posted by Amy on Feb 27

No, I didn’t mean to say “work/life balance.” Sigmund Freud said the most meaningful things for a human being are to love and to work. I agree with that, though I don’t see a sharp dividing line. I love all the work I do, some of it for pay, most of it because it is something to which I feel called in some sense–because it makes me or someone else happy, because it’s beautiful, or because I created it. (And even my paid work is a vocation that constantly presents me ways to learn and grow.)

But I have advanced cancer, so I’m always confronting death too. When he was dying of cancer Christopher Hitchens said he was experiencing what everyone goes through as they age, just at a faster pace. After living with metastatic breast cancer for almost six years, I have to admit that’s true for me too.

I am immune compromised, because cancer, cancer treatment, and steroids all suppress the immune system. That has had very real consequences, ranging from little infections that get cleared up with the right antibiotics to spending 26 hours in the hospital last June with a raging case of pneumonia (after which the pneumonia kept hanging on, or recurring, for several more months until radiation treatment corrected the structural reason for the pneumonia. The cancer was blocking the airway below it, interfering with the normal mechanisms for de-gunking the lung.)

In light of all that–cancer becoming more insistent in the last 18 months or so that it is out to get me and will most likely succeed–and with Ash Wednesday approaching, I have decided I need a better death/life balance. I suspect that being a little more respectful of the threat I’m facing might actually help me live longer, or at least better.

For nearly six years I’ve been fairly healthy, quite happy, pretty productive, and, until recently, not very impaired. I have never forgotten I have cancer, but I don’t dwell on it much either. I have come to terms with the dragon perched on my shoulder. “Let’s just coexist, shall we?” I say, and the dragon has allowed me to do almost everything I want to do. But now I need naps, and I need to ask people to slow down when we’re walking, and I need to pace myself in other ways. Giving in to those weaknesses and impairments allows me, once again, to think about who I am and what my true purpose is. It is obviously not about being strong, healthy, fit, and alive forever. So it must be about choosing words, friends, stories, work and spiritual practices that are life-giving, that do honor to the Love that created me. That’s what I mean by death/life balance.

I am part of a Creation that continually dies and is reborn. I am a minuscule speck in a vast, timeless Universe. But I believe that in some way that I will never fully grasp I was meant to be here. I know I have influenced other lives. I know others have loved and guided and nurtured me. I know we will all be returned to the Earth, that the high and the low, the haughty and the meek, the powerful and the weak, all have the same fate, but Life goes on. That comforts me.

My wise friend Dr. Trelawney J. Grenfell-Muir says it beautifully:

How much wisdom Christianity would rediscover if it remembered that the butterfly is not a symbol of the resurrection; rather, the resurrection is a symbol of the butterfly… The butterfly does what it does because it is part of a creation in which Life is stronger than death. At a fundamental level, even though there are always numerous particular examples where it looks as though death or non-being have the last word, Love and Life and Light are fundamentally, existentially stronger. Being is stronger than non-being, which is why there is something rather than nothing. The caterpillar dies so that the butterfly can live. The butterfly dies so that other microbes, worms, flowers, leaves, and caterpillars can live. That is the creation we are given. We tell the resurrection story not in spite of creation, but because of it. The resurrection story symbolizes the Truth that Love, Life, and Light are stronger, which is the truth the butterfly embodies. The story has power because it is True. The story has power because the butterfly is right. No matter how bleak any particular moment, no matter how chaotic, wild, free, and arbitrary existence can seem, the Creation that cradles us is the Source of Love, Life, and Light. Darkness is a womb, a place where new Life grows. We find stories, such as the resurrection, which can point us to that divine Truth, and we recognize them as True, and when we live according to them, we manifest wellness within and around us BECAUSE we align ourselves with the higher Truth: the Truth of the butterfly, the Truth of Creation, captured in the beautiful poem of the Resurrection of Sophia-Christ. Christianity comes from a deep, ancient connectivity with the natural world… I always hope we can rediscover that connection, and so rediscover the Source of the Power of our stories, the Source of their Truth.

Joni Mitchell sang, “We are stardust, we are golden, we are million-year-old carbon. And we’ve got to get ourselves back to the Garden.” But we never really left it. It cradles us. It whispers its secrets to us. And if we live into those secrets, that Truth, we are drawn to beauty like moths to a flame, attracted to the Truth because that is what we were created to do. And in living into the Love, Life, and Light that are revealed to us, we light the way, as well as we can, for those who come behind.



posted by Amy on Jan 17

Everyone wants to be good, to be loving, and to be loved in return. We want happy families, happy marriages, and good lives. But some of us were born into families with limited repertoires for healthy attachment, conflict resolution, Basic Trust, and intimacy. Being vulnerable and authentic are not advisable, because anything real can be weaponized to injure and control. If you want to survive, you have to play a role. You have to present a false self. Your mission is to manage the other people’s moods. Your job is to keep up appearances. If you want any kind of recognition, affection, or acceptance from them, then you’d better play by the rules.

I was in a marriage that started out on very familiar ground. He treated me the way my parents, especially my more powerful parent, had treated me. Let me say upfront it could have been a wonderful marriage if we had been able to learn the lessons it presented us about where our weak spots were and what we needed to heal from and transform. There were a lot of good times. We were well matched in many ways. But both of us were playing roles we had learned in our families of origin. In my role it was my job: to keep him on an even keel, to take the blame when anything did not go as he preferred, to submit to his will, and not to ever show any anger or ask for any different behavior than what he was doing.

For many years I was perfectly happy to live by these rules. It seemed normal. I had been socialized for just such a role, and I was really good at it. He, for his part, did all the things he thought were required of a good husband and father. He had been harshly criticized and punished as a child, and his family was dismissive and disrespectful of women, so part of his role was to mete out verbal abuse to his wife and daughters, and to be dismissive, judgmental, and disrespectful of them. He once told a counselor he thought this was appropriate. My father didn’t respect my mother, and she didn’t respect herself. My marriage made perfect sense.

Until it didn’t.

Little by little, I began to wake up. I began to be dissatisfied with my role. I didn’t want to live inside a false self. I wanted to be safe to be my true self. I wanted my husband to be my ally, partner, companion, friend, advocate. I craved true intimacy. I wanted him to trust me. I wanted him to realize I’m a separate, independent human being and not an extension of him. I wanted him to believe that I was not his adversary, and that by standing up for myself I wasn’t rejecting him but instead trying to put our marriage onto sacred ground.

Around that time he started calling me “Sweetie.” He also said things like, “You’re still my trophy wife.” I’m sure he meant well. He was using the old rules about doing a good job playing our roles to try to shore up our crumbling marriage. But I couldn’t stand it, and I couldn’t figure out how to explain why I couldn’t stand it.

We were in counseling. The counselor asked if there were one thing I would like him to do differently. I said to him, “Don’t call me Sweetie. Say my name.” I think he took it personally that his good intentions behind coming up with a pet name for me were not appreciated. As a matter of fact, I didn’t receive it as affection at all. It seemed more like a threat. He was calling me Sweetie because he had finally noticed I’m not “sweet,” and I had quit trying to act sweet toward him. To me it sounded like a “change back” message. But I wanted to be Amy. I wanted to hear how he said it. I wanted validation that “Amy” was not reducible to the “wife-and-mother” he thought I was supposed to portray in the drama of his life. I think he did quit calling me Sweetie. But he didn’t start saying my name.

He remarried. It seems to be working well for them, and I’m glad. I have only ever wanted the best for him. And I really don’t know her. In over twenty years we’ve had maybe three in-person conversations, and they were not about anything substantive. I suspect “husband’s ex wife” is a stereotyped role in her mind, not requiring any actual data or input from the human being who happens to actually be her husband’s ex wife. At any rate that would be one explanation of her lack of interest in me.

posted by Amy on Jan 1

I’ve been getting various kinds of cancer treatment since June, 2011 after being diagnosed with what turned out to be advanced (or metastatic) breast cancer in April, 2011. The first confirmed cancer metastasis was in my liver. The liver lesions were resolved on the first round of treatment and have not recurred (knock on wood). I’ve had breast cancer metastases in one of my lumbar vertebrae since April, 2012 and in my lungs since April, 2013.

In late 2013 I started having a dry, nonproductive cough, and I noticed some problems breathing on exertion. Eventually the cough was diagnosed as “atypical GERD” (gastroesophageal reflux disease), and I embarked on an ever-escalating program of medications for that. At its worst, it was causing voice production problems (from acid slopping onto my larynx). For someone who preaches and sings (and talks a lot) that was annoying.

Then there was the cough I got from radiation pneumonitis. I had 12 rounds of radiation to one area of my right lung where the cancer had been causing pneumonia by blocking the ability of the downstream lung tissue to function properly. I felt really good for about two weeks after that ended (on October 3). The GERD even got better. Then I started coughing really hard and long–hard enough to gag. I sometimes coughed up various kinds of secretions. I was also having trouble swallowing. And I was very short of breath if I moved my body at all. Within two weeks of the onset of these symptoms I felt very sick.

That was early November. I started taking Prednisone for the pneumonitis, and it is helping. But by the last week of December a wandering pain in the right side of my face had gotten intense enough that I was taking Ibuprofen around the clock to dull it. Sometimes it felt like a toothache, sometimes like an ear ache, and sometimes it seemed to be in my jaw. I had a slightly sore throat. No fever, except for one night. I finally went to the doctor, and one of the questions he asked was whether I had been coughing. I told him I cough all the time, from the GERD, from the pneumonitis, and most likely from the cancer itself. He diagnosed a sinus infection and put me on antibiotics. He said that cancer, cancer treatment, and steroids can all suppress immunity, so it was no surprise that I got a sinus infection.

Come to think of it (now that the antibiotics have kicked in), there really was yet another kind of cough going on. I had the symptoms for several months, so the sinus cough undoubtedly overlapped the other kinds of coughing. And since the “wandering pain” had started “wandering” down into the part of my back along the rib cage where I first had pain when I got pneumonia in June, I would not be at all surprised if some of the inflammation in my lung was actually a low-grade bacterial infection.

But now I hardly cough at all. I can take a deep breath–or 10–without triggering a coughing fit. The scan in November showed that, except for the pneumonitis, there was a good treatment response to the radiation therapy. I am on a new chemotherapy for the cancer. The antibiotic is zapping the bacteria. And I feel pretty good.

I had “a cough” for several months (or years, depending on how you look at it), but it wasn’t just one cough. My body was trying to tell me something, but it took me awhile to get the message. It’s almost like one of those nesting Russian dolls. One kind of coughing had to be fixed before another one could be identified and addressed.

Maybe it’s the same for other kinds of bodily or psychological distress. Maybe symptoms overlap or get mixed together, perhaps masking true therapeutic effects or obscuring conditions that need treatment.

posted by Amy on Nov 27

When my cancer was diagnosed in early 2011 I began listening to guided imagery and affirmations. One of the affirmations brought me up short. It said, “More and more, I realize I can heal myself and live, or I can heal myself and die. My wholeness does not depend on my physical condition.” At that time I thought the whole point was to “beat” the cancer. What was that about dying?

As I kept doing the imagery and affirmations on the CD, and writing my own affirmations and prayers, my attitude evolved. Focusing on cancer as “the problem” and thinking that getting rid of the cancer was “the solution” had its uses, but it was too small a container for all the things I was experiencing and all the issues I was confronting. A cancer diagnosis seems like a huge emergency, and it sucks all the life and energy and strength out of you for awhile. But I eventually noticed that I, like almost every other human being, had numerous, uncountable problems, of which cancer was only one. Some of them will never be “solved” until death makes them moot. Many of them are messages or opportunities that suggest specific responses. Some of them seem completely intractable. Cancer is a significant factor in everything else I do, think, say, plan, wish for, and hope for. But it is not all-encompassing.

Thinking of myself or any change in my life circumstances as a “problem” limits my options for responding to the situation. It would be so easy to ricochet from crisis to crisis without ever stopping to think about the point of it all. Or even if there is a point.

The point, as I see it, is healing and wholeness. “I can heal myself and live, or I can heal myself and die.” This mortal frame was never meant to be a permanent dwelling place. I love my body and what it has done and can still do. I take the best care of it that I can. But there was a time before this body existed, and there will be a time that I am no longer alive. I don’t want that day to come sooner than it has to, but there’s nothing I can do to prevent it from coming. All I can do is live as well as I can here and now. And the first step is radical acceptance of those circumstances. It is what it is. Now what?

More and more, I choose relationships, projects, activities, and plans that are life-giving. I know what makes me feel fully alive, fully engaged. I also know what drains me, depletes me, robs me of hope or enthusiasm. The touchstone is love. M. Scott Peck defines love as the will to extend oneself for the sake of one’s own or another’s spiritual growth. Love is not a feeling, and it’s not passive. It is not avoidance of conflict. It recognizes the inevitability of conflict in any relationship and affirms that we grow and develop as human beings by learning to understand and respect difference. Love is a verb, an act of extending oneself, and that act of self-extension can be awkward, scary, or uncomfortable, but it is undertaken in the faith that it is our human destiny, as children of God, to love God, neighbor, and self. It can’t be a solo project. It is communal. But it’s also a matter of exercising free will. I can’t make anyone love me. And if I invite someone to be real, to be truthful, to step out in faith that we make the road by walking, and the answer is no, then I will accept that no and move on.

I’m not always sure when my attempts to show love come across as I intend, though I am getting better at simply asking the loved one how he or she feels. But I can tell when I’m loved. I can tell when my name is safe in another person’s mouth. I can see when eyes fixed on my eyes are warm and full of light, and when they are not. I can choose to go toward the light, and add my own light to it. That doesn’t mean every interaction has to be sweet and conflict-free. But I expect honesty, integrity, and authenticity from the other person, and I expect that my own honesty, integrity, and authenticity will be received in a spirit of kindness and good will. If those expectations are not met, then in the words of Keb Mo, “I don’t know what it is, but that’s not love.”

Will that make me live longer? Who knows? But it allows me to be open to all sorts of possibilities. Instead of narrowing my focus to one specific “battle,” I embrace a Universe whose guiding principle is unbounded love and grace. I am imperfect. I am mortal. I am fragile. But I was meant to be here and I am loved.

posted by Amy on Sep 11

When I was in Philadelphia last June I came down with pneumonia and ended up spending 28 hours in the ER. They gave me IV antibiotics and pain killers, monitored my progress, and sent me home with a week’s supply of pill versions of the two antibiotics they’d been putting in the IV. I returned to Denver, recovered from the pneumonia (or so I thought) and went on about my business.

Then one night when I went to bed I felt something like strained muscles on the right side of my back, over the rib cage. I thought, “What did I do to pull muscles on just one side of my back?” In the morning I realized it was a milder version of the pain I had when the pneumonia first flared up. I called my primary care provider and explained I had recently been in the ER with pneumonia and thought it might be coming back. The person answering the phone offered me an appointment two days later. I said, “Do you really think it’s a good idea for me to wait two days to find out if I have pneumonia again?” She said there was nothing she could do. I guess primary care providers no longer keep open slots in their schedules for patient needing urgent care. Instead you have to go to one of those new “doc in a box” places that don’t know you, don’t have your records, and may not be covered by your insurance. Or you go the ER.

“Lucky” for me I’m a cancer patient, so I called my oncologist’s office, and they got me in within the hour. The nurse practitioner put me back on the same two antibiotics, this time for 10 days, and ordered a scan of my chest. While I was still taking the pills I saw my oncologist for a treatment appointment, and she extended the time period to 14 days. She also freaked me out with probing questions about whether it was actually an infection (Did I have a fever? Did I get better with antibiotics?) and a suggestion that I look into palliative care. And she said I should go consult with radiation oncology. She showed me the scan. The metastasized breast cancer in my right lung is blocking the airway. The infection is “downstream” from that, and my body can’t clear it. Radiation treatment could shrink the tumor and allow my body to defeat the bacteria that I’d been harboring for so long.

This is the first time in over five years that my stage IV cancer has directly affected my health.  It was sobering.

I made an appointment with radiation oncology. The first doctor I talked to, a senior resident, asked me what I understood about why I was there. I told him. He was surprised, I think, that I had such a good grasp of it. We talked some more, about my history with cancer, my health overall, and my life. I told him we’d been getting good cancer control with chemo almost everywhere, and my lungs are the only real problem area. He talked a bit about why it’s hard to control lung tumors with chemo. In the course of that conversation he changed his mind about how much radiation I should get and what the treatment goal should be. He said, “You look really great. You don’t look like you have cancer. We were going to do a short course just to shrink the tumor temporarily, but, though I have to get my attending physician to agree, I think maybe we can get rid of it.” I told him I’d been wondering for at least two years about local treatment for my lungs, and I was all for it. His boss agreed. They listened to my lungs and said the lower right lung was blocked again. I saw my medical oncologist later that week, and she prescribed another 10 days of antibiotics.

The next week I went in for a preparatory appointment where they made a “cradle” for me to lie in and gave me some tiny tattoos on my abdomen so I can be lined up in exactly the same position every time. They also did imaging so they could do 3-D modelling to plan where to aim the radiation. About ten days later I had my first radiation treatment. I have had four of the first six daily (Monday through Friday) sessions. After I’ve had six there will be a six-day break. Then I’ll go in for further imaging, and be scheduled for another six treatments at a higher dose. The reason for that is that initially it’s hard to tell cancer from infection. It’s hoped that there will be less cancer and less infection after the first round, so the radiation can be focused more precisely on the cancer. So far I’m tolerating it well, with few side effects. And my symptoms are diminishing.

The other day I had a thought. If local treatment is a good idea now, after a trip to the ER and walking around with a chronic bacterial infection for two and a half months, wouldn’t it have been an even better idea back in March, when a scan showed I had no detectable cancer in my body except in my lungs, and the cancer there was getting more active?

I think what is needed here is a more robust definition of “palliative intent.” Since my cancer is not curable, my treatment goal is “palliative:” to keep me as comfortable and healthy as possible, and to enable me as much as possible to live the kind of life I want for the time I have left. It seems to me that there is a lot of overlap between “palliative” and “curative” care. This situation is a perfect example. Getting rid of the cancer in my lungs with a proven, relatively low-risk therapy, even if it comes back later, is much better than sitting by and watching it grow, and letting it cause consequences like pneumonia. I have been getting cancer drugs continuously for over five years. They must be doing some good in my lungs, because I’m still alive, but it obviously hasn’t been ideal. Six months ago I was half a year younger and less sick. If I’m a good candidate for a relatively aggressive treatment plan now, then it was all the more so then.

I’m going to have a chat about this with my oncologist.

posted by Amy on Aug 22

I’ve traveled a bit this summer, and I’ve seen some people I don’t often see. They usually tell me I look great, and ask me how I’m doing. I usually say, “I’m fine. I still have cancer.” That usually draws a quizzical look, or a story about someone who “beat cancer.”

My cancer had already reached the incurable, final stage when it was diagnosed. It is “manageable” and “treatable,” but not curable. But here I am in the sixth year since that happened, and I really am fine.

When I was first being treated for cancer it struck me as odd that the health care providers always asked, “How are you?” I’d think, “How do you think I am? I have cancer and there’s virtually no chance it won’t end up killing me.” But, over time, I settled into the routine and learned to work around that little bump in the road. For me it has been relatively easy. I don’t have a lot of impairment from either the cancer or the treatments. I know I’m lucky.

But I’m not just lucky that living with terminal cancer is going so well for me right now. I’m lucky I didn’t die before I lived long enough to get cancer. I could have succumbed to any number of other threats by now: car wrecks, drowning, lightening strike, meningitis, complications of childbirth, some less manageable cancer. . . . . Human bodies are fragile, vulnerable, mortal. I am going to die. So are you.

Say you don’t know for sure you have a terminal illness. Someone asks how you are and you usually say, “fine.” That may not actually be true, but the questioner kind of expects you to say that, and would be very surprised if you said “I’m gonna die!” In truth, unless you do know you have a terminal illness, you probably don’t think a lot about your fragility or mortality, and neither does the person who said, “How are you?” When someone who hasn’t seen me in awhile asks it, I’m pretty sure they assume that since I am still alive, have hair, and look healthy, I must not have cancer anymore. I don’t want them to make that assumption, so I give my standard answer. But since every single one of us is going to die someday from something, we could all be answering, “I’m fine. I’m happy. I’m glad to be alive. I’m going to die.”

More and more, I see value in my showing up, doing normal stuff, starting projects that take time and effort, continually trying to be a better human being, AND doing my best to make sure no one is shocked when they find out I died. Just shoot me if you ever hear me say cancer was a blessing. I like to think I’d have figured this stuff out just from getting older, losing loved ones, and gaining wisdom. But I do think having death as a constant companion has made me much less afraid to live.

You don’t need to get cancer to figure it out. Don’t be afraid to live. This is not a dress rehearsal. Be honest. Be authentic. Be brave. Be good. Be loving. And if there’s anything you’ve been wanting to do (and it doesn’t break any of the 10 Commandments) then just do it.

posted by Amy on Jul 19

When I saw my oncologist last Friday she told me that I need to maintain my weight in order to support my immune system. She ordered me not to lose any more weight. When I went to get my infusion I had my nurse look up how much I weighed in September when I started being treated at University of Colorado Hospital. I’ve lost 18 pounds since then. I remember how much I weighed after my first round of cancer treatment five years ago. I was getting steroids, which made me ravenous (and really mean, but that’s another story). I now weigh 40 pounds less than I did then.

There are several things going on here. In 2014/2015 while I was getting some counseling I figured out that I had a subconscious fear of being hungry. I usually ate nutritious food and didn’t have a sweet tooth, but I was just a bit obsessive about responding to any and all hunger pangs. I decided to just start noticing when I was hungry and detaching from any feelings about it, rather like one does with intrusive thoughts while meditating. Then I decided to see if I could satisfy hunger with somewhat smaller portions. There were no rules. I wasn’t “on a diet.” I ate whatever I wanted, whenever I wanted. I had been operating from a scarcity mindset. I began to trust that all my needs will be met, including but not limited to my need for food. And my body slowly began to return to its natural weight.

But eating has become a bit of a chore in the last year or so. I don’t need to detach from feelings about hunger pangs because I either don’t get hungry or don’t notice I’m hungry. Also some cancer treatments cause loss of appetite. Now that I’ve been told my life may depend on not losing any more weight another dynamic is coming into play. I don’t like being told what to do.

And there’s that lifetime of messaging from the culture and my family that my worth as a human being depends on my being thin. I have spent so much time and energy–all my life–obsessing about my weight. At one point in my teens I was borderline bulimic/anorexic. For most of my life I have hated my body, meaning I hated myself. I punished my body, meaning I punished myself. I exercised obsessively, dieted obsessively, read books, kept journals, recorded my weight and measurements, joined gyms, bought exercise videos, etc. etc. etc. I also rebelled from dieting, exercising, weighing, measuring. I didn’t want to conform to societal norms and expectations. I wanted to be loved and accepted for my mind, my heart, my deeds, not the shape of my body. Keeping a nice, squishy layer of extra flesh may have been a way to protect myself from the attention and intimacy that I both craved and feared. Now I weigh less than I did my senior year in high school, and it happened almost automatically. In a secret, sick way, one part of me may see this as a payoff.

The healthy part of me recognizes how insane that thinking is. I want to live, and I want to stay as healthy, strong, and vital as possible. My doctor said to get more calories. After a lifetime of specializing in knowing exactly how many calories are in everything that goes into my mouth, that should be a no-brainer.

I’m writing this post to identify feelings, triggers, and ghosts from my past. I don’t have any answers at this point.




posted by Amy on May 24

Last July I tried a sort of Hail Mary pass for my cancer treatment. When I was first diagnosed I got great results from a “taxane,” an old-school chemo drug that eliminated both all my body hair and the cancer metastases in my liver. But then cancer popped up in other places, and the next four years were a game of inches. trying to achieve the metastatic cancer patient’s “best” outcome: good cancer control with acceptable side effects. By the end of June, 2015 there had been several scans with “mixed” results, but they seemed to be going in the wrong direction. So we decided to try another taxane. I was on it for almost half a year. There were numerous side effects, including infections, pain, some depression, and other stuff. I got so I dreaded the treatments. I had my last dose of the “strong” stuff on December 18, and since then I’ve just gotten targeted treatments with minimal side effects.

My October scan was fantastic. Almost all the places that previously “lit up” were quiet. The word the radiologist used was “resolved.” I got really excited. My liver lesions were “resolved” in late 2011, and they have stayed that way. Maybe the Hail Mary pass was panning out! Only my lower lungs were still showing cancer activity in October, and the lesions were smaller and less active. Then the January scan showed no new lesions, but the cancer in my lower lungs was slightly more active. Then a scan in early May showed more activity. Based on my personal definition of “stable” as “no new lesions, ” I’m still “stable,” because all the uptake was in previously-noted lesions. Does that mean my cancer is getting resistant to chemo? Is this the beginning of the end? Or is it just a “normal” kind of toggling back and forth? Should I jump on this with another kind of chemo? Or should I wait until I see new lesions? Or get into a clinical trial? Or what?

Nobody really knows. As my oncologist said, we don’t have a crystal ball to know what might be helpful and what won’t. She has a suggestion about what to try next. I’m not very charmed by the treatment schedule or the side effects. On the other hand, I’d be dead by now without the brilliant and caring medical professionals I’ve known. Their ideas and creativity and knowledge matter a great deal to me. In the end, though, I take to heart some things I’ve learned from others in the field: 1) if a new drug is going to work it will clear up a lot of cancer or a little. There’s no special urgency about switching treatments and, 2) “Progression free survival,” the interval before the cancer shows signs of increased activity, does not predict overall survival. We don’t actually know the end of this story until we get to the end. Logically it seems we should try for “no evidence of disease,” or at least “stable” disease, but empirically it doesn’t correlate.  I keep that in the back of my mind when I get to decision points like this.

No one knows how to cure me, so at this point it’s more art than science. At five years out I’m already an outlier. Almost 80% of the people with my diagnosis are dead within five years. At this end of the bell curve there’s no real standard of care. I comes down to art, and hunches, and trial and error. My personal goal is to stay alive long enough to be around when they figure out how to cure this. Short of that, there are a few things I’d like to do before I hit the acute, actively dying phase of this disease. I don’t feel death breathing down my neck just yet, but I know things can change quickly. I’ve seen it happen many times to others.

If the answer lay in just being too busy to die, I’d have that sewn up. One of my kids is getting married June 12, and  back when I thought I had “plenty of time,” I decided to make a dress to wear to the wedding. I have a pattern, and the material. I’ve cut out all the pattern pieces (but have not laid the pieces on the fabric, or cut it). That’s as far as I’ve gotten so far. I also decided to knit a wedding present. I am knitting, but I am starting to doubt I’ll get finished in time. Then there’s the PhD. I am studying for comprehensive exams, supposedly. I read a lot. Some of the books are even on my bibliography. Oh, and I help take care of a delightful elderly woman who recently started needing more care. And I’m a volunteer associate pastor at a little United Methodist Church, partly because they love me and need me, and partly because the work I do might help me get ordained.

And I decided to start dating again. Last month I put an ad on an internet site. I got a lot of responses, most of them apparently genuine and sincere. I have some new male friends, most of whom I’ve told I have cancer, but not all. I don’t really have an agenda. I thought I’d see who showed up, and take it from there. I’m pretty sure I don’t want another husband. I’m quite sure I want something authentic and meaningful. I enjoy smart, funny, passionate people. Maybe there’s someone like that with whom I’ll click. Nothing ventured nothing gained.

To my way of thinking, it would be much worse to die with everything all finished and wrapped up and indexed and finalized, not because I’m super organized (and I’m not) but just because I quit doing anything new. My whole life has been not just one but many works in progress. A substantial part of who I am is wrapped up in my attraction to possibility and potential. I have no idea where any of this is going to wind up. In any event I will leave some loose ends.

It would be far worse to sit around waiting to die and end up living another 20 years with nothing to show for it. Granted, that’s not a likely outcome for me, but that would still be truly terrible.

Edited May 26, 2016




posted by Amy on Apr 22

Today I went in to get the infusions I get every three weeks. As someone with stage IV cancer, I will be in treatment for the rest of my life, which is likely to be shorter than if I didn’t have terminal cancer. But I’m one of the lucky ones. For most of the five years since I was diagnosed my cancer has been “stable,” though it has been necessary to keep switching up my medicines. From mid-July until late December last year I was getting one of the chemo drugs that cause hair loss. Now I’m off that, and all I get are antibodies that help my own immune system control the cancer. My hair is growing back and I have eyebrows again.

While I sat there with the IV dripping into me a young woman came by to see if I might like to be matched with a peer support person. She said she’s with an organization that matches cancer “fighters” with “survivors.” I told her I’m neither. My cancer is “incurable but treatable.” I’ve had it for five years now. I said that, under the circumstances, I’d probably be more useful as a mentor than as a “fighter.” I was polite, though, and I took a brochure. I said I’d think about it.

I try to be generous about terminology. If “survivor” meant “not dead yet,” then I’d be all for it. But it usually doesn’t mean that. It’s usually part of a narrative about having one’s life temporarily upended by a cancer diagnosis, going through a year or so of hell, and returning to normal. I am not one of those people.

And I don’t like any combat images about what someone with cancer might do in response. It’s completely inappropriate to call it a battle. I have said this before, but as God is my witness if anyone is stupid enough to publish an obituary about me saying I “lost my long battle with cancer” I will find a way to wreak some sort of vengeance from the other side. Good grief. If someone gets run over by a truck you don’t say he “lost a battle with” the truck.

One of many issues with the “battle” metaphors is the way they subtly transfer the blame to the sick person when she dies. Jumping Jehoshaphat! There is nothing surprising, out of the ordinary, or blameworthy about succumbing to a fatal illness. Don’t act surprised, or imply that the deceased had any control over that. The “fighter” metaphor gives people who haven’t received a diagnosis like this a false sense of control and security. But it won’t work.

If you get a diagnosis like the one I got it doesn’t matter how hard you “fight” or how much you want to live or how many times you “think positive thoughts.” What happens after a diagnosis like this is highly individual and completely unpredictable. A woman I know who’s done oncology social work for decades once wrote that she’s seen people die who “should” have made it, and people go into remission whose odds of doing so were so small as to be functionally zero. You just never know.

It is not a fair fight. It’s not any kind of fight. Some of my cells jumped the shark. They changed in ways that make them not die when they’re supposed to, not stop multiplying when they’re supposed to. But they mean well. They want what we all want–glory, immortality. It’s a kind of biological hubris or original sin. But they are not an enemy. They are part of me.

While we’re on the subject, April 19 was the fifth anniversary of my cancer diagnosis. I was living in Boston at the time, and the news came a day later than it might have because of Patriots’ Day and the Marathon.

I’m one of the lucky ones. I can still do just about anything I want to do. I have lots of energy. I don’t have “chemobrain.” I have choices. I am loved. I am grateful for every opportunity to be with loved ones and talk with them about things that matter to me, or to them. I am alive, and grateful for that. But I’ll be 62 years old in about 10 days, older than either of my parents got to be, older than two of my siblings were when they died.

I haven’t come up with a word I like better than “survivor,” but nevertheless I don’t call myself that. Nothing can change the fact that life invariably and unavoidably ends for every one of us. As some wag somewhere put it, the interesting question is not whether there’s life after death; it’s who’s alive now, before their bodies cease to function. What I’m experiencing right now isn’t “survival.” It’s simply “living.” For now.

posted by Amy on Apr 15

I raised my sister’s only child, a daughter who is now 31 years old. My niece came to live with us permanently when she was 3½. We had her evaluated by a psychiatrist, who diagnosed her as having Reactive Attachment Disorder.

As my niece healed from attachment disorder (with the help of a lot of attachment therapy and the things we did at home), I did too. After all, attachment is relational and mutually reinforcing. Things either the parent or child does that contribute to warm, pleasurable, and safe interactions reinforce healthy attachment. Negative, distrustful, violent, rejecting behaviors disrupt attachment. A healthy parent can calmly and consistently provide nurture and structure to a child who is difficult to love. An unhealthy parent will be unable to do that. But with patience, insight, respect, love, and perseverance, two damaged people can help each other heal.

This shows how attachment problems become intergenerational. A child who’s insecurely attached grows up to be an adult who may have trouble bonding with his or her children (and partner). When my niece was an adolescent she got to be big, loud, and angry. That triggered feelings and memories of my own mother, and touched off my PTSD. It sometimes rendered me, as my niece once memorably pointed out, “a raving lunatic.” (To be honest, sometimes it still does.) That experience, and working to understand it and heal from it, gave me insight into the emotional dynamic in other close relationships I’ve had.

This process of understanding and, more importantly, healing, from my own attachment disorder helped me better understand and have more empathy for myself, my parents, and my siblings. I slowly began addressing parts of my own development that had been interrupted or distorted in my formative years.

I still have people in my life who I love—or toward whom I want to behave lovingly—who can’t love me back. I’ve learned to calibrate my expectations so I don’t (often) set myself up for disappointment and heartbreak. Love isn’t a transaction anyway. I don’t choose to be loving so I can get something in return. And love isn’t ever wasted, even when it’s unrequited. For that matter, it’s not my place to judge. I may think my love is unrequited, but I can’t possibly know or understand the other person’s inner truth. Although I still need to be with people who show me acceptance and affection, and who let me do that for them, I don’t have to get rid of anyone I love.


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