She rubs the underside of her fingers across the top of her hand. Her hands are in constant motion. They move nervously around themselves, tapping and scratching, grasping it seems for comforting reassurance. Her eyes are drawn off and focused elsewhere in the room. She is unaware of her fidgeting fingers.
Her nervous energy transfers to a quest for food. She plunders the pantry and browses the contents of the refrigerator. Nothing satisfies her taste, so she shuffles around the kitchen with her animated hands and heavy sighs. I ask if I can fix her breakfast, but she is uncertain. She craves tea. I brew her a cup. While we wait for it to steep, she blurts the ghost of her anxiety.
– I don’t want to go to chemo
I tell her I understand. I remind her that it is not for very much longer. I rest my hand on her hands and they settle for a moment. She doesn’t look me in the eyes. Instead, she furrows her brow and begins to whine.
– My tummy hurts just thinking about it. I don’t want to think about it. It hurts so bad.
I comfort her with the best words I can, careful not to over-promise. She calms herself and sips her tea. Then she excuses herself from the table and trudges to her room to prepare for the trip to the hospital.
The chemo ritual has never been easy for Jordan. It occasionally makes her sick. It requires a lot of time sitting, lying down, and waiting. And it requires a poke from a needle. We’ve grown accustomed to counseling her on all of these fronts. Until recently, the needle caused the highest amount of conflict. But recently, chemo conjures new anxiety from Jordan. Irinotecan, the drug she’s been taking for nearly six months, causes significant stomach cramping. The effects are felt just minutes after it is administered. Jordan doubles over in pain and often needs to lie down to let the pain subside. She’s experienced this pain enough that now she anticipates it long before going to the hospital. To make matters worse, once she gets there and is accessed to the IV, she has to wait for another hour as they flush her system with fluids. Every minute the IV drips she wrings her hands and worries about what’s coming next. She knows the next bag of fluid will start the treatment and the thoughts that race through her mind trigger sudden outbursts and restless behavior.
– I want this off. If I had scissors I would cut this cord right now!
Jeanette calms her. She rests for a few minutes, then allows the anxiety rush again.
– Call the doctor, now! I want this thing off. I don’t want to do this today.
Sometimes she barks these orders at anyone who’s close. Nurses are told to find the doctor or they are threatened. Sometimes she cries a little. Jeanette holds her and tries to divert her attention.
Then, the drip begins. Jordan takes it well. She tries to think about other things, but the pain inevitably comes. She musters stoicism and within an hour it is done. She feels miserable for the rest of the day, and her discomfort finds easy targets – like her brother. Though he doesn’t like the nagging and the pestering, he often holds back more than he usually would. He says nothing about it, but I think he knows she needs a venting target.
By the next day, she feels better. Usually, she misses school and rests. Her digestive system fades in and out of function for the first few days out of chemo. She has accidents. When she does, she gets angry. She feels humiliated and has trouble tolerating her non-compliant body.
Last night, as Jeanette and I turned in for bed, Jordan burst into the room.
– I threw up!
She is upset. The emotion is directed at the after-effect. She didn’t make it to the bathroom in time and she soiled the bottoms of her favorite pajamas. Jeanette walked her to the bathroom. I could hear them from down the hall. The conversation is surreal. Jordan complains about wanting to wash the pajama bottoms tonight, but her sentence is interrupted by insubordinate interjections of vomit. She tries to keep talking as she empties her stomach. Jeanette has to tell her to wait and stop trying to talk. When she is done, I hear her tell her mother how “disgusting” she feels. She cries a little when Jeanette tells her it will take time for the pajamas to wash. But eventually, she settles for another pair and both girls return to bed.
Jordan’s relationship with cancer has changed. It annoys her. It’s inconvenient. More than ever before, she treats it as a terrible nuisance that gets in the way. And, she dreads the steps it takes to make the nuisance go away. Her mind is preoccupied with the side effects. She has grown-up anxieties and she’s fatigued by them. There’s little one can say to quell these anxieties. The best we can do is acknowledge them. The best we can do is apologize and show signs of true empathy while we watch from the sideline and pray some of the suffering could transfer from her to us. The best we can do is love her. And that we do while wishing through tightened lips that we could do more.