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.

Everybody has Something

This week L’s mother’s cancer returned, and B’s stomach problem turned out to be something much more serous than indigestion. J’s dad was diagnosed with early-onset Alzheimer’s—and he’s only 53. G’s daughter—so pretty and so smart --has a serious mental illness and M’s daughter now has confirmation that her tremor is Parkinson’s. K’s granddaughter is dying and A’s sister has gone out again—a relapse after being sober ten months. D’s husband left her and he’s not coming back.

Everybody has something. So many have lost jobs, can’t make the rent, and are afraid, scared and suffering. It is humbling and it is hard.

Again, Again

Last night in class my heart began to pound. May 5. John’s colonoscopy is in eight days. What if? If the news is bad what will we do? Surgery again? Chemo again? Hospital rooms again and again?

Last year it was all new. We didn’t know what was coming so even though it was hard we just kept moving expecting each next step to make things better. I didn’t know what was coming. I knew about hospital rooms and ICU and sleeping in chairs from taking care of my family all those years when they were dying. But cancer was new and chemo was new, and we kept at it. I didn’t know how hard it could get.

But now I do. Hospital again? Chemo again? And the scariest thought: If his cancer has come back it means more than surgery and treatment. It means we won’t get the time together we dreamed of. It means he will die.

I tell myself that even if that is the outcome, even if that is his and our fate, that I will be OK. I have supports and resources and people that I did not have years ago. But today I do not want resources and supports and people. I want him in my life. I want more time to love him.

Monday

Yesterday we did a cancer walk. It was a fundraiser and I walked with old and new friends. John walked nearby, conversations moving in and out of school, work, health, movies. It was a marker. We did this walk a year ago. It was a different walk this year and we are different a year later.

Now the Monday morning feeling. A new week. Refreshed. Bringing new ideas and new resolutions to this next six days. But the fear in the belly is there too. Him, me, work, them, money, doctors, and more work. The constant feeling of not getting enough done, yet knowing that I do so much. Surrender comes to me. Surrender to God, to process, to faith.

Ages ago someone said to me, “God’s will is what is.” and “IF you want to know God’s will leave your house, start walking and when you hit a wall turn left.” As if we even get to decide God’s will.

The challenge now is to believe in a loving God. To believe I am cared for. That all will be well, no matter what.

Bull Durham: Why Women Love This Movie

The past couple of nights I have been watching Bull Durham. This is the movie from 1988 with Kevin Costner playing an aging catcher in the minor leagues. This is a movie that appears to be about baseball life with its travails and hopes and the desperate desires of men who want to play ball for a living. It is seemingly a men’s movie with all the swearing and ass slapping and drinking and real life baseball lore. But no, this really is THE all time best chick flick.

Yes, we love Kevin Costner from the first moment he arrives in the locker room wearing his navy blazer, rumpled white shirt and the khakis that are the perfect shade of tan with a hint of olive. He’s a manly man who in the first 20 minutes gives the fabulous, if too artful, monologue about his beliefs which includes, “I believe in the cock, the pussy,, the small of a woman’s back…that the novels of Susan Sontag are self-indulgent, overrated crap”, and which ends with his belief in “long, slow, deep, soft, wet kisses that last three days”.

Yes! You had us at “long, slow and deep”—and yes, at the Susan Sontag part too.

But there is a later scene that truly outs women for what they truly want.
“Do you want to dance?” Sarandon asks Costner, sitting in the kitchen late at night. He says yes, but surprises her by not dancing but instead by sweeping all the food and dishes off the kitchen table onto the floor. He spins Sarandon onto that now empty table and they go at it rolling and clutching.

Oh, that’s part of it. We want a man to want us that much; we want a man who wants to make love a second time so much that he goes for it on the kitchen table. We do want that kind of passion in our lives. But, there is something else in this scene that truly makes this a women’s dream come true. What most women truly desire is not what Costner does, but what Sarandon does NOT do. As all of her dishes and the leftover food crash onto the floor Sarandon allows herself to be swept onto that table instead of diving for a broom, or a dish cloth or saying to her lover, “Hold on just a second, I’ll clean this up and then meet you in the bedroom.”

No, she is in the moment and desires this man and this sex more than she desires a clean floor or neat kitchen. She wants the rapture of this man and his body even with cereal and milk oozing under the fridge. And she is not saying, “Oh dear God that was my mother’s china bowl.” Nope, she’s on that table fucking her brains out.

Oh, to be that kind of woman. We assume the power is in the man, that to be taken that way would free us. But what we see in Bull Durham is a woman who CAN be taken. She is not a woman thinking, “When did we last wash these sheets?” while a man is dutifully going down on her.

Oh, we do wish for a partner to love us with such sweet abandon, but Sarandon, in Bull Durham, shows us a woman who can abandon herself.

Ordinary Time

In the Catholic Church liturgical calendar there is an acknowledgment of “ordinary Time”. This is the time between holidays and the time that is not Christmas or Easter or Good Friday or Advent.

It feels like that here in the land of love and cancer too. It’s not chemo or blood tests or attorneys. It’s not exhilaration or tragedy. This day and this week are filled with grocery shopping, golf lessons, parent’s night, and girl friends. I am picking up library books, allergy medicine, dry cleaning and avocados.

Having been in cancer land so much this year I have to stop and remind myself that this ordinary time is the real holiday, the true luxury, the blessing and the gift.

Colonoscopy

Yesterday it hit me. The nervousness I feel is because April is almost at an end and May is almost here. May has seemed far off until now. And May scares me because we both have colonoscopies in May. First John’s and then mine. I’m scared of them both. I run through scenarios: If his is bad do I go ahead with mine? If his is OK and I go for mine what if I’m not OK? If his is OK do I skip mine to give us a year of no trauma? If his is bad and then mine is bad too do we end up in hospice together? So much for one day at a time.

Golf Lesson

Yesterday I had a golf lesson with the course pro. A nice guy who hit that perfect middle between “guy’s guy” and “ladies man”. We broke down my swing into slow motion. I formed internal images of what I want and he gave me several swing exercises to practice. Exercises that give me feedback. I can hear and feel if I am doing it right. My body will learn and my head will follow.

Makes me wish for the same in new relationship skills. Bring the body and the mind will follow. Change your behavior and your thinking will align. Breakdown the new skill into baby steps and master each tiny change. One day I will simply swing and hit the ball high and far, and someday I will say, “No”, “Yes” or “Here is what will work best for me.”

Awkward Sex

Oh, and then there are those moments in a relationship when something happens and sex is awkward. Something doesn’t work or you want something the other can’t do or the other one wants something you’re not sure, or you both try a new trick and it bombs.

This is the turning point, the critical moment when you know whether you are a couple or not. Do you laugh? Yes, with each other not at. Do you cry? Maybe, both of you. Do you get mad, yes that happens too and the words come fast and hopefully not too many.

I talk to myself. And I talk to him. “This is us” I say. “This is our sex life not anyone else’s; we get to make the rules.” “This is us” he says. And we hold each other.

Baseball is Back

Baseball season is here and it adds another layer to our lives. We both love the game and are able to teach each other. He knows more about now and I know more about then. I love the history and he loves the Yankees. It’s a source of humor, anger, passion and of competition. It’s a source of metaphors too—many of them sexual --which makes it even more fun. Here’s to getting to third base and charging home with a scream and a cheer!

The All Nighter

Maybe we needed to clear the air. Maybe it’s the frustration of the legal, financial and medical all colliding like three cold fronts. Maybe it’s the dynamic of a relationship that needs a blow-out the way the earth needs a storm to clear and rebalance nature.
Last night was an all-nighter, the blow-out and the storm.

Today we woke to warm weather and partly cloudy changing to warm sun.
We are changed for good or ill. Painful things were said. Tender things were cried.
We said the unsaid and the unsayable.
We go on.

Girlfriends

The saving grace yesterday was girlfriends. The women with whom I can be completely honest and who I can safely show my scared heart and messy mind are treasures in my life. I talked to one friend on the phone and had dinner with another. We laughed at our fears and fantasies and helped each other to exaggerate the scenes but then also counseled each other off the ledge.

“We are only as sick as our secrets” we say in AA and a grief shared in halved while a joy shared is doubled. I saw that come true yesterday moaning, whining, laughing and saying, “…there’s one more thing…” and telling all.

How lucky am I to have friends like this?

Intuition

How do I tell the difference between intuition and fear? A lot of fears have arisen in me around John and his life. Is it my old fear? Projection? Hearing so much about people with cancer yesterday? Knowing that he is capable of telling lies? My own thought pattern of doubt? This is a crummy place to be and I want it to be different. The truth is that I want me to be different. I want peace for myself and peace in my own heart more than I want to be with him.

Trust

Last week I had this thought:
When someone has cheated on you it’s very hard to trust again.
But it’s also true that when someone has cheated with you it’s also hard to trust again.

But today I had this thought:
(and maybe Easter was part of my shift)
I don’t have to trust him; I only have to trust God.

We Are Easter People

I have an Easter memory from years ago. I was living in Washington, DC, and that year was a low point in my life. My older sister had recently died and both of my brothers were seriously ill; my best friend was leaving town, and on top of that I was questioning my work.

In my journal that April I wrote, “Am I depressed?” When I read those pages now I laugh and shake my head. “Depressed?” That I even had to ask. In that long year I thought I’d never laugh again, just as I thought I’d never again feel love, the joy of easy friendship, or the satisfaction of good work.

I went to church that Easter out of both habit and desperation. I had grown up in a church going family. It was what we did. And so to honor the family that I was losing I went. I chose a big downtown church for Easter services—one with hundreds in the congregation--not daring to visit a smaller church where I might have to speak to people or be embarrassed by my own tears. I wanted the paradoxical safety and anonymity of being in a crowd.

The minister that Easter Sunday said many things that I don’t remember but one sentence has stayed with me all these years. He said, “We live in a Good Friday world…” That I understood. A Good Friday world is a world full of suffering, questioning, unfairness, trouble, mistakes, hurts, losses and grief. That was certainly confirmation of my life that day. “But”, he continued, “We are Easter people.” Those words stopped me cold. I was stunned to be reminded that painful morning that there was something other than what I was feeling.

My life was not instantly transformed; his words did not change the course of my brothers’ illness; nor give me answers to my questions. But the idea of being “Easter people” gave me a pause in my grief and the teeniest hope that there really did exist something other than pain.

Today all of the things that hurt so much back then have changed. As my brothers died friends came forward to help. I began to write and publish. Months later I fell in love and moved to upstate New York where a new life began with new friends, new work and yes, of course, new problems.

What strikes me now is that this believing in “Easter” in the midst of “Good Friday” is as much about being an American as it is about being Christian. Americans are, by character, a people of reinvention. There is an extra layer of intention that we bring to “new life” that isn’t true even in other predominately Christian cultures. As Americans we are future oriented, we look forward not back, and we are, for the most part, a culture of optimistic, hopeful people.

The gift from that Easter service many years ago was the reminder that we are, by religion or culture, a people who believe in possibility. When our hearts are shattered we are sometimes shocked to discover that there is joy as well as pain inside. Out of the ashes of our mistakes, from our defeats and even our despair, we rise again in better lives.

His Mother Asks

Visiting John’s mother last week and while he was in the kitchen making coffee his mother turned to me and said, “Do you love him?”

We’ve been together a couple of years and I have known her for more than a year. She’s seen us together in many settings and has, I know, talked to him about me. Then this question, “Do you love him?”

It is a mother asking, “Do you love my boy?” and “Are you going to be good for him?” and “Will you take care of him?”

It was also, and I heard this, a mother saying, “Don’t hurt my boy.”

Thinking about Death

I kill John over and over. Even before he had cancer, and especially now that he does, I imagine his death. I am imagining him being taken away from me. I am imagining losing him. To be fair, I have always done this—imagined that people I love will die. It’s not without grounds; all of my family has died and I watched each one go, some fast, some slow. Now, having this long fought for love, there is a special cruelty in his cancer. There are real grounds for my fear. But I also know that I can lose what is here and what is now by constantly living in his dying.

On our vacation to Florida I read the book, “Beginner’s Greek” by James Collins and in it I discovered this line that I cherish as a new mantra:

“For the sake of goodness and love, man shall grant death no dominion over his thoughts.”

It is from “The Magic Mountain”, by Thomas Mann.

The Past Creates Today's fear

Yesterday in therapy I talked about this fear I have of somehow being tricked in this relationship. I know my fears of abandonment and the long standing sense of defectiveness that have been part of me for so long, but as we talked I kept coming up with this word “tricked”. It didn’t quite fit until I began to talk about how my mother could change on a dime, how her addiction to Dexedrine made her into two people: the 9 to 9 “perfect mother”…and then the Medea-ish monster that slowly appeared after 9pm as the Dexedrine wore off. Medea is the right persona. Like her, my mother was so angry at my father that she would hurt her children out of her own grief and fury. What I now understand is that as a kid it felt like a trick—someone had tricked me—I had a good, super-engaged and active, manic mother part of the day and at night the monster appeared and my better mother was gone.

The lasting piece is that I have come to not just expect but to anticipate and even strategize to deal with the other. I do this with John too. Sure he says he loves me, yes he wants to marry me, yes all the words and behaviors are there, but that younger part of me knows—she is just sure that she knows—he will trick me. One day I’ll come home to an ice cold man or one day he will just not come home.

It is not lost on me that this is also what his wife did experience. The loss of her seemingly perfect husband and seemingly perfect marriage must seem like the cruelest, most senseless trick. In my struggle to free myself from my old beliefs I also pray for her as she lives thru this reality.

Chop Wood Carry Water

There is an old Zen saying:

Before enlightenment: Chop wood, carry water.
After enlightenment: Chop wood, carry water.

It applies to cancer too:

Before cancer: Chop wood, carry water, buy groceries, pay bills, make love.
After cancer: Chop wood, carry water, buy groceries, pay bills, make love.

Before and after cancer there are bills to pay and water on the sink, socks in the dryer, deadlines, aches, pains, worries, bad TV, great movies, Facebook, missed birthdays, cranky coworkers, amazing friends, too much candy, not enough water, and a poem every day.

Projection

Today a lesson in projection.
I seem to have to learn this over and over but here it is again.
Yesterday I was ambivalent; I kept a secret; I was dishonest.
Last evening I was certain that he was ambivalent; he seemed evasive and I wondered, “Is he really telling me the truth?”
That of course raddled me. I was sure he was pulling away, his commitments uncertain and feelings unclear.
Then I felt needy and insecure, could not be comforted.
So I began to pull away.
Today as I dissected it I saw that it all began with my behavior.
I took my discomfort with my own actions and I
projected it all onto him.
Then watching that movie I distressed myself further.
Note to me: I made myself miserable. Don’t do this again.

Return from Vacation

Home from vacation. Sunshine. Wearing white. Wearing pastel. Wearing sleeveless shirts and colorful rubber flip flops. Each day I texted my beach report to my pal, Leslie, a fellow mermaid. The ocean changes color daily and has different moods as well. As mer-gals we treasure this variation.

The trip was good. A visit with John’s mother and sister. Fabulous food. Feeling free to be affectionate in front of family. Waking to the sound of mourning doves and bird song. Our own birdsong at morning.

Home now to rain and cooler weather. A day alone for laundry, library, dry cleaner and drugstore. A few groceries for our own meals again.

While we were away a friend died. He had been diagnosed with lung cancer a year ago and made it this far. Two weeks ago at John’s oncology check up we ran into Tony picking up his medications from his oncologist. I introduced the two men and we laughed about cancer. Tony’s memorial is today at five.

Body and Brain

I’m reading a wonderful book called, “Proust Was A Neuroscientist” by Jonah Leher. He’s describing how artists—in different fields—anticipated and sometimes better explored what we have come to know now from neuroscience.

He writes about what Walt Whitman “discovered”—that our bodies have or are our brains—feelings generated by the body not just the brain, “the mind is embodied.” What came to be though of as Whitman’s bawdiness was in fact his discovery and delight that our body thinks and our minds feel.

Whitman’s discovery and celebration was so important because it followed years of Descartian thinking—really thinking. Descartes had divided being into two distinct substances: a holy soul and a mortal carcass. The soul or mind was reason and thinking, the body just carried that soul around. Descartes thinking led then—here’s where it gets weird—to Phrenology—studying the skull. The worship of the brain became study of the bone around it. It’s amazing now to realize how much medical attention, study, research and, yes, medical treatment was based on phrenology.

Yes, we laugh and roll our eyes. But wait. We think that study of the skull makes no sense but someday we’ll look back and have the same embarrassed look when we think about PET scans and CAT scans, “Look, they thought the physical structure of the brain was evidence and prescriptive..how odd and dumb they (we) were.”

Mind and body, brain and soul. Back and forth we go, trying to understand these beings that we are. Spiritual beings trying to live human lives. Human beings carrying around and caring for our souls.

Tomorrow I’m taking brain and body, mind and soul on vacation. I need rest for them all. And John too. Off we go to Florida, sunlight and the dearest god of respite I know: the ocean and the beach.

We’ll be back in seven days.

This story of love in the time of cancer will continue then.

My Colonoscopy

Two months ago at my annual physical my doctor asked again if I remembered my last colonoscopy. I’ve been stalling her for years but this time she didn’t play. “Since we’re not sure”, she said, “we’ll get you in for a screening colonoscopy now and go from there.” I left her office with the referral, and that afternoon the gastroenterology practice called to schedule the visit.

I called them back twice in January and also in February to change the date. On the last call the receptionist said, “This is for a work related problem?” And I knew that people probably change this appointment all the time and I wasn’t going to get to change it again. So I made the date.

The appointment after all wasn’t for the colonoscopy but just for the visit where they do a pretend physical (all your clothes are on) and sign you up for the big day.

I went last week and the PA who saw me was very nice. I explained that I had been to their office before—This was the scene of the crime in our love and cancer life—the very same office where I accompanied John a year ago for his routine colonoscopy which became: surgeon, CAT scan, cancer, surgery, hospital, ambulating, pain, gas, agony, chemo, hair loss, blood tests, neuropathy, scars, fatigue, fear, 5-FU, home infusion, visiting nurses, crazy schedules, waiting rooms, tears, casseroles, vitamins, walking, Babar on the couch wearing a chemo pump to match John’s, and more love and sex than either of us would have ever predicted. I swear that last part is what got him through this year and I know that is what helped me survive as well.

So when the Gastro-PA asked me if I had a doctor that I preferred I said, “Doctor Samuels”, the man who did John’s colonoscopy. I decided to not be superstitious, and I am comforted in a small way when I recall how he managed his facial expressions as he met us in the curtained room and began with a small smile and the words, “”Well, we have a problem.”

So my colonoscopy is scheduled for May. I was able to buy them off that much time. But it is time. If my routine visit becomes something resembling John’s I don’t know what I’ll do. Having seen colon cancer and its treatment up close I can’t say I’d go through it. Save the lectures and the platitudes. Let’s just hope I don’t have to argue with you in May.

My New York City Day

I spent yesterday in New York City. The beautiful train ride, an orgy of magazine reading, a quiet well-behaved seat mate, all made the start of my day good. I splurged on a taxi to SoHo, visited the Varda Store—a shrine to timeless Italian design (one pair for summer); Kate’s Paperie—a sensual and textural wonder of paper (two packages of envelopes) and then another taxi to The Frick—one of the most elegant and wonderful small museums. The fountain room is so soothing, and I always do this kind of double take looking at some of the pieces on display: “Oh my God, that’s a real El Greco.”
In that small brownstone are works of art that are ubiquitous as images in Art History 101 so I have to remind myself that even though I have “seen” it a million times that this—this one at the Frick—is the Real Thing.

The downsides to this day? The worst is running the perfume gauntlet at Saks. The terror of the aggressive perfume sample ladies and their counterparts at cosmetic counters. It is fearful even to make eye contact with anyone of the first floor at Saks. A mere acknowledgement can result is being dragged to the counter and being re-made—even while you are sputtering, “Oh, no thanks, just shopping.”

The other is the “bourgeois-garde” of the folks who work in museums. In their desperate feeling attempt to declare their avant-garde status they all look the same: same black plastic eye-glasses, same eye brow shaping (male and female), same MOMA watch, same black clothes now—because “Color is Back” (says Barneys)—worn ironically. I want to whisper, “You look the same; you have lost the unique aesthetic you are attempting to convince us that you have.” These days someone who works in a museum and wears a pastel twin set and real pearls will be the iconoclast.

The other challenge of my city day was to remind myself that I can have a life—and an aesthetic—with or without John. It feels important these days to find ways to remember that. To reclaim a self and a separateness. Just in case we stay together and just in case we come apart.

Imus Cancer Sex

Radio personality Don Imus is diagnosed with prostate cancer. In the newspaper story covering Imus announcement it says, “He noted that doctors seemed reluctant to talk about one of his biggest worries: What the treatment will mean for his sex life.”

No they are not talking about cancer’s impact on one’s sex life because it is taboo. It is a crazy factor across the board in Cancerland that there is no frank discussion about sex and sexuality. Yes there are the euphemistic pamphlets, lots of mentions of intimacy and the dreaded “cuddling” and even advice to “talk to your partner.” But if your doctor and medical team will not talk frankly to you about sex what the heck will that conversation with your partner include? “Was that cuddle good for you?”

In many ways Cancerland is stuck in the 1950’s. I remember the similar pamphlets called “You’re a Young Lady Now” and “Growing Up and Liking It.” One was pink and one was lavender. They were ostensibly about menstruation and sexuality but no body parts were ever shown or discussed. The closest they came was a line drawing of flowery fallopian tubes that looked like exotic plants with tendrils. But they never showed you where these were in the body or God forbid show any relationship to the vagina or the outside world.

Fifty years later when you get colon or breast or prostate cancer you are given more flaccid, pastel booklets advising talking, intimacy and cuddling. Even the feistiest advocates want to talk about empowerment and baldness but never orgasms or fellatio.

The implication is that once you enter Cancerland you won’t care about or like sex anymore. But that’s so backward. When you have cancer life becomes even more precious and sex is nature’s way of screaming at the top of her lungs, “I want to live.”

This is why I started this blog. Someone has to talk about love and sex in the time of cancer. Step up folks and look your doctor in the eye, give the pamphlet back and ask the patient advocate to stop blushing and fumbling. The next time you are at chemo say very loudly, “Is anyone here having sex?”

Bracketology

Well, I have learned more about basketball in one year than I learned as the captain of my Junior High team. (Those were girl’s rules of course and we wore “pinnies” not uniforms.) A year ago I didn’t know what a bracket was and tonight I watched the assignment show waiting to see where Pitt and Siena land. Tomorrow I’ll do my own bracket and place some serious and sexy bets against John’s picks. With these kinds of bets it’s as much fun to win as it is to lose.

Pi Day

Let the circle be unbroken. It’s Pi Day. The day that we celebrate the word’s most widely known mathematical constant. Let them eat pie. But no. Today after going round and round and round with John on “Where are we going?” and the usual fight about ratios in this relationship, I am dizzy and wound down. Forget the pie. I’m eating a pint of ice cream!

Friday the 13th

Sunshine. Cold. Hints of Spring about to come or soon to come. Vacation soon and that means more sunshine, beach, family—his. A reminder of my family long gone. How strange it is to have no family and to borrow someone else’s. It feels like that. A bit of a dance. We are not kids. His mother is not my in-law though we have more in common than sisters it turns out. There is one of the funny things about being older.

Work is hard now. Recession real. Always the hint of a phone call or lab report that could derail us at any moment. Lately I have worried about my health not his. That’s a first and maybe having seen up close-- once again --what illness can do I don’t want to go back there?

I’m glad it’s Friday. March is a tease. Never the right coat. Come weekend come.

Breasts

Straight men really like them. Gay men too, probably, having been mothered by women who have them. Even with all the supposed openness and dialog about sexuality I think most women don’t really get the breast thing for men. We get it on an intuitive level and maybe that’s what the Pink Terror is about; why breast cancer is the scariest even though it’s not the one that kills most women. It’s about loss of power. Since the sixth grade when boys looked for the telltale bra straps and somehow just that was enough to rock them rock hard. What we have done though in our political correctness is silence men on their fear of a woman losing her breasts. Men are supposed to say, “Oh honey it doesn’t matter; that’s not why I love you; I’ll love you with or without your breasts.” But inside they are screaming, “Fuck no, I want my breasts.” (Because they do think they are theirs.) For all our talking about this we still don’t get it. Men go to bars where women don’t wear shirts. They look at magazines and have perfected ways to sneak a sidelong glance at the slightest curve of breast tissue. We laugh at that but there is more to this than the supposed adolescent behavior. It’s primal, primordial maybe, but it’s real.

Frankenstein

Today is the anniversary of Frankenstein by Mary Shelley. It’s a scary story in many ways. In addition to the monster and the implications for medicine and science there is also the story of Mrs. Shelley herself. Wife of poet Percy Blythe Shelley she ran herself ragged, competed, depended and sacrificed herself in order to promote her husband's work. She left this majestic book behind. A best seller in 1816 and rarely out of print since, Frankenstein is probably the most beautifully written of all the scary books.

The messages of Shelley’s monster classic are very much a part of our lives now. The questions that she raised so eloquently: What is life? What does it mean to be human? Where will science lead us? are as perplexing now as they were at the dawn of the scientific era. The issue of scientific intrusion into life is at the heart of today’s science news. We proclaim new ways to overcome disability, disease and death, but at what cost and to what limit?

When we hear the name, Frankenstein, a common first response is the image of the lumbering, rivetheaded monster immortalized by Boris Karloff. We picture the creature assembled in the laboratory from body parts, a man so ugly that humans fainted at the sight of him. This common misidentification of Frankenstein tells us how easily we tend to blame the victim and how often we overlook the bad guy. What we so often forget is that in Mary Shelley’s story, the large, disfigured man is simply “The Creature”. Frankenstein is not this patient, the product of medicine and technology, but rather the scientist: Dr. Victor Frankenstein.

Friends in the Time of Love and Cancer

Oh, if I could only remember to get a reality check before my imagination kills me first.

Twice this weekend a conversation with a gal pal saved me.

My friend Aletha is in a similar relationship. She and her beau are both in the process of separation legalities but moving ahead with their lives. After a night of torment I finally ask her, “Does the limbo bother you?” and it pours out. We end by laughing and speculating on when and how to wear our scarlet letters. I chose one of red chenille (an athlete’s letter) but am saving up for something bejeweled. Hester Prynne was a Puritan. I am not.


Saturday John became very dizzy at dinner. We cancelled the Netflix and crashed on the couch. As I sat there I imagined brain tumor, brain cancer, aneurysm or stroke. I saw my life slip away along with his. Fear, frustration, panic. The next day I talked to my pal Leslie and she tells me she was dizzy for two days—an inner ear infection—we all had the same cold.

I am saved by my friends and saved by talking.

Thomas Merton Affair

It was only a year ago that I learned about Thomas Merton’s affair. He was in his 40’s, already a writer and spiritual celebrity of sorts. He was a cloistered monk at Gethsemane in Kentucky. He had written Seven Story Mountain and other books. He was celibate and spiritual and married to the Catholic Church.

Then hospitalized for back problems he fell in love with a nurse. And she with him. They resisted, connected, pulled back, cried, committed, talked, broke up, tried again and loved each other. The relationship was consummated in a garden near the hospital and again near the Abbey. Some others knew and some sort of knew and others didn’t know at all.

And then the Master of the Abbey got wind, confronted Merton, “How could you?” and he had to choose. This amazing man of God didn’t have an easy time. He saw her again, quit again, cried, begged, wrote about it, tossed and turned, left only to come back and finally chose the Church and his life of monasticism and writing over her. But not easy, not sanely. He was never the same.

Two years later—allowed to travel to Asia—perhaps a consolation from his Abbott? Merton made one of his greatest speeches and then died suddenly in an accidental electrocution. We know from his journals that he was still grieving the loss of his great love. His pain was relieved.

But I have always wondered about “Her”. Who told her? How did she grieve? She lost him and then lost him again. Did she know of his despair? And did she know his prayer of faith and doubt?

It helps me to know that even Thomas Merton was never Thomas Merton.

Limbo

It is limbo in every way. Limbo in weather and seasonal shifts. Daylight shifts. Weather cold. More sunshine. Hope of Spring. It is limbo in my love life. Doing taxes and feeling married. Planning finances and feeling single. Doing the relationship and feeling unsure. At work each day’s mail shifts my mood. Enough money. Not enough money. We can grow. We will sink. Living in a kaleidoscope. In my spiritual life I see God clearly and then suddenly I’m alone and it’s cold out. I know I am loved and then suddenly I am punished. In old Catholic limbo the unbaptised babies waited for prayers and indulgences. In this limbo I offer my own prayers. A light unto my feet. Baby steps. Aching heart. Help me. Please. Thank you.

Thomas Merton's Prayer

My Lord God,

I have no idea where I am going. I do not see the road ahead of me. I cannot know for certain where it will end. Nor do I really know myself, and the fact that I think I am following your will does not mean that I am actually doing so. But I believe that the desire to please you does in fact please you. And I hope that I will never do anything apart from that desire. And I know that, if I do this, you will lead me by the right road, though I may know nothing about it. Therefore I will trust you always though I may seem to be lost and in the shadows of death. I will not fear, for you are ever with me, and you will never leave me to face my perils alone.

Thomas Merton
Thoughts in Solitude, p. 83

OnCologist: We Begin Again

Today John returns to the oncologist. The long break seemed to fly by and now we return this afternoon to the cancer center. I just remembered to grab the blue cancer notebook and put it in my purse for today’s appointment. I open it to see what I had written last and it was December 22 when the chemo port was removed. Today’s appointment is for blood work and a consultation with the oncologist. It is the start of looking for the cancer marker in John’s blood, a sign that any cancer may be present. We have had a nice break from this cancer world and we have moved ahead as a couple. Now a new phase. We begin again.

A Friend Dies

One of John’s friends has died. He also had cancer and I met him in that process. Two couples at chemo. His more advanced. His death predicted and delayed. His wife tired from the getting ready and then more waiting. On the weekend he had gone into hospice. Sunday he died. The sharp difference between “he is dying” and “he is dead”. Now an obituary, now a body, now different kinds of words and prayers. I am sad for his wife and his family. Sad for John to see this man he knows die. To see up close this reminder that this is what cancer does. And for me? Sad too and scared.

The Cancer Card

Yesterday, in a business setting, a woman, a complete stranger, said to me, “I’m a three time breast cancer survivor.”

All day I thought about that and wondered at her need to describe herself that way. I don’t know if she’s married, a mom, has cats, belongs to the Libertarian party, hates the sound of chalk on a blackboard but I know about her breasts and her health.

What I also know is that this experience has so colored her life that it has become her identity. That seems as great a tragedy as the surgeries and treatments she has been through.

Many years ago a therapist trying to help me with the thoughts and behaviors that kept me stuck, said to me, “Play another card.” She explained that we are all dealt a hand of cards--maybe 7 to ten cards--good stuff, hard stuff. But she said some people just play the same card over and over. “Look at your hand”, she said, “and play another card.”

I wanted to say that to the woman—whose name I don’t know but who believes that the most important thing about her is breast cancer. She cannot stop playing the cancer card. I want to say to her, “Please, for the sake of your life, play another card.”

Ring Thing

We are looking at rings. Commitment? Engagement? Promises? It raises all kinds of questions. Am I too old for this? Not old enough? Can a woman in her fifties still get engaged? Is engaged better than married? (I think so) Am I doing this for myself or for other people? (Hmmm not totally clear) Who are those other people? (Oh, I see.) If there were no “other people” would I still want this? Want him?

My Husband

Today is my husband’s birthday. I send a text and leave a message. I know this will be a hard day for him. It’s a “special” birthday so he is facing age, work, making a new life and loss of love. I walk a fine line within myself. I caused him pain. I am the loss. I broke his heart. And he is an adult. It was a marriage of two. We tried. Could I have tried harder? Could he have tried more? Could we have come back?

How strange it is to be in this relationship looking at that one. How strange to ache for his broken heart while wondering if mine is next. How much it makes me wonder if I know what I want.

Facing Fear

It’s Monday. Like many Mondays this one comes with fear. Not overwhelming for which I am grateful, but fear none the less. Monday fear is: the weekend is over and I am thrust back into the world. I fear the work week unrolling before me. Can I do it? Will I be found out? All my ideas of myself are tested. Do I do enough? Do I try to do too much?
On Mondays I am also thrust into a different view of this relationship. Friday to Sunday we are together or making plans or talking as “we”. But on Monday he is him and I am me. I wonder if the we is real. Have I succumbed to fantasy? Am I expecting too much? Or not enough? On Mondays I wonder if there will be a Monday in the future when I will wake up alone and start my week. Will I be sad? Or happier?

I decided this morning that I will not think about him today. It’s just too hard on Mondays. At the gym I began to catch each “him” thought and toss it away like a ball. Whoops, I caught one but then Whoosh, I toss it away like a kid playing hot potato.

At the office I am preparing for my class and I read an essay by Erica Jong about writing. A Monday gift buried there. She writes this:

“All the good things that have happened to me in the last several years have come, without exception, from a willingness to change, to risk the unknown, to do the very things I feared the most. Every poem and every page of fiction I have written has been written with anxiety, occasionally panic, always uncertainty about its reception. Every life decision I have made—from changing jobs, to changing partners, to changing homes—has been taken with trepidation. I have not ceased being fearful, but I have ceased to let fear control me. I have accepted fear as part of my life, specifically the fear of change, the fear of the unknown and I have gone ahead despite the pounding in the heart that says: turn back, you’ll die if you venture too far.”

Social Life

Last night we had dinner at the home of a woman I’ve known a long time. We are writing friends and fashion friends and ships-passing-in-the-much-too-busy-lives friends. I was expecting to be part of a large gathering but it turned out to be three couples. The other couples were married 10, 20 and 37 years. I worried about the “and you guys…?” question. But it never came. We speak of our experiences apart and together. ‘Have you been to London?” We both say yes. But we were not there together. That part of our life builds more slowly. We talk about movies and plays and other vacations and the yes means yes, together. Our social life grows and we become a couple. Then we drive home and dissect the evening. That is the real fun of being a couple.

The Dry Cleaning

Today in our caregiving group we were talking about what to do when someone asks, “How can I help?” Often the caregiver is so immersed in the day to day of caregiving that they can’t see what someone else could do to help.

One woman told the group that after offering help many times to her good friend: “Can I do the laundry? Can I cook something for you? Can I go to the drugstore?” Finally the friend said, I don’t know how to print something off my computer, can you do that?” It reminded me of the time in my life---years ago—when I was taking care of my brothers…both older than me and both very ill. They were dying at the same time. They lived in Pittsburgh and I lived in Baltimore. I would fly to Pittsburgh on Fridays and do laundry, go to hospitals, meet doctors and nurses and patch it together and fly home Sunday or Monday. I thought I had it all together even though it was hard. I was working full time and at work people were saying things like, “Isn’t she amazing” and “How calm she is doing all this.”

That was until the Monday I flew home from Pittsburgh and went to my closet to dress for work and there were no clean clothes. All my work clothes were at the dry cleaner or in the car to be taken to the dry cleaner. That was the day I lost it. Sobbing. Hysterical. On the floor. Gasping for breath. I managed to call a friend and between sobs choked out he words, “clothes” “dry cleaner” and “can’t do this.”

That friend came to my house. She brought me a clean shirt and blazer and she took the dry cleaning tickets and my bag of dirty clothes. For the rest of that summer she took care of the dry cleaning. Just that. The dry cleaning. That was the task that broke me and that was the help that saved me.

It’s the seemingly small stuff. It will be something different for each caregiver. So probe and watch. Then figure out how you can help.

After Making Love

Exquisite pleasure. And pain. The act itself. And the aftermath. Being filled. Seeing his pleasure. Creating it. Making it. Taking it all. Doubts set aside. Then the aching. Soreness. Ointment. The burning. Stumbling into pajamas. Hoping for sleep. Lists undone. Work still on the desk. Smiling.

After Making Love

Exquisite pleasure. And pain. The act itself. And the aftermath. Being filled. Seeing his pleasure. Creating it. Making it. Taking it all. Doubts set aside. Then the aching. Soreness. Ointment. The burning. Stumbling into pajamas. Hoping for sleep. Lists undone. Work still on the desk. Smiling.

Long Weekend

We are back from our long weekend. I must remember this. I must. Being away—even for just a few days—is such good medicine. For my heart, for my head, for my body. Last week I was running myself into the ground. Working and still sick. Finally four days away and sleeping, walking, laughing and nothing that HAD to be done. I know this is good but I forget. Or I convince myself that I can’t afford to go away, that I cannot leave the office. But I can. I have to change the way I think. But maybe I have to change my behavior and make myself go even when I think I can’t. God knows it’s been said: God rested on the 7th day, books on sharpening the saw, putting on your own oxygen mask before attending to others. I know. I know. But today, being rested, happy and the real gift—creative—I get it. God help me to remember this.

Haircolor and Cancer

In today’s paper there is an article reporting that hair color does not cause cancer. Apparently there’s been an idea that hair dye might be causing lymphoma or other cancer. A recent study says no.

It made me think, what if the study said that it might cause cancer?

Would I stop coloring my hair?

No. There are things that are worse than death. And there are things that make life worth living. A good hair cut and strategically placed highlights are right up there with prayer, meditation and Varda shoes.

Am I Loved?

We are getting ready for a long weekend. I remind myself that this matters to him. He wants this time as much or more than I do. I say to myself, “Get it”. Something in me would convince me otherwise. I think about past relationships when I did not believe I was loved—or loved enough—despite evidence to the contrary. Some old veil in my heart? Some old old message that tried so hard to convince me that I am not loveable. It seems like that would be a problem for me and it is, but it’s also a problem for those who love me. It is as if I am deaf and staring at the mouth moving before me…I sense something but I can’t get it. It is a kind of blindness and a kind of deafness. It limits me but also frustrates others.

I look at this passage from Luke that sits near my computer:

“And those who had seen it told how he who had been possessed with wild demons was healed.” Luke 8:36.

I believe; God help my unbelief.

What I Don't Want to Say

In my writing classes I often give this assignment as an exercise; Write what you don’t want to say. This morning as I begun to blog I find myself thinking, “I can do this later” and “I’m just not inspired today.”

But I take my own medicine. Here goes:

What I don’t want to say is that I am discouraged. I don’t want to say that it’s almost Valentine’s Day and even though I’m 55 and way to cool for that Hallmark marketed sentimentality to matter it does matter. I don’t want to say that I hate being the other woman and I don’t want to say that I’m beginning to wonder if this will be a long relationship or a transition. I don’t want to say that I feel hurt that he is not doing more to make future plans. I really don’t want to say that some days I want to marry him and some days I ask myself if I want to marry because I’m crazy about him or do I just want to win the point? Or make the story come out right? I don’t want to say that I miss my husband and think about all the things that we had in common. I don’t want to say that what I miss most about being married is being able to take that other person for granted; to know that I can look like crap, be inconsiderate and still be loved.

Thornton Wilder

Thornton Wilder wrote:

Without your wounds where
would your power be? The
very angels themselves
cannot persuade the
wretched and blundering
children on Earth as can one
human being broken in the
wheels of living. In love’s
service, only the wounded
can serve.

The What If Game

I have been sick for a week. Sinus, throat, cough, aches. Finally went to the doctor and she said that this is a winter bug. I feel better each day but it’s tough to shake. The other thing going on is I realized that in my head I play a little game called, “What if I have cancer?” The soreness in my mouth could be melanoma. My difficulty swallowing might be a sign of esophageal cancer. Maybe the lung congestion is really lung cancer? With each fantasy I think: Who would I tell? Would I get treatment? Could I go through chemo? surgery? Disfiguring surgery? Would I have the courage to kill myself? How would I get guidance to make that decision well? I think about doctors and hospitals. I wonder about love and romance and yes, sex.

Maybe this is a testing of situational ethics. Maybe it’s my narcissistic self-absorption. Maybe some lingering jealousy of John as the patient. Maybe I just can’t let a cold be a cold and accept the humanity and inconvenience of that.

Risking the Complications

When I was in my teens and twenties I did a lot of rock climbing and mountaineering. I was strong and boldly claimed that I’d do anything once. I hung out with men and women—mostly men --who climbed and flew and jumped out of planes and dropped into deep caves. I went down rivers in a kayak and once came so close to drowning.

Later I realized that my physical risk taking was a substitute from emotional risk taking. I could jump out of an airplane but I also jumped out of any relationship when I got to close to loving. Over time I’ve become wiser about physical risks and riskier about my emotional life. It’s worth the trade-off.

Here is a quote I kept taped to my wall when I was that rock climbing, kayaking, spelunking girl. It is by Rene Daumal in his book, “Mont Blanc”.

“You cannot stay on the summit forever; you have to come down again. So why bother in the first place? Just this: what is above knows what is below but what is below does not know what is above. One climbs, one sees. One descends one sees no longer but one has seen. There is an art of conducting one’s self in the lower regions by the memory of what one saw higher up. When one can no longer see one can at least still know.”

This may also be the answer to why I am willing to love this man even with all the complications.

We Have Cancer

Through this experience of love in the time of cancer I am learning how much one person’s cancer affects those near them, especially the lover, the partner, the caregiver. But I will always remember that he has cancer, I don’t.

I formed this distinction for my self and this emotional goal on the first day of “Chemo Class”. There were other couples there and other people with family members. The newly diagnosed patients were learning about their chemo and the caregivers were learning a bit of what to expect. The couple across from us was there because the husband was returning. He had a recurrence or a new form of cancer. And when the wife raised her hand to ask a question she said, “When we have chemo….” and I was taken aback by the construction and the word “we”.

No matter how much my life is disrupted or how this affects my work and emotions, and no matter how close this brings us as we deal with all of it, I am very clear that “we” don’t have cancer. But John does.

Why Can't I Be Sick

I’m mad. And I’m sick. A cold? A Throat thing? I take pills and cough syrup. It helps but I can’t talk. My voice is gone. I go to work and whisper. I joke about it but it’s not funny today. I’m mad at me for being sick and I’m mad at me because I don’t allow myself to be sick. Then, to add another layer, I’m mad at him too for being stronger—or maybe more stoic? He went through chemo and didn’t miss a day of work. So how can I take a sick day for a sore throat? I know it’s crazy but it’s in there. In my fine little head. It raises the paradox. Is being sick—and knowing it --really healthy? Maybe my reluctance to be sick is a sign of health. Maybe a sick day is a mental health day? Maybe. But I’m still pissed.

The Surgeon

She is cute. Dark-haired, tiny, smart and funny. I sense that she had to learn bed-side and knife-side manners. In Myers-Briggs I’m guessing that she is an ESTJ...you’d want that “S” and that “J” in a surgeon. You’d want a certain amount of confidence and being able to command and control.

The appointment was good. We both asked questions. Talked about the next steps. She will do his colonoscopy in May. The blood testing begins in March. They will test blood for the cancer “marker”. When and if it elevates then they look for more cancer. They don’t do regular CAT scans because, as she explained, you don’t want a lot of scans—after all excess radiation can cause cancer.

It was the first time we had left that office and felt normal. Only when we got to the car did I realize that no scary bomb had been dropped like there was each other time that we’d seen her: 1. I’m going to cut away your ascending colon. 2. You have Stage Three cancer and you need chemo—and a port. 3. The side effects are hard and they are yours. And now, a much friendlier visit, with laughter and smiles all around.

Surgeon Today

Another doctor’s appointment. We’ve had this lovely break from doctors but it’s time to see the surgeon again. I debate whether to go. It’s a check up, but I want to be there. Is it control? To hear what she says that he might not tell me? Because I want her to know that I am his? That he is mine? Maybe because I have been to every other one and I don’t one to break the chain? For six months of chemo I took the plastic wrapper off the newspaper each day and tied them together slowly making a long plastic chain that represented every day of chemotherapy. These doctor appointments are links in a chain too. But what does it keep in? Or out?

We are Sick

His cough became a cold. His cold became my sore throat. My sore throat became a cough. Now we are both hoarse and sniffling. We watched the Super Bowl with tissues nearby. We sleep and wake but not at the same time. In the morning I can see that he has been on the couch again. He sits up to stop the coughing and he reads Crime and Punishment. I toss and turn then wake clinging to the side of the bed. Am I sick enough for a sick day? Why is that so hard? I decide to stay home and the answer is clear. Home alone and quiet and not feeling well invites all the worries and fears. The kitchen counter has an array of medicines and remedies. I move from couch to bed. Tonight we will have soup and try to sleep through the night. Folie a deux? Or Flu for two?

It's Not a Battle

I have always been a reader of obituaries. Maybe I always knew I’d live in a surround of death. Or maybe I always loved the snapshot portraits of people thru the lens of their death. Now, since John’s cancer began I read them also to see the mentions of cancer, of colon cancer, of whether the illnesses were short or long. I see how many die after a “Battle”, “Brave Battle, or “Courageous Battle” with cancer.

Does no one have the courage to refuse a battle? To surrender willingly? To hand over the territory or treasure without a fight?

But then I remember: in most cases these death notices are written by the survivors, by those who watched what they think of as a “battle”. How many times was it not a battle but just doing the next thing? Whose military language is this and why is it necessary to talk about fighting, battles, enemies and winning and losing when this is life and death. We get both. One isn’t a win and the other a loss. Humans live and then die. That’s the whole package and it’s a “win-win.”

I have this same cranky annoyance when I hear advocates talk about “curing cancer”. I mean, if we do will all the people who die of cancer get to stay alive forever and ever? No, they would then get to die of something else. In most cases something more awful than cancer. We will die. Why is that so hard to grasp?

The Scarlet Letter

This morning I ran into my friend T. who is in a similar relationship situation: married, married man, separated, cohabiting. They are like us in everything but the cancer. She does have two small children and was once in The Perfect Marriage so she gets extra points for stigma and logistics.

We talk fast and in a kind of shorthand. We talk about the days that we don’t give a dam what people think. We talk about the days when we care too much and the shame is overwhelming. We talk about the husbands and the wives and being The Other Woman.

We talk about the day to day, the legal and the financial, the social and the psycho-social. Collectively –because of our relationships--we have lost spouses, children, in-laws, parents, friends, colleagues. So many people have judgments and opinions. On a good day I know I am a mirror, on a bad day I think I am dammed.

T. and I agree we need our Scarlet Letters. We need to buy and wear beautiful, embroidered, sequined, gleaming, seductive Big Red A’s.

The Mercy Papers

I just finished this new memoir about caregiving and cancer. It’s a stunning, page-turning read and it’s different than other “my loved one is dying of cancer” books. The spark in this memoir comes from the perspective of a 20-something author and caregiver who is not buying the hospice party line. Here is what caregiving looks like when you are in college, grad school, dating, partying—or at least your friends are.

The Mercy Papers by Robin Romm shows us the misery of losing your mother when you are supposed to be pushing her away, and how inadequate support can be whether it is from friend, lover or hospice. Sounds grim but it’s not because Romm is such a good writer.

Lance in France

In today’s paper I’m reading about Lance Armstrong’s commitment to race again this year. At 37 he’s an old guy in the bike world but as the sportswriters say he’s racing to win and racing to educate about cancer. He wants to bust the stigma of cancer with the hopes that it leads people to get tested and treatments. It is honorable. (This despite how he is regarded at The Amy Winehouse House.see entries on this blog for 7.20.08 and 9.1.08).

But it’s a mixed bag—so to speak. Lance Armstrong and Live Strong are a powerful message of cancer survival. He is the picture of “Cancer won’t kill you so don’t let it stop you.” But is there an unintended message of “cancer can’t kill you”, when in many cases it can?

Am I just being fearful or negative? Am I mad that some cancers make your life hell but they don’t kill you—not very fast anyway? Some days it feels like everyone has prostate cancer but they grow old with it and other folks—yes I’m taking this very personally—have colon or lung or pancreatic cancer and they die even before they fully digest the news. They don’t get back on the bike. They don’t get to date Cheryl Crow. And they die wearing a yellow wrist band.

Anger and Ice

A snow day and it begins so lovely. We cuddle and laugh. Sexy play. We dress like little kids bundled up for the snow and we go outside to clean off the cars. And then the mail comes. My blood runs cold. There is more ice in me than on the cars.

Am I a fool? My head screams, “You are an idiot.”
Is he a narcissist? My head whispers, “Look who he really is.”
Why do I stay? My head says, “He doesn’t care.”
Is this love? My head begs, “Please love yourself.”

The snow day has turned from wonderland to prison. I feel trapped and furious with myself. I want to cry but who do I blame? I want to escape but my pride holds me back. If I could turn back the clock how far would I go? If I got in the car how far would I run?

Worrying

My heart hurts today. I hear his cough and I think, he’s going to die. I see the news and I think, I’ll lose my job. I see the weather report and I think, can I manage the snow. I see my calendar and I think, how do I decide. I see a neighbor and I wonder, what do they think. I see the cross on my altar and I think, is there really a God?

What Have You Changed Your Mind About?

I just finished reading this book of really short essays by scientists and social scientists. The title of the book is the question that was posed to this posse of thinkers by Edge.com

The group riffs on linguistics, chaos theory, artificial intelligence and the size of the universe. All of that was pretty interesting but it’s this question:

“What have you changed your mind about?”

and its corollary:

“Who are you willing to change your mind about?” that have me thinking hard.

It’s about humility and imperfection and staying intellectually, emotionally and spiritually humble.

Am I willing to change my mind about this relationship? About my role? About my behavior? About his and hers and theirs? Am I willing to change my mind about “the right thing to do”? Am I willing to change my mind about who gets hurt? Who got hurt? Am I willing to change my mind about God’s will? About cancer and treatments and death and dying? Am I willing to change my mind about love and what real love behaves like? Am I willing to change my mind about what my mind tells me?

Coaches for Cancer

Today we volunteered at an American Cancer Society event that featured four high school basketball games. Yes, FOUR. Basketball all day long! What is the connection between cancer and basketball? Well, it was a fundraiser of course, but there are greater connections:

1. In cancer, as in basketball, you will have your butt run up and down the court.
2. Seemingly out of nowhere the game will change up on you.
3. All around you people are saying, “Lookin’ Good” while you are thinking, “I can’t breath.”
4. There are time-outs, (Not as many in cancer as there are in basketball), but the time-outs in cancer are so sweet—you begin to believe you can have a life again.
5. When you are in the middle of the game, playing as hard as you can—in both basketball and cancer—you cannot see the many people who are cheering wildly for you to win.

What if You Die of Cancer?

Last night the conversation began around legal stuff. Talking through the financial, the legal, the logistical. The conversation crept close to the issue of timing and what has never been said aloud was finally said: What if you die of cancer? For months we have danced at that edge and then it was said. The urgency and fear that surround all the other issues is right there: Is cancer gone? Lying in wait? Growing rapidly and invisibly? Will cancer make all the other decisions null and void?

There was relief in saying this scary thing we’d both been thinking.
And sadness in knowing that we both already knew.

Fighting With a Friend

Maybe this is one of the hardest things about being a friend.
A long time woman friend told me that she feels sorry for my ex—poor guy-- I left him. It took a couple of hours for the anger to really hit me. Yes, I left but this woman was there the whole time, she was my confidant, she knew what he did and what he didn’t do. She knows my faults and my gross imperfections—it’s a long, long list. But “poor Him”?
It makes me feel crazy. And under the crazy and the anger is just a well of hurt.

Inaguration Day

Yesterday was an important day. The Inauguration of Barack Obama. Watching our country make this change. My husband always tells his classes: “The most important moment in this process is when the incoming president goes to the White House and Picks up the outgoing president and they ride to the inauguration together. Look at that ride and the dignity and decency of that transition of power. Note: There are no automatic weapons.”

I watched that then went back to work. Crazy work day then home to have the neighbors to dinner. Another moment of becoming a couple: We entertain well together.

But looking at another couple and feeling some envy. They have a full life that includes children from both lives. They mix and mingle family members. They are making plans and being active. I read between the lines and know there is real life: alimony, hip replacement, differences in politics and beliefs. But I felt their coupled-ness and longed for it.

We clean up and dress for bed...interrupted by the mirror and passion and pleasure. Those things we are good at.

Is it enough? I wake so tired. Worried about work. About his health. About mine. About what will really make me happy.

Maxine has a Tumor

A friend named Maxine has a tumor in her chest. The good news is that it has not metastasized into the chest wall or into her lungs. It is contained. Surgery will remove it and there is no expectation for chemo or radiation. The bad news is that they will break all of her ribs to get at the tumor in surgery. Recovery from the broken ribs and the operation will be very painful.

I worry for her and I dread her pain. Her husband and daughter are afraid. The complication is that she is the wife of my husband’s best friend. They have supported him through the pain of this year. I have kept my contact minimal—knowing they love me and knowing they are wise enough to know that no one is bad in all this. But still. I have wanted to leave them to him and him to them.

Now Maxine has a tumor.

I call. I leave messages. I send a note. I email. It is all good and well received. But here it is again. Another kind of love—Agape not Eros—in the time of cancer.

Churches are Closing

We went to church this afternoon. We haven’t been to the Catholic Church together in months, but today the Bishop’s decisions about church closings and merges would be announced at the 4pm mass across the Capital Region. I felt it was a moment to experience and I was very curious to see how the simultaneous messaging would be done.

It was done very well. The music was about following Christ wherever he goes. The messages were about all people being welcomed and we also sang about surrendering to God’s will. Coincidence? Then the priest, not the Pastor for our parish but one from across town. Another message: Get ready for change. At the time of the sermon the priest had a humorous opener about dealing with the unexpected and making the most of a bad day then he read a letter from the Bishop---the body of the letter would be read in every church at the same time but one paragraph was customized for each church giving them the news of their church or “planning group.” The news for our church was minimal. One small church in a rural area will close in two years and the other three churches are encouraged to work closely together.

In other churches we knew it had to be worse. Congregations in Troy, Watrevliet and Cohoes were hearing the words “will close”. There had to be gasps and tears and there had to be anger.

I think about our Bishop, Howard Hubbard. A man becomes a priest to have a life of the sprit, to serve God and to one would think—not deal with the congress of the rest of the world. Instead for this man he becomes the CEO of the Diocese and has huge personnel problems, PR and marketing problems, deficit after deficit and then merger upon merger. He is living a CEO nightmare and has to make decisions with committee after committee. I do pray for this guy!

It was great to be in church with John. To hold hands, to sing side by side. To say words we both learned elsewhere and have said before, but now say together. Participating in mass together is a kind of intimacy that goes beyond sex.

Anniversary

Today is my wedding anniversary.
We would have been married 15 years.

Waiting for Guidance

I have this page in my journal from a Course in Miracles class I took years ago. I read it and re-read it. I read it again today:

“Everything happens at the right moment, the acceptable time of the universe. You on earth do not always know what that time is, but if you will follow the guidance of the Spirit, waiting patiently for a clear indication for action then you will be guided aright.”

Mermaid Wisdom

I’m re-reading The Mermaid Chair by Sue Monk Kidd. Today I came across this passage in which the woman’s husband—a psychiatrist—is trying to understand why his wife is having an affair. He says this:

“When a person was in need of cataclysmic change, of a whole new center in the personality, for instance, his or her psyche would induce an infatuation, an erotic attachment, an intense falling-in-love. Falling in love was the most ruthless catalyst on earth. But typically you fall in love with something missing in yourself that you recognized in the other person.”

Funny Movie

OK, so the funny movie I decided to watch was “The Women”, the 2008 remake of the 1939, “The Women”...about a woman who finds out her husband is having an affair and her friends rally round and show her how to value herself and he learns the tragedy of his mistaken ways.

There are a lot of lines in this movie like, “Nothing cures a man of having an affair like too much time with his mistress.” and “No man wants to believe that only his wife would love him for who he really is.”

Anyway, the best part is seeing Jada Pinkett as a lesbian and Meg Ryan as a woman supposedly scorned—she’s just so dam cute even when she’s sad, mad, scorned or confronting her husband’s mistress. Frankly in the dressing room scene where Meg is making her high horse speech with the Other Woman, I’m thinking, Meg you are too annoying; If I was him I’d go for Miss All-Legs-Add-the-Cutlets too.

So maybe I would have been better off watching Airplane (it’s a big metal box that flies but that doesn’t matter) or The Princess Bride (as you wish).

The Women just raised the specter of Other Women, which while better than lung cancer is still a great source of pain.

Coughing

OK, I admit this is one of the ways that I scare myself.

He is coughing.

Yes, it’s winter and cold and he’s around sniffley kids all day and it’s cough and cold season and the humidity is nil. But he’s coughing.

Today a woman from the Lung Cancer Association spoke at a workshop I attended and she casually—oh so casually--said, “A cough and shortness of breath are the only symptoms of lung cancer.”

So all the way home I thought, “Five months? Eight months? Surgery? Hospice?”

And to make myself feel as bad as possible:
“He won’t even know who I am.”

I need to go watch a funny movie now.

Memento Mori

The ancient Romans used to carve “MM” on the bases of statues and on the trunks of trees. The letters stand for Memento Mori: Remember Death. This was not intended to be morbid but to be a reminder that life is short and death is always near. It was a tool for perspective and discernment. Philosophers and writers might keep a skull or bone on their desk for the same reason. Carlos Castaneda recommended that we learn to live with death on our left shoulder and to consult him on our daily decisions.

Maybe it is one of the gifts that cancer gives. Death is close in Cancer Land. You look at the person you are caring for or you notice it in the others you see at chemo or in hospital. Ordinary doctor’s visits are never the same. You never know when a routine check-up will lead to that phone call, “The doctor would like you to come in for another test” or “I’d like you to see a colleague of mine.”

Can we accept death’s presence for the gift it is? Given that death is part of our lives and we see it, what really matters? Given that I will die, what do I really want?

Mmmmmm.

Dance Every Day

“And we should consider every day lost on which we have not danced at least once.”


--Friedrich Nietzsche

More than Just Talking

So we talked about sex and pleasure and not shrinking from a life of sensuality and pleasure. I was surprised that all my worry about talking the man talk with excess concern for delicacy and ego was unnecessary. Turns out John’s ego is not located in his penis. Another positive feature of this great guy. The bonus was that it began a shift to a new level of learning about each other. It makes sense now that when, in the Bible, they say that a man and a woman “knew” each other they were not being euphemistic.

Talking About Sex

Did you watch Oprah today? I came home early just to see Sex 101 with Dr. Laura Berman and it was worth it just to get the foreplay map…a little sketch of a cutout doll and the exercise is to mark where you want to be stimulated and your partner marks where he/she thinks you want to be stimulated then hey hey—compare drawings. Then do the other person’s zones.

Yes to estrogen, vibrators, pole dancing and changing the inner voices and it’s all good stuff. But since this blog is about love and cancer let me tell you that it gets to be a special challenge when you throw in surgery, chemotherapy, medications and yes, the side by side effects!

Oprah’s message from today’s Sex 101 is: Tell the Truth and that is probably the hardest part of love (and sex) in the time of cancer but even though I have sobbed (and sobbed and sobbed) about my fears related to this part of our life I have also felt something in me shift. I want intimacy and I want a good sex life and I want that good sex in this relationship. So it means some unbelievably frank talk (with John not Frank of course) and it means some risky and frisky adaptations. But what I realized today watching Oprah is that this relationship is based on some amazingly risky choices and shocking decisions so why shouldn’t our sex life include those values as well.

Tonight, I’ll be talking the man talk with my man.

Thanks Oprah!

Side By Side Effects

Now we get to the real cruelty of cancer. It’s not the cancer that kills you but the side effects of the treatment. Patrick Swayze said something like that last night in his interview with Barbara Walters. He described the excruciating bowel pain that is the side effect of the chemo he was on for pancreatic cancer. Now he’s on a new regimen and he has neuropathy and exhaustion. John and I watched the interview together and both thought, “Hmmm that sounds like our old friend 5-FU”.

But here’s the bitch. John’s chemo is over and he is left with numb hands and feet. He now takes Lyrica to help with the neuropathy but the side effects of the Lyrica are weight gain, dizziness, memory loss and confusion, loss of balance etc. And now I am learning that there are even more complicated side effects when you try to come off of the Lyrica. It’s a pharmaceutical bitch.

Can I see Clearly now?

Our deepest wounds are the lens through which we see the world.

--from my journal June 5 1994

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

It is a song that can bring tears to my eyes. It is a song that is –for me—about recovery and healing. I am so aware this week of my own wounds and how they distort how I see John and how I see myself in this relationship. I know that anyone would be afraid of cancer and that any caregiver fears the person they love will get sick, sicker, or die. This is not about turning a molehill into a mountain. This is not about turning a stomach ache into cancer. It’s about cancer being cancer and being life threatening. But still, but even with that, how much do I lose my --and our --good life to my old beliefs that I will be abandoned and left? How much do I assume that will happen because I am not enough? How often do I set me aside and wait for pain and grief to descend and when they don’t I go and shake the fear tree to bring it faster, bring it now, so that I can have the familiar terror?

Oh enough already. It’s about woundedness and beliefs. I am a woman of faith and I believe in God but these beliefs are something else. Maybe this is a kind of blasphemy—I have created Gods of Woundedness that I worship and serve before my God of love. Oh God, I am ready to relinquish this belief in false Gods and let you love me now.

Lost and Found

Here is the hard part. How do I know in which direction growth lies? Or does it lie? Is becoming more vulnerable and trusting the way to work against my old fears and scars? Can I trust myself if not him? Is it always better to love even if that means loss? Or does the choice to stick and stay mean facing all that I have to fear?

Last night I lie awake and listen to the voices that insist I will be left. Left and lost. The perpetrator may be a man who cannot love or it may be the part of me that cannot be loved. The urgency to decide presses me. My comfort comes from a poem by David Wagoner and from a line from Samuel.

Stand still. The trees ahead and the bushes beside you
Are not lost. Wherever you are is called Here,
And you must treat it as a powerful stranger,
Must ask permission to know it and be known.
The forest breathes. Listen. It answers,
I have made this place around you.
If you leave it, you may come back again, saying Here.
No two trees are the same to Raven.
No two branches are the same to Wren.
If what a tree or a bush does is lost on you,
You are surely lost. Stand still. The forest knows
Where you are. You must let it find you.
– From Traveling Light: Collected and New Poems

And here is the verse from 1 Samuel 12:16:

“Now then, stand still and see this great thing the Lord is about to do before your eyes!”

Love as a Found Object

Yesterday in the New York Times I read the review of The Mercy Papers by Leah Cohen and discovered her blog: Love as a Found Object. She is an amazing writer and is telling her story of loving her mother thru cancer. Yet more love and cancer. What I loved was her way of weaving art and literature and language thru it all. No battles no war just creation and grief and love. All of that I have and wish for as I love John in cancer.

A New Year...Now back to work

New Years Day we had an open house at our apartment. We mixed friends from all parts of our lives and the fun was in seeing who knew each other that we didn’t know knew each other. I realized that I love to entertain. I’ve never liked to cook—though it turns out that I can—so I assumed that entertaining was not for me. But what I like is having people meet each other. Now, with John, there are more worlds to intersect, and in some cases, collide. There is also a growing sense that we are a couple—we have made a home, we travel, we have love and cancer and now we entertain together.

Tomorrow we both go back to work. This is the real sense of the New Year beginning. The economy is in rough shape and it will impact our workplaces and certainly impacts my creative work. Maybe this will also be freeing. Maybe when there is no market I will do more that is less market-driven. Now we are entering ordinary time. Now we are in a new year.

If Nothing Changes

It’s so easy to make this all about him and all about cancer. But the truth is also that I bring my past to this and that past and its fears run me. It’s hard to sort it out.

The New Year screams Change! Change! And asks me bluntly, “What do you want?”

I want peace and I want freedom. But I have these ancient beliefs that seem to run me: a belief in abandonment; a belief in defectiveness; a belief that I will not be loved. Against these beliefs in the evidence: my family died and I survived them; I lost so many people that I loved; but I also have people who love me, and who do not leave; this man tells me over and over that I am his dream woman and that I am the love of his life; I lean forward listening as if in a fog or partially blind and deaf; I hear what he says and I hear dimly what others say: I am talented, beautiful. But the ancient beliefs—the schema—scream as if to drown out the newer voices.

God help me.

Restore me to sanity.