Monthly Archives: May 2017

no answers

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Not yet 2 years; there is still the summer season that is waiting to be enjoyed.

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But this summer will be different and I am unsure if I will enjoy it.

After the summer, then it will be that day, the 2 years ago that it all changed.  The day my life changed and will never be the same again.

It was about 20 months ago that I noticed a light discoloration in my urine.  I told Gary, that something was wrong; he responded that it looked okay.  I know my body better than anyone else.  And for 20 months I still say that – I know my body better than anyone else.  Along the past 20 months, I have told Gary and my doctors things about my body and I have always been right.

Why am I telling you this?

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These past 20 months; almost 2 years, I never questioned the reason and I never asked the questions.  I always have felt everything happens for a reason; both good and bad.  ‘That’s Life’ as they say.  I still feel this way – but now with the intense pain I am experiencing, I finally asked the questions.

Currently my typical day is enduring pain and as the day progresses, so does the pain.  My evenings the pain is overwhelming to the point my eyes are filled with tears and I am at my breaking point.  This experience repeats each day and at this point is not getting better – but worse.

The other night, I finally asked the questions.  I was in the bedroom alone ready for bed and experiencing the usual unbearable pain.  I was crying profusely and I lifted my face upward and asked “Why?”, “Why me?”, “What did I do to deserve this?”

I received no answers and I went to bed with the usual pain, knowing what has become the normal routine will happen.  I will lay there in bed and try to find a comfortable position, knowing it is in vain.  Eventually after several hours I will get out of bed and make my way to the other room of the RV and find the recliner and a position that lessons the pain I am feeling.  Eventually a few hours of sleep are obtained and I wake to a new day to do it all over again.

The questions are still on my mind now every day.  “Why?”, “Why me?”, “What did I do to deserve this?”

Still, no answers and I continue to suffer.

20170416_194313 (2)I experience a great deal of pain each day and my cancer is spreading.

“Why?”

“Why me?”

“What did I do to deserve this?”

Still, no answers.

Another Early Rise

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Another early rise, another day to live

The pain never left from the night before and continues to dominate

But, I again bring in another early rise, another day to live

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Will today be any different from yesterday or one of a repeat

Months of pains that have increased to a point of hatred

Nevertheless, I again bring in another early rise, another day to live

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There are the pills that have increased over the past weeks and months

There are patches, and creams and tolerance and adjustments

Yet, I again bring in another early rise, another day to live

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As the weeks have turned into months, the weak has turned into strength and acceptance

The upcoming weeks and months, I hope for change and less tears

So, I again bring in another early rise, another day to live

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What is it that wakes me, gets me up, moves me, takes me to a new day

Despair, Hope, Struggle, Journey, Brightness, Future, Unknown, Overcome, Strength, Desire

Once more, I again bring in another early rise, another day to live

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day of remembrance

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Today is Monday and a national holiday here in the United States.  We celebrate Memorial Day today to honor those that have died while in service fighting in any war.

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But as usual, with most holidays, we decide to celebrate it for something else.  Memorial Day is now celebrated as the unofficial start of summer, picnics and camping season.

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From Keystone RV Company website article ‘Why You Should Never Wish Someone a “Happy Memorial Day”’ –

Memorial Day was originally called Decoration Day as a day of remembrance for those who have died in service of the United States of America.  Since Memorial Day honors those who have made the ultimate sacrifice for our Nation you should not wish someone a “Happy Memorial Day.”

The above-mentioned article has ‘11 Facts You Didn’t Know about Memorial Day’ – click the link above to find out what those facts are.

Whether you live in the United States or another country, let’s not forget the many brave people who have died in the many wars of this world’s history.

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texasback.com

August 1973 – Ramblin Man by The Allman Brothers

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August 1973 – a song popular in this month – Ramblin Man by The Allman Brothers

This is based on a 1951 Hank Williams song of the same title. It’s about a guy whose travels take him to many places, and he takes life as it comes.

Interesting facts about Ramblin Man & The Allman Brothers

This was The Allman’s first top 10 hit.

The band played this on the premiere of an ABC show called In Concert. It was their first national TV appearance, and also Berry Oakley’s last performance, as the bass player died in a motorcycle accident a week later.

Early names for the band included The Escorts, The 31st of February, Hour Glass, Almanac, and The Allman Joys.

A short part of this song appears in the 1973 movie The Exorcist. It’s used in a bar scene when the priest is in the bar.

This was kept out of the #1 spot by Cher’s “Half Breed.” Gregg Allman married Cher in 1975.

This information was provided by Songfacts.com

The Tampa River Walk

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Gary and I are getting out a little to explore the surroundings of our new location.

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When my body allows, we go out and find new areas to discover.

Several weeks ago, we drove not far from the MacDill Airforce Base and parked to take a walk.

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Our destination was ‘The Tampa Riverwalk’.

Gary was having some fun!

I wanted to share some pictures with you of our walk that day.

Looking for Pain Relief

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My post ‘appointments and procedures‘, I wrote the following –

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.

In today’ post, I write the following –

This past Wednesday’s post ‘Larger Lymph Nodes‘, I mentioned I was giving it a few days, and then I would let you know how I feel about the results of the first of two Facet Injections I am to receive.

The results are I feel little difference in the level of pain I am experiencing in my lower back.  Immediately after the procedure I felt some relieve; that was most likely a result of the local anesthesia.  Back home and hours later the pain was worse; I reached a 10+ pain level and my emotions took over and with the tears flowing, once again I asked God to let me die now.

I finally found one comfortable position on the recliner and received some sleep and some brief pain relief.

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Crazy Things My Brain Says – blogger

Tuesday morning, I wake with my usual pain level of 5. The pain level from the previous evening is subsided and the new day brings another normal day of pain.  The normal day of pain is because of the many medications I take to control it.  As the day progressed so did the pain level.

This past Monday before the Facet Injection procedure took place I spoke with Dr. P.  We discussed the changes that had taken place with regards to my body since my initial consultation with him.  Dr. P. knows I have additional Lymph Nodes with cancer and the other Lymph Nodes that have cancer are larger.  He is also informed by me that my pain has increased as well.

Besides my lower back pain, I also experience pain in my right groin area that has increased as the weeks have passed.  Also, my nerve pains that radiates down my legs and up my back have increased as well.  Along with this increased pain is an increase in pain medications.

20170416_194313 (2)This past Monday, prior to the procedure Dr. P. suggested for my 2nd appointment he would perform a Superior Hypogastric Nerve Block.  The reason for this procedure is due to the increase pain in my groin area.  This procedure is also more precise in blocking nerve pain in the pelvic region.

So, Wednesday and Thursday came and went and how was my pain level?  The same as usual – a level 5 increasing in the evening to a higher level.

I am still looking for pain relief.

the option to kill myself

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Past weeks, months; I have written about my pain – the seeming never ending pain.

Is the pain because the cancer that is invading my Lymph Nodes are pressing against nerves?

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Is the pain because of the position I was in during a lengthy 10 ½ surgery placed too much pressure on specific nerves?

These questions are possible reasons and there can be others as well.

I am in pain every minute of every day and at times the pain is so severe, I want to die.

Those times of severe pain the thought of suicide crosses my mind – I want to do it – I want to kill myself.

February of last year, I wrote a post ‘suicide – it sounds peaceful, it sounds calm‘, in which I wrote the following words –

It sounds peaceful, it sounds calm, it sounds internal; it sounds like something that’s good to me, something that I want.  But as long as I am still here I am not going to commit suicide – I will not do it.  And though my mind tells me it is an option, there is that conscience part of me that says no, it is not an option.  And I struggle with this still; but it will not ever happen and I will keep fighting the good fight and I will keep continuing to move forward.

October of 2015, I wrote a post ‘I am not afraid to die‘, in which I wrote the following words –

I will be totally honest with you my readers – today the thought of killing me still occasionally crosses my mind and there are times I wish I were dead.   But the act of me intentionally killing me will not take place.  No matter the struggles I still have in my life; I understand the taking of my own life is not the way for me to deal with these struggles.  I believe all of us are on this earth for a reason, and no matter the struggles we encounter; we all have strength within ourselves to overcome, to move forward and to survive.  Sometimes that strength can be buried under all the burdens of despair and anguish and finding it can be difficult.

Back to today –

I attempted suicide in my 20s; about 30 years ago, and this act has and still is a constant thought on my mind.

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In one of my many posts here on my blog, I wrote about a memory I have when I was a very young child.  I was likely anywhere from 10 to 12 years old.  I remember wanting to die and walking into the kitchen and reaching for a knife.  I remember wanting to stab myself with that knife and killing myself; ending it all.

I am in my 50s now and those thoughts of killing myself and ending it all continue to be strong today.  Especially now, with times of pain so great the tears from my eyes can fill buckets and those thoughts of killing myself are so very strong.

And I have pills; lots of pills that can help with that – but still today I fight that urge – I remind myself; killing me, this is not an option.

Larger Lymph Nodes

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In last Friday’s post ‘Fluid‘, I concluded with the following –

The CAT Scan results indicate the current chemotherapy is NOT working – some Lymph Nodes previously identified as having cancer are now larger.

My life is currently fluid.

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

Monday, I had my first of two Facet Injections into my spine in hopes of relieving my pain.

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Image Provided by: Pacific Pain Medicine Consultants

I am going to give it a few days, and then I will let you know how I feel about the results of this procedure.

As mentioned in last Friday’s post, it was determined my current chemotherapy treatment is NOT working.  A CAT Scan indicated Lymph Nodes with cancer are larger now compared to the last scan.  There is no indication at this point of any cancer in my major organs; this is good news.

What are the next steps?

My Oncologist Dr. L. is out of town for a while and this is one reason for having the CAT Scan and visit last week.

My next appointment is not for a couple of weeks at which time we will determine the next steps in my cancer treatment.  We agreed to wait a couple of weeks because the first Facet Injection will have taken place as well as my consultation with a Radiation Oncologist.

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The appointment with the Radiation Oncologist will determine if radiation will be an available option for my widespread Lymph Node cancer.

Not only are there larger Lymph Nodes; the CAT Scan also indicated there are additional Lymph Nodes that are invaded with cancer as well.

So, what comes next; what do we do?

Oncologist Dr. L. has indicated to me there are other options available to me in the fight again my cancer.

As the weeks’ progress; procedures and appointments will take place that will help determine what these options are.

Months of pain have increased in my body and my emotions have increased in a negative way.  20170416_194313 (2)The past several weeks posts reflected my attitude; and now I have the news that chemotherapy is not working.   Each day I wake and try again.  I try to be strong – I try to be positive – I try to be optimistic.  Some days are better than others, but I keep trying.

I know there are other options.

In the weeks to come, these other options will reveal themselves.

In the meantime, each day I keep trying.

listening to my 70’s

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The MacDill Air Force Base has an excellent gym that includes 2 outdoor tracks.  When I am feeling up to it and my body allows, I make a trip to the gym to walk the track.  My usual length to walk is 1 ½ miles.  And if my back allows, I will sometimes push it to 2 miles.  Even though I am walking around a track and seeing the same views, I do enjoy the outside.  With the warmth of the sunshine and the breeze of the wind, I feel good.  What makes the walking even better is listening to my music.  The earplugs are in and you know I am listening to my 70’s music.

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The beats of the music back in that decade took me through puberty, from a 10-year-old kid to a 20-year-old young man. That decade many things were taking place good and bad; but the music helped me get through it all.

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Thank you to artist such as Blonde, John Denver, The Bee Gees, Elton John, ABBA, Queen, Donna Summer, Roberta Flack, The Jackson 5, Diana Ross, Olivia Newton-John and so many, many more.

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Those artists I still listen to today and are they are still here for me today, helping me to keep moving; lifting my spirits and taking me to a different time when life seemed so effortless and easy, fun, crazy with no worries.

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This current decade many things have taken place good and bad: and this music continued to help me get through it all.

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So, there I am walking my 1 ½ miles and sometimes pushing 2 miles, listening and being taken away for a little while to another time.

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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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.