Archive for January, 2016

posted by Amy on Jan 10

I just finished reading Ursula K. Le Guin’s novel, The Left Hand of Darkness. One of the characters talks about how both atheists and theists are focusing their attention on the same subject. God is their ultimate concern, whether as believers or deniers. “To oppose something is to maintain it.” That tension, that tug-of-war, will be perpetual. If opponents of any sort want something different to happen, they have to choose a new path.

There is a “religious” cult in the book that won’t say whether they believe in a god or not. The strength of their sect comes from learning which questions are unanswerable, and then not answering them. As for answerable questions, they will, for a price (set on a sliding scale depending on the wealth of the questioner). engage in a practice called Foretelling. But they explain that their purpose in doing so is to demonstrate the uselessness of having the answer to the wrong question.

This issue comes up a lot in Cancerland. People want to know their odds of recovery, and how long they are likely to live. It’s a natural impulse, and there’s nothing wrong with it, but it’s the wrong question. I sometimes ask people what they would change about their lives if they knew how long they were going to live. The next question is, if it’s important to you, shouldn’t it be important in and of itself, without regard to how much time you have left?

Anne Lamott in Bird by Bird suggests we frequently stop and ask ourselves if what we’re doing at any given moment is what we’d be doing if we knew we were dying tomorrow. That doesn’t mean we should live every day as if it were our last, but it does provide a metric for checking in with whether our actions are congruent with our values. No matter what you think you care about most, the life you have is essentially the life you’ve designed for yourself. The things, ideas, and people to which you devote the most time and energy are actually what you really love. And hate is not the opposite of love. If you’re putting energy into it, then it’s your real purpose in life. “To oppose something is to maintain it.”

I don’t believe we give ourselves cancer. I don’t believe we can “beat” it with “positive thinking.” But I do think cancer can be understood as a messenger. My body had something to tell me.

Last year I noticed I hadn’t died from cancer yet, and I felt stuck. It’s not that I was sitting around waiting to die, but I also didn’t have much intensity of feeling about where to go from there. I realized I didn’t know what I really wanted or needed. I was procrastinating, spinning my wheels. I entered counseling intending to address some very old, very painful truths about my past. I don’t know why it’s healing to say out loud (or write about and then discuss) things that I had never before told anyone, but, with the right therapist, it is. She gave me understanding, encouragement, and acceptance. She helped me see my past more stereoscopically and holistically. She encouraged me to ask for what I want and need. She supported me in my efforts to understand and forgive–myself and others.

One of my most significant insights was that cancer was offering me a way out. If I was simply too tired or discouraged or fearful to go on, then I didn’t have to. But, at least for me, this “way out” was not a new gift, but was instead a manifestation of the fear, rage, and anger in my family of origin. It was a time bomb that had been ticking inside me all my life. To be sure, I had been working for much of my life to defuse it–learning healthier habits, making healthier choices, actively seeking wholeness and healing, but I hadn’t cleared it all out yet.

Erich Fromm says some people are motivated by “necrophilia,” not in the sense of being sexually aroused by dead bodies, but in the sense of loving death. The opposite of necrophilia is biophilia. Biophilic people are trusting, courageous, openhearted, generous, and gracious. They welcome spontaneity, laughter, playfulness, and surprise. Necrophilic people are suspicious, mistrustful, stingy, controlling, narcissistic, destructive, and angry. They are fundamentally insecure, and they feel threatened and terrified by anything they can’t control. Although there was some beauty, laughter, spontaneity, and warmth in my family of origin, the primary orientation was necrophilic.

Until I did that work with a wise and loving therapist, I had not allowed myself to want to be well. Most of my life I settled for less than what I really wanted and needed. Most of the time I didn’t even know what I wanted. I had not had much practice in taking care of myself or advocating for myself. I was raised on betrayal, so having my body betray me was really just more of the same. I used to encourage my children to ask for what they wanted, and not deprive themselves of the chance to get it. I preached that, but I didn’t practice it. Now I know. I want the cancer to go away and not come back. I want to have a strong, healthy, body that is free and clear of disease.

I want to live fully and intensely, with as few regrets as possible. I want to be open to new ideas, new knowledge, new possibilities. I want to be a light to other people as they seek their own mission, their own bliss. To the best of my ability, I’ve already done that. But I want more.





posted by Amy on Jan 3

A woman I know died of cancer recently. I missed her memorial service because I had chemo the day before and just didn’t have the energy to leave the house. I know she’d have understood. Her illness and treatment side effects made it impossible for her do do much of anything. She lived 20 months after being diagnosed with a neuro-endocrine tumor in her mediastinum (chest) that had metastasized to her spine. The way she found out she had cancer was from injuring her back dancing vigorously. She had a Caring Bridge site where she, her husband, and her children posted often. I enjoyed reading their posts. It’s a close-knit family of amazing writers. They seemed to be coping well, under the circumstances. Their lives had changed dramatically, and they focused on loving and supporting one another. Whenever I commented I tried to balance other people’s exhortations to “be strong” and “fight.” Having metastatic cancer not a matter of “winning” a “fight.” Rather, it’s a matter of choosing how to live, as well and as honorably as one can. For nearly everyone with metastatic cancer, the outcome is never in doubt. Only the exact contours are unknown, which I consider a blessing.

At about the same time, a long-time member of one of my online groups died from the same type of breast cancer I have. She was a very knowledgeable and supportive group member. She posted frequently with encouraging words and suggestions. She didn’t complain about her situation. She kept up on new discoveries, and never quit looking for ways to live with her cancer rather than die from it. She will be sorely missed.

Both women played the hands they were dealt with grace, grit, gratitude, intelligence, and style. Being diagnosed with an incurable, terminal illness does have a way of focusing the mind. And people all make their own choices about how to use the time they have left. I try very hard not to judge. It’s none of my business. And yet. . . . .

I think cancer cause activism is misdirected. Raising “awareness” and trying to raise funds for research to benefit a specific type of cancer is based on a false premise. It comes from a laudable desire to help, but it misses the point. Our market-based, hyper-individualist culture blinds us and distracts us. A public health issue as enormous as this should be addressed at a macro level. The purpose of government is to take care of things that can’t be effectively addressed at a more local or individual level, especially things that are not solvable with private enterprise. The budget for the National Cancer Institute has not been increased in over ten years. That’s incomprehensible to me.

If a neighbor’s barn burns down it’s effective and appropriate for everyone in the neighborhood to get together and have a barn raising. But if, as I think, every one of the 330 million people in the U.S. has been affected by cancer, then the only sane response is to do more high-quality basic research, unconstrained by market competition or the need to produce quick results. (One of my favorite sayings, from when I was married to a research scientist, is “If we knew what we were doing it wouldn’t be research.”) That’s how the cancer drug that’s doing a bang-up job on my cancer right now was discovered. We, the people, paid for the NCI to go out looking for new medicines, and a great cancer drug called Taxol was extracted from the bark of the Pacific Yew Tree. The way for scientists to benefit from each other’s findings is to eliminate the profit motive. Publicly funded pure research is the only way we’ll make significant progress on a problem of this magnitude.

I am not happy about the fact that approximately 39,000 people die each year from metastatic breast cancer in the U.S. Of course not. But, worldwide, 30,000 people, many of them children, are still dying every day from simple, easily preventable causes like dysentery. We could be saving millions of people with relatively trivial investments in water, sanitation, vaccinations, and hydration therapies. Worldwide, most people get no cancer treatment at all. They don’t even get pain relief when they’re dying. They also die from HIV/AIDS, tuberculosis, malaria, and other infectious diseases that we have the technology to treat or prevent. Compared to what the U.S. spends to incarcerate its own citizens and wage war on a goodly percentage of the rest of the world, the cost is minuscule. If we really believed in human rights, and that all lives matter, we’d be behaving in radically different ways. That bothers me far more.

I live in the U.S. and I have great health insurance. It costs a fortune to keep me alive. Sometimes I even wonder if I’m worth it. I certainly don’t feel like a victim.

Edited 1-4-16

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