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