An End and a Beginning

In my family New Year’s Eve was always a special occasion and wrought with meaning especially for my mother. Every year she would tell us, “Where you are when the bells ring on New Year’s Eve is where you will be for the rest of the year.” As a kid this meant that our house had to be clean, that we had baths and new pajamas, if there was homework or projects they had to be completed, and everything in our house was in perfect order.

Of course, in those years no one paid attention to the things that were slightly out of place like the growing tension between my parents or my mother’s addiction to Dexedrine. There was no thought to putting intra-personal or interpersonal order in our lives.

For years I carried forward this tradition making sure my house was clean, laundry done, hair and nails and toes perfected. I even chose my new years eve activities to meet the law of “when the bells ring”, one sad year locking myself in my room at the stroke of midnight to symbolize to myself that I would indeed end a painful relationship in the coming months. Another year I made sure I was sitting at my desk at 12:01 to ensure a year of commitment to writing.

Today as I prepare for this evening and the change to a new year I have a new take on my mother’s teaching. I will not do laundry and not clean the kitchen. I will leave the to-do list undone and I’ll enjoy John as we relax and make love by the lights of our tottering Christmas tree one more night.

My hope for myself when the bells ring tonight is that I am imperfect, undone and incomplete and that I will accept myself as a work in progress rather than a woman frozen in time. When the stroke of midnight comes I hope to be relaxed, laughing and pleased with John and with myself and that is what I hope will carry over into 2010.

Breast Bumps

When I was a girl my mother would say to be very careful with your breasts. Don’t let them get bumped and later I wondered if that also included letting a boy squeeze them too hard. Even later I’d laugh at the idea that bumping or man-handling could hurt a breast or cause the dreaded—cancer. So unscientific, so old-fashioned.

Yesterday in the New York Times, and excerpted in many papers, the new-old research that an outside agent—bruise, wound or injury—may be the necessary catalyst for a dormant cancer cell to begin its changes. Cancer needs two factors: to exist in a dormant state and to have a trigger. An injury can be that trigger. Also explains –in a very crude way—why it happens that someone feels perfectly fine, undergoes surgery and then rapidly dies of cancer. Surgery may be a trigger wound.

Now isn’t that a scary dish to set before Cancer Land?

Winter Solstice

“Today is the darkest day and the beginning of the light. Pray for peace.”

For many years those have been what I have written in notes to friends on December 21st. I like solstice because it is about darkness and light. But today looking at those words it hit me that I am having an inner solstice too.

I have had a couple of hard days. Stuff with kids and stuff with us. More intimacy becomes more fear; moving closer to commitment sets off deep fears--mine and maybe his too.

So this morning when I heard, “Today is the darkest day and the beginning of the light” I thought, “Yes, this is the day that it shifts—from testing and pulling back to believing and moving toward, and from wondering if he really loves me to knowing we love each other. Any fights now are just us fighting our way to decide the kind of couple we want to be and not us tumbling off a cliff into the abyss.

Darkness becomes light. And peace

Walking in a Winter Wonderland

I’m making a list and checking it twice, and thrice and even nine times: his kids, my kids, his ex and mine. I wonder about all of this, and things like holiday traditions? What are his? mine? ours? Memories: his, mine, ours? The holidays add tension. I feel sad about relationships lost and fear about the complexities in this one as we add kids and expand our circle. Will we make it to a summer wedding, or cave in to their demands and criticism? I keep wondering.

Now, like the sign at the mall, my heart says, “You are here”.

Lost in the upbeat melody of what seems like an innocuous holiday song are these incredibly poignant words: “To face, unafraid, the plans that we made.”

Walking in a winter wonderland.

Life is so good and so Hard

Life is so good and so hard.
The people I have loved,
Those I have left
Those who have left me.
The people he has loved,
Those he has left,
Those who have left him.

"Ly" Day

We’ve had a big snow day today and in addition to dressing for the weather a day like this also accelerates word worries here at the home of a writer and an English teacher. Alas, a snow day is also “Watch Your Adverbs” day. Yes, sadly, on a bad weather day we are likely to hear the grating and lonely adjective that wants to be an adverb. The friendly and well-intentioned, “Drive safe” longs to be “Drive safely”. Ditto for “Drive careful” and its preferred “Drive carefully.”

But in addition to enjoying our word fussiness, we had a great day. John had no school but I had to get to work—my work increases in bad weather—so he did the cars and the shoveling and later brought lunch to my office. Tonight I came home to fresh pasta for supper. On a day like this I know we live happy and happily.

Obituaries

I have always read obituaries. I knew, even as a kid, that they were little stories. Now, as an adult I know they are often mystery stories. The writer is rarely the subject. Someone else is telling his or her version of the main character’s story. So, when reading them, I wonder at the focus, proportion and how reality would hold up if we could later interview the dead person.

The past few weeks I have read more closely noticing how many deaths in our region are of people under 65. I tell myself: please notice this; please live your life. None mention the fear at work or the love of clothes. One this week said “he had a perfect marriage” and I said “Uh oh” and read that one to John. He said, “Uh oh”. His marriage was described as perfect until a few years ago when he walked away admitting to himself how deeply unhappy he had been all those years.

So we know it is entirely possible that the final scribe, the writer of our obituaries, might describe a person they only know through random details: He always checked the box scores first thing in the morning. She loved to shop. She was a tireless volunteer. He was crazy about his car tending to it for hours every weekend. Who would know that these honorable behaviors masked unhappiness and avoidance of something or someone?

Who will know us when we die? It’s hard enough to know ourselves when we live. To get still enough to listen deeply to our own insides. We should be so tender with these fragile human lives, ours and the dead people in those little stories.

Tiger Time

What do baby seals and Tiger Woods have in common? They both get clubbed by Norwegians!

The jokes, the jokes. But also the questions. Why do men cheat? Why is it more upsetting that Tiger Woods cheats? We want to believe that this perfect golfer, perfect son, perfect athlete is a perfect human being, and so we hate to have our belief in perfection taken away? Maybe. And maybe it’s also telling us that men do not cheat to have sex with a prettier or sexier woman. After all Tiger is married to one of the most beautiful women in the world. Is it entitlement? Evolution—a specimen like Tiger is unconsciously driven to procreate? Is it access—athletes have women propositioning them all the time? Perhaps also we are seeing that a man as cerebral as Tiger didn’t think this through. He’s not a dope but he cheated and left a trail of texts and messages and evidence. He’s a better golfer than that if not a better person.

What will happen next? Will she stand by her man? Will we now see a wicked, expensive public divorce? And what does it mean for the rest of us?

And am I alone or are many woman really mad at the perfectly ordinary man in their life today just on principle?

Win One for Cancer

In our local paper today there was a story about a high school football rivalry. In the story the reporter says that Team A was playing “for” the coaches eight-year-old son being treated for cancer, and that Team B was inspired in their great play by a former teammate seriously injured a year ago. It struck me that neither team was—apparently—playing for themselves or for the joy, excitement or for actual competitive spirit of winning the game.

When did we start doing this and why do we do it? And how often are games played “for” or won “for” someone with cancer? You can find this in each sport. Last year in golf we followed the player-narrative of Phil Mickelson whose wife was diagnosed with breast cancer. Yes, the pink hat came out immediately—but also this sports/cancer/illness/winning narrative about using someone else’s cancer or illness to inspire good play.

It’s not new. We know, “win one for the Gipper” and we recall Babe Ruth’s famous point to the outfield to indicate where the next pitched ball would leave the park--the story says that he picked that homer for a sick kid he had visited.

But what does this say about athletes? They need a cause to play their best? They play better when someone is sick? And the point of this for the sick person? Ok, fifteen minutes of fame maybe. But does winning the high school game save the sick boys life? What is it we are really saying about cancer and sports and the myth and magic we roll together when they collide?

Cancer, Cancer Everywhere

Cancer, cancer everywhere and not a drop of info that makes sense.

Ok, mammograms are out—or they’re not. Pap tests are out—or they’re not. Prostate cancer. Whew- if you had surgery and are now impotent or incontinent maybe you and your doctor moved too fast. How does that make you feel? Ditto for mastectomy based on a mammogram interpreted as risk but now, maybe, the risk wasn’t quite what they thought.

Women are cancelling mammograms and lumpectomies. Men are baffled and even more afraid of a prostate exam. The fear goes way beyond the snap of the glove and “Is it really ok to let a man touch my bum—and what if I like it?”

What’s a human to do?

Combine this with the inverse economic incentive in healthcare: the more machines a hospital invests in the more radiologic services they have to sell. The more screenings we do the more cancer we’ll find. Yep. But what if some (a lot or a little) of what is found isn’t really a threat.

After age 50 we all have cancer cells in our bodies. So do we all “have cancer”? Do we all need treatment?

Language and the way the question is framed drive all of this. The best words I have read recently are Robert Aronowitz in his New York Times op-ed called, “Addicted to Mammograms” published November 20, 2009. What he shows us is that the way the argument is framed pre-determines the possible answers.

Resentment

It comes around again. No matter how much I know and how much I change this one comes around again. Sneaky too; I call it by other names: I’m “annoyed”, “hurt”, “challenged”. Sometimes I play the “I’m too spiritual for my shirt” game and think about how sad it is that he or they are less spiritually evolved than me. Yes, I even bring God into it. And then I realize, “Oh, this is resentment—and it’s mine!”

Last week I heard a woman talking about her resentment for her ex and about his ex who was the reason they are now ex and how when they were together she was resentful at him for not being more resentful of his ex. Hearing that made me laugh—which, gratefully began to help me take a step out of my resentment. The other thing that helps me is this saying that I heard in an Alanon meeting:

“Resentment is like setting yourself on fire and hoping the other person dies of smoke inhalation”.

Who Would I be Without this Thought?

A few weeks ago I did a workshop with Byron Katie—a woman who developed a personal growth and change method that teaches us to question our habitual thoughts. It makes for some challenging new thinking and for me some surprising insights and shifts.

The centerpiece is: Who would you be without this thought?

I’ve been trying to apply this to life at work, what—I think—people think of me and to my relationship with John.

Last night—listening to him cough and cough—and thinking “flu or cancer? Flu or cancer?”
Byron Katie’s question came to me: Who would you be without this thought? And the answer: I’d be at peace and I’d be asleep.

Aching for a daughter

I ache today. My step-daughter is pregnant. Her life moves forward. Our lives move apart. I understand but I cry. I write my prayers on paper. I sob them to God. Talking doesn’t work. I drive to the shopping place and touch soft things. I choose a sweater: soft, lavender, baby-colored, teary. In the dressing room mirror I look in my eyes. Crying has made them shine. I soothe myself. Lavender: Boy and girl combined. A baby. Mine.

We All Have Cancer

I’m reading the new book, “Anticancer: A New Way of Life” by David Servan-Schreiber. He was one of the founders of Doctors Without Borders and an accomplished neuro-psychiatrist when, at 31, he was diagnosed with a brain tumor. His book is about what he learned about cancer, cancer treatment and cancer prevention.

Some of it is not new: exercise, diet, alternative treatments etc. But what is new is his description of roles: the patients role in his/her own care versus the doctors. And how to sort medical info, nutritional info and much more on physiological impact of stress.

But this is the fact that blew me away: “One hundred percent of people have cancer cells in their bodies after the age of fifty.”

We all have cancer. Again: We all have cancer. In some people it develops into tumors or wild growth that becomes life threatening, in others it does not. But after age fifty we all have cancer cells.

That’s wild info to ponder in terms of prevention and what it means to maintain your health but it’s also a way to get our heads around our denial of death.

I think of Mary Oliver’s poem: “What will you do with your one wild and precious life?”

Red Light Night

I’ve completed my Scarlett Letter month. I re-read Hawthorne and watched the public TV made for movie recreation, and then, reluctantly decided that I had to see the Demi Moore version that was a movie a few years ago. So we rented Demi’s version—the title caption says, “Loosely based on Hawthorne’s Scarlett Letter”. And dear God it is loose and base.

The movie stars Demi as Hester and so she is spunky and feminist and bold from day one. Her strength does not come from her trials and tests per Hawthorne but instead she’s a fancy dress puritan who boldly flirts with the naked swimmer of a minister and she wows him with her beauty, physical strength and sharp mind. They both love to read! Wow! And yes it’s true that Demi took the liberty of changing one of America’s greatest novels to give it a happy ending—no death for the Reverend Mister Dimsdale—instead he gets to start a new life with hottie Hester and adorable baby Pearl.

But now I know—and you know –don’t rent this movie.

The fun part of our night was the rest of the scarlet theme. We included red foods, red lingerie and red light bulbs in the living room. At least Demi/Hester wasn’t the only one having great elicit sex.

After the Wedding

We had a great time in Baltimore. Stayed with an old friend who is like a sister. I am at home in her home and that makes visiting so easy. Feet on the coffee table, raid the fridge, read her books and dissect our lives in detail. That’s comfort.

The wedding was wonderful. Bride and Groom are 30 years old. In love for 6 years. Already a couple with a dog and habits and already family issues nudging at them. But watching them take their vows you could feel it. They have a bond and tenacity. A year of planning a wedding, going to school, working, changing jobs, deaths in both families and health issues of their own. They have built something that the wedding confirmed rather than created.

Many of the guests were older. Relatives of course, but older friends too. At our table everyone had been married, divorced, partnered and unpartnered. Yet no cynicism, no jadedness. I could feel the room pulling for the newlyweds as they were announced as “Mr. and Mrs.” at the reception. Be the couple that makes it, be the couple that never loses the love, be the couple that proves it can be done. Be that for you and for us.

John and I danced for hours. He said, “I don’t dance” and got up every time. He’s an athlete and musician so of course he’s a good dancer. And to seal the deal there was great music and we were all basking in the love of our young couple.

But I had this twinge the next day and even today. I felt some envy or maybe regret, the passage of time for sure. I know I wanted some of what the bride and groom have: The sense of being at the beginning of their relationship, the start of their lives, the opening act of whatever their story will be. I don’t know what act I’m in—third? Is there a fourth?

Today walking at the gym I had to stop and remind myself: Illness and death will come without my help. I don’t need to rehearse that part of the story. Don’t go looking for it. Instead at times like this notice the good, the love and the delights like this wedding.

Wedding

This weekend we fly to Baltimore for the wedding of a young friend. S. was 16 when I met her. I was a staff member at the high school where she was a dancer. Somehow we stayed in touch over many years and many miles. She went to Houston, DC, New York and abroad. I moved from Baltimore to New York and we both went thru many changes. But a connection remained. Now she is 28 and getting married and to a wonderful man who is kind and smart and steady on his feet and in his heart.

We fly tomorrow morning. We’ll stay with old friends. We will be family for S. at the rehearsal dinner and on Saturday we’ll witness the wedding vows and dance like crazy at the reception.

Many kinds of joy in this weekend. Flying—which I always love, and visiting old friends, seeing a young couple take this amazing step toward commitment, introducing John to parts of my past, having play time in Baltimore including seeing the Edgar Allen Poe exhibit at the Museum of Art, and on Saturday night dancing with him. That is the sweetest part. We’ll get to dance together.

Sporting News

It’s been a good weekend. Lots and lots of sports and enough time to enjoy them together. This afternoon the Pittsburgh Steelers—my team. This evening The New York Giants—his team. And added to the mix major league baseball playoffs—his team the Yankees. It hasn’t been my team—The Pittsburgh Pirates-- in many years. But I love baseball enough to even watch the Yankees play.

While we watch we read the papers and talk and touch. We place bets that have mutual payoffs under the covers.

In the background of all of this there is family. A nephew will marry. A niece is pregnant. When do we visit his family and mine? Routines of being a couple form new layers and bonds. And still with all of this love and warmth I read the news of cancer research and the obituaries scanning for the words: colon cancer.

It’s still there. It never really recedes far. I watch his body and the calendar. We place bets on both.

Scarlet Letter A is for Able

I’m re-reading The Scarlet Letter and finding myself most moved by what I did not notice when I read this as a younger woman. Hester is transformed by her experience of being an outcast and she becomes a “sister of charity” writes Hawthorne, helping the sick and dying of the community. In a most moving passage Hawthorne writes that her Scarlet “A” intended to signify adultery became “transformed to mean Able, so capable was she of helping and caring”. It made me laugh; Hester is a caregiver!

Again this idea that we can go through very hard things and come out the other side --changed and transformed—and better for the experience.

As to how Hester’s transformation occurred Hawthorne writes, “Shame, despair, solitude; these had been her teachers. The scarlet letter was her passport into regions where other women dare not tread.”

Flu and Fear

Last night we were watching “Finding Forrester” the great movie with Sean Connery as a J. D. Salinger-type writer. And John began to have abdominal pain. Note: See right there, “abdominal pain”…not a tummy ache but “abdominal pain.”

So I begin to ask questions, examine scars, assess levels of pain. No I’m not a doctor or a nurse I just play one in my head. (And yes I did have a Dr, Kildare shirt when I was 13 and crazy about Dr. Kildare and Ben Casey).

Good news: I stayed calm
Bad news: I assumed the worst.
Good news: I packed a small bag; got out the hospital notebook and made sure I had phone numbers and a cell phone.
Bad news: I what?

It was a tummy ache. He slept on the couch. I put myself to bed and made me stay there.

This is what cancer does to you—or to me. I was ready to go, blue notebook in hand, expecting the worst.
It was just the flu.

Clergy and the Other Woman

Yes, a big story in yesterday’s New York Times. Front page with amazing photo of a priest baptizing his own child. An article about clergy—Catholic and others—who have had sexual, romantic and intimate relationships with women who were/are parishioners. Relationships with adult women which violate vows of celibacy and perhaps vows of marriage. Trouble in Riverside City.

We react with...what? Indignation? Surprise? The worst thing we do is wonder about the women. But why are we surprised? That is our own complicity in these affairs.

I am reminded of dear Hester Prynne, heroine of Nathaniel Hawthorne’s “Scarlett Letter.” If you ask people what that book is about they will tell you that its about a woman caught in adultery or about a woman who has a child with a man while her husband is away and her penance and punishment is to wear the Scarlet “A”, and yes it is also about how she lives out that fate.

Here is the part we forget: Hester Prynne did have an intimate relationship with a man, and that affair did result in a baby—the devilish girl, Pearl. But there was a man too and that man was Hester Prynne’s pastor. Her lover, her partner, the father of baby Pearl was Hester’s minister, the man charged with her spiritual guidance and the spiritual formation of the community.

So, really, who is the sinner in that story? And why do we always think of the woman? It’s true even now. We blame the woman—both women. When a man has an affair the other woman is condemned for “taking” another woman’s man; blamed for making him stray, and for breaking up a home or family. But we also and often blame the wife too: Her man would not have strayed if she was (insert favorite adjective here: sexy, smart, pretty, attentive, supportive…) Enough. Yes, she is also blamed.

It’s a set up of women. Both women. But what about the man? For Hawthorne’s story what about The Reverend Mister Dimsdale?

Why do we do this? Is it a backhanded way to say that men are so weak they can be lured? That they can “stray” like a dog or a chicken? Or is it something more dangerous and dismaying for women. No matter what happens we blame the woman: the one who is active and the one who is passive. We blame the bad one and the good one. We blame Eve over and over and we forget that Adam came first.

Lotsa Helping Hands

Today at the YMCA I talked to a man who is caring for his wife who has cancer. It’s been a long haul and we talked about how a hospital can take over your life and how hard it is to “Take care of yourself”, as everyone tells a caregiver.

The hardest thing, he told me, was all the phone calls every night. Everyone wants to know how she’s doing and what the doctor said and what happened today. This man doesn’t email and the phone calls are almost the same one after the (at least ten a night) other. If you have been there you know this is true.

But here is a resource for caregivers and families coping with caregiving and trying to keep everyone connected and up to date. Take a look at the website: Lotsa Helping Hands.com It is a free web-based service that allows you to coordinate care, organize family members and helpers, best of all you can post updates and messages for everyone who wants to know how the patient is doing and what the doctor said today.

You post your update and it is emailed right away to anyone who signs on. Free for the family and free for friends. There is a calendar function to schedule chores, meals, rides etc. And tons of caregiver info as well, including, yes, “Take care of yourself!”

Beach Surrender

We went to the beach this weekend. I go alone in the morning to pray, writing the names of each person on the edge of the shore and watching to see the water come up and take the prayer away.

This weekend I wrote the names of all of our family members his and mine, spouses and kids, siblings also. I wrote his name and my name and I wrote my workplace too. 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 fear returns and my wish to control something or someone is already back in my head.

Surrender is such an imperfect process but I do think it is a process. I really do wonder about people who say they have done it and it’s done. Do they really never worry again? Worry means 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?”

These are the things I surrender and later worry: His health, our relationship, his family, having time together, my health, money, my job, my stepdaughter, my granddaughter, his sons, my ex-husband, his ex-wife.

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

Over and over I surrender and return to these things.

The ocean’s rhythm is familiar; in and out, in and out, washing, soothing, wearing me down.

ICU Waiting Room

The first time I was in an Intensive Care waiting room I was 18 years old. It was a Wednesday night in July. I had come home from ballet class and my mother called to say that my father was on the living room floor and she could not wake him up. An hour later the family was gathered in the Intensive Care waiting room at Alleghney General Hospital on Pittsburgh's Northside. My father had had a stroke; he never regained consciousness, and within a few days he was dead. My strongest memories of those few days are the details of that small room and the strangers with whom my family shared that space.

Now, sadly, many years later, I have become a kind of expert on these rooms. Over these years, I have waited for and watched as four brothers and sisters died, and I have learned many things from Intensive Care.

I know how a hospital works and how to work one. I know what to pack and how to dress for this experience. I know what to say to nurses and what not to say to doctors. Like a traveling salesman who knows exactly what hotel room to book in any city or how to create an office in an airplane seat, I know how to "do" Intensive Care.

I have thought, in my more practical moments, that I might write a guide to the practicalities of the ICU, ways of making this difficult experience less stressful. In my more bitter moments I have thought of writing a critical piece lambasting medical personnel and the business part of hospitals for what sometimes is less than humane policy. I have even made lists to help me organize and give order to the chaotic experience of the Intensive Care waiting room.

Physically, most of these rooms are the same: small sitting rooms with an adjoining private bath. There is a TV that is always on and there is a black board and a phone on the wall. Usually there is a round table for eating and a coffee table with old magazines. Once you enter this room nothing else exists. Your world becomes the patient and the four, fifteen minute intervals that you can see him or her. There is no visiting in the regular sense; We are waiters, not visitors in Intensive Care. Those who visit intensive care wait for doctors, wait for news, wait for visiting times, wait for other family to arrive, wait for phone calls, wait for answers and wait to, someday, take another full breath again.

Among the practical advice I might share is the etiquette; how to live among the strangers you meet in this room. You will spend hours and days with them and there is a code of behavior: Take accurate messages, don't hog the phone, you can openly eavesdrop but don't interrupt. You may bring sweets to share and take a turn making coffee, but never ever offer hope to another family. That is their business. Yours is yours. This is a life raft of sorts, and you must be careful in this small space where everyone is filled with fear and tension.

If I did give advice to a newcomer to ICU I’d provide a primer on terminology. There are so many code words ( "codes" being one of them) and specialized terms. You listen to medical explanations and become conversant with medical jargon that is both meaningful and meaningless: "Counts are up (or down)", checking "N.G.'s" platelets, and vitals." You care about all of these things intensely and you don't really give a damn. Will he live? Will she die?

There is also a lesson on human relations I have learned in ICU, an insightful paradox I have observed over and over in my days in these waiting rooms. At the very time when a person - or a family - must turn fully inward to care for themselves and to will the survival of their loved one, there also emerges a most generous compassion. I have seen race, class and age differences dissolve instantly. I have watched people change diapers and tires for, and share food and fears with, others who, in any other setting, might be spurned or shunned.

But these are not the real lesson of the ICU waiting room. The real lesson is something that is harder to put in a handbook. Each time I sit for days or nights (they are the same) in Intensive Care, I relearn this. Sometimes I wonder if that is why I have to go back. I'm still trying to get the lesson.

This big lesson is not about medicine or any scientific fact. It’s about relativity and priorities. I have seen it each time as the details of “life” are left outside the ICU door. Most of what we care about when we are engaged in the rest of our lives, in what we erroneously think of as "real" - that is, the life we were living before we got the call that said, "Come to the hospital" - stops at this doorway. What people in Intensive Care waiting rooms know with certainty is that this is real life, not what we left at home by the phone.

I also know that few of us are wise enough to learn from someone else's experience and so we live our lives as if the day-to-day is real and that we will have time to do things later. It's not until that phone call and it is your mother/sister/brother or child that you get to see how fast "later" can show up.

The big lesson of Intensive Care is just what doesn't matter after all. For example: grade point average, where you went to school, what you drive, credit rating, house size, annual income, clothes and not even work. No one in Intensive Care talks of these things.

And so in one screech of tires, one lump, one scream, or one unexpected bit of blood, priorities change. In a single afternoon in Intensive Care, watching life drain out of someone you love, you get it.

It would be a gift to package the power of this perspective changing experience, but it doesn't work that way. I have tried, but it's a slippery lesson. It only comes when it does and only when we are open to it.

Cooking and Cancer

Tonight, for our dinner, I made a meal that was part of a food article in last Sunday’s New York Times Magazine: Pork chops with pecan and ginger sauce; polenta with goat cheese and rosemary, and apples grilled with Balsamic maple marinade.

I know, amazing combinations but even more amazing is that I shopped, prepped, cooked and served this lovely and delicious meal. This is something I could not possible have done 18 months ago.

I realized that this is another of the unintended and unexpected consequences of cancer: I had to learn to cook. Before John’s cancer I may have made a chicken breast—no not even that—I made –maybe—a casserole. Then with cancer and chemo we had a dilemma: He could not cook and if our friends did the cooking we would die of lasagna poisoning. So my dear friend Susan became my Cooking sponsor—teasing and gently nudging me toward making food from ingredients—yes other food items that are combined to create cooked food. We began with Bisquick—still a marvel—the “Magic Pie”. And then I tried a few other expereiments...some good and some edible and some just funny.

What shifted was the awareness that having ingredients on hand—it’s called a pantry—I learned that from my other dear friend Leslie—could lead to foods that tasted good.

Many more experiments later, last week I found myself reading a recipe—a complicated one that included glazing pecans and whisking dark brown sugar with Balsamic vinegar. And tonight voila! Dinner.

Follow Up NYOH Day

This afternoon I met John at the New York Oncology Hematology Center for his follow-up appointment and blood work. Driving there I could feel the old feelings revive. The place is decent; the people are good and very caring. I expected to have a fearful and negative reaction when I went thru those wide air-pressure doors but not so. Yes, I felt the fear and all those questions racing thru my head: What if the blood work isn’t good this time? What is they see something?

So yes all the worries were there but also a surprising good memory too. For those six months when we met there every week—John coming from his office and me coming from mine--bringing bags of books to read, stopping to pick up food for us and some great treat for the Staff and other clients—there was a good feeling mixed in with all the others. John and I spent four hours there each week. It was our talking time, gossip time, reading to each other time. We got to know other patients—and families—on the same schedule. We saw people start to look better and yes, we saw people slowly look much worse too. But there was a lot of care and a lot of caring. Those memories were also revived when I walked into NYOH today.

Today they did John’s blood work and a cursory physical exam. He had to answer questions about his bowel movements and his urinary system in front of me. That’s real intimacy! Lisa, the PA was warm and easy to talk to. She confirmed that it may take another year to see if the numbness and neuropathy will ever leave his feet. That is the very physical souvenir of the chemo, and she looked at his belly and scars—the remaining souvenir of surgery.

Today’s blood work was fine but the CEA—the cancer marker—takes a longer lab. So while I feel better now, I’ll feel better on Monday after we know that blood test is OK too.

I continue to play with, “What will we do if and when it isn’t OK?” But for today, this Friday night, we’re eating calzones and making love.

Fighting to Remember

For two days we fought like cats and dogs—or maybe like Mars and Venus. All the things that the experts and relationship books say not to do we did: Brought up the past, said mean things, accused, said “always” and “never”, got loud, got silent, went to bed mad, didn’t go to bed at all. And then we cried. We sat on the bed sobbing. Were we really going to end this? What was this fury and terrible desperate pain between us? And inside of me I was asking, “Why now?” The past several months had been so happy; we’d had such a wonderful summer; we were making plans. We were both shaking our heads and reeling from our battle. And then…

And then yesterday I came home from work to a phone message from the oncologist. A reminder call that blood tests and follow up cancer screening is this Friday. Neither of us had remembered. Neither of us had put it on the calendar. But here it was and we both knew. Deep down in the body or mind we both knew the scary time was coming again and the risk to us was back. Now even more frightening because we had gotten comfortable again.

Cancer had gone on a long trip.

And we just got a postcard saying, “Be home soon; wish I was there.”

The High Cost of Caregiving for Women

65% of people who need caregivers rely on family, friends and neighbors for assistance. The National Caregiving Council estimates that 75% of caregivers are women. The average caregiver is female, 46 years old, married with children and works outside the home.

The odds are good that you are or you know one of these women. You might not know that caregiving is a health hazard and career hazard for women.

Metropolitan Life has studied caregiving and its economic consequences. They described the career consequences of women who are caregivers as follows:
33% decreased their work hours
29% passed up a promotion or training
22% took a leave of absence
20% went from full time to part time
20% quit their jobs
13 % retired early

You can see the career consequences and easily calculate the economic impact on a caregiver’s family. But there are also health implications for the caregiving woman. Another study by Met Life, comparing caregivers to non-caregivers, showed that caregivers have a 28% higher incidence of hypertension, heart disease, and poorer immune function. We also know that caregivers very often put off their own medical check up’s, tests and health screenings because they are focused on the health and medical needs of the loved ones they care for.

There is so much more than just the time and stress and worry.

Roll Away the Stone

Big stuff today. Talking to my therapist about this relationship and about John’s cancer. Trying to sort out what is my over-the-top fear and what is diagnostic and statistically probable in colon cancer. We were talking about that and my sense of urgency to make some peace with all of this when I felt an idea or a realization move from the center of my body to my mouth and become words.

This is what I said to her: “I am afraid that if the cancer comes back, and if he dies, it is because I allowed this relationship to be, and I’m afraid that if the cancer comes back and he dies that it is my punishment; I will lose him and I will be humiliated.”

Even as I said those words I was amazed that it was coming out of me and I knew that was the true fear. Fear not just of cancer --that will hurt him or kill him—awful all by itself—but that in some way it is a punishment of me—and that the punishment takes the form of abandonment and humiliation.

Yes, of course these are my “issues” fear of abandonment and pervasive shame. But Holy Cow---the way the fear was coming to me was absolutely Biblical.

I could see her reaction as I spoke and we both got it that this is not just a psychological issue but a spiritual and even theological issue.

But here is what is both troubling and baffling me. I did not grow up in a fire and brimstone family; no one taught me to fear a punishing God; all of my spiritual practice and professed belief is in a loving God. But these fears belong to another belief system that I have not had any awareness was operating inside me.

Have I channeled my father’s early Catholic God? Is this cultural? Past life echoes? The collective unconscious? Really, it makes me wonder and it makes me pray.

This deeply held and silently operating belief is in my way. I knew it and my therapist knew it. I said to her, “This is in the way; this is why I cannot decide and why I cannot think clearly.” She had the exact image as I spoke this fear: There is a large boulder in my path.

I knew at once that even the image was Biblical. There is a stone blocking awareness, clarity and peace. The stone is blocking my belief in a loving God and in God’s will.

Who will roll away the stone?

Throw Them Over the Edge

Managing my own thinking—and not scaring myself to pieces –is one of my ongoing challenges as a caregiver and partner. Here is my new strategy to deal with scary thoughts.

Every morning I walk at the YMCA. The track is elevated and overlooks the large gym floor below. That’s a help often because I get to watch the Pilates class or the killer Boot Camp group grunting and puffing thru a workout that would kill most Marines. Watching them makes me very happy to be walking or jogging.

Today as the fear thoughts started in on me I had a new thought, “Throw them over”. So each time my head cooked up a new “What if…” scenario I’d say “Nope, over you go.” and toss that thought and picture over the railing and onto the gym floor below. It also helped to imagine these scary thoughts as scared, bratty little kids so when they land on the gym floor they can run around and wear them selves out—away from me!

Scared to My Roots

I had a hair appointment today. I love the woman who does my hair. She has the best color sense and a gift for seeing the whole person: face shape, hair type, and personality. She was the person who told me, “You have 43 cowlicks; your style will always be messy, sexy layers with lots of movement.” After learning that about my hair I now just ask for “messy sexy layers” and my hair looks and feels like me. And it moves a lot. Just like me.

She is also a great people person. We talk about relationships, men, sex, aging, work, and we talk about his cancer and how that changed my life. Therapy and great hair for just one, well, pretty big price.

Today when I sat down she said, “I’ve been worried about you.” She told me about another client that she’d mentioned before. This other client, a man, also had colon cancer about a year before John. She has used his story as a way to console and encourage me. The other guy did well and was always doing well. He just remarried a few months ago.

But now, bad news for this man I never met and whose name I don’t know. Cancer has returned and it’s wicked. Pancreatic cancer at full blast and “He has”, she tells me, standing very still behind my chair, looking at me in the mirror, “he has a year to live.”

I sit for 30 minutes while that information and the new warm-toned, golden hair color penetrates to my roots. Cancer back. New marriage. A year to live. Am I looking in my own mirror?

Lying Awake

Too many “What if’s?” I lie awake and they flood me: What if the next blood test is bad? What if the mark on his leg is more cancer? What if I have to face this again? For him? For me? What if I lose my job? Will my friends make it through another round with me? It was hard on everyone last time; everyone worked so hard to help me and us. Under all of this is the big one: What if we don’t have time? What if we don’t get to live out the love and hope and fun we have looked forward to? What if he dies while his kids are so angry? Will there be enough time for them to reconcile and not out of guilt? What will happen to them if they are forced to choose guilt or fear? Is there enough therapy in the world?

I keep trying to find a solution to the unsolvable. I keep wanting to make the equation come out right. But I don’t know how to solve for X and I don’t know the formula for his happiness, my peace, his kids to be well. The shortcut terrible solution I offer him is go back, go back.

They will never know how many times I sent him home and he wouldn’t go back.

Caregiving Touches All of Us

Former First lady Rosalyn Carter said this about caregiving:

“There are only four kinds of people in the world—those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”

Wonder Woman's Bracelets

At the end of the day
It’s your bracelets I want.
Not your hair
Or silly headband
Not the girdle
Belting your abs of steel.
Not even your courage
unadorned.
But the bracelets?
Yes, the bracelets
that can stop death.

Patrick Swayze

The news that Patrick Swayze has died makes me so sad. Like many people I loved him in Dirty Dancing and loved that he was a handsome but not quite classic handsome guy. And then over the past 20 months we were pulling for him even knowing that his cancer was bad and that his time was short. Watching his fight to work and love while undergoing fierce treatment made him all the more admirable and yes, manly. Prayers for him and for his family. And in his honor today let’s put on the music and dance.

Colonoscopy Done

All done and happily at home. Still a tad woozy from the magnificent drugs. (No wonder Michael Jackson had his own.) Results were fine. Doctor was great. Karma: It was John’s doctor.

Here’s my lesson though: One of my real fears was that I might have colon cancer as a kind of punishment for this relationship. Ok, I know that I say I believe in a loving God, but at times like this I must really have a mean Old Testament God lurking somewhere inside my belief system.

Other cancer caregivers have you had these kinds of fears about your health?

For the rest of today I just say thank you to that and all other gods and look forward to a lovely chicken breast and baked potato for supper.

Tonight at 8pm Obama speaks to Congress on healthcare. That too is part of Love and Cancer. Let’s listen in at 8PM.

Colonoscopy Mine

It’s 6:30. Normally dinner time but tonight I am drowning in 64 ounces of peach flavored Vitamin Water and Miralax. Yes I am doing it. I am –finally—having my colonoscopy tomorrow. So it’s prep time: Four Ducolax and a big bottle of Miralax with the once a favorite now doomed to bad associations, peach flavored water.

I’m more than halfway there but I made a terrible mental calculation. When I read that I needed to drink 8 ounces every fifteen minutes my brain told me that was four glasses. Yes, you see why I am a writer and not a scientist? Do the math I did not do—it's way more than four glasses.

Ok, I’m back now…uh huh, the stuff is working. I put the new Vogue in the bathroom and –I’ll be wanting to change this—“Gourmet Rhapsody”—the new novel by Muriel Barbery—she wrote the amazing book “The Elegance of the Hedgehog” but the new book is about the food critic from Hedgehog and yes about food. Food! Foood! Oh God food! I swear I’ll never drink peach Vitamin Water again and will I ever want to eat food again. Be right back….

So yes I am doing this thing that I have put off. And no the issue is not this prep and it’s not the procedure. Look up my bum all you want. (Truth: I will shave my legs tonight and use self-tanner—so what if I’m unconscious—I’m naked and I’m vain.)

No, the real issue is what happens after the procedure. In an instant I can be back in that miserable little curtained partition with John—now almost two years ago—and the doctor’s words, “you have a problem.” I really do like that he did not say “we..” He was clear about that; he said “YOU have a problem.” Then he used the words “growth” “cancer” and “surgeon”. The rest is history and the rest is on this blog—(if you joined us late go back to the early entries.) John had no symptoms and no problems. We were planning to go out to lunch but instead we went to a surgeon and went home to make a million medical phone calls.

The other issue is this: I’ve seen colon cancer up close and I’ve seen the surgery aftermath up close and I’ve seen the chemo up close and as wonderful as John has been through all I of it—it was pretty shitty.

That seems like an appropriate place to end. More to come.

Labor Day

Labor Day is the best holiday weekend, coming, as it does, with nice weather and no obvious family obligations. There is, however, a strum of anxiety that crosses these few precious days. This is the last call of summer and we want to order one more round of fun before the house lights come up on the day after Labor Day. In that harsh back-to-work glare we’ll have to take another look at the lists and the lives that summer’s warm intoxication allowed us to deny.

There is something good for us though in this Labor Day process. This is the time when many of us sort and discern and make our decisions for the coming year.
The New Year begins now, and we know that in our bones. For at least twelve years we started over on the first Tuesday in September. Back to school meant that we could try out a new identity forged over the summer. Maybe your look changed. Had you let your hair grow? Or cut it short? Would everyone sense the sophistication you gained visiting your sister in L.A.? Back in June you were that same old kid, but every September a new you debuted the day after Labor Day.

There were inner changes as well. In September you promised yourself you'd be more popular, more friendly, more outgoing. Or maybe you decided you'd study more and hang out with the good kids. Every single year you could try something new. You could be a scholar this year after a past as the class clown. Or you could be the friendly one after years as the grind and curve setter. The opportunity for a re-do came every year the day after Labor Day. And it still does.

No, January isn’t the right time for New Year’s resolutions. How could it be? We’re too busy with the holidays and broke from gift giving. Are you really going to create a new body or mind or spirit in the middle of all that? Come on.

September is the time to not only promise yourself a new exercise program, but to start it. It's light after work and it's not too cold in the morning. September is also much better than January for starting a diet. You are coming off a summer of fresh foods, and you’re not bloated by 30 days of holiday treats and booze. As for a new look; who can afford one in January? You wear your name off all your plastic just trying to get through the holidays, and then tax time is creeping in.

No, the new look and image and relationships you have been promising yourself come in September just as they did when you were a kid. Remember how it worked in Junior High? You decided to wear a tweed jacket because that summer you discovered poetry (or girls who liked poets). Or you promised yourself that you’d set your hair in a smooth flip every morning to look like those girls in the magazines.

In September you could try out in public all the looks you had practiced in the mirror behind your bedroom door. So what if the good intentions only last a few weeks. Some part of it always stuck, some part of the “new you” was the real you-- and real change-- and that's how you moved on.

We still can. The new you begins now. This is the time to be kinder, nicer, smarter, to listen more, eat less and hang out with the good kids. It's a new year. Happy New Year!

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.

Lessons from Drumming

In 1994 until 1996 I studied African dance and had the opportunity to dance with live drummers. It is the best way to dance—feeling the percussion as it enters the body not just the ears.

In my notes from 1994 I found this note to myself that I wrote down after an African dance class at Omega Institute. It says:

Listen for the beat under the beat.
Listen for the break—for the signs and signals that tell you to change or to stop what you are doing.

There is a dance lesson for the heart, for the lover and for making choices in a relationship.

Just Last Year

We were at the beach this weekend visiting John’s mother. We had a good time seeing movies, taking walks and eating her amazing meals. Everything, everything is from scratch…I keep wondering where to buy this marvelous ingredient called “scratch”!

But there was a haunting feeling too that we both felt. We realized what it was when we walked up the tall staircase from the beach. A year ago John could not walk those stairs easily. The chemo was exhausting him. He could only go into the water up to his waist because of the port installed near his collarbone. His hair was slowly coming out. He was more sensitive to the sun and his belly—usually firm and strong-- was still soft from the surgery.

A year ago. “This time last year” I kept saying to myself. We talked about the fear we could not even mention a year ago. It’s not really gone. In today’s obituaries I read of a woman, 57, dead from colon cancer, so I know it’s out there. A specter. A threat. But maybe that haunting has a good side. It keeps me grateful for every day we have. It keeps me asking, “How important is it?”

It's Not Just the Boys

Another Governor has had an affair. This one is South Carolina. His staff thought he was hiking the Appalachian Trail. But no, he was in Argentina with his mistress. An eight year relationship but he got caught. Tears on TV, a hurt and angry wife. Oh, we shake our heads, “What is it with men?”

But, and I know I am throwing myself in here, it’s not “the men”. Every one of these men who had an affair had it with a woman. So what is it with people?

Yes maybe there is a power/political thing going on. Bill Clinton et al. The privilege of political office etc etc.

But more likely it is something human that says “I want more; I deserve more; it’s here, I’ll try.” There is something about mortality in affairs. Sex is life. Passion affirms libido. Libido is creativity long before it has anything to do with sex. Infidelity is a tragic and very backhanded plea to live.

I was one of the women. I know what a man can look like when he wants to live and when he wants to not have not lived. The best men, the nicest men and even the smartest ones do fall.

Power Games

I’m reading Sara Dunn’s first novel, “Big Love” this week. I came to that after reading her new—and second novel, “The Secrets of Happiness”. She’s a terrific writer, whom I suspect deeply mines the real and factual to create the fictional. But it works because she is funny.

In the new book—really the old book--she is writing about the man she lives with. One day he goes to the store and calls to tell her he’s not coming back because he loves someone else. This is the kind of real or fictional scenario that allows for endless rounds of “Better or Worse”. Better to be surprised? Worse to suspect before you find out? Better to get it on the phone? Worse to not even be able to hit or scream?

But later in that chapter Dunn writes this:

“The person who loves less has the power in the relationship. The person who is not afraid to leave has the power. Infidelity is power.”

That stopped me. I had to read it over and over. Another mindless gal chat game: Do you want to be the one who loves or who is loved? Do you want to be the lover or the beloved?

Is infidelity power? Or is it revenge for feeling no power at all?

Reconnecting Reawakening Reunion

This weekend I was at my graduate school reunion. Three days with writers and artists--people who use their creative energies daily in their work. People I have not seen for ten years. People who are ten years older than they were the last time I saw them. People who mirror back to me who I was and who I am now. We talked about the kinds of work we are doing. We compared that to the work we thought we’d do when we got our graduate degrees ten years ago. After several meals and after several layers wore off we also talked about marriages that failed, marriages that struggled but stuck, children doing well, children struggling and children that died. We talked about relationships that took odd turns: the friends-to-the-end friend we made at school that no one has heard from in years, and the unexpected friendship that clicked after we all left Vermont, and the friendship that became a love affair and the ones that began to bloom this weekend.

I found that some people remembered me married and some did not, some knew of John from this blog and others got the full blow by blow of love in the time of cancer. What was surprising and comforting and made me believe in myself and others again was the kindness and caring of old friends and strangers.

Testing

Tomorrow I take my ex-husband for his colonoscopy. In the past this would have just been an errand, a way to help a friend, a companionable thing to do. Over 50, we all have this test and you need an escort—a driver. So, over the years I’ve done it many times. But is it so changed now because of John. That one time sitting in the small curtained cubicle waiting for the post-colonoscopy discharge, expecting to hear, “A few polyps; we’ll see you in five years” but instead heard, “You have a problem.” and then the year of cancer, chemo, surgery, the pump, numb hands and feet, and fear of his death—which has never really left.

Already I have this fear again for my husband. Not wanting those words for him or me or anywhere near us. One test—not even mine—changed my life.

If You Like it then You Shoulda Put a Ring on It

Last night we went for a walk in the rural cemetery where we have walked and talked for years. We had been there before we were lovers and after too. It was the place we had each gone alone during the time when we had taken our break from the relationship.

We sat on the stone wall remembering our conversation from years ago. That first day he told me that if we fell in love, “my sons, who love their mother, will hate me forever.” He knew.

Last night, on that wall, he said, “Baby, will you marry me?”
And I said “Yes”.

And then I put on the ring.

The Other Woman

The past two days Dear Abby, the advice columnist, has run letters from and about the “other woman” (OW). Most are scathing—the hatred runs so deep. A few are guilt-ridden, apologetic, defensive. Some are from men—the “other man” and the guilty spouse who is having an affair with OW.

I read them. I make myself read them and I make myself feel the anger and shame all the way through. I don’t want to pretend I was not the OW and I don’t want to defend it. I can explain it to myself and I can rationalize and now—years later—I can say that this is what became of the relationship, and I can enumerate all of the reasons and “issues”. I have lived all the parts of this equation. None of them are good, none of them are faultless, none are without pain.

Obsessed by Dress

“What shall I wear?” is society’s second most asked question. The first is, “Do you really love me?” No matter what one replies to either one, it is never accepted as settling the issue.

--Judith Martin b. 1936

Happy Birthday Day

John’s birthday today and it has been fun. The gifts are all golf-themed: balls with his name and special red tees and a book of golf and grammar and new golf shoes. We played 18 holes this morning then both went back to work. I made a cake—chocolate and coconut, my own recipe. Birthday dinner tonight. It feels normal and natural and the very reality of that—after a year of cancer—makes this day quite special.

Brad and Angelina

When I teach writing to 10th graders we always begin with current events. In their world those events are celebrity and music based. Every year for the past six years Angelina has delivered the goods and made my teaching life easier.

Now, today, in the car I heard the news: Brad and Angelina are over!

Is it an omen?
Should Jen take him back?
He’s a dad now.
What a mess!

This Fish Needs a Bicycle

I am 55 and I have decided that even though I do not completely understand my relationships --or myself in relationships--they are important to me. I was raised in and influenced by the unsettling mixture of Helen Gurley Brown and Gloria Steinem so I enjoy being in love but always with that odd guilt or shame for liking to have a man in my life and in my bed. I have decided to not care what others think--or in truth, to care a bit less--and I have decided to accept that it may be a past life thing, or a dysfunctional family thing, or maybe it’s a social construction of reality and gender relations thing, but I like men. I have pretended, dissuaded, defended and confounded myself and others because of these men certainly. But it’s true. I do. I like having a man in my life.

Summer Plans

We sit with calendars and block out vacation. It is a mixed blessing though. If I don’t claim some definite time off from work the summer will fly by and I’ll never see the beach or have real vacation as a couple. But when we sit to plan and mark off the days: this one for the beach and that one for the city and that one for the family event and then times to go see dance and theater and music –and now we add golf and swimming...suddenly we are turning the pages and saying "save that date” and we are looking at Labor Day. I do not want to wish—or worry—or plan my summer away. Where are the lazy, hazy days? Where is genuine leisure?

Triangles and Words That Heal

This morning in church we prayed, “But only say the word and I shall be healed”, and I laughed out loud. This week it was words that jump-started some healing for me: The Karpman Drama Triangle, a psycho-social theory developed by Stephen Karpman. In it he describes the cycle or triangle of how we move from rescuer or persecutor to victim—always cycling thru to victim, victim, victim. It came to me seemingly out of the blue in some unrelated research but there it was, the very “word” I needed to hear and heal.

It is perfect and perfect timing. I realized this week that I have been trying to out-victim the victim in my relationship with John and in other parts of my life as well. Karpman would simply say, “Uh huh.”

Here’s where it get’s tricky: cancer care. People with cancer—those in the throes of chemo and surgery are kind of victim-y and cancer caregivers—those in the midst of physical and emotional exhaustion are wonderfully victim-y, and those surrounding both of them make perfect persecutors: “You should”, “One should”, “You never should”, “You must”, “Do it this way, and “Well…”.

Cancer care is loaded with victims, rescuers and persecutors all vying for top billing as best and biggest victim. It’s so easy to say don’t do what you don’t want to do, or take care of yourself first—God knows we preach that crap all the time--but in real life and real caregiving theory is honored in the breach.

Maybe the Karpman Triangle can be taught to caregivers. Maybe we can give out little triangles as a reminder. Maybe I need a triangle tattooed on my right hand.

Hester's Dress

The door of the jail being flung open from within, there appeared, in the first place, like a black shadow emerging into sunshine, the grim and grisly presence of the town-beadle, with a sword by his side…. Stretching forth the official staff in his left hand, he laid his right upon the shoulder of a young woman, whom he thus drew forward; until, on the threshold of the prison-door, she repelled him, by an action marked with natural dignity and force of character, and stepped into the open air, as if by her own free will. She bore in her arms a child, a baby of some three months old, who winked and turned aside its little face from the too vivid light of day….

When the young woman-the mother of this child-stood fully revealed before the crowd, it seemed to be her first impulse to clasp the infant closely to her bosom; not so much by an impulse of motherly affection, as that she might thereby conceal a certain token, which was wrought or fastened into her dress. In a moment, however, wisely judging that one token of her shame would but poorly serve to hide another, she took the baby on her arm, and, with a burning blush, and yet a haughty smile, and a glance that would not be abashed, looked around at her townspeople and neighbors.

On the breast of her gown, in fine red cloth, surrounded with an elaborate embroidery and fantastic flourishes of gold-thread, appeared the letter A. It was so artistically done, and with so much fertility and gorgeous luxuriance of fancy, that it had all the effect of a last and fitting decoration to the apparel which she wore; and which was of a splendor in accordance with the taste of the age, but greatly beyond what was allowed by the sumptuary regulations of the colony.

The young woman was tall, with a figure of perfect elegance on a large scale. She had dark and abundant hair, so glossy that it threw off the sunshine with a gleam, and a face which, besides being beautiful from regularity of feature and richness of complexion, had the impressiveness belonging to a marked brow and deep black eyes. She was lady-like, too, after the manner of the feminine gentility of those days; characterized by a certain state and dignity, rather than by the delicate, evanescent, and indescribable grace, which is now recognized as its indication. And never had Hester Prynne appeared more lady-like, in the antique interpretation of the term, than as she issued from the prison.

Those who had before known her, and had expected to behold her dimmed and obscured by a disastrous cloud, were astonished, and even startled, to perceive how her beauty shone out, and made a halo of the misfortune and ignominy in which she was enveloped. .. But the point which drew all eyes, and, as it were, transfigured the wearer,-so that both men and women, who had been familiarly acquainted with Hester Prynne, were now impressed as if they beheld her for the first time,-was that Scarlet Letter, so fantastically embroidered and illuminated upon her bosom. It had the effect of a spell, taking her out of the ordinary relations with humanity, and enclosing her in a sphere by herself.


---Nathaniel Hawthorne

Rainy Day

It’s cold and rainy inside and out today. In therapy I talk about my family—again, and my father--again. I feel distracted at work, not focusing on things that matter. My friend Liesl calls to say she is exhausted. Her mother is dying of cancer and there are so many doctors and so many appointments. Another friend is deciding whether to take a big job. It’s the top of her career but it means a move. Another friend is at the end of her divorce process---three years after many more years of finding out in painful layers that her husband had a secret life. Maybe it’s a rainy day for everyone. I want the sun to come back and I want my own joy and peace to return. I am wondering if I have to leave this relationship to find that sun again. I can barely breathe when I think about that.

Mind Body

Last week I met a man on the train to New York City. One of those “I hope he doesn’t try to talk to me” moments and then I noticed that he was reading a Kindle and I blurted out, “You have a Kindle!” So then all hope was lost for trying to stay cool and aloof and send “leave me alone” vibes. So Kindle always leads to, “What do you read/are you reading?” and an hour later we were talking about the mind-body connection and Candace Pert’s work on neurophysiology. Well, he was talking and I was taking notes.

I finished the book last night and in addition to making me want to try meditation again I really want to try not scaring myself to death all the time. I see—from this neurophysicist’s point of view-- what I am doing to my body when I terrorize myself. All thru John’s cancer and even now as I unpack and repack this relationship—I go straight to fear. That’s not new; it’s a lifelong habit. But what that adrenaline and coritisol are doing to my body. …well, I guess now I am interested in saving my body too. Yeah, I’m feeling like it’s time to take care of me.

This week I’m not sure where we are going or if we are going, but I am going forward in any case.

Golf Lesson

Golf Lesson

It’s the little things. Shifting my weight to my right foot. Not dropping my left shoulder. Leading with my hands. Trusting that I will hit the ball. Going for it. Staying focused. Laughing.

Sex Lesson

It’s the little things. Shifting my attention. Not worrying what he thinks. Loving my body. Loving his body. Trusting that it will happen. Going for it. Staying focused. Laughing.

Memorial Day

It’s been one of those perfect weekends. Weather. People, Relationships. Work.
It began with dinner out Friday with old and new friends. A conversation that flowed from theater and books to business and travel. Sex. Then Saturday began with a meeting and some planning for the summer. Sex. A day trip to Hudson New York. Looking for art for our apartment. Mexican Radio for dinner and a movie with Audrey Tatou. Sex. Sunday brought writing time and schoolwork for both of us. Lesson plans and thinking through creative projects and possibilities. Procrastination. And sex. Out to the movies to see “Sugar”, a surprise but powerful in the truth it told rather than the fantasy I wanted to be told. Home to ice cream and almost sex but really sleep. And today, Monday, began with a parade for him and website work for me. Then book shopping. Playing golf. and a shower a deux. Ice cream at McDonalds and yes, almost sex.

Again and Again

Take out the repetition
They all said.
I said, “No”.
But you repeat yourself,
Yes, I said, Yes, I do, I said, I know
I do.
But you have to pull this together, they said.
And again I remember Gloria at Joy’s grave
telling me to pull myself together,
And I thought, What’s the point
of death if we
pull ourselves together?
But of course, it’s for them that we must be
together.
To see it raggedy
unfinished, unformed, disconcerts; “breaks the contract”
Is that so bad?
This contract broke so long ago.
But you repeat yourself, he said again
“Yes” she echoed, “You’re repeating here, do you see that?”
I hear you, I repeated, I responded, I replied.

I tapped my pen and said,
This is like a set of boxes, you know, like a telescoping set of boxes, you know,
like inside each other?
You can get them at Pier One”
Glossy shiny blood red lacquered paper boxes.
Big red box, take off the lid
inside a red box, take off the lid
another red box, take off the lid
again red box, take off the lid, and then, finally
red box, small, smaller, smallest, take off the lid.
What’s inside?
A diamond ring? No

If this was a short story
Something would be in the box
But this is nonfiction.
And so there is nothing in the box,
and only the tiniest bit of nothing.
There is nothing inside the smallest, the last, the end of the boxes
You want there to be something inside that box, like a
diamond ring, car key, a rune stone, a plastic charm, even a folded bit of paper
Something, anything we can make meaning with.
There is nothing inside the smallest, the last, the end of the boxes.

“People are meaning making machines”, the trainer repeats,
tapping her pointer again at the sentence on the board.

So we insist there is something in
the last box or we leap:
“He was holding his orange juice and fell over and blood came out of his
mouth”,
I am telling this to a woman on the bus.
I tell the minister, “He was holding juice, orange juice and he kind of fell over and
blood came out of his mouth,
and to my new boyfriend,
“He was holding this juice and then like he fell over and blood was
everywhere.”

This is not how we make meaning.
This is meaning.
we don’t have to make it,
we just have to keep
Repeating, and repeating, and repeating, and repeating.

Perseveration, most beautiful word.
Er, er, er,
It sings its own songs
symptom of itself
tells its own story
But that’s the point,
they all died.
They died.

Like the boxes, they go on
opening
nothing but boxes
Repeating.
Take out the repetition?
I don’t think so.
Anxiety and fear encased in every word
Do you get it? What I’m trying to say?
You see now?
They died you know,
They all died.

New York City Day

Yesterday was a special day. I spent the day at The Met in New York. It was a day of friendship and love. My dear friend of 25 years—who has seen me through so much—and me of her too—was in New York for one day interviewing at The Met. I took the train—then walked to the Met...talked and talked between her interviews. A reminder that I had a life before and that I will have a life again. She reminds me that I am a writer and that I am loved. We talked about all the changes we have each been thru—all the growth from all the hard things and the hopes we both hold for dreams yet to be fulfilled. We talked about relationships and about John. She does not want me to hurt anymore. In the afternoon I walked back to Penn Station stopping in an out of stores, window shopping, running the perfume gauntlet at Saks, and buying a bright green quilted jacket at Orvis. A kind of green that surprised me but it is, now that I think of it, the green of new grass on a early summer day—one much like today. It is new growth and new life and the color of hope.

These Honeymoons

It’s all perspective and experience.

I talked to a friend today whose husband has ALS—Lou Gehrig’s Disease. It’s a horrible illness and a horrible death. I watched my brother die of ALS and the only possible gratitude was that he didn’t make the expected 18 months but rather died in a compassionate ten.

Talking to her we were exchanging “good news”: Her husband is at home and still able to do some work. John has passed one test and we get a breather until others begin. “This is our honeymoon” I said to her. “Yes”, she replied, “ours too.”

No one else would think these are places for laughter, gratitude or honeymoons, but for love in cancer or ALS or other serous illness they are exactly that. And just like any other honeymoon we break out the nice dinner, the candlelight and the pretty lingerie.

The Good News

Yesterday was John’s colonoscopy. We were at the hospital before 7am and he was done by 10. I was pleased that I was finally able to pray for acceptance no matter what the outcome might be and was able to pray to be present for him –and not just think about myself—though that was hard. The fear fantasies and scenarios of how this might unfold had me stuck in a pretty selfish place.

I left him in his room and got a beeper in the waiting room. It seemed like time flew and the beeper summed me to the recovery room. When I walked into an empty room I panicked fearful that they were planning to talk to us in private and I know what that means. But then he was rolled in—pretty drugged and dozy—and the nurses started reading from his chart. She had to say “No sign of cancer” three times before it registered that she was telling me this. I started to cry. I had not realized that I had been holding so tight. “No sign of cancer”.

For the rest of the day I kept saying to him, “So you’re going to live.” And he said, “and live with you.”

That was sweet.

The Prep

Everyone will tell you that “the prep” is the worst part of a colonoscopy. And they are right. John’s next one is Wednesday and he’s getting ready. And so am I.
While he is buying juice and Ducolax and limes (*see hint below) and beginning his fast, I am calling friends, writing lists and making deals with God.

His prep is physical and brutal. He has the emotions to manage as well. We don’t know what the odds are this time. I return over and over in my imagination to a year ago when his routine colonoscopy turned into cancer and spun us in circles.

My prep involves lists of questions, packing for a day of hospital waiting rooms, trying to stay positive and hopeful and dissolving into fear.

We survived this year of surgery, chemo, caregiving and living on hold. We’ve had a few months of peace and taking the tiniest steps toward having a future. But now the fear has returned. In a few more days we’ll know. I want to stop time and speed it up and yes, I alternate deal making with surrender. I ask for favors I don’t deserve from God and every family member we have on the other side.

Limes: I’m told this is the Katie Couric tip: when drinking the lousy flavored colon prep drink you should suck on a lime before and after each big swallow. The nasty flavor will never reach your taste buds and so you’ll not experience the aversion or the gagging that can come when you get to the last bottle.