Memories of a different life

A report issued in the European press in March finally made its way to my parents’ local newspaper:  A retirement home called Alexa Seniors’ Residence in Dresden, East Germany is assisting elderly Alzheimer’s patients by taking them back to another time.

By recreating the Communist era, filling the residence with decor from before the Berlin Wall came tumbling down, offering residents clothing from the time, and even providing a shop filled with the kinds of products that residents would have once seen for sale in their local neighborhoods, patients with dementia return to a familiar scene. And to a moment when they were confident in what they knew and what they could do.

One of the early news stories–with lots of photos of the retro environment created at Alexa–can be found here:  http://www.dailymail.co.uk/news/article-4276120/Home-helps-Alzheimer-s-patients-recreating-East-Germany.html

While it’s hard to imagine how returning to an era of control could be a good thing, sometimes the kind of memories are less important than simply the possibility of remembering. As I’ve observed my mom’s painful decline into dementia, I’ve noticed that many of the moments she recalls most vividly are also the most painful–the events and people from her past with which she has experienced the least amount of closure.

 

Advertisements

Trump and tractors

Today marks my 15th day in Illinois. I headed this way on Monday, April 24 after receiving a phone call from the ER nurse at the local hospital in my hometown telling me that my 81-year-old father had been admitted with congestive heart failure. It just so happens that my 80-year-old mom was being transferred to a nursing home on the same day to address a damaged knee following a bad fall at my parents’ home the week before.

The past 15 days have brought much strife.

After local doctors confirmed that Dad’s heart was operating at minimal capacity, Dad was sent to a larger facility in a nearby town. More bad news followed. A heart catherization showed extensive blockages in two of his arteries, a leaky valve, and confirmation of a number of other heart issues that have grown worse with age. During the past week, Dad and I have sat at home counting down the minutes until he can go to a more sophisticated cardiac center for a needed, albeit risky, procedure.

In the meantime, Mom has continued to struggle with her injuries and with increasing confusion and signs of dementia. Once or twice a day, I set out for the nursing home to visit and field phone calls in-between visits to help Mom sort out where she is and what’s going on in our lives. We spend time arranging things in her room at the nursing home and talking about things we’ve done over the years–a visit to the Norman Rockwell Exhibit at the Birmingham Museum of Art, seeing the Rockettes Holiday Spectacular one Thanksgiving, our mother-daughter trip to Australia, and other memories that are ingrained in Mom’s mind.

Dad and I pass the days {and nights} talking, reading farm magazines (when he feels up to it) and writing (when I feel up to it), and watching television. Dad’s favorite channels are CNN for coverage of all things political and RFD (standing for Rural Free Delivery, the name of the postal service that delivered directly to rural areas). RFD shows address everything from crop yields to cattle feed to the pleasures of an agrarian life.

“All we watch is Trump and tractors,” I joked to Dad earlier today.

“Yeah, that’s about all there is,” he said with a smirk.

We both know that there’s so much more.

 

 

Science needs your cells

Tonight, the film adaptation of Rebecca Skloot’s book The Immortal Life of Henrietta Lacks debuts on HBO. The book is one of my favorites. The story of Henrietta Lacks (and her descendants) alongside the evolving discovery of the seemingly infinite replication of HeLa cells taken from Henrietta’s malignant tumor is brilliantly told by Skloot. And, the work effectively reveals the complexity of ethical decision-making when individual bodies are involved in the process of furthering scientific knowledge. My class in Writing and Medicine just finished reading the book, and  the students had much to say about the benefits and drawbacks of using discarded bio-specimens for research without patients’  full knowledge or permission.

Of course, in the story of Henrietta Lacks, issues of class and race influence how readers might interpret the use of one woman’s cells in millions of research studies around the world since the 1950s. In a story published in The New York Times this week, though, Holly Fernandez Lynch and Steven Joffe caution society against privileging individual autonomy over scientific progress. Simply put, human tissue–which is often disposed of following surgical procedures, anyway–is needed by researchers who seek to better understand how all of our bodies work and how to address those diseases that hinder us.  https://www.nytimes.com/2017/04/21/opinion/henrietta-lacks-why-science-needs-your-cells.html?emc=edit_th_20170421&nl=todaysheadlines&nlid=44005038&_r=0

I don’t know that there is an easy answer to the central dilemma explored in Skloot’s book. From an admittedly (selfish) academic perspective, that complexity is what most fascinates me about science and medicine.

An unfortunate delay

Early yesterday morning, I headed to Princeton Hospital to meet Edwina, who was scheduled to have surgery to remove the uterine fibroids that have been causing her great pain for more than a year. I’d been sitting alone in the waiting room for 20 minutes or so when Edwina and Tyrone wandered in, and we began the process of waiting for Edwina to be checked in and led back to the pre-op area.

I could tell as soon as Edwina sat down that she was anxious about having surgery. She hadn’t heard the results of a biopsy the doctor had done the week before, and she feared that the surgery would reveal that she is suffering from something more serious than benign tumors.

“What if I got cancer again, Miss Rayan?”

“Then we’d face it just like you did last time around,” I replied.

Edwina reminded me that she’s been dealing with a lot of pain “down there” for much too long, and she just wanted to “get it done” and not have to hurt all the time.

As we talked and caught up on family and recent challenges–for Edwina, a car in the shop and too many people wanting to crash on her couch–Tyrone stood up to head down to the lobby for a smoke. As he got ready to leave, he handed a Styrofoam cup filled with the coffee he’d just discovered in the corner of the waiting room to Edwina to hold.

Without skipping a beat, Edwina lifted the cup to her lips and took two quick sips.

“You can’t have anything to drink before surgery,” I quickly reminded her.

My comment came too late. The woman who had registered Edwina was standing next to her, in need of further information, and saw her drink from the cup. Within minutes, the message had been communicated to a nurse who marched out to the waiting room to tell Edwina that she wouldn’t be having surgery until Thursday since she’d sipped coffee with cream and sugar.

Edwina began to argue, loudly. She was angry “that woman [had] told on [her]” and insisted that she wouldn’t be coming back on Thursday. I knew that she’d be back; she just couldn’t process the idea of not getting through the procedure after dragging herself–body and soul–all the way to Princeton.

As Tyrone and Edwina’s sister, Clara, went in search of the car to take Edwina back home for the day, Edwina and I took the elevator down one floor and walked slowly towards the hospital entrance to wait.

“I’m just so tired,” she told me. “Them doctors just keep me waiting, this all’s been goin’ on for too long.”

“I know, and I know that you’re hurting,” I told Edwina, rubbing her back and drawing her close. “But you’re gonna get through this, I promise, and I’ll be right here beside you.”

It’s been a long time since I’ve seen Edwina so emotional, so vulnerable to circumstances over which she has no control. We shared a long hug, and I walked towards the parking garage as Edwina climbed into her sister’s car.

I called Edwina earlier this evening. Her surgery has been rescheduled for 10 a.m. tomorrow morning. I told her that I’d meet her in the waiting room at 8.

“Ok,” she replied, her voice shaken by the unexpected delay and knowing that tomorrow she’ll have to make her way back to Princeton, back to the worry and waiting for an answer to her pain.

 

 

 

 

Where should we take you?

Years ago, when I started working with homeless cancer survivors in Birmingham, Rachael Martin, then-associate pastor at Church of the Reconciler, shared something with me that I’ll never forget. She said that when a homeless person needed immediate medical attention and an ambulance driver asked her where to take the individual, she always aimed high.

“They’re more likely to get better care at a place like UAB,” she told me, than at one of the less funded hospitals with fewer well-trained medical personnel on staff in the city. Rachael’s thinking was that even if a person lacking the necessary health benefits couldn’t stay at a more selective facility and had to be moved eventually, the initial triage care would be better and therefore boost the patient’s chances of getting the right diagnosis and initial care–and ultimately, of survival.

Today, a New York Times article reports on a study in PLoS that adds support to Rachael’s logic.  According to the researchers, patients at less credible institutions were “three times more likely to die” and a whopping “13 times more likely to [suffer from] medical complications” than those who were taken to the best facilities. The full article and link to the published study can be found here: http://www.nytimes.com/2016/12/14/business/hospitals-death-rates-quality-vary-widely.html?emc=edit_th_20161216&nl=todaysheadlines&nlid=44005038&_r=0

Maybe those in need of medical attention need to replace “Take me to the hospital” with “Take me to that hospital.” Unfortunately, for many of the least advantaged in our society, the question “Where should we take you?” is never asked.

Mad Science

Today’s New York Times reports on risks arising from an approach for addressing cancer that’s been considered one of the most promising therapies in decades: immunotherapy.

http://www.nytimes.com/2016/12/03/health/immunotherapy-cancer.html?emc=edit_th_20161204&nl=todaysheadlines&nlid=44005038&_r=0

When I attended the Annual Meeting of the American Association for Cancer Research a few years ago, reports on the remarkable results of immunotherapy studies were everywhere. That same year, the publication Science named immunotherapy the most promising cancer advancement of the year.

While oncologists and cancer researchers are hesitant to use the word “cure,” more than one expert referred to immunotherapy as the closest to such an outcome they’d seen. While the treatment was (and continues to be) exceedingly expensive, and thus accessible only to a few, researchers had discovered that the immune system “remembers” what cancerous cells look like. As a result, the system responds to uncontrolled cancer replication and the tricky ways in which cancer cells mutate to stay ahead of therapies before the changes happen.

Now, though, the potential drawbacks to the science behind immunotherapy are becoming evident. Tampering with the immune system to make it resistant to whatever ill might come its way can also cause it to attack healthy cells and systems.

As I read the article in the NYT, the phrase “mad science” came to mind. When a finding seems too good to be true, sometimes it is–it just takes time to discover the downside to progress.

I’m hoping that researchers will figure out how to retain the promises of immunotherapy while avoiding the detriments.

The Alabama Project at Loyola

Gradually, I’m settling back into Alabama time and writing about the amazing experiences I had this summer in Poland and back in Illinois. One highlight was the trip to the Cardinal Bernardin Cancer Center at Loyola University’s Medical Center to deliver some of The Alabama Project photos and to present background on the project during a reception there. The pictures that follow taken by my friend, Tanya, provide a glimpse at the exhibit and speaking engagement.

 

IMG_0065

Me pictured with the women at Loyola who brought The Alabama Project to cancer survivors in Chicago.

 

IMG_0032

An announcement of the photo exhibit alongside David’s picture of Debbie Tabb and her family. Attendees were also provided with copies of Cancer Today containing stories about some of the Alabama women.

IMG_0021

A look at the lobby where The Alabama Project photos were displayed.

IMG_0041

My presentation about the amazing stories behind David’s images.

IMG_0075

Pictured alongside my family, including Mom (seated), my Auntie Rose, Uncle Tom, and Dad (left to right, standing).

IMG_0077

Smiling alongside my gal pals, Tanya (who transported us to Chicago and played photographer) and Suzanne (van co-driver who accompanied me and the pics all the way from Birmingham).

 

IMG_0074

Mom, Dad, and me enjoying a happy moment at Loyola–much happier than Mom’s emergency hospital visit that took us there earlier this year.