beauty of each moment

With family members here visiting this past weekend, I have fallen behind.  With my current health, my body fatigues easily and I need more rest.

More rest means I am spending less time doing other things – such as WP related activities.

I have fallen behind.  So, a short post for today.

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Body, Soul & Mind

 

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Currently my body is taking a beating.

Cancer is beating every part of my body and not wasting time doing it.

Immunotherapy is beating on my body with tiredness and fatigue.

Pain medications are beating my body and causing the bowels to not function properly.

Lymphedema is beating on my feet and legs and causing painful movement.

I wake every morning knowing my body will once again feel ache, tiredness, bowel issues and pain with movement.

I wake every morning knowing I will have a day I will need to fight back.

Fighting back is keeping a positive attitude – the best I can under the circumstances.

Fighting back is holding on to hope – there is always hope.

Fighting back is performing daily physical exercises – even when I don’t want to.

Fighting back is eating as well as I can – even when I have no appetite.

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Currently my mind is taking a beating.

Cancer is beating every part of my body including my mind – my thoughts and my emotions at times are weak.

Immunotherapy is beating on my mind with fatigue and lethargy – I am limited on time to use my mind for much rest is needed.

Pain medications are beating my mind and causing tiredness and limited thinking – I must rest and try to rejuvenate.

Lymphedema is beating my mind due to the effects from my limited walking.

I wake every morning knowing my mind will once again feel fatigued and emotional.

I wake every morning knowing I will have a day I will need to fight back.

Fighting back is keeping a positive attitude – the best I can under the circumstances.

Fighting back is holding on to hope – there is always hope.

Fighting back is performing daily mindfulness exercises – even when I don’t want to.

Fighting back is eating as well as I can – even when I have no appetite.

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Currently my soul is taking a beating.

Cancer is beating every aspect of my being including my soul – my identity, that spiritual part of me is receiving messages of non-understanding thoughts.

Immunotherapy is beating on my soul with questioning decisions and actions – am I spiritual and is this part of me being tested?

Pain medications are beating my soul and causing limited thinking – I must rest and follow that which comes from wisdom and makes some logic.

Lymphedema is beating my soul because of body image, pain and limitations.

I wake every morning knowing my soul will once again have questions with no answers.

I wake every morning knowing I will have a day I will need to fight back.

Fighting back is keeping a positive attitude – the best I can under the circumstances.

Fighting back is holding on to hope – there is always hope.

Fighting back is performing daily support from confirmations – even when I don’t feel it.

Fighting back is eating as well as I can – even when I have no appetite.

That Decision

In my post ‘Months not Years‘, I wrote the following –

Following my hospital stay, I had a visit with my Oncologist Dr. L. to discuss my options.  One option was to do nothing and the other option was immunotherapy.

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Concerning immunotherapy; any type of positive results is only about 15% – meaning 15% of participants will receive some type of response.  The response would be the slowing down of the progression of cancer to other parts of the body and/or stopping or slowing down the growth of the cancer cells.

So, I asked Dr. L. the question; how many years would my life be extended, if there were a positive result?  His response was that we are talking about months, not years.

In today’s post, I write the following –

Tecentriq is the immunotherapy drug that I am receiving.  In 2 days, I will receive my 2nd immunotherapy treatment.  The current treatment plan involves me receiving immunotherapy through IV every 3 weeks.  Upon the completion of my 3rd treatment, a scan will be performed to help determine the effectiveness on my treatment.

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The results of that scan may not provide enough information to determine if the treatment is working or not.  Another treatment round may be needed to determine the effectiveness – meaning 4 additional treatments then another round of scans.  If no determination is made in late August, then October will be the next time to make a possible decision.

What am I referring to when I write decision?

Since my first clue there was something wrong with me back on September 4, 2015; much has taken place.  This journey started with a discoloration in my urine.  Friends who have followed me for a while, know what has taken place since then.  Through all the tests, procedures, surgeries, treatments and appointments, one thing has stayed consistent.

The one thing that has stayed consistent, will play a major role in that decision.

That one thing that stayed consistent is my cancer has been aggressive in spreading.  That decision will be whether to proceed with treatments or let the cancer take its course.

I will be honest; I have always been honest here on my blog and at times blunt and direct.  In a couple of months, 20170416_194313 (2)I will be making that decision. Currently my days are filled with pain, and little activity due to my health issues limiting many things I can do.  Many days I remain positive and hold on to a glimmer of hope this immunotherapy treatment will respond with positive results.   Then there are a few days; I am ready to stop everything and let the cancer take over and seal my fate.

Currently the positive days outnumber the negative days.  As the days come and go, the date for that decision nears.

Magnifying Glass

I recently finally bought reading glasses.

For a while now, or if I am honest for a very long time now, I have needed reading glasses.  Most of the time when using my computer, I am sitting with my laptop in my lap.  Let’s say my eyes were about 2 feet from the screen.  And let’s say, all words were blurring.  And let’s say, I at times was using a magnifying glass to read the words.

I went to the local Walgreens, bought some reading glasses, came home and voila, I could clearly see the words.  What a difference it makes, I now need to become accustomed to having the glasses on the end of my nose so I see non-reading items clearly when lifting my eyes up – you know, like the TV.

So, I was feeling very excited about my new reading glasses and being able to read words again on my computer and not using the magnifying glass.

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About the same time, I read post from fellow blogger and friend Steph over at Bold Blind Beauty.

Steph is blind and her blog’s Welcome page begins with the following words –

An extraordinary online community that encourages beautiful blind women to transcend barriers and walk boldly together with confidence; in style, body, and soul.

If you do not know Steph, please visit her blog site, she is a wonderful lady with a message not just for women, but for us men also.

So, I was feeling very excited about my new reading glasses and I read a post from Steph’s blog site titled ‘Learning To Be Present Through The Loss Of Sight’.

I was feeling guilty reading her post, because here I am excited about my new reading glasses and Steph is writing about losing her sight and being declared legally blind and using a white cane and not knowing what was ahead of her.

I felt selfish and ashamed that I was excited about my new reading glasses when there are others who cannot see things I take for granted seeing.  With my body having cancer and me going through a tough time, I am tired and worn down physically and mentally.  So, the new reading glasses got me excited.

Steph’s post ‘Learning To Be Present Through The Loss Of Sight’, concludes with the following –

Life is way too short to waste it focusing on things we have no control over. Live life now and be in the moment.

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So, Steph, thank you for your wonderful post and reminding me to live life now and be in the moment.  Sometimes I am not, I am down and beaten and feeling sorrow.  But then I open my computer with my new reading glasses and I am reminded how exciting the small things can be.

Those glasses sitting on the edge of my nose is helping me be in the moment and enjoy the words in front of me – I no longer need the magnifying glass.

O-O-H CHILD

I wrote this post prior to my recent hospital stay.

Early morning and I am drinking coffee.

The lights are dim, just the way I like it in the mornings before others have awaken.

The body pain is a little stronger this morning than usual.

And then a song pops in my head.

And I remember the words and the music and I sing a portion of it in my head.

Ooh-oo child

Things are gonna get easier

Ooh-oo child

Things’ll get brighter

Ooh-oo child

Things are gonna get easier

Ooh-oo child

Things’ll get brighter

Some day, yeah

We’ll get it together and we’ll get it all done

Some day

When your head is much lighter

My mornings are usually the same; wake in pain, about a level 5, drink coffee in silence to reflect and ponder about myself, my cancer, my life and my upcoming day.

This particular morning as I was doing my usual morning routine, a song popped in my head for a reason.

Was someone or something sending me a reminder?

That morning, a song that popped in my head is O-O-H CHILD by The Five Stairsteps

It is a good reminder for me and I think maybe a good reminder for the world we live in.

Time Marches On

There is a country song by Tracy Lawrence with the title ‘Time Marches On’.

The song is about a family that through the years they grow into different people and everything changes.

Everything changes, nothing is constant and time marches on.

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Here are some lyrics from the song ‘Time Marches On’ –

The south moves north, the north moves south

A star is born, a star burns out

The only thing that stays the same is

Everything changes, everything changes

It is interesting to think about everything changes, nothing is constant and time marches on.

With my health, Gary takes care of me because everything changes, nothing is constant and time marches on.

Gary is retired from the military after 22 years of service and uses the VA (Veterans Administration) system of all his health care.  His home VA hospital for many years was in Dallas, Texas.  When we moved last year to temporally live in Pensacola, Gary was not ready to change his location.  Now that we moved my healthcare to Tampa, Florida, Gary has now changed his VA hospital to this location as well.

Gary recently has been having some health issues of his own because everything changes, nothing is constant and time marches on.

Recently Gary had an appointment with his Primary Care Manager Doctor at the VA hospital.

From that visit, referrals were placed for him to see specialists for conditions he suffers from.  He rarely complains about the way he feels; unlike me.  He may not have health issues as significant as me, but they are just as important.  He needs to take care of himself while also helping me.  I need to take care of myself while also helping him.

Because we both have changes in our body, health and lives, we recently had a conversation about us changing over the years.

Our lives are much different than what we thought they would be.  Our bodies are much different than what we expected them to be.  Everything changes, nothing is constant and time marches on.

(NOTE: I am expected to be released from the hospital today.  Look for upcoming posts about the events of the past 11 days.)

St. Pete

2 Months ago, back before my pain became unbearable, Gary and I were out and about some.

We were getting out a little to explore the surrounding area of our new location.

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Now my body is not allowing me to go out and find new areas to discover.

But 2 months ago, we drove not far from the MacDill Airforce Base and parked to take a walk.

Our destination was Saint Petersburg (St. Pete).  And as luck would have it, we went on the day the city was having their annual Mainsail Art Festival.

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

Why Not?

When I decided to start blogging, I had no idea what I was doing or where it would lead me.  I just started writing my early life memories, really in hopes my sons would read it someday.  I still have plans to give them this site where they can read about me and my life – but I am not quite ready yet.  So, the writing of blog posts began with those early life memories and few other subjects – and then cancer decided to be a part of my life.  This cancer has become my cancer; it belongs to me and no one else and does what it wants to my body.

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In my post ‘no answers’, I wrote about finally asking the questions.  You know; the ‘why’ questions.

“Why?”, “Why me?”, “What did I do to deserve this?”

I received many supportive, encouraging and beneficial comments.  I feel very grateful of the many wonderful friends I have here on WP, truly I do.

One of those friends Su, responded with the following comment –

As humans we have this overwhelming need to make sense of the world, but the awful reality I think, is that often there is no sense. No reason or logic, and sometimes absolutely no justice — or you would not be going through all this. I think in the end we need to look not for reasons but for useful beliefs — whatever gets us through. Sending love and hugs to you and Gary.

I responded with the following –

Yes, I totally understand where you are coming from. I am getting to that point now – not trying to find the reasons, but what are the useful beliefs and benefits. Thanks Su for an inspiring comment, you are a true friend.

Comments from other friends suggested I not ask “Why?”, but instead ask “Why Not?”

Wow, this got me thinking about, well – everything.

My mind has always believed everything happens for a reason – both good and bad.  Now, with my cancer and the extreme pain I am experiencing, my emotions are asking the “Why?” questions.

And your comments my friends bring me back to thinking about what my mind believes and not what my emotions are asking.

Everything happens for a reason – both good and bad.  So, Why not?

20170416_194313It may be there is something I can learn from this?  My cancer and my extreme pain is a tough lesson to learn something from.  They are both beating me down, draining my energy and trying to break my spirit.  It is difficult, but again I change my question to; Why not?

What am I learning from this horrible experience that is changing my views?  Why not use it to benefit me?

I find myself talking to ‘God’ or the ‘Higher Power’ or the ‘Supreme Being’ more.  I have not spoken or reached out to any of these in a very long time.

I am displaying to Gary more gratitude.  We have been together for over a decade and I took things for granted.  I no longer do this.  Gary, my caretaker is very important to me and I display more gratitude.  I say, ‘Thank you’ more and I let him know I appreciate him and would not be able to do this alone.  And more so than ever I say, ‘I love you’ and follow it with a kiss.

There is a ‘God’ or ‘Higher Power’ or ‘Supreme Being’; there is Gary and Su; there are all of you my friends, my supporters, my cheerleaders and my encouragers.

So, ‘Why not?’

no answers

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

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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