In my most recent blog post, which was written in July of last year, I explained that I was “breaking up” with advocacy. With the pandemic and Tori Geib’s passing, I just didn’t have the stomach for it like I had in years past. Aside from being exhausting in and of itself, the constant (or at least seemingly constant) petty drama between advocates was a major drag. Plus, my son’s college graduation, wedding, and the news that they are expecting their first child. The things I valued most no longer were.
Since January 2022, when my granddaughter Piper was born, my entire world has revolved around this beautiful little peanut. I never knew my ice-cold soul could love a tiny human being so deeply who I did not give birth to. When she smiles, it’s so big it makes me want to cry. But the universe had other plans, and here we are. I wasn’t supposed to know her, and I’ll never know why. I have zero problems with that at all.
However, let me stray from my point…..
Then, on the eighth of August, I was brought back inside. Olivia Newton-John, a famous singer, passed away due to metastatic breast cancer. Her 1992 breast cancer diagnosis was public knowledge. She underwent the full gamut of treatment options, including mastectomy, chemotherapy, and reconstruction. The doctors declared her “cured” (insert eye-roll). When doctors checked her bones in 2013, they found cancer had spread there as well. Her shoulder, to be exact. Later, in 2017, the cancer spread to her spine. The term “Stage 4” wasn’t used until 2017; however, I want to be clear that Olivia Newton-John was diagnosed with metastatic breast cancer in 2013. That’s also the year I received my diagnosis. Yet, after her death, it was reported that she had fought breast cancer for 30 years. I figured the media would use combat terminology, but I wasn’t prepared for the mountain of false claims that followed. Dame For the past three decades, Olivia’s breast cancer has been in remission. She was asymptomatic (not receiving treatment for her condition) for 21 years. She was diagnosed with active cancer in 2013 when it spread to her shoulder, and again in 2017 when it metastasized to her spine.
When in reality it was metastatic breast cancer, the media said she died of “spine cancer” or that she had the disease. Choosing your words carefully is essential in this case because breast cancer that stays in the breast isn’t usually fatal. As soon as it spreads to a vital organ, such as the bones, it is already too late to treat. Today, we enter Phase Four. Sadly, Stage 5 does not exist. After reading all of this false information, my brain felt like it was going to explode. Eventually, I just burst into tears. I just couldn’t keep quiet. This is why I took to Twitter and made a thread of five tweets to clarify some things. I had no idea that it would be retweeted so many times (60! ), or that nearly 15,000 people would see that thread.
On August 10th, I was taken aback to receive an email from Yahoo.com’s Senior Editor and journalist Beth Greenfield. My string of tweets was seen by her. She was attempting to contact me. Responding to her email only took me three seconds. Interviews are nothing new for me. Despite my best efforts, not everything I write gets published. Towards the end of the day, we managed to have a conversation. She was able to relate to me because she had experienced a similar situation herself, a diagnosis of breast cancer. After talking with you, I felt much better. Until I read her article, I couldn’t be sure, but I had a good feeling that she wanted her readers to grasp the point I was making on Twitter.
The piece appeared online late on August 17th. Jo Taylor, a friend and fellow advocate, tweeted about it the next morning, and I didn’t see it until then. I want to express my deep appreciation to Beth Greenfield for contributing to this outstanding article. In particular, I am pleased that she mentioned the groups I suggested the general public look into if they are interested in supporting metastatic breast cancer research. These groups are the BCRF, Metavivor, and the Cancer Couch Foundation.
Having said that, I still intend to be an outspoken advocate. While I did become frustrated by the widespread misunderstanding of metastatic breast cancer, I simply do not have the time or energy to resume my role as a full-time advocate and tour constantly. I look forward to spending time with my loved ones, including my husband and Piper (to the extent that my children will allow).
The article that was recently featured on Yahoo Life can be accessed here if you missed it.
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