Precious Time

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

Starry Starry Night

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

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

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

Caregivers

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

Love After Chemo

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

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

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

The agony of da feet

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

Bubbles

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

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

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

The Last Lecture

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

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

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

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

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

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

Long Talk About Love

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

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

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

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

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

Don't Go to the Hardware Store for Milk

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

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

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

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

Favorite Reminders

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

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

Heartbreak after Obama

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

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

Out at Work

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

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

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.