Julie Anne Mauro: “Strength in the Face of Great Uncertainty”

Sometimes getting out your feelings can be just the therapy you need. Living Beyond Breast Cancer offers a “Writing the Journey” Seasonal Writing Series that offers instruction and encouragement for women affected by breast cancer to use this creative outlet to express themselves. On this second installment of the LBBC Blog‘s Writer’s Corner, Julie Anne Mauro shares who own musing on diagnosis and LIVING with metastatic disease.

I Quit Cancer – April 30, 2012 – after an extensive month of tests and trying to get on a drug trial and finally getting on a treatment that is working.

I quit cancer

Seriously, I quit

It’s not a fun job

It certainly doesn’t pay well

And it just takes up too much of my time

I’m tired of Pink

I’m tired of Anti-pink

I’m tired of just being a number

Tired of being a patient

Tired of blood draws and infusions

Tired of looking in the mirror and not seeing myself anymore

Just the battle scars

Just the bitterness

Tired of thinking, will this be the last time I ……

*          *          *          *          *

Untitled – August  7, 2012

Can you do something more than just a prayer?

But fight for me

Fight for me

Show the world that I was once there

Fight for me

Oh fight for me

Let me know that somebody really cares

Fight for me

Oh fight for me

Show me there’s more than blank and empty stares

Oh fight for me

Oh fight for me

Even when I’m weary and on my last breath

Fight for me

Please fight for me

*          *          *          *          *

Julie Anne is a recent transplant to Arizona from New Jersey,  married, and a mother of 2 boys (8 and 14). In July of 2009, a week before her 44th birthday, she was diagnosed with HER2+ breast cancer. After chemotherapy, a bi-lateral mastectomy and radiation, in May of 2010 her came up clean. She “beat cancer.” One month later, she found a lump in her chest wall–her cancer had spread to the lymphatic system and she was diagnosed Stage IV.  Since then the cancer has spread to her lungs, but she is still here and living strong every day with Metastatic disease.  Her motto is “Strength in the face of great uncertainty.”  Writing has been a great release for her and a way to express herself living in a world of unknowns.

Visit the LBBC Events Page for more information on the “Writing the Journey” Fall Writing Series

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.

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.

Randi Rentz – Getting Back to the New Normal

On Tuesday, September 11, 2012, Living Beyond Breast Cancer will host a free teleconference, “Beyond Treatment: Understanding Your New Normal,” featuring Susan Hong, MD, MPH, FACP. The staff at LBBC often hears  from survivors that getting back to their regular lives can be challenging after treatment and the creation of a “new normal” is key to moving on. Join the LBBC Blog in welcoming back Randi Rentz, as she shares her “new normal.”

Normal. What is the “new normal” after breast cancer? Four years after completing my treatment, I am at it again, launching a web site that has taken many years to get underway, working full-time as a special education teacher in the area of Asperger’s, and consulting in the evenings. Again I’m risking financial security, working long hours, and insisting on having fun.

The point is, no matter what happens, I keep going on, making adjustments that fit my life. I like my life. While I was traveling in the scary tunnel of “Cancerville,” I did what most women do—I tried to maintain the normal routine of my life as much as possible. When a friend emailed me during my treatment, she wrote I was “crazy as ever,” which made me overjoyed.

Meanwhile, the world outside my “pink bubble” was going on as it always had. It was fast paced, taxing, demanding, and it was pretty draining. I have to admit, when I was finally able to rejoin it, it was pretty liberating.

I was thrilled to be able to go back to many of the same issues I’ve been dealing with for my whole life. I can say that I do have a greater perspective on what’s really important. I still sweat the small stuff. That’s just who I am. In my life, the small stuff adds up to the big picture that is my life and existence.

Although I may be in a new, slightly modified package, I am still whole, and unwilling to waste my time. This, too, is the same attitude I had before breast cancer. I was basically a happy positive person before breast cancer, and after it. Breast cancer just spelled out who and what I am.

Like most women I’ve spoken to, I can honestly say I eat better now (although I still eat desserts). I eat organic foods whenever possible, and I don’t eat fish full of chemicals or mercury. I never touch dairy products that were produced using hormones. And I try to avoid cosmetics that contain parabens, which mimic estrogen and just can’t be good for you.

Okay, I’ll admit I still use dye to color my hair and nail polish, both of which have evil ingredients in them, but I’m doing what I can. I take vitamins, limit my alcohol intake and exercise every day for an hour.

If you know me, that last part about regular exercise, is a total fabrication. But I do take yoga and/or a barre class when I can, and I try to do cardio two to three times a week.

Shocked?  Yeah, me too.

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.

Susan Navissi: Feelings from Afar

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.”

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.