Updated: Nov 10, 2019
Where We’ve Been
Survivingbreastcancer.org kicked off breast cancer awareness month in historic Philadelphia. It was the first time we were exhibiting at the Living Beyond Breast Cancer conference and we cannot wait to return next year.
We met amazing men and women, attended sessions to learn about the newest treatments and latest research and had some deep dive conversations about yoga, meditation, and the power of writing to heal. With our focus on health and wellness, it was no surprise we became fast friends with several organizations who are helping those diagnosed with breast cancer (check out Wellness Warriors, 2Unstoppable, and Casting for Recovery to name a few).
One of the highlights from the conference was meeting Charlotte Matthews, a breast cancer survivor, poet and faculty member who runs workshops to illustrate the power of writing as a tool to help those diagnosed with cancer by sharing their stories. I highly recommend checking out her latest publication Truth: Voices of Women Changed by Cancer and our exclusive interview with the woman behind the typewriter.
Thanks to RedSparks Films, the below trailer launches Matthew's project based on one of her poems about her diagnosis with stage 3 breast cancer at the age of 39.
A powerful conversation arose when speaking with a woman about breast cancer and the number of times we said “if only I had known” or “I wish I knew that ahead of time”. This sparked our interest as the organization StoreMyTumor which offers a private option to those who want to preserve their live tumor cells! This enables you to go back to your original tumor and have access to the information in the event you need genetic sequencing or customized vaccines. Personally, I did not know about this option at the time of my diagnosis, in fact, when I found out I had breast cancer, it never occurred to me what happens to my tumor (tissue) once they remove it. Feel empowered and ask your medical care team, what happens to the tumor post biopsy or post-surgery? It’s important to know where your tissue goes and how it is utilized, after all, it is yours!
On the Road Again
What started off as a small get together in the Boston area with survivors, caregivers, and friends, has quickly become one of our Signature programs. Our Survivors and Friends Meet and Greets.
While the name of the program is consistent, each city we visit takes on their unique personality! In Philadelphia, we hosted a Sunday Brunch. We were thrilled to have medical oncologists and researchers from Temple attend as well as collaborators from the Philadelphia/Wilmington FB group partner with us to host a celebratory brunch. Highlights include survivor stories and meeting the face behind the blog BeautyThroughtheBeast, Chiara!
Next Stop: Chicago
There is no better way to say “Cancer didn’t win” by checking off a buck-list item running a marathon! Yes, going to the infusion center week after week, daily rounds of radiation, or the hours of bedrest recovering from surgery certainly have similar qualities of a marathon, but the joy (and pain) one endures in putting in the long hours of training and completing a marathon is like no other! And that’s exactly what these breast cancers thrivers did!
An open house was held for our Chicago-Based breast cancer Survivors and Friends meet and greet in the home I grew up in. We were honored to have women from all over the Chicagoland area attend, donate, and exhibit their breast cancer products (Thank you Medical ID Fashions and Complete Shaping). Additionally, we got to connect with amazing women like Maira Luisa who is the founder of Courage for the Soul who provides scarves to those who are undergoing chemotherapy.
The next morning these brave souls were off to run 26.2 miles and celebrate life one step after the other! Special shout out to Nicole Mancini (BC Survivor) who never left my side the entire race, ensuring that as we started together, we would finish together! Talk about a fabulous teammate! Cancer didn’t know who it was up against, that’s for sure!
Finally, the energy in Chicago continues to be vibrant. After I had left town, I was thrilled to see the Chicago community gather for the release of Ginger The Movie
Back to Beantown
Taking a Look at Breast Cancer Disparities:
We know that breast cancer is pervasive, but did you know that black women are 43% more likely to die of breast cancer than white women, according to the Breast Cancer Research Foundation . Other disparities include those who identify as LGBTQ. While more research is needed, according to the Young Survival Coalition, this population tends to engage in more breast cancer risk behaviors such as smoking, alcohol consumption, and obesity.
Continuing to press the conversation forward, have you ever considered the role culture plays in a breast cancer diagnosis? What if English was not your first language? Do you have access to translators to explain to you your pathology report? Would your culture be accepting of your diagnosis or is it something you keep close to the vest and never talk about? How does a culture, gender, race, identity and a diagnosis impact cultural norms and expectations?
A blog specifically on these topics is forthcoming as it cannot be summarized or taken lightly.
Themes include selfishness, divorce, lack of support, depression, anxiety, fear of finding out you have cancer so better to not get screened.
SurvivingBreastCancer.Orgs’ Survivors and Friends Meet and Greet
Half meet and greet, half speaker’s bureau, half fundraising, half building local community support, I don’t actually have a name for what we did, but all I can say is that it was a huge success and give thanks to our sponsors at Benchmark Independent Living for hosting us!
We heard survivor stories, information from plant-based advocate, Abby Power, and were led on a guided meditation and introduced to “Laughing Yoga” from Soul-Re-engineering’s Claudia Gallo. The next day, we gave thanks to mother earth and sang and chanted in the Lakota native American language because the universe is powerful and we want to stay in its positive grace.
Between Paint Night at Tufts Medical Center and wonderful conversations with community members, we concluded breast cancer awareness month with a fundraiser at Club Pilates at Assembly Row. Building strength, toning and stretching are great exercises post-surgery and can help prevent lymphedema if you had your lymph nodes removed. It was a fun day raising awareness and being grateful for what our bodies CAN do!
Where We Are Heading
If you’ve gotten this far I’m thrilled because you will definitely love where we are going next and how you can get involved and join our community! Here’s a sneak peak of things to come for 2019:
Survivors and Friends Meet and Greets are heading to Atlanta! Stay tuned for dates and details. (More locations coming soon!)
Survivingbreastcancer.org will be launching our podcasts where we share survivor stories, meet with leading medical professionals, share inspirational meditations, affirmations, and tools for assisting the caregivers, plus more! Interested in being a guest on our PodCast, we’d love to hear from you. Contact William to schedule time for us to connect.
While we love our 1 day meet and greets, the power of our community needs more than just a few hours. Stay tuned as we plan our first Survivingbreastcancer.org Retreats! Looking for something in particular? Let us know, these retreats are for YOU!
to complete a quick survey so we can be sure to meet the needs of our community members.
Thank you to everyone who believes in our mission! We were energized by what October has brought us. We will be strategizing, reflecting, and reenergizing during the upcoming holiday season and cannot wait to hit the road again in 2019!
The SBC Team