Aria and Hair Loss

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

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



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

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

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

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

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

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

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

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

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

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



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

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

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

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

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

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

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

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

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

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

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

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

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

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

A Bit of the Present (June 2009)

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

June11, 2009
Aria's June Clinic Visit

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Aria's Smile

Reading this now, 16 months later, is an extraordinary thing. It is hard to imagine that I ever worried that Aria would be forever changed by her steroid treatment. At the same time I understand why I had the concerns I did. The changes were so dramatic, so harsh and just so unbelievably real. I supposed mix that together with the overall shock of a cancer diagnosis and it is no wonder that I simply no longer knew what to expect.

This email captures a glimpse of what was lost albeit temporarily and how we began to see it come back.


February 19, 2008
Subject: Aria’s Smile
It is Sunday February 17, 2008. The sun is shining in a crystal clear blue sky. It is a gorgeous day. This is the third day that Aria has been off her steroids and already we are seeing some subtle changes. The most obvious one is that she doesn’t want to eat every single minute of the day. The other is that she is perking up a little. She’s even had a few sassy moments that have required some reminders about her manners. She barked at me this morning, “Mama, just go away!” I didn’t take it personally nor was I angry even though this kind of manner is not acceptable. I gently reminded her, “Aria, if you are trying to tell me that you need to be left alone, I’d like you to make that about yourself and say something like, ‘mama, please give me some space.’ “ Aria immediately practiced that phrase and I responded with an enthusiastic, “Absolutely, I will give you some space! Let me know if you need anything!” It was a nice little interaction and Aria was fully present to it.

She stayed alone on her chair in the kitchen for some time. I would guess a good 15 minutes or more. I was puttering around, picking up toys that Miss-Disaster-Area-Rianna had thrown all over the place when I heard Aria call for me. “Mom, could you come in here for a minute please?” I went to her and she said in a softer almost whimpery voice, “I need my Dad!” I knew that Doc was trying to catch a cat nap on the big bed so I asked her if she wanted to go upstairs and lay down with him. She nodded yes so we promptly went to the big bed. To my complete surprise, when I put her on the bed, she crawled over to Doc and nuzzled right into him as he was arranging the pillows for her. She broke out this beautiful smile and giggle as she wiggled and nestled in close to him. The relief and comfort on her face to be with Doc was extraordinary and unexpected. She lay there staring up at the ceiling playing with her ear and rubbing her eye smiling and sighing. The sense of security she gains from Doc is something truly profound and unique. It was a brilliant moment full of tenderness, warmth and love not to mention tremendous hope and anticipation that Aria is about to emerge from the cocoon she built around herself these past few weeks. I can hardly wait to see the butterfly she has chosen to become!
~j

The nitty-gritty of Aria

My sister Sue asked me to write the nitty-gritty details of what Aria’s treatment was going to look like. I did that in a 6 part series outlining the 5 major phases of treatment: Induction, Consolidation, Interim Maintenance, Delayed Intensification, and Maintenance. It is vital to say that finishing a phase and stepping into the next is like nothing I have experienced before. There is an incredible sense of elation knowing that one major peak in the journey has been conquered but this, for me anyway, was accompanied with a tremendous sense of dread knowing that another phase, equally fearsome and daunting, needed to be faced head on and tackled.

The learning curve that happens is absolutely tremendous. To consider for a moment that only 4 weeks before I wrote this I essentially knew nothing about the world of oncology and at this point I was no expert but I certainly had a handle on the language. Information is powerful. Numbers were something I could understand and therefore they became essential to me, like a life raft in which I found myself gripping its sides. I understood numbers. I may not have understood exactly what they meant but a general idea of their meaning was infinitely better than not having any numbers at all. Because I understood a little, I felt empowered as a participant rather than a helpless victim. I’ve said numerous times that knowing is much better than not knowing even if ‘knowing’ means facing your worst nightmare.

Now knowing and information can also have a distressing side. One can know just enough to set off a series of panic whistles in one’s mind that would easily be silenced if one knew and understood just a little more. I say this, not because it isn’t already obvious but because it is a reminder of survival on a journey such as this to ask for clarification, to make sure everything is understood, to insist on having things repeated again and again and to throw over a cliff’s edge embarrassment, shame, and anxiety about wasting the doctor’s time. These have been rather challenging lessons for me but the humility I’ve learned to exercise in this regard has been exceptionally powerful. Everyone in Aria’s care wants to help. No one wants me to be worried, anxious or upset. No one. Everyone wants the best for Aria, my entire family and I. Period. We all experience situations in our lives that are incredibly difficult and it’s only well after the fact that we think of a list of questions that I we didn’t think to ask at the moment. Intensity and stress will do that and so often in those early days with Dr. Trobaugh I was waiting for another bomb to drop, or I was trying not to vomit or literally fall down that my mind was barely processing every word she was saying. But I learned to call back and get what I needed. I learned to preface conversations without apologizing saying things like, “I need reassurance. Please explain that part again.” Or “It didn’t occur to me at the time but I’ve begun to wonder about…” I’ve learned that they are more than willing to sit and talk and listen and make absolutely certain that everything happening to Aria is well understood.

People have said to me countless times that I’m courageous. I’ve said it to a number of people as well. But let me tell you, it doesn’t require much courage to face the reality of cancer. What requires a great deal of courage, however, is to face the emotional upheaval that comes with it, to face the insecurity of not understanding, to face issues of trust and confidence. These monuments to character building are rough and jagged, and require no particular skill but a great deal of honesty, integrity, courage, tenacity and humility. These are the tools for a journey through cancer and what’s fascinating is they are constantly evolving.

What follows here is an email I wrote basically explaining Aria’s first phase of treatment and what we’d been experiencing. I would encourage you to sit for a moment and ponder everything she had experienced in only 4 weeks. It is absolutely mind-boggling.



Subject: the nitty-gritty of Aria part 5
Date: February 19, 2008 10:49:38 AM PST

I’ve since written a great deal about the past few weeks since we’ve been home from the hospital so, this last piece is more of a summary of what Aria has faced in this first phase of treatment called “INDUCTION”.
Our appointment on Friday February 1, 2008 Aria had her 4th spinal tap and 3rd bone marrow biopsy. The result of that biopsy showed no leukemia cells, which placed her in the category of a ‘Rapid Early Responder”. We have since learned that there is one more lab test that needs to come back clear of leukemia cells before she can be definitively labeled an early responder. We won’t have those results for another week or so. Still, on day 15 of treatment, to have no measurable leukemia cells in the bone marrow is amazing!

On Friday, February 8, 2008, we had another outpatient appointment. It was day 22 of treatment and we didn’t have any procedures. It was such a nice break! She had her last chemo med of vincristine that day as well.

Tomorrow, Friday, February 15, 2008 is day 29 of treatment. She will have her 5th spinal tap and her 4th bone marrow biopsy. Chemo meds will be placed in her spinal fluid at this time, because, once again, leukemia cells are known to hide in the spinal fluid. It will be a long day. Reo doesn’t have school tomorrow so I’ve called ahead and asked for volunteers to come and play withhim. There is a playroom on the 4th floor of the hospital for ‘siblings only’ but Rianna is too young so a volunteer will take Reo. I’ve also asked a friend to deliver balloons to Reo tomorrow as well. It is a huge milestone day for us all. Reo has been so incredible and deserves some extra special attention.

As you know, Aria has been going through some intense changes over the past few weeks. I was told that the steroids would make her weak and that she may not want to walk. I was told that she would get “puffy.” You are all aware of the food cravings I’ve described that are just incredible. I was told that she would have an increase in appetite. I was told that her mood would change. All of this has been very true, but I think it is important to describe exactly what has been happening to Aria and what these changes actually are. I have said before that they have been gradual and subtle.

With respect to her being weak and what that looks like. I think it is important to say that Aria’s weakness has gone hand-in-hand with a sort of apathy. She just has no interest in doing anything. She will maybe once a day get herself to the bathroom but she wants help wiping and getting dressed and getting off the toilet. The one thing she has consistently wanted to do, however, is take her clothes off when she goes to the bathroom. “I’ll do it myself, Mama!” she will say every single time. It is basically the only independent thing she does. Her weakness is coupled with a general malaise. She doesn’t feel well and she doesn’t kid herself. She doesn’t have the energy to even pretend to want to play or color or look at books and pictures. She has no interest whatsoever. She has become increasingly unsteady on her feet. It isn’t like she walks and then crumbles to the floor mid-step. She also doesn’t complain of leg pain or any tingling or discomfort, which I’m told can happen. Instead, she just doesn’t feel like walking or moving. This has been a gradual loss for her. I can remember last week she had a day or two where she wanted to walk up the stairs herself but not anymore. The stairs are completely overwhelming to her now. There have been times when she’ll stand as I’m helping her to dress and her knees will just buckle. It is a distressing sensation that she doesn’t like in the least. So I think that loss of control for her is so unnerving that it is just safer to be carried. She doesn’t whine or whimper about moving and walking but she’s been very clear about her limits and we’ve been respectful of those limits also. I firmly believe it isn’t a matter of her being manipulative. She just has a sense about her, a resignation that speaks volumes and we’ve learned to listen to her cues. It has been so gradual that I think if it were manipulative we would have seen different behavior earlier on and we didn’t. She was completely independent until she just couldn’t manage anymore and the most amazing thing is when she voices her need for what independence she has left, which involves food choices, where she’d like to sit or lay and whether or not she wants to be left alone. We respect all of her decisions. Her leg weakness has been such an enormous change. We are carrying her everywhere now.

In terms of her being puffy. This has been the most dramatic change for me and it has happened in just the last week. Her face is completely round now. Her cheeks are so bloated that she can’t really open her mouth all the way anymore. Her belly is incredibly distended, so much so that her bellybutton pokes out! That is an incredible thing to see and it makes me feel sad. It is a physical manifestation of the medicines that are in her body because of a horrible illness. That reality physically hurts my heart sometimes. She just doesn’t look like herself anymore and it is yet another daily physical reminder of how sick she is. I find myself in conflict over what my intellect tells me is temporary, and drug related but what my emotions scream is a wonder and worry “Will she be like she was before?” It is just the most incredible thing to spend an entire day with a child who just a month ago was playful, joyful and silly and who is now so tired, so worn out, so wasted that life has no pleasure. Yet, the hope that she continually shows us pops up out of the blue to remind us to stay strong. Aria gives us glimpses of herself every single day. We are reminded that she’s still in there. I even asked her this evening, “Aria, are you ok?” she nodded, “yes”. I then asked, “Aria, are you in there?” She turned her head to me and looked me in the eye and nodded “yes”. Aria is in this body-snatcher waiting to emerge once again. I keep imagining the butterfly of Aria waiting to emerge and when I think of it that way, I smile.

Her appetite! OH MY GOD!! Yesterday, she ate an entire loaf of bread..no lie..an entire loaf of homemade peasant type fabulous bread with butter slathered on a mile high. She was in hog heaven! Here’s the deal. As you know, Aria was stuck on noodles and she still eats them every single day at least once! Then she kept craving McDonald’s, which she got more than once and certainly more than she’s eaten in an entire year! It was so gross! Then, just this week completely out of the blue, she said to me, “Hey Mama, you remember that time we went to that one ‘resta-haunt’ where they had that really yummy bread with that white creamy stuff and pizza?” I had no idea what she was talking about. “think, Mama, think!” I asked her, “Aria, do mean Luna’s?” She was so excited and said, “Yeah, Mama, Luna’s! Can we go there??!!”

Folks, you have to understand something about Luna’s. It is one of the swankiest restaurants in Spokane. I have taken the kids there several times over the last few years because the food is amazing and Mama needs a treat once in a while. I’m also a firm believer that if you want your kids to understand restaurant etiquette, then they ought to go to restaurants on occasion that demand a certain type of behavior. The kids always do very well. When I really stop and think about it, yes, the food is more expensive but it is also mostly organic and locally grown food, which is something we support. So, the bottom line, you pay a little more for far healthier food. I was so happy that she was weaning herself off the junk food and allowing herself something a little more wholesome and healthy.

We are convinced that all of the things she’s been experiencing are due to the steroid she’s been on. We’ve also been told that once this drug is out of her body even in the next few days, we ought to start seeing a “different” Aria. We will see more of the little girl we once knew. I really hope so and will try not to hover over her too much watching and waiting. I’m excited for her to start feeling even a little better. I’m ready to start seeing her smile again. I’m ready to start have her be engaged in things she once enjoyed. This has been such a rough thing to witness and we’ve been told that she is handling it really, really well. I can’t imagine what some parents go through when their kids are incredibly agitated and irritable. That must be so hard and wear them down so much in such a different way than what we’ve experienced. In either instance, the hope is that this is something temporary and that thought is such a relief.

This coupled with the fact that the first phase of treatment is almost over. It is a huge milestone, such a big deal and something everyone in the oncology world celebrates with a sigh of both relief and begrudging acceptance of what still lies ahead. In my mind, I have been seeing this part of treatment as a very mountainous environment, which I appreciate is not very clever at all.

This past fall I read an incredible series of books about pioneer women, describing their lives traveling from the east coast to the west and what life was like on a wagon train. The strength of these people and of these women is almost unbelievable. I was particularly awestruck to think about the mountain ranges they traversed in wagons and tried to imagine myself in their situation. It was a useless exercise because for the life of me, I couldn’t picture it. Not for a second could I even sense what they were feeling when faced with mountains in their rickety wagons with all of their possessions and their families. I was reading their diary entries and was completely inspired. It is no accident that I’m seeing this experience as my own kind of mountain. The landscape is lovely, breathtaking really. It is strange too because the mountains I see aren’t before me as if they are a thing to be climbed and conquered. Instead, I am already on the mountain and I’m climbing and I’ve been climbing and it’s been challenging and revealing but manageable. All the while, I’ve had a view of meadows, giving me breathing room. I’ve been able to see clear blue sky, which keeps me looking up. The trees have been very interesting because they are a mix of my own experiences. Some of the trees I see are from the woods where I grew up and spent countless hours playing. Sometimes they are the trees of western Washington where I hiked and became more sensitive to the environment and how all things are connected. Sometimes my view reminds me of a friend’s farm in Pennsylvania I visited only one time but its beauty made a lasting impression. I have the sun’s rays always in view, which is my light at the end of this journey that I’m certain will become more and more magnificent. I recognize that this is all rather cheesy, but I’ve discovered that when I create visualizations of imagery that give me pause, humility, beauty, awe, wonder and peace, I am so much calmer and confident in my step.
~j

The Face of Despair

This email was one of several that was truly cathartic for me. It felt like I put it all out there for everyone and anyone to see and I didn’t have a single care in the world about it. I was in the moment and wanted to share what that moment was like. We all have these moments but we’re private about them and I was too. I felt compelled, however, in this instance to dismantle the myths associated with bravery and courage and strength. This moment taught me beyond a shadow of a doubt that when I’m seemingly my most vulnerable, I’m in reality my truest self. Vulnerability is not weakness but dishonesty and insincerity is. Truth, although painful sometimes, is the only sustaining force that will enable one to endure the battle of Life. It is the weapon of choice for the courageous, the brave and those who dare to be real. I’m simply trying to be one of them.



February 11, 2008
Subject: the face of despair

I hesitated sending this photo taken of me this morning February 11, 2008 but I’ve decided to go ahead for several reason, not the least of which is the need to “keep it real”. So often we hear tales of another’s sorrow and despair but we never really see it. The phrase, “she puts on a brave face” has been ringing in my head all day today and I wonder what exactly that brave face looks like. Is it a face that only smiles and hides the sorrow I think people actually want to witness on some level? Is it a face that is rigid trying to mask despair? Is it a face that shows all emotions when they arise? I don’t know the answer to these questions. I only know that when I feel anything, I feel it deeply and completely. When I feel blue, sad, sorrow or even despair, I have learned that I need to sit with that particular emotion a while. It isn’t my preferred state of being or state of mind, so it is imperative to me to understand why it is presenting itself so that I can reclaim my more comfortable state of mind, which is joyful. I’ve come to realize that my emotions last week of irritation and agitation waned into a dark despair that I carried all weekend long. I can’t say that my sorrow is related to anything in particular, rather it is related to everything in general and that everything became overwhelming these last few days....

I am very happy to report, however, that since this morning, tiny miracles have happened throughout the day that have helped me purge this sadness.

For days my emotions have been just below the surface of my being and they would spill over occasionally and with little warning. I kept having this sense of dread and yet nothing specific would come to mind. It was this constant nagging presence that was picking at me. I felt as if the hope that people were continually giving me and what I was so desperately clinging to was turning to vapor before my very eyes. In its place was darkness and anxiety. I found myself worrying about Aria and I can’t even tell you what exactly I was worrying about; nothing specific and yet everything. I found myself thinking about her being so sick and so fragile and so weak and quickly I would here a voice “shhhhhhhing” me saying things like, “She’s going to be fine! There’s an 85-90% cure rate! Her doctors are so optimistic! She’s doing great!” Another voice would counter with, “Yeah, I know, but what if?.......” I knew this was the voice of anxiety. It always is. Anxiety is the master of creating situations that don’t yet exist and never do come to pass. Still, there it was, following me everywhere I went and with everything I did. I couldn’t escape its grasp and I became so sad, so, so sad. I mentioned to Doc what was going on and how I was feeling so conflicted about what I knew in terms of how I ought to feel so positive and yet I was feeling so negative. Doc, as only he can do, said something to me that nailed my reason for despair. He said to me very gently and tenderly, “Honey, there are no promises and no guarantees.” The air was sucked out of my lungs in an instant for that was exactly my dread. We have to believe and do believe that Aria will be fine. She will be cured and she will go on to live a wonderful and beautiful life but....
Just before I snapped this picture with the handy computer-cam we have, it hit me. For the last few days, this nagging dread, this looming despair has been invisible in a way. So I figured out how to see it.

“Ol’ Henry”, our farmhouse, has a quirky main entrance. When you come through the front door, you are immediately in the dining room! It is so weird and at the same time so grand! It is the meeting place and it is the place where we sort and organize for the day. It is the central station of the house. Over the weekend I noticed that I was resisting the front door. There was an energy there that I didn’t like. It was strange and cold and dark. There was an extraordinary feeling of oppression, not around the farm or the house as a whole, but only the front door. I realized this morning that the oppressive, dark, cold, energy I was so aware of at our front door was Death.

This is the unmentionable. It is the thing we don’t talk about, we don’t face, we don’t include in the pool of options. It is something we all know is the ultimate inevitable but it so rarely lingers on our front doorstep. Yet, that statement isn’t exactly true, is it? We can feel so peaceful about death knocking on the door of someone who has lived a full life and seems ready to go. It seems natural and it is. For many, the process toward death is one of a lingering presence that changes as the inevitable draws near. I don’t know what exactly that change is. I imagine it to be a gentle knocking and an acceptance of knowing what is knocking and then an eventual welcoming as the door is slowly opened and death enters.

It is in no way acceptable that death knocks on the door for children. I think we can all agree on that one! I know many find comfort in looking toward God, knowing he has His reasons for taking a child so soon. I don’t find any comfort there. I have my ideas of heaven and hell and death in general, but that is another email. For now, death is lingering on our doorstep. Our 4 year old daughter is at risk and I must surrender everything to a process I don’t fully understand and certainly have little control over. Rest assured that I don’t hear any knocking nor do I see any attempts to knock. Death is merely a presence..a dark cloud that I go through every time I open the front door. I deliberately take a deep breath now and I stand straight and confidently. My head is held high and I tell myself that we are, in this moment, all alive. I walk through death holding Aria in my arms knowing it is not her time.

Once I realized this, once I had a visual on the source of my despair, I saw my despair join death and I left them together.

“She puts on a brave face!” I am quite certain that I am as brave when I smile full of joy as when I cry with tears staining my cheeks in sorrow.
~j

Aria's habits

I know I’m repeating myself when mentioning the effects of steroids. It cannot, however, be emphasized enough just how profound the changes were and how deeply effected we all were by them.

Giving Aria steroid treatment is something we have to do to this day as part of her chemotherapy. We accept this as it fits in the entire package of treating her cancer. What is so hard to accept, however, even now, is that she has cancer. You may be reading that thinking, “Really, even after a year of dealing with it you’re still having a hard time accepting it?” I would answer an honest and hearty, “Yes.”

On one level I feel defensive and want to say, “Of course I accept that she has cancer. It is what it is and we’ll do whatever is necessary for her!” On another level however, it isn’t that I don’t accept the reality of it, I’m simply still shocked by it. I can’t believe it. Still! It makes me wonder about death, for example, and the initial shock that happens followed by years of what I think would be like shock waves. Moments of heart-wrenching grief and sorrow that sometimes appear out of nowhere making one fall to their knees in sorrow and longing for the deceased. I suppose any tragic event could elicit these shock wave type moments. The steroid treatment is shock wave that I face with Aria every month. It is one of a myriad of things about her entire cancer experience that is shocking and perhaps that’s why it takes so long to accept. Each little thing has to be faced, processed, grieved, accepted and eventually transcended. This is no over-night task. This is not something one accepts and then is able to ‘move on.” Maybe some people can do that, but I’m not one of them.

In many ways I’m still grieving and when I read this email about the incredible changes that happened to Aria in such a short time, it brought me instantly back to that month of wondering if she’d ever come back. The changes were so severe that I kept wondering if I ought to be preparing myself for her to remain this way. It was almost impossible to imagine her coming back and what that would look like. It is essential that I mention that the changes were entirely steroid driven and were in fact temporary. Aria is back better than before!
Subject: Aria’s habits
Date: February 11, 2008 2:59:49 PM PST

In the last week or 10 days, Aria has developed these odd little
‘self-comforting’ habits that are fascinating to observe. On the one
hand, I watch her like a scientist and I feel almost emotionless. I
observe and collect data. On the other hand, I am her mother, so it is all I can do not to be in tears consumed by an overwhelming sense of sorrow. I’ll have you know, I have no problem with tears or with sorrow, but I do have a problem with being consumed by both so that is part of my present battle. I am fighting against being consumed by my anxiety and sadness. Staying in a place of consumption does very little in the big picture of goodness.
Since Aria had her haircut, her ears have been exposed. She loves them! It is like she has discovered them for the first time and perhaps she has because up until this time, they have been hidden beneath long hair! Although, now that I think of it, she wore her hair up a lot and her ears were exposed then, so I think it is safe to conclude that this fascination has more to do with steroids, boredom and comfort than a new physical discovery. Regardless, she plays with them constantly! She folds them forward and back, tucking them in toward her ear canal. She’s also taken to picking at her lips, which has become a little nasty. Her lips are dry and pick-able, but this is something I am urging her to stop doing since infection and lip sores are common enough already. So, I gave her a “lipstick” that she can call her own. I’m hoping that she’ll take to rubbing on the lipstick constantly instead. We shall see.
She also likes to rub her pointer finger over the top of her eye. She gently takes her finger across her eyelid just below where the bone defining where her eye-socket is. Occasionally, she’ll bring her thumb into play as if she’s going to give her skin a little pinch. She is puffy now so I’m sure her eyelids feel swollen and weird, which is why she wants to play with them. I can’t help wondering if she has a strange new sensation when she blinks. It makes me think of how my face feels after going to the dentist and getting numbed up. I feel as if my face is swollen and I can’t help but touch my cheeks to see how disfigured I’ve become. I wonder if it’s a similar feeling for her.
The last thing she’s started doing is to gently pick at her cheeks near her mouth. This is actually quite adorable. She’s taken to eating toast with butter pretty much every single day a few times a day. Toast creates a cascade of crumbs that stick to her mouth and cheeks when she eats. She meticulously picks off the crumbs and continues this new sort of grooming long after the crumbs are gone.
Imagine for a moment putting those three behaviors together. There she sits cross-legged at the kitchen table. When she’s done eating, she often likes to remain in her chair with her head resting on an extended arm. She’ll sit there with only her thoughts. Sometimes her eyes are open and sometimes not. She likes to take her right hand to her right ear and flick the top of her ear over. Her fingers flick and then move to her lips where she gives a quick pick and poke and then upward to her eye socket where she gives her right eye a methodic rub and then her fingers trail down to her cheek where she picks invisible crumbs. Her fingers then race back to the top of her ear and the process is repeated. She can do this for a long time! She’s completely calm and nothing about her movements are stressed or hurried. I sense that she is giving herself some kind of pleasure..a mindless way to pass the time that keeps her connected to the body that is changing so rapidly and feels so sick. I wonder if she feels separated from herself somehow. I wonder if this constant touch keeps her in contact with herself.
These changes have been subtle and slow as I’ve told several of you recently on the telephone. I received quite a bit of warning about possible changes so I felt quite prepared in some ways. However, I’ve come to recognize that these changes are very similar to the process of change I experienced when I was pregnant. I read everything I could possibly get my hands on when I was pregnant with Reo. I noticed that after I had memorized the present month I was in I would skip ahead to the next month or 2 just to see what lay ahead. I remember the anticipation of the changes. I remember wanting to feel pregnant and look pregnant and that feeling and look seemed to take forever! Until suddenly one day, voila! no denying it, I was a butterball! It seemed in some ways to happen over night and yet I know that the changes were subtly happening over days and weeks and months. This is exactly what’s been happening to Aria. As I look at her mood now, which is withdrawn and sad, I can recall the slow process of getting to this point. I was told that she would be hungry and her mood would swing, for example. Indeed over the last 2 weeks she has steadily increased her diet. I hasn’t been like she wants to sit and eat an entire turkey. However, she wants noodles for breakfast and within 30 minutes is hungry for yogurt and she can eat an entire bowl and 30 minutes later she wants toast. It is a constant need to eat something throughout the day as opposed to eating enormous amounts of food at once. Her mood is interesting in that she is 4 years old and already susceptible to an array of emotion throughout the day. What has changed are the triggers that set off her emotions. Toast falling on the floor is life shattering. Having 4 pieces of toast on the plate instead of 2 even though she’ll eat 4 pieces is just too much for her eyes to digest. Rianna coming too close to her makes her scream in a panic. She hates taking a bath, something she loved to do before she got sick. These subtle little changes have created in her a magnificently different Aria. It is a process and we are weathering it as best we can. It helps to document to it and I thank you for providing the venue in which to do just that!
~j


Aria mindlessly picking her lips. You can see how bloated she is and how distended her belly became.


Aria is bending her ear into her ear canal. You can sort of see that her lips are completely dry and covered in sores.


There's another picture of Aria looking at the camera when this series was taken. Most of the time, however, her eyes were closed and this is was her pose.


Even when trying to be playful, she would rub her eyes, face and toy with her ears.