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The Legacy of Champagne Joy

21 Apr, 2017

Saying Goodbye, One Month Later

In this space we occupy after a breast cancer diagnosis, life and death often feel magnified. We celebrate every milestone from another birthday to another year closer to five and then 10, along the way remembering to breathe.

However, with each toast to another year, we also find ourselves raising a glass to dear friends too soon departed because of the disease we are somehow surviving. It’s a macabre yin and yang, and I grapple with it daily. I try to understand why me? And why them?

In February I celebrated two birthdays. One marked the date I began life, while the other marked the seven years since I entered my new one; the one I’ve been living in since I was diagnosed with breast cancer.

I celebrated each of those moments with a dear friend, who no less than a year ago thought she would not be around see them with me, metastatic breast cancer being the evil, heartless bitch she is. But she was. And she was there to hold my hand as I walked a sliver of stage marking one of the biggest highs of my entire career. We had hope, she and I. Hope for another month, another year, another show.

Yet, little more than two months later, I am still here but she is not.

In late March, I was in Westchester County, New York with some of the most amazing women I’ve met in this Joy Bad Luck Cancer Club. We were working on a documentary about the true costs of living with and getting treatment for a deadly illness; a financial toxicity not spoken about enough on a larger scale. We were laughing, we were crying, we were telling stories, we were getting angry and we were coming together to take up arms and fight for what we felt was unfair in this world. It was the usual rabble-rousing that occurred whenever we were all in the same room together. Central to all of it was Champagne Joy.

Central is a place Champagne occupied best. It was always where she landed. She was the party. She was the movement. She was the keystone; the rock that held everything (and everyone) together. She was the President of Mars, after all, and we were lucky enough to be held in her orbit.

On a Monday, on the 27th day of the third month of the year 2017, on the day we had just wrapped filming, Champagne suddenly died.

I found myself over the next few weeks in a cloud of unbearable grief. Here was another mentor and friend dead from breast cancer, dead from a stage of the disease we are not putting enough education and research dollars behind.

As it turned out, as I was counting my nexts, she was worrying about her lasts. Would this be the last Christmas? Last New Year’s? Last party? Last documentary? Last words from the pulpit she fiercely stepped into and one that elevated the final years, days and hours of her life to nothing short of legendary?

I was wracked with guilt and fear and anger. So much anger.

Champagne was quite well known for her saying “I am Champagne Joy. The least interesting thing about me is that I have cancer.” Yes, it made for an excellent soundbite, but it was also glaringly true. I mean, the woman never had the same hair color or style in the entire time I’d known her. That, and her unending palettes of eyebrow color, were enough to start a conversation that didn’t need to include “stage IV terminal cancer.”

But, just as cancer was the least interesting thing about her, so was her enviable eclectic style: a hallmark of primary colors and skulls.

Champagne joyously photobombs Angeles Almuna and Shin-Ae as they try on their NYFW looks

Champagne was a force of nature. She held a library’s worth of stories that wove together a stunningly remarkable life. She was fierce, driven, determined, unabashed, confident and assured. She was unwavering and unflinching. She told it like it was, and she made sure whatever she was working on ran exactly as it should. This was a woman who stood so tall and with such strength, we almost believed she could single-handedly drive away the cancer that ravaged her body. How? We weren’t sure. But we still thought it was possible.

Champagne was also a light. She was as tender as she was tough. Her uniqueness and beauty came from this immense depth within her. In one moment she could single-handedly herd an army of otherwise distracted people, and in the next turn around and touch their souls in a way that would never leave them.

I know, because she did it to me.

I first met Champagne at an event a couple of years ago. Prior to that, we had one of those relationships by proxy of Facebook and the breast cancer community. When we did finally come face-to-face it was an exchange of “I have been wanting to meet yous” and then an instant edification that this was one of those earth-shattering, life-affirming, nothing-will-ever-be-the-same moments.

She made me want to be a better person. She pushed me to want to do more, to be more and to achieve more. She was a woman I knew and loved who lived with a disease that wrecked her bones, invaded her liver and permeated her lungs, and yet she never, ever gave up. On her worst days she could achieve more in one hour than most do in a lifetime.

And, you should have seen her on her best.

When she was first diagnosed with breast cancer, she blindly got on that same conveyor belt just as every one of us did when we were first diagnosed. Being underinsured and subsequently thrust into examination rooms and chemo bays that felt more don’t ask, don’t tell, not only irritated her, they propelled her forward. She simply did not want to trade in “Champagne Joy” for “cancer patient.” She didn’t want to be in a healthcare environment that failed to see that as an important distinction. It went against every doctrine she believed in.

So she started talking to others, and she started educating herself. She sought out those who also rejected being defined by the disease, and stirred up a movement. She decided she would find a way to define cancer the way she wanted to, without losing her identity. Before long, there were others who followed. Out of all of it this #Cancerland group grew. It was in that growth where Champagne discovered how this disease would fit into her personal script of life.

Champagne and childhood best friend Mira Sorvino get ready to meet with House and Senate members to change Metastatic breast cancer legislation

Most people are familiar with this Champagne Joy. They know her through her life’s mission to change the conversation not only about breast cancer, but metastatic disease. While she can’t recall just how #Cancerland started, (likely from Champagne being Champagne and taking a woman she met on the subway who hated her oncologist under her wing and finding her better treatment elsewhere through the underground network), she could say for sure that she wanted to raise money to help women. She was so outraged by the societally-crafted idea of breast cancer that was advertised as a “happy butterfly and an end to end joyous experience.” In order to raise money and throw parties that would do exactly that, while running the whole shebang on the donations of goods and services (and locations and entertainment), she needed a 501(c)3; a nonprofit organization. So, she went out and got one, called it #Cancerland, and it became the touchstone of advocacy.

Few know the Champagne Joy who was so sick she could barely eat, let alone walk a few blocks, but still got in her car and drove to a Manhattan diner to meet me. It would take her a day to rest and recover from this excursion, but she simply would not take no for answer. I could have ducked out, fatigued from a long day of work and travel, but if she made it there, I could make it there.

We talked for a long time, sharing hamburgers and grilled cheese, and planned on how we were going to change the conversation about breast cancer.

Last summer I got a voicemail. “Dana, I just secured a spot at New York Fashion Week.” It was Champagne, in all ways methodical and rational with a hint of arm twisting. She continued, very nonchalant. “It’s in two weeks. We need you to do this.”

Of course, at that moment I went from “Holy sh*t, yes!" to "There is no way I am prepared to do this in 14 days, Can I get a raincheck?” Champagne, being, of course, Champagne, said okay, no problem, we’ll see what happens next year.

You see, Champagne had a vision. She had a plan. If you were in, wonderful. If you were out, she kept right on going. However, she was also generous with her time. She understood that lives go as they will, and that, when you were ready, she would be there for you, handing you the keys to your dream, the post of a protest sign or a piece of legislative literature and someone’s phone number. Or she would simply hand you a drink, and expect a good time and smart, thoughtful conversation.  There was not a single person Champagne would turn away. But, she would expect you to keep up with her.

Champagne gets interviewed by Refinery29 - a big supporter of her mission

She always thought of ways to make others successful. Fortunately for me, AnaOno was one of those things.

There was another show open at the 2017 New York Fashion Week. Can we do it this time? The lead time was a little longer, and there would be a lot of long days and nights, but there was no way I would pass again. A year ago Champagne wasn’t sure she’d make it to another February show, and I was going to make sure if this was going to be her last, it would be one heck of an event.

I told her my concept and idea of what I’d hoped for the show concept. The plan wasn’t solely about walking “topless women down the runway” which is the story the global media told. Instead it was about showing the scars left from breast cancer. It was about showing the outside world, possibly uneducated about what breast reconstruction even was, that not everyone is so “perfect;" this was what we had, and it was a marker of what we had been through.

We wanted to expose what a body ravaged by breast cancer really looks like, and how that knows no boundaries, nor is it the same for each person. Cancer does not discriminate. It does not care who you are, how much money you have, what your plans are, how old you are, what your ethnicity or gender is. It’s not even all that concerned with whether or not you’ve eaten healthy or exercised or spent your entire life in a oxygenated biosphere. It just happens.

Champagne and I discussed who would have the guts we needed - and that little bit of crazy we needed - to walk in lingerie and glitter, to expose scars the world may not yet have seen and yes, even walk topless to show off the different surgeries and decisions these individuals made.

Each individual on that runway was meant to represent a segment of individuals affected by cancer. Young or old. Flat or reconstructed. We wanted to show it affected any ethnicity, any gender identity, any sexual preference. We wanted to show you can be who YOU are, what YOU want to be, and what YOU feel drawn and connected to.

Champagne and I also wanted the show to be bigger than just lingerie and fashion. We wanted it to bring attention to metastatic disease and raise money for #Cancerland

This show was an example of what Champagne Joy did. She never chose the quiet road. She wanted us all to get loud, to “live with our voices heard.” She fought to bring change and education to the darkest parts of this disease. She brought individuals into her fold, either to help them navigate breast cancer, or to be a friend and advocate, or to just be a champion of making their dreams come true.

The walk following our fashion week show

She was one of the strongest, most influential presences in my life. She never let me give up. She calmed me down when the stress of life was going through the roof. She supported me with wisdom and guidance on those days and in those moments when I didn't think I was good enough for the show or that I was too broke to pull it off, or that I didn't have enough help to get everything done in time.

Whether I worried about the negative reviews, or just plain worried, Champagne was always there to respond and advise with wisdom. Oh, such wisdom and eloquence. She was as erudite as she was grounded in real life. She had the streets and the smarts inside of her. I remember telling her the last time we were together that “I wished I had you mic’d at all times.”

She would share with anyone who would listen, and even those who didn’t want to, her experiences, her mission and her beliefs in such a wise, beautiful way that flowed out of her like poetry and proverbs.

Because my of chemobrain, the mush that is now upstairs in my head, I couldn't hold it all. What she needed to say to the world needs to continue to get out there.

We must do it for her.

To know I have lost another strong, go-to girl, who has held me up and pushed me forward, absolutely breaks my heart.

I want to scream from the roof tops: THIS IS NOT OK! NONE OF THIS IS OK! This is incredibly fucked up. Why do we continue to support a “pink ribbon” and talk about saving a woman’s breasts?

Champagne used to rail against this idea of the “Pink Doritos,” and how there is enough awareness out there. We are all very much aware. Now is the time to fight for research to stop this disease from claiming the lives of so many beloved men and women. Let’s continue Champagne’s legacy. LET’S GET LOUDER. LET’S TURN UP THE VOLUME. LET’S SAVE HUMANS!

We need research, we need a cure, and we need treatments that allow us to live. If we all band together, advocate together, and turn our support to foundations that are making a difference in the lives of people diagnosed with breast cancer, we can start to shift the scales. Together we can fill that center Champagne created, and bring even more people into our collective orbit; an orbit we create in her memory and spirit.

Champagne Joy was an advocate, a friend, an aunt, a daughter, a sister and a wife. She fought every single day for her life. She had more bad days than anyone should experience, but she never let it stop her, and she sure did not “lose her battle”. She will be forever remembered, forever loved and never forgotten.

I will continue to count my nexts, and rise up to prevent those from worrying about their lasts, and through all of it I will always remember Champagne’s message to “glitter as you go.”

Written with Amy Lee Mayer.
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7 comments

Joe Poggiogalle

April 22, 2017

I will never forget my friend Champagne . For the past ten years we celebrated birthdays and holiday gatherings and back in the day would hang together on weekends at local neighborhood spots. It sounds crazy but I never thought she would die. I have never met anyone whose presence was so powerful and so full of life and love She was a true one of a kind and I pray for her peace and happiness that she so deserves .

Gregory Alan Cramer

April 22, 2017

This is so beautiful, as Champagne was. I whole heartedly agree.
Thank you for saying what all of us that knew her want to say and not let her life be forgotten. She was a true beacon of hope for so many people. Thank you. ?

Joanne schreiber

April 22, 2017

What an autobiography if you will of Champaign. Touched my heart and brought back memories. One thing is certain, Cancerland will live on forever and Champaign was a very big part of that, she to will live forever

Su Hilty

April 22, 2017

Oh so true! Thank you for those eloquent words- but action is what is needed. I am here & so are many of my friends. ???

Melly Testa

April 23, 2017

Blessings upon us all that Champagne Joy was as embodied and passionate as she was. I never met her personally. I wanted to, but was shy when I got the chance. I am happy you grabbed her golden ring and have contributed to our community to the degree that you have. Word up. Great essay.

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