Back in time.....The nitty-gritty of Aria final chapter..

This email basically documents the end of Phase 1 called INDUCTION.

There are many, many opportunities to interact with all kinds of people. Not all of these interactions go very well. In the world of serious illness for example, people are stressed, information is lacking, and sleep deprivation sets in, among a host of other emotional deterrents. This state of mind and being isn’t conducive for healthy interactions and I’ve discovered that it is under these circumstances that I tend to fall prey to the desire of blaming others. It is taxing to be this broken and have to constantly examine my thoughts and reactions, but this is must. It is the only way to heal and to strengthen the soul and this is what will see you through anything.

I’ve been reading the words of mystics, and healers and gurus and religious leaders for years and years and I have been putting their words into practice on a somewhat small scale. This experience has accelerated that practice for me in many ways and I suppose in some perverted way, I’m grateful for it. I’ve read over and over how we cannot blame others for our reactions and emotions. I’ve read how we must look deeply and examine ourselves but I’ve not encountered the step-by-step insight on how to do that exactly. Everyone is different in terms of how they process so there is no formula to follow but the email I wrote I think shows one example of how that process can happen.

As I read it again I realize that what I had written was a complete interaction. Someone said something that rubbed me the wrong way. My emotional triggers were activated and I was consumed with negativity. I arrested that downward spiral almost immediately and began a thorough investigation and dissection of myself. In the end I came up with a marvelous solution, one that I had never shared with anyone before. However, it is one that does the trick every single time!



Subject: the nitty-gritty of Aria (final chapter)
Date: Mon, 18 Feb 2008

It is Monday Morning President’s Day February 18, 2008. It is a foggy frosty morning. There is a stillness in the air that I like very much. This kind of morning is not unique this time of year and I always find myself lighting candles, writing letters, drinking coffee and spending time with my thoughts. I’ve come to realize just recently that I spend a great deal of time in my head as I’m sure most of us do. I find myself carried away with my thoughts while I’m folding laundry, ironing, vacuuming, washing dishes and so forth. Sometimes I am very present to my particular task and this is due entirely to the teachings of Thich Nhat Hanh. He offers terrific lessons about being present to the moment. For instance, he suggests that when you are washing dishes, think of nothing but washing the dishes. It is peculiar exercise to stand next to a sink washing a cup and think only of that cup and the process cleaning it requires. I find myself thinking about
water and I become mindful about whether or not I’m wasting it. I think about the soap I use and become mindful of whether or not it is polluting. I think about the cup itself and try to be mindful of its origin and maker. He stresses that one must force their mind in a gentle way, of course, to stop thinking about what needs to be done next and then after that and after that and so on and so forth. Being
present to the moment is being called to exercise mindfulness and mindfulness is the key to peace. I believe this with every fiber of my being, which is why I spend so much time in my head. I’m discovering that my interactions with others give me the greatest opportunities for mindfulness and those interactions that ruffle my feathers are the ones with the most profound lessons. I’ve had all sorts of new interactions lately so I’ve had all sorts of new opportunities to dissect my reaction, my participation, and my responsibility in those conversations that created emotions in me that were difficult. I’m amazed at what I’m learning and these reminders of mindfulness have become extremely handy when dealing with people and managing my stress.

Friday February 15, 2008 was our last day of treatment in the first phase called “induction”. If all of her tests come back as they are expected to and there are no surprises then we head into phase 2 of treatment called “Consolidation”. We don’t know much about this phase, yet. We don’t have our treatment plans or any of the new medications and so forth. We will learn all of that on Friday February 22, 2008. We are awaiting her test results from the past 2 Fridays to determine what kind of treatment we’ll be getting which is based on her level of ‘risk.’ So far, she is a standard risk case and the path for treatment is well worn and well lit. I feel very confident in the direction we are headed.

Friday morning was challenging because Aria couldn’t eat since she was having her 5th spinal tap and 4th bone marrow biopsy. I took Reo to school and was able to update everyone there. I hadn’t been back in the school for a couple of weeks so it was nice to get in touch. When I arrived home, Doc was prepping Aria for her day. She was completely withdrawn and sad. There was no spark to her whatsoever. They took off for the hospital around 10 am and I puttered around making a picnic lunch and so forth. Shortly afterward, I picked up Reo and we went on a special mission. Reo got some money and wanted to buy a new movie, so we went to a bookstore and scored a special new movie for him and for Aria. I had talked to Aria on the phone and told her that I was going to buy her a new pony movie and she was thrilled. Her voice definitely had some life to it and that was music to my ears! Reo and I arrived at the clinic around noon. It was quiet in the playroom, which I was told had been a complete zoo about an hour earlier. Aria was in Doc’s arms with her head buried in his chest. She was a little restless and looked exactly like a droopy bassett hound. Poor thing seemed just miserable.

Her procedure was schedule at 12 45. One of the child life specialists we have fallen madly in love with came in and told me about what happened while Aria was being accessed. (that’s when her port is connected to the tubes where they draw blood and where she receives medication) She told me that as usual her blood draw was sluggish until Aria was allowed to strum her guitar and then the blood flowed nicely. Interestingly, the minute Aria stops strumming the guitar the blood stops flowing. It is a curious positional thing and it happens every single time. She also told me that when they drew Aria’s blood, the color of the blood was a cotton candy pink color and kind of frothy! OK, this is where I start feeling a little wozy! Pink blood and frothy? This isn’t sounding good at all and I’m starting to feel that ol’ beach towel stomach friend of mine happening all over again! I glanced immediately over at Doc, who did not look very reassuring. I didn’t get any, “yeah, weird but it happens when such and such happens etc..” Nope, I got shoulder shrugs and twitchy mouths and perplexed eye gazes. This was not good for my stomach! I was also starting to get a headache. Stress is such an incredible full body experience. My stomach was writhing, my head was aching, and the air seemed oddly un-breathable, as if trying to get air with a sheet over my head. I was thirsty but couldn’t stomach anything to drink and my heart was racing. Pink blood?! What is going on???

Aria’s blood work came back with mixed results. Her white blood cell count was normal, which is awesome. Her hematocrit was 21, which is still wickedly anemic but she’s still holding her own. Her lipids, however, were 100 times normal. That’s right 100 times normal. So this means that her body was so saturated with fat that it couldn’t absorb any more so it remained in her blood! This is definitely a side effect of the steroid, but her diet of noodles, bread and butter, junk food and rich yogurts definitely played a role also. I was in red alert listening to all of this. I was preparing myself for a hospital stay and so forth. I was just hyper-scared and yet Doc and her doctors were completely calm. I kept hearing myself say in my head, “Pink blood! HELLO??!” Aria was placed on a med to reduce the lipid count pronto and they fully expected there to be no problems whatsoever. That was that. I tell you, these doctors, this modern medicine...I am in awe. It is just amazing to me that these people have the brain capacity to understand and what they do. You know, I feel pretty darn good understanding what a hematocrit means, even though I can’t picture what a red blood cell actually looks like, nor can I wrap my head around the idea of millions and millions of them circulating around in my body and never mind me trying to fully comprehend what a liter of blood actually looks like. No thanks! A little tube of blood is about all my little fragile tummy can take these days and I’m pretty darn sure that I want to see it a dark reddish color not some pretend lipstick color!

I was sitting in the playroom feeling proud of myself, thinking of all that I had learned in just this past month. I superficially understand the lingo and how things are pieced together. Yeah, I was sitting pretty with myself, until..until Doc and one of the oncologists began consulting about what things actually mean and what the next week will look like for us. Suddenly I pictured myself sitting in a saddle on some sturdy horse surveying the situation feeling mighty fine but then out of nowhere I was underneath the horse, upside down, still in my saddle with my hair gently raking the ground with only my ridiculous pride for company. It was an awesome moment to turn my attention to Doc. He and this other physician were engaged in ‘med-speak’ and I was captivated considering all they know and aren’t even discussing. Their ability to speak on the molecular level about the body and know in 3D fashion how one thing connects to another and another and another is just beyond my comprehension. It was a humbling moment to listen to them converse and be able to pinpoint a word here and there that I understood and know with complete confidence just how much I don’t understand. The expertise these people have is truly beyond my wildest imagination and in that moment my respect for Doc and this oncologist rose exponentially. I was flooded with a sense of trust that I hope I have earned with my own children. That trust that no matter what, someone is looking after me and in this case, that someone is a medical team looking after one of my most cherished gifts!

Aria’s procedure was absolutely fine. She required a lot more anesthesia than normal, which according to Doc had everyone looking around at one another but she handled it fine. When Doc was describing even that scenario, I was in awe. I would have been sensing the question, the concern, the “what the hell is going on with all the extra anesthesia for this kid?” energy and I would have been sweating and panicky! I know I would have been breathing deeply to prevent myself from passing out. I feel light-headed just thinking about it! I am so glad that I am not a part of that scene yet. I just don’t have the stamina for it. Doc, on the other hand, does and it is so reassuring having him there! Aria senses this, I believe, which is why she seeks him for security. This is teamwork in action!

All was well and Aria was so thrilled to be done. We were in the lobby area scheduling appointments for the next 3 weeks when I asked one of the oncologists if we had a copy of her lab work yet for our records. She got it for me and made sure I understood everything. I was very aware of the time and attention she was giving me and I was so grateful for it. I mentioned that Aria’s white blood cell count was normal and so her ANC level out to be really high too. She calculated it for me and it was great! I was so happy! It meant that Aria had all kinds of infection fighting power going on. It was wonderful and I was thrilled until.....until the doctor looked at me smiling and said, “That number is going to go down....I’m just letting you know...This is great but it won’t last.” wwwrrrriiiiiiinnnng! There it is again! In that moment I was this fabulous beautiful inflated balloon whose air had just been let out. I could feel my face droop and now I was the bassett hound! I found myself speechless and completely dismayed by what she said. I remember forcing my face to smile but I know full well that my expression was some contorted smirky suggestion that something suddenly stinks! I was pissed and bummed. It felt like I had just run a race and reached the finish line only to be greeted with, “hey that was great but needs to be faster next time!” I was trying to celebrate the end of Phase 1 knowing that Aria had done really well. She was beginning to feel better, her counts were amazing and things were going along just fine. This doctor stopped me dead in my tracks and forced me to look ahead at the next phase and know that although things are good now, they’re gonna get worse. It was weird and I was angry.

I remember getting into the elevator thinking, “Man, how could she say that? Doesn’t she get how that might effect me?” The elevator stopped on our floor with a mild bump and at the same time so did my thoughts. I stopped them right then and there. I realized that all of my thoughts were about her. I was pointing a finger at her. I was making her responsible for my reaction. I didn’t know at the time how to process this interaction. I just knew something was askew and that something was me. I told myself that my anger is my own and a valuable teacher and I must spend time with it. I’ve been thinking about it ever since and it wasn’t until yesterday, Sunday, that I finally pieced it all together. I am a s-l-o-w processor!

First and foremost, I have come to fully accept that communication and interactions are not singular. I am a full participant and therefore I bring to the situation all of my strengths and limits. My emotions and triggers are my own and as much as I would like to discard them and place them upon someone else, I can’t. They are mine, so I, therefore, must take responsibility for them. I’ve learned that after I own my emotions and my triggers, the goal is to sit with them, know them, dissect them, understand them and most importantly know that they are the very things that define me. They are my teachers showing me what I can be proud of and what still needs some work.

The first thing I had to do to get myself sorted was to peel enough layers to get to the heart of the matter. The first question I had to ask with respect to this interaction was, “What did she say that bummed me out so badly?” I just had to examine those words, not the interaction itself, not how they made me feel but the words themselves. “That number is going to go down.” Truth. No harm there. “I’m just letting you know.” Information is good. No harm there. “This is great, but it won’t last.” Shit, truth again! Drat it! All she did was speak the truth. She did her job and gave me information and what she said was honest. The problem with this interaction was me! My reaction wasn’t about her truth, it was about my fragile psyche and my inability to accept her truth. It is not her job or her responsibility to strengthen my psyche. It is her job to give me information in a straightforward and honest way. She did this very well and I am grateful to her for not only that but for the opportunity to once again examine where I need more work.

I suppose in some ways this is an example of the blame game. I could have easily stayed mad, keeping the attention on her and what she said and ignored my reaction altogether. However, staying angry and irritated is not my comfort zone. I much prefer to be happy and calm, enjoying the delights of life. This takes some effort. So, I’ve learned a little trick that I’ve never told anyone before. I’ve learned that when I begin to point the finger at someone and I have negative feelings raging through my mind and heart, I have to quickly extinguish those feelings and lighten up some how. It would be easy and so motherly to say that if I find myself pointing a finger at another, I ought to first point that finger at myself. This is very true and ultimately it is exactly what I do but it is such a matronly thing to say that it just gags me! I needed to devise a way to capture that sentiment but somehow add a little humor to it so it doesn’t feel so heavy and serious. I’ve learned that when I find myself wanting to blame someone else for my feelings, particularly when they are negative, and I want to point a finger at them, I turn that around and I give myself ‘the finger!’ That’s right! I flip myself a hearty bird and I crack up! Giving someone “the finger” is by far the most ridiculous thing I think there is. I mean, think about it! It is an angry gesture expressed through a finger flipped up with a sour face. It is so absurd that there is nothing menacing about it whatsoever, so I have found that flipping myself off creates a light-hearted environment for me to begin my work. It doesn’t excuse the point, which is to keep the focus directed on myself, my ego, my psyche and so forth, but it enables me to bring it to a level that is a lot less threatening.

People are people. We simply cannot be all things to all people at all times. We know this, I think and yet we still expect it. You know, when people are really off and their behavior and words are truly vicious and evil it is so transparent that the only emotion that is elicited is the one that says, “run away!” or “call the police, this cat’s crazy!” In most other circumstances, I have found that my negative feelings have less to do with someone else and more to do with my immaturity!
So, there it is. Flip yourselves off, you’ll feel better!
~j