Posts Tagged ‘Living Beyond Breast Cancer’

Long Gone Conversation About Cancer

April 7, 2014

Jenny Burkholder 2013LBBC blogger Jenny Burkholder shares her thoughts on the novel Oz, by Nancy Eimers and how she feels it relates to her personal story and journey with breast cancer…

The last time I saw Jessica alive, we had just watched our 3 and 4 year old daughters perform in their winter concert. Our daughters, like all of the other preschool students, were adorable, and the whole audience melted when they paraded onto the stage sang songs in Spanish. At the time, we were both bald, clearly cancer patients. At that point, I was Stage II and done with chemo and treatment; she was Stage IV and dying. As we walked out into the winter cold, we talked about cancer. At one point she said to me, “If licking the sidewalk would cure me of cancer, I would do it.”

In her 2011 book, Oz, Nancy Eimers, one of my former poetry teachers, imagines a conversation in a parking lot with her friend and colleague, Julie. The poem titled, “Long Gone Conversation about Cancer” is –for Julie. Julie died in 2008 after a 16-year battle with non-Hodgkin’s lymphoma.

In the first two stanzas, Eimers writes, “The certain dark of a parking lot/not going anywhere: yeah we have to go/and maybe there’s even/ a future awaiting us like two tin cans/on the ends of a string,/maybe we’re both worried soon there won’t be anything/rippling in the string/but we stay a little while.” The image of these two women, lingering in a dark parking lot, a parking lot that will exist after both have driven away, after one has died, is beautiful and heartbreaking. (more…)

Sharing My Experience With DCIS Helped Me Uncover My True Strength

April 2, 2014

Lori KolstadLBBC would like to welcome Lori who is sharing her breast cancer journey with us today. If you or anyone you know has been recently diagnosed with any stage of breast cancer please visit for more information about our Newly Diagnosed publications.

 In an instant, life’s journey took me to an unexpected path.  A routine mammogram changed everything.  On May 9, 2013, Mother’s Day weekend, I was diagnosed with ductal carcinoma in situ (DCIS), often considered the earliest form of breast cancer, in my left breast. It was not a palpable tumor that I could feel with self-exam.  After hearing the biopsy results, I was terrified and in shock.  Breast cancer is not in my family history and I live a healthy lifestyle. I cook balanced meals, grow many of my own vegetables and shop the farmers market.  For the past 25 years, I’ve done cardio and aerobic exercise four times a week.

For five fearful days, I didn’t know how serious it was or what my treatment would involve. When things are uncertain, the mind often finds a way to gravitate to the worst-case scenario. When I met with a breast surgeon, the first thing he said to me was, “You will be okay. You caught this early, this is treatable, and you have options.”   Hearing his words snapped me out of my negative thoughts. I could see a future, I would be okay and I could do what I needed to do.  (more…)


March 21, 2014

Annual-Conference-for-Women-BannerHaverford, PA., Friday, March 14, 2014– Philadelphia-based nonprofit organization Living Beyond Breast Cancer (LBBC) has opened registration for its 8th annual conference for women living with metastatic breast cancer.  The event, Enhancing Your Health and Quality of Life, takes place Saturday, April 26 – Sunday April 27, 2014 at the Philadelphia Marriott West in West Conshohocken, Penn.

Breast cancer is considered metastatic (stage IV) when it spreads from the breast to another part of the body such as the lungs, bones, liver or brain.  There are approximately 152,000 women in the United States currently living with metastatic breast cancer and estimates indicate that advances in treatment and care will push that number to 164,000 by the year 2015.(1)  (more…)

Let’s Be Frank…

March 13, 2014

RondaWalker-27Regular LBBC blogger Ronda Walker Weaver is back, and with a topic not many are willing to discuss so frankly…sex. Read what she has to say about this three letter word and her journey with breast cancer…

Sex – the sometimes scary and painful 3 letter word for many of us cancer survivors. I went through surgeries, chemotherapy, radiation, and all of the horrible side-effects associated with these procedures. Nine months of struggling to stay alive, and now a year post chemo, I am just beginning to recognize myself. Sadly, hormones that may benefit our sex drive certainly affect our cancers (love those aromatase inhibitors), in turn affecting our bodies and affecting our libido. The research I’ve read says that about 70% of women who have had breast cancer treatments have some sort of sexual dysfunction, as opposed to 40% of women without breast cancer. Is there sex after cancer? Once intercourse was exciting, exhilarating, yet now I have a “sexual disorder/problem.” And I didn’t bring this upon myself – ahhh cancer, the gift that keeps on giving!

I have an incredibly loving patient husband who has been an amazing caregiver. And he’s waiting for me to give him the “come-here” eye. Most of the time he’s patient, sometimes he’s frustrated. I try to explain to him that my lack of sex drive is complicated. It’s not about him – really, it’s about me – emotionally and physically. But I’m tired of this entire process being about me!

I’m just beginning to be able to look at my body in the mirror and be OK with my reflection. Lopsided breasts, incisions, discolored skin, weight gain, hair loss, gray circles under my eyes – I’m alive, but there certainly have been sacrifices. Sexuality and femininity are both terms I’m having to redefine – and this has had an impact on our intimacy. (more…)

A Breathtaking Coincidence

March 12, 2014

Tiff SmilingA few weeks ago we introduced Tiffany Mannino who is 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. Surprisingly, the collection of letters began with the one you will read below, two months before Tiffany would learn that she had breast cancer… 

October 18, 2009

Dear Lola,

As you already know, I absolutely love inspirational quotes. I find them to be daily reminders of what is truly important in life, especially when we are caught up in the noise and busyness of our daily routine. One of my favorite quotes is “Life is not measured by the number of breaths we take, but the moments that take our breath away.”

Well, today I experienced a moment that took my breath away, and it came at a most unusual place…the hair salon!  I wouldn’t say this moment took my breath away in a spectacular way like seeing the sunset on the ocean.  No, this was quite different. It was more of a brief pause in the beating of my heart and a moment of quiet reflection.

As my girlfriend was cutting my hair, the receptionist came up to us and said that a client unexpectedly showed up without an appointment and wanted to briefly speak with her.  I could tell that Amina was frustrated and explained to the receptionist that she was too busy to stop at that moment. Suddenly, a woman appeared from across the room and weakly called out Amina’s name saying, “Do you remember me?  I just have a really quick question for you.” Amina slowly walked over to her, and with trepidation the woman lifted off her hat only to reveal an almost bald head that had the slightest bit of blonde peach fuzz growing all around it.  The woman choked up and with tears in her eyes whispered to Amina that her hair was starting to grow back, and she just didn’t know what to do with it. (more…)

Poetry By Judy Koza

February 11, 2014


LBBC’s Writing the Journey is a 6-part workshop series lead by instructor Alysa Cummings designed to help you express and document your thoughts and feelings about your journey with breast cancer. Whether you are newly diagnosed, have recently completed treatment, are years beyond treatment, or are living with metastatic breast cancer, this writing series offers you a safe and creative outlet for processing and coping with your experience. No previous writing experience is necessary! Just ask Judy Koza, a former Writing the Journey participant who has been kind enough to share three of her poems with us today…

Cancer Scripts

I write as I speak, with reservedness
dealing with cancer with utmost control
Seeing the cancer world only through you
And him and her and everyone but me
I have over, or maybe under thought
All things cancer, to the point of blocking
Hiding, pushing, banishing it from me
I have willed it away, oh such restraint
To disconnect the beast from my body
And my everyday mind, not wanting to,
Not daring to connect with the “why me”
What lies on the other side of my fear
Do I peek over the wall to learn, or
Am I destined to recoil forever?


Beautifully Broken: Letters From a Girl/Woman/Human in Progress

January 29, 2014

IMG_20131207_184541LBBC would like to welcome our newest blogger Tiffany Mannino! While Tiffany has had a long-standing relationship with LBBC this is her first (of many) posts for the LBBC blog. Her entries are a bit different in that she is sharing with us personal journal entries written in letter format she penned to her unborn daughter while traveling through her breast cancer journey. This letter is an excerpt from her collection of letters which she titled Beautifully Broken: Letters From a Girl/Woman/Human in Progress in which Tiffany 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. 

November 10, 2013

Dear Lola,

Well, I cannot believe it, but it has been almost five years since I started writing to you.  It began with an insomniac moment and an incredible urge to write down all of the thoughts that were exploding in my head. It started after hearing the devastating news that the adoption I had been waiting on for over 18 months was going to fall through.  This adoption news had come on the heels of a broken engagement the previous year.   (more…)

Writing The Journey Spring Series Is Here!

January 28, 2014

Cummings-Alysa_mediumWriting can be healing. That’s the big idea behind this spring’s six part Writing the Journey series to be held at the Cherry Hill (NJ) Public Library beginning March 11th and registration is now open! The group will be facilitated by Alysa Cummings, breast cancer survivor and author of Greetings from CancerLand which can be purchased on Amazon.


Here she shares an excerpt from her book:


Magical Thinking


I was thinking as small children think, as if my thoughts or wishes had the power to reverse the narrative, change the outcome.
-Joan Didion, The Year of Magical Thinking

If you’re a cancer survivor like me, you just might be as guilty of it as I once was.

Guilty of magical thinking, that is.

I remember the first time it happened to me; I had been in CancerLand for a few weeks. The initial shock of the words I’m sorry, you have cancer had started wearing off, but ever so slightly. (Trust me on that one).

Slowly but surely I was taking baby steps toward my post-diagnosis “new normal.” Case in point: I could actually carry on a civil conversation with someone without crying my eyes out. This was no small feat. And let the record show that I was eating and sleeping normally again, showing up for work every morning and paying my bills on time. All things considered, we’re talking fairly high-functional here! At least, that was my goal. (more…)

“Coming Out” with Cancer – Breaking It To Your Friends

January 8, 2014

Screen Shot 2014-01-07 at 6 29 42 PMLBBC blogger Nikki Black was diagnosed last year with breast cancer at the age of 23. Here she discusses how she handled revealing her diagnosis to those close to her, and what she learned while doing so.

When I received the phone call from my doctor, I knew immediately she was about to give me the Bad News. Her long sigh and tight voice over the phone told me long before her actual words that I had tested positive for breast cancer.

“I’m sorry,” she said, “It’s hard, when the patient is so young.” Tell me about it.

As a young woman dealing with breast cancer, it can be difficult to break the news to your friends for a number of reasons – not the least of which is reliving the shock and sadness that comes with that diagnosis with every new phone call you make. I worried about how people would react and who was appropriate to tell. I worried that people would be upset with me for not telling them sooner, or telling them after I had told another person. I added anxiety on top of anxiety on top of that diagnosis during a time when I should have been focused on accepting the news myself.

So, if I can, I’d like to spare anyone this anxiety and share what I’ve personally learned about “coming out” with cancer to your friends.


I Was Not Alone: How LBBC Helped Me Live Beyond Breast Cancer

December 2, 2013

Last week, Amy Lessack wrote about why she’s giving back to LBBC on #GivingTuesday. Today, we are proud to present this blog post by Debby Freedman, an LBBC volunteer who credits our organization with helpling her through her diagnosis, treatment and beyond. With one day left until the start of our #GivingTuesday activities, we hope Debby’s story will inspire you to support LBBC tomorrow and help us reach more women like her.

I was diagnosed with breast cancer about 5 years ago and I had surgery, chemotherapy and radiation.

I first connected with LBBC when I was in chemo.  I was still fairly newly diagnosed and I was really scared.  I needed someone to talk to who could understand what I was going through and who wouldn’t be alarmed by my fear. I called LBBC’s Breast Cancer Helpline and spoke to a fellow survivor.  The call was a huge relief to me. The LBBC Helpline volunteer reassured me and helped me feel that I was not alone in facing the fear that comes with cancer. (more…)


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