First Treatment December 2018

 

First Treatment

Yesterday was the first treatment.  Things went well I suppose… The alignment went good.  Four x-rays were taken for the alignment from different angles and two of the crosses were re-marked.  The tape placed on my left side had caused considerable irritation to the skin so it was removed.  The tape on the chest was left in place and although it isn’t really irritating the skin… it is irritating me… so I’m hopeful it will be removed in the near future.  The tape is there simply to protect the markings (crosses) from fading so much that they can’t find them at the next treatment.  All of that… because they were unable to use new permanent tattoos due to the fact that the old tattoos are still visible and might cause confusion aligning the zapper machine.  What?  I know that sentence was a little confusing, but you get the main idea. 

Radiation was administered from six different angles from the back, around the right side to the front.  One was administered from the left side back – diagonally through the back to the chest. Seven new trajectories of attack.  Although, through experience… I have come to realize that the first few sessions of radiation just pisses off the tumor.  Yep… makes it madder than hell.  It squirms, pokes, tries to seal off more of the lung than it has already conquered and then… tries to cause as much irritation as it possibly can.  But I’m ready for it this time.  Not that it will ease the physical consequences… but mentally… I’m prepared.  So go ahead you little bastard… let it rip… we’re going to destroy you in the end.

Do I put a little too much of reality into these posts?  Sometimes… when I’m writing about my feelings… about the pain… about all the mental anguish that seems to be borne within all that is “cancerous”… I tend to just tell it like it is… My apology… if it in any way offends you.  But this is a journal of life… life dealing with metastatic cancer… to the degree that no one should have actually survived.  I will always tell it like it is… so… if this sort of truth… this reality of which I face every hour of every day bothers you in any way… then please… don’t continue reading these posts.

There are so many victims of this… one of the most horrible of diseases.  I know that there are many out there that can relate to most of what I have to say… some of them… facing even more difficult challenges than I.  For those of you who have someone you care about in this type of situation, your own challenges can often become nearly unbearable.  Bless you for caring and for showing that you care… I only hope that your blessings are even greater if you are one of the very few who can actually stand in the fire with the one struggling to survive any life threatening illness.  It is never easy for them… or for you.

I’ll keep this post short.  I’m off to the second round of zapping this morning and I’m told I will be seeing the doc as well.  Not sure why she wants to see me today since I saw her last week.  I’m sure I’ll manage to come up with a question or two for her.  I’ve actually gone down hill since the last post… the coughing has become considerably worse… pain has become stronger in various areas of the chest… more congestion… more difficulty breathing… hurts even worse to take a deep breath… and some serious aching in the lymph glands of the neck and under the arms… and sleeping has become nearly impossible.  

The good news is… my lower back is a tiny bit better.  So I’ll celebrate that part… however… I’ll celebrate it very carefully so not to irritate it any more than it already is.

Miracle box

So… when I return home today from being extirpated… umm… I mean radiated… I think I’ll crawl into my cardboard box… get cozy… and sip on a glass of Irish Cream… umm… I mean… – Boost.

Have a most beautiful day!

Michael33

The Journal… the appointment

The Journal… the appointment
December 24, 2018

Thursday was the (final?) alignment day at the radiation clinic and a lengthier than expected conversation with the doc.  She was in a very pleasant… cheerful… yet serious mode.  She sat down on her rolling stool with a smile, slung open my – now larger than life file (it must weigh 20 pounds or so including the hard back binder) and began showing me 8 X 10 glossy color photos of my lung and the trajectories they planned to follow with the zapper machine.  Precise… analytical data on the angles and strength of the intensity modulated radiation.  Then… informing me with a quite surprised look on her face that I had been radiated in 31 different areas of my body.  31… She said it with a mysterious smile on her face as if that was quite an unusual experience…  I didn’t ask.

I told her I called the PET scan folks and complained… (nicely… of course) about not having an estimate of the size of the tumor and asked her if she had received a copy of the additional information.  She said that she had gotten it… smiled… and then called me a bulldog.  Wait………… What????????  Did she really just call me a bulldog?  I really don’t think a lot of our medical professionals are used to having patients that actually want to know every detail they can get their hands on.  She knows that I am exactly that kind of patient and has come to expect that from me.  Like on this occasion… she usually smiles… delicately… and then tells me as much as she possibly can in reference to my questions… and then… asks if there is anything else I’d like to know… which often is followed by my response of… not at this moment… but the day is young.  She is indeed… the kind of medical professional that I wish everyone could experience.  From my vast experience… she is a very rare treasure.  I’ve put my life in her hands many times now… she has helped me beat insurmountable odds… ridiculously absurd statistics that say I should not be here… and yet… I am still here to write about it.  What words within the human language can one use to express their gratitude for that?

It seems that the reasoning behind “not’ giving dimensions of the tumor was because… some of it is probably hidden within the mass that stretches across the lung, so an accurate estimate would be impossible.  Well… I suppose that I can understand that, but I’d sure like to know how big it really is.  What is visibly measurable… is larger than any of the other tumors thus far.  So… disintegrating  those horrible cancer cells needs to start very soon.

Now that I have been somewhat aligned… with a bit of difficulty… I now have four black crosses on my chest… (two of which are fading rapidly)… with nearly 3 inch squares of waterproof tape covering the other two… to protect them from disappearing.  They are evidently quite important to the zapper guys.  I already have a question for them when I return for the first session later this week.  It seems that the bulldog can talk.

Now… How am I doing… you ask?  Wait… maybe that wasn’t you asking at all… perhaps it was just another one of those voices I hear from time to time.  Anyway… I hurt.  Yes… cancer can actually hurt.  I suppose it depends on where it is located… but this one hurts in several places.  It also is beginning to hurt to take a deep breath… all across the right side of my chest to the ribs just a few inches below the arm.  That pain on the right side is what I worry the most about… although… just right of center on the chest is where the tumor is located.  The mass that extends across the lung to the chest wall lining is what bothers me most at night while trying to get comfortable enough to sleep.  I usually can’t sleep for longer than 30 to 45 minutes at a time… then I have to flop around for 20-30 minutes trying to find another position that doesn’t put pressure on any of the involved areas or that causes shortness of breath… or heart arrhythmia.

See how much fun I have?  I’ve been having considerably more atrial fibrillation lately as well.  I am beginning to realize that this tumor and associated mass, blocking air flow to the lung… also blocking nerves and blood flow… is a major factor in the increase of my blood pressure over the past few months and is also affecting the heart function itself.  It is definitely time to shrink that glowing piece of crap lurking in the hilum and hopefully the lung can do some self-repairing once the blockage is opened.

In the meantime… I’m going to enjoy every moment of every day in the very best way that I possibly can.  I’ll be listening to some really good music… pickin the guitar a bit from time to time… maybe banging on the keyboard a little now and then… and of course… petting all the furry creatures that have wandered near to me for a variety of unknown reasons… but I am grateful for them every day… whatever their reasons for finding their way to me.

Curious 1

Wishing you all a most beautiful holiday season… happiness… good health… and of course… HOPE!

Michael33

The Journal December 19, 2018

The Journal… December 19, 2018

I hobbled and groaned my way to the coffee pot this morning.  No improvement on the back pain today so far, but I am hopeful.  In the meantime… it hurts to walk, it hurts to sit, it hurts even worse to get up and get down.  It hurts when I cough and well… I have lung cancer, pneumonia and pleural effusion… all of which makes you cough.  Steps are out of the question.  I have one step at the entrance to my house and I have to pause and ponder and prepare for excess pain before I navigate it in either direction… in… or out.  In and out of the car is excruciating. 

I’m dreading tomorrow’s appointment a bit because I will have to climb up on and then lay down on the hard zapper bed.  It feels like it is actually made out of concrete… and leaning back, putting my arms over my head for 15 to 20 minutes… then having to raise up to a sitting position is not going to be a pleasant experience.  One would think that a tumor surrounding the hilum of the lung, squeezing the opening to the lung so tightly that it has caused it to collapse, allowing pneumonia to form in the middle and lower lobes… with an unknown mass stretching all the way across the lung… would be sufficient torture for one human being.  But… I guess it isn’t.  I needed more pain in my life.  I’m hoping for improvement throughout the day today, so that I may be able to do those necessary movements without yelling obscenities… or choking whoever might be standing closest to me at the time.  The technicians are all great guys and I wish that I had met them under different circumstances, but they all are quite familiar with me after more than 100 radiation sessions already behind us.  After I complete this series… surely I will glow in the dark.  At least then… maybe I could find myself.  (okay… that was a little weird humor, wasn’t it?)

I started to post a picture of the crosses tattooed on my chest… but then… I decided my readers might not be ready for such… ummm… peculiar – photographic artistry.  There are indeed… some things in this world that some people just don’t want to see.  So I spared you the awkward site of my beautiful black crosses… creatively drawn in felt marker… around my rib cage.  Trust me… you’re glad I didn’t show them to you.

It’s a rainy, dreary day here in the southern plains… of course it is… but gray skies have never brought me down from my normally upbeat disposition.  So… I will just enjoy the rain… find comfort and warmth in the gray blanket covering the sky… and know that the birds and all the beautiful creatures outside will enjoy quenching their thirst.

Now… I’m going to have a bit of Irish Cream with my morning coffee.  Maybe spend a few minutes with the guitar… it always calms the kitties.  Wish you could join me.

Simon Relaxing 1

Have a most beautiful day.

Michael33 

First Alignment 2018

If you haven’t read the previous post “The Report”, you might want to check out the first few paragraphs in order to know what’s going on with this post.

Monday was CT alignment day.  Had to drive across the river to have it done because where they used to do them changed hands and is now “corporate” operated and I am presuming that they either wanted to charge too much for the independent oncology people to use their equipment or they just don’t want to share.  So, because of that, I came into contact with some different folks and one in particular employee had her light shining brightly with friendliness and kindness for everyone who encountered her.  It’s always nice to see that because it seems to me that it is becoming far more difficult to find that kind of person in our world.

I once again have three black crosses adorning my rib cage… one very large one in the center and one on each side.  They were drawn with a permanent black marker.  They must stay there until I go to the oncology clinic to align the zapper.  I have asked the question several times of what they are actually marking with the crosses… but always get some vague answer like… we’re marking where the tumor is… but then they add things like… the doc will line it up better when she reviews the CT.  So… I still don’t really know what the crosses are for.

A funny thing happened on the way to the coffee pot the other day.  I dropped something on the floor and had to stoop over to pick it up… suddenly… unexpectedly… I couldn’t straighten back up without severe pain in the lower back and hip area. 

Hmmm….

So what does the old man do now?  I walked slumped over to the nearest chair to hold on to.  I straightened up with great difficulty.  I tried walking… only to find that just that simple act was nearly impossible due to the pain.  Today… four days later… I’m still enduring severe pain in the lower back, right hip and down the back of the right leg.  Probably involving the sciatic nerve… pinched somehow in the spine.  There are moments that are very difficult to move at all.  Not sure what to do from this point on.

Now… I’m not saying that I became even more discouraged with life in its current form than I already was… but…. really??????????  I know that believers always say that God won’t put on you more than you can bear.  Hmmm………..?????  Let me think about that for a while.  I wonder about those who are so willing to voice those words and just how much they themselves have had to bear in this lifetime.  Now… those who say that you should turn your pain… your sorrow over to God… well… perhaps I’ve done that a number of times.  I think that it actually boils down to what works for you.  I think that if religion works for you… then please delve into it as deeply as you possibly can… If it doesn’t… well… you must search for another pathway that you can follow that fills your soul with love and kindness.  Myself…?… well… I won’t go into what I believe in this moment… but let me share this with you… I believe that there is something within our universe… or perhaps within all universes… that is far beyond what we understand.  Maybe we never will… maybe we will know tomorrow… maybe we will see tomorrow before the dawn.  Just please… don’t linger in yesterday.     

No… I’m not going to wallow in my misery… nor am I planning any kind of pity party for myself.  Believe me… I am so very aware that there are those who are suffering far worse than I could ever imagine.  As a matter of fact… I saw two such individuals this morning at the CT imagining ‘store’.  When you think things in your own life completely suck… stop for just a minute and look around you… outside your ‘self’… it won’t take but just a single moment to see how very fortunate you really are.  

I have love and kindness right next to me… every single day.  Knowing that you are loved by another is one of the most beautiful emotions of being human.  I’m able to crawl out of bed and find my way… no matter how slowly that may be… to the coffee pot.  I’m able, though lately… I won’t lie… has been quite difficult at times… to feed and share my love with all of my furry creatures that have found their way into my life.  Why on this earth would I ever doubt the multitudes of treasures surrounding me in this lifetime?  Why would I ever?

I must admit that there are those in wonder of my existence.  Metastatic cancer in so many places… so many times… and yet… still here to blather my words all over this page and torment those who have been drawn to follow me… to support me… to encourage me… to brighten my every single day… for whatever reason.  My gratitude to you lies far beyond any words that might find their way onto this page… yet… I feel certain that most of you feel the gratitude I feel… in your heart… and I thank you for “knowing”.

My next appointment is later this week.  Final alignment on the zapper machine and a most likely long conversation with my dearest oncologist.  I’m looking forward to the opportunity… I’m not quite so sure of her excitement of encountering my multitude of questions.  I must admit, she seems to have adapted ‘fairly’ well to my peculiarities and unusual questions along the way.  Most of my doctors… have not.  But one thing is for sure… I’ll be filling you in on the questions… and her answers… soon after the encounter.

Thanks to all of you who dropped by… and the conversation…

A most beautiful day to you…

Namasté

Now….. I’m going to crawl into my basket… curl up in my blanket… and rest…

Sophie nap

Michael33

 

The Report

So… I awoke this morning… actually… I slept very little but we’ll say I awoke this morning with visions of sugar plums dancing in my head… oh… wait… those weren’t sugar plums at all… they were large glowing blobs in and around my lung.  Crap!!!

I was going to start this post with the actual report on the PET scan, but it is most confusing and probably wouldn’t mean much to most of you.  So, I’ll just add a pic or two and fill you in on what the doc said about it… and then of course… add my two cents worth.

I am most usually able to do a pretty good interpretation of the results of these scans from the reports and the disk… this time… was an exception to that rule.  As it turns out… there seems to be a few professionals having a bit of difficulty with interpreting it as well.

Glowing blob 3

Impression:
New large area of consolidation/mass effect right hilum which is intensely hypermetabolic compatible with right hilar neoplasm with post obstructive atelectasis or infiltrate in the lower and upper lung zone – progressed… with neoplastic involvement extending to the right lateral mid chest.   

New right pleural effusion.

Mass pic 1

See… I told you it was confusing… and that’s just the part without all the details.

Wait!!!!!………………………. What?????

There must be another page to this report somewhere…. where the words “Cancer Free” appear.

Okay… What this report means according to my radiation oncologist…

Tumor  surrounding the hilum of the right lung, obstructing air flow to the lung causing it to collapse… the tumor and the mass are blocking air flow and blocking the lung from draining which, as a result… is allowing fluid buildup in the lower lobe (pneumonia).

The consolidation stretching from the hilum to the pleura (external lining around the lung at the rib wall) is “most likely” the collapsed portion of the lung… but can’t be positive of what it really is.  Why it has an SUV value at the wall between the ribs… has not fully been addressed… (soft tissue density with SUV of 2.7)…

(((Obviously… I have multitudes of questions about that last paragraph)))

New area of right pleural effusion…

The original report did not include the size of the tumor which is not the norm.  Evidently… it wasn’t included because it is likely that some components of the tumor may be hidden within the consolidation/mass and would be impossible to measure accurately.  The part of the tumor that ‘is’ measurable… is larger than any of the other tumors I have endured thus far.  It’s full size remains unknown.

Okay… take a deep breath Michael… if possible.

So….. I’m intensely hypermetabolic… but of course… we all knew that already… glowing in the dark is one of my specialties… well… perhaps I should clarify that… or… maybe I should let you use your own imagination.

Post obstructive atelectasis – progressed… doesn’t sound like anything that will keep me down for long… after all… I’ve been obstructed for one reason or another all my life.

Now… the neoplasm extending from the hilum to the right lateral mid chest is a bit concerning, especially since I’ve had considerable pain in the right side of the rib cage.  I don’t know if that means that there has been damage caused in the pleura, or the tissue between the ribs or the rib cage itself… but I do know that it is often quite painful.  The fact that it was given an SUV value at the soft tissue between the ribs is both puzzling and troubling.

My breathing is ‘fairly’ normal but with some difficulty and at times… great difficulty for reasons that were not apparent.  Perhaps it is no longer – ‘not apparent’.  The new area of pleural effusion (an unusual amount of fluid around the lung) is a bit disconcerting as well, but not unexpected considering the other data from this report.

I did ask the doc about my blood pressure… 178/104… which is about what it has been for the past six months.  She replied… “You have a lot going on.”

Yep… I do.

Funny though… I’ve seen three other doctors in that time period and none of them have attempted to investigate the cause of the high BP… including primary care and cardiologist.  It would have been nice to catch this tumor while it was a bit smaller and before the obstruction occurred.  Ahhh…. modern day medicine in the U.S… isn’t it great?

Hmmm…

Monday morning I will be having another CT to align the tumor with the scanner.  I suppose that means I will again be adorning black crosses in various places around my rib cage.  From that point… everything is “to be determined”.

I’d like to express my deepest appreciation for all of your prayers, well wishes and healing light.  Obviously… they have been very effective or I would not have survived through this ordeal… so… thank you with all my heart for your continuing support.

My resume with cancer…
Lymph nodes… right side of neck
Base of tongue
Lower lobe of right lung
Right Hilum
Subcarina

And now… intense hypermetabolic lesion in the perihilar region with large mass from the right hilum extending posteriorly to the lower lobe and anteriorly to the right pleura with soft tissue density… post obstructive pneumonia and pleural effusion.

Blah… Blah… Blah…

Now we all know that I’m not going to let a little thing like that get me down.

My mind is a bit muddled in this moment, but as you all know… I will find a way to find the positive in all of it.  Hope!  I didn’t start the Vision of Hope 33 site to lose hope… to give up… to let a little thing like another shitty prognosis make me throw in the towel.  It will never happen.

So… what does all this awful sounding crap mean to the one filled with hope… the one searching desperately for the clowns and the marching bands… finding only the frightened “Trapeze Swinger”…

You might listen to this song by clicking the link below to have a better understanding of that last sentence.

“Trapeze Swinger”

Caution:  the song has one bad word in it… but you should listen to the heart… poured into the music… when you have time… it is 7:58 long…

I know that a lot of my posts are about the physical aspects of cancer… where its located, the tests, the results, the treatments… but there is such a great deal more to cancer than just the physical.  I hope to post more often along this segment of the journey to explore the other aspects of this horrible illness.  It affects so many around us.  When you listen to that song… it helps one to realize that what we do, what we go through in our happiness, in our sorrow, in our suffering… affects all of those that surround us… yet… most often… we struggle to find a way to express it in words.

I know that in the coming journey… I will meet some amazing people… some with enduring courage that I can only imagine… those who are so very willing to share their kindness, their encouragement and yes… HOPE!  I have heard many amazing stories through this journey and expect to hear more in the coming days and weeks.  Thank you all so very much for standing with me in the fire… that is a most beautiful place to experience the birth….. of HOPE!

Now……………………. Breathe…………………. deeply……………………..

and go listen to the “Trapeze Swinger”

Come on now… I know you can find the time to listen to it in its entirety… maybe while you’re doing laundry… or dishes… or sitting there pondering your next post… or just sipping on your first cup of coffee.  Trust me… if you listen to the words… it will affect you and your writing… in some way.

Miracle relaxing

Wishing you all a most beautiful day!

Michael33

December 2018 Update

Just a bit of an update.  I know… I’ve been really bad about keeping this journal up to date and letting everyone know what is going on in the world of this cancer patient… victim… survivor… and sometimes journal keeper.  What holds me back from posting here is that… most of what I would have posted is negative… and it seems to me to be an oxymoron to post in print about all the negative health issues I face on a site entitled… The Vision of Hope.  Besides… I don’t want to read negative things about someone all the time either… nor do I want to write them.

So… here’s a brief summary of past events… sort of.

As you all know, I have chronic lung and throat problems mostly due to radiation treatments.  A persistent cough is always present that I tribute to those very reasons, so I tend to just try to deal with it… ignore it as best I can.

On Thanksgiving Day I fell… Quite ungracefully.  No… it’s never a good thing to hear a loud thud and find an old man lying in the floor… and no… I don’t have one of those “Help!  I’ve fallen and I can’t get up” buttons.  I tried to deal with the pain on my own, but considering I have so much lung trouble already, I didn’t really want to wait around and see if I damaged anything important.  So the next day, I went to a walk in clinic to see if anything was broken.  There wasn’t… only badly bruised and internal contusions around the right side of the ribs, the shoulder and the arm.  I’d heal.  However… following the x-rays and the doc informing me that I was just the clumsy old man I already knew myself to be, he pulled out a sheet of paper with a picture of an x-ray of my right lung, scooted his stool on rollers closer to me… and said, “Have you been coughing?”…

I replied, “Yes.”

He asked, “For how long?”

I replied, “Quite some time.”

He then held up the piece of paper and said, “See this… this is your right lung and there is an infiltrate in the right lower lobe.”

After pausing in silence while staring at the paper he was holding up… a mere copied printout of an x-ray that meant little to me in that form… I very intelligently responded with….

“Okay!?????”

The doc looked at me very seriously and said, “There’s no way for us to know what the organism is that is infiltrating your lung… so I am prescribing an antibiotic to attempt to prevent it from becoming bacterial pneumonia if it has not already done so.”

Me again… “Okay!?????”

Then he added, “You need to get a chest x-ray within the next few days and see your primary care physician as soon as possible.”

“Okay!?????”

Now… Here’s where we run into trouble on that one.  First of all… I misguidedly thought that he had just done a chest x-ray to see if anything was broken and he found the “infiltrate” in the lung.  What is another chest x-ray going to do that this one didn’t?  I told him I was supposed to have a PET scan in a couple of weeks and he said “Good”… which to me… could possibly mean… “Bad”.

So… I didn’t want to go through all the red tape involved with seeing my primary care doc at the VA without an appointment, so I called my radiation oncologist and asked her to go ahead and get me scheduled for the PET.  She did… It happened yesterday.

The medical facility where I have been going for PET scans for the past 5 years has changed hands and the new management has added a whole bunch of red tape to being admitted for anything… even outpatient shit.  (excuse me)  And now they require co-pays up front.  They told me on the phone that the procedure cost $6,300 or something close to that figure.  Then she told me what Medicare allowed them to charge… (in other words… they’re making huge profits off of those who are uninsured)…  then she told me what I would be responsible for at the time of my appointment.  My first thought… and what I wish I could have said to the ‘new management’ was… So… I guess less fortunate people just die wishing they could dig up enough money to pay for treatment… but I knew that this person on the phone was not the one responsible for this unfortunate requirement… so I kept my thoughts to myself.  Now… don’t get me wrong… if you cannot pay them what they ask… they will be happy to turn you over to a collection agency that will proudly and persistently hound you to pay your bill to the point where you wish you hadn’t had the procedure done in the first place. 

Welcome to modern day health care in the United States… Where… if you have plenty of money… it is indeed… America the beautiful.  To those less fortunate… it can be a very ugly America.  If Medicare didn’t decrease the cost of this test tremendously… I would not be able to have it done.  Period.  I would not be able to have radiation treatments.  I would only be able to sit quietly… somewhere in America… and die.

I kind of got into trouble once at the hospital when the staff told me I was going to have to be admitted for treatment and high powered IV antibiotics.  I told them I couldn’t afford it.  They said… “Oh, don’t worry about that!”  I replied… “Oh, really… are you going to pay my bill?”

It was very quiet in the room after that.  Funny… I didn’t get even one volunteer.

Okay… I’m sure I’ll be in trouble with a few folks on those last comments, but I can always take the heat when what I have said is the truth.

There was a lot more red tape when I showed up for the test and they have changed nearly everything from the last time I had a scan.  Not for the better.  Health care in the U.S. is utterly ridiculous.

So now… you’re all up to date until next week when I see the Oncologist and go over the report from the PET scan.  But of course, we all know by now that I will probably find a way to get a copy of the CD and the report before I see the Doc. 

There is one thing that I would like all of you to do in the meantime.

THINK:  CANCER FREE!

I think it is time for one of my PET scans to indicate… NOTHING THAT GLOWS.  I know that I will be dealing with whatever is going on in the right lung, but as most of you already know, I’m kind of used to dealing with that sort of thing and with a little luck… a few blessings… support from my family and those who follow this journal… there will always be a tremendous amount of “HOPE”…..

Thank you for always brightening my day…

Hope yours is most beautiful..

Miracle close

Miracle

Namasté

Michael33