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Sunday, January 31, 2016

Looks Like It's Back To Work

Dear diary,
Today was  the first day in about a month that I've been able to get up to Carefree to do our bi-weekly office cleaning job. I was dreading it but it turned out that I felt pretty good afterward. we just took our time and things went smoothly except my being extremely short of breath.
As usual, the wife was a huge help, I don't know what I'd do without her. I hope I never have to find out.

I decided to do the whole thing sans oxygen. Took us around three hours as opposed to 45 minutes to an hour because we were going so slow but at least we got the work done. When we finally arrived home, the O2 was about 88%. The docs would prefer 95%+ so this probably means I need to spend a lot more time on the spirometer.

I DO feel like I've lost a few brain cells along the way. I speak a lot slower than I used to and I forget a lot in the short term plus I don't think I catch on to new concepts as quickly as I used to. We'll just have to wait and see what happens, I guess.
Actually, I really don't give a rat's ass because I've always been a little slow so I figure a little more isn't going to hurt too much! It's also fun if I'm in the hospital because the nurses take pity on me and that's always fun. Lol!

The bladder's been behaving very well (knock on wood) and I am sending Dr F regular updates regarding that, so right now, that's more of a "wait and see issue". At lest there's no more visible blood.

I guess the next thing we'll be having a hissy fit over is either the progress of my cancer or hopefully, the lack of it.


Friday, January 29, 2016

Quick Update

I've been trying to get out and walk about a half mile a day for the past few days.
We purchased a pulse oximeter today and the results were somewhat disappointing.

Three weeks out of the hospital, I still can't walk around the block without my O2 level dropping to the low 80s. They want to see it at at least 95%

I'm concerned. Comments?


Thursday, January 28, 2016

Starting To Exercise

Today is the second day in a row that Karen and I have gotten out and walked around our block! Two times around is a tad under 1/2 mile. I did most of it without relying on oxygen. Seems most of the tiredness is from muscle atrophy.

The light bleeding continues but does not appear to be worsening. I sent a note to Dr F this morning but have yet to receive a response. Still seems to be coming from one specific area.

I have been feeling depressed a lot lately, kind of like my "essential energy" or "Qi" is running low.
Maybe that's a normal reaction to this type of stress. I have no idea.

It appears that they want to remove the vena cava filter within three months. I thought that was supposed to be permanent. I guess this is more stuff that got wiped from my memory. *shrugs*

Gonna cut this short again as there's really not too much to talk about. We'll see how tomorrow goes.


         Typical Vena Cava Filter

Monday, January 25, 2016

Here We Go Again!

Just when I was beginning to think we were pretty much out of the woods, the bladder bleed seems to have started again. It became obvious when I finished the first catheterization this morning.
I sent Dr F a text as to what was going on and he said to increase liquids to dilute the urine and keep up the catheterization to prevent any distention. I am getting so tired of this!  :(
This turn of events could lead to another hospitalization. I don't know that I'm really up for that!

Sunday, January 24, 2016

Who's It Gonna Be?

Changing The Tune A little!

Who's it gonna be this year? I really want some responses. This may be a cancer blog but we all need a break now and then. 

Carolina Panthers
Let's hear it!

Denver Broncos

I've really got a dilemma here. These are two of my all time favorites!


Saturday, January 23, 2016

We Overslept Today

We were supposed to get up a little bit early and try to get to the bi-weekly outdoor food market. The wife was ambitious and made the trip but yours truly didn't. Too tired.

Continuing to feel better each day but it's still a long, uphill climb. I did manage to get out for my first walk around the block and guess what, I did it with no oxygen support.

We are going to have to pick up a reasonably priced pulse oximeter to monitor my O2 levels for the next few months, just to be on the safe side.

It appears that most of my weakness is muscular from lying in bed so long. well, we all know what to do about that, don't we? Lol!

Sitting here having a bourbon and man, does it taste good. Later on, spring mix salad and roast beast!

Once again, please don't be shy to say hi once in a while. It makes a person feel less alone, Even my beloved wife and son don't send me comments. I don't know what that means. I'm sorry my children had to move to Italy under bad terms but both me wife and I are always here for them if they should ever want to work things out. I love them both with all my heart but they have to be the ones who want to fix things.

*sips a great deal of booze*

The reason a lot of this is out of order and difficult to follow is that it is not scripted. It is exactly what is going through my mind at the time. That is what makes it different than some diaries or journals. That is also why I don't have a whole lot of readers.

This diary is not just about my experience with prostate cancer but all the other things that make growing old interesting (and sometimes scary).

Well, the cat threw up on our quilt tonight. We,re quite the couple, sleeping on the same futon for nearly twenty years. I'll get up and wash it tomorrow after coffee.

I've got to keep track of all the shit that's gone wrong with me at 62 years old.

Diabetes Mellitus Type II
Possible nerve impingement in lumbar spine
Possible diabetic retinopathy
Cannot take anticoagulants
Urinary incontinence
Fecal incontinence
$3000-$4000 in dental work not covered by insurance
Enlarged heart (reason unknown)
Morbid obesity
Prostate Adenocarcinoma (2012) (not in remission)
Radiation Induced Proctitis
Radiation Induced Cystitis
Atrial Fibrillation (Intermittent
Hospital Acquired Pneumonia
Blood Clots in the Lungs
Bleeding Hemorrhoids
Umbilical Hernias


Friday, January 22, 2016

Feeling Better Tonight

Things are much better tonight as opposed to yesterday which was a disaster. For one thing, I've been officially cleared to enjoy my bourbon...within reason.  :)
My posterior is still an issue, in terms of discomfort. I think it's primarily due to sitting too much.
Still too weak to run around all the time. I keep saying i'm going to start walking around the block but unfortunately,  I still have yet to do it.

*sips bourbon*

I hope all this eventually clears up. I don't feel that I'm done with life yet (too many people to annoy) but soon, regardless of where we're at with this, we have to start addressing the cancer issue. I guess I'm just feeling overwhelmed.
I need somebody to tell me things are going to be OK and I'll probably live to a ripe old age but, so far, that isn't happening.

I feel I'm being punished for the life I've lived, I know that isn't true in reality. I don't care if people think I.m a whiner or a loser. We all have the right to live out our lives the way we feel we should.

I am no exception.

*sips more bourbon*

Do we really all have a purpose in life? Because if we do, I certainly have never found mine. Does that happen often? You go through your whole life without accomplishing a damn thing.

The cancer thing is on my mind pretty much every day now kind of like walking down the street in a big, unfamiliar city not knowing if there's a mugger lurking around the next corner. Unfortunately, with cancer, you can't just turn around and take a different route. Of course, that can get you in trouble too. "Can't win...why try"?  -- Bart Simpson.

I really may have to find a decent support group after all. My wife can't possibly take all the stress and what if something should happen to her? Unless I'm reasonably well, how can I possibly take care of her needs. Who knows, maybe we'll both wind up in a nursing home or a hospice.
We've always said we would prefer to die together.


Tuesday, January 19, 2016

Bad Day

Real bad day today. Probably gonna spend most of the day in bed!

Lots of pain.


A Little Clarification...Again.

Feeling tired tonight. I thought I'd take a moment to reiterate something that I've pointed out before.

I recently received a comment indicating that the way I write is ambiguous and hard to follow.
I'm sure part of the reason Is that I just got out from three weeks in the hospital where  at one point, I  came close to passing on so I may have lost a few brain cells along the way.

As I have stated a number of times before, this is a private diary, not a novel, screenplay or public document.
The only reason it is currently public is to possibly provide relevant information to my family. Some time ago I decided to make it public because I felt that folks in my situation might get some comfort or , at the very least, a laugh
Maybe the reason it seems a little obtuse at times is because it's real and life is frequently obtuse and confusing.
Maybe another reason is that apparently, many people who read this don't take the time to look at the blog as a whole, they just try to read the story.
To actually have any real meaning, one should start at the beginning in 2012 and follow it from there.

Whatever you do, don't be expecting a story line. As I said, this is a D.I.A.R.Y. It is not intended to mimic all those cancer blogs out there. This is more or less a day to day commentary on what I go through on a daily basis.

The latest posts are at the top of the page and you can certainly read it that way but you won't have a clue as to what led up to all this crap.

I am also a registered mentor on YANANOW and to be honest, probably one of the few active ones left. I am pretty much always available to talk by phone or email but I tend to tire easily so conversations may be short yet frequent,'

This diary/blog will continue until my passing makes it difficult (that was a joke) and after that, it will become the property of my family, assuming any of them are still alive.

As an afterthought, I really don't give a rat's ass who reads this stuff. I'm tired of this world and the people in it and so far, nobody I meet gives me any reason to feel otherwise.

I feel sure that my PSA on my next blood draw will have started to rise again so we'll be off on another medical adventure that we can't possibly afford.


Friday, January 15, 2016

Pulmonologist (Lung Doctor) Appointment

I got to see the lung doc today for the first follow-up since the hospital stay. She was very nice and appeared knowledgeable in her field (always a plus.)

Today's chest films appeared somewhat improved since the ones taken in the hospital. She did say that, in general, clinical signs could take weeks to fully disappear.
I asked about the blood clots and their possible impact on my future health. She said she was not concerned at all as they would eventually dissolve. The main goal is to prevent any more from forming, mainly through exercise.

We took a leisurely walk through the maze of corridors that comprised the office and she was pleased that my oxygen saturation actually went up a little bit from when we were sitting in the exam room.

We are going to wait six weeks and have another visit to see how things are going. In the meantime, I'm going to try to get a sleep study done to rule out the possibility of sleep apnea. If I do have it, I may qualify for a CPAP  (Continuous Positive Airway Pressure) machine.
This would improve the quality of my sleep and take a load off my heart and lungs. My wife has been using one for some time and has come to rely on it.

I am planning on resuming our customary work up in Carefree this weekend. It should be a good way to get some gentle exercise and a few bucks to boot.


Tuesday, January 12, 2016

Day Six & Dr F

I saw Dr F, the urologist today for a follow-up after the hospital stay. That went well aside from the fact that his office hadn't quite caught up with my brand new health insurance yet and didn't think he was contracted with the new plan. Fun and games.

He is convinced that the root of the bleeding issue is the radiation cystitis and my tendency to develop a "distended bladder". As I understand it, the bladder tends to become overfull and distended and for some reason, I am unable to detect it as a normal person would. When It becomes that full, the radiation damaged areas get stretched and the tiny vessels in the lining become even more prone to bleeding.
Reuseable Intermittent Male Catheter

We agreed to remove the ever present Foley and replace it with "intermittent self-catheterization". I insert a much smaller catheter every 4 to 6 hours whether I feel a need to go or not. That prevents the chance of overfilling and distention. It's a lot more comfortable than having that big Foley in there 24/7.
The next step is to see if this condition can actually be fixed on any kind of permanent basis.
It's also getting about time for another PSA to see where the star player in this whole thing currently stands.
It's never a good idea to turn your back on your enemy, not even for an instant!

Friday, I see the pulmonologist, Dr A, to find out where we stand with the pneumonia/PE thing.
I won't kid you, it gets pretty depressing when you've got this much going wrong in such a short period of time, especially when you already suffer from clinical depression.
I really do try to remember that there are folks out there who are far worse off than me. I guess it's my selfish side asking..."why me". ;)


Sunday, January 10, 2016

Day Five

I spent most of the day five trying to catch up a little bit on my share of the housework which has been piling up. Not feeling too bad but I still get really tired and short of breath when I exert myself, even a little bit so I usually wind up spending a lot .of time at the "oxygen cafe".
I managed to get 2 loads of laundry and a little bit of vacuuming done. That was more than I expected!

I'm also spending a lot more quality time on the spirometer and I think I'm beginning to see a little improvement, volume-wise. What really  concerns me is that I haven't produced any sputum since this started. As a matter of fact, I rarely even cough.

Been sleeping really late getting up between 10:00 and noon. I'm guessing that probably isn't too good for me but I just don't have any real motivation yet. We'll go over all this stuff with Dr F when I see him on Tuesday. (Seems like every time I see this guy I wind up in surgery again! I hope things go better this time!)

If it's not raining or too cold tomorrow, the wife and I will try 1 or 2 laps around our block. Believe it or not, it's been a long time since I even did that!


Saturday, January 09, 2016

Here's A Game Changer!

The wife and I were reviewing the events of the past three weeks this evening and I found out some more interesting information.
It appears that at least once during the three week hospital stay, I came very close to dying. That was quite an eye opener. It appears that bacterial pneumonia and multiple small to medium size blood clots did a bit of damage to my favorite pair of lungs. Not a good thing!
This would explain why I now have a removeable filter in my Vena Cava. It also explains why I feel like I have mild brain damage. I'm even slower than I was before. Lol!  ;)
Seriously, the wife and I both hope that isn't the case but as a precaution, I won't be taking any IQ tests anytime soon!

I'm gonna have to really get serious about how I treat my body now, especially when it comes to diet and exercise (crap! I went and said the "d" word!) I guess once you've had a PE (Pulmonary Embolism) you remain somewhat at risk for the rest of your life.

It's weird listening to all this stuff that supposedly happened to me because I really only remember bits and pieces of the three week stay.

Well, it's getting pretty close to bedtime, my favorite part of the day!


Trying To Get With The Program on Day Four

It's day four at home. I'm trying to force myself to get up and around more. It's not something I really feel like doing right now. I am still not fully in reality. It's a really weird feeling. This morning, I thought today was Monday.

Going to try to help the wife with some of the housework that's built up over the past three weeks.
She's being a sweetheart, as always but I know she is as overwhelmed as I am.

Having a little breakfast right now and then an attempt to get some laundry and a little general cleaning done.
Have to remember to spend adequate time on the spirometer too. At least 10 inspirations/hour until I see the respiratory people next week.

The biggest annoyance is the perineal discomfort that goes along with the bladder problem. At it's worst, it can make it uncomfortable to sit or stand for any length of time.
I think I'll take some Oxycodone before dinner and see if that helps. I was on 4 mg of morphine every three hours while I was in the hospital but I have now been weaned off of that which, in my case is probably a good thing!  ;)

*sips coffee*

Going back outside now and finish up what I was doing when I decided to take this break.

It's about a half hour later and I,m done with what I was doing outside. Time for an oxygen break!
The damn catheter is getting really annoying today. Hopefully, Dr F will opt to remove it this week. The sooner the better!


Friday, January 08, 2016

Still Not Back Yet

It's the second day home and I still don't feel right. I guess that's to be expected.
This really resembles the after effects of the prostate surgery. I appear to be down to around 265 pounds. Not sure how that happened!

They want me to get in as much activity as I can but that's hard as all I want to do is sleep.
They are concerned about the possibility of more blood clots if I stay too sedentary.
I've got 3 medical appointments next week and it's gonna be real interesting to see how I get through them while toting a portable oxygen bottle!
I'm really gonna try to keep the weight off as much as I can. I guess it's being hooked up to all this tubing that's annoying me the most right now. I can't do any of the stuff I used to do and it feels kinda scary.

I'll continue to update with short posts as I feel up to it.


Thursday, January 07, 2016

It's Good To Be Back At My Desk

It seems to have been an eternity since I last posted anything worthwhile here. I believe the last one was around end of August. I think I was commenting on the urinary bleeding problem that was an issue at the time. Now, three weeks later, I'm back, tethered to a dedicated oxygen line due to a bout with pneumonia. Apparently, this happened due to my level of inactivity (bedridden) for the last few weeks.

Anyway. on September 17th, I was admitted to the hospital for the first surgery on the bleeding issue.
I've been in a hospital bed since then (just came home last night)!
I've been through three surgeries in as many weeks and the last one seems to have corrected the bleeding issue but now it appears that I have a few small blood clots in my lungs (along with pneumonia).

To be honest, the past few weeks seem sort of like a dream. After the second surgery, I really thought I was waking from a prolonged dreamstate and it took me quite a while to acclimate to reality.

I seem to have taken a tour of the entire facility, all the way from ED to the Trauma Center to CCU. I spent some time in intensive care due to an oxygen issue which apparently caused significant concern about the blood clots. They finally wound up inserting a filter into my femoral artery to catch any more clots on the way to the lungs or heart. Unfortunately, I am not a candidate for anticoagulants due to the bladder bleed.

Please forgive the scattered way some of these new posts are. I am not fully back on track as far as reality goes and am just taking day by day.

I'll be posting short updates as things change (hopefully for the better).