Brown Ribbons

A friend is walking for breast cancer. Major League baseball has pink baseball bats. Everyone has sold out or bought in. How did breast cancer get so pink and how did it get so untouchable. Breast cancer advocates have tits that no one can touch.

What happened to feminists who wouldn’t think of dressing their baby girls in pink? Now a woman can hardly buy any product that doesn’t come in pink with that dam breast cancer ribbon logo. Ohhhh breast cancer. I know, but really.

Breast cancer isn’t the leading killer of women. Heart disease is. Breast cancer isn’t even the leading cancer for women. Lung cancer is. Breast cancer isn’t even the medically scariest cancer for women. Ovarian cancer—silent and fatal—is.

So why all the pink ribbons? Is it about the breasts? Playboy? Motherhood? Tit power? Somehow breast cancer became the leading product in American marketing. All you need to say is that one penny of the price of anything goes to breast cancer research or education or to the design of yet another unnecessary product and it’s done. Here’s a new slogan: “Breast cancer: You can’t touch that”.

But then there is colon cancer. Also silent, deadly, a fast growing, killing cancer with wicked, chemo-scary treatments and life changing surgery. Women die of colon cancer too and believe me; colon cancer will change your life much more than breast cancer. So where are the fund raisers? Celebrity endorsements? Where is the “Walk your Butt off for Colon Cancer” walk-a-thons? Where is the bumper sticker that says “Don’t be an Ass, get a Colonoscopy”? Where is the tee shirt that says “No Shit: I survived Colon Cancer”?

Where are the brown ribbons?

Sick and Tired

John’s fatigue increases. We were told that the recovery time between each chemo session would become shorter but until now he has been OK during the chemo days then day three is tired, day four more tired then a slow recovery back to almost normal. But this time I see the difference and I hear in him some annoyance that he is not rebounding the same way. A few weeks ago the physicians assistant at the oncology center explained that fatigue will be cumulative and gradually it would lap itself until tired is tired all the time. That seemed far away until this time. Now he sleeps later, sits longer, naps more. He does errands and chores each day but they seem more significant now, taking more energy.

John met with a nutritionist who prescribed a regimen of organic foods, no preservatives, some supplements and a changed proportion of protein to carbs. It’s a lot like the South Beach diet: always eat protein when you are eating any carbs. I understood right away: it’s about stabilizing blood sugar and keeping metabolism on an even keel. Makes sense though not easy to do when nothing tastes good and all food preparation is a chore. Baby steps I say to him. We’ll buy more organic, try some of the stores she recommends, and balance more protein into our diet. This will be good for me too.

I’m becoming aware of the energy needs I am going to require as this progresses. I am working fulltime, writing as much as I can and trying to keep up with chores, healthcare and exercise of my own and keep a life. That feels important. How do I keep a life of my own? How do I take care of him and take care of me? This is where it gets very easy to feel sorry for myself and to want to be cared for. I need to collapse into something. Is that something God? I hear my friend Brigid saying, “Pray as if there is a God but live as if there is not.”

Safety

I don’t feel safe in the world. Can I find a way to feel safe in the world that is not dependent on John or on my ex-husband? Is that the God choice? Part of me knows that’s the answer but it makes me mad. I want to be safe and I want to be taken care of. Right now I am the caregiver but I want to say “No, you take care of me; somebody come right now and take care of me.”

Is this what faith is? I am unsettled and un-tethered. How do I get tethered again? And to what? It makes me mad because I know even as I ask that the truest answer is that safety is not in a person and it is not in a state but that I have to find safety in the unsettled that I have to come to be safe and OK in the very turmoil then I am really safe. I know this is the truth but I don’t want it to be.

God, please find me. I can’t find you right now and I can’t feel ground under my feet.

Donald Hall and Jane Kenyon

I am reading the book, “The Best day/The Worst day” by Donald Hall. It is the story of the last year of Jane Kenyon’s life, her death from leukemia and also the story of their relationship and a marriage of two writers. It’s beautiful.

I am interested in writer’s lives and especially in how two writers lived together doing their work, making a life as freelance writers and teachers. But I am reading this because I have also known since attending Bennington that Donald’s story is also the story of losing Jane and grieving her. My first year at Bennington was the year after Jane’s death and Donald’s readings that year were of his poems/letters to Jane after her death. He was a grieving man.

I know that I am reading this book to look into the face of grief and death and losing a beloved. I realized that I am reading the book backwards. I started at the back with the postscript because I wanted to see right away what he said about her death. The postscript is Donald writing ten years after Jane’s death. So he has survived. Ok, he survived. That’s both a hope and a fear.

I read the Postscript over and over. Life after Jane dies. It is startling and sad and clear. I am doing something with this reading. Or trying to. Some self-inoculation? Some kind of research? Asking, “How bad is the pain going to be?”

Donald Hall cared for Jane for 15 months: chemo, bone marrow transplant, all the horrible side effects-some are familiar to me now: weakness and sore mouth and hair on the pillow and on the sink. Hall describes the process and real feelings of loving someone who is very sick and then dying. I can feel the howl when they are told leukemia is back and there is nothing more to do. Jane dies eleven days later. Hall is loving her so much but is clear about not trying to make her death harder by loving in a way that makes it harder for her to let go. The love in that!

In reading this book and reading it backwards from after death to dying to illness to symptoms to their life in New Hampshire and making their poems I am really staring at Donald Hall’s survival and I rail at that. That is it. I am afraid of John’s death but also I am afraid of my survival.

But I also make this note to myself: one of the reasons that Jane’s death is such a shock to Hall and Kenyon and feels so unfair is that Hall is 19 years older and he had colon cancer that metastasized to his liver years before. They had already been thru colon surgery, chemo, cancer recurring—all his. And the she gets leukemia and dies in a year!

Genuine Love

A major characteristic of genuine love is that the distinction between oneself and the other is always maintained and preserved. The genuine lover always perceives the beloved as someone who has a totally separate identity. Moreover the genuine lover always respects and even encourages this separateness and the unique individuality of the beloved. Failure to perceive and respect this separateness is exceedingly common however and the cause of much suffering.

--M. Scott Peck, MD

His Wife Calls

And calls, and calls and calls. Day and night. The beep of his cell phone is a constant sound marking a rhythm alongside the Infusion pump. She is angry and scared and sad. A friend says to me “have compassion” not knowing how deep my grief and regret for her runs. I know the hip jargon of self-help. I didn’t hurt her etc etc. But I did. This woman is living through my worst nightmare: the man I love has left me; the life I counted on is gone. And she too has the double-whammy of losing him and then losing him. Divorce and cancer. I pray for her every day.

He turns off the phone and she texts. The phones bounces around the coffee table—her anger making it dance from one end to the other. I feel scared of this bouncing phone too. Will it be too much for him? The guilt and knowing that he caused this pain to someone he loves? Here we are in this new life—a relationship, cancer, divorce, integrating our social lives, family lives, financial lives and she is out there disbelieving, furious, stricken.

Part of the fear I feel when that phone beeps and bounces is that I know I am also looking in a mirror. This is what happens to a woman who makes a man her whole life. This is the nightmare of a woman who becomes so dependent on a man. He left the room and now there is no one there. I have this choice to make too.

The Other Side of Anger

Someone very perceptive pointed out that I might be experiencing some anger. Hmmmm. Yep. Anger. Definitely. I make no apologies for being angry at this derailment of the love train. The fantasy has crashed and the reality was switched in the night while these two passengers were sleeping. Instead of planning where to live and the trips we’ll take and what retirement someday might be like, we are instead in love in the time of cancer.

When I sit still the other side of the anger is right there. That is all the love and desire and lust. There is still amazing sex which surprises both of us—we are in our fifties and not newcomers—there are many “Oh my God’s” the next morning. Is this a side effect of chemo no one talks about? Is this the psychological impact of cancer? Having death sitting right on the bedpost? As an artist I know that libido takes many forms and it is always insisting on life. We commonly think of libido in terms of sex but sex is also an insistence on life and on living.

There are the other things that sit along side this grand waiting game of cancer. There are the golf clubs I want to buy and the concerts we’d like to subscribe to, the trip to the beach we talk about for next summer. But everything has an “if” and “maybe” and “if we can” factor. Will we play golf or will I? Will we get to go to concerts if we buy a series of six?

I worry about how to plan my fall schedule. Do I take the fellowship I am offered? That means going away from home for weeks. Do I take a class and work toward the graduate degree I want to have for later? I say to myself and to my journal “Invest now in your later.” Sometimes that later means when his cancer is over and his life is busy again and you’ll want to not have lost your life. Sometimes that later means when I am alone because he has lost his.

Colon Chemo

As of this afternoon John has completed his fourth round of chemotherapy. This means he is one-third of the way through this process.

His colon cancer chemotherapy protocol goes like this: One round is composed of Day one at the oncology center where he receives two drugs over three hours. Then for the next 48 hours John wears the mobile chemo pump for continuous infusion of 5-FU, the third chemo drug. 5-FU is the nasty one with the most side effects. The pump has taken on its own life in our home; we have even affectionately named it FU. It is kind of like a small pet in that it requires tending—and sometimes fussing --and it makes itself presence known with a regular hum and beep.

Resentment

In AA they say that resentment is like giving someone rent free space in your head. They also say that resentment is like setting yourself on fire and hoping the other person dies of smoke inhalation.

In Cancerland resentment is rarely spoken of publicly. Caregivers are saints and people with cancer are noble and heroic. But really, isn’t everybody pissed? I am. The only reason I know that I have to admit this is that years ago when I was taking care of my dying brothers I had so much resentment and then so much shame for feeling that resentment. My brother Larry was so difficult. Just a total pain in the ass patient. Some days I’d call my friend Brigid—the only person I could admit my secret “bad” feelings to --and I’d say “If he doesn’t die soon I’m gonna kill him.” Then I would sob all the way home I was so heartbroken that my big brother was in fact going to die soon.

Today I tell that story to other caregivers to give them permission to be resentful and to be pissed. It's part of caregiving but rarely spoken off in its full force. Again, in the way cancer folks call sex cuddling; they talk about resentment as “at times you’ll feel angry”. Nope, at times you will feel hate and really, really pissed.

Don’t make it worse by feeling bad that you feel so bad.

You Could Get Diabetes From Cancer

You could get diabetes from being around the people who are around the people with cancer. Enough nice already. Nice is dissociative. Nice is distancing. Nice is disrespectful of the reality of what difficulty people with cancer are facing. Nice becomes condescending in two breaths. Skip the Waverly fabrics and give me exposed brick and straight talk. Skip the euphemisms. At The Amy Winehouse House we have former Marine drill instructors as our support group facilitators. They do not say, “How are you feeling today?”. Our guys say, “Hey, Get the F up and deal with it.. This is the place to learn to roll your own”. And in our program for kids: We give them a real opportunity to be helpful. We ask teenagers to come help the people with cancer learn to roll a joint with one hand so they can do it during chemo.

Babar and FU

Most people meet Babar, the French elephant from the children’s books when they are young, but I didn’t meet him till I was much older. My introduction was a gift from a friend when I was going through a bad time. I keep a picture of him on my desk, and especially now, I stop to say, “Thanks, Babar” for his message.

Babar is a survivor. In the first few pages of his story we witness the murder of his mother. It is cruel and sad. But Babar moves from the country to the city where he meets the Old Lady who becomes his mentor. With her guidance he learns to dress well—he’s French after all—in green suit and spats, and he acquires the skill of conversation in the Paris salons. But most importantly Babar moves beyond simply surviving to use his past to become an individual with deep values and strong character.

Babar is a leader. He marries Celeste and has a family. His leads his country, Celesteville and it is a community rich with diversity. The only really bad time comes when Celesteville is burned and Babar had the bad dream. In his dream demons came—hairy winged things named hate, fear, greed. But Babar summoned the spirits of patience and hope and chased the demons out of the country and peace was restored.

Babar is completely comfortable with himself; that’s what recommends him the most. Though he certain of his authority, and wears a crown to prove it, he is not heavy handed nor a workaholic. Babar seems to have the faith to really live one day at a time. (Did he go to therapy? Elephants Anonymous? de Brunhoff doesn’t say.)

Babar inspires. He is honest, he negotiates change, he’s committed to family and country and he sends this overriding message: “Don’t panic”.

I have a Babar. When John and I began living together I gently encouraged their relationship. Babar has traveled with us and he sometimes watches TV. Now that Babar has come to understand John's cancer he sometimes reads poetry and just last week he was sitting on our bed with his trunk in a copy of Susan Sontag’s “Illness as Metaphor.”

Today after John’s Chemo session we came home for the second stage which is wearing the infusion pump with 5-FU—the really wicked chemo agent. John has to wear this pump for two days. I noticed that Babar was a tad anxious. He doesn’t like chemo days either. So today I made Babar his own little infusion pump that he can wear just like John. I made it from a box of wooden matches covered in black paper and it has a strap made of an Hermes store ribbon. (He’s French after all) Now Babar is sitting on the couch with John. Both wearing their chemo pumps with straps jauntily crossing their chests. John has his nose in a book. Babar has his trunk in the air.

Marrying Cancer

This morning I told him that I want to be married to him. We are both in the midst of divorces and my great fear is that there won’t be time. I am racing against New York State and the cancer clock. What if there isn’t time? If he dies and we are not married does it mean I will be the Other Woman for the rest of my life? Does it mean that what I have been with him is never valid? Never real? It is real to me of course. I believe it is to him too and I shouldn’t care what other people think. But I do. I do.

Far Down The Road

Yesterday at the end of a meeting a woman I know through business asks if she can speak with me as we walk to our cars. Somehow I know right away what she needs to say. She asks me, “Was John in your life before you separated from your husband?” She is having an affair.

What has been a source of shame for me becomes valuable to someone else. She is suffering. She is afraid and confused. It’s a very lonely place to be. I talk with her for an hour. I tell her the process and the stages of our relationship. I tell her about my struggle and the to and fro. I tell her about breaking up, going away and coming back. I tell her how I prayed and wrote and prayed some more. I tell her all the ways I felt and the thoughts and feelings and grief of the year before we “came out”. I suggest ways to discern what is right for her. I have no idea what that is. She asks me if I am happy now. I say yes. She asks me if I love my husband and again I say yes. She asks if I had doubts when I heard about the cancer and I tell her that truth too. Yes, of course.

In Alcoholics Anonymous one of The Promises is this:

“No matter how far don the road we go we will see how our experience can benefit others.”

It has been and is a bumpy, painful road. I’m grateful that something of this pain can benefit another.

My Hip Hurts

My hip hurts and it hurts bad. It’s not cancer. That’s the first thing that always goes through my head. In the triage of physical “issues” I always come up short. I don’t know if this is sciatica or a torn muscle or a pulled hamstring but I know that it hurts --and I know it is not cancer. But does that cancel it out? Am I allowed to have illness/injury/discomfort/pain? Do I get to whine? Complain? Worry? Get medical help? My hurting hip is not cancer and not fatal but it’s mine, and it hurts bad.

Vacation Days

We went to Baltimore last week. Time to meet more of my friends and to see the town where I lived many years. A chance to also have a real vacation. A city of good climate and lots of water, crabs and art and the Inner Harbor. We stayed with friends, ate a lot, visited new restaurants and art museums, talked about art and music and books and argued about the process of intellectual focus and how insight occurs. The timing was chosen carefully. We left three days after chemo so John had some energy again. I warned our hosts that we’d move more slowly than usual. We planned the itinerary so he could nap and read. It worked well. I had time to play and shop and talk privately with my friends. One morning I got up early and went to an AA meeting with our host. I was invited to speak and I talked about gratitude and how extravagant the Promises really are.

John and I took a whole day to ourselves and covered the Inner Harbor. We ate mussels at Bertha’s, looked at the locations and sets for Homicide and The Wire, took water taxis back and forth to see the city from the water and to see Fort McHenry and Federal Hill. We toured the exhibits at the Museum of Visionary Art and ate ice cream resting our feet and people watching at the Light Street pavilion. The next day we shopped in Hamden and looked at antiques and sampled sweets in a store that sells shoes and chocolate. Then we went to see the Orioles at Camden Yards Ball Park. The Orioles won. I danced and laughed at the seventh inning stretch. There were fireworks after the game and we sat to ohh and ahhh. The trudged back to the light rail to ride home. Our last day we had breakfast of homemade yogurt and fruit and coffee at Carma’s Café near Hopkins and then went to the Baltimore Museum of Art and looked at the Cone sisters collection and wondered about the balancing of form and content and how important is or isn’t to know the context and history in evaluating a work of art.

A last Baltimore treat of French fries and bread pudding-- and a handsome waiter in Bermudas and cowboy boots --at Donna’s on Charles Street then onto the airport.

It was vacation and relaxing and stimulating and filled with friends and memories and seeing Baltimore through his eyes. He met some of the most important people in my life and they met the “new man” in mine. It seemed so normal and was so much fun.

Josephine's Cross

Looking for a necklace today I found, in the bottom of my jewelry box, an old cross that had belonged to my grandmother. Thin, worn, maybe two kinds of gold with a dark intricate Jesus on the cross. It’s a crucifix.

For years this cross was in a small old fashioned change purse that my mother had saved from her mother's things. I was told as a kid that this small change purse with its cross, old coins, a broken trunk from a china elephant and other small trinkets were what my grandmother Josephine took with her to poker games. She was a gambler. She supported her family playing cards.

What I realized today when I lifted it from the jewelry box was that it made no sense for this grandmother to have a crucifix. She was German, and from a Jewish family at some point. But even in America she was part of a Protestant Church. So why a crucifix? Because she was a gambler. She bet the odds, took chances, risked it all, dared and often won the pot.

I never met Josephine. She died when my mother was 19 years old. But a psychic once told me that Josephine was my guardian that she was looking out for me. I want that to be true now. I need Josephine’s energy and spirit and most of all her survival skills. A German Jew playing poker, rolling cigars, bringing home money to her family and holding tight to a small satin coin bag with a crucifix --just in case. I need Josephine now just in case.

The First Casserole

The first casserole has arrived. I had been told that this would happen. I had been warned that this would happen. Just last week in a pissy, “Why don’t people realize this is hard on me too” mood, I had spit, “So when do the fucking casseroles start arriving?”

And here it is. Spinach lasagna. A huge pan. A tray to feed 12. Vegetarian. Home-made tomato sauce. The amazement is the “who”. The woman who dropped off this huge tray of beautiful lasagna is a woman I don't know well. She is a professional colleague. We have had coffee maybe twice. But a month ago I told her about John and the cancer. She “got it” immediately. She told me of caring for her father for the 18 months that he was dying of brain cancer. She spoke frankly and directly about the pain of caring for him. She told me about juggling work, a new job, a new baby and taking her Dad to doctors and hospitals. Not knowing day from night. She also told me her regrets: that she wished she had not worried about work so much, that she had taken a leave sooner, that she had told more people what was happening—and let them help her.

To me the testimony of her “getting it” was that the amazing lasagna came in a foil (disposable) pan and with instructions on how to heat, serve and even freeze parts for later meals. She knows that having to wash and return a pan is just the thing that can reduce a caregiver to hysterical sobbing.

There are many gifts in this gift of lasagna. Knowing that someone gets it on this level. And you just never know who it will be. One’s closest friend maybe in the dark. A stranger can grasp it and respond with love in just one day.

Fashion Tips for Caregivers at Chemo

Today is chemo day. What to wear? There is no dress code but think again. My choice this week: Khakis, (it’s Friday) black linen shirt jacket over black cami (layers are good) black ballet flats (signal a causal insouciance) and my new necklace—black pearls inserted among silver waves. This is the gift from John: subtle, stylish and very me.

Hospitals, doctor’s offices and yes, at Chemo. Looking good makes a difference. Leave the sweat pants and polyester at home. Go for neutrals, polish and natural fibers. (There are enough chemicals in this cancer life for everyone.)

Diana Vreeland, legendary editor of Vogue wrote, “The one presenting the most style has the most power.”

In this powerless situation, style is a consolation.

Losing It

Today in bed the physical intimacy cracks me open. Giving pleasure, daring to go further, observing his pleasure and then I lose it. I am crying. Cracked open. How long can we have this? All of the pain f flows through me: for him, for myself and for the others affected by this relationship.

I look at his face. I look at his too-bushy eyebrows and I think, “they look so normal, not so wild.” Until I realize what I am seeing and what it means: He is losing his hair.

Possessed

And those who had seen it told how he who had
been possessed with demons was healed.

--Luke 8.36