Sliced Open

Amy Reichbach is back on the blog with a poem she wrote. It was inspired by Alicia Ostriker. 

1076990_10151539621431538_1290151235_oSpooned it off and away,
nipple and all this time,
last time the odds said
the articles said
the surgeon said
Lumpectomy
the breast so big anyway
we could go in again
and no one would know.

Until
day of surgery mammogram
a technicality
until someone
called over
someone else
and they found more
we’ll try anyway
with one site, maybe two
cut away those cells
layer upon layer
learn how many more
lay in wait.

The call the next week:
good news and bad
two nodes
the spread contained:
I can breathe
those cells have not
seeped through blood
to capture all of me.
Probably.

But those spots
the ones the first mammogram missed
meant losing the breast
I’d held her to
for more than two years.

Such a hard start
we fought, my daughter and I
I believed mothering
meant feeding by breast,
only by breast
and mine certainly should work
given their ample size
passing an early test of motherhood,
I thought love
protected the breast.

Maybe it was brought on
by end of love
cells bursting
through anger, betrayal, shock
after fourteen years, an affair
end of love
why had I picked you
to cut me, sliced open
you didn’t mince words
when you left.

I had already become a statistic
one more of those who would divorce
following a seven year itch
you needed to scratch
within a decade of gaining the right
to marry.

In our home now
my daughter
notices the noises
people in and out
trying to cover over
fill in
the imprint of my wife
while in her other home
she notes the quiet
her other mother,
her young lover
and their demons
her only company.

And so I grade papers,
I listen to wind,
the empty echoes
and try not to
get stuck in the spaces.
Divorce. Cancer.
You never think it will happen to you,
what happens every day to other women.

Cancer and Sex

Don S. Dizon, MD, FACP, regularly blogs on ASCO Connection, where this post originally appeared. Learn more about sex and intimacy after a breast cancer diagnosis during our Twitter Chat, Tweets from the Sheets, on Wednesday, June 24.

dizon_don 2012As an oncologist who also runs a sexual health clinic for women treated (or under treatment), I am discovering that my perspective on both issues of cancer treatment (and survival) and life after cancer (and quality of life) is somewhat unique. I am conscious of how difficult it is to bring up cancer therapy and survivorship (let alone sexual health) within the same discussion, yet I have gained a heightened sensitivity of the importance of looking beyond treatment even while we are discussing what to do now. I have benefitted greatly from colleagues in the field of sexual health, such as Michael Krychman, at UC Irvine, and Anne Katz, in Canada, both of whom I have been privileged enough to count as colleagues, co-authors, and contemporaries.

I am even more fortunate that one of my friends here in Boston also shares my interest in women’s health. Sandy Falk is a gynecologist and sees cancer survivors for women’s health issues at the Dana Farber Cancer Institute. In our practices, we both see the adverse effects of therapy that patients have to cope with. However, far from the arthralgias of aromatase inhibitors and neuropathy of some of our chemotherapeutic agents (two symptoms which we as oncologists are comfortable discussing), sexual health is often compromised.

There are common complaints encountered by those of us who cover sexual health. They include:

  • “I’m done with treatment, but now I can’t have sex. It is too painful and my sexual desire is completely gone.”
  • “Why didn’t my oncologist warn me about this? Maybe if I had known my partner and I could have worked on this early on. But now, so much time has passed now and my partner and I have lost patience.”
  • “I’m not sure how to go on with my relationship.”

Those may be extreme examples, and I hope for most oncologists that they are. However, what I do know is that these perceptions do exist—inside and outside of medicine. When the paper on AI treatment was picked up by several sites, I had read some comments posted and was disheartened to see that some of the thoughts above were reflected: “A woman should be lucky to be alive,” one stated; another said, “You can’t have sex if you’re dead.”

I believe most oncologists do not discuss sexual health with their patients and as an oncologist, I understand why. Most clinicians reading this might think (perhaps unconsciously) that the patient is “lucky to be alive.” And of course, she is. And we also know that she probably wouldn’t have had the ability to hear detailed information about sexual health during the diagnosis and treatment planning process—there were much bigger priorities then. Continue reading

Reflecting on ASCO 2015

Living Beyond Breast Cancer’s Erin Rowley shares her experience attending this year’s annual meeting of the American Society of Clinical Oncology in Chicago, Illinois. Download the audio recording and presentation from our June 4 ASCO webinar to learn about updates from the 2015 meeting.

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The American Society of Clinical Oncology (ASCO) has existed since 1964, and has held an annual conference for almost as long. ASCO created the Journal of Clinical Oncology, a publication in which many important breast cancer studies appear, and cancer breakthroughs are often announced at ASCO’s annual meeting. For years, representatives from Living Beyond Breast Cancer have attended this conference in order to hear about the latest in breast cancer research, and to pass that information on to you, to help you navigate life after a breast cancer diagnosis.

As LBBC’s writer and content coordinator, I went to this year’s conference, which took place May 29 to June 2, in Chicago. It was my first time at the event and it was an exciting opportunity to join the more than 30,000 people from all over the world who were in attendance. Some, like me, were there as patient advocates, representing people with cancer. But the vast majority of people there were cancer doctors. They came to present their own research and to learn from their colleagues.

Over the course of 5 days, thousands of studies, hundreds of which related to breast cancer, were presented; and dozens of educational sessions, in which doctors discussed what recent findings mean for their day-to-day practices, were held.

Moving between sessions about surgery, different breast cancer types, quality of life and other topics required quick navigating of McCormick Place, the largest convention center in North America. I’m certain I walked a few miles as I zigzagged through the crowds! In situations where I couldn’t be in two equally-interesting sounding sessions at once, ASCO’s use of technology and social media were really helpful. Many sessions were filmed, and the Twitter hashtag #ASCO15 helped me see what aspects of the conference people were most excited about. Even though ASCO has been over for about a week, people are STILL using the hashtag to continue the conversation. (Check it out for yourself!) Continue reading

The Spirit of Pageantry

Natalie Gamble is back on our blog with a post about supporting her daughter while in treatment for breast cancer, pageants and being honored with the “Spirit of Pageantry” Award.

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Life doesn’t stop because of a breast cancer diagnosis – it goes on. How you decide to approach that life is up to you. Me personally, I never missed a step.

After deciding on a treatment plan and scheduling my surgery I was on my way to Virginia Beach with my daughter for the International Junior Miss. Some background information about this trip: My daughter Mikayla is my hero and one of the strongest, most driven individuals I know. I tease her all the time that I want to be just like her when I grow up. At the tender age of 9 she announced she wanted to be a microbiologist and will be attending U.C. Berkeley to earn her degree, and here is the kicker – she wants to pay for it herself!  Since those words left her mouth, Mikayla, now 14, has made it her mission to do just that. Besides maintaining a A/B average in school, she competes in natural pageants to earn scholarships, pageants like International Junior Miss.

As a pageant mom, I wear many hats: tailor, beautician, coach, travel agent and cheerleader to name a few. Needless to say, my cancer diagnosis was a huge hiccup in my role as her support system. Monetheless, I was determined to work around it.  On our way back from an exhausting week of competitions, I received a phone call from my daughter’s new pageant director Christina Sacha Grooms, who introduced herself to us and updated us about the rest of my daughter’s reign.  I informed her of my diagnosis and told her that no matter what I would get my daughter where she needed to be.

While I was fighting the good fight in treatment, my daughter was reigning as International Junior Miss’ Colorado Preteen 2014. And as promised she was at every event, photo shoot, and appearance as scheduled. Our pageant family was just as supportive as our immediate family and to this day, I thank God for these incredible people. Every time we saw each other it was a family reunion and it touched my heart to know they read and looked forward to my Facebook posts. Every day I tried to share my feelings and thoughts with my family and friends.  Continue reading

The Art of Sharing (or Not)

Amy Wu is a panelist for our Breast Cancer 360: Mapping the Future for Young Women With Breast Cancer, taking place Saturday, June 13 and offered through FREE Web stream. In this piece, Amy writes about sharing her breast cancer experience with family and friends and how she coped with their reactions.

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When bad things happen most folks either retreat or share. I am of the latter. I tend to share.

When life throws its lemons I pick up the phone and call my constellation of close friends and family. Bad hair day. Stressful work day. Bad commute. I will share on the phone, by text, or on Facebook.

And then something interesting happened. In the wake of being diagnosed with breast cancer in May 2013, I clammed up. I shared just enough of the bad news with immediate family out of necessity and then retreated. I just wanted to be left alone and even deactivated my Facebook account.

Beyond the initial shock I swiftly started to share again. I shared my story with the local newspaper. I shared with my friends. I shared my story on social media. I shared with colleagues. I shared with my 93-year-old grandmother who insisted on knowing what was going on. And I shared with my then fiancée. I didn’t just text or email. I picked up the phone and shared. I shared in person sometimes over coffee or an adult beverage. In retrospect I’m not certain as to why I shared so swiftly and vastly. I just know that I shared my story with almost everyone I encountered.

What I was not prepared for the reactions I received or didn’t receive. This is one of the unspoken challenges of being a young woman diagnosed with cancer. No one expects that the news would come from someone so well, young.

“No way, you’re so young, it doesn’t make sense,” a lot of friends would say. I’d shrug. Yeah, well. Oh well. Continue reading

Kindred Spirits at Namas Day Philadelphia

This blog post by Liz Barker originally appeared on ChangedbyChance.com on April 28, 2015. It was reprinted here with the author’s permission.

I volunteer at numerous Living Beyond Breast Cancer events through the year. Spring brings an all-day yoga event called Namaste`Day to Philadelphia. LBBC is an advocate of yoga because of its mind, body, and spirit connective healing philosophy. They appreciate that healing a life threatening illness such as breast cancer needs to be addressed with all of the body’s senses. And so, they had a booth at Namas Day and I volunteered because I love yoga.

Typically, there are at least 2 of us survivors at an LBBC event and it is always nice to meet someone new and to hear their BC story.

Well, this encounter turned out to be extraordinary! (Of course, it should have been no surprise given the spiritual nature of Namas Day.)

So, my fellow volunteer that day is Elizabeth Howanski. As usual, we swap our Breast Cancer stories. As usual, I expect that when I tell my new friend that I am a 24 year, young survivor, she will be wowed by the survivor-ship years. Which I am grateful for every day folks.

LBBC EventHowever, much to my surprise, Betsy tells me that she is a longer survivor! Although we are both the same age (58), Betsy was diagnosed younger, at age 26. Therefore, she is now a 32 year survivor! Neither of us has a family history of BC. Our name and age similarities don’t end there. Betsy was also diagnosed while she was pregnant, at about 5 months along with same timing – diagnosed in May and due date was early October! We were both given the same trite, horrifying advice by our doctors – “terminate your pregnancy to save your life.” Sadly, our parallels end here.

Betsy followed her doctor’s advice and reluctantly terminated her pregnancy. (Remember, there was no Internet and not much history of BC at young ages or during pregnancy back then. Without question, doctor knew best.) I almost followed that advice but, I was fortunate that a family friend, a doctor himself, (an angel I call him), intervened and saved my baby’s life. Betsy and I wept and hugged as we shared our stories. I felt a bit guilty and humbled, that I was touched by an angel and that Bryan was saved. More importantly though, I felt a kindred spirit with Betsy, not only due to our similar past, but also because of our futures and our philosophies of “living beyond breast cancer.”

Betsy bravely moved on with an enthusiastic and positive spin on life. She adopted 3 wonderful children from Korea who are now 21, 29, and 31. She is a long time professional working at Drexel University’s development office. We both echoed the same sentiments about our lives – that the BC experience was a life lesson. It taught us both some sage advice. That we need to be self-advocates and to educate ourselves when we are faced with serious obstacles in our lives. It’s the 3 R’s that I talk about in my book – Recognize, Research, and then React. Live and learn.

Another day, another journey… Namaste~

Liz Barker Author Living Beyond Breast Cancer

Liz Barker is a longtime LBBC volunteer. Learn more about Liz and her personal experience with breast cancer on her blog, ChangedbyChance.com.

Embracing Community and Participating in Yoga on the Steps

FullSizeRenderMarisa Gefen, MD is a 35-year-old physician and mother who has now added “patient” to her resume. She was diagnosed last April with ER/PR-positive breast cancer. Marisa reflects on how this journey led her to Living Beyond Breast Cancer and Yoga on the Steps.

After my shocking diagnosis in April 2014, I immediately went into survival mode. I hyper-fixated on getting through the current phase of treatment and onto the next phase. It was a whirlwind of getting a port, quickly followed by starting chemo, managing chemo side effects, finishing chemo, then on to a 9-hour surgery comprised of a double mastectomy, sentinel node biopsy, and free flap breast reconstruction. Soon, I was home recovering from this massive surgery and then stumbling into radiation daily for 5 weeks.

Then, I woke up one morning in January and suddenly realized that active treatment was all over. Now what? In this frightening journey, I was missing a sense of community of others with similar experiences, both past and present. The endless support from my husband, family, and friends, did not fill the entire void.

I heard about Living Beyond Breast Cancer right after my diagnosis. When I happened to be looking for local office space, my tour of commercial real estate ironically took me right through LBBC headquarters, which I toured. The office was warm and full of young, vibrant people. I wasn’t ready at that moment to reach out.

I was reintroduced to LBBC in December, when I tried frantically to interpret the results of the Suppression of Ovarian Function Trial (SOFT). This major trial will likely change the standard of care for me and other women under age 35 with ER-positive breast cancer, by recommending induction of early menopause (as if we haven’t been through enough) and possibly switching from tamoxifen to an aromatase inhibitor. Continue reading