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I’ve been reading books and academic papers on bioethics and biopolitics for years, so you could say I was fairly prepared to handle the story behind the HeLa cell line – one of the most famous and controversial cell lines in the history of biomedical research. But Henrietta’s story, as written by Rebecca Skloot is saturated with something the other, more theorical works, do not delve into: human emotions. Specifically, the emotions of Henrietta’s daughter, Deborah.

The author puts us inside Deborah’s mind as she grapples with what has happened in the sixty plus years since her mother’s illness and death. In some ways, Skloot’s account comes very close to a patient narrative. It’s a risky move because the actual patient has been dead for sixty years, and who knows what Henrietta would say of all that has come from her harvested cancer cells?

But the risk pays off for Skloot – she gives us a patient-centered narrative even as we wade through the science chronicle. The polio vaccine was developed, HPV virus was classified into more than 100 strands and a vaccine distributed globally, cancer cells’ resistance to drugs has and continues to be tested…we’ve gained priceless knowledge, and prominent careers have been built on HeLa cells. But someone did pay a price.

If we’re human, we all become patients at some point, so Henrietta’s story is for everyone. People who work in medical industry should pay special attention. Those of us who were already in medical industry before HIPAA, might not be shocked by the Lacks family’s isolation and lack of informed consent. Still, it’s baffling to read how they were treated over the years.

I know that not everyone who works in medical research these days knows about Henrietta Lacks, but everyone who does should. If I were the one doing the research (as opposed to writing about the research others are doing), I suppose I might be expected to detach human emotion and human history from my scientific work. However, as long as HeLa cells live, we will all have a just reminder that we can take the cells out of the human, but we can never take the human out of the cells. We all want to find a cure for disease. Perhaps the road will be easier when we all understand that scientific research and the human spirit are inseparable.

P.S.: After spending time reading and writing papers about the novel Woman in Battle Dress, about the 19th century struggles of Dr. Henriette Faber, I could not help but smile about the similar first names. Maybe the two actual women shared the same resilience across time.

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I read my famous paper about cross-dressing, transnational women at a conference in Boca Raton. It went great. A professor from UPR-Cayey came up to comment on the fact that even Mayra Santos Febres’ Sirena Selena crosses national as well as gender borders. (Sirena Selena es dominicano residente en Puerto Rico.)

Still, there’s something unresolved. Something that means a lot to me on a personal level. All four historical texts I used portray the women heroes (heroine is a drug) as making a tough choice between living their lives or mothering. Henriette the doctor loses an infant. Jeanne the botanist gives up two children. Ann the pirate gave up a child. And Loreta Janeta, the confederate soldier, first loses three children and later stops the narrative when she has a live birth. Had a kid, it must be the end of the story.

I’m wondering whether anything has changed in the past 200 years: women still seem to be making the same tough choices. Then I found a ray of hope: Mireya Mayor, Ph.D., the cheerleader turned anthropologist. She is also a mother, something the legendary women who stepped into male spaces never had a chance to juggle. (This is a disturbing side of the historical accounts. It’s uplifting to read about women who fought alongside warriors and others who participated in expeditions, but then you read that they had to abandon children, or that they only went on an adventure because their children died, and it becomes depressing.)

Enter Mireya, a Cuban-American (of course, three of the historical women also have links to Cuba) who has a husband, two daughters and twins on the way. She’s attractive, intelligent, adventurous and entrepreneurial. Seems like the answer to the alter-latinas from 200 years ago. See her web site http://mireyamayor.com/

Last Tuesday was my day to become a patient. Given the amount of time I spend writing about “the patient experience,” it’s to my benefit to put myself in the shoes of a patient every now and then. It was my time for this familiar-yet-strange ritual.

I was ushered from one desk to the next, in an effort to gather vital and all-too-private medical information (protected by HIPAA, but still shouted across the room). Then I was issued an ugly rag with velcro at each shoulder for easy disrobing. As is the case in Montessori schools (not coincidentally founded by a physician), you are given a false sense of self-determination by a tech who asks you what color robe and what size you’d like. I, being experienced at this sort of mind games, quickly refuse her kind suggestion of a coral color and choose a faded pink that I know will fit better and keep me warm. After a quick change, I sit in the cold waiting area and try to numb myself by checking junk e-mails on my portable, and ironically, smart device.  

A tall, attractive woman who looks to be about my age shouts my name and then leads me to the torture chamber, ahem, mammogram room. Yes, I am here in this fascinating place of Science and Logic to partake in an absurd middle age female rite of passage called Mammogram. Only I’ve been doing this since I was a young woman of 20, thanks to an overactive body that turns stress into little pebbles and stores them in funny places.  

As a younger woman with dense breasts (“You’re not dense, your breasts are,” says the nice technician on this occasion) I’ve already been subjected to every available and often unnecessary diagnostic procedure, including surgical biopsy.  The nice tech proceeds to mark my scars with little sticky strips that look like zippers. Then it’s on to the torture machine. She very kindly tries to fit (read, accommodate, push) my body as close as possible to the hard plates of the machine that will soon drop about 40 lbs of force on my squished pecs. She is really nice about it. I try to lighten things up by telling her that some day they will come up with a better way of doing this. I’m not sure who “they” are. The same geniuses who invented the current torture machine? I remember the article I read about an 18th century woman describing a mastectomy without anesthesia. Surely this is nothing compared to that. But why are we still stuck with the torture machine? Do you know how fast those nameless geniuses would have come up with another method if the men had to have their private parts flattened by a machine?   

I laugh to myself when the nice tech tech tells me to breathe out while I’m being compressed – there’s no way exhale, all you can do is hold a small breath until the machine releases. I grin and bear it and soon I’m whisked away to another room to wait for them to call me back for an ultrasound. (They are very efficient in this place and do everything in one visit.) I always need an ultrasound because dense breasts  don’t really show well on an x-ray.

An ultrasound is like a trip to the spa after a mammogram – they even warm up the gel before they place the conductor on my body. However, this being a place of Science and Logic, there’s no way to skip a step and go straight to the more soothing and efficient procedure, bypassing the painful torture machine. This would upset the Revenue Cycle. It’s the same argument I’ve had with medical professionals many times over the past 20 years. Other than digital mammography (which is about the same thing for a patient, but makes lots of money for machine makers), there has been little progress in diagnosing breast cancer, while all the research money goes to late-stage drug development – where the real money is.

In between tests, I sit in the waiting room in pain. I can’t do anything with my left arm, so at first I don’t even try to hold up my smart device for the mind-numbing activity of checking my junk e-mail. I sit for a few minutes and try hard not to cry. It hurts that bad, I realize now that I’ve allowed myself to breathe. I remember seeing the number 90 in a digital display at the top of the machine while the nice tech was taking pictures of my left side. The machine was turned at a 90 degree angle to get a better view of a suspicious marble, so my left pectoral muscle was compressed down and then sideways – no wonder it hurts like hell all the way to my armpit. I can’t think about this now, so I manage to pick up the mind-numbing device and open the junk e-mail. One of my RSS feeds actually has something interesting. It’s a list by Time magazine of History’s Most Rebellious Women.  You know it’s His-tory and not Her-story because Time magazine’s equivalent list for accomplished men is called Person of the Year (formerly Man of the Year).  Would men’s accomplishments seem peripheral if labeled rebellious? More important, why aren’t more men seen as rebellious (without being thrown in jail)?  

I’m thinking of all the ways in which I could get on this rebellious women list. Some noble, some vicious. Right now, I’d like to make a ton of money and give it to Dr. Deborah Rhodes to develop a new mammogram machine that doesn’t cause women to feel physically tortured, and that actually gives accurate answers to women with dense breasts.  As you will see in this TED video, some Science and Logic guardians have no interest in seeing this happen.

As for me, I made it through with a clean bill of health. After further digging, I found out that Dr. Rhodes does have a diagnostic clinical trial right now. It’s for women with a history of breast cancer, a group in which I’m fortunate not to have a membership at the moment.