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Wednesday, May 25, 2016

Going For A Second & Third Opinion Before Surgery

Dear Diary,

Just got back from my first walk around the block in quite awhile. It was 100% better than the previous one a few weeks ago.
In the previous one, I had to go very slowly and stop every 20 or 30 yards or so to catch my breath and allow the oxygen levels to normalize. This time, I only stopped once for a minute or two and did not desaturate below 85. Normal is 95+. I used to desat to the low 70s and that was on oxygen!
It appears that something is improving. We're just not quite sure what it is and whether it is stable.

As far as the heart surgery goes, we are going to seek out a second and third opinion. This may take a while but I think it would be definitely worth it.
The latest opinions have been basically that, with my many comorbidities I probably would not survive the surgery.
One of the things that I really need to find out is what happens if we just do nothing. In other words, what are the odds of something happening if we don't take the tumor out.
There's so much complexity involved in this situation that Karen and my head is literally spinning. And there's no agreement among the experts.
We have, at the very least, another tool two two and a half months get this stuff done and get a handle on what we're really going to do. I have just resumed my warfarin regimen and that's probably going to  require two weeks added on to the time Dr H, the cardiovascular surgeon wanted to wait to see if this thing would disappear if we upped the warfarin dose.
The main problem of experimenting with that is the possibility of developing another bladder bleed.
That wasn't particularly serious before because I wasn't on any kind of anticoagulant. If it happens again it could theoretically be life threatening.

Rest assured, that I fully intend to battle these medical issues with every resource I have available. I honestly think that sixty-three years old is a little young to die.
Translation of above: I intend to prevail.

* Takes nice long sip of bourbon*

In the meantime, we've really got to get a handle on this stupid cancer and losing my brand new urologist certainly hasn't helped.
I have sent him an email asking him if I should be pursuing another urologist or a medical oncologist at this point.
I have a prospective urologist that is with my medical group and we're looking at him seriously if Dr F recommends him.
I have absolutely no idea what my PSA values are right now but I'm sure they are not good. Last check was 0.8 and rising. We've really got to start taking this someone seriously and get me on some kind of regimen, probably hormones, before this thing decides to spread if it hasn't already.
If I do die, I wish I had the ability to have my body plasticized. That is SO cool. You wind up on display virtually forever and you don't even smell. Lol!

By the way, I've said this before but let it be known that comments are always welcome on this blog.
They really help to relieve the depression and loneliness that goes along with this.
I really want people to know that I don't write this just trying to get 15 minutes of fame. That's definitely not going to happen! I'm just trying to share with people what it's really like to have a whole shitload of problems, and half of them probably won't ever be resolved in my lifetime.

* Takes nice long sip of bourbon*

I guess being tied 24/7 tubes and tanks and other medical equipment is just starting to take its toll a little bit.
I'm going to be looking into a different oxygen set up, it's a small pack that you were basically on your back. Right now, I have to be hooked up to these tanks that are relatively heavy and about 3 feet tall.
Good thing about them is if they're full, they give me about two and a half hours to go about my business.

* Takes ANOTHER nice long sip of bourbon*

Man, I really wish I had some good weed right now. I'm sure that would just be the perfect thing for my lungs, but it woulf help with getting my head in a different place.

Tomorrow, I have my high resolution cardiac MRI. I have no idea what they're going to discover on that but as usual you'll be the first to know.


Tuesday, May 24, 2016

A Little Bit Of Good News For A Change!

Dear Diary,

Little bit of good news tonight for a change. I went in for the needle biopsy as scheduled and the preliminary CAT scan shows the nodule or whatever it is is decreasing in size,therefore there was no need to do a lung biopsy.The radiologist who did the scan said that it didn't appear to be any kind of cancer.
We will recheck with another CAT scan in about 3 months to see if there any changes. 
At least this new report seems to take a little stress off of both of us for a little while.

The next issue on the agenda will occur on Thursday. This will be a high contrast MRI of the heart.
This procedure will be done at the same facility as the proposed biopsy. Karen and I are hoping beyond hope that a positive change has occurred and maybe I won't need open heart surgery after all. 

If I do end up having heart surgery we will be posting the hospital room, the number and all relevant This assumes that I survive the surgery. In the unfortunate circumstance that I don't, my wife Karen will need all the support and love that you can possibly give her.
This woman has given the better part of her life to me without question. She is working very hard to make my life better and I am not helping. 
If, upon my passing, she is hurt, exploited in any way or abused in any way, let it be known that I have made provisions for this.

All who are interested are more than welcome to contact me.


Sunday, May 22, 2016

Finally Got Dates, Times And Authorizations For Procedures

Dear Diary,

 This entry should actually been posted Friday or Saturday night.
We actually have confirmed appointments and dates for the next to adventures in the hospital. 
I go tomorrow, the 23rd, for a needle biopsy on my lung, then on Thursday, I go in for a high contrast MRI on my heart. I hope this will give my cardiologist a little bit of information as to whether I'm really going to need heart surgery.

We've been waiting for this for quite a while now. I hope like hell it's good news. Wish me luck,  will you?


Friday, May 13, 2016

Bad Dream

Dear Diary,

 I feel like I'm living a bizarre bad dream. It seems like there's no real solution here.
I have at least 7 major health issues and they all seem to complicate each other. It's sort of a closed loop. Of course, the more conditions I develop, the worse candidate I am for surgery!
Come on, guys, this is 2016, not 1816! Where's all the brilliant, new technology when you need it?

Lately, it feels like Karen and I just spend each day waiting for the other shoe to drop. I spend an inordinate amount of time worrying about what will happen to her if something should happen to me. All our relatives are on the east coast and our circle of friends here in Phoenix is very small.

It is certain that I will require the heart surgery, sooner or later but we're going to have a hell of a balancing act to pull off if I am to qualify as a surgical candidate.
All I want is to get through this nightmare safely and be typing these entries from my hospital bed.
Weird, huh?

The biggest question I have is if the lung nodule turns out to be malignant and has to be surgically removed, can it be combined with the heart surgery. There seem to be a lot of differing opinions regarding that. I'm not at all sure that I'm healthy enough to survive one surgery let alone two.

Well, I'm gonna post again when we finally have a confirmed appointment for the biopsy. Not really that much to talk about until then.


Tuesday, May 10, 2016

Look Ma, No Fluid

Dear Diary,

I went in for the thoracentesis today. Today is Monday. Miracle of miracles, they didn't find any fluid to drain.
That was the good news, the bad news is now I have to go in for a biopsy of the 2.1 centimeter nodule in my left lower lobe. 
I know it makes no sense, but I'm just simply making the assumption that this is going to be malignant. Fact of the matter is, I've had very little good luck with any of the parts of the illness I've had for 4 or 5 months now. I really have no reason to believe this is going to be any different.
I was actually silly enough to believe that I might be able to hang in there to be a really old grandpa. Apparently, this is not going to be the case.

I'm tired, tired of trying to keep up with this process. My resiliency is very low lately. This is probably going to come as very bad news for my son.
My plan is to try to hang in as long as I can, with the resources I have.
Am I drinking while I'm writing this? You're god damn right I am!

It's Tuesday afternoon now and Karen and I are still feeling overwhelmed. To add to the mess, it appears that my new urologist, Dr F, no longer takes my insurance! We just went through this last year when I lost Dr K.
I can't just keep skipping from one doc to another doc to another doc. It's not a good practice from any point of view.
I just left a message with my GP asking for a new urologist. Maybe we can find a good one within his group.

I'm now waiting for a call from the hospital to set up an appointment for my lung biopsy. After that, I will have a high contrast cardiac MRI to hopefully get a better look at whatever that is in my heart.

Life is good!  :(


Friday, May 06, 2016

Significant Improvement In Respiratory Issue Today

Dear Diary,

It's Saturday night here in Phoenix. I'm posting for Friday night AKA yesterday.
It appears there's been a significant Improvement in the respiratory condition over the past two days. I have no ready explanation for this other than that I've been on the CPAP for 3 days now.
All I know for sure is that during exertion, I desaturate significantly less then I did a few days ago.
I'm planning on discussing this with the pulmonologists when I see them Monday afternoon.
Over the night time use of the CPAP, the only other change might possibly be due to the iron supplementation for the anemia. I really have no clue what's doing this. I'm just hoping it's a permanent change!

As I mentioned in my last post, I really like my new CPAP. If anyone reading this use a CPAP as well maybe we can start the CPAP Wars!
My CPAP is bigger and better than yours. My CPAP can kill your CPAP and your IPAP!
When you get to this stage in the game, you really need to have a sense of humor.

It's kind of unusual for me but I'm actually really dreading the potential thoracentesis on Monday. I just hope they know what the hell they're doing.
I've had biopsies before, but there's something different about having a 7 or 8 inch needle shoved into your chest that's kind of disconcerting.
I'll get through it all right of course. I'm just hoping this isn't a secondary cancer. That's going to be really, really rough to handle.

I did wind up getting an answer to how I'm going to get a complete physical evaluation for potential surgery.
It appears that the evaluation will be done by my GP, and he will release a report containing any pertinent information to my surgeons well before any surgery takes place.
I guess I'm fairly comfortable with that.

* sips on a glass of bourbon*

We backed the warfarin off the middle of last week. Looks like it's under control for Monday.
I had some rectal bleeding today from the usual hemorroids. It seems to have thrombosed quickly, so that doesn't seem to be a problem.

Along with all the other updates, I am supposed to be having a cardiac MRI within the next few weeks.
We had a hell of a time finding any place that will do it.
The results of the MRI should shed some light on whatever this object is in my right atria.
If I'm unbelievably lucky, the object in question will have disappeared, which will allow me to avoid cardiac surgery, at least for now.

Lastly, I want to thank all those who have had the generosity to help us out with the massive bills that we're generating.
Anything, even a dollar helps.


Thursday, May 05, 2016

General Update

Dear Diary,

Love my CPAP! I sleep so much better. Everybody should have one.  :)

Got my INR today. Came back at 2.4 which is right where Dr M, the cardiologist, wants it but a little lower than Dr H, the cardiothoracic surgeon wants it.
The two of them do not agree. All I know is it took around 7 or 8 hours for the stupid finger stick to stop bleeding! Normal for me is 15 to 30 seconds.

The pulmonologist called this afternoon and we are now set up to attempt a thoracentesis this Monday.  This also may include a biopsy of the nodular density on the lower left lobe.
The way my luck has been going lately, it will probably turn out to be lung cancer.  :(

I am definitely going to get a complete evaluation of my present physical condition in regards to being a viable candidate for major surgery. It is questionable whether, with all my comorbidities taken into consideration, that I could survive a major operation. I just have too damn many things wrong with me now. I really need exercise to regain my strength and endurance but I can't even do that.

I keep asking myself why I'm not more concerned about possibly dying from this. Why am I not more afraid? I have no idea to be perfectly honest.
If I have to go, I just want to go painlessly. Is that too much to ask from the universe?
As an atheist, I have no expectations of any kind of an afterlife, good or bad. In fact, I really hope there isn't one. I'm too tired to live for eternity! Lol!

If this post sounds somewhat disjointed, it is due to the fact that I am definitely getting mentally foggier as time goes on. It is obvious, at least to me, that something very serious happened to me when I had the respiratory crises in the hospital. It's very disconcerting to not have any real memory of the events that occurred at that time. I have to rely on my wife to reconstruct the time line every time we repeat it to someone.

That's it. Have a nice day!  :)


Wednesday, May 04, 2016

Brand New CPAP

Dear Diary,

At long last, we just took possession of my new CPAP. This is a really good thing for me.
When I sleep at night, I tend to experience varying degrees of sleep apnea.
The new machine will keep my airway pressurized if I'm not breathing well. It also has an O2 bleed in to help ensure that I wake up in the morning.

No word yet from the gods of modern medicine as to what our next move will be. I'm starting to believe my general health is about as fucked as the 2016 election.

I go in for my weekly INR tomorrow morning so maybe I'll have some news then.


Monday, May 02, 2016

Heart Surgery Postponed For Two Months

Dear Diary,

Once again, things have taken another change. Dr H, the heart surgeon wants to wait a minimum of 2 months after increasing my warfarin dose to see if the area of interest in my right atria diminishes in size. If it does, it is a clot as opposed to a tumor and I wouldn't need cardiac surgery after all.
He is uncomfortable with open heart in my case due to all my comorbidities. Seems we all agree that it would be best if I waked up from the surgery.
This is at odds with my cardiologist. I don't know who trumps who anymore!

That being said, the pulmonary people just called. It would seem that I now have more fluid at the base of the left lobe as well as a "suspicious nodule" in the same area.
They now want to do a thoracentesis to remove the fluid and biopsy the nodule at the same time.
This will play havoc with the warfarin, especially since we just upped the dose.
I need a break. I need some good news for a change.

It occurred to me earlier tonight regarding the comorbidities that if they don't dare do heart surgery on me they're very unlikely to do any other surgery if I should need it. This could theoretically include chemotherapy, it could include radiation therapy or anything other therapies that can stress my body.
That does not bode well at all for the future and I'm in the middle of contemplating how much that actually bothers me, if at all.
After all, I have gotten a minimum of 63 years out of an expected 72. I guess no matter how young or how old you are you're never really ready to go. It's a good lesson in life.

The rest of the week should be quite interesting regarding healthcare as the medical powers-that-be battle it out over who trumps whom.
The one thing that everybody does agree on is that my case is highly unusual, and medically interesting.
I guess this is truly my 15 minutes of fame. Lol!