Love in the Time of Cancer

Tips....so to speak...For Prostate Cancer and Sex

2012-01-27T05:10:00.000-08:00

I could not pass this up. The link below is a resource for couples dealing with prostate cancer. And, yeah, its about sex in CancerLand. I just love the directness and reality of these suggestions. I found this on the website of writer Victoria Hallerman, author of "How We Survived Prostate Cancer". Yeah, she says "we"...thats what caught my eye when I was scanning the cancer section of the local bookstore.

I love her book, and will say more about that tomorrow. For today check out the tips on the link below:

http://www.phoenix5.org/companions/10Pointers.html

What You Believe In...

2012-01-25T16:52:00.000-08:00

A quote that I love goes like this: "What you believe in must be bigger than what you are afraid of." I heard a woman named Kim Klein say that in a conference on fund raising many years ago. She was telling a story about how she overcame her fear of solicitation--asking powerful people for money. She said that one day in a fit of terror, about to approach a big CEO, it hit her that she really did believe in the women she was trying to help at her DV shelter, so that had to be bigger than her fear. And her fear decreased that day.

I have applied that quote in my life many times: at work, in relationships, in social settings and now I'm thinking about health and wellness and cancer. Do I believe in God? Goodness? the power of the body? the balance of the universe? Ok, can I remember that when I am afraid?

This week a friend who knows I love that quote pointed it out to me again. I have been wrestling with my passion about caregiving and this cancer advocacy work--do I dare put myself out there? really step up to the plate, and the microphone, with Love in the Time of Cancer? And my friend Martha said, "Diane, what you believe in has to be bigger than what you are afraid of."

My own advice to others hiding in plain sight. That makes me believe in God. And his sense of humor.

When I am the Patient

2012-01-21T05:30:00.000-08:00

Oh humility; oh arrogance. This week I am the patient. Eye surgery this week. And my first inclination is to tell you it's no big deal. There, right there, it begins. The comparison, "Well, it's not cancer"; "Well, it's not brain surgery". Oh Jeez--it's eye surgery--my eye balls--my vision.

Here's what I'm learning: It's so hard to sit still. I'm supposed to rest, take it easy, no stress. Well, this has totally outed me as a workaholic if I had any doubts. I'm also supposed to use four different medicines four times a day and my first reaction is: "What a hassle, must be someway I can condense this?" No, I have not been to medical school but that does not stop me from thinking those instructions are for other people, surely not me. That is a form of arrogance, not to mention stupidity. Did I mention these are my eyes, my vision, I'm playing with?

And for good measure lets add vanity to the humbling mix. I cannot wear makeup for a week and I cannot take a shower for a week and I have to wear big, dorky dark glasses at all times even at night in bed. Actually with the no make-up rule and the no shower rule I'm glad for the glasses.

And oh yeah, I'm not supposed to use the computer too much. But, hey, you can see how well that is going. :)

The Swerve and Pleasure

2012-01-17T17:32:00.000-08:00

I am reading the new book, “The Swerve” by Stephen Greenblatt. “Swerve” won the National Book Award in 2011. Its subtitle is “how the world became modern.” It is terrific and its about the Renaissance and intellectual history and theological history and intrigues of ideas and books. Greenblatt’s earlier book, “Will in the World—How Shakespeare Became Shakespeare” was also brilliant and a finalist for a Pulitzer.

Now I just love this kind of chewy, rich, idea packed reading and I love to grab as much history as I missed in my earlier education—I was in the girl’s room smoking for many history classes I guess—or passing notes about cute boys.

But the reason I want to mention “The Swerve” here is not as a book review—though yes—grab this book. But this book belongs in a story about sex and cancer because Greenblatt explains with a clarity I have never read or heard—why we are so body-denying in our culture. In telling this story of how our thought changed and books were embraced and denied and rediscovered and hidden again he describes the church and intellectual shifts that took away belief in the body as a good thing and in God as a giver of pleasure and how that became disastrously distorted and left us—Western Civilization and Christians in particular --ashamed of our bodies and pain seeking rather than pleasure seeking.

All of that has contributed to shame about bodies, discomfort with talking about our need for and right to pleasure, and bonus for us in Cancer Land: a faint underground belief that illness is punishment. What a set up and what an intellectual and cultural crime.

Gong Show

2012-01-14T14:57:00.000-08:00

I am open to all kinds of healing and it's always my hope that I can find healthcare practitioners who respect and integrate Eastern and Western practices. Years ago I studied Reiki and have used it-quite irregularly--to help myself and others. It's one of those things that you can believe or not because its all to the good, especially when combined with good healthcare practices.

Last night I tried something new called a Gong Bath. Nope, no getting naked or cold. Gong Bath is done with a group of people who lay or sit comfortably while being "bathed" in the sounds of huge (really huge) Japanese and Tibetan gongs. The lights are low, the sounds are not loud at all but you can feel the vibrations going through your body. There was a very brief intro--kind of like a verbal meditation instruction--Relax. Breathe. It was very comfortable and very comforting.

We stayed with the gongs "bathing" us for an hour and then some more brief verbal instructions to return to the present and the now. At the close the Gong Master explained that the gongs--there were 8 or ten of them--were tuned to the chakras of the body/mind and that the vibrations and sensations are intended to heal and align the chakras.

Even if you tend to roll your eyes at this kind of thing it's worth checking out. An hour after work on a Friday night, a cozy room, loving vibrations soothing to the body and mind--that was a Happy Hour.

Cancer in the Movies

2012-01-10T16:27:00.000-08:00

Not so much cancer on TV but we do have some cancer in the movies. They are few and far between but we can find some. Here’s a list of my picks for top cancer flicks:

Love Story

1. The Barbarian Invasions

3. Terms of Endearment

4. 50/50

5. Wit

6. Sweet November

7. My Life Without Me

8. Erin Brockovitch

9. The Bucket List

10 Stepmom

What movies am I missing?

Cancer on TV

2012-01-07T14:03:00.000-08:00

If we know that one in 5 people has cancer and that cancer touches every family, and that most Americans watch more than 20 hours of TV a week--how come we don't see much cancer on TV?

Doesn't it seem that there should be cancer references and cancer experiences represented on regular TV? Yes, we have the fabulous ShowTime "The Big C" with Laura Linney but what about cancer in Modern Family and South Park and How I Met Your Mother and The Family Guy?

At any moment each of us knows someone with cancer--family member, extended family member, co-worker, in a friend's family etc. Someone has a diagnosis or is going thru treatment. Someone is dying or surviving. So where is that in our TV lives? Shouldn't there at least be a minor character with cancer? a mention of taking a casserole (yes, lasagna) to someone's home? Someone bald or in a chemo-scarf?

Cancer is in our lives, so how about our TV lives?

The Patient's Checklist

2012-01-06T10:23:00.000-08:00

This week I read a review copy of a new and very handy book called, "The Patient's Checklist". While ostensibly a book for patients to take with them to the hospital--this is actually a great book for family caregivers and advocates. Elizabeth Baily had the experience of managing her fathers care--some complicated care--and this book grew from her experience.

It is, in fact, filled with checklists to use before going to the hospital and at the hospital and after. Lots of methods for keeping track of who's who and what's what and what comes next.

This is a book that everyone over 50 should have as they care for their parents and siblings and to pass on to their kids who in turn will be taking care of them.

Hooray the Holidays are Over

2012-01-01T10:36:00.000-08:00

Countdown to our annual "Hooray the Holidays are Over!" party. Guests in one hour. I love this party because we only invite people we like--no "have to" guests. And we make foods we like and people bring unexpected treats...no booze unless it goes home with the bringer--so a really nice time. But this hour before I am always nervous--the start of a party feels stressful--that pause before it really clicks and people talk to each other.

Each year we get better at doing this party--easier with each other, easier with expectations, easier with what happens. My favorite part is seeing strangers meet or discovering that they have or want a connection with each other.

A new year to be in love, wickedly sexy, full of health and at peace with God.

Alas...a Writer

2011-12-30T05:28:00.000-08:00

"When a writer is born into a family the family is finished."

--Czeslaw Milosz

Kids and Christmas and Thanks

2011-12-26T19:23:00.000-08:00

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.

Oh Christmas Tree

2011-12-21T16:38:00.001-08:00

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!

Bonnie Prudden

2011-12-19T05:00:00.001-08:00

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 11^th at age 97. Her New York Times obituary says she was still exercising every day.

Looking for Signs

2011-12-17T12:10:00.000-08:00

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.

Ways to Go

2011-12-14T05:31:00.000-08:00

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.

Cancer in Comics

2011-12-11T06:31:00.000-08:00

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.

Helping Hands for the Holidays

2011-12-08T16:36:00.000-08:00

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.

Living with Uncertainty

2011-12-06T17:33:00.000-08:00

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.

The Bridge of San Luis Rey

2011-12-04T14:33:00.000-08:00

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.”

Close to the Bone

2011-12-02T14:27:00.001-08:00

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.

Volunteer Caregivers

2011-11-27T13:30:00.000-08:00

I’m getting ready to give a talk to a group of people who are volunteer caregivers. The organization is CareLinks and they serve Clifton Park and Saratoga County in upstate New York. The volunteers help their sick or older neighbors by giving rides, cooking, shopping and doing errands. The simple, basic, almost invisible stuff of daily life that can bring a family caregiver to their knees when they can’t do it.

I spent so many years caring for ill and dying family members that I know the gift of a friend who will grocery shop or drive to a doctor’s appointment or the one that saved my butt years ago when I was caring for two sick brothers: pick up my dry cleaning. Yes, it was that simple and singular but it saved my sanity—and probably my job.

There are now many organizations across the county that recruit, train and assign volunteer caregivers. Many come under the umbrella of “Faith in Action” groups. They are not necessarily people who are active church goers or parts of a traditional faith community but they live faith in humanity and they demonstrate their faith by giving back. In our Greater Capital Region in New York, CareLinks and Community Caregivers are two organizations that do a fabulous job of making the caregiving experience a great one for the volunteer and the family on the receiving end.

Service is gratitude in action. I am so grateful.

Cancer is so 19th Century

2011-11-22T09:46:00.000-08:00

Read today's New York Times article by science writer Gina Kolata about why the word "cancer" may be on its way out:

http://www.nytimes.com/2011/11/22/health/cancer-by-any-other-name-would-not-be-as-terrifying.html

Standing By

2011-11-20T17:04:00.001-08:00

I have a cold that I can’t shake. Everyone I know has or had this cold and all my hand washing, zinc lozenges and vitamin C did not save me. But I’ve been fighting this like crazy because today I was giving a talk on my book about military mental illness and I really, really wanted to give that talk. I love talking about the men—the China Marines—that I interviewed for this book and their stories of survival. But this dam cold and constant cough--I knew I was in danger of my voice simply disappearing mid-sentence.

So I prayed--for God’s will and acceptance--and to get my ego out of the way. What mattered was that the stories got told and that the China Marines –Donald, Frenchy, Gene and Bones--lives got witnessed. Then it hit me. I could ask John to go with me, and he said yes. He would read if I couldn’t.

I loaded the podium with hot water, throat spray and cough drops and I explained to the audience that my husband might step in to read if my voice disappeared. John was standing by.

I read for the whole 55 minutes. I told the stories of men who served and survived and thrived—men who were my teachers. And after I finished reading I opened my mouth to say “thank you” and my voice was gone. It was a gift to be able to give the talk and John was beside me to take over.

Powerless

2011-11-17T17:05:00.000-08:00

Today I attended an Alanon meeting. Alanon is the 12 step program for family members or friends of someone with an addiction. Today I realized that Alanon is also a great resource for cancer caregivers. (And don’t we all qualify for Alanon? Do you know anyone who doesn’t have a relative or friend with addiction or recovery in their story?)

The ideas discussed in an Alanon meeting are all things we struggle with as caregivers: We are powerless; we struggle to admit our powerlessness; we try to find the right Higher Power; we have to stop making cancer or the oncologist or the loved one with cancer into our Higher Power; we need prayer and meditation; we have to stop giving advice --and the thing that is key and so, so hard to practice: We have to learn self-care and to keep the focus on our selves.

Yeah, I know, “Keep the focus on yourself”. Seems crazy but it’s true. People in Alanon know about this: at the very time it seems impossible to stop focusing on the other person is exactly when you have to shift gears and go to self-care.

And no one can do that alone. That’s why we have caregiver support groups and phone lines for cancer caregivers and places like The Hope Club and Alanon. We need each other. I need the wisdom you have today, and I’ll loan you mine tomorrow.

Take a look at the Twelve Steps. They work for cancer and caregivers too.

Where is God in Cancer?

2011-11-15T04:15:00.001-08:00

This has been on my mind this week. How do you find God in cancer? Yes, we die and cancer is one of the mechanisms, but living in between the diagnosis and the death there are a lot of choices. It seems that there is a continuum with “offer it up” and long-suffering on one end and “there is a no God and fatalism (and a different kind of suffering maybe) on the other end. But maybe there is a surrender --with action --in the middle. That would not look the same for two patients or two caregivers.

Where, for each of us, is how we treat cancer, accept treatment, refuse treatments, or fight it? If God’s will is what is then is fighting cancer fighting God’s will? How do we practice acceptance when it means accepting cancer and death?

Zumba!

2011-11-13T12:34:00.001-08:00

I am tired but energized by lots of exercise today. I went to a Pilates class and then on to a Zumba dance fundraiser. I had a small fantasy of dancing for hours but no. One hour of Zumba was plenty. But the nice thing about Zumba is the laughter—no mirrors, no perfectionism, no right and wrong just “keep moving”. It is a sexy exercise—Latin and African music, lots of hips swaying. Women of every size and shape which also inspires.

While I danced John watched football and did the grocery shopping. Yea! Now I’m working on a talk for caregivers coming up in December—can I bring that feeling of energy and acceptance I get at Zumba to cancer caregivers?

Tonight we have Veal Dorato and Graeters ice cream. It may undo the benefits of Zumba but it’s also time for pleasure—of all kinds.

My Turn to Worry?

2011-11-11T07:37:00.001-08:00

Even as I write this I think, “Do you really need this to be about you?” But I flunked my blood tests. Again. Twice in one year. Well, not flunked exactly, but a C-minus. Not enough white blood cells. It’s called neutropenia. I Googled like crazy and sad to say, it’s a kind of boring disease. They use the word idiopathic a lot which basically means “Who the fuck knows”.

It’s not like leukemia—I went there first. I mean I came of age with Ali McGraw and “Love Story”, so every girl in her fifties remembers the dream to die so beautifully and with the perfect camel coat. No, leukemia is too many white blood cells. I have too few. It’s like low self-esteem of the blood cells. Figures.

Last year when my tests came back like this I was sentenced to six weeks of blood tests at the hematology center and the doc said, “Yep, you have low white blood cells.” So I’m not overly impressed.

But way, way in the back of my head is a little voice that whispers, “This is how it starts.”

Stranger Than Fiction

2011-11-05T13:16:00.000-07:00

Last night was a great Friday night at home. I stirred up Cajun steak tips and sweet potato fries. Almond Joy ice cream for dessert. And then we watched my all-time favorite movie: “Stranger Than Fiction”. I love, love, love this movie. I watch it at least twice a year and it’s new every time.

“Stranger than Fiction” has the most amazing cast: Emma Thompson, Will Ferrell, Maggie Gyllenhaal, Queen Latifah and Dustin Hoffman and it’s about everything: literature and art, careers and creativity, and especially about death and love and taxes. It has one of the funniest pictures of a stuck writer I have ever seen and one of the greatest, most poignant love stories. And it’s about death. Facing death, accepting death. (That’s why I need to talk about it here.)

This movie makes me believe in art, in love, in courage, and in the sweet strangeness of human beings. And in cookies.

Guys: this movie sets the bar for how a man can win a woman’s heart with a gift. And ladies: Maggie Gyllenhaal’s handbag --and her arms, oh, her arms. Makes you want to do pushups over and over and over.

Stranger Than Fiction. It’s on Netflix.

The Big--Happy--O!

2011-11-03T17:56:00.000-07:00

Ok, here is one wild sex fact. (And more evidence for why we should be talking about sex in CancerLand.) Today I read an article about women and orgasms in the November/December issue of “Healthy Life” magazine. I read this: “Gordon Gallup, Jr., a psychology professor at SUNY Albany found that Prostaglandin, a hormone present in semen, is a natural antidepressant.”

It continues, “In a 2002 study of nearly 300 women, Gallup found that those who frequently had sex without condoms had significantly fewer symptoms of depression than those who were not regularly exposed to semen.”

Wow. Imagine the pick-up lines. “I just want to make you happy, baby.” And do you like that careful wording, “exposed to semen”. Prozac, Paxil or BJ?

Day of the Dead

2011-11-01T04:15:00.000-07:00

Today I celebrate Dia de los Muertos, or Day of the Dead. It’s not a holiday I grew up with but one I’ve borrowed from the Southwest and Mexico. It’s become one of my favorite holidays partly because it’s a good spiritual counterpart to Halloween. Except for the candy, October 31st doesn’t leave much for grownups. Being scared of goblins and ghoulies lost its sway when I got old enough to lose people that I loved. The dead just aren’t scary in the same way anymore. In fact, I’d welcome a visit from some of them.

That’s what Day of the Dead is about. There is a belief that on this day the veil separating this world and the next is thinner and so it’s a time we can be closer to those that we love who are dead.

Day of the Dead celebration centers on rituals for remembering loved ones. We can visit in our imagination or feel their presence. It can mean prayer or conversation, writing a letter or looking at old photos. The tradition that I use includes making an ofrenda, or altar, something as simple as putting photos and candles on the coffee table and taking time to talk and remember. We also have chocolate as a symbol of the sweet and bitter separation from those we love.

A ritual is a way of ordering life. Whether Purim or Advent, hearing Mass or saying Kaddish, small ceremonies help us sort and reframe our memories. When someone dies the relationship doesn’t stop, it’s renegotiated, literally re-conceived.

This isn’t a very American idea. Culturally our preferences are for efficiency and effectiveness; even with grief we use words like closure and process.

I remember my frustration when I was grieving and well-intentioned friends would suggest I move along in my process and quoted Elizabeth Kubler-Ross. The simplified version of her theory lists stages: Denial--Bargaining--Anger--Depression, and Acceptance. But it’s false to create an expectation of five discrete steps. This listing implies order and that a person can move from point A to point B and be done. That makes grief seem like an emotional Monopoly game where you go around the board, collect points and get to a distinct and certain end. This false notion of linearity is apparent when we hear people judge someone who is grieving, “Oh she missed the anger stage”, or “He hasn’t reached acceptance yet.”

I always thought that “losing a loved one” was a euphemism used by people who were afraid to say the word dead.. But after losing my brothers I know that lost is the perfect word to describe the feeling that follows a death. Something just out of reach, still here, but also gone.

Though they died several years ago my feeling about my brothers is that I have misplaced them; It’s that sensation of knowing that my book or that letter I was just reading, are around here somewhere…if I could just remember where I left him.

I think this is why we can sometimes be so hard on the grieving, and why we want them to go through those stages and be done with it. We love closure and things that are sealed and settled. But death and grief, for all their seeming finality, are not as final as we would like.

So tonight I’ll make cocoa and light candles; we’ll look at pictures and tell stories and we’ll laugh.

The root of the word grieve is heavy. We carry our dead as a cherished burden. Death ends a life but not a relationship. Who would want to close the door on that?

Trick or Treat

2011-10-31T18:13:00.001-07:00

John was being grumpy about the kids coming to the door. “Stupid Holiday, stupid” every time the door bell rang. . Grumble grumble…so I went into the bedroom, changed into black lace stockings and put on my trench coat.…I went out the door and said over my shoulder, “If any kids come please answer the door and give them the candy.” Grumble grumble… then I went outside counted to ten and came back and rang the bell and when John opened the door I yelled “Trick or Treat” and flashed him.

A new attitude!

Caught in the Middle

2011-10-31T05:24:00.000-07:00

76 million of us Baby Boomers. That means a lot of sandwich generation caregivers. We are taking care of parents, sometimes grandparents, children, grandchildren, step children and spouses. We live longer but the fine print that accompanies that good news says that we live longer with more illness and more—multiple—disabilities. (Of course we; do you can’t live longer without stuff happening to your body.)

So where is the good good news? It’s this: There are a lot of us and so we have colleagues and peers and can have companions if we seek them out. Our friends are caregivers too and we can support each other and trade information. We can take turns driving, shopping and listening. We can volunteer. We can commiserate.

We can’t change life and we can’t change death but we can help each other.

Oh God!

2011-10-29T14:00:00.001-07:00

The downside to being an atheist is that you have no one to cry out to in the throes of an orgasm.

Obituaries

2011-10-25T18:28:00.001-07:00

I read obituaries every day. I have since I was in my twenties. I think of them as little stories, very, very short novels or Haiku lives. But recently I’ve been keeping score of how many of the regional dead are in their late 50’s or early 60’s—our ages—me and John.

I think again—“People my age and John’s age die every day.” And they are not extraordinary deaths, just regular ones from illness and disease and cancers.

I try to use this in a positive way. To remind myself to live my life—mine and not someone else’s idea of my life. To choose my day and –maybe I can’t completely choose what’s in that day --but to choose my attitude about that stuff. To include more of what does matter to me in this day and less of what doesn’t.

I don’t want to die on the day that I was obsessed with who didn’t like me or on the day that I kept trying to please someone else.

Loves Long Walks on the Beach

2011-10-24T16:14:00.000-07:00

This weekend felt like a good Hallmark card or a bad Match.com posting. A beautiful fall weekend on Cape Cod. On the drive there we laughed listening to Tina Fey “Bossypants”. Ate steamers and fried clams and blueberry pie. John did chores. I hit the jackpot at TJ Max. And we had long, long walks on the beach. Holding hands. Laughing. We saw a friend’s new house. Went to the movies. Felt so grateful for our lives. This is one of those times when it feels like the clouds parted. I feel grateful for every struggle and every minute of therapy that got us here. Not that I want to relive any of it. No, but I do love long walks on the beach

My Dead Friends by Marie Howe

2011-10-21T08:51:00.000-07:00

I have begun,
when I'm weary and can't decide an answer to a bewildering question
to ask my dead friends for their opinion
and the answer is often immediate and clear.
Should I take the job? Move to the city? Should I try to conceive a child
in my middle age?
They stand in unison shaking their heads and smiling-whatever leads
to joy, they always answer,
to more life and less worry. I look into the vase where Billy's ashes were-
it's green in there, a green vase,
and I ask Billy if I should return the difficult phone call, and he says, yes.
Billy's already gone through the frightening door,
whatever he says I'll do.

-- by Marie Howe

Vagina

2011-10-17T17:16:00.000-07:00

Words—it’s all about words. Language is what creates our reality, and language is what allows us to think. Think about that. If you have language, you have power and in CancerLand we need all the power we can get.

Words really do matter. That’s what got me started on this journey of writing about sex and intimacy and cancer. I had to write out my frustration because of all the words no one would use with me and John, and because of the words they did use that made me crazy.

But it’s not just in CancerLand. Our culture is inhibited about sexual language and even anatomical language. Now, I know that most women over 30 think they have that nailed. We do not talk like our mothers or our grandmothers. We have come to a place where we believe that we are so open and forthright; we don’t say “down there” or “pee pee” to refer to our genitals but we have raised a huge group of young girls who think their whole genital area is a vagina.

No! That is not your vagina or your Vajayjay—sorry Oprah. Most of the time we are mislabeling the mons, vulva, labia and clitoris, with the equally euphemistic vagina.

And that is a problem in CancerLand and in women’s lives. To think we need words and to have intimacy we have to have words. So what are we gonna do about our words?

The Pig in the Python

2011-10-13T17:02:00.000-07:00

We, the “Baby Boomers”, were born between 1946 and 1964. Nice numerical bookends to remember who we are. I was born in 1953 so I’m nicely embedded in the center of this large, unruly, and predictable but independent demographic group. We are—according to demographers-- the “Pig in the Python”—so named because they can watch us move along the lifespan and longevity track.

Yes, we know there are so many of us and we know the benefits. Wish for a more comfortable shoe for your middle-aged feet? Ten new brands. Want a vacation geared to an aging but not willing to admit it body? Thousands to choose from.

But here’s a fun fact to pause and think about: Our big group is aging together and we are getting—and going to get—disabled together, and we are going to have more and more and more cancer together. This is the consequence of our “Boomer Bump” combined with better healthcare. The longer you live the more cancer, and more likelihood of cancer, you’ll have.

So we all have a very selfish and very altruistic reason to care about cancer. If you too were born between 1946 and 1964 cancer is coming soon to a body near you.

Steve Jobs: How to live before you die | Video on TED.com

2011-10-09T16:55:00.000-07:00

Tonight I watched this video of Steve Jobs at Stanford and loving hearing him talk about doing what you love and embracing death every day. That is a great way to love in the time of cancer. Click on the link below to see and hear this 12 minute talk:

Steve Jobs: How to live before you die | Video on TED.com

Steve Jobs

2011-10-06T16:54:00.000-07:00

I am sad about Steve Jobs. He died yesterday from pancreatic cancer and its treatment. I didn’t know him—my only connection is an I Phone and a laptop. But he was 56 and smart and talented and fierce.

Maybe too, his death is a reminder—again—that we die. And that no amount of money, access, power or even the best healthcare in the world can beat death. We die.

I’m also saying to myself, “Oh Diane, get this, please get this, people my age and John’s age die every day--and death at our age is not extraordinary, so really, does work or money or who doesn’t like me really matter?”

I know that the answer is “no”. But living it—that’s another matter.

Kegels

2011-10-04T16:31:00.000-07:00

Kegels are on the list of things we don’t talk about with our friends. But we should. We really should. If sex isn’t satisfying it is mostly because it’s not pleasurable. And it’s not pleasurable because we’re not having orgasms or not having them often enough or with the intensity to send those endorphins loose.

Strengthening your pelvic floor muscles makes the difference.

I wish that someone had told me about Kegels 20 years ago. So I am telling you. You can click on the link below to the Mayo Clinic website for an explanation and discussion.

There should be public service announcements about Kegels. Book groups should talk about Kegels. Weight Watchers should have handouts on Kegels: Want to eat less? Have more orgasms—do your Kegels!

http://www.mayoclinic.com/health/kegel-exercises/WO00119

Volunteer Opportunities with the American Cancer Society Hope Club

2011-10-02T14:12:00.000-07:00

I saw the staff team from The American Cancer Society Hope Club today and learned about their volunteer opportunities. I’ve done some of these activities as a volunteer in the past and I know how satisfying and manageable they are--and how appreciated. Check it out:

Drivers for Road to Recovery: give someone a ride to treatment—round trip or one way. Surprisingly easy to do—even if you are working or have kids.

Coordinator for Road to Recovery Drivers: You will be blown away by the people you meet and talk about having gratitude in your day! Yes!

Patient Navigation: If you have been through CancerLand you can help someone else. Share the wisdom; translate the jargon; teach a caregiver how to cope; turn victim into advocate. You already know so much.

For more information call The ACS Hope Club at 518-782-9833

Strawberries and Plums

2011-10-01T16:19:00.000-07:00

At the funeral on Wednesday the priest shared this Buddhist parable:

A man walking across a field encounters a tiger. The man runs and the tiger chases him. Coming to a cliff, the man caught hold of a wild vine and swung himself over the edge. The tiger sniffed at him from above. Terrified, the man looked down to where, far below, another tiger had come, waiting to eat him. Then two mice, one white and one black, little by little began to gnaw away at the vine. Realizing his situation the man looks around and sees nearby a luscious strawberry. Grasping the vine in one hand, he plucked the strawberry with the other, and popped it in his mouth. How sweet it tasted!

We are that man. Lots of tigers. Lots of mice. And if we look around, lots of ripe strawberries.

This reminder to taste the fruit of life brought to mind the poem, “This is Just to Say” by
William Carlos Williams:

I have eaten
the plums
that were in
the icebox
and which
you were probably
saving
for breakfast
Forgive me
they were delicious
so sweet
and so cold.

Depression

2011-09-28T15:18:00.000-07:00

A colleague has committed suicide. A man who is smart, accomplished, creative, spiritual. A good husband and great dad, active in his faith community, gracious, kind.

The grief radiates into circle after circle in our community.

He died of depression. It makes me furious and sad.

Depression is an illness. Where is the walk, the gala and the gray ribbon? Where is the Race to a Cure?

Skip the Second Drink

2011-09-26T16:45:00.000-07:00

News about alcohol and cancer: one in 10 cancers for men and one in 33 cancers for women can be tied to alcohol consumption. The link below takes you to the recent European study that is getting attention for this correlation. The study details the amounts over the "recomended daily limit" that put us at risk.

The specific issue is that alcohol turns to acetaldehyde, a compound that damages DNA, thus increasing risk of cancer.

So what's a girl to do? Other studies tell us that red wine is good for the heart. The issue is amount and frequency. Yes, the golden mean: moderation.

Alcohol Boosts Risk Of Cancer

Don't Worry Die Sooner

2011-09-24T12:21:00.000-07:00

In my class on pastoral care for people who are dying I’ve been reading about “The Myths of a Long Life” and here was a surprise:

Worriers live longer.

Here’s why: Worriers tend to be conscientious, prudent and detail oriented. That means they wear their seat belts, drink less, don’t drink and drive, don’t misuse their prescription medicines, they don’t speed, they get physicals and routine health screenings, wear helmets when biking and they follow their doctor’s orders.

Optimism has a downside. “No worries” people are more likely to overlook symptoms and to not follow the doctor’s orders.

So do worry; be healthy.

When He Dies

2011-09-21T04:57:00.000-07:00

This morning I was out walking very early. At that hour my mind drifts all over the place and I was imagining John’s funeral. It was prompted, I think, by the music on my IPod, a thought about the music choices I’d make and what the actual event might be like.

Then the fear hit me; I knew how sad I’d be and how scared I’d be and how hard it would be to walk out of the church when John has died. But then my drifting mind reassured me. “Oh,” I thought, “But John will hold my arm, he’ll walk out of the church with me; I’ll lean on him”. And then the terrible reality hit me: When I am at John’s funeral he won’t be able to help me.

On that day I most fear—the day I’ll need him most—he won’t and can’t be next to me.

There is Even a Diet for It

2011-09-19T17:09:00.000-07:00

I knew that Kegels were crucial to having orgasms and to “improving” them—and I’m all about self-improvement—but I didn’t know that there is more you can do. Turns out there is even a diet.

Yep, “The Orgasm Diet” by Marenna Lindberg. It’s a pretty serious book about the biochemistry of sexual response and how food and diet—and Kegels—can improve things. You can get this from most library systems or if you don’t want to make eye contact with the check out lady at your library, buy it used on Amazon.

High on the “Should” list in The Orgasm Diet: Omega 3’s (you know they are good for everything), Calcium and Magnesium, Extra Vitamin C, and one ounce of high quality dark chocolate very day.

And on the “Don’t” list: saturated fat (duh), caffeine (oh, no!) and soy products (surprise). Turns out that soy disrupts hormonal responses—that’s why many women take it during menopause—but it can also disrupt the orgasmic response too. You don’t have to eliminate all soy but you don’t want a soy-a-day diet if you also want the O-response.

There is also a ton of good, practical information in this book about how women’s bodies work and how sexual arousal works and a specific and practical plan for incorporating Kegels into your life.

Lessons from HOPE 2011

2011-09-16T05:27:00.001-07:00

Many thanks to Sabrina Mosseau, RN at Samaritan Hospital Cancer Center for creating and hosting last night’s HOPE 2011 party, dinner and education event. The theme was “Difficult Conversations” and they were conversations about: Fear of Mammogram and Colonoscopy; Fear about Money and Fear and Silence around Sex.

Many thanks too to Hilton Garden Inn in Troy for a fabulous venue and amazing dinner—proving that healthy food can indeed be gourmet and delicious.

I was one of the speakers but, as always, I did the learning from women in the audience. I learned that—for sure—there is not enough talk about sex in Cancer Land. And not just about their own cancers—many breast cancer survivors were in attendance --but the other cancers women experience, and their husband’s cancers. One woman told me that her husband’s doctor said to him, one hand on the door knob, “Wear a condom,” but didn’t say when, for how long or under what circumstances. That’s so crazy.

I learned that most of us want to hear more about sex—related to cancer and just related to our lives and we want a safe, comfortable setting to learn in. Most of us don’t talk to our friends about our—and their—sex lives—so we miss so much information –and we miss comfort.

I also learned that there are other women who want to kick back against the pastel, fragile, powerless image of women with cancer and who will meet cancer’s fierceness with their own.

And I learned—and loved this—that you can buy lymphedema “garments” –important after breast cancer surgery—that look like tattoos and groovy, chic tee shirt sleeves.

Amy Winehouse would certainly approve!

For more information and tons of resources contact: Sabrina Mosseau, RN, OCN at mosseaus@nehealth.com

The Silence Around Sex, Money, Breasts and Tests

2011-09-13T17:55:00.000-07:00

For women in the New York Capital Region area—please mark your calendar for this evening/dinner event: provocative conversation, humor, gourmet healthy dinner and Miche handbags!

H.O.P.E. 2011: Honoring Female Cancer Survivors:

Opening Up Communication * Providing Education * Empowering Lives

Date: Thursday September 15th, 2011
Location: Hilton Garden Inn 235 Hoosick Street Troy, New York
Healthy Gourmet Supper
and Presentations: “Difficult Conversations”

The Fear of Mammography and Colon Screening
Sabrina Mosseau BS,RN,OCN – Administrative Director Medical Oncology and Women’s Health; Samaritan Hospital Cancer Treatment Center

The Silence about Sex and Intimacy
Diane Cameron Pascone – Director of Development - Unity House Troy

The Importance of Money Strategies for Women
Christopher Nuss MBA, ChFC, CLU,CLTC – Wealth Management Advisor – Northwestern Mutual Financial Network

Time: Registration @ 5:30pm Dinner and Presentations @ 6pm
There is a $15.00 fee to attend this program. This will be collected at the door.

Registration required : Call Sabrina Mosseau @ 518-271-3324 or mosseaus@nehealth.com

Even the Dead Weep

2011-09-10T13:05:00.000-07:00

Even the dead weep at a time like this.

All those on the other side, making preparations to welcome such a large group.

Death is going door to door in New York City
walking past doormen,

going up dark stairways, down halls,
taking the train to Long Island and Connecticut
and getting off at little Cheeveresque stations in the suburbs.

Death nears exhaustion, leaning in one more doorway, waiting for the buzzer to be answered,

hesitating, sighing, tired.

She has tears in her eyes as she visits another house,

and another and another.

At night death goes down to the site and sits on the rubble wishing it wasn’t true.

Some of the dogs come and sniff at death, then back up and give her a funny look.

Even death is too tired to be moved.

September 12, 2001

What Friends Don't Tell Each Other

2011-09-06T07:55:00.000-07:00

Part of why it takes so long to learn how to make sex good is that we don’t talk about it enough. Now that may seem crazy if you think about the number of times sex is mentioned in movies, magazines and on TV. But really talk about it? Not so much.

Think about your closest gal pals and what you know about them and what they know about you. We’re told how hard it is to talk about money. Do you know how much your friends make? If they have family money? The amount of debt they have?

And what about your friend’s spiritual life: Do they believe in God? Do you know who prays and when and how?

Money and God is a lot of intimate info to know about a person. And then there is sex.

Now the odd thing is that you may know about some really personal stuff about your closest friends. You know about the difficult childhood and the deep wounds carried from parents or siblings. You may know about family illnesses: mental illness and addiction and alcoholism. You talk about the secret shames of the workplace, the tensions in marriages, the pain from breakups. You may even know about the secret surgeries---the eye job her husband doesn’t even know she had on your “girl’s weekend”. But do you know if she does Kegels?

Yeah Kegels. How could a close friend not talk to her closest women friends about Kegels? Do you do yours? Does she do hers? Have you talked about how much better sex is with a regular Kegels routine?

And masturbation. We believe that we are free, open minded and liberal but have you ever told a woman friend that you had a great time—alone—after a stressful week at work? Do you know if she prefers erotica and what kinds?

Imagine your best friend in the world and the parts of her life you don’t know about. And start talking. Everyone will be happier.

What I Didn't Know

2011-09-04T15:33:00.000-07:00

When I was 25 I knew so little about sex. When I was 30 I thought I knew some things but I still knew so little. At 35 I was learning how to give pleasure, but it took ten more years to begin to learn how to receive it.

I knew that “older” people had sex. When I was 30 my mother who had been widowed many years, was, at age 70, in a new marriage. She told me that she and Donald had sex almost every day. I thought “good for her”. But I also thought, “How good could it really be?”

Now I know. And I’m sorry I laughed when people said that sex gets better as you age. I didn’t know. Now I do.

At 58 sex is better than I ever imagined. Yes, I wish my skin was smoother and I wish my skin didn’t sag—especially at certain angles. Confidence is part of it. And learning what works. And being fearless about trying things, and trying them again.

Many years ago I read Helen Gurley Brown’s book about women and middle age. She wrote that a woman over 50 has to decide that she wants an orgasm and then go for it. I didn’t, exactly, know what she meant.

Now I do.

Cancer has a Sweet Tooth

2011-09-02T05:48:00.000-07:00

I’m reading the new book, “Sugar Nation” by Jeff O’Connell and it’s an eye opener. I’m generally pretty healthy and mindful of eating well except for this little issue of sugar! I love candy—the chewy stuff: licorice, gummy bears, fruit slices. I have rationalized that candy like that is low fat and relatively low calories so I chew away. Except that it’s been nagging at me.

Jeff’s book is about the consequences: insulin resistance, Diabetes Type2 etc. Now those conditions are scary enough: Heart disease, blindness, neuropathy and amputation. Yeah, that last word gets your attention right?

But then this: cancer has a sweet tooth.

Jeff writes, “Recent research shows that the consumption of high amounts of sugar and refined grains boost the odds for cancers of the esophagus, kidneys and pancreas.” And this, “Excessive insulin, produced internally in response to high glucose can raise your risk of being diagnosed with a number of cancers including colon, breast and liver.”

And the surprise: “The link between obesity and cancer may not reflect obesity itself so much as insulin levels being high.”

Later in the book Jeff describes the incidence of “metabolically obese thin people.” People who are fit of body and often healthy looking but internally have the same metabolic responses as someone quite obese.

Another statistic is the cincher: “Government statistics say that Diabetes Type 2 is the seventh leading cause of death in the United States. But that ranking is an illusion. Type 2 diabetes covers its tracks by ending a life some other way—a stroke, heart attack, toxic shock.”

Or cancer.

Hope 2011 An Evening for Women Cancer Survivors--and Their Friends.

2011-08-30T16:53:00.000-07:00

For women in the New York Capital Region area—please mark your calendar for this evening/dinner event: provocative conversation, humor, gourmet healthy dinner and Miche handbags!

Join us for: H.O.P.E. 2011: Honoring Female Cancer Survivors:
Opening Up Communication * Providing Education * Empowering Lives

Date: Thursday September 15th, 2011

Location: Hilton Garden Inn 235 Hoosick Street Troy, New York

A Healthy Gourmet Supper with Presentations: “Difficult Conversations”

The Fear of Mammography and Colon Screening
Sabrina Mosseau BS,RN,OCN – Administrative Director Medical Oncology and Women’s Health; Samaritan Hospital Cancer Treatment Center

The Silence about Sex and Intimacy
Diane Cameron Pascone – Director of Development - Unity House Troy, Contributing writer to the Times Union

The Importance of Money Strategies for Women
Christopher Nuss MBA, ChFC, CLU,CLTC – Wealth Management Advisor – Northwestern Mutual Financial Network

Time: Registration @ 5:30pm Dinner and Presentations @ 6pm

There is a $15.00 fee to attend this program. This will be collected at the door.

Registration required by September 9th to Sabrina Mosseau @ 518-271-3324 or mosseaus@nehealth.com

Patience Humor Computer

2011-08-25T16:52:00.001-07:00

I’ve been gone for days in New Computer Land. Not just new but also my first Mac. ( A MacBook Pro ). She’s so pretty and slim and graceful and making me crazy. I knew I had to be a beginner all over again and I knew I’d have to play, explore and experiment, but I forgot that it would also feel frustrating. A lot like being in a new relationship—minus the good sex.

I can instantly see my control issues, my insistence on having things my way and perfectionist? I want to know how to use it already. (I want to be loved now—today). But I don’t and can’t until I play, experiment and oh yeah, go to school.

So a new commitment to my newest relationship: to be gentle and kind and to laugh and to trust that Ms. Mac and I will bond.

CancerLand at Omega Institute

2011-08-20T10:00:00.000-07:00

Omega Institute in Rhinebeck, New York is one of my favorite places. Great workshops, great food, great people. I've had many wonderful expereinces there over many years. I'm a fan.

I just recieved this link to a cancer event/weekend at Omega with some amazing speakers/presenters including Mukherjee who wrote "The Emperor of All Maladies: A Biography of Cancer".

September in Upstate New York is beautiful so check this out:

http://www.eomega.org/omega/workshops/6effa2eaa63291e518493a4bbdfca934/?source=ePromo.OM.FM

Flashback Backlash

2011-08-18T15:52:00.000-07:00

That’s what it felt like last night.

After yesterday’s visit to the oncologist with John for a quarterly check-up a wave of grief, anger, hurt and fear hit me hard. No sleep last night just wide awake nightmares and scenarios of chemo-days and the loneliness of those two years flooding thru me.

Being at the chemo center was the trigger. It felt like a huge delayed reaction. Maybe it hits now because I am safe enough now and we are safe enough now and the cancer crisis is far enough away now so I can fully absorb how painful it was then. And it was so painful then.

Here’s what I understand: the body can only do so much and hold so much pain. Then it gets shoved way down. To spring up later. Kind of like caregiver PTSD. I made my pain worse in those two years of John’s diagnosis, surgery, chemo and post-chemo exhaustion and recovery from awful side effects. I didn’t want to admit the fear and the loneliness—especially the loneliness. I was afraid to say—back then—how hard it was because I was afraid that someone would think I wasn’t loving enough or a good enough girlfriend. I really believed that I needed to be that uncomplaining, sacrificing caregiver.

All the advice I give so freely now: use your support group; complain like mad; speak up; find two people who can hear all of your real feelings—I learned the hard way. Maybe that is why my passion for cancer caregiving is so strong.

But even two years later as we still live in Cancer Land I’m having to release so much pain.

Changing Demographics Changes Caregiving

2011-08-16T16:47:00.000-07:00

While much of what we talk about on this blog is related to cancer it’s important to know that cancer is no longer a “stand alone” illness or disability. There is no longer a sick spouse and a well spouse—even though a lot of the discussion around caregiving is framed in that false dichotomy. Because of the dramatic shifts in demographics and changes in healthcare it’s very unlikely that a family or a household will deal only with cancer.

Here are some statistics on aging, cancer and chronic illness in the New York Capital Region:

*By 2015 the number of people over 60 will increase by 40%

*By 2012 six out of 10 people over 60 will manage more than 1 chronic illness

*By 2020 cancer survivors will increase by 55%

*By 2021 the age group of people 85+ will increase by 35%

*By 2012 the number of formal caregivers (nurses, aides, case managers) will decrease by 20%

If you look at those statistics side-by-side you’ll see the dilemma we are facing: The good news: more of us will live longer. But the fine print that we forget to read says we’ll live longer with cancer and with multiple chronic conditions. It also means that our caregivers will also live longer but with much more complicated health issues of their own. What that good and bad news really means is that most of our households will have multiple caregivers –spouses and partners will trade roles most of the time or will be simultaneously caregivers for each other.

This is a consequence of better healthcare and of the rapid changes in cancer treatment.

You may be experiencing this. One member of your family may have cancer but someone else in the family has heart disease, diabetes, rheumatoid arthritis, dementia, MS, or another form of cancer. As we age better, and live longer, this will go back and forth multiple times.

Wedding Poem for our Anniversary

2011-08-15T07:11:00.000-07:00

Thank You, My Fate

Great humility fills me,
great purity fills me,
I make love with my dear
as if I made love dying
as if I made love praying,
tears pour
over my arms and his arms.
I don’t know whether this is joy
or sadness, I don’t understand
what I feel, I’m crying,
I’m crying, it’s humility
as if I were dead,
gratitude, I thank you, my fate,
I’m unworthy, how beautiful
my life.

— Anna Swir
Translated from the Polish by Czeslaw Milosz

Crazy Sexy Cancer Questions

2011-08-14T13:36:00.000-07:00

Is cancer really this much fun? This chic? Is Kris Carr this energized because she didn’t have chemo or surgery? Am I just being cranky? Or is this really a new way to do cancer now that more cancer is chronic and not a death sentence?

What do you think? Click on the link below to read about Upstate New Yorker Kris Carr and her Crazy Sexy Life.

http://www.nytimes.com/2011/08/14/magazine/kris-carr-crazy-sexy-entrepreneur.html

Ribbons for Caregivers?

2011-08-12T16:32:00.000-07:00

This week I participated in a great seminar on cancer and caregiving presented by the organization To Life! Tons of new information on genetic testing and hormone replacement therapies. Answers to the questions you didn’t even know that you wanted to ask. But it was –again—the conversations with caregivers that blew me away. How much life caregivers spend without even knowing how deeply they are committed or how much it might be affecting their life and health.

I always think that people must know the impact of caregiving and then each time I talk to a group it’s there again: caregivers are working fulltime, raising kids, caring for at least one elderly parent and a spouse or partner with cancer. And they are apologizing about some part of their life they are not doing well: missed a friend’s birthday; haven’t followed international news; missed a new movie. And the big thing they are skipping is attention to their own healthcare and that has disastrous effects for the caregiver and the family.

Caregivers skip annual physicals, mammograms, blood tests, dexascans, teeth cleaning, medication monitoring. Nobody wants to go to another doctor when you are actively caring for someone with cancer—you see far too many medical waiting rooms—with awful magazines and terrible TV—and so caregivers get sick.

We know that breast cancer is hard and colon cancer is hard and lung cancer is hard but caregiving is hard too and mostly it goes unacknowledged by medical professionals even though there are big medical consequences.

So, what color is the ribbon for caregivers? Should it be a rainbow because caregiving encompasses every serious illness? Or should the caregiver ribbon be clear plastic because caregiving and its consequences are still invisible?

A Free Workshop for Women Concerned with Cancer--- & Caregivers

2011-08-08T16:32:00.000-07:00

To Life! Presents... Beat the Odds
A Workshop with Breakfast and Presentations for Women Concerned with Cancer—Patients and Caregivers.

This Wednesday in Saratoga Springs, New York:

Wednesday, August 10, 2011 at the Gideon Putnam Resort

24 Gideon Putnam Rd, Saratoga Springs

Breakfast at 8:00 am Presentations to follow at 8:45 am

The Role of Genetics in Cancer Diagnosis & Treatment

Presented by Luba Djurdjinovic, Executive Director of the Ferre Institute

Hormone Therapy—What is Right for You?

Presented by Dr. Vinita Singh, Medical Oncologist at Samaritan Hospital Cancer Treatment Center

Caregivers: Perspectives on Caring for Your Loved One

Presented by Diane Cameron Pascone, Times Union columnist and teacher of caregiving courses

To register call To Life! at (518) 439-5975 x22, or e-mail lglavin@tolife.org.

Cancer Is Not Your Only Job

2011-08-05T04:43:00.000-07:00

Here is a great resource when cancer is not your only job. Many of us are managing cancer and work--fulltime, parttime, all the time. CancerandCareers.org has advice on the law, practicalities around workplace communication, talking about your cancer during a job search and lots of guidnace on how to keep and manage your job--and your career--with cancer.

Lots here for cancer caregivers too.

Click below and bookmark this site in your favorites.

http://www.cancerandcareers.org/en?utm_source=google&utm_medium=cpc&utm_term=cancerandcareers.org&utm_content=Cancer+and+Careers+Org.&utm_campaign=CAC_Branded_GRANTS+Account

The Big C

2011-08-02T17:07:00.000-07:00

We are watching the first season of the TV series “The Big C” starring Laura Linney. (Last seen as a family caregiver in “The Savages” with Philip Seymour Hoffman”). The Big C is wonderful, witty and thought provoking. And it hits every stereotype about cancer: the smarmy platitudes, the saccharine support group, the “cancer is a gift” message and the “your anger caused your cancer” craziness. Linney just explores and pushes back in the most wholly human and imperfect ways.

The premise of the show is great: What would you do if you were diagnosed with a late stage cancer and you knew and your doctor knew but there was some delay—weeks? months?--before anyone else knew. In that cocoon of time and spiritual space who would you become? What would that secret knowledge let you try out before the expectations of “cancer patient” surround you?

Evening Gatha

2011-07-29T04:44:00.000-07:00

In Zen Buddhism a gatha is a song or hymn that is chanted as part of one’s practice. This evening gatha was a gift from a friend. It hangs in my bathroom.

Evening Gatha:

Let me respectfully remind you~
Life and death are of supreme importance~
Time swiftly passes by, and opportunity is lost~
Each of us should strive to awaken…..
.....awaken
Take heed. Do not squander your life.

Workshop for Women Cancer Patients and Caregivers August 10th

2011-07-23T11:32:00.000-07:00

To Life! Presents... Beat the Odds

A FREE Workshop with Breakfast and Presentations for Cancer Patients and Caregivers.

Date: Wednesday, August 10, 2011

Location: Gideon Putnam Resort
24 Gideon Putnam Rd, Saratoga Springs, New York

Time: Breakfast at 8:00 am Presentations to follow at 8:45 am

Tpoics and Panels:
The Role of Genetics in Cancer Diagnosis & Treatment
Presented by Luba Djurdjinovic, Executive Director of the Ferre Institute

Hormone Therapy—What is Right for You?
Presented by Dr. Vinita Singh, Medical Oncologist at Samaritan Hospital Cancer Treatment Center

Caregivers: Perspectives on Caring for Your Loved One
Presented by Diane Cameron Pascone, Times Union columnist and teacher of caregiving courses

Pre-registration is required by August 7, 2011.

To register call To Life! at (518) 439-5975 x22, or e-mail lglavin@tolife.org.

A Broken Toe

2011-07-21T08:33:00.000-07:00

It’s the little things not the big ones that test my humility and self-concept. I made it through cancer, caregiving and blended family craziness, but last night completely lost it over my little toe.

I broke my toe. I was rushing and turned quickly and tripped over John. (I’ll let my therapist sort out the deeper meaning of that.) I went down howling at the sharp pain but came up sobbing that “I don’t have time for this right now.”

You would think that I have had so many ways in the past few years to learn that life happens when you are making other plans, but my ego insists she will have her way. I’m laughing at myself, and I’m not. I see in this how hard it is to take care of myself, to accept life on life’s terms and to just be human.

Chicago

2011-07-20T05:05:00.001-07:00

I’m home now from Chicago. A wonderful vacation in a new city with an old friend. I met my friend Brigid in Chicago and we had art, culture, shopping, and endless talking about our lives. Brigid and I know each other 30 years but we haven’t lived in the same city for the last 15. Earlier this year it seemed that the friendship would break from the distance and changes in our lives. We were young, single women together in Baltimore and shared passions for art and food and self-improvement.

In Chicago we went to museums, the symphony in the park and walked Michigan Avenue until our feet burned. Then we went to the Nordstrom shoe department for relief. And we talked nonstop about how our inner lives had improved and the parts that still resisted change. We swapped names of therapists, gurus and self help books.

It also felt good to go away alone—to have all that quiet time in travel---the good news of long waits in airports is that it gives me a huge amount of quiet and solitude and that really feeds my writer/creator self. I was delighted to find that Chicago’s Midway Airport has a Chapel and Spiritual Center in the airport. I went there to pray and meditate and be still.

Do Not Disturb

2011-07-12T16:22:00.000-07:00

On my office door I have one of those hanging cards from a hotel that you attach to the doorknob to advise the housekeeping staff of your wishes. This one, from a hotel in Toronto, says “Do Not Disturb” on one side. On the flip side of the card is the same phrase in French—“Ne pas deranger”. But, as my husband pointed out, the literal translation of this phrase in French is, “Do Not Derange”. I love that. It’s fair warning to anyone in my life.

Sleeping with Bread

2011-07-10T06:43:00.001-07:00

A favorite book of mine is called, “Sleeping with Bread” by Dennis, Sheila and Matt Linn. It’s about a simple discernment process that the Linns teach—helping us to see what matters and what brings us joy.

My favorite part of this book is the story that gives the book its title. This is the story:

“During the bombing raids of World War II thousands of children were orphaned and left to starve. The fortunate ones were rescued and placed in refugee camps where they received food and good care. But many of these children who had lost so much could not sleep at night. They feared waking up to find themselves once again homeless and without food. Nothing seemed to reassure them. Finally, someone hit upon the idea of giving each child a piece of bread to hold at bedtime. Holding their bread, these children could finally sleep in peace. All through the night the bread reminded them, “Today I ate and I will eat again tomorrow.”

I love everything about that story –the problem and the simple solution. I can relate to the persistence of old feelings and fears—and how any kind of deprivation can cast a long shadow.

Each time I read it I ask myself: What am I trying to hold on to now to meet a need that was in the long ago past? Are all my shoes a kind of “bread”? Old relationships? Old ways of relating to others? And what new bread might I ask for and hold instead? Bread is a spiritual metaphor in every faith—so what “bread” can I hold onto instead of shoes, scarves, resentments, fears, jealousies and my own cozy ego?

Cancer Doesn't Correlate

2011-07-06T19:26:00.000-07:00

We so badly want cancer to be caused by something other people do that we don’t. She used to smoke. He eats so poorly. She’s a worrier/has a lot of anger/doesn’t express feelings. He was always in the sun. Maybe it’s a family thing? Was there cancer in his family? Didn’t her sister have cancer?

It’s our voodoo hope. “If I don’t do the things the things they do I won’t get cancer.”

But no, cancer doesn’t correlate.

Infidelity Keeps Us Together

2011-07-04T08:42:00.001-07:00

That’s the title of yesterday’s cover story in the New York Times magazine. Mark Oppenheimer writes about sex columnist Dan Savage and Savage’s suggestion that marriages need less fidelity and more flexibility. Basically what Savage is suggesting is that monogamy isn’t quite natural and that we do relationships a disservice by pretending or insisting that absolute monogamy be the standard.

What’s good is that Savage is not espousing secrets or affairs or running around—rather he’s advocating for talking to your partner before, after, and during marriage to say, “This is who I really am; what I really want; and “Will you still love me if I need to try this out?” In a way, he’s talking about a very high form of commitment.

But just the title and then reading the article was disturbing. (Click on the link below to read the article). Right away I found myself asking, “What if John said he needed something –some kind of sexual experience—I couldn’t offer or even try?” Would I love him enough to say, “Ok, go be you?”

I doubt it.

In the article other experts on sex and marriage weigh in to say that some open marriages work but most do not—not because of the sex but because of the emotions and the dishonesty—again, not the dishonesty of the partner who needs to go outside the relationship but the dishonesty of the partner who agrees or acquiesces and then realizes they really are not OK with that.

But then the bigger and more personal question to myself is this: Do I have the right to want and insist on monogamy and fidelity in our marriage? This is a marriage that came to be from infidelity—so did I forfeit my rights by marrying a man who left his wife? Or do we painfully know just how high the cost is and not wish that on ourselves or on any others?

Reading this article provoked a deep and daring conversation with John about our love life and our sex life and our intellectual lives—and how we keep all of those alive so we can keep things fresh and exciting. And what it means to be sexually “good, giving and game” in a monogamous marriage.

http://www.nytimes.com/2011/07/03/magazine/infidelity-will-keep-us-together.html

Pure Romance

2011-07-02T09:49:00.000-07:00

In the Sex and Cancer workshop a few weeks ago I got to hear Vickie Yattaw, who is a Registered Nurse and Oncology Educator. She provided a lot of resources. One was the company, Pure Romance—a “sensuality toy company”. Vickie recommended some of their lubricants for women during and after chemo and cancer.

These products are, of course, great for women during and after menopause as well. So I went online to www.PureRomance.com to place my first order. I’ll keep you posted on the products—I bought one that is pretty basic and one that is described as “chocolate” and “tingling”. We’ll see.

But the best part of my little adventure on the Pure Romance site is the founder—Patty Brisbane’s -- blog called “Under the Sheets”. She writes about couples and communication. It is the most delightful thing to see sex framed in the context of good communication and good relationships.

http://www.pureromance.com/

Fighting for Us

2011-06-30T16:11:00.000-07:00

This weekend we battled. All the ingredients were there: hungry, tired, bad traffic, a long car ride, a difficult family member, my expectations, his assumptions.

Later, after the swearing was over, we talked about what happened. I need to speak up. He needs to ask questions. We need to plan for the emotions that are provoked by family. I need to take it less personally. He needs to take it more seriously. We both apologized.

But still later, after the make-up sex was over, we talked again and came to this new idea: When we fight we need to fight for the relationship and not against each other. Yes, easier said than done in the heat of the moment, but a new idea, that makes us allies --even in war.

Spiral Worries

2011-06-27T05:19:00.000-07:00

Ugh..the worries spiral. Work, relationships, work, relationships. When I’m sad I don’t want to work, when I don’t feel like I’m working well, I worry about losing my job, when I think I could lose my job I worry about what will happen to the relationship if I lost my job. The spiral goes faster until I cry or get so mad at him and me, mostly me.

I know that prayer and faith is the answer but I fight to trust God.

That feels like my task today: slow down and trust God. Even though it seems like the most counter-productive thing to do.

I don’t know where else to put this but in God’s hands. And when it gets—I get—like this it’s the most impossible thing to do.

Holding Our Own: Art and Death

2011-06-23T19:08:00.000-07:00

Tonight in our class on Death and Dying we watched an extraordinary video called “Holding Our Own”. The subtitle is “Embracing the End of Life”.

This documentary is about fabric artist Deidre Scherer who creates fabric “paintings” from real life sketches of people who are dying. Her work is extraordinarily beautiful and her craft amazing in the ways she creates super-realism in portraiture using fabric. But the other beauty is her belief and philosophy about the role that death plays in life.

The second focus of this film is the Hallowell Chorus in Burlington Vermont. Hallowell is a group of amateur and professional singers that participate in Hospice in Burlington. They come to homes and hospitals to sing to and for people who are actively dying.

These artists speak about their feelings and beliefs about death and what they have learned about their own lives thru the experience of singing for and creating art with the dying.

This video was produced by Paul Newman and it’s available from Netflix or can be purchased on Amazon. It’s a fabulous intersection of creativity and death—which is to say generation-- or life and death.

Baseball and Safely Home

2011-06-19T16:07:00.000-07:00

Sports, like religion, offer these consolations: A diversion from the routine of daily living; a model of coherence and clarity; a heroic example to admire and emulate, and a sense of drama and conflict in which nobody dies.

In baseball we begin and end at home. Home plate is not fourth base. Our goal in this game is to get home and be safe. Home is a concept rather than a place. Home implies safety, accessibility, freedom, comfort. It’s where we learn to be both part of and separate. The object in baseball is to go home, and to be safe.

When a runner charges home we lean forward to see the home plate umpire slash his arms downward signaling that the runner who may have crashed onto the ground in, in fact, safe. Isn’t that what we all want? I do. In my daily life I want whatever is bigger than me and whoever is judging me to see how fast I run and how precariously I slide and to say, as I slip and slide, “She’s safe!”

Those who believe, whose faith is strong, accept that umpire/God at his gesture and stand up relieved. Some, like me, despite wanting it are afraid to believe or struggle to trust. I have --over and over-- sensed that “safe” signal, but I am unbelieving. I run the bases again, skidding and scuffing. Again he signals, “Safe!”, but again I go to bat. What baseball offers that life does not is the agreement that we will believe it when we are told that we are home and that we are safe.

Courage Sex and Cancer

2011-06-15T16:54:00.000-07:00

Tonight, for the first time, I feel like I really get what courage means in CancerLand.

I was part of a panel at The American Cancer Society Hope Club in Latham, New York. We were bravely and boldly discussing what sex is and can be when a partner has cancer or/and is receiving treatment—or what happens after treatment to men’s and women’s bodies.

Much of my perspective is represented on this blog—the crazy hunt for honest and frank information, my belief that sex is so important especially during cancer—that when a couple is faced with the pain and fear and just plain crap of cancer that a healthy sexual relationship is a way to keep love strong and to boldly defy thanatos—the death wish.

So I read and spoke to all of that. And then…

And then Vicki Yattaw, RN from the CR Woods Cancer Center spoke about sex and cancer. Oh my God—this was the sex talk that every woman wants to hear—with or without cancer Vickie had the info, advice, perspective and loving humor on everything from how to have sex in every possible way, during every kind of health crisis, how to boost your own libido and help a partner boost theirs, and even “BoBs”—battery operated boyfriends.

Her information blew me away. I thought I shocked the crowd by sharing my story of having to ask John’s oncologist, “Can I swallow?” (The doc didn’t know). Vickie not only knew—(wait 48 hours after chemo) but she explained how people with colostomies have sex (they do and it can be great) and how orgasms decrease nerve pain and make you look younger. Yes!

I’ll share more of her info here in the next few weeks. But I have to say now that the best speakers of the evening were the participants in the group: some couples and many singles who had or have cancer and who want a sexual life now and later. People spoke so deeply and honestly—because Vickie set the stage for all of us to use sexual words—and showed me that everyone—young or old, plain or pretty, coupled or not—want good sex lives.

And thanks to Tracy Pitcher, MSW—Director of The Hope Club and Vickie Yattaw RN—there is the start of open conversation about love—and sex!--in the time of cancer.

You Look Great and Other Lies

2011-06-12T18:13:00.000-07:00

Click below to read a great article from today's New York Times on how to be a good friend to someone who has a serious illness:

http://www.nytimes.com/2011/06/12/fashion/what-to-say-to-someone-whos-sick-this-life.html?_r=1&pagewanted=all

Sex Ed for Cancer and Caregivers

2011-06-09T04:24:00.000-07:00

Next Monday night The Hope Club (formerly Gilda’s Club) in Latham New York will host and evening of Sex and Cancer. It will be a panel presentation and open discussion about the anatomy, physiology, chemistry, etiquette, hope, fear and what real people really do when they make love in the time of cancer. I’ll be part of a panel that will provide information, education and lots of opinions and laughter too. And refreshments!

The panel includes Tracy Pitcher, Director of The Hope Club and Outreach for the American Cancer Society and Vickie Yattaw, RN—nurse educator—who does lots of education around sex and cancer. So bring a friend and come join the discussion.

Monday June 13th 6 to 8 pm at The Hope Club One Penny Lane—off Wade Road—off exit 6 of Route 87 Latham, New York

What the Living Do

2011-06-06T17:23:00.000-07:00

Johnny, the kitchen sink has been clogged for days, some utensil probably fell down there.
And the Drano won't work but smells dangerous, and the crusty dishes have piled up

waiting for the plumber I still haven't called. This is the everyday we spoke of.
It's winter again: the sky's a deep, headstrong blue, and the sunlight pours through

the open living-room windows because the heat's on too high in here and I can't turn it off.
For weeks now, driving, or dropping a bag of groceries in the street, the bag breaking,

I've been thinking: This is what the living do. And yesterday, hurrying along those
wobbly bricks in the Cambridge sidewalk, spilling my coffee down my wrist and sleeve,

I thought it again, and again later, when buying a hairbrush: This is it.
Parking. Slamming the car door shut in the cold. What you called that yearning.

What you finally gave up. We want the spring to come and the winter to pass. We want
whoever to call or not call, a letter, a kiss--we want more and more and then more of it.

But there are moments, walking, when I catch a glimpse of myself in the window glass,
say, the window of the corner video store, and I'm gripped by a cherishing so deep

for my own blowing hair, chapped face, and unbuttoned coat that I'm speechless:
I am living. I remember you.

"What the Living Do" by Marie Howe

Memorial Day 2011

2011-05-30T13:17:00.001-07:00

Simple rituals. Simple facts. Yesterday I gave a talk on military mental illness and the economics of veteran’s mental health. I was blessed to have the podium at a wonderful social justice church in Troy, New York. I spoke about the China Marines and the survivors of the Palawan massacre in World War II.

Today John and I went to the local Memorial Day parade. We walked for an hour—he looking for students and me waving to vets—the older the better. And the “Vets for Peace” and “Grannies for Peace” too.

The man who married us was walking in the parade and he came over to say hello and gave me a flag on a stick. “You need a flag to wave” he said. And indeed I do.

Gratitude

2011-05-24T18:14:00.001-07:00

When I write the word “Gratitude”

I think recovery.

I don’t think “cancer”.

I think gratitude for him

for me, for this

--surely not this?

We are grateful or we are not.

We say Yes! and Thank you!

All around me well-meaning

friends say,

“You can say ‘No’!”

But I say Yes

I don’t No

Who knew…

“It’s like a relationship on steroids” I

told a friend

then realized

that was no metaphor.

Relationships and Cancer

2011-05-17T17:06:00.000-07:00

Relationship and cancer. Relationship with cancer. Relationship when you know your heart will be broken--but not before it is healed and opened wide. Take a look at this relationship and cancer story from today's New York Times.

http://video.nytimes.com/video/2011/05/16/health/100000000821590/love-endures-all-even-cancer.html?nl=todaysheadlines&emc=thab1

Save the Date: Sex and Cancer

2011-05-14T12:32:00.000-07:00

There are a lot of things to feel squeamish about with cancer. But sex isn’t—or shouldn’t be—one of them. So here is a chance to listen, learn, talk and ask questions about sex and cancer. Mark your calendar:

Monday June 13th --7 pm to 9 pm

at The American Cancer Society Hope Club (formerly Gilda’s Club)

One Penny Lane—off Wade Road—off exit 6 of Route 87 Latham, New York

There will be a panel presentation and open discussion about the anatomy, physiology, chemistry, etiquette, hope, fear and what real people really do when making love in the time of cancer. I will be part of the panel along with other experts on cancer, caregiving and sex.

Sex Education

2011-05-07T14:37:00.000-07:00

When I was in Junior High there was a popular song called “Get Yourself a College Girl”. The boppy, beach-boy lyric went like this: “”Get yourself a college girl, a well-read book, a knowledge girl. Get yourself a coll-edge girl.”

I hummed that song all the time—maybe thinking it was affirmation that skinny but smart girls like me could be just as desirable as my classmate Bethany Springer, who started wearing a bra in Grade Six.

Now I am reading the new book, The Social Animal, by New York Times columnist, David Brooks and last night my eyes were opened by this paragraph:

“Men want to do the same sexual acts regardless of education levels, but female sexual preferences differ by education, culture and status level. Highly educated women are much more likely to perform oral sex, engage in same-sex activity and experiment with a variety of other activities than less-educated women. Religious women are less adventurous than nonreligious women, though the desires of religious men are not much different than those of secular ones.”

I guess a little learning goes—and comes—a long way.

Cancer101 Cancer Planning

2011-04-30T13:03:00.000-07:00

“There are wedding planners and baby planners; why not a cancer planner?”

That’s what Monica Knoll thought as she struggled through years of managing her own cancer, and that thought led to her design and launch of the nonprofit and web-based, Cancer101.

Knoll was motivated to find and found a new kind of resource for people going through lengthy cancer treatment as a result of the way her work and career were impacted by first breast cancer and then later ovarian cancer. She found quickly that cancer stigma is strong and persistent in the workplace. Juggling cancer in the long-term is a challenge to workers and workplaces. Hence Knoll’s creation.

Do take a look at: http://www.cancer101.org/

Good Friday

2011-04-22T04:59:00.000-07:00

I have an Easter memory from years ago. I was living in Washington, DC, and that year was a low point in my life. My older sister had recently died and both of my brothers were seriously ill; my best friend was leaving town, and on top of that I was questioning my work.

In my journal that April I wrote, “Am I depressed?” When I read those pages now I laugh and shake my head. “Depressed?” That I even had to ask. In that long year I thought I’d never laugh again, just as I thought I’d never again feel love, the joy of easy friendship, or the satisfaction of good work.

I went to church that Easter out of both habit and desperation. I had grown up in a church going family. It was what we did. And so to honor the family that I was losing I went. I chose a big downtown church for Easter services—one with hundreds in the congregation--not daring to visit a smaller church where I might have to speak to people or be embarrassed by my own tears. I wanted the paradoxical safety and anonymity of being in a crowd.

The minister that Easter Sunday said many things that I don’t remember but one sentence has stayed with me all these years. He said, “We live in a Good Friday world…” That I understood. A Good Friday world is a world full of suffering, questioning, unfairness, trouble, mistakes, hurts, losses and grief. That was certainly confirmation of my life that day. “But”, he continued, “We are Easter people.” Those words stopped me cold. I was stunned to be reminded that painful morning that there was something other than what I was feeling.

My life was not instantly transformed; his words did not change the course of my brothers’ illness; nor give me answers to my questions. But the idea of being “Easter people” gave me a pause in my grief and the teeniest hope that there really did exist something other than pain.

Today all of the things that hurt so much back then have changed. As my brothers died friends came forward to help. I began to write and publish. Months later I fell in love and moved to upstate New York where a new life began with new friends, new work and yes, of course, new problems.

What strikes me now is that this believing in “Easter” in the midst of “Good Friday” is as much about being an American as it is about being Christian. Americans are, by character, a people of reinvention. There is an extra layer of intention that we bring to “new life” that isn’t true even in other predominately Christian cultures. As Americans we are future oriented, we look forward not back, and we are, for the most part, a culture of optimistic, hopeful people.

The gift from that Easter service many years ago was the reminder that we are, by religion or culture, a people who believe in possibility. When our hearts are shattered we are sometimes shocked to discover that there is joy as well as pain inside. Out of the ashes of our mistakes, from our defeats and even our despair, we rise again in better lives.

The "C" Word

2011-04-18T16:32:00.000-07:00

Oh no, oh yes…the “C” word again.

Last week I was at an oncology-hematology center that is near where I work. This time I was there for me. It just happened to be the most convenient place to have some blood work done that my doctor requested as part of my annual checkup. But what was I thinking? It’s a chemo place! And it had all the same sights and sounds and smells as the place that I went to with John for 16 months. I had so underestimated the impact and so did not understand how much creeping trauma I was still carrying around just based on that environment.

But I did my time in the lab and had to wait for the nurse so I did what I always do—I raided their magazine stash. Same stuff: CURE Magazine, Breast Cancer Magazine, Your Chemo Today—why would anyone want to read that stuff? But read I do and so I pick up “Your Guide to Chemotherapy” because on the cover it said: “Sex, Intimacy & Cancer” and I thought, “Hey, here it is the article I have been waiting for.”

But sadly no. The article about Sex, Intimacy and Cancer was about—yes—the “C” word: Cuddle. More bad guidance from Cancer Land where everyone cuddles and no one gets laid.

I really hate these chemo-cuddle stories. They are infantilizing and demoralizing. I know they mean to be helpful but I just gotta believe it would be so much more helpful to say, “No stiffy? Here’s what ya do” or “Your partner may need to F*** like a bunny just to feel alive so go with the flow.”

Here is a maybe 600 word article on SEX and not once do they use the words penis or vagina. That is just sad. What it says to readers is, “Not only do you have cancer but we think you are stupid too.”

And—I’m steamed up here—“Taking a long walk together” is NOT “part of sex”. Unless, that is, you are walking to the porn shop or to the bed room in a really big house.”

Love in the Time of Cancer

2011-04-12T17:04:00.000-07:00

Here is a true story of Love in the Time of Cancer. This is from today's New York Times from Tara Parker-Pope who writes the "Well" column in the Times' Health section. This inspires humility. Not just two cancers but a baby too. Click below and read on:

http://well.blogs.nytimes.com/2011/04/11/a-couples-knot-tied-tighter-by-dual-diagnoses/

Slogans for Caregivers

2011-04-11T04:41:00.001-07:00

I’ve been thinking about slogans this week. We use slogans in 12-step programs and Buddhist tradition uses slogans to teach the Eight-fold path. Self-help uses slogans and bumper sticker sayings as reminders. The power of a slogan is that it is memorable and if practiced it can kick in just when you need it.

So what would be good slogans for caregivers? A couple that come to mind right away are: Put on Your Own Oxygen First (when you want to do one more thing) and Ask and Ask Again (dealing with doctors, nurses and health insurers) and Tell Someone the Truth.

That last one is lifesaving because every caregiver has to have someone—not the patient and probably not even a family member --that they can tell their darkest truth to—all the scary yucky feelings like anger, resentment and wishing the patient would die. (Don’t believe a caregiver who says they have never had that thought—you are obviously not their “someone”.)

Something I heard this week that could also be a caregiver slogan is Whose Need is It? This is one I could use often I think to decide if I’m asking something of the patient because I have a need for their presence or to decide if they actually are the one who has a need for mine. It helps to keep expectations a bit clearer and maybe that would help the anger and resentment to decrease.

Taboo and Curse

2011-04-06T16:24:00.000-07:00

Reading more of James L. Kugel’s wonderful book, “In the Valley of the Shadow”. He weaves together theology, religion, research and his personal experience with cancer. In a fascinating chapter about the role of omens and taboo practices in ancient cultures he bridges back to his illness and the experiences in our culture around cancer. He writes…

“In fact, almost the sole remnant of that very ancient mentality in the world today is the way we feel about cancer; it is still potent magic. In many languages, although the word cancer is well known, people avoid using it in ordinary speech. “He’s very, very tired” they say in my in-law’s part of France, while, “He has the sickness” is common in Israel, and no doubt elsewhere. Saying the actual word might cause it to come into existence—in you or in the person you are talking to—or, at the very least, it may hasten the end of the person you are discussing.

Until recently the New York Times obituaries would say, “…after a long illness.” Doctors themselves try to let patients down easy by avoiding the C-word, or even “tumor” instead what is discovered is “a slight growth”, “an unusual polyp” or “an irregularity that should be checked.” Despite all clinical evidence many people still avoid shaking a cancer sufferer’s hand.”

In the Valley of the Shadow

2011-04-02T14:18:00.000-07:00

I’m reading theologian James Kugel’s new book, “In the Valley of the Shadow” in which he examines the state of mind and sense of human smallness that comes when one is diagnosed with a serious illness. Fascinating that Kugel’s response to his own terminal diagnosis is his choice to follow and document his own thoughts and changed sensibility. A scholar, thinker and theologian even unto death.

There are many wonderful things in this book. Part of what stands out is how Kugel’s awareness of himself and others shifts as his illness proceeds. Here is an example:

“Most people, when they see someone ravaged by chemotherapy, just tend to keep their distance, and I suppose that my colleagues, experts in ancient and medieval religion, were no exception. Fear also plays a role. “That could happen to me” is rarely spoken but often thought. If people do talk to you about your condition, they usually get around to asking you what your first symptoms were---this could be useful information, after all! Some are also eager to discover something in your family history or some aberrant feature of your diet or daily regimen that can be blamed for your catastrophe while leaving them in the clear…All this, I’m afraid is merely human.”

What Really Matters?

2011-03-30T04:00:00.001-07:00

There are many strategies for discernment. Many spiritual techniques and practices taught by experts in psychology, spirituality, even management. But there is nothing like seeing an irregular mole that wasn’t there yesterday to snap my mind into, “What really matters?” I go into mental triage: What now? What later? And while it is a bit paranoid and a kind of self torture to always be killing him off like this —it is also a gut compass that points me to the truest truth about what matters to me and who I am—good and bad—if his cancer does return.

Let Evening Come, Jane Kenyon

2011-03-29T03:58:00.000-07:00

Let the light of late afternoon
shine through chinks in the barn, moving
up the bales as the sun moves down.
Let the cricket take up chafing
as a woman takes up her needles
and her yarn. Let evening come.
Let dew collect on the hoe abandoned
in long grass. Let the stars appear
and the moon disclose her silver horn.
Let the fox go back to its sandy den.
Let the wind die down. Let the shed
go black inside. Let evening come.
To the bottle in the ditch, to the scoop
in the oats, to air in the lung
let evening come.
Let it come, as it will, and don’t
be afraid. God does not leave us
comfortless, so let evening come.

--Jane Kenyon

Last Days, by Donald Hall

2011-03-28T04:23:00.000-07:00

“It was reasonable
to expect.” So he wrote. The next day,
in a consultation room,
Jane’s hematologist Letha Mills sat down,
stiff, her assistant
standing with her back to the door.
“I have terrible news,”
Letha told them. “The leukemia is back.
There’s nothing to do.”
The four of them wept. He asked how long,
why did it happen now?
Jane asked only: “Can I die at home?”
Home that afternoon,
they threw her medicines into the trash.

Jane vomited. He wailed
while she remained dry-eyed – silent,
trying to let go. At night
he picked up the telephone to make
calls that brought
a child or a friend into the horror.

The next morning,
they worked choosing among her poems
for Otherwise, picked
hymns for her funeral, and supplied each
other words as they wrote
and revised her obituary. The day after,
with more work to do
on her book, he saw how weak she felt,
and said maybe not now; maybe
later. Jane shook her head: “Now,” she said.
“We have to finish it now.”

Later, as she slid exhausted into sleep,
she said, “Wasn’t that fun?
To work together? Wasn’t that fun?”
He asked her, “What clothes
should we dress you in, when we bury you?”
“I hadn’t thought,” she said.
“I wondered about the white salwar
kameez,” he said –
her favorite Indian silk they bought
in Pondicherry a year
and a half before, which she wore for best
or prettiest afterward.
She smiled. “Yes. Excellent,” she said.
He didn’t tell her
that a year earlier, dreaming awake,
he had seen her
in the coffin in her white salwar kameez.

Still, he couldn’t stop
planning. That night he broke out with,
“When Gus dies I’ll
have him cremated and scatter his ashes
on your grave!” She laughed
and her big eyes quickened and she nodded:
“It will be good
for the daffodils.” She lay pallid back
on the flowered pillow:
“Perkins, how do you think of these things?”
They talked about their
adventures – driving through England
when they first married,
and excursions to China and India.

Also they remembered
ordinary days – pond summers, working
on poems together,
walking the dog, reading Chekhov
aloud. When he praised
thousands of afternoon assignations
that carried them into
bliss and repose on this painted bed,
Jane burst into tears
and cried, “No more fucking. No more fucking!”

Incontinent three nights
before she died, Jane needed lifting
onto the commode.
He wiped her and helped her back into bed.

At five he fed the dog
and returned to find her across the room,
sitting in a straight chair.
When she couldn’t stand, how could she walk?
He feared she would fall
and called for an ambulance to the hospital,
but when he told Jane,
her mouth twisted down and tears started.
“Do we have to?” He canceled.
Jane said, “Perkins, be with me when I die.”
“Dying is simple,” she said.
“What’s worst is… the separation.”

When she no longer spoke,
they lay along together, touching,
and she fixed on him
her beautiful enormous round brown eyes,
shining, unblinking,
And passionate with love and dread.

One by one they came,
the oldest and dearest, to say goodbye
to this friend of the heart.
At first she said their names, wept, and touched;
then she smiled; then
turned one mouth-corner up. On the last day
she stared silent goodbyes
with her hands curled and her eye stuck open.

Leaving his place beside her,
where her eyes stared, he told her,
“I’ll put these letters
in the box.” She had not spoken
for three hours, and now Jane said
her last words: “O.K.”

At eight that night,
her eyes open as they stayed
until she died, brain-stem breathing
started, he bent to kiss
her pale cool lips again, and felt them
one last time gather
and purse and peck to kiss him back.

In the last hours, she kept
her forearms raised with pale fingers clenched
at cheek level, like
the goddess figurine over the bathroom sink.
Sometimes her right fist flicked
or spasmed toward her face. For twelve hours
until she died, he kept
scratching Jane Kenyon’s big bony nose.
A sharp, almost sweet
smell began to rise from her open mouth.
He watched her chest go still.
With his thumb he closed her round brown eyes.

Jane Kenyon and Donald Hall

2011-03-27T08:31:00.000-07:00

Jane Kenyon and Donald Hall: Poets, lovers, husband and wife. Both had cancer . Donald, much older, lived. Jane, much younger, died. But, both being poets, they had the habit of turning all life experiences into poems. So we have poetry collections from each of them describing each turn and phase of their roles as caregivers and as patients. It’s fascinating to read them together and to trace the intrusion and trajectory of cancer through their loving—and sexy—marriage.

Here is a poem by Jane Kenyon when she is ill and Donald is her caregiver:

I saw him leaving the hospital
with a woman's coat over his arm.
Clearly she would not need it.
The sunglasses he wore could not
conceal his wet face, his bafflement.

As if in mockery the day was fair,
and the air mild for December. All the same
he had zipped his own coat and tied
the hood under his chin, preparing
for irremediable cold.

Coats, by Jane Kenyon

Sex

2011-03-21T04:36:00.001-07:00

Sex becomes so important when I think about him dying. But that makes sense, doesn’t it? Sex is generation and death, annihilation.

Always the Counting

2011-03-20T16:30:00.001-07:00

When I was a little girl I would sit with my mother while she visited with neighborhood women. I’d play while they talked. I remember a certain bafflement when they talked about some young person who just got married or when a first baby arrived. They counted backwards on their fingers. I didn’t understand till years later that they were counting backwards from 9—nine months—to determine if that baby had been conceived before the wedding.

Similarly I have this tick of counting when I read of someone dying from correctol cancer. How many months? How long after diagnosis did they die? And then I compare John’s dates and make my corresponding assumptions and deals with God.

I did it today reading Meghan O’Rourke’s memoir, “The Long Good-Bye” about her mother’s death. A beautiful book, I read it noting the literary allusions and the dates—counting, always counting. O’Rourke’s mother died two-and a-half years after diagnosis. I think back; how many months is it now for John? OK—we’re past that marker so is that good—he’s out of the woods? Or is that bad—he’s closer to bad news?

I did this also when Tony Snow, White House press spokesman, died in 2008. His diagnosis was the same as John’s and he died a month short of three years. Knowing the similarity of their diagnosis and treatment he was a scary marker for me. And so I’d count.

I can feel my mother in me when I tick off the months and years, 2011, 2010, 2009 and I know that the clock is inside of me, ticking, ticking, ticking.