{"id":2361,"date":"2018-10-25T14:35:44","date_gmt":"2018-10-25T18:35:44","guid":{"rendered":"http:\/\/journals.law.harvard.edu\/jlg\/?p=2361"},"modified":"2018-10-25T14:42:50","modified_gmt":"2018-10-25T18:42:50","slug":"a-patient-struggles-to-be-heard","status":"publish","type":"post","link":"https:\/\/journals.law.harvard.edu\/jlg\/2018\/10\/a-patient-struggles-to-be-heard\/","title":{"rendered":"A Patient Struggles to be Heard"},"content":{"rendered":"

\"\"<\/a><\/p>\n

A Patient Struggles to be Heard<\/strong><\/h2>\n

by Ann Tweedy<\/strong><\/p>\n

[Full PDF of Essay<\/a>]<\/p>\n

When I received a call from a nurse notifying me that I had breast cancer, my first sensation was shock.\u00a0 I was at work at the time, and the call came in a day earlier than I had expected.\u00a0 The nurse sounded apologetic, her voice strained yet matter-of-fact.\u00a0 I heard her words\u2014\u201cboth biopsies came out positive for invasive lobular carcinoma\u201d\u2014and tried to absorb the reality that I had cancer.\u00a0 But it was as if my being was beginning to float away, almost as though I was having an out of body experience, looking down at myself from above.\u00a0 Floating up and away seemed safest, but I tried to stay seated there on that office chair, to understand what I was being told.\u00a0 My memory is blurry as to what happened next, but I think I called my husband and then I remember driving home within a few minutes of receiving the nurse\u2019s call.\u00a0 I texted a dear friend with the news on the way home, and she responded with concern as well as advice to be careful driving.<\/p>\n

Part of the shock was due to the fact that I had been told initially that the tiny lump in my underarm was unlikely to be cancer, and this unlikelihood had been reinforced throughout the ensuing series of mammograms, ultrasounds and biopsies. \u00a0After the shock came a wall of grief.\u00a0 At that point in my life I was going through a period of depression\u2014within the past year and a half or so, I had been laid off from a tenure-track law school teaching job due to plummeting admissions, my mother had become homeless, and I had fallen into a deep attraction, which led me to question my long-term relationship with my spouse. \u00a0Although I was fortunate to have a new and very rewarding in-house counsel job, I felt lost and had frequent spates of hopelessness.\u00a0 When I wasn\u2019t busy, my mind would often start to ponder whether those I was closest to might be better off if I didn\u2019t exist.\u00a0 The diagnosis felt like final confirmation that my life would never get back to normal.<\/p>\n

In the midst of this grief, and as it gradually abated during the months of treatment, I began to notice how disempowering it felt to be a patient.\u00a0 Cancer patients tend to have a plethora of doctors, and I saw even more doctors than the average patient because I sought second opinions on several issues and also switched oncologists.\u00a0 The feelings of disempowerment and even dehumanization were more pronounced with some doctors than others.\u00a0 Indeed, my impression, based on a very small sampling, was that the more elite institutions had less respect for patients.\u00a0 But even in the most patient-friendly doctors\u2019 offices, I had the sense that my life had been virtually turned over to the medical profession.\u00a0 What I ultimately found is that, on some level, being a patient is, at least on a de facto basis, synonymous with lacking autonomy.<\/p>\n

At the same time, I slowly came to find solace in learning about my condition and taking charge of my treatment options.\u00a0 I learned that cancer is, even for doctors who specialize in it, a terrible void of knowledge.\u00a0 In the midst of my utter terror and my anger about the harsh effects of various treatments, I took comfort in my brain\u2019s ability to sort out the complexities of each option, to wrestle with the series of Catch-22\u2019s that cancer patients are faced with.\u00a0 I was lucky to have the support of my spouse and many friends, far and near.\u00a0 I leaned on them and cried to them.\u00a0 And yet I often felt isolated in my illness, not because of anything to do with the quality of support I was receiving but because no one in my support network was facing death as immediately as I was at that moment.<\/p>\n

At the times when I felt most alone, I took comfort in my brain\u2019s workings.\u00a0 I felt that I could, after hours of research and hand-wringing angst, evaluate what the doctors were telling me and choose a course of action.\u00a0 I could talk to the doctors in their own language, and this ability helped me regain some of the power I lost when I walked through the doors of the first doctor\u2019s office and became, at least from outward appearances, a person who simply showed up for seemingly endless appointments and obediently followed instructions, a passive recipient of damaging expert treatments that were designed to save my life with little attention to what I might lose in the process.<\/p>\n

Sociologist Arthur W. Frank describes how medicine \u201cclaim[s] the body of the patient as its territory,\u201d quoting a quadriplegic counselor and writer who further notes that, when admitted to a hospital or visiting a doctor, \u201c\u2018[w]e stop being people and start being patients\u2026\u2019\u201d[1]<\/a> \u00a0Looking back now, I can see both of these phenomena as aspects of my experience and also can see that it was pushing back against medicine\u2019s generalized view of my status as a patient and of my disease that helped me empower myself.[2]<\/a><\/p>\n

In the course of my breast cancer diagnosis and treatment, there were many times when I felt that my body either had been appropriated by my providers or was in the process of being appropriated\u2014in other words, claimed as medicine\u2019s territory.\u00a0 Some were overt and some were subtle.\u00a0 There are several instances that I could not see at all at the time, that are only apparent in retrospect.<\/p>\n

First, there was the sheer volume of appointments.\u00a0 In the beginning, the appointments were two or three times a week.\u00a0 The last six weeks of actual treatment (two years out from completing my treatment, I still go to the oncologist once every three months) required daily appointments for radiation treatment.<\/p>\n

Given the driving involved and the time spent sitting in waiting rooms leafing through magazines, worrying about future test results, and anticipating the pain of biopsies and other procedures, these appointments ate up huge chunks of my workdays.\u00a0 Indeed, I still feel a vague sense of nostalgia when I pass the hospital complex where I had surgery and radiation treatment, as one might feel in passing a house she used to live in\u2014a house where difficult things happened, but still a house associated with a formative part of her life.\u00a0 It is not at all an exaggeration to say that that hospital complex where I initially met with my surgeon and had the majority of my tests and treatments became a kind of second home.\u00a0 Part of the claiming of my body was the claiming of my life.\u00a0 Instead of my usual family, social, literary, and law-related activities, my primary focus came to consist of being available to treatment.\u00a0 My customary orbits were disrupted.<\/p>\n

Another aspect of medicine\u2019s claiming of my body was that the doctors I met with, even those who were the most attentive and compassionate, such as my surgeon, Dr. McDonnell,[3]<\/a> made assumptions about my willingness to undergo any and all conventional treatments that were recommended.\u00a0 These assumptions may seem completely normal\u2014the vast majority of cancer patients probably attempt to live by these sorts of recommendations, in many cases without a second thought.\u00a0 The drive to stay alive is very strong in most of us, after all.\u00a0 But the perceived normality is tied to the fact that medicine claims the patient\u2019s body as its territory.\u00a0 If this were not the case, one can imagine a more equal relationship between the doctor and patient, one in which the doctor routinely solicited information about the patient\u2019s wishes and goals for treatment.[4]<\/a>\u00a0 However, as I discuss in more detail later in this essay, in my experience with cancer specialists of various types, I had to be quite vocal in voicing my questions and desires in order to interrupt the cookie-cutter approach to my treatment. \u00a0In that sense, I think that medicine\u2019s claiming of the patient\u2019s body, as described by Frank, is linked (or at least in my case was linked) to another phenomenon described by Frank, namely medicine\u2019s reduction of the diversity of suffering (and disease and treatment) to a unifying general view.[5]<\/a> \u00a0Both the volume of appointments and the assumptions built into my surgeon\u2019s interactions with me were somewhat subtle indicia of appropriation.\u00a0 Nonetheless, from the beginning, I was keenly aware of the disruption caused by the copious appointments. \u00a0I remember commenting at the time to another writer who had had cancer that I felt like I lived at doctors\u2019 offices. \u00a0My freedom to plan my own activities is something I treasure, and it was startling to see it evaporate in an instant.\u00a0 By contrast, I was too scared during my initial appointments to notice my surgeon\u2019s assumptions, and I also think that her assumptions are so normalized in our culture that they were hard to notice.<\/p>\n

However, my sense that the medical establishment was attempting to appropriate my body in order to cure it came into full force when I sought a second opinion at a well-known cancer hospital in my area. \u00a0The appointment had to be scheduled a little more than a month after I was first diagnosed because of the demand for treatment at this clinic. \u00a0What I walked into\u2014and had, in fact, sought out\u2014was a team approach to medicine in which the newly diagnosed patient meets with a small handful of cancer specialists that will potentially be involved in her treatment. \u00a0In my case, the team consisted of an oncologist, a surgeon, a physical therapist, a radiation oncologist, a nurse (with the title of nurse navigator), and a medical fellow who was training to specialize in radiation oncology.<\/p>\n

So many things went wrong at this appointment that it would be hard to recount them all.\u00a0 For instance, the radiation oncologist never showed up.\u00a0 The doctors who met with me were both late and in a rush.\u00a0 (While I generally think it\u2019s understandable when doctors are late, I found the combination of their being late and in a rush upsetting and even infuriating.)\u00a0 The surgeon, Dr. O\u2019Brien, was the one who was most obviously rushing\u2014she was breathing heavily, almost gasping between sentences, and walking and talking fast.\u00a0 I could sense her concern about getting to the next patient and the next.<\/p>\n

Another issue was that the fellow on the team seemed very awkward in discussing breasts.\u00a0 He was in charge of having the initial discussion with me, going over a questionnaire I had filled out ahead of time.\u00a0 After he left, while my spouse and I waited anxiously for the surgeon and oncologist to come in, the fellow burst back in and embarrassedly asked me for my bra size, explaining sheepishly that it was part of their analysis.\u00a0 Afterward, I wondered if the fellows\u2014and perhaps all other doctors in the clinic\u2014are hired with no regard for their ability to converse with patients.<\/p>\n

However, what stood out most of all to me about that long afternoon at the clinic was the fact that most of the team\u2014particularly the surgeon and the fellow\u2014seemed to have zero understanding that I was a human being who was entitled to make my own medical decisions.\u00a0 Even though the surgeon, who seemed to fancy herself to be the one in charge of the entire team, was a woman, I had the strong sense that sexism was part of the equation in this apparent drive to erase my autonomy.[6]<\/a>\u00a0 This was, after all, a breast cancer team that met primarily with women.[7]<\/a>\u00a0 Perhaps the condescending and aggressive attitude of some of the team members was based in part on the sex of the vast majority of their clients.\u00a0 At any rate, I had the distinct sense that I was not playing the role they envisioned for me as an obedient patient who was sufficiently impressed with their expertise to defer to any and all recommendations. \u00a0The one exception to this point of view seemed to be the oncologist, who, when I asked him outright, said that he was comfortable with patients making their own decisions even when they deviated from his recommendations.<\/p>\n

The surgeon began with a hurried rundown of all her credentials, highlighting the quality of the schools she had attended and the fact that she taught medical students breast cancer surgery and focused her practice exclusively on breast cancer surgery.\u00a0 During this monologue, it was clear that she was contrasting herself with the other doctors I had been seeing at the smaller hospital, who did not focus exclusively on breast cancer but dealt with other types of cancer as well.\u00a0 Her education and teaching background did not strike awe in me as perhaps they were intended.\u00a0 I had gone to good schools as well and similarly had taught professional students.\u00a0 I have some regard for those types of qualifications but don\u2019t see them as the end-all and be-all.\u00a0 Her exclusive focus on breast cancer gave me some pause\u2014I couldn\u2019t deny that there could be a benefit to having a surgeon who focused solely on my type of cancer.\u00a0 Perhaps she would know things that those who had to keep up with developments relating to many different types of cancer would not.\u00a0 At the same time, I was dismayed that she was inviting me to look down on the doctors whom I had already been seeing, whom I liked and respected.<\/p>\n

After the monologue on her credentials, she told me forcefully that she and the rest of the team had decided that I needed a mastectomy.\u00a0 This was extremely upsetting as I had been planning to have a lumpectomy and had discussed this plan extensively with the first surgeon I had met with, Dr. McDonnell. \u00a0However, when I told Dr. O\u2019Brien that I planned to have a lumpectomy, she responded, \u201cThat will take half your breast,\u201d and proceeded to tell me that cosmetically it did not make sense for me to have a lumpectomy.\u00a0 I said I planned to get reconstruction after the lumpectomy, but she shook her head and said, patronizingly, that the team \u201chad decided\u201d that I was a \u201cgood candidate for reconstruction\u201d after the mastectomy and that they would refer me to a plastic surgeon and I would be \u201callowed to get reconstruction.\u201d\u00a0 All of these statements were phrased as if I had no agency whatsoever.<\/p>\n

I knew that part of her cosmetic argument was based on erroneous information\u2014a radiologist had recently discovered a mistake in one of my MRI reports, which related to the location of one of my tumors, but, when I tried to explain this, she would have none of it.\u00a0 She said she would look at any new test results and reports that came in, but she doubted that they would affect her decision.\u00a0 She also said in a vaguely threatening way, as if talking to a child, that would send a letter to my original surgeon, Dr. McDonnell, and tell her of her (Dr. O\u2019Brien\u2019s) recommendation, so that \u201cshe will have that.\u201d\u00a0 The premise of the threat, as I understood it, was that Dr. McDonnell would be impressed by Dr. O\u2019Brien\u2019s credentials and would see the error of her ways.\u00a0 The idea that I should be the one to make my own treatment decisions, whether based on expected cosmetic or medical results, seemed to be, to Dr. O\u2019Brien, preposterous.\u00a0 By simply making an appointment and showing up for it I was perceived to have turned my body over to the team.<\/p>\n

The radiation oncology fellow backed Dr. O\u2019Brien up, reinforcing her view that I had no choices to make.\u00a0 He told me that I would not need to see the radiation oncologist because the team was recommending a full mastectomy.\u00a0 The unstated step in his logic was that therefore I would<\/em> get a full mastectomy.\u00a0 The fact that I didn\u2019t want one was irrelevant to them.\u00a0 The nurse navigator, a person whose job it was, as her title suggests, to help patients navigate through the maze of providers, also held the same erroneous assumption that I had to follow the doctors\u2019 advice.\u00a0 She was sorry, she told me.\u00a0 She was out of the room but had \u201cheard most of it.\u201d<\/p>\n

Even leaving the issue of possible sexism aside, the entire experience was deeply troubling, and, in that moment, devastating.\u00a0 The clinic was rated highly in a local magazine, and so I had very much hoped to transfer my treatment there and had anticipated receiving very high quality care at that clinic.\u00a0 I had envisioned this clinic as a place where I could be safe in the knowledge that I was receiving the most cutting-edge and highest-quality care that was available, a place where I could go and not wonder later if I had found the right provider or received the right type of treatment.\u00a0 However, the reality I encountered did not make me feel safe at all.<\/p>\n

I had known since my first meeting with Dr. McDonnell\u2014which occurred the day after a nurse called me and told me that my biopsy results showed invasive lobular carcinoma\u2014that I wanted a lumpectomy (also called a partial mastectomy) rather than a full mastectomy.\u00a0 A full mastectomy removes all breast tissue, whereas a lumpectomy simply removes the tumor and a small amount of surrounding tissue.[8]<\/a>\u00a0 Radiation treatment is typically given in conjunction with a lumpectomy.[9]<\/a>\u00a0 Dr. McDonnell had given me the option of a lumpectomy and saw it as a reasonable treatment approach.\u00a0 A couple more small tumors had been discovered after my initial meeting with Dr. McDonnell, and these were still being tested when I went in for the second opinion. \u00a0However, I had discussed my preference for a lumpectomy no matter what these biopsy results showed with Dr. McDonnell, and she had agreed that this was a viable option.\u00a0 At the same time, she\u2019d cautioned me that the results of the surgery may not be aesthetically pleasing.\u00a0 She had further warned me that if the margins of the tissue that was removed contained cancer cells, she would have operate again to remove more tissue.\u00a0 This was a significant risk given the type of cancer I had.<\/p>\n

Part of the reason I didn\u2019t want a full mastectomy was that I wanted to preserve the feeling in my breast, which is not possible with a full mastectomy and reconstruction.\u00a0 But more than that even, I simply wanted to keep my breast for its own sake.\u00a0 I felt\u2014and still feel\u2014attached to it.\u00a0 I began to realize that my breasts were an important part of my image of myself and my sense of myself as a feminine person.<\/p>\n

I also planned to have some type of reconstructive surgery after my lumpectomy. \u00a0I knew from conversations with Dr. McDonnell that, in my case, surgery was likely to have a significant effect on the size and shape of my breast.\u00a0 Furthermore, I had seen my mother\u2019s discomfort in wearing bathing suits after she had had a modest lumpectomy and then radiation.\u00a0 (Radiation often shrinks the breast.)\u00a0 Because of my strong feelings about wanting to keep my breast, I was willing to take the risk of having unclean margins and having to have more surgery.\u00a0 The alternative\u2014a full mastectomy\u2014did not seem attractive even though it would minimize the risk of needing more surgery.\u00a0 Like feminist theorist Dian Price Herndl when she had to make decisions about breast cancer and reconstruction, I found I had to ask myself how much loss I could bear.[10]<\/a>\u00a0 I did not feel like I could bear much more loss at that point in my life.\u00a0 My mother\u2019s homelessness, the loss of my prized teaching job (even though it had been replaced with another very sought-after job), and my relationship struggles already felt like way too much for one person to deal with.<\/p>\n

This doctor\u2019s visit with Dr. O\u2019Brien and the other members of the team at the well-known cancer hospital terrified me.\u00a0 It was so important to me to preserve as much of my breast as possible and here these experts were telling me that that was not an option.\u00a0 It took me some time to collect my thoughts and remember that, of course, I had a choice. \u00a0As a lawyer, my mind often frames questions in legal terms, and so it was a comfort to remember the existence of informed consent laws and the due process right to bodily integrity (the hospital was affiliated with a public university). \u00a0Dr. O\u2019Brien had momentarily frightened me into believing that, in addition to her tacit refusal to perform one herself, she would convince other doctors not to perform a lumpectomy.\u00a0 At that low point\u2014which may well have been the nadir of the entire ordeal of cancer treatment\u2014the most comforting thought I could summon was that I could refuse medical treatment altogether.\u00a0 I could die of those tiny tumors if I wanted.\u00a0 It seems strange now, but at the time, that thought was very reassuring. \u00a0\u00a0I was an adult with a legal right to refuse medical treatment.\u00a0 No one could force me to undergo an unwanted surgery.\u00a0 I left that office with my spouse for the long drive home from Seattle through rush-hour traffic clinging to that thought.<\/p>\n

It was not that I wanted to die.\u00a0 Although dying had often been on my mind in the months before the diagnosis, ironically, having cancer was teaching me that I wanted to live.\u00a0 But I did want to preserve my autonomy, and my breast to the extent possible.\u00a0 And paradoxically, it began to seem in the upside-down landscape of that clinic that the only<\/em> way to preserve my autonomy would be to refuse medical treatment and actually die.\u00a0 Medicine had claimed my body as its territory.\u00a0 In my brain\u2019s distressed logic, the answer was to refuse to engage entirely and thereby thwart medicine\u2019s appropriation of my body.<\/p>\n

I had not yet read the late writer Kathy Acker\u2019s indictment of allopathic breast cancer treatment, but my sentiments in that moment echoed hers:\u00a0 \u201c[C]onventional medicine was reducing me\u2026to a puppet who, separated by fear from her imagination and vision, would do whatever she was told.\u201d[11]<\/a>\u00a0 After rejecting additional treatment beyond surgery, Acker ultimately died of breast cancer.\u00a0 Her refusal was largely rooted in Western medicine\u2019s attempt to turn her into passive victim, although her rejection of further treatment was also influenced by her lack of health insurance.[12]<\/a>\u00a0 As a creative writer and artist who was serving as an adjunct professor at the time of her diagnosis, Acker lacked insurance, and, although she had a sizable trust fund, felt that she did not have the resources to pay for additional treatment when it was discovered through surgery that the cancer had spread to her lymph nodes.[13]<\/a><\/p>\n

Unlike Acker and so many others, I was incredibly lucky to have good insurance at the time of my diagnosis.\u00a0 There is no way to justify the fact that so many people in the United States, when faced with a cancer diagnosis, find that they cannot afford the recommended treatment.[14]<\/a> \u00a0Indeed, racial subordination\u2014as well as sexual minority status\u2014contribute to the inability of many people to access medical care.[15]<\/a>\u00a0 In that sense, my good fortune was at least partly due to white privilege.\u00a0 My fears that Dr. O\u2019Brien would convince Dr. McDonnell not to perform a lumpectomy turned out to be ill-founded.\u00a0 Dr. McDonnell never mentioned the letter from Dr. O\u2019Brien, although I assume she received it (it is contained in my medical records from Dr. O\u2019Brien\u2019s clinic).\u00a0 Instead, Dr. McDonnell simply continued to check in with me to ensure that I still wanted a lumpectomy as additional biopsy results came in, and she ultimately performed one.\u00a0 The margins were clean.\u00a0 That part of the journey ended very well.\u00a0 My conviction that I might have to die to preserve my autonomy was not put to the test.<\/p>\n

I did return to the clinic where I had had such a difficult experience to see the oncologist I had met with during the team meeting.\u00a0 He had impressed me with his knowledge during my initial visit, and I tried to convince myself that he was better than the rest of the team.\u00a0 However, looking back at my medical records from that first day now, I feel a chill reading the closing lines of his letter to my surgeon:\u00a0 \u201cThank you for providing me the opportunity to meet with this young lady today.\u00a0 If you have any further questions regarding her management, please feel free to page me directly\u2026.\u201d\u00a0 His phrasing in this letter reframes my own unilateral decision to seek out a second opinion at that clinic as a decision of my original surgeon\u2014thereby erasing my agency\u2014and the need to manage my cancer becomes a need to manage me<\/em>.\u00a0 In short, my cancer had replaced my identity and individuality, and, if I ever had any decision-making capacity, becoming a patient had eradicated it.<\/p>\n

During the next visit with this oncologist, my first visit post-surgery, I had serious difficulties with both him and his new fellow. \u00a0The new fellow who was working with him proved the more troubling of the two.\u00a0 I met with the fellow before the oncologist came into the room.\u00a0 Right off the bat, the fellow was disdainful about my having undergone a partial mastectomy, remarking in a snotty tone, \u201cSo I see you\u2019ve had several lumpectomies.\u201d\u00a0 I assumed his evident disapproval was due to reading Dr. O\u2019Brien\u2019s recommendation for a full mastectomy in the chart notes on the computer screen he faced as he spoke, his back to me and my spouse.\u00a0 In a sense, it seems I was being punished\u2014or at least disrespected\u2014for pushing back against the idea that my body was in the hands of medical experts and was no longer my own.<\/p>\n

The fellow also took it for granted that I would be having chemotherapy because the pathology report from my surgery had revealed an infected lymph node.\u00a0 He did not bother to explain why it was recommended or ask me if I wanted to go forward with it in light of the recommendation.\u00a0 Instead, he simply said, \u201cSo you\u2019re coming to Dr. Gokhale for your chemo.\u201d\u00a0 To me, this was another indication of the assumption (which seemed to be pervasive in this clinic) that I had yielded control of my own body.\u00a0 What brought me to the outer edge of my ability to maintain composure, however, was the fellow\u2019s response when I asked why I needed chemotherapy.<\/p>\n

While I did understand before walking into that room that chemotherapy would likely be recommended in light of the infected lymph node, I still wanted to have the traditional exchange in which the information and recommendation were explained to me.\u00a0 To me, that is part of why one goes to a doctor. \u00a0Perhaps we could have an alternative system of medicine in which computers make medical recommendations and then treatments are administered by robots, but that is just not my vision of a well-functioning system.\u00a0 I wanted human interaction and at least tacit acknowledgement that I was making the decision about whether to follow the recommendation.<\/p>\n

When I asked why I needed chemotherapy, however, the fellow\u2019s ultimate response more resembled a grade school bully\u2019s comment than it did a medical professional\u2019s.\u00a0 He first said, \u201cIt\u2019s because you\u2019re high-risk.\u201d\u00a0 When I asked why I was high-risk, he said, referring to the fact that I had had a tumor in the breast tissue in my underarm, \u201cWell, most people don\u2019t have something weird sticking out from their underarm.\u201d \u00a0I literally gritted my teeth after that, hoping that every subsequent second would be the one in which Dr. Gokhale walked through the door.<\/p>\n

It is hard to understand what could have motivated the fellow\u2019s response, but I imagine my questions caught him off guard because it had not occurred to him that I was entitled to any kind of explanation.\u00a0 Instead of being a human being with agency and medical questions about the proposed treatment plan that needed answering, I was supposed to be a passive recipient of treatments. \u00a0I was expected to be so overcome by the fear of cancer that I would do whatever was demanded of me.<\/p>\n

The relief I anticipated with the oncologist\u2019s arrival was very short-lived.\u00a0 When Dr. Gokhale finally arrived, he informed me that he had to give a talk in fifteen minutes.\u00a0 I was devastated.\u00a0 After waiting a full month after surgery to be able to get in to see Dr. Gokhale, the entire appointment seemed to be not only a waste of time but psychologically damaging as well.\u00a0 I resolved to ask all the questions I had planned to as this seemed to be my only chance to do so before undergoing draconian treatments.\u00a0 Worse than his early departure, he could not answer my question about why I was high-risk because he could not remember the contents of my chart.\u00a0 In addition to being upset about his plan to leave the appointment early and his failure to prepare for the appointment, I was also bitterly disappointed that he refused to order a test of my tumors\u2019 genetic make-up that is used to evaluate the likely success of various treatment options such as chemotherapy and radiation.<\/p>\n

By this point, I had almost become the powerless puppet Acker described.[16]<\/a>\u00a0 I literally felt I had no choice but to continue with Dr. Gokhale because of the amount of time that had already passed since surgery.\u00a0 I was desperate to begin either radiation or chemotherapy, worrying more with every day that went by post-surgery.\u00a0 I did contact Dr. Gokhale\u2019s office to ask if I could see him without the fellow (the answer, thankfully, was yes), and I also felt modest relief when Dr. Gokhale called to apologize for being in a rush.\u00a0 I would have stayed in that very imperfect situation except that I contacted a medical listserv run by a well-known medical school the weekend after that Wednesday appointment to ask which of the types of chemotherapy that I had been offered would be best based on my pathology.\u00a0 The oncology nurse who responded to my query recommended that I get the test of my tumors\u2019 genetic make-up that Dr. Gokhale had refused to order, referring to that test as \u201cthe standard of care\u201d for someone with my pathology.<\/p>\n

This was the last straw.\u00a0 I could no longer tell myself that the problems with Dr. Gokhale, the fellow, and the rest of the clinic were simply a matter of poor bedside manner, that I was still getting good care.\u00a0 In retrospect, the clinic\u2019s apparent inability to treat patients with respect should have been more than enough reason to leave, but at the time I was very scared and not giving sufficient weight to taking care of my emotional well-being.\u00a0 This lack of sufficient attention was partly due to my perception, up until that point, that my emotional needs were in tension with my medical needs.\u00a0 \u00a0Luckily for me, however, this perfect storm of problems led me to try a different oncologist, one who was<\/em> willing to explain his recommendations and who acknowledged that I had choices.\u00a0 He ordered the test that the listserv nurse had recommended, the results of which allowed me to avoid chemotherapy.\u00a0 In fact, the test results indicated that my chances for long-term survival were slightly better without chemotherapy than with it, so I saved myself a good deal of pointless suffering by changing doctors.<\/p>\n

After that extremely negative experience with Dr. Gokhale and the fellow, everything went relatively smoothly.\u00a0 As mentioned above, I changed oncologists and never saw the fellow or Dr. Gokhale again.\u00a0 However, even after changing doctors, there were still instances when I felt that the default was to treat me as a patient rather than a person, where the doctors who were treating me seemed to assume that my body was their territory, that I would accept whatever their recommendation was without much need for explanation.<\/p>\n

For instance, the radiation oncologist who was treating me initially had planned to radiate a larger area of my body because I had not had chemotherapy and had had a positive lymph node.\u00a0 But in this and similar instances, I found that by being extremely vocal and seeking additional information by asking questions and researching, I was able to get my needs\u2014for information and to be the ultimate decision-maker\u2014met.\u00a0 In light of the side effects of radiation, I decided against having a larger area (which would have included my collarbone) radiated. \u00a0This was the right decision for me, though others might weigh the various risks differently. \u00a0After my two disturbing experiences at the Seattle clinic, I found providers who, instead of treating me \u201cas a diseased object that had to be \u2018cured\u2019 at all costs,\u201d[17]<\/a> could adjust to my preference for an active role in my own treatment.\u00a0 Unlike Acker, who ceased conventional treatments partly in response to negative experiences with her doctors and the disempowerment she experienced as a patient, I was able to change doctors when needed for my own well-being.\u00a0 I am now two years out from completing radiation.<\/p>\n

I was lucky in countless ways.\u00a0 I had good insurance, an understanding employer, a penchant for research, a detail-oriented mind, supportive friends and family, and a salary high enough to pay co-insurance and deductibles as needed.\u00a0 All of these advantages contributed to my ability to empower myself and disrupt the narrative of a passive patient who is merely acted upon. \u00a0These advantages, however, did not come about through chance.\u00a0 We live in a country in which such advantages are distributed based on race, income, sex, sexual orientation, non-disabled status, and other factors.\u00a0\u00a0 My race, income, and non-disabled status all lent me unfair advantages.\u00a0 Moreover, as one radiation oncologist told me when I went to her for a second opinion, I was \u201clucky to have choices\u201d about how much and what types of treatment to pursue.\u00a0 It so happened that my cancer was not that aggressive or that advanced, and, knock on wood, I lived to tell about it.<\/p>\n

\n

\"\"<\/a>Ann Tweedy<\/strong> is an Adjunct Professor in University of Tulsa College of Law\u2019s Online Masters of Jurisprudence Program and a Tribal Attorney for Muckleshoot Indian Tribe.\u00a0 She is a legal scholar specializing in tribal jurisdiction, tribal civil rights law, and gender, sexuality, and law. Her articles have been excerpted in textbooks such as Rubenstein et al.\u2019s Cases and Materials on Sexual Orientation and the Law<\/em>, and, in 2016, she presented the Rubash Distinguished Lecture in Law and Social Work on the topic of \u201cBi\/Sexuality at the Margins\u201d at the University of Pittsburgh School of Law.\u00a0 She is also a poet and author of The Body\u2019s Alphabet<\/em> (Headmistress Press 2016), which was awarded a Bisexual Book Award and a Human Relations Indie Book Award and was named as a finalist for a Lambda Literary Award and a Golden Crown Literary Society Award. She is currently at work on a memoir entitled That Which Disdains to Destroy Us<\/em> about her experience with breast cancer.\u00a0 This essay is a companion piece to her article, Insuring Breast Reconstruction<\/em>, 66 UCLA L. Rev. Disc. 2<\/a> (2018).\u00a0 The opinions expressed herein are her own and do not represent those of the Muckleshoot Indian Tribe.<\/p>\n

Professor Tweedy would like to thank Professor James R. Elkins for reviewing drafts of this essay, as well as the editors of Harvard Journal of Law and Gender<\/em> for their work on this piece.<\/p>\n

\n

[1]<\/a> Arthur W. Frank, The Wounded Storyteller: Body, Illness, and Ethics 10 (2d ed. 2013)<\/p>\n

[2]<\/a> Frank also notes that, in order to conceptualize modernist medicine, \u201c\u2018the diversity of suffering [has to] be reduced by a unifying general view, which is precisely that of clinical medicine.\u2019\u201d\u00a0 Frank, supra<\/em> note 1, at 11 (quoting Claudine Herzlich & Janine Pieret, Illness and Self in Society 23 (1987)).<\/p>\n

[3]<\/a> Names have been changed to protect privacy.<\/p>\n

[4]<\/a> For a discussion of the need for doctors to learn to listen better, see, e.g.,<\/em> Nirmal Joshi, Opinion, Doctor, Shut Up and Listen<\/em>, N.Y. Times (Jan. 4, 2015), https:\/\/www.nytimes.com\/2015\/01\/05\/opinion\/doctor-shut-up-and-listen.html [https:\/\/perma.cc\/EY2W-DCWE].<\/p>\n

[5]<\/a> Frank, supra<\/em> note 1, at 11 (quoting Claudine Herzlich & Janine Pieret, Illness & Self in Society 23 (1987)).<\/p>\n

[6]<\/a> Sexism is longstanding in breast cancer treatment, at least as a historical matter.\u00a0 \u201c[I]n the late nineteenth century\u2026doctors routinely removed patients\u2019 breasts without their permission or knowledge.\u201d Ann E. Tweedy, Insuring Breast Reconstruction<\/em>, 66 UCLA L. Rev. Discourse 2, 29 (2018).<\/p>\n

[7]<\/a> See<\/em> Know Your Risks: Breast Cancer Facts for Transgender Women & Men<\/em>, Fenway Health, http:\/\/www.thecentersd.org\/pdf\/health-advocacy\/breast-cancer-facts-for.pdf [https:\/\/perma.cc\/W6FB-AF8R] (\u201cTwo percent\u2026of all breast cancer occurs in the breast tissue of non-transgender men.\u201d); Male Breast Cancer<\/em>, National Breast Cancer Foundation, Inc., http:\/\/www.nationalbreastcancer.org\/male-breast-cancer [https:\/\/perma.cc\/CC7V-XRQ5] (reporting that less than one percent of breast cancers develop in males).<\/p>\n

[8]<\/a> See, e.g., Komen Perspectives – Lumpectomy versus Mastectomy for Early Invasive Breast Cancer (February 2011)<\/em>, Susan G. Komen, https:\/\/ww5.komen.org\/KomenPerspectives\/Komen-Perspectives—Lumpectomy-versus-mastectomy-for-early-invasive-breast-cancer-(February-2011).html [https:\/\/perma.cc\/E5B8-SRLL].<\/p>\n

[9]<\/a> Id<\/em>.<\/p>\n

[10]<\/a> Diane Price Herndl, Reconstructing the Posthuman Feminist Body Twenty Years After Audre Lorde\u2019s Cancer Journals<\/em>, in<\/em> Disability Studies: Enabling the Humanities 144, 149 (Sharon L. Snyder et al. eds., 2002).<\/p>\n

[11]<\/a> Kathy Acker, The Gift of Disease<\/em>, The Guardian, Jan. 18, 1997, at T14.<\/p>\n

[12]<\/a> Id.<\/em>; Jason McBride, The Last Days of Kathy Acker<\/em>, Hazlitt (July 28, 2015), https:\/\/hazlitt.net\/feature\/last-days-kathy-acker [https:\/\/perma.cc\/G5GC-4CWV].<\/p>\n

[13]<\/a> Acker, supra<\/em> note 11; McBride, supra <\/em>note 12; Chris Kraus, \u201cCancer Became My Whole Brain\u201d: Kathy Acker\u2019s Final Year<\/em>, The New Yorker (Aug. 11, 2017), https:\/\/www.newyorker.com\/books\/page-turner\/cancer-became-my-whole-brain-kathy-acker-final-year [https:\/\/perma.cc\/6CJW-R9WS].<\/p>\n

[14]<\/a> Whites are more likely to have insurance than many other racial groups, and LGBT persons, particularly bisexuals, tend to face additional barriers to accessing medical care compared to heterosexuals.\u00a0 Tweedy, supra<\/em> note 6, at 33.<\/p>\n

[15]<\/a> Id.<\/em><\/p>\n

[16]<\/a> Acker, supra<\/em> note 11.<\/p>\n

[17]<\/a> Tweedy, supra<\/em> note 6, at 29.<\/p>\n","protected":false},"excerpt":{"rendered":"

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