Nothing to Hide

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

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

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

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

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

I have nothing to hide from you.

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

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

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!

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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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.

I still do my best

I ended last Friday’s post ‘my character‘, with this quote –

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

In today’s post, I write the following –

Yes, bad things do happen; to all of us.

Friday of last week I had my first appointment with my new Urologist Dr. G.  This visit’s main purpose is for the continuation of care for my surgery I had 3 months ago.  Because surgery recovery is going well without complications, I will not be seeing Dr. G. on a regular basis.  Dr. G. is part of the Moffitt Cancer Center where I am receiving my Oncology services and chemotherapy treatment.  Because I am under the care of my Oncologist Dr. L., I would only see Dr. G. if there were an advancement of my cancer in my urinary system.

Due to the pain I have experienced 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 upcoming 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.

Currently my pain management involves taking pain pills and other medications to reduce inflammation.  I perform as much activities as my body allows with somedays better than others when it comes to the amount of stamina I have.

Next week I have another chemotherapy treatment and the following week I will have appointments with a Neurologist and Ostomy Wound Care.  The Neurologist may also be able to help in finding the source of my pain and help in relief.  Remember back in January I had surgery to remove my bladder and other organs.  I now have an ostomy bag that collects my urine.  The opening in my abdominal area to divert my urine is called a stoma.  I am having a mild issue with my stoma and therefore an appointment with the Ostomy Wound Care will help with this issue.

My hope is in the next couple of weeks the pain will be under control without the continuation of taking pain medications.  Currently these pain medications cause much drowsiness and tiredness which results in limitations of activities.

I do not sit in perpetual sadness – but I do sit a lot due to tiredness.

I am not immobilized by gravity of my loss – I believe the energy level will come back.

I do my best to rise from the pain and treasure the gift of life – though difficult at times, I still do my best.

Bad things do happen, and it is how I respond to them that defines my character.

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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

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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.

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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

quality of life………… (or lack of it)

Several weeks ago in my post ‘Pain Explained?‘, I concluded with the following words –

My friends, it is a good bet the cancer is in other Lymph Nodes in my body and based on other symptoms I am experiencing, it could also be in my bones.

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.

In today’s post, I write the following words –

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.

My insurance provider is through the military and they can easily change my location.  Now that we are in our new location, I was assigned a new Primary Care Manager (PCM), who handles most if not all the referrals I need for specialist care.

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goodqualityoflife.com.au

Prior to leaving Pensacola, Florida, I was able to get my Urologist Dr. P. to refer me to see an Oncologist in Tampa for 2 visits.  This is how I have able to see my current Oncologist Dr. L. and have my subsequent tests a couple of weeks ago.

Last week, I had my first visit with my new PCM Dr. T., who is the head of Internal Medicine at the MacDill Air Force Base medical facility.  Now that this visit has taken place, I can continue to have referrals made to Dr. L. at Moffitt Cancer Center.

As mentioned in the beginning of this post, it was thought the pain I have experienced since my surgery may be a result of cancer being in my Lymph Nodes and Bones.

It appears no cancer is in my bones and though I do have cancer in the Lymph Nodes in my lumbar area; Dr. L. indicates it would not cause the pains I am experiencing.

I have 2 specific pains that are causing me discomfort in my daily activities.   Because of these 2 separate pains’ intensity and consistency I have been and continue to be on a large amount of pain medications.  Overtime the pains have increased and so have the pain medications.  My quality of everyday life it not good and I am not enjoying life at all right now.

And now with chemotherapy treatment again, I will struggle more so if the pains are not controlled.

20170416_194313There is much to do here in the Tampa area and so many other activities that Gary and I would like to do – but I am unable to do them at this time.  Between the pain and the side effects of the drugs I am taking, I just cannot do much at all.  This bothers me, I want Gary to enjoy his life and I want to enjoy mine as well.

Now that I have my new PCM Dr. T., I hope to find the reasons for these pains and find a resolution to stopping them or treating them so that my quality of life becomes better.

Pain Explained?

In several past posts, I have written about pain and other issues I am experiencing.

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

The pain is here today

For this one thing I know

As the days become weeks

The pain will come and go

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In my post ‘Exactly 1 Month‘, I wrote the following –

I will admit though, I do not feel excellent as I am having difficulties with some pain and other minor issues.  I am not sure if they are related to the surgery or my cancer diagnoses and if over time I will overcome these minor issues.

In my post ‘It’s 2:16 in the morning‘, I wrote the following –

I also have pains not associated to my surgery and recovery that make it difficult at times to find a comfortable position to sleep.

In my post ‘I don’t know‘, I wrote the following –

So, I have aches and pains and other issues that bring me down and I think to myself; are these pains associated with cancer spreading or they a result of my surgery and I am still recovering; or are they result of inactivity on my part because I am restricted to a certain extent to exercise and being more active?

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In today’s post, I write the following –

A week ago I had a procedure and a CAT Scan performed to try to find out the cause of my continued pain and other issues.  I will be honest here, as I am always honest and sometimes blunt on my blog.  The other issues I have referred to is my bowel movement; yes, we all have bowel movements that is part of our bodily functions.  Mine are no longer considered normal and go from one extreme to the other and at times has caused disruptions in my daily life.  I saw a Gastroenterologist early last week and he believes I have Irritable Bowel Syndrome; most likely resulting from my recent surgery.  He indicated it usually corrects itself over time and medication was prescribed to help with the symptoms.  He also suggested a Flexible Sigmoidoscopy (Flex Sig) to rule out cancer.

Tuesday of last week the Flex Sig was performed as well as a CAT Scan.  The results of the Flex Sig indicated no appearance of cancer in my rectum which was near my bladder, when I had a bladder.  This is good news.

The results of the CAT Scan were not so good.  I have several Lymph Nodes in my lumbar region that have increased in size since my last scan took place in early January.  Because this scan only showed the lower part of my chest, there was one Lymph Node in the thoracic region that is also larger in size.

These results have changed everything.

This past Monday upon my initial consultation with my new Urologist Dr. L at Moffitt Cancer Center, I proceeded with blood tests and a Chest CAT Scan.  Today I am having a MRI on my Lumbar Spine, and Echocardiogram, and a Whole-Body Bone Scan.

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My friends, it is a good bet the cancer is in other Lymph Nodes in my body and based on other symptoms I am experiencing, it could also be in my bones.

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.

the next 9 days

It is Saturday and this coming Monday will be 1 week before I will undergo a major surgery.

When I began this blog back in 2015, the purpose was to write about me, my life, my experiences and those events that have shaped me into who I am today.

I have OCD and therefore need spreadsheets, outlines and formats.  I am not a spontaneous person; quite the opposite – I need a plan.

So, my plan involved an outline of topics and subjects I would post on a particular day.  This changes some due to holidays, birthdays, blog anniversaries, etc.: I have done well at keeping this format.

This plan is changing some for the next couple of weeks because a week from Monday I will undergo a major surgery.

These past several weeks were tough and this week will be tough and the weeks to follow will be tough.

Most of my posts for the next 9 days are about events of the past several weeks, about my current feelings and about my future after surgery.  I write ‘Most’ because next Friday is my monthly anniversary post, and those posts are as you know ‘different from the usual posts I write.’

Let’s start with the past several weeks –

In my post ‘a walnut-sized gland’, I wrote that I started feeling pain and discomfort in my abdominal and pelvic region.  My Urologist Dr. P. thought it may be Prostatitis, because blood work and a CT Scan resulted in nothing out of the ordinary.  I was put on antibiotics and pain medication.

In my post ‘to whine some today‘, I wrote that Dr. P. removed my ureteral stent and found a new small tumor in my bladder.  My pain and discomfort had increased and strong pain medications were helping me get through each day.

This is what occurred last week –

Because Dr. P. specialty does not include pain management and he was unsure what is causing my pain, he suggested I see my Oncologist Dr. D.  This appointment was Wednesday of last week which resulted in a MRI on Thursday and a follow-up appointment on Friday.

Why have the MRI?

The first appointment with my Oncologist Dr. D. was to discuss my recent visits with my Urologist Dr. P. and the pain I was experiencing.  Her first impression is that my cancer may have spread to my nerves.  She indicated the symptoms I am experiencing she has seen before.  My follow-up visit with Dr. D. this past Friday was to discuss the results of the MRI which resulted in displaying nothing out of the ordinary.  Do the results indicate I do not have nerve cancer?  No, cancer can be in the nerves, just not large enough to detect; not yet anyway.

So, what is next?

A PET Scan is requested and hopefully will occur this next week to see if anything out of the ordinary can be found; then a follow-up visit with Dr. D. on Friday.

Thursday I have my pre-surgical appointment at the hospital where my surgery will take place.

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