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

Let Go and Grow

Beautiful Swimmers by William Warner is one of my very favorite books. It is the story of the watermen who live and work on the Eastern Shore of Maryland, and it is also the story

of their counterpart, the blue crab.

It’s all there in Beautiful Swimmers: how the crab lives, feeds, courts, mates, dies and yes, is eaten. And Warner shows us how the waterman trains, dresses, plans, thinks, prays, eats, and yes, dies. These two --the crabs and the watermen-- are wonderfully and positively co-dependent.  

I learned two of my favorite words in this beautiful book: First, autotomy is the remarkable crustacean attribute of dropping a limb, allowing a pincher or leg to fall away as a means of exiting a battle or a threatening situation.

Then, autogeny, which is the related, and accompanying attribute referring to a crab’s ability to grow a new limb to replace the one sacrificed for survival.

I could not, not the first time I read this, or now, years later, miss the comparison to humans. Wouldn’t it be wonderful to know when to drop something or someone and just walk away? And, yes to also be able to naturally grow that part of one’s self again, to make a choice, and to become new.

The Glorious Debris

“Every one of us

 is called upon, probably many

 times, to start a new life. 

A frightening diagnosis, a

marriage, a move, loss of a job…

And onward full tilt we go,

pitched and wrecked and absurdly

resolute, driven in spite of 

everything to make good on a 

new shore. To be hopeful, to

embrace one possibility after

another—that surely is the basic

instinct…..Crying out: High tide!

Time to move out into the

glorious debris. Time to take 

this life for what it is.”

          --Barbara Kingsolver, from High Tide in Tucson

Is Your Cancer Luck or Legacy?

You know how this goes. You tell someone you have received a cancer diagnosis and either directly or indirectly they start to probe: “Is there any other (your brand of) cancer in your family?”

We know that is often a self-comforting question: if there is cancer in your family, and you have this scary diagnosis, then maybe they can (falsely) feel a tad safer. That is, while insensitive, sort of understandable.

But it’s a different matter when your oncologist is asking the same question. Because they know some stuff that you don’t. You might bee thinking, “Hey, my granddad had colon cancer so this breast lump surely can’t be a big deal. Or the reverse, “Sure, we’ve had some melanoma scares over the years so I don’t have to worry about lung cancer.”

Or—and this is hardest—you have cancer so you think (in a magical thinking kind of way) “At least this means my kids won’t get cancer.” As if you are taking one for the team.

Or maybe you shove all of those thoughts far away and you don’t talk or think about cancer in your family tree.

But you might want to. 

A new book by Theodora Ross, M.D., Ph.D. called, A Cancer in the Family will help you learn about your genetic inheritance, and the ways that cancer moves through families. 

Ross’s very smart and very readable book gives facts and figures, yes, but it also gives you language with which to think about cancer’s patterns, causes, systems and statistics, and the when and what of genetic testing.

The foreword to “A Cancer in the Family” was written by the best cancer writer ever: Siddhartha Mukherjee, M.D., Ph.D., author of The Emperor of All Maladies. Of Ross’s book Mukherjee writes: 

“Confronting a family history of cancer and thinking about the nuts and bolts of genetics can feel overwhelming. Ultimately, though, the knowledge you gain from this book is empowering. It can save your life, and he lives of the people you love most.”

The Undiscovered Country of Illness

Francine Prose calls this sentence of 181 words, written by Virginia Woolf: “one of the most complex and virtuosic sentences in all of literature:

 "Considering how common illness is, how tremendous the spiritual change that it brings, how astonishing, when the lights of health go down, the undiscovered countries that are

then disclosed, what wastes and deserts of the soul a slight attack of influenza brings to view, what precipices and lawns sprinkled with bright flowers a little rise in temperature reveals, what ancient and obdurate oaks are uprooted in us by the act of sickness, how we go down into the pit of death and feel the waters of annihilation close above our heads and wake thinking to find ourselves in the presence of angels and the harpers when we have a tooth out and come to the surface in the dentist’s arm-chair and confuse his “Rinse the mouth-rinse the mouth” with the greeting of the Deity stooping from the floor of Heaven to welcome us—when we think of this, as we are so frequently forced to think of it, it becomes strange indeed that illness has not taken its place with love and battle and jealousy among the prime themes of literature.

--from Virginia Woolf in "On Being Ill”

Spring Will Come

Today we did a three-mile walk with hills. We were huffing and puffing but moving at a pretty good pace. As we made the turn to come back home I said to John, “Do you remember that summer after your first surgery; you could not walk from our front door to the car.” And he remembered.

It’s a shock still, how that cutting into flesh and being sewn back together took away so much strength so fast. He looked the same but could not walk at all.

Now we hike and do hills and we push each other on.

That summer of chemo changed so many things. No movies, no malls, no grocery stores. Even a tiny bit of air-conditioned air caused excruciating pain and frozen breath. He couldn’t even look in the refrigerator so I had to learn to cook. That was one of the gifts of Cancer Land—I became a cook. But that summer when it all began was so shocking and crazy. 

I think about this today as we hike and run and dress for a dinner out. So many things changed. We grew from them and with them. I know that isn’t everyone’s path. Cancer can end a relationship as well. It can be too much. And no one gets blamed for that. It can just be too dam hard sometimes. So what I feel tonight is gratitude and grace.

The Literature of Caregiving: Tom Lubbock & Marion Coutts

It is not often that we have both patient and caregiver as extraordinary writers. And while

often sad and hard stories we learn so much by being able to see both sides of a cancer story. Even a story unto death.

This month I read a pair of memoirs that give us this perspective and some new language and eyes into a cancer patient and cancer caregiver with books by Tom Lubbock who was Chief Art Critic for London’s Independent newspaper. Tom was diagnosed with brain cancer in 2008 and died in 2011. His book, the chronicle of those three years until days before he died, is “Until Further Notice, I am Alive.”

His wife, the artist and writer, Marion Coutts, wrote her book, “The Iceberg” through and after that same time period. Hers is the parallel story of the diagnosis, surgeries, hospitalizations and, for both of them, the heartbreaking complication of raising their baby son, Eugene.

What many of us who love words, reading, books, arguing our point is the injustice and indignity of Tom’s particular cancer which was situated in the language center of his brain. The wonder and strange thrill of his book is reading him as he articulates what language means and what it means when a writer is losing language. You would think: morbid. But no.

These books are each slim and carefully crafted. These two are such fine writers so I encourage you to buy and read both, side by side. See how each one describes the same day. What does it look like to him? To her? How they see the world includes what they see, even how they see death.

From Marion: “A palliative nurse came to see us at home in the autumn of 2010. She said,

‘On a scale of one to seven, how would you rate your quality of life?’ There was a long pause while we digested this madness. Tom, slightly absent, lightly bored, said thoughtfully, ‘That’s a ridiculous question. Obviously we go—“Oh God” all the time, at all the stuff to be done. But generally it is wonderful. We are interested.”

From Tom: “Mortal. We occupy a limited patch of space for a limited patch of time. Like the art of realistic paintings: pictures hold an equivalent in the confined areas which they enframe, and the brief narratives they represent…We know the deal. We’re bodies. We are not in our own hands."

Marion’s life continues. Tom’s life does not. But these books do. And what they “enframe” for us is wisdom, self-compassion and love.

What We Don't Talk about When We Talk about Aging

Those of us who work in caregiving or aging services or healthcare do a lot of talking. We talk about medication and money and housing and hospitals; we talk about caregiving and caregivers and schedules and finances. But the thing we don’t talk about enough is talking.

We rarely talk about how critical talking is in tackling the issue of aging with dignity. Of course we say the words; we say that seniors or people with chronic illnesses must talk to their families, and we offer brochures that tell people what to tell their kids and what

children should ask parents. We remind caregivers to speak up and ask for what they need.  But then we quickly move on to other topics because, we too, are uncomfortable with talking.

Many of us have suggested that families use holiday gatherings to start the conversations about things like living wills and how they want to live later.  But we forget to mention how many times you have to try to have that conversation before it “takes.”

Talking is where those of us who work with an aging or ill population fail. Despite the many fall prevention workshops, we who work in aging are falling down on the job because we are just not talking enough about talking.

What I am talking about is talking about feelings---messy and uncomfortable feelings. The realm of emotions is gray and most of us prefer black and white. We’d rather talk about aging protocols and best practices and we can get very worked up about Medicaid and nursing homes, but we regularly avoid the one thing that will make the biggest difference in the dignity of someone’s life: Talking and listening and then talking some more.

“Aging in Place” is the buzzword. At a recent workshop I listened to a panel discuss the services available, the options for money and housing and caregiving help. But the sad truth is that none of those strategies are viable unless spouses and parents and children are talking about this hard stuff frankly, directly, and repeatedly.

The bottom-line of aging in place is this: You must talk to the point—and well past the point—of being rude, boring and annoying. And that is not easy for a family member to do unless staff and coaches and navigators back them every step-- and every word-- of the way. 

Denial, as they say in Twelve-step recovery, is not a river in Egypt. It is the central issue in illness and aging. We’re Americans; denial about aging and death is built into us. We need to be frank about this: The only healthcare fact you need to know and that all research confirms is this: You will age; you will then become less able and then you will die.  Given that, who do you need to talk to?

These conversations are not easy or comfortable, but if you want to have a say on the last years of your life then start talking about that now. There is no time for family planning in the middle of a crisis. 

Here is what I learned from years of being a family care giver: You think you’ll get some kind of warning; you think aging will happen gradually kind of like the way your hair goes gray, a little at a time.

But no. It’s very fast. One phone call, one bit of blood, one screech of the tires, one slow motion slide as your foot goes the wrong way on a scatter rug. Your life-- and the life of every family member around you-- is rapidly and drastically rearranged. Yep, you meant to talk about healthcare proxies and end of life measures and where you would like to live if you ever got disabled. But…

  

The family chat must happen long before you meet your discharge planner—and since we don’t know when that is going to be: You have to talk now. Discharge planners are amazing professionals. Their job is hard logistically and emotionally, but they can’t facilitate the conversations that we should all be having now with our family and our friends.   

Those of us who work in healthcare and human services are at fault too. We keep talking about making houses aging-friendly and “patient navigation”. But no one will ever get the benefit of those if they don’t first talk and talk and talk to their family. 

Shame on us for not insisting that every person with a serious diagnosis have those talks.  Anyone who works in healthcare and human services should be saying, “Did you talk to your kids?” when they get a call from a senior, and “Have you sat down with your parents?” every time we get a call from an adult child asking about services. And we should not accept excuses like, “I can’t talk to my parents about their money.” Yes, you can or you’ll be talking about it with a complete stranger in the cramped office of the nursing home you didn’t pick, and don’t like. 

One more big thing we need to say is, “Never say never.” At some point a family member will be your caregiver.  Start talking now about who that might be and how you can make this work best for them. If you are lucky and you plan ahead you can have a say in this, otherwise no. Don’t waste time joking or disagreeing. Who will it be? 

If you had to choose which of your children you’d prefer to live with be sure to talk about that now while everyone is calm and has time to think about it and then come back and talk some more. Married children need to talk to their spouses and their kids and even their in-laws.  It can take several conversations to get through all those layers.  If there are siblings there will be sibling issues. They don’t go away because we get older. And even the best families have to tread this tricky terrain.

At the end of the day—or the end of your life --the issue is not nursing homes or retirement communities—but what you didn’t talk about. And that is where dignity will live or die.

It’s not the ramps and rails that will derail a family; it is the emotional issues we would-- literally --rather die than talk about.