In Living Color, In Black and White

In Living Color

I suppose you could say that this has become a difficult day.  Not that there hasn’t been a large number of those days as of late, but this day has been one of the most difficult both mentally and physically.  This morning I drove across town to pick up the disc and report from the latest PET scan.  I sat in my car in the parking lot and read it.  Probably not the best idea, but sometimes… you just want to know.  I would imagine that these result, which by the way, are quite confusing, will not be pleasant for anyone who cares… to read.  I know it’s not pleasant for me to write.  I can read the reports and even view the colorful glowing pictures I have found of me on far too may PET scan discs over the past few years, but it seems that when I finally post the words into this journal… is where it starts to become real.

First of all, there is a lot in this report that I just plain don’t understand.  Some of it I have a reasonably good idea about… and some is all too clear.  My first reading of this report didn’t really soak in, I suppose.  After getting home and sitting down, going over each detail… I thought that perhaps I had unknowingly become an honorary member of the walking dead.  After mulling it over a while… perhaps that idea is not too far from reality.  Let me say this first.  I have not heard from the docs as of yet.  I should receive more than one opinion on this report from one past doc and from those who are or will soon be current.  The radiation oncologist that has quit doing radiation treatments is actually the one that ordered the test.  Theoretically… I should hear from her about the results.  Not sure when that will be or if it will just be a phone call or an appointment.  At this point… nothing is for sure.  The other opinion I should receive will be from my new oncologist in conjunction with a new radiation oncologist that I have yet to see… after they get together and discuss the best way to progress.  There are no appointments with the new radiation doc as yet and the next scheduled appointment with the new oncologist is not until late October.  So… who knows when or if I will hear anything from any of them.  It seems to me as though time might be a factor.  If I have the report… I am certain that all of the docs have received or are able to review it today.

So… now… I’ll just get to it and as usual… just tell you like it is… I’m not sure whether to give you all the findings and details or just the ‘Impression’, so I think I’ll just try to combine the two for a general summary without going into all the complicated details.

Chest findings:
Right pleural effusion.
Increased uptake in mass about the right hilum.
Right perihilar atelectasis (collapse).
Nodularity along the right lateral chest wall.
Nodule abutting the right pleural effusion, posterior to the right hilum.
Probable necrotic portion to the mass effect about the right hilum.
Additional nodules adjacent to the pleural surface on the right.
Additional nodules in the azygoesophageal recess in the right lower lobe.
Additional nodule along the pleural surface of the right lower lobe.
Pleural fluid with uptake of 6.2 SUV’s.
AND…… Pretracheal node with uptake.

Impression:
Large necrotic mass now seen in the right hilum consistent with cancer.
Multiple right-sided pulmonary nodules, consistent with progressive metastatic disease, with multiple pleural-based metastasis.
Right pleural effusion
Right perihilar atelectasis.

There it is… in living color… in black and white… the realities of human existence.  Where I go from here I’m not at all sure.  I suppose I am at the mercy of the universe… although… until I hear otherwise… I will have hope that my new docs have some encouraging words for me, whenever they get around to reading the report and informing me of their plan of attack… while I wait… and things continue to grow and multiply.

Tick…………………….. Tock……………….

At this point… I may have more confidence in the universe than in the medical profession, but I’m trying to keep an open mind…… Maybe.

I have much to say about some of the circumstances that have led up to this report.  Things that possibly could have or even worse… should have been done after the April PET scan results showed that the tumors from December were still present.

More to follow…

Thank you for your continued thoughts, prayers, hugs and healing light…

Hoping your day is most beautiful…

Michael33

So… What Is One To Do?

So what does one do

 

Wednesday, I visited with my new Oncology doc.  I must admit that I had multitudes of preconceived ideas about her and how the appointment would go.  As most of you already know, I don’t much like having to change doctors or going to a new one of any kind.  As I recount my thoughts and compare them to how the doctor dealt with my now extensive history of cancer, the numerous radiation treatments I have undergone, my current health situation… well… I must admit… I was wrong. 

Now, I know this was the first visit and things can change quickly when the docs start coming up with what they want to do.  But here is what she did Wednesday.  She went over my past cancers, without reading from a computer or from notes… she actually “knew” from studying my previous reports what I had been through already.  That in itself was a bit rare as far as my extensive relationships with doctors goes.  Most of my docs come into the treatment room, sit down at the computer and say nothing for several minutes while they look up to refresh their memory of what they themselves have done… and often, I even have to help them remember.

So, from her going over my history, she questioned several facts that seem to puzzle her greatly.  First, she wanted to know if I had seen an Oncologist other than my radiation oncologist who recently abandoned her patients.  I told her that I had not.  She looked puzzled.  Then she asked if I had seen a pulmonary doc during this process concerning all the lung difficulties that I have and are currently enduring.  I told her that I had not.  She looked puzzled again.  She said, “So the only doctor you’ve seen through all of this is your radiation oncologist and primary care physician?”  I told her… “Yes.”  She continued the puzzled look.

She said that she was a chemotherapy doctor and then went over my heart history, at least… semi agreeing with my thoughts and the thoughts of my ‘now retired’ cardiologist, that surgery and chemo should be last resorts. 

She is referring me to a new (and in her opinion an excellent) radiation oncologist.  She wants me to keep the PET scan appointment that was already scheduled for next week, even though it was set up by my previous radiation doc… oh… and did I mention that she is the one that  abandoned her patients? 

Then she told me that the new radiation doc, in correlation with her, would review the scan, my history, and everything all together and decide on what might be the best treatment for me.  She wasn’t certain that I could even receive any further radiation because of the excessive amounts that I‘ve already received  She added that hopefully, the radiation doc could determine how much damage has been done to my lungs, heart and various other parts that have gotten zapped far too much.  She also threw in the possibility of immunotherapy, something that I know absolutely nothing about, but as you all know… I’ll be reading about it very soon.  She said that they have gotten some really good results from that type of treatment and it is generally less harmful than chemo.  Well… I’m certainly for something less harmful.

She also determined from exam and symptoms (severe ear ache, headache, pain through one side of my face and down the right side of my neck) that I must have a rather severe sinus infection.  She prescribed an antibiotic.  Something that is often quite difficult to get the VA docs to do.  They don’t like drop in patients and they don’t like to prescribe without seeing you.  So… they need to do one or the other.  Thank you ‘new’ oncology doc… I needed that.  Since I have a nearly zero immune system remaining these days, it is nearly impossible for me to fight any illness without help of some kind.  My problem is that I tend to procrastinate and allow the infection to become severe and very painful before I seek assistance.  Shame on me.

As an overall result, I was quite pleased with the first meeting.  I’m hopeful once again.  It’s not going to be a fast process… wait a week for the scan… wait two weeks to see the radiation oncologist… wait another two weeks to see this doc for a second follow up visit.

On top of that… I am going to have to jump through a lot of hoops and make several phone calls to find out if this new insurance through the VA is even going to cover any of it.  The PET scans are quite expensive, even at the 20 per cent with Medicare… and I am now at the point where I must choose between paying for the recommended health care that I need, or being able to pay the water bill and eat at the same time… and in addition to that, property taxes are due in my state within the next 26 days, which went up nearly a hundred dollars this year due to a school tax increase so that they can build a new sports arena because the rich people here were embarrassed when other schools came here to play basketball.  I wonder why those same rich people didn’t volunteer to pay for the complex themselves so that lower income families didn’t get punished because some wealthier folks were embarrassed.  I suppose they need their own money to fill up their swimming pools and pay their maids. 

So……. what is one to do?  It would be so much easier to… well… let’s say… throw in the towel.  There was a man at one of the political rallies recently who said that he had a hundred thousand dollars in medical bills and there was no way he could pay them.  He said that he wanted to kill himself.  Now… I’m not geared in any way in that direction… but I certainly understand how he feels.  Welcome to health care in America, Michael…

I won’t go off on a tangent about health care, but as a cancer patient… as a heart patient… as an aging American… I am totally sick and tired of hearing every politician in this country tell us how they’re going to fix our health care problems and give us lower premiums and cut the cost of pharmaceuticals… they’ve been saying that same shit for decades and yet… they’ve done absolutely nothing except continue to allow the insurance companies, the pharmaceutical companies and their CEO’s to make billions of dollars in profits and to stick plenty of it in our politicians pockets.  Last year we even got a so called raise on social security… it was just a few dollars but even that helps in moments of medical crisis… but instead of being able to use those few dollars to our benefit… the government took nearly every penny of the so called raise and put it into their own pockets by raising the Medicare premium.  Thanks Uncle Shit… ummm… I mean… Uncle Sam.  If anyone in this country really thinks that any of these politicians are going to help the poor or lower income folks of this country… You must be delusional.  Okay… so I went off on a tangent.

I’m done… for now… but… to be continued.

So… PET scan next week… if insurance will cover it.  Appointment in a couple of weeks with new Radiation Oncologist to discuss the results… maybe… if that even goes through the right processes… and from there… well… who really knows?  In the meantime, I’ll be coughing rather profusely and continuing my search for a good deep breath of air.

Whew!

Wishing you all a most beautiful day.

Michael33

August 2019 uPdAtE

Bella

Bella really is a kitty…
She just “thinks” she’s a bunny.

I suppose it is time for an update.  There have been some changes in my health ( ⇓ ), my quality of life ( ⇓ ), and possibly… still to be determined… in the health care I am receiving… (⇑).  I know that the upward arrow will come as a shock to many of you as it has to me.  Of course, there is no guarantee, so with time… perhaps I will be able to confirm that a change for the better may be coming… However… it does have its potential problems.

Last time I saw my VA doc I gave him the reports I had from the PET scans in December 2018 and April 2019 indicating that the tumors were still around and sadly… still active along with three new nodules in the lower lining of the right lung… also currently active and growing.  The doc decided that he could refer me to my current radiation oncologist and the VA insurance would cover it.  I was totally shocked after all I had been through previously attempting to get them to do that very thing and receiving no help what so ever.  Now… thousands of dollars later… they decide to help….. maybe.

Of course, immediately following this wonderful news… my radiation oncologist quit.  So… there went that idea.  I called the VA doc to see if they could work me in sometime in the near future to explain the situation along with the fact that my symptoms were worsening.  I thought that… being my “primary care” physician that he might have some ideas about something that might ease the symptoms.  He didn’t want to see me… which I thought was strange, but perhaps not strange for the VA.   Perhaps my symptoms have surpassed his capabilities.  He did, however, refer me to see a local oncologist.  Sometimes, I feel like there are some docs that would just rather not get involved in my health care.  Can’t say I really blame them.  I’m… umm… un-normal.  I did not get to pick which doc I will see but did get to select the location.

I was then contacted by a very polite (seeming to be caring) VA representative of VA Community Care… who is now… supposedly… arranging appointments with an oncologist.  Well… let me clarify that… the VA doc referred me to the VA Community Care who then referred me to an insurance company.  Hmm… and they wonder why I’m suspicious of getting anything done.  I’ve been through the oncologist route before and wasn’t particularly happy with the results, but I will once again attempt to wander through their muck.

I know the first thing they’ll want to do is either surgery or chemo… and that will be a big NOPE from me.  I’m weak enough already and chemo would be critical in that respect… (radiation was bad enough as far as weakness goes)… and my cardiologist has long ago warned me about surgery with my heart in the condition it is in.  They will argue with me and attempt to persuade me into doing something foolish while my little inner voice keeps saying… “Don’t do it!”  If they hit me with the ‘it’s the only way you will survive this time’ statement… well… I might have to take some time and ponder for a while… but I’ve beat the odds so many times now… I’m kind of like the old athlete that says to himself… I know I should retire, but just one more winning season would be nice.

As yet, I have not heard from the appointment schedulers or know which doc I’ll be seeing, but I expect that all to happen within the coming week.  Although, they assured me that they would have an appointment scheduled for me within 8 to 14 days.  Seven of those days have already passed without a word.

The symptoms have not changed since my July 2019 update, so I won’t trouble you here with that information.

Thank you all for your thoughts, prayers and warm hugs…

A most beautiful day to you all…

Michael33

Where’s Alice

Where's Alice 1

Good morning…
This post is not an update…
Or perhaps it is…
It is not a poem…
Or perhaps it is…
It is merely an emotional expression
Of one who has made an adventurous attempt
To endure stage 4
Over…
And over
Again…

Where’s Alice?

Where’s Alice when I need her?
Down some rabbit hole
In search of the unusual
I would presume…
I need something unusual
Other than more discoveries
Of tumors…
Maybe I should partake in
Some of those mushrooms
The caterpillar sat upon…
But then…
I wouldn’t know which side
Of the mushroom I’d rather eat…
To be large…
Or to be small…
Although…
Getting small sounds rather good
In this moment…
So small that no one can see me…
But of course
If I was small
The kitties might mistake me
For a mouse
And….
Well…
I really don’t feel like being
Tossed about the house
And…
Well…
You know how that story would turn out…
Maybe I should just join the
Caterpillar in whatever he was smoking
In that hookah pipe…
And please…
Don’t even ask whether I’d take
The red pill or the blue pill
I’m NOT taking the red one…
A life of harsh knowledge and
Brutal truths of reality
I’ve already had plenty of
Without the red pill…
So…
I’d take the blue one
If I had one to take…
At this moment in time
I would much prefer
A blissful ignorance
Of the harsh realities of life…
To bask in illusion…
It’s sad to think that the choices
I face these days
Are not as simple
As choosing which side
Of the mushroom to eat
Or which color pill to take…
And yet…
Perhaps my choices really are
That simple…
Perhaps life itself is really that simple…
If we could just avoid
All the bunkum that always surrounds us
Life wouldn’t seem so complicated…
Perhaps…
In this moment of time…
In this moment of harsh realities…
The appetizing distraction of a rabbit hole
Would simply seem quite lovely!
But…
Where is Alice when I need her?

Wishing you all a most beautiful journey
In
Or out
Of the rabbit hole

Michael33

July 2019 Update

I suppose it is time, perhaps past time for an update.  There are times when I tend to even bore myself with some of these, I can only imagine how you must feel upon reading them.  But this journal must persevere if it is to ever be of some sort of usefulness to another.

As you already know, I have pledged to tell it like it is and the truth is this:  Over the past several months since the last radiation treatment… I have suffered.  Now… I know that every individual in the world probably has their very own definition of suffering and no… I’m not being persecuted, starving… or living in a war zone, so yes… I completely understand that there are those who have suffered far greater and in many more ways than I could even imagine.  But… health wise… I have indeed suffered.

Serious illness seems to never have any positive value whatsoever.  Now, it is true that you may meet some kind and gentle people along the journey, those who are wandering their own yet similar pathways… and those who offer their caring hands and knowledge in their attempt to make your journey just a bit more tolerable.  Beyond that… serious illness just plain sucks.

On Tuesday of last week, I journeyed across the still swollen river to receive a Cat Scan of the chest area… (in place of a PET Scan because Medicare wouldn’t cover another PET Scan this soon after the last one).  It all went well except for having to hold my arms over my head for an extended period of time.  I’m not very good at that anymore… my arms go numb and it causes my heart to have more skipped beats and arrhythmias than its usual 10 or so per minute, which in turn causes a serious shortness of breath.  Otherwise… it was okay.

The very next day I received a letter in the mail from my radiation oncologist that I have respected and trusted with my life for the past six years with metastatic cancer in six different locations of my body… all of them serious with horrible expectations from the medical professionals and cancer organizations.  I have respected and trusted her because after six years… I am still in this world when the first tumor I encountered (lymph of the neck and tongue with an unknown primary) had a prognosis of 12 months.  The remaining metastatic tumors have been even more serious with survival percentages ranging from 5 to 15 percent.  Having a heart and immune system too weak to endure chemotherapy or surgery, it only served to decrease those percentages.  So… you can understand my trust in her.  However…………. the letter I received did tilt the pedestal that I had her on for a very long time.  In brief… this is what it said:

“I am writing to bring you up to date on the current and ongoing plan for my medical practice…..

As of July1, 2019 the Radiation Oncology part of my practice will be closing.  I have elected to take a position which will allow me more time off.  The last 30 years have been rewarding but challenging.
…for your medical care please follow up,, as usual, with your primary care physician, retaining medical and surgical oncologists if problems should arise…”

Wait………………….. What?……………………

Receiving this letter on June 26th was quite disturbing… this was on a Wednesday… That gave me just Thursday and Friday to find out how to get records… what other oncologists would she recommend… what do I do now?  The day before this letter I had a CT scan that was scheduled “by her”.  I had an appointment with her the next day to discuss the results of the scan and what I thought would be a discussion of “how to proceed from this point as far as treatment”… radiation… if necessary.  Let’s say… my attitude about that visit was quite negative at that moment.  I wanted to wait in the treatment room until she came in and then say… Really?………… Two days notice?…………… Is that really fair to your patients… especially those who are currently in need of treatment with tests already in process?  Really?……………..  Then I thought I would spring from my chair and choke her.  (just kidding….. sort of)… I did behave myself, although… I was quite disturbed.  She came in the room and asked how I was….. After a few very uneasy seconds of silence… I responded by saying… “Lost!..  I feel lost.”  Then she had the audacity to ask me “Why?”  I said… “There’s a rumor that I’m losing my doctor.?  She said… “Oh”.  She then awkwardly sat down on the roll around stool and opened my file to discuss the CT scan results.

Here they are in all their blooming colors with hues of crap…

First… the good news…………………….. Oh… wait… there was no actual good news this time.  The good news column of the report seems to be rather… well… empty.

So… the rest of the report…

Mediastinal adenopathy… Oh… sure… they had to start the report off with something I had to look up.  Mediastinal is the part of the chest that lies between the sternum and the spinal column, and between the lungs.  This area contains the heart, large blood vessels, windpipe (trachea), thymus gland, esophagus and connective tissue.  Adenopathy (lymphadenopathy) is disease of the lymph nodes in which they are abnormal in size.  Whew… too much knowledge for an old man.

Now… to continue… The right hilar mass and post-obstructive changes are similar to the previous PET scan.  There is right pleural effusion with strandy densities in the posterior right lower lung with air bronchograms.
Bronchograms… refers to the phenomenon of air-filled bronchi being made visible by the opacification of surrounding alveoli.  It is almost always caused by a pathologic airspace/alveolar process in which something other than air fills the alveoli… usually blood or fluids from infection.
Pleural effusion… the build-up of excess fluid between the layers of the pleura outside the lungs.
I’ve had a bit of difficulty in defining strand densities… however… it appears to be associated with collapse or consolidation of an area of the lung.

Now… to continue… The actual mass is somewhat difficult to delineate, although I suspect it measures at least 4.5 cm medial to lateral.  It does abut the right side of the left atrium. ((this particular finding is new and certainly concerns me greatly… considering the current condition of my heart.))  Progressive, irregular nodules in the medial right lower lung are seen measuring 1.4cm, another 1.5cm long axis… and another about 7mm.
Calcified granuloma in the posteromedial left lower lung.  Calcified granuloma in the spleen.

Now… you must be in complete understanding of this entire report… just as I am…… NOT!

In summary:

Right hilar mass… ill defined with post-obstructive changes extending posteriorly and laterally from the mass and the right hilum.
Right pleural effusion.
Medial right lung base nodules somewhat progressed from the previous exam.
Evidence of granulomatous disease.  ((just for the record and a better understanding of this journal in general… Granulomatous disease is an inherited (genetic) immune system disorder that occurs when a type of white blood cell (phagocyte) that usually helps your body fight infections doesn’t work properly.  As a result, the phagocytes can’t protect your body from bacterial and fungal infections.  People with chronic granulomatous disease often may develop pneumonia, lung infections, skin infections, lymph node infections, liver infections, gastrointestinal inflammation or other infections.  They may develop clusters of white blood cells (masses) in infected areas… granulomas.

I found that to be most interesting considering my age and the fact that not one single doctor I have seen throughout my lifetime has ever even mentioned this… although my white blood cell counts are often… well… weird.  Hmmm….

So… here’s my interpretation of the whole damned thing…

The tumors are still there in the hilum and subcarina… now pushing against the left atrium… fluid surrounding the right lung… tumors in the lower lining have increased in size just a bit.  Fluid in the partially collapsed lower lobe that can’t escape… collapsed middle lobe partially surrounding the hilar tumor making the determination of an accurate size rather difficult.

Currently… and apart from all other symptoms past and present… I am experiencing severe bouts of lightheadedness, dizziness and extreme weakness particularly in the legs.  When these bouts hit, I often experience my vision closing in from the peripheral to sometimes… nearly complete loss of vision.  During these occurrences… the closing in is accompanied by various colors with the predominant color being a pale green but may contain a number of different colors.  I know that sounds weird and I’m not at all sure that this description really tells it accurately, but you get the idea.  It happens when I cough real hard, which is often these days.  It happens when I lean over or when I rise from squatting down to pick something up or to do my daily kitty chores.  It’s not pleasant and it does concern me a bit.  This has been occurring far too frequently over the past three days particularly in the morning hours.  I have no idea what the actual cause may be because there are too many possibilities.  Perhaps it is low blood pressure, but that would be really weird considering my BP history.

Here’s the thing…
It appears that I am a bit ill… but determined and filled with hope.  I haven’t survived this long by giving up… and with your support… caring… well wishes… and hugs… my vision of hope will carry me and those who care about me… through to better days.

Most of you know someone having to deal with cancer… maybe a friend, just an acquaintance or someone very close to you… please… give them a hug and let them know that you care and that you are there for them.  Call them and ask how they are doing… even if they are like me and don’t want to really talk about it… it will still mean something special to them that you care enough to ask and have the courage to do so.  That is some of the very best medicine you can give to them… and always remember… laughter is so very healing… no matter the circumstances.

Hug Someone

Wishing you all wellness, happiness… and a vision of hope.

Michael33

Follow up with Doc – April 2019

Hmmm…

Well… the appointment with the doc went nothing like I expected.  I guess I’m a bit stunned… or disillusioned… disgusted… frustrated… perhaps “discouraged” – would best describe how I really feel.

Although… after receiving radiation treatments… both tumors from December are still present in approximately the same size they were then… with hypermetabolic activity (although the SUV has decreased)… there are three “new” hypermetabolic active nodules in the lower lining of the lung that have developed recently… one of the larger remaining tumors (the hilum area) still blocking airflow to the middle lobe, which is still collapsed, most likely in its entirety… still blocking off the lower lobe making it impossible for the fluid captured there to escape… and according to the doc… it seems there is “nothing that can be done at this time.”

Wait……………… What?……………..

Doc’s explanation was that I’ve received too much radiation in that same area and further radiation without more healing time could cause too much damage to the good parts… I suppose she is most concerned about the heart… or causing further collapse of the lung… or…

Hmmm…

Maybe I’m looking at this with a slanted point of view, but how does one determine if possible damage from more radiation would be worse than what the tumors are going to do… like grow and metastasize to other areas… block off air flow completely to the entire lung… cause the lung to completely fill with fluid?  I can think of a thousand more things that could happen if “nothing that can be done at this time” is the final answer.

The doc said to call her if my symptoms worsened.  I told her I was coughing till I gag (sorry about that description)… coughed so hard at times I couldn’t stand… coughed myself into compete fatigue of the entire body… extreme lightheadedness… dizzy… sometimes nearly passing out… and yet… “call me if the symptoms worsen.”

I know that there will be those who advise me to seek a second opinion and that is something that I would like to consider and probably should do… but… those who suggest that, haven’t seen my current stack of medical bills.  I’ve been wrestling cancer since the summer of 2013 when I was given a twenty percent chance of survival.  The next session with metastatic cancer into the lung was a five percent chance and this last round the percentage of survival virtually disappeared altogether… and yet… here I am… beating the odds but not surviving the financial burdens of all the appointments, tests and treatments. 

I suppose this isn’t the best time for me to go into a rant about the cost of health care in the United States, but I will say that it is utterly ridiculous.  Now… they are proposing Medicare for all which may be a good thing for those who are relatively healthy… but for those of us who suffer from debilitating diseases… that remaining 20% of the cost is deadly.  Some tests I must have are almost $7000… 20% of that takes a very big bite out of one’s social security check.  When each treatment that you must have done to even hope for survival costs more than $1595 a day for several weeks… well… it doesn’t take a CPA to tell you that all you had saved is gone and your social security isn’t going to pay the bills.  When you consider the fact that I’ve received more than 100 of those treatments… it’s fairly easy to figure that out. 

One more thing that must be said here… every time I have turned to a nonprofit in search of some assistance… any kind of assistance… all I ever get back in return are emails asking me for donations…….  Really?  And I’ve already talked about how much assistance the wonderful Veteran’s Administration has to offer.

So… where does one draw the line… choosing whether or not to continue going deeper and deeper in debt in a continuous battle with metastatic cancer?  Like the doc stated some time ago… “this is just the way it’s going to be.” 

Sad cat 3

I know… this is a bit of a downer post for a site with the word “Hope” in the title… but this is ‘my’ journal about the trials and tribulations of an attempt to survive metastatic cancer.  There is no loss of “Hope”.  I’m just as hopeful as I’ve always been from the beginning of this journey… I’m just extremely discouraged in this moment.  I’m still going to rise at 5a.m. to feed the kitties and to enjoy my morning coffee.  I’m still going to share a smile with those whom I may encounter throughout the day… I’m still going to enjoy a gentle morning rain… the hues of dawn… the setting sun… and every bud that blooms within my view.  I’m still going to enjoy writing poetry… writing in this journal… and reading every comment that others have to offer.

I’m ‘hope’-full that I discover a better frame of mind soon and do some additional writing in this journal that doesn’t cast such a dim light… Until then… may your days be most beautiful, healthy and happy.

Michael33 

The Report, April 2019

P1070670

So here’s what I have concluded from studying the report, reviewing the CD of the PET scan and numerous Google explorations in search of reasonable explanations of what I did not understand in the report.  My conclusion is:  I still don’t understand.

Here’s what I do know:

The tumors that were discovered in December of 2018, for which I received twenty something radiation treatments… are still there in approximately the same sizes that they were then.  Not a good thing.  One bit of information that is good however, is that the SUV has decreased somewhat to 5.8 (compared to SUV of 17 previously).

If I compare the picture from today with the one posted in “The Report” of December 15, 2018, I don’t see much difference… sadly.

There is still pleural effusion.  (That is fluid that has accumulated between the layers of tissue that line the lungs and the chest wall… I’m beginning to think that it is permanent)

There are new nodular areas with hypermetabolic activity in the right posterior gutter.  (I didn’t realize that I had gutters inside my body.  Perhaps if I’d known… I would have done some gutter  cleaning before they got plugged up with bird nests… or whatever).

I am assuming, which often gets me into trouble, that this means the pleura lining at the bottom of the lung.  Still not sure.

The report then states:  “These may represent distal pulmonary nodules or pleural-based nodules.  These measure about a centimeter in size.  Three discrete areas noted.  Each of these have an SUV of between 3 and 4.

The next part I also did not understand.  It states: “Physiologic activity within the genitourinary and gastrointestinal tracts.”  (Huh?)  I can’t seem to nail down a good explanation for this either and don’t know if that is good or bad.

Diverticulosis with some pelvic fluid.  I understand diverticulosis but don’t know about pelvic fluid.

So… there it is in black and white with a considerable amount of hues of $#!+ mixed in.

The doc appointment is later this week.  Wish me luck in getting a good explanation of it all.

Till then… I’ll be wishing all of you a most beautiful day.

Michael33