Friday, June 26, 2009

Aria's Consolidation Phase

I think very early on I realized that Aria’s leukemia would be a challenge on many levels, not the least of which was battling the cancer itself. I realize now that I was thrown into a hyper-drive of a self-discovery of sorts. I wasn’t going to be able to deny my feelings no matter how much I may have wanted to. This was intimidating because we aren’t taught well how to handle the dark side of ourselves. As a matter of fact we hear over and over about the importance of staying positive and as much as I believe that to be true, I was discovering that it is also a rather ineffective form of denial. I learned that the more honest I was about how I was feeling, the more hopeful I became, the more trusting and open too. This email is in some ways the beginning of that self-discovery.

Subject: Aria’s consolidation part 2
Date: March 2, 2008

As you know, Aria is in Phase 2 of her treatment plan. For the sake of review, there are 4 major treatment phases; Induction, Consolidation, Interim Maintenance, Delayed Intensification. These phases vary in terms of length depending upon a child’s particular risk factors and how well they are doing during a particular phase. Aria is considered standard risk so her treatment will follow this time line; Consolidation is 4 weeks, Interim Maintenance and Delayed Intensification are 8 weeks each. After the completion of these phases Aria will enter the longest treatment phase called Maintenance, which is ~12 months long. Reaching maintenance is by far what people are striving for and every time I meet a parent with a child with ALL it is what they talk about, “We finally made it to maintenance” or “We’re almost at maintenance” and so forth. Maintenance is still a host of medications most of which are given at home but monthly clinic visits versus weekly and procedures only once every 3 months instead of weekly in these early phases of treatment. People describe feeling more “normal” and I can see that already happening to us now.

Aria is back! She is feeling great and this past week has been wonderful watching her emergence from the steroid’s darkness. She has been playful and talkative. She is still weak but getting stronger each day. She wants more independence with all kinds of things she used to do and is laying claim to those things once again. Her spirit is bright and radiant. I’ve often imagined her like the rippling sparkle of the sun as it dances on water. You can see twinkling stars of the sun’s reflection jump with the movements of the water. This is exactly like Aria’s spirit. She dances. She twinkles. She glistens and glows. She is magnificent.
Aria’s clinic visit this past Friday February 29, 2008 was awesome! The clinic itself was quiet almost too quiet. There was an office just off the main waiting area that was dark since the woman occupying that space was off for the day. It was rather unsettling, sort of like being in the office on the weekend when no one is around. There were only a few families in the waiting area and for a long time, it felt like we had the entire place to ourselves. It was wonderful. There were 2 families there that we had met before. Both of the children being treated have ALL and both were nearing their maintenance phase of treatment. The obvious relief on their mothers’ faces and in what the mothers had to say was powerful. I kept thinking that the phase we’re in now and the one that follows represent the calm before the storm. Delayed Intensification is by far the worst phase of treatment and getting to the end of that is a major milestone. Both of the mothers I met looked worn down and a little rough around the edges, however there was calmness in their voices as well as gratitude and tremendous relief. Their children looked fantastic and were incredibly playful. It was wonderful energy to be around.

I noticed that I was full of very mixed emotions. On one hand, I was feeling very confident and comfortable. I was thrilled that Aria was feeling better and know that these next few weeks will see her feeling the best she has felt in a long, long time. I was filled with hope. “She’s doing so great! Her numbers are fantastic!” I kept hearing myself say. Then I would look at her cuddled in Doc’s arms, quiet, reserved, back in her cocoon and suddenly it was as if a ton of bricks fell upon my psyche delivering a whopping dose of reality. Aria is in a clearing that is light, airy and sunny but a dense dark forest awaits her. My mind and my heart spent the day savoring the meadow-like clearing and at the same time my mind and my heart would race to the forest’s edge and stare. It was incredible to observe my body when I was in those moments. I noticed that I was hunched a little as if I was peering into what I couldn’t see clearly, stretching my body in ways that would enable me to get a better look. It was dark and unclear. I would run back to the meadow, to the present and try to enjoy myself but the forest in the background was daunting, oppressive and ever present. I wasn’t able to fully enjoy the meadow and all of its wonders. I did finally stop racing back and forth but I never stopped looking over my shoulder at what is waiting for us. I had to finally tell myself, “We are not out of the woods but we are here in the light to gather strength.” I felt comforted by that.

I am completely certain that some of this energy was due to a conversation I had with another mother whose son is very sick. They have been dealing with his cancer for several years after an original prognosis that was even better than Aria’s. Now they find themselves being encouraged to “let him go.” “How does one do that?” I asked her. She shrugged and told me that they aren’t ready yet and that there is still an experimental chemotherapy that they are trying now. I understand her need to try everything possible to save her child. I know her doctors are being gentle with her trying to nudge her to face a horrifically inevitable outcome. But I also recognize her need to know that they did everything possible to save him. It was a powerful reminder that once again there are no guarantees, no promises. I know this is true for us all. Life can be taken from us at any moment for any reason but there is something very different when you face death as a known threat. As an adult I can make a decision to stop treatment when I’ve had enough but as the mother of a child going through treatment, I cannot imagine for the life of me stopping until every possible avenue for cure has been explored. I suspect this is the energy I was sensing from this woman. My heart ached so deeply for her and for me. The threat of death is there for us all but for this woman it is solidifying. For me, it remains a vaporous presence that for now seems a little less oppressive but is nevertheless still there.

Aria’s lab work was wonderful. Her blood was a nice red color! Her hematocrit remains steady; still super anemic but not in need of a blood transfusion. Her white blood cell counts are normal as are her platelets. Her ANC level was over 7000, which is the highest it has ever been, which tells us that she has all kinds of infection fighting power. Her cholesterol level is WAY down too, not so much that we can stop her medication but we are going from twice a day to once a day. Small smart healthy steps toward healing! Her overall counts (ANC) are expected to start dropping because of the chemo medication she takes at home. It is normal and should not reach the critical immuno-suppressed stage. She should stay in a healthy range for the next 10 weeks until we hit Delayed Intensification and everything will change. Her spinal tap procedure went off without a hitch. She has one more spinal tap next Friday and that will complete her procedures for this phase of treatment.

As I was in the recovery room with Aria and she was eating carrots and ranch as well as ‘red chips’ (nacho cheese flavored doritos) I was talking with Dr. Trobaugh about her numbers and her progress and so forth. My mind and heart were racing from the meadow to the woods again and I was desperate for some reassurance. I think I asked her at least twice if not more, “So, you’re happy with how well Aria is doing right?” I realize now as I write this, that the voice of my very tender and fragile psyche was making feeble attempts to say simultaneously, “Can’t you just tell me that everything is going to be ok?! Can’t you just say that this nightmare of sorts is going to end really-really-really-really soon? Can’t you? HUH? Can’t you please just tell me that?” It was a pleading voice and I as I reflect on that moment in the recovery room at Aria’s bedside, it is no accident that I was on my knees asking Dr. Trobaugh these questions with my real voice and with the silent one in my mind. Dr. Trobaugh is amazing. I have to remember to tell her that when she looks in my eyes and tells me with a smile, “ I am so happy with how well Aria is doing. She is doing GREAT!” it is so reassuring to me and fills me with just the amount of strength I need to face another week. Her honesty and her ability to sense me and know my needs are tremendous. She is one of those doctors that can truly relate to people. She can take this very complicated matter and make it make sense. It is a gift and I am so grateful for her.

I asked her about the psychology of this phase (consolidation) and interim maintenance. I told her that I felt a lot lighter and more hopeful but I was concerned that perhaps this was a honeymoon phase of sorts. I didn’t want to get my hopes up too high but at the same time I needed to know that it was still ok to feel hopeful. I was a little confused still needing more reassurance I suppose. I was thinking if I was feeling hopeful was I denying the potentially grave reality of the situation? I know it is important to remain positive and hopeful and not dwell on the negative and darkness but I kept thinking about that other mother and her son’s 90+% chance of survival from his cancer. I know that his cancer is very different than the one Aria is dealing with but I wanted Dr. Trobaugh to be able to look into some crystal ball and tell me that Aria’s future was secure. She was very good to remind me to be in this moment. “For now, Aria is doing great! You have every reason to relax a little and enjoy her feeling better. She just couldn’t be doing any better than she is right now!” I was comforted by her words although not fully settled. I suspect I’ll never be fully settled. I imagine my emotional heart and my practical mind will always be at odds given certain circumstances. This is life. For now, I am trying to keep most of me in the light of positive thinking while still keeping a steady foot in the shadows of reality.

It has been a glorious week and yet I have struggled a great deal. I’ve spent days peeling layers of myself, dissecting what’s been getting under my skin and trying to find the source of my fluctuating mood. I’ve been very introspective trying to get myself sorted, which makes me look at Aria and her need to go into her cocoon. We are very much the same in this regard. I’ve come to the conclusion that I was emotionally spent this past week. I had no reserves and no emotional stamina to exercise the patience needed to raise 3 small children, run a zoo-like farm, be a humble happy mate and friend as well as be a source of creative energy for my own spirit. It isn’t that I’m asking too much of myself, nor am I trying to be any kind of wonder- woman. I simply recognize that when I have a short fuse and I bark at my children instead of modeling respectful tones and language I know my spirit is soured and needs some tender attention. I spent the week grumbling and growling over the least little things because those little things seemed overwhelming, growing exponentially larger as the days went on. Little things like Rianna trying to climb on chairs again and again 100 times throughout the day just wore me down. Aria pouting instead of using her words to express herself made me crazy. Reo digging his heels in over not wanting to try some new kind of food was infuriating. The fact that I just wanted to vacuum a room without someone tripping over the cord or crying over some such thing, just made me want to rip my hair out! None of these things in isolation is difficult, nor are they very challenging when I am emotionally charged, but when I am not, these things become very hard and the days have a seamlessness that is exhausting in their tediousness. None of these things are anything but normal parenting/ mothering challenges and they are only slightly exacerbated by Aria’s illness in my opinion. This kind of emotional drainage happened more than once before she got sick and I’m certain will happen many more times through the course of her treatment. It is just what makes life, life, but that doesn’t make it any easier when you’re in the middle of it, dealing with it.

It is not a sustainable state of mind for me and I am committed to figuring it out as quickly as possible so that I can return to my preferred joyful state of being. Hence, the need for retreating to the cavern of my mind for some much needed quiet and care. It is very clear to me that I benefit greatly from this kind of reflection and self-analysis. Some may view it as being selfish but I view it as an exercise that better enables me to be fully and sincerely present to those who need me most. I often think about the beautiful teaching of Jesus when he said, “Love thy neighbor as thyself.” For many, many years I heard that lesson ring in my head but I realized about 10 years ago that the last part of the lesson “as thyself” was something that tended to fade into the background. What I remember learning from my Christian teachings was to somehow forget self and focus on others and yet, this is in direct contradiction to what I believe Jesus was trying to convey. It wasn’t until I found the teachings of Buddhist monks that I learned how to better apply that lesson. I was learning to consider myself first and tend to my needs with gentle respect and kindness. I learned to embrace myself with all of my wonders and misgivings. I learned that to know myself in truth made me better able to know others especially my children. This is something I constantly think about as I develop new relationships and have new demands and challenges to face.

One of the many things I’m learning through the experience of Aria’s leukemia is to understand myself with greater clarity and depth; to face those emotions of mine that are unkind when they are aroused. I think the better I understand my own triggers and when I’m maxed out emotionally, I will be better equipped to face life when it gets hard and I find myself tempted to be angry with others asking questions that have no answers. Questions like “Why me?” only begs another question in my opinion which is “Why not me?” Life is both easy and hard, good and bad, fluid and turbulent. It is the perfect balance of positive and negative. I am convinced that when life seems out of balance it is I that is on ‘tilt’ and only I can right myself. I suppose if I were really together spiritually, I could say that I pray with devotion or I meditate with serenity and calm. I’m hopelessly inept at both. I don’t pray as I was taught as a child and whenever I’ve tried to meditate in the traditional sense I either fall fast asleep or my mind wanders aimlessly. Instead, I find quiet moments in everyday life to think and consider all the things that nag at me as well as those things I find praiseworthy. It is a constant practice and right now a cherished method for mental release has been this writing.
I will end this lovely bit of meditative imagery with this; Rianna has just walked into the library with Doc’s underwear on her head. Reo is running around wearing a magician’s cape trying to save his kingdom from evil demons and Aria is coming downstairs wearing only her underwear and growling like a scary lion! Life is so good! Life is meant to be thoroughly enjoyed and we are meant to be truly, sincerely, hopelessly joyful. I am convinced of that and I fully devoted to its practice.

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