Hear My Voice: Living the Life of Clichés (That Are True)

LBBC Blog - Scott Cotlar%27s PhotoScott Cotlar writes about living by common clichés for people affected by metastatic breast cancer.

When I was first diagnosed with metastatic male breast cancer, I was not prepared to make any major changes in my life. There were just a few small lesions in my lungs. I was fully functional, working full-time as an attorney and had no interest in changing my daily routine.

That was about 6 years ago. Fast forward to today – lesions in my lung are “too numerous to count” according to the radiologist’s report; 5 bouts of gamma knife radiation of the brain for a total of 13 lesions treated; radiation to most of my spine; and now large metastatic lesions in my liver. Even with all of this, my good quality of life did not change until…a lesion on my tibia (a bone between the knee and the ankle) gave me an “elevated risk for fracture,” requiring that I wear a leg brace and walk with a cane.

The lesion to my tibia was the game changer. All of a sudden, my quality of life was deeply affected: the simple act of walking was no longer quite so simple. I felt an urgent need to “get my affairs in order.” As I write this blog I am preparing for chemotherapy, which I have done my best to avoid for the past 6 years, taking advantage of any hormonal or targeted therapy that I could get my hands on. I am finally starting to feel like a “real cancer patient.” Continue reading

Hear My Voice: The Hope of Many Summers After a Metastatic Triple-Negative Diagnosis

Annie GoodmanUpdate 10/13/15: Annie Goodman passed away in December 2014. In this blog post she wrote for our 2014 Hear My Voice Blog Carnival, she discusses the realities of a metastatic triple-negative breast cancer diagnosis, and living her life with more hope and less fear. Discover the inspiration Annie provided to family, friends and others living with MBC in the post below.

Maybe it’s all in my head. I can’t have brain tumors. Maybe I’m just depressed and need psychiatric help.

After discovering a lump, I was diagnosed with stage IIB triple-negative breast cancer on February 29, 2012. I was 30 years old with no family history of cancer. I had a mastectomy, reconstruction, four rounds of Adriamycin and Cytoxan and 12 rounds of Abraxane chemotherapy. While in treatment, I found out I had the BRCA1 mutation. On November 30, 2012, I finished radiation and my doctor declared I was in remission.

I went back to normal life. I enjoyed having a healthy appetite again. My hair grew back. I went back to work full-time. Having cancer was no longer all I could think about. It started to become a memory, and I loved life as a survivor.

Due to the BRCA1 mutation, I had to go for ultrasounds of my ovaries every six months. My first screening was perfect. In November 2013, I went for my second ultrasound, and as soon as I got into work, my doctor’s office called: I needed to come in immediately. My right ovary was 11 cm. A normal ovary is 3 cm.  Continue reading

Hear My Voice: Facing the Emotional Roller Coaster of Metastatic Breast Cancer

MBC PyschoSocial Expert Julie Larson LCSWA diagnosis of stage IV breast cancer can lead to a roller coaster of emotions, which is normal. Julie Larson, LCSW, developed this list of tips and ideas to help smooth the ride. 

The weight in the room is palpable, thick with uncertainty and fear. Later I hear undeniable hope and the unmistakable clear tone of renewed perspective. Tears swell close to the surface during intimate conversations and the roar of laughter is a quick partner to humility and grace. This is the roller coaster of emotions that inevitably accompanies a cancer diagnosis, including metastatic breast cancer. Fear, worry and uncertainty woven together with hope, renewed perspective and gratitude. Experiencing the extreme shifts is often startling and unfamiliar to many affected by metastatic disease. Yet, most of those living with metastatic breast cancer (and their loved ones) have been affected by the ride.

Often it is helpful to know these emotional ups and downs are normal. You are not alone. After all, a metastatic breast cancer diagnosis is a life-changing experience. Treatment alone often demands changes in your daily routine, shifts in professional goals and physical losses which can be challenging to reconcile. “Why me” questions and the uncertainty about the future can be overwhelming.

Finding your way through the day to day is an exercise in self-awareness, acceptance, and frustration tolerance. And yet, those with metastatic disease all over the world are not only surviving but thriving as they live with cancer. The tips and ideas below may help smooth the ride a bit for you. Continue reading

Hear My Voice: Moving Past Diagnosis and Scans, Finding Joy in Life

MJSWe’re kicking off our new blog series, Hear My Voice, with Mary Jennings-Smith. Mary reflects on her metastatic breast cancer journey, going from newly diagnosed to doing what she enjoys.

As I sat waiting for news of my CT scan in the patient room of my oncologists’ office, my heart was beating so fast that I could hardly breathe. Just when I thought I couldn’t endure another moment, my doctor walks in carrying a bunch of papers. I knew by the look on his face that it wasn’t good news. My mind went blank. I did hear the words “metastatic,” “bone and lymph node” but I was barely absorbing the information. Fortunately, my husband was there and he filled in some of the blanks later that day. I always have someone come with me whenever I meet with my oncologist as the stress of dealing with metastatic cancer can make it difficult to retain what is discussed. This person always took notes while I struggled to retain the verbal information.

My oncologist explained that I would need to start chemotherapy right away as the anti-hormonal medicines were not working. Before I met with him again, I had a chance to read the pathology reports of my CT scans and the tumor marker test. I brought a drawing of a skeleton to our next meeting and asked him to point out exactly where the cancer had come back. He was glad I had brought the drawing, as to read the films of my skeleton were difficult for me usually because of tears in my eyes. I was unclear if the tumors were on the outside of the bones or on the inside. He explained that they were on the inside. Continue reading

Blog For Mental Health 2014: The Emotional Impact of Breast Cancer

mentalhealthblogdayToday is Mental Health Blog Day 2014, a Mental Health Month initiative from the American Psychological Association. As a contribution to this day, we wanted to acknowledge the emotional impact of breast cancer, in addition to sharing resources and letting you know that you are not alone.  

Whether you just heard the words “you have breast cancer,” are years beyond treatment or living with metastatic disease, it is likely that you experienced or continue to experience a range of complex emotions due to this major life change. At LBBC, we are dedicated to helping you cope with or manage these feelings by connecting you with trusted breast cancer information and a community of support.

In recognition of Mental Health Month and Mental Health Blog Day 2014, we wanted to highlight programs, resources and inspiring personal stories by men and women affected by breast cancer.

First and foremost, we have a toll-free Breast Cancer Helpline (888-753-52220) answered live from 9 a.m. to 9 p.m. ET. Staffed by volunteers who have been diagnosed with breast cancer, our Helpline will connect you with someone who cares and knows what you’re feeling. Call today or when you’re ready!

We also have some upcoming programs as well as podcasts and presentations of previous events, many of which you may find helpful: Continue reading

Blog Back: Healing and Embracing Change After Breast Cancer

LynnFolkmanLynn Folkman, manager of our volunteer programs, wrote her Blog Back post  about her personal growth after reaching her 5-year “cancerversary.”  Read her story and check out our past Blog Back columns.

“Feels like some kind of wild ride but it’s turning out just to be life going absolutely perfectly.”

Every morning, while having my espresso, I view a piece of artwork with the above statement and allow it to resonate in me.

In March 2009, I was diagnosed with stage I ER, PR and HER2-positive breast cancer. I have always been a believer that things happen for a reason. Although certainly at the time, I could think of no good reason why breast cancer and chemotherapy would be on that list. As 2014 began, I was rapidly approaching my 5-year mark and found myself filled with a variety of emotions: joy, sadness, anxiety and fear. Continue reading

Introducing My+Story

Kevin Gianotto is the associate director of marketing, public relations and corporate partnerships at Living Beyond Breast Cancer.  He’s worked for nonprofit organizations since 2002.

Two weeks ago, I attended a reception at the Dover International Speedway where I had the chance to introduce a number of individuals I met to the work we do at LBBC to connect people to trusted breast cancer information and a community of support.  The conversations I had that evening inevitably led to the opportunity for me to discuss what I am most passionate about here at LBBC –women who have been diagnosed with metastatic breast cancer, many of whom have become close friends, and the educational resources and support services LBBC has available for them.

52792_10151113120997285_1062790530_oMetastatic breast cancer—a form of advanced breast cancer also referred to as stage IV breast cancer—occurs when breast cancer has spread to other parts of the body.  Approximately 159,000 women in the United States are currently living with metastatic breast cancer, and this number is projected to increase to approximately 164,000 by the year 2015.

To raise awareness of Metastatic Breast Cancer Awareness Day on October 13, LBBC has partnered with the MedImmune Specialty Care Division of AstraZeneca to promote the launch of My+Story, an online resource center which highlights the needs of women living with metastatic breast cancer and calls attention to metastatic disease as a key component of October’s National Breast Cancer Awareness Month. Metastatic Breast Cancer Awareness Day was officially recognized by the U.S. Congress in 2009, following a grassroots awareness effort led by members of the Metastatic Breast Cancer Network (MBCN).

The My+Story site houses tools and information tailored for women living with advanced disease. The website is designed to connect patients with the information they need, and links to patient support groups that have specific programs for metastatic breast cancer patients—like LBBC and MBCN.

Visitors can learn about metastatic breast cancer and treatment options, find tips on how to take care of their bodies, and celebrate their life experiences by creating a hard copy photobook of personal stories that may be shared with loved ones. Women with metastatic breast cancer and those who are directly inspired by them can also create a personalized flower badge that can be shared at MyMBCStory.com and with their personal social media community to help raise awareness. In addition, supporters of women with metastatic breast cancer can visit MyMBCStory.com/awareness to download free educational materials and inspire members of their community to help raise awareness of the disease.

Other great interactive features (ones my social media team here at LBBC love) allow visitors to share their favorite images and information from the site with others via Facebook, Twitter and Pinterest. And, throughout the month, AstraZeneca will make a contribution to LBBC and MBCN each time visitors share content (up to a total of $28,000) in acknowledgment of the 28 years since National Breast Cancer Awareness Month was established and of the ongoing effort to bring metastatic breast cancer to the forefront. If you’re inclined, be sure to check out the site and let us know what you think.

Our New Vision and Mission

2012JeanSachsHeadshotVer2Web

This morning, Living Beyond Breast Cancer’s CEO Jean Sachs released the following message to our friends and supporters:

Dear Friends:

All of us at Living Beyond Breast Cancer are excited to share our new vision and mission statements with you:

Our new vision

A world where no one impacted by breast cancer feels uninformed or alone.

Our new mission

To connect people with trusted breast cancer information and a community of support.

These new statements were developed with the help of over 1,200 of you who responded to a survey we sent out earlier this year. Your input was used in a day-long retreat with members of the board of directors and staff. We learned what LBBC services are valued most and why so many have come to depend on our educational programs and services that allow for connection to others diagnosed with breast cancer.

For me, these new statements say with clarity what we strive to do every day and what we hope to achieve over time. Yesterday, I spoke with a long-time friend who had just been diagnosed with breast cancer.  She was overwhelmed, scared and shocked. Our conversation and the resources I was able to put in her hands grounded her and provided her with enough comfort and confidence to take the next step.

This is what LBBC does every day, and it is exactly what the new vision and mission statements express.

I hope you share my enthusiasm and, as always, if you have comments I would love to hear from you.

Warmly,

Jean 

Jean A. Sachs, MSS, MLSP

Chief Executive Officer

LBBC

Surprise

crashRonda Walker Weaver continues her series for the LBBC blog by discussing the three major challenges she faced after being diagnosed with cancer: Rise, Surprise and Adventure. Here she discusses the surprises she faced including a more recent, non-cancer related surprise (photo)…

My life has been filled with surprises – those gifts that show up on my back porch, uninvited, asking to stay. I usually have to choices with surprises – accept in awe and learn, or reject with a whine, “That’s not what I wanted!”

Learning I had cancer came as a huge uninvited surprise. I was in shock for months and in some ways I am still shaking my head in disbelief. Nothing I’ve ever felt – surgeries, pregnancies, or illness could have prepared me for the assault on my body – from cancer. That’s where the surprise came – nothing, nothing prepared me for my treatments and the side-effects. But I quickly stopped my whining and began to see it as a gift filled with surprises – the beautiful surprises that were, still are, a part of my journey. The Surprise is in the Goodness that holds my hand along this journey. The goodness in knowing, and in not knowing –

Knowing I didn’t cause this, and I acted quickly – I am healthy, and my healthy choices made this process more simple than otherwise – no “wish I would have” for me.

Knowing I have insurance. As the bills are still rolling in, we hit our individual out-of-pocket max in one week, I am blessed with healthcare. I give to the roadside panhandlers, and I’ve joked that one day perhaps I’ll stand on the side of the road with a sign that says, “Need boob job,” to see how much money I can make. But medical care is a necessity of life, and I count my blessings.

Knowing I can trust those who are providing my medical care. This has been such a comfort – they have a proven track record, are the kindest folks, they are proactive, and they are happy to work with me and my requests. As well, I have friends who are circling around me to hold me up when I’m falling, to lay beside me when I am alone.

Knowing I have emotional and physical support. I am so blessed to have family and friends and colleagues who care about me – I have so little to give right now, and they are giving so much (two types of soup in the fridge, a loaf of homemade bread, and warm apple cake, e-mails, cards, messages, music, a book).

Knowing Scott (my husband) is devoted to me. Oh he is a good man, he serves me gently, lovingly, patiently. I vacillate between tears of gratitude and tears of frustration and pain, and Scott holds me close. He is my rock. Even with the death of his father during all of this, he stands strong.

Knowing there is a plan – there has to be a gold lining in all of this – and I am hyper-aware that I need to be learning and growing from my experiences, so they are not in vain. While I have counted down my treatment calendar, I have not wished this time away. Writing, as a way to sort things out has been great therapy for me. This really is an “age of miracles and wonder.”

Goodness also comes in the not knowing as well:

Not knowing who or where I’ll be nine months from now, or even tomorrow – that’s part of the adventure and risk I’m willing to take on this journey. It’s part of the surprise – it is the excitement, even in the thick of things.

Not knowing what the plan is – I don’t believe “God must really love you to give you this,” or “God only gives you what you can handle.” Nope, not gonna buy this, there’s too much pain and hatred in this world, and knowing these statements, well, that’s discounting agency, choice, beauty, reality. This is not the God I believe in.

Not knowing has forced me to live in the moment, and this is something I must learn – I must learn it is good to not know.

 ***

A week post radiation my husband and I bought ourselves a post-treatment gift – hybrid bicycles – for road and trail riding. We put them in our pickup and headed to Southern Utah for a week of rest and relaxation and riding. I have fallen into materialistic love with my bike, and I have enjoyed the freedom it allows me, and the knowledge that this exercise is goodness for my mind and spirit. Until . . . two weeks ago I crashed on my bike. My bike flew one way; I flew the other, landing on my left side, elbow first. I am writing this post with one hand. I had emergency surgery to reassemble my elbow. I have stress fractures in my wrist, my hand, and my right foot. I also have some nice bruises! Crashing is the surprise, the goodness comes in the knowing that heck, I’ve had cancer; I’m not going to let a boot and a cast ruin my happiness. But I am going to rest! And no more surprises – right now I prefer “knowing.”

Ronda is 54 years old, she eats right, exercises daily, and there is no history of cancer in her family, yet she was diagnosed with breast cancer on Thursday, Sept. 6, 2012. She teaches folklore and writing at Utah Valley University and works for an online education company, LearningU. She loves reading, listening to music, gardening, walking and riding her bike, traveling, and spending time with her grandchildren, children, and her dear husband – who has been her pillar of strength through her journey. She also writes her own blog called Folklady’s Adventures. Be sure to check back soon for the 3rd installment of her story!

The staff at LBBC would like to wish Ronda a speedy recovery!

For more information about Living Beyond Breast Cancer please visit www.lbbc.org or like us on Facebook.

What, Me…Cancer??

On Tuesday we introduced first time contributor Sandi Dennis to the Living Beyond Breast Cancer Blog.  Sandi is a long time supporter of LBBC who grew up in Philly and attended Philadelphia High School for Girls (where she is looking forward to her 40th reunion in 2014!). She majored in journalism at Penn State and worked as a TV news reporter in Columbia, South Carolina, prior to attending University of South Carolina Law School. Today she practices FDA/healthcare law, and policy, including work for companies and nonprofits in oncology and patient advocacy.  She lives in Washington, DC, with her husband, daughter and a dog named Lulu. Here is part two of her story.

SandyDennis

On that day of the LBBC Yoga on the Steps Fundraiser in DC,  my sneaky triple negative breast cancer in fact was not gone, only as yet undetected.  And that 95% chance of non-recurrence? Well, somebody has to be in that 5%.  So much for my faith in statistics.   In early November 2012, a trip to the dentist and a routine x-ray showed something odd. “You don’t have a history of breast cancer, do you? I had a patient with breast cancer that metastasized to her jaw . .  .”  Well, my jaw dropped open, and then clenched through a roller coaster week of scans of my head, bones and brain (all normal), and a full body pet scan that showed metastases of my breast cancer to four sites—all soft tissue/lymph nodes.  In the world of Stage IV disease, I am very very early . .   . my cancer is virtually in its infancy. And I have every intention of keeping it there.  I am stunting your growth, you little b . .  .d!!

Wrong assumption # 5: stage IV is a death sentence.  I did not know that stage IV could be livable.  I truly thought that—except in rare instances—stage IV patients were down for the count.  I now understand that with current treatment I am likely to live for 20ish years (at which point I’ll be 75, which sounds way far away to me), and with treatment advances that are likely to emerge in the next decade, I’ll likely live longer than that–maybe even to my original target age of 90. (For some reason at age 45, I decided that 90 was a good ending point.)

I have just completed five rounds of chemotherapy, and am nearing the end of treatment.  The chemo was actually less fatiguing and I experienced fewer side effects this time.   I kept my hair, which shallow but true, makes me feel good about myself.  And I really, really don’t look sick at all, unless one notices my port.  I do suddenly have lymphedema in my right arm, a side effect of having fewer/less functional lymph nodes—even though those lymph nodes were removed surgically almost three years ago.  It’s always something.  But most importantly, the chemo is working! After three rounds, a scan showed that all four cancer sites had decreased in size by about 50%.  These numbers I can handle.  Hallelujah!  Thank you higher powers, and thank you drug developers, doctors, nurses, and everyone else that played a role in this.  Cancer, you’re going down.

Granted, I don’t always feel or act so tough.  Having a lifelong chronic disease is a life change that I haven’t quite wrapped my arms around yet. How exactly does one move on with life, and yet live from scan to scan? I feel like my cancer is a stalker that we may have driven away for awhile, but that is lingering nearby and can move back in at anytime.  My lifelong goal will be to keep him away from the good body parts.

In the meantime, I will continue to do the work I feel passionate about; work out, practice yoga, learn to meditate; be a loving mother, wife, sister, aunt, and friend; get pedicures, and buy rockin’ shoes.  Albeit, I will do all of these things as a cancer patient.  It’s not what I wanted or planned on, but it’s what I’ve got. And we don’t always get to choose.

You can continue to follow Sandi’s story by visiting her own blog, Cancer Diva 4 Ever and be sure to visit the LBBC blog for future posts by Sandi!

As we mentioned on Tuesday, LBBC will host its Annual Conference for Women Living with Metastatic Breast Cancer  Saturday, April 13 and Sunday, April 14 at the Loews Philadelphia Hotel.  The conference is designed to address the complex medical, social and emotional challenges that women diagnosed with metastatic disease, their families and their caregivers experience. To learn more about the conference visit lbbc.org.  In addition, on April 17, LBBC and the Triple Negative Breast Cancer Foundation will conduct a free webinar at 12:00 p.m. EST.  Also accessible by phone, the webinar’s featured guest is Dr. George W. Sledge Jr. Chief, Division of Oncology, Professor of Medicine, Stanford University School of Medicine.  During the call, you’ll hear about today’s standard of care in treating breast cancer that tests negative for the estrogen, progesterone and HER2 neu receptors and gain insight on making the treatment decisions that are right for you.  In addition, how to access clinical trials and get an insider’s look at the latest research on the horizon will also be discussed. Register online or call (610) 645-4567.