As I just told Luis at Greater Goods Coffee Roasters here in Bee Cave, where I am sitting now, I do not choose when to write. The time chooses me. Whether it is events, or experiences, or reading, or music, there is a moment. A moment when all of the pieces come together. It is almost like a tidal wave in my soul. I feel the rush of energy. I feel the rush of emotion. It is almost like when I am near my bike before a long ride. I get “itchy.” A sort of twitch. I want to clip in to my pedals. And go. With writing, that “go” moment, that twitch is in my fingers. My fingers are suddenly connected to my heart. It is at that moment that I realize that I am ready. Ready not so much to write, but as to pour out my emotion onto a page, using words as my canvas to express a set of feelings that may have taken days, weeks, months, or even years to fully come together.
Suzy died August 4, 1980. At a hospital in Peoria. She was 36. I was still in high school. In Worthington, Ohio. The idea of being in Chicago had not yet dawned on me. I was just a freshman. In the fall of 1983, I moved to Chicago; started at Northwestern. The idea of being at Apple in July of 1987 had not yet dawned on me. However, in August of 1988, I moved to a new Apple office. In the Loop. In Chicago. There she was. Maureen. A beauty like no other. It dawned on me at that very moment that we were meant to be together, forever. What I didn’t know was how to ask her out on our first date!! We were married on July 14, 1990. Maureen died on October 21, 2014. At a hospital in Austin. Of metastatic breast cancer. She was 50. As I said in a talk at Susan G. Komen’s Big Data 4 Breast Cancer (BD4BC) event in Menlo Park, “36 was too soon for Suzy. 50 was too soon for Maureen.” On my flight into San Francisco for this BD4BC event, I flew over Apple’s new spaceship headquarters. Full circle. It’s all connected. 30 years earlier, I had started at Apple. In a much different time.
I have tears in my eyes because I paused from my writing to read Chapter 8, Make It Last, in Nancy Brinker’s book, Promise Me. I received the book at Susan G. Komen’s Partner Summit in Dallas just a few weeks ago. Just like I’ve been able to open my heart to their work, this book has opened my heart to what we can all do together. I have tears because the same breast cancer that had invaded her big sister, Suzy, had invaded my Maureen. Nancy wrote, “Her lungs were filling with fluid again, so when she did speak, it was barely above a whisper.” Like my Maureen, Suzy faced pleural effusions, liquid in the lining of her lungs. She had to have them drained. I remember vividly doing the same for the love of my life, from a catheter, that had been inserted in Maureen’s right lung, for that very purpose. Every few days, I would open a new “kit,” and delicately take out the gloves, the container, the alcohol rubs, because I wasn’t so much conducting a procedure. I was sharing with Maureen every ounce of my love for her, just like that day in August of 1988 when I first saw her at the Apple office.
Three days ago, I visited the Facebook group, Beyond the Pink Moon. I hadn’t been in a while. There are 7,426 “lovelies” there now. Beautiful human beings. Lovingly curated by Nicki Boscia Durlester. Founded on August 3, 2010. One day before the 30th anniversary of Suzy’s passing. 7,426 beautiful women, and men, that have been impacted by the same breast cancer as Suzy, Maureen, and Nancy. The news of Nancy Capello’s passing on November 15, 2018 shook me for some reason. I do not know Nancy but for her obituary and reading of her important work around the issue of dense breast advocacy. As I sat at Greater Goods yesterday, reading Promise Me, I was shaken again. The very issue that this Nancy has tirelessly advocated, was the same type of dense breast that faced Nancy Brinker and her sister Suzy. For those not aware of the issue, it is basically this, when the tissue in a breast is dense, it is harder for a mammogram to detect cancer. Not detecting cancer means that it can grow, spread, move around, for longer, without us knowing. It is why advancing imaging technology is so very important, so we can “see” cancer sooner. As Suzy’s sister, Nancy, does so well bringing to life in her book, for most of their years, the biopsies of cysts in their dense breasts were benign, until the one that was cancer. In Suzy. We, too, had one of those biopsies, Maureen was pregnant with our youngest daughter, Katelyn, now 14. As the obstetrician said, that lump doesn’t feel right. It wasn’t.
I knew today was the day to write. Because for those that have followed my writing for a while know, Maureen comes to me in music. Lyrics. On my way to Greater Goods, at about the same spot on my way out of our neighborhood as just over 4 years ago, when Chicago’s “Once In a Lifetime,” started playing, Billy Joel’s “She’s Got a Way” started playing on the Sirius XM channel to which I was listening. These lyrics jumped out at me:
She comes to me when I’m feelin’ down
Inspires me without a sound
She touches me and I get turned around
She’s got a way of showin’
How I make her feel
And I find the strength to keep on goin’
She’s got a light around her
And everywhere she goes
A million dreams of love surround her
Perhaps that is why Beyond the Pink Moon is such a special place. A million dreams of love surround everyone there. As I wrote on my first wedding anniversary without Maureen on this side of heaven, on July 14, 2015, in I Have Been Provoked | Oh, The Places You’ll Go, about the “lovelies” of Beyond the Pink Moon:
As I leave my waiting room, it is each of you that I think about. Each of you is an unbelievable gift, a true blessing in this world, and just like Maureen, cancer has not, can not and will not change that about you. We are never promised tomorrow. None of us. But, we do have today, and there are places we can all go today.
And, today, is exactly what matters. And not just today, but right now, this very moment. We can be kind. Just like the lovelies are kind. As we each share another post about a diagnosis, a “cancer-versary,” another scan, or like November 15, a post about the passing of another light, Nancy’s light. Or the post from Pam, just over an hour ago, about the passing of another “lovely,” Joan. From metastatic. The same metastatic that took Maureen. Suzy. And 114 women, and men, each and every day.
Being kind. Tzedakah. Ever since I saw that word on page 18 of Promise Me, it has hung with me. Talking about her mom, Nancy Brinker, wrote this, “She embodied the idea of tzedakah, which isn’t about performing acts of kindness; it’s about the state of being kind.” Wow. Just wow. That is what is beautiful about Beyond the Pink Moon, #bcsm, and so many other support groups. They are kind. And that is perhaps the lesson I have learned the last few days. We must be kind. Not just to folks that are wrestling with the cancer that is in their bodies. But to everyone. Every fight with cancer is different, not just at the individual level, but throughout the world of onco-philanthropy, too.
No one approach is right; but every approach, together, can change the fight with cancer. Nancy Capello’s advocacy through Are You Dense, Nancy Brinker’s love that launched a global movement to end breast cancer through Susan G. Komen (not just in her sister’s name but because of her promise to her sister), Nicki’s Beyond the Pink Moon, Deanna, Alicia, and Jody’s #bcsm, and so many other philanthropies (both large and small) from Metavivor to BCRF, the Breast Cancer Research Foundation, founded by Evelyn Lauder, who passed of metastatic breast cancer in 2011, to MetUp, to Kendra Scott’s Holley Day each October in memory of her friend, my own work on CLOUD – Consortium for Local Ownership and Use of Data, and so many others I know I have not listed, are all about tzedakah. We are all in this together. Our fight is with cancer. In the words of an African proverb, “If you want to go fast, go alone. If you want to go far, go together.” And, as we go, as we leave our waiting places, let us not only go together, but let us be kind.