Life? Or Theater?

One of my favorite artists, Charlotte Salomon, posed this question: is it life? Or is it theater?  She made around 800 small gouache paintings depicting her tragic life and secured it in a book.

In 2007, I visited Amsterdam.  I was traveling by myself and staying in a hostel.  It was cheap and clean and cramped.  I shared a bunk bed in a room the size of a large closet with 2 additional bunk beds.  I was the only American and, surprisingly, the oldest traveler.  There was the lone ginger-headed and cheerful Aussie teen girl who slept on the bottom bunk.  There were the Aussie brother and sister sharing another bunk and a young English couple who tittered when I said “cell phone” rather than “mobile”.  Behind their backs, the Aussies called them “the Limeys” in a way that seemed almost affectionate rather than derogatory. 

Charlotte Salomon’s precious book is held in the Jewish Historical Museum in Amsterdam.  When I made my plans to go to Amsterdam, this was one place I had to go.

My hostel was farther into the city and it took 2 zones worth of strippenkart to get to the museum, only to walk a few blocks and find the building composed of multiple old synagogues.  After searching through the religious artifacts, that were symbolic that they survived the Holocaust, I found no sign of Life? Or Theater?

It was only a glance in a corner when I came to the realization that the exhibition was going through remodeling and the book was not in fact on display.  I took a step beyond a velvet rope in hopes to sneak a glance at the book.  I longed to experience its momentum through its mass and size.

It was not there.

Instead an empty glass case only hinted at its former occupant. 

I suppose I could have spoken up and pleaded and asked the museum staff if I could see the paintings since I had come so far to visit it.  But I didn’t.

I picked up a CD of its digitized images in the gift shop.  The middle-aged woman who worked at the gift shop was intrigued by my presence and I could feel her gaze on my back as I looked at postcards: we rarely see young people here.  Even when paying for a bookmark and the CD, I could tell she wasn’t sure what language to speak.  Dutch? Hebrew? English?  She smiled kindly to me when I spoke English, as I only knew a handful of basic Dutch formalities, my Hebrew non-existent.

When I left the museum, I had a tiny bit of disappointment.  I didn’t get to see the famous piece that resonated with me.  I traveled over 5000 miles to see a piece of art that wasn’t there.

In its own trickery and timing, something surfaced within me.  I felt the elusive quality of life’s events.  This was a taste.  A tease. 

Sometimes things just don’t work out.  Sometimes things just don’t make sense.

I ask myself everyday though, not necessarily intending to receive an answer: so what is it then? Is it life? Or is it theater?

Postscript: on this same trip, the Rijksmuseum was also going through remodeling, so I saw little of that one too.  However, the Anne Frank House and the Van Gogh Museum were awe-inspiring.  I also found out recently that the Dutch no longer use strippenkart to take the tram.  It was basically a line of skinny perforated tickets that got stamped with times and then torn off when expired.  It seemed a bit old-fashioned at the time, but now knowing I have unused tickets hiding somewhere in my belongings makes me feel like I have a piece of something historic.

Quitter

They say a sign of maturity is when you understand your limitations and follow them.

I have had a humbling Spring to say the least.

I am already all too aware that my body is still in post-treatment flux and is continually evolving to a better state of health.  This evolution, however, is taking its time.  It feels that when I look back to my early 20s, it was decades ago, that I’m looking across a giant bridge at myself on the other side.  I feel aged by circumstance.  Fences run around my once-boundless energy.  I turn a corner to pick up some speed and deter it, but there it is, yet another wall.   

Post-treatment fatigue and joint pain has caused much alarm and frustration for me in the past few months.  When I brought these issues up to my oncologist during one of my follow up appointments last month, he said it might be depression.  Determined to prove him wrong, I began systematically removing items out of my diet that could be the source of the fatigue and pain.

I have quit eating wheat and dairy.  I have quit drinking coffee.  Ok, ok, I haven’t perfected these pristine dietary standards, but for the most part, I’ve been a good girl.  You might think I dove into the sea of the silly.  In reality, desperate times call for desperate desperateness. 

I’m surprised to say that a diet with lean meat and lots of vegetables seems to be the best for me thus far.  Green juice has made its way back to my normal routine.  Part of the annoyance factor is the awareness about the dark sides of the food industry.  It is part government agriculture subsidies, part chemical manufacturing, part marketing and advertising. 

This awareness ties back to the mystery surrounding my initial diagnosis.  It is like everything is bad for you.  Anything can cause cancer.  Better yet, anything can prevent cancer.  To come up with an informed decision is impossible.  Everything contradicts everything else.

Worse still, this cynicism is leaking into other parts of my life. 

Don’t get me wrong, there is more Pollyanna than not within me.  It’s just that my tolerance for bullshit is getting smaller by the day.  Then again, I can be extraordinarily patient with other people, but not with myself.  This, of course, has negative repercussions.

After nearly a year of dealing with school woes: financial aid, student status, withdrawing from classes, registration, getting this and that approved, waiting for replies from the Graduate School and the College of Information about my future graduate career, I’ve come to a significant conclusion:

I’m exhausted.

I’m also exactly where I wanted to be with or without school: I have a job with benefits that can cover my formerly cancer-ridden ass (or should I say lung?) and any potential shenanigans that might ensue.  I have a 401(k) and paid vacation.  I like my coworkers and workplace.

All in all, I’ve become the responsible grown-up despite my cancer-ness.

So, why do I need to pile any additional stress? 

I left work a tiny bit earlier Monday thinking I’d get home early and help my family prepare dinner.  I ended up arriving exactly when I would get there if I hadn’t left early because of an accident on the main highway to my home.

No lies I hate traffic.  I even took off my work shoes while stopped on I-35 and fished some flip-flops out of the backseat.  I had that much time and inclination to get home and be comfortable.

I also had enough time to come to a realization.  If I sit in congested traffic to get home, it is more infuriating than taking the side streets, which may be longer but keep me moving. 

Thus, why the hell am I putting myself in congested traffic when all I need is to take the long way on the side streets?

Upon arriving home grumpy and tired, I knew my decision to stop graduate school was made.

At this point, I don’t know if it will be a permanent or temporary hiatus.  I don’t know if I will stay in librarianship, even though it is dear to my heart.  I don’t know if I’ll return to UNT.

Decisions, decisions…

…for another day.

A year in review.

I have started and stopped many blog posts since I last wrote.  Nothing quite stuck.  Nothing quite seemed right.

It has almost been a year since my cancer diagnosis. 

There are so many fragments in my memories from this past year.  Some things stand out more than others.  You’d think it is the terrible procedures, treatments, and surgeries I had to experience.

More often, to be honest, I reflect more on the events aside from those.

I am all too aware that I fall back onto my snarky and sarcastic sense of humor.  It’s a defense mechanism that conceals a great deal of hurt, but it has helped ease the blow.  I still swing it over my shoulders and carry it with me day to day. 

I’m surprised almost daily to come across other survivors and friends and family members of survivors.  It’s a bit like joining a club where its members only understand the lingo. 

There is a bittersweet irony of cancer survival.  Yes, my treatment is over and I happy dance over this.  However, I am all too aware of the potentially rocky future I face after the fact. 

There is a fine line between living for the moment and living to preserve one’s self.  Where does spontaneity and relishing the small things fit in?  Do I think for now?  Or do I think for the future?  Is it possible to balance both? 

I have a more formal sense of survival.  Survival not only in health, but also as a global citizen, as an adult, as a perpetual student of life. 

It’s so easy to view the world as cruel, but it is defeatist and all encompassing.  If darkness is the night sky we see, then the moments of clarity, love, and positive thoughts are the stars that punctuate it.  They might seem small and insignificant, but they are everywhere.

I thank my lucky stars each day for the awareness I’ve been granted despite it all.

Abstract Realism

During the actual radiation, I don’t see anything.  I sorta feel it.  I was told I wouldn’t, but I’m not entirely sure I agree.  Sometimes I swear I smell the scent of burnt popcorn.  I wonder if it’s the tissue in my chest burning. 

I figure the interstellar space around my Deathstar is littered with radioactive poison and remnants of cells.  I imagine them floating like sparkly dust particles in my body.  I wish my brain would allow me to go inside myself and see everything microscopically.  I’m unsure of what it truly looks like in there.  Aside from the initial x-ray with the looming mass overtaking my left lung, I don’t have a good picture in my head of it all.  Perhaps this could be remedied.  My squeamishness has flown out the window after this past year.  I might not enjoy having blood siphoned out of my port for example, but by God, if it necessary, I will just friggin’ deal with it.  Surely looking at photos of my insides won’t incite any additional paranoia.

During radiation, my nose sometimes runs a bit too.  I was told it might hit my esophagus and I could have trouble swallowing.  I haven’t noticed this so much.  The nausea and fatigue hits about 3-4 hours after the treatment.  I get smacked with this narcoleptic exhaustion.  I have to remind myself not to drive my car around 6 at night because I might just collapse.  It usually goes away in about an hour unless I fall asleep first.  If I fight through it, I seem to be okay, but there is a moment or two when all I want to do is succumb to the sweet, sweet sensation of fading away in tiredness.  This is perhaps the only similar sensation I had during chemo: the moments when you just give in and let your body do what it needs.

The fading in and out of my body and consciousness envelops my entire daily existence.  Am I here? 

I recall the sensation of falling backwards.  There was that uncertainty of whether I’d hit something or just keep falling.  I don’t know which is worse: knowing when it will end and dealing with the consequences or not knowing when or if it will end at all. 

This pretty much sums up my feelings on my cancer journey thus far.  The shadows of it are always near me.  I don’t think they will ever go away.  It is an encouraging thought to realize that many before me have gone through this and recovered and living fine, productive lives.  I doubt anyone truly thinks about the processes that people who have had serious trauma go through in recovery.  It can be disheartening to watch someone you care about go through those things.  I still maintain that I think this has been harder for my friends and family than myself.  I know what I am feeling and I know when it is good or bad, but that uncertainty is a mainstay for those close to you.  They can only gauge your reactions, expressions, and words. 

I have this fear that the momentum of my experiences will backhand me so fast I’ll have whiplash.  I have to keep moving one step ahead of it before it reaches me. 

Taking in the little moments helps immensely.  I have to realize that the treatments affect your psyche as much as your body. Therefore, I hold this thought close to my heart: there is beauty in the abstract even if it doesn’t always make sense.  

Roulette

I am sitting on the concrete floor of the hotel balcony overlooking the ass crack of a grocery distribution center.  It has multitudes of 18-wheelers lined up like toys.  There are palm trees swaying in the gentle 85-degree weather.

I am in Houston and it is in the middle of November.

From my hotel view, to the right, downtown Houston doesn’t seem that imposing.  Trailing my glance over to the left, however, I see all things medical. 

I had just spent the early part of the afternoon with my mom in the cancer maze called MD Anderson.  When I entered the facility, I nearly broke down in tears because I was so overwhelmed.  A very nice volunteer, sensing our horror and confusion, led my mother and I to the radiation portion of the hospital, which could have very well been a quarter mile walk.  I remember mumbling something to this effect: my oncology center is about 5 people and 3 rooms.  No one blinked an eye in my direction; I looked like everyone else.  I realized that I was indeed part of a large society of cancer patients.

I could relate blow by blow what transpired those few days, but let’s say there was much "think about serious things" idle time between the numerous discussions between my mom and I and our family, the doctors in Houston, and my doctors in Denton.

My situation is a bit unique.  First, according to the doctor at MD Anderson, if I had been diagnosed with lymphoma at their hospital, I would have completed 6 cycles of chemo and then undergone radiation.  Radiation would have always been part of my treatment plan.  However, I had completed 6 cycles of radiation, done a surgical biopsy that was negative, and then completed an additional 2 cycles of chemo.  My doctor thought that with a negative biopsy result and the additional cycles of chemo, I would be in the clear.

Not so, apparently.

The original size of my mass was nearly 11 cm on its largest side.  The division between a “bulky” mass and a “non-bulky” mass is 10 cm.  Essentially, in the academic-oriented world of cancer, I had a bulky mass.  This means that I’m at a higher risk for relapse without a secondary form of treatment. 

The radiation oncologist I saw at MD Anderson presented my case to a tumor board, which consisted of 5 doctors of various backgrounds (oncologists, radiation specialists, and lymphoma experts).  They voted as follows: 4 for radiation, 1 against.  While my oncologist in Denton was on the fence of additional treatment, the radiation oncologist presented him with some compelling information on why radiation would be necessary.

Thus is the breakdown: if I don’t do radiation, I could be at risk for a relapse.  Since the form of cancer I had was aggressive, it could bloom very quickly and my options of treatment might be limited or the dreaded stem-cell transplant would be necessary.

Now, here is the “this-shit-got-real” information: by doing radiation, I could risk heart damage, thyroid damage, and even breast cancer all later down the line.

You can imagine my panic when having both scenarios dumped into my lap.  Sort of the classic “damned if you do, damned if you don’t” kind of situation.  All the doctors agreed that the issue was controversial and a tough call.

I kept feeling like I was getting piled with more and more information, but without the resources to help make a decision.

Frankly, I don’t remember much about November because of sorting through all the details.  I’m not sure the fact that I’m an infomaniac and good at research eased or abetted my paranoia.  I do remember sitting down to Thanksgiving dinner with my family telling them I was grateful we have had the grace and the humor to deal with this crazy year as a family, that I’m lucky to have wonderful people in my life who love me as much as I love them.

The evidence all pointed to the fact that I should do radiation and finally I agreed.  At some point, I emerged from my fog of paranoia and had an epiphany.  Cancer is a condition much in the same way diabetes or asthma is a condition.  Basically, I will have to do what the doctors say and monitor and take care of myself for the rest of my life.    

The doctors say I should begin having mammograms starting at the age of 30 to prevent breast cancer. 

Ok, I will have a yearly professional breast squishing.

I was told that at MD Anderson there is a cardiologist who has research interest in people who have had radiation to the chest and how it affects the heart.  I was recommended to perhaps do a follow up with that doctor yearly to check the health of my heart. 

Ok, yearly pilgrimage to Houston to follow up with the radiation oncologist and perhaps to visit with this cardiologist.

Whenever blood is drawn for my regular monthly labs for the next 2 years, my thyroid will be checked.  If it looks irregular, I will have medication prescribed to me.

Ok, medication to control my thyroid.

This is all very doable stuff.  If you compact it all, it becomes extremely scary and menacing.  Once I begin stretching it out and looking at the individual pieces, I begin to realize that it is all part of a process.  This is the process of my life and will continue to be the process of my life.  I’m tough enough to defeat anything before it becomes a problem.  So, in terms of tenacity in survival, I’m not concerned.

Now, it’s a matter of playing the game smart. 

To be continued...

Take two

Sometimes the opportunity to take a road trip presents itself.  However, in my case, it’s one of those decisions that saying “no” is not an option.

As it turns out, my doctor dropped a mini landmine into my lap today during my monthly oncology visit.  I had arrived at the hospital assuming the normal things: some bloodwork, a little chitchat with the doctor, and a port flush.  Before I know it, I’d be back home to eat some lunch and change for work.

Little did I realize that the “chitchat” would involve my doctor telling me that my case had been in the hands of both practicing doctors and research ones post chemo treatments.  As it turns out, the possibility of doing radiation is still very much in the air.  Except I’m a statistic now and the doctors are split completely down the middle on the next step. 

Thus enters the road trip proposition: my oncologist wants to send me to MD Anderson to do some tests and talk with a panel of doctors to discuss if radiation is necessary.  He wants one of the largest cancer centers in the U.S. to be the tiebreaker. 

I cannot help but feel like both a sporting event and a science experiment.

I’m glad that the doctor is taking all the right precautions and I’m lucky to have his connections to MD Anderson.

However, this does little to quell the paranoia about what will happen right before the holidays and into the New Year.  As if my work, social life, and school situations make any sense at this point.

I see myself streamlining my life a bit.  I will not spill my guts here because I do not know the outcome yet.

Stay tuned…

You left me speechless.

The proverbial hamster on the wheel has been sabotaging my brain and cognitive abilities.  Some days it has narcolepsy and falls off the wheel entirely, leaving me in a lurch mid-sentence, allowing me to hem and haw and…what was I saying again?

I’d like to create a flow chart describing my newfound thought process, but I’ve decided it would have about as much “flow” as tossing confetti on paper.

In many ways, it feels like I have thrown a ceramic plate on the floor and I’m scrambling to pick up the pieces each time I try to construct a thought.  In the past, the connections to my thoughts were a bit obtuse.  Now, it’s a rollercoaster at break-neck speed for me to keep up with myself.  Added to this hellacious ride is the uncertainty if I am communicating correctly or at all. 

I have this fear that one day I will get a CT scan or MRI of my brain and it will look like Swiss cheese.

There is nothing like post-cancer paranoia to add cheer to one’s day.

Did I mention the frustration?

The transition from working part time and living in the doctor’s office at least 3 times a week has been replaced with my return to the library, in conjunction with my bookselling gig, and living in my car.

I am beginning to feel like an international woman of mystery.  My car is in the shop getting the dents, caused by hail and someone backing into me, finally repaired.  Thus, for the past week or so, I’ve been jetting around in a red Mitsubishi Gallant rental, with an assortment of my life’s possessions thrown in the passenger seat and back seats for good measure. 

I feel like I’m living out of a suitcase and surviving on coffee.  I feel like I’m living someone else’s life.

When I explain my post-cancer situation to people, I begin to feel more and more pathetic.  I am distracting myself from my reality, trying to prevent thoughts of cancer relapse and uncertainty from eating me alive. 

In some instances, the words “sad” and “lonely” have been thrown in my direction, which makes me nauseous and on the verge of tears.

Don’t get me wrong, I am utterly grateful that I have had tremendous support during my cancer crisis and that I’m returning to a former sense of normalcy. 

However, even at my doctor’s office, my little routine over the past 6 months has disappeared into seemingly sporadic appointments of blood tests and PET scans.  I feel unceremoniously dumped into the real world again, which is a bit of a shock after all the handholding that has transpired. 

I suppose the focus from “fight cancer” to “do whatever you want” goes from quite narrow to extremely broad and I can barely catch my breath on the changes that have occurred within this past year.

Sure the trick could be to keep breathing as I strive to find my inner Zen.  Easier said than done.

I’m still processing it all and it will take some time to sort it all out.