At times like these, it's a drag to get out of bed, much less put on your perky face and go to work as Little Mary Sunshine.
In this vein, thought I'd share Barbara Ehrenreich's astringent essay, "Smile, You've Got Cancer," which outlines the relentless pressures on cancer patients to "think positively." The essay was written some years ago, and was folded into her book, "Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America" (2009).
In the book Ehrenreich, who went through breast cancer treatment, gives voice to those of us with serious illnesses who sometimes feel flummoxed or even depressed by the pervasive insistence in our culture to "stay positive."
Positive thinking, Ehrenreich points out, does not prevent cancer nor does it affect its outcome, no matter what the pop-psych gurus say. Her essay takes down the pseudo-science of positive thinking (and she's a scientist, so she's got some creds in that department.) Reading this essay after my ET diagnosis was a breath of fresh air.
For those of us with chronic orphan cancers that are still poorly understood, there's a real temptation to grasp at whatever gets you through. Some folks on MPN blogs and discussions really tout positive thinking as a powerful "weapon" as they"battle" their diseases. Imagining yourself as Xena, ET Warrior Princess, may help some people, so I don't want to mock it (although I guess I just did, sorta). But the down side of defining yourself so closely with your disease is that it not only infects your your bloodstream and general health, but dominates your thoughts as well. Think of it as a kind of psychological metastasis.
Ehrenreich also cautions against those who want to turn cancer into some kind of spiritual epiphany, noting that some writers have claimed that cancer was the best thing that happened to them. Cancer is never the best thing that ever happens to anyone. But, all due respect to Ehrenreich, you do learn things about yourself when faced with a cancer diagnosis. If you're smart, you'll pay attention. For instance, here are some things I learned about me:
1. I'm tough, but I'm not a "fighter." That means I seem to have a naturally high tolerance to pain and discomfort--at least this is what the doctors tell me. I also seem to have a fair amount of will power. Thirty years ago, I gave up smoking and drinking alcohol because COPD and alcoholism run in my family. Today I take my meds, see my doctors when required, and have done what I can to reduce clot risk. I've taken steps to eat better and get more exercise. These are merely prudent steps in preserving energy and quality of life. But fighting to keep breath in my body past the point where life is enjoyable or comfortable? Nope. There'll come a time when I'll throw in the towel. We all will. Nobody lives forever.
2. It's my life, dammit. My dad, who also had ET, was on two forms of oral chemo plus high doses of Coumadin. He suffered from extreme fatigue, nausea and abdominal pain from splenomegaly, and had at least two life-threatening GI bleeds. Dad asked very few questions about his ET and was given very little info. When he went on hospice, he opted to discontinue his treatment for ET. And his quality of life improved tremendously. That's NOT advice to give up your treatment regimen, only to reserve the right to make informed decisions about your care, weighing all factors into consideration, especially your own quality of life concerns.
3. I'm not afraid of death; I'm afraid of someone bollixing up my dying. I've accepted that I'm in the last trimester of my life (and so is pretty much everybody over 60). Lots of people say they want to live to be 100, but having had relatives who made it well into their 90s (and one to 104), I'd say living to be 100 is overrated. For most of these poor souls, the last 15 or 20 was an endless round of doctor visits and monitoring, and going to their friends' funerals. The point where medical treatment becomes the sole focus of my life is the point at which that treatment will end. Thinking about how I want to die--which I hope is a long way off--is as important to me as thinking about how I want to live and remain of service to others. I've made my advance directive and talked to my family about it. I sleep better at night.
4. Life is still good. I actually enjoy living life at a slower pace here in my "golden years." I have more time to do things I want to (read books, knit, garden). I don't feel I have to do stuff I don't want to (wear pantyhose and go to office parties). I don't have too many regrets. My husband is happy, my son is a kind and self-sufficient person, and I have three nice cats (who are still learning to get along). I have the greatest brother in the world. My house is paid for. I have reliable transportation. I have interesting work.
But I've got the right to sing the blues occasionally. So hit it, Joan and Judy, ladies of a certain age who still sound great.
Be well.
2. It's my life, dammit. My dad, who also had ET, was on two forms of oral chemo plus high doses of Coumadin. He suffered from extreme fatigue, nausea and abdominal pain from splenomegaly, and had at least two life-threatening GI bleeds. Dad asked very few questions about his ET and was given very little info. When he went on hospice, he opted to discontinue his treatment for ET. And his quality of life improved tremendously. That's NOT advice to give up your treatment regimen, only to reserve the right to make informed decisions about your care, weighing all factors into consideration, especially your own quality of life concerns.
3. I'm not afraid of death; I'm afraid of someone bollixing up my dying. I've accepted that I'm in the last trimester of my life (and so is pretty much everybody over 60). Lots of people say they want to live to be 100, but having had relatives who made it well into their 90s (and one to 104), I'd say living to be 100 is overrated. For most of these poor souls, the last 15 or 20 was an endless round of doctor visits and monitoring, and going to their friends' funerals. The point where medical treatment becomes the sole focus of my life is the point at which that treatment will end. Thinking about how I want to die--which I hope is a long way off--is as important to me as thinking about how I want to live and remain of service to others. I've made my advance directive and talked to my family about it. I sleep better at night.
4. Life is still good. I actually enjoy living life at a slower pace here in my "golden years." I have more time to do things I want to (read books, knit, garden). I don't feel I have to do stuff I don't want to (wear pantyhose and go to office parties). I don't have too many regrets. My husband is happy, my son is a kind and self-sufficient person, and I have three nice cats (who are still learning to get along). I have the greatest brother in the world. My house is paid for. I have reliable transportation. I have interesting work.
But I've got the right to sing the blues occasionally. So hit it, Joan and Judy, ladies of a certain age who still sound great.
Be well.
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ET is a serious disease that requires specialist care. Discuss anything you read here with your doctor. No comments promoting "alternative" or "natural" cures (yes, this includes Rick Simpson's Oil) will be published.