Look Forward

Friday a week ago, I met with my Oncologist Dr. D. to discuss the option for a possible trial medication for Stage 4 Bladder Cancer and possible Cancer Centers that could administer the trial.  At this time, research on my part is taking place with regards to my future cancer care.  Because I am currently recovering from my recent surgery, no future possible treatments will take place until after the next round of imaging tests; these will take place next month.

This past week I had a routine appointment with my Urologist Dr. P. to discuss my surgery recovery.  Dr. P. is pleased with my recovery and we will have another follow-up appointment early April.

I also met with another Oncologist Dr. A. for a second opinion at a Cancer Center here in Pensacola.  Dr. A. will meet with peers on his facilities tumor board to discuss possible options.  He did indicate that one possible option is radiation.  At this time, no decision will be made until after imaging tests are conducted next month.

20160806_075118

This past Tuesday in my post ‘Seeking a Home Base’, I mentioned Gary and I are searching for a location to plant roots and use as our home base.  A trip is planned in a couple of weeks and we will be visiting different locations that best meet our needs.  The trip will also include visiting a major Cancer Center located in Tampa, Florida.  A referral is submitted and a consultation appointment is in place.

Currently there is much planning taking place for a future move to a more permanent location and finding a new medical facility for my healthcare.  As indicated a couple of days ago in my post ‘Exactly 1 Month‘, I am feeling good with my recovery.  I will admit though, I do not feel excellent as I am having difficulties with some pain and other minor issues.  I am not sure if they are related to the surgery or my cancer diagnoses and if over time I will overcome these minor issues.

I want to feel great every single day, and honestly, I do not.  7 weeks ago I had a very major surgery and I have to remind myself the recovery will take 2-3 months.  I will be starting my 3rd month of recovery very soon and when it ends; my hope is the minor issues come to an end as well.

I have not felt great in a very long time and I miss those days when I felt healthy, active and invincible.  I was truly happy those days and I feel they are gone for good.  Am I being a little pessimistic and down?  Yes, I am.

What do I have to look forward to in the coming weeks and months?

More recovery, a possible new location and new doctors with new ideas.

I hope also, I can look forward to feeling healthier, active, and invincible once again.

20160814_090744_001

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

My Purpose in Life?

20160810_182204-2At times I will write a post and not finish it and leave it alone until a later date.  This post I wrote almost a year ago, but because of changes in my life it seemed no longer relevant.  Lives can change dramatically in a short period of time and along with the changes so too can our thinking, our believes and attitudes.

A year ago, I had a minor surgery to remove a tumor from my bladder.  At that time, it seemed harmless and nothing significant would come from it.  I was wrong and this past year’s events I never imagined would take place.

The following words I wrote almost a year ago, when my life was healthier and I was looking forward to a future filled with adventure and fun –

Many times I have asked myself ‘What is my purpose in life?’

image1

Image Provided by: SlideShare

If you have been reading about me for quite a while, you know about my early struggles in life with major depression to the point of attempted suicide.  It took over a decade to overcome this depression that wanted to kill me.  My purpose at that time was to overcome it and that I did.

I continue with struggles today, but certainly not to the extent when I was a much younger man – but I am far from perfect and not the man I want to be – I still struggle – I am a work in progress.

Again today I ask the question ‘What is my purpose in life?’

A little more than a year ago, Gary and I were in Mexico exploring a possible location to live.  While there an event took place that upon our return home, I documented.

These are the words I documented –

How can I be responsible for supporting and helping someone when I have my own struggles?  Several weeks ago in Mexico, Gary and I were with expats.  I watched Gary as he told a story – and I see his mannerisms, his facial expressions and the words he used to tell the story – I saw his mom.  It reminded me that maybe he will be like his mom, telling the same old stories, having the same struggles every day.  He may exhibit the same emotions his mom goes through – anger, frustration, nice, rude, impatient, not understanding.  It has been difficult for me spending time with his mom due to my lack of patience.  I have learned some patience as a result of being around her and that is a good thing.  I have more to learn, I want to be there for Gary, I want to be caring, compassionate and understanding.  These are areas I fall short in, but feel I can I gain more of these traits.  Maybe this is my purpose in life to learn these traits: understanding, listening and being there for Gary.  I believe my life is about struggling and learning and being the best person I can be. 

image2Gary’s mom has dementia and she struggles daily and sometimes I see her personality in Gary.

Back to today, both Gary and my life has changed a great deal this past year.  I no longer think about what my purpose is in life.  I do believe part of Gary’s purpose may be to help me during my difficult time.  And who knows, maybe someday when I am better it will be my turn to help Gary during his difficult time.

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.

20160810_182204-2

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.

20161212_160132

the day my life changes

Today is the day, the major surgery takes place and the day my life changes.

I will remain grateful as there are others in the world who have much less than me – who have nothing compared to me.

But my body will change and I will change and my life will change.

 

Today is the day, the major surgery takes place and the day my life changes.

I will remain humble as there are others in this world who are experiencing much more than me – much worse than me.

But my body will change and I will change and my life will change.

 

Today is the day, the major surgery takes place and the day my life changes.

I will remain appreciative as there are others in this world who have no others to support them – who have no one there for them.

But my body will change and I will change and my life will change.

 

Today is the day, the major surgery takes place and the day my life changes.

I will remain hopeful as there are others who have less to look forward to – who have nothing positive in their future.

But my body will change and I will change and my life will change.

 

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. 

20161212_160132

My hotchpotch

In my post ‘the next 9 days‘ I wrote the following –

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.

In today’s post, I write the following –

9 days counting; I feel you are tired of reading posts about this upcoming surgery and my feelings and emotions.  But I had to get it out of my head and onto paper before tomorrow.

So, today I am wrapping-up different topics into one post – my hotchpotch.

image1

Image Provided by: Food52

Hotchpotch #1 –

Reminders –

Because I have a personal goal to post every day, next week is no exception.  Next week’s posts are all scheduled and ready to publish; expect a lighter week with regards to subject and topic.  Starting tomorrow, my posts will have the comments disabled.  My hope is that I will be back ready to respond to your wonderful comments next Saturday – time will tell.

Hotchpotch #2 –

Tomorrow is surgery day.

Tomorrow is not just an important day for me, it is for others as well.

Tomorrow, Monday January 16, 2017 is significant for the following reasons –

A Federal Holiday –

Martin Luther King, Jr. Day is a federal holiday in the United States honoring the achievements of Martin Luther King, Jr. – the chief spokesman for nonviolent activism in the civil rights movement to end racial segregation. It is observed on the third Monday of January each year, which is close to January 15, the King’s birthday.

RV Friend Surgery –

While temporary living on the Naval Air Station Pensacola RV park, Gary and I have met many wonderful people we now consider friends.  One of these friends is having surgery tomorrow as well and at the same hospital as me.  Who knows, maybe our paths will cross in the surgery prep room.

Stepmom’s Birthday –

For no particular reason; I do not believe I have ever mentioned my stepmom here on my blog.  She is very important to my dad and very important to me.  My stepmom is much younger than my dad and not too much older than me.  My dad and stepmom are married for over 30 years now and tomorrow is her birthday.  My stepmom is 18 years younger than my dad and 9 years older than me.  My stepmom celebrates her 65th birthday tomorrow.

20150420_183112_001

Image Provided by: spearfruit.com

Hotchpotch #3 –

I wanted to publish another post before tomorrow of the importance of my caregiver Gary.  I ran out of time and days and his post will wait for a few weeks.  Let’s just say, in the coming months, I will need him more than ever – and it is comforting to know, he will be here for me.  I am fortunate, lucky, blessed to have Gary in my life.

image4

Image Provided by: Meaningful Ideas

Hotchpotch #4 –

I am fortunate, very fortunate in my life – a life filled with joy, sadness, certainties and unknowns.  I consider myself lucky: I do believe I have much more to look forward to – many years to come of travels, making friends, visiting family, celebrating, uncovering, and most importantly living.

image3

Image Provided by: Jo Abbott I Graphic Designer

too many variables

Several days ago, in my post ‘the next 9 days‘, I wrote about having an appointment with my Oncologist Dr. D. last Friday.  That appointment was to discuss the results of my MRI I had the previous day and the future plans regarding the current pain I am experiencing.

Before I proceed, let me fill you in on some details about my current health.  I have Stage 4 bladder cancer and have an upcoming major surgery planned and past posts have me explaining the significance of my cancer and my upcoming surgery.

The significance of my cancer is the survival rate after 5 years is slim.  The significance of my surgery is to remove the source of the cancer because it has a very high percentage rate of coming back.  In fact, it already has – even after 12 weeks of chemotherapy last year, there is already a new tumor in my bladder.

image3

Image Provided by: of.sucrap.com

Before I proceed, let me fill you in on some details about Gary.  He retired from the United States Army as a Lieutenant Colonel after serving 22 years.  As a Medevac helicopter pilot, he has commanded others during times of crises and he also has held positions of Comptroller overseeing military hospitals.

Gary’s military commander experiences inspire him to have a strong personality and at times he can be a little dynamic.  This background also aides him in taking control of situations and being prepared as much as possible.  With his comptroller experience; he likes numbers and working with those numbers in various equations always end with a precise exact result.

20161212_155659

Gary has been by my side each day, going with me to doctor visits and he sees the pain I have experienced.

Last Friday the appointment with Dr. D. had Gary asking questions during a time of crisis, looking at various equations and wanting a precise exact result.

Dr. D. is unable to provide some answers and a precise exact result Gary wants.  She did however provide her view based on her expertise about my cancer and my future.

The appointment last Friday had Dr. D. indicating the cancer may have spread to my nerves based on the information I had provided her concerning my recent pain.  My cancer has already spread to my abdominal lymph-nodes and there is a new tumor in my bladder.  The cancer could be elsewhere now, but too small to detect.

Based on my current pain and the significance and type of my cancer, the future certainly holds some uncertainties.

Last Friday, we are still in Dr. D.’s main area where the patient rooms are located and before leaving I had to make a restroom stop.  Upon my return, Dr. D. has her hand on Gary’s shoulder comforting him as tears flow from his eyes.

Image1

Image Provided By: spearfruit.com

He wants to command a crisis that is not in his control and he wants precise exact results for an equation that has too many variables.

He wants me to be well, happy and out of pain.

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.

Me (2)