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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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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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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expectations

As usual the month of December rushed through with a fury and if you blinked, you missed it!  Christmas and New Year’s Day came and went, and before those holidays; Gary and I took a cruise to the Eastern Caribbean.

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Last week in my post ‘to whine some today‘, I let you know of my follow-up visit with my Urologist Dr. P. that resulted in my ureteral stent being removed.  During that visit, pre-surgery documents were signed and Dr. P. made time for Gary and I to ask questions and discuss details and expectations of my surgery that will take place a week from tomorrow.

To review; my upcoming surgery is Radical Cystectomy, please read my post ‘My Message‘, as it includes detailed information about the surgery.

Here are some expectations concerning my upcoming surgery –

The surgery is performed using robotic assistance, but if issues arise a traditional ‘open’ surgery would be performed.

Surgery could take up to 8 hours to complete.

Once surgery is complete, I will be in ICU for several days.

I will be in the hospital up to 10 days or longer if issues arise.

10-15 lbs. of body weight loss is likely.

A long recovery of 2-3 months will take place.

How do I feel about this surgery, the recovery and the change in my life?

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I have many mixed emotions leading up to this surgery.  I think back when this all started over a year ago, when I noticed a discoloration in my urine.  This was followed by a diagnoses, blood and imaging tests, procedures, 2 minor surgeries, more blood and imaging tests, more procedures, chemotherapy, still more blood and imaging tests and procedures and many, many days of experiencing pain.  The pain continues today and the upcoming surgery will end the current pain only to have me begin experiencing new pain.  The surgery pain should be short lived, but the recovery will be much longer.

For the rest of my life, I will have a urostomy bag on the outside of my body to collect urine.  This entire concept will be something I will grow accustom to over time.

I will have a period of recovery not just physically but also psychologically and emotionally.

With this surgery, my body will have less organs and a new way of life will begin.

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look back

As this year comes closer to an end, I look back at post excerpts from this past year –

Urologist, I need to see you!

My new doctor’s visit was last week and for my urine sample; I provided a sample that was extremely yellowish brown with the largest blood clot I have seen.  This scared me a little!

My Urologist: Dr. F. –

The visit with Dr. F. involved me discussing my symptoms and the result of a hospital visit involving a CT scan I had last month.  He indicated I most likely have a tumor on my bladder and it would need to be surgically removed. 

it’s not a dream

The cystoscopy took place yesterday and the results are I have bladder cancer. 

how I feel and if I can pee

Before I respond, let me update you on my condition.  The bladder tumor was removed and Dr. F. indicated it looks superficial, meaning on the surface of the bladder.

Good News outweighs Bad News; for now

The bad news is that the cancer can easily come back.  Every 3 months for the next couple of years, I will be visiting the urologist and having a scope performed to search for cancer that may grow back. 

The next appointment with Dr. F.

In the past month I have experienced increased burning during urination and in my bladder.  Yesterday I passed a blood clot.  Does this indicate the cancer has returned? 

Dr. F. Follow-up

Dr. F. indicated some cancer had returned and also I have quite a bit of scare tissue from my last surgery in February. 

in a pickle

Across the room I was in, is a small enclave that has desks and computers.  I could hear Dr. F’s. voice and I heard the words “Terry is in a pickle.” 

I will be there soon, Pensacola

At this point, I have no date for the next surgery.  You know the one; where my bladder is removed.  At this point in time, I am assuming I will be having a radical cystectomy.

The roadmap to remove cancer

Dr. P. informed me that the cancer had spread into my abdominal lymph nodes. 

Stage 4

Yesterday, I met with my new oncologist Dr. D. and we discussed my health history and the current condition regarding my cancer.  Upon reviewing my recent CT scan and the related information from Dr. P., she indicated to me my cancer is stage 4.

The number 12

Chemotherapy will begin this Thursday and continue for the next 12 weeks.  Today, I am having a ‘port’ inserted into my body. 

The lab experiment

These scans should help to determine if the nodules on my lungs are cancer or not.  The nodules are small, therefore cannot be biopsied and these scans should help with this determination. 

Bacon Grease

The immediate days following my 2nd chemo session were not too bad as I am handling the chemo better than expected and hope this trend continues.  The nausea is kept to a minimum, basically non-existent; to a great relieve for me.  I am fatigued the immediate days following my chemotherapy treatment requiring me to be less active than I would like to be.  

Where is me?

This cancer is beating me down right now and is taking a once happy active person to someone who is unrecognizable to me. 

those around me

Today I sit for hours taking in those around me.  Today I sit for hours viewing those near to me.  Today I sit for hours receiving chemotherapy amongst others; those around me.

6 weeks remaining

As the weeks continue and I arrive closer to my end date with chemotherapy, I look ahead to unknowns that soon will reveal themselves to me.  Uncertainties will soon be certainties.  Questions will be replaced with answers. 

wear-down

Chemotherapy is kind to me in that I am not experiencing many other side-affects.  But the tiredness, it is hitting me hard; very hard. 

wait and see approach

More than likely the imaging tests will involve another PET Scan to help determine the possible outcomes including complete removal of the cancer in my body, the partially removal of cancer or no effect at all. 

the importance of today

Today I am receiving my last treatment of chemotherapy.

– the time has come

My CT Scan took place this past Tuesday and today I have an appointment with my Oncologist Dr. D. this morning to discuss the results.  The most recent CT Scan will be compared to the previous imaging tests that took place prior to my chemotherapy treatment. 

In today’s post –

Surgery to remove my bladder is a little more than 2 weeks away. 

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The shift continues

December of last year, I wrote a post ‘Shift in My ‘Time Continuum’‘.  I wrote that a couple of years ago, a shift started in my life – a shift in my time continuum.  I wrote in that post I felt the time continuum shift would be completed within a year.

Well a year has passed since I wrote that post and the shift continues.  Quite a bit of changes took place this year and these changes or ‘shift’ as I refer to them will continue into next year.  You may remember in my post ‘– the time has come‘, I wrote that in a couple of weeks I would publish a post about what the future holds with regards to my cancer, my health, my care and my life.  That post is tomorrow and it will reveal the continued shift in my time continuum.

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Upon reading the words I wrote in last December’s post about my ‘shift’, I have come to realize maybe the word for this December is ‘evolve’.  With this year’s events, I have learned more about myself and as I continue to learn I continue to evolve.  Since the beginning of this blog, I have written past posts about life as a learning experience and my own personal life of learning.  And with the start of this year I wrote many posts about the ‘shift’ that has continued to take place in my life.  All my posts since the starting of my blog and what they represent have me come to realize maybe life is more about ‘evolving’ rather than about ‘shifting’ or ‘learning’.  Then again it may be the ‘learning’ and/or ‘shifting’ creates ‘evolving’.

From merriam-webster.com –

Learning

: the activity or process of gaining knowledge or skill by studying, practicing, being taught, or experiencing something: the activity of someone who learns

: knowledge or skill gained from learning

Shift

: to move or to cause (something or someone) to move to a different place, position, etc.

: to change or to cause (something) to change to a different opinion, belief, etc.

: to go or to cause (something) to go from one person or thing to another

Evolve

: to change or develop slowly often into a better, more complex, or more advanced state: to develop by a process of evolution

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So, the shift in my time continuum continues and honestly, I think it will do so for a while longer.  The month of December starts today and the days will come and go quickly and very soon 2017 will be upon us.

Next year will bring more ‘learning’, ‘shifting’ and ‘evolving’.

The Versatile Blogger Award

Thank you very much Laurel over at My Journey Into Darkness/The Story Of A Life Wasted With A Lying, Cheating, Disease-Giving, Narcissistic Husband who nominated me for this award.  Okay let’s be honest here, if the name of her blog does not prompt you to go visit, then in Laurel’s own words maybe this will “unapologetic curse words, snarky remarks, biting humor, telling it like it is and roaring while you do it!”  Please go visit her, you will not be disappointed, she is kind and understanding and open, I think she is anyway.

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THE RULES:

– Display the award on your blog.

– Thank the person who nominated you.

– Share 7 facts about yourself.

– Nominate up to 15 bloggers for the award.

 

SEVEN FACTS ABOUT ME:

For each award I receive that ask me to give facts about myself, what do I do?  I respond by writing everything you know about me is here somewhere in a post.  So my usual response is to refer you to a past post and if you are interested you can read more about me.

1946 – 1964

That’s Stupid Definition

The White Picket Fence

Shackles & Chains

I was living in a rich man’s world

A Team Player

Small Fear of Water

 

MY NOMINEES:

– Tony over at sonofabeach96

– Sarah over at Travels with Choppy

– Tony over at The Tony Burgess Blog

– Maniparna over at Scattered Thoughts

– Yinglan over at THIS IS ANOTHER STORY

 

My fellow bloggers no need to participate if you are not interested – I understand.

Thank you again Laurel, I appreciate you and I appreciate the nomination.

The Fights Continue

In my post ‘Bacon Grease‘, I wrote the following –

This week involved no doctor’s appointments, no procedures, no hospitals and no chemo; it was vacation week.  Because I have a drain and tube sutured to my back and connected to my right kidney, I require daily care to ensure the area stays sterile and the tube is free from blockage.  I have a home health professional that visits me daily to flush the tube and ensure the area with the tube is stable and healthy.

With these visits, the only events associated with my health; it made for a nice week.

In my post ‘98 Degrees‘, I wrote the following –

Sunday I felt better, therefore the final trip of my Vacation Week was taken and that evening the temperature reaches 101.6.  Monday my temperature spikes to 102.6 and I am now in the hospital.

That was the way my Vacation Week ended; no 98 Degrees, but 102.6 Degrees – not a catchy name for a boy band group!

In today’s post, I write the following –

I spent 3 days in the hospital last week receiving antibiotics to fight an infection via an IV.  You remember several weeks ago I had a procedure to insert a tube through my back into my kidney.  This tube; called a nephrostomy was removed prior to leaving the hospital.  The ureteral stent that was inserted at the time of the nephrostomy will remain the duration of the chemo treatment.  Both provided great relief from the pain I had previously experienced.  Now with no nephrostomy and just the ureteral stent, I am happier in that I can sleep in numerous positions because of no tube exiting my back and just not having it at all is, well ‘freeing’.

The hospital visit was not the most pleasant experience for me and you can read more about it in my post ‘Where is me?

Last Friday I visited my Oncologist Dr. D. followed by chemotherapy: the 1st week of the 2nd cycle for my chemotherapy; meaning I will have another treatment this week and then have next week off.  The 1st cycle was not bad in that the nausea was non-existent and I kept a healthy appetite.  Days immediately following I am very tired and fatigued, this is to be expected.  I also am experiencing mouth sores.  My gums and tongue are covered in sores and this creates discomfort; thank goodness for Magic Mouthwash!

As you can see last week was filled with many different events taking place with regards to my health.  This week will be slower with events, just chemo later in the week.  The antibiotics that were started via IV in the hospital I continue to take via pill form for several more days.

Infection continues to be fought – Cancer continues to be fought – I continue to fight.

I hope everyone has a great week, I appreciate each and every one of you, truly I do.

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significant

significant

From vocabulary.com –

Significance means having the quality of being “significant” — meaningful, important. It also refers to the meaning of something. A certain date might have significance because it’s your birthday or the anniversary of Princess Di’s wedding.

Today has significance for me.  Today is the day I noticed it.  Today is the day it started.  Today is the day the new journey and the new way of life would begin.

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Today a year ago; the journey with cancer began.

One year ago today, it was the day before my son #3 was to be married.  On October 29th of last year I wrote a post ‘A Week’s Occurrence‘.  In that post, I wrote the following –

Again, I have always told my partner if I ever become sick with a life threating disease, I do not want medical treatment, I accept the consequences and why would I want to extend my life when I will be dying someday anyway?  This is easy for me to say while healthy and based on my life; past and present, in my mind this makes sense.  But then there is that week’s occurrence with my body and I am thinking about this.  Do I really mean it?  Do I really accept the consequences?

In today’s post, I write the following –

A year later and I am in the process of receiving chemotherapy for cancer.

3 weeks ago, Gary, Roxy and I went on a walk.  Now that we are living in our RV in an RV park, many walks are taking place.  It was evening and the sun was starting to set and like many conversations taking place numerous times a day; we were discussing my health and my cancer.  I mentioned to Gary it was coming up to a year that I first noticed something was different.  I also mentioned to him about my past conversations about not having treatment for any serious illness and letting it take its course.  Gary reminded me of the pain and discomfort I experience now would only be worse if nothing was done to fight the cancer that is within me.  I agreed!

The past conversations had me thinking about why I would not seek treatment.

Those of you who have followed me for quite some time know; I attempted suicide several times as a young man in my twenties.  And throughout the years I have often thought about suicide and the ending of my life.  I often feel I do not want to be here; in this world and amongst the living – I would rather be gone; away, never to return.

I think those past conversations had me thinking, that not seeking treatment for a life threatening illness would be another method to commit suicide.  This makes sense in my mind; a mind that at times lacks in logic and is chaotic.

As a young man in my twenties and as an older man in my fifties, for me, my thinking tells me taking of my own life is not the answer.

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Today has significance for me.  Today is the day I noticed it.  Today is the day it started.  Today is the day the new journey and the new way of life did begin.

Today; a journey to become cancer free begins, and a journey to live a better life begins.

Thoughts, Feelings; moving forward

In my post ‘The number 12‘, I concluded with the following –

Chemotherapy will begin this Thursday and continue for the next 12 weeks. . . I will keep positive thoughts and faith to create a positive outcome.

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

Yesterday was the first day of my chemotherapy treatment.  Thoughts, Feelings; moving forward –