This is the sixth of thirty-one installments of Donna’s Cancer Story, which will appear daily in serial format through the month of September to recognize Childhood Cancer Awareness Month. Each post will cover one month of Donna’s thirty-one months of treatment.
Remember that blessed routine I waxed poetic about just yesterday? Yeah, things felt a little less blessed this month. Not catastrophic, mind you, just hard and wearing and sad. After a few rounds of chemo under Donna’s belt, I was aching to get away during one of her healthy weeks. We had good friends with a beautiful loft in Michigan, just a short walk from the beach, who offered their home for us to rest. It was a Godsend. I counted down the days of Donna’s cycle, knowing that soon we would be capitalizing on her week of health in Harbor Country. All things seemed possible and life was looking up. Until Mary Tyler Dad got sick. The night before our departure.
After an evening of overindulgence (cheese, not alcohol), Mary Tyler Dad didn’t feel so well. He was sick as a dog and I was mad as a hen. Seriously, it was not my finest marital moment. There he was, tossing his blue cheese burger, repeatedly, and I was pacing and incensed. How could he?, I remember thinking. My picture perfect family getaway where we were going to ignore cancer for five whole days was being usurped not by chemo or neutropenia or cancer, but by blue cheese! It was one of the few fights we had about Donna’s cancer. I’m still not proud of myself.
Cheese aside, we made it, though delayed a day or so. It was everything we hoped for. Donna loved the space and made herself right at home. She didn’t like the beach so much, or the wind, or the water, but, you know, it was a suspension of our reality, so we were all buzzed with just being away.
We came home to more of the same. The grind of chemo started weighing more heavily on our girl. Her hair thinned, her eyes grew sunken. As her appetite came and went, her weight just went. For the three weeks not spent in health, her favorite place to be was in my arms. So that’s where she spent most of her days. She would say, “Mama, let’s rock and roll,” which was how she asked to be held in the rocking chair in her bedroom. We also called it, “loving,” as in, “Donna, do you need some loving?”
We spent hours together at home, with Mary Tyler Dad at the office, just Donna and me, rocking and rolling. The downstairs sofa bears permanent imprints of my cheeks. Donna watched hours of Caillou on the good days, impassively, she on my lap, a blanket over both of us. On the bad days, the days a week or so post chemo when her body was grappling with the loss of its immune system and the medicine we injected each night into her port to stimulate her bone marrow, GCSF, caused significant bone and joint pain, we were more likely upstairs on the kitchen floor. To this day I don’t understand it, but that is where Donna wanted to be held. Sometimes I would sit on the floor and she would rest her head in my lap. I wrote at the time, “She wants to be in our arms in her misery.” It was so very sad to not be able to make the pain go away. The most I could do was keep her company there, in her misery, and assure her she was not alone.
Eating and drinking would be measured in bites and sips for days and then, like a switch had been turned, Donna would devour amazing quantities of food. Plates of tortellini and gallons of milk. She would be voracious. And then, flip, the switch turned again and we were back to bites and sips. And as Donna’s mood went, so did ours. On the good days the sun shone brighter, the grass was greener, the flowers never lovelier. On the bad days, well . . .
Seeing Donna suffer and physically diminish lead to some pretty dark thoughts, too. We both tried, Mary Tyler Dad and I, to, if not make sense of what was happening, at least try and make peace with the possibilities of what could happen. We worried about the chemo not working at some point. Or we worried about what came after the chemo. Those thoughts were there always, especially after Donna went to bed at night. One night I wrote in our caringbridge journal, “Even if Donna’s life is abbreviated, she has woken up each and every morning to love and comfort and arms wanting to hold her and lips wanting to kiss her. Not all of us are that lucky in this world.” And those words were true, but still, the thought of her death was unbearable, but close.
In this photo, Donna is wearing her robot pajamas. She loved them so. I put Mary Tyler Son to bed tonight wearing them. He loves them, too. They brightened her night to put them on. When I bought them, I cried. When you have a child with cancer, you never know how to plan ahead. I always bought Donna’s clothes off season. At the end of winter, I would stock up for things she would wear the following winter. That stopped cold when the cancer was diagnosed. Anyway. When paying for the robot pajamas at the Old Navy I had an especially chatty cashier. He was pushing sales, too, and kept encouraging me to buy more than the two pair I had put on the counter. I politely told him two was enough. “But they’re on sale,” he said, helpfully, “Get the next size up!” Cue tears here. I couldn’t stop crying when he said that. The poor guy didn’t know what to do with me.