Wednesday, June 10, 2009

The nitty-gritty of Aria

My sister Sue asked me to write the nitty-gritty details of what Aria’s treatment was going to look like. I did that in a 6 part series outlining the 5 major phases of treatment: Induction, Consolidation, Interim Maintenance, Delayed Intensification, and Maintenance. It is vital to say that finishing a phase and stepping into the next is like nothing I have experienced before. There is an incredible sense of elation knowing that one major peak in the journey has been conquered but this, for me anyway, was accompanied with a tremendous sense of dread knowing that another phase, equally fearsome and daunting, needed to be faced head on and tackled.

The learning curve that happens is absolutely tremendous. To consider for a moment that only 4 weeks before I wrote this I essentially knew nothing about the world of oncology and at this point I was no expert but I certainly had a handle on the language. Information is powerful. Numbers were something I could understand and therefore they became essential to me, like a life raft in which I found myself gripping its sides. I understood numbers. I may not have understood exactly what they meant but a general idea of their meaning was infinitely better than not having any numbers at all. Because I understood a little, I felt empowered as a participant rather than a helpless victim. I’ve said numerous times that knowing is much better than not knowing even if ‘knowing’ means facing your worst nightmare.

Now knowing and information can also have a distressing side. One can know just enough to set off a series of panic whistles in one’s mind that would easily be silenced if one knew and understood just a little more. I say this, not because it isn’t already obvious but because it is a reminder of survival on a journey such as this to ask for clarification, to make sure everything is understood, to insist on having things repeated again and again and to throw over a cliff’s edge embarrassment, shame, and anxiety about wasting the doctor’s time. These have been rather challenging lessons for me but the humility I’ve learned to exercise in this regard has been exceptionally powerful. Everyone in Aria’s care wants to help. No one wants me to be worried, anxious or upset. No one. Everyone wants the best for Aria, my entire family and I. Period. We all experience situations in our lives that are incredibly difficult and it’s only well after the fact that we think of a list of questions that I we didn’t think to ask at the moment. Intensity and stress will do that and so often in those early days with Dr. Trobaugh I was waiting for another bomb to drop, or I was trying not to vomit or literally fall down that my mind was barely processing every word she was saying. But I learned to call back and get what I needed. I learned to preface conversations without apologizing saying things like, “I need reassurance. Please explain that part again.” Or “It didn’t occur to me at the time but I’ve begun to wonder about…” I’ve learned that they are more than willing to sit and talk and listen and make absolutely certain that everything happening to Aria is well understood.

People have said to me countless times that I’m courageous. I’ve said it to a number of people as well. But let me tell you, it doesn’t require much courage to face the reality of cancer. What requires a great deal of courage, however, is to face the emotional upheaval that comes with it, to face the insecurity of not understanding, to face issues of trust and confidence. These monuments to character building are rough and jagged, and require no particular skill but a great deal of honesty, integrity, courage, tenacity and humility. These are the tools for a journey through cancer and what’s fascinating is they are constantly evolving.

What follows here is an email I wrote basically explaining Aria’s first phase of treatment and what we’d been experiencing. I would encourage you to sit for a moment and ponder everything she had experienced in only 4 weeks. It is absolutely mind-boggling.

Subject: the nitty-gritty of Aria part 5
Date: February 19, 2008 10:49:38 AM PST

I’ve since written a great deal about the past few weeks since we’ve been home from the hospital so, this last piece is more of a summary of what Aria has faced in this first phase of treatment called “INDUCTION”.
Our appointment on Friday February 1, 2008 Aria had her 4th spinal tap and 3rd bone marrow biopsy. The result of that biopsy showed no leukemia cells, which placed her in the category of a ‘Rapid Early Responder”. We have since learned that there is one more lab test that needs to come back clear of leukemia cells before she can be definitively labeled an early responder. We won’t have those results for another week or so. Still, on day 15 of treatment, to have no measurable leukemia cells in the bone marrow is amazing!

On Friday, February 8, 2008, we had another outpatient appointment. It was day 22 of treatment and we didn’t have any procedures. It was such a nice break! She had her last chemo med of vincristine that day as well.

Tomorrow, Friday, February 15, 2008 is day 29 of treatment. She will have her 5th spinal tap and her 4th bone marrow biopsy. Chemo meds will be placed in her spinal fluid at this time, because, once again, leukemia cells are known to hide in the spinal fluid. It will be a long day. Reo doesn’t have school tomorrow so I’ve called ahead and asked for volunteers to come and play withhim. There is a playroom on the 4th floor of the hospital for ‘siblings only’ but Rianna is too young so a volunteer will take Reo. I’ve also asked a friend to deliver balloons to Reo tomorrow as well. It is a huge milestone day for us all. Reo has been so incredible and deserves some extra special attention.

As you know, Aria has been going through some intense changes over the past few weeks. I was told that the steroids would make her weak and that she may not want to walk. I was told that she would get “puffy.” You are all aware of the food cravings I’ve described that are just incredible. I was told that she would have an increase in appetite. I was told that her mood would change. All of this has been very true, but I think it is important to describe exactly what has been happening to Aria and what these changes actually are. I have said before that they have been gradual and subtle.

With respect to her being weak and what that looks like. I think it is important to say that Aria’s weakness has gone hand-in-hand with a sort of apathy. She just has no interest in doing anything. She will maybe once a day get herself to the bathroom but she wants help wiping and getting dressed and getting off the toilet. The one thing she has consistently wanted to do, however, is take her clothes off when she goes to the bathroom. “I’ll do it myself, Mama!” she will say every single time. It is basically the only independent thing she does. Her weakness is coupled with a general malaise. She doesn’t feel well and she doesn’t kid herself. She doesn’t have the energy to even pretend to want to play or color or look at books and pictures. She has no interest whatsoever. She has become increasingly unsteady on her feet. It isn’t like she walks and then crumbles to the floor mid-step. She also doesn’t complain of leg pain or any tingling or discomfort, which I’m told can happen. Instead, she just doesn’t feel like walking or moving. This has been a gradual loss for her. I can remember last week she had a day or two where she wanted to walk up the stairs herself but not anymore. The stairs are completely overwhelming to her now. There have been times when she’ll stand as I’m helping her to dress and her knees will just buckle. It is a distressing sensation that she doesn’t like in the least. So I think that loss of control for her is so unnerving that it is just safer to be carried. She doesn’t whine or whimper about moving and walking but she’s been very clear about her limits and we’ve been respectful of those limits also. I firmly believe it isn’t a matter of her being manipulative. She just has a sense about her, a resignation that speaks volumes and we’ve learned to listen to her cues. It has been so gradual that I think if it were manipulative we would have seen different behavior earlier on and we didn’t. She was completely independent until she just couldn’t manage anymore and the most amazing thing is when she voices her need for what independence she has left, which involves food choices, where she’d like to sit or lay and whether or not she wants to be left alone. We respect all of her decisions. Her leg weakness has been such an enormous change. We are carrying her everywhere now.

In terms of her being puffy. This has been the most dramatic change for me and it has happened in just the last week. Her face is completely round now. Her cheeks are so bloated that she can’t really open her mouth all the way anymore. Her belly is incredibly distended, so much so that her bellybutton pokes out! That is an incredible thing to see and it makes me feel sad. It is a physical manifestation of the medicines that are in her body because of a horrible illness. That reality physically hurts my heart sometimes. She just doesn’t look like herself anymore and it is yet another daily physical reminder of how sick she is. I find myself in conflict over what my intellect tells me is temporary, and drug related but what my emotions scream is a wonder and worry “Will she be like she was before?” It is just the most incredible thing to spend an entire day with a child who just a month ago was playful, joyful and silly and who is now so tired, so worn out, so wasted that life has no pleasure. Yet, the hope that she continually shows us pops up out of the blue to remind us to stay strong. Aria gives us glimpses of herself every single day. We are reminded that she’s still in there. I even asked her this evening, “Aria, are you ok?” she nodded, “yes”. I then asked, “Aria, are you in there?” She turned her head to me and looked me in the eye and nodded “yes”. Aria is in this body-snatcher waiting to emerge once again. I keep imagining the butterfly of Aria waiting to emerge and when I think of it that way, I smile.

Her appetite! OH MY GOD!! Yesterday, she ate an entire loaf of entire loaf of homemade peasant type fabulous bread with butter slathered on a mile high. She was in hog heaven! Here’s the deal. As you know, Aria was stuck on noodles and she still eats them every single day at least once! Then she kept craving McDonald’s, which she got more than once and certainly more than she’s eaten in an entire year! It was so gross! Then, just this week completely out of the blue, she said to me, “Hey Mama, you remember that time we went to that one ‘resta-haunt’ where they had that really yummy bread with that white creamy stuff and pizza?” I had no idea what she was talking about. “think, Mama, think!” I asked her, “Aria, do mean Luna’s?” She was so excited and said, “Yeah, Mama, Luna’s! Can we go there??!!”

Folks, you have to understand something about Luna’s. It is one of the swankiest restaurants in Spokane. I have taken the kids there several times over the last few years because the food is amazing and Mama needs a treat once in a while. I’m also a firm believer that if you want your kids to understand restaurant etiquette, then they ought to go to restaurants on occasion that demand a certain type of behavior. The kids always do very well. When I really stop and think about it, yes, the food is more expensive but it is also mostly organic and locally grown food, which is something we support. So, the bottom line, you pay a little more for far healthier food. I was so happy that she was weaning herself off the junk food and allowing herself something a little more wholesome and healthy.

We are convinced that all of the things she’s been experiencing are due to the steroid she’s been on. We’ve also been told that once this drug is out of her body even in the next few days, we ought to start seeing a “different” Aria. We will see more of the little girl we once knew. I really hope so and will try not to hover over her too much watching and waiting. I’m excited for her to start feeling even a little better. I’m ready to start seeing her smile again. I’m ready to start have her be engaged in things she once enjoyed. This has been such a rough thing to witness and we’ve been told that she is handling it really, really well. I can’t imagine what some parents go through when their kids are incredibly agitated and irritable. That must be so hard and wear them down so much in such a different way than what we’ve experienced. In either instance, the hope is that this is something temporary and that thought is such a relief.

This coupled with the fact that the first phase of treatment is almost over. It is a huge milestone, such a big deal and something everyone in the oncology world celebrates with a sigh of both relief and begrudging acceptance of what still lies ahead. In my mind, I have been seeing this part of treatment as a very mountainous environment, which I appreciate is not very clever at all.

This past fall I read an incredible series of books about pioneer women, describing their lives traveling from the east coast to the west and what life was like on a wagon train. The strength of these people and of these women is almost unbelievable. I was particularly awestruck to think about the mountain ranges they traversed in wagons and tried to imagine myself in their situation. It was a useless exercise because for the life of me, I couldn’t picture it. Not for a second could I even sense what they were feeling when faced with mountains in their rickety wagons with all of their possessions and their families. I was reading their diary entries and was completely inspired. It is no accident that I’m seeing this experience as my own kind of mountain. The landscape is lovely, breathtaking really. It is strange too because the mountains I see aren’t before me as if they are a thing to be climbed and conquered. Instead, I am already on the mountain and I’m climbing and I’ve been climbing and it’s been challenging and revealing but manageable. All the while, I’ve had a view of meadows, giving me breathing room. I’ve been able to see clear blue sky, which keeps me looking up. The trees have been very interesting because they are a mix of my own experiences. Some of the trees I see are from the woods where I grew up and spent countless hours playing. Sometimes they are the trees of western Washington where I hiked and became more sensitive to the environment and how all things are connected. Sometimes my view reminds me of a friend’s farm in Pennsylvania I visited only one time but its beauty made a lasting impression. I have the sun’s rays always in view, which is my light at the end of this journey that I’m certain will become more and more magnificent. I recognize that this is all rather cheesy, but I’ve discovered that when I create visualizations of imagery that give me pause, humility, beauty, awe, wonder and peace, I am so much calmer and confident in my step.

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