Archive for the ‘Uncategorized’ Category

posted by Amy on Oct 31

I decided I couldn’t let “Pinktober” go by without commenting.

First, I got my scan results yesterday. This scan unambiguously shows significant improvement. In fact, most of the cancer is gone, and what’s left is smaller, less dense, and less active. I’ve had a lot of scans, and the week I get one is always tough, especially the time between having it done and finding out what it shows. The first scan, almost four years ago, was great. Having such a positive result right out of the gate made me hope I might be one of the lucky few who get a permanent remission. That hope was dashed with the next scan, and I had to learn to like phrases like “stable” and “no new lesions.” But I’ve been lucky. Even the scans with mixed results usually also showed no new lesions, and I decided that was my personal criterion for calling them “stable.” My particular breast cancer subtype is normally very aggressive. Before targeted treatments were developed for it, it was “the bad kind.” Now, at least in my case, it’s pretty lazy and slow-moving. If a scan is “stable” and I have a decent quality of life, then I can live with it.

I’m going to stay on this regimen for three more months or until the side effects become intolerable. I got another treatment yesterday, and I don’t feel too bad. Knowing it’s working makes it much easier to conclude that the side effects are worth it.

But it’s “Breast Cancer Awareness Month,” and I have opinions. One aspect of it that doesn’t get discussed much is how it dwarfs other cancers. Did you know September is Ovarian Cancer Awareness month, and the ribbon color is teal? Not many people do.

The whole idea that we’re going to beat cancer with “awareness” is ridiculous. A few years ago Nancy Brinker, who was the CEO of the Susan B. Komen Foundation, the biggest of the “Big Pink” organizations, said she didn’t think the cure for breast cancer would come from a laboratory. That’s so patently ridiculous it doesn’t even require a response. Yet she has a big megaphone, and people listen to her. People whose lives are marred by other types of cancer feel left out. I don’t remember the source, but I once ran across someone complaining that she wished she had breast cancer, because it’s pink and sexy and popular. Thanks to Big Pink, breast cancer “survivors” get all the attention. Also thanks to Big Pink, people think we’re winning the “war” on this kind of cancer. You hear statistics about five-year survival rates in excess of 90%. That’s true but completely irrelevant. That’s because we’re spending billions of dollars screening millions of healthy women and finding it sooner. Breast cancer can come back in 6, 10, even 20 or more years, no matter how early it was detected and treated, and when it comes back it’s usually stage iv, which is incurable and fatal. People even confuse mammograms with “prevention.” Again, just think about that. It’s stupid.

We’re going to beat cancer–all kinds of cancer–with scientific research. The US is in the throes of forty years of anti-government ideology, where supposedly the government can’t do anything right and the magic market will fix everything. The budget for the National Cancer Institute hasn’t been increased in 11 years, which means it’s actually shrinking. Yet it was NCI that found an anti-cancer agent they named Taxol, which used to be made from the bark of the Pacific Yew tree. It’s now called Paclitaxel, and the original form of the drug was given the “popular” name of Taxol. Abraxane, which is Paclitaxel in a different suspension, in combination with two targeted therapies, is the drug that’s beating back my cancer right now. “Private” industry (and our for-profit health care system) has made billions of dollars on a discovery that we, the people initially made. There are many, many other examples, from every sector of the economy. The people who keep selling the idea that “big government” is messing everything up are lying. Government is how people collectively deal with issues–such as public health–that affect all of us and can’t be effectively or efficiently managed with private effort.

I’ll venture a guess that every single family in this country has lost a loved one to some kind of cancer. With a few notable exceptions, we have not yet won Nixon’s “war on cancer.” Instead of entering races or buying color-coded stuff or going for long walks, we should be putting more money into research, both individually and collectively. We spend under $5 billion per year on the NCI, about $15 per person. That’s ridiculous.

Finally, tomorrow is All Saints Day. In my religious tradition, it’s a time to recognize the “saints” in our lives, living or no longer with us. I don’t have a very detailed idea of what happens to us after death, but I think God is Love, and love never dies. Even when I thought I didn’t believe in God at all, I noticed what the Celts called “thin places,” where the boundary between our world and the next seems more permeable than usual. And, however you explain it or whatever you call it, loving beings–saints–make enduring, life-giving marks on those around them. Tonight I’m going to visualize all the loving, nurturing, kind souls I’ve known (including my dogs. . . .) and thank them for being.


posted by Amy on Oct 18

I had chemo 10 days ago. Today was the first day I felt “normal:” not too many side effects, optimistic, energetic, able to imagine actually accomplishing something. It was a good day. And I got some things done that have been hanging over my head for some time.

I get chemo every 21 days. Even if the next 11 or 12 days are high-energy, feel-good days, that still means nearly half of the time I’m operating at no better than 50% of what used to be normal.

I’ve been continuously undergoing cancer treatment since I was diagnosed in May of 2011, but not all treatments are equal. The one I’m on now is hard for me. I’m doing it in hopes of a payoff. I hope it will knock the cancer back to a level where I can maintain control with two antibody drugs that I tolerate much more easily. It’s kind of a “tough love” ploy. I want the cancer to know who’s boss. But maybe that’s what the cancer wants too. It’ll be interesting to see which of us is right. I’ll get a scan in 10 days and find out a couple of days later.

I am not “fighting” cancer. I’m trying to find some degree of mutual coexistence. Obviously, I would prefer for it to go away and leave me alone, and let me have a normal lifespan. But my mom died (in an accident) at the age of 50 and my dad died four years later at the age of 53, so what’s a normal lifespan? I’m 61. Every year that I manage to stay alive takes me just a bit beyond “too young to die.” Still, I have things I want to get done first. That PhD, for one thing. And you can bet that if I do manage to stay alive and jump through all the hoops I will absolutely send out a press release. Thank you, Boston University School of Theology, for giving me this opportunity. We’re both going to get a lot of positive attention if I manage to pull it off.

I really, really hope the scan shows a good response, because the last three months have been among the toughest since I was diagnosed. Pretty much everything has been hard, and chemo is a big contributor to the difficulty. I am going all in for a minor miracle. I realize it’s Quixotic. But really, what have I got to lose?



posted by Amy on Oct 16

I’ve been trying all week to do some work for my research fellowship. I’m supposed to contact potential funders about helping study leadership in women-led and “non-dominant” Protestant congregations. I feel strongly that this is a worthwhile project and that we have designed it well. I spent all last year wading through leadership studies. Very few say anything about the identities of the people and groups being studied. Most seem to assume that there is a “generic” human being and that “leadership” is something “objective.” Of course, this “generic” human is a straight white man. Our study recognizes that leadership happens in all human enterprises, and that a religious organization, especially in a minority, immigrant, under-resourced, or non-heterosexual community probably differs substantially from a business enterprise. It’s important to study how leadership takes place in “marginal” communities among “non-dominant” groups. I believe that with all my heart, and I’m trying to frame these ideas in bright, punchy ways that clearly fit into the missions of the foundations we’ve decided to approach.

But I’m having trouble getting these proposals done. One reason for that is, despite a year of intense study, I don’t think I know nearly enough about this field. Another reason is fear of failure. This is very important to my boss, and I don’t want to screw it up.

The other reason is it’s October.

I used to love October, especially in Denver. The light is beautiful. The sky is beautiful. The days are warm and the nights are cool. But my father died unexpectedly from a massive heart attack on October 16, 1980. He had just moved back to Denver that year, and we had just started rebuilding our relationship. He attended my swearing-in as a lawyer in April of that year. That was the last time I saw him.

Then I got metastatic breast cancer and learned to dread “Breast Cancer Awareness Month.” I’ve talked about that before. Unfortunately, things haven’t gotten a lot better. There’s a new book–by a breast surgeon no less–that claims breast cancer has a 90% cure rate. Other recent articles and publications say the same thing. That’s an old trick, and it’s highly misleading. The five year survival rate may be 90% or even higher, but that statistic is meaningless. Breast cancer can recur five, ten, fifteen or more years after the initial diagnosis, and that happens to around 30% of people whose breast cancer is diagnosed and treated at an early stage. In addition, up to 10% of breast cancer cases are stage 4 at diagnosis. No matter how you get there–via recurrence or from the get-go, stage 4 breast cancer is incurable. Each case is different, but half the people with a stage 4 breast cancer diagnosis are dead within 33 months, and only one-fifth are still alive five years out.  (This is better than many other cancers. I’ll grant that. But it ain’t a pretty pink success story either.)

I try not to let that get to me. I try to live in the moment, seize the day, focus on what I can do and not worry about what I can’t. But I have gone from someone who hardly ever got sick and who didn’t even have a “preferred pharmacy” to feeling at least a little unwell for some part of almost every day, taking multiple drugs to counteract the side effects of the drugs that are keeping me alive, and having plans derailed by fatigue, nausea, pain, or some combination. Usually I can tough it out. Usually it’s still not all that bad. But sometimes it gets to me.

October is still beautiful, but it also reminds me that winter is coming.



posted by Amy on Sep 22

Last Friday I went to Philadelphia to attend a memorial service on Saturday. I stayed until today (Tuesday). Dear friends who have been unfailingly kind, loving, and hospitable to me let me stay with them. The memorial service was beautiful, like the loved one who died, and I’m glad I was able to be there.

Last night two other guests arrived. One is the wife of a cousin of one of my hosts, and the other is her friend. I don’t expect ever to see either of them again. We had dinner together last night and talked awhile. It was pleasant.

This morning I was making coffee in my friends’ kitchen when the cousin-in-law came in. She barged right over to make herself some toast a couple of feet from where I was working. I was wearing a knitted turban over my bald head. She said, “You seem to have some kind of medical hair loss.” I said, “Um-hmm” and kept making coffee. She said, “My husband had chemo.” I didn’t say anything. She said, “I’m sorry if I offended you.”

That’s what I dislike about chemo that causes hair loss. Some people think it gives them a license to ask personal questions, regardless of any relationship or nonrelationship we might have. And what I dislike about the nosy stranger’s response to my “um-hmm” is that “I’m sorry if you were offended” is a nonapology. A real apology would be, “That was rude and inconsiderate. I’m sorry I behaved boorishly.” By implying that I caused the problem, she tried to shift her discomfort to me. If she had let me make coffee in peace she could have avoided the whole mess.

It may seem incongruous that I willingly disclose all kinds of personal information on this blog, where anybody with an internet connection can get it, but a snoopy in-person encounter bugs me. But it does. I have no control over what people think or say, but I don’t have to dance to anyone else’s tune.



posted by Amy on Aug 20

Attachment disordered people often have eating disorders. Some of them are sugar addicts. Some are overweight. Some work out obsessively. Some become fixated on the “purity” of what they ingest. Some hoard food. Many keep trying reducing diets and regaining all the weight they lost after the diets inevitably fail. Some either overeat or forget to eat when they are under additional stress. Many, including me, cycle through some combination of those and other food addictions.

I am attachment disordered. I have been healing from it, slowly, for about thirty years. But I periodically seek counseling to help me overcome plateaus or roadblocks. In my most recent counseling relationship, I figured out that I simply can’t tolerate feeling hungry, and I connected that to my insecure attachment. Once I had that insight, I began to play, gently, with not doing anything right away when I notice hunger pangs. It’s not an emergency. There is no tiger. I also started experimenting with whether my hunger can be satisfied with less food: one slice of toast and one egg instead of two of each; half as much cereal; smaller portions (in smaller dishes.) And, when I remember to do it, I try to be more mindful when I eat–saying grace, deliberately slowing down my chewing and noticing how the food looks, tastes, and smells.

There’s no “discipline” in this. I didn’t tell myself I “have” to eat smaller portions, or wait awhile to eat after I notice I’m hungry, or eat mindfully. I have no “forbidden” foods. The key was noticing that for me, hunger triggers a gut-level and largely unconscious sense of impending disaster. Once I became aware of that, I could deliberately choose to tell myself new stories about what’s going on. It was never a “weight loss plan.” It was an effort to shore up a weak spot in my development. It’s the only change I made, yet over a period of four or five months I began to shed some excess body fat.

People heal from attachment disorder through “corrective emotional experiences.” I believe that Twelve Step recovery programs heal attachment disorder (which I believe is the cause of addictive behaviors) by helping people become attached to a Higher Power and to their sponsors. Over time, this builds Basic Trust and helps one come to have compassion and empathy, for oneself and for others. My food issues come from insecurity and distrust. I don’t know specifically what caused that, but I don’t need to know.

Part of the inspiration for this post was a question raised by a clergy colleague. He said a women’s group in his church wants to do a book study on a “Christian weight loss” book that he thought was problematic. I did a quick search on Google and again on a religious book website. I found many health, fitness, and weight control books, but they all seemed to be in the “What Would Jesus Eat” or “Pray Away All Your Problems” categories, which I find theologically and psychologically suspect.

But I do think small groups and spirituality can help people become healthier. Humans are inescapably social. Our self-concept and our behavior are formed in relation to others. Further, the human mind is not separate from the body. What we eat, how we eat, and when or why we eat is part of complex feedback loops influenced by our hormones, our body chemistry, and our personal (social) history. Whatever the current state of your mind and body, it is a system in homeostasis. The way you are right now “functions” in some sense. For example, the vast majority of morbidly obese people have a history of childhood incest. What better way to protect one’s body from unwanted attention and touch than to encase it in a protective layer of fat? Simply eliminating the excess weight, such as through bariatric surgery, doesn’t do anything to heal that, so it will fail.

It could be argued that the way to motivate people to heal is for them to have an easily quantifiable objective: Get married within a year; lose four pounds a month for a year; run a marathon. I have gotten a lot done with setting goals and planning ways to meet them. But since that approach didn’t get at the reasons I was judging myself and punishing myself, there was no happiness or satisfaction in attaining a goal. Obsessive, compulsive, and/or addictive behaviors took over in all the areas of my life that I wanted to improve.

Christianity teaches that the highest law is to love God and neighbor. If I were evaluating a small group curriculum, I think that would be my main criterion. If I could find a “Christian” weight loss book that helped people love God, themselves, and other people more or better, I’d probably approve it. But I might focus more on how the group itself functions. Do the members get to know one another intimately? Do the things they do together in their group help them feel more connected with God and with one another? Does the group help its members experience a more abundant life?


posted by Amy on Aug 16

In mid-July my oncologist and I agreed I should stop taking the oral chemo I had been on since the preceding December and go back on Abraxane, which I took when I was first diagnosed, and which, along with an antibody drug, cured my liver metastases. We made this decision hoping that the small amount of active cancer in my body can be cleared away in three to six months. If that happens, then I can stay stable and healthy for a long time with just two antibody drugs, which I tolerate very well and which have few side effects. We are acting from a position of strength. Arguably, I was sufficiently stable on the oral chemo that I could have stayed on it.

Abraxane causes hair loss. This time around my hair loss was quite rapid. One day after the second infusion (three weeks and one day after the first infusion) I had my head shaved because I was tired of molting clumps of hair wherever I went.

People tend to think you’re “in remission” if you have hair and you’re “back on chemo” if you suddenly go bald. I overheard a cousin telling someone my cancer had come back. In fact, it never went away. I’ve been under treatment constantly since June, 2011. I have been on at least one antibody drug the whole time and on some other kind of medication in addition to antibodies for all but six months. I get infusions every three weeks, and PET scans about every three months.

Most likely, I will continue to be under treatment until my cancer becomes uncontrollable (or until I die from some other cause.) Stage IV cancer is (still) incurable. The goal of treatment is to control it as well as possible for as long as possible with the best quality of life possible. I’ve had this “incurable but treatable” illness for over four years, and so far I’m a poster child for the new “cancer as a chronic illness” phenomenon.

Maybe there should be another term for it. At the moment “Stage IV” is synonymous with “terminal,” “end stage,” and “advanced.” Once a solid tumor cancer spreads to other parts of the body that’s the end of the line. There’s no “Stage V.” But there’s an obvious difference between someone like me, who’s still basically healthy (except for the cancer. . . ) and someone in hospice a few weeks or months before she dies.

Although I’m doing well physically right now, I’ve seen a lot of people with breast cancer go from “doing well” to “it’s all over” in relatively short order. There is no way to predict when and how I’ll make that transition. Just don’t make any assumptions about my health from how I look or how much hair I have. Right now I have the colorful headscarves and knitted chemo caps, but I’m doing much better than those “traditional” signifiers of cancer might indicate. Some time in the future I might have a full head of hair and look fine, but be close to the end.

Come to think of it, since all humans are mortal, that actually applies to everyone. Life is short and uncertain, so go ahead and be more kind than you absolutely have to be. Because you never know.




posted by Amy on Apr 12

I belong to a support group for women with advanced cancer that meets every other Monday at the hospital where I’m treated. The group is facilitated by a wise, witty, funny, caring woman named Hester Hill. Hester’s office is in the same suite as the hematology/oncology suite, so it’s convenient for patients, but anyone can come to the sessions whether they get their treatment there or not. There is no charge for attending the group.

Cancer is clever. It begins with mutations and it keeps on mutating. Once they metastasize, most cancers eventually outsmart all available treatments. For some cancers there can be a fairly long interval between diagnosis and the day the cancer ultimately has the last word in the story. I know a few people with stage 4 breast cancer who are still alive ten or more years after they were diagnosed. But people with lung cancer usually only last a year or two with treatment.

Obviously, the one thing a group of advanced cancer patients has in common is we’re all going to die from our disease. Two of our members who had lung cancer both died recently. One was Jewish, and died the morning of the first day of Passover. One was Christian and died in her husband’s arms on Easter. Neither of them had been coming to group recently, but once a member always a member. These losses were not unexpected, but they are still indescribably painful. Why would I, or anyone facing her own grim cancer diagnosis, willingly make friends with other people who are going to die? Doesn’t that just make living with cancer all the more difficult?

It’s difficult anyway. It would be worse if I tried to do it alone. I have gotten support, encouragement, sympathy, useful information, and joy (yes, joy!) from the group. I have also been able to love and serve others. I have gone from being a scared, stunned newcomer to being one of the role models. A few years ago several of us wrote entries for a “book of writings” that was published in connection with an annual event. Writing my own essays, and reading what others wrote, were profoundly moving and illuminating. Especially in our culture, which seems to be based on avoiding death at all costs, it’s healing to find companions who are willing to help each other face the truth and keep dancing with it. It really is better to have loved and lost than never to have loved. It’s better to realize that not only is there no time like the present, there really is no time BUT the present. Here, now, I’m alive. I can think, feel, pray, learn, knit, read, and write. The things I create–what I write and what I craft–are my legacy.

Hester writes a daily(!) blog. Last Monday she wrote about our latest losses, and about our group. She says, in part, “I feel especially tender about my relationships with women who attend my group for women with advanced cancer. It is remarkable to watch them care for each other and teach how to live in the looming presence of death.” Her post about losing these two women is wise, wonderful and illuminating. You can read it here.

Last night I watched the third episode of The Emperor of All Maladies on PBS. It’s called “Finding the Achilles Heel.” It deals with ongoing advances in treating cancer, but it also shows a remarkable young oncologist talking to two of her patients about death. One is an older man who seems quite ill and frail. She gently suggests they stop treatment and try to get him well enough to go home, and then decide if he wants to try more chemotherapy. Another is a woman who has just been diagnosed with lung cancer. Rather than mislead her, the doctor gives it to her straight. Lung cancer is treatable but not curable. Treatment will buy her time, but not a whole lot. The patient is sad and shocked, but she says she’s grateful for the information. This way she can figure out her priorities for the time she has left, and live as well as possible under the circumstances.


posted by Amy on Apr 9

I had “departed from myself”(a phrase from the story of the Prodigal Son) so early in childhood that I was unaware of how inauthentic my life was. My family of origin lived in a story of life, love and God that left me in a constant state of anxiety and fear. I had no foundation, no anchor, except my own self-reliance and self-will. I did not trust anyone because I didn’t know anyone trustworthy. To me, love meant pain, suffering, punishment and abandonment. “God is love” was not a very comforting idea in that context. Neither was the idea of God as a parent.

But I changed. At any given moment the life I have, and my character, are the result of my past and present practices. By practices I mean embodied actions including speech, and by speech I also mean self-talk. I change every day. The stories I tell myself about my life, about my intentions and purposes, and about God, shape the way I receive and integrate each new experience as it occurs. The people I hang out with, and the ways I interact with them, also change me from day to day. My practices form me spiritually, for good or ill. Slowly, over many years, I began living in a different story. Returning to church in 1985 after a 15 year hiatus was a major reason that I changed.

At its best, and when it is most faithful to the Gospel, Christianity lives in a counter-cultural story which is passed on through its practices. The Gospel replaces idolatry with holiness, competition and enmity with love, self-centeredness with adoration of and submission to God, and tribal identity with an expansive view of all humanity and all creation as being under the dominion of Christ as the Lord of all.  This happens primarily through ritual. People go to church and say things, do things, hear things, and think things that make them part of a story of love and grace as members of God’s family. Participants in worship and Christian education experience falling short or missing the mark, confessing, being forgiven, remembering they belong to God, and going out to practice love of God and neighbor.

The life I have now is the life I have designed for myself and have spoken into existence in concert with the people around me. If I want a better life—more joy, peace, beauty, patience, kindness, forgiveness, love, and light, then I have to do physical things that will prepare me to receive God’s sanctifying grace. If I am not experiencing the abundant life that Jesus promised, if I do not see the fruits of the Spirit in my character, and if I want those things, then I have to change what I do. God gives the growth, but I must do my part. I think that’s what Jesus meant by telling us to seek the kingdom of God first, and by saying we have to give up our life to find it. The interesting thing is how it works. It is not necessary to think it all through first. It is not even necessary to believe or understand. All you have to do is show up and pay attention. All you have to do is act as if it might be true. Ron Sider tells of taking an atheist on a mission trip. He agreed to let the young man go, on condition that he participate in all the activities, including prayer and worship. By the end of the trip, the atheist believed in God.

As I kept showing up, going through the motions, and paying attention, it began to sink in that I am God’s precious, unique daughter, that my body is a temple, and that God has a purpose for me. How would God’s precious daughter conduct herself? How would she expect other sons and daughters of God to treat her? How would she speak? I began paying attention to God outside of church. I would pray to God to make me a better mother, lawyer, and wife. When problems arose I would remember that a Love/Intelligence far greater than I can completely grasp was there to help me. Sometimes I would just sit and wait for a good idea. More and more, I felt befriended.

Just making the effort to get up, get ready and show up at church every Sunday morning is an enormously significant and important practice. When I first began taking my kids to church in the mid-80s I started out deciding every week if we would go or not. It soon became apparent that it would be easier on all of us if I just made it a habit, like going to work every Monday through Friday. Occasionally we would do something else on a Sunday morning. I noticed that the weeks I didn’t go to church on Sunday just didn’t go as well. Putting God first one day a week somehow changed everything else. Maybe I’d be more patient or kind. Maybe I’d be more sensitive to injustice. Maybe I’d just be more calm. This new way of living was like a plant that needed to be watered every week.

Sometimes it was the sermon. A good sermon makes you think. It sticks with you all week and asks you questions. You examine your assumptions. You hear something that burrows in and keeps nagging. Sometimes it nags in a good way, for example, if I hear that “There is no fear in love,” then I might figure out that somebody trying to control me with threats may not really be acting out of love. Often it was the music. I am especially attuned to music. I usually have a song running through my head. When I added the practice of showing up for choir I added the dimension of the discipline of studying music and of striving for excellence. We worked hard and did the very best we could to transmit the composer’s intention because we understood ourselves to be worship leaders. The choir’s motto was the same as Bach’s, soli Deo gloria¸ to God alone the glory. I once had the privilege of taking a group lesson from a renowned choir director. He said, “Nobody worships during a bad anthem.” I would add that some people only worship during the anthem. The choir is especially mindful of those people.

Components of the practice of showing up:

Keep doing it

Pay attention

Take yourself seriously

Take other people seriously

Understand that a relationship requires time on task and physical presence.

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 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.

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