Monday, June 1, 2009

Aria's habits

I know I’m repeating myself when mentioning the effects of steroids. It cannot, however, be emphasized enough just how profound the changes were and how deeply effected we all were by them.

Giving Aria steroid treatment is something we have to do to this day as part of her chemotherapy. We accept this as it fits in the entire package of treating her cancer. What is so hard to accept, however, even now, is that she has cancer. You may be reading that thinking, “Really, even after a year of dealing with it you’re still having a hard time accepting it?” I would answer an honest and hearty, “Yes.”

On one level I feel defensive and want to say, “Of course I accept that she has cancer. It is what it is and we’ll do whatever is necessary for her!” On another level however, it isn’t that I don’t accept the reality of it, I’m simply still shocked by it. I can’t believe it. Still! It makes me wonder about death, for example, and the initial shock that happens followed by years of what I think would be like shock waves. Moments of heart-wrenching grief and sorrow that sometimes appear out of nowhere making one fall to their knees in sorrow and longing for the deceased. I suppose any tragic event could elicit these shock wave type moments. The steroid treatment is shock wave that I face with Aria every month. It is one of a myriad of things about her entire cancer experience that is shocking and perhaps that’s why it takes so long to accept. Each little thing has to be faced, processed, grieved, accepted and eventually transcended. This is no over-night task. This is not something one accepts and then is able to ‘move on.” Maybe some people can do that, but I’m not one of them.

In many ways I’m still grieving and when I read this email about the incredible changes that happened to Aria in such a short time, it brought me instantly back to that month of wondering if she’d ever come back. The changes were so severe that I kept wondering if I ought to be preparing myself for her to remain this way. It was almost impossible to imagine her coming back and what that would look like. It is essential that I mention that the changes were entirely steroid driven and were in fact temporary. Aria is back better than before!
Subject: Aria’s habits
Date: February 11, 2008 2:59:49 PM PST

In the last week or 10 days, Aria has developed these odd little
‘self-comforting’ habits that are fascinating to observe. On the one
hand, I watch her like a scientist and I feel almost emotionless. I
observe and collect data. On the other hand, I am her mother, so it is all I can do not to be in tears consumed by an overwhelming sense of sorrow. I’ll have you know, I have no problem with tears or with sorrow, but I do have a problem with being consumed by both so that is part of my present battle. I am fighting against being consumed by my anxiety and sadness. Staying in a place of consumption does very little in the big picture of goodness.
Since Aria had her haircut, her ears have been exposed. She loves them! It is like she has discovered them for the first time and perhaps she has because up until this time, they have been hidden beneath long hair! Although, now that I think of it, she wore her hair up a lot and her ears were exposed then, so I think it is safe to conclude that this fascination has more to do with steroids, boredom and comfort than a new physical discovery. Regardless, she plays with them constantly! She folds them forward and back, tucking them in toward her ear canal. She’s also taken to picking at her lips, which has become a little nasty. Her lips are dry and pick-able, but this is something I am urging her to stop doing since infection and lip sores are common enough already. So, I gave her a “lipstick” that she can call her own. I’m hoping that she’ll take to rubbing on the lipstick constantly instead. We shall see.
She also likes to rub her pointer finger over the top of her eye. She gently takes her finger across her eyelid just below where the bone defining where her eye-socket is. Occasionally, she’ll bring her thumb into play as if she’s going to give her skin a little pinch. She is puffy now so I’m sure her eyelids feel swollen and weird, which is why she wants to play with them. I can’t help wondering if she has a strange new sensation when she blinks. It makes me think of how my face feels after going to the dentist and getting numbed up. I feel as if my face is swollen and I can’t help but touch my cheeks to see how disfigured I’ve become. I wonder if it’s a similar feeling for her.
The last thing she’s started doing is to gently pick at her cheeks near her mouth. This is actually quite adorable. She’s taken to eating toast with butter pretty much every single day a few times a day. Toast creates a cascade of crumbs that stick to her mouth and cheeks when she eats. She meticulously picks off the crumbs and continues this new sort of grooming long after the crumbs are gone.
Imagine for a moment putting those three behaviors together. There she sits cross-legged at the kitchen table. When she’s done eating, she often likes to remain in her chair with her head resting on an extended arm. She’ll sit there with only her thoughts. Sometimes her eyes are open and sometimes not. She likes to take her right hand to her right ear and flick the top of her ear over. Her fingers flick and then move to her lips where she gives a quick pick and poke and then upward to her eye socket where she gives her right eye a methodic rub and then her fingers trail down to her cheek where she picks invisible crumbs. Her fingers then race back to the top of her ear and the process is repeated. She can do this for a long time! She’s completely calm and nothing about her movements are stressed or hurried. I sense that she is giving herself some kind of pleasure..a mindless way to pass the time that keeps her connected to the body that is changing so rapidly and feels so sick. I wonder if she feels separated from herself somehow. I wonder if this constant touch keeps her in contact with herself.
These changes have been subtle and slow as I’ve told several of you recently on the telephone. I received quite a bit of warning about possible changes so I felt quite prepared in some ways. However, I’ve come to recognize that these changes are very similar to the process of change I experienced when I was pregnant. I read everything I could possibly get my hands on when I was pregnant with Reo. I noticed that after I had memorized the present month I was in I would skip ahead to the next month or 2 just to see what lay ahead. I remember the anticipation of the changes. I remember wanting to feel pregnant and look pregnant and that feeling and look seemed to take forever! Until suddenly one day, voila! no denying it, I was a butterball! It seemed in some ways to happen over night and yet I know that the changes were subtly happening over days and weeks and months. This is exactly what’s been happening to Aria. As I look at her mood now, which is withdrawn and sad, I can recall the slow process of getting to this point. I was told that she would be hungry and her mood would swing, for example. Indeed over the last 2 weeks she has steadily increased her diet. I hasn’t been like she wants to sit and eat an entire turkey. However, she wants noodles for breakfast and within 30 minutes is hungry for yogurt and she can eat an entire bowl and 30 minutes later she wants toast. It is a constant need to eat something throughout the day as opposed to eating enormous amounts of food at once. Her mood is interesting in that she is 4 years old and already susceptible to an array of emotion throughout the day. What has changed are the triggers that set off her emotions. Toast falling on the floor is life shattering. Having 4 pieces of toast on the plate instead of 2 even though she’ll eat 4 pieces is just too much for her eyes to digest. Rianna coming too close to her makes her scream in a panic. She hates taking a bath, something she loved to do before she got sick. These subtle little changes have created in her a magnificently different Aria. It is a process and we are weathering it as best we can. It helps to document to it and I thank you for providing the venue in which to do just that!

Aria mindlessly picking her lips. You can see how bloated she is and how distended her belly became.

Aria is bending her ear into her ear canal. You can sort of see that her lips are completely dry and covered in sores.

There's another picture of Aria looking at the camera when this series was taken. Most of the time, however, her eyes were closed and this is was her pose.

Even when trying to be playful, she would rub her eyes, face and toy with her ears.

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