A husband and wife's diary of living with terminal cancer

"Monotony is the law of nature. Look at the monotonous manner in which the sun rises. The monotony of necessary occupation is exhilarating and life-giving."
--Mohandas Gandhi

Losing things and getting lost are my personal responses to chaos. In the month after Gil's diagnosis I lost two sets of keys and two of our one-year-old's hats, and I left my wallet to be stolen from the driver's seat of our car while I put gas in the tank (which was empty because I'd been driving around lost).

Maybe I was working to prove that I couldn't be trusted in a crisis. Or that I could live without anything, since what I treasure most was now threatened. In any case I had new keys made, bought a new wallet, and instituted a daily schedule more rigorous than the one Gil and I already had. My task was simply to prevent the loss of more keys, more credit cards, more hats. But in the process I also hoped to prevent the loss of mind and faith.

The simple routines of our household have come to embody our staunchest faith in life continuing. To get up in the morning with our daughter, to start the blender and the tea kettle, to play "where's Mona?" under the table while we get her cereal and bananas are the greatest acts of faith we can exert some days. When a day ends well, when we have provided bath, breast or bottle, and bed for Mona, a home-cooked dinner for ourselves, and when afterward we load the dishwasher, throw diapers in the wash, fill the cats' bowls, turn out the lights, and climb into bed together, we thank God and welcome our well-earned rest. Knowing we know nothing, every ordinary day is an absolute revelation. In the morning we carry out our routine, and our routine carries us.

Habit renders the gentle changes in our life wondrous and plush, like the unfolding of Mona's abilities and possibilities. Every morning since she was four months old, we have put on music for her, Woody Guthrie's "Grow Big Songs" or Taj Mahal's "Señor Blues." One morning her eyes lit up--she recognized the songs. Later on she danced. Just last week I was alone with her, still in my post-dawn stupor, reading aloud to pass the time (she rarely pays attention). Half-conscious, I turned a page and read the word "dance." Something in the room changed, subtly but unmistakably: I looked up and she was dancing.

Rude change is what threatens to undo us. One day Gil took the baby for an entire afternoon and returned home flushed and delighted. The next day his face was ashen and he complained of a weariness beyond expectation. Within days he was getting a blood transfusion, staying overnight at the hospital. The same friends who babysat for us only a week before on our wedding anniversary came back again to stay with Mona so I could be with Gil in his cramped hospital room. By the next day he was home and almost fine again.

What saves us, unexpectedly, is Mona's routine. Especially on the really desolate days, the routine lulls me, allows me to see clear to the next day, and the next. It frees my mind, lets me think and pray. I'd forgotten how to pray until this happened. Now I pray as if it's always been second nature, from the moment I pull myself out of bed each morning to the moment when Gil and I fall into bed at 11, into a sleep at once so ordinary and so transfigured: here we are again, thank God, in our quiet house. I pray for strength, I pray in gratitude, I pray for wisdom, I pray for patience, and when I allow myself, I pray for a miracle.

The soul has its routines, too. As often as I can, I go to the Sukyo Mahikari dojo to pray at the Buddhist altar and "receive light" from a volunteer--a gentle laying on of hands that works subtle wonders. I trek to a yoga center twice a week and practice seven to 15 minutes each night after the baby goes to bed, with the hum of the dishwasher as my raga.

And I notice that I am finding things again: the simplest of the Jewish prayers and songs, the first ones taught to children. Sh'ma Yisrael Adonai Eloheynu, Adonai echod. "Hear oh Israel, the Lord is God, the Lord is One." And, Hinei ma tov u menayim, sheve tachim gam yachad. "How blessed and pleasing it is to sit down as brethren," a song for peace that is Mona's lullaby now. I sometimes have to ask a family member or friend to help me decipher the English I should already know. But it's the Hebrew that keeps coming back to me, its rough music worn soft from years and days of millions of voices singing, these syllables stored away for 30 years now but never lost, returning to my hand like a set of keys I need so badly and just misplaced.

Gil Schamess was diagnosed with liver cancer in the summer of 1999. By the time it was found, the cancer had already metastasized to his lungs. Although the cancer is considered incurable once it is metastatic, treatment is available, and one regimen of chemotherapy has helped a number of patients survive for nearly five years. With his wife, Lisa Wormser, who shares this column, Schamess is continuing to raise his young daughter, born in December 1998, and to build the life he wants and believes in.

Schamess and Wormser will write regularly about the struggle to heal and to accommodate the disease that has entered their life.

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