Friday, May 15, 2009

A Weighted Spirit

I know that this blog has sort of sprung out of nowhere. You are reading about my journey after 16 months has already been traveled. You are starting in the middle and so I'm going to add some stories that I wrote along the way these past months and perhaps slowly draw you up to where you find me now. The one I've included here was written just a short time ago on April 29, 2009. I had been in a lengthy reflective period and had not been writing for a few weeks. This is the culmination of that quiet contemplation, which is why it is so lengthy.

"A Weighted Spirit"
2 weeks ago (April 13th and 14th 2009) Aria had her monthly examination with Dr. Trobaugh followed by a spinal tap. The exam happened on a Monday and the spinal tap was the following day. It seems like ages ago. Yesterday (Monday April 27, 2009) Aria returned to clinic for a lab check to see if the increase in her chemo had created any significant shifts in her counts. Everything is fine. She's doing so well.

You know, for a lot of people this is all that ever gets reported. To say that Aria continues to do well is enough. I completely understand why this happens and let me say that what follows here may be entirely projection on my part but I doubt it. You see, the truth is, I've reached a new place on this journey. Exhaustion. For the past 2 weeks I feel like I've been sitting on this very smooth rock in a beautiful valley meadow trying to gather strength. I've been sitting here searching, thinking, wondering, day-dreaming finding myself completely quiet. The scenery has been beautiful and bright. I've noticed how green things are and there are small tender flowers sprouting everywhere. There are bits of pink, purple, yellow and blue in my gaze. The sun is warming and the air is fresh. I, on the hand, have been dark, introspective, and cold. My spirit feels laden with a burden I don't fully recognize. Some of it is the same old thing but there is something new that has forced me to pause. I told a friend that my normally verbose mind has been silent. Instead, what's been going on before my mind's eye has been much like the pictures on those circular cards inserted into a toy view finder. For days and days one image has been followed by an audible spring-like click and then another image appears. Thoughts associated with these images have only just come to me recently and it is those thoughts I'm writing now. I share this with you to offer you another view into our experience that I've only recently fully understood is not ours alone.

The exhaustion I speak of is intense and came like an unannounced storm catching me off guard and unprepared. I've weathered it though and although it was never frightening it was an unyielding presence that I simply had to recognize and learn to understand. Aria has been a master at this all along. She has shown me exactly how to take care. Aria plays when she feels playful. She sleeps when she's tired. She eats when she's hungry. She cries when she's sad. She giggles when delight tickles her. She is always fully present to herself and it is something I admire and hope to claim more of as my own.

After our clinic appointments 2 weeks ago, I was wiped out, I had to simply stop, sit and rest. I had to welcome quiet and seek solitude in the middle of my life that is full of interruption and distraction. I had to turn inward to understand what was happening. It is possible; moments of solitude, intense reflection and quiet can happen in the midst of chaos and kids and it did.

It is so easy in this state of fatigue to give you the truthful but abbreviated version; Everything is fine. Aria is doing so well. I've convinced myself, however, that you want to know more, that you don't mind me giving you all the nitty-gritty details and I'm certain that processing this journey with you this way is healing for me. But I have to tell you, it is numbing sometimes. Step after step after step on the same path of worry, wonder, fear, acceptance, surrender, battle, triumph and redefinition takes a toll. I can see myself trudging along not knowing what to say, feeling like I'm repeating myself because it's the same old view day after day. So I see myself waving my hand at you as I pass by mouthing, "Everything is fine! Aria's doing great!" and as I walk away tears stream down my face. How is this possible? I wonder. How can I feel so heavy in light of Aria doing so well? How is it that I can't acquire enough strength from her wellness to carry on with a lighter step? Why I have reached this place where the view is so large and I'm not able to see all the wonderful details? These are just some of the questions clinging to my spirit weighing it down demanding answers.

The process of discovering answers required me to sit for several days and retrace my steps and consider deeply what had been happening. I needed only to go back about a month to Aria's brief hospitalization in mid March to know that that's where the load began to get heavier and heavier making me feel like my feet were dragging with every step I took bringing me to where I am now. Aria is doing so well but every now and then she's hospitalized which creates this red alert state in which we live for several days before during and after. In this instance, our entire family dealt with a virus that went round and round for weeks constantly threatening another ER trip. We're still dealing with it by the way. Aria got a cold sore the other day and is now on a new antibiotic for 10 days. It is no big deal by itself, but that's the thing. It is another thing on what sometimes feels like a mountain of no-big-deal things. Aria is home from school today because she is tired. I picked her up early from school yesterday because during activity time she put her head on the table and closed her eyes. Is something going to happen? Is she going to suddenly get a fever? Should I prepare my mind-set for another brief hospital stay? Is it too cold for her to play outside? She seems fine but is she? This is the kind of thing that keeps me teetering on a knife's edge and it is so tiring sometimes.

It's worth saying that for the past several weeks, there were many moments when things felt truly relaxed and easy going and I could take in the awesome view but by and large my focus was narrow and edgy. The many threats that circle Aria are never out of my sight. Never. I have moments when I want nothing more than to forget for just a moment.... to simply abandon the reality that she has cancer, that she takes chemo every single day as well as several other drugs to address side effects of her chemo. She has so many more moments during the day when she's just like everyone else but there's always this little invisible tag attached to her that reads, "except." Yeah. Aria is so much like everyone else, except she has this and that and this and that. Step, step, step, I go. It's like looking upon something so pristine and sacred while being constantly stung at the same time. It's painful to look at, to notice and revere but it is equally painful not to look and notice and revere. So I stopped right in my tracks. I stepped off the path, sat upon a rock, closed my eyes and took a look around.

It is hard to accept that I'm tired, that I'm burned out and that I'm sick of this routine that has come to define us. Specifically, I'm sick of having to go clinic every other week and go through the same ritual we do every single time. It's the same drive to the hospital, into the parking garage, passing car after car with God only knows what kind story inside. It's the same elevator ride and race to the clinic door colored with the same loud primary royal blue and red. It's the same attempt to contain Rianna at the same time keeping things fun and light. It's the same intensity and seriousness that grips me and smears my smile. It's the same stress that Aria endures to have her finger poked and blood milked into a tiny vial. It's the same band-aid. It's the same routine to make another appointment. It's the same stagnant air that I seem to gasp for. It's the same sorrow I feel that Aria has to endure this at all. It's the same gratitude I have knowing it could be so much worse. It's burn-out and a sensitivity that others are burned out too. It's a chronic state of worry despite my constant soul searching. It's encountering people who say all the wrong the things but have such good intentions and wonderful hearts. It's having the humility to admit that the burden is heavy and I'm tired of carrying it but knowing full well that I must continue on. It's knowing that I can carry on but I don't want to. It's wanting to pause for just one more minute and not being able to. It's wanting a pity party and feeling sick about it as if I've over-indulged on my own chocolate-woe-is-me cake. It's wanting to deny that I feel sad because I'm still hung up thinking that strength is void of sorrow. It's hearing, seeing and knowing what others are having to endure and encounter. It's absolutely nothing specific but everything in general.

I've been trying to find a sort of balance, which seems to be the trendy word these days. It doesn't really describe what I've been seeking but it will do for now. It is important to go back now to those clinic days a few weeks ago and tell you what happened so you can understand the existential storm that rained upon me afterward.

Monday April 13, 2009 mid-morning, Rianna, Aria and I entered the clinic. There were a few families in the main waiting area and no one in the play room. The kids made a bee-line to the treat basket and then the playroom where we began our lengthy waiting session. I felt almost entirely like myself while I was there. The total stress-fatigue that I had come to know so well was gone. The worry about what Dr. Trobaugh might tell us was no where in sight. I had a real desire to play and color. I wanted to interact with other people and their kids. This was a tangible first for me. Up until this time, play was strained and almost fake, which is not something I want to subscribe to because the kids know when I'm not being genuine despite what I think is an oscar winning performance. I tend to want to sit and talk with other mothers and fathers. I want to learn their stories and know what they are having to endure. I want to understand what their experience has been and how it compares to my own. I want to share experiences and feelings. I want to know and feel that I'm not alone and I've thought about that a lot. It isn't that I'm searching for validation, or even someone who understands this experience because of their own. I've said before that I've met several families with kids who have leukemia and we are as different as night and day. We all come to the table of cancer with totally different life experiences, coping skills and needs. What I'm after isn't similarity per se but companionship. Someone who has been forced on this path as I have and who has had to learn to see what I see. Someone who knows the smell of the clinic despite the fact that there's no way to describe it. Someone who knows what it feels like to have your heart skip a beat whenever the machine that slowly dispenses the chemo goes into a beeping spasm. Someone who is comfortable with the complexity of sorrow that resides beside overwhelming joy. I've met several mothers with whom I feel completely at ease in this regard and I'm so grateful for that. None of those mothers were there that day. That was just fine. I had Doc with me who was so playful with the girls and we had fun. We are so familiar with the clinic. It really has become a home away from home as sad as that is.

As Aria, Rianna and I were coloring I noticed that suddenly the clinic was bustling. People were everywhere it seemed. Not an empty seat was to be seen and kids were all over the place. What struck me like the point of arrow forcing me to cringe in a desperate kind of pain was that not one of these faces were familiar. There were dozens of people and I knew no one. Suddenly the scope of cancer in general became enormous and I felt very small. We are one family out of millions and millions of families who are touched by cancer in one way or another. I remember sitting at table with Rianna and just shaking my head at that reality and not knowing what do with it. It was such a helpless feeling. Then, suddenly, she came into the playroom with her son. She caught my eye immediately because she was unlike many of the people I typically see in clinic. She was extremely stylish wearing these funky horn-rimmed glasses and looked like she has waltzed right out of the 50's all the while swirling so every decade that came after clothed her and the end result came walking into the playroom with all the confidence in the world. I liked her immediately. She had an enthusiasm about her that was completely contagious. She sat on the floor with her son and started to make a puzzle. I was having a conversation with someone else when she unapologetically interrupted and chimed in with her own story. I thought, "Who is this woman? I love her!" I just smiled at her and continued to wonder and marvel. "Could it be that I've met someone with a personality as large as my own?" It was like someone had opened a window and finally some fresh air came into the room. Suddenly, she and I were in the throws of discussing what was happening. I don't know what happened to the person to whom I was speaking just minutes before and I barely remember what happened to the kids so engrossed was I with this new found person clearly of my tribe. Her confidence and cheer were breath-taking to me and I kept wondering where she is on the journey. She seemed like such a seasoned pro but it was odd to think that we'd never crossed paths until this day. Just as I was about to ask her what her story was, Sherri, the family advocate came into the room and sat down beside me. She said, "Oh good, I'm glad you two have met. I just knew you would like each other!" We laughed because we hadn't met. I didn't know her name, her son's name or anything about her really.

Formal introductions were made and she began to tell me her story. She isn't a seasoned pro. Her son was diagnosed with a rare form of leukemia only 2 months ago. His only treatment option is a bone marrow transplant and at the time of our conversation they were in the throws of searching for a match. They have since found a perfect match and she and her son will be moving to Seattle in a few days where their lives will be nothing but clinic, hospital treatment, medicine, healing, sickness, praying, worrying, moments, etc..etc.. for several months. Her son's prognosis is 50/50. She said very candidly, "I'm well aware that this bone marrow transplant with either cure him or kill him." How does someone so new to this journey have that kind of confidence and pragmatic zeal? I was stunned by her in the best of ways. She told me that her son was ill with flu like symptoms for a few days before he was diagnosed and wasn't getting better. Their doctor did some testing and sure enough they were immediately admitted. He, like Aria, had a very short hospital stay initially and since the end of February has had several blood transfusions but everything else has been on hold until they could find a bone marrow match. Her son is 3 years old.

She told me this as if she's told this story a hundred times already. She was guarded void of emotion as if she was issuing a status report. I understoodd her armor and why it was there and at the same I could see that there's so much more. I noticed that the puzzle her son had selected was too advanced for him and so they were shuffling pieces around as opposed to assembling them. I understood this kind of distracted play and desire to be present but not really being able to. I asked her, "So, how are you?" She sat very quietly and although I couldn't see her tears I know they were pooling. Sherri put her hand on her shoulder and told her that it was ok. She responded with such grace and sincerity. It was very clear to me that she is chief of her village so this happening to her has been completely disruptive to her entire tribe. I understand why she needs to be so strong and I admired her tremendously for knowing after such a short time that she's safe in the clinic. She can put aside her armor and just be and she was.

What she faces is so immense. It is a nightmare that I hope I never have to know despite the fact that I want to know every moment of her journey. She showed cards she printed about her son. She's already arranged for a city-wide blood drive and bone marrow donor sight. She's the type of woman who knows how to rally the troops and I can only imagine the throngs of people ready to offer their aid. At the same time, there is no mistake that when she leaves, life as she knew it will be but a shadow. She has 2 older children who will remain here with her husband. This kind of separation...I just can not imagine.

I sat there listening to her, ingesting every word and image of her and her story. I felt so helpless. I wanted to offer her something; some kind of comfort and understanding but I have no idea what life is like for her and going to be like for her, so I felt empty-handed. I gave her my sincerity and my honesty. I told her that I don't understand what she's going to have to experience but that I want to and would encourage her to share it with me if she was so inclined. I told her that I was sorry life handed her this fate. I told her that what she is facing frightens me but seeing her courage and strength empowers me. She looked at me with complete understanding and asked, "Are you a Leo or something?" Did I mention that I immediately fell in love with this woman? I grinned from ear to ear and told her, "No, I'm a Scorpio." "Oh, that explains it!" she exclaimed and together we laughed and laughed and laughed. It was one of the most healing moments for me. I have met a kindred spirit and even though I won't really be able to get to know her well over the coming months I sense that I will always know her. I feel safer on my own journey with that in my pocket.

It was Aria's turn for her lab draw and so we departed. By the time we came back she was gone busy with her own examination and lab tests for her son. Rianna needed her diaper changed and so I left to take care of that. When I came back there were several staff members, Doc and Aria among other families and patients surrounding a teenaged girl and her mother. Krista was playing the guitar and everyone was singing and applauding. This was her last day of treatment and this was her celebration. I walked in beaming knowing how profound this moment was for this girl and her mom. I looked over at Doc, who sat on the built in ship in the main waiting area with tears streaming down his face. It was such a moving moment. Several people came up to me with tears in their eyes saying, "This will be you some day." Naturally the tears came for me as well. Someday. Indeed, someday that will be Aria.

I approached this mother and her daughter and expressed my deepest congratulations and joy. I told her daughter, "I am so proud of you. You are my hero! What an amazing young woman you are! Well done..good for you!! Today is about celebrating you!" They beamed at me and nodded wiping their tears. We were silent a moment staring at this beautiful young girl with purple streaks in her hair when I asked, "So now what?" Her mother looked at me with that unique mix of joy and sorrow I'm coming to know so well and said, "Well, we'll be coming back to clinic about every 3 months for the next 10 years and then after that..." she paused and looked at her daughter who smiled, "who knows." This was yet another moment for me when I felt like I was falling down. I'm pretty sure I didn't say what was screaming in my head, "10 Years? I'm sorry..d-d-d-did you just say 10 years?" I think I was able to stutter and spit something like, "Wow. I-I-I don't know what to say." I remember the mother looking at me and shrugging her shoulders, "Yeah, what-are-ya-gonna-do?" I know that entanglement of acceptance and surrender. I know how one minute it feels choking and the next, like life line. As I left them the mother and I exchanged a knowing glanced, smiled at one another and with a small bow to them I sent a blessing acknowledging their sacredness.

I returned to the playroom with the kids and played. The others that were in the room were so private, guarded and tired. I knew they didn't want to be engaged or didn't know how so I left them alone with their thoughts. Finally it was our turn to see Dr. Trobaugh. Aria's ANC was 1911 and all of her other blood work looked terrific. Dr. Trobaugh decided to increase her chemotherapy just slightly. "Baby steps." she said. We told her that there was nothing significant to report because Aria was doing so well. Dr. Trobaugh smiled from the top of her head to the tips of her toes. I could just sense it happening. She was focused as she always is but a little less playful and I figured that was reflective of the number of new cases mingling in the waiting area. She apologized that we had to wait so long but we reminded her of how unnecessary that was. We told her that we recognized that she was, unfortunately, very busy. She let out a deep sigh, something I'm not sure she aware of and nodded 'yes.' That was all she revealed and all she needed to.

We mentioned that our only real concern for Aria at this point is her barrel shaped tummy, her appetite and her weight. We know that children on prolonged steroid use are at a greater risk for obesity and subsequent Type 2 diabetes. Aria's appetite is sometimes off the charts especially when she's on steroids. She could eat all day long if I allowed it and I'm not talking about grazing a carrot here and there. I'm talking about eating a full sandwich and apple and then mentioning being hungry for McDonalds. Once she's denied that she'll mention her list of favorite foods; shrimp circles, purple shell noodles, King Yen noodles, pizza, did I forget to mention purple shell noodles and then there's the purple shell noodles and oh we mustn't forget the purple shell noodles. This goes on all day long for a good 10 days in a row. It is so exhausting and tests my patience to the very limits. Trust me, it is awful to admit that I often don't have the patience necessary to deal with this kind of persistence day in and day out despite how easy and transparent it all is. This is just one of the things that adds to my sorrow. Don't worry, I don't expect myself to be super-human. I give myself plenty of latitude but the truth is, it hurts to be cross with her and to be sick of her constant demands when the reason behind what motivates her behavior is beyond her control. It is beyond her entirely and acts as a glaring reminder of what's happening. The weight of that and sometime my inability to carry it properly hurts. It just plain hurts.

Dr. Trobaugh mentioned that looking Aria does not raise any red flags for her but she took a moment to plot her growth chart. Aria is now in the 95th % for her height/weight ratio which is a significant increase from the 50th% when she started treatment. It is a trend that we don't want to see continue so we discussed the things that we've already started to implement at home. We are restricting the number of treats she has and we are watching her portion sizes. Trust me, it is a challenge because when Aria is on steroids she really does feel as if she's starving. Food is such a comfort for her and it seems to me that she's only had a few months where she's truly and fully resembled her old self. I know that once the weather improves, we'll be outside playing and running around. Summer will be here and she'll be swimming so I'm not overly concerned but it is one more thing to think of though. One more thing to confront and consider. It is another thing I carry in my bulging pocket.

After being in clinic for 3 hours we finally went home. I was completely exhausted feeling as if I had experienced the full spectrum of emotion in this world of cancer we now call our own. Later in the evening after the kids had gone to bed I talked to Doc about it. I mentioned to him how nervous I felt about the spinal tap the following morning. I said, "You know, no matter how many of these she's already had, I'll never get used to it. " Doc looked at me sort of
incredulously and said, "Well, I certainly hope not!" This made me feel validated. I don't know what it is folks but I put myself in this frame of mind where I think I need to be more go-with-the-flow, shrug my shoulders what-are-ya-gonna-do, not think about it too much. The truth is, I'm not wired that way and I don't know that anyone is. I don't know. Is it possible to watch your child go under sedation and have a giant needle inserted into her spinal column injecting chemotherapy and not be disturbed, dismayed and completely uncomfortable? I don't know. Maybe there's a desensitization process that happens but I certainly haven't experienced it yet. The thought of her spinal tap worried me up one side and down the other. The thought of being in clinic another day for hours and hours surrounded by people and their horror stories. It feels like it's too much and yet it is what it is. I started thinking of how much time we were going to spend in the clinic yet again and I asked Doc, "Honey, why don't they just give her the vincristine (her big gun monthly chemo) while she's accessed and sedated in the procedure room. That way we wouldn't have to wait for the vincristine to be ordered, received and administered." Doc looked at me and paused. He said very slowly and simply, "Honey, intrathecal (meaning in the spinal fluid) vincristine is fatal." What happened next, I don't know. It was the strangest blow I felt. It was like a cross between being punch in the stomach, falling and having the wind knocked out of me and having a load or rocks fall upon my shoulders all at once. His voice rang in my head. "Intrathecal vincristine is fatal."

This is why this journey is so hard. There are turns and steps and hills and moments when things are truly life threatening and they are constantly there. Sometimes they are almost invisible. Almost. Sometimes they are small and easy to stomp upon, which makes me feel so strong and powerful. Sometimes they are large and scary, making me feel weak and sad. This is my view. This is our journey. Aria takes chemotherapy to treat a life threatening disease that if given in the wrong place would kill her almost instantly. I said to Doc, "God! I had no idea! So they don't even keep vincristine in the room or something? It has to kept separate?" Doc said, "Absolutely. They don't keep that kind of drug anywhere near the procedure room. The process of bringing that kind of chemo onto the hospital floor has to be strictly followed so no mistakes are made." I wanted to cut corners to save a little time, maybe 15 or 30 minutes but in this environment time is precious, moments are savored because the surroundings are so extreme. Doc gave me a big hug and said that he's nervous too. He told me that he feels stressed and tired and sad. He told me, "Honey, living with chronic illness is a stress like no other. We're doing it! Every day we're doing it! We're facing it and we're dealing with it! Every day she's getting better and closer to the end and then every day after that...well, we'll just see." I let myself cry a little and then went to the computer one last time to check for new emails. I needed a distraction to end this day.

She had found me on Facebook and asked to be friends, which I replied to immediately! I knew she and I were tribe! I've thought about that recently and I've decided that she is most definitely the chief and I'm the witch doctor!

The following morning, Tuesday April 14th, we entered the clinic around 7 30 am. We decided to keep Reo out of school so he could be with Aria. He talked about it a lot and knew what clinic meant for her this day and he wanted to be involved. There were 2 families in the clinic already. One family, a man, woman, an infant kept to themselves in the main waiting area. They appeared by their dress to be Eastern European and when their interpreter showed up I was pretty certain my hunch was correct. In the playroom, there was a dad and his twin sons. His boys were 10, I think, but they may have been older. One of the boys has lymphoma and today was his last day of treatment! Dad was thrilled and overjoyed and so were we. What a day for them. They were planning on being in clinic for the entire day for a host of lab tests, cat scans and so forth but still no more chemo after today. We talked and talked about their journey and what it has been like for them. They travel a few hours to get to clinic and have been doing that for about 2 years. He commented on how tiring it is, how exhausting it is to see so many little kids so sick and their families...His voiced trailed. He mentioned that it's hard being in clinic because sometimes he just doesn't want to know what others are having to deal with. I laughed because I understand that completely. I mentioned, "Yeah, it's like wanting to stick your fingers in your ears and say la-la-la-la-la all the while wearing blinders so you don't have to see. " He gave me an enormous grin and said, "exactly!" We laughed knowing how futile that is but the desire to do it is nevertheless there. We talked about steroids, chemotherapy in general and how life takes on a new normal. We talked about the temptation of wanting to go back to the way life 'used to be' and how impossible that is. We talked about how hard it sometimes is to embrace life as it is now. He said, "I feel like I can't let my guard down. We're always worrying and wondering." I sighed knowing exactly what he meant. We talked about farming, gardening, raising chickens and the weather. It was snowing outside and we mentioned how long the winter was this year. We both agreed that we'd all feel so much better when we could be outside playing! His boys were quiet reading books. One had hidden himself among the different shaped gym mats that he'd built into a sort of fort. I thought that was such clever way of blocking out what he didn't want to see.

It was nearly 8 30am and the clinic was bustling once again with faces I'd never seen before. Aria and Doc left for her procedure and the kids and I played. I didn't talk to a single family. I can't remember what I did exactly. I played with Reo and Rianna. We wandered the halls, snacked on crap food and waited. The environment felt overwhelming. Suddenly cancer in general felt bigger than ever and it was rather crushing. Fortunately, Aria's procedure was over before we knew it and we were ready to see her. When I walked into the procedure room with Reo and Rianna, the strangest thing happened. We came in a different door than the one we were used to and when the door open this rush of intensity came like a deluge. I was scared and immediately thought, "Oh my God! What's happened?!" The room was warm. The light was bright. There were dozens of nurses and support staff all over the place. They seemed to be moving quickly and at the same time in slow motion. It was the oddest thing. The three procedure spaces were occupied; the little infant from the early morning in the first one, a little girl who I'd never seen in the middle and Aria, who was still sound asleep in the last one. Reo and Rianna were thrilled to see Aria and Doc but were a little too noisy and wiggly for the intensity in the room. There wasn't anything playful about this space and these perfectly healthy vibrant kids were completely out of place. Doc took them so they could get Aria something to eat while I went to Aria's side. The oxygen tube was next to her face making a loud low pitch hissing sound. I hated it immediately. I don't know why. It's scary, loud, weird, not something a 5 year old should have in their face and another reminder of why we're there. Something so trivial, so everyday for the people who work in this world was something big for me. Aria kept sleeping. I was getting nervous. The energy of the room wasn't right. Something was wrong. I looked over at the other kids and the bed with the infant and her Eastern European parents was surrounded by people. Everyone was wearing a mask and gown moving deliberately and with great focus. I didn't like watching them and yet couldn't take my eyes off of them. The mother looked over at me and we locked eyes for what seemed like a long time. Her brown eyes were enormous and bewildered, almost angry in their intensity like a lioness protecting her cub. I couldn't tell if she was trying to tell me to quit looking at her or what. Regardless I couldn't pull my gaze from her. I tried to return a look that was soft and gentle and I remember thinking, "Bless this family!" She gave me a piercing glance and then turned to her baby. My heart ached for her and I wondered what they were dealing with. I met the mother of the little girl in the middle. They are just about to begin maintenance for her daughter's ALL and she asked me how that was going for us. I briefly told her that in so many ways it is better but it's still really hard. I said, "Here we are again and we've been doing this for over a year already." She took a deep breath and we both said almost simultaneously, "This is such long road!" As her daughter's bed was being wheeled away we laughed and waved. "See you around!" I turned to Aria, who was STILL sleeping. I didn't like that at all. It seemed to me that she needed to be waking up so the minute her nurse left I started poking her. I know. I was totally reacting to my stress but I did it anyway. Don't worry, I didn't pinch her but I did rub her head and say, "Aria, it's time to wake up! Come on. Wake up!" Finally she started to stir. Phew! What a relief. Within minutes, she was sitting up chatting away wondering where her food was. She wanted the electrodes taken off her immediately so she began peeling those away. Her nursed helped her and as soon as those were off, so were we.

We returned to the playroom where she feasted on left-over pizza and coke, which is what she wanted. The playroom was packed and fortunately Aria had just barely sat down to eat before it was time for her to get her vincristine and be de-accessed. In the meantime, a new family appeared. Again, by their appearance alone, I assume they were mennonites. There were 3 girls all dressed alike along with their parents and grandparents. They looked completely overwhelmed and out of place. I thought to myself, "Holy cow, if I'm overwhelmed, imagine what these people are dealing with!" Their middle daughter who has Down's syndrome also has ALL. So imagine that on top of being in an environment that is overflowing with things that are outside the realm of their values. The grandmother sat in the playroom absolutely wide eyed. I sat across from her and just smiled and introduced myself. She was so sweet and her smile was so genuine. Her daughter was in the hallway speaking German to her husband while she and I had the nicest conversation. Her 3 grandchildren, meanwhile, were glued to the television. Someone had started a Dora tape and the girls were enchanted. GrandMa just rolled her eyes. I wondered how many other things like this they are simply going to have to accept as a part of this experience.

Finally, we were ready to head for home. We'd been in clinic for 3 hours! I felt like another hurdle had been jumped and we were well. What a relief!!

Later in the afternoon, she called on the phone and said, "Julia, I just couldn't resist. I feel like I have just found my newest very bestest friend that I can't get enough of!" I laughed and laughed. Oh, the stress of the day was washing away with her voice of understanding and friendship. We talked for well over an hour solidifying what we already knew. We can trust each other. We are friends.

Aria has been able to attend school every single day. She naps every afternoon but is playful and full of life. She's had the sniffles for about 2 weeks straight and a productive cough but nothing more. We've all had variations of the sniffles, a cough and sore throat. I can't tell you how ready I am to open the windows and get some fresh air circulating but that is still a few weeks away. I can sense it though and so I'm excited and hopeful.

Yesterday's lab work and clinic visit was just terrific. Aria's ANC has risen to 2961, which is outside the target range but Dr. Trobaugh doesn't want to increase her chemotherapy just yet. With Aria's cold sore and her chronic sniffles, Dr. Trobaugh would prefer to be a little more conservative keeping her immune system a little higher while she deals with whatever virus is trying to take hold. We return to clinic in another 2 weeks for her vincristine, lab and examination. We'll discuss increasing her chemo then. For now, we're just plugging right along.

I'm getting ready to leave my rock-perch but here's the thing; I've reached this place along this part of the journey where I feel compelled to tell you that it must be o.k. that I've been here. What I mean by being here is being exhausted, being dark and a little sad, being somewhat overwhelmed, being heavy. You may be reading that and thinking, "Well, of course it is Julia! I can't imagine! You must be exhausted. Anyone in your shoes would be!" But I'd challenge you to recognize that this is merely an intellectual acknowledgment. Time and time again people say to me, "Oh, you must be so tired of this! I just can't imagine." This is spoken on an exaggerated exhale as if the one speaking is about to collapse. Not surprisingly however, it is quickly followed by a gasping inhale that resounds with something like, "But Aria is doing so well! You must be so happy!" I am happy that Aria is doing so well but her wellness isn't enough to restore my energy reserves and keep me in a place of joy. That's the emotional reality right now. Her doing so well ought to be thoroughly uplifting keeping me care-free and light. However, it is more complicated than that. Aria's cancer is not happening in isolation. I am constantly surrounded by others and their stories and experiences. I could try to ignore them and not allow them in but I think that would take a great deal more effort and leave me with a life less rich. It's difficult to teeter on the edge of 'everything is so great' and 'not so great'. It doesn't make it easier having to support others who are grappling with their inability to cope with the struggle they see in me. Forgive me if that sounds a bit harsh, but it is a dark truth. It's a bitter pill to know that we still have a year of treatment to go and then yearS of follow-up after that. Even then, I'm not sure it's really 'over'. I'm beginning to understand that cure isn't the destination. The destination is the journey itself. They are one in the same. The journey for the last few weeks has been coming to a realization and acceptance that it isn't a matter of being either happy or sad, tired or energized, doubtful or hopeful. I've been able to recognize that it is the presence of this duality that has worn me down and caused me to pause. On one hand I'm told that I am justified in feeling burned out but on the other hand, I ought to be rejoicing in wellness. This back and forth thing has been going on for a long time and I don't know which way to go. It is only since I've paused to look around that I realize it isn't really a crossroads that I'm facing. I don't have to go one way or the other. It isn't an either/or I'm presented. Aria isn't either well or sick. I'm not either happy or sad about her situation. I'm not functioning in a state of being either tired or energized to carry on. I'm a little bit of both and I'm learning how to travel with this 'bothness.' It is a union of these light and dark aspects and I have to tell you, I'm not very good at walking it yet. It's so weird. It seems like the path under my feet has narrowed to a single file step and I keep wanting to step off the path onto one side or the other. But those places are really pokey and they scratch my chins! It isn't like I'm trying to avoid either side but rather I'm trying to improve my balance so I can walk a narrower path with a steady step. What's even more amazing is the view is even bigger and beginning to be clearer once again. The details are coming back in to focus.

The rest I've had has been so healing. I needed every bit of it. I'm now taking a deep deep breath. If you can see me, I'm still sitting on my rock but I have my pack on with all my tools and I'm ready to go. My pockets are full and weighted but balanced. It is with a slap of my hands upon my thighs that I rise and step upon my narrow path. There's a small smile on my face and a twinkle in my eye. I'm off once again. Everything is fine. Aria is doing so well. ~j


  1. WoW Julia! Your truths are so HOT. Take this fire and shine with it. I look forward to hearing about your new playfriends and so happy to be one of them. h.

  2. Your transparency is remarkable.

    I lovelive how Gratitude and Grief can sit comfortably, shoulder to shoulder, in a companionable silence.

    I continue to send prevailing energy your way.

    ~Tattoo Girl

  3. Julia--I am sure that you don't remember our family--but we met you and sweet Aria back in January 2008, shortly after her diagnosis, I think during your first hospital stay. My 2 1/2 year old son Bradley was getting an IGG treatment for his ITP. We had thought he may have leukemia during out initial stay at the end of December. I was in the playroom and you were in with Aria and a friend who brought her a quilt, I think, and I was so touched by your sweet spirit and the way you talked with Aria and your friend. I have often thought of Aria and wondered how she was doing. On a whim I googled her name and found a few posts on Farm Girl and was thrilled to find your blog. I will continue to pray for your family--after living for just a brief time on the oncology wing and the outpatient clinic--I to see the world differently--and you are part of that experience for me. May God bless you with strength to face each new challenge. Love, Rachelle