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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Image1 Provided by: CMUSE

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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Image Provided by: Pacific Pain Medicine Consultants

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

Upcoming Weeks

In my post ‘The new confidence‘, I mentioned a new confidence with the new me that is allowing me to get out a little more.  I also wrote about the status of my lower back pain and the future follow-up appointments with my Urologist and Oncologist.

That post was published a week ago, and another a week has gone by and the recovery continues.

The lower back pain is lessoning some, in turn allowing me less disruption in the middle of the night during sleep.

Today and this upcoming next week should reveal perhaps what is to come in the immediately future months.

Today, I have an appointment with my Oncologist Dr. D. to discuss the possible involvement in a trial medication for people who have Stage 4 Bladder Cancer.  We will also discuss the options of where this drug would be administered; Dr. D.’s location or an advanced cancer center.  I have completed some research on the drug used for this cancer trial and ultimately will make an informed decision when the time comes.

Next week has two additional appointments.  You may remember I requested a referral request from my Urologist Dr. P. for a second opinion with another Oncologist.  Gary and I want to ensure we have all possibilities available to us to make an informed decision for my future care.  A second set of eyes from another professional will provide us with the assurance that we have all facts and options available to us.

Next week also finds me having another surgery follow-up appointment with my Urologist Dr. P.  Now that it is over 6 weeks since my surgery, from my point of view, my recovery seems to be going well.  I feel confident Dr. P. will agree with this.

As the temperatures here in Pensacola continues to warm up and the days become longer, the recovery will continue to proceed.  More walks will take place and I will continue to make visits to the gym for mild workouts to help build my strength back.

The upcoming weeks will help in determining what is to come in the months ahead concerning my healthcare and future plans.

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The new confidence

A week ago in my post ‘what comes next…‘, I wrote the following –

The appointment with Dr. W. was to discuss some issues with pain I am experiencing in my lower back.  I had this pain back prior to surgery and thought it was associated with all the other pain I was experiencing immediately prior to surgery.  The pain is constant and is at its worse in the middle of the night to the point, I am unable to move or get out of bed.  We do not believe the pain is associated to the surgery and could be caused from arthritis, or some other issue.  I hope to resolve this pain soon.

In today’s post, I write the following –

Another week completed and another weekend is upon us.

This past week I had no doctor appointments or other medical related activities.  The weather here in Pensacola was perfect this week and looks to be the same this coming weekend.

The recovery after surgery continues with my daily walks and other activities.

Not only am I recovering physically but also psychologically with regards to the new me.  Remember in recent posts ‘I struggle with the new me‘ and ‘Freakshows’, I wrote about my struggles with having a urostomy bag on the outside of my body.  As the weeks pass I am learning to cope and accept this new reality.  The initial uncertainty and apprehension are replaced with confidence and comfortableness.

The new confidence with the new me is allowing me to get out a little more.  Past weeks had me hesitant in going anywhere I did not have to go because of my fear of ‘leakage’ from what is now an extension of my body – my urostomy bag.  With different manufacture products tested by me; there were some trials and errors that took place and incidents that were frustrating and embarrassing.  Since surgery, a learning process has taken place for both Gary and myself with regards to the supplies needed and process of maintaining and replacing this new extension – my urostomy bag.

Beside my daily walks this past week, I did attempt to go to the gym for an extremely easy light workout; nothing strenuous at all.  Going to the gym gets me out into a different environment, which I need after weeks of being cooped up in the RV.  This also provides me with an opportunity to build my confidence level with regards to the new me.

The lower back pain I experience in the middle of the night has subsided some, but still persists in waking me in the middle of the night.  This nightly waking is then followed with me needing a change of position; therefore I sleep the rest of the night on a recliner.

In a couple of weeks I have follow-up appointments with my Urologist and Oncologist.  I mentioned in my post ‘what comes next…‘ the possibility of a clinical trial medication for Stage 4 Bladder Cancer and also the possibility of a second Oncologist opinion concerning my further treatment.

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oh, why not?

From theguardian.com article ‘How selfies became a global phenomenon’ –

It starts with a certain angle: a smartphone tilted at 45 degrees just above your eyeline is generally deemed the most forgiving. Then a light source: the flattering beam of a backlit window or a bursting supernova of flash reflected in a bathroom mirror, as preparations are under way for a night out.

The pose is important. Knowing self-awareness is conveyed by the slight raise of an eyebrow, the sideways smile that says you’re not taking it too seriously. A doe-eyed stare and mussed-up hair denotes natural beauty, as if you’ve just woken up and can’t help looking like this. Sexiness is suggested by sucked-in cheeks, pouting lips, a nonchalant cock of the head and a hint of bare flesh just below the clavicle. Snap!

There was a time, I never took selfies, why would I?  I do not participate much in Social Media except my blog here on WordPress.  My posts are then sent out via a tweet on Twitter.  I find I have no time for other Social Media platforms and honestly soon will most likely shutdown my Twitter account.  However, I will keep my WordPress blog going as long as I enjoy it and feel up to it.  What does this have to do with selfies?

There was a time, I never took selfies, why would I?  My blog began with me anonymous.  As the months came and went I became less intimated with expressing myself in words and as fellow bloggers began to read and comment, I felt a sense of comfort.  So, I exposed myself; some of you may remember my posts that slowly exposed me; and now I am totally exposed for all to see.

Now because I am exposed, I take selfies, lot of selfies.  How many is too many?  Most of the time my selfies do not come out the way I would hope for, so another is usually taken.  I now take lots of selfies; most of them of me alone, still many more includes Gary and sometimes Roxy.

Google “selfies meaning” and you receive the following –

sel·fie

ˈselfē/

nouninformal

plural noun: selfies

a photograph that one has taken of oneself, typically one taken with a smartphone or webcam and shared via social media.

“occasional selfies are acceptable, but posting a new picture of yourself everyday isn’t necessary”

I do not usually post a picture of myself every day, it depends on the topic of the post I am publishing.

This past Saturday in my post ‘what comes next…‘, included a picture of me.  When my post is about me and my health, I usually end it with a picture of me.  That post last Saturday, I used an older picture with no intentions.  That post indicated I had lost 22 lbs. of weight since my surgery; this is true, but the picture included is an older picture, therefore I may have misled some readers thinking the photo is the current me.

There was a time, I never took selfies, why would I?  But now, oh, why not?

This post is filled with a collection of selfies.  This last photo is the current me – me with 22 lbs. less weight.

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what comes next…

2 weeks ago in my post ‘my struggle with cancer‘, I concluded with the following –

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.

In today’s post, I begin with the following –

It is now almost 5 weeks since my surgery took place.  I have lost 22 lbs. in weight and though overall the recovery is taking place as expected, there are a few issues I am dealing with.  These minor issues cause some discomfort for me, but with medications I am dealing with them.  I continue to take some low dose pain medications and other medications to help me during my recovery.

This past week I had appointments with my Primary Care Manager Dr. W., Urologist Dr. P. and Oncologist Dr. D.

The appointment with Dr. D. resulted in her performing further research into my immediate future.  I could do a wait and see approach; meaning do nothing and every 3 months have tests run to see if the cancer has returned.  Another approach is a possible trial medication for people who have Stage 4 Bladder Cancer.  This trial uses the body’s own immune system to fight any cancer cells that may be present.  The downside is it could also fight the body’s good cells which could result in other issues.  Dr. D. could administer this or it could possibly take place at a center that specializes in cancer treatment.

I meet with Dr. D. again in 2 weeks and this will give her time to see if my insurance will cover this type of treatment.  She will also research to find cancer centers who can administer this type of trial treatment as well.  With this information, it will provide me additional choices to make an informed decision concerning treatment for my cancer.

My appointment with Dr. P. was a follow-up to my surgery and to check in on my recovery.  We also discussed him making a referral to another Oncologist for a 2nd opinion.  Gary and I feel a 2nd opinion is important to ensure I am receiving the best care possible and having all possible options available to me.

The appointment with Dr. W. was to discuss some issues with pain I am experiencing in my lower back.  I had this pain back prior to surgery and thought it was associated with all the other pain I was experiencing immediately prior to surgery.  The pain is constant and is at its worse in the middle of the night to the point, I am unable to move or get out of bed.  We do not believe the pain is associated to the surgery and could be caused from arthritis, or some other issue.  I hope to resolve this pain soon.

More to come in the future weeks concerning what comes next in my journey with cancer.

Recovery continues with aches and pains related to surgery still present, but a little less with each passing day.

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virtual spoons

The Saturday prior to my Monday surgery I published a video log post ‘Big Day Monday‘.  I received many wonderful comments including one that stands out because of my response back.  Fellow blogger and friend leggypeggy has been sending me virtual spoons ever since that post.

From that post, Peggy wrote the following comment –

A big thank you to you for sharing your journey with us. Also nice to see the landscape you will enjoy during your recovery. Sending virtual hugs and lots of love for smooth surgery and speedy recovery. And yes, be a good patient and the nurses will love you.

I responded with the following –

LOL, yes I know I need to be a good patient – I certainly need nurses loving me. When I feel bad and grumpy, I will think of you and the spoon on your forehead – that will remind me to be good. Thanks Peggy, yours and others support here is important to me. Have a great day!

Her response –

Oh yeah, remember the spoon! It must be a lucky charm. Should I send you one?

My response –

You can send a virtual spoon everyday next week!

Her response –

Consider it done.

So, Peggy sent me a virtual spoon every day the week of my surgery.

In my post ‘my struggle with cancer‘, again Peggy commented about the virtual spoon –

Glad they were able to explain ‘the knot’, but still strange that it happened. This improves the chances of being relatively pain-free as you more fully recover. Sending virtual spoons and hugs for your mental strength.

My response –

Thank you Peggy, physically I feel much better with still weeks of recovery ahead of me. I appreciate the virtual spoons and hugs for the mental strength because I will be honest, at times I am struggling. Thank you for your support and friendship.

Her response –

I figure that right now your body is stronger than the mind, so the spoons and hugs will keep coming.

Peggy continues to send virtual spoons today; a way for her to bring a smile to my face and remind myself that I can and will get through this and everything eventually will be good again.

I continue to heal and recover and have up and down days and adjusting to the new me.  I post every day and just like many of you, Peggy has a comment for me.  Many times, she lets me know she is sending me virtual spoons.  A little joke between her and I, but a reminder the spoon is a lucky charm – and she sends them to me.

She has indicated I should take a picture with a spoon on my forehead – so, here you go Peggy, this is for you.

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I struggle with the new me

Little over 4 weeks now since surgery, since the new me was created or updated from the old me.

Many of you know, I now have an urostomy bag on the outside of my body because I now no longer have a bladder.

These past weeks have me struggling at times, less with the physical part, though that can be challenging at times, but more with the mental part.   The changes to my body at times brings me to tears; what has taken place to me and how am I supposed to accept this?

As my body continues to recover and become stronger, I know too will my mind, my thinking and my attitude.

A couple of weeks ago in my post ‘my struggle with cancer‘, I updated you with the most recent information concerning my health and my cancer.  That post received many comments from you with your always welcomed support and encouragement.  Those comments, your comments have great meaning to me and bring me strength in more ways than you can imagine.

My friend Kat over at Time No Matter left me one of those strengthening comments –

IN my belief of healing and beating all odds…is first the positive attitude, and man do you have that one nailed down….your outlook on life up close and personal is so important to your healing….in my opinion of course, and its always right !!! lol second is your support group…you couldn’t be more supported if you were a pair of veins in good Ted hose…LOL you have a loving, caring, devoted husband, your personal family, Roxy, and then all of us…there isn’t a day that goes by your not in my thoughts !!!! We may have never met, but my friend I hold you near and dear !!! And then there’s your medical team…and I think you have a wonderful group of professionals that know their stuff….I know you feel the same as you have literally put your life in their hands and they are caring, loving, knowledgeable group of people…finally there is the sprit, social ideologies, we all believe in our own ways, no ones God, Goddess, Buddha, moon worshiper – whomever/whatever is better than someone else’s, but to me its important to be spiritual…and I know you are……you have cancer on the run….you are over a huge hurdle in your fight…..you’ve got this my friend….one day at a time…one moment at a time….danced in the sliver of a moon for you last night….sending you much warmth, love and moon beams……xxxxkat

I responded with the following  –

You bring tears to my eyes, because I know what you write is the truth. I have this past week have had my challenges mentally as I struggle to accept the new me and still the unknown that lies ahead. I find strength in your words and your friendship. kat, you are special – I appreciate you very much, thanks dear.

So, as you see from her comment and many others I receive, I have great support from you that brings great strength to me.  The physical strength is returning and with your help I know my mental strength will continue to increase as well.

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Freakshows

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Image Provided by: priceonomics.com

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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Image Provided by: priceonomics.com