Posts Tagged ‘Learning from others’

Your Breast Cancer Experience in Six Words

April 10, 2014

Last fall, we started a breast cancer six-word memoir campaign to share your thoughts and experiences with the disease. Beginning this month, we will restart the project for 2014. Read below to learn more and to see our collection of mini-memoirs from 2013.

Kim Boyer's Six-Word Memoir for Oct. 23, 2013

Kim Boyer’s Six-Word Memoir for Oct. 23, 2013

Everyone has a story. For people with breast cancer, that story can be a roller coaster of complex emotions. As an organization with a vision of a world where no one impacted by breast cancer feels uninformed or alone, we at Living Beyond Breast Cancer provide you with many ways to tell your story – first-person stories and videos, profiles, stories found on this blog and most recently, our breast cancer six-word memoirs. (more…)

Sharing My Experience With DCIS Helped Me Uncover My True Strength

April 2, 2014

Lori KolstadLBBC would like to welcome Lori who is sharing her breast cancer journey with us today. If you or anyone you know has been recently diagnosed with any stage of breast cancer please visit lbbc.org/guides for more information about our Newly Diagnosed publications.

 In an instant, life’s journey took me to an unexpected path.  A routine mammogram changed everything.  On May 9, 2013, Mother’s Day weekend, I was diagnosed with ductal carcinoma in situ (DCIS), often considered the earliest form of breast cancer, in my left breast. It was not a palpable tumor that I could feel with self-exam.  After hearing the biopsy results, I was terrified and in shock.  Breast cancer is not in my family history and I live a healthy lifestyle. I cook balanced meals, grow many of my own vegetables and shop the farmers market.  For the past 25 years, I’ve done cardio and aerobic exercise four times a week.

For five fearful days, I didn’t know how serious it was or what my treatment would involve. When things are uncertain, the mind often finds a way to gravitate to the worst-case scenario. When I met with a breast surgeon, the first thing he said to me was, “You will be okay. You caught this early, this is treatable, and you have options.”   Hearing his words snapped me out of my negative thoughts. I could see a future, I would be okay and I could do what I needed to do.  (more…)

LIVING BEYOND BREAST CANCER HOSTS CONFERENCE

March 21, 2014

Annual-Conference-for-Women-BannerHaverford, PA., Friday, March 14, 2014– Philadelphia-based nonprofit organization Living Beyond Breast Cancer (LBBC) has opened registration for its 8th annual conference for women living with metastatic breast cancer.  The event, Enhancing Your Health and Quality of Life, takes place Saturday, April 26 – Sunday April 27, 2014 at the Philadelphia Marriott West in West Conshohocken, Penn.

Breast cancer is considered metastatic (stage IV) when it spreads from the breast to another part of the body such as the lungs, bones, liver or brain.  There are approximately 152,000 women in the United States currently living with metastatic breast cancer and estimates indicate that advances in treatment and care will push that number to 164,000 by the year 2015.(1)  (more…)

Let’s Be Frank…

March 13, 2014

RondaWalker-27Regular LBBC blogger Ronda Walker Weaver is back, and with a topic not many are willing to discuss so frankly…sex. Read what she has to say about this three letter word and her journey with breast cancer…

Sex – the sometimes scary and painful 3 letter word for many of us cancer survivors. I went through surgeries, chemotherapy, radiation, and all of the horrible side-effects associated with these procedures. Nine months of struggling to stay alive, and now a year post chemo, I am just beginning to recognize myself. Sadly, hormones that may benefit our sex drive certainly affect our cancers (love those aromatase inhibitors), in turn affecting our bodies and affecting our libido. The research I’ve read says that about 70% of women who have had breast cancer treatments have some sort of sexual dysfunction, as opposed to 40% of women without breast cancer. Is there sex after cancer? Once intercourse was exciting, exhilarating, yet now I have a “sexual disorder/problem.” And I didn’t bring this upon myself – ahhh cancer, the gift that keeps on giving!

I have an incredibly loving patient husband who has been an amazing caregiver. And he’s waiting for me to give him the “come-here” eye. Most of the time he’s patient, sometimes he’s frustrated. I try to explain to him that my lack of sex drive is complicated. It’s not about him – really, it’s about me – emotionally and physically. But I’m tired of this entire process being about me!

I’m just beginning to be able to look at my body in the mirror and be OK with my reflection. Lopsided breasts, incisions, discolored skin, weight gain, hair loss, gray circles under my eyes – I’m alive, but there certainly have been sacrifices. Sexuality and femininity are both terms I’m having to redefine – and this has had an impact on our intimacy. (more…)

Poetry By Judy Koza

February 11, 2014

Judy

LBBC’s Writing the Journey is a 6-part workshop series lead by instructor Alysa Cummings designed to help you express and document your thoughts and feelings about your journey with breast cancer. Whether you are newly diagnosed, have recently completed treatment, are years beyond treatment, or are living with metastatic breast cancer, this writing series offers you a safe and creative outlet for processing and coping with your experience. No previous writing experience is necessary! Just ask Judy Koza, a former Writing the Journey participant who has been kind enough to share three of her poems with us today…

Cancer Scripts

I write as I speak, with reservedness
dealing with cancer with utmost control
Seeing the cancer world only through you
And him and her and everyone but me
I have over, or maybe under thought
All things cancer, to the point of blocking
Hiding, pushing, banishing it from me
I have willed it away, oh such restraint
To disconnect the beast from my body
And my everyday mind, not wanting to,
Not daring to connect with the “why me”
What lies on the other side of my fear
Do I peek over the wall to learn, or
Am I destined to recoil forever?

(more…)

Writing The Journey Spring Series Is Here!

January 28, 2014

Cummings-Alysa_mediumWriting can be healing. That’s the big idea behind this spring’s six part Writing the Journey series to be held at the Cherry Hill (NJ) Public Library beginning March 11th and registration is now open! The group will be facilitated by Alysa Cummings, breast cancer survivor and author of Greetings from CancerLand which can be purchased on Amazon.

 

Here she shares an excerpt from her book:

 

Magical Thinking

 

I was thinking as small children think, as if my thoughts or wishes had the power to reverse the narrative, change the outcome.
-Joan Didion, The Year of Magical Thinking

If you’re a cancer survivor like me, you just might be as guilty of it as I once was.

Guilty of magical thinking, that is.

I remember the first time it happened to me; I had been in CancerLand for a few weeks. The initial shock of the words I’m sorry, you have cancer had started wearing off, but ever so slightly. (Trust me on that one).

Slowly but surely I was taking baby steps toward my post-diagnosis “new normal.” Case in point: I could actually carry on a civil conversation with someone without crying my eyes out. This was no small feat. And let the record show that I was eating and sleeping normally again, showing up for work every morning and paying my bills on time. All things considered, we’re talking fairly high-functional here! At least, that was my goal. (more…)

“My mom had breast cancer.”

March 1, 2013

DalyFamilyPhotoforBlog

Drew and Courtney Daly and their boys

Courtney Daly was 37 years old when she was diagnosed with stage I invasive breast cancer, which manifested as two tumors in one breast.  In addition, she also learned that she had DCIS in both breasts. It is now one year since her diagnosis.  

Recently, her son Aidan completed a video project for school.  Let’s have him share his story in his own words. 

Hi, my name is Aidan. I made this video for a school project called “Think Care Act”.  For this project you choose a problem you care about and do something to help. Originally I wanted to raise money for LBBC, but then I decided to create a pamphlet and video for kids my age who might be scared if their moms have cancer. I wanted to help them know that there are other kids out there and people know how they feel.

This video tells the story of how my family and I got through my mom having breast cancer. My mom was diagnosed at age 37. She was one of the 10% of women diagnosed with breast cancer who are under age 40. It was really hard at first knowing my mom had breast cancer. But as we talked about the survivors we knew it got a whole lot easier. My parents were very reassuring and that made me feel better. Throughout the spring and summer, my mom had two surgeries, four chemo treatments, and tons of doctors appointments. She tried her best to come to my baseball games and other special events. She is an awesome-sauce mom!

I hope that this video helps many kids my age, and lots of families. If you are gong tough times right now I hope this video helps you.

Alysa Cummings: Yearly Check-Up

February 27, 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 second submission to Living Beyond Breast Cancer‘s Writer’s Corner.

LBBC_WritersCorner

Yearly Check-Up

Excerpt from Greetings from CancerLand: Writing the Journey to Recovery

Fourteen years later and not much has changed. Not much. Not really.

Starting with the oncologist’s grand entrance.

He knocks twice, opens the door and hurriedly strides into the examining room. His energy speaks volumes (Places to go; patients to see. so many patients; so little time). I am sitting there, a veteran oncology patient, already changed, sitting on the edge of the examining table, a salmon-colored cotton robe wrapped around me.

Welcome to my yearly check-up.Cummings-Alysa_medium

As always, we begin by shaking hands. That’s our ritual. Then it’s my turn to smile and recite my opening line: so how’s my favorite oncologist?

Your only oncologist, to the best of my knowledge, Dr. C replies. There he goes – correcting me, reminding me of our running gag about his need for precision, his attention to detail. In CancerLand, Dr. C is a living legend with hundreds of patients’ medical records stored right in his head.  He won’t take any notes during the exam and somehow never forgets a date, dosage or chronic complaint. Maybe that’s why I’ll never complain about any quirky personality traits of his. An oncologist who’s a bit obsessive is a good thing, don’t you think?

Any lumps, bumps or bruises? Dr. C asks, moving briskly into Act One: The Physical Exam. I lie flat on my back. He modestly opens the gown, uncovering one side at a time, keeping the opposite side hidden, and presses the tips of his fingers in a circular pattern. Then he says the word I’ve been patiently waiting for (perfect) as he finishes with the left side and moves around the table to begin his exam of the right. Twelve years of exams later and like an addict hungry for a fix, I inhale the word (perfect), and savor how good it feels (I’m okay, I’m okay).

But honestly, is this ironic, or what? After all, there might be a short list of politically (and clinically) correct terms that could be used to describe my post-treatment upper body (altered? revised? reconstructed?) But perfect? Hardly.

Does this doctor who deals with so many breast cancer survivors know the impact of his word choice? Or is “perfect” the word this particular oncologist has decided to use with his patients to indicate that there’s no sign of disease? All I know is that perfect is a lovely word, and I can’t wait to hear him say it.

The exam comes to a predictable conclusion with light banter about our personal lives and those acquaintances we have in common, and that’s when I suddenly think of a word that I have to add to our yearly check-up script.

So, tell me, Alysa, Dr. C asks, moving towards the door, ready to conclude the exam. Overall, how was your year?

I’m ready with the perfect answer.

Unremarkable, I say, my year was unremarkable. And I see the doctor cock his head with interest. I have never used this term in our conversations before. Over the years, he has, of course. To describe my CAT scans, bloodwork and Breast MRI results. To report that everything is normal, that there is nothing out of the ordinary.

An unremarkable year, I repeat. No surgeries. I’m hoping that next year turns out to be another unremarkable year. Unremarkable totally works for me.

It certainly does.  And now that I’ve said it out loud, I need to step up to that challenge and day by day make it real until I’m in this examining room again, twelve months from today.

A disease-free reality; in my mind that’s the most remarkable thing I can imagine.

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 and future Writing the Journey creations.  You can purchase your own copy of Greetings from Cancerland, on Amazon.com!

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.

LBBC_WritersCorner

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 Amazon.com!

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 atTheKickingKitchen.com.


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