Thursday, July 31, 2008

Losing It

Today in bed the physical intimacy cracks me open. Giving pleasure, daring to go further, observing his pleasure and then I lose it. I am crying. Cracked open. How long can we have this? All of the pain f flows through me: for him, for myself and for the others affected by this relationship.

I look at his face. I look at his too-bushy eyebrows and I think, “they look so normal, not so wild.” Until I realize what I am seeing and what it means: He is losing his hair.

Tuesday, July 29, 2008


And those who had seen it told how he who had
been possessed with demons was healed.

--Luke 8.36


Money is even harder to talk about than sex. We have gotten pretty good at talking about sex so maybe this is the next intimacy. We talked about life insurance again. I have worried about what will happen later. What will happen to me after a year of more of intensive caregiving? Will I be able to work? Need to take a leave? Work part-time? I talk to my therapist and to friends. “You need your work”, they say and I understand. I need it to stay me and to have my identity intact in the midst of caregiving and later too. “Later” of course is the euphemism. What is not so obvious is that while I can get up and shower and put on professional attire and even accessorize well (that comes naturally), and I can even show up at my desk, in meetings and even give presentations, my brain will not all be there and so little of my heart. It is, and will be, “Act As If” time.

But I do worry about the later. I will need to be able to fall apart. I want to know I can pay the rent even as I am sitting like a vegetable stunned by grief. I know that place.

In bed he asks me again about money. He says an amount. “This is what I’d like to do so that you have some money, just in case I croak”. For a few seconds I enter that place of being alive when he is not. For a few seconds I am here in this apartment and he is gone and never coming back. For a few seconds I am alone in this bed and the pain goes through my body. I believe in God; I do not think there are any accidents in life; I have surrendered him and this relationship again and again over these past few years. I do want that blessed assurance. And life insurance too.

Monday, July 28, 2008

On Days Like This

On days like this I forget. We are busy, sexy, laughing, walking, eating oysters, and semolina cake with sweet basil sauce. We walk a museum for hours and we visit a new library and sit to read. We sing in the car and we catch some of the Yankees game at night. He says, “Next summer we should go to…” and I say “Yes, let’s make plans to…”. And then I remember.

Sunday, July 27, 2008

Happy Birthday to Me

Today is my birthday. It was one of the best, but there was a faint shadow over my heart this day. We went out for breakfast, then home to read the New York Times. I opened a bag of gifts that were perfect and perfectly selected. Each with a note that accentuated the thoughtfulness. There were my favorite sweets, movie tickets, a book that was dead-on perfect for my recent thinking about culture and ideas, and a most amazing necklace. Not easy to pick a piece of jewelry for a woman who cares about clothes and accessories the way that I do—but he did it. There was also the gift of tickets to a play in New York in October.

The shadow began there. October. Chemo continues through November. Side effects are cumulative. Fatigue is cumulative. Immune system has to be protected. He is fine now, he is great now. The other gift of this morning was amazing “living room” sex. I think of it that way because it is the kind of sex we fall into sometimes unexpectedly. It is sex that begins in the living room-- and ends there hours later -- we never make it to the bedroom. It is hot and hard and satisfying and sometimes shocking. And today, July 27, it’s still on the menu. That’s a birthday gift for sure.

But it’s July and the play is in October. Will we be able to go to New York City in October? Will he still have that kind of energy in October? That kind of desire? Will we have sex in the living room? In the bedroom? In October?

Saturday, July 26, 2008

Poor Cancer

What happens to poor people who have cancer? What happens if you live in the South End of Albany or in The low rise projects in Baltimore? What if you don’t have access to the Internet (No, the library does not help. Get over that.) and you can’t take two buses to get to the Gilda’s Club to relax in the coordinated Waverly print Comfort Room? What if your front stoop is the crying room and the drug dealer on the corner is part of your care team?

Friday, July 25, 2008

Lessons from Drumming

Lessons from Drumming

Years ago I studied African Dance. One of the joys of that kind of dance is that it’s always performed—even in regular classes--with live drumming. The music is not separate from the dance and the drummers are not separate from the dancers. In 1994 I was in a summer dance workshop at Omega Institute. The teacher explained the relationship between dancer and drummer. I wrote these lessons on a card and I found that card this week. It applies now more than ever:

1. Listen for the beat under the beat.
2. Listen for the break; listen for the signs and signals that tell you to change or to stop what you are doing.

Thursday, July 24, 2008

Operating Instructions

In her book, Operating Instructions, Anne Lamott tells a story about going to buy a dress for a date. She is with her friend Pammy who is dying of cancer. Pammy is in her wheelchair outside the dressing room when Anne comes out to show the dress she is trying on. Anne scrutinizes herself in front of the mirror with Pammy watching. “Does this make my hips look big?” Anne asks her friend. Pammy looks at Anne and says, “You really don’t have that kind of time.”

That is what I have been feeling this week. I see myself fall into the habits I have of jealousy or fear. All the worries I have nurtured so well all of my life: “I will be left” “I am not enough”, “What if he doesn’t like me?” I create scenarios to play out these fears. I’m a playwright in that way. I set the stage, do the scenery and even costumes. I write all the dialog for all the parts. But these week I hear these words, “You really don’t have time for this. Just love him.”

Wednesday, July 23, 2008


On the 6th Floor at St Peters Hospital the patients are recovering from surgery. They come back to their rooms and they moan. They have had their abdomens opened or had many incisions and colons sliced and reconnected. They are bloated and miserable.
They are also learning: You learn that you can live without some of your colon. You learn that you never want to eat again. The men learn what it’s like to feel pregnant, to have constant heartburn and bloating and that everyone—every single person--wants to know if you have passed gas and if you have had a bowel movement today.

Oh the indignities.
But then they say you must ambulate. The solution and the only solution to the pain, misery, bloat is to ambulate. They get around to saying “you need to walk” but on the board near your bed it says “Today’s Goal: Ambulate”.

The patients are gowned and draped in smocks with small prints, tired at neck and back, all looking very patient-like, no individual identity they go out to the halls to ambulate. They are attached to IV poles, they are wired and tethered and they cling to the IV pole like Moses holding his staff. They ambulate to the end of the corridor, they ambulate to the elevators, and staff ignores them, walks around them and moves to one side. The patients see each other and nod or smile. In the beginning there is little small talk. The patients with family visiting each have a walker—a family member or friend who walks with them. It’s like having one of those ponies that accompany the thoroughbreds onto the race track. Each patient has a companion (stable pony) walking beside them. Perhaps this is their pacer horse: The one who keeps the thoroughbred/patient calm, who is a quiet presence.

Most of the patients don’t have the strength to walk and talk, they feel so miserable, full of gas, bloated, pain at belly and chest, but the company of one who walks beside them matters. There is another person there, another presence. Part of this role is to be the one who says, “Come on and walk.”

Walk at least five minutes each hour, take up your bed and walk, walk to solve your problems, walk off your troubles, walk your pain away. Walk and it’s a new day; walk and pass that gas.

Tuesday, July 22, 2008

Living Around the Edges

How do I make a life around the edges of his cancer? I know the theory and I know the good advice of support groups and advisors. I am not supposed to make my life around him. I am supposed to make my own life and live my own life, and while I can go through the motions of doing that no one admits how hard it is to do that from the inside. I am always in the wrong place. If I am out I wonder if I should be home and when I am home I am resentful that I am missing my own life. This is compounded by thinking that with Stage Three cancer he might really be dying so what kind of life will I have at the end of his cancer?

I think of the movie Ghost: What we regret is not loving. So I think to myself, “love more, love him now. He is here and this is today’s reality so love him now.” Nice idea, nice inspirational topic. But what doe sit mean in practical terms?

Do I go to work and keep my job/career/work going and going well because I will need that later. I will have to support myself later and I may have to support us now if cancer gets as expensive as it’s reputed to be. We are not married so how does that play out financially? Do I support him? Do we merge our finances even though legally he has a wife? And his wife is the person who will receive his life insurance. I will bankrupt myself to care for him but his wife will get the life insurance if he dies. And then I feel all of the shame that flows onto me for even thinking that thought. How horrible am I that I think of money and finances and the need to take care of myself.

But he is not taking care of me and this hurts. That is about more than cancer. And then I have this resentment that he has protected the wife that he says did not fulfill him but will not protect me; the woman he says brought him to life. What do I do with that? I can hear my friends saying, “Protect yourself, take care of yourself”.

What is emotionally healthy behavior in caregiving? What do you regret later: not taking care of yourself? Or not spending more time to take care of the other person? It’s a no win situation and filled with fraught pain no matter which way I turn. I am shamed into silence because I care about my own well being and I am hurt that he is not taking care of me.

Monday, July 21, 2008

Rainer Maria Rilke

Let everything happen to you
Beauty and terror
Just keep going
No feeling is final.

~Rainer Maria Rilke

Sunday, July 20, 2008

The Amy Winehouse House

A couple of weeks ago we visited Gilda’s Club to see what services or support might be available. The house is lovely and there are many activities, support groups etc. But about 30 minutes into the orientation I picked up the whiff of overriding condescension that accrues around cancer. Part of it is the pastel and pretty approach to surroundings but it’s also apparent in the tone of voice that is used by staff. It’s a cross between the voice you use when talking to a small child and the voice one uses talking to someone with Down’s syndrome or to someone in the midst of a psychotic break. The other hint at condescension is the two-handed handshake: the staff member takes both of your hands in theirs. This is accompanied by the long, deep gaze which immediately feels like someone told them how important it is to make eye contact and that “people with cancer need to be seen.” Well, they are going to make dam sure you know you are seen.

But the greatest tip off to the fact that once you have cancer you’ll never be treated like a competent adult again is revealed in the list of activities offered. At Gilda’s Club, the counselor told me--with that kindergarten teacher lilt in her voice, “We get together on Thursdays and make smoothies.” Smoothies. As I told John on the way home, “I have never made a smoothie in my life so why would I make smoothies in someone else’s kitchen with a group of strangers just because you have cancer?”

That smoothie was the turning point for me and it set me to thinking about the kind of cancer support place I’d like to create. Hence the birth of The Amy Winehouse House. So here are some of the things that we at the Amy Winehouse House offer:

The mission of The Amy Winehouse House is: Fuck Cancer
Our motto: Get a Life.

We believe that cancer and its treatment is fierce and so everything around it should meet that fierceness head on and not back down into pastel prettiness. We don’t coddle and we don’t play word games. We don’t parse “living with” versus “dying from” cancer.

At the Amy Winehouse House we are not nice and not pastel. We don’t believe that having cancer makes you nice or pastel either. If you were an ass before you got cancer now you are an ass with cancer. We don’t ask you to share, process, make crafts or drink smoothies. We offer no bookmarks or anything that has or requires a crocheted cover.

All activities at the Amy Winehouse House are optional and include:
Making martinis
Strip poker night
Learning how to hot wire a car
Our book group is currently reading “Snuff” by Chuck Palahniuk
We have a smoking room
(If you have cancer and are going to die we want you to enjoy a cigarette on us.)
On Saturday nights we have strippers. Yes for girls too.
And we certainly do have drug education. We think of this as self-chemo. Our role model, Amy Winehouse, is an expert on self-chemo. Our self-chemo classes explain how to smoke crack and how to play the cancer card to get some medical marijuana.
Our movie night includes pornography.
(After all cancer is pornographic so why get all puppyish and pastel about something that is violent and intrusive.)

In future entries I’ll explain the Board of Directors and our policy for volunteers. (We don’t have tee shirts but you do have to wear eyeliner.) We’ll also talk about why we hate Lance Armstrong (We call him “One Ball” around the House.) We have bracelets too, but ours say, “Fuck Cancer.”


"And those who had seen it told how he who had
been possessed with demons was healed."

--Luke 8:36

Friday, July 18, 2008

Telling off the Girl Friends and Finding out this is Grief

Yesterday I was miserable with pain: angry, pissy, complaining to my friends. Work feels impossible and wherever I am I am in the wrong place. If I’m at work I want to be home with John. If I am home I think I should be at work managing the small organization where I am the director. When I watch TV with John I think I should be writing, when I am writing I think I should go see a friend or do errands or make a nice meal for him. I can’t do it all and I am frustrated. But last night I also learned—even as I got really angry at my friends—that I am also grieving. John was diagnosed six weeks after we moved in together. WE didn’t get a honeymoon or a chance to fight over the TV remote or where his clothes go in my apartment.

Here is the email I sent to my friends late last night:

Be my friend and listen to my pain. Hear me. See me. Support me. Stop trying to fix me stop trying to make my pain stop. My pain is real and authentic and devastating. Let me be a bitch. Let me howl. Let me say how horrible and awful this is without trying to hurry and make it go away.

I am grieving. I am grieving the loss of the man I left my marriage for and I am grieving the loss of the relationship I thought I was entering in February. In April that man and that relationship disappeared. It shifted dramatically. I am still with John and still in a caring relationship but it bears little resemblance to the love I was looking at in February and the relationship I thought I was entering.

Yes all relationships change and yes all people turn out to be different but that doesn’t mean I have to give up the grief.

You of all people should understand grief and have the moral courage to let someone be in their grief with out platitudes and without trying to fix.

I’m a manager. Being told to delegate is crazy. If there was a puppy left at my office he’d be typing right now…I don’t need ice cream or management advice at least not from my friends. I need to have my grief be validated. I need to have my friends say "Yes, You really got a raw deal and this is exactly as horrid as you think it is". I need my friends to say, "no wonder your heart is breaking. It’s because your heart is being smashed to tiny pieces every day and we get that, no wonder you have anxiety and fear and panic and sadness".

I need my friends to remind me that. I can go deeply into the pain not run from it, not cover it up in ice cream and new shoes and martinis and distractions. I need my friends to remind me that I have strength and my deepest hope is that my friends have the strength to witness this without trying to fix it. There is no fix. Only grief and howling terribly as long as the pain lasts.

I have been awake all night. Mad at you but that led me to walking and howling at the moon—for real. I am so lonely. Not for chatting or pep talks but deeply lonely because the man that I love cannot see me and he cannot see the loss of the relationship because he has to believe he doesn’t have cancer and he has to believe that he is not dying so now the very person I most want to share my pain and grief with has the dilemma of his very psychic survival preventing him from being able to help me. I talked to John last night about some of this but finally realized he needs to NOT believe he is ill or dying. He needs to be positive and treat this like a problem to be solved. He needs that mind set for himself but that of course leaves me out and sadly lonely.

I need my friends to get that. Not fix it, not absolve it, not give me suggestions but to really get the depth of this pain.


My heart is breaking.

Wednesday, July 16, 2008

Tony Snow Died

We were on vacation and sitting Sunday morning reading the papers. “Oh, Tony Snow died” someone said. There was something in her voice that caught me. I didn’t remember who Tony Snow was but I knew that later I needed to read that obit. The Times obituary page showed Tony Snow’s death announcement right next to that of Bobby Mercer.

Once again, I knew something. I have these “ideas” premonitions maybe, sometimes it just comes to me as a knowing. My grandmother Josephine was psychic, had “the gift”. She was born with a “veil”…part of the afterbirth covering her face. They say, that is a sign of having psychic abilities. I always wanted to have her gift, but now I’m not so sure. I do know things, often painful things before there is any reason for me to know.

I read the Tony Snow obit and scanning the paragraph I felt cold and ill. Snow was 53 and had colon cancer. It was diagnosed in 2005, he had surgery, then it came back in 2007 and in April of this year surgery again, death in July. Time from diagnosis: Three years. I do the math over and over. I count on my fingers. Three years. He was young, only 53. He did all the same things John is doing: removal of colon, chemo. Even the chemo sounds the same. The obit mentions that Snow had not lost his hair but it had thinned during chemo. That’s a sign of the 5-FU chemo.

I keep counting 2005 to July 2008. Three years. And Snow had the same, “I’m not dying, I’m living” attitude. I look at the dates and do the math again. Three years. I feel the panic in me. Just the night before John had said to me that he was picturing us 20 years from now. I don’t have that picture. I’m counting months.

When I was growing up women in the neighborhood always counted backwards when someone had a baby. I saw them count on their fingers. It took me years to understand what they were doing. Nine months backwards form baby birth to wedding. When was this baby begun? I count backwards now to John’s diagnosis in April 2008. Will we get three years? Five? Two? The panic is pounding in me and I don’t know how to talk to him about Tony Snow dying.

Friday, July 11, 2008

It's Always Something

People have said to me. “Well you have a fairly new relationship and now you are dealing with cancer too. How do you know where the relationship is and how it relay is?”
I realized that after a certain age any time you enter a relationship you are also getting a prize in that Cracker Jack box. It might be step children, bad credit, chronic illness, job dissatisfaction. It might be a crazy former spouse or it might be cancer. It’s always something.

It’s not about separating the relationship from the things that come with it. Rather it is about seeing those things as factors you deal with or talk about or maneuver around in the relationship. There is not the relationship and then also cancer. It is folded together. Dealing with all of it is dealing with all of it.

We don’t know who discovered water but it certainly wasn’t the fish.

Thursday, July 10, 2008

Sex, Yes, Sex

OK, last night was one day after Chemo and we were watching a movie. Just playing around and he put his hand on my breast and that—just like in the old days (meaning before cancer) --that slight touch of breast was all it took. The shirts came off then the bra and then the shorts and then we were on the living room floor. When he kissed me I tasted it. As the touching and tasting progressed I could feel my lips tingling? Was this chemo or my own erotic response? I keep wondering if I am getting his chemo through kissing, tasting, touching. I keep remembering that we teach—or used to teach --teenagers that coitus interruptus really didn’t prevent pregnancy because there could be some ambitious little sperms in the pre-ejaculate fluid that is present during arousal. So too in adults? So too with Chemo? Any tiny bits of chemo agents in that pre-ejaculate fluid? Enough to make a difference?

But there is a better part to this. We felt like lovers. Here is a very tired man, a man with cancer and we are breathing hard and feeling hard and aroused and hungry. So hungry for each other. That in itself has to be life giving and life supporting. How could they not talk about sex? How could the American Cancer Society leave out real talk about sex? This is way better than a workshop on lipstick and wigs. This is way better than anything about nutrition. This is the real food for the soul when you have cancer. This is sex to save your life. Forget pink ribbons and relay for life. Get laid to save your life. Sex cures cancer. Well, at least it gives you life in the midst of it.

Dance in Your Blood

Dance in Your Blood


Dance, when youre broken open.
Dance, if you've torn the bandage off.
Dance in the middle of the fighting.
Dance in your blood.
Dance, when you're perfectly free.

Translated by Coleman Barks

Wednesday, July 9, 2008

Gilda's Club and AA

I was leaving the Gilda’s Club orientation and I was cranky, annoyed and feeling unfit. I went to get some sense about taking care of the man I love who has cancer. But I left feeling like an unfit caregiver. Kind of like an unfit mother. I’m supposed to be able to do this. But I feel selfish and mean and I did not like the good cancer support people. I further resent that in my not liking of them I will, of course, be categorized by them as grieving. “Oh yes you’re angry but that’s OK anger is a stage of grieving.” I wanted to ask, “Is hurting you also one of the stages of grieving?”

It’s the cancer Catch 22..any criticism gets reduced to a symptom. It’s kind of like cancer actually. Someone is a total prick about what they eat or like or feel like and it’s all symptom-otology.As I was leaving Gilda’s I thought this will not work for me. I want a place where I can let it rip, where I can really be myself, where I can talk about cancer And caregiving but also about my work and my own health and my relationship and sex and All Of It. I want to be able to swear and I want to hear the full mix of other people’s stories and lives too.

And then I realized that what I had just wished for was AA. I already had a 20 year membership in the best, most flexible and most comprehensive support group out there. I’m a member of AA and I have a place to go where I can talk about him and me and them and it. I can have all my feelings and I can be a part of other’s stories as well. I have it all. I have it in AA.

The OMG People

The things people will say to someone who has cancer. “You look good”. They say this to him because they heard that he has cancer and they were expecting him to look like crap. It always makes me wonder if later they are going to say, "You look like hell”.

Or they begin to tell you a story about someone else who had cancer and halfway into the story you can tell that they suddenly realized that the story they are telling does NOT have a happy ending-- and it turns out that the neighbor, coworker or uncle died of cancer and probably the same kind of cancer that your loved one has and you can see the look on their face—even as words are coming out of their mouth—and they are trying to get out of the story they are telling to you. They desperately want to redirect themselves so they can make this story about something else but you can see that what they began with—some hope of consolation, “he has the same thing.” Or “His chemo wasn’t so bad” is in fact a story that ends with “and then he died.”

That is one version of the OMG (Oh My God) people. Goes like this: “Oh my God, cancer. I’m so sorry and I’ll pray for you. What does that do? Pray that his illness goes away and some other sucker with no praying friends gets to keep theirs? Or the OMG you’ll have such a hard time as a caregiver, or the OMG he’s gonna be really, really sick you know but you can do it. They give you that big attta girl after they devastate you with their sympathy and alarm.

People will tell you all kinds of “How it’s gonna be” stories and then you find out that their sister had breast cancer or their boss had lung cancer or lymphoma or some other kind of cancer and some other kind of chemo. But, my God, the truth is that until this began I thought cancer was cancer and that chemo was chemo. I have learned so much so fast. What a school this is and man, the tuition is a bitch.

Love in the Time of Cancer

We were friends and then lovers. We began a new life. I’m Max and he is John. Well, not really, but soon you’ll see why we want to keep a modicum of privacy.

We met years ago and we drank a lot of coffee, talked about books and sports, favorite restaurants and movies we loved. The conversations became more personal. We fell in love and became lovers. We left our marriages and moved in together. We began to become a couple in simple and complicated ways. We bought a bed and dishes, opened a joint checking account, went grocery shopping and took a vacation together. We took tiny, careful steps to meet each others family and friends.

One day he asked me to drive him for a routine colonoscopy. I had done that for many friends. No big deal. I dropped him off and came back hours later. We sat in the small curtained cubicle waiting for the doctor to sign him out. I asked did he want me to wait in the lobby, trying to be discreet, allowing him this privacy for a conversation about body parts. “No”, he said, “He’s just going to tell me that I have polyps and then we’ll go have lunch.” I remember those words because of course, that is not what the doctor said. Instead when he looked at the chart and then at me and then John, he said, “You have a problem.”

The problem was cancer. Stage three colon cancer and instead of lunches and vacations there was surgery and doctors offices and learning about chemo. I am lover and caregiver and chauffer, 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.