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Fear Expanded

Posted 1/12/2013

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  Since writing yesterday's entry about fear, I have heard (thank you) from several of you who were glad to have the topic raised. Since the earlier blog was a relatively brief introduction to a recent study, I know that there is much more that I can say. To be honest: this is  repeat of the second or third entry that I ever made in this blog; that was in March 2009, and the topic continues to be of paramount importance. Whether we think and talk about it or whether we try to deny it, fear is likely lurking somewhere nearby.

Let's be honest: fear is THE issue for most women with breast cancer, actually for most people with cancer. Fear takes many forms, but all of us experience some flavor of it from the first moment of diagnosis.  Through the years, I have learned that saying things aloud (or writing them) does not make them more likely to happen, and that we can provide incredible comfort and support to each other. Whenever I talk with a woman individually or whenever one of my groups discusses fear, we begin to feel a little less alone. Most of the time, we also begin to feel a little less afraid.

I have had many conversations this week about fear: fear about a new diagnosis, fear about a new recurrence, fear of surgery, fear of chemotherapy, fear that a changed body will repulse a husband--but, most of all, fear that breast cancer means death

Women who have been diagnosed with metastatic or Stage IV breast cancer usually understand that their disease is not likely to be curable. Women with earlier stage disease can honestly hope that their breast cancer will not return after treatment, and that their largest challenge will be living with the threat and the fear. The catch is that none of us ever has a promise that the cancer will not return; being anxious about every cough or ache and pain is not neurotic, but is a reality-based concern that there could be a big problem. Having cancer is likely to turn all of us into hypochondriacs, hyper alert to every physical symptom and reluctant to trust our bodies and believe in our good health.

Learning to live with this real threat without being consumed by anxiety and sadness is often the most difficult task before us. I am certain that the goal is to live as though the cancer will never return. Living "as if" is easier said than done, harder some days than others. Beyond having appropriate treatment, there is nothing that we can do about the possibilities. It is out of our control. Most certainly, however, if we permit our fears to dominate our days, the cancer wins. Whether or not it does return, we have wasted our time and our lives if we live them in sorrow and fear. The fact is that, if the cancer does return, we will most certainly have to deal with it then--but we do not have to deal with it today. We must somehow cultivate Scarlett's attitude in Gone With the Wind; she promised herself that she would survive each day and leave the worry to tomorrow.

So, how do we begin to do this? One useful and practical tool is the "Two Week Rule." Most oncologists will tell you that it is not necessary to call about a symptom unless it persists for two weeks or longer. Most don't. Obviously, this does not apply to potential emergencies--don't wait five minutes to call about chest pain or sudden double vision or something else that you know is possibly acutely serious. This rule does apply to lower back pain or hip pain or a lingering cough. Note when you first noticed the problem, make a note in your calendar two weeks hence, and then try to ignore it until then. Chances are, when the marked date comes around, the symptom will be gone.

It can also help to really think about what you are afraid of. When I meet with women who have Stage IV breast cancer, this is a common dialogue. If you think more about your fear, it is possible to identify the specifics. Rather than just thinking: "I am afraid of dying", try to tease out what is the real worry. Are you afraid of pain? Of being a burden to your family? Of being alone? Of leaving your children? Although there may well not be comforting answers or solutions to your fears, it almost always helps to think specifically about them and then try to imagine what might help. If, for example, you are most fearful of pain, you can talk to your doctor about it. There are many medications that can be used to control pain for people who are very ill with cancer. The trade off, frankly, is sometimes alertness--pain medications make you sleepy. If, however, you are willing to be sleepy or asleep, it is likely that your doctor can virtually promise you that you will never suffer. If you are most afraid of leaving your children (and I am very aware that there are no words of comfort for this grief), it will help to consider concretely what would happen to them. Yes, of course, they would be terribly sad, but think about who would continue to care for them, who else loves them, how you can prepare any legal or financial documents that will protect them.

As time passes, most of us find that the fear diminishes. It is always lurking somewhere, ready to jump out of dark corners, but it attacks less frequently. Even women who are living with metastatic breast cancer find ways to cherish and celebrate their days and not be always afraid. There is a wonderful saying: Courage is like a muscle. You have to use it to strengthen it. Or, another: Perhaps courage is fear that has said its prayers.

Fear is human. We will sometimes feel it like a wild animal on our backs, claws digging in. At those moments, I remember the words of Audre Lorde: "When I dare to be powerful--to use my strength in the service of my vision, then it becomes less and less important whether I am afraid."

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