Wednesday, August 19, 2015

From Five Days Post-Op

This was dictated into my phone over the course of Monday night and Tuesday afternoon from a hospital room in Tower 3 of an unnamed hospital.

So this is a hospital post on the night before I am to be going home.   I'm a little doped up right now, so it might be interesting.

For the most part my experience has been the stuff nightmares use to scare other nightmares.  Of course it hasn't helped much that my anti-depressants were somehow overlooked in all the chaos my first three days in, so I am sure things in my mind were not lining up with events happening around me.  I do know for a fact the pain medication I was on was causing me to hallucinate rather extensively.   I definitely recall lying in my bed and "Watching" the television and enjoying a really funny cartoon until I actually opened my eyes and saw the History channel was what was actually on.    There were also a few times that people came into my room and spoke to me and when I opened my eyes, the room was empty, but I quit taking that pain killer after 4 days because I was not enjoying it at all.    The drug is quite strong, but the effects are short lived while the negatives are rather long lasting.    The negatives outweighed the pain relief in the end.

The Hospital has been a mixed bag.  South Miami Hospital was phenomenal service with occasional bouts of badness.   This hospital (which I was born in) has been the opposite in every regard.   I think the main problem is that they have gotten way too big while trying to keep the same costs that they had as a small hospital.  The end result is a lot said about patient care being number one (although they did state their goal was "very good care" and not "excellent"), but they lacked the resources to give that care.     For example, they were supposed to check on my every hour during the day and every two at night, but six or seven hours would go by with nobody checking on me.    Seems (according to a technician) that they tend to leave younger patients alone more as they said young patients take offense to offers of bathing or the nagging of getting up to walk.   Let me assure you that I was incapable of doing any of it on my own and would have loved offers of help.       This aspect was made even more ironic by the fact that my neighbor is an 87 year old woman who had to have her grand daughter "remind" her that the nurses were there to help and she needed to stop hitting them.

In the "warts and all" spirit of this blog, it is time for some blunt honesty: I can say without any doubt I had a complete and total mental breakdown on Saturday and I would like to apologize to every single soul I had to deal with or, more to the point, had to deal with me on that day.   Not one person saw me; they saw the effects of withdraw, fear, helplessness, and a lack of anti-depressants.   They saw something I had never seen before: a Brad without any control and lost in fear.   Apparently as I demanded they transfer me to another hospital I said "I never feared cancer killing me, but I honestly wonder if this hospital will!"  I've been embarrassed about it since.   Happily, Sunday they started my antidepressants and all was good mentally again....or was it (Dun, dun, DUUUUUN!!!!!!!)?

I am going home on Tuesday (tomorrow from the perspective of writing this).   Well, not all of me as half my colon is staying behind.   The surgery turned into something out of Gilligan's Island as a three hour tour just extended and extended.   I was told the operation ended up lasting almost six hours with just one hour alone dedicated to nothing but removing of scar tissue from the chemo and radiation.    While my rectum was originally going to be removed and I was to be sealed there, they found just far too much damage to leave enough tissue to seal the area if they had removed the rectum, so instead it is detached from every other part of my body and will just be a souvenir of days long gone.   History Channel and HLN are my constant companions although no amount of high quality hospital dope could get me through either Nancy Grace nor Dr Drew.

End of Monday's babble portion and now the start of Tuesday afternoon's:

I can honestly say that I am a little scared about my future right now.   The colostomy is an entirely different world  from the iliostomy, but it is still a change and if I am going to be honest (and why would I bother writing if I weren't going to be?) I will admit to moments of wondering if I actually can do this for the next 50 to 60 years and if I really want to.   That is a very long time; longer than I have been alive.   I think this is a thought any sane person would have at this moment where we just passed the point of no return, but I also know given what I have already endured that I can endure much worse and come out smiling.  I bet this is something I can go through over and over again; although I am NOT looking to put this theory to the test so slow down Universe!

I am going to miss peeing in bed.   I am not going to miss the room, the TV, or the solitude...and the solitude was my choice.   I told everyone who offered not to come and even told my parents they didn't have to wait until the operation was over before leaving because it would be late.    I told them they don't have to come visit me because all I do is sleep, but they did.   You cannot stop a Jewish mother when her son is in the hospital from doing anything.    You stand a better chance of convincing North that it is South.

See, the thing is that I don't want people I care about to see me the way they would in a hospital bed; as I see people in hospital beds.   Few things are more sacred and private to me.    While I don't show it often, I am still human and some dignity it appears has remained and my vanity doesn't want those in my life sitting around in a room as I have a scar on my stomach, a bag of shit on my chest, tubes in my nose draining my stomach, and IV's hanging off my arms.  It is just not a memory I want people to have of me.    Everyone did ask if my mom was my wife or older sister though.   She was flattered.

I'm tired of transcribing right now.   Will finish this later.   I am out, free, and alive.  Also happy and having a Diet Coke: my soul desire from that hospital hell: they only had Pepsi!  Can they get nothing right?

Wednesday, August 12, 2015

Pre-Op Thoughts

I know I have a prohibition against blogging while taking medication, but my surgery is tomorrow so I really have no choice.

Last night was monumental; it was a historic moment in my life    Last night was my last traditional bowel movement. Last night was the last time that I sat on a toilet.  Last night was the last time I wiped my arse.  Last night was the last time period.

It is very strange doing something for the last time.   And it is not like when one says "this is the last time I'm going to have a cigarette" he says as he smokes out of nervousness.  This was an honest to G-d no looking back no second chance no changing your mind last time I was going to do something and I knew it going into it.  Countless times in our lives we do numerous things for the last time, but how often do we go into it knowing it?

I've never enjoyed bowel movements.  I'm sure that is actually a stupid statement as nobody enjoys it.  They come at inconvenient times and create odors that can clear the most congested nasal passage.    But then again who doesn't really enjoy a good shit from time to time?   I can be the only one who occasionally feels deep satisfaction with what I have created sometimes, am I?     TMI again?   Sorry...

Without the daily bowel ritual, how will I catch up on my reading?  My news?  Am I supposed to sit there pretending I'm just constipated until I finish that next chapter?  Is it even possible for me to read and retain what I read without a toilet attached to my ass?   Does anyone really read without one attached to their's.   I bet there is one attached to you as you read this.

I also wonder how many hours per year I am now going to save on average.

I wonder how many trees are going to thank me for not using them to clean myself.    I wonder if they will send me a card, or would that be too ironic?  

I wonder how many fish will bless me for not sending them wads of used toilet paper.    I wonder if that blessing will be mitigated by the fact I will still be sending them...um, poo.  No hard feelings.   I think some of you eat it.   Gross, but who am I to judge?

In closing, I want to leave you with some wisdom I found in an issue of the comic series event "Marvel Civil War".  It is something Ironman says to Spider-Man that struck a chord deep within me and I feel relates to us all:
In everyone's life, Peter, there's an 'it'... your wife leaves you, or you get cancer. There's your life before 'it' and your life after 'it.' 9/11 was an 'it' of national magnitude. --Anthony Stark from Amazing Spider-Man Vol 1 Issue 352
One last paraphrase from an unknown source: "IT" does change who you are; "IT" reveals you.

Tuesday, August 11, 2015

My Mind's Got a Mind of It's Own

So here is where we are today at T-52 hours: nervous and working against myself mentally.   I know I shouldn't and am fighting back with all I got, but in a battle between my mind and my control of it, the mind has an advantage.  It knows my weakness and fears far better than I do and is introducing me to new ones constantly.   Lucky for me, I am sarcastic enough even to myself that I can counter most.     Here is the latest form of attack and it is good one:

"So Brad..."

"Yes self.  What have you got for me now?"

"A doosey."

"This should be good."

"Oh, it is."

"Hit me."

My mind pauses in sadistic delight and says "you know your 'plight' has been totally internal, right?"

"What do you mean?"

"It has all been inside you; not on the outside.   100% of the people who look at you can't tell there is anything wrong about you; different."

"100% of people have been wrong my entire life; I have always been different."

"Yes, but not physically.   You always could fit in."

"Not really, but please go  on."

"Your problem has been one of internal plumbing.   As of Thursday it will be external and it will be for the rest of your life.   You will have a literal bag of shit hanging from your chest for all to see.    Good bye shirtless days!"

"OK, fair points, but I can counter them."

"You think you can?  I am your mind, Bubba!  I know what you know!"

"Apparently not.   How often do I go shirtless?  Never?   Is there something less than never, because that would fit far better.   And a "literal bag of shit" is far better than the humiliation of a pair of pants full of shit.    A bag is a medical condition only assholes would mock; a grown man with shitty drawers is worthy of mockery from all."

"OK, but it is an operation..."

"I've had way too many operations as of late to fear this one.   And the man doing it is the same man who has had 100% success with me thus far, so there is no worry about it."

"Liquid diet!   For days!"

"That does suck, but the ability to wear boxers again is worth it.   The knowledge of knowing I didn't just shit myself is worth it.   The security of feeling like an adult again is worth it.   The loss of shame is worth it.   The return of some of my dignity is worth it."

I smile to my mind and say with sadistic glee: "I would go through this and more to end what I have endured.   I would go through this and more to feel human again. "

I would not trade one second of my journey for anything.   Cancer has blessed me with as much as it has taken away, maybe more.   Thursday is not the Apocalypse, it is the salvation.

Praise Jeebus.

Sunday, August 09, 2015

Sudden Lucidity

I never remember my dreams.   I fall asleep and suddenly it is the next day.   I know I dream because everybody does, but I never remember them...except today.

Last night I was in prison.   I don't know what for or what prison I was in.   The entire dream took place at a bench in the yard on a single day.   For some reason, I had a pipe, a lighter, a small supply of pot, and a cell phone with hundreds of numbers in it.    My entire dream consisted of me calling every number and getting voice mail as I tried to find someone to get more pot to me so I could continue to deal with my situation.   I knew everyone was more than willing to aid me if I could just reach one of them, but not one answered.    And the situation I needed aid with was my lack of pot and not my imprisonment.

The idea that I somehow had a pipe, pot, and a cell phone in prison never occurred to me as strange; nor did the fact that I told my plight to numerous other inmates who tried to find solutions for me rather than stealing my pipe, pot, and/or cell phone.   They were sympathetic to my cause.  

I have no memory of who the names were or who the other inmates were.   The dream was interrupted by my cell phone ringing in real life as a friend was calling me to see how I was feeling.  It was the exact moment the dream was achieving a lucid moment as I started questioning my situation and how unrealistic it was.    I said out loud in the dream "this is like a nightmare" as my phone woke me up.

I not only remember this dream, but understand it entirely.    The prions was cancer obviously.   The other inmates were the members of my cancer support group.   The cell phone was my security and the pot was my strength.   I was calling out to my security to help fill my fading strength.   I even said in the dream "I need to start rationing what I have left."   It was a feeling of being lost and in despair that was ironically interrupted by a real life sign that friends cared.

Now, the cell phone is important.    It had hundreds of names in it, so that tells me I know I have a large support group, but the fact that it kept going to voice mail is symbolic of the fact that they all have their own lives with their own trials going on and they can't always be there the exact moment I need them.   But real life, as if spying on my dream, showed up to say "this is not true" as a phone call on my cell phone woke me up and said "How are you feeling?  What's up?  Do you need anything?"

My not seeking escape from the prison is telling to me too.   It is a good sign that I am accepting of my situation and am instead seeking how best to remain comfortable in it rather than dreaming of a day it is all over.  

To quote an Elton John song: I'm still standing better than I ever did feeling like a true survivor.  

Thursday, August 06, 2015

File Under "T.M.I"

This post may be more than you want to know, but fuck it and yes I cursed; not out of anger, but joy!   Today marked a historic event in my life that few people knew about: today I bought my last bag of Depends!   Yes, I have been wearing Depend for over a year now; it happens when you have no rectum.  So why am I posting this?   Because I am fucking happy to close this part of my life and, as I have said numerous times here- I have no shame!

The shame of buying Depends fades fairly quickly; faster than buying tampons ever did which is ironic since there was never any chance the tampons were for me when I had to buy them.   Buying condoms the first time was harder than buying Depends the first time, but that was mainly because I refused to buy condoms from a woman back then.   I was afraid she would say "you don't really think you're going to use these, do you?"    Buying Depends is more of "you aren't really going to use these, are you?" and since I am not looking for sex or a partner right now, that old shame carries no weight.   I buy them with pride actually.

"Yes, these adult diapers are mine and mine alone!  No, I am not buying them for a relative or someone in my care.   Perhaps you have noticed an aroma around you since I came to stand here?   Yes, I have no rectum and these are for me because I periodically don't shit my pants, but I usually do."
I can say this now without worry of people mocking me because in exactly one week and two hours it will all be in the past.   Thanks to "Chemo-Brain," I can't even say for sure if it will be a memory; blessings everywhere!

To Depends,

I am sorry I am no longer a customer (not really, but for the purposes of expressing sympathy I will say I am).   I have been a very loyal customer for these last 18 months or so and will recommend your product to anyone who needs it, but there are few things I will be happier to be rid of than your wonderful product.     Best of luck in the future and I hope you can replace me with someone less bothered about wearing them...preferably senile so they won't even know they are wearing them.

Love,

Brad.


And to get back to an old theme of my posts: I have passed the Book of Brad and I still love G-d.


Tuesday, August 04, 2015

That "C" Word

I have pinpointed the source of my anxiety and it is that dreaded "C-word," but not the one you think.   I am not talking about the "7/30/13" type of c-word, but rather the one that hits us all and does so numerous times throughout our lives.   Yes kids, I am talking about "Change."

Did you feel that shutter drift down your spine when you read it?   That is because we all know it, and we all fear it.   Sure we psyche ourselves up before it and try our damnedest to reshape that emotion into excitement or anxiety, but let's be honest: it is fear and that is OK.   Fear is natural.   Fear always heralds in the unknown and Change is the ultimate unknown, any change, so fear it; worry about it; lose sleep.    This is all vital to the process.

I've always loved the expression "Worry is a form of Jewish Prayer."  I take it to mean instead of telling G-d what we want to have happen, we leave the end results in His hands, but express in no shortage of detail exactly what we DO NOT want to happen.    We are saying "of the myriad of options and outcomes you have before you, please don' t pick this one" and usually G-d listens.   People say he doesn't answer prayers, but the truth is we don't pray for the right things: leave the outcome to Him and express your desires only.

None of the above mitigates the symptoms of fear, and it will only make you miserable to deny it.   "I'm not scared" and "I'm not nervous" are things we tell others hoping if we see that they bought it, we might believe it ourselves, but they know we are terrified.  

Communication is 80% body language, so I am only aware of 20% of what I am communicating at best.  Hell, even the 7 year old child of a co-worker who is spending the summer in the office called me out on it, but didn't realize it when he did.  He asked me why my hands were shaking.  I hadn't realized they were as they never do.   Now I notice I am making far more errors typing than I normally do.   Subtle, but an obvious symptom of the fear.  So too is my constantly in motion right leg and foot.

The reason this process is vital is because it aids in the acceptance process that occurs after the stimulus of the fear has passed.   Experience is expectation minus perception.   This means what we experience is what's left of our expectation after what we perceive happens.   To make it simpler (you're welcome), we go into something with an idea of what is going to happen, good or bad, and then the something happens.   This either confirms our thoughts, or removes them with a different experience.   What is left is what we think of what we went though.  

Going into an unknown expecting good sets you up for disappointment.   Going into an unknown expecting something bad sets you up for surprise.   I feel going into an operation that this is the path to use.      This "law" if you will is not a universal one at all and is rather a guideline than even a "rule."

I went to the dentist today and a painkiller I took has kicked in, so I am going to stop writing.    Rule one: Thou Shall Not Blog High.