The trouble with epilogues

The link to our gofundme page can be found here: http://www.gofundme.com/teamallison
Thank you for the kind words, prayers, and well wishes, I love you all

The trouble with epilogues is that they imply that anything ever ends. We carry our experiences through life like glasses with colored lenses. They’re bent and battered from the hits we’ve taken. Every ending, every change tints a piece or so till they’re more like stained glass windows than glasses. We hook them over our noses and each heartbreak, every lesson we’ve learned colors what we see depending on the angle of the glance as we happen to pass upon the idea in question. We look out across the tangle of human lives and opposing desires and use our experiences, our endings to judge the best course of action. Old scars are like road maps; they remind us of older mistakes. We trace our fingers against them and they whisper warnings.  Nothing ever ends.

As March rolled around again this year it seemed as if I looked back across the past 12 months as an enormous expanse of time and change. I had lost my eye, lost my faith, lost my love and my marriage. I had taken back my life, quit my job, and moved back home with my family.

As 2014 came to a close I stood on the precipice of a new year and dangerously on the edge of loving myself. I lost all of the trappings of my adult life but my little red car and lived unsettled in the center of my own judgment. My discomfort stemmed from my contempt for my own circumstances. The wings of my ego beat against my walls of my reality: “how the mighty have fallen” it cawed. The trappings of my childhood room, my pre-adult life, fit as oddly and tightly as my unfortunate senior prom dress. I felt like a failure. I was afraid I had let down the expectations of anyone who had ever called me bright or promising, I struggled to reconcile my situation with dreams of where I could've been by then. 

But even as I struggled to patch a broken heart with shards of the dreams of my adult life I was gloriously in control of my moments. I found a dizzy, guilty new joy in saying “no” to things. I came to the conclusion that my time was valuable and finite and became more efficient at spending it on people and things that truly mattered to me. I sang in the car with the music turned up to a positively ignorant level and reveled in the irreverence of dancing to taylor swift with a seatbelt on and the windows down, stopped at a red light and invading the personal sound bubbles of my horrified neighbors. It was silly but also profound. I had never before experienced such joy with myself for company, such deep true happiness and satisfaction with the person I was in that moment.

 I wondered if it brought me greater pleasure to barrel through moments like this or if this heady peace was rather the lack of reservation I felt in doing so, an unapologetic cheerful malcontent like none I had ever known.

Armed with this new energy I had taken on the early winter with cautious optimism. I am by nature a rather pessimistic person prone towards excessive risk-analysis so while my brisk frolic forward was more stately than kittenish in nature, I felt I had at least maintained a perfunctory devil-may-care snap in my heel.

February had come and gone in a sort of not worth mentioning fashion and as this fell short of total disaster or wallowing in misery I was willing to chalk it up as a point to the good.

I had decided to take on a second job bartending on the side by March, which challenged my ability to find a work/life balance but also my sheer ability to put up with the mundane, the mediocre, and the infuriatingly halfway done air of the place. It had found itself at the crossroads of a fading, palely enthusiastic regular crowd, and a pricey menu. While the patrons seemed as bemused as the ownership in regards to its bland success it was a curiously prosperous environment. The steady nightly tips almost made up for the steady soul-sucking nature of the place and I had settled into a tiresome routine of putting up with life, my head down and nose rubbing against the grindstone as I prepared for summer.

I meant for summer this year to be a season aflame. I had meant to burst from the green cocoons of spring to gorgeous flower in summer as I unveiled a new more adult me. I would be helping my oldest friend to the alter, and I was going to take the trip of a lifetime to Italy. Sometime in mid February I had picked up the book “Eat Pray Love” and lost myself immediately in the luscious tangle of fate and destiny between its pages. The author’s search for love and color and beauty and food spoke to me on deep levels, resonated in some inner divine core like a bell at the perfect frequency. Europe was calling to me, I could feel the pull of the culture and the language like a huge descending bouquet of flowers and smells waiting to swallow me up in a personal rebirth; I wondered if I would ever come home. While I waited for my time in the sun I went about my daily responsibilities with ever-heavier shoulders, wiping my brow as I stashed the extra cash in a tampon box. I watched, satisfied as a little nest egg grew and all of the extra work seemed more worth it, made me stand a little taller.

I began to notice limitations. I got tired quicker and deeper. The exhaustion rooted deep in my bones and took up residence for days not merely evenings. My overall health seemed run down, long insipid bouts of nausea plagued me in the mornings and I ate always mindful of how I might pay for my choices in the morning or long after I had tried to go to bed.

I visited my doctors frequently but they found nothing wrong with me, I made jokes about my old age and tried to take more vitamins.  I had developed a late in the game affinity for running and found great pleasure outpacing my problems until a series of small injuries grounded me, tried to replace my running with regular yoga practice only to find that my soreness and stiffness followed me even onto my mat.

I had developed a deep side ache, a pulling stabbing sort of pain that flared when I inhaled like a side stitch I couldn’t lose and soon it had become so pronounced I couldn’t straighten my abdomen to lie flat without significant pain. My yearlong treatment anniversary came and went and I asked that they look into my side pain when I went in for my 1 year remission appointment. The ultrasound was predictably both vaguely terrifying and inconclusive. Ultrasounds I was told, show everything and nothing, but certainly cannot be trusted to tell us anything. This made me wonder why we had bothered but I submitted to some serious painkillers to make an MRI possible after my oncologist had discharged me with instructions to return to the ER if my condition didn’t improve.

So I lay in the ER bed and stared at the ceiling, curled up around my sore right side and wondered what it was this time. They didn’t keep me waiting long. A blessedly brusque ER doc looked me square in the eye and told me they’d found malignant lesions all over my liver. Too many to count. It made me think of Beecher’s “no woman cheese”, lined with burnt sugar and jerk spices.  The black veins snake all through the white cheese inseparable and permanent. I have been through enough tough encounters that I no longer question the outlandish observations that pop into my head in these moments. It is best to acknowledge them and allow them to pass. This teaches you acceptance.

The next few days passed in a slow smear of painkillers and dull fear. I couldn’t eat or drink for the drugs in my system, I developed an equal appreciation for the ergonomically designed green vomit cones and one or two particularly wonderful nurse-aids. It is a hallmark, I believe, of having known true illness to be equally attached to an inanimate object that helps one cling to their dignity and at the same time to the very people who see us completely naked of it at our most achingly vulnerable. 

As I waited in the hospital bed in hopes of a return to a solid diet (or any diet really) I saw a disconcertingly large sample population of Auburn General Hospital’s doctors. None of them had anything new to say to me and they were all smoothly, predictably, uninformed uninterested or uninvolved in what was happening to me. When I was finally released 5 days later it was without having completed any of the treatment goals, although I had managed to keep down a half of a smoothie for an all week high of 4 hours and counting. My oncologist, so underwhelming when I had come to him with my concerns at the remission appointment, had not bothered to make rounds to see me himself, I remained in the dark regarding my final diagnosis, chances, or treatment plan. I was checked out of the hospital with a hollow sort of fanfare that heralded really nothing and told to go see an interventional radiologist at UW med the following day for further instructions.

The surgeries pavilion at the University of Washington Medical center has an imposing view. The building is clothed in wall to wall windows overlooking Seattle’s most majestic pines and maples, a spectacular natural background that changes year round putting to shame the priceless murals, exhibitions, and artifacts that sit poised in the corner galleries of the halls themselves, inviting reflection on the mysteries of time and human creativity. It is meant to inspire confidence, the colors and textures of the place ooze tranquility with a shiny saline tang of new money around the edges. I appreciated the dignity of the place and the stillness. Here I could find things that were older than struggle, older than my heartbreak and pain. Here the trees could look over me like just another soul among the pinecones on the forest floor, another star in the sky, another whisper on the breeze. It helps me when I am lost to think of myself as these things.

 For the clean open spaces of the surgeries pavilion the waiting rooms are bright and too full of blond wood accents. The lights are sterile and the air feels harsh and I want some answers. My interventional radiologist is named Dr. Sheron Kwan. She is tiny with delicate features and her hands are birdlike. She looks very much like she would like to sit with me and tell me the truth. Something about the way she comes in tells me she wont be able to. They ask me to sit, awkwardly twisted on examination table, my sister and father in passenger chairs as she perches on a round swizzle stool. There is a nurse with her with ruddy hair and cheeks. She perches on the edge of the trash can and I wonder ludicrously why we are all in an examination room and not some sort of table. It feels like I’m about to get fired in my pajamas. I walk her through my story again, answer all the same questions, and she feels all the same spots.

 She tries to tell me I’m dying but she stops just short and she won’t look me in the eye.

She won’t tell me how much time I have left, she wants me to understand that its about giving me as much time as possible with the circumstances at hand but I am hearing her tell me the game is about stealing time back from wherever my life has gone.

She says the cancer has compromised around 50% of my liver and the primary risk is its spread to my other systems. Malignant melanoma like mine strikes fast and deadly when it chooses to spread.

She tells me that I understand that I have a very serious disease and I am trying to understand what her eyes are adding. I tell her I don’t understand what it means for me. I ask if she means months. I ask if she means years. She doesn’t have an answer.

She tells me I’m like nobody else. I’m rare. I think about steak cooked to 145 degrees. Nobody like me has this disease like me. She can’t tell me what will happen. But her eyes are telling me something different.

They tell me they’re starting chemotherapy on Tuesday. In seven days. She tells me they will put a tube in through my hip and run it into the main blood supply of the liver to best try to shut down the damage the cancer is doing in my liver. This sounds like doing a trench run in a souped up x wing fighter with darth vadar and a pair of tie fighters on my ass as I try to send a pair of proton torpedos down a tiny exaust shoot to destroy a deathstar. Pew pew! Just like shooting womp rats back home.

I want to ask more questions but I don’t know what they are. I want more clarity but she has no more to give. The ruddy nurse is misreading the situation and her cloying sickly conversational asides sicken me like bad tea with too much sweetner. I want to ask her to leave but I stay quiet instead, hating her.

Seven days seems fitting. It seems an appropriate measure of time to grieve and to plan and to implement and prepare. It seems like a final countdown, a slow montage to future prosperity or a solemn memorial to 25 years lived.  But instead the time drags. Painkillers don’t kill pain and killing time doesn’t make it pass faster. The drugs slick things down, formless blobs of thought and twinges and fears all squished into a stream that runs slow and slippery, just quick enough that you cant grab onto your fears with both hands, you feel them brush your fingers like fish as they pass, cold and clammy across your brow. When you clench your fists they squeeze out past you and slip away, returning to bump up against you in the night and leave puddles of cold regret to surprise your toes in the morning when you step out of bed full of purpose. 

I do my best to wrap up my lose ends. I fold my loved ones like papers and tie them in fading ribbons like goodbye embraces then tuck them into my soul to carry with me through the dark. I rage in silent impatience at anything that goes awry or amiss or takes too long. I feel the days surge forward and count my sunsets. I hold on with silent regret to moments I recognize as having passed forever and find moments of clarity in which I know unmistakably that I mean to leave something or someone behind. I let it go and acknowledge its passing. Perhaps it was no longer serving me.

I gather my strength. This battle is one against time and against odds. This is a fight that you do not win by strength alone. The greatest courage is to wake up in the morning and face the sun that rises without thought or concern for your struggle. Bravery is not learning from defeat but rather never looking up long enough to be beaten. Be it pain, be it blood, be it suffering, all things know an eventual end and if you can find this truth, curl up in the bow of this ship it will carry you through the roughest of waters to a place inside you where there is peace.

The trouble with epilogues is that they imply that anything ever ends…

To be continued.