Fresh Update: 08-26-14 (re-updated 8-28 Thursday evening)

David,

Thanks for the update. I hear your frustration. Take care and hang in there.

Tim

Purgatory: Have you considered hypnosis? Just thinking auto suggestion to encourage a bit of appetite.

With the VA under the microscope in recent months, it's appalling how they've let you stew all these months. Shameful!

I think you've said in the past that you're a Roman Catholic. If I haven't mentioned it before, you might find a really good read in Cardinal Joseph Bernardin's little book, "A Gift of Peace." Bernardin was the Archbishop of Chicago and died of pancreatic cancer. I've found it to be of enormous comfort.

Thanks, guys, and gals. Clock, yes, a devout Catholic-convert. Will check out that book your mentioned. Brown - no, won't do hypnosis, don't believe in it, use to do consulting work for one of those "doctors", and he turned me completely off of it. But thanks for the suggestion.
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UPDATE: WEDNESDAY EVENING.

Weight officially down to 138.

PCP said x-rays and blood work came back normal (of course, what else did I expect).

He's sending me to a new gastro doctor, to get a second opinion, we still think something is being missed by the usual "scope" only type of gastro doctors. I still want the zinc/copper theory to be investigated that was brought to my attention from a member here. It's not something that would normally be looked for, but it sure could explain a lot.

130 lbs. is the line in the sand my PCP is drawing. It I hit that, he's going to recommend a portable feeding device, that will bypass my stomach, and slowly inject high protein/high calorie liquid of some type. Said if I drop below 130, then I will be risking chemical imbalances that could become irrevisable, and said outright, I could be at risk to die. Pretty serious stuff.

I am officially anorexic (no surprise there), but don't confuse it with anorexic nerosa. Two different things. I am not losing weight on purpose, nor am I surpressing or controlling my appetite. I simply have lost any semblance of hunger or appetite, and a very vicious circle has developed as a result. The more I don't eat, the smaller my stomach gets, and when I do eat, it's causing the cramping and diarrhea, and around and around we go. Any kind of forced eating only results in even more weight loss.

He's having me see an eating disorder doctor, to see if they can find a way to slowly increase the calories I am trying to consume, while allowing it to stay in me long enough to extract the nutrients. For me to gain any weight right now, I would have to consume (and keep in) at least 2,500 calories a day. On a good day, I may take in 600-800. On a bad day, less. I have consented to do what he has suggested, as even I sense I am fast approaching the point of no return. And no, I don't have some death wish.

He did consult directly with my oncologist. They agreed, they do not feel this problem has any connection to my on going PC. They do not feel it has anything to do with my 4 year plus use of strong pain medications. My oncologist feels that my body is well opiate tolerant, and he sees no indication that I am being over medicated, nor do I have any classic negative side effects from their proper use. Plus he knows he would have a very hard time of controlling my severe chronic pain without such drugs.

So the two doctors are going to work as a team on this weight loss problem, until there can be found some way, hopefully, to reverse it. My PCP remarked that I had a very sound and caring oncologist on my side.
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On the VA side, what a difference 24 hours has made. Got a call from the jerk in Columbia that was sitting on my approval. He apologized about 25 different ways. I do believe his job was directly in jeopardy to how he handled me. We decided to have the hyperbaric treatments done via GHS (Greenville Hospital System). He said give me 15 minutes to get them to approve the VA payment, and he would call me back. 30 minutes later, he called, and said GHS would accept the VA, and that sometime today, GHS would call me and set it up.

By mid-day, GHS called, they were real nice/caring on the phone. She had read the VA Oral Surgeon's report on me, and remarked what a terrible situation I was in. I go to GHS at noon tomorrow (Thursday) to talk to their hypobaric medical team, as a formality. If all goes well, and she believes it will, I will receive my first of 20 pre-surgery oxygen treatments beginning the Tuesday after Labor Day Monday. They will be done Monday through Fridays (much like radiation treatments). She said each session, once in the chamber, will last 90-120 minutes. She said some people will have tremendous headaches at first, which is normal, until the body adjusts to the intense pressure, perhaps even some ear aches, but that should pass. I will be lying in pure oxygen at 3 1/2 times the normal air pressure. Entire purpose is to open and enlarge all the blood vessels in my body, to make it safer for the extensive dental surgery to take place.

If all goes well, 1 or 2 days after the last treatment, the surgery will take place in the full OR at the VA Hospital in Columbia. I may or may not have to spend the night, or at least, we may spend the first night post surgery in a hotel, and the VA will pay for it, and all travel expenses.

My wife will take a few days off to make sure I am comfortable and recovering fine She has loads of PTO time built up.

Then, I will have to undergo 15-20 (TBD) treatments post surgery, to encourage proper healing.

The oral surgeon is well aware of the weight problem and will be in communication with my PCP and my oncologist at all times, in the even of problems or if they feel they need to abort the surgery.

So there's a lot on my plate right now. I am not afraid to move ahead with the surgery, as having a mouth full of crumbling and rotting teeth is not helping the eating problem either. It needs to be done, while the VA is willing to cover 100% of the cost.

The part I don't like, is that I will not have any teeth for 4-5 months post surgery. The surgeon said that it will take that long for my gums, and jaw bone to recover properly from the surgery. Then if all goes well, I will be fitted for full dentures, but he said that too, will add another 30-60 days to the total time without any teeth.

They are also including a nutrition doctor, to help my wife and I come up with some ways for me to be "fed" during this long period with a sore mouth and no teeth. I may have as many as 100 stitches in my mouth during this time, something I am not looking forward to.

So if you are a prayer, please continue to pray for my wife and I. If not, your continue well wishes and support are dearly needed and appreciated.

Please don't suggest to postpone or to abort the dental surgery, I desperately need it, and unless the VA was footing the bill, there would be no possible way for me to have this much work done. Of course, if any of the doctors feel that its too unsafe to proceed at any point, he will have the winning vote to stop things, if not, planning on moving forward.

So that's the latest. Had I not threw a big fit on the phone 2 days ago, I would still be waiting by my mailbox, for a letter from the VA that was never going to come on its own. Still disgusted with the administrative side of how the VA handles, or should I say, not handles, medical matters with we vets.

I have no complaint about the doctors or the nurses themselves. Most of them work for the VA for a fraction of what they could be earning if they were in private practice. But those pencil pushers, they need to clean house and fire the entire bunch. Perhaps only vets should work for the VA, now that's a novel approach!

David

Thanks for the updates..

of course prayers will continue !!

Glad your dental stuff is moving along!
As for the calories, have you tried experimenting with different types of smoothies, other than off the shelf boost drinks, etc?
So something like a high calorie protein powder, blended with almond milk or similar (or water if need be), and whatever else you can think of to throw in, like a few spoons of peanut butter, etc.?
I know that won't resolve whatever internal issue is going on, but just thinking of what else you could experiment with, to see if you can get your gut to absorb some calories before going into cramp mode.
Also, out of interest, how do straight fluids, like water, affect you? Does it cause any cramping? What if you try gatorade? It's not high calorie, but has some.
Take care.

David,

Thanks for the update. Been following your story for several months now. I am one of those guys that stands up for what is right and would also be on the phone to demand some answers.

Lord willing, next month, Dorothy and I are going to attend the Rochester, NY meeting. Since it's just six hours away to her sisters in Rhode Island, we're leaving a few days early and could meet you for lunch or just meet for a little while and talk. We would love to meet you and your wife, if it works out. You can let me know.

David, for the past several months, I've added you to my daily prays.

Have a great day,

Dave in Bartlett, TN

THURSDAY AUGUST 28TH UPDATE

I only expected to meet at the Hyperbaric Unit at Greenville Memorial for perhaps 30 minutes, maybe an hour. I was there 3 1/2 hours. I didn't realize what a big deal this kind of procedure really was all about.

They are the only official hospital sanctioned hyperbaric unit in my area. They have a staff of 6. 2 doctors, 2 nurses, a nurse practitioner, and a secretary. They were just like a tight family. I was well greeted and treated, they made sure that I was always comfortable and well informed of everything that was going on.

First I was shown the machine. It looked and was shaped like a two-man midget submarine. The long part was a huge thick clear tube with a skinny bed running through it, and a folding sliding chair on the other end. The other end, is an entrance capsule, whereby they can enter the tube and assist the patient if needed, without depressurizing the entire unit. It looked just like the hatch on a submarine.

They even use "sub' terms. Each session I will have, is called a "dive". And they have a "dive officer" that sits at a console outside of the clear tube, that's watching and monitoring the patient every second they are in a dive.

For me, each dive will last 2 full hours. I can choose (when you first enter) to either be seated at an odd angle, or you can choose to lie down. You just can't change your mind once you are locked in.

I will have access to a tv set and music, both seen through the clear tube. Because of the high fire danger from being in a heavily pressurized pure oxygen atmosphere, there are so many pre-cautions. I am not allowed to have jewelry, watches, books, magazine, etc. Not even deodorant or after shave on. Any of those things are potential fire spreaders. I have to strip down, and wear some special made cotton gowns during the dives.

While considered safe, there have been at least 80 deaths world wide from these chambers, but was told most of them were because of people bringing stuff inside that actually started the fires.

I was grilled endlessly by one of the nurses, followed by a doctor, and there are so many medical conditions that would have excluded me from these treatments. Fortunately, was given a clean bill of health on these questions.

I will start the first of 20 pre-surgery treatments next Tuesday at 2:30 pm. Then I will have the surgery in Columbia. He said, depending on the outcome of the surgery, I will have a minimum of 10 treatments post surgery, but it could be as many as 20 more. My oral surgeon will make that call.

It's a little bit scary, but I so badly need this major dental work done. I was warned of the risk of having
ruptured ear drums, bad head aches and blurry short term vision from the treatments. These are the known side effects.

I am more concerned about the pain post surgery, as I am already on such potent amounts of pain meds now, not sure how they will compensate for the additional pain. That and knowing that they anticipate I will need 4 to 5 months of toothless healing time on my gums and jaw bone. My wife and I are already discussing how to keep nutrition in me, already a major issue, without having any teeth to work with. Doctor is well aware of this issue, and will work with us.

Would have never guessed that the radiation from year 2000 would come back to bite me so bad this many years later, but such is the case. The oral surgeon said there was nothing I could have done to have prevented this from happening. He feels that way too much radiation was shot at my throat, way more than the normal protocol, but too late to reverse anything.

David

Thanks, Chart.

Will have to pass on the ice cream, though I am sure it would be soothing. During this entire year of weight loss going on, I have for the first time in my life become very lactose intolerant. Last time I had ice cream, about a month ago, it really triggered a violent reaction of cramping and diarrhea.

What doesn't make sense, is that even if I have cereal (usually mild rice based cereals) with unsweetened almond milk, I get cramped up, and almond milk has zero lactose and isn't even remotely like real milk. Had a bowl of cereal this evening, and had immediate cramping followed by diarrhea.

We are going to have to think long and hard during the recovery period after the dental surgery. The oral surgeon is expecting it to take 4-5 months to recoup, before they can begin to fit me for dentures. That's going to be a long period of time without any teeth.

Hope your husband is back to snuff after his teeth removal. If it were not for the extensive radiation damage in my mouth, I am sure this would not be such a big deal Some people are fitted, at least with temporary teeth, as soon as the teeth are removed, but this will not be the case for me. I never get to do things the simple way, always has to be a major production, lol.

Thanks for your prayers,

David

David -

I sincerely hope the hyperbaric route does you good. I saw the hyperbaric chamber in the cancer center here in Gainesville where I got my radiation. The submarine analogy is a good one, although the thought that came to my mind was that it resembled one of the early space program capsules (Mercury series for example).

Your situation reminds me more and more of the Sherlock Holmes comment: "When all else has been eliminated, whatever else remains, however unlikely it is, must be the truth." That is, sooner or later SURELY they will find something that will help you. Maybe their approach has become one of simply throw-everything-at-the-wall-and-something-will-finally-stick, but keep the faith, that may be just what happens.

Perhaps another analogy is selling a house. A dozen potential buyers may come through your place, but none of them are interested. Then that one comes through who says "yes" and makes you an offer. And all it takes is one.

You are a remarkably strong person, David. I remain convinced that your perseverance will be rewarded, and possibly soon.

Wishing you only the best, David... Don and MLN

Just a though, but do any of your doctors think AI link maybe crohns... Auto immunes can cause gastric upset and a loss of appetite...since all your testing is coming back clear....just tossing in an idea...don't wish it on anyone, ever...
Prayers...