Saturday, September 12, 2009

Aria and the end of Autumn 2008

Aria and Reo having a goofy moment in the car.

The entire month of November was a blur. I didn't write anything about it until the first day of December! There was a monotony that I couldn’t seem to escape. I was tired and on the edge of illness a lot of the time, which made life particularly draining. As I read through this email I realize that the month was also the beginning of some serious conflicting emotions that would plague me for months afterward. Specifically, the disconnect of Aria doing so well and looking so well but just beneath the surface of that appearance was this raging disease constantly threatening to remind me of its power and darkness. I felt a desperation to return to some semblance of normal but that normal was always just out of reach. It felt like we were so close and yet so far.

As I think it about it now I recognize the wonderful lesson this month gave me. The image that comes to mind is this; there was a root protruding from the crumbly flesh of earth that appeared strong and secure. I reached for it, holding on allowing my full weight to hang from it, when it began to give way. I felt like I was falling still holding to this idea of a root and as I fell I caught sight of another root, so I reached for it but it, too, pulled from its earthy anchor falling with me. Root after root--the idea of normal pulling free from my illusion of it as I gently tumbled into truth and trust. This is how the free fall through November went. (September 2009)

December 1, 2008
Subject: Aria and the end of Autumn

It is November 10, 2008 at 10 o'clock in the morning as I begin this writing. The day is warm and mild. I've been in a negative place, which is probably why I haven’t written much. I'm slowly beginning to emerge from this shadow but I have a moodiness I find unpleasant and difficult to resolve. In some ways my mind-body perspective is in perfect rhythm with the season. Leaves dying, drying and falling upon a cold wet earth. Layer after layer of them sheltering decay, nourishing slow growth, awaiting warmth and sun. I'm like tumbling leaves riding the current of emotion.

It’s a clinic day and we parked on "pink" level in the parking garage of Sacred Heart Children's Hospital. We are taking the elevator to level 3 for what seems like the millionth time in a mindless, familiar routine. I can't escape my voice gently reminding me,
"Hey, Julia, psst! There's nothing routine about this!"
Sometimes I want to smother that voice, but the reality is that the truth is the truth.

Aria was going in for a simple finger poke so we could check her counts and see if her chemo needed adjusting. The clinic was quiet and bright but there was a heaviness in the air. It's always there. We checked in; Aria was weighed and measured followed by assessing her vitals and almost immediately they were ready for her finger poke. We were done with the appointment in about 40 minutes. Aria had no interest in staying this time to play. We left and waited in the hallway for the elevator, trying to keep Rianna somewhat contained. She had already managed to push both the up and down buttons so we were trying to guess which elevator would give us our magic ride. As the middle one opened, a lovely young woman and her son, who I learned was 10 years old, were standing there. We entered like a storm. I was reassured by the mother that having Rianna push every single button including the alarm was not going to phase them in the least. This was a relief. Rianna proceeded to push every single button and we began our start and stop descent. I noticed that this woman was looking at Aria with a degree of curiosity. She had the sweetest, most compassionate smile. She looked at me with her eyebrows raised knowing full well that an elevator stop on level 3 is pediatric oncology and I nodded my head. She sighed closing her eyes slowly and nodding. Suddenly her son broke the tenderness of the moment by lifting up his shirt saying,
"See what I have to wear?"
He was wearing electrodes and a heart monitor. Rianna and Aria were enthralled. I'm sure Rianna was thinking, "More buttons to push! Yipppeeee!" I promptly picked her up. I said to him,
"Whoa buddy! What's with all the plugs?"
He giggled and said, "My heart's broken."
Stunning. I was speechless. I was instantly drawn to his mother, who said,
"Yeah, he had open heart surgery a few years ago and we may need to do something like that again. We're just checkin'."
"Well, I'm sure those wires and electrodes will show your doctors everything they'll want to see so you can start feeling really good again!" I told him.
"Yeah I know." he said with resignation.
The girls and I were leaving the elevator. I turned, looked at the mother and with my hands over my heart I told her, "I'll keep you right here." She let out a sigh and smiled, "Thank you--you too!" The stainless steel doors clicked shut leaving me to my world and her to theirs.

Later that day we got word that Aria's ANC was 2500, which is too high and higher than 2 weeks ago, which was 2246. Dr. Trobaugh was unphased. I imagine that she’s looking at Aria’s ANCs over several weeks so little fluctuations are to be expected. For me, it is still unnerving. I’m just not used to it yet. I suppose I’m impatient—just wanting to find that stable ground. I’m wondering if it even exists. Regardless, Aria feels really well. Her hematocrit was nearly normal, which explains her high energy level. She has been able to go to school. These improvements are remarkable and yet I found myself feeling rather negative. It was the strangest thing.

I found myself feeling completely irritated almost every time someone said to me, "She looks so good! She's doing so well!" I remember smiling and feeling thankful and joyful that she is doing so well and at the same time I was seething. I kept wondering, “How can my spirit be at such odds?” My attitude was making me nuts! I couldn't seem to shake this desire to scream,
"Yeah, she's doing great BUT she has leukemia! She's taking chemo every single day! We still have 16 months to go!!"
That BUT word was creeping in like nobody's business and I was allowing it to happen. I couldn't stand it and at the same time I couldn't halt it either.

There was this weird darkness about my thoughts surrounding her. I wanted so badly to focus on how well she was feeling and how good she looks. I wanted so badly to be able to focus on the moment and give it my sunny all. I wanted to be positive. It felt false. I tried to take energy from others and their perspectives. My irritation had nothing whatsoever to do with the people who made those comments per se, but I think it had a lot to do with wanting to be validated somehow. I wanted people to acknowledge that she is doing well but that things are still challenging. The process is exhausting in a peculiar sort of way; there isn't anything too physically demanding but the emotional weight I carry is burdensome. People are genuinely concerned when they ask about Aria and they are genuinely thrilled to celebrate her wellness. It does help to hear those things. At this time, however, I was not in a frame of mind where those words were of much comfort and that was frustrating.

I can reflect and know that I have people in my sphere who know all the details of this process on an almost daily basis. They understand how tedious it is and how the emotional pendulum swings wildly. The work to get it to rest is a grind. Like anything in life, things get old and stale. People look for ways to breathe life into the same old routine. This is no different in almost every respect.

It is worth mentioning that during this time, I was not physically at my best. I hurt my back and that had really soured my disposition. I had picked up Rianna in a weird way, apparently, and tweaked my lower back something awful. I've never had anything like it and I was so uncomfortable that it was unnerving. Pain and fatigue are formidable foes.

A few days after Aria's finger poke, it was my birthday, which is normally something I celebrate in parade style. Not this year. My folks were here, which was wonderful. They were able to see Aria much improved and I found their perspective helpful and soulful. They allowed me plenty of latitude with my conflicted emotion. They understand the nagging presence of the 'but' that whispers incessantly in my ear. Being here with us and seeing our day to day was, I think, a reminder to them that as good as she feels, she's still not out of the woods. Again, I think my overall compromised health put me in this place of spirit that was seeking and searching for validation. I wanted others to see things as I do. I didn't want to be dismissed with comments like, "But she's doing great!" My folks were tender and gentle with me. They understood completely that my reserves were depleted and they stepped in whenever and wherever they could. It was a relief having them here.

Shortly after their visit, I got hit hard with a nasty bug that I am just now, 2 weeks later, beginning to recover from. My back is improving but that healing process is taking a long time too. Clearly this has affected my view of that last few weeks and I think it is important to say that when I feel low, it is hard to see the world as a really rosey place. It is no wonder I couldn't celebrate Aria's wellness with a full spirit when my own health was teetering on the edge. I have to validate myself and I have to stop searching for it outside of myself. I am the keeper of my health and my reserves. Only I can replenish myself. When I remember this, it helps a great deal.

However, these past few weeks have been tough and the worst part was that I was scared to death Aria would get whatever was keeping me down. I kept hearing myself say, "What if Aria gets this? Oh man, I can't imagine how sick she could get!" cough. cough. "Where are the chlorox wipes?" cough cough. sneeze, sniffle. "Aria, how you feeling? Are you feeling stuffy? Do you ache anywhere?" Aria often said indignantly, "mOm, I'm fine! Sheesh!" I was relieved, but still worried. BUT, there it is again.

Rianna got sick and so did Reo. I dreamed of magic capes made of chlorox wipes for Aria. I imagined a matching chlorox wipe crown. I became obsessed with cleaning surfaces and keeping germs away. I kept telling myself that I was getting better and feeling better than the day before. "Man, my head aches! Yeah, but you're not as stuffed up as you were yesterday. Well, that's true, but gee whiz I'm tired. I just want to take a nap. No, no, no, you're feeling better besides you haven't cleaned the toilets yet. You don't want Aria coming down with anything!" Suddenly I'd have a burst of energy and I'd be off. It was a crazy several days!

Aria never got sick. She managed some sniffles but was never feverish. I noticed that she tired a little more easily. It was interesting that she started to feel luke warm about school and almost immediately upon entering the house after school would change into her pajamas.

Aria has the most incredible assortment of pajamas you can imagine and that is all she wants to wear. It makes perfect sense to me and the curious thing about it is that it represents one of the subtle emotional trials about this journey with her. Aria associates her pajamas with being in the hospital and being sick. So do I. She knows that she's more comfortable wearing them and would wear them all the time if I allowed her. Regular clothes are not comfortable. It seems to me she wants to explore fits and bursts of play but most of the time she wants to lounge, play quietly, watch movies, and slowly, gently heal. I know this makes perfect sense, but I can't help sometimes feeling seduced in my desire to hurry this whole process along. I want to be looking back at all of this from the other side, knowing that I'm really moving on. I'm still moving forward but my steps have slowed and I have to accept that this is just another part of the overall journey.

Aria went back to clinic for her chemotherapy and examination with Dr. Trobaugh on November 25, 2008. Doc was not able to be there with me because he was at a meeting in Seattle that had been arranged months before this appointment was made. Now this, under normal circumstances would have been absolutely no big deal. However, I was feeling anything but 'normal.' My back, although better, still hurt in certain positions and I was keenly aware of how much I was guarding my movement. On top of all that, I was exhausted. I hadn't been sleeping well for days and my cold raged on. I was wiped out and the thought of being in clinic by myself for hours was absolutely overwhelming. I was so frustrated with myself too. Clinic is a very familiar place and I know the routine like the back of my hand. I knew I was going to be able to manage but I just couldn't escape feeling like it was too much.

I wrote an email to my dear friend Kai, explaining to him how I was feeling. My email was meant to sift through my emotion and find some clarity and strength on the matter. I knew I'd be fine and everything would be great, but I just couldn't see it very clearly. I vented and purged and felt better having done so. Kai immediately responded to my email with a phone call. Although these are not his exact words, this is what I heard;
"Hey! Funny thing. I just happen to be free during the entire time that you're going to be in clinic so I'll just meet you there!"
I burst into tears. I sobbed, which is something I haven't done in I don't know how long. The relief I felt was overwhelming. I was beyond grateful. It was such an unexpected surprise and came without me having to ask. It came without me feeling guilty about still needing help and not wanting to be burdensome to others and so forth. For Kai to volunteer and for him to know that that is exactly what I needed is true friendship in action. My kids adore this man and when I told them that he was going to play with us at clinic, they jumped for joy. Literally. Aria's eyebrows raised and with a crooked little devilish smile she exclaimed, "WHAT? That's great!'”
It was.

Clinic was busy on this Tuesday with people that I didn't recognize. Many of the kids were older and there was a bustle to the clinic that seemed new. The kids were great and Kai was wonderful to play with them in such a physical way. He threw Reo around on the gym mats in a manner that Reo loves but I would never have been able to do. Rianna cooked all kinds of food for Kai. They colored together and played. I don't play very much when I go to clinic. I still find it a hard environment in which to feel playful.

Aria felt very independent. She wanted to be weighed and measured without my help. She wanted to go into the exam room to have her vitals taken without me tagging along. "I'm ok Mama! I can do this myself!" she said. A part of me was overjoyed by this but at the same time I felt sad. What a thing for a 5 year old to say. What an experience for a 5 year old to have and to know and to understand so well. It is hard to be witness to all of this. It is a jumble of feelings, and I'm constantly sorting them.

Her independence enabled me to catch up with her beloved Krista and talk about some issues that came up with Aria's parent teacher conference that I had had the day before. Aria's preschool teacher isn't worried about her academically or even socially, but she is concerned about her overall stamina and endurance. Aria is different from her peers in this regard. She doesn't have the same amount of energy. She doesn't have the same kind of focus. She tuckers out quickly and her teacher wonders how she'll fair next year in kindergarten 5 days a week. Right now Aria attends school 3 days a week and it is plenty. 5 days a week sounds enormous and it is only for 2 1/2 hours! I'm requesting that Aria's preschool teacher, who also teaches Kindergarten, be her kindergarten teacher. I think that continuity will be grand. She knows Aria and understands her. She understands our situation completely. I remember sitting there at the conference telling myself, "You will not cry! You will not cry! You will not cry!" You see, Aria is doing so well, BUT.........

I told this to Krista with tears in my eyes. Krista understood. Krista knows. This is what she does. She was quick to validate me and to reassure me that Kindergarten is next year and a lot can happen between now and then. Krista reminded me that Aria may feel a lot better over the course of time. Her energy may continue to increase. Her stamina may improve. We just don't know. Once again I found myself back in the moment and grateful that Aria is doing so well.

Dr. Trobaugh was ready to see us. It had been a month since I had visited with her. I've said it before but I'll say it again, Dr. Trobaugh walks around with a casual air that envelopes me with 'everything's gonna be alright.' It is almost a mystical experience being in her presence. Her confidence, her focus, her care, her concern, her joy, her laughter, her earthiness, her overall being is a whopping dollop of rich yumminess that I can't seem to get enough of! Aria climbed onto the examination table. Kai played with Reo and Rianna and I wandered around the table a little. I paced. I was trying to feel physically comfortable but not much was working. Nothing about me felt still or calm.

"So, how you been?" Dr. Trobaugh asked.
I'm trying not to cry. "Good! We've been good! Aria's been really healthy. She's been feeling as well as I can remember! It's good!"
"Uh-huh." She looks at me deeply, penetrating my bravado.
I'm a little nervous and breathlessly speak as I realize she's seeing right through me, "Well, I've been sick. I hurt my back and I've had this weird nasty cold for over a week. Reo and Rianna both got it but fortunately Aria's been able to avoid the worst of it." I'm wondering why I feel like the kid whose been caught with my hand in the cookie jar.
"That explains quite a bit." she begins.
I cut her off in a weird panic. "Explains what? What's her ANC today?"
"Well, that's the interesting thing. Her ANC dropped quite a bit to 990 so she's obviously fighting whatever you got."
I hear myself say, "uh-oh." but I say aloud, "Well, she's done really well." I notice that I'm sweating. I'm trying to be light.
It is here that Dr. Trobaugh shifts her gaze to Aria. She says emphatically, "She looks amazing! She IS doing really well." She approaches Aria and lets her know that she's going to examine her. She begins by asking questions that are directed at me but she asks them to Aria, which is so sweet. I let Aria answer what she wants to and I fill in the rest.
"So Aria, have you been eating ok? Does your tummy hurt? Does anything feel bent? (this is Aria's word/way of describing any kind of pain) How's your peein' going? Have you had good poops?"
Dr. Trobaugh is almost sing-songy about her manner. The lightness she brought to the room was healing. Still, I was listening and answering all the while hearing myself say, "This is a routine evaluation. She's doing great, but....."

Dr. Trobaugh suggested that we decrease her chemo to bump up her ANC a little. We're going to try this dosing (67%) level for several weeks and see how Aria does. The fact that her ANC is so low and that we've been dealing with a tenacious bug for so long is worrisome and Dr. Trobaugh wants Aria on the rebound sooner than later. Clearly, she doesn't want Aria's counts to continue trending downward, which would only make her more immuno-suppressed and susceptible to illness. I asked her briefly about Aria's preschool teacher and her concerns about her energy level. Dr. Trobaugh is of the opinion that Aria's stamina may increase but that we'll just have to wait and see. "Julia, we want to keep her a little anemic so her energy won't ever be all that great. The chemotherapy she takes also does a number on her stamina so, we just don't know what the months ahead will bring." This is a bitter pill to swallow. I want to know what the months ahead are going to bring. I want that illusion of control to give me some kind of comfort. I know this is absurd but the place I find myself feels frustrated that we've come so far, we've done so much, we still have so far to go and we still don't know. I remember sighing and leaning against the wall for a moment. Shortly afterward as things were winding down, we exchanged a few pleasantries. I told Dr. Trobaugh that it had been my birthday and discovered that she, too, is a Scorpio, which explains a lot to me. It is no wonder she and I resonate so completely! It is no wonder that I feel completely at ease with her. It is no wonder that she gives me such incredible strength. I adore Dr. Trobaugh from the top of her head to the tips of her toes!

Thanksgiving was just 2 days away and I had no interest whatsoever in putting on any kind of feast. In fact, all I kept thinking about was going to bed for 3 days! I wrote to my Goddesses about the last few days and it was in the process of writing that something dawned on me. It is so obvious that it's almost funny. I realized why clinic remains so challenging. Why the air is still so heavy. Why I'm not inclined to be playful. Why I sweat during our evaluations with Dr. Trobaugh. Why I'm nervous. Why I hold my breath. I'm scared, plain and simple. I get scared every single time Aria's blood is drawn. "What is it going to show this time?" I wonder and I worry. "Is something horrible going to show up again?" I know the likelihood is slim, but it does happen. I don't quite know how to resolve that fear. I'm not sure I'm supposed to do anything but to learn to live with it. Identifying and admitting that it's there is important, even in this phase of her treatment when she's doing so well. I don't have nerves of steel. I feel vulnerable but I'm ok.

The day after her treatment, she started to feel strange and I began to worry that she was finally getting my cold. By Thursday she was wiped out. I had given her a bath with Rianna and noticed that Aria was a pale yellowish color compared to Rianna's rosey pink hue. After her bath she complained of being cold and immediately put on some pajamas and put herself to bed. I watched her closely. I paced around her bed and periodically felt her forehead for a fever I was almost certain was going to happen. She slept soundly for over 2 hours and when she awoke, the twinkle was back in her eyes, the sparkle was back. Doc gently reminded me of Aria's chemotherapy just a few days before. He wasn't the least bit surprised by how her body was reacting, which didn't make him any less concerned but his ability to focus on the effects of chemo versus some kind of sickness brewing was very helpful to me. I realized that my mind has been a little stuck in a 'sick' place.

The process of this writing has revealed a couple of the things to me. I keep thinking about the woman I met just as we were leaving the hospital for the very first time. Everything was completely new to us. We were just beginning our journey and she was already 10 months or so down the road. She was then where I am now. I remember her anger. I remember her need to be understood and I understand her need. I've just spent 2 weeks in that place and although I never felt angry per se, I felt annoyed and rather forlorn. I realize that I began a futile search for validation from others. I realize that I was depleted, which is what fueled the search in the first place. It is crystal clear to me now that the farther from myself I seek to find what will restore me, the longer it will take to find the healing I'm so desperate to discover. Today I spent the day very close to my heart and my spirit. I didn't find myself searching beyond the confines of my own being. It felt good to return to myself once again. I'm afraid the moodiness in the air remains but I am confident that the warmth and sunshine that I wish to see will soon radiate from within me. I remind myself that the promise the new day brings is a promise I ought to make to myself. I do and I will.

Aria is a joy. She is so vibrant and full of life. She sparkles and glitters. Her imagination is wild and she flits and flutters through her days like the fairy spirit that engulfs her. It is marvelous being in her presence even when it's challenging. It helps so much to assign words to the things I see and feel that have come to dictate so much of what defines our world. I know it is a rowdy ride sometimes. Having you along is a comfort. The fact that I can open the window to my spirit to let out what is stale and stagnant while welcoming freshness is an enormous blessing. ~j

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