Saturday, February 28, 2009

The Cancer Card

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

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

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

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

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

Friday, February 27, 2009

Ring Thing

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

Wednesday, February 25, 2009

My Husband

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

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

Monday, February 23, 2009

Facing Fear

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

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

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

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

Sunday, February 22, 2009

Social Life

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

Saturday, February 21, 2009

The Dry Cleaning

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

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

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

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

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

Wednesday, February 18, 2009

After Making Love

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

After Making Love

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

Tuesday, February 17, 2009

Long Weekend

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

Saturday, February 14, 2009

Haircolor and Cancer

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

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

Would I stop coloring my hair?

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

Friday, February 13, 2009

Am I Loved?

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

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

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

I believe; God help my unbelief.

Thursday, February 12, 2009

What I Don't Want to Say

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

But I take my own medicine. Here goes:

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

Wednesday, February 11, 2009

Thornton Wilder

Thornton Wilder wrote:

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

Tuesday, February 10, 2009

The What If Game

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

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

Sunday, February 8, 2009

Risking the Complications

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

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

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

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

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

Saturday, February 7, 2009

We Have Cancer

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

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

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

Thursday, February 5, 2009

Why Can't I Be Sick

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

Wednesday, February 4, 2009

The Surgeon

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

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

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

Tuesday, February 3, 2009

Surgeon Today

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

Monday, February 2, 2009

We are Sick

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

Sunday, February 1, 2009

It's Not a Battle

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

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

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

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