How do you tell people you have cancer? You cannot really make a hundred phone calls from your hospital bed to deliver the news that you have a disease that may eventually kill you. Who do you call first? Should I call the love of my life or my aunts and uncles? Could I handle the response from the masses or should I assume chorus of well wishers would just arrive?
The first person I called was Brit. She is my best friend and always will be. Any important life decision I have made in recent years has her stamp of approval, or denial, on it, reassuring that she is not only what, but who matters most to me in my life outside of my immediate family. I had to call her first to break the news that I would not be accompanying her across the southwest United States during her move from Flagstaff, AZ to Austin, TX. Everything was in store. I was to fly into Phoenix, she would pick me up, and off we would head into the eastern sun. The two of us had never taken a road trip together and this was to be our maiden voyage.
We had spoken over the phones many nights imagining the roadside motor lodges we would stay in; neon vacancy signs pulling us off the highway. We would drink bourbon from the bottle and smoke American Spirits, sitting in plastic patio chairs, feet up on the bumper of our car. We would get drunk and share the balmy night with laughter and talks of our futures. Passing out on a musty mattress covered with a floral bedspread would have us waking to an ashtray saying we were up all night.
For some reason, the first concern I had when I was diagnosed was of letting my best friend down. Regardless if I ever truly wanted to do something, if committed, I would be there to fulfill my requirements and duties. I had been let down too many times to let others down.
When you get to a hospital everyone wants to be your friends but no one wants to tell you what is wrong with you. Each passing nurse and doctor kindly smiles and moves on. I was quickly wheeled to a room full of dickheads. These doctors looked at me like I was wasting their time. My health was of the least bit of importance to them. There was one guy in particular, that if I ever saw him on the streets, I would approach him and fuck him up. Afterwards, I would say to him what he casually said to me after he struck a nerve that shook my body, causing me to hold on and almost fall off of the examination table.
I was stripped down to my boxer briefs, covered with a small scrub. Face down on this sticky grey vinyl sheet of depression, I imagined the other faces that rubbed where mine was currently rubbing. One nurse took to cleaning my lower back and injecting me with some sort of numbing formula I kept quiet, cold sweat and all, looking up at this motherfucker with bleach blonde tips and a shirt that was three sizes too small. The look on his face did not reassure me that he was going to perform his function as needed, rather the look revealed that he couldn’t wait to have another dick in his mouth. This stupid fuck just sat there chewing gum waiting for the nurse to call him in.
After what seemed like not enough time, the dickbag walked in and began the procedure that required a long needle to touch my spine. The first time he missed, unaware of an actual human life, mine, lying right next to him, full of agony, pain, and sadness. As the needle slipped by my spine and tapped my nerve, he continued chomping his gums, looking at the monitor, releasing a small, “Ooops.”
Oooops? You don’t fucking say oooops when you mess up on someone’s spinal tap. You say oooops when you forget to pick up the milk or you break a glass. At best you do so if you forgot your wife’s birthday or simply forgot pick up the kids. This dickless bastard was so concerned with the shot to the back of the throat the he was going to get from the next twink that he gave me a shock so powerful and memorable, I will never for the life of me forget the face that did this. And yes, when I see him, I will strike down upon him with all my force, and just look down as I kick him in the ribs and say, “Oooops.”
After my spinal tap I wheeled my way back to my room. My step mom is a Kaiser nurse so she had set me up with a top story corner room with great light and no roommate. My doctor was worried about my health and the intensity of the cancer so she argued that I should be on the main floor, closer to the nurses, and of course, with another person sharing the space.
Apparently everyone else was more concerned about my health than I was.
As I sat in the room the influx of visitors streamed in. Family members flew into town in a matter of hours, friends came from Seattle, Los Angeles, Connecticut, and New York, and I was just satisfied to know what was wrong with me. My spirits were high and my mood was calm. Something told me I needed this to happen. I became aware of my disease as soon as I heard the news and learned to live with it immediately. If it were to kill me it already failed. I was wining this war, I just had to get across enemy lines to do so.
Sitting in my room, looking at the faces around me, I couldn’t help but think to myself, “Get the fuck out!” For those of you that know me, I love my friends and family more than anything. I am always one to socialize, interact, and organize events involving many faces. But when it comes down to my personal space, it is just that; my own fucking space. Unless you are naked, don’t tell me what to do. Unless you are my mother or father don’t tell me what to do. In this instance, the only person that could tell me what to do was my doctor, so everyone else, get the fuck out before I turn into an asshole that deserves to have cancer, rather than a loved friend that you could only wish the best for.
The hours slowly moved and my patience grew weak. It was mid afternoon on the fourth of August and it was as if I just ran a marathon. Not only was my mind tired, but also my body was powerless and vulnerable. I once read that as far as our brain is concerned, it can work as well at the end of eight or twelve hours as it did at the beginning, making the brain tireless. Psychiatrists say that most of our fatigue derives from our mental and emotional attitudes. The argument continues to say,
“The greater part of the fatigue from which we suffer is of mental origin; in fact exhaustion of purely physical origin is rare.”
I felt the mental exhaustion and what will probably be the only true physical exhaustion my life will bring. Searching for smiles became difficult. I would not appear powerless in front of those surrounding me. I could not let my guard down. I did not know why.
A handful of doctors came and went as they pleased. Some said a few words, others observed. I was a case to be studied by a lot of the young doctors and the feeling of a lab rat set in. Voices became noises and images became spots. My head would fall to one side only to be snapped back upright to gather what I could. My step mom had pulled some strings and gotten the pathology department to stay late and work on the weekend. A gentleman named Doctor Ellis assured me I would be okay. He approached my bedside. The thick grey mustache and sandy brown hair made me welcome him with a smile and tears. “
Peter, we are going to get you taken care of and out of here soon. I have a conference to go to but Dr. Trubowitz will make sure everything runs smoothly and she will contact me if she needs me to fly back….she’ll take care of you.”
When Phoebe Trubowitz walked into my life I had not another worry. She was a bright Jewish girl from Queens. She smiled from one side of her face and loved to giggle. You could see the little girl in her that grew up loving the Mets. She had an honest smile and a tone that made me feel safe. First thing she said to me was, “You’re going to have to lose that Dodgers hat!”
This has been an ongoing battle between us, even to this day. Her being the die-hard Mets fan that she is makes it difficult to be a Dodger fan. She has had a strong dislike for the Dodgers since the early days when Robert Moses forced them to leave Brooklyn and relocate in Los Angeles. She shared her hate with a smile, and I knew that this woman’s decisions over the next 48 hours would save my life. She was not fucking around but fuck around we did. She saw that I had a dark, sick and twisted humor about the entire situation; and she went with it. At one pint she had explained my upcoming operation and how I would be knocked out and put under the knife. I asked her if she could leave an extremely large scar that stretched from my collarbone to my ear in the shape of lightning bolt. She just shook her head in confusion, slowly looking down at her clipboard mumbling and chuckling, “You’re sick you know that?”
After the banter wore off, the serious side of business was discussed. I needed to have lymph node biopsy to finally determine what kind of cancer I had. This is an odd feeling, knowing you have cancer, yet you do not know what kind of cancer is slowly killing you. I have cancer. This is a tough thing to say. It was all starting to settle in. Hours later, after an MRI, finger in the ass, Dr. Kid telling me information I had already heard, ambulance rides, spinal taps, and you know…I have yet to eat anything today. I am starving. God I wish I could have had French toast with my father this morning.
The operation was scheduled for the following morning. The path to analyze my lymph nodes was an obvious one due to the location of my tumor. The tumor had set up camp on the inside of my spinal cord, posing a far too dangerous risk for doctors to go in and simply remove it. The chances of paralysis were too high. If the chances of paralysis were high, the odds of me taking my own life were higher. The lymph node biopsy it was.
Gathering my thoughts I asked if I could eat some food. The hospital cafeteria was now currently closed, and the idea of a greasy meal in me felt so good. Over the course of the summer my appetite had dwindled and my weight was trimmed. I kept thinking to myself, “Well at least I’m losing weight through all this pain.” I had lost about 20 pounds due to lack of appetite. It was not that food sounded so foreign to me, rather I could hardly pass a bowel movement often enough to occupy any amounts of food in my intestines. I would sit for hours some nights in pain, trying to pass what I thought was surely a fecal specimen that had long since gone bad. Something was stuck inside of me, deep behind my spine. My tumor would not allow me to successfully evacuate any remains and urinating became a hopeful chore. I was an old man living in a young man’s body. Limping and hobbling around, having trouble passing bowel movements and irregular urinating, had me wondering where my cane and dentures ended up. I was truly miserable.
Before eating the nurse gave me a couple of red gel tabs. As she handed them to me I immediately looked and thought, “Red Pill? Blue Pill?” If only the red pill would take me through the same adventures Neo fell into in The Matrix. This little red pill would create many more problems, but allow me to solve those at hand, allowing me to maintain focus and evolve as the chosen one. Fuck. These pills were a common laxative used to help create a bowel movement. I saw them as an easy way to take a shit.
After swallowing those down along with a couple more vicodin, I placed an order for two KFC chicken sandwiches, fries, and some Blue Frost Gatorade. I felt no shame what so ever. The feeling of, “I have cancer and I can do what-ever-the-fuck-I want” settled in and I needed a pick me up.
Seeing some old faces really made me want a fucking cigarette. Sometimes a cigarette can really take the edge off whether you like them or not. I miss cigarettes. My food showed up and those around me just watched. I felt like a fucking newborn elephant at the zoo that people from near and far had come to witness for the first time. People just watched, knowing they would never know how it felt, but it felt so good to watch. I could see the sadness in so many eyes, but could not help but see the faces of, “Better you than me.”
After a few bites of my sandwich and inhaling of fries, something happened inside of me. A valve was opened and the pressure had burst through the walls and broken past the valve, shattering it into little pieces. The current flowing through me was unstoppable and moving at a great speed. A flash flood of mud was making its way through my lower intestines and looking to make it across the barren terrain. I knew exactly what was happening.
Excusing myself from the hospital bed, I made my way to the bathroom. Sitting on that cold porcelain gave me a feeling I had forgotten for months. My backed up system and burst and my long awaited shit finally arrived. (Continue to next paragraph if graphic detail of internal specimens is too much) I shit forty shits in one sitting. I passed a cow pie before the first flush, worries that I would clog the toilet and those around me would know what had just happened. Thank god for the industrial strength plumbing in hospitals. This dump in anything other than high commercial grade plumbing would have filled a septic tank. As I continued to fill the toiled bowl with shit alone, I continued to flush…once, twice, three times, and finally a fourth. A lot of people use the expression of losing pounds while passing, but this was truly a spectacle that while morbidly disgusting and appalling, was incredibly unique and rewarding. When you don’t shit right for a summer this is like going to Disneyland.
I returned to my hospital bed with some spring in my stride. I downed what remained of the sandwiches, finished my fries, and washed it all down with my Gatorade. My day was over.
A hospital is a sad scary place to wake up alone. I refused that anyone stay overnight and woke up to blue skies in the west, looking between the whites of the blinds. It was going to be a beautiful day; I was going to find out what kind of cancer I had. What was unique and beautiful about my findings of disease was the fact that the pathology department is usually off on weekends. My step mom had some influence at the hospital that allowed for my operation and testing to take place over the weekend rather than wait until Monday, as I withered away in the sick box. The crowd slowly made their way back into the room, and the sad silence and beauty behind it vanished almost as quick as it had appeared. The pain finally settled. My back hurt, my body hurt, my heart hurt, my mind hurt. I just wanted to be normal. The day began with surgery prep and a number of lectures from nurses and doctors alike. There was not much to say in the room. Those I wanted to talk to had not yet arrived or were too far to come. I had yet to speak to handful of my closest friends because I was scared.
All those that knew I had fallen ill had not heard it first word from my mouth. My sister took care of MY ENTIRE PR and stepped up. My sister is my best friend and means the world to me. I was her big brother and to show a sign of weakness in front of her broke my heart. From the moment she found out I was sick she immediately had faith that I would be okay and began going through my phone, calling those she knew would recognize my sickness. Choosing to do so was much easier for her to do than myself. This would allow her to be occupied with a task, something that would take her away from me and allow her to repeat now just to herself, but many of my friends what had happened to me. The more and more she heard herself say this, the easier it would be to accept that I was sick. After a long day she arrived in the room exhausted, asking if there was anyone else she could call. She had done more than any big brother could ask for. All I could do was hope I would not let her down.
My sister and I had developed an irreplaceable bond as we got older. We share birthdays, but not just any birthday. We are not twins. We are both born on Christmas Day, three years apart. We had grown up sharing birthdays with family dinners and annoyingly long ceremonial events each Christmas. The same question would come up at every check out stand that required some sort of identification.
“Oh my God you’re born on Christmas!”
Yea no shit you fucking idiot.
“I bet you always get screwed on presents don’t you.”
“Actually no, and what’s weird is that my sister and I are BOTH born on Christmas, THREE years apart.”
“No Way! What were your parents thinking?”
“I don’t know,” I say behind a fake smile that really means, “Give me my fucking you change you stupid fuck.”
There is nothing better than sharing a birthday with your best friend. My sister and I grew much closer when I went away to college. I remember that muggy New York summer. My sister, father and I had packed our bags and headed to Manhattan. The two were seeing me off to college. I had been accepted to Hofstra Univeristy and decided to go sight unseen. It was New York and I was 18 with nothing to lose.
As I lay dying I wandered the world. Looking back at the great times had over the course of a short lifetime allowed me to drown out the noise and create a feeling of despair. The despair came knowing I may not see these times again. Living the moments over again in my mind would help me forget cancer had captured me. I was able to escape reality, leaving my body for others to watch, as my mind took me elsewhere. The first place drifted was not to a place but rather a person, her name was Katie Ferre. The difference between Katie and Brit is I’ve slept with Katie. Brit would be appalled by this statement arguing that there is much more to her, substance and thought included. I found it hard to forget my first love, even harder to forget my second.
Everyone in the room knew I had cancer. Now it was time to determine specifics. The day had expired and the line of people slowly filed out and I was left alone. The sight of so many gave me angst and anger. The sight of an empty room gave me sadness.
The thought of escaping the hospital entered my mind. Not having much money I could not get very far. I had enough to get me a plane ticket to a foreign country and enough to get by for a couple of months. I could return to Costa Rica where I had once lived for five months, or head to Europe to take my life off the Cliffs of Moher in County Claire. Both felt tempting. I would need an accomplice. I played the scene out in my head a hundred times. But who would pick me up? Who is the one person that would go to the grave with my disappearance? It would have to be someone whom is close to me, yet far away from those around me. Who would want to be in my situation? I needed to get out of the hospital.
In the middle of the night I gathered my things. The gentleman I shared a room with had just shit his pants and had the attention of the night nurses. These nurses were the rookies that just finished nursing school, now stuck with the graveyard shift changing diapers on old men. My squandering would go unnoticed and vanishing from the west wing of the hospital would be an easy task. Slipping my socks on, I grabbed my hooded sweatshirt and shoes, anticipating an entrance from one of the nurses. It never happened. I laced up the sneakers and grabbed my shoulder bag packed with laptop, books, headphones, and snacks. This was it. My corner remained dark and I could now sneak out of the room and off into the night. Walking down the hallway, I maintained a painful stride of ease as if I knew where I was going. Hiding behind my Dodgers cap, I made it past the nursing station on off into the corridor that leads to the lobby. As my steps took me closer to freedom, my pace increased and I felt alive. I got to the hospital lobby and stopped. Proceeding outside, the balmy summer night entered my nostrils and sent a feeling of abandonment down the tip of every nerve. Was my reasoning sound? I had yet to find out what kind of cancer I had and was ready to abandon those around me for my own selfish reasons. My selfishness had gotten me here and it was time to face the consequences.
Standing outside looking in, the final moments arrived. Call a taxi, head home, grab a backpack and go? Head back in, jump in bed, wake up, have the operation, go through treatment, maybe make it maybe die? Death was on my mind and I could only think that it was inevitable. The power within me would allow the process of which my soul would pass. Right now those Cliffs of Moher looked oh so pleasant. Standing there for what felt like an entire evening, I cried. I turned around, scared to face what was about to happen, but could not let go of those closest to me. It was there that I died and knew the rebirth of a new me was about to take place.
With the sun came my sister. She wanted to be the first one there. My mothers and brothers followed. Looking back on the events of the evening, I knew I had made the right choice. Seeing those young faces, the faces of my blood, my siblings, I knew it was my responsibility to get through this, to live for them, to be there for them as long as they needed me. I could not let them be alone.
The fasting made me crazy. The day was chaotic and blurry. My OCD had kicked in and the room became incredibly organized. Passing the time by rearranging my belongings, the day still moved at a sluggish pace. It was finally time. Dr. Trubowitz came in and walked with me.
We walked slowly. It was time to face the demons. Hidden behind a thin pastel sheet, my body looked up to the lights, as I felt the chill of the OR cast over my skin. The lights showed shadows, and a mask was put over me. Told to count backwards from ten, I remember eight, and woke up in an unknown world. People in uniform around me walked around operating like the machines above. They had not yet noticed that I had come to and my eyes grew wide and my temper high. What the fuck was going on?
I was put in a wheelchair and rolled into an empty hallway as the cleaning crew of doctors wrapped up their procedures. Reaching up, I touched a bandage that graced the right side of my neck. I had been cut open. The doctors took out what looked like a cluster of grapes to test the cancer and determine how I was to be treated. Rolling down the hallway, everything seemed so unfamiliar. Returning to my room, the faces seemed so unreal. I had seen them before but did not want to see them right now. My nerves were high and my frustration was released on those around me. The day’s events had gone much quicker than anticipated and the results were arriving soon. The pain had escalated and the nurse gave me the option of morphine. An ear-to-ear smile and two clicks later, my face had immediately warmed up and a numbing sensation traveled through the lengths of my veins and back. I was fucked up. The night got much better.
I hid behind headphones, listening to the tracks that had shaped me over the course of the last few years. My appreciation for music had taken a new turn, playing guitar myself, and traveling endlessly to catch a glimpse of my favorite bands. Radiohead , Wilco, Built to Spill, and a number of other indie bands filled my ipod. I was a sucker for elaborate crescendos and multiple guitars that layered the emotions chord by chord. Drugs and music had been two of my favorite things. I had to sacrifice one of them, but at least I could get one last fix on the hospital’s dollar.
The doctor informed that the results from the pathology department would not be in till morning. I had asked to be alone in my room with my music and morphine. It was time for another couple of clicks and I was not going to hold back. The idea of taking the maximum of four clicks tempted me, but I was going to hold off on just two. Katie came into town from Seattle after a long day and a longer drive. She was the only one I wanted to see and she had finally arrived. Seeing her walk into the room took all the fear, worries, and pain away. Or was it the morphine? It was difficult to send others off and only let Katie in, but it was what I wanted. I had lost her over the course of travels and schooling. We had our run together building a friendship that would hold on forever, but as many couples do, we grew apart. She grew much further. It felt so good to have her next to me. I knew that my disease would not bring us back to what we once were, but it felt good if only for a few hours.
She showed up in an army green dress that formed to her beautiful shape. I always lusted for her lower half, those beautiful legs and thighs that held her ass so perfectly. She climbed up into bed, warm body against mine, and we laughed. I felt normal again; as normal as two old friends in a hospital bed can feel. I wanted to feel better. It was time for me to take my meds again and get some rest. Katie and I had laughed for hours, catching up on what had happened over the last year, looking into the future. I asked the nurse for four clicks of morphine and disappeared into the sheets. My face became flooded with fire and the lights turned blue, green, and eventually red. Paralysis was an immediate feeling, followed by euphoria, and then the ability to swallow was lost. A pit filled my air chamber and breathing became difficult. My eyes wouldn’t open and I could feel sweat across my brow and could not determine what was happening. Was I sleeping? Was I dreaming? The drugs would not escape me nor would I escape the powers within me. Then, as if a button had been switched off, a hand held onto mine, resting on the end of the bed. Katie could see my discomfort. She held on to my hand but let go of the tears. I could hear her quiet sniffles behind the curtains cast over my eyes. I did not want the moment to end. She turned my suffering into something so sweet and peaceful I will never forget it. I could feel her lips on my forehead, kissing me goodnight, disappearing as the exhaustion set in. The emotional ride I had put myself through with family, doctors, nurses, and now an old lover had worn me down to nothing. I could no longer hold on and my next moments disappeared as my head fell onto my shoulder, giving way to something so strange to me, sleep.
The next morning felt right. Waking to another empty room, I grabbed my headphones and listened to Wilco. Jeff Tweedy slowly strums his Gibson SG, singing of an old lover.
When I sat down on the bed next to you you started to cry…
As long as I can remember, I have always woken up with a song in mind. This one played in my head long before the summer sun made its way over the eastern hill.
I said, maybe if I leave, you’ll want me
To come back home
Or maybe all you mean, is leave me alone
At least that’s what you said
You’re irresistible when you get mad
Isn’t it sad, I’m immune
I thought it was cute
For you to kiss
My purple black eye
Even though I caught it from you
I still think we’re serious
At least that’s what you said…
Tweedy slowly spits out the last lyrics as Nels Cline turns up his guitar and drowns out any sadness with pain heard from the heart of his guitar. Half the story told comes from Tweedy’s lyrics while the rest is written on the strings and frets of a 1960s Fender Jaguar. The last notes drown away as the overdrive sends appropriate feedback through the monitors. I played it again.
Just then Katie walked into the room. She could have enjoyed a late summer slumber in the warmth of her SE facing bedroom, absorbing the sun and taking in the rest she deserved. I remember the nights spent in her bed with her, laughing and loving, falling asleep only to wake to that eastern sun holding one another without a worry. But here she was, up for what must have been some time as she brought me fresh blueberries from her mother’s garden and some fresh granola cereal to enjoy. She was taking care of me.
Nothing new happened today. A few more faces made appearances on my behalf and the flowers kept on coming. After the night prior I could not help but feel that everything was in its right place. Dr. Trubowitz surfaced in the early afternoon with a clipboard and a smile. She had asked to be alone with me for a few moments and I knew what was about to happen.
Before she proceeded to share the results, I asked for my parents to return to the room. I had been unfair to those closest to me. I remained stubborn and acted as if their worries were not my own, pushing them away when I needed them most. They needed me to need them, just once, since I had pushed them away for so long, hiding my thoughts, fears, and problems behind denial and self abuse, pushing the tough years away, only to realize that they were only going to get tougher.
Dr. Trubowitz laid it all out on the table. The tests came back and I had the “good cancer.” It was an episode of Curb Your Enthusiasm where Larry David argues that the cancer had by a colleague was the good kind, not the bad kind of Hodgkin’s. There are two types of Hodgkin’s Lymphoma. Non-Hodgkin’s and Hodgkin’s. Apparently the one without the non in front of it is the good kind, as backwards as it may seem.
I finally had a name for my disease and it felt good. I knew down to every last detail what was to occur over the next eight months. Chemo every two weeks, with follow-up CT and PET scans every three months, and then we would see how I was progressing. My first chemo was set to take place in a matter of hours. As slow as the events leading up to the determination of my disease, things followed smoothly and rapidly.
My first chemo treatment was strange. I sat in the same bed I had been sitting in for the course of the weekend as a semi-retired doctor entered the room with a basket full of poison. Katie sat next to me watching and asking questions, understanding what was going on more than I was. The first bag of poison lasted about an hour. The next two, much smaller bags disappeared in half the time, and the final injection was momentary. Steroids were given to me to offset the nausea and after a few short hours, I had experienced my first chemo treatment. This wasn’t going to be so bad after all. Was it?
On August 7, 2006 I was released from the hospital diagnosed with Hodgkin’s Lymphoma. I just went on a three-day rollercoaster ride without a safety harness. I knew I was sick but was not yet certain if I was going to live to see some of the things I have seen today. I was scared. I did not want to die. As strong as I thought I was over the course of the weekend. Looking at your surroundings can really make you irrelevant to the world.
Monday afternoon, as I packed my things and slowly made my way to the car, I just couldn’t keep it in any longer. I was in the car with my father, conversing without listening, just looking around at the things I have passed by for so many years without really knowing what it was I was seeing. A sad silence came upon us. I cannot imagine what my father was going through. His first-born son may or may not live to give him a grandchild or pass on the family name. We may not go to another concert or enjoy many more meals. We crossed the Glenn Jackson Bridge into Vancouver on a perfect summer day. The reflection of the sun sparkled on the Persian blue waters of the Columbia, sail boats afloat without the worry of disease or death.
The Marching Bands of Manhattan began playing on the radio. I turned the volume up and was lost in dreams of the afterlife, seeing all the things I never got see in life flash before my eyes. I saw my family, my wife, my kids, my future, and my friends. We were all happy and in love with life. It was on this two-mile stretch of bridge that I first felt that I was going to die. I heard the lyrics laid over the harmony of the song and the tears finally rolled down. I hid behind my sunglasses, staring out the window, wiping any sniffles away on my sleeve, and feeling a sense of reincarnation at the moment. This couldn’t be all life was going to give me. With the last words and the final touch of the piano, I felt an immediate warmth come over me. There was too much to live for. Fuck cancer and fuck this disease. Let’s dance. Keep it coming, I’m here to stay.
If I could open my arms
And span the length of the isle of Manhattan,
I’d bring it to where you are
Making a lake of the East River and Hudson
If I could open my mouth
Wide enough for a marching band to march out
They would make your name sing
And bend through alleys and bounce off all the buildings.
I wish we could open our eyes
To see in all directions at the same time
Oh what a beautiful view
If you were never aware of what was around you
And it is true what you said
That I live like a hermit in my own head
But when the sun shines again
I’ll pull the curtains and blinds to let the light in.
Sorrow drips into your heart through a pinhole
Just like a faucet that leaks and there is comfort in the sound
But while you debate half empty or half full
It slowly rises, your love is gonna drown
Your love is gonna drown
Your love is gonna…
Four days away from home does not usually feel like an extended amount of time unless you are in the hospital. At the time I was living with my father, continually making excuses as to why I could not get my life together, move out on my own, and finish school. Finally I had a legitimate excuse.
My father knows what a neat freak I am. That is most likely the case for him letting me live in his house for such an extended period of time upon my return home two winters prior. My parents were divorced and my father’s house occupied my brothers and a sister. We got along as well as a family could. I would be the dictator; making sure things were in order, organized, and in place at all times. Dirty dishes, overflowing trash cans, and excessive amounts of dirty laundry were unacceptable.
The summer after high school, just before moving to New York, Katie and I lived in Los Angeles at my grandmother’s house. Three days after graduation we packed a couple of bags and booked one-way tickets to live in the summer sun. My grandmother lived alone and would enjoy the company. We would sit poolside and drink all summer, capping off the evenings with great sex and sleeping in.
My grandma was such a cleaning whore that it rubbed off on me. Throwing my dirty clothes in a pile as I went to shower, I would come out and get ready for the day, leave and come back to freshly washed, pressed, and hung clothing in perfect order lining the dresser drawers and closet. The sheets of the bed would be perfectly folded over and tucked, the wheel lines from the vacuum would continually appear on the floor, and there was never a dish to be seen on the open counter. Pillows were in place, windows washed, frames set straight, and everything was always in order. This remains with me today.
Pulling into the driveway, I knew my father’s house would never be the same. I would associate endless nights of pain and would take the next eight months to move forward and create a better life for myself. Walking in, my step-mom and siblings had completely stripped the house down, dusting behind every last appliance and light bulb. The doctor warned of my incredibly weak immune system, and this was not to be taken lightly. Any sign of fever would warrant a trip to the emergency room. Any sign of cough or cold meant my blood counts were diminishing at a much quicker pace than anticipated. I had anti anxiety drugs to help me cope with these stressful situations, but all I could think about now was my hair.
It did not hit me until I got home that my hair would soon fall out. I had grown my hair to hang just below my shoulders. I had curly, healthy hair and took a couple of years to get it to the length it was now. The doctor said it would only be a matter of weeks before chunks started falling out.
The next morning I woke up feeling human. The fresh garden smell permeated through the room as the sound of early am sprinklers glazed the blades of grass just outside the open windows. Today was going to be a great day. Driving around Portland I ended up at Bishop’s Barber Shop in North Portland. I chose Bishop’s because they served free beer with your haircuts. My doctor told me to cut back on drinking, but she didn’t tell me to quit life. What I did not anticipate was how many times I would have to explain to strangers that I had cancer. Would I just make up a story, lie, or share the details of what I had just gone through.
Sitting in the barber’s chair, Miller High Life in hand, the barber asked why I was going to cut off such healthy long hair.
-I just had my first chemo treatment yesterday and the doctor said my hair would fall out.
Nothing really silences a stranger with something like cancer. As odd as it felt to share with an unknown face that I had cancer was not a joke, yet I found it funny. I always laughed at the reactions from others, but would follow with, “It’s okay, I’m fine.”
By continually repeating that I was okay, my mind continued to function as if nothing had been poisoning me. Friends and family would ask if I was okay and regardless of how I really felt, I would repeat, “I’m fine.” Although I felt fine, every two weeks I continued to feel worse.
After my second chemo treatment I remember showering and washing my hair. There is no way to describe the feeling of washing your hair and looking down to see your suds filled hands covered with hair. It was happening. The cancer was taking over. A shower meant for standing room only saw me curled in one corner under the rain spot head until the water turned cold. It was the first time I felt I was losing. I washed the hair off my hands and continued to wash away the short brown hairs that remained. About an hour later, back on my feet, I stood in front of the mirror. The color in my face had turned various shades of yellow and the whites of my eyes bore an eggshell tone. The increasing amount of bilirubin in my system cause the jaundice and the yellow against my impaled skin had me looking very ill. My hair was thinning but not gone, my eyebrows looked like thin penciled in lines that old women wrote in every morning, and oddly my weight was fluctuating in the opposite direction.
My appetite had become very odd and flavor was hard to come by. I had a routine. I felt that after chemotherapy I could treat myself to sweets and junk food. The metallic taste in my mouth was similar to that of smoking hash, but the feeling was of nausea and jitters. Not since my last chemo treatment have been able to enjoy a vanilla soy latte. The association with the unique flavor of soymilk mixed with vanilla and espresso send me into a whirlwind of fear and bad thoughts. I used to have one before treatment and after, just to prepare myself for the lack of food and then to mask the taste of toxins. Afterwards I would crave cheap Chinese food from Safeway.
One afternoon after chemo I was driving home and decided to stop at the Safeway in Jantzen Beach just before crossing into Washington. I do not recall what it was I stopped for, but walking by the deli I sampled some of the Chinese food. The sesame chicken was full of flavor and gave me a feeling of satisfaction I had yet to find in any other meal. So there it was. About three times a week I would eat a small box of sesame chicken from Safeway.
When Safeway was not around I would stop by McDonalds. Here I would order a long time favorite, the Filet-O-Fish sandwich. A greasy buttery bun with a fried piece of shitty fish in the middle topped with tartar sauce sent my taste buds into frenzy. My habits were awful, but I justified that I was going through chemo and I could do whatever the fuck I wanted to keep happy. My appetite would disappear for days and then come on full force. The only thing that would keep me happy was eating. I would eat and eat and eat, without exercise and continue to put on weight. My face was swollen, the jaundice was obvious and my treatments continued to wear me down.
Family and friends offered to give me rides or sit with me during my treatments, but time and time again I would push people away. My sister could come every now and then, and whenever Katie was in town, she was always allowed to sit next to me.
Every two weeks I went through the same routine. Having a routine, whether it was chemo and blood tests, followed by medication and shots, helped me develop a schedule. Before getting sick I would work whenever I showed up due to the flexibility of my schedule, allowing me to work till five showing up anytime before 1pm. If I wanted to go out the night before and get drunk I could. The pain in my back had me going out more often than not, spending any money I made on drinking and drugs. I had a pile of debt but no bills to pay at home. I could not save money and my life was driving downwards as the days passed. I would escape with late night benders on the streets of Portland, doing lines of cocaine in bar basements and feeling like the world was mine to own. I would drink heavily and push away friends. I would sleep with women and ignore my family. I always used the excuse of pain in my lower back.
Some mornings I would wake up, clothes on the floor, hair smelling like cigarettes, fast food containers on the table, and I would just start all over again. I would work a few hours here and there and nap after work only to do it all over again. The pain continued and that was when the summer months had me at home, without the desire to drink, do drugs, go out, or spend money. I was sick, but at least now I had a routine that was moving me in the right direction.
I continued to take classes at Clark College, maintaining my position as Editor-In-Chief on the school paper. I had fulfilled my maximum amount of credits but felt I needed to stay busy to take my mind off my cancer. The last semester there during the fall I chose to hold my position without actually registering for classes. I was not receiving any credits, just laying out pages, writing, and spending many hours in the newsroom. After hours of injections I would come here to put my baby to sleep. If I could maintain the responsibility of publishing a paper, I could slowly move into other, greater responsibilities.
The quarter ended and so did my run at Clark. My energy was diminishing and I was fading with the hopes of ever being able to live a normal life again. My strength was running out. There was no positive news coming my direction. The winter months approached and my health was fading. I fell ill and my lungs were failing me. One of the side effects of the treatment was the potential of permanent deterioration of the lungs. My lung capacity was fading, the chemo was working slower than expected, my blood count was low, and my soul was dying.
There was so much I could never have and it was rapidly coming into focus. I was now injecting myself with neupogen. The pamphlet and instructions read:
This medication stimulates the blood system (bone marrow) to make white blood cells, helping you fight infections. Neupogen is a man-made form of a protein that stimulates the growth of white blood cells in your body. White blood cells help your body fight against infection. Neupogen is used to treat neutropenia, a lack of certain white blood cells caused by cancer, bone marrow transplant, receiving chemotherapy, or by other conditions. This medication is given by injection usually once a day until the proper blood counts are reached. Dosage is based on your medical condition and response to therapy. Use the exact amount of drug prescribed by your doctor. Too little drug may not protect you against infections. Too much drug may cause your body to make too many white blood cells. Remove the medication from the refrigerator 30 minutes before you inject it to allow it to reach room temperature. Use this medication regularly in order to get the most benefit from it. To help you remember, use it at the same time each day. Choose a new injection site each time you give yourself a dose. This will help prevent soreness. Never inject filgrastim into skin that is tender, red, bruised, and hard or has scars or stretch marks.
This was not a very reassuring event I was looking forward to. My dad has been a Type 1 diabetic since he was five years old, so injecting myself would be no big deal right? The first night I was to inject myself I sat on the edge of the table, shorts rolled up, staring at my right thigh, needle in hand. My sister and I laughed, counting to three repeatedly, continually hesitating and failing to prick myself with the needle.
After about thirty minutes and my sister calling me a pussy I pushed the needle though my skin and pressed down, injecting the first of many painful doses. I grabbed the bag to examine the details of when I was to inject myself and noticed the price. I paid $5 for my prescription; the actual cost per shot was $285. What I came to notice with Kaiser prescriptions was that each bag shows you how much you saved by having Kaiser. I had my step mom to thank for this.
My father had met Cherry at my sibling’s school, the same school my sister and I attended, the same school I hope to send my children to one day. I have many memories from St. Joseph’s Catholic School. I am still in touch with more than a dozen of my middle school classmates, and I try to frequent the parish as often as possible. I do not believe in God.
Cherry was a charge nurse with Kaiser and had great benefits. My father and her had yet to marry, as far as I knew, but we all had great benefits. How was this possible? Well the two had gone to Vegas for a vacation one weekend and Cherry came back with a sparkling rock weighing down her ring finger. They passed it as a promise or engagement ring, but in actuality they were officially married, or at least domestic partners, which in turn granted all siblings insurance benefits until they turned 25. Without Cherry ever entering my life, I may not be here today.
I hadn’t any insurance for the two years prior to being diagnosed, and it was only months before my MRI that the benefits kicked in and allowed me to be treated without worry. My endless trips to the doctor added up regardless of how low my co-payments was, but with only working about 20 hours a week, my money did not go very far. I would not ask anyone to help me pay for my disease.
The little moments like these that made me appreciate how lucky I was continued to show up as the times got tougher. The neupogen was increasingly becoming more painful and my bones ached. The sight of the oncology ward at Kaiser was no longer an optimistic journey to my potential health, but rather a four-hour viewing of what death looks like.
The nurses are great about setting up the first few treatments in a private room with a bed and cable television. The time goes by much quicker and napping through chemo is the best way to ignore your surroundings. After those trial runs you are placed in a row of ducks. There is roughly 20 north facing chairs with IV machines and rolling drug tables looking out the second story window of the ward. Patients were placed where there was space. I was the youngest person in the ward by at least twenty years, looking down the row, it saddened me to think I had seen so fewer years than those around me. Can I get through this?
My veins were dying and the track marks on my arm had me wearing long sleeves to avoid the looks of passersby. My stubbornness continued and I vowed to only use my left arm for my treatments. It would remain strong and tolerate the poison for the eight-month challenge. After five months my arm could no longer take the pain. The chemo entered my blood stream and sent my dead cold veins up in flames, burning the insides of my arm, causing me to shed a few tears and loud curse words turning a few heads in my direction.
After the hours of pain endured, I made a decision. Fighting the disease may be the entirely wrong approach to take. After bandaging up my wounds I left the hospital that day with a new perspective; I went with it; I needed to change my ways.
The days got brighter and spring was approaching. The same trees that stood out the ward’s windows had lost their leaves and stood naked for yet another season. The leaves grew back slowly and before long, the views of buildings beyond disappeared and the bird reappeared, bringing back life to a place that had been dead for so long. With that new life came new results. I had accepted cancer and began living with it, not against it.
My relationship with the disease evolved. I began working out and planning for the future. My treatments became an event rather than chore, and the burses became my friends. I arrived with a smile and left giving thanks and praise for those that were working to save my life. People around me saw the transformation and life became much better. My CT and PET scans showed progress and my tumors were shrinking, disappearing, and going dormant. I began to take myself to fancy dinners and would spoil myself with a glass of wine. I met new people and shared my story. Venting helped. And then it happened; my last chemo treatment took place.
Eight months had gone by and I was still alive. Summer was now approaching and my mood was high along with my blood count. My spirits had gone in a new direction. There was nothing that could stop me. I was to go in for one last set of scans to make sure everything was okay and then it was just a matter of recovery time with bi-annual checkups. That’s it? If I could beat cancer, certainly I could accomplish all the things I worried would never be attained just a summer ago.
My scans came quickly. I had a PET scan in the morning, followed by a CT scan the same day. I wanted to be done. I scheduled a doctor’s visit for just a few short days after, and I was ready to be set free. Sitting back in Dr. Trubowitz office, I waited patiently, tapping my right foot, flipping through magazines, unaware of what I was really doing. Dr. Trubowitz entered with the same smile she always entered with. She gave me a hug, asked how I was feeling, and sat down. The smile disappeared quicker than usual.
My test results looked good but not great. There was still a section that showed a large mass in the same spot they had once removed the cluster of grapes on the right side of my neck. I had heard the words ‘bone marrow transplant,’ but not in a way that would directly affect me. While the remaining mass has not grown, it had not disappeared and this worried Dr. Trubowitz. My orders were to go enjoy the summer. She suggested I travel, visit friends and family, and enjoy being a kid. How the fuck do you enjoy a summer knowing you may need a bone marrow transplant?
I was to come back at the end of the summer for one last scan to finalize and reassure her that the mass was still there and that a bone marrow transplant would truly be in store. I was instantly knocked back down. I fell further than the moment I was told I had cancer. Fighting a battle for eight months, the pain for much longer, and suddenly being told that you have only made a dent is a very discouraging thing to hear.
I left the hospital, had a vanilla soy latte, a Filet-O-Fish, and went home to sleep for two days. I cried and fell ill. The sunny summer skies were as dismal as they were the summer before lying in the hospital bed. My illness turned into a bronchial infection and the doctor did not hold back. She gave me liquid vicodin that would ease the pain in my chest and essentially get me high. I remember the first time I took my prescription I just stared at the ceiling, counting the dots, analyzing pointless things around me. How many books are on the shelf? Why do I have five pillows? What was the name of my first grade teacher? When the high wore off I took more medicine. I took the medicine even when the medicine was not needed. I was depressed and the only thing that made me feel better was this liquid opiate.
As the summer went on I continued to email my doctor for refills of this liquid dream drug. I planned a trip to Chicago and saved a couple of bottles to make the adventure to this new city much more hazy and enjoyable. It was early August and I was heading to the Lollapalooza music festival in downtown Chicago. I rented a condo on the 32nd floor of a high-rise building next to the Sears Tower. This south-facing unit looked over the grid that was Chicago. Daniel Burnham’s plan extended in all directions. The weekend would have me at the festival for three days, Wrigley field for a Cubs game, and at a number of clubs and bars into the early hours of the morning partying with the 75,000 others that venture to the Paris on the Prairie. I had my legally prescribed paradise poison and this new city was mine. The early August sun cast a haze of Chicago full of moisture and humidity. My drugs kept me cool and I hovered above the city for five days. I would approach the balcony each evening looking down at the small city streets. I wanted to take my life. If only I could drink a little bit more and force myself to sit on the rails edge, it would seem like an accident. I would leave no note and I would not have to try to crawl my way back up from the bottom of this ditch I had put myself in. For hours I would sit leaning against the rail, visualizing my bloody body at the alleys end. The weekend brought few patrons to the side street next to the high-rise, and it would surely be a few days before my body was discovered; but I would never know.
I made it through my vacation, waiting at Midway airport to board my plane. I was again tempted to hop a plane to a far away land to escape what awaited me back home. Maybe my plane would crash somewhere over the Midwest. The possibility of water landing was less than likely and I would be revered as the kid, friend, brother, and son that fought so hard only to be taken by an engine malfunction sending me to a 32,000 ft plunge. This certainly sounded much better than a 32-story one.
Coming back to reality, my final scans were only a few weeks away. I worked full weeks to keep my mind occupied and slept as often as possible to make the time go by quicker. Summer ended now it was matter of hearing from my doctor and scheduling the scans. Dr. Trubowitz just had her first child so my anxiety continued for another month. It was not until late August that I was scheduled for my last round of scans. Sure enough the results were the same. The tumors around my body had disappeared or gone dormant, while this one mass remained its same size over the course of a year, living in my neck, resting on my collarbone.
It was time. I had a lymph node biopsy scheduled for late September. They were going to cut me open again and test the sample to see how bad it was and order the bone marrow transplant.
Over the next few weeks I read up on autologous bone marrow transplants. I took a field trip to OHSU to visit with the bone marrow doctors and those that would be conducting my transplant. They were not ready for me. Their faces and demeanor remained serious as I tried to poke fun the way I would with Dr. Trubowitz. I had done my research so the news they shared came of no surprise to me, causing them to be a little offended that I was taking such a serious matter so casually. I finally said to the doctor and the nurse, “Look, I know what is going to happen and I know there is nothing I can do about this situation.”
The two just remained silent.
“I sure as shit don’t want to be cooped up in this depressing fucking place, and I certainly don’t want you to fucking baby me…just tell me how it is.”
The two looked at one another and then struggled to find their words. After a few long seconds the doctor continued on in a more light-hearted approach, telling me real numbers, real facts, and describing the real pain and difficulties. Now it was real. I left with a handful of books to read and flyers for support groups. I kept the books and discarded the flyers on the tram ride back down to my car. This was the first and last time I would ever visit OHSU.
The week that followed my lymph node biopsy was scheduled to take place at Southwest Washington Medical Center. This was the same place that Dr. Kid got a taste of who I was and the last place I wanted to be. My mindset was completely wrong going into the procedure and it showed from the get go. I was rude to the nurses, demanded unnecessary needs such as new scrubs and a better room, and my dad continually apologized for me, holding onto a smile, as if it was just the situation. Of course it was the fucking situation. I was getting cut open again so the doctors could examine my lymph nodes, only to follow up with the scheduling of a bone marrow transplant. I certainly did not want to go back to OHSU to harvest my own cells only to have them painfully inject it into me in hopes that it may eliminate any remaining cancer in my body.
The hospital was running about an hour behind and I was pissed. I was cursing and making the nurse feel like shit. Was it her fault? No, but who the fuck cares? At the time I was house sitting down on the Columbia River. After my surgery I had three weeks to recover from the stresses and pain that would come with the anxiety of knowing it was certainly a possibility now that I could die in the next year. The summer weather carried into the fall, having me enjoy the river view home in a peaceful state of mind.
Breakfast was made every morning along with a pot of coffee. I would enjoy my meal on the back deck overlooking the water listening to the passing planes and trains. Afterwards I may fall back asleep into the early hours of the afternoon or watch porn and jerk off. Either or it was a win-win situation and I did not care. What happened next changed my life forever. I opened my email inbox to see that I had a new message from Kaiser Permanente. After logging into my account I clicked on the one new message that was from Dr. Trubowitz’ office. There was a number and a message stating that there was something important to be discussed. I waited to pick up the phone. I did not need more bad news.
After about an hour or so I picked up the receiver and phoned the doctor’s office. Dr. Trubowitz answered and I was surprised to hear her voice. This was her direct number, and it was evident that she needed to communicate with me.
I did not have cancer and I did not need a bone marrow transplant. What?
Dr. Trubowitz went on to explain that after testing my lymph nodes, the mass that was appearing time and time again on my scans was just some sort of deposit left over from the first surgery now over a year ago. After sifting through the excess material it was clear that the tumor had been shrinking the entire time and I was healthy. I was officially in remission. I kept this news a secret for some time in case they had made a mistake over at Kaiser. If they could make a mistake and be this close to sending me up to OHSU for a bone marrow transplant, who’s to say they couldn’t have fucked this up? I was alive again.
The seasons changed again and my life followed. My hair grew back and my jaundice disappeared. The whites of my eyes returned and my energy was through the roof. I smiled at strangers and called old friends. It was time to do something in my life. A God, not my God, some power greater than my own, gave me another chance.