A True Advocate

Everybody had something to say about Angelina Jolie during May. You couldn’t open a newspaper or magazine, or read a blog without hearing an opinion about her risk for breast cancer and her individual decision.  This dialogue was probably the biggest breast cancer conversation we have had as a nation so far.  Everybody had an opinion.

Me?  I couldn’t muster much interest.  I kept thinking about Maria Wetzel.  Her story wasn’t making the NY Times or CNN.  While Angelina was announcing to the world her tough decision, Maria was making the decision to enter Hospice care.

You didn’t hear about it in the news, but Maria’s story is also about courage, about advocacy and compassion, about empowering others, and about working to make the world a better place. Maria is the real deal, an advocate for those who would come after her. She is one-of-a-kind in intellect, spirit and heart.  But she is not a celebrity. And sadly, her breast cancer story is not unique, but typical. Run of the mill.  It is relevant to more of us, but unfortunately, will go mostly unheard.

Before 1996, Maria never spent any time thinking about cancer.  She lived in northern California, enjoying the outdoors, and life with her husband and 14 year old son.  She worked as a Clinical Laboratory Scientist, looking for pathogens in other people’s blood samples.  But after the day in 1996 when she was diagnosed with Stage II breast cancer, she never spent a day without some thoughts about cancer.  She read, and connected online, everyday, learning as much as she could; First for herself, for treatment decisions, or to lessen side effects, but gradually learning for others.  She began sharing information and research findings, doing peer support work in her community for those newly diagnosed, and translating research findings into lay language for those less familiar with science jargon.

Though she had a good science background, she wanted further training and took NBCC’s Project LEAD, Clinical Trials LEAD, as well as the Quality Care LEAD. She began attending research symposia.  Over time, she became frustrated with the “breakthroughs” that never ended up doing much for patients. She began participating in peer review of breast cancer research proposals, looking to award funding to the research that would provide more than incremental benefit, and was invited to serve as an ad hoc reviewer for the Integration Panel of the DoD Breast Cancer Research Program.  She developed into a passionate advocate for ending breast cancer, and she knew this was going to require major change in the breast cancer world.

Maria always felt she wasn’t finished with the disease after that first diagnosis in 1996, but after nine years she let herself think maybe, just maybe she’d be one of the lucky ones. But in 2005 she was diagnosed with a chest wall recurrence, and in 2011, with metastasis to her lungs and liver.

Though she was living with metastatic disease, she continued her advocacy, working to help others and to see an end to breast cancer for future generations.  She called herself the reluctant advocate, but she couldn’t stop;  Friends were dying, two of her sisters were diagnosed.  She wrote in a blog, “Every time I would even think about retreating from my advocacy work, something else would happen to forcefully remind me that we’re far from having the answers we need. I would love to live my life with few thoughts of cancer. This is not how I intended for it to turn out. It has become even more vital to me to advocate for better research, to change the conversation about what is done and how it is done.”

Maria Wetzel died yesterday, surrounded by her family.  It’s a tremendous loss for breast cancer advocacy, but also for so many of us personally.  Maria has been a part of my experience as an advocate from the beginning, since I joined this world after my own diagnosis six years ago.  We’ve worked on advocacy projects together, meeting at research symposia and panel reviews, and emailing back and forth about the latest study.  Once I was working at NBCC, I could always count on Maria to help with the hard stuff, but also to be the advocate who would ask me the hard questions.  Afterwhich, she would always directly follow up with a friendly question about one of my kids or a comment about the weather or birds in Michigan.  I’m glad she asked the hard questions of me and of all of us, and I will continue to ask the hard questions of myself and others to honor her.

Angelina Jolie had a rare genetic mutation that put her at risk for breast cancer.  Over 99% of women won’t have that mutation and won’t be faced with the difficult choices Ms. Jolie faced.  Unfortunately, Maria’s story is much more common.  One in eight women will develop breast cancer over their lifetime, and the majority of those women will have the type of breast cancer Maria did.  This breast cancer is hormone responsive, and can lay dormant for many years before reappearing and spreading.  Most people don’t understand, or don’t want to understand, this fact about breast cancer.  Even scientists know very little about why or how the cancer reappears, or most importantly how to prevent it.

Maria was relentless in pushing for meaningful answers.  To honor Maria, let’s continue asking the hard questions, of ourselves and of everyone in the breast cancer world, changing the conversation and breast cancer dialogue wherever we can.  Maybe there won’t be a national dialogue about Maria Wetzel and her decisions, but we can do our best to continue the work together, no matter how reluctantly, no matter what the challenges we face individually, to truly make a difference in the mission to end breast cancer. Maria would love to see nothing less from us.