Tag Archives: Forward

Gary’s Text

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Monday’s post was titled ‘Hospice & Home‘, and today’s post I could easily name Hospice House.  I do not need to be confused any more than I already am.

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Because hospice focus is quality of life while I am still here and since Monday my body took a different direction than expected, I am in the hospital – a hospice hospital – or in my case, a Hospice House.

I started having issues breathing due to fluid on my lungs and my pain had increased as well.  Recent pain medication had changed and an increased in level took place.  It is believed my body is not eliminating fluids qs quickly and this fluid is building in my lungs as well as other places.  I currently am off my nutritional fluid IV while this fluid reduces in my lungs and my breathing become easier again.  I entered Hospice House on Tuesday and unsure how long I will be here.  This place does not seem like a hospital, but instead a quiet place to receive peace and treatment.

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I stole these words from a text Gary sent a couple of days ago – (with some editing)

We thought it best for him to receive some medical care for the recent build up of fluids in his lungs causing him breathing issues and to try to figure out how best to get some nutrients into him that won’t cause so much issues with the fluid buildup. The place is very pleasant and cheery and the staff are very attentive and compassionate.

turning point

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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.

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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.

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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.

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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.

I like routines, do you? – A Fresh Perspective

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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 15, 2015 –

rou·tine

/ro͞oˈtēn/

1. a sequence of actions regularly followed; a fixed program.

“I settled down into a routine of work and sleep”

synonyms: procedure, practice, pattern, drill, regimen;

I like routines, do you?  We all have them in our everyday life; we follow them without even thinking about them.  We have routines in all parts of our lives: personal, work, social, family, relationships.

Think about it, everything we do every day is a routine.  What do you do first thing in the morning upon rising?  How do you dress yourself, left sock first or right sock first?  How do you open your car door and what is the first thing you do in the car, start it first and then put your seat belt on or buckle your seat belt then start the car?  Do you have a routine of what time to eat your meals every day, when to exercise, when to run errands or what day of the week to do laundry?

I like routines, do you?  I like them because for me personally they keep me stable, sane and balanced.  Routines are constant and constant is familiarity: knowing something, feeling close to it and feeling good about it.  Routines that are constant keep us focused and not having to put much effort into them, they are as natural as breathing, sleeping, seeing, hearing and thinking.  They just occur and we let them take us through our day.

I like routines, do you?  Routines can sometimes not be good for us and may even cause harm, pain, heartache, suffering, stagnation and yes even death.  Am I the only one who thinks about these things, about routines and how they control us?  Really think about it.  I have routines I live by every day of my life, both good ones and bad ones.  I allow them to control me to the point, that if one routine changes, it causes me to become disturbed and I let the change in routine ruin my day.  I am trying to change the results I experience due to the changed routines in my life.  Doing things differently is good at times, some routines need to be changed and with that change brings acceptance and freedom.

I like routines, do you?

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A Fresh Perspective –

I still like my routines, but I no longer allow them to control me and ruin my day if they change.  When this post was originally published Gary and I were living in a 4000-sq. ft. home and therefore I had my time and space to myself in the mornings, which I greatly enjoyed.  Today we live in a 300-sq. ft. RV and the morning routine at times changes daily.  And that is okay, I have learned to let go and as they say, ‘Go with the flow’.

286,750

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Today is the 24th month of my blog!  My anniversary post is something different than the usual posts I write.

WAIT!!

It is not just 24 months, but 2 years!

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When I started this blog 2 years ago today, I had no idea where I was going with it and where it would take me.

I just decided at that time 2 years ago I wanted to write about my life; after all I had been thinking about it for; well, all my life.

For this post, I debated on whether I should reveal to you my stats, are they really important?  Do you really care about them?

I do look at my stats, but I don’t put a great deal of time into analyzing them.

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But, it is 2 years today that I have been writing about my life – so I must give some sort of figure that is significant to what I am doing here on WP.

These are the only stats I am revealing –

I have written 752 posts.

If I were to count the words in those post (and I did), it would be 286,750.  (yes, I actually went back to verify the word count – OCD?)

My goal for year 1 – to publish one post per day.  I easily accomplished this goal with some days publishing 2 posts.

My goal for year 2 – again to publish one post per day, I again easily accomplished this goal because my cancer gave me more to write about.

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My goal for year 3 – I am unsure as of today it I can publish one post per day.  It is not that I do not have enough to write about, it is about finding the time.  You might think to yourself since I do not work, I would have plenty of time on my hands – and I do.

The problem is because of my cancer and the effects it is having on me, I am needing to rest more, somedays all day.  Much of my time right now is consumed with rest and sleep and that takes away from my writing.  Plus, the pain pills I am on make me drowsy and this is affecting my concentration and overall thinking.

So, I am making no promises about publishing one post a day.  I have a few ideas about making it easier for me to do so; we shall see if I can incorporate these ideas soon.  Again, my time is being stolen by rest and sleep and the concentration skills are lacking.

So, year 3 begins today and never would I have imagined I would make it this far.  I never imagined I would have written 752 posts.  I never imagined I would write 286,750 words.

I also never would have imagined I would have cancer.

I refer to it as my cancer, because it belongs to no one else, just me.  My cancer is attacking my body the way it wants to, the way it sees fit to.  And right now, my cancer is attaching very toughly.

I am fighting back, but I will be honest, my strength is becoming limited and weak.

I continue to do my best to write and publish one post per day – this is a goal – I need a goal at this time in my life.  No goals leave me with nothing to keep me focus, even when that focus is difficult at times.

I want to thank you all for following my blog and for your comments of support and encouragement.  I have many wonderful friendships that are priceless.  You helped me write those 752 posts with 286,750 words.  I want to continue to write posts and words for as long as my body allows; because I enjoy seeing and hearing from you each day.  I enjoy the communication with you, the many wonderful friends from all over the world.

You brighten my day; and for that I say, ‘Thank you and have a Happy Day’.

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Today is the 24th month of my blog!  My anniversary post is something different than the usual posts I write.

The new confidence

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A week ago in my post ‘what comes next…‘, I wrote the following –

The appointment with Dr. W. was to discuss some issues with pain I am experiencing in my lower back.  I had this pain back prior to surgery and thought it was associated with all the other pain I was experiencing immediately prior to surgery.  The pain is constant and is at its worse in the middle of the night to the point, I am unable to move or get out of bed.  We do not believe the pain is associated to the surgery and could be caused from arthritis, or some other issue.  I hope to resolve this pain soon.

In today’s post, I write the following –

Another week completed and another weekend is upon us.

This past week I had no doctor appointments or other medical related activities.  The weather here in Pensacola was perfect this week and looks to be the same this coming weekend.

The recovery after surgery continues with my daily walks and other activities.

Not only am I recovering physically but also psychologically with regards to the new me.  Remember in recent posts ‘I struggle with the new me‘ and ‘Freakshows’, 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.  The initial uncertainty and apprehension are replaced with confidence and comfortableness.

The new confidence with the new me is allowing me to get out a little more.  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.  Since surgery, 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.

Beside my daily walks this past week, I did attempt to go to the gym for an extremely easy light workout; nothing strenuous at all.  Going to the gym gets me out into a different environment, which I need after weeks of being cooped up in the RV.  This also provides me with an opportunity to build my confidence level with regards to the new me.

The lower back pain I experience in the middle of the night has subsided some, but still persists in waking me in the middle of the night.  This nightly waking is then followed with me needing a change of position; therefore I sleep the rest of the night on a recliner.

In a couple of weeks I have follow-up appointments with my Urologist and Oncologist.  I mentioned in my post ‘what comes next…‘ the possibility of a clinical trial medication for Stage 4 Bladder Cancer and also the possibility of a second Oncologist opinion concerning my further treatment.

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I struggle with the new me

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Little over 4 weeks now since surgery, since the new me was created or updated from the old me.

Many of you know, I now have an urostomy bag on the outside of my body because I now no longer have a bladder.

These past weeks have me struggling at times, less with the physical part, though that can be challenging at times, but more with the mental part.   The changes to my body at times brings me to tears; what has taken place to me and how am I supposed to accept this?

As my body continues to recover and become stronger, I know too will my mind, my thinking and my attitude.

A couple of weeks ago in my post ‘my struggle with cancer‘, I updated you with the most recent information concerning my health and my cancer.  That post received many comments from you with your always welcomed support and encouragement.  Those comments, your comments have great meaning to me and bring me strength in more ways than you can imagine.

My friend Kat over at Time No Matter left me one of those strengthening comments –

IN my belief of healing and beating all odds…is first the positive attitude, and man do you have that one nailed down….your outlook on life up close and personal is so important to your healing….in my opinion of course, and its always right !!! lol second is your support group…you couldn’t be more supported if you were a pair of veins in good Ted hose…LOL you have a loving, caring, devoted husband, your personal family, Roxy, and then all of us…there isn’t a day that goes by your not in my thoughts !!!! We may have never met, but my friend I hold you near and dear !!! And then there’s your medical team…and I think you have a wonderful group of professionals that know their stuff….I know you feel the same as you have literally put your life in their hands and they are caring, loving, knowledgeable group of people…finally there is the sprit, social ideologies, we all believe in our own ways, no ones God, Goddess, Buddha, moon worshiper – whomever/whatever is better than someone else’s, but to me its important to be spiritual…and I know you are……you have cancer on the run….you are over a huge hurdle in your fight…..you’ve got this my friend….one day at a time…one moment at a time….danced in the sliver of a moon for you last night….sending you much warmth, love and moon beams……xxxxkat

I responded with the following  –

You bring tears to my eyes, because I know what you write is the truth. I have this past week have had my challenges mentally as I struggle to accept the new me and still the unknown that lies ahead. I find strength in your words and your friendship. kat, you are special – I appreciate you very much, thanks dear.

So, as you see from her comment and many others I receive, I have great support from you that brings great strength to me.  The physical strength is returning and with your help I know my mental strength will continue to increase as well.

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my struggle with cancer

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This past Monday was 2 weeks since my surgery and my aches and pains from surgery are slightly reducing and my physical strength is slowly increasing.  A few days ago, I had a follow-up visit with my Urologist Dr. P.; he indicated the recovery is progressing as expected and he would see me again in 3 weeks.

In December in my post ‘a walnut-sized gland‘, I wrote about experiencing some pain starting prior to my cruise in December that progressively became worse.  At that time, my Urologist Dr. P. thought it might be a prostate infection and prescribed antibiotics and pain medication.

One month ago, in my post ‘to whine some today’, I wrote about my Urologist Dr. P. removing my ureteral stent and finding another small tumor in my bladder which is not surprising because my bladder cancer has a very high recurrence percentage; this was the reason to have my Radical Cystectomy surgery.  In that post I whined about the increasing pain and discomfort I was experiencing and the tears that flowed from my eyes due to the poor quality of life I was undergoing at that time.

A week prior to my surgery in my post ‘the next 9 days‘, I wrote about my visit with my Oncologist Dr. D. to discuss the pain I was experiencing.  She indicated at that time her first impression is that my cancer may have spread to my nerves.  Pain medications were increased due to the amount of pain I was experiencing and another round of imaging tests were ordered.  The CAT Scan, PET Scan and MRI resulted in nothing out of the ordinary.

Today, I wanted to provide everyone an update on what is taking place with regards to my cancer.

My surgery took 10 ½ hours to complete.  Dr. P. indicated part of my bladder had somehow embedded itself into my large intestine; he had to take extra time to delicately separate the two.  In the previous month when I was experiencing my extreme pain I would complain about having a ‘knot’ in the middle of my gut.  With the imaging tests coming back with nothing out of the ordinary, Dr. P. said this was most likely the cause of that ‘knot’ feeling and because today I no longer feel the ‘knot’, I would agree.

Prior to leaving the hospital last week, I received my Pathology report from my surgery; the results indicated my cancer had spread.  My Radical Cystectomy removed several organs and in males the seminal vesicles are also removed.  My cancer had spread into the seminal vesicles and these glands have many nerves running through them.  This most likely was the reason for the extreme pain I was experiencing prior to surgery and now that pain I no longer feel.  The Pathology report also found the cancer had spread into other lymph nodes in the pelvic region; the surgery also removed all lymph nodes in my pelvic region.

Bottom line is Bladder Cancer spreading to other parts of the body can be difficult to treat and the 5-year survival rate is very low.

While in the hospital, I spoke briefly with my Oncologist Dr. D. and will meet with her again in 2 weeks to discuss the options available in moving forward with my struggle with cancer.

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expectations

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As usual the month of December rushed through with a fury and if you blinked, you missed it!  Christmas and New Year’s Day came and went, and before those holidays; Gary and I took a cruise to the Eastern Caribbean.

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Last week in my post ‘to whine some today‘, I let you know of my follow-up visit with my Urologist Dr. P. that resulted in my ureteral stent being removed.  During that visit, pre-surgery documents were signed and Dr. P. made time for Gary and I to ask questions and discuss details and expectations of my surgery that will take place a week from tomorrow.

To review; my upcoming surgery is Radical Cystectomy, please read my post ‘My Message‘, as it includes detailed information about the surgery.

Here are some expectations concerning my upcoming surgery –

The surgery is performed using robotic assistance, but if issues arise a traditional ‘open’ surgery would be performed.

Surgery could take up to 8 hours to complete.

Once surgery is complete, I will be in ICU for several days.

I will be in the hospital up to 10 days or longer if issues arise.

10-15 lbs. of body weight loss is likely.

A long recovery of 2-3 months will take place.

How do I feel about this surgery, the recovery and the change in my life?

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I have many mixed emotions leading up to this surgery.  I think back when this all started over a year ago, when I noticed a discoloration in my urine.  This was followed by a diagnoses, blood and imaging tests, procedures, 2 minor surgeries, more blood and imaging tests, more procedures, chemotherapy, still more blood and imaging tests and procedures and many, many days of experiencing pain.  The pain continues today and the upcoming surgery will end the current pain only to have me begin experiencing new pain.  The surgery pain should be short lived, but the recovery will be much longer.

For the rest of my life, I will have a urostomy bag on the outside of my body to collect urine.  This entire concept will be something I will grow accustom to over time.

I will have a period of recovery not just physically but also psychologically and emotionally.

With this surgery, my body will have less organs and a new way of life will begin.

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look back

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As this year comes closer to an end, I look back at post excerpts from this past year –

Urologist, I need to see you! –

My new doctor’s visit was last week and for my urine sample; I provided a sample that was extremely yellowish brown with the largest blood clot I have seen.  This scared me a little!

My Urologist: Dr. F. –

The visit with Dr. F. involved me discussing my symptoms and the result of a hospital visit involving a CT scan I had last month.  He indicated I most likely have a tumor on my bladder and it would need to be surgically removed. 

it’s not a dream –

The cystoscopy took place yesterday and the results are I have bladder cancer. 

how I feel and if I can pee –

Before I respond, let me update you on my condition.  The bladder tumor was removed and Dr. F. indicated it looks superficial, meaning on the surface of the bladder.

Good News outweighs Bad News; for now –

The bad news is that the cancer can easily come back.  Every 3 months for the next couple of years, I will be visiting the urologist and having a scope performed to search for cancer that may grow back. 

The next appointment with Dr. F. –

In the past month I have experienced increased burning during urination and in my bladder.  Yesterday I passed a blood clot.  Does this indicate the cancer has returned? 

Dr. F. Follow-up –

Dr. F. indicated some cancer had returned and also I have quite a bit of scare tissue from my last surgery in February. 

in a pickle –

Across the room I was in, is a small enclave that has desks and computers.  I could hear Dr. F’s. voice and I heard the words “Terry is in a pickle.” 

I will be there soon, Pensacola –

At this point, I have no date for the next surgery.  You know the one; where my bladder is removed.  At this point in time, I am assuming I will be having a radical cystectomy.

The roadmap to remove cancer –

Dr. P. informed me that the cancer had spread into my abdominal lymph nodes. 

Stage 4 –

Yesterday, I met with my new oncologist Dr. D. and we discussed my health history and the current condition regarding my cancer.  Upon reviewing my recent CT scan and the related information from Dr. P., she indicated to me my cancer is stage 4.

The number 12 –

Chemotherapy will begin this Thursday and continue for the next 12 weeks.  Today, I am having a ‘port’ inserted into my body. 

The lab experiment –

These scans should help to determine if the nodules on my lungs are cancer or not.  The nodules are small, therefore cannot be biopsied and these scans should help with this determination. 

Bacon Grease –

The immediate days following my 2nd chemo session were not too bad as I am handling the chemo better than expected and hope this trend continues.  The nausea is kept to a minimum, basically non-existent; to a great relieve for me.  I am fatigued the immediate days following my chemotherapy treatment requiring me to be less active than I would like to be.  

Where is me? –

This cancer is beating me down right now and is taking a once happy active person to someone who is unrecognizable to me. 

those around me –

Today I sit for hours taking in those around me.  Today I sit for hours viewing those near to me.  Today I sit for hours receiving chemotherapy amongst others; those around me.

6 weeks remaining –

As the weeks continue and I arrive closer to my end date with chemotherapy, I look ahead to unknowns that soon will reveal themselves to me.  Uncertainties will soon be certainties.  Questions will be replaced with answers. 

wear-down –

Chemotherapy is kind to me in that I am not experiencing many other side-affects.  But the tiredness, it is hitting me hard; very hard. 

wait and see approach –

More than likely the imaging tests will involve another PET Scan to help determine the possible outcomes including complete removal of the cancer in my body, the partially removal of cancer or no effect at all. 

the importance of today –

Today I am receiving my last treatment of chemotherapy.

– the time has come –

My CT Scan took place this past Tuesday and today I have an appointment with my Oncologist Dr. D. this morning to discuss the results.  The most recent CT Scan will be compared to the previous imaging tests that took place prior to my chemotherapy treatment. 

In today’s post –

Surgery to remove my bladder is a little more than 2 weeks away. 

Me (2)

The shift continues

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December of last year, I wrote a post ‘Shift in My ‘Time Continuum’‘.  I wrote that a couple of years ago, a shift started in my life – a shift in my time continuum.  I wrote in that post I felt the time continuum shift would be completed within a year.

Well a year has passed since I wrote that post and the shift continues.  Quite a bit of changes took place this year and these changes or ‘shift’ as I refer to them will continue into next year.  You may remember in my post ‘– the time has come‘, I wrote that in a couple of weeks I would publish a post about what the future holds with regards to my cancer, my health, my care and my life.  That post is tomorrow and it will reveal the continued shift in my time continuum.

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Upon reading the words I wrote in last December’s post about my ‘shift’, I have come to realize maybe the word for this December is ‘evolve’.  With this year’s events, I have learned more about myself and as I continue to learn I continue to evolve.  Since the beginning of this blog, I have written past posts about life as a learning experience and my own personal life of learning.  And with the start of this year I wrote many posts about the ‘shift’ that has continued to take place in my life.  All my posts since the starting of my blog and what they represent have me come to realize maybe life is more about ‘evolving’ rather than about ‘shifting’ or ‘learning’.  Then again it may be the ‘learning’ and/or ‘shifting’ creates ‘evolving’.

From merriam-webster.com –

Learning

: the activity or process of gaining knowledge or skill by studying, practicing, being taught, or experiencing something: the activity of someone who learns

: knowledge or skill gained from learning

Shift

: to move or to cause (something or someone) to move to a different place, position, etc.

: to change or to cause (something) to change to a different opinion, belief, etc.

: to go or to cause (something) to go from one person or thing to another

Evolve

: to change or develop slowly often into a better, more complex, or more advanced state: to develop by a process of evolution

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So, the shift in my time continuum continues and honestly, I think it will do so for a while longer.  The month of December starts today and the days will come and go quickly and very soon 2017 will be upon us.

Next year will bring more ‘learning’, ‘shifting’ and ‘evolving’.