It’s About You: Lynn Folkman’s Story

emailHeader760x1604_BlogResizeAt this year’s annual fall conference, Breast Cancer Today: Individual Treatments, Shared Experiences, we’re not just providing you with the unique information you seek; we’re offering you the chance to connect with others and learn that you’re not alone.  While being treated for breast cancer, Lynn Folkman went to her first-ever LBBC fall conference in 2009. She blogs about that day and the importance of creating the conference experience you want. Lucky for us, Lynn joined the team at Living Beyond Breast Cancer in 2012 as our Community Engagement Manager.

Lynn Folkman LBBC Fall ConferenceIt was fall 2009 – I had just completed chemotherapy, radiation therapy and was a few months into my year of taking trastuzumab (Herceptin) and I was exhausted. I found out about the LBBC Annual Fall Conference through one of my support groups and the thought of attending alone was too overwhelming for me, so I agreed to attend with a friend I met during treatment.

The conference that year was held at the Pennsylvania Convention Center. I was a bit nervous about attending, as I had previously worked at the Convention Center and still knew quite a few people there, and they did not know that I had breast cancer. As well, the tables were turned; I was a meeting planner and instead of producing the event, I was experiencing the conference as an attendee.

I was in an emotionally raw and vulnerable state. I was at the point in my treatment where I often wondered if or when I would ever feel like myself again. I was tired of hearing the comment, “You look really great!” I longed for a day where I could be invisible and no one would know that I had breast cancer. However, I was still mostly bald and there was no masking what I was currently experiencing. I was apprehensive about having to endure glances from people who knew me, which would be mixed with a combination of sympathy and trepidation.  They were used to the vivacious energetic Lynn, not the exhausted Lynn.  How could I possibly fake it when I did not even have the energy to do so?

A few things occurred that day which continue to deeply comfort my mind and spirit and reinforce the special place in my heart for the LBBC Fall Conference. Since it was my first time attending, I had no idea what to expect. The day began with the opening session, the speaker welcomed the group and then asked people how far out they were from the time of their diagnosis. When your year was called, you were instructed to raise your hand. One year and under, my hand went up. I don’t remember the exact breakdown, but it went something like this: 1-5 years, 5-10 years, 10-15 years, more than 15 years and so on.  What I do remember is being overwhelmed as I heard cheers and looked around the room and saw so many raised hands and proudly smiling faces.   Continue reading

The Annual Fall Conference Is This Weekend!

randi rentzLong-time LBBC blogger Randi Rentz will be attending her very first fall conference hosted by LBBC! After receiving her brochure in the mail weeks ago after much anticipation, Randi shares with us what she’s looking forward to the most…

I am super excited to attend Living Beyond Breast Cancer’s Annual Fall Conference on October 26th and October 27th at the Double Tree Hotel in Philadelphia. Wowsy. I can’t wait to get the latest information on breast cancer from some of the nation’s top experts.

Did you know Suzanne Dixon, MPH, MS, RD is one of the speakers? She is an internationally recognized expert in nutrition, chronic disease prevention, public health, and epidemiology, with over 150 invited lectures to professional and consumer audiences. Double WOWZA! Continue reading

A familiar face, a familiar story

This entry was written by Jackie Roth, PhD. Jackie is a Postdoctoral Fellow at The Children’s Hospital of Philadelphia who was diagnosed with Stage III A breast cancer at the age of 28. Every other Friday, throughout the entire year of 2011, Jackie will share a blog entry about her breast cancer experience. This year-long blog series is in honor of LBBC’s 20th anniversary.

To read Jackie’s previous entries, enter “ Jackie Roth” in the search box on this site.

A few weekends ago I attended LBBC’s annual Fall Conference in Philadelphia with hundreds of other women who were at all stages of breast cancer and recovery.  This year was my second year going to the conference.  I attended last year just three short months after my diagnosis, and now here I am again, one year later.
At this conference, survivors wear colored leis to designate how far out from diagnosis they are.  Last year I wore the lei that represented less than one year out from diagnosis, which was white.  But this year I was happy to join the ladies wearing orange leis, although orange is tied with red for my least favorite color!  But I was proud to wear orange that day.  The orange leis represent women who have been diagnosed more than a year ago, but less than 5 years ago.

I arrived at the conference early in the morning and found myself a little lost when I was looking for a table to eat my breakfast.  I realized that I didn’t know anyone there!  That is when I went back out to the lobby and saw my friend Katie who works for LBBC.  It was so comforting to see a familiar face, although I’ve only seen her once before at the conference last year!  She pointed me in the direction of the tables of other young survivors, which is where I ate and made some new friends.

Jackie (left) and some of the young survivors that she shared stories with at the conference.

After breakfast and the opening session, I attended a fitness class with many other survivors.  I chose this workshop because I’ve been having rib pain post mastectomy and radiation. The pain has been getting me a little worried so I wanted to know if there was a way to stretch it out.  But I felt so comforted in the exercise session when the other young survivor sitting next to me said that she had the same type of rib pain as me as we were stretching to the side.  We were further put at ease when the instructor said that the serratus anterior muscle, which is located in the region where I am having pain, is often affected post surgery and radiation.  So we were relieved knowing that we were not alone with our rib pains!

After exercising we headed downstairs for some lunch and I ran into a bunch of other people that I knew.  My friend Stacia, who also works at LBBC, was sitting at one of the tables.  I met her at last year’s conference right after we set up my blogging!  In addition, I bumped into the woman who ran a program that I attended last year called “Look Good – Feel Better.”  It is a program for any woman cancer survivor that teaches you how to use make-up and other techniques to make you look good and feel better like the name suggests!  She remembered me from the program and was so happy to see me!  I highly recommend this program to everyone.   

Finally, I found some other young survivors that I had met before!  It turns out that I was never really alone at all that day.  How could I be?  I was in a room full of survivors and caregivers that were so welcoming and willing to share their stories.  I am definitely looking forward to the conference next year! 

Jackie (center) with LBBC staff.

To read Jackie’s previous entries, enter “ Jackie Roth” in the search box on this site.

Did you attend LBBC’s fall conference? What did you like most about it?

It wasn’t Breast Cancer Awareness Month just a year ago

This entry was written by Jaime Rossano. Jaime was diagnosed with 2B invasive ductal carcinoma breast cancer. Jaime is a college student pursuing a degree in Humanities and Social Science Every other Friday, Jaime will share a blog entry about her breast cancer experience. This year-long blog series is in honor of LBBC’s 20th anniversary.

To read Jaime’s previous entries, enter “Jaime Rossano” in the search box on this site.

Well, I guess you can say “it’s October.” When October approaches, I find myself consumed with many worries and emotions. In the past, when October would come around I would think of how much I miss my grandmom and how her birthday was at the end of October. I would remember the times we had shared together. A few years ago I found a birthday card for her and just put it in a box.

This October seems to be a little different, although I miss my grandmother dearly, I have been thinking so much about this time last year. October 29, 2010 was when I found out I had breast cancer. This October, although I am currently cancer free, brings out many thoughts of how I actually made it this far.

Just a year ago, I was drowning in my own tears and was desperate for an answer of why this is happening to me. Just a year ago, I was sitting in my doctor’s office figuring out my plan of action for survival. Just a year ago, I was lost, confused and so scared of what challenges I was going to have to face. Just a year ago, I realized how much my family meant to me but I was always afraid to share “the news.” Just a year ago, I didn’t know where I was going to be in the future.

It’s funny, well not really funny, but I always doubted myself. I actually made it through my surgery, chemotherapy and radiation.  I did it! I have had many struggles and challenges along the way and needless to say they are not over with yet but amazingly I got through it.

It’s hard now-a-days because I feel like I almost put in the back of my mind what I went through because life has returned to the normal “school, work, living-not-fighting anymore.”

 I know some people rather not use the word ‘fighting” cancer but for me, I was. I was fighting myself, I was fighting my body, I was fighting to make it through every day. I still feel like I am fighting because of all the little bumps in the road that I have had. I think I will always be fighting making sure this disease doesn’t come back to kill me. I have doctors’ appointments so regularly sometimes that I think they should give me an ez-pass to jump in line.

Fall conference: news you can use breast cancer updates for living well

“I was even fighting to make sure Ronnie could see his mommy.”

Not only does October have and important meaning to me but also, October is Breast Cancer Awareness Month. I have to say I have my box of tissues ready for all the commercials about self-breast-examinations and screening. Some are sad, some are cheerful, some I will relate to because it’s what I went through.

I am also looking forward to the new move coming out 50/50. At first, I was not too thrilled that they actually made a movie about this awful disease. But then I realized that the humor reflected in the movie was the only way I got through some of my treatments. My mom reminded me of that one. 

A few months ago I contacted the office of Healthy Campus Initiatives at Rowan University to see if there was any way I would be able to share my story. I am so excited to share that my story is going to be featured in Rowan’s Student Health 101 on-line magazine for October and I will be speaking on October 11th at Rowan University during a breast cancer awareness luncheon.

Not only is October bringing back memories, but this October, I am making memories.

If you live in the Philadelphia region, make a memory by joining Living Beyond Breast Cancer as we kick off Breast Cancer Awareness Month by hosting our annual fall conference, News You Can Use: Breast Cancer Updates for Living Well, tomorrow, Oct. 1st. Fee waivers are available at-the-door and walk-ins are welcomed.

These twins have more than identical looks in common

This entry was written by Diane LeBleu of Austin. Diane lives with her husband Tom of 18 years and their four children Danielle (13), Travis (11), Sabrina (6) and Caroline (5). She is was diagnosed with Stage 2 invasive breast cancer in December 2008, six years after her twin sister’s diagnosis and three years after they lost their aunt to a breast cancer recurrence.

Growing up with a twin sister, there are always the inevitable comparisons. Denise was the pretty one. I was the smart(er) one. Denise was a go-along-get-along girl. I was a little more, well, bossy is probably the nicest word. As a parent now, my husband and I try not to make similar comparisons. However, it is hard to restrain from making observations about the amazing way that children born to the same parents and raised in the same environment can turn out so remarkably different.

In addition to being the assertive one between me and Denise, I always assumed I was the courageous one. Denise was timid and more of a follower. It turns out I was wrong.  

Denise was diagnosed with breast cancer when we were only 33. She was the first person I ever knew to get breast cancer or any cancer for that matter.  Breast cancer wasn’t something you get in your 30s. Denise bravely faced a lumpectomy, chemo and radiation all the while working full-time and coming home to her family at the end of the day. Denise was in San Antonio and I was living in Austin; therefore, my help consisted mostly of prayer and encouraging phone calls as I was home with my own young children.

My ‘This is Cancer’ phone call came as NO surprise when I was diagnosed at age 39. Upon Denise’s diagnosis in 2003, her doctor encouraged her to enroll in a new test that would see if she carried ‘the breast cancer gene.’ Curiously or not, my twin and I share the same exact mutation in our BRAC1 gene. The fact that we were both in our thirties when our cancer was detected tells us that our mutation may be pretty significant.

In the meantime, on the heels of my twin’s diagnosis at age 33, I immediately went to see my OB/GYN to make sure I was on the schedule for regular mammograms. I was doing diligent self-exams to identify any lumps – as my sister had found with her Stage 2 diagnosis. At that time, we didn’t really discuss undergoing a gene test in my case. I did everything I was supposed to be doing in the matter of due diligence – I still got breast cancer.

I hoped I had a long life ahead of me – so I decided to let my surgeon ‘take it all.’ I knew that Denise was still undergoing a mammogram or MRI every six months as she held her breath as the doctor would hopefully give her an “all clear.” I wanted to live – but not that way.

I’m nearly three years out from my surgery and treatment. I had my ovaries removed to reduce the risk of developing ovarian cancer. I’m told by my friends and family that they admire me for my courage and ability to smile and laugh throughout my breast cancer experience. I was reacting in the only way I could weighing two options – Deal with this for me and my family? – Or – Wait for cancer to come back?

My sister – the one I thought that I had the leg up on for bravery – decided to undergo a prophylactic bilateral mastectomy followed by a hysterectomy and ovary removal. This to me is the epitome of courage. Some people would look at her and say, “Well, you are a seven-year-survivor, you don’t need to do that! What a crazy, paranoid woman.”

My genetic make-up is now in my four children. My children will be sooner, rather than later, at an age when they will be the owners of their health maintenance. My daughters may or may not have this mutation (my son as well, because men CAN get breast cancer too) and what will I tell them? “Don’t wait to get cancer. Take it all before you are faced with a short list of chemo and radiation options.”

The thing I CAN tell them is this. “Do those self-exams, be self -aware and if anything suspicious turns up, don’t be too afraid, ashamed, busy, or even financially unable to get it checked out. You won’t be sorry you asked the question of your medical professionals.”

Of this, I AM certain.

When not blogging about motherhood and breast cancer, Diane is busy launching her product for those who have undergone breast surgery. Her new product, Pink Pockets, is designed to solve the uncomfortable problem of drains after surgery.

Join Diane for LBBC’s Fall Conference – News You Can Use: Breast Cancer Updates for Living Well. Fee waivers are still available! Diane is looking forward to attending the New Insights into Triple-Negative Breast Cancer and Genetics workshop. This workshop will explore the connection between BRCA1 and BRCA2 genetic mutations and triple-negative breast cancer.

For more information about the conference and the workshops, visit LBBC’s website.

Be fierce, be fit, be kind, be happy, be you…

This entry was written by Jackie Roth, PhD student at Thomas Jefferson University. Every other Friday, starting in January throughout the entire year of 2011, Jackie will share a blog entry about her breast cancer experience. This year-long blog series is in honor of LBBC’s 20th anniversary.

Allow Jackie to introduce herself:

There is so much going on in my life right now. I am 28 years old, a newlywed and I am pursuing my PhD in Genetics at Thomas Jefferson University. Interestingly, the focus of my research is breast cancer. My life took a huge turn in the summer of 2010 when I, the researcher, became the patient. 

living beyond breast cancer, 20th anniversary 2011, jackie roth

Jackie and her husband, Ron. Jackie is a happy newlywed!

In March of 2010, I felt a lump in my breast and I went to my doctor to get it checked out.  She said that it was a cyst and that because I am so young, there really wasn’t anything to worry about.  Reassured that it was nothing, I went on with my life normally for the next three months.  But the lump got bigger and I became persistent, getting a mammogram, ultrasound and biopsy on June 29, 2010.  I could just read the radiologist’s face during my biopsy and I knew what was coming… 

Yup…cancer.  Stage III, ER/PR+, HER2-, Grade 3, Node Positive, no BRCA mutations.  The overall plan is chemotherapy, followed by surgery, then radiation. I have had numerous obstacles and changes in my plan along the way: a very low white blood cell (WBC) count that won’t rise on its own (this lead to an 8-week delay in treatment), a change in treatment numbers from 16 down to 8 and my oncologist went on maternity leave. Not to mention, I may have a parasite infection in my gut, which I learned of during my honeymoon.

But there is light at the end of the tunnel. Joining organizations like LBBC have helped me get through this whirlwind!  I met so many great people, especially at LBBC’s fall conference this past November. I think of the conference everyday because I’m still wearing my Wish Bracelet that we tied on each other’s writs at the end of the conference.  My part of the bracelet says “Be Fierce, Be Fit, Be Kind, Be Happy, Be You” and I’ve tried to apply these words to my life:

Be Fierce: After having long ringlet curls all my life, I would say that walking around with a buzzed pixie haircut is pretty fierce!  My hair grew back in during my delay in treatments, but it’s on its way out again just in time for the cold. 

Be Fit:  Does using my Wii count? 

Be Kind:  I can’t even begin to count the ways that people have been so kind to me throughout this time in my life.  It brings me to tears thinking about what everyone has done.

Be Happy: This holiday season I really have so much to be happy about: a wonderful new husband, supportive family and friends, and a great opportunity to really help the breast cancer community with the research that I do.  

Be You: This experience is going to be so different for everyone. I think we will all end up learning about ourselves along the way.  Being diagnosed with breast cancer has made me slow down, and stop to enjoy my life.  My resolution for the New Year is to continue to stay slow and make plenty of ME time.  I never really thought that I would be fighting this cancer in two ways at once, but here I am. I’m happy to share my journey with you… 

fall conference, news you can use: breast cancer updates for living well, sherry lebed davis

Be Kind…Be Fit…Be Fierce…Be You…Be Happy…

How are you applying these words to your everyday life? Tell Jackie how you plan to “be kind, be fit, be fierce, be you and be happy” in 2011 and beyond! Comment here or on our facebook page.

We are soldiers at LBBC’s fall conference

This entry was written by Julie Clark:

I arrived in Philadelphia for the annual Living Beyond Breast Cancer fall conference and it was a beautiful evening. Warm, by November standards. I have the night to myself and the capitol building is grand and pale and people crowd the streets. Several men in military uniform move along the sidewalk, soldiers on leave, perhaps, and I thank them for their service. They are brave.

In some ways, they are brave like the women who filled the conference on Saturday morning. Like us, they feel a kindred spirit – an understanding that is natural to those who face battle. They are thrown together, strangers from big cities and small towns, and yet they share intimate stories and tell jokes. Sometimes they cry. They are given heavy artillery that could, and will, kill. They wear the uniform of a special unit.

At the conference, our uniforms are different. They are pink and soft. We wear scarves instead of caps, and our badges are colored necklaces that mark our rank: white for one year of survival, pink for ten. Green is for those of us who have metastatic disease. Some of us have lost parts of our bodies, and some of us live with post-traumatic stress disorder. The room hums with sisterhood and courage and power and strength as we gather in groups for combat.

But the soldiers on the street are on leave. They volunteered for battle, but we in this room found ourselves drafted into a war we did not choose and cannot leave. When a doctor told me I had cancer I felt more like the victim of a suicide bomber than a soldier – the suddenness and the unexpectedness of this news found me completely unprepared. An enemy had attacked, and I was in my underwear.

There aren’t words for the shared experience of this, but here, in this room, we all feel it. As an only child I had not known the depth of sisterhood, but I feel it now. My sisters are of different ages and races and religions, old enough to be my mothers and young enough to be my daughters. We are united in this battle and, in so many ways, we are proud.

We are proud because we are strong. It is palpable, the strength in this room. We fight for ourselves and our families and our future – we fight for our faith. We pray that we will see this war end, and that those who do not fight beside us will never have to. And to my sister soldiers, to all of them, I say this: Thank you for your service.

fall conference, news you can use: breast cancer updates for living well, your love is the best medicine, julie clark, baby einstein

 

Julie Aigner Clark is the author of the picture book You Are the Best Medicine, which helps empower children to feel supportive during the cancer treatment of a loved one. Order your copy today!