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.

unexpectedly

Yesterday afternoon, I was alone resting.

Suddenly the door opens and there was an unexpected surprise.

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Image Provided by: Board of Wisdom

I am disabling comments my friends, because I need time away from WP today.

You know my appreciation for you all is great and never ending.

Thank you my friends for allowing me to take a day off.

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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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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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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.

Fluid

Last Friday, in 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’s post, I write the following –

Some posts I published in the past couple of weeks included bad days due to pain, despair, guilt, weakness, unhappiness, death and tears.  There for a while I was very down, even to a point of depression.  This period of time was short and now I am in a better place.  I remain optimistic the next couple of weeks will bring some relief in the pain that has dominated my life for months now.

UPDATE – (as of this morning)

I wrote and completed this post earlier this week and as of yesterday it was ready to be published.  I mentioned in yesterday’s post that my life is fluid and changes daily and even sometimes many times a day.

Here is a rundown of unexpected events that occurred in the past couple of days.  Tuesday night I was in so much pain, nothing was helping and I was at my lowest point and just wanted to die, even if it meant doing it myself.  No need to worry my friends, I learned years ago suicide is not an option – therefore this will never occur.

Wednesday morning, Gary calls and speaks with a nurse at Moffitt Cancer Center to discuss my pain becoming worse and what I am experiencing; he asks that my Oncologist Dr. L. be informed.  Wednesday evening, we receive a call from Dr. L. and I discuss with him my current concerns with my health and that I am at the point I just cannot continue living with this much pain.  He was informed of the increase in pain medication and of other issues my body is currently experiencing.

He is concerned about what he hears and immediately places requests for blood work, CAT Scan and appointment to see him for the next day and that I should receive a call the following day after 8:00 AM.  I responded with a sincere thank you for his call and listening to my concerns and for his prompt response to have tests and see him the next day.

Thursday morning, 7:55 AM, I receive a call from Moffitt Cancer Center for the times of my appointments for that day.  Midday we arrive and promptly the blood work and CAT Scan are completed.  (this is after I had to drink my oral contrast liquid – yummy)

Then we meet with Dr. L. to discuss some of my history and the current pain I am experiencing.  I let him know the pain has increased and my daily quality of life is poor.  A physical exam is performed and then we receive the results of the CAT Scan.

The CAT Scan results indicate the current chemotherapy is NOT working – some Lymph Nodes previously identified as having cancer are now larger.

My life is currently fluid.

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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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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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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.

their importance to me

More than one year, a little less than two years my body decided to become sick with cancer.  Well, it mostly likely was sick with cancer before that particular day.  That particular day was in September of 2015, that’s when my body decided to let me know.  Since then, I have seen many doctors, nurses, and other healthcare providers.

Since then, that day in September of 2015, I have had 2 minor surgeries and 1 major surgery.  Since then, I have received 12 weeks of chemotherapy and now am going through another round of chemotherapy.  Since then, I have had a nephrostomy tube and a ureteral stent and I continue to have a PowerPort inserted into my chest.  Since then, I no longer have a bladder or prostate and other male reproductive organs.  Since then, I have lost 30 pounds.

I am unable to provide you with the count of how many needles have been inserted into my body for blood tests, or the number of IVs I have had or the number of days spent in the hospital.  I am unable to provide you the names and countless numbers of prescription drugs I have taken.

During my Chemotherapy last year, I thanked the nurses for assisting me and for being kind and compassionate.

During my stay in the hospital after surgery this past January, 20170116_195426I thanked the nurses for assisting me and for being kind, compassionate and for helping me during a difficult time.  These nurses were the best and made my hospital stay pleasant considering why I was there.

I also have thanked other healthcare providers and doctors.

I go out of my way to thank doctors who I feel truly care about me and my health and want me to be healthier.

I think sometimes being in healthcare can be a thankless job.  I have learned these people; nurses, doctors and other healthcare providers, many of them truly want to help, truly care and truly want us healthier.

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But when we are not at our healthiest, they are always there for us.  This has been my experience, I am fortunate not because I have cancer.  No I am fortunate for those that are treating me because I have cancer.

I let them know their importance to me – I just wanted to share it with you as well.

goodbyes or Thank You

I have in the past had dreams where I woke up and voice recorded what I remember about the dream.  A couple of months ago, I had one of those dreams and though I did not remember a great deal of detail about the dream, I went ahead and voice recorded what I did remember.  It was an important dream, because it involved all of my family and I felt it had significance.

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What was is about and what is its significance?

I was in a large room and all my family were there, everyone.  There were my sons and my parents and my siblings.  There also were my aunts, uncles and cousins, nieces and nephews.  And one other person was there; no longer considered family, but she was there – my ex-wife.

I am approaching each one of them and grasping their hands and hugging them and having a brief chat.  I have no recall what these discussions were about, but I felt it was the last time I was going to see them.  This whole event appeared to everyone including me as not a big deal, it was not exciting nor somber; there was no laughter and there were no tears – it just was the family being together.

Amongst all the family members in line, also standing there is my oldest son, and I bypassed him; I felt I had nothing to say to him.

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You may remember back in March I wrote a post ‘ESTRANGED‘, and I concluded with the following –

One of my sons calls on a regular basis – thank you son.  The other two sons do not call me and in the past I would call them, but now no longer do I call. 

These 2 sons I saw at Thanksgiving and they were aware of my surgery.  These 2 sons I have not heard from since my surgery.  These 2 sons I have not spoken with since Thanksgiving.

Are we estranged?

Again, I just do not understand why?

In the past, I had asked myself, what did I do or not do to deserve the absence from my life; the no communication and the appearance of not caring?

Again, I refuse to blame myself any longer. 

Again, I refuse to cry anymore tears.

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

Since this dream took place, I have spoken with both of these sons and will write about in a future post.  But in this dream, why did I not acknowledge the oldest son?  And what was this dream about?

Is the dream about me saying my goodbyes before I die?

Is the dream about me saying “Thank You” for your thoughts and prayers that have now brought me to being healthy once again?

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I decided to not put more thought into interpreting this dream; I do not think there is a need to.

Perhaps at the time of this dream, I was still blaming myself and angry, especially at my oldest son.  My relationship is different with him than the other two and our differences and similarities go back a long way.

I do believe my sons truly care about me.  It maybe they just do not know how to display it.

the PANIC visit

In my post ‘quality of life…. (or lack of it)‘, I wrote the following –

With the recent move to Tampa, Florida and change in healthcare, comes more doctor visits, appointments and more medications.

The transition to this area is a struggle with regards to finding new doctors and scheduling the appointments.

In today’s post, I write the following –

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One of the previous mentioned appointments was with a new dentist.  I was fortunate to see a new dentist within the first week because once my chemotherapy begins I should not be having any dental work.  There is always the possibility of an infection and during chemotherapy my white blood count is low and therefore more prone to infections.  So, my first visit with the new dentist was an examination that included the usual x-rays that resulted in me having a cavity.  I very seldom have cavities and was surprised to learn I had one.

Okay, two days later and another dentist appointment to take care of the cavity.  Before I write about this appointment, let’s go back about 14 hours –

It is the night before and I am experiencing a great deal of back pain.  I take pain pills and go to bed extremely early – around 7:00 PM.  I am unable to rest or sleep, so around 11:00 PM I am taking additional pills for pain and sleep.  I do finally receive some sleep, but the next morning, I am tired.

Early morning Gary and I depart for the dental appointment and I am excited about using a new smartphone app that I can use for street parking near the dentist office.

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I set the time and pay for two hours the maximum amount allowed.  Gary is also having a dental appointment the same time so, two hours should be enough time.  The dentist is running behind and I become a little nervous about the time, but I know I can extend it from my smartphone.  It is the first time I have used it, so I am a little nervous that maybe it will not work and I will receive a ticket.

Now I am sitting in a chair and receive my injection to numb my mouth.  Oh, did I mention I do not like to go to dentists?  I have Cancer and deal with appointments, procedures, IVs and blood tests – but going to the dentist makes me nervous.

Now I am at another dentist appointment to take care of the cavity – it is time – but the mouth does not feel numb.  The dentist decides to give me another shot.

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Within minutes, half my throat goes numb as does part of my vocal cords.  I am having trouble swallowing and breathing.  I request the staff to get Gary in the room – I need him.  The dentist thinks I may be having an allergic reaction to the lidocaine.  I am not allergic to anything – I receive an Epipen injection.

911 is called just in case there is an allergic reaction – but they are not needed.

I am having a panic attack as the throat is swollen, I am unable to swallow and breath and having difficulty speaking – I am also crying.

After some time to relax, I go through with getting the cavity fix because chemotherapy starts in 2 days.

I am glad I do not have to see the dentist again for another 6 months.