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.

My Feet – A Fresh Perspective

Image1

Image Provided by: TM Forum Inform

I am in year 3 of my blog.

In the early days of this blog, there are posts that received little exposer.

I have a new category ‘Reruns – A Fresh Perspective ’.  This category reposts these earlier posts that received little exposer and a fresh perspective on how I feel about them today.

This post was originally posted on May 16, 2015 –

When I was a small child, I would spend time at my neighbor’s house.  The father of that family would always go barefoot and for whatever reason, I remember what his feet looked like.  He had corns, calluses and cracked heels.  As a child, maybe I thought it was a disease or a lack of hygiene or thought it was normal, not exactly sure what I thought, I just remember how ugly they were.  Fast forward about 50 years and I have my neighbor’s feet!

I have the same corns, calluses and cracked heels – just like my neighbor!  But its ok, my feet reflect the life I have lived, the many years of walking with shoes on but mainly walking without shoes.  I like walking barefoot and walk without shoes any chance I get.  My feet reflect who I am as does my face (that’s another blog post).  My feet reflect my running days; years of running and the many years of walking.  It would be interesting to know how many steps my feet have taken in all my years.

My smartphone has a pedometer that tracks the steps I take throughout the day.  The days I go to the gym and use the elliptical and treadmill, I certainly go beyond 10,000 steps, which my pedometer indicates as very good.  I don’t carry my smartphone on my body at all times, so some days my pedometer indicates I have not taken many steps.  When parking at public places, I am the person who parks the furthest away from the entrance, I always take the stairs and I make sure I walk a lot every day.

So, what’s the point of this post?  I think our feet reflect who we are, certainly where we have been and what we have been doing.  My feet let me dance, my feet let me swim, my feet let me see and reach higher.  My feet have brought me from childhood to adulthood and will continue to carry me to my senior years.

I appreciate my feet even with the corns, calluses and cracked heels.

20160806_075118

A Fresh Perspective –

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 grown and the walking became worse forcing me to use a cane and now I am using a walker.  Then came reduced physical inactivity 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.

turning point

I spent the last 7 days in the hospital with doctors trying to figure out the sources of my many different pains.  Back on June 15, I had an appointment with my Radiation Oncologist Dr. M.  Once again as with my all my appointments, I express the severe pain I am feeling and the receiving of very little relief from the current pain medications I am on.  Many days I am living with a 10+ pain level.

image2

Image Provided by: NaturPhilosophie

Let’s go back several weeks before this appointment and I am expressing my pain frustrations with my Oncologist Dr. L.  It was just 2 weeks before this time, I was walking on the outdoors track for 1 – 2 miles per day.  Now I am having to use a cane and other activities are being affected as well such as showering and dressing myself.  I also now had to give up driving; something I really enjoyed, but now with pain medications and the pain in my right hip-groin that make its way down to my knee: driving is not in my best interest.

So, in the previous weeks that came and went; more scans were taken, blood work drawn for testing, and then there were Main Management Procedures to block nerves and one more very important appointment.  After several months of Gary complaining there must be something the doctors are not seeing, and with pain level as high as it is, I should be admitted to the hospital to find out the source and to treat it.  At this point in time I currently have no quality of life and my days are filled with pain and tears.

image3

Image Provided by: aelis.es

At this point in time, it all becomes blurring and my brain is not functioning well; mainly because of pain medications and my walking with my right leg is all but gone.

At this point in time, there finally comes a suggestion from Dr. M., to place a referral in to the ‘Supportive Care Medicine’ group.  From Moffitt Cancer Center website –

Patients may be referred to the Moffitt Supportive Care Medicine Program for consultation at any stage of cancer, including at time of diagnosis. The program works collaboratively with other health care practitioners to provide the extra layer of support that patients often need while undergoing anti-cancer treatments. While others are working to treat the disease, Supportive Care Medicine focuses its efforts on relieving the physical and emotional distress caused by the disease and assisting with planning ahead.

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.

Spoonful of Sugar

I wrote in yesterday’s post ‘A Few Days in the Hospital‘, that I am in the hospital with the hopes of identifying the source of my extreme intense pain I have experienced for weeks now.  I had a great deal of interaction with different doctors yesterday and substantial amount of information was given as well as what their expectations are by this Friday.

20170416_194313 (2)The usual CT Scan took place Tuesday evening in the abdominal and pelvic area, as this is where most pain is felt.  Wednesday pain medications were changed and increased and administered via IV for a much quicker response.  The purpose is to reduce my pain level from a level 10 to a level 4.  Because of the amount of pain medications, I am taking, my bowel movements are all but nonexistent.  All possible options to start the movement, did not work and as I sit here Thursday morning writing this post, I am very uncomfortable.

We needed a movement yesterday because I am to receive an MRI today.  I will get to the reasons for the importance of this a little later.  With the increase in pain medications it was hoped the extreme pain I experience in my right groin will subside so that I may be able to straighten my right leg while lying flat on my back.  This is currently not the case, my right leg must be bent at the knee for me to lay flat on my back.  Because the MRI requires laying on my back and being very still for a substantial amount of time, it is important the legs not be bent.

Image3What are the other alternatives?  Sedation or in my case Anesthesia.  Anesthesia is not the best because of the risks involved plus the administration and recovery time necessary.  Plus, as mentioned above with no bowel movements there is a chance while under anesthesia, accidents can happen.  But, at this time the MRI is important and therefore needs to take place.

Prior to Tuesday’s CT Scan, I had to drink contrast, which as many of us know too well does not have the greatest taste.  Yesterday of the possible options to start the bowels moving, I had to drink something that once again did not have the greatest taste.

If only I has a spoonful of sugar, I am sure the medicines would have gone down in the most delightful way.

I still plan one day to catch-up on responding to comments and reading your posts.

More to come tomorrow my friends.

A Few Days in the Hospital

My friends, I am in the hospital for a few days.

There have been several events that have happened since this past weekend that I want to write about.

I am behind on writing posts.

I am behind on responding to comments.

I am behind on reading your posts.

I am in the hospital with the hopes of identifying the source of my extreme intense pain I have experienced for weeks now.

Image3

I need relief desperately.  In the hospital, I have a pain pump and other sources available to me to help comfort me in reducing the pain.

My posts may be a little short in size and subject matter the next couple of days.

I have many things to tell you and to write about and comments I need to respond to.

Thank you for your understanding as I deal with this expected turn of events.

Have ‘A Happy Day’ everyone.

so Late so Soon?

Image1

Image Provided by: Recipes for the EFL Classroom

The last several days have proven to be time consuming for me.

I published a post yesterday and yesterday did not respond to comments.

How did it get so late so soon?

The last several days many activities have taken place.

I promise to about in future posts.

Be patient with me as I slowly catch-up on comments.

Be patient with me as I slowly catch-up on reading your posts.

Unknown

Image Provided by: creatoratlarge.com

day # 5

A week ago today in my post ‘for as long as possible‘, I wrote 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.

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.

From this past Monday’s post ‘Failed‘, here are some excerpts –

It is Friday evening and as usual my pain is great and I am feeling little to no difference in my pain level several hours after the procedure was done.  I take my usual amount of evening pills and prepare myself for another rough night.

Gary sees what I go through each day and he is frustrated the doctors cannot find the source of the pain.

Dr. L indicates there are no other tests and the radiation treatment that starts on Monday should help with reducing the pain.

In today’s post, I write the following –

It is Friday again and day # 5 of my radiation treatments.  20170416_194313 (2)I will take the weekend off and then start again Monday for another 5 treatments.  Yesterday after my treatment I met with my Radiation Oncologist Dr. M. to discuss the status of my treatments.  There is nothing new that I reported except that my pain continued to be extreme.  Dr. M. felt if I would receive any pain relief from the radiation he would expect it by the end of next week.  If I do not then we will re-evaluate the current plan and make possible adjustments.

Dr. M. also placed 2 referrals in at Moffitt Cancer Center for me to see other specialty groups.  One group will take over managing my medications and ensure all my specialty doctors are in sync with what is taking place with my care.  This group may also provide alternative pain management treatments such as acupuncture and physical therapy.

The other group is a supportive group that will provide services such as hospice and other needs I may require as I continue with treatments.  Gary and I recently were talking about looking at hospice services.  In yesterday’s post ‘Phone Calls‘, my good friend and fellow blogger Jodi over at THE CREATIVE LIFE IN BETWEEN wrote the following comment –

Terry. Has anyone talked to you about hospice care? I know it scares a lot of people to talk about but it is a field I work in and it is NOT a death sentence. It can give you a fuller LIFE during the journey you are on. They can provide a lot of support physically and emotionally and spiritually and help Gary and help your pain. Just something to consider. Some people use it and feel better and don’t need it any more. Others use it for many months. It is something to think about. Sending lots of love. Xo

Thank you to Jodi and other friends here that support me in so many ways.  Your support, encouragement, thoughts, prayers and hugs are always welcomed and appreciated.

Happy Weekend Everyone!

Failed

In last Friday’s post ‘for as long as possible‘, I wrote 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.

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.

image2

Image Provided by: paulbarford-heritage-the-ruth.blogspot.com

In today’s post, I write the following –

Friday as I am being prepared for the procedure upon taking with the doctor, I find out this procedure will not be a simulation.  The simulation would only last a couple of days and if it worked, then I would go back and have the actual procedure for the long term relief.  This procedure should provide long term relief which may be a couple of weeks or a couple of months.

The procedure takes place and immediately I do not feel any difference.  Considering they gave me pain medication during the procedure, I thought I would be feeling no pain at all.  The pain was just as significant as before the procedure; Gary and I felt very disappointed.  Gary sees what I go through each day and he is frustrated the doctors cannot find the source of the pain.  He asks the doctor who performed the procedure to contact my Oncologist Dr. L. to see if there are any other tests that can be performed – there must be something they have missed for me to be feeling this amount of pain.  Dr. L indicates there are no other tests and the radiation treatment that starts on Monday should help with reducing the pain.

It is Friday evening and as usual my pain is great and I am feeling little to no difference in my pain level several hours after the procedure was done.  I take my usual amount of evening pills and prepare myself for another rough night.  The nightly routine is Gary sleeps in the bed and I sleep on the recliner.  I am unable to lie flat in the bed without feeling significate pain.  The recliner provides me some relief because I can position myself lightly upright, which takes pressure off my lower back pain.

image1

I am sitting in the recliner preparing myself for another night’s sleep and Gary is sitting in a chair next to me and I begin to cry.  He places his hand on mine and I tell him, I feel like I am dying and my body is starting to shut down and I will not be around much longer.

I say to him ‘I have failed you.’

for as long as possible

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

Image1

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.

Image3

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.

Image2

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.