Another blessed, ordinary day. The upstairs feels so clean and happy now that we finally cleared out the long middle room and fixed it up for Mona's playroom and (eventually) for watching TV and videos together. I get a glimpse of that room as I come out of Mona's after bedtime: the plain white couch, the shelves full of stuffed animals, the red metal scooter from the '40's and the plastic popper bubble Lois and Bob just gave us. Gil remarked the other day on the total sensuality of toys when you're so small--their colors and shapes are so absorbing.
Gil's most recent CT scan showed relatively stable disease. Dr. H wants to meet with us to talk about progress to date. Gil seems to have good, normal energy for him. The most annoying things of late are a diarrhea that comes and goes, a swelling of his abdomen that never quite goes down, and now a sudden acute pain in his hip that won't let him put weight on one leg. He looks like he's been through a lot, but he is still standing, God bless him.
Steffi and Gerry, Gil's parents, are staying here for the duration, at my brother-in-law Andrew's house six blocks away. Since Gerry is allergic, Rebecca, Andrew's girlfriend (and our best friend for three years before they met), has taken Andrew's cats. Our cats are still here - which means Gerry can only be at our house for short visits, but he and Steffi faithfully come, running errands or taking Mona for long outings. Once a month he goes back to Northampton to see patients and check in where he teaches. Cancer is slowly displacing all our lives.
We thought the CT scan was good news. It wasn't. Dr. H says it's time to stop the chemo and try something else. As it happens, this was one appointment Gil went to alone because we didn't anticipate bad news. I let him down. I wasn't there.
On a night like this not too long ago, we lay listening to Mona wail for us. We'd been up and down with her all night. We--and she--were exhausted and out of patience. Gil and I began simply to talk, as calmly as we could, to ignore our own child's crying. Not ignore it--outlast it, transcend it, remember that beyond this night was morning, and that sunny face glad to see us.
"Maybe this is what God feels like," I said, not as tentatively or as humbly as I intended.
"I mean, when you're a parent you learn how much patience it takes just to be there consistently, and you also learn sometimes you can't or won't be there. Maybe God can't either."
Listening to Mona, I thought how awful for God, to see some creatures doing well and some not so, to hear all of us waking up to our aloneness and crying out. How overwhelming. How loud and terrible. Maybe God gets tired too, and some nights just can't come in to soothe us one more time.
At first Gil's hip got a lot better if he moved it around for awhile, then it got better with a massage before bed. Now it's virtually impossible for him to pick up Mona and carry her the way he did. Plus he needs his sleep more and more. So it's me in the middle of the night and it's me in the morning.
Read the next installment of "A Diary of Living with Cancer," Falling Off the Cliff, or choose another column here: