Whatever..

I’m thinking about how things get reduced to a symbol, shorthand ways that we communicate, and the funny ways that people think/talk about cancer.

The other day I heard a friend talking to another friend about one of her friends who has cancer and she said, “Yeah and she has cancer…you know, the bandana and whatever.”

Cancer, the bandana and whatever.

The trouble is, I knew exactly what she meant.

Learning to Fall

So much falling in this “love in the time of cancer” story: Falling in love, falling apart, falling down in grief, falling down in laughter.

Last week my friend Stephen recommended a book called “Learning to Fall” by Philip Simmons. I got the book from the library and within minutes I was scribbling in the book. That’s always my clue that it’s a book I need to own so I ordered a copy for me and copies for friends too.

Simmons was 35 years old when he was diagnosed with ALS (Lou Gehrig’s disease) in 1993. That disease causes falls so the metaphor became clear at once. But his most eloquent writing is about all the other kinds of falls we take when we face life head on.

This is one of those books that you’ll want to copy out pages to give to friends or pass out at work so just go buy a copy now.

Here is just a taste from page 8 speaking about life problems:

“And here is where we go wrong, for at its deepest level life is not a problem but a mystery…Problems are to be solved, true mysteries are not. At one time or another each of us confronts an experience so powerful, bewildering, joyous, or terrifying that all our efforts to see it as a “problem” are futile. …What does mystery ask of us? Only that we be in its presence, that we fully, consciously, hand ourselves over."

I like this idea of seeing challenges not as problems to be solved but as mysteries to  wonder at. It doesn’t make it easier, and Simmons is clear on that too.

I think this is like the difference between happiness and joy. Happiness depends on certain positive conditions but joy is ever possible even in the hardest, saddest most challenging times.

Fathers Day

Many layers of grief, worry and sadness on this day. Missing my Dad, coming to terms with who he was, and wrestling still with the leftovers of that relationship and how even today I see myself struggle with commitment, love and belief that I am loved. All of that has an impact on my life with John.

For John too. Missing his Dad, sadness over his kids anger at him, hoping they will get it that he had to leave their mother to save his own life. But they are kids—men really—but with our parents are we ever not still kids?

But I have another layer of fear and sadness on this day. I worry about cancer too and how it might colors father’s day in years to come. Yes, cancer. I do the countdown in my head. I know the stats and they haunt me. He is well, yes. Beat the odds? We hope so. My deep fear for his kids is that someday they will have regrets over having missed the last three years of John's life--out of pride or because they wanted to  make a point or they could not let go the grip of man-to-man testosterone-fueled “rightness”. I have anticipatory grief for them and I wish time to fly so they can catch up before it is too late.

Caught Off Guard

Ah, and I thought I was so prepared. That’s the trouble with mental rehearsal of troubles. They catch on to your head and then and sneak up from another direction.

Yesterday was oncology check up day. Four month interval with blood tests, looking for the tumor marker and the “Can you open your pants for me?” the belly exam that I so love to tease John about. It does seem that the most attractive PA’s and nurses ask, “Can I see your scars?” and he obliges like they were his etchings.

It was all good, Blood work OK and tummy-tapping just fine. But me: not!

I was a crazy woman all day. Grumbling about minor infractions and feared big events. My scared-girl head took me on a day long roller-coaster of “he doesn’t love me” and “they (any “they” will do) will upset the apple cart of our good life.” Just a day of fearful scenarios that ended—I’m ashamed to say with me saying nasty things and finally sobbing.

Oh duh, cancer got me again.

I guess all’s well that ends well and our day ended with left over pasta, a Yankee win and an early bedtime.

Progress not perfection.

Celebrate This Day!

Years ago I was a student at Marywood College in Scranton, Pennsylvania. It was then a small women’s school, today it’s a University. I went there as a ‘returning” student. I was “older” in my twenties and I devoured the curriculum. Yes, one of those sit in the front and ask for more assignment types who frustrated the other students but who delighted the faculty. I was hungry to learn. That never went away.

A memorable teacher and class: the nun, Sister Rosemarie, who taught “Marriage and Family” addressed our class frequently on one topic: enjoy this day. She told us that any time you had occasion to celebrate you should. She said—attention on the younger women I think—that there will be so many occasions for tears in your life that any occasion that is good deserves celebration.

That has stayed with me.

As we head into this week with worry over doctor's appointments and sadness for the death of a friend's baby and struggle with so many losses buried in gains of this relationship. I hear Sister Rosemarie saying, “Celebrate!”

Flashback

Today I drove to Hudson, New York for a business meeting. I followed the directions and pulled into the parking lot where the meeting was being held. It was an oncology center!

I signed in at the lobby desk and was directed to the conference center on the second floor. I passed through the clinic area and saw the patients and families waiting. Patients were being called in for blood work and to have their ports checked. It came flooding back.

The waiting rooms. Waiting to be called. Patients tired and anxious. Families with their reading bags and knitting and cell phones. The stress on their faces. Greeting each other with careful nods in that small community that a chemo waiting room becomes.

Why this Blog OR My Moon is in Cancer

I’ve been writing this blog for a while now. Some of you have joined us recently so here’s a hint of what the “Love in the Time of Cancer” conversation is about. At its core “LITTOC” is a relationship story and a love story. Like all good love stories we have a complication: Cancer. Stage three colon cancer and so instead of romantic dates and lunches and vacations we forged a bond over surgery and doctors offices and learning about chemo.

I am lover and caregiver, but I am also a writer and fierce about what is happening to John and to me and to us. I am writing this blog to tell my side of the story. I am not objective. I am not unbiased and at times I am not a very nice person. But then, cancer is not very nice either.

I am also writing this because I hope at least one person can have their sanity confirmed by this blog. Most of the official cancer resources have tried to be helpful but there have been so many gaps and so many platitudes and so very much condescension that I want to give cancer patients --and their lovers --another perspective.

I am also writing this because as Mark Twain said, “I don’t want to hear about the moon from a man who has not been there.” Loving a man with cancer is my moon. Take the next step with me.

(For more detail you can click on older entries from the menu on the right—go to July 2008 and join the story as it continues to unfold.)

All's Unfair in Love and Baseball

Did you watch baseball last night? Did you see the end of the almost perfect game? We changed channels to be there, to see the moment, to witness baseball history. What we saw instead was heartbreak but also baseball history.

Tiger’s pitcher Armando Galarraga threw a perfect 8 and 2/3 innings. On the last ball the hitter makes contact and runs but Galarraga takes the ball to first and tags him out. The whoops begin but are cut short by the almost instant safe call by umpire Jim Joyce.

Shock everywhere. TV viewers could see it was out but the umpire called safe. Game over. Perfect game squelched. I rolled on the floor in pain. Sympathy. Empathy. Seeing something taken away unfairly.

That’s the part we can all relate to. The unfairness of it all. Galarraga did everything he was supposed to do. He was supposed to be celebrating today. But he’s not. It was unfair. Love and baseball and life are unfair. Marriages should not end especially “perfect” marriages of 20 and 30 years where everything seemed, at least, to be perfect should not end. But they do.

People fall in love with the most unexpected others. People get hurt. There is no instant replay except at the watercolor and at the bar and the family reunion where it’s like a sports talk show when everyone can trash the ex. And kids get hurt too and they are really just innocent bystanders. It’s unfair. All of it. But that’s why we love baseball. Even when it hurts as bad as it did last night it’s still a great game and it is just life.

The C Word

Well, yes, there is that C-Word. The one that is awful and horrible and grounds for divorce—(unless it is said in bed in the absolutely right moment of passion, heat and disinhibition.)

And then there is the other C-Word: Cancer. The one we talk about here.

There is a new Showtime TV series premièring August 16th referring cleverly to both of those words.

“The C Word” will star Laura Linney (John Adams, The Truman Show) as a suburban Mom with Metastatic Melanoma.

“If someone told you that you had two years to live, how would you change your life?” is what “C Word” producer Jenny Bicks (Sex and the City)-- herself a cancer survivor—wants to ask viewers of this comedy series to consider.

Mary's Cancer

In a community meeting today a colleague named Mary told us that cancer has returned to her body. It’s the third recurrence. She had just come from her oncologist and was celebrating that she had found a great doctor, a woman, someone she liked and felt was easy to talk to. Three occurrences, three kinds of cancer in eight years. “I’m proof”, Mary joked, “that you don’t need all your organs.”

I heard her talk about her faith. Not in a pabulum, saccharine way but hard won faith. Won in Cancer Land. I could feel everyone in the room –me too--shift in their assessment of their own day. Bad bosses, too many bills and even minor mishaps in marriage pale at comparison with three kinds of cancer.

Mary knows that her story has that effect. “I tell my friends” she said, “hang out with me and your life will seem really, really good to you; you’ll be so much happier.”

And she’s right.

Laurel's Blog

Here is the link to my friend Laurel's blog--in real time--as she undergoes cancer treatment. She's a fabulous writer in her non-cancer life so she brings that gift to this adventure and she adds a bit of spice as well.

Read on:

http://www.caringbridge.org/visit/laurelsaville

Jealousy

Yes, jealousy. One of the most universal human emotions that we cannot speak about. It’s gross and miserable and beyond uncomfortable and it strikes us mute. We sputter and spit and stumble in trying to express it without sounding insane or weak and yet—and yet—jealousy is a powerful emotion which taps directly into our bodies.

I have stumbled through this territory all of my life, and perhaps that is the clue. It’s old. Jealousy is always old. I’d like to think it is about this man or that woman but at heart it never is.

It is also never this: Jealousy is never about love, it’s never about sex, it’s never about attractiveness even though those may be the cards we play in trying ever so hard to explain our predicament when trapped in jealousy’s swamp.

It’s also—and I am slowly coming to get this—never about him.

My recent tutor is French analyst Marcianne Blevis in her book “Jealousy: true stories of love’s favorite decoy.” She makes the powerful and iconoclastic case that jealousy exists to help us and to free us. Yes, I know it never feels anything like that, does it? She’s onto something though. (Yeah duh, she’s a French psychoanalyst and psychiatrist and brilliant so I’ll concede that she’s “onto something”).

But look at this thing she says: Jealousy is a response to anxiety. (jealousy is not the anxiety but a response to a preexisting anxiety) and she says the anxiety arose early in our lives: “If an impulse in childhood is struck down by a prohibition, it transforms itself into a terror and anguish” Ok, that makes sense I will be jealous of one whom I perceive to be the thing I was never allowed to be. But then she says this: “Jealousy not only tangles our memories, but also puts us in contact with those unconscious forces of childhood that are struggling to free themselves from the realm of the incommunicable.”

I did mention that she’s brilliant right?

Jealousy is not bad no matter how bad it feels. It is built in as a gift to save us. It is as if it is the antidote taped to the side of the poison bottle. It comes to free us from the thing that was prohibited, the thing we transformed into terror long before we had words.

Here’s a simple way to get at this in yourself: What were you not allowed to do that you did naturally and freely as a child? What did your mother or father prohibit? What were you shamed for? Was there something you did or liked to do for which affection or love was withdrawn?

Gail Sheehy Caregiving Book

I’m reading Gail Sheehy’s new book: Passages in Caregiving. It is very good. It may be the best book available on caregiving. It’s heavy on specific advice and true—brutally true—stories and very light on the platitudes. Nowhere in this book does she talk about putting on your own oxygen first. Bless you Gail Sheehy for knowing that the “oxygen in the plane” thing is a stupid metaphor. For most of us caregivers the plane has already crashed

Tony's Wisdom

My friend Tony died of lung cancer a year ago. He was a charming and witty guy and he had the gift of seeing quickly and deeply into people and situations. His comments could sting but he was the one to go to for an honest and helpful assessment of any situation. He continued to tell the truth when he had cancer.

Last week I ran into a mutual friend and we talked about how Tony lived and died with cancer. She told me that he said to her, “You can’t have cancer in the midst of an orgasm or a belly laugh.”

Joy

We are writing our wedding invitation. We each write a draft and compare notes. They are almost identical. We both used the word Joy. It is the perfect word and has been from the start. Not happiness, not peace. But it is Joy.

Home Wrecker

Thank you Oprah and Rielle Hunter for re-framing the feminist discussion: “Are women property?” Most people would say that women are not, but when we enter this discussion it turns out that men are.

Hence language like: home wrecker and a husband stealer. But notice that in these discussions—on the air and all the next day at the water cooler—it’s always the women getting bashed—and mostly by women.

Infidelity brings out the most anti-woman beliefs in the most feminist women. We blame a woman or both women in the social construction of infidelity.

The “other woman” is a thief, home wrecker and man stealer. On the other hand if we determine that she’s not the bad one then certainly the wife is because she didn’t “hold onto her man”. In either case the man is just a piece of valuable property to be kept, owned, held or stolen. Kind of like a check book with a penis.

Oprah for all her big talking and her embracing of the pseudo-psychological and the empowerment of women still misses the basic geometry: Infidelity is a triangle. Three human beings, equally flawed, equally trying, equally noble, equally victims, equally responsible.

Women Writing About Women

“If a woman writes about herself, she’s a narcissist. If a man does the same thing, he’s describing the human condition.”

That’s from Emily Gould in the May 3 New York Magazine. Gould’s new book, “And the Heart Says Whatever” will be published this week. Her statement hits home as I struggle to write about cancer and caregiving and love and sex –and work and clothes and money and fear and thinking and therapy and food and writing.

Is it one woman’s story and/or the human condition?

Home Again, Home Again

I’m home from Orlando. A week of conferences, teaching, sunshine and a hotel room all to myself. One million people visit Orlando every year. That’s what the taxi driver told me on my way to the airport yesterday. They come for Disney and the other attractions. But my vacation this week was totally inside the Florida Hotel and Conference Center. It was Goldilocks’ perfection: not too big, not too small, with a nice restaurant on premises and a great swimming pool. If you love to swim you’ll get this: most hotel pools are too short for real laps, you have to begin your turn after a few strokes but this hotel had a pool that was looooong so great, luxurious long laps with a real deep end so I could play mermaid and practice dives.

I loved having a week away. It was mostly work; I was teaching and speaking to a national caregivers group and I loved the people. But each day after the last session I was so happy to decline dinner invitations and have a swim and then dinner alone in the lobby and then go to my room to watch junk TV and read my book.

Home last night to John grinning at me from the airport gate. Then showing off my new tan--real and faux—for him and having a proper and wicked welcome home on the dining room floor.

It's Always There

I leave today for a week in Orlando for a Caregivers conference. Longest we have been apart since John’s surgery. I notice that my mind calculates time this way.

Yesterday in the car on our way to a concert we were listening to the Yankees game and there was a public service announcement for Colon Cancer screening. We both listened and didn’t speak. It’s always there.

We talk about the future. We talk about “when we are old” but cancer and its nasty statistics are always there. And I calculate. I plan for a wedding and a funeral. I dream of white and black. My contingency plan is always in place. Cancer is the hum in the background. It’s always there.

Colonel Chicken Cares about Your Breasts but not Your Life

More pink madness. More marketing fear.

Does the American Cancer Society care about heart disease? Does the Heart Association care about diabetes? Does Liver care about Lung? Does Chrohn’s and Colitis care about strokes? Does anyone care about all of you?

Our health care, health research and health education have become so fragmented because of marketing—and money—that it seems as if no one cares if you live or die they just want the organs they care about to survive. You can go ahead and die, they seem to say, as long as you don’t die of OUR disease.

A current ad campaign by Kentucky Fried Chicken is pitching a special promotion for fried chicken and The Susan B. Komen Foundation. You can now buy a big pink bucket (a bucket!) of fried chicken for the woman in your life and 50 cents from each big pink bucket of FRIED chicken will go to breast cancer research.

This makes me crazy! Does anyone want breast cancer? Nope. Do we want to prevent deaths from breast cancer? Yep. But this fried chicken campaign begs me to ask The Colonel—and Susan B. Komen: Do you really care about women’s lives and their health or only about breasts (both women and chicken)?

Here’s a fast bit of women’s health research: More women—more by far—die of heart disease than breast cancer. More women will die of cardiac related disease than breast or any other cancer. So if you really want to promote women’s health do you want to encourage us to eat buckets of FRIED chicken? (We know that you think we are babies—all that pink crap we have to endure, but you also think we’re stupid and can’t Google the words: breast cancer versus heart disease.)

What’s next? How about some pink Marlboro smokes? Pink Absolut vodka shots? A gallon of pink Hagen Das Ice cream and pink Wise potato chips consumed on a big pink couch in front of a pink TV?

Come on Susan B. Komen, get some balls—or are you leaving that to The Lance Armstrong Foundation? Will one of these health charities have the courage and integrity to care about the whole woman? To say to women—and the market-:A whole woman has boobs and brains and a heart and lungs and we need to take care of all of it for good health and a good life.