A day in the life...

Several days had passed since I wrote this particular email describing what it is like to live with someone facing cancer in full battle mode. The strangeness of trying to assimilate both the brutality and the delicacy of this particular moment to moment existence is a real challenge to describe. I've come to realize now more than a year later that it is nothing more than the never-ending human struggle to live in a place of balance. My friend sent me a couple of wonderful images of a woman/goddess holding a scale. One was in reference to justice, which superficially wasn't applicable at all but the image itself was brilliant. The other was of a warrior goddess seeking the balance of battle. Both were exceedingly helpful in reminding me that indeed the purpose of any moment is to find the experience of balance. That, which is always both good and bad in any moment. What follows here is simply a description of one of those moments.



April 12, 2008
Subject: a day in the life….

We’ve had a decent week, I tell myself, in spite of the ups and downs we are trying to integrate as some kind of ‘normal”. Aria’s 3 day respite from vomiting ended earlier in the week, which was completely disheartening, I’m afraid to say. Intellectually, I know that many cancer patients just ‘learn’ to get used to it, accepting that is comes with the territory. Frankly, I doubt it is something I will ever get used to. Emotionally, it flips me upside down every single time. Aria’s vomiting is always sudden and shocking. She is never casual when it is about to happen as one might expect when prepared to encounter a familiar experience. She is always in a state of panic, which is completely unnerving. It is also worth mentioning that she is miserable for a good long while before she actually throws-up, which forces me to examine every trick in the book in order to comfort her. My heart is punctured and deflated each time I witness her body writhe in discomfort and hear her heaving while she spews the contents of her stomach. Shortly afterward, when she’s done, my heart fills with relief and a peculiar companion to joy that celebrates her improved physical well-being and her desire to resume her normal activities.

Let me tell you, there is nothing ‘normal’ about feeling so gross that you have to puke almost every single day. Of course, we have been in close contact with her doctor to try and figure out what’s going on and we believe that for the last few weeks several things have collided to create this situation. We’ve had a cold that’s been circulating in the family now for the second time, which has presented as a productive cough that triggers her gag reflex. She takes a daily chemo drug that is the real culprit and we have decided to try giving it to her in the morning instead of the evening. We are also playing with the timing of an anti-nausea drug that she takes morning and night. Why this is such a big deal, beyond the obvious discomfort, is that she will continue taking this drug for the next 2 years! It is an enormous emotional drain knowing how crummy she feels most of the time and may likely feel for such an extended period of time. It is an every day reminder of just how sick she remains despite how well she is doing. The contrast of these realities that are paired and ever present is a relentless foe. Truly, it is not a matter of ‘getting used to” it is a matter of managing and overcoming somehow.

I want to try to describe the emotional ride I experience every day that she vomits because it is so utterly unique. For the hour or so before she vomits, she is incredibly uncomfortable constantly meekly complaining that her tummy feels yucky. She’s not at all herself and becomes quiet, withdrawn and reserved. She has moments when she’s improved and I breathe deeply trying to reassure myself that the threat has passed. Often however, the threat returns and she spirals once again to a darker place. As I am watching this decline and listening to her woes, I know there is nothing I can do but prepare for what is bound to happen.

I picture myself like a nervous little sun-fish swimming in somewhat frantic circles in a lovely little pond. My pond has a beautifully decorated ceiling with green lily pads and pink flowers. The floor is a rich muddy wonder with small stones scattered around and there are leafy plants that wave and wiggle tickling my fancy as I swim. When Aria is in her pre-vomiting stage, I swim just a little bit faster and with a little less purpose and certainly less enjoyment.

Suddenly when the inevitable happens and I race in my human form to the bathroom with her in my arms, I notice that my heart is pounding and I’m somewhat breathless. At the same time, I’m trying to be soothing and comforting to her and be solid in my presence despite the fact that I feel somewhat fractured.

As my sun-fish self, I feel as if I have been forced to swim with such power and determination that I have hurled myself out of the water onto a nearby stone that seems the perfect platform for an “out-of-pond experience”. I am breathing quickly, with my one eye staring up at the vast unknown, trying to flip myself back into the comfort of my pond. I flip and flop and flip and flop and flippity-flop-flop-flap until finally I take a deep, deep breath. It’s all over and I’m back. I help Aria wipe her mouth, flush the toilet and follow her lead to whatever tickles her sun-fish fancy in the moments that follow.
~j