Friday, December 30, 2011

Alas...a Writer

"When a writer is born into a family the family is finished."
                                                              --Czeslaw Milosz

Monday, December 26, 2011

Kids and Christmas and Thanks

How many people, for how many years, said "Give time time" when we talked about John's kids? And it was true. It has been hard for me to give them  their time and to give up my  resentment that they stayed away when he was so sick. I had so much fear for him--and for them--that they would miscalculate their anger and his diagnosis--and miss the last years of their father's life.

For Christmas they were with us. It took teensy baby steps and lots of counsel from people smarter than me in these matters but the day came. Time took time. That's the hardest part of it, isn't it? And much harder when you feel there may never be enough time.  In Cancer Land time is our hope as well as our enemy.

The best help came from someone much younger--a good friend whose parents have both been remarried twice. She had many years being "the kid".  Her wise counsel to me was this, "Never say we." She was right. She told me, "I always found it easier to meet my mother/father's boy/girl friends as people rather than as future step parents...when you talk to them pretend John is not even in the room.--and never say 'we'." Her wisdom came from painful experience and we are the beneficiaries.

It's my hope that this blog can benefit you too--that our experiences and our pain can be transformed to some good.

Wednesday, December 21, 2011

Oh Christmas Tree

I am grateful for another Christmas. I am grateful for Christmas without chemo. I am grateful for Christmas with most of the family speaking to each other and even for those not speaking there is a kind of benign detachment. I am grateful that we are both well and that we can put off all medical appointments until the New Year.

Gifts are purchased. Cards written. Invitations out for our annual New Years Day party. Tomorrow I’ll work a long day of Adopt-A-Family—getting gifts to others—and with much less resentment this year—and much less drama. Incredible gratitude for that.

Friday grocery shopping for the Christmas dinner with our nearby family. Saturday church and singing carols. But tonight—oh tonight—

The Christmas tree!

Monday, December 19, 2011

Bonnie Prudden

In my early 20’s I was a dance student and worked part-time teaching dance to kids and adults to pay my way. I worked a lot at the YWCA in Pittsburgh and when I had time I took the other classes they offered. Several of the fitness teachers were crazy about a woman named Bonnie Prudden who had a new style of exercise. We all practiced it and we exercised to her records. Yes—we exercised to records—33rpm—and listed to the instructions and looked at photos on the album cover. Seems crazy now that we have videos, cd’s and YouTube exercise teachers.

But Bonnie was something else. Her exercise was aerobic and dancelike and strength building and she was funny! She talked about women’s real bodies and real lives as she taught.

The YWCA teachers—all older --invited me along on a trip to Connecticut to spend a week with Miss Prudden. We trained with her and were exposed to a new course she was developing called “Sexercise” so radical and amazing. Again, she talked about real life, real women’s bodies and real women’s sex life—and the impact on marriage. My eyes were big!

On the way home with women who were “older” 40’s and 50’s I heard those women talk about their marriages and sex lives. Again eye opening. I’m sure that those “gym teachers” and Bonnie Prudden reinforced my belief in sex and sexy marriages as healthy, fun and essential to happiness.

Bonnie Prudden died on December 11th at age 97. Her New York Times obituary says she was still exercising every day.

Saturday, December 17, 2011

Looking for Signs

I laugh now at how many times in my life I have prayed for a sign to let me know if I was on the right path or for help in making a decision. In very difficult moments I have begged for skywriting from the universe and just last week I told a friend that I’m still waiting for an envelope from God with my name on it. Maybe I watched too many episodes of Mission Impossible as a kid but part of me wants instructions that spell out very clearly what I should do with my life.

I know God doesn’t work that way, but I also know I’m not alone in wanting him to. Some people flip coins or watch birds or follow the crude metals index. Others keep psychics in business and ensure that books on spiritual guidance top the bestseller lists. I’ve tried it all and I’ve been to Tarot readers, thrown the I Ching and I have a well-worn set of Rune stones.

Years ago when people close to me were dying and I was tearfully demanding to know God’s will, a friend who was more experienced in grief chastised and reassured me by saying, “Gods will is what is”. The simplicity and profundity of that statement silenced me for a while.

But I come back again to wanting to know, and often it’s at this time of year and there’s a good reason. As the winter begins and we are faced with dark and cold there is a pull from deep in our bones that drive us to seek light and answers. The need for light at this time of year is so great that we adapted culturally to give it to ourselves. We have Solstice and now Hanukkah and then Christmas, all great stories about finding light.

The part of the Christmas story that has always meant the most to me is that of the three wise men making their journey, traveling on a hunch, a belief, and their deep wanting. They had studied the sky for years and then they saw their sign.

In his poem, Journey of the Magi T.S. Eliot wrote: “At the end we preferred to travel all night, sleeping in snatches, with the voices singing in our ears, that this was all folly.”

Of course that is the problem with star following. You just don’t know. We see this most painfully now looking at the news. Stories of young men and women as heroes in Iraq and others, the same age who commit terrible crimes. All of them following their stars. But how do you know until you show up whether there’s going to be a baby or a bullet?

So the wise men’s lesson is all about faith: We do our best, we study, we consult with others, we try to be wise men and women, but we have to get on our camels, bring our gifts and hope we are doing good.

This is solstice week and these are our darkest days. We cope in the most ancient of ways. We go toward the light--to neon and the mall, to crowds of shoppers, even as our ancient relatives were drawn to stars and the fire.

Through all of this we’ll read our horoscopes. We’ll hope our loved ones will be spared the only thing that no one can be, which is death. We’ll look at the night sky and try to believe. No wonder a baby born in a barn is a great story. No wonder we look for signs.

Wednesday, December 14, 2011

Ways to Go

If you have dealt with cancer, as patient or caregiver, you know the questions from friends and acquaintances: “Is there a family history?” “Did she smoke?” “Wasn’t he overweight?” “I think he had a lot of anger?”

Translation: There must be some reason that you have cancer and I won’t get it. However, we have numbers to help us sort the crowd. And to remember that cancer is not a moral issue or a character weakness or a personal failing. Maybe this also helps if you are asking, “Why Me?” In truth, why not you?

From the National Safety Council we have statistics that reveal what holds the greatest chance of ending a life. Here are some of the lifetime probabilities of a US resident dying. These are expressed as odds of dying:

Heart disease: 1 in 5

Cancer: 1 in 7

Stroke: 1 in 24

Falling: 1 in 128

Pedestrian accident: 1 in 626

Drowning: 1 in 1,008

Airplane accident: 1 in 5,051

Lightening: 1 in 79,000

So this tells us that cancer is very common with little discrimination and so shouldn’t we all be learning more? It also tells us that heart disease should be our biggest worry, so swap out those pink ribbons for red ones. But the biggest thing we need to be facing is our own mortality. The total odds of dying, of any cause, are 1 in 1. 100% of us will die. You’d think, given that, that we’d get a little bit better at dealing with it.

Sunday, December 11, 2011

Cancer in Comics

Graphic novels—also called “comics” are becoming more popular with readers of all ages. Not at all cartoon, they can be serious, funny, educational and inspiring. The format of comics adds new dimension to a story by combing body, face, dialog and set, and by using shape and graphic design to maximum effect.

There are two graphic novels that I love:

Marisa Acocella’s “Cancer Vixen” came out two years ago and tells the story of Marisa’s breast cancer diagnosis and relationship with her new fiancé as they go through a fashionable Manhattan breast cancer story. If there is a girly-girl breast cancer story this is it.

This week I read “Cancer Made Me a Shallower Person” by Miriam Engelberg. I am highly recommending this book. It was published in 2006 and I regret not having this on the CancerLand Reading list before this.

Engelberg is a cartoonist living in San Francisco and her book is a memoir created by a series of comics that take us through her cancer journey—first diagnosis, treatments, family, workplace, second diagnosis, more treatments and best of all her internal reactions. Now, this may seem so crazy but this is a really funny and inspiring book for anyone to read. At the center of the story is the way many of us react to difficult things. For Engelberg it’s cancer, for you maybe it’s divorce, aging, trouble with kids etc.

Even crazier, this book is so funny while being serious, that I think—call me crazy—this could be a holiday gift for someone with cancer. Anyone in CancerLand—caregivers too, will say “yep, yep, yep”, as they follow Engelberg’s funny drawings.

Thursday, December 8, 2011

Helping Hands for the Holidays

If you are a family caregiver you know --or are learning --that you can ask for help with many basics. Most family and friends think first to offer a meal and the casseroles will  arrive but you can ask for --and they can help with--so much more. (Besides lasanga is only good the first 20 times). You also know that you can ask for rides, laundry, pick ups at the pharmacy, grocery store and my favorite, the dry cleaner--if you are a working caregiver please let a friend be in charge of your dry cleaning. Some folks will help with light housekeeping or baby sitting, maybe doing homework or fun activities with children.

But the holidays are here: Hanukah and Christmas are right around the corner. No one expects you to entertain or be super celebratory--but you don't want to miss the holidays entirely. Hence the big stress add-on.  Chemo at Christmas will blow every caregiver higher than the first star in the East with stress.

So think about this: You can ask family and friends to help with Christmas tasks too: shopping (hand over the list of basic gifts-- the ones you can name by make or brand), cookie making, gift wrapping, set up the tree, decorate, and going to the post office. I know that everyone is busy but all of your helpers are going to the mall, the card store, the hardware store and the post office anyway. Let them do some of it.

You'll want to keep some holiday tasks for yourself--you'll feel better that way--but you can shop for the closest loved ones (shop online) and you can put the star on the tree or light the candles each night. But you don't have to do it all--or feel bad if you don't. The helpers will really, really feel so much better about themselves if they help you at this time of year--so give them the gift of helping you.

Tuesday, December 6, 2011

Living with Uncertainty

Today at the To Life! Women’s Health Conference I heard a great speaker: Rachel Sperry, MSW from the Devereux Center for Children’s Resilience. Rachel is a cancer survivor—diagnosed at 33 when she was a newlywed and in the thick of a new career. She talked about learning that although it feels like the bottom falls out when we are diagnosed with cancer, “there really isn’t a bottom there anyway”; we are always—even when well—living with uncertainty.

Her talk was inspiring and filled with insight and humor, and practical steps to build resilience in adults—with or without cancer. These are the ingredients for a resilience recipe:

Relationships--friends and/or family

Have a hobby or hobbies

Know you are loveable—if you don’t get the help and do the work to change that.

Have a mentor or guide—in life as well as in work

Take initiative—act on the world rather than let the world act on you. Speak up, say No; say Yes.

Develop or recognize healthy self-control—know your limits; set limits for yourself; learn how to calm yourself.

That’s just a tiny bit of Rachel's wisdom. Keep an eye out for Rachel Sperry speaking or presenting. I’ll certainly keep her events posted here for all of us.

Sunday, December 4, 2011

The Bridge of San Luis Rey

Most of us know Thornton Wilder from the play, “Our Town”—every town and every high school does “Our Town” sometime and it’s worthy. I keep an excerpt from Emily’s after death speech on my wall at work—to remember.

But here is a bit more Thornton Wilder that is also for us in Cancer Land. This is the last paragraph from his novel, “The Bridge of San Luis Rey:

“We ourselves shall be loved and then forgotten. But the love will have been enough; all those impulses of love return to the love that made them. Even memory is not necessary for love. There is a land of the living and a land of the dead and the bridge is love, the only survival, the only meaning.”

Friday, December 2, 2011

Close to the Bone

I’m preparing for a cancer caregiver workshop next week and found a book that I am recommending. It’s not new but it’s new to me. The book is “Close to the Bone” by Jean Shinoda Bolen, MD. I never discovered this book, written in 1996, though her earlier book, “Goddesses in Everywoman” is a favorite of mine and my copy is bent and starred and underlined and broken from photocopying.

“Close to the Bone” is subtitled, “Life Threatening Illness and the Search for Meaning”. This book jumped out at me because the other book that I’ll use in the spiritual workshop is Victor Frankl’s, “Mans Search for Meaning”. Tragedy and meaning; suffering and meaning; cancer and meaning. The work of finding meaning or sometimes making meaning out of tragedy or suffering.

It reminds me of the quote by Fredrich Nietzsche, “He who has why to live can bear with almost any how”. But Bolen is talking about not just why to live but why suffer and the value of being brought “close to the bone” or close to our soul’s needs by an illness—our own or someone we love.