Blogging in the Netherlands

This afternoon, I’ll be departing for two weeks in the Netherlands. Diane Tucker, who heads up the Science and Technology Honors Program at UAB, and I are co-leading a program focusing on the sustainability efforts in place in Holland–one of the most innovative and technologically sophisticated countries in the world. What’s the alternative, really, when much of your living space is technically below sea level?

Seventeen students are joining us for this adventure. They come from a variety of disciplines: engineering, anthropology, business, English, public health.

We’ve set up a blog to record our experiences: http://uabsustain.blogspot.com/

Amsterdam, here we come!

Remembering Nepal

The news today is reporting a major earthquake in Nepal. Close to 2,000 have been killed, not counting the many Nepalese who are currently missing.

Several of the religious and historical sites that I visited in 2011 in the Kathmandu valley have been destroyed as a result of the shifting plates, and tremors have been felt in neighboring countries like India as well. Houses have crumbled to the ground, leaving many homeless. Those whose homes are still standing are too frightened to return since intense “after-quakes” are expected to cause further damage.

I can’t imagine the pain, fear and worry that must be affecting the people of Nepal, who are some of the kindest and most compassionate individuals I’ve ever met–despite their common plight of poverty. I wish them well and pray for my friends who are in the middle of the current turmoil.

Science meets survivorship

I’m preparing to head downstairs in the Philadelphia Marriot Downtown to make a presentation to attendees at a special reception honoring The Alabama Project. The event is being hosted by Cancer Today and the AACR Foundation in conjunction with the annual meeting of the American Association for Cancer Research.

Due to space constraints, I’ve brought just 8 of the 16 photos in the exhibit. These poignant and beautiful images are hung along the hallway through which all conference-goers pass. I like to think they bring a kind of humanity to sessions that focus on the science of cancer research. The faces of Whitni, Brittney, Debbie, Essie and others remind researchers of the people with stakes in the work they do every day.

Tonight, I’ll be speaking briefly about three ways in which the photos, and the women’s stories that accompany these photos, reveal the marriage of science and survivorship. As a survivor for more than two decades, I recognize in their experiences the many advances that have influenced the diagnosis, treatment and survival of breast cancer.

Specifically, I’ll mention advancements in science that address a survivor’s age (young women like Leah Price Wrensted not only get breast cancer, but also often have more aggressive forms of the disease), identity (African American women are disproportionately diagnosed with Triple-negative breast cancer, a less predictable breast cancer sub-type) and access (not all survivors have equal access to scientific advancements).

I hope the stories and images I share tonight will sufficiently reveal the strength and beauty of each of the Alabama women. I’m hopeful, too, that they encourage us all–scientists, advocates, physicians–to keep the conversation going about how science meets survivorship.

Today, I . . .

I’m one of those drivers who listens to NPR most mornings after dropping off the girls in carpool or on my way to work. Yesterday, I tuned in in time to catch The Diane Rehm Show. Diane was interviewing novelist Heidi Julavits, who recently published a diary/collection of essays/reflections on life called The Folded Clock.

I found myself drawn into the conversation. Diane and Heidi discussed at length the two words that began each chapter, or diary entry: “Today, I.”

At first, I thought that starting every chapter with the same words must seem a bit redundant, and frankly, simplistic, to the reader. But as Heidi read excerpts from her work–one a piece on spinning tops with her son and the other on buying a vintage necklace and then struggling over whether to give it to her mother as a birthday present–I appreciated the honesty and genuineness of her voice.

As the two discussed how the book had been composed, Heidi talked about the ways in which those two words, “Today, I,” took her into far more than what had happened on the particular day she was recounting. Her actions, words, and emotions from the day drew her to other people and their experiences, memories, questions, dreams. What began as apparent introspection developed into an examination of the world around her.

I sat down at my computer this morning and began a new chapter in my memoir about Edwina and me. It began, “Today, I . . . “

Alese

When I was diagnosed with breast cancer for a second time in 2004, I was assigned to a new oncologist, Dr. Carpenter. At his right hand was his nurse, Alese, who always knew just what to say when anxiety over a worrisome symptom crept in or I simply had to wait too long in a cold examination room for Dr. Carpenter to see me.

A little over a year ago, I received a letter in the mail informing me that Dr. Carpenter had decided to return to research full-time, so I would be assigned another oncology specialist. I’ve now seen Dr. Vaklavas a couple of times. He’s a nice guy, well-informed, up-to-date on current research and approaches to care. Still, I miss Dr. Carpenter. When it comes to cancer care, there’s some comfort in the familiar. Cancer survivors put a lot of trust in their health care team, and it’s a bit of a shock when someone on that team decides to follow a different path.

I received another shock when I returned to the oncology clinic last week and discovered that Alese wasn’t there. After some tiptoeing around the subject, Dr. Vaklavas told me the truth. Alese has advanced liver cancer. She arrived to work one day looking jaundiced, and within a few days, she’d been given a prognosis that isn’t terribly hopeful.

I feel for Alese and her family and wish I could tell her how much I’ve appreciated her kindness and support through the years. I’d also like her to know how very different every visit I make to the clinic will be without her there.

Taking responsibility

My brother’s frequent encounters with the law during the past several decades have taught me a thing or two about the circumstances under which those who break the rules are required to pay for their mistakes. The fact is that so many people violate the law that not everyone can be held accountable. Fines go unpaid, sentences are reduced, and folks like my brother who should be kept somewhere safe–for their own sake as well as for the sake of those whose lives they terrorize–are free to roam the streets.

Joe’s situation may be changing soon. He was arrested on March 30 when a staff member from a halfway house in Jacksonville called the local sheriff to report that my brother was threatening to harm himself or another individual at the facility. When the deputies arrived, they were able to talk to Joe and get him to calm down. Once they ran his name through the system, though, they discovered that he was listed as a fugitive fleeing from eight felony charges too horrific to mention in Pennsylvania.

Today, Joe goes to court. By this evening, he may be on a Department of Corrections’ bus back to Pennsylvania to face charges. Or, if the sheriff’s office there decides not to pursue his case, Joe will be released back on the streets of Jacksonville. Until next time.

As I sat at my computer this morning processing this latest development, Edwina called me. She’s been dealing with an incident that recently brought the police to her apartment as well.

Edwina kicked Tyrone out of her apartment a few weeks ago after she got fed up with his drinking, cheating, and shouting. All was quiet until Tyrone decided he wanted to come back. When Edwina refused to let him in, he and his nephew knocked down her front door. They then “shot up” her son Steve’s bedroom, “so bad,” Edwina said, that Steve “won’t sleep in there no more.”

Edwina called the police when the incident happened and was heading to the station after we spoke today to pick up the report. She has to present the report to her landlord so that she and Steve aren’t held responsible for the damage to the apartment and kicked out of the building.

Regardless of the landlord’s decision or actions taken by the police to make Tyrone pay for what he’s done, Edwina told me that she wants to move to another place.

“I don’t feel safe here no more,” she said.

The Sunshine State

This past week, I traveled to the “sunshine state” to give an invited lecture and workshop at the University of Central Florida in Orlando. The Writing and Rhetoric department was hosting its first annual symposium for undergraduate and graduate students in the program, and this year’s theme was “Engaging Your Worlds.” My task was to talk about the ways in which I have drawn on my identity as a breast cancer survivor and rhetorician to engage discourses of advocacy, science, and inequities in health care access and outcomes.

One point that I found myself coming back to again and again as I worked through my presentation and talked with attendees was the need to remain true to oneself. I encouraged the audience not to feel pressured to adopt positions or identities du jour when their personal strengths, interests, and backgrounds are powerful in themselves.

The example I drew on to support my advice was a familiar one from my writing–the disconnect I’ve experienced for more than two decades when the pink ribbon in all its cheeriness is presented as the default symbol of breast cancer. A pastel loop and the uplifting narrative it represents has never felt sufficient for portraying the range of emotions and struggles that we survivors endure. And I’ve said just that in many public venues.

My host at UCF, Blake Scott, a friend and fellow medical rhetorician, asked attendees to consider the kind of world they hoped to create through engagement. I hope that whatever their responses, they envision a world where they can speak freely and honestly.