Tracker Code

Showing posts with label Information. Show all posts
Showing posts with label Information. Show all posts

Wednesday, March 14, 2018

Looks Like It's Bye-Bye To Xarelto

Dear Diary,

Woke up feeling out of sorts today (what else is new)? Sure enough...bad news!

After my usual cup of java, I called up Wal-Mart pharmacy to check on the status of my Xarelto order only to find out that I would be responsible for a $200 co-pay for a 30 day supply!
What I had totally forgotten was that the program from Janssen Pharmaceuticals which has provided me with a year and a half of free product is no longer valid since I went on Medicare.

So...I'm sitting here, eating a bowl of soup and planning out what our next move will be if I'm to remain on anticoagulants for the rest of my life.

I've gotta call my cardio guy and see if he is ok with going back on warfarin like I was at the start of this mess. A little more trouble but dirt cheap and effective.

Back to the soup! ;)


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

Wednesday, March 07, 2018

Today's Six Minute Walk

Dear Diary,

Just had my latest six-minute walk at St Joe's this morning. Despite my recent weight gain of 28 pounds, I only lost 7 meters in distance from the last time which really surprised me.
Their baseline goal is 400 meters in six minutes. So far, I have always come up short of that.
They really want me to get my BMI down to 33, minimally before they will even consider surgery.
My current calculated BMI is 40 and getting it down to 33 would require me to go from my current weight of 288 to 235 before they would seriously consider cracking my chest open.
This is not an easy task! :(
I am going to follow their advice and have a consultation with one of their bariatric docs. I'm not too optimistic that she will be able to help but I'll at least give it a shot.

Medicare kicked in exactly as expected, thank goodness and we had zero payments or co-pays for today's visit. :)

Today was officially my 65th birthday but I don't feel a day over 90, LOL! Trying to decide if I should allow myself a nice, big chunk of birthday cake!!! Updates to follow.


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

Sunday, March 04, 2018

Brief Late Night Musing

Dear Diary,

Just a quick post for now regarding my weight.

I have a six-minute walk scheduled within the next two weeks and I'm gonna fail it for sure unless I can drop a few pounds before then. I'm down a couple of pounds since my recent maximum of 289 but I'd really like to show up for the testing at around 279.

I'm still cramming in the carbs which is ridiculous. As a matter of fact, I just finished a large dinner of pasta and sauce (I passed on the garlic bread)!

I just don't understand why I let myself get like this!

More later.


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

Wednesday, January 24, 2018

Not Quite As "Blah" As Yesterday!

Dear Diary,

So...I'm not feeling quite as bad as yesterday but there's still a lot of mental fogginess and fatigue.
I'm about 99% certain that the ADT is the culprit. If this doesn't get too much worse over time, then it's liveable. There are still no hot flashes but I am getting more aches and pains than I used to.
Who knows, maybe it's all just the process of getting older. :(

Lots of lower back pain lately due to my increased weight. (279 up from 260) I seem to have become a carbohydrate junkie again. I just can't face going back on my keto diet right now!

Along with all this nonsense comes depression. When coupled with OCD, that can be a tough pill to swallow. I find myself thinking a lot about death lately and when and where this might occur. I wouldn't say I'm obsessed with it but it does cross my mind every day.
I suppose that is to be expected, given my age and a long list of medical issues.

I think I forgot to mention that I am now using a cane to facilitate ambulation. I picked one up at the local thrift shop for under $10 and it was exactly the right length! I find that using the cane virtually eliminates the sciatica pain that I've been having. My left leg is about 3/4" shorter than my right so it causes me to have a decided limp which, of course, aggravates the sciatica.

Well, it's high time I went to bed! Maybe tomorrow will be better.


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

Tuesday, January 23, 2018


Dear Diary,

We went out this morning to get my Lupron injection and now, at the end of the day, I feel like I'm crashing and burning. Heavy fatigue and depression.
Lately, I've felt totally unmotivated and foggy minded. I can't even remember to take my meds and when I do remember, I find it hard to get up the ambition to take them!
Thank goodness for my wife as I'd be a basket case without her.
I am definitely losing control of my life. 

It feels like I'm observing life from a remote point rather than participating in it. I sure hope I'm not developing some kind of dementia in addition to everything else.
I find myself reviling the world and most of the people in it. It seems like humanity has gone stark, raving mad and is getting worse on a daily basis.

We both took a nice long nap this afternoon but it didn't seem to "reset" things for me the way naps usually do. I guess we'll just have to wait until tomorrow and see how I'm doing then.


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

Saturday, January 20, 2018

Good News!

Dear Diary,

I'm pleased to announce that I just received my latest lab results for PSA and Testosterone after my first six months of ADT.
My PSA has dropped from 9.3 six months ago to 0.8 now. My 'T' is at 9.
Feeling great and no apparent side effects.
I get my second Lupron jab this Tuesday and maybe some constructive feedback from my trusted urologist.


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

Friday, January 12, 2018

Quickie Update

Dear Diary,

Well, in a couple of weeks I get my second Lupron injection! I've been on bicalutamide and leuprolide for almost six months now.
No noticeable side effects other than a little fatigue and mental fogginess. Hard to differentiate from my normal self. LOL!
I'll get a PSA and a baseline testosterone in a week or so to see if any progress has been made since last June when the PSA was 9.3.
I'm still totally asymptomatic, thank goodness! I guess that's a good sign.
Interestingly, my bladder bleeding stopped a week after I started bicalutamide and has never recurred. Weird!
Glad to say I'm able to get out and about more now, despite the diuretics and diapers. (I am a man of constant peeing)
I'll post again when I get the lab report back.

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

Saturday, December 23, 2017

A Cold Depressing Saturday

Dear Diary,

It's a dreary, cloudy cold Saturday afternoon. Even the two cats are cuddled up together in their corner of the clothes closet. It looks very cute!

Yesterday's aches and pains seem to have subsided a little bit, at least enough that I didn't t need to take anything for them.

Got out this morning and took the wife to work them went to WalMart to pick up some groceries and prescriptions. Made it home safe despite the nutjobs on the road!

Feeling really sleepy now. Thinking of taking a nap. I think the cold weather has a lot to do with it.

Did anybody see the Space X launch from Vandenberg AFB last night around 1900hrs? Awesome!
I was coming home from the store and saw this weird smokey streak across the western horizon at an elevation of approx. 40 degrees. It moved slowly due south until I lost sight of it behind a nearby mountain.
I managed to record a short video of it on my cell phone. I didn't find out what it was until several hours later.
Here's a link to my video: Poor quality but you get the picture. (pun intended)
Space X Launch

OK...time to change my diaper! Life is good!


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

Saturday, December 16, 2017

Weekend Ramblings

Dear Diary,

So... I'm sitting here outside the grocery store on Friday night waiting for the wife to get finished working so I thought I'd use this time to catch up on a few things.

Truthfully, there really hasn't been much to blog about over the past month or so.
As I mentioned before, I'm not really big on posting content just for content's sake.

We spent part of the day yesterday at St Joseph's getting another 6-minute walk test done. My performance was even better than the last time, much to my surprise!
I was able to walk just a shade under 400 m in 6 minutes so they were pleased.
I also had another cardiac ultrasound with bubbles like I had previously. I'm really not quite sure why. Dr. O, the pulmonologist wanted to repeat that specific test as the first one I had was negative.
They have decided to increase my diuretics based on the results of the last right heart cath recently.

Since they increase the diuretic dosages, I have been experiencing really wild weight swings, almost definitely related to water retention.
I'm also having quite a few nocturnal leg cramps which may be related to an electrolyte imbalance.
They've decided to have me get blood work done every two weeks for a while to monitor the electrolytes.
Hopefully, there isn't a problem as the diuretics are quite obviously helping the pulmonary hypertension when used in combination with the sildenafil.

I'm currently feeling alright most of the time with periodic bouts of fatigue which probably attributable to both my intermittent weight gain and loss and the side effects of Lupron therapy.

I'm still trying to stay as true as possible to the low-carb lifestyle but I admit I do find myself frequently cheating which is not in my best interest.
With this water weight issue going on, it is quite difficult to determine what my actual true weight is as it tends to fluctuate anywhere from 2 to 6 or more lbs. everyday.

It's now Saturday night and I'm sitting in the same place I was last night waiting for the wife to get off work so I decided to finish up this dictation.

I went way overboard on the diet again today but at least when I did, I kept the carbs to somewhat of a minimum.

Last but not least, I am clean and green to transition to Medicare this March!
This will remove a huge financial burden from the wife and me, especially as the continuing medical bills keep increasing down the road.


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

Sunday, November 26, 2017

A Few Updates

Dear Diary,
Things have actually been fairly quiet around here lately. For us, that's always nice.

Had an interesting experience recently. I had a routine follow-up with my GP a few days ago. You may recall from my last post that my angiogram in January was clean and green as far as coronary artery disease (CAD). Well, my GP was reviewing my chart, including my most recent right heart cath. when he casually noted that I had significant CAD. WTF??
I explained to him what he should have already known...that I was certified free of CAD in January but he said: "well, I'm just reading you what the report says".
I can tell you I was pretty upset at that news so on the way out, we stopped in at my cardiologist's office one floor down (I even took the stairs!).
We obtained a copy of my last procedure which did, in fact, indicate serious CAD.
By that time, I was nervous as hell! We left the office and were leaving the building when I took the time to look at the report one more time.
This time, I was lucid enough to actually look at the patient name and DOB. IT WASN'T ME!!!
It belonged to another patient of my cardiologist and had been scanned and missed by three separate offices.
Moral of story: ALWAYS be your own advocate and take the extra time to actually read your files and charts!

In other news, I've lost control of my weight again. I've gained 20 pounds over the past few weeks!
this is very depressing for me even if it is my own fault.
I'm going back on Atkins 20, induction phase tomorrow morning. I just don't understand why I keep backsliding and putting myself through pure hell.
I will get back to where I was but it's gonna take a while! :(

No updates on the status of the cancer as yet but we should know something in two or three weeks when I get the next PSA draw. Wish me luck! ;)

The Seahawks won against the 49ers tonight and the Cardinals beat the Panthers! I'm happy! :)

A final note: On October 18th, in the wee hours of the morning, our beloved kitty, Pumpkin finally passed away from old age. He peacefully expired on the floor at the foot of our bed.
Pumpkin was 20 years old and had been with us for 17 of those years.
We miss him terribly!

Pumpkin   1997-2017

We now have two new family members, Jordan and his sister Jesse!
Jordan and his sister are both 5 years old and respectively 20 and 15 lb! We got them a couple of weeks after pumpkin passed away because we felt we couldn't live without kitties.
As luck would have it, we got them from an elderly lady who was planning on moving to Florida with her family so she felt that she couldn't keep them anymore.
We are all in the continuous process of getting used to each other right now and we look forward to spending many years together.

Jesse (Top)                   Jordan (Bottom)

I'm sitting here outside the grocery store right now waiting for Karen to get through work then we're going to go home and have a cozy evening!

That's about it for tonight.


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

Sunday, October 29, 2017

Cardiac Catheterization Update

Dear Diary,

Well, we had an interesting day yesterday.
Spent nearly the entire day in the St Joseph's Hospital cath lab.
We went in at 1 p.m.for what should have been a 20 or 30-minute procedure at 3pm and wound up getting out around 7pm.
Apparently, they had several heart attacks come in on an emergency basis so I was sort of left to last.
When I finally got in, I had the best suite they had available. The whole procedure took about 15 minutes and it was no more traumatic than getting a dental cleaning.

The real good news, however, is that the pulmonary artery pressures are down, significantly from the last procedure in January.
The pressures in January were in the low 70s and they are now in the low 40s which is very good. We still need to get them lower but this shows that the sildenafil is definitely working.

They did some special testing to find out whether the pulmonary vessels were reactive or nonreactive. Apparently, they were at least mildly reactive which gives me the possibility of being able to use different medicines if necessary.
At any rate, the wife and I are both very pleased with the results, so pleased in fact, that we stayed at the hospital and had dinner at the cafeteria.
We almost never go out to eat you see! :-)

The other good news is that the wife's hands are healing perfectly and the numbness in her fingertips is going away much faster than we expected. She is ecstatic!

All this excitement is being posted a few days after the fact due to server issues with blogger. Anyway, the wife and I are now back to sitting out on the front porch in 100% wonderful weather so I really don't give a rat's ass!


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

Friday, July 28, 2017

A Little More Good News

Dear Diary,

Just had another Doppler echocardiogram on the old ticker to re- evaluate the left atrial myxoma.
It's been a year since the last one when it was first discovered.
Good news! It has barely changed at all! This news buys us more time for me to get in shape for cardiac surgery.

Weight is still decreasing (despite my cheat days) and lab values are good.
No apparent side effects from the ADT either.

Not 24/7 O2 dependent either. Maybe sildenafil is working on my lungs but it sure isn't giving me a woodie! LOL!


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

Wednesday, July 19, 2017

Officially In The 'Lupron Club'

Dear Diary,

Just got my first dose of Lupron yesterday, in the form of an injection in the butt. The area is a little tender but that should resolve shortly.
As mentioned previously, the goal here is to literally "starve" the cancer of testosterone in hopes that is will retard, or even stop the progression for a certain amount of time (the longer the better)!
The average effective range is 18 to 24 months, sometimes less and sometimes much more.
We will have to be content to wait and see.
There are a host of common yet unpleasant side effects associated with hormone therapy and I will be updating if and when they happen.
One of the more common ones is 'gynecomastia' or enlargement of the male breasts. I guess it's fortunate that I've always enjoyed wearing women's apparel! LOL!

I got another Doppler Echogram done on the old ticker today. We need that to keep track of the progress (or lack thereof) of the myxoma. I will know the results of that in about a week. I really hope it hasn't progressed much because I'm still not ready for surgery.

Things are looking much better with the lungs. I was prescribed sildenafil at my last visit to my pulmonologist but haven't been able to get it filled yet due to an unexpected pre-auth.
Apparently, the stuff is really expensive!
Sildenafil is a potent vasodilator and we hope it will be able to relax and open up my pulmonary arteries resulting in at least a modest reduction in pulmonary arterial pressures.

I think I'm gonna go lie down for a little while 'cause I'm getting fatigued

More dirt later!


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

Thursday, July 13, 2017

Some Good News For A Change!

Dear Diary,

So, it's been an eventful past couple of days!

On Wednesday, we saw Dr. M, my cardiologist for a routine follow-up. He is pleased with my progress with my weight and the respiratory issue. We are going to schedule another Doppler echocardiogram for this coming week to check on the size of the myxoma. My last one was about a year ago. The new information will help organize our priorities regarding the heart surgery.

Today, (Thursday) I went to St Joe's for a six-minute walk test and pulmonary function testing.
Apparently, I did very well and there is an improvement from the previous testing 4 months ago.
It was also officially confirmed that I have lost 30 pounds! They were impressed.

After the testing, we met with Dr. O, the pulmonologist to go over the game plan.
He is finally going to start treating the pulmonary hypertension with drugs. We have been waiting a long time for that.

We are going to start with low dose sildenafil aka Viagra as a first line treatment and see if we get a good response. If we do, they will do another right heart cath to check the pressures.
The goal here is to actually reverse this process that is causing the PH. I hope he's right because PH is usually a chronic progressive condition and not reversible.
Cardiac and pulmonary auscultation was unremarkable save for a few fine crackles in the left base.

*sips on a neat bourbon*

As far as the cancer goes, I'm about 2 1/2 weeks into bicalutamide (Casodex®) to see if we can reign in the horses that have escaped the barn. I expect to be starting leuprolide (Lupron®) in about a week.
This is not a cure but it could theoretically delay the onset of metastases and hopefully buy me a few more years.

Any chance of a cure is no longer on the table but long term control is very possible. I am always grateful that I am a Gleason 7 and not a 8, 9 or 10. My heart goes out to those who are.
At this stage, pain control is not an issue but I am very concerned with this current nonsense about opioid regulation. If I live long enough, eventually I will require them. If they become over-regulated, I may face the death my father had and I don't even want to go there!
For folks in my position, opioid drugs are our friends.

*sips a little more bourbon*

We are now into monsoon season here in Paradise with triple digits and high humidity. Hoping we'll get a little rain this year. Every year we seem to get less and less.
Outside conditions are less than optimal for any kind of exercise so, once again, I'm kind of confined to the house.

Well, enough for tonight. Keep the faith!


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

Saturday, June 24, 2017

I Feel Like I'm Falling Apart

Dear Diary,

The past two or three weeks have been pretty rough. My lower back is acting up again to the point where sometimes I can barely walk. It seems to be a pinched nerve (possibly sciatic) that is causing all this pain and numbness in my feet. I'm currently trying a daily regimen of 1300mg of acetaminophen chased with 50mg of Tramadol three times a day.
It's a good thing we kept that walker from a year ago because I'm really concerned about falling, especially when I'm here alone.
It's unlikely that the pain is associated with the cancer as I've had it off and on for many years.
It gets very wearing though, after a few weeks.

I've also been dealing with untreated dental issues including a huge cavity in one of my front teeth. The tooth finally broke off today. I need two extractions. At my age and income, restoration is not an option. I'm looking into local dental schools who might be able to do it for discounted prices.
Turns out, In America, the health insurance industry considers basic dental care a "privilege" and not a necessity. Therefore, they get away with not having to offer it in basic health plans. Sux!

I'm into day 4 of hormone therapy for the rising PSA. No side effects as yet except the strange urge to dress up in my wife's clothing and hang around in ladies' lingerie departments.
No...wait, that's not a side effect, I've always done that!   ;)

*takes 7 pm meds with water, not bourbon*

Last of all, a shout out to my son Chris, in Italy. Your Daddy's trying to reach you on FB but I get no response. Been awhile since we talked. Call me.


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

Thursday, June 22, 2017

Joining The 'ADT Club'

Dear Diary,

A brief update to my last post.
Saw the Uro today and am now officially in 'Club ADT'.
Took my first dose of Casodex 50mg and have a follow-up appointment in 30 days.
At that time, we will start Lupron as well. I hope this will 'reign in the horses' for at least a good while.

As far as the bone scan, he agreed that there was nothing there that was obvious at the present time.
We talked about the merits of additional scans and his opinion was that yes, we could do that, and we would have additional information, however, the
treatment would be the same regardless of the results. Opinions?

Lupron will be about $1500 per injection twice a year. Insurance shouldn't have a problem covering that...I hope.
If they do, we will have to resort to bilateral orchiectomy to hopefully achieve the same goals.

It's not confirmed yet but it's apparent that I have graduated to stage 4 and there is no stage 5 so you figure it out.

* sips bourbon*

All I can really hope for now is that something else takes me out before the cancer does.

It's been a trying week as I am also suffering from excruciating lower back pain unrelated to the cancer. Got some Tramadol from the Uro so maybe that will help. The pain is wearing me out!

*sips more bourbon (no Tramadol involved)*

On the good side, my weight is closing in on 260lbs which is wonderful. I look and feel so much better. Even the wife notices! LOL!

Nothing more to say until I get depressed again.


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

Wednesday, June 14, 2017

PSA Update

Dear Diary,

I forget whether I mentioned this earlier but my PSA is now increasing by leaps and bounds.

The last 5 PSAs are shown below.

0.8 as of 9 months ago.
1.8 as of 6 months ago.
1.6 as of 3 months ago
7.3 as of 05/15/2017
9.3 as of 06/14/2017

Because of the size of the jump, I had another PSA done to rule out an error. Unfortunately, there was no error. In fact, it went from 7.3 to 9.3 in four weeks. Not good!

Uro appointment next Thursday. I will have A DRE and we will discuss the pros and cons of

Casodex and Lupron.

The cat is definitely out of the bag. We just don't know where it is.

I'm thinking we need to start ADT ASAP and worry about the PET scan later.

I'm still thinking that this may be local recurrence in the prostatic bed.

Definitely not a happy camper right now! 😞

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

Friday, June 09, 2017

Update On Bone Scan

Dear Diary,

A quick update.
Just got the full body bone scan today and the tech said there was no sign of metastatic disease.
Uro still has to see the results but hopefully, he will agree.

The next step, hopefully, is a PET scan to see where the activity is located and find out if treatment options
other than HT are available.

The really good news is that the bone scan fulfilled my entire annual out of pocket so for the rest of the
year, I'm covered at 100% Yay!

Won't know much more till we get the PET scan so I continue to be nervous.


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

Thursday, June 01, 2017

Urologist Appointment Update

Dear Diary,

Just got done with the appointment with Dr.F. He spent a lot of time with us and was encouraging but he agreed it is time to act.

He wants to start with a full body bone scan which I will have on the 8th.

Based on those results, we will then look into more sophisticated imaging.

He is a little frustrated because, as always, he has to go "toe to toe" with the insurance to get this stuff authorized.

If the bone scan is positive, we will initiate ADT. Casodex followed by Lupron.

If it is negative, we will have to make the decision of whether to start ADT anyway or to watch the PSA a little longer.

I imagine this is where the MO (Medical Oncologist) comes in. I flat out forgot to ask him if he felt it was time to bring one in!

The options regarding more sophisticated types of scans/imaging are all on the table as far as he is concerned. It's just a matter of getting them paid for.

If there is no visible spread and the disease appears to be still localized, I am interested in taking this to the next level to try to locate and isolate the active area(s) and possibly looking into HIFU (High-Intensity Focused Ultrasound) to try to clean up whatever is left.

I don't know if that will be an option for me in the future but right now I want to concentrate on proving what exactly is going on in there and treating it accordingly.


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

Tuesday, May 23, 2017

Gone And Messed Myself Up Again!

Dear Diary,

I guess it's time to get off the benzos and booze. I'm up to 11 oz of bourbon/night combined with 2mg clonazepam just because my PSA doubled twice in three months. I'm sitting here at midnight wondering if and when I'm going to die and what that's going to be like.

It seems I'm failing every treatment they try and, to me, it looks like I'm going to follow in my father's footsteps, wasting away and screaming in intractable pain at the end.

With all that's going wrong, I'm never going to see my little granddaughter or my son and his wife which really depresses me.

We are now so far in debt that we will never come close to paying it off in our lifetimes.

Below are some pics of those who I may never see again.

My granddaughter, Arabella

My son Chris, my daughter in law Abbie and guess who.
Really sorry for the depressing post but I am trying to get myself and my beloved wife and family ready for reality.
If anyone reading this thinks I am deliberately over-dramatizing my situation, please remember that I don't pay you to read this stuff. This is real life whether you or I like it or not.

Am I feeling sorry for myself tonight? No, just lonely and sad.


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