Sunday, May 24, 2009

Our first Outpatient Clinic appointment

There was no time for us to settle in to being home before we had to turn around and head back to the clinic. This was comforting as odd as that may sound. I was still reeling and trying to digest the whopping reality that cancer was going to pervade every nook and cranny of our lives. The whole outpatient experience was haunting me and I wanted to get it over with as soon as possible. I didn’t want to be afraid and I knew that the only way I could achieve that was to buckle up and face it. I wouldn’t be honest if I didn’t admit that a great deal of fear was knowing that I was about to meet and see families just like us and God I didn’t want to accept that reality. I didn’t want to be ‘one of those’ people! I couldn’t imagine Aria losing her beautiful hair and suddenly becoming a poster child for chemotherapy and cancer. I know that sounds horribly vain and don’t think for a minute that I in my admission I didn’t spend hours crumpled in a heap of filthy shame about it. I didn’t know anything about what we were to encounter. I knew baldness and chemotherapy went hand-in-hand and I knew it was bad. I just didn’t know how bad. I didn’t want appointments and follow-up to define our lives. I didn’t want to incessantly talk about cancer and I knew that I would. I didn’t want this and yet I had to accept it, otherwise I knew I would lose myself by constantly battling ‘I don’t want this’ versus “this just is.”

I also knew, in some vague way, that I’d have to muster all the strength I had within me to deal with other people. People exactly like how I was just 10 days before; people terrified out of their gourds about cancer. People wanting to know every detail but not wanting to know at the same time. People wanting to help, but not having the faintest idea how to be helpful. People, who in their fear, would eventually stop calling, stop writing, stop asking and fade into the backgroud resuming their lives as usual. I dreaded this.

It is critical to say that there is absolutely nothing wrong with how people react to this kind of tragedy when it remains so completely outside of their own truth. People very simply don’t know what they don’t know. I would have been exactly like these people I describe. I would not know what to say. I would want to say all the right things and do the right things and in my effort hopelessly fail. I would be constantly terrified and I wouldn’t know how to be present. I would withdraw and resume my life, not because I don’t care deeply but because my fear would have been greater. I knew then I was projecting this reality about myself onto unsuspecting ‘others’ but I didn’t think I was too far off the mark. I’ll mention that some were exactly as I described, but many, many more showed me courage, devotion and love that was beyond anything I could have imagined. People, in general, have taught me and shown me just how inside-out I could be filled with cowardice, vanity and insecurity, while simultaneously showing me how to turn myself right side out and become the person I was meant to be.

It is worth saying that the other thing that was beginning to creep into my psyche was the sense of reflection. Up until this time I was so busy processing new information coupled with new things to do like schedule appointments, check her temperature, monitor her bowels, look over her skin and the like that I didn’t allow much time for questioning and wonderment over the purpose of it all. I had 2 other kids to manage, a farm and a household. I had plenty to do that occupied my every waking thought. However, I knew that an existential awakening was awaiting me and it scared me. I didn’t want to have to think about it. I didn’t want to have to face the philosophical turmoil of life and death. I didn’t want to examine under the magnifying glass of my mind’s eye the purpose of my life that was beginning to unfold without my permission. I could see it almost like a sign reading, “Your Purpose” nailed to a post off in the distance. I knew I’d have to travel there and it seemed really far away and the terrain was like nothing I had ever known. I was unprepared and tempted to subscribe to ‘being busy’ as opposed to doing what I knew I must which was ‘to be still.’

January 25, 2008
Subject: I LOVE YOU

Goddesses, I LOVE YOU!! This is a VERY big day. Our first outpatient clinic day with a procedure. I'm stressed. Aria is wandering around whining saying, "I hate it.", regarding taking her meds. Sigh. This is tough stuff. So there’s a lot going on. However, I have to tell you that Rebekka's gift came in the mail. I am without words to describe it! I've looked at every single piece and picture; not a quick glance but also not a "hold each one, take several minutes to absorb all the detail". That will happen here in the next few days. For now, I've handled each picture, feeling a little light-headed because each one has blown my mind and taken my breath away. It is a work of art...a treasure that I will cherish for all time. It will be something that in 50 years when I'm well into my 90's, all the pictures will be faded but they will be engraved in my mind...perhaps it will be the only thing I remember at that time...still, there it will be and it will be a place to seek and receive comfort and love.. THANK YOU!!! I have got to hit it into high gear and get ready to take Reo to school and Aria to clinic. Big day....stinky stressed.....breathe breathe breathe.......please keep us in the light!
I can't begin to tell you how lucky I am to have you. What I wouldn't do to share you with the world. Everyone would be so much happier!! ~queen

January 25, 2008
Subject: Procedure #1 done!

Aria tolerated the procedure (spinal tap with a chemo drug put in her spinal fluid) and a bone marrow biopsy very well. The procedure itself went really fast..less than 45 minutes. She went under really easily and recovered exceptionally fast. This mild sedation business is SOOO much better than the general you get with a big surgery. Amazing. The day itself was hectic but ok. It was high energy but manageable. I dropped Reo off at school, came home and picked up Aria and Doc and we all headed to the hospital. We arrived a little after 9am, which was great. They took her vitals and got her prepped to "access" her, which meant putting in her port plug. It went really well. She didn't feel a thing, but still cried out of the newness and fear would be my guess. She was incredibly brave. She was also VERY hungry and kept whining that she was just starving! Poor thing, she just wanted scrambled eggs. Her procedure wasn't scheduled until 12 30 so we had a long, long wait. It all went pretty fast though and the fact that I had to leave a little after 10 am to go pick up Reo helped a great deal. It was a nice change of scenery. I won't always be able to do that but it was good today. Doc is planning to be at as many procedures as possible, which is so HUGE! So Reo, Rianna and I came back to the clinic around 11 30. We still had an hour to kill. S.T.A.R.V.I.N.G!!! The other hard thing was that Aria was so fussy and hungry she was fading, just needing to be held, carried and so forth. I felt so bad for her, but then it was her time and they took her back and before I knew it she was back. She was allowed to eat and boy did she ever! She ate a bagel with cream cheese, an orange and some oreo cookies! Then she had her chemo treatment and we went home where I promptly cooked up 3 eggs, which she inhaled with some sour cream! VERY happy little girl! The effects of the chemo are starting to hit her now. Her disposition is changing a little. She’s fussy, and a little achey. She also complains of a little sour tummy. That part is so hard because you know when you get so hungry you almost feel sick to your stomach? It’s hard to know if you feel sick or if you'd feel better if you ate something. That's her problem now. We're learning. She ate more eggs a little while ago and we'll watch her.

Her labs came back great today. She didn't need a blood transfusion for the procedure and we'll just be watching that every single time. She's strong and in good shape and we feel really encouraged about that. Things could change in a matter of hours, so it is a scary limbo we’re in now. So far, we only have to go back to the clinic next Friday and we're hoping that will be a chemo appointment only. I met a mother today with a 6 year old daughter who also has A.L.L. They are fast approaching the maintenance phase. Her daughter was hospitalized for the first month and in and out of the hospital pretty much constantly. This sounds dreadful and I have to gear up to deal with that. But here she is on the other end doing really, really well. Amazing...truly amazing!!

Rianna is sound asleep in my arms. I'm going to go lay her down. Reo and Aria are upstairs watching a Scooby-Doo movie. I have got to fold some laundry and do some general picking up. Since we've been home from the hospital, I feel like there's crap just everywhere. It’s making me nuts!
LOVE YOU so much!!

After this procedure day, my senses were inundated with a reality I knew was mine and I hated it and revered it. All those patients and their families….they were a part of me now. I slowly began to understand what that meant. Their stories were my stories. We were being woven into their lives and they into ours on a loom with infinite thread spanning the spectrum of color.

The moment we got home, I knew I wasn’t going to be able to resume life as usual. I wasn’t going to be able to ignore the questions, the pondering and wonderment of what we’d been dealt. I knew we’d never go back to a ‘normal’ life. It was like I had blinked and suddenly everything before me had changed and I’d never be the same again. It was then that I began to embrace being still, being silent and allowing my voice to finally be heard.

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