Hospice & Home

Last Monday’s post ‘Cancer will take my life‘, I wrote the following –

Cancer will take my life.  I have always referred to this cancer in my body as my cancer as it does not belong to anyone else.  My cancer will take my life.  Those pictures associated to last Friday’s post revealed just how much my cancer has taken over and my fight is coming to an end.  My body and mind are worn and it is time to prepare for what is ultimately to take place.

The family visits of past weeks are over and my body is tired and mind is ready.

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Image Provided by: Harbor Light Hospice

Hospice will begin this week and changes will take place in many areas for both Gary and me.  If you read my post yesterday, starting this week; the amount of posts will be reduced.

In today’s post, I write the following –

Now being home for a week, I feel much better being back in my comfort zone.  I am thankful to have spent time in the hospital, because I needed to be there.  I need to be home also, and I am certainly thankful to be back here now.

This past week I have I received much needed rest and Gary and I have started new routines based on my Hospice care.  The nurses and other associates with Hospice are wonderful and I feel very comfortable in their care.  This past week, though at times difficult both emotionally and physically; this past week, the transition felt right, certainly felt needed and I was ready for it.

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Emotionally I accept where I am in my life, what is left of it and honestly, I am ready for the end.  I know others are not ready for the end; it is coming and I find myself at times wanting to look at a calendar to see what date that will be.  I have no date, and find at times I am frustrated with not knowing.

Physically my body is beaten down by my cancer and as each day passes, so does some strength, flexibility and mobility.  I preform exercise at least once per day and sometimes twice to help slow down the deprivation taken place in my body.

Now that I have a ‘G Tube’ inserted into my stomach, I no longer eat by mouth.  All my nutritional needs are through IV as well as my pain medication.  Remember I also have a urostomy bag that collects my urine and along with all other outside aids, I have lots of tubes coming and going from my body.  I also recently was put on oxygen due to shortness of breath and the amount of effort it takes me to do small tasks; such as changing positions.

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Gary is here beside me always willing and able to take care of me with the small tasks to taking care of changing my nutritional IV that requires changing on a daily basis.  There are many other daily tasks he does to help make my life easier.  I eat lots of ice chips and if it has flavor, then it is like having a treat every day.  So, Gary makes sure I am stocked on ice, popsicles and the like.

The first week with Hospice has gone well and I am grateful to be home.

It feels like a dream

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It feels like a dream

This reality of mine

For it seems only yesterday

My days were always full of sunshine

 

Now no matter the day

With the sunshine or none

I wake every morning

Waiting for the day to be done

 

For each passing day

Takes me closer to it

That all important day

When my breath is ready to quit

 

Each day becomes difficult

Some a little, some a lot

This is not what I envisioned

This is not what I had thought

 

It feels like a dream

This reality of mine

The daily pains, the daily struggles

It must be a sign

 

This body of mine

The look and the feel

My cancer in my body

It all seems unreal

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..out of my nose soon

This past Monday, in my post ‘Blockage‘, I wrote the following –

What caused this fluid buildup?

After a scan had taken place, it was determined I have a blockage between my small and larger intestines.  It is believed the blockage is caused by my cancer.  It is certain it will have to be dealt with before going back home.

7 days later and I continue to be in the hospital and be treated well enough I hope to go home soon.

But what about fixing the blockage?

I should know more today concerning what is next with this blockage issue.  I should be able to let you know later this week with better, up-to-date information.

In today’s post, I write the following –

11 days later and I continue to be in the hospital.

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But what about fixing the blockage?

After days of relieving pressure in my abdominal region and hoping the blockage would auto-correct itself, it has not.  For the past 11 days, I have had a tube inserted in my nose and down to my stomach in hopes the bloating and fluid would be decreased.  The issue continues and now more aggressive measures must be taken to resolve the blockage or at least make it manageable.

Yesterday, I had a small surgery to insert a ‘G Tube’, from my stomach to the outside of my body.  This ‘G Tube’ will provide me a means to release the pressure from my stomach and small intestines without a tube going through my nose.  This ‘G Tube’ should bring me some relieve, however it brings on a whole another set of challenges.  With this tube, I will no longer eat through my mouth; but instead through IV.

My medications will now be taken differently because I must allow the absorbing to take place in my stomach without being sucked out by this new ‘G Tube’.   A great deal of changes will take place in the next days and weeks to grow accustomed to this new way of life – my new way of life.

Gary and I have much to learn with this new way of life and I am confident we will make it through this learning period.

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My hopes are, this will be successful and the changes needed to my body will go well.

My hopes are, I will have this tube removed from out of my nose soon.

My hopes are, I will leave the hospital soon.

with each new breath

My friends this past week I have had unexpected change in plans.

After my appointment last Tuesday with Dr. C., he decided to admit me into the hospital.

Since then, much has taken place and this weekend I have more family visiting.

I plan to post everyday – this is my goal.

For the next several days, I have a favor to ask.

I need some rest, some time to catchup on me.

Comments are disabled today.

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This image was taken October of last year.

As time passes, so can better times, so do our lives, so did my better health.

I beg with each new breath, take me back to a healthier time and to a better place in my life.

Nothing to Hide

My friends the last couple of days I have had unexpected change in plans.

After my appointment this past Tuesday with Dr. C., he decided to admit me into the hospital.

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Since then, much has taken place and these next several days I have more family coming to visit.

At this time, I am unsure how many days I will be in the hospital.

I still plan to post each day as I deal with my current change in plans.

I have nothing to hide from you.

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And after these past few days, I have nothing to hide from the dedicated people helping me in the hospital.

Many of these people have seen all of me recently, as I have – Nothing to Hide.

The assault on my body

From my post ‘lymphedema‘, I received the following comment from fellow blogger and friend Osyth from Half Baked In Paradise. –

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Reading your posts I feel I am looking on helplessly watching an unrelenting assault. I cannot imagine what it must be like for Gary and for your close family and friends. And for you …. for you enduring ALL these painful conditions and each time you turn to walk away feeling a little less racked with pain BANG – there’s another thing to start ratcheting it up and remind you. Helpless I am but I have a strong heart and I send you all the strength I have to help you battle on. And soft hugs. As many as you can stand.

My response –

Osyth, I will admit – some days I find difficulty in living. As you indicated in your comment there is an unrelenting assault taking place on my body. The emotional toll it is taking on Gary is evident as he sees me everyday and experiences what I am going through on a daily basis. It is tough on both him and I. I appreciate your strength in helping me battle on and the soft hugs are always welcomed. Hope your day is beautiful and full of sunshine.

At times, there seems to be an unrelenting assault taking place.  Each day I wake, I know what to expect; I am very tired and drowsy and weak.

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The unrelenting assault is coming from cancer waging a war on my body along with the immunotherapy weakening my immune system and the many drugs my body is having to take that help with pain management and other needed reasons, but also come with side effects that negatively affect me.  Then there is the lymphedema that is currently taking place.  The lymphedema causing pain, and causes inconveniences with walking, standing and sleeping.

The assaults on my body some days are difficult to deal with and very time consuming.  It takes me much longer to do daily tasks and much of that requires help from Gary.  Besides needing help with daily tasks, Gary takes on many other responsibilities including picking up my prescriptions, grocery shopping, cooking, laundry, and this list continues.

Image3The most important item on the list is his never-ending determination to make my life easier.  He is always available for me when I need help.  Some days he struggles watching me as I deal with pain, discomfort and the relentless assaults taking place on my body every day.  Some days he struggles with the idea I may not be here much longer.

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.)

Cachexia

From cancer.net

Weight Loss

Approved by the Cancer.Net Editorial Board, 09/2016

Weight loss is common among people with cancer. It is often the first noticeable sign of the disease.

As many as 40% of people report unexplained weight loss when first diagnosed with cancer. And up to 80% of people with advanced cancer experience weight loss and cachexia. Cachexia is also called wasting. Wasting is the combination of weight loss and muscle loss.

Other symptoms often accompany weight loss and wasting:

Fatigue

Weakness

Loss of energy

Inability to perform everyday tasks

I am certainly experiencing wasting.  Between the 10+ pain I experience and the pain medications, I am fatigued and weak, have no energy and honestly having issues performing everyday tasks.  My pain that has existed since my surgery in January, has increased and spread to the point I am having troubles walking.  Because of this my activity level is near zero.

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You may remember last month in my post ‘My Shell‘, I mentioned I lost 30 lbs.

I now have lost 38 lbs.

I have no muscle mass and my appetite is not good.  I do eat every 2-3 hours and the food I eat is healthy.  Occasionally, I will eat ice cream, but usually I do not eat sweets.  But there are times when I do not want to eat, but I do anyway, trust me – Gary makes sure I eat – thank you Gary.

I informed you yesterday that I will start radiation treatments Monday of next week.  Last week when I had my consultation with my Radiation Oncologist Dr. M., I asked him about my weight loss.  He responded the tumors have a high metabolism and are burning lots of calories.  I had never heard this and found it interesting.  Could he be right and is this the reason for my continued weight loss?

Upon some research, I found an interesting article ‘Why Do Cancer Patients Waste Away? Research Finds New Clues’ that includes information about Cachexia.  Click the article name link if you are interested in reading the entire article.

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Image Provided by: Quality of Life in ONCOLOGY Resource Centre

From that article, here is some important information –

A third of cancer patients die from a wasting syndrome. With new hints, researchers are closing in on what causes it and how to slow it down in order to give cancer patients more time to fight.

Half of all cancer patients suffer from a wasting syndrome called cachexia. Affected patients lose weight, including muscle, no matter how much they eat. The wasting is the immediate cause of about a third of all cancer deaths.

Those stark numbers have spurred research into what exactly causes cachexia in patients with cancer and how it might be avoided. Until recently, doctors thought cancer-associated cachexia was a sign of an energy-hungry tumor taking food from healthy cells. That view doesn’t account for the fact that small tumors can also cause wasting.

I am unsure how to process this information.  Do I have cachexia and am I wasting away?

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.

my new normal life

A couple of weeks ago in my post ‘I had a bad day‘, I concluded with the following excerpts –

I was not having a happy day

This past Sunday, I had a bad day

In today’s post, I write the following –

July of last year in my post ‘Good‘, I wrote the following words –

I honestly feel many people don’t want to hear how others truly feel. 

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I think out of courtesy to others we ask; especially those that are dealing with a physical illness.  If I were to respond to the question differently and say “I feel very bad today, my body hurts and my bladder is burning and I am very tired.”, what would the response be?  I do not really know.  I doubt I would receive the same response as I do when responding with ‘I am good!”

Back when I wrote that post and up until recently, while in public I would pretend to be healthy, pretend to be happy, pretend to have fun and pretend to be normal.

Those days, they have changed.

I walk slower and usually am bent over – the lower back is always in pain and walking at times is difficult.

Yes, I have been out a little bit to explore the new surroundings in our new location.  I take pain medication with me ‘just in case’.

While exploring these new surroundings, I see the other people, the crowds of people who are normal, having fun and seeming healthy and happy.

I have a sense of bitterness, a sense of hatred because these people are normal and living a normal life.  These people are having fun and doing things, going about their lives and enjoying their day, each day.

After my exploring of new surroundings in our new location, after walking slower and usually bent over because the lower back is always in pain, I return home.  The event of the day, just the walking results in more pain, more pain medication, a bad mood and bitterness.

I don’t enjoy my days, there are very few days I enjoy – I am bitter.

This has become my new normal life.

(I wrote this post a couple of weeks ago, and to a certain point continue to have these feelings.  These feelings are negative and serve no good purpose.  My pain has increased and I am being tested.  I end this post with the following quote.)

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