Saturday, September 12, 2009

Aria is Coming HOME!!!!

Aria as a Warrior (Kansas 2007)

Aria and Reo running through Joyce's field (Kansas 2007)

Aunt Joyce's pond

Fishing with Dad at Aunt Joyce's pond (Kansas 2007)

December 5, 2008
Subject: Aria is Coming HOME!!!

YaHOOO!!! Yesterday Aria's ANC had dropped to 128 and Dr. Trobaugh really preferred that we stay another day but was willing to let us go home with some antibiotics if we really, really, wanted to. We decided to stay another day. Aria's spirits are high. She's feeling super well and she's full of the dickens. She was getting mighty bored and starting to be a real crank-pot so I'm thrilled that she's coming home. I'll be weaning her from the TV and getting her into some other things, namely writing her letter to Santa!

Speaking of letters...Aria received 28 cards yesterday! My Oh My! It was the most wonderful thing and I thank each of you for sending them! If you happened to send her one today, not to worry, they'll save them and we'll get them the next time we come into clinic, which will more than likely be next week. Really and truly, it meant the world to Aria to receive these cards and not only that but it meant the world to me. I'll never be able to fully express the way they energized me. It helps so much to receive little notes like this from time to time. It is the very thing that I draw from to keep me going. Sometimes my own reserves are so depleted that I can lean upon you to pick up the slack a little so that I can restore myself and continue on. This is so long and drawn out in many ways and it's hard to feel like there's anything 'normal' about it. We haven't had long, periods of time without something to do related to cancer so we' haven’t been able to let our guard down. Instead, we've been on a two week course that has been up and down, here and there, this way and that so it is no wonder that it doesn't seem normal. I can't grasp it. I can't wrap my hands around the process and know that this is the way it's going to be for a while. I can't find anything really tangible yet. In some ways it has been a wonderful lesson in the ‘simple living of day to day.’ Dr. Trobaugh assures me that I will someday in the course of the next 16 months, but she also knows and says, "But then again, maybe not." We laugh about this reality because it’s the only thing apart from crying that we can do. I've learned that I reserve my tears for other things.

I am so very thankful that you heard my call to send cards and that you answered in such an overwhelming way! It isn't easy, despite what you might think; to reach out that way, to be vulnerable, to ask for help, to admit burn-out and boredom. I know it is so obvious but emotionally these are things are typically guarded and protected. When they are revealed, it leaves me feeling cold and a little scared. I'm learning, however, to take that deep breathe, to trust in Love, to reach out honestly and to let others carry the load for a while. It is a humbling experience mixed within a vast array of humbling experiences. This one just happens to be extraordinarily personal. I thank you for you love, your friendship, your consideration, your concern, your prayers and thoughts, your time, your listening ears and reading eyes, your strength, your creativity, your presence, and most of all your willingness to be with me.

I have much more to write about, particularly yesterday. I visited the mother whose daughter is dying down the hall from Aria. I saw her. I talked to her. I hugged her. I cried with her. I touched her daughter. I said good-bye. It was an honor to be there at this stage of their journey. It was very hard and I'm convinced it was absolutely the right thing to do. She and her daughter deserve a separate writing, one where I can sit with my thoughts of only them. I'll be formulating that today and then I'll sit and I'll write.

Until then, I'm tidying up for Aria's arrival home, which should be in the next hour or so! I am so thrilled I can hardly contain myself. My spirit is soaring with Life! ~j

December 9, 2008
Subject: Aria’s counts

I just wanted to send a quick word to let you know that Aria is doing so well. She had a finger poke yesterday 12/8/08 and her ANC was 1024. Just the Friday before it was 228. I think this is just extraordinary. Her hematocrit was 32 and everything else was near normal. I mention her hematocrit not because I really understand it as anything other than a gauge that let's me know how much energy I can expect her to have. Normal is somewhere around 35 and Dr. Trobaugh has said that if she ever had a hematocrit that hovered around 28 as Aria's does so often, she'd never get out of bed! With a hematocrit of 32 Aria is perfectly normal in terms of her energy and spirit. She was able to return to school today and had a wonderful day. She is, unfortunately, dealing with the weaning process of less movie time now that we are home. She is allowed only 1 movie on school days. Reo isn't allowed any television during the week and they are allowed movie time on the weekends. It is a dramatic change from the hospital, so it is no surprise she doesn't like it. Today, she lost her movie privilege altogether because she's beginning to show some spoiled sort of ungrateful,l entitled nonsense that I have next to no tolerance for. I understand completely that she is also only 5 years old, but I tell you, the temptation to indulge this child in her every whim because of what she has to go through is so very enticing. It isn't the right thing to do to my mind and so I don't. She is indulged plenty, but a balance has to be struck and some mighty hard lines and clear boundaries have to be made. I tell you what, sometimes I feel like bitch-mom #1 because I have to lay the law so often but it is what it is. Funny thing about kids, as you all well know, if you can only endure the length of their tantrum, they move on rather quickly. Aria and I had a wonderful afternoon writing her letter to Santa. We played. We snacked. We talked. It was wonderful and I don't think she missed her movie much. She assured me later in the day, "Mom I've worked on my attitude!" I’m very proud of her.

Aria is back on her daily chemotherapy at 1/2 dosing and she is scheduled for another count check on Monday December 15, 2008. That check will determine if we dial up or down her chemo once again. She receives her big gun chemo on December 23, 2008. We're going to a Make-A-Wish Christmas party on Friday. The really wonderful thing about it is that oncology patients are scheduled for the first 2 hours and then all the other kids with various medical conditions can go. The oncology patients are separated because they are so immuno-compromised that anyone in attendance is expected to be in pristine health. I'm thrilled about it. I'm keeping Reo out of school that day so we can go and play and have fun. It will be a nice break for me too. I can let the kids go and play and be watched by someone else! HEAVEN!! Now if only there was a wine bar nearby and a designated driver!

I'll mention that we received still more cards at the clinic on Monday. So many thanks to you all!! Really, I feel completely inspired and re-energized. Thank you! Thank you! Thank you!

Last but not least, I'll mention that we just got word that Doc's beloved Aunt Joyce had a massive stroke today and is now in the hospital in Kansas. We don't know the full extent of her prognosis but I'm afraid the news is grave. Please keep her and Doc's entire family in your thoughts and prayers. The photograph of Aria as a warrior was taken at Aunt Joyce's pond in September of 2007. She is very, very dear to us. ~j

December 3 2008 ER visit

These events really do appear out of nowhere, which is what makes living with the always looming, always lurking presence of them difficult. I suppose I’m getting better at going with the flow of it but I have to say that the constant, weird, and very real threat of something happening that presents in the form of a million pesky little worries, “Is Aria warm today? Does Aria look ok? Aria, are you sniffling and feeling alright? How’s your throat today?” is mind boggling. It would so different if this was happening to me. I’d be able to instantly notice when something felt off. I’d quickly learn to anticipate reactions to drugs and know what to do. I think the anxiety I would have would be different and perhaps even a little less. The fact that this is happening to my daughter and I can’t feel what’s going on inside her body to help me know how to react and act is a challenge.

I can’t help but wonder if you are reading this thinking, “Well of course Julia! Duh! How can you not be worried? Isn’t that called vigilance and being a good mother? Isn’t that what it’s all about—you know, staying one step ahead of the game?” I would agree with those thoughts entirely. What I’m referring to when I question my anxiety is what it means to live in the moment. When I’m anxious, I’m more than likely not in the moment. I’m in the ‘what if’ moment that is fiction and not present. When I’m not present I’m not centered. When I’m not centered I’m not my best self. When I’m not my best self, I’m not performing at my best.

Aria, Reo, Rianna and Doc deserve my best. You may be wondering, “Jesus! What a load of pressure you’re putting on yourself! You’re no super woman.” I would heartily agree. I’m not. I am, however, privileged to have these beautiful children and husband, who as I’ve said, deserve the best of me. More importantly, I deserve the best of me. I’m not healthy when I’m anxious and neither are you. I’m not at peace and it is precisely in times of crisis that peace is so healing, so necessary and yet so often out of reach.

I’m not suggesting that I deny myself the real worrisome aspects of this journey. There are plenty to keep me well occupied. What I don’t need are things to worry about that aren’t real but are simple manifestations of anxiety. These are things that complicate life and I can go there very easily. For example, in this email I go on about Aria and Kindergarten, worrying that she won’t be able to handle it. Kindergarten is nearly an entire year from when I wrote this email. You and I know that so much can and will happen in that time so why worry? But I did because I attached all kinds of ‘what if worries’ to the real worries I was presently contending with.

This is how it happens. Real worries and concerns arise and then suddenly they take on new shapes and forms that fling me into a world of my imagination. I find myself completely nervous and unable to enjoy the moment. I’ve lost my sense of peace. I detach from those around me. I lose my sense of compassion for a moment. I become more self-absorbed. These are not healthy things and this is not how the gift of Life is to be lived.

I am getting better at identifying when this process starts to happen. I'm getting better at stopping myself and bringing myself back to the moment. I am able to live comfortably with knowing that what will happen a year from now is a complete unknown. I’m comfortable knowing that how my day will unfold is also an unknown. I’m thrilled at the opportunity to watch it happen, rejoicing in each and every moment of it.

This, my friends, is a process. It has taken me a long time to learn how to live this way. It is simple and not always easy but I swear to you, it is true and full of purpose. (September 2009)

December 3, 2008
Subject: Aria is off to the ER!

Here we go again! Aria climbed into bed with us around 3am and Doc asked if she was feeling ok. I heard Doc turn the light on in the bathroom and knew he was going for the thermometer. I felt Aria. She was definitely warm. Doc came in and Aria understood by the shape of his silhouette that he was holding the thermometer. She knows what this means. A little gasp filled the room followed by an "Oh No!" but she sat up and understood what she needed to do. 100.9 was her temperature. 100.4 earns a trip to the ER. We waited a few minutes and took it again. 100.9. We all got up. I checked her hospital bag, while Doc put magic cream on her port so she can be accessed in the ER and then I cuddled with her on the sofa downstairs waiting for Doc to get dressed. I had already called the inpatient pediatric oncology ward and let them know we were coming. If her counts are above 500 then we won't have to be admitted but if they're below then we get to stay. Aria's ANC a week ago was 990 after 2 weeks of falling counts. She may finally be getting the bug that she's fought for so long. Let's hope her counts are above 500. Let's hope she isn't getting a bug. Her spirits are pretty high. She was getting anxious as they were leaving about 'the poke part'. I don't blame her. She's done it a million times already but the truth is that it's never any fun! I reminded her that the ER has popsicles and that lit her up! As soon as I know anything, I'll let you know. This one has blind-sided me. ~j

December 3, 2008

Subject: Aria has been admitted

Well, her temperature at the ER was 99. They did a quick throat culture after looking at her tonsils and she got a chest x-ray. Her ANC was 180. I know! I know. I can almost imagine each and every one of you reading this and feeling sunken. I feel the same way. Doc mentioned to me that she got her vincristine a week ago so it isn't a huge surprise to him that her counts tanked. When he called a few minutes ago they were still in the ER waiting to be transported to her room. I can tell you right now that she's more than likely thrilled. I'm serious. She'll be watching movies all day long, which is a major highlight for her. I'll let you know what room number she's in. Keep us close and in the light! ~j

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