Archive for April, 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


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