It’s 2:16 in the morning

I have had a restless night, not much sleep because I have thoughts swirling in my head.

It is a while now since I really have had one of these nights.  Since surgery, I am taking medications to help me sleep because I continue to have pains associated with my surgery and recovery.  I also have pains not associated to my surgery and recovery that make it difficult at times to find a comfortable position to sleep.

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But on this particular night, it is those thoughts swirling in my head.

I am unsure how long it will be by the time I publish this post.  I may have upset someone and I may have upset you and I may have upset myself.  I make no apologies to no one, including myself.

This blog has always and will always be about me and my life and for that I make no apologies.  I am who I am and have changed for the better in many ways over the years.  I continue to change for the better, though at times the changes come slow; to me at times slower than what my life will provide me here on this earth.

When I die, I will not be a perfect person; I hope to be a person that at least tried to be a better person.  I strive every single day to be a better person.  Some days I succeed and many days I fail; some days I fail miserably.

My point is I try and I do it my way, because I know me better than anyone else knows me.

I have been told at times by people that they do not understand me.  I at times do not understand me either, but I still know me better than anyone else.

When creating this blog, it was a way for me to write about me and my life.

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My life in words for I hope one day those important to me would read.  I have no idea if they will read it or not – I don’t know.

This brings me to those thoughts swirling in my head tonight, this restless night and me writing this post at 2:16 in the morning.

I don’t really like to be rude; I can be though, and have been times in my life.  I can be rude and have been rude to people I know and to strangers alike.  My personality is complex and at times people do not understand me.  This has already been identified.

When writing and publishing posts, I attempt to write in a way where I do not come across as rude and I try to consider other’s feelings.  So please do not take this the wrong way – I am being honest here.

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When I write posts about me, the true very personal me, I ask for no advise.  I write the true personal me because it is important for me to do so.  I have come to appreciate support and encouragement here and the friendships I have made are invaluable.

Now, again at 2:16 in the morning, I am writing the true personal me.  It was a little while ago; and that week was tough and that ‘I don’t know’ was tough and therefore I was rude because I did not ask for advice.  I was writing the true personal me because it is important for me to do so.

I don’t know

Preface –

For almost 2 years now, I have written about me; not just those events from the far and near past, but my personality, my feelings, my emotions and my thinking.  Yes, I have my days of good, that are then followed by days of bad.  What do I mean by this?  I have always revealed my weakness and along with that my strength.  Recently I am weak and struggling and I pretend to you and others that I am fine and I am strong.  But, right now I am not.  And because of this, I become that other me; that mean me – that I try to hide from others except the one that matters the most.

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I voice recorded the following words yesterday and document today for all to read – especially the one that matters the most –

I have the last few days been a little down, a little angry and upset.  And, as usual because of who I am, I take it out on Gary – I am a mean person.  I am not respectful to him, even after he puts so much effort into helping me out, I disrespect him – I am mean to him, flat-out mean.  I went to the doctor the other day and the recovery is going fine and he (the doctor) spoke of because of some Stage 4 Cancer; I don’t remember what exactly what we were talking about, he spoke of a patient he had that went through the same surgery as I did and within a couple of months he (the patient) died because the cancer had spread.  Not necessarily what I wanted to hear, but, um – then I spoke with my Oncologist the week before who talks about all her patients being terminal; once again not what I want to hear.

So, I have aches and pains and other issues that bring me down and I think to myself; are these pains associated with cancer spreading or they a result of my surgery and I am still recovering; or are they result of inactivity on my part because I am restricted to a certain extent to exercise and being more active?  I don’t know, I don’t know.  And that is what brings me down; I don’t know.

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Uncertainties right now in my life are majority and certainties are the minority.  And sometimes this gets to me.  And my optimism and positiveness results in negative and pessimism.  That brings me to just not wanting to try anymore, just forgetting about it all: and just like screw it.  I don’t want to deal with it, I just don’t want to move on; I just don’t want to move.

But, then there is Gary, who continues to put a great deal of effort into helping me, not just me physically, but you know preparing for the future and dealing with doctors and other things associated with my health.  And he does this it on a consistent basis and I don’t always, um, you know recognize him for it; because I am dealing with my own stuff.  I make it about me, it is always about me; and so, this is what it is about today.

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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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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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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Roxy is excited

Hello everyone –

As many of you know I am very late on responding to comments this week – and for that I am sorry. I will try my best to catch-up this weekend.

I ended up staying in the hospital until yesterday – and now am resting comfortably at home.

Gary and I are excited for me to be home, but I think Roxy is the most excited.

Then it changed

Almost one year ago today my post ‘it’s not a dream‘, began with these words –

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I woke this morning my usual time between 4-5 AM with the same thoughts on my mind as I had when I laid my head down on the pillow the night before.  As I am drinking my coffee I think about these thoughts and I think to myself ‘Was that a dream?’  Then it occurs to me, ‘No it’s not a dream.’  The events of the day before really did occur.

Almost one year later in this post, I begin with the following words –

Many of you know what took place last year and what has taken place so far this very young year.

There are times I write my thoughts down or voice record them for future use in a post.  Sometimes these thoughts are then forgotten for a while until a later time when I want to write a post about them.  Some of these thoughts were documented when I was in a certain mood or having specific feelings about my life at a particular time.

The following is some of that documentation; it was sometime last year, before Stage 4, before chemotherapy, before surgery and before recovery –

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I do not feel inspirational, I do not feel strong, I do not feel anything.  You my friends write comments with compliments.  I wake in the mornings to feel pain and I cry.  Not because of the cancer, not because I am dealing with stuff of the day.  I feel nobody understands, I know it is just me – I am not receiving the support and interest that I want.  It upsets me because I really do not feel anyone is really interested in me.  I know people are, and my family is, but I really do not feel they are – I feel like I am going through this alone.  Really, nobody is truly interested.  I get on the phone and when I do receive a phone call, I just say ‘It is all good, everything will be fine.’  ‘I have some aches and pains.’  But truly I do not want them to know what I really am feeling.  I do not sugarcoat it but do not want to give them all the information because I do not want to bring them down.  I do not feel inspirational, I am just dealing with anger, dealing with pain, dealing with tiredness.  I do not feel grateful or thankful or happy – I have no motivation.  I do not feel anything positive right now, everything right now is an effort – nothing is great – I just exist.

Today, in this post, I want to conclude with the following –

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But then it changed.  Why?  Because the body became sicker and the illness more serious?

What changed is I received a great deal of support and encouragement from you.

I am currently recovering from my surgery and I continue to receive support and encouragement from you – just what the doctor ordered.

(Note: my responses to your comments will be delayed this week.  Please understand I continue to be in recovery mode and am moving slow.)

PowerPort

In my wallet, I carry a card that reads ‘PowerPort’.  My PowerPort card also includes my name, my oncologist name, a date and where this PowerPort is located.

My PowerPort Patient Guide has the following –

Your Band PowerPort Implantable Port

Your Band PowerPort device is a small device (about the size of a quarter) used to carry medicine into the bloodstream.  It has one or two small basins that are sealed with a soft silicone top, called a septum.  The port is placed under the skin on your chest or arm.  The port connects to a small, soft tube called a catheter.  The catheter is placed inside one of the large central veins that take blood to your heart.  When a special needle is put into the septum, it creates “access” to your bloodstream.  Medicine and fluids can be given through the needle and blood samples can be withdrawn. 

Your port has three bumps on top of each septum.  The port with one septum is also shaped like a triangle.  These features help the nurse know that your port can receive power injections. 

My PowerPort is under my skin on my right side chest and was used for my chemotherapy treatment.  At my last visit with my Oncologist Dr. D., I asked her how long I would keep the PowerPort.  She responded I would keep it for at least a year.

My PowerPort is not just used for chemotherapy, it can also be used for IVs.  I expect my PowerPort will be used at some point during my recovery period after surgery.  Once the biopsy takes place of the organs that are removed, the possibility of chemotherapy treatment may be needed and once again my PowerPort will be used.

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And if I do not immediately have need for my PowerPort, I will have it for at least the next year, just in case.  Every 3 months, my PowerPort requires flushing; I will make a trip to the hospital and a quick and painless flush of the PowerPort and catheter will take place.

Back in September in my post ‘The lab experiment‘, I wrote the following –

As indicated in my post ‘Drain‘, I have a tube inserted in my back directly into my right kidney to help relieve the pain I have experience for quite some time now.  Originally it was thought this tube would be inserted for the full 12 weeks of chemotherapy, but because there was also a stent placed in my ureter, the tube may be removed in a couple of weeks.  The stent would remain in place until after chemotherapy is completed.

I feel like a lab experiment with the medical port inserted into my chest and a tube protruding from my back

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

The tube in my back was removed several months ago, and the ureteral stent was removed last week.  The PowerPort will remain for future needs and serve as a daily reminder of all that took place before today.