Archive for October 2010

Google Health and UnitedHealth Group   Leave a comment

SOOOO…apparently…after UHG signed on for a pilot of google health……they ended up creating their own “free” EHR hosting website that also offers information on diseases and wellness.  What I think is REALLY interesting is that, to use this site, you do NOT have to be an insurant of UHG….so access is not limited…..interesting.

 

http://www.myoptumhealth.com/portal/

Posted October 27, 2010 by terieleawatkins in Uncategorized

Oliver Sacks on Fresh Air   Leave a comment

I heard a portion of this interview on my way to work today, and I thought it really ties into Stacey’s text. Among other things, Sacks recounts his experience with a tumor which cost him the vision in his right eye.

http://www.npr.org/templates/story/story.php?storyId=130732146

Posted October 26, 2010 by MGalbreath in Uncategorized

My Mom Is Awesome   1 comment

This was by far the hardest reading for me, mainly because it hit the closest to home. In 2004 my mother was diagnosed first with ovarian cancer then with breast cancer. Several surgeries and several hundreds of pills later, she is almost fully recovered, but the last thing she wants to be called is a “survivor”.

I just got off the phone with her, and we had a long, rather amazing discussion about how much she hates the cultural narrative surrounding this disease. Its as if the term “cancer” has gained so much awe and weight that in order to beat it, we have to reimagine the cancer patient as mythic hero battling a demon in their own body. My mother disagrees.

“I was drugged up most of the time! I barely felt it!” she laughed as I described the first part of chapter one: Heroes. “I felt worse for you guys. You had to actually see what was happening to me. If I felt anxiety or anything, they gave me pills and I fell asleep. You guys couldn’t do that.”

But this attitude wasn’t just my mother being modest; she was outright hostile toward those who would try and act out the narrative when dealing with her. “You remember when you would visit me and the (religious individuals)* would come in and tell me ‘everything will be ok’ and ‘God doesn’t give you more than you can handle’? Remember how I told them to (please leave)*? I hated that! Hell, I hated it when you did it too!”

She even rejected any chance to socialize with other cancer patients in help groups or online forums or to read books from cancer survivors. In fact, the only cancer book she read was Cancer Schmancer by Fran Drescher because it “didn’t have any bull*” in it”.

Buy why did she feel this way? Why reject this narrative that so many others find so comforting. While we were talking, I mentioned the video Kathryn posted, “The Best Gift I Ever Survived” and her response was decidedly negative. “It’s not a gift! Diamonds are a gift! A million dollars is a gift! Cancer is cancer!”

There was a pause, and then, “people are weird. They need to feel like there is a purpose to everything. There isn’t; it just is. When you’re a kid and you fall down, is there a reason? No. Did God do it? No. You’re a kid. You fall down. You get back up. That’s all. I had cancer. I got over it. I’d like to not think about it, not be reminded by everyone that I’m a ‘survivor’.

“It’s not like cancer is the only thing that could kill me. I could go out and get hit by a bus. Then what? I’m some sort of ‘bus survivor’? Its something people have to deal with. I shouldn’t get special treatment for it. (That’s why) the worse part was losing my hair. I could hide scars under clothing, but everyone can see a wig. I knew I was wearing a wig. I had to be reminded. I don’t want a reminder. I want it behind me.”

Of course, this did not stop her from using this opportunity to invite herself over for the weekend. How could I say no? After all, my mom is awesome.

 

* euphemisms as needed, because my mom is more awesome than yours

Posted October 26, 2010 by capochetta in Uncategorized

Quick Video Share   Leave a comment

Reading trough Stacey has made me think about this video that I saw not that long ago.

It’s not long, only 3 minutes, the last three are a commercial for Rolex watches. I just think that this is a really intersting example of the survivor narrative, but I think the most interesting bit is how many dislikes this video has. Apparently this isn’t the narrative that people want to hear.

Posted October 26, 2010 by kathryndunlap in Uncategorized

Sometimes even yoga isn’t enough   Leave a comment

Breathe in, breathe out… my preferred form of health care. I write this response fresh from Bikram yoga, my holistic healing method, which has all but cured my carpal tunnel, improves my Interstitial Cystitis, is an effective approach to stress management, and perhaps (with that said) might be considered cancer prevention. Healthy mind, healthy body. Healthy spine, long life. While this may or may not be true, perhaps our belief in its truth is enough to produce a healthy body and long life. This is somewhat at odds with traditional biomedical approaches which rely more on the mind/body split than a sense of unity between mind and body. However, as Stacey explores, alternative, holistic approaches and beliefs are finding their way into conventional medicine.

This week’s reading took me back to every Thursday and Friday in the last eight months of 2009, the days we spent twelve hours a piece at MD Anderson throughout my mother’s chemo. I don’t like to continually bring my personal experience into my discussions, but sometimes it’s just too fitting not to. Stacey rehearses the clichés: “A positive attitude makes recovery more likely; mind over matter will conquer the disease; listen to your cancer, it may have something to tell you” (26). Clichés such as “healthy body, healthy mind” apply to cancer prevention as well as treatment. “Many alternative approaches to cancer imply that the person with cancer can determine the course of their illness through sheer willpower. They construct a model of health in which if you do all the right things for your body (feed it well, love it, encourage it, relax it, and so on) then it will be good to you and stay (or become) healthy” (186).

My mother was a model of positivity and strength. She did everything “right,” including getting up and dressed and wearing makeup (even for chemo) with the hope that the “look good, feel good” philosophy would work for her. She continued working as much as possible, planned future vacations, and friends visited frequently. She survived, she is recovering—great. But we saw many patients who went through treatment with her who won’t survive, no matter how “good” they looked or how optimistic their attitude. For many patients, all the positivity and yoga in the world isn’t enough to save them or keep them from “getting” cancer in the first place.

If I get cancer, does it mean I have not done everything I could to prevent it? Does it mean I have lived a life that fostered the very condition that could end it? Was it my mother’s job? All those years of stress? Or was it my teenage rebellion? My father’s drinking? The black hair dye she continually used throughout her adult life? If I get cancer, is it my fault? Was it my mother’s fault? When my mom was diagnosed with Lymphoma in early 2009, I secretly feared I caused it and this text brought that concern to the forefront of my mind. “According to several accounts, the fertile ground for the onset of cancer is provided by the destructive impact of stress, trauma and loss on the body of the patient” (117). I was an extremely rebellious teenager and my mother started developing various illnesses during that time. She developed asthma and allergies, respiratory infections, and was hospitalized twice for an inability to breathe. Eventually we both got better and life returned to normal, healthy, and happy. Of course it did not stay that way and when my mom was diagnosed, I wondered to myself if it was my fault.

“In conventional medicine, illness is understood as an exclusively bodily process,” following Descartes’ mind/body separation (107). Conversely, holistic medicine, as well as our understanding of illnesses such as cancer as mind- and body-based diseases, emphasizes the connectivity between one’s mind and one’s body. I had heard that stress and negative mental states could cause cancer but until reading Stacey’s detailing of the Simonson model, did not understand how or why. As the Simonson model suggests: “What is referred to here as the ‘mind’ is actually the physiological processes through which emotions are processed in the body. In their model of cancer development, for example, feelings of despair, resulting from stress, are processed by the ‘limbic system’ (the visceral brain) which records stress and its effects. This is then passed on by ‘the hypothalamus’ […] which triggers a hormonal imbalance in the body and suppresses the immune system, leaving the body susceptible to the growth of abnormal cells” (113). From this view, one might wonder where any division between the mind and the body exists; if thoughts and emotions are physiological processes, then how can our minds be considered separate entities? And if our mind and body are in union with one another, then why can’t we self-diagnose? Why don’t we just know what is wrong with us? Such is the dilemma Descartes furthered.

Part of the “mythology” of cancer that enables heroes to emerge is the way it seems to “befall” people. It can strike anyone at anytime; no one is immune. Popular cultural heroes like Patrick Swayze and now Michael Douglas struggle under a watchful public eye, their “battles” publicized and serving as reminders of how unexpected and fierce cancer can be. There is a tension between this idea that we can cause or cure our own cancer and the fact that it often strikes so unexpectedly and viciously that one may not stand a chance.

All these issues make me wonder about the implications of “self-causation,” especially for patients. Is it easier to blame the environment or freak causes than one’s self for something as grave as cancer? Does it matter? This question can also be applied to HIV/AIDS and Chris’ discussion point around that.

Posted October 26, 2010 by Lela in Uncategorized

The power and prejudice of narrative. . .   2 comments

Wow. I am emotionally exhausted from this week’s reading assignment. Really, put a fork in me—I am done. My initial reaction is a testament to the power of the cultural study and Jackie Stacey’s strategic insertion of her own personal narrative within it.

After reading the introduction, it was clear to me that Stacey was addressing what happens when narratives, which can be powerful tools for understanding ourselves and others, become standardized discourse rather than individualized, honest storytelling. She describes the “kinds” of narratives available to cancer patients, and they were familiar to me. They have become a cultural construct through which cancer patients and their loved ones are meant to recognize themselves and their struggle. We are meant to take comfort in these stories, to relate to them. However, when your perception of what it means for one to have cancer does not match the rhetoric of cancer narratives which comes from a very patriarchal (“hero” v. “monster” binary) of biomedical discourse, what is one left with? This, Stacey points is the power and danger of standardized narratives.

She eloquently points out the gaps in which she lives, in which her story is told. She admits that her own “imagination” has been structured by these standardized narratives (6). They are ubiquitous. What Stacey illuminates is how she came to recognize these constructs, these standardized/sanitized narratives as not of herself: “the whole episode felt as though it was somebody’s else’s script, not mine” (6). Stacey recognizes the power of the dominant discourse to affect the way that we see and understand ourselves, and she acknowledges that there is some measure of psychic discord when how we feel and think does not seem to match what we have been taught through conventional wisdom that we should feel and think.
This rings true, in a general sense, to any kind of marginalized identity. One might think that she knows what society thinks of her and what she should and should not be and do, but there is something else; There is an alternative way of knowing and understanding that requires one to look inside oneself and to question conventional wisdom. We saw a glimpse of this with Our Bodies, Ourselves, which Stacey invokes as an example of a narrative text that has “enabled many women to resist the passivity and alienation of the patient role and to combat their dependency on the masculine medical profession” (103). Stacey goes on to explain how “guilt” is used as a tactic to get patients to comply, and she marks this as a gendered move that affects women differently from men, though it is not acknowledged as such (196).

It is in Ch. 6 that I start to see exactly what Stacey means when she says that “race, class and gender” inscribe inequity in addition to the inequity in the doctor, patient relationship (102). The narratives of cancer prove to be insufficient because they tend to address the world view and needs of only a certain type of cancer patient: the hero. This universalizing leaves a lot of individuals in the dark to navigate cultural and biomedical practices without a map that they can read and relate to.

It was tough but so very valuable to read about how Stacey came to navigate uncharted territory and how she is lighting out for the territory to pave the way for others to at least question the value of the current trajectory of cancer narratives and culture. As she acknowledges in Ch. 8, it is a lot of pressure to live up to—to be a survivor, to be wiser, to have some special knowledge of how to dispel the mysteries of mortality. Isn’t all that just stories we tell ourselves rather than the challenging reality of the permanent mysteries of death and indeed, recovery?

If, as Stacey asserts, both standard medicine (relying on objectifying the body) and alternative medicine (relying on objectifying the will of the person) both encourage “mastery over mystery,” are we to understand that the illusion of that mastery is a good thing for some and not for others (238)? It seems that these narratives have to have been predicated on some working model, right?

Posted October 26, 2010 by jenwojton in Uncategorized

Mysteries, Diseased Identity, and Feminism (oh my)   3 comments

I suppose I feel like picking nits today, because the points I want to make are all taking direct objection to things I found in Stacey’s text. Don’t get me wrong: I really appreciate the attention she draws to the perspective she takes, and I truly enjoyed reading her text. But, for the sake of discussion, I’m going to be a bit contrary.

I’d like to start with something I found on page 238: “What is intolerable to both modern science and to self-health philosophies is mystery.”

While I certainly agree with the paragraph surrounding this isolated sentence, I’d like to take issue with this particular idea. In my mind, mystery is exactly what drives science forward, rather than being a fact which makes scientists fume with frustration. Indeed, it is the very mystery of science that I think draws its greatest advocates toward its continued study. In a letter dated March 7, 1958, Richard P. Feynman explained his thoughts on why science is worth presenting on television: “I am a successful lecturer in physics for popular audiences. The real entertainment gimmick is the excitement, drama, and mystery of the subject matter” (98). To Feynman, the mystery behind science was exactly what made its study so compelling. I think that without mystery, there would be no need to do science in the first place.


Between this and last week’s readings, I was struck by how modern diseases have helped blur the lines among self, body, and disease. If we exclude HIV and cancer, a disease is generally a thing that compromises the body, and the self is inconvenienced as a result. With cancer, the body itself makes a misstep, and the self is often seen as being responsible. (I suspect this issue was covered in greater detail in Chapter 7, but Stacey did enough discussion of how numerous people believe that “happy thoughts” are enough to rid oneself of cancer.) On page 149, she states the tension outright: “Rather than being invaded by external threats, the problem lies within: we may be a danger to ourselves.” This auto-antagonism is perhaps even more visible in the case of HIV. When the very biological system designed to protect a body against disease suddenly becomes the system that is welcoming and propagating a disease, it becomes impossible to separate body from illness. The way we discuss HIV is reflective of this condition: a person clearly has cancer in his or her body; however, we say that a person is HIV+. Suddenly, the disease is not contained; it is an identifier or characteristic of the self, not even just the body.

I suspect that to find another example of the disease that so completely overwrites a person’s identity, we might need to go back in investigate leprosy or change the scope of it and begin discussing mental illness, which often lends itself to this sort of labeling: a person is bipolar or is schizophrenic or is depressed; it is not necessary to say that a person has bipolar disorder or has schizophrenia or has depression. Then again, is just as possible to say that a person suffers from bipolar disorder, schizophrenia, or depression—setting up the adversarial condition discussed above. How odd would it be for a person to say, “I’m suffering from influenza,” or, “I am influenzic”?


And finally, I would like to highlight an issue of interpretation that I almost expect Jen and Elle to sweep down and correct for me. This difference in thinking goes back to Bowdon’s gender class that several of us took last semester. To provide context, I shall oversimplify. The feminist perspective is that science is male-dominated and hegemonic; therefore, it should not be trusted. Last semester’s class had a grand total of three men in it, and all three of us were, not surprisingly, defensive. We had an intrinsic faith in the pure innocence of science and had trouble accepting the highly skeptical (dare I say ‘embittered’?) standpoint of feminism. I found the same defensive stance developing again when reading page 152:

“These new imaging technologies boast of practically military accuracy, and… has an aura of unquestionable precision which offers a fantasy of omnipotence, generating considerable excitement within medical innovation and popular representations of it. What is forgotten as these new technologies are embraced as the guarantors of the truth about our bodily interiors is that, like any other imaging technique, they may lead to confusion and disagreement. In my case…I did not doubt the information…but it never occurred to me that the scan reading might be mistaken. As it transpired, on further inspection with ultrasound, there proved to be nothing ‘abnormal’ at all: the radiologist had probably ‘over read the image’. This experience…revealed an unexpected trust and scientific imaging technologies to tell me the truth about my body.”

In this section, Stacey fails to distinguish between the technology and the user of it. She believes that the imaging technologies have failed her and that they did not present “the truth about [her] bodily interior.” A single nod to the error of the radiologist is the only thing acknowledging that “the scan reading might be mistaken.” Is the technology at fault here, or is the human operating it?

I understand that by including these questions, I am digressing from the actual intent of the text. However, it is a genuine concern of mine, a frustration remaining from last semester, and an issue that will undoubtedly surface when Will and I do our presentation on medical imaging technology. I am curious to hear the views of others on this matter, not only to clear up my own uncertainties, but also to prepare me for facing my audience during our presentation next month.


Reference:

Feynman, R. and Feynman, M. (2006). Perfectly Reasonable Deviations from the Beaten Track: The Letters of Richard P. Feynman. Basic Books.

Posted October 25, 2010 by Chris Friend in Uncategorized