Join Our Annual Fall Conference From the Comfort Of Your Home

September 24, 2014

If you can’t come to our annual fall conference, Breast Cancer Today: Individual Treatments, Shared Experiences, you can still join us for the live webstream of our morning and closing plenary sessions. Read below to learn more about our webstreams.

eblastSquare400x400 copylivewebstreams copyYou may be in the middle of breast cancer treatment. You may be a single parent and can’t attend a conference far away. Other reasons make it difficult for you to travel long-distance.

At Living Beyond Breast Cancer, we understand that you may experience obstacles that prevent you from attending a national conference that isn’t within an easy driving distance or close to public transportation. That’s why we’re bringing parts of the conference to you through free, live webstreams!

Join us on Saturday, September 27, from the comfort of your own home. Watch our morning and closing plenary sessions and ask our experts your questions! Through our webstreaming, you will be able to watch:

Morning Sessions 9:30 – 10:45 a.m. (ET)

  • Triple-Negative Breast Cancer: What We Know, What We Are Learning, How You Can Help with Rita Nanda, MD (presented in partnership with Triple Negative Breast Cancer Foundation)
  • Hormone Receptor-Positive or HER2+ Breast Cancer: What’s New in Targeted Therapies with Virginia Borges, MD, MMSc
  • Metastatic Breast Cancer: Treatment Strategies with Clifford A. Hudis, MD

Closing Sessions 4 – 5 p.m. (ET)

  • Thriving! A Discussion on Living Well—Body, Mind and Soul with Virginia Borges, MD, MMSc Lisa McLaughlin, MSW, LSW, OSW-C, and Marisa C. Weiss, MD

Read the rest of this entry »

What Courage Means To Me

September 19, 2014

image (2) Regular LBBC guest blogger and LBBC Breast Cancer Helpline volunteer Ronda Walker Weaver is back and this time she’s defining what the word courage means to her. Not only in her breast cancer journey but in her life in general. What does courage mean to you? Leave a comment and let us know!

A couple of weeks ago at church the speaker gave the congregation a challenge – “Do something courageous.” He then shared the story of his grandmother who bravely sought out “truth.” I thought of the saying, “Courage begins at the end of your comfort zone,” and I wondered what I could do that would take courage.

I thought about dying my hair pink. I thought about getting a tattoo. I thought of jumping off the high-dive board. I thought of driving across the Golden Gate Bridge. I thought about eating escargot. I thought of shaving my head. And really, these don’t take courage for me, just a little bit of dare.

So I thought about the things that I’ve done that are courageous. And I found a common tie to all of them. This is my definition of courage:

Courage is having the second child. Courage is having the second chemotherapy treatment. Courage is getting married for the second time. Courage is shaving my head before my hair falls out. Courage is quitting my job to do cancer full-time. Courage is asking my husband to sit by me while I throw-up, for the third time that day. Courage is crying for my mother to hold me in her arms while I weep in exhaustion. Courage is asking my neighbor to help me change the sheets on my bed. Courage is going to the gym bald, puffy, weak, gray, exhausted. Courage is smiling. Courage is getting back on my bike. Courage is climbing to the top of the mountain, the second time. Courage is job-hunting. Courage is saying “no” to the job I need but don’t want. Courage is having a mammogram after finishing treatment. Courage is going shopping with down-soft gray stubble covering my head. Courage is returning to the classroom with chemo-brain. Courage is becoming friends with women who have cancer. Courage is listening to other women’s stories. Courage is sharing my story.

Courage comes with the “doing again” what was hard the first time.

As I have pondered the speaker’s request, I have come to a great realization. I’m a survivor, I’m stronger, I’m a hero, I’m a warrior, but more than anything, I’m a courageous woman – I got back on that bike after I fell and blew out my elbow, I had my second chemo after the first made me so deathly ill, I share my story – in all of its utter-truthfulness. I am courage. This, this is the face of courage. And I am proud to wear the scars that tell my story.

Courage is not the absence of fear, but the ability to move beyond that fear.

Ronda is 55 years old. She was diagnosed with breast cancer on Thursday, Sept. 6, 2012. She went through surgery, chemotherapy, and radiation. She teaches folklore and writing at Utah Valley University and works for an online education company, LearningU. She is using her recovery time to read, listen to music, garden, walk, play with her grandchildren, children, and enjoy her dear husband – who has been her pillar of strength through her journey. She also writes her own blog called Folklady’s Adventures.

Did you enjoy Ronda’s blog? Here are a few links to her previous posts that you might enjoy as well! 

Living In The Moment: The Best Lesson Cancer Has Taught Me

Let’s Be Frank…

Stop Just Existing…Remember to Live! 

A Letter To Myself

Reflecting on the “Let’s Talk About It” Series Video Shoot

September 15, 2014

20140912LTAIbehindscenesOur Young Women’s Initiative recently launched two videos as part of the “Let’s Talk About It” Video Series. Arin Ahlum Hanson, MPH, CHES, manager of the Young Women’s Initiative, wrote this post about the day of the shoot and working with the young women and video crew who helped create the additions to this series.

I always have a hard time sleeping the night before running the video shoot for the Young Women’s Initiative Let’s Talk About It Video Series. Yes, since I’m managing the project my brain is swimming with logistics, which does make it hard to relax. But I mainly can’t sleep because I’m so excited. I’ve quickly learned that these video shoots are one of my favorite work days of the year. I’m excited to meet the amazing young women from across the nation who have agreed to be a part of our video project and want to share their experience to help other young women cope with breast cancer.

Each year, the video interview participants seem to have no hesitations about arriving, meeting the group of strangers running the video shoot and then quickly launching into in-depth conversations about subjects that rarely get talked about openly.

This year’s April video shoot was no different. Assembly, the video production team, arrived with a 10-member crew and quickly set up the shoot in a small hotel room. Together, we spent the next 12 hours filming. Eight young women and three healthcare providers participated in the video shoot. Some of the young women were nervous when they arrived but relaxed once the interview started. Others had fun learning new make-up tricks from our stylist. Read the rest of this entry »

“If I Can Make a Difference In ONE Person’s Life, Then I Know This Journey Was All Worth It”

September 9, 2014

imageToday we introduce Jessica, LBBC friend and guest blogger, who is sharing her breast cancer journey and how she came to discover LBBC’s Yoga on the Steps: Denver.

My journey started at the early age of 40 in late September of 2013 when I was sitting in what I call, ironically, my “happy place”. My happy place is a small chair in my bedroom next to  a large window where I look out at the mountains, decompress and think of my day, my family, what I am doing the next day or maybe what I am making for dinner. I remember standing up to go downstairs and feeling that something felt strange and cold. I checked under my shirt and saw that I had a small amount of discharge from one breast that had stained my shirt, and when I say small, I mean tiny – it was hardly visible. I changed my shirt and didn’t think twice about it and went on with my day which was having lunch with one of my best friends. We usually talk about our kids, school or maybe something our husbands did wrong the night before. That day, however, was different, for some reason we discussed what its like to get older, our aches and our pains. We laughed, and I remember the words I said to her exactly “at least you don’t have liquid coming out of your breast! A few more laughs and as always, I left, picked up my kiddos from school and went on with my daily routine.

 

A few hours later, I was sitting at home and got a call from this same friend. “Jess”, she said “I just talked to my Mom and I mentioned our discussion to her, the one where you told me about “liquid and breasts, her words to me were “My mom thinks you need to get it checked out, my Mom is a mammographer and she thinks it’s no joke”. Honestly, that is when my life changed, in an ironic twist of fate, a comment I made as a joke, saved my life.

Read the rest of this entry »

It’s About You: Lynn Folkman’s Story

September 4, 2014

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.   Read the rest of this entry »

Chemotherapy Made Me Realize My Hair Doesn’t Define My Beauty

August 30, 2014

TiffanyLBBC guest blogger Tiffany Mannino has been sharing with us personal journal entries written in letter format penned to her unborn daughter while traveling through her breast cancer journey. In her collection of letters Beautifully Broken: Letters From a Girl/Woman/Human in Progress she reflects on her five year journey with letting go of the past, facing fears, learning to love, finding happiness in the moment, and realizing that she is exactly where she is supposed to be in life. Here she writes to her daughter about her feelings of being 4 days away from completing her chemo treatments.…


June 5, 2010

 

Dear Lola,

 

I have very exciting news… in four days from now, I will have my very last chemo treatment and then I will be finished with this little phase of my life!  Who knew a few months ago that I would be excited about receiving a chemo treatment? It is amazing how much one’s perspective changes over time.

 

Speaking of changing over time, I cannot believe how much things have changed for me in the last month!  It is such a miracle how different I feel on my second chemo regimen.  I remember writing to you at the end of April and was literally a depressed mess. I felt weak, mentally drained, and spiritually barren.

 

Lately, I just feel excited most of the time. It is so true about the mind-body connection.  When you don’t feel well, it’s very hard to stay upbeat and positive.  Under the new chemo, I don’t feel nauseous anymore, I can taste and enjoy food again, and I have way more energy. With more energy, I actually have been able to do a little traveling.  I’ve taken short trips to the beach and also to Niagara Falls.  Being able to get out of town on my off-chemo weeks does wonders for my spirit.  Looking at the ocean or falling water can simply breathe life into your soul!

 

I feel like I have come such a long way in so many ways. I’m sure you remember me writing to you expressing my complete disdain for how chemo was going to change my appearance.  I know I was absolutely dreading losing my hair which I had been overly attached to my entire life.  Well, I can honestly tell you that I accept my new look. I am ok with looking in the mirror and seeing a bald woman.  Don’t get me wrong, I’m looking forward to having hair again, but I realize it doesn’t define my beauty.  And do you know what…God works in mysterious ways.  One of the reasons I was so attached to my hair is that I felt like I could hide my face with my hair.  I’ve had blemished skin since I was about 13 and having long thick, crazy red hair distracted everyone from my face.  Maybe God wanted me to really look at my face. Would you believe since chemo started I have had the clearest skin of my entire life!  I’m not kidding. It’s soft, clear, and oil-free! God performed another little miracle.  For some reason, he allowed me to keep my eyelashes and eyebrows. It may seem like such a minute thing to think about, but I’m so thankful to have them.

Read the rest of this entry »

It’s About You: Kate Garza’s Story

August 26, 2014

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KateGarza2 for 5 28Kate Garza is back with a new blog post for our fall conference blogging series, It’s About You. The yoga instructor, writer, wife and mother of three discusses the “breast cancer journey” concept, while discussing her own and her anticipation of Breast Cancer Today: Individual Treatments, Shared Experiences.

Everyone calls it a journey – the breast cancer journey. And if I weren’t so sick of that term, I would use it, too. It is descriptive to a point, and it allows other people to remember that you are not living the life you had in mind anymore. But this so-called “journey” is really more the life equivalent of being kidnapped, thrown into the trunk of a car and driven in the dark to an unknown location. That’s the image that flares in my mind anyway, when I hear “journey with breast cancer,” a junket with only sketchy clues about where you may end up. 

I was diagnosed with stage II invasive breast cancer at age 53, almost 2 years ago now, when my kids were 15, 16 and 17 years old. Life would have been complex enough with three kids moving up and out, but throw breast cancer on top of that project and I had more moving parts than I could track with sophisticated software. 

I had a fairly garden variety diagnosis of estrogen receptor-positive/HER2-negative breast cancer. I followed the standard treatment with lumpectomy, 8 cycles of chemo and 30 doses of radiation therapy. It was the most difficult health crisis I had run across in my life and treatment left me exhausted and brain-fried, but grateful that I traversed without complication. I finished a week before number one graduated from high school. After a month off for R&R, I began taking an aromatase inhibitor (AI), letrozole. 

After 3 months of difficult joint pain side effects, I switched to anastrozole. Again, the difficulties with pain and mobility arrived, but I stayed with the second medicine for 6 months until, completely frustrated and full of pain with every movement, I gave up. I was done. I couldn’t see the point of prolonging a life that felt this bad. Did I mention that I am a yoga instructor? I couldn’t move. Not even enough to practice the yoga that might help me feel better. And working, in my chosen profession, was out of the question. So by the time my second child graduated this past June, I was 2 months into my medication vacation and starting to feel much better. I could move again. Pain with walking and the sleepless nights were beginning to fade away.  Read the rest of this entry »

It’s About You: Laura Ross’ Story

August 15, 2014

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LBBC would like to introduce our newest guest blogger Laura Ross. Today she shares her breast cancer journey and how she became familiar with LBBC’s programs and services, specifically our annual Fall conference.

Driving on I-95 South in Philadelphia, late October 2011, I passed a billboard for Breast Cancer awareness month. “Ah” I said, “I never want to be part of that club!” One month later I would be handed my membership, and would begin a journey that changed my life.

November 18, at age 41, while snuggling my 3-year-old daughter Aliya, her head hit a hard pea sized spot in my upper right breast. Calling my other daughters, Gianna and Isabella, into the room, I asked them if they could feel it too, and indeed, they said they could. I didn’t really think too much of it. I had never even had a mammogram. I called my gynecologist and made an appointment. She too, could feel it, and scheduled the mammogram for early December.

After the testing was over, the doctor who performed the biopsy looked at me and said, “This is definitely breast cancer, when you get the results on Monday expect it to be cancer.” Uh. OK. I was completely shocked. I was completely alone. Read the rest of this entry »

At 17 Weeks Pregnant The Verdict Was In: Breast Cancer

August 7, 2014

imageToday we’d like to introduce our newest LBBC blogger, Stephanie Hulse, who was diagnosed with Stage 3 Triple-Negative breast cancer at 17 weeks pregnant. Here she shares her story about navigating her diagnosis and treatment while pregnant with her 4th child…

Our family was almost complete. My husband and I agreed early on that we wanted to have a lot of children and we simply adored the 3 that we had, so you can imagine how excited we were when we found out that baby number 4 was on the way! Our children were young at the ages of 6, 4 and 1 so we waited until the second trimester to tell them about the new baby and we waited a few weeks more to tell our families. Everyone was SO excited. It’s because of the new baby that I was seen by my midwife; I knew a I had a lump in my left breast but since I was breastfeeding I thought it was a blocked duct. The lump had been there for quite some time and cancer had never crossed my mind. They urged me to try to massage it to unblock the duct, so I did, and it grew. This immediately raised a red flag for my midwife who urged me to have a biopsy. I went, and at 17 weeks pregnant, the verdict was in: Breast Cancer.

On January 22, 2013 my world stopped as I spoke to my midwife over the phone. “It looks like your biopsy will need some follow-up” she told me, “you’ll want to write this down.”  It’s amazing how my hand kept writing the words she was telling me, but my mind had stopped paying attention to what she was saying. Invasive Ductal Carcinoma. “Carcinoma, that sounds like cancer” I thought to myself, while continuing to write. That’s when it began to sink in. The lump that I had was cancerous? How could that be? I’m 30! I have no family history of cancer! And on top of everything else, I’m pregnant. As I’m writing down information about Triple-Negative breast cancer, I can feel the baby kicking inside me. So many things ran through my mind all at once, not only about my fate, but her fate as well. My husband walked through the door and he instinctively knew the news was bad; between sobs, I was able to choke together the words “it’s cancer”.
Read the rest of this entry »

Li-Fra-What?

August 5, 2014

IMG_2502LBBC guest blogger Kate Crawford’s family was no stranger to cancer of all types, but after she was diagnosed at the age of 28 with HER2 + metastatic breast cancer the family started to wonder if genetics were to blame and urged her to undergo genetic testing. Today she shares her story on making the decision to have genetic testing and how that affected her and her family, including her young children. 

I was 28. I had no family history of breast cancer, but had a family history of cancer in general. My mother was diagnosed with thyroid cancer at 27, my grandmother died as a result of an incurable brain tumor and my grandfather had pancreatic cancer. One thing everyone pondered when I was diagnosed was: why? Why would an overall healthy young woman present with metastatic breast cancer? It is an extremely personal decision to have genetic testing. More than half of gene mutations are hereditary which means a diagnosis of an abnormality may mean your mother, sister, niece, cousin or your child could also be at risk.
I was worried about my children and decided to meet with the oncology genetic counselor in early 2013. It was one of the most informative meetings I had concerning my diagnosis. She explained to me how genetics play a role in cancer. Genes are fragments inside of cells, which are in chromosomes, and made of DNA. DNA contains the instructions for building proteins, which controls the how the cells make up your body. If there is a mistake in one of your genes, those cells will not grow and function properly which can lead to genetic abnormalities, like being more prone to develop certain cancers. She suggested that I be tested for the popular BRCA 1 & 2 gene mutations. A simple blood test and a little bit of waiting revealed that I was negative for a BRCA abnormality. “I would like to have you tested for one more thing.” she quietly stated, “Li-Fraumeni Syndrome”. “Li-Fra-what?” I asked. Read the rest of this entry »


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