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