Thursday, August 6, 2009

the big shed

June 9, 2008

Subject: The Big Shed

Friday June 6, 2008 I noticed Aria’s hair was starting to fall out. She was wearing pajamas made of fleece material and her hair was sticking to the shoulders and back of her shirt. As the day went on, more and more hair gathered giving her back a halo-aura fuzzy look. Whenever I gently tugged her hair a few silky strands came out and it began to sink in that she was going bald. She really was going to lose her hair. I felt sad but surprisingly unalarmed. The sadness was simply the reality of it all. The blatant reminder that she has cancer and that cancer is threatening her life. It is so real and so hard and the fact that she’s losing her hair is the visual manifestation of just that.

Yesterday I found myself unable to take my eyes off her shirt and her head. All day it seemed that the slightest swipe of my hand across her head found it covered in hair. Her entire pajama top was covered as was her pillow and any place she laid her head. It was extraordinary. I noticed that her hair started to thin around her temples giving her the typical ‘male balding pattern’ appearance. By the end of the day, she was completely bald in those areas. This kind of shedding reminded me of a cat whose fur seems to stick wherever it sits or lies down.

One of the weirdest and most unexpected things to happen was the sick joy I got from pulling sweet little tufts of her hair out. I would take my hand and in between my pointer and middle fingers I would gently pull up and out her hair. That action completely appealed to my sun-burned skin peeling perversion and I couldn’t help myself. Several times throughout the day Aria said to me, “Mom! Would you quit picking at me?!” I literally couldn’t help myself. Even as I look at her now on Sunday morning, I’m so tempted to go sit beside her and mindlessly help the shed along. I’ve also enjoyed combing her hair and watching it thin before my eyes. It isn’t coming out in clumps or chunks. It is fairly uniform and the amount of hair at any one time is a light wispy handful.

I can see the complete outline of her head now. She is bald along the temples and the top of her head is very thin but the back of her head has the most hair. Her shirt is absolutely covered in hair and periodically she picks hair out of her nose and mouth. Hair. Hair. Hair. I imagine she’ll be completely bald in the next few days and although I feel so sad about it I’m ok.

Lately, I’ve been thinking a great deal about the idea of control. This experience has been a wonderful illustration of how little control I really have. I cannot control Aria’s hair falling out in the least. It is a process that is happening before my very eyes and there is nothing I can do but watch. I found myself thinking about praying that it wouldn’t happen. I never did because it felt wrong to do so, not to mention completely futile. Still, I kept hoping that she’d be one of the lucky ones and perhaps not have to go through this part of the cancer experience. It’s so strange that all the while I hoped, I had this nagging sense that I was being absurd and trying to hold onto something that wasn’t real. Now that it has begun to happen and I can’t deny it any longer with hopes and wishes, watching it and experiencing it is so much easier.

Aria’s hair falling out and my lack of control in stopping it feels exactly like trying to stop the leaves falling from trees in autumn. When leaves change color and the temperature becomes cooler, I know it is time for them to drop. It never occurs to me to hope that it won’t happen or that it will somehow be delayed. I accept the course and know that my involvement in the matter is irrelevant. When I think of it that way, it reinforces how absurd it feels to pray for an outcome that I want but know more than likely won’t happen and so it has given me pause to consider what exactly it means to pray and more importantly, what it means to accept.

I ask myself, “If I pray that her hair won’t fall out for whatever my reasons but in the back of my mind know that it probably will and it doesn’t actually happen, do I consider this a miracle? Has my prayer been heard and answered? If I pray that her hair doesn’t fall out, knowing that it probably will and it does, then what? Has my prayer been ignored?” I hear myself say, “You can’t always have what you want when you want it.” It doesn’t seem like a much of a miracle if I pray for what I want and it actually comes to pass. Nor does it feel like a let down if I pray for what I want and it doesn’t happen. Instead, this exercise feels like I’m making the wrong sort of prayer and it reminds me in totality that what is, just is. My prayer more and more has become one of learning to accept the ‘what is’ of Life and I’m humbly reminded that I’m a beginner.

I cannot stop Aria’s hair from falling out no matter how I wish, hope and pray. I can, however, accept it. It may seem obvious to you, but this process has helped me come that much closer to understanding what acceptance means in general. There are a lot of things about being human that are hard to accept particularly when I think I have much control over the matter. I’m discovering that simplicity in life is accepting what is as it is and allowing myself to be taken from there.

This makes me think of a conversation I had with Aria yesterday when she said to me, “Hey mom, the good news is that when all my hair falls out, you won’t have to brush it or wash it!” I nodded my head but then quickly said, “Yes but Aria there’s some bad news too.” She looked at me puzzled, “What?” “Well,” I began, “it is going to all grow back and then we’re gonna have to brush it and wash it again.” She smiled and said, “Well, mom, that’s kinda good news.” I laughed and told her, “Yes it is sweetie. Yes it is good news.” Aria shrugged, giggled and proceeded to tell me, “Hey mom, you know I like my pizza cooked the right way nice and hot!”

Aria is an exquisite old soul. The miracle of all this is how much she is teaching me and more and more my prayer is a simple one of being open and willing to learn. ~j

Pooping sand!

June 5, 2008

Subject: Pooping Sand

I write a lot about my process and the heaviness of it. The joy in my life has been sometimes wayward in these writings but let me assure you, my life is joy-filled. In this process it sometimes takes a back burner and has only a vague presence to my eye but it is always there. Our children embody joy in so many ways and being in their presence always drives that reality home.

Yesterday (June 4, 2008-happy birthday Jimmy!)) I was watching Reo and Rianna play in the sand pile playground we have in our backyard. Reo was playing with a shovel running up and down the lawn slaying dinosaurs and demons. Rianna was barefoot holding a small beach sand shovel in one hand and a small rake in the other. Aria and I were sitting in my swing underneath a tree near the playground. This tree, although slowly dying, is quite magical. Much of the bark in the middle portion of her trunk has peeled away revealing how she has grown intricately twisted. There are large gaps in her twists and turns where starling have made their nests and raised their young. It is a tree full of life and my two-seater swing rests on one of her large limbs. There I sit gently swinging and swaying watching the kids play. Aria was not feeling up to playing and preferred to sit close and quiet.

Reo and Rianna were brimming with delight and their screams and shouts were testament to their happiness. Reo was fierce and courageous in his roars and grunts. Fighting demons and dinosaurs is a hefty business. Rianna, in contrast, was hardly angelic, but her shouts and squeals came with twirling dances and showers of sand tossed in the air.

My mind was wandering to earlier in the day when I had changed her diaper and it was full of sandy poop. I was mildly horrified to think that she had eaten enough sand to have it appear in her poop. Her bum was so grainy and sticky that I put her in the bathtub for a soaking rather than using scores of wipes. As I sat swinging with Aria on my lap, I watched Rianna wondering, "She isn't actually sitting there eating the sand is she?" I knew her mouth had been covered in sand, but I imagined sandy hands rubbing her mouth giving her the taste of sand. I couldn't imagine her deliberately eating it. I watched her dig her shovel into the sand and fling it into the air screaming at the confetti of sand that followed. To my amazement, I watched her sit down and shove fistfuls of sand into her mouth. I couldn't believe my eyes! I watched one hand empty into her mouth and then the other before I shouted, "YUCK!!!" She looked at me startled and smiled this blackened sandy grin while her tongue and lips started to spit and drool the whole mess out. She was thrilled and I realized that my baby daughter is eating and pooping sand. Will the wonders of this life never cease?! ~j

His name means "old man"

June 4, 2008
Subject: his name means “old man” in Swahili

He was 10 years old and this morning I read his obituary. I met his mother a while ago and wrote about that brief encounter. We were standing in the hallway and exchanged glimpses of our stories. I told her Aria had been diagnosed with ALL and we were just starting the process. She told me that her son had been diagnosed 5 years ago with an 85%-90% cure prognosis. However, that was not their experience. Instead, he would endure a year or so of chemotherapy and enjoy a brief remission of a few months followed by a recurrence of his cancer somewhere else in his body. He'd been doing that for the last 5 years. This time, she was told that it was time to say good-bye. "How do you do that?" I asked. "I don't know." she replied. She told me there was one other treatment they could try and that's what they were doing. I remembering thinking, "Right, how could you live with yourself knowing you didn't try everything available?!" I remember exchanging a look with her. I don't have any words to describe this exchange but I knew instantly that I would never forget her.

I saw her while we were in the hospital and her son was receiving outpatient treatment and I've seen her a few times since. I wasn't surprised to see his obituary but I am very......something......about it. I can't say that I feel sad, nor do I feel happy that the struggle is over or even relieved. I feel this strange sense of 'empty.' I will sit with that thought all day today. He was a beautiful little boy and I am so sorry for his family and friends left behind without him. In many ways, his mother's journey is now just beginning again. I'm planning on going to his wake on Friday and funeral on Saturday. It will be my first experience is this regard. I feel compelled to go and I know I'll learn a great deal.

I send out thoughts of peace in this moment. Peace to those who have died and peace to those who have life yet to live. ~j

Aria on Steroids May 2008

As part of Aria’s chemotherapy, she takes a steroid that completely changes her almost the moment it is ingested into her system. During the first phase of treatment she was on a very heavy dose for a month that not only changed how she looked but she became completely and utterly withdrawn. She takes a much lower dose now once a month but even then it affects her in the most interesting ways.

You may recall the noodle story and that is a typical example of her constant cravings and her incessant thoughts that ramble from her lips with a persistence that is sometimes challenging to reconcile. I’ve learned to finesse how to engage her and how to ignore her too. It would be so easy to cave to her every whim just to ease the tension and satisfy the craziness that these steroids cause, but it is my belief that this will not do her any good in the long run. It may satisfy the moment temporarily but it is imperative to remember that her behavior is temporary. The moment she stops her steroids, the severity of her behavior lessens and so to accommodate her to ease the tension for me isn’t a good idea.

I’ve also learned that trying to explain to her what’s happening and offer her rational perspectives isn’t always helpful either. Aria gets stuck. Plain and simple and no matter what I do, no matter how I try to offer reason to what is utterly unreasonable is of to little or no avail.

What I have found most helpful is clear, simple language with definite boundaries and consistency. No means no and yes means yes, for example. When Aria is on steroids, maybe is never an option. She just can’t handle it. It has to be black or white and the minute I waver on this she falters and life gets more challenging for us all. In some ways, this is the fundamental premise of good parenting in general. Children need and love structure, clear boundaries and consistency but throw in the mix some serious medication and it becomes that much more important. I won’t kid you, it requires an enormous amount of patience and I’m not always equal task. I often stumble. I make more mistakes than I care to admit but this, too, is part of the process. We are learning together and there is no other task more noble.

May 25, 2008
Subject: Aria on steroids

Let me begin by saying that Aria finished a week of steroid treatment last Friday May 23, 2008. Yes, the dreaded noodle steroids. The good news is that she only had to take them for a week and had last week off. She’ll begin another week long course this evening and then won’t have to take them again for a month. After that, she’ll take the steroids every month for 5 days, which is very manageable.

The steroids are such a wonder in terms of how they affect thought and behavior. Amazingly, she craved noodles in that short amount of time and there were hints of the obsessive thoughts and rapid speech but nothing compared to what we experienced during the initial part of her treatment way back when. The other nice difference was her ability to maintain a range of emotion as opposed to being completely withdrawn and depressed. She definitely had some manic-like moments, though, as well as some serious emotional rides that became really hard for me to deal with by the end of the week. All by themselves, they wouldn’t be a problem and in isolation they are funny but I tell you, when I was witness to her change in mood in a split second, it was shocking and disarming. When I was accused out of nowhere but time after time of not doing this right and doing that wrong and so on and so forth again and again and again throughout the day, my spirit was worn down. This is the challenge of the steroid treatment. The behavior is so different at times and so transparent but nevertheless exhausting and frazzling. I have learned that trying to reason with her is a sincere waste of time and breath. That may seem obvious but you wouldn’t believe how tempting it is to try and explain to her why her perspective is askew and why there’ s no reason to cry over me selecting the wrong blue cup. A blue cup is a blue cup isn’t it? It is easy to become sucked into the drama and forget what’s causing the drama in the first place. It isn’t that I ignore her either because that seems unfair. Her emotions are real and she can’t help herself. But I’ve learned that it doesn’t help her by me trying to convince her that she’s being irrational nor does it help me to continually engage her. Instead, I have learned to breathe deeply and listen carefully while keeping my reactions in check. It requires a great deal of patience and I’m afraid that I don’t always have what it takes.

Allow me to give you some specific examples. She started the steroids on Friday evening May 16th. The following Monday we were back in clinic for her 2 leg pokes. By the way, I neglected to mention that I saw the mother and her daughter and son I had mentioned in a previous email in clinic that morning. They had hoped to go home over the weekend but were not able to. Her daughter was in clinic checking her counts to see if they could go home then. Mom looked rested and had a smile to her. I don’t know if they were able to go home after all.

All morning long Aria was talking about McDonald’s. “Oh, Mom, I just love McDonalds. I love a cheeseburger and French fries and a root beer. Can I have McDonald’s? Please? Can I? I just love a cheeseburger, French fries and a root beer. Huh? Can I?” This was her tune starting about 7 am. I caved and told her after we finished with clinic we’d head to McDonald’s on our way home. She was thrilled but for hours afterward while we were clinic it was all she could talk about. She wasn’t hungry for anything but a cheeseburger, French fries and a root beer. We tried all kinds of persuasion but she was not going to be broken! “UGH! I’m so hungry for McDonalds. I just want my McDonalds. Are we done yet? Can’t we just go to McDonald’s?” In the back of my mind I’m thinking, “yeah right, sister, you’re gonna do what you always do, which is eat a bite or 2 of a cheeseburger, eat a handful of fries and take 2 sips of your root beer and then start complaining that your tummy feels yucky not because you’re full but because you just ate McDonalds! Gross!” I kept this thought to myself and tried to reassure her that we’d get to McDonalds when we were done. What I didn’t see coming was this.

On our way to McDonalds I had a chat with the kids to prepare them and plant the idea that I was not going to be buying Happy Meals with the toys. “Hey guys, I want to be perfectly clear about something. Before we head to McDonald’s, I want you to know that I will not be buying any toys today.” They acknowledged me and understood me or so I thought. I handed the kids their food and Aria was completely devastated that she didn’t have a toy. In tears and woeful sobs she says, “Mama, I really, really wanted to have a toy. You’re not being nice. I’m very disappointed ‘of’ you and I’m feeling mean with you.” Reo chimes in, “Yeah, we’re feeling mean with you right now Mama!” I wanted to say, “Guys, what’s the big deal about those stupid little toys that end up in the garbage anyway?” Then I remembered being a kid at our dentist’s office with a treasure chest filled with similar plastic crappity junk that I loved. I may have only played with it for that afternoon but for that time, it was the best toy in the world. I acknowledged their feelings by saying, “I know you guys are feeling angry and even a little sad. I know you are disappointed that you can’t have toys. It is hard, but we don’t always get what we want when we want it.” That’s my mantra and those poor kids are going to regurgitate and cringe whenever they find themselves hearing my voice in their heads saying it years later. Poor things. Still, I meant what I said and I was not going to be swayed. Naturally, by the third French fry they had moved on and the whole thing wasn’t even a dusty memory. Aria had eaten all of her food! I was stunned.

Tuesday morning came around and Aria was beginning to show some real steroid signs. The name of her steroid is decadron, but we call it ‘decadrama.’ Every morning it is the same routine. We are up anywhere between 5 30 and 6 30. Aria takes her medications with Doc most mornings and then comes downstairs to have a yogurt. This particular morning everything was moving along as usual with Aria sitting on the couch waiting for her yogurt while Doc was walking toward her gently shaking the container. She likes to lick the lid, getting every last drop of yogurt. So, he’s shaking the lid and all of sudden she begins to scream and cry as if she’s just stepped on a rusty nail or someone has jabbed a stick in her ear. I’m in the kitchen pouring myself a cup of coffee and have no idea what happened when I hear Aria say through sobs and wails, “Daddy, you did it wrong! You’re NOT SUPPOSED to open the lid while you’re walking! You’re supposed to sit down and open it!” “Ah-ha!, OH I see, was my first thought.” I walked into the living room and glanced at Doc who was taking a deep breath. I said, “Decadrama?” He replied, “Oh yeah!” Aria would not be consoled and fortunately the week was still young and I had all kinds of energy and patience. To her mind, her yogurt was completely and utterly contaminated so I offered to get her a new one and give the ‘wrong’ one to Rianna. Choking back her tears, she agreed. Like a switch, when I handed her the ‘right’ yogurt, she beamed and asked, “Hey Mom, you wanna know something interesting? You remember how on Monday we had McDonald’s and it wasn’t even a Friday? But I still had to go to clinic even though it was Monday and not Friday. Isn’t it interesting that I asked you if you had money for McDonald’s and you said that you did and I said yeah!! I just love cheeseburgers, French fries and a coke. Isn’t that interesting?”

It was 6 45am and this is how the day began. After she ate her yogurt she began repeating her ‘interesting’ story over and over all the while she was pacing in front me. This is the manic type behavior we saw in her. She was talking a mile a minute trying to catch her breath while staying on top of her thoughts. At the same time, her body was in constant motion. There was a rhythm to her movement; a 3 step pace back and forth with her hands tapping the couch. She wasn’t spastic, her speech wasn’t garbled and her thoughts were focused even though they were repetitive.

“Hey, mom. It is so interesting that you took me to McDonalds on Monday and not Friday. You know that my favorite food is junk. I just love a cheeseburger, French fries and a coke (yesterday it was rootbeer). I love that and it was so interesting that on Monday I ate it.” She’s saying this in a sort of sing-songy way.

“Aria, we are not going to McDonalds today,” I tell her gently.
“I know Mom! I’m just saying that it is interesting.” She says exasperated and defeated.
“Aria, that is interesting. But do you think eating junk is going to help your sissles?” I ask.
“I know Mom! I just love junk.” She begins to pout and her arms are crossed. All of sudden she screams and she’s crying. “Mama, YOU HURT MY FEELINGS!” She’s sobbing and I’m certain she feels as if she’s being punished. I tell her we need to talk about it. I pick her up and hold her while we sit on the couch. Rianna, meanwhile, senses the sadness and begins to cry also. She throws herself on the floor tantrum style. I scoop her up and the 3 of us sway side to side while I take deliberate breaths. Aria sits up all of a sudden and with my face between her hands says, “Mom, I have a secret. Rootbeer and junk is my favorite.” I sigh and tell her, “Aria, I’m all done talking about this right now.” I go to move her and she begins to cry again claiming, “Rianna just bonked my elbow!”

I put them both down and go to pour myself another cup of coffee. It is just before 8am on Tuesday and it feels heavy. Aria enters the kitchen sulking quietly telling me that she is still hungry. I ask her if she wants some peanut butter. “Oh Yeah! Peanut butter! I love peanut butter. Peanut butter. Peanut butter. Peanut butter. In a blue bowl please! Peanut butter. Peanut butter. Peanut butter. Yum!” I scoop a dollop of peanut butter into a bowl and we head upstairs to watch playhouse Disney. She’s thrilled and the whole McDonalds thing is finally silenced.

I decided to come downstairs with Rianna and sit at the computer and write for a little while. I had a few thoughts that I wanted to put down. Writing has become a little more challenging because we are playing outside a lot more often so my time to sit with any kind of focus is somewhat limited. Rianna was settled on my lap nursing and beginning to doze and I was thinking about ‘feeling overwhelmed.’ I was looking around the farm, noticing how much weeding needed to get done and feeling like I wasn’t able to tackle much of anything. I’ve said before that it would be nice to be able to feel like I was taking a bite out of something instead of always nibbling here and there. I was imagi “HEY MOM!!!” My heart came to a sudden stop with this cry of desperation coming from upstairs. “Aria! Are you ok?” I asked as I’m walking with the baby to the foot of the stairs. “Yeah” she says calmly. “I’m a piggy-piggy and need more peanut butter.” “Great!” I say, and walk with Rianna still asleep up 2 flights of stairs to retrieve Aria’s bowl to get her some more peanut butter. Rianna and I walk downstairs, put another dollop in the blue bowl and head back up. I decide to keep Rianna in my arms instead of putting her in crib because I knew the moment I’d lay her down, she’d wake up and any chance of napping again would have flown out the window. As Aria is reaching for her bowl of peanut butter she says in a sweet cheerful baby-like voice, “Thank you, Mama.” “You’re welcome my darling.” I tell her. I begin to turn when I hear her shout, “OH NO! YOU DID IT ALL WRONG! MAMA, THIS PEANUT BUTTER IS ON THE SIDE NOT IN THE MIDDLE! IT IS WRONG WRONG WRONG!” My eyelids blink rapidly as if I’m in the middle of some freaky dust storm. I pause a moment trying to wrap my head around her perception. My mind says very slowly, “The peanut butter is on the side of the bowl and not in the middle and this is wrong, oh so very wrong.” I’m exasperated but patient. I’m actually a little surprised by my patience because my creativity has been dulled by the incessant run on repetitive thoughts of Aria. “Aria,” I say calmly but firmly, “peanut butter is peanut butter whether it is in the middle of a bowl or on the side. You either eat it or you don’t.” The ‘don’t’ snapped in the air and seemed to startle her enough to refocus her thoughts. I turned and walked away and as I looked over my shoulder she was merrily eating her peanut butter.

I came back downstairs to re-read what I had written in order to jog my memory and continue my train of thought. I was considering the idea of feeling overwhelmed and how that comes to be and more importantly how to lessen its pre “HEY MAMA!” “Crickey! Can I not finish a freaking thought over here?” I’m pissed and feeling totally sorry for myself. As I stomp toward the stairs realizing that I’m about to lose my cool I yell at not quite the top of my lungs but pretty darn close, “WHAT? WHAT ARIA? WHAT?” I’d done it. I’d gone over board. I was being ridiculous reacting to the steroid driven emotions of a 4 year old. I could hear her mumbling something. I went upstairs still holding Rianna, who is by now wide awake. I’m stomping up the stairs fuming. I know full well that my behavior is negative and absurd but I am not allowing myself to calm down. I am only engaged in this nasty bit of behavior wanting nothing more than to blame Aria for my reactions. By the time I reach the playroom, she is crying quietly, “Mama, you ‘hurted’ my feelings!” I went to her and sat beside her. I put Rianna down and gently lifted Aria into my arms. By this time, I was completely calm and I said to her, “Aria, I am so sorry I hurt your feelings. I should not have used such a nasty tone. I was feeling frustrated and I’m sorry.” She looked at me and, you guessed it, she said, “I just love a cheeseburger, French fries and a coke! It is so interesting that I love junk and I do! I do. I do. I do. I love junk!”

I just shook my head and smiled. I never did go back to the computer and God knows what I was going to say about feeling overwhelmed and how to lessen its presence. Those ideas are long gone by now! ~j

The Sporting Goods Store Woman

May 22, 2008
Subject: Sporting Good’s Store woman

We went to a sporting goods store a few weeks ago to buy some baseball gear, some pants and a jersey, for Reo. I can count on one hand the number of times I’ve set foot into this kind of store being the jock that I am. As I piled the kids out of the car to head inside, I took notice that this was probably the first of many such trips and I found myself rolling my eyes and sighing. This store is in a conventional strip mall, which made me fantasize that I was in any number of towns across our nation. A sad mundane feeling flushed over me quickly as I entered the unoriginal vastness of this place. I was focused and determined to buy only what we needed and waste not a single precious moment. We found a simple grey pair of pants and a white baseball jersey with black sleeves. Reo was thrilled and I was in overdrive to get out! I don’t have a sense of panic when I’m in these corporate boxes, which have evolved so successfully into mind-numbing, rapidly dividing eye sores gobbling up neighborhood mom and pop shops and resources. No, it isn’t panic. I’m simply uninspired.

As we were vrrrooom-vvvroooooming to the check-out lane, the woman at the counter took great notice of Aria. She asked, “Do you mind if I ask you a personal question?” This was inspiring and different. I loved her immediately! “I don’t mind in the least!” I enthusiastically replied. She stammered and paused, “Umm, uhhh, Wh-wh-why does your daughter have such short hair?” “Peculiar question,” I thought. “She has leukemia.” I said consciously aware of not wanting to sound too cheerful or too woeful. The woman shot her arms up into the air as if to shout at the top of her lungs, “TOUCHDOWN!” I think I took a step back I was so stunned. She said, “YES! I just knew it! The moment you walked into the store, I knew she had leukemia. ALL right?” Was this happening? Was I making some kind of kooky connection in the middle of this humdrum bit of American sameness? I couldn’t believe it! It was wonderful and suddenly my surroundings completely vanished and all I could see was this woman.
“Wow,” stammer, sputter, sputter, “How is it you know so much about leukemia?” I asked.
“My daughter is a 2 time survivor,” she replied.
“A 2 time survivor?” I’m trying to wrap my head around that idea. “Well, what happened? How’s she doing now? How was your treatment experience? Were you at Sacred Heart? Who was your doctor?” I’m sure I asked more questions before taking a breath. She told me that her daughter had been diagnosed with ALL when she was 2 years old among other health complications. She went through treatment for 2 ½ years and when she was 5 years old, she had a recurrence. They opted for a bone marrow transplant, which she endured 3 years ago this past March. I was speechless. She went on to tell me more about their experience, all of which was powerful and positive. I noticed she was becoming self-conscious of the fact that another customer was standing behind me. I looked at him holding only a sport’s drink and said, “You’re alright.” He furrowed his brow and gave me a crooked smile. I turned my back to him not wanting him to steal a moment of this connection. A manager showed up and she asked him to help this other customer. I was grateful and with quick wit, pulled out a handful of store coupons I’d been given and asked if any of them applied. This bought us at least another 5 minutes or so. Mind you, this ‘personal’ conversation was all of 5 minutes, so any impatience I was beginning to sense, I quickly repelled.

I asked her how her daughter was doing. Her response was perky and optimistic. She asked if I was in touch with some of the support groups she found very helpful. I told her that I knew of them peripherally but wasn’t yet fully involved. She asked where we were in the process. “Aria was diagnosed 3 ½ months ago.” I told her. Her face fell and if I wasn’t so startled by her reaction, I’m certain I would have heard a dainty thud has her jaw hit the counter. “Oh!” she began. “You’re only just starting the process.” She looked tired all of sudden. “Yes” I said meekly swallowing the bitter pill once more. “It is quite a journey,” she commented, looking up and away presumably wandering to her archived memories. “It is….” I replied, my voice fading.

We looked at each other for only a bit of acknowledgment. There was little else to say. I asked again not being able to help myself, “So how’s your daughter doing? I mean really doing?” “No…she’s great. It’s been 3 years and she’s holding steady.” She said. It grabbed my attention that her comment began with ‘no’. I wondered, “Was she reading my mind? Was she able to sense that I was seeking definitive responses? Assurances like “She is positively cured. Nothing else will happen to her. This whole thing is well behind us now. I never have to experience the anxiety of the ground beneath my feet leaving me. You will also experience cure. Everything will be fine.” Intellectually, I am well aware that these kinds of assurances are ridiculous and not based in reality. Emotionally, however, I want to hear them and I, unfortunately, seek them periodically. It isn’t a sustainable thing and doesn’t help me accept the process as it is, but I do it nevertheless. I simply cannot help myself. Her ‘no’ reminded me that no one can make promises. She doesn’t know and that remains the struggle, which is everyday, waking up facing a more tangible unknown than most people have to consider. “So, she’s gonna be o.k, right?” I spit out almost as if I was choking. I knew immediately I had gone too far. I pushed it and I knew I had made an innocent mistake. She looked me squarely in the eye, “I just don’t know but I hope so.” “I’m sorry” I began, “I just want someone to tell me there’s an end in sight and that everything will be fine but you’re right, there are no guarantees and we just don’t know.” We both sighed. I said, “thank you for your question and I wish you and your family continued health and success.” “Yeah, you too.” She told me as we left the building.

In the dullness of this strip mall, I had a brilliant moment with a stranger that sparkled like a precious jewel. As I left the parking lot to enter the busy current of traffic, I said to myself, “Right. It’s rarely the place. It’s always the people that matter most and affect us so deeply.” The thought was divine and filled me contentment. I drove away. I drove forward, looking around, relishing the moment. “I have hope. I have today. I have right now.” I smiled. ~j

May 2008 Clinic visit

May 20, 2008
Subject: Friday Clinic

I thought you would like a detailed update about Aria's most recent Friday May 16, 2008 clinic experience. She began the 4th phase of treatment called "Delayed Intensification". It is the one we've been dreading because it is the "big gun" chemo and by far the worst since our first phase of Induction. There are several new medications involved that are more intense than anything she/we have experienced to date, so we are 'holding on.' It is a scheduled 8 week course if everything goes without a hitch and I've heard that 9 times out of 10 there is a bump in the road. The typical course is more like 10 to 12 weeks. We're keeping our fingers crossed but have learned to go with it.

Just as I wrote that I had this image of some white water rapids. I'm not a fan at all of white-water-adrenaline-rush-rafting. I'm much more the float quietly and gently in a nice inner-tube-pulling-a cooler-of-beer type but I do know that if ever I was to get swept up in some kind of rapid, the best chance of survival is to relax and allow my body to be taken by the river. I also understand this logic is stellar particularly if there are no rocks in the way! This reflects my general attitude, which is relaxed allowing the river of Life to take me where it wants. So far, I've been given no reason to resist but at the same time I realize this is almost purely an intellectual exercise.

Clinic days are always an incredible mixture of events and emotion. I never cease to be amazed. Aria was scheduled for check-in at 10 30am where she is weighed and measured. Her vitals are taken and her port is accessed so lab work can be drawn. After that, it is all about waiting until her 12:30 spinal tap procedure. Doc and Aria took off for clinic while I waited around the house until it was time to pick up Reo at 11:00 am. We met them at clinic about 40 minutes later. This has been our typical way of negotiating clinic mornings and so far has worked very well for us. By the time we arrived, Aria's lab work had just come back. Her hematocrit was the highest it had ever been at 29 and her ANC was way back up to 2800, which explains why she has felt so great and full of energy. It has been exceptional to see her be herself again. This is exactly what we wanted to happen before we began this phase, which will shoot her counts back down to a target of 500 - 750. It won't happen overnight, so we'll be able to enjoy her in a healthier state for a few more weeks.

While we played in the waiting area, Aria was subdued and a little anxious. She talked a lot about the food she was going to eat after her procedure (steak, soy beans and a coke). She told everyone within range that this is what she could look forward to and everyone was quite impressed and amused. It was adorable.

Rianna was very busy running here and there but is such a delight that it was fun. Reo found things to do that were amusing. They are so used to the environment now that I don't worry about them at all. There were 2 other little boys in the waiting area. One was playing with some kind of video game system. We are not at all savvy with those things yet, so I couldn't tell you what it was. There was also another little boy playing board games with one of the Child Life Specialists. I had seen him in the clinic once or twice but don't know anything about him. I'm guessing he is around 10 years old and for the first time I noticed that he had a large scar running from the middle of his head down to his neck. His hair was beginning to grow back and for some reason it caught my attention that his parents were nowhere around. I began to wonder about him.

Right around 12: 30, Doc and Aria took off to the procedure room to have her spinal tap. Within minutes of their departure, I noticed the little boy's father in the playroom wiping tears from his face, taking deep, deep breaths. It was very disturbing and suddenly all of my senses were heightened. Rianna took off running down the hall and as I went to chase her down, I saw the little boy's mother and father in a tight embrace, gently sobbing while their son stared off in the distance. It was bad news. It was crushing and I felt a weight around my heart for this family. "What happened?" I wondered silently.

Rianna and Reo went into the main playroom where the mother was pacing, rummaging through her purse to find her phone. As she was talking on the phone, she was doing everything she could to keep her voice steady. Her back was to us and she was looking out the window. I was suddenly incredibly aware of the fact that I was eavesdropping, making no move whatsoever to leave the room and give her some privacy. I felt glued to my seat and had to know what was happening to them. I felt this odd emotion that one may call ‘guilt’ but that’s not actually what it was. I can’t tell you exactly because I don’t know. It was such a mixture of emotions. On one hand, I wanted to be respectful of what was happening to them, knowing full well that it was none of business but at the same time, they were in a very public place facing something that could one day be something I have to face and I wanted to know. I needed to know. I found myself listening intently to the mutterings in my own head, "don't be afraid...don't be attention!"

Her voice broke and tears spilled and between sobs and gulps of air I heard her say, "the results are inclusive...we don't know what's up with his brain.....they're sending us to Seattle.....they don't think there's anything they can do....I need a favor....I need a pictures..good ones...have to be taken this has to be this weekend...will you do that for us?" I found my mind wandering thinking, “those tangible memories that can be held and touched and fingered...They are so precious.” I am so, so sad for this family and what they are having to face. I have not taken their fate as my own, however. We are not facing death right now. We continue to walk right through it despite its constant presence. Still, they have forced me to take a step back and stare down death once again. I feel I must examine that possibility and that reality so I can relinquish my fear of it and the illusion that I have any control over it. In its place, I have to be willing to embrace accepting its mystery and know that peace is there. I'm realizing that I can believe whatever I want and choose to believe those things I find comforting but the hardcore truth is that I don't know what death is all about and I'm discovering that I don't care.

My ambivalence is really as flippant as you may be reading it but it is also light-hearted and gentle. I don't know. I don't care and it doesn't really matter that I don't know and don't care. Death comes when it comes and will come for us all some day. That much I know. I also know that it is a natural thing happening all around me every single day. Its mystery is beyond my comprehension so my ambivalence is simply my way of letting go and allowing it to happen as it may. "Come what may....." there it is again. When I let go, when I relax, when I hold my arms out wide and say, "come what may", I am fearless. I am fully present and I trust the process without reservation. I have all kinds of spiritual and religious teachings in my head and few of them amount to anything truly meaningful. Right now, this exercise is purely intellectual because I am not challenged to understand this process emotionally yet and I am very grateful for that.

On one hand, I know there is nothing more devastating than the death of a loved one. I don't think it matters if a loved one dies having lived a full life or barely a life at all. Loss is loss and death leaves those behind in the wake of its mystery, vulnerable, yearning for answers. If leukemia should claim Aria's life, I know I would incur a wound that would never heal. I would have to search for reserves in the wild untouched places of my spirit and naturally, I hope I won't have to. This is a selfish perspective and one that illustrates I'm holding on to illusions but it is also very human for no one wants to experience the death of a loved one and yet, at some point in time, we all will. On the other hand, when I think of death itself, I have a sense of calm. The natural process of it all seems similar to the natural process of aging for example, which seems easy to accept and acknowledge. That is, once you step outside of American culture's ridiculous and dangerous obsession with youth and beauty.

It is worth saying that at this point in my life and my spiritual development, I have very few images of Heaven and sitting with God in everlasting paradise as I remember from Sunday school. That isn't to say that I don't think it might exist, I just don't see it nor do I feel it. I'm actually quite comfortable saying, "I don't know." That feels very fine to me for some reason. I don't have any sense of worry about what happens after death itself. Specifically, I don't have a single worry about what would happen to Aria if she died. Very simply stated, in my mind, she would succumb to an exceedingly natural phenomena and I would be left without her. That is the real concern. That is the struggle to my mind. When I go into that darkness and try to imagine her death it is about me not her and my ability to cope, which is what makes the process so selfish. I don't bother myself with questions of would I see her again in the afterlife. That strikes me as such a bizarre way of avoiding what I know in this present moment for something I don’t know at all. I don't want any distraction from seeing her now, enjoying and savoring every moment I have with her. I have learned to understand and embrace that every moment is a gift whether it is a moment that is full of goodness or one with negative consequences. Life is designed for us to be as fully and divinely human as we can and I am just beginning to understand how to take a hearty bite out of that idea. One of the elementary ways I teach this idea to the kids is to follow the religion of Santa Claus. "Be Good, for Goodness Sake!" It teaches them to be good in every moment not for a reward at some later date but for sake of goodness right now.

I don't see Aria dying and I’m trying not to have major insecurities about it but I am aware that others around me are having to face it. I feel compelled, therefore, to extinguish any temptation to deny that possibility and so I am keeping my examination of death a close companion these days. Like I said, it has been a powerful intellectual exercise and I'll be curious to discover what resonates and what doesn't. The vapor of death still swirls around the front door, but its oppressiveness has waned. I will carry the image of this little boy's family in my mind's eye for a long while.

Aria's spinal tap went well. She survived another anesthesia and there was relief once again. Aria woke up like she was being shot out of cannon. She sat straight up, rubbed her eyes, stretched, gave a wee yawn and began demanding her food! She was chitting and chatting like nobody's business and Doc and I found ourselves in a sort of slap-stick shpeel running in to each other to race to get her food. It was hilarious. Her spirits soared and we were thrilled. I wasn't able to have a really good Dr. Trobaugh fix, but Doc was able to have a nice conversation with her and get his head wrapped the new schedule of chemotherapy Aria must now endure. We waited for at least an hour after her spinal tap for the chemotherapy medicine to come up to the floor. It was 2 o'clock by this time and Aria had been in this clinic for 3 ½ hours already. Aria was given a huge dose of "don't fro-up" medicine before-hand since one of the new chemo drugs is supposed to make her very sick. Her medication was hooked up to her port and slowly dripped in over about 15 minutes. The new drug was red and that made Aria very nervous to see. She was visibly upset but found a way to resign herself to the process. The exam room where she was receiving her chemo was right across the hall from the main playroom. We kept the door open and ran back and forth chasing Rianna. At this time, there was another family in the playroom. A little girl, who was around 3 years old, her older brother and mom were waiting for her lab results. The mother asked if Aria had ALL and asked what part of treatment we were currently visiting. I told her that we had just start Delayed Intensification and were a little nervous about it. She nodded knowingly commenting that her daughter had just finished that phase and they were waiting for her counts to be high enough for her to start her Maintenance therapy and finally go home. "Finally, go home?" I asked. "How long have you been here?" I said noticing for the first time how completely worn out this mother appeared. She looked at me with the saddest eyes and holding back tears she said, "We live in Idaho and have been living at the Ronald McDonald house since April 1." I took a deep breath allowing her words to penetrate. They'd been living at the hospital for the last 6 weeks, which was most of her daughter's Delayed Intensification treatment. She was positively exhausted with everything about her manner screaming, "I'm wrung out!" I looked at her and said, "I hope today is your day! I hope you can go home! Enough is enough!" She nodded with pooling tears and said, "Delayed Intensification isn't so bad. They make it sound bad so you can prepare yourself, but really, she did fine. We couldn't go home because her counts got so low that she needed to be checked often." I thanked her for her encouragement. It meant a great deal to me. They were called to another treatment room and Aria was finished with her treatment so we were on our way. It was after 3 00. It was a long day.

We were gearing up for a restless night and a sour Saturday. We were all incredibly surprised and thankful that Aria slept through the night, had a marvelous appetite, waking up without debilitating leg pain and nausea. The weather was glorious and we spent the day outside playing. The kids played in the sand pile with the hose and had a blast. Mid morning Amy, our neighbor, came over and took all 3 kids to play at Tata's house. There, they jumped on the trampoline, ate candy and ice cream and played. A little while later in the afternoon we packed up and headed to Reo's T-Ball game. Aria was starting to crash and I was getting nervous. I thought she needed a nap and could use some down time. I suppose I was preparing myself for something. She rallied, though, and insisted that she wanted to go to the game. We had a ball! She refused to walk anywhere, which is very typical for her after treatment but her spirits were unwavering. It was a great day.

Sunday was very much a repeat of Saturday. The weather was beautiful and Amy came over again taking all 3 kids to play. She played with the kids for 4 hours! It was the longest break without the kids I had had in I can't remember when. I wandered the gardens, did some weeding, sat down and ate a sandwich I made for myself rather than eating the scraps from the kids like I normally do. It was wonderful and I felt restored. I touched each of our fruit trees noticing thousands of flowers and taking time to hear the buzz of the bumble bees as they danced from blossom to blossom. Life was everywhere and I was acutely aware of wanting and needing to be in tune with it. I sat under one of our largest trees I call 'grandfather black locust' and listened. It was the first time in months that I was able to silence myself well enough to hear Life around me. It was a very healing day.

Monday morning came quickly and Aria had another clinic appointment scheduled so that chemotherapy drugs injected into each thigh. I dropped Reo off to school and took Aria and Rianna straight away to clinic where we met Doc. I'm only just beginning to accept the realization that any clinic day is a 3 hour affair. It doesn't matter if it is for a simple finger poke or a full-on procedure. The minimum time requirement to be safe seems to be 3 hours at this point. Aria was incredible. I was able to place her 'magic cream' on each leg, which completely numbs the injection sight. We were taken to a private hospital room and Aria was told to pee in the potty hat, which is used for urine collection. There is nothing like being told to pee to make a 4 year old dry up on the spot! Poor thing, sat on the potty and cried, "I want to go home!! I want to go home!" This was a first and it was heart-wrenching. Doc talked about getting her something to drink and I tried to create an atmosphere that was calm and relaxed and 'homey.' I closed the door to the bathroom and turned on the television and within a minute I heard her exclaim, "I did it, Mama!! I went pee!" We were, of course, full of 'hoorays' and 'way-to-go's.' Her urine was checked to make sure she isn't spilling proteins before she received her shots. Then we waited and we waited and waited and waited. It was only about an hour of waiting, but it felt so much longer and it always does. I can't escape the desire to wonder, "What is taking so long? How much time does it take to order a drug and get it up here? Why can't they order it ahead time, since they know we're coming? Why can't it be ordered the moment we arrive and if it is, why does it take an hour?" I took a deep breath and tried to imagine myself in the pharmacy downstairs, an environment about which I know absolutely nothing. I imagined hundreds of orders needing to be filled pronto. I imagined all the staff working there. Who are they and what exactly do they do? I imagined them bustling around getting the orders together, checking them and checking them again and again. I imagined them saying while they patted themselves on the back, "Good hustle, we got this outta here in under an hour!" I burst out laughing! Of course! There is a maze to this entire process that involves hundreds of people and pages of documentation all of which takes time and careful attention. All of these people are directly linked to saving Aria's life. When I heard myself say that, I sat down and felt so grateful for every single one of those people I will never know or meet. They came to work this morning and contributed to my daughter's well-being. I know nothing of these people nor do I know anything of what they do but I was humbled to think of their contribution. "Take all the time you need,” I said as I sat with Aria waiting.

3 nurses came in with syringes and needles neatly carried out of sight. Krista was there ready to play the guitar. Suddenly, Aria was surrounded by 6 adults and she was overwhelmed and frightened. She cried, "I don't want to do this!! I want to go home!!" The nurses were talking among themselves readying what needed to be done. Doc was gently holding Aria down at the shoulders. Krista was playing the guitar. I was muttering something to the tune of "it's going to be ok Aria! You are amazing! You can do it!" One of the nurses was holding down her legs at her ankles while the other 2 quietly counted down and gave Aria the shots. Aria's eyes were wider than I've ever seen them and I think she was stunned when it was over and she hadn't felt a thing. Everyone was so positive and encouraging. Aria was composing herself and telling herself, "I was so brave!" sniffle, sniffle, "I was so brave!" "Hey Mom, can I have my dollar now?" she asked out of nowhere, which caught me off guard. She is such a little tart! I told her that she could have 2 dollars, which sent her right over the moon with delight! We had to hang out for an hour to make sure she didn't experience any kind of adverse reaction. So Doc left and went to pick up Reo, while Aria and I stayed in her room and talked. It was nice. It was quiet and I felt settled. I'm finding a groove in this process. I've fully accepted that this is our life right now and I'm eager to discover everything I can good or bad. It is an opportunity like no other for me to grow and learn. It isn't a school I would request but since I'm here, I want to be a full and present participant. This is what I think living to the fullest means. This is what I think the purpose of life is. This is living and as I've said, my purpose is to live true.