Gary’s Text

Monday’s post was titled ‘Hospice & Home‘, and today’s post I could easily name Hospice House.  I do not need to be confused any more than I already am.

Image1

Because hospice focus is quality of life while I am still here and since Monday my body took a different direction than expected, I am in the hospital – a hospice hospital – or in my case, a Hospice House.

I started having issues breathing due to fluid on my lungs and my pain had increased as well.  Recent pain medication had changed and an increased in level took place.  It is believed my body is not eliminating fluids qs quickly and this fluid is building in my lungs as well as other places.  I currently am off my nutritional fluid IV while this fluid reduces in my lungs and my breathing become easier again.  I entered Hospice House on Tuesday and unsure how long I will be here.  This place does not seem like a hospital, but instead a quiet place to receive peace and treatment.

Image2

I stole these words from a text Gary sent a couple of days ago – (with some editing)

We thought it best for him to receive some medical care for the recent build up of fluids in his lungs causing him breathing issues and to try to figure out how best to get some nutrients into him that won’t cause so much issues with the fluid buildup. The place is very pleasant and cheery and the staff are very attentive and compassionate.

It feels like a dream

Image2

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

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

image1

Image Provided by: More Sky

can’t escape challenges – a Visual Recite

I have added a new category to my blog titled ‘a Visual Recite’.

I have taken many pictures over the years and I share them with you with a recite.

(I disabled comments today, I need more time to respond to Monday’s heartfelt comments that you left me.  I also need time to adjust back home and the changes needed as I continue my heath care here at home.  Thank you my friends for your understanding.)

Image1

can’t escape challenges  –

I feel like life is really short, and it’s important to enjoy yourself and embrace whatever comes your way, whether it’s a challenging day or a great day, just welcome it with open arms. No matter who you are, you can’t escape challenges; they are part of life.

–          Miranda Kerr

…moving the fluid.

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

This past Monday, I had a visit from home health care specialist to treat my lymphedema.  My current treatment involves the wrapping of my legs with hopes the fluid will flow back toward the trunk of my body.  With many of my lymph nodes having cancer, this process may be difficult and slow in progression or not work at all.  If this treatment is unsuccessful, then other treatments will be considered.

Image4Treatment along with exercise hopefully will help reduce the swelling at which time I will wear compression stockings for the unforeseen future.  My understanding is lymphedema can be temporary or permanent, therefore treatment will continue for as long as the lymphedema is present.  I hope eventually to reduce the swelling and improve my leg muscles so I have the ability to walk without the aid of a walker or cane.

In today’s post, I write the following –

For the past 2 weeks, up until this past Monday, my legs were wrapped.  You may remember in my video post ‘The Real Me Now‘, I showed my fully wrapped legs.  The fluid that was once in my lower legs and feet were forced up into my pelvic area and was causing me issues.  First the fluid did not appear to be leaving my body.  The process is this fluid travels through the lymph node system then enters the liver and exits through the urine.

With my usual issue of dealing with constipation vs a normal bowel movement, now my abdominal area was being filled with fluid.  This caused added discomfort and pain to an already beat up body full of other aches and agony.  So, the wrapping of the legs was removed this past Monday with a pending decision as to what the next step would be.

Image1

Image Provided by: Pinterest

This past Tuesday I met with my Oncologist Dr. L. to discuss my lymphedema and current overall pain I continue to feel.  His feeling on the lymphedema is to receive a different treatment that involves skin massaging and is referred to as manual lymphatic drainage (MLD).  I also soon will begin wearing compression stockings during waking hours that should help in moving the fluid.

Yesterday my home health care specialist was here to begin the MLD treatment.  The treatment is being modified some because I am unable to lie flat on my back and laying on my stomach is not an option either.  So, yesterday’s treatment is the first of many and we are hoping for positive results.  Currently my feet, ankles, calves, thighs and waist are filled with fluid.  This makes it difficult for me to walk and many other daily activities we take for granted are now a huge effort for me.  The pain associated with daily routine activities are exhausting for me and drain my energy so fast, I accomplish very little during the day.

20170416_194313 (2)My days are filled with much rest – and that in itself can be stressful to prepare for.

My days are filled with much pain – and that in itself can be stressful to prepare for.

The effort to rest, the effort to treat pain, the effort to deal with everyday activities is difficult for me.

Much of my energy is drained – but I wake each morning to try again.

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. –

Image1

Image Provided by: Pinterest

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.

Image2

Image Provided by: quotesgram.com

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.

Body, Soul & Mind

 

Creative Blog Border

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.

Creative Blog Border

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.

Creative Blog Border

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.

lymphedema

Last month in my post ‘My Feet – A Fresh Perspective‘, I concluded with the following –

Much has changed since I wrote that post back in 2015 except, I continue to appreciate my feet.  What has changed?  It was only 6 weeks ago I was walking 1-2 miles per day with some discomfort.  I mentioned in several posts about my increased pain and how it was affecting my walking.  Rapidly the pain increased in my right groin and the walking became worse forcing me to use a cane and now I am using a walker. Image1 Then came reduced physical activity and most recently a 7-day hospital stay where I remained bedridden for most of that time.  This combination has caused severe edema in my feet and ankles.

My feet continue to function and do their job even though they are swollen and tired – I continue to appreciate my feet.

 

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

In the past 2 weeks, my severe edema has become worse and after communications with doctors at Moffitt Cancer Center, it was determined I have lymphedema.  Image2This is common with some cancer patients when the lymph nodes are affected.  Since I have cancer in many of my lymph nodes and with the recent decrease in physical activity; the lymphedema is now another health condition to deal with.

This past Monday, I had a visit from home health care specialist to treat my lymphedema.  My current treatment involves the wrapping of my legs with hopes the fluid will flow back toward the trunk of my body.  With many of my lymph nodes having cancer, this process may be difficult and slow in progression or not work at all.  If this treatment is unsuccessful, then other treatments will be considered.

Image3

Treatment along with exercise hopefully will help reduce the swelling at which time I will wear compression stockings for the unforeseen future.  My understanding is lymphedema can be temporary or permanent, therefore treatment will continue for as long as the lymphedema is present.  I hope I will eventually will reduce the swelling and improve my leg muscles so I have the ability to walk without the aid of a walker or cane.

Image4

My pain level prior to my recent hospital stay was a 10+, and afterwards I felt the level was about a 5.  Now with the lymphedema, the pain level has slowly creeped up to level 6 or 7 and at times reaching to a 10+ again.  I have an appointment today with Dr. C. in the Supportive Care Medicine group to discuss modifying my pain medicines or taking some other approach to reducing my pain.

Image5

With recent information concerning the spread of my cancer and the pain experienced on a daily basis; I am on a roller coaster of emotions.  I accept what is taking place with my body and my life – I deal with it one day at a time.  What upsets me the most, is the effect this cancer is having on my family and especially Gary.

something changes direction

From my post ‘turning point‘, I concluded with the following –

Upon having my initial appointment with the Supportive Care Medicine, the main doctor, Dr. C., immediately wanted to place me in the hospital due to the extreme pain level and the lack of quality of life.

So, after waiting several hours just to be admitted that were becoming unbearable for me, finally a bed became available and the start of my 7 days would begin.

This is a turning point that Gary and I were looking for that would change the course of my treatment.

Image1

Image Provided by: BYUtv

More to come my friends in future posts to explain so much more.

From my post ‘critical point‘, I wrote the following –

Upon admittance into the hospital, the Supportive Care Medicine team of doctors wanted to change my pain medications and run scans to determine the sources of the difference pains I feel daily.

First, a CT Scan with contrast was performed with Dr. C. specifying thoracic, abdominal and pelvic areas.  As part of this CT Scan, he requested the right groin area be included.  My right groin for the past several weeks has been causing me severe pain.

Second, Dr. C. ordered a full body MRI specifically on the spine.  He wanted to determine if anything out of the ordinary regarding nerves was obvious.

Image4

bezboleznej.ru

In today’s post, I write the following –

Dictionary.com has this definition –

turning point

noun

  1. a point at which a decisive change takes place; critical point; crisis.
  2. a point at which something changes direction, especially a high or low point on a graph.
  3. Surveying. a point temporarily located and marked in order to establish the elevation or position of a surveying instrument at a new station.

Based on my admittance into the hospital, changes to my pain medications, tests and results – there are 2 turning points.  This is turning point 2 –

The results of the CT Scan and MRI came back with additional bad news.

My cancer has now spread into my bones and spine as well as additional Lymph Nodes.  It was only one month ago I had scans performed and these areas were clear and displayed nothing out of the ordinary.  The doctors are amazed at how quickly my cancer has spread. 

So, what comes next?

Following my hospital stay I met with my Oncologist Dr. L. and we decided I would start with Immunotherapy treatment due to my cancer being wide spread.  The Immunotherapy treatment will start immediately.

Image2

The news I received about the test results, honestly, I kind of expected.  I know my body and my body has been telling me something for a while now.

critical point

From my post ‘turning point‘, I concluded with the following –

Upon having my initial appointment with the Supportive Care Medicine, the main doctor, Dr. C., immediately wanted to place me in the hospital due to the extreme pain level and the lack of quality of life.

Image2

Image Provided by: moffitt.org

So, after waiting several hours just to be admitted that were becoming unbearable for me, finally a bed became available and the start of my 7 days would begin.

This is a turning point that Gary and I were looking for that would change the course of my treatment.

More to come my friends in future posts to explain so much more.

In today’s post, I write the following –

Dictionary.com has this definition –

turning point

noun

1. a point at which a decisive change takes place; critical point; crisis.

2. a point at which something changes direction, especially a high or low point on a graph.

3. Surveying. a point temporarily located and marked in order to establish the elevation or position of a surveying instrument at a new station.

Based on my admittance into the hospital, changes to my pain medications, tests and results – there are 2 turning points.  This is turning point 1 –

In the past several months I have written about the extreme amount and level of pain I have experienced.

Image4

bezboleznej.ru

Upon admittance into the hospital, the Supportive Care Medicine team of doctors wanted to change my pain medications and run scans to determine the sources of the difference pains I feel daily.

First, a CT Scan with contrast was performed with Dr. C. specifying thoracic, abdominal and pelvic areas.  As part of this CT Scan, he requested the right groin area be included.  My right groin for the past several weeks has been causing me severe pain.  This severe pain ultimately has resulted in my inability to lay on my back and have my right leg lay flat as well.  I must have the leg bent at the knee to lay flat on my back.  The CT Scan required me lay on my back as flat as possible; the pain I experienced during this time brought tears to my eyes and thank goodness, the process was completed quickly.

Second, Dr. C. ordered a full body MRI specifically on the spine.  He wanted to determine if anything out of the ordinary regarding nerves was obvious.  The MRI process takes more time and again required me to lay on my back and have my right leg lay flat as well.  The doctors and I knew this was not going to occur without some other means.  That other means was placing me under anesthesia so that my body would be totally relaxed.  The MRI was conducted without incident and I was soon back to my room.

20170416_194313 (2)Over the course of the next 6 days adjustments to my pain medications were made.  Some additional slight changes were made last week and the results are my pain is under better control.

Please do not misunderstand me, I still have pain every moment of every day, but I no longer have that 10+ pain.  As I continue to move forward, other adjustments may need to be made.

Turning point 2 to be published soon in another post.