my shell

Me (2)

August 2nd of last year is the day Gary and I left Dallas, Texas for Pensacola, Florida to continue my treatment for cancer.  A week prior to leaving, I had dinner with my family that lives in Dallas and I wrote a post specially about my dad.

It was a year ago in that post ‘The shell of a man‘, I wrote the following words –

Later after dinner I was back home and my stepmom sent me a couple of photos she had taken earlier that evening of my dad, my older brother and myself.  It was not until I viewed those pictures, that I saw my dad in a different way.  His body, his shell is deteriorating; as if it is already decaying, already having life drained from it.  It saddens me to see him in this state, because I know he will be gone from this world soon.

In today’s post, I write the following words –

January 16th of this year, I had a major surgery that lasted 10 ½ hours to remove my bladder, prostate, lymph nodes and other male organs.  This surgery is the usual course of action to take when cancer begins in the bladder.  Bladder cancer easily comes back and easily spreads.  It was expected because of that surgery I would lose 10-15 lbs. of body weight.  Instead, I lost 23 lbs. of body weight and now 3 months later, I have lost more weight – for a total of 30 lbs. body weight.

I weigh less than my dad now, and like him, I find myself a shell of a man.  20170416_194313 (2)My bones ache and my intestines will never feel the same.  As I wrote about my dad almost a year ago, I now write about myself.  I feel my body is deteriorating; as if it is already decaying, already having life drained from it.  It saddens me to see myself in this state.

I hide nothing on this blog, my life from years ago and today is here in writing, pictures and videos.  I pretend to be nothing more than an average man, living an average life.

Less than 2 years ago, it was noticed and through a series of events that I never expected, I am now here today with Stage 4 Bladder Cancer.  This is my cancer, it does not belong to anyone else and it effects my body the way it wants to.  I do fight back with what I have available to me; from doctors to family to internal strength, a spouse that is always here for me, and to some sort of guidance from somewhere else.

I have no shame in displaying these pictures of me at my worse – my body – my shell.

I still do my best

I ended last Friday’s post ‘my character‘, with this quote –

Bad things do happen; how I respond to them defines my character and the quality of my life. I can choose to sit in perpetual sadness, immobilized by the gravity of my loss, or I can choose to rise from the pain and treasure the most precious gift I have – life itself.

Walter Anderson

In today’s post, I write the following –

Yes, bad things do happen; to all of us.

Friday of last week I had my first appointment with my new Urologist Dr. G.  This visit’s main purpose is for the continuation of care for my surgery I had 3 months ago.  Because surgery recovery is going well without complications, I will not be seeing Dr. G. on a regular basis.  Dr. G. is part of the Moffitt Cancer Center where I am receiving my Oncology services and chemotherapy treatment.  Because I am under the care of my Oncologist Dr. L., I would only see Dr. G. if there were an advancement of my cancer in my urinary system.

Due to the pain I have experienced since my surgery 3 months ago, I was referred to pain management at the Moffitt Cancer Center.  This week I had an appointment with pain management to discuss the possibilities of relieving my pain.  It was decided in upcoming weeks I will have 2 appointments to receive a Facet Injection in my lumbar spine.  The injection helps to reduce inflammation and provide pain relief.  I am hoping these injections will provide the pain relief I want so I can reduce or even stop taking pain medications.

Currently my pain management involves taking pain pills and other medications to reduce inflammation.  I perform as much activities as my body allows with somedays better than others when it comes to the amount of stamina I have.

Next week I have another chemotherapy treatment and the following week I will have appointments with a Neurologist and Ostomy Wound Care.  The Neurologist may also be able to help in finding the source of my pain and help in relief.  Remember back in January I had surgery to remove my bladder and other organs.  I now have an ostomy bag that collects my urine.  The opening in my abdominal area to divert my urine is called a stoma.  I am having a mild issue with my stoma and therefore an appointment with the Ostomy Wound Care will help with this issue.

My hope is in the next couple of weeks the pain will be under control without the continuation of taking pain medications.  Currently these pain medications cause much drowsiness and tiredness which results in limitations of activities.

I do not sit in perpetual sadness – but I do sit a lot due to tiredness.

I am not immobilized by gravity of my loss – I believe the energy level will come back.

I do my best to rise from the pain and treasure the gift of life – though difficult at times, I still do my best.

Bad things do happen, and it is how I respond to them that defines my character.

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The Phantom of the Pee

Most of us are familiar with ‘The Phantom of the Opera’; a musical with music by Andrew Lloyd Webber.

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I bet you are not familiar with ‘The Phantom of the Pee’; not a musical with no music.

Merriam-Webster has the following definition for ‘phantom’ –

1

a :  something apparent to sense but with no substantial existence :  apparition

b :  something elusive or visionary

c :  an object of continual dread or abhorrence the phantom of disease and want

2

:  something existing in appearance only

3

:  a representation of something abstract, ideal, or incorporeal

she was a phantom of delight — William Wordsworth

Google ‘Phantom’ and first on the list of results is ‘DJI Phantom Drone’, with the following descriptions –

The Phantom is a series of unmanned aerial vehicles developed by Chinese technology company DJI. It is widely regarded as the company’s flagship UAV line, as it is the most widely used and known product DJI has released currently.

Google ‘Phantom Pain’ and first on the list or results is the following –

Phantom pain is pain that feels like it’s coming from a body part that’s no longer there. Doctors once believed this post-amputation phenomenon was a psychological problem, but experts now recognize that these real sensations originate in the spinal cord and brain.

I current do not experience phantom pain, but I do experience phantom pee.  Have you heard of phantom pee?

Phantom pee is a real thing, very strange real thing and I do experience it on a regular basis.  I mentioned this to my Urologist Dr. P. and yes, this is a real thing.

As you know my surgery in January removed my bladder and prostate and other male related organs.  My urine is now removed from my body via a stoma into a urostomy bag on the outside of my body.  I no longer have control of my urination.

But I still have the feeling of needing to pee, but I can’t.

Anyway, very strange feeling when you have ‘that urge’ and you no longer can ‘relieve’ yourself.

So, although ‘The Phantom of the Pee’ is not a musical with no music, it is a real occurrence.

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

Touching your comments

It was January 16th when my 10 ½ hour surgery took place.

I wrote about strength I found within myself in my post ‘strength’.

In that post, I voice recorded thoughts the immediate days’ home after the hospital stay.

Here is another voice recorded thoughts now documented for you and about you –

Write a post about that first night after surgery I was still feeling lots of the anesthesia and under lots of pain medication.  And I remember feeling like I was in your comments.  I was in your comments; almost like I am walking around in your comments, the words you have left me.  Not just the recent comments, but the past weeks and months comments; the encouraging words and the supportive words; the words of love and the words of support and the words of encouragement.  It was as almost as I was walking through these comments from all of you, I was touching them and it was helping me with my strength; it was helping me say you are going to get through this because there are so many other people there – there are so many other people out there who are encouraging you and supporting you and praying for you and thinking about you.  And who are touching you in a way that you are going to succeed and you are going to be strong.  And that is what I was doing; I was walking through your comments; almost like a stage and all your comments are sitting there on this stage in big letters.  And I am walking by and I am actually touching them, touching your actual words and feeling them and experiencing them.  That is the only way I can explain it, that is the only way I can explain this dream or hallucination or whatever it is I was experiencing at the time.  But I really truly felt that, that my friends helped me so much – I really, really do believe that.  I know it took a lot for me to deal with my surgery and the feelings afterwards, but I really truly feel that experience, that hallucination or dream or whatever was a big part that started helping me on a good start, on a good note to start my recovery. 

Thank you for always supporting me and encouraging me through your words and comments.

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Freakshows

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The priceonomics.com article ‘The Rise and Fall of Circus Freakshows’ begins with the following –

In 19th century America, gawking at people who were born with deformities was not only socially acceptable — it was considered family entertainment.

P.T. Barnum made millions by capitalizing on this. His “freakshows” brought together an amalgam of people considered to be curiosities — bearded ladies, tattooed men, the severely disfigured, and the abnormally short and tall — many of whom were unwillingly forced into the industry as young children.

In my post ‘I remain grateful (Reader Discretion Is Advised)‘, I wrote the following –

In 5 days, this coming Monday, I will no longer have control of my urination.

Let me be honest, one more time, I have always been honest here on my blog and at times direct.

In 5 days, this coming Monday, I will have a stoma or also referred to as a urostomy, an ileal conduit or urinary diversion.

I will have a pouch or bag on the outside of my body to collect my urine.  I will no longer have control of my urination.

In today’s post, I write the following –

In yesterday’s video post, I mentioned the physical strength is slowly becoming better, but at times my mind is weak when dealing with the changes made to my body.  As with the physical strength, I know the mental strength will increase as well.

A comment on yesterday’s post from my friend and fellow blogger Osyth included the following words –

….your psyche is bound to ricochet back and forth but you are endeavouring and doing your best and that is all you can ask of yourself.

This is a great description of what my mind is going through during the past several weeks and most likely weeks to come.

I am home recovering from my surgery and at times my typing continues to be a little slow and at times the computer is limited because I need to rest.  During rest sometimes I will voice record my thoughts.

About a week ago, I voice recorded the following –

It is in the afternoon and I decided to take a nap and I lay here by myself because Gary is at the gym.  I feel the urostomy bag touch my waist area and I start to cry.  I cry because I do not feel – I no longer feel whole, I feel defective.  I feel like a freak.  I feel unattractive and this is just something I have to become accustomed to.  But these are my feelings right now.  I know there are many people in the world that have bags on the side of their bodies to collect urine and other body waste and maybe other things I don’t even know about.  But this is me, this is new to me and though my recovery from my surgery is going well, my physical body and the emotional part of it is going well also – I still have my moments.   I still have my moments where I just feel different, I don’t feel myself. 

I feel like a freak.

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strength

Only 3 weeks ago, I had a 10 ½ hour surgery and was in the hospital for 11 days.  During those hospital days, I had very little physical strength and spent most of my time doing nothing except resting and recovering.  Once home in those first few days I felt I needed to document some thoughts that were swirling through my head; they were important to me.  Those first few days back home I spent little time on the computer and so I voice recorded my thoughts.

The following are words I spoke and recorded one of those first few days back home –

So this is a post about strength – strength that I did not know that I had.  I made my 11 day hospital stay; I made it through being positive, being optimistic.  For those first two nights after a very long surgery, for the first night I was awake for a little while, and thinking to myself; I don’t know how I am going to get through this, but then I fell back into a deep sleep.  And the next night, same room and still in the same position because I have not moved I then thought to myself again; I don’t know how I am going to get through this.  But I kept telling myself, I will, I have the strength within me, I have the perseverance and the positiveness that I am going to get through this and I am going to do well during my recovery.  And during the whole recovery for those nights and more after I did that – I did that.  Certainly I had my aches and pains I had to deal with; and pain medications were there and other medications were there to help me along the way and I did what was asked of me and I found the strength in me that I never, ever thought that I had.  Seriously I never thought I had that strength in me.  But it was there, it was waiting to be used during a time when I needed it the most.  So, my post is about strength; I think that it is probably in all of us, it is in all of us somewhere.  And when we need it the most, I think we all can reach deep down and grab it and use it and get through any difficult situations we may be going through. 

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my struggle with cancer

This past Monday was 2 weeks since my surgery and my aches and pains from surgery are slightly reducing and my physical strength is slowly increasing.  A few days ago, I had a follow-up visit with my Urologist Dr. P.; he indicated the recovery is progressing as expected and he would see me again in 3 weeks.

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

One month ago, in my post ‘to whine some today’, I wrote about my Urologist Dr. P. removing my ureteral stent and finding another small tumor in my bladder which is not surprising because my bladder cancer has a very high recurrence percentage; this was the reason to have my Radical Cystectomy surgery.  In that post I whined about the increasing pain and discomfort I was experiencing and the tears that flowed from my eyes due to the poor quality of life I was undergoing at that time.

A week prior to my surgery in my post ‘the next 9 days‘, I wrote about my visit with my Oncologist Dr. D. to discuss the pain I was experiencing.  She indicated at that time her first impression is that my cancer may have spread to my nerves.  Pain medications were increased due to the amount of pain I was experiencing and another round of imaging tests were ordered.  The CAT Scan, PET Scan and MRI resulted in nothing out of the ordinary.

Today, I wanted to provide everyone an update on what is taking place with regards to my cancer.

My surgery took 10 ½ hours to complete.  Dr. P. indicated part of my bladder had somehow embedded itself into my large intestine; he had to take extra time to delicately separate the two.  In the previous month when I was experiencing my extreme pain I would complain about having a ‘knot’ in the middle of my gut.  With the imaging tests coming back with nothing out of the ordinary, Dr. P. said this was most likely the cause of that ‘knot’ feeling and because today I no longer feel the ‘knot’, I would agree.

Prior to leaving the hospital last week, I received my Pathology report from my surgery; the results indicated my cancer had spread.  My Radical Cystectomy removed several organs and in males the seminal vesicles are also removed.  My cancer had spread into the seminal vesicles and these glands have many nerves running through them.  This most likely was the reason for the extreme pain I was experiencing prior to surgery and now that pain I no longer feel.  The Pathology report also found the cancer had spread into other lymph nodes in the pelvic region; the surgery also removed all lymph nodes in my pelvic region.

Bottom line is Bladder Cancer spreading to other parts of the body can be difficult to treat and the 5-year survival rate is very low.

While in the hospital, I spoke briefly with my Oncologist Dr. D. and will meet with her again in 2 weeks to discuss the options available in moving forward with my struggle with cancer.

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T.G.I.F.

This past Monday, I had surgery.  Prior to the surgery, when I scheduled my posts for this week, I had no idea how my recovery would be going.  I felt I would need all week for some recovery before I would post about my status.  My plan is to update you on how I am feeling and the status of my recovery in the next few days.

For today,

Thank God It’s Friday

Back in 1978, there was a movie release ‘Thank God It’s Friday’.

Lots of good music and booging taking place in this movie.

As you know I have published a few Boogie Blogging posts and will again this year.

Until my next Boogie Blogging post, enjoy the video.

 

I will be in ICU for a couple of days and then the recovery begins.  

I appreciate everyone taking the time to stop by, read and leave many wonderful comments.  Due to my surgery and not knowing how I will be feeling; I am disabling the comments on my post today.  I need a few days of recovery and to grow accustom to the new me.  But know soon I will have comments enabled and I will be ready to respond to each one of them. 

Recovery has started

3 days ago, I had surgery – 3 days ago, I had a Radical Cystectomy – 3 days ago, I had parts removed from my body.

Per webmd.com –

Radical cystectomy is the removal of the entire bladder, nearby lymph nodes (lymphadenectomy), part of the urethra, and nearby organs that may contain cancer cells. In men, the prostate, the seminal vesicles, and part of the vas deferens are also removed.

I am not a good patient and I hate hospitals; I am doing my best and the recovery has started.

As I spend time in the hospital I remind myself the pain will pass and although I am missing parts, I am still me.

Life today may not be wonderful and full of rainbows, but it will be again soon.

This song by Israel Kamakawiwo’ole is a favorite of mine, it warms my heart and brings a smile to me.

 

I will be in ICU for a couple of days and then the recovery begins.  

I appreciate everyone taking the time to stop by, read and leave many wonderful comments.  Due to my surgery and not knowing how I will be feeling; I am disabling the comments on my post today.  I need a few days of recovery and to grow accustom to the new me.  But know soon I will have comments enabled and I will be ready to respond to each one of them.