Archive for the ‘managing emotions during treatment’ Category

Blog Back: Healing and Embracing Change After Breast Cancer

March 31, 2014

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. (more…)

Introducing My+Story

October 10, 2013

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

August 20, 2013

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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

June 28, 2013

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??

April 11, 2013

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.

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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.

LBBC’s Triple-Negative Breast Cancer Focus Groups Need Participants!

March 27, 2013

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Do you have triple-negative breast cancer, or know someone who does? LBBC is planning several focus groups to learn about the needs of women living with triple-negative breast cancer. Groups are planned in the areas of Chapel Hill, N.C., on April 10; Philadelphia, Pa., on April 12 and April 13, (focusing on metastatic breast cancer); and San Francisco, Calif., and Indianapolis, Ind., the last week of April (dates TBD). Groups last 90 minutes, and participants receive a $25 gift card for their time. If you are interested in participating in a focus group, please contact us ASAP at publications@lbbc.org and let us know which location interests you. We will be in touch with more information!

“Hit it hard and hit it fast.”

March 13, 2013

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Last week, we introduced you to LBBC’s newest blogger, Laura Renegar, who was diagnosed with triple-negative breast cancer in 2011.  When we left off, Laura had asked her surgeon if the results he had just delivered did indeed mean she had TNBC.  Trying to be as compassionate as possible he stated, “Yes darlin’, it does.”   

Always the southern gentlemen even as I was being told I have been diagnosed with triple-negative breast cancer.  Here I was, thrown back down to the lowest point of the roller coaster ride yet. By this point, I had done enough research to know that I should be frightened. The research that I had seen showed the statistics and the prognosis of TNBC are not as positive as some other types of breast cancer, that there is not any targeted therapy for TNBC and that is usually very aggressive. Now I understood why my surgeon wanted my tumor out a few weeks prior. I understood why he didn’t want to waste another week waiting for the insurance company to decide the fate of my diagnosis while debating coverage for a blood test.  All things became clear. I had to become my own advocate and I had to seek every bit of information I could find and I had to do my research.  I didn’t know anyone that had triple-negative breast cancer, in fact, I had barely heard of it.

I had a port placed in my chest a few days later and in a few weeks, I began chemotherapy. Three days before chemotherapy I met my first survivor friend who had TNBC. She was coming up on her five year mark and I was impressed. She looked good and she was healthy. I became focused on just getting through chemotherapy because my oncologist said we were going to “hit it hard and hit it fast”, and we did.

I put my BRCA test results out of my mind and I gave 100% attention to staying well through chemotherapy. A month after my last chemotherapy treatment was my 48th birthday and it was time for me to make my decision for further treatment. Because of the fact that my cancer was triple-negative and the fact that I have the BRCA2 gene mutation, my decisions seemed pretty clearly defined. My oncologist seemed to think so, my surgeon seemed to think so, but yet, I had to make the final decision, and live with that decision, whichever path I chose.

I didn’t have to have a bilateral mastectomy. I didn’t have to have my ovaries removed. But if I didn’t have those surgeries, would that encourage a recurrence?  I clearly remember lying in my bed on my birthday and thinking “in order to have more birthdays, I have to do everything in my power to protect myself”.  I remember weighing my options. Even though my cancer was not in my lymph nodes, and I had chemotherapy, the fact that I was BRCA2 positive remained. My chance of a recurrence was extremely high; and the prognosis of recurrent triple negative breast cancer is poor. I had to do everything I could to secure my future and my life. I began researching bilateral mastectomies and what it meant to have my ovaries removed and what it would be like to be put in medical menopause at 47 years old. This option did not seem to be an easy path, but it did seem like the safest treatment path, to secure a future for myself.

The bilateral surgery, along with the oophorectomy (Ed. Note: the surgical removal of an ovary), was a hard surgery for me.  It was hard physically and emotionally, and my roller coaster ride continued through reconstruction while learning to live with menopausal symptoms and my new body.

March 1, 2013 was the date of my two-year survivor anniversary. I look back now and am so proud of the path I took and the decisions I made to ensure my health. I did everything I could possibly do to beat my triple-negative breast cancer diagnosis and reduce the chances of a recurrence.

Would I do the same thing over again? Yes I would!

My story is still unfolding but I live each day the best way I can. I volunteer a lot for the American Cancer Society, I continue to update my blog, I write stories and articles when I am asked to, and I tell my story when I am invited to speak about it. Mainly, I try to encourage women to be their own advocate, to get their annual mammograms, to have their yearly physical, and to do self exams. I encourage them to know their breasts and to know their health history.

I will continue to try and shine a light on TNBC until a targeted therapy is found. I now know 19 women with triple-negative breast cancer. Two years ago I was not fortunate enough to know, and love, these women but I consider this one of the many blessings of this diagnosis. If you are diagnosed with TNBC, please reach out to people in your community and to find other TNBC survivors. How? Ask your doctors to introduce you to some of them.  See if there is a local support group for TNBC.  You can also call the Triple Negative Breast Cancer Foundation and contact the American Cancer Society and ask for a TNBC volunteer with Reach to Recovery.

I also encourage you to seek out the many services available at LBBC for women with TNBC including their Guide to Understanding Triple Negative Breast Cancer, expanded sections of content on their award winning website and their upcoming free webinar featuring Dr. Eric P. Winer.

Take advantage of these resources and find other women – because they may need to have you in their life just as you will want them to be in yours.

On April 17, LBBC and the Triple Negative Breast Cancer Foundation will host 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.

In addition, you can order a free copy of LBBC’s Guide to Understanding Triple-Negative Breast Cancer,  that offers helpful information, whether you have just been diagnosed or you are moving forward after treatment.

Be sure to check out Laura’s blog, too!

“Yes darlin’, – it does.”

March 6, 2013

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If we followed format, this is where we’d introduce you to LBBC’s newest blogger, Laura Renegar, with a few polite lines that could never  do justice to this amazingly talented and funny lady.  We’re still laughing over this offering of honesty:

When I had expanders in my chest they kind of formed a shelf below my collar bone. When I was sick and in bed and would eat propped up, I would CONSTANTLY have toast crumbs or Oreo crumbs on that “shelf” on my chest. Once I found a whole chocolate chip sitting there and once I found a piece of turkey. There are funny moments during expansion and reconstruction. 

Here is the first of a planned series of blogs where Laura will share her experiences as a woman diagnosed with triple-negative breast cancer.

On March 1, 2011, I received the call that every woman dreads. I was at work, sitting at my desk, holding my cell phone that showed the name of my OB/GYN calling. My mind debated about not answering the phone, but quickly considered the possibility that this phone call could be good news. When I answered that call, my life, and the life of my family and friends would be forever changed. “You have breast cancer” my doctor said, “I am sorry.” We talked for a few minutes as I sat numbly at my desk writing the name and number of the surgeon he suggested on a small piece of scrap paper.

A few days later my husband and I met my surgeon and his nurse. Right in the beginning of the appointment the doctor said “can I joke with you?” Are you kidding me? This was my kind of doctor! Not only did I want him to be able to joke with me, I needed him to be able to joke with me. No matter how serious breast cancer can be, I needed my medical team to be brutally honest, caring, and compassionate yet able to lighten some of the moments with a joke or some laughter.

My surgeon recommended genetic testing and I agreed to see a genetic counselor for my BRCA test. I had the blood test and genetic counseling and the waiting began. One week became two weeks. My insurance company was negotiating with the genetic testing company about my coverage for this $3,400 blood test. Two weeks! My surgeon scheduled my lumpectomy and sentinel node biopsy because he couldn’t allow my cancer to continue to grow and spread while waiting for the insurance company to make a decision. At this point I began to realize that my cancer was most likely aggressive. I was told that my cancer would be staged, and further diagnosed, when the tumor was removed during the lumpectomy. I felt lost and left somewhat in the dark. Every day seemed as if we were hurrying up for a test or an appointment and then we were waiting. I felt like we were always waiting for a call, an answer, or a test result. I felt immediate relief the night of the lumpectomy and sentinel node biopsy surgery, knowing that my cancer had been removed. I was very happy to have the surgery behind me, but little did I know that my real roller coaster ride was just beginning.

Two days after my surgery I got a phone call from the genetics counselor. Once again, a phone call that I was hoping was going to deliver good news – but I heard hard news instead. The phone call began with “I am sorry to tell you this, two days after your surgery, but your BRCA test came back positive yesterday.” What? The BRCA2 gene mutation put a whole different spin on my diagnosis. Now I felt as if I was at the bottom of the roller coaster loop and I began researching. My odds of getting breast cancer were obviously 100% (since I already had it) and the test showed my odds of getting ovarian cancer were over 50%. But what does this test say, and prove, about my chance of recurrence? I was recuperating from the surgery yet my mind and heart were nagged by this BRCA test result and worrying already about a recurrence. Five more days passed and we still had not gotten news on my pathology report from my lumpectomy. No news is good news right? Eight days after my lumpectomy, I was at work, and my phone rang; it was my surgeon’s nurse. No news was good news! My lymph nodes were negative for cancer and he was able to get clear margins. I am ecstatic, we are all celebrating and dancing around, and now I feel like I am on one of the upper tracks of my roller coaster ride.

Clear margins AND clean lymph nodes? How blessed am I? I am on the top of the world!

The next day I receive another phone call, this time it is with the result of my her2 neu test. I was still riding high on the lack of cancerous activity in my lymph nodes and the fact that he was able to get clear margins. My surgeon stated that my her2 neu test came back negative. I got very quiet and said to my surgeon, “this means I am triple negative, doesn’t it?”

He paused on the other end of the phone and said “Yes darlin’, – it does.”

On April 17, LBBC and the Triple Negative Breast Cancer Foundation will host 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.

In addition, you can order a free copy of LBBC’s Guide to Understanding Triple-Negative Breast Cancer,  that offers helpful information, whether you have just been diagnosed or you are moving forward after treatment.

Be sure to check out Laura’s blogtoo!

LBBC to host 7th annual conference for women living with metastatic breast cancer

February 13, 2013

 

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Living Beyond Breast Cancer (LBBC) has opened registration for its 7th annual conference for women living with metastatic breast cancer.  The event, Enhancing Your Health and Quality of Life, takes place Saturday, April 13 – Sunday April 14, 2013 at the Loews Philadelphia Hotel.

Breast cancer is considered metastatic when it spreads from the breast to another part of the body such as the lungs, bones, liver or brain.  There are approximately 152,000 women in the United States currently living with metastatic breast cancer and estimates indicate that advances in treatment and care will push that number to 164,000 by the year 2015.1

Previous conferences have attracted attendees from across the country by featuring leading national health care and wellness experts who present specialized plenary sessions and over a dozen workshops designed to address the complex medical, social and emotional situations many women experience when diagnosed with metastatic breast cancer. As in past years, workshops for family members and caregivers will also be offered.

Conference attendees will have the opportunity to ask questions about current research and clinical trials, treatment options and quality-of-life concerns. Additionally, attendees are given the chance to meet, connect and network with hundreds of women facing similar challenges expanding their peer support network. Travel grants and fee waivers, provided by Susan G. Komen for the Cure, are available for those who qualify.

LBBC’s highly specialized programming for women living with stage IV breast cancer stems from the nonprofit’s 2006 release of Silent Voices: Women with Advanced (Metastatic) Breast Cancer Share Their Needs and Preferences for Information, Support and Practical Resources. In this extensive report, LBBC consultants Musa Mayer, MS, MFA, and Susan E. Grober, PhD, reported their findings from a survey of 618 women living with stage IV disease. The survey focused in great detail on their use of and preferences for services in three domains: information, support and resources. The data revealed insights on the information, support and practical needs of women living with metastatic breast cancer so LBBC could address the gaps in tailored resources for this population.

To do this, LBBC created not only their annual conference but a variety of other resources.  Since the report’s release, a special subsection of lbbc.org just for women with metastatic disease has been significantly expanded, free webinars and regional community meetings feature topics of appeal specifically to the metastatic breast cancer community and the LBBC Guides to Understanding Breast Cancer: Metastatic Series includes specialty titles: Treatment Options for Today and Tomorrow, Managing Stress and Anxiety, Symptoms and Treatment Side Effects, Understanding Palliative Care and LBBC’s newest publication, Guide for the Newly Diagnosed.

Visit lbbc.org to register online and download an event brochure. To register by phone or for additional information, call (610) 645-4567.

The conference would not be possible without the support of the event’s presenting travel grant and fee waiver sponsor Susan G Komen for the Cure®. Other event supporters include Title Sponsor Genentech. 

1 Data on File. 1006812. AstraZeneca Pharmaceuticals LP. Wilmington, DE.

 

LBBC is currently seeking women living with metastatic breast cancer or their caregivers who would be interested in sharing their stories. Leading up the conference, we’ll feature these first-person accounts here on the LBBC blog and promote them via lbbc.org, Facebook and Twitter.  If you would like to tell others your story, or have any questions, please contact LBBC’s Kevin Gianotto via email at kevin@lbbc.org.

 

Alysa Cummings: Spirit of Spring

February 13, 2013

Alysa Cummings, Group Facilitator for LBBC’s writing workshop series Writing the Journey, shares a seasonal excerpt from her recently published cancer memoir, Greetings from CancerLand,  in February’s first submission to Living Beyond Breast Cancer‘s Writer’s Corner.

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Spirit of Spring

Excerpt from Greetings from CancerLand: Writing the Journey to Recovery

Six brown paper bags, stuffed almost to bursting, sit at the bottom of my basement steps. Long empty of groceries, each bag is filled with another sweet necessity entirely. I inspect these bags every time I pass by – even as I struggle with armloads of laundry on my way to the washing machine. I confess I just can’t help myself.

I think about what’s inside these bags and it always makes me smile.

These six brown bags have been hiding in my dark unfinished basement since early November. I remember packing them the night of the first fall frost, using sections of the Sunday Inquirer as insulation from the basement dampness. I look at the bags in my basement day after day, week after week, through the cold winter months and think the same thought over and over again: spring is coming.

It’s all about time, actually. Time passing. Looking forward in time. It’s quite intentional on my part. Ritualistic, even. You see, I look at the six brown paper bags and mentally project myself to springtime.

Maybe it’s just that time of year right now. All these months of cold, grayness and snow; oh yes, I’m more than a little winter weary. Somehow this brown bag ritual serves me, gets me through. Keeps me upbeat and hopeful, believing that spring will arrive and that I will be here to celebrate the season again.

Cummings-Alysa_mediumDuring the third week of March, these six bags will make the trip up the stairs, out of the dark, into the light, through the house and outside to the turned over and weeded perennial beds in the backyard. For the occasion, I plan to eagerly break out a fresh pair of gloves, slip into my most comfortable stained and well-worn gardening sneakers and (drum roll, please) break open the bags.

By mid-March it’s high time to check on the health of my collection of canna bulbs. Some will have rotted, unfortunately, but the majority will be pushing out pale green shoots; ready for planting in my garden. Early spring is the time to get these bulbs back in the ground so that, come July, there will be an amazing field of five foot plus high plants with wide tropical fronds and enough brilliant tomato red colored flowers to stop traffic.

I started this cycle of planting and digging up canna bulbs the summer after my cancer diagnosis. Now (happily) heading into year fifteen of my cancer journey, this bulb-in-the-basement routine is a conscious part of my survivorship strategy. I recommend it highly to my fellow green-thumbed survivors!

Until the buds start peeking out on the trees, until temperatures creep above 32 degrees, keep your heart and spirit as warm as you can. And as we all wait for the official arrival of spring on March 21st, please keep in mind the wise, often quoted words of Hal Borland, “No winter lasts forever, no spring skips its turn. April is a promise that May is bound to keep.”

Living Beyond Breast Cancer will host another Writing the Journey Series this Spring, hosted by Alysa Cummings. And the good news is that there will be two different Writing the Journey groups in Spring 2013 – one in Cherry Hill, NJ and one in Haverford, PA.  Check back to the LBBC Blog for more insights from Alysa Cummings and future Writing the Journey creations.  You can purchase your own copy of Greetings from Cancerland, on Amazon.com!


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