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.