Tuesday, October 16, 2012

Hey Mr. Tambourine Man

I am, as Bob Dylan suggests, much akin to an exhausted narrator of a dreamy tale to which I seek an answer of how to escape, unable to sleep yet wandering sleepily as if in a dream after someone playing a tune like the pied-piper who I somehow know in my heart-of-hearts has the answer I seek entwined in his song but my weariness is so profound that try as I might, I cannot catch up to him to be freed through knowing it's words. My days are more nightmarish than many of my nights which at least bring some hours of deep, dreamless and yet unrestful sleep provided by any one of many versions of benzodiazepines. As of late, when my days aren't filled with experiences of learning how to reteach a lung how to perform oxygen exchange again after being half choked with foreign fluid and the searing pain of trying to re-inflate it, I can still try to enjoy a semi-joy filled life with my family. It's true the latest episode of "draining" the fluid from between the pleural spaces (the liquid isn't actually in the lung itself, it's between the two pleura; the parietal and visceral), which prevents the lung from fully expanding, this last time being 50% full, was much more traumatic than the last. Neither was anywhere near pleasant since I had a bad reaction before the actual procedure began last time too. This gave me the opportunity to know what a collapsed lung feels like when they were almost finished draining the 3 liters I had sloshing around in there, I began coughing uncontrollably and painfully as I hyperventilated at the same time but was gasping for air I couldn't get because the lung was completely collapsed and took almost 2 hours of coughing and gasping for it to get it mostly inflated yet still some fluid did develop in my lung and I continued to cough painfully and gasp my way through the rest of the night coughing up the left over fluid. I can only just now breathe fully but with pain still stabbing in my side and tightening worse if I bend over or need to cough. I just hope this too fades and doesn't become the norm. All they can do is perform either a thoracoscopy with talc pleurodesis (which "blows" talcum powder between the pleural layers to cause scarring, thus binding the two layers together to prevent fluid from building), or inserting a permanent 'drain' to thus empty the fluid as needed wherever I am. Hmm, decisions decisions... We speak with an interventional radiologist tomorrow to discuss options. A normal day in the life: what kind of tube should I stick in my chest?!

Alysha did a good job of filling in what's transpired in the last few weeks as i've been a sociophobe and have avoided writing to anyone. To that I apologize for. I've preferred the altered reality of fiction novels to set my mind into another time and place so I don't have to confront my own present reality. It's easy to describe the few days that have been truly horrible and make it sound like a daily occurrence, which it isn't, yet as Alysha mentioned, most days are still filled with almost unbearable pain which I attempt to just muscle through so my kids can enjoy their life even though mine is hard to to picture as enjoyable if I can't focus past the pain and discomfort that adhere to me and invade my mind, body and soul. Still, most people can't believe how well I look when they see me. I am glad I can still be perceived to look healthy and vivrant, though mostly am biting back twinges of pain at every move and masking the odd sensations I can only begin to describe of being freezing yet overheated and sweating at the same time. Aside from the aches and pains, again, Bob Dylan nails it with the line of how: "my weariness amazes me," embodying the acute speed in which I now live due to mental and physical fatigue. From that same lyric string, the answers i've sought to find a direction in which I can follow to get me through this bloody confusing mess of a disease and the treatment we've followed and continue to seek answers from but get only riddles and attempts of cajoling contentment without anyone stating outright that they're treating me as a terminal case, which they do, echo what Dylan jangled on about how the answers to my conundrum of a life 'vanish from my hand', leaving me standing there blindly "but still not sleeping."

Being "branded on my feet," as Dylan sings on, is exactly how I feel when I want to run out to fight it bluntly but am left swinging wildly at nothing but my own infinite anger. My feet don't move and every ounce of energy drains from my body just from the thought and initial impulse to move. All my joints ache, my breathing is labored and with every breath, pain shoots from under my left armpit through my ribs and into a sharp jab in my side and strangely right behind my heart as if the cancer is trying to strangle that as well. I'm defeated before I take my first step. I feel like collapsing into the miserable sorry heap that I feel like and crawling away somewhere dark to curl up and hide from the world so I don't owe anything else to it so I can just evaporate from existence. Then my kids run in laughing yelling "daddy daddy", thus giving me the strength to face the day. My wife finding every opportunity to provide positive outlets for me, and hearing and reading all the outpouring of support, prayers and love also give me the drive to push past the first overwhelming crush of each day, but each day goes on, good or bad and gives me the opportunity to make the most out of it if i'm not just totally floored by it all that day or I can live it and get the things done I want to in order to feel... 'ready'. I know God wants us to submit our cares and worries to Him as he will take care of them all and deliver us in His own way. With my knowing where i'm going but just not quite when yet, I just want to enjoy the most out of everyday without worrying too much about doing everything perfect, just getting by to the best of my ability and eating good, not necessarily the best I could possibly be eating, but doing what I like and what's fun. I try to deal with alot less BS when I possibly can; I cut people off when they're just wasting my time or beating around the bush, I just don't have time for it. Priorities are different now too; some things just don't really matter as much anymore so I don't bother myself with them.

So "let me forget about today, until tomorrow," and I will write you another tune. Until then, i'll just keep on keeping on as best I can and I wish the days that are brought to you all bring you to where you need to go and fill you with what you need. We will most often find what we seek if we just allow ourselves to open our eyes to what's right in from of us. I seek a cure for something incurable in a case that's unsolvable and for surgeries that are inoperable. My solution is right in front of me: peace. I just have to wrap my head around exactly what that means for me right here, right now. It's mine for the taking. I just have to stop being angry at having to settle for that and not a return to the life I had before and accept that what I have is what i've got. It may not be what I want, but it's surely enough to grant me happiness and peace within if I can figure out how to hold it.


1 comment:

  1. "Good theology doesn’t evaporate — even if faith gets bruised — because truth is still truth. God has still very much got it. Our Gospel is not rooted in prosperity, but in a place of suffering: the Calvary cross." http://gettingdownwithjesus.com/faith-miracles-and-modern-day-fools/