jealous

Jealous

Connie, I am jealous of Connie

We got to know each other during chemo, months ago. We are nearly the same age, she is 3 years older than I am. We got to talking, about nothing in particular, then we talked about work, we talked about food, we talked about our mutual disdain for Hillary Clinton. We disagreed on the topic of Obama, we agreed on the subject of pizza and movies. We laughed about the funky hoses in our chest as they pumped toxins into our bodies. Deadly chemicals that were suppose to cure us. There has to be some sort of statement there. Which is worse? The cure? Or the Disease?

She had a blonde bob, I had long, long brown hair. We both had dreams of never sitting in these chairs that were designed to bring a homey feel to an unhomey place. We exchanged phone numbers, e-mail addresses and went our separate ways. She called me the very next day. It was kind of a shock. It is kind of one of those things where… do I want to get to know someone, whose connection brings up negative stuff? But we agreed to meet at Panera and stuffed ourselves with muffins and strong coffee.

We talked about the chemo mostly. All the other small talk was awkwardly out of the way. The only connection we really had was the port we hid under our shirts. Like blood brothers, or drug brothers. She had breast cancer. She found a lump in the shower one morning and called the doctor the next day. Went in the day after that and 2 weeks later was in the chair getting her tubes in.

She was dating, a subject I didn’t really want to touch. She worked at a bank in the loan department. She hated her job, but made decent money. Her boss was frustrated with her time off work, but her insurance was good and he couldn’t really force the issue of her medical leave.

We never did chemo together again, but we talked almost every day on e-mail, or we texted each other and occasionally we would meet, usually at Panera or Starbucks.

We started to lose our hair together. When I started to see handfuls of hair coming out in the shower I fought it tooth and nail. I first cut it shoulder length so it wouldn’t be so shocking to see those long strands piling up on the floor. Then in despair I cut it into a short bob, not unlike what Connie had started with. Connie however, totally succumbed to the process and shaved her own head and the next week proudly walked into Panera with a henna tattoo on her shiny skull. She laughed at my reaction and I laughed to keep up with her. That was when it hit me that I was jealous of Connie. How did she have the ability to be proud of what she was going through? What was it that she had that I lacked? that ability to flaunt your nakedness, while I hid in the corner in shame. I wasn't jealous of the baldness or the tattoo or her looks. I was jealous of the untouchable, undefeatable something that evaded me, like touching a shadow, there, but not attainable.

We stopped meeting at Panera when we both realized that neither of us were eating, and the smell was making us both nauseated. So we met at the river park walkway. She brought her boyfriend and their 9 month old Labrador. It was the first time I felt awkward around her. It was as though I saw for the first time, that she had an ongoing life outside of the tubes and needles and drugs.

We missed a week here or there over the next few weeks. We were both in the middle of being too tired to move and too sick to move too far from the bathroom. We were both trying desperately to get better. We finally e-mailed and promised to touch base and meet at the mall the next week. She called a few days later and said that she had an appointment and we moved it to the next week.

I hadn’t seen her in a couple months. I am not sure what I expected. When I saw her, her henna tattoo was gone, disappeared under her fuzzy new hair growing. She had gained the weight she had lost, she looked strong and resolved and powerful. I was suddenly embarrassed that I had lost more weight, that my eyes were hollow despite the makeup that I wore to try to hide it. My head was covered with a baseball cap. We had a ritual when we met, that we would compare heads. She came in with a bandana and whipped it off to show fuzzy new blonde hair. I tried to laugh and I clapped and reached over and rubbed her head. But when she said… your turn. I couldn’t think of a good joke to come up with, I couldn’t think of a clever way to decline, I couldn’t think of anything at that moment…. But the differences that were separating us. I took my hat off and grinned that stupid grin that explains everything and nothing all at once.

She grinned back and started talking about visiting Florida with her boyfriend. She was going to work on her tan and…. Blah blah blah…. I never heard much more of the conversation. I smiled and nodded at all the right places.

We talked about chemo again, but… she was done, and I wasn’t. We had both done chemo, that topic was old now. She was moving on. Her blood work was getting better, she was due to have a mammogram in the next couple weeks.

More time went by. We still e-mailed, but not as frequently. They were short.. "Hey how are you doing baldy," type e-mails. We said stuff like, "hey we have to get together again," and I think we both meant it at the time, but time was marching on for both of us. We finally set a date, we were back to Panera.

I got there early, I didn’t know why I was nervous. I sat at the window in the corner and watched her park. I quickly put my coat back on, to hide how much weight I’d lost and that my clothes hung off me. She looked wonderful. Her hair was dyed bright red/blonde and it was short, but growing well. She wore a blouse cut low to show off her figure and to prove in spite that the breast cancer had not won. Everything about her said…. I WIN! I suddenly wanted to sneak out the back door and call her cell and tell her that something had come up, that I couldn’t come, I’m sorry, maybe next week. But I had committed to this humiliation. I had to see it through.

Her mammogram had come back clean. She was now technically cancer free. She and her boyfriend had moved in together with their crazy lab and she was talking future. It was not a shock to me that she did not ask about the leukemia. And I was not foolish enough to remind her of it. So I talked about shopping, which I hate, and the movies I’d love to see that I actually never really planned on seeing. I laughed and did the whole, girls night out gig. Inside I was dizzy. The nausea had returned but this time I couldn't blame it on methotrexate.

I took my telescope out to the country. I lay in the grass and looked up out there. Where are you? Do you see me? What is my place here? Where do I fit in? Do I fit in at all? "Therefore the bell that rings to a sermon, calls not the preacher only, but upon the congregation to come; so this bell calls us all. No man is an island entire of itself." I shut my eyes tight, I remembered when I first read those words. I had always liked Donne, though he was typically melancoly, his grasp of humanity was almost comforting in how diminshed our individual condition, for the collected connection we have with mankind on a whole. When I was younger I could imagine a grand bell ringing slow and low, stately from the tower of an old church. Now the buzz in my head was tinny and small and annoying. The starts blurred and disappeared in tears.

Was I not happy for Connie? I think I was. I wanted to be. I did not want to see her grow weak and sick and see that grey/yellow pallor that … well, that I had. What was wrong with me? Am I so incredibly shallow, such a poor friend, that I could only see her success as a threat to my failure? Am I really that flawed and selfish? Would I have rather had her be sick just so she could be sick with me? Is that really what went through my mind? I tend to quickly tell myself … NO, I would never do something that horrid. But I am left wondering if that’s quite right. Does misery love company? Would I have been more gracious if the tables had been turned? Would I have made sure to ask her how she was doing? Instead of quietly avoiding the obvious answer.


We hugged a quick, pals hug on the way out of Panera. She said … "I’ll be in touch!" An obvious lie. I said, "Absolutely!" Another lie. Did we both know then that we were moving on two different tracks away from each other? What did I expect? If I were free today, from the tubes and the cold floors and the medical cleanliness and the masks and the beeping and the gloves and needles…. Would I swallow my fear of this place, to go back in and invest my life in my new little friends who are still… on the inside….like prison. I sit at my window and watch visitors come and go. There is a difference when they come in… they’re on a mission, they plod forward, bent on the purpose of going into the institution… getting the name badge, going through the big swinging doors and hearing all those sounds that tell them that this place is not where people are suppose to be. This is where they keep the inmates. When I see them leave, their steps are lighter, almost always they move faster, they hold their heads up, maybe to feel the wind, smell the fresh air. They are free.

I remember seeing him ride in on a flame red sofTail and park it on the sidewalk. I laughed outloud and clapped at him though he had no idea I was up there. No idea who I was, he wasn't here to see me. No one was, but I often sat at my window and pretended that they were coming to see me, just for a few minutes. He walked in the same way they all did, head down. I watched his bike for him while he was in the hospital visiting some nameless faceless person. I saw him coming out and suddenly something inside me made me grind my teeth. “Come BACK!!!” I felt like screaming….. Begging, take me with you. Please… As he jumped the curb and got to his bike, I stood up and put my hands on the window…. please….and stood beside his bike and threw his leg over …. Wait…...please don't go… and I imagined the roar, and the rumble. And then he was gone. I shut my eyes and imagined being on that bike, feeling that vibration rumble through my body, the acceleration and the wind. Moving down some road to somewhere.... anywhere.

Everyone moves on. Connie, visitors, me….. Everyone moves on. I just can’t see where I’m going anymore.

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. 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 assumed the blood work was just standard procedure with this sort of check up type thing.

I’m not sure how it is my life started to unravel so quickly after that. one test led to another and those first few weeks seem SO long ago now. I had no idea what Leukemia was, and I didn’t want to know. I spent a lot of time looking it up 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 with 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, my boyfriend 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.

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.

Somewhere in the middle of having a hose attached to my chest I guess I came to terms 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.

I met a woman who was there for chemo. she was loud and angry and she wore a t-shirt that said in big red letters..... F*#K CANCER. I was at once repulsed by the profanity and yet drawn to the concept. She was beating the odds, did I have to get hostile and offensive to be able to win this battle? 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. when I got the package in the mail, with a little plain card inside. and I started running again. I figure this 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 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 childen. I saw it all, pity,disgust, embarassment.... it all registered. no more hiding here, no changing hair color, no changing style....

I would go to the store at 1 am just to avoid people moving subtely 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.

But there were up days too. Days when eating was fine and the weather was nice and i felt no one as 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.


The chemo wasn't working and the cancer spread to my central nervous system. as they talked about possible procedures my mind stuck on the words possible seizures. I'd seen a girl have a seizure once. i was in a store and just waiting in line to pay behind 4 or 5 other people. i never saw what happened in he beginning, but when she hit the floor she had everyone's attention. She was stiff and jerking and her eyes were open. another guy and i jumped over the counter and we kind of knelt there beside her, neither of us knowin what to do. he finally had the sense to tell someone to call the manager and an ambulance. I held her head which was banging on the concrete floor. She was strong, it shocked me, i dont know if i expected limpness, but she was rigid and when she shook it knocked us almost off our knees. I was shaken for days. I thought of her so much, i went back to the store and asked about her. she was fine, epilepsy, it was... her version of normal. but it had scared the daylights out of me. I didn't want that normal. so the next option was radiation. specifially 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. so they put you in what they affectionately i suppose, refer to as.. the mask. a tight white mesh vinyl net stretched over the 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. 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 the 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. We filed in slowly. Let the ritual begin. First the pronouncement. “He’s dead” Matt 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 flat. We close in around him. We aren’t afraid to touch him. We rub his head and stroke his hands. No one walks out alone.

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.

The irony of the cure. Methotrexate, tamoxifen, Glevac, ifosfamide and doxorubicin. Chemical names with carefully outlined and well studied side effects. But we knew what they really were. Deadly toxins. Not one of them safe to handle by….. Normal … people. They could as easily kill as cure. Why were we doing this? Remind me again?

Who will walk out today? No one walks out alone.

nausea, hairloss, tiredness, rinse repeat.

it seems now that almost each day, a new little crop of challenges. blood counts down, fluid build up in my lungs, enlargement of my liver and spleen, decrease function in my kidneys. a merry-go-round of unmerry proportions. and i want to get off now please.

i'll write more later. i am not really sure why i wrote this,the liklihood 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. this will be your final test. and it will not be graded.... it will simply be pass ... or fail.