Lulu and Jill

A break from #EpicCaldwellVacay for a moment (which HAS been epic so far, more on that later) to remind ourselves that cancer never takes a vacation. 

While in New York, I learned that my dear friend from Twitter, @LuluChange, had died from metastatic breast cancer. I first met Lulu on Twitter, but we also met in person twice: once at the Living Beyond Breast Cancer conference in April 2015, and once in Seattle in summer 2015. There are a lot of tough broads in the world of MBC, but Lulu was one of the toughest, maybe because she was so determined not to let cancer define her life. She was a professor at a college in Colorado, and she taught right up through spring semester this year because her career was important to her, as were her adult children. When I think of Lulu, I’ll always remember her as deeply committed to changing the world of MBC, and refusing to let people paint a rosy picture of breast cancer. Twitter seems an emptier world without her.

And just today, I learned that my dear friend Jill Cohen, a fellow Hear My Voice graduate and Seattleite, has entered hospice. Jill’s blog, Dancing with Cancer, was the first blog I found when I was diagnosed with MBC, and it gave me so much hope. She lived with MBC for 14 years–in fact, last summer she threw a bat mitzvah for her mets, because come on, that’s funny–and she had the most amazing attitude about her disease. She told me that not long after she was diagnosed, she had a dream that there was a party at her house and the guests were being too loud and keeping her awake. So she told them they could stay, but only if they’d keep it down. And that’s how she viewed her cancer: it could stay, but only if it kept quiet. Unfortunately, her cancer isn’t quiet anymore, so it looks like the party that has been Jill’s life is coming to an end. I’m going to miss her at our local support group meetings, and I’ll always remember her and her husband sitting on our deck enjoying some Seattle sunshine during our last visit together.

All the rest of you metsters: please, no more bad news while I’m away. Just hang on a couple more weeks, OK? And know that I wish I could hug all of you as our community suffers these loses. 

An Anniversary

I’m flying home from the Living Beyond Breast Cancer Thriving Together Conference as I write this, and I’m terrified to check in on social media. This time last year, I was crying because a truly beautiful person with metastatic breast cancer, Seporah Raizer, had just died of our disease, and I realized that she was one of the 113 Americans we had been honoring with our very first die-in. I certainly wasn’t the only one who sat in an airport bar that day crying my eyes out that such an incredible voice had been silenced forever, that someone who should have had so much life to live, had no more life in her body. 
It was hard enough leaving Philly and the new friends I had made that weekend–friends doesn’t feel like an adequate word to describe the relationships we’d developed, but I haven’t found the right word to express that feeling–and I sat in an airport bathroom and bawled my eyes out because I was terrified I might never see some of them again, that they might not live long enough to be with us in Philly the next year. We had all hugged each other tightly and said “I’ll see you next year” but it didn’t take away my terror wondering who would be gone when the following spring came.

Now, a year later, we know who we have lost. Maria, who I can’t think about without my heart breaking all over again. Ishuan, whose beautiful children will have to live without their mother. Holley, who inspired us to share our truth about our disease and gave us a voice.

We honored them this year, and the more than 40,000 other Americans, and the 522,000 people worldwide, who lives were stolen by this awful disease. We walked in a candlelight procession through the streets of Philadelphia to Independence Hall, and we stood near the Liberty Bell in the cold damp air, and rang our own chimes 113 times. It felt like an eternity, and with each peal, I wished that they would stop–that somehow that number would be smaller. Just one less ring, I thought. Imagine what that would mean to a family grieving the loss of that loved one. Just one less ring.

We spoke our truth, and raised our candles, and we held each other close, knowing exactly how we all felt at that moment. The profoundness of our loss, and the fear in these people we have grown to love so deeply, was written in tears on our faces and echoed in our voices.

And then, we packed our things and in ones and twos and small groups, we hugged again and again so tightly, just as we did last year, saying “I’ll see you next year” and hoped that we meant it. And we boarded our planes and climbed in our cars and cried, in grief and in fear, and tried to allow hope to keep us going, as we drifted away from the city of brotherly love.