Week 15 Journal: The Beginning of The End

"When Deborah got to her doctor's office, her blood pressure and blood sugar were so high, her doctor was amazed she hadn't had a stroke or heart attack while we were in CLover. With levels like hers, he said, she could still have one any minute. Suddenly her strange behavior on the trip seemed less strange. Confusion, panic, and incoherent speech are all symptoms of extremely high blood pressure and blood sugar, which can lead to heart attack and stroke. So is redness and swelling, which would explain why her red welts didn't go away, despite all the Benadryl she drank. (p. 297)"

I chose this passage because it's a piece of medical information about Deborah, showing how the research about her mother's cells had taken such an awful toll on her, stressing her out to the point where she was a hair's breadth from a major medical catastrophe. All this just to know more about her mother--in the scene before this, her cousin Gary is praying and singing and preaching over her to help her release the "burden" of the stress it was causing her to find out more about her mother. It shows how much she loved her mother, how concerned for her mother's posthumous wellbeing and dignity she was, and how ignorance of medicine is dangerous for people--it gives them room to make up wild and frightening stories about what might be happening behind the scrubs and the white lab coats--making it obvious to me that informed consent and transparency in medicine are absolutely necessary to the healthcare process, just as much as the actual treatments, preventive advice, and procedures performed might be.
The questions that this passage raised for me are: How would this have been different with an upper-middle-class white family in the North who were not particularly religious? Would it have made a difference if Deborah had been given more information and had not experienced the dismissive, mystery-perpetuating treatment she had been given by the medical professionals she had encountered in her search for information about her mother, and in her own visits to her doctor. I also want to know what would have happened if Deborah was being treated for her anxiety during the time when she and Rebecca were doing their research--would she have learned more? Would her behavior have been less erratic, even though her blood pressure and blood sugar were so far out of the normal range?


"Every decade has had its landmark moments in HeLa research, and the connection between HPV and cervical cancer was only one of several in the eighties. At the beginning of the AIDS epidemic, a group of researchers--including a molecular biologist named Richard Axel, who would go on to win a Nobel Prize--infected HeLa cells with HIV. Normally, HIV can infect only blood cells, but Axel had inserted a specific DNA sequence from a blood cell into HeLa cells, which made it possible for HIV to infect them as well. This allowed scientists to determine what was required for HIV to infect a cell--an important step toward understanding the virus, and potentially stopping it. (p. 214)"

When I read this passage, I immediately felt like there was a huge amount of good that has been done by the discoveries HeLa cells have facilitated. I think what drew me to it most, though, was the idea that there was the possibility that all of this research could have *not* ben done; it was like seeing a world without the advances in medical knowledge in my mind's eye. My stomach sank a little after reading it. If my thoughts on informed consent had been law (i.e., that all people should know exactly what's being done to and for them at all times, and be able to refuse treatment or refuse to give tissue samples if they want to) at the time the cells were taken, Henrietta Lacks could have refused to have cells harvested from her tumor, and the world would be significantly different now.
My questions regarding this passage are: What if Henrietta Lacks had refused to donate her cells for research? Claire mentioned this in an earlier discussion board this week, and it's something I've been thinking a lot about too--specifically after having read this passage in the book. Also: what if Day had been less prone to cheating on his wife, and had not brought home the HPV strain that infected Henrietta and eventually led to her cancer and her tumor and her death? What would medicine have done without sacrificing one innocent life for the good of millions of others? Is that really the balance that has been struck? And does that mean that each of us has an equal probability of being called on by forces outside our control or understanding to sacrifice ourselves for the benefit of humanity at large??

Femme Apologizes to Faulkner Even As She Posts This Sentence

As she absently mixed the filling for the pumpkin pie, she shifted her weight from one foot to the other, preoccupied with the party she was throwing in the evening--stirring, stirring, the wooden spoon making circles in the batter's latte-colored, liquidy mass, until she finally realized she had been repeating the same motion, eyes glazed and unseeing, fixated on the 1970’s vintage clock across the kitchen in her grandmother’s house (the ugliest clock she had ever seen in her life—why had someone chosen to use lime green and tan for rosmaling colors?); she jerked herself out of her reverie, swapped the wooden spoon for a spatula, and held the mixing bowl with one hand over her target, and she scraped out the ginger-and-cinnamon-smelling goo (why did her pie crust never come out like her grandmother’s, even though she used the same recipe?), then licked the spatula, remembering how her grandmother used to let her do it when she helped with the Thanksgiving pies as a child (the smells of the kitchen, and even washing dishes afterward—the soap making swiss-cheese holes in the oily residue inside the pans—were memories she treasured even as she knew how she had resisted helping Nana in the kitchen at the start, squirming out of Mom’s grasp, and trying to run outside with the boy cousins, but eventually getting scooped up and replaced in the fragrant, bustling warmth of bubbling gravy, steaming pies, and a massive bird roasting in the oven—was it the joy of cooking or just Stockholm Syndrome that kept her there year after year, once she had learned to love the smells and the activity of the busy kitchen on Thanksgiving?), and this time, she fixed her gaze out the window, listening for the sounds of the snowfall which was swirling little white specks all over the brown leaves and grass on the ground, and she marveled at the silence of it all, knowing how in just a couple of short hours, there would be a sea of relatives coming through the door, bringing in wet boots and noisy coats and small mittens drying on the Victorian-era radiators; it seemed so idyllic, and she was grateful to have inherited both the house and the hideous clock after all, even with the layer of sadness lying like dust over everything in the house (she had cleaned everything vigorously, at least three or four times, but it was still there), and also despite the new inconvenience of the light rail, which would invariably have a train going by when she needed to cross Hiawatha, but what did that matter when she had a home which had been the epicenter of the family’s warmth and happiness together for 80 years?

Henrietta Lacks and the 10 Plagues On Clover

Henrietta Lacks seemed to be a tiny person with a gale-force personality which could never be minimized or ignored, even in death.  She was a spiritual presence even while alive, and after her death, she only got better at spreading her influence.  Here are my answers to some questions from the official Immortal Life of Henrietta Lacks website, per Mr. Maltman:

Who was Alexis Carrel? Contrast his approach to science and tissue culture with George Gey’s.
Alexis Carrel was a French researcher who had cultured a chicken heart, which he thought would be immortal (like HeLa), but which eventually died (Skloot, 58, 61).  He was also a man who believed that some people are born with more or less intrinsic worth than others--he wanted to use cell culture and genetic research to facilitate the creation of a master-race-type genealogical line, and he devoted a lot of his research to finding out how he could do that (Skloot, 59, 60, 61).  Scary, weird, and plain evil.  Gey, on the other hand, was thinking of the benefit to society generally when he took the cells from Henrietta Lacks, according to Skloot.  He didn't want to create an Ubermensch; he just wanted to know what would happen if he ever got a culture to grow and divide indefinitely.  He also seemed not to be motivated by potential incomre from his discovery, giving away vials fof HeLa to his colleagues, and hoping that they'd do research with them and give back to the scientific community at large with them.
Cootie seems to know and understand a little bit about HeLa cells, but he believes that Henrietta’s spirit is still present in her cells. What does Cootie think about the reason that HeLa cells were used to develop a polio vaccine?  Where does Cootie think Henrietta’s cancer came from?
Cootie seems to think Henrietta saw his suffering as a result of his infection with Polio, and that she intended her cells to be used to help develop the vaccine because of her empathy toward him and her general kindness and good intent toward others (Skloot, 81).  He intimated that he thought her cancer was a result of a bad spirit wishing ill on Henrietta, or that it might have been created in her by the doctors at Hopkins (Skloot, 82).  According to Skloot, the family and the general population of the primarily-black communities in the South from the time of Henrietta Lacks still believed in Voodoo, and they held the belief that illness could come from being cursed just as much as it could from being exposed to pathogens. 
Describe the progression of Henrietta’s cancer in the eight months between her diagnosis and her death. What was Henrietta’s final request? What does this request tell you about her?
Henrietta's body became riddled with tumors, and her major organs were losing function quickly; she was unable to eliminate, and developed toxemia as a result; she had to have clean blood pumped into her to keep her from being completely poisoned by her own metabolic wastes, and eventually she had made such a dent in Hopkins's blood supplies that they stopped her transfusions (Skloot, 83).  By the time she died, she suffered from extreme cachexia, and by the end, she was put on only palliative care by order of a doctor at Hopkins (Skloot, 84, 85).  Her final request was for Day to care for her children, especially infant Deborah, and to protect them from any harm (Skloot, 85, 86).  Her request reveals her to be a very tender, selfless woman, who even in the throes of excruciating pain and near-madness, wanted to ensure her children's welfare, and chose to charge her husband with their care and security.  She must have been very wise for her few years, and possessed of a very strong maternal instinct, because the children seemed to be her only focus; she never asked for anything for herself.  All she cared about was the fate of her children.  She was noble and selfless and stouthearted, and she couldn't leave the earth without the assurance that her children would not suffer. (Unfortunately, Ethel sort of thumbed her nose at Henrietta's request, and abused and neglected the children for years after Henrietta died).




What happened when the family started to bury Henrietta’s body? Henrietta’s cousin says that Henrietta “was tryin’ to tell us somethin’ with that storm.” What do you think she could have been trying to say?
"As Cliff and Fred lowered Henrietta's coffin into her grave and began coveringit with handfuls of dirt, the sky turned black as strap molasses.  The rain fell thick and fast.  Then came long rumbling thunder, screams from babies, and a blast of wind so strong it tore the metal roof off the barn below the cemetary and sent it flying through the air above Henrietta's grave, its lonf metal slopes flapping like the wings of a giant silver bird.  The wind caused fires that burned tobacco fields.  It ripped trees from the ground, blew power lines out for miles, and tore one Lacks cousin's wooden cabin clear out of the ground, threw him from the living room into his garden, then landed on top of him, killing him instantly (Skloot, 92).  Henrietta must have been trying to say she wasn't done yet--that a part of her still lived and needed to be acknowledged--maybe symbolized by the metal roof--behaving like a living thing, but really only a part of the whole, and unnatural, frightening.  I think she was trying to tell people that her death hadn't been peaceful, that she had been in abject agony for a long time before she was called to her Maker, and that she wouldn't let that be for nothing--no one could forget her.  No one could make her anonymous.  No one in their right mind should underestimate her, either.

TMI and HeLa

"But things weren't all good.  Toward the end of her treatments, Henrietta asked her doctor when she'd be better so she could have another child.  Until that moment, Henrietta didn't know that the treatments had left her infertile.

Warning patients about fertility loss before cancer treatment was standard practice at Hopkins, and something Howard Jones says he and TeLinde did with every patient.  In fact, a year and a half before Henrietta came to Hopkins for treatment, in a paper about hysterectomy, TeLinde wrote :

The psychic effects of hysterectomy, especially on the young, is considerable, and it should not be done without a thorough understanding on the part of the patient [who is] entitled to a simple explanation of the facts [including] loss of reproductive function.... (Skloot, 47)"

1. As I read that passage, images of informed consent lawsuits danced in my head; I felt like I would have been livid if I had not been consulted about my thoughts on potentially being infertile if I went through with a procedure.  I think transparency in medicine is the best possible way to prevent both lawsuits and patient distrust.  People seem not to trust doctors, and I can sort of see why--not everyone understands human physiology and how to diagnose or prescribe treatment for things, or the side effects they'll experience along with the drugs or other therapies they're prescribed.  So, with informed consent laws, I feel like the distrust might be less now than it was before, but I still sort of feel as though there should be even more transparency--maybe a more in-depth explanation to patients of the science behind their therapies, and what to expect on a cellular/molecular level, and how that'll translate into the macro scale to treat their disease or condition, as well as making them feel more informed generally, and therefore more autonomous.  Maybe it's the helplessness of having someone else tell you what to do with your own body; maybe it's the fact that people aren't sure what's happening in them, and thus aren't prepared to deal with it very well, but I think that whatever Henrietta Lacks was experiencing, she must have been frightened, and the doctor was probably just trying to spare her feelings (a potentially rude and condescending way to do it to presume she was n't that bright just because she was poor, black, and uneducated, but still, one can only hope it came from a benign intent).

2. I suppose this raises questions for me, if I really think about it.  I didn't think much about that when I chose this passage, just thinking that it caused a really visceral reaction of outrage and that I was taken aback by how doctors distanced information from patients.  How did they think they were helping in the long run by doing this?  Didn't they think of how the patient would feel to discover that they were infertile, and wouldn't it have been something they would have wanted a chance to mull over beforehand if it were being done to them?  What sort of information would they have given Henrietta Lacks if she had asked them directly what they were doing?  Where would science be if they hadn't acted without her permission?  Does that justify the fact that it was done?


"No one knew what happened between Henrietta and Crazy Joe, except that there were some dates and some kisses.  But Henrietta and Day had been sharing a bedroom since she was four, so what happened next didn't surprise anyone: they started having children together.  Their son Lawrance was born just months after Henrietta's fourteenth birthday; his sister Lucille Elsie Pleasant came along four years later.  They were both born on the floor of the home-house like their father, grandmother, and grandfather before them.

People wouldn't use words like epilepsy, mental retardation, or neurosyphilis to describe Elsie's condition until years later.  To the folks in Lacks Town, she was just simple.  Touched.  She came into the world so fast, Day hadn't even gotten back with the midwife when Elsie shot right out and hit her head on the floor.  Everyone would say maybe that was what left her mind like an infant's (Skloot, 23)."

1. I felt so awful after reading this passage.  It made me think of my father’s brother, Brad, who was born in rural Minnesota (Brainerd—yes, Brainerd—why, God, Brainerd?), to a family which was not inbred like the Lackses, but which wasn’t close to any sort of up-to-date healthcare, especially pediatric.  Uncle Brad was never diagnosed with Down Syndrome, but I’m sure he had it.  It’s the family’s little secret—they mostly just downplayed the things that were wrong with him, acknowledging that he was ‘slow,’ but not getting him any kind of treatment, or putting him in classes which could have helped him acclimate to the world around him, and which could have met him on his level.  As it was, he got left largely to his own devices, without much supervision, or support, from his parents (my grandparents), and he watched unbelievable amounts of television, never developed socially, and fell victim to the alcoholism which runs on my father’s side of the family after my Grandma Elsie (another visceral connection to Henrietta Lacks’s daughter’s story) died in 1999.  He drank constantly, and my grandfather (whose will to live left when his wife died, though he lived another 9 years after) didn’t stop him, so it was only a matter of time before something terrible happened.   I think he got a DWI and was court-ordered to join TeenChallenge, a program for Minnesotan teens (duh) and adults (not so duh—I was surprised to learn this, though I admit I didn’t know much about Teen Challenge to begin with before Uncle Brad had to join) to clean up their acts while receiving on-the-job training for blue-collar work, as well as providing them with housing that is always supervised and kept “clean.”  Uncle Brad, whom I had never liked, got clean, made amends with the family over the years, and was apparently doing well, when he got sick.  He had colon cancer, and was dead within about eight months of diagnosis.  I think that if he had gotten the attention and special-needs services he needed, he could have lived a more happy, functional life, with a lot of structure and without the alcohol.  I think he was primarily a victim of overworked, outnumbered parents (my grandparents had five children, and my grandfather worked three jobs to keep the family fed and clothed, which left my grandmother essentially alone to rear all five children, and care for him as well). 
2. My questions from this passage are: Would Elsie Lacks have been taken better care of at home if the Henrietta and Day had kept her there?  Did she know she was different?  Was her condition congenital as a result of inbreeding, or was it a result of head trauma at birth?

Week 13 Discussion Board #3, part B (page 47 of the book)

"But things weren't all good.  Toward the end of her treatments, Henrietta asked her doctor when she's be better so she could have another child.  Until that moment, Henrietta didn't know that the treatments had left her infertile. 
Warning patients about fertility loss before cancer treatment was standard practice at Hopkins, and something Howard Jones says he and TeLinde did with every patient.  In fact, a year and a half before Henrietta came to Hopkins for treatment, in a paper about hysterectomy, TeLinde wrote:
'The psychic effect of hysterectomy, especially in the young, is considerable, and it should not be done without a thorough understanding on the part of the patient [who is] entitled to a simple explanation of the facts [including] loss of the reproductve function...It is well to present the facts to such an indivisual and give her ample time to digest them...It is far better for her to make her ow adjustent before the operation than to awaken from the anaesthetic and find it a fait accompli.'"
I think there was a lot of both sexism and racism in the 1950's in the South, and I think Henrietta Lacks was seen as less than the keenly intelligent and common-sense-rich person she was.  I think the physicians must have left the fact of the sterilizing effects of hysterectomy out when advising Lacks, either out of oversight or wilful omission of facts that would discourage Lacks from seeking treatment, since she was a poor black woman with five children already. 

My questions for this passage are:
1.) Would history have been drastically different if Lacks had chosen not to pursue surgical treatment for her cancer?
2.) If there had been an informed consent law in the 1950's regarding hysterectomies, would the "appendectomies" referred to in Chapter 6 have happened at all?  Would poor black women be able to own their bodies?  And what if a poor black woman wanted to terminate a pregnancy or voluntarily have a procedure done which would stop her from becoming pregnant again?  Would men tell her no, just to exert their power over her race and class and sex?   Or would they have been understanding of her need for birth control that her husband couldn't circumvent?

Week 13 Discussion Board #4

Prologue: As a high school student, Skloot began researching HeLa cells to find out more about Henrietta Lacks. Examine pages 5 and 6 and write down each step that Skloot took to begin her research. Skloot went first to the index of her Biology text, then to her dictionary, then used her first computer's Internet capabilities to search for Henrietta Lacks, combed magazines like Ebony  and Jet, and calling Directory Assistance in Baltimore, the hometown of the Lacks family, to find David Lacks, going to visit "hospitals, laboratories, and mental institutions," interviewing as many people as she could about Henrietta Lacks's personal life, as well as her contributions to medicine. 


Chapter 4:Based on the descriptions of Gey found on pages 38–39, offer three adjectives that best describe his personality. Adventurous. Manic.  Genius.  I think Gey was desperate to make a discovery that would not only give him fame, but advance medicine far beyond its reaches for the time in which he lived.  He was also innovative when presented by challenge; he did not shy away from risk.  Instead, he plunged headlong into making whatever he needed with his own hands, using whatever materials were available, to custom-build each piece of machinery to best suit his needs.  I think he had an incredible sense of urgency toward his project of growing cells in vitro, and I think he must have lost considerable sleep just trying to make the project better, or thinking of what he'd do with his cells if he ever got any.  I think he also knew that he had ideas beyond what anyone else in his field was even conceiving of at the time, and I think only someone like him could have had the ideas, and executed them as well and as passionately as he did.
 
Choose one chapter and read the notes on it (they start on page 346).    Describe the kind of research Skloot used in order to write the chapter.  How much work went into the making of those pages? Chapter 2: Clover.  Skloot wne to the Virginia Historical Society, looked at the South Boston Library archives, for books about life in the South during the time Henrietta Lacks was growing up (Skloot 348).  She also looked for the history of the town of Turner Station, which was an industry town with written documents about it at the "Dundalk Patapsco Neck Historical Society and the North Point Library in Dundalk, Maryland (Skloot 348)."  Skloot clearly wanted to present an image of Lacks's life in real, tangible terms, warts and all, and she went to heroic lengths to accrue a base of knowledge about the place, time, and people of Henrietta Lacks and her husand and children.

Week 13 Discussion Board #3

"'My nerve broke down,' she said.  'I just couldn't take it. My speech is coming back a little better--I almost had two strokes in two weeks cause of all that stuff with my mother cells.'
Then suddenly she was talking abouther family history, saying somthing about the 'Hospital for Crazy Negroes,' and her mother's grandfather having been a slave owner. 'We all mixed.  And one of my mother sisters converted to Puerto Rican.'
Again and again she said 'I can't take this anymore,' amd 'Who are we supposed to trust now?'  More than anything, she told me, she wanted to learns about her mother and what her cells had done for science.  She said people had been promising her information for decades and never delivering it.  'I'm sick of it,' she said.  'You know what I really want?  I want to know, what did my mother smell like?  For all my life I just don't know anything, not even the little common little things, like shat coor she like?  Did she like to dance?  Did she breastfeed me?  Lord, I'd like to know that.  But nobody ever say nothing.'
SHe laughed and said, 'I tell you one thing--the story's not over yet.  You got your work cut out for you, girl. This thing's crazy enough for three books!'"--p.53, The Immortal Life of Henrietta Lacks. 
So, this passage stood out to me, because there is little mention in science of anthropological detyails about people who have been the subjects of study--more often, we wax biographical about the scientist who does the research than we are about the person whose tissue or behavior or other characteristic is studied.  I think this story is unique, because it makes no pretenses about who Skloot is dealing with--it's not condescending, like "The Help," written in "black" vernacular dialect by a white woman--but Skloot does preserve the realness of the words she hears from people talking about Henrietta Lacks.  Family members are given direct quotes, without any editing, to preserve intent and authenticity, not to mock them or challenge their dignity.  I think there's a little to be said, also, for the fact that Skloot was consumed by passion for this subject--it's apparent in the amount of work she does, that she was consummately invested not only in getting this story out to the public, but to getting the point across to the world--the people who are related to the most important woman in medical history can't afford themselves to see a physician, and they are not recognized as related to someone who turned tissue culture and research on its head, or given royalties from the sale of their own kinswoman's cells, unchanged for fifty years.  It is also a stain on American belief that we live in a post-racist society.  This family has been directly the subject of discrimination and dehumanization because of their skin color and their socioeconomic background, and that's embarrassing, but what will any of we comfortable white people do with that information?  It looks like more of the same thing we've been doing-a sigh, a brief mention of how unfair it is, and then back to business as usual.
This passage raised a couple of questions for me:
1.) What compensation (intellectual property, money, celebrity, recognition, etc) did/will the Lacks family recieve for Henrietta's momentous contribution to medicine?
2.) How did the family warm up to Skloot to finally allow her to ask them questions about Henrietta?
These are the primary questions at the fore of my brain now. More will probably come, as I read more.  I think, as a part of a medical family, that the issue of ethics is the most important one set up for discussion and reflection in this book so far--the sense of unfairness that the Lacks family feels about this situation is beyond justified, and I want to know how the medical community, and especially Johns Hopkins Hospital, is going to address it, and when.