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.

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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.

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Seeking a Home Base

Many of you know, last year Gary and I sold our huge house in Dallas, Texas.  We bought an RV and our plan was to travel the United States for a while until we were ready again to settle down permanently.

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My health changed for the worse and the travel adventure across the United States was put on hold.  We are currently living in Pensacola, Florida while my health care needs are taken care of.  Pensacola by no means is where Gary and I want to plant roots and call home; it is just a temporary location.

Our current location is an RV park located on the Naval Air Station Pensacola.  Their policy is an RV can stay for 3 months and then must leave for 2 weeks before returning back to the park for another 3 month stay.  Back in October we spent 2 weeks in another park near here that is also associated with the Naval Air Station, but not located on base.  At that time I was going through chemotherapy and we had to stay here in this area.

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The next time to leave our current RV park, we decided to store the RV for 2 weeks and went on our cruise in December.

December of last year in my post ‘My Message‘, I wrote that Gary and I initially were to spend Christmas with his family at the RV park, but the plans were changed due to unforeseen circumstances.  Those unforeseen circumstances involve Gary’s younger brother experiencing major health issues.  Some of you know Gary’s mom who suffers from dementia lives with his younger brother.  Because of his younger brother’s health issues, we transferred mom to Gary’s older brother in Orlando when we drove there for our cruise.

Now it is March and time again for us to leave this park for 2 weeks.  We again have decided to store the RV for 2 weeks and take a trip to Orlando for several reasons.

Gary’s older brother and wife are leaving for a weeklong trip and Gary and I will be staying with his mom during their absence.  We are also seeking and searching for a possible location to plant roots and find a home base.  We need a home base for several reasons and central Florida is our first choice.  The home base will allow us to have a permanent residence where we can receive mail and a place we can come back to after our travel adventures.

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Image Provided by: homebase.ai

The home base will also allow for Gary to have access to a permanent VA hospital for his medical needs.  Because our home base will be in a different area than our current location; I will need to find another health provider for my healthcare needs.

In 2 weeks, the RV is stored and we drive to central Florida to take care of mom and search for a possible home base.

Once the 2 weeks is over we will return to our current RV park.

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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tick away

A year ago in my post ‘Predict our day of death‘, I wrote the following –

On deathclock.com there is ‘The Death Clock’ and the website states –

Welcome to the Death Clock(TM), the Internet’s friendly reminder that life is slipping away… second by second. Like the hourglass of the Net, the Death Clock will remind you just how short life is.

So I proceeded to enter the information, clicked the ‘Check Your Death Clock’ button and received the following –

Your Personal Day of Death is….Saturday, June 10, 2028

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Image Provided by: http://www.deathclock.com

Okay, by this ‘Death Clock’ I will die in 13 years.

September of last year in my post ‘I have been there, done that‘, I wrote the following –

From cancer.net –

This year, an estimated 76,960 adults (58,950 men and 18,010 women) will be diagnosed with bladder cancer in the United States. Among men, bladder cancer is the fourth most common cancer. It is estimated that 16,390 deaths (11,820 men and 4,570 women) from this disease will occur this year.

From cancer.org –

About half of all bladder cancers are first found while the cancer is still confined to the inner layer of the bladder wall. (These are called non-invasive or in situ cancers.) About 1 in 3 bladder cancers have invaded into deeper layers but are still only in the bladder. In most of the remaining cases, the cancer has spread to nearby tissues or lymph nodes outside the bladder. Rarely (in about 4% of cases), it has spread to distant parts of the body.

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Image Provided by: of.sucrap.com

My cancer is Stage 4 bladder cancer and I know the statistics.

In today’s post, I write the following –

Will I Die Soon?

The statistics for Stage 4 bladder cancer is I have a 14% to 24% 5-year survival prognosis.  I keep myself informed because this is my body, my cancer and my life and I want to know all the good and bad about what is taking place with me.  Do I sit here and wait for death and not live in the meantime?  No, I want to live as much as I can before that date on the calendar is here.  But I am restricted now on living life to the fullest as I continue my recovery.  The upcoming weeks will reveal what may come next in the subsequent months to follow.

Will I Die Soon?

‘The Death Clock’ indicates I will die in 11 years and my bladder cancer stage and prognosis indicates my chances are slim to live after the next 5 years.

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Image Provided by: http://www.pinterest.com

Whether it be 5 years or 11 years, I need to live in the here and now.  I still have things to learn and more growing needs to take place.  That person I want to be should be now – I do not need to wait until it is too late.  Some of you may not understand this; but it makes perfect sense to me.

I have no idea when my time on this earth is going to end – but it continues to tick away.

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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Recovering & Discovering

As my body is recovering

My brain is discovering

Aches and pains are starting to subside

Relief and comfort are increasing in strength

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Image Provided by: More Sky

Prior to my surgery, as you know many of my posts were scheduled during my downtime

Within the past week, several of my posts were written well before my surgery

My body lets me know when I need movement, rest and time on WordPress

Trust me, I am listening to my body while it is recovering

 

As I am recovering, I am catching-up on past posts you have written

This time on WordPress allows my brain to continue to be discovering

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Image Provided by: Feedster

By end’s week, my hope is to be current on reading and responding

But let’s not forget, during this time my body dictates rest and time on WordPress

 

Because of my surgery, my mind is full of new topics and subjects to write about

The brain though discovering, is finding difficulty to translate them to words

My body is recovering and my brain is discovering

Movement of both is good and rest of both is good; time on WordPress is good

 

As my body is recovering

My brain is discovering

Aches and pains are starting to subside

Relief and comfort are increasing in strength

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Image Provided by: WallpapersCraft

Imagine You

A month ago in my post ‘Travel Vision‘, I wrote the following –

Since my initial posts about our travel adventure and the idea of meeting many of you; my life changed dramatically.  But the plans and the travel, though on hold now, they are still my vision for the future, especially now more so than ever.  Why?  Well, because you have supported me and helped me through a tough time in my life.  I want to thank you both in my writings here on WP and if possible in person when the travel adventure takes place.

In today’s post, I write the following –

I realize I would be unable to thank each one of you in person, but if it is possible to thank a few of you in person; I would be honored.  I remain optimistic this will occur someday, so in the meantime, I imagine you.  There are many of you that I know what you look like and have a clue to your personality.  Part of your personality is portrayed through your writings and posts.  But I feel no matter what we display; we do not know each other 100%, it is difficult for the true 100% of us to be here on our blogs.

Okay, so where am I going with this?

Well, back to my reason for this post – Imagine You

Back in November of last year after Thanksgiving: I was sitting on an airplane ready to fly back to Florida from Texas.  While the plane is parked at the gate, I sit in my chair waiting for others to board and take their seats.  Gary and I are lucky enough to sit on the first row of the plane, not first class mind you, but we are on the first row which means more leg room.  Across the aisle are 3 women, very different women who chat as if they are the best of friends for many years.  One of them has a familiar look because she reminds me of a fellow blogger friend who I will not mention by name here.  This fellow blogger friend does not have a picture of herself on her blog, but she has briefly displayed herself a couple of times: so, I have a glimpse of her in my mind.

As I sit there and listen to these women chat I imagine the one that has the familiar look is my fellow blogger friend.

There are other times I am in a public area imagining people around me are you.   These other people around me, these strangers to me I imagine are really friends, you my friends.

I imagine these strangers are people I know; people who I know a little about and people I know a lot about – I imagine these strangers are not strangers after all – they are friends – they are you.

I would like to meet every one of you in person someday.  Most likely that will not happen, so in the mean time I will continue to – Imagine You

(Here is an upbeat song for a Monday morning.  If I could I would be up dancing, but my recovery is not allowing that for now – soon, very soon, I will be!)

I remain grateful (Reader Discretion Is Advised)

We are not far along into the new year and I hope all is well with each one of you.

Today has many unknowns for me as it did a year ago at this time.

Last year had me diagnosed with superficial bladder cancer, followed by 2 surgeries and then the upgrade to Stage 4 Bladder Cancer, followed by 12 weeks of chemotherapy.

In 5 days, this coming Monday, I will have a major surgery to continue the journey that started more than a year ago.

Once the surgery takes place, there will be more to come that currently is unknown.

Once the surgery takes place, there will be more to come that is certain.

Let me be honest – I have always been honest here on my blog and at times direct.

I will no longer have control of my urination and I will no longer produce sperm and possibly no longer have an erection.

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

I have no problems no longer producing sperm and I have no problems with no longer having an erection.

However, it does bother me some to no longer have control of my urination.  It seems odd that this would bother me, but it does.  I took for granted things in my life, one of them is having control of my urination.  Think about this for a minute; as men grow older, the whole producing of sperm and lack of erection can happen.  And there are pills for that – not that I am interested – but they are available.  But never had I thought about not having control of my urination.

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.

This bothers me some – but I will accept it and I will become accustomed to it and I will live with it.

Soon the unknowns will become knowns and there will be more to come that is certain.

What I do know today; is I will remain grateful.

For after all that has taken place last year and all that is to come next week and the months to follow; I still have many things to be grateful for.

I have a spouse who is my caregiver, who is always here for me.

I have a home, a place to live, a place to shelter in.

I have a family, both near and far, who support me.

And I have you my friends, who are never more than a comment away with support, encouragement, thoughts and prayers.

I remain grateful.

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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