The phlebotomy nurse, pulled down Joshua’s lower lids and peered into his eyes. I knew that she was looking for signs of jaundice and I also knew there was no hint of yellow. I’d already checked.
“It could be his hemaglobin levels.” She said. We were talking about why Josh has been so tired recently.
“Will he need a transfusion?”
“When she gets the results, Doctor will decide what to do.” She squeezed Joshua’s shoulder and kept her tone was soothing but it couldn’t take away my anxiety.
Back home Josh climbed into bed. Back into bed. The twenty-minute trip to have blood tests exhausted him. He slept for another four hours before getting up to go to the oncologist appointment.
The awful truth is that I chickened out this week. I almost always take Josh to his oncology appointments but this week I stayed home. I told everyone I was tired. I was still snotty from my cold. I needed to be here to let workmen in and out. Those excuses were true but not real. The reality was that I just couldn’t face the conversation to come.
Acute fatigue is a known side effect of Xeloda, the oral chemotherapy Joshua started in August. It’s also a symptom of low haemoglobin, which in turn could be a symptom of more bleeding in the stomach. Josh has also had flu, which can make you tired. Most disturbingly, acute fatigue – sleeping for most of the day – is the most common symptom of end stage cholangiocarcinoma.
Eight months ago, sitting in the worry room, a paediatric surgeon scrubbed at the tears on his cheeks and told us that, if there is was any silver lining to this dreadful disease it was that the end would swift. Joshua would, mostly likely, sleep through the end stages if his pain was managed well. At the time it felt like a small mercy.
Shannon and Josh went off to the oncologist and I sat in the bedroom. I stared at the bed where Josh has slept so very much in the last month: between sixteen and eighteen hours a day. I opened yet another game of Candy Crush, trying to still my imagination. I was too late, my mind had already leapt forward, past the staging, through the last days, to his funeral. Josh has requested a secular funeral, I thought, but I don’t know the running order for a funeral without the familiar hymns and prayers. I chewed at my nail beds, fussing over this trivial detail.
The phone interrupted my worry.
“I was a great appointment! Shannon has never trusted the car phone’s microphone. His voice was a controlled shout. “Probably the best appointment we’ve ever had. She said she was ecstatic with his bloodwork!” I couldn’t quite bring myself to believe his bubbling words.
“She did! She says tiredness is a symptom of the Xeloda but since he doesn’t have any of the others and because IT’S WORKING we need to stop worrying and let him sleep.”
“Really?” I could feel the familiar curling up of my chin and scrunching of my eyes but the tears came anyway. Tears of fear. Of relief. Of joy. Of not having to plan a funeral today.