With Care and Love: Hand in Hand

Diane Fine kicks off our National Family Caregivers Month blog series with a post about the love and support she gave to her late best friend, Katherine Mendez.

On October 15, 2015, my best friend lost the fight she could never win. Metastatic breast cancer allows for no survivors.

Our journey began in June 2014. I say our journey because that is what it felt like. For 16 months, it would be the largest part of my life. Let me go back…

Katherine and Diane

Katherine and I were getting ready for a trip at the end of August. We were excited because she was near the five-year mark of being declared cancer-free.

Katherine called to tell me she was bleeding. It was thought to be cervical cancer. Though scared, we were told a hysterectomy would cure it. Twenty minutes after the surgery started, the surgeon informed me that cancer had gone into her cervical wall and pathology reports concluded it was the spread of her breast cancer, making metastatic, or mets. I remember sitting there, alone, thinking that I had to call people and tell them she has metastasis. From that to going in with the dr. to tell her, it’s a blur.

We were told that the cancer had become triple-negative (it was previously ER-positive). As Katherine sat crying, frightened, I promised that I would be with her until the end. I didn’t know that would mean sitting for 6-8 hours each week, worrying each time a scan was due, watching her suffer.  She wanted more information but was afraid to look. I joined several metastatic groups that were open to caregivers. One of these was where I met the people who would form METUP.org (I am now on the executive council).

I researched for hours. I needed to find hope. We sought three opinions.  I made sure I could take Katherine to weekly chemo, doctor’s appointments, scans. I stayed with her every other week for two-three nights. Opposite weeks she had her 15-year-old son, so it was done in a day. I live in Massachusetts, she was in Maine. I cried with her but mostly I cried alone or with the people from the support groups. Many friends pulled away saying I was too involved in cancer or should let others (who?) care for her. I felt very alone.

The backstory of our friendship is that we had found each other four years ago.  Katherine and I were good friends in high school and like many we drifted in our 20s. I found her through Facebook. Katherine and I both felt an instant reconnection. In fact one of my fondest mementos is a card she made. Connected by a red thread were pictures of us as teens, with a proverb explaining that we were destined to find each other again no matter time or place. We both thought we’d have many years to continue our friendship. However, that wasn’t to be.

Despite Katherine’s cancer, we had fun. Each week in chemo we’d keep entertained, at times with a competitive game of Boggle. I was privileged to be able to finally get her to Montreal.  Katherine was always a peace and social justice advocate. I had done my share of protesting but she reawakened that in me. She walked the walk in a way few do.

In May, Katherine took a break from chemo because of side effects. The next scans showed the cancer had spread extensively. We were both devastated.   Continue reading

Thorlos Consumers Choose Living Beyond Breast Cancer

Thorlos supports Living Beyond Breast Cancer this month and beyond with its padded socks specifically for people receiving chemotherapy to treat the disease. 

Thorlos became involved in the cause in 2007 after understanding it had the responsibility to take an active role. A group of employees joined a survivor in a three day fund raising walk that totaled nearly 60 miles. We learned so much that weekend. First, we were surrounded by a sense of caring and love that was incredibly strong yet impossible to put into words. We also quickly saw that our sock products – that are fabulous for foot and blister protection – were “sorely” needed (pun intended). The only question was how should we participate?shop.thorlo.thumb

In the first year we supported a single organization and quickly learned our consumers wanted us to also help other organizations that had helped them. Being a smaller brand we do listen closely to our consumers. Through their encouragement we decided to have them designate how our donations should be allocated. Our program donates $1 from each pair of pink padded Thorlos® sold to a worthy Breast Cancer Charity. Initially it was on two sock styles. We have now increased it to six styles including one for men which can be seen on our website. As you might guess LBBC was one of the organizations our consumers insisted their $1 be given to.

They were right! We have learned that LBBC is a terrific organization of people and programs devoted to the newly diagnosed, young women, those living with metastatic breast cancer, African-Americans, those diagnosed with triple-negative breast cancer and LGBT people affected by breast cancer. It complemented the other organizations our consumers wanted their donations to go to.

So our active role is to help people participate year after year in fund raising walks and runs by protecting and taking care of their feet with our specially padded sock products. This year we asked the Institute for Preventive Foot Health – another nonprofit organization we support – to develop and fill three information voids important to fund raisers and those in the midst of fighting the disease. With LBBC we encourage you to review each of the following articles:

Cause Walking: How to Protect Your Feet Before, During and After the Event

Benefits of Regular Exercise for Women with Breast Cancer

How Chemotherapy Can Affect the Feet

Please contact us if we can help you or a loved one with their foot health needs. You will be surprised the difference Thorlos “heart and soul” approach can make (pun intended).

Uniform Advantage and ChefUniforms.com are Excited to Partner With Living Beyond Breast Cancer!

Breast cancer has always been a passionate subject for Uniform Advantage’s employees, as this disease has affected some of our very own. At UA, we are a tight knit family unit with a large female demographic who are passionate about breast cancer awareness. We stand together with Living Beyond Breast Cancer in promoting awareness, education and support services for people affected by the disease.

Style PC82CEP_Celebrate Pink Black Breast Cancer Scrub Print

Uniform Advantage has been involved in charitable efforts with breast cancer awareness and research since 2009. For several years now, we began designing pink ribbon- themed scrubs to further show our support those impacted by breast cancer. We are proud to say we’ve made hundreds of pink ribbon scrub tops and jackets that are proudly worn by nurses nationwide. Our valued customers are the true heroes giving back with every shift they work. For the first time, through our sister brand ChefUniforms.com, we have designed a male and female chef coat to engage with our chef and hospitality customers about this disease in order to help spread awareness.

Lori Nadeau-Dunlap, vice president of marketing, has a deep appreciation for Living Beyond Breast Cancer’s vision. “We have decided to partner with this great organization because of what Living Beyond Breast Cancer stands for. They connect people with reliable and trustworthy breast cancer information and a community of support so that no one affected by this painful disease should have to go through it alone and we empathize with everyone affected, women and men.”

In partnering with Living Beyond Breast Cancer, Uniform Advantage and ChefUniforms.com will donate $1 from the sale of select breast cancer scrub prints and chef coats below. Check out LBBC’s Shop to Support Section to shop our products and support today!

2models with Breast Cancer Scrubs Prints_UA

UA will donate $1 from the sale of each Wild and Pink Black (on the left) and Celebrate Pink Black Scrub Prints (on the right) to Living Beyond Breast Cancer.

2models with Breast Cancer Chef Coats_ChefChefUniforms.com will donate $1 from the sale of each Wild and Pink Black Chef Coat for Females (on the left) and Traditional Fit Chef Coat in Hot Pink for Males (on the right) to Living Beyond Breast Cancer.

Supporting Through Style

Veza founder, Brandon Michaels, came up with the idea for Veza—a line of trendy wristbands in 12 colors that support 12 different charities—when he was 16 years old. His passion for sporty and fashionable wrist-wear always had him searching for cool, new styles. Brandon eventually decided it was time to modernize the wristband and give it his own twist.

shop.2015.veza.product photo

Rather than support just one charity, as other companies tend to do, I decided to have each wristband color support a different cause that meant something special to me. I thought it would be cool to let supporters decide what charity they want to give back to.

The unfortunate “commonness” of breast cancer was something I had seen around me and I immediately decided that the Pink Wristband would support a breast cancer cause. While searching the many nonprofits that support breast cancer and breast cancer awareness, I came across Living Beyond Breast Cancer.

What I like about LBBC is that it doesn’t focus on research or medicine. Instead, it is one of the only nonprofits, rated four-star by Charity Navigator, that focuses on helping better the lives of those diagnosed and their families.

For the second year in a row, in honor of Breast Cancer Awareness Month, every purchase of the Pink on White Veza wristband is offering additional support to Living Beyond Breast Cancer: 20 percent of sales from each Pink on White Veza will be donated to LBBC in support of their goal to connect people with trusted breast cancer information and a community of support.

Learn more on Veza’s website.


Connecting You to the Many Voices of Those Living With MBC

Catherine Ormerod, MSS, MLSP, is Vice President, Programs and Partnerships at Living Beyond Breast Cancer. responsible for overseeing the implementation of all direct service and partnership initiatives in support of Living Beyond Breast Cancer’s mission. 

Cathy (1)_0Last year as part of its long-standing commitment to those living with metastatic breast cancer (MBC), Living Beyond Breast Cancer launched an advocacy program called “Hear My Voice.” We introduced the program on Metastatic Breast Cancer Awareness Day, the one day in October dedicated to the raising awareness of the needs and voices of people with MBC.  Because women living with MBC will always be in treatment, their outlook and concerns are different from women treated for early-stage breast cancer.  As an organization that represents all people impacted by breast cancer, LBBC is committed to building public understanding of the different stages of the disease.

The first initiative in this program highlighted the many voices of MBC in a blog carnival. On October 13 we posted one blog post every hour, on the hour, for 13 hours. These diverse and riveting stories from women and men living with the diagnosis quickly became our most widely read stories on the blog.

We launched the second phase of the program — the Hear My Voice Outreach Volunteer Program — in the spring of 2015. This  10-month volunteer commitment teaches and refines participants’ communications skills and asks them to find others with MBC in their communities and connect them to resources and information.  We also ask the volunteers to create projects that they work on during their time as volunteers. In addition, each of them participated in an online public education campaign about MBC in September called #BeyondtheBreast. Through strong images on social media, this campaign made the point that metastatic breast cancer is cancer that has spread to other parts of the body.

“We at LBBC learned during the past year that the commitment of our volunteers is both deep and diverse.”

With all of this, we at LBBC learned during the past year that the commitment of our volunteers is both deep and diverse. Their activities and actions have far exceeded the expectations we set for them in the program.  They have sat on research panels, pitched their stories to local and national news organizations, planned rallies, written books, launched support programs, and met with legislators to demand more research dollars are spent on understanding the process of metastasis.  And they connected hundreds to information and resources, breaking the isolation that study after study confirms is experienced by so many with MBC.

MBC blog feature HMV volunteers 2015

Our Hear My Voice Outreach Volunteer Class of 2015.

Today, as we recognize Metastatic Breast Cancer Awareness Day, we will highlight some of our most moving blogs written by those living with advanced breast cancer from this past year and our previous blog carnival (see below). Our volunteers continue their work in a stunning variety of ways to push forward change.  And because many others are focused on changing the trajectory of MBC — volunteers, nonprofit organizations, researchers and others — we have the opportunity to move the conversation about MBC forward and thus move closer to achieving our shared vision: ending metastatic breast cancer.

We began the program with 31 volunteers and last month lost a devoted volunteer, dear friend and powerful voice to the disease. We dedicate our efforts this month to the memory of Marcia Taylor.

Please join us and share what you learn. Be a part of expanding the conversation around breast cancer and saving lives. Find out more about MBC, research and resources.

Read a selection of powerful and inspiring stories of women and men living with MBC:

Paying it Forward: Scarlett Gibbs’s story written by Nicole Katze, LBBC’s editor and manager, content development

The Hope of Many Summers After a Metastatic Triple-Negative Diagnosis: An inspiring post written by the late Annie Goodman

Living the Life of Cliches (That Are True): Scott Cotlar writes about common sayings people with MBC hear many times over.

How I Manage Scanxiety: Written by LBBC Board Member Amy Lessack.

Getting the Support You Need as a Young Mom With Metastatic Breast Cancer: The late Terri da Silva on support for young moms living with MBC.

‘You Beat It By How You Live: The Late Norma Pitzer-Kelly writes about late ESPN anchor Stuart Scott’s approach to coping with advanced cancer.

Thriving, Despite Almost 2 Decades of Breast Cancer: LBBC Writer and Content Coordinator Erin Rowley profiles Sherry Lawson, who discusses living with metastatic breast cancer and navigating healthcare as an out lesbian woman.

Getting Off the Couch for Wellness: Sarita Joy Jordan writes about finding a passion for exercise and maintaining healthy living practices after an MBC diagnosis.

When Breast Cancer Awareness Is Every Month: This blog post, which kicked off our #BeyondTheBreast Campaign, was written by LBBC Board Member Ayanna Kalasunas.

From the Start: De Novo Metastatic Breast Cancer: Blogger Beth Caldwell on finding out she was de novo metastatic, coping with diagnosis and the benefits of community.

When the Breast Cancer Went Beyond the Breast: Mandi Hudson’s blog post is about discovering she had recurrent stage IV disease.

The Long-Term Merry-Go-Round: 13 Years With Metastatic Breast Cancer: Award-winning blogger Jill Cohen on living long-term with MBC.

Communication, Trust and Dignity in Metastatic Breast Cancer Care: Laura Snyder’s blog post bout making treatment decisions and clear communication in health care.

Breast Reconstruction and You: Everybody’s Doing It, So Why Don’t We?

Kitt Allan continues our Breast Reconstruction and You Blog Series in anticipation of our Twitter Chat on October 21, Breast Reconstruction Awareness (BRA) Day. We posted part one earlier this week. Learn more about Ms. Allan and her apparel, for which  proceeds of sales benefit LBBC.

IMG_8360-1 Reconstruction is a topic near and dear to my heart even though I haven’t had it myself. I was diagnosed with triple negative breast cancer when I was four months pregnant. The doctors on my team – a surgeon, an oncologist, and a high-risk OB, all advised quick action since my tumor was very aggressive and we needed to get as far as possible in my treatment before I gave birth. About a week after diagnosis I had a unilateral mastectomy and then started chemotherapy. I had asked my surgeon if I should have a double mastectomy but she didn’t see it as a good option because my right breast was healthy and she didn’t want to keep me in surgery any longer than necessary.

At the time reconstruction wasn’t an option. The surgeons agreed that with all the body changes of pregnancy it might be as long as two years before my body would settle down enough for a good reconstruction. At the time, hearing that didn’t bother me that much, as you might imagine my main goal was to have a healthy baby and be healthy enough to be a good mom.

I was fit for a prosthetic, or form as I usually call it, and began wearing it. And over the days and months, having a form on one side and a breast on the other became my new body, and surprisingly I became comfortable with it. Sometimes now I even forget that I don’t have two real breasts.

Reconstruction can be made to seem like an inevitable part of the treatment process. Every time I visit my breast surgeon she tells me about all of the new surgical techniques and I have to admit that options have come a long way and more and more women are happy with the results. I listen, always wondering if she’ll say something that changes my mind, but that hasn’t happened yet.

The only time I ever considered reconstruction was while shopping for lingerie and swimwear and I felt limited by the choices available to me. I wasn’t ready to resign myself to frumpy clothes, so through my business I give survivors more choices so that we can all feel comfortable in our own skin and more like ourselves again. I think there are a million great reasons for women to have reconstruction but finding garments that make you feel like yourself shouldn’t be one of them.

“When it comes to reconstruction, and just about anything else in life, I think each woman should decide for herself what she wants to do with her own body.”

When it comes to reconstruction, and just about anything else in life, I think each woman should decide for herself what she wants to do with her own body. From my own experience, I also know that not all women can have reconstruction even if they want it. I design garments that take into account all different choices and realities. While attending LBBC’s Wellness Weekend a couple of weeks ago I was struck by the number of women, many of them young, weighing their options for reconstruction – thinking seriously whether to have it, when to have, or how to have it. I was glad to see them getting information not only from doctors but also from other women who have been there. All women should have as much information as possible to make the best choice for themselves.

 I wish that women who can’t have reconstruction, or don’t choose to, had the chance to meet more women like themselves so that they didn’t feel so alone. The truth is we aren’t all doing it and the recent JAMA study showed nearly 60% of women don’t choose to or can’t have reconstruction. I had no idea there were so many women like me.

Over these last few years I continue to educate myself and I am still happy with my decision to stay as I am. First, I couldn’t have reconstruction and once I could I found that I didn’t want it. This is my body now and I’m comfortable with that.

Tweet about breast reconstruction with Kitt and our panelists on October 21.

Breast Reconstruction and You: Let’s Discuss Mastectomy and Reconstruction

My Fabulous Boobies writer and breast cancer advocate Nicole McLean kicks off our Breast Reconstruction and You Blog Series in anticipation of our Twitter Chat on October 21, Breast Reconstruction Awareness (BRA) Day. A version of this post appeared on her blog in October 2012. It was reposted with her permission.

Sex and Intimacy_Nicole McClean

Hello boys and girls. Today we’re going to discuss mastectomies and breast reconstruction. Don’t look at the screen that way… I’ll keep it easy. I promise.

I’ve attached a picture to this post of two women who are survivors. The sister in the first picture is posing with so much sass, and showing off her mastectomy scar. The second picture is showing the scars from a breast reconstruction surgery. I selected these two pictures because these two women represent me.

My Mastectomy Story

Four months after I started chemotherapy, I had a modified radical mastectomy.

Definition: a mastectomy is surgery that removes the whole or as much of the breast tissue as possible.

There are different types of mastectomies, but basically the purpose of a mastectomy is to remove the cancerous breast from the body in order to prevent the spread of the cancer to other parts of the body. It is (in my understanding) a life-saving measure.
I struggled for months to accept losing my breast. I could not grasp the concept that I had to lose a part of my body in order to save my life. However, because of different things about my cancer, as much as I wanted to save my breast it was not the best course of action.

In my case, I had multiple tumors in my breast tissue. At least one tumor was very, very close to my chest wall (which meant that it was close to my bones). And a biopsy revealed that the cancer had started to migrate away from the breast and had entered my lymph nodes (which meant that if it was not caught at that time, it would have entered my blood stream and could have ended up in other organs). So after debating with my medical team and pleading with God for some other option for months, I eventually accepted that losing my breast was the best course of action for me.

Each Survivor Has a Different Choice to Make After Their Diagnosis
Not every survivor has to face this decision. Some survivors do not have to have any breast surgery. Those cases are caught very early (perhaps from a mammogram or some other test that reveals cancer cells) and they are handled with chemotherapy or radiation (or both) without surgery.

Some survivors are eligible for a lumpectomy, which is a breast-sparing procedure that removes just the cancerous tumor and leaves the majority of the breast intact. I wasn’t that fortunate.

[insert advice here:  This is why being proactive about your breast health is important. The earlier the cancer is detected, the less invasive the treatment is and the higher the likelihood that the cancer can be removed completely.]

Now, Let’s Discuss Breast Reconstruction – I Chose a TRAM Flap Proceduremastectomy photo

The picture to the right shows a woman after she had a mastectomy. The second picture is a sister showing her reconstruction scars and her reconstructed breast. There are a lot of ways that a woman who chooses to have her breast replaced can do that. She can have implants. Or she can choose to have reconstruction that uses her own body tissue (like I did) to reconstruct a breast. There are a few different types of procedures that utilize your own tissue. The surgery I had was a TRAM flap.

Definition:  TRAM flap (transverse rectus abdominus muscle) is a surgical procedure that creates a new breast mound using tissue from your belly that is tunneled under your abdominal muscles and up to your chest.

The procedure is very detailed and requires a lot of surgery. But, it is a one-shot deal. Meaning, unlike breast implants, you do not have to have several procedures before your breast is done. I went into the hospital with one breast. I came out of surgery 12 hours later with two. It is not the same way for implants. However, with implants, the surgery is not as invasive and it works if you are not a candidate for a flap procedure.

Life after the TRAM

As you can see from the picture, there is a long scar that stretches from hip to hip along your bikini line and then there is a large scar around the breast. You will also notice that there is no nipple and no areola either. Lemme tell you… the first time I looked at my noobie (noobie = new boobie) I was not prepared for the Barbie-like look. (laughs) However, in all honesty, the option for what amounted to a tummy tuck at the same time I’d get a new breast was sort of the selling point for me.

You can laugh… yes I’m vain like that. And I’ve been pretty happy with my flatter tummy too. My theory was… if I’m going to lose my breast, get kicked into early menopause and lose my fertility… at least I can be gorgeous after its all said and done.

So, there ya go. Now you know the basics about losing a breast and gaining a new one. There are a lot more details that I could go into but… I’m trying to take you slowly so that you’re not overwhelmed and freaked out. (laughs) But this is it.

Why I chose the TRAM flap
I spent 10 months with one breast. I was miserable as hell about it. I felt like a lopsided freak. Even though I eventually came to accept it. I never liked wearing my prosthesis. I hated that even after I purchased the largest prosthetic breast I could find, it still was significantly smaller than my natural breast. I hated that I had to stuff my bra with the prosthesis to try to look even. And I hated that I had to have a breast reduction so that my natural breast was the same size as my noobie. I know… that’s a lot of hate right there. But its true. I fought and dragged my feet through all of this. But, now that I’m on the other side… I’m so much better about all of it. And… I can wear a bikini now. (laughs)  It is the little things in life that make me happy. I have about four bikinis now — before cancer I would be hard pressed to even put on a bathing suit. I will probably have many more before its all said and done.
I’m not suggesting that wearing a bikini makes all of this worthwhile. Because, well, that would be silly. But I am telling you that life does go on and you can reclaim some of your self-esteem and walk into your new normal with a happier outlook. for me, it was important to have two breasts. For some women it is not. Some women opt to remove both breasts. Some women opt to never replace their lost breast. It is a very personal choice and journey. There is no right way to do it. You have to do what works for you.

Tweet about breast reconstruction with Nicole and our panelists on October 21.