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 cmoking 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!

September 15

Edwina reminded me the other day that her son Steve will be leaving prison on September 15. She can’t wait.

In all the time Steve’s been locked away, Edwina hasn’t visited him once.

“I told him I wasn’t gonna come see him til the day he gets out,” she told me.

“If I do, I’d be cryin’ all the way home cause he has to stay there and can’t come home with me,” she explained.

While Steve and Edwina haven’t seen each other face to face in many months, he calls her regularly. Sometimes several times a day.

“I thought inmates only got to call home once or twice a week,” I said when Edwina told me how often they touched base.

“Yeah, he got a cell phone in there, so he can call me whenever he wants,” she replied.

I didn’t ask any questions. My guess is that keeping a cell phone in your cell isn’t above-board behavior in prison.

Checking boxes and eating oreos

An envelope from Social Security arrived in Edwina’s mailbox a couple of weeks ago. It contained a packet of forms for Edwina to fill out to reapply for disability, and Edwina’s first response was to be defensive.

“Miss Rayan, I got to have that disability check,” she insisted. “I can’t work like this,” pointing to her problems getting around and completing the most basic of tasks by herself–dressing, preparing meals, even sorting through her prescription medicines.

I assured Edwina that the forms reflect a part of the process to make sure that people receiving disability still need it. Anybody with an ounce of common sense would see that Edwina’s situation hasn’t changed. If anything, it’s worsened.

After trying to fill out the portions of the form that Edwina and her sister Linda couldn’t figure out on their own, I headed to Edwina’s with questions and a pen. And oreos, which she had texted me to say she needed “real bad.”

Page by page, we worked through the form. It was slow going.

“Okay, let’s start with doctors at Cooper Green during the past 12 months,” I said.

Bit by bit, Edwina pulled out memories of doctors she’d seen and tests they’d ordered. At the Coop, most of Edwina’s medical care is related to her diagnosis of breast cancer.

Then we turned to Princeton Hospital, which sits just a block away from Edwina’s apartment. It’s where Edwina goes when she’s facing a medical emergency, like when she couldn’t catch her breath and ended up with a diagnosis of COPD, and eventually, an oxygen machine.

I recorded her prescriptions from the bag of bottles she keeps by her side, throwing out those that had expired or she no longer took.

Finally, we got to the part of the questionnaire focused on Edwina’s day-to-day activities, from the time she gets up until she goes to bed at night.

“I get up and wash my face and get something to eat,” she told me. “Then, I do whatever needs doin’ around the house, washing some clothes maybe.”

Edwina occupies herself in the afternoon with her puzzle books and spending time with family. She ends the day with dinner, some tv, and a bath. Then, it’s off to bed.

We finished the form to the best of our combined ability, and I told Edwina that I would slip the large blue envelope into the mail.

Time for milk and oreos.