Aria's Consolidation Phase

I think very early on I realized that Aria’s leukemia would be a challenge on many levels, not the least of which was battling the cancer itself. I realize now that I was thrown into a hyper-drive of a self-discovery of sorts. I wasn’t going to be able to deny my feelings no matter how much I may have wanted to. This was intimidating because we aren’t taught well how to handle the dark side of ourselves. As a matter of fact we hear over and over about the importance of staying positive and as much as I believe that to be true, I was discovering that it is also a rather ineffective form of denial. I learned that the more honest I was about how I was feeling, the more hopeful I became, the more trusting and open too. This email is in some ways the beginning of that self-discovery.


Subject: Aria’s consolidation part 2
Date: March 2, 2008

As you know, Aria is in Phase 2 of her treatment plan. For the sake of review, there are 4 major treatment phases; Induction, Consolidation, Interim Maintenance, Delayed Intensification. These phases vary in terms of length depending upon a child’s particular risk factors and how well they are doing during a particular phase. Aria is considered standard risk so her treatment will follow this time line; Consolidation is 4 weeks, Interim Maintenance and Delayed Intensification are 8 weeks each. After the completion of these phases Aria will enter the longest treatment phase called Maintenance, which is ~12 months long. Reaching maintenance is by far what people are striving for and every time I meet a parent with a child with ALL it is what they talk about, “We finally made it to maintenance” or “We’re almost at maintenance” and so forth. Maintenance is still a host of medications most of which are given at home but monthly clinic visits versus weekly and procedures only once every 3 months instead of weekly in these early phases of treatment. People describe feeling more “normal” and I can see that already happening to us now.

Aria is back! She is feeling great and this past week has been wonderful watching her emergence from the steroid’s darkness. She has been playful and talkative. She is still weak but getting stronger each day. She wants more independence with all kinds of things she used to do and is laying claim to those things once again. Her spirit is bright and radiant. I’ve often imagined her like the rippling sparkle of the sun as it dances on water. You can see twinkling stars of the sun’s reflection jump with the movements of the water. This is exactly like Aria’s spirit. She dances. She twinkles. She glistens and glows. She is magnificent.
Aria’s clinic visit this past Friday February 29, 2008 was awesome! The clinic itself was quiet almost too quiet. There was an office just off the main waiting area that was dark since the woman occupying that space was off for the day. It was rather unsettling, sort of like being in the office on the weekend when no one is around. There were only a few families in the waiting area and for a long time, it felt like we had the entire place to ourselves. It was wonderful. There were 2 families there that we had met before. Both of the children being treated have ALL and both were nearing their maintenance phase of treatment. The obvious relief on their mothers’ faces and in what the mothers had to say was powerful. I kept thinking that the phase we’re in now and the one that follows represent the calm before the storm. Delayed Intensification is by far the worst phase of treatment and getting to the end of that is a major milestone. Both of the mothers I met looked worn down and a little rough around the edges, however there was calmness in their voices as well as gratitude and tremendous relief. Their children looked fantastic and were incredibly playful. It was wonderful energy to be around.

I noticed that I was full of very mixed emotions. On one hand, I was feeling very confident and comfortable. I was thrilled that Aria was feeling better and know that these next few weeks will see her feeling the best she has felt in a long, long time. I was filled with hope. “She’s doing so great! Her numbers are fantastic!” I kept hearing myself say. Then I would look at her cuddled in Doc’s arms, quiet, reserved, back in her cocoon and suddenly it was as if a ton of bricks fell upon my psyche delivering a whopping dose of reality. Aria is in a clearing that is light, airy and sunny but a dense dark forest awaits her. My mind and my heart spent the day savoring the meadow-like clearing and at the same time my mind and my heart would race to the forest’s edge and stare. It was incredible to observe my body when I was in those moments. I noticed that I was hunched a little as if I was peering into what I couldn’t see clearly, stretching my body in ways that would enable me to get a better look. It was dark and unclear. I would run back to the meadow, to the present and try to enjoy myself but the forest in the background was daunting, oppressive and ever present. I wasn’t able to fully enjoy the meadow and all of its wonders. I did finally stop racing back and forth but I never stopped looking over my shoulder at what is waiting for us. I had to finally tell myself, “We are not out of the woods but we are here in the light to gather strength.” I felt comforted by that.

I am completely certain that some of this energy was due to a conversation I had with another mother whose son is very sick. They have been dealing with his cancer for several years after an original prognosis that was even better than Aria’s. Now they find themselves being encouraged to “let him go.” “How does one do that?” I asked her. She shrugged and told me that they aren’t ready yet and that there is still an experimental chemotherapy that they are trying now. I understand her need to try everything possible to save her child. I know her doctors are being gentle with her trying to nudge her to face a horrifically inevitable outcome. But I also recognize her need to know that they did everything possible to save him. It was a powerful reminder that once again there are no guarantees, no promises. I know this is true for us all. Life can be taken from us at any moment for any reason but there is something very different when you face death as a known threat. As an adult I can make a decision to stop treatment when I’ve had enough but as the mother of a child going through treatment, I cannot imagine for the life of me stopping until every possible avenue for cure has been explored. I suspect this is the energy I was sensing from this woman. My heart ached so deeply for her and for me. The threat of death is there for us all but for this woman it is solidifying. For me, it remains a vaporous presence that for now seems a little less oppressive but is nevertheless still there.

Aria’s lab work was wonderful. Her blood was a nice red color! Her hematocrit remains steady; still super anemic but not in need of a blood transfusion. Her white blood cell counts are normal as are her platelets. Her ANC level was over 7000, which is the highest it has ever been, which tells us that she has all kinds of infection fighting power. Her cholesterol level is WAY down too, not so much that we can stop her medication but we are going from twice a day to once a day. Small smart healthy steps toward healing! Her overall counts (ANC) are expected to start dropping because of the chemo medication she takes at home. It is normal and should not reach the critical immuno-suppressed stage. She should stay in a healthy range for the next 10 weeks until we hit Delayed Intensification and everything will change. Her spinal tap procedure went off without a hitch. She has one more spinal tap next Friday and that will complete her procedures for this phase of treatment.

As I was in the recovery room with Aria and she was eating carrots and ranch as well as ‘red chips’ (nacho cheese flavored doritos) I was talking with Dr. Trobaugh about her numbers and her progress and so forth. My mind and heart were racing from the meadow to the woods again and I was desperate for some reassurance. I think I asked her at least twice if not more, “So, you’re happy with how well Aria is doing right?” I realize now as I write this, that the voice of my very tender and fragile psyche was making feeble attempts to say simultaneously, “Can’t you just tell me that everything is going to be ok?! Can’t you just say that this nightmare of sorts is going to end really-really-really-really soon? Can’t you? HUH? Can’t you please just tell me that?” It was a pleading voice and I as I reflect on that moment in the recovery room at Aria’s bedside, it is no accident that I was on my knees asking Dr. Trobaugh these questions with my real voice and with the silent one in my mind. Dr. Trobaugh is amazing. I have to remember to tell her that when she looks in my eyes and tells me with a smile, “ I am so happy with how well Aria is doing. She is doing GREAT!” it is so reassuring to me and fills me with just the amount of strength I need to face another week. Her honesty and her ability to sense me and know my needs are tremendous. She is one of those doctors that can truly relate to people. She can take this very complicated matter and make it make sense. It is a gift and I am so grateful for her.

I asked her about the psychology of this phase (consolidation) and interim maintenance. I told her that I felt a lot lighter and more hopeful but I was concerned that perhaps this was a honeymoon phase of sorts. I didn’t want to get my hopes up too high but at the same time I needed to know that it was still ok to feel hopeful. I was a little confused still needing more reassurance I suppose. I was thinking if I was feeling hopeful was I denying the potentially grave reality of the situation? I know it is important to remain positive and hopeful and not dwell on the negative and darkness but I kept thinking about that other mother and her son’s 90+% chance of survival from his cancer. I know that his cancer is very different than the one Aria is dealing with but I wanted Dr. Trobaugh to be able to look into some crystal ball and tell me that Aria’s future was secure. She was very good to remind me to be in this moment. “For now, Aria is doing great! You have every reason to relax a little and enjoy her feeling better. She just couldn’t be doing any better than she is right now!” I was comforted by her words although not fully settled. I suspect I’ll never be fully settled. I imagine my emotional heart and my practical mind will always be at odds given certain circumstances. This is life. For now, I am trying to keep most of me in the light of positive thinking while still keeping a steady foot in the shadows of reality.

It has been a glorious week and yet I have struggled a great deal. I’ve spent days peeling layers of myself, dissecting what’s been getting under my skin and trying to find the source of my fluctuating mood. I’ve been very introspective trying to get myself sorted, which makes me look at Aria and her need to go into her cocoon. We are very much the same in this regard. I’ve come to the conclusion that I was emotionally spent this past week. I had no reserves and no emotional stamina to exercise the patience needed to raise 3 small children, run a zoo-like farm, be a humble happy mate and friend as well as be a source of creative energy for my own spirit. It isn’t that I’m asking too much of myself, nor am I trying to be any kind of wonder- woman. I simply recognize that when I have a short fuse and I bark at my children instead of modeling respectful tones and language I know my spirit is soured and needs some tender attention. I spent the week grumbling and growling over the least little things because those little things seemed overwhelming, growing exponentially larger as the days went on. Little things like Rianna trying to climb on chairs again and again 100 times throughout the day just wore me down. Aria pouting instead of using her words to express herself made me crazy. Reo digging his heels in over not wanting to try some new kind of food was infuriating. The fact that I just wanted to vacuum a room without someone tripping over the cord or crying over some such thing, just made me want to rip my hair out! None of these things in isolation is difficult, nor are they very challenging when I am emotionally charged, but when I am not, these things become very hard and the days have a seamlessness that is exhausting in their tediousness. None of these things are anything but normal parenting/ mothering challenges and they are only slightly exacerbated by Aria’s illness in my opinion. This kind of emotional drainage happened more than once before she got sick and I’m certain will happen many more times through the course of her treatment. It is just what makes life, life, but that doesn’t make it any easier when you’re in the middle of it, dealing with it.

It is not a sustainable state of mind for me and I am committed to figuring it out as quickly as possible so that I can return to my preferred joyful state of being. Hence, the need for retreating to the cavern of my mind for some much needed quiet and care. It is very clear to me that I benefit greatly from this kind of reflection and self-analysis. Some may view it as being selfish but I view it as an exercise that better enables me to be fully and sincerely present to those who need me most. I often think about the beautiful teaching of Jesus when he said, “Love thy neighbor as thyself.” For many, many years I heard that lesson ring in my head but I realized about 10 years ago that the last part of the lesson “as thyself” was something that tended to fade into the background. What I remember learning from my Christian teachings was to somehow forget self and focus on others and yet, this is in direct contradiction to what I believe Jesus was trying to convey. It wasn’t until I found the teachings of Buddhist monks that I learned how to better apply that lesson. I was learning to consider myself first and tend to my needs with gentle respect and kindness. I learned to embrace myself with all of my wonders and misgivings. I learned that to know myself in truth made me better able to know others especially my children. This is something I constantly think about as I develop new relationships and have new demands and challenges to face.

One of the many things I’m learning through the experience of Aria’s leukemia is to understand myself with greater clarity and depth; to face those emotions of mine that are unkind when they are aroused. I think the better I understand my own triggers and when I’m maxed out emotionally, I will be better equipped to face life when it gets hard and I find myself tempted to be angry with others asking questions that have no answers. Questions like “Why me?” only begs another question in my opinion which is “Why not me?” Life is both easy and hard, good and bad, fluid and turbulent. It is the perfect balance of positive and negative. I am convinced that when life seems out of balance it is I that is on ‘tilt’ and only I can right myself. I suppose if I were really together spiritually, I could say that I pray with devotion or I meditate with serenity and calm. I’m hopelessly inept at both. I don’t pray as I was taught as a child and whenever I’ve tried to meditate in the traditional sense I either fall fast asleep or my mind wanders aimlessly. Instead, I find quiet moments in everyday life to think and consider all the things that nag at me as well as those things I find praiseworthy. It is a constant practice and right now a cherished method for mental release has been this writing.
I will end this lovely bit of meditative imagery with this; Rianna has just walked into the library with Doc’s underwear on her head. Reo is running around wearing a magician’s cape trying to save his kingdom from evil demons and Aria is coming downstairs wearing only her underwear and growling like a scary lion! Life is so good! Life is meant to be thoroughly enjoyed and we are meant to be truly, sincerely, hopelessly joyful. I am convinced of that and I fully devoted to its practice.
~j

Aria's Beauty

A friend of mine recently wrote about her son finally losing his hair. She shaved it after growing weary of hair in her chapstick, drinks, food and so forth. But she mentioned being glad to have this part of the journey over with and to let go of all the baggage associated with hair loss due to chemotherapy treatment. I loved that word, “Baggage” to describe the emotional build-up around this particular aspect of the journey. I cannot emphasize enough the enormity of it. It makes everything so real and let me tell you, it is no small piece of luggage to drag around. It is most definitely a part of it and it has to be accepted on some level but getting to that acceptance, for me, took a little time and a lot of thought. I had some serious attachments to Aria’s hair and to my own and letting that go was no small feat.

This email is a wonderful description of how I opened up my baggage and went through it until I was done and could close it and put it away for good.



Subject: Aria’s beauty
Date: February 24, 2008

This is a difficult email to write because it represents my superficial side, which is something I find less than noble. I can be quite shallow in how I see the world and it isn’t anything I am particularly proud of but it is a part me and a reality that has recently hit me in the face.

One of the most blatant examples of my superficiality dwells in the cliché, “Never judge a book by its cover.” I think this statement is the biggest pile of hog wash there is! I am positively and completely drawn to book covers! The book cover is the first glimpse I have of what lies within the pages. If it is a tasty view to my eye, I am definitely more inclined to pick it up and look it over, versus something gory or sappy sweet or even generic. This is the case when I’m left to my own devices. When other people recommend books, however, I rarely notice the book cover and simply read the book because of the recommendation. It is exactly the same way with wine! If a wine bottle has a fun label, I’m likely to give it a try. If someone recommends the wine, I drink it without really noticing the label other than to remember it if I really like it. How fickle is this? I don’t know if everyone behaves this way but I’m certain that my vanity runs deep and I’m not happy about it.

My issues with vanity and superficial looks came to a head last week after posting pictures of Aria as she looks now. So many people commented about how beautiful she is and despite the fact that I know that INTELLECTUALLY, I was struggling with feeling that EMOTIONALLY. Once again, the conflict between what I know in my mind versus what I feel in my heart was raging. What’s really horrible about all this is that Aria is my precious daughter and I couldn’t feel that she was beautiful when I looked at her and this reality threw me into my own personal pit of sorrow. What an awful thing for a mother to feel! I was grieving so deeply about how Aria’s physical appearance had changed and even though I know, intellectually, that her present appearance is temporary it has been hard to watch the transition. I found myself saying, “Isn’t she so beautiful?” as if I was trying to convince myself. All the while, I was looking at her pictures and feeling so sad. She looks so different and it is sad. Last week countless people told me how beautiful she is and I’m convinced that people were able to see beyond the physical changes and I was so grateful for that. However, it did nothing for my sense of shame for what I could not see and feel myself. Still, I took people at their word and it was helpful. I was even more grateful, however, to Aria’s preschool teacher who one day last week poked her head into the car to say ‘hi’ to Aria after we had picked up Reo. Aria was thrilled to see her and had smiled only a half smile but she was obviously so happy. They chatted for a few minutes and then Mrs. Young came out of the car, looked me in the eye and burst into tears! She said, “Oh My God! She’s not even the same little girl anymore! She looks so different!” I hugged her and was incapable of expressing my gratitude for her honesty. It was as if she had released some pressure in me that I had been toting for days. She collected herself quickly and then said, “Oh, Julia, I am so, so, sorry! That must have sounded so horrible! I only meant......” I cut her off and thanked her! I told her how much her honestly meant to me! I felt validated in some ways. I needed someone else to say what I had been thinking and know that it didn’t matter but at the same time know that it was hard and sad. In that moment, I was relieved. Yet, I knew I needed to work on it. I knew I needed to change my attitude and pronto! This was not making me happy and I firmly believe that we are here to be happy and enjoy life no matter what. However, happiness takes work sometimes and boy did I have my work cut out for me on this one. Not only did I need to work on regaining my happiness but I also had to work on my issues of vanity and what a ugly can of worms that is! I found myself listening in on a conversation my mind and my heart were having. This is what they said:
“So, Aria’s beauty is only how she looks?” my mind asks me.
“Well, it’s the first thing I see.” I reply with my pitiful heart.
“Well, let’s begin there. What do you see when you look at Aria now?” my mind asks me.

I paused thoughtfully and said, “When I look at Aria now, my mind tells me that she is strong, even though she has been so incredibly weak. She is smart and funny, even though she is just beginning to smile and laugh after a month long hiatus from both. She is beautiful even though she is bloated with dry lips and skin and thinning hair. She is magical even though she has been keeping her magic to herself. When I look at Aria now, my heart screams, “Just look at her! She is so sick! She is so Sick! She is so SIck! She is so SICk! She is so SICK!!!!”

My mind calmly tells me, “Yes, Aria is so sick but you forget. Aria is on the path toward healing.”
“I know! I K-N-O-W!” my heart responds with an extra beat to roll my eyes in disgust.
“What is Aria’s beauty? Where is Aria’s beauty?” my mind asks firmly but gently. (always gentle is my mind)
“Aria’s beauty is her spirit and there it dwells.” my heart says feeling a little more peaceful.
“Seek her spirit and you find her beauty. Look not with your eyes. Find a way to sense her.” my mind told me.

I found myself saying, “you’ll know when you know” which is something I say all the time. I didn’t give it another thought. A few days later Aria showed me that her feet were dry and she wanted me to rub lotion on them. I was thrilled to be able to do this for her. It was just the 2 of us and I had been craving some real intimate time with her, especially since I had been feeling like such a piece of shit about the whole beauty thing. I was a mess! So there we were in the upstairs bathroom. Aria was sitting on the toilet and I was sitting on the floor on the purple bath mat with my legs and feet sort of around the toilet base. I looked up at her while she stared down at her feet and gently played with her ear. Suddenly I was completely overwhelmed with the most peaceful feeling. I took a deep breath and I closed my eyes. “Sense her beauty....” I heard myself say. I started to rub her feet and the strangest images popped into my mind. The first one I sort of shook off because it was so weird but it just wouldn’t go away. I imagined picking buttercup flowers and holding them under her chin “to see if you like butter or not!” I rubbed her feet some more and gently let the palm of my hand graze her toes and I imagined in my mind’s eye gently gliding my hand over purple clover flowers. They were the perfect images. They were soft, colorful, beautiful, innocent, young, fresh and real. All the things that best describe Aria’s spirit and make her so uniquely beautiful. I looked up at her and she was still staring at her feet and me rubbing them. I smiled at her and caught her eye. She barked, “Stop it, Mom!” and I burst out laughing. Oh, she was so beautiful in that moment and I was able to see, finally see, beyond the cover of her changes and the label of beauty.

I’m afraid that I’m still hopelessly superficial when it comes to books and wine,
but in terms of my daughter, I see what you see and I am happy again.
~j

On a much lighter note!

This email says it all. When dealing with hardship, one can always find the lighter side. It may take some effort, but it is always there.


Subject: On a much lighter note
Date: February 21, 2008

It is a brilliant Thursday (February 21, 2008) afternoon in eastern Washington, with the temperature hovering around 40 degrees. The snow is sparkling, the air is crisp and the sun is warm. I can smell Spring and my daffodils have sprouted scouting the friendliness of the weather. My spirits are lighter than they have been for quite some time and as important as it is to share with you the intensity of this process and its seriousness, it is equally as important to share with you the joy, the happiness and the light.

Aria has been having a GREAT two days. Yesterday was her best day by far. She was cheerful, and playful. She had enough energy to walk up 2 flights of stairs and play with Reo in our playroom. She hasn’t done this in a month and I was euphoric! Her appetite remains hearty and her cravings are tapering off and changing slightly. She’s off the noodles, bread and butter and onto hotdogs! All I have to say to that is, “ugh!!” There it is. Today, she is having another super day. She is feeling well with no complaints of her tummy, no fatigue, no malaise and just a general contentedness that I haven’t seen in some time. It is so reassuring. I am thoroughly enjoying it because I know that tomorrow everything will change again. We face the beginning of Consolidation and all that that brings. It is in plain view and difficult to ignore but it helps to see it as a bridge that I am slowly spending the day walking toward. There is no hurry to reach this bridge, nor am I in any hurry to cross it. It is simply there, solid, well worn and waiting for us. I know that tomorrow we will be upon its threshold and we will take our first steps. However, that is tomorrow, so for now I am going to savor the sweetness of today.

To change the subject almost entirely, a few weeks ago it struck me that the music I have chosen to play over and over and over again in my car is somewhat unlike me. I rarely play music in the house, preferring to listen to my own voice babbling in my head! Seriously, silence is something I enjoy a great deal and with 3 children it is a precious commodity. However, I do enjoy music in the car. I find instrumental music very soothing and calming and it is what I play most of the time when I am creatively inclined. Given our current circumstance it would seem very fitting to pull out this kind of music now but I can’t seem to stomach it. It is so odd. What I’ve been playing repeatedly for weeks isn’t heavenly harp music or dulcimers or flutes, but the raw gritty music of The Black Crowes and their “Shake your Money Maker” album; specifically the song “Hard to Handle”. I’ve been thinking of the obvious question, “why this song?” and the answer that comes to me makes me laugh. The song is, as I said, gritty and it is sexual and a little naughty. That’s the key word here. Naughty. I’ve come to realize that this song appeals to my naughty side, which has to be exercised once in awhile to balance out my nice side! Aria’s cancer has thrown me around, knocked me out and shaken me batty! I have sensed myself as a pressure cooker at times and this song for whatever reason releases some of that pressure so much so that I almost hiss. The beat of the song makes me want to run and the only reason that I can ever imagine myself running is if someone is chasing me. But this song adds some fire and spice to my wilted spirit. It ‘revs’ me up and reminds me that I am alive.

Being naughty does the very same thing and I think it is an important quality to explore. It is a full spectrum quality and individually defined to be sure. For me, being naughty is perfectly characterized in the beautiful porter (beer) I drank with my lunch this afternoon. It was a completely decadent thing to do and I loved every single drop. I understand that one beer doesn’t allow me to swim with the big fish and their martini lunches and I recognize that by their standards I’m but a guppy stuck in a bucket. However, to my standards of nice and naughty, it was a nice-naughty thing to do! To further the trend, I regularly indulge my naughty side by eating sweets! Oh, heaven, I could eat sweets breakfast, lunch and dinner and sometimes I do. Naughty me! I’m not talking about faux sweets either. I’m talking about the really good naughty stuff. The kind of chocolate or ice cream that after you’ve eaten it, you need to drink a great big glass of water. Yessirree, indulgence galore!

I know this sounds ridiculous to describe but I believe it is such an important piece to understanding how I cope the way I do, how I process as I do, how I adapt, and how I attempt to be flexible. I have to remind myself that just a little more than a month ago, I had so little pleasure in life because of what was happening to Aria. It took monumental strength just to smile let alone find the sincerity to do so. It has taken every single moment of this past month to get to this lighter place where I’m indulging my other senses while putting sadness and worry slightly aside. They are still there and I’m learning to befriend them but I’m now allowing a few harmless quirky desires to caress my spirit too. I believe it will help me feel balanced when so much of what is happening is so grossly off- scale. The need for balance is so obvious sometimes and I wonder as an adult how it has become such a struggle to maintain. I see it all around me; light and dark, day and night, rain and sun, heaven and hell, life and death, white and black and so forth. I am a creature that survives not at either extreme but somewhere in the murky middle. It is balance in virtually everything that I seek and this includes that side of me that follows the rules and plays nice-nice and that side of me that enjoys the thrill of naughtiness.

Last night, I saw the most incredible lunar eclipse. It was so beautiful and we were all watching it very closely. As the earth’s shadow covered the entire moon, Doc encouraged me to head outside and see it through his binoculars. I am so glad I took him up on it because the color of the moon was so unusual and not something I could fully appreciate looking through the living room window. The moon had a foggy orange-red tint that was dull, which was surprising in some ways. The starry display was equally breathtaking and I found myself staring upward as I have not done in a long, long time. I was standing at the end of our driveway just slightly in the road when I noticed that the fog was beginning to settle. It was a low-lying vapor like an apron to all the pine trees in the surrounding pasture. It was still and quiet. I took a deep breath and the air was chilly but fresh. Suddenly, I was completely overwhelmed by a crazy naughty urge. Right then and there I....you guessed it.....I mooned the moon!

Here’s celebrating the goodness of what’s nice and of what’s naughty!
~j

A conversation with Aria

Aria was beginning to emerge from the steroid cocoon she had sheltered in for more than month. It was marvelous to see her again, to hear her humor and to witness how she was coming to terms with everything that had already happened to her. I’m in awe of this child.


Date: February 20, 2008
Subject: A conversation with Aria

Despite a few ups and downs in the last few days, Aria is really beginning to emerge once again. Yesterday, she laughed for the first time since around Christmas. It was a hearty belly laugh too, which is music to my ears. She’s also started telling stories again. They go something like this; “Hey, mom, one day..tomorrow...my aunt and my uncle will take me to the beach for a picnic and I will say, ‘Bye Mama, I’ll see you tonight!’ Then you will say, ‘Oh, Aria, I will miss you!’ Then I will say, ‘It’s alright Mama don’t be sad, I’ll see you tomorrow.’ Then you will say, ‘yeah, I feel happy again!’ Then, I will say, ‘That’s great!’ “ This is spoken as if its a run-on sentence and almost in a single breath. Makes me smile to just think about it!

This morning Aria and Reo had a conversation on the way to school that just made my day. Aria isn’t attending school but Reo is so we were dropping him off. By the way, Aria hasn’t yet expressed any interest in going back to school. I suppose when she starts talking about it again, we’ll consider it. Right now, it isn’t even an option for another few months. She may go for the last week or 2 of school for a morning or 2 and that’s it. We’ll see. It seems like a long way away...

So we’re driving along in some really dense fog when Aria says, “This ‘frog’ sure is blocking the sun! Hey, when the sun comes out it will melt the snow. Then it will be Spring! Then it will be summer and we can open the pool! Hey, guess what? I won’t need my lifejacket anymore, cause I’m a big girl now!”

Reo says under his breath, “You sure are, Aria.”

I then add, “Hey, Aria do you want to know something funny?”

“Yeah, what!” she replies.

I tell her, “You know how in the summer we have to use sunscreen so we don’t get a sunburn? Well, you’re going to have to have some sunscreen on your head because you won’t have any hair! Isn’t that amazing!”

Reo screams, “NOOOOOOOOOOOOO! Mama, NOT AT ALL!! WE DO NOT WEAR SUNSCREEN ON OUR HEADS!!!”

I’m thinking, “Holy crap, someone’s got his undies in a wad! What is the big deal here! I realize that its ‘Mr. everything-has-to-be-as- predictable-as-possible’ so sunscreen on the head is just way too weird!” I took a deep breath because what I wanted to say was something like, “Gee Whiz Reo, what’s your problem?! I wasn’t even talking to you, so just zip it!” I know better than to add fuel to the fire, so I breathed again and very calmly said, “Reo, honey, what I said was that since Aria’s hair is falling out, she will have to use sunscreen on her head or she’ll have to wear a hat. Is your hair falling out?”

Very quietly he says, “No.”

“Do you take medicine for your ‘sissles’ (this is what Aria calls her leukemia..that’s another story) that makes your hair fall out?” I ask.

“No.” he replies with resignation.

Aria chimes in, “Yeah, Reo, you do not have sissles. I have sissles, so my hair is gonna all come out!..pause…Hey Reo, you do not have diarrhea in your butt!”

Reo says in all seriousness, “I sure don’t, Aria.”

At this point I’m laughing so hard but I have to suppress it a little, actually a lot, because Aria is being so serious and straightforward. This is the first glimpse I’ve had of her process and what a doozie!

Aria is coming back and life is that much happier for us all!
~j

Aria and Hair Loss

Hair Loss and baldness is like a name-tag that shouts, “I HAVE CANCER!” It is a visual reminder of just how sick people are when they endure this kind of treatment. It is also yet another thing one must let go and I think for many, this is very challenging. I didn’t know it at the time, but hair loss was going to be the least of my concerns. People were trying to prepare me for it but it always seemed rather dismissive and flippant. At the time, it was almost the only thing I completely understood and it was so hard to accept. Imagining Aria bald meant that I had to accept her cancer and I did but only on a superficial level. Hair loss meant that I would have to go deeper and I hated that. Hair loss meant that the world would know about Aria and that she had cancer. It meant that I would have to face their fears and learn how to reassure them as well as I was reassuring myself. It was a scary and daunting new phase that I had to face and embrace fully. I was about to become Aria’s number 1 advocate, an educator about leukemia from a mother’s perspective and a support resource for those who fear this as their own fate. I knew that the more accepting I was, the more accepting everyone else would be as well. Aria was my focus and making sure she was ok about the process she was about to endure was all I could think about.

This email liberated me from the illusion that hair loss was a bad thing. It simply is part of this process and is neither good nor bad. It is another simple example of ‘what is.’



Subject: Aria and hair loss
Date: Tue, 19 Feb 2008

As you all know Aria losing her hair has been an unfortunately difficult reality to reconcile. I have fully accepted it and I have finally found some peace. I realized just yesterday, Sunday February 17, 2008 that the thing that was missing in terms of the process of her hair falling out was ‘beauty.’ All the descriptions I had heard seemed a little harsh, despite their truth. I kept imagining vast wastelands with “clumps” of grass or “tufts” of weeds or “itchy” prickly plants and so forth. There was nothing beautiful in what I saw or in how the process was described and I was conflicted by that because Aria is so beautiful and the process we’ve been experiencing hasn’t been harsh at all. Nothing seemed to fit, until yesterday.

I’ve noticed that I can see much more of Aria’s scalp now and the texture of her hair is different. It is coarse and dry. Her hair is not patchy but there is a definite thinning going on. I have not noticed large amounts of hair on her pillowcases or on the places where she sits. I have noticed some hair on her pajamas and on her car seat but that’s it. I haven’t seen any hair flying around as we carry her or as she takes a few steps. I have noticed some hair in the comb but it is not dramatic. In fact, it seems like the downy softer hair that lies closer to the scalp is what is coming out first. I wonder if that’s the thinning process where finer hair near the scalp falls out first and then the more developed hair, falls out later. Overall, it has been an incredibly gentle process.

I was driving to Luna’s yesterday to get some more bread and I was thinking about an image. I needed an image, a metaphor, to describe what it has felt like because the wasteland imagery just was not working for me. I was driving down a road that is heavily wooded when it hit me.

Think for a moment about a live Christmas tree. Think about all the needles on the Christmas tree and imagine that tree at the end of the holiday when you are taking off the ornaments. So often, as the ornaments are removed you may notice some needles falling but it isn’t until you look at the floor that you realize just how many needles have come down. Occasionally a few needles land on your sleeves or your hands but it is always silent and gentle. It is also a glaring reminder that the tree has died and its loss of needles is simply part of that process. After all the ornaments and lights have been removed it is interesting to take a few steps back and look closely at the tree. I have always found that the tree itself is still very much intact but I can see the trunk a little more distinctly. I can also see the smaller twig-like knobby branches that are on the larger branches closer to the trunk more clearly. But the tree and its beauty and magic are still very much there.
This is Aria. Right now, she is my Christmas tree. She is full of magic, gifts, beauty, splendor, twinkle and joy. Her hair and the cells that create and hold her hair are, however, slowly dying. She remains, however, just as she’s always been; solid, grounded, continually growing and majestic. To imagine Aria, my Christmas tree, in a forest of her peers is the beauty I so desperately sought after spending so much time alone in a wasteland.
~j

Back in time.....The nitty-gritty of Aria final chapter..

This email basically documents the end of Phase 1 called INDUCTION.

There are many, many opportunities to interact with all kinds of people. Not all of these interactions go very well. In the world of serious illness for example, people are stressed, information is lacking, and sleep deprivation sets in, among a host of other emotional deterrents. This state of mind and being isn’t conducive for healthy interactions and I’ve discovered that it is under these circumstances that I tend to fall prey to the desire of blaming others. It is taxing to be this broken and have to constantly examine my thoughts and reactions, but this is must. It is the only way to heal and to strengthen the soul and this is what will see you through anything.

I’ve been reading the words of mystics, and healers and gurus and religious leaders for years and years and I have been putting their words into practice on a somewhat small scale. This experience has accelerated that practice for me in many ways and I suppose in some perverted way, I’m grateful for it. I’ve read over and over how we cannot blame others for our reactions and emotions. I’ve read how we must look deeply and examine ourselves but I’ve not encountered the step-by-step insight on how to do that exactly. Everyone is different in terms of how they process so there is no formula to follow but the email I wrote I think shows one example of how that process can happen.

As I read it again I realize that what I had written was a complete interaction. Someone said something that rubbed me the wrong way. My emotional triggers were activated and I was consumed with negativity. I arrested that downward spiral almost immediately and began a thorough investigation and dissection of myself. In the end I came up with a marvelous solution, one that I had never shared with anyone before. However, it is one that does the trick every single time!



Subject: the nitty-gritty of Aria (final chapter)
Date: Mon, 18 Feb 2008

It is Monday Morning President’s Day February 18, 2008. It is a foggy frosty morning. There is a stillness in the air that I like very much. This kind of morning is not unique this time of year and I always find myself lighting candles, writing letters, drinking coffee and spending time with my thoughts. I’ve come to realize just recently that I spend a great deal of time in my head as I’m sure most of us do. I find myself carried away with my thoughts while I’m folding laundry, ironing, vacuuming, washing dishes and so forth. Sometimes I am very present to my particular task and this is due entirely to the teachings of Thich Nhat Hanh. He offers terrific lessons about being present to the moment. For instance, he suggests that when you are washing dishes, think of nothing but washing the dishes. It is peculiar exercise to stand next to a sink washing a cup and think only of that cup and the process cleaning it requires. I find myself thinking about
water and I become mindful about whether or not I’m wasting it. I think about the soap I use and become mindful of whether or not it is polluting. I think about the cup itself and try to be mindful of its origin and maker. He stresses that one must force their mind in a gentle way, of course, to stop thinking about what needs to be done next and then after that and after that and so on and so forth. Being
present to the moment is being called to exercise mindfulness and mindfulness is the key to peace. I believe this with every fiber of my being, which is why I spend so much time in my head. I’m discovering that my interactions with others give me the greatest opportunities for mindfulness and those interactions that ruffle my feathers are the ones with the most profound lessons. I’ve had all sorts of new interactions lately so I’ve had all sorts of new opportunities to dissect my reaction, my participation, and my responsibility in those conversations that created emotions in me that were difficult. I’m amazed at what I’m learning and these reminders of mindfulness have become extremely handy when dealing with people and managing my stress.

Friday February 15, 2008 was our last day of treatment in the first phase called “induction”. If all of her tests come back as they are expected to and there are no surprises then we head into phase 2 of treatment called “Consolidation”. We don’t know much about this phase, yet. We don’t have our treatment plans or any of the new medications and so forth. We will learn all of that on Friday February 22, 2008. We are awaiting her test results from the past 2 Fridays to determine what kind of treatment we’ll be getting which is based on her level of ‘risk.’ So far, she is a standard risk case and the path for treatment is well worn and well lit. I feel very confident in the direction we are headed.

Friday morning was challenging because Aria couldn’t eat since she was having her 5th spinal tap and 4th bone marrow biopsy. I took Reo to school and was able to update everyone there. I hadn’t been back in the school for a couple of weeks so it was nice to get in touch. When I arrived home, Doc was prepping Aria for her day. She was completely withdrawn and sad. There was no spark to her whatsoever. They took off for the hospital around 10 am and I puttered around making a picnic lunch and so forth. Shortly afterward, I picked up Reo and we went on a special mission. Reo got some money and wanted to buy a new movie, so we went to a bookstore and scored a special new movie for him and for Aria. I had talked to Aria on the phone and told her that I was going to buy her a new pony movie and she was thrilled. Her voice definitely had some life to it and that was music to my ears! Reo and I arrived at the clinic around noon. It was quiet in the playroom, which I was told had been a complete zoo about an hour earlier. Aria was in Doc’s arms with her head buried in his chest. She was a little restless and looked exactly like a droopy bassett hound. Poor thing seemed just miserable.

Her procedure was schedule at 12 45. One of the child life specialists we have fallen madly in love with came in and told me about what happened while Aria was being accessed. (that’s when her port is connected to the tubes where they draw blood and where she receives medication) She told me that as usual her blood draw was sluggish until Aria was allowed to strum her guitar and then the blood flowed nicely. Interestingly, the minute Aria stops strumming the guitar the blood stops flowing. It is a curious positional thing and it happens every single time. She also told me that when they drew Aria’s blood, the color of the blood was a cotton candy pink color and kind of frothy! OK, this is where I start feeling a little wozy! Pink blood and frothy? This isn’t sounding good at all and I’m starting to feel that ol’ beach towel stomach friend of mine happening all over again! I glanced immediately over at Doc, who did not look very reassuring. I didn’t get any, “yeah, weird but it happens when such and such happens etc..” Nope, I got shoulder shrugs and twitchy mouths and perplexed eye gazes. This was not good for my stomach! I was also starting to get a headache. Stress is such an incredible full body experience. My stomach was writhing, my head was aching, and the air seemed oddly un-breathable, as if trying to get air with a sheet over my head. I was thirsty but couldn’t stomach anything to drink and my heart was racing. Pink blood?! What is going on???

Aria’s blood work came back with mixed results. Her white blood cell count was normal, which is awesome. Her hematocrit was 21, which is still wickedly anemic but she’s still holding her own. Her lipids, however, were 100 times normal. That’s right 100 times normal. So this means that her body was so saturated with fat that it couldn’t absorb any more so it remained in her blood! This is definitely a side effect of the steroid, but her diet of noodles, bread and butter, junk food and rich yogurts definitely played a role also. I was in red alert listening to all of this. I was preparing myself for a hospital stay and so forth. I was just hyper-scared and yet Doc and her doctors were completely calm. I kept hearing myself say in my head, “Pink blood! HELLO??!” Aria was placed on a med to reduce the lipid count pronto and they fully expected there to be no problems whatsoever. That was that. I tell you, these doctors, this modern medicine...I am in awe. It is just amazing to me that these people have the brain capacity to understand and what they do. You know, I feel pretty darn good understanding what a hematocrit means, even though I can’t picture what a red blood cell actually looks like, nor can I wrap my head around the idea of millions and millions of them circulating around in my body and never mind me trying to fully comprehend what a liter of blood actually looks like. No thanks! A little tube of blood is about all my little fragile tummy can take these days and I’m pretty darn sure that I want to see it a dark reddish color not some pretend lipstick color!

I was sitting in the playroom feeling proud of myself, thinking of all that I had learned in just this past month. I superficially understand the lingo and how things are pieced together. Yeah, I was sitting pretty with myself, until..until Doc and one of the oncologists began consulting about what things actually mean and what the next week will look like for us. Suddenly I pictured myself sitting in a saddle on some sturdy horse surveying the situation feeling mighty fine but then out of nowhere I was underneath the horse, upside down, still in my saddle with my hair gently raking the ground with only my ridiculous pride for company. It was an awesome moment to turn my attention to Doc. He and this other physician were engaged in ‘med-speak’ and I was captivated considering all they know and aren’t even discussing. Their ability to speak on the molecular level about the body and know in 3D fashion how one thing connects to another and another and another is just beyond my comprehension. It was a humbling moment to listen to them converse and be able to pinpoint a word here and there that I understood and know with complete confidence just how much I don’t understand. The expertise these people have is truly beyond my wildest imagination and in that moment my respect for Doc and this oncologist rose exponentially. I was flooded with a sense of trust that I hope I have earned with my own children. That trust that no matter what, someone is looking after me and in this case, that someone is a medical team looking after one of my most cherished gifts!

Aria’s procedure was absolutely fine. She required a lot more anesthesia than normal, which according to Doc had everyone looking around at one another but she handled it fine. When Doc was describing even that scenario, I was in awe. I would have been sensing the question, the concern, the “what the hell is going on with all the extra anesthesia for this kid?” energy and I would have been sweating and panicky! I know I would have been breathing deeply to prevent myself from passing out. I feel light-headed just thinking about it! I am so glad that I am not a part of that scene yet. I just don’t have the stamina for it. Doc, on the other hand, does and it is so reassuring having him there! Aria senses this, I believe, which is why she seeks him for security. This is teamwork in action!

All was well and Aria was so thrilled to be done. We were in the lobby area scheduling appointments for the next 3 weeks when I asked one of the oncologists if we had a copy of her lab work yet for our records. She got it for me and made sure I understood everything. I was very aware of the time and attention she was giving me and I was so grateful for it. I mentioned that Aria’s white blood cell count was normal and so her ANC level out to be really high too. She calculated it for me and it was great! I was so happy! It meant that Aria had all kinds of infection fighting power going on. It was wonderful and I was thrilled until.....until the doctor looked at me smiling and said, “That number is going to go down....I’m just letting you know...This is great but it won’t last.” wwwrrrriiiiiiinnnng! There it is again! In that moment I was this fabulous beautiful inflated balloon whose air had just been let out. I could feel my face droop and now I was the bassett hound! I found myself speechless and completely dismayed by what she said. I remember forcing my face to smile but I know full well that my expression was some contorted smirky suggestion that something suddenly stinks! I was pissed and bummed. It felt like I had just run a race and reached the finish line only to be greeted with, “hey that was great but needs to be faster next time!” I was trying to celebrate the end of Phase 1 knowing that Aria had done really well. She was beginning to feel better, her counts were amazing and things were going along just fine. This doctor stopped me dead in my tracks and forced me to look ahead at the next phase and know that although things are good now, they’re gonna get worse. It was weird and I was angry.

I remember getting into the elevator thinking, “Man, how could she say that? Doesn’t she get how that might effect me?” The elevator stopped on our floor with a mild bump and at the same time so did my thoughts. I stopped them right then and there. I realized that all of my thoughts were about her. I was pointing a finger at her. I was making her responsible for my reaction. I didn’t know at the time how to process this interaction. I just knew something was askew and that something was me. I told myself that my anger is my own and a valuable teacher and I must spend time with it. I’ve been thinking about it ever since and it wasn’t until yesterday, Sunday, that I finally pieced it all together. I am a s-l-o-w processor!

First and foremost, I have come to fully accept that communication and interactions are not singular. I am a full participant and therefore I bring to the situation all of my strengths and limits. My emotions and triggers are my own and as much as I would like to discard them and place them upon someone else, I can’t. They are mine, so I, therefore, must take responsibility for them. I’ve learned that after I own my emotions and my triggers, the goal is to sit with them, know them, dissect them, understand them and most importantly know that they are the very things that define me. They are my teachers showing me what I can be proud of and what still needs some work.

The first thing I had to do to get myself sorted was to peel enough layers to get to the heart of the matter. The first question I had to ask with respect to this interaction was, “What did she say that bummed me out so badly?” I just had to examine those words, not the interaction itself, not how they made me feel but the words themselves. “That number is going to go down.” Truth. No harm there. “I’m just letting you know.” Information is good. No harm there. “This is great, but it won’t last.” Shit, truth again! Drat it! All she did was speak the truth. She did her job and gave me information and what she said was honest. The problem with this interaction was me! My reaction wasn’t about her truth, it was about my fragile psyche and my inability to accept her truth. It is not her job or her responsibility to strengthen my psyche. It is her job to give me information in a straightforward and honest way. She did this very well and I am grateful to her for not only that but for the opportunity to once again examine where I need more work.

I suppose in some ways this is an example of the blame game. I could have easily stayed mad, keeping the attention on her and what she said and ignored my reaction altogether. However, staying angry and irritated is not my comfort zone. I much prefer to be happy and calm, enjoying the delights of life. This takes some effort. So, I’ve learned a little trick that I’ve never told anyone before. I’ve learned that when I begin to point the finger at someone and I have negative feelings raging through my mind and heart, I have to quickly extinguish those feelings and lighten up some how. It would be easy and so motherly to say that if I find myself pointing a finger at another, I ought to first point that finger at myself. This is very true and ultimately it is exactly what I do but it is such a matronly thing to say that it just gags me! I needed to devise a way to capture that sentiment but somehow add a little humor to it so it doesn’t feel so heavy and serious. I’ve learned that when I find myself wanting to blame someone else for my feelings, particularly when they are negative, and I want to point a finger at them, I turn that around and I give myself ‘the finger!’ That’s right! I flip myself a hearty bird and I crack up! Giving someone “the finger” is by far the most ridiculous thing I think there is. I mean, think about it! It is an angry gesture expressed through a finger flipped up with a sour face. It is so absurd that there is nothing menacing about it whatsoever, so I have found that flipping myself off creates a light-hearted environment for me to begin my work. It doesn’t excuse the point, which is to keep the focus directed on myself, my ego, my psyche and so forth, but it enables me to bring it to a level that is a lot less threatening.

People are people. We simply cannot be all things to all people at all times. We know this, I think and yet we still expect it. You know, when people are really off and their behavior and words are truly vicious and evil it is so transparent that the only emotion that is elicited is the one that says, “run away!” or “call the police, this cat’s crazy!” In most other circumstances, I have found that my negative feelings have less to do with someone else and more to do with my immaturity!
So, there it is. Flip yourselves off, you’ll feel better!
~j

A Bit of the Present (June 2009)

This is an email I wrote this morning and just sent.

June11, 2009
Aria's June Clinic Visit

What a weird few weeks. I wrote about a magnificent oak tree back on May 28, 2009. I was struggling with negativity like a bit of medieval iron chiseled, thick and weighty. I couldn't get rid of it. I has been with me since weighing heavier and heavier. However, I'm free of that burden now but before I tell you about it, let me tell you about Aria.

Aria is walking on her own much of the time. She tires easily and so I carry her a lot too but it seems less and less. Her foot turns out to the side quite a bit and she drags it occasionally, but that is improving. She is managing well and has found her sense of balance. She is swimming every day and the weightlessness of that experience is just glorious. She likes to scream "Cannonball" and then belly flop from the steps into the pool making a big messy splash. She's been absolutely exhausted by bed-time because she's been so physical.

Aria was scheduled to go to clinic for her monthly chemo and examination on June 9, 2009, but as it turns out her graduation from preschool was scheduled this day as well. So last week, I called the clinic to see if we could change her appointment and go later in the day. I hesitated doing this for days and days because this appointment was made months ago and the change I was asking for was rather last minute. I knew the clinic was going to be busy, so I sort of resigned myself to not even trying. Doc mentioned that I should at least try and the moment he said that it was like the proverbial light bulb going off. "Duh! What could be the harm in asking?" I think my hesitation, however, was also woven in that negative fabric I'd been wearing for quite a while and this can make maneuvering tricky and cumbersome. I called and left a message. The scheduling secretary called back and talked to Doc who let me know that it didn't look good. The doctors were already double booked and there was absolutely nothing available later in the day. I let it go at that and accepted that Aria would not be able to attend her graduation ceremony. I told myself, "It is what it is."

Now I have to tell you as philosophically accepting as I can be sometimes, this sucked! In the grand scheme of things, it wasn't that big of a deal but for last few weeks we'd been navigating several little disappointments. They weren't monumental by any stretch of the imagination nor were they unmanageable but it was starting to feel like 'one more thing after one more thing.' I suppose it started with Aria having to have her cast on for a lot longer than I had imagined. No big deal but at the same time bummer. Reo wasn't going to be able to come to clinic with Aria because he had school parties and fun activities planned that he also didn't want to miss. He was extremely conflicted about what to do. He worried, 'But Mama, if I'm not there with Aria, what if something happens to her? I always go to clinic!" He does and he missed very few major appointments but it was time for him to make a decision and it was hard. Again, no big deal but it was still a bummer. He wanted to be with Aria and his friends. He finally decided to go to school, miss clinic and Aria. This was a first for him and an enormous leap. I gave him all kinds of reassurance that there would be several other clinic opportunities for him and that seemed to ease his mind. Still, having Reo troubled in this regard weighed on me. I thought and prepared myself for Aria not being able to attend her graduation with her friends. Once again, Aria would be separate from her peers. This is no big deal in the big picture and yet, what a bummer. The worst part of it all for me was this strange nagging presence that I couldn't shake. I was beginning to wonder, "Am I becoming like Eeyore? Is there anything positive coming out of my mouth?" I know I try to make the best of it but man, I was starting to feel really bummed out and I hesitated mentioning it for fear of being viewed as a whiner or a complainer. Even the concern over what other people would think was starting to piss me off. I really don't care what others think and why I was succumbing to such a state of unconsciousness was baffling and annoying. On top of it all, like a nice dollop of fresh whipped cream, I would hear people say repeatedly, "I'm so glad Aria is doing so well!" For whatever reason, that sentence grew like a thorn on a pristine rose and my heart was pierced every time I heard it. Every time it happened I was aghast by a sharp poke of pain to my spirit as well as confusion over why something so innocent, so true, and so wonderful could be so painful. My emotions in this regard were starting to churn and I was beginning to go to a very dark place. It is easy to start projecting anger when this kind of emotional turmoil begins. I've heard countless times, "People just don't get it!" or "I just want to smack someone whenever I hear this or that." I understand these feelings well and it is tempting to respond in this manner but it is elementary and unsubstantiated. When people tell me "Aria is doing so well!" they are speaking the truth but it is only a half truth and that's the part that is disheartening and painful. What people aren't saying is, "Julia, you must be tired. This journey is going on and on and on and you've had no break. Your journey is also now intersecting with a lot of other people and their stories and experiences must weigh heavy." What people often don't acknowledge is this aspect of the march and sometimes it can be unintentionally invalidating. I keep imagining my clogs and they're covered in mud and slime. My tights are torn, wet, and gross. My feet stink. They have sores and peeling skin that is white and prune-like. I feel like I'm on my last leg sometimes and I can people cheering from the distance, "Julia you can still walk!" "Ain't it the truth!" I think, but as I'm slogging along it is all I can do to take another step. It isn't what other people say that is the problem. It is my inability to examine my feelings when they trigger my emotions. When people say these things that are equally true and difficult but they are offering me the gift of insight. I've now learned to bow to them deeply for their gift. Aria's wellness is profound.

The scheduling secretary called me back first thing the following morning and before she had a chance to say anything I said to her, "Jan, Doc told me the situation on June 9th. Please don't worry about it and please don't go through any fiery hoops on our behalf. I wouldn't be able to handle adding any more stress to anyone over there..." She cut me off. "Julia. Stop!" she continued, "It is our pleasure to do this. You can't miss Aria's graduation." At this point, I'm holding my breath and holding back tears. As I'm writing this, I'm in tears. The emotional ride of this journey in some ways is more intense than ever and I find that unnerving. Jan continued, "If you can make it, we have a spot for you tomorrow morning!" I burst into tears. I was so grateful that Dr. Trobaugh would squeeze us in. She wouldn't want me to know this but she put us in between procedures (bone marrow biopsies) for that day. I was completely overwhelmed. I simply was not going to allow myself to invest in the outcome either way but when it was all said and done and I knew Aria would be able to participate in graduation, I was overcome. Poor Jan was at a loss. I rarely lose my composure and I'm sure it was rather unsettling but I'm also certain it was a real reminder to her of just how fragile people can be. Frankly, my emotions took even me by surprise.

This was great news and I was so relieved but it also came with yet another little disappointment. Going to clinic on Friday meant that we would not be able to attend Reo's family barbeque picnic at his school. I explained it to him and although he accepted it, I'm certain he was disappointed and confused. I had to suppress my disappointment too. I couldn't be in two places at once and Doc had to fly to Seattle for the day so there wasn't anything I could do and I felt horrible about that. I called Tata while we were at clinic Friday morning to talk about getting together over the weekend. I mentioned being overwhelmed that we could come to clinic and not miss Aria's big day the following week. I also mentioned missing Reo's party, which was a drag. Tata cut me off, "Hey Julia, what time is the b-b-q?" I told her, "11 o'clock." She replied, "I'm there! I'm totally there!" Oh my God the water works started flowing all over again! Tata mentioned that she had worked a number of those parties in the past and there were always a few kids without family members and it was always rather heart-breaking. I was beyond grateful. Folks, I don't know what it is but it never occurred to me to ask someone to help. It never entered my mind. I can't tell you why. It doesn't make any sense to me looking on it now. I can only tell you that I didn't have it in me to even entertain what options and possibilities might be available. I was simply trying to process that I wasn't going to be able to be there. I felt completely gripped by the talons of cancer treatment and it painful and suffocating. Tata's offer was enormous. She was obviously meeting Reo's needs but she was also able to take some pressure off of me. Pressure that I wasn't really aware of until she released it. Tata is a true friend and she is family. I'll mention that she and Reo had a wonderful time. They sat under a big shade tree eating their lunch. It meant the world to him to have someone with him. It meant the world to me.

Clinic was hard. Clinic is always hard. Every 2 weeks, we've been going there and it doesn't get easier. Some days are different than others but there is always intensity, seriousness, pain, suffering, fear, worry, doubt, dread, sorrow and a sprinkling of nervous laughter and cheer. This day was no different. When we arrived no one was there. Terry, the music therapist was setting up instruments and Rianna jumped at the noise makers and shakers. Aria played for a while too. Before too long kids starting coming in with their mother's and grandmothers. There were no men around. There was little boy probably no more than 8 years old sitting very quietly with his mother. She was serious, aloof, and incredibly guarded. She kept her head down not making eye contact and her son sat very close to her. He was a strange color. It was a mixture of bark gray and army green. He was also incredibly thin. He didn't look well at all and neither did she. "What in the world is going on with them?" I wondered. I also wondered how one can not notice these people and not wonder about them. There are people like that, you know and that is their coping style. I think this may be the mother's coping style. She doesn't engage. She doesn't look at other kids. She doesn't talk to anyone. Her son doesn't play or interact. She is there for one purpose and one purpose only. Even though we don't share the same style of coping, we are all simply trying to cope, trying to deal, trying to make sense, trying to hang on. I'm thinking about her now. I'm still wondering about them.

There was also a spitfire little 3 year old that was just full of the dickens. She had everyone giggling. Honestly, glitter was squirting out of her she was so magical and fun. She has a horrible and rare blood disorder that will eventually require a bone marrow transplant but for now she is stable and has been since they diagnosed her condition shortly after her birth. Her mother and grandmother talked about just waiting for the bomb to drop. They're just waiting and watching for symptoms to show up and for her daughter to crash. The agony of that wait is an intensity that I hope I never know. They are trying to enjoy every healthy moment with her that they have because her bone marrow transplant is a 50/50 shot. Enjoying moments under those circumstances is a test of faith that is quite beyond my comprehension. But you know, this is very similar to the scars cancer leaves. The worry and the wonder may fade somewhat over time, but I sincerely doubt it ever goes away completely.

Aria's port was accessed without a hitch. She handles this all so well. We reviewed her medication with Mary, Dr. Trobaugh's nurse. Aria is currently taking roughly 41% of the full dose of chemo. When she takes the full dose her ANC tanks. When she takes 75% of the dose, her ANC tanks. So we've been playing with just below 50% to see if her ANC stabilizes. A month ago her ANC was 830, followed 2 weeks later by a bump up to 1645 and now we were waiting to see what 6 weeks on the same dose would bring. Aria's ANC came back at 800! When Dr. Trobaugh told me this, she was rather matter-of -fact. She was completely unruffled. I, on the other hand, was disturbed. "Dr. Trobaugh, excuse me. " She paused and looked at me. I continued, "You know the movie Willy Wonka and the Chocolate Factory?" She smiled and started to giggle a little. I continued, "You know that scene where they're all on the Wonka boat and there's that freak show happening all around them?" She gave me a wry anticipating, "yeah..." "Well, that's what I feel like I'm on right now!" Dr. Trobaugh burst out laughing, "Oh Julia!" she said, "I just can't imagine." We laughed and laughed. Really, Aria's ANC counts going up and down and up and down are just a freak ride that I would like nothing more than to get off of! I asked her to explain it to me because she seemed as calm as a cucumber whereas I was beginning to see snakes and scorpions and other strange creatures! Now the other really weird part about this whole thing was thinking about having to explain this to you. I was suddenly feeling all insecure about what others would think about my reaction to Aria's check-up. Again, I was letting insecurity and unconsciousness creep in. It was positively exasperating! I started sweating things like, "God, Julia. What's the big deal? Her numbers go up and her numbers go down. That's the name of the game. What are you worried about? Why are you so stressed? She's doing so well..relatively speaking. Why can't you just celebrate that? Why can't you be more positive and happy?" Shit. Right. Why can't I? That question started to haunt me like a dark shadow on a spooky night.

Dr. Trobaugh explained to me that I really needed to consider these fluctuations over a longer period of time versus week to week. She told me that she was basically thrilled with Aria's counts and said more than once that this kind of up and down was all part of it and all well within what she considered fairly normal. She believes that Aria's chemo at 41% is about right for her and was not inclined to change her medication at this time. She also expressed a slight concern that Aria's numbers could tank with a little infection or virus or what not, which is why she wasn't willing to boost her chemo up. She mentioned wanting to check Aria in another 2 weeks and told us to continue being vigilant and pay particular attention to her mosquito bites so they don't get infected. Overall though, Aria continues to do so well. She's just great! Really.

So what's my problem? Well, an ANC of 800 means that Aria shouldn't go to school. It means that she shouldn't be in public at all. It means she ought not to go to her graduation. That's why this is such a freak ride! So over the weekend I basically had to buckle down and make a decision. I pretty much had already decided that come hell or high water, she was going to graduation. But here's the rub. If Aria goes to graduation and nothing happens; no one sneezes on her, no one shows up sick and so forth, this is great. We dodge a virus bullet and it would be worth it. On the other hand, what if she goes and does end up getting some nasty virus and ends up back in the hospital, this is no picnic. This is no fun. This is scary big time every single time. So, would it have been worth it? You tell me. Freak ride!!!!

We went on our merry way. Aria was feeling pretty well until later in the evening when she had to take her medicine. Suddenly out of nowhere she didn't want to take her yellow pills (methotrexate), which is something she takes on Friday and has been taking for well over a year. This was the first time she truly fussed about it. She was so upset that she started gagging and giving the impression that she was going to vomit. As a matter of fact, she did urp up the first round of her medication so we had to give it to her all over again! Doc and I were at a loss. It was so strange and we were so wiped. We are so wiped. This has been a long, long haul. Every single Friday Aria takes 4 different medicines plus her steroids for 5 days a month. It is more than the word exhausting and having this odd tantrum was one more thing. It could be so much worse and it isn't. We are incredibly grateful for that. Aria is doing super well and we are incredibly grateful for that too. These things aren't enough, however, to get me over the hump and for the life of me, I couldn't figure out why. This was really starting to mess with me and rip me up. I was not able to help Aria through this rough patch with her medicines and neither was Doc. So we let it go for the first time ever and didn't make her take her yellow pills. Doc was extremely kind but firm with her making certain that she understood that under no circumstance would she miss taking them again on a Friday and that she would take them the following evening. Aria was a puddle. She sobbed and sobbed telling us she understood. She was completely depleted and within a matter of 10 minutes was sound asleep.

Saturday morning found me pondering my mood. I kept asking myself, "Why is Aria's wellness not enough to keep you positive and cheerful? Why am I on the verge of tears lately? Aria is doing so well! Why are you feeling so sad?" These thoughts were racing and I was beginning to feel inept, which was odd. I decided to check my email and suddenly I was flooded with bad news. I know several families, intimately, who are in various stages of their cancer odysseys and life for them is very hard. Two families expressed concern over relapses. In both instances, it would be the second relapse and one family has a little boy who has already relapsed from the same leukemia Aria has. He went through treatment the first time without a hitch, just like Aria and then 9 months after his treatment ended, he relapsed. He's been going through treatment again and doing fairly well but the fears this family faces every day are enormous. He's been enduring chemotherapy for 6 years. When I would think about that I suddenly felt this strange sort of survivor's guilt. "What do I have to complain about? Aria is doing awesome and you've only been doing this for a year and a half! It could be so much worse!" I know this to be true but for some reason I couldn't feel it.

All day long this melancholy trailed me well into Sunday when I described to my Goddesses that I felt like I was in some sort of dark well. I was surrounded by stories of others and it was such a challenge not to be taken in by their experience knowing that one day the path they travel may be one I have to travel too. I don't want their experience. Mine is hard enough! I couldn't seem to stop the descend and I felt like I was sort of going crazy. I tearfully told Doc, "I think I have reach the lowest point I've ever been." He gently embraced me and reminded me of the present, which was a perfect gift. Almost despite myself, I focused intensely on the kids in each and every moment. I didn't feel any better but I also didn't feel any worse. I knew, however, that I wasn't thinking about what if something else happens to Aria. In fact, I wasn't thinking about Aria at all. I was thinking about these other kids completely separate from Aria. I know them because of her and our situation but their circumstances were feeling separate from ours. I felt present to them and my heart ached with worry and hope.

Later in the evening I was in bed with the kids. We had just finished reading bed-time stories. I was laying there listening to the birds sing in the trees outside my bedroom. Their songs were in harmony with the gentle breathing I could hear from the kids as they slumbered. It was time to end this melancholy. It was time to understand.

I never realized I was such a visual person. Whenever I read about people visualizing healing such as healthy cells gobbling up cancer cells, I would sort of groan and roll my eyes at what I thought was fantasy or at least a nice daydream. I still sort of think that but I understand that there's a deeper layer involved as well. I was in my bed recognizing that I don't pray. At least I no longer say the prayers of my youth. I think they are beautiful mantras and do wonderful things for the soul but for whatever reason they don't come to me and whenever I've tried to conjure them they play like a piano horribly out of tune. I can't bare to hear them. So I was laying there listening and breathing. I didn't have anything on my mind that had any clarity and the chatter that often entertains me in my head was silent. I was still.

I closed my eyes and I said, "Please show me. I surrender." I had mentioned that well to my Goddesses but as I looked with my mind's eyes along my path a well wasn't what I saw. I was walking along a narrow path surrounded by a meadow when I came upon a pit. But it wasn't really a pit either. It was a sort of cave and even that isn't right. I was like well, but not really. So, what I saw was this pit-cave-hole-well-type thing that had a rope on the outside coiled loosely on the ground. Clearly, I was meant to grab the rope and descend. I started laughing a little because I'm not interested in spelunking, or rappelling or anything of that nature. Gear, ropes, clips, special clothing and crap are completely unappealing to me. But I grabbed the rope anyway and started to go down when I realized with delight that I wasn't doing anything athletic to get there. I was sitting on a swing! It was a simple wooden board and the ropes were on either side of me. I was descending as if I was on a window washer's platform, gently swinging my legs. It was getting dark and I found myself wishing for a miner's head lamp. I told myself to look deeper. I was going farther down. Below me was bottomless darkness. I was unafraid. I was completely comfortable and felt safe. I looked up and the sky was blue and I could see green grass and knew that a meadow was above me but I was rather disgusted by the image because it was so transparent and basic. I felt like I was gazing upon a Clariton allergy advertisement with the perfect scenery to make one sneeze. I glanced away and began noticing the walls. They had a sort Indiana Jones type feel to them. They were wet, dark and muddy but they were also made of some kind of foundation that looked like stone. There were depressions in the walls but no torches or symbols to see.

Suddenly, my swing stopped and I was suspended in this place. I looked down again and couldn't see anything. I looked up and it was night and the sky was starry and bright. I looked down and I could see infinite space. I looked up and could see infinite space. I was totally secure and calm. And then in a flash I noticed blue sky above me and looked up. There leaning over the edge was Aria haloed in the sun. She looked down at me and said, "Hey Mama, I just pooped on your head!" She vanished in a peel of laughter and I burst out laughing too. I opened my eyes and looked at her sleeping beside me.

I took a deep breath and closed my eyes again. I instantly saw myself back on that swing in the midst of infinite space. I was just sitting there and suddenly got a little nervous. "Now what?" I wondered. Without hesitation I saw myself on my perch and I was peeling and eating peanuts! I guffawed and opened my eyes and said aloud, "Really? Peanuts?" I sighed shaking my head a little and said, "ok!" I closed my eyes and there I was nervously shelling and eating peanuts. I was tossing the shells off my swing but they were neither falling down or up. They simply vanished. A sense of awe came over me and suddenly I noticed the walls were moving away from me. They weren't crumbling or falling apart they were fading as they moved. I was still suspended on my wooden slat in the middle of nothing-everything.

The next thing I knew with both legs in front of me as a final swing, I jumped off and walked away. I opened my eyes and looked at Aria again and realized that all this time it has been her wellness that has enabled me to descend. Her wellness was my rope keeping me safe and secure as I journeyed to where darkness and light meet. I have been able to celebrate her wellness even in the midst of being surrounded by horrible conditions. I have been present. It has been this presence and this wellness that has enabled me to understand that happiness doesn't mean only experiencing what is perceived as positive. Happiness and true joy comes from embracing what is. This is the peace I sensed while in the awe of Aria. I had to embrace some pretty dark thoughts because I am surrounded by dark circumstances but I'm ok. The light of Aria prevails and I understand with almost full clarity that come what may, her light, my light and yours will always be. ~j