Safe and scared

Going to work this week has been, well, scary.

On Monday evening, four UAB students were held up at gunpoint in an on-campus garage. They were robbed, sexually assaulted and beaten before the suspect ran for the elevators–showing his mug to the surveillance cameras in the process. Police have finally released a name, but the perpetrator is still on the loose.

Two of the students sit in my classroom, eyes focused on their work. Determined to keep moving forward with their plans for a positive college experience.

Everyone on campus is feeling anxious. Parking is remote, if there is in fact an empty space by the time you arrive to the university. Classes run late some nights, and students and faculty make their way, solo or in small groups, to cars and dorms.

It’s a new kind of survivorship. We’ve issued complaints, insisting that the university provide better security–more police officers assigned to the area, better lighting, closer parking, improved locks on doors in particular buildings. We’re waiting in hope that safer comes sooner rather than later.

I find myself wondering how this recent incident will affect my students in the long run. For now, they put one foot in front of the other.

I hope they find some peace once the suspect is apprehended, but I doubt they will ever again feel completely safe.

Too much pink

My pal and editor at Cancer Today, Jessica Gorman, forwarded me a link to a story about some breast cancer survivors’ dread of “pink October”:

The story focuses on women with metastatic breast cancer who feel left out of the conventional upbeat narratives that circulate every Breast Cancer Awareness Month. I found the point made by one survivor particularly telling. She notes that her advanced disease doesn’t correlate with not eating right, not exercising enough, or not having a sufficiently upbeat attitude.

Breast cancer is simply unpredictable.

Mountain Brook to West End

It’s been a day of extremes.

I met a good friend who is nearing the end of radiation treatments for breast cancer for lunch in a quaint Italian restaurant located in Crestline Village in the suburb of Mountain Brook. This particular burb is known in this part of the world as a place of privilege, consistently ranked as having one of the highest per capitas in the U.S. Mansions line winding roads, and each of the “villages” that make up the commercial district is characterized by boutiques, specialty shops, and unique restaurants–you know, the kind you can walk in and out of without a word from anyone occupying the counter.

Following lunch in Mountain Brook, I made my way to Edwina’s apartment in West End, in an area called Arlington. Her apartment lies just a few blocks from a large city cemetery, and numerous funeral homes, monument and flower shops, and churches circle around Edwina’s neighborhood.

From a commercial perspective, business folks in this area seem to know their market. Shootings are a common occurence in West End. Many residents spend their lives walking the streets around Arlington (in part, because the family car’s broken, out of gas, or been confiscated by one or another quick cash/title loan companies) and end up (much too soon) in the graveyard. The houses in this area are far from mansions–those still standing reveal make-shift roofs, broken windows and doors, and porches that sit at an angle–looking like they’re just waiting for the opportunity to collapse.

Today, the contrast between the “Brookies” and the “West Enders” was more immediate than usual.

I pulled into the parking lot of Edwina’s apartment building to find her husband Tyrone (who’s apparently back in Edwina’s good graces), brother Joe-Joe, and Alexis from the upstairs apartment (I’m still trying to sort out the relationship there) sitting outside keeping watch over a slew of items: an old bicycle helmet, clothes, a crockpot, random knick-knacks and side tables, to name a few.

“What are you guys doing?” I asked them. “Having a garage sale?”

“Yep,” Tyrone chimed in. “We tryin’.”

I headed inside and chatted with Edwina for a bit, getting an update on everything from her boy’s latest run-ins with an ex-girlfriend to how well she’s doing with losing some weight. On the way out, I paused to take another look at some of the items up for sale in the front yard.

Turns out, the sale officially starts tomorrow. While there won’t be an announcement in the classifieds, Tyrone’s sister was on her way to help make up some signs to post along the road.

“We’ll be taking this stuff inside tonight and then bringing it all back out again in the morning,” Joe-Joe told me.

“We don’t want anything gettin’ stolen,” Tyrone said, adding with a smirk that “Miss Ryan, in this neighborhood, they steal it right out in the daylight.”

“I think that happens just about anywhere,” I told him, turning towards my car.

Well, maybe not in Mountain Brook.

The business of life and death

A heart-wrenching story in today’s NYT reveals the instritutional grip over the dying and their families in the United States:

While there’s certainly a need for measures of control in the healthcare system, especially as the average lifespan increases, it’s sad to realize that a life well-lived can come to an ending that reflects none of an individual’s desires.

Risky business

A story in today’s New York Times addresses the uncertainty of what to do with the results of several genetic tests. Since genetic testing points to the risk of disease or disorder, but typically not its inevitability, having access to positive test results can create its own host of problems.

Remove a body part that might be the site of a future malignancy?

Ramp up surveillance to ensure the prompt detection of suspicious symptoms?

Urge blood relatives to seek their own answers regarding genetic risk?

Ten years ago, following my second diagnosis of breast cancer, my oncologist recommended that I be tested for BRCA1 and BRCA2. Bruce and I headed to UAB’s Genetics Center, where I had my blood drawn to send to the one lab in the Northeast that could unlock this particular genetic mystery.

A few days passed, and I called the lab to cancel the test. The reasons for my change of mind had everything to do with the issues mentioned in the NYT‘s article. I’d been told that three results were possible:
* testing positive for BRCA1 or BRCA2, suggesting an increased risk of developing breast and/or ovarian cancer
* testing negative for BRCA1 or BRCA2, eliminating them–but not other as-yet unidentifiable genetic glitches–from my profile as a survivor
* testing ambiguity, a result that suggests some type of genetic irregularity that is indeterminate

The way I saw it, the only clear finding would be the discovery of one of the two BRCA genes. Bruce and I had a hard time wrapping our brains around the idea that a “positive” genetic conclusion would be the only outcome that offered information of any use. Even then, the information addressed the risk, not the certainty, of another run-in with cancer down the line for me and possibly our daughters.

Recently, my oncologist of ten years moved back to the lab to pursue research. I’ve been assigned a new oncologist, and he is encouraging me to undergo genetic testing. Celia and Helena are older now, so the information could be of potential use to them and the decisions they make about their bodies.

The phone number for scheduling an appointment at the genetics lab sits on my dresser, where I put it more than four months ago after my initial consult with my oncologist. I haven’t yet reached a decision about following through.

On a side note, Dr. Mary-Claire King, who’s mentioned in the article as one of the scientists who discovered the BRCA1 gene, will be the featured speaker at a HudsonAlpha event I’ll be attending in Huntsville, AL in November. The Alabama Project will be gracing the walls as Dr. King offers her thoughts on genetics and risk in 2014.

Family secrets

During a recent outing, Edwina told me that her auntie, her mother’s sister, had just passed away from breast cancer. According to Edwina, “the service was real nice,” but she was surprised to learn that her auntie had been suffering from the disease since 2000.

“I thought she just found out she had breast cancer,” Edwina said, still a bit in shock from her discovery.

“Why do you think she never told you?” I asked her. After all, Edwina’s aunt lived in Fairfield right here in Jefferson County, not much of a drive for Edwina and brother Joe-Joe when the car they share is running,

“I don’t know. She just never talk about it.”

I started thinking about the secrets families keep, especially when it comes to diagnoses (confirmed or suspected) of diseases that carry a stigma. Even though there’s been a lot of progress over the past few decades in ridding cancer of some of its shameful associations, that fear of talking about a family member afflicted with the disease is still a reality in many African American communities–at least in this part of the country.

When I visited Nepal a few years back, I met several families who were actively keeping news about a family member’s illness from the individual suffering from a disease that might very well lead to death. It reminded me of a time in the U.S. when a patient might grow weaker and weaker without ever knowing the truth of his/her circumstances.

While Edwina’s auntie clearly knew she’d had cancer for well over a decade, the news wasn’t for public consumption. Not even for family.