Thursday, August 6, 2009

May 2008 Clinic visit

May 20, 2008
Subject: Friday Clinic

I thought you would like a detailed update about Aria's most recent Friday May 16, 2008 clinic experience. She began the 4th phase of treatment called "Delayed Intensification". It is the one we've been dreading because it is the "big gun" chemo and by far the worst since our first phase of Induction. There are several new medications involved that are more intense than anything she/we have experienced to date, so we are 'holding on.' It is a scheduled 8 week course if everything goes without a hitch and I've heard that 9 times out of 10 there is a bump in the road. The typical course is more like 10 to 12 weeks. We're keeping our fingers crossed but have learned to go with it.

Just as I wrote that I had this image of some white water rapids. I'm not a fan at all of white-water-adrenaline-rush-rafting. I'm much more the float quietly and gently in a nice inner-tube-pulling-a cooler-of-beer type but I do know that if ever I was to get swept up in some kind of rapid, the best chance of survival is to relax and allow my body to be taken by the river. I also understand this logic is stellar particularly if there are no rocks in the way! This reflects my general attitude, which is relaxed allowing the river of Life to take me where it wants. So far, I've been given no reason to resist but at the same time I realize this is almost purely an intellectual exercise.

Clinic days are always an incredible mixture of events and emotion. I never cease to be amazed. Aria was scheduled for check-in at 10 30am where she is weighed and measured. Her vitals are taken and her port is accessed so lab work can be drawn. After that, it is all about waiting until her 12:30 spinal tap procedure. Doc and Aria took off for clinic while I waited around the house until it was time to pick up Reo at 11:00 am. We met them at clinic about 40 minutes later. This has been our typical way of negotiating clinic mornings and so far has worked very well for us. By the time we arrived, Aria's lab work had just come back. Her hematocrit was the highest it had ever been at 29 and her ANC was way back up to 2800, which explains why she has felt so great and full of energy. It has been exceptional to see her be herself again. This is exactly what we wanted to happen before we began this phase, which will shoot her counts back down to a target of 500 - 750. It won't happen overnight, so we'll be able to enjoy her in a healthier state for a few more weeks.

While we played in the waiting area, Aria was subdued and a little anxious. She talked a lot about the food she was going to eat after her procedure (steak, soy beans and a coke). She told everyone within range that this is what she could look forward to and everyone was quite impressed and amused. It was adorable.

Rianna was very busy running here and there but is such a delight that it was fun. Reo found things to do that were amusing. They are so used to the environment now that I don't worry about them at all. There were 2 other little boys in the waiting area. One was playing with some kind of video game system. We are not at all savvy with those things yet, so I couldn't tell you what it was. There was also another little boy playing board games with one of the Child Life Specialists. I had seen him in the clinic once or twice but don't know anything about him. I'm guessing he is around 10 years old and for the first time I noticed that he had a large scar running from the middle of his head down to his neck. His hair was beginning to grow back and for some reason it caught my attention that his parents were nowhere around. I began to wonder about him.

Right around 12: 30, Doc and Aria took off to the procedure room to have her spinal tap. Within minutes of their departure, I noticed the little boy's father in the playroom wiping tears from his face, taking deep, deep breaths. It was very disturbing and suddenly all of my senses were heightened. Rianna took off running down the hall and as I went to chase her down, I saw the little boy's mother and father in a tight embrace, gently sobbing while their son stared off in the distance. It was bad news. It was crushing and I felt a weight around my heart for this family. "What happened?" I wondered silently.

Rianna and Reo went into the main playroom where the mother was pacing, rummaging through her purse to find her phone. As she was talking on the phone, she was doing everything she could to keep her voice steady. Her back was to us and she was looking out the window. I was suddenly incredibly aware of the fact that I was eavesdropping, making no move whatsoever to leave the room and give her some privacy. I felt glued to my seat and had to know what was happening to them. I felt this odd emotion that one may call ‘guilt’ but that’s not actually what it was. I can’t tell you exactly because I don’t know. It was such a mixture of emotions. On one hand, I wanted to be respectful of what was happening to them, knowing full well that it was none of business but at the same time, they were in a very public place facing something that could one day be something I have to face and I wanted to know. I needed to know. I found myself listening intently to the mutterings in my own head, "don't be afraid...don't be attention!"

Her voice broke and tears spilled and between sobs and gulps of air I heard her say, "the results are inclusive...we don't know what's up with his brain.....they're sending us to Seattle.....they don't think there's anything they can do....I need a favor....I need a pictures..good ones...have to be taken this has to be this weekend...will you do that for us?" I found my mind wandering thinking, “those tangible memories that can be held and touched and fingered...They are so precious.” I am so, so sad for this family and what they are having to face. I have not taken their fate as my own, however. We are not facing death right now. We continue to walk right through it despite its constant presence. Still, they have forced me to take a step back and stare down death once again. I feel I must examine that possibility and that reality so I can relinquish my fear of it and the illusion that I have any control over it. In its place, I have to be willing to embrace accepting its mystery and know that peace is there. I'm realizing that I can believe whatever I want and choose to believe those things I find comforting but the hardcore truth is that I don't know what death is all about and I'm discovering that I don't care.

My ambivalence is really as flippant as you may be reading it but it is also light-hearted and gentle. I don't know. I don't care and it doesn't really matter that I don't know and don't care. Death comes when it comes and will come for us all some day. That much I know. I also know that it is a natural thing happening all around me every single day. Its mystery is beyond my comprehension so my ambivalence is simply my way of letting go and allowing it to happen as it may. "Come what may....." there it is again. When I let go, when I relax, when I hold my arms out wide and say, "come what may", I am fearless. I am fully present and I trust the process without reservation. I have all kinds of spiritual and religious teachings in my head and few of them amount to anything truly meaningful. Right now, this exercise is purely intellectual because I am not challenged to understand this process emotionally yet and I am very grateful for that.

On one hand, I know there is nothing more devastating than the death of a loved one. I don't think it matters if a loved one dies having lived a full life or barely a life at all. Loss is loss and death leaves those behind in the wake of its mystery, vulnerable, yearning for answers. If leukemia should claim Aria's life, I know I would incur a wound that would never heal. I would have to search for reserves in the wild untouched places of my spirit and naturally, I hope I won't have to. This is a selfish perspective and one that illustrates I'm holding on to illusions but it is also very human for no one wants to experience the death of a loved one and yet, at some point in time, we all will. On the other hand, when I think of death itself, I have a sense of calm. The natural process of it all seems similar to the natural process of aging for example, which seems easy to accept and acknowledge. That is, once you step outside of American culture's ridiculous and dangerous obsession with youth and beauty.

It is worth saying that at this point in my life and my spiritual development, I have very few images of Heaven and sitting with God in everlasting paradise as I remember from Sunday school. That isn't to say that I don't think it might exist, I just don't see it nor do I feel it. I'm actually quite comfortable saying, "I don't know." That feels very fine to me for some reason. I don't have any sense of worry about what happens after death itself. Specifically, I don't have a single worry about what would happen to Aria if she died. Very simply stated, in my mind, she would succumb to an exceedingly natural phenomena and I would be left without her. That is the real concern. That is the struggle to my mind. When I go into that darkness and try to imagine her death it is about me not her and my ability to cope, which is what makes the process so selfish. I don't bother myself with questions of would I see her again in the afterlife. That strikes me as such a bizarre way of avoiding what I know in this present moment for something I don’t know at all. I don't want any distraction from seeing her now, enjoying and savoring every moment I have with her. I have learned to understand and embrace that every moment is a gift whether it is a moment that is full of goodness or one with negative consequences. Life is designed for us to be as fully and divinely human as we can and I am just beginning to understand how to take a hearty bite out of that idea. One of the elementary ways I teach this idea to the kids is to follow the religion of Santa Claus. "Be Good, for Goodness Sake!" It teaches them to be good in every moment not for a reward at some later date but for sake of goodness right now.

I don't see Aria dying and I’m trying not to have major insecurities about it but I am aware that others around me are having to face it. I feel compelled, therefore, to extinguish any temptation to deny that possibility and so I am keeping my examination of death a close companion these days. Like I said, it has been a powerful intellectual exercise and I'll be curious to discover what resonates and what doesn't. The vapor of death still swirls around the front door, but its oppressiveness has waned. I will carry the image of this little boy's family in my mind's eye for a long while.

Aria's spinal tap went well. She survived another anesthesia and there was relief once again. Aria woke up like she was being shot out of cannon. She sat straight up, rubbed her eyes, stretched, gave a wee yawn and began demanding her food! She was chitting and chatting like nobody's business and Doc and I found ourselves in a sort of slap-stick shpeel running in to each other to race to get her food. It was hilarious. Her spirits soared and we were thrilled. I wasn't able to have a really good Dr. Trobaugh fix, but Doc was able to have a nice conversation with her and get his head wrapped the new schedule of chemotherapy Aria must now endure. We waited for at least an hour after her spinal tap for the chemotherapy medicine to come up to the floor. It was 2 o'clock by this time and Aria had been in this clinic for 3 ½ hours already. Aria was given a huge dose of "don't fro-up" medicine before-hand since one of the new chemo drugs is supposed to make her very sick. Her medication was hooked up to her port and slowly dripped in over about 15 minutes. The new drug was red and that made Aria very nervous to see. She was visibly upset but found a way to resign herself to the process. The exam room where she was receiving her chemo was right across the hall from the main playroom. We kept the door open and ran back and forth chasing Rianna. At this time, there was another family in the playroom. A little girl, who was around 3 years old, her older brother and mom were waiting for her lab results. The mother asked if Aria had ALL and asked what part of treatment we were currently visiting. I told her that we had just start Delayed Intensification and were a little nervous about it. She nodded knowingly commenting that her daughter had just finished that phase and they were waiting for her counts to be high enough for her to start her Maintenance therapy and finally go home. "Finally, go home?" I asked. "How long have you been here?" I said noticing for the first time how completely worn out this mother appeared. She looked at me with the saddest eyes and holding back tears she said, "We live in Idaho and have been living at the Ronald McDonald house since April 1." I took a deep breath allowing her words to penetrate. They'd been living at the hospital for the last 6 weeks, which was most of her daughter's Delayed Intensification treatment. She was positively exhausted with everything about her manner screaming, "I'm wrung out!" I looked at her and said, "I hope today is your day! I hope you can go home! Enough is enough!" She nodded with pooling tears and said, "Delayed Intensification isn't so bad. They make it sound bad so you can prepare yourself, but really, she did fine. We couldn't go home because her counts got so low that she needed to be checked often." I thanked her for her encouragement. It meant a great deal to me. They were called to another treatment room and Aria was finished with her treatment so we were on our way. It was after 3 00. It was a long day.

We were gearing up for a restless night and a sour Saturday. We were all incredibly surprised and thankful that Aria slept through the night, had a marvelous appetite, waking up without debilitating leg pain and nausea. The weather was glorious and we spent the day outside playing. The kids played in the sand pile with the hose and had a blast. Mid morning Amy, our neighbor, came over and took all 3 kids to play at Tata's house. There, they jumped on the trampoline, ate candy and ice cream and played. A little while later in the afternoon we packed up and headed to Reo's T-Ball game. Aria was starting to crash and I was getting nervous. I thought she needed a nap and could use some down time. I suppose I was preparing myself for something. She rallied, though, and insisted that she wanted to go to the game. We had a ball! She refused to walk anywhere, which is very typical for her after treatment but her spirits were unwavering. It was a great day.

Sunday was very much a repeat of Saturday. The weather was beautiful and Amy came over again taking all 3 kids to play. She played with the kids for 4 hours! It was the longest break without the kids I had had in I can't remember when. I wandered the gardens, did some weeding, sat down and ate a sandwich I made for myself rather than eating the scraps from the kids like I normally do. It was wonderful and I felt restored. I touched each of our fruit trees noticing thousands of flowers and taking time to hear the buzz of the bumble bees as they danced from blossom to blossom. Life was everywhere and I was acutely aware of wanting and needing to be in tune with it. I sat under one of our largest trees I call 'grandfather black locust' and listened. It was the first time in months that I was able to silence myself well enough to hear Life around me. It was a very healing day.

Monday morning came quickly and Aria had another clinic appointment scheduled so that chemotherapy drugs injected into each thigh. I dropped Reo off to school and took Aria and Rianna straight away to clinic where we met Doc. I'm only just beginning to accept the realization that any clinic day is a 3 hour affair. It doesn't matter if it is for a simple finger poke or a full-on procedure. The minimum time requirement to be safe seems to be 3 hours at this point. Aria was incredible. I was able to place her 'magic cream' on each leg, which completely numbs the injection sight. We were taken to a private hospital room and Aria was told to pee in the potty hat, which is used for urine collection. There is nothing like being told to pee to make a 4 year old dry up on the spot! Poor thing, sat on the potty and cried, "I want to go home!! I want to go home!" This was a first and it was heart-wrenching. Doc talked about getting her something to drink and I tried to create an atmosphere that was calm and relaxed and 'homey.' I closed the door to the bathroom and turned on the television and within a minute I heard her exclaim, "I did it, Mama!! I went pee!" We were, of course, full of 'hoorays' and 'way-to-go's.' Her urine was checked to make sure she isn't spilling proteins before she received her shots. Then we waited and we waited and waited and waited. It was only about an hour of waiting, but it felt so much longer and it always does. I can't escape the desire to wonder, "What is taking so long? How much time does it take to order a drug and get it up here? Why can't they order it ahead time, since they know we're coming? Why can't it be ordered the moment we arrive and if it is, why does it take an hour?" I took a deep breath and tried to imagine myself in the pharmacy downstairs, an environment about which I know absolutely nothing. I imagined hundreds of orders needing to be filled pronto. I imagined all the staff working there. Who are they and what exactly do they do? I imagined them bustling around getting the orders together, checking them and checking them again and again. I imagined them saying while they patted themselves on the back, "Good hustle, we got this outta here in under an hour!" I burst out laughing! Of course! There is a maze to this entire process that involves hundreds of people and pages of documentation all of which takes time and careful attention. All of these people are directly linked to saving Aria's life. When I heard myself say that, I sat down and felt so grateful for every single one of those people I will never know or meet. They came to work this morning and contributed to my daughter's well-being. I know nothing of these people nor do I know anything of what they do but I was humbled to think of their contribution. "Take all the time you need,” I said as I sat with Aria waiting.

3 nurses came in with syringes and needles neatly carried out of sight. Krista was there ready to play the guitar. Suddenly, Aria was surrounded by 6 adults and she was overwhelmed and frightened. She cried, "I don't want to do this!! I want to go home!!" The nurses were talking among themselves readying what needed to be done. Doc was gently holding Aria down at the shoulders. Krista was playing the guitar. I was muttering something to the tune of "it's going to be ok Aria! You are amazing! You can do it!" One of the nurses was holding down her legs at her ankles while the other 2 quietly counted down and gave Aria the shots. Aria's eyes were wider than I've ever seen them and I think she was stunned when it was over and she hadn't felt a thing. Everyone was so positive and encouraging. Aria was composing herself and telling herself, "I was so brave!" sniffle, sniffle, "I was so brave!" "Hey Mom, can I have my dollar now?" she asked out of nowhere, which caught me off guard. She is such a little tart! I told her that she could have 2 dollars, which sent her right over the moon with delight! We had to hang out for an hour to make sure she didn't experience any kind of adverse reaction. So Doc left and went to pick up Reo, while Aria and I stayed in her room and talked. It was nice. It was quiet and I felt settled. I'm finding a groove in this process. I've fully accepted that this is our life right now and I'm eager to discover everything I can good or bad. It is an opportunity like no other for me to grow and learn. It isn't a school I would request but since I'm here, I want to be a full and present participant. This is what I think living to the fullest means. This is what I think the purpose of life is. This is living and as I've said, my purpose is to live true.

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