"Are You Ready For Some FOOTBALL!!!!"

PATIENT NOTE: Once again I find my-self in a post-surgical, pre-therapy period, and stuck in a chair (at home much sooner than expetetd this time (more on tahat later). I've done this before....surguries, bipsies, waiting, healing is never much of a schedule change, it does how ever allow the mind to wander as I try to figure out how to approach the next phase of treatment. My condition had changed, according to one doctor for the worse, according to another just to more a more challenging effort. So how do I wrap my head around this news? As I settled in to watch a college bowl game it hit me -- a game plan, what I needed was a solid game plan, full of offesnive tricks, defensive strenth and special teams performance to coaching brilliance, kind of like MOST Steelers games and on RARE Occasions a Purdue game.
When most people wath a football game - even those that have PLAYED football, they really don't have a clue about what goes on in the pre-game preparation reqired before ball kicied off thee tee...Facing another treatment battle, I begain to consider my situation. I am a few weeks away from the play-offs and here is what I am faced with as a coach. My team has made it through a rough season, starting way back in March, when my whole team got hit wit a bad case of  'disase poisonin'. This devistated my team and delayed the start of spring training by several month.s

Whe spring finally broke the team Doctors had most of the key players taking snaps and learning the new play book. For the 'chemo-patient-team' these instructions come from the chemicals  that make up  the 'coachingstaff' who's job is to put the team together so that when the  players hit the field, they are ready for the battle.

In the biophysical world of game-prep, during the off-season the team owners (doctors) and scouts (researchers) always have their eys out for new and exciting players and coaches who can keep all the players on the field.

Now as a 'fan' (family and friends) of the 'team' (patient) what you DON'T see is all the worry... Despite the full stadium of supportive fans who send their care from all over the country, the bright shiny-objectivity in the 'game-face' of the coachiung staff, nor the fear-based sweat on the brow of the coach (patient) - which looks like the glimmer of 'confidence'...

Despite what you may hear or see from some of the 'media-outlets' that try to let the fans know the ''status" of the team, the ACTUAL state of the team is a carefully crafted statement released with juuuuuust enough information to get the point across to the people who are 'betting' on how the season is going. In the real world of football we FANS know that there is not a single coach that spills all it's teams. None of them say for 'certain' about which stats will 'start' which ones may 'play' and which ones will be on the bench.

In my world as cancer patient / coach. I constantly run this same batttle... Depeding on the closness of the 'circle' of friends, depends on which 'report'  I give. While, like great coaches, I donot lie, I don't always do s full reveal of the injuyry report.

What I also don't fully reveal is the depth and scope of my play book... Will I rush more or pass more on offense (will I run in a hurry to the fastsest treatment approach, or will I take a 5 step drop and look for a longer, wide open sure handed cure). Defensively, will I BLITZ or play ZONE (will I throw catuion to the wind and try the newest most advanced treatment, or will I play it more conservative and try the more 'vanilla' or simple treatments for my illness. Finally, some one asks about Special Teams... A last resort, yet vital part of any good game plan. I take a deep breath and look around my family and friend 'press-room' and say that I HOPE that we win the game out right, and all or special teams have to do is kick extra points, but if we need the help have sweet kicker for long field goals, and a punter that can pin the opponent deep inside there territory giving us a great chance at victory....

By the way...Even through the narcotic haze I noticed that my Purdue Boilermakers beat Western Michigan!!!!!

"Beyond Here, Be Dragons"

NOTE: Being patient with a life-threatening illness changes you. Period. You are never the same person coming out of your experience as you are going ing. From the most basic issues - removal of tumors or body parts, or whatever bodily issues you face, to the toll that your illness take on your closest family and friends. Sometimes those 'outside' the experiential bubble, it is hard to realize that the overall experience has so many effects on the patient from depression, pain and suffering to psychological issues that have short and long term effects on everyone around them. It is easy, relatively speaking, for the outsiders to say all the right things - those oh-too-familiar, and yes, important, words of support, while forgetting that for the patient focused on the sometimes moment to moment survival, they may sound like a babble to be swatted away, and this reaction may offend those with even the best of intentions, and I am speaking for all of us here, we are sorry for that.
     Likewise, this experience forces the patient into a near constant state of mental flux with feet landing in the real world, the world of the dismal future, the world of the hopeful future, and the world of the immediate present we are trying to drink in as we move forward to whatever comes. This condition can also be damaging - we as patients sometimes forget who and what is important, and even necessary in our real-time  physical lives - family relationships, friendships, economic needs of the household, plans for all the 'what-ifs' our conditions force us and our families into - and this can make us do crazy, strange, stupid and even dangerous things. I don't have to remind you of the myriad of movies that illustrate this stuff, but just wanted to put it out there, that for the most part, our off-putting behavior should be somewhat expected as 'we' try to process everything going on, and also realize that 'we' are trying our hardest to make 'your' experience with us as challenge free as possible as we march on to what ever is to come. Please forgive us our weaknesses, and hold our  hands for strength. Many times that is all that is necessary.

I am a fan of maps, cartography, and the sense of the unknown and adventure faced by early sailors embarking on ocean voyages in the 'flat-earth' era. My perusal of these maps, l find many maps made by captains from this time that 'run-out-of-space'. Not because of lack of paper or parchment size, but because of two things; both of which play into my life as a cancer patient. Reading captains logs from this time reveals that they would often place the now famous warnings, "Beyond here, be dragons (or monsters)" The two primary reasons for this are; the unknown - no on had GONE past the sketched limits, or to hide 'secrets' - that they did not want others finding should the maps end up in the wrong hands.

I understand this, as a cancer patient, and also understand those around me who have difficulty 'reading' the maps I am drawing in this life as a patient. As I journey forward, for me there seem to be more of the unknown to deal with, than there are secrets to hide. If you haven't noticed from my previous blog posts, dealing with life as a cancer patient is complicated. Each day I wake up can yield a host of things that I have never faced before, and like the old mariners, many of them, by no virtue of my own choice, I have to deal with on my own... No one can control the 'mutiny' going on in my body. No one can control other ships creeping in to take pot shots at me, or to attempt to siddle up to me in the fog and take control of my ship, wresting what ever I have built from me.

In so many ways, I am adrift, I have a map (treatment plan) that is being used to guide my journey, but to where? What lies beyond the edge of the  map? Is it a certain death in the clutches of some unforeseen beast? Is it an island of peace, serenity, and relaxation, filled with naked women and the finest rum and spices? I simply do not know, but yet like those sailors addicted to the sea, I continue to sail, forward, ever forward, pushing the edges of the map. So far, I still have the drive to see what lies 'over-the-edge', be it good or bad.


The previous is how I see my experience through treatment. Some days are smooth sunny sailing with light winds, and the future looks bright (these days I tend to get lazy and forget that I am still actually being treated for something trying to kill me!) and much like a Captain who may turn the wheel over to a first officer so he can nap in the sun, I end up suddenly jolted back into reality by some new issue - a side-effect I had not experienced before, or a test that show up something new or unexpected - and I have to jump to the call try to get my vessel back on course - again to where? Only forward.

For my friends and family who, by virtue my being 'gone' on my 'journey', I cannot see how my 'absence' makes their lives the more difficult. For mariners it is usually a lover, or wife, or children left on shore, as the story goes, looking longingly at the flat, mysterious horizon, for the 'return' of their 'captain' from the 'voyage'. O.K. enough with the quote marks, you get the point. In my role as the Captain of this adventure, I have had to use the map I have given - sometimes a crude, knock-off of the one given to me by my doctors - to try to explain where I am headed, what I expect to find and most importantly - when or even IF I will return to port, dock the ship, poke holes in the sides and stay ashore with them. I have to look at them and shake my head, glance unknowingly as they do at the map, and say, "I just don't know. All I know is that I have to go... I have to try... I have to move forward, for all of us."

For them, the other meaning of, "Beyond Here Be Dragons", is something that I cannot control. They see me venturing off onto the sea of treatment, and wonder what I am doing when I am 'gone'. Do I have   secrets I don't, won't, or can't reveal to them about my voyage? What kind of 'life' do I lead on the trip? Do I think of them? Do I wonder about what THEY are doing while I am out, 'galavanting the globe' dealing with a journey they cannot really understand? They have fears, and concerns just like the families left on shore by the captains.... "Does my Captain have another wife? A mistress? A family, a life in another port? Does he continue to voyage on with the hope of coming home to US or to journey on to THEM?" They look at the map and wonder these things as they look with hope for the mast returning on the horizon. They are as unsure about my return to their shores as I am about the fate of this, my latest voyage.

Back to my current voyage...

For the past several months, I have been cruising my ship, The H.M.S. 'Hope' on kind of auto-pilot. I have been napping, un-awares as mentioned above and mean while, slowly beneath the water line of my consciousness, visible only by CAT scan, the sea-worms of my cancer have begun boring holes into my liver, and lung. I had thought that the last battle when I had sunk the vessel Colon-Cancer, that I was victorious, heading on to the tropical paradise for a quick resupply, and then turning windward, had been heading home to port... The desire to unpack my sea-trunk, stay home, grow a long beard and write about my adventures becoming stronger all the time...

Then, one clear sunny day one of my mid-shipmen comes running into my cabin, and informs me that the boat is leaking, the worms have eaten through the hull, and the crew is being forced to bail. As a patient, this is the hardest part, my crew on board and my family at home, look to ME for answers. As if by some magic possessed only by Captains in these situations, I can tell them that it will all be o.k. We will make it to port and not sink somewhere out here in the uncharted waters 'beyond the edge' to which I have sailed.

Here is where captains get creative, and here is where the captains luck either holds out, or falters...

I consider the situation - the worms eating my metaphorical ship - being my liver and lung - need excising. The ship needs repaired, I hope I have what I need (chemo) in my store room. I consider telling them the truth, putting them to work, diligently, not knowing for sure myself if we will make it through. Then I think of the other option. The 'rum' in the store room. Should I admit to myself, that being beyond the edge of the map, there really is no land in sight, I have no clue where I am heading, the stars at night are all unfamiliar now and cannot guide me, and that no matter how hard we fight, we are destined to sink, into the mire, to the bottom of the sea? This being so, should I break open the casks, get out the instruments, unfurl the sails and party on to the distance until we re all too drunk to realize we are doomed?

I stand there, on the silent bridge that is my life, I listen to the creaking boards below me, the snapping of the lines and sails in the uncertain winds now breaking across the bow. I look at my 'crew' and see the look of concern and hope that 'I' have the answers and I make the decision. "Alright, my surly knaves, we push on. Carpenters, get the toxins from the storeroom, get to killing the worms, get rid of the rotting wood. The rest of you, grab the buckets, and get to bailing. Strip what wood you need from top-side, repair the hull. Unfurl the sails, turn her into the wind and let's make for port. Cook! Fire up the galley, keep the food coming, keep the boys fed, and by all means keep my pot full of fresh coffee. We have some rough sailing ahead, but push on and we shall make it home."

I finish my evidently inspiring speech, return to the cabin of my mind. As I listen to the men at work outside the door, I wonder if my words are as hollow as an empty keg, or if we will indeed, again, be successful in our journey and return home again.

In less than a week, I embark from shore, this time in the face of a storm rising, a departure into the dark, with the hope of a new sunrises of calmer seas, and safe sailing, yet again into the journey of treatment and recover.

"Beyond Here, Be Dragons." - but my ship the H.M.S. is battle worn, fully stocked for the adventure and ready to sail again. Out and back, that is the plan...

"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!!!"