And we're back! As this episode is being released, it's October 1st, which means that breast cancer awareness month is upon us. Fittingly, I also have scans this morning, after what has been pretty much a year of hell. Let's backtrack: My last stable PET scan was in September 2018, right after my hysterectomy. In December, I experienced progression in my bone lesions, and in January, I started a clinical trial. After being diagnosed with brain lesions in March and undergoing stereotactic radiosurgery in April, my disease progressed into my liver and lung in April, removing me from the clinical trial. I then started Xeloda, and oral chemotherapy drug, that month. Two months into my treatment with Xeloda, my tumor markers, liver enzymes, and liver pain skyrocketed, sending me for scans nearly a month ahead of schedule. My largest liver lesion had doubled in size, and I had developed several new lesions as well. It was time to bring in the big guns. The following week, in July of 2019, I started my first course of IV chemotherapy: Taxol. 

To say that Taxol has been a bitch would be an understatement. It's been brutal. After about two weeks, I lost all of my hair - and when I say all of my hair, I mean ALL of it. It's slowly growing back now, but, as my husband said a few days ago, "you look like a baby goose who flew into an electrical wire." So, not exactly winning any style awards these days. And then there are the rest of the side effects: GI issues, near-constant nausea, body aches, and pain. A lot of pain. Enough pain to warrant three emergency room visits in the last month. So fingers crossed that I can have my first stable scan in over a year. 

But let's chat a little bit about breast cancer awareness. What exactly does breast cancer awareness mean? What are we working for when we are trying to foster "awareness" of the disease? I honestly would love to hear what other people think about this. Personally, I think that the term awareness has lost effect. We need to break down what our campaigns are doing and make sure that they are falling into what I think of as the three subcategories of awareness: education, advocacy, and community-building. If it's not doing one of those three things, than that awareness activity is feeding into the culture of pink-washing, which is when a brand slaps a pink ribbon on something without further explanation, and relies on that pink ribbon to boost sales, often without a direct connection to an organization or specific mission, other than "awareness." And that really just allows people, and companies, to buy into the commodification of breast cancer. Because I can't imagine how many companies' sales would be boosted if they slapped a sticker on their product and said "116 PEOPLE DIE EVERY DAY from metastatic breast cancer" - and yet, that's the reality of breast cancer. We don't need breast cancer awareness, we need metastatic breast cancer awareness: we need advocacy, education, and community building.

So for this month, October, I am going to be doing my best to do those three things. I will be talking with guests whose lives in the breast cancer world have shifted past awareness into a space that works toward those three tenets in order to further work toward true understanding of life with breast cancer. My guest today, Laura Carfang, is as much of my guest as I am hers - we conducted a joint interview of each other, and came out with a fantastic conversation about community that I hope resonates with many who are listening. 

 Laura Carfang, the host of Breast Cancer Conversations podcast, is SurvivingBreastCancer.org's Executive Director.  She is a firm believer that everyone's voice should be heard. She's an advocate, mentor, leader, and visionary with over 10+ years working in education, development and programming in the non-profit sector. Laura was diagnosed with breast cancer at age 34, and subsequently founded SurvivingBreastCancer.org to empower breast cancer survivors and their caregivers from day one and beyond. SurvivingBreastCancer.org provides resources and a platform for navigating a breast cancer diagnosis. 

Show notes: emilyrgarnett.com/podcast

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