Wednesday, January 13, 2010

Aria's February 18 clinic and chemo

February 18, 2009
Subject: Aria’s February Clinic and chemo

Yesterday, February 17, 2009, we went to clinic for Aria's monthly vincristine chemotherapy and an exam with Dr. Trobaugh. As you know, we are still trying to adjust her medication so that her ANC is balanced between 500-1500. We increased her daily 6MP chemo to roughly 50% and kept her weekly methotrexate chemo at just under 50%. For some reason I still struggle with accepting the idea that although she's only receiving 50% of the full amount of chemo, she's getting enough. Intellectually and very superficially I understand it. I understand despite that I don't have a 3D working picture of how the body actually metabolizes drugs, how proteins are exchanged, how genes are altered and so forth. I can process that Aria's body only needs 1/2 the dosing to have the same effect as full dosing but for whatever reason, I'm still hanging on to some anxiety about it. For some reason, that piece of anxiety is still delicious to me and I need to sample it once in a while. I need to question, worry and fear that 'she isn't getting enough' of the drugs. 50% doesn't sound like enough. Giving her 1/2 the chemo because she's so sensitive makes me go to a place that murmurs, "Oh my God, we are not obliterating these cancers cells with full-on blast power because her body is so weak, errrr, I mean sensitive. I just know those cancer cells are lurking somewhere just waiting to find an opportunity to come back since we're not able to zap'em with full power! Why can't we just give her the full amount and then we'll know for sure that we're doing everything we can!"

Ok, that's the voice of my anxious mind. I've nicknamed it, "A-Rashy" because it is anti-rational. I get it. I know, but there it is nevertheless. I swear, my rational mind and my irrational mind are like conjoined twins. They simply work together, one arguing with the other, but both always present. My rational mind, who has a more developed relationship with my heart, steps in and reminds me to breathe, relax, "just think for a moment." So I do and I see clearly Aria's sensitivity acting as strength not weakness, as responsiveness not rejection. These words help and I am calm again back in a place of understanding. Why is it then, that I still crave reassurance? It is tempting to want to discover an answer to that question, but let me assure you that I've fully accepted that "I simply do." So, I ask for reassurance every time without embarrassment or shame, without any negative voice whatsoever.

The clinic appointment was fine and routine. Aria is accustomed to it. She has little concern about what she has to do. She goes to get weighed and measured almost without thinking about it. She goes into the room to have her temperature and blood pressure taken without any resistance. When she had her port accessed, she was sitting on Doc's lap while I was entertaining Rianna with puppets and Krista (Aria's beloved Child Life Specialist) was playing the guitar. Aria didn't flinch. She didn't whine. She didn't whimper in fear. She didn't cower trying to avoid the poke coming at her. She sat there boldly displaying her chest and her port button while the nurse sterilized it and prepared it and then 'pop' she was accessed and ready for a blood draw. This process still makes me whoozie and I still find myself occasionally shaking my head thinking, "Is this really happening?" The next thing I hear is Aria saying in a sing-song way, "Come on blood! Come on blood!" She was cheering her blood on so that it would draw quick and easy. I sat there with my mouth hanging open in complete awe of her. Her blood was not drawing nicely, and she was beginning to scold it when Krista stepped in and said, "Looks like it's time for you to start strumming the guitar!" So Aria raked her fingers over the strings while Krista playes different cords and sings. It was so lovely and gentle and sweet. It is a place of familiarity and confidence that I am grateful for because I can sense still so clearly nearby the place of disbelief, uncertainty, fear, and sorrow.

I suppose I would describe the place I now find myself as an expansive plateau that is both beautiful and sparse. It would be easy to wander this path becoming bored with scenery that doesn't change, traverse or meander. But I've learned that this plateau isn't designed for gazing upon the broader view. It is meant, rather, to look closely, to pause often, to listen deeply, to wonder, to take time and to notice.

After her blood draw was taken, we returned to the play area and played with Krista. Aria watched the television most of the time, while Rianna colored mostly on her fingers! At first there were several families milling around but within 10 minutes most of them left leaving one other mother and her nearly 3 year old daughter who also has ALL. I wrote about them a few emails back. They spent a good 6 weeks in the hospital when she was first diagnosed but now that she is an outpatient, she is doing very well. She is nearing the end of her second phase of treatment and although she appeared very pale, she was energetic and full of smiles. I was amazed because Aria at this time was just emerging from her steroid cocoon. She was not energetic. I was still carrying her everywhere. She was not playful. As I remember, Aria was withdrawn and sad. It was so difficult and we didn't know then that it would get worse. It was nice to see this little one feeling well and doing well. Her mother told me, "Mornings are hard. She can't sit up or walk on her own because she's so weak." I remember those days very clearly and I found myself silent.

What followed was a wonderful conversation. She wanted to know more about Aria and how she was doing. She said, "I keep hoping it will get better and it doesn't." I let that sink in a minute and noticed that she has beautiful blue eyes and a smile that conjures warmth and security. I stared at her face a while and thought about how often I heard people tell me, "Oh, it gets so much better!" I remember believing them but feeling dissatisfied somehow. My thirst for, "how is it better?" was never quenched. My hunger for, "is Aria ever going to feel really good again?" was never satiated. My desire for, "are we ever going to have a day where we almost forget she's sick?" was always neglected. Although I stared into this mother's eyes for the briefest of moments, I felt as if I had fallen deeply into a pool of memory that was her reality. I told her gently, "I doesn't get better. It gets different." Her smile faded slightly as I knew it would and I didn't spare her the truth. "Really?" she said softly. I told her, "For us, some things got a lot better but some things got worse." I gave her some examples. I told her that for about a month Aria didn't smile. She didn't have any joy and one day she did. One day she smiled and the next day she giggled. It was glorious and not short-lived. Slowly, she emerged and we saw our beloved daughter in full glory. This was a tremendous improvement but what came with it was daily vomiting, leg weakness and no desire to play. This beautiful gentle mother nodded and was trying to smile in a way that solicited her lips to battle tears that were about to declare mutiny. I understood this expression very well. I reminded her of how far she has already travelled. I told her the number of times people mentioned that maintenance was the goal. It was the place to be and things would be so much better. I told her that I wanted to know more. “What gets better? What does that look like exactly? Give me specifics. Give me something tangible.” She smiled brightly and said, "Exactly!" I told her, "One day in the next few months you will have this desire to spin on your spinning wheel. It will be almost mindless and automatic as if walking into the arms of an old friend. You'll sit there spinning with nothing particular on your mind and then you'll realize, "Wow! I have space in my mind for spinning wool!" You'll realize that thoughts of cancer no longer occupy every single bit of your mind."

She didn't say anything. She bit her lip a little smiling and nodding. I like her immensely. She has a bravery about her that I admire. She's genuine and vast and I feel a connection to her. We were then distracted with our children. She sat down with her daughter and played and I with mine coloring. We spoke of simple things and then the conversation turned and I can't remember how it happened but suddenly we were talking about the idea that "God doesn't give us more than we can handle." (Pardon me while I gag myself!) She groaned as we discussed this idea and laughed in exasperation and she said, "I'm sorry but nowhere in the Bible does it say that! No where!" She said it with such confidence and knowing that I believed her. We were about to take this idea into some form of discussion when a nurse came into the playroom looking for something but having overheard our conversation, she chimed in with, "Yeah, I was at church yesterday and our pastor was talking about how we need to rejoice in our valleys!" We erupted in laughter. This nurse has a son with a very rare condition where he is basically allergic to food. I can't begin to understand her journey and when I stop and think about the unknowns that she faces day in and day out, I wonder, "How does she find the strength to move?" She continued, "Uh-uh! There is no way I am rejoicing in my valley right now. No way! But I am learning a lot...." We were all rather thoughtful for a moment or two and decided that 'rejoice' was entirely the wrong word. We accept where we are. We learn from it. We reflect. We grow. We're grateful but we are not celebratory or delighted by these surroundings. We can find things in which to rejoice but the journey through the valley is dark, haunting, threatening, and down-right scary.

I think these ideas: "God doesn't give us more than we can handle" or "Rejoice in your hardship" are a lot like comfort food. They sound good. They taste good. They fulfill a craving and a hunger. They're even mildly nutritious but they are not sustaining. They are but a tiny morsel of truth presented on the platter of life. It is no wonder that I crave so much more. The mother and her daughter were called away for their appointment and thus ended our time together. But, not before I told her about Mary Jane Butters, her magazine and her website. A spinner in Spokane must get hooked up with MaryJanesFarm! She was thrilled and I hope it gave her a little light to gaze upon and warm her spirit.

Soon after it was Aria's turn. We met with Dr. Trobaugh who came into the exam room all smiles. We were completely relaxed and I dare say for the first time in 13 months I didn't feel anxious talking with her, dreading what she might have to say. I was basking in Aria's wellness and this gave me such jubilant calm. Aria was lying on the examination table impersonating a lion on the African plains. She was emitting a low menacing growl. Rianna quickly heard the call and threw herself on all fours on the floor. Like a lioness crouching low, she slowly crept toward Dr. Trobaugh, who didn't miss a beat and looked at me nervously saying, "I'm a little scared. What should I do?" I whispered, "Move very slowly." Dr. Trobaugh did and winking at me, she waited for Rianna's approach. Desperately trying to suppress our laughter, we watched Rianna creep up to Dr.Trobaugh, give a little roar and then a big claw swipe at her feet! I thought Dr. Trobaugh would fall off of her chair. We were in stitches until we realized we had awakened the large lion resting on the examination table, uh, I mean plains. It was then that Aria sat up, gave a ferocious roar and yawned showing us her very sharp teeth! We were in hysterics. It was so much fun. Aria was still a lion when Dr. Trobaugh approached her in an attempt to listen to her heart. She walked carefully toward Aria slowly taking her stethoscope from around her neck. Aria continued to growl at her. Dr. Trobaugh, embracing our madness, stayed in character looking to me for guidance. I reached into my shirt and pulled out a zebra saying, "Here! give him this to chomp on. It's a zebra!" Dr. Trobaugh took from my hand the imaginary zebra and went to throw it to the lion but hesitated. She said, "Is it a whole zebra or what?" "No! No!" I began, "It's a juicy hind quarter!" "Oh Good!" was her reply and she threw the zebra leg at the lion, who quickly began to consume it! The little lion meanwhile, not to be left out, looked to me for another zebra. Alas, she had to be satisfied, however, with a wildebeest!

Aria's heartbeat was excellent. Her appetite, clearly fabulous! Her skin looks divine. Her feet and range of motion are normal. Her ANC was 1590, which is still slightly higher than we want but we are not going to change anything right now and Dr. Trobaugh assured me that everything, absolutely everything looks great. We'll return to clinic in 2 weeks and check her ANC then. Hopefully it will fall slightly and then stabilize but then again, it will be what it is and we'll go from there.

We left clinic shortly after. Doc and I stood in front of the elevators sighing. We were relieved, so relieved that everything is going well. At the same time, clinic is an exhausting experience. We were there 2 1/2 hours, most of that waiting, watching, wondering, worrying, remembering....

I'm no longer in the darkness of the valley and I'm grateful but I carry elements of it within my spirit and I tell you, honestly, it is heavy. But as I sit typing, I can see myself clearly upon the plateau of this journey. My head is held high. I am confident and I am strong. I have a smile upon my face and I can feel warmth and sense a glow. I'm walking toward the light that was barely visible a year ago. I have travelled so far and learned so much that my fear is lessening with every step. I walk toward 'knowing' in all that I do, say, think, and feel that all is well. ~j

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