life-threatening or other chronic illness has at least one person who will listen. I think it’s so important to have our feelings heard and our fears validated.

blogger AnneMarie Ciccarella

SDN: Your mother, who is one of your biggest supporters, was declared NED (No Evidence of Disease) — and then things suddenly changed. You mentioned that you were “supposed to be a daughter, not a fearless friend to her.” Could you tell us a little bit more about her and your relationship during her battle with cancer?

AnneMarie: About a year ago, several of us began to refer to ourselves as “fearless friends.” We are breast cancer patients who were diagnosed at early stages. Those with metastatic disease often talk about how they feel isolated. Their reality is often our worst nightmare. They will be in treatment for the rest of their lives, and many of them don’t have the energy to make sure their voices are not lost. The Stage IV patients need to know that those who are advocating for meaningful research are advocating on their behalf, too.

In January, my mom was diagnosed with a late distant recurrence. My mom had two breast cancer diagnoses — the first one was in 1987. She underwent a mastectomy and chemotherapy that was even more barbaric than what is administered today. She was by my side when I was told I had cancer. Just months after I completed my chemotherapy, and weeks after my dad died, a new cancer was found in her other breast. She had a second mastectomy to remove her other breast and was put on an aromatase inhibitor. That was in 2007.

She passed her five-year mark and was still taking Arimidex when our oncologist found a spot on her rib. The biopsy confirmed our worst fears, and I still don’t think I fully grasp the fact that my mom is now a Stage IV patient. She began treatment, and her first scans will be done later this month. Hopefully, this treatment is working and it will continue to work for a long time. She is tolerating it well. Last week, we were scheduled to do an interview together. When I asked her if she would be interested in joining me, we both laughed at her reply: “I can see you are pulling me into your world.” I told her she was already in my “world.”

My mom reads my blog. She’s been my biggest cheerleader since I stepped into social media, and she supports all of my advocacy efforts. When I completely invaded her privacy by sharing her diagnosis on the blog, she was so taken aback by the support and love left in the comments. Every so often, she will email all of her friends and family with a link to something I am doing. I know she sent that blog link to everyone with instructions to “just read the comments.” She was so overwhelmed with gratitude.

SDN: You discussed the misconceptions of lung cancer in a recent post. Are there any other assumptions or misconceptions about cancer and metastatic cancer that you would like to shed some light on?

AnneMarie: Lung cancer is stigmatized, and it is terribly upsetting. With lung cancer patients, they are are often asked, “Do you (or did you) smoke?” More than any other cancer, there is tremendous blame placed on the patient.

With breast cancer, one of the first questions we are often asked is, “Is it in your family?” The truth is, most breast cancers are “sporadic.” There is no BRCA mutation and no family history. Too many incorrectly think that no one dies of breast cancer any more. The annual number of deaths due to breast cancer remains virtually unchanged for decades. Very little of the research is done specifically on metastatic disease.

Cancer is a scary disease, and I think when these questions are asked, on some level, people want to believe there is a reason why we developed cancer. The fact is that while there are many things we can do to reduce risk, no cancer is preventable. So many people do all the right things and still develop cancer. With breast cancer, 30% of those of us diagnosed at an early stage will have our cancer spread. Metastatic breast cancer is terminal. Five years is not a guarantee. Early detection is not a guarantee, but early detection, in most cases, does afford the best shot at a good outcome. There is no place for blame in any of this.

SDN: Your blog, which started as a tribute to your father and a way to relay your medical procedures to close friends and family, has become much more than that. What do you want your readers to take away from reading your blog?

AnneMarie: I hope that those who read my blog realize they are not alone, that there are so many people who are willing to reach out, to share their fears, to celebrate their victories. I hope that readers will learn about their own medical situations and understand they are vitally important members of their medical team.

SDN: You said, “Maybe I’ll make a difference, or not, but doing nothing feels selfish.” Can you give a few examples of ways that others can make a difference?

AnneMarie: We can all make a difference. We can help on a personal level, or we can be part of something much larger than ourselves. Each is equally important. Offer to help if you have a friend that isn’t well. Listen if they want to talk. Don’t ask what you can do since most people won’t know how to answer — instead, call if you are going to the market to see if they need anything. If you have ten dollars to spare, pick up some non-perishable items like paper goods or cereal and just leave the bag at their door. If someone has younger children, ask if you can meet their child at the bus stop or if you can provide a ride for other activities. Offer to drive them to a doctor appointment if you have the time.

Some people prefer to be alone for some appointments, so it’s a good idea to be clear. “I’ll drop you off” or “I’ll be waiting for you in the car” or “Call me when you are finishing up” are good phrases to say. Know that some people do isolate themselves, but don’t stop trying. If you manage to do one small thing to lighten someone’s burden, it’s not a small thing. You’ve made a huge difference.

On a larger scale, there are organizations in almost every community. Grassroots groups depend on volunteers — call and ask if there is something you can do to help. Even if you can only spare an hour each month, every hour helps. We can all help researchers begin to unlock the mysteries by joining Army of Women. If eligible, consider joining a study. The studies being filled are not clinical drug trials; they are observational studies. The success of the researchers will depend upon how much we are willing to help.

Consider enrolling in the Health of Women Study, which is another initiative of the Dr. Susan Love Research Foundation. All women can participate. We have the answers in our bodies, and I can’t think of a better or easier way to make a difference that has the potential to impact so many!

To hear more about AnneMarie’s story and ways you can make a difference, be sure to visit her blog. You can also connect with AnneMarie on Twitter.

Many thanks to AnneMarie for sharing her story with us!