Tag Archives: Future

Mishaps

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From my post ‘The new confidence‘, here are some excerpts –

‘….. 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. ‘

‘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.’

‘…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.’

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

In today’s post, I write the following –

The post I just mentioned I published on February 24th of this year.  My urostomy bag must be changed often.  There is a method that is followed and equipment required for maintaining my urostomy bag.  At home the maintaining is easy and usually scheduled.  But what about being in public away from home and a mishap occurs?  When I use the word mishap; I am referring to my bag leaking.  I literally have had urine draining down my leg in public.

I have had 2 major mishaps regarding my urostomy bag.  Because these mishaps can happen, Gary and I have to be prepared for them.  In the truck is a bag that contains everything needed to remove, clean, and replace my urostomy bag.  And just in case the mishap is major, I also have another bag with a change of clothes.

I wear my clothes differently now because of where my stoma is located; my urostomy bag is positioned at my waistline.  Because of this, my boxer shorts are worn high above my waist and my shorts need to be very loose and worn below my waistline.  The urostomy bag collects my urine, but also will collect gas.

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Generally, this works out the best for me while I am out and about in public.  Concerning driving, I must place a small pillow directly on my urostomy bag and the seatbelt over the pillow.  This will place less pressure on the bag resulting in less likely that is will leak.  I have confidence being out in public and the previous mentioned mishaps thankfully were taken care of without much fanfare.  My hope is these mishaps rarely occur; but when it does, I am prepared.

My blog, I have always been truthful about me and my life.  The good and bad, the ups and downs and the in-betweens.  I hide nothing here as it is important for me to be honest and write about my experience with something that many people will never understand.

I write these types of posts, because one day those that do not currently have access to this blog, will read this and will hopefully understand what I went through.

appointments and procedures

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In last Friday’s post ‘Cancer, Pain & Guilt‘, I wrote the following words –

Next week I see a Neurologist and I hope with that appointment to find the source of my nerve pain.  I am also hoping to find some relieve from this pain without having to continue to take a great deal of pain medication.

In today’s post, I write the following words –

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You remember the reason for starting chemotherapy again is because my cancer had spread into my lymph nodes both in the thoracic area and lumbar area.

Since my surgery back in January I have experienced several types of pain in my lower back that radiate out into the legs and upper back.

I had asked my Oncologist Dr. L. if my cancer was causing this pain and he indicated to me no.  The main pain in the lower back feels like it is in my bones, specially my pelvis.  A bone scan concluded there was no cancer in my bones.  Another pain I have is a stinging pain starting in the lower back that radiates down my legs, specifically on my right side.

Both these pains have increased over the past many weeks and pain medications have increased as well.  My quality of life has decreased because I am unable to do many easy activities without having pain associated with it.

20170416_194313 (2)This past Tuesday, I had my appointment with the Neurologist.  After providing information and performing some basic activities and upon reviewing my most recent scans; it was determined that one of the tumors on my lymph nodes closes to my spine is pressing against my genitofemoral nerve.  The neurologist report also indicated due to my lengthy 10 ½ hours surgery; pressure was placed on my lateral femoral cutaneous nerve.  So possibly these nerves are the cause of the pain I am experiencing.

The Neurologist suggested I be referred to Radiation Oncology for radiation treatments to help boost the chemotherapy and reduce the tumor that is pressing against the genitofemoral nerve.  The referral is in place for the consultation at the end of this month.  My hope is the radiation treatments can be worked in the schedule along with my chemotherapy treatments.  I am unsure at this time how this will be handled.

Prior to my Radiation Oncology appointment, I will have my first of two appointments for my Facet Injections.  You may remember I was also referred to Pain Management and it was suggested by them to have 2 appointments for the Facet Injections.

My current chemotherapy sessions result in me being very tired and I also eventually will have an outbreak of mouth sores.

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Image Provided by: moffitt.org

These mouth sores occurred during my chemotherapy last year and again are occurring with the current chemotherapy.  I do have a solution for the mouth sores that both relieves the pain and helps in healing them, but I usually will have them for 7-10 days.

More appointments and procedures will take place in the upcoming weeks; hopefully these will result in pain relief.

Cancer, Pain & Guilt

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In last Friday’s post ‘I still do my best‘, I wrote the following words –

Due to the pain I have experiencing since my surgery 3 months ago, I was referred to pain management at the Moffitt Cancer Center.  This week I had an appointment with pain management to discuss the possibilities of relieving my pain.  It was decided in the couple of weeks I will have 2 appointments to receive a Facet Injection in my lumbar spine.  The injection helps to reduce inflammation and provide pain relief.  I am hoping these injections will provide the pain relief I want so I can reduce or even stop taking pain medications.

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Image Provided by: Pacific Pain Medicine Consultants

In today’ post I write the following words –

My first appointment to receive the Facet Injection is not until later this month.  If you Google ‘Facet Injection’, you receive the following –

A cervical, thoracic or lumbar facet joint injection involves injecting a small amount of local anesthetic (numbing agent) and/or steroid medication, which can anesthetize the facet joints and block the pain.

I will be receiving the Facet Injection in my lumbar area as this is the origin of one of my pains.  I also have a different pain that I believe is related to nerves and I am hoping the appointment next week with a Neurologist will help locate the source and find a way to reduce the effects it is having on me.

The tiredness and the pain still immerse my body and all the medications; and there a many of them, are helping me survive each day.  Some days are better than others and on occasion Gary and I have ventured out and did some exploring around the area.  I do tire easily and my walking these days is slow, very slow and with each step there is some level of pain that accompanies it.  The longer the walking, the more the pain increases and the tiredness sets in.

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Image Provided by: moffitt.org

Yesterday, I had my chemotherapy treatment and nothing out of the ordinary came from it.  The next couple of days I most likely will sleep more than usual and that is what my body needs at this time.  I do not have another treatment for several weeks – remember with this round, I take 2 weeks off between treatments.

Next week I see a Neurologist and I hope with that appointment to find the source of my nerve pain.  I am also hoping to find some relieve from this pain without having to continue to take a great deal of pain medication.

Much is taking place these days as I try to live a life of quality.  It is difficult some days and I feel I just exist with no purpose or drive to do anything of worth.  I also feel that I am wasting Gary’s life, he deserves to live his life with quality and adventure and excitement and value.  Me and my illness is preventing this, he is taking care of me and I am thankful he is in my life, I would not survive without him.  But he deserves better, and I feel guilty.

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my character

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Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever.

Lance Armstrong

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Last Friday was my first chemotherapy treatment, and I am not expecting another treatment for 2 weeks.  My round 2 chemotherapy treatment taking place now is different from the round 1 that I had last year.  The Round 2 treatment I take 2 weeks off between the treatments and with Round 1 I took 1 week off.

I have not really felt any affects from the chemotherapy except tiredness.  I am very tired, but this could be because I am also on some major pain medications and other medications that help me to control the pain I am experiencing.  I have not felt nauseous and I still have hair.  With the coming treatments in the future weeks, we shall see if the side-affects change.

This past week was filled with making future appointments to specialists.  The hope is when I finally have these appointments, we can start to identify the pain source and manage it so my quality of life becomes better.

There is much taking place right now with regards to doctors and dentist appointments and settling into our new location and routine.  These past several weeks have been hectic and with my pain and the side effects of the pain medications; mainly drowsiness; Gary and I have had little chance to start exploring and experiencing Tampa and the surrounding area.

We hope that will change in the very near future.  I plan to have in the next couple of weeks a post about the MacDill Air Force Base.  The base is large and beautiful with great views and many activities for those that live on it.

I also hope in the near future to have posts about some adventures around the Tampa area.

For now, I continue to be as strong as I can amongst the weak and tired body.

For now, I continue to be as optimistic as I can amongst the weak and tired mind.

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Bad things do happen; how I respond to them defines my character and the quality of my life. I can choose to sit in perpetual sadness, immobilized by the gravity of my loss, or I can choose to rise from the pain and treasure the most precious gift I have – life itself.

Walter Anderson

PCM Visit

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In my post ‘Pain Explained?‘, I wrote the following –

Could the pain I have experienced for 10 weeks now be a result of Lymph Nodes and Bones?

I will receive answers and have more information next week.

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Image Provided by: aelis.es

In my post ‘This Friday – The Next Stage‘, I wrote the following –

Friday of last week I met with Dr. L. to discuss the results of the previous week’s tests and my future.  At this time, there is no indication my cancer has spread to any major organs or my bones.  However, it is confirmed my cancer is in the lumbar region Lymph Nodes as well as the thoracic region Lymph Nodes.

In today’s post, I write the following –

A little over 3 months ago, I had major surgery to remove my bladder, prostate and other male related organs.  The surgery recovery, I feel is satisfactory, but I have experienced some pain ever since then.  You may remember immediately prior to surgery I was experiencing major pain and was on major pain medications.  At that time I was experiencing many different pains and some of those pains I no longer feel.  Now, many weeks into my recovery; I continue to experience major pain and continue major pain medications.

Upon a recent visit with my Oncologist Dr. L. at the Moffitt Cancer Center, I asked if these pains could be a result of the cancer being in my Lymph Nodes, particularly the lumbar region.

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Image Provided by: NaturPhilosophie

This is the region that most of the pain is originating from and then spreads to other areas of my body.  Dr. L. responded that the pain I am experiencing would not be a result of my cancer.

I mentioned in my post ‘quality of life……. (or lack of it)‘, that I have 2 specific pains that cause discomfort in my daily activities and is affecting my quality of life.  I also mentioned I had an appointment with my Primary Care Manager (PCM); and we discussed my current pain issues.

The visit with my new PCM Dr. T went very well and I was extremely satisfied with her ability.  Dr. T. is the head of Internal Medicine at the MacDill Air Force Base medical facility and she took quite a bit of time to discuss my past medical history and current issues that are taking place.  She was truly interested in me and having me feel better.  Additional medications were prescribed and referrals are submitted for other specialized care.

20170416_194313 (2)These referrals for specialized care include a Urologist to continue the care and follow-up of my recent surgery.  Other referrals include Neurologist, Pain Management, and because I have the service available to me, a referral was put in for Optometrist.   Recently, I have noticed the eyes are not what they once were and having an examination would be a benefit.

I expect several more weeks of appointments to take place and the hopes are this pain that is affecting my daily activities can be controlled to a minimal level so that I may have a better quality of life.

Round Two

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This past Monday’s post ‘This Friday – The Next Stage‘, I wrote the following –

Dr. L. is honest and upfront with respect to my cancer.  There is no cure for my cancer; this next round of chemotherapy treatment is to hopefully stop the cancer from spreading or slow down the progression of it.  Once this chemotherapy is over, there are other treatment options available and at that time we will discuss the next steps to be taken.

This Friday, I will begin my next round of chemotherapy, the next stage in my journey with cancer.

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Image Provided by: note.taable.com

In today’s post, I write the following –

Round Two –

Today I start my chemotherapy.

I have been through this before and I know the process.

Round one of chemotherapy was 1 treatment for 2 weeks and then 1 week off.  There were 4 cycles that resulted in 12 weeks.

Round two of chemotherapy is 1 treatment for 1 week and then 2 weeks off.  There will be 4 cycles that results in 10 weeks.

I have been through this before and I know the process.  What I do not know are the results.

For now, I do not know the results of the chemotherapy treatment once it is completed.  These results will be revealed many weeks from now.

For now, I do not know the results of how this chemotherapy treatment will affect me.  These results will be revealed in the next many days from now.

Round one of chemotherapy I was tired a lot, but was never nauseated and did not lose my hair.

Round two of chemotherapy I expect to be tired a lot and I hope not to be nauseated or lose my hair.

I have positive expectations of this chemotherapy treatment for both long term and short term.

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Dying Before You

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I only write for myself here on my blog.  Based on comments, some readers understand me and others do not.  But then again, some readers are learning, while others are just reading.

My posts make perfect sense to me, but to others may be just a collection of ramblings.

Gary and I have conversations about the future.  These conversations are more about the immediate future; but the further out future is sometimes discussed as well.  You see, we discuss the immediate future; the coming months – because there are some unknowns and there are some plans.

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Sometimes our conversations discuss the further out future that may or may not include me.  I have an appointment tomorrow to discuss what is next regarding my battle with cancer.  The appointment will determine the immediate future and the further out future.

But before tomorrow’s appointment, sometimes our conversations discuss the further out future.  Gary and I do not deny what could happen and what will happen.  We all are going to die someday, that is a given – will I die soon, in the immediate future or the further out future?

Gary and I discuss the possibility of me dying before him.  During these discussions, he tells me that if he is left alone, he would do nothing and be nothing.  I want him to live his life to the fullest and not sit alone and not enjoy life.

One evening we had this discussion and later I went to bed for the night.  As I laid there with these thoughts in my head, I became angry.  Why was I angry?

I was angry for several reasons.  Besides our discussion that particular evening, I also watched one of my weekly television program series.  This episode centered around a young woman who had Stage 4 Cancer and was terminal.  She made friends with an unlikely person and the episode ended with this new friend telling her to keep fighting the battle each day, be strong and never give up; fight each and every day.

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When I am feeling weak, I want to give up and then there are days I fight.

I want to be around to take care of Gary in the future.  And I remind myself, he needs me just as much as I need him.

But we all are going to die anyway, someday, right?

I feel pain every day and I continue to be physically weak and slow.  My body most times dictates my mind and I become emotionally weak, down and angry.

I am angry that I might not be around to take care of Gary.  He talks about being by himself and being alone and not doing anything, once I am gone.

I don’t want him to do that

Maybe I am angry because I am going to die sooner than him and not be able to take care of him.

I am not doing well at taking care of myself – maybe that is why I am angry

I know – be strong every single day.

Be strong and keep fighting.

But, we are all going to die anyway, someday, right?

all is not lost

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My category ‘Pictures & Stories’ are posts with me writing a fictional, creative short story about a picture.

all is not lost

all is not lost –

The gentle crashing of the waves against the rocks brought a feeling of comfort.  The days were long and the nights even longer, but when the sun was full, the waves would again brush the landscape that was now his home.

The time alone brought solitude and the knowing of the unknown future brought a sense on insanity.

Who would know he is here?

Would efforts be made to save him from his paradise?

It wasn’t that far, for the distance exposed the civilization.

But still no one knew he was there.

But the waves that filled his days, were there once again as a gentle reminder that all is not lost.

Pain Explained?

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In several past posts, I have written about pain and other issues I am experiencing.

In my post ‘Pain‘, I wrote the following –

The pain is here today

For this one thing I know

As the days become weeks

The pain will come and go

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Image Provided by: NaturPhilosophie

In my post ‘Exactly 1 Month‘, I wrote the following –

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.

In my post ‘It’s 2:16 in the morning‘, I wrote the following –

I also have pains not associated to my surgery and recovery that make it difficult at times to find a comfortable position to sleep.

In my post ‘I don’t know‘, I wrote the following –

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?

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In today’s post, I write the following –

A week ago I had a procedure and a CAT Scan performed to try to find out the cause of my continued pain and other issues.  I will be honest here, as I am always honest and sometimes blunt on my blog.  The other issues I have referred to is my bowel movement; yes, we all have bowel movements that is part of our bodily functions.  Mine are no longer considered normal and go from one extreme to the other and at times has caused disruptions in my daily life.  I saw a Gastroenterologist early last week and he believes I have Irritable Bowel Syndrome; most likely resulting from my recent surgery.  He indicated it usually corrects itself over time and medication was prescribed to help with the symptoms.  He also suggested a Flexible Sigmoidoscopy (Flex Sig) to rule out cancer.

Tuesday of last week the Flex Sig was performed as well as a CAT Scan.  The results of the Flex Sig indicated no appearance of cancer in my rectum which was near my bladder, when I had a bladder.  This is good news.

The results of the CAT Scan were not so good.  I have several Lymph Nodes in my lumbar region that have increased in size since my last scan took place in early January.  Because this scan only showed the lower part of my chest, there was one Lymph Node in the thoracic region that is also larger in size.

These results have changed everything.

This past Monday upon my initial consultation with my new Urologist Dr. L at Moffitt Cancer Center, I proceeded with blood tests and a Chest CAT Scan.  Today I am having a MRI on my Lumbar Spine, and Echocardiogram, and a Whole-Body Bone Scan.

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My friends, it is a good bet the cancer is in other Lymph Nodes in my body and based on other symptoms I am experiencing, it could also be in my bones.

Could the pain I have experienced for 10 weeks now be a result of Lymph Nodes and Bones?

I will receive answers and have more information next week.

Central Florida Visit

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A couple of weeks ago in my post ‘Look Forward‘, I wrote the following –

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.

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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.

In today’s post, I write the following –

We left the Naval Air Station Pensacola RV Park 2 days ago, and stored the RV for the next couple of weeks.

Gary and I are driving to Orlando, Florida today and we will be staying at Gary’s older brother’s home and taking care of his mom while his brother and wife are out of town for a week.  This coming week we will be visiting locations for a possible permanent location to call home base.  I will fill you in on what we are looking at for a permanent residence in a future post.

This coming Monday I will have an appointment with a new Oncologist Dr. L. with Moffitt Cancer Center in Tampa, Florida.  Per U.S. News & World Report’s Best Hospitals for Cancer rankings 2016-2017, Moffitt Cancer Center is ranked #1 in the Southeast and in the state of Florida and #6 in the nation.  After visiting their website and the recent communication I have had so far has me impressed with them and my hope is this feeling will continue after my appointment this next Monday.

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Image Provided by: moffitt.org

In about 10 days we will make our way back to Pensacola.  Depending on our visits this coming week, upon our return to Pensacola, our plan may well be to hook the RV to the truck and drive immediately back to central Florida.

We feel strongly about locating ourselves in central Florida and we still have plans for some future travel adventures.  The period of our initial stay in central Florida depends on my health because the first part of April is when the next round of image tests will take place.  The results of these tests will dictate our immediate future plans upon our relocation.