The Power of Social Media

This Facebook post helped save my life.

laura-fbpost-bcam

During Breast Cancer Awareness Month in 2010, my sorority sister, Laura Figueroa, was posting messages like this one to her Facebook page daily in an attempt to reach her goal of raising $1,000 to benefit Susan G. Komen’s Miami/Fort Lauderdale Affiliate. I had never donated to a breast cancer organization before and didn’t personally know anyone directly impacted by the disease.  But I made a donation that week to support my fellow LTA sister and Florida Gators J-School alumna.

It was during that same week that I discovered a lump in my breast one evening as I was changing my sports bra after a workout. At age 30 and with no family history of breast cancer, mammograms were not even on my radar, nor was breast cancer. I often think of how I could have easily overlooked that lump as a serious symptom had it not been for this Facebook post and the subsequent email that I received from Komen after making a donation.

Because of Breast Cancer Awareness Month, I made an appointment with my primary physician. At that appointment, I learned I was pregnant. About a week later, after a breast ultrasound and biopsy, I received the call that would change my life: It’s breast cancer.

Ironically, Facebook is also the platform that I used to break the news of my diagnosis to the majority of my family, friends and colleagues.

diagnosis-fbpost

Read my interview with the Today Show on how I used social media to break the news of my diagnosis.

After my diagnosis, I used a private Facebook group to keep my closest family and friends updated on my treatment and journey. Still, I didn’t know a single person who had breast cancer, much less a survivor who had battled the disease while pregnant.

One night, after my medical team and I had determined the best course of treatment would be to undergo chemotherapy as soon as I entered my second trimester, I sent a tweet out to the Twitterverse: I am pregnant with breast cancer and I am scared. I didn’t expect a response; I simply wanted to vent. But I received a response from a woman in Indiana who had battled breast cancer while pregnant several years prior. That was the beginning of a friendship that would blossom over 2 years before Heidi and I met in person when I was honored as a Pink Power Mom.

It was soon after that connection that I found my way to a breast cancer chat on Twitter that is actually bigger than a mere hashtag: #bcsm. Short for Breast Cancer Social Media, the #bcsm chat is an online network of breast cancer patients, caregivers, physicians and advocates. I tuned in to the #bcsm chat weekly and tapped into the knowledge of women who had navigated through a similar journey. It was through this chat where I first learned about metastatic breast cancer and survivorship issues.

Using the #bcsm hashtag, I’ve connected with other TNBC survivors and women like myself that faced a diagnosis at a younger age. Through Twitter, I have been able to connect with a handful of other women who battled breast cancer while pregnant and have also helped to support newly diagnosed women. I prefer this social media platform to keep updated with the latest research and news related to breast cancer.

Social media has served as a powerful tool in my journey with breast cancer. Not only has it served as a news source, but social media has connected me with some amazing people and provided access to medical experts and answers to many health-related questions. Social media has been my lifeline on days that I just need to vent about the disease and life in general. The connections and knowledge that I’ve gained from social media networks have empowered me to become a better, more educated advocate for my own health and for others.

Caregivers Suck It Up

It’s taken awhile for my hubby and I to get to this point: where we can talk freely about our breast cancer journey, where we can look back and reflect on what we’ve been through together the past two years. He often calls me the strongest woman he has ever known.

Up until recently, he didn’t think that he could (or should) share his fears or feelings about our battle – not with me, not with anyone. No matter how often I urged him to seek a caregiver support group, his response was that this journey wasn’t about him and he didn’t need one. He was always my rock and he never let me know he was afraid to lose me. He made it all look easy to be my caregiver. And I was not always the best patient.

I like that we can finally discuss our journey open and honestly and he doesn’t have to keep his fears and feelings bottled up. We can now joke about some things along this journey and cherish one of the most difficult times we’ve shared.

He recently told me a story about my beloved nurse practitioner, Helena. Everyone who knows Helena loves her. She’s not only an outstanding health professional that will give you the facts straight, she herself is a 12-year triple negative breast cancer survivor. She’s a tough little lady.

At my initial oncologist appointment, where we first met Helena, she pulled my hubby aside as I was meeting with the doctor. She said to him, “Look, I know her diagnosis is hard to deal with. But it’s harder for her…so Suck It Up!” And she proceeded to give him all the caregiver advice that he would need along this journey. That conversation set the tone for how he would handle our battle.

The next time I see Helena, I will have to hug her extra hard, as she always hugs me when she sees me. And tell her thank you for teaching the strongest man I know how to take care of me.