My husband is dying. I watch his body thin and shrivel, his color turn gray. Thirty years of memories swirl and collapse. The pain of splitting one flesh is fresh and raw in my hand.
1962. We eye each other on the street in Boise, and in Joe's LB, a lounge, where we look across our dates at each other. One evening while I am eating Kraft Macaroni and Cheese, he calls. Four months later, we are married, and soon having babies, chasing corporate and personal dreams. Busy, always busy. Eventually and slowly, I learn he doesn't talk about feelings. I need to.
He is diagnosed with lymphoma in March, 1989.
February 10, 1990
Driving home from work, the winter sky is pink and blue, the trees black and sharply defined. The light quickly leaves; the scene changes continuously. I never quite witness the change. Streaks, the poets say, the sky is streaked, but that word has too many edges for this scene, the pink softer and falling away in the east, tones deepening in the west, blobs of color fading in and out without beginning or end.
Two or three deer graze on the hill opposite our home. Soon there will be fawns. We watch them in a telescope, on a trail animals may have been following for centuries, modified recently for fences and houses.
As I change clothes, the world turning dark, I think of the poet Charles Wright's words, "Darkness is only light that hasn't reached us yet."
Tom has started a fire.
February 11, 1990
Saturday. Tom pumps up the bicycle tires for me. I have the hills to work in any direction. My heart pounds and muscles scream. I need this physical challenge.
Signs of spring, small ones, pop everywhere. This is northern California. Twice I catch a smell of—what—is it too early for jasmine? Two seconds and it is gone, though I would like to keep it in my nose. Wild grass greens and a few wildflowers work up through the damp ground.
A couple of days ago, Tom met me for lunch and we noticed water in the creek near the gazebo. It is a good time for us. Our relationship, almost severed two years ago, is comfortable, kind, and loving. None of that comes easy.
"Love," my friend said, "is unconditional."
I have conditions. The cancer the doctor discovered a year ago has caused us to have a new perspective. He will probably not go back to work. He has little incentive to add money to an IRA account. There is today, and that is what we have to use, enjoy, or waste. Beyond that, our eyesight fails.
I work for the chamber of commerce and enjoy it. I don't take many domestic responsibilities. Tom cleans, washes, and shops. Outside of work I play the piano, read, and even write occasionally. That's what I want to do! Something always interferes. I had to go to work when I finished high school. While our two sons were growing up, I got two college degrees in English with the emphasis on creative writing. While Phil was in college, Tom quit his job and it was necessary for me to go to work.
I stop sometimes after work and have a drink with friends, like Tom use to do. I laugh easily and often. I cry easily, too. Sometimes I think of the "what ifs" but most of the time I'm too busy.
Unconditional. Not until now, do I stop trying to change him.
"I'm not going to nag you to death," I tell Tom. No use to say, why don't you quit smoking, eat more nutritiously, and exercise? He eats huge slabs of red meat, drinks whole milk, and loads desserts with butter.
If the roles were reversed, what would I do? Facing a life threatening disease would I give up the things I enjoy? Probably not.
We argue as vociferously as ever, but less cautiously, more outspoken, and then gone, as we share the fall of the Berlin Wall and the cat's idiosyncrasies.
January 12, 1991
Pressure at work.
When I get home from work the smell of smoke reaches me first—before hello.
I complain. He is considerate of other people, doesn't smoke in their house, car, office. Here, he smokes everywhere, in bed, incessantly in the radio room. He puts aerators in the room. It helps somewhat.
I hear about second hand smoke and move a little further away from his cigarette.
February 21, 1991
Our anniversary. Twenty-eight years. I give him a card.
"Oh, is this our anniversary?"
Nothing else is said.
A few days later, a friend says, "You must be looking around at other men."
"No...just for space."
Only certain things are possible in our relationship. The romance is gone. I feel angry. Was it a mistake to end our separation?
Because of the illness, we have gone to Europe during October the last two years, a good result. We don't put things off.
March 9, 1991
"He has many months of quality time," the doctor says when I ask him apart from Tom.
"Will he get to the place that he needs lots of care?"
"Yes. Three to five years. He is young and strong."
I don't have five years to set aside my desires and ambitions. I am not noble. I must find a way to care for both him and me.
I have reached my stride just as the road is closed. I am ready to go and the door is locked. I will find a way.
These words will save me. In the beginning was the word.
March 10, 1991
Before I have written a word, the one that will make a difference, he comes in the room twice. I shuffle quickly, not wanting him to see these words or enter my head.
The second time he brings the cat. She is skittish because of the visiting dog, which belongs to our son and daughter-in-law.
"Look what I have."
"I can't write with these interruptions. Please..."
He looks a little hurt, turns. I follow him out, pet the cat, try to explain myself.
March 16, 1991
I can't find the disk, where my other life is.
All week, I want to come back to this, but life interferes.
People want to help Tom. They tell us about a treatment place in San Diego but he would have to stop smoking, drinking, and eating meat. They say to hold a positive thought, to clear the mind and body of impurities, to laugh. Surely some combination of the right foods and attitudes will work. My mother sends a book about conquering cancer. We sign up for a wellness class.
He decides he will take the advice of his doctor and not change his habits.
We start the eight-week wellness sessions. He disguises his feelings. In high school, he was named the class clown. Here, he jokes, smiles, is kind and friendly.
Outside, he says, "I don't like it. I don't want to go back."
The book on conquering cancer—I read it. I ask him to read it, or read it with me. I put it on the coffee table, on his bed stand, in all the obvious places. He never opens it.
March 17, 1991
In the two years since his cancer was discovered, he has become less patient with people, centers on the negative in a situation, and if something doesn't interest him—he says so.
Always an enthusiastic sports fan—he use to have different ballgames playing in every room of the house—he has season tickets to St. Mary's basketball this year, but never picks them up or attends a game.
He prefers yard work, does certain things in the house routinely, but refuses to dust, so we have people come and clean the house twice a month.
A ham radio operator, he makes this a major part of his life. He was using an "old sugarbaker" radio, but last December when the medical news was not good, I said, "you might as well get what you want," so he did.
He talks to people all over the world. Some have become friends. Oshi from Japan has visited. We saw two "hams" in England. He has a local circle of guys who are hams.
Neither the transmission nor the antennae are pleasing to everyone. Sometimes the radio causes neighbors to have interference with their telephones or televisions. I stay out of it.
We converted our son's bedroom to a sort of hobby room, planning space for his radio and my computer. However, I can't write except alone, and the smell of tobacco permeates every fiber of what is now his room. I have a computer in the library. Much of the time, when I am home, we are in separate places.
Except when the kids come home, we rarely eat a meal at the table.
March 30, 1991
I get up about eight. He was up earlier, now is lying down.
"Have you been on the radio?"
"No. It seems like I've been tired for about two weeks," he says.
"I'll ice the cakes if you want me to."
Soon he goes back to bed.
I cry because I can't help him. He is looking at a discouraging future: feeling like this, a little better at times, but then, feeling worse. More treatment.
The mornings when he is feeling better, we get into big political debates. Today, it was an effort for him to speak.
A car pulls up in front. It is the woman bringing me papers from the junior high writing contest to grade. I told her she could put them in the mail slot. I hope she doesn't come to the door. My eyes are red and I don't want to talk.
I move away from the room at the front and stand behind the wall, not wanting to be seen. She drops the package in the mail and leaves.
Later, a friend brings over a videotaped segment of the "Today" show, about diphtheria fusion toxin. When treated with it, two lymphoma patients made excellent improvement, maybe even are cured. It is experimental.
Our youngest son is home. He's graduating in June from the University of Santa Barbara. We've made reservations to stay three nights. I hope Tom is feeling better by then.
I want to share my feelings with Phil, but I haven't. Not much. He doesn't ask. Sometimes I think he looks at me with fear that I will say too much, and inadvertently uncover some truth, which will lay us bare and unprotected.
I recall those heady times in the 60s and 70s when I thought everything could be cured by talking. The older I get, the grayer, not just my hair. The rules. The cures.
My son is absolute, unflinching about things. I remember when I was.
I want my son to understand my insights, to have my wisdom. We argue heatedly sometimes. I never argued with my parents. It wasn't allowed.
Last night, when I came home, Phil was reading, outstretched on the living room couch. He smiled a loving smile. I was happy.
Tom was approved for disability. The government sends him a check. He is eligible for Medicare within a year. That makes it possible for me to leave my job, something I've wanted to do for some time.
April 7, 1991
Last night, Osow, from Japan was here for dinner, along with Tony and Carrie. He smokes and so does Tom. Though the conversation was good, the smoke was not.
I've lived with the smoking since the day we met. It was part of the allure? Now when he smokes in bed, I turn away, cover my nose with the sheet. "My lungs are clean," he loves to boast. No direct link between smoking and lymphoma has been established.
I keep trying to put my life in order so I can write!
To some extent, Tom and I go our own ways. We have coffee together in the morning, sometimes argue politics. Most evenings, we watch the news together and then Jeopardy. Sometimes we go to bed at the same times, and rarely, the old attraction surfaces, the skin tingles, the impulses take over. More often, he goes to bed before I do and gets up while I sleep.
I fear for his getting worse. When the sweats occur, or he is very tired, I am sad. Another part of me wants it over. He must never see these words. He is a good, decent, honest man. Another part of me wants to move on. I dread watching a slow disintegration of his health. I don't want him to deny what is happening or accept it.
A writer for many years, Lois says that the journal, which she kept after her husband was diagnosed with lymphoma, (he lived for over 5 years) was helpful in dealing with his illness.