Category: News

Going Home: A Breast Reconstruction Advocate’s Story of Love and Loss

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Fall has been a roller coaster of emotions for me from love to loss. There are times in our lives when we seem to be floating through events, whether good or bad, simply putting one foot in front of the other and moving forward. I garner strength surrounding myself with the love of friends and family during these times. This is the account of my Journey and the symbolism behind the phrase, “Going Home”. The moving van pulled up to our home in late October to load and pack our household goods. We packed our car with as much as we could cram into it for the 1650 miles road trip to our new home. The evening before we left, I received a phone call from my Mom. I choked back tears as I talked to her about Dad. The hospice nurse assessed his vitals and we knew he had Continue Reading →

Sharing the Emotional Night I Was Awarded Patient of Courage

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Some moments in life are forever etched in your memory. The evening of September 28, 2018, at the Navy Pier in Chicago is one of those moments for me. I want to share the emotional night I was one of three recipients awarded the Patient of Courage from the American Society of Plastic Surgeons at their annual meeting, PSTM18. The Anticipation Was Worth the Wait! I received news in the spring I was the 2018 recipient of the Patient of Courage Award. I was nominated by the plastic surgeon who performed my DIEP flap breast reconstruction, Dr. Minas Chrysopoulo of PRMA in San Antonio. The process was a bit like waiting for Christmas, keeping the secret, enjoying all the preparation, and finally celebrating the evening. The fantastic ASPS media crew scheduled a trip to my home in Arizona mid-August to film my story in a YouTube video. Until the video Continue Reading →

Reflecting on the Pink of October and Breast Cancer

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October and the color pink have been symbolic of breast cancer for many years. It is a color both embraced for its meaning and at the same time despised by what many consider over use and misuse. I understand since I have survived breast cancer twice myself. This year brings me to a personal point of reflection on the pink of October and breast cancer. It has been one of the most rigorous months I’ve experienced in quite some time; mixed with emotions of gratitude, anticipation, new friendships, farewells, sadness, and letting go. The Shared Decision Making Panel at #PSTM18 It began with one of the proudest moments of my professional career as I sat on a panel with my breast reconstruction surgeon, Dr. Minas Chrysopoulo, a dear friend and patient advocate colleague, Kirstin Litz, and a new friend Dr. Hani Sbitany speaking about the importance of shared decision making Continue Reading →

5 Things to Share: My Delayed DIEP Flap Breast Reconstruction

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I am often inspired to write while reading blogs from other sites, reading research papers, or after speaking to patients who ask questions about my experience having delayed DIEP flap breast reconstruction. This week is a mix of all three. I saw a post on the Facebook page from the plastic surgeon I chose for my surgery. The title of the blog post read: Patient Reported Outcomes After Immediate and Delayed DIEP Flap Breast Reconstruction. ~ PRMA Plastic Surgery The blog references an evidence-based study from Plastic and Reconstructive Surgery. It states: The BREAST-Q is an universally accepted tool for evaluation of quality of life and satisfaction in breast surgery. The aim of our study was to identify differences in patient-reported outcomes in immediate and delayed reconstruction with DIEP flap.  ~ Plastic Reconstructive Surgery  During conversations as a patient advocate, I speak to women who ask me to describe what my Continue Reading →

Who is Responsible? Aesthetic Outcomes of Breast Reconstruction Surgery

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It is an important topic to discuss. Who is responsible for the aesthetic outcomes of breast reconstruction surgery? The headline in the September 6, 2018, online article from Cosmopolitan reads: These Cancer Patients Wanted to Get Rid of Their Breasts for Good. Their Doctors Had Other Ideas. It is an emotionally filled article from women who chose to go flat. These women woke up after surgery with results that left them angered, saddened, disappointed, and fighting a battle to find out how to change things. In fact, on September 8, 2018, the article mentioned: … she’s organizing the first Not Putting On a Shirt Nationwide Walk in Cleveland, Ohio, in which women will join her to march topless and raise awareness around the issue. A sister march will be held in Los Angeles in the same day. The article speaks of women who chose to remain flat after their mastectomy Continue Reading →

Breast Cancer: Why We Choose to Be Patient Advocates

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I recently took part in an online meeting with two friends and fellow patient advocates. We met through the Project LEAD Institute program in July of 2017. Why did we apply for scholarship and attend this intensive week of the study of breast cancer biology? We all want further training to improve our advocacy knowledge base, so we could better serve our communities. The focus of our discussion at our online meeting; “Why do we choose to be patient advocates”? Kirstin, Jennifer, and I remain close friends. We talk frequently via phone chats, texts, and emails and ask each other for advice. We seek resources when we cannot find them for our community who might be in need. Opportunities for new learning, conferences to attend, and sharing new studies are just a few of the advocacy tools we share with each other to stay on top of our game. Our Continue Reading →

Who Inspires You as a Breast Cancer Survivor?

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There are endless topics to write about when you blog as a two-time cancer survivor. Most weeks are planned topics, some topics are fun, and then there are delightful moments in your week leading to an unanticipated topic. You are inspired, and you know what the topic of your blog will be for the week. Who inspires you as a breast cancer survivor? This week it was my two friends, Jim, and Sean, who I met in my Livestrong class at the local YMCA. Both men have survived brain cancer. Both men endured physical impairment and fought to make a comeback to their now “new normal” life. I was at the gym doing my weekly workout. I had completed my cardio on the elliptical machine. I was finishing on weights. I do weights three to four times a week. The prescription I am on to keep my cancer at bay Continue Reading →

I Had DIEP Flap. Do You Know What That Is?

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I Had DIEP Flap. Do You Know What That Is? Picture this scenario. You walk into a physician or health care provider’s office after having DIEP flap breast reconstruction. They ask you to discuss your current health and why you came into the office for a visit. A standard question, right?  You are in a gown sitting on the exam table with only your underwear on under the gown. You know they are going to do a full exam and ask you to open the gown. Before they begin the exam, you say, “I had DIEP flap. Do you know what that is?” The answer is often one of two replies, “Oh yes, I see. You had a TRAM Flap.” Or, “No, I have no idea what a DIEP flap is.” This is when the education begins. The physician says, “Well, let’s take a look.” I open my gown and Continue Reading →

Breast Reconstruction. Taking Control Despite the Risks and Complications

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Patients who chose breast reconstruction often feel they are taking control despite the risks and complications associated with the surgery. I hear comments from patients after having breast reconstruction who have encountered complications including, seromas, wound healing issues, hernias, multiple surgeries, and yet, are very happy with their decision to reconstruct their breasts. Many feel it gave them control. Why? It gave them the opportunity to rebuild a body part lost after being diagnosed with breast cancer or deciding on prophylactic surgery due to a genetic mutation. An article in the New York Times reported on complications after various types of breast reconstruction surgeries including both implants and numerous forms of autologous (using your own tissue) reconstruction. A multicenter cohort study referenced in the article in JAMA stated: Reconstruction may be associated with a high risk for complications, but successful reconstruction may still be achieved in most patients. Women electing Continue Reading →

Why are We Spending So Much Time with Insurance Calls?

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I truly believe this is a question both patients and physicians ask themselves quite frequently; Why are we spending so much time on insurance calls? This week alone, I spent upwards of three hours battling my insurance company to reinstate a medication that has proven to work for me for the past four years and suddenly is no longer covered by them. I found this out at my oncologist’s office recently when I went in to get my Prolia injection. Since my second breast cancer diagnosis in 2014 I have successfully, with little or no side effects, taken this injection to prevent bone loss from the medication I am on, AI, to prevent my cancer from recurring. One of the side effects of the AI is bone loss and why I was prescribed Prolia. The Prolia was working! I was even on their Patient Co-Pay Program greatly reducing my out-of-pocket Continue Reading →