Cold Spaghetti

Tina asked for bloggers to participate as guest bloggers for October, on the theme of Breast Cancer Awareness, in honor of her Mother, a breast cancer survivor.  Here is my cross-listed post.

October is Breast Cancer Awareness Month.  It is also Hispanic Heritage Month.

And breast cancer is the leading cause of cancer death among Hispanic women.

The Hispanic population is the largest minority group in the United States.  Hispanic Americans make up roughly 14 percent of the U.S. population, but they are the fastest growing segment, estimated to reach 20 percent or more by 2050.

Even when access to health care is adequate, for Hispanic women in the United States, breast cancer is more often diagnosed at a later stage, when the disease is more advanced.   Further, approximately two-thirds of breast cancer found in Hispanic women is discovered by accident – not by screening or mammogram.

Actually, according to a Kaiser Permanente study, the news gets worse.  When compared to non-Hispanic white women, Hispanic women are more likely to be diagnosed at a younger age, have cancer that has already spread beyond the breast, have tumors with cell type that have a poorer prognosis, have larger tumors, and have tumors that cannot be treated with some of the most effective medicines.

What’s the public health response?  Interventions aimed at increased screening, access, and education.  But is it enough?

If early detection and survival is the goal of Breast Cancer Awareness Month – then there has to be a conversation about an individual’s ability to access health care information and services.  Central to that conversation is the reality that those very life-saving information and services are unjustly linked to one’s racial, ethnic, socio-economic, and immigration status.

How do these dynamics play out?  Here is a local example.  If a woman cannot demonstrate access to or eligibility for some type of insurance (or have the ability to pay) – programs can deny her a screening for breast cancer.  Why?  The argument is that it is unethical to provide a screening for a disease when the patient will not be able to access treatment for it.  In the past year, one of the screening programs in New Orleans was shut down for this reason.

What is more unethical?  Denying screening?  Denying treatment?  Or needing any of coverage or eligibilities in the first place?

The bottom line is that women in our largest ethnic minority group do not have a good outlook when it comes to breast cancer.   And improving the outlook is about more than screening programs and access to medicines.  Striking at the heart of a serious disease means a serious look at our entire system of care and asking where treatment for breast cancer and survival of women lie within our values.

Via Exodus, I found the photography of Dulce Pinzon, and her “Real Life of Superheros” photography collection.  The exhibit showing Latin American immigrants in their everyday lives in jobs that are often overlooked… with a twist that highlights their important work and contributions.

After numerous failed attempts to upload it in whole to Google video, Paul shrugged his shoulders, chopped it in half, and put it up on youtube.  The second part overlaps a little with the first, I’m told.

Feedback is that it was a good interview.  I’ve sort of tried to see it once, but I’ve learned something… the agony of listening to myself speak is nothing when compared to the gripping torture of having to WATCH myself WHILE I speak.

Part One:

Part Two:

It is very difficult to buy into the apathetically correct wisdom of the meaningless of the dissertation exercise.  Specifically, this becomes difficult when I am confronted several times a week by people who actually, really, and truly care about it.  People who thank me for talking to them.  Comment on how I’m the first to have asked and how much better it feels to talk.  Who act at first surprised that I want to know, then hesitant that I should listen, and finally rest on the relief of sharing.

A few weeks ago, I dragged my Schweitzer cohort out of the comfortable confines of our usual space within the Louisiana Public Health Institute.  From the bright steel and chrome finishes of the modern downtown offices down a hard-to-find narrow road lined with modest World War II-era slab homes, to a damp and crowded trailer turned community center.  The Harahan meeting place for a small Hispanic Church.  There, several parishioners made us fantastic baleadas and coconut bread while we held our monthly meeting.  I gave a short talk based on my prospectus defense about race, racism, acculturation, and the health of immigrants from Latin America.  Then, our chefs joined the meeting and spoke about their lives.  Although I’d planned the logistics of the meeting, I had no idea who would come or what they would say.

By happy accident, Paul and the kids were there and ended up providing some companionship for another child (daughter of one of the church members).  Will taught her to play games on the Ipod, she supplied markers and Jesus coloring sheets.  Kate played the faithful sidekick, thundering up and down the small hallway past our meeting space.

Since that meeting, where some of my peers cried and all expressed deep thanks and appreciation for my risk-taking in how I’d conducted the session, several fellows have written to tell me about the impact of the night.  One specifically described how it had changed her interactions with patients in her current med school clinic assignment.  Another said that my talk was one of the best she’d had in graduate school and made her re-think how she looks at health research.  Other fellows have asked if I could bring members of the community to future events so that we can give larger voice to their experiences.  Maybe linking theory to practice isn’t as elusive as it seems.  Maybe it’s just a point of asking and listening?

And then there is this dissertation.  The one that matters to no one.  The one that is a means to an end, a task to be finished so that I can move on, hopefully, to more important things.

What a mess of information I’ve got!  Transcripts are en-route, surveys from last weekend’s health fair sit boxed on my desk, and somewhere on my computer is the prospectus… that document I defended as my research plan, my approved manual for what I was going to do to finish this degree.  Did I do what I intended to do?  Did I answer my question?  Honestly, I’m not sure.  I think I’ve strayed from my original purpose.  Perhaps because I keep getting distracted by what matters to someone.

Does a dissertation that matters to someone count?  How esoteric must I be to contribute to knowledge?  And whose knowledge, exactly, must be furthered for a dissertation to qualify as a quality document?  I used to understand the situation and was comfortable with it.  Now it makes me feel unsettled and unsure.  Whom do I disappoint?  My informants, the community I’ve worked so hard to be a part of, to show my support within?  Or my committee, who doesn’t care?

The “Greater New Orleans” interview airs tomorrow on WLAE channel 12 at 7 and 9:30 (and I think again at 2:30am?)  I feel certain that Paul will pull it from TiVo and put it online to ensure maximum embarrassment on my part; my parents pay him well to keep me tortured in this regard.

Three years plus 2 days ago, I rushed to New Orleans in the dawn of a Saturday morning in my parents truck.  Paul and I loaded it up with our precious things: paintings and figurines made by our grandmothers, our wedding album, photographs taken out of their frames and packed in envelopes, the paint-your-own plate Will had pressed with his then 18-month old hand.  At the time, our preparations were seen as extreme; neighbors strolled over to joke and insist on a drink.  But I had a bad feeling.  We returned to New Orleans almost 3 months later and our lives were forever changed.

The things I packed yesterday, on the 3-year memorial of the day Katrina came to New Orleans, were much the same as they were three years ago.  I took the same things from my house, with a little variation.  One less cat.  One additional child.  Same paintings, same figurines, same family photos wedding album.  We took care to back-up our photos, movies, and important papers.  I carefully covered all the paintings we couldn’t take in plastic bags and stored them in closets, took down pictures off the walls, placed vases and boxes inside drawers.  Paul secured the outside.  He had to use leftover pieces of wood from our renovations to cover our front door because the piece he’d used during Katrina is now the base of the Mardi Gras float we made for the Krewe of Abeona parade earlier this year.   That is the spirit of New Orleans: live life to the fullest and enjoy each moment, because you don’t know if you’ll be around for the next party.

For all the loss of innocence, disappointment, frustration, sorrow, and tragedy we felt from Katrina, we gained something, too.  Katrina kept us in New Orleans.  It taught us what it means to love a place, a space, and a community.  It taught us that a group of people with purpose can change each other’s lives and create a better place right in our own backyards.  It taught me, as a health professional who is trained to work in other communities, what it is like to be that ‘other community’.  The destruction of our city highlighted new needs and compelled us to stay and live our lives in this wounded, wonderful place.

What we learn from this coming storm?  Will it miss New Orleans completely, creating an enormous ‘cry wolf’ mentality at future threats?  Will it approach the city and challenge a whole different set of weaknesses not identified during Katrina?  Is history doomed to repeat, or just re-teach the lesson that no amount of planning can fix the vulnerabilities of poverty?

Mostly, I am anxious over the city’s newest population, those whose fears of leaving are much greater than the fears of staying.

As a child, I loved the stories of the old Testament.  There was something epic about the stories of escape, whole populations migrating to live better lives.  Such bravery in the face of threatening enemies and gaping uncertainty struck me as heroic.  Perhaps this is a reason why I am now drawn to work with people who brave the same challenges, those who risk death and uncertainty in ways I cannot personally imagine, in order to make a better life.  Being poor in the United States means a hard life, but being poor in a poor country means that each day is life or death.  A hard life is a better option for many, one that they will gladly take on even if it means living in fear of deportation, separation, and bigotry.  Evacuating a city under threat of a storm is a terrifying option to a family who lives under the radar.  What is worse?  A coming storm, or a uniformed official who may stop them for questions?

I feel guilty for being out of harm’s way with my family.  These are situations where I can be helpful: collecting research data, offering broken translation, mobilizing and organizing.  I worry that the families who are staying and are at risk are the same ones I’ve been working with for three years.  If that is the case, isn’t there something more I can do?

Three years ago, we were filled with uncertainty about our homes and community.  But I know now that I can make these anywhere, and that they will always be there for us in New Orleans.  Today, I worry for the people and things that the disaster committees and planners looked over.  I worry for the lessons that we didn’t learn from last time, when we showed the world what happens when it forgets about the realities of vulnerability, poverty, and race.

My head and heart are mixed and fearful.  I don’t know what to do and am not sure if there is anything I can do.  But wait.  And hope.