Ordinary Time in CancerLand

In the Catholic Church’s liturgical calendar there is an acknowledgment of “Ordinary Time”. This is the time that falls between holidays; it is the times that is not Christmas or Easter or Good Friday or Advent.

It feels like that here in the land of love and cancer too. It’s not chemo or blood tests or attorney time. It’s not exhilaration or tragedy time.

This month is filled with grocery shopping, yoga classes, buying running shoes, parent meetings and girl friends. I am picking up library books, allergy medicine, dry cleaning and avocados.

Having been in CancerLand so long I have to stop and remind myself that this ordinary time is actually a kind of holiday. This time is the true luxury, the blessing and the most wanted gift.

In the Dark Street Shineth

Off we go trailing shopping lists and credit card receipts. Christmas is in one week. We may complain about our errands, and even about some of the folks on our list, but we do enjoy the festivity the holidays bring to our gray December days. It's no coincidence.

The holidays that celebrate light, Hanukah and Christmas, are aligned with the seasonal transit of the sun. It’s a leftover from earlier times when the religions of nature led all of the others. There was good reason, then as now, to run from the darkness. 

We know that ancient man feared that the sun had died.  It was his terror that the heat and light were gone. To coax the sun god back our ancient relatives created rituals.  The Druids lit bonfires. Now we celebrate with candles and lights in our windows. 

Spirituality is a way out of darkness and into hope and joy. The vehicle is mystery and a miracle, whether it’s oil that lasts eight days or the birth of a baby in a barn.

In the Northern Hemisphere this is a time when we face our vulnerability. Weather is the least of it. We all have moments of darkness: our grief, fears and regrets. The darkness we fear most, of course, is the grave. We still think we can outrun it. So some of us go to the Caribbean and some to sunlamps or light boxes; many pursue spirits, religious or distilled. Like our ancestors we too want the sun to come back and give us life again. So we go to the stores and burn up our credit cards; we sacrifice our savings as we gather at the mall where we may find what passes for community. 

But we still fear the dark. Much of what we do this time of year is about distraction. Not unlike whistling when we pass a graveyard, now we sing and shop and light candles and eat too much. And we complain. A lot. But maybe our railing against our holiday chores is itself a part of the solstice. Now when we are oppressed by darkness –when our primitive fears can be felt even through layers of advertising and anti-depressants-- we are drawn to the lights and to other people as our defense against the dark, just as our ancient relatives were drawn to stars and fires.

We talk of holiday depression as if it’s somehow wrong or an aberration. But these holidays we’re celebrating, Hanukah and Christmas, are also about darkness. Sometimes we forget that. But it’s true: the flip side of each story is about the darkness at the edge of the light. 

The words of this Christmas carol could just as well be a Solstice song: Yet in the dark street shineth, the everlasting light; the hopes and fears of all the years are met in thee tonight.

We’re fighting something ancient, natural and necessary. Occasionally we need to feel the darkness—even symbolically--like we sometimes need a dark night or a wild storm.

So maybe there is another way to experience this day. On this, the darkest night, what if we allowed the darkness and went toward it, daring ourselves to sit still before we light the candles or the tree. What if we sat a moment seeing the tree in darkness--and breathed. That’s what solstice is about. We can enter the darkness and emerge transformed. We can stand it.

Tomorrow the sun will be at the most southern point of its transit. And what is coming is the longest night of the year. Starting Wednesday our days will grow longer again. The cycle is astronomical and holy. On this night we are as ancient as ever.

Christmas in CancerLand

Years ago it was cancer at Christmas. The first surgery. The news about chemo. Having hope at the holidays. I found that old blog post “Christmas Past” this week. I am surprised that we were able to be so be happy then while we were in the thick of it. And surprising to remember that we found serenity and sensuality even in those first few forays into

CancerLand.

Here is the old post from our first year in Cancerland:

“It’s all here. Love and carols, candlelight service at the United Methodist Church last night, sleeping late and making love through the morning, a sponge bath then washing his hair over the side of the tub—he cannot get the stitches wet for three more days—a walk in the neighborhood, opening gifts—books and music, and tickets and clothes for both of us. These are the things we have shared and talked about from the first day we met. Cashmere and satin and a collection of erotic poetry keep the love alive. We cook dinner together: Cornish game hens with smooth small breasts, artichokes to slide through our teeth, potatoes soaked with butter and garlic and chocolate mousse. Christmas together. We never thought we’d see this. But here it is. We have both cancer and Christmas and it is enough.”

This year’s Christmas is different: Adopt-a-Family gifts, cooking, wrapping, shopping Amazon last minute, the annual trip to buy my mother-in-law’s gift, texting the kids, realizing that the new family we made in that isolated first year has become the real family, and that we continue to love and be loved. For all of this we are so grateful.

A Man, A Can, A Plan

I am NOT a good cook. Let’s get that straight. But I like to play with food and I LOVE cookbooks! I have tons of cookbooks, which always makes guests laugh when they see the shelf in our kitchen. But, for me it’s all about culture, language, history, and social psychology.

Tonight I made a meal from one of my favorite “weird” cookbooks. I have a whole category of weird cookbooks: The Beet Cookbook, The White Trash Cookbook, and today’s pick, a cookbook called: “A Man. A Can. A Plan.” 

This is a cookbook for men who can’t cook—bachelors of a certain era, divorced guys, etc. It’s written in very guy language—explains what utensils are—“grab one of those big spoons with holes in it”. And it’s made of that very thick, shiny cardboard, the kind of pages you

see in books for babies. But the cool part is that all of the the recipes are based on food that comes in cans. Yes, my dear friends who only eat organic or local or vegan will just die thinking about this book. So die. There is good food in this book—
Think Grandma. Think church supper.

Tonight’s yummy casserole was “Spaghetti Western”:

Two cans of Spaghetti O’s. One can black beans. Half pound ground round, two chopped scallions, 2T grated cheddar, 2T chili powder. Cook all in one pan. Six minutes tops.

Add nice salad: Baby spinach, Bibb leaves, a tomato, (sure, organic) salt & pepper, juice of half lemon and olive oil.

Dinner was ready in under ten minutes and it was delicious. And there are leftovers.One serving: 450 calories and 14 grams of protein. Which means I can have biscotti and ice-cream while we watch another episode of “To Serve Them All Our Days.”

Conversations at Thanksgiving

This week we are preparing for Thanksgiving. There is a lot of shopping and cooking in the next few days --but there are also emotional preparations to be undertaken this week. Like many, you may be torn between the happy anticipation of a good meal and seeing family, but also the dread of family feuds that leave you wishing to hide in a corner of the living room. 

Along with the usual  “issues” that each family faces around the turkey table—the in-laws, sibling rivalries, and adolescents with attitude—we can stir in some raw feelings about national politics this year. It’s Thanksgiving in the REAL America and nobody’s very happy.

So many of us so want it to be the other Thanksgiving, the one we imagine that other

families have, but which really only happens in made-for-TV movies.  We think that our Thanksgiving is just not what it used to be-- But then again, it never was.

It seems that we can’t shake our romantic idea about that first one with the grateful Pilgrims and the wise Indians, but it’s safe to say that most of us wouldn’t have been comfortable at that dinner either. The truth is that the Pilgrims, with their cute buckled shoes, weren’t innocent refugees from persecution. Rather they were religious zealots and not exactly tolerant.

Here’s the history: After the Protestant Reformation and the split from Catholicism—creating the Church of England--there were many who felt the church still needed to be “purified” of Rome’s influence. Those were the Puritans. Among the Puritans were some folks who were even more extreme and who wanted complete separation. These were the Separatists--we know them as the Pilgrims. These were not folks who believed in freedom of religion. What the Pilgrims believed was that the Church of England was corrupt; that Catholics were the Devil’s spawn and that they were superior in knowing God’s truth. 

We still have some emotional resonance of those ancestors and their vibe is with us at Thanksgiving. So be prepared. 

Part of the problem is that religion permeates this day directly or indirectly; someone or something is being thanked for the good in our lives, but there are political tripwires from the stuffing all the way through to dessert. Most of us will be sharing a meal with folks who not only mix their potatoes with their peas but who mix politics with their religion:  Every current event, everything in the headlines—the election, terrorism, the Middle East—touches religion in some way. And that intersection of religion and current affairs will cut right through the dining room table on Thursday.

Even saying grace is tricky. When the blessing includes a prayer for peace someone at the table will be listening for what kind of peace? And for whom?

On Thursday we may be humming, “We gather together…” but in our heart of hearts we want to insist that OUR team should win, that OUR recipe for stuffing is the best, and that OUR candidate was right.

So if you find yourself dreading the doorbell, or if Uncle Harvey mentions the President when he says grace, you may want to retreat to the kid’s table or sit in the den to watch the game. But instead, give thanks that this holiday comes only once a year, and remember--- it’s all in the spirit of the day.  

A Racial Gap in Breast Cancer Care and Survival

In today's Albany Times Union newspaper, Claire Hughes writes about the racial gap in both cancer

Claire Hughes, Times Union

care and out comes.

"Zipcode predicts your health better than genetic code."

All of us in CancerLand can pay attention to this and be supporters and advocates.



Here's the link to the Times Union story:

ww.timesunion.com/tuplus-local/article/Racial-disparities-persist-in-breast-cancer-10609663.php

Cancer and Financial Toxicity

We typically connect the word "toxicity" to cancer via concerns with radiation and chemotherapy---but here is research showing the serious concern--and health impact--of the real life worry about money for cancer patients and their families.

The additional stress of worrying about money is a factor in cancer care and recovery.

Take a look at the link below to read more:

http://psychcentral.com/news/2016/10/10/new-cancer-stress-cost-of-care/110956.html

What You Can Ask For--And What You Can't

I heard a great piece of relationship advice recently. This bit of wisdom really got my attention and gave me a way to assess whether I am being reasonable

or unreasonable when I get into that “wanting him to change” mood.

It goes like this: "You can ask a partner for a behavior change but not a personality change."  You can ask for behaviors you want from your partner but You can’t ask them to be different on the inside or to develop the characteristics that will cause them to think like you do.

For example, you can ask your partner take a turn doing the laundry or ask him to clean the bathroom on Saturdays—those are behaviors—but you can’t ask him to notice when the bathroom is dirty or when the kids need clean socks—those are aspects of personality. You can ask him to buy and mail his sisters birthday gift (But please, don’t judge what he chooses--don’t sabotage yourself.) But you can’t ask him, “Why don’t you remember your family’s birthdays?” That is personality.

Similarly, you can say, “I’d like you to give me one compliment each day.” –that’s a behavior. But it’s not fair to say, “Why don’t you appreciate me?”—That’s personality. And probably the start of a fightJ.

That’s pretty much like saying, “Why don’t you become me?” And really, would I ever want to be married to me? I don’t think so.

There is Only the Dance

At the still point of the turning world. Neither flesh nor fleshless; Neither from nor towards; at the still point, there the dance is, But neither arrest nor movement. And do not call it fixity, Where past and future are gathered. Neither movement from nor towards, Neither ascent nor decline. Except for the point, the still point, There would be no dance, and there is only the dance.

(from TS Eliot, Burnt Norton II)

Reading & Writing Cancer

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

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

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

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

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

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

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

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

Changing Normal: One Couple. Two Cancers.

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

It’s a story about alternative treatments for bladder and lung cancer, and a story primarily

about how to advocate for truly integrated medicine. Henner is known to many of us from the TV show “Taxi”. And in the book she is just as loveable and a lot fiercer about taking on the medical establishment.

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

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

Money and Cancer -- Double Taboo

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

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

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

cancer care of a loved one?

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

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

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

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

Here are some of the articles in the publication:

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

Risky Business: Concerns about insurance should be addressed early.

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

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

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

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

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

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

Why Write About Cancer?

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

And I write a lot: I write the blog, “Women in Recovery”, and the books: “Looking for Signs” (A collection of essays) and “Out of the Woods” (about women in Twelve-step recovery), and

recently, “Never Leave Your Dead” (about military trauma and family trauma and redemption).
And I write newspaper columns for the Albany Times Union and many other papers...

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

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

Beach Surrender

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

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

and even the people that I fuss with in my head.

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

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

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

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

Immunotherapy Uses Drugs to Boost Immune System for Cancer

This weekend's New York Times featured the second article by health writer, Denise Grady on the

Denise Grady, New York Times

increasing practice of "Immunotherapy". Currently, an experimental treatment, immunotherapy uses drugs to boost or challenge the patient's own immune system to fight cancer.

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

http://nyti.ms/2aRJLQC

Baseball is Back

Baseball season adds another layer to our lives. We both love the game and are able to

teach each other. He knows more about NOW and I know more about THEN. I love the history, and he loves the Yankees. It’s a source of humor, anger, passion and of competition. It’s a source of metaphors too—many of them sexyl --which makes it even more fun.

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

I Remember Waiting

John’s surgery day. I’m at St. Peters Hospital in the waiting room. I watch the other waiters—family members, loved ones of patients. Some are young parents and their little ones are in surgery, some I think wait for an older patient—adult children are the waiters, some, like me, are spouses. 

I get my coffee and read my new Louise Penny book. Inspector Armand Gamache is such

good company here.  Wise and calming.

I am aware of the routine of this room. The docs come out to chat, to give an update, to tell how the surgery went. As they speak to the families in this room I hear joking, “Oh she’s awake—giving us a hard time.” I see the tension relieved. Docs squat or get down on one knee—eye level with family. Never stand over seated family to deliver news. 

But I stand up to stretch and see the row of doors behind me—closed doors, no windows, each one labeled:  2915 Consulting Room (In Use), 2916 Consulting Room (Vacant). And I stand and I stare at those doors.

I remember.

I was 18 years old. Allegheny General Hospital. My father was in Intensive Care. I was in the ICU waiting room with my mother and brothers. Other family members came and went for three days. We sat with other patient’s families for those three long days. I watched the pattern of movement. Even then I was a watcher. 

Sometimes—like here—the doctors came out to the family in the waiting room and talked to them—gave an update, described changes in status. 

But twice I saw the nurse call a family into one of the small private rooms and those families never came back to waiting. Once I saw a family leave the little room. They were standing near the elevator, crying. I knew.

So when, on the third day, they asked our family to step into the small private room, I knew. I knew before my mother did. I knew before the doctor took her hand. I knew before my brother held my arm. 

Today, at St. Peter’s I look at those doors at the edge of the waiting room and I wonder at the collective pain that gathers there. I wonder if it aggregates and if they ever use sage to “clear” the rooms, or if they bless them when they are empty, or maybe sprinkle holy water on the tables where wives and brothers drop their heads in surprise, hurt, shock and grief? I hope they do.

I remember.

Mary Roach-- Still Not Talking About Sex

I’ve been on a Mary Roach reading binge. Her gift is making science accessible and in particular, making squeamish topics understandable and often bringing compassion to those subjects.

Roach has written about diseases and doctors, swallowing, digestion and elimination, and she has a special fondness for corpses. And, as I wrote last week, she writes beautifully and informatively about sex.

As you know, from reading this blog, I am an advocate for the need to make information about sex and physical intimacy available to couples facing cancer. I push and pull, and cajole and occasionally rant. But I have also assumed that, maybe; in other parts of medicine the conversation is more open, more supportive.

But then I read Roach’s new book, “Grunt—The Curious Science of Humans at War,” and

discovered that sex talk is even more restricted in military medical settings. Alas.

In chapter 4 called, “Below the Belt” Roach is visiting Walter Reed Hospital and she is observing and interviewing urogenital specialists who are repairing and caring for veterans who have injuries “below the belt”. These injuries are called urotrauma. Male vets are having penises, testicles, and urethras rebuilt and sometimes recreated. Yes, very specialized and very sensitive work.

So these are mostly combat vets—the ones who risked life and limb (and apparently their genitals, sex lives and reproduction) for the rest of us to live free. So surely they will get the extra help to deal with their urogenital injuries?

But it turns out, no. Or not so much. It seems the squeamishness about sex extends—sadly—to veterans too. It’s especially odd since the diagnostic term is “urogenital sexual injury.” Clearly acknowledging these parts below the belt have duty assignments.

Here is Roach recalling a conversation with nurse manager, Christine DesLauriers: “Its amazing how many (medical providers) are frightened to bring it up.” 

A Marine once said to DesLauriers, “Christine, I’ve had 36 surgeries on my penis, I’ve had my shaft completely reconstructed, and not one dam person told me how I’m going to go home and use the thing on my wife.”

When Roach asked DesLauriers about the divorce rate, she replied: “Divorce rate? How about suicide rate. And what a shame to lose them after they’ve made it back. We keep them alive but we don’t teach them how to live.”

For me, that’s it right there-whether it’s cancer or combat: Keeping them alive but not teaching them how to live. So let’s keep this conversation open and ask for all medical personnel to get real about how to survive and how to thrive. Longevity and sex.

***

And yet more on veterans and trauma in my new book, "Never Leave Your Dead" published by Central Recovery Press.

Love --and Bonk!--in the Time of Cancer

This blog began because of sex. Sexual frustration actually. No, not with my partner but my absolute frustration with the medical community—oncology specifically, re: Sex.

When John’s cancer treatment began no one would talk to us about sex. They talked about drugs, food, even made recommendations for footwear, but no sex talk. I tried: I asked, I joked, I tried euphemism, and I tried being very direct. Nope, no sex talky.  All the caregiver literature used the “C” word though. Cuddle. Ugh. It was just so insulting, discouraging and frustrating.

So, I did what I always do when something really makes me mad: I started writing. At first I vented, then I educated. I got all the answers that no one would give me, and I shared them and then I kept writing.

This blog has become about cancer and couples, and relationships, and caregiving, and resources and research, and advocacy. But today it is—again—about sex. And some research and a resource that I think will make you say, “Wowsa!” and will make you laugh.

Over the last few years I have been writing my new book, “Never Leave Your Dead,” about military trauma so I have been reading everything about veterans. That led me to the amazing science writer, Mary Roach. I loved her new book "Grunt" about what happens to bodies in battle, But then I also found Roach’s older book, “Bonk: the Curious Coupling of Science and Sex."

So I started reading and I started laughing, and I started saying “Holy Crap!” so often I woke John up several times. In “Bonk!” Roach takes us through the stories of sexual research—not just the conclusions (clitoral versus vaginal orgasms; penis size; what impotence really is…) but also through exactly how that research is conducted.

I can truly promise that you will learn more about sex that you ever wanted to know—and you’ll learn some really good stuff too. 

And you will laugh.  Roach is a hysterically funny writer. Even when she is dead serious—like when she is writing about penises and corpses—her commentary and asides will make you choke.

And laughter after all, you know, is the very best medicine.

*****

(And yes, my new book is, "Never Leave Your Dead" published by Central Recovery Press.)

Greatest Toll is on Cancer Caregivers

An important article by Claire Hughes in today's Albany Times Union. Hughes reports on the recently released study, "Cancer Caregiving in the U.S."--a report from the National Alliance for Caregiving, a Maryland-based nonprofit.

The study, and Hughes article which shares personal stories, details the kinds of hands-on care and specific stressors that caregivers of a loved-one with cancer face.

I know that you already know this. You have had this experience or you are living it. But, I think, it does help to know that what you are experiencing is real, and documented, and that the stress and struggle of cancer care are not a failing, weakness, or personal.

This is an article to share with loved ones, friends, support groups and counselors--and oncologists.

Here is the link to Clair Hughes article in today's Albany Times Union:
http://www.timesunion.com/tuplus-local/article/Report-cancer-caregivers-offer-help-for-shorter-8312334.php

The Twelve Steps Help Caregivers Too

I was in a Twelve Step meeting yesterday and as I listened to how people apply the practice of the 12 steps to many parts of their lives like with their work, eating, kids, in-laws, money etc. I started thinking about how we can also apply the Twelve Steps to cancer and

caregiving.

If you’ve not been exposed to the original Twelve Steps that derive from Alcoholics Anonymous you can click on this link: 

http://www.12step.org/the-12-steps/

I believe these steps of recovery can be applied to caring for someone with cancer.  As a long-time caregiver here is my interpretation:

1. We admitted we were powerless…powerless over Cancer, over illness, over some doctors. And note that it says “we”…have to let that “we” into caregiving. I know how hard that is.

2. Came to believe…yes we need to believe in something bigger than us and bigger than cancer. Maybe it’s God or a Higher Power or maybe its Grace or Nature or the Ocean…just bigger than me. (just don’t make the doctor your Higher Power ☺)

3. Made a decision to turn it over…humility here..asking for help and surrender. Not giving up but surrendering that allows the universe to move and help us.

4. Made a searching and fearless inventory…what of my stuff is getting in the way? My resentment? Being a control freak? Anger I am ashamed to admit to? Don’t be afraid to name it.

5. Admitted to God, to ourselves and to another human being….this is the Support Group step. If you have felt it, said it or done it someone else has too. Reaching out to others, finding a safe place to say all of it.

6. Entirely ready to have …asking for spiritual help too. A pastor, chaplain, spiritual director, wise friend. Note: not a family member.

7. Humbly asked…again, the support group. “I don’t know what to do?” “I don’t think I can keep doing this.” “Has anyone ever had to…”

8. Willing to make amends…yes you will snap at people, gossip, bring up old crap, be mean to the person you care for, …comes with the territory. So does, “I’m sorry.” And “Bear with me.”

9. Made amends…Ditto

10. Continued to take personal inventory…in a safe place with safe people. Yes, again the support group. You don’t have time to NOT go to a support group.

11. Prayer and Meditation…yes, prayer and meditation. Every day. Even a little bit. “Please help me.” in the morning and “Thanks for getting us thru this day” at night.

12. Carry this message…even while you are in the worst of it you can help another caregiver. You can confirm their reality. You do this in waiting rooms, ICU centers and yes, in your support group.

Do these Twelve Steps click for you? Let’s keep this conversation going.

Fight Cancer or Cure It?

As in every other field, and every other endeavor, language matters. Words have power.
The rhetoric around cancer can encourage or defeat, and it can persuade and raise money or it can dash hopes.

Last week a provocative op-ed in the New York Times, titled: "We Won't Cure Cancer" provoked a lot of discussion, some anguish, and a tiny bit of relief. The writer, Jarle Breivik, is a professor of medicine at the University of Oslo in Norway.

Maybe, like me, when you see those words: "we won't cure cancer" you think, "OK, so what are we going to do about it?" And helpfully, Brevik, tells us that we are getting better with cancer and better at treating cancer, and lifespans have extended, but he explains, one of our complications is that we live longer, and cancer does correlate to aging, so the longer we live the better our chances of, yes, dying of cancer.

But the centerpiece to his provocatively titled article is that we have to get better at thinking about what "cure" means, and how to read the research proposals and which promises to cling to.

It's a conversation that matters.

So here is the link to the article in the New York Times. Read and share and yes, keep thinking:

http://nyti.ms/25lMOGo

Hidden Caregivers--Children Caring for Adults

It's so much more than, "Mommy's Little Helper." In the United States there are tens of thousands of children who are the primary caregiver for a parent or grandparent. These very young caregivers--ages 6 to 16--do more than bring a glass of water--these are children doing primary physical care for an adult. That means bathing, mobility support, feeding and medication delivery and management.

And they need help. But here's the rub: children is positions of medical/physical care can be at risk of a CPS (Child Protective Services) call which would disrupt the family. So what is a teacher, neighbor or clergy member to do?

Find safe ways to get additional help for the family---and look at this fabulous model in Florida's Palm Beach County.

Here's a link to a great article this week by Jane Brody in the New York Times.

Please do share this one with educators, social workers, faith communities. All of us who know the realities of caregiving--and being cared for--can help out.

Here is the link:
http://nyti.ms/25bgUwl

The New Anatomy of Cancer--Best New Reading on Cancer Studies

In case you missed it in your reading pile yesterday (Sunday May 15)--the New York Times Magazine published a special report on cancer: some of the new science, research, prognosis estimates, and a wonderful piece by my favorite cancer writer: Siddhartha Mukhergee.

I''m posting the link below to Mukhergee's article called, "Doctors Without Borders" about how treatments are becoming more targeted and more personal. You recall his fabulous book about cancer is, "The Emperor of All Maladies."

This special New York Times Magazine issue is filled with articles about new cancer research, new ideas about cancer's science (the science of cancer is changing) and some powerful caregiver stories too. If you have a hard copy save it for future reference or ask a friend who reads the Times weekly to save this for you.

Great reading. And reading about cancer does matter and does help. It is our cognitive life raft.

Here's the link:
http://nyti.ms/1rZJAd4

I Can See Clearly Now

“Our deepest wounds are the lens through which we see the world.”—from my journal May 1994

I sing along with the radio: “I can see clearly now, the pain is gone. I can see all obstacles in my way. All of the dark clouds have passed me by. I can see bright, bright sunshiny day.”

That is a song that brings tears to my eyes. It’s a song about recovery and healing. And it’s

been a long journey through so many kinds of healing for me. And so I am aware of how my own worries and wounds distort how I see John’s cancer and how I worry in this relationship.

Many people are afraid of cancer and many caregivers have the ongoing fear that their loved one will get sick, sicker, or die. This is not about turning a molehill into a mountain. This is not about turning a stomachache into cancer. But it is about cancer being really scary and threatening. 

But still, but even with that, how much do I lose my --and our --good life to my worries. At what point does reasonable fear become a greased slide into a truly old belief that I will be abandoned? How much do I assume that the worst things will happen because I am not enough?  How often do I set myself aside and wait for pain and grief to descend --and when they don’t I go and shake the fear tree to bring some fears so that I can have the familiar terror? Even on a good day that takes some sorting out.

This is about woundedness and beliefs. I am a woman of faith and I believe in a Higher Power but these other beliefs are something else. It’s a kind of dark belief in a lower power, and maybe this is a kind of blasphemy—but some days I wonder if I have created Gods of Woundedness that I worship and solicit even more than my God of love. Oh lord, I am so ready to relinquish that deity now. I’m ready to see clearly now and keep singing along.

The Literature of Caregiving: Me Before You

Me Before You by Jojo Moyes. Sound familiar? Yes, you’ve seen it on the bestseller list in the New York Times and your local paper. You’ll see (mostly women) reading it on the bus and subway, and at the movies you have seen the poster for the movie version coming this summer. Yes, it’s a chick flick and a romance novel, but what you may not know is…

“Me Before You” is a caregiver story. And while being a romance and yes, teary at times, it is a complex and powerful caregiver story. This novel shows the complicated layering of both family and professional caregiving.

A young woman takes a job out of necessity and becomes a professional companion to a relatively young man with quadriplegia. He is cared for in his parent’s family home and there is paid medical care, PT and other services. So we see a full surround of professional caregivers and how they interact with each other and with the family.

But despite comfortable means, and lots of help, caregiving is still a challenge because of the pain of illness and disability, and because of the human heart. Moyes shows us two people helping each other, and how hard it is to love fully and selflessly.

While readers will be caught up—and I was—in the engaging love story, we are also allowed to observe the very daily and hard, specific details of physical and emotional care demanded of the caregivers. 

This story will land in front of you soon—as book, CD or movie. Here is another full cast of caregivers making imperfect lives while loving and growing. This is the perfect book to introduce the “what if’s” of caregiving and long-term care planning to your family, friends or book club.

***

The Literature of Caregiving is a monthly series at Love in the Time of Cancer. The first installment is December 8 2014--with "Home" by Marilyn Robinson.

April is Poetry Month, and so...

“Let us remember…that in the end we go to poetry for one reason, so that we might more fully inhabit our lives and the world in which we live them, and that if we more fully inhabit these things, we might be less apt to destroy both.”

             --Christian Wiman

For this April Poetry Month I’m sharing one of my favorite poems for the Love in the Time of Cancer community:

 “What the Living Do” by Marie Howe:

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. 

                                                     --Marie Howe

***

This week I am heading to Massachusetts for Yoga Teacher Training. I'll be back home, and back here at LITTOC,  on May 1st.  Thank you always for reading this blog and inspiring me with your stories. 

When We are Well Enough to Get Cancer

"In the United States the median age at which colon cancer strikes is 69 for men and 73 for women. In Chad the average life expectancy at birthis about 50. Children who survive childbirth — and then malnutritionand diarrhea — are likely to die of pneumonia, tuberculosis, influenza,malaria, AIDS or even traffic accidents long before their cells accumulate the mutations that cause colon cancer.

In fact, cancers of any kind don’t make the top 15 causes of death in Chad — or in Somalia, the Central African Republic and other places where the average life span peaks in the low to mid-50s. Many people do die from cancer, and their numbers are multiplied by rapidly growing populations and a lack of medical care. But first come all those other threats."

Those two paragraphs are from a December article in the New York Times outlining the incidence of cancer in the developing world (deeper poverty) versus our Western communities. It suggests a mixed blazing for sure and an intriguing paradox for people with cancer:

 We lived long enough-- and well enough-- to get cancer. 

Reading the entire article is worth your time because in addition to showing what the greater health concerns are "there" versus "here" it also shows the terrible dilemma of what happens to cancer as countries are lifted out of deep poverty. As cancer arrives as the incidence of deadly infectious diseases recedes. 

The article is sobering and surprising--and a challenge to people with cancer and to those in philanthropy and international healthcare.

Here's a link to the whole article. Do take a look:

Here is the link to the New York times article by George Johnson

http://nyti.ms/1md99nY

Guest Writer--Amy Halloran--Troy, New York

This week guest blogger Amy Halloran from Troy, New York….expert on grains, breads, baking and making pancakes. In today's essay Amy shares what she's learning about relationships:

For a long time I thought that asking was the most important part of getting what I need. If I could identify and articulate what was wrong or what I lacked, then someone would fill in my blanks. If I told my husband that I needed more affection, or help keeping the kitchen clean, I assumed he would work toward fulfilling my request. 

This thinking extended to all my relationships. I need to see you more, I told my sister, and she didn't argue. She agreed. But neither of us made a dedicated plan to make that happen. So we still didn’t, and don't, see each other enough.

I stated my needs and thought my problems were solved. That’s not how things work. Well, maybe they would if I were a queen, and had a royal court to do my bidding. But here in the real world, relationships are dynamic, and require give and take, two parties discussing their ideas and feelings and trying to learn how to dance to a song that you’re writing together. This is awkward and none of us are skilled at the steps, or know the tune. Not even if we’re very familiar to each other. 

 My sister and I grew up in the same family, and my husband and I shared a vision for a life together that was so strong we pursued it like a mountain we had to climb. Given the circumstances, I should be able to communicate easily and well with these two people, and yet I am learning, always learning how to be and work together with them. As much as we share, we are very distinct. Crossing the gulf between two people, any two people, is tough. Why did I think it would be easy?

One reason perhaps is linked to shopping. Consumer culture leads us to believe that we can make a list, and the store of the world will have the goods in stock. But only so many of our problems can be answered with a dollar. 

Relationships are not transactional. While I thought I was problem solving, all I was doing was making a shopping list. 

I think it’s important to note how consumer culture shapes us, regardless of family values. I grew up in a family that was not materialistic. Forcefully so. Once, I wrote a letter to my parents stating a series of inequities I observed. They didn’t treat us four kids the same – I liked math and was good, too good at measuring things, especially love. 

My dad took me out for the day to show that I mattered big to him.  We drove around, and visited my grandfather; help him with some things around his house. Did some other errands. One of our stops was a flea market, and I thought my father would buy me the easy bake oven that I craved. But our expedition was about time together, not things.  

I was a heavy user of the real oven and had been for a long time, so my dad didn’t want to get me the pink plastic thing which would require a steady stream of silly boxes of cakes. He also was demonstrating that love was not stuff. The lesson didn’t quite take. But I understood what he was doing.

My parents’ examples couldn’t fight the impression I got from our environment, a realm that got even more of a consumer bent over the last 30 years. In America we can shop our way to better health, better spiritual lives, and of course better outfits.  All of this helped me function on a premise that I could make lists for my loved ones, as if I were shopping, and we needed more cinnamon or butter in the metaphoric house of our intersections. Then, I assumed they would give me the stuff that I wanted. This seemed reasonable, right? We were out of a supply, I noticed, so fetch it, please.

Yet was I ready to be the emotional store for the people I love as they ask for what they need? That's another series of thoughts to ponder!

There is more to connecting with others than making lists. We can’t just identify our bruised feelings and find gaps that we think people should fill with help. We need to work with other people to get what we need. Identification is just one step in the process. Have I learned this yet? No. But writing this essay is another attempt to teach myself a lesson. #

Amy Halloran is the author of:

The New Bread Basket--

How the New Crop of Grain Growers, Plant Breeders, Millers, Maltsters, Bakers, Brewers, and Local Food Activists Are Redefining Our Daily Loaf