Author Topic: The Immortal Life of Henrietta Lacks by Rebecca Skloot ~ Oct Book Club Online  (Read 37462 times)

BarbStAubrey

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The Book Club Online is the oldest  book club on the Internet, begun in 1996, open to everyone.  We offer cordial discussions of one book a month,  24/7 and  enjoy the company of readers from all over the world.  Everyone is welcome.

October Book Club Online

The Immortal Life of Henrietta Lacks
by Rebecca Skloot

"There's a photo on my wall of a woman I've never met, its left corner torn and patched together with tape.   She looks straight into the camera and smiles, hands on hips, dress suit neatly pressed, lips painted deep red.  It's the late l940s and she hasn't yet reached the age of thirty.  Her light brown skin is smooth, her eyes still young and  playful, oblivious to the tumor growing inside her-a tumor that would leave her five children motherless and change the future of medicine." -Rebecca Skloot

http://www.nytimes.com/2010/02/07/books/review/Margonelli-t.html?pagewanted=all&_r=0

http://www.biography.com/people/henrietta-lacks-21366671

http://www.lacksfamily.net/

         Part One: LIFE  Oct. 1-8
       Part Two: DEATH  Oct 9-21
       Part Three: IMMORTALITY
           Chapters 23-31 Oct 22-31
           Chapters31-38, Afterward Nov 1-4

Discussion Leaders: Ella, Adoannie, PatH 
“A man should hear a little music, read a little poetry, and see a fine picture every day of his life, in order that worldly cares may not obliterate the sense of the beautiful which God has implanted in the human soul.” ~ Goethe

BarbStAubrey

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It appears women in Puerto Rico are having similar experiences of disrespect by the medical field as Henrietta

https://waragainstallpuertoricans.com/2016/08/30/puerto-ricans-are-being-used-as-medical-guinea-pigs-again/
“A man should hear a little music, read a little poetry, and see a fine picture every day of his life, in order that worldly cares may not obliterate the sense of the beautiful which God has implanted in the human soul.” ~ Goethe

PatH

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Barb, thanks for saving the heading for me.  That's a disturbing article.  I'd like to see the scientific part of the trial more fully described; there are inconsistencies that tell me I don't actually know what they really did.  But whatever, it sounds like something they wouldn't dare do closer to home.

There is a crucial difference between this and the Lacks story.  The Hopkins doctors treated the Lacks family badly, didn't tell them what was going on, never tried to get them compensation for the HeLa cells, etc..  BUT: they never did anything to harm Henrietta medically.  She got the best treatment they knew how to give.  The horrible things they did to her were the standard treatment at the time, and while they didn't save her, they were her only chance for a cure.  They didn't do anything extra for their own purposes except take a tissue sample, which they did anyway for a biopsy.  This wouldn't have been harmful--just like an oversize Pap smear.

It's crossing a big, big, unacceptable line to subject patients to harm for an experiment.

PatH

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An example of how doctors didn't take patients' observations seriously: when Henrietta went to Hopkins to be diagnosed, she told Dr. Jones there was "a lump on the neck of her womb".  He wrote I do not quite know what she means by this, unless she actually palpated this area."  Well, of course she had, but it didn't occur to Jones that a woman would be familiar enough with her own body to do that.  And the lump was just where she said it was.

bellamarie

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It seems the Lacks family was beginning to trust people, accepting the invitation to attend the pg 219 -220 "conference of the official naming of Henrietta Lacks Day, she (Deborah) was ecstatic: finally, a scientist was honoring her mother. Soon the Lacks family__ Day, Sonny, Lawrence, Deborah, Bobbette, Zakariyya, and Deborah's grandson Davon__piled into an RV that Pattillo rented for them and drove to Atlanta, with the BBC film crew following behind."

pg. 220 "They gonna have a lot of doctors there talking on different subjects and different areas of the science field."  she said,  "And they're gonna hand out plaques to my brother and father and me in honor of our mother name.  So I know it's gonna be a great occasion."

pg.  221  "It seemed like things were going better for the Lackses, like Henrietta would finally begin getting the recognition Deborah so hoped for.

I was excited for the Lacks family at this point, The Turner Station Heritage Committee was founded in Turner Station, Barbara Wyche wrote letters to Congress and the mayor's office demanding recognition of Henrietta's contribution to science, the Lacks visited the Smithsonian National Museum of American History where they had a flask of HeLa in storage not on display and Deborah even asked about cloning her mother back to life with the DNA cells and her own eggs.  Tee shirts were being made up, pens, and a $7 million museum was being talked about, and a Henrietta Lacks Foundation bank account was opened, they began to collect as much money and information as they could for the museum.  One of their first goals was getting a life-sized was Henrietta statue. July 4, 1997, Representative Robert Ehrlich Jr. spoke to Congress, "Mr. Speaker, I rise today to pay tribute to Henrietta Lacks."

Then it's all downhill from here....

pg. 223 "When she found out that the Speed and Wyche had started a foundation and bank account in her mother's name, Deborah was furious.  "The family don't need no museum, and they definitely don't need no wax Henrietta," she said.  "If anybody collecting money for anything, it should be Henrietta children collecting money for going to the doctor."

Sir Lord Keenan Kester Cofield the con artist, BBC hounding Deborah for more photos of Henrietta and asking about how she died, Hopkins pulled out of commemorating Henrietta, the Tuner Station foundation was getting piles of letter from the courts as was Deborah from the Cofield suit filed, and the only light at the end of the tunnel was, pg. 229 She also met with Kidwell, who told her not to worry and promised that Hopkins would fight Cofield. 

Deborah pg. 230 began reading and rereading the full details of her mother's death in her medical records.  And for the first time, she learned that her sister had been committed to a mental institution called Crownsville.  Deborah called Crownsville for a copy of Elsie's records, but an administrator said most of Crownsville's documents from before 1955, the year Elsie died, had been destroyed.  Deborah immediately suspected that Crownsville was hiding information about her sister, just as she still believed Hopkins was hiding information about Henrietta.  Within hours of her call to Crownsville, Deborah became disoriented and had trouble breathing.  Then she broke out in hives__red welts covering her face, neck, and body, even the soles of her fee.  When she checked herself into a hospital saying, "Everything going on with my mother and sister is making my nerves break down,"  her doctor said her blood pressure was so high she'd nearly had a stroke.

I felt drained just reading these chapters. 

“What on earth could be more luxurious than a sofa, a book, and a cup of coffee?...Was ever anything so civil?”
__Anthony Trollope, The Warden

bellamarie

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PatH., we were posting at the same time. 

At the time I did not feel Henrietta's attending doctor did anything wrong other than misdiagnose her, and did not listen to what she was saying.  A woman knows her body better than anyone else, no matter how much education doctors have gained. 

The wrong and injustices that were done, was once the tissue was removed, they did not have her written consent to use it for science research.  The autopsy was inhumane, and denied Henrietta the dignity and respect of her dead body.  The entire medical/science hospital/ people, took advantage of a poor, black, uneducated family.  Laws were not in place then, as they are now.  For me... it does not take a law on the books to expect human decency, and to respect a person/body when they are alive or dead.  As much as Henrietta's cells have improved the quality of life, and saved lives, they could have accomplished the same results without putting her and her family through the torture they did. 

I think Wyche's letter to William Brody, then president of John Hopkins says it best:

pg. 224    "The [Lacks] family has suffered greatly...This family is, like so many others today, attempting to grapple with the many question and the moral and ethical issues that surround the "birth" of HeLa, and the "death" of Mrs. Lacks...The questions of (1) whether or not permission was received from the "donor" or her family for either the "use" of HeLa worldwide or the "mass"," and commercial, production, distribution, and marketing of Mrs. Lack's cells... (2) whether or not scientists, universities and government personnel and others have acted ethically in these two areas or in their interactions with the family... Other social issues also arise because Mrs. Lacks was an African American.

With all due respect to science, and admiration of the people who go into the research field, I have to admonish the lack of human feelings and respect they showed in Henrietta's case, and many others, in their quest to find cures.  Makes me wonder if their accomplishments would be as fruitful, if they did indeed allow these factors to enter into the equation of their work.  While I have NO doubt these people have great love of life, and are mothers, fathers, daughter, sons etc., they seemed to forget the people/bodies they are taking from for their research, are indeed someone else's family member.  I, just like the Lacks family, will grapple with the moral and ethical issues, long after we finish this book.......

   
“What on earth could be more luxurious than a sofa, a book, and a cup of coffee?...Was ever anything so civil?”
__Anthony Trollope, The Warden

PatH

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Bellamarie:
Quote
Makes me wonder if their accomplishments would be as fruitful, if they did indeed allow these factors to enter into the equation of their work.
I'm guessing the accomplishments would be even more fruitful.  People treating patients have to damp down their feelings somewhat, otherwise what they see tears them apart, and they can't cope.  But that doesn't mean they have to abandon humanity.  Anyone who ignores the humanity of others and themselves isn't thinking straight, and it's bound to impact what they do.

PatH

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The Hippocratic Oath is mentioned a lot.  Mostly it isn't used any more; you'll see why if you read it.  It's kind of out of date.  Here's a link to the actual words.  In the menu bar on the left, you can also get to a modern version, and the Nuremberg Code, and some other stuff.

http://guides.library.jhu.edu/c.php?g=202502&p=1335752

ANNIE

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The chapter I have enjoyed the most is "All That's My Mother" which was so pleasing to read.  Lots of good reporting by the author tells us about Christoph Lengauer and his pleasant way with Deborah and Zakariyya, showing them the HELA cells first in the storage freezers and Deborah and Zakariyya's amazement about the number of cells that they were staring at: his glee filled smile when Deborah talked of the HELA cell contamination that happened in Russia.  He took the time to explain how the contamination problem happened.  When he finished, he said,"Her cells caused millions of dollars in damage.  Seems like a bit of poetic justice, doesn't it?"  Deborah says her mother was just getting back at scientists for keepin all them secrets from the family!  You don't mess with Henrietta--she'll sic HELA on your ass!"  And everyone laughed, even I had to chuckle!  Deborah was really loosening up and enjoying all the attention that Lengsuer is giving  her and her brother.  And then he grabs a tiny vial of HELA cells
and  "held it out to Deborah, his eyes soft. She stood stunned for a moment, staring into his outstretched hand, then grabbed the vial and began rubbing it fast between her palms, like she was warming herself in winter.     "She's cold," said Deborah, cupping her hands and blowing onto the vial. Christoph motioned us To follow him to the incubator where he warmed the cells, but Deborah didn't move.  As Zakariyya and Christoph walked away, she touched it to her lips.  "Your're famous," she whispered. "Just nobody knows it."

Now comes several vignettes of the brother, sister and the author being told by Christoph what culture medium was and how he moved cells from freezer to incubator to grow.  How the cells
grew to fill gallon size jugs and how they do their experiments.  He explained how drugs go through testing in cells, then animals, and finally humans.

Sorry but the WORLD SERIES IS ON!!! and I will finish this tomorrow!!!  I really loved Christoph's
whole enthusiasm about showing them the cells using a screen and a microscope.  They were so pretty, according to Deborah.  Later folks!  I have to keep the Cubs up and running AND WINNING!!!😍😍😍


"No distance of place or lapse of time can lessen the friendship of those who are thoroughly persuaded of each other's worth." Robert Southey

ANNIE

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😢😢😢Well, they will do better tonight!

Back to the book and Christoph' s sharing Henrietta's cells! When he magnifies them on the screen, Deborah reaches out and touches the screen, rubbing her finger from from one cell to the next.
 "Then Christoph grabs a piece of scrap paper and spends nearly a half hour drawing diagrams and explaining the basic the basic biology of cells as Deborah asked questions.  Zakariyya turned up his hearing aid and leaned close to Christoph and the paper."

Didn't you feel as if you were right there!  Christoph was so excited as he told them about DNA
and chromosomes. And they were amazed!  Well this whole chapter just made me feel good about the book!  But chapter 33 depressed me and Barbara's link was absolutely frightening!!! I had to stop reading both and put the book down while I gathered myself together. So I am still reading 33 but will finish it and the rest of the first half of part 3 today.  It will have my complete attention
as our author tells us more about the Lack's family and the scientists that were involved.
"No distance of place or lapse of time can lessen the friendship of those who are thoroughly persuaded of each other's worth." Robert Southey

PatH

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Annie, the schedule we posted broke part 3 right after chapter 31, so you're already two chapters ahead.  However, there are only you, me, Bellamarie, and Barb left.  If everyone's ready to move on, can start adding chapters now.  What does anyone want?

ANNIE

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Sorry I jumped ahead but this author has done such a good job, I can't stop reading!  😀  So I am just reading your link, PatH. And the last half of chapter 32!  There is so much in 32 and I didn't cover all of it but will at least get it read today!

So we can all start on 31 or 32 today?

A friend dropped by this week and is now going to read our book.  She has her Masters degree in biology and explained the DNA and chromasones to me. And we also discussed National Geographic's DNA article.  I gave my copy to Ella two weeks ago so I will send my friend,Ellen, a link to that also.  She agreed with me about how scary that article is.
"No distance of place or lapse of time can lessen the friendship of those who are thoroughly persuaded of each other's worth." Robert Southey

bellamarie

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PatH., and Annie, I am more than ready to move on.  Just let me know if we are reading to finish the rest of the book, or are we stopping somewhere.   Ooops just saw ch 32 - 38, so I will read those chapters. 
“What on earth could be more luxurious than a sofa, a book, and a cup of coffee?...Was ever anything so civil?”
__Anthony Trollope, The Warden

ANNIE

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PatH, I haven't been able to open the Hippocratic Oath on your link. I click on link to the library and then on the oath but it doesn't open. Any suggestions?
"No distance of place or lapse of time can lessen the friendship of those who are thoroughly persuaded of each other's worth." Robert Southey

PatH

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The link opens directly to a page that has the oath on it, with no further clicking.  What do you see when you open it?

PatH

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Here's the text in Wikipedia, but I liked the other link better.

https://en.wikipedia.org/wiki/Hippocratic_Oath

ANNIE

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Pat, when i use your link, I get a library listing of what the library has available
but click on the listings does take me anywhere. 
"No distance of place or lapse of time can lessen the friendship of those who are thoroughly persuaded of each other's worth." Robert Southey

PatH

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That's weird.  I get a page with a listing on the left, but you can select any of the topics and get it.  I copied the Hippocratic Oath'


"DO NO HARM"
The well-known phrase "first, do no harm" is not in the Hippocratic Oath.

The context of the phrase comes from The History of Epidemics, which is part of the Hippocratic corpus:

"...But in those cases in which there was no danger, and where a concoction was made in proper time, it should be considered whether the translations of humours were good or critical signs. Concoctions always portend a crisis, and safety from the disease; but crudities, or inconcoctions are soon converted into bad translations, or a defect or want of crisis, or pain, or a duration of the disease, or death, or a relapse. What will happen from these should be considered from other circumstances, as to know what is past, to discern what is present, and to predict the future. And these two things in disease are particularly to be attended to, to do good, and not to do harm. The whole art of medicine may be circumscribed in three distinctions, medicine, the sick-man, and the physician who is the minister of the art; and the conflict lies between the sick-person, the physician, and the disease."

2. HIPPOCRATIC OATH
I swear by Apollo Physician and Asclepius and Hygieia and Panaceia and all the gods and goddesses, making them my witnesses, that I will fulfil according to my ability and judgment this oath and this covenant:

To hold him who has taught me this art as equal to my parents and to live my life in partnership with him, and if he is in need of money to give him a share of mine, and to regard his offspring as equal to my brothers in male lineage and to teach them this art - if they desire to learn it - without fee and covenant; to give a share of precepts and oral instruction and all the other learning to my sons and to the sons of him who has instructed me and to pupils who have signed the covenant and have taken an oath according to the medical law, but no one else.

I will apply dietetic measures for the benefit of the sick according to my ability and judgment; I will keep them from harm and injustice.

I will neither give a deadly drug to anybody who asked for it, nor will I make a suggestion to this effect. Similarly I will not give to a woman an abortive remedy. In purity and holiness I will guard my life and my art.

I will not use the knife, not even on sufferers from stone, but will withdraw in favor of such men as are engaged in this work.

Whatever houses I may visit, I will come for the benefit of the sick, remaining free of all intentional injustice, of all mischief and in particular of sexual relations with both female and male persons, be they free or slaves.

What I may see or hear in the course of the treatment or even outside of the treatment in regard to the life of men, which on no account one must spread abroad, I will keep to myself, holding such things shameful to be spoken about.

If I fulfil this oath and do not violate it, may it be granted to me to enjoy life and art, being honored with fame among all men for all time to come; if I transgress it and swear falsely, may the opposite of all this be my lot.

Translation from the Greek by Ludwig Edelstein. From The Hippocratic Oath: Text, Translation, and Interpretation, by Ludwig Edelstein. Baltimore: The Johns Hopkins Press, 1943.

PatH

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Here's the Nuremberg Code:

To some extent the Nuremberg Code has been superseded by the Declaration of Helsinki as a guide for human experimentation. The full text and more information about this code and its context can be found in the Encyclopedia of Bioethics.

The voluntary consent of the human subject is absolutely essential. This means that the person involved should have legal capacity to give consent; should be situated as to be able to exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, over-reaching, or other ulterior form of constraint or coercion, and should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him to make an understanding and enlightened decision. This latter element requires that before the acceptance of an affirmative decision by the experimental subject there should be made known to him the nature, duration, and purpose of the experiment; the method and means by which it is to be conducted; all inconveniences and hazards reasonably to be expected; and the effects upon his health or person which may possibly come from his participation in the experiment.

The duty and responsibility for ascertaining the quality of the consent rests upon each individual who initiates, directs or engages in the experiment. It is a personal duty and responsibility which may not be delegated to another with impunity.

The experiment should be such as to yield fruitful results for the good of society, unprocurable by other methods or means of study, and not random and unnecessary in nature.

The experiment should be so designed and based on the results of animal experimentation and a knowledge of the natural history of the disease or other problem under study that the anticipated results will justify the performance of the experiment.

The experiment should be so conducted as to avoid all unnecessary physical and mental suffering and injury.

No experiment should be conducted where there is an a priori reason to believe that death or disabling injury will occur; except, perhaps, in those experiments where the experimental physicians also serve as subjects.

The degree of risk to be taken should never exceed that determined by the humanitarian importance of the problem to be solved by the experiment.

Proper preparations should be made and adequate facilities provided to protect the experimental subject against even remote possibilities of injury disability or death.

The experiment should be conducted only by scientifically qualified persons. The highest degree of skill and care should be required through all stages of the experiment of those who conduct or engage in the experiment.

During the course of the experiment the human subject should be at liberty to bring the experiment to an end if he has reached the physical or mental state where continuation of the experiment seems to him to be impossible.

During the course of the experiment the scientist in charge must be prepared to terminate the experiment at any stage, if he has probable cause to believe, in the exercise of the good faith, superior skill and careful judgement required by him that a continuation of the experiment is likely to result in injury, disability, or death to the experimental subject.

PatH

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Here's a modern oath sometimes used:

HIPPOCRATIC OATH, MODERN VERSION
I swear to fulfill, to the best of my ability and judgment, this covenant:


I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.

I will apply, for the benefit of the sick, all measures which are required, avoiding those twin traps of overtreatment and therapeutic nihilism.

I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.

I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.

I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.

I will prevent disease whenever I can, for prevention is preferable to cure.

I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.

If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.

Written in 1964 by Louis Lasagna, Academic Dean of the School of Medicine at Tufts University, and used in many medical schools today.

PatH

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Credit from the link:
The Hippocratic Oath and the Ethics of Medicine
Use/adaption of this page with permission of Tim Ruggles of Dalhousie University.

ANNIE

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Pat, So now I see what I did!  Good grief, so sorry! Do we want to go back and discuss Chapter 23 through Chapter 31? I have read the whole book!😢😢. I think my mind is fried. 
I just finished reading what you put up and decided that if any of these oaths and codes were strictly followed, we would not experiment using human beings EVER!!!! Think of the prescription drugs that are given to us today and the RXes that are advertised on TV and in magazines!  If you read side effects, you want to not take them!  Even if it helps relieve your pain or whatever you have.
I know that many of these drugs can make a big difference in one's quality of life but sometimes they just don't work. And then Dr's try something else,with good intentions, and it doesn't work either so now the patient feels as they are on a merry-go-round of trying first one and then another.
I wonder if scientists or Dr's  could just check our blood work to see what drugs we could take?  The article I read in N.G. does speak of testing a newborn's ?????? which tells them what meds that baby's body will tolerate but only in seven genres???

Let me know if you want to discuss ch.23-31? And what about extra information after Ch.32 which is the end of the book?

Barbara, I had a hard time with story in your link. Like PatH, I would like to know more about what or how the experiments evolved?  Were consent forms asked for?  Was money offered? It certainly makes one want to know.  Have you read the extra info after the Ch.38?

"No distance of place or lapse of time can lessen the friendship of those who are thoroughly persuaded of each other's worth." Robert Southey

bellamarie

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Annie,
Quote
Let me know if you want to discuss ch.23-31? And what about extra information after Ch.32 which is the end of the book?

I am confused, we have been discussing ch 23 -31 and are now going on to 32 - 38.  Ch 38 The Long Road to Clover is the actual last chapter, then there is, Where They Are Now, Afterward and Acknowledgement. I think we should definitely discuss the sections after ch 38 to complete the discussion.  I have just begun ch 32, I had a very busy weekend.  So while we move on, how about we just touch any points in the previous chapters anyone wants to discuss.  Sound good?  Do we have a time frame when we need to end this discussion?  I know we were hoping for the end of October, but it was a lot to digest and read all at one time.  Just let me know, but I will read 32 - 38 ASAP.   
“What on earth could be more luxurious than a sofa, a book, and a cup of coffee?...Was ever anything so civil?”
__Anthony Trollope, The Warden

PatH

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Yes, we're now going on to the rest of the book; read as much as you want, but let's talk mostly about 32-34 at first, then add on 35-38.  Yes, we need to discuss the sections after 38.  Let's hold off on them until we're mostly done with the numbered chapters.  There isn't a need to end at any particular time.  At the moment it's listed as Nov. 4, but we can go for whatever we like.

ANNIE

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Bella, I agree we should read after Ch 38. There is lots of pertinent info in that part of the book. And we can take our time.
"No distance of place or lapse of time can lessen the friendship of those who are thoroughly persuaded of each other's worth." Robert Southey

bellamarie

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Thanks PatH., and Annie for responding.  I finished the book today, believe it or not in the waiting room of my doctor's office.  I knew they make you wait so brought it along.  I was discussing it with my doctor who is probably in his mid to late 30's when he noticed the book.  He actually knew a little about the HeLa cells once I was telling him about the book.  So much to think about now that I am done.  I'll start off fresh in the morning since I am coming down off the high being with my grandkids trick or treating tonight, and also waiting for my antibiotic to work on my two ear infections, upper respiratory infection, along with sore throat.  I know I should have stayed home, but the kids were way to excited for Nonnie & Papa to share in their fun night, so I will rest a lot tomorrow. 
“What on earth could be more luxurious than a sofa, a book, and a cup of coffee?...Was ever anything so civil?”
__Anthony Trollope, The Warden

ANNIE

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Re: The Immortal Life of Henrietta Lacks by Rebecca Skloot ~ Oct Book Club Online
« Reply #226 on: November 01, 2016, 12:12:13 PM »
I don't know how to say this.
 
I got a call from Ella's daughter this morning and Ella passed away in the middle of the night.  Please keep her daughter, Cindy, in your prayers as Ella was all she had. Thankfully she has many friends here who will give her much support and comfort.

I am finished with the book and I don't want to discuss it anymore.  Ella was one my best friends here in Columbus and I am just in shock.  Please excuse me.
"No distance of place or lapse of time can lessen the friendship of those who are thoroughly persuaded of each other's worth." Robert Southey

bellamarie

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Re: The Immortal Life of Henrietta Lacks by Rebecca Skloot ~ Oct Book Club Online
« Reply #227 on: November 01, 2016, 12:27:20 PM »
Chapter 32 "All That's My Mother",  I can see this being one of everyone's favorite chapters in the book.  Deborah and Rebecca made some great strides in finally getting Zakariyya to come with them to John Hopkins to view their mother's cells.  Christoph showed such compassion to them, and mentioning how he agrees with the unfairness of how the family has been treated all these years.  That went a long way with Deborah and Zakariyya.  I enjoyed reading where Christoph took so much time with them, to show them how to use the microscope, teaching them what they were looking at, the DNA, cell division and for them to actually see it happen at the very time they were viewing the cells.  That was almost magical or inspired with thinking Henrietta herself was able to make that happen right before their eyes.  They learned a lot that day, and I especially like how Zakariyya got involved and asked,

"If those our mother's cells," he said, "how come they ain't black even though she was black?"  "Under the microscope, cells don't have a color," Christoph told him.  "They all look the same__they're clear until we put color on them with a dye.  You can't tell what color a person is from their cells."

This chapter was a feel good moment for Deborah and her brother.  Christoph validated Zakariyya's feelings of being angry.

"Zakariyya has a lot of anger with all this that's been going on," she told Christoph.  "I been trying to keep him calm.  Sometimes he explode, but he's trying."  "I don't blame you for being angry," Christoph said.

The Lacks family has gone through so much since the death of their mother, and the immortal cells, and for someone at John Hopkins to just simply take the time with them, and agree there were injustices done to the family was huge.  Zakariyya left I think a better calmer man,

 "As we walked toward the elevator, Zakariyya reached up and touched Christoph on the back and said thank you.  Outside, he did the same to me, then turned to catch the bus home.  Deborah and I stood in silence, watching him walk away.  Then she put her arm around me and said, "Girl, you just witnessed a miracle."

In Chapter 33 The Hospital for the Negro Insane, yet again they come across someone who is willing to be helpful, when Deborah and Rebecca visit the records dept at Crownsville.  Paul Lurz, went over and beyond what was necessary in assisting Deborah in finding Elsie's files, believed to have been destroyed.  This chapter was bittersweet, and also for me heart wrenching.  It finally could give Deborah closer to Elsie's time at the hospital, and death, but also it caused her so much emotional stress dealing with what she now knows. 

"At one point, Deborah climbed from her car looking near tears.  "I been havin a hard time keepin my eyes on the road," she said.  "I just keep lookin at the picture of my sister."  She'd been driving with both of Elsie's pictures on the passenger seat beside her, staring at them as she drove.  "I can't get all these thoughts outta my head.  I just keep thinkin about what she must've gone through in those years before she died."

It did not surprise me when in the next chapter Deborah is showing symptoms of this all affecting her emotionally, mentally, physically and medically, as she and Rebecca get back to the hotel room and begin going through all the information in the medical records.  Even Deborah's trust level of Rebecca is being challenged at this point.  It's like all the answers Deborah has wished for, longed for, prayed for are finally before her own eyes, yet she begins to realize how valuable these facts are and suspects Rebecca will break their trust for her own personal/financial gain.  Ughhh.... that was rough reading this:

""You're lying!" she yelled again.  She jumped off the bed and stood over me, pointing a finger in my face.  "If you're not lying, why did you smile?"  She stared frantically stuffing papers into her canvas bags as I tried to explain myself and talk her down.  Suddenly she threw the bag on the bed and rushed toward me.  Her hand hit my chest hard as she slammed me against the wall, knocking me breathless, my head smacking the plaster.  "Who you working for?" she snapped.  "John Hopkin?"  "What?  No!"  I yelled, gasping for breath.  "You know I work for myself."  "Who sent you?  Who's paying you?" she yelled, her hand still holding me against the wall.  "Who paid for this room?"  "We've been through this!"  I said.  "Remember?  Credit cards?  Student loans?" 

The next morning walking down the lobby for breakfast,  Deborah says to Rebecca,  "We're okay, Boo."

Phew.....  Rebecca sure put herself in some risky situations to get this story told.

“What on earth could be more luxurious than a sofa, a book, and a cup of coffee?...Was ever anything so civil?”
__Anthony Trollope, The Warden

bellamarie

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Re: The Immortal Life of Henrietta Lacks by Rebecca Skloot ~ Oct Book Club Online
« Reply #228 on: November 01, 2016, 12:29:35 PM »
Oh my heavens Annie, I just hit post and saw your post.  My heart breaks to hear about Ella.  It is unbelievable she has passed on.  I have always enjoyed my discussions with her, she actually was one of the first members to welcome me, and was always so kind.  I remember years ago she and you were going to try to make a day trip to Perrysburg Ohio, so the three of us could meet each other in person, and then she fell on the ice and we had to postpone it.  I will keep you and her daughter in my prayers. 
“What on earth could be more luxurious than a sofa, a book, and a cup of coffee?...Was ever anything so civil?”
__Anthony Trollope, The Warden

PatH

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Re: The Immortal Life of Henrietta Lacks by Rebecca Skloot ~ Oct Book Club Online
« Reply #229 on: November 01, 2016, 12:34:40 PM »
Bellamarie, that leaves just you, me, and Barb.  Let's take a day off before finishing.

Question: I see a hidden villain in the book.  Do you?

bellamarie

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Re: The Immortal Life of Henrietta Lacks by Rebecca Skloot ~ Oct Book Club Online
« Reply #230 on: November 01, 2016, 12:41:32 PM »
PatH.,  I appreciate taking a day off, in memory of our dear member Ella.     :'(
“What on earth could be more luxurious than a sofa, a book, and a cup of coffee?...Was ever anything so civil?”
__Anthony Trollope, The Warden

PatH

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Re: The Immortal Life of Henrietta Lacks by Rebecca Skloot ~ Oct Book Club Online
« Reply #231 on: November 01, 2016, 12:42:07 PM »
I never met Ella in person, but we've been good internet friends for at least 10 years.  She figuratively held my hand when I became a DL and led my first discussion, and we've worked together a lot since.  It's strange how good a friendship you can have with someone you've never seen.

Although this is a shock, it isn't a surprise.  Ella knew she didn't have much time left, and had made her peace with that, but we thought we had a little more time.

BarbStAubrey

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Re: The Immortal Life of Henrietta Lacks by Rebecca Skloot ~ Oct Book Club Online
« Reply #232 on: November 01, 2016, 01:04:02 PM »
Pat I am wrestling with this news - the circumstance is like last year when my best friend of 45 years had a fall and hung on for 6 weeks then passed - my brain is whirling and I still cannot land - I used to scrub floors when I was in this kind of tether but getting up and down is not like when I was even in my 60s - I need to veg - probably a few longer walks - I'll continue to post the Sonnets but I think I will call it a day here - sorry Pat but my brain is not functioning and thank goodness I have the headings for the next week of Sonnets in the can.
“A man should hear a little music, read a little poetry, and see a fine picture every day of his life, in order that worldly cares may not obliterate the sense of the beautiful which God has implanted in the human soul.” ~ Goethe

bellamarie

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Re: The Immortal Life of Henrietta Lacks by Rebecca Skloot ~ Oct Book Club Online
« Reply #233 on: November 04, 2016, 11:44:58 AM »
It seems we have all lost our enthusiasm to finish discussing this book with the loss of our dear Ella, who was our discussion leader.  PatH., I know Annie has said she is not going to return.  I feel we owe it to Ella to at least give an ending to this discussion, so I would like to try to summarize the last chapters.

Deborah has finally gotten all the answers she was searching for where her mother and sister Elsie are concerned.  She has the medical records and autopsy reports.  She has visited both John Hopkins hospital and Crownsville.  She is having a lot of physical, mental and emotional distress with this information, and is barely sleeping.  She and Rebecca are going through endless nights of searching through the information, and Deborah is making her wishes known on what she will and will not agree on what Rebecca is to use in the book.  She wants to honor the memory of her mother and sister.  Deborah was to speak at a conference in Washington D.C. on the September 11 terrorists attacks, which means it was cancelled.  Five days later she is at church and has a stroke.  She recovered from the stroke, but then died on Mother's Day of 2009.  Rebecca sat remembering her times with Deborah: 

Sitting between me and Davon on the bed, Deborah nodded at her younger self on the screen and said, "Heaven looks just like Clover, Virginia.  My mother and I always loved it down there more than anywhere else in the world."  She stroked Davon's hair, "I don't know how I'm going to go,"  she said.  "I just hope it's nice and calm.  But I tell you one thing, I don't want to be immortal if it mean living forever, cause then everybody else just die and get old in front of you while you stay the same, and that's just sad."  Then she smiled.  "But maybe I'll come back as some HeLa cells like my mother, that way we can do good together out there in the world."  She paused and nodded again.  "I think I'd like that."

When I think of all I learned in this book I can't even begin to say I comprehend it all.  I find myself talking to my friends and family about this book and they look at me in wonderment.  I know they realize what I am saying is huge, but because they did not read the book, get to become attached to the family members, and see the force Deborah had in her search with Rebecca, they can't understand the magnitude of this book, and how it affects modern day medical research.  I personally think about how Henrietta's HeLa cells may have helped doctors know the treatment of my Hepatitis A, I contracted when I was only eighteen years old, working in a fast food restaurant, just weeks before my wedding day. 

As Henrietta's HeLa cells are immortal, so will be our memories of our dear Ella, who chose this book not knowing it would be her last one with our group.  This book was sad, yet held so much knowledge, and so it is fitting we will be ending this discussion on a sad note with the death our Ella, but will always be grateful for all the knowledge she shared with us throughout her years with our bookclub.  R.I.P.......Henrietta Lacks, Deborah Lacks, and Ella Gibbons.......

Thank you Annie, PatH., and Ella for leading this book discussion.  And many thanks to Rebecca Skloot, for telling this story.
“What on earth could be more luxurious than a sofa, a book, and a cup of coffee?...Was ever anything so civil?”
__Anthony Trollope, The Warden

BarbStAubrey

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Re: The Immortal Life of Henrietta Lacks by Rebecca Skloot ~ Oct Book Club Online
« Reply #234 on: November 04, 2016, 12:57:18 PM »
Your summation was nice to read Bellamarie - thanks for wraping it up - yes, the stuffings went out with Ella passing - Ginny had the perfect word to describe Ella - she sparkled - her book choices were always a wonderful challenge and this one was especially so.

I am remembering the book we read about the Mary Anning in Britain who gathered her beach finds and she and her mother sold the fossils  - she never received the recognition and other's took credit for her scientific understanding - at least she sold her finds where as for Henrietta there were no sales however, both women received no recognition till these many years after their death when a book is written describing their important value to the understanding of the scientific community.
“A man should hear a little music, read a little poetry, and see a fine picture every day of his life, in order that worldly cares may not obliterate the sense of the beautiful which God has implanted in the human soul.” ~ Goethe

bellamarie

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Re: The Immortal Life of Henrietta Lacks by Rebecca Skloot ~ Oct Book Club Online
« Reply #235 on: November 05, 2016, 11:59:08 AM »
Ella's passing may have lit a "spark" in me.  I bought a beautiful  vintage writer's desk yesterday at a Grand Opening of Baycreek & Co. a small vintage boutique, in a very small rural town just minutes from me. I plan to begin my book I have always wanted to write.   No time like the present!!!   
“What on earth could be more luxurious than a sofa, a book, and a cup of coffee?...Was ever anything so civil?”
__Anthony Trollope, The Warden

PatH

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Re: The Immortal Life of Henrietta Lacks by Rebecca Skloot ~ Oct Book Club Online
« Reply #236 on: November 05, 2016, 12:03:58 PM »
Good for you, Bellamarie.

PatH

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Re: The Immortal Life of Henrietta Lacks by Rebecca Skloot ~ Oct Book Club Online
« Reply #237 on: November 05, 2016, 02:45:39 PM »
Bellamarie, thanks for that good summary of Deborah's journey of discovery, coming to terms with her mother's story, and finding a certain amount of peace.

I'll just mention a few other issues in the last part.  If anyone wants to talk more, we can, or we can consider this a winding up.

Rebecca Skloot traveled a long way too.  A young white woman, she had to earn the confidence of a family who had been very badly treated, both by individuals and an uncaring system.  Jewish, not very religious, she ate pork with them, watched a sort of exorcism, read the Bible, and spoke up in Church, coming to understand what they were feeling.  She watched Deborah wrestle with her demons, became fond of the whole family, and was devastated when Deborah died.

Deborah never saw the book, though it had been finished about the time she died.

PatH

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Re: The Immortal Life of Henrietta Lacks by Rebecca Skloot ~ Oct Book Club Online
« Reply #238 on: November 05, 2016, 02:54:21 PM »
Although the family didn't seem to blame him, I blame Henrietta's husband Day for his behavior after her death.  If he hadn't let the children be raised by such an abusive woman, they might have been much better off.  Zakariyya might not have had so many anger issues, and Deborah might have had the experience of a loving stepmother to give her the emotional strength to cope with her mother's story.

PatH

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Re: The Immortal Life of Henrietta Lacks by Rebecca Skloot ~ Oct Book Club Online
« Reply #239 on: November 05, 2016, 02:57:53 PM »
The Afterword describes the current situation with regard to consent and compensation in using someone's tissues--still sort of a mess.  speculating on what would be a fair system, it's not easy to come up with an answer.