Archive for the ‘Uncategorized’ Category

posted by Amy on Mar 28

I live in three-month intervals between PET scans. When I get a “good” scan I can quit worrying and go back to pretending I’m perfectly healthy. My latest scan showed that my cancer is stable: no new lesions, and not a whole lot of change in the size or glucose avidity of the areas we’ve been watching. That’s excellent and happy news.

I was worried about this scan because just a couple of weeks before I went in to get it I began getting markedly more winded when climbing stairs or hills. Admittedly I’m overweight and out of shape, but the change was sudden, and came on for no apparent reason. I was also experiencing unusual levels of fatigue. And the voice production problem I’ve been having for about 16 months was getting worse. Sometimes while talking or singing I run out of air abruptly, and the sound cuts out. That was an acute problem a year ago and had gotten quite a bit better, until recently.

About a month before the scan I went to a cabin in Vermont for the weekend. It was a lovely retreat, but there was a lot of wood smoke, and I’m allergic to smoke. Then two weeks before the scan I spent three nights and four days in a building that has what I assume is mold contamination. I am extremely sensitive to mold, and I had a severe histamine reaction. My nose ran like a faucet. My head hurt, my body ached, I was exhausted, and I was coughing and congested.

I had the scan on March 20 and got the results on March 23. The report said that an area in the lower lobe of my left lung had collapsed because of pressure from the inflamed tissue in that area. Ah! A collapsed lung! That could explain the breathing and voice production problems.

The December scan report was the first one to label the inflamed areas in my lower lungs as “neoplasms,” and the first to describe “atelectasis” in the lung. When I read that report I emailed my oncologist and her assistant to say,

As thrilled as I am overall with my latest PET report, reading it reminds me that there is still some unfinished business with the pneumonia, interstitial lung disease, pneumonitis, or whatever you want to call it in the lower lobes of my lungs. This radiologist calls them “neoplasms” and concludes that it’s a tumor causing the atelectasis. He might be right, but he’s not basing that on a definitive diagnosis. As Dr. W said about a year ago, we’re treating an image.

I think I should have a workup done by a pulmonologist (one who doesn’t simply assume he/she knows what it is without investigating). That inflammation might be a chronic infection. Even if it’s cancer, given the good responses in other parts of my body, maybe we should think about local treatment. And in any case I’d like to have a plan for clearing out the goo and reducing or stopping the coughing.

Although my oncologist responded, “I agree,” nothing happened. When I met with her assistant on March 23 to talk about the next scan report I again said I wanted to be referred to a pulmonologist. I said my breathing had gotten worse, and I was experiencing fatigue. I said I was concerned about my collapsed lung. She said she’d talk to Dr. W and get back to me, but she didn’t. She also pushed back on my idea about local treatment for the cancer. She said that isn’t done with Stage IV cancer. I told her I know there is research showing that surgical removal of lung metastases prolongs survival. The next day I sent Dr. W a follow-up email that said,

I want to preserve lung function and breathe better, cough less. That may involve treating the inflammation and/or blocked airways. That might entail physical therapy. That might involve some kind of local treatment of cancer in my lower lobes. We don’t actually know what all is going on. . . . [but we do know that] (a) all the cancer drugs I’ve been on can cause lung damage (and so can GERD), (b) Kadcyla seems to have been the hardest on me, and the other side effects it caused are only now resolving, over a year after I quit taking it, and (c) it’s possible I have some other, or additional, disease or condition that’s causing (or exacerbating) the pneumonitis besides cancer.

I went to my primary care provider and got a referral to a pulmonologist. She cautioned me that it might not be possible to “fix” whatever the problem is. I said I understand that, but since we don’t really know for sure what the problem is, it is irresponsible to conclude that it’s not fixable. In any event, I am entitled to palliative care. I then called and scheduled an appointment for March 30 in the pulmonolgy department of the hospital where I am being treated for cancer.

In the meantime, I Googled atelectasis and learned that it can be helpful to: sit up straight, breathe deeply, and cough deeply. I also read something that made me decide to try periodically taking a deep breath and then holding it while thumping with my fist all around my ribcage on the left side. I do this “thumping” when I notice my exhales have become “ragged” or when I have a voice production problem. It usually makes me cough up some goo. My yoga teacher also suggested things I can do to improve my posture and my core strength, to keep from compressing my lungs.

Whether from those efforts or just because I’m farther out from the last allergic reaction, I am already getting better. My ability to climb stairs without stopping to catch my breath has returned. (That’s especially important because to get from the trolley to my front door I have to climb 93 steep stairs.) More dramatically, my singing is the best it’s been in over a year. My voice is stronger and clearer, it’s not cutting out, and I’m more easily hitting the high notes.

I don’t think Dr. W has been stonewalling me on this issue. I just think she’s too busy with her other work. But this is not the first time I’ve noticed that I’m far more interested in my health than anyone else is. I don’t find that scandalous or surprising, and I’m good at looking out for my own interests. But what about people who don’t have three college degrees or who have been acculturated to defer to and obey people in white coats?

With the internet it’s both easier and harder to be one’s own advocate now than it used to be. On the plus side, there’s a lot of good information, such as the article from the Mayo Clinic that I found about atelectasis. On the other hand, there is every sort of charlatan, flake, con artist, conspiracy theorist and snake oil salesperson on the web, and the stuff they put up is totally unfiltered and unregulated. Health care professionals probably hear all kinds of wacky things that patients found online, and no doubt get tired of debunking it all.

I did get just the slightest hint from both the oncologist’s assistant and my own primary care provider (a Nurse Practitioner) that they think I might be in denial. I’m not. I know I have Stage IV breast cancer. I know I’m most likely going to die from it eventually. But that doesn’t mean I shouldn’t keep trying for the best possible quality of life I can have. I’m not alone in my assessment. Dr. W has also expressed puzzlement about what’s going on and has shown interest in getting more information.

A PET scan is a good but blunt tool. It shows where there is inflammation, but it can’t distinguish between different kinds of inflammation. For example, I have a nodule on one side of my thyroid that also lights up on PET scans. It has been biopsied and found to be benign, yet it displays glucose avidity that “waxes and wanes,” to quote one radiologist. When, two years ago, I asked to have a biopsy of the left lower lung lobe, the cancer board originally said no, because it didn’t look like cancer. Then they agreed. The biopsy was positive, but the report said the cancer cells were “scant.” I know people shouldn’t go around getting biopsies willy-nilly, but I think it might be time to revisit that question.

In the meantime, I’ll keep working on my breathing, and hoping for the best.

 

posted by Amy on Mar 21

One of my professors maintains, quite stoutly (and rather often), that theology and the wisdom traditions have a great deal to contribute to solving the enormous challenges and difficulties of modern life, but theologians are nowhere to be found in policy making or planning processes. Not only is theology no longer considered the “queen of the sciences,” theologians are routinely mocked and marginalized. Theologians talk only to each other or, sometimes, to our own ecclesial bodies. We suck at demonstrating to anyone outside our inner circle that we know anything useful. This is partly because we are so defensive these days, now that Christendom is crumbling. This professor also thinks, and I agree, that it has a great deal to do with specialization and compartmentalization in education. In order to talk across disciplines a person has to have some understanding of more than one discipline.

It’s been a very long time since anyone trained in theological discourse pulled any weight in the halls of power. Theologians don’t even have a place at the table in their own universities.  A major reason for this shift is the neoliberal takeover of education. Listen to any speech, by anybody, about “education reform” or the objectives of education today. They always say it’s so students can “compete” in the “world market” and maintain some sort of exceptionalism or hegemony for the United States. Universities keep talking in terms of “value propositions” and “return on investment.” Both so-called liberals and conservatives see education, even public education, as a commodity, and students as products, but it’s more blatant in conservative circles. Scott Walker, the Republican governor of Wisconsin, recently tried to change the mission of the University of Wisconsin by adding language about workforce preparation and removing language alluding to the common good and “the search for truth.”

Theology is the human encounter with ultimate concerns. This quest is open to anyone, not just religious people or theists. Theology asks questions like, What is the best way to live? What is a good and just society? What’s wrong with us? How do we know what we know? How can we be better? What’s matters? How do we make moral judgments? How do we teach our young right from wrong, good from bad? What are the limits of knowledge? How can be we happy? What is excellence? You won’t get any help wrestling with these questions from pundits or politicians or professors these days. But we’re all fascinated and captivated by them, aren’t we? (At least the people who have the luxury of time to think are captivated.)

The wisdom traditions have a great deal to say about all of these things, and about happiness and virtue, about suffering, about evil, about love, about transcendence. Judging from the kind of pop theology that gets repeated publicly these days, not many people are being exposed to these rich traditions.

If you want to practice thinking theologically, especially if you are turned off by easy answers and black-and-white moralizing, you’d be much better off reading fantasy and science fiction, going to plays, or even watching TV than going to church or even taking a college ethics class. Yesterday after watching a YouTube video of Ursula K. Le Guin accepting a lifetime achievement award, I got The Lathe of Heaven on my Kindle and read it. It’s a short book, but it’s packed with brilliant insights into social ethics and human nature, plus it’s a wonderful story.

I’d love to teach an ethics class based on movies and TV shows, especially shows with morally complex (or dubiously moral) main characters–gangsters, outlaws, outcasts, revolutionaries, or spies. That’s where theology and ethics get interesting–in real-life situations, where people are more often forced to choose the lesser of two evils than presented a clearly delineated good/bad dichotomy.  In a class I took on cross-cultural religious ethics at Boston College the curriculum included two novels and a movie, all about clashes of Christianity with indigenous, non-Christian cultures. It was an effective way to engage with ultimate questions contextually and meaningfully.

People think metaphysically all the time. The trouble is, they usually start from thin, fragile, inadequate metaphysics. That is where we find ourselves today, and we keep getting stuck in fruitless and largely pointless arguments among people insisting that they are right and the people who disagree with them are wrong. We’re asking the wrong questions, and we’re drawing the wrong conclusions. We’re measuring the wrong things. We’re beating dead horses. And it’s all because we’re not starting from a sufficiently robust platform. What the Abrahamic religions and Buddhism (among others) can do is provide that robust platform.

Updated 3.28-15 to fiddle with my definition of theology and make a couple of other tweaks. Also, I have no idea how comments came to be closed. I didn’t do it, and I can’t figure out how to change it.

posted by Amy on Mar 11

I was recently hijacked emotionally by people who have power over me and misused it. They criticized and chastised me for failing to do things that they had never told me I was expected to do. It was reminiscent of multiple instances in my childhood, although this time nobody screamed, beat me, or washed my mouth out with soap. But it was enough like those childhood hijackings to induce a state of panic, almost dissociation, in me. I was flooded with fear and shame. All I wanted to do was get away from my accusers. My rational adult brain was not in charge. The abused eight year old who knew an existential threat when she saw one got me out of there as quickly as possible.

There was a time I would have just sucked it up and kept all of that to myself. I would have accepted the other people’s negative judgments of me and their characterization of the chain of events that led them to do what they did. I would have blamed myself for not knowing better how to please them and avoid punishment. Although I didn’t stick up for myself while the event was occurring, I also did not abandon myself. Beginning the next morning, I talked. I told quite a few people what happened. Without exception, they all confirmed that the other people’s behavior was inappropriate and regrettable. Everyone I talked to was shocked about the blatant misuse of power and lack of courtesy or empathy that I experienced. Many offered insights into what might have led to that unprofessional behavior, and most gave me helpful ideas for what to do now. I am very glad to have had support, guidance, kind affirmations and wise counsel from these friends,  colleagues and mentors. Also, I am very glad I did not become immobilized by the fear and shame that arose when it first happened. My ability to speak out (albeit belatedly) is evidence that I am continuing to heal from my emotional wounds.

But from the time it happened over a week ago until this morning I was physically ill. When my “Bodhi & Mind” yoga instructor came over for our scheduled appointment, she listened carefully to my story and proposed that we do some breathing meditation, restorative poses, and an extra-long yoga nidra practice. (Learn more about the program by clicking here.) After helping me get back into my body with sitting, breathing, and a brief body scan, she helped me into a restorative pose and suggested my mantra should be some version of “there is no tiger, ” such as, “it’s OK to relax,” or “I am safe.” When the session was finished I sat up and spoke to her. My voice sounded clear and normal, not raspy and breathless as it had before. I felt more focused, centered and calm. I told her that, and she said, “We just had to reset your system.” I had been stuck in “fight or flight” mode. I wasn’t consciously aware of that, but my body was madly signalling its distress with physical symptoms.

They say it’s not stress per se that damages people’s mental and physical health, but the way we respond to the stress. Although I was not consciously aware that I still felt threatened, I had slipped into an old pattern, and it was operating just below my awareness.

I do not blame the “hijackers” for what happened in my head. I understand that they have their own fears and anxieties, and were obviously not at their best at that time. The incident showed me that I need to keep working to be aware of what I am feeling and what I need. Next time I will be more proactive in honoring my own feelings and needs, and trying to get them met in real time, not simply afterwards.

Humans are hard wired to assess threats quickly and act on them. We make sense of our world by classifying new experiences based on what has happened in the past and what seemed to work to assure our continued survival. Someone who was abused as a child tends to be extremely sensitive to the kinds of unease, anxiety, fear and anger in others that can be precursors to violence, and to react in accordance with the perceived threat. While the “sensors” operate instantaneously without conscious thought, and are extremely accurate, the stories our prefrontal cortex tells about what’s going on are not infallible. Certain triggers can even cause emotional “flooding” that completely overrides rational thought. If something like this happens again I hope I will be more prepared to choose neither fight nor flight, but dialog and further clarification. And I know for a fact that relaxation, mindfulness, and breathing can help me remember that there is no tiger.

 

posted by Amy on Dec 14

Recently a friend asked me why I want a PhD. I fumbled for an answer, and ended up saying several things: Because I love being a graduate student, surrounded by smart, passionate people and swimming happily in an ocean of knowledge. Because I hope to help make the world a better place, both by participating in academia now and, if I live long enough, by what I do next. And, finally, I said it was because the sum total of all the advice my high school guidance counselor gave me was, “With your IQ, you should get a PhD in something.”

I am constantly reevaluating my decision. I transferred to BU in 2010 with the intention of finishing my M.Div. and going on somewhere to get a doctorate in something. I had recently done primary source research for a paper on Methodist church trials. It combined my love of history with my knowledge of the law, and I thought I might do a dissertation on that. But in my first semester at BU I took a class from Elie Wiesel. He meets individually with all his students. When I went to chat with him he asked me what I planned to do, and I told him about my interest in Methodist church trials. He looked bored, and I suddenly realized I wasn’t very passionate about it either. Over the next two years I took four classes in ethics from Norm Faramelli, and I figured out that I am very passionate about ethics.

Near the end of my second semester at BU I was diagnosed with metastatic breast cancer. I didn’t know if I would be able to stay in school. I thought I might die soon. (Median survival after this diagnosis is around 23 months). Most importantly, I thought it might be selfish to go on for a doctorate after I graduated in 2012. Everything was up in the air as the deadline for applying to doctoral programs approached. I was bald from chemo, ten pounds heavier from steroids, and still reeling from the diagnosis and its implications. I thought maybe I should go back to Colorado after graduation and take an appointment as a licensed local pastor. Maybe God was calling me to use my experiences as a cancer patient to minister to others.

I raised this concern when I met with Dr. Farmelli and his teaching assistant. The TA assured me that I would be in ministry as a doctoral student. In my work as a teaching assistant, research assistant, and classmate I would be helping prepare future pastors for their work while supporting the academy and the church. I had thought my desire to continue graduate studies was essentially selfish and self-indulgent. Maybe it is, but she convinced me that in following my own deepest longings I also serve others. I applied to the BU School of Theology, to BU’s (secular) graduate school of religion, and to Iliff School of Theology. The BUSTh application was accepted, and I decided to go ahead with it.

The question is far from finally settled, though. I have a long way to go yet, and I am getting increasingly homesick for my family, my friends, and my hometown (Denver). My health continues to be an issue. Thankfully, I don’t have any cognitive impairment from cancer treatment, but Stage IV cancer is “treatable but not curable.” I still have cancer. I still have to get infusions every three weeks and swallow 6 big pink pills a day every other week. My cancer is “stable” for now. No one can say how much longer that will last. I don’t think about cancer constantly anymore. But I never manage to get very far from it.

Last week I attended a meeting where a BU professor came to talk about getting books and articles published. He said anyone who wants a PhD should go ahead and do it. If nothing else, you get 100,000 words you wrote that will always be there. Looking at me, he said there’s no upper age limit for scholarly work. One of our professors is 75, and he has written 13 books, including a massive three-volume set that he started when he was 70. Writing is a way to make a permanent mark on the world. Whatever I write will still be speaking for me after I’m gone.

He was also enthusiastic about the job prospects for people with PhDs. Yes, good jobs in higher education are scarce, but, according to him, private business loves doctors of philosophy. I have heard doctoral studies likened to an extended hazing. The fact that you put in the time, made the effort, jumped over all the hurdles, and stuck with it sets you apart. And, especially with interdisciplinary work, it makes you uniquely able to address real-world problems. To get a doctorate, you have to learn how to write, think and analyze complex ideas. You learn to stand in front of audiences and speak, teach, persuade, and motivate others. These are eminently marketable skills. He told us about a colleague who quit his professor job and got a job with a consulting firm. He’s still writing and publishing academic work, as a sideline, while making vastly more money than BU pays its professors. Most of the other attendees were young people who had all been strongly discouraged from pursuing doctoral studies. There are very few tenure-track positions in academia, and adjunct professors work for less than minimum wage, with no benefits and no job security. They were thrilled to get some encouragement for a change.

I was encouraged too. One purpose of the meeting was to talk about how to position oneself to apply for tenure-track academic appointments. There are conventions that must be followed. I do not want that life, which means I have a lot more latitude in what I research and what I write about.

Right now I’m still writing papers, reports, and this blog. One way I know I’m an ethicist is everything I write comes around to ethics and the local church. (That statement, “ethics and the local church,” is far from simple. It encompasses theories of knowledge, human nature, God, church, society, law, social change, personality, meaning, value, systems theory, embodiment, practice, virtue, and moral formation.) I wrote a paper on liturgy and sacraments last semester. It was about ethics–the ethics of doing liturgy well, and the role of ritual in forming character. I just wrote a report about my research for a study of clergywomen in leadership, and it also ended up being about ethics and the local church.

I had a scan last Thursday. I’ll get the results tomorrow. I will find out whether the cancer is better, worse, or about the same. Except for the first one, in 2011, all my December scans have shown progression. Whenever I’m waiting for scan results I try to maintain a posture of cautious optimism, tempered with a healthy dose of denial. I have learned to consider “stable” a good result and, as far as I’m concerned, even a scan that shows some progression is “stable” if there are no new lesions.  I feel fine. I can function. The cancer is not yet affecting the way my body and mind work. Someday I will find out that the cancer is advancing and there are no more options for trying to control it, but not yet. Not yet.

 

 

 

posted by Amy on Oct 11

On September 27, 2014 I went to the Living Beyond Breast Cancer annual fall conference in Philadelphia. I got a travel grant which waived the registration fee and will reimburse me for my airfare, and I stayed with friends in town, so it was a free trip. Later I learned that the Susan B. Komen Foundation funds the travel grants. I have concerns about Komen, “Big Pink” breast cancer “awareness,” the politicization and commodification of breast cancer, etc., etc., but it was lovely to get a free trip to the conference, so I’m either a hypocrite or a typical human being, fully capable of holding two conflicting convictions at the same time. Or maybe those are two ways of saying the same thing.

The sessions I attended were informative and worthwhile. I met some great people. I reconnected with a seminary classmate who is now also a member of the club no one wants to join. That was a very nice surprise. There were over 500 people there, so it was busy and big. One of the oncologists who spoke specializes in treating young women who have breast cancer. That seems to be an expanding category, and it’s pretty scary. Living Beyond Breast Cancer seems to be an all-around wonderful organization. Their site is chock-full of helpful information. They do seminars all the time. The conference was being live-streamed, and the videos are still available online. I am glad that LBBC exists, and I am grateful for all that they do. The presenters at the conference were top-notch. I’m glad I went.

But I’m kind of crabby about the whole pink ribbon culture, and I’m impatient with the public image of breast cancer. I didn’t realize how touchy I am until another participant innocently asked me if I’m a survivor. I should have just said yes and let it go–she was just trying to make conversation–but the “survivor” label pisses me off. I don’t like the implication that I’m in a “battle” that can be “won.” Some people don’t even consider me a “real” survivor because I have late-stage breast cancer and will presumably succumb to it at some point. In other words, I’ll “lose.” As if I had any power at all to change that. As if I could just cop a positive attitude, close my eyes, nod three times and make it go away. Bah.

Supposedly, breast cancer is a non-political “cause” that everyone can get behind, and everyone understands. Nothing could be further from the truth. Because of the Komen model of “awareness” and “early detection,” as well as the organization’s very flexible thinking about who might be an appropriate partner, the public face of breast cancer is severely distorted. Big Pink wants money any way it can get it. Komen has gone from being “for the cure” to being “for itself.” This is not specific to Komen. Most organizations experience that kind of mission creep. But the marketing of breast cancer makes me angry. To raise money, Big Pink first exaggerates your risk of getting breast cancer, then plays down your risk of dying from it. A one in eight lifetime risk of getting it does not mean one in eight women (and a few men) will get it. (Go to http://www.breastcancer.org/symptoms/understand_bc/risk/understanding for a complete explanation of the “1 in 8″ figure). And early detection turns out to have virtually no effect on overall survival in developed countries. U.S. statistics are a bit hard to track, because of the way breast cancer is classified, but something like 20% to 30% of all people diagnosed and treated at an earlier stage will eventually get to Stage IV, which is almost 100% fatal, and 5% to 10% are Stage IV at the outset. That means at least one-fourth, and maybe far more, people who get breast cancer will die from it. The death rate has started to edge downwards, but that is from better treatments, not early detection. The only thing early detection does is enlarge the amount of time you know you have cancer. Those are not happy, victorious, triumphant, rite-of-passage facts, so they get buried in the avalanche of “awareness” every October.

It isn’t cancer in the breast that kills you. Breasts are not vital organs. It’s when it spreads to distant organs (including the brain) that it becomes deadly. So real “awareness” is not about saving “hooters” or “ta-tas” or “boobies.” It’s about a deadly killer that takes close to 40,000 lives every year in the U.S. and is the number one cause of cancer death worldwide. Many parts of the world don’t even have Tamoxifen. Scratch that. They don’t even have pain medication for people who are dying of cancer. And here in the U.S., poor women, uninsured women, and African-American women all have far worse outcomes than white women with insurance. Breast cancer highlights all the race and class health injustices and disparities that exist today, but nothing you hear in Pinktober is going to remind you of that. The inconvenient truth is that people die from this disease, and no matter how many pink ribbons you wear or pink-themed walks or sleepovers you take part in, that won’t change without science.

Dr. Clifford A. Hudis, who led a session on treatment of metastatic breast cancer at the conference, made the best point of the day. He said the thing that makes this country great is its scientific achievements, and the funding for the National Cancer Institute has not been increased in ten years. Its annual budget is a pitifully small amount–less than we blow through in a few days of bombing Libya or Syria or Iraq or occupying Afghanistan. Cancer affects almost every one of the 330 million people in the U.S. We should be spending a whole lot more money figuring out how to deal with it. Dr. Hudis also said that the cost of a breast cancer drug does not correlate with efficacy or number of side effects or any other drug-related criterion. The number one predictor of what a cancer treatment costs is the year it was approved. We should be investing significant public funding and brain power into hard research and drug development. Breast cancer is a public health issue. It isn’t a “cause.” Getting people to take walks or buy pink tschotskes is pointless and stupid.

One way to look at a gathering like this is, “We may all be different in terms of age, race, social class, type and stage of disease, and so forth, but we all know what it’s like to have breast cancer, and it’s great to have that bond.” I don’t see it that way. In 2006 I went on a week-long, 450 mile bike ride in Colorado called Ride the Rockies. I had no illusions that all 2,000 of us who signed up for it were all alike–one look around proved that was not the case–but it was cool to spend a week riding a bike and camping out with 2,000 other people who thought that was a fun way to spend a week. We all had our own definitions of fun, but we were all riding bicycles along the same route. The “breast cancer journey” isn’t like that. The vendors in the sponsorship area that we had to pass through at the LBBC conference–like running a gauntlet–proved that. No, I don’t need lymphedema sleeves, though it’s nice to know that those who do need them can get pretty ones. No, I don’t want a pink ribbon refrigerator magnet. (I’m not sure anyone was actually selling those, but there was a general impression of trivialized kitsch about some of the booths.) I don’t need a mastectomy bra. And, really, who needs to know about a private, for-profit cancer treatment business that does none of its own research but does engage in quackery and snake oil? We don’t “all know what it’s like to have breast cancer.” Some of us have great doctors and some don’t. Some of us have responded well to treatment and some haven’t. Most have had surgery, chemo, and radiation, but not all. Some of us are doing well and some are not. Breast cancer isn’t even a single illness. It is at least fifteen different diseases, with different characteristics. But it bears repeating: at least one-fourth of the people who get breast cancer will die from it, and not because they missed a mammogram or didn’t have a good attitude, but because there is no cure for metastatic breast cancer.

This is my fourth October since my breast cancer diagnosis. I used to buy the dominant narrative. Heck, I own a “Race for the Cure Team Captain” baseball cap. Now I see that the pink haze obscures the seamy underbelly of for-profit health care, especially pharmaceutical research, and of unequal access to health care. Genentech makes all three of the drugs I’m on right now, and they are very, very expensive. (Genentech didn’t have a booth at the conference, but they did give me a lovely white journal in the goodie bag, and I appreciate both the gift and the fact that their drugs are keeping me alive). But I’m not a “survivor” or a “warrior” or brave or noble or anything. I’m a person who has a disease that far too many people get and far too many people die from.

The last LBBC conference I attended was also in Philadelphia, in the spring of 2013. It was specifically about metastatic breast cancer, and I saw my friend Denise there. She and I met through an online support group for people with our specific subtype of breast cancer. She died not long after that conference, about a year ago. I felt her absence keenly.

 

posted by Amy on Aug 17

Last week I read an article in Mother Jones profiling some of the leading female supporters of the men’s rights movement. Several of them work with people who were abused as children, or with men who feel they have to pay too much child support or have insufficient access to their children. I thought about this article as I followed the Michael Brown case on social media.

In the article, one of the women is quoted as saying there is no such thing as rape culture. She passes the idea off as some kind of mass “rape fantasy” by women who believe they are so sexually desirable that all men want them. This remark exposes a fundamental failure to grasp what rape is.

Rape is not about sex. The rapist is not amorous, he’s angry. He doesn’t desire women, he desires restoration of his own sense of entitlement and mastery. Rape is about control. The rapist sees any woman who dares enter his territory (defined as anywhere he is, including public spaces) as fair game. He can leer at her, jeer, catcall, grope, follow, intimidate, proposition, assault or murder if he chooses. He is an “I,” an agent. She is an “it.” Because she dared take up space, walk, talk, dance, yell, sing, sit, be in his presence, anything that happens is her fault. She is to blame, not he. She asked for it. She shouldn’t have been at that party. She shouldn’t have worn those clothes. She shouldn’t have gone out at night or walked down that side of the street. She provoked him. She’s lying. Boys will be boys.

Rape culture is a culture of control, contempt, domination, and violence. It isn’t about sex, though bodies are its theater of operations and sexuality is one of its tools. And it isn’t just about adult relationships or interactions. Rape culture is an ethos, a worldview. The strong may do as they wish. The weak are prey.

The Twitter hashtag #YesAllWomen that emerged after a rich young white man went on a shooting rampage because he was unable to be a successful “pickup artist” represented an unmasking of rape culture. Not all men rape, but all women are affected by rape culture. And so are all men.

According to one of the women profiled in the article, most violent men were abused by their mothers. That may well be true, but it does nothing to refute feminism or disprove rape culture. Rape is violence, not lust. Feminism is not about allowing the rabbit to start hunting down and eating the wolf. It’s about the lion lying down with the lamb. It’s about ending predation entirely, not switching places. The violent, abusive mother was abused when she was small and helpless. She was objectified, stymied, stultified, negated by someone with power over her. If she doesn’t heal from that, she will take it out on her children, who will, as their mother did, internalize both the victim and the perpetrator. As the saying goes, “hurt people hurt people.”

Feminism, rightly understood, liberates both men and women. It cultivates the agency, efficacy, and humanity of every human being. It is about freedom to be oneself, to occupy space, to move from place to place, to be sassy or shy, bold or timid, fat or thin, gay, straight, male, female, gender nonconforming, black, white, biracial, Asian, Latino/a, or whatever. It’s about walking in the middle of the street with your friend if you want to without interference if you’re not endangering yourself or others. The purpose and function of every human being is to develop, to learn, to love, to create, to be a member of God’s family. Rape culture makes all those capacities and rights contingent on the whim of someone who has more power than you, who has a bullhorn or a gun or fists or a belt. Or a penis.

In the aftermath of the murder of Michael Brown, a young black man, by a white police officer in Ferguson, Missouri on August 9, 2014, my friend Kevin Vetiac wrote in his blog:

Racism killed Michael Brown. Racism that refuses to acknowledge people of color as fully human.  Racism that says people of color are to be humiliated, exploited and kept in their place. Racism that says all black men are dangerous menaces to society who need to be locked up or shot dead. Racism that tells white people to be afraid of all black people everywhere at all times. Racism that makes it OK to shoot first and ask questions later. It is this racism that fuels the American way of life and makes white privilege possible. . . .

I am a person. Do you get that? Do you really get that? I’m fully human just like you. I am not a target.  I am not a dog that can be shot down in the street for no reason. I do not exist to serve you or be subordinate to you in any way so don’t expect me to be submissive to you. I’m going to say that again because you really need to hear this white America. I DO NOT EXIST TO SERVE YOU OR BE SUBORDINATE TO YOU IN ANY WAY. I am made in the image and likeness of God. My blackness is not a curse, it is a blessing.  I will never apologize to you for existing, never.

Kevin is right. And, to a surprisingly great degree, you can substitute “woman” for “black man” and “rape culture” for “racism” in those statements, and they still say something true and profound. Racism and rape culture are essentially the same. Both are based on the premise that some lives, some bodies, matter more than others and that some people, solely by virtue of physical characteristics and/or social location, have the right to exert power over those lesser humans.

U.S. culture automatically gives people who have been assigned the status of “whiteness” advantages, privileges, and immunities over non-whites. That is what is meant by white privilege. A stark example of this is how the presumption of innocence is turned upside down and backwards when either the suspect or the victim is not white. Mike Brown, a black teenager, was unarmed. He had his open hands up in a gesture of surrender when he was gunned down by a white police officer. As Kevin Vetiac said, racism killed him. And Michael Brown is not alone. An astonishing number of black people are routinely killed by white people in this country. And every time it happens, the focus is immediately placed on the character, demeanor, dress, drug habits, and history of the person who was killed. That actually cuts both ways. Mike Brown was about to start post-secondary education, but even though that fact keeps getting repeated, it’s utterly irrelevant. Even if he had just committed a robbery, even if he had just done something violent and heinous, he still did not deserve to be gunned down on the street when he put his hands up and said “Don’t shoot.” If he had been white he would still be alive. I know this because James Holmes, who is white, took weapons of mass destruction into a movie theater and committed murder and mayhem. He was taken into custody alive and unharmed. And Jared Lee Loughner, who is white, and who shot a Congresswoman in the head and killed six other people, was likewise taken alive.

Rape culture decrees that every woman’s (and some men’s) bodily integrity and personal safety are contingent upon the will of someone else. White men do not live with this reality. Not all men are rapists, but all men live in a society where every woman knows this fact. Rape culture, like racism, gives people in dominant positions a license to negate the humanity of those they perceive to be subordinate, and to use and abuse the bodies of those subordinate, objectified people. This domination occurs along a continuum of aggressions and demands for subservience. Strangers tell women on the bus to “smile.” White police officers intimidate and bully black people just because they can. Security officers keep an especially close eye on black shoppers. And men feel entitled to control women, even complete strangers.

Although racism and rape culture are expressed in individual behaviors, they are not solely personal failings or choices. Racist, misogynist, and destructive behaviors are manifestations of the predatory character of the culture as a whole. If you step back you can see that racism, sexism, misogyny, homophobia, domestic violence, militarism, religious intolerance, mass incarceration, and environmental destruction all emanate from the same ethos of objectification and negation. Erich Fromm called it “necrophilia,” or love of death. The desire to control is the desire to extinguish all spontaneity, creativity, unpredictability, rebellion, and differentness. It is, in essence, the desire to kill everything.

The solution is conscientization, a robust word bequeathed to us by the brilliant Brazilian educator Paolo Freire. It means waking up, becoming aware, reclaiming one’s dignity, agency, and personal integrity. It means listening to oppressed people and recognizing them as fully human. And it means becoming aware that all of us have been shaped by the dominant culture and we all carry oppression, racism, and misogyny inside us. All of us are racist and sexist, even those who are targets of the racism or sexism of others. And all oppressors are diminished, limited, and damaged by oppressive systems. Conscientization means learning to act out of love instead of fear. It means relating to oneself and others in new, nonviolent ways. Conscientization occurs as a dialectical, communal process of acting, reflecting, and acting with and for others. Anyone who wants to overcome embedded racism and misogyny must enter into loving, authentic, dialogical relationships with others who are on the same quest. Each teacher is a learner, and each learner teaches. Conscientization is humanization and liberation.

posted by Amy on Jul 24

There’s a woman with whom I do not have a direct relationship, but who is important to people who are important to me. Last fall I noticed she had “unfriended” me on Facebook, and I sent her a text message asking if there was anything we needed to talk about. She replied, “I just don’t have anything to say to you.” That was a little hurtful, but I thought about it and answered honestly, “I have felt that way about you. Eventually my heart softened.” Not long after that I got a friend request from her, and I accepted it. Then a couple of months ago I noticed she had done it again. I haven’t reached out to her this time, and don’t plan to. I may very well have committed some offense–I rub a lot of people the wrong way, especially her–but since I have no idea what that might be, and I still haven’t been let in on the secret, I’m going to leave it at that. We may never see each other again, and if we do we can deal with it in person (or not).

She and I had a pretty good run right after my cancer diagnosis. I know it’s awkward that I’m still alive over three years later, without a known expiration date. It’s easy to bury the hatchet and be nice to someone who’s not long for this world. I don’t think that means her gestures of love, concern, and caring were insincere. I’m sure they were genuine, and I appreciate it. But practices that are useful for acute situations don’t always hold up for the long haul.

I don’t think it’s compassion fatigue. I think it’s bewilderment. I know the feeling. This liminal space can feel like a prison. Later, when I’m likely to be trapped in a failing body that offers fewer and fewer physical and mental capabilities, it will be even worse. Cancer stories used to be about suffering and dying, or about “beating” the cancer and returning to normal. This business of people hanging around for years, often with no visible signs of their illness, is new. We don’t have customs for it. And it doesn’t seem to matter how many times I explain that my cancer is incurable and I’ll be in treatment for the rest of my life. People just don’t get it.

Not long after my cancer diagnosis I figured out that it’s best to stay in the now and take things as they come. It’s a great life skill, and I recommend it highly, especially in the face of death. Denial, a much-maligned but highly useful life skill, plays a huge role too. It’s really better if I just don’t think about it. But staying in the now and living in denial have some distinct limitations. I keep asking myself the same questions about what I want and what I should be doing with my time: Should I keep working on the PhD? (So far, the answer is still yes.) Should I date? (That answer varies. Actually, it varied before I got cancer. It’s just that much more complicated now.) Should I get a pet? (Similar to the dating question: pros and cons. In theory the companionship would be a plus. In practice there are drawbacks.) Should I pursue ordination? (Again, so far, so good.)

But sometimes it all comes crashing down on me and I get depressed. I should make the most of each passing day, hour, minute. But what the hell does that mean? And what’s the point of striving? What matters most? And does any of it really matter? A hundred years from now I’ll be forgotten. Biologically, I’ve done my part with four birth children. That could all come to naught (biologically) too–so far there are no grandchildren or any prospects for them. Beyond passing on genes, I’ll never know if I’ve accomplished anything of lasting value, even indirectly. I’ve always wanted to make a positive difference in the world–whatever that means. Chances are, knitting dishcloths, reading my Twitter feed (over 2,000 followers!) and watching Treme reruns all day are not the best way to do that.

 

posted by Amy on Jun 23

On Friday, June 20, 2014 I participated in a pilgrimage conducted by the Rocky Mountain Annual Conference of the United Methodist Church. Early that morning I and approximately 700 other United Methodists loaded into buses in Pueblo, Colorado and made the journey to the Sand Creek Massacre National Historic Site outside of Eads, Colorado. We went at the invitation of descendants of the people who were attacked without warning before dawn on November 29, 1864. The descendants all know that the Methodist Episcopal Church (predecessor to the United Methodist Church) had an especially significant, and especially shameful, role both in the massacre itself and in the social and historical context out of which the atrocity arose. Most Methodists don’t.

John Evans, the second territorial governor for Colorado, was a Methodist. He believed the “Indian problem” needed a final solution not unlike Hitler’s “Final Solution” for Jews. John Chivington, the leader of the attack, was a Methodist minister. He was the Presiding Elder for the fledgling Methodist congregations that were founded almost simultaneously with the gold rush into the Colorado area that began in 1858. Chivington and Evans were among the first trustees of “First Methodist Episcopal Church of Denver,” which was organized on July 22, 1863. By 1888, this congregation became known as Trinity United Methodist Church, and is still in existence. Chivington was politically ambitious, and he held Indians in extreme contempt. He wanted a brilliant military victory so he could become a general and then a United States Senator. When ordering his troops to kill and scalp everyone in the encampment on Sand Creek, he famously said, “Nits make lice.”

Our bishop, Elaine Stanovsky, has been working diligently since her appointment in 2009 to educate herself and others about Sand Creek. She began blogging about the pilgrimage on January 15, 2014. Here from her first post is her succinct, brutally honest framing of the issues:

The 150th anniversary of the Sand Creek Massacre falls in 2014. On November 29, 1864 Methodist leaders, committed to living in faithful obedience to Jesus Christ, wielding government and military power, planned and led the slaughter of nearly 200 Cheyenne and Arapaho people peacefully encamped where they were promised they would be safe. Many of the victims were women, children and the elderly. For some descendants of the massacre the word “Methodist” means only massacre of innocents. This year we have an opportunity to change that and to enter into a relationship of honor and respect with people who know us only as the source of their scars.

This is a history of atrocity; a history that has been hotly debated for 150 years, despite definitive findings by congressional and military investigations; a history that has been largely untaught in our schools, lost from the consciousness of the church, and distorted in its telling. It is a history in which respected Christian leaders failed utterly to uphold God’s love for creation and Jesus’ promise of abundant life. It is a history that casts a long shadow of doubt that people who bear the name “Christian” or “Methodist” can be trusted to cherish and protect life at all.

[You can find the blog at http://www.mountainskyumc.org/sand-creek-massacre-journey/previous/2. For some reason my software is no longer allowing me to create links to URLs, but I highly recommend that you visit.]

I prepared for the trip by reading three books recommended by Bishop Elaine. My bachelor’s degree is in history, and I welcomed the opportunity to delve deeply into the history of the massacre itself, the lives of some of the key witnesses (especially George Bent, one of four children of William Bent, a white man, and Owl Woman, a daughter of The Cheyenne Keeper of the Sacred Arrows), and the “back story” behind the 2008 establishment of the National Park Service Historic Site. A large percentage of the time allotted to Annual Conference was devoted to educating the attendees about all of this context. A movie about the massacre was shown on each of the thirteen buses that traveled from Pueblo to Eads. Each bus was accompanied by either a Cheyenne or Arapaho person or a historian whose role was to teach and to answer questions. We also watched a National Park Service video at the movie theater in Eads, and had an opportunity to talk to a Park Service representative.

Until last week I had never made the connection between the Civil War and the Indian Wars. Both were caused by the relentless westward expansion of white settlers. The Civil War arose from arguments about whether or not new territories would allow slavery. Chivington was a hero of the battle of Glorietta Pass, where the Union Army stopped the advance of the Confederate army. Sand Creek is listed on a Civil War monument that was erected in 1909 on the grounds of the Colorado State Capitol. The 1950s-era historical marker at the site of the massacre describes it as a “battle.” As the Civil War ended, the U.S. Army was able to dedicate more military resources to protecting wagon trains and white settlements, and to attacking Indians. Sand Creek was the most famous atrocity, but by no means the only one. Four years later, George Armstrong Custer’s Seventh Cavalry attacked a Cheyenne encampment at Washita, killing Black Elk, one of the few “peace chiefs” who survived the Sand Creek Massacre. At every step of this slow-motion genocide, Methodists played significant roles.

The buses took pilgrims to the site in three groups. It was quite hot by the time I got off my bus. Pastors were available to impose ashes on anyone who wanted them, on forehead or hand, as we do on Ash Wednesday, but in the shape of a circle rather than a cross. We also each received a “prayer card” to use as an aid to contemplation or prayer. Each prayer card was different, and we were invited to trade them with other pilgrims. I got a smudge of ashes on my forehead and the first of several prayer cards.

In the heat and wind I walked out to the end of the trail, stopping frequently to look and listen. The large leaves of cottonwood trees blowing in the stiff breeze rattled together loudly. Although it seemed barren and desolate at first, the land actually teemed with life. Little lizards darted across the path, sometimes getting confused about which way they should go to escape all the tramping feet. Birds called from the scrubby brush on either side of the path. Cacti sported large yellow blooms. Dry-looking grass, almost the same color as the sandy soil, grew in clumps all around. Cottonwoods marked the dry creek beds, where their deep roots found underground springs. Since I had done so much background reading, I didn’t need to spend much time with the informational markers along the trail. Several times I swapped prayer cards with other people. When I got to the end of the trail, after standing awhile in silence, I began chanting “Holy God, holy and mighty, holy immortal One have mercy upon us.” Tears rolled down my cheeks as I chanted, and the hot wind dried them. The guide on our bus had told us that her Arapaho spirits don’t speak English, and four octogenarians are the only fluent speakers living on the Southern Arapaho reservation in Oklahoma. I thought, “The spirits don’t speak English, but surely they understand tears, and ‘sighs too deep for words.’” I fervently hoped that they did.

At dinner that night the descendants were asked to reflect on the day. They thanked us for what we had done. They said it helped them. They said it gave them hope. Some said they had found peace. Some said they felt that healing could now begin. I was incredibly moved by their graciousness, gentleness, sincerity, and dignity. Tears kept welling up in my eyes.

There is no way to make amends for the Sand Creek Massacre. It happened because white settlers invaded Indian lands, killed or drove off the buffalo, put up fences, and murdered Indians. Some died quickly by shooting and infectious diseases. Others died more slowly from starvation, whiskey, poverty, and cultural genocide. It was by no means a one-way street. Indians raided, killed, scalped, and terrorized whites. But they were defending their homeland and their way of life. Before white people started taking over land and other resources, relations between the whites and the Cheyenne/Arapaho people had been fairly peaceful. And, of course, the whites had, as Jared Diamond puts it, “guns, germs and steel,” as well as a lot more people.

I, a white person, was born in Denver less than 100 years after the massacre. I went to public schools that taught about “Manifest Destiny” without interrogating its racist, genocidal foundations and its roots in the Catholic Church’s “discovery doctrine,” which unilaterally declared it lawful for Europeans to steal any land not already occupied by “civilized” people, and to slaughter or enslave any “savages.” Cowboy and Indian movies perpetuated the stereotypes of stupid, savage, murderous Indians and their brave, innocent white victims. Nobody told the Indians’ side of the story.

We can’t forge a new path forward without knowing where we’ve been. The descendants were not seeking apologies, and they emphasized that they were not seeking to assign blame or make us ashamed. But they wanted us to know their story. They also wanted us to know that, despite the best efforts of our white ancestors, they survived and they are still here. They spoke of their strength and resilience as a people. They seek recognition as people of equal dignity, people of sacred worth. They want sovereignty. I want that for them too, and I agree that they deserve it.

But they’ve lost so much. I’m especially sorrowful about the impending extinction of the Arapaho language. Language is not just a “tube for communication.” It carries lifeways and culture. It would be tragic to lose the knowledge, wisdom, and goodness embedded in Native ways of life and perspectives on what’s really real and what really matters.

No culture is all good or all bad, and all cultures adapt to specific circumstances and contexts. But we heirs of the European/Enlightenment project of conquering and transforming Creation, treating it as a lifeless machine, have much to learn from peoples who believe that everything the Creator made is alive. As Moses said to the Israelites before they crossed into the Promised Land, “Today I have set before you life and death, blessings and curses. Choose life so that you and your descendants may live.” (Deut 30:19) Our Indian brothers and sisters can help us choose life, for humans, for other creatures, and for the Earth herself. I pray that we put aside our hubris, cure our amnesia, and decide, finally, to choose life.

 

 

 

 

 

 

posted by Amy on Jun 12

I recently got into a pissing contest on Twitter about cancer and cancer treatment. I’m not sure how it started, but some guy was fomenting two of the most common cancer myths: that cancer is caused by having an overly-acidic body from eating the wrong foods and that cancer “feeds on sugar” and you can prevent or cure it by cutting back on sugar. On his profile, and in some of his comments, he completed his cancer conspiracy trifecta with the claim that chemo is nothing but a pharmaceutical company conspiracy and kills people instead of helping them. Twitter is the worst possible place for nuanced and detailed attempts at persuasion, and I doubt anybody ever gets persuaded, but I sometimes wade into arguments anyway. It must be fun for me.

I absolutely do believe we eat too much sugar, other sweeteners, and artificial sweeteners in the U.S. today. Something like 80% of all processed food has added sweeteners. That can’t be good. But the “cancer feeds on sugar” myth is easily busted. Every cell in your body feeds on glucose, which is what the body converts food into. Eating no carbohydrates at all can force the body to burn fat and muscle for energy. That is actually a tested treatment for severe childhood epilepsy, and it used to be the only thing that could be done about Type 1 diabetes (and not for long–you have to have insulin to stay alive.) But humans evolved as omnivores eating a predominately plant-based diet. Plants have carbohydrates, which get converted to glucose in the body. The Twitter guy said somebody who got a Nobel prize in the 1930s “proved” his sugar theory. Thirty seconds on Google was enough to show that the Nobel laureate had done no such thing.

The acid/alkaline hypothesis is just as bogus. You can influence the Ph of your urine (which is how the quacks test your “body”) but the natural acidity of blood doesn’t budge much, and there’s no way to digest food without the very strong stomach acid that we all have. Again, it’s a fine idea to eat lots of fruits, vegetables, and whole grains. The fiber, vitamins, minerals, water, and phytates in those foods are good for you. Have at it. But you stand a good chance of getting cancer anyway, and if you do, you should go see a real doctor and follow her advice.

They used to think cancer was one disease that affected different body parts. Cancer is not one single disease. In fact, breast cancer isn’t a single disease. There are at least fifteen different subtypes of breast cancer, for example. That’s true of every other kind of cancer that I’ve read about. Cancer is caused by a combination of heredity, epigenetic changes, and environment. Cancer starts with gene mutations, and it’s very clever about continuing to mutate and outsmart treatments. Learning about how cancer supports itself, so to speak, gives researchers ideas about designing treatments that can interrupt or reverse those processes. The more it’s researched, in finer and finer detail, the more science is able to figure out exactly what is going on at the cellular level. Since each human being is unique, then everyone’s cancer is also unique. Eventually, cancer treatment will be customized to each person’s specific disease. That is a million miles in the opposite direction from saying [__fill in the blank__] cures cancer or [__fill in the blank__] causes it.

In the meantime, we have to make do with what we have. The standard treatment for breast cancer is “slash, burn and poison” (surgery, radiation, and chemo), plus, since the discovery of Tamoxifen, endocrine therapy for people whose breast cancer is hormone-receptor positive. That’s not because cancer doctors are all sadists, it’s because the evidence shows that people who get those treatments live longer than those who don’t. It doesn’t always work. There are always side effects, and some of them are debilitating. There are also all the usual hazards of being in hospitals–infections, mistakes, etc. But that is no reason to reject the whole enterprise.

The reason we haven’t won the “war on cancer” is the opponent is a shape-shifter, and is incredibly complex. It’s not because science is hiding anything. The woman who leads my support group sends us articles from peer-reviewed medical journals. All you have to do to believe in this complexity, and in the sincerity of the people publishing those articles, is to read a few of them. This is tricky stuff, folks, and highly technical. These people are actual scientists who base their work on facts, not folklore. The competition for research money is fierce, so real cancer researchers are very, very careful in designing experiments and reporting on them, because they are being very carefully watched. It is idiotic to think anything is being suppressed.

Another fallacy that comes up pretty often is the “personal exceptionalism” fallacy. A newly-diagnosed member of my online support group said she was thinking of skipping chemo and radiation. The group is for people who have a subtype of breast cancer that used to be the “bad kind.” Before there were targeted treatments for it, it was very aggressive and deadly. It metastasizes much more readily than other types, even when it’s diagnosed and treated at early stages. The standard of care now is to give chemotherapy plus a targeted treatment. The targeted treatment is not chemo, and it’s not approved to be given all by itself until after a course of chemo has been given. She said she was contemplating this approach because she’s “fiercely independent.” I told her that her cancer is more fiercely independent than she is. I didn’t tell her she’s being an idiot, because that’s rude. But she’s being an idiot.

The most ridiculous thing is not trusting science but trusting some quack with a website and a Paypal account. People accuse real doctors and researchers of being self-interested and untrustworthy, but are perfectly willing to believe the “testimonials” that snake-oil salesmen write to convince people to buy their potions. Even if somebody’s Aunt Edna actually did go into permanent remission after she took some quack’s advice or bought the special vitamins, that’s still not proof of anything. As they say, the plural of anecdote is not evidence.

 

 

posted by Amy on Jun 9

My scan results were, as usual, “mixed.” That can be hard to take, especially the first few times it happens. After some practice, I have decided that the thing I care about most is whether or not there are new lesions. To me, no new lesions, along with not much new at known sites, translates to “stable.” Stable is good. With metastatic cancer, most of the time changes are for the worse. So my scan shows no new lesions, and everything else is either slightly better or slightly worse, which averages out to “stable.”

My oncologist agrees, so for now I’ll stay on the same treatment. I have the information. It’s good news (or at least it’s not bad news). I feel fine physically. And my anxiety level is dropping.

I’m lucky. I’m 60, not 30. I have kids, and they are all adults. They have college degrees. They have each other. They will be OK. I have known people who died from cancer who were not so lucky.

There’s really no point in comparing levels of misfortune and suffering, but everyone seems to do it anyway. My niece told me her father (my brother) justified his treatment of her and her brother by saying he had it worse as a child. Even if that’s true (and how can anyone validly judge another person’s suffering?) what difference does that make? If what he did to them was wrong, then it’s wrong. “Let me tell you what real suffering is like” is a nonstarter.

We all have challenges, misfortunes, setbacks, pain, and suffering. We are all going to die. No one’s life is comparable to anyone else’s. But having metastatic cancer makes it impossible to deny that life truly is not fair. I live in Boston and I have great health insurance. I get state-of-the art medical care, with the newest, best drugs for my disease. Millions of people with cancer worldwide don’t even get pain medication to ease their suffering, never mind treatments that will give them more time with their children, more days of living. That’s not fair.

I’m lucky that I’m able to respond to this disease optimally (under the existing state of knowledge), but I’m terribly unlucky anyway, because I have it. A couple of weeks ago two Facebook friends posted a hoax “article” about how “John” Hopkins had finally revealed the truth about cancer. One of the people who posted it said, “Do this; you’ll live longer.”  Some of the “secrets” were pure nonsense, and the rest was the usual good advice about how to stay healthy–eat more fruits and vegetables and less meat, get some exercise, control stress, etc. Only I’ve always done all those things, and I got cancer anyway. The friend who was pushing that nostrum does none of those things and is obese, sedentary, anxious, depressed, and cancer-free.

I usually end on an positive note. I really am happy about my scan results. I can go back to paying attention to other things that I find more interesting and less scary. Death still rides around on my shoulder, whispering in my ear, but at the moment we have a cease fire.

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