Day 502

day 502

When I’m tired, fear is harder to fight. I know this is true tonight.

The boys both had great days at school. Benjamin had a field trip to our local YMCA for a group swimming lesson. This is something I would have been petrified of a year ago; today, I easily decided that the benefit outweighed the risk. And Banyan is really pulling it out strong here at the end of the schoolyear. We all have summer on the horizon.

When I picked Benjamin up, he was super hungry and quick-tempered. More than six months into maintenance, and it still takes me by surprise when the effects of his steroid pulses intensify during the week after he takes them. If the week of steroids is mild, I expect to be in the clear by the week after–but this is not always the case. I should know better by now. The intensity continued at dinner. Benji requested “New Mom Soup,” his favorite (so named because it’s our go-to meal to bring a family with a new baby). He had two helpings. He put his empty bowl in the sink and said to me, sarcastically, “Thanks for the light dinner,” indicating that it wasn’t filling enough. And again at bedtime, when I went to leave after tucking him in instead of staying until he fell asleep, Benjamin said, “Not my loss.” Ouch.

Michael is a wonderful partner and encourages me to remember the circumstances when Benjamin says hurtful things. And Benjamin always, always apologizes, usually with tears and words that indicate that he did not at all mean what he said. Steroids are hateful little pills. I’m grateful for the lysis they induce. But man, they are nasty. I know they are doing the talking. My boy would never speak to me that way. Right?

My fears today centered mostly around infection. Am I doing enough?  Benjamin’s toe that we’ve been keeping an eye on still hasn’t healed completely. We clean it with peroxide and apply antibiotic ointment every night, a regimen endorsed by our oncologists. But I worry. His ANC at last count was over the neutropenic parameter, but I really have no idea what it is right now. This is the reality of maintenance. The toe is showing all the signs of healing I want to see, which is reassuring. I know his neutrophils are working to protect him, I can see them in action. Still, Michael and I decided tonight that I will call the clinic tomorrow. One more discussion about preventative antibiotics–something I always resisted in my children, until leukemia–will set my mind at ease.

Tonight I worked on the rainbow star project for a little while to clear my head. A local school delivered just enough stars yesterday to eradicate my wait list. I am laminating and cutting them tonight. I know the stories of the people who are receiving these stars. I know that infection and illness and relapse are not part of Benjamin’s story. I can deal with a few snide comments derived from steroid use. Because what else is derived from steroid use? Achy muscles. Sore bones. Intense hunger. A body that can barely climb up into bed at night, from fatigue he can’t even describe.

I can take it. I forgive you. Bring it on.

One thought on “Day 502

  1. I feel so sorry for Benjamin going through this steroid personality. I’ve been there. Just a couple of weeks ago my doctor lowered my dose. Well it sent me off the deep end. I was nasty and sarcastic to my loved ones. Made my granddaughter cry. All the while I kept telling myself to stop it, but I couldn’t. I have since evened out and apologized to everyone. How much harder it must be for a child to deal with this. Love to him and all of you. Sometimes we patients can be a little hard on our caregivers.

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