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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25448
Posted 4/15/2015 5:21 PM (GMT -8)
Still alive and kicking.

Had the first fitting for my dentures a few weeks back, good news.  Bad news, instead of getting "teeth" by May, as told over 6 months ago, the VA oral surgeon wants another 3 months of healing time for my gums and jaw bones, bad news.  The VA dentist in Greenville that I saw, read from the surgeon's notes, and he stated that my case was a 1 out of 1,000 case.  In his 40 plus years of practice, said it was the worse radiation damage he had ever seen.  He wants to proceed with extreme caution.

Due to high risk of secondary cancer from the radiation, especially, he noted, brain cancers, he is ordering full 360 dental x-ray's every 6 months and a full brain MRI every year from this point on.

Will be seeing the ENT doctor real soon about the lump in my cheek, still waiting for appointment with the eye doctor to give second opinion on lump in eye socket.  Nothing more can be done to speed it up via the VA.

No change on weight issue.  After stabilizing for a couple of weeks, back on the downward slide again.  No one has an answer at this point.  Got them all baffled.  When I have recently tried forced calories, all it does is increase the "burn" rate.  Seems like everything in my body works with reverse logic.

Still faithfully going to PT, been there for 4 years now, a record at that facility.  No forward progress ever, but they still feel they are helping me from slipping back even more.  I agree.  My doctors agree.  This week, fatigue was so extreme, could barely finish 1/2 of my normal limited routine.  But I do the best I can.

Hope everyone is doing well.  When I get a chance, will spend a little time reading some of the more recent posts, to give a word of encouragement to those in need, or advice, if any of my limited knowledge is still useful.

Saw where someone was implying a contradiction in test results on my kidneys.  I agree it seems that way.  VA doctor's explanation was the vast difference one can get going to different scan centers and using different machines.  Their scan didn't show the same stuff the 3-D one had previously.  Seems odd to me, hard to know which one to believe (as the patient - me).

My oncologist refuses to accept scans from the local hospital I live next to, as he said even their basic x-ray's are inferior quality.

Will check back when there's something useful to post.  Just hanging in there.

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InTheShop
Elite Member
Joined : Jan 2012
Posts : 11468
Posted 4/15/2015 5:32 PM (GMT -8)
Hang in there.

Still praying for you.
Andrew
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logoslidat
Veteran Member
Joined : Sep 2009
Posts : 7585
Posted 4/15/2015 5:33 PM (GMT -8)
I was wondering where you where you have been, Purgatory…Soldier on… Have or do you do much reading when you can? I find much comfort in reading from the irritants of life. Obviously you have more than irritants, but perhaps some salve could be found …...
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Octorobo
Regular Member
Joined : May 2009
Posts : 437
Posted 4/15/2015 6:51 PM (GMT -8)
David
Glad you posted tonight
Have been worried about you
david in Texas
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browntrout
Veteran Member
Joined : Apr 2014
Posts : 683
Posted 4/15/2015 7:36 PM (GMT -8)
Pergayory: Always hope to see a glimmer of good in your Posts. Each time I read your posts I admire your courage and conviction even more.

Prayers non stop.
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celebrate life
Veteran Member
Joined : Dec 2014
Posts : 2111
Posted 4/15/2015 8:57 PM (GMT -8)
David,
It is good to have an update on your many and frustrating ails. Always good to see you are peeking in on the forum, even when you don't have any new news. If good vibes from all of us counts for anything, things should soon be looking up, cause you know there are lots of us here that are thinkin about you and wishing you the very best every day!
Beth n Gary
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Barbara Lee
Veteran Member
Joined : Sep 2003
Posts : 2889
Posted 4/15/2015 9:16 PM (GMT -8)
David:

So glad to see your post. I emailed you several weeks ago and didn't hear back from you. I was beginning to worry that something very serious had happened and there was no way to find that out. I know that I've been MIA for sometime. I was so sick in March, as you know.

My broken pelvis/hip aren't healing and I'm in still the exact amount of pain I was in when I went into the hospital on March 2nd. I'll see the orthopedic Dr that operated on my foot last summer. Now mind you, he's an ankle and foot guy, but still and orthopedic Dr, right?

It's a real bummer that you'll have to wait another 3 months, that really stinks. All I can say to that is I'm so sorry and just keep hanging in there David. I truly know what it's like to just hang on and wish it would all go away.

Hate to hear that you're still having issues with your weight. Wish I had some magic solution for you, I know I lost 15lbs while in the hospital. I normally gain the weight back. I haven't this time though. I'm not eating a lot anymore as I'm feeling just way to rough. I try to eat an avocado daily, if you like those that's a great. They are a very good source of vitamins and fat. I also, have a lot of pears, and oatmeal with toast. Just a thought in case you might be tempted by the suggestion.

Well I'd better go I have a very early morning appointment at Walter Reed. Hubby is taking me as he feels with my fractured hip/pelvis I'm not ready to take myself yet David you remember our agreement, we're pain buddies and we there for each other no matter what.

Please drop me email and we'll catch up more okay. You're in my daily prayers and I'm pulling for good news for you really soon. I know I how you're feeling, hang tough okay.

Hugs,
Barbara
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Dreamerboy
Veteran Member
Joined : Jul 2011
Posts : 601
Posted 4/16/2015 8:19 AM (GMT -8)
Purgatory - You are a true warrior against this disease and set an example for the rest of us. All the best.
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Ed C. (Old67)
Veteran Member
Joined : Jan 2009
Posts : 2543
Posted 4/16/2015 2:58 PM (GMT -8)
David, whenever I check in, which isn't very often anymore, I look to see if you have an update. Keep up the fight against all what you have to deal with. I wish you the best.
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Chartreux
Veteran Member
Joined : Aug 2006
Posts : 9664
Posted 4/16/2015 5:40 PM (GMT -8)
So very glad you posted. I was getting very worried about you. I continue my prayers for you...Sure hope you get teeth soon...My husband has his teeth (all false) and the fitting has been hard on us as he goes in every two weeks because they just don't fit him good...its been a very bad nightmare for him, so I really hope you get an excellent fit on yours...you'll need efferdent, dial soap (yellow) to clean with so maybe stock those...liquid dial soap (orginal yellow)
Prayers to you my friend.
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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25448
Posted 4/16/2015 8:07 PM (GMT -8)
thank you, one and all, who took the time to read this update, and to post your sentiments. appreciated.
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Aimzee
Veteran Member
Joined : May 2010
Posts : 1413
Posted 4/17/2015 4:40 AM (GMT -8)
I'm here too, David. You are always in our thoughts and prayers. I hope it won't be long until you get your teeth. I hope you can maintain your weight and not lose anymore. A lot of people care about you, dear friend!

Hugs,
Aimzee & Ron
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worriedabouthubby
Regular Member
Joined : Aug 2012
Posts : 358
Posted 4/17/2015 6:47 PM (GMT -8)
Hi David! Glad you felt like doing an update for us. I know the delay for your dentures is frustrating, but better to get it right than suffer more with sore gums, unhealed spots, or poorly fitting teeth. I continue to pray that your doctors will get on the ball and really work to determine what is going on with your weight loss and balance issues, as well as with those tumors. I pray for you and your wife, too.

I went to Duke Medical for my asthma. On the drive home, hubby said " I've always know you were a unique woman, but I didn't know you were unique enough to confound the director of pulmonology at Duke Unv. Medical!". In other words, I still don't know what is wrong, either. They are supposed to schedule another , more in depth bronchoscopy. Waiting to get the call...... you know the drill.

Stay positive.
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BillyBob@388
Veteran Member
Joined : Mar 2014
Posts : 4855
Posted 4/18/2015 12:13 PM (GMT -8)
Thx for your updates, David!

Purg:"Due to high risk of secondary cancer from the radiation, especially, he noted, brain cancers, he is ordering full 360 dental x-ray's every 6 months and a full brain MRI every year from this point on......"

I'm sure it's some pro vs con thing concerning matters over my head. However, due to the high risk of secondary cancer from the radiation, what they do is ramp up the total dose of future radiation? Well, I guess not from the MRI, but all those x-rays? OTOH, I realize they must keep a close eye on things.

Purg:"No change on weight issue. After stabilizing for a couple of weeks, back on the downward slide again. No one has an answer at this point. Got them all baffled. When I have recently tried forced calories, all it does is increase the "burn" rate. Seems like everything in my body works with reverse logic."

Me too, baffled that is.
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Phenom
Veteran Member
Joined : Dec 2011
Posts : 615
Posted 4/18/2015 1:55 PM (GMT -8)
Thanks for the post, David, it's always good to hear from you even when the news isn't great. Keep kickin'!
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DianeB
Veteran Member
Joined : May 2013
Posts : 1355
Posted 4/18/2015 2:17 PM (GMT -8)
David

Keeping you in my prayers..
Rootin' for you !

Like others have remarked, i 'm not on here often but I always track you & Barbara down for updates... which too often remind me of dealing with
(lying, each- man- for him/herself) politicians, car dealers, etc. Fill in the profession- of- your choice.. I have personally known a wonderful, caring car salesman !

Though I DO wonder how much 'the system', not the doctors themselves, is responsible for the stonewalling.

Glad you are continuing with therapy !! .. must take all the energy you can to muster up all it takes to go.
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Galileo
Veteran Member
Joined : Nov 2008
Posts : 701
Posted 4/18/2015 5:58 PM (GMT -8)
David, I follow your journey and hope it helps you to know that people are interested and care about your welfare.
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tdnjam
Veteran Member
Joined : Jan 2013
Posts : 586
Posted 4/19/2015 3:21 AM (GMT -8)
David,

So glad to hear from you.  You continue to be in my thoughts and prayers.  I just keep hoping good news comes your way.

Jim

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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25448
Posted 4/20/2015 4:12 PM (GMT -8)
Thanks to each of you.
------------------------

Monday, was at VA today. Today, they spent an hour making a total of 3 more impressions for my teeth. They didn't like the first one for the uppers, so they scratched it, and started all over again. After some adjustments, they proceeded to make the lowers.

Was told again, it would be more than likely, that I will not have the finished product until the first week of August, still a long time away. But I have made it 6 months so far without teeth, starting to get use to that part.

And as a good news item. Was paying someone to grind a stump away (actually several) in my front yard, where my yard man is building a raised mulched area surrounded by retaining wall blocks. The stump guy refused to take any money for his work, because I was wearing my Navy Viet-Nam vet hat (usually always wear it when it go to the VA), and said he couldn't charge a veteran for his services. I insisted back, but he wouldn't take a dime, and thanked me for my service. Totally unexpected, but totally appreciated. Sometimes, however rare, there are nice people out there
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clocknut
Veteran Member
Joined : Sep 2010
Posts : 2890
Posted 4/20/2015 4:22 PM (GMT -8)
David, it's great to see a good news item in your post. In fact, I detect a more positive tone in this latest post than I've seen in some time, and I hope that's a good sign. You're way overdue for some good breaks.
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Aimzee
Veteran Member
Joined : May 2010
Posts : 1413
Posted 5/4/2015 8:30 PM (GMT -8)
Hello friends ~ has anyone seen David? I had to go back quite a bit to find a Purgatory post. I am quite concerned and hope to hear some news later today. God bless you all! confused
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pasayten
Veteran Member
Joined : Mar 2007
Posts : 539
Posted 5/5/2015 5:27 AM (GMT -8)

Aimzee said...
Hello friends ~ has anyone seen David? I had to go back quite a bit to find a Purgatory post.

www.healingwell.com/community/default.aspx?f=35&m=3398177
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