December 4, 2010

I wonder if a month will ever go by where I do not complain about steroids? I feel for those of you who read this blog; you must be saying to yourself, “Enough about those stupid steroids, how bad could they really be?” That’s probably what I would say if this were someone else’s blog and I were reading it.

But, I write here about what I know and about our daily life and I would be ignoring the elephant in the room if I didn’t say, once again, how much I hate steroids.

I came out of the bedroom this morning to my early birds, John and Tanner. Tanner makes fun of my “morning face” – eyes scrunched up against the light, shuffling walk, scowl. She and John spring out of bed at the crack of dawn each day, chipper and ready to go. But, this morning, I came out and Tanner said nothing. She didn’t even look up when I said good morning. When I made a spot for myself in the nest of blankets on the sofa, she just crawled silently into my lap and cried a little. Steroids. They’re back.

She did rally mid-morning and wanted to go to Target. She and Jake got Target gift cards from “Uncle” Larry and wanted to go spend them. Tanner wanted to use hers to buy a doll for her best friend Corinne who, unlike Tanner, did not ask for an American Doll for Christmas. Tanner wanted Corinne to be able to play dolls with her and was prepared to spend the entire amount on a doll for Corinne. When we got there, the dolls were on sale and she was able to buy herself something, too. As Corinne’s mom said, “She was being rewarded for her generous heart.” She’s so excited about giving the doll to Corinne.

Before we left the store, Tanner started not feeling well again. When we got home, she started to get out of the car and screamed in pain. Her leg was hurting from the steroids or the Vincristine – hard to tell which. I carried her into the house while she cried and said over and over again, “It hurts, it hurts, it hurts.” I put her on the sofa and went to the car to get our purchases when I heard a loud scream from inside the house – the kind that says someone is really hurt. I ran in and found her curled up on the hardwood floor, screaming. She had tried to go to the bathroom and fell on the way. Damn. I want to hold her and tell her it will go away, but I would be lying. We have to take the steroids for two more days, so it will likely get worse. So, I scoop her up carefully and take her to bathroom so she doesn’t have to walk and then I get her a dose of painkiller and tell her I hope it will help.

She spent most of the day in her room in bed watching TV. She just didn’t feel good. And, she won’t feel good again tomorrow. I told her I would take her to see Princess and the Frog after we dropped Jake off at school and she said, “I don’t think I’ll feel like it.”

We will repeat this cycle every month for another year and eight months. She will know that the pain and exhaustion will come back. She asked me today if she could use the “H” word to talk about steroids. I told her to let ‘er rip. “I hate steroids,” she screamed.

Throughout the day I would hear her get up and make her way slowly down the hall to the bathroom, wincing, crying out when it hurt particularly badly to walk. I would climb the stairs and scoop her up silently and carry her down the hall and wait for her so I could carry her back. There really isn’t anything I can say to make it better.

Recently, she asked me why the doctors made a medicine that made her feel so bad. “Why would they make chemo if it makes me so sick?” she said. The only answer to that question doesn’t seem appropriate for a six-year-old, but unfortunately, none of this is appropriate for a six-year-old. I told her that a long time ago, before they had chemo, people died from leukemia, so when they discovered chemo and realized that it could “fix” leukemia, people were happy to take it. They were happy to know that they would live. So, even though it makes people feel bad to take it, we should be thankful there is chemo at all. I tried to avoid the obvious, but as usual, nothing gets by Tanner. She said, very matter of factly, “Taking chemo is better than dying.”

So, I will probably continue to gripe monthly about these damn steroids. “Better than dying” just shouldn’t be good enough. I want to be grateful to these drugs, but oh, it is hard these five days of the month.

I know she will feel better in a few days, but it’s still so painful to watch her hurt and know we signed her up for it. Know that I administer the pill that makes her so sick.

Love,
Beth