Wednesday, April 5, 2017

The Coolest Thing

So here we are. March 31st marks a full six months from the time that I willingly and quite anxiously lawdeld, yes lawdeld (waddling with a serious limp component) into the CU Anschutz Medical Center expecting a small group of unfamiliar, yet highly esteemed Doctors, Nurses and Surgeons to perform a graphically disturbing procedure of considerable complexity. In other, less heady, words, I suppose that I was substantially convinced upon the act of a miracle at the hands of strangers! Lol

Looking back on the details of this personal journey, in it's entirety, as well as the many others out there walking this nightmare of a road in whatever form or fashion that it presents itself, is a mind blowing anomaly for me to conceive.

It can be difficult at times to find that tiny ray of sunshine, that mighty strand of hope that we all love to dream on and to propagate for each other and even for ourselves. While the crushing cold darkness with it's all consuming hunger is increasingly bearing down all around you and the weight of it all is a thief to your every breath. And just as the ominous waves of sadness wash rhythmically through your soul and slowly pierce its way down through your last membrane of solitude and sanity, It is during these times that we can quite easily find ourselves seemingly teetering on some proverbial edge. Where we are faced with our own mental integrity as well as to the reality of our true nature and physical mortality.

 It is at the extremity of these distressing times, that shortly thereafter and by all considerable imagination, a funny little thing occurs. Sometimes, it can even feel as though it is the coolest thing! 

If you are currently out there somewhere treading barefoot through the thorny thickets of this process, then I can relate with you for potentially feeling inspired to come fire-bomb my house right now. For some odd reason, it seems to be overwhelmingly irritant to here those heart felt assurances from very well meaning folks simply cheering "just hang in there, it will all get better soon, you just gotta give it some time". 

Even though, we know deep down that this is more than likely, absolutely true, it doesn't seem to allow for any sense of real comfort and if nothing else, ironically almost seems to accentuate the current frustration or anxiety! At least that is my true experience with it and could, quite possibly be, just me. 

It is a funny thing to gradually become truly aware of the reality that you have landed in a relationship that places the majority of your mortality outside of your own natural faculties. In other words, to become dependent upon some thing, like a machine or a pill etc.. 

Of course, if you really barrel down on the thought, you realize that we are all born into this state naturally, dependent on air, water, warmth and food right from the very beginning. However, we seemingly have tenancy to take those things for granted up until we are denied them. And in some ways, I am truthfully thankful to not have to expend so much thought and energy into being overly concerned with that aspect of life. I feel as though I've nearly perfected the art of discovering all the multitude of things to ultimately worry about.

But, as a recovering Cushing's patient, we are immediately thrust into a new life dependent relationship with a nasty little steroid called Prednisone, with no real determinable time-frame. As it is with most things of this nature, the length of time you are tied to this evil demon of a drug, is as variant as there are people having to deal with it. And furthermore, no real guaranty that you will ever be able to separate yourself from it. A thought that I never did fully come to grips with. The only possible way to become free of this paticular bondage is if the remaining portion of the Pituitary gland, if you should have any, begins to recover and to wake-up. stepping back into it's significant role of  governing over all of the body's entire adrenal system which is the driving force behind every chemical/hormonal balancing act and function.

This potential little event then, for the Cushie anyway, becomes the primary focal point for recovery. You might say that all the proverbial eggs get put into this basket waiting and wishing on that moment to arrive. Normally, we are watched very closely over a period of time following the surgery and tested periodically to discover this event occurring. And, it is usually common practice for the surgeon and the endocrinologist to institute a minimum grace period where it is considered to be highly unlikely for this to happen in order to deter from overly high hopes and expectations from all the parties involved. 

The testing for this awakening begins at around the three month mark with very low anticipation and then proceeds in three month intervals out to about as much as two years at which time it becomes necessary to consider the real possibility that the Pituitary has become irreparable and that the patient will have to be set up on a long term supplemental hormone treatment plan. Which again, was a thought that I struggled to be able to accept even six months into it. 

As I mentioned above, the Pituitary awakening becomes the all consuming focal point of the Cushies recovery process and that the follow-up testing for these results are in increments of every three months which, if I have not rambled on too dreadfully long here getting to the point and you have so graciously stayed with me, you may have already calculated that I am currently due for one of those appointments being that I am now 6 mos. post surgery, but a funny little thing happened the other day and I am finding it too difficult, in my overwhelming excitement to hold out from writing about it.

But, the other night, while I was setting up to take my regular dose of medications before going to bed, I discovered that a single pill was left rattling around in one of the organizing trays, which should not have been there. Upon further examination I was a more than a little shocked to discover that the pill in question was actually one of my Prednisone doses from a few days back! 

Naturally, my mind raced with wonder as to what could have happened and if it were possible that I could have actually skipped a dose? Through previous experience, I had come to realize that I would quickly begin to crash and go into what is referred to as an adrenal crisis if I waited too long or did not compensate appropriately my dosage to daily stress factors etc. These experiences have taught me fairly quickly the seriousness to which I am dependent having been bounced into the ER on several occasions. 

So, perhaps you can imagine the bewilderment that I was experiencing over this queer discovery. But, at the same time I became increasingly more excited at the thought that maybe, I had, accidentally and unknowingly sustained through a twenty four hour period without crashing! The very idea was too tempting not to try and perform an experiment or test of my own. The plan was to purposefully go ahead and skip the very next dose and to monitor the results keeping close to the meds in case I should begin to crash. 

I am happy to report that as of today, I have been without a dose of Prednisone four full days now!!! And obviously, I feel well enough to type out this mammoth of a blog post! Of course, I am sure that my doctors will still want to run some tests and check everything out for sure, but I am feeling quite optimistic at this point that I have turned a HUGE corner in the fight on this disease. This, in conjunction with the fact that I am continuing to be successful in losing the weight that is a all too ugly side effect of this condition. I have just recently posted the exciting achievment of crossing under the 200 mark, but as an update I am now another 4lbs lighter at an all-time record now of 196!!! 

I know that I have struggled with some depressing or negative posts in the past, whining as I go, but it has been in the spirit of trying to stay dreadfully real here. One thing that helped me substantially from the very beginning, aside from the amazing support and patience provided by my Friends, Family and by far, my GF Nicole, was all the amazing stories made available on the internet by those who have been down this road much longer than I have. And some, who are no longer with us as a result of this potentially deadly disease. I was and still am thoroughly encouraged , inspired and unspeakably thankful for each and every one of their willingness to pour their precious hearts out in order to provide awareness, education, and empathy to those who may one day may unfortunately find themselves walking this road. 

You are not alone! And it is not the end that it will sometimes make you feel, and think that it is! It is rare, but it is real. It is nasty, but it is certainly do-able! And I would like nothing more than to be able to pay forward, to some degree, a similar benefit as what was gifted to me. Please feel free to contact me if you or someone you know may have any questions or just need some ear to bend. Please know that I am here.

Sunday, March 12, 2017

Brain Storm

   Remarkably, it has now been a full six months plus, since the era of post surgery began. A fact that struggles precariously to win any real validity within my heart and mind. Though I happen to recognize, in direct correlation to the advancement of years, a tenancy to fail more often at the construction of accurate time-lines, I seem to be even the more vilified by this treacherous trickery of the mind due to the slew and hue of all that calamity so recently thrown my way.  Yet I am, just as every other living creature, inevitably tied to the perpetual consistency of that modern day advent, the Calendar, which so eloquently and effectively keeps my story lines from straying too drastically far.

   However, and at any rate, I felt that it was time that I provide some glimpse into the various thrills and chills of experience for which have recently become the way of life just this side of the figurative coup upon Cushing's vicious reign. Apparently, it seems to be, that as with most of life's more dramatizing moments incurring upheaval and restoration, the perceived "good" comes always paired with it's evil twin, "bad" and the restless battle between the two. And my personal experience provides no exception to this universal law of nature. As a result, It has been my daily struggle, to say the least, to overcome the ill perceptions which continually flood my mind and taunt me with extreme altering emotions. 

   My experience is that of drifting through an endless fog of mental clarity and coherence. It has become a challenge to attain a solitary focal point and to establish any consistent direction or goal orientation. The awareness of the degree and to what volume all the stimuli of life is being absorbed for processing has become much more vivid and overwhelming. I find myself secretly and constantly wishing to be able to turn it off and allow my brain to rest. 

   Every day presents itself as a totally unconnected scene being haphazardly spliced together to form my very own real-time Fight Club horror film. The effect of which brings about enormous volumes of angst and frustration. Only that in the deeper recesses of my being, I am cognizant of the illusory factor of my experience driving my feelings and emotions which only serves to undermine their validity and further dismantling any stable position of seriousness. 

   Truthfully, I prolonged my urge to write this post due to this agonizing dark shadowy filter for being concerned with offering up a report that was anything but encouraging and positive in nature. I continually wrestle internally with the thought of anyone who may one day stumble upon this blog out of suffering from the recent diagnosis and or realization of being taken hostage by this sly, sinister, thief of a disease, who, in hopeful desperation, such as I was, and quite honestly still am, seeking to find those virtual pot of gold testimonies that tell the tale of miraculous short term recovery and all things back to normal in only a few short days etc.. Ok, so I might be slightly exaggerating a bit here. I admit, that I knew, and I suspect that most would, that the absolute truth regarding recovery and it's duration, would be a divergent path entangled with intermittent progress and certain regressions and that the individual results would be totally variable for each individual respectively. But, unfortunately that knowledge didn't seem to keep me from setting up an expectation that has thus far, exceed the results of my own reality. Which has, in it's own sense been a source of anxiety and frustration through the process. What has been an unexpected surprise to me during these last few months, has been the degree to which I have realized the extraordinary power and influence that emotions, and it's shadow, feelings play throughout the creation of our own unique time-space experience. 

   If for nothing else, I must bring forth the aspect that, though I still find many occasions where I become stuck in these rolling bouts of negativity and depression. There is, as I mentioned above, the other side of the 'ole proverbial coin, which is to say that I am in most certainty experiencing a progressive movement toward a healthier state of physical and mental being. One such example, is that, as of this post, which again marks six months since the removal of the tumor in my head, my body has correspondingly shed off a full 52 pounds with very little influence of my own. This single fact alone accounts for an enormous amount of positive energy, encouragement and hope for the future. Physically, I am noticing slow but sure progressions, which are granting me an ever expanding platform of freedom for which I am exceedingly grateful! 

Where I am at today, is by far, a leap and a half further from the burning flames of yesterday and though there is still the lingering smell of smoke and the static memory of attrition, I remain focused on the light ahead and just keep pressing on. All my efforts are devoted to finding that perfect balance between where I am at, where I have been and to where I am going armed with the knowledge that there is no place more beautiful than in this very moment. That there is a futility in striving to be anywhere other than definitively within the miracle of this present moment with its infinite array of extraordinarily precious gifts that make up the whole of my experience. There are times where I catch myself reeling with the victim oriented thought of "why me?", but have been met with the resounding conclusion of "why NOT me?!" 

   Why is it so hard to accept, sometimes, a story inclusive of trauma and strife, such that we all have in our own various ways, as a spectacular event of creative individuality, custom made for our carefully selected and star-cast performance to add that tantalizing flavor and spice to an otherwise dreadfully dull empty existence? There is in my humblest opinion a universal connection to all things and that for this very reason makes all things enormously meaningful and full of purpose as it relates to all other creatures big and small spewing forth from a point of unfathomable love and spectacular creativity! These are the thoughts that tend to offer peace to my ever so troubled soul and to settle the ongoing storm within my brain.

Monday, January 2, 2017

New Beginnings

Today seemed very appropriate for posting an update to the Cushing's Trail as it is the first day of the new year and has me, just as in all preceding years, has me reflecting on all that has transpired in my life to date and in what ways those things have affected me personally as well as the people I have shared my life with.

Today also marks the passing of three full months from the day of Surgery to remove the Putitary Tumor that is signature to Cushing's Disease. 

So, today marks a significance that is, at least slightly elevated from the traditional New Year beginnings of my past experience. It would be of tremendous understatement to simply say that quite a lot has transpired over this last year, but I would be a fool to think that I could begin to relay all the fine details that would prove that statement to be true. The biggest hurdles being that I have realized that a large part of this disease both in development as well as retraction or recovery is seated within the mental / emotional realm. That funny little place hidden to the outside world. And though there be physical changes to the external that imply progress, It is the internal battlefield that rages undetected and explainable. Being the victim caught up in this web is frustrating and difficult as you find yourself caught up in the sway of faulty delusions and endless emotional exchange that erodes that internal trust of judgment for which you are tempted to believe only to have it swing full width and knock you from your feet. Unfortunately, the world around you is kept oblivious to this war within and based on the merits of your physical appearance, shower you with loving praise regarding the speedy recovery. 

There is just no way of being able to competently reveal the truth of the matter and to see the earnest enthusiasm from these caring hearts makes it a tragedy to consider a reconciliation at the cost of a slain heart. 

But, the brighter side of all this is the fact that as I have become more aware and in tune with the tricks of hormone imbalance, I have slowly been able to develop a method for dealing with it, which seems to be consistently improving with every passing day! There has been a gradual but noticeable increase in "good" days vs. the "bad" ones and I find myself becoming more positive and energized toward my progress.

As for the physical changes I eluded to earlier, these have increased to a very noticeable rate of change in the positive direction. Where it painfully slow within the first two months following the surgery, this last or third month has really taken off for me. It has not come without much work, however. But with tremendous support of my wonderful girlfriend, who has helped me to remain faithful with a daily exercise regimen to the tune of 3-4 hrs/ day at the community health center. Real progress has begun to show. In the beginning, it was difficult to even walk from the parking lot to the entrance of the facility, let alone to attempt much physical exertion with any specific mechanical equipment.

 During this period our visits were shorter and more deliberate with the majority of our time being spent in a neat little feature called the "Lazy River", a constantly flowing ribbon of water that is 3'-9" deep and winds around to complete a sort of track that is aprox. 1/16th of a mile per lap. This activity was perfect in that it was very low impact and to walk against the current providing a resistance that not only began to rebuild the muscle in my legs but to stretch out the overly tight Achilles that had ruptured months before this, in turn began to add flexibility back to my left ankle. Another benefit of this exercise is it's ability to effectively burn a few calories along the way. All things combined served to provide a very effective and enjoyable therapy. 

The over-all results have been of a snowball type effect. One of the biggest and most noticeable areas of concern for me was with my weight. Something that the Disease had taken control of and, by the time of the surgery had brought me to a staggering 257 pounds, which for me, was about 50 lbs over what I had allowed myself to be prior to the onslaught of symptoms related to Cushings. But I am happy to report that as of two days ago I have successfully shed a full 30 lbs since the day of surgery and for as best as I can tell, it doesn't appear to be done just yet. The exciting bonus being that as I progress along and feel a little bit better, I am steadily becoming more mobile and active, which just further emphasizes the results. Of course, all of this makes me very excited indeed!

And last but not least, I would be missing the single most important aspect that has dramatically impacted the course of this entire compilation of events, from beginning to date and that is the unconditional, persevering, extraordinary support of so many absolutely incredible people and most specifically my girlfriend Nicole, who has been right there by my side in full sacrificial mode throughout this entire ordeal without complaint. She has proven to be so positively influential, and an exceptional gift through and through.

 Each and every one of my precious kids along with their special friends have also been treasures beyond expectation with each expressing their own individual capacities to love, serve and bare patience through difficult and trying circumstances! 

 Also, my Mother and her husband who traveled half the countryside to be here physically on-sight and offer their love and support during the surgery, but have just always, without fail, been available to lean on 24/7, around the clock. 

And on and on the list goes with just so many great people all of whom have shown me in so many ways the power and blessing of relationship and community and the dramatic impact that this can have on a persons life and how fortunate I am to be among such a strong representation of this effect. I cannot say enough to be complete in my gratitude. 

This is as much as I can share to this point as to the place that I have come since my previous post. And as I have said before, it is my hope that the information I share within these articles might help to inspire strength, courage, hope, perhaps some information for anyone who might be suffering from this crazy disease or perhaps someone who knows someone that is caught in the vicious grips of Cushings. I don't think that I have ever said it before now, but I would love to hear from anyone that might have a story or can relate or just anything that you feel urged to share here. I firmly believe that there is a greater potential for effectiveness and intelligence with the convergence of shared thoughts and experiences.