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Living with Metastatic Breast Cancer

Posted 8/17/2013

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  It is important that I write sometimes about living with metastatic/Stage IV/advanced breast cancer. One of the terrible realities about metastatic breast cancer is that no one wants to think about it. All of the emphasis on early detection=likely cure and the pink ribbons (and you know how I feel about those!) and pretending that huge strides have been made and hardly anyone still dies.....all of this translates to women with metastatic disease feeling as though they are the evil stepchildren whom no one wants to recognize or claim.

  Come October, you will notice that there is virtually no mention of Stage IV disease in the onslaught of perky, peppy, cheerful pink "breast cancer awareness" campaign. This is also troubling because just as there are many women living with metastatic breast cancer, many of them are living a long time. Clearly there is good news and is due to the increasing numbers of helpful treatments that extend life. Note carefully: that extend life, not that cure the disease. I have an incredibly wonderful weekly group for women in this situation, and we had a long conversation recently about this, and someone suggested there should be a Stage V breast cancer. Since Stage IV now often is chronic and long and peppered with stretches of pretty good health and "normal" life, should there be a Stage V to describe the time when someone is actually dying?

  This excellent essay by Jude Callirgos in the Huff Post talks about this life when one is someone on the bridge between good health and death. Whether that bridge more closely resembles the Golden Gate or one of those rope bridges across jungle ravines depends on the moment. Here is the start and a link:

Metastatic in the Land of the Living
My world is going by too fast. The volume is up before I leave my bed in the morning. I try to rein it in, but there is always some invisible force in my head countering that effort; applying pressure for me to keep up, keep moving. It emits a sound that has a steady cadence to it; a forward momentum. And it's loud. At least, to me. So, I get up at 5:00 every morning.
This is not about having too many electronic devices and overdosing on social media by way of my iPad, smartphone and laptop. Today, I am sitting in my peaceful, isolated yard on a gorgeous spring day, when I should be listening to the dependable soundtrack of the Saugatuck River and a few birds chatting around the feeders; but instead, I hear the seconds ticking by with the persistence of a giant metronome, tracking time wasted rather than time fulfilled. I have metastatic breast cancer.


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