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Wednesday, December 28, 2016

General Update

Dear Diary,

Blood pressure has been real high, (180s) systolic for a couple of weeks now. Talked to the cardiologist about it and we decided to stop the Metoprolol in favor of Carvedilol which is a non-selective beta blocker. We also added Valsartan. Valsartin is an angiotensin II receptor antagonist (commonly called an ARB, or angiotensin receptor blocker), that is selective for the type I (AT1) angiotensin receptor.
Hopefully, these new drugs will get this under control before I have a stroke.

*sips wine*

In other news, I have decided to drop the pulmonary guys that I've been working with for the past year.
I am switching to another pulmonologist at Norton Thoracic Institute which is a part of St. Joseph's Medical Center which is where I had my lung biopsy done.
I have an appointment for the middle of next week for another echo and a vent perfusion scan before I see him the next day.
The last time I had a V/Q lung scan was a year ago when this nonsense first began. At the time, the results were unremarkable. It should be interesting to see what we get this time.
When I get the latest echo, I will ask them to check the status of the myxoma at the same time.

*sips more wine*

All these new goodies mean that the wife and I are going to take a huge financial hit on top of what we already owe. We have coasted for the past couple of months due to my deductibles all being met for 2016 and the insurance picking up 100%.
With my new insurance, I have a much higher annual out of pocket ($7,000) than I did last year so it looks like we're in for a bit of a struggle.

At least I didn't spend this Christmas in the hospital like I did last year. Thank goodness for small favors! Lol!


"Every day above ground is a good day". -- Scarface

Sunday, December 18, 2016

Odds And Ends

Dear Diary,

It's been a pretty good day here in Paradise. I got to talk to my son and his wife on Skype today. They are in Italy for minimally four years courtesy of the USAF.
Apparently they are having the time of their lives. Tried to have a conversation with my soft little granddaughter but she was too intent on harassing her daddy to pay too much attention to me. ;(

My Granddaughter Arabella
The bladder bleed is back and quite a nuisance. If I can get back with my last urologist after the new year, we will address this issue once again.

*sips on a glass of red wine*

Feeling a little lonesome at the moment. The wife is at work until 10:00pm and I miss her. At least I had enough energy to get the dishes done tonight!
Tomorrow is going to be somewhat hectic because I've gotta spend what will probably be a great deal of time on the phone with healthcare providers.

Did I mention that I got clearance to wean off the Prednisone? This is a good thing! I will titrate down from 10mg to nothing over the next couple of weeks. It's been a smooth ride so far but I'll be glad to be off it. It might even make it a little easier to lose some weight.

Does anyone need some humor lately? I know I do! With that in mind, here is a cool collection of Donald Trump jokes to give a chuckle in the wake of the election.
Who knows, it might even keep visitors on my page longer! Lol!

Donald Trump has announced that now he’s been elected President he’s going to ban the sale of pre-shredded cheese.
He wants to make America grate again.
Now that Donald Trump has been elected President, there’ll be hell toupĂ©e.
Donald Trump getting elected President has already had a positive effect on the economy.
Sales of alcohol have never been higher.
Now that Donald Trump’s becoming president, I’m going to Mexico.
Not by choice though…
What is Donald Trump’s favorite nation?
Donald Trump labelled Hillary Clinton “disgusting” for taking a bathroom break during the recent Democrat debate.
Trump himself never has to go to the bathroom, as the crap just comes straight out of his mouth.
My friend said to me, “I hear the FBI have foiled a terrorist plot to kill Donald trump.”
“What, a suicide bomber? ” I asked.
“No, a surface to hair missile.”
Donald Trump has announced that he’s going to ban wind farms now he’s been elected.
He really needs to keep his hair on.
I’d make a political joke…
But it would just end up being elected President.
Donald Trump is going to be the next president, but the real winner is Melania Trump.
Now she can call herself the First Lady instead of the Third Wife.
Why did Donald Trump secretly not want to win the election?
Because now he’ll have to move into a smaller house in a black neighborhood.
What does Melania see in Donald Trump?
10 billion dollars and high cholesterol.
What do Donald Trump and the iPhone 7 have in common?
They both think de-porting is the answer when there’s no more Jobs.
How much is Donald Trump’s life insurance?
Just one Pence.
“You’re telling me I’m losing my job because Trump won the election? Why, because I’m black?!?”
“Mister President, we’ve been over this…”
Donald Trump is visiting an elementary school one day.
In one of the classes, they’re in the middle of a discussion about words and their meanings.
The teacher asks Trump if he’d like to lead the discussion of the word “tragedy.”
He agrees to do so and asks the class for an example of a tragedy.
One little boy stands up and says, “If my best friend who lives on a farm, is playing in the field and a runaway tractor comes along and runs him over and kills him, that would be a tragedy.”
“No,” says Trump, “That would be an accident.”
Next a little girl raises her hand and says, “If a school bus carrying forty children went off a cliff, killing everyone inside, that would be a tragedy.”
“No, I’m afraid not,” says Trump. “That’s what we would call a great loss.”
The room goes silent for a while as no other children volunteer.
Trump looks around the room and says a little testily, “Isn’t there anyone here who can give me an example of a tragedy?”
At last, a little boy at the back of the class raises his hand and says, “If a private jet carrying you, Mr Trump, was struck by a missile and blown to smithereens, that would be a tragedy.”
“Fantastic!” shouts Mr Trump, “That’s exactly right. And can you tell me why that would be a tragedy?”
“Well,” says the boy, “Because it sure as hell wouldn’t be a great loss and it probably wouldn’t be an accident either.”
Now Donald Trump has been elected as President, he’ll be the first man to use fake tan inside the Oval Office.
Clearly, orange is the new black.
What happens when you take a joke too far?
The 45th President of the United States of America.
A swastika has been spray painted over Donald Trump’s star on the Hollywood Walk of Fame.
Police says it’s impossible to tell if it was done by Trump’s opponents or his supporters.
How many Donald Trump supporters does it take to change a light bulb?
Look, we can change the light bulb. That I will tell you. We’re changing it, ok? And I understand what you’re saying, I hear it all the time. People call me and say “Is the light bulb really dead?”. That’s what they are asking me, its unbelievable. The light bulb is in big trouble, that I can tell you. But we are going to change it.
Donald Trump’s foreign policy:
If you mess with the USA, there’ll be hell toupee.
How does Donald Trump plan on deporting illegal immigrants?
Juan by Juan.
Donald Trump has done more than anyone to promote equality…
He’s equally hated by blacks and Hispanics.
In a recent survey, 70% of Americans responded that Donald Trump being elected has made them nervous.
The other 30% said it will make them Canadians.
Donald Trump has announced that now he’s been elected, he’s going to put a wig on the Presidential plane and call it Hair Force One.
If Donald Trump becomes President, it won’t be the first time he’s kicked a black family out of their home.
I just found out Donald Trump is running for President as a Republican.
I thought he was running as a joke.
Do you want to hear a racist joke?
Donald Trump.
 Courtesy: LaffGaff


"Every day above ground is a good day".  -- Scarface

Friday, December 16, 2016

Interesting News (at least to me)

Dear Diary,

It appears that I actually don't have interstitial lung disease after all. Met with the pulmonologist on Thursday and while we were talking, he mentioned that the lung biopsy had ruled that out. Apparently, he thinks the symptoms may be due to pulmonary hypertension along with the tiny blood clots in some of the arterioles of the lungs coupled with possible right heart failure due to the myxoma.
Anyway, it is not an ILD and that's good news.

The plan is to treat the pulmonary hypertension medically which we want to begin ASAP. Problem is, Norton Thoracic appears not to have any record of the right heart cath that was done during the biopsy! That is absurd! The pulmonologist cannot proceed with therapy until he has the data from that test.
What this means is I will need to undergo another right heart cath if the hospital can't find the required information very soon.
There is no doubt whatsoever that the procedure was done as I was awake and alert when they removed the catheter from my neck in post-op.
If the procedure has to be repeated, I'm actually considering asking them to do it without charge, either to me or my insurance. I have no idea if they would consider that but, to me, it's worth a try.

In other news, I've had a recurrence of the bladder bleed, complete with small clots over the past few days. As of today, Friday the 16th, it seems to have resolved, at least for the time being.
It resulted in my not being able to pass urine for a while but a trip to the ED was averted because I was able to self-cath.
We are not sure if this has anything to do with my being on Xarelto® as an anticoagulant. I guess time will tell.

Not much more to comment on till after we get the heart data.


"Every day above ground is a good day".  -- Scarface

Sunday, December 04, 2016

New Insurance!

Dear Diary,

It looks like we have finally found new health coverage for 2017. We went with a silver plan through HealthNet which seems to be about the same as my current plan except that the total out of pocket is significantly higher, $7000 vs $4900 on my current plan.
All my providers are on it and I may be able to get my last urologist back again.
It's going to be very interesting to see what will happen over the next few months when Trump takes the reigns.

In other news, my weight has now increased to 288 lbs and is significantly affecting my ability to breathe. I am now using 4 liters of O2 as opposed to 3. The perceived need for this increase coincided with my weight increase. Not good, not good at all!  :(

Some good news for a change. It appears that we will be able to get a lot more financial assistance than we originally thought. So far, our medical/surgical debt load has been decreased from nearly $80,000 to around $13,000, a much more realistic target. We are extremely grateful!

The surgical wounds are healing well and the pain level has dropped off a lot. I am off the oxycodone now and not taking anything for pain relief. I guess I've been given a good example of what to expect when I have the heart surgery.

I certainly never expected the so-called 'Golden Years' to be like this.


"Every day above ground is a good day".  -- Scarface

Monday, November 21, 2016

Today's Appointment With Dr. E And Lab Reports

Dear Diary,

Saw my GP today. Went over a bunch of stuff. He is happy with my A1C which was 6.4%. He says he's happy with anything under 7%. If he's happy, I'm happy.  :)

The PSA was down from 4 months ago. 1.8 to 1.6 now. Quite a surprise there as I had fully expected it to have doubled again. Not really sure what's going on there.

The rest of the lab work was unremarkable.

I had him do a DRE just to make sure there weren't any new changes to the prostatic fossa. So far, all seems to be well at that end.
I haven't spoken to my RO yet regarding the PSA results but I suspect he will want to wait at least another 3 months before we consider ADT.

I officially began taking Xarelto® today. I guess that means I won't have to keep going back for INR testing every couple of weeks.
Because it has a different mechanism of action, we are hoping it will help to clear the remaining micro thromboemboli from the affected arterioles.
I see Dr. K, the pulmonologist in a couple of weeks. Hopefully, he will have gotten approval for the drug he wants to use to treat the pulmonary hypertension.

If I don't happen to post anything before the holiday, Happy Thanksgiving to all!


"Every day above ground is a good day".  -- Scarface

Saturday, November 19, 2016

Update From Last Thursday

Dear Diary,

We saw the new pulmonologist, Dr K last Thursday. Nice guy. He believes that, now that we have the biopsy results, we can actually develop a plan of action for this never ending saga.

He wants to begin by getting me off warfarin and on to Xarelto® (Rivaroxaban). I was supposed to be on this from the beginning however that proved impossible due to the OTC price coupled with the fact that my insurance wouldn't cover it.
Interestingly, Dr K was somehow able to get coverage for me which will last until I change insurance at the beginning of the year.
He is also going to directly treat the pulmonary hypertension issue with another drug that we need to get a pre-auth for.
Right now, we're waiting for records to be transferred to Dr K from St Joe's.

I'm still having significant pain from the procedure. It gets a bit wearing toward the end of the day.
I'm trying to stay as active as my lung capacity will allow which isn't that much but I guess anything is better than nothing.

I have an appointment with my PCP, Dr E on Monday. We will be discussing my latest labs as well as my current PSA. 


"Every day above ground is a good day".  -- Scarface

Wednesday, November 09, 2016

Big News!!

Dear Diary,

I had my follow-up visit with Dr H, the surgeon AND WE HAVE A DIAGNOSES!!

Turns out St. Joe's ran my stuff by a few more high power players including the Mayo Clinic.

The diagnoses is chronic passive congestion. This is a new one on me so I really can't comment on it much. There is also evidence of old clot material (blood) on some of the smaller pulmonary arteries

The next step is to make an appointment with the pulmonologist and cardiologist and develop a game plan on how to treat this. The disease, at this point is not fibrotic but may become so if we don't treat this. How effective treatment will be is unknown.

The stickler here is the cardiac myxoma may be influencing this to a more or less extent and we can't take it out until my lung function improves, if it ever does.

So that's where we stand at the moment. I'm going to have at least one glass of wine now.


"Every day above ground is a good day".  -- Scarface

Tuesday, November 08, 2016

Day 7, Election Day

Dear Diary,

Well, I pretty much caved in today and used my oxycodone. The pain level has been greater than 7 out of 10 for the past few days so I'm trying that to see if relieving the pain helps my ability to breathe.

We got the preliminary surgical biopsy report back yesterday. It was unremarkable. The specimens will now be sent to at least a couple of other labs for verification and there are several other tests for molds, fungus and other environmental agents currently pending.

As far as the election goes, the mood at Casa del Robbins is less than joyful. We do not have the luxury as some do of leaving the country in the event of a Trump win.
The left has had ample opportunity to act against the right wing insanity but has failed to do so.
Each successive generation seems to be dumber and weaker than it's predecessor. There is more to life than extreme sports, video games and Facebook. Wake up people!
We are losing the first president in decades with enough courage and intelligence to clearly understand and act against the problems our country faces.

Now a Catholic Church in California has declared that anyone who doesn't vote for Trump will be damned to Hell.

I rest my case!


"Every day above ground is a good day".  -- Scarface

Sunday, November 06, 2016

Day 5

Dear Diary,

It's now day 5 since the biopsy and I still feel like I was hit by a truck. Respiration is about 50% of what it was prior to surgery. I'm trying to be good about using the spirometer at least 10 times/hr.
Still hard to get a good night's sleep because I normally toss and turn and it is very painful to do that right now.
I have a script for oxycodone w/acetaminophen but I haven't filled it yet. The main goal right now is to get my poor lungs back to where they were before the procedure...minimally.

It may be as much as five weeks before we get any results back. I really hope this wasn't all for nothing.

The bladder has returned to normal function after hosting the Foley for three days. I'm very surprised and very grateful that it didn't start bleeding again.

Time for me to take another break.


"Every day above ground is a good day".  -- Scarface

Friday, November 04, 2016

Lung Biopsy Done

Dear Diary,

I finally arrived home last night (Friday) from three days in the hospital. They removed 3 small wedges from different areas of the right lung. We all hope that this will be diagnostic in regards to what's been going on with my respiratory system for almost all of the past year.

For all of my millions of devoted followers who may be curious, yes, the two to three days post- op period hurts like hell! This was a visual assisted thoracoscopic procedure (VATS) where they make a few small incisions and go in between the ribs with a camera and remote biopsy tools.

The procedure went well and I was in ICU between 3 and 4 hours. The extra time was because they also did a right heart catheterization to rule out pulmonary hypertension. This was a good idea because it turns out I do have moderate PH.

I'm going to keep this update real short because I still have significant pain and fatigue.

More later.


"Every day above ground is a good day".  -- Scarface

Friday, October 28, 2016

Bottom Of The Barrel!

Dear Diary,

It appears that, with all the weird things going wrong with me lately and the general direction my life seems to be taking that I have finally reached a new low, the proverbial 'bottom of the barrel'.

This morning began uneventfully enough. I woke up a little late (you can do that when you're retired), got up out of bed and immediately noticed that our dear, demented cat, Pumpkin, had decided to leave me a gift in the form of a nice, fresh, well formed turd.

I knew he had visited me in the night as he frequently does but I had no idea he was bringing gifts!

I guess he figured that would fit in nicely with my present lifestyle. He had placed it carefully, in stealth mode, on my exposed right side.

We are used to getting up in the night and stepping in small pools of cold vomit (hair balls) but this was a new low for him.

He is 19+ years old and following way too close to his daddy!

Cats....gotta love "em!


"Every day above ground is a good day".  -- Scarface

Thursday, October 27, 2016

Insurance & Treatment Issues

Dear Diary,

Feeling really depressed today. I spent part of the morning researching my upcoming insurance options for 2016. It appears there aren't any!
My current plan is no longer being offered and my government subsidy that we have been relying on is going to be reduced significantly, partly due to my wife's new part time employment.
I looks like average monthly premiums with either private insurance or Federal programs are going to be around $2,000/month. We are currently paying around $300.
Since premiums that high effectively negate our monthly income, it appears that I will have to go without health insurance. With my current health the way it is, that is scary!
If my PSA continues to rise as it has over the past few months, it is expected that I will begin hormone therapy in the form of Lupron/Casodex, probably every 3 to 6 months'
Lupron is running about $2,000/dose. Not sure about Casodex but is most likely very similar.
Even with insurance, these drugs are far above our budget.
Unless something can be done to regulate these insane prices, tens of thousands of people are going to suffer and die, well before their time, myself included.
The key, I guess, is to try and hang on for another two years so I can get Medicare. Even if Hillary does get in, I doubt that she'll be able to pull off  an early 'buy in'.

I guess my next entry will be next week, after my lung biopsy. Not sure how long I'll be in the hospital this time. After that, we will need to address the heart surgery if it appears that I'm strong enough.
If anyone out there has a little extra cash, any donation to helps. We will never be able to pay off my medical bills in our lifetime but we will keep trying!
Thanks so much to those who might consider helping us out as well as those who already have.


"Every day above ground is a good day".  -- Scarface

Thursday, October 20, 2016

Finally, The Lung Surgery Is Scheduled

Dear Diary,

The last time I posted, we were on track to see the new surgeon, Dr H, at St Joe's. The appointment went well and the wife and I were duly impressed with the surgeon as well as her staff.

We now have a date of November 1st at 7:00 am to do the biopsy. I will go in the day before for the pre-op testing. Dr H will try to do the procedure as minimally invasively as possible. This would involve video-assisted thoracoscopic surgery (VATS). If this proves impractical, she will then do a full thoracotomy. Depending on the procedure and any associated complications, my stay at the hospital should be anywhere from 2 days to a week. The procedure itself is estimated to take around 45 minutes to an hour, barring complications.

During the initial meeting, we were warned that there was a possibility that the biopsy might not be diagnostic. We are keeping all our fingers crossed that that is not the case!

As I mentioned previously, we are holding off on the heart surgery until we get a good handle on this lung issue. Holding off is a bit of a risk but it is one we have to take.


"Every day above ground is a good day".  -- Scarface

Friday, September 30, 2016

Let's Play Musical Surgeons

Dear Diary,

Ok. Whoever is following this journal, please disregard the previous post regarding my new surgeon and the date and location of the procedure. They have been cancelled.
To make a long short, it turns out that Dr A's office failed to get a prior-auth from my insurance company before they scheduled my surgery. Now I get a call from the office a couple of days ago saying that they were going to have to cancel the procedure because the facility wasn't contracted with my insurance. Great!
So they referred me to a surgeon at St Joseph's which, is contracted. We sent all my records over to their office, the surgeon reviewed them and promptly referred me to his partner, an oriental lady with excellent credentials. I will see her on the 12th for the initial consultation after which maybe we can actually get something accomplished!
I need to remember to remind them to get the prior-auth in a timely manner.

In other news...

I have discovered that I can go off O2 and survive very well on room air all day if I wish. I'm not really sure what this means in practical terms but I like it.
This is not to say I'm no longer desatting because I still do on exertion. It's just that for some reason, I don't seem to desat on room air when I'm sedentary which I did a few weeks ago.
If I do anything more than mild exertion I still use 3 liters to avoid serious desatting.
I'm hoping this is not just a temporary improvement.


"Every day above ground is a good day".  -- Scarface

Thursday, September 22, 2016

Cardiac Update - Visit With The Surgeon

Dear Diary,

We saw my new cardiac surgeon, Dr A today for our initial pre-surgery consult. The outcome was pretty much what I had expected. He feels very uncomfortable going in for the myxoma with my lungs in the shape they're in. Says I have about a 6 or 7% chance of dying. He is worried that they wouldn't be able to wean me off the ventilator post-op.
He feels that the current risks of open heart surgery far outweigh the risks presented by the myxoma for the foreseeable future.

All that being said, he does not have an issue with getting a wedge biopsy of the lung tissue. That will involve laparoscopy and a breathing tube when I wake up. The big plus is that I don't get my chest cracked open. Thank goodness for small favors!  ;)
With a little bit of luck, they will then be able to positively identify what the hell is wrong with me. Then the issue will be can it be reversed or do I stay oxygen dependent for the rest of my life?
I will get the biopsy done on October 12th at Banner – University Medical Center Phoenix .
Hopefully, I will not be in the hospital more than a couple of days.

I'm back to using my spirometer on a regular basis to see if that helps increase my lung capacity. The last time I got sick with that 24 hour flu like illness, I lost 50% of my capacity. I'm hoping it won't take too long to get it back.

I should be getting some feedback from the cardiologist and the pulmonologist within the next few days. I'll post updates as I get them.


"Every day above ground is a good day".  -- Scarface

Friday, September 16, 2016

Pulmonary Test Results

Dear Diary,

We just got back from my follow-up appointment with the pulmonologist. This was where I get the results of the 'body box' and the arterial blood gas tests.

Believe it or not, there is a little bit of good news. The results from the pulmonary function testing shows that my total lung capacity has increased from 28% a year ago to 60% now. This is very good.

Blood gases indicate that I am not retaining CO2 which is also very good.

We have also pretty much ruled out IPF (Idiopathic Pulmonary Fibrosis) I have been told, however, that if we do nothing about this lung issue, it will ultimately end in IPF.
The wedge lung biopsy which will be performed during the heart surgery will be 95 to 100% definitive as to what is wrong.

I have now been ruled healthy enough for cardiac surgery which, barring objections from the surgeon who will perform the procedure, will take place within a month. I see the surgeon this Thursday and will have more interesting news then.
As I mentioned in a previous post, the pulmonary people's main concern is how long I will have to remain intubated before I can breathe on my own. To me, that's a little bit scary.


"Every day above ground is a good day".  -- Scarface

Friday, September 09, 2016

Real Quick Update

Dear Diary,

I had my lung function test yesterday. Won't know the results until this Friday when I see Her Highness.
Still need to get an ABG (arterial blood gas) done. Could have gotten it done yesterday but the hospital/insurance interface was fucked up, as usual.

Looking forward to the upcoming appointment with Dr A, the cardiothoracic surgeon on the 22nd.
Hopefully, I will live that long. This is getting old...real fast!!

I am preparing myself to hear the worst. "We cannot operate on you because you would likely not survive the procedure".

I just don't want to leave my wife alone. She has done so much.


"Every day above ground is a good day".  -- Scarface

Sunday, September 04, 2016

Sharing My Annual Update For YANA

Dear Diary,

Hi folks,
This is the latest update since August, 2015. I really wish I could say all is well but that is not the case.

Since the end of the IMRT treatments in 2012, everything has been ok in the sense that there have been no catastrophic issues to deal with.

In July,2015, I began to notice blood spotting in my urine. Went to my primary Doc who thought it might just be a UTI.
Things went well for a couple of weeks till one morning, I went to void my bladder and it was pure blood!

In an effort to avoid writing a large book about what happened during the next year, I am going to just give the facts with short commentary.

Turns out, I have radiation induced hemorrhagic cystitis. It appears that during treatment, the beam took a little more than intended and the bladder lining was essentially "burned". This resulted in the formation of new blood vessels in the bladder lining which are extremely delicate and tend to bleed if disturbed at all. This issue wound up requiring two separate surgeries, a week apart to control. Quite honestly, it was pure hell for awhile. I still have occasional spotting if the perineal area receives any significant pressure e.g. bike riding.

To make matters worse, the cancer is back. PSA was fairly stable for nearly three years. My last test, around a month ago revealed that it doubled in three months. 0.8 to 1.8. Not good.
If, in fact this is a true trend, we will probably start ADT in the form of Casodex first for a month or so and then begin Lupron. I am not looking forward to that! At this point, we do not know where the cancer is located and it is way too early for scans. Am I scared? I guess, a little bit but I have at least two other potentially life threatening conditions running concurrently and the cancer is the least formidable of them.

Now, the answer to the big question. If I had to go through all of this again, would I change anything?

Actually, very little. Please bear in mind that my case is somewhat atypical and most prostate cancer patients will never go through this nonsense.
What I might do differently would be to use radiotherapy in the form of Brachytherapy (seeds). Surgery, in my case, was not curative and I was left 100% impotent as well as 100% urinary incontinent. With brachy, you don't have issues like positive margins which seems to be what got me.

Most importantly, make sure you know and understand all your options when you are diagnosed. I moved far to quickly out of fear. Even if it is a highly aggressive tumor, it is not going to kill you today, or next week or even next month. Taking one's time, within reason, can avoid a lot of unwanted side effects.

I honestly have no clue what my future holds. I just play it a day at a time.
Cheers to all the members of our unique club!  -- Dave Robbins


"Every day above ground is a good day".  -- Scarface

Friday, September 02, 2016

Today's Pulmonary Appointment

Dear Diary,

The appointment with the pulmonary tech was pretty uneventful. She recommended I go back on the steroid inhalation powder for the next two weeks to see if it resolves the tickling in the upper chest.
She gave me two sample boxes the last time I saw her. (Free is good!) I've used it before to see if it would affect the dyspnea. It did not. We'll see if it works for this.

We scheduled a 'body box' test for the 7th. This will assess my current lung capacity. This is not to be confused with a 'body bag', ROTFL!! I have had one of these before. (Not a body bag, a body BOX!)

Here's What It Looks Like.

We will have a follow-up appointment on the 16th.

We also scheduled an 'ABG', (arterial blood gas) test because the one I had months ago may have been incorrectly done. The blood draw was done on O2. It should have been drawn on room air.
Buncha clowns over there, I say!

Her highness, the tech, explained to us that the primary mortality issue in my case is is whether I can breathe on my own when I come out of anesthesia. According to her, if I can't, they will simply keep me mildly sedated and intubated until I can.
She said that unless I have had a bad experience with anesthesia before, which I have not, that scenario would be highly unlikely.

I guess that sums up today's action pretty well. Wishing everyone a safe and happy Labor Day Weekend!


"Every day above ground is a good day".  -- Scarface

Thursday, September 01, 2016

Mini Update

Dear Diary,

Sorry about the lack of entries lately. To be honest, not much has happened since my last post.
I'm off the Levaquin®, hopefully for good. I still have that annoying tickle in my upper chest which makes me cough when I inhale deeply. O2 sats are still poor and I am still using O2 at the rate of 3 liters/minute most of the time.

I'm seeing one of the pulmonary team tomorrow regarding the tickle and cough. I want to see if I can get her to prescribe some kind of inhaler to see if it might open my airways a little bit.

We may have finally found a cardiothoracic surgeon. We'll refer to him as Dr A. He was suggested by Dr J, the pulmonologist. We have verified that he does take my insurance but I won't be able to get an introductory visit until near the end of the month. More on him later.

My wife has secured a part time job as a deli clerk at Fry's. This will provide a little bit of greatly needed cash. It won't pay the medical bills but it will keep us out of  the local soup kitchens.

More later.


"Every day above ground is a good day".  -- Scarface

Sunday, August 21, 2016

Another Saturday Night At ER

Dear Diary,

Just got back from the emergency room...again. Looks like we still have pneumonia lingering in the lower left lung base. I'm now back on another ten day course of  Levaquin®

They did another CT with contrast and compared it with the last one I had and apparently there is more improvement with the 'ground glass opacity' issue. Main issue now is it appears that the ugly density that was residing in my lower left lobe has decided to return.

The scrub gods are fairly certain it is pneumonia.

They are getting to know us down there at Scottsdale Abrazo. We have arranged for the entire radiology department to be my pallbearers. They have yet to find out that I'm being cremated.

As a matter of fact, I'm not even sure if my lungs will burn being as how they're so full of fluid!
The rest of it shouldn't be a problem considering my liquor consumption. Lol!

Just so ya know, this is just a weak attempt at 'gallows humor'. Take it light, I do!


"Every day above ground is a good day".  -- Scarface

Thursday, August 18, 2016

At Last... Some Real Progress!

Dear Diary,

Guess what? When I saw Dr M, the cardio guy, he actually had good news. It appears that he finally got together with Dr J, the pulmonary guy and they came to an agreement.
Dr J has found a cardiothoracic surgeon who they both trust and respect. He will do the tumor removal and the lung biopsy at the same time. This will be a somewhat risky procedure but nowhere near as bad  as going in twice!

The procedure will most likely be done at Banner – University Medical Center Phoenix.It has an excellent reputation and I hve been there many years ago. We will be finding out if my insurance will cover any of this within the next two weeks. Then we will sit down with the surgeon and have what will, no doubt, a very long conversation.

A date for the procedure will then be set and I will begin my pre-surg testing.

This ordeal will be long drawn out and very painful but I think I can get through it with a little help from my friends (not the Fentanyl® and the Morphine® but my real friends, if I have any left!)

All I really have to do is wake up and do what I'm told! Lol!

More news as it becomes available. Wish me luck! This will be the biggest challenge of my life (except high school math!)


"Every day above ground is a good day".  -- Scarface

Wednesday, August 17, 2016

Short Update On Plans

Dear Diary,

This entry is actually more to keep your attention than anything else. I know how incredibly boring a lot of these cancer diaries can be (including mine)!

Tomorrow, the wife and I have an afternoon sit down with my cardiologist to get an updated  Doppler for comparison and find out if these two jokers have made any progress as to locating a high risk cardiothoracic surgeon who will even consider touching me. Time is not on my side here and I have begun to make plans proactively lest things turn out less than favorably.

My life has been a disaster of my own making for most of my 63 years. Since we were married 23 years ago, All these years, I have restricted Karen's progress in most of her interests. She has reciprocated by supporting and assisting me in all of my endeavors.
My feeble attempts at returning the endless gifts she has selflessly given me cannot be repaid in either of our lifetimes.

I do not know how give and express real love for another person yet my wife gives love unconditionally, without expecting reward. I am in awe of that!
I truly owe her my life. If there really was a Heaven, and if she was amenable, I would surely want her by my side for all eternity.

I love you, Karen under all circumstances, for all of eternity.


"Every day above ground is a good day".  -- Scarface

Tuesday, August 16, 2016

Brief Summary Of Last Week

Dear Diary,

Monday: Saw Dr E for a general follow-up. Got a bunch of prescriptions refilled. Lab results were ok except the hemoglobin which went down to 11.8 from 13.
Probably from so much rectal bleeding. (hemorrhoids)
It was his first day back from vacation and he was running around like a chicken with it's head cut off!
Forgot to mention that over that weekend, I was trying to clean up some broken glass on the front patio and managed to fall into the pile of it putting several nice gashes in the palm of my left hand.
Interestingly, for being on warfarin, it didn't bleed much. I was prepared to go to the ER but the largest bleed stopped in about 30 minutes.

Tuesday: Went for my INR with Dr M. Have another one coming up in a month. Warfarin is currently very stable which is convenient.
While we were there, we scheduled another Doppler to check on the progress, or lack thereof on the part of the Myxoma. I get that on the 18th.

Wednesday: That was the day we went to see DrY, the RO. We had what I consider a good meeting.
We agreed that we are not going to actually 'cure' this so we agree that it's time to formulate a plan designed to slow or stop the cancer for as long as humanly possible.
We will probably kick this off within the next six months. Within that time, I expect to be having as least two consultations with a new urologist and a medical oncologist, both recommended by Dr Y.

Thursday: After breakfast, we took the old battery from the van down to the auto parts store to collect the core charge. $15 is better than nothing!
Spent the rest of the day resting. Did I mention that the wife removed the old battery from the van and installed the new one. I am extremely proud of her (as usual).

Friday: Friday morning, after breakfast, I published the 'for sale' ad for the van in Craigslist. I have never been able to sell anything on Craigslist. We sold the van in a half hour! Go figure!

Saturday: Karen and I both started feeling poorly around the late morning. light fever, muscle aches and pains all over the body and generalized fatigue. I had it worse than she did as toward evening, I could barely walk. During the night, the pain continued and In my case, it affected my lungs causing mild, productive cough and upper left lobe crepitations. We did not sleep well at all!

Sunday: Slept all day!

Since then, most of the symptoms have either resolved or have greatly improved with the exception of my desaturation issue which appears to have suffered a mild setback. Checked in with Dr E who increased my prednisone by 10mg to 20mg/q.d. He also wants me to use Lasix® on a daily basis, at least through the coming weekend.

Well, I've got a few chores to do so more later.


"Every day above ground is a good day".  -- Scarface

Wednesday, August 10, 2016

Visit To The Radiation Oncologist

Dear Diary,

As I mentioned last night, I went to see Dr Y, my RO today to discuss the latest fun and games.
He is inclined to consider a PSA of 1.8 still very low. He did however, state that, because of the extremely short doubling time, I could theoretically be looking at metastatic disease within the next 12 months. Bummer! :(
What this means in a practical  sense is I will most likely be looking at first line hormone therapy much sooner than I thought. It appears they will probably start me on Casodex® for a while before switching to Lupron®. The goal here is simple, to impede the progress of the disease as long as possible. I am cautiously hoping for another ten years however that is asking quite a bit.
Factually, the cardiac issues could kill me at any time as opposed to the cancer which will probably take years.

I sure hope they have decent booze in Heaven (or Hell). Personally, I'm betting on Hell!  Lol!

Actually, the irony of this is funny. Doctor says I'm gonna die, they just don't know when. We've all had that death sentence since the day we were born!

Dr Y was able to give me the names of both a urologist and a medical oncologist within his medical group which he highly recommends. Because they are the same group, the insurance company should have no issues with it.

Next update will be the heart issues.


"Every day above ground is a good day".  -- Scarface

Tuesday, August 09, 2016

General Update On All Conditions

Dear Diary,

There is so much going on in my life right now it would take a book to describe it. That being said, I'm only going to update the most recent changes for all my annoying ailments.

(1) Cancer: As I feared, my latest PSA has doubled from 0.8 three months ago to 1.8 at last labs. This is a clear indication that the residual disease has become extremely aggressive within the past 12 months.
I will see Dr Y, my RO tomorrow at 2:00pm. I have no idea if he will want to start hormone therapy this early or not. I will update tomorrow.

(2) Lungs: I saw Dr J, my pulmonologist this past Monday. We went over the newest CT scan ( see image below) to compare with the previous ones. Apparently, there is some improvement over the last time. The ground glass opacities are somewhat improved over the last one a few weeks ago mysterious mass in the lower left lobe is gone.
The opacity represents accumulated fluid in the alveoli (air sacs) of the lungs.
This is the reason I am on Prednisone® and Lasix® for so long.
Once this is corrected we have to find out what caused it in the first place!

(3) Heart: Dr J is looking into finding a surgeon who is experienced in high risk cases and who would do the removal of the Myxoma and also do a wedge biopsy of the lungs at the same time.
Does that sound strange/ Not really. We need a wedge biopsy to begin with and this would save me a second major surgery.
I'm all for it.
I am requesting another Doppler echo from Dr M, the cardiologist to see if the tumor is increasing in size. Hopefully, there has been no significant change.
Still on warfarin at 7.5mg q.d.

(4) Bladder: Not too  much new going on there, thank goodness! Total incontinence and the occasional light bleed seem to be the order of the day.
The internal hemorrhoids are bleeding a lot lately. If I make through all this current crap, I'm going to have to get something done about them. They are definitely contributing to my tendency for anemia.



"Every day above ground is a good day".  -- Scarface

Monday, July 25, 2016

Quick Cancer Update

Dear Diary,

I had my appointment with Dr E, my primary today. Got the results of my latest PSA too.

Bad news!!

It has gone from 0.8 three months ago to 1.8 now. This means it has doubled in three months which means not only is the cancer back, but it is also very aggressive.
This came as a big disappointment, needless to say especially as we're flat out of booze with no money to buy any. Yes, I rely on booze to get to sleep at night...sue me!!

Turns out Papa is a whole lot sicker than even I thought.

We are now going to throw this into the (hopefully) capable hands of Dr Y, my RO (Radiation Oncologist) and see if he can figure out a way of buying me a few more years. It is not a question of 'if' now but 'when'.
So, it comes down to the reality that even if they fix my lungs and my heart, (and the odds of that are slim), the cancer will now definitely get me in the end. I never thought I was going to beat cancer, you don't do that. I was just hoping to stretch it out for ten years or so.

I intend to keep on updating this diary as long as I am physically able to, hopefully for a number of years. I will try my best to keep a sense of humor and educate whomever is interested in the process of dying from a personal perspective.

My next entry will most likely be after I see Dr Y.


"Every day above ground is a good day".  -- Scarface

Saturday, July 23, 2016

Weekend Stuff

Dear Diary,

We managed to finally get that CT scan we were waiting for done yesterday so the pulmonologists can compare it with the previous one.
Managed to get it done in hospital as an outpatient which means they can roll the co-pays into our ever expanding payment plan.
Now, I just need to reschedule with Dr J on Monday. Hopefully I can get something fairly soon as I'm getting more and more concerned about this heart surgery thingy the longer I have to wait.

Got my lab work done on Thursday for my appointment with Dr E on Monday. This will include a standard PSA which, no doubt will bring bad news.The worst case scenario will be if it has doubled from 0.8 three months ago to 1.6 now. If it has, I may be in deep tapioca.
Regardless of what it is, I will be setting up an appointment with Dr Y, my RO as soon as possible.
I'm having a really hard time coordinating all this crap that's going on with me so I am very thankful for my wonderful wife who does practically everything for me.

For those of you who are placing bets on when I will die and what will be the immediate cause of death, I would put my money on this respiratory issue of unknown etiology. The immediate cause will probably be cerebral hypoxia due to or as a consequence of atypical pneumonia. Big words, deal with it!

Good thing I still have access to booze!


"Every day above ground is a good day".  -- Scarface

Wednesday, July 13, 2016

'Hump Day' Ramblings

Dear Diary,

The wife and I went out yesterday to get my latest INR and a couple of other errands. I had to do this without the aid of O2 as my replacement regular had not been delivered yet.
Things went very well for a change and I didn't seriously desat at any point.

We stopped in at my new urologist's office in hopes of getting the usual 'new patient package'. We got that with no problem but came to find out that out of the six or seven doctors in that group, only one took my insurance and it was not the doctor I had in mind.
We scheduled a tentative appointment with him for late August. When we got home, I decided to 'run his records' as I normally do with new providers and, lo and behold, most of his reviews were terrible! Mostly complaints about his bedside manner, communication, general attitude and attention to detail. So I nixed that one and am now looking for somebody else who is both credible and takes my insurance. That is not an easy task here in Paradise!

I finally got some Tramadol® from Dr E. That seemed to work real well for my back. It's a pity I didn't have it when the spasm first occurred around a week ago. It's always better to treat pain (especially severe pain) as soon as it starts rather than waiting for it to become unbearable. When pain gets to that stage it becomes very difficult to control.

As far as health insurance goes, we are looking into Tri Care which covers military personnel as well as their immediate families. According to my son, depending on which definition of 'immediate family' Tri Care uses, it is possible I could be covered as a 'dependent parent. This would allow me to use Tri Care as a 'second payer' co-insurance at minimal out of pocket expense to me.
We are just now looking into this so right now, it's all pretty much 'up in the air'.
More on that later.

I'm becoming a little bit concerned about this continuing pain in my right calf. It's been going on for about two weeks now and I am at a total loss when  it comes to remembering what I did to it, if anything. My main concern is DVT (Deep Vein Thromboses). This is a distinct possibility as I have had it previously when I was in the hospital. That resulted in three PEs (Pulmonary Emboli) which were, at least in part responsible for the lung damage I currently have.
The diagnoses requires an ultrasound of the legs and, of course my cardiologist is currently out of town so if this gets abruptly worse, it could mean another trip to the emergency room.  *sighs*

We recently received our first official payable invoice from Honor Health. It seems that over the past 6 months, I have single handedly racked up about 75,000 in medical expenses, payable on receipt.
Unless my humble math skills have totally failed me, at a payback rate of $50/month, it would take 125 years to pay this off. Since both the wife and I probably have, at most another ten years to live (if we're lucky) the payback arrangement becomes awkward very quickly.

That's probably enough for tonight and it's almost dinner time.


"Every day above ground is a good day".  -- Scarface