Sunday, November 29, 2015

MARIA'S FEAR - IT DOES HAPPEN




And I want to add, #SometimesYoureRight. It was a prophetic tweet.

Maria and I were together in June. It was exactly five months ago. We were fortunate to be invited to participate in the same meeting. It was some sort of serendipity that the first person I saw upon entering the hotel was Maria. By that point in time, the only thing we didn't already know was how very short I am and how much taller Maria was. Those may have been the first in real life words spoken, "I thought you were taller!" And, I laughed.

It was a roundtable discussion and she was brilliant. She was fine. Except for a pesky irritation. "Allergies. I have this allergy thing going on."

She certainly looked fine to me. See for yourself. This was in June. Five months ago. 



One month later, she was with Terry Arnold. Maria and Terry both share the rare breast cancer space, each with their own version of rare. The allergy thing was far worse. In fact, it was so bad that Terry insisted she leave to get checked. I think Terry threw her out of the class. Terry feared it was something bad and sadly, she was right.

Maria's early stage cancer had metastasized to her lungs. On Friday night, I received a message that she had died. She left instructions for a friend and included in those instructions was a note to contact me "when the time came." Five months from the dreaded fear, through the allergies to the diagnosis and ultimately to one more untimely death.

I learned of the lung metastasis one month after our meeting in DC. The email subject was "I have news" and the news was one more sucker punch to the gut. Three weeks earlier our email messages were about researchers. She identified every researcher who was doing anything to study metaplastic breast cancer. One of the researchers was someone with whom I'd worked in the past, someone whose lab I visited. I was going to introduce them. I did make that introduction but instead of collaborating, it was with urgency and for treatment opinions. That was what our emails were all about before I got news. That, and that allergy, which, Maria told me, was getting on her last nerve.

Maria was tireless in advocating for metaplastic breast cancer. She was so much more than that. She was a veteran, she was an exceptionally accomplished journalist and upon learning she was diagnosed with a rare form of breast cancer, she partnered with two others and the Metaplastic Breast Cancer Foundation was formed. She was just profiled on the CDMRP website. She was a consumer reviewer.

Her friend, Jodi, posted this on Facebook. From Maria:

"If you are reading this… I am gone. Yeah, that kind of gone.

I lived a blessed life from the day I was born into a loving family, to the day I met the love of my life Christopher. Even when things went wrong, it always seemed like – in the end- things always turned out well for me. So there is no reason to feel bad for me…. I had it great. I wish it had lasted longer but what I had was great.

I pray for each and every one of my friends that their lives are as blessed going forward as much as I was blessed throughout my life.

You’d never believe how hard it is to write these words or to attempt to say the right thing at the end. So, that’s it. You’ve all been great friends and I am sorry I will not be here to grow old with you. Take care of each other."

It's worth reading her last blog post as we try to figure out how to take care of each other. My Own Personal Crying Game was written in September. She was upset at a conversation that took place on the Today Show between Joan Lunden and Hoda Kotb. I'd suggest you read it. The message that caused Maria's tears is the messaging that marginalizes every single person who develops metastatic disease and it marginalized Maria.

Early detection is key and yet, Maria was the poster child for early detection. Hell, she was on tamoxifen before she ever developed cancer. Maria writes that she should have been "golden" in the land of early detection.

And then, they wanted to get out another message, "Expect to win, stay engaged in life."

Well, Joan and Hoda, I won't share my private email messages with Maria but she expected to win. She called that denial. As for staying engaged in life? The treatment wasn't pleasant. The cancer itself was painful. She tried to stay engaged. When she was able to breathe or wasn't dealing with terrible pain.

And, Joan and and Hoda, despite her early diagnosis, despite her attitude and everything she did to help so many others, she still died. But first, she cried. And I think those with celebrity status should know that there are those who cry because no one wants to tell stories like Maria's. Which leaves it up to those of us whose lives are so profoundly touched by people like Maria. And so deeply hurt upon their death. The pain is palpable and the void will never be filled.





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3 comments:

  1. I am sorry for the loss of your friend, AnneMarie. Her letter was inspiring - she must have been an amazing woman to have had such a positive attitude. Maria's story is very scary. I'm sitting here with my annual (allergy) cough, which the docs can never seem to stop. Thankfully it always stops just as suddenly as it starts, but it tends to go on for a month or more. You can bet I will never again assume it's nothing.

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  2. I am so sorry to learn of Maria's death. Thank you for letting us know. She was such a wonderful woman, and devoted to doing all she could to help bring awareness and all the latest scientific data she presented along with her collaborators on the website she created for metaplastic breast cancer. And thank you also for telling her story about her post, "My Own Personal Crying Game". I know she would be so grateful that your rebuttal was so concise and fit exactly into how it affected her.

    I offer her husband, Christopher, her Family, her dear Friends and Colleagues and all those in the Metaplastic Breast Cancer.Community my deepest sympathy, and my sincere thank you to her for her service to our country.

    Again, Thank you Annemarie , and I am very sorry for your loss of Maria, a true friend and incredible woman.

    Much Love,

    Karen

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  3. Thank you so much for sharing- heartbreaking.

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