Last Friday Clinic for September 2008

Aria and her BELOVED Krista!


September 29, 2008
Subject: Last Friday Clinic for September

It is Sunday morning September 28, 2008. When I got up this morning the sun was beginning to rise. There was a light frost and a heavy veil of fog lingering suspended above the ground. The sun's rays breaking through the mist gave the air an ethereal essence and pinky glow. What a gorgeous way to begin the day. We're expecting some last ditch summer efforts on the part of the weather and the heat in particular so Doc is readying the pool for some final days of swimming this week. Should be a glorious send off until next year. We are so thankful for that silly pool. It brought us some much needed relief and joy all summer long.

Aria's Friday Clinic (September 24, 2008) was terrific. Reo was crushed that he wasn't able to go with us. I can count on one hand the number of times he hasn't joined us and this one hit him hard. I reminded him that it was "school picture" day and that seemed to perk him up quite a bit.

When we first arrived at clinic there were quite a few people in the waiting area, including several families I didn't recognize. Aria was cheerful and the environment had a light feel to it. For some reason, the time flew. I think it may have been due in part to the fact that I gave Rianna a long leash, which simply means that I allowed her to walk all over the place. We wandered the hallways a great deal and it was delightful watching her explore as only a toddler can do.

Aria was weighed and measured. Her weight and height have remained steady for months, which is reassuring. We played and mingled and snacked while we waited for her port to be accessed and blood to be drawn. Krista had taken the day off so she wasn't there to play the guitar for Aria. However, Aria's port was easily accessed with absolutely no complaint or fuss. Aria was adorable during the process. She was actually cheering for her blood. "Come on Blood! Come on out! Come on out!" I laughed and laughed. What an extraordinary person she is to have reached this level of acceptance. I never cease to be amazed.

While we were waiting for her lab results, the director of the Candlelighters came over to the clinic. The Candlelighter organization is a support/advocacy organization for families with children who have cancer. I've had little involvement with this group so far, with the exception of that incredible conversation I had with the director after the funeral of a little boy I attended in June. She is an exceptional woman and human being. I don't know her very well but the little I know is profound. She has dedicated her life to helping families cope with the ravages cancer brings to the lives of children, their parents, siblings, friends and extended family. She knows the experience deeply and beyond what many of us know, experience and understand. Her husband died of cancer. Her daughter died of cancer. Her son died of cancer. She has one surviving son. I don't know when all this happened. I do know that her children were young when they died and that her husband was diagnosed, went through treatment and died while one of her kids was going through treatment. This level of tragedy and trauma is so beyond my comprehension. I've met countless people who have said to me in one way or another, "All I need to do is think about her and I stop complaining immediately!" It is so true. I have often thought about her and what she's had to endure. How has she reconciled the experience? How has she accepted what happened? Has she accepted it? How does she find strength to get up every day? What is the purpose of her experience? How is it possible that one person has to suffer the loss of 3 innocent family members to variants of this disease? My questions are infinite and I've kept her very close as a sort of 'reality check.’

She is as angelic as you would imagine her to be. She is gentle, sweet and sincere. She's also grounded, tough and anchored in reality. In every one of my brief encounters with her, I've found her balanced and present. I have great admiration for her partly because of what she's gone through but more importantly because of how she appears to have risen above it. I was chatting with her sharing some of my most recent pontifications regarding 'trust' and 'anxiety.' She stood beside me attentive and sincere as I went on to explain my thoughts about how easy it is for me to trust this process because Aria is doing so well. Lately, I found myself wondering what thoughts consume parents when things aren't going so well. When their children aren't responding to medication, or when tumors aren't shrinking from radiation or when the cancer is found some other place in the body. I can't imagine how suspicious they might become wondering if the doctor is missing something or if the current cocktail of chemotherapy is the right one or if there might be another oncologist more knowledgeable about this particular cancer and so forth. I can't imagine that it would be easy for them to trust the process, to trust that what was happening was 'meant to be', to trust that the people trying to save the life they hold more precious than their own are leaving no stone unturned in their quest for remission and cure. "It makes perfect sense to me", I was telling her, "to imagine these parents saying things like, 'they don't know what they're doing. They don't know what's going on.' " It's like an unintentional pointing of the finger and sending out blame because the process is so out of their own sense of control. The fear must be overwhelming and the dread, God, I just can't imagine the dread that creeps in. How does one trust?

In Christian tradition, we are taught to Trust in God...to have faith....to believe. I understand that and frankly it sounds almost simple particularly when one isn't faced with the very thing that scares them beyond all reckoning. I can't imagine any parent out there who wouldn't trade places with their child in a heart-beat, who wouldn't face death themselves if they knew it would spare their child. So, when one's child is facing the threat of death, how does one trust? This is where the concept of trusting God becomes empty for me. It seems to me that a very natural response when things aren't going well and trust is being tested is to then become angry with God, to question God's motives and purpose, to begin to lose faith.

I wrote early on that I was surprised to realize that I hadn't prayed, bargained, begged, pleaded or even talked to God in the tradition in which I was raised. To this day, I still haven't. To this day, God has not been a part of this experience in terms of something He did as a means of testing my faith, my trust, my belief, my resilience, my sense of sacrifice, and my love. God is not an all powerful, separate entity that is earning my blame, my anger or my praise. This I find incredibly fascinating because it isn't at all that I don't believe in "God". I do. I just don't believe anymore, many of the fundamental teachings that I remember learning as a child. God is no longer an omnipotent Being entirely outside of the realm of myself. I don't like to use the word God because it conjures so many old teachings that are no longer applicable. I won't be able to explain it to you very well, I'm afraid. I suppose this is another process that I'm experiencing and have been for many years now and I find what I sense and know to be true difficult to articulate.

You see, God is very real to me and very present. I've come to realize that my faith and my trust in God resides entirely in you and in Life. People; intimate relations, acquaintances, strangers, the things they do and have done, the blessings in Life that have been created as a result, the connections that have been made, and most importantly, the almost unimaginable ways that people have shown and shared their Love, this, to me, is God.

Mother Theresa once said, "Race doesn't matter. Religion doesn't matter. Every man, woman, and child was created in the image of God to love and be loved and that's what we look at." I hear her voice say this to me almost every single day and it is something that gets me on my knees in humility and praise. I used to understand it but now because of Aria, I've experienced it and now I know it to be true. God is no longer for me the mystery to be unlocked at the time of death and the ever-after but rather God is the Mystery and Miracle of living this Life.

Now, to resume my conversation with the director of the Candlelighters. She listened intently to my thoughts about trust and commented that she sees this a lot in parents. It was a nice "ah-ha" moment for the both of us. Indeed, trust is so easy when things are good. I went on to tell her about another thing I was thinking about recently with respect to anxiety. I admitted to her that I found myself worrying that something was going to happen to Aria. I may have even mentioned this in an earlier email. This so clearly defines the sickness of anxiety. I worry about something happening to Aria, as if the reality of what's already happened and continues to happen is not enough to satisfy the hunger of my anxiety. Indeed, I have to wonder and worry about potential things and fictitious things. Clearly, the things that are worrisome in my reality, my waking moments, and my everyday are not good enough. This aspect of my anxiety is insatiable and requires some serious work and overhauling. She and I shared a hearty guffaw about this because I don't think I'm all that unique in this regard. I think all of us experience something similar and it was nice to recognize it and laugh.

Later that evening as I was going to bed, I was thinking about my conversation with her and suddenly I found myself feeling completely stupid. I began to berate myself the likes of which I hadn't experienced for some time. For whatever reason, I felt the need to unleash my Julia-monster and give myself a thorough thrashing.
"Julia! Just who the hell do you think you are?" it began in a loud and vicious tone. "There you were standing in front of a woman who lost not only her husband but 2 of her 3 children babbling about what you're learning and discovering about yourself. Do you really think she cares? Do you really think she hasn't figured all of that out already? Do you really think you were telling her something she had never heard before? Do you really think you are that unique? Give me a break! I bet she was standing there smiling at you thinking, "Lady! You don't know squat! What do you have to be worried about? Your kid is going to be cured! Your kid is going to be fine! Look around. You think you know suffering and worry?!" My Monster continued whipping me, "Why don't you just shut up! You are not offering anything new. You have no insight. You're just a ridiculous woman trying to seem in control. Would you please just stop!"

My heart was racing and my mind was reeling. I was wide awake wondering, "Man, what brought that on? How come I felt the need to beat myself up so much?" Then it hit me. The proverbial light bulb went off. 'click.' I asked myself, "Julia, you wonderful ridiculous woman, why do you make virtually everything about you? Why are you the center? Why don't you just step aside a moment here and think about what's really going on."

I began by replaying the beating I had just given myself. I started to think about the comment my mind made of this woman standing before me listening intently but probably full of bitterness and resentment along with feelings of exasperation and irritation. I realized that that comment was the catalyst for my self-doubt and insecurity and had nothing to do her but everything to do with me. I realized then that all I was trying to do was to make sure that in my sharing of thoughts and discoveries that I was holding her in a place of utmost respect. I doubted myself in that regard and so I attempted to reduce myself to nothing so I never make that mistake again but what's worse, in attempting to reduce myself, I reduced her to a place of being insincere and that couldn't be farther from the truth.

The moment I had that realization I was calm and felt peaceful. My monster was lying to me making suggestions about this woman that were so untrue and unfair to her. Maybe she's had those thoughts and feelings at some point in her life but that's the thing about her now. Through her journey she is in a place in life that is so elevated in goodness, acceptance and strength that she elevates us all. I can find no greater purpose than that. She has dedicated her life to elevating people, to lifting them from their despair, to alleviating their suffering. She does this by her presence.

I told my monster this and although it wasn't bludgeoned as I sort of hoped it would be, it was nevertheless wounded. I'm sure it will rear its ugly head at some other time in some other way but I'm certain the warrior wit I've come to trust will drive it back once again. These moments, the magical little moments that are challenging, and revealing have become such powerful tools of learning and, I hope, growth. These are the negative things about this experience that I'm realizing are nothing but priceless gems only waiting to be uncovered. We all have hardship to endure, terrible opposition to face, and negativity and some more than others, but I'm beginning to question if making comparisons at all is worthwhile and relevant. It is so easy to say that it isn't but why do we continue to do it? Right now, the only reason I can surmise is to make me feel bad about myself. I compare my situation with someone else's and maybe I view their experience as being so much worse. What I yield in this comparison is not only feeling bad for them, but feeling bad about myself and what little I really have to complain about, all the while, I still feel all kinds of negative emotions about my situation. I'm a hamster on a wheel when I engage in this exercise and sometimes I just can't help myself. I am learning, however, to get off the wheel.

Aria's lab work came back and we met with Dr. Trobaugh. Aria's ANC tanked to 580, which was somewhat of surprise but not really given that she was dealing with a cold. Some kind of pesky little virus had made itself known and her body actually did an amazing job fighting it off, but her counts took a plunge nonetheless. Dr. Trobaugh decided to cut back her medication to 75% dosing for 2 weeks and then have a count check at that time to determine if her counts were improving. If they exceed the upper limit of 1500 then we dial up her medication back to 100% dosing. My brother Matt mentioned "dialing up and down" the medication and I think that is such a perfect way to describe the process. These next several months will be about tweaking her meds looking for that magic number. Who knows if it really exists. Dr. Trobaugh thought Aria looked perfect. She charted her growth for me on a growth chart and Aria remains in the 50th percentile for both weight and height. She is growing just beautifully. Aria's range of motion in her ankles remains normal. All of her other lab results are great with no question marks. It was a wonderful visit. I miss seeing Dr. Trobaugh more regularly. She is a whopping dose of goodness for me in every way possible.

I'll mention an observation I had that was a little shocking. When we entered the exam room, I realized that it was the same room we were in on January 15th when Aria was first diagnosed. I don't think we'd been in that room since. I kept looking around asking myself, "Is this room? No, it can't be! That room was so much bigger. Is it?" Suddenly I couldn't help myself and I mentioned that we were in the same room. Mary, Dr. Trobaugh's nurse agreed and mentioned that Doc was sitting there holding Aria, while Reo was over there and I was pacing holding Rianna. I commented that the room now seemed so much brighter. As I look back, my memory has it that that room at the time felt much darker. Literally. I remember thinking that one of the florescent light tube fixtures must have been out since the room was dim. On this day, however, the room was crystal clear and bright. This is clearly the difference between being suspended in reality and actually feeling grounded in it.

Dr. Trobaugh was full of encouragement and positive report. You know how much that means to me. I believe her and I trust her and I want to say here and now that if ever things should turn around, I will believe and I will trust her. I'm learning that when things go awry, goodness can still be found albeit after much work and searching. I'm learning that even my mental flagellations present me with wonderful choices for self-discovery and truth no matter how painful the process may be. Aria has taught me and continues to teach me how to seek and experience bliss. I'm seeing with clarity every single day that Divinity surrounds me. I'm beginning to finally realize the depth of the following that gem. This is something I've held very dear for many years, "The fullness of joy is to behold God in everything." Julian of Norwich
~j