Anniversary Announcement

Today is the 27th month of my blog!  My anniversary post is something different than the usual posts I write.

Me (2)

Nothing clever in this post today.  No going back to a different age in my life to see what was taking place.  No interesting facts.  Actually, nothing interesting at all.

What is this anniversary post about?

I decided today is as good day as any to make an announcement, after all it is my blog anniversary.  When I started this blog 27 months ago, my goal was to post every day and I achieved this goal.  Now it is time to change because my health is declining and I no longer have the strength and I need my rest – lots and lots of rest.

Starting next week, I will be post 3-4 times per weeks and not every day.  My plan is to post on Mondays, Wednesdays, Fridays and may be one weekend day.

I just need time to myself to take care of myself.

20170416_194313 (2)

Today is the 27th month of my blog!  My anniversary post is something different than the usual posts I write.

Dreaming with Color

My friends this past week I have had unexpected change in plans.

After my appointment last Tuesday with Dr. C., he decided to admit me into the hospital.

Since then, much has taken place and this weekend I have more family visiting.

I plan to post everyday – this is my goal.

For the next several days, I have a favor to ask.

I need some rest, some time to catchup on me.

Comments are disabled today.

Image1

Provided by: Inception Radio Network

While in the hospital and spending time by myself provides me time to think, dream, ponder, and reflect.

There is much to take place in the near future, and I will let you know what that is soon.

There is much to take in and think about and ponder about.

There is much to take in and dream about and reflect about.

image3

Image Provided by: WallpapersCraft

You make the sun shine brighter

My friends the last couple of days I have had unexpected change in plans.

After my appointment this past Tuesday with Dr. C., he decided to admit me into the hospital.

Since then, much has taken place and these next several days I have more family coming to visit.

I plan to post everyday – this is my goal.

For the next 3 days, I have a favor to ask.

I need some rest, some time to catchup on me.

Comments are disabled today.

I plan to post everyday – this is my goal.

I leave you with some lyrics and a song that make me smile.

Some lyrics from “Wake Me Up Before You Go-Go” –

You take the grey skies out of my way (do do)

You make the sun shine brighter than Doris Day

Turned a bright spark into a flame (yeah yeah)

My beats per minute never been the same

That Decision

In my post ‘Months not Years‘, I wrote the following –

Following my hospital stay, I had a visit with my Oncologist Dr. L. to discuss my options.  One option was to do nothing and the other option was immunotherapy.

Image2

Image Provided by: moffitt.org

Concerning immunotherapy; any type of positive results is only about 15% – meaning 15% of participants will receive some type of response.  The response would be the slowing down of the progression of cancer to other parts of the body and/or stopping or slowing down the growth of the cancer cells.

So, I asked Dr. L. the question; how many years would my life be extended, if there were a positive result?  His response was that we are talking about months, not years.

In today’s post, I write the following –

Tecentriq is the immunotherapy drug that I am receiving.  In 2 days, I will receive my 2nd immunotherapy treatment.  The current treatment plan involves me receiving immunotherapy through IV every 3 weeks.  Upon the completion of my 3rd treatment, a scan will be performed to help determine the effectiveness on my treatment.

image2

The results of that scan may not provide enough information to determine if the treatment is working or not.  Another treatment round may be needed to determine the effectiveness – meaning 4 additional treatments then another round of scans.  If no determination is made in late August, then October will be the next time to make a possible decision.

What am I referring to when I write decision?

Since my first clue there was something wrong with me back on September 4, 2015; much has taken place.  This journey started with a discoloration in my urine.  Friends who have followed me for a while, know what has taken place since then.  Through all the tests, procedures, surgeries, treatments and appointments, one thing has stayed consistent.

The one thing that has stayed consistent, will play a major role in that decision.

That one thing that stayed consistent is my cancer has been aggressive in spreading.  That decision will be whether to proceed with treatments or let the cancer take its course.

I will be honest; I have always been honest here on my blog and at times blunt and direct.  In a couple of months, 20170416_194313 (2)I will be making that decision. Currently my days are filled with pain, and little activity due to my health issues limiting many things I can do.  Many days I remain positive and hold on to a glimmer of hope this immunotherapy treatment will respond with positive results.   Then there are a few days; I am ready to stop everything and let the cancer take over and seal my fate.

Currently the positive days outnumber the negative days.  As the days come and go, the date for that decision nears.

The Phantom of the Pee

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

Image1

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

Image1

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.

image13