“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 »

Getting On Track – LBBC’s Reimagined Fall Conference

July 30, 2014

emailHeader760x160Our annual fall conference features three tracks because breast cancer is not just one disease. Clifford A. Hudis, MD, chief of the breast medicine service and attending physician at Memorial Sloan Kettering Cancer Center in New York City, wrote this blog post about the reasons for these tracks and how breast cancer treatment became more individualized. A member of LBBC’s medical advisory board, Dr. Hudis will lead our morning plenary session on metastatic breast cancer. 

Hudis_lbbcblogpostGiven LBBC’s recognition that not all breast cancer is the same and not all patients need the same information, it is natural to see that the annual fall conference, Breast Cancer Today: Individual Treatments, Shared Experiences, is organized in tracks that enable participants to most efficiently focus on what they find to be most relevant. 

Not Just One Disease

Starting with oncology pioneer George Beatson’s 1896 report that some, but not all, women with advanced breast cancer responded to treatment that reduces estrogen in the body, it was clear that we confront more than one, uniform disease. The subsequent description of the estrogen receptor by cancer researcher Elwood Vernon Jensen in 1958 simply allowed us to test for what we already knew – that some cancers are more or less likely to respond to hormone therapies.

The more recent description of the human epidermal growth factor receptor–2 (HER2) and the development of effective treatments that target it added another dimension to “binning” breast cancers. With effective hormone and anti-HER2 therapies we can no longer pretend that cancer is cancer is cancer. One size does not fit all, and one disease is not the same as another.  Read the rest of this entry »

It’s About You: Lu Ann Cahn’s Story

July 23, 2014

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  Cahn_photo2014We would like to introduce you to our blogging series, “It’s About You.” In addition to telling you their personal story, our bloggers in this series talk about their experience with past LBBC programs and/or their anticipation for the upcoming fall conference, Breast Cancer Today: Individual Treatments, Shared Experiences. Today, NBC10 reporter Lu Ann Cahn kicks off the series by sharing her breast cancer journey and the importance of connecting with individuals who share your experiences.

I was talking to a woman who just got through her second year of survivorship. We’d made a lunch date to talk about work, business opportunities.

I’d almost forgotten she’d had breast cancer until she mentioned she was dealing with horrendous hot flashes.

“The tamoxifen is making me crazy” she said.

“How are you feeling otherwise?” I asked

” Oh fine. I just want to forget about IT and move on.”

The IT she didn’t want to dwell on was Breast Cancer…and yet we spent the last twenty minutes we had together during our meeting, sharing our experiences, listening to each other.

I wished we’d started talking about it sooner. As much as she wanted to “forget”, I could tell it was a relief for her to talk to someone who has been there; someone who you don’t have to explain too much to, so much is already understood.

Her emotions were close to the surface; which is probably why she said she wanted to “forget about it”. Tears welled up in her eyes as she talked about how terrifying it’s been, the diagnosis, newly remarried, with a teen son.

I know . I remember.

It has been 23 years since I was diagnosed with an aggressive breast cancer. My daughter was four years old. The year before breast cancer, I was hospitalized for 5 months. I had to have my colon removed because of severe ulcerative colitis. I was just recovering and feeling better when I started to feel a vague mass in my right breast. Read the rest of this entry »

LBBC’s Annual Fall Conference is for You!

July 16, 2014

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LBBC’s Annual Fall Conference, Breast Cancer Today: Individual Treatments, Shared Experiences, has a new look and feel. Catherine Ormerod, VP of Programs and Partnerships shares her highlights for the conference, taking place on Saturday, September 27, 2014 Philadelphia, PA.

Catherine-Ormerod 1Breast cancer research and treatments are constantly changing. It can be difficult to stay current with and understand the impact of these changes on you and your life. That’s why we have adapted this conference to connect you to trusted specific information. Consulting with some of the nation’s leading health specialists, this year’s conference will offer tracks to help you access the specific information that you’re seeking.

At the Breast Cancer Today: Individual Treatments, Shared Experiences conference you will get the unique medical information you seek for your specific type of breast cancer, while connecting you to others in a supportive environment. Our tracks are:

  • Triple-negative: presented in partnership with Triple Negative Breast Cancer Foundation
  • Hormone receptor-positive or HER2-positive
  • Metastatic

You can choose to follow a track or attend individual sessions based on your diagnosis or concerns. Our sessions will include information about the latest in breast cancer news, treatments and care and wellness. They will be presented by renowned breast cancer experts such as Virginia Borges, MD, MMSc; Clifford A. Hudis, MD; Rita Nanda, MD and Marisa C. Weiss. Topics will range from targeted therapies, metastatic breast cancer clinical trials, managing the side effects of chemotherapy and more, plus an engaging closing plenary, Thriving! A Discussion on Living Well – Body, Mind and Soul.

Attending a conference is a great way to not only get the latest information, but to connect with others and build a community of support. We often hear how long lasting friendships were created at LBBC conferences. I encourage you to take advantage of the many ways to share your experience – there will be breaks throughout the day, a special luncheon, closing reception and meetup groups organized by shared interests.

Registration for the conference is $50 per person but if you register before September 5th you will receive our early-bird discounted rate of $40 per person. We offer a limited number of travel grants and fee waivers on a first come, first served basis. Special thanks to Triple Negative Breast Cancer Foundation’s for its support of travel grants to women diagnosed with triple-negative disease.

Visit lbbc.org/fallconference to register for the conference, apply for a fee waiver or travel grant and to learn more about our speakers and conference sessions.

I hope you can join us in Philadelphia this September!

Catherine Ormerod
VP, Programs and Partnerships, Living Beyond Breast Cancer
cormerod@lbbc.org
P.S. – Follow #LBBCconf on Facebook, Twitter and Instagram for conference updates, staff picks on where to eat in our hometown of Philadelphia, what to see and much more!


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