Get [talking] with us. (Part 2)

This is the second of a two-part blog written by Living Beyond Breast Cancer supporter, Mark Plamondon. Mark’s story is one of many LBBC will be sharing with you in 2016 as we recognize 25 years of service to those impacted by breast cancer. Mark told the first part of his story earlier this week.

Lee’s breast cancer was back. It had metastasized to her bones, liver and brain. We were faced with both the knowledge of how she would in all probability die and the statistics to determine how long we had left together.  The luxury we had when first married and starting our family of measuring time in months and years had been replaced by increments of weeks and days. No matter how hard I tried, it was impossible to stop the voice in my head that kept asking “when.” Treatments began and ended.  We had good days.  We had bad days. We laughed and we cried. We felt connected.  We sometimes felt alone.

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Remember, this was during the mid-90s. People whose lives were being changed by life-threatening illnesses didn’t have access to the many resources we have today. People had to create them or as in our case, find them through circumstance and luck.  We learned about Living Beyond Breast Cancer from Lee’s radiation oncologist, Marisa Weiss. Marisa had started LBBC just a few years before for women to connect with each other to find information and to get support.

“It’s strange.  So much of that time is committed to memory for me, as clear as snapshots in an album. Yet, I can’t recall any one particular moment or conversation Lee and I had that cemented our commitment to Living Beyond Breast Cancer.”

It’s strange.  So much of that time is committed to memory for me, as clear as snapshots in an album. Yet, I can’t recall any one particular moment or conversation Lee and I had that cemented our commitment to Living Beyond Breast Cancer.  If I had to guess, I’d say it just happened over a period of time. We came to depend on LBBC, for the support we received and equally important for the support we were able to give. As I mentioned earlier, Lee was a great communicator. There are lots of good communicators out there, people who make answers to questions about complex issues and concepts easier to understand. But there are far fewer who actually take the time to listen to the question first. That was Lee. So it’s easy to understand why she found herself drawn to an LBBC resource that continues to this day.

In 1997 the Survivors’ Helpline launched nationally, but back then it was a local phone line. It was staffed, a few hours a week, by volunteer women diagnosed with breast cancer for women diagnosed with breast cancer. It was a place where callers could find someone else similar in age or stage of diagnosis.  It gave women the chance to learn they weren’t alone and that what they were feeling was valid and real and important.  That it was OK to talk about it.  To communicate.  As a volunteer, Lee found a purpose in helping others. It gave her the chance to use cancer instead of it using her.  It helped her assign meaning to it. I supported her and the passion she had for the service because it was contagious. She advocated for it, pushed it, helped grow it. She remained passionately committed to it until the day she passed away.

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Less than a year after she was gone, I got a call from LBBC’s executive director Jean Sachs.  A young man, who’d just lost his own wife to breast cancer, had called the Survivors’ Helpline.  He was distraught, mourning a loss he was unable to accept or understand. I was asked to call him.  I agreed.

When I did, we began our conversation learning more about each other. He was younger than me.  Not a huge difference but enough that we were at different places in our lives. He was without children and I had two young boys. Grief was an emotion we both were dealing with, but in very different ways. Yet we immediately felt a camaraderie. Regardless of our differences, we were connected by something that was both horrible and profound and it made me appreciate even more Lee’s passion to communicate with someone who shared an experience that had changed their lives in an unimaginable way. I’d been asked to make a call to help a stranger in need.  But somehow, it was helping me.  It felt RIGHT.

My relationship with LBBC has only grown stronger since then. I served on the Board for 10 years.  I’ve worked on numerous projects where my marketing experience was put to use, including expanding the Survivors’ Helpline and establishing it as a core LBBC program. It’s been amazing watching LBBC grow from a local organization helping those in the greater Philadelphia metro to a major player in the nonprofit arena, that helped over 500,000 people in need last year alone.  The Survivors’ Helpline is now called the Breast Cancer Helpline. This toll-free service receives thousands of calls every year from people across the country and even offers the option to chat online if it’s preferred.  People attend LBBC conferences from every state and even other countries.  Yet the more things change, the more they remain the same.  LBBC constantly exceeds expectations.  Each and every member of the staff is an embodiment of the LBBC mission and their desire to connect those in need to trusted information and a community of support is a passion that spills over into everything they do. They are committed, they want to help and they are great at it.

Before I sign off, I’d like to leave you with this.  What I’ve shared with you just happens to be the way Lee and I attempted to cope with the hand we were dealt. It’s just one story, one to include with millions and millions of others. But it was our story and now it’s my story and for that reason I hold it close.

Being diagnosed with breast cancer is tough. Caring for someone with breast cancer is tough. There isn’t a right way to deal with it or a wrong way.  How a person copes can differ in ways really big and really small. It’s important that I recognize that you must find a way through it that works best for you and you do the same for me. I would never suggest there’s one way that’s better than another.

But, I will say this. Talking about what’s happening in your life with someone is better than not talking. The Breast Cancer Helpline is staffed by people who can provide advice, and insight and hope. Callers aren’t only women with breast cancer. Diagnosed men have used the service, too.  So have caregivers, friends, lovers and spouses.  People just like you, who given the chance can share whatever is on their mind with someone who completely gets it.

You don’t have to go through this alone. There are people who can help if you take the first step.  Call the Breast Cancer Helpline.  They helped Lee.  They helped me.  I’m confident they can help you, too.  They may even be able to make things a little more RIGHT in your life.

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25th Anniversary Mark

The Breast Cancer Helpline is a service provided by LBBC. Helpline calls are answered live Monday – Friday from 9 a.m. to 9 p.m. ET. At all other times, just leave a message; calls are returned within 24 hours and often much sooner. Online chat is also available. Both are free and confidential.

If you have an LBBC story you would like to share as part of our 25th Anniversary Blog Series, contact Kevin Gianotto by emailing kevin@lbbc.org.

TNBC Aware: Meaningful Action in Honor of Her Shero

Triple Step Toward the Cure founder and CEO Lori Flowers contributed this TNBC Aware blog post about her late sister, Sheryl, who inspired her to start the triple-negative breast cancer nonprofit to educate, encourage, and empower women diagnosed with the disease.

Sheryl (right) with her sister, Triple Step Toward the Cure founder and CEO, Lori Flowers (left).

Sheryl (left) with her sister, Triple Step Toward the Cure founder and CEO, Lori Flowers (right).

Cancer does not run in my family.  But general health and longevity do. Both sets of my great-grandmothers lived to be almost 100 and were largely independent even into their last days. My grandmother is 97 and sharper than many half her age and both she and my mother look younger than their years. I always attributed this to our Caribbean heritage.  So naturally I expected that genetics along with the salsa dancing and the patacones we grew up eating would help carry my sister, Sheryl, and I into ripe-old age.  However, that legacy was not enough to protect my beautiful and brilliant sister who was diagnosed with triple negative breast cancer in January 2008 at age 40.

I had no idea what was required of me but I immediately went into action mode, and assumed a role that was a constant mix of caregiver, therapist, comedian, and cheerleader.  Despite the circumstances, there were many wonderful moments and lessons learned.  As the eternal “little sister,” I now had an opportunity to step up for my shero. Continue reading

TNBC Aware: From TNBC Diagnosis to TNBC Champion

Roxanne Martinez contributed this blog post for TNBC Aware. She reflects on her experience from getting diagnosed after learning she was pregnant, to becoming a triple-negative breast cancer advocate.

 

OLYMPUS DIGITAL CAMERATriple-negative breast cancer. I was devastated to receive the diagnosis in November 2010, shortly after learning I was pregnant. My entire life flipped upside down.

With a rollercoaster of emotions, I turned to the Internet to learn everything I could about the disease. None of what I read was encouraging about triple-negative breast cancer – the particularly aggressive type that is more likely to recur than other subtypes of breast cancer.

Prior to my diagnosis, I didn’t even realize that there were different types of breast cancer. With no family history of the disease, I was left to navigate the unknown and forced to become my own health advocate. Fortunately, I found online resources and support networks, such as the Triple Negative Breast Cancer Foundation and Living Beyond Breast Cancer, that connected me with other women battling the disease.

I knew I had found the right medical team to treat my breast cancer when I shared my intent to carry out the pregnancy and my oncologist informed me that there were options to do so. Timing would be everything in my case. Based on the size, grade and aggressiveness of my tumor, my medical team recommended a treatment plan that included an immediate mastectomy, followed by chemotherapy — all while pregnant.  I would begin chemotherapy during my second trimester, when research has shown to be safe for an unborn child.

After much research, soul-searching and prayer, I proceeded with treatment. Though it was a rough pregnancy, my baby’s resilience, along with fellow cancer survivors and a nationwide support network nicknamed Team Roxy, kept me going strong and inspired me through my journey.

The physical side effects of treatment were only part of the battle. Coping with breast cancer while pregnant made me an emotional wreck. There was absolutely nothing any doctor could tell me that would alleviate my fears. I wouldn’t be at ease until I could physically see and hold my baby. That time would come sooner than I imagined. Continue reading

TNBC Aware: Giving Back to Others Living with Triple-Negative Breast Cancer

The second post for TNBC Aware is written by Melissa Paskvan. Melissa discusses how she coped with diagnosis and treatment, what it was like adjusting to her “new normal” and how she gives back to others with TNBC.

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My name is Melissa Stukenborg Paskvan. I’ve been married for over 22 years to my high school sweetheart and our son just turned 13 years old.  I am very involved in the breast cancer community here locally as well with social media with sharing information and reaching out to women in their fight with triple-negative breast cancer. I also like to travel to meet several of my TNBC sisters.

My breast cancer experience began in August 2009. My husband and son had just left for vacation when I found my lump by chance. I felt something along my bra band line under my breast and my heart sunk. I was in disbelief that my worst fear was now happening to me. I reacted fast and two days later I got in for a mammogram followed by an ultrasound. My 2 cm lump did not show up on the mammogram images because I had dense breast tissues. It was thought to be just a cyst but I insisted on a needle biopsy right then and there.

Another two days went by, and I received the call from my doctor. I was 41 and diagnosed with cancer… I was numb. I never cried, I wasn’t angry but I was really scared, scared of the unknown. Suddenly, nothing else mattered, I couldn’t see pass “today”. Can you imagine all the fear racing through my head and trying to keep myself together, especially since my husand and I did yet tell our son?

Two long weeks later, I met with my surgeon who told me that I have a rare and aggressive form of cancer that doesn’t respond to hormone therapy. My surgeon told me that my tumor was invasive ductal carcinoma with negative receptors for estrogen, progesterone and HER2 but, she didn’t use the term, triple-negative breast cancer.  It wasn’t until I met my oncologist a month later that I learned my cancer was actually referred to as triple-negative breast cancer, when she told me that my cancer was aggressive and we’re going to be just as aggressive fighting it with dose dense chemo every other week.

I turned to the internet to learn more about this tumor of mine, and I was really frightened with what I read about its aggressiveness. So little was known about this disease 5 years ago. What I learned left me feeling defeated before my battle even started. Continue reading

My Caregiver, My Friend, My Sister

November is National Family Caregivers Month, and we’re marking it with a special blog post by Lynn Folkman, our community engagement manager. Lynn writes about her sister, Deb, who offered tremendous love and support to Lynn throughout her experience with breast cancer.

Deb and LynnMy sister and I were standing near the finish line for the Philadelphia Marathon this past weekend. We were eagerly waiting to catch a glimpse of my nephew and his fiancé so we could cheer and support them as they ran. While waiting to see them pass by, I enthusiastically cheered and clapped for all those running the marathon. I was overwhelmed at the number of all of those present showing support to those they love. With my sister by my side, I thought that she should be cheered for in the same manner as my caregiver.

Let me start by saying, I love my sister Deb. She is quite reserved and is one who does not like being in the spotlight. She has one of the biggest hearts and is one of the most giving and caring individuals I know. I have thanked her many times in a variety of ways to acknowledge her support during my breast cancer diagnosis and treatment; yet, I don’t think she fully understands the enormous positive impact that her caregiving had on my healing.

My sister and I were always close. During the time we shared as co-caregivers for my mom, who had laryngeal cancer, our bond became that much stronger.  Two months after my mother passed away, I had my annual mammogram. Two weeks after the results of my normal mammogram, I had a pain underneath my arm. Although my sister is no longer a practicing nurse, I asked her opinion. She encouraged me to go to the doctor for more information. The initial doctors visit led me first to an x-ray and then to an ultrasound, which was suspicious, and then on to a needle/core biopsy. My sister insisted on coming with me to the biopsy, and so her journey of being my caregiver began. I waited a few weeks for the biopsy results, but quite honestly after I heard the doctor say that 90 percent of these are benign, the thought of cancer left my mind. I was about to leave for a business trip for Miami when I received the call at work about my breast cancer diagnosis. Stunned and shocked, I hung up the phone and immediately called my sister. Her husband answered the phone and I managed to utter Deb’s name. He could tell that I was upset and my sister quickly picked up the phone. I was desperately trying to breathe, I gasped to find my voice to utter actual words, but ultimately found myself unable to speak. However, no words were required, the silence mixed with sobbing said it all – she understood, I had breast cancer. Continue reading

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: Relationships, Faith and Being Declared NED

Serenity KislingSerenity Kisling blogs about navigating her relationships, her strong faith and being declared no evidence of disease.

As I write, it’s the first day of 2014’s Breast Cancer Awareness Month. I’ll be honest: now that I’ve been declared NED (no evidence of disease), I don’t want to watch the Today show’s #PinkPower, or think about cancer. I am so traumatized by the last 7 years, and wondering if I was going to see my son’s third, fourth, fifth, sixth and seventh birthdays.

However, I want to reflect on my journey. Despite what I have experienced with my health and my family, I got through this journey with metastatic breast cancer through faith, laughter and by living my life.

First, let me say that the breast cancer journey sucks, no matter if you are lesbian or straight. I was initially diagnosed with stage III ER/PR-positive breast cancer in 2008, at age 35. I had a 2-year-old son and a different partner at the time. At that point, my relationship with my partner was rocky, and she was not very emotionally supportive while I had breast cancer. She had no idea what I was going through: being bald from chemo, becoming so sick because of the chemo that I could not drink or eat anything, ending up neutropenic, dehydrated and in the hospital for a week and developing pneumonia.

In 2009, my then-partner and I celebrated when oncologists declared me in remission. We thought life would go back to normal and not the “new normal” commonly associated with post-treatment — just “normal,” period. It seemed like I was better after finishing treatment. I even went back to my hardcore workouts. But then I started feeling fatigue, and with that came insomnia. Life became miserable for various reasons, and I decided to divorce my partner. It was the hardest decision I have had to make thus far in my life. Through all of this, maintaining my positivity (though hard at times) and my faith got me through this major life change.

Something that made me depressed was that the oncologist who declared I was in remission did not discuss preserving my fertility before I proceeded with chemotherapy, and now it’s too late. I had been in survival mode, I had a beautiful son, and having another child hadn’t crossed my mind. I wish now I had frozen my eggs. I would have loved for my wife to carry my child. Even though I live with this regret, I have come to realize that it may not have been meant to be, and I must accept this and cherish my one beautiful son. Continue reading