Biopsy uPdAtE

Biopsy and Pulmonary doc update…

Last week was quite interesting.  I saw the pulmonary doc and got extremely good explanations of the history of my cancer and what was causing what.  All of which she showed me on the computer in living color.  First of all, I learned why my symptoms were worsening.  The tumor in the hilum is pressing against the bronchial tubes causing me to cough more and large amounts of fluid buildup in the pleura between the lung and the lining of the chest, even though she had attempted to drain as much fluid as possible when she did the first… unsuccessful biopsy.  There is evidently a great amount of fluid still lingering.

Since the first biopsy failed to indicate the type of cancer… just as I suspected would be the results… I am now supposed to be going to have a second biopsy, one more involved than the first and with a larger needle… with another attempt to drain more fluid from the pleural areas… along with a greater chance for the lung to collapse.  I’m not looking forward to it at all, mostly because of my heart.  With coronary artery disease, high grade native vessel disease, numerous arrhythmias, an occasional A-Fib, and an electrical impulse that has relocated itself to the lower center of my heart where, upon occasion… fires in the wrong direction… causing the chambers to beat out of sync… I’m a bit concerned, knowing that a collapsed lung puts pressure on the heart and limits blood flow to it.  I hope that the doc that will be doing the procedure is just as concerned.  I have my doubts.  Actually… I doubt that he is even aware of the condition of my heart… or the fact that there are already two areas of partial collapse in that very lung.  Could be an interesting day.

I’m told by the oncologist that we ‘must’ find out what kind of cancer is there in order to know how to determine treatment.  I’m willing to bet that there’s a 99.9% chance that it is squamous cell carcinoma just like in the lymph nodes of the neck.  Is it all worth the risk?  I’m not at all sure… however… it is becoming more and more difficult to breathe.

So… once again… time will tell….

Tick……………………………Tock……………………………

Thank you all for your thoughts, your prayers, your hugs and your well wishes.  I’m putting them all to very good use.

Wishing you all a most beautiful day!

Michael33

 

Palliative care/Hospice… Wait… What?

Wait... What

(((Caution:  a naughty word lingers amongst the others… but remember… this is a journal and sometimes naughty words are definitely appropriate)))

I decided to keep my appointment with Palliative Care, although it was against my better judgement and especially since it was presented to me as if it was purely pain management.  What did I find when I got there?  Very friendly, kind, overly personable folks that dealt with me as if I was there to arrange a funeral.  I was not.  They wanted to prescribe opioids for pain.  I did not want them.  They had few alternatives, but ended up prescribing an anti-inflammatory… reluctantly.  They then sent the prescription to the wrong VA source that would have never filled the prescription and never notified me of the mistake.  I was asked about fifteen different questions about being depressed.  How many times does one have to tell another… I’m not fucking depressed… so please stop asking me before you cause me to become depressed. 

They wanted to talk about advanced directives and whether or not I wanted to be resuscitated, if I wanted chest compressions or not, and when I indicated that I might consider initial, short term chest compressions… they said with pronounced assurance…  that my bones would break in my chest from the force of the compressions, especially the sternum where it had been separated for heart surgery… and …”the crunching sound would be horrible.”  Really???  Horrible for who?  The person doing the compressions?  After all… if I needed chest compressions… I most likely would be unconscious and I seriously doubt that my hearing would be at its finest in that moment.  I think she was worried that she might have to be the one to do them.  So… if that’s the case… why ask in the first place.   

It was all just a wonderful experience.  As I said in a previous post… I feel as though I’ve become an honorary member of the walking dead.  Why can’t they treat patients as if they were going to improve… perhaps beat cancer altogether… and live another few years without pain?  Why not offer them “HOPE”?  Why is that so wrong?

After arriving at home, I reviewed the paper work they provided, including the medication… that’s when I discovered that they had Fax’d it to the wrong VA facility after I had carefully explained where to send it along with phone numbers with extensions, my VA primary care doctor’s name and the person that they should actually contact there that would take care of it.  The prescription also indicated that I would pick up the prescription at a facility in a completely different city.  Really?  Am I already seeing incompetence at Palliative Care?

The following day I had to go to the local VA for blood work.  That actually went remarkably well.  After that, I proceeded to the desk after being told that I needed to come in and see my team’s nurse to get my new medication straightened out.  Fifty minutes later, I finally got to see the nurse and explain the mix up on getting my new medication.  She assured me that she would straighten it out, have it sent ‘overnight’ and everything would be wonderful.  As of this date, that overnight delivery has taken eight days and I still haven’t received the meds.  The VA at its finest. 

I had a one day reprieve to take care of errands etc. before I went for the needle biopsy with a new pulmonary doc which was definitely a unique experience.  She deadened the skin and then inserted a rather large needle into the right side of my back between the ribs.  I will say… I found it to be quite a painful event.  Four large vials were filled with fluid that she drained from the pleura of the lung.  She continued to draw fluid from the same area after the vials were filled.  When she removed the needle and placed a large bandaid over the puncture, I asked how much fluid she withdrew.  I was totally surprised.  She held up a plastic bag and it contained somewhere between a third and a half of a gallon of bloody fluid.  She then said that I should be able to breathe a little better after a while. 

Since that time, my lung is making more noise than before, feeling as though it is popping or something 10 or 12 times with each deep breath.  My chest and side are sore in strange places, I’m actually not breathing any better and my cough has gotten considerably worse.  However… I am happy that there has been so much fluid removed from my lung lining.  The chest xray following the removal of fluid indicated ‘moderate pleural effusion’… so… there’s more there in different locations and the lower lobe has a significant amount as well… I wish that could all be removed.  I’m not real anxious to find out how expensive that fluid removal will be.

I have a follow up with the oncologist next week as well as with the pulmonary doc.  Supposedly, I will find out just what kind of cancer is lurking there.  My guess is that it is the same that was found in the lymph node of the neck several years ago… squamous cell… but I also have some concern that they may not find out anything from testing the fluid they removed, which means they will want to do something else to make that determination.  I do not.   

I have many questions for the oncologist at the next appointment, but one question will be a little different than the others… I will ask the oncologist this question (off the record)… and see if I get an answer: “What could have been done or “should” have been done last April after the PET scan indicated that the tumors were still present and active… that might have prevented the spread of the disease?  It’s going on seven months since that time and still… nothing has been done to slow the progress of the disease except hurry up and wait for this test and that test that  so far… has offered no new conclusive results.   

Time will tell…

Tick…………………………… Tock……………………………

Hug someone you care about…

Wishing you all a most beautiful day!

Michael33

 

nEw dOc uPdAtE

I suppose I’m virtually lost.  Wednesday’s doctor’s visit was perhaps the most devastating that I have encountered.  First… let me say that my new doctor seems to be the perfect caring soul that I have needed.  I do however, reserve the right to change my mind.  She was extremely knowledgeable concerning my PET scan of three weeks ago.  I had suspected that, like most docs I have encountered in recent years, didn’t have a clue about what was going on until ten minutes before they came into the exam room, checking results of tests just before they see you and in some cases, after they enter the room and log on to their computers.  She evidently had been studying all of it for some time.  She knew exactly where the largest tumor was and where the many new ones were loitering.

I didn’t like what she had to say however.  How could I?  I have no recording or notes from the appointment except what lingers in my head, but she was profoundly and personally direct in her presentation of the facts.  I believe she fully intended for me to pay close attention to what she was about to tell me.

Here’s how that went:

She rolled the stool she was sitting on across the floor till she was directly in front of me.  She leaned forward, placing her face about six to eight inches from mine… looked me directly in the eyes and said: 
“The tumor in your lung is very large.”  As she said this, she placed her hand against the place in my chest where the tumor is located, positioning her hand and fingers as if she was holding a baseball… perhaps something a bit larger… then a moment of silence while she looked into my eyes… maybe my soul.  She then took her fingers and gently started touching other areas of my chest, indicating where numerous other tumors were now located.  Then, she touched the side of my ribs in several locations and said, “These that have developed in the pleural areas indicate that the cancer is extremely advanced.”

Wow… I always wanted a doctor that would tell it like it is, but this was a harsh reality that was difficult to accept.  How did this get so out of hand?   I knew from the report and viewing the disc myself that I was perhaps in deeper trouble than I have previously been, but to hear it told to me like that was… well… still a bit of a shock.

She then leaned back a bit and told me that she understood my concerns about chemo due to my severe heart and vascular condition… although there were still things about my heart that she was unaware of, mainly due to my ignorance of forgetting to tell her… like the fact that the electrical impulse point in my heart has relocated itself to a very unusual position and sometimes fires backwards… causing the chambers to fire out of sequence.  Yes… I know that’s weird and yes… it is not a pleasant feeling when it happens.

She then recommended… ummm… maybe it wasn’t exactly a recommendation, but more of a command… that I get a biopsy to determine for sure the type of cancer, although everyone before her had assumed that the tumors in the lung, hilum and subcarina were metastasized from the squamous cells first found in the lymph nodes of the neck.  She said that we have to know specifics in order to consider immunotherapy because the drugs are specific to the type of cancer. 

She also said that I had to have a brain scan to see if the cancer had spread to my brain because it likes to travel (my first impulse was to start talking funny, slurring my words and tell her that I couldn’t possibly have brain cancer… but I quickly decided that might not be the best choice I could make at this moment)… and that I would need to attend the pain clinic because of what I’ve been experiencing as of late… evidently… cancer related, though I had suspected that… as well as pinched nerves in the neck and or shoulder.

After all of that… which had me dumbfounded… she said this… if we do this… we may be able to extend your life for six months… ‘pause’… maybe a year… ‘longer pause’… maybe two.

Now is the time that I must consider both sides of this situation… very seriously.  Do I really want to extend my life for six months… maybe a little longer… by undergoing test after test and God only knows how many treatments with medications that are most likely going to make me far weaker than I already am… most like causing nausea and other crap like that… possibly causing more heart trouble than my un-normal heart already experiences… day after day of those six months?  If it wasn’t for those who care about me… I already know the answer.  But I must consider how they feel about this as well.  It’s not an easy decision.

Whew!  I’m worn out already and haven’t even gotten the appointments as yet.  I suppose I spent the remainder of the day in a bit of a disgruntled stupor.  Yeah… I’m not sure of the definition of disgruntled stupor, but I’m fairly certain that I was in one.  Today…?  Well… I’m not real sure of my mental state of being.  I do know that I still have my sense of humor, so things aren’t all bad.  Although, there are some who don’t always  appreciate my un-normal sense of humor, but there aren’t many who haven’t pretty much abandoned the one who is ill at this point anyway, so I’m sure they won’t be in any way offended by my sarcasm or the fact that I often laugh at all the wrong moments. 

I’m not going to make this journal entry as long as the last.  I do know that no one really enjoys reading long posts about someone who is ill or anything else for that matter. 

I wish all of you well-ness, happiness, and a most beautiful day.

Oops…

Update to the update:

I now have appointments for the biopsy, blood work for the VA and to see a Palliative Care doc all next week.  Yummy… Just what my little heart desires.

I had to look up Palliative care… I didn’t even know what it was… then I noticed that the docs of that department are all palliative care and hospice.  Hospice?   Really?  Are they trying to tell me something?

Michael33

 

The Conversation

731 A732 A

Before I get started here… let me say this.  Areas that are glowing indicate cells that are reproducing at an un-normally high rate of speed.  In other words… most likely cancer.  In this case, metastatic cancer.  These two pics show only some of the areas of concern.  Sadly… there are more.

My apologies for the length of this post… I know you don’t like to read long ones.

I had intended to wait until I had actually had the opportunity to discuss the most recent PET scan with a doc… any doc… but it seems I’m having difficulty making that happen.  The new oncologist I saw a month ago, the one I was referred to by the VA… the one that was going to review my test, get with the a new radiation oncologist to discuss and determine a plan of action for treatment… has not allowed me the privilege of hearing from her.  She said that she would get me an appointment with this new radiation doc within two weeks.  It’s now been nearly four… no call from him either.

The doc that set up the scan to begin with… you know… the one that gave me two days’ notice that she was not going to be doing radiation treatments in this area any longer… didn’t call about the results either.  After the report had been sent to her, available for all involved docs to read, I waited a full week in anxious anticipation of getting some clarifications of the report.  No one had even bothered to call.  I would presume that none of these (so called) professionals even bothered to read the report at all. 

Finally… I called my original radiation doc since she was the one who ordered the test, to ‘beg’ for her interpretation of the results.  I got voice mail.  I didn’t leave a message.  She had given me her husband’s number, in case I needed something…?  So, I called him.  He’s an RN and works… umm… worked with her at the office before she quit.  He still does something there… with patients… with the door locked… (Hmmm)… but I’m not sure what.  I told him that the report from my scan that his wife had ordered had been done and the report would have been available a week ago, yet… I haven’t heard from her.  He said he would contact her about it.  I said, thank you very much, I appreciate it.

Two days later, I still hadn’t heard from her so I called him back.  I thought you might find some entertainment, or perhaps… find reason to wonder about the medical profession.  Here’s how that conversation went:

Hi Mr. ******, this is (Me)… were you able to contact Dr. **** about my report?

He then said:  She tried to call you three or four times yesterday…

Me:  Umm… Mr. ******… that’s incorrect… I was home all day yesterday and I got no calls…

Him:  Well… then… it was the day before.

Me:  I was home that day also and she didn’t call…

Oddly… the doc then took the phone away from him and talked to me directly… to my surprise.

She was there at home… and available… although she sounded quite sleepy even though it was around 8:30 a.m.  My apologies… I thought RN’s and Docs got up early on Friday mornings and actually, she was supposed to be working out of town somewhere… or so I was told.  Guess I was wrong.

The doc then said:  Did you pull your results off the site?

Me:  What site?  I don’t know how to do that… in fact there are times I don’t even have internet.

Doc:  Let me pull it up so I can give you the correct information because… it wasn’t very good.

Pause……….

She continued:  The mass in the right hilum was larger than it was… and there were numerous spots in the right side of the lung… and numerous spots along the lining along the rib cage on the right side… and fluid in that lung as well… basically just everything exploded in that right lung.

Me:  So… How do you think I should proceed from here?

Doc:  Well… considering that most of the local physicians just aren’t very interested, I’m sending most people up to the ******** Oncology Group up in ****** and they would at least be able to give you a recommendation of whether they would even be able to do anything with your overall health… because the next line of treatment would be either chemotherapy or immunotherapy.

Me:  Let me ask you this… When I told my VA doc that you weren’t going to be doing radiation therapy any longer, he referred me to an oncologist at *****… I don’t know anything about her but it is Dr. ********…

Doc:  Yeah… she’s one of the new ones that just started… just out of training.

Me:  Yeah…?

Doc:  Yeah…!

Me:  Well, I wasn’t sure where to go from here…

Doc:  Well… do you want me to have *** call up to ******** and see if he can get you an appointment up there?  I’m sure she’s good, but knowing that she’s new and right out of training and she’s in kind of a time of transition…

Me:  Why is ******** a better place to go?

Doc:  ******** is kind of like a mini cancer treatment center of America… they cover everything that could possibly help.  The next thing you need to have done is either some chemotherapy to see if you respond…. or… you may qualify for immunotherapy right off the top… and that’s been working pretty good for some… with very little side effects…  It’s about an hour or so drive from you.

Me:  Yes, and as you know… I don’t travel well at all.  My car is old like me and if I had to go back and forth, either me or my car probably wouldn’t make it.

(((Now… please allow me to interject my own thoughts into this conversation at this point… This doctor and I have had several previous conversations about the fact that I just can’t travel due to my health and heart condition.  That’s why I quit driving to the VA that is also about an hour or so away.  I’m beginning to wonder if she listened to anything I told her over the past few years.  Maybe I should send her a link to this journal… it might be good for any future patients.)))

Doc:  Yeah.

Me:  Do they not do immunotherapy here?

Doc:  Umm… they will… it’s just that the systems here are so… umm… it’s just that they aren’t taking very good care of people… the patients that go into the system… just really get… they just get things done to them that they really don’t need to have done… they’re more interested in capturing charges than helping patients.

Me:  So… can I think about this ****** thing a little bit and call you or *** back?

Doc:  Yes, since you have an appointment with that new doctor you can keep that and then call me and I’ll have *** get you an appointment…

Me:  Okay… well, that appointment isn’t for another couple of weeks and I feel like time is a definite factor since things seem to be growing…

Doc:  Yeah… well… you could call that doctor and see if they couldn’t get you in sooner.  I’m sure they probably could.

Me:  Okay… well… thank you so much.  I really appreciate all the information.  You guys have a great day.

Doc:  Okay… you too.  Bye.

There seemed to just be so many things wrong with this conversation.  Maybe it’s just me.  She really told me nothing except what she read directly from the report itself and didn’t even cover everything that was in it.  It’s almost like she had only glanced over it previously.  She already knew that I didn’t travel anywhere because of my heart, weakness and various other reasons, yet recommended I travel an hour both directions for no telling how many trips.  Then she belittled the ‘new’ doc I had an appointment with.  I’ve never heard a doctor say anything bad about another doctor to a patient… no matter how they really felt.  Then… on top of that… she trashed the facility where that ‘new’ doctor worked.  Really?

So… I still don’t know what to do at this point.  I heard nothing in that conversation that was very helpful to my situation except for me to travel to another city… which I cannot do.  Actually, if I could travel… I would be back to the medicare thing and its delightful 20 per cent co-pay… which I cannot pay any longer… and… if I could travel… the VA would kick me to the curb on providing any help at all for the doc they’ve set me up with here.  Ahhh… health care in America.  What a delight.

I realize this is not much of an update, but I just thought it would be good for me to share one of the unusual experiences of facing terminal cancer that most people don’t seem to want to share.  This is our journal… and I feel comfortable here… sharing whatever I feel like sharing.  

To update you just a bit on the symptoms… All previous symptoms are slightly worse than they were in my previous post.  Plus… I have horrible pain in my neck, across the full length of my shoulder that has been quite persistent, limiting even further my physical ability.  I read where neck and shoulder pain could be caused by lung cancer… or I suppose it could be an impingement.  The vertebrae’s in my neck are all diseased with degenerative disc, compressed and painful, pinching nerves… so there’s no real way for me to know the cause.  (Use caution with this next one…)  I’m also coughing up a bit of blood now.  Something I have evaded through the previous six years of cancer.  The actual source is unknown… I can only speculate. 

Perhaps those who care about me the most… shouldn’t read the following few lines.

There is one more symptom that is becoming more and more obvious I suppose… to me… perhaps to those who care about me. That is… I’m growing very tire… tired of the weakness, of the pain, of the doctors, of the procedures, of the money, money, money that I no longer possess… tired of not being able to do what “needs” to be done, much less… things I’d “like” to do.  I’m tired of mirrors telling me that my eyes have faded to gray… that my face is pale and thin… that the way I have had to age over the past few years has not been kind.  I’m tired of my own pretend happy face.  

So… there… those few psychologists that read my blog… feel free to wrap that up in your psychoanalysis and post in my comments… Go ahead… do it.  I want to know your opinion… off the record of course.  I know… your first thought is that I’m depressed………. I am not.  I’m very ill and I’ve been very ill for some time now.  It’s hard to deal with all one must deal with when they are suffering with life threatening diseases, especially when you know how it affects those who care about you, and dealing with healthcare professionals that don’t really seem to give a shit.  

I still have a sense of humor… although… my sense of humor often falls into the category of sarcasm… at least from time to time.  I don’t feel alone.  I haven’t given up hope.  I haven’t lost interest in things I enjoy.  I still fully enjoy pickin’ my guitar… even though I often have to laugh out loud at my lack of talent.  I have no suicidal tendencies… though… I must admit… I’d still like to jump off one of the tallest peaks of the Alps in nothing but a wing suit.       

You certainly can’t ever say that I don’t place honesty in my journal-ism.

I’ll have another update next week after the appointment with my ‘new’ doc… you know… ‘one of the new ones’… ‘just out of training’… the one ‘in kind of a time of transition’… at the facility that ‘doesn’t ‘take very good care of people’.  Could be entertaining.  I could learn a great deal more than I did from that conversation.

Have a beautiful day… see you next week…

Michael33

 

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