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

An Unpleasant Post

The results of the biopsy are in and… just as I expected… the sample was diagnosed as squamous cell carcinoma.  Duh!  I thought all along that the biopsy was an unnecessary invasion, but the docs insisted that they needed proof.  Well now they have their proof.  I suppose what bothers me the most is that this biopsy was performed on a subpleural nodule, which means somewhere between the pleura and the chest wall… in other words… outside the lung.  I don’t have a good feeling about that part of it at all.  Up to this point, all the nodules were found in association with the lung with the exception of the subcarina.  Now it seems that it is just starting to roam around inside me. 

That first paragraph is from a journal entry I had started a few days ago but hadn’t posted.  At that time I hadn’t been to see the doc to review the biopsy report.  Let me just say that I suppose that Wednesday was a day of reckoning for me.  A day of facing the realities of life and death.  A day where one’s mortality is cast in front of their face with eyes wide open.  A day where the medical profession made a valiant attempt to remove the slightest bit of “hope” from my being.

Here are the words of my doc… “You have advanced cancer… stage four… and there is no cure.”

Wow!  Thanks doc… I needed that on this beautiful Wednesday morning… and how is your day?  What response can a patient possibly make to those words… ‘there is no cure’?  So what do I do now doc… take care of it before the suffering gets so bad that I lose the ability to determine my own fate?  Should I go out this very moment and rent that 1966 Ford Thunderbird convertible to drive off a cliff like Thelma and Louise?  Is it time to order that wing suit and head out for the nearest 6000 foot cliff to fly off of?  What now doc?  What?  Wait another three weeks for test results on the biopsy material to be sent off, to determine if I qualify for immunotherapy?  Oh… sure doc… I’ve got all the time in the world to wait.

Tick…………………………… Tock…………………………..

I’m having a brain scan next week… I suppose it is to see if I still have a brain.  I’ve wondered if they ever get negative results.  I hope I can obtain a disc to view at home like I do with the PET scans.  It will be a new learning experience and it seems that learning just never gets old… even if it involves terrible medical prognosis.  I love to explore… I’m just a little slower at it now than I used to be.

If gross facts bother you… don’t read past this point…

As of this morning… I’m coughing up blood with clots.  No… no one needs to tell me that this is not a good thing.  My doc asked if I was and I told her no, because at that time… I was not.  Today… I am.  If I call them and tell them, I suppose they would just tell me to go to the hospital.  I am not.  I’m going to “hope” that it stops.

Wishing you all a most beautiful day.

Michael33 

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