Putting "it" (a.k.a. your story) Out There

We seem to get these requests now and then so I figured I would address this most recent question about how to publish your story.

Night table
From Butterfly Kisses and Wishes on Wings:
When someone you love has cancer... a hopeful, helpful book for kids
©2012McVicker&Hersh,LLC

I am currently a 2nd year graduate student within the School of Public Health at the University of Michigan. I am very much interested in writing a book  similar to your "Butterfly Kisses and Wishes on Wings" book. I am blessed to know of a woman who is currently battling her second trail of breast cancer. During her second ordeal with this deadly disease, she learned that the cancer as spread to her brain. While she has every reason in the world to feel depressed and angry, she is still strong, encouraging and one one of the the most joyous individuals you could ever have the pleasure of meeting. I have proposed to her the idea of writing a book and she had agreed. I would like to know if you would honor me by sharing how you went about setting the tone for your book. Also how you went about finding a publisher and illustrator who had your best interest at heart. Again I am completely open to any piece of information that you may have. Thank you for your time and I look forward to hearing from you soon!!!!

Everyone has a story. The question is will other people find it of value and are you willing to do the work it takes to not only create (write, edit, illustrate, design and publish) the story, but then market it?  

To address the first question of setting the tone of the book. That is a very personal thing, meaning- who is your audience? In our case, I needed the words to tell my two young children about my cancer diagnosis,and Ellen had years of experience working with young children. That set our tone. We knew we wanted the language to be clear and easy to understand, as well as compassionate and empowering for children. We wanted my story - and our book to be a gift to other families.

In addition to finding an illustrator you need a book designer. Someone who can help you bring your vision to fruition. It's like finding the right producer for your music or your song. 

Self publishing (here is one of many links from a search) is big business these days. Once considered Vanity Presses and frowned upon, more and more people are doing it and there are many websites that will guide you through the process- for a fee.  So do your homework. Some will help you find an illustrator, may have a program to help you design your book, and even market your book for you. 

Our Team
Ellen (bottom center) and I, (top right) with our team of butterflies who helped
create and launch our book.
TOP-Dr. Beth Deutch (wrote forward, helped launch book) Claudia Ansorge- helped with title and marketing, Nanci
Bottom- Leslie Nicholson- editing, Ellen, Fran Waldmann- book designer

Ellen and I were fortunate to find a great team of people who believed in our story and wanted to help us.  They either did it for a nominal fee, traded for art (mine) or donated their time.  All were extremely generous. Many more have helped us along the way.  Marketing as been a learning experience- and encompasses many various grass roots methods. It was only recently (after 6 years, 5 printings and a Spanish edition) that we were approached and signed with  Montse Cortazar a literary agent who will be representing our book world wide.  The journey continues.

We wish you well on yours.

Disconnect on the screen and in the world

Snuggle Me
From Butterfly Kisses and Wishes on Wings
©2012McVicker&Hersh, LLC

Like you, the tragic event of this past friday at Sandy Hook Elementary School in Newtown, CT weighs heavy on my heart and mind. This senseless violent act, shatters all the families who lost their loved ones as well as the community- who will never be the same. The collective grief which President Obama addressed in his speech last night conveys the love and support we are all sending this small town. The outcry of everyone- parents, sisters, brothers- demonstrates our ability to love and be compassionate to one another. 

So where is the disconnect?  Why is our nation plagued with so many of these horrific actions taken by young men - all children of parents who are also dealing with loss and grief?

This is the cancer that no one is talking about. Violence, that is permeating our culture in the media and entertainment in the form of video games.  My kids claim they are the only ones of their friends who don't have Black Ops, Call of Duty, Halo... etc.  I know that isn't true, but I do know that our household is in the minority.

Many times over the years when my sons were younger and I would drop them off at a friend's home to play I would ask the parent that the boys not play any of those violent video games. Often, the mom would confide in me that she doesn't like those games either but that the father or dad thinks they are fine, or likes to play them with their son.  It hasn't been easy keeping them out of the house. It's an ongoing conversation but one that I stand my ground on.  I don't want that violence in my home. Period. Thankfully, my husband and I are on the same page. 

But maybe this is where we as parents, aunts, uncles, cousins, and friends begin to make the change that President Obama spoke of when he said last night- 

"...We're not doing enough, and we will have to change."

How about thinking about what is under your tree this year or on your child's screen? 

Let's raise our sons and daughters to be compassionate, resilient and non violent one less video game at a time.

Butterflies in the Sisterhood

One of the most powerful gifts that can come out of a cancer experience are the people you meet along the way.  The "C" Club or the "Sisterhood" of breast cancer survivors, is not one that any of us choose, but once initiated, we embraced with open arms of compassion, practical advice or a knowing hug.  Within and without, there are numerous Angels -those wonderful souls who seem heaven sent to help or watch over you, and Butterflies, beautiful kind beings who are with you on your journey, who come to us in all sorts of ways.

Joining the Sisterhood, 2005
Encaustic, collage on wood
©2012NanciHersh

One such butterfly who I have shared my journey with is Maria Carzia Boyes.  I first met Maria - through a phone conversation when I heard from someone close to each of us that she needed a copy of our book to share with her young daughter Eva.  Later, when Maria was going through her treatment, I was diagnosed with breast cancer for the second time. And unlike the first diagnosis 8 years ago, I would be facing chemo and radiation myself.  Maria and I would often check in with each other to see how it was going, what to expect and for some mutual support. We were able to chat easily and enjoyed checking in with each other, on the phone, email and FB- but had never met in person. 

Maria with her daughter Eva at
the Susan G. Komen Race for the Cure 2012

UNTIL I was in NY at my surgeons office for a follow up earlier this year.   After my examination I was asked to return to the waiting room to schedule a future appointment.  Lost in thought, I heard my name called and went up and sat at the desk when all of a sudden a woman with an electric smile comes up to me and says, "Nanci Hersh?" Never having met Maria in person I didn't recognize her, but coincidentally we had the same breast surgeon and had an appointment the same day.  Within moments we were hugging and continue to be cheerleaders for each other.  In October Maria was interviewed in Central Jersey. Com and now, you too can meet Maria and see what a beautiful butterfly truly looks like!

Eva, Maria and Jim


Who has been a butterfly in your journey?

Happy & Healthy

Tonight starts Rosh Hashana, the Jewish New Year.

The following prayer was composed by the students at Temple Beth El Religious School where my son is a student.

As our grandmother used to say... "from your lips to God's ears..."

Prayers for ourselvesAvinu malkenu (Our creator, our sovereign),

help us make more friends
help us get good grades
teach us to respect our parents
teach us to see things from other people’s perspectives
help us to stand up for what is right
show me how I can help the community
help us to make the world happy
keep us healthy and safe

Avinu malkenu, honenu va’anenu ki eyn banu ma’asim
asey imanu tzedakah vahesed vehoshi’enu
Prayers for our familiesAvinu malkenu,

help us spend more time together
grant us peace and quiet
help us to have a home
help us to stay happy and healthy
keep us safe
help us to get along better
help us to have jobs
help us to love one another

Avinu malkenu, honenu va’anenu ki eyn banu ma’asim
asey imanu tzedakah vahesed vehoshi’enu
Prayers for the worldAvinu malkenu,

teach all people to pick up their trash
inspire everyone to be nice to the world
make sure everyone is okay
give everyone enough to eat
teach everyone to treat each other nicely and equally
grant everyone a bright future
let there be peace
free all people
let everyone be who they are and be accepted for it

Avinu malkenu, honenu va’anenu ki eyn banu ma’asim
asey imanu tzedakah vahesed vehoshi’enu

Losing my Perfection(ism)

One Year ago...
According to my husband, I do have a perfectly shaped head!

I should be good at this, which is a funny way to start a blog post about perfection(ism)- with a "should"- but I guess that's the point. 

With cancer treatments behind me, and all visible signs of the past year and a half no longer front and center, the word survivor seems to be hovering uncomfortably around me. My friend and yoga buddy, Evelyn Zak recently just sent me Susan Gubar's excellent blog post Not a Cancer Survivor from the NYTimes Online. Like Susan and the women in her article, I too, cringe at that term for many, if not all of her reasons.

In particular, the part about being heroic.  We are part of a society where we have, as Susan Gubar states "An American propensity to circulate stories of valiant individuals triumphing over great odds must make people coping with recurrent, chronic or terminal illness feel like duds."  And more often than not these stories include not only triumphing over great odds but often changing their lives, or reinventing themselves, coming out the other side reborn with a new appreciation and outlook on life.

And that's where the perfection(ism) comes in. The need (my need) to be the perfect survivor. The one who is (always) grateful, strong, resilient and inspiring to others as I lose all my bad habits (like perfectionism) and become a modern day Jewish Mother Teresa, while making art and surfing around the world homeschooling my children and giving them a real life meaningful education. 

Often I am or can be any of those things, but not always, and not at the same time. Which makes me wonder if I am a "good enough" survivor.  When I tearfully shared this with another friend recently, we had a good laugh through my tears- at the absurdity of it all. 

So as I disclaim the title Survivor I can give myself permission to lose my perfection(ism) and appreciate the fact that we are all learning how to do this, whatever this is.  

Lose the lable, find a moment of peace. perhaps.

and now that head is covered in waves!

Talking to Kids about Cancer

Why we do what we do...  our hearts are filled with gratitude that we could help someone, as so many of you have helped me.

I received this email from Ashlie Krejci, a friend of a friend, a "sister" who I have yet to meet. I had heard that Ashlie needed our book, surgery was imminent and she didn't know how to tell her two young sons about her breast cancer. (sound familiar?- all too- for me!) Ashlie is now home recovering and took the time to send me this email today.  

Nate's drawing from
Butterfly Kisses and Wishes on Wings: When someone you love has cancer... a hopeful, helpful book for kids
©2012McVicker&Hersh, LLC

Thank you so very much for this beautiful gift.  I was overwhelmed with gratitude and tears that a stranger would go to such length to get this book for us.

My son has asked us to read it to him every night.  It has helped us explain what we thought would be so impossible to a 4 year old.  Now he talks about "cells" all day long.  He says someday my cells will be good again and it makes me so happy that he understands!  He demonstrates his understanding by saying that his cells are pink and healthy like Daddy and Chase's and that mine are black and sick.  He then goes on to say that he is sad mine are so sick but that someday my cells will be pink and good again too.  I feel like crying every time he says this but instead I smile because I realize that because he understands what's going on he is able to verbalize his feelings and not be afraid.  He has also started drawing a lot of his emotions after seeing your pictures.  He draws me with no hair and then draws an assortment of hats that he says we can cut out and tape to my bald head when the medicine starts to make my hair fall out. 

I never could have imagined a four year old boy being able to grasp these concepts with such maturity-but YOU helped him with that!

I will be forever grateful to you and this book!

                                                                                  Ashlie Krejci

My heart sings.

Survivorship: Owning Up

This past weekend was the AMC Relay for Life at Unionville High School, PA- (The local paper in this article cited Nanci as the author, not illustrator, and spells Hersh wrong, but- hey they mentioned our book Butterfly Kisses and Wishes on Wings!)

The water and also bead station, where you took a bead
and put it on a string for every lap you took

Survivor

nouna person who survives, esp. a person remaining alive after an event in which others have died : the sole survivor of the massacre.• a person who copes well with difficulties in their life: : she is a born survivor.

It was a first for me. I had been a part of cancer awareness events- either speaking about our book, or on the sidelines- signing and selling copies. But had yet to walk the walk, i.e. take a Survivor's Lap.

Maybe it is the word survivor.  We all face challenges and I didn't think I was really any different. But it has been a heck of a year and I was there because my sons, Griffin and Nate wanted to be there- supporting others- and me.  They were there with their own teams, raising money, and walking and walking- for me. I was proud, honored, and touched, and so I was there, too, owning up.  

The Longwood Rotary did a great job organizing the event; fun activities round the clock and perfect weather to boot!

Had a great time on Friday night meeting some amazing people, talking story as they say in Hawaii, and yes selling books with a portion going back to Relay for Life.  I went home around 10 pm but Griffin, Nate and friends spent the night.  I found a couple of very tired boys in the morning...

Nate's tiny head hidden in plaid

Griffin opted to sleep in the middle of the track field-
with two of his teammates

My buddy Kathy Hrenko, Executive Director of  Kennett After School Association After-the-Bell
and Longwood Rotary member in charge of Survivorship
taking some peaceful morning laps

Shane and Nate at the Community Breakfast
which concluded the Relay for Life

 Pancakes at the end of a long night seem to be the perfect icing on the cake!

Thanks for Longwood Rotary and the American Cancer Society for your efforts in bringing the community together to raise money, awareness and offer support to all of us.

Love Letter

Yes... we LOVE getting these letters...

Backpack
Butterfly Kisses and Wishes on Wings: When someone you love has cancer... a hopeful, helpful book for kids
©2012McVicker&Hersh,LLC

 

"Your book has made a difference for the children of the patients.  We give them out so that they can read the story and relate to it.  We are getting more and more children and grandchildren here to visit or stay with their loved one.  We have a special program that is dedicated to the children and give each child their own backpack with age specific activities and books in each one.  We know that each day can seem like a week when you are waiting around for all the doctor’s appointments."

Kind regards,
John

 

John WilsonMaterials Management/Purchasing Agent

Cancer Treatment Centers of America®

 

 

 

Sue Miller Day of Caring

Last week, Ellen brought Butterfly Kisses and  Wishes on Wings to the Sue Miller Day of Caring in her home state of Colorado- Making our first appearance at this event to benefit breast cancer awareness.

Ellen at our table... butterflies abound!

The need for our book and the heartwarming response I received at the event continues to remind me why Nanci and I created Butterfly Kisses and Wishes on Wings.  The biggest hit was probably our new note cards with the image of the Nanci's Butterfly Kiss on it.  

Butterfly Kiss Notecard
Sold in set of 6
$8.00 set

Meeting all the other wonderful organizations that work together to raise awareness, educate, or supply products for cancer patients  made the day memorable.  My very favorite part was seeing Dr. Sami Diab again.  Dr. Diab was my friend Jennifer's oncologist (she is my friend who told me not to be sad when she passed.... that each time I saw a butterfly, it would be her.  That's when the butterfly came to be in our a story.)  


How pleased I was that Dr. Diab remembered me... and our book.  


I am truly blessed with all the many people I have met through our book.... yes indeed, truly blessed.

It's All about Showing Up

Some have talked the talk and some have walked the walk. 

There is also something to be said about Running the Run. There are any number of events that raise awareness, generate financial contribution and bring community together to support an individual or collective in need. There is power- and fun in showing up.

 

This year, thanks to my son Griffin and his friends who signed up for ACS Relay for Life at Unionville, HS on June 8 & 9th, and my friend Kathy Hrenko who's coordinating the event, 

I have decided to show up and take a lap with other survivor's.

I will also be there with wings, wishes on wings that is, signing and selling Butterfly Kisses books to benefit American Cancer Society.

Margaret Zuccotti
holding her record
Susan G. Komen
Philadelphia Race for the Cure

Margaret Zuccotti, creator and founder of Reading for Reassurance,  has crossed the finish line FIRST for the survivors division in the Komen Philadelphia Race for the Cure- for 4 years in a row.  This Sunday she will be going for her 5th!  A woman with a big heart- and strong lungs and legs- and some fierce determination thrown in.

Running for Maria
Ava, Maria Boyes & Jim
Race for the Cure NJ, May 6, 2012

Daughter, Ava and husband, Jim Boyes showing off their pink for mom and wife, Maria Boyes.

Who are you running for this year?

Open House for Butterflies

Strolling through downtown Kennett Square last weekend, a small book in the window of RLD Books

lured me in to the shop.

A page from
Open House for Butterflies
by Ruth Krauss
pictures by Maurice Sendak
Harper & Row, Publishers ©1960

Open House for Butterflies written by Ruth Krauss and illustrated by Maurice Sendak.  I loved the title, of course,  the work of Maurice Sendak is incomparable, and the simple childlike insight of Ruth Krauss with phrases like "Lapkin is a good word to know," was all I needed. The book came home with me.

So glad it did.

Maurice Sendak passed away today.  We will miss you Maurice.  May you find peace where the wild things are...

Where DID Your Mojo Go?

This post is for the women and moms out there wondering... Where'd My Mojo Go?

Last week I attended a lecture with that title at Christiana Care as part of their Celebrating Women's Health Lecture Series.

   The evening began with a performance by Tapestry Tribal, 
                   a belly dance troupe led by Bonnie, one of 
Dr. Whitney's staff nurses

Gynecologist Estelle Whitney, M.D.  was the guest speaker for the evening. Her talk began with a short story reading of erotica (definately set the tone) followed by a slide show that offered everything from the benefits of sexual activity to the physical and emotional factors that affect our ability to enjoy an active healthy sex life. She ended with a guided meditation for relaxation.  It was informative in an open, relaxed, fun setting.

Where ever you are with your treatment, or your life it's good to know that you are not alone and when you are ready, there are wonderful resources out there.

Here's a good place to start:
Seven Weeks to Better Sex  by Domeena C. Renshaw
Pleasure: A Woman's Guide to Getting the Sex you Want, Need and Deserve by Dr. Hilda Hutcherson
American Association of Sex Education Counselors and Therapists
Passion Parties
Hot Movies for Her

You go girl!

Save the Dates - May Calendar for BK WOW

April Showers bring May Flowers...

Happy May Day!
This month brings two new events for Ellen and I to sign and share our books both on May 12.

Look for Ellen at the Sue Miller Day of Caring for Breast Cancer Awareness
in Denver, CO

Saturday, May 12, 2012

Denver Marriott Tech Center

4900 S. Syracuse St., Denver, CO 80237

8:00 A.M. – 2:00 P.M.

Find Nanci at Hockessin Book Shelf
7179 Lancaster Pike
Hockessin, DE
302-235-7665
hockessinbookshelf@verizon.net

Buy a Butterfly Wish in honor or memory of someone you love...
and pay it forward

Ellen will be at the Sue Miller Day of Caring in Denver, and Nanci will be at the Hockessin Book Shelf signing books and selling Butterfly Wishes for $1.00 to benefit Christiana Care's Cancer Special Needs Fund at the Helen F. Graham Cancer Center.

Glad to Help

This colorful Thank you was recently received all the way from the Department of Child Psychiatry at the Chris Hani Baragwanath Hospital in Johannesburg, South Africa after we received the initial request below.

Thank you so so so much for all those books.  I finally collected the parcel at the end of last week.  You are absolute stars.  I’m taking the books down to the ward today.

 

Wow!

 

Megan

Your book and resources look amazing. I am a clinical psychologist working in a large government hospital in a very impoverished community in South Africa. I run groups for kiddies with cancer as well as the parents of these kiddies (from birth to 18 years). The unit currently has no \'story\' that can be used to explain cancer to the kiddies, or for us to share with the parents to help them to explain cancer to their kiddies and, in general, resources are very scant. Any donations of your products or offers of special rates on them would be much appreciated. 


Kind regards
Megan Jones
Community Service Clinical Psychology
Department of Child Psychiatry
Chris Hani Baragwanath Hospital, Johannesburg, South Africa 




We love that our book has found its way to Africa and feel blessed that we too, can be butterflies!

"My pictures always make her smile..."
Butterfly Kisses and Wishes on Wings:
When someone you love has cancer... a hopeful, helpful book for kids
©2012McVicker&Hersh, LLC

Lessons Learned

Some conversations - or lessons learned are never easy.

"She said it's hard to explain.
I asked her to try anyway."
Butterfly Kisses and Wishes on Wings: When someone you love has cancer... a hopeful, helpful book for kids
©2012McVicker&Hersh,LLC

My boys attended their first funeral this past weekend. We had a week or two to prepare them that their aunt was in the hospital and that there was a strong chance that she may not pull through.

The real shock was that our sister-in-law was so sick. Apparently, had been for a while. She mentioned some tests to a couple of us, but her adult sons were not aware of all this. These past three weeks, for both of them, have been a crash course in navigating the medical and legal fields, all while dealing with their own shock, sense of overwhelm, grief, and anger, at having been unaware of what was going on with their mom.

Some conversations are never easy, but we need to give our children, at any age, a place to ask questions, express fears and concerns and feel a part of our lives. While we can.

As parents, we want to "protect" our children.  The reality is that we can't. We can only show our love by empowering them with tools that foster resilience and trust. Knowing what and how much to tell our children will vary depending on age and situation, but the lesson learned this past weekend is that it is a conversation that needs to happen, before it's too late.

How much have you told your children about a challenging illness or situation in your family? 

For links to resources and support, please visit our Butterfly Kisses Book website
In addition, Supporting Kidds offers a number of programs and information for grief support for children and their families.

Putting it out There- Saline or Silicone?

We are all about supporting children and their families when someone they love has cancer.

This post, is for the moms out there facing cancer and all those decisions that keep coming at us.

You've had the mastectomy and decided to go forward with the reconstruction, survived the pain, the drains, and then the discomfort of the tissue expanders.  Now you face the decision- saline or silicone implants?

They were Starting to Sag, anyway
Encaustic, collage on wood
©2012NanciHersh

http://www.implantinfo.com/breast_implants/silicone_gel_breast_implants/introduction_saline_vs_silicone_breast_implants.aspx Google away my friends, be informed, then read on...

Following my bilateral mastectomy 8 and a half years ago I went with silicone implants. I felt comfortable with my decision,  They did look good, and they felt - well, I honestly can't remember.

Regardless, nothing held me back- I swam, surfed, practiced yoga and lived my beautiful life.

Last year when I learned that I had a second cancer in residual breast tissue again on the right side, I went for a PET Scan. That showed unsual findings on the "other" side/breast- a large "hot spot." They were ready to biopsy that side as well.  Thankfully, a friend and doctor showed my disk and reports to a fellow radiologist who specializes in reading scans.  He felt confident that it was a ruptured implant and that an inasive biopsy on that side was not necessary. He was indeed correct, my silicone implant had ruptured and my chest wall was inflamed- "angry and red" is how my plastic surgeon described it.

Long story short... following the surgery last April to removed the cancerous tissue and node I went with Saline implants.  Honestly, they too, look good, they feel fine and more importantly, I believe that they pose less of a risk for a breast cancer patient.  One less thing to think about.

There you go...  what is your experience or choice- saline or silicone?

PS... I just realized that my surgery was a year ago- tomorrow !!!!... feeling blessed for another year and feeling good.

Books on WINGS

Some crazy weather here on the east coast. Snow back in October and temperatures reaching 80 mid March. Go figure. One thing that Ellen and I do notice however, regardless of Mother Nature and unseasonal weather fluctuation, is that Butterflies are everywhere!

Snow White Buds Blooming

Margaret Zuccotti is one such beautiful soul who has given our book WINGS. Diagnosed with Stage 4 inflammatory breast cancer in 2006, she discovered a lump while nursing her infant son.  Thus began the path of surgery, treatment and advocacy for this wife, mother of 3, daughter, sister, friend, athlete (she was the first survivor to cross the finish line at the Susan G. Komen Race for the Cure in Philadelphia,  and now, butterfly.

Margaret and her kids

An educator by profession, Margaret created the Louise S. Mauran Book Fund in honor of her mother to support families in the Fox Chase Cancer Center community where she receives treatment.  Margaret contacted us after she found our book online and shared Butterfly Kisses and Wishes on Wings with other families facing cancer. We are honored to be a part of her fund and at the top of her list!

In addition, Margaret brought copies of our books, including our new Spanish edition to the recent C4YW conference in New Orleans last month as part of her brand new Reading for Reassurance initiative.  Hope you'll visit her Facebook page and click LIKE to keep on top of where she is taking this.

Thank you Margaret!

I feel that 'BK WOW' is a wonderful story because it touches on many of the challenges faced by families dealing with cancer. Why do you have cancer? Can I catch your cancer? Will you be ok? Is it alright that I am scared? These questions are asked by children of all ages and the book addresses them beautifully. It is great to find a resource that comforts the reader and the listener all at the same time. 

Margaret Zuccotti

Who is a butterfly in your life?  Who has helped you help others?