Posts Tagged ‘Living Beyond Breast Cancer’

Giving Back to LBBC: Amy Lessack’s Story

November 27, 2013

The Tuesday after Thanksgiving will be the second annual #GivingTuesday, a national online initiative and day of giving back to charities, nonprofit organizations and important causes. Amy Lessack wrote this blog post on why she’s giving back to LBBC and why you should, too.

I recently learned about a national online initiative called #GivingTuesday and thought it was such a cool idea. The objective of the day is to have everyone everywhere donate or host charitable activities to benefit an organization of their choice the Tuesday after Thanksgiving.  Well, for me, the answer is easy:  Yes, of course I will “Give on Tuesday” and…my organization of choice is Living Beyond Breast Cancer (LBBC)!

LBBC does amazing things for women who are diagnosed with breast cancer and really for anyone who is impacted by the disease, including family members, friends, caregivers or healthcare providers. What makes LBBC a unique organization to gravitate to is the personal touch given by the staff and the services they offer.  LBBC offers webinars, community meetings and face-to-face conferences, as well as the Breast Cancer Helpline, which is staffed by survivors who lovingly answer calls and help where they can by just listening, offering support and resources – instead of just relying on “Dr. Google.”   (more…)

The Annual Fall Conference Is This Weekend!

October 22, 2013

randi rentzLong-time LBBC blogger Randi Rentz will be attending her very first fall conference hosted by LBBC! After receiving her brochure in the mail weeks ago after much anticipation, Randi shares with us what she’s looking forward to the most…

I am super excited to attend Living Beyond Breast Cancer’s Annual Fall Conference on October 26th and October 27th at the Double Tree Hotel in Philadelphia. Wowsy. I can’t wait to get the latest information on breast cancer from some of the nation’s top experts.

Did you know Suzanne Dixon, MPH, MS, RD is one of the speakers? She is an internationally recognized expert in nutrition, chronic disease prevention, public health, and epidemiology, with over 150 invited lectures to professional and consumer audiences. Double WOWZA! (more…)

Bye Bye Right Boobie!

July 23, 2013

Jen YongPrevious LBBC blog contributor Jennifer Yong, 33 was diagnosed with Stage IIB Breast Cancer in 2011. She underwent a left-side mastectomy in June of 2012 and removed her right breast in June of 2013. She is currently awaiting full reconstruction surgery. Here is her story…

The last time I had surgery was last summer when I had my left cancerous breast removed. I made a decision early in my diagnosis that if I tested positive for the BRCA gene, I would go ahead and remove my right breast and just be done with it. I definitely never wanted to go through chemo and radiation ever again.  As time went on, my left side healed and eventually I got used to all the little scars I had but I was anxious and ready to move forward with the new surgery and get the reconstruction started.

At first my surgery was supposed to happen in April or May of this year but because of radiation and my skin healing and also doing numerous fills on my left breast, the surgery was pushed to June- which I was kind of upset about since it was the summer time and I wanted to be able to at least show off my new body but that wasn’t in the cards just yet.  I was getting so frustrated that the whole process was taking so long and I was tired of feeling constantly lopsided from one breast being bigger than the other and that wearing bras still couldn’t hide my discomfort or my non-proportional body anymore. It was time to take the sucker out!

But the next thing you know- bam! It was the night before the surgery. I remember I wasn’t really nervous or too anxious I just wanted to get it over with.  Not having anything to drink or eat after midnight was killing me more than the thought of surgery itself since I was always dehydrated from my meds.  But I pushed on.

The morning of my surgery, my mom came with me and she gave me some comfort and stayed the entire day until the procedure was over. I had a great team of doctors. Dr. Lee was my plastic surgeon and Dr. Houlihan was my breast surgeon. Together, they gave me piece of mind that I was making the right decision and that this would be a better outcome in the end. The funny thing is I really had no attachment to my boobs throughout my breast cancer experience. I was always insecure about my breasts and to put a positive spin on things, I saw this as an opportunity to change my size and feel more confident about my body.  I quietly said goodbye to my little right boob that I’ve had for 33 years and drifted into a lull of sleep.

When I woke up hours later, the same pain had returned but it wasn’t as bad as my first surgery-I got sick from the anesthesia the last time and was vomiting as soon as I woke up and I could barely move but this time they put an anti-nausea patch behind my ear and I was able to keep down liquid. The pangs of nausea came and went and I felt that familiar pinch from the drain poking out from my lovely ugly patterned hospital nightgown.  I spent 2 nights in the hospital and then my dad came to pick me up.

Recovering has been pretty tough.  The drain caused me to be nauseous and winded for long periods of time and it was hard to really move around for the first week. That, mixed in with the hot flashes from the tamoxifen, made me pretty uncomfortable- but I have a great support of wonderful friends and family and a great boyfriend who has helped me heal and move forward so it has been a little easier.

The best part is being able to heal without wearing that ugly hospital gown!

Jen is a graduate of Emerson College in Boston, MA with a BA in Visual Arts (and is still looking for a full time job!)  She loves good jazz, hip hop, art in all forms, being crafty, eating good food and she’s am glued to random makeover and reality shows on t.v. You can follow her blog here.

On July 30th LBBC will be hosting the 2nd portion of our two part webinar series on breast reconstruction. For more information or to register, please click here.

Fearless Love or Brave and Crazy

July 15, 2013

PhotoLong time LBBC blog contributor, Randi Rentz, shares her take on the latest news surrounding Angelina Jolie’s decision to have a double mastectomy after testing positive for the BRCA gene. 

***

We all know that Angelina Jolie’s double mastectomy has put genetic testing in the spotlight. In fact, no one will ever do for women diagnosed with the BRCA gene what Angelina Jolie did by openly talking about her decision to have a double mastectomy. And the decision to lose both breasts is not an easy one.

 

The question is; if you were Angelina Jolie would you have made this decision and made it this public? In truth she had no reason to discuss this procedure and could have kept it to herself never alerting anyone to the surgical changes to her body. For her the toughest decision might not have been deciding on the surgery, but choosing to share the information since her fame and fortune depend on her physical properties. After all, she is no doubt one of the most famous women in the world if not the most beautiful.

 

Did she make her decision because she was brave or was it out of fear? Well, if you ask Melissa Etheridge, a breast cancer survivor and rockin’ singer, she would probably say it was out of fear. Say what?! Whoa. Those are fightin’ words. I don’t think Brad Pitt is very happy about that.

 

I guess when you mess with Angelina; you mess with Brad, too. While I don’t know why anyone would ever want to mess with Brad Pitt outside the bedroom, apparently Melissa Etheridge is taking on the celeb couple.

 

Melissa Etheridge believes that cancer comes from inside you and so much of it has to do with the environment of your body. She feels it’s the stress that will turn that gene on or not. Ok, so that’s Melissa’s belief.

 

Hmmm. I get what Melissa is saying, and she is certainly entitled to her own opinion, but I have to say, I applaud Angelina’s decision and discussion.

 

No one ever wants to go under the knife.  At the end of the day, people make different choices and go down different paths, and the one that Angelina chose is different from Melissa’s. I’m sorry, Meliss, but I don’t think that warrants criticism over one decision or the other.

 

I am sorry that Melissa went through breast cancer, and I’m sorry that Angelina had to deal with this horrific disease as well, but to Angelina Jolie I say thank you! My guess is that women all over America who know they carry the BRCA gene or suspect they should get tested are reviewing their options or bringing this issue out to reexamine it-all because Angelina Jolie is talking about it. I have not been a big fan of Angelina, but I’m pretty impressed with her now.

 

Do you see where Melissa Etheridge is coming from? Do you think she was out of line to criticize Angelina’s decision?

 

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!”

Vegan Macaroni and Cheese!

July 3, 2013

A few weeks ago, “Kicking Cancer in the Kitchen” authors Annette Ramke and Kendall Scott gave us some tips on how to use healthy foods to help boost our moods and ease anxiety and depression. Now, in perfect timing for 4th of July celebrations, these two regular LBBC blog contributors are back another with a calorie saving and heart healthy version of a traditional comfort food: Macaroni and Cheese.

In terms of cravings, pasta was on the top of our list during cancer treatment (well, come to think of it, pasta is really an anytime-craving!). We wanted a way to have our mac-n-cheese without feeling terrible afterward. This dish will satisfy your carb craving and — check out the ingredient list –  is literally packed with nutrition. Not like we always care – just give us our mac-n-cheese–pronto!

Squashy Macaroni and Cheeze

brown rice mac and cheese

Yield: 8 cups

Ingredients:

1 pound brown rice macaroni

1 medium butternut squash

1/4 cup sunflower seeds

1/4 cup walnuts

2 tablespoons fresh parsley

1 cup rice milk

¼ cup nutritional yeast flakes

1 tablespoon miso paste

1 tablespoon tahini

1 clove garlic, minced

1/2 tablespoon dulse sea vegetable flakes

1/2 teaspoon sea salt

1/2 teaspoon ground black pepper

Directions:

Preheat oven to 350º F. Slice open the squash, scoop out seeds and cut squash into 2-inch pieces. Place in steaming basket in a pot with 1 inch of water and bring to a boil. Steam until soft; about 15-20 minutes.

While squash is steaming, cook macaroni on stove top according to package instructions for al dente pasta.

In a blender or food processor place the sunflower seeds, walnuts and parsley, and blend until crumbly. Reserve for later use.

Add about 21/4 cups of the steamed squash, along with the rice milk, nutritional yeast, miso, tahini, garlic, dulse and sea salt and pepper to blender or food processor and mix until smooth. When pasta is done cooking, drain water, rinse and combine with squash mixture. Mix until pasta is well-coated, then pour into a baking dish.

Sprinkle sunflower seed crumble over top of macaroni and bake for 30 minutes until crumbs are lightly browned.

Enjoy!

Be sure to check back soon for another lightened yet delicious recipe from Annette and Kendall! Remember, you can purchase “Kicking Cancer in the Kitchen” on amazon.com  and as always, be sure to check the LBBC website often for upcoming webinars and community meetings and have a happy 4th of July!

 

 

Surprise

June 28, 2013

crashRonda Walker Weaver continues her series for the LBBC blog by discussing the three major challenges she faced after being diagnosed with cancer: Rise, Surprise and Adventure. Here she discusses the surprises she faced including a more recent, non-cancer related surprise (photo)…

My life has been filled with surprises – those gifts that show up on my back porch, uninvited, asking to stay. I usually have to choices with surprises – accept in awe and learn, or reject with a whine, “That’s not what I wanted!”

Learning I had cancer came as a huge uninvited surprise. I was in shock for months and in some ways I am still shaking my head in disbelief. Nothing I’ve ever felt – surgeries, pregnancies, or illness could have prepared me for the assault on my body – from cancer. That’s where the surprise came – nothing, nothing prepared me for my treatments and the side-effects. But I quickly stopped my whining and began to see it as a gift filled with surprises – the beautiful surprises that were, still are, a part of my journey. The Surprise is in the Goodness that holds my hand along this journey. The goodness in knowing, and in not knowing -

Knowing I didn’t cause this, and I acted quickly – I am healthy, and my healthy choices made this process more simple than otherwise – no “wish I would have” for me.

Knowing I have insurance. As the bills are still rolling in, we hit our individual out-of-pocket max in one week, I am blessed with healthcare. I give to the roadside panhandlers, and I’ve joked that one day perhaps I’ll stand on the side of the road with a sign that says, “Need boob job,” to see how much money I can make. But medical care is a necessity of life, and I count my blessings.

Knowing I can trust those who are providing my medical care. This has been such a comfort – they have a proven track record, are the kindest folks, they are proactive, and they are happy to work with me and my requests. As well, I have friends who are circling around me to hold me up when I’m falling, to lay beside me when I am alone.

Knowing I have emotional and physical support. I am so blessed to have family and friends and colleagues who care about me – I have so little to give right now, and they are giving so much (two types of soup in the fridge, a loaf of homemade bread, and warm apple cake, e-mails, cards, messages, music, a book).

Knowing Scott (my husband) is devoted to me. Oh he is a good man, he serves me gently, lovingly, patiently. I vacillate between tears of gratitude and tears of frustration and pain, and Scott holds me close. He is my rock. Even with the death of his father during all of this, he stands strong.

Knowing there is a plan – there has to be a gold lining in all of this – and I am hyper-aware that I need to be learning and growing from my experiences, so they are not in vain. While I have counted down my treatment calendar, I have not wished this time away. Writing, as a way to sort things out has been great therapy for me. This really is an “age of miracles and wonder.”

Goodness also comes in the not knowing as well:

Not knowing who or where I’ll be nine months from now, or even tomorrow – that’s part of the adventure and risk I’m willing to take on this journey. It’s part of the surprise – it is the excitement, even in the thick of things.

Not knowing what the plan is – I don’t believe “God must really love you to give you this,” or “God only gives you what you can handle.” Nope, not gonna buy this, there’s too much pain and hatred in this world, and knowing these statements, well, that’s discounting agency, choice, beauty, reality. This is not the God I believe in.

Not knowing has forced me to live in the moment, and this is something I must learn – I must learn it is good to not know.

 ***

A week post radiation my husband and I bought ourselves a post-treatment gift – hybrid bicycles – for road and trail riding. We put them in our pickup and headed to Southern Utah for a week of rest and relaxation and riding. I have fallen into materialistic love with my bike, and I have enjoyed the freedom it allows me, and the knowledge that this exercise is goodness for my mind and spirit. Until . . . two weeks ago I crashed on my bike. My bike flew one way; I flew the other, landing on my left side, elbow first. I am writing this post with one hand. I had emergency surgery to reassemble my elbow. I have stress fractures in my wrist, my hand, and my right foot. I also have some nice bruises! Crashing is the surprise, the goodness comes in the knowing that heck, I’ve had cancer; I’m not going to let a boot and a cast ruin my happiness. But I am going to rest! And no more surprises – right now I prefer “knowing.”

Ronda is 54 years old, she eats right, exercises daily, and there is no history of cancer in her family, yet she was diagnosed with breast cancer on Thursday, Sept. 6, 2012. She teaches folklore and writing at Utah Valley University and works for an online education company, LearningU. She loves reading, listening to music, gardening, walking and riding her bike, traveling, and spending time with her grandchildren, children, and her dear husband – who has been her pillar of strength through her journey. She also writes her own blog called Folklady’s Adventures. Be sure to check back soon for the 3rd installment of her story!

The staff at LBBC would like to wish Ronda a speedy recovery!

For more information about Living Beyond Breast Cancer please visit www.lbbc.org or like us on Facebook.

A Different Type of Survivor

June 18, 2013

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.

Lightened Up French Fries!

June 4, 2013

A few weeks ago, “Kicking Cancer in the Kitchen” authors Annette Ramke and Kendall Scott gave us some tips on how to use healthy foods to help boost our moods and ease anxiety and depression. Now these two regular LBBC blog contributors are back with a calorie saving and heart healthy version of a traditional comfort food: The French fry.

Sweet Potato Fries with Peanut Dipping Sauce

When looking to “upgrade” your food choices, it can sometimes feel overwhelming. It might be too much to make a huge, 360 degree change overnight. That’s why we love to keep it real and talk about doing it step-by-step. Every step counts and will make a difference! And guess what? Eating well can be delicious, too! Believe us, we are foodies and we want what’s on our plate to make us smile and make our taste buds happy!

One favorite comfort food many of us have is French fries. Here’s an idea, based on the “Poor, Better, Best Picks” concept in our book, Kicking Cancer in the Kitchen, for satisfying your craving while upping the nutrition in your food!

(more…)

A Plane In The Sky

June 3, 2013

A little poetry for your Monday! Courtesy of Suzin Glickman:

My Father was an Officer in the Air Force.

He was a  pilot.

He flew planes in the “Big One”, WWII

He is 96 and a cat with 9 lives.

I am his daughter.

——

I don’t really want to be a plane – literally,

But, in a poetic sense

If I were a plane

I would be…

(not want to be but would be now)

 

A War Bird,

As they were gloriously referred to in

“The Big One”

 

My engines are not firing on all fours

(Not in the sense I am mentally not with it, rather as a result of battle)

Low on fuel;

Flying on

Through this dark and stormy night

The plane, me, keeps flying

The odds building against it

Turbulence

Additional tactical problems arise

My sleek body is rattled with bullet holes;

Paint dull and chipping

Landing gear not functioning properly

Radio contact with tower spotty

 

Yet, me, the plane,

intends to accomplish it’s

Mission

See it through fruition

Attacked,

Battered,

Tossed about

 

The pilot will not bail,

The plane and mission will not fail

Failure, a NASA expression,

Is not an option

This plane will not crash and burn in a Fiery wreck

It will land

With as much grace

As its war torn shell can muster

Beating all odds

Mission accomplished

 

Not its final mission

Whatever patching

And touch up that can be done

Will be seen to

It will prepare

As best it can

For its next dangerous mission

 

I want to be the plane

Which despite all expectations otherwise

Stays up in the sky

And keeps flying.

Suzin Glickman May 18, 2013

SuzinGlickman

Suzin Glickman is a former Long Island girl, survivor, professor, lawyer, mother, wife and daughter who found writing and creative expression to be one of the most therapeutic and inspiring ways to cope and heal from her cancer diagnosis.  She is pleased to share some of her favorite original poems with the LBBC blog readers. You can find more of her poetry at SuzesMuses.blogspot.com.

Cancer: A Risk, A Surprise, And Certainly An Adventure

May 14, 2013

RondaWalkerRonda Walker Weaver, LBBC‘s newest blog contributor and soon to be regular contributor, shares her story about her diagnosis and how it made her step outside of her comfort zone and learn to accept the new changes in her life.

I am 54; I teach writing at our local university and I work for an education company in my spare time. I am the proud grandmother of 16 grandchildren! I found a lump in my breast on Thursday Aug. 30, 2012, and by the following Wednesday I had a diagnosis of cancer and surgery the following Wednesday – Stage 1 Grade 3 Invasive Ductile Carcinoma, Triple Negative. Twelve days from finding to removing (nothing in the nodes or surrounding tissue). I was told I’d need 8 biweekly chemotherapy treatments and then 35 radiation treatments. No one in my family has had cancer; cancer has never ever been in my vocabulary.  I knew I could not go on this journey alone, and so I invited friends and family to join me. I figured the prayers and positive thoughts would be enough to bear me up. I learned my life was out of my control, and I had to live moment by moment, not only trusting others, but actually needing others to care for me. No plans – just prayers.

I’m not one to run away – I am not one to live in fear – I will walk away from anger, hurt, betrayal, poison, but I prefer negotiating, talking things through, working things out, coming to some sort of compromise. I believe in education, intuition, and inspiration.

Yet I’m not really a risk-taker, unless a risk is defined as driving down a road without a map, or pushing myself at the gym. I won’t put my physical self in any place that might be risky – I don’t like heights, I’m not a great swimmer, I’m probably not going to sky dive anytime soon. I like intellectual risks though – what a rush it is to learn, to discover, and to know I can learn – bring it on!

I prefer “looking forward to,” over “surprise.” I love adventure, but I want to know a little about what I am embarking on. Over our back door we have the phrase, “Go out for adventure, come home for love.”  I like planning, that’s part of the adventure, part of the journey – it’s like receiving a gift card for Christmas, and then using it, 2 gifts for the price of 1!

And here stands cancer.  A risk, a surprise, and certainly an adventure. However – fear, get thee away. I will learn what I can, listen to my own body, and pray for inspiration – it is already arriving.

What I’m learning:

1. Acknowledge it – Breast Cancer

2. Don’t blame – it’s not heredity, not second hand smoke, not diet. It just is. Why me? Why not me.

3. Listen to myself – I was told “something” was coming my way, here it is.

4. Time – a dear friend of mine taught me, “Give it time, the answer will manifest itself.” Reminds me of the tune, “You Can’t Hurry Love.” Time is of the essence, but all I have is time.

5. Get out of my comfort zone – My comfort zone is this, do, do, do, busy, help, seek, find, do, do, do. Now I will learn to be still – again.

Ronda is 54 years old, she eats right, exercises daily, and there is no history of cancer in her family, yet she was diagnosed with breast cancer on Thursday, Sept. 6, 2012. She teaches folklore and writing at Utah Valley University and works for an online education company, LearningU. She loves reading, listening to music, gardening, walking and riding her bike, traveling, and spending time with her grandchildren, children, and her dear husband – who has been her pillar of strength through her journey. She also writes her own blog called Folklady’s Adventures.


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