Nurses are Your Ally

A friend’s mother has anal cancer. They begin the process. I give her the best of my experience: the notebook, the tips on chemo, the caregiver resources, the importance of nurses, how to ask a nurse a question so she can give you a straight answer. Another friend’s mother has just had her second surgery for throat cancer. She has had her larynx removed. Bad enough but then the complications begin: emergency surgery, hyperbaric chamber, feeding, bleeding. She is so ill. The siblings all live far away so the “When do I go?” begins. I share my strategies and perspective. Again, “talk to the nurses not the doctors.” Another friend talks to me about her sister-in-law’s ovarian cancer. It’s a year after surgery, chemo, chemo again, radiation and now more chemo. She talks about the nurses.

I remember the many nurses who helped me through my brothers’ illnesses and deaths. I remember the day that a nurse waited until the doctor had left the room—he had just given me a lengthy explanation of my brother Larry’s diagnosis—Anti-Trypsin Disorder—and the nurse must have seen me trying to make sense of the info and reaching for solutions. She took me by the shoulders and held me very still and said, “Your brother is very ill.” I’m sure I said “uh-huh, the doctor was just explaining that…” and she looked at me again and said, still holding my shoulders, “Your brother is very ill.” She may have said it three times before I realized that she was saying—in the only language she was legally able to use, “Your brother is dying” . It was so helpful and gave me such clarity about what I needed to do and not do going forward. He was dead in four months but the doctor had never communicated the seriousness of his condition. The nurse did and told me what I needed to make decisions and plans.

In all of the conversations about healthcare and end of life care and long-term care I think about the nurses who see up close what families struggle with and I remember how they helped me to take better care of my brothers at the end of their lives.

Gift of Desperation

I have been thinking about the good of this year. I didn’t plan on a complicated relationship and cancer, but who does? I have written so much here about what is scary, hard, worrisome and painful. But there is another side and I have to stop and remind myself of that sometimes too.

I’m not a fan of the “cancer is a gift and made my life more meaningful” school of thought. There are many other gifts I’d like and many other ways I’d prefer to find meaning. I’ll take community service and beach vistas over cancer any day but here we are.

Some of the good?

In the last 24 months I have had to get on my knees and surrender more than I ever have before—and I have surrendered more deeply. This has certainly affected my relationship with my faith and spiritual life. I began working with a spiritual director and began to study spiritual direction myself. The relationship and the bonus of living with cancer and being a caregiver with a Scarlet Letter got me back to doing intensive therapy and doing that work at a new level of intensity as well.

That willingness came from the gift of desperation.

And out of that has come new understandings of myself, my family, new ways of thinking and from that new ways of behaving. It’s a work in progress for sure but I can see the changes that I wanted for years but could not quite get to. My thinking—ever so slowly—is changing and thanks to the gift of desperation—I am getting closer to the woman I want to be.

And yes another gift has been sensuality and sexuality. because I was pushed—the gift of frustration and annoyance at the reticence to talk about cancer in the official world of Cancer Land—I started reading and writing and talking about sex and cancer, and well, you can’t do that with out doing your own home work, so now I also have a great sex life and who would ever have guessed that would be an outcome of these really tumultuous years.

What the Body Says

Yesterday even I was too aware of the constant fear and checking with myself to see if this is the whole of it. It’s not but it is too much I think. The proportions are off. There was so much good on vacation and so much good a lot of the time. One of the very good parts and the unexpected—No the American Cancer Society will still not talk of this—the sex is wonderful. I keep reading all these “sex isn’t everything and intimacy is more than sex” articles but really. We live in these “skin bags” as the Buddhists call them, and the mind body connection is real. So sex is not just of the body. Can’t have it both ways. As a dancer and athlete I know the power of what can both be stored in and accessed through the body. We can access our past, memory, emotion and self knowledge through the human body. It is that powerful. And then at the last minute we pull back and say, “Well sex isn’t all that important? Is that prudery? self-consciousness? American reticence or just another kind of fear?

I’m not immune. When I consider this relationship I think, “Too much sex?” and “Too much emphasis on sex?” Is it compensation for something else? But again I come back to the body. “The body does not lie” Jung wrote and Marion Woodman says “when in doubt ask the body.” But sometimes we need a translator for the body’s language.

Vacation Reentry

Home from vacation.

It was a week of eating well (Federal Hill in Providence RI), art (Brown and RISD Museums), books (The Providence Athenaeum, and 20-plus used bookstores across Rhode Island and Massachusetts) and yes, the beaches. Ocean smells and swells for days.

We had fun, we laughed and we talked as we drove. There is something about that side-by-side parallelism in the car that allows intimate conversations. The “what-if” talks and the “do you think…” questions.

But this is where I write about cancer and so I must admit that cancer was with us too. I noticed two brown spots on his thigh. Are they new? Had I not seen these before? There is little real estate of the flesh we don’t know of each other. Are these age spots or melanoma? This kind of thinking is a constant part of love in the time of cancer.

On the long drive we talked about later, the future and when we retire. I participate and enjoy planning the fantasy homes (beach or city or both?) but there is a parallel conversation that runs inside me: Will he be alive next year? Will he be in chemo again? Will the beautiful fabric we bought for our bedroom chairs be a painful reminder? Will I sit on that pale ocean blue and sand beige paisley alone some day remembering when we spotted it in that shop on this vacation?

Cancer in the News

Here is another soft spot or minefield for those who love in the time of cancer. While John is in-between treatments and we live in a kind of honeymoon state…no obvious signs but blood work in thirty days (tick, tick tick…) I read the papers.

This week two cancer stories:

Breast cancer research shows that even the teeniest involvement of a cancer cell in a lymph node signals high probability of recurrence. (They use the word "relapse" but that make cancer sound like an addiction and that it comes back thru the failing of the individual. We blame the victim enough already in cancer, can we not call it “relapse”?)

No John doesn’t have breast cancer but I read (worry) between the lines. He had those cells, he had lymph involvement. Cancer is cancer, right?

Next story is bad testing, errors in labs, so much cancer not caught thru medical error. Ok obvious fear trigger there.

And then he coughs and I get three for three.

Yes, all fear, worry, and my crazy head. But I know the other cancer lovers feel this. It gets us in the heart.

But good news: We are leaving for vacation tomorrow. Two city days for music, museum and food and five beach days for reading, walking, and time to quiet my fearful heart and just be together.

Oh yes, sex too. Lots and lots of vacation sex!

Marriages

Just finished the great book, “Olive Kitteridge” by Elizabeth Strout.

A great book about the heart and hope and love and pain of a really bitchy, grumpy woman. The book opens the veins I think.

In the interview with the author at the end Strout says, “A marriage is always a source of great drama for a fiction writer. It is in our most intimate relationships that we are truly revealed; that is why I write about a variety of married relationships.”

“We are revealed”, she says. Yes, that is why I like being married. Friends say to me, “You don’t have to marry him.” and others closer still say, “He has cancer; you don’t have to take that on.” They mean, “You don’t have to be a martyr.” But I am not a martyr. Strout nails it. “We are revealed.” Being married and maybe even being a caregiver is selfish. It is a lens, a way of seeing oneself.

A mirror from Wal-Mart or a self-help weekend might be the cheaper, easier way to be revealed and to see oneself. But marriage works. Even when it doesn’t.

Mastering the Art of Relationships

We went to see the movie, “Julie and Julia” today. I loved that it’s a writer story times two. Yes, Child was also a writer. It was her writing –on top of her love of food—that made her cookbook work. So I got to see two women who think they are other than they are, who, through the acts of cooking and blogging and cooking and crying become who they already were.

And, as every review has pointed out, both had men in their lives who survived the cooking and the crying and who were supportive of what may have seemed crazy or not exactly clear at the start.

As much as I want to follow Gloria Steinem’s advice and “Be the man that you want to marry”, I find that it helps enormously to have a supportive man nearby even as I become him.

And so, deeply inspired by this movie, I came home and made dinner for John from one of my favorite cookbooks, “The White Trash Cookbook” by Ernest Matthew Mickler published in 1986.

Here is the recipe. It is called “Freda’s Five-Can casserole.” Makes a great Sunday supper:

1 small can boneless chicken
1 can Cream of Mushroom soup
1 can Chicken with Rice soup
1 can Chinese noodles
1 small can evaporated milk
1 small onion minced
½ cup diced celery
½ cup sliced almonds

Mix all of that. Pour into a casserole dish. Bake uncovered one hour.
Serve with bread and butter, fruit salad and vanilla ice cream.

Another Other Woman

Yesterday I had dinner with a friend of a friend. We were introduced because we are both artists and women with management careers as well. My friend who knows I am always in that “this or that” tug of war with work said, “You should meet Mary; she has the same struggle.”

So we had dinner and I was delighted. She’s smart, funny, thoughtful and spiritual. We talked through dinner about our careers, the challenges of having two kinds of work that we love, the big step to getting studios, the building of our portfolios. She mentioned her husband, his support for her as an artist, how they talk about these career issues. I asked how long they had been married. “It will be 16 years this month,” she said.

So I asked, “How did you meet him?” And there was a long pause.
“Well", she said slowly, "when we met we were both married to other people.”

Yes, she was the other woman. It’s 16 years later and they are happy—and so are the exes. A gift this dinner. She is the counterpoint to those who say, “It never works out.”

Kids

We are onto the kids now. His sons. My daughter. They each have a place in this and each have feelings that are over the top. His sons call me names. My daughter defends her father. I talk to other parents and they all say, “Time, time, time.” “Give time time”.

I get that intellectually but I am emotionally impatient. It’s fear of course. Fear that it will always be strained, always be ugly, always be split.

Do we have enough solid ground to weather the strains of these grown children pulling from both sides? That is my real fear.

Kids, cancer, us and time. What will happen if all that collides?

Cancer Worry

There are an unlimited number of triggers for this fear. It’s August and that means John’s next blood work is 30 days away; it’s summer and I feel the false optimism of the season; we talk of planning a wedding and my mind immediately calculates the rate of colon cancer when it appears a second time –four to six months. We’d never make it to a wedding. I look at calendars and wonder. I look at plans at work and underneath all of it there is a low whisper, “Could you handle that if he has surgery and chemo again?” I think of changing jobs and I think, “Manage a new job and daily caregiving?”

It’s always there. Even though on the surface and perhaps in reality there is no cancer now, today, it’s there underneath everything I do and think and plan. What if…When…
People who have had cancer know this thinking, and caregivers live with it too.

Bag Lady

Yesterday I had lunch with a writing friend. I was telling her about work, John, money worries and I said, “I just always imagine I’ll end up a bag lady.”

She looked at me and said, “Are you saving your good bags? I always save bags from Saks just for when that day comes.”

Don't Be the Ricky

A new book called, “How Not to Act Old”, gives us a list of things to NOT do which includes not wearing flesh colored pantyhose and not leaving long voicemails on cell phones and not dangling reading glasses around your neck.

And this one: “Don’t be the Ricky.”

The author explains that every relationship has a Lucy and a Ricky. Lucy is wacky and fun and fun loving and adventurous and the Ricky is worried, controlled, chastising, cleaning up after and very grown up. At some point grown up crosses the line into being old.

Are you Lucy or Ricky? Can you do one Lucy thing today?

Making Love and Making Peace

Today is about coming to some understanding of sex and sensuality and aging. His and Mine and Ours. Wanting to have all the freedom my body demands. Also wanting to be as free as possible while simultaneously haunted by messages of Good-girl and being nice. Nice can kill sex and being good makes it hard to be bad. Talking helps. But something else is lingering underneath. Maybe it is regret. Maybe it is summer melancholy. Maybe it is desire for the impossibly perfect relationship and the impossibly perfect me.

La Traviata

Yesterday was opera day in this arts week. We saw La Traviata at Glimmerglass Opera in Cooperstown.

The perfect juxtaposition: Before going to the opera we spent the morning in Cooperstown spotting ball players and broadcasters as it was also Hall of Fame Induction Day. I’m a baseball fanatic and powerfully moved by the game but also by the people and books and history and the idea of baseball so it was such a pleasure to be pushed and shoved along the sidewalks crammed with dealers and fans and autograph hounds and collectors and scalpers and old, old ball players of whom passers by whispered, “Who is he?” and “Is he anybody?”

But then the opera. Famous and well known music, sung beautifully. It’s a heartbreaking story: A “Courtesan” or Traviata—wayward woman, struggling woman. She gives up one life for another only to sacrifice that new life for family values and a father’s peace. She is dying, she sings, he laments and they embrace and then she dies. Yes, it’s an opera: she dies singing beautifully.

I have been at many death beds and though I have not witnessed dying people singing I have seen and heard stranger things so opera works for me.

Art and Courage

This has been my arts week. New York City for museums and dance and an absolute miracle of good luck at the theater. I scored the last—the very last --ticket for the opening night of Boris Godunov –and it turned out that the very last ticket was in first row center. It was a guest or reviewer ticket and I got it. The play was wonderful, the staging stunning—being in the first row put me in the jury box for this production which turns on the audience at the end.

But the thing that really has stayed with me since coming home from New York is the courage of the artists I experienced this week. Declan Donnelan, who directed “Boris” got to take a rousing curtain call on opening night and I looked at this 55 year old man imagining the choices that he has made in the last 30 years: a career in theater, in theater that is not “popular”, to work on the edges and take creative and therefore financial and therefore personal risks. Are a curtain call and a great big review in the New York Times compensation? Does compensation even come into the equation? Does he feel courageous? Or creative? Or is that my imagining for him? My projection?

Where do we take courage in our lives? The bumper sticker advocates for daily acts of kindness. Maybe we need small acts of courage each day and kindness will take care of itself.

Web Help for Caregivers

One of the most stressful challenges for caregiving and cancer is dealing with the people who love you and the person you care for. Just updating everyone and talking to people about what is happening can be exhausting. If you have been there you know that, “Let me know what you need.” does not help. You are often so tired that you don’t think clearly or you’d say: get the dry-cleaning, make sure there is milk in the fridge, walk my dog, and let me cry. But you are too tired to be this direct and you feel uncomfortable asking for the small but actually most helpful things.

There are two free caregiving websites that offer caregivers a way to keep friends and family updated—and they are yours only not public. These sites have a calendar device so your team can see what is happening and the list of needs can be posted and assigned thru the websites. Here is the trick: If you are the primary caregiver do not be the host of the site. Pick one competent helper and you talk to them and them only. They will post the needs list and the calendar. It’s human nature but it’s often easier for someone to say “Max needs milk once a week” rather than “I need milk”. I know we are supposed to be able to ask for what we need, but hey this is CancerLand, when we leave here we can all go to therapy and assertiveness workshops in our free time.

The websites to check out are:

LotsaHelpingHands.com

SharetheCare.org

No Saints in CancerLand

Yesterday I gave a class for caregivers. The one thing I told them and that I am adamant about is this: You must never allow anyone to call you a saint.
Saint and all of its companions: selfless, good, wonderful and other praiseworthy words are traps for caregivers. Yes, we know what people mean when they say words like that but it’s a trap. If you are a caregiver and someone says, “You are a saint”, you must snap and bark and hiss and slap and say “No”. You must say “I’m no saint; in fact, I’m a real bitch sometimes.”

The danger to taking in those well-meaning words is that soon—sooner than you’d think—you start to feel like you should be good and you should be a saint and that means that the anger, the sadness, the inequity and most critically, the resentment will get pushed below the surface. When that happens you lose yourself—and in fact, become a not very good caregiver because your most creative energy is used up in keeping the truth hidden from yourself.

The best caregivers can say they are angry, resentful, hurt and –the biggie—that they wish caregiving was over. Sometimes “over” means their person gets well and sometimes “over” means their person dies. Wishing for it to be over is not unloving and it is not uncaring; it’s just a real, honest feeling for a human being stressed to the max.

For years I cared for my brothers. One was dying of ALS and one was dying of Anti-Trypsin Disorder. Two horrible diseases. Some people in my life said all the “saint” “good” and “wonderful” words. I survived because I had two people who could hear my truth. I had one person to whom-- when my brothers care was especially hard—I could say, “If he doesn’t die soon I’m gonna kill him.” That friend also knew that I cried myself to and from Pittsburgh every weekend and who knew the devastation of losing my big brothers. But my sanity was saved by being able to say the truth of the moment in the moment.

If you are a caregiver you must find someone like that in your life or online. A place you can say, “I am no saint”. and “This sucks.”

Cancer Caregiver Redux

A year later and I am walloped by unexpected resentment. I am remembering last July and how everyday was exhausting from taking care of him, all the household needs and work. He was lost in a fog of chemo and exhaustion. I had no partner and no comfort. But people all around me were praising me and saying wonderful things and I bought in.

I realized this week that I was making a deal and I didn’t even know I was doing it. I thought this summer would be mine; that he would be so appreciative that he’d say “Hey honey, this is your summer, lets make this one good for you.” Wrong. Surprise. The unspoken deals and even the unconscious deal I had made within myself. This summer is hard too and no one is giving me roses or a break.

Time to grow up: No one is going to take care of me but me. Makes me sad and the resentment is there, but better to face this than live is a pond of resentful expectation.

Jealousy and the Other Woman

“The girl wants the mother and feels shame with her jealousy for wanting the mother. The father is the fulcrum in the triangle of the girl reaching for her mother.”

--from The Mermaid and the Minotaur

I found this in a file dated 1996. I was struggling with jealousy in some relationship then and trying to understand it. What is striking about this idea is that it explains something I have felt and been unable to articulate and that is the complexity of jealousy for women. Women’s jealousy about another woman gets confusing because there is an element of desire for the other woman even as we wish to kick her out. A woman not only wants her man to give up or quit the other woman but she also wants the other woman. This explains how anger gets misdirected in infidelity and affairs. It explains the obsession with “her”. There is a taboo being activated and some dark homoerotic lust/revulsion pushing up from down deep in the archetypes.

I have felt this before and I have been the object of this quality coming from other women’s jealousy toward me. I have certainly felt this confusion about John’s ex-wife, and I have been ashamed of these feelings in myself.

We are not simple creatures and so it means we must—and I must—be gentle and self-forgiving.

Taking a Risk

The past week has been good. Travels and reading and art. And fear. Fears rise up again and push me and pull me. It is cancer and death and money and other women and the story in my imagination always has the same ending: I am alone. Years of therapy have taught me that I come by this fear honestly. There were huge and horrible abandonments in my early life. But while I can chronicle them they have left scars and bad emotional habits. One is scaring myself to death on a regular basis.

But this week something new. Risk taking by going toward John and not away from him. Risk taking by going toward intimacy rather than girding myself from it. Risk taking by letting him in—bit by bit—on the fears and fantasies that make being me a daily challenge.

I have a new idea. This vulnerability-and it is that—is not a concession of weakness or something I give over to him, but a strength in me and an acceptance of the woman I am who has survived so much and who still wants to give and receive love.