Posts Tagged ‘Living Beyond Breast Cancer’

“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.

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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.   (more…)

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. (more…)

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. (more…)

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. (more…)

I loved everything about Yoga on the Steps: Kansas City

July 9, 2014

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Wendy Hazlett, LBBC friend and long-term Silpada Field Development Director of the Northeast Region shares her breast cancer story and why she’s looking forward to LBBC’s Yoga on the Steps: Kansas City for the 2nd year in a row! 

 

I was diagnosed with breast cancer in June 2011.  It was through a routine mammogram and I still thank God each day for the expertise of my radiologist!  I never thought “why me?”, but instead jumped right in to “beat this”.  We had been thoughtfully watching a lump on my left breast throughout the years, so when the mammogram came back saying that I had cancer in my right breast and my surgeon recommended double mastectomies, I followed the recommendation and had a successful surgery in August 2011.

 

I had my first reconstruction surgery that December – which my body rejected.  This caused me to undergo 3 additional surgeries before being able to close this chapter in my life in December 2012.

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Check Out Our Twitter Chat, #LBBCchat: Coping With the Financial Impact of Breast Cancer

June 25, 2014

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UPDATE, July 8, 2014: A transcript of our financial concerns Twitter chat is now available. Read the tweet conversation on lbbc.org.

If you read and related to our June 18th blog post discussing concerns about the financial impact of a breast cancer diagnosis, our Twitter chat,  Coping With the Financial Impact of Breast Cancer, is for you. Join us tonight, June 25, at 8 p.m. (ET) using the hashtag  #LBBCchat for an hour-long tweet chat with a panel of breast cancer, finance and legal experts to get answers to your questions and learn about

  • what insurance will cover, and how to navigate both hidden and visible costs of breast cancer treatment.
  • how breast cancer can impact your personal finances.
  • workplace accommodations and disability rights, and what you can do if you lose your job.
  • the resources available to help you ease the financial burden of medical bills.

Are you new to Twitter chats? Learn best practices for successfully participating in tweet chats.

Additional Resources

We offer many resources on financial concerns and breast cancer, including a guide, online content, our ask-the-expert series and podcasts and presentations of past programs.

Download or order print copies of our updated Guide to Understanding Financial Concerns.

Read our Financial Concerns content in the “Beyond the Basics” section of lbbc.org.

Learn about or apply for our Cis B. Golder Quality of Life Grant.

Check out the following from our Ask the Expert series:

Listen to and read these podcasts and presentations:

Discover additional information from these recommended resource listings:

I’ve Reached a Milestone…My Halfway Mark

June 20, 2014

Tiff Smiling Tiffany Mannino is back sharing another ‘Dear Lola’ journal entry with us; letters penned to her future daughter about her breast cancer experience. This time she shares her thoughts and feelings about being halfway through her chemotherapy treatment…

 

April 19, 2010

Dear Lola,

I know it has been quite a long time since I’ve written. Although I have thought about you every single day, the truth is, I have not wanted to share with you how I’ve been feeling. I always envisioned that what I would write to you would inspire and uplift you as I am a firm believer in finding the positive in every situation.  Truthfully, I’m having an incredibly difficult time finding the light in the midst of darkness at the moment as I’m going through such a challenging time in my life.

The last time I wrote to you was on the eve of my first chemo treatment. I was filled with great anxiety and anticipation. Well, now I should be celebrating because I’ve reached a milestone…my halfway mark. It has been eight weeks, and I have completed four of my eight treatments. Although I’m thrilled to be halfway done, I’ll admit, that doesn’t replace the dread I feel that I still have four more! I’m not going to sugarcoat it, chemo totally sucks!

Going through chemo for me has hands-down been the most difficult part of the breast cancer journey and truthfully, the hardest thing I thing I’ve ever faced. Each treatment has brought on a different set of challenges to face.

The first treatment made me violently ill to the point I was practically vomiting up my intestines. I remember lying in bed at 3 o’clock in the morning writhing and crying out to my mom, begging her to make it stop. In between tears, I pleaded with God to take away my pain. At that moment, my mother wrapped her entire body around me and with tears in her eyes, just held me like a baby. It is amazing to me as a 36 year old adult, how much I wanted and needed my mother as if I were a little child once again. In that moment, I realized that we never, ever outgrow our mothers and the need for their love and care. (more…)

Major Plumbing Problems

June 5, 2014

randi rentzRegular LBBC guest blogger Randi Rentz is back! Today she’s tackling a topic we as a society consider rather taboo but while going through her treatment she found it became quite necessary to address the issue with her oncologist…

What ever happened to the old saying “in by 9, out by 5”? For me, after my cancer surgery and treatment it was “in at 9 out IN out IN out IN by 5” if I was lucky. There is nothing – absolutely nothing like being constipated after surgical procedures and treatment. Not only did I experience being “stopped-up” … as in non-functioning, total shut down, zippo, but one of the unpleasant side effects of my Taxotere treatment was colitis, an inflammatory process in the bowels resulting in diarrhea-diarrhea-diarrhea. Oy vey is mere. My plumbing problems were ever wretched. (more…)

Be Your Own Advocate: Don’t Be Afraid To Ask For A Second Opinion

May 25, 2014

Tonya Head ShotToday guest blogger, Tonya Priestley shares her story about following her intuition after being reassured nothing was wrong following an abnormal mammogram. She insisted on a second opinion which ultimately lead to her being diagnosed with ER/PR-positive ductal carcinoma in situ (DCIS)…

On my 38th birthday, I gifted myself a mammogram. I had no signs or symptoms, no family history, and no doctor’s referral, but decided to move forward with a screening after seeing a close friend of mine struggle with very aggressive breast cancer. After the mammogram and a needle biopsy identified some calcifications, I was told that I didn’t need to worry because I did not have breast cancer, rather I just had some atypical cells.

The words ‘atypical cells’ didn’t settle well with me. I requested a copy of the results and called a nurse for an opinion. The nurse told me that I needed to see a surgeon.

The surgeon conducted a lumpectomy, which was a short surgery but a painful recovery process – physically and emotionally. I woke up cold and was given pain medication, a kind of narcotic, and immediately threw up. Then I received the news from the surgeon: the lumpectomy confirmed that I in fact did have breast cancer. I was diagnosed with ER/PR-positive ductal carcinoma in situ (DCIS). (more…)


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