Amy Hauser: In His Grip (Part One of a Two-Part Series)

Amy Hauser never considered herself destined to be an author. From her self admitted “life-long inability to properly start and stop paragraph formations, among other things,” to being busy raising two children full time, a book simply was not on the radar.  Until God said otherwise. Today, the LBBC Blog welcomes Amy to tell her story of how her religion helped her to survive.

My name is Amy Hauser and I am a fellow survivor of breast cancer.  Here is my story. It’s a simple story of an ordinary life and its challenges intersecting with an extraordinary God. With that, I think it is worth telling.

I was diagnosed with Invasive Ductal Carcinoma in May 2010 after discovering a walnut sized lump under my arm just two days after my annual well-woman exam.  What a mammogram was unable to detect, an ultrasound verified – that cancer had entered my lymph system. At 43, I began a six-month intensive chemotherapy plan, underwent a bilateral mastectomy and lymph node dissection, then a final reconstruction surgery. The entire process lasted roughly 12 months. During this time, God revealed Himself in mighty ways.

Before, during, and after my walk with breast cancer, my prayer was for God to show me His plan for my life, to show me how to use past trials (pre-cancer, that is) in unique ways that would bring blessing to others. The answers to those prayers has changed the course of my life as well as that of my family’s.

After the diagnosis, I reluctantly started to journal. I agreed it would be a way to streamline information, and keep me from getting tired of repeating my medical updates over and over again. The blogging quickly became an outlet for sharing my heart. God would prompt me to share something and instead of letting the fear of judgment from others rule, I would share my thoughts. Almost immediately, we were encouraged (and surprised!) to discover that others were gaining inspiration and that the insight channeling through the journal was powerful. That was God.

Several months after treatments had begun and as I began the process of getting life back up and running as normally as I knew how, I recall sensing God asking, “Just when are you going to start writing my book?”  I sorted through the doubt, heeded the lessons He taught me through cancer and that next week I began IN HIS GRIP…A Walk Through Breast Cancer.

IHG is a raw, open glimpse of a day in the life of a cancer patient and the story of God intersecting a life in progress. It is a story of how God works in the midst of our biggest struggles IF WE CHOOSE TO LET HIM. Not only will you get to know my family before, during, and after the cancer journey, you will see reflections that share what was learned after the fact.  This story shows how God worked not only on the struggles that were evident to the rest of the world, but how He worked in and through the cancer to heal deeper, more private wounds.

IHG was completed near the two-year anniversary of the lump discovery – a discovery that I initially thought would change my whole world.  Interestingly enough, it did change my whole world, but not as I expected.  While I thought breast cancer would rock me off my foundation, it did quite the opposite.  It cleared that foundation from clutter and allowed me to firmly anchor to what was lying beneath – the solid rock that was so readily available and intended for this purpose.  I just had to be willing to look and allow some of the clean up to take place.  Storms will continue to come. I don’t welcome them but I know they are inevitable – inevitable in ALL our lives, whether cancer or otherwise.  I know this story, His story, will be an inspiration for trials of MANY kinds.

God not only answered my cancer prayers, but my pre-cancer ones as well. From the inspiration to write IHG, to showing me how to “find my purpose and share with others through UNIQUE ways.”

Prior to the discovery of the lump, we formalized a ministry called Made For More, developing and sharing some unique women’s programs. Since the cancer, my husband Tom and I have fully launched M4M.  Several aspects have grown out of various trials in our own lives, cancer being only one of them.  An outreach program that I am excited to share is our newly developed HORSES.HEALING.HOPE. For Breast Cancer Survivors. It is an Equine Assisted Therapy program, currently offered in the North Houston, Texas area.

NO matter what your religious or spiritual beliefs, LBBC recognizes the strength that many woman find in their faith. Amy lives in The Woodlands, Texas with her husband, Tom and their two children, Ross (17) and Sara (12). Visit their websites to earn more about  HORSE.HEALING.HOPE for Breast Cancer Survivors and In His Grip:A Walk Through Breast Cancer.

Randi Rentz: Here to Help

Regular LBBC blogger, survivor and author, Randi Rentz was recently contacted by a woman for information and support about being newly diagnosed.  At Living Beyond Breast Cancer we have volunteer survivors who provide the same service through our Survivors’ Helpline. Here on the blog, Randi shares her answers as well as her appreciation for organizations like LBBC.

 Source: winmesothelioma.blogspot.com

A newly diagnosed woman (who did not want her name mentioned) recently contacted me about my breast cancer experience. Like most newly diagnosed women, she had many questions. Although we stayed on the phone for two hours, I wanted to give you a short Q & A regarding self-exams and my go to organization, Living Beyond Breast Cancer.

Q. Tell me a little about yourself and your lifestyle.

A. My name is Randi Rentz, I am 46, and single. I work for a public school outside Philadelphia, where I teach children, K-5 on the Autism Spectrum; primarily children diagnosed with Aspergers Syndrome. In addition, I have my own consulting company, Rentz Consulting, where I work with people of all ages on the spectrum. I have also just completed a book called “Why Buy a Wig…When You Can Buy Diamonds,” which is a memoir about my breast cancer experience. I am hopeful for a Fall 2013 publication. You can find more information about my book at www.randirentz.com.

Q. Describe how you found your cancer, were you on ‘watch’ or did it sneak up on you?

A. I found my lump doing a self exam in the attic of my father’s house while packing up his mementos after he passed away. I had sharp pains shooting below my left breast into my rib cage. I was only 42 and had no immediate family history or a first degree relative with the disease. I credit my life being saved to groups like Living Beyond Breast Cancer, for creating so much awareness and education about self-exams. When I told my doctors about the lump many of them told me not to worry because it was probably a cyst since I’ve had a few cysts before. Also, I was relatively young and had no family history. I think it is so important, for young women especially, to do breast self exams. But, my doctor I first showed the lump to insisted that it wasn’t anything to worry about and to go home after she looked at my mammogram. I insisted in getting an ultrasound, which looked bad, and then I got a needle biopsy the following week.

Q. Following diagnosis, what helped you cope the most, and gave you strength?

A. My friends (they came to treatments and took care of me by cooking for me, doing my laundry and just keeping me company), and co-workers (they were such cheerleaders and volunteered to sleep over my place many evenings)! Also, my doctors were incredibly supportive (always reassuring me that I was doing a great job with treatment). And, therapy (I saw an amazing therapist who specializes in treating cancer patients and their families). Speaking to other survivors was incredibly helpful: that is why I wrote my book…to be there for other women.

Q. How has breast cancer changed your outlook on life?

A. I try to make myself worry less about the little things and feel very appreciative of life. We recently had a talent show at school where I cried when I saw a few girls dancing on the stage….absolute tears of joy. I could not believe how lucky I was to be watching these girls leap through the air. They looked so beautiful in their pink tutus, black tights and pink ribbons in their hair. I realized that my life has gone on, but there is always an homage to how lucky I am to be living, an appreciation that pink ribbons have such a complex meaning to me.

Q. What advice would you give to someone who is newly diagnosed with breast cancer?

A. Do your homework and get involved in your treatment options because it will make you feel so much more in control. Get a 2nd and 3rd opinion if you need to (I got 5)!

Q. How has Living Beyond Breast Cancer been helpful to you?

A. The educational programming that LBBC is doing is making me feel that the world will be a better, safer place for women diagnosed with breast cancer. In addition, their goal is to empower all women affected by breast cancer to live as long as possible with the best quality of life. And, I know that feeling the power of their organization, the power of their community, makes me feel that I am not alone in this fight. The organization continues to make me feel like I am part of a huge team in fighting this disease. Also, I really think that LBBC helps people realize how much the families are changed by breast cancer, and the ripple effect of a breast cancer diagnosis on a family. LBBC has shown me how much can be done in the fight against this disease because breast cancer often leaves us feeling so powerless. LBBC is a great example of how much can be done, and how much hope there can be in ending this terrible disease.

To learn more about Randi, peruse her blog, or read excepts from her book, Why Buy a Wig…When You Can Buy Diamonds!, you can visit her website.

All things should be created equal – but NOT a cancer diagnosis

This entry was written by Jackie Roth, PhD. Jackie is a Postdoctoral Fellow at The Children’s Hospital of Philadelphia who was diagnosed with Stage III A breast cancer at the age of 28. Every other Friday, throughout the entire year of 2011, Jackie will share a blog entry about her breast cancer experience. This year-long blog series is in honor of LBBC’s 20th anniversary.

To read Jackie’s previous entries, enter “ Jackie Roth” in the search box on this site.

Sometimes I can hardly believe that we live in a world where cancer is still affecting so many lives.  We can fly through the air, live under water, run our lives from our phones, and yet we have not come up for a cure, or better medicine to fight this disease.  There are an increasing number of cancer survivors over the years so we are making some progress, but there is still a long way to go.  

I know that finding a cure is significantly easier said than done.  I know this first hand; I am a cancer researcher.  The challenge that we face is that cancer cells are so different from normal cells, and we’ve only begun to understand how cancer cells work.  They acquire properties that allow them to continuously grow and divide out of control.  Although some cancers may have certain properties and markers in common, they are all very different from each other.  A treatment plan that works on one person’s cancer might not work for another person. 

Each time I hear about another person diagnosed with cancer I just feel awful thinking about the road ahead.  I know it is a tough one filled with many challenges.  But I feel  even worse when I hear that someone has a recurrence/metastasis.  They already went through treatment once, how much more is one person supposed to take? 

It seems like everywhere I turn I hear about a new or recurrent diagnosis and it is really starting to make me mad.  Just a few weeks ago, a famous TV personality, Guilana Rancic, announced that she too had breast cancer at age 36.  Yet another young woman diagnosed.  I do not wish this on anyone, but I am thankful that she has decided to share her story with the world and spread awareness.  Making others aware of cancer is critical to better health and early detection.  That’s one main reason that I write my blog, plan events, or just share my story. 

Us survivors know life is just not fair.  Growing up, however, I tried to make it fair.  This is especially true when it came to me and my sister.  It was my mission to make sure we had equal everything.  Well cancer is one thing that I hope we never have equally.  She will be 28 this weekend, the age at which I was diagnosed.  She’s already been checked and she is perfectly healthy. 

Jackie and her little sister.

I go to work every day hoping to become one step closer to understanding cancers.  Recently I switched fields from breast cancer research to brain cancer research.  I just felt like I had to take a step back. I was dealing with breast cancer professionally at work, then dealing with the reality of it every day when I left work.  It was too much.  I did not want to read any more papers about the disease.  But every day I am thankful for those who do read and research it, because that is the only way to move forward.  Although I professionally left the breast cancer research field, I still feel like I am making a contribution to helping others…it’s just in a different way. 

It wasn’t Breast Cancer Awareness Month just a year ago

This entry was written by Jaime Rossano. Jaime was diagnosed with 2B invasive ductal carcinoma breast cancer. Jaime is a college student pursuing a degree in Humanities and Social Science Every other Friday, Jaime will share a blog entry about her breast cancer experience. This year-long blog series is in honor of LBBC’s 20th anniversary.

To read Jaime’s previous entries, enter “Jaime Rossano” in the search box on this site.

Well, I guess you can say “it’s October.” When October approaches, I find myself consumed with many worries and emotions. In the past, when October would come around I would think of how much I miss my grandmom and how her birthday was at the end of October. I would remember the times we had shared together. A few years ago I found a birthday card for her and just put it in a box.

This October seems to be a little different, although I miss my grandmother dearly, I have been thinking so much about this time last year. October 29, 2010 was when I found out I had breast cancer. This October, although I am currently cancer free, brings out many thoughts of how I actually made it this far.

Just a year ago, I was drowning in my own tears and was desperate for an answer of why this is happening to me. Just a year ago, I was sitting in my doctor’s office figuring out my plan of action for survival. Just a year ago, I was lost, confused and so scared of what challenges I was going to have to face. Just a year ago, I realized how much my family meant to me but I was always afraid to share “the news.” Just a year ago, I didn’t know where I was going to be in the future.

It’s funny, well not really funny, but I always doubted myself. I actually made it through my surgery, chemotherapy and radiation.  I did it! I have had many struggles and challenges along the way and needless to say they are not over with yet but amazingly I got through it.

It’s hard now-a-days because I feel like I almost put in the back of my mind what I went through because life has returned to the normal “school, work, living-not-fighting anymore.”

 I know some people rather not use the word ‘fighting” cancer but for me, I was. I was fighting myself, I was fighting my body, I was fighting to make it through every day. I still feel like I am fighting because of all the little bumps in the road that I have had. I think I will always be fighting making sure this disease doesn’t come back to kill me. I have doctors’ appointments so regularly sometimes that I think they should give me an ez-pass to jump in line.

Fall conference: news you can use breast cancer updates for living well

“I was even fighting to make sure Ronnie could see his mommy.”

Not only does October have and important meaning to me but also, October is Breast Cancer Awareness Month. I have to say I have my box of tissues ready for all the commercials about self-breast-examinations and screening. Some are sad, some are cheerful, some I will relate to because it’s what I went through.

I am also looking forward to the new move coming out 50/50. At first, I was not too thrilled that they actually made a movie about this awful disease. But then I realized that the humor reflected in the movie was the only way I got through some of my treatments. My mom reminded me of that one. 

A few months ago I contacted the office of Healthy Campus Initiatives at Rowan University to see if there was any way I would be able to share my story. I am so excited to share that my story is going to be featured in Rowan’s Student Health 101 on-line magazine for October and I will be speaking on October 11th at Rowan University during a breast cancer awareness luncheon.

Not only is October bringing back memories, but this October, I am making memories.

If you live in the Philadelphia region, make a memory by joining Living Beyond Breast Cancer as we kick off Breast Cancer Awareness Month by hosting our annual fall conference, News You Can Use: Breast Cancer Updates for Living Well, tomorrow, Oct. 1st. Fee waivers are available at-the-door and walk-ins are welcomed.

Cancer: before and after

This entry was written by Jackie Roth, PhD. Jackie is a Postdoctoral Fellow at The Children’s Hospital of Philadelphia who was diagnosed with Stage III A breast cancer at the age of 28. Every other Friday, throughout the entire year of 2011, Jackie will share a blog entry about her breast cancer experience. This year-long blog series is in honor of LBBC’s 20th anniversary.

To read Jackie’s previous entries, enter “ Jackie Roth” in the search box on this site.

Lately, more so than ever, I’ve been looking back at past pictures of myself, usually  to select one to post here with my blog.  But what I’ve realized recently is that I don’t recognize the old, pre-cancer me.  I am not just talking about the physical stuff, like long hair and a nice tan.  There is a certain happiness and carefree-ness that just seems to radiate from me in those pictures.  Pictures of the post-cancer-me are not nearly as happy; they are more sorrowful.   

“I miss the care-free days when I did not have to worry about cancer and recurrence.”

When I am smiling now, it’s because, well, you have to smile in pictures, right? I’m not smiling because I am truly happy. Before cancer, I could go out in the sunlight and get a nice tan in the summer. After cancer I find myself hiding indoors so that I don’t reactivate my recent radiation.  Before cancer, I enjoyed walking outside. After cancer, I can’t go more than one block before my hands swell up like balloons due to water retention from my tamoxifen.  After cancer and because of water retention, wearing my wedding rings is nearly impossible.  After cancer, I’m at risk for high blood pressure, I have headaches, and I’ve been introduced to my new friend – an ever-growing waist line that requires me to purchase a new, larger pair of pants every two weeks or so.  I can’t sleep through the night anymore due to my intense hot flashes – after cancer.  My new upper body does not fit into my clothes and it is just outright difficult to dress – after cancer. 

Nowadays, about one hour after I wake up in the morning, I realize that I am alive and I get to live another day.  In that moment, I stop and pause to think about how thankful I am that my feet are touching the ground.  I certainly never did this before cancer.  The pre-cancer-me was always a planner and and she never really lived in the moment.  I was spending my time trying to figure out what is going to happen next.  Well, that got me nowhere because your future can change within a single minute.  That minute when you hear the words “you have cancer” your future plans fall apart.  Before cancer, I used to see a house, kids…the usual for a newlywed in her twenties.  Now my future picture is so blurry. I am not sure what I see. 

I often think about what I would tell the old, pre-cancer-me. Oh, how I wish I could jump into the picture and talk to her. I would even be fine simply writing her a letter…

Note to Jackie: 

  • Check yourself for cancer – no, it’s not way too early in life for that
  • Do not to take anything or anyone for granted
  • Be thankful and enjoy life - but don’t be naïve to the fact that it can all change in an instant

Pre-cancer, I did not have a care in the world.  I think most people in their twenties live their life this way.  I know I did.  The old saying: You don’t know what you have until it’s gone has never been made more clear to me.  I really don’t think that healthy people realize just how lucky they are.  I know I didn’t. 

How did your breast cancer diagnosis reinvent your tendency to live the care-free life that you might have lived before cancer? Comment here or on our Facebook page.

To read Jackie’s previous entries, enter “ Jackie Roth” in the search box on this site.

No Pink Ribbons Required

This entry was submitted by MJ DeCoteau, executive director and founder of Rethink Breast Cancer:

Most of us in our 20s and 30s are far too busy building a life, a home, a family, a career to think about breast cancer. And when it does strike a young woman, it’s a complete and utter shock. Rethink Breast Cancer was created by young women for young women. We’re working hard, creating savvy support, awareness, education and research programs that speak to the unique needs of young (or youngish) women busy balancing full lives.

I was just 18 years old when my mother was diagnosed with breast cancer and 22 when she died. My grandmother also had breast cancer so I felt like a bit of a ticking time bomb. When would I get it too? I picked up breast self-exam pamphlets at my doctor’s office, but they all featured a senior citizen on the cover and were very medical looking, even a bit scary. I remember one featured a water-color illustration of the naked back of a woman turned into a dark, shadowy corner to check her breasts. I opened it up and it was a three page fold-out of tiny black type—a thesis dissertation on how to check your breasts! Needless to say, I tucked it in a drawer and eventually chucked it out.

These drab brochures weren’t inspiring me so how would they motivate my friends and other young women who didn’t even have a family connection to breast cancer? Another challenge: I wanted to raise funds to fight breast cancer but pink ribbons, angel pins and traditional galas and golf tournaments weren’t for me. I saw the need for a breast cancer organization that was relevant to my generation.

In March 2001, with the help of an incredible group of passionate, energetic and creative people, Rethink Breast Cancer was born. Our mission: to help young women (and men!) concerned about and affected by breast cancer.  I was really inspired by the AIDS movement of the early 90s—with its bold, in-your-face messaging and hip and cool fundraising events. Why did breast cancer always have to be wrapped in a pretty (sometimes even tacky) pink ribbon?

By working with the fashion, music and design industries, we aimed to tackle the serious issues of breast cancer in a bold, creative, upbeat way. Today, Rethink Breast Cancer has a roster of events and initiatives, everything from Boobyball to Breast Fest, the world’s first breast cancer related film festival.

What’s also exciting, Rethink Breast Cancer has evolved from an awareness movement and funding cutting edge breast cancer research to also providing much needed emotional and practical support for young breast cancer patients.

Young women with breast cancer can face unique challenges—delayed diagnosis, aggressive treatment, fertility, child care and financial obstacles. Yes, the numbers of young women diagnosed each year are a small percentage of the total number of breast cancer cases. But, the needs are very real and Rethink is all about filling the gaps. We see ourselves as specialists. The message we send to the women we serve: We act your age! Often it’s the small details that make a difference. We’ve taken support out of the hospital setting and have tried to create support environments that have a young woman in mind—sunny lofts, cool retail spaces etc.

Over the years, and with incredible help from partners and volunteers, we’ve been increasing the number of support programs we offer to young women.

When I think back on how Rethink began almost ten years ago, I realize how far we’ve come. But we still have a long way to go. The explosion of Social Media spaces has made it easier than ever for people to share their stories, have their voices heard and be a part of an on-line community. We are very busy right now revamping our website, blog and Facebook fan page. It’s all about staying relevant and current, right?

Rethink started from my own personal experience but  it’s the hundreds of young women that have gotten involved that are driving our organization. It’s their stories that are shaping Rethink’s future. Please share yours with us at rethinkbreastcancer.com

In essence of graduation season, LBBC is highlighting young women and students who are in some way affected by breast cancer. Could you benefit from programs that are dedicated to young breast cancer survivors? Are you a young woman who is a loved one of someone affected by breast cancer? Share your thoughts on our facebook page.

LBBC’s View on Self Breast Exams

This entry was written by Janine E. Guglielmino, LBBC’s Director of Information and Strategic Initiatives:

The U.S. Preventive Services Task Force (USPSTF) caused a second firestorm in November when it recommended against teaching breast self examination (BSE). They found that BSE does not decrease the number of deaths among women at average risk for developing breast cancer, and therefore its potential harms (unnecessary biopsies, test anxiety) outweigh its possible benefits.

USPSTF “grades” its recommendations (A, B, C, etc.); BSE received a “D” grade, meaning the task force has “moderate or high certainty that the service has no net benefit or that the harms outweigh the benefits.” These recommendations apply to large groups of, rather than individual, women. 

The task force’s recommendations weighed heavily on my mind in the days following their release, and not just because of their implications for Living Beyond Breast Cancer. Four days earlier, I had found a lump in my own breast. I am 38 years old, have not had breast cancer and do not regularly perform BSE. I saw the mass while standing in front of a mirror.

While I waited for tests, I followed the arguments over BSE and mammography with equal levels of detachment and fear, helping our staff to work through the evidence to formulate LBBC’s recommendation. What we knew, but what many of you may have discovered for the first time, is that questions about the effectiveness of BSE are not new. The American Cancer Society does not endorse BSE, saying it is an “option” for women, starting in their 20s. On its Web site, the National Cancer Institute writes that “formal instruction and encouragement to perform breast self-examinations leads to more breast biopsies and to the diagnosis of more benign breast legions.” And the National Breast Cancer Coalition says that “it is unclear whether BSE aids women in discovering breast cancer…[and] resources would be better spent on funding more research studies to identify interventions that really work, such as better ways to detect, treat and prevent breast cancer.”

Are these trusted sources telling us to ignore the bumps and lumps in our breasts? Of course not. That would be ridiculous (as well as irresponsible and patronizing). What they are saying is that clinical trials have shown BSE to be ineffective at the two primary goals of cancer screening: preventing death and finding disease early. By the time we feel (or see) a mass, by a formal method like BSE or by any of the informal ways we touch our breasts, the biological makeup of that mass has far greater influence on our survival than how we found it.

Even though I knew the facts, I questioned myself. Could I have found the mass earlier? Would it have made a difference? We all struggle with these questions, but in clinical trials the numbers simply don’t add up. At LBBC, our view is that each woman should decide for herself. Some questions to consider:

 

  • Do you have a family history of breast or ovarian cancer that puts you at higher risk?
  • Do you feel educated about what to do if you feel a change in your breast?
  • Do you know what your breasts normally feel like?
  • Do you handle your breasts frequently and intimately enough to notice changes?

That last question is not irrelevant. Formal training in the handling of our breasts—which is, after all, all BSE is—should be unnecessary, but often we are squeamish about touching and discussing our breasts. LBBC encourages you to speak openly with children, at home and in schools, so they learn early in life what their breasts normally feel like and can easily recognize potential problems. As advocates, we need to do a better job of raising awareness of the importance of knowing our own bodies.

In late November I got the happy news that I have a sebaceous cyst, a harmless mass made up of fat. By then, my colleagues and I had already worked through LBBC’s formal position. I feel confident about that position professionally, but I feel equally good about it personally.

By the way, it wasn’t a mammogram that gave the radiologist a definitive finding about my cyst. It was an ultrasound.

How do you feel about the task force’s recommendations on breast self-exams? Continue the conversation here or on Facebook!