what comes next…

2 weeks ago in my post ‘my struggle with cancer‘, I concluded with the following –

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.

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

It is now almost 5 weeks since my surgery took place.  I have lost 22 lbs. in weight and though overall the recovery is taking place as expected, there are a few issues I am dealing with.  These minor issues cause some discomfort for me, but with medications I am dealing with them.  I continue to take some low dose pain medications and other medications to help me during my recovery.

This past week I had appointments with my Primary Care Manager Dr. W., Urologist Dr. P. and Oncologist Dr. D.

The appointment with Dr. D. resulted in her performing further research into my immediate future.  I could do a wait and see approach; meaning do nothing and every 3 months have tests run to see if the cancer has returned.  Another approach is a possible trial medication for people who have Stage 4 Bladder Cancer.  This trial uses the body’s own immune system to fight any cancer cells that may be present.  The downside is it could also fight the body’s good cells which could result in other issues.  Dr. D. could administer this or it could possibly take place at a center that specializes in cancer treatment.

I meet with Dr. D. again in 2 weeks and this will give her time to see if my insurance will cover this type of treatment.  She will also research to find cancer centers who can administer this type of trial treatment as well.  With this information, it will provide me additional choices to make an informed decision concerning treatment for my cancer.

My appointment with Dr. P. was a follow-up to my surgery and to check in on my recovery.  We also discussed him making a referral to another Oncologist for a 2nd opinion.  Gary and I feel a 2nd opinion is important to ensure I am receiving the best care possible and having all possible options available to me.

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.

More to come in the future weeks concerning what comes next in my journey with cancer.

Recovery continues with aches and pains related to surgery still present, but a little less with each passing day.

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virtual spoons

The Saturday prior to my Monday surgery I published a video log post ‘Big Day Monday‘.  I received many wonderful comments including one that stands out because of my response back.  Fellow blogger and friend leggypeggy has been sending me virtual spoons ever since that post.

From that post, Peggy wrote the following comment –

A big thank you to you for sharing your journey with us. Also nice to see the landscape you will enjoy during your recovery. Sending virtual hugs and lots of love for smooth surgery and speedy recovery. And yes, be a good patient and the nurses will love you.

I responded with the following –

LOL, yes I know I need to be a good patient – I certainly need nurses loving me. When I feel bad and grumpy, I will think of you and the spoon on your forehead – that will remind me to be good. Thanks Peggy, yours and others support here is important to me. Have a great day!

Her response –

Oh yeah, remember the spoon! It must be a lucky charm. Should I send you one?

My response –

You can send a virtual spoon everyday next week!

Her response –

Consider it done.

So, Peggy sent me a virtual spoon every day the week of my surgery.

In my post ‘my struggle with cancer‘, again Peggy commented about the virtual spoon –

Glad they were able to explain ‘the knot’, but still strange that it happened. This improves the chances of being relatively pain-free as you more fully recover. Sending virtual spoons and hugs for your mental strength.

My response –

Thank you Peggy, physically I feel much better with still weeks of recovery ahead of me. I appreciate the virtual spoons and hugs for the mental strength because I will be honest, at times I am struggling. Thank you for your support and friendship.

Her response –

I figure that right now your body is stronger than the mind, so the spoons and hugs will keep coming.

Peggy continues to send virtual spoons today; a way for her to bring a smile to my face and remind myself that I can and will get through this and everything eventually will be good again.

I continue to heal and recover and have up and down days and adjusting to the new me.  I post every day and just like many of you, Peggy has a comment for me.  Many times, she lets me know she is sending me virtual spoons.  A little joke between her and I, but a reminder the spoon is a lucky charm – and she sends them to me.

She has indicated I should take a picture with a spoon on my forehead – so, here you go Peggy, this is for you.

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Sunrise Offered

Sunrise offered a very beautiful spectacle; the water was quite unruffled, but the motion communicated by the tides was so great that, although there was not a breath of air stirring, the sea heaved slowly with a grand and majestic motion.

– George Grey

I took this video several months ago, early one morning to watch the sunrise.

It had much to offer me.

Since my surgery I have yet to walk on the beach, it is waiting for my return.

One day when feeling a little better I plan to take a walk on the beach again.

One day when I am recovered I plan to watch another sunrise.

And take in what it has to offer.

I struggle with the new me

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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Happy Tuesday

It is not just Valentine’s Day‘, is a post I published a year ago today and it started with the following –

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Image Provided by: imgkid.com

Happy Valentine’s Day everyone, hope your day is a special one.

Today is a very special day for me, not only is it Valentine’s Day, it is also the birthday of my son #2.

He was born on this special day 32 years ago weighing in at 9lbs and 12 ½oz.  Yes, he was a big boy!

In today’s post, I write the following –

Yes, it is son #2’s birthday again – Happy 33rd Birthday Son

Yes, it is Valentine’s Day – Happy Valentine’s Day

For those that do not have a birthday today or celebrate Valentine’s Day –

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Image Provided by: New Year Wishes

Turning 21

Today is the 21st month of my blog!  My anniversary post is something different than the usual posts I write.

Hum, 21 months……

wikpedia.org has the following –

Age 21 –

In several countries 21 is the age of majority.

In all US states, 21 is the drinking age.

In Hawaii and New York, 21 is the minimum age that one person may purchase cigarettes and other tobacco products.

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Image Provided by: Cleveland City Council

In some countries it is the voting age.

In the United States, 21 is the age at which one can purchase multiple tickets to an R-rated film. It is also the age to accompany one under the age of 17 as their parent or adult guardian for an R-rated movie.

In some states, 21 is the minimum age, persons may gamble or enter casinos.

In 2011, Adele named her second studio album 21, because of her age at the time.

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Image Provided by: Wikipedia

Hum, 21 years……

When I was the age 21: I was in my 3nd year of marriage.

When I was the age 21: I had been drinking for several years, 18 was the drinking age back then, it was changed to 21 after I had already turned 21 – lucky me.

When I was the age 21: I had been smoking for several years, I started at 16 and finally quit for the final time last year.

When I was the age 21: I most likely voted for the first time – I always wondered why I had to wait until 21 to vote, when I was required to register for the draft at age 18.

When I was the age 21: I have no idea what my first R-rated film I saw – the best top grossing R-rated film that year was ‘Stripes’ starring Bill Murray.

When I was the age 21: I do not believe I had gambled or been in a casino – I certainly have had my share of visits to a casino in the past several years.

When I was the age 21: I had no best selling album – but that year REO Speedwagon did, it was titled ‘Hi Infidelity’.

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Image Provided by: feelgrafix.com

Today is the 21st month of my blog!  My anniversary post is something different than the usual posts I write.

September 1972 – Black and White by Three Dog Night

September 1972 – a song popular in this month – Black and White by Three Dog Night

This song is about racism, and was inspired by a US Supreme Court ruling that segregation in public schools is illegal.

Interesting facts about Black and White & Three Dog Night

When Three Dog Night recorded this, it came at a time when civil rights was a big issue in America. The message of racial equality was emphasized by their use of a children’s choir in the repeated chorus during the closing moments of the song.

Three Dog Night had three lead vocalists: Danny Hutton, Chuck Negron and Cory Wells. Hutton sang lead on this track.

An influential American folk singer named Earl Robinson wrote this in 1954 with lyricist David Arkin (who is the father of actor Alan Arkin).

The Jamaican reggae group Greyhound recorded this in 1971; their version made #6 in the UK.

Other artists to record this include Gregory Isaacs, Freddie McGregor and Inner Circle.

This information was provided by Songfacts.com

The loquacious BBQ guest

My category ‘Pictures & Stories’ are posts with me writing a fictional, creative short story about a picture.

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The loquacious BBQ guest –

The evening BBQ started with beer, wine or other beverages of choice and pleasant conversation amongst the guest.  As the sun begin its decent into the horizon and the beverages continued to flow, so did the conversations.  But there is always that one, you know the one that hogs the conversations and makes it all about themselves.  But, I can’t help it, I like to talk about me and my advocacy toward the destruction of those like me to aid in one’s appearance.   The belts, the handbags and really the shoes?  Please, do we really need to talk about the shoes?  So yes, the drinking continued and I kept the conversations about me and the others and you felt it was enough.  So, you have the audacity to call the authorities and have me arrested?  And then the unthinkable, the tape started and I became muffled….

Mrmph mmmrpph mmmrrrmph

Touching your comments

It was January 16th when my 10 ½ hour surgery took place.

I wrote about strength I found within myself in my post ‘strength’.

In that post, I voice recorded thoughts the immediate days’ home after the hospital stay.

Here is another voice recorded thoughts now documented for you and about you –

Write a post about that first night after surgery I was still feeling lots of the anesthesia and under lots of pain medication.  And I remember feeling like I was in your comments.  I was in your comments; almost like I am walking around in your comments, the words you have left me.  Not just the recent comments, but the past weeks and months comments; the encouraging words and the supportive words; the words of love and the words of support and the words of encouragement.  It was as almost as I was walking through these comments from all of you, I was touching them and it was helping me with my strength; it was helping me say you are going to get through this because there are so many other people there – there are so many other people out there who are encouraging you and supporting you and praying for you and thinking about you.  And who are touching you in a way that you are going to succeed and you are going to be strong.  And that is what I was doing; I was walking through your comments; almost like a stage and all your comments are sitting there on this stage in big letters.  And I am walking by and I am actually touching them, touching your actual words and feeling them and experiencing them.  That is the only way I can explain it, that is the only way I can explain this dream or hallucination or whatever it is I was experiencing at the time.  But I really truly felt that, that my friends helped me so much – I really, really do believe that.  I know it took a lot for me to deal with my surgery and the feelings afterwards, but I really truly feel that experience, that hallucination or dream or whatever was a big part that started helping me on a good start, on a good note to start my recovery. 

Thank you for always supporting me and encouraging me through your words and comments.

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Freakshows

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Image Provided by: priceonomics.com

The priceonomics.com article ‘The Rise and Fall of Circus Freakshows’ begins with the following –

In 19th century America, gawking at people who were born with deformities was not only socially acceptable — it was considered family entertainment.

P.T. Barnum made millions by capitalizing on this. His “freakshows” brought together an amalgam of people considered to be curiosities — bearded ladies, tattooed men, the severely disfigured, and the abnormally short and tall — many of whom were unwillingly forced into the industry as young children.

In my post ‘I remain grateful (Reader Discretion Is Advised)‘, I wrote the following –

In 5 days, this coming Monday, I will no longer have control of my urination.

Let me be honest, one more time, I have always been honest here on my blog and at times direct.

In 5 days, this coming Monday, I will have a stoma or also referred to as a urostomy, an ileal conduit or urinary diversion.

I will have a pouch or bag on the outside of my body to collect my urine.  I will no longer have control of my urination.

In today’s post, I write the following –

In yesterday’s video post, I mentioned the physical strength is slowly becoming better, but at times my mind is weak when dealing with the changes made to my body.  As with the physical strength, I know the mental strength will increase as well.

A comment on yesterday’s post from my friend and fellow blogger Osyth included the following words –

….your psyche is bound to ricochet back and forth but you are endeavouring and doing your best and that is all you can ask of yourself.

This is a great description of what my mind is going through during the past several weeks and most likely weeks to come.

I am home recovering from my surgery and at times my typing continues to be a little slow and at times the computer is limited because I need to rest.  During rest sometimes I will voice record my thoughts.

About a week ago, I voice recorded the following –

It is in the afternoon and I decided to take a nap and I lay here by myself because Gary is at the gym.  I feel the urostomy bag touch my waist area and I start to cry.  I cry because I do not feel – I no longer feel whole, I feel defective.  I feel like a freak.  I feel unattractive and this is just something I have to become accustomed to.  But these are my feelings right now.  I know there are many people in the world that have bags on the side of their bodies to collect urine and other body waste and maybe other things I don’t even know about.  But this is me, this is new to me and though my recovery from my surgery is going well, my physical body and the emotional part of it is going well also – I still have my moments.   I still have my moments where I just feel different, I don’t feel myself. 

I feel like a freak.

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Image Provided by: priceonomics.com