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A few answers, still a lot of unknowns, mixed bag

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Posted 3/25/2015 2:26 AM (GMT 0)
Saw VA doctor on Monday.

Good news on kidneys (at least it seems unless I get another phone call)  Ultra Sound picked up a benign tumor, pretty good size, in right kidney.  Waiting for results of final blood work to verify that it truly is benign.

MRI picked up place in eye socket, but they couldn't determine what it is.  On 1-3 month waiting list for VA eye doctor (already been on list 1 month) to give a 2nd opinion.  Depending what he finds, may send me to VA Eye Surgeon, which will entail another long wait.  And this is with me being a Tier 1 Patient with Urgent needs.

CT picked up place in cheek, couldn't determine what it is.  On waiting list to see ENT doctor in Columbia, may do a needle biopsy to see what mass is composed of.  My greatest fear is return of Porocarcinoma, this new growth is less than 2" away from last episode.

Weight loss/total loss of appetite - still don't have a clue or even a good suggestion at this point.

Dizziness, smell hallucinations, weakness, numbing, etc - VA sending me for a full panel consultation with Neurology Department in Columbia - not sure of waiting time on that one.

Brain MRI - showed large area of atrophy - much more advanced for my age then expected, in area of brain controlling memory - hope that's not a bad omen for the future with Alzheimer's.

EEG - Normal

Great that all of this, and tests are free, but progress is painfully slow.  Least scans/tests prove what I have been saying exists.  Losing faith in MRI's, for all they cost, amazed at what they can't pick up or determine clearly.

So no major bad news, some good news, but still a lot of unknowns in there, thus I continue forward.

Ex-boss says when his settlement is settled, he's footing the bill to send met to John Hopkins's for a week for a full blown study of all my issues including the PC.  He's dead serious about this.

All this stuff the past few weeks has left me drained, physically and emotionally.  Honestly tired of fighting evyerthing all of the time, really starting to tax me too much.  There's seems to be no end to it.  By the time these doctor's figure out everything that is wrong, I will probably be dead of something anyway, so it almost seems pointless to keep trying.  Life has become a blur to me the past 6 1/2 years, and its passing me by.  Starting to feel like the invisible man when I am in a crowd or walking around downtown during business days.  Lost all sense of relevancy to the real world.  Doctor's keep telling me to do less, to rest more, etc., but feel I already am doing so little, can't just lie around and do nothing.  And when I do more, I have to pay for it with additional pain and fatigue, so its a two-edged sword.  Don't mind me, mostly muttering to myself at this point.

I am just thankful that many of you, have been treated, have done well, and are able to move on and enjoy your lives for the most part.  Glad to know that some of you are winning this battle, that is a good thing.

Posted 3/25/2015 2:46 AM (GMT 0)
Sorry there is so much waiting at the VA. Too bad you couldn't go to Walter Reed or somewhere the big mucky mucks go, and get a good work up.

How old are you? Do you have Medicare?
Posted 3/25/2015 2:49 AM (GMT 0)
David - good you got some answers.

That is a very generous offer by your ex-boss. Hope that works out.

What you're going through is very difficult. Rest as you can.

As always, you're in my prayers,
Andrew
Posted 3/25/2015 2:52 AM (GMT 0)
Still thinking about and praying for you, Brother Man! Glad to hear there is no major bad news, sorry they have not been more help to you so far.
Bill in MS
Posted 3/25/2015 2:56 AM (GMT 0)
Oh, David...I'm so very sorry for your exasperation, which is totally "earned".  Please feel free to "mutter away".  We're always listening and here to offer support.  On some level, I relate to your issues with doctors, tests and appointments...utterly exhausting when we already feel worthless.  It just seems common sense that URGENT shoud be applied to patients as well as packages=(

From my perspective, which is vastly different, yet much the same...I can't say that my struggle is at all worth it.  I am tired @ 53.  I too am weary.  I asked God last summer "How much worse can I get?"  HE showed me, with SHINGLES in my eye.  YAY ME...Shingles are the cherry on top of a shart sundae.

"We" can't give up...although...my uniform is tattered, my bugle is rusty, and my white horse is limping.  I have a dark sense of humor, so I wonder...Do I shoot my horse first, then hide inside his carcass?  Will my annoying extended family still find me?  Probably so.

These days, weeks, months have been traumatic for you and your wife.  I sincerely hope that you can get some rest. Meanwhile, please KNOW that you are in no way "invisible".  You are a light to many who follow your journey and an inspiration to ME.

On a lighter note...The Easter Bunny is just around the corner.  That's a great excuse for a CANDY BINGE!  Chocolate, chocolate, chocolate...My husband creates the grandest Easter Buckets for me because I'm just a "big ole kid".  I went nuts for chocolate covered JELLY BEANS by Brach's last year.  They were a new item that sold out quickly.  We went on Ebay last Easter and paid astronomical prices for additional bags!  I've contacted the company this year...They're not making them this year.  BOOHOO.  It's those little bits of HAPPY that get us through.  I'm sorry your appetite is MIA.  Perhaps the sugar would jump start it?

Hugs~~Dixie

 

Posted 3/25/2015 3:35 AM (GMT 0)
So very sorry this is taxing on you, really hope you can get seen very soon by the specialists, will hope that for you...At least you have some answers, maybe once you get that kidney tumor taken care of you'll be able to gain weight again...prayers, well wishes and my fingers are crossed that your file can be pushed forward in the VA...
Prayers...
Posted 3/25/2015 6:24 AM (GMT 0)
David and Dixie,
I am always amazed at how people get so excited by stupid incidents that mean nothing when so many are remaining positive in the face of overwhelming adversity. Keep on being that inspiration! If that's all you can manage on bad days, you are ahead of many self absorbed folks in our society and you are not at all worthless!!!
If you haven't tried the chocolate covered gummy bears, they might be a somewhat disappointing substitute for the jelly beans.
Happy Easter!
Beth
Posted 3/25/2015 1:35 PM (GMT 0)
David,
I simply wish you all the best and you are in my prayers. I can't imagine the many challenges you have to deal with. You are a great inspiration to me and I'm sure others. I think a testament to your inspiration is your ex-boss' willingness to assist. I hope that settlement comes soon.

Brent
Posted 3/25/2015 1:57 PM (GMT 0)
Good Morning David,
With so much time between appointments, maybe you could start work on another book? Even if your too tired to write, you could put your mind into developing the story, and record your thoughts. Writing also might let you vent some of your frustrations.

Kerry
Posted 3/25/2015 3:19 PM (GMT 0)
David -

"Starting to feel like the invisible man..."

Not HERE you're not! (To echo others!)

How about Beachbum50's idea about doing some more writing? I can see that going either way for you. Doing so might serve as a good distraction for you, but of course it might also become too physically demanding. You'll make the right call of that one.

In the meantime, ongoing prayers for you!
Posted 3/25/2015 3:19 PM (GMT 0)
1-3 months to see an eye doctor.....this seems inexcusable to me. That's even slow for the VA.
Posted 3/25/2015 3:54 PM (GMT 0)
And where is the oncologist in all of this? And how about the special blood work and urine tests that were done...where's your creatinine level at this stage? Weren't the doctors checking for some type of protein and sugar as well...what happened with all that?

Sorry but something is not adding up here.
Posted 3/25/2015 11:34 PM (GMT 0)
You are never invisible your one of the best friends I have on here, your advise is always great and I care a lot about you and hope today and each day that your doing better..I really wish I could help you out better. Please keep posting.
Many prayers...
Posted 3/26/2015 1:17 AM (GMT 0)
casper, that is with me being Tier 1 of 7 tiers, and being marked URGENT. But it is free....

Not sure why I am no longer writing books, I honestly have several written fully in my head, wish I could just transfer from brain to computer without all the typing part.

Plus in the years (over 6) that I have no longer been able to work in the normal sense, I still feel a burden of guilt, so I make up for it by staying busy all the time - I do all the housework, laundry, shopping, etc. for starters, and with endless medical appointments/tests, plus the "free" consulting work I do for my ex-boss on the big legal case, I honestly don't have much time to get bored. Writing takes up a lot of time, even with my fast typing skills, so it have to be late in the evenings. While I stay up late every night, it doesn't mean I am fully alert, takes a lot of serious concentration to write serious stuff.

Just hard to explain, I never wanted to retire, wasn't even a thought in the back of my mind. I loved what I did for a living, liked being on the edge in the biz world I was involved with. That's what I mean about feeling relevant, or not feeling relevant. Use to make multi-million dollar a day decisions on a regular basis, use to work with 15 or more foreign currencies daily, all kinds of challenging things, sometimes being the #2 or #3 guy in large manufacturing plants. Then just like that, I was down and out before I knew what was happening.

Thankful for my disability and VA, but its not the same as working. Sure, I am entitled to it for my long work record with SS, and for my military service during Viet-Nam, but just doesn't feel the same to me. I would rather be healthy and working 50 hours a week, then what I was left with. Hope that would make sense to some.

Don't mean this in any sense of a sexist way, but even in my generation and age, men were defined by what they did for a living, I am/was no different.
Posted 3/26/2015 1:23 AM (GMT 0)
David,

I remember your answering my questions when I first got here. I had NO IDEA of all that you went through and are still going through. You gave me a ton of hope and it seems that you are totally correct in your assessment that I would have no issue with a cure. While it is still something I think about (and worry about when PSA test are done) but I am going on with my life.

I would LOVE to give back to you everything you gave me, but I don't know what to say. I am glad that the VA is having at you and that you have such a cool boss!!! Everyone here listens to you and your wisdom. You have every right to vent here and we all listen and pray for you. Keep in mind that you are loved here and are here to hold your virtual hand.

Don
_______________________________________________
Age 61 @ DX, 62 Now
DRE: enlarged w/"ridge"
Pre-Op PSA: 6.8
Biopsy: 5 of 14 positive, 12%(3+3),11%(3+3),20%(4+3),5%(3+3),4%(3+3)
da Vinci: 10/17/2014 Both Nerves Spared
Cath: 17 days
Post-Op Path:
Histologic Type: Adenocarcinoma
77gr - 4.5cm x 4.7cm X 4.2cm - 10-20% Involved by tumor
Largest module: 1.6cm Bilateral Lobes
Gleason Grade: 3+3=6 (down from a 4+3=7 in biopsy)
TNM Staging: pT2c pN0 cM0
EPE: Absent, SMI: Absent
Margins: uninvolved, Lymph Nodes all benign
Bladder Neck Negative for Carcinoma
Perineural Invasion - present, Vascular Invasion - present
PSAs: (Roche ECLIA methodology):
01/22/15 - <0.1 (Three Month test)
Posted 3/26/2015 1:42 AM (GMT 0)
David,

You and I are both Vietnam boots on the ground sailors. I wish there was something I could do for you as a shipmate, even though your "ship" was a VP squadron, and mine was a surveillance center. I'm not the praying type, so I can't pray for you, but I do wish you the very best with all you have gone through and all that you must put up with physically and emotionally.

Jim
Posted 3/26/2015 2:16 AM (GMT 0)
Perg: Take your boss's offer and run with it until you get all the answers you are more than entitled to. Prayers coming, non stop.
Posted 3/26/2015 2:32 AM (GMT 0)
My wish is for you to have strength. Life has certainly thrown you quite a few curve balls. More than you need. Time for you to stand at bat and let the Docs walk you in. Sorry for the baseball metaphor. I guess what I saying is that I really feel for you. So exhausting, physically and emotionally. Wish I could take some of it on for you. TAke care.
Posted 3/26/2015 2:46 AM (GMT 0)
David, nothing i can say, except please keep fighting and inspiring everyone here, as you have done every day, since I've been on this forum.
I remember when i first came here and you were dealing with your wife's issues, i think back surery and recovery? And you were so focused on her, despite your issues. And since then you have had one thing after another come at you, and you've handled it all with grace and bravery.
I truly hope you find some peace.
Posted 3/26/2015 7:01 AM (GMT 0)
Hi David, what all those tests cannot see is your determination to reach out to people and battle this thing. But it´s there, and all of us can atest to that.

I do believe there is strength left in you, and that you will get your answers, but seems it will be a long one. If it was something that is obvious, they would have discovered it by now. So, it is more tricky. That is bad news, but also good news. There is nothing so obvious wrong that it jumps out. You can take that and hold onto it, and try to live your life accordingly. People say that growth lies outside of your comfort zone. Try something different. The same-old does not suit you anymore.
Posted 3/26/2015 3:58 PM (GMT 0)
Thank you, for all your kind remarks and comments. They are appreciated.
Posted 3/26/2015 7:36 PM (GMT 0)
Still praying for you.

Hang in there my friend,
Andrew
Posted 3/26/2015 10:27 PM (GMT 0)
Hang in there friend.
One step at a time...

Edited due to Rule #6. Trust you understand. Jim

Post Edited By Moderator (Tudpock18) : 3/27/2015 2:20:32 PM (GMT-6)

Posted 3/27/2015 1:27 PM (GMT 0)
Keeping you in my prayers, as well...
Posted 3/27/2015 3:57 PM (GMT 0)
Thanks, since I last checked in
----------------------------------

Got final results of kidney issue, appears to be a large but benign tumor. Said they will monitor it over time, and it may still involve surgery if it continues to grow and block the kidney. Said even a benign growth can cause problems and be a steady source of pain. I have been tender in that area for about 2 years now, not a deep pain, but a low steady pain, hurts to touch, even my own fingers.

They called with ENT appointment today, not until mid June!! That's with me being marked Urgent. He said that after 2 weeks, I can call, and see if they can be forced to let me see a local ENT, since they cant fit me in soon enough to satisfy what my doctor wanted, and what I wanted. Will see how that system works 2 weeks from now.

Yesterday, horrible day. Foul mood and in lots of pain/fatigue from moment I woke up. Spent hours in bed, very unusual. Anytime I was up, having back to back dizzy spells and "smell" events. Don't like it, don't like the progress of things. But it is what it is.
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