Tag Archives: Cancer

Little Boxes

Little Boxes
The summer months moved along awfully slow.  In fact, every hour of every day seemed to have no end.  My sleep was little and my pain was great.  The tears rolled down my face each night as I searched for a moment of comfort and relief; they were far and few between.  The pain I felt was one of which I would not wish upon my worst enemy, in this case myself.
I first felt the pain on Sunday, May 29, 2005.  I sat in the front seat of my father’s forest green Jetta and stared at across the Columbia River.  The River stared back but said nothing.  The Bridge of the Gods sent a whisper through the wind that entered the car and shook me cold.  I felt a bite to my lower back and right hip; I shook it off by demonstrating minor discomfort.  This had to be a result of sleeping in a field the night prior.
The Sasquatch Music Festival was an event I tried to be part of as often as possible.  Usually held around Memorial Day weekend, the industry’s latest greatest indie rock bands arrived to George, WA to play what has become one of America’s most treasured venues, the Gorge Amphitheater.  Settled above the banks of the Columbia, thousand of people came each year to indulge, imbibe, and get away from the little boxes.
The years I attended, a trip to Seattle was always in store pre-festivities.  My old childhood friend and I would collect some liquor, bags of drugs, pack up the car, and anticipate a memorable weekend that we would talk of for years to come.
In 2003, my friend was still at the University of Washington.  A quick trip up the corridor put me in Seattle with just enough time to stockpile a weekend of fun.  After a nap of a few hours, we woke in the dorm room, packed our bags, and thought for good measure, we might as well two a couple bumps of cocaine since we had a long drive ahead of us and no coffee; a sound justification at the time.
This year we had moved the party up a few hours by splitting a double stack ecstasy pill the night before.  We danced on the rooftops of Seattle and shot the moon with our thoughts.  We owned the night.  It was what we did.
The festival was no different.  We set up camp in the heat of the early afternoon sun.  Some cocktails and victuals were in store; God forbid you drink and drug yourself on an empty stomach.  We had no reason to split a pill this time, we were about to party with rock stars for ten hours; party we did.  Falling asleep in a tent that rest on an uneven field of long grass was surely why my back gave me so much discomfort.
The rest of the year passed.  My daily run turned into a daily bike ride.  The pain from running was unbearable.  Every now and then I would feel cured and kick a soccer ball around with friends, but that only lasted moments of every month that came.  My justification and blame for back pain soon left central Washington and became much more immediate.  I was without a car and thought I would better myself by riding my bike to and from.  I had a decent road bike that always showed me a great time.  I dedicated myself to riding, rain or shine.  Occasionally I would negotiate a ride, but for the most part I was riding a few miles to school and then an additional nine miles to work across the river.  My back was becoming incredibly sore; it must certainly be all the riding.
X-rays and physical therapy all blamed my lack of flexibility for back problems.
“You have to do these stretches for an hour each day,” the therapist would bark.  “The pain in your lower back is caused by the tightness in your hamstrings and gloots.”
I continued the stretching, the riding, and the pain.  I was losing weight and satisfied with my results.  The bike riding, though painful, was paying off.
“If I am losing all this weight and becoming much more flexible, why does this pain in my back keep getting worse?”
2006 finally came.  I was working as editor-in-chief for the Clark College student newspaper to keep fresh on my practice of journalism. This was merely a hobby and a social experiment.  I attended Hofstra University in Long Island, New York University in Manhattan, lived in Costa Rica, traveled the world, and had a number of memories to make this time redeemable.  I did not have control of my pain and therefore had no control of my life.  This newspaper gig gave me a bit of much needed control that was so desperately needed.  I could no longer earn any transferrable college credit, but the job paid and allowed me to write, design, and edit, but most importantly, take my mind off the pain that was worsening with each passing day.
It soon turned to be that the only comfort I found was on my bike.  Being outstretched and hovering over the white frame of my bike gave me a feeling I only used to know so well; what I would do to have that feeling come back for good.  The winter and spring quarters passed and I lost of all of what little control I had.  I continued to visit the doctor and continued to hear the same fucking bullshit.  What was happening to me?  Nothing could help the pain.  Neither whiskey nor pills could alleviate me from the vise that was on my spinal cord.  Sleep was now unknown.
When I did sleep I would shiver and sweat as if possessed by an internal demon.  I would be too cold to grab another blanket and so tense I feared breathing.  I would wake up soaking wet and confused with what was fiction and what was reality.  Did I just feel those demons or was it all a dream?  Was I sweating from nightmares or did I have a fever?  I spent many nights in the bathroom, sitting on porcelain, lost in auburn squares of tile trying to find answers.  I would not be able to pass a bowel movement and urination felt like rain trying to make its way through a leaf filled gutter.   There was no pain, just no satisfaction.
I would return to bed in agony, tears of frustration rolling down my face.  Piling a mountain of pillows and blankets onto my bed may look odd to the outsider.  I would lay face down on top of this mountain, ass in air, and find some rest in this awkward position.  It was the only way I could have some piece of mind.  It was mid-July and I hadn’t slept more than two hours without interruption since early spring.  I had no motivation and no thoughts on life.  I wanted no more of what I was feeling.  Suicide was never a realistic idea, but the thought of being better off dead certainly crossed my mind.  I would just sit on the recliner and watch endless episodes of sportscenter.  Eventually I would doze off only to find myself in this angered state of sadness and bemoaning.  Life was passing me by and I did not care.
August was approaching and I had had it.  I approached my boss and asked for two weeks off to see if I could heel my back from any pain.  Kaiser finally schedule me for an MRI since I filed a workman’s compensation claim, again thinking the pain was coming from an event at work.  I primarily did this to earn some benefits of seeing doctor’s without having to pay out of pocket, seeing as it may truly have occurred at work.  My boss gladly gave me the two weeks and immediately I felt the pain ease.
This is what I needed; a much-needed break to relax, enjoy the hot August sun, and hopefully get some rest.  The MRI was scheduled for Friday, August 4, 2006.  My father was going to drive me; that was how bad the pain had become.  I had trouble getting in out of the car, up and down the stairs, and certainly into a fucking tube for an hour at 7:30 in the God damn morning.
I did not really wake up early that morning, rather just waited for the sun to come up so I could start a new day.  Sleep had long since disappeared.  I slipped on some baby blue scrubs that my step-mom had brought home from work.  She was a nurse at Kaiser and just happened to have picked up a shift at the Salmon Creek location where my MRI was scheduled.  I through on a t-shirt, pulled a black hooded sweatshirt over my head, slipped on a black pair of Crocs, grabbed my Dodger’s cap, and wobbled to the car.  All I could think of was the French toast and sausage I was going to eat after the MRI.  My father and I did not speak of much on the way to the hospital.  We discussed the potential results and the worst-case scenarios.  At this point, the worst-case scenario would have been the best possible outcome compared to the news I was to hear in a matter of hours.
Arriving at the hospital, I checked in and followed the doctor back to the MRI screening room.  I made my way to the table and rested on my back.  Trying to find a position of comfort was damn near impossible.  Trying to find a position of comfort for an hour was a fucking impossibility.  I had to put a pillow behind my knees and out stretch my arms over my head.  I knew the pain was coming and just had to fucking deal with it.
The tube seemed to get smaller as I inched my way in.  My saving grace was the window just beyond the end of the tunnel.  If I pushed my eyes to the top of my skull I could see the sky blue sky and the branches of a tree waving in the wind.  The sunlight would break through the branches and smile at me, telling me everything would be ok.
The MRI finally ended and I made my way out to the lobby where my father patiently awaited.  The gentleman who conducted the scan smiled, shook my hand, and told me he would be back in a matter of moments with a scheduled follow-up doctor’s appointment.  I wanted some mutherfucking French toast!  A short while passed and the gentleman returned.  He told me that there was a doctor waiting to see me upstairs.  This was great.  I had a scan and would be seen that same day to figure out what was causing me this grand discomfort.
I walked up the stairs and checked into module A.  Here I waited amongst noise.  Although I was nervous to find out the results of my suffering, I was anxious to get this problem resolved.  The nurse called my name.  I made my way down the hall and passed my step mom along the way.  She offered a smile and told me everything was going to be ok; she had the same tone the sun had.
I sat on the table and waited for the doctor.  I never could stand that fucking paper they laid across the examining table.  It always made me angry.  A five-foot nothing man from Vietnam walked into the room.  His coke bottle glasses and side part suited his white coat.  He looked like he came from a family that had nothing. He looked like he made his way through medical school and residency on the thoughts of his parents back home.  He knew they wanted nothing more than for him to have a better life than they could give him; he would never forget that.
His name was Doctor Vu V. Ngo.  He had broken English and wore a smile.  He brought up my results on the computer and asked me a few questions.  He typed away without ever looking at me.  When he finished questioning me he continued to fill out some notes and casually proceeded to tell me I had cancer.  What I felt at that moment is something I hope to never feel again.  I died.
There wasn’t going to be any French toast today.
I sat there and looked at this guy as if he were a heartless, soulless, piece of shit immigrant that I wanted to fucking choke and slam on the ground.  That lasted for about 3 seconds.  He then looked at me and asked if I was ok.  Oddly I was.  I was reborn.

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‘Til Death Do Us Part

Next Thursday at 7 a.m., I will be dressed in scrubs, stuffed into a tube, trying to stay still with my arms outstretched over my head for 45 minutes, as a machine takes a look at my lymph nodes.  I don’t speak of this all that often, but my doctor suggests the ventilation of anxiety and thoughts may help clear my mind; I think she is full of shit and has nothing else to offer me but anti-anxiety drugs that make me drowsy.  She means well though, and I wouldnt be here without her. Thanks Dr. Trubowitz.

It is weird who you share these things with.  I am making this public by posting it on a blog, but who reads these things anyway?  I hope someone going through the same situation happens to stumble upon this, giving me their routine and rituals.  It is so hard.

I went out to catch up with a friend last week.  We had been meaning to catch up for some time and had just been in the wrong place at the wrong time.  I was excited to talk to this person, share life experiences, and what was happening with one another in our paths of existence.  Although I dont know this person all that well, there is a sense of security, allowing yourself to say things to someone who is willing to listen.  Old friends and family members listen, but always feel that they have to say something afterward, usually resulting in an awkward conversation, or an accidental inappropriateness that leaves them uncomfortable.  It is nice when someone just listens, knowing that you just have something to say.  It was here that I just said, “I don’t know if I can do it all over again.”

It comes down to the fact of being uncertain I could tolerate treatment a second time.  The luxury of being lined up in a row next to sick patients plugged into machines absorbing bags of poison is one thing;  bed ridden, counting on your own bone marrow to work an autologous miracle for you is another.

Life has been treating me well and my momentum is carrying me in the right direction.  It took everything in me to get rolling and moitivated to push through the first time around.  My family and friends were there, but I kept them hovering above the surface, hiding my fright and weakness during 8 months of chemo.  Part of my insecurity and stubborness is terrifeied to be out of control, unable to enjoy this beautiful ride we are on.  What I am most afraid of is not accomplishing all the things I have longed for.  I want to be here and I want to be there.  I want to see this place, dine here, hold her hand, hold my child, remodel my kitchen, take him to his first day of school, scrapbook first, second, and third birthdays, stay up all night with a sick and helpless infant that cant communicate, and grow old with my best friends.  I have tried to pretend that death doesnt scare me, but every time I get ready for a scan, the thought fucking terrifies me.

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The Day I Cried

On August 7, 2006 I was released from the hospital diagnosed with Hodgkin’s Lymphoma.  Some call itthe good cancer, and Curb Your Enthusiasm has a great episode about this.  I just went on a three day rollercoaster ride without a safety harness.  I knew I was sick but was not yetcertain 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.

So many thoughts entered my head that weekend.  I laid awake at night with my headphones on listening to the saddest songs I knew, trying to let go, letting my guard down, craving a moist pillowcase from a shower of tears.  I could not let go.  What was I afraid of?  Was I scared to show weakness to those around me?  I just wanted to cry and feel human.

Monday afternoon, as I packed my things and slowly made my way to the car, I just couldnt keep it in any longer.  I was in the car with my dad, 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 dad 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 strecth 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 couldnt 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, Im 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…

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A World That’s Not So Bad

This post was going to be part of the Top 10 Concert list that is coming, but I thought that it deserved it’s own.  There are a handful of songs that come to my mind when I think of my favorites of all time.  On that list is Radiohead’s Blow Out off of Pablo Honey, Losing My Religion by R.E.M., Trucker Atlas by Modest Mouse, Hey Jude by The Beatles, and Velvet Waltz by Built to Spill.  

Built to Spill continually grew on me over the years.  It started with Carry The Zero back in high school. They had been around for years, but my knowledge of music was slowly growing and I was far behind. The first tme I saw the band was in Long Beach, CA at the ATP Festival.  Spoon, Modest Mouse, Iggy and The Stooges, The Shins, Mars Volta, !!!, Sonic Youth, Cat Power, Mission of Burma,and scheduled to perform, Elliot Smith.  He sadly stabbed himself weeks earlier.

This was the same show that I danced, drank, and made out with Anna, the exotic curly-haired blonde whose journal I wrote in.  I almost missed the show thanks to the week’s prior events.  Halloween in San Francisco kicked my ass.  I was ill for a week and told Sam I would not be able to make the festival.  I rallied and we took the old BMW down to the Queen Mary for some partying.

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As the years continued I tried to see Built to Spill when I could, but I was still a fan of their so-called hits, not a dedicated BTS fan of old.  I followed my love for guitar an kept showing up to their shows.  The more I playe guitar the more I wanted to see the band play.  There is something to be said for 3 guys making 18 strings sound so good together.  They were flawless.  

Whenever they came to Portland we were fortunate enough to have a two night stand from the band at the Crystal Ballroom.  I smoked and listened, imbibed and listened, drugs and listened, and soberly enjoyed their music.  I mixed it up, but as far as the music goes, I always wanted the same thing.  Then I saw them at The Independent on Septembe 19, 2007.  They were playing a small club show before their set the following day at Treasure Island.  I knew that they were only allotted 55 minutes at the fest so I had to take advantage seeing them perform for two hours in the city.

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Sam and I struggled for tickets to the show.  I had found one on craigslist but Sam was still seeking her golden ticket.  We had faith and took are chances, showing up to The Independent minutes before the opening band played to score our second admission.  We headed down Divisadero to grab some beers and made a quick stop at Popeye’s to soak up some of the liquor we had been consuming.

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I ran into Doug before the show and told him I would move to Boise if they played ‘Life’s a Dream.’  They did, but maybe they already had their setlist drawn up. Now this wasnt Built To Spill’s most amazing setlist, but it exposed me to the song Velvet Waltz.  The set started slow with Liar, Source, and Time Trap.  Velvet Waltz started and I swayed side to side for the first few minutes enjoying the lyrics.  It was about four minutes into the song that I experienced something that has only happened twice before at a show, I touched my face, mouth agape, anticipating a life changing moment.  It was about a minute later it all happened.

The five-piece from Boise became an orchestra conducted by my imagination.  Everything I wanted to hear was heard.  When I wanted a fill on the drums it was filled.  When a chord progression needed to match the bass players rhythm it followed, when the overdrive and reverb needed to form a layer for a guitar solo, it was perfectly laid out.  I was still.   

As the song came to an end I could not help but ask Sam if she just saw what happened?  I couldnt believe it myself and had to be reassured that what I saw was not all a dream.  My life just got better.

Since that night I live for the live performance of the song.  I continue to see Radiohead, but I know that they havent played Blowout since July 2, 1997, so the odds of seeing it live may never happen in my lifetime. Trucker Atlas is almost as rare.  Hey Jude will not be the same without the full band, although a young Japanese kid does a great performance of it, and Losing My Religion is within my sights as long as MIchael Stipe keeps touring.  

I left San Francisco with a greater appreciation for life and music.  I remember leaving Sams and taking the MUNI to connect to the BART.  On my way to SFO I must have listened to the track six times.  I was lucky enough to have had my Bose headphones, allowing me to capture almost every detail of the live performance.  That song pushed my mind and willpower.  I made it my daily soundtrack and it helped me become stronger when times were tough.  By tough I mean I was due for a bone marrow transplant within the month, and San Fran was my last hoorah before heading up to OHSU for an autologous bone marrow operation that may have taken my life, but more importantly, my soul.

I remember hearing the news from my doctor and playing this song.  I was house sitting and I began to cry because it was the happiest I had been since I heard this song in San Francisco.  

Four months later I had the chance to thank Doug Martsch personally.  It was night two of their shows at The Fillmore.  Again I wass in San Francisco and I was having the time of my life.  Sam opted not to go the second show and I was left alone in an attempt to do something that some might find strange.  I listened and loved the show.  I had come to know that after the shows the band will sign LPs and give fans a moment to chat and maybe snap a photo.  I waited for many fans to say their his and byes, have shirts and posters signed, and an occasional photo with Dug.  I chatted with Bret who I had become familiar with from prior shows and we laughed about stupid fans.  The Fillmore was near empty and there was only one person left that wanted to speak with Doug Martsch.  After he left I asked Doug if I could talk to him for a minute.  He didnt hesitate to say yes and I explained my disease and what I had endured the last two years.  I wrapped it up by thanking him for his music and what he meant as a musician.  I described my chemo treatments and the meaning I found in his songs.  He had a happy look of sadness  and gave me a hug.  I took a photo with him and he told me to go live my life.  To this day he still asks about my health when I see him at shows.  That is why Built to Spill is my favorite band.

Earlier this summer the band had announced that they were going to tour and perform their 1997 masterpiece, Perfect From Now On at the ATP Festival in New York.  It wasn’t long after that they announced a tour, and it wasn’t til a month prior to MFNW that they were added to play the Wonder Ballroom.  

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Velvet Waltz came halfway through their set and sent me back to Divisadero.  I knew as soon as they finished I had to see it again in Eugene the following night.  I said hi to Brett after the show and Dug saved me from being kicked out by an asshole security guard.  This dickless fuck was yelling at me as I was waiting.  He wanted me to leave a near empty building.  As he started yelling I told him I was waiting and he began cursing.  That’s when he tried forcing myself and Calvin Johnson out of the building before DOug told him we were with him.  This asshole rent-a-cop felt like the worthless fuck that he was and walked away.  Dug asked about my health and was glad I could make it.  I told him I was considering the Eugene show and he took out a marker and wrote my name down on his pack of gum +4, so I would be on their guest list.  

Eugene was the same set at much smaller, less crowded venue.  When Velvet Waltz was on deck I noticed the guy next to me got his camera out.  He filmed the entire song, and all I could think was, “God I want a copy of that.”  Well it was just a few weeks ago, after continuously searching Velvet Waltz on youtube, that it finally appeared.  Here is Built to Spill’s Velvet Waltz, live at the McDonald Theater in Eugene on September 6, 2008.  Enjoy.

 

if there’s a word for you
it doesn’t mean anything
I’ve got some words for you
they don’t offer anything
you cold called everybody
but you haven’t sold a thing
a bad idea gone funny
a pinch felt in a dream
you thought of everything but some things can’t be thought
you thought of everything but one thing you forgot is you’re wrong 

and you better not be angry
and you better not be sad
you better just enjoy the luxury of sympathy
if that’s a luxury you have
and you know no private bad
you know that that’s the meaning of you’re done
in a world that’s not so bad
in a world time was killing in the sun
in a world that’s not so bad
in a world time was killing in the sun
in the sun
in the sun
you took all that moment
and you kept it in the sun
now it’s gone because you left it in the sun
was a brave idea
didn’t mean no harm
now it’s burnt because you left it in the sun
was a grave mistake
but how could you have known
the temperature, the distance of the sun

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