The Whole You: Is it Hot in Here?

Getting good breast cancer care means caring for yourself as a whole person—understanding how cancer impacts you physically, emotionally and spiritually. This is why we’re hosting Wellness Weekend, a three-day event that combines our annual fall conference, Breast Cancer Today: Individual Treatments, Shared Experiences, and Yoga on the Steps: Denver. In anticipation of the Denver, Colorado weekend, Randi Rentz kicks off our blogging series, The Whole You, with a post about a side effect that impacts a number women of who undergo hormonal therapy for hormone-positive breast cancer – menopause.

Randi Rentz new headshot

Ah, summertime. Long, sunny days. Outdoor cookouts. Lounging by the pool.

Say what??? Make that: Long, sweaty days. Internal cook-offs. Lunging for the pool.

Summer can be difficult if you’re in the midst of perimenopause or menopause. Geez! I first experienced menopausal experiences while receiving chemo. It got worse once I went on  tamoxifen. I also had to have a hysterectomy, which totally threw me for a loop. That procedure, of course, put me in permanent SCREAMING and KICKING menopause.

For those of you who have experienced menopause – naturally occurring or induced by cancer treatment – you know exactly what I mean when I say that hot flashes absolutely STINK!! Not only do they rock your world in a moment’s notice with absolutely no warning, but they (at least mine) are all consuming and utterly UNCOMFORTABLE! Well, let me be more specific: the truth of the matter is that my mind is a wasteland of emptiness during which I am at a complete and total loss of words when a hot flash comes on. They so overwhelm me.

Irritability, mood swings, sudden burst of crying. They’re all part of this new phase in my life. I am now menopause symptomatic (a.k.a. Itchy, Bitchy, Sweaty, Sleepy, Bloated, Forgetful and Psycho).

The number one symptom for me: hot flashes, cold flashes and night sweats. Now, these aren’t the sweats of relaxation you’d feel in a sauna, or the rewarding ones indicating you’ve just exercised This is more like: OMG, I’m on F%$#ing fire.  Call 9-1-1….Nooow! Continue reading

A Refreshing, Calm Morning with a Community of Support

Marcia Pinkstaff blogs about her experience with breast cancer, Yoga on the Steps and the importance of community.

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Almost 3 years ago, my life changed forever when I heard those awful words, “You have stage III invasive ductal carcinoma breast cancer.” Breast cancer? Stage III? How is that even possible? Those are the immediate thoughts that raced through my mind. Will I survive? What will life be like after?

I’m excited to tell you that in addition to advances in research and care, which have made early-stage breast cancer, mostly curable, there are also many exceptional programs to help you get your life back after diagnosis. Living Beyond Breast Cancer offers many of these programs including webinars, seminars, a conference, and my personal favorite Yoga on the Steps. LBBC has an amazing team that wants to help you navigate life after diagnosis.

Many organizations raise money for treatments and to deal with the health aspect, but there are so many additional challenges that a survivor must face including financial and mental health issues. The stress of having cancer and what’s to come can overtake you if you let it. LBBC is here to help you face these outlying issues and treat the whole person, mind and body.

I attended my first Yoga on the Steps in Denver, about a year after my diagnosis. At that time, I had finished chemo, a double mastectomy and radiation. I also had the opportunity to share my story, which can also be therapeutic, or at least it was for me. At that point, I still looked like a survivor and didn’t feel like myself, but participating in an event with such a wonderful group of people as the sun comes up is not only refreshing and calming, but a fun way to start your day.

I hope that you will join us for Yoga on the Steps in Kansas City and/or Denver. I would love to meet you and hear your story. And if you’re new to yoga or LBBC, I’d love for you to join us for this inspiring outdoor event. Yoga is a great way to not just help you physically deal with some of the new obstacles through stretching and even just getting some exercise, but also helps to relax you…something that is just as important.

Someone asked me the other day if cancer defines me. I thought it was an odd question. I responded “no.” Cancer doesn’t define me. It’s a part of who I am now and has changed me, but I get to decide what defines me. Cancer is just one of the many things that have shaped my life. You never know if and when you might here those words, “you have cancer”, and I hope you don’t. If you ever do, you will be appreciative of organizations like LBBC and the sense of community that they bring.

Cancer is a lonely disease. Surrounding yourself with others who have been there gives you something that you can’t get from your friends and family who haven’t been there. No matter how much someone loves you and thinks they know what you’re going through, they cannot possibly understand. I love all of those who tried, but I know even with family members who had cancer, I never fully comprehended what the journey was like until I lived it. Please join me in supporting this wonderful organization that gives so much back to the community.

Marcia Pinkstaff is an independent representative and star leader at Silpada Designs Jewelry and a stage III breast cancer survivor.

Connection, Information and Inspiration: Wellness Weekend

Wellness Weekend brings together two of our most popular programs, our annual fall conference, Breast Cancer Today: Individual Treatments, Shared Experienceswith our signature fundraising eventYoga on the StepsRead this letter from Catherine L. Ormerod, LBBC’s vice president of programs and partnerships, to learn about this event in Denver from September 18 – September 20, 2015.

Photo credit: Rich Grant and VISIT DENVER

Photo credit: Rich Grant and VISIT DENVER

Welcome to Wellness Weekend—three days of connection, information and inspiration from Living Beyond Breast Cancer.

Today, a breast cancer diagnosis requires more than just having the facts. To make the best decisions for your treatment and your life, you want information that helps you understand your options and the possible side effects. Getting good care means knowing where to find help and support, for yourself and for those who love you. And it means caring for yourself as a whole person—understanding how cancer impacts you physically, emotionally and spiritually.

Catherine-Ormerod 1At Wellness Weekend, we connect you with people across the country who share your concerns. Our annual fall conference, Breast Cancer Today: Individual Treatments, Shared Experiences, offers tailored information via three tracks:

  • Triple-negative breast cancer, presented in partnership with Triple Negative Breast Cancer Foundation
  • Hormone receptor-positive or HER2-positive breast cancer
  • Metastatic breast cancer, with information on all subtypes

Select a morning plenary and follow the tracked workshops throughout the day. Or mix and match to make the day your own. You’ll also find workshops specific to young women, those coping with inflammatory breast cancer, and caregivers.

Take advantage of opportunities to connect, including our opening reception Friday evening and optional offsite activities Saturday night.

Denver welcomes its 3rd "Yoga on the Steps" fundraiser at Cheesman park. The event is Living Beyond Breast Cancer's signature fundraiser and engages and connects participants at a large, outdoor yoga class suitable for all ages and skill. A Healthy Living Expo is also a keystone to the day.  "Yoga on the Steps" educates the community about healthy living and quality-of-life-issues regarding breast cancer while creating awareness of and raising funds for LBBCÕs education and support programs, which are always provided for little or no cost. ©2014 Rob Clement | RCVisual

©2014 Rob Clement | RCVisual

Cap off your weekend with Yoga on the Steps: Denver. On Sunday morning, we’ll gather outdoors at Cheesman Park, where the Denver community will join us in an all-levels yoga class and Healthy Living Expo to raise awareness of LBBC—and to celebrate our collective strength.

It will be a weekend of connection, information and inspiration. We hope you can join us.

Warmly,

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Catherine L. Ormerod, MSS, MLSP

Vice President, Programs and Partnerships
Living Beyond Breast Cancer

The 411 on Inflammatory Breast Cancer

LBBC’s Christina Meehan shares information and resources about inflammatory breast cancer and writes about attending Jefferson University Hospitals’ Inflammatory Breast Cancer Conference for the Community.

Christina Meehan

I inherited my large breasts (DDDs) from my mother (Fs, I think), and she inherited them from her mother and so on. I didn’t “get” my breasts until my late 20s when they seemed to appear overnight. These days I’m a lopsided B-kinda-C cup. Unfortunately, a botched boob job isn’t to blame. Instead, I was diagnosed with the “Big C” in July 2013 at the age of 31. My lopsidedness comes from a mastectomy to remove my right breast and a breast reduction in my left breast. I thought I had a hard time finding bras when I had two DDD breasts; one breast and a prosthesis is even harder!

When I was diagnosed I thought two things: there is only one type of breast cancer and young women certainly don’t get it. I soon learned, however, that while I did, in fact, have breast cancer, I had a rare type of breast cancer called inflammatory breast cancer. I never heard of it; my mother, a nurse for 30 years never heard of it, and doctors can go through their entire careers without seeing a case. How can this be?

Last month I attended Jefferson University Hospitals’ inaugural Inflammatory Breast Cancer Conference for the Community. More than 80 people attended including other women with the disease and healthcare professionals. Based on information from the conference and my personal experience, here’s what I think you should know:

What is IBC?

IBC occurs when cancer cells block the lymphatic vessels in the skin covering the breast. Symptoms include:

  • The skin can become thick, red, itchy and dimpled like an orange (peau d’orange is the technical term).
  • The breast can appear swollen, bruised or darkened.
  • The breast may feel heavy or full, warm to the touch, painful or tender.
  • The nipple of the breast can also invert (push in) or appear flattened.

These symptoms also describe an infection of the breast called mastitis. Very often women who go to their doctor with these symptoms receive antibiotics, especially those who are pregnant or breastfeeding. Continue reading

The Turning Challenge

Hear My Voice Outreach volunteer Maggie Kudirka started #TheTurningChallenge to help raise research funds and awareness of resources for metastatic breast cancer.

One year ago, when I was 23 years old, I learned that I have metastatic breast cancer that has spread to my sternum, spine, and pelvis. Metastatic cancer is cancer that has spread from its original location to another body part.  It is sometimes called advanced cancer or stage 4 cancer.

I am among the 10% of women who are initially diagnosed with metastatic breast cancer. It was the last thing I expected.  Other than being female, I have none of the risk factors for breast cancer: I am very young, thin, physically active and fit. I have never used any hormonal medications; I don’t smoke, drink, or use drugs; I eat a healthy diet.  Genetic testing indicated I do not carry the breast cancer genes. But, I have metastatic breast cancer.

Metastasis is what makes breast cancer a deadly disease. It is the leading cause of death in young women with breast cancer. In fact, every day 108 American women die from metastatic breast cancer. This is over 40,000 women each year and this number has held steady for the last 15 years. If a cure is not found soon, one day it will be me.

Billions of dollars are raised for breast cancer, but only 2% goes toward research to find a cure for metastatic breast cancer.  Most of the money raised is spent on awareness, early detection, and treatments for early stages of breast cancer. Early detection does not guarantee a cure, and successfully treating early-stage breast cancer does not mean that one never has to worry about cancer again. Metastatic breast cancer can occur many years after the patient’s original diagnosis and treatment.

Until a cure is found for metastatic breast cancer, no one with breast cancer can ever be certain that they are cured, even after both breasts have been removed and no cancer is detected following surgery. Our current technology cannot detect whether very tiny breast cancer stem cells have traveled to a new body part. These cancer cells sometimes begin growing after surgery, radiation, and chemotherapy have been completed. In fact, this will happen to about 30% of the women who were successfully treated for early stages of breast cancer. Months, years, or even decades later, they will develop stage 4 breast cancer and die. It is a possibility that no one wants to talk about.  It is the elephant in every breast cancer patient’s room.

Please help raise awareness and funds for metastatic breast cancer research by joining me in the Turning Challenge.  Let’s send a message to breast cancer fundraising operations to turn around and look at us Stage 4 patients; we deserve more than 2 percent.

I started the Turning Challenge as part of my work as a Hear My Voice Outreach volunteer for Living Beyond Breast Cancer. I knew I wanted my outreach project to combine a fun activity with my passion for raising funds for metastatic breast cancer and educating people about the disease.

The Turning Challenge can be fun for everyone: both dancers and non-dancers.  All that you have to do is post a video of spinning or rotating in some fashion.  It can be as simple as the Hokie Pokie or as difficult as 32 fouettes. You can hold a spinning object like a pinwheel or film your pet dog chasing his tail.  There are no rules!

Inspire, entertain, amuse – or just make us smile! Be creative!

Please use  #TheTurningChallenge and nominate three or more friends.  If you prefer not to complete the challenge, please make a donation to METAvivor where 100% of your donation will go to metastatic breast cancer research. Also, visit LBBC.ORG to learn more about metastatic breast cancer and resources available to people living with the disease. Share this information with people living with stage IV breast cancer.

Help make this a Turning Point for metastatic breast cancer research and resources.

The Internal Tug-o-War

Jessica Karabian is an LBBC Young Advocate. A version of this post appeared in her blog, Eyes up here, this is beyond my breast. Learn about our Fall 2015 Young Advocate Program.

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My name is Jessica Karabian, and I have Stage IV metastatic breast cancer.  It sounds like an introduction to an AA meeting to me, but to others (to the healthy ones) it sounds like a warrior call. For two years, I’ve lived in a world where there were two groups of people: People with cancer and people without cancer.

I have a story. It’s long–full of twist and turns. My story has a baby and a separated marriage, good relationships and bad relationships, endless doctors appointments and two separate diagnoses. It is complicated, but so is the story of anyone who has been diagnosed with cancer. Let’s be honest: If you have heard the words “You have cancer,” from that point on, life no longer goes smoothly. So once I heard that life changing sentence, the tug-o-war in my mind began. Every day, every hour, every minute it tugged in my mind. Am I living or am I dying?  At 29 years young, I became fixated on if I was living with cancer or dying from cancer. Not the sentence I thought would be replaying in my mind like a scratched record player.

So, fast forward to my mother asking me if I wanted to attend a Living Beyond Breast Cancer (LBBC) conference. I decided maybe I should. Maybe opening myself up to support, knowledge, and education wouldn’t be the worst idea in the world. It definitely beat the alternative to an all-day pajama commitment I had subconsciously made with myself.  After my third conference, I received an email from LBBC letting women under the age of 45  know that they were training for young advocates in Philadelphia for a three-day training weekend. I held no reservation and filled out the application. In fact, I put a lot of hope into it. Due to the conferences I had attended, I started to feel the need to participate in spreading knowledge.  KNOWLEDGE vs. AWARENESS… they are two very different concepts. Now all this time the tug-o-war continued.  Even through the participation and education, I continued with “Am I dying or am I living with cancer?” After several weeks of waiting and one phone interview later, I received my acceptance email. I was beyond thrilled to say the very least. I knew when I received this acceptance it was something very important to my healing. I wasn’t sure how it would play out exactly, but I knew it would be therapeutic and healing for me.

The day I was to leave, I found out an Internet support friend (who was an LBBC Young Advocate) named Sarah Merchant died that morning from metastatic breast cancer. Tug-o-war, please commence. I was so saddened by her passing that I was tempted not to go. I packed slowly–taking frequent breaks to lock myself in the bathroom to shed tears. I knew if I bailed on this opportunity I would regret it later. And so on the drive down, I spoke to Sarah and asked her to give me some sign I was doing the right thing and that this would indeed be purposeful and healing. When I arrived, I checked into my private room. I have to admit, I enjoyed the solitude and silence. I freshened up for dinner and the scheduled meet-and-greet and headed down to the lobby. I sat on the couch making small talk with the other brave women who were selected when I met a very stylish women who wore a fabulous dress. She introduced herself as Sara and she, too, was diagnosed with stage IV breast cancer. We hit it off from our first conversation! She, like me, was combining Western and eastern medicine to heal her body. We talked all through dinner. She was bold, smart, creative, and sensitive. I knew instantly that Sara was my sign from Sarah Merchant. She connected us through this crazy universe, and by doing that, she was letting me know she was okay and where she was supposed to be and I was exactly where I needed to be in life.

I learned so much during that intense weekend. My brain was spilling over with knowledge. But most of all, I made the most intense bonds with some of the most courageous and awe-inspiring women. And slowly throughout the weekend, the tug-o-war ended. That weekend taught me many things, but the most important thing it taught me was that I found where I needed to be in this world. I am not living or dying from cancer, I am existing with cancer. I am thriving with cancer. And like everyone else who is born, I am going to eventually die, but until then, my place in this world is to be involved with the education of and support for any young woman who has heard that crashing sentence: “You have breast cancer.”

So, the tug of war in my mind ended, and a gift was given to me. A gift of placement in this crazy beautiful world. The greatest gift I ever received.