Hello, friends.
We got this article from our esteemed comrades in the fight at
Breast Cancer Advocate . What they wrote made us think and feel deeply. As such, we felt it a perfect way to start our own blog.
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.
