Brain Fog or Overload?

Yes… I know.  Don’t Google your illness. Too late…  In my defense… I have done my very best to separate the fiction from the facts and have only studied the information from very reputable sites.  I know… I could have it all wrong… or it could be like my reading of the scan results… partly right and partly wrong.  

I must confess… this latest diagnosis is kicking me in the mental butt.  I don’t know if that means that I have my head up my ass or what… but I am indeed having a difficult time getting my thoughts straight.  For those of you who would rather not read this… that is perfectly alright… after all… it is just a journal… a documentation of personal events… and this entry into this journal will most likely… not lift your spirits.  I have chosen to include along with all the details of tests and procedures, the mental turmoil that may accompany this illness and I know that there are those that don’t want to know.  I should have become one of those before I investigated all the information I could find… but as most of you already know… I’m a curious soul.  I’m not going to let someone else decide my fate without obtaining as much knowledge as I possibly can.   

Here’s a few of the details that I left out of the last post.  The size of the tumor in the hilar lymph node area is 29mm.  When I think of millimeters, I tend to think that whatever has measurements in millimeters must be relatively small.  In this case… it seems to not be the case.  The normal size for the lymph nodes in the hilum is 1 centimeter… (10 millimeters for those of you who still dwell in the antiquated imperial system like me.) 

The tumor that has taken up residency in the lymph node of the right hilum of the lung is almost three times the size of the normal lymph node.  What I can say about this is that any other part of me that has swollen to three times its normal size… hurts like hell.  I suppose that would explain a lot of the pain I experience in the right chest and mid chest areas.  At that size, it must also be putting a great deal of pressure on the pulmonary artery and veins, the bronchial arteries and all that garbage that pass through the hilum.  Along with the fact that the lower and middle portion of that same lung has collapsed… I suppose I needn’t wonder why I’m so short of breath. 

The tumor in the subcarinal area is about the same size.  That tumor is located directly below where the windpipe splits to feed the lungs.  The diseased node is on the right bronchus immediately after the split.

Further diagnosing of myself with my medically uneducated mind… I have unofficially determined that I fall into the T4 N2 M0 or maybe M1 (I’m not sure) category… which places me kind of in between stage 3B and stage 4.  The prognosis for patients with cancer in the Hilum and Subcarinal areas… that has metastasized from other areas… (Lungs)… shows a survival rate of 5 to 8 percent…………………………… Well………. Shit!!!!!!!!!!!!  What else can I say?

Radiotherapy to these areas is quite dangerous, as you would think.  I don’t need to read a lot of information to know that.  They are very near the heart which I already have a great deal of trouble with.  When the hilum gets radiated, so does all the vessels, nerves and airways that pass through it.  I’ve already been warned by my radiation oncologist of what might happen to the esophagus with radiation to the subcarinal area… and how does one radiate a lymph node (subcarinal) that lays against the windpipe, without radiating the windpipe?  It’s not pretty. 

Most studies that I have found involve surgery, chemotherapy and then radiation.  I’m too high a risk for surgery or chemo.  There are very few that speak only of radiation therapy without the other two procedures.  Of course, as we already know from past experience… I’m normally in the “un-normal” categories, if I fit into any category at all.

So… someone please tell me what to do, because I am at a loss… a complete loss.  It seems that I am searching for hope on my own Vision of Hope33 site.  Whatever that means… I’m not sure.  It seems I’m not really sure of anything in this moment.  Who am I anyway? 

Oh, yeah… I remember…

Michael33… the one who’s been beating the odds for twenty years.

Change of subject matter:

These little creatures seem to not have a care in the world.  Of course… they don’t Google.  They do live a bit dangerously though… having a pool party in the kitties water bowl may not be the smartest thing to do… but they sure look like they’re having a lot of fun… and they even invited me.

Pool Party 1

Namasté

The Report… August 2017

I’d like to say that I am at a loss for words… but we all know that never really happens with me.  My mind is running in so many directions in this moment that I can’t get it to settle down enough to actually think.  As it turns out… my uneducated tomography analysis was somewhat correct and somewhat incorrect. 

Having reviewed the disc prior to my appointment, I felt as though I was about to receive information that I didn’t really want to hear.  So when the doctor came into the treatment room, opened up my chart… looked up at me with that very serious (I hate telling patients this kind of news) face… I covered my ears with my hands.  Yes… I know… a childish maneuver for an old man… but it did bring a smile to the serious face of the doc. 

So… here’s the good the bad and the ugly… except I haven’t found a lot of good anywhere in it as of yet.  Actually… most of it is just ugly.

Impression:  PET CT scan

  1. Findings in the chest consistent with lymph node metastatic disease to the right hilum and subcarinal region with abnormal lymph nodes with INTENSE FDG activity.
  2. Atelectasis right middle lobe and lower lobe.

I guess you could say that my poor right lung and areas near to it are having a fairly bad day.

The explanation…

I think most of you who read this journal already understand the meaning of metastatic so I won’t explain that one.

The hilum… to explain it simply is the point where the blood vessels and nerves enter the lung.  It is the point of entry and exit of the lung for structures like the pulmonary arteries and veins, the primary bronchi and bronchial arteries and the pulmonary nerve plexus and the lymphatics.  Obviously… it is a very important structure and not particularly a good candidate for radiation therapy without some… perhaps very serious side effects.

The subcarinal region is an area just below the trachea where the bronchi split off to each lung.  The doc said that surgery was not an option for that area… but then, surgery is not an option for me any way due to the severity of my heart disease.

Atelectasis I have discussed previously… Collapse of the lung or a part of the lung, usually caused by bronchial obstruction

So……………. what now?  I’m pondering my options which seem to be relatively easy to determine… another series of radiation with perhaps more severe side effects than the ones I am still suffering from due to radiation on the lung and neck… two and three years ago respectively.  Or……… do nothing.

The copays on this crap are utterly ridiculous.  Thousands and thousands for the therapy alone… hundreds for the PET scans… hundreds for the CT’s to align everything up for the zapper machine… then you get bills from docs you’ve never heard of that analyzed the data from all those scans.  You lose 30 pounds… okay… I admit… I could maybe go for losing 10 or 15 of those pounds, but not 30.  It makes you weak… nauseated… burns your skin and everything inside of you that the radiation passes through to get to the tumors… then your esophagus swells up till you can’t swallow food… and to experience a severely burned windpipe and esophagus… Well… I don’t really think I’m up for all of that in this moment.  Of course, in addition to this… the extreme probablility that in twelve to fifteen months it will once again be lurking in some new unsuspecting location… Well… you can feel my dilemma.      

So……. what do I do?  I procrastinated on the CT to mark those beautiful black crosses all over my body so that they can align the zapper.  You wear them like tattoos for several months before they finally wear off.  They indicated that they would like to do the scan earlier, but I opted for late next week… to give myself a little time to calm my mind a bit… to attempt to rationalize the one most important question in all of this… What is life?

For the moment… I will just ponder… perhaps a bit of procrastination… sit at this antediluvian kitchen table… pretend that I am invisible… and peek out the blinds…

Shirt peeker 2

And watch the kitties…

Petals 1

Thanks for dropping by.

Namasté

Michael33

To Post or not to Post

To Post or Not to Post

To Post or not to Post

I’ve been debating whether or not to post something today since I have no official report available to me. I picked up the scan disk this morning. I put it aside for a while, wondering if I should even view it myself. My curiosity got the best of me and I stuck it into the computer. I looked at the full body scan view first because that is what pops up first. I couldn’t tell a lot about it except I did note a couple places of dark areas that I did not understand. I began viewing the cross sectioned views starting at the top of the head and going completely through the body to the mid-thigh area. Here’s what I saw…

A small area of glowing in the mid-section of the brain. I assumed that this was simply magnifying the tiny area remaining of my intelligence. There was some unusual coloration in the sinus area, but I have had some major problems with them as of late. Nothing else seemed to be of significance until I came to the lung area. That’s where I observed two rather large areas in the right lung… one lying against the inside wall of the lung and the other… an even larger area… a bit farther down in the lung… both of them glowing like quasars. They are both considerably larger areas than the previous area of cancer found at the bottom of the right lung in late 2015. There was also some unusual coloration in the lower torso areas, but I’m unsure what specific areas are affected or even if it is significant to note.

Of course my un-knowledgeable mind may see things that mean something totally different from what I think they might be. I’m hopeful that is the case. I suppose I won’t find out until Thursday unless my doc gets the report and calls me early. I’m thinking that no phone call is probably the best news…. maybe.

To be honest to you and to myself… I’m not sure I’m up for more radiation… even if that is an option. I believe I stated in a previous post… (In a Sealed Envelope)… on one of my ‘not so good’ days… that it seems that you go through therapy and get a bit better, but then… 12 to 18 months later… “It’s back”… in a different location and more serious. You must admit… that would get old.

My best Michael33 philosophical response is this… I will pretend for the moment that my uneducated Positron Emission Tomography mind may have misinterpreted the results and go about my daily routine as usual. Until Thursday…

It’s Tuesday… my favorite day…
Celebrate it as an opportunity to feel the beauty within you.

Hoping your day is filled with many beautiful moments…

Namasté

Michael33

Waiting

Well, the PET scan went pretty much as expected.  Russ, the scan tech was very friendly, conversed with me about his life and how he came to do what he does, his military service and why he signed up, his education… etc.  He was just very personable and I so appreciate that type of personal interaction when having to undergo such tests with the potential for unpleasant results.  He helped to ease my mind greatly.   I enjoyed the conversation.  We are about the same age, he being about three years younger than I.  We seemed to have many things in common.  He had no trouble finding an appropriate vein to start the IV… painlessly I might add… and inject the radioactive isotope. 

I then sat in a recliner with a warmed blanket over me with instructions to be very still for the next 45 minutes to an hour… in a very small room… alone with my thoughts.  They wandered greatly.  I tried to write poetry in my mind but all I could write was satirical comedy.

When he strapped me in the cocoon as I call it and inserted me into the machine, I noticed a great deal of heat emanating from it.  That was not normal as I had never felt that heat from it during previous tests.  I didn’t bring it to his attention because most of those machines know when they are overheating and either sound an alarm or shut themselves down.  I did think about it catching on fire and the fact that my arms were bundled in the cocoon next to my body and there was no way that I could escape from that bundle unless I were to suddenly become a butterfly and fly out of my cocoon.

Having had several of these tests and being as observant as I possibly can in that situation, I noticed that Russ paused the machine in several places for a longer duration than others.  Of course I wondered why that might be but presumed that he was observing some area that needed a longer look. 

I asked Russ if he could make me a copy of the CD with the pics of the test and he said that he would and that he would leave it at the desk for me to pick up on Monday.  I will be there to bring it home, place it into this very laptop and view the pics for myself.  I will know some things after that journey through the cross sectioned tomography of my innards… (I just love that word… I should write a poem about it)… and I will be very confused about some others.  But it will provide me some interesting data to study until the appointment with my oncology doc.  She’s very good at answering all my questions but I’m not real sure how she feels about me wandering through the info myself before she talks with me about the report.  So far… she has been an advocate of my curiosity.

So, for today… I wait.  Tomorrow I will exam the CD and throw my mind into complete confusion more than likely. 

I developed a painful sinus infection Friday afternoon not long after the scan.  I don’t see how it could be related to the test or to the injection of nuclear material… so I suppose it is merely a strange coincidence, but who really knows for sure.   Hopefully I can fight it off on my own.  I’ve taken far too many antibiotics over the past year, supposedly fighting pneumonia, so I am not going to go to a clinic where they will only prescribe more antibiotics.  With a compromised immune system, it is very difficult to fight off any infection, but I will try it on my own for now.  I’m taking Zinc to help boost what there is of my immune system… so of course… I’m hopeful.

So for the rest of today, we’ll be getting comfy in our chairs, taking life easy and just enjoying the evening.  Thanks for dropping by and have a wonderful Sunday evening.

Miracle chair

…and please don’t disturb Miracle while he’s watching Animal Planet…

Namasté

Michael33

Ponderings of a Cliff Dweller

Ponderings of a cliff dweller 3

Ponderings of a Cliff Dweller

One may ask of himself… what is it like to live… teetering on the edge of life…  not knowing if tomorrow will bring the dawn into his vision… or if he will find himself in morning’s light of another world.  I have pondered that very thought, as I would guess that many who are lingering in serious illnesses… given prognosis of a few weeks… a few months to live… have also had pass through their mind.  What is it that gives us the strength to rise in the morning and make the coffee… feed the cat… open the front door just to inhale the aroma of the blush of a new dawn?  How can we not just lie in the bed and wallow in our sorrow of a limited future that another has cast upon us… the thought that we may no longer be of this world… tomorrow?

I’ve known those that have given up… some of them very personally.  Those that say the battle is just not worth it.  Those who have allowed the physical weakness to take over their every thought of hope… confirmed by some very educated medical professionals that have advised them that statistics say… they will no longer be sitting in their favorite chair watching the morning news… sipping their favorite cup of coffee… by Tuesday.

I’ve known those that have lost their will to live.  Those who have used the very medications given to them to ease their pain… to take their own life… before the disease of which they suffer does that for them.  They are tired of suffering.  They are tired of the pain.  They are tired of the day after day treatments that often cause unfathomable suffering.  They are tired of being mistreated by those who profess to be their caretakers.  They are just tired of living.

Perhaps I am the one of un-normal-ness.  The one who so desires to live… if only to shine his light upon just one more human being that has lingered in the darkness for far too long.  My candle remains bright… even if there are those who cannot see it, for I know in my heart… there is still one… one who has been cast into the darkest of tunnels… that will someday… find my light reaching out for her… lighting the pathway into hope… into the love… of being human.

I have teetered on the edge now for many years.  Sometimes I stumble, feeling the earth shift beneath my feet.  I can see the cascading rocks sliding down the cliff… where I often lose my footing.  On at least four occasions… It has been presumed by those of educated minds… that I would not be of this earth within a rather short period of time.  Yet… here I am… blathering my soul into a journal that few will read… that even fewer will understand completely… though it will perhaps… bring a greater understanding to one who may wander in these words in some future point in time.

I can’t sit here and tell you that I have never been discouraged.  I am discouraged every single day of the week.  I cannot do all of the things that I wish that I could.  I cannot even do all of the things that I ‘need’ to do.  That is perhaps the most discouraging.  There is no little fairy that will appear voluntarily to offer assistance to me in any form or fashion.  I hurt. I’m short of breath.  I can’t take a deep breath, talk for very long… or laugh… without coughing.  I am extremely fatigued more often than not.  Those things are also a bit discouraging at times.  If I must confess the truth within this journal… I could say that I do have family… most of whom have distanced themselves from me for reasons unknown to me.  Maybe that is just their way of dealing with such serious illness of someone they care about.  Maybe their lives are just too full to deal with anyone else’s… and I can understand that… sometimes.

I would add this… When my mother became very ill with heart disease, we became closer… even though we had always been close.  When my father became ill… we became closer… even though there had been considerable distance between us for most of my life.  It was nice to once again become friends and to understand one another a bit better than we ever had before.  Why family distances themselves from one another… without provocation…  perhaps is not for me to understand.

So why am I writing this into my journal documenting my journey through cancer?  Because these very emotions are what this journey is all about.  Yes… there are the tests and their results… there are the treatments and their benefits… and the often severe side effects of those treatments… there is the good, the bad, and the ugly of medical professionals that diagnose us… treat us… and make us feel as though we are just providing them with additional income… or making us feel as though they truly care.  I have been very fortunate in the care, the respect, the understanding and the kindness with which I have been treated by my radiology oncologist.  The rest of those involved will remain without comment at this time… but all of you know that at some point in time… I will unload on those who fail the test of respecting another human being, especially of one who is very ill… i.e. The Veteran’s Administration Health Care System.  There are so many veterans, much worse off than myself… who deserve much better.

I am awaiting the PET scan scheduled for Friday morning.  Then the horrendous wait until the results of that scan are revealed to me on the following Thursday.  As most of you know by now… I will attempt to obtain a copy of the CD that will be sent to my oncology doc… so that I may view the results before they are discussed with me by her.  Not that I will understand everything in it… but my vision is still good enough to see glowing objects that linger inside me.

So… for the moment… I will await the injection of nuclear material into my veins… followed by sitting alone in a very small room for approximately an hour… pondering what may come… pondering what lies beyond the cliff… the edge of my humanness… standing in the doorway between this world and that of the next… teetering… on the edge.  Of course… I have always loved the explorations of the unknown… with a curious mind… and if I was healthy… I’d just be dwelling on the edge of a different cliff.

I am so tremendously grateful to those of you who have taken this journey along with me… especially to those of you who also wander within the Vision of Poets site… bringing into my life… your light… your compassion… your hope… your healing energies… your hugs… your uniquely special ways of making me feel that I am not alone in this journey.  My most heartfelt gratitude to all of you.  I can only hope, that my sometimes flickering light has shined upon you as well… and brought to you at least a semblance of hope that you have so unselfishly and generously shared with me.

Thank you for reading my ponderings… and thank you for always sharing your light with me.

Bennie 1

Bennie in his favorite tree

Namasté

Michael33

August Preliminary Update

Well, let’s start with a preliminary update.  Chest pain had been worsening for a few weeks… mostly on the front right side of the chest, wrapping around to the side.  I wasn’t due a primary care routine visit with the VA until September and that visit would require that I travel some distance for the appointment.  I didn’t feel much like making that trip so I transferred to a different facility closer to me.  I won’t go into the red tape, lies, sarcasm and condescension by the VA staff where I was transferring from at this time, but I feel that I really should discuss it at some later date.  There is no exaggeration in that last sentence.  It’s ridiculous how they treat veterans that simply want to be treated properly and fairly.

The new doctor seemed quite thorough and ordered blood work and chest x-rays.  The result of the x-rays read this way:

Impression:
Focal opacities right middle and right lower lobe. These more
likely represent atelectatic change, close interval followup
recommended to reassess

Yeah… I know… I had to look it up too…

Atelectatic:

Collapse of the lung or a part of the lung, usually caused by bronchial obstruction

The absence of gas from all or a part of the lungs, due to failure of expansion or resorption of gas from the alveoli.

Which basically means that more of the lung has collapsed or is obstructed by…. well… something.  What that something is will have to be determined by further testing.

So, the doc recommended a CT.  There again I would need to travel to have this done by the VA.  I am not able to travel at this time, so I will have to find other means to have this done.  Although the VA claims on their TV commercials… patting themselves on the back for a job well done… that veterans now have a choice to have medical treatment by outside the VA sources…  I will tell you now in big bold letters that I know positively… from experience… that what they say is just plain BULL SHIT!  They even sent me a “Choice” card to carry with me.  I have attempted to utilize that “Choice” on several occasions, only to be told that I don’t qualify or some other excuse of why I really have “no choice”… but with no explanation as to why.  Welcome to the VA medical mis-treatment centers.

I called my cancer doc and she was most helpful and willing to set up a follow up procedure.  She has been wonderful through all of this.  The problem is that she wants to do a PET scan instead of a CT, because she said that the results of the x-ray can be an indication of other factors.  (other factors?)  The PET copay is about double that of a CT.  Ouch… Welcome to the American Health Care System… If you were to call them on the phone… this is probably the recorded message you would receive… Your call is important to us… we will be with you in approximately 22 hours and 14 minutes… Please hold while we gouge you severely because your government allows us to do so… that’s why we give your politicians millions of dollars every year so that we can make even more millions in profit by screwing our patients.

The earliest they could get an appointment for the scan is two weeks away.  Until then… I wait and wonder… hurt… cough myself nearly to death… and breathe with great difficulty.  That’s okay though… I’m still here to write in this journal… as long as I don’t talk very long or laugh.  There are multiple possibilities of results.  Even the best of those possibilities is not particularly good, but there are some much better than the others… so you know which one I’ll be expecting… the best one.

The lab results were mostly okay.  Extremely low magnesium and vitamin D… although I’m already taking 50,000 units of vitamin D a week… now I’m supposed to take 100,000 a week.  I’m not sure I like that idea a whole lot, but I will try it for a while.  Also now taking magnesium.

It will probably seem like a long two weeks for me… waiting for the scan and then another week waiting on the results.  Hmmm… what circumstances could possibly change in three weeks time?

Now, its Kitty Time:

Jade… ready for his motorcycle ride… but he needs an extra large sidecar…

Jade 2

 

Is he adorable or what?

Mugs 1

 

Wishing you all a most beautiful day…

Namasté

Michael33