"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...