Roll Away the Stone

Big stuff today. Talking to my therapist about this relationship and about John’s cancer. Trying to sort out what is my over-the-top fear and what is diagnostic and statistically probable in colon cancer. We were talking about that and my sense of urgency to make some peace with all of this when I felt an idea or a realization move from the center of my body to my mouth and become words.

This is what I said to her: “I am afraid that if the cancer comes back, and if he dies, it is because I allowed this relationship to be, and I’m afraid that if the cancer comes back and he dies that it is my punishment; I will lose him and I will be humiliated.”

Even as I said those words I was amazed that it was coming out of me and I knew that was the true fear. Fear not just of cancer --that will hurt him or kill him—awful all by itself—but that in some way it is a punishment of me—and that the punishment takes the form of abandonment and humiliation.

Yes, of course these are my “issues” fear of abandonment and pervasive shame. But Holy Cow---the way the fear was coming to me was absolutely Biblical.

I could see her reaction as I spoke and we both got it that this is not just a psychological issue but a spiritual and even theological issue.

But here is what is both troubling and baffling me. I did not grow up in a fire and brimstone family; no one taught me to fear a punishing God; all of my spiritual practice and professed belief is in a loving God. But these fears belong to another belief system that I have not had any awareness was operating inside me.

Have I channeled my father’s early Catholic God? Is this cultural? Past life echoes? The collective unconscious? Really, it makes me wonder and it makes me pray.

This deeply held and silently operating belief is in my way. I knew it and my therapist knew it. I said to her, “This is in the way; this is why I cannot decide and why I cannot think clearly.” She had the exact image as I spoke this fear: There is a large boulder in my path.

I knew at once that even the image was Biblical. There is a stone blocking awareness, clarity and peace. The stone is blocking my belief in a loving God and in God’s will.

Who will roll away the stone?

Throw Them Over the Edge

Managing my own thinking—and not scaring myself to pieces –is one of my ongoing challenges as a caregiver and partner. Here is my new strategy to deal with scary thoughts.

Every morning I walk at the YMCA. The track is elevated and overlooks the large gym floor below. That’s a help often because I get to watch the Pilates class or the killer Boot Camp group grunting and puffing thru a workout that would kill most Marines. Watching them makes me very happy to be walking or jogging.

Today as the fear thoughts started in on me I had a new thought, “Throw them over”. So each time my head cooked up a new “What if…” scenario I’d say “Nope, over you go.” and toss that thought and picture over the railing and onto the gym floor below. It also helped to imagine these scary thoughts as scared, bratty little kids so when they land on the gym floor they can run around and wear them selves out—away from me!

Scared to My Roots

I had a hair appointment today. I love the woman who does my hair. She has the best color sense and a gift for seeing the whole person: face shape, hair type, and personality. She was the person who told me, “You have 43 cowlicks; your style will always be messy, sexy layers with lots of movement.” After learning that about my hair I now just ask for “messy sexy layers” and my hair looks and feels like me. And it moves a lot. Just like me.

She is also a great people person. We talk about relationships, men, sex, aging, work, and we talk about his cancer and how that changed my life. Therapy and great hair for just one, well, pretty big price.

Today when I sat down she said, “I’ve been worried about you.” She told me about another client that she’d mentioned before. This other client, a man, also had colon cancer about a year before John. She has used his story as a way to console and encourage me. The other guy did well and was always doing well. He just remarried a few months ago.

But now, bad news for this man I never met and whose name I don’t know. Cancer has returned and it’s wicked. Pancreatic cancer at full blast and “He has”, she tells me, standing very still behind my chair, looking at me in the mirror, “he has a year to live.”

I sit for 30 minutes while that information and the new warm-toned, golden hair color penetrates to my roots. Cancer back. New marriage. A year to live. Am I looking in my own mirror?

Lying Awake

Too many “What if’s?” I lie awake and they flood me: What if the next blood test is bad? What if the mark on his leg is more cancer? What if I have to face this again? For him? For me? What if I lose my job? Will my friends make it through another round with me? It was hard on everyone last time; everyone worked so hard to help me and us. Under all of this is the big one: What if we don’t have time? What if we don’t get to live out the love and hope and fun we have looked forward to? What if he dies while his kids are so angry? Will there be enough time for them to reconcile and not out of guilt? What will happen to them if they are forced to choose guilt or fear? Is there enough therapy in the world?

I keep trying to find a solution to the unsolvable. I keep wanting to make the equation come out right. But I don’t know how to solve for X and I don’t know the formula for his happiness, my peace, his kids to be well. The shortcut terrible solution I offer him is go back, go back.

They will never know how many times I sent him home and he wouldn’t go back.

Caregiving Touches All of Us

Former First lady Rosalyn Carter said this about caregiving:

“There are only four kinds of people in the world—those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”

Wonder Woman's Bracelets

At the end of the day
It’s your bracelets I want.
Not your hair
Or silly headband
Not the girdle
Belting your abs of steel.
Not even your courage
unadorned.
But the bracelets?
Yes, the bracelets
that can stop death.

Patrick Swayze

The news that Patrick Swayze has died makes me so sad. Like many people I loved him in Dirty Dancing and loved that he was a handsome but not quite classic handsome guy. And then over the past 20 months we were pulling for him even knowing that his cancer was bad and that his time was short. Watching his fight to work and love while undergoing fierce treatment made him all the more admirable and yes, manly. Prayers for him and for his family. And in his honor today let’s put on the music and dance.

Colonoscopy Done

All done and happily at home. Still a tad woozy from the magnificent drugs. (No wonder Michael Jackson had his own.) Results were fine. Doctor was great. Karma: It was John’s doctor.

Here’s my lesson though: One of my real fears was that I might have colon cancer as a kind of punishment for this relationship. Ok, I know that I say I believe in a loving God, but at times like this I must really have a mean Old Testament God lurking somewhere inside my belief system.

Other cancer caregivers have you had these kinds of fears about your health?

For the rest of today I just say thank you to that and all other gods and look forward to a lovely chicken breast and baked potato for supper.

Tonight at 8pm Obama speaks to Congress on healthcare. That too is part of Love and Cancer. Let’s listen in at 8PM.

Colonoscopy Mine

It’s 6:30. Normally dinner time but tonight I am drowning in 64 ounces of peach flavored Vitamin Water and Miralax. Yes I am doing it. I am –finally—having my colonoscopy tomorrow. So it’s prep time: Four Ducolax and a big bottle of Miralax with the once a favorite now doomed to bad associations, peach flavored water.

I’m more than halfway there but I made a terrible mental calculation. When I read that I needed to drink 8 ounces every fifteen minutes my brain told me that was four glasses. Yes, you see why I am a writer and not a scientist? Do the math I did not do—it's way more than four glasses.

Ok, I’m back now…uh huh, the stuff is working. I put the new Vogue in the bathroom and –I’ll be wanting to change this—“Gourmet Rhapsody”—the new novel by Muriel Barbery—she wrote the amazing book “The Elegance of the Hedgehog” but the new book is about the food critic from Hedgehog and yes about food. Food! Foood! Oh God food! I swear I’ll never drink peach Vitamin Water again and will I ever want to eat food again. Be right back….

So yes I am doing this thing that I have put off. And no the issue is not this prep and it’s not the procedure. Look up my bum all you want. (Truth: I will shave my legs tonight and use self-tanner—so what if I’m unconscious—I’m naked and I’m vain.)

No, the real issue is what happens after the procedure. In an instant I can be back in that miserable little curtained partition with John—now almost two years ago—and the doctor’s words, “you have a problem.” I really do like that he did not say “we..” He was clear about that; he said “YOU have a problem.” Then he used the words “growth” “cancer” and “surgeon”. The rest is history and the rest is on this blog—(if you joined us late go back to the early entries.) John had no symptoms and no problems. We were planning to go out to lunch but instead we went to a surgeon and went home to make a million medical phone calls.

The other issue is this: I’ve seen colon cancer up close and I’ve seen the surgery aftermath up close and I’ve seen the chemo up close and as wonderful as John has been through all I of it—it was pretty shitty.

That seems like an appropriate place to end. More to come.

Labor Day

Labor Day is the best holiday weekend, coming, as it does, with nice weather and no obvious family obligations. There is, however, a strum of anxiety that crosses these few precious days. This is the last call of summer and we want to order one more round of fun before the house lights come up on the day after Labor Day. In that harsh back-to-work glare we’ll have to take another look at the lists and the lives that summer’s warm intoxication allowed us to deny.

There is something good for us though in this Labor Day process. This is the time when many of us sort and discern and make our decisions for the coming year.
The New Year begins now, and we know that in our bones. For at least twelve years we started over on the first Tuesday in September. Back to school meant that we could try out a new identity forged over the summer. Maybe your look changed. Had you let your hair grow? Or cut it short? Would everyone sense the sophistication you gained visiting your sister in L.A.? Back in June you were that same old kid, but every September a new you debuted the day after Labor Day.

There were inner changes as well. In September you promised yourself you'd be more popular, more friendly, more outgoing. Or maybe you decided you'd study more and hang out with the good kids. Every single year you could try something new. You could be a scholar this year after a past as the class clown. Or you could be the friendly one after years as the grind and curve setter. The opportunity for a re-do came every year the day after Labor Day. And it still does.

No, January isn’t the right time for New Year’s resolutions. How could it be? We’re too busy with the holidays and broke from gift giving. Are you really going to create a new body or mind or spirit in the middle of all that? Come on.

September is the time to not only promise yourself a new exercise program, but to start it. It's light after work and it's not too cold in the morning. September is also much better than January for starting a diet. You are coming off a summer of fresh foods, and you’re not bloated by 30 days of holiday treats and booze. As for a new look; who can afford one in January? You wear your name off all your plastic just trying to get through the holidays, and then tax time is creeping in.

No, the new look and image and relationships you have been promising yourself come in September just as they did when you were a kid. Remember how it worked in Junior High? You decided to wear a tweed jacket because that summer you discovered poetry (or girls who liked poets). Or you promised yourself that you’d set your hair in a smooth flip every morning to look like those girls in the magazines.

In September you could try out in public all the looks you had practiced in the mirror behind your bedroom door. So what if the good intentions only last a few weeks. Some part of it always stuck, some part of the “new you” was the real you-- and real change-- and that's how you moved on.

We still can. The new you begins now. This is the time to be kinder, nicer, smarter, to listen more, eat less and hang out with the good kids. It's a new year. Happy New Year!

Nurses are Your Ally

A friend’s mother has anal cancer. They begin the process. I give her the best of my experience: the notebook, the tips on chemo, the caregiver resources, the importance of nurses, how to ask a nurse a question so she can give you a straight answer. Another friend’s mother has just had her second surgery for throat cancer. She has had her larynx removed. Bad enough but then the complications begin: emergency surgery, hyperbaric chamber, feeding, bleeding. She is so ill. The siblings all live far away so the “When do I go?” begins. I share my strategies and perspective. Again, “talk to the nurses not the doctors.” Another friend talks to me about her sister-in-law’s ovarian cancer. It’s a year after surgery, chemo, chemo again, radiation and now more chemo. She talks about the nurses.

I remember the many nurses who helped me through my brothers’ illnesses and deaths. I remember the day that a nurse waited until the doctor had left the room—he had just given me a lengthy explanation of my brother Larry’s diagnosis—Anti-Trypsin Disorder—and the nurse must have seen me trying to make sense of the info and reaching for solutions. She took me by the shoulders and held me very still and said, “Your brother is very ill.” I’m sure I said “uh-huh, the doctor was just explaining that…” and she looked at me again and said, still holding my shoulders, “Your brother is very ill.” She may have said it three times before I realized that she was saying—in the only language she was legally able to use, “Your brother is dying” . It was so helpful and gave me such clarity about what I needed to do and not do going forward. He was dead in four months but the doctor had never communicated the seriousness of his condition. The nurse did and told me what I needed to make decisions and plans.

In all of the conversations about healthcare and end of life care and long-term care I think about the nurses who see up close what families struggle with and I remember how they helped me to take better care of my brothers at the end of their lives.

Gift of Desperation

I have been thinking about the good of this year. I didn’t plan on a complicated relationship and cancer, but who does? I have written so much here about what is scary, hard, worrisome and painful. But there is another side and I have to stop and remind myself of that sometimes too.

I’m not a fan of the “cancer is a gift and made my life more meaningful” school of thought. There are many other gifts I’d like and many other ways I’d prefer to find meaning. I’ll take community service and beach vistas over cancer any day but here we are.

Some of the good?

In the last 24 months I have had to get on my knees and surrender more than I ever have before—and I have surrendered more deeply. This has certainly affected my relationship with my faith and spiritual life. I began working with a spiritual director and began to study spiritual direction myself. The relationship and the bonus of living with cancer and being a caregiver with a Scarlet Letter got me back to doing intensive therapy and doing that work at a new level of intensity as well.

That willingness came from the gift of desperation.

And out of that has come new understandings of myself, my family, new ways of thinking and from that new ways of behaving. It’s a work in progress for sure but I can see the changes that I wanted for years but could not quite get to. My thinking—ever so slowly—is changing and thanks to the gift of desperation—I am getting closer to the woman I want to be.

And yes another gift has been sensuality and sexuality. because I was pushed—the gift of frustration and annoyance at the reticence to talk about cancer in the official world of Cancer Land—I started reading and writing and talking about sex and cancer, and well, you can’t do that with out doing your own home work, so now I also have a great sex life and who would ever have guessed that would be an outcome of these really tumultuous years.

What the Body Says

Yesterday even I was too aware of the constant fear and checking with myself to see if this is the whole of it. It’s not but it is too much I think. The proportions are off. There was so much good on vacation and so much good a lot of the time. One of the very good parts and the unexpected—No the American Cancer Society will still not talk of this—the sex is wonderful. I keep reading all these “sex isn’t everything and intimacy is more than sex” articles but really. We live in these “skin bags” as the Buddhists call them, and the mind body connection is real. So sex is not just of the body. Can’t have it both ways. As a dancer and athlete I know the power of what can both be stored in and accessed through the body. We can access our past, memory, emotion and self knowledge through the human body. It is that powerful. And then at the last minute we pull back and say, “Well sex isn’t all that important? Is that prudery? self-consciousness? American reticence or just another kind of fear?

I’m not immune. When I consider this relationship I think, “Too much sex?” and “Too much emphasis on sex?” Is it compensation for something else? But again I come back to the body. “The body does not lie” Jung wrote and Marion Woodman says “when in doubt ask the body.” But sometimes we need a translator for the body’s language.

Vacation Reentry

Home from vacation.

It was a week of eating well (Federal Hill in Providence RI), art (Brown and RISD Museums), books (The Providence Athenaeum, and 20-plus used bookstores across Rhode Island and Massachusetts) and yes, the beaches. Ocean smells and swells for days.

We had fun, we laughed and we talked as we drove. There is something about that side-by-side parallelism in the car that allows intimate conversations. The “what-if” talks and the “do you think…” questions.

But this is where I write about cancer and so I must admit that cancer was with us too. I noticed two brown spots on his thigh. Are they new? Had I not seen these before? There is little real estate of the flesh we don’t know of each other. Are these age spots or melanoma? This kind of thinking is a constant part of love in the time of cancer.

On the long drive we talked about later, the future and when we retire. I participate and enjoy planning the fantasy homes (beach or city or both?) but there is a parallel conversation that runs inside me: Will he be alive next year? Will he be in chemo again? Will the beautiful fabric we bought for our bedroom chairs be a painful reminder? Will I sit on that pale ocean blue and sand beige paisley alone some day remembering when we spotted it in that shop on this vacation?

Cancer in the News

Here is another soft spot or minefield for those who love in the time of cancer. While John is in-between treatments and we live in a kind of honeymoon state…no obvious signs but blood work in thirty days (tick, tick tick…) I read the papers.

This week two cancer stories:

Breast cancer research shows that even the teeniest involvement of a cancer cell in a lymph node signals high probability of recurrence. (They use the word "relapse" but that make cancer sound like an addiction and that it comes back thru the failing of the individual. We blame the victim enough already in cancer, can we not call it “relapse”?)

No John doesn’t have breast cancer but I read (worry) between the lines. He had those cells, he had lymph involvement. Cancer is cancer, right?

Next story is bad testing, errors in labs, so much cancer not caught thru medical error. Ok obvious fear trigger there.

And then he coughs and I get three for three.

Yes, all fear, worry, and my crazy head. But I know the other cancer lovers feel this. It gets us in the heart.

But good news: We are leaving for vacation tomorrow. Two city days for music, museum and food and five beach days for reading, walking, and time to quiet my fearful heart and just be together.

Oh yes, sex too. Lots and lots of vacation sex!

Marriages

Just finished the great book, “Olive Kitteridge” by Elizabeth Strout.

A great book about the heart and hope and love and pain of a really bitchy, grumpy woman. The book opens the veins I think.

In the interview with the author at the end Strout says, “A marriage is always a source of great drama for a fiction writer. It is in our most intimate relationships that we are truly revealed; that is why I write about a variety of married relationships.”

“We are revealed”, she says. Yes, that is why I like being married. Friends say to me, “You don’t have to marry him.” and others closer still say, “He has cancer; you don’t have to take that on.” They mean, “You don’t have to be a martyr.” But I am not a martyr. Strout nails it. “We are revealed.” Being married and maybe even being a caregiver is selfish. It is a lens, a way of seeing oneself.

A mirror from Wal-Mart or a self-help weekend might be the cheaper, easier way to be revealed and to see oneself. But marriage works. Even when it doesn’t.

Mastering the Art of Relationships

We went to see the movie, “Julie and Julia” today. I loved that it’s a writer story times two. Yes, Child was also a writer. It was her writing –on top of her love of food—that made her cookbook work. So I got to see two women who think they are other than they are, who, through the acts of cooking and blogging and cooking and crying become who they already were.

And, as every review has pointed out, both had men in their lives who survived the cooking and the crying and who were supportive of what may have seemed crazy or not exactly clear at the start.

As much as I want to follow Gloria Steinem’s advice and “Be the man that you want to marry”, I find that it helps enormously to have a supportive man nearby even as I become him.

And so, deeply inspired by this movie, I came home and made dinner for John from one of my favorite cookbooks, “The White Trash Cookbook” by Ernest Matthew Mickler published in 1986.

Here is the recipe. It is called “Freda’s Five-Can casserole.” Makes a great Sunday supper:

1 small can boneless chicken
1 can Cream of Mushroom soup
1 can Chicken with Rice soup
1 can Chinese noodles
1 small can evaporated milk
1 small onion minced
½ cup diced celery
½ cup sliced almonds

Mix all of that. Pour into a casserole dish. Bake uncovered one hour.
Serve with bread and butter, fruit salad and vanilla ice cream.

Another Other Woman

Yesterday I had dinner with a friend of a friend. We were introduced because we are both artists and women with management careers as well. My friend who knows I am always in that “this or that” tug of war with work said, “You should meet Mary; she has the same struggle.”

So we had dinner and I was delighted. She’s smart, funny, thoughtful and spiritual. We talked through dinner about our careers, the challenges of having two kinds of work that we love, the big step to getting studios, the building of our portfolios. She mentioned her husband, his support for her as an artist, how they talk about these career issues. I asked how long they had been married. “It will be 16 years this month,” she said.

So I asked, “How did you meet him?” And there was a long pause.
“Well", she said slowly, "when we met we were both married to other people.”

Yes, she was the other woman. It’s 16 years later and they are happy—and so are the exes. A gift this dinner. She is the counterpoint to those who say, “It never works out.”

Kids

We are onto the kids now. His sons. My daughter. They each have a place in this and each have feelings that are over the top. His sons call me names. My daughter defends her father. I talk to other parents and they all say, “Time, time, time.” “Give time time”.

I get that intellectually but I am emotionally impatient. It’s fear of course. Fear that it will always be strained, always be ugly, always be split.

Do we have enough solid ground to weather the strains of these grown children pulling from both sides? That is my real fear.

Kids, cancer, us and time. What will happen if all that collides?

Cancer Worry

There are an unlimited number of triggers for this fear. It’s August and that means John’s next blood work is 30 days away; it’s summer and I feel the false optimism of the season; we talk of planning a wedding and my mind immediately calculates the rate of colon cancer when it appears a second time –four to six months. We’d never make it to a wedding. I look at calendars and wonder. I look at plans at work and underneath all of it there is a low whisper, “Could you handle that if he has surgery and chemo again?” I think of changing jobs and I think, “Manage a new job and daily caregiving?”

It’s always there. Even though on the surface and perhaps in reality there is no cancer now, today, it’s there underneath everything I do and think and plan. What if…When…
People who have had cancer know this thinking, and caregivers live with it too.

Bag Lady

Yesterday I had lunch with a writing friend. I was telling her about work, John, money worries and I said, “I just always imagine I’ll end up a bag lady.”

She looked at me and said, “Are you saving your good bags? I always save bags from Saks just for when that day comes.”

Don't Be the Ricky

A new book called, “How Not to Act Old”, gives us a list of things to NOT do which includes not wearing flesh colored pantyhose and not leaving long voicemails on cell phones and not dangling reading glasses around your neck.

And this one: “Don’t be the Ricky.”

The author explains that every relationship has a Lucy and a Ricky. Lucy is wacky and fun and fun loving and adventurous and the Ricky is worried, controlled, chastising, cleaning up after and very grown up. At some point grown up crosses the line into being old.

Are you Lucy or Ricky? Can you do one Lucy thing today?

Making Love and Making Peace

Today is about coming to some understanding of sex and sensuality and aging. His and Mine and Ours. Wanting to have all the freedom my body demands. Also wanting to be as free as possible while simultaneously haunted by messages of Good-girl and being nice. Nice can kill sex and being good makes it hard to be bad. Talking helps. But something else is lingering underneath. Maybe it is regret. Maybe it is summer melancholy. Maybe it is desire for the impossibly perfect relationship and the impossibly perfect me.

La Traviata

Yesterday was opera day in this arts week. We saw La Traviata at Glimmerglass Opera in Cooperstown.

The perfect juxtaposition: Before going to the opera we spent the morning in Cooperstown spotting ball players and broadcasters as it was also Hall of Fame Induction Day. I’m a baseball fanatic and powerfully moved by the game but also by the people and books and history and the idea of baseball so it was such a pleasure to be pushed and shoved along the sidewalks crammed with dealers and fans and autograph hounds and collectors and scalpers and old, old ball players of whom passers by whispered, “Who is he?” and “Is he anybody?”

But then the opera. Famous and well known music, sung beautifully. It’s a heartbreaking story: A “Courtesan” or Traviata—wayward woman, struggling woman. She gives up one life for another only to sacrifice that new life for family values and a father’s peace. She is dying, she sings, he laments and they embrace and then she dies. Yes, it’s an opera: she dies singing beautifully.

I have been at many death beds and though I have not witnessed dying people singing I have seen and heard stranger things so opera works for me.

Art and Courage

This has been my arts week. New York City for museums and dance and an absolute miracle of good luck at the theater. I scored the last—the very last --ticket for the opening night of Boris Godunov –and it turned out that the very last ticket was in first row center. It was a guest or reviewer ticket and I got it. The play was wonderful, the staging stunning—being in the first row put me in the jury box for this production which turns on the audience at the end.

But the thing that really has stayed with me since coming home from New York is the courage of the artists I experienced this week. Declan Donnelan, who directed “Boris” got to take a rousing curtain call on opening night and I looked at this 55 year old man imagining the choices that he has made in the last 30 years: a career in theater, in theater that is not “popular”, to work on the edges and take creative and therefore financial and therefore personal risks. Are a curtain call and a great big review in the New York Times compensation? Does compensation even come into the equation? Does he feel courageous? Or creative? Or is that my imagining for him? My projection?

Where do we take courage in our lives? The bumper sticker advocates for daily acts of kindness. Maybe we need small acts of courage each day and kindness will take care of itself.

Web Help for Caregivers

One of the most stressful challenges for caregiving and cancer is dealing with the people who love you and the person you care for. Just updating everyone and talking to people about what is happening can be exhausting. If you have been there you know that, “Let me know what you need.” does not help. You are often so tired that you don’t think clearly or you’d say: get the dry-cleaning, make sure there is milk in the fridge, walk my dog, and let me cry. But you are too tired to be this direct and you feel uncomfortable asking for the small but actually most helpful things.

There are two free caregiving websites that offer caregivers a way to keep friends and family updated—and they are yours only not public. These sites have a calendar device so your team can see what is happening and the list of needs can be posted and assigned thru the websites. Here is the trick: If you are the primary caregiver do not be the host of the site. Pick one competent helper and you talk to them and them only. They will post the needs list and the calendar. It’s human nature but it’s often easier for someone to say “Max needs milk once a week” rather than “I need milk”. I know we are supposed to be able to ask for what we need, but hey this is CancerLand, when we leave here we can all go to therapy and assertiveness workshops in our free time.

The websites to check out are:

LotsaHelpingHands.com

SharetheCare.org

No Saints in CancerLand

Yesterday I gave a class for caregivers. The one thing I told them and that I am adamant about is this: You must never allow anyone to call you a saint.
Saint and all of its companions: selfless, good, wonderful and other praiseworthy words are traps for caregivers. Yes, we know what people mean when they say words like that but it’s a trap. If you are a caregiver and someone says, “You are a saint”, you must snap and bark and hiss and slap and say “No”. You must say “I’m no saint; in fact, I’m a real bitch sometimes.”

The danger to taking in those well-meaning words is that soon—sooner than you’d think—you start to feel like you should be good and you should be a saint and that means that the anger, the sadness, the inequity and most critically, the resentment will get pushed below the surface. When that happens you lose yourself—and in fact, become a not very good caregiver because your most creative energy is used up in keeping the truth hidden from yourself.

The best caregivers can say they are angry, resentful, hurt and –the biggie—that they wish caregiving was over. Sometimes “over” means their person gets well and sometimes “over” means their person dies. Wishing for it to be over is not unloving and it is not uncaring; it’s just a real, honest feeling for a human being stressed to the max.

For years I cared for my brothers. One was dying of ALS and one was dying of Anti-Trypsin Disorder. Two horrible diseases. Some people in my life said all the “saint” “good” and “wonderful” words. I survived because I had two people who could hear my truth. I had one person to whom-- when my brothers care was especially hard—I could say, “If he doesn’t die soon I’m gonna kill him.” That friend also knew that I cried myself to and from Pittsburgh every weekend and who knew the devastation of losing my big brothers. But my sanity was saved by being able to say the truth of the moment in the moment.

If you are a caregiver you must find someone like that in your life or online. A place you can say, “I am no saint”. and “This sucks.”

Cancer Caregiver Redux

A year later and I am walloped by unexpected resentment. I am remembering last July and how everyday was exhausting from taking care of him, all the household needs and work. He was lost in a fog of chemo and exhaustion. I had no partner and no comfort. But people all around me were praising me and saying wonderful things and I bought in.

I realized this week that I was making a deal and I didn’t even know I was doing it. I thought this summer would be mine; that he would be so appreciative that he’d say “Hey honey, this is your summer, lets make this one good for you.” Wrong. Surprise. The unspoken deals and even the unconscious deal I had made within myself. This summer is hard too and no one is giving me roses or a break.

Time to grow up: No one is going to take care of me but me. Makes me sad and the resentment is there, but better to face this than live is a pond of resentful expectation.

Jealousy and the Other Woman

“The girl wants the mother and feels shame with her jealousy for wanting the mother. The father is the fulcrum in the triangle of the girl reaching for her mother.”

--from The Mermaid and the Minotaur

I found this in a file dated 1996. I was struggling with jealousy in some relationship then and trying to understand it. What is striking about this idea is that it explains something I have felt and been unable to articulate and that is the complexity of jealousy for women. Women’s jealousy about another woman gets confusing because there is an element of desire for the other woman even as we wish to kick her out. A woman not only wants her man to give up or quit the other woman but she also wants the other woman. This explains how anger gets misdirected in infidelity and affairs. It explains the obsession with “her”. There is a taboo being activated and some dark homoerotic lust/revulsion pushing up from down deep in the archetypes.

I have felt this before and I have been the object of this quality coming from other women’s jealousy toward me. I have certainly felt this confusion about John’s ex-wife, and I have been ashamed of these feelings in myself.

We are not simple creatures and so it means we must—and I must—be gentle and self-forgiving.

Taking a Risk

The past week has been good. Travels and reading and art. And fear. Fears rise up again and push me and pull me. It is cancer and death and money and other women and the story in my imagination always has the same ending: I am alone. Years of therapy have taught me that I come by this fear honestly. There were huge and horrible abandonments in my early life. But while I can chronicle them they have left scars and bad emotional habits. One is scaring myself to death on a regular basis.

But this week something new. Risk taking by going toward John and not away from him. Risk taking by going toward intimacy rather than girding myself from it. Risk taking by letting him in—bit by bit—on the fears and fantasies that make being me a daily challenge.

I have a new idea. This vulnerability-and it is that—is not a concession of weakness or something I give over to him, but a strength in me and an acceptance of the woman I am who has survived so much and who still wants to give and receive love.

Lessons from Drumming

In 1994 until 1996 I studied African dance and had the opportunity to dance with live drummers. It is the best way to dance—feeling the percussion as it enters the body not just the ears.

In my notes from 1994 I found this note to myself that I wrote down after an African dance class at Omega Institute. It says:

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

There is a dance lesson for the heart, for the lover and for making choices in a relationship.

Just Last Year

We were at the beach this weekend visiting John’s mother. We had a good time seeing movies, taking walks and eating her amazing meals. Everything, everything is from scratch…I keep wondering where to buy this marvelous ingredient called “scratch”!

But there was a haunting feeling too that we both felt. We realized what it was when we walked up the tall staircase from the beach. A year ago John could not walk those stairs easily. The chemo was exhausting him. He could only go into the water up to his waist because of the port installed near his collarbone. His hair was slowly coming out. He was more sensitive to the sun and his belly—usually firm and strong-- was still soft from the surgery.

A year ago. “This time last year” I kept saying to myself. We talked about the fear we could not even mention a year ago. It’s not really gone. In today’s obituaries I read of a woman, 57, dead from colon cancer, so I know it’s out there. A specter. A threat. But maybe that haunting has a good side. It keeps me grateful for every day we have. It keeps me asking, “How important is it?”

It's Not Just the Boys

Another Governor has had an affair. This one is South Carolina. His staff thought he was hiking the Appalachian Trail. But no, he was in Argentina with his mistress. An eight year relationship but he got caught. Tears on TV, a hurt and angry wife. Oh, we shake our heads, “What is it with men?”

But, and I know I am throwing myself in here, it’s not “the men”. Every one of these men who had an affair had it with a woman. So what is it with people?

Yes maybe there is a power/political thing going on. Bill Clinton et al. The privilege of political office etc etc.

But more likely it is something human that says “I want more; I deserve more; it’s here, I’ll try.” There is something about mortality in affairs. Sex is life. Passion affirms libido. Libido is creativity long before it has anything to do with sex. Infidelity is a tragic and very backhanded plea to live.

I was one of the women. I know what a man can look like when he wants to live and when he wants to not have not lived. The best men, the nicest men and even the smartest ones do fall.

Power Games

I’m reading Sara Dunn’s first novel, “Big Love” this week. I came to that after reading her new—and second novel, “The Secrets of Happiness”. She’s a terrific writer, whom I suspect deeply mines the real and factual to create the fictional. But it works because she is funny.

In the new book—really the old book--she is writing about the man she lives with. One day he goes to the store and calls to tell her he’s not coming back because he loves someone else. This is the kind of real or fictional scenario that allows for endless rounds of “Better or Worse”. Better to be surprised? Worse to suspect before you find out? Better to get it on the phone? Worse to not even be able to hit or scream?

But later in that chapter Dunn writes this:

“The person who loves less has the power in the relationship. The person who is not afraid to leave has the power. Infidelity is power.”

That stopped me. I had to read it over and over. Another mindless gal chat game: Do you want to be the one who loves or who is loved? Do you want to be the lover or the beloved?

Is infidelity power? Or is it revenge for feeling no power at all?

Reconnecting Reawakening Reunion

This weekend I was at my graduate school reunion. Three days with writers and artists--people who use their creative energies daily in their work. People I have not seen for ten years. People who are ten years older than they were the last time I saw them. People who mirror back to me who I was and who I am now. We talked about the kinds of work we are doing. We compared that to the work we thought we’d do when we got our graduate degrees ten years ago. After several meals and after several layers wore off we also talked about marriages that failed, marriages that struggled but stuck, children doing well, children struggling and children that died. We talked about relationships that took odd turns: the friends-to-the-end friend we made at school that no one has heard from in years, and the unexpected friendship that clicked after we all left Vermont, and the friendship that became a love affair and the ones that began to bloom this weekend.

I found that some people remembered me married and some did not, some knew of John from this blog and others got the full blow by blow of love in the time of cancer. What was surprising and comforting and made me believe in myself and others again was the kindness and caring of old friends and strangers.

Testing

Tomorrow I take my ex-husband for his colonoscopy. In the past this would have just been an errand, a way to help a friend, a companionable thing to do. Over 50, we all have this test and you need an escort—a driver. So, over the years I’ve done it many times. But is it so changed now because of John. That one time sitting in the small curtained cubicle waiting for the post-colonoscopy discharge, expecting to hear, “A few polyps; we’ll see you in five years” but instead heard, “You have a problem.” and then the year of cancer, chemo, surgery, the pump, numb hands and feet, and fear of his death—which has never really left.

Already I have this fear again for my husband. Not wanting those words for him or me or anywhere near us. One test—not even mine—changed my life.

If You Like it then You Shoulda Put a Ring on It

Last night we went for a walk in the rural cemetery where we have walked and talked for years. We had been there before we were lovers and after too. It was the place we had each gone alone during the time when we had taken our break from the relationship.

We sat on the stone wall remembering our conversation from years ago. That first day he told me that if we fell in love, “my sons, who love their mother, will hate me forever.” He knew.

Last night, on that wall, he said, “Baby, will you marry me?”
And I said “Yes”.

And then I put on the ring.

The Other Woman

The past two days Dear Abby, the advice columnist, has run letters from and about the “other woman” (OW). Most are scathing—the hatred runs so deep. A few are guilt-ridden, apologetic, defensive. Some are from men—the “other man” and the guilty spouse who is having an affair with OW.

I read them. I make myself read them and I make myself feel the anger and shame all the way through. I don’t want to pretend I was not the OW and I don’t want to defend it. I can explain it to myself and I can rationalize and now—years later—I can say that this is what became of the relationship, and I can enumerate all of the reasons and “issues”. I have lived all the parts of this equation. None of them are good, none of them are faultless, none are without pain.

Obsessed by Dress

“What shall I wear?” is society’s second most asked question. The first is, “Do you really love me?” No matter what one replies to either one, it is never accepted as settling the issue.

--Judith Martin b. 1936

Happy Birthday Day

John’s birthday today and it has been fun. The gifts are all golf-themed: balls with his name and special red tees and a book of golf and grammar and new golf shoes. We played 18 holes this morning then both went back to work. I made a cake—chocolate and coconut, my own recipe. Birthday dinner tonight. It feels normal and natural and the very reality of that—after a year of cancer—makes this day quite special.

Brad and Angelina

When I teach writing to 10th graders we always begin with current events. In their world those events are celebrity and music based. Every year for the past six years Angelina has delivered the goods and made my teaching life easier.

Now, today, in the car I heard the news: Brad and Angelina are over!

Is it an omen?
Should Jen take him back?
He’s a dad now.
What a mess!

This Fish Needs a Bicycle

I am 55 and I have decided that even though I do not completely understand my relationships --or myself in relationships--they are important to me. I was raised in and influenced by the unsettling mixture of Helen Gurley Brown and Gloria Steinem so I enjoy being in love but always with that odd guilt or shame for liking to have a man in my life and in my bed. I have decided to not care what others think--or in truth, to care a bit less--and I have decided to accept that it may be a past life thing, or a dysfunctional family thing, or maybe it’s a social construction of reality and gender relations thing, but I like men. I have pretended, dissuaded, defended and confounded myself and others because of these men certainly. But it’s true. I do. I like having a man in my life.

Summer Plans

We sit with calendars and block out vacation. It is a mixed blessing though. If I don’t claim some definite time off from work the summer will fly by and I’ll never see the beach or have real vacation as a couple. But when we sit to plan and mark off the days: this one for the beach and that one for the city and that one for the family event and then times to go see dance and theater and music –and now we add golf and swimming...suddenly we are turning the pages and saying "save that date” and we are looking at Labor Day. I do not want to wish—or worry—or plan my summer away. Where are the lazy, hazy days? Where is genuine leisure?

Triangles and Words That Heal

This morning in church we prayed, “But only say the word and I shall be healed”, and I laughed out loud. This week it was words that jump-started some healing for me: The Karpman Drama Triangle, a psycho-social theory developed by Stephen Karpman. In it he describes the cycle or triangle of how we move from rescuer or persecutor to victim—always cycling thru to victim, victim, victim. It came to me seemingly out of the blue in some unrelated research but there it was, the very “word” I needed to hear and heal.

It is perfect and perfect timing. I realized this week that I have been trying to out-victim the victim in my relationship with John and in other parts of my life as well. Karpman would simply say, “Uh huh.”

Here’s where it get’s tricky: cancer care. People with cancer—those in the throes of chemo and surgery are kind of victim-y and cancer caregivers—those in the midst of physical and emotional exhaustion are wonderfully victim-y, and those surrounding both of them make perfect persecutors: “You should”, “One should”, “You never should”, “You must”, “Do it this way, and “Well…”.

Cancer care is loaded with victims, rescuers and persecutors all vying for top billing as best and biggest victim. It’s so easy to say don’t do what you don’t want to do, or take care of yourself first—God knows we preach that crap all the time--but in real life and real caregiving theory is honored in the breach.

Maybe the Karpman Triangle can be taught to caregivers. Maybe we can give out little triangles as a reminder. Maybe I need a triangle tattooed on my right hand.

Hester's Dress

The door of the jail being flung open from within, there appeared, in the first place, like a black shadow emerging into sunshine, the grim and grisly presence of the town-beadle, with a sword by his side…. Stretching forth the official staff in his left hand, he laid his right upon the shoulder of a young woman, whom he thus drew forward; until, on the threshold of the prison-door, she repelled him, by an action marked with natural dignity and force of character, and stepped into the open air, as if by her own free will. She bore in her arms a child, a baby of some three months old, who winked and turned aside its little face from the too vivid light of day….

When the young woman-the mother of this child-stood fully revealed before the crowd, it seemed to be her first impulse to clasp the infant closely to her bosom; not so much by an impulse of motherly affection, as that she might thereby conceal a certain token, which was wrought or fastened into her dress. In a moment, however, wisely judging that one token of her shame would but poorly serve to hide another, she took the baby on her arm, and, with a burning blush, and yet a haughty smile, and a glance that would not be abashed, looked around at her townspeople and neighbors.

On the breast of her gown, in fine red cloth, surrounded with an elaborate embroidery and fantastic flourishes of gold-thread, appeared the letter A. It was so artistically done, and with so much fertility and gorgeous luxuriance of fancy, that it had all the effect of a last and fitting decoration to the apparel which she wore; and which was of a splendor in accordance with the taste of the age, but greatly beyond what was allowed by the sumptuary regulations of the colony.

The young woman was tall, with a figure of perfect elegance on a large scale. She had dark and abundant hair, so glossy that it threw off the sunshine with a gleam, and a face which, besides being beautiful from regularity of feature and richness of complexion, had the impressiveness belonging to a marked brow and deep black eyes. She was lady-like, too, after the manner of the feminine gentility of those days; characterized by a certain state and dignity, rather than by the delicate, evanescent, and indescribable grace, which is now recognized as its indication. And never had Hester Prynne appeared more lady-like, in the antique interpretation of the term, than as she issued from the prison.

Those who had before known her, and had expected to behold her dimmed and obscured by a disastrous cloud, were astonished, and even startled, to perceive how her beauty shone out, and made a halo of the misfortune and ignominy in which she was enveloped. .. But the point which drew all eyes, and, as it were, transfigured the wearer,-so that both men and women, who had been familiarly acquainted with Hester Prynne, were now impressed as if they beheld her for the first time,-was that Scarlet Letter, so fantastically embroidered and illuminated upon her bosom. It had the effect of a spell, taking her out of the ordinary relations with humanity, and enclosing her in a sphere by herself.


---Nathaniel Hawthorne

Rainy Day

It’s cold and rainy inside and out today. In therapy I talk about my family—again, and my father--again. I feel distracted at work, not focusing on things that matter. My friend Liesl calls to say she is exhausted. Her mother is dying of cancer and there are so many doctors and so many appointments. Another friend is deciding whether to take a big job. It’s the top of her career but it means a move. Another friend is at the end of her divorce process---three years after many more years of finding out in painful layers that her husband had a secret life. Maybe it’s a rainy day for everyone. I want the sun to come back and I want my own joy and peace to return. I am wondering if I have to leave this relationship to find that sun again. I can barely breathe when I think about that.

Mind Body

Last week I met a man on the train to New York City. One of those “I hope he doesn’t try to talk to me” moments and then I noticed that he was reading a Kindle and I blurted out, “You have a Kindle!” So then all hope was lost for trying to stay cool and aloof and send “leave me alone” vibes. So Kindle always leads to, “What do you read/are you reading?” and an hour later we were talking about the mind-body connection and Candace Pert’s work on neurophysiology. Well, he was talking and I was taking notes.

I finished the book last night and in addition to making me want to try meditation again I really want to try not scaring myself to death all the time. I see—from this neurophysicist’s point of view-- what I am doing to my body when I terrorize myself. All thru John’s cancer and even now as I unpack and repack this relationship—I go straight to fear. That’s not new; it’s a lifelong habit. But what that adrenaline and coritisol are doing to my body. …well, I guess now I am interested in saving my body too. Yeah, I’m feeling like it’s time to take care of me.

This week I’m not sure where we are going or if we are going, but I am going forward in any case.

Golf Lesson

Golf Lesson

It’s the little things. Shifting my weight to my right foot. Not dropping my left shoulder. Leading with my hands. Trusting that I will hit the ball. Going for it. Staying focused. Laughing.

Sex Lesson

It’s the little things. Shifting my attention. Not worrying what he thinks. Loving my body. Loving his body. Trusting that it will happen. Going for it. Staying focused. Laughing.

Memorial Day

It’s been one of those perfect weekends. Weather. People, Relationships. Work.
It began with dinner out Friday with old and new friends. A conversation that flowed from theater and books to business and travel. Sex. Then Saturday began with a meeting and some planning for the summer. Sex. A day trip to Hudson New York. Looking for art for our apartment. Mexican Radio for dinner and a movie with Audrey Tatou. Sex. Sunday brought writing time and schoolwork for both of us. Lesson plans and thinking through creative projects and possibilities. Procrastination. And sex. Out to the movies to see “Sugar”, a surprise but powerful in the truth it told rather than the fantasy I wanted to be told. Home to ice cream and almost sex but really sleep. And today, Monday, began with a parade for him and website work for me. Then book shopping. Playing golf. and a shower a deux. Ice cream at McDonalds and yes, almost sex.

Again and Again

Take out the repetition
They all said.
I said, “No”.
But you repeat yourself,
Yes, I said, Yes, I do, I said, I know
I do.
But you have to pull this together, they said.
And again I remember Gloria at Joy’s grave
telling me to pull myself together,
And I thought, What’s the point
of death if we
pull ourselves together?
But of course, it’s for them that we must be
together.
To see it raggedy
unfinished, unformed, disconcerts; “breaks the contract”
Is that so bad?
This contract broke so long ago.
But you repeat yourself, he said again
“Yes” she echoed, “You’re repeating here, do you see that?”
I hear you, I repeated, I responded, I replied.

I tapped my pen and said,
This is like a set of boxes, you know, like a telescoping set of boxes, you know,
like inside each other?
You can get them at Pier One”
Glossy shiny blood red lacquered paper boxes.
Big red box, take off the lid
inside a red box, take off the lid
another red box, take off the lid
again red box, take off the lid, and then, finally
red box, small, smaller, smallest, take off the lid.
What’s inside?
A diamond ring? No

If this was a short story
Something would be in the box
But this is nonfiction.
And so there is nothing in the box,
and only the tiniest bit of nothing.
There is nothing inside the smallest, the last, the end of the boxes
You want there to be something inside that box, like a
diamond ring, car key, a rune stone, a plastic charm, even a folded bit of paper
Something, anything we can make meaning with.
There is nothing inside the smallest, the last, the end of the boxes.

“People are meaning making machines”, the trainer repeats,
tapping her pointer again at the sentence on the board.

So we insist there is something in
the last box or we leap:
“He was holding his orange juice and fell over and blood came out of his
mouth”,
I am telling this to a woman on the bus.
I tell the minister, “He was holding juice, orange juice and he kind of fell over and
blood came out of his mouth,
and to my new boyfriend,
“He was holding this juice and then like he fell over and blood was
everywhere.”

This is not how we make meaning.
This is meaning.
we don’t have to make it,
we just have to keep
Repeating, and repeating, and repeating, and repeating.

Perseveration, most beautiful word.
Er, er, er,
It sings its own songs
symptom of itself
tells its own story
But that’s the point,
they all died.
They died.

Like the boxes, they go on
opening
nothing but boxes
Repeating.
Take out the repetition?
I don’t think so.
Anxiety and fear encased in every word
Do you get it? What I’m trying to say?
You see now?
They died you know,
They all died.

New York City Day

Yesterday was a special day. I spent the day at The Met in New York. It was a day of friendship and love. My dear friend of 25 years—who has seen me through so much—and me of her too—was in New York for one day interviewing at The Met. I took the train—then walked to the Met...talked and talked between her interviews. A reminder that I had a life before and that I will have a life again. She reminds me that I am a writer and that I am loved. We talked about all the changes we have each been thru—all the growth from all the hard things and the hopes we both hold for dreams yet to be fulfilled. We talked about relationships and about John. She does not want me to hurt anymore. In the afternoon I walked back to Penn Station stopping in an out of stores, window shopping, running the perfume gauntlet at Saks, and buying a bright green quilted jacket at Orvis. A kind of green that surprised me but it is, now that I think of it, the green of new grass on a early summer day—one much like today. It is new growth and new life and the color of hope.

These Honeymoons

It’s all perspective and experience.

I talked to a friend today whose husband has ALS—Lou Gehrig’s Disease. It’s a horrible illness and a horrible death. I watched my brother die of ALS and the only possible gratitude was that he didn’t make the expected 18 months but rather died in a compassionate ten.

Talking to her we were exchanging “good news”: Her husband is at home and still able to do some work. John has passed one test and we get a breather until others begin. “This is our honeymoon” I said to her. “Yes”, she replied, “ours too.”

No one else would think these are places for laughter, gratitude or honeymoons, but for love in cancer or ALS or other serous illness they are exactly that. And just like any other honeymoon we break out the nice dinner, the candlelight and the pretty lingerie.

The Good News

Yesterday was John’s colonoscopy. We were at the hospital before 7am and he was done by 10. I was pleased that I was finally able to pray for acceptance no matter what the outcome might be and was able to pray to be present for him –and not just think about myself—though that was hard. The fear fantasies and scenarios of how this might unfold had me stuck in a pretty selfish place.

I left him in his room and got a beeper in the waiting room. It seemed like time flew and the beeper summed me to the recovery room. When I walked into an empty room I panicked fearful that they were planning to talk to us in private and I know what that means. But then he was rolled in—pretty drugged and dozy—and the nurses started reading from his chart. She had to say “No sign of cancer” three times before it registered that she was telling me this. I started to cry. I had not realized that I had been holding so tight. “No sign of cancer”.

For the rest of the day I kept saying to him, “So you’re going to live.” And he said, “and live with you.”

That was sweet.

The Prep

Everyone will tell you that “the prep” is the worst part of a colonoscopy. And they are right. John’s next one is Wednesday and he’s getting ready. And so am I.
While he is buying juice and Ducolax and limes (*see hint below) and beginning his fast, I am calling friends, writing lists and making deals with God.

His prep is physical and brutal. He has the emotions to manage as well. We don’t know what the odds are this time. I return over and over in my imagination to a year ago when his routine colonoscopy turned into cancer and spun us in circles.

My prep involves lists of questions, packing for a day of hospital waiting rooms, trying to stay positive and hopeful and dissolving into fear.

We survived this year of surgery, chemo, caregiving and living on hold. We’ve had a few months of peace and taking the tiniest steps toward having a future. But now the fear has returned. In a few more days we’ll know. I want to stop time and speed it up and yes, I alternate deal making with surrender. I ask for favors I don’t deserve from God and every family member we have on the other side.

Limes: I’m told this is the Katie Couric tip: when drinking the lousy flavored colon prep drink you should suck on a lime before and after each big swallow. The nasty flavor will never reach your taste buds and so you’ll not experience the aversion or the gagging that can come when you get to the last bottle.

Everybody has Something

This week L’s mother’s cancer returned, and B’s stomach problem turned out to be something much more serous than indigestion. J’s dad was diagnosed with early-onset Alzheimer’s—and he’s only 53. G’s daughter—so pretty and so smart --has a serious mental illness and M’s daughter now has confirmation that her tremor is Parkinson’s. K’s granddaughter is dying and A’s sister has gone out again—a relapse after being sober ten months. D’s husband left her and he’s not coming back.

Everybody has something. So many have lost jobs, can’t make the rent, and are afraid, scared and suffering. It is humbling and it is hard.

Again, Again

Last night in class my heart began to pound. May 5. John’s colonoscopy is in eight days. What if? If the news is bad what will we do? Surgery again? Chemo again? Hospital rooms again and again?

Last year it was all new. We didn’t know what was coming so even though it was hard we just kept moving expecting each next step to make things better. I didn’t know what was coming. I knew about hospital rooms and ICU and sleeping in chairs from taking care of my family all those years when they were dying. But cancer was new and chemo was new, and we kept at it. I didn’t know how hard it could get.

But now I do. Hospital again? Chemo again? And the scariest thought: If his cancer has come back it means more than surgery and treatment. It means we won’t get the time together we dreamed of. It means he will die.

I tell myself that even if that is the outcome, even if that is his and our fate, that I will be OK. I have supports and resources and people that I did not have years ago. But today I do not want resources and supports and people. I want him in my life. I want more time to love him.

Monday

Yesterday we did a cancer walk. It was a fundraiser and I walked with old and new friends. John walked nearby, conversations moving in and out of school, work, health, movies. It was a marker. We did this walk a year ago. It was a different walk this year and we are different a year later.

Now the Monday morning feeling. A new week. Refreshed. Bringing new ideas and new resolutions to this next six days. But the fear in the belly is there too. Him, me, work, them, money, doctors, and more work. The constant feeling of not getting enough done, yet knowing that I do so much. Surrender comes to me. Surrender to God, to process, to faith.

Ages ago someone said to me, “God’s will is what is.” and “IF you want to know God’s will leave your house, start walking and when you hit a wall turn left.” As if we even get to decide God’s will.

The challenge now is to believe in a loving God. To believe I am cared for. That all will be well, no matter what.

Bull Durham: Why Women Love This Movie

The past couple of nights I have been watching Bull Durham. This is the movie from 1988 with Kevin Costner playing an aging catcher in the minor leagues. This is a movie that appears to be about baseball life with its travails and hopes and the desperate desires of men who want to play ball for a living. It is seemingly a men’s movie with all the swearing and ass slapping and drinking and real life baseball lore. But no, this really is THE all time best chick flick.

Yes, we love Kevin Costner from the first moment he arrives in the locker room wearing his navy blazer, rumpled white shirt and the khakis that are the perfect shade of tan with a hint of olive. He’s a manly man who in the first 20 minutes gives the fabulous, if too artful, monologue about his beliefs which includes, “I believe in the cock, the pussy,, the small of a woman’s back…that the novels of Susan Sontag are self-indulgent, overrated crap”, and which ends with his belief in “long, slow, deep, soft, wet kisses that last three days”.

Yes! You had us at “long, slow and deep”—and yes, at the Susan Sontag part too.

But there is a later scene that truly outs women for what they truly want.
“Do you want to dance?” Sarandon asks Costner, sitting in the kitchen late at night. He says yes, but surprises her by not dancing but instead by sweeping all the food and dishes off the kitchen table onto the floor. He spins Sarandon onto that now empty table and they go at it rolling and clutching.

Oh, that’s part of it. We want a man to want us that much; we want a man who wants to make love a second time so much that he goes for it on the kitchen table. We do want that kind of passion in our lives. But, there is something else in this scene that truly makes this a women’s dream come true. What most women truly desire is not what Costner does, but what Sarandon does NOT do. As all of her dishes and the leftover food crash onto the floor Sarandon allows herself to be swept onto that table instead of diving for a broom, or a dish cloth or saying to her lover, “Hold on just a second, I’ll clean this up and then meet you in the bedroom.”

No, she is in the moment and desires this man and this sex more than she desires a clean floor or neat kitchen. She wants the rapture of this man and his body even with cereal and milk oozing under the fridge. And she is not saying, “Oh dear God that was my mother’s china bowl.” Nope, she’s on that table fucking her brains out.

Oh, to be that kind of woman. We assume the power is in the man, that to be taken that way would free us. But what we see in Bull Durham is a woman who CAN be taken. She is not a woman thinking, “When did we last wash these sheets?” while a man is dutifully going down on her.

Oh, we do wish for a partner to love us with such sweet abandon, but Sarandon, in Bull Durham, shows us a woman who can abandon herself.

Ordinary Time

In the Catholic Church liturgical calendar there is an acknowledgment of “ordinary Time”. This is the time between holidays and the time that is not Christmas or Easter or Good Friday or Advent.

It feels like that here in the land of love and cancer too. It’s not chemo or blood tests or attorneys. It’s not exhilaration or tragedy. This day and this week are filled with grocery shopping, golf lessons, parent’s night, and girl friends. I am picking up library books, allergy medicine, dry cleaning and avocados.

Having been in cancer land so much this year I have to stop and remind myself that this ordinary time is the real holiday, the true luxury, the blessing and the gift.

Colonoscopy

Yesterday it hit me. The nervousness I feel is because April is almost at an end and May is almost here. May has seemed far off until now. And May scares me because we both have colonoscopies in May. First John’s and then mine. I’m scared of them both. I run through scenarios: If his is bad do I go ahead with mine? If his is OK and I go for mine what if I’m not OK? If his is OK do I skip mine to give us a year of no trauma? If his is bad and then mine is bad too do we end up in hospice together? So much for one day at a time.

Golf Lesson

Yesterday I had a golf lesson with the course pro. A nice guy who hit that perfect middle between “guy’s guy” and “ladies man”. We broke down my swing into slow motion. I formed internal images of what I want and he gave me several swing exercises to practice. Exercises that give me feedback. I can hear and feel if I am doing it right. My body will learn and my head will follow.

Makes me wish for the same in new relationship skills. Bring the body and the mind will follow. Change your behavior and your thinking will align. Breakdown the new skill into baby steps and master each tiny change. One day I will simply swing and hit the ball high and far, and someday I will say, “No”, “Yes” or “Here is what will work best for me.”

Awkward Sex

Oh, and then there are those moments in a relationship when something happens and sex is awkward. Something doesn’t work or you want something the other can’t do or the other one wants something you’re not sure, or you both try a new trick and it bombs.

This is the turning point, the critical moment when you know whether you are a couple or not. Do you laugh? Yes, with each other not at. Do you cry? Maybe, both of you. Do you get mad, yes that happens too and the words come fast and hopefully not too many.

I talk to myself. And I talk to him. “This is us” I say. “This is our sex life not anyone else’s; we get to make the rules.” “This is us” he says. And we hold each other.

Baseball is Back

Baseball season is here and it adds another layer to our lives. We both love the game and are able to teach each other. He knows more about now and I know more about then. I love the history and he loves the Yankees. It’s a source of humor, anger, passion and of competition. It’s a source of metaphors too—many of them sexual --which makes it even more fun. Here’s to getting to third base and charging home with a scream and a cheer!

The All Nighter

Maybe we needed to clear the air. Maybe it’s the frustration of the legal, financial and medical all colliding like three cold fronts. Maybe it’s the dynamic of a relationship that needs a blow-out the way the earth needs a storm to clear and rebalance nature.
Last night was an all-nighter, the blow-out and the storm.

Today we woke to warm weather and partly cloudy changing to warm sun.
We are changed for good or ill. Painful things were said. Tender things were cried.
We said the unsaid and the unsayable.
We go on.

Girlfriends

The saving grace yesterday was girlfriends. The women with whom I can be completely honest and who I can safely show my scared heart and messy mind are treasures in my life. I talked to one friend on the phone and had dinner with another. We laughed at our fears and fantasies and helped each other to exaggerate the scenes but then also counseled each other off the ledge.

“We are only as sick as our secrets” we say in AA and a grief shared in halved while a joy shared is doubled. I saw that come true yesterday moaning, whining, laughing and saying, “…there’s one more thing…” and telling all.

How lucky am I to have friends like this?

Intuition

How do I tell the difference between intuition and fear? A lot of fears have arisen in me around John and his life. Is it my old fear? Projection? Hearing so much about people with cancer yesterday? Knowing that he is capable of telling lies? My own thought pattern of doubt? This is a crummy place to be and I want it to be different. The truth is that I want me to be different. I want peace for myself and peace in my own heart more than I want to be with him.

Trust

Last week I had this thought:
When someone has cheated on you it’s very hard to trust again.
But it’s also true that when someone has cheated with you it’s also hard to trust again.

But today I had this thought:
(and maybe Easter was part of my shift)
I don’t have to trust him; I only have to trust God.

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.