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.

Pulling the pink plug

Apparently, Proctor and Gamble has had enough with the NFL’s recent scandals involving players charged with acts of domestic and child abuse. Several reports issued today indicate that Breast Cancer Awareness Month will be a tad less pink this October at the football stadium: http://www.latimes.com/sports/sportsnow/la-sp-sn-nfl-procter-gamble-20140919-story.html

According to news reports, the company will still contribute funds pledged to breast cancer charities. But players won’t be donning pink socks, helmets, or anything else in partnership with P&G in the name of the cause.

Doctor’s orders

Edwina called me late yesterday afternoon to tell me that she’s in the hospital at Princeton, a facility just a couple of blocks from her apartment. On Saturday, she said, she got “to coughing real bad” and “couldn’t catch [her] breath.” The ER folks clocked her oxygen level at 80%. The docs also discovered blood clots in her legs, so Edwina’s been receiving blood thinners along with oxygen and steroids for her COPD.

I made my way to Room 5117 this morning, bearing gifts of red grapes (Edwina’s favorite!) and a word search book focusing on the scriptures. Edwina’s face lit up when I handed them over.

We talked for more than an hour. Edwina told me that she was ready to go home, since she has an oxygen machine and her CPAP machine there to use.

“The doctor says I got to use both of my machines all the time,” Edwina told me, looking weary at the very thought.

Plus, she said, “I kicked Tyrone out. He make my blood pressure go up. And Joe-Joe [Edwina's brother] says he ain’t gonna smoke in my apartment anymore or let in anybody who do.”

Edwina told me she was worried about how to get all the prescriptions she was probably going to need when she was released from the hospital.

“I already get four medicines,” she said, listing them off on her fingers. “And Medicaid only lets you get five prescriptions every month.”

I requested a visit from one of Princeton’s social workers, who arrived within ten minutes to talk over the problem with Edwina. Mandy told Edwina that she’d send the pharmacist from the hospital up, telling Edwina that this woman is particularly effective at finding the cheapest routes possible to filling prescriptions. Through coupons and special delivery plans, Mandy thinks Edwina might be able to manage.

The doctor’s visit interrupted our conversation, as a tall man in a white coat strode in with a team of doctors in training.

After a brief check on Edwina’s breathing, the doctor told her that she’d be going home either later today or tomorrow.

“You’ve got the oxygen machine and the CPAP at home and I want you to use them,” he said sternly.

“And,” he continued, “either you quit smoking or you’ll die. It’s that simple.”

I chimed in with a question about how to make the nicotine patches more afforable for Edwina. Her last attempt to use them cost her $85 at Wal-Mart, and she wasn’t able to buy more than one box.

“How much do cigarettes cost?” he replied.

“‘Bout $4 a pack,” Edwina said.

“So what’s a better deal, cigarettes that are gonna kill you or patches that are going to help you stop and save your life?”

“Yes, sir, I know I got to quit,” Edwina responded, lowering her head–a sign that I’ve come to recognize as Edwina’s response when she’s embarrassed about being scolded.

All I could think as I walked down the hospital hallway at the end of my visit was how hard the doctor’s reasoning would be to implement. I’m certainly not in favor of Edwina resuming her smoking habit, but the fact is that she can afford $4 many days to pick up a pack of cigarettes. But her lack of money management skills make reserving $85 for a box of nicotine patches close to impossible.

In situations like this, I’m reminded of the need for medical professionals to educate themselves about the circumstances of many patients’ lives that make following doctor’s orders a lot more complicated than it might seem on the surface.

Poor doors

An article from msn.com addresses the different treatment New York residents are receiving based on the rent they pay: http://news.msn.com/us/haves-have-nots-divided-by-apartment-poor-doors

Apparently, those who pay a lower rate, thanks to programs meant to make housing more affordable for individuals with lower incomes, lose out on various perks: access to on-site fitness centers or front door entrances. While some are just fine with these disparate arrangements, others are comparing it to a caste system.

Return to Chi-town

Following a visit to Grandma and Papa’s farm in Illinois, the girls and I headed to Chicago for a couple of days. I lived in Chicago during a few gap years between high school and college, so I told the girls Chi-town was a bit like home, too.

Like a lot of places we revisit, Chicago was both the same as I remember it and very different than my memories from more than three decades ago. The streets were the same–same busses I used to take to work (with steeper fares these days) and familiar landmarks to remind me to watch for my stop. But much had also changed. The big department stores like Marshall Fields and Carson Pirie Scott that I used to visit at Christmastime to window shop no longer grace State Street, and my old neighborhood on Dearborn has a whole new look.

And while I fell right back into the pace of Chicago, scurrying across streets filled with traffic while dodging oncoming crowds, the girls were a bit stunned. Helena couldn’t get over how many shoves she received making her way down Michigan Avenue and Celia was floored by a conversation two women on the bus had about where she was sitting (within earshot of Celia!).

I told the girls that they were noticing these things because they’d grown up in the South.

I also told them that when I moved to Chicago at 17, I learned a lot about how to stand up for myself. Chicago made me street smart, teaching me how to adapt to new places–a lesson in survival that I’ve relied on many times in places and circumstances around the globe. Both of my daughters were amazed that I made it in such a tough terrain where, “obviously,” Helena noted, “people do and say just about anything they want!”

At one bus stop en route back to our hotel, a woman boarded and began a dialogue with the driver about getting dropped off at a certain street typically not on the route. After much back and forth between the two, the driver raised her voice to the woman: “Just get on the bus, lady!”

Helena quickly tapped me on the shoulder, whispering “Mommy, she didn’t even say ‘please’ or ‘ma’am’ to that lady!”

Nope, she sure didn’t.

Where the Heart Is

Last week, author Billie Letts passed away from pneumonia: http://www.nytimes.com/2014/08/05/arts/billie-letts-where-the-heart-is-novelist-dies-at-76.html?_r=0

I had a chance to meet Ms. Letts when she attended the Association for Women in Communications Conference in Tulsa, Oklahoma as an invited speaker and helped to pass out Clarion Awards. I was lucky enough to win a Clarion for my article “Homeless with Cancer” in CR: Collaborations–Results, renamed Cancer Today, and to stand by Ms. Letts for a photo or two. (See my post on October 17. 2011: “A special night.”) She was a humble woman, beginning her presentation with the comment that she was shocked to receive a phone call from the conference organizers asking her to fill a role that had been occupied by a multitude of well-known women in the media (Ann Curry being the most recent example at the time). Letts spent many years teaching English while she wrote in her spare time, which I imagine was sparse given the stacks of student essays she likely had to read.

I didn’t realize until I read the obituary in The New York Times that unlike many of Oprah’s picks for books/authors to be featured on her daytime show, the intimate book club gathering for Ms. Letts’ novel Where the Heart Is took place at a snack bar in a Wal-Mart outside Chicago.

How to write an op-ed

Karen Russell Mills, administrative manager for Survivor and Patient Advocacy at the AACR (and a good friend to boot!), recently posted an article I wrote on “How to write an op-ed”: http://www.aacr.org/AdvocacyPolicy/SurvivorPatientAdvocacy/Pages/How-To-Write-an-Op-Ed.aspx

The article is part of the “how to” series offered to fellow survivor advocates who visit the pages devoted to their mission.

Happy publishing, everybody!