Tuesday, March 31, 2009


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.

Monday, March 30, 2009

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.

Monday, March 23, 2009

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.

Sunday, March 22, 2009

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.

Thursday, March 19, 2009

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.

Tuesday, March 17, 2009

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?”

Sunday, March 15, 2009


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.

Saturday, March 14, 2009

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, March 13, 2009

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.

Thursday, March 12, 2009


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.

Wednesday, March 11, 2009


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.

Monday, March 9, 2009

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.

Saturday, March 7, 2009

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.

Thursday, March 5, 2009


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.

Wednesday, March 4, 2009

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

Tuesday, March 3, 2009

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.

Monday, March 2, 2009

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.