We Are Easter People

I have an Easter memory from years ago. I was living in Washington, DC, and that year was a low point in my life. My older sister had recently died and both of my brothers were seriously ill; my best friend was leaving town, and on top of that I was questioning my work.

In my journal that April I wrote, “Am I depressed?” When I read those pages now I laugh and shake my head. “Depressed?” That I even had to ask. In that long year I thought I’d never laugh again, just as I thought I’d never again feel love, the joy of easy friendship, or the satisfaction of good work.

I went to church that Easter out of both habit and desperation. I had grown up in a church going family. It was what we did. And so to honor the family that I was losing I went. I chose a big downtown church for Easter services—one with hundreds in the congregation--not daring to visit a smaller church where I might have to speak to people or be embarrassed by my own tears. I wanted the paradoxical safety and anonymity of being in a crowd.

The minister that Easter Sunday said many things that I don’t remember but one sentence has stayed with me all these years. He said, “We live in a Good Friday world…” That I understood. A Good Friday world is a world full of suffering, questioning, unfairness, trouble, mistakes, hurts, losses and grief. That was certainly confirmation of my life that day. “But”, he continued, “We are Easter people.” Those words stopped me cold. I was stunned to be reminded that painful morning that there was something other than what I was feeling.

My life was not instantly transformed; his words did not change the course of my brothers’ illness; nor give me answers to my questions. But the idea of being “Easter people” gave me a pause in my grief and the teeniest hope that there really did exist something other than pain.

Today all of the things that hurt so much back then have changed. As my brothers died friends came forward to help. I began to write and publish. Months later I fell in love and moved to upstate New York where a new life began with new friends, new work and yes, of course, new problems.

What strikes me now is that this believing in “Easter” in the midst of “Good Friday” is as much about being an American as it is about being Christian. Americans are, by character, a people of reinvention. There is an extra layer of intention that we bring to “new life” that isn’t true even in other predominately Christian cultures. As Americans we are future oriented, we look forward not back, and we are, for the most part, a culture of optimistic, hopeful people.

The gift from that Easter service many years ago was the reminder that we are, by religion or culture, a people who believe in possibility. When our hearts are shattered we are sometimes shocked to discover that there is joy as well as pain inside. Out of the ashes of our mistakes, from our defeats and even our despair, we rise again in better lives.

His Mother Asks

Visiting John’s mother last week and while he was in the kitchen making coffee his mother turned to me and said, “Do you love him?”

We’ve been together a couple of years and I have known her for more than a year. She’s seen us together in many settings and has, I know, talked to him about me. Then this question, “Do you love him?”

It is a mother asking, “Do you love my boy?” and “Are you going to be good for him?” and “Will you take care of him?”

It was also, and I heard this, a mother saying, “Don’t hurt my boy.”

Thinking about Death

I kill John over and over. Even before he had cancer, and especially now that he does, I imagine his death. I am imagining him being taken away from me. I am imagining losing him. To be fair, I have always done this—imagined that people I love will die. It’s not without grounds; all of my family has died and I watched each one go, some fast, some slow. Now, having this long fought for love, there is a special cruelty in his cancer. There are real grounds for my fear. But I also know that I can lose what is here and what is now by constantly living in his dying.

On our vacation to Florida I read the book, “Beginner’s Greek” by James Collins and in it I discovered this line that I cherish as a new mantra:

“For the sake of goodness and love, man shall grant death no dominion over his thoughts.”

It is from “The Magic Mountain”, by Thomas Mann.

The Past Creates Today's fear

Yesterday in therapy I talked about this fear I have of somehow being tricked in this relationship. I know my fears of abandonment and the long standing sense of defectiveness that have been part of me for so long, but as we talked I kept coming up with this word “tricked”. It didn’t quite fit until I began to talk about how my mother could change on a dime, how her addiction to Dexedrine made her into two people: the 9 to 9 “perfect mother”…and then the Medea-ish monster that slowly appeared after 9pm as the Dexedrine wore off. Medea is the right persona. Like her, my mother was so angry at my father that she would hurt her children out of her own grief and fury. What I now understand is that as a kid it felt like a trick—someone had tricked me—I had a good, super-engaged and active, manic mother part of the day and at night the monster appeared and my better mother was gone.

The lasting piece is that I have come to not just expect but to anticipate and even strategize to deal with the other. I do this with John too. Sure he says he loves me, yes he wants to marry me, yes all the words and behaviors are there, but that younger part of me knows—she is just sure that she knows—he will trick me. One day I’ll come home to an ice cold man or one day he will just not come home.

It is not lost on me that this is also what his wife did experience. The loss of her seemingly perfect husband and seemingly perfect marriage must seem like the cruelest, most senseless trick. In my struggle to free myself from my old beliefs I also pray for her as she lives thru this reality.

Chop Wood Carry Water

There is an old Zen saying:

Before enlightenment: Chop wood, carry water.
After enlightenment: Chop wood, carry water.

It applies to cancer too:

Before cancer: Chop wood, carry water, buy groceries, pay bills, make love.
After cancer: Chop wood, carry water, buy groceries, pay bills, make love.

Before and after cancer there are bills to pay and water on the sink, socks in the dryer, deadlines, aches, pains, worries, bad TV, great movies, Facebook, missed birthdays, cranky coworkers, amazing friends, too much candy, not enough water, and a poem every day.

Projection

Today a lesson in projection.
I seem to have to learn this over and over but here it is again.
Yesterday I was ambivalent; I kept a secret; I was dishonest.
Last evening I was certain that he was ambivalent; he seemed evasive and I wondered, “Is he really telling me the truth?”
That of course raddled me. I was sure he was pulling away, his commitments uncertain and feelings unclear.
Then I felt needy and insecure, could not be comforted.
So I began to pull away.
Today as I dissected it I saw that it all began with my behavior.
I took my discomfort with my own actions and I
projected it all onto him.
Then watching that movie I distressed myself further.
Note to me: I made myself miserable. Don’t do this again.

Return from Vacation

Home from vacation. Sunshine. Wearing white. Wearing pastel. Wearing sleeveless shirts and colorful rubber flip flops. Each day I texted my beach report to my pal, Leslie, a fellow mermaid. The ocean changes color daily and has different moods as well. As mer-gals we treasure this variation.

The trip was good. A visit with John’s mother and sister. Fabulous food. Feeling free to be affectionate in front of family. Waking to the sound of mourning doves and bird song. Our own birdsong at morning.

Home now to rain and cooler weather. A day alone for laundry, library, dry cleaner and drugstore. A few groceries for our own meals again.

While we were away a friend died. He had been diagnosed with lung cancer a year ago and made it this far. Two weeks ago at John’s oncology check up we ran into Tony picking up his medications from his oncologist. I introduced the two men and we laughed about cancer. Tony’s memorial is today at five.

Body and Brain

I’m reading a wonderful book called, “Proust Was A Neuroscientist” by Jonah Leher. He’s describing how artists—in different fields—anticipated and sometimes better explored what we have come to know now from neuroscience.

He writes about what Walt Whitman “discovered”—that our bodies have or are our brains—feelings generated by the body not just the brain, “the mind is embodied.” What came to be though of as Whitman’s bawdiness was in fact his discovery and delight that our body thinks and our minds feel.

Whitman’s discovery and celebration was so important because it followed years of Descartian thinking—really thinking. Descartes had divided being into two distinct substances: a holy soul and a mortal carcass. The soul or mind was reason and thinking, the body just carried that soul around. Descartes thinking led then—here’s where it gets weird—to Phrenology—studying the skull. The worship of the brain became study of the bone around it. It’s amazing now to realize how much medical attention, study, research and, yes, medical treatment was based on phrenology.

Yes, we laugh and roll our eyes. But wait. We think that study of the skull makes no sense but someday we’ll look back and have the same embarrassed look when we think about PET scans and CAT scans, “Look, they thought the physical structure of the brain was evidence and prescriptive..how odd and dumb they (we) were.”

Mind and body, brain and soul. Back and forth we go, trying to understand these beings that we are. Spiritual beings trying to live human lives. Human beings carrying around and caring for our souls.

Tomorrow I’m taking brain and body, mind and soul on vacation. I need rest for them all. And John too. Off we go to Florida, sunlight and the dearest god of respite I know: the ocean and the beach.

We’ll be back in seven days.

This story of love in the time of cancer will continue then.

My Colonoscopy

Two months ago at my annual physical my doctor asked again if I remembered my last colonoscopy. I’ve been stalling her for years but this time she didn’t play. “Since we’re not sure”, she said, “we’ll get you in for a screening colonoscopy now and go from there.” I left her office with the referral, and that afternoon the gastroenterology practice called to schedule the visit.

I called them back twice in January and also in February to change the date. On the last call the receptionist said, “This is for a work related problem?” And I knew that people probably change this appointment all the time and I wasn’t going to get to change it again. So I made the date.

The appointment after all wasn’t for the colonoscopy but just for the visit where they do a pretend physical (all your clothes are on) and sign you up for the big day.

I went last week and the PA who saw me was very nice. I explained that I had been to their office before—This was the scene of the crime in our love and cancer life—the very same office where I accompanied John a year ago for his routine colonoscopy which became: surgeon, CAT scan, cancer, surgery, hospital, ambulating, pain, gas, agony, chemo, hair loss, blood tests, neuropathy, scars, fatigue, fear, 5-FU, home infusion, visiting nurses, crazy schedules, waiting rooms, tears, casseroles, vitamins, walking, Babar on the couch wearing a chemo pump to match John’s, and more love and sex than either of us would have ever predicted. I swear that last part is what got him through this year and I know that is what helped me survive as well.

So when the Gastro-PA asked me if I had a doctor that I preferred I said, “Doctor Samuels”, the man who did John’s colonoscopy. I decided to not be superstitious, and I am comforted in a small way when I recall how he managed his facial expressions as he met us in the curtained room and began with a small smile and the words, “”Well, we have a problem.”

So my colonoscopy is scheduled for May. I was able to buy them off that much time. But it is time. If my routine visit becomes something resembling John’s I don’t know what I’ll do. Having seen colon cancer and its treatment up close I can’t say I’d go through it. Save the lectures and the platitudes. Let’s just hope I don’t have to argue with you in May.

My New York City Day

I spent yesterday in New York City. The beautiful train ride, an orgy of magazine reading, a quiet well-behaved seat mate, all made the start of my day good. I splurged on a taxi to SoHo, visited the Varda Store—a shrine to timeless Italian design (one pair for summer); Kate’s Paperie—a sensual and textural wonder of paper (two packages of envelopes) and then another taxi to The Frick—one of the most elegant and wonderful small museums. The fountain room is so soothing, and I always do this kind of double take looking at some of the pieces on display: “Oh my God, that’s a real El Greco.”
In that small brownstone are works of art that are ubiquitous as images in Art History 101 so I have to remind myself that even though I have “seen” it a million times that this—this one at the Frick—is the Real Thing.

The downsides to this day? The worst is running the perfume gauntlet at Saks. The terror of the aggressive perfume sample ladies and their counterparts at cosmetic counters. It is fearful even to make eye contact with anyone of the first floor at Saks. A mere acknowledgement can result is being dragged to the counter and being re-made—even while you are sputtering, “Oh, no thanks, just shopping.”

The other is the “bourgeois-garde” of the folks who work in museums. In their desperate feeling attempt to declare their avant-garde status they all look the same: same black plastic eye-glasses, same eye brow shaping (male and female), same MOMA watch, same black clothes now—because “Color is Back” (says Barneys)—worn ironically. I want to whisper, “You look the same; you have lost the unique aesthetic you are attempting to convince us that you have.” These days someone who works in a museum and wears a pastel twin set and real pearls will be the iconoclast.

The other challenge of my city day was to remind myself that I can have a life—and an aesthetic—with or without John. It feels important these days to find ways to remember that. To reclaim a self and a separateness. Just in case we stay together and just in case we come apart.

Imus Cancer Sex

Radio personality Don Imus is diagnosed with prostate cancer. In the newspaper story covering Imus announcement it says, “He noted that doctors seemed reluctant to talk about one of his biggest worries: What the treatment will mean for his sex life.”

No they are not talking about cancer’s impact on one’s sex life because it is taboo. It is a crazy factor across the board in Cancerland that there is no frank discussion about sex and sexuality. Yes there are the euphemistic pamphlets, lots of mentions of intimacy and the dreaded “cuddling” and even advice to “talk to your partner.” But if your doctor and medical team will not talk frankly to you about sex what the heck will that conversation with your partner include? “Was that cuddle good for you?”

In many ways Cancerland is stuck in the 1950’s. I remember the similar pamphlets called “You’re a Young Lady Now” and “Growing Up and Liking It.” One was pink and one was lavender. They were ostensibly about menstruation and sexuality but no body parts were ever shown or discussed. The closest they came was a line drawing of flowery fallopian tubes that looked like exotic plants with tendrils. But they never showed you where these were in the body or God forbid show any relationship to the vagina or the outside world.

Fifty years later when you get colon or breast or prostate cancer you are given more flaccid, pastel booklets advising talking, intimacy and cuddling. Even the feistiest advocates want to talk about empowerment and baldness but never orgasms or fellatio.

The implication is that once you enter Cancerland you won’t care about or like sex anymore. But that’s so backward. When you have cancer life becomes even more precious and sex is nature’s way of screaming at the top of her lungs, “I want to live.”

This is why I started this blog. Someone has to talk about love and sex in the time of cancer. Step up folks and look your doctor in the eye, give the pamphlet back and ask the patient advocate to stop blushing and fumbling. The next time you are at chemo say very loudly, “Is anyone here having sex?”

Bracketology

Well, I have learned more about basketball in one year than I learned as the captain of my Junior High team. (Those were girl’s rules of course and we wore “pinnies” not uniforms.) A year ago I didn’t know what a bracket was and tonight I watched the assignment show waiting to see where Pitt and Siena land. Tomorrow I’ll do my own bracket and place some serious and sexy bets against John’s picks. With these kinds of bets it’s as much fun to win as it is to lose.

Pi Day

Let the circle be unbroken. It’s Pi Day. The day that we celebrate the word’s most widely known mathematical constant. Let them eat pie. But no. Today after going round and round and round with John on “Where are we going?” and the usual fight about ratios in this relationship, I am dizzy and wound down. Forget the pie. I’m eating a pint of ice cream!

Friday the 13th

Sunshine. Cold. Hints of Spring about to come or soon to come. Vacation soon and that means more sunshine, beach, family—his. A reminder of my family long gone. How strange it is to have no family and to borrow someone else’s. It feels like that. A bit of a dance. We are not kids. His mother is not my in-law though we have more in common than sisters it turns out. There is one of the funny things about being older.

Work is hard now. Recession real. Always the hint of a phone call or lab report that could derail us at any moment. Lately I have worried about my health not his. That’s a first and maybe having seen up close-- once again --what illness can do I don’t want to go back there?

I’m glad it’s Friday. March is a tease. Never the right coat. Come weekend come.

Breasts

Straight men really like them. Gay men too, probably, having been mothered by women who have them. Even with all the supposed openness and dialog about sexuality I think most women don’t really get the breast thing for men. We get it on an intuitive level and maybe that’s what the Pink Terror is about; why breast cancer is the scariest even though it’s not the one that kills most women. It’s about loss of power. Since the sixth grade when boys looked for the telltale bra straps and somehow just that was enough to rock them rock hard. What we have done though in our political correctness is silence men on their fear of a woman losing her breasts. Men are supposed to say, “Oh honey it doesn’t matter; that’s not why I love you; I’ll love you with or without your breasts.” But inside they are screaming, “Fuck no, I want my breasts.” (Because they do think they are theirs.) For all our talking about this we still don’t get it. Men go to bars where women don’t wear shirts. They look at magazines and have perfected ways to sneak a sidelong glance at the slightest curve of breast tissue. We laugh at that but there is more to this than the supposed adolescent behavior. It’s primal, primordial maybe, but it’s real.

Frankenstein

Today is the anniversary of Frankenstein by Mary Shelley. It’s a scary story in many ways. In addition to the monster and the implications for medicine and science there is also the story of Mrs. Shelley herself. Wife of poet Percy Blythe Shelley she ran herself ragged, competed, depended and sacrificed herself in order to promote her husband's work. She left this majestic book behind. A best seller in 1816 and rarely out of print since, Frankenstein is probably the most beautifully written of all the scary books.

The messages of Shelley’s monster classic are very much a part of our lives now. The questions that she raised so eloquently: What is life? What does it mean to be human? Where will science lead us? are as perplexing now as they were at the dawn of the scientific era. The issue of scientific intrusion into life is at the heart of today’s science news. We proclaim new ways to overcome disability, disease and death, but at what cost and to what limit?

When we hear the name, Frankenstein, a common first response is the image of the lumbering, rivetheaded monster immortalized by Boris Karloff. We picture the creature assembled in the laboratory from body parts, a man so ugly that humans fainted at the sight of him. This common misidentification of Frankenstein tells us how easily we tend to blame the victim and how often we overlook the bad guy. What we so often forget is that in Mary Shelley’s story, the large, disfigured man is simply “The Creature”. Frankenstein is not this patient, the product of medicine and technology, but rather the scientist: Dr. Victor Frankenstein.

Friends in the Time of Love and Cancer

Oh, if I could only remember to get a reality check before my imagination kills me first.

Twice this weekend a conversation with a gal pal saved me.

My friend Aletha is in a similar relationship. She and her beau are both in the process of separation legalities but moving ahead with their lives. After a night of torment I finally ask her, “Does the limbo bother you?” and it pours out. We end by laughing and speculating on when and how to wear our scarlet letters. I chose one of red chenille (an athlete’s letter) but am saving up for something bejeweled. Hester Prynne was a Puritan. I am not.


Saturday John became very dizzy at dinner. We cancelled the Netflix and crashed on the couch. As I sat there I imagined brain tumor, brain cancer, aneurysm or stroke. I saw my life slip away along with his. Fear, frustration, panic. The next day I talked to my pal Leslie and she tells me she was dizzy for two days—an inner ear infection—we all had the same cold.

I am saved by my friends and saved by talking.

Thomas Merton Affair

It was only a year ago that I learned about Thomas Merton’s affair. He was in his 40’s, already a writer and spiritual celebrity of sorts. He was a cloistered monk at Gethsemane in Kentucky. He had written Seven Story Mountain and other books. He was celibate and spiritual and married to the Catholic Church.

Then hospitalized for back problems he fell in love with a nurse. And she with him. They resisted, connected, pulled back, cried, committed, talked, broke up, tried again and loved each other. The relationship was consummated in a garden near the hospital and again near the Abbey. Some others knew and some sort of knew and others didn’t know at all.

And then the Master of the Abbey got wind, confronted Merton, “How could you?” and he had to choose. This amazing man of God didn’t have an easy time. He saw her again, quit again, cried, begged, wrote about it, tossed and turned, left only to come back and finally chose the Church and his life of monasticism and writing over her. But not easy, not sanely. He was never the same.

Two years later—allowed to travel to Asia—perhaps a consolation from his Abbott? Merton made one of his greatest speeches and then died suddenly in an accidental electrocution. We know from his journals that he was still grieving the loss of his great love. His pain was relieved.

But I have always wondered about “Her”. Who told her? How did she grieve? She lost him and then lost him again. Did she know of his despair? And did she know his prayer of faith and doubt?

It helps me to know that even Thomas Merton was never Thomas Merton.

Limbo

It is limbo in every way. Limbo in weather and seasonal shifts. Daylight shifts. Weather cold. More sunshine. Hope of Spring. It is limbo in my love life. Doing taxes and feeling married. Planning finances and feeling single. Doing the relationship and feeling unsure. At work each day’s mail shifts my mood. Enough money. Not enough money. We can grow. We will sink. Living in a kaleidoscope. In my spiritual life I see God clearly and then suddenly I’m alone and it’s cold out. I know I am loved and then suddenly I am punished. In old Catholic limbo the unbaptised babies waited for prayers and indulgences. In this limbo I offer my own prayers. A light unto my feet. Baby steps. Aching heart. Help me. Please. Thank you.

Thomas Merton's Prayer

My Lord God,

I have no idea where I am going. I do not see the road ahead of me. I cannot know for certain where it will end. Nor do I really know myself, and the fact that I think I am following your will does not mean that I am actually doing so. But I believe that the desire to please you does in fact please you. And I hope that I will never do anything apart from that desire. And I know that, if I do this, you will lead me by the right road, though I may know nothing about it. Therefore I will trust you always though I may seem to be lost and in the shadows of death. I will not fear, for you are ever with me, and you will never leave me to face my perils alone.

Thomas Merton
Thoughts in Solitude, p. 83

OnCologist: We Begin Again

Today John returns to the oncologist. The long break seemed to fly by and now we return this afternoon to the cancer center. I just remembered to grab the blue cancer notebook and put it in my purse for today’s appointment. I open it to see what I had written last and it was December 22 when the chemo port was removed. Today’s appointment is for blood work and a consultation with the oncologist. It is the start of looking for the cancer marker in John’s blood, a sign that any cancer may be present. We have had a nice break from this cancer world and we have moved ahead as a couple. Now a new phase. We begin again.

A Friend Dies

One of John’s friends has died. He also had cancer and I met him in that process. Two couples at chemo. His more advanced. His death predicted and delayed. His wife tired from the getting ready and then more waiting. On the weekend he had gone into hospice. Sunday he died. The sharp difference between “he is dying” and “he is dead”. Now an obituary, now a body, now different kinds of words and prayers. I am sad for his wife and his family. Sad for John to see this man he knows die. To see up close this reminder that this is what cancer does. And for me? Sad too and scared.

The Cancer Card

Yesterday, in a business setting, a woman, a complete stranger, said to me, “I’m a three time breast cancer survivor.”

All day I thought about that and wondered at her need to describe herself that way. I don’t know if she’s married, a mom, has cats, belongs to the Libertarian party, hates the sound of chalk on a blackboard but I know about her breasts and her health.

What I also know is that this experience has so colored her life that it has become her identity. That seems as great a tragedy as the surgeries and treatments she has been through.

Many years ago a therapist trying to help me with the thoughts and behaviors that kept me stuck, said to me, “Play another card.” She explained that we are all dealt a hand of cards--maybe 7 to ten cards--good stuff, hard stuff. But she said some people just play the same card over and over. “Look at your hand”, she said, “and play another card.”

I wanted to say that to the woman—whose name I don’t know but who believes that the most important thing about her is breast cancer. She cannot stop playing the cancer card. I want to say to her, “Please, for the sake of your life, play another card.”

Ring Thing

We are looking at rings. Commitment? Engagement? Promises? It raises all kinds of questions. Am I too old for this? Not old enough? Can a woman in her fifties still get engaged? Is engaged better than married? (I think so) Am I doing this for myself or for other people? (Hmmm not totally clear) Who are those other people? (Oh, I see.) If there were no “other people” would I still want this? Want him?

My Husband

Today is my husband’s birthday. I send a text and leave a message. I know this will be a hard day for him. It’s a “special” birthday so he is facing age, work, making a new life and loss of love. I walk a fine line within myself. I caused him pain. I am the loss. I broke his heart. And he is an adult. It was a marriage of two. We tried. Could I have tried harder? Could he have tried more? Could we have come back?

How strange it is to be in this relationship looking at that one. How strange to ache for his broken heart while wondering if mine is next. How much it makes me wonder if I know what I want.

Facing Fear

It’s Monday. Like many Mondays this one comes with fear. Not overwhelming for which I am grateful, but fear none the less. Monday fear is: the weekend is over and I am thrust back into the world. I fear the work week unrolling before me. Can I do it? Will I be found out? All my ideas of myself are tested. Do I do enough? Do I try to do too much?
On Mondays I am also thrust into a different view of this relationship. Friday to Sunday we are together or making plans or talking as “we”. But on Monday he is him and I am me. I wonder if the we is real. Have I succumbed to fantasy? Am I expecting too much? Or not enough? On Mondays I wonder if there will be a Monday in the future when I will wake up alone and start my week. Will I be sad? Or happier?

I decided this morning that I will not think about him today. It’s just too hard on Mondays. At the gym I began to catch each “him” thought and toss it away like a ball. Whoops, I caught one but then Whoosh, I toss it away like a kid playing hot potato.

At the office I am preparing for my class and I read an essay by Erica Jong about writing. A Monday gift buried there. She writes this:

“All the good things that have happened to me in the last several years have come, without exception, from a willingness to change, to risk the unknown, to do the very things I feared the most. Every poem and every page of fiction I have written has been written with anxiety, occasionally panic, always uncertainty about its reception. Every life decision I have made—from changing jobs, to changing partners, to changing homes—has been taken with trepidation. I have not ceased being fearful, but I have ceased to let fear control me. I have accepted fear as part of my life, specifically the fear of change, the fear of the unknown and I have gone ahead despite the pounding in the heart that says: turn back, you’ll die if you venture too far.”

Social Life

Last night we had dinner at the home of a woman I’ve known a long time. We are writing friends and fashion friends and ships-passing-in-the-much-too-busy-lives friends. I was expecting to be part of a large gathering but it turned out to be three couples. The other couples were married 10, 20 and 37 years. I worried about the “and you guys…?” question. But it never came. We speak of our experiences apart and together. ‘Have you been to London?” We both say yes. But we were not there together. That part of our life builds more slowly. We talk about movies and plays and other vacations and the yes means yes, together. Our social life grows and we become a couple. Then we drive home and dissect the evening. That is the real fun of being a couple.

The Dry Cleaning

Today in our caregiving group we were talking about what to do when someone asks, “How can I help?” Often the caregiver is so immersed in the day to day of caregiving that they can’t see what someone else could do to help.

One woman told the group that after offering help many times to her good friend: “Can I do the laundry? Can I cook something for you? Can I go to the drugstore?” Finally the friend said, I don’t know how to print something off my computer, can you do that?” It reminded me of the time in my life---years ago—when I was taking care of my brothers…both older than me and both very ill. They were dying at the same time. They lived in Pittsburgh and I lived in Baltimore. I would fly to Pittsburgh on Fridays and do laundry, go to hospitals, meet doctors and nurses and patch it together and fly home Sunday or Monday. I thought I had it all together even though it was hard. I was working full time and at work people were saying things like, “Isn’t she amazing” and “How calm she is doing all this.”

That was until the Monday I flew home from Pittsburgh and went to my closet to dress for work and there were no clean clothes. All my work clothes were at the dry cleaner or in the car to be taken to the dry cleaner. That was the day I lost it. Sobbing. Hysterical. On the floor. Gasping for breath. I managed to call a friend and between sobs choked out he words, “clothes” “dry cleaner” and “can’t do this.”

That friend came to my house. She brought me a clean shirt and blazer and she took the dry cleaning tickets and my bag of dirty clothes. For the rest of that summer she took care of the dry cleaning. Just that. The dry cleaning. That was the task that broke me and that was the help that saved me.

It’s the seemingly small stuff. It will be something different for each caregiver. So probe and watch. Then figure out how you can help.

After Making Love

Exquisite pleasure. And pain. The act itself. And the aftermath. Being filled. Seeing his pleasure. Creating it. Making it. Taking it all. Doubts set aside. Then the aching. Soreness. Ointment. The burning. Stumbling into pajamas. Hoping for sleep. Lists undone. Work still on the desk. Smiling.

After Making Love

Exquisite pleasure. And pain. The act itself. And the aftermath. Being filled. Seeing his pleasure. Creating it. Making it. Taking it all. Doubts set aside. Then the aching. Soreness. Ointment. The burning. Stumbling into pajamas. Hoping for sleep. Lists undone. Work still on the desk. Smiling.

Long Weekend

We are back from our long weekend. I must remember this. I must. Being away—even for just a few days—is such good medicine. For my heart, for my head, for my body. Last week I was running myself into the ground. Working and still sick. Finally four days away and sleeping, walking, laughing and nothing that HAD to be done. I know this is good but I forget. Or I convince myself that I can’t afford to go away, that I cannot leave the office. But I can. I have to change the way I think. But maybe I have to change my behavior and make myself go even when I think I can’t. God knows it’s been said: God rested on the 7th day, books on sharpening the saw, putting on your own oxygen mask before attending to others. I know. I know. But today, being rested, happy and the real gift—creative—I get it. God help me to remember this.

Haircolor and Cancer

In today’s paper there is an article reporting that hair color does not cause cancer. Apparently there’s been an idea that hair dye might be causing lymphoma or other cancer. A recent study says no.

It made me think, what if the study said that it might cause cancer?

Would I stop coloring my hair?

No. There are things that are worse than death. And there are things that make life worth living. A good hair cut and strategically placed highlights are right up there with prayer, meditation and Varda shoes.

Am I Loved?

We are getting ready for a long weekend. I remind myself that this matters to him. He wants this time as much or more than I do. I say to myself, “Get it”. Something in me would convince me otherwise. I think about past relationships when I did not believe I was loved—or loved enough—despite evidence to the contrary. Some old veil in my heart? Some old old message that tried so hard to convince me that I am not loveable. It seems like that would be a problem for me and it is, but it’s also a problem for those who love me. It is as if I am deaf and staring at the mouth moving before me…I sense something but I can’t get it. It is a kind of blindness and a kind of deafness. It limits me but also frustrates others.

I look at this passage from Luke that sits near my computer:

“And those who had seen it told how he who had been possessed with wild demons was healed.” Luke 8:36.

I believe; God help my unbelief.

What I Don't Want to Say

In my writing classes I often give this assignment as an exercise; Write what you don’t want to say. This morning as I begun to blog I find myself thinking, “I can do this later” and “I’m just not inspired today.”

But I take my own medicine. Here goes:

What I don’t want to say is that I am discouraged. I don’t want to say that it’s almost Valentine’s Day and even though I’m 55 and way to cool for that Hallmark marketed sentimentality to matter it does matter. I don’t want to say that I hate being the other woman and I don’t want to say that I’m beginning to wonder if this will be a long relationship or a transition. I don’t want to say that I feel hurt that he is not doing more to make future plans. I really don’t want to say that some days I want to marry him and some days I ask myself if I want to marry because I’m crazy about him or do I just want to win the point? Or make the story come out right? I don’t want to say that I miss my husband and think about all the things that we had in common. I don’t want to say that what I miss most about being married is being able to take that other person for granted; to know that I can look like crap, be inconsiderate and still be loved.

Thornton Wilder

Thornton Wilder wrote:

Without your wounds where
would your power be? The
very angels themselves
cannot persuade the
wretched and blundering
children on Earth as can one
human being broken in the
wheels of living. In love’s
service, only the wounded
can serve.

The What If Game

I have been sick for a week. Sinus, throat, cough, aches. Finally went to the doctor and she said that this is a winter bug. I feel better each day but it’s tough to shake. The other thing going on is I realized that in my head I play a little game called, “What if I have cancer?” The soreness in my mouth could be melanoma. My difficulty swallowing might be a sign of esophageal cancer. Maybe the lung congestion is really lung cancer? With each fantasy I think: Who would I tell? Would I get treatment? Could I go through chemo? surgery? Disfiguring surgery? Would I have the courage to kill myself? How would I get guidance to make that decision well? I think about doctors and hospitals. I wonder about love and romance and yes, sex.

Maybe this is a testing of situational ethics. Maybe it’s my narcissistic self-absorption. Maybe some lingering jealousy of John as the patient. Maybe I just can’t let a cold be a cold and accept the humanity and inconvenience of that.

Risking the Complications

When I was in my teens and twenties I did a lot of rock climbing and mountaineering. I was strong and boldly claimed that I’d do anything once. I hung out with men and women—mostly men --who climbed and flew and jumped out of planes and dropped into deep caves. I went down rivers in a kayak and once came so close to drowning.

Later I realized that my physical risk taking was a substitute from emotional risk taking. I could jump out of an airplane but I also jumped out of any relationship when I got to close to loving. Over time I’ve become wiser about physical risks and riskier about my emotional life. It’s worth the trade-off.

Here is a quote I kept taped to my wall when I was that rock climbing, kayaking, spelunking girl. It is by Rene Daumal in his book, “Mont Blanc”.

“You cannot stay on the summit forever; you have to come down again. So why bother in the first place? Just this: what is above knows what is below but what is below does not know what is above. One climbs, one sees. One descends one sees no longer but one has seen. There is an art of conducting one’s self in the lower regions by the memory of what one saw higher up. When one can no longer see one can at least still know.”

This may also be the answer to why I am willing to love this man even with all the complications.

We Have Cancer

Through this experience of love in the time of cancer I am learning how much one person’s cancer affects those near them, especially the lover, the partner, the caregiver. But I will always remember that he has cancer, I don’t.

I formed this distinction for my self and this emotional goal on the first day of “Chemo Class”. There were other couples there and other people with family members. The newly diagnosed patients were learning about their chemo and the caregivers were learning a bit of what to expect. The couple across from us was there because the husband was returning. He had a recurrence or a new form of cancer. And when the wife raised her hand to ask a question she said, “When we have chemo….” and I was taken aback by the construction and the word “we”.

No matter how much my life is disrupted or how this affects my work and emotions, and no matter how close this brings us as we deal with all of it, I am very clear that “we” don’t have cancer. But John does.

Why Can't I Be Sick

I’m mad. And I’m sick. A cold? A Throat thing? I take pills and cough syrup. It helps but I can’t talk. My voice is gone. I go to work and whisper. I joke about it but it’s not funny today. I’m mad at me for being sick and I’m mad at me because I don’t allow myself to be sick. Then, to add another layer, I’m mad at him too for being stronger—or maybe more stoic? He went through chemo and didn’t miss a day of work. So how can I take a sick day for a sore throat? I know it’s crazy but it’s in there. In my fine little head. It raises the paradox. Is being sick—and knowing it --really healthy? Maybe my reluctance to be sick is a sign of health. Maybe a sick day is a mental health day? Maybe. But I’m still pissed.

The Surgeon

She is cute. Dark-haired, tiny, smart and funny. I sense that she had to learn bed-side and knife-side manners. In Myers-Briggs I’m guessing that she is an ESTJ...you’d want that “S” and that “J” in a surgeon. You’d want a certain amount of confidence and being able to command and control.

The appointment was good. We both asked questions. Talked about the next steps. She will do his colonoscopy in May. The blood testing begins in March. They will test blood for the cancer “marker”. When and if it elevates then they look for more cancer. They don’t do regular CAT scans because, as she explained, you don’t want a lot of scans—after all excess radiation can cause cancer.

It was the first time we had left that office and felt normal. Only when we got to the car did I realize that no scary bomb had been dropped like there was each other time that we’d seen her: 1. I’m going to cut away your ascending colon. 2. You have Stage Three cancer and you need chemo—and a port. 3. The side effects are hard and they are yours. And now, a much friendlier visit, with laughter and smiles all around.

Surgeon Today

Another doctor’s appointment. We’ve had this lovely break from doctors but it’s time to see the surgeon again. I debate whether to go. It’s a check up, but I want to be there. Is it control? To hear what she says that he might not tell me? Because I want her to know that I am his? That he is mine? Maybe because I have been to every other one and I don’t one to break the chain? For six months of chemo I took the plastic wrapper off the newspaper each day and tied them together slowly making a long plastic chain that represented every day of chemotherapy. These doctor appointments are links in a chain too. But what does it keep in? Or out?

We are Sick

His cough became a cold. His cold became my sore throat. My sore throat became a cough. Now we are both hoarse and sniffling. We watched the Super Bowl with tissues nearby. We sleep and wake but not at the same time. In the morning I can see that he has been on the couch again. He sits up to stop the coughing and he reads Crime and Punishment. I toss and turn then wake clinging to the side of the bed. Am I sick enough for a sick day? Why is that so hard? I decide to stay home and the answer is clear. Home alone and quiet and not feeling well invites all the worries and fears. The kitchen counter has an array of medicines and remedies. I move from couch to bed. Tonight we will have soup and try to sleep through the night. Folie a deux? Or Flu for two?

It's Not a Battle

I have always been a reader of obituaries. Maybe I always knew I’d live in a surround of death. Or maybe I always loved the snapshot portraits of people thru the lens of their death. Now, since John’s cancer began I read them also to see the mentions of cancer, of colon cancer, of whether the illnesses were short or long. I see how many die after a “Battle”, “Brave Battle, or “Courageous Battle” with cancer.

Does no one have the courage to refuse a battle? To surrender willingly? To hand over the territory or treasure without a fight?

But then I remember: in most cases these death notices are written by the survivors, by those who watched what they think of as a “battle”. How many times was it not a battle but just doing the next thing? Whose military language is this and why is it necessary to talk about fighting, battles, enemies and winning and losing when this is life and death. We get both. One isn’t a win and the other a loss. Humans live and then die. That’s the whole package and it’s a “win-win.”

I have this same cranky annoyance when I hear advocates talk about “curing cancer”. I mean, if we do will all the people who die of cancer get to stay alive forever and ever? No, they would then get to die of something else. In most cases something more awful than cancer. We will die. Why is that so hard to grasp?

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.

The End of the Year

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

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

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

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

Amy Winehouse on Married Men

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

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

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

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

Discernment

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

Some discernment advice:

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

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

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

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

Cancer and Christmas

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

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

Hospital Bah Humbug

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

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

No Port No More

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

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

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

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

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

Post-Caregiver Let Down

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

No Care for the Caregiver

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

I am Sick and Tired

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

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

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

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

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

Sorting it Out

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

Cancer Triangle

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

At the Still Point

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

(from TS Eliot, Burnt Norton II)

Intimacy and Autonomy

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

Dressing for All of It

Ok, here is my sartorial challenge for tomorrow:

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

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

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

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.