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.

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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.

 

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.

 

 

 

 

My 2nd Act on New Focus Network

The documentary series focusing on My 2nd Act productions in different cities is soon to hit New Focus Network, which will carry the stories of female cancer survivors into viewers’ homes.

According to the following announcement, the Birmingham show in which I participated will follow the debut in the series focusing on women in the Raleigh, North Carolina production.

Let’s go, ladies!

https://t.e2ma.net/message/bm57db/76ytd5

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.

My 2nd Act hits Birmingham

Check out local television coverage of My 2nd Act, a stage show about cancer survivorship that hit the stage in Birmingham this past Sunday.

http://abc3340.com/news/local/ten-cancer-survivors-telling-their-story-one-city-at-a-time

The show offered an emotional mix of voices and I bonded with some remarkable women, from ages 14 to 72. A televised program featuring the show and the backstories of local survivors will be hitting the air in the months to come. Stay tuned for more!