August General Update

August 26, 2008
Subject: General Updates
August 26, 2008

I think it is important for me to once again say, "No news is good news!" I'm beginning to have a better sense of this "maintenance" phase and why people have alluded to its ease and gentle direction toward normalcy. We are fast approaching our first month in maintenance and the relief of Aria's well-being is extraordinary. Her tolerance of the medication/chemo has exceeded my expectations in every respect. We have not yet reached a point in time to know what the long-term tolerance is going to be like, but if the past 4 weeks are any indication, we are anticipating a relatively merciful journey. Aria remains at greater risk for infections, which will have an immediate effect on her counts. Hospitalizations are not unheard of, although less common during this phase. Her medication will be adjusted accordingly throughout her treatment, so really it is a matter of 'maintaining' a level of vigilance and awareness that keeps her as steady as possible.

I write to inform you that I anticipate fewer emails over the course of time. However, I will always write an update whenever Aria is in clinic. Part of my reasoning is to simply have documentation of not only how often we've had to visit clinic but to describe in some detail its purpose. In terms of what happens in between those times, I can already anticipate that I'll be less inclined to write about our daily lives, which really have become rather ordinary, much to my delight. It has occurred to me very recently that my mind has been less occupied with thoughts of cancer and what it means to be a care-taker and how it effects my spirit and my psyche. I'm no longer completely and utterly consumed by these thoughts and I'm rejoicing.

I now have room in my mind for other things. I've been thinking about my creative side and I've begun to express that once again in my sewing studio. I actually have space in my thoughts for seams, button holes and zippers. I look out to my pasture and I see my kitchen garden with a large pumpkin patch and sunflower forest waiting to bring its magic to my gaze next season. I look to my gardens around the farmhouse and although they are in need of serious attention, they are welcoming and inviting. What was so overwhelming, new, daunting and frightening several months ago no longer applies to today nor to our future or so it seems to me now.

I realize fully that I wouldn't have believed anyone if they would have told me a few months ago that I would be feeling this way now. Somewhere in the recesses of my mind, I would acknowledge the sentiment trying to maintain a sense of openness but my heart would be doubtful. 'One can not know what they don't yet know' is a rather moronic thought but this is what rings in my head presently. I embrace completely that I have the perspective I do today because of what I've experienced these past few months. I find it extremely important to say because it is so tempting to advise others from this place of experience in offering well-intentioned reassurance. I remember like it was yesterday the woman who came into our hospital room the morning we were being discharged after an 8 day stay. She was 10 months into the journey so her recollection of her first week was not at all her place of trying to promote that things would be better. She was well on her way into maintenance so for her to relate to me in my state of grief, fear, sudden loss, and sorrow was probably the farthest thing from her mind. She wanted only to tell me that everything was going to improve and I certainly don't blame her for her motivation. However, there was nothing in my immediate experience to allow for the same assurances. As much as I appreciated her visit and her words and experience, I knew that this was something I'd have to experience on my own. I say this because I suspect I will one day find myself in her position and I think it is important for me to consider what I would want to say. I can now reflect and consider those things that might have been helpful and perhaps share that view. Ironically, nothing comes to mind! I can't think of single thing that anyone could have said to me that would have alleviated my anguish. Rather, it is the presence of a listening ear, a compassionate heart and the confidence to sit comfortably with my emotions that seems to me to have been most helpful. I've been blessed to have an abundance of such things and this has contributed most effectively to the confidence I have now to continue on with a much lighter step.

As well as things are, not a day goes by that I don't have some kind of reminder to contend with. I sometimes feel like I'm an untied balloon that is almost nearly full most of the day but something happens throughout its course that allows for just a little air to sneak out. I find myself lighter, floating upward, nearly ready to let go but a reminder enters my consciousness and I sink ever so slightly. I must, with some effort, replace that loss so I can be uplifted once again. Day after day I participate in this ritual of sorts and so it continues......

Allow me to illustrate it for you with a story. Last week, Monday, I took the kids to the dentist for their 6 month check-up and cleaning. It never once occurred to me that Aria's leukemia would feel like a slap in this environment. I knew that I would tell her story and I would receive wide eyed stares and wonderment but I never made a connection that her cancer and its treatment would have any negative consequence on the development and care of her teeth.

I'll tell you that we have a wonderful dentist and her entire staff is remarkable. They are warm and gentle in every possible manner, so going to visit them is rather a nice treat. Imagine how stunned I was to receive my first slap when I was asked to update the kids' records and complete their medical histories. Until this time, Aria's medical history in any documented form has been exclusively reserved for only the oncology clinic. There before me was a familiar medical history form listing all kinds of medical conditions that may or may not be applicable. We've all seen them countless times and this was the first time I'd ever experienced filling one out where I found myself making check marks over and over and over again. It was all I could do not to crumble in tears when I reached the end of the form. It was such a stark reminder of loss. Before the process of her diagnosis in late December 2007 and January 2008, Aria had never once been to the doctor with the exception of well-baby checks. She had never had an antibiotic and I could count on one hand the number of times she needed over-the-counter type medication. Life for her has undeniably changed and separates her completely from the experiences of most 4 year old children. This paper, staring me in the face, was proof of it. Once again, I could feel my heart shatter into a million pieces and the sorrow of what she's lost and had to endure came flooding over my senses.

A peculiar dialogue began between my heart and my mind as it so often does. What I found so stunning was how angry both were;
My mind began with something like, "Julia! For God's sake, stop being so damn melo-dramatic! She's doing so well and this is just now a part of it! Get used to it!"
My heart was taken back by my mind's lack of feeling and it was seething in its defense. "Melo-dramatic? Are you kidding me? Did you not see how many check marks you had to make? What the fuck is your problem?"
Mind quickly snapped, "My problem? What the hell is wrong with you? Why must you insist on staying in your dark little dwelling? Can't you see the light? Can't you recognize the promise? Why must you look back? We are going forward whether you like it or not!"
I'm taking deep, deep breaths. I'm trying to slow my heart rate. I'm trying to calm my mind. Both are racing when a third party shows up unexpectedly. It is my Spirit who says, "What marvelous voices you are. How you compliment one another so well. I sincerely doubt I would be as effective without you so clearly making yourselves known."
My mind and heart are enthralled by my Spirit, who seldom makes such an appearance.
My Spirit continues, "My friends, you needn't be settled in one place or another for you both serve an equal purpose and perspective. Don't you yet realize that you cannot appreciate the light if you don't first appreciate the dark. You cannot understand the catharsis of moving forward if you never glance behind you once in while. In every moment of life you are who you are because of who you were."

I begin to smile. My heart is calm but my mind is rather rigid and a little put out. My Spirit continues soothingly, "So often what you read and so often what you hear about strength and courage and being positive is like a wooly cloak that is rugged and tough but lacks the lining of sincerity that makes it comfortable to wear. You, my friends, are simply creating that lining and you have an opportunity to weave something that is unique and true."
My mind begins to ask a question, "But...."
My Spirit is silent once again.
I'm blinking back tears and I hand over Aria's medical history form to the receptionist. I feel sad but content at the same time. I have a sense of acceptance that is tangible and empowering. I'm well and know I will remain so.

I was later brought back to the area where Aria was having her teeth cleaned. I was told that she was beginning to get upset. I entered the space where she was and saw her on her back stiff as a board. She was nervous and uncomfortable lying ever so slightly tilted backward. I imagined that this position was enough to make her feel like she was going to fall upside down. Her hands were gripping the chair's arms. She was wearing large plastic sunglasses with yellow rims that gave her an exaggerated buggy-eyed fly-like appearance. She took one look at me and burst into tears, "I wanna GO Ho-ho-hoME!" I tried to console her sitting with her on the chair and asked the hygienist if perhaps Aria could sit more upright. She was so accommodating and understanding, encouraging Aria that we were almost finished. She told me that Aria's teeth had been discolored because of the chemotherapy and I swear to you, it wasn't until I was under the lights in that room and hearing her words that I noticed Aria's teeth were dull and yellowed and seeming to become more-so with every passing moment. I had to repeatedly blink my eyes to get the image of her teeth going from a yellowish tinge to a brown rotting mess out of my head. I can laugh about it now but in the moment, I was distressed! She then told me that Aria had a lot of plaque build-up, which is common with chemotherapy. As she was telling me this news, she was continuing to scrape plaque from Aria's teeth. She told me that people with cancer, generally have a great risk of tooth decay so we are going to have to be more aggressive with her cleanings and fluouride treatments. I asked her if she thought Aria's permanent teeth were equally affected and at risk. I was told that she just didn't know but it would be something they would watch very closely. Aria is now going to receive cleanings every 3 months and will be under the watchful eye of her wonderful dentist.

As I said earlier, it never occurred to me to even imagine that Aria's chemotherapy would have anything to do with her teeth. At the same time, who would have thought that one of her medications would make her want to walk on her tippy-toes so much so that she may need leg braces. I'm now wondering about the long-term effects on her eyes and ears, balance and so forth. It is all encompassing.

What I have written here is what it feels like to have a little bit of that air released from the balloon of my spirit. Yet, in the process of this writing, from the corner of my eye I could see Aria walking toward me. I am sitting in our library, which is on the first floor of the house on the west side. There are 2 doors in the library; one that leads to the living room, which is a hub of activity and another door that leads to our mud room where the dogs (all 5) reside. To my left and just behind me is a window that gives me a wonderful view of one of our two crabapple trees. It acts as anchor to one side of a white mesh hammock that is a favorite resting place. It also houses our 3 kitties, who are chased up there on a regular basis by one of our psycho-cat-killing dogs. A variety of birds twitter and play among its branches filling my ears with their chats. I can hear the leaves blowing in the wind and when the kids are outside in the playground, I can hear them in the mix. It is a wonderful and serene place to sit and to write. Just moments ago, Aria was walking through the living toward me. She was wearing her beloved ballerina costume carrying a small bundle with great tenderness. She was tip-toeing not wanting to make a sound. As she approached, I could see that she was carrying one of her baby dolls meticulously swaddled in a hand-made doll's quilt that my mother-in-law made for her. She was nuzzling her baby, stroking the top of her head with her cheek. I whispered, "Is she sleeping?" Aria nodded that she was. I added in another whisper, "My, what a good Mama you are." Aria looked at me flashing a brilliant grin as she was gently rubbing her baby's back and said, "I know. I am a good Mama!" Then without any warning at all, she tore off the baby blanket and threw her dolly in the air tumbling in all directions and squealed, "Wheeeeeeeeeeee!" The baby doll landed with a small thud and Aria raced away to play with Reo. "Come on Reo, let's play swords!" I heard her say. This moment with her, which was no more than a minute or two has filled me to overflowing.

As I end this note, the balloon that is my Spirit is full and beginning to float even though it hesitates. I am lighter despite the weight that we face every day. I suppose in some ways I am learning to truly celebrate the place of balance. The place that is neither light nor dark but the one that meets in the middle. It is neither good nor bad but somewhere in between. It may seem like an obvious place, one where most people reside, but for me, I am in a place in life where this is for the first time truly, sincerely tangible. Funny, but I'm sitting here thinking, with my fingers to my lips trying to find words to express how it is that I feel completely open to "come what may" and at the same time I am full with what has already been. It is a place of pause, I suppose. I'm taking stock and I must tell you that I have a tremendous sense of abundance that is both sustaining and enduring. Tell me, could anyone ask for anything more? ~j