Larger Lymph Nodes

In last Friday’s post ‘Fluid‘, I concluded with the following –

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.

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

Monday, I had my first of two Facet Injections into my spine in hopes of relieving my pain.

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Image Provided by: Pacific Pain Medicine Consultants

I am going to give it a few days, and then I will let you know how I feel about the results of this procedure.

As mentioned in last Friday’s post, it was determined my current chemotherapy treatment is NOT working.  A CAT Scan indicated Lymph Nodes with cancer are larger now compared to the last scan.  There is no indication at this point of any cancer in my major organs; this is good news.

What are the next steps?

My Oncologist Dr. L. is out of town for a while and this is one reason for having the CAT Scan and visit last week.

My next appointment is not for a couple of weeks at which time we will determine the next steps in my cancer treatment.  We agreed to wait a couple of weeks because the first Facet Injection will have taken place as well as my consultation with a Radiation Oncologist.

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Image Provided by: moffitt.org

The appointment with the Radiation Oncologist will determine if radiation will be an available option for my widespread Lymph Node cancer.

Not only are there larger Lymph Nodes; the CAT Scan also indicated there are additional Lymph Nodes that are invaded with cancer as well.

So, what comes next; what do we do?

Oncologist Dr. L. has indicated to me there are other options available to me in the fight again my cancer.

As the weeks’ progress; procedures and appointments will take place that will help determine what these options are.

Months of pain have increased in my body and my emotions have increased in a negative way.  20170416_194313 (2)The past several weeks posts reflected my attitude; and now I have the news that chemotherapy is not working.   Each day I wake and try again.  I try to be strong – I try to be positive – I try to be optimistic.  Some days are better than others, but I keep trying.

I know there are other options.

In the weeks to come, these other options will reveal themselves.

In the meantime, each day I keep trying.

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.

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 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.

This Friday – The Next Stage

The last day of March in my post ‘So, what’s next?‘, I concluded with the following –

Next week will be a busy week; we are moving to a new location, but more importantly test results and doctor’s visits to determine what is to come next in my battle with cancer.

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

Last week was certainly busy as Gary, his mom and I traveled from Orlando to Pensacola to take mom back to the younger brother on Monday.  The next day Tuesday, we hooked the RV to the truck and made our way to Tampa.

We have settled into our new temporary living location at the RV park located on MacDill Air Force Base in Tampa, Florida.  We are fortunate again to be living on a military facility that offers many amenities to us.  Besides the RV park, we have the base commissary, movie theater, gym, and the mess hall & other food establishments on base.  We are also within minimal walking distance to the base’s white sandy beach on Tampa Bay with views of both Tampa and St. Petersburg skylines.  Directly out of the base gates we are greeted with the very nice city of Tampa.

You may remember two weeks ago after my initial consultation at Moffitt Cancer Center in Tampa, I had a series of tests because it appeared my cancer may have spread.  In my post last week ’57 Today‘, I spoke about a brief conversation I had with my new Oncologist Dr. L. about the possibility of my cancer spreading to Lymph Nodes in my lower back also known as the lumbar region.

Friday of last week I met with Dr. L. to discuss the results of the previous week’s tests and my future.

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Image Provided by: moffitt.org

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.

Dr. L. discussed his concerns and we had a conversation about the treatments available and expectations.  It was decided the next step for me is to have another round of chemotherapy.  This time a different drug will be used over the course of the next couple of months.

Once the chemotherapy treatment is completed, tests will take place again to determine the results of the treatment.  Upon the receiving of those results will determine what comes next with regards to my battle with cancer.

Dr. L. is honest and upfront with respect to my cancer.  There is no cure for my cancer; this next round of chemotherapy treatment is to hopefully stop the cancer from spreading or slow down the progression of it.  Once this chemotherapy is over, there are other treatment options available and at that time we will discuss the next steps to be taken.

This Friday, I will begin my next round of chemotherapy, the next stage in my journey with cancer.

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Central Florida Visit

A couple of weeks ago in my post ‘Look Forward‘, I wrote the following –

This past Tuesday in my post ‘Seeking a Home Base’, I mentioned Gary and I are searching for a location to plant roots and use as our home base.  A trip is planned in a couple of weeks and we will be visiting different locations that best meet our needs.  The trip will also include visiting a major Cancer Center located in Tampa, Florida.  A referral is submitted and a consultation appointment is in place.

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Image Provided by: thewholeworldatyourhands.blogspot.com

Currently there is much planning taking place for a future move to a more permanent location and finding a new medical facility for my healthcare.  As indicated a couple of days ago in my post ‘Exactly 1 Month‘, I am feeling good with my recovery.  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 today’s post, I write the following –

We left the Naval Air Station Pensacola RV Park 2 days ago, and stored the RV for the next couple of weeks.

Gary and I are driving to Orlando, Florida today and we will be staying at Gary’s older brother’s home and taking care of his mom while his brother and wife are out of town for a week.  This coming week we will be visiting locations for a possible permanent location to call home base.  I will fill you in on what we are looking at for a permanent residence in a future post.

This coming Monday I will have an appointment with a new Oncologist Dr. L. with Moffitt Cancer Center in Tampa, Florida.  Per U.S. News & World Report’s Best Hospitals for Cancer rankings 2016-2017, Moffitt Cancer Center is ranked #1 in the Southeast and in the state of Florida and #6 in the nation.  After visiting their website and the recent communication I have had so far has me impressed with them and my hope is this feeling will continue after my appointment this next Monday.

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Image Provided by: moffitt.org

In about 10 days we will make our way back to Pensacola.  Depending on our visits this coming week, upon our return to Pensacola, our plan may well be to hook the RV to the truck and drive immediately back to central Florida.

We feel strongly about locating ourselves in central Florida and we still have plans for some future travel adventures.  The period of our initial stay in central Florida depends on my health because the first part of April is when the next round of image tests will take place.  The results of these tests will dictate our immediate future plans upon our relocation.

Look Forward

Friday a week ago, I met with my Oncologist Dr. D. to discuss the option for a possible trial medication for Stage 4 Bladder Cancer and possible Cancer Centers that could administer the trial.  At this time, research on my part is taking place with regards to my future cancer care.  Because I am currently recovering from my recent surgery, no future possible treatments will take place until after the next round of imaging tests; these will take place next month.

This past week I had a routine appointment with my Urologist Dr. P. to discuss my surgery recovery.  Dr. P. is pleased with my recovery and we will have another follow-up appointment early April.

I also met with another Oncologist Dr. A. for a second opinion at a Cancer Center here in Pensacola.  Dr. A. will meet with peers on his facilities tumor board to discuss possible options.  He did indicate that one possible option is radiation.  At this time, no decision will be made until after imaging tests are conducted next month.

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This past Tuesday in my post ‘Seeking a Home Base’, I mentioned Gary and I are searching for a location to plant roots and use as our home base.  A trip is planned in a couple of weeks and we will be visiting different locations that best meet our needs.  The trip will also include visiting a major Cancer Center located in Tampa, Florida.  A referral is submitted and a consultation appointment is in place.

Currently there is much planning taking place for a future move to a more permanent location and finding a new medical facility for my healthcare.  As indicated a couple of days ago in my post ‘Exactly 1 Month‘, I am feeling good with my recovery.  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.

I want to feel great every single day, and honestly, I do not.  7 weeks ago I had a very major surgery and I have to remind myself the recovery will take 2-3 months.  I will be starting my 3rd month of recovery very soon and when it ends; my hope is the minor issues come to an end as well.

I have not felt great in a very long time and I miss those days when I felt healthy, active and invincible.  I was truly happy those days and I feel they are gone for good.  Am I being a little pessimistic and down?  Yes, I am.

What do I have to look forward to in the coming weeks and months?

More recovery, a possible new location and new doctors with new ideas.

I hope also, I can look forward to feeling healthier, active, and invincible once again.

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Seeking a Home Base

Many of you know, last year Gary and I sold our huge house in Dallas, Texas.  We bought an RV and our plan was to travel the United States for a while until we were ready again to settle down permanently.

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My health changed for the worse and the travel adventure across the United States was put on hold.  We are currently living in Pensacola, Florida while my health care needs are taken care of.  Pensacola by no means is where Gary and I want to plant roots and call home; it is just a temporary location.

Our current location is an RV park located on the Naval Air Station Pensacola.  Their policy is an RV can stay for 3 months and then must leave for 2 weeks before returning back to the park for another 3 month stay.  Back in October we spent 2 weeks in another park near here that is also associated with the Naval Air Station, but not located on base.  At that time I was going through chemotherapy and we had to stay here in this area.

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The next time to leave our current RV park, we decided to store the RV for 2 weeks and went on our cruise in December.

December of last year in my post ‘My Message‘, I wrote that Gary and I initially were to spend Christmas with his family at the RV park, but the plans were changed due to unforeseen circumstances.  Those unforeseen circumstances involve Gary’s younger brother experiencing major health issues.  Some of you know Gary’s mom who suffers from dementia lives with his younger brother.  Because of his younger brother’s health issues, we transferred mom to Gary’s older brother in Orlando when we drove there for our cruise.

Now it is March and time again for us to leave this park for 2 weeks.  We again have decided to store the RV for 2 weeks and take a trip to Orlando for several reasons.

Gary’s older brother and wife are leaving for a weeklong trip and Gary and I will be staying with his mom during their absence.  We are also seeking and searching for a possible location to plant roots and find a home base.  We need a home base for several reasons and central Florida is our first choice.  The home base will allow us to have a permanent residence where we can receive mail and a place we can come back to after our travel adventures.

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Image Provided by: homebase.ai

The home base will also allow for Gary to have access to a permanent VA hospital for his medical needs.  Because our home base will be in a different area than our current location; I will need to find another health provider for my healthcare needs.

In 2 weeks, the RV is stored and we drive to central Florida to take care of mom and search for a possible home base.

Once the 2 weeks is over we will return to our current RV park.

Upcoming Weeks

In my post ‘The new confidence‘, I mentioned a new confidence with the new me that is allowing me to get out a little more.  I also wrote about the status of my lower back pain and the future follow-up appointments with my Urologist and Oncologist.

That post was published a week ago, and another a week has gone by and the recovery continues.

The lower back pain is lessoning some, in turn allowing me less disruption in the middle of the night during sleep.

Today and this upcoming next week should reveal perhaps what is to come in the immediately future months.

Today, I have an appointment with my Oncologist Dr. D. to discuss the possible involvement in a trial medication for people who have Stage 4 Bladder Cancer.  We will also discuss the options of where this drug would be administered; Dr. D.’s location or an advanced cancer center.  I have completed some research on the drug used for this cancer trial and ultimately will make an informed decision when the time comes.

Next week has two additional appointments.  You may remember I requested a referral request from my Urologist Dr. P. for a second opinion with another Oncologist.  Gary and I want to ensure we have all possibilities available to us to make an informed decision for my future care.  A second set of eyes from another professional will provide us with the assurance that we have all facts and options available to us.

Next week also finds me having another surgery follow-up appointment with my Urologist Dr. P.  Now that it is over 6 weeks since my surgery, from my point of view, my recovery seems to be going well.  I feel confident Dr. P. will agree with this.

As the temperatures here in Pensacola continues to warm up and the days become longer, the recovery will continue to proceed.  More walks will take place and I will continue to make visits to the gym for mild workouts to help build my strength back.

The upcoming weeks will help in determining what is to come in the months ahead concerning my healthcare and future plans.

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