Thursday, September 22, 2016

Reading & Writing Cancer

You would expect Susan Gubar to be a good writer. She is a Distinguished Emeritus Professor of English at Indiana University. So yes, an English teacher should know how to compose a compelling lead, and how to structure sentences, and support and illustrate an argument.

But Gubar’s gift to us in CancerLand is that she brings her writer’s gift to some of the most unspeakable parts of cancer. 

Gubar was the author of seventeen academic books, but her first book about cancer was: Memoir of a Debulked Woman: Enduring Ovarian Cancer.

In that book she made us care enough about her—and other women--to stay page after page through descriptions of surgery, depression, medical negotiation and treatment mishaps. We cared about her and we learned exactly what treatment for ovarian cancer looks like.

We also got to read her New York Times “Living With Cancer” column—where she brought practical info, education and the unanswerable questions too. Those columns helped patients, caregivers and medical specialists. Always of service, and always good writing.

And now, a lasting and last gift, in her last book: Reading & Writing Cancer-she teaches us to fish (and write) by showing how literature about illness and cancer can give us perspective and language, and also, crucially, she invites both the experienced writer and the “Oh, never me” writer to begin writing about our own cancer experiences as a way to heal.

The healing may be of the physical cancer, or of the acceptance of a terrible diagnosis, or of the grief, or over the existential reality of a body’s limitations. 

This story book and writing manual and teachers tool is a final gift, and our challenge to take up the pen that Gubar has laid down, as she encourages us to keep reading and writing about cancer.

Monday, September 12, 2016

Changing Normal: One Couple. Two Cancers.

In her new book, “Changing Normal” Marilu Henner—(actress, author, wellness expert and radio host) tells the story of a mid-life romance and how love and an alternative diet and treatment has helped her to help her husband beat cancer.

It’s a story about alternative treatments for bladder and lung cancer, and a story primarily
about how to advocate for truly integrated medicine. Henner is known to many of us from the TV show “Taxi”. And in the book she is just as loveable and a lot fiercer about taking on the medical establishment.

When, early in their relationship, Michael is diagnosed and surgery is prescribed, Henner’s experience as a wellness advocate comes to play and pays off.

While interesting as a book about alternative care for cancer, the best of this book is about patient/caregiver partnership, and how a couple ideally teams up to fight for both wellness and their relationship. It is a book about how couples can create a powerful caregiving team, and present that strength to the medical establishment—to push for more—sometimes better-options. 

Monday, September 5, 2016

Money and Cancer -- Double Taboo

Yes—Money and Cancer: two great taboos that we encounter in CancerLand.

Many of us know the feeling when we experience people turning away from us or being insensitive because they don’t know how to talk about or ask about our cancer or our loved one’s cancer.

But money is the place where most of us turn away. It’s a different kind of uncomfortable. We are reluctant to ask about prices, costs, expenses and who is willing to ask, “Can we afford this?” when the conversation is about the
cancer care of a loved one?

Our culture sets certain taboos on talking about money in general, and then mix in a crisis, a hint of death, some judgments about family issues, illiteracy around savings, spending…and you have a great big silence.

One frequent blind spot is assuming that if you have health insurance you are all set. But, and you know this if you have cancer: seeing a doctor several times a month can mean a great big bill of co-pays. You can be in debt even before chemo begins. And, what people with cancer know that those who haven’t been there is that chemo is expensive stuff. Even with so-called, “good” health insurance that’s a lot more and bigger copays every week. It adds up fast.

That silence around money and the cost of cancer care can hurt everyone: the patient, the caregivers, the kids and extended family and friends as well. Money talk is just plain fraught. But it’s crucial. And there is help –both financial help and help in how to talk about it.

CURE Magazine has published a special report called “Paying for Cancer Care.” It’s a tremendous resource and it’s free as are most of the resources they provide in the print and online publication.

Here are some of the articles in the publication:

Financial Fix: A cancer diagnosis could break the bank, but it doesn’t have to.

Risky Business: Concerns about insurance should be addressed early.

Debt Crisis: Coping with cancer’s financial aftermath calls for creative solutions.

Money Madness: Worry about the cost of care takes an emotional toll.

That’s just a start to what is available in the special report, “Paying for Cancer Care.”

You can see the publication and all the links online at www.curetoday.com

You should also not be shy or reluctant to talk to the financial folks at your cancer center. They have some euphemistic titles like “Financial Resource Staff” or “Financial Planner” but just come right out and ask, “Who do I talk to about how much all of this costs and how I make a plan to handle the financial side of things?”

Don’t let money worries or thinking that that help is for other people stop you. The financial hit is one more bad side effect of cancer. But not getting the guidance will just make it a scarier family issue and it might even make you feel distant from friends.

Sunday, August 28, 2016

Why Write About Cancer?

I have been asked many times why I write about cancer, and I have told the story of this blog—about how frustrated I was when no one would talk to me or my husband about sex while facing cancer.

And I write a lot: I write the blog, “Women in Recovery”, and the books: “Looking for Signs” (A collection of essays) and “Out of the Woods” (about women in Twelve-step recovery), and
recently, “Never Leave Your Dead” (about military trauma and family trauma and redemption).
And I write newspaper columns for the Albany Times Union and many other papers...

But why write at all? Maybe this quote from James Baldwin says just enough about why:


“You write in order to change the world, knowing perfectly well that you probably can’t, but also knowing that literature is indispensable to the world…The world changes according to the way people see it, and if you alter it, even by a millimeter, the way people look at reality, then you can change it.”   (James Baldwin)

Sunday, August 14, 2016

Beach Surrender

We went to Cape Cod this weekend. In the morning I go to the beach alone to pray. My favorite beach prayer involves writing the names of each person I’m thinking about on the edge of the shore and watching as the tide comes in and gradually takes those prayers out to sea.

This weekend I wrote the names of all of our family members --his and mine, adults and kids, parents, exes, kids and their spouses too. I wrote his name and my name and the people I work with. It’s a lot of writing and a way of surrendering each person that I love
and even the people that I fuss with in my head.

 I live in the gap between wanting to make a complete surrender, making that surrender for an instant or a moment and then, seeing, even as I walk aback to my car how worry returns and how quickly my tendency to control is already back in my head.

Surrender is such an imperfect process but it is a process. I really do wonder about people who say they made their surrender once and it’s all done. Do they really never worry again? Worry means that I still think I can affect an outcome. Curiosity might be the antithesis of worry. Being able, after surrender, to wonder: “I wonder how God is going to play this one out?”

Maybe this worry of mine too is something I need to surrender.

Over and over I surrender and return. It’s familiar. The ocean’s rhythm: in and out, in and out, washing, soothing, wearing me down. Creating surrender.

Sunday, July 31, 2016

Immunotherapy Uses Drugs to Boost Immune System for Cancer

This weekend's New York Times featured the second article by health writer, Denise Grady on the
Denise Grady, New York Times
increasing practice of "Immunotherapy". Currently, an experimental treatment, immunotherapy uses drugs to boost or challenge the patient's own immune system to fight cancer.

Here is the article in this link to the New York Times:

http://nyti.ms/2aRJLQC

Tuesday, July 26, 2016

Baseball is Back

Baseball season adds another layer to our lives. We both love the game and are able to
teach each other. He knows more about NOW and I know more about THEN. I love the history, and he loves the Yankees. It’s a source of humor, anger, passion and of competition. It’s a source of metaphors too—many of them sexyl --which makes it even more fun.


Here’s to getting to third base, and charging home with a scream and a cheer!