"And the Oscar goes to......"

NOTE: As I have mentioned before, cancer is not like any other disease. It's nature is crafty, it's nature is deceptive, it's nature is subversive, and as such 'once-a-cancer-patient-always-a-cancer-patient' is about as accurate a description as is possible for those of us hit with this disease. Without boring you with all the statistics, it is a well known fact that the majority of patients who 'beat' cancer once, will eventually be killed by some other form of cancer - or cancer related complication - at some time in the future. Sadly, there is pretty much no getting around this fact. Hell, we are all mortal anyhow, why we think that every one on the planet should be able to live to 100 is beyond me anyhow. Now, I am not rushing the end, by any means, but it seems to me our concentration on extending life to the last possible breath - while disregarding quality of life along the way - is not only costly economically, but draining emotionally and psychologically to those around us (patients) as they wait around for us to 'finally' kick.

So, how do 'we' do it? How do we, faced with some form of poor diagnosis, go on, day after day, knowing that our 'some-day' is probably closer than we think, and how do we live our lives in such a way that we don' create an atmosphere of pity that drags down our friends and family as we 'do our best', 'figh the good fight', 'keep on trucking', 'keep our chins up' etc, etc, yadda, yadda, yadda.

We do it by acting. With a son in college studying the 'Theartre Arts', I often times am tempted to call him and say, "Hey, you want to do a 'character-study' or 'research a role'... come on home and I will put you in touch with some of the best actors in the world (I humbly put myself in this category!)... Patients with terminal illnesses (whether terminal means next month, next year or 10 years from now) should all get awards, Oscars, I tell ya, for their ability of mask and unmask feelings, emotions, concerns, happiness, sadness, joy, confusion, hope, fear and other emotions that we as a group go through on a minute by minute, day by day basis.

I am sure there is a psychological term for it somewhere out there - this masking  process - that people use to either express or hide what is really going on. I also remember a photography project that one of my professors did years ago in college where he created self-portraits of himself with various expressions and the displayed them in a huge grid... I might just try something like that as a visual parallel to this blog post.

In the Theatre world, where the changing of masks is relatively easy - unless the mask is adhered to the actors actual face - the actor goes off stage, puts one down, grabs the next, reappears on stage, alters his demeanor to fit the mask and away he goes... and if he does a good enough job the audience enjoys the show and he is applauded for his efforts...

In the world of the cancer patient, things ain't quite so easy. We display many faces which may or may not reveal what is going on inside the 'actor'. We start with the mask of 'symptoms', move on to the mask of the 'diagnosis', then on to the mask of the 'informer'. Take a deep breath, maintaining and controlling the emotions that go with these masks is very difficult.

Next come the masks of 'treatment', 'surgery', 'recovery', 'more treatment' and then 'relief', when treatment is done. These are the EASY ones! All along the way, there are other important masks we must wear those of support and optomisim; included in this group are the masks for spouses, our kids, relatives, co-workers, friends and the general public. As if this was not tough enough we must HIDE all the negative masks, they must be kept in a trunk, locked away in our own personal mental-prop-rooms.

Unlike a Shakespearean tragedy, we as patients are not allowed to bring out the ones no one wants to see... Believe me they are in there... as well crafted as the positive ones we are expected to display. Masks of fear, doubt, sadness, insecurity, death, pain, unhappiness, concern, self-pity, worry, loneliness, loss, sickness, anger etc. No, THESE masks are the ones that must remain hidden. For me I wear them at  home when no one else is around - or awake - late at night, early in the morning, in the first few hours of the day when people have left for work and school. When the house is quiet, and I am faced with only my thoughts, my fears, and my masks... Sometimes I wander around aimlessly, touching things, reading things moving things around, anything that might trigger a 'mask-change' to something more positive. It doesn't always work.

I get asked all the time - because people can read 'something' in my face - some mask or other - "What's wrong?" or "What's the matter?" ---- and in that instance, I have to decide which mask to grab, the fake one that hides what is really going on, or the real one that reveals the truth? This is the dilemma that make me think that somewhere down the line, someone owes us an Oscar for day to day acting performances by those trying just to hang on to survive one more day, while not bringing down the audience with too much 'reality'.

The Amazing Nature of 'Bubbles'

NOTE: Recently discovered 'areas of concern' in my Liver and Lung, has once again given me 'pondering time' as I, once again, begin the process of traveling between doctors offices, and sitting in waiting rooms. Inspirational metaphors come at the strangest times and places and this one is no different.

I'm 8 years old, and remember, sitting on the warm concrete of our front step on a fine spring day, when the temperature, breeze and  humidity combine - just so - to make a memory moment that creates one of those special pathways in your grey matter. As I sit there, my Dad reaches over my shoulder and hands me a brand new, bright green bottle of 'Bubbles'. Kids these days would scoff and probably be offended by such a simple gift, designed, really to entertain kids so that parents can go off and do what ever it is that parents do (wink-wink, nudge, nudge) on such a fine day and the kids are outside with new bubbles.

Todays kids don't understand how cool it is to crack open that new bottle. The little cardboard circle either sticks to the bottle cap (considered 'unlucky') or sticks to the bottle (considered 'lucky'). Luck determined, the next thing you do is sliiiiiide your finger down into the slippery goop and find that little plastic stick with a loop on each end.

This moment of catch-and-retrieval must be what surgeons feel when they operate on a patient and discover that the tumor they see and feel at that moment, does indeed match the grey-scaled-image they saw on the CAT scan in preparation for the tumor removal process.

Back to to the bubbles. The next key to the enjoyment of bubble making is the caaaaaaarful removal of the bubble-stick - one smaller end designed for  holding with the hand, the other larger for holding the bubble goop... (that is always what I called it anyhow!) in such a way that the bigger of the ends came out of the bottle properly 'loaded' with bubble juice!

Now is when things start to get tricky. If the sunlight is right, I look as the shimmering, swirling colors revealed on the thin film of bubble juice wondering how they form, what they are made of, how the colors got there in that clear special liquid.

From a medical perspective, I imagine the same 'kinds' of questions puzzle doctors and lab techs as well. "How did that tumor GET there?", "What is it MADE of.", "What can we do to PREVENT more of them?"

Bubble juice ready. Having loaded the bubble stick it is now time to release the wonder of the bubble on the world. Talk to any young child (and even some college professors) there are a myriad of 'proper' ways to make the 'proper' bubble. For me, I was the patient one, trying to make the biggest, hugest bubble I could... My brothers and sisters how ever were 'twirlers' spinning around or waving with their wands producing hundreds of bubbles to my few. But that was cool, they were happy, I was happy.

While they were off in the sunlight of the front  yard, barefeet in the freshly cut grass, spinning like bubble derivshes, I sat there on the porch with bottle of bubble juice in one hand and loaded bubble stick in the other. I took a deep breath.....and blew....

A side note on bubble blowing to those who have never done it... Getting the proper force with which to make a big bubble is abit tricky, by the time you have perfected it you will notice that your convers all star  high tops have been doused with soapy water...but if you have mastered it you could blow bubbles that get bigger and bigger with each try.

I think I have made a bubble or two that approached 3 feet in diameter, but here is the catch... Have you ever tried to MEASURE a bubble? I challenge you! Go get a bottle and try! The nature of bubbles is that they are 'wobbly'! As kids we don't understand the physics behind why. As we get older we understand a little bit about gas pressure, and air temperature that affect the bubble world.

Now we are getting to the meat of the post... I suggest you go refill your coffee cup and come back refreshed and ready to continue.

Waiting...waiting...

O.K. You're back. Here we go. I talked a a bit about the relationship between doctors and bubbles, but this blog is about me as a patient, so that is the part of the story we will build upon.

There are several parts of the Bubble world that you should be able to discern at this point. The overall experience is contained in the mysteries of the bubble juice. Me - the patent - am the stick. The fates - genetics, medicines, body systems, treatments, etc. these are the kid blowing the bubbles. Finally, there is the atmosphere - the would in which the bubble lives its life.

If you take time to study bubbles you will discover several truths about them.
AXIOM #1 : Bubbles are fragile. They do not last forever, no matter what we do, or  how much we want them too.
AXIOM#2 : No two Bubbles are the same. And trying to figure out how long they will last is a waste of time.
AXIOM#3: In the right situation, bubbles attract other bubbles, they combine and make bigger, more wonderful bubbles.
AXIOM#4: Bubbles will 'pop' fail, disappear, often suddenly, without warning. Laughter usually ensues and you go running back to the supply bottle for more.

For he above axioms and the story below...substitute BREATH IN THE BUBBLE with Cancer Patient.
And friends, family and medical staff are the BUBBLE itself

The fates, pick up the stick and blow... encasing the breath/essence into a bubble of a certain size... While the BUBBLE has no control over its' size or shape or even it's destination, it can rise, rise, rise, until it disappears beyond some horizon - the kid in us hoping that it will last for ever...drifting on a sunny day.

If the BUBBLE is lucky it is strong enough to combine with other bubbles in the area. A fascinating process - not understood by the bubble blower, but the resulting bubble get bigger stronger as it grows.

Another question that gets asked if the bubble  blowers is, "What is the bubble made of?"

For me as the patient, I see the actual 'film' of the bubble as all the people who bind together to encase the breath of life that was put into the bubble in the first place. The molecule-people who comprise the bubble are all that keep the bubble together at times. THEY know if they fail the BREATH inside, the struggle will be difficult.

Any 8 year old bubble master KNOWS you can catch bubbles on the stick, but you cannot get things to ride ON the outside of the bubble (not even cotton wood tufts, or dandelion seeds!) and it is nearly impossible to get anything INSIDE the bubble to stay without breaking the bubble - certainly not like the kitten in the bubbles in the Dairy Queen commercials - Duhhh! The 8 year old knows that whilde carrying the bubble around on your stick is fun it is much more fun to release the bubble and watch it go.

This now brings us to one of those times when you turn to your Mom or Dad and ask that all important question...."Where does my breath go when the bubble pops?" This is a darn good question - as it pertains to both the physics of the bubble and the mysteries of the universe....

So, not want to get it wrong or to come up with some completely unbelievable bull crap that the kids will see through, the parent sits for a moment, watching the bubbles fly and the kids spin.

He or she answers, "Well, hmm...When the bubble breaks that is the bubbles way of setting your breath free back into the universe, to be used by some other kid, somewhere learning how to blow bubbles."

Knowing that he or she has only answered only half the question, Mom  or Dad takes a drink of soda and thinks before continuing.....

"Ah....that's good." the parent says.

"What? The BUBBLE...what happens to the BUBBLE!" the bubble-explorationist demands.

Looking down at the soapy legs of the child, the pool of bubble goop on the porch, the parent continues..."Well, the BUBBLE knows there comes time when the breath needs to out and return to the world, so they 'let-go' the bubble people are really small now and go looking for new bubble friends to catch and help out new breaths that need a ride so they can be happy."

The parent waits for a response to the on-the-spot creation of 'bubble life'. The child scoops up the bottle, jumps up and off the porch... "Thanks! I get it! The bigger the bubble the happier the breath and the further it can fly!!!" 

"Get busy LIVING or get busy DYING."

O.K., I will admit it here... "Hi, my name is Scott and I am a 'Movie-Re-Run-Addict'...", PHEW, there, it's out there... I can move on... I can talk about my addiction and how it puts phrases, or quotes in my head that run over and over again, like one of those annoying song-lyrics that affect most people.
Those who know me well enough can probably make a list of the 'Top Ten Movies That Scott Will Be Bound To Be Caught Watching', sorry, that is my addiction.
I this particular entry, it is that memorable scene from The Shawshank Redemption, and the quote comes from 'Red', played by Morgan Freeman - "Either get busy LIVING or get busy DYING."
For those of us who have been in the fight against cancer, in particular, we get to a point after all the tests, surgeries, recovery, treatments, side-effects and healing that we suddenly find our selves at one of life's many crossroads.

That reminds me of the final scene of Castaway (see the list mentioned above!) where Tom Hanks, in the roll of 'Chuck Noland', finds himself in his Jeep, alone, again - after suffering alone on his island for 3 years - and faced, yet again with a simple choice, the unknown to the left, or the unknown to the right, all he knows is he has to move on to somewhere.

It's like that with cancer. As a patient, all I hope for is that I will get to the end of my battle and be lucky enough to be HAVE choices, of where to go or what to do - that is the reward for my struggle and suffering, the simple ability to go on, move on to another day, to do. Simply to do. What or where I do whatever it is, really doesn't matter. And then we get there. I had recently reached that point where the choice is to be made - and on any levels it is almost as scary as the post-diagnosis - pre-treatment period (see previous posts).
In the past year or so, I had healed, been through treatment and gotten healthy enough to return to work and to move on with my life. Confident that I had once again made it through another struggling time, and that maybe, just maybe, I would find myself ON life's train instead of strapped to the tracks in front of it.

I was moving along, almost forgetting that ever important statement, 'once a cancer patient always a cancer patient'. Time passes, the cancer and it's implications, and it's pain, fade, fade, fade...until I got to the point where I was back into the 'normal' patterns of life - dealing with work, home, bills, kids, a spouse, schedules, events, plans for the future - the comfortable part, then, out of nowhere, like a sucker punch in a bar that I knew was coming, but didn't want to admit, <WHAM!!!!> I get laid off from my job (see my OTHER BLOG - www.shockinglyunemployed.blogspot.com for this ongoing story).

Zip forward on the disc of life and you get to today, November, 30th, 2011 and I get the news that my CAT scan from yesterday reveals a growing tumor in my lung, and three in my liver. FUCK!!!

As I sat in my chair flipping through the movie channels, trying to process this new event, I run across another of my favorite movies, 'Rocky Balboa' (the last of the Rocky Movies - so far) "But it ain't about how hard ya hit. It's about how hard you can get it and keep moving forward. How much you can take and keep moving forward." Yeah, Rocky. Easy for YOU to say. 


 But, as I sit in my moping chair, I realize that, in my head, I am right back where I was about a year ago. Knocked down, punched, breathing hard, bleeding, looking up at the Cancer beast -chuckling in a neutral corner, waiting, just waiting for me to give in. That is when I here them all at once; Red, Chuck, Rocky and finally Micky yelling at me, "Get up! You son-of-a-bitch! I didn't hear no bell!!" So, I do. I get up out of my chair and make a couple phone calls to people who have always been in my corner, letting them know once again, that I am in the fight, and with hard work on my end, and their support -as always - I have decide to GET BUSY LIVING....


So, here we go again......

Sidetracked by Side Affects

The treatment of cancer varies, as I have mentioned before, from patient to patient, cancer to cancer. The final treatment process - referred to most often as a 'protocol' is reached through a combination of physical analysis of the tumor, the age, disposition, health and even the genetic profile of the patient. If all goes well, the medical professionals and the patient (and the patients family) come to a mutual agreement of how to do battle with the disease.

A quick review of my situation - again, shared by many but not all - the battle plan consists of several parts; Diagnosis, Removal or reduction of the primary tumor, surgical recovery, treatment process (radiation/chemotherapy).

So, seven months after surgery I find myself just at the half-way point of my overall treatment plan. Treatment for me started with 3 weeks of twice-a-day radiation, then a 6 week 'recovery' break then into the chemotherapy process.

For me, that means two primary drugs, Xeloda (a pill form of the commonly used 5-Fluorouracil) and a relatively new drug, Oxaliplatin (oddly this is a drug that uses PLATINUM as it's primary component!).

As I sat there in the meeting with the chemotherapy nurse, absorbing as much as I could about each, drug, how it would be administered and what it's side affects could be for me. To be honest, since this is my second battle, I kind of let most of this discussion go in one ear and out the other, leaving the meeting with a pile of pamphlets, papers and prescriptions - out the door and onto prepare for the chemical battle against my cancer.

Remember, that 'I am the MAN!' -right? I have defeated cancer once, how much more difficult would THIS fight be... After all, I had 'been there and done that' - right? Cancer ain't nothin'.... 'Don't START nothin' won't BE nothin' ' - right? Uh...things are a bit different that the first fight.

Despite 20 years passing between my two experiences, you would think that the process would be simpler, just based on advances in medical science - that would INCLUDE the reduction of possible side effects... How hard can it be? The bigger question, is 'How STUPID can I be?

So, today, I sit here having completed all the steps along the way and have made it through 6 chemo cycles, and honestly feel both stupid for not realizing that I am not some kind of super-hero cancer fighter. I am just one fighter among many, trying to get by day to day, hour to hour. Today has been, to put it lightly - awful. The worst day so far, and now that things have settled down a bit, have felt the need to share my experiences, while I am in good enough shape to do so.

I will try to put the Reader's Digest spin on this round of side affects and how I have dealt with them and how they have changed the things around me, and how I am trying to keep perspective on how my experience is affecting those closest to me.

According to the pile of literature on Xeloda, it is a pill form of 5-Fluororacil (which, oddly enough was one of the drugs I was on (in liquid form) 20 years ago). The material lists the following as potential side-effects: peeling, cracking and chafing of skin from the hands and feet (check, check and check), increased sensitivity to hot and cold (check, check), nausea (check), diarrhea (check - into the bag)...

Now...add into this mix the new drug I am on Oxaliplatin, a liquid delivered by IV infusion, who's main ingredient is PLATINUM of all things, that somehow interrupts the cellular mitosis of cancer cells. Now is where it gets interesting. The side effects of this drug are as follows; neuropathy in the feet and hands (check - I have lost feeling in two toes of my left foot, check - when I woke up this morning (the day after treatment) my hands and feet felt like I was being stabbed by 1000s of needles. I could barely touch ANYTHING hot or cold it took me 20 minutes to get dressed. I was literally in tears. It was embarassing. I am glad everyone else was alseep. I stumbled down to the kitchen, tried - unsuccessfully to make a pot of coffee, found my meds and my gloves and slippers - took about 3 vicodins and a bunch of nausea meds (more on that later) and tried to stretch out in my living room and get rid of some pain.

So, these two drugs - while I am being TOLD are busy battling the un-seen 'micro' cancer that MAY be floating around my body, they are making things in my 'macro' life much more interesting to say the least.

Now on to some new effects just experienced this past week... Weird nausea pains. This is the first time that I have experienced any nausea... I don't know whether it is related to the chemo, or to the flu running through my house the past couple weeks, or to the ongoing adjustment my body is making to having a digestive track with out a colon. But this week, all of a sudden I have become 'Queazy-Man'. To describe the pain, it is a strange combination of 'Extreme Hunger Pangs, followed by I'm Going to Puke My Guts Out' very hard to tell the difference. If I am quick on the draw, I can pop some anti-nausea meds and Rice Krispie Treat (don't ask me why, but some how it calms my innards. If I DON'T do this, I had better find a bucket, or a ditch, or a something, because what ever might be in my stomach will be making a return trip... I had that happen at a client site on Wednesday..thankfully I could hide away for amoment and cover up the leavings with parking lot gravel.

I am glad that I get treatments on Fridays, I try to plan for light-duty Saturdays - just in case I get a morning like today. The remaining challenge is to reminding myself that while my suffering is personal, that there are STILL people around me who care (for reasons known only to the Gods) and I must try to remind myself that they do not deserve to be on the receiving end of my anger, or get yelled at because I am in pain. My family is very inconcerned, obviously, and in their own way and they don't like to see me in too much pain. I have gotten a BIT better at asking for help when I need it, and in expressing how I feel in a way that goes beyond just bitching about aches and pains. I have also learned how to 'move-around' my emotional needs to others outside my house - who I can tell are simply sick of hearing about it...

Well, that is about it for now, I do feel a bit better, might actually go out and attempt to do some studio work before going out tonight to enjoy a belated birthday dinner with family and friends...

The Mystery And Beauty Of Jigsaw Puzzles...

OWe are bathed over in a world of technology, and while in many ways this has improved and enhanced our lives, in many ways, in my opinion, it has lessened or dimmed our appreciation for simpler things. Some call them 'old-school', or 'retro', 'classic', or heaven forbid, 'antique', but none the less, I think there are many things we would do well to 'reinvent', 'revive', 'revisit', or 'renew'. One of my favorites is the good old fashioned jigsaw puzzle.

I know, what you are thinking, "Dude, this is supposed to be a blog about battling cancer! Your struggles, your hopes, your dreams, your experiences... What's with the jigsaw puzzle crap?"

As my friend from the Dos Eqis commercial would remind you.... 'Stay thirsty, my friend.'
I will explain... So grab a cold one, here we go.

According to an exhaustive - 1.87 seconds - search on internet, the first jigsaw puzzle was invented by Englishman, John Spilsbury in 1760. Who, supposedly, was tired of looking at the painting of his mother-in-law, and in a fit of rage took his jigsaw the portrait that was looming over their fireplace. And upon discovering the pile of pieces in a box in front of the fireplace, his WIFE gave him 'the-look' and simply said, "Put it back together, sweep up the mess, and hang the picture of me mum back up where it goes." Well, fourteen hours  and three bottles of horse glue later, the first jigsaw puzzle was completed. Oh, only the first sentence of this paragraph is true, the rest is just me, trying to get inside the head of the London map maker and printer!

In my world, jigsaw puzzles have had greater meaning. In particular they have special meaning as part of my therapy and treatment - both currently and historically.

As I have mentioned before, the waiting game involved in the diagnosis and treatment of cancer is almost as agonizing as surgery or the side effects of treatment. Fortunately, somewhere along the way, some doctor or nurse, or patient said, "Damn, it! Sitting here in this stupid room, staring at the walls, listening to the phone ring, and watching the clock tick by the minutes, is BOOOOOORING. Next time I come, I am bringing in something to do."

So, back at home, this thoughtful person went rummaging through the 'game-closet' as we used to call it....you know that place where sits this Jenga-esque (look it up if you don't know what it is) stack of board games (no batteries required), like Monopoly, Life, Clue, Parchesi, Sorry, Candyland, Chutes and Ladders? And, there, at the very bottom of the pile, waiting like faithful friends, long forgotten, is a squished stack of jigsaw puzzles - lighthouse scenes, fruit in a basket, tools in a drawer, a flower garden.

Our person now verrrrry, carefully grabs a hold of the puzzle boxes, and if they have mad Jenga skills, they can pluck them from the pile without toppling over the stack of games above. Most likely what follows this attempt is an hour or so of reboxing and restacking the games (complete with cursing - and vows to throw them all out) and the plucked puzzles are put into a bag, their next destination, the waiting room.

That brings us closer to my part of the puzzle experience. Since I have been through this cancer experience twice now, I will zip ahead to the part of the story where, every tim I enter yet another waiting room, I look for the stack of puzzles - or nondescript cabinet that is DESTINED to contain them.

Much like my love of crayons (another post entirely), puzzles take me back. They are deceptively simple and complicated at the same time. Whether they consist of 30 over size pieces and a simple picture, or the maddeningly complicated - ceiling of the Sistine Chapel in 10,000 pieces, they have the same simplicity. Open the tattered box, dump the pieces onto the table, take a deep breath, and begin.

The metaphors for life of a cancer patient are deep within the world of the jigsaw puzzle and as I wait for another treatment, or consultation I have plenty of time to ponder them.

To be really successful at surviving cancer, or completing Jigsaw puzzles you must be able to accomplish several things, you must develop skills in areas you might not excel.

First, there is the beginning. Like a puzzle in a box, our lives BEFORE cancer are fairly neatly compartmentalized in such a way that no one else has to see the jumbled insides, they just get to see the pretty pictures we present to the world on the 'box' of our lives.

Then, there comes the diagnosis of our condition - the point at which the pretty boxed picture is ripped open (some of our 'life-boxes' have been tapped pretty tightly) and the pieces of our lives dumped out onto an examining table for all to see.

Now that the pieces have been dumped out, the work begins, various specialists, doctors, nurses, lab-techs many unseen hands begin to piece together the story of the cancer patient, and they all try to figure out how to best reassemble the pieces so that, in the end, the finished puzzle will resemble the original picture on the box, without too many missing pieces.

The same goes for the puzzle I start working on in the waiting room. I am only ONE of the patients that move through the office during the day, and only ONE of those who try to assemble the puzzle. The amazing thing to me is that, each time I return a little bit more is put together, the picture becoming more clear.

Sometimes I get to work on the puzzle for a short time, and at other times I get to work on the puzzle for so long, I get absorbed in the effort, and don't notice the time passing until a kindly nurse nudges me on the shoulder, "Mr. Lightfoot. Time for your appointment." I find myself disappointed that I cannot sit there longer - a strange dualistic dilemma, I know...but still.

It seems silly, but there are 'moments' during the diagnosis, treatment and recover of the cancer patient that seem like small victories to the outside world, but are HUGE to us as patients. Much the same can be said when attempting to complete jigsaw puzzles. If you have never sat at a table with a huge puzzle, and been confused, frustrated, even exhausted by the daunting task of finding just the right piece to drop into a hole in the puzzle...then you should do it...just once... Then you would have a little bit better understanding of what cancer patients (and their doctors) go through.

As a patient, your initial diagnosis may consist of literally dozens of tests, scans, readings, requiring an equal number of visits to clinics, offices and hospitals. If you are lucky, the doctors will bring into the room that 'missing piece' - not quite being held aloft and lit by heavenly light - but still... A victory none the less...."We have discovered the problem!!!!!" and they carefully lay the piece in the hole in the cancer patient puzzle.... and then move on to the next piece....

This puzzle piece assemblage process goes on and on in the life of the cancer patient... Surgery to remove tumors, medicines and therapy to recover from surgery, finding the proper chemotherapy and radiation treatments to battle the remaining cancer.... the hope that in the end, once again, the medical puzzle makers can do their part to put your back together the life of the patient, so that we can go on with our lives.

Back in MY waiting room, I return a few weeks after my last visit, expecting to see 'my puzzle' there waiting for me to finish... Instead, it is gone! Evidently finished by some one other than... Someone else who has completed a picture, and now we move on to a new one. A 'victory' in a sense, a 'puzzle-life' reassembled. However, now, there lies another 'puzzle-patient' exposed, dumped on the table, the pretty picture on the box, giving the assemblers the view of how things are supposed to be - the task again, study, analyze and assemble (cure and move on).

My greatest hope, obviously, is that my personal puzzle will be assembled (minus the pieces representing the cancer), in such a way that I can carry on - a little worse for the wear - my box now a little bruised on the corners, the picture a little faded with age - but still, I hope my experience can allow others to slow down a bit, take some time to remember the simple pleasures that surround us -- even if we are NOT cancer patients, and realize that life is really similar to a jigsaw puzzle, you can only put it together one piece at at time, life goes together in its own way, one cannot 'force' pieces together that do not 'fit', and more importantly you need to step back from what you have 'put-together' to get a sense of what is still missing, and how much there is still to do...

Go, now, to the bottom of the game closet at your house, get out a puzzle. Turn off the computer, the television, the cell phone, dump the pieces out onto the table. Get a cup of coffee and a nice muffin, take a breath. Reach into the pile of pieces, and begin... Your efforts will be worth it...

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.

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...