Archive for the ‘fear’ Category

Randi Rentz: What to Say (and What Not to Say) when Your Friend is Diagnosed

October 25, 2012

During Breast Cancer Awareness Month, we are asked to support and honor women from all over who are living with the disease. Whether it’s wearing your pink ribbon, donating to Living Beyond Breast Cancer, or simply talking with a friend or loved one who has been diagnosed, you are doing your part. Today, the LBBC Blog welcomes back avid writer, Randi Rentz, as she discusses the ups and downs of comforting a newly diagnosed woman.

A friend called recently. She had just learned that another friend of ours was diagnosed with breast cancer. She could not stop crying after she received the news and had not yet called our friend to offer her…what? What is the right thing to say? What, as a good friend, do you do? My friend called me, thinking I had all the correct answers. She wanted to know if she should stop by our friend’s house (in between sobs). She also wanted to know if she should leave her alone. Seriously. What to say? What to do?

As a survivor, I was touched by the many people who reached out to me, but sometimes, I really had to wonder, what people were thinking. I should have written down some of the things people said to me. Wishful thinking. Although people had good intentions during my diagnosis, I really yearned for friends and acquaintances to “Think Pink” before speaking the “Pink Language.” Let’s face it, my friends were well-meaning, but I was irked.

As we all know, pink is the universal color for breast cancer. It is everywhere. I’ve always loved the color pink, all tones, tints and tinges of it. What can I say? I’m a girlie-girl who loves any shade of pink; especially hot pink. It’s way bolder than blush-and not the least bit bashful. Although I LOVE, LOVE, LOVE, the color pink, please don’t tell me pink is my color; especially the same day of my diagnosis. Yup.

Empathy is wonderful, but please don’t say, “You MUST live!” (Duh!!!) or “Are you going to die?” (Geez!!!) And, PU-LEAZZZE don’t say, “My aunt, friend and/or grandmother died of breast cancer.” Ugh!

(I digress…sorry) To be honest, I didn’t know what I wanted other than to inch into my bedroom and wait for my doctor to call me with the next bit of medical information. I was completely self-centered (totally deserved.) I did not think about whether or not I wanted my friends to call, so in hindsight, I can see what a predicament the situation put them in.

So now I know you are thinking uh oh. What did Randi say to her friend who called her or what if I call a sick friend and say the wrong thing? What if I give them words of support and they want to say something snarky to me?  Or, what if I bawl my eyes out when I hear her voice?

I can only tell you based on my own journey into “Cancerville” what I think might be just the right thing to do. Here is my short list of do’s and don’ts:

  • DON’T make remarks about your friend’s lifestyle. Keep your comments such as “How can you not know that by smoking you were putting yourself at risk?” to yourself. People need to come to their own conclusions about themselves.
  • DO Listen. You are there to give your love and support.
  • DON’T ask your friend if you can bring a meal or help somehow.
  • DO say I’m going to take your carpool days. What time do you pick up the kids from school? Or, I am bringing over a meal for Sunday. What time works for you? Whether it’s a carpool, a doctor’s appointment, a meal or an errand, make yourself available, and be specific about what and/or how you will be helping your friend. Just DO it! My dearest friend made a meal chart, sent it out to all my friends via email and had everybody sign up for a meal (breakfast, lunch or dinner) during my entire treatment. She really earned her golden angel wings for taking charge!
  • DON’T say, “You are going to be fine!”  That was the one-liner that really irritated me. In fact, any reference to being fine can magnify the situation. Do you know for sure that your friend will be fine?
  • DO say, “I’ll be here to support you during and after your treatment. Enough said.
  • DON’T call your friend and unveil the story of how you heard the cancer news, where you were when you found out, how you were told and how upset you are. Also, please don’t say, “Why didn’t you call me right away?” Please remember, this isn’t about you and your feelings, it is about how much you want to support your friend. All of the other details can come later. As she processes her experience I practically guarantee that she will want to tell you anyway.
  • DO call your friend and offer your support and encouragement. You can open the conversation like this: “Oh Dee! I just heard that you are sick. How are you doing?”  It’s really not so horrible to cry, as long as you don’t make the conversation about you.

When I was diagnosed with cancer, I believe people saw me differently. Deep down I knew that I was still me, and I wanted to be treated the same as ALWAYS. In the back of my mind, I couldn’t believe I had a diagnosis of DCIS. Breast Cancer? ME? Being sick is so overwhelming, that to have friends come along and lift you out of many overshadowing thoughts, even for 30 minutes, is TRULY wonderful. It made me feel almost normal. Doesn’t normal feel so good?

As I said, I am not an expert. I know only how I felt during my journey into ”The Pink Bubble.” I think as a whole, the dos and don’ts are great guiding principles to stick to. As a friend, your role is to support, help and send love. That pretty much sums it up.

To learn more about Randi you can peruse her blog or read excepts from her book, Why Buy a Wig…When You Can Buy Diamonds!, when you visit her website.

Josh Fernandez: Debra Jarvis and Finding Meaning

October 2, 2012

Rev. Debra Jarvis, Mdiv, says cancer is about finding meaning, trusting your gut, learning to take risks, developing your curiosity and staying awake. To highlight these points, Jarvis utilized a handful of stories throughout her closing speech at the Living Beyond Breast Cancer’s Annual Fall Conference on Saturday, Sept. 29. Here on the Blog, LBBC’s Web Content Coordinator, Josh Fernandez,  shares his experience hearing Debra speak at his first ever national LBBC conference.

Her first anecdote directly related to the title of her 2007 book, It’s Not About the Hair. After learning she had breast cancer in 2005, Debra and her husband called family and friends to give them the news. The oft response Debra heard was, “Oh my God, are you going to lose your hair?”

“After about the third phone call, I slammed down the phone and said to my husband, ‘I’m telling you, I’m going to write a book and I’m going to call it ‘It’s Not About the Hair,’’” Debra told the conference audience.

She later learned from friends that what they really wanted to ask was, “Are you going to lose your life?” For her friends and family, the hair question was a way to measure how bad the cancer was.

After explaining the book’s origins, Debra transitioned into her response to the question presented in the book: “If cancer is not about the hair, then what is it about?”

“I think any kind of really challenging experience is about finding meaning,” Debra said in her speech. “The real challenge is that nobody can tell us what our experience means.”

She said it’s up to the individual to discover this meaning, and that meanings are dynamic and change over time. Debra then discussed the importance of developing an attitude of curiosity rather than dread.

“We’ve all seen people facing challenges, and it takes a lot of energy…what if instead of contracting, we expand, move forward with our hands out and our palms up and have an attitude of curiosity, saying, “I wonder what this experience is going to be like?” she said. “When we approach any challenge with curiosity instead of dread, it suddenly becomes interesting and way less intimidating.”

LBBC’S Web Content Coordinator, Josh Fernandez

Debra said this attitude helps individuals  stay awake to possibilities and experience growth and change. She said being awake means “knowing that being alive is a gift, and that this gift is finite; it will end…To me, being awake is our task to love and leave the planet a better place in any way we can.”

Debra also said that it’s crucial not to “go back to sleep”. She cited an anecdote about a woman she met five years ago while working at the Seattle Cancer Care Alliance where she also received treatment. The woman was undergoing chemotherapy for cancer, and told Debra that she wanted to see her grandchild grow, start a garden, stop being judgmental and appreciate life in general.

Two years after the initial conversation, Debra ran into the woman in front of a chase case of a supermarket. Debra asked the woman about her grandchild, her garden and life in general, and the woman’s responses – among them being that her grandchild was a “nightmare” and that she didn’t garden because she didn’t want to ruin her manicure – indicated she hadn’t followed through on the promises she made to herself when she was receiving treatment. She was the same person she was before her cancer diagnosis; she had “gone back to sleep.”

When she finished telling the story, Debra said staying awake was important for continued growth.

“We don’t need to have breast cancer for spiritual and personal growth…but if we are touched by cancer, let’s use it. Let’s find meaning, let’s take risks and trust our gut, and be curious and open and not go back to sleep,” she concluded.

Check out Living Beyond Breast Cancer’s website to read Debra’s Ask-the-Expert questions. Also, feel free to peruse the Living Beyond Breast Cancer’s blog to read recent blog posts from Debra and stop over at Amazon.com to purchase her book, It’s Not About the Hair: And Other Certainties of Life & Cancer.

2012 Fall Conference Speaker, Rev. Debra Jarvis: Speaks (part one)

September 19, 2012

On Saturday, September 29th 2012, Living Beyond Breast Cancer will host the Annual Fall Conference at the Loews Philadelphia Hotel. Women from all over the country will join us for presentations on a plethora of topics, ranging  on tops from “Long Term Survivorship” and “Newly Diagnosed,” to “Care for the Caregiver” and “Navigating Health Insurance Claims.”  Today, the LBBC Blog is happy to introduce Reverend Debra Jarvis, our closing plenary speaker at this year’s event, as she shares the beautiful story of her “Last Supper.”

It was four days before my first chemotherapy and the impending taste bud destruction. For my “Last Supper” I chose Lola, a modern Greek restaurant in Seattle. That means you can get grilled octopus and dolmades, but you can also get high-tech martinis and wild Pacific prawns.

Our server was young and beautiful and her dark hair was rinsed cherry red. She cheerily explained the specials and asked if we had any questions. Having just had a mastectomy, all I could think was, “Have you had your mammogram?”

Instead I blurted out, “Of all the restaurants in Seattle, this is the one I chose for my last meal before chemo.”

She blinked for a few moments and then smiled and said, “I’m so glad you chose to come here.”

I chose goat; cider braised with honeycrisp apples, roasted shallots, and celery salad. It was divine and I say that as an ordained minister and experienced foodie.

Our awareness that this was our last dinner out before six months of unknown chemo side-effects made every bite, sip, scent and sound sublime.

“This is the best dinner I’ve ever eaten,” I said holding hands across the table with Wes. He could only nod since his mouth was filled with chickpea fries, but I saw his eyes well up.

Our server came back to ask if we wanted dessert. “Just the check,” Wes answered.

She gave us a big smile and said, “You’re welcome to pay next time you come in. This one is on the house.”
We didn’t leave for another twenty minutes because we couldn’t stop crying.
On my two year end-of-chemo anniversary I said to Wes, “Let’s go to Lola!”
I made the reservations and then, after a moment’s hesitation, told the hostess our experience from two years before. “I know it’s crazy,” I said. “But is she still there? She had cherry red hair.”

“Hold on.” I was on hold for a few moments and then someone picked up.

“I remember you,” the voice said.

It was her—Sabrina our server who is now a manager! We were coming in Friday night the only night she was there. Coincidence? I think not!

We were a party of six and Sabrina bought our appetizers and desserts. I gave her a copy of It’s Not About the Hair. Bathed in gratitude, we ate, we drank, we laughed. The goat was as delicious as I remembered.

Before we left I hugged Sabrina and said, “You just don’t know how many times I’ve told that story of my Last Supper.”

“I’ve told the story too!” she said. “I understand about the eating because my mom had chemo.”

I was stunned. “Gosh,” I said. “I didn’t realize that. How is your mom doing?”

She hesitated a moment. “She died—when I was little. But I still remember.”

I gave her another longer hug. Clearly, in the few years they were together, her mother had taught her about love.

No wonder that night had felt like the Last Supper:

Do this in remembrance of me.

And she had.

Debra Jarvis, “the irreverent reverend with something to say,” is an ordained minister in the United Church of Christ. She is the author of several books, most recently It’s Not About the Hair: And Other Certainties of Life & Cancer (Sasquatch Books, 2007) which was finalist for the 2009 Washington State Book Awards.  For more information on her work or her writing, visit her website. Visit the LBBC Events page for further registration information on the 2012 Annual Fall Conference.

Susan Navissi: Feelings from Afar

September 1, 2012

Living Beyond Breast Cancer hosts 3 national conferences14 national teleconferences and offers a toll-free Survivor’s Helpline that we know many women across the United States utilize. However, women all over the world have been affected my breast cancer and we are honored to know that are services are reaching to other parts of the world. For this month’s first installment of “Living Beyond Breast Cancer’s Writer’s Corner,” we welcome Susan Navissi, a strong survivor from Berlin, Germany.

Diving

breathe breathe dear, don’t be scared
– concentrate on your work, survive
and dive dive – through these dark times
where fear is your companion
and love has to fight so hard to come through

and then, when you come up after a dive
look around and see -clear now
what you need , whom you want, where you want to be
and why this life shall be lived fully

uma soona

September 2011

* * * * * * * * * * *

Agreements

this precious beautiful cancer sister wrote:

it may sound strange but what I did was asking it to go away
suggesting it may be a star in the dark blue sky
so I will not forget, for I do like to watch the stars.

dearest sister, no it does not seem strange
same did I – drowned mine in the little lake
asking it to never ever come back
for I do not need it, but do like to watch the water.

what else do we do while healing?
crying rivers, wearing our wellingtons to jump in the puddles
convulsing in pain, reading the news who shall be bombed next
hugging our loved ones, drinking each good word, look and touch.

whether healthy or ill
listening to lullabies of the axis of evil
may make you think
about human kind

November 2011

antiope

* * * * * * * * * * *

(*Note: As Susan’s native language is German, we felt it only appropriate to include some of her work in her own “voice.*)

Rosennacht

Die erste Nacht war voller Rosenduft

Küsse regneten auf meinen Körper

weich und zärtlich

von den schönsten Lippen

Ich werde arm sein, erklärte ich,

keine Bücher mehr und keine Schuhe!

dann werden wir barfuß in die Bibliothek gehen,

sagtest du- und ich habe dir geglaubt

Immer wollte mein Körper neben deinem liegen.

Blind war ich und taub

Vergewaltigende, Furie, Irre, Schamlose

und zärtlich, sorgend und liebevoll.

Nach allem, was  mein Körper kennen lernte,

Holocaust, Fukushima und Mansonism

bin ich trotzdem noch erstaunt

über das

was war

damals,

in der Nacht als alles nach Rosen roch…

du, ich, die Nacht und die Zukunft, die zwischen uns lag.

Kali

* * * * * * * * * * *

“I send my best wishes and love to all my sisters out there, being all brave and enduring this.”

Born in Berlin, Germany, Susan is a mother of a 24 year old son and was diagnosed with a triple negative tumor involving the lymph nodes in  june 2011 at age 44. In the middle of political upheaval, the responsibility of success  at work phase and in love after a bad time; it just did not fit. Fortunately, Susan had access to her feelings of fear and terror and expressed them in poems and paintings. Susan has made is through chemo, surgery and rehab and lives every day saying “I am healthy and will become very old.” Living Beyond Breast Cancer will be hosting another Fall Writing the Journey Series where survivors can creatively express and document their own feelings starting October 9th.

Eve Wallinga: “It’s beautiful. It’s me.”

August 6, 2012

On Tuesday, August 21, 2012, Living Beyond Breast Cancer will host a free teleconference, Breast Reconstruction: Considering Your Options, featuring Frederick Duffy, Jr, MD, FACS. LBBC is lucky to have a wonderful network of women willing to share their stories on these more personal, yet under represented matters in the breast cancer community. Join the LBBC Blog in welcoming Eve Wallinga, as she shares why she chose reconstruction.

When I learned I’d need a mastectomy, I never considered not having reconstruction. I  didn’t even care if I was symmetrical, as long as I didn’t wake up with a blank chest.

Maybe I’m not as strong as other women, not as sure of who I am, as confident of my femininity. Or maybe I’m stronger. Strong enough to endure more surgery, pain, and recuperation to restore my breast. Strong enough to draw the line at losing that part of myself to this relentless disease. I needed to know I’d done all I could to fight and win.

I was fortunate to be referred to a plastic surgeon. Not all women are even told about reconstruction. But I was offered only two techniques, because those were the ones the plastic surgeons in my area performed.

I didn’t like the idea of abdominal muscle being cut and my tissue being tunneled up through my body while it stayed attached down below (called a “pedicled TRAM“). So I opted for an implant, which would be placed at the time of mastectomy and gradually filled over several months. Didn’t sound fun, but at least I wouldn’t wake up with nothing.

An hour before surgery, fate intervened with a twist. Seemed my cancer was a rare type. Maybe I’d need radiation after all. Since radiation and implants don’t mix, I’d have to delay reconstruction and face my nightmare scenario of waking up without a breast.

When I first took off that wide white bandage, I squinted my eyes to blur the sight. I turned away from the mirror when I dressed, closed my right eye to block any peripheral view of the empty space, wore a bikini top to bathe, a padded bra during the day. For sleeping, I cut out the left side of an old padded bra, so my left breast would be unfettered, but my right side covered.

But now, I can honestly say the delay was the best thing that happened. I had time to research options and realized I wasn’t limited to local reconstruction techniques. I saw online photos where I could hardly tell which breast was the original and which was the reproduction, and women whose bodies looked better in the “after” pictures than the “before.” I took an informed leap of faith and headed to New Orleans for stacked DIEP flap reconstruction.

Living without a breast for a few months made me better appreciate waking up with my new one. It’s beautiful. It’s me. Like my old breast was magically resurrected. I don’t feel like I ever had a mastectomy.

Despite your desire to get the cancer out of your body quickly, in most cases you can and should take the time to do homework. Depending on your circumstances, you can have immediate reconstruction or delayed, even by years. There are now skin-sparing mastectomies, even nipple-sparing, where basically the cancerous “stuffing” is removed and replaced with an implant or your own tissue. More fat sources are available for flap reconstruction, including gluteal flaps (your derriere), which I chose to reconstruct my other breast, prophylactically, several years after the first.

Your choice of surgeon is as important as your choice of reconstruction technique. Find a specialist with experience specific to what you want, and if you want a flap, don’t let the doctor dissuade you by saying you don’t have enough fat. Maybe that surgeon wants you to go with the only procedure they know, or they’re not experienced enough with flaps to make it work. Ask how many procedures they’ve done, what their success rate is, look at their before and after pictures, and talk to a former patient or two.

You can check out sites like www.breastcancer.org where there are discussion boards about all different kinds of reconstruction, and you’re sure to find women in the same situation as yours, as well as those further down the road, happy to share what they’ve learned. If you decide on reconstruction, there are many possibilities, though unfortunately none of the techniques are easy. But being a cancer survivor, you’ve already endured worse. I’ve made it a personal crusade to try to help empower women with knowledge about their choices. Whatever you choose, best of luck!

Eve Wallinga is a 6-year breast cancer survivor who lives in St. Cloud, MN with her husband and Yorkshire Terrier. Her two children have flown the nest. She is a co-founder of the Breastoration Foundation. Click here to read her blog, “The Breast of the Story.” Also, be sure to check out the Living Beyond Breast Cancer Event Page where you can get more information on the upcoming August teleconference on Breast Reconstruction: Considering Your Options.

Randi Rentz: Here to Help

July 20, 2012

Regular LBBC blogger, survivor and author, Randi Rentz was recently contacted by a woman for information and support about being newly diagnosed.  At Living Beyond Breast Cancer we have volunteer survivors who provide the same service through our Survivors’ Helpline. Here on the blog, Randi shares her answers as well as her appreciation for organizations like LBBC.

 Source: winmesothelioma.blogspot.com

A newly diagnosed woman (who did not want her name mentioned) recently contacted me about my breast cancer experience. Like most newly diagnosed women, she had many questions. Although we stayed on the phone for two hours, I wanted to give you a short Q & A regarding self-exams and my go to organization, Living Beyond Breast Cancer.

Q. Tell me a little about yourself and your lifestyle.

A. My name is Randi Rentz, I am 46, and single. I work for a public school outside Philadelphia, where I teach children, K-5 on the Autism Spectrum; primarily children diagnosed with Aspergers Syndrome. In addition, I have my own consulting company, Rentz Consulting, where I work with people of all ages on the spectrum. I have also just completed a book called “Why Buy a Wig…When You Can Buy Diamonds,” which is a memoir about my breast cancer experience. I am hopeful for a Fall 2013 publication. You can find more information about my book at www.randirentz.com.

Q. Describe how you found your cancer, were you on ‘watch’ or did it sneak up on you?

A. I found my lump doing a self exam in the attic of my father’s house while packing up his mementos after he passed away. I had sharp pains shooting below my left breast into my rib cage. I was only 42 and had no immediate family history or a first degree relative with the disease. I credit my life being saved to groups like Living Beyond Breast Cancer, for creating so much awareness and education about self-exams. When I told my doctors about the lump many of them told me not to worry because it was probably a cyst since I’ve had a few cysts before. Also, I was relatively young and had no family history. I think it is so important, for young women especially, to do breast self exams. But, my doctor I first showed the lump to insisted that it wasn’t anything to worry about and to go home after she looked at my mammogram. I insisted in getting an ultrasound, which looked bad, and then I got a needle biopsy the following week.

Q. Following diagnosis, what helped you cope the most, and gave you strength?

A. My friends (they came to treatments and took care of me by cooking for me, doing my laundry and just keeping me company), and co-workers (they were such cheerleaders and volunteered to sleep over my place many evenings)! Also, my doctors were incredibly supportive (always reassuring me that I was doing a great job with treatment). And, therapy (I saw an amazing therapist who specializes in treating cancer patients and their families). Speaking to other survivors was incredibly helpful: that is why I wrote my book…to be there for other women.

Q. How has breast cancer changed your outlook on life?

A. I try to make myself worry less about the little things and feel very appreciative of life. We recently had a talent show at school where I cried when I saw a few girls dancing on the stage….absolute tears of joy. I could not believe how lucky I was to be watching these girls leap through the air. They looked so beautiful in their pink tutus, black tights and pink ribbons in their hair. I realized that my life has gone on, but there is always an homage to how lucky I am to be living, an appreciation that pink ribbons have such a complex meaning to me.

Q. What advice would you give to someone who is newly diagnosed with breast cancer?

A. Do your homework and get involved in your treatment options because it will make you feel so much more in control. Get a 2nd and 3rd opinion if you need to (I got 5)!

Q. How has Living Beyond Breast Cancer been helpful to you?

A. The educational programming that LBBC is doing is making me feel that the world will be a better, safer place for women diagnosed with breast cancer. In addition, their goal is to empower all women affected by breast cancer to live as long as possible with the best quality of life. And, I know that feeling the power of their organization, the power of their community, makes me feel that I am not alone in this fight. The organization continues to make me feel like I am part of a huge team in fighting this disease. Also, I really think that LBBC helps people realize how much the families are changed by breast cancer, and the ripple effect of a breast cancer diagnosis on a family. LBBC has shown me how much can be done in the fight against this disease because breast cancer often leaves us feeling so powerless. LBBC is a great example of how much can be done, and how much hope there can be in ending this terrible disease.

To learn more about Randi, peruse her blog, or read excepts from her book, Why Buy a Wig…When You Can Buy Diamonds!, you can visit her website.

Jeanette Caligiuri: Triple Negative, Triple Threat

July 2, 2012

On Tuesday, July 10th, Living Beyond Breast Cancer will host a free Community Meeting addressing the diagnosis of triple negative breast cancer.  In preparation for that event, LBBC would like to introduce Jeanette Caligiuri, co-founder of Faith & Hope Boutique and an eloquent triple negative breast cancer survivor.

I am sure we all vividly remember the day that our lives changed forever when our worst fears were confirmed; “I am so sorry…you have breast cancer.” I wish I could say I was stunned or shaken, but what I was feeling was almost relief…

Breast cancer has always been part of my life; it very hard to remember a day that we didn’t coexist. The disease has touched every female family member on my maternal side. I have childhood memories of spending Thursdays at Pennsylvania Hospital in outpatient chemo with my mom who was diagnosed in her late twenties. I often assumed that everyone’s mom was bald and unable to hug too tightly because of her latest “boo-boo.” My mother was taken too soon, barely thirty-five, her mother in her early fifties and the chain continued…to me. To some, my story is sad, but to me it’s empowering. I armed myself with knowledge and preventative care. When the enemy came knocking, I would be prepared. I had an army of three who I felt with me through every surgery, each round of chemo and numerous setbacks. I had the knowledge that I was a BRCA1 mutation carrier—the only puzzling thing about my diagnosis that I was to learn was that my breast cancer was triple negative.

“What does that mean?” I naively asked the surgeon, “Negative is good, right?” I heard myself scream with fear. “Not exactly” are not words of reassurance from your doctor as he went on to explain and rattle off statistics that I was no longer able to comprehend. My focus was on aggressive, poor prognosis, higher mortality and many more awful adjectives.

Upon returning home, I immediately hit the web and researched into the wee hours of the morning. I remember waking the next day paralyzed with fear that I would never see the youngest of my three sons’ graduate elementary school, let alone Start College. I vaguely remember time passing slowly until the following weekend arrived, when I attended my first annual Fall Conference: “News You Can Use” hosted by Living Beyond Breast Cancer. That morning, before the first keynote speaker took to the stage, I was embraced into the sisterhood that spoke to my fears and filled me with resolve. If anyone was meant to be in attendance that day, it was me, as a key focus of the conference was on triple negative breast cancer. I learned so much that day and left with renewed spirit and most importantly, hope.

Now that I am a six-year survivor, I have taken many lessons from this journey: that we don’t get to choose what happens to us in life, but we do get to decide how to use it. My experiences have given me a voice to speak to young women while volunteering for groups like Living Beyond Breast Cancer and Young Survival Coalition. I have been rewarded the gift of purpose by co-founding my survival shops, Faith & Hope Boutique. But the greatest lesson I have learned is that good things come in threes: the legacy of my Grammy, mom and myself. My three sons, who I have watched graduate from elementary and high school. That we all have a past, can live for today and tomorrow is future enough to plan for. That most importantly, a triple negative diagnosis what not my ending, but a new beginning.

For more information about Faith & Hope Boutique, a shop fully staffed by survivors who are ABC and BOC Certified and rely on their own personal post mastectomy experiences to aid in your recovery, visit their website. Also, if you’re interested in learning more about triple negative breast cancer, head over to the LBBC website to order or download the Guide to Understanding: Triple Negative Breast Cancer.

Judy Zwillenberg: Insights from an LBBC Intern – Part 1 of a 3 Part Series

June 29, 2012

The staff here at Living Beyond Breast Cancer is excited to have many new faces and strong minds in the office, with a special appreciation going out to our interns. During her stay here at the LBBC office, intern Judy Zwillenberg will share what it’s like to be a part of the team as she works on the Young Women‘s Initiative.

I began my work at LBBC when I volunteered in the spring of 2010 for my high school senior project. This summer, I am interning in the Education Department on the Young Women’s Initiative. I have worked on a number of projects, but for this blog post, I want to focus on my research on young women diagnosed with breast cancer.

The articles I read addressed two different aspects of breast cancer treatments for young women. First, they discussed the biological and medical sides of a breast cancer diagnosis. These included treatment options, recurrence, and the effects of obesity on breast cancer. Many breast cancer specialists seem to devote a lot of time to these topics, especially those which apply to a broad range of breast cancer stages, ages, and races. However, fertility after breast cancer, an area I found particularly interesting,  is an issue faced predominantly by young women and receives much less attention. In addition to the initial shock of being diagnosed with breast cancer and facing treatment, young women must also think ahead and family-plan. Many do not receive adequate guidance and do not know how long to wait after treatments to conceive (2 to 3 years), or how chemotherapy affects fertility (it may lead to premature menopause). The article made it very clear that counseling about these questions must be available to women who still want children after their treatments.

The other informative part of the articles I read was the discussion regarding planning programs and events for survivors. Many of the articles outlined effective programming as a way to address young women’s needs during and after breast cancer treatment. Treatment is not simply mastectomy versus breast conserving therapies, or chemotherapy compared to radiation. To women diagnosed with breast cancer, support groups and programs are also vital to their recovery and quality of life during and after breast cancer. In a study conducted by Komen, women of different ages and races convened in focus groups to discuss the disease. An overwhelming majority of the women wished that, at their time of diagnosis, they were given information about support groups. Also, they felt that many of the materials they received did not focus on their specific age bracket, race, or breast cancer stage, but rather on a larger and vague idea of “breast cancer.”

Although the topics of the articles varied, in my opinion, they all stressed the need for organizations such as Living Beyond Breast Cancer. LBBC is a truly unique breast cancer non-profit: it combines up-to-date medical news and educational and social programming to provide women with breast cancer with essential resources. Not only does it make information about diagnoses and treatment options available through pamphlets, events and teleconference, but it also dedicates an extensive amount of time and energy to educational programming devoted to specific groups of women. Young women, for example, can receive information specifically pertaining to them and their needs, or attend conferences focused solely on their demographic, such as C4YW: The Conference for Young Women Affected by Breast Cancer. In general, there is a dearth of programs out there which focus on specific age brackets, races, or breast cancer stages, but LBBC tries to fill in some of the gaps through their programming.

Judy is a rising sophomore at Cornell University as a Biology and Society major.You can find more information about the Young Women’s Initiative at the Living Beyond Breast Cancer website. Come back next month for another peek into Judy’s work here at LBBC.

Alysa Cummings: Greetings from CancerLand

June 19, 2012

Alysa Cummings, the facilitator for Living Beyond Breast Cancer‘s Writing Series: Writing the Journey, is featured in our second helping of this month’s LBBC‘s Writer’s Corner. This piece, “Me and my Vampire,” is excerpted from the her book, Greetings from CancerLand, now available online from Amazon and Barnes & Noble.

Me and My Vampire

I grip the envelope tightly in my hand. The words Pre-admission Testing are block printed in black ink across the front. Inside there’s a form already filled out with my name, birthday and date of surgery, along with a long list of mysterious acronyms and medical abbreviations.

Time for a little pep talk. I can’t help but think about what’s ahead for me – another major surgery with weeks of recovery. But this morning, what’s happening today will be a piece of cake by comparison. Easy as can be. No big deal. After all, I should be a total pro by now after years of practice, right? Anybody like me who has spent so much time in CancerLand knows the pre-op drill by heart and it goes like this: get your pre-admission testing done, or else no surgery…

I walk into the waiting room. There’s a machine on the wall that spits out slips of paper, (now serving number 86) just like in a bakery. I reach out ready to press down the red lever, when I read a nearby sign that proclaims, Pre-admission Testing Patients Do Not Need to Take a Number!!!

The three exclamation marks on the sign do their work well. No number for me. I slouch down in a molded plastic chair and silently think to myself, how is it possible after ten years in CancerLand that I still feel like such a stranger in a strange land?

I hear my name badly mispronounced over the loudspeaker. No one else responds, so I get up and walk into an examination room and stretch out on the table. After some sticker placement and untangling of wires, the technician finishes the EKG. In seconds it seems. Certainly in less time than it took me to walk back and forth to the Information Desk.

Getting tubes of blood out of me will be more of a challenge. But, then again, it always is. Sorry, I know that I’m a tough stick, I say to the technician. One butterfly, one painful stick, one swollen arm, and the tech graciously admits defeat.

Come with me, she says with a smile. I’m taking you to see The Vampire.

I follow the technician into a back room where a dark-haired man dressed in blue scrubs is standing up, peering at a computer screen on the counter.

I’ve got a tough stick for you, says the technician to The Vampire.

I sit in the chair and offer up my bare left arm to The Vampire. He looks down and studies my arm intently. While he concentrates on my veins, I check him out: (Good news; no fangs) luminous brown eyes with dark super long eyelashes, an ornamental red mark on his forehead between his eyebrows. I look at his exotically handsome face and decide that he could be the lead actor in a Bollywood feature if he wasn’t already the star of the pre-admissions testing department.

Why do they call you The Vampire? I ask.

Because I like tough sticks, he says slowly in a heavy foreign accent.

What’s your secret to hitting the tough sticks? I ask.

No secret really. I’m just the best. Trust me, it is a very spiritual thing, he says stroking the skin near the crook of my arm.

I make a fist out of habit. There’s no need, says The Vampire. Open your hand. Relax. Close your eyes and breathe and I will get the three tubes of blood we need, one-two-three-no problem. Trust me. Trust me…

His soft voice lulls me and sends me to a calmer place.

He glances down at my paperwork, Oh, I see that your birthday is coming up later this month.

He begins to sing softly and even with my eyes closed, I join him: Happy Birthday to you, Happy Birthday to you, Happy Birthday, Alysa Cummings, Happy Birthday to you.

I am done, he says, holding up the three vials of blood, and this is your birthday present.

I open my eyes and can’t help but smile. Birthday present? I’ll say it is! A gift of no pain. No bruises. My pre-admission testing completed. Thank you doesn’t begin to cover it.

Minutes later, I am halfway across the hospital parking lot on my way to the car before I realize that I forgot to ask The Vampire an essential question.

I couldn’t help but wonder –were his eyes closed too?

Living Beyond Breast Cancer will host another Writing the Journey Series in the Fall. Check back to the LBBC Blog for more insights from Alysa Cummings and future Writing the Journey creations.

Michele Roque: The Art of Survivorship

June 5, 2012

At a recent meeting of Living Beyond Breast Cancer‘s Writing the Journey series, participant Michele Roque asked if she could share some of her writing with the group. Here, LBBC shares what she read aloud to the ladies and fellow survivors in the writing group.

“Her writing felt like such a gift – a gift of words – and one that we wanted to share with fellow survivors who visit the LBBC website.”  -Alysa Cummings, Group Facilitator of Writing the Journey

The Art of Survivorship

By Michele Roque

“Be as a bird, perched on a frail branch that she feels bending beneath her,
Still she sings, sings, knowing she has wings.” -Victor Hugo

I have found that being a survivor means being afraid and brave, often at the same time. I think survivors understand that we are all connected by the inevitability of adversity. Our lives are fragile, but if we band together, connecting ourselves to family, friends and fellow survivors, we gain courage and strength.

My encounters with survivors have been both inspiring and humbling. They may look like ordinary people, but they have accomplished extraordinary feats.

Through my journey, I have tried to summon a fraction of their strength. If you are open, you’ll encounter fellow survivors who are ready to lend a shoulder and a hand.

The journey of life is one we all travel, and as we all know, it can sometimes be an uphill climb; and at other times a smooth coast. Often we are moving fast, because that’s what we think we are supposed to do. And then some difficult challenge stops us in our tracks, forcing us to slow down and hopefully regroup.

I have found that survival requires being mindful of today and being open with hope and faith, even during our most difficult struggles. For it is this that invites grace, joy and courage into our lives.


 Living Beyond Breast Cancer will host another Writing the Journey Series in the Fall. Check back to the LBBC Blog for more insights from Alysa Cummings and future Writing the Journey creations.


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