Sunday, March 6, 2011

You Just Do

This is the essay that goes with the video recently published. Here it is in its entirety.


“YOU JUST DO”
“What would I do if something happened to my child?” These words are often only whispered in the safety of a quiet mind. Yet they are universally understood as a storm of fear and worry that rages in the depth of our protective mothering instinct. We ask the question because we’ve seen the obliterating effects of tragedy. We take bewildered notice of other mothers embroiling ourselves in the pull to understand their survival and endurance all the while we push to look the other way too frightened that our lives could suffer similar fates. It is a struggle every mother knows and despite this we become mothers encouraged by an undaunted, unseen, untapped capacity.


This well of strength was unknown to me until three years ago when I heard the unrelenting knock of Death, cloaked in cancer, whispering my four year old daughter’s name. Aria. My mind roared at Death like a shattering gale, “How do I do this? How do I face you--my greatest fear?” These words were shouted toward oblivion until I heard echoed deep from within the well of myself a profoundly simple truth. “You do what you must. You just do.”

I won’t lie. This ‘just doing’ isn’t easy, nor is it always neat and tidy. Most of the time it’s downright messy full of darkness and true despair. There are moments of light, elements of promise but they are mired in the trudge through the impossible.

Aria’s leukemia diagnosis was like being bullied by an utterly disrespectful foe all too happy to shove me into an emotional-spiritual cavern leaving me alone, chilled to the bone, frightened and without any clear sense of where to go. Surrounding me were a myriad of branching paths--self-pity, empty questions, blame, unresolved anger, defiance all meandering in a unique sort of chaos. I knew to go down any one of those would lengthen my journey and so extracting confidence from ‘just doing what I must’ I was granted enough clarity to find the one way that offered the tiniest pin-prick of light. It took every ounce of strength and courage I had to take that first step through fear.

This isn't to say that I didn't rub up against any one of those other paths. I toyed with feeling sorry for myself. I was ensnared by anger. I fell into the hollow of despair and I succumbed to the enticing temptation to ask absurd questions for which there are no answers. I know now that it was impossible to walk with death as a companion and avoid irreconcilable avenues.

But Aria, now seven years old, was absolutely unwavering in her stride. She poo-poo’d at Death wearing down its resolve. She entrusted many with her most vulnerable essence to save her and they did. We were spared and together we walked through death, which often hung like a shroud obscuring the landscape of wellness. We were birthed anew and it is beautiful to be here.

It is tempting to take a deep breath, sigh and say, "Phew! Thank God that's over with! I'm glad we're done." It would be easy never to look back, keeping the darkest, coldest, loneliest parts of the journey tucked away in the dusty attic of my mind where memory after memory stacks into a hodgepodge of indistinct thought. I’ve discovered that to do so would be a gross injustice to Aria whose ability to endure deserves to be recognized and celebrated.

So it is here in the unspoiled soundness of her restored health that I can tell you this story. I realize that from the womb of an old life, I tumbled through a channel of perspective that taught me how to surrender to what I cannot control. As I pushed through the storms of misery, suffering and pain, I stand before you vulnerable in my joy, gratitude, and light.

When I look at Aria thriving and embracing Life, I am consumed with the beliefs that enabled me ‘to just do.’
I believe I can have fear and still be unafraid.
I believe in listening to the voice deep within echoing to be heard.
I believe in the Mystery of Life and Death.
I believe in my family and my friends.
I believe in Aria.
I believe in You.
And I believe in Me. ~j

Thursday, March 3, 2011

This is a video that was taken at a luncheon fundraiser for the Children's Foundation at Sacred Heart Children's Hospital. We were the featured family. I wrote the script and did the voice over work. It was our public debut and a most extraordinary experience. It's our story in 6 1/2 minutes.
video

Tuesday, February 2, 2010

Aria's August Follow-up

August 31, 2009
Subject: Aria’s August follow-up
I just want you all to know that despite being surrounded by what seems to be insurmountable suffering, we continue to be blessed. We continue to have light. We continue to take steps forward in a strange but glorious way. We continue to have hope and I say that not because I believe it or even understand what it means but because it's what everyone seems compelled to say, so I'll simply follow suit. I do that because it amuses me.

Aria is beyond my comprehension. It is as simple as that. I don't understand how she endures what she does with such light, dignity, cheer and grace. It is phenomenal and I am so proud to be witness of it and to share it with you. She is without a doubt some kind of wonder.

Aria's lab work was terrific. Her ANC this time around was 1900, which is higher than we'd like but nothing alarming. No one bothered to tell me her hematocrit. I was simply told, "The rest of her labs are great!" What is so fantastic is that she has a bright green light to begin Kindergarten on Wednesday. I have some trepidation about the whole school business and it's similarity to that of a petri-dish but I am resigned to taking that important step and going where it takes us. It is all so good.

In this note, I shall leave it at that. I shall not tell you stories about people with whom we interact and how their journeys intersect with ours or stand entirely on their own. This journey is neither all about that nor all about Aria's superb status. It is a healthy mix and I'm afraid I've been on the darker side of the cycle for the past few messages and it is time to stand still in the light a while.

A friend asked me recently, "How do you do it? How do keep from being completely consumed by it all?" I suppose the operative word in that question is 'completely'. I am neither completely optimistic nor am I completely despairing. You see, in the illusionary world of control there is but black and white, right and wrong, good and bad and such. I have come to understand that the tiny space that connects this seeming duality is an infinite realm. Like a water droplet, I am attempting to drip through this crack into that infinite space and as I do I find myself turning toward the rising sun. It is here as morning dew that I reverently remember that upon the gift of this day I am beholden to its promise. It is a brand new day and a priceless token. I glisten in celebration. ~j

Aria's August Clinic Appointment SUPER LONG!!

August 20, 2009
Subject: Aria’s August Clinic Appointment (this is super long!)

It was Tuesday August 11, 2009 at 8 50 am. Aria was schedule for her monthly lab check, examination with Dr. Trobaugh, and vincristine chemotherapy. This kind of clinic visit celebrates almost to the day when Aria began her Maintenance part of treatment, which was August 1, 2008. Aria has had this kind of appointment 12 times now with only 7 more to go. We are heading toward the finish line. I can almost see it!

I mentioned in an earlier email that at this stage of the game, it would be so easy if it was only about Aria. It isn't and every time we go to clinic I'm reminded of why it isn't. This particular clinic visit was exceptional in terms of the sheer number of people being seen, evaluated, treated and cared for. I'd like to detail it for you. I want you to see what I see when we go to clinic. It is rarely this busy but there are more often than not at least 3 or 4 other families in clinic any time we are there. This day, however, illustrates the magnitude of cancer's scope and it is breath-taking.

When we walked into clinic this morning, it was already a full house. The main waiting room was nearly full with only one love seat and 2 chairs left unoccupied. I didn't recognize any of the faces surrounding the periphery of the room. There were several support staff milling around, all of whom I knew. It was peculiar seeing that many professionals hanging around that early in the morning and I immediately wondered if something was amiss. Tuesdays are procedure days so it isn't uncommon for it to be a busy day but this seemed unusually so. Aria was checked in, weighed, measured and had her vitals taken as usual. Reo hooked up with the Play Station video system they have and was entertained from then on out. Rianna made herself comfortable in the playroom where there were several other families hanging around about half of whom I knew or had at least seen once or twice.

There was an energy about the clinic that was new. I couldn't put my finger on it. Whatever it was, it was intense. It's always intense but this was different.

Aria wanted to hang out in the main waiting area where Reo was and so I joined them while Doc and I took turns watching Rianna, who has finally matured past the stage of running helter-skelter up and down the halls. I sat down and noticed that a child life specialist was making a bee-line toward me. I immediately stood up for some reason. I suppose I was preparing myself for God only knows what. She smiled at me gently and told me to sit down but that she wanted to talk to me. She went on to tell me that there is a family in our little community who they think I ought to contact. The little girl is 4 years old and a lover of all things pony, unicorn and glitter. While she was an inpatient, many of the nurses and child life specialists commented how alike she and Aria are. She is being cared for by her grand-parents who are feeling quite isolated especially as it relates to their grand-daughter interacting with other kids. She had a horrible bone tumor for which she received chemotherapy and radiation. They were not able to spare her leg in the long run and so she had it amputated earlier this Spring. She calls her stump "pony leg". It's all so mind-blowing that I don't even how to comment about that. In any case, they want us to connect. I was given their contact information but have since found myself rolling that paper in between my fingers unable to pick up the phone. It will be a big call for me to make and will require strength I know I have but am not quite ready to muster yet. I sense this is my path even after we are done, but I wouldn't be honest if I didn't admit that I'm scared. I've never seen a little kid without a leg before and certainly the tie-in to cancer adds a whole layer on top of the amputation in general. Osteo-sarcoma is a bad cancer so there's a lot anxiety around that on top of the grief related to loss and what they have yet to undergo. There are many positives to this story and this family and so far things look good but the future holds a vast array of unknowns and this is always difficult.

As we were finishing our conversation, a young girl roughly 14 or 15 sat down in a chair beside us. Her mother, maybe grandmother sat on a bench next to her. The child life specialist turned her attention to this family and I turned my attention to a huge box of blueberries I had brought with me to share. Aria and Rianna were thrilled and began diving in. I couldn't help but overhear the conversation that was happening right next to me. The young girl had finished months and months of grueling treatment, for what I don't know. She started having leg pain and was evaluated but nothing showed up on any films. She said, "I was able to have some fun this summer, but then my leg really hurt where it all started before. I had a hard time walking so here I am again." She looked scared. She looked like she was still in the throws of steroid treatment, although I don't think she was. Her hair had been growing back and she had a sparkle in her eye. Her grandmother-mother was sitting beside her playing with a straw in a large cup of soda. She was fidgeting in her seat, not able to get comfortable. They were here once again facing unknowns. I've said this before, not knowing is infinitely worse than knowing. It was then that I noticed I had been popping blueberries into my mouth one after the other and chewing on them like a squirrel nervously nibbling an acorn in the surroundings of a city park. I don't think I was breathing. I looked over at Doc who was staring into space leaning forward with his elbows on his knees and his hands on his cheeks holding his head. He was far, far away. I asked, "Hey Doc. You ok? What's on your mind?" He blinked and looked at me sitting back. He let out a deep breath and ran his fingers through his hair. He sighed and said, "Oh honey, I'm ok. I'm just thinking about...this place...Clinic...Aria." His sigh was the sound of utter exhaustion and as he rubbed his eyes and blinked several times, he looked at me, held my hand and there we sat.

I looked across the room and there staring at me was another young girl about 15 or 16 I'd say. Our eyes met and lingered. She didn't avert her gaze nor did I. We sat there looking at each other for what felt like a long time. Her eyes were dark brown. She wore a little make-up and clothes purchased from one of several trendy fashion outlets that cater to teenagers. Her hair was long and silky and I wondered how much time she spends fixing it. I wondered if she was new here and was thinking about what it was going to be like to lose it for a while. She looked new. Her mother looked new. They had 'the look' and I know that look well. It was then that I realized she wasn't smiling, neither was her mother or who I presumed to be her mother nor another girl that was with them, about her age. A friend? A sister? I didn't know. Rianna bounced up and ran out of the main waiting area down the hall into the other playroom and I followed her passing this young girl as I went. She looked at me the entire time. It was if she couldn't take her eyes off of me. Suddenly I was totally self-conscious, thinking, " Am I smiling too much? Am I not sober and somber looking enough?" I know it sounds crazy but I remember those early days staring at other mothers, seasoned pros, who could be in the waiting area and playroom laughing and smiling with their kids. Thoughts would emerge screaming, "What the hell are you smiling at? Your kid has cancer! What's funny here? Why are you laughing?" I remember being dumbfounded by their treachery. They were supposed to be miserable and terrified both inwardly and outwardly. Their comfort and ease was not a comfort to me. Fortunately, this did not last and I found myself early on drawn to those who could smile and celebrate the life of the moment. When I walked by her, she literally looked up to me watching me. I slowed down to look at her deliberately. I gazed into her eyes and said, "Good morning." She gave me a silent faint smile and nod. Her name was called and she jumped with the force of a cannon out of her seat and she was gone. Was she beginning the journey? Was she coming around for another go? Was she waiting to hear news about the outcome of her journey? I don't know but she's in my head.

I went into the playroom and there was a Eastern European family with an interpreter playing with toys and watching a movie. They have 7 children in all. I wrote about this family once before. The mother and I stared at each other in the procedure room a few months ago. While Aria was waking up from her procedure and God only knows what was going on with this mother's baby, I stared at her not able to take my eyes off of her. I could only see her eyes since she was gowned and masked and she matched my stare for a moment or two. The intensity of her as well as watching her surrounded by professionals caring for her baby was like nothing I had ever experienced before. It was incredible to see them all playing in the playroom. Her baby is a gorgeous meaty little guy full of smiles and raspberries for his mom and dad. They were beaming and everyone's eyes were full of sparkles and twinkles. This is one of the most beautiful families I have ever seen. They were completely pre-occupied with themselves and with their interpreter. They made little to no eye contact with anyone else and made no effort whatsoever to interact with any of the other parents in the room. Their kids also kept to themselves but they were playful and at one point they set up chairs in front of a small tv so they could watch a movie. My kids joined in and it was the cutest thing to see these kids huddled together sharing in such a common pleasure. The parents looked relieved and I was thrilled to see them and have a sense that they are out of the woods. There is hope.

There was another family in the playroom. A little boy I had never seen before and his mother, grandmother and older sister. They were guarded and unsocial. I wondered if they were new. The grandmother sat beside me but her face was uninviting and stern. She stared distantly and I wondered where her thoughts were taking her. I asked her, "How old is he, your grandson right?" She turned to me furrowing her brow, "He's 2." He came over to her offering a plate fake corn and fried eggs. She took it silently from him. I said, "that looks yummy!" He smiled at me and went back to the kitchen to finish cooking. She asked me, "Is one these yours?" I replied, "3 of them are and my daughter, Aria over there is being treated for leukemia." She nodded with little expression and said, "Yeah, he's got a hereditary blood disorder. That's why we're here." She didn't elaborate and I didn't ask. I don't know if they've been coming to clinic since his birth or if the process is new and 'just the beginning.' I just left it hanging there. She got up and sat next her daughter when that seat became available and I went back into the main waiting area to grab my bag I had left there.

I noticed a young girl maybe 10 or 12 sitting in the corner with her mother. They'd been sitting there the entire time but it was only now that I really saw them. They were in shadow. They were completely walled off, eyes down, shut off from their surroundings. It was so strange to see them and yet not be able to look at them. It was like my gaze was unable to penetrate the fortress they had erected. I bent down to grab my bag and Rianna came bounding toward me. I picked her up and sat down. We played for a moment or two and when I looked over at the corner, this young girl and her mother were gone.

Aria came wandering back into the waiting room wanting to watch cartoons that were on the television. There was a little boy, probably 8 or 9 playing in the faux boat that is the main attraction in this room. He found a life preserver and was hanging it from his neck while his mother took some pictures. He was bouncing and beaming. I know this boy. He has finished his treatment for ALL and is in the process of simple follow-up. He looked terrific. The picture of health he was and probably is. His mother was completely relaxed, somewhat reserved but full of smiles. They are thoroughly enjoying 'the other side.' I couldn't be happier for them. I was bursting with joy watching him play. There's hope. I see it in him. I see it in Aria. I know it to be true.

They got called away and as they were leaving a young Indian girl probably 15 sat down with her father beside her. She was radiant and one gigantic smile. Her father was too. "What hurdle had they just cleared?", I wondered. Her hair was just beginning to grow back, which seems to me the tell-tale sign of turning a corner. Being bald is being in the throws of illness but hair growth rings of healing and cell regeneration. I don't know what it was about this girl and her father. The only word that springs to mind is, Peace.

At this time Aria was called away to have her port accessed. We'd been waiting a long time but I can't tell you how long exactly. I've stopped looking at clocks and I don't own a watch. I haven't worn one in over 20 years. As I was watching Aria and Doc leave the waiting area with Rianna on my lap and Reo playing the video game once again, my gaze wandered to the door and through it came a young girl in a wheelchair. I have no idea how old she is but my guess is somewhere between 10 and 15. She was petite and beautiful. The left side of her face was slightly fallen due to what I don't know. I can only guess some kind of brain damage/injury as a result of her treatment, but who knows. Her hands were secured by black straps along the armrests of her wheelchair and her legs and feet looked deliberately placed. The woman pushing her wheelchair, I guessed to be her mother, made no eye contact with anyone in the waiting area. I was watching her. It is amazing to watch someone scan a room but not really look. This pair looked like seasoned pros. I wondered, "How many years have you been coming here? How many years did you look at the countless faces coming and going? When did you stop looking and why? What happened?" Everyone has a story. I wondered what theirs was. I can only conjecture but looking at them I suspect their journey has been a long one. She wheeled the young girl out of the waiting area down the hall and I never saw them again.

As I watching them go through the large automatic doors that are always open and lead to the main hall, exam rooms and playroom, my gaze found a young man. He was sitting in a chair with a set of crutches beside him. I could see just a little more than his profile. He was completely hairless and looked to be 17. Yes, that would be my guess. He's a junior or senior in high school. I could tell that he was tall and gangly, only just beginning to fill his body in when my thoughts wandered to my nephews and their friends. Those thoughts became too much and I found myself tearful taking deep breaths. I looked at him again and he was staring detached to his surrounding at some spot on the floor. He wasn't blinking. I never saw him blink. He just stared. I don't think you can notice someone like him and not wonder, "What has your journey been like? What have you had to endure for so young a person? How different you are from your peers at an age when different couldn't be a worse thing." This boy's face is in my mind's eye. He haunts me a little. He puts me in a shadow of great humility where I find myself only able to kneel in gratitude for all the blessings I have been bestowed. I sense that he is a great young man.

Aria and Doc joined us in the waiting area a few moments later. Doc was taking deep breaths and sat on the couch beside me in a bit of heap. He raked his head again and said, "Mary mentioned that there is a crisis happening so things are probably going to be delayed a little." I didn't know how to process this information. I was dumbfounded and noticed that I was nervously picking at my hangnails when to my relief Aria announced that she needed to use the potty. The bathrooms are outside of the clinic and down the hall. Leaving the clinic and hearing the doors close behind me is like stepping outside for a minute to catch my breath. The hallway is a peculiar portal bridging the world of cancer to the world of normal and it is of some comfort to wander there a moment.

When we came back into the waiting area I looked down the hall and just next door to the playroom in one of the isolation rooms I saw several nurses hustling to and fro. I saw support staff, child life specialists, and so forth mingling around that general area. It was weird and I immediately wondered if the crisis to which Mary referred was happening in that room. I was walking across the waiting room going to sit down when I saw the young man grab his crutches and stand. One of his legs was gone. In bearing witness to his fate and the suspended reality that it brought in that moment, I can't remember which leg was amputated. I paused a moment and thought, "What has life been like for this kid?" I silently bowed deeply to this young man and his family and friends.

Doc was in the playroom with Rianna. There is a large circular window in the main waiting room that peeks into the playroom, so I could see them. Aria wanted to watch cartoons so I sat down beside a woman I was thrilled to see. I haven't seen her and her son for a long time. It's been months and months. We had a wonderful conversation and I asked her to tell me her story again. I know that her son, who is 8 years old has a rare malignant tumor that has invaded the underside of his face; the extent of which I don't fully understand. They have been coming to clinic for 5 years now and have just finished their second round of chemotherapy and radiation. After his first course of treatment he was able to enjoy remission for, I think she said, 2 years. They had to come to clinic repeatedly for follow-up and countless scans to make sure that the cancer wasn't growing back. That's seems a peculiar word to use to describe cancer, "growing" but that's the image that comes to my mind and you know for quite some time now I haven't been able to look at those toy "sea monkeys" for that reason. Those weird coral growing things that emerge after dropping a colored tablet into a fish tank of water reminds me too much of cancer 'growing.' After 2 years or so she said she noticed that his eye was bulging and she 'just knew.' He finished another year or more of chemotherapy and radiation and was preparing for a grueling surgery to remove what was left of his cancer but fortunately that didn't have to happen. They can see no residual cancer. There's nothing left to remove surgically, so they were in clinic for scans and follow-up. She's cautious in her excitement and enthusiasm. She's been through this once already. Not being able to see any residual signs of cancer doesn't mean much to her anymore. That's not where she puts her hope or her faith. She is completely resigned to the fact that this is their normal. They'll come to clinic year after year after year and face whatever comes down the pike.

I sat there gripping my seat, listening to her. Finally I asked, "How do you do it? How do you live in the moment? How do you keep yourself from tumbling head over heels down that rocky road of anxiety knowing that for you guys it's all up in the air?" She leaned her head back, laughed, sighed and began, "Oh You Know! You just deal with it. You just take it as it comes because what else are you going to do? You deal with people not getting it and you go day to day." That's it in a nutshell, isn't it. She's been doing this for so long and has seen so much that she has whittled it down to fit into a nutshell. I am in complete awe of her. She has a light about her, a brilliance, a genuine joy and pleasure. She is truly able to enjoy the moment and I admire her a great deal for it. It was all I could do not to crawl into her lap a moment and try to be infused with her strength. She paused a moment and looked in front of her and said, "It's hard though. You know...people not getting it, not understanding that even though he's done with treatment there's always this "What if" hanging around. God I hate that!" She looked at me and we both burst out laughing shaking our heads. It was so weird to be sitting with someone who knows that we could easily crumble in sorrow or laugh. We both chose to laugh and it was healing solidarity at its best. I asked, "Do you really think people don't get it?" She paused thoughtfully, "Oh I don't know. I suppose some people do. I just get so tired of explaining it all the time that I find myself just saying, 'oh he's fine. He's good. Yeah, he's doing well. " I cringed. I know what motivates that. It is so much easier to spare others the details. It is less fatiguing. It is self-preservation at its best and after 5 years of singing that song with no finale in sight, who can blame her? I bow deeply in my respect for her and the others just like her coping as she does.

She said to me but also to the no one in particular, "Don't you get tired of people always asking how you do it?" I looked at her and ours eyes met. I wanted her to tell me more. She shrugged and said, "You know, we just do. It's like people trying to turn it around on me as if I'm the one going through it. In reality, he's the one in the hospital bed. He's the one losing his hair. He's the one taking all the chemo. He's the one missing school. He's the one missing out." I just listened. She's only recognizing half the story to my mind. She's the one carrying the load of such a diagnosis for her son. She's the one deflecting stares, wonder, whispers, and fear to spare her son the additional grief. She's the one sleeping on a couch or a chair in the hospital with him. She's the one comforting him during all the invasive procedures he's had to endure. She's the one missing out too. She's not the one who has to endure the direct effects of her son's cancer but she is certainly not unaffected. It is a journey we share and we do it because we have to. It is as Life dictated and we go where we are shoved. It isn't always pretty but that's how we do it. That's how you'd do it, too.

They got called away and I didn't see them again. I hope they enjoy a long, long healthy remission. Within a few minutes of their departure a dear family entered the waiting area. Their story is very hard for me because they are living what we all want to deny could happen. Relapse. Their 8 year old son was diagnosed with ALL when he was 2 or 3. He went through 3 years of treatment and enjoyed 9 months of remission until he relapsed. They were told that a bone marrow transplant would be his best alternative but they were unable to find a match in time. So they have been going through another 3 years of treatment and have only 5 months to go. What makes this part of the journey so hard to face is that the level of chemotherapy he has received already has reached the total amount of medication allowed for one's life-time. This is a common problem but fortunately people can place their hope in the fact that new drugs are being developed all the time. Still, the toxicity levels in this boy's body have unknown consequences. So, as he is enjoying remission the second time around, there are side effects that they have yet to face. The journey continues.

When I saw them, I raced to the mother and we embraced. We are two very human mothers navigating this strange and scary cancer world. I look to her as a mentor. "What brings you here today?" I asked. She proceeded to tell me that they were on their way to enjoy a week long Holiday get-away that was planned and reserved a year ago but her son had an elevated temperature this morning and his line site was "weepy" and didn't look good. She worried that maybe he was getting an infection and didn't want to be on vacation and have him suddenly get really sick. So on the morning they are ready to take off, they come to the clinic knowing full well that their trip could be cancelled and they'd be spending some time in the hospital instead. This young guy has 2 older brothers who have seen and endured more than most people care to even think about. She mentioned that 5 1/2 years ago they planned this exact same trip and had to cancel it on the eve of their departure because her son got sick out of the blue. "What are you gonna do?" She sighed shrugging her shoulders with a special kind of resignation. She then said something that was like a cool breeze coming through the door. "I'm sorry. It will be fine. Whatever happens is supposed to happen. I know this. I'm just processing it out loud." I thought, "Thank you! Thank you for being real about this!" It will be fine. It has to be but at the same time it has to be alright to be disappointed, angry and perhaps even resentful. Cancer has been the predominant feature in this family's life for a lot longer than most people and layered on top of it are all sorts of hardships and frustrations that don't get any easier to accept and cope with no matter the depth of experience. I told her that if it was possible for Aria to give her son some of her ANC counts to boost his, she would and so would I! We laughed and she smiled. I told them that I hoped everything would work out so they could enjoy their trip. At the same time, I couldn't escape the thought of what a load to bring along with you just when you thought you could leave it all behind for a little while.

I went to join Rianna and Doc in the playroom and as I walked closer to the isolation room that was just next door I had a sense of an invisible force field preventing anyone other than staff from passing near this room. I couldn't help myself from taking a look over this barrier, this mystical line that was drawn by a host of incredible professionals who were casual but deliberate, surefooted, focused, and highly protective. It felt a little like gazing upon a lion pride where united mothers were fiercely guarding and sheltering one their own with nothing more than body posture and a look in their eye. I could see that the blue was drawn shielding curious eyes from whatever crisis needed addressing. There was a nurse working quickly and with an intensity I had never seen. She normally works on the inpatient unit but was floating through the outpatient clinic this day and I'm sure her skills for coping with kids taking a step closer to the veil instead of away from it were of great comfort to everyone involved. It may be all in a day's work for these people. It is what they are trained to do, but from my vantage point I was witnessing the collective spirit of people called to save lives. What an incredibly privilege it is for me to interact with these exceptional people.

Rianna was playing with musical instruments and I sat down in a chair to watch. As I did another family came into the playroom to find a place to settle in. The mother is young and lovely. She's bright and hardened. In some ways she reminds me of a doe who appears skittish but is in fact resourceful, quick, strong and knows the terrain like no one else. I know her only peripherally despite that I've seen her a number of times. She is heavily guarded and I don't blame her. She has a baby and a daughter at least a year older than Rianna who has a cancer that seems to me beyond the imagination. She was pregnant when her daughter was diagnosed and had her baby shortly thereafter. I've never felt comfortable asking her to tell me her story. It seems complicated, layered with intensity that I don't know that I'm fully capable of understanding or processing.

What I'm about to tell you is hard to say. I can't figure out if I'm completely superficial, just plain stupid or both. You see, her daughter frightens me on a level that is unique only to this experience and it is all about how she looks. There's something about her that is oh so terribly wrong. In some ways she looks like any other kid with cancer. She has a completely rounded face due to steroid treatment I assume. Her belly is distended perched upon skinny little legs that give her overall body a completely distorted appearance. Her hair is wispy and coarse. Her eyes know too much. She has rail thin arms that match her legs. Her skin is an unusual color something like a suntan mixed with tinges of green speckled with bruises. Her personality is bottled and suppressed by what I can only imagine to be countless kinds of medication. In no way does she resemble a typical preschooler and every time I see her I gasp because her appearance is so unique and harsh and based on that alone I conclude that her disease must be phenomenal. It is almost impossible for me to look at her and then her mother and not feel this incredible sense of, dare I say, pity? I don't know if that's what it is per se, but God, I feel this weight whenever I see them. Their journey seems to me a nightmare where every step is an enormous push through waist deep mud threatening to slow the progress or swallow it altogether. They represent to me the extreme of how horrible and brutal this disease can be and become.

This mother is nothing but a marvel. She is, in the truest sense of the word, an inspiration. I want to know her so badly. I would love to share with you her story. I sense we could all benefit from an infusion of her; her strength, her commitment, her nurturing, her tenacity, her devotion, and her infinite wealth of love. I loathe that part of me that groans with fear when I look at this sweet and innocent little girl. I want to beat that part of me senseless. I really do. I have no use for that aspect of myself other than to recognize that I still possess a great deal of fear. I am working tirelessly to banish that and it helps to write about it but it also requires a spiritual and intellectual commitment too. As I sat there watching them, I wanted to scold myself. I wanted to be cross and judgmental of who I am but that's no motivator. Instead, I told myself to be gentle. I told myself to sit up properly and take a deep breath. I told myself to look, to really look and see. So I did.

What I saw wasn't an angel. This isn't a Hallmark movie, this is an oncology clinic! I saw a little girl, cooking in the kitchen, playing beside other children, skipping on occasion and feeling pretty darn good. Her knowing eyes have the beginnings of a twinkle and her step has a hint of a bounce. Her mother held her and kissed her all over, cuddling and nuzzling her, loving every fiber of this perfect little person. She must field all kinds of horrifically and painfully moronic questions in addition to deflecting chronic stares that are riddled with curiosity and fright. How she does it is a complete mystery but watching her with her daughter and her son made me realize that when she's with them, she is home. It is exactly the same for all of us blessed to have children in our lives. When we hug them, love them, watch them and enjoy them, we step a little closer to our true selves. This is the gift they bring unconditionally and in abundance no matter the circumstance. This little girl is every day fighting for her life and the hell that has been paved along the way is unjust but I sense that she is a bridge connecting what we think we know and want to know with what we can not know. She narrows the gap between what is superficial and Divine. I am less fearful now and I am deeply humbled to be present and one among many along the sidelines of this beautiful spirit's odyssey.

We were finally called to be seen by Dr. Trobaugh. I know, it's exhausting! On our way to the examination room, we briskly passed the isolation room where 'the crisis' had been happened. The force field was down and I sensed that something had changed. Things were moving in a different direction. I can't really describe how it is that I can be walking at what I think is a normal pace but feel like life is happening in slow motion all around me. For instance, we had to walk in front of the door to this isolation room and naturally I looked in. It takes about 2 steps in all to walk from one side of the door to the other. To cross this view is an instantaneous experience and yet it didn't feel that way at all. As I looked in, I felt as if I had stopped in my tracks even though I know I didn't. There on a gurney lay a young person, who I think was a little boy but I couldn't be sure. His eyes were closed and I could only see his head, which was bald and a bit of his neck. He looked incredibly still. He was gray and for moment I thought he was dead. I quickly reassured myself that if he had died, they would have covered him. So I was relieved to think that he was still among us.

The exam with Dr. Trobaugh was casual and light. She is so pleased with Aria. Her ANC was slightly elevated just above 2100 but she thought this was due entirely to the fact that we stopped her chemo for a few days following her ER adventures. Dr. Trobaugh predicts that it will level out in a matter of a few weeks. We are to continue our 2 week follow-up schedule. We asked about flu season and swine flu specifically. Dr. Trobaugh took a deep breath. She didn't want to appear alarmed because there isn't much we can do at this point. Hyper-vigilance is all we can consider but I won't kid you. It is a frightening thought with school beginning just 2 weeks from now. For now, Aria is awesome! We are so lucky! We are so blessed.

As we were heading back toward the playroom to wait for Aria's chemotherapy, I noticed that the little boy on the gurney in the isolation room was gone. Where they took him, I have no idea. What happened exactly is really none of my business but there it is, swirling around, hanging out in my consciousness forcing me to be aware of my surroundings in this world of cancer. A part of me leaps for joy about Aria. I sense that I'm doing cartwheels inside but I don't let any of that show. How could I?

I went to the snack basket that's in a little area in the hallway where there's hot water for tea and coffee, a small refrigerator with juice and milk and a variety of mostly non-nutritional snack foods. I'm not hungry. I go there because it's there and it's something to do. Standing around the coffee maker is the mother of the little boy with relapsed ALL and they are still waiting for lab results to determine if their much anticipated vacation is go. She is standing with another mother I've seen a few times. I can't remember her name so I ask her to tell me again. She looks tired and sad. I wonder about her. "Forgive me if you've told me already but would you please tell me about your daughter again?" I ask. She tells me that her daughter was diagnosed with ALL when she was three and was in remission for I think she said, 10 years, and has relapsed. This is such a blow that I don't know what to do. I feel a little faint and immediately my body goes into overdrive fortifying itself. Her story is wretched and suddenly I hate cancer with every single bit of my mind, body, and spirit. I listen to her tell me what happened and I am acutely aware that I am seething. I feel like my teeth are gnashing and grinding. I'm so pissed off that her daughter's cancer came back after all those years that I hardly know how to contain myself.

I don't remember how we got onto the topic but we started talking about school. The mother of the 8 year old boy tells me that he's never been to school. He's always been too ill. That, and he has learning problems, short-term memory issues among other things. I suddenly feel like a piece of shit for ever having felt sorry for myself and Aria believing that her school experience has been so compromised. She's been able to go school a lot in comparison to many of these kids. Compared to her peers, it has been limited exposure but relative to the world of cancer, Aria's experience has been exceptional. I feel bad that I've been so clueless all this time. I know I shouldn't, but I do. I don't have the energy to transcend that right now but I will. For now, I'll just let it be what is and sit easy with that.

The mother of the 13 year old daughter tells me that because her daughter needed radiation treatment during her first diagnosis, she has unusual and hard to identify learning disabilities. She excels in some areas and not in others. One day she seems perfectly fine and other days less so. In fact, in the course of a day, she can one minute retain information and in the next not seem to understand even the simplest of tasks. This mothers continues her story saying that it has been 10 years of battling the education system and trying to educate them regarding the neurological effects of radiation, most of which aren't thoroughly well understood. She tries to suppress tears telling us how often she was accused of being a poor parent and not committed enough to her daughter's education. "I was told" she said, "that it was my fault that she was failing her spelling tests. That I just didn't spend enough time with her. That if I was more this or that that she wouldn't be having these problems." For 10 years this mother continued the raging battle on behalf of her daughter fighting to connect the disconnect that came to define them. To the teachers and educators throughout this little girl's elementary career, she looked and seemed just fine. "All is well," they must have thought. Yeah, she had cancer a while ago when she was little but she's cured and now everything is fine. They couldn't see outside of their box, walled with layers of fear and trimmed with a lack of compassion. That may sound harsh but sometimes the truth is. For years this woman confronted people who should have been part of her support system taking note of her battle wounds and scars but instead they became a foe adding splinters of misery to her experience. She stood before me with all those years of hurt and continued pain and now has to endure the ravages of cancer once again. To say that I am humbled by her is completely pathetic. The truth is, I am nothing compared to her and I don't mean that to sound as horrible as it probably does. The simple truth is that when you are standing among giants it is ok to recognize how small you really are.

I continued to listen to her story fully aware that I was without words; perhaps for the first time. A miracle! Sherry, the family advocate came to us marveling at the picture we made; mothers standing united trying to make sense of it all. Sherry touched me on my arm and then in flash turned around and walked with a quickened step back to the area just outside the isolation room. It was like she was trying to run and catch something that had escaped but didn't want to appear alarming. It was a man she was trying to reach and I assume he was the father of the young person who had been in crisis a few hours ago. They had obviously called him from work and he raced like the wind to get there. He was still blowing in when he arrived, wide-eyed, bewildered and frightened. He went into the room briefly only to discover that no one was in there and as he stepped out turning in circles for help, Sherry caught him. He was pale, almost gray and the contrast of his pallor and his blue shirt was stark. His shirt screamed, "BLUE!" Truly, it was the bluest garment I had ever seen and once again I found myself staring at life suspended in a state of disbelief. Sherry was quietly but firmly telling him what he needed to know. She created a sheltered space, a chamber that surrounded only them making them unseen and unheard. It was an incredible thing to witness.

Aria's chemotherapy had arrived and she was called into an evaluation room. I stayed in the hallway with the 2 other mothers. I don't remember saying good-bye. I don't really remember how the conversation ended. The mother of the young girl departed on a heavy sigh that left a dark wake. Aria was finished and suddenly we were in high speed to leave! I hugged the other mother awaiting the fate of her vacation wishing them well and left the clinic.

This tells the tale of 3 hours of one day spent in the oncology clinic, a place we have been many, many times. There were 28 families scheduled to be seen this day. In 3 hours, I was able to observe half of them and tell you about them. It isn't just about Aria. I wish it was. It isn't. It is about so much more and this realization reflects a turn I have taken on this journey that has opened my eyes to a much broader view. Sometimes it is so hard to look because the glare is so painful but I'm finding ways to take it all in and open up to it. I write about it because I'm witness to something special and I am compelled to document it not only for myself and for Aria but in celebration of all of those who a part of the view that I now see. We will one day step to the other side and join the world of normal once again but we will always carry the world of cancer with us. I imagine this world will become smaller with time but it will always be present and we will forever be marked by its power.

The power to which I refer is reflected in the garden of gifts many describe about their cancer experiences. It is the new perspective people talk about. It flowers with petals that gently blow on the breeze of "Sure makes you think" and grows among the singing grasses that in chorus chant, "Makes you realize what's really important." I am finally able to see this garden now somewhere in the distance. I catch hints of its sweet scent and I can imagine the rainbow of color it possesses. I'm not there yet but that's where I'm headed and I'm so honored to take you with me. I know it has been a gross imposition to take advantage of your time as I have but I believe that I fully honor Aria by also recognizing and honoring the many along the way. Sometimes they seem like large swaying trees bowing to us as we go. Other times, they create a glorious meadow sparkling with hope and light that I want to run through and roll around in. I see, now, with crystal clarity that although this is my journey alongside Aria and we are enjoying an easier and almost pleasant path, it is a much bigger story. We are one of a multiplicity of threads weaving in and out of this garden that is abundant with life, death, growth, decay, sharp pointed perspective and withered tired space. These threads may appear at times weak and unreliable but they possess the strength and endurance that keeps this garden held together with infinite grace. I am heading toward this place and I imagine that when I enter this new garden of Eden I will cross under a large sign that reads, "What matters most is You." ~j

Aria's Summer 2009 so far

August 16, 2009
Subject: Aria’s summer so far…

Following on the heels on "my silence" is a strange thing. I don't know how to avoid repeating myself at this point. But allow me, if you will, to highlight some of our summer--the good and the bad.

The last time I wrote about Aria's clinical status was WAY back in June, just before her graduation. We'd been dealing with fluctuating ANCs that made me sometimes wonder if I was coming or going. My mind would dance around scattered thoughts like, "Is it ok to take her in public or not? Can she eat in a restaurant or would it be safer/better not to? Do I let her play with other kids or keep her away and at home?" Back and forth and back forth we volleyed for weeks.

We're still bouncing but it is methodical in a way. There's a rhythm to our lives that is gentle, sort of predictable and dare I say, calm. Aria continues to do well despite going up and down on this crazy ride. She is masterful at finding balance, weathering the storm, resuming presence and sharing the exuberance of her spirit. Aria is an exquisite light. How I wish I could capture that for you!

Since I wrote to you last, Aria has been to the clinic 4 times and had a spinal tap last month. Her 5th clinic visit was just this past Tuesday (August 11, 2009) and I'll be writing that in a separate email. I wasn't able to go to her spinal tap appointment for the first time since this process began. I was sick and had to stay home in bed. I think the stress of our trip to Georgia and the stress of 18 months of cancer-world-immersion finally caught up with me. I can't tell you how hard it was not being able to go and how strange. Aria sailed through like a champ, however. She seems to be facing treatment about as beautifully as anyone could hope for even though we have to tweak her medication here and there and check and re-check the resutls.

Toward the end of July, Aria got her cast off 12 weeks to the day of when it was put on and to see her run all over the place exclaiming, "I'm FREEEEEE!" was just extraordinary. I can't help but fast-forward to what she'll be like in April when her port is removed and her treatment is over. I'm sure I'll bring some extra mops to the clinic that day to help clean up the puddle mess that will be me!

So you see, all is going well and as planned. A friend who has been through this experience wrote to me and asked if I was at a place in Aria's treatment where it felt a little less disruptive and perhaps a little more normal. Another friend wrote to me and shared that we all have problems, life is hard for everyone at different times and there comes a point where acceptance is necessary so that life can resume a sense of 'normal.' From where I'm perched in this small, complicated world of cancer, accepting 2 1/2 years of treatment and years of follow-up is something I have had to do. The dips and dives that we've experienced along way are hard to accept but I do to a certain degree. Nevertheless, I would be kidding myself if I tried to suggest that there is ANYTHING about this journey that is 'normal.' I've mentioned that it is a new normal but even that is convoluted. We are surrounded by extraordinary circumstances. The instinct to live, to fight and to endure is monumental. I can so no reason why people endure what they do. It is absolutely mind-blowing and this is something we face at least once a month in a very tangible way but it also something heavily woven into the fabric of my life and I'm still trying to figure out how to make it fit.

I’ve alluded to the idea that if this journey was only about Aria it would easy and indeed it would feel less disruptive to the natural flow of life. There would be a tangible sense of normal. I would be easily able to accept things as they are because Aria is amazing. She is healing. She is gaining strength and stamina. She is sailing smoothly through this process and I'm often on my knees in gratitude. But it isn't just about Aria. We go to clinic and there we see person after person after person with a story to tell, with an experience to share and accept, with a life that has gone through a compass shift never to resume its original path. There is no going back to once was. There is only going forward to what is. Trust me, this is a simple intellectual exercise but the process of actually adopting that into one's practice takes time and a great deal of thought. Dozens and dozens of kids and their families are intricately part of our lives. Our story now includes all of them to some degree making the atmosphere in which we move unbelievably heavy.

You may wonder how or why I bother to take on these other stories. Why not put blinders on and just focus on Aria? I think some people can and there's nothing wrong with it. People have the capacity for only so much and what these kids and families have to go through on a daily basis extends beyond imagination. Whatever people do to cope is entirely up to them and it is essential to maintain a high degree of compassion in order to make it through the many obstacles set along the way. There are some mal-adaptive coping strategies to be sure but most people are sincerely doing the best they can with what they know and understand. I can't tell you what compels me to meet these families and learn their stories. It is simply how I am hard-wired. It might be easier for me to try to ignore them but I can't. I see them and I hear them. I can't pretend I don't. Furthermore, I think about all the children who have died from this disease in its many, many forms and I am without words to express my gratitude for their contribution to the research that is helping to save Aria's life. By participating in the process fully with Aria and allowing some room for others, I am able to celebrate those who have died as well as those who will. It might be easier to not pay attention and shut this part of myself off, but I'm convinced I'd be the poorer for having done so.

So as my thoughts turn back to Aria, there is really nothing earth-shattering to report, which is heaven. However, on this physical and temporal plane, which I cannot seem capable of transcending, there is the ever present notion of duality. In other words where there is heaven there is hell.

What is the hell you may be wondering? What can be hellish about Aria doing so well? Trust me, I go round and round like a kid with my head on the end of a bat turning in circles until I fall down in a dizzy stupor. I've talked about it before. It is the disconnect of how well she looks and is but at the same time, isn't. This has troubled me for some time now. Everything seems fine and normal sort of like it used to be but it isn't. The reality is that things can and do change in an instant so it is almost impossible to rest easy in a plan that involves anything other than hanging around close to home. Any little complaint shoots up flags of concern and wonder. 'Will this amount to something or is this just her not knowing what she wants? Is she really sick to her stomach and going to throw-up or is she just hungry and tired and fussy? Does her complaint of fatigue mean that a fever is brewing and going to pop out in the next little while or is her weekly methotrexate chemo kicking in? What's that gonna do this time?' Questions like this and more are always there. It's part of what comes along for the ride and round and round we go.

What makes it difficult is that it detracts from the moment, which is that Aria is doing so well. They're valid concerns that reflect a hyper-vigilance that has come to define our lives but they don't define what is happening in the moment. If I may, life with Aria it is like a bubbling cauldron and little things happen that stir the pot bringing all kinds of colorful chunky stuff to the surface. Slowly, after things have simmered down, life is still, until the next little bubbly eruption. This is how it goes.

In spite of that, we have so much of our lives back and I'm amazed and grateful. We are embarking on a new phase that is just terrific but there is also a new sense of balance to be discovered too. We are well but not entirely well. She is so much better but not entirely better. This summer is completely different from last summer but there are still remnants that appear out of nowhere and successfully churn the memories and triggers of what made this journey a year ago so difficult. We're getting farther and farther away from that difficulty but I would be in denial if I didn't admit that there are remains in my pocket that I finger every single day. Still, I have to remember that hope is now tangible and measurable for us.

Summer is such a good time in terms of healing. There are no pressures, no real schedules just a whole lot of down-time. I can't tell you how important that is. I sometimes long for weekend getaways or even a day trip here and there but the truth is those things are just a little too much right now. The preparation it requires knowing in the back of my mind that things can change at a moment's notice and our best laid plans can be obliterated is not a strong motivating force getting me out of the comfort of my home especially if I'm doing it by myself. I know, it's sad, but it is what it is right now. I think about places we could go to for the day or the afternoon and I get a touch of panic thinking how far those places are from the nearest hospital. It is safe being home and we are still going through the throws of treatment so it just isn't our time. Yet. I have to tell you, there are days when I want it to be. Oh, how I long for it. It will come. It will and I can see it coming closer and closer. The lesson is to come back to myself, to sit and be still. To once again, just be.

I told myself just the other day, "Julia, may I suggest that you quit mourning over how far you've yet to go and take stock in how far you've already come!" This helped a great deal and I guarantee you, I needed to hear it from me. This, coming from anyone else, would have been unintentionally hurtful. I'm, surprisingly, in a place where my skin is thin despite my strength. It seems as if comments that try to steer me away from how hard the journey has been, or how much we still have to do leave me carrying a small bundle of hurt in my hand. I know that this truth; people wanting to point out that Aria is doing so well, for example, is not meant to be hurtful but for a number of reasons it is. Perhaps it is just my vantage point right now, but sometimes it appears to me like a quick and easy swipe of everything surrounding her that gets tucked away under the rug of 'all is well.'

I know I need to consider this much deeper because I can't imagine what it must be like for you wondering, "Gee Whiz! What the hell does she want us to say? Crickey, Wish things weren't so well?" My good friend Jen told me, "We're just following your lead." God, I love that. But here's the deal folks, it comes down to what I've mentioned a number of times before and that is that Aria's wellness is not enough to carry me over the magnitude of this process. Plain and simple it just isn't. That is the hell. Trust me, I want it to be. I'm desperate for it to be a lot of the time, but it isn't. That's the harsh reality. So, every time someone tells me after I've spilled part of my guts, "Gee, I'm so glad Aria is doing so well or But Aria's great right? or But you don't have to worry so much anymore, right?" I feel dismissed. I feel a perverted sense of envy that when others look at Aria and she looks so great as if nothing is wrong, they have the luxury of being able to forget that she isn't over the hump. They can look at her and think, "She's done! Everything is o.kay and back to normal!" It isn't and it hurts.

This is a new aspect associated with this leg of the journey and I think it fuels that attitude of "They just don't get it." I do not want to carry that in my backpack. My load is heavy enough and the better I understand the terrain in which I now find myself the easier my step. So how does this happen? How is it that I can't seem to look at Aria and celebrate her wellness the same way others can? Why isn't it enough? I think there are obvious reasons, not the least of which is that I'm her mother and completely entrenched in the process. But I think I ought to go deeper.

I think there's a twofold reason. The first is that I encounter people on a daily basis who are not able to handle the enormity of our cancer world. It is too immense. It is too intimidating. It is beyond their experience and their scope. Not to mention that the disconnect between how Aria looks versus how she really is is just too great. So they are left embracing the only obvious superficial thing, which is that Aria is doing well. Sometimes the truth is hard and people are simply following my lead. I get it and I'm grateful for this truth so don't feel bad if you've ever said this to me or continue to say it to me. I'm just telling you that there's a dark side to this particular truth. One of my Goddesses just emailed me saying that she holds onto the words "Aria is doing so well" so that she doesn't worry herself sick thinking of the alternative. That was a wonderful perspective and one that I hadn't considered. I forget that most of you are way on the outside of this experience so those words must feel like a life-line keeping you from getting swept up in the waves of concern. Does it make sense to you, however, that because I'm in the thick of it, that I need a different kind of life-line?

The other aspect of this reality is, obviously, me. It is here that I could go off on some tangent about needing to be a stronger woman, a more grateful woman, someone more positive and optimistic. There's probably an element of truth there but that isn't what has my attention. What's got a hold on me is my need and desire to make this experience full and rich with clarity. If I can understand it with depth, then so can you. You don't need to walk in my shoes to understand my experience. If you can understand it with some insight and depth given from me, then I will feel empowered to continue on. You feel closer to me when I sense that I'm painting a vivid and full picture and the truth is, I still need you close. I may be in the middle hanging on but I still need to know that some of you, at least, are out there cheering for us! So you see, my words "Aria is doing so well" may be what helps you stay a float but it is You and your presence that helps me.

So in the spirit of painting a vivid portrait of Aria, let me share with you this. We have been able to do many things this summer. What has been sort of odd is that doing these things requires some element of adjustment. It isn't a matter of just picking up where we left off. It is a matter of doing these 'normal' family activities but still having to carry in our pockets, cancer. I don't have any idea why I thought it would be different or easier somehow. I suppose I thought that being able to do these things once again would make me feel more normal, like our life was being pieced together with sturdiness and fortitude. It isn't and it reflects very simply the long process of loss. It is something we cope with, something to which we are adapting, and something we are learning about on a daily basis. All of it is new.

For instance, when we went to Georgia earlier in July to celebrate my parents' 50th wedding anniversary it was an incredible mix of emotion. We were not going to get our hopes up about this trip actually happening until we were buckled in and 35,000 feet above the planet. I've never had to live with that kind of angst before. You know, wanting to go so badly, thinking about it for months, trying not to dream and wonder what it was going to be like just in case, knowing that at a moment's notice something could happen and we wouldn't be there. And THAT had to be ok because it is what it is.

You well know that we made the flight. Aria was great despite an increase in her chemotherapy, which she seemed to tolerate well. I won't kid you, the day was long and it all but wiped Aria out. We have a picture of her in the Salt Lake City airport crumpled sound asleep in a stroller. Still, they had a ball and we were thrilled to be able to go. Mind you, I had with me emergency contact numbers and I knew exactly where the children's hospital and oncology ward was, in case anything was to happen. That, too, is a very strange thing to have to carry around. I wanted to feel like everything was ordinary. We were just taking a family trip but in the back of my mind I knew our life was still anything but ordinary. When we landed in Georgia and settled into our rental van, Aria immediately started to complain that she felt sick. Doc and I just looked at each other. "uh-oh!" She threw up all over herself and the car seat but felt so much better having done so. "Was this just fatigue from the flight? Did we not plan snacks well and she got over-hungry? Is something brewing? What does this mean?" We just had to roll with it and we did. Fortunately, it amounted to nothing. Aria was terrific but Doc and I were deeply affected. This isn't something that is easily dismissed and I wish it were.

We tried to put it all behind us for those few glorious days and in many, many respects we were successful. It was an incredible trip and we are so grateful that we were able to go especially considering that last summer, this would never have even been an option. It was wonderful and hands down the highlight of our summer. Truly.

God I wish the success of this trip was enough to carry me over the top, but it isn't. It gets me closer and for that I bow deeply. You may wonder, "what will get you over this mound?" I think the answer is, the journey itself. I'll get there when I get there. Some days I'll chip away at it, other days I'll probably add to it by my own doing, and other days I'll stay still not making any progress at all. This is all part of it and I continue to go through the depths the process requires. It isn't getting over the top that is necessarily the goal, it is staying present every step of the way.

Aria is gaining strength each day. She is swimming every single day and I've begun checking her skin to see if she's acquiring scales! She is following Reo swimming in the deep end and doing cannonballs off the diving board shouting, "Geronimo!!" She is a glorious playmate to both Reo and Rianna and seems able to one minute be in the throws of galactic warfare battling with light-sabers and blasters and the next be tranquil in the pastoral setting of her ponies and unicorns. I've never seen anything like it. She is a one-of-a-kind person. We have a new litter of kittens and she is several times a day with them, holding and cuddling them. She has a strong animal connection and such a gentle spirit.

My Goddesses came to visit for a wonderful 9 day stay. The glitter was everywhere, so much so, that my vacuum is covered in it. This makes me very happy! It was a wonderful break to have them here sewing, singing, swimming, cooking, eating and playing. Jeannie Goddess and Aria have this 'thing'. Aria loves to sit beside Jeannie and fake fart. Jeannie Goddess throws herself into a fit of giggles, which does nothing but encourage Aria even more. Rianna has gotten into the act now and likes to say, "I poop in youRS eye!" These moments are glorious. These fits of laughter that we have. Oh, how they help! They really do balance those things that are hard and I have to tell you, having my Goddesses here to bear witness to what makes this so hard sometimes was incredibly therapeutic.

One morning, Aria woke up complaining that her ear hurt. This was new. As she sat up and wiped away the sleep from her eyes, she began screaming, "It Hurts! It Hurts! Owwwwweeee!" In an instant I was back in the hospital with her during those first cold January days in 2008 while she sat on the potty wide-eyed and screaming, "Somebody Help ME!" All those memories came flooding back and suddenly my heart was racing and I was completely focused on remaining calm. I got all the kids dressed and ready to go to the ER. My Goddesses were still in bed but I went to them and told them what was happening. As if I had hit them with a cattle prod, they were up and out of bed ready to do battle. It was astonishing. The energy of urgency was all around. There was no escaping it despite my efforts to be calm, cool and collected. They were desperate to help. "Do want us to go? Do you want us to stay? Do you want Reo and Rianna to go or to stay? What should we do?" Reo and Rianna wanted to come to the ER. They always do. It doesn't feel right being separated from Aria. It never has so they were coming with. I know how small the exam rooms are in the ER so I couldn't imagine having 3 extra adults hanging around, waiting and wanting to be helpful. I told them to stay. I told them that I was focused and just needed to get Aria seen to determine what was going on. As I pulled away, my Goddesses were standing at the window waving at me shaking their heads as if to ask, "What just happened?"

I called a little while later letting them know that Aria had been diagnosed with an ear infection; swimmer's ear. She received antibiotic ear drops, was told to keep her head above water for the next 7 - 10 days and to take it easy in general. I wrote in an earlier email that I was warned that this particular bacteria is a bad one and to watch her carefully and if things take a turn for the worse to come back right away. It didn't feel like just simple swimmer's ear and the poor kid. She was beginning to take off swimming under water, having the time of her life being cast free and within a little more than a week she was grounded again. I don't know, it just felt like she couldn't catch a break. Aria was pretty bummed out about not being able to swim but I let her so long as she kept her ears 'sort of' dry. Come on, it was 90+ degrees for days and days, and everyone was swimming. I couldn't let Aria sit out of the pool! She was thrilled to be able to be in the water and so we had a ball. The following day, Friday, Aria was great. She was energetic, cheerful and full of vigor. Her ear stopped hurting and she tolerated the ear drops without any problems whatsoever. We had a glorious day. Friday evening, as you may recall, we went swimming for a short time before dinner around 6 o'clock. Aria was having so much fun tossing a ball and playing on a big air mattress that she floated on all over the place. She giggled and giggled the entire time we were in the pool. We got out, dried off and went into the house to make ready for dinner. Suddenly, Jeannie Goddess noticed that Aria said "I just feel tired" in a peetered-out sort of way and put herself on the couch wrapped in a blanket. This seemed very odd so Jeannie Goddess went to her and felt her forehead. She calmly came to me and said, "Aria feels warm to me." We took her temperature and sure enough made ready for the ER once again!

This time with a fever on board, I was convinced that Doc and Aria would be staying over night. We've never gone to the ER with Aria febrile and been able to come home. I've heard of it happening, but we had yet to experience it. So I tried to calmly get the over-night bag packed, including her favorite jammies and toothbrush, while Aria was gently telling Reo that she was going to be ok. He was trying not to cry because he wasn't allowed to accompany her this time. It was 7pm on a Friday night in the ER. Doc and I both knew it would be a minimum 3 hour gig and probably a sleep-over. Reo, Rianna and I had to stay home. He was crushed and Aria was very reassuring. The magic between those two is truly something. Suddenly, Reo realized that this wasn't about him and he then began reassuring Aria. He hugged her countless times, telling her that he would see her in the morning. Rianna was teary not quite able to process the energy of the room. She knew something intense was happening but didn't fully understand it. Reo and Aria reassured her. It was just the sweetest, most pitiful thing.

My goddesses, meanwhile, stood back and watched in complete and silent amazement. Jeannie Goddess said to me repeatedly as if in a suspended state of disbelief, "5 minutes ago we were swimming in the pool and nothing was wrong and now Aria is going to the ER! What is this?" Ellie Goddess and Rebekka Goddess were in chorus almost chanting, "We're just standing here because there's absolutely nothing we can do." It is a totally surreal experience and no, no matter how often we've had go through this drill, which isn't a lot, it never feels normal!

As you know, Aria was able to come home and let me tell you, the hope that this brought is immense. If it is any indication of what the future has in store for Aria, things are really, really good and I can rest in the hands of that hope. The following day, Saturday, was peculiar. It was hard to know what to do. She didn't have a fever and acted as if nothing was wrong. In truth, nothing was wrong. She was perfectly fine and ready to face the day. I, on the other hand, was still reeling from the fact that less than 24 hours earlier she had spent 4 hours in the ER! This is a perfect example of how kids live moment to moment much better than we, adults, do.

Aria was fine. She felt good. She was ready to play and go swimming. That was her in this moment. I was mired in what had happened 24 hours before and couldn't let it go. I looked at her feeling perfectly well and kept wondering and waiting for the bottom drop out. Dr. Trobaugh warned us that it might and stopped her chemo in preparation so my concern wasn't completely fabricated but it also wasn't reflective of the moment, of the "Now." This is a hard habit to break but I am determined to live presently. So, I decided to go forward with how Aria was doing and feeling in this moment. We had a great day. She played outside with the hose for hours. She swam in the pool and tossed the ball to Jeannie Goddess. They played fart jokes from sun up to sun down. At one point during the day, we were swimming and Aria suddenly decided she had had enough and wanted to dry off and lie down. Jeannie Goddess went to her to help her with a towel and looked at me with great worry and said, "It is all I can do not to feel her forehead!" In that moment, I have never felt so validated in my life! That's it! That's the "Aria is doing so well but..." thing I've been talking about. It is such a wiggly-slippery-slithering-tricky bit of business. I told her, "Look, if it would make you feel better, please go ahead." She immediately put her hand on Aria's forehead and giggled after Aria said, "I'm used to that! My mom does it all the time!"

This my friends, is the disconnect. Aria looks great and for all intents and purposes, she is doing well, BUT there are still these enormous hurdles that suddenly appear out of nowhere and they are colored with memory, laden with triggers, and intimidating to face. There's no getting around it either. We take a deep breath and plow on through just like we've been doing all along. I want to be able to look at Aria as you do and see only that she is doing so well. I want to be able to hear my words celebrating Aria's continuing improvement and smile with ease and reassurance that she is doing so well. Alas, as her mother, I have a different view of her. One that is unique to only me.

What I shall be considering, however, in the days, weeks and months to come is how to open up and let your view and your light enter and mingle more with my own. I want to see this through your lens from time to time. It helps. It hurts sometimes, but even that in the end is helpful. This is all part of the journey for which there is no destination. There is only each step, each moment, each insight, each stumble, each giggle, each tear and so forth. I celebrate it all and I share it with you because it is, very simply, what I believe it means to be human. ~j

Sunday, January 31, 2010

My Silence

August 13, 2009

Subject: my silence

My dad wrote an email several days ago letting people know that Aria had been taken to the ER. He mentioned how busy we'd been in recent weeks with our Georgia trip as well as beginning a large remodeling project to 'Old Henry', our beloved farmhouse. I couldn't help but wonder if he mentioned these things as a way of offering explanation about my silence for the past 2 months.

I'll tell you very sincerely that the abrupt cessation of my emails was deliberate. I'll also add that it wasn't intended to keep you uninformed, wondering. That has been an unfortunate consequence and one that I didn't fully consider when I decided to stop writing. I knew I would resume when I was ready but I didn't take into account that even snippets of information about Aria might be helpful. Perhaps some of you wondered but were afraid to ask. This, too, is a strange and unfortunate consequence of my writing, which represents one of the reasons why I needed some time to pause and reflect about what I was doing.

The truth is, I was starting feel like Eeyore from Winnie the Pooh, always moaning, always negative, always ho-hum about every little thing. I was feeling stuck and I couldn't figure out how to get unstuck. I found myself writing about how hard it all is even now and yet never felt like I was able to fully capture it for you. There's this desire, almost need to explain it to you in detail and I couldn't figure out what was motivating that. I'm not sure I fully understand it yet but as I was making the bed this morning something dawned on me that I hadn't considered before. It often feels like I'm in this parallel world to yours and sometimes it's as if you are floating farther and farther away orbiting the great universe of normal and here I remain in this small and complicated world called Cancer. Sometimes it's as if I'm standing on the edge waving at you, shouting, "I'm Here! I'm Here! I'm STILL Here!" This is often followed by detailing life on this strange little sphere as a feeble attempt to keep you close, to keep you from misunderstanding what motivates and defines me now and to keep you from inadvertently judging me and what you don't understand. This I've come to realize in my silence is unfair. So often I'll tell my tale of woe and people will validate and comfort me. They are always so generous and I stand before them feeling incredulous. "How can they say to me, "Of course you feel that way Julia?" when I can't believe it myself. I realize now that it isn't you floating farther away leaving a wake of misunderstanding. It is I. To get me to this place took some time and some thought. Let me share it with you, if I may.

In my fictitious Eeyore state, I was feeling insecure that you were reading my emails thinking me completely pessimistic and unable to see the bright side; Aria is doing so well. I recognize that I was projecting these thoughts but I was stuck doing so and couldn't figure out how to stop. I couldn't seem to shake the heaviness of it all and for some reason I had convinced myself that it needed to be lighter. Certainly we have reached a point in treatment where we can be lighter. Can't we? I have since come to realize and accept that, no, we are still in treatment and life for us is heavy. Even though Aria is great, life is still hard and it runs the spectrum of emotion.

Layered on top of this growing insecurity making me feel like I needed to shut down and turn away from others for reasons of self-preservation, were 2 distinct incidents that occurred roughly around the time I contemplated taking a break to gain some much needed perspective. The first was that I read a biography about Joseph Campbell, which was excellent. In it were many excerpts from his private journals of his youth. One of the things he wrote that shot out at me like an arrow was that he viewed his journal writing as the ultimate form of exhibitionism. He meant this at that time in his life as something not so nice. Suddenly, I found myself taking that very personally coupling it with my already over-emphasized bout of insecurity and doubt. I found myself thinking, "Julia, like you have ANYTHING to say! Just Shut Up! Quit your moaning! No one wants to hear it anyway!"

Shortly after that a good friend came to visit. I shared with her some of my doubts and she said something to me that was the final straw. She may be reading this now and it is imperative that I say, her comment, although it shut me down temporarily, was a wonderful bit of truth that helped me open a door barred with nailed slats of my own fear. She said to me, "Yeah, your emails are like one-way therapy." At the time, I groaned in that truth imagining my emails being opened like some horrible monster spewing green gooey contents of God-only-knows-what! I kept thinking, "Oh my god, you poor things! Here I am exposing myself from all angles and all you want to do is close your eyes and gently hand me a robe! Furthermore," I continued, "no one wants to hear you rambling on and on about how this is making YOU feel. This is about ARIA, not you, so just stick to the facts and keep all that other stuff to yourself!" Right then and there I turned off my mind to writing.

It has been a wonderful pause. I don't know that my mind has been silent per se but it has respected my need to go deeper. It is interesting to observe that during this time, I also haven't been able to remember any of my dreams. Normally, I have a vivid dream state but I told a friend that it feels as if I've closed the portal to that particular aspect of myself for the time being.

Let me tell you that it seems clear to me that virtually everyone I have met on a similar journey knows this insecurity and doubt well. It's not that it is rational nor is it even well founded so don't try to understand it from those perspectives. Rather it comes from living mired in moments that anyone in their right mind under other circumstances would try to run away from. The thing is, we can't. We have to be present and sit in the middle of this shit pile called cancer day in and day out. Yeah, there are rays of sunshine that come around. There are butterflies that visit and songs of birds swirling around the stench of worry that is now our life but those feel so small a lot of the time. Those feel like moments of joy, pleasure and optimism that we reach for and hold onto for dear life, but they don't last. They'll come back. That is the hope. They do. That is the miracle. Still, here we sit in this wretched foulness.

Do I continue to tell you about it? Because the truth is that if this experience was only about Aria, it would easy. The pile would be hardly noticeable by now and the scent would have strong wafts of perfume floating by. But it isn't just about Aria. That's the problem. That's what makes it so big. Do I go on? Do you really want to hear about it? I know I'm so sick of dealing with it and facing it that surely you must be too! This is the start of the insecurity. I continue on because I don't know what else to do. I explain. I illustrate. I try to draw you into our world for my own sense of comfort. But there's nothing you can do and there's nothing you can say. I just have to sit and be and man that stinks! You know it and so do I, so what happens is people say less and less. Again, what is there to say? The sad consequence to the silence is more insecurity epitomized by the assumption that people are tired of hearing about it. Maybe some are, but most aren't. People want to know even though they don't know what to say or say all the wrong things thinking they have to say something.

The insecurity increases and what happens next is a sort of natural retreat. So many of us have to be withdrawn from normal activities anyway that it becomes easy to remain that way even when it isn't entirely necessary. This reality welcomes another form of insecurity called self-consciousness. The bottom line is that being home is familiar and it's safe. But what happens after this separation from others is a sort of closure that isn't helpful at all and yet also seems like such a natural progression. In one's insecurity, doubt and refrain, there's a feeling that others just don't understand anymore. "They just don't get it!" I hear countless times. What they're trying to say is that the crisis is over but the rubble remains and who wants to hear about that day in and day out? We've convinced ourselves that the rubble is rubbish, not worthy of attention, fatiguing and annoying to others. What's worse is we often see the rubble of others and theirs is a mightier mess, so what do we have to complain about? It could, after all, be so much worse. This attitude suggests that it is better to fortify and shut others out to minimize the reminders of just how removed from everyday 'normal' life we really are. This is an easy place to get to and it is an easy place to stay. It seemed like a sort of slow death to me and I didn't want to be caught in its grasp.

I took some time to be quiet. I fortified myself not to keep others out but to figure out how to open up wider than ever before. It seems to me that somewhere down the pike, we have oversimplified the idea that negative is bad and positive is good. This, my friends, we all know to be folly. We know it doesn't work this way. But it is a pervasive attitude; one with a horribly hard shell. It takes a great deal of strength to crack this notion and get to the balance resting inside. This is what I've done for the past 2 months. It has been so difficult to get over the hump of thinking that I'm droning on and on unable to be inspiring, as if I need to be that let alone thinking that inspiration means being only positive.

We're sort of led to believe that, you know. We've been taught to suffer in silence, put on that happy face, keep a stiff upper lip, never let your guard down, never let your kids see you cry, show them how to be brave, how to grin and bear it. Shall I go on? I'm sure you can find several other examples and doesn't it strike you as odd that when people do this and we know they have every reason to be sorrowful that suddenly we find ourselves suspicious wondering if they are in denial of some kind. It is my belief that what we're craving is to see that people are real and genuine.

I understand that many people are private about their feelings and there's nothing wrong with that. The problem that arises, as I see it, is people confusing being private with being closed off. In other words being so private with one's thoughts and emotions that they can't or won't let anyone else in. This is the voice of fear. People fear being vulnerable and appearing weak so they shut themselves off and shut others out proclaiming, "they just don't get it." This is what gets people stuck.

The reality is, that you don't know and understand my experience as I do but it doesn't mean that you can't. I see it as my responsibility and my privilege to share it with you in as much gruesome and beautiful detail as possible. I don't want to shut you out because I've convinced myself that you don't understand. I want you to understand. I want you to see. I want you to share this with me. It helps ease the load. It strengthens me. It keeps me from being lonely. It makes me feel alive. If it has some kind of other effect like it helps give rise to your own voice and your own story, well then, I'm delighted but the main reason for my exhibitionistic one-way therapy is purely selfish!

So here I am completely exposed once again but I am fortified. I am stronger than ever. I am in the radiance of Aria so it is no wonder that I feel as if I possess super powers of a sort. I have to write about this experience. The compulsion to do so is beyond me so I want to welcome you once again to our experience as we head toward the finish line. I want you to know that your presence has meant the world to me. I want you to know that whether you understand my experience or me is irrelevant compared to the importance of you just being with me. If I can shed some light on what it means to be in the midst of cancer, may it be in the glow of Aria. ~j

Aria Came Home!!!



Those Lazy Days of Summer!!!

August 1, 2009
Subject: Aria came home!

For the first time ever, Aria went to the ER with a fever and didn't have to be admitted! They accessed her port and drew some labs, which revealed a spike in her white blood cell count, which is nothing more than a healthy indication that her body is fighting an infection. This also meant a decent ANC so no need for an admit, YET. That's the key word folks. In the ER they gave her a broad spectrum IV antibiotic and talked to Dr. Trobaugh, who was on call last night. It is Dr. Trobaugh's belief that in a matter of days, her counts may tank. So, she stopped her chemo for the time being in preparation. She firmly believes that this is a result of the swimmer's ear bacterial infection that Aria is currently trying to fight off. If she continues with the chemo, Aria will definitely become more immuno-suppressed with tanking counts. By stopping the chemo for a few days we may be able to avoid that altogether, but it is a wait and see game. When Aria came home (nearly 4 hours later), her fever was gone and she slept through the night staying nice and cool. Naturally we were checking her constantly. If she should spike a fever again, then we'll take her back to the ER and she'll more than likely be admitted.

I think we're in a new phase. I've heard of people going to the ER for fevers and not having to be admitted and I've always wondered what that would be like. Now I’ve had a taste of it and I have to admit it is nice! That may strike you as being a little odd. Of course, it is wonderful having Aria at home versus in the hospital, but let me tell you, there's a great sense of comfort at the hospital. Those nurses and doctors know how to take care of my Aria and they do it in a way that is so gentle, efficient and caring. It is also very nice.

Being at home, we're on a bed of pins and needles. "Is she going to spike a fever? When? Does she look warm? Aria, are you feeling ok? We better not go anywhere or do anything just in case." It is a halting kind of existence. When we're in the hospital, at least we know we aren't going anywhere. At least we know what we're dealing with. At home, there is tremendous comfort but there is also a sea of unknown surrounding us. Do I let her go outside and play? Do I let her go swimming? Should I take her out in public? Should I just sit with her on the couch all day and watch her waiting for something to happen? Do I treat her as if nothing has happened since she doesn't have a fever right now and everything seems ok, knowing full well that there may be something brewing again? This is an emotional tug of war that I don't enjoy at all.

This morning Aria was whimpering at the top of the stairs complaining that her tummy hurt and that she felt 'throw-uppy'. You can imagine the tale-spin this created. So naturally, I put her on our bed and she felt warm. I prepared to take her temperature, which is normal and I gave her the morning medicines. It is a matter of monitoring her. It is a matter of not being able to let my guard down. It is a matter of spending a very hot day in a weird sort of red alert.

It is worth mentioning here that this fever came as a complete shock yesterday. I told you already that she had a great day and there was never an indication that something was brewing and that a fever was about to happen followed by another ER visit. I'm so thankful my Goddesses were and still are here to bear witness to the fact that things really can and do change in a matter of minutes and this, my friends, is what is so absolutely unsettling. I'll never get used to it. I try. I tell myself that we know this routine. I try to convince myself that everything is fine. I try to find a light place that rings with a sort of sing-songy "here we go again!" But the truth of the matter is that it is always an emergency. It is always frighteningly dreadful. I'm always left with this horrid feeling as if I've been standing still and suddenly shoved from behind with the wind knocked out me while I try to pick myself up off the ground.

My dear Goddesses stood back watching us spring into action, preparing over-night bags, talking to the kids, getting Aria dressed, calling the clinic with a sort of stunned fascination. There was nothing they could do but watch and process their own reactions to the situation. It was almost impossible for them to understand that literally one minute Aria was swimming playfully in the pool and then the next lying on the couch with a temperature. There was no indication of anything happening in between those moments. This is a glaring reminder of the illusion of control. There is no preparation for this kind of thing sometimes and that is a leathery lesson to learn.

Back in the moment, this moment and this now, Aria is feeling better. She is enjoying her morning cartoons and is cheerful. We shall see what the day brings. Indeed there is a great deal of strength from hearing Ewan McGregor’s "come what may" crooning in my ear once again. It will be what it is and I will be equal to it. This is the way of the warrior. This is the way of Aria and it is my privilege and honor to be by her side. ~j