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.

Phone Calls

A few weeks ago in my post ‘Larger Lymph Nodes‘, I wrote about having a scan and the results indicating the chemotherapy was not working.  The results also indicated the cancer in some Lymph Nodes had grown and previous Lymph Nodes that were cancer free now have cancer.

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Image Provided by: Emedicine Medscape

Prior to receiving these results, Gary and I had a discussion.  He said to me that based on my pain situation and the results of the recent scan both indicate bad news; he wanted to make some phone calls to my family.  I have no issues with this because Gary has always had some form of contact with my family since my health situation started.  My family certainly considers Gary as part of my family and truly respect and appreciate the role he is playing as a caretaker to me.

(note: since the very beginning of my journey with my cancer, all procedures and tests and treatments; all resulted in bad news.  I have not once received good news in the past 1 ½ years.  NOT ONCE)

So, the news of my cancer spreading and growing was received on a Friday; and Saturday Gary made a couple of calls.

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Image Provided by: Kyrene Foundation

He called my twin sister and he called my stepmom.  Why call these two family members?

My stepmom is the caretaker of my dad who has Parkinson’s Disease.  My dad’s health has deteriorated a great deal in the past couple of years.  At times, it is very difficult to understand his speech and because of the medications he is on; he sleeps a lot.  My stepmom has been a part of the family for over 30 years and is in contact with my siblings.  Gary knew in talking with her, she in turn would talk with my siblings.

My twin sister, being the only female sibling, has a close relationship with my mom – they live in the same city.  Gary did not want to call my mom directly as he was concerned about upsetting her, plus a sensitive matter was to be discussed and Gary felt it coming from her daughter, my twin sister would be better received from mom.

What was discussed in these phone calls?

Gary was honest and sincere and direct.  He was caring and sensitive and calm.

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He called these 2 people to let them know the truth concerning my current health situation.  He told them I am in a great deal of pain to the point I am using a cane to help me walk.  He told them I have lost almost 40 lbs. and my appetite is not always the best.  He told them the results of the latest scan.  He told them what is to come with regards to my future treatment and the slim possibility of positive results.  He told them more than likely we would not make it to Texas for Thanksgiving.  He told them he felt it important that they (my family) consider making plans to visit me here in Florida.

My future health situation is unknown and honestly I have nothing positive to look forward to with regards to future treatments – there are no guarantees.

Sphere

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

Sphere

Sphere –

It was a hot summer’s day, I think sometime in June.  And I walking along and alone to where no one had been to before.

As I was in progress on my expedition, there in front of me it stood.  What a great wonder it was – I was paralyzed in my tracks.

Was it real or an image from my imagination?  The size of it alone was astonishing.

I stood there in amazement and then the pulling began.  What was taking place?

Was this to be the end of me?  And why me?

The pulling was harsh and I had no control and therefore the wonder it was; was now a threat.

The nearer it pulled me in the less tired I felt and some type of comfort took over.

What was this that was taking place?

The sphere kept the pulling, soon followed by the relief.

for as long as possible

Last Friday’s post ‘10+‘, I wrote the following –

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Crazy Things My Brain Says – blogger

The pain in my right groin area has increased. This first started with just an occasional pain and now is constant.  This groin pain as well as my other pains is affecting my walking, sitting and standing and I have extreme difficulty sleeping at night.  I currently am experiencing many different pains daily and they are all becoming worse.

My current cancer, pain and health condition were discussed with the Radiation Oncologist Dr. M.

This past Monday’s post ‘simulation then radiation‘, I wrote the following –

You may remember from my post ‘Looking for Pain Relief‘, I mentioned my 2nd appointment with Pain Management, I will receive a Superior Hypogastric Nerve Block.

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Image Provided by: ainsworthinstitute.com

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.  This procedure will be a ‘simulation’; meaning temporary, and if it seems to work, then another procedure will take place for long acting pain relief.

This first ‘simulation’ procedure is scheduled for this Friday.

My hope is between this procedure and the radiation treatment, I can finally find some relief to this incredible pain I have experienced for months now.

In today’s post, I write the following –

It is Friday and today is the day I am looking for pain relief – today is the day I receive my Superior Hypogastric Nerve Block procedure.  I certainly will update you next week with how I feel and the results of this procedure.

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Image Provided by: Emedicine Medscape

Next Monday I start my radiation treatments; another potential for pain relief.  I have no expectations concerning the radiation, except I want something good to come from it.

This past Tuesday, I had an appointment with my Oncologist Dr. L. and we discussed my future treatment once the radiation is completed.  It was decided I would begin immunotherapy with a drug called ‘Tecentriq’.  This drug has recently been approved by FDA and can provide people hope of living longer.  Though this immunotherapy treatment only has a success of extending a longer life of 10% to 15%.  This is a higher rate than some chemotherapy drugs.

This treatment uses my own immune system to help in slowing the tumor growth.  I will receive a treatment once every three weeks for four cycles upon which a scan will take place to determine if the immunotherapy is working or not.  Upon the results of the scan will determine what will take place next.  Either the immunotherapy will be working or not – time will tell.

There are always side effects to any drug, and Tecentriq is no exception.  20170416_194313 (2)Since this affecting my immune system, my normal healthy tissues and organs can be attacked as well.  I also can experience the usual side effects of nausea, loss of appetite, constipation and tiredness.

As mentioned in previous posts, I will again remind everyone.  There is no cure to my cancer and the treatments I am receiving are to extend my life for as long as possible.

Looking for Pain Relief

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.

Mishaps

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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Image Provided by barkingroyalty.com

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

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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Image Provided by: note.taable.com

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

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

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

Sunshine Blogger Award Border

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.

Sunshine Blogger Award Border

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

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.