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.

Maria Wetzel

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Comments

  • joysimha  On May 28, 2013 at 7:09 pm

    Laura, this is a truly beautiful piece about a beautiful woman and I am certain it will inspire others to think about our priorities in breast cancer. Thank you for saying all of this!

  • MBCNbuzz  On May 28, 2013 at 7:35 pm

    Reblogged this on MBCNbuzz and commented:
    NBCC reflects on Maria Wetzel’s 17 years as a breast cancer advocate: “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.

  • Annette Bar-Cohen  On May 28, 2013 at 7:56 pm

    You captured Maria beautifully. And juxtaposed to the national Jolie dialogue, you put her life, her advocacy work and the real issues about breast cancer out there for all to see. If only they would. Good-bye, Maria. And thank you, Laura.

  • Marjorie Gallece  On May 28, 2013 at 8:30 pm

    Thank you, Laura. Hopefully, as we move through and beyond our grief over losing Maria, we’ll also redouble our efforts to promote and support funding of responsible and intelligent research to discover the causes and prevention of metastases. That’s how we can honor Maria and her legacy best. Anything less is not enough.

  • Debbie Laxague  On May 28, 2013 at 9:03 pm

    Thank you, Laura. Beautifully said.

    • Maria Lyzen  On May 28, 2013 at 11:28 pm

      Laura…a beautiful gesture to write about Maria…..Good bye Maria and thank you for all the work, time and effort you gave to breast cancer. We will miss you.
      Maria Lyzen, MiBCC – “the other Maria”.

  • Joan Howaniec  On May 28, 2013 at 11:36 pm

    Thank you Laura. What a lovely piece.

  • Pat  On May 29, 2013 at 8:07 am

    I just forwarded this to CNN. Pat

  • suzanne hicks  On May 29, 2013 at 9:37 am

    thank you for honoring maria with such a beautifully written portrait, laura. i,too, learned much of my advocacy from her clear-eyed approach, and will miss her good spirit enormously……

  • Holly Anderson  On May 29, 2013 at 10:05 am

    This is the most important blog posting I have ever read. I am not sure it captures the absolute intensity with which Maria fought her cancer, but it comes as close as I can imagine. I wish I could imagine Maria back with us. I wish I could imagine the women (and men) whose lives have been lost… alive again. I wish I could imagine how we get out of this… how to figure out what turns on the mechanism that allows a bunch of cells to go haywire… and how to turn it off. It’s damn scary. My fear is that nothing we do, or are going to try to do, will matter. There I said it. What if nothing we eventually do matters? In the meantime, we go on. We keep trying. For the Maria’s.

    • joysimha  On May 29, 2013 at 6:02 pm

      Holly, the only sensible answer I have to your very good question is that if we don’t try to end breast cancer no one else will. We must set a huge goal and do everything we can to accomplish it. At least we will not say that we did not try. Maria expects us to try. All my very best to you, Joy

      • Holly Anderson  On May 29, 2013 at 6:08 pm

        Thank you, dear, dear Joyous. It’s hard to think about life without Maria… always there to lend an ear, a thought, her incredible brain. It was pouring rain when I wrote this today. The sun is out, spirits are lifting, eyes are open and I am looking for her breathtakingly beautiful presence in, of all things, birds. Thank you for taking the time to respond. And I wholeheartedly agree with you. If not us, who? xoxo

  • Michele  On May 29, 2013 at 12:44 pm

    Thank you Laura. From coast to coast Maria made a difference. Her advocacy and legacy needs to be acknowledged and continued. She will be missed and we must carry on through the NBCC advocacy work to prevent breast cancer and metastasis.

  • Marlyne Rohan  On May 29, 2013 at 12:56 pm

    My quick hand of memory does jiggles with cigar boxes filled with old memories, and out comes October, 2011: Stage 4 Maria, on a bird-watching boat, fully in the moment, filled with joy, excited about sighting a fishing heron.
    The image fades to an hour later, an exhausted Maria, needing rest, going to her room….and instead of sleeping, sitting for hours with her lap-top, working, networking, to further research into stage 4 cancer. May we continue her work.

  • Valerie Fraser  On May 29, 2013 at 1:28 pm

    Maria’s courage, dedication and service to others is a testament to her unending advocacy work and inspiration to those whose life she touched. Her loss is tremendous. Thank you Laura for sharing this heartfelt tribute. Valerie

  • breastcanceradvocate  On May 29, 2013 at 1:48 pm

    Thank you all so much for your comments. A real outpouring of love and respect for Maria, so deserved, and a commitment to carry on her work, which truly honors her.

  • Sandy  On May 29, 2013 at 1:59 pm

    What a wonderful tribute to an incredible woman. Maria fought to help others right up to the end. Her positive attitude was an inspiration to others. Thanks, Laura.

  • Pat Haugen  On May 29, 2013 at 4:13 pm

    Thank you for this heartfelt tribute to an extraordinary woman, friend, and advocate. You speak for all of us. Maria made such a difference, we have been blessed by her presence in our lives. Pat

  • Carol Matyka  On May 29, 2013 at 7:50 pm

    As Laura so beautifully writes, Maria was an extraordinary advocate, colleague and teacher to many of us. She faced her disease with grit and determination, all the while showing us how to live a life full of grace and dignity. Her passing is one more of far too many reasons why we must end breast cancer. Thank you, Maria, your work is done; we will carry on. Carol

  • Marcy Manning  On May 29, 2013 at 8:38 pm

    Laura, thank you so much for this fitting tribute to Maria. She had a tireless dedication & calm steadiness about her. I hope that in time her efforts & others’ efforts will yield answers and breakthroughs. — Marc

  • Sandra Spivey  On May 29, 2013 at 9:02 pm

    I was lucky enough to know Maria for several years through NBCC. I remember when she was diagnosed with metastatic cancer, seven years after my stage IV diagnosis. She was a strong advocate for all of us.

  • Marlene McCarthy  On May 29, 2013 at 9:45 pm

    Beautifully written, Laura. Thank you.
    You and others have captured the essence of Maria, a remarkable woman. I will add that she became a beacon of hope for me when I was first diagnosed with metastasis…sending me frequent emails initiating our practical and scientific discussions. I miss her already. I pray she is resting in peace.
    We must ALL be part of the solution to end beast cancer….and our best hope for doing that is through NBCC’s Deadline2020 campaign. Committment, money, energy and advocacy are needed to be successful. Let’s ALL do our part…in honor of Maria and all the incredible women who have lost their lives to this disease.

  • Nancy  On May 30, 2013 at 12:14 am

    An extraordinary tribute to an extraordinary advocate. Thank you, Laura, for writing what is in our hearts and on our minds. Your piece should be the one “above the fold” on newspapers worldwide.

  • Susan Zager  On May 30, 2013 at 1:32 pm

    Laura, thank you for this beautifully written post about Maria Wetzel and her incredible dedication as a patient advocate. When you wrote about how she had breast cancer in 1996 and hoped to “be one of the lucky ones,” that being not the 30% that recur which she did in 2005, we must do everything to continue research that will help those with mets stay alive while we work on Deadline 2020 to end this cruel disease. We as fellow advocates all know that 1 woman is dying every 14 minutes in the US alone and it just keeps getting harder because these are our fellow friends and advocates and not just statistics. I hope that newspapers put this beautiful tribute in their news and start getting the realities of this disease to the public.

  • breastcanceradvocate  On May 30, 2013 at 2:36 pm

    Thanks again to all of you who have left comments. I believe the current system failed Maria and continues to fail us all, those with mets and those at risk. We need a complete overhaul.

  • Nathan Wetzel  On May 30, 2013 at 7:04 pm

    I suppose I really was fourteen when she was first diagnosed. After seventeen years, more than half my life, it really does feel like a long time ago.

    In the past few days, I’ve seen a great number of people say beautiful things about my Mom, about her insight and tenacity, her perceptiveness and intelligence and the sheer zeal with which she worked at this important cause.

    For me, it was the humanity she brought to it that was so important. It would have been easy to lose oneself in the ordeal she went through, but start to finish she bore it with the best humor possible. It was, I think, what made her so capable, and so passionate. The memory that jumps out at me most distinctly is of asking her one afternoon, “What is love?” I believe it was for a writing assignment of some kind. She told me, “Love is a son who’s not embarrassed by his mother’s baldness.”

    I never was; she was never less than beautiful.

    It was her own love that made her so passionate, that led her to make such a difference for so many people.

    We’re less without her… but greater by far for her time with us.

    • Marlene McCarthy  On May 30, 2013 at 8:10 pm

      Nathan, thank you for your sharing. It is obvious that you are a tribute to your wonderful Mothers’ love. God bless you with beautiful memories and may they someday ease the pain in your heart.

    • breastcanceradvocate  On May 31, 2013 at 9:25 am

      Nathan, your are right of course. It was your mother’s humanity and love that we all felt, and we are all greater for having known her. And it is clear that spirit and heart are carried on in you. Thanks for sharing.

    • Marcy Manning  On May 31, 2013 at 4:39 pm

      Oh, Nate, this is a beautiful tribute to your mother! I can’t help but hope that there’s a way in which your dear mother Maria is able to hear & feel this great tribute! But I KNOW she knew during her lifetime. That IS love! May you find comfort in knowing that fact & knowing how much you enriched your mom’s life, Nate!

  • segmation  On June 3, 2013 at 1:36 pm

    What a nice tribute to Maria Wetzel ! My thoughts go to her family and other families that have to through cancer! I hope there is a cure in our lifetime!

  • cancerconfidential  On June 3, 2013 at 2:00 pm

    I was intersted to look at your site and thought you might be interested in mine: http://www.cancerconfidential.wordpress.com Your friend was an inspiring lady. Please pass my site on to anyone whom you think it might help.
    Fiona

    • Marlene McCarthy  On June 3, 2013 at 6:31 pm

      I am annoyed that you felt the need to provide your personal story to this group of advocates are sharing memories and sympathies of a wonderful woman who was an extraordinary advocate for others and lived a purpose to end breast cancer.

  • Kwanele Asante-Shongwe  On June 3, 2013 at 3:05 pm

    Beautiful and heartfelt celebration of a life lived with purpose, Laura. Was feeling despondent about advocacy today.Thank you for giving me reason to continue working on Deadline2020. We need to honor the 99% of women globally whose stories of breast cancer hardship will never make the news.

  • lissyann  On June 3, 2013 at 7:48 pm

    Beautifully said.

  • NotDownOrOut  On June 3, 2013 at 11:04 pm

    My heart is breaking. What a wonderful piece of writing about a woman worth reading more about.

  • bliss steps  On June 4, 2013 at 5:05 am

    ~ Great to hear that we still have modern heroes like Maria. Thanks for your enlightening and inspiring post. She is definitely one of the unsung heroes of our generation. Also, congrats to you on being FP. – Bliss, The Lurker’s List

  • Sandra Hersey  On June 4, 2013 at 11:12 am

    I’m a cancer survivor thanks for posting

  • maverickkajal  On June 4, 2013 at 4:57 pm

    May Maria’s soul rest in peace. But there is no denying the fact that the spirit of her advocacy for practi

  • Doe  On June 4, 2013 at 7:35 pm

    Thank you – I only knew Maria through the BC List…her story needs to be published and told…….thank you Maria for your advocacy to help find a cure…..you are a true heroe……

  • ideaconsultingpk  On June 5, 2013 at 3:55 am

    Reblogged this on Ideas That Inspire and commented:
    “Dedicated to all those who have lost the fight, and those who continue to fight”. May was Breast Cancer Awareness Month but we came across this post only yesterday. It celebrates Maria Wetzel a long-time advocate for breast cancer awareness and increased research. This is a very moving piece recounting little details that made Maria loved by her peers. The fight against cancer is a personal one for us and we wanted to honor Maria’s memory and pay our tribute to her determination, her passion and her advocacy work against breast cancer. Maria Wetzel a lady who truly inspires.

  • soireadthisbooktoday  On June 5, 2013 at 2:20 pm

    Reblogged this on So, I Read This Book Today . . . and commented:
    As a breast cancer survivor, my heart hurts to know that Ms. Wetzel is gone. My deepest sympathies to her family and friends.

  • Feng Shui By Fishgirl  On June 6, 2013 at 2:24 pm

    I applaud Maria for continuing her advocacy work —LIVING— instead of focusing on dying. This is what my mate is doing right now since his cancer returned.

  • Paper Bound Love  On June 7, 2013 at 7:20 am

    Very inspiring. Thanks so much for sharing Maria’s story and yours too <3

  • painspeaks  On June 7, 2013 at 1:56 pm

    Reblogged this on The Daily Advocate By Painspeaks.

  • carolann44  On June 7, 2013 at 4:13 pm

    Thank you for writing this loving tribute for Maria. We will miss her at bcmets.org where I posted this link and where we ‘Metsters’ all kept in touch with Maria throughout her illness.

  • Beverly Canin  On June 10, 2013 at 11:28 pm

    I have been quietly mourning Maria’s death since I learned of it two weeks ago, but am just reading this powerful, inspiring, incredible remembrance of and tribute to this remarkable woman with a breast cancer story that “sadly is not unique, but typical. Run of the mill.” It is and has been hard not to be discouraged. But I know and am reminded – thank you, Laura – by Maria’s own words that we must let her death (and those of many others) be a something else that keeps us from retreating from our advocacy work and, in her honor, – thank you again, Laura – “continue asking the hard questions, of ourselves and of everyone in the breast cancer world…………..”

  • the optimistic pessimist  On June 13, 2013 at 10:43 am

    One year from my own diagnosis I feel pathetic. Powerless. What can I do?

    • Marcy Manning  On June 15, 2013 at 3:02 am

      Your feelings are not unusual. It took me 18 months to find my new normal after the diagnosis. I’m 13+ years out from the diagnosis now. Hoping you discover, as I did, that you get to a point at which you’re more at peace.

  • Ann  On June 23, 2013 at 2:43 pm

    Reblogged this on Care of the elderly? and commented:
    This terribly sad story of a brave woman’s life and struggle with breast cancer should be one which all readers should read.

Trackbacks

  • […] MBC. Because there are 113 deaths a day from MBC in the US alone, you can also read an incredible tribute to Maria Wetzel who also died from MBC the same day as Angelina Jolie's aunt at: […]

  • By My Last Day | Breast Cancer Advocate on December 31, 2013 at 3:42 pm

    […] died from breast cancer metastasis this year and it was a tremendous loss for so many of us, as I wrote about in May.  But she was only one out of 40,000 to die from the disease this year, every one of those women […]

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