Guest Blog: Metastatic Breast Cancer (MBC) Awareness Day

Today, October 13th, is Metastatic Breast Cancer (MBC) Awareness Day. Please welcome our guest blogger, Jen Anderson, as she shares her story and thoughts on our blog today. 

I’m lonely a lot.

I have Stage IV breast cancer.  Most people have no idea what that means, so I have to clarify and explain every single time I share this information with someone new.  It’s exhausting, and I (over)share with my friends and family by way of my DoTodayWell.com blog so that I spend as little time as possible dealing with cancer outside of the oncology office as I can.  I have metastatic cancer tumors in multiple places in my body which means I am terminal.  That’s the sentence I’ve developed when I need someone to understand, and I have found the terrible bluntness to be necessary to overcome all of the preconceived notions that exist about breast cancer.

Do you know when I often feel the most lonely?  It’s at the breast cancer events. The rallies, the walks, the survivor celebrations, the speeches, the balloons.  At the first event I went to as a Stage IV person, I had two choices for how to sign in at the event:

  • In memory of… : Um, no thanks.  I’m not dead.
  • Cancer free for ____ years! : Um, I’m not cancer-free.  Furthermore, no oncologist I know would ever tell any patient they are cancer-free.  So why is the breast cancer organization giving me (and the rest of the attendants) this bizarre false hope?

I can’t describe the crushing sadness that came over me as I stood at that table.
“I don’t belong.”
“No one cares about metastatic patients.”
“I am invisible in a space where I thought I would be the face of the disease.”

When we think of breast cancer survivors, we think of mostly older women wearing pink with perfectly restored breasts cheerleading, beaming, smiling about the number of years since their last treatment.

That picture is so far off from reality it brings tears to my eyes.  That is not what breast cancer looks like.

On one level Pinktober, pink ribbons, and the success of the breast cancer awareness campaigns that have been so prevalent in the past decades are endearing because we know there are dollars and attention given to breast cancer. There is much to be said about the inattention and lack of funding for other cancers, but that is another topic for another blog.  We’re talking about the breast cancer community today and how it egregiously underserves its most needy population.

You should know there is a throng of strong and vulnerable cancer thrivers who are living with cancer.  Their plight–our plight–is consciously or unconsciously hidden, smothered, or ignored by our peers.  It’s so, so, so lonely.  I was diagnosed with Stage III breast cancer at age 32, and Stage IV breast cancer at age 33.  At the time of diagnosis I had minimal family history and was in excellent health otherwise.  I am — in my opinion — the poster child for whom breast cancer organizations should be looking to serve.  Some organizations succeed in making me feel loved, empowered, and strong.  Others, unfortunately, make me feel angry, manipulated, used, and hurt.

Hashtags and social awareness campaigns such as #Don’tIgnoreStageIV, #MetsMonday, and #BCKills have evolved as an attempt to address the disconnect, and have varying levels of impact depending on the advocacy within diverse communities across the nation.  As part of my personal philosophy, I truly believe that the intentions of all people working for a charitable organization is to do the right thing.  I’m pretty good about giving the benefit of the doubt to anyone and everyone and overlooking oversights to focus on the positive contributions. However, when Peggy Isenogle of Komen Cincinnati approached me about creating a symposium to give Stage IV a stronger voice within the breast cancer community, I think I actually clapped and gave her a standing ovation while jumping up and down.  It’s that exciting to me.

It feels like a game-changer for me that someone who has time, energy and influence to extoll the contributions of Stage IV patients is willing to engage in that conversation.  I have so many ideas about how to serve the sick and the healthy men and women living with metastatic disease.  Stage IV patients are the ones who are the most intimately acquainted with breast cancer and all its facets and nuances.  Our needs are great.  This is an opportunity to match the heart: the desire to impact positive change in dealing with breast cancer with the patient who has experienced the very worst form of the disease.

This conversation could do much to address the loneliness experienced by every Stage IV breast cancer patient I know, myself included.

If you are interested in being a part of the conversation to change the perception and priorities for the breast cancer community with a stronger focus on those with metastatic disease, please contact Peggy Isenogle at: peggy@komencincinnati.org. We are planning for anyone interested in continuing this important discussion to join us for an evening of conversation and sharing on Tuesday November 10th at 6:00pm at the affiliate office.

Brad, Jen, Maren & Greta

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Stories of Inspiration – Volunteer Manager with Big Heart

Our volunteer’s hearts are PINK and their caring has no limit!
Are you a leader, a thinker, or a doer?

DON’T DELAY, VOLUNTEER TODAY for the 2015 RACE FOR THE CURE
Friday night, August 28, 2015

Volunteer ImageVolunteers play a vital role in the Susan G. Komen Greater Cincinnati Race for the Cure®. The success of the Race depends heavily on the support we receive from more than a hundred volunteers in the months leading up to the Race and on Race Day. Their passion and commitment is what makes our Race successful. Today, thanks to more than 100,000 survivors and volunteers/activists, Susan G. Komen® is the world’s largest, most progressive grassroots organization fighting breast cancer.

Many volunteer opportunities are still available, click on the link below for more details and to sign up.

http://cincinnati.info-komen.org/site/PageNavigator/CIN_volunteerManagement.html

If you have any questions please contact Jennifer Berigan jenniferb@komencincinnati.org or 513-671-9100 ext. 207

Spotlight
Jennifer Berigan, Susan G. Komen Greater Cincinnati – Staff
Manager of Special Events and Volunteers.

I started with the Susan G. Komen Greater Cincinnati Affiliate on February 8, 2006 (on what would have been my mother’s 57th birthday). I hopped on a plane (which is HUGE – I do not like to fly) that day for a Komen Leadership conference in Arkansas – I was blown away by this organizations passion, determination and drive to find a cure. I know my mom is proud of me for joining the Komen team especially, since she passed away May 28, 2005. I started my career as the Community Outreach and Events Manager- this was a perfect fit for me. My background, prior to having kids, was teaching. So the thought of going out into the community and educating people about breast health awareness was an exciting new adventure for me.

I have been with the Greater Cincinnati Affiliate for almost 10 years. The 2015 Race for the Cure will be my 10th race – WOW! My roles have changed throughout my time here and I have learned so much about how this organization operates.  I am currently the Special Events and Volunteers Manager, again, this is a perfect fit for me because I love to teach/ train volunteers to become amazing Komen Ambassadors in our 21 county community.

I encourage you to read our grants page online and learn more about where every dollar is spent. 75% of all funds raised stays here locally and 25% goes to national research. Through our 2015-2016 community grants, Komen Greater Cincinnati is investing $366,170 in education, diagnosis, treatment and support programs here in the Greater Cincinnati area provided by 8 local organizations that serve uninsured or underinsured residents in our service area. Additionally, $150,000 was awarded to Sponsored Research of Joan Garrett, PhD at the University of Cincinnati. Since it was founded in 1997, Komen Greater Cincinnati has invested more than $10.3 million in local breast health agencies and organizations

So, why do I work for Susan G. Komen Greater Cincinnati as the Special Events and Volunteer Manager? Because I believe in the Komen mission and I love to teach. I am passionate about finding a cure for breast cancer not only because I lost my mom, and many friends have been touch by this horrible disease but because I have two beautiful daughters and my wish for them is to:
GROW UP IN A WORLD WITHOUT BREAST CANCER!

(Me and my daughters) Kylee + Ella = my INSPIRATION!

(Me and my daughters) Kylee + Ella = my INSPIRATION!

 

Stories of Inspiration – The Breast Cancer Couple

Patty Stump and Mike Shroder look like your average married couple. They are parents, grandparents, restaurant owners and best friends. But they have one thing in common that most couples do not: they are both breast cancer survivors. Patty shares their inspirational story in today’s post.

“Mike and I share a lot of the same things that most married couples share except for ONE….. breast cancer! Most people are not aware that MEN can get ps and msbreast cancer too! Yes it is true! While the occurrence is much less the survival rate for men is much lower. I believe the reason is 2 fold. One is because men don’t look for it like women do, the other is when breast cancer occurs in men the tissue is so close to the chest wall it moves into the body very quickly so by the time it is realized it is in later stages.

Mike was diagnosed in 2006. I personally had NEVER known any other man that has had breast cancer. I soon discovered, while it is unusual, there are quite a few other men out there that are fighting the same fight. That is: fighting a disease typically know as a women’s disease.

Cancervive photo of PS MS

Patty and Mike

I was diagnosed in 2007 one year and 1 week after Mike and then again in 2011. Both times were very early stages and we both received excellent treatment from the doctors at UC Cancer Institute’s Comprehensive Breast Center.

Since our diagnosis we have felt it very important to let men know that they can also get breast cancer and that early detection for women can lead to a positive outcome, depending on the type and stage of cancer.

Because it is very rare for a couple to both have breast cancer, we have had the privilege to be a part of many special events. We have been honored to have won the Susan G. Komen Greater Cincinnati Promise of One Award. We were the Red’s Bat Couple on Mother’s Day “Batting Out Breast Cancer”. It was the 1st time a man had been nominated in the entire Major League and we won. We have been asked to be interviewed many times on most of the local TV stations sharing our unusual story of the “Couple With Breast Cancer.”

61946_166129203397976_4213519_nPatty and Mike have participated in the Race for the Cure with their families and friends for many years now and it’s always a joy to see them at the Race. Join them and hundreds of other survivors at the 2015 Race for the Cure, Friday night August 28th at Smale Riverfront Park. #CincyRFTC

team 2012

Patty and Mike’s team: Team CANcervive

Stories of Inspiration – Volunteer Spreads Hope

Race season is in full swing! If you didn’t know, our 18th Annual Race for the Cure is Friday night, August 28th. We’d like to highlight some inspirational stories over the next few weeks. We hope they inspire you to register, volunteer or make a difference in someones life.

Our first post is written by Donna Traylor, an avid volunteer and mother of breast cancer survivor and Komen Cincinnati staff member Melissa. Enjoy!

“Why do I volunteer for Susan G. Komen?  I volunteer because I want to support the fundraising efforts of Susan G. Komen events, which provide early detection programs and funding for breast cancer research.

Why do I want to do that you ask? I do it for my daughter, and for all the other men and women that are affected by breast cancer. They all deserve to have hope,

Melissa crossing the finish line as a survivor in 2013

Melissa crossing the finish line as a survivor

HOPE that one day there will be a cure. I became involved with Susan G. Komen Greater Cincinnati four years ago, shortly after my 25 year old daughter was diagnosed with Stage 2 breast cancer. I felt like I needed to do something, something that made me feel like I could make a difference. Volunteering is so easy, fun, and most of all, it’s very rewarding. A few hours of my time a year, is the least I can do.

I volunteer at the Greater Cincinnati Race for the Cure and at the Komen 3-Day 60

Jeff and Donna Traylor Proud Volunteers

Jeff and Donna – Proud Volunteers

mile walk in Atlanta. It always brings tears to my eyes when I hear a walker say “thank you”. I used to wonder why are they thanking me for volunteering? But now I understand why they say that, if it weren’t for volunteers like myself, there wouldn’t be a Race for the Cure or a 3-day 60 mile walk, there would be less of a chance for HOPE, for a CURE.

If breast cancer has touched the life of someone you love, you will understand why I’m so passionate about volunteering for this wonderful organization. When it’s your daughter or your loved one, you want do anything you can to make a difference and to help find a cure and that’s why I volunteer.”

 

If you are interested in volunteering at this year’s Race for the Cure, please contact Jennifer Berigan at jenniferb@komencincinnati.org or click here to check out the volunteer listings on our website.

Register Today

Sponsor Spotlight – Oxford Physical Therapy

Our Sponsor Spotlight blog series will feature stories from our wonderful sponsors. This month we welcome Oxford Physical Therapy to the blog!

Happy New Year from Oxford Physical Therapy Centers, the exclusive physical therapy provider for Susan G. Komen Greater Cincinnati!  We hope that your 2015 is off to a happy and healthy start.  We have an exciting announcement to share with our friends at Susan G. Komen Greater Cincinnati!

We offer a wide array of therapy methods and modalities from orthopedic injuries to general low back pain, but most recently we have started our lymphedema treatment program at our Montgomery Center!  Liz Reis, PT, DPT, CSCS, CLT, has begun working with patients who are suffering from lymphedema.  Lymphedema is an accumulation of protein-rich fluid, often manifesting in the arms or legs.  It is a chronic condition which may worsen if not addressed.

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Liz Reis, PT, DPT, CSCS, CLT working with a patient

 

You might wonder how physical therapy can help you.  During your treatment with Liz and the entire staff at our Montgomery Center, you will receive manual lymphatic drainage (a gentle massage  like technique used to increase the movement of lymph interstitial fluid), patient education, therapeutic exercises, and compression (assistance with obtaining garments or wrapping, which is done in our clinic).  In addition, we will conduct measurements of swelling, range of motion, and strength.  Similar to all of our patients, you will receive an education on home exercise program for continued healing outside of physical therapy.

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Aaron Molloy, PT, DPT, CSCS, COMT working with a patient

 

We welcome the opportunity to discuss with you how we can help you through this stage of symptoms.  Please feel free to contact Liz at our Montgomery Center (located near the Melting Pot in Montgomery) by calling 513.469.1444.

As a reminder, if you have any other type of pain/injury, we provide FREE injury screens at all our 14 locations in Cincinnati and Northern Kentucky.  Feel free to stop by during our hours of operation, as a doctor’s prescription isn’t necessary for physical therapy and we can still bill through your insurance!  For more information or to find a location close to you, visit us at http://www.oxfordphysicaltherapy.com.

Focus on Fundraising: Knocking Out Breast Cancer

The Komen Greater Cincinnati blog is back! We will be blogging a few times a month. If you have an inspirational story, topic or idea you’d like to share please contact Melissa at melissa@komencincinnati.org. We’d love to hear from you!

This month’s post is focused on fundraising. Enjoy!

Brian Lane is 26. He works for his family’s business. He graduated from Miami University, played football for Moeller and started boxing at The Punch House in 2012. Sounds like your average guy right? Well, this average guy was able to raise over $6,000 for Susan G. Komen Greater Cincinnati in November 2014.

Rewind to the spring of 2014, Brian was on a business trip when his dad called and told him to cut the trip short and come home right away. When Brian got home, he walked into the kitchen to find his sisters looking somber, and his mom and dad waiting. There is never an easy way to tell anyone that someone they love has breast cancer, so Brian’s dad Mike came right out with it, “Your mom has breast cancer.” As Brian tells on his GoFundMe page, “I remember hitting the floor in tears searching for my breath. All I could hear were my sisters crying and my dad saying, ‘I am sorry there’s no easy way to deliver that message.’ Finally I feel someone’s hands pick my 270lbs body up, and go figure, the only person strong enough to do that was my mom, Holly Lane.”

Brian had been boxing and working out at The Punch House since 2012. The gym was a place he could go to talk to a friend or let out all his anger while taking it out on a bag. He’d been asked numerous times to take part in a Client Fight Night. But he always declined. He was approached again in September of 2014 and this time he had a reason to say yes, he thought to himself “Brian, your mom fought and she didn’t have a choice. It’s time to put your mind to something and dedicate yourself to something bigger than you and give it your all, win or lose.” He decided that if he was going to get punched, he was going to do it in the fight against breast cancer. So Brian teamed up with The Punch House on November 14th to Knock-Out Breast Cancer.

His goal was to raise $1,500, and within the first few days he had raised $3,000! Brian used GoFundMe.com. It’s easy to use, easy to set up and you can link it to your Facebook and Twitter accounts. That way it’s easy for friends to share, so easy that in just a few days Brian’s Facebook post about the event had close to 500 shares! His close friends and family started donating first, and then it snowballed into friends of friends, his parents’ classmates, and people he didn’t even know. In just a month he had raised over $6,000! He said he didn’t do much planning, it all just happened.

Brian and his family

Brian and his family

On November 14 Brian entered the ring at The Punch House, wearing pink, to a crowd of 500 people – the majority there to support him of course. In the end his opponent’s hand was raised as the winner, but Brian says the fight could not have been closer. And we could not agree more with him when he says “I knew I won before I stepped into the ring.”

Brian and his mom embrace after his fight

Brian and his mom embrace after his fight

If you’d like to learn more about Brian’s story, please visit www.gofundme.com/boxingpolarbear

week six… the one who does it all

November 4th, 2012- a day to celebrate a 10-year survivor, my sister, Jeannie.  But rewind 10 years,  November 4th ,2002- a day we would like to forget.  The words, “you have cancer,” were unbelievable and devastating.  But to my 30-year old sister, it was the day she stepped up to the plate, ready for the fight of her life.  She had been diagnosed with Stage 2 breast cancer and had a long road ahead. Thinking back on her journey, she would agree, there was a large down side; lumpectomy, chemo, radiation, hair loss, nausea, dozens of doctor appointments, and a hysterectomy.  But all this is overshadowed by the life lessons and good that have come since that day.  She learned to take small steps to get to a goal, especially in fighting breast cancer.  She learned to surround herself with positive people and positive stories. She learned not to sweat the small stuff.  She has met so many new people along her journey;  some that have given her courage to keep fighting and some that she has been able to inspire with hope.  She has never questioned “why?”, but instead, “what can I do to help.”  She learned what her true strength is, the meaning of faith and the power of hope.  Her favorite quote, “what lies behind us and before us are tiny matters compared to what lies within us.”

Jeannie’s daughter at the Race for the Cure

During my sister’s battle, she organized her first Race for the Cure team, one that rallied family, friends, doctors and nurses alike, to join together in celebrating her journey.  This year will be her tenth year for a team.  The day touches our hearts just the same as the very first race we attended.  We are so proud to be in the presence of such strong women and men who have won the battle, and just as aware of the strength of those we have lost to the disease.   For this is why my sister continues to join Komen in finding a cure.  She too has lost a dear friend and made her a promise that she would continue the fight.

Jeannie and friends at the 2009 Race for the Cure

This diagnosis certainly was not my sister’s plan for her life at the age of 30, but today could not imagine her life without THIS plan.  She believes this has made her the person she is today and defined her mission in life. She strives to make a difference in the lives of those touched by breast cancer and hopes one day to prevent any others from the battle.   She reaches out to any newly diagnosed women to answer questions, listen, and cheer them on.  Jeannie has been able support and encourage our three aunts that have been diagnosed since her journey. She also helps Komen Cincinnati in any way possible.  She organizes survivor gift bags each year for the Race for the Cure along with family and friends, she volunteers for many Komen events to raise breast cancer awareness, and has appeared on news programs promoting self-detection and yearly exams.  She believes strongly in their cause.  She has even inspired her daughter, Hope, who has had a lemonade stand raising money for the Race, remembering each dollar is another step closer to finding a cure.
So this November 4th we will celebrate the life of one of the strongest people I know, my sister Jeannie.  We will place ten pink flamingos in her front yard, one for each year of survival.  This is an annual family ritual that reminds my sister to smile because she is a SURVIVOR.   The flamingo represents grace and beauty,   both of which she has displayed on her journey.  She encourages others to celebrate their “day” with something that inspires them as well.  We look forward to herding a flock.

Jeannie’s flamingos!