In 2008, I was diagnosed with HER2+ breast cancer. What followed was a blur of a year filled with additional tests, chemotherapy, Herceptin, surgery, radiation, and the start of a new life.
When I was diagnosed, I kept my cancer secret from everyone except my immediate family and a handful of close friends. I wanted to handle everything to prove to myself that I was stronger than my disease.
For me, this strategy worked. I was able to put away my cancer when I wasn’t at a treatment. I could go to the grocery store or my Zumba class without having to talk about it. My plan was to survive treatment and walk away from my illness unchanged.
But, cancer changes you. Besides the obvious physical changes and disruption of your routine, you come away with a new appreciation of your family, your doctors and nurses, your friends, and your fellow cancer survivors.
My Book, Dancing in the Rain: Surviving Breast Cancer and Learning to Embrace Life, is about five cancer survivors. It’s my story as well as the stories of four fellow breast cancer survivors I met at a Zumba fundraiser for Susan G. Komen for the Cure in downtown Pittsburgh.
Lisa, Susan, Margie, Cat and I exchanged stories. Maybe it sounds cliché, but dealing with a serious illness is a journey. I was so impressed with these women and their individual journeys to wellness I felt compelled to write the book.
I wanted people to know how it feels to receive a cancer diagnosis. Cancer isn’t just one person’s illness; it affects families. Families cope in different ways. Some family members can’t cope or choose not to, and they walk away. Sometimes the betrayal is obvious, but often it is an emotional betrayal. Sometimes families rally around you in the most exceptional ways.
As another October rolls around I thought about my fellow survivors and decided to check in to see how they are doing and find out what their experiences mean to them now – six years after they agreed to share their stories. Two of my fellow survivors, Lisa and Susan, chose to update you in their own words.
Our stories appear in the same order as the book.
Lisa was diagnosed with invasive ductal carcinoma (IDC) at 44. Her grandmother passed away from breast cancer and her sister was diagnosed with IDC and invasive lobular carcinoma (ILC). Lisa chose to have a bilateral mastectomy (removal of both breasts) with immediate reconstruction using expanders and new cohesive gel implants (nicknamed gummy bear implants) which were available in clinical trials at the Cleveland Clinic. After a brief recovery, Lisa started chemotherapy. She did not require radiation, and she decided against taking the recommended 5 year Tamoxifen regiment for estrogen+ cancer.
I am still thriving! In fact my 9 year CF birthday is this October 24th. Hard to believe it has been 9 years. But to be honest, I really don't think about it much. I chose to move on with life and not dwell on that. I don't consider myself sick, and I don't "worry" about it coming back. I made it regret it ever invaded my space.
Because my business is health and wellness, I always talk to people about getting healthier to prevent any type of disease. I try to encourage women and men to eat cleaner and exercise more! I had to retire from Zumba two years ago because of my knees. I already have two fake body parts, wasn't willing to get two more. LOL
In addition to my business, I am very active in rescue. I hold many volunteer positions for Pointer Rescue Organization. I chose not to let cancer define me. I do still talk with a lot of women. People who know my story and how I handled it will often contact me to talk to someone who has recently been diagnosed. I always tell them, I am an open book.
My family is still battling cancer...Mom still battling the rare form of cancer she has; Dad has bladder and kidney cancer and my sister who was diagnosed with breast cancer two weeks before me has mets to the spine, but is doing well. So I don't just focus on breast cancer awareness...I work to educate people on prevention of any type of cancer.
I guess you can say I go about living my life and don't let that little blip in my journey bother me. We are all going to die at some point...cancer MAY have been a slight glimpse into how, but I doubt it. I can't worry about that because I am too busy LIVING each day to the fullest!
Margie was diagnosed with estrogen+ non-invasive DCIS (ductal carcinoma in situ) at stage 0 at 44. Her paternal grandmother Mary passed away at 45 from a reoccurrence of breast cancer approximately 20 years after she was first diagnosed. Mary’s sister also had breast cancer. Based on her family history, Margie decided against a “wait and see” approach to her cancer and chose to have a bilateral mastectomy with immediate reconstruction. She did not require chemotherapy or radiation. Margie also decided against taking the recommended 5 year Tamoxifen regiment for estrogen+ cancer.
Today, Margie has stepped away from her diagnosis and moved on with her life. She continues to eat healthily and now runs marathons in addition to taking several exercise classes and maintaining an active lifestyle. Though she supports breast cancer research, Margie prefers to stay in the background and seldom revisits her cancer journey.
Me: After being diagnosed with aggressive HER2+ invasive breast cancer with possible lymph node involvement and Paget Disease of the breast (cancer of the nipple) at 48, I received neo-adjuvant chemotherapy (chemo before surgery) and the monoclonal antibody Herceptin because of my HER2+ status. I was estrogen and progesterone negative, so Tamoxifen was not indicated. I decided on a unilateral mastectomy with immediate reconstruction using tissue from the muscles in my back because I was facing the possibility of radiation treatments. Despite a complete pathological response to chemotherapy (there was no active cancer at the time of my surgery) I did have to have radiation, and I completed a full year of Herceptin treatments.
Me now: My marriage did not survive, but I have, and I continue to thrive. I donate a portion of the profits from the sale of my book to the local chapter of Susan G. Komen for the Cure. I no longer attend cancer awareness events, so I can care for my youngest son, who has an incurable muscle wasting disease, but I give my phone number to women fighting cancer, and I’ve spent many hours letting them talk about their journey and sharing my story. We all want to keep cancer in the rear view mirror and not be defined by it. Hair grows back, our bodies heal and with the help of fellow survivors we find our new normal and come back stronger than before. Every birthday is a little more special. I’ve been able to see my three sons all graduate high school and college. My oldest son is married and he and his wife are expecting their first child. Sometimes life falls apart, but it always comes together in a new and awesome way if we let it.
Susan was diagnosed with Stage 1, Grade 3 (aggressive), invasive ductal carcinoma in one breast at 37. She had a family history of breast cancer and had a baseline mammogram at 35. She was estrogen and progesterone receptor positive and HER2+. Because her tumors were small and close together, Susan opted for a lumpectomy (removal of the breast tumors and a rim of normal surrounding tissue) with chemotherapy, Herceptin and radiation. She also took the five years of Tamoxifen.
I am officially 11 years and 2 months out from the diagnosis. I still continue to celebrate the anniversary, but the one that was most meaningful to me was by far the 10 year. I had it in my mind that making it out to 10 years was a really big deal, and if I could just get to that point, things would be ok. I did the race for the cure for many years on Mother’s Day since then, and only in the last several I have made a decision not to. I guess I just wanted to reclaim Mother’s Day to be more about making brunch than I wanted it to be about remembering my cancer. I just wanted to get the normal things back to normal I guess.
I am pretty private about my cancer experience, and in contrast I have a few friends that have been diagnosed over the years, and I am so impressed by their courage to really put it all out there for everyone to experience with them. We both know that there is no right or wrong way to get through cancer, and I’m thinking that the sharing is probably very helpful. I heavily relied on an online support group over the years, Her2support.org. I am still a member of this on line community today.
Reflecting back now I recognize what a big hurdle it was to get over and to the other side of cancer. I try not to dwell on it much, but each year when I have my mammogram I fall apart a little on the inside. It is a day I dread. Inevitably they always request second pictures which panics me in the waiting room where I sit silently and hold it all in. In all of these years, not any one of these second picture requests has ever picked up a problem. I feel so lucky that way.
I do often feel thankful that I have been able to see my children (now 20 & 17) grow and become young adults. It gets me very emotional to consider how much of their beautiful lives I may have missed.
My oncologist died unexpectedly this year, which has left me a bit bewildered and feeling like I’ve been orphaned by the cancer community. I suppose I will look at it as though I will never again need the services of an oncologist.
My best advice is to get a mammogram, and if there is any family history demand one early. I was only 38 when I was diagnosed and my maternal grandmother also had breast cancer. Early screenings save lives, just like all the advertisements say.
My final piece of advice is to live a healthy active lifestyle. Take great care of yourself, travel as much as possible… Life is so short.
Cat chose to have a prophylactic bilateral mastectomy in her early forties after her mother passed away from Inflammatory Breast Cancer (IBC), a rare highly invasive breast cancer. Cat had struggled for years with non-specific breast pain and dense breast tissue which made her mammograms difficult to read. Unable to find the source of her pain and given the poor prognosis of IBC, Cat and her doctors decided to be proactive. Pathology reports showed very early signs of cancer, so Cat dodged a major bullet. Cat felt fortunate, but she also experienced a form of survivor’s guilt because she “escaped chemo and radiation.” She dedicated her life to raising money for research and breast cancer awareness holding Zumba events in the Pittsburgh area. Because of health issues unrelated to cancer, Cat was forced to scale back her events and recently retired as a Zuma instructor. She is still a busy professional and a happily married grandmother. As the years go by, Cat has become more comfortable with her decision and has touched the lives of hundreds of women living with cancer in the Pittsburgh area.
Three other women were instrumental parts of the book, Maria McCalister, who planned the first Zumba fundraiser for cancer here in Pittsburgh, Debbie Colditz my Zumba instructor and close friend, and Maritza Balta who has in addition to her friendship, helped proofread and edit the book.
Maria is still a powerhouse for fitness and healthy living. She teaches Zumba, travels, and enjoys life with husband Phil. I’m not sure she will ever know how much she influenced my life and the lives of others. The fundraiser quickly outgrew the Pittsburgh area and I’m happy to report events are being held all over the world raising needed funds for treatment and research and promoting breast cancer awareness. On behalf of all the women who will be diagnosed with breast cancer this year and millions of survivors worldwide – thank you for making a difference.
Maritza's two children have both started college, and she has been doing some consulting work. She's never too busy to help a friend, and she also acted as proofreader and helped edit my second book, His Life's Work.
I’m saving Debbie for last because she has been my rock. She called me almost every day during my treatment to check on me and keep me laughing. Debbie recently celebrated her 10th anniversary as a Zumba instructor at the WROC and the Peters Township Recreation Center. She has created a family at Zumba, helped hundreds of women lead active healthier lives, and counseled dozens of women through deaths, divorces, illnesses and especially breast cancer. She and her husband, Steve, have instilled those caring values in their sons and they are an amazing family.
If you want to know more about breast cancer and my amazing friends, Dancing in the Rain: Surviving Breast Cancer and learning to embrace life is available at https://smile.amazon.com/Dancing-Rain-Frances-G-Joyce-ebook/dp/B005R51ME6/ref=sr_1_21?s=books&ie=UTF8&qid=1507924143&sr=1-21&keywords=dancing+in+the+rain.
Photos for this article were taken from my book and my personal photos or contributed by the subjects in this article.