I Have Been Provoked | 7.31, 10.21, and MBC

14 Years. Except for the year of the Deepwater Horizon oil spill in the Gulf in 2010 and Hurricane Ivan in 2004, we’ve been to Ft. Morgan, Alabama each and every year. We started going to this beach in 2003, the year of my bride, Maureen’s, mom and dad’s 40th wedding anniversary. We had so much fun that year we’ve made it an annual tradition.  I will return to the story of the beach in a moment. For now, I have to reflect and let the tears stream down my face.

For those that don’t know the acronym, MBC, it means metastatic breast cancer. The definition of metastasis is this, “the development of secondary malignant growths at a distance from a primary site of cancer.” That rather sterile, yet still scary definition, does not fully capture its full essence. 90% of deaths from breast cancer are due to MBC. And, as I write, women are dying because of it. One truly special human being, Lori Marx-Rubiner, is in hospice now. That is why I have tears. I don’t know Lori. I have not met Lori, but I feel like I know her. I “know her” because of her blog, ReGrounding. I “know her” because of #bcsm – breast cancer social media. I “know her” because of the special post made by her friend, AnneMarie Ciccarella, last week. Although AnneMarie posted “A FAREWELL, and a Love Story,” on Tuesday, July 25, it was written on Sunday morning as she headed off to see her friend, Lori. As the kids and I arrived at the beach in Ft. Morgan, Alabama that same Sunday morning, AnneMarie was with her “soul sister” in New York.

I cry for the same reason I cry every time I see a tweet with the hashtag, #bcsm, read a post in Beyond the Pink Moon, or hear any story of another human being facing a diagnosis of cancer. This shit is scary and hard. Breast cancer hits particularly close to home because it is a story I know too well. For over 14 years, I have “fought” breast cancer in the “2nd person.” The primary site of our “family’s cancer” was my dear, sweet, beloved Maureen. My soulmate, my best friend, my bride of almost 25 years, the mother of our 3 children, Taylor (18), Kyla (15), and Katelyn (13). Her primary site was her right breast and a bunch of lymph nodes. In the fall of 2003, while pregnant with our youngest, Katelyn, an astute obstetrician found a lump, and we had a biopsy.  Lori was diagnosed in 2002. Her cancer “came back” in 2011. Maureen’s “came back” in the fall of 2008. As I told AnneMarie in a message earlier today, I understand Maureen’s courage through the courage I see in not just those with cancer but especially those with MBC.

Seriously, think about the idea of MBC for a moment. To be provoked you have to really sink into your emotions. Let them overwhelm you. Let them consume you. The tears that are flowing down my face thinking about Lori come from the deepest part of my soul. The tears that are flowing throughout the MBC community and especially those that know Lori come from that same deep place. I “know” Lori because I know Maureen, and I know what it meant to watch MBC “take over.” We went everywhere. Asked every question. Got every scan. However, I knew when I saw the scan from a camera inserted into her lungs at MD Anderson Cancer Center in August of 2014, not long after we had returned from our 11th trip to the beach at Ft. Morgan that year. Maureen’s metastasis had reached the lining of her lungs. Lori’s metastasis went to her bones. Regardless of “where” the MBC chose to go, it “escaped” for both of them. 

Photo credit: 3cubedstudios.com

In Lori’s own words, “Let’s tackle what kills us…” Those words provoke me this day because Lori is exactly right. If 90% of women with breast cancer die from MBC, then that seems like the obvious target for our work, our research, our passion. My work and my passion flow this fight, and Maureen was in the audience at my talk at TEDxAustin in 2011, the year Lori’s cancer came back. I cry now because as I think about Lori’s husband and son, her parents and her sister, sitting by her side in hospice, my emotions from the morning of 10.21.2014 overwhelm me. They consume me. That is the morning I awoke at Seton Hospital to my beloved Maureen, who was no longer breathing. I cry not just because I “lost” her that day. I cry because I love her.

I cry because on Wednesday night at the beach in Ft. Morgan, Alabama, Maureen “stopped by” to say hi. Our trips to the beach are full of love and full of tradition. We’ve had the exact same menu for all 14 years. Family favorites. “Thanksgiving dinner” on Sunday night, when we arrive, lovingly brought by Maureen’s sister, Dominique, her husband, Paul and their family. The kids and I continue to make “honey chicken” on Tuesday night, a recipe handed down from Maureen’s grandmother, her mom’s mom. And, on Wednesday night, we go to Tacky Jacks at the end of the spit that is Ft. Morgan. Our grand group of over 20 family, along with friends, the Deakins, gather and go out for dinner, the one night in the week we don’t cook at the beach house.

And, on Wednesday night, as I was looking at my photos from 2014, the last summer Maureen was with us physically, I came across a photo that moved me to my soul and literally made me shake. For those with an iPhone, you know that if you push the buttons the “wrong” way, you can unexpectedly take a screen shot of whatever you are looking at and make it a photo. I had one of those. For several months, I had a picture on my iPhone screen of the kids and Maureen in New Orleans from January of 2014. We had gone to run a half marathon in honor of a little boy, Kethan, along with his mom, Sumi, and other friends (Kethan passed from the side effects of his treatments for leukemia in the summer of 2013). The picture was taken at the same post in Jackson Square where I had taken a solo picture of Maureen 25 years earlier in 1989, on our first date weekend outside of Chicago where we had met.

If you look closely at this picture, you will see why I shook. The photo was captured 3 years ago today, 7.31. If you look more closely, you will see the time it was taken, 10:21. 3 months before I awoke on 10.21.2014 next to my beautiful bride and faced the horrible task of telling her mom and dad, her sisters, our kids the terrible news of Maureen’s passing, here was a photo that until the night of Tacky Jacks this past week I didn’t even know existed. I share this because I believe it symbolizes the incredible power of love. Almost 3 years after Maureen’s passing, her love endures, and she still finds ways to stop by and say hi.

I am provoked because being provoked flows from love. I could be angry with cancer like I am right now as I think about Lori and too many other beautiful women like her. But, as my #IHaveBeenProvoked series makes clear, hate flows from anger, and nothing good comes from hate. It is my love for Maureen that drives all that I do; it is the love of so many for Lori; the love of so many for Jody; the love of so many for names that we do not know that must provoke us. Let’s replace the metastasis of cancer with the metastasis of love and put the scourge of this disease behind us once and for all.