finding out

Why did I choose that one day to go to work, instead of downloading the posts like I did every other day? I’ve wondered before, when that one person leaves the house in the morning, like they do every day, like they have every day for the past 3000 odd days, is there something different that day that they feel before their car goes out of control for that split second on the road, before they feel that tightening in their chest before it seizes and stops beating, before some random act of senseless violence touches and takes their life? Or is it just another ordinary day in their life until it becomes the last moment in their life.

I sprained my ankle pretty badly, thinking originally I might have broken it. X-rays showed the possibility of a slight fracture, but nothing very serious. they gave me an air splint and told me to stay off it for a week, which I largely didn't do. It wrecked my day and a couple after that, but it was just a couple days of pain, didn’t even keep me off work really. A few days later I got a call from the radiology doctor who reviews all the x-rays and said that he was concerned about some fomentation in the bone. they asked me to come back in for a bone scan and some blood work.

I guess I never thought much of it. I never saw the train heading my direction. Never put two and two together. Hindsight what bliss. I had been training for a 10K race in the spring, I chalked it all up to too much excersize and too much competitive desire to beat Matt who would be running with me. I assumed the blood work was just standard procedure with this sort of check up type thing.

How did a simple x-ray for a sprain turn into a bone scan, turn into blood work, turn into an MRI, turn into a biopsy? I’m not sure how it is my life started to unravel so quickly after that. Seems SO long ago now. I had no idea what blood cancer was, and I didn’t want to know. I spent a lot of time looking up Leukemia on the internet. then i spent time trying to avoid anything with that word in it.

chemotherapy was something other people had when they were sick. They got to middle age, had children, a job, a crisis or two, an addiction and a hobby. Then when they were safely well into their 50’s or maybe into their 60’s they developed cancer. Kind of a mysterious all encompassing word that to me, up until this time simply meant… sick. People my age have car accidents, a pregnancy, trouble kicking cigarettes, they pass out drunk and attend anger management classes, not cancer. ... why did I need chemo? i just needed to rest some right? Just needed to take more iron or eat better. I didn’t have a bump or lump, no pain, no tumor.

In the parking lot after I got my little paper telling me where to go and when to show up for my first chemo treatment, Matt stood by his car with his arms crossed. he had planned on something different. Now his future was ruined because of the boat anchor swimming through my bloodstream. He said, "I can't do this. I saw my life moving in a different direction and it's not toward months of hospital stays and puking and hair loss." I don’t remember seeing him drive off. My head was spinning. He needed time to deal with the shock. He would adjust and be with me right? Was I delusional? Should I have seen this coming too? How many times since that day have I told myself that, “It’s better to know now.” Who was I trying to convince? He made his decision, he didn’t need a lecture, begging, or berating. So…. Was I trying to convince myself that being left “now” would be easier than being left “later?”

I thought, chemo cant be that bad right? It's just an IV, I wont really feel anything, I might get a little sick, but it will be ok, I'll manage. I’ll make it, I’ll beat this. I was strong, athletic and had what I proudly considered to be some measure of mental toughness. I learned a lot about what tough was in those first few months. And the more I learned, the more I recognized my lack of it, in fact, lost the desire to even be tough. I wanted to be weak and cowardly. I wanted to run away, hide, deny it all.

Somewhere in the middle of having a hose attached to my chest I guess I came to terms in some small way with this as where I needed to be. this was how it was going to be at least for a little while. Somehow I would just face each moment as it came. Pretty words. I always thought that “mirage” was something that weak people fell for. But in those first weeks that dragged into months, I understood mirage. How real it looks, just out of reach, this would cure it all, these were magic drugs and all I had to do was walk just a little farther and I would be there. It would be over and I would magically “arrive” at that mirage in front of me. I began to wonder at what point the mirage disappears. Is it all at once? You look away and then look back and suddenly it’s gone? Or does it fade in front of your eyes? Becoming gradually more transparent. I spent a lot of time blinking, not knowing what reality was.

I met a woman once who was there for chemo. she was loud and angry and she wore a t-shirt that said in big red letters..... FUCK CANCER. I was at once repulsed by the profanity and yet drawn to the concept. She was beating the odds, the chemo was working, she hoped to be cancer free at her next checkup. Did I have to get hostile and offensive to be able to win this battle? Or could I just sneak through and be on my way?

Could I run away and hide, like I had for all my life? Changing my phone number, changing my p.o. box, moving, selling my car so I wouldn't have registerable trackable plates, changing my hair, suspicious of every person I met who seemed overly interested in me. What did they know? more importantly WHO did they know? somehow I figured the cancer would still track me. Just like he did. So far away, and yet always there hiding, waiting for me to look away, miss a step. When I got the package in the mail, with a little plain card inside. I knew then, I would never be free of him until one of us was dead. And clearly he was making a bid for that to be me. I started running again. I figure cancer will track me no matter how far I run..... just like he will.

for weeks that leaked into months I quietly carefully obeyed, went to all my appointments, ate right, exercised more carefully, tried to rest, tried to let it roll over me. i was tired, like hit by a truck tired. but it was controllable. I had always thought that working as a junior editor was just a money job, I had no aspirations to high end editorial staff, so working from home was a blessing in a way. I could blissfully fall asleep at my computer and no one was the wiser. I was losing my hair but that was hidable... to some extent, though when I started to lose the hair on my eyebrows, even the soft fuzzy hair on my arms, I dreaded going out in public, like being naked, you see the stares of people who are actively trying not to stare. I heard mothers shush their children. I saw it all, pity, disgust, embarrassment.... it all registered. No more hiding here...

I would go to the store at 1 am just to avoid people moving subtley away from me in line, hearing the conversation slowly go from normal to whispers to silence. I hated using public transportation, sitting next to parents who try carefully, discreetly to shield their children from the plague. So after having sold my car to hide from my father, I purchased a car to hide from the world.

But there were up days too. Days when eating was fine and the weather was nice and i felt no one was following me and i would take the telescope out to the country late at night and look up at the stars and wonder who was up there. I have go-to software on my telescope and for the longest time it never worked correctly no matter how I collimated my telescope. suddenly my go-to software worked, and i saw things i'd never seen before. i saw venus, just before sunrise and jupiter when the season changed. if our planet slid a mere few miles closer to our star, our balance of nitrogen and oxygen would completely change, vaporizing most of our water mass and distilling it into the air which would perpetually throw our planet into a more oblong and catastrophic orbit. A few miles too far from the sun and we would crystallize most of our water and reduce the growing season to a few weeks, rendering most of the planet capable of growing nothing more than moss or tundra plants, thereby killing off livestock who need the plant life to live off of. It put into perspective my position on this round rock. How truly finite I am. In the grand scheme of things, only a small puff of vapor. And somewhere inside me something ached a little at the increasing knowledge that I was alone, and terrified.

Chemo the second time around. It wasn’t working. I felt badly for the young oncologist who had to come in and tell me all this. He spent a lot of time looking at the floor, so I thought maybe I should look there too. So the next option was radiation. Specifically intrathecal radiation. a port into my neck through to my spine. The procedure was intimidating, your head needs to be absolutely perfectly still, but you need to be awake so that they can make sure that they are not conflicting nerves. They put you in what they affectionately I suppose, refer to as.. the mask. a tight white mesh vinyl net stretched over my entire head and screwed into a plexiglass frame . They used an ultra sound to locate the small space they needed and then rolling the whole bed over so that I was looking at the floor I heard the drill whining. I wanted to scream but I couldn’t open my mouth. I felt what I had thought was water hitting the back of my head, only to later when they took the mesh mask off, see spatters of blood and flecks of bone in it. I sat wide eyed, stunned, in shock I suppose. I remember sitting in the bed looking at the wall and starting to shake. I felt the temperature in the room was 10 degrees. I wanted to throw up, I wanted to curl up. I was terrified to turn my head to look at the nurse when she walked in. I was shaking so badly they couldn’t flush the port. The nurse smiled and said, “It’s ok, this is normal.” Normal? Nothing about this is normal. Just sit by my bed for a minute ok? Just sit and hold my hand for just a minute. Tell me jokes, tell me it will be ok, lie to me, talk about your life, your family, how you took the trash out this morning and stopped at starbucks on the way in. Just hold my hand, dont leave me here right now. But I swallowed all those words and picked a spot on the wall. I must have stared at that spot for hours, focusing on every thing about it, anything about it. Anything but the hole in my neck. It was days before I could screw up my nerve to reach back and feel the plastic port. I remember touching it like it would bite me, wondering if it would hurt inside my neck, wondering, what if I rolled over and it moved out of place, what if I was paralyzed. So many what ifs, so few answers to them.

I started to go through longer periods as an inpatient…. Or.. Inmate. I began to lose myself in a swamp of pity. On some level I guess I saw it coming and decided to be proactive if that was possible. Going down to pediatrics was a mixed bag. Seeing them suffer and smile was confusing, wonderful, horrible. I hated it and loved it. I wanted to be there and hated going. There is something awkward about creating a friendship you know will never last. Even those who got better, they would not be coming back for sweet emotional visits. They were kids, they had lives to lead, when they escaped they flew, just like it should be.

They included me in their secret club. Me the older kid, I felt honored and insulted at the same time. I didn’t want to be a part of this club. I didn’t want to pay dues.

There were no age restrictions. I learned the special code, the special language we shared. I learned what we did and didn’t talk about in our club. We didn’t talk about the weather, or politics, or the stock market. In our club the rack by the door holds our outside armor. We don't wear our bandanas or our baseball caps in the clubhouse. We only do that outside, for you. So you don’t have to look away in embarrassment, or stand there confused, not knowing if you should politely pretend to not notice, or try to hold our gaze.

We don't say, “how are you feeling today?” We know you ask out of kindness, but we also know what all the acceptable answers are. “Hanging in there!” “Well there are good days and bad.” “Fighting the fight!” “Doing ok” All of them lies to comfort you.

They taught me their secret code. No one walks out alone. That’s all. No one walks out alone. I remember when I learned that code. It is forever etched across my heart. Seared into my memory. It is our mantra, never far from our lips. Whispered at night when we are alone and afraid. I went into peds like I did most days. I knew the second the door swung open that something was different. Like a low hum you can’t quite identify but walk from room to room to find. It didn’t take long. It was Rodney, who put his hand in mine and said, “come on we have to go, Ben’s walking out.” I met Ben only a few days ago. And I knew he wasn’t walking. It didn’t take me long to get the lingo and it didn’t take Ben long to walk out. We stood like a well practiced chorus quietly outside his room. Waiting for his family to stumble out, numb, dumb. His mom walked out like all was well saying, “NO” over and over. Angrily yanking her arm away from her husband who was trying desperately to cling to her, for either her own comfort or… maybe for his. We filed in slowly. Let the ritual begin. First the pronouncement. “He’s dead” Paul said. We didn’t feel the need to soften it up, call it “passing away” or “sleeping.” He was dead. But something in us needed to say it. To hear those flat stark words echo across the room. We look up at the heart monitor. We all have one, we know how to read them now. We hear the subtle changes in the tones, we can tell who’s struggling, who is on the edge. The line still leads to the patches on his chest. We stare at the thin green line, it seems to fascinate us all. The pain pump isn’t clicking anymore and someone took out the line that led into his thin vein-lined arm. The florescent light makes him look transparent and hollow. His lips turning light blue, his body cooling rapidly. The natural muscle tone gone, making him appear somehow flat. We close in around him. We aren’t afraid to touch him. We rub his head and stroked his hands. No one walks out alone.

At that moment I looked down at Rodney, 8 years old, looking at Ben, 6 years old. Rodney was growing up. This little boy is seeing things his little 8 year old eyes were never meant to see. He is holding the hand of a dead child who should never be dead. And a horrible hideous evil thought entered my mind….. Everyone should watch a child die. It would change every priority in your life. All the business and bills, all the petty fights, the mindless acquisitions, the concern over global warming and the world economy. Would all fade away in that one stark defining moment. Rodney is better now, he’s gone, I’ve never seen him again. And part of me hopes I never will. But Rodney’s life will be forever changed because of those moments that he took to hold the hand of a dead child. And I think it likely that those around Rodney will likely be changed too. And what about Ben? What do you do that makes a lasting memory? He couldn’t feel us holding his hand, rubbing his head, bending over to brush my lips across his eyelids. We do it for us, not for him. To say… I’m still human, I still care, and I promise to never forget.

It wouldn’t be the last time we performed our sacred secret ritual. It travelled like magic, like birds gathering to escape the coming cold. We collected outside the room, or hung at the edge of the hall, waiting. Sometimes their family members would see us and sensing our unique and terrible bond, would invite us in. Then we would file in and stand in the corner, watching, holding our breath. We rarely watched the one walking out. We watched the family. We watched them like hawks. Our twisted desire to experience our own walk out, vicariously. Would someone hold my hand? Would anyone even know? No one walks out alone. I mumble it a lot it seems. Who am I trying to convince? Someone else? Or myself.

There is one room we don’t talk about. The room with the yellow line. The bed is across the room and the yellow line marks the safety zone that visitors must not cross. They come in and stare across that void, eyes wide, wondering what to expect. The glowing radiation button pulses on the wall telling them when the exhibit closes. And they smile that smile that never touches their eyes and say, “Hang in there.” and turn to leave, trying to walk casually, but we sense that thinly veiled desire to bolt out the door and down the hall.

No lack of humor in our club. A special kind of maudlin dark humor. We shared the secret symptoms with the clinical names. People who had chemo ... got nausea.... but it doesn't really adequately describe the open sea waves that crash over you. the feeling of suddenly breaking out in a sweat and being too tired to be able to race to the bathroom, too weak to stand up and bend over to throw up, sitting for hours on the bathroom floor because i knew i would just end up back here shortly anyway. feeling that horrible slow grinding pop when i wretched so hard my ribs separated from my sternum and cracked. Feeling the pressure fill my head and as my platelet count dropped each time I threw up my nose started to bleed for half an hour. Falling asleep curled beneath the sink with my head on a towel too tired to care that my face was covered with blood. Prize fighters wore their bloodied faces as proud badges of their conquest. I was too beaten to even retreat. Too humiliated to care. Too alone, too tired to even cry for someone else’s benefit or attention.

The irony of the cure. Methotrexate, tamoxifen, Glevac, ifosfamide and doxorubicin. The chemical names sound so much more fancy than just calling it what it is. They are carefully controlled, monitored, studied. They come with an actual book of efficacy trials and side effect studies. But we knew what they really are. Deadly toxins. Not one of them safe to handle by….. Normal people. They could as easily kill as cure. And often did. Why am I doing this? Remind me again? Why do I have to make these decisions? Like listening to a mathematician talk about analytical trigonometry, I had no idea half of what they were telling me. How many times would I be asked, “Do you want to talk to your family about some of these decisions?” …. “Where are your mom and dad honey?” ….. “Why don’t you talk about this with your family and we’ll talk more tomorrow.” ….. After a while I started simply saying ok, sure, I’ll do that and get back to you. And … after a while, I could tell it got charted. Somewhere in that electronic file are the words….. Don’t ask about her family, they either aren’t here or aren’t coming. Worded clinically of course, in the best possible politically correct wording. They stopped asking, and I stopped answering. The oncology advocate still occasionally says… is there anyone I can add to contact, just so they know what you’re going through? Just so you can have someone in your corner? Who would that be? Patrice, who is getting married soon and planning a future full of life? Matt, who felt the need to bring his new girlfriend to the hospital, to tell me she was pregnant, that they were getting married and… “just wanted you to know that I feel I can move on now Gabs, I hope you can too.” I felt so badly for her. Standing there awkwardly shifting from one foot to another. Looking at the floor, glancing at him, trying desperately to look at anything but me.

Am I weak to want out? Is it a sign of giving up that I want someone to make these decisions for me? Is it pathetic to want to have a hand to hold? To want to be held? How much do I put my nurses through, late at night, when I wake up screaming from a nightmare? How much blood have I wasted that could have gone to others? Bag after bag, dripping away. I watched the original Dickens “Christmas Carol” a few months ago and the scene where scrooge is faced with the orphans and the people on the street and describes them as the surplus of the earth, a drain on the system. Have I become that? Just a consumer.. Of drugs, blood, oxygen, time.

No one walks out alone. I seem to be begging it. It seems more a question than a statement to me.

I am not really sure why i wrote this. The likelihood of it being read by anyone but me is pretty remote. I am not sure what it is within humans that makes us need to examine our lives. but... like most examinations i've undergone recently.... i find that i have flunked out. no amount of cramming seems to be working for me now. I was hoping for an essay test. Something I could cleverly bullshit my way through. Use lots of circular logic and big impressive words. Discuss my case in a clinical and detached manner. But my body isn’t listening. Am I still in this fight? I see the downward trend. Even as I tell myself that I’m still fighting, I’m still getting up. The doubt creeps in and the energy to push it away, to consciously choose to not be buried by the influx of tests, procedures, drugs, results….. Is the energy expenditure worth the eventual outcome? If I win then I guess so.

When will I be free? Truly free. Is anyone? Or is that a mirage we are all chasing?