Archive for March, 2015

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.

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.


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