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.


posted by Amy on Apr 11

I have finally realized that some important but less-than-fun relationships have played a significant role in my development. And I am truly grateful for what I learned from them. I’m going to try to speak in generalities about these relationships, because some of the people are still alive, or protective of the reputations of those who have died, and I don’t want their feelings about what I have to say to take away from my message. My sincere, honest intention is to express appreciation. And I want to encourage others to adopt a more gracious, grateful attitude towards anyone who drives them crazy. They are our best teachers. They create significant opportunities for healing, wholeness, and wisdom.

Most of the formative relationships in my life have involved trying to love people who can’t love me back. Deciding to write about this made me realize there’s a strong correlation between how I feel about having an incurable illness and how I feel about those significant people. The basic instinct is to oppose and fight either a toxic person or a devastating diagnosis. “How dare they/it?” “I deserve better!” “You aren’t the boss of me!” “You have no right!!” But, as I wrote earlier, to oppose something is to maintain it. The injury or injustice becomes a defining feature of the relationship. It gets woven into a dance of anger that actually maintains the status quo.

Then there’s taking a victim position. “There’s nothing I can do.” “I know he doesn’t really mean it.” “She needs me.” “This cancer is going to kill me.” This is accommodation. Somewhere along the line I got the idea that I deserve to be mistreated–either by people or by my body. I’ve written about that too. At bottom is a damaged sense of self, and a learned helplessness.

Many of my difficult relationships were push-pull efforts to extract the desired behavior from the other person. Almost always, the defining feature of these relationships was an imbalance of functioning. One person over-functioned, robbing the other person of dignity, agency, and respect. The other under-functioned, making him or her constantly resentful, disempowered, guilty, and helpless.

This dynamic can be extremely stable, though it sucks the life out of both people in it. The overfunctioner gets really burned out, and never ends up getting what s/he wants anyway, which is to be seen, known, cherished and accepted as a real human being, and not as some kind of invulnerable superhero. The overfunctioiner wants to be rewarded for all the good deeds, all the backing down from fights, all the good intentions. But that’s never going to happen. The underfunctioner stays stuck in an immature, narcissistic role. He or she is actually scared to death of being abandoned, fully conscious of a fundamental inability to stand on his or her own two feet. This is masked by aggression, hostility, jealousy, and mistrust.

Once I figured out I was actually the common denominator in a certain type of relationship dynamic, I began to realize that the “difficult” people in my life were holding up a mirror for me. What they were telling me about how they they saw me and my behavior may have been overblown, or unnecessarily harsh, or even unfair, but it reflected something about their reality. And their reality was valid for them. Whenever, instead of writing them off as wrong or bad, I decided to be curious about what was going on and resolved to take responsibility for my part in it, I began to learn some things about myself and my own character defects and weaknesses. In most cases I wasn’t the root cause of the the other person’s fear or resentment. That came from family-of-origin stuff. But I was doing something to bring it out.

There were people who, I realized, didn’t see me as a real person, but only used me to work out their “stuff.” Well, I also did that to them. In fact, every time I thought or said “So-and-so always does such-and-such,” if I then added, “just like me,” two things happened. First, I developed more understanding of the other person, and more compassion. And secondly I did that for myself.

I used to expect to be betrayed. I never asked for what I wanted or needed in relationships, because I thought I already knew the answer would be no. Instead I always just did damage control. I’d back away from disagreements so I could “keep the peace.” I tried to get love from people who “loved” me but didn’t like me. They were fearful, insecure people too, and they managed their lives by trying to control and manipulate others, hiding their true selves. I did the same thing. I played the same game. Once I began to focus on my own fears and decided to heal myself, everything else changed.

I do not claim that this “fixed” my relationships with all the difficult people. In fact it never did. But it did help me understand myself better. It also helped me clarify my own values, figure out what I wanted and needed, and develop the courage to ask for those things. I had plenty of work to do on myself. I had neither the right nor the power to change other people, and I had no control over how they’d respond if I stood up for myself. But I could quit making myself suffer by harboring unrealistic expectations. I was able to deintensify my reactions, and look for ways to stay connected that didn’t involve harming myself.

I am much happier now. I feel balanced, calm, and OK far more often than I used to. I don’t blame other people, or myself, for being human, for screwing up, for making less-than-perfect choices. I don’t get mad at the wind for blowing. There’s no reason to repay anger or hostility or resentment with anger, hostility or resentment. People do the best they can with what they know. Judging them or fighting back is nothing more than a way to avoid taking responsibility for my own actions.

Which brings me back to thoughts about cancer. I have no interest in allowing cancer to curtail my emotional, spiritual, and intellectual development. I don’t have to let it define me. Furthermore, I do not see myself as being in a battle with an adversary. My cancer cells are part of me, not a foreign invader. To me, hating the cancer feels too much like self-hate. It also feels a lot like accepting uncritically someone else’s negative judgments about me. I know what my own intentions and motivations are. If I fall short, then I can try to do better next time, but I don’t have to jump from “I made a mistake” to “I am a mistake.” I am what I am. Facing reality, “warts and all,” is the only way to construct a way forward.

Just as relationships with “difficult people” can be a source of insight and wisdom, and ultimately, strength and healing, so can my relationship with cancer. I take it seriously, but not too seriously. I acknowledge its role in my life, but I don’t make it my central focus. It may ultimately win (though, by killing me, it also kills itself–like a suicide bomber) but if I allow it to paralyze me with fear or bitterness, it wins now instead of later.

I’m going to die. I’m not dead yet. In the meantime I choose to live, and learn, and grow. And love anyway. I haven’t had the kind of love from some other people that I was hoping to have. But I’m still here, unbroken, older, wiser, and there’s no need to assign blame or tell a story about failure. I can choose kindness. I can choose to say, “never mind.” As a matter of fact I feel more loved and supported and appreciated now than I ever did before. Just because particular people didn’t live up to my expectations doesn’t mean I’m not lovable. It doesn’t even mean he or she “failed” me. It just is what it is.

So be it.

posted by Amy on Apr 10

This relates to the previous post.

On Good Friday (March 25) we had a care conference for my sister with the palliative care team at the hospital.  They told us that many people with MS end up dying of “aspiration pneumonia.” The MS causes weakness in the neck and throat that makes it impossible for the person to protect her airway. Whatever goes into her mouth ends up in her lungs. There’s no way to fix it.

Just that morning, my sister’s respiratory status had worsened. We were at a fork in the road, and had to choose whether to put her back on a respirator or put her in “comfort care.” Leaving her stuck between those two alternatives was the worst thing to do. She was suffering; not getting enough oxygen. Someone on comfort care can get morphine, which tricks the brain not to notice the respiratory distress, plus a medication to help dry up secretions. So we opted for comfort care.

After we concluded the meeting I went in to talk to my sister about the decision. She nodded vigorously to show her assent to the choice we had made. She wanted to live, but she understood that she had reached the end stage of her MS. I reminded her what she had said to me back when her husband was dying from MS–that I didn’t want to lose her, but hated to see her suffer. We called the chaplain, who asked her if she was afraid. She shook her head no. The hospice chaplain called a priest and, as it happened, her own priest from her home parish arrived and did absolution, communion, and anointing of the sick.

Once it was decided not to try to fix the pneumonia anymore, my sister was allowed to eat and drink. She enjoyed that immensely, participating in ordering food to eat, drinking water and other beverages, and having treats like Italian ice and cheesecake. Every time she swallowed anything she coughed (ineffectually). I pointed that out to her, but told her she was the boss. She could have anything she wanted.

She made me understand that she wanted me to pray with her. In the past we had had numerous conversations where she questioned whether I was a real Christian, since I’m not Catholic, so I found that extremely touching. She wanted me to pray. She wasn’t making any more judgments about doctrinal purity. I and other family members also sang to her. I brought in a hymnal, asked her if she wanted us to sing hymns, and she agreed. We read poetry and other readings. We hung out. On Easter, after church, I sang Easter hymns.

The hospital people weren’t at all sure my sister would live through the weekend, but she did. On the Monday after Easter she was transferred to a lovely in-patient hospice facility. That day was a hard one. It took until after eight o’clock that night to get her comfortable. But I spoke to her again about what was happening. I said nothing would be done to hasten her death, but neither would any measures be taken to try to forestall it. She would have a natural death, and I would stay with her. She nodded her assent. When they finally got enough morphine into her so she could relax and fall asleep I went home.

I didn’t get back until about 2 on Tuesday. I was told she had taken communion, and had eaten some pureed French toast and had water to drink. But when I got there she was nonresponsive. She opened her eyes briefly when our cousin Russ spoke to her later in the day. But after Tuesday that didn’t happen again.

I spent every night in her room from Wednesday through Sunday. I didn’t want her to be alone. Other family members came to be with her when I had to be away for other commitments. We played music cds. I watched “Frozen” with her on her in-room system. Since the speaker for her TV was in the all-purpose remote/call button, our heads were close together. I prayed to her and sang hymns. I reminisced.

She slowly sank down, breathing more shallowly and taking longer pauses between breaths. The last few nights, when I was about to go to sleep, I stood by her bed and said, “Now I lay me down to sleep. I pray the Lord my soul to keep. If I should die before I wake, I pray the Lord my soul to take.” I think it’s awful to lay something like that on a child, but for an adult who actually might die overnight, it’s perfect.

She died at 11:30 am on Monday, April 4. I was with her, as was a hospice caseworker, who confirmed that her heart had finally stopped beating. It was peaceful. It was a good death.

The funeral was yesterday. At the graveside service, the officiant recited “Now I lay me down to sleep. . . .” I broke down crying.

Edited for clarity, April 11, 2016


posted by Amy on Mar 21

I’ve been my younger sister’s court-appointed guardian since June, 2007. She has multiple sclerosis, and she’s chronically mentally ill. She had her first psychotic break in 1981, when I was pregnant with my second child. She had her first and only child in 1984. I ended up raising that child. The guardianship arose from my sister deciding, in 2006, that she had been miraculously cured of all her ailments, including myopia. She threw away her glasses and quit taking all her medications. She ended up in a totally inappropriate short-term rehab facility, there being no long-term psychiatric treatment programs in Colorado. And the county brought a guardianship proceeding.

In all that time, I have never been consulted about medical decisions that were made about my sister. One time, when her psychosis flared, she ended up sedated so heavily that she had to be on a respirator to keep her alive. It took a long time for her to heal from the physical and psychological damage that caused. No one even asked me for history or for insight into her behavior. They just went ahead and “treated” with near-lethal sedation.

We’re still in the dark ages when it comes to people whose behavior doesn’t fall within socially-approved norms. A psychological “episode” which could be managed with the proverbial “rubber room” and some prudent monitoring turns into an  excuse to use chemical restraint that almost annihilates the patient. As an older white woman my sister was lucky. Mentally ill people of color, especially men, are routinely gunned down by police in other contexts.

I and other family members noticed a long time ago that steroids make my sister psychotic. Whatever good they may do for her physical condition is more than erased by the damage to her mental state and executive function. I have tried my level best to make sure people don’t give her steroids. I have never succeeded. I’m her guardian, but no one consults with me about her treatment. Early in 2015 she was put on IV steroids for an MS exacerbation. I was not consulted and did not consent. As always happens, that put her on a roller coaster of manic or hypo-manic states followed by depression. There were numerous unpleasant incidents in her nursing home, and a revolving door of hospitalizations. They would attribute her behavior to urinary tract infections, which no doubt played a role. But the main problem, as I kept pointing out, is steroids make her psychotic. Later in the year, she consulted an ear, nose and throat doctor about her TMJ. He prescribed prednisone. More bipolar psychosis ensued. She lost a great deal of ground in terms of cognitive competence and emotional regulation.

She ended up in a very, very depressed state early this year. She started saying she was going to die soon. She even said she was already dead. She said she wasn’t going to live to see her 60th birthday, on February 17. She wouldn’t get out of bed. Forget physical therapy. She wouldn’t do anything at all, not even use her phone. She wouldn’t eat. Sometimes she wouldn’t even talk.

About four months ago I got a call from one of the nurses at the nursing home where my sister lives. She said there had been an “episode,” possibly a seizure, but all the vital signs were fine. Then the nurse started pressuring me to convert my sister’s “full care” orders to “do not resuscitate.” I said I know my sister believes that anything short of “full care” is murder or suicide. It comes from a deeply-held religious conviction. The nurse said, “maybe she changed her mind. People do that.” I said that since my sister was not in her right mind at that time, there was no way to know if that had happened.

About 2 1/2 weeks ago I went to a care conference at the nursing home. My sister had pneumonia, and was too sick to attend the conference. Once again, the subject of DNR came up. This time they said if I revoked the “full care” orders and converted to “DNR” my sister could get hospice care, and Medicare would pay for it. They said the extra level of care and attention might actually help her “graduate” from hospice. I said, again, that as far as I know my sister didn’t want that. Despite feeling pressured to do so, I didn’t change her status. I may have the legal right, as her guardian, to do that, but I don’t think it’s morally right for me to override her wishes. I’m supposed to be her voice, not substitute my judgment for hers.

The night of the care conference my sister was sent to the hospital. They put her in intensive care, on life support (respirator, blood pressure support, nasal feeding tube, lots of monitors and IVs.) After about two weeks they got her weaned off the ventilator and moved to a regular hospital room. They put a feeding tube into her stomach, because she couldn’t really swallow anymore, and that created a risk of aspiration and further lung infection. After a couple of days they sent her back to the nursing home. After just 2 days at home, she was sent back to the hospital.

Her first full day home I got a call from the Nurse Practitioner assigned to her case by her Medicare Advantage health insurer. The call was ostensibly to update me on my sister’s care, but it was really about renewing the push for me to put her into hospice care. The woman didn’t even know enough about the case to realize I’m a relative and not “just” a guardian. It was exceptionally creepy.

Her second day home my sister took a turn for the worse, with symptoms the nursing home couldn’t manage. The nursing home called the Nurse Practitioner, who “refused” to allow them to send my sister back to the hospital. They called her attending physician, who authorized readmitting her, and she went back to the ICU.

I and others who have been in contact with my sister think she now wants to fight. She tried “checking out,” and almost succeeded. She can’t talk, because of the damage caused by the ventilator, but she is much more alert, interactive, and responsive than she was before she got sick. She tries to talk. She makes eye contact. She gestures. She changes her facial expression. She mouths, “I love you.”

If I had agreed to change her care instructions on the day of the care conference my sister might be dead by now. She might die anyway, and that might actually be a blessing. It really sucks to be her. She’s in constant pain. Her body is almost useless. She must be bored and frustrated. Her mind runs amok, and things get even worse when she has an infection. I wouldn’t blame her at all for wanting out. But I’m hoping she’ll get well enough to talk to me about what her wishes are, so I can advocate for her.

After over 8 years of being ignored and circumvented as Guardian, suddenly I’m getting a lot of attention. People at the nursing home who know my sister and care about her think maybe hospice is the best way to go right now. I believe they truly have her best interests at heart. The catch is she can’t have hospice care unless she or I revoke her “full care” orders. Then there are the bean counters who seem to be saying she should go ahead and die and reduce the surplus population. They are so patently thinking about the bottom line, and nothing else, that it turns my stomach. They don’t know me or my sister or our family. They don’t really want to know. Suddenly they are experts in my sister’s life, and mine. That woman who was pressuring me to put an end to attempts to save my sister’s life did nothing whatever to earn the right to take that position with me. It’s the closest thing to a “death panel” I’ve ever seen.

I know intensive care takes a toll. I know my sister was already depleted, confused, and weak when she first went into the ICU. Her resources for clawing back from this latest development are even more depleted. I am pretty despondent about her prospects, but if she wants to fight then I support that. Until I see evidence that she doesn’t want to live, or that it would be utterly hopeless, I’m going to stand firm.

Edited 4/22/16 to correct a misstatement and for clarity.


posted by Amy on Mar 20

She said to me, with a look of genuine concern on her face, “I can’t imagine what it must be like to live in ‘Cancerland.’” She was referring to one of a suite of essays I wrote in connection with a professional evaluation. In it I included quotes from one or more blog posts using that term. Since I often blog about what it’s like to live in Cancerland, I figure either she hasn’t read my blog, or I have not explained it well. As my fifth “cancerversary” approaches, I’ll try again.

At first it was like being yanked into an alternate reality that didn’t make any sense. How could I have cancer? I had done all the things they say you need to do to avoid it. I was (relatively) young. I was strong, healthy, vital. I hardly ever even got a headache. I didn’t even have a pharmacy. There must be some mistake.

Then I became frightened. How would this affect my plans for the future? Did I have a future? What if I died in Boston, thousands of miles from the city I considered home? What should I tell my kids? What should I do? People stepped forward to help me through that first phase. A dearly loved friend with whom I don’t talk much shared her experiences and knowledge. She recommended that I do guided imagery, and I followed her advice. My seminary held a healing service for me. A new friend who had had breast cancer twice said, “Don’t worry about anything until you have to.” And life went on. I stayed in school. I decided to go ahead with plans to apply to PhD programs. I started treatment.

I learned more about breast cancer, not just survival rates and treatment modalities and recommendations for what to do next, but the politics of the pink ribbon. I learned that in some 30% of breast cancers that are diagnosed and treated at an early stage the cancer comes back eventually at stage IV, the incurable stage, and that some 6% to 10% are stage IV from the get-go, as I was. Since some of these recurrences can be up to 20 years out, five-year survival rates are meaningless. I will be a “five year survivor,” but I still have stage IV breast cancer and will most likely die from it one day. That’s not exactly a pretty pink success story for screening mammography. I learned that somewhere around 20% of breast cancers overexpress a certain protein. It’s the kind I have. It’s usually very aggressive, and used to be the “bad kind,” where they’d tell the patient to go home and get her affairs in order. Now, with newer targeted treatments, outcomes are improving for most of us. I’m a beneficiary of that. It’s just the luck of the draw–nothing to do with me.

Over time, what I came to think of as Cancerland became populated with people I never would have met if I didn’t have cancer: The wise healer who runs the free support group in Boston for women with advanced cancer that I attended every week, bloggers and authors, my wonderfully loving and supportive care team, women who would have been good friends if we had met in some other way, people working to make life better for people like me, and people who died from their cancer. There are also the crusaders, most of them presumably sincere, who think cancer would be easy to cure if only a vast medical establishment were not acting to protect its profit margins, or who think “natural” methods of dealing with it are more likely to work than evidence-based medicine. So many new people, new ideas, new ways to see the world.

I refuse to say that having cancer has been good for me. But I have to admit I have grown. I am much more focused on being rather than doing. I am both more open and vulnerable, and more resilient. I am constantly asking myself, “Is this a good use of my time?,” and I change what I do, or how I think about what I’m doing, based on the answer to that question. I still have goals that I’m working toward, but I am spending much more time savoring the journey, with less anxiety about the destination.

I worry a whole lot less. This is my one, irreplaceable life. And no matter how hard I try to control the outcome I’m going to die, most likely sooner rather than later. So I’m accepting the things I can’t change as well as making changes that will help me find healing and wholeness. My wholeness does not depend on my physical condition. It comes, ultimately, from loving God and God’s Creation, especially the people in my life. It comes from loving what is.

Finally, I see myself as carrying on a kind of ministry to anyone who feels broken, or dead inside, or abandoned. I don’t hit anybody over the head with it. I’ve always thought the best kind of evangelism is a life well lived. When people find out I have stage IV cancer they often ask me how I “do it.” Then they might tell me what’s killing them, and I tell them what’s keeping me alive right now. Certainly the main thing is medicine. I go in every three weeks for infusions. I will be in treatment for the rest of my life. But the rest of it is choosing, as much as I can, in every moment of now, to be as fully alive and fully human as possible.

Edited 3/21/16.

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