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?

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?

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.

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.

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?

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.

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.

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?

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?

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.

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.

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?

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.

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.

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?

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.

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.

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.

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?

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.

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.

Mammogram

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.

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.

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.

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.

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.

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.

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?

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,
preface to TWO TRAINS RUNNING

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.’”

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?”
Or
Is it simply, “How are you?” and now he has to tell them about the cancer.

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.

FU

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.

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.

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.”

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?

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?

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.

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.

Anxiety

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.

Cancer.

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.

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.

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.

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”.

Recipe:

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.

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.

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.

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?

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.

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?

Widows

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.

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?

Brown Ribbons

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

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

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

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

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

Where are the brown ribbons?

Sick and Tired

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

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

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

Safety

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

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

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

Donald Hall and Jane Kenyon

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

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

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

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

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

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

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

Genuine Love

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

--M. Scott Peck, MD

His Wife Calls

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

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

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

The Other Side of Anger

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

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

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

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

Colon Chemo

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

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

Resentment

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

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

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

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

You Could Get Diabetes From Cancer

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

Babar and FU

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

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

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

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

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

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

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

Marrying Cancer

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

Far Down The Road

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

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

In Alcoholics Anonymous one of The Promises is this:

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

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

My Hip Hurts

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

Vacation Days

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

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

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

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

Josephine's Cross

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

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

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

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

The First Casserole

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

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

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

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

Fashion Tips for Caregivers at Chemo

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

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

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

In this powerless situation, style is a consolation.