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.

No, Cosmo, No!

Cosmopolitan magazine screwed up big time. The publication sent out a tweet on Monday touting cancer as a route to weight loss.

Here’s a response from The Washington Post, a rant that I’d far rather draw attention to than the misguided message in Cosmo: https://www.washingtonpost.com/news/morning-mix/wp/2017/04/12/dear-cosmopolitan-magazine-cancer-is-not-a-diet-plan/?utm_term=.c4b2155779e2

As someone who’s experienced breast cancer twice in the last 24 years, I guarantee that enduring a grueling treatment regimen and looking one’s best don’t go hand in hand.

Tips from a cancer survivor and mom

I came across an amazing article in Working Mother from a mom with terminal cancer: http://www.msn.com/en-us/lifestyle/whats-hot/a-note-to-my-fellow-working-moms-as-i-near-the-end-of-my-life/ar-BBzLxej?li=BBnb4R7

Rachel Huff shares the choices she’s made now that her doctors tell her that she is nearing the end of her life. Rather than embarking on a trip across the ocean or retiring early to take it easy, Huff says that she is relishing in the everyday joys of her life. The people she sees and tasks she completes at work. Opportunities to drive her kids to school and activities. Time to sit and sip a cup of tea. A day without debilitating pain.

Huff’s words made me pause and think about all that I have to be thankful for: a beautiful family, a job I love, a place to lay my head at night, and all the little extras that fill my days that I too often take for granted.

 

Heroin in the heartland

A story about drug abuse and overdoses in the heartland appeared in The New York Times on a day when I was visiting my parents in Illinois. Our family–and our family’s farm–has been affected for decades by my brother’s addiction to alcohol and drugs, so the story resonated with me:  https://www.nytimes.com/2017/03/12/us/opioid-epidemic-rural-farm.html?emc=edit_th_20170313&nl=todaysheadlines&nlid=44005038&_r=0

In the small farming community where I grew up, drugs were everywhere. And my brother, Joe, found them, at age 13.

I still remember the first time I saw my brother high. My parents were out of town and my grandmother was staying with us. We drove to town on a Friday night to pick up Joe from a movie with friends. Instead, Joe had spent the evening with other friends a few blocks away and was standing on the corner waiting for us when we pulled up. He was weaving back and forth, bending over, shaking his head of long 70s hair back and forth, I assume in an attempt to shake off the fuzzy feeling in his head. It was the beginning of a very long relationship between my brother and the drugs of choice that would continue to tempt him over the years.

Like most farmers’ sons, Joe was the assumed heir to the farming life. Dad, who’s a fourth-generation farmer, always figured that Joe would follow in his footsteps and I would work alongside my brother–likely from afar. But one mistake followed another–arrests for drugs and theft, foggy judgments that resulted in fights and plenty of embarrassment in our small town, increasingly clouded thinking and a habit of lying–until my dad, like Roger Winemiller, the Midwestern farmer featured in the NYT piece, lost trust in my brother to do the right thing. When something as precious as your life’s work is at stake, you can’t risk entrusting it to an addict. Even if he’s your son.

A special lunch

This morning, my 15-year-old daughter, Helena, and I headed to Grace Episcopal Church in the neighborhood of Woodlawn to serve lunch to people from the area. Woodlawn is one of the poorer parts of Birmingham, and the majority of people who walked through the door were either homeless or living in substandard conditions. Surrounding the church are dilapidated buildings, many like the houses in Edwina’s previous neighborhood. They are the kinds of homes and abandoned buildings that likely provide a bit of shelter at the same time they threaten the lives of those dwelling within. Many are standing in mid-crumble.

My cousin Tim, who grew up just a few miles from me and also lives in Birmingham, had invited Helena and me to join him and others for cooking and serving. His church had committed to help out and he wanted to make sure there were enough hands on deck to feed the 100+ people who showed up.

While I’ve volunteered many times with people in Birmingham who are homeless, the experience was a new one for Helena. During the past several years, Helena and Celia have gotten to know Edwina and have visited Church of the Reconciler where homeless folks from across the city come to worship, get warm (or cool, during the summer months), and fill their empty stomachs. But they’ve not interacted with people in quite the way we did today–greeting people, mostly men, when they walked into the church hall; seating them at tables and serving them restaurant-style; and most importantly, engaging in conversation.

Before the doors opened, Tim reminded all of us volunteering that our job was “not to make ourselves feel good about helping out the less fortunate,” but rather to “make our guests feel welcome and cared about.”

So often, those who live on the streets are made to feel invisible. Unseen. Uncared for. Unimportant. All of the “un’s” imaginable. Today was about making people know that they do matter. They are seen.

Helena benefited from the experience and thought that some of the people she talked with enjoyed themselves. She knows they liked the food. I hope she’ll want to go back again one of these days.

One hope I have for both of my girls is that they will seek out opportunities to see all people as they deserve to be seen.

 

 

 

Good news

After a two-day delay, Edwina underwent surgery on Thursday. When we headed back to pre-op, the doctor who would perform the surgery gave us good news: The biopsy he’d sent off the week before had come back negative. No cancer! The worry in Edwina’s eyes immediately started to fade.

I called Edwina yesterday, as she was preparing to go home. While she was thrilled to be getting out of the hospital and to settle back into a familiar, far cozier environment, she knew she’d have some challenges when she got there.

Tyrone’s son would still be hanging out.

Her son, Steve, and his girlfriend would be running in and out.

Joe-Joe, Edwina’s brother, would be crashing on the couch some nights.

She’d still have a big bill to pay before she could get her car back in working order.

Edwina wasn’t sure how much food would be left in her refrigerator by the time she walked in the door of her apartment, or what kind of mess she’d find.

While it beats sleeping in a hospital, home isn’t always a worry-free zone.

 

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.