Learning to Die

Learning to die 3

I’m having a little trouble trying to learn how to die.  It’s really not as easy as it may sound from a distance.  Just what is one supposed to do, how is one supposed to act, what things should one say who knows that they are dying and all the medical professionals around him confirm that belief.  I’ve had visits from a nurse that enrolled me in hospice as an outpatient.  She asked about a million questions and took my vital signs.  She gave me no direction nor clues into what may be to follow.  I guess I’m on my own as to how to handle my own death.  It’s truly a very strange place to be.  I don’t like it here.  Even if I had a time machine, I’m not sure if I’d go backward or forward in time.  I do know that I wouldn’t want to go through all this again and at this very moment… forward in time sounds pretty soothing… though a little bit of quality time with my children before I reach the point where quality is no longer an issue would truly be a wonderful thing.

A couple of days after the nurse visit, I was visited by a minister and a social worker.  That was an unusual visit.  Uncomfortable so to speak… it seems more uncomfortable for them than for me.  In my registration, I told them that I wasn’t into religion as such, but that I was a firm believer and that I was deep into the spirituality aspect of all that our beautiful universe so freely offers to us. There was a very long, uncomfortable time of complete silence, while both of my visitors were looking off into space nodding their heads in the affirmative as if either agreeing with me… very confused by my comment… or agreeing with one another that I was totally insane and should be locked up somewhere.  Whatever their thoughts… neither of them expressed them to me.  The minister prayed for me anyway… sort of… it was more of a save the world prayer and about the coronavirus than anything else.  I appreciated it anyway.  Prayer never hurts.  I said I wasn’t into religion… I didn’t say that I never prayed.

I guess the one thing that came from the hour long visit that was maybe a bit important was this… the social worker asked if I had a plan for when things get worse.  I told her I did not.  I told her that if I was able to find homes for my many rescue cats, that my daughter and her husband had graciously offered to move me in with them in Kansas City while trying to help find homes for God’s little voiceless creatures that reside here with me.  I think that would be a very good idea… at least for me… can’t speak for my daughter and her husband.  There are so many unpleasant circumstances living with someone you care deeply about, who you know is dying.  As for my plan… I told the social worker I had no plan because I don’t know what is available to me.  Evidently she didn’t know either because she had nothing to offer beyond what I told her.

A few days after that I was visited by the nurse that will be my regular nurse and he was accompanied by a second nurse… I suppose training or something.  He asked another million questions, many the same I had already been asked… took my vitals… talked to me about pain meds because I don’t like taking them and not being mentally alert when I do, especially while living alone.  He told me to cut one of them in half and try that.  I told him that I didn’t think you were supposed to cut extended release tabs in half and he assured me that it was alright and the nurse with him agreed.  They said that cutting them was fine… just don’t crush them up.

A few minutes after they left, I cut one of the tabs in half and didn’t like the way the powder inside was falling out of the coated outside.  I didn’t take it.  I Googled it instead… and on nearly every site I checked… it said DO NOT CUT, CRUSH, OR CHIP.  So I called the hospice number and asked to speak to a different nurse.  They connected me with the nurse manager and she said that she would check it out and call me back.  She checked it out, called me… and said DO NOT CUT those pills and that she would inform my nurse.  I suppose he might be a little disturbed by my questioning his expertise… however… those web sites also said that taking the pills cut or crushed may cause fatal respiratory depression.  I don’t think I need that in this moment.  He also told me to stop taking my cholesterol meds and my thyroid meds.  What?  Is this guy trying to kill me off before the cancer gets its chance?  I don’t know about stopping the cholesterol meds but stopping the thyroid meds would put me right back into all the symptoms of hypothyroidism that I was experiencing before the doc found the problem.  I’m weak enough without adding those symptoms back into the situation.  Does this nurse want me to be more miserable than I already am?  Does this nurse even know what the hell he’s doing?  He came back yesterday and apologized for the pill caper.  He was also an hour and a half late for our scheduled appointment.  He first acted like he didn’t know he was supposed to be here at 9am.  Then he said that he got tied up on a conference call that lasted too long.  Excuses, excuses.   I don’t think Hospice and I are getting off on the right foot. 

My symptoms are basically the same as my earlier post except they continue to worsen a bit each day… especially the pain and recently… the coughing up of blood.  To be a bit more descriptive here… I can feel it when the blood begins to gather in my throat.  I can taste it in my mouth and my lips get slightly sticky.  I can’t always cough it up… but I’m nearly always aware that it is happening.  I’m sure you’re not going to find too many patients suffering from cancer… writing about their experiences… that are willing to describe in such detail certain symptoms that sometimes accompany cancer… at least lung cancer.  Some of you probably wish that I would not be so descriptive either… but, as I said from the beginning of this journal… I will tell it like it is and if you don’t want to read it or know about it… well… “Don’t”.

Wednesday morning when I got out of bed to start my day, the right side of my chest felt a lot of pressure.  When I tried to breathe deeply, it felt as though my lung was too full to allow any air to fill it.  It’s a very tight, heavy feeling… kind of like carrying around a sand bag in my lung.  I’m guessing that more of the semi collapsed lobes have collapsed even further, or the tumors are cutting off the air or perhaps… that lung is filling up with fluid.  No way to know at this point.

I know that many of you who read this journal have experienced great pain in one form or another.  Those who have been fortunate enough to have avoided that aspect of life would not understand just how debilitating severe pain can be.  I can’t do anything for more than 5 to 10 minutes without sitting down or lying down to try to relieve the pain before attempting to finish what I started… (picking up and putting away things, laundry, dusting, taking care of kitties… attempting to prepare food… just about anything that makes me bend or stoop or stand for very long).  I can only sit in this chair and type for a few minutes at a time because of the severe pain caused by the tumors gnawing into my rib cage.  Trust me here… it is excruciatingly painful.

The VA called on Tuesday and told me to come in for blood work.  I’m not sure why all of a sudden they want to do blood work unless they have to do it to complete my over the phone yearly exam.  I didn’t question it.  Anyway… I’m glad that they are checking it… I’m a curious person. The results came in and the VA doc said that… other than having very low blood counts… a severe lower abdomen hernia and dying of cancer… I’m healthy as a bear.

So in the meantime I’ll be hobbling along attempting to learn how to die.  I guess it would be hard to find someone with experience of that to help steer me in the right direction, but should any of you have some pointers on the subject… I’m open to suggestions.  Maybe I’ll visit the library and ask the person at the information desk if they have any ‘how to’ books on dying… Hmm… or maybe I shouldn’t.

Until next time… I’ll be wishing you all a beautiful day and exceptionally good health.

Michael33

 

Decisions… in Black and White

Decisions 2

First of all… my sincerest apology for waiting so long to update this journal.  It has been an extremely heart wrenching few months.  I have not been able to think clearly nor to write anything about what has occurred in my life so far this year because the biggest and best part of my soul has been taken from me.

How do you start writing about something so deeply personal that you can’t begin to gather the thoughts that might in some strange way… explain how you feel?  Isn’t that what a journal is supposed to do… explain what’s going on in one’s life?

I’ve attempted to leave those I care very deeply about out of this journal all together.  After all, I started this writing in order to document my journey through time and space while dealing with various stages of cancer with heart disease as a complicating factor.  I didn’t want to infiltrate the privacy of those whom I care so much about.  However… I must say here that my whole life changed forever in the wee hours of the morning of April 3rd… I lost the love of my life… the best friend I could have ever dreamed of… the one who “always” stood by my side, the one who showed me day after day after day… what love really is.  After her long struggle and suffering in an attempt to just… breathe… the world lost a beautiful part of itself.  She showed me what a compassionate, caring human being is all about.  She made me a far better person than I ever was or ever could have been without her.  She taught me that we are all ‘one’ in this world and if everyone would just realize that… our world would be a much more beautiful and peaceful place to dwell.  I will never be the same here without her.  Life can sometimes be quite short… or so it seems… but love… well… love is forever.

Yes… to answer what some of you are asking… she also had lung cancer… as well as additional  serious pulmonary diseases and a very rare autoimmune muscle and skin disease.  She was already in a serious state of weakness.  She really didn’t stand a chance in her attempt to survive cancer.  But, one thing I heard straight from a doctor’s mouth was this… “the chemo is what destroyed her lungs.”  I suppose he was perhaps just thinking out loud and didn’t really intend to say those words in front of anyone else… but I believe that to be the truth.  Please… if you find yourself in a similar situation of needing chemo… think about it very, very seriously… ask questions… find out about options… and if you are already in a weakened state of being…that chemo crap can and will kill you.

Sorry… I had to express my true state of mind before bringing you up to date on myself… which seems so trivial at this point.  Ironic, isn’t it… that I have wandered these pages for about six years… battling cancer… and yet… the love of my life passes before me?  She always said that she wasn’t going to stay here without me… and so… she didn’t.

I will tell you things in this post that perhaps should not be written or spoken to certain people, but I must keep this journal honest and express my deepest and truest feelings at this point of my journey.

I postponed my latest treatment because of the stress and distress that was going on when it was scheduled a couple of weeks ago.  I postponed a CT scan for the same reasons.  I was supposed to have the scan to see if the immunotherapy was working.  Since I already had a fairly good idea that the treatments were not working, I wasn’t much concerned about the scan or the treatment.  The pain level that I have been experiencing for many weeks now, continues to worsen.  The docs and nurses all have the nerve to ask me to put a value of zero to ten on that pain.  What I want to tell them is that the pain has reached the level that I might just pull their fucking heads off and stick them up their asses if they ask me again to put a number value on the pain.  They are the ones that have told me over and over again that advanced stages of lung cancer are extremely painful.

Well… I’m there.

So… last Monday I went to have the CT scan and for blood work to precede my treatment scheduled for Tuesday morning.  On Tuesday I had an appointment with the oncology doc before treatment time to discuss the results of the scan.

Her first words… “How are you feeling?”  What?  How am I feeling?  Really?  I’m in excruciating pain… I’m coughing up blood… I look like a starving human being from a third world country… I’m too weak to even do simple house work most of the time… and I just lost the love of my life… you already knew all of this… and you ask… “How are you feeling?”  What I wanted to say was… ‘come home with me and spend a couple of days inside my life doc… I don’t think you’ll ever need to ask me that again.’

I knew the treatments weren’t working because of the increased pain level.  Trust me… I’ve endured a lot of pain in my life but this is the greatest physical pain I have ever experienced.  Mainly located in the right upper side of the rib cage… from about an inch below the arm, extending about seven inches down the right side is the worst of the pain.  However, that pain radiates around to the back beneath the shoulder blade and around the front to the sternum.

I had told those around me that it felt like the tumors were growing into the rib cage.  As it turns out… they are.

Following the short discussion of ‘how I felt’… the doc said… “Your scan was not good.  The medication is not working.  The tumors have increased in size… they have infiltrated the right side of your rib cage.  That’s why your pain is so severe.”   I asked, “So… where do we go from here?”  She replied that we could do chemo… (using the exact same drugs that just finished destroying the love of my life)… try to find another immunotherapy drug that might slow the progress of the cancer… or hospice.

Hospice… Hmmm… so… these are my choices… I just smiled.  She smiled back and we both knew what my answer was most likely going to be.  She told me to think about it and to call her next week and let her know my decision.  She then added… if you decide hospice, I will get things set up for you.

How about this doc… I’d rather die against the curb, homeless under a bridge than to go to hospice.  Yes… those of you thinking that I am a bit bitter and opinionated are exactly correct in your assumptions.  I know that it may truly become a necessity and I will have no other choice. I’m getting very close to that point in time.  Everything I do… hurts.  I hurt 24 hours a day every day.  It’s gotten very, very old.  I’ve finally reached that point where we as human beings… just don’t have the will to fight it any more.  They’ve showered me with opioids… which I truly despise, but evidently… they are the drugs of choice by the health care profession.  I’ve tried everything they’ve sent me… none of it so far has worked to even lessen the pain to a tolerable level.  I received a new prescription a few days ago, but I have felt too weak and nauseated to even try it.  I must confess that I have tried medical marijuana recently with the approval of all my current docs.  Some strains I have tried don’t help in any way… some make me too sleepy to function in any capacity… but I have found a couple of strains that have actually given me some sort of relief.  They relax my body (which always helps at least a little to ease pain) and relax my mind to the point where I almost….. “Almost”….. don’t give a shit.

Here’s the brief summary of the scan:

Large right hilar mass significantly compressing the right lower lobe pulmonary artery at the hilum as well as compressing the pulmonary artery of the right middle lobe.

Multiple calcified granuloma in the spleen.
Significant mass progression since the PET scan.
No definite hepatic mass.
Metastatic involvement of the lateral right fourth rib and lateral right fifth rib with adjacent chest wall mass.
Calcified granuloma medial left lung base with the left lung otherwise clear.
Progressive nodular areas in the periphery of the right mid and lower lung.
Degenerative changes lower cervical spine.

There it is… in black and white.  Not a pretty picture.  Not a pretty prognosis.

So… for this moment… I have chosen to procrastinate.  Check out what home hospice has to offer that the VA or Medicare will cover at 100%… I’ll be sure and let you know on that one.  I will have to phone my oncologist and inform her of my current… perhaps momentary decision.  I will have to call my pulmonary doc and let her know what I’ve decided about her suggestion… she wants to do a bronchoscopy to determine if the bleeding is coming from the tumor pressing against the wind pipe and possibly remove enough of it to stop the bleeding.  Otherwise… it will continue to get worse.  However… that procedure does nothing to stop the cancer and from all that I have read about that type procedure… it can cause the cancer to spread even more profusely.

Where I go from here… well… it’s very uncertain in this moment, but then… all of life seems to be a bit uncertain.

Namasté

A most beautiful day to you all.  Stay well!

Michael33

First Immunotherapy Treatment

I had a journal entry nearly ready to post but didn’t quite get it finished before having my first Keytruda treatment.  It was a scathing journal entry about the emotional state suffered by so many having to endure terminal illnesses and extremely critical of those who promise you help in one form or another but never follow through.  I may still post it in the near future… there are some who will not be happy with what I have to say, but sometimes… it just needs to be said.

In the meantime… I will bring you up to date on my current unwell-being and the first immunotherapy treatment.  I arrived at the clinic around 7:45 and checked in.  They told me to have a seat in the waiting room.  They came into the room to have me sign insurance papers for the treatment, but they had the wrong insurance.  Not off to a good start.

However… it wasn’t long before they came and got me, leading me to a treatment room well down the hall but right across from the nurse’s station.  As I followed well behind the fast walking nurse to my room, I observed several others receiving treatment in other rooms, all of which were sitting in recliners… some eating and drinking… some appearing to be asleep.  When we reached my room, they told me to climb up on the bed.  What?  I thought I was going to be sitting in a recliner, I said rather jokingly.  The nurse responded by saying, they want you in the bed for the first treatment in case of serious reactions.  They watch you very closely on the first treatment.  Not off to a good start for someone already having serious doubts as to whether to have the treatment or not.

They asked a million questions including my date of birth about 50 times.  They told me that I would get tired of them asking my dob but that is how they make sure you are alert and thinking properly.  Not off to a good start.

After they got me hooked up to an IV with a saline drip and the Immuno drug hung on the IV rack, they call for a verifier.  The verifier comes in, checks who you are, if they have the correct drug ready to go and… yes… your dob.  Everything was verified.

They started administering the Keytruda and said it should only take about thirty minutes for the treatment.  Now that was something ‘good’ that I was happy to hear.  About 10 minutes into the procedure, I got a very strange taste in my mouth, but not so bad that I brought it to the nurses attention and it was helped by a sip or two of coffee.  About 15 minutes into the procedure I became extremely cold and had to ask for a blanked.  Neither of these were listed as side effects on the wonderful Google.  They brought me a very pre-warmed blanket and it was nice to get warm again.

At about the same time that I became cold, I started feeling a bit goofy… I can’t say really that I was light headed, but more of just feeling stupid.  I know that’s a strange way to express it, but that’s the way I felt… just a bit stupid.  That feeling continued from that point to… well… maybe a bit of it still lingering… or perhaps I’ve been dealing with cancer so long and had so many radiation treatments that I’m just becoming brainless.

I was truly grateful to have endured the session and been able to come home afterward.  I had to pick up my new thyroid medication (yes… that’s messed up too… possibly due to radiation as well) on the way home, but I was so very thankful to get home.  I was extremely tired already and running a bit of a low grade fever, so the rest of that day (Christmas Eve) was pretty well wasted… as was the next day.  Now I’m into the third day and still very fatigued feeling, running a bit of fever most of the day while worsening at night.  The pain levels have increased, particularly in the upper right side of the chest around to the side of the chest wall beneath the arm.  I get very light headed whenever I get up from sitting or from lying down or stooping or any other position that I shouldn’t be in.  I have to find the nearest place to sit down quickly or I’ll be horizontal in the floor.  Not a pleasant feeling at all.  I haven’t been very active in several years, but this is becoming quite ridiculous.

I’m hopeful that I will feel like editing and posting the journal entry I have waiting in the files of the more emotional and frustrating consequences of attempting to live with a deadly disease.  It might not please too many who wander here… but it will be good for me to let it out… if you know what I mean.

Today… If I can find the energy to make the walk to the car and then walk inside the clinic… it’s off to the cardiologist so that I can give him something to sit at the computer and grunt about.  I’m not sure why I’m even going.

Old Shoe

A most beautiful day to all of you… stay well!

Michael33

Pondering Consequences

Oliver 2

Well… where to begin?  I suppose this update should include the worsening of symptoms.  I won’t go into detail, but I’m sure most of you can figure those out from previous posts.  The oncology doc called on Monday, sounding a bit excited about the results from the whatever test she was having done to see if I might qualify for immunotherapy.  I met with her on Thursday and as it turns out… I do.  She sort of explained the process, touched lightly on the side effects and said that as soon as they get the insurance to approve the treatment, we would get started.  She then turned me over to a nurse practitioner who supposedly was going to explain it all to me in detail.  She did not.  She had me sign a consent form and turned me over to another nurse to show me around the area where the torture… umm… I mean treatment… will be done.  

What I needed here was time to think.  They were all very anxious to get started but I was not.  I thought that I would have at least a week or so to think about it all while they dealt with the insurance.  I was wrong again.  They called the same day (Thursday) and said that they had received the approval to start.  They wanted to start on Monday.  I did not.  I told them I had a busy appointment schedule that week (at least partially true… but they don’t really seem to understand… “I want to take some time and think about it”) and asked that we start the following week.  Reluctantly… they agreed.  They then tried to give me a late afternoon appointment.  I refused to take it because I do so poorly in the afternoons and I didn’t want to start this process already feeling poorly.  They reluctantly agreed to give me a morning appointment… told me that the actual dose of meds they will be giving me will take about 30 minutes.  I was excited about that part until… until they started telling me that the ones administering the meds… worked all over the hospital and it depended on how busy they were and that the pharmacy sometimes took a very long time to get the medicine down to them and… and… and… in other words… I would be there for hours… waiting.  My first clue was a rather full waiting room in the treatment area when they were showing me around. 

Okay… none of that is good for business nor for my patience.  If they think that I am going to sit there for hours for a thirty minute treatment without complaining or…. perhaps getting up and going home and telling them to call me when they find the time to treat a dying cancer patient… they would be thinking incorrectly.  That’s just not the right way to treat seriously ill patients.    Another thing wrong with the medical profession… none of them want to hire enough staff to properly care for the patients… but they sure want to keep those patients coming in with their money and their insurance cards.  It’s just like calling Medicare or an insurance company or even a medical care facility when you hear… “Your call is important to us…”  now… if you’ll just stay on the line for the next three hours we might take your call or we might just disconnect you and allow you to start all over… or maybe get so frustrated that you won’t call us back at all.

I don’t really feel like getting deep into the… what’s wrong with the medical profession or about the cost of it all today and I’m sure some of you will be thankful for me omitting my blather of all that.  I will however complain a bit about palliative care.  I asked my oncologist if it was necessary for me to go to palliative care and she replied by saying that “we work as a team.”  I suppose that meant that she wanted me to continue to see them.  So… I went yesterday to see the morticians… umm… I mean the palliative care folks.  I was there for more than an hour and a half and all they did was ask a million questions that I have already answered at the previous appointment and then they prescribed some cough medicine.  What?  I don’t do cough medicine.  Ever!  Of course it will most likely be a very long time before I receive it any way since they are attempting to get it through the VA.  Good luck with that one.  Oh… the nurse came back in the room about fifteen minutes after completing all of her tasks with me… shut the door very quietly… and in a soft, almost whispering voice… scolded me for not returning my advance directive to them… dated and signed and witnessed.  I don’t have to see them again until February… which may already be past my expiration date.  Time will tell…

Tick…………………………… Tock…………………………….

The immunotherapy drug they want to give me is called Keytruda.  It’s supposed to be the best choice for the kind of cancer I have.  If you Google the drug, the first thing you see on the official site is this:

Important Safety Information about KEYTRUDA

KEYTRUDA is a medicine that may treat certain cancers by working with your immune system. KEYTRUDA can cause your immune system to attack normal organs and tissues in any area of your body and can affect the way they work. These problems can sometimes become severe or life-threatening and can lead to death. These problems may happen any time during treatment or even after your treatment has ended.

Well… that’s really encouraging, isn’t it?  Then it goes on to give many, many more side effects, most of which are quite severe.

I’m pondering here….

I need time to think about it all.

They wanted to have a port put in my upper chest or neck to administer the drug.

No!  I mean… hell no!

They said they will attempt to administer it by IV but they often have problems with that.

I need time to think… though there are those who think that I should just blindly follow their little set plan of attack like a good little lamb.  I’m not feeling much like being a good little lamb at the moment… so they can forget that.

So… I’m going to go ponder… but while I ponder… I’ll be wishing you all a most beautiful day… and VERY GOOD HEALTH!

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

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