Waiting for Authorization for Breast Reconstruction

Waiting for Authorization for Breast Reconstruction It can take enormous patience for breast cancer patients who are waiting for authorization for their breast reconstruction procedure. I was once there. Now I am an advocate for all options of breast reconstruction after mastectomy. I interact with patients daily. Many times, their questions are a catalyst for topics to write a blog. Amplifying our voices to educate is part of patient advocacy responsibility. I recently received an email from a patient who was denied coverage for a revision phase of her reconstruction. Her plastic surgeon even wrote an appeal, but it was still denied. She reached out to me for help and suggestions about what to do. I take a deep breath when I get these emails and step out of my breast cancer survivor role and put on my patient advocate hat. I don’t want to offer false hope, but I Continue Reading →

A 3-year Anniversary: Blogging About Breast Reconstruction

A 3-year Anniversary: Blogging About Breast Reconstruction I am celebrating a 3-year anniversary blogging about breast reconstruction on March 17, 2018. When Did I Begin Blogging About Breast Reconstruction? It began as a cathartic experience after having successful DIEP flap surgery in early December of 2014. While I was at home healing, the events and challenges I faced the year after a second breast cancer diagnosis began to flood my thoughts daily. I put my M.Ed. program on hold to focus on my health. I met with a friend and artist in early January, 2015. We sat down together and planned two things; the artistic backdrop and platform for my blog on WordPress and an opening date, March 17, 2015. We are both Irish and it was a good goal. We met many times afterward to hammer out details. We hit our target date and celebrated together over a pint Continue Reading →

Caregiver Burnout: Who Is Your Wing Man?

Caregiver Burnout: Who Is Your Wing Man? I have been watching as tragedy unfolds on TV these past two weeks with discussion and protests of yet another violent act in the classroom and brick and mortar I spent so many years and hours in as an educator before opening my Foundation. And yet, it is a blur to me as it runs across news feeds in the hospital room and rehab facility I have spent so much time in the past two weeks. This part of my Journey began February 14, Valentine’s Day. My sister picked me up from the airport and we went straight to the hospital to begin my current role as caregiver to my Dad. The past month has been an emotional mixture for me. This is the first time I have been able to write a blog for weeks. My life was filled to the brim Continue Reading →

Breast Cancer Patients Paying It Forward

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 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

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, on my 62nd birthday, after surviving breast cancer twice, I am once again experiencing the gripping fear of PTSD after breast cancer. 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. It happens when I go for routine tumor markers. I did that today and I wait for the results with fear; fear so many breast cancer patients experience. The wait, the PTSD, it 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 Continue Reading →

LIVESTRONG Class Assessment: Ready to Roll

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.  Continue Reading →

Livestrong First Class: Exercise after DIEP flap Breast Reconstruction

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 Continue Reading →

Delayed DIEP flap vs. Immediate Breast Reconstruction

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 that puts them at high risk for breast cancer and through the decision to move forward with breast reconstruction. Those Range of Emotions Vary Here is a list that I often here 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 relief knowing the Continue Reading →

Livestrong: Exercise after DIEP flap Breast Reconstruction

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 Continue Reading →