Thursday, October 29, 2009


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

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

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

Sunday, October 25, 2009

Sporting News

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

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

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

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

Thursday, October 22, 2009

Scarlet Letter A is for Able

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

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

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

Monday, October 19, 2009

Flu and Fear

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

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

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

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

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

Saturday, October 17, 2009

Clergy and the Other Woman

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

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

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

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

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

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

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

Wednesday, October 14, 2009

Lotsa Helping Hands

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

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

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

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

Tuesday, October 13, 2009

Beach Surrender

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

This weekend I wrote the names of all of our family members his and mine, spouses and kids, siblings also. I wrote his name and my name and I wrote my workplace too. I live in the gap between wanting to make a complete surrender, making that surrender for an instant or a moment and then, seeing, even as I walk aback to my car fear returns and my wish to control something or someone is already back in my head.

Surrender is such an imperfect process but I do think it is a process. I really do wonder about people who say they have done it and it’s done. Do they really never worry again? Worry means I still think I can affect an outcome. Curiosity might be the antithesis of worry. Being able after surrender, to wonder: “I wonder how God is going to play this one out?”

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

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

Over and over I surrender and return to these things.

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

Tuesday, October 6, 2009

ICU Waiting Room

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sunday, October 4, 2009

Cooking and Cancer

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

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

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

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

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

Friday, October 2, 2009

Follow Up NYOH Day

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

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

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

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

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

Thursday, October 1, 2009

Fighting to Remember

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

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

Cancer had gone on a long trip.

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