We Deserve to Be Heard: Making an Impact for Metastatic Breast Cancer

Jean Burns reflects on her experience in our 2015 Hear My Voice: Metastatic Breast Cancer Outreach Volunteer Program. Raise your voice and break the silence – apply to the 2016 program today.

A diagnosis of metastatic, or stage IV, breast cancer (MBC) in December 2013 left me reeling.  I was stage IV right out of the gate – de novo. I hadn’t seen that coming and I felt I had lost all control over my life. I would be in treatments for as long as I lived (median survival after an MBC diagnosis is 3 years – a statistic that has not significantly improved in more than 20 years.)

As most do, I turned to the Internet and researched everything I could find about MBC and what to expect. Once I had educated myself, I still felt this overwhelming sense of impotence.  I joined Facebook groups and reached out to MBC organizations to figure out how to cope. These provided me with both a sense of community and reminded me that I was not alone in this.  So many were in my same boat and had such great experiences and information to share.  I spent many hours on the Living Beyond Breast Cancer (LBBC) site, as it had so many resources that were useful and informative.

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Jean Burns (right) with fellow Hear My Voice Volunteer Maura Bivens. 

I also signed up to go to LBBC’s Annual Conference for Women Living With Metastatic Breast Cancer held in Philadelphia in April 2015, because it sounded like a promising way to network with MBC healthcare professionals, patients, and advocates. I applied for the Hear My Voice: Metastatic Breast Cancer Outreach Program because I felt like this would be a chance for me to turn the feeling of impotence into something powerful and make an impact. The HMV program was new in 2015 and it promised the opportunity to get involved with promoting greater awareness around MBC, impact research funding for MBC, and generally put the reins back in my hands, so I felt I was doing something productive about my disease.

I participated in the day-long training for the HMV advocates the Friday before the conference.  It really provided a good foundation for what we wanted to do as a group. There were great brainstorming sessions and I soon realized that this group of advocates was a powerhouse that would have an important impact.

We learned how to leverage our current skills (are you a good communicator, a whiz at Twitter, can you review research grants, etc.?) to advocate for MBC patients. Everyone had a niche and everyone fit into a role of some type. Each role was equally important, too.  The exchange of ideas and information was breathtaking and gave me new energy and a sense of hope and inspiration.  Some people attended a “die-in” at the end of the conference to physically represent the 113 people that die of MBC each day in the U.S.  It was a powerful and poignant message.

I got to work right away after the conference and training. For me, I knew I wanted to blog about having cancer and how it impacted my life.  I started my blog, mylittlepinkmonkey.wordpress.com, as a way to communicate with people about the impact of MBC on me and my family.

I also was interviewed on the iHeartRadio show with Melanie Young – Fearless Fabulous You to discuss the impact of an MBC diagnosis and did a local television interview as well for our ABC affiliate, KMGH-TV Channel 7 in Denver, Colorado.  The interview I did for Channel 7 can be seen here . I participated in each interview with the hope of explaining MBC and focusing on the need for more research funding for stage IV breast cancer. Friends held a fundraiser among friends and family and we were able to raise approximately $15,000 for METAvivor to use toward MBC research grants – all 100% of the funds. I wrote to my state senators and representatives asking them to support better funding and the National Institutes of Health bill to inject much-needed monies toward researching disease.

The 2015 HMV group continued to meet via telephone conferences throughout the year, and it was amazing to hear what the different members were doing. Starting yoga programs, contacting various breast cancer organizations to discuss MBC and request better focus on MBC patients, coordinating another die-in in Washington, D.C. on October 13th (MBC Awareness Day), sitting on Department of Defense committees about research funding, and so much more.

My takeaway after being an HMV volunteer – there is no reason to let an MBC diagnosis steal your sense of empowerment.  If you are looking for a way to take back some control and contribute toward making MBC a chronic condition and one that will hopefully be cured in the future, sign up to be an HMV volunteer.  Your participation will only continue to help bring awareness to MBC and if we all work together to have a voice, that voice will be heard by the larger breast cancer community. We deserve to be heard – but we have to take the laboring oar ourselves. This is our lives at stake, and being an HMV volunteer is one way to stand up and let the world know how important your life is.


 

Jean is a 49-year-old wife and mother of 2 boys (14 and 10) who works in the legal department of a large healthcare IT company handling their intellectual property matters. A Colorado native who loves hiking and enjoys the serenity of nature. Jean enjoys watching her boys play sports and her husband coach!

 

Let’s Talk Breast Reconstruction With Susan Ryan: Reconstruction Crash Course and Speaking With Providers

Susan Ryan talks about navigating breast reconstruction options and the factors she considered when making decisions. Join us Wednesday, February 17 to listen to Susan and a panel of others who have considered reconstructive surgery discuss their experiences in our free webinar, Let’s Talk: Making Breast Reconstruction Decisions.

 

“It is crucial to find doctors who will listen to your thoughts, needs and feelings. Why? Because a cancer diagnosis pulls the rug out from underneath our feet. We need to exercise some control over some decisions.”

The quote comes from Susan Ryan’s e-book, Cancer Is Not My Boss – Today or Tomorrow, a pre- and post-mastectomy resource for people diagnosed with breast cancer who have also experienced child abuse. Susan wrote those words not only as a clinical psychologist, but also as a woman who understands those feelings.

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After her own diagnosis in 2012, Susan ensured she asked the right questions and felt comfortable with her doctors as she navigated diagnosis and treatment. This was especially important to her when it came to making decisions about breast reconstruction.

In the first blog post of the Let’s Talk Breast Reconstruction Series, Susan tells Living Beyond Breast Cancer’s Digital Media Specialist, Josh Fernandez, about her crash course in breast reconstruction, including talking with providers, understanding her options and empowering others.

Josh: Why did you decide to get immediate breast reconstruction?

Susan: My plastic surgeon Dr. Matthew Becker was available to operate on me after my breasts were removed.

I thought I could return back to my life more quickly because there would be less surgeries vs other reconstructive surgeries. I had a great sex life before cancer and wanted it to continue after breast reconstruction. Cancer would take away my breasts, but it was not going to ruin my marriage or my sex life.

I thought I would look more natural which would be less upsetting to those around me including me.

Josh: You got tissue expanders with silicone implants. How did you decide on that option?

Susan: I consulted with Jane Brannon of Komen of Knoxville and she was extremely helpful. She gave me a crash course on breast reconstruction. She told me that the Dr. Matthew Becker is known as the “magician in the community.”

She told me that there were other options out there, but since I like to work out it might change the way my body works, i.e. abs would not be as strong, or if they took the dorsal muscle, swimming might weaken on one side. Since I like to swim, bike and run, implants seemed like a good fit for my lifestyle. Implants offered fewer surgeries than the other methods, which was a big plus. I also found out that they do not leak.

Josh: How did you feel about communicating your concerns about reconstruction with your provider(s)?

Susan: Communication with Dr. Becker was awesome. He listened. He was not rude. He answered my long list of questions at each visit. He gave me eye contact and smiled at me.

He only wanted to create the breasts that I wanted. He was never critical of my body nor did he ever try to sell me on more procedures or products. I told him I wanted as close to what I had before and that is what he gave me.

He was responsive when I had issues. He saw me right before he had to catch a flight to California when I had called that morning about by chest being red. He put me on antibiotics right away. He called me later to tell me to go to the hospital when he thought my labs looked off and he was right. He called throughout the weekend to check on me. I had a leaky expander in Sept of 2012 (he replaced it in 3 days, a staph infection in November of 2012 and capsular contracture. A compassionate doctor makes a huge difference.

Josh: In addition to your practice, writing and volunteering at events, you’re also an LBBC Breast Cancer Helpline Volunteer. What’s the biggest piece of advice you give to callers concerned about making breast reconstruction decisions?

Susan: Being comfortable with your doc is so important. Research shows that usually a patient’s immune system gets stronger with a good bond between doctor and patient, we recover faster when we go through an illness and/or complications. I encourage women to be open with their doctors. If there are any issues that are bothering them, it’s a great idea to put them on the table. It’s very important that when she is done with surgeries she has the size breasts that she wanted and not just what her surgeon thinks looks good.

Josh: What other important point would you like our readers to know about making decisions around reconstruction?

Susan: The choices belong to you. Breast reconstruction can be a time for transformation. It can be a time to go smaller or bigger or stay the same size. There are many choices out there. It can be the chance to never have saggy breasts again. In spite of the fact that I thought I looked a bit like Frankenstein post-mastectomy, it changed dramatically within six months. I went from not caring who saw my chest to wanting privacy because my chest began to look like I had breasts again. I tell newly diagnosed women that my breasts are beautiful. That when a doctor has to examine me, he or she always tells me how great they look. More importantly, I feel good when I look in the mirror. I see a woman who survived not only child abuse but breast cancer.


 

Susan Ryan is a clinical psychologist who helps people work through trauma. She was diagnosed with breast cancer in 2012. Cancer taught her very quickly that her self-care needed improvement. At the time of her diagnosis, there seemed to be very little written about specific techniques for people with cancer to psychologically cope, especially if they’ve had a history of child abuse. This motivated her to write an e-book on Amazon, Cancer Does Not Own Me – Today or Tomorrow, as a resource for those working through trauma in addition to a cancer diagnosis. When she’s not working or competing in 5K races, Susan volunteers in her community for mental health events and for LBBC’s Breast Cancer Helpline.

Get helpful insight on breast reconstruction during our free February webinar. Register now for Let’s Talk: Making Breast Reconstruction Decisions.

Get […..] With Us: Celebrating 25 Years of Living Beyond Breast Cancer

Today, we hear from Living Beyond Breast Cancer CEO Jean Sachs, with a special invitation to our supporters. Her blog post officially kicks off LBBC’s 25th Anniversary of providing those in need with trusted information and a community of support. This blog is the first in what will unfold as a series of entries that tell the LBBC story – from those who have been with us since our beginning in the early ‘90s to those who have just recently found us.

jean_sachs_web.jpgThroughout 2016, Living Beyond Breast Cancer will recognize a number of important milestones. In April, we’ll host Thriving Together, our tenth annual conference for women living with metastatic breast cancer. Our grassroots fundraising event Reach & Raise®, where supporters join together for a large scale yoga practice on the steps of the Philadelphia Museum of Art, turns 15.

And most notably in 2016 we will acknowledge LBBC’s 25 years of service to women impacted by breast cancer with a special campaign – and I’m extending an invitation to you to be part of it.

Get […..] with us!

Get […..] with us! is designed to introduce those who may be unaware of LBBC to our programs and services using the voices of people like you who are connected to the organization. If you want to be a part of this interactive and fun campaign read on.

What goes through your mind when you think about LBBC? What is it about LBBC that’s special to you? Maybe you feel a sense of kinship, comfort or empowerment. Maybe you feel you have a better understanding of breast cancer because of our work. Whatever the reason, we believe something powerful connected you to us. What was it and what’s one word that describes it?

Once you’ve found the right word, download a PDF of our Get […..] with us! campaign card.  Print it out and then take the word you just thought of and write it in the […..] spot.  (NOTE: You may need to adjust the word somewhat for correct grammar and context). So, if you feel LBBC is a great source of information, your card might say “Get informed with us!”. Or, if LBBC provides you with help from your peers, your card might describe that experience as “Get support with us!”.  We don’t want to put words in your mouth so be creative.

Then, all you have to do is have someone snap a high-resolution photo of you holding the sign and email it, with a short description of your LBBC experience to Kevin Gianotto at kevin@lbbc.org.

We’ll be using the photos and stories of those who’d like to participate in local, regional and national promotion of LBBC throughout 2016. Submission deadline is Friday, January 29. If you would like to participate, you’ll also need to return a signed copy of LBBC’s image release form, which can be downloaded here. If you have any questions, don’t hesitate to reach out to Kevin.

There’s no better time for you to “Get together with us!” than right now because we have so much to give to anyone impacted by breast cancer – and you can help us spread the word!


Be sure to bookmark this post and follow us on Facebook and Twitter for updates on new blog posts in this special 25th Anniversary series.  In the coming weeks, we’ll be featuring stories on the formation of and inspiration behind our Breast Cancer Helpline, the evolution of our signature fundraising event, Reach & Raise, and how LBBC’s groundbreaking work on metastatic disease has helped change the way we address the needs of those with this type of diagnosis.

My Humpty Dumpty Life: A Balance Between Love and Pain

For #MetsMonday, Hear My Voice Outreach Volunteer Ishiuan Hargrove shares an entry from her CaringBridge blog about a near death experience in late November. Her entry focuses on the tug of war between the pain she experiences from brain metastases, and wanting to do and see more with her loved ones (and all of you).

Journal#70 – I have a near-death experience

Dear Family and Friends,

I had a taste of what a near-death experience is like.  It felt very strange.  About twelve days ago, I woke up feeling like I was standing on top of a merry-go-round, not knowing what happened to my head, and had continuous vomiting.  I knew there was something wrong in my head since I had my third stereotactic radio-brain surgery at NYU in late October.  I’ve had metastatic brain tumors originating from my breast cancer since December last year.  Severe headaches have been part of my life for a year. I have exhausted all the available drugs as part of continuing care so I know very well that I am living on “borrowed time.”  This is the year where I have had four brain surgeries.11987183_10153571237599076_8631362120986273324_n

Sometimes when I am alone, I wonder if I would know when my moment comes and I also wonder, what will it feel like?  I ran through all kinds of scenarios in my head. I expect that I will know when that moment comes.

As it turns out, my multiple brain metastases had slowly gone through my brain, and there were lots of blood vessels, some quickly, some slowly, leaking blood into my brain.  I guess most people like me would slowly lose consciousness, rely heavily on good pain meds and slowly slip into a coma and die in a hospice settings.

My husband drove an hour to take me to Tampa General Hospital’s ER, to one of the best teams of neurosurgeons in Florida. Upon reviewing my scans, I was immediately admitted to the Neuro-ICU right away.  I really felt death close in on me; I didn’t want to continue to breathe. The pain was so great that it would be so much easier if I just stopped breathing.  I expected my “moment” and I really felt the weight of my cancer journey over these past nine years. All the surgeries piled up on top of each other.  It was as though this is my chance to take the exit. No more physical pain, I could rest and close my eyes forever. As we dropped our ten and twelve year-old boys to our friends and quickly said “good-bye”, suddenly, it hit me that I didn’t say my good-byes properly.  I thought I used up all this body could offer. Did I have any juice left?  Was I at the end of my life?  Wait, was I ready?  I might die peacefully in the arms of my beloved husband and this is more than many people could asked for.

The chief neurosurgeon Dr. Harry Van Loveren came by to see me the next day. He told me the hospital’s neuro-tumor board was debating on whether to operate on me. However, he told me he would operate for me.  He didn’t want to send me home to hospice, but he could not fix me permanently.  He asked me, what would I like to do?

I have been preparing to live a shorter life for the past couple years.  Suddenly I felt greedy. I used to pray to live to see my fortieth birthday, and I’ve already had two bonus years; but this is not enough!  I have a roundtrip ticket to Taiwan to see my mom in January 2016.  This year, she was also diagnosed with breast cancer at age of 62 and I have not seen her yet since her treatment started.  I want to use that ticket!

At that moment in the ER, I began to feel like Humpty Dumpty.  Perhaps I could be duct-taped temporarily, however long it could hold me together, before I finally hit the ground.  Who knows. I begged Dr. Van Loveren to take a chance on me, to just let me do some traveling and told him that I know I will eventually expire on the road, but that’s way better than slipping away peacefully in a home-hospice environment.  He said he saw a small candle left in me.

The pain I felt after the surgery was so great everywhere and I remembered asking myself again, why not take an easy exit now? It would be so much easier NOT to open my eyes.  Then I realized that I have worked so hard for the past 41 years to have this life, to establish my relationship with this world.  What a waste if I just quit now!  My heartache would be so much greater if those who I love would have to wake up every day knowing I am gone. They would have to deal with their emotions for many years, but I just need to endure this extra physical pain for a couple of weeks. I saw the look in my husband’s eyes; it was the kind of compassion a human has looking at an injured animal and wanting them to stop suffering. I was very pissed off! I do not want him to want my suffering to stop. I want him to want me to stick around to ask him to help me, to continue to interact with me, to raise our sons together, to experience life with me no matter how much pain there might be for both of us.  I want him to ask me to suffer for his sake and I want him to be as angry as hell as I am, not filled with grief to my end.  I don’t know if after I die I will be in a “better place?”  I have always believed we, with our fellow kindred-spirits, could create heaven here on this earth.  There is no other “better place” I would rather be.  I love this world I live in and I love all my friends and family.  I want to be part of the heaven that we create together.  So far I have only put 41 years of life into it, but I am greedy and I want to do more…..

So with the great pain of an aching heart, I decided to open my eyes and feel every single pain in my body, but I feel alive!  The pain reminds me this is my choice.  I know it was not my time, because I choose to burn my candle more, to aggravate more people, to voice my opinions more, to continue to build a heaven here on earth.  I felt very strong and positive energy coming toward me from all over the universe, from all different sources and I have felt so much LOVE from so many sources that were unfamiliar to me.  I think the LOVE and CARE from all other human being (many I do not even know) brought me back to life.  You made me want to continue to exist.  This was the most painful and most beautiful sensation I have ever experienced.  As I am now trying to pull words from my extremely muggy head,  I need to send this out to all of you who send me this energy. Human beings have this enormous potential to keep each other alive – believe it!  We are all in this world together. We can carry each other; we can be each other’s miracles.

I am going to live my Humpty Dumpty life for now, as long as it serves some purpose.  I know very well my cancer is a time bomb, my brain tissues are paper-thin, and from any slight touch my brain could hemorrhage to death.  My new life from this point needs to be a balance between LOVE and physical pain.

I thought my cancer had taken almost everything from me, but all of you who are reading my journals have put your support, love, heart and hope back into this broken body.  I thank each one of you for being part of my life. Let us continue to build heaven here on earth together!

Love and Merry Christmas,

Ishiuan


Ishiuan Hargrove, 42, is a medical physicist and CEO of her own consulting company, Hargrove Consulting Physics. Ishiuan developed a passion for cancer advocacy and research after her initial breast cancer diagnosis 12 years ago. She was diagnosed with metastatic breast cancer in 2013. Ishiuan lives in Florida with her husband and children. 

Facing a Breast Cancer Few Know About: Patrice Starks

Written By Robin Warshaw, Contributing Writer
Reviewed By Minetta C. Liu, MD

On the day she was diagnosed with inflammatory breast cancer, also known as IBC, Patrice Starks, of Royal Palm Beach, Florida, had never heard of the disease.

Like many people, she thought all breast cancer formed as a lump that could be felt by touch or seen on a mammogram. Having just turned 41 years old, Patrice had her first mammogram a few months before and was told all was fine. When her left breast began to hurt and swell, she thought she had an infection, like the one she experienced when breastfeeding her daughter.

Finding out the real source of her breast discomfort “was completely shocking,” Patrice says – especially the aggressive nature of the type she had.

“One of the things that troubled me most was the lack of knowledge on my part – and in the world – about IBC. Even most of the doctors I see don’t know much about it,” she says.

Patrice Starks

Taking Action

IBC often makes no lump. The cancer cells block lymph vessels, which makes the breast swollen and red.  Affected breasts may feel warm or heavy, look bruised, or have skin ridges or pits, like an orange. Only 5 percent or fewer of all breast cancers in the U.S. are diagnosed as IBC. It is staged as stage III or more.

Because symptoms resemble other medical conditions, such as skin rashes or mastitis, a common breast infection, diagnosis may be delayed. A timely diagnosis of IBC is important because breast-related changes and discomfort may develop quickly.

Patrice was diagnosed with stage III, estrogen receptor-negative, progesterone receptor-negative, HER2-positive disease. She received her diagnosis on a Monday, saw an oncologist on Tuesday, then spent the rest of the week being readied for chemotherapy, which started the following week.

“You don’t have time to figure out your life,” she says.

She was working 50 hours or more per week, having just been promoted to a deputy supervisor job for Florida’s juvenile justice programs. Scheduled to go on a business trip that week, she called her boss and cancelled the trip right after getting her diagnosis.

“I had to work on making sure I became healthy enough to remain a wife, remain a mother, remain a co-worker,” she says. “My job description went from working for the state of Florida to working for Patrice.”

She was especially concerned about how her diagnosis would affect her young children: a 20-month-old daughter and 3-year-old son, who has autism and doesn’t speak.

“He’s very perceptive in understanding emotions, so I told the two of them that Mommy’s sick and she has a boo-boo.” Her son responded by putting his hand on her breast. “I said, ‘Yes, Mommy has a boo-boo.’”

When her hair began to fall out from chemotherapy, her husband shaved her head. Their daughter sat in Patrice’s lap, fascinated by the dropping hair, as their son ran around, laughing. “It was fine,” she says. “They don’t understand cancer, and I’m glad.”

Coping With Fatigue

Patrice had chemotherapy, trastuzumab (Herceptin) and then a mastectomy and radiation. She has experienced a lot of fatigue since treatment began. She can be having a conversation, then wake up three hours later, having fallen asleep without knowing it.

She gets up with the children and prepares them for day care. Her husband drives them while Patrice grabs a nap. Her mother, who is retired, helps with the laundry, drives Patrice to appointments and errands, and assists when the kids are home. Patrice bathes her daughter and son because “I didn’t want to change their routine. I wanted to still be their mother.”

She hopes the end of radiation treatment will lessen her tiredness. Her healthcare team advised her to walk. “They said any bit of exercise will give you more energy.”

Before breast cancer, she exercised twice a week and could walk a mile in 15 or 20 minutes. Recently, for a fundraising relay, she walked 2 miles in 2.5 hours. When she woke up the next day, she stayed awake for only a short time, and then slept another 6 to 8 hours more.

“You don’t even realize how tired you are until it hits you,” she says. When she has energy in the evenings, she puts the children in their stroller and walks about a mile in the family’s neighborhood.

Spreading the Word

Patrice has been on a personal campaign to tell more people about IBC. When her doctor’s office asked if she would talk with a woman who had just been diagnosed, she agreed immediately. “I want as many people to know as much about this as possible,” she says.

As an African-American, she is also concerned about the lack of awareness about IBC she sees among African-Americans, who are more likely to be diagnosed with the disease at a younger age than white women. All women should follow appropriate screening guidelines.

“I tell all of my friends, you have to do your monthly checks of your breast. I realized there were some changes in my breast as it was growing and growing, but I didn’t take the time from work and go to the doctor like I should have,” Patrice says.

Now she has a message for others: “Be sure you go to the doctor if there’s an issue.”

PrintThis article was supported by the Grant or Cooperative Agreement Number 1 U58 DP005403, funded by the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.

Our Annual Yoga Event Has a New Name!

Have you heard the news? Living Beyond Breast Cancer’s annual yoga fundraiser has a new name!  What has grown into our largest event began in 2002 with less than 100 people practicing yoga in the rain on the steps of the iconic steps of the Philadelphia Museum of Art. I can still remember standing on the steps with event co-founder and yoga instructor Jennifer Schelter. We promised we’d be back every year on the third Sunday in May. We’ve kept that promise along with thousands of our participants. In fact, more than 2,300 people participated in the Philadelphia event in 2015. The event has also expanded into other cities including Washington, D.C., Kansas City, Denver and Fort Myers.

forjosh3This isn’t the first time the event was renamed. In the early years it was “Yoga Unites for Living Beyond Breast Cancer” and for a short time “Yoga 4 Living Beyond Breast Cancer;” three years ago it changed to “Yoga on the Steps.” We know that many will still think of the event as that but we wanted a name that reflects more of what makes the event so special and inspires people to participate year after year. So through interviews with past participants, staff and a national survey, we learned a lot. Here is some of what they told us:

The event is much more than an outdoor yoga class. It’s a morning of inspiration, connection and community that gives participants an opportunity to celebrate, reconnect, remember and honor in an intimate setting. Participants also told us that the yoga event is about support – supporting others while also receiving support – all while giving back to Living Beyond Breast Cancer through grassroots fundraising.

“I participated in Denver, Fall 2015 for the first time. It was a truly amazing experience to do yoga outside in such a supportive, connected community; the practitioners leading and assisting were gentle and strong, as was the vibe of the whole event. I’m planning to bring my daughter with me to Philadelphia next year.” – Amy R.

We absolutely agree with these sentiments, as we witness the same at each and every yoga event year after year. The event is special to us, we have nurtured it, and we’re thrilled that it’s just as special to you.

So without further ado, our new yoga fundraiser name is…

Print

Reach – we chose this name to represent reaching out to friends, family, colleagues, and neighbors to be part of the event, reaching the communities that we serve and reaching your goals – both on an individual and team level.

Raise – you raise up those who have been affected by breast cancer and need your support, you raise awareness about the effects of breast cancer and you raise critical dollars that help Living Beyond Breast Cancer create and implement programs and services to help those dealing with breast cancer.

We hope that you appreciate the time and thought that went into creating the new name. And don’t forget to mark your calendars! Living Beyond Breast Cancer’s Reach & Raise takes place in Philadelphia on Sunday, May 15, 2016!

Jean A. Sachs, MSS, MLSP
Chief Executive Officer

 

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.

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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.

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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.