Have you heard the saying … “Two things that are a certainty, death and hurricanes.”? Oh wait, it’s death and taxes, right?! Clearly I’m not up on my sayings.
But that’s what I’m thinking about … death and hurricanes.
As I write this post, thousands of people in Florida and elsewhere are dealing with the aftermath of Dorian or preparing for it to slowly make its way ashore. I moved to Florida in 1996, so I missed Andrew, but have weathered quite a few hits, direct or otherwise, since then. The level of panic and angst experienced by so many here in South Florida is truly rampant and I’ve noticed that the feelings are strongest with those who are experiencing a hurricane for the first time and those who had previous bad experiences.
The anticipation of a hurricane coming is rather excruciatingly boring after one gathers the appropriate supplies, but once a hurricane is coming, it’s inexorable movement is unavoidable. Hurricanes destroy so much and everyone has to hold on for the ride at some point. You can’t stop it, you can’t change it, you must simply hold on to something grounded until it’s over. There are lulls, like the eye, and bands that bring waves of rain and wind with breaks in between. It’s overwhelming and powerful and fills every inch of the visible sky.
Hurricanes are actually quite a bit like cancer.
We are all at the mercy of its whims and it is an experience that one must survive by putting one foot in front of other, often while being flattened by the treatment and the side effucks (my new word). To continue the analogy, I’m thinking that the treatment is like the rain and the wind is like the side effects. Our vision is filled with cancer and treatment and life expectancy and all of the detritus that comes with a terminal illness that has many chronic features. At the same time, the bond that develops between fellow sufferers is similar to the bond between people who have clung to each other for hours and hours to survive a hurricane.
The bonds amongst those of us with Stage IV metastatic breast have been tested recently by a long list of recent deaths. We lose men and women regularly in the metastatic community but this past week to 10 days have been singularly brutal. One after another, the announcements keep coming and many of the deaths are young people, women with so much left to accomplish.
I read once that there are three deaths, the first when the physical body dies, the second when the body is buried, and the third when the person’s name is no longer spoken. I wrote about this phenomenon earlier this year when my sister buddy Kari Rousch died. So long as I’m here, her name will be spoken.
So long as I’m here, I will speak these names too:
Amanda de Fiebre
Shannon Weber Lewis
Judy Hallin Erdahl
I am sure there are others I’ve forgotten to mention. Please feel free to add names in the comments, to hold some space for their families and the community at large. We need it, badly.
These women were young and more experienced, some with hair and some without, they were black and white, wealthy and not so wealthy, gay and straight, educated and not so educated, with children and without children, with partners and without, living all over the world. Breast cancer does not discriminate. I didn’t know all of these women personally, but their lives touched mine. I see their experiences and their families and I see myself and my family. It is sobering, it is painful, it is sad …
… and it PISSES me off.
We lose 116 men and women each day in the US; men and women who are not done, who have no desire to leave this world. Why? Because they run out of treatment options, because their bodies succumb to the ravages of this disease and the treatments, because the doctors only have so many tools at their disposal.
Each of these deaths could be prevented with research. Research to develop and test lifesaving medication. I will be in their shoes before much longer if I don’t have more treatment options.
Today, on Labor Day, I’m rededicating my labors to fight for more research, to hold companies accountable in how they treat cancer patients, to speak the truth about living with a terminal illness, to support legislation that will ease suffering, to support the metsters and early stagers in my life, and to live my best life with the time that I have.
Who’s with me?!