Hear My Voice: Dealing With the ‘What Ifs’ Before and After ‘I Do’

LBBC blog pic_AyannaAyanna Phillips writes about how she and her husband overcame the what-ifs and lived their lives together after her diagnosis with metastatic breast cancer.

 

“To join with you and to share with you, all that is to come…”

While going over our wedding vows, this was the part that was hardest for me. What a loaded statement given our circumstances. There were moments while I was planning our wedding that I was consumed with joy knowing that I had found my soul mate. I never thought I would love so deeply, trust so willingly and laugh so hard. There were also extremely difficult moments when I just about drove myself insane. What if the pain of my most current metastasis to my bones prevented me from walking gracefully down the aisle as I had dreamed? (I had acquired quite a limp at the start of the summer because of the disease in my hip.) And the one that kept me sleepless in bed a few nights after slaving over DIY projects and the perfect shade of pink…What if I get sick and we have to cancel the wedding?

Trying to balance my diagnosis and my thoughts on forever didn’t just start with our wedding. I was diagnosed just one month after our engagement. While most women are basking in the glow of their recent engagement and diving head first into the sea of planning, I was forced to put all thoughts of a wedding on the back burner and focus on my health. It felt like all the things we planned to do might never come to be. The what-ifs that come with a metastatic breast cancer diagnosis can rival the worst day in treatment sometimes. Continue reading

Do You Have Any Idea How Beautiful You Are?

Musser_Barbara_2014Breast cancer can drum up many complex emotions and thoughts for those who are newly diagnosed, especially around body image. Barbara Musser, CEO and founder of Sexy After Cancer, writes about the importance of defining your own beauty and invites you to learn how to do this by joining us for our free webinar at noon ET/11 a.m. CT on Tuesday, May 20, held in partnership with Susan G. Komen of Greater Kansas City

Dealing with a breast cancer diagnosis and treatment is a big challenge that goes on for quite a while. On top of that, it’s easy to feel like less of a woman, especially with altered or removed breasts, instant menopause resulting from chemo or hormonal therapies and other physical changes that can happen.  There’s not a lot of conversation about our body image, self-esteem and self-love and our intimate and sexual lives. And yet these are the subjects that have the most to do with the quality of our lives.

It’s the elephant in the room that no one mentions. Partly it’s because these aren’t easy topics to broach and partly because we don’t know to ask about them if we don’t know what to expect. You may have experienced this spiral. Continue reading

A Different Type of Survivor

Patricia Brett Patricia Brett, designer and founder of Veronica Brett, a luxury line of swimwear made specifically for women with breast cancer and those who have had risk-reducing mastectomies, will be blogging throughout the summer for LBBC  about her history with breast cancer and giving tips on how to enjoy the warmer months and feel sexy on the beach. Here, as an introduction, she shares her story about testing positive for the BRCA1 gene in conjunction with a significant family history of breast cancer.

I’m not a breast cancer survivor. I’ve never had breast cancer and I hope and pray I never hear the words “You have cancer”.

Yet for someone who has never been diagnosed with breast cancer I certainly have some pretty significant scars across the middle of my chest. Why? I’m a “previvor”.

Like Angelina Jolie and so many courageous, yet unknown women before her, I elected to remove my breasts to save my life.

At the time of my risk-reducing bilateral mastectomy back in January 2003 (has it really been 10 years?) people thought I was nuts. They didn’t understand why a woman with “healthy breasts” would ever have them removed. Healthy is a relative term.

When I was a kid growing up, I lost three aunts to breast cancer. I always thought it was some type of pollution in the water or the land back in Ohio where my father and his family were raised. By the time I was 18 he had lost three of his six sisters to breast cancer.

It turns out it wasn’t the water but the genes that contributed to their cancers. As Angelina referred to them in her NY Times Op Ed piece when she became public about her surgery, “faulty genes”. For me the faulty gene has a name: BRCA1, and the mutation has a number: Q1200X.

Like survivors who know the specifics of their diagnosis (stage 1, ER+, HER2-) I know my number, Q1200X. It’s that specific mutation on that particular gene that gave me an 85% chance of getting breast cancer and a 55% risk of ovarian cancer.

But it wasn’t the gene alone. What also contributed to my risk was family history. Not only did I loose three aunts to breast cancer, my sister and many first cousins have been diagnosed with breast cancer. In total honesty I have now lost count, but the actual number is something greater than six. One cousin has also been diagnosed with ovarian cancer. Fortunately for us, all have survived.

So yes, the breast went in 2003, the ovaries back in 2007 (a significantly harder surgery than I ever imagined, story to be told at another time).

And now, I call myself a “previvor”, a person who has survived the increased risk of inherited breast or ovarian cancer, a term coined by FORCE, Facing Our Risk of Cancer Empowered, a group dedicated to providing information to women at risk of these cancers.

I’ve never called myself a “survivor”. I don’t know what it means to hear those words or to face that diagnosis. Yet so many women I have met over the years say I am a survivor. When I attended my first “young survivor” conference (now known as C4YW) in Jacksonville in 2008, they told me I was a survivor. “You’ve had four surgeries in two years and a double mastectomy, of course you’re a survivor!” I was told by one amazing young woman sporting her multi colored leis indicating her status as a five-year breast cancer survivor.

I can’t possibly imagine what it is like to learn you have cancer and I believe I have done everything I can to make certain I never hear the words “you have cancer” (full disclosure- I could still cut out the red meat and get more exercise!)

But I will never call myself a survivor. Out of respect to all the women and men who wear that mantle, I will always stay the simple “previvor”.

You’ll hear from me from time to time as I have been invited to blog for LBBC.

I’ll be sharing my story, along with fashion tips on surviving beautifully including some posts dedicated to swimwear for survivors. If you have questions for me or suggestions for blogs, I can be reached at: pbrett@veronicabrett.com

Stay healthy and sexy-

Patricia

Patricia Brett is the Founder & Designer of Veronica Brett, the first luxury collection of swimwear created especially for breast cancer survivors. After loosing three aunts to breast cancer, watching her sister battle the disease, and having her own bilateral mastectomy, Patricia created Veronica Brett to empower women to look and feel their best again.  Patricia has been profiled in O, The Oprah Magazine, Harper’s BAZAAR, CNNMoney.com, ABC evening news, as well as numerous fashion publications. She has a Master of Architecture from Yale University and resides in Manhattan with her husband and son.

I Talk To Strangers, You Should Too!

randi rentz

Long time LBBC blog contributor, RANDI RENTZ, graduated with honors from The Johns Hopkins University with a Masters degree in Special Education. She was an editorial assistant for a publishing company in suburban Washington,DC before becoming a special education teacher in a school district outside Philadelphia, PA. Randi currently is an Asperger’s Support Teacher for grades kindergarten through fifth. Presently, Randi has her own consulting company for children on the Autistic Spectrum where you can see her work at   www.helpforaspergers.com. She is a proud member, supporter, and blogger for many breast cancer organizations and never leaves the house without diamonds. Visit Randi at her web site at www.randirentz.com. Be sure to check out the teaser for her upcoming book “Why Buy a Wig…When You Can Buy Diamonds!”

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Call me crazy, but I look forward to waiting in line, and just about any opportunity to shoot the breeze with people I don’t know. I’m chummy with the guy who pumps my gas, (the only gas station nearby where they still pump gas for you), still exchange holiday cards with my 4th grade elementary school teacher, and the other day I spent a solid hour gabbing with an 81-year old woman I met at the tailor’s while having my pants hemmed.

I’m now a life-long, die-hard people person. I never used to be, though. In fact, I never enjoyed chatty encounters with people I didn’t know…until cancer. I wasn’t hostile before breast cancer.  Every day I had pleasant exchanges with strangers and acquaintances—an enthusiastic “Morning!” or a friendly “Have a great day!”  Such moments continue to be life-affirming, yet, prior to breast cancer, they were blessedly brief.

On-the-fly updates from people I’ve barely met used to drain me. Seriously.  I always felt obliged to respond with genuine emotion, to pay real attention. I would fake outrage or concern, with a performance that was definitely Oscar worthy. That meant stopping whatever I was doing, and force myself to focus. Since my laser-beam concentration was always sensed by the people stopping me, their details got longer and longer. Oy, vey! I felt trapped like a mouse in a maze.

Did breast cancer make me a people person? Well, I think it made me more aware of the little moments in life that make up the big moments. I now enjoy being a true people person—even though I’m inclined to dislike anyone who describes himself/herself this way. Go figure. I digress, sorry. Anyhoo, hear me out. Lifting your head and engaging with whoever happens to be standing next to you is worth the effort. It’s nice to see people smile and to genuinely smile back. It really feels good and refreshing. You should try it.

For one thing, you never know when you will receive priceless advice.  The 81-year-old cautioned me to get in good with my son’s future wife and to always take the dog out for an evening walk to do “its business.” Little did she know, I have no children and own two cats which use a litter-box. Needless to say, I felt it worthy to file away her words of wisdom. Maybe a stepson and a dog are in my future. Who knows? I digress. Sorry. When I left the fitting room, fiddling with the waistband of my pants, she said, “With posture like that, who needs Spanx? Coming from a stooped octogenarian, her words felt like a wake-up call to enjoy my youthful existence.

I believe my world is bigger with my random encounters. My brushes with strangers bring me the thrill of the unexpected, to glimpse a world I used to brush off and otherwise never see or appreciate. In the frenzy of life, with intense money, work and time pressure, I honestly didn’t have much conversational energy to spare.

Now, I think of it as a habit as “meeting new people,” even if I never see them again. My encounters with strangers bring me back to a place where I long to be. I never had grandparents, because they died before I was born.  But now I cherish chance meetings with people of all ages, especially older people. I find their perspective to be rather eye-opening.

Instead of rolling my eyes, I appreciate the interruption. I am so grateful for the little things in life. I now understand what being a warm person means.

And now, onto the Spanx…

Alysa Cummings: Yearly Check-Up

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

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!

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.