Amy Hauser: In His Grip (Part One of a Two-Part Series)

Amy Hauser never considered herself destined to be an author. From her self admitted “life-long inability to properly start and stop paragraph formations, among other things,” to being busy raising two children full time, a book simply was not on the radar.  Until God said otherwise. Today, the LBBC Blog welcomes Amy to tell her story of how her religion helped her to survive.

My name is Amy Hauser and I am a fellow survivor of breast cancer.  Here is my story. It’s a simple story of an ordinary life and its challenges intersecting with an extraordinary God. With that, I think it is worth telling.

I was diagnosed with Invasive Ductal Carcinoma in May 2010 after discovering a walnut sized lump under my arm just two days after my annual well-woman exam.  What a mammogram was unable to detect, an ultrasound verified – that cancer had entered my lymph system. At 43, I began a six-month intensive chemotherapy plan, underwent a bilateral mastectomy and lymph node dissection, then a final reconstruction surgery. The entire process lasted roughly 12 months. During this time, God revealed Himself in mighty ways.

Before, during, and after my walk with breast cancer, my prayer was for God to show me His plan for my life, to show me how to use past trials (pre-cancer, that is) in unique ways that would bring blessing to others. The answers to those prayers has changed the course of my life as well as that of my family’s.

After the diagnosis, I reluctantly started to journal. I agreed it would be a way to streamline information, and keep me from getting tired of repeating my medical updates over and over again. The blogging quickly became an outlet for sharing my heart. God would prompt me to share something and instead of letting the fear of judgment from others rule, I would share my thoughts. Almost immediately, we were encouraged (and surprised!) to discover that others were gaining inspiration and that the insight channeling through the journal was powerful. That was God.

Several months after treatments had begun and as I began the process of getting life back up and running as normally as I knew how, I recall sensing God asking, “Just when are you going to start writing my book?”  I sorted through the doubt, heeded the lessons He taught me through cancer and that next week I began IN HIS GRIP…A Walk Through Breast Cancer.

IHG is a raw, open glimpse of a day in the life of a cancer patient and the story of God intersecting a life in progress. It is a story of how God works in the midst of our biggest struggles IF WE CHOOSE TO LET HIM. Not only will you get to know my family before, during, and after the cancer journey, you will see reflections that share what was learned after the fact.  This story shows how God worked not only on the struggles that were evident to the rest of the world, but how He worked in and through the cancer to heal deeper, more private wounds.

IHG was completed near the two-year anniversary of the lump discovery – a discovery that I initially thought would change my whole world.  Interestingly enough, it did change my whole world, but not as I expected.  While I thought breast cancer would rock me off my foundation, it did quite the opposite.  It cleared that foundation from clutter and allowed me to firmly anchor to what was lying beneath – the solid rock that was so readily available and intended for this purpose.  I just had to be willing to look and allow some of the clean up to take place.  Storms will continue to come. I don’t welcome them but I know they are inevitable – inevitable in ALL our lives, whether cancer or otherwise.  I know this story, His story, will be an inspiration for trials of MANY kinds.

God not only answered my cancer prayers, but my pre-cancer ones as well. From the inspiration to write IHG, to showing me how to “find my purpose and share with others through UNIQUE ways.”

Prior to the discovery of the lump, we formalized a ministry called Made For More, developing and sharing some unique women’s programs. Since the cancer, my husband Tom and I have fully launched M4M.  Several aspects have grown out of various trials in our own lives, cancer being only one of them.  An outreach program that I am excited to share is our newly developed HORSES.HEALING.HOPE. For Breast Cancer Survivors. It is an Equine Assisted Therapy program, currently offered in the North Houston, Texas area.

NO matter what your religious or spiritual beliefs, LBBC recognizes the strength that many woman find in their faith. Amy lives in The Woodlands, Texas with her husband, Tom and their two children, Ross (17) and Sara (12). Visit their websites to earn more about  HORSE.HEALING.HOPE for Breast Cancer Survivors and In His Grip:A Walk Through Breast Cancer.

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

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.

Cate Stasio: “Chemobrain” and Posit Science

Guest blogger and survivor, Cate Stasio of Posit Science, is truly thankful for today’s scientifically-validated treatment options for “Chemobrain.”  Today on the blog, Cate share’s some monumental research and a great deal of heart on the subject.

Cate Stasio

When I received my cancer diagnosis, and discussed the fact that I was having difficulty remembering things and paying attention with my doctor, she told me it was “all in my head.”  (BTW, this was less than 10 years ago.)  Granted, her focus was on keeping me alive, and, while this conveniently was a mutual goal, I was struck by the fact that she could be so dismissive of the cognitive symptoms that were seriously disrupting my quality of life.

My fellow survivors, I found, were very vocal about the developing cognitive “inefficiencies” that made it difficult for them to multi-task or follow-through on work projects or family responsibilities.  Like me, these cancer veterans were dismayed by the lack of solutions available for our slowed thinking abilities—all the note taking or calendaring in the world couldn’t compensate for our uninvited lack of mental agility.  The Internet was rife with arguments over what caused cancer-related cognitive impairment; those 17 to 75% of us affected didn’t care about what started it, we just wanted to fix it.  We dreamt about having some modicum of control over an illness that had the audacity to remind us frequently that, in many ways, we were helpless.

Around this time, the founders of Posit Science, Drs. Michael Merzenich and Henry Mahncke, were not just talking about “chemobrain,” they were rolling up their sleeves in an effort to alleviate it.  As renowned neuroscientists, they hypothesized that some combination of stress, fatigue and medication/radiation treatment could weaken the myelin in the brain of a person with cancer; interfering with connections that help relay important information from one brain area to another.   Under their careful guidance, Posit Science developed and was the first to study a suite of computer exercises based on the principles of brain plasticity; designed to help people with cancer think faster, focus better and remember more.  Originally released at the International Psycho-Oncology Society in 2008, breast cancer survivors who reported chemo brain symptoms who used Posit Science training reported significant benefits in cognitive function and quality of life with resulting reductions in stress levels.  By completing an hour a day of cognitive training, participants showed that they had the ability to fight back and recapture the brain function and sense of self that cancer had interfered with.

Additionally, Dr. Diane Von Ah, an avid member of the Oncology Nursing Society who has spent years looking for evidence-based interventions for chemobrain, this month reports finding one.  In a study published in Breast Cancer Research and Treatment, Von Ah et. al. studied 82 cancer survivors reporting cognitive impairment.  Participants who received Posit Science training showed significant improvements in memory, thinking speed, depression, fatigue and health-related quality of life.  Additionally, Posit Science training recipients felt less anxious after completing training; with benefits lasting for months afterward.

People who read about my interest in chemobrain typically ask 3 questions:  1) Does chemobrain affect only breast cancer survivors?  2) How long does chemobrain last?  3) Who with cancer should use Posit Science cognitive training?  Recent reports and personal experience have helped shape my responses to these.

A 2010 study by Harrington et. al. demonstrated that cognitive limitations, depression, and fatigue consistently persisted in survivors of breast, gynecological, prostate and colorectal cancers 10 years or more following treatment.  These symptoms were present regardless of the types of pharmacologic or radiologic treatments endured.  To me this says that no one knows who will be affected by chemobrain, or how long it will last.

My response to who should use Posit Science cognitive training is pretty straightforward (though I have to admit that I am such an advocate of it that I convinced Drs. Mahncke and Merzenich to let me work for them.)  I think Posit’s cognitive training program is appropriate for anyone like me whose cancer diagnosis only increases their desire to be their best self for the people who love and depend on them.  I think it’s for anyone with an Internet connection who can spare 15 minutes a day to think better on their feet and remember all the little things they’re still lucky enough to hear their kids say.  I think it’s for people who, regardless of the stage of their cancer, can hear the words, “it’s all in your head” and find them empowering instead of belittling.

Those interested in subscribing to the program described in Dr. Von Ah’s study can do so by visiting www.BrainHQ.com.  Posit Science will be honored to donate 20% of your subscription to Living Beyond Breast Cancer. 

Like many cancer survivors who have been affected by cognitive impairment, Cate is thrilled that a scientifically-validated treatment option is now available. Upon submission, Cate let us know that there have been times in her life when bonds forged through LBBC were the only things that got her through the day, and she said, “There are no words with which  I can properly express my gratefulness to you and the LBBC organization.”

Posit Science is the leading provider of clinically proven brain fitness training. Its exercises, available online at www.BrainHQ.com, have been shown to significantly improve brain speed, attention, memory and numerous standard measures of quality of life in multiple studies published in more than 60 peer-reviewed articles in leading science and medical journals. This includes a study showing positive benefits for people experiencing chemobrain. The company’s science team is led by renowned neuroscientist Michael Merzenich, PhD.

Josh Fernandez: Debra Jarvis and Finding Meaning

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 three)

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  offer one more installment from Reverend Debra Jarvis, our closing plenary speaker at this year’s event, as she discusses her experience with the “Random Voice Of God.”

A few months ago I took a four-hour trip to a mineral springs to celebrate a friend’s birthday. We all agreed we would not do this again for one weekend.

However all the travel gave us plenty of time to witness the Random Voice Of God (RVOG). Like a “found” poem the RVOG is everywhere. We first encountered it at a toll bridge where we read the sign, PROCEED WHEN CLEAR.

This is good spiritual advice. We noted it accordingly. Don’t proceed without clarity. Just wait. All shall be revealed in the fullness of time. But our culture rewards the quick, the speedy. Decide now! Au contraire, my friends. A wise woman once said to me, “Never make a decision in the presence of the person who is asking the question.”

She didn’t mean at the latte stand or in a restaurant. She meant questions like, “Will you take this job?” “Mastectomy or lumpectomy?” “Can you take my kids one day a week?” Think about it. Sleep on it. Proceed when clear.

One of the pools at this mineral spring accidently got up to 125 degrees and we considered poaching chicken in it. Posted in front of it was another sign from the RVOG: STAY OUT OF HOT WATER.

You would think this would be obvious, but I can’t tell you the number of people we saw who tried to dip their feet in it. What were they thinking? What makes us do things that will so clearly burn us?  Curiosity? Stupidity? A misguided sense of daring or rebellion? Grow up. Stay out of hot water. Life hands you enough hot water without your jumping into it.

That night my friend was handing out pieces of birthday cake. The edge pieces had lots of icing, the middle not so much. So she asked my friend, “What would you like?”

And my friend replied, “I’d like an inner piece.”

“Wouldn’t we all!” I shouted. But it was really the RVOG at the food fest reminding us that an inner peace is desired by everyone.

So I suggest we put it out there to the Universe: I’D LIKE AN INNER PEACE.

My favorite sign of all was posted next to Acacia cemetery on Bothell Way in Seattle. Sometimes we just need a sign from the Random Voice Of God that affirms what we already know, that reassures us by stating the obvious. The sign read: DEAD END.

Well, duh. Thank you anyway.

But hold on! It did make all of us in the car ponder what are the dead ends in our lives? What attitudes, beliefs, behaviors, friends no longer serve us but are holding us back, that are DEAD ENDS?  Where are your dead ends?

So stayed alert.  The RVOG is everywhere. Where have you witnessed it?

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.

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

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 entertains us with a story about a chair.

A couple years ago Wes and I went on a three-day silent Buddhist meditation retreat. The schedule was this: up at 6:15 a.m., 45 minutes of sitting meditation, 30 minutes of walking meditation, 45 sitting, 30 walking, meal. It went on like this until 9 o’clock at night.

Wes sat in a chair (as did many people), but I chose to sit cross-legged on a meditation pillow and then switch off and sit on my meditation bench. I sit half-lotus all the time in yoga, no big deal. However I have never sat like that for 45 minutes. It was brutal.

By the end of the second night, I thought I was going to die. So I thought for the last sit of the night, I would be in a chair.

There were these green plastic lawn chairs that cost about twenty-five cents to manufacture. I was a little late getting in and everyone was in place so I quickly grabbed a chair and sat down in the back.

Instant nirvana. It was like sitting in the lap of a lover; like sitting in a hot fragrant bath; like sitting on a heavenly throne. Why had I been torturing myself for two days? Why this was the most comfortable chair in which I had ever sat! I felt embraced by the chair, loved by the chair.

We were supposed to be doing vipassana meditation which is being in the present moment and simply watching your thoughts arise. Here were my thoughts:

I love this chair.
I want one of these chairs.
Could I could put it in the living room?
I would meditate every day if I had one of these chairs.
I wonder if they have them at Fred Meyer?

You can see this was not keeping me in the present moment. So I decided to do metta meditation which is “loving kindness.” You think of someone and then send them unconditional love.

May you be peaceful and happy.
May you be safe and protected.
May you be strong and healthy.
May you live with ease and joy.

So I started with that, praying for myself first, which is what you are supposed to do. I couldn’t help thinking how peaceful and happy I’d be if I had one of these chairs.

Stop thinking about the chair! And then I thought, “Ah, Grasshopper! What you resist, persists!” So I did metta for the chair.

May you be peaceful and happy. You would be in my house.
May you be safe and protected. I would never leave you out in the rain.
May you be healthy and strong. May you never break a leg. Or your back. Or your seat!
May you live with ease and joy. I would give you your own little corner.

I couldn’t stop. At the end of the sit I realized that it was my physical pain that kept me in the present moment. For the rest of the retreat I was either on my pillow or on my bench. Brutal, but focused.

Enlightenment eluded me that weekend. And I’ve never found those chairs. But I’m keeping my eye out for both.

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.

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

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

Living Beyond Breast Cancer hosts 3 national conferences, 14 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.

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

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. In this final installment of her three-part series, intern Judy Zwillenberg reflects on what she’s learned here at LBBC.

With my internship drawing to a close, I wanted to take some time to remark on the dedication of LBBC’s staff. I don’t think I’ll adequately be able to explain their passion for what they do, but I will try to convey to the readers some of what I have learned from them.

My supervisor suggested that I meet with many members of LBBC’s staff to find out about their careers and why they chose LBBC and non-profit work. As expected, these meetings not only provided me with helpful advice for my future, but also allowed me to see LBBC from the eyes of those instrumental in its success.

For many members of LBBC’s team, working at a breast cancer nonprofit was not a normal step in the progression of their careers, and several even had jobs outside of the health field. Furthermore, some of the staff had no personal connection to breast cancer prior to their employment at LBBC. Nevertheless, through working at LBBC, they have found jobs they feel are worthwhile and important. And, for those whose lives were affected by breast cancer, whether through their own diagnosis or that of someone close to them, LBBC provides an outlet to better the lives of other women coping with the disease. By navigating women through diagnoses, treatments, and concerns after cancer, they feel that they are “working for a reason” and find meaning in what they do.

After interning at LBBC’s office for the summer, it has become clear to me that LBBC truly is a unique organization. LBBC genuinely cares about women with breast cancer. It is a place where all women of different ages, breast cancer stages, and races are welcome, and receive individualized care and support. For every issue or question, LBBC is available with expert programming, conferences, and access to other survivors who have been in the same situation. LBBC ensures that women’s concerns are addressed in a respectful way, and works hard to give women tailored information in the hopes of making their breast cancer struggle less difficult.

Importantly, every member of the staff fully believes in the mission statement of the organization: to empower all women affected by breast cancer to live as long as possible with the best quality of life. In my opinion, this is what makes LBBC such an accomplished non-profit. Living Beyond Breast Cancer’s commitment to its mission statement guarantees LBBC is sensitive to women’s needs, and provides high-quality resources that are informative and helpful. It doesn’t force any ideas or materials upon women, but simply gives them tools to make the decisions that are right for them. As one member of the staff said, “It’s not what we say, but how we say it.”  Finally, since LBBC is so dedicated to its cause, it makes certain that the purpose of the organization is to help; it’s not about personal gain or bolstering the image of LBBC.

This summer, I have learned a lot through helping on many projects for the Education department. I feel privileged to have been a part of LBBC’s devoted team. I want to thank everyone at LBBC for making this internship a positive experience for me, and I look forward to seeing LBBC’s future achievements.

Judy is a rising sophomore at Cornell University as a Biology and Society major.You can find more information about LBBC’s educational and support programs at the Living Beyond Breast Cancer website. We want to thank Judy for all of her hard work this summer.

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

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.