Wednesday, December 31, 2008

The End of the Year

My favorite calendar is the T3V by Letts of London. It is leather bound and a book format. On most days it is the most luxurious thing in my life. I buy the calendars from Layweines in Yorkville in Toronto—the most wonderful writing goods store in the world. I always splurge and buy two for each year just in case I have to make big changes mid-year. Last year I bought both books in red leather. It turned out to be a scarlet letter year. And a year of big changes.

Today when I closed out my 2008 calendar, and switched the important phone numbers to the soft teal colored Letts for 2009, I went through the 2008 book. I could trace the meetings, the cups of coffee, gelato dates, dinners, walks in the cemetery and days of rendezvous and love making. Seeing those days and watching how the calendar of our life unfolded I also remembered the times of hurt and anger. The things that were said, unsaid and those that were kept secret. I also saw how cancer wove its way into our lives. The date that says “drive John to doctor—keep cell phone on”. It was for a routine colonoscopy. The rest is love in the time of cancer.

Looking through that calendar I could see my back and forth, my emotional debates and painful struggles. I wondered, as I have all year, why I did not make my “no” stick and why “go home” did not stick for him. I saw his absolute confidence in this relationship and my tormented debate. Our pattern was established early on.

Today on New Year’s Eve we will have a romantic lunch at a French restaurant and go to a movie. After that we’ll go to the bookstore where we can play and use the gift certificates that are burning in our pockets. Then home to a small dinner and a movie on TV. I have laid out my sparkles, sequins and black lace for this night. A new year will begin. I can’t even guess at what 2009 will bring. But I have no regrets.

Tuesday, December 30, 2008

Amy Winehouse on Married Men

One of my Christmas gifts from John was the Amy Winehouse Tribute Album. (Amy is important in our life of love and cancer. See the entries to this blog from 7.20.08 and 9.1.08).

She has become a joke to many because of her, shall we say, dissolute ways, and yes, her refusal to go to rehab. But listening to the new album it’s clear the girl has a great voice. She is more chanteuse than rocker, more Edith Piaf than Janis Joplin.

I play the CD over and over. Years ago I listened to and loved the Roaches song about The Married Men and now Amy sings about the married man in her life and the girls in bars constantly disappointed by the married men that they believe in and are then disappointed by. I struggle here too. He is married after all. I squint at that. We are a couple now for years. Some days it doesn’t matter. But then suddenly it does and I am defeated by my own feelings and the force of social culture.

When John and I talk about this it is clear that he doesn’t care. “I love you and I am here, we are a couple, we are committed.” It’s very clear to him that nothing else matters.
I wonder if this will be the breaking point. He doesn’t really get this and until he does he’ll have to go, go, go

Sunday, December 28, 2008


The teacher talks to us about discernment. She says that discernment is always a choice between goods. In true discernment either choice is for something good: Go to Mexico or Go to Italy. Marry him or remain on your own. Study art history or study theology. Each one is good but you cannot do both. How to discern?

Some discernment advice:

Get the facts: Are their financial implications? Health requirements? Prerequisites?

Talk to smart people: Talk to those who have done these things.

Then live for two weeks as if you are making Choice A: I will marry him.
How does that feel?
Then live for two weeks as if you are making Choice B: I will leave him.
How does that feel.

Get quiet. Very quiet. Listen for God’s still, small voice. Stay quiet and pray.
What do you really want?

Thursday, December 25, 2008

Cancer and Christmas

It’s all here. Love and carols, candlelight service at the United Methodist Church last night, sleeping late and making love through the morning, a sponge bath then washing his hair over the side of the tub—he cannot get the stitches wet for three more days—a walk in the neighborhood, opening gifts—books and music, and tickets and clothes for both of us. These are the things we have shared and talked about from the first day we met. Cashmere and satin and a collection of erotic poetry keep the love alive. We cook dinner together: Cornish game hens with smooth small breasts, artichokes to slide through our teeth, potatoes soaked with butter and garlic and chocolate mousse. A bowl of nuts to crack while we watch A Christmas Story.

Christmas together. We never thought we’d see this. But here it is. We have both cancer and Christmas and it is enough.

Tuesday, December 23, 2008

Hospital Bah Humbug

Ok, so they said that removing his port would be a very simple procedure. And it was. But what they did not say was that the after care is not simple. He was in and out of the “procedure” in less than 30 minutes and it was local anesthesia only. But on the way out the door they said, “Oh, and no shower for seven days. Be sure to not use that arm for a week. And nothing strenuous for at least ten days.”

So now what do I do with all the red lace on Christmas Eve?

Monday, December 22, 2008

No Port No More

Today back to St. Peters Hospital to have John’s port removed. The port was installed seven months ago and he received chemo thru that opening in his chest. A handy device but an alien object.

I was cranky all morning though. Truthfully, it was a bad hair day but I was also unhappy to be returning to this hospital which feels like the scene of the crime. Amazing how those feelings come back. The fear during his initial surgery…seven hours became 11 and then 14. His pain and my pain and her pain too.

The port was installed In June and chemo began a few days later. Since then our lives have been about cancer and chemo when they are not about love and sex. Quite a distillation.

But today I was there again, wandering hospital hallways, finding the cafeteria and gift shop and the chapel. This was the chapel that I visited so often that long week when he could not talk or sleep or eat. That scary week when—I realize now—we didn’t even know how much scarier this could eventually get. So that chapel was home.

My prayer today was for his health, for her peace, and for my freedom.

Friday, December 19, 2008

Post-Caregiver Let Down

A friend asks me, “Is this post-caregiver let down?” I am full of resentment, sadness, and just plain pissed. Everyone is congratulating him, praising him and asking “how are you?” He is, he says, “Fine, great, just fine.” But I see the lines on my face and the work I have left undone for months, the opportunities passed up, the ways I let go of things that I now have to go back and clean up. It’s not just the doctor’s visits and the worries but the cost to my life. My head haunts me with the Mother mantra: “Selfish, selfish, selfish”, the horrible accusation. Oh well, maybe I am but cancer and caregiving happened to me too. Was I expecting a trophy? No, but maybe thanks or something that sparkles.

Monday, December 15, 2008

No Care for the Caregiver

I feel like I get a big “F” in taking care of myself. I have been good at taking care of him but today: sick, tired, mouth hurting, aching and yes, heart hurting too, I wonder. In my hope to not be selfish, in my desire to be helpful, I forgot that I could lose me. Love in the time of cancer now feels like another kind of cancer. It feels like I have been foolish, blind, squinting, believing lies, wanting to hear what I hoped to hear. I am sad. I need love medicine of my own. But who is my caregiver? I forgot to get that in writing.

Saturday, December 13, 2008

I am Sick and Tired

Last night I went into the bathroom to take out my contact lenses and in less than a minute I was on the floor, head over the toilet and vomiting. Dizzy, diarrhea, vomiting. I lay on the floor and then crawled into bed. After that I was back to the bathroom every three hours for another round.

Was it something I ate? (John and I ate the same food) Was it the flu? (I had a flu shot) Some other bug?

Finally it was morning and I was empty and exhausted. I began to sip juice and warm Coke and to eat dry cheerios one tiny O at a time. But I am tired and still a bit dizzy. I get up to work then lay back down. It’s frustrating. I am not good at being sick.

I think about John’s chemo and know I could never do it. I fight being sick. I can’t surrender. It makes it worse.

And yes, all the while I am thinking, “what if this is something worse, the start of a real medical problem?” The odds are that it is not that but now I have an extra layer of fear having seen life go from ordinary to cancer.

Wednesday, December 10, 2008

Sorting it Out

I’m sorting now. It’s a gift from the pause in treatment and it’s overdue in this relationship. One of the things that cancer took from us was time to be more casual and time to move slowly. I didn’t know it but I have been craving that slow, easy time in a relationship when you can say, “Oh you like that? Well, I like this.” That time when you can zig and zag, and with enough time to explore the other person and to ask hard questions. Where will this lead? I don’t know, but I need this time. I feel my bones relaxing. For the past six months I didn’t know that I was holding on so tight or holding so much in, but now it feels like something is collapsing, something is releasing and I need this release so bad.

Monday, December 8, 2008

Cancer Triangle

Now we are in-between and it is its own strange time. Making holiday plans, shopping, talking about gifts and trips and life—as if cancer is over. But is it over or only away on a trip of its own. They say that people who have cancer are never really over it. Once you know this can happen to you it’s always there hovering in the background. It’s true for caregivers too. It’s there in the background and compounded by my questions about the relationship. Will we ever have a relationship that is just us? Will there always be a triangle: me and him and cancer?

Saturday, December 6, 2008

At the Still Point

At the still point of the turning world. Neither flesh nor fleshless;Neither from nor towards; at the still point, there the dance is,But neither arrest nor movement. And do not call it fixity,Where past and future are gathered. Neither movement from nor towards,Neither ascent nor decline. Except for the point, the still point,There would be no dance, and there is only the dance.

(from TS Eliot, Burnt Norton II)

Friday, December 5, 2008

Intimacy and Autonomy

I'm trying to find the middle. What is the midpoint between caring and self-sacrifice? What is loving and what is subjugation? How do I take care of him and not lose me? How do I learn about his life and not lose my own? This is the challenge in all relationships—the balance between or the pendulum swinging from intimacy to autonomy. A good relationship needs both for both partners. But it’s never at the same time. I feel vulnerable here, like I could get lost, drown in his life, lose my own. And then what? Hate him and me.

Tuesday, December 2, 2008

Dressing for All of It

Ok, here is my sartorial challenge for tomorrow:

I begin by delivering food for volunteers, then go to the public radio station to record a holiday essay, then to a ladies holiday lunch at a country club, then I meet John at the oncologist’s office for his post-chemo check-up, from there it’s back to the office to meet with more volunteers. I have to create one outfit that can last all day, fit all these circumstances, and that is comfortable!

I have laid out several outfits: Brown skirt and sweater with “good” scarf and low heels. That’s pretty me but underdressed for the luncheon. So I try brown sweater dress, pearls and boots. Again comfy and easy and nice looking but more like church. I have lots of black—but do I want to wear black to the oncologist’s office? Bad omen? Bad sport? Black and red will work for the holiday lunch and I could wear flats most of the day and switch in to the pointy high heels for the lunch. But then do I look like a party girl at the volunteer event and like a Republican wife at the NPR station? And what if the news is bad at the doctor’s office? Will I be Tammy Faye with streaming mascara, low cut top and sparkly gold earrings?

Does it matter? I know, you think the answer is no, but it’s not. It matters a lot. It matters that I feel like me all day long and that I look and feel good so I can stay in my skin until and when listening to the oncologist. If the news is good I’ll be glad my earrings are dangly and if the news is bad I’ll be glad that all of me was there.

Sunday, November 30, 2008

Precious Time

We spent this day talking and making love. Maybe this too is a bit of chemo recovery for both of us. I’m not sure yet whether this is a new start or a respite but I am grateful for this precious time in our life.

Saturday, November 29, 2008

Starry Starry Night

I went to the Van Gogh exhibit at the Museum of Modern Art. His most famous painting, “Starry Night” was in a room by itself. Sadly, it is impossible to look at Van Gogh painting with out hearing Don McLean on the internal sound track in my head. The song just came. I fought it, then I let it be. There is a cultural collision: painter and song writer; a song about a painter and when we see the painting we hear the song.

Van Gogh said, “When I feel the need for religion I go outside to paint the stars.”

I realized, standing in that gallery, that when I feel the need for faith and consolation I go to art museums. I always find comfort, quiet and reassurance. I am held together by the power of art. If there is not a God then art will save me. But how could there be art if there is not something bigger and even more creative.

Monday, November 24, 2008


I attended the Alzheimer’s Conference today. Lots of talk about caregivers and caregiving. No matter what the disease or illness, no matter what the age of the care recipient, I see the obsession and distraction. Women talk of their husbands, mothers and fathers. They try music, massage, acupuncture and prayer. A panel of husbands caring for wives. That is poignant. A man cries. He is afraid to let her down by sending her to day care or a nursing home. He is supposed to be able to do this. He has to dress her and fasten her bra and fix her hair. It’s hard, so much harder than the word “caregiver” ever implies.

Sunday, November 23, 2008

Love After Chemo

Chemo is over and even though some fear remains, and even though there is still a CAT scan and blood work to get through, I don’t want to miss this: Six months of chemotherapy is over. He did this with style and grace. It is true that adversity doesn’t build character, but rather reveals it and in this prolonged adversity his strong character was revealed. He did not miss one day of work. He did not whine or complain. When other people admired his courage he reminded them that he was just doing what was in front of him. He also very graciously and very gallantly said that being the person with cancer is easier than being the caregiver. The person with cancer gets all the sympathy and all the breaks. He is right about that.

He says it feels like he’s out of prison. Chemo ended just yesterday so the side effects of this recent round are still here (fatigue) and still to come (more mouth pain and neuropathy). But it is uphill from here.

Love in the time of cancer: Still love. Still time.

Saturday, November 22, 2008

The agony of da feet

Chemo now officially over. Jeanette, our favorite nurse, came this afternoon and unhooked the infusion pump. 5-FU is gone at last. Now the feet, the feet. They are numb. Numb doesn’t sound like much until you realize that we use the nerves on the bottom of our feet to walk, stand, balance and to know where we are in space. Most of our spacial orientation comes from nerve messages from our feet. It can take a year or more for this to improve. The party line is that somewhere between 20 and 80 percent of the neuropathy is for keeps. The gift that chemo keeps on giving.

Friday, November 21, 2008


Last chemo yesterday. It hit me that it has been six months of chemo and cancer. At the oncology center the nurses blew bubbles and offered hugs and congratulations. When they were blowing the bubbles, nurse Felicia joked about making John dance, I felt myself shaking and swallowed back the tears that sat just below the surface. His six months yes, but mine too. Six months of short changing work, missing sleep, worrying about everything, scheduling our lives around “chemo weekends” and six months of fear. The fear is not over. Now come the CAT scans and the regular blood work to see if there is still cancer somewhere in his beautiful body.

Everyone asks, “Are you going to celebrate?” And we laugh in reply, “Oh yes, on Saturday when the infusion of FU is completed for the last time.”

Maybe someone who has been through this will understand. We came home from chemo and had a big fight. Out came all of the tension and all of the expectations that were hidden under, “If we can just get thru six months” and that now leave us with much less obvious but scarier medical steps to take. And too we are now left with the relationship, no longer hidden behind, “When chemo is over.” All of that, all that was hoped for, fantasized and deferred has burst on us just like the soap bubbles that came as congratulations.

Wednesday, November 19, 2008

The Last Lecture

The talk and then the book, “The Last Lecture” by Randy Pausch has been on the best-seller list for more than a year. I’d heard of it and kind of knew his story. Randy was a professor at Carnegie Mellon University in Pittsburgh who was diagnosed with pancreatic cancer. He was told that he had a few months to live. He gave his talk, the last lecture, at CMU, in which he offers advice and last words of wisdom. I put off reading or hearing this because I wasn’t ready to hear about more cancer but last week I got the book on CD to listen to it in the car. I expected to be moved and inspired.

Nope. By the end of the first CD I was pissed. I could not believe that this guy with three months to live wanted to spend all of his time working. Rather than spend time with his wife—whom he refers to as the love of his life and not with his three young children but working. With 90 days to go he spends most of his time writing, taping and editing this talk and later book. He gives the lecture at Carnegie Mellon and—this is my disappointment I’m sure—rather than say “stop and smell the roses” or “now I know what is really important” he spouts advice on ambition, working harder, achieving your goals and even how to organize your files. Success, recognition and celebration by others are what he is pitching. The guy is dying for God’s sake and he’s thinking about whether other people are impressed.

I kept thinking of what I have heard before: “We die the way we live.” If we live full of fear we will die full of fear, if we make life all about accomplishment then we’ll make our dying into an accomplishment too. That’s what Pausch seems to be doing in his Last Lecture.

Heresy? Yep. I seem to be a heretic—so yeah, that’s probably how I’ll die. The smarmy platitudes are lost on me. I’m sorry this guy died but I didn’t like him much. I kept thinking about his wife and how broken hearted it must be to realize that the man she loved and made a life with cannot—even in the last good days of his life—give her quality time—and wouldn’t even stay home with her on her birthday.

But all is not lost. There was value for me in hearing this book. Randy Pausch died as he lived and in that he had a kind of integrity. It’s not a life I’d like or a partner I’d like. But he was a success-seeking work-a-holic and he didn’t deny that part of himself or discard that even with just 90 days to go.

John and I have talked about how he spends his time and I have felt hurt about some of his choices, but Randy Pausch reminds me that this is not my life. It’s his life. The even bigger gift in this is that both of these men now inspire me—and even push me-- to go live my life.

Sunday, November 16, 2008

Long Talk About Love

Could we even remember what began the conversation? This morning I can’t. It began Friday night—maybe Friday morning. It involved concert tickets, an old girlfriend, coming late to dinner, a clash of calendars, and what a particular word meant. Ah, the devil of two people who love words and who think that language really, really matters.

There was talking then crying. I cried, he cried, I cried, we cried. There was yelling, “Fuck you” from both parties both under the breath and then loud enough to shake the neighbors.

There was “You don’t listen”, and “No, you don’t listen”. Then there was careful and concentrated listening. There was “This is what I am trying to say” as we both struggled to form the right words and struggled inside ourselves for—“What is it that I really want to say?”

We moved together and apart. Went to meetings, practice, errands, and the kitchen. Clothes on and clothes off. The hope appeared in the form of laughter—finally—even as we were saying, “Fuck you.” “Really”, he says, “That’s what I want.” “We should only fight naked” is my suggestion. “Then I’d keep trying to piss you off” he wisely offers.

The love never left the room is what I know now. We talked for days, spiraling then circling, coming back to “This is what I want.” Then a gentle night and lovely, comforting skin on skin. We wake in peace and he goes to get our Sunday donuts and the New York Times.

Friday, November 14, 2008

Don't Go to the Hardware Store for Milk

"Don’t Go to the Hardware Store to Buy Milk." This slogan is not original with me but one I have borrowed from Al-anon. In that context we talk about accepting that we cannot get love or understanding from people who are unable to give it, and it reminds us to stop trying. Often in families with addiction it takes repeated trips to the “hardware store” before we realize that they don't sell milk there.

Today I talked to John’s family. They are concerned about him but when I talk about this being hard they say, “He’s fine; there is no problem.” I find myself wanting to say, “but I know some things and I am worried." Each time the subject is changed and I am told firmly, “It's all going to be fine.”

Today I realized this is what they have to believe. Unfortunately for me this means they can’t support me, they can’t allow themselves to accept that this may be hard for him or for me so therefore they cannot accept that our life is anything but normal except for a few extra doctor’s appointments.

When I got off the phone I was mad and sad. I want someone to see what I see. But then I remembered: “Don’t go to the hardware store for milk.” I can’t ask these people to be who they are not. But I can go to my friends and those who have been where I am. I don’t have to go without just don’t go where it’s not.

Wednesday, November 12, 2008

Favorite Reminders

I have two important statements on the tape recorder in my car.
Everyday—several times a day—I push a button and I am reminded that:

1. Happy is not later; it’s right now, and good is not over there; it’s right here.
2. The one who says no the most times gets to be the writer.

Monday, November 10, 2008

Heartbreak after Obama

Yesterday I remembered. My husband and I had a bet. We had a deal. It began three years ago. If we were able to see a Democratic president in 2008 he would go to Disneyland with me. He had never been and said he never would. So the deal seemed perfect. He thought the American people were stupid and could never make this happen. Then the campaigns. Our separation. The challenges. Separating our books and belongings. Talking money. Talking politics. But neither of us remembering. The possibilities were so great: the possibility of a Black man as President of the United States. The possibility that we could still be friends. The possibility, then the reality, of having a Democratic president.

Yesterday in the New York Times I saw an ad for a week at Disney World and I remembered. It broke my heart.

Saturday, November 8, 2008

Out at Work

Last night John came to the Gala fundraiser for my organization. It’s been distracting me for days—the gala itself-- but also the reality of him being there. It’s work for me and I worried about that. He would see this other part of my life up close. But my worry was also about others seeing him—with me. It was another layer—or un-layering of this relationship. A big part of becoming a couple involves the presence of other people. We are formed as a couple when we are seen by others and also when we see ourselves being seen by others as a couple.

For a few days I have been imagining scenarios of him not coming to the gala with me. Maybe he’d be too tired, too sick, bad chemo. Maybe he’d forget, come home too late, lie down to nap and wake at 9pm. I imagined how righteously angry I could then be, “You missed my Gala”, and I’d have a resentment to nourish until it grew big enough to help me leave him. I watched myself form these fears and fantasies and then I realized finally that I was afraid of this big and next step of coming out as a couple. I was taking him to work with me, and in front of others who matter in my work life, we were being a couple.

Friday, November 7, 2008

Graphic Novels

I got this new book, “American Widow” by Alissa Torres, from the library yesterday. I read two pages on my way to the Town Board meeting and then four hours later (after a horrific meeting that lasted until almost midnight) I read more to distract and soothe my brain, and finished the book this morning.

Take a look at this book: You may even be able to read it in a chair at the bookstore. It’s a graphic novel and clearly one of the best examples of why this genre can work better to tell some stories than a full narrative with words. The other book that I have seen do this in an equally powerful way is the funny but also poignant “Cancer Vixen” by Marissa Marchetto. Interesting that these graphic memoirs—two stories of woman surviving our worst fears--loss of the one we love and the threat of losing our own life—are best told with fewer words and more images.

And yes, these are the threads of love in the time of cancer. How do I face fear and loss and the paradox of staying a vixen, a caregiver and an independent woman?

Thursday, November 6, 2008

Love and Buttons

It’s chemo day again. Number eleven. Feels like it came fast this time. Neuropathy continues and may be accelerating. The Oxalyplatin is gone but now I know that the nerve damage is just that, damage. I read all about it online. Scary prospects. Hands and feet. Will he play the piano again? Play golf again? Be able to drive if the damage doesn’t slow down? And the other things that he does with these hands, these precious sensitive hands? Again, Cancerland is blind to sex. They talk about being able to button buttons but what about being able to create pleasure? What would upset you more: buying pullover shirts or giving up sex?

Tuesday, November 4, 2008

Lung Cancer

OK. It is now November. Breast month is finally over. All the little pink titties can get put away and we can now talk about who dies of cancer. Lung cancer is the number one cancer killer in the United States. 30% of all cancer deaths are from lung cancer. It kills three times more men than prostate cancer and it kills twice as many women as breast cancer. But do you know anyone walking, shopping or wearing a ribbon for lung cancer?

Think about this. It’s a horrible cancer. Little effective treatment or prevention and it’s pretty much a death sentence. And a fast one. Maybe that’s why we can’t face it? But these are our lungs—our respiration and inspiration. Lung cancer kills across age groups. And its not just smokers. We do a great disservice with that focus on smokers. It’s cancer.

Take a deep breath.

Monday, November 3, 2008

Visiting Mom

This weekend we visited John’s Mom. She hasn’t seen him since summer so it was a chance to reassure her that he is mostly okay. I really saw that she is a mother looking at her child and worrying about his health and his life. I see him as a 57-year-old man and for a bit I forget that is not what he is to her. This is her sweet boy. Her husband died of cancer, her best friend died of cancer and her son has cancer. She doesn’t say any of this and she is careful in the questions that she asks, but I saw a mother looking at her child and her child has cancer.

Friday, October 31, 2008

What If the Opposite is True?

I had a powerful experience yesterday. I was—as I so often do—mentally rehearsing a situation in which I believed that I was going to have a big conflict with John. I was imagining a scene in which I would be left out, disrespected and not important. Given that I was gathering emotional ammunition and preparing both my attack and my defense”: “He should…” “It’s clear that…” “If you loved me…” etc. And in my mind I was going over this again and again working myself into a state of fear and frenzy.

And then—seemingly out of nowhere—I pictured the very scene happening as I thought he wanted and I saw that it was perfect; not only was he right but that if he did it the way he wanted it would meet my needs more clearly. It would make loving each other easier.

The contrast was so sharp and so startling that it really stopped me cold. There I was, ready to make a scene and let him have it-- and being the nice guy that he is he’d probably do it my way just to please me. And if I had my way I would be the loser.

The realization was so stunning and my error so dramatically off that I began to think: What if I have it backwards? What if other things that I object to or fear are like this too? What if the exact opposite is true?

Thursday, October 30, 2008

Conversations at Chemo

It’s a funny thing. We end up having these important conversations while he is receiving chemotherapy. It’s a public setting and stressed in its own way. Surrounded by people who are sick or dying or getting well. Caregivers sit at the feet of their loved ones. There are several TV’s on and lots of chatting and joking and movement as nurses check machines and add bags of chemicals and insert IV lines and jam needles into patient’s chests. In the middle of that, almost accidentally, we fall into these profound conversations about our lives, our relationship and our love. Maybe, surrounded by all that living and dying it’s not surprising after all.

Wednesday, October 29, 2008

Being Real

Today I decided to take the risk of being real. This morning after we made love a huge wave of sadness hit me. Just a tsunami of grief, regret, sadness that would not lift. I did Pilates, drank coffee, said prayers, did my hair and make-up. But it would not shift. Was it the sex? Feeling close and then the rush to leave the house? That echo of other days when lovemaking was followed by hurried good-byes? Was it the weather? Cold and rainy and the first prediction of snow? A sadness and missing my other life when a snow day was fun and meant laughter and play? Was it cancer and caregiving--Always at the ready to break my heart? All I knew was that it was heavy on me and would not shift.

Now on top of that was all the internal “good girl” and “good girl friend” voices telling me that I need to be happy and bright and upbeat. The inner voices, Thanks Mom--that says “don’t be a drag” and “he doesn’t want to hear from you when you feel sad.”

But then I thought, “So is this a real relationship or not?” If we are a couple then he gets to see the good and the bad, the happy and the sad, the easy and the hard.

So I decided to be real and I called him and left a message saying how I really felt. I decided not hide who—and how—I am.

Tuesday, October 28, 2008

Writing Obituaries

I was telling my friend Leslie last night of my fear that his obituary will name only his wife and trying to anticipate what that might feel like someday. But then we decided that we needed to write our own obituaries. So we agreed that we need to be able to complete this:

She is survived by WHOM? And she was most proud of her work on WHAT? Her friends will remember her for her love of WHAT? But she most enjoyed WHAT? In our community she was appreciated for WHAT? All of her life she was deeply committed to WHAT?

Monday, October 27, 2008

Feeling Trapped

A miserable Saturday night. I worked so hard all week and then chores all day. I wanted couple time or fun or sex or something to delight and distract. But he is in a chemo coma: asleep or in a fog. I feel trapped, lonely, frustrated and resentful. I am going through all this just to be left alone at the end? And the obituary will say, “Survived by his wife of thirty years”.

What the fuck?

Sunday, October 26, 2008

The Big Eraser

It’s chemo weekend and his fatigue is kicking in. When they talk about fatigue as a side effect of chemotherapy they don’t really explain what it’s like. If you haven’t had chemo or haven’t seen someone on chemo you might think this means they get really tired. It’s so much more than that. It is as if a big eraser comes and starts to rub the person away. They get sleepy, yes and dull, yes. But they also fade and their edges get blurred. It’s not like this is a tired person but more like the person is gradually disappearing. It’s lonely and a little scary. There is a body here but not really a person.

Saturday, October 25, 2008

Touche Eclat

A beauty tip for caregivers: You will look tired. Your eyes will age. It’s the crying, lack of sleep and psychic distress. You’ll want to look better and may make the mistake of thinking a bright lipstick will help. No. No matter what your mother used to say she was wrong on this matter. A bright or dark lipstick will only make you look old and yes, make your eyes look more tired.

Here is the solution: Touche Éclat, a concealer and highlighter by Yves St. Laurent. The absolute best. You can layer it on all day and never a build up. It’s not cheap. But neither is chemo. This is your co-pay.

Friday, October 24, 2008

Thy Will Be Done

In my class last night a woman told a story about when her first baby died and her mother—after seeing her suffer—came to her and gently said, “You have been saying the Lord’s prayer for many years. The part about “thy will be done” is for real. It includes even this.”

I sat there and heard that and thought, “Oh, shit.”

Do I mean it? About my life? My relationship with John? His cancer? All of it?

Wednesday, October 22, 2008

Virginia Woolf

I’m preparing to teach a class on the Literature of Caregiving and I find this sentence from Virginia Woolf in “On Being Ill”. Francine Prose calls this “one of the most complex and virtuosic sentences in all of literature”:

"Considering how common illness is, how tremendous the spiritual change that it brings, how astonishing, when the lights of health go down, the undiscovered countries that are then disclosed, what wastes and deserts of the soul a slight attack of influenza brings to view, what precipices and lawns sprinkled with bright flowers a little rise in temperature reveals, what ancient and obdurate oaks are uprooted in us by the act of sickness, how we go down into the pit of death and feel the waters of annihilation close above our heads and wake thinking to find ourselves in the presence of angels and the harpers when we have a tooth out and come to the surface in the dentist’s arm-chair and confuse his “Rinse the mouth-rinse the mouth” with the greeting of the Deity stooping from the floor of Heaven to welcome us—when we think of this, as we are so frequently forced to think of it, it becomes strange indeed that illness has not taken its place with love and battle and jealousy among the prime themes of literature.

I counted them for you; that sentence has 181 words.

Reading and Writing

Being a writer will make you a better reader. Not because of some cognitive or intellectual process but simply because if you are supposed to be writing, and you are afraid to begin, the very best procrastination is reading. So if you promise yourself that you’ll do a lot of writing that’s a sure fire way to get a lot of reading done.

I Feel Bad

A woman at work asks about John. “How are things?” she says. She does not actually say his name. I tell her “it’s all relative. He is back to work, but…”

“He is so positive”, I say, “and he doesn’t talk about the pain.” I worry that others will not know that he is in pain. “And why do you care about what they think?” she asks. And I tell her that I am afraid that people won’t know that he is in pain and they may expect too much from him.

“Maybe” she says carefully, “Maybe you want people to know that you are in pain.”

She has nailed me.

I am in pain and there is no way to admit that. It feels like there is no acceptable way for that to exist. He has cancer and chemo and pain and neuropathy and fatigue.

What do I have?

Worry, grief, anger, and fear.

Tuesday, October 21, 2008

When I am Sick

This morning on my way to the YMCA I got very sick, very fast. It was on and off so suddenly that it was probably something I ate but for the hour that I was ill my head raced to all kinds of places. Can I be sick too? Can I be sick when he has cancer? Who will take care of me if this is real illness? For an hour I went thru every scenario. All about scarcity: Is there room for me and am I allowed to be unwell? The vulnerability I feel in general became very specific.

Monday, October 20, 2008

The Elegance of the Hedgehog

I did a lot of reading last week at the beach. One of the best books was a new novel called, “The Elegance of the Hedgehog” by Muriel Barbery. There were so many pages I underlined and starred in the margins. Here is one bit that felt true to love in the time of cancer:

“When illness enters a home, not only does it take hold of a body; it also weaves a dark web between hearts, a web where hope is trapped.”

Isn’t that an incredible sentence?

Sunday, October 19, 2008

What Stands Behind Me

I’m getting ready to leave the Cape and head home. Looking forward to seeing John and to being warm—it was cold here last night and a propane heater doesn’t quite cut it below 50 degrees. I went to the 6:30 am AA meeting today and gave hugs and got phone numbers. I see the gift of the AA community anywhere in the world. I am part of a community and there is this legacy of recovery behind me and millions of people who are willing to help another recovering person. I felt it today.

I have a community here to return to no matter what happens to John or between me and John. I’m touched by so many of these people that I have known only on vacation. Amy laughing about seeing Madonna in Boston last week. James, a chef, sober one week, and I got to hear him every morning of his first week and hear about using yogurt to marinate lamb (the enzymes in yogurt break down the tough fibers and make the lamb extra tender). Doug and Jay who share 22 years with me.

I lost so many people in my life and I especially miss my brothers. But look what I have even here at the Cape: James and Jay and Doug. Sober brothers and a huge recovery family standing behind me. All I need to do is ask.

Saturday, October 18, 2008

Language Lesson

I learn a lot from John but today I got a really important lesson: Language creates reality. I can create my reality by how I speak about my life and my experiences. Last night he was telling me about the very painful mouth sores he has now and I said, “That’s awful.” and he said, “No, it’s not awful, it’s annoying.”

Now I had heard him before describing the side effects from chemo as annoying and as inconvenient but I just took that to be his stoicism, maleness, macho-guy stuff. This morning I replayed his words in my head and I got it. If something is awful or terrible then you are trapped. But if it is annoying, well, that’s all it is. You feel it, you deal with it but you go on. It’s affecting you but it doesn’t have you. It can’t rule you and you are not a victim.

All of a sudden I could see that the words I choose are making my life actually BE one way or another. His cancer may be a tragedy, an awful thing, or simply something that is happening in our lives. How many times do we say “the power of language”? I want to play with this, watch my words, and see if I can create a new reality for my experience now.

Friday, October 17, 2008

Being Happy

I am happy today. I have been happy for several days. I am at the beach alone and happy. I think of John. I talk to him at night and hear about his day. The side effects are getting worse. The chemo this time is the hardest he tells me. His mouth hurts. The sores are bad now, open and bleeding. I take this in. I care. I worry. But I refuse to stop being happy. I see my mind trying to catch me, sneaking up on me with, “What if he has to go to the hospital this week?” and “What if he gets really sick at work?” It gets me for a few minutes. I take the bait and follow the fear. But then I remember; I am happy and I am allowed to be.

Waiting for Crumbs

I take my donut and my coffee to the beach each morning. I sit on a log and eat and pray and listen to the ocean. I’m alone on the beach and that is one of the miracles. One of the most popular beaches in the world and I am alone. Yes, there is a God.

When I’m sitting on the beach eating my donut the seagulls arrive. They stand a few yards away and look around occasionally glancing at me. They try to look nonchalant but they are waiting for the crumbs. Sometimes I’ll toss them a bit of my donut but usually they have to wait until I am done and then they come for the crumbs that have fallen on the sand.

I do not want to be like one of these gulls. I do not want to stand just off to the side waiting, acting like I am casual and unaffected, but hoping for crumbs.

Thursday, October 16, 2008

A Day at the Beach

I am at the beach and having my week alone. The cottage I rented is perfect. It’s like a doll house. A one person house with living room, office area, small dining area and a kitchen. There is one small bedroom with space for one double bed, a night table with clock and lamp, and a small built-in counter that serves as a vanity. There are lamps everywhere. This is a house for reading. The woman who owns the house is a photographer and it makes sense. It’s a teeny tiny house with perfect lighting. Anywhere you sit you can also read.

I have come here to write and I have come here to remember me. I need to remember me before him. I need to feel my edges again. I need to recall what I like to read, eat and watch on TV. That is one of the surprises. Watching the tiny television—everything is doll sized, my sized—I watch Gossip Girls and Desperate Housewives. I do not watch baseball. In the car I listen to WGBH—Boston’s NPR station. I like the news, I like the political analysis. This is better NPR than we have at home. I brought music and I brought spiritual talks on CD but I love listening to WGBH. I do not listen to music.

I do not wear makeup here. I take a shower at midday after I have been writing and after I have been to the beach. My hair is fine without a blow-dryer. I look at my face without makeup. This is my face. This is me.

I am at home here. Inside this cottage and inside of me. I do not want to give this up.

New Shoes

I bought two pairs of shoes on vacation. The first are Cole Haan moccasins. A perfect saddle tan color that will burnish with wear and earn a lovely warm patina. My 15 year-old Coach moccasins were worn and torn beyond repair. I loved them from the day I bought them and every day for 15 years. The cost-per-wear on those old Coach mocs was excellent. They may have even begun to pay for these new shoes.

The second pair required more deliberation. I saw them on Tuesday and tried them, walked around the store, put them back, tried again. Then I left the store and came back Wednesday and tried them on again. These are boots, also a saddle-tan color and western looking with out really being a cowboy boot. They are above the ankle and have a 2 and a half inch stacked wooden heel. I felt tall and strong in these boots. Not Nancy Sinatra, no whip and no stiletto, but these boots are made for walking. Something in these boots I need right now. They make me taller but I can stride in them.

Why shoes? Does any woman have to ask?

Two Stories

It is said that there are only two stories: A man goes on a journey and A stranger comes to town. When I talk to people who want to write about their caregiving experiences I ask them, “Which one is your story?” There is no right answer, of course. Cancer is a journey that men and women can go on-patient or caregiver. And certainly Cancer is a stranger that comes to town.

Thinking about John and I today and the way that we see this story, how we construct this narrative. Then I think about the way this story affects those around us. There are many stories in this story. Many journeys and many strangers.

In my story John is a stranger who came into my life five years ago. I never expected then what would happen. I was a stranger in his life too. He called one day to ask me to be a guest teacher at his school. We had never met. Then another stranger came to town: romance, infatuation, seduction, sexual desire. The erotic stranger and the romantic journey. We went on that journey. Then another stranger, cancer came into our lives. First it came into his body, then into our lives. After that many strangers arrived in fast succession: gastroenterologist, surgeon, oncologist. I could even tell you how fear arrived as a stranger in this story but for me fear is not a stranger, rather a familiar through troublesome companion.

In John’s life I was a stranger. He knew my work but not me. We met for coffee as two strangers and five years later we have a joint checking account, friends in common and a really nice coffee maker. We have been on one big, messy journey with many small side trips. John certainly is on a journey with colon cancer. Life, death, sickness and health are all rising like monuments around us. He is on an emotional journey too; ending a long marriage that included wonderful things: two great sons, a good wife, sweet memories, love and a vision they al had together for a future that is irreconcilably changed.

John’s wife certainly had the experience of a stranger coming to town: this other woman showed up and--in certain ways of constructing a story “took” her husband away. (That I could take a man from a life that he wanted does make him unenviably weak and pliable. But still it must feel that way.) Even worse must be the realization that the man she loved and knew became a stranger. And the journey, yes. It is a journey to remake your life when a relationship ends. Some people go to the end of the porch and stand with arms crossed and say, “I won’t go.” Others say “OK, I’ll go if I have to.” Others still may be able to say “Bring it, baby.” I have been on that porch and I have had to go on journeys I didn’t choose. I know all of those responses.

My husband too. I became a stranger to him, and John is a stranger who came into our “town” with terrible consequences. In his grief my husband has gone on a journey with fierceness and a strong sense of honor. Will we become strangers to each other? Or will we now go on a journey together crafting some kind of post-married relationship?

Survival Rates

Today’s newspaper reports on cancer survival rates. Colon cancer has a 59% five-year survival rate for men. I take that in. Right away I see my thinking: is the glass half full or half empty? 59% can mean he’s likely to survive, better than 50% or I could say that 59% is pretty poor and that people with most other cancers have better odds of surviving their disease.

I have moved back and forth on this question of prognosis for months now. Three years? Five years? Two years? What does this mean for John? What does this mean for me? Should I keep believing that we’ll have time together? Should I accept that this relationship is time limited? And if I accept that this is time-limited, then what does that mean in terms of how I spend my time, money and emotional energy?

The bad news is obvious. I may lose him, may be losing him right now. We may not have time to make a married life. But the good news is also present in the limits of our time and that is all about being in the present. I say to myself: “Stop thinking about the future. Stop thinking about later and married. Be here now. Be in this relationship –as it is—now”. Can I do that?

Sunday, October 12, 2008

It's Vacation Time

I'm heading to Cape Cod for a week alone. Writing, beach walks and beach surrender. When I look at the ocean I always know that there is something bigger than me. I’ll also have a daily AA meeting. There is an AA meeting everyday in Eastham, Mass. that starts at 6:30 AM. The beauty of these early meetings is that the meeting begins before my ego is awake. Friends are cooking for John this week. I'm trusting God, myself and John that taking care of me really does matter. I also know that if I don't go away now I never will; it's got to be part of this relationship that I have a life alone and that I take vacations and go on retreats. I’ll be back in a week. More to come.

Thursday, October 9, 2008

Whose Drama is It?

His brother says “I guess her view of things is more dramatic.” “Things" meaning cancer, chemo and caregiving. Maybe it was an innocent comment but I got dramatic when I heard that he said that. Part of the problem in this caregiving dance is the discrepancy between John’s presentation of his situation: “I’m fine; neuropathy is annoying, but I’m really quite ok.” Versus my view of this situation: He’s sick, tired, in pain and not able to do many things he did before which does make this hard for me.

Now here is the caregiver dilemma: Is he supposed to whine more so that I don’t look dramatic? Am I supposed to not admit that this is a hard experience because that may imply that he’s giving an edited account? I feel caught in the gap between what he’s telling and what I am experiencing. His brother—rightly perhaps, hears from John that he’s “fine just fine” wonders at my profession of difficulty and requests for help.

OK, for the record this makes me really sorry that I asked for help. Yes I am pouting now but this was my worst fear: that someone would think I was incompetent or unwilling to be the caregiver and this brother is suing the word “dramatic.” Ugh.

What it comes down to is that John has cancer and is going thru chemo and that is his real experience and he gets to tell whomever or no one about what that’s really like. He’s using a careful blend of denial and macho persona. I am not having chemo but I am having caregiving and it is exhausting. So do I accept his view of the world and invalidate mine? What are the politics of caregiver and sick person? Whose reality is it? And for what audience? If there’s a drama here then there has to be an audience.

Monday, October 6, 2008


This morning I went for my annual mammogram. It’s never been an issue. No history of breast cancer in my family and no “breast problems” as they delicately ask at “The Breast Center”. (How come no “Colon Center” with special snacks and pretty changing rooms?) My only breast problem over the years has been finding the right bra—too small for most really sexy push-ups but just a tad too much for going braless.

But since last night when I put the reminder and the mammo script on my calendar for the morning, I began to imagine, What if they say, “Please wait for the doctor”? What if they say, “You need to come back?” Over coffee and in the car I tortured myself with trying to imagine what I would do. Would I tell anyone? Talk to my therapist first? If I had cancer what would that mean to John? To lose the breasts he is so crazy about? Would I do chemo? How in the world could we both have cancer at the same time? Who would take care of me? What would become of us?

Before John's colon cancer diagnosis a mamogram was just a chore, something to put off or take care of. Before the day of his colonoscopy I was aware of illness and death--my family has died--but I never had to hear, "You have cancer." Now I know how ordinary those days can be and how your life --and the lives of those who love you --can change in a few words.

It didn’t help that in the waiting room of The Breast Center there were men waiting. They were accompanying their partners who did have “breast problems”. The long wait, surrounded by pink everything (Yes, fear that I will be punished for my arrogance was a possibility too), didn’t help. Finally into the room and push and pull and smoosh and tear—small breasts just don’t fit the machine-- my neck stretching to get enough chest tissue onto the plate. “Hold your breath” the technician says—as if I had even been able to take a full breath since leaving the house.

Sunday, October 5, 2008

New York City

Yesterday was a New York City day. A late birthday gift from John. Tickets to see EQUUS. The actor playing Alan Strang is Daniel Radcliff of Harry Potter fame. All grown up now. From Quidditch star to sexual psychopathy.

It's a powerful play in the ways that it questions sanity and questions what is real passion. When the psychiatrist speaks to his friend about how he lives a brisk, tame life pretending to be interested in the primitive but this boy he is supposed to "cure" acts out something deeply primitive and lives real passion--but at a cost that is self-destructive, I wept.

We were both so moved by the play and it's call to passion and the parallell in our lives that we sat until the theater was empty.

We also went to the Morgan Library to see the Babar exhibit. One of the touching parts of the story was the realization that Babar was drawn by father and then son. Babar was such a caring father to Pom and Alexander. I wonder at the hurts each time John looks at fatherhood through these slant lenses and wonders at his sons and how they pulled away when he has cancer.

Friday, October 3, 2008

Purgative, Illuminative, Unitive

In my class on spiritual direction we are talking about the stages of spiritual development: The Purgative Stage, The Illuminative Stage and the Unitive Stage. These come from the writings of St. John of the Cross. The purgative is excited, animated, interested. This is the honeymoon. Then God calls us from that and the call feels like annoyance, boredom, resentment. The honeymoon is over. The new path becomes ordinary. This is the Illuminative way. The exciting, amazing God becomes real, comfortable and flawed. Then if we can persevere through this we enter the Unitive Stage. We are aware of our part on greater humanity. Others hurt and suffer. Faith transcends intellect. We may leave the church but we join the world.

Caregiving too has these stages. At the start we are scared but also excited. So much to do and so much to learn. Facts, science, vocabulary. Another world is revealed. We are initiated. Then reality sets in and ordinary time. We are tired, bored, resentful. But this too may be the call to ordinary fidelity to caregiving. The slog. Ken Wilbur writes about this as “Chronic isn’t interesting”. If we survive this we begin to enter compassion with the world. Everyone has something. There is death and grief all around. But rather than be depressed we see the joy that exists in being part of humanity. Death is near by and we choose to live.

Thursday, October 2, 2008

Playing with Clothes

One of the tips that caregivers receive is to do one thing each day that is just for fun. Stay connected to the things that give you joy. They often mention massages, and pedicures and always, always bubble baths. I tried all of those but a manicure isn’t fun. It's just maintenance. And a bubble bath is too much like those dam smoothies. It has the ring of platitude to it.

What is fun for me is playing with clothes. I love fabric, fashion, design and color. Maybe a leftover from Barbie and paper dolls? Or maybe I loved Barbie and paper dolls because this love of line and design was already there when I was very young. Recently I have been making clothes from clothes. This weekend I made an empire style top by inserting a beautiful scarf thru two small slits in the sides of an old gray tee and then pulling the scarf to the front in a knot. A nice combination of grey knit and Hermes silk. Sexy. And it looks great with jeans.

Wednesday, October 1, 2008

Money Matters

We are making a budget and paying bills. We are tracking expenses and balancing the checkbook. We talk about what we need and how the money comes in and goes out. It is the most mundane thing and the biggest deal. We look at the expenses and obligations we incurred in our other lives and we talk about how our past lives and marriages impact us financially and how that affects us as we move forward. It is another kind of intimacy and I feel its power.

Tuesday, September 30, 2008

Suit Up and Show Up

One of the things that is hard right now is work, or rather my attitude about work. I don’t feel very motivated. I know that I have “a lot on my plate” as everyone tells me. But I struggle to have this fraud or imposter syndrome now have real fuel. I am supposed to be the ambassador and champion for my organization but I don’t feel it and have to make myself really be present every day.

I have talked to my therapist and to friends—all the “You have a lot on your plate”. But still, what to do?

I borrow this from Alcoholics Anonymous: “Suit Up and Show Up.”

So each day I dress for work. Dress as if I care; dress as if I really mean it; dress as if I have the motivation, passion and commitment. Dressing the part does seem to help. But under that? I still worry.

What will happen if my energy and interest in work does not come back?

It doesn’t help that John loves his work and goes out of his way to go to work even though he has cancer and chemo and doesn’t feel well.

Yesterday his doctor offered him a doctor’s note. Kind of a hall pass for grown-ups or a Get out of jail free card. I laughed and asked if I could have one. I wasn’t kidding.

Monday, September 29, 2008

Addiction to Fear

Last night I lay awake from 2am until 6am. In the first hour I was running an inventory of all the bad things that could go wrong in my relationship: he will do this or that; he will say this or that; he could get sick, die, leave me, love someone else. With each one I complete the thought with my possible response: I will say this or that; I will do this or that and always, always: I will feel terrible.

Now what is interesting is that I don’t need any of those things to happen to actually feel terrible. No, efficient gal that I am, I have already made myself feel terrible just by running through the scenarios and previewing or rehearsing the outcomes. The effect: I feel like shit.

It’s not new behavior. I have done this most of my life. I suspect I started this as a kid but then it was just background music. The sound track to a scared kid’s life. It was, I suppose, to be a kind of inoculation. If I can imagine it then I can be prepared for it maybe? But it took on a life of its own. Now it’s a habit.

It is an addiction too I realize because it actually produces a physical effect. I release adrenaline and cortisol into my body. Hence awake in the wee hours. That also is not new. I have been able to make myself crazy with rage or grief or terror with scenarios that never occurred. I produce the emotion and the physical effect.

You can imagine how good this is for the relationship.

But last night awake in bed and then in the living room I was able to see this from a slight angle. Maybe I was just tired enough to watch myself do this and I asked myself: If I spend 90% of my thinking time creating scenarios to scare myself what would I instead think or feel if I could reduce that by say 60%? I’m not sure I can stop this addiction to fear or this habit of shooting up my own adrenaline using only my mind but if I could interrupt it and reduce it what would that produce?

Sunday, September 28, 2008

Two Trains Running

There are always and only two trains runnning. There is life and there is death. Each of us rides them both. To live life with dignity, to celebrate and accept responsibility for your presence in the world is all that can be asked of anyone.

--August Wilson,

Saturday, September 27, 2008

High Heels

I am craving high heels. Specifically red high heels. I tried on a pair at Ann Taylor and wanted to walk out of the store in them. The thing I liked was that tiny bit of red peeping out of the front of my jeans and the way that stiletto heel looked in profile against the boot cut of denim. They were the wrong size but I almost bought them anyway. Then I tried another pair at J.C. Penny. That pair had a small platform and they were $25.00--more reasonable for shoes that are pure whim. Oh yeah, both pairs were red patent leather. Red patent leather high heels. I mean, could anything be more slutty? Oh and yes, both pairs were peep toe. They could easily be in the Victoria’s Secret catalog or in the Frederick’s catalog for that matter. I didn’t buy them but I came close.

So what gives? It’s chemo weekend and I am craving red high heels. Is there a connection? Maybe I have had too much therapy or read too much New Age philosophy and I think always that everything means something else.

It’s about desire for sure. But desire for what? The obvious: sex. Red patent leather peep-toe high heels are about sex, and sex is about life and energy and vitality. Maybe these spiked heels are a way to stake a claim for my energy and vitality. I’m not dying; I want to flash a neon sign that says: see me, feel me, hear me coming.

Friday, September 26, 2008

Grace and Grit

I just read Grace and Grit by Ken Wilber. It’s the story of his relationship with and death of wife Treya Wilber. She was diagnosed with cancer the week they were married. Lived five years with multiple surgeries, treatments and recurrences. The power of the book is that her writings about the relationship and her cancer experience are woven into his story. Both perspectives are available. The other power is the honesty. He writes about his fear and sadness, the ways that he coped, what he gave up, his resentment at giving up so much and powerfully he describes the lowest points when he hated her and she resented him. It’s all there. Then too he writes about how they climbed out of that, got help and the spiritual work for both of them in the last six months of her life.

What helped the most? Reading his take on the pain of caregivers. He describes caregivers as having two problems: the person they are caring for and the dismissal of their own needs and struggles. The tendency of caregivers to discount their own issues—“nothing equals cancer”—but that means it gets harder because the caregiver has whatever the problem in their life is and they have the impacted feelings and resentment. Not pretty but really helpful to see it described.

He also talks about the value of support groups and how much hate is expressed in a support group for caregivers. But what is powerful is that he sees that resentment and all that dark shadowy material as the consequence of the caregiver forgetting how to give love. As Wilber says, if there was no love they would have left already or just become cool. The anger and even hate is the sign that there is love and the caregiver has to find energy and a way to give love again.

Thursday, September 25, 2008

One Hour at a Time

Today is the start of chemo number eight. Part one is time at the oncology center and then 46 hours of wearing the infusion pump through which John receives the dreaded 5-FU. This morning I started saying to myself “One hour at a time”. That has to be today’s mantra. I have a work meeting at 8am, then race to the office, then drive to meet John at chemo, I can prep for my evening class while he receives chemo, then home to meet the visiting nurse to get the infusion pump started. Once he is settled I am off to give a workshop—for caregivers no less and after that I head to school to get at least an hour of my night class. If I just look at the next hour: dress for work and drive to the breakfast meeting I can do this.

Wednesday, September 24, 2008

I Don't Want to Miss Anything

I don’t want to miss anything. That is the opposite pole to I can’t do everything. Yes caregiving is hard; yes loving a man with cancer is stressful. Yes I am scared. But I don’t want to miss this. We didn’t choose cancer. We never imagined that in our first year together we’d be facing cancer and chemo and scary doctor’s appointments. A year ago e had planned a very different life together.

But cancer it is and chemo too. It literally is a relationship on steroids.

I say to myself yes it’s hard and I am scared. I could lose him but I don’t want to miss this. This incredible man is with me and in front of me and he has cancer and I don’t want to miss one second of it. That’s what also makes asking for help difficult. I want to do everything. I don’t want to miss making a meal or going to chemo or even seeing his pain.

I’m not quite at saying I’m grateful but I know enough to know that there are gifts here and they may be hidden in the grocery store, the doctor’s office or in a painful conversation sitting on the couch—and I don’t want to miss that. I don’t want to miss anything.

Tuesday, September 23, 2008

I Can't Do Everything

I can’t do everything. This is my mantra right now. I keep saying it in my head, “I can’t do everything, I can’t do everything…” I’m trying to convince myself that this is true and that it is OK.

But it’s also true that I have done almost everything and I do a lot. I have always managed to do so much: a job, home, writing career, community work, recovery, a busy social and cultural life and some amount of self-care. I get things done. I do more than the average bear.

But now I can’t.

It snuck up on me. One errand too many. Having to take care of the car by myself, or do the grocery shopping all the time now. The dry cleaning. The small things he cannot do because of fatigue or neuropathy or pain. Something has to give and it’s not as easy as it might seem to discern what that is.

Will my job matter five years from now? Probably not but we do have to pay the bills and if he gets disabled because of chemo then my income is all we will have. Writing? Do I give that up? What happens to my soul if I walk away from that? Besides writing is how I cope and how I know what is happening inside and around me. Hence, this blog. Community work? Yeah, most of that can go for now. The errands, yes reluctantly I can let people help with those things.

I am working my way to this. I am trying to get it. I can’t do everything.

Monday, September 22, 2008

Nothing Equals Cancer

This is one of the hardest things about being a caregiver in CancerLand: Nothing equals cancer. I may have aches and pains, trouble at work, struggling with the loss of a friendship or just feel really bad. But nothing equals cancer. Others suggest or hint at this but I do this most to myself. I make this comparison. Am I going to complain that my hip STILL hurts; am I going to fuss about my job and have the “What will I do when I grow up?” conversation again; will I talk about my worries and how being a caregiver in CancerLand feels really hard?

But the voice in my head says, “Hey, you don’t have cancer. You’re not doing chemo. You don’t have to fear death”.

I know that not having cancer and being around someone who does is supposed to give me all kinds of positive and perky perspective. That old saw about the guy with no shoes meeting the guy with no feet. But you know what? That never made sense to me. I mean, the guy with no feet doesn’t need shoes so he’s not gonna understand a shoeless guys pain. Besides they are both in pain. And you never know: the guy with no shoes may be the one who hurts the most. It often turns out that way.

So no I don’t have cancer but I still have hard and scary things in my life. But it’s hard to take myself seriously and it’s even harder to ask others to take my pain seriously because:
Nothing equals cancer.

Sunday, September 21, 2008

Let Them Help

Another conversation.

A friend wants to organize folks to prepare and deliver meals.

“Just one a week” she says. I’m stalling. I tell her, “He’s going to work, he’s OK.”
“This isn’t for him”, she says, “This is for you. You need the help.”
I am reluctant.

I keep thinking we’ll need food later, need more help later. I live as if there is a finite amount of help and I don’t want to use it up now while things are relatively manageable.
I think they are but “relatively” is key.
I am stressed and I know it. There is no downtime. I get angry in the car. I feel like every second of my life is scheduled and accounted for. I have a list on my desk and a list in my purse and a list on the passenger seat of my car. I can’t breathe.

John is tired. Yes, he is back to work but that’s all he can do.
I have my job, my writing and then all the errands.
Having some one else prepare a meal once a week would be great. It would cover two meals and cut down on shopping and cooking. John can’t help with those things because of the sensitivity to cold and the neuropathy. He can’t shop or cook.
But I am stalling.

Asking for help means something.
It means I cannot do this alone.
I want to be the one who takes care of him
And I can’t.
That feels really bad.

Saturday, September 20, 2008

Facing The Feelings in Cancer and Caregiving

Friends have been shocked by my admission that I have had feelings of jealousy around John’s cancer. Others—who are caregivers --have said, “Yes, I felt that too” but they are sheepish or ashamed that they had what seems a terrible thought.

I have a fierce feeling about this: I don’t want to deny any of the thoughts or feelings that I am having as I go through this experience. I don’t want to miss this experience. I am living this and that is bad enough. I don’t want to add denial and pretense to the mix.

I learned a long time ago that there are no feelings that someone else has not had and few things that we have thought or done that someone else has not thought or done. I know that when someone—hearing of a shocking incident or a stunning admission says, “Can you imagine?” that the correct answer is always “Yes”. We are most often horrified by the things that we can imagine rather than the ones we cannot.

It is also why I am writing this blog. I want to record in one place what this was really like. I want one person to know how good and how bad loving someone with cancer can be. I want to challenge myself each day to skip the platitudes and the saccharine and face head on what this relationship with love and cancer is really like.

Thursday, September 18, 2008

I Want Cancer Too

My doctor leaves me a message. She has the results from my recent blood work. I’m nervous. A call from a doctor has a new layer now—even for routine things like a physical or test results. Will she tell me that my Cholesterol is lower or will she say, “There is a problem.” I think of Jane Kenyon dying before her husband who had colon cancer. My imagination takes off. I imagine bad news and what would I do? I think, I could not do chemo. I could no do what John is doing.

But there is another layer to my imaginings. Maybe I could have cancer too and then we could share this. Some part of this is about wanting to be important and special—like a four-year-old who wants a broken arm or crutches like the other kid. But under that is this: I want cancer too so I don’t have to be left alone.

Wednesday, September 17, 2008

His Wife

His wife is part of our relationship and she is in my mind every day. The thing I fear most is losing him. I could lose him to cancer or I could lose him because he will leave. When I think about this and when I feel this fear and anguish I am aware that his wife is feeling that now. He left her. She has this loss and this anguish. Every month it’s new again: her birthday, their wedding anniversary, the private anniversaries of a long relationship, things only they know and remember, where they were a year ago, the trip they took, the dinner party, the day they went to the play with their kids. Each one a new wound.

I sit with the fact that I am part of her pain. Did I cause it? Could I have prevented it? Did he leave because of me? Did I make him? If I wasn’t there would they have been happy and married 40 years? How do I apportion my part? I can’t absolve myself but is it also grandiose to say I caused her pain? Is it shirking to say he did or even she did? They did I suppose. It was their marriage just as mine was mine.

But I sit here on a cool fall morning and I think, “One day he will not come back.” The day is coming when I will be remembering our days and the pain will be so great.

Across town his wife is living that pain now and I am part of that.

She and I want the same thing: to love and be loved and to not be left. We both fear the man that we love leaving us. Hers now. Mine later.

Tuesday, September 16, 2008

Donald Hall and Jane Kenyon II

I just finished reading “Unpacking the Boxes”, new memoir of Donald Hall. This is 14 years after Jane’s death and he recounts much of the story that he wrote in “The Best Day/The Worst Day”…but now he is farther from it and tells more.

What struck me was how much he missed being her caregiver. The details of daily caring for her in leukemia were so hard but I understood when he wrote that he was with her and caring for her day and night. It meant connection and they were together even though the circumstances were shitty. After she died he missed her and he missed being able to care for her. I realize some days that there is a benefit in this cancer. It’s a connection and a way of being in relationship. No one would wish for this but I am aware that it is a gift of sorts. It sets a strong priority and it makes a bond.

The other thing that Donald Hall—quite bravely—writes about in the new book is his sexual fantasies and his sexual behavior while Jane is dying and after her death. He writes about the voracious fantasies that would flow thru him and how, after her death, he acted on them and wanted lots of uncommitted sex.

It’s a bit scary to read that but startlingly honest I thought. I never believe he didn’t or doesn’t love Jane but that he is carried by body and mind to a very sexual place.

Andre Dubus on Body and Spirit

Andre Dubus (1936-1999)

Here’s a Salon review of his final essay collection:

“Much of Meditations From a Movable Chair, including its title, is haunted by the accident in 1986 when Dubus, then 49, was struck by a car [while stopping to help a stranded motorist], costing him one leg and severely damaging the other. He is too honest and brave a writer to pretend that the accident did not change him in fundamental ways (just as his marriages and divorces and the births of his six children have also changed him) or that he did not suffer from self-pity and despair as well as excruciating physical pain while recovering from it. He consistently describes himself as ‘crippled,’ and despises the journalistic clichés that are invariably hauled out to discuss the disabled: ‘To view human suffering as an abstraction, as a statement about how plucky we all are,’ he writes in ‘Song of Pity,’ ‘is to blow air through brass while the boys and girls march in parade off to war. Seeing the flesh as only a challenge to the spirit is as false as seeing the spirit as only a challenge to the flesh.’”

Sunday, September 14, 2008

How Are You?

Last night we went to the wedding. We appear as a couple in public. We meet people we knew and people new to us. I talk to Bob seated on my right and meet his wife, Christine. He is 80 and she is 60. In making small talk about families and grown children he says, “Well, my children don’t come around much. Christine and I met while I was still married. I fell in love with her and left my wife. I wanted to be happy.” It was more than 20 years ago. We talk about their life and businesses and travels. They are quite happy. I tell him that John and I are in a similar situation. He asks, “Do people try to make you feel bad?” I say, “yes, sometimes.” and Bob says, “Well, fuck them.”

During the evening John and I talk with other guests.
When people say to John, “How are you?” There is a moment of calculation.
Do they know about the cancer or not?
Are they saying, “How are you—given that you have cancer?”
Is it simply, “How are you?” and now he has to tell them about the cancer.

Saturday, September 13, 2008

The Costs of Caregiving

The average caregiver is 46, female, married with children and working outside the home. Although men also provide assistance, female caregivers spend as much as 50% more time providing care than male caregivers.

A four-year study by the National Alliance for Caregiving found that middle-aged women caring for an ill or disabled spouse were six times more likely to suffer depressive or anxious symptoms than those with no caregiving responsibilities. Their symptoms include:

A higher level of hostility
Less personal mastery
Less self-acceptance
A decline in happiness

Compounding this picture, more than one-third of female caregivers provide care to others while suffering from poor health themselves. Women over the age of 50 who are caregivers have a twofold increase in their risk of coronary heart disease. (CHD)

And then at work:

33% of working women caregivers decreased their work hours
29% passed up a promotion, training or assignment
22% took a leave of absence
20% switched to part-time
16% quit their jobs

When I read this today I knew I was reading about myself.

Friday, September 12, 2008


It’s chemo weekend. The infusion pump returns and the nasty drug called 5-FU. Yesterday to the oncology center for several hours then home to the visiting chemo nurse who hooks John up to the pump. These two days the chemo pet we call FU lives on John and dominates our lives. It is tiring. Tiring for him, yes and tiring for me. I am running. To work, then to the oncology center, then home, back to work, then to my night class. Groceries? Dry cleaner? Postage?

Today I feel resentful and then guilty for feeling resentful. I want to take a breath. I want to shop for shoes. I miss my life and I am afraid of losing myself. I want to be able to rest or be spontaneous; I want to call a friend. All I am aware of is what is not done: laundry, groceries. He cannot go to the grocery store or open the fridge because of the reaction to cold. I don’t want to eat and I don’t want to cook but he needs to eat.

What is hard is to sort out what is really him and what is really me versus what is cancer and chemo. Maybe he’d be this selfish anyway? Maybe I’d be this pissed anyway? It’s so hard to step back and see the good. I’m trying to remember who he was before cancer. Was he a nicer person then? Was I?

All I can think of today is FU.

Thursday, September 11, 2008

Before Strongly Desiring Anything

“Before strongly desiring anything,
we should look carefully into the happiness of its present owner.”

Francois duc de la Rochefoucauld (1613-1680)

I found that quote on a calendar years ago and I saved it.
Today it hits me more strongly than ever. For me this can apply to desire for:

A house
A car
A dog
A job
A man

Especially a man.

Wednesday, September 10, 2008

Making Love to Save Your Life

Every time we make love I am grateful—and amazed. It gets better and better and no one in Cancerland told me this was possible. On one hand as we are learn more about each other intimacy grows, fantasies and desires deepen and are safer to explore. And yes there is more humor; we laugh in bed which also means that we can bring lots of other feelings there too: anger, fear, lust and simple curiosity.

But still, who would have guessed that there could be so much sex in the face of cancer and chemo? Well, not until you realize that cancer is a sexual challenge. It’s a sexual challenge not just in the “Your love life may change” language of cancer pamphlets, but cancer is a challenge to the psyche and to libido in a powerful way.

Cancer says, “I’ll take your life.” and being sexual says, “No FUCKING way.”

One fights for one’s life with cancer. We knew that—all the dead metaphors: battle, fight, struggle etc. But one also fights WITH one’s life—literally with one’s libido—the life force, creativity, sex. Libido and life will out.

It’s really too bad that the cancer lit doesn’t talk about this—doesn’t give this option a voice. They could at least tell patients and families: “Yes, your sex life might change. You may have to make adjustments, you may have to cuddle more OR you might just have the best sex of your life.”

Tuesday, September 9, 2008

Beautful Swimmers

Beautiful Swimmers by William Warner is one of my favorite books. It’s is the story of the watermen on the Eastern Shore of Maryland and their counterpart, the blue crab.
It’s all here: how the crab lives, feeds, courts, mates, dies and is eaten. And how the waterman trains, dresses, plans, thinks, prays, eats, and yes, dies. These two --the crabs and the watermen-- are wonderfully and positively co-dependent.

Two of my favorite words in the English language come from Beautiful Swimmers: Autotomy is the remarkable crustacean attribute of dropping a limb, allowing a pincher or leg to fall away as a means of exiting a battle or a threatening situation. Autogeny is the related and accompanying attribute referring to a crab’s ability to grow a new limb to replace the one sacrificed for survival. I could not, the first time I read this, or now, years later, miss the comparison to humans. Wouldn’t it be wonderful to know when to drop something or someone and just walk away, and yes, to also be able to naturally grow that part of oneself again, to make a choice and to be new again?

Sunday, September 7, 2008

Going to a Wedding

Next weekend we are going to a wedding. My friend’s son is getting married and we have been invited. It feels special. The invitation came to us as a couple. That is special. We’ll be attending this grown up and very social affair together. That is special. It turns out that we’ll each know some of the other guests; our worlds intersect at this wedding. That is special.

We talk about someday getting married. I imagine a ceremony on the beach. I have seen a dress that would be splendid for a beach wedding. A peachy ivory lace sheath, knee length that just skims the body. When I saw it in the store I thought, “I could get married in that.” More than once I have thought, “Just buy the dress. Buy the dress so you have it, so you can look at it in the closet and know the day will come.”

But I have also thought, “If he dies that dress will kill me and it will be excruciating to have a wedding dress that was never worn.”

Live in today? Hope for the future? Believe him when he says, “We’ll be married for 20 years.”? Or just be grateful that this week we are a normal couple buying a wedding gift and looking forward to going to a wedding?

Friday, September 5, 2008

Our Relationship with Cancer

It is a double whammy. Negotiating cancer and the relationship. Today we had an OR talk. OR is “Our Relationship” a standard feature of the new relationship: who are we, how are we, where do we go from here, your friends, my friends and why I spend more on shoes and organic food and why you wait for sales and never buy expensive produce.

But now you toss in cancer and chemo. Is he really this selfish or just feeling sick? Am I codependent or a good caregiver? Is he unwilling to make an effort or just tired from the chemo? Is this my habit of pulling away or am I reasonably cautious about what I and we are facing?

I long for familiarity and fear it at the same time. Cancer changes the trajectory and the timing. I want to relax. Ready for that time of no fussing of being able to go “as me”. Can I skip shaving my legs? Can he floss in front of me? Wearing the old tee shirt for pj’s? For any couple there is loss and gain in reaching that familiar place. Less sex, a different romance but more and deeper love. How much is making an effort and how much is taking it all for granted and the pleasure and security in knowing you can. But cancer changes that too. The future is not just ours but belongs to cancer too. We can say what we’d like to do someday but cancer is keeping the master calendar.

Thursday, September 4, 2008

Lying Awake

At 4am I am awake. I look across my pillow and watch him sleeping. He looks like a boy. His short hair slicked back, his strong cheek bones and long nose make a sharp profile. He is handsome and he is asleep. I know that he is in pain but he will not say it. His mouth hurts but he says, “It’s annoying.” He is tired but he jokes and says, “Loving you keeps me awake too much.” It’s true we love each others bodies. But at this hour I am sad and I am scared. In two hours I will make coffee and he will shave, I will go walk and he will read the sports section, I will check my to-do list several times and he will check his email and phone. His sons do not call. They are still angry that he left their mother. She is angry too. All of that weighs on him. But for now—for this moment --he is asleep. I hope, for this moment, that cancer is too.

Wednesday, September 3, 2008


Big anxiety today. All thru my body and in every pore. The most awful feeling. A new year begins the day after Labor Day. This is my favorite time of the year but colored this year by loss and fear of loss, worry about John and worry about me. Will he be OK? Can I do this? What happens when he gets more ill? When the side effects are harder? If he can’t work? Can I support us? Can I support him? Who will support me? All of those questions and more. I try so hard to stay in this day. I write this in my journal:

Be in this day.
Look down at your feet.
Be where your feet are.
(Codependence is looking down at someone else’s feet.)

I keep saying to myself: Be in this day. John is well today. He went to work today. I am OK today.

So much is good but I see movement behind the curtain, just off stage. Something is back there. Something is just out of sight that scares me.


Tuesday, September 2, 2008

Let Evening Come

Let Evening Come
by Jane Kenyon

Let the light of late afternoon
shine through chinks in the barn, moving
up the bales as the sun moves down.

Let the cricket take up chafing
as a woman takes up her needles
and her yarn. Let evening come.

Let dew collect on the hoe abandoned
in long grass. Let the stars appear
and the moon disclose her silver horn.

Let the fox go back to its sandy den.
Let the wind die down. Let the shed
go black inside. Let evening come.

To the bottle in the ditch, to the scoop
in the oats, to air in the lung
let evening come.

Let it come, as it will, and don’t
be afraid. God does not leave us
comfortless, so let evening come.

Monday, September 1, 2008

The Amy Winehouse House Board of Directors

At my fantasized cancer support organization, The Amy Winehouse House (see entry on this blog for July 20, 2008) I have designated a board of directors. Most nonprofits have on their boards some business people and medical folks and what are euphemistically known as “community volunteers” (translation: I don’t work but I have money). At The Amy Winehouse House we too have those we turn to for guidance and advice. These are the folks who help us stay true to the mission which is: Fuck Cancer.

So in the spirit of full disclosure here are the members of The Amy Winehouse House Board of Directors:

Amy Winehouse (duh)
Keith Richards
Grace Slick
Jackson Pollock
Janice Joplin
Darryl Strawberry
Sherlock Holmes
Frances Phelan
Anna Karenina
John Falstaff
Jimmy Hendrix
Joan Kennedy

As you can imagine planning refreshments for the Board meetings can be tricky. And, yes, we do know that some of these folks are dead. You may be asking why that’s important. Well, it’s kind of the point. People die of cancer so these folks are helpful on that side of things. And yes, it has also been pointed out that some of our Board members are, in fact, “fictional”. These too are important Board members. Anyone who has worked in the nonprofit world knows that these are, above all, the best kind of board members to have. You know exactly what they are going to say, and they make a lot less trouble for the staff.

Sunday, August 31, 2008

My Moon is in Cancer

The problem is cancer. Stage three colon cancer and so instead of romantic dates and lunches and vacations we have surgery and doctors offices and learning about chemo. I am lover and caregiver, but I am also a writer and fierce about what is happening to him and to me and to us. I am writing this blog to tell my side of this story. I am not objective. I am not unbiased and at times I am not a very nice person. But then, cancer is not very nice either.

I am also writing this because I hope at least one person can have their sanity confirmed by this blog. Most of the official cancer resources have tried to be helpful but there have been so many gaps and so many platitudes and so very much condescension. I am also writing this because as Mark Twain said, “I don’t want to hear about the moon from a man who has not been there.” Loving a man with cancer is my moon. Take the next step with me.

Saturday, August 30, 2008

Everything Works (plus recipe)

Yesterday I got my hair cut. I have gone to the same lovely spa and salon for many years. Jean, The owner, is French is wonderful at connecting with his customers. When we learned about John’s cancer and chemo I told Jean and asked if he could do something for John—thinking he’d need a much shorter hair to get ready for losing it. The day John came for his special spa haircut all the stylists and their assistants were checking him out. He is very handsome, but it turns out that they all wanted to watch because the gal cutting his hair was giving her first haircut! So there was plenty of audience to cheer her on and to cheer John up.

Because of that Regine, the woman who cuts my hair, knows the story and the situation. When I see her we always talk first about John—his hair, his chemo and how he feels. So yesterday as she’s running her hands thru my hair and we are talking about the color and whether I need highlights again—she is telling me, “You won’t believe this…” Her best friend has just started dating a man with Colon Cancer. Her friend is in her 50’s and the new man is in his 50’s and he has colon cancer and has just completed his chemo. He is happy and they are happy etc. etc.

Then Regine leans closer to me and says in a soft voice, “My friend says everything works.” Pause. Then “You know what I mean? Everything works.” I pause. And then I get it. Her friend told her that sexually—with the new boyfriend with cancer—“everything works.” I laugh. She adds quickly, “Not that it’s everything but it matters, no?”

Yes it matters, I’m glad too that “everything works”.


Regine suggested this recipe for cooking salmon. I made this last night and it too works supremely well:

Marinade salmon filets for one hour in a mixture of half maple syrup and half teriyaki sauce. Bake at 375 skin side up for ten minutes. Turn them over and pour remaining marinade on top. Bake five more minutes at 400. The maple will caramelize on the salmon. Serve with mashed potatoes and asparagus or broccoli.

Friday, August 29, 2008

I am Sick of Him

I sit on the floor in the restroom at the oncology center and cry silently. I feel my life slipping away. I write this in my journal:

I am sick of him.

I am sick of the New York Yankees.

I am sick of his music.

I am sick of the apples he likes.

I am sick of his schedule.

I am sick of the movies he wants to see.

I am sick of him being sick.

I am sick of him.

Thursday, August 28, 2008

Chemo is Coming

Tomorrow is Chemo Day again. John will spend four hours at the oncology center then wear the infusion pump for the next 48 hours. I am nervous each time. What will the blood work say? He has been more tired and his mouth is sore more often now. The pain and tingling in his hands is more frequent so I think that means that the chemo is digging in. Does that mean it’s “working”? Killing cancer cells or just killing all of his fast reproducing cells?

I am recognizing my own unsettledness on this day before chemo. I have the logistics down: I pack the bag: we take books and magazines to read, I take extra magazines to leave at the chemo center (they have terrible magazines there—all about cancer) I also pack our I Pods and snacks for both of us, and take the Blue notebook for taking notes when we meet with the doctor. In this day before chemo I am also bracing myself. I lose him during these chemo weekends and the loss gets longer each time.

He’ll be distracted on Friday, and annoyed by the pump and side effects on Friday and Saturday. The tiredness will begin Saturday so he’ll take more naps and be more drowsy. It’s hard to feel connected in those days. I get needy and so I have learned to make plans for the weekend now.

Being at home watching him sleep on the couch or being aware that he has more pain makes me feel lonely and afraid. Each time I lose a bit more of him and each time I am reminded of how serious this is. I have to watch my own anger too. A couple of sessions ago I realized that in the pre-chemo days I get stirred up and angry. I’m mad at chemo and mad at cancer but it’s so easy to forget that cancer is the problem and instead think that John is being unkind or inattentive or to start to make a case that he is not committed to this relationship. My fears stir and I flail inside. My head starts to tell me that he doesn’t love me, that he will leave me. My heart knows that cancer and chemo are taking him away.

Wednesday, August 27, 2008

Keeping Secrets

In Alcoholics Anonymous we hear, “You are only as sick as your secrets.” The French say, “Nothing is so burdensome as a secret.” My daily meditation book says, “Secrets are a quiet cancer that eats away at our souls.”

That cancer word jumps off the page. I have known the cost of secrets in my life. There were many secrets I kept from others over the years and saw the cost to relationships. I also endured the damage of keeping my family’s secrets: my mother’s addiction, my father’s shame.

But today I know that the most damaging –and most frightening--secrets are the secrets I keep from myself. I worry now, maybe too much, but I fear this: am I telling myself the truth. Am I hiding my real feelings? Not just from John but from me. That’s the big danger.

I have decisions to make. Will I accept the fellowship that means a month away? Will I continue on in my graduate program? If I do is it because I really want these things or is it because other people think I should? If I don’t is it because of John’s cancer or because I am afraid to be away from him now? Am I giving up a part of me that matters or am I grateful for the excuse to give it up? The outsides may look the same but knowing what I really want and need --and telling my self the truth –matters.

Another secret I sit with: I miss my husband. What does that mean? Can I stand to feel that all the way through me? It feels sad and dangerous to allow myself that truth. But I also know that if I shrink from at least telling myself that truth I’ll be in more trouble later. Can I separate admitting that truth from acting on that truth? How will I know?

Tuesday, August 26, 2008

Wendell Berry and Creative Fidelity

I have this quote from Wendell Berry over my desk. He is writing about creative fidelity and creative process. He says:

“…form serves us best when it works as an obstruction to baffle us and deflect our intended course. It may be that when we no longer know what to do we have come to our real work and that when we no longer know which way to go we have begun our real journey. The mind that is not baffled is not employed. The impeded stream is the one that sings.”

If he is right then I am singing. I feel impeded today. I left the house this morning weighted with stones of sadness. My marriage ended to enter this relationship. Was that the right thing? Fall begins soon and I feel the pull of back to school. I love September and the newness of new knee sox and new notebooks. I want to feel new too. But this year I do not feel new. I feel confused and sad and worried. I question myself. I don’t know which way to go. So perhaps the real journey has begun and this odd sound coming from me is a kind of singing.

Monday, August 25, 2008

Widow Part II

So I’m driving back to my office after a meeting today and I think again about this widow thing and why I am poking at my fear of widowhood and it hits me: My mother. Oh yes. When I was 18 my father died. He was 56. I knew that he died when I was young but I only understood later that he died when HE was young. And now that I am 55 it hits me: My mother was young too. She must have been 54. Sadly, I remember how embarrassed I was by her grief. I remember her silly behavior at the funeral home and thinking she was undignified but the worst part was months later, when I was out with her shopping or having lunch, and she cried. I hated that. I didn’t get it. He was dead a long time—months—and she was still crying.

How could I have been so insensitive? No, maybe it’s more like how could I have known at 18 what it means to lose your 56 year-old husband. After all I wasn’t exactly dealing with the loss very well. My father died in July and the following June I married a man that I met two weeks after my Dad died. Most people wouldn’t need a therapist to see what was happening. Sadly, it took me more than one therapist and an attorney and a civil annulment and one from the Catholic Church to undo all of the consequences of my denial and repression.

But it’s coming at me. Today even the Chick-Lit book I’m listening to in the car: “Certain Girls” by Jennifer Weiner—the book I picked to listen to while driving around town—the book I picked to give myself a break from death and illness and fear—this book has a dead husband. Even in my fun reading the widow thing is in my face? What would a therapist make of that?


I am reading the book review from yesterday’s New York Times. I sit to read about Anne Roiphe’s memoir, Epilogue. I feel the fear and sharp pain as I read the review. I wonder if there will be a class on the Literature of Widowhood in my future? I begin to list the works: Donald Hall, Anne Roiphe, C. S. Lewis, Joan Didion. I think of the poems. I can’t remember the poets but I can summon the sharp mixture of pain and fear.

Why am I reading these now? Some kind of inoculation? Or some kind of preparation? Or a way to stick myself, to test the hurting part of me, jabbing something sharp into the already sore place. Part of me is screaming: “I don’t want this, I don’t want this”, even as I know the odds are good that I will get this.

I think to myself, “stop being such a bitch about cancer and its politics, be nicer, be kinder”. I think I should do anything to make a deal with God that will spare me having to outlive the person that I love.

But I have outlived people I love. I have outlived my brothers and my sisters. I have outlived my parents. My greatest fear for so many years was that my husband would die but then I left him. Does that make any sense at all? And now, the man I am with has cancer. And I am loving him. And I am afraid. And I do not want the future to come.

Sunday, August 24, 2008

Who Wants to be a Cancer Survivor?

With all the hype for the upcoming “Stand Up to Cancer” TV celebrity special it seems everyone wants to get some cred for cancer. But it raises this question: What counts for cancer?

Really it used to be that a cancer survivor was the person who had CANCER. Big Time Cancer. They had it bad and then they had surgery that was horrid and disfiguring in some way: some body part was removed. Then they had chemo. Bad chemo; the kind that made you sick enough that you almost died. Not the kind that makes you feel like you want to die but really: you almost died.

Now, and yes it’s that breast-cancer-celebrity-womanist “I’m too pink for my bra” phenomenon: everybody it seems wants to have had cancer. I open Vogue magazine and Rolling Stone and a singer then a model then an up and coming actress are telling their “cancer story”. It can be stage four and both breasts removed or it can be a lumpectomy or maybe a needle aspiration or now maybe even a doctor’s appointment gets you cancer cred?

So mastectomy? lumpectomy? A call back on a questionable mammogram?
Before the September 5th I need to know where I stand. Does the melanoma lump removed from my leg count? It was done outpatient and my leg was numb for hours and I have a long scar on my inner thigh. When asked about it I always say “Knife fight with another girl”. Does dysplaysia of my cervix count? I was 28 and had a great gynecological oncologist at Johns Hopkins. He took a third of my cervix and took a lot of pictures that he told me would be in his next text book. That overnight surgery left me with what is graciously referred to as an “Incompetent Cervix”.

Will my scar and my incompetent cervix allow me to stand up to cancer? Or do I have to sit this one out?