Tuesday, August 23, 2011

We live a 'tethered-existence'....

The purpose of this blog is to promote my healing through discourse with those who decide to read the posts, but more importantly as a way for me to process things in a way that does not require a person to sit and listen to me blather on about what ever stuff may be rattling around in my skull... Unlike a person stuck in a chair, or at a barstool, or bus stop, or where ever, you the reader can just click away - without continuing to read - and that is fine. I am none the wiser, so I don't feel offended. Again, blogs are usually one-directional anyhow - me to my 'followers', or into the ether world, either way, I guess I just put it out there.

Recently, prompted partly by the fast approaching date of my 30th High School Class Reunion, and with one kid away at college, I have been cleaning out dusty shelves and spaces in my house. What to keep what to throw away, what in the long run might my kids and grand kids want to see that would give them a glimpse into the life of their Dad, or grand-dad, or great-grand-dad. As I was doing this I began thinking about how life expands and contracts around us.

I have come to realize that life is a series of 'tethers' - some attached to us by others, and some we create and hold tight to by the virtue of who we are. I am also coming to realize that one key to this thing we call life and living happily is knowing which ones to cut and which ones to hold on to, and that the hardest thing to do is to let go of them. Sometimes, too, we need others to take the knife and cut away those that we refuse to release, and cannot see beyond our rigid grasp of them, that they simply need to go.

Not to be too simplistic, but in the interest of space, I will summarize the 'tethered-existence' of one man's life... Conceived in the womb, the umbilical tether is the first obvious connection - made and broken through development and birth. From birth we are tethered to family, environment, community, and culture. There are so many tethers; gender, race, ethnicity, language, heritage that it is amazing to me that we ever break free enough to continue, but it happens.

In our culture these first tethers are broken when we enter the 'school-era', where for the next to to fifteen or so, we move away from the confines of family and into a world of peer-community - new tethers form - independence grows, interests change, we struggle to become our own person, to find our own path. During this time we bind our selves and our identities to new people and communities, new values, ideals - yet some connections remain. Some we cannot ever escape.

I speak now of that often unspoken tether that only becomes more obvious in situations like we cancer patients (and other patients too!) face is that of genetics. Over the past 9 months since my most recent diagnosis and treatment, the importance of genetics has become very obvious. In our 'fix-it-pill' world where there is seemingly a dose of 'something' that will cure 'anything', it is obvious at least to me that the pharmaceutical shell game is almost a joke. Don't get me wrong, I LOVE medical advancement, hell, I am CERTAIN that I would not be here, boring you with these posts, were it not for medicine! What is comical is that DESPITE all this, your genetics will catch up with you, eventually.

Eventually, in either saddness, joy, relief, regret, or excitement, we all die. As many others have said, it is more about HOW we live than how LONG we live. For example, I have a handful of friends that expend boundless amounts of their time, energy and money on trying to 'do the right things' to stay alive - my vegetarian friends spend their time in avoidance of meat - hoping that longevity will result, my religious friends spend their time in prayer and dutiful observance of scripture - hoping that their efforts will result in a good life, and a good after life, my health-conscious friends spend their time in avoidance of lifes man-made hazards, smog, smoking, fluoride, preservatives. It all seems kind of pointless from my seat in the doctors waiting room, where I sit, waiting for my next dose of something or other.

Sorry, I 'drifted' - back to the tethers. Children grow into teens, teens in to adults, adults delve into relationships - some with children, some without, relationships change, the cycle repeats. Somewhere along the line we discover there are limits to life - tethers - things we cannot let go of, things we choose to release and those that seem impossible to cut.

Within our Western culture we have developed to the point (good or bad) where we, in my opinion, are not allowed to live completely because of these tethers. As I have mentioned the only ones we currently cannot escape are the genetic ones. But, again, through the lens of my life I can clearly see that the truly free life of the untethered existence is probably not possible. This all sounds kid of dire, but I hope that if on examines their lives that they will discover that there have been times when we thought more about the journey than the ties that bind us to any place or time. I have had many.

Retreating to the beginning of this post, while cleaning I ran across an old journal from one of my more 'adventurous' periods - my time living in Haiti. At that time I was between the tethered existence of high school and adulthood - called 'college' - and was really discovering the world outside my regular life and also discovering things about myself, figuring out who I was, which direction I wanted my life to go...

NOTE: Yes, yes, I know I am blathering, but trust me, I am getting to the point of the post -- afterall, it is MY blog!!!

During my stay in Haiti, I was encouraged to go on a 'walk-about' - to take an individual journey, with no destination, no map, no goal, other than to simply go, explore, observe, and live. So I packed a couple days worth of food, a sleeping pad, my journal, some pens, my camera (of course) and went. Kind of like the old Kung-Fu show, 'I wandered, I worked, I ate, I slept, I met people.' I recall that walk-about with fondness because of the fact that only during that liminal time of life (in OUR culture) is that kind of thing tolerated. That makes me sad.

How does this relate to my Second Battle with cancer? Here it comes folks. I have discovered that due to all the tethers that bind us to the whole realm of adult responsibilities we are simply not allowed the luxury to re-focus our lives, to reset our psychological compasses, to redirect the path of our lives, to re-discover the things we really, truly enjoy. It is not the 'way of the West'.

Think of this - and obviously I have - what would happen if YOU decided to just say, "You know, I just need to some time to go." so, you leave a note on your kitchen table that says, "Dear family, I have decided to take a walk. I will be back in a while." Now, you don't do anything drastic, you pack a small bag with some clothes, a journal, some pens, a modicum of money, put on a good pair of walking shoes and just go. What would happen? You would quickly be branded a crazy person, and someone would come looking for you. You have committed no crime, you have broken no laws, you just decided to 'go' for a while.

Now, let's say you succeeded in your walk, were not re-captured like an escaped zoo-animal, tossed into a cell, drugged with thorium and labeled a nut case, and you returned after say, a good month or so and announced to your family. "Well, I have decided to quit [insert job title here] and become an [ insert 'non-traditional-option' here ]. I think we should sell our house, live minimally and enjoy the rest of our lives...." What would happen?......., see the beginning of this paragraph.

The unwritten, unexpressed limitations that keep us locked into the conventional paths, are the tethers I have been speaking about.

For cancer patients, the simple fact that we (sometimes daily) look down the path of life and see it as shorter rather than longer, come to the realization that LIVING life is what life is all about. We suddenly realize there are many, many tethers that can be cut that will make the rest of our lives as enjoyable as possible for what ever time that our medical treatments, our genetics and our luck allow us to have.

Tuesday, August 16, 2011

Time Marches on, Yet the BEAST still lingers....

Looking at the calendar for a moment, August 4th marked five months since I underwent surgery for, what at the the, was to be a tumor removal, with the temporary colostomy. The surgery was to be followed by a reversal surgery, placing me back on the road to normalcy, living out the rest of my life, having struggled past yet another bump in life's road.

Bumps in the road, yeah, right.

Given my seemingly total lack of medical luck, instead of the 'old-normal', I am now trying to adapt and discover what the 'new-normal' means. To say that the process has been 'challenging' would be like saying the state of the U.S. economy is 'kind-of-a-mess'! 

I had also hoped that the surgery would be a simple, pluck-the-tumor-plop-it-in-the-bucket, stitch me up and send me home kind of thing... You know, a few stitches, a few days of ouchy-belly and pampered recovery at home and then back to the regular grind; work, family, bills, activities, ad infinitum....

Simple recovery, yeah, right.

One thing this recovery process has allowed me to do is to search out the support of others dealing with similar issues (thank you, Al Gore for inventing 'the Internets'!) and, through reading and discussing, I have discovered that my experiences have been very easy (I knock wood all the time) and uncomplicated than many of my new friends. I also discovered that I was wrong about many things regarding my condition, discovering that it affects people as young as 10 and as old as 90 and that, I am hardly alone in my fight with cancer, or with adapting to having my poop come out my belly!

So, returning to the title of this entry, how does the Beast come into things? It has to do with the comfort factor of the 'new-normal'. While I have only been in this new physical phase for less than six months, I have to consciously remind myself that I am not -in fact- myself, any more. Outsiders to this experience who haven't seen me in a while will only notice what appears to be a slimmer 'me'. I do a pretty good job of internalizing most of my emotions, most of the time, and I am thankful to have a handful of people in my life who I can share everything with - or I would seriously have ended things a long time ago. 

The Beast lives inside, lurking, waiting.

There are many stories, analogies and metaphors for the long-term fight with cancer, but to me the Beast that lingers in the shadows seems to fit best. Defeating the Beast began with identifying its 'tracks' (diagnosis), hunting the Beast (surgery), and finally deterring it's offspring from seeking vengance (treatment). With the help of my medical team, I now live in the world of 'Remission' - no one says 'cure' too often these days, because much like a starfish -which grows anew even when chopped into pieces, cancer can do the same thing. My case is a perfect example. 

I live in fearful reminder that vengance may belong to cancer, and victory not to me.

In my case, the treatment regimen I am undergoing is actually called, 'maintenance-chemotherapy'! Every third Friday - three so far, 9 to go - I undergo a day of IV treatment with a chemical called Oxaliplatin - a platinum based medicine - that kills cancer cells by messing up their messed up DNA replication process. The interesting thing is that, currently, there is not even any evidence that I still HAVE cancer - I mean there are currently (thankfully) no new visible tumors to excise, but I live with the fear (sometimes very scary, sometimes I hardly think about it), that it may, once again latch on SOMEWHERE in my body and begin it's slow growth process again. Waiting, biding it's time for it's next infernal attack.

That is the nature of the Beast, it struggles to survive, the cocktail of chemotherapy struggles to keep it in check.

So, this is how I live my life. Day to day, things seem to be normalizing, yet I constantly - either consciously or unconsciously I am always looking back over my shoulder for the Beast. Every twinge, every, new ache, new pain, new discomfort, unidentified or unexplainable feeling, puts me in the mind set that it is the Beast, taking hold, growing, waiting for its next chance to  attack. I fully know that each struggle will get tougher, each treatment has the potential to make things worse or better.

All I can do is pay attention to signs of the Beast, work with my doctors, listen to my body, enjoy my family and friends and hope that I can keep the Beast at bay for as long as possible...