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

A brief update

Good Morning…

Here’s a brief update with more to follow…

The PET scan was done on Thursday, April 18, 2019 and I picked up the disc and report on Friday.  I have reviewed the report but have not viewed the disc as yet, mainly because I’ve been too tired to deal with it and a couple of factors that an old man shouldn’t have to deal with on his own… but often… reality hits you between the eyes.  The report is very confusing.  I’ve learned a lot about reading these reports over the years and yet… this one has me just sitting here and wondering.  I will need to do a little research and then view the disc before I can fill you in on what I can figure out from amongst the confusion.  It almost seems as if the doc that read the scan just wrote the report as if only other docs will read it… okay… I know… that wasn’t funny.  I know that a doc orders the test and the doc that reads the scan prepares the report for the doc that orders it.  BUT PATIENTS SHOULD BE ABLE TO UNDERSTAND AT LEAST MOST OF IT THEMSELVES. 

So… here’s the deal… I’ll be doing many Google searches in an attempt to understand the report… review the disc… and fill you in on what I can determine to be fact… or maybe just confuse my readers along with myself.  Whatever the results… I will post something soon.

My appointment with the radiation oncologist is next week and hopefully… she will be able to un-confuse me.  Perhaps she might even tell me that my own analysis is full of shit.  After all… she already referred to me as a “bulldog” when it comes to finding out information.  I kind of think I fit the “bloodhound” type a little better.  I love their long sad faces and besides… their ears are more like mine.

bloodhound 1

photo credit: Michael J. Belgie Sr. IMG_0187spbh#5 via photopin (license)

In the meantime… have a most beautiful day.

Michael33

April 2019 update pre-scan

So here we go again.  This is the week of the PET scan.  What will be determined?  Do we start the process all over again?  Has it raised its ugly head for the fifth time?  Am I cured of cancer?  Has my lung regenerated itself?  Is the lower lobe still blocked off by the hilar tumor, keeping the fluid locked inside it?  Is the middle lobe still collapsed?  Do I still have pneumonia?  Is pleural effusion still running rampant between the linings of the lungs and the chest cavity?  Do I ask too many questions? 

Ummm….. NO!

I don’t believe a patient of any serious illness/disease can ask too many questions and if you have a doctor that doesn’t want to answer your questions… all of them… then find a new one.  My oncologist answers “all” my questions… even when she would rather not.  My VA doc tries his best to avoid my questions and attempts to change the subject by telling me I need to take the flu shot or to have a colonoscopy.  Hell will freeze over before I have one of those.  When he tells me that crap… I just say… Doc… I’ve had life threatening cancer in five different parts of my body… do you really think I’m going to voluntarily have a camera shoved up my @$$ just to see if something might be out of sorts up there?  That’s when he hides his eyes in the computer screen and starts asking me why I’m not refilling all my medications.  Then I have to inform him that I haven’t the means to pay the ridiculous amounts that the VA is charging me for them while hearing on the TV… how well the government takes care of its precious veterans.  He then realized… once again… that I can actually see through the bullshit of the Veterans Administration and governmental red tape.  He had the nerve to tell me on my last visit that I needed an MRI done on my spine.  I asked him if I had to travel to get that done and he said “yes”.  I told him I couldn’t travel, I was too ill to travel, and he dropped the subject.  What happened to the VA telling everyone in the world that our wonderful veterans could now “choose” to have treatment locally if they lived more than 40 miles from a treatment center?  What happened?  More lies and misconceptions from our dear and precious government of the United States of America.  Welcome to America.  We care about our veterans…..?

My cardiologist… (not VA associated) doesn’t want any conversation at all.  Doesn’t want to go into any detail of tests he runs that cost you a fortune… and certainly doesn’t want any questions beyond what he has to tell you on his own… which is very uninformative.  It’s like squeezing blood out of a turnip. 

Wow!  That was a real rant, wasn’t it?

Okay… I’m done.  PET scan this week.  Results from the doc next week, but we all know that I will find a way to retrieve the results before that appointment.  My laptop loves reviewing PET scan CD’s and on the last scan, the radiologist that read the scan actually gave me a copy of his analysis.  I think the same person is doing this scan so… I’m expecting to get the report before the doc does.  If he does… I hope to share it with you before I talk with the doc.  Could be very entertaining… hopefully on the positive side of things. 

Summary:  Still coughing myself to death.  Chest, side and back all hurt from either internal trouble or soreness from coughing so damned much.  Periods of weakness… fatigue… shortness of breath… fever now and then… some loss of appetite… otherwise… things are wonderful.

See you on the other side of the PET scan.

Miracle paint

Have a most beautiful spring day

Michael33