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Monday, June 23, 2014

Here we go again

Here we GO again....!!!!
The fourth installment on the Carcinoma Train surgical intervention. July 2nd...Four days prior to my once in a life time cross country trek with Carol on our way to our new life in Arizona. Some would say that's a real punch in the gut right in the middle of a high point in life for me. Truth is Carcinoma or not I have felt pretty poorly the last few weeks. It will be good for me to find some relief as it has progressively worsened. I can literally hear it and feel it sucking the energy from me. Pain fascinates me. Pain has a funny way of interlocking into your daily life sometimes when it gets bad enough and I certainly understand its effects. But frankly I find pain....well......exhausting.  It creeps into little cracks of your day. Reminding you of limitations of both body and mind. It is a difficult thing to mask completely. It bleeds into nearly every aspect of your behavior actually if you allow it. My solution has always been to keep busy I guess. I get troubled when “pain” limits me. I find it ridiculous. I won't allow it to interfere with the quality of my life.....USUALLY!!! Then there are the times when Doctors say “its time for surgery”....again. You know, I think it would be quite something to never have had to hear that come from a doctor's mouth ever in your life.

This is my fourth Colon/rectal surgery to curtail a squamous cell carcinoma in the past year and a half. This is the “tail” end of my nearly 3 year medical battle that's taken me to the edge and back, quite literally, in more ways than one. It doesn't actually rattle me anymore to hear “you need surgery...again” . But it does get old. I try and remember that each and every step I have taken, some small, some big, have brought me here to this very day. They have all shaped me to what I have become. They have all made a better man. I suppose the reason surgery doesn't really frighten me is that I have heard worse things uttered from the mouth of Doctors. Twice I have been told I "would die”. Imagine fucking that.  No i'ts not a sympathy party, it's just the truth and honestly hearing that doesn't really scare me anymore either.

I think it's important when you're reading anyone's life story that you try and picture yourself in the very same situations as the writer. To make a connection with the writer. A bond of energy between writer and reader. It takes emotional involvement for sure. Try and picture the doctor's office, where you would be sitting, the smells, the sounds, the sadness on the doctors' faces they try and mask. That's a funny thing some of us don't even take into consideration actually. How freakin hard would it be to be the Doctor? Can you even imagine walking into the office and telling another human being that they were going to die?  Or even”you need surgery”, or “you will need indefinite medical following and monitoring for the rest of your life”.  Try that closure moment on for size. Forever...lol.   Regardless of the news given, each and every Doctor faces the challenge of this emotional beat down of a conversation with a patient.

I recently had an enlightened nurse's words affect me greatly. In my visit a month ago I had reported that I felt tremendous. Although I had some start of pain in the previous surgically devastated area of my carcinoma, I truly did feel great. As the pain and tissue displacement has gotten worse over the past month, I recognize that my daily living was being affected so back to the surgeon I went. This man has operated on me 5 times now in life.  Talk about a bond really. Humbling when a man has had your intestines in his actual hands before...hahaha...gotta kind have a bond with a guy that's quite literally been up your ass, so to speak. This surgeon has always been honest if nothing else. He is the head of gastrointestinal surgery at Fletcher Allen and known at the hospital as a “gifted” surgeon. Each time we removed tissue in surgery together he told me the same thing, ”This is a savage, brutal surgery, your gonna hate me”, "just ugly busines" he will comment while shaking his head and looking at his shoes.  But he musters on in the fight to keep the carcinoma at bay.  He keeps saying nothing has penetrated the “membrane” so we just keep an eye on it and nip it off if we don't like it. Easy enough I guess. After four surgeries in the same area, it dawns on me, ”how much exactly is left before I can't function normally?"  How many more times simply under general anesthesia is one human gonna tolerate medically. One more recovery where every single bowel movement or even thought of it brings new levels of what I like to call sheer terror.

The last week I have had a few things on my mind I guess. I try and stay positive and busy. Rarely do I get quiet moments alone anymore and for me that's just fine. Carol and the kids continue to enlighten each and every day of my life. Enriching me with new experiences and bonds. Carol continues to pack the house and I try to stay out of her way. She so loves control.  It's hard to try and tell her that control is simply an illusion really. So I play along and try and share in as many “now” moments with all of them. I continue every day in telling her how beautiful she is.  That was one commitment I made when we met and I haven't ever missed a day. We joke about it.  Sometimes I'll ask her if I told her today how pretty she was. She still coyly smiles at me and blushes but it usually results in a kiss and I am good with that. There is so much tenderness in Carol and I. It's hard to really describe actually. Way too many examples to mention in my blog, but they're always close by in my heart and in the zest in my step when I think of our moments together. Her kids continually surprise me daily with a thought or gesture or sometimes just something that spills out of their mouths. Hilarious really.  To be young again.

The other day I pointed out to Carol and Mercedes (Carol's oldest daughter) that during my terminal illness two years ago I had always prayed for one thing every single day - I thought it was important to teach this point because of the singularity and serendipity of the particular word I chose in my prayer two years ago. I never prayed for healing, never for a cure, never anything selfish, it just didn't dawn on me. I never wished for lottery numbers....  Just one thing....I prayed for one thing....everyday....over and over again....MERCY.  The pain I had experienced over a nearly two year span was so widely expansive throughout my body that it's hard to actually pin point the most severe areas. Radiating pain and muscle weakness that sucked every ounce of energy some days from my very soul it seemed. I remember days when my legs refused to actually move....literally.  I could feel the signal to the muscle and a twitch but nothing.  The major muscle groups of my body failed to move. Over the two years in treatment there were many occasions where my major muscle groups didn't work. Sometimes for days. I lived alone in that scary little death apartment and most of the time I was grateful for the solitude. Moments of helplessness...not so much. One particular occasion I had passed out in the bathroom of this lonely little apartment and laid on the floor for what I can only remember must have been three days.  I just could not stand up.  Hours upon hours passed in and out of sleep, rolling myself up in dirty towels when I got cold which seemed like always.  That cold sweaty linoleum.  I will never forget how it looked at eye level...ever.  One tricky thing about my little apartment that overlooked the park - the ants.  Constant barrage of tiny little red ants throughout my days infested certain areas of my apartment. Sadly, the bathroom floor was one of those places. On more than one occasion my hours passed by in the sheer entertainment value of fighting off the waves of ants that covered my body. In and out of consciousness, I would occasionally wake to the tiny match like stings of my friendly bathroom tenants. I kind of made a game out of it really.  Nothing better to do sadly. When the dead carcasses of ants got too thick that was my clue to start crawling out of harms way if I could muster it. In good times I was able to drag myself over a couple day period to my bedroom, only to find that there was no water in the bedroom. lol.  Back to the bathroom floor I'd go. My ants and I had kind of a deal I guess. Don't take to much of my skin and you can eat all the deal skin cells off the floor you want.  And please...one more thing...stop chewing on me...ow...shit that hurts to be awoken by an ant bite.

I mention this to remind myself perhaps where I have been in terms of medical crisis. Yes today I have pain, and yes the doctors want to operate again to help manage the pain later. But it's still a step back to hopefully take two steps forward. All things being equal...I am lucky to even be here everyday.  During those long days and nights on my bathroom floor dying with ants, I prayed for one word.  ”MERCY”  I guess I still do.  One thing I have done everyday for the past few years is thanking god for every single new day I am allowed to witness the beauty I do. Everyday.  The first light on my face hits and it just pours out of me.  Thank you for one more day.  Like Carol's beautiful daily reminder I think all great things start with doing the small things right every single day.  So without fail, I thank god for another day.  I tell the woman I love that she is beautiful, and when I am in fear or doubt I beg for Mercy.   I imagine that the singular serendipity of the word “mercy” should probably be explained. Carol's oldest daughter's name is Mercedes. From the first moment I met her I have called her “Mercy”.  It's always been a habit of mine to nickname close important people in my world. I've just always done it. I think it's a badge of honor to get a nickname from me.  I've branded many people in my day with my own little term of endearment. It means I care enough for them to take the special time. I think i'ts endearing.  Mercy and I have gotten close. She is a gifted youngster. I enjoy our times together talking and laughing. Her relationship with her mom is a special one as I am sure it is for all moms and daughters. But this young lady is special to me as well in a number of ways honestly. Some of you who know me realize Mercy's presence fills a void from own step-daughter who seems much too busy in life to keep connected with me throughout my illness and even now.  I am sure they would be right. Can't judge my step-daughter for running from my crisis. One thing I learned in all my illness is that each and every person reacts to illness in their own distinct individual way. It is important I think to not judge anyone for their choices in how they face those who are ill. For some it's just too close and emotional. For some it's just a reminder of the fragile state we all live in perhaps. Either way I try not to judge. But I do recognize one thing that always makes me feel bad - the simple fact is that avoiding something to spare you the pain usually never works. At some point and time it keeps coming up. Karma I guess. I used to tell people when I was terminal, "Don't come visit me because I am dying...come visit me because I am living."  For some it didn't matter. Even some of my family couldn't take seeing me in a state of ill repair. Helpless and in pain. I get that. I didn't judge anyone for it. But I do suggest that any answer you seek in life is typically found on the very road you took to avoid the tragedy in the first place. Resistance seems futile to this fact. Death is a part of life. The only definitive thing required in all life is death. It really isn't anything to fear. What the fear is perhaps is never having lived, so the saying goes. I couldn't agree more.

I try and share this lesson with Carol and Mercy. The kids having just recently lost their father are freshly dealing with their closest experience at death. And here I come along. Hmmm.  Perhaps I can teach them a few things about death. But I'd like to teach them a few things about life instead. All of them in fact. I like the recent post I put up to describe how I see life: ”life's journey is to not arrive at the grave safely in a well preserved perfect body, but rather to skid in sideways, totally worn out shouting HOLY SHIT!! What A ride !!!!!!!!!”  I don't just like it....I live it.  I suspect I realize that life is just too damn short to screw around.  Every moment should be seized and choked for every atom of peace and happiness. There is a natural flow to all life and it is really easy actually.  You just gotta go with it.  My recent brushes with pain are making this difficult for me. I am realizing that, so I will try and rest the best I can for the next few days.  Rest for real.  I'll write some and I will laugh a lot.  I will try and refocus my energy to healing waves and try and make a dent on this Carcinoma even before my Doctor's scalpel does. Most importantly, I will try and remember to not waste a single minute of my day or life.

I will close my chapters here in Vermont over the next few days. As we speak a friend from 25 years ago that I had never been that close with really just messaged me - seems she is having a bad day of sorts and needs to talk. Carol and I laugh about this.  Happens every day now it seems. People just feel the need to chat with me. Perfect strangers will tell me their life story. Sometimes it gets a little awkward as people often will get into deep, long, personal stories and more often than not tears will flow.  Just right there, out of the blue.  Seems I vibrate differently. I get that.  Some people ...well most if allowed, just wanna tell me stuff...lol  It's ok though - perhaps they see hope in my attitude. I don't know. What I do know is I never judge any of them for any of it. Even when what they tell me is TMI...lol  Sometimes people just need to vent.  I don't promise answers.  Sometimes I share with them how I see things, sometimes I express my opinion when “asked”.  But mostly I just listen. I have a pretty good internal peace in life knowing every answer to any question is already inside of each of us. Accessing the answers is the tough stuff sometimes for some. Moments of now are the answer I believe. Just a simple “now” moment incorporated with some openness and preferably some beautiful scenery and peace and solutions just pop into our minds. It is in these now beautiful moments that a different portion of the brain is activated actually. It's all really simple really. Attach a “now” beautiful moment with deep emotion and you have a new experience. Usually a meaningful one.

Like all major rules of life, the one that continually comes up for me is ”just tell your story”.  Like a resounding law of nature. My story is full of emotions. Your ability to step into my shoes defines the lessons you can take from my life experiences. I am a survivor. Sometimes people just like being around others who might just have it worse off then themselves. Ha. I have often been told that I have every reason to be the opposite of the positive selfless soul that I am, but that doesn't really quantify for me.  Why would you? I have been to the edge of death and back more than once. All things being equal, is there anything more serious than planning your own funeral? I am lucky to even be here at this moment writing these thoughts for you all to read. Bleeding all over these pages raw emotion. But to be fair in life, I ask you one question. When you have come to terms with death, don't you just need to realize that every minute of life is in fact a precious gift?  Do you need to remind yourself that you could get hit by a truck tomorrow? Probably not, for most it's easier to just ignore death until you have to deal with it. Until it sneaks up and steals a member of your circle.  Then you wade in sadly and selfishly perhaps as you cry over the thought of never seeing that person again. I get that death is sad for those to wade into it in this manner. But what I guess I am trying to say is life does go on after death. I am certain of this.

There are more layers to life and death than we may ever know. I did not go to heaven but I did stay in God's Holiday Inn Express for a short time and I can tell you one thing to be true - it is the light and it is beautiful. One thing science teaches us is that energy never dies, it just goes elsewhere.  At the time of death, recent research indicates that the human body loses approximately one ounce of weight.  How is that possible?  Many steps were taken and many results tallied but always about the same - one ounce.  Body fluids were accounted for, but still one ounce.  The things outside of our five senses are real.  It takes a different vibration to see them and feel them. I am certain of this fact. Everyone who has died and left this mortal plane still exists in energy. Bodiless and free of mortal restrictions but nonetheless present at any given moment. Even our memories of our dearly departed are not just memories. They're the actual energy of the departed right next to you. I believe they guide us everyday.  People ask me all the time, "Are there angels? And are they real?"  I assure you that angels are real and they are everywhere. The funny part is that in a certain way every living thing is an angel.  We miss the better part of recognizing the various angels right in front of us in the mortal world so often that seeing angels from another level would be simply impossible.

What I would like to share with you other than my story and a lot of emotions are some conclusions about the flow of life. What you do with them is your free will. I always believed solutions and theories we come up with by ourselves are the most impactful and meaningful. In fact they're usually always correct too.   But here is the tricky part of what I think is the serious answer of life- to really really see things clearly, you have to actually step out of the box. This is a scary thought for some. We spend so much time getting into a comfort zone about things...status quo, no surprises...that we fail to see that comfort zone is actually an early death.  I believe the uncertainty of new experiences may just be the key hole to seeing things you never knew existed.  Anything new will show you the very edge of potential and possibility.  It's important. Everything you have been taught may not be correct. You should question everything.  You were told all your life to “color inside the lines”.  Society demanded it. This is normal....that is not.  It's at this defining line of potential that the true world reveals other layers.  Ironically it takes courage to take the step out onto the limb of what you have always been missing. That limb is lonely sometimes. You are a naked target to the nay sayers who just don't wanna have there water rippled with something new and magical. No one wants to be labeled “weird” or strange. All great discoveries were made by man/women who stepped out onto this limb. They took the heat until it was made law by man and its science. Then and only then did the new thought become law or a rule. A new idea. There are leaders and there are followers in life I think. I am all about an open minded skeptic.  It's the closed-minded I worry about.  Take an interest in a topic of life not a position, I always say.  Never a position.  People change and evolve.  A position becomes a defensible object.  Best never to defend but evolve in all things.  Leave yourself room to expand perhaps in life.  You just never know when someone's gonna change your mind...lol

Educate yourself as often as you can and make an informed decisions that's flexible perhaps. Nothing drives me crazier than someone making determinations about something with incomplete information. The answers to everything are already inside you.  Access is the key.  Stepping out of your box of social ok's may be the key to seeing under the skirt of the universe.  Do I think it's a conspiracy that we're all led through life with our five sense blinders?  You bet I do.  I am certain of it.  Take politics - the very divisive nature in itself feeds on our souls and re-affirms its own need. We can't even unite as a collective so why not stir the pot of opinion and make politics a needed drug so we have something to bitch about. It's an age of quick information. Scientists are saying that with the internet human experiences can be shared in such a quick dynamic manner now that we as a society are literally learning at a rate never before recorded in human history. This type of knowledge takes pace to keep up with. Living in a shell of everyday comfort and no surprises lulls you to sleep. You may be missing key things being discovered. I assure you it's happening now as you read this.  Some discovery is being made as I write this that could change the way you see the world if you so chose.  I guarantee you it's happening right now. The human race is evolving every second and it's important to step back and make sure you're not missing the train.

I think it's time we all realize and accept that everyone in our path is meant not only for a reason but a purpose. Your ability to see it is what defines the pace of your evolving. Step outside the box of normal. Normal and I have never ate at the same restaurants frankly. I'm ok with that. I have been different all of my life. I'm good with that too. One thing people will always say after meeting me is that I will be remembered. That's just perfect for me. I try and take a piece of everyone I meet in life. Feels good to know others take a small piece of me as well. That's a legacy. I think everyone is my teacher and I try to miss nothing. Signs are everywhere. I try and point them out daily to Carol and the kids. Some call them coincidences...some say serendipity.  Whatever you call them I believe the quality of one's life drastically changes when we start seeing these serendipities for what they are - a purposeful part of our own paths on a road to a higher consciousness evolution. Everything in life is energy people....everything.  Each atom, each molecule has an electrical signature.  Gotta see it and know it to harness it.  There are levels in life you're missing because others told you it's not possible maybe. I am trying to tell you that anything is possible in life.  How have I lived this long? One day at a time I suspect. One thing is for sure. I go with the flow...resistance is futile. lol  Who knew a line from Star Trek was so on point.

There is a path to life for sure and it is deeply imbedded in our own individual perception. I suspect like the saying goes - Stop doing the same things over and over and expecting different results.  It doesn't work.  Try something new.  The sheer energy created alone in even a new thought is palpable, I promise you.  "Now" moments are the key.  Slow down a little folks, smells the roses, question possibility, have faith in everything, fear nothing, manifest positives and for the love of god just live.  Stop needing to judge or categorize everything, it's futile.  Judging and labeling things is the end of observing the thing for its truest full beauty.  Trust everything that comes along your path is for a purpose.  The beauty of life is in defining the purpose.  The real beauty is when you someday realize that the purpose isn't just one single purpose, but many, many in fact.  That's when life gets explosive.
I believe our environment and our perception of it most importantly is not a finite thing.  It forever changes and can change and should change.  Thinking positively isn't a sports bill board or slogan, it's nature's law.  "If we believe we can achieve" is an actual state of awareness reserved for the faithful, but I assure you it's everything. The quality of your life is in direct proportion to your ability to truly see. But I tell you this again - seeing is not just done with your eyes.  You have got to believe.  You manifest your reality every single minute of the day.  The hilarious part to me is that 99% of things taken into our brain every minute is thrown aside and ignored so the body maintains a balance.  That's funny.  Perhaps changing our perception allows the balance and not the environment.  Seems resistance is futile except in how we perceive it.  Pretty simple really.  I think you have to start to learn to love yourself first and the rest will follow.  Stop saying that's too difficult to do.  Stop thinking the gym will help.  lol   Just love yourself as fabulously flawed as you are, perfectly human  Be the very essence of compassion.  If at a crossroads in life, choose the path that betters others and all things will come to you. I believe you get everything you want in life by helping others get what they want.  I am certain of this.  I believe you have to trust in it to really see.

For now I will continue to believe and stay mentally strong enough to handle the new experiences ahead for me.  A new surgery, well, same but new.  Perhaps there is something I should be seeing here as well.  lol  Gotta be the truth,, free will for me to decide, but for now I will put my head down and keep on plowing ahead, believing every minute that I am grateful to be here, grateful for everyday.  I will be strong enough to ask for mercy when I need it, and I will be wise enough to enjoy the mercy when it's right in front of me.  I will continue in life with the idea that each encounter I have with someone in life is a choice.  My choice is to make an impact, to love like no other, to celebrate every minute I can, to breath deeply, fear nothing and just live.  I will continue to write my book.  It seems my invitation to the International Association of Near Death Studies conference is heating up so I prepare for that, although it seems pretty simple to put a group of gifted minds in one place and see what happens.  I suspect its gonna be special.  Makes you just wonder what a collective group of minds like this can create.  Wow.  My book coincidentally will be done in time for the conference so like everything I don't think it's just a coincidence.

People will often remark to me in my story how amazing the immune system actually is.  Lol.  I think that's funny.  Here's one last tidbit for you to chew on as you read my story and blog - I had no immune system.  Explain that.  You just have to believe.

So onto packing more boxes I go with sound heart and clear open eyes and a love in my heart that's second to none.  I am indeed a blessed man. I will try to write more but it seems most is going into the book so I apologize for gaps in the story.  Not sure who even reads these, but I am glad you took the time today to share with me parts of my story.  What I can tell you is that life through my eyes is very very different than most and I am ok with that, but I think what you have learned is that this very theory may be the secret to the universe.  I hope you find a part or all of it and live all of your life in peace as I am trying to do.  I encourage comments or questions in the blog so feel free to fire away.  I hope you all have a glorious day

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