Anne Lamott wrote a writing book called “Bird by Bird: Some Instructions on Writing and Life.” My good friend, Lynn, gave me this book. In my mind it seems she gave it to me when I was lost in illness.
It was that first year of Wegener’s Granulomatosis. We were living with my brother, while I was going to inpatient treatment for my cytoxan infusions. One week before my first Las Vegas infusion, I went to Quest Diagnostic to have my labs drawn. They wanted to see if my white blood cells were “normal.” If they were too high or too low, I might not be able to have the infusion. It was a scary situation because I would not wish this treatment on an enemy. However, without the treatment, I would die. It was that simple. So I endured the treatment. I endured having my blood taken out of my veins.
When I had my first infusion in Germany, I cried. In Germany, when you are in the hospital, you are not given a choice of treatment like you do in the U.S. The doctor walked into my room. I was lying on a hospital bed: it was like any bed you would see in any hospital around the world. She asked me if I was ready for the infusion.
“What is it?” I asked. I was lethargic. Each day I became weaker and weaker.
“Cychlophosphamide.” She said. She prepared the I.V. that had been threaded through a vein in my elbow. She cleaned it and connected it to the I.V. bag.
“What is it?” I repeated.
The doctor looked at me. “They didn’t inform you of the side-effects?”
I shook my head no. You see I was in a German hospital. I had some basic German conversational skills, but the nurses didn’t like to explain medical terminology to me. They knew that it would be a long hard road and in the end I would probably misunderstand. At least the doctors had to speak English.
So the doctor sighed, and began the list of side-effects. All I heard was that I would lose my fertility. I know. I know. I never wanted children. I was the oldest of nine. My parents had trained me to be the housekeeper and nanny. I even had a stint as a schoolteacher when they pulled us out of school. I could never understand why one of my brothers, even when I spent hours and hours helping him, that he still couldn’t read. I learned the answer just a few years ago. He is dyslexic. But, I was punished for my inability to teach him.
But, when I heard that I could never have children and that the choice had been taken from me, I felt a huge hand squeeze my heart. I would never have children.
The doctor watched me, my eyes brighter from the gleam of tears. “You refuse treatment?” she asked me. “I can give you a few minutes to decide.”
“No,” I said. “I don’t refuse treatment.”
The tears welled, but I held them back during the infusion which lasted almost four hours. I held them back until the doctor, who was monitoring my progress, unhooked the infusion equipment–then I mourned.