1st Maintenance Friday Clinic

August 19, 2008
Subject: 1st maintenance Friday clinic

It is Saturday morning August 16, 2008. Yesterday we went to clinic so that Aria could have her finger poked, vitals taken and so forth. She has put on a little weight, which is good and has grown in height a little too. I can't remember the exact numbers now. Suffice it to say, that she is growing in the right direction. Her finger poke went without incident and we were able to follow-up with Dr. Trobaugh's nurse, Mary, about how Aria has been doing. We are so pleased with her tolerance of the medication so far. She experienced a bit of nausea only one time following her procedure 2 weeks ago and has had nothing since. It is such a huge relief. Aria seems like her old self in almost every way and I can't tell you how marvelous that feels to me. For the first time since January, I feel like the ground beneath my feet is firm and I feel like I am firm as well. It is exhilarating.

We stayed at the clinic for only a short time. I have to say, the environment felt very festive and fun. Aria did not want to leave before she had an opportunity to play with her beloved Krista. They have a game that they play and Aria pouted when she learned that we were ready to go. She actually more than pouted; tears welled, her shoulders sank and she stomped her feet. Reo chimed in, too, with a hearty, "I don't want to go yet either MOM!" I was over-ruled in the matter so we stayed for a while and played. How's that for a transition? Aria and Krista played. Rianna romped here and there while Reo played on foam blocks he loves to pile and then knock down with a mighty, "T-I-M-B-E-R!!!!" Good wholesome fun was had by all.

You know what? Clinic remains a twisted perspective of fun. There's this desire to think, "See? We're having fun. See? No one here is horribly ill. See? All is well....right? It is ok....right?" I know darn well that it isn't and I know that this fun is a mask, a thin veneer hiding what lies just beneath the surface. I find this a struggle most of the time. It is what I know and understand as an adult, parent and mother all the while I am surrounded by the blissful innocence of children. I'd love to be able to forget and dive deep into the play and amusement of these kids but I can't. I don't think anyone expects this of me and I certainly don't want to pretend to be having fun when I'm not or to 'put on that brave face' when it may very well compromise my sincerity. I just can't be fake. I must live true. At the same time, I'm learning to abandon myself a little and ride the whims of these kids. I'm learning to allow myself to release my practical side somewhat and be guided by them. I found myself having fun almost despite myself and this was a wonderful thing!

I was sitting down watching the kids play and interacting when I struck up a conversation with a mother sitting next to me. She and her son were new to me so I decided to introduce myself. I felt lighthearted and social. The atmosphere was truly celebratory. I mentioned that I hadn't seen her around before, although she looked very comfortable like she knew this place well. She told me that this was the second go-round for her son who is, I'm guessing, 10 years old. Last summer he was diagnosed with an aggressive lymphoma and received a bone marrow transplant. He had been doing very well until this past summer when he was diagnosed with a secondary cancer; leukemia. He is currently in remission after receiving extensive chemotherapy already and will probably have another bone marrow transplant in the Fall. Secondary cancers as a result of treatment are common I've learned and leukemia is very common. This is a horribly bitter pill. This woman was matter of fact in her telling of her story, all the while I was speechless. I found my eyes searching hers wondering, "How do you do it? How do you have the courage to face this all over again?" I was silently listening and internally screaming. It was the strangest sensation that I've had countless times now. One would think I would grow accustomed to it or at least come to expect it, but I don't. I still sometimes feel suspended in reality as if I'm a complete stranger to the people and the environment I've come to know so well. She shrugged her shoulders in a resigned, "What are ya gonna do?" sort of way. I ached for her and I breathed deeply for myself. It was yet again a glaring reminder that part of my coping is not allowing my guard down too far. Maybe this is all illusion but for now my mind and my heart agree that I can superficially embrace that things are well but at the same time I have to brace myself for the possibility that anything can happen.

As I write this it seems almost obvious and I can hear the nagging little voices in my head saying things like, "Of course Julia! Of course you can't fully dwell in the place that everything is fine. You still have a long way to go and when you reach the end there are a host of unknowns yet to be met. You know as well as anybody that there are no guarantees."
My heart retorts, "Yes, dear mind, I know this but what I wouldn't do to feel differently. What I wouldn't do for the bliss of knowing all was well with my children. What I wouldn't do to simply toy with worries that live only in my imagination as opposed to having to actually face them every single day mixed among a million moments that are brilliantly wonderful. What I wouldn't do to be able to separate myself from the people I encounter in the clinic every 2 weeks. What I wouldn't do to be able to feel like I did before Aria got sick. What I wouldn't do to be able to fully accept my life as it is."
My mind listens deeply and gently hugs my heart and says, "You know, to hold your yesterdays in your pocket only serves to inhibit your being present to face your life as it is."
My heart is quiet. My mind and my heart are together in a tender embrace and when I look up I realize that I'm sitting quietly with my head bowed. I'm smiling.

It is now Tuesday August 19, 2008. It is the fault of my Goddesses, Jeannie and Ellie, who came to visit this weekend and brought me joy, laughter, good conversation, distraction and sisterhood, that I am so delinquent in getting this update out to you. They are food for my soul and it was wonderful having them with me. We rejoiced often at how well Aria is. How well she looks. How much energy she has and how joyful she is. I found myself spending a lot of time in those observations and it was powerfully healing. It is a humbling experience to be with people who have seen Aria during very low times and now see her so much improved. In fact, if it wasn't for that fact that her hair is only just beginning to come back, I sincerely doubt anyone would know she was still fighting a life threatening illness. It is humbling because as her mother I can't help but think that it would be much easier and emotionally safer for me to stay in a place that was 'on alert' most of the time ignoring the fact that life for us is very different than what it was 7 months ago. It is very different than what it was even a month ago. This change has been nothing but positive but I tell you, it is so tempting to remain in thoughts that end with "but.....". Aria is doing great, but.....Aria will be able to go back to school, but......Aria's energy is back to normal, but..... I can't help but wonder if this "but...." is another way to safeguard me from being turned completely upside down and stunned at what Life can hurl. My Goddesses helped me see and feel and sense that to rejoice in the moment that is quickly followed by a "but....." is futile and stagnating. It's like pedaling forward and then backward. Forward and back. Forward and back and after a while facing the inevitable question, "Why aren't I getting anywhere?" It's like trying to light a match in the wind knowing full well that it is an act of absurd desperation. Still, I swear to you, it is so tempting because it is safe. I light the match in the wind because at least I'm doing something. I pedal forward and backward because at least I'm sort of moving. I celebrate her improvement recognizing it for what it is but I protect myself because I'm afraid of what could happen. This experience has shattered my sense of security and in some ways this is not a bad thing.

The problem is that I haven't fully accepted that my sense of security, my ideas of control were nothing more than fabrication. I'm certain that once I do, I'll no longer need to use the word 'but...." I'll be able to look at Aria, marvel at her wellness, relaxing in a moment of thanksgiving. For now, I'm not there yet. I'm still scared to death. My Goddesses, who have not been with Aria every single day, have a broader perspective and were so good to help me look up and away and see how big the picture of Aria's experience has become. I've been so keenly focused, so guarded, so regimented that I haven't made time to look around and really take in the view. My Goddesses are cherished friends who gently lifted my head and took care of things around me so I look deeply. It would be easier to stay in a pattern that is familiar and pointless but it sure wouldn't take me anywhere. I am so thankful for their time with us!

Friday afternoon we got a call from the clinic with Aria's test results. Her ANC skyrocketed to 5700. Her hematocrit was nearly normal at 32 and her platelets were well above 250,000. This was fantastic with the itsy-bisty exception that her ANC is too high. For the phase of maintenance her ANC needs to stay within the range of 500 - 1500. An ANC of 5700 simply means that either her chemo medication has not fully kicked in yet, or that the dosing is too low. We're in a wait and see pattern now for the next several weeks. This is not new information, by the way. I feel like we were well prepared to deal with the fact her meds would more than likely need 'tweaking' on a fairly regular basis for the first few months. We've been doing this for 18 days. We're doing well. Aria goes back to clinic in 2 weeks. At that time, she'll have a full exam with Dr. Trobaugh, lab work will be done and she'll receive her monthly injection of vincristine and she'll take her 5 day course of steroids.

I dread steroid days. I have to admit it. I know the 'noodle' story was hilarious in many respects and I've recently reread it and found myself wanting to laugh and cry. That morning is so vivid in my memory. I'll be sure to document and other doozie stories like that one but suffice it to say that steroid days are mentally exhausting. Aria is on and off, hot and cold, sweet and sour, loving and hateful, gentle and fierce, joyful and sad and so forth at any given moment for several days in a row. I know this. She is transparent most of the time and I am equal to the task but I have to tell you, it sucks the life blood out of me. Steroid days test my patience to the max and I despair when I falter. I pop the wind from my sails when I'm careless in my thoughts and reactions to her. It isn't a matter of the saying, "Well you're just human," nor is it a matter of being 'just of those days." Steroid days are entirely unique and separate from everything else and so when I fall short, I'm frustrated that I didn't meet the challenge well. I'm frustrated that I allowed the opportunity to slip by. I'm irritated that I allowed myself to neglect the moment.

However, in this moment, as I'm writing, I look to these next 19 months or so as opportunities to try again and this blows hope back into my spirit that I will exercise greater compassion. I will be more patient and understanding. I will be more present and hopefully more at peace. Can one be grateful for such an opportunity? I suppose in some ways I am and this is nothing but another perverted perspective I've gained through this experience. I'd do just about anything to not have to experience this with Aria and have these 'opportunities' but that isn't reality so here I am processing and writing to you feeling grateful for even this opportunity. It's so odd. I feel like I'm being lightly blown around on the breath of my own sigh. It is relief I feel and it is also a gearing up sensation. The image that comes to mind is a dandelion seed dancing on airy swells until finally being laid to rest upon the earth somewhere creating a tenacious root that thrusts deeply into the soil. I, too, am floating around having my light moments followed by other moments that are grounding and onerous. This is life for me and I tell you truly, it is still good. ~j