It’s 2:16 in the morning

I have had a restless night, not much sleep because I have thoughts swirling in my head.

It is a while now since I really have had one of these nights.  Since surgery, I am taking medications to help me sleep because I continue to have pains associated with my surgery and recovery.  I also have pains not associated to my surgery and recovery that make it difficult at times to find a comfortable position to sleep.

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But on this particular night, it is those thoughts swirling in my head.

I am unsure how long it will be by the time I publish this post.  I may have upset someone and I may have upset you and I may have upset myself.  I make no apologies to no one, including myself.

This blog has always and will always be about me and my life and for that I make no apologies.  I am who I am and have changed for the better in many ways over the years.  I continue to change for the better, though at times the changes come slow; to me at times slower than what my life will provide me here on this earth.

When I die, I will not be a perfect person; I hope to be a person that at least tried to be a better person.  I strive every single day to be a better person.  Some days I succeed and many days I fail; some days I fail miserably.

My point is I try and I do it my way, because I know me better than anyone else knows me.

I have been told at times by people that they do not understand me.  I at times do not understand me either, but I still know me better than anyone else.

When creating this blog, it was a way for me to write about me and my life.

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My life in words for I hope one day those important to me would read.  I have no idea if they will read it or not – I don’t know.

This brings me to those thoughts swirling in my head tonight, this restless night and me writing this post at 2:16 in the morning.

I don’t really like to be rude; I can be though, and have been times in my life.  I can be rude and have been rude to people I know and to strangers alike.  My personality is complex and at times people do not understand me.  This has already been identified.

When writing and publishing posts, I attempt to write in a way where I do not come across as rude and I try to consider other’s feelings.  So please do not take this the wrong way – I am being honest here.

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When I write posts about me, the true very personal me, I ask for no advise.  I write the true personal me because it is important for me to do so.  I have come to appreciate support and encouragement here and the friendships I have made are invaluable.

Now, again at 2:16 in the morning, I am writing the true personal me.  It was a little while ago; and that week was tough and that ‘I don’t know’ was tough and therefore I was rude because I did not ask for advice.  I was writing the true personal me because it is important for me to do so.

Pain

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For the many months

It has come and gone

 

It seems like a lifetime

That I have made it my own

The surgeries, the short recoveries

And there is my personal hell too

The many days, the many nights

There was never a rescue

 

There were short breaks

Before the significant reprise

The many tears that flowed

From my watery eyes

Sometimes different and many times the same

Front and back and in between too

Sometimes small and many times big

But then the time came it grew, it grew

Before the major one

Its significance overwhelmed

It took my strength

I became unhelmed

 

And the surgery to end it all

With more pain to follow

The pills, the pills

So much to swallow

Slowly the dispense as it takes its time

I want it a memory and not in the present

But I am reminded each day

Today it is another event

What lies in the future

It is unknown at this time

As in the past and today

There seems to always be a climb

 

The pain is here today

For this one thing I know

As the days become weeks

The pain will come and go

I don’t know

Preface –

For almost 2 years now, I have written about me; not just those events from the far and near past, but my personality, my feelings, my emotions and my thinking.  Yes, I have my days of good, that are then followed by days of bad.  What do I mean by this?  I have always revealed my weakness and along with that my strength.  Recently I am weak and struggling and I pretend to you and others that I am fine and I am strong.  But, right now I am not.  And because of this, I become that other me; that mean me – that I try to hide from others except the one that matters the most.

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I voice recorded the following words yesterday and document today for all to read – especially the one that matters the most –

I have the last few days been a little down, a little angry and upset.  And, as usual because of who I am, I take it out on Gary – I am a mean person.  I am not respectful to him, even after he puts so much effort into helping me out, I disrespect him – I am mean to him, flat-out mean.  I went to the doctor the other day and the recovery is going fine and he (the doctor) spoke of because of some Stage 4 Cancer; I don’t remember what exactly what we were talking about, he spoke of a patient he had that went through the same surgery as I did and within a couple of months he (the patient) died because the cancer had spread.  Not necessarily what I wanted to hear, but, um – then I spoke with my Oncologist the week before who talks about all her patients being terminal; once again not what I want to hear.

So, I have aches and pains and other issues that bring me down and I think to myself; are these pains associated with cancer spreading or they a result of my surgery and I am still recovering; or are they result of inactivity on my part because I am restricted to a certain extent to exercise and being more active?  I don’t know, I don’t know.  And that is what brings me down; I don’t know.

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Uncertainties right now in my life are majority and certainties are the minority.  And sometimes this gets to me.  And my optimism and positiveness results in negative and pessimism.  That brings me to just not wanting to try anymore, just forgetting about it all: and just like screw it.  I don’t want to deal with it, I just don’t want to move on; I just don’t want to move.

But, then there is Gary, who continues to put a great deal of effort into helping me, not just me physically, but you know preparing for the future and dealing with doctors and other things associated with my health.  And he does this it on a consistent basis and I don’t always, um, you know recognize him for it; because I am dealing with my own stuff.  I make it about me, it is always about me; and so, this is what it is about today.

‘My Personal Hell’ (Reader Discretion Is Advised)

I wrote this post over a year ago, and never published it because I felt at the time it was too personal.  Since that time, my early cancer treatment resulted in Stage 4 Bladder Cancer and a major surgery to remove my bladder.  Since that time, I have written other posts that were sensitive in nature.  Since that time, now I have nothing to hide.

Written February 16, 2016 –

wikepedia.org uses these words to describe Hell; I also use these words plus others –

Agony, Torture, Pain

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This post will be very personal in nature and will expose my thoughts that you may not want to read.  Stop reading at any time you feel uncomfortable – I understand.

A week ago I had a tumor removed from my bladder.  After the tumor was removed I had a catheter inserted into and through my penis into the bladder to help it drain urine and to also flush out any remaining pieces of tumor and any blood clots that had formed.  The catheter used on me is a ‘3-way catheter for irrigation’, therefore it was a very large catheter in circumference.  Upon having it removed, which I thought was bad enough; I am experiencing the usual pain and burning when peeing.  But the pain and burning is nothing compared to what I experience on a nightly basis since having it removed.

I do not look forward to sleep, as I know upon the many times I wake during the night, waiting for me is ‘My Personal Hell’.

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Let us review what takes place upon waking from sleep for a typical male.  goaskalice.columbia.edu has the following –

Contrary to what many believe, waking up with your flag at full mast is not caused by urine buildup in the bladder. Morning erections are technically nighttime erections (or Nocturnal Penile Tumescence) which happen three to five times per night. They usually pop up (pun intended) during periods of Rapid Eye Movement (REM) sleep (when most dreaming occurs) and last around 30 minutes each. Unrelated to dream content, they are both common and completely normal and men older than sixty years may even have them during non-REM sleep.

Yes, I am a normal man in that I experience this normal body function.  But less than a week after having a very large tube inserted and removed from my penis, this normal body function is now an experience that brings me to tears.

The last several nights, I have cried more than I ever have in my entire life.  During these normal body function times, the fire, torment, punishment, agony, torture and pain I feel is so overwhelming, I plead with God to let me die.  I am weak, I cannot handle the pain, my life will never be the same, please God, let me die now.

I am tired as this is my new nighttime ritual.  How long will it last, how long will I last.  I am tired not only due to the lack of good sleep, but the emotional toll it is taking on me.

I am down and I am sad and I am frustrated and I am mad.  I try to stay hopeful and positive for the future – but it is difficult.

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It is difficult because every night I do not look forward to sleep – because waiting for me is ‘My Personal Hell’.

(This will never be an issue again.  As many of you know, my most recent surgery removed not just my bladder, but other organs that now prevent me from experiencing Nocturnal Penile Tumescence.  Lucky me!)

the next 9 days

It is Saturday and this coming Monday will be 1 week before I will undergo a major surgery.

When I began this blog back in 2015, the purpose was to write about me, my life, my experiences and those events that have shaped me into who I am today.

I have OCD and therefore need spreadsheets, outlines and formats.  I am not a spontaneous person; quite the opposite – I need a plan.

So, my plan involved an outline of topics and subjects I would post on a particular day.  This changes some due to holidays, birthdays, blog anniversaries, etc.: I have done well at keeping this format.

This plan is changing some for the next couple of weeks because a week from Monday I will undergo a major surgery.

These past several weeks were tough and this week will be tough and the weeks to follow will be tough.

Most of my posts for the next 9 days are about events of the past several weeks, about my current feelings and about my future after surgery.  I write ‘Most’ because next Friday is my monthly anniversary post, and those posts are as you know ‘different from the usual posts I write.’

Let’s start with the past several weeks –

In my post ‘a walnut-sized gland’, I wrote that I started feeling pain and discomfort in my abdominal and pelvic region.  My Urologist Dr. P. thought it may be Prostatitis, because blood work and a CT Scan resulted in nothing out of the ordinary.  I was put on antibiotics and pain medication.

In my post ‘to whine some today‘, I wrote that Dr. P. removed my ureteral stent and found a new small tumor in my bladder.  My pain and discomfort had increased and strong pain medications were helping me get through each day.

This is what occurred last week –

Because Dr. P. specialty does not include pain management and he was unsure what is causing my pain, he suggested I see my Oncologist Dr. D.  This appointment was Wednesday of last week which resulted in a MRI on Thursday and a follow-up appointment on Friday.

Why have the MRI?

The first appointment with my Oncologist Dr. D. was to discuss my recent visits with my Urologist Dr. P. and the pain I was experiencing.  Her first impression is that my cancer may have spread to my nerves.  She indicated the symptoms I am experiencing she has seen before.  My follow-up visit with Dr. D. this past Friday was to discuss the results of the MRI which resulted in displaying nothing out of the ordinary.  Do the results indicate I do not have nerve cancer?  No, cancer can be in the nerves, just not large enough to detect; not yet anyway.

So, what is next?

A PET Scan is requested and hopefully will occur this next week to see if anything out of the ordinary can be found; then a follow-up visit with Dr. D. on Friday.

Thursday I have my pre-surgical appointment at the hospital where my surgery will take place.

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to whine some today

I honestly try not to publish posts with me whining.

But, that is exactly what this post is about.

I am going to whine; but as I whine, I remind myself there are others who have it much worse than I.

What is ‘it’, you ask?

Anything in life that causes pain, suffering and agony.

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You may remember in my post ‘a walnut-sized gland‘,  I wrote about experiencing pain starting prior to my cruise in December that progressively became worse.  My Urologist Dr. P. thought it might be a prostate infection and prescribed antibiotics and pain medication.

My pain continues and at times has become worse.  If the prostate is infected, it certainly is taking its time to reduce in size and in turn reduced my pain.  Dr. P. wanted to see how I was managing and so I had a follow-up visit with him last week.  The visit also included Dr. P. removing the urethral stent from my body.  There are two methods to remove the ureteral stent; one involves a surgical method that is scheduled in advanced and the other involves a procedure that I have grown accustomed to but still do not look forward to.

I have lost count now, but there I am last week and once again having a medical instrument inserted into my penis.  If any man ever tells you they enjoy having medical instruments inserted into their penis, they are lying.  Okay, so while Dr. P. is inside of me with his medical instrument that has a camera, he takes the opportunity to look around inside my bladder.  He indicates the opening of the ureter from my kidney looks very good.  You may remember this opening was blocked due to my cancer and resulted in much pain which is the reason for the stent to begin with.

Dr. P. also found a new small tumor in my bladder.  This is not surprising because my bladder cancer has a very high recurrence percentage; this is the reason to remove the bladder.

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Okay, so the ureteral stent was removed and now the bladder and kidney are causing pain as well as the prostate.  I continue to take antibiotics and pain medication – lots of pain medication.

Here comes the whining – for weeks now I am experiencing severe pain in my whole abnormal area.  I feel discomfort when sitting, standing and laying.  My nights are mostly sleepless and because of the lack of sleep and the pain, my thinking and concentration is affected.  Strong pain medications as well as other prescriptions are helping me get through each day.

I have shed tears these past weeks, not because of just the pain; but more about my quality of life.  I currently have no quality of life, I experience pain and discomfort each day and find no joy in anything.

In less than 2 weeks, this current pain will be gone because I will no longer have a prostate or bladder.  I just needed to whine some today.

The What Ifs

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The tearing of the minds
The tears, the pain, the heartache
The whys, the wanders, the what ifs

Minds are crazy and hateful and fearful and destructive
That one mind so complex yet so simple

The tearing of that mind
The tears, the pain, the heartache
The whys, the wanders, the what ifs

Bring forth the destruction, the death, the final breath
For he who loves but then hates

The tearing of his mind
The tears, the pain, the heartache
The whys, the wanders, the what ifs

The hiding of one is the prison of another
Stop the madness, stop the hurting

The tearing of my mind
The tears, the pain, the heartache of his
The whys, the wanders, the what ifs of both

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love is in the trying

A couple of weeks ago I published a post ‘School of Hard Knocks‘, for which I received many comments.  One of those comments was from Amanda Ricks and she wrote the following –

It is very hard at times to separate our own guilt over perceived past inadequacy as a parent and letting our kids have and work on their own stuff. i can relate. Just remember, “love is in the trying.” You always have tried your best and still are and that’s what counts.

I replied with the following –

Amanda, thank you for a very thought provoking comment – I mean that in a very good way. I never thought about it this way “love is in the trying”, this is a phrase I certainly will remember. Thank you for reading and commenting, always appreciated!

The babycenter.com website has an article titled ‘Sweet age-by-age ways to show your love to your child’ that begins with the following –

A $10,000 birthday party? Nah… Making children feel loved and special can be as simple as rolling around on the floor with them! Read on to find age-by-age suggestions.

The article’s suggestions to show you love your child only goes to age 8 years old.  Okay, that is fine, but what about after age 8 and beyond; in their 30s, you know adults!

Many of you know, I divorced when my sons were very young.  Son #3 was about 3 years old and the other two would be 5 years and 7 years old.  I was out of their lives fulltime at a very young age and since that time have tried to prove my love for them, to them in many different ways.  I have had internal struggles with myself and I have reinforced myself time after time that I did the best I could with the circumstances.  I feel at times my sons do not really care about me, they tell me they love me and I tell them I love them – I always have – since they were little babies.

I have tried to prove my love for them.  There was the showing of affection, the providing comfort, the gifts, the vacations and the financial assistance.  But as Amanda indicates in her comment, “love is in the trying”.

I think one day they may realize I tried to be a good dad and tried to prove my love to them.

You know I have cancer and have done plenty of research.  My hope someday before my time is up, whether it be near or far, I hear those words “Thanks dad”.

When I was younger my dad did not show affection, did not provide comfort, gave few gifts, few vacations and no financial assistance.  A couple of weeks ago I had a conversation with him and after we talked about my next surgery, he indicated he tried to be a good dad to me.  I responded you were and you are the best dad; you have taught me many good things.

I realize now, his love ‘was in the trying’.

my life right now

 

In my post ‘Good things require work‘, I wrote the following –

My nights are increasing in the lack of sleep I am receiving due to pain and discomfort, and I wake every morning tired, feeling lifeless with spirits down.  These difficult nights, the lower right back pain and the burning bladder are all taking a toll on my body and my emotions.

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In today’s post I write the following –

The sleepless nights are starting to hit me hard.  I think I am averaging about 4 hours of sleep a night, along with the pain.  The burning in my bladder is persistent and when I pee no matter night or day, the burning shoots from my bladder to my right kidney.  Upon waking in the mornings, I try to do a little stretching to help reduce the pain in my lower back.  The stretching does help my back feel better at times and other times it does not.  I cry about this new way of life I am experiencing.  The quality of life and the lack of happiness and lack of enthusiasm I have right now results in no motivation; results in nothingness from me.

I am just existing and accepting life as it is.  I keep telling myself, my life will be different several months from now and I believe it will.  But I also believe I will experience worse before I experience better.

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I try to remain optimistic, without being too pessimistic; I struggle every day because I need comfort that I am not receiving.  I am unsure exactly what that comfort is.  I talk with my mom and my dad and my sister and I tell them how I am feeling and Gary knows I experience pain every day.

I don’t know if I am wanting compassion, or comfort or something else that I am not currently receiving.  Part of me does not desire these things because I do not want people to really know how I am feeling.  I am just pretending to other people; telling them I am not feeling too bad, when in reality I am.  I am honestly miserable; I just hate the quality of my life right now.

The departing of ways with Dr. F. and the appointments in the future leave me with my own difficulties to deal with at this time.  I recently decided I needed to take medication that would help me and help my present life be better.  I hate taking medication, and I have always especially stayed away from pain medications.  But, I feel I have come to needing to take some type of medication at this time.

A couple of days ago, I started taking OTC medication for urinary pain relief and it has brought some relief.

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Mid-day I am taking an anti-inflammatory and evenings prior to bedtime I take a mild muscle relaxer.  These mild medications are allowing me some comfort in reducing pain and helping me to sleep a little better.

This is my life right now.

Good things require work

I recently read a well written blog post from my good friend Osyth over at Half Baked In Paradise.  The title of her post is ‘Good God (or The Devil) is in the detail‘, and I encourage everyone to take time and hop over to her blog and read her inspiring post.

I hope Osyth does not mind if I take a couple of her sentences from her outstanding post and use them here.  Osyth’s own written words –

Here’s the thing, we can all be decent just because we want to be decent.  It is absolutely in all our hands and minds and hearts to want to change and to stop being selfishly driven by our own needs and to accept that we are all particular and that none of us is a better particular, a more worthy particular than any other.

What I will bring to you is the detail of harmony, peace and tolerance – not things that just magically happen but things that require work.

In my video post ‘Have a Happy Day‘, I spoke about my aches and pains I am experiencing every day and my ‘bad’ mood I am in.  These aches, pains & ‘bad’ mood are affecting my motivation and patience and energy level.  But I continue to move forward not letting these difficulties stop me from trying to ‘Have a Happy Day’.

My nights are increasing in the lack of sleep I am receiving due to pain and discomfort, and I wake every morning tired, feeling lifeless with spirits down.  These difficult nights, the lower right back pain and the burning bladder are all taking a toll on my body and my emotions.  I am crying more in the mornings, not necessarily because of the pain, but more so because of the quality of life I am experiencing.  I think about the significance of my illness and think to myself; people either do not understand or do not care.

So the physical pain and the emotional pain are beating me down.  It is difficult for me to be in a good mood, to be happy, be grateful and thankful.  I feel none of these right now.

But then I read Osyth’s written words; that post and those sentences.  Reading her words, she reminds me “not things that just magically happen but things that require work.”  I am allowing myself to feel sorrow for myself, and this is okay for a while.  During this time of sorrow, I become selfish; angry and frustrated that those who should be interested in my wellbeing are not.  I know they are, and I know life, and I know I do not always receive that which I desire.

Osyth’s written words remind me, I will work on my motivation, my patience, being grateful and thankful for those that are in my life and the good things that I have.  These good things do not just magically happen.

And I continue to work on these good things again for another day.

Thank you Osyth for an outstanding post – one that enlightens me and benefits me – I am grateful.

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