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Keep the Balm and Carry On

Posted Oct 23 2013 7:45pm
Josh and Jan at his wedding

Josh and Jan at his wedding

I’ve been remiss in writing for some time. Would that I could go back to the days of yore and post regularly about day trips as a woman who thought of breast cancer as part of her history.  Unfortunately, my day trips these days are the kind that keep cancer at bay. I call them life-sustaining day (LSD) trips.

But after a year “playing” at this new normal, I would not have it otherwise. My gratitude journal is chock full of things that happen during each day that make life worth living. Things like automatic weight control, energy sufficient to wash a car, a 30-minute walk around a lake, phone calls and social networking from people who care, monthly lunches of our Fab Four group, safe journeys to and from the center for my drugs of choice, etc. And the etc. is BIG.

What does everyday life look like for someone like me? I get a very good night sleep every night, maybe partly due to the anti-anxiety pill I take, but don’t tell anyone. People tell me I look healthier and healthier every time they see me. Strangers view me as able-bodied and even as someone who still works. I work, but not at the job they would expect me to blabber about. I work at the job of staying independent as long as possible. Taking daily walks when the weather is good helps me out. Eating snacks in between meals works great for loss of appetite. Those with whom I share a meal are accustomed to my slow eating. Some foods and drinks I once fancied now repulse me as they did when I was pregnant. Coffee is one of those; it irritates my stomach and creates nausea. That’s enough to switch me to tea. I’d rather switch than fight. Adjusting to small losses gets me accustomed to the inevitable process of ageing.

Everyday life also involves taking medication regularly to stave off pain and other side effects, keeping nails well clipped, filed and strengthen-polished to avoid nasty splits and snags. I also research health insurance information to see if I qualify for a plan that won’t cost me an arm and a leg because I’m in a high-risk, pre-existing condition pool. Anything would be cheaper, but I still must make sure any plan I choose will include the most important provider in my network, the one that administers my clinical trial drugs. Without that assurance, I can’t afford reducing my premium. Such is the financial life of a rural stage IV American patient in a clinical trial unless work provides a nice plan or the person is independently wealthy or reaches Medicare age.

But life goes on, and it is breathtakingly beautiful. I’m still able to fly, at least domestically. My son’s wedding last month became a highlight, representing young love and the potential of a new generation, something every mother longs to witness. Especially if the woman he marries is a total gem. The only challenge is living so distant from them. I can’t move very far, as I am tethered to my hospital where life-giving drugs reside.

This outpouring of gratitude is not meant to be glib. I have bad days, too. But doesn’t everyone? Sometimes my back aches despite oxycontin and oxycodone. Sometimes my body is as stiff as a starched, port-accessible shirt. Sometimes I whine. And sometimes I cry over losses that seem overwhelming. But my faith permeates all that I do, and I rely on prayer to calm these fragile nerves and their not-so-happy endings.

Many people with advanced breast cancer in my online discussion groups are living proof that this can be a chronic disease, not an ominous death sentence. They are still kicking five years out from their diagnosis, switching to a new protocol when the previous one proves ineffective.  They live long enough to see another generation of drugs hit the hospital pharmacies. Approximately 155,000 Americans live with stage IV breast cancer these days. My doctors treat me as if I will live a long time, concerned about my heart and about skin and colon cancer. They wouldn’t bother if they thought I was about to enter hospice.

The dream of all caring people around the world is to find the cure for cancers that currently have no cure. Some thought I was cured after five years from my initial diagnosis of early-stage breast cancer. I wish that had been true. But seven years from diagnosis it recurred, and then again eight years later. Breast cancer consists of many subtypes of disease, with no one-fits-all sizes. Researchers realize this and analyze tissue samples from various patients to predict who is genetically disposed to respond best. I know the clinical researchers in my case are studying my tissue to determine why I am doing so well and using those results to determine which earlier-stage patients will benefit from the same combination of drugs. The fact that my case is being studied so closely is very reassuring to me, making me feel as though I am helping future generations to stave off this scourge, to allow grandparents to see grandchildren, parents to see their children, whether for the first time or as they grow up.

Denmark is the happiest country on earth , according to the latest studies. The U.S. lags far behind. Also, older, retired adults tend to be happier than younger ones. I’m hoping I can add a bit of happiness to our culture so others can revel in the here-and-now and not suffer angst from envy, strife, impatience, office politics, lack of trust in institutions, long hours, financial uncertainty, and worry about the future. Grasp the moment. Take joy in the changing colors of the season. Study what Danish citizens savor that we don’t. Focus that camera on a detail of nature that particularly moves you or normally gets overlooked. You won’t be sorry.

Keep the balm and carry on!

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