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[personal profile] gansje
A few things are on my mind right now, so it must be time for an LJ post, right?

First and most importantly, my dear friend J made it through her sixth cycle of chemo to shrink her tumor, and so she just had her mastectomy Wednesday morning. Other friends and I have been helping out as much as possible with cooking, taking her to chemo, cleaning, etc., so on the day before Memorial Day, Lawrence and I made enough chilled salmon, kale lime ceasar salad and dill sauce to feed a small army, Adam and I bought tiramisu and a loaf of bread, and then we all brought it to her for a holiday celebration at her home. She had another friend there, as well as her son and her son's friend, so we all enjoyed each other's company. At one point in the evening, she and I were talking and she confessed she'd fallen the day before and probably broken a rib so she was worried her oncology team would delay her mastectomy.  And on that Thursday, she'd had a frightening EKG result too, and there was a possibility she'd need to be taken off of Herceptin (which has some cardiac side effects). Other monoclonal antibodies have similar side effect profiles, so this is not a great development, to say the least.

The whole scenario is terrifying for her, perhaps more so than it might be for someone who prior to diagnosis knew little about cancer treatment and options. She told me she is just overwhelmed, spent, done. She keeps treating her cancer for her family, but she's so very tired and doesn't want to continue at all. It's completely understandable; she's been through so much from the side effects of chemo and from working a stressful job throughout treatment.  But J is ordinarily so uniquely able to find a silver lining for every moment of life. I'd expect such a sentiment from myself or anyone else, but to hear her say she's spent and would give up if she felt she could is... hard.  I understand intimately and deeply based on where I was twelve years ago. To know she is as frightened, exhausted and terrified of medical intervention as I was then fills me with a sadness I can't quite convey or address. I love her a great deal and it hurts very much that she's suffering to this extent.  When we talked I just listened and held her hand and told her I understood, she is perfectly entitled to feel everything she's feeling, and whenever she feels that way she should call me and I'll listen and if she wants me to, I'll find something to lift her spirits. But I felt then and still feel a pain for her I can't possibly tell her about, or anyone for that matter, not only because it's wrong to share anything with J but comfort and anything else she asks me to share, but also because it's beyond me to do so. What I am experiencing is more a sensation, color and shape -- a kind of dark, chill hollow, really -- than an emotion to which I can attach words and in so doing adequately describe it.  If there were anything isolatable about how I am feeling about it, I would have to say I'm feeling helpless, I suppose, because there is nothing I can do to make her pain and fear go away.  Lately, I'm finding that there are a great many things I can't fix and make better, which, I suppose, is our lot in life to discover.

Also in the (much less upsetting) category of "things I cannot make better," a former professor and old friend just published a paper that is very interesting, and, at least in terms of conclusions and implications, stunningly inaccurate.  So she posted a short National Geographic piece about her article:

Reading it, I was thrilled for her until I got to the last two paragraphs, in which the anchor author (not her, but some other muckety muck) is quoted:

What the bone showed was that at least one Neanderthal suffered from a fibrous dysplasia, a benign tumor characterized by areas of abnormal growth in one or several bones.

"Most cancers affect people when they get older," says Frayer. "And most Neanderthals and earlier populations died before they got old. So this was really exciting to see."

Oh dear. This contains two inaccuracies. I mean, the first is visible right there in the two paragraphs, no need for prior knowledge about fibrous dysplasia.  Fibrous dysplasia is not a cancer. But that could have been a misattribution -- it's not as if National Geographic is a very... um... credible scientific publication, shall we say.  It's well known as sensationalist. It's sort of like the "People Magazine" of scientific inquiry. Plus, Janet wouldn't have let something like that slip into her paper. She's more on the ball than that. She'd study a disease well if she discovered it in a sample, and then report on it accurately. Right? Right?

So I looked up the actual paper, here:

I was disturbed to read the conclusions section, which does contain the second, main inaccuracy I was concerned about -- age of onset.  Fibrous dysplasia is not just not a cancer; it's also not a disease of old age. Average age of onset is somewhere in the first decade of life with progression across adolescence. The fact that the disease was found in a rib that matched up with an adult rib implies that the disease was present in an adult, which is notable for the fact that this adult must have lived in some severe pain since childhood, since fibrous dysplasia is painful. This in turn could have some implications for understanding how Neanderthals managed illness, since there is a higher likelihood that this lesion came from an individual with multiple lesions across the body than an individual with just one lesion site. If this is so, then lesions were likely also to be in the individual's facial bones, femur, tibia, humerus and/or spine. Of course Janet can't speculate on the likelihood that this individual had more physically challenging lesions than just one localized to the rib, lacking the evidence of a complete skeleton. That would be terrible science right there.

But the whole argument that this specimen's value lies in its rarity due to lack of pollution as an etiology (cause) and the fact that one doesn't usually find older specimens... well.  Wrong on both counts. First, fibrous dysplasia not a disease of old age, and progression as extensive as the disease present in the sample can certainly happen by mid-to-late adolescence ( Second, no one knows what the etiology of fibrous dysplasia is. There's no evidence that shows that a congenital mutation associated (but not fully correlated) with the bone lesions is caused by pollution. None. Zip.

It's clear from the article that Janet did some good research on the disease state. How could she have missed these two points? Did the anchor author throw his weight around and insist that the conclusion section reads as it does, reflecting the stupidity he displayed in the interview he gave to National Geographic? Did he write the conclusions section and send it off for review without Janet's final edit and sign off? That's possible. J. (my friend with breast cancer, above, not Janet) wrote the conclusions section to the paper we just wrote together (abstract accepted at ASCO, and damned if I can remember what journal we submitted the article to, oops -- but it was accepted first submission!) because I didn't have time to write the whole thing and it made the most sense for her to do it.

I don't know why I'm bothered by this, other than I'm quite fond of Janet. When I was working on my PhD, I sometimes had to bring Adam with me to the museum where we had most of our classes, and when I did, Janet would often come to my rescue, snuggle him up, and take him with her to her lab to "play with her old bones." It's a wonder the kid has no interest in paleoanthropology, honestly.  I guess I'm a little embarrassed for her, and feeling disappointment in general that my paleoanthropology kin aren't so great at scientific rigor. It brings back some feelings that some of my physical anthropology education was a sham; I used to get very up in arms about the teleological phrasing used to describe evolutionary processes, and even more upset that after making this point I was on my professor's shit list, and this could have contributed to the nasty inter-departmental politics that deprived me of my PhD a few years later.  Actually, what I think it really might be is anger over losing out on my PhD to political games with people who make stunning mistakes like this. Also, I'm upset that these mistakes happen within a larger context of, for want of a better term, "complete nincompoopery." I mean, that paper made it through peer review and NO ONE CAUGHT THAT EFFING ERROR. Really guys?  Really?

So I guess shooting Janet a little email to point out the error and arm her against any evil academic onslaught would be hurtful and just awful, given the source of my upset, given how proud she is, and given what a lovely person she is. Right? But in all honesty, when I examine my feelings more closely, I do feel very badly for her personally and want to help her out somehow. Maybe nothing will come of it, and that will be good. Just, ugh. Oh, Janet, eek. Maybe I could send her a helmet and a flak jacket?  Maybe I'm the only one who'll give a shit. I mean, there are any number of stunning inaccuracies in the paleoanthropological and physical anthropology literature and we've all been living with them for any number of years, watching them build on each other to the point where the whole field is a teeming garbage heap of WTF.  Like basing the creation of a new genus or species designation based upon a single bone that is slightly morphically different from one already assigned to another genus or species. Many people, myself included, would argue there's no cause for creating a new genus or species designation based on a minor difference like this, as the different shape or size could represent normal variation within a species. This is just one example of the bad science that peppers physical anthropology as a field.

Besides, honestly, it doesn't matter. Paleoanthropology doesn't inform modern medicine, help us create new technologies in general or isolate genetic illnesses in order to treat them. As a field it's just neat and fun, and its main contribution to mankind is getting kids really into science at an age where they've discovered they hate going to school. There's nothing important riding on accuracy and rigor in this field at all, so I'm going to keep my big mouth shut, put aside my latent anger at losing out on an academic career to idiots like this Frayer person, and wish Janet very well.

AND. Speaking of idiots, one other bothersome thing happened this week. My colleague Kevin and I wrote a paper for a pharmaceutical company (Otsuka) focusing on differences by ethnicity ("cultural" differences, sigh) in preference for long-acting injectable atypical antipsychotics for schizophrenia. We honestly didn't expect to find anything based on the sample size (only 20 people with schizophrenia by ethnic group, insufficient stratification of sampling, insufficient designation of ethnicity, leading to poor attribution of ethnicity... and generally I don't like equating American government-designated ethnicity with attitudinal orientation for a whole host of reasons both anthropological and ethical). However, I found that "Hispanics" (I hate that word, jeez) were less likely than any other ethnic group to conceive of schizophrenia symptoms as interrelated and evidence of a single disease. They focused much more on addressing each symptom as a separate entity treatable with separate drugs. Consequently, it made less sense to them to accept a single shot for the treatment of a bunch of different problems. This disease conceptualization lines up nicely with Janis Jenkins's work on "Nervios" as a culture-bound illness in Mexican-Americans.

Everyone who read the paper was all excited and intrigued, and I got a call from the secretary of one Steven Potkin, PhD, who wants to "work with" me now. Great, but dude's field is the neurobiology of schizophrenia, and while I certainly get why he's interested in linguistics generally, and maybe sociolinguistics some, why should he want to collaborate on this sort of thing?  A "cultural" analysis of disease conceptualization and resultant treatment decision isn't exactly the man's field of expertise, exactly.  Still, this was very exciting until it wasn't.  Dude didn't want to work together with Kevin and me. Instead, what he wanted was to present our work at a scientific conference as Otsuka's representative.  Well, no problem. I returned his call, left a message, he never called back, and then to Kevin's any my surprise, he called us, furious, because he had PRESENTED THE PAPER AS HIS OWN and was ill-prepared to answer questions about it.  Fucking asshole.  It's one thing to represent the company's work.  It's another to tell everyone it's your own! And come on, really, is it believable that this guy would out of the blue write a paper on a topic so very far outside his well-established area of expertise?  Really?

Lots of academic asshattery going on lately. Ick.

In better news, being married to L is wonderful, Jo and Hen are adorable and doing very well, and our employers continue to be happy with us.  I had two interviews for another firm where the state-side business model is work-from-home, being that they're based in the UK. I would like this very much. We'll see where that goes.  Another dear friend just got a wonderful job, BFF started seeing someone extremely lovely (though it's yet to be discovered if this one can spell -- not one of the losers she dated for forever could), and Adam made honor roll again and thinks he did okay on the SAT's (and is also adorable, though he would not like me sharing that with you). So, a happy ending to a long and bitchy post.

Date: 2013-06-08 11:21 pm (UTC)
From: [identity profile]
I liked this post!

Date: 2013-06-09 12:54 am (UTC)
From: [identity profile]
I'm so glad! Did you catch MY error? I already fixed it. Typo! :D

Date: 2013-06-09 08:18 pm (UTC)
From: [identity profile]
Error? I've been way too brain dead to see errors lately! :P

Date: 2013-06-09 01:54 am (UTC)
From: [identity profile]
Is physical anthropology as a whole field screwy, or is it just the Ivy League? My Mr H used to be Mr A, for Archaeologist, and his colleagues always seemed pretty laid back--but that might be because they were from a cow college, not an Ivy.

About the cancer/dysplasia issue--there seemed to be some slippage in the terms "cancer" and "tumor" with my mom's neurosurgeon. I wonder if that is typical in all discussions of tumors.

As for that other thing, misrepresentation of your work as his own--holy shit. The organizers of that conference ought to be made aware of that. That's as bad as falsifying data in a journal article.

The chemo thing sounds familiar from my mom's and my sister's experiences. My sister was being treated for hepatitis, but it sounded like it was a pretty similar experience to cancer treatment. It was scary to hear them saying they were not going to take the drugs anymore--even if they didn't mean it.

Glad other things are in place and promising. Fingers crossed on the work-from-home job.

Date: 2013-06-11 04:17 am (UTC)
From: [identity profile]
Honestly, I think it's the whole field of physical anthropology! For the record, I've never experienced this kind of lack of rigor among archaeologists, but Mr. H may have a different take on it.

That's a good point about term slippage. There is a definite association between the word "tumor" and the word "cancer," even though not every tumor is cancerous and not every cancer manifests in tumor form (like multiple myeloma, for example). Also, in a very, very few cases of fibrous dysplasia, a tumor can become malignant (but it's totally unclear from the state of the bone whether it had become a malignant tumor). So I can certainly understand how someone could think, "cancer," right after hearing the word, "tumor," but you really need to be careful about making that association if you're publishing on it.

I am so sorry to hear about your mom's cancer and your sister's hepatitis. From what I understand, treatment for hepatitis is horrible and it goes for nearly a year. I can really understand her saying she wanted to stop taking the pills and shots, ugh. How is she doing?


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