Good, Confident and Sexy: Becoming Whole Again

Breast cancer can impact sex, intimacy and body image whether you’re single or in a relationship. In anticipation of our Twitter Chat on Wednesday, June 24, AnaOno Intimates Owner Dana Donofree blogs about her experience regaining confidence and embracing her desirability after treatment.

Dana_Broken Dolls post

I often compare myself to a broken doll. Not the kind that was so beloved, it was carried everywhere, slowly fading and falling into disrepair over time as if it were aging gracefully. More like the kind that was once beautiful, but its owner decided to take construction paper scissors and hack its hair down to oddly shaped tufts, to accidentally (or on purpose) break off a limb or two, scar the midsection with a Sharpie and leave it half bent and mutilated in in the corner of her closet.

Because that’s what breast cancer did to me. It took a perfectly acceptable woman and turned her into a shadow of herself, and when it is all said and done, it made her feel broken, ruined and rejected.

When I was first diagnosed, what was about to happen to my outward appearance wasn’t even on my mind. I thought I had it all together, the strength, the attitude, the “let’s do this.”

See, I was never terribly attached to my breasts. I never even really thought about them all that much. I was 27. My boobs were small, but perky. They hadn’t done anything hero-worthy like nourish a child. Their biggest accomplishment was being able to exist without a bra. Their greatest time to shine was on weekend party nights when they could hang out in a super low-cut blouse and up my va va voom quotient.

So, when the time came to go our very separate ways, my friends threw a “Ta-Ta to Dana’s Ta-Tas” party and they had one last night out on the town in the lowest plunging neckline I could find.

I was pretty flippant and casual about parting with my two of my lady parts. Friends and family took bets on which of my surgeons, Dr. McDreamy and Dr. Hottie, was the better catch. I joked that they would be the last to ever cop a feel of my original breasts.

I thought I was going to be just fine afterward. That it wouldn’t faze me in the least.

But, I never could have prepared myself for what it felt like, both physically and mentally, when I woke from surgery. For something I felt I was completely comfortable with and ready for, losing them, my breasts, shook my world.

I took off the bandages, and saw this alien staring back at me in the mirror. I was mutilated. I was swollen. My scars were their own entity  purple and protruding like someone had chainsawed me up and stapled me back together.

It is not at all what I had imagined. Where was this “We are replacing your boobs with ones just like them so you can feel ‘normal’?” I hadn’t expected to look like a badly-repaired Lego. I expected to kinda come out looking more implanty-boob-job like. This body was the farthest cry from normal I could have ever imagined. Continue reading

Hair

Amy Reichbach shares an essay she wrote in Writing the Journey, a 6-part workshop series offered in-person or online for women affected by breast cancer. She dedicates the piece to her 2012-2013 Civil Procedure class at the University of Massachusetts School of Law (pictured below). 

UMass Civ Pro 2012-2013

I dyed it pink as day seventeen approached. I wondered if the falling out would be slow, snaking its way strand by strand down my shoulders, past my hips to the floor. Or sudden, clumps of dark blonde hair appearing in my hands during a shower, or when I casually reached up to idly twist some strands during a conversation. I couldn’t cut it short, even though so many said this would make it easier. But I had lost a breast already; this would be another piece of my femininity gone. And so with my four-year old daughter by my side I cut two pieces of the long hair I’d always had, tied them with ribbons – one for her, one for me. Then, with a friend’s help and some hair dye, we became pink.

Amy Reichbach (pictured in the middle).

Amy Reichbach (pictured in the middle).

And somehow, a few days later, after I stood in front of my class of first-year law students explaining that I would be starting chemo and losing my hair sometime after their final exam, and that I’d gone pink with my daughter to help ease her anxiety about my impending baldness, they all showed up pink too. These special people who had kept me working, who had motivated me to return as soon as possible after each surgery – their beards and hair and clothes were all pink. My attendance sheet went around that day and came back covered in pink stickers. Pink cookies had been baked and stacked on a plate at the front of the classroom.

I cried.

And then I taught. And they learned another sort of lesson – that it was okay to be vulnerable, that connection mattered, that every day we would come back to the same room and do what we did.

Amy Reichbach is a lawyer, educator, and divorced lesbian mom living in the Boston area. These pieces were written during her participation in LBBC’s online Writing the Journey program facilitated by Alysa Cummings.

On Hair Loss

Last week, our Facebook followers shared hundreds of tips for coping with hair loss. Blogger Judy Weinstein wrote this post about her personal experience with hair loss and how she handled the side effect.

judy_newyearseve

When you get a cold, you feel sick right away. Strep throat? It’s obvious something is wrong! Kidney stones? You are in the hospital crying in pain. Cancer is different.  Cancer silently does its evil damage while you are going about your daily life. You are working, laughing, and likely “sweating the small stuff” while your cancer sneakily divides and tries to conquer.

One day you wake up and realize that something isn’t quite right. You have a slightly unusual lump, a little blood where you shouldn’t, or unexplained pain. Then the bombshell is dropped. “You have cancer.”

For many women who endure chemotherapy, one of our preoccupations is about becoming bald. I was squarely in that category. I generally don’t wear make-up and I don’t spend a long time pondering what to wear.  I did, however, spend a lot of energy over my lifetime thinking about my hair. I will always remember the very first time I cut my long hair up to my chin. I was in 6th grade.  One of my parent’s best friends said “Today we lost our little girl.”  I puffed with pride that a shorter haircut could make me look all grown up. Soon after, I grew it out and curled the front in a desperate attempt to look like Farrah Faucet. Then later came the big hair stage… even with a perm my straight hair didn’t cooperate!

After my third baby was born, my hair began to change. I started to become gray and over time my hair became more wavy, frizzy and unruly.  And did I mention gray?  Those wiry gray strands were the worst!

Figuring out a style that was best became a monthly challenge.  What was the right color for my changing hair? This time it was too blonde…this time too red. Should I go short? Long? Bangs? No bangs? One style was good for the winter and another for the summer humidity. One style worked for pulling it back when I played tennis but wasn’t flattering at other times! My patient hairdresser, now a close family friend, made whatever changes I asked for, knowing that I would always second guess my hair decision.

Once I had a cancer diagnosis and knew I was facing hair loss, thinking about becoming bald was admittedly terrifying. How humiliating to lose what I thought played such a heavy role in defining my looks and by extension, who I am. My cousin told me about the penguin caps one can wear during chemotherapy that works to prevent hair loss. Suddenly my emotions began to shift. The only thing I could think of worse than losing my hair, was to sit for several hours, being infused with toxic chemicals, wearing an ice-pack on my head. I was NOT willing to do that to prevent hair loss.  So maybe, just maybe if I wasn’t willing to go to such great lengths to prevent hair loss, perhaps it wasn’t as important as I initially thought.

I began losing my hair on January 1.  While I had the rest of my uncomfortable treatment ahead of me, I also had the hope and wonder that comes with any new beginnings.  What would this year bring? Finishing treatment, my middle son graduating from high school and starting collage, my youngest son starting high school and thanks to this treatment, celebrating my half century birthday! Never before did I deeply appreciate the thought of reaching this milestone.  As my grandmother used to say “It’s better than the alternative!” Continue reading

Offering Support for the Newly Diagnosed: Tips for People Who’ve Been There

New LBBC blogger Joanne Hampton posts tips for offering the best possible peer support for people newly diagnosed with breast cancer.

joanne hampton photoMy journey has consisted of nine surgeries, chemotherapy, radiation, and a positive diagnosis of BRCA1. I am an 11 year survivor. I have spoken at numerous events, sat on different committees, ran many successful fundraisers, and yet, I still feel awkward talking to someone who is newly diagnosed. They look up at me like I am about to reveal some great secret advice to get them through this. Tears begin to form in their eyes they ask me questions like “What now?”

Even though I, too, am a breast cancer survivor and have traveled a similar path, I don’t always know what to say. Because of this I was inspired to do some research for myself and other breast cancer survivors who want to offer that glimmer of light at the end of the tunnel for someone recently diagnosed.

I want to focus on some tips to think about when you are asked to speak to someone who is diagnosed with cancer. So that you can make it easier by giving them strength, make a difference by inspiring, and help by holding a hand.

Tip #1: Each person’s reaction is different.

This is very important. I can’t stress this enough. The most miniscule thing to one could be earth shattering to another. To me, losing my hair was the least of my worries. But, I have met a lot of women who were devastated and felt they had lost their dignity along with their hair. A person can’t always help or control how they feel. There’s no rhyme or reason, there’s no right or wrong but, they are real feelings and people will react differently, based on those feelings. Not all wounds are so obvious. Walk gently in her life.

Tip #2: It is not all about you and your journey or the journeys of others.

Be sensitive to her journey. Make sure you do not compare. Try and avoid saying things such as, “I know how you feel,” or “I know how hard it can be”. She needs to be herself and take her own journey. The secret is changing saying “I know” to “I understand”… because to an extent you do. As for comparing, most of the time people don’t even know they’re doing it. We don’t want her to feel bad if she isn’t living up to the expectation she sets for herself based on your experience. Continue reading

TNBC Aware: Raising the Voices of Those Left Behind — LBBC’s Triple-Negative Needs Assessment

LBBC’s Senior Director of Programs and Partnerships, Janine E. Guglielmino, MA, concludes our TNBC Aware series with this post about LBBC’s survey findings and the needs of women diagnosed with triple-negative breast cancer.

One morning several years ago, an LBBC colleague rapped on my office door. She was distressed. She had just spoken to a woman with triple-negative breast cancer, a term we had only recently started using after it appeared in scientific journals.

The caller was crying, despondent. She had gone online to learn more about her diagnosis, which websites described as “rare,” “aggressive,” and “difficult to treat.” Someone she trusted had asked her why she couldn’t “just take one of those drugs I keep hearing about on the news.” Why, the caller pressed, does it feel like there is nothing and nobody out there for me?

That call was not the first LBBC had received about triple-negative breast cancer, or TNBC, a subtype that does not respond to therapies targeting estrogen, progesterone or HER2 receptors. Almost daily, we heard from women who felt deeply anxious and worried about their future. Those with early-stage TNBC feared recurrence, while women with stage IV demanded research to expand their limited their treatment options. All clamored for more, better, evidence-based information that could guide them through diagnosis, treatment, and beyond.

It was clear LBBC needed to take action. We partnered with the Triple Negative Breast Cancer Foundation on a Guide to Understanding Triple-Negative Breast Cancer  and a two-part webinar series, held each April. We developed a website section on TNBC, posting subtype-specific research news and clinical trials. But we knew we needed to do more. We needed evidence we could share with anyone who serves people with TNBC.

So in 2012 we sought funding to conduct a comprehensive needs assessment of women with TNBC, modeled closely on LBBC’s previous studies for women with metastatic disease and premenopausal women. Working with researcher Kathleen Swiger, MPH, we recruited an executive committee of advocates and prominent clinical professionals with a research interest in TNBC. We interviewed seven healthcare providers and women about their experiences, and held focus groups in four regions.

We then designed an 80-question online survey, informed by these activities, to answer one key question: Do women with TNBC want education, information and support tailored to the cancer’s triple-negative status? Continue reading

It’s About You: Lynn Folkman’s Story

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.   Continue reading