Breast Cancer Patients Paying It Forward

I have met so many breast cancer patients paying it forward after they have been diagnosed with the disease. I see these pay it forward breast cancer survivors writing blogs and sharing their lived experience. Some breast cancer survivors have opened nonprofit organizations to support and assist others going through healing and recovering from the devastation this disease can have on a person. Still others have become fierce advocates. They research and explore the science of breast cancer, clinical trials or they “go to the hill” to make policy changes in breast cancer care. It is inspiring and honestly keeps me focused and stimulated to continue my own DiepCFoundation work. I was recently the beneficiary of a breast cancer patient paying it forward from her own nonprofit organization, Nadia Strong, Beautiful Beyond Breast Cancer. Nadia’s mission is to empower women through breast cancer with her gift of photography. She invites Continue Reading →

Christmas Week: A New Breast Cancer Connection

Christmas Week: A New Breast Cancer Connection I was privileged, during this week prior to Christmas, to make a new breast cancer connection. Coincidentally enough, I learned about Nadia through another breast cancer friend and colleague, Barbara Jacoby. Barbara posted an article on social media about Nadia’s generous work with breast cancer patients through her love of photography. I read that Nadia was right here in my own back yard. I reached out to her for a meeting. As is the case with many breast cancer survivors I speak with, the conversation began with an immediate hug and a feeling of connection. We both encourage moving beyond a breast cancer treatment in our own communities through our separate nonprofit foundations, DiepCFoundation.org and NadiaStrong.org. The purpose of our separate yet similar Foundations seem to collide with the same message: We encourage women and men to move beyond the diagnosis and feel Continue Reading →

The Gripping Fear of PTSD after Breast Cancer

This blog is long overdue. I like to write when I’m clear headed and have done research on the topic I am writing about. Not today. Today, after surviving breast cancer twice, I am once again experiencing the gripping fear of PTSD after breast cancer. It happens when I go for routine tumor markers, scans, or experience a new ache or pain. Today is emotional while I wait on test results, but I couldn’t feel more determined to finally share why PTSD feels like a choke hold around my throat.  Today I wait for the results with fear; fear so many breast cancer patients experience. The wait, the PTSD, all comes with the heavy burden of hearing you have breast cancer. Our Responsibility as Patient Advocates I spoke to a friend and colleague yesterday, a fellow patient advocate, about our responsibility to share our lived experience and voices with the Continue Reading →

LIVESTRONG Class Assessment: Ready to Roll

Last week at our Livestrong class we had personal assessments and now we’re ready to roll.  We broke into groups to assess endurance, balance, flexibility, and strength.  This was a baseline assessment to track our progress through the three-month class. Since we divided into small groups with one trainer for each group, it was great to see the support and comradeship among class members.  We are all at different levels of treatment, recovery, and survivorship. There is breast cancer, lung cancer, melanoma, and brain cancer survivors. Some are using walkers or a cane for balance while others are former marathon runners who inspire me with their desire to push their physical limits at the YMCA program. Our trainers carefully watch each participant to keep us all safe within our own personal goals and boundaries. Endurance was tested with a timed three-minute walk around cones.  You could go as fast or Continue Reading →

Livestrong First Class: Exercise after DIEP flap Breast Reconstruction

Today was the first class of the Livestrong program.  I am a patient advocate for DIEP flap breast reconstruction and decided to document various points during this three-month program to give others in my community an idea of what to expect.  I do know each program is set up a bit differently and not all YMCAs across the country have the program.  I was told today it is worth calling the Livestrong Program to see if there is another facility in the area other than the YMCA.  They might be doing something similar. Today’s agenda at my YMCA: Meet and greet: Introduce yourself by saying something positive that has made you smile and happy in the past six months. My response: “My grandson, because he always makes me smile!” Filling out forms: The forms will help the trainers assess our various levels and abilities once we begin personalized training. T-shirts: Continue Reading →

Delayed DIEP flap vs. Immediate Breast Reconstruction

Having delayed DIEP flap breast reconstruction and waking up with breast after being a breast amputee following a mastectomy is different for those who have immediate breast reconstruction. Having breast reconstruction of any kind due to breast cancer or a gene mutation is a fierce undertaking.  The women I speak to planning and recovering from surgery go through a range of emotions from diagnosis, finding they carry a gene mutation putting them at high risk for breast cancer and finalizing the decision to move forward with breast reconstruction. Let’s discuss some differences between delayed DIEP flap vs. immediate breast reconstruction. Those Range of Emotions Vary Here is a list I often hear as I discuss and speak to those planning reconstruction: sadness in losing your original breasts fear of surgery anxiety in the aesthetic outcomes worry about the new feeling of reconstructed breasts concern about their sexuality after breast reconstruction Continue Reading →

Livestrong: Exercise after DIEP flap Breast Reconstruction

Yesterday I began my Journey with the Livestrong program as a breast cancer survivor and to increase exercise after DIEP flap breast reconstruction.  I found out about the program when I switched oncologists in early April this year.  My oncologist discussed my overall health. I expressed my concerns about being on an AI (aromatase inhibitor) and the side effects it can have including bone loss. I told her I wanted to remain strong and fit and do what I could to maintain or increase my bone density and overall strength. She handed me a pamphlet and with a smile on her face expressed her support of the Livestrong program at the local YMCA.  I called Annemarie, the Vice President of Corporate and Community Partnerships, at our local facility to get on the list to start the program. It took a couple of months of waiting before the next class started Continue Reading →

Intimacy ~ Touching your breasts after DIEP flap surgery

This blog has been sitting in my archives for quite some time.  Intimacy and touching your breast after DIEP flap surgery seems like an unabashed topic to write about. The intimacy of the content and the shared photos delayed my writing. Respect for my fellow DIEP flap sisters and touching your breasts after this surgery is not something every woman wants to do. I know this to be true because I talk to women who feel this way. I fully respect all the complexities that surround the new sensation of your DIEP flap breasts.  The purpose of my blog is to share my experience and in some way, empower breast reconstruction patients to embrace their new breasts after they have healed from surgery and to feel comfortable touching their newly reconstructed breasts. If my suggestions and story work for you, I am happy.  If they do not, I get it, Continue Reading →

Honoring my Father During my DIEPflap Surgery

This is a perfect weekend to write a tribute honoring my Father and his support during my DIEPflap surgery.  My father is in his late 80’s now so watching me go through DIEPflap breast reconstruction two and half years ago was not an easy process for him.  He knew nothing about this type of surgery.  My Dad’s generation and friends who had radical mastectomies and survived breast cancer never knew of the options to rebuild one’s breasts after they had to be removed after a breast cancer diagnosis.  It was just assumed that the loss was part of the plan and how you would continue to live your life. I gently guided Dad and Mom through the process and why I chose to have DIEPflap breast reconstruction after my second breast cancer diagnosis.  I will admit, it was tough.  His main concern for me was the length of surgery and Continue Reading →

My Double Mastectomy: Three Years Later

Double Mastectomy: Three Years Later May 15, 2014, I was sitting in a hospital room recovering from a double mastectomy.  Why am I smiling so much in the photo?  The answer: I just finished a phone conversation with my parents.  They live a little over one thousand miles from me.  I couldn’t believe how little pain I was in and how good I felt.  It was important to me that they hear my voice. Both my Mother and Father were in disbelief that I was calling them. Just 24 hours before, they were on alert at their home waiting for the phone call to let them know I was out of surgery and doing well.  When I mentioned to them I was heading home in a couple of hours after the call, they were even more surprised.  I could hear the sense of relief in their voices over the phone. Continue Reading →