Category: Personal Stories

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 →

1900 Patients Share Stories About Breast Reconstruction

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Three short years ago in the summer of 2015, I opened a Facebook page dedicated to serve the breast reconstruction community. The Facebook page, https://www.facebook.com/groups/diepcjourney/ grew organically by word of mouth. We started out small, as so many new social media sites do. It is growing daily and now 1900 Patients Share Stories About Breast Reconstruction. What Do We Share? Think about this. You have just been diagnosed with breast cancer. Now you face the tsunami of information about to flood your brain; lab reports and waiting on results, treatment options, surgery, lumpectomy, mastectomy. Some days you feel overwhelmed, depressed, anxious, or even jubilant. Who will understand all these feelings? Who do I talk to who has been on this Journey? Think about this. You are told your best treatment option is to have a mastectomy. Perhaps, for peace of mind, you decide to have a prophylactic mastectomy because you 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 →

What Do Breast Cancer and BRCA Friends Share in Common?

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I know that Heather Barnard and I share a lot in common! We are both educators. Breast cancer has affected Heather and me. Heather and I have had a mastectomy. Heather and I had breast reconstruction. We both write blogs about our breast reconstruction experience. Finally, and most coincidentally, we had the same plastic surgeon perform our breast reconstruction. What makes our friendship unique? We have never met in person. Heather and I live over 9,000 miles apart. Our shared commonalities, however, have bridged those miles and made us friends. Her Twitter handle says it all, @expattravelmom. She teaches in Singapore and in her off time travels extensively with her husband and three great children. I had my DIEP flap breast reconstruction in December of 2014. Heather had a prophylactic mastectomy with immediate implant breast reconstruction in June of 2015. Dr. Chrysopoulo was our connection. Heather would message me asking Continue Reading →

ERAS Protocol Breast Reconstruction

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A little over a year ago I learned about ERAS protocol as it pertains to breast reconstruction from the plastic surgeon who performed my DIEP flap. ERAS, Enhanced Recovery after Surgery, protocol was not in place at the time I had breast reconstruction in December of 2014.  I wrote a blog about our conversation and what I learned. I have been reading several social media posts about ERAS and the benefits to patients. One study shared recently on Twitter states in the conclusion of the study: Conclusion: Enhanced recovery pathway program implementation should be considered as the standard approach for perioperative care in autologous tissue-based breast reconstruction because it does not affect morbidity and is associated with accelerated recovery with reduced postoperative opiate use and decreased length of hospital stay, leading to downstream health care cost savings.  ~ Journal of the American Society of Plastic Surgeons ERAS Protocol Benefits Observed I Continue Reading →

Patient Advocacy: Shared Decision Making in Breast Reconstruction

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When does your voice matter in patient advocacy in the shared decision-making conversation of breast reconstruction? The sum of events helps me answer this question in my work as a patient advocate. I have a voice, true. However, my voice only becomes amplified by the support, connections, and personal interaction I make through social media with those interested in this topic; plastic surgeons and patients who have lived the experience. Shared decision making in breast reconstruction after mastectomy means a process the patient and plastic surgeon engage in, resulting in the choice the patient believes is in their best interest. It includes but is not limited to the suggestions made by the plastic surgeon based on skill and years of expertise, being given all options for breast reconstruction, discussing risks and complications, and listening to and respecting the voice of the patient and what they bring to the conversation. This Continue Reading →

A 3-year Anniversary: Blogging About Breast Reconstruction

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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 of Guinness. Why Did I Begin Blogging Continue Reading →

We are Journey Strong! #IWD2018

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We are Journey Strong! #IWD2018. We are Journey Strong and today we celebrate each other on #IWD2018! We do not wear black dresses on the red carpet in solidarity at televised award shows. We do not march the streets holding signs to promote our cause. But make no mistake, we are a band of women with strength, grit, compassion, and a sense of solidarity for each other few know about. We are a group of over 1,600 women who have all faced breast cancer and losing our breasts after mastectomy. The only garments and accessories we wear in solidarity are compression garments and surgical drains. Some of us have become entrepreneurs on each other’s behalf to develop products to hold those drains with greater ease after mastectomy or breast reconstruction surgery. Some of us have opened nonprofit organizations to support one another financially, spiritually, through education, or counsel. Others have Continue Reading →

Breast Cancer Patients Paying It Forward

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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 →

Meet my Friend, Patient Advocate & Four-time Breast Cancer Fighter

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This is Terlisa Sheppard. Terlisa is my friend. She is also a patient advocate and four-time breast cancer fighter. Terlisa and I met this past summer at the Project LEAD Institute graduate program along with other amazing patient advocates. I was blessed to see her again in December of 2017 at the San Antonio Breast Cancer Symposium (SABCS) and we put it on our schedule and committed to make this video together. I will visit this blog frequently to listen to her Journey of being a young mother diagnosed with breast cancer and now living daily with the disease. Meet my friend, patient advocate, and four-time breast cancer fighter. Are you inspired? I think you should be, I really do. To know cancer is in your body in various organs and continue to look at life with a blessed, grateful disposition is nothing short of God-given, super-human constitution. I am Continue Reading →