April 2018 Update

April 2018 Update

Recent Cardiologist visit with Echocardiogram:

Doc said my heart was somewhat warped…
Okay… maybe a lot warped… but still beating…
Sort of…
As the back and right side walls turn into stone –
My heart’s spark plug has again changed its location

to a lower and more central area of the heart
instead of in the left atrium…
moved without notice and left no forwarding address…
causing a bit of confusion of which chamber
should beat first…
sometimes fires backwards…
“v e r y  i n t e r e s t i n g…”
Blood pressure high so “doubled” BP meds…
Was on increased meds for six days…
Had difficulty breathing… restless… slept very little…
heart pounding… skipping beats… well… you know..
Woke up often with arms tingling …. numb… weak
BP 180/107… felt like crap for several days
BP now a bit lower…

Recent cancer doc visit…
Concerned about the lungs…
or rather…
what’s around the lungs…
or maybe wondering what’s constricting the airway
when lungs sound ok with a stethoscope
while funny gurgling – squeaking – moaning sounds
with deep inhales and exhales can be heard

without a stethoscope.
I don’t know…
she doesn’t know either…
Guess we’ll both just wonder…
Trachea a bit swollen…
probably due to damage from too much radiation…
She kind of wanted another PET scan…
I kind of didn’t.
She gave me one of those doc looks that say…
“Don’t be stupid.”
They are too expensive and I’m not ready to face
more radiation any way.

So we’ll wait… till mid-summer…
or maybe a little longer if I continue

my obstinance…

I am once again having to use chemo cream on a few places with obvious
basal cell carcinomas and a few squamous cells in areas of concern…
and a few… umm… well… unknowns…

I’m fine…
No…
Really….
I’m fine…
Stop worrying…
Just don’t listen to me breathe…
or make me walk very far…
or cause me to stand up too quickly…
or check my BP…
I hate the sound of those things pumping up…
just the thought of it makes my BP go up…
and please don’t make me laugh…
laughing makes me cough…
that should be illegal…
I love to laugh…
and don’t expect me to take a deep breath…
And don’t stare at my skin and say… “What the hell is that?”
I can do that nearly every morning all by myself.

No…
Really…
I’m fine!
Stop Worrying!

Stay tuned

It’s April… Isn’t she beautiful…

Chive 3 (1) A

Michael33

Don’t forget to visit my poetry page

www.visionofpoets.wordpress.com

Thank you for dropping by and have a most beautiful day…

Namasté

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Reaching for the Sun

Reaching for the Sun

Yes… I have procrastinated and I have done a very good job of it.  I allowed myself to be intentionally sidetracked from a discussion of the latest test.  So… Now that the holidays have passed… the winter chill is forcing itself through the crack beneath my door with the assistance of the north wind… I suppose it is time for discussion of the results.

My problem with this has been that I have rewritten this post five times now.  The first writing and perhaps complete with the most truth… was far too negative for me to even want to share with my readers.  As I reread this final rewrite… I find it to be quite negative as well and I will apologize in advance.  I am also aware that it is far too long to hold one’s interest, so don’t feel badly if you don’t make it all the way through.

Here are the results in a nut shell… with commentary of course.

Head and Neck findings:  No abnormal uptake in the head or neck… (I’ll celebrate that one.)

Chest findings:  The uptake values for the right hilar node and for the subcarinal node have decreased.  (I was hoping for no uptake at all… but I will take this as very good news.)

There are calcifications in the ‘left’ hilum and left lower lobe of the lung.  (That’s the opposite side from the tumors.  Don’t know where that is heading.) 

Wedge shaped area of atelectasis (collapse) and likely postradiation pneumonitis now at the right lung base with SUV uptake.  Hmmm…What the heck does that mean?  Usually… if it is glowing… it is not a good thing.  That is the same area where the (tumor before last) was located.  Previous PET showed no uptake in that area.

Things not discussed with me when the doc reviewed the report… the things I discovered after reading the report myself… and of course… now I have questions that won’t get answered any time soon.

Accumulation in both kidneys.  Other PET scans did not indicate this so this is something new.  When reviewing my copy of the CD from the scan… I noted a lot of glowing orange to yellow to nearly a white (the worst of the SUV values) in both kidneys.  Cancer wasn’t noted by the radiologist, so I am assuming that the accumulation noted is something else.  I suppose I will assume that is an indication that the kidneys are not functioning as they should.   

Multiple calcifications in the spleen.  Something else new.  I have no idea of the consequences of that.

Multiple diverticulosis.  I know the consequences of this one.

So, when I put all of these things together… what do I have…  a man of delusion who somehow manages to ‘think’ he is going to beat all the odds?… one that has endured cancer in five different areas, some of which had odds stacked severely against him, yet has survived?  Has radiation destroyed too much of the good along with the bad?  Is this the good the bad and the ugly of it all?  Is this what cancer does to human beings?  If it can’t beat you by strangling you with tumors… it beats you with the only sorry forms of treatment that have been allowed to be developed and used on human beings.  (unless of course, you have the means and physical ability to travel to other places that offer… perhaps… a better course of treatment.)

I’m not sure how to answer any of those questions.

Of course, this journal wouldn’t be complete without at least a brief discussion of the cost of cancer treatment.  It is a quite lucrative industry.  If you are lucky(?) enough to survive the cancer… to survive the treatments… will you be fortunate enough to still survive your utility bills… mortgage… food… gas for your twenty year old car that struggles to get you to and from your treatments?  The financial struggle becomes as difficult as the physical struggle for many of us.  Could this be a major factor in the thoughts of those who eventually just give up the fight?

I watch all those commercials on TV asking you to donate to all the cancer nonprofits and it often shows a very touching heart grabbing scene of people with cancer… often using children to grab you by the heart.  These commercials just makes me sicker than I already am.  I have one question for all who may read this post.  Have you… or has anyone you know…  ever attempted to get help from any one of the cancer nonprofit organizations in the U.S.?  Well… I have.  I’ve contacted every one of them.  Want to hear their responses?  Ummm… we don’t have funds available for your region of the country.  Ummm… we don’t help with that kind of cancer.  Ummm… We’re currently out of available funds.  Ummm… We can’t help you because you have extenuating circumstances due to heart disease.  Ummm… Well… you get the picture.  The result?  Ummm… No help from even one single non profit organization.  Funny though how the CEO’s and many others profit quite well from your tender hearted donations.  I know they must help someone… somewhere… but so far… I’ve found no real living human being that has told me so… except the ones on the ads begging you for money.

Yes… I am exactly what you are thinking… discouraged… disillusioned… frustrated… angry… saddened… broke (the piggy bank doesn’t even ‘rattle’ any more)… there are no visions of sugar plums dancing in my head… only visions of glowing metastatic cancer orbs traveling through my lymph nodes… no sugar coating available.

So the real question lies within the heart, mind and soul of the cancer patient.  Does he still have a fight left in him?  Does he still have hope?  The answer is, of course…. yes.  Although that fight and that hope may soon come from a cardboard box beneath the river bridge… the vision of hope still bides inside of me.

I still have hope because I somehow still manage to get out of bed in the morning… although it is much more painful than it was a year ago… and make my way to the coffee pot… although travel time between the bed and the kitchen has increased considerably.  Yes… my lungs are noisy.  They squeak, they moan, they gurgle, they speak to me in foreign languages that for some unknown reason… I can understand.  Weakness often overwhelms me.  I have to just plop my tired ass down in the nearest chair and rest a while before continuing.  I have chills without fever… I often have a low grade fever without knowing why…  I have chest pain continually from the collapsed lung, the damage from radiation, pleural effusion and chronic pneumonia.  So far… I have found no one willing to change bodies with me.   

Now… what’s next?  Hmm…  My doc reminded me that:

 “We have very few options.  This is just the way it is going to be.” 

Wait… What?  Is this some form of reality shock therapy?  Maybe I don’t want to accept that theory.  After all… this hilum and subcarinal cancers have a 5% to 8% or something or other survival rate and I’m still here… drinking coffee and writing this journal.  I may be the next one you see at the Walmart parking lot exit holding up a piece of cardboard that says… “Anything helps”… but I will be standing there with hope on my face and a sparkle in my eye and a smile that will let you know that I’m here to wish you a most beautiful day and that there is always hope.

(Update)… This is a bit graphic so if you’d rather not… don’t read beyond this point.

I am now running a higher temp… overall feeling worse than before… (proceed with caution)….  Coughing up stuff with mysterious hues I am actually unable to describe… and blowing my nose after sneezing produces a large amount of hues of crimson…………. and I thought I had enough trouble already.  This morning at 4 a.m. I was awakened by a loud growling noise.  No… it wasn’t one of the kitties… although I looked around the room to find the source.  As it turned out… the loud enough to wake me growling noise was coming from my right lung.  Nope… not good.

I guess you can figure out that I am hoping for a much better, brighter and healthier year ahead… for all of us.  My apologies for the negativity in this post… but journals should always be penned in truth… and the ‘truth’ is not always pretty.

I thank all of you for your well wishes, your prayers, your healing light, your encouragement and your inspirations. 

A beautiful day to you all.

Namasté

Michael33… Reaching for the sun

49

49

49

I suppose it is time for an update… at least of sorts.  This is the 49th update and or comment and or blathering rant that I have posted on this site.  My deepest gratitude to all of those that have wandered through this journey with me.  You have so often brightened my day.

This week I will be placed back into the chamber of tomography to determine how efficient the latest radiation therapy annihilated the two 29mm tumors that had taken up residency in the hilum of the right lung and the subcarinal lymph nodes.  I know that most who wander here are well versed in the effects of positive thinking so we will just “know” that there will be no glowing orbs in the results of the scan.

Due to circumstances, the follow up appointment with the doctor… to discuss the results, is not scheduled until the following week.  Soooooo… There will be a very long six day waiting period between the scan and hearing its results.  I suppose that is the time that one must keep their mind as occupied as possible.  Of course, my mind is always occupied, but not always with beautiful positive thoughts.  As all of you know… those ‘other’ possibilities and probabilities can still find a way to weasel into our brains and cause concern.  But then… don’t we all love challenges.

Off the subject… sort of.  I’ve been cleaning out and throwing away.  I still have not made an obvious dent in all that needs to go, but after the hidden away things in drawers and closets are disposed of… maybe I can start on the more obvious things…  that are sitting around… without purpose… collecting pounds of dust.  Who knows… I may find “myself” inside a very large trash bag.  Hopefully… I’ll find my way to the recycle bin instead of the one for garbage.  I suppose it could go either way.  Being able to see the bottom of a drawer or the floor of a closet definitely helps me feel a bit better and who knows what I’ll find… buried for twenty years in the rubble.  Just hoping there aren’t any bones.

So until next week after the doc appointment… I’ll probably be relatively quiet… unless I need to prattle my thoughts onto these pages.  As we all know… my fingers can blurt as well as my mouth… sometimes even better.

Another off the subject… Yesterday I was in the yard attempting to bundle some limbs to be picked up by the city.  Breaking some of them so they would not be longer than allowed, one of the limbs snapped and slammed across my eye before I could even blink.  It was very painful.  My blue eye on a background of crimson was not a pretty sight.  I had to keep it closed through most of the day.  When I tried to open it… the pain was just too severe and I couldn’t see anything clearly through it anyway, so I just kept it closed and covered most of the day.  Today… it is still a little painful, but I can keep it open and can see relatively well, but there is soreness surrounding it.  Looking into the mirror at my reflection… it might be best if I kept both eyes closed.  So much for the expression… “eyes wide open”.

So… at this point in life… I can’t use sharp things… I can’t climb trees… can’t climb on ladders with my pole saw… can’t climb around on the steep slopping roof… can’t crawl under the house… can’t crawl into the recliner with the footrest sticking out…  have to be careful around the kitties so not to get scratched or bitten to prevent bleeding profusely… not real good at writing poetry when in pain or weak… so what’s left… what is there that one can do with all of these restrictions…
Oh yeah…….. I know!

Namasté

Michael 33

Being Human

Being Human 1

Being Human

I just came from a WordPress site of someone who is facing the diagnosis of terminal/incurable cancer.  It was quite an emotional, heart felt expression of how it feels to live with such thoughts inside you.  In the comments below of what appeared to be this person’s first post, was a comment from someone who referred to themselves as “Pops”.  He indicated that he didn’t know what to do… that he had read the blog and understands… but was lost.  Isn’t that true of all of us who care deeply about someone having to face such finality?  We’re just lost.  What ‘can’ we do?  Everything we may think of to do for them… seems so insignificant.  I think what most of us actually feel… is helpless!  In this case, I not only feel helpless toward the person with cancer… I feel helpless toward Pops.  What can one say to help him feel better about his own emotions, his own response to the one he loves?

Inside that same post, the writer mentioned the fact that some of those around you cannot handle the situation and their way of dealing with it is to just disappear.  Wow… is that ever a true statement… and it might not be just friends that walk away… it might be family.

So… I’ve been on both sides of this conversation.  What’s the solution?  I’m not sure.  Here’s what I do know.  If we could engage in pure honest conversation about our emotions on both sides of the situation… the distance between us just might be a bit less if we were to truly understand one another’s feelings.  There are so many that are afraid to express those emotions to another… especially to one who is facing terminal illness.  Sometimes it is just so much easier to distance yourself from them.  I think that what the real problem may be… is that those who distance themselves are afraid of causing the one suffering… any additional stress or negative emotions.  Perhaps they become distant to protect themselves from stress and negative emotions.  What at least some of them are failing to see is that those of us facing terminal illness just want to live as much of a normal life as we can… including the interactions of friends and family that we care about.  So just being who you are… who you’ve always been before the illness came to be… is what is most important.

Perhaps I could best express how I feel by saying this:  “Being human”… is not always easy.  Defining humanity includes compassion, kindness, understanding, tolerance, goodness and brotherly love.  Are these too difficult for some humans to deal with?  Loving someone should always be easy, but standing with them through the brume may prove to be far too difficult for some to bear.  Borrowing a couple of lines from “The Invitation” by Oriah Mountain Dreamer,  might best describe how I feel about the interactions between friends, family… and the one whom they care about…  facing the finality of death from illness.

“It doesn’t interest me who you know or how you came to be here.
I want to know if you will stand in the center of the fire with me
and not shrink back.”
 
Well… when you find out you have terminal cancer… the fire is lit.  If standing in that fire with me is something that you cannot do for whatever reason… then please… distance yourself from me.  You must do what is best for your own spirit.  I will understand.  I will still love you… but the truth is… there will be an emptiness within my life without you in it.

There are no real answers as to what one should do… how one should act toward someone that is special to them, who is face to face with terminal illness.  We’re all different.  The only thing I can do is to be myself and do whatever my heart and soul tell me to do.  That’s the only thing I would ever expect from anyone else toward me.  Just be you!  Love cannot be diminished by cancer.  True love, in whatever form it takes… is forever.  I guess, what I am trying to say… to “Pops”… and to anyone finding themselves in this ‘being human is not always easy’ position… the love you feel is most obvious… so what you can do that would help your loved one the very most… is to just be you… and never stop loving.

A most beautiful day to you all…

Namasté

Michael33

My most humble appreciation to the one who inspired this post… and to “Pops”.  Their most beautiful example of “Being Human” may be experienced at:

https://terminallydetermined.wordpress.com/2017/10/21/in-my-time-of-dying/

 

Stop and smell the flowers

Stop and Smell the Flowers

The above pic is of the flowers presented to me from the radiation clinic to celebrate the completion of this therapy session… and its healing.  As you can see… Sophie is definitely taking the time to smell the flowers.  Perhaps we should all do that very thing.

It’s hard to know where to begin on this update.  I’ve finished the 30 sessions of radiation and now entering the waiting period.  That is good news.  I’m very grateful to be here this morning to experience the dawn… to see the beautiful sky above me.  This week, however, has been… well… terrible.  Excuse me… but I felt like shit.  My pain levels were soaring.  I was close to heading for the E.R. several times but have talked myself out of it each time.  The main reason is that I have so many things going on in this moment health wise… that the hospital would have to keep me there for an extended period of time just to check out all the variables.  I have things that have to be taken care of.  Things that must be done… animals that depend on me… and to answer your next question… No… there is no one that is able and/or willing to take care of them.  So… I must endure.  Now… thank you for allowing me to vent.

I am celebrating the completion of this round of radiation… at least in my mind.  I just have to celebrate a bit reserved.  Personally… I’d like to drink too much and raise a little hell… but it would probably kill me… so I’ll wait awhile before I do that… Okay… I haven’t done that in a hundred years… but I still think about it.  How much hell can an old man raise any way?  I’d probably just bore myself… or hurt myself.

Why do we fight what life throws in front of us anyway?  Do you know?  I’m sure that a number of you have had some very large boulders thrown right in front of you.  I know I’ve tripped over a number of them myself.  Sometimes it’s really hard to pick yourself up, dust off your intimates, climb over the rocks and face life head on… with an attitude… but if we don’t… what’s the alternative?  Personally… I still have things to do here on earth… a purpose that perhaps I’m not sure I understand… but a purpose none the less.  Maybe it is merely this journal to share with others… perhaps it is the poetry shared on my other site.  Perhaps it is the love and light that we share with one another.  Maybe it is the smile we share in the parking lot of the grocery store with one who has lingered in sadness… aloneness… far too long.  Whatever that purpose may be… I am willing to face the suffering… the pain… the cancer… the heart disease… the radiation… the side effects… just to share with one who is searching… a smile… a hug… a simple expression of love.  Is that not the truest meaning of being human?

Perhaps there is a lot for all of us to celebrate on this beautiful morning.  Maybe we often fail to recognize all what is beautiful that surrounds us every single day.  Just look into the mirror.  Oh, I know…. you’re all frowning and hesitant to look into the mirror at your own reflection.  Don’t look at yourself with critical eyes… look at yourself as a beautiful creation of our universe… placed upon this earth to share your love… your light… with those who are suffering… who feel pain, both physically and mentally… with those who have been abused… with those who do not know love.  Every one of us is here to ‘know’ love… to share our love with another.  That is all it takes to be a beautiful human being.  I promise… you will feel the enlightenment.

I wish you all wellness… happiness… peace… and love… a beautiful day… and a beautiful reflection.

Namasté

Michael33

Twenty-seven sessions completed

Just a short update to let everyone know that I’m… okay.  It’s a beautiful Sunday morning here in the southern plains and I am extremely fortunate and full of gratitude that I am here to experience all the beautiful that lingers in this very moment.  Okay… so after a day in the mid ninety’s yesterday it is thirty degrees cooler and raining… but it is all quite beautiful to me.

There is not a lot of new to report.  The skin on my back and chest have become quite sore from the burn, but aloe vera gel is easing that pain considerably.  I’m a bit too dehydrated today and very weak with the same complaints as last reported… especially lower esophageal pain.  I’ve found nothing that really relieves it… although the aloe vera juice does help a bit… so I guess it is just a ‘live with it’ situation until the burned tissue on the inside has the opportunity to heal.  That should start about Thursday of next week.  Only three more sessions of radiation remain.  I suppose you all know how I feel about that.

I’m fully aware that the side effects of radiation often worsen after treatment is over and some linger for months… and obviously from my own experiences… sometimes linger for years.  The cough has worsened over the past week… not sure as to why… perhaps more lung damage from the radiation.  There really isn’t a lot of that lung left to damage so I’m hopeful the upper lobe stays functional.  Maybe it’s just irritated.  Time will tell on that one.  Chest pain continues to be fairly constant… sometimes worse than others.

I know you’ll all be pleasantly surprised that I didn’t post a book length update today… but I’ll probably make up for it in the next post.

I thought you might enjoy this post I stole from my poetry site.  It just seems to fit the day.  Please visit me at The Vision of Poets…

Whenitallgoeswrong 3

When It All Goes Wrong

Perhaps it was I who strayed from the course
Or maybe consulted a misguided source
I mixed up my potion a little too strong
What else can you do when it all goes wrong

The reports arrived in bold black and white
An omen in crystal with darkness of night
Singing an ode with an out of tune song
What else can you do when it all goes wrong

What does one do with such heartbreaking news
Should you start smoking weed or turn to the booze
Or should you just face it determined and strong
Whenever you find that your world’s gone wrong

Perhaps it is I who longs for the place
Where life’s simple pleasures come all wrapped in lace
To forget about time when the day is too long
What else can you do when it all goes wrong

The reports arrived in fluorescent hues
Perhaps it’s all there in the choices we choose
When white ravens rise, you just ride along
What else can you do when things are all wrong

Perhaps it is I who bides in a dream
Where all is not nearly as bad as it seems
Sweet Irish Cream, hot coffee… a song
What else can you do when it all goes wrong

Namasté

Have a most beautiful day

Michael33

Update… 22 sessions completed

As of Friday, twenty-two sessions of radiation have been completed.  Only eight more remaining before the long wait begins till we find out how successful they have been.  I am of course expecting complete obliteration of both tumors… and of anything else that’s lurking in there that shouldn’t be.

As far as side effects and symptoms go, they have remained mostly constant.  No better… no worse than last posted with only a couple of exception.  The esophageal contractions and pain have become worse at times.  There is a constant burning pain which covers a third to one half of the lower portion.  It feels like badly burned skin… the kind of burn severe enough to blister and expose the lower layers.  I suppose that is exactly the cause.  I’ve been drinking aloe vera mixed with juice to help soothe the burn.  It helps quite a bit but never alleviates it completely.  I do believe that it is helping to heal the burned areas that it can reach.  I have become a firm believer in aloe vera.  The juice is helping soothe the inside burn while the gel is helping the burn on the skin.  It also is quite affective against many other skin irritations and infections including fungal and yeast infections that can be caused by radiation.  If you have any kind of skin irritation, give aloe vera gel a try.  I have found it to be quite amazing where even prescription creams and powders have been ineffective.

The other increased symptom is an uncomfortable pressure feeling in the chest with addition pain on deep breaths or coughing.  I’m not sure what it is all about or what is causing it to be worse this morning.  Shortness of breath has accompanied this uncomfortable pressure like feeling.  Low body temperature with waves of chills up and down the body isn’t making me feel much better either. Hopefully it will improve as the morning progresses.

Other than the above and all the things that seem to annoy an old man… I am doing okay.  Of course that depends on one’s definition of okay and what you may be comparing it to.  Okay for me is most likely not okay for many others.

Tomorrow is treatment number 23.  That’s a good number… the number of pairs of chromosomes in the human body.  Of course… some of my chromosomes may be a bit distorted now from so much radiation.  In total of all three sessions of radiation therapy… I have received somewhere in the area of 80 radiation treatments.  “80”.  That’s a lot of radiation.  In addition to the treatments… they do anywhere from 2 to 5 xrays every day of treatment… depending on how things line up and on how many times I end up coughing.  Every time I cough they have to stop the procedure and realign me with the machine.  In order to do that… additional xrays are required.  So far in at least 2 to 3 sessions per week… I have had some serious coughing spells.  It makes me feel very bad because the techs have to redo everything alignment wise… but after all… I have a collapsed lung… radiation pneumonitis… fibrosis of the right lung… and cancer in the lymph nodes in the hilum of the lung and attached to the windpipe leading into the right lung.  It only stands to reason that I’m going to cough… a lot.

I’m sitting here at this antediluvian kitchen table with an outside temperature of 58 degrees F… heading for a high around 88.  The temp inside is a warm 75… yet… I am dressed in warm pants, tee shirt and flannel shirt… and still cold.  I’m not looking forward to winter or even to the cold front that is supposed to come through later in the week.  I’ll be outside in the sunshine in a little while toasting myself to warmth.

Ollie says to tell everyone good morning.  He’s busy helping me stay warm by laying on my chest and giving me these silly Ollie looks…

Ollie 1

Hope you all have a beautiful Sunday…

Namasté

Michael33