As part of Aria’s chemotherapy, she takes a steroid that completely changes her almost the moment it is ingested into her system. During the first phase of treatment she was on a very heavy dose for a month that not only changed how she looked but she became completely and utterly withdrawn. She takes a much lower dose now once a month but even then it affects her in the most interesting ways.
You may recall the noodle story and that is a typical example of her constant cravings and her incessant thoughts that ramble from her lips with a persistence that is sometimes challenging to reconcile. I’ve learned to finesse how to engage her and how to ignore her too. It would be so easy to cave to her every whim just to ease the tension and satisfy the craziness that these steroids cause, but it is my belief that this will not do her any good in the long run. It may satisfy the moment temporarily but it is imperative to remember that her behavior is temporary. The moment she stops her steroids, the severity of her behavior lessens and so to accommodate her to ease the tension for me isn’t a good idea.
I’ve also learned that trying to explain to her what’s happening and offer her rational perspectives isn’t always helpful either. Aria gets stuck. Plain and simple and no matter what I do, no matter how I try to offer reason to what is utterly unreasonable is of to little or no avail.
What I have found most helpful is clear, simple language with definite boundaries and consistency. No means no and yes means yes, for example. When Aria is on steroids, maybe is never an option. She just can’t handle it. It has to be black or white and the minute I waver on this she falters and life gets more challenging for us all. In some ways, this is the fundamental premise of good parenting in general. Children need and love structure, clear boundaries and consistency but throw in the mix some serious medication and it becomes that much more important. I won’t kid you, it requires an enormous amount of patience and I’m not always equal task. I often stumble. I make more mistakes than I care to admit but this, too, is part of the process. We are learning together and there is no other task more noble.
May 25, 2008
Subject: Aria on steroids
Let me begin by saying that Aria finished a week of steroid treatment last Friday May 23, 2008. Yes, the dreaded noodle steroids. The good news is that she only had to take them for a week and had last week off. She’ll begin another week long course this evening and then won’t have to take them again for a month. After that, she’ll take the steroids every month for 5 days, which is very manageable.
The steroids are such a wonder in terms of how they affect thought and behavior. Amazingly, she craved noodles in that short amount of time and there were hints of the obsessive thoughts and rapid speech but nothing compared to what we experienced during the initial part of her treatment way back when. The other nice difference was her ability to maintain a range of emotion as opposed to being completely withdrawn and depressed. She definitely had some manic-like moments, though, as well as some serious emotional rides that became really hard for me to deal with by the end of the week. All by themselves, they wouldn’t be a problem and in isolation they are funny but I tell you, when I was witness to her change in mood in a split second, it was shocking and disarming. When I was accused out of nowhere but time after time of not doing this right and doing that wrong and so on and so forth again and again and again throughout the day, my spirit was worn down. This is the challenge of the steroid treatment. The behavior is so different at times and so transparent but nevertheless exhausting and frazzling. I have learned that trying to reason with her is a sincere waste of time and breath. That may seem obvious but you wouldn’t believe how tempting it is to try and explain to her why her perspective is askew and why there’ s no reason to cry over me selecting the wrong blue cup. A blue cup is a blue cup isn’t it? It is easy to become sucked into the drama and forget what’s causing the drama in the first place. It isn’t that I ignore her either because that seems unfair. Her emotions are real and she can’t help herself. But I’ve learned that it doesn’t help her by me trying to convince her that she’s being irrational nor does it help me to continually engage her. Instead, I have learned to breathe deeply and listen carefully while keeping my reactions in check. It requires a great deal of patience and I’m afraid that I don’t always have what it takes.
Allow me to give you some specific examples. She started the steroids on Friday evening May 16th. The following Monday we were back in clinic for her 2 leg pokes. By the way, I neglected to mention that I saw the mother and her daughter and son I had mentioned in a previous email in clinic that morning. They had hoped to go home over the weekend but were not able to. Her daughter was in clinic checking her counts to see if they could go home then. Mom looked rested and had a smile to her. I don’t know if they were able to go home after all.
All morning long Aria was talking about McDonald’s. “Oh, Mom, I just love McDonalds. I love a cheeseburger and French fries and a root beer. Can I have McDonald’s? Please? Can I? I just love a cheeseburger, French fries and a root beer. Huh? Can I?” This was her tune starting about 7 am. I caved and told her after we finished with clinic we’d head to McDonald’s on our way home. She was thrilled but for hours afterward while we were clinic it was all she could talk about. She wasn’t hungry for anything but a cheeseburger, French fries and a root beer. We tried all kinds of persuasion but she was not going to be broken! “UGH! I’m so hungry for McDonalds. I just want my McDonalds. Are we done yet? Can’t we just go to McDonald’s?” In the back of my mind I’m thinking, “yeah right, sister, you’re gonna do what you always do, which is eat a bite or 2 of a cheeseburger, eat a handful of fries and take 2 sips of your root beer and then start complaining that your tummy feels yucky not because you’re full but because you just ate McDonalds! Gross!” I kept this thought to myself and tried to reassure her that we’d get to McDonalds when we were done. What I didn’t see coming was this.
On our way to McDonalds I had a chat with the kids to prepare them and plant the idea that I was not going to be buying Happy Meals with the toys. “Hey guys, I want to be perfectly clear about something. Before we head to McDonald’s, I want you to know that I will not be buying any toys today.” They acknowledged me and understood me or so I thought. I handed the kids their food and Aria was completely devastated that she didn’t have a toy. In tears and woeful sobs she says, “Mama, I really, really wanted to have a toy. You’re not being nice. I’m very disappointed ‘of’ you and I’m feeling mean with you.” Reo chimes in, “Yeah, we’re feeling mean with you right now Mama!” I wanted to say, “Guys, what’s the big deal about those stupid little toys that end up in the garbage anyway?” Then I remembered being a kid at our dentist’s office with a treasure chest filled with similar plastic crappity junk that I loved. I may have only played with it for that afternoon but for that time, it was the best toy in the world. I acknowledged their feelings by saying, “I know you guys are feeling angry and even a little sad. I know you are disappointed that you can’t have toys. It is hard, but we don’t always get what we want when we want it.” That’s my mantra and those poor kids are going to regurgitate and cringe whenever they find themselves hearing my voice in their heads saying it years later. Poor things. Still, I meant what I said and I was not going to be swayed. Naturally, by the third French fry they had moved on and the whole thing wasn’t even a dusty memory. Aria had eaten all of her food! I was stunned.
Tuesday morning came around and Aria was beginning to show some real steroid signs. The name of her steroid is decadron, but we call it ‘decadrama.’ Every morning it is the same routine. We are up anywhere between 5 30 and 6 30. Aria takes her medications with Doc most mornings and then comes downstairs to have a yogurt. This particular morning everything was moving along as usual with Aria sitting on the couch waiting for her yogurt while Doc was walking toward her gently shaking the container. She likes to lick the lid, getting every last drop of yogurt. So, he’s shaking the lid and all of sudden she begins to scream and cry as if she’s just stepped on a rusty nail or someone has jabbed a stick in her ear. I’m in the kitchen pouring myself a cup of coffee and have no idea what happened when I hear Aria say through sobs and wails, “Daddy, you did it wrong! You’re NOT SUPPOSED to open the lid while you’re walking! You’re supposed to sit down and open it!” “Ah-ha!, OH I see, was my first thought.” I walked into the living room and glanced at Doc who was taking a deep breath. I said, “Decadrama?” He replied, “Oh yeah!” Aria would not be consoled and fortunately the week was still young and I had all kinds of energy and patience. To her mind, her yogurt was completely and utterly contaminated so I offered to get her a new one and give the ‘wrong’ one to Rianna. Choking back her tears, she agreed. Like a switch, when I handed her the ‘right’ yogurt, she beamed and asked, “Hey Mom, you wanna know something interesting? You remember how on Monday we had McDonald’s and it wasn’t even a Friday? But I still had to go to clinic even though it was Monday and not Friday. Isn’t it interesting that I asked you if you had money for McDonald’s and you said that you did and I said yeah!! I just love cheeseburgers, French fries and a coke. Isn’t that interesting?”
It was 6 45am and this is how the day began. After she ate her yogurt she began repeating her ‘interesting’ story over and over all the while she was pacing in front me. This is the manic type behavior we saw in her. She was talking a mile a minute trying to catch her breath while staying on top of her thoughts. At the same time, her body was in constant motion. There was a rhythm to her movement; a 3 step pace back and forth with her hands tapping the couch. She wasn’t spastic, her speech wasn’t garbled and her thoughts were focused even though they were repetitive.
“Hey, mom. It is so interesting that you took me to McDonalds on Monday and not Friday. You know that my favorite food is junk. I just love a cheeseburger, French fries and a coke (yesterday it was rootbeer). I love that and it was so interesting that on Monday I ate it.” She’s saying this in a sort of sing-songy way.
“Aria, we are not going to McDonalds today,” I tell her gently.
“I know Mom! I’m just saying that it is interesting.” She says exasperated and defeated.
“Aria, that is interesting. But do you think eating junk is going to help your sissles?” I ask.
“I know Mom! I just love junk.” She begins to pout and her arms are crossed. All of sudden she screams and she’s crying. “Mama, YOU HURT MY FEELINGS!” She’s sobbing and I’m certain she feels as if she’s being punished. I tell her we need to talk about it. I pick her up and hold her while we sit on the couch. Rianna, meanwhile, senses the sadness and begins to cry also. She throws herself on the floor tantrum style. I scoop her up and the 3 of us sway side to side while I take deliberate breaths. Aria sits up all of a sudden and with my face between her hands says, “Mom, I have a secret. Rootbeer and junk is my favorite.” I sigh and tell her, “Aria, I’m all done talking about this right now.” I go to move her and she begins to cry again claiming, “Rianna just bonked my elbow!”
I put them both down and go to pour myself another cup of coffee. It is just before 8am on Tuesday and it feels heavy. Aria enters the kitchen sulking quietly telling me that she is still hungry. I ask her if she wants some peanut butter. “Oh Yeah! Peanut butter! I love peanut butter. Peanut butter. Peanut butter. Peanut butter. In a blue bowl please! Peanut butter. Peanut butter. Peanut butter. Yum!” I scoop a dollop of peanut butter into a bowl and we head upstairs to watch playhouse Disney. She’s thrilled and the whole McDonalds thing is finally silenced.
I decided to come downstairs with Rianna and sit at the computer and write for a little while. I had a few thoughts that I wanted to put down. Writing has become a little more challenging because we are playing outside a lot more often so my time to sit with any kind of focus is somewhat limited. Rianna was settled on my lap nursing and beginning to doze and I was thinking about ‘feeling overwhelmed.’ I was looking around the farm, noticing how much weeding needed to get done and feeling like I wasn’t able to tackle much of anything. I’ve said before that it would be nice to be able to feel like I was taking a bite out of something instead of always nibbling here and there. I was imagi “HEY MOM!!!” My heart came to a sudden stop with this cry of desperation coming from upstairs. “Aria! Are you ok?” I asked as I’m walking with the baby to the foot of the stairs. “Yeah” she says calmly. “I’m a piggy-piggy and need more peanut butter.” “Great!” I say, and walk with Rianna still asleep up 2 flights of stairs to retrieve Aria’s bowl to get her some more peanut butter. Rianna and I walk downstairs, put another dollop in the blue bowl and head back up. I decide to keep Rianna in my arms instead of putting her in crib because I knew the moment I’d lay her down, she’d wake up and any chance of napping again would have flown out the window. As Aria is reaching for her bowl of peanut butter she says in a sweet cheerful baby-like voice, “Thank you, Mama.” “You’re welcome my darling.” I tell her. I begin to turn when I hear her shout, “OH NO! YOU DID IT ALL WRONG! MAMA, THIS PEANUT BUTTER IS ON THE SIDE NOT IN THE MIDDLE! IT IS WRONG WRONG WRONG!” My eyelids blink rapidly as if I’m in the middle of some freaky dust storm. I pause a moment trying to wrap my head around her perception. My mind says very slowly, “The peanut butter is on the side of the bowl and not in the middle and this is wrong, oh so very wrong.” I’m exasperated but patient. I’m actually a little surprised by my patience because my creativity has been dulled by the incessant run on repetitive thoughts of Aria. “Aria,” I say calmly but firmly, “peanut butter is peanut butter whether it is in the middle of a bowl or on the side. You either eat it or you don’t.” The ‘don’t’ snapped in the air and seemed to startle her enough to refocus her thoughts. I turned and walked away and as I looked over my shoulder she was merrily eating her peanut butter.
I came back downstairs to re-read what I had written in order to jog my memory and continue my train of thought. I was considering the idea of feeling overwhelmed and how that comes to be and more importantly how to lessen its pre “HEY MAMA!” “Crickey! Can I not finish a freaking thought over here?” I’m pissed and feeling totally sorry for myself. As I stomp toward the stairs realizing that I’m about to lose my cool I yell at not quite the top of my lungs but pretty darn close, “WHAT? WHAT ARIA? WHAT?” I’d done it. I’d gone over board. I was being ridiculous reacting to the steroid driven emotions of a 4 year old. I could hear her mumbling something. I went upstairs still holding Rianna, who is by now wide awake. I’m stomping up the stairs fuming. I know full well that my behavior is negative and absurd but I am not allowing myself to calm down. I am only engaged in this nasty bit of behavior wanting nothing more than to blame Aria for my reactions. By the time I reach the playroom, she is crying quietly, “Mama, you ‘hurted’ my feelings!” I went to her and sat beside her. I put Rianna down and gently lifted Aria into my arms. By this time, I was completely calm and I said to her, “Aria, I am so sorry I hurt your feelings. I should not have used such a nasty tone. I was feeling frustrated and I’m sorry.” She looked at me and, you guessed it, she said, “I just love a cheeseburger, French fries and a coke! It is so interesting that I love junk and I do! I do. I do. I do. I love junk!”
I just shook my head and smiled. I never did go back to the computer and God knows what I was going to say about feeling overwhelmed and how to lessen its presence. Those ideas are long gone by now! ~j
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