The Scarlet Letter

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

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

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

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

The Mercy Papers

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

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

Lance in France

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

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

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

Anger and Ice

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

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

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

Worrying

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

What Have You Changed Your Mind About?

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

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

“What have you changed your mind about?”

and its corollary:

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

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

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

Coaches for Cancer

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

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

What if You Die of Cancer?

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

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

Fighting With a Friend

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

Inaguration Day

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

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

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

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

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

Maxine has a Tumor

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

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

Now Maxine has a tumor.

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

Churches are Closing

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

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

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

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

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

Anniversary

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

Waiting for Guidance

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

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

Mermaid Wisdom

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

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

Funny Movie

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

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

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

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

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

Coughing

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

He is coughing.

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

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

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

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

I need to go watch a funny movie now.

Memento Mori

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

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

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

Mmmmmm.

Dance Every Day

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


--Friedrich Nietzsche

More than Just Talking

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

Talking About Sex

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

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

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

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

Thanks Oprah!

Side By Side Effects

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

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

Can I see Clearly now?

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

--from my journal June 5 1994

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

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

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

Lost and Found

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

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

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

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

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

Love as a Found Object

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

A New Year...Now back to work

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

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

If Nothing Changes

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

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

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

God help me.

Restore me to sanity.