Archive for the ‘managing emotions during treatment’ Category

Alysa Cummings: Spirit of Spring

February 13, 2013

Alysa Cummings, Group Facilitator for LBBC’s writing workshop series Writing the Journey, shares a seasonal excerpt from her recently published cancer memoir, Greetings from CancerLand,  in February’s first submission to Living Beyond Breast Cancer‘s Writer’s Corner.


Spirit of Spring

Excerpt from Greetings from CancerLand: Writing the Journey to Recovery

Six brown paper bags, stuffed almost to bursting, sit at the bottom of my basement steps. Long empty of groceries, each bag is filled with another sweet necessity entirely. I inspect these bags every time I pass by – even as I struggle with armloads of laundry on my way to the washing machine. I confess I just can’t help myself.

I think about what’s inside these bags and it always makes me smile.

These six brown bags have been hiding in my dark unfinished basement since early November. I remember packing them the night of the first fall frost, using sections of the Sunday Inquirer as insulation from the basement dampness. I look at the bags in my basement day after day, week after week, through the cold winter months and think the same thought over and over again: spring is coming.

It’s all about time, actually. Time passing. Looking forward in time. It’s quite intentional on my part. Ritualistic, even. You see, I look at the six brown paper bags and mentally project myself to springtime.

Maybe it’s just that time of year right now. All these months of cold, grayness and snow; oh yes, I’m more than a little winter weary. Somehow this brown bag ritual serves me, gets me through. Keeps me upbeat and hopeful, believing that spring will arrive and that I will be here to celebrate the season again.

Cummings-Alysa_mediumDuring the third week of March, these six bags will make the trip up the stairs, out of the dark, into the light, through the house and outside to the turned over and weeded perennial beds in the backyard. For the occasion, I plan to eagerly break out a fresh pair of gloves, slip into my most comfortable stained and well-worn gardening sneakers and (drum roll, please) break open the bags.

By mid-March it’s high time to check on the health of my collection of canna bulbs. Some will have rotted, unfortunately, but the majority will be pushing out pale green shoots; ready for planting in my garden. Early spring is the time to get these bulbs back in the ground so that, come July, there will be an amazing field of five foot plus high plants with wide tropical fronds and enough brilliant tomato red colored flowers to stop traffic.

I started this cycle of planting and digging up canna bulbs the summer after my cancer diagnosis. Now (happily) heading into year fifteen of my cancer journey, this bulb-in-the-basement routine is a conscious part of my survivorship strategy. I recommend it highly to my fellow green-thumbed survivors!

Until the buds start peeking out on the trees, until temperatures creep above 32 degrees, keep your heart and spirit as warm as you can. And as we all wait for the official arrival of spring on March 21st, please keep in mind the wise, often quoted words of Hal Borland, “No winter lasts forever, no spring skips its turn. April is a promise that May is bound to keep.”

Living Beyond Breast Cancer will host another Writing the Journey Series this Spring, hosted by Alysa Cummings. And the good news is that there will be two different Writing the Journey groups in Spring 2013 – one in Cherry Hill, NJ and one in Haverford, PA.  Check back to the LBBC Blog for more insights from Alysa Cummings and future Writing the Journey creations.  You can purchase your own copy of Greetings from Cancerland, on!

Rachel Pinkstone-Marx: Book Review and CONTEST GIVEAWAY!

February 1, 2013

Love the recipes from Annette Ramke, CHHC, cancer survivor and co-author of the book, Kicking Cancer in the Kitchen: The Girlfriend’s Cookbook and Guide to Using Real Food to Fight Cancer? Now it’s time share our OWN! Read this review and leave YOUR favorite recipe in the comments section of this post. Annette will pick a winner to receive a FREE copy of  Kicking Cancer in the Kitchen! (Be sure to leave your name & email)

Kicking Cancer in the Kitchen Series

Kicking Cancer in the Kitchen: The Girlfriend’s Cookbook and Guide to Using Real Food to Fight Cancer

Annette Ramke & Kendall Scott

(Review by your faithful blog steward, Rachel!)

When you flip open the cover of Kicking Cancer in the Kitchen you learn that this book is “THE resource for the woman who has been handed the cancer card—and for the one who never wants to get it.” However, as a reader and a writer, I think that it’s categorized even better in their dedication. This book is for:

All those who have faced a major life challenge and kept moving forward with determination, because they just have way to much living left to do.

As I have now had the pleasure to read this thoughtful cookbook and speak with both of the authors, I surely connect every word of this book to that purpose.  Authors Annette Ramke and Kendall Scott are both cancer survivors, so they come equipped with the needs and perspective of women who have been diagnosed with breast cancer. In this sassy and insightful book of recipes and stories, they share real-life knowledge and experience about the healing power of food, along with a look into their journeys with breast cancer. These pages are filled with more than 100 recipes for living a healthy life while living with cancer and easing the symptoms of treatment. This should be considered a favorable resource for women, before, during and after treatment. It also doesn’t hurt to give it a read if you haven’t been diagnosed with cancer, but would like an in depth look at a healthy and disease-preventative diet.

Annette Ramke was 36 when she was first diagnosed with cancer, and while in treatment, became immersed in studying nutrition as a way to fight cancer. She felt better than she ever had, including before getting cancer, and decided to pursue further studies at the Institute for Integrative Nutrition in New York City, which is where she met Kendall. She is now a certified holistic health coach and works with those facing cancer and other diseases. She lives in Philadelphia, PA.

Kendall Scott was diagnosed with cancer at age 27. She then went from a meat & potatoes/ take-out pizza diet to leafy green veggies and whole grains in baby steps, and felt the improvement even while undergoing chemotherapy. After going into remission, she attended the Institute for Integrative Nutrition (IIN) in New York City. She is board certified in holistic health coaching through IIN and the American Association of Drugless Practitioners. Kendall teaches nutrition and cooking classes, leads webinars, presents at wellness events and writes online articles as a nutrition expert. She lives in Maine.

As you break the book down after your first read, you note that you can enjoy two large and very different sections of the book:  a “girlfriend’s guide,” where you learn about Annette and Kendall’s “ups and downs” with diagnosis and treatment, and then a thorough second half filled with recipes. The intentions of the book are to help and comfort woman dealing with the struggles and dietary mazes that come along with treatment, but–don’t get me wrong–Kicking Cancer in the Kitchen is a resource that  would definitely appeal to the health/diet-conscious person, whether they have cancer or not.

Focusing on the “cookbook” portion, the recipes range from being as easy as throwing a few ingredients into a blender for a “Gorgeous Green” or “Superfood” smoothie, to moderate difficulty for your “Seitan Strogonoff.” However, nothing seems out of a Beginner Chef’s reach.  Also, there is a handy section at the top of each recipe that starts you out with bullet points of  the recipe’s “healthy helpers” such as being  “detoxifying,” “immune boosting,” and of course, “constipation kicking!” Our authors also then provide a quick, yet informative introduction of the recipes healthy hints. Right in the center of the book is most likely where you will get lost, as you peruse the beautiful photographs of a selection of the finished products as you choose what meal to make yourself.

This uplifting cookbook/memoir will not let you down, as it is written like a guide coming directly from the heart: girlfriend-style. I’m sure you’ll find it hard to pick out just ONE recipe as your favorite!

Kicking Cancer in the Kitchen has received some amazing press, and it’s only right to let all of you hear what some of these acclaimed authors have to say:

“…a beautiful, delicious, and effective way to improve your health at any time—whether or not you have cancer or any disease. In fact, I recommend that all follow this sort of diet for optimal health!”— Christiane Northrup, M.D., author of the New York Times bestsellers: Women’s Bodies, Women’s Wisdom and The Wisdom of Menopause

“An essential guide to using food as medicine and creating an inhospitable environment for cancer, while delighting your palette and invigorating your senses. Getting well has never been more fun or tasty!” —Mark Hyman, MD, author of the #1 New York Times Bestseller, The Blood Sugar Solution

Kicking Cancer in the Kitchen offers, in one engaging and comprehensive package, what others don’t – first-hand experience, nutritional know-how, girlfriend-style support and tasty recipes – all designed to help kick cancer or keep you healthy. A healthy diet is an integral part of healing and fighting disease, and Annette and Kendall join you, step-by-step, and empower you to discover how easy and delicious eating well can be – starting with your very next meal! —Dr. Steven G. Eisenberg, Co-founder of California Cancer Associates for Research and Excellence and author of Dancing With The Doctor (2013)

Now it’s your turn! Leave your best recipe in the comments section of THIS book review post (along with your name and contact email address) and Annette will choose a winner!

annette1Annette Ramke, CHHC, is a certified health coach and breast cancer survivor. She took an integrative approach to treatment and focused on a whole food, plant-based diet. She coauthored (with Kendall Scott, CHHC), Kicking Cancer in the Kitchen: The Girlfriend’s Cookbook and Guide to Using Real Food to Fight Cancer, released October 2. Learn more

Self-Care is Self-Love

January 11, 2013

Kicking Cancer in the Kitchen Series

We here at Living Beyond Breast Cancer feel it is important that no matter what stage you might be in–newly diagnoses, in-treatment, remission or recovery–health and nutrition are paramount.  Here today at the LBBC blog, we are thrilled to welcome back Annette Ramke,  certified health coach, cancer survivor and co-author of the book, Kicking Cancer in the Kitchen: The Girlfriend’s Cookbook and Guide to Using Real Food to Fight Cancer, as she comes back for her monthly installment providing our readers with her perspective on nourishing the body and soul.

So often we go through life running from one thing to the next. We are busy with work and family responsibilities, putting the needs of partners, children, friends and bosses above our own.

We believe we don’t have the time to take care of ourselves, whether it is moving our bodies with exercise, preparing and eating healthy food, finding moments of balance and stillness in our days or even taking a deep breath and appreciating our bodies for all they do for us day after day, month after month, year after year.


For many of us, a cancer diagnosis is a wakeup call in a number of ways. We have said ourselves, and have heard many of our cancer pals say, “I knew I was burning the candle at both ends. I knew I was stressed and wasn’t taking care of myself,” when speaking of the time prior to getting hit with the Big C news. Suddenly a diagnosis puts everything into glaring perspective. Now it’s not just about having low energy, flabby abs or edgy nerves. It’s about surviving, and the stakes are high.

And while we know that always eating poorly, never exercising or continuously functioning under stress doesn’t cause cancer directly, these elements do significantly affect our health and well-being. They do support or hurt the immune system. They do influence hormone levels. They do contribute to energy, strength and metabolism. They do impinge on our emotions and mental clarity. And they do affect the body’s ability to prevent and heal from disease and cope with conventional medical treatments.

Why not give your body, heart and mind some support, especially if you’re facing cancer?

If you are serious about getting healthy, then right now is the best time to get serious with self-care. You will feel renewed, refreshed, happier and stronger just from taking some time to give your body, mind and soul what it craves. No matter where you are in health and cancer, it’s time to show that amazing body some love!

Here are some of my self-care faves. What are yours?

Sipping hot tea


Reading in my hammock



Cooking wearing a fun apron

Green smoothies



Savoring a little dark chocolate

Singing in the car

Walking, hiking, bicycling – moving

Sunshine and fresh air

Taking a bubble bath


NEWS: The LBBC Blog will offer a review of Annette and Kendall’s Book, Kicking Cancer in the Kitchen: The Girlfriend’s Cookbook and Guide to Using Real Food to Fight Canceras well as a contest to win a your very own copy!

NEXT MONTH: Leave your best recipe in the comments section of the February post reviewing the cookbook, and Annette will choose a winner!

annette1Annette Ramke, CHHC, is a certified health coach and breast cancer survivor. She took an integrative approach to treatment and focused on a whole food, plant-based diet. She coauthored (with Kendall Scott, CHHC), Kicking Cancer in the Kitchen: The Girlfriend’s Cookbook and Guide to Using Real Food to Fight Cancer, released October 2. Learn more

Living Beyond Breast Cancer and Metastatic Breast Cancer Network Release New Publication

January 8, 2013

For Immediate Release:


MBCS: Newly Diagnosed

January 8, 2013; Philadelphia, PA | Living Beyond Breast Cancer (LBBC) and the Metastatic Breast Cancer Network (MBCN) have announced the release of a free publication to help address the needs women have in the first months following a diagnosis of metastatic (stage IV) breast cancer. The Metastatic Breast Cancer Series: Guide for the Newly Diagnosed is the newest title in LBBC’s growing library of Guides to Understanding Breast Cancer, free publications designed specifically to empower women with the information needed to make the best and most informed decisions for themselves and their families when facing a breast cancer diagnosis and considering options for treatment and disease management.

As someone living with metastatic breast cancer, Shirley Mertz knows firsthand of the physical and emotional impact of a stage IV diagnosis. Mertz, the president of MBCN, reflected on her personal experience and commented, “Most new metastatic breast cancer patients feel overwhelmed with anxiety and a loss of control over their lives. This new publication will remind women that knowledge is power, help them find courage to educate themselves about metastatic breast cancer and hopefully open the door to better treatment selection and outcomes.”

The Metastatic Breast Cancer Series: Guide for the Newly Diagnosed is designed to help women navigate the first few days, weeks and months after a first-time, stage IV breast cancer diagnosis or metastatic recurrence. The guide focuses on medical, emotional and practical concerns with the goal of helping readers to understand the biology of metastatic disease, form questions they may need or want to ask and provide available resources that improve emotional and physical wellness.

“Living Beyond Breast Cancer and the Metastatic Breast Cancer Network worked together to create this resource to help women become their best advocates,” said Jean A. Sachs, MSS, MLSP, LBBC’s chief executive officer. “This guide will help women understand the tests and treatments they may undergo and address the impact that metastatic breast cancer can have on emotional well-being.”

Nearly 150,000 people—women and men—are living with metastatic breast cancer in the United States and while a diagnosis of this type is life-changing, advances in research and treatment have made it possible for many to live longer, more fulfilling lives. LBBC and MBCN worked diligently to ensure that this guide was available to help bridge the gap between initial diagnosis and life beyond.

“I wish something like this had been available to me when I was first diagnosed, for my benefit and the benefit of family and friends who had—and still have—so many questions,” says Cindy Colangelo, a member of the consumer advisory committee that reviewed the guide’s content for accuracy. “Hopefully, this guide will help people acknowledge the elephant in the room that no one wants to discuss. Our goal is to provide a greater understanding of metastatic breast cancer and help affected women and families move forward by answering questions, providing information and giving hope.”

In addition to Colangelo and other women living with metastatic breast cancer, the guide was also reviewed by LBBC and MBCN staff, health care professionals, medical and surgical oncologists, social workers, nurses, researchers, and a palliative care specialist, led by William Gradishar, MD, of the Feinberg School of Medicine at Northwestern University.

“As a group facilitator, I’m excited to present this guide to patients who seek wisdom, guidance and support,” says Marie Lavigne, LCSW, OSW-CAs, an oncology social worker and a member of the medical review team. “As with all of LBBC and MBCN’s offerings, it provides a cornerstone to the essential needs of women diagnosed with metastatic breast cancer – clear, honest information, hope and inspiration when they need it the most.”

The Metastatic Breast Cancer Series: Guide for the Newly Diagnosed is divided into six sections written in clear and easy-to-understand language. Individual copies of the guide are free and can be ordered online at or by calling (610) 645-4567. Larger quantities may also be ordered for a small shipping and handling fee. Additional resources can be found through LBBC’s Understanding Guides: Metastatic Breast Cancer Series and through MBCN. LBBC’s titles are: Treatment Options for Today and Tomorrow, Managing Stress and Anxiety, Symptoms and Treatment Side Effects and Understanding Palliative Care. MBCN’s titles are: Diagnosis: Metastatic Breast Cancer…What does it mean for you? and Get the Facts.

About Living Beyond Breast Cancer
For over 20 years, Living Beyond Breast Cancer has been providing educational resources and support services to women of all ages who have been diagnosed with breast cancer. LBBC helps improve the quality of life for these women by empowering them with the information they need to make the best and most informed decisions for themselves and their families. National conferences, monthly teleconferences, regional community meetings, the Guides to Understanding Breast Cancer and a toll-free Survivors’ Helpline are just a few examples of the services that are provided, always at little or no cost.

If someone you know has recently been diagnosed, is in treatment, recovery, years beyond their diagnosis or living with metastatic breast cancer, LBBC can help. For more information, visit, call (610) 645-4567 or download a free copy of Empower, LBBC’s general information brochure.

About Metastatic Breast Cancer Network
The Metastatic Breast Cancer Network, a national, patient-led organization, works to raise awareness of metastatic breast cancer within the breast cancer community and public. MBCN encourages women and men living with the disease to raise their voices to demand support, resources and more research for metastatic disease.
MBCN provides education and information to metastatic people and their caregivers. Visit or call (888) 500-0370 to access education, support and advocacy resources.

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

November 26, 2012

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

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

November 5, 2012

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

October 25, 2012

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

October 19, 2012

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  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, 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

October 2, 2012

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 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)

September 26, 2012

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.


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