With Care and Love: The Family of Caregivers

As National Family Caregivers Month comes to a close, Living Beyond Breast Cancer’s Community Engagement Manager Lynn Folkman reflects on the care, support and love she received from her family.

I view caregiving as a way to give and receive love. A few months before I was diagnosed with breast cancer, I was one of my mom’s primary caregivers. When people ask me about caregiving, I always say it was one of the hardest things I have ever done and also one of the most rewarding things I have ever done; and I would not have wanted it any other way.  Yet, when the tables turned and I became the patient, it was hard for me to accept being the one who needed care. However, those who love you fiercely jump into the role of caregiving without hesitation.

Last year, I wrote about my “rock star” caregiver, my sister Deb. I hope that everyone has a caregiver such as my sister. I was also fortunate to have the full support of my sister’s family. They were the ones that supported my sister when she needed to rejuvenate from her caregiving role. As they supported her, she in turn could support me. However, they did not stop there, they too supported and loved me fiercely with their own acts of caregiving.



I was single at the time of diagnosis and I was scared. I never regretted my life choices, but with a cancer diagnosis, I really felt alone. I was not sure how I was going to do it all, work full time and keep my home afloat all while going through treatment. I was afraid and so many thoughts crossed my mind, would I be able to have the energy to work, could I afford to keep my house, how could I go through this alone, so many unknowns and so many questions swirled inside of me.

It took an illness to shine a light on what had been my truth: I had a loving family by my side. I was always close with my sister’s family; my brother-in-law Jerry was more like a brother to me, my nephew and niece, Josh and Julie, were like the children I never had. I often took family vacations with them and for a time I lived with them as well. I was there for all the celebrations of the family and the kids growing up, birthdays, bar and bat mitzvahs and Sunday dinners. During my diagnosis and treatment I leaned on them all just a little bit more than usual; and in the process of allowing them to care for me brought me even to closer to all of them. They each gave in different ways. No matter their approach to caregiving, it provided me a sense of calm, peace and security. Their gestures of kindness and caregiving, big or small, added to my healing and showed me how deeply loved I was.

It just so happened that my brother in law outfitted the chemotherapy infusion chairs in the healthcare facility where I was being treated. I know, weird huh, what are the chances? To ease my mind and comfort before I began my treatments, he arranged for a private tour for me to walk through the infusion rooms. Just a small gesture and yet seeing where I would be treated, put my mind at ease. Jerry was there every step from beginning to end as my cheerleader. He experienced every high and low along with me.

My nephew Josh would call me after treatments, checking in on me. When I finished my last Herceptin treatment, he called me with enthusiastic congratulations. Just to hear his smiling voice and yes feel his love on the other end of the phone made me power through my treatments. If he was scared, he never let on. Every time that I saw him, he was always at the ready to give me one of the biggest loving hugs around letting me know in his own way that he would be by my side and love me through whatever showed up in my life.

My niece Julie was studying abroad during her last semester before graduation. She sent me a card that I still have to this day, which on the front has a cartoon picture of a fuzzy sheep and says “Ewe Are My Sunshine!” Inside the card reads, “Dear Lynn, Even though skies might be grey right now, you still shine brighter than the sun. Your sunny disposition is your greatest asset (aside from your fashion sense!). I love you, Julie”. That card hung in my house (and still does) in a location that I would walk by everyday. It served to remind me daily that I was still the same person inside and her Aunt, which she very much loved.

Before I started chemotherapy, we all piled into the car, Deb, Jerry and Josh to drive to Penn State to see Julie graduate from college. Although, I was tired from just having completed surgery and slept in the car most of the ride, it was a wonderful day. I was so proud of my niece and so thankful to be part of this loving family. The day and the moment provided me a sense of normalcy away from appointments, tests and doctors. It re-framed my present moment. Sure, I have breast cancer and I was just about to begin chemotherapy, but these joyful moments and their loving gestures served to remind me who I was deep inside that cancer could not take away.


I spent a great deal of time at their home, especially during the exhausting times of treatment. They would make sure that I would eat, and rest, but most importantly they fed and bolstered my spirit emotionally. I would often thank my brother in law for being so kind, he would respond, without a second thought, “of course that is what you do for family”, in his mind there was no other option but to give, support and love. This concept on the surface seems simplistic, and yet somehow can become complicated to implement throughout life. If we all applied this simple rule and to have the attitude and the mindset, of course you give of yourself, of course you give of your time, indeed the world would be a much more loving place.

Thank you Jerry, Josh and Julie for supporting Deb while she cared for me. Thank you for believing in me and loving me fiercely even when my light felt dimmed by life’s circumstances. Your love changed my life and continues to do so. The saying goes that you can choose your friends, but not your family. I have to say in this case, I could not choose any better than those who I have the pleasure and honor to call family.

Read other blog posts in our With Care and Love series.

The Dirty Dozen – Problematic Chemicals in Cosmetics

AILLEA founder Kathryn Dickinson discusses how to navigate toxin-free beauty. Read on to learn about the chemicals found in everyday beauty products as well as learn about a special giveaway we’re holding with AILLEA. For more information about environmental health, check out these resources from our August 2015 webinar.

Did you know that women put an average of 168 chemicals on their body a day? Our skin is our largest organ and absorbs 60% of everything we put on it directly in to our blood stream (think about how hormone or nicotine transdermal patches work!). There are over 10,000 chemicals being used in our personal care products and even more shocking – one in five personal care products have ingredients that may be linked to cancer! This makes navigating the beauty aisle can be daunting and overwhelming.

Aillea Giveaway Blog Photo

Below is a list of the cosmetic version of the “Dirty Dozen” – top 12 chemicals used in cosmetic and beauty products that you should consider avoiding. I’ve summarized them for you, but before it gets too scary, know that all products at AILLEA, in addition to being high-performing, are safe and toxin-free. Added bonus: if you use the code LBBC at checkout you get a 5% discount and we make a donation to Living Beyond Breast Cancer. So get your products (and your trash) ready and read on to see which harmful chemicals are in your beauty cabinet:

  1. BHA and BHT – Butylated Hydroxyanisole and Butylated Hydroxytoluene (tip off right there if you can’t pronounce the ingredient). These are commonly found in moisturizers and other cosmetics as a preservative. They can disrupt hormone function and can cause skin allergies, and also have been linked to kidney and thyroid problems.
  2. Coal tar dyes (p-phenylenediamine), toluene, hydroquinone, and phenol carbolic acid – These just sound disgusting. They’re also among the few products for which the Food and Drug Administration have issued consumer advice on the benefits of reducing use. These are found in skin lotions, anti-aging creams, hair dyes and other skin and hair products.
  3. DEA and related ingredients like MEA, TEA – These are used to make shampoos, soaps, and other products creamy and foamy. They are also used in oil refineries to remove hydrogen sulphide from process gas emissions. Are you sure your hair is THAT dirty? These are skin and eye irritants, have been linked to liver cancer, and have been declared toxic for the environment and for aquatic organisms. Save Nemo and stop washing these down the drain!
  4.  Dibutyl phthalate – Use in nail polish as a “plasticizer” and in fragrance. This has also been banned in the EU, may be linked developmental defects, and increase the ability for other chemicals to cause genetic mutations. The worse part is that because it’s used in fragrance, some companies don’t have to list this in the ingredients because it’s part of their “secret recipe.” The secret is killing you isn’t it?
  5. Formaldehyde-releasing preservatives (DMDM hydantoin, ureas, methenamines, etc) – Just to start, formaldehyde is used to embalm a body to preserve it and reduce the speed of decomposition. If that doesn’t convince you, read on. It is a known carcinogen, can irritate the skin and eyes, and cause asthma and nausea.  It’s used in hair straightening treatments and relaxers, baby shampoos, soaps, and many other cosmetics. It’s also used in toilet bowl cleaners…enough said.
  6. Parabens – These are the most widely used chemical in cosmetics so get ready to part ways with many of your beloved but harmful products. They alter hormone levels and may play a role in increasing one’s risk of developing breast cancer.
  7. Parfum (fragrance) – Just because the word is French doesn’t mean it’s elegant. This term actually includes about 3,000 chemicals and is used in perfumes, lotions, creams, and deodorants among other products. Of the 3,000 chemicals, most have not even been tested for toxicity. Those that have may cause allergies, asthma, irritate the skin, and have been linked to reproductive issues.
  8. PEG compounds – These are used to thicken and soften creams and lotions. They are also used as laxatives. Not something you usually want to put on your face. It may be listed as propylene glycol in the ingredients, and may cause harm to the nervous system, skin irritation, and organ and reproductive toxicity. It may be contaminated with measurable amounts of ethylene oxide and 1, 4-dioxane, both of which are carcinogens.
  9. Petrolatum – This is a petroleum product; yes the same substance from which gasoline is refined. It’s used in products to form a hydration barrier and makes lipsticks shiny.  It may be linked to cancer and because of its danger, the EU has restricted its use in cosmetics.
  10. Siloxanes – These are used in moisturizers, treatments, deodorant, and lotions to soften the skin and dry hair faster.  They are also used in implants, windshield coating, and building sealants. It’s a known endocrine disruptor, may impair fertility, and may influence neurotransmitters, and not in a good way.
  11. Sodium Laureth Sulfate – Even if you stay away from trends, jump on board the sulfate-free train! This is used as a foaming agent in shampoos, shower gels, and facial washes but also in laundry detergent and dish soap – tough on stains, even tougher on your skin!  Sulfates can contain 1,4-dioxane, which is a known carcinogen, can disrupt the nervous system, and can irritate the skin and eyes.
  12. Triclosan – This is mainly used in deodorant as a preservative and anti-bacterial agent. It is suspected to be an endocrine disruptor and easily accumulates in your body to dangerous levels. Some research suggests it could be harmful to the immune system and may cause reproductive issues. As much as B.O. stinks, the pros of ditching this ingredient outweigh the cons. And don’t worry, we’ve got a healthier deodorant anyway.

At AILLEA, we provide high-performing cosmetics that are safe and toxin-free. With this, we encourage you to make the switch and ditch the ugly chemicals for products made with nature’s finest. We’ve scrutinized labels and searched all over the U.S. for top brands that use only natural, high-quality, and chemical-free ingredients to create non-toxic beauty products so you can shop easy and beautify naturally.

Enter to win a $25 gift card to Aillea! You can enter two ways: by commenting on this blog post about which beauty product you’re ready to ditch and why and by “liking” AILLEA’s Facebook page. The giveaway ends on Wednesday, November 18 at 10 a.m.ET – good luck!

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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.