just brief post-surgery report 10/3

I'm having stomach problems today...drinking some flat rootbeer....can even think of food!

Prayers to you and I hope they can ease your discomfort in the chamber...

David:

Just a quick post to let you know I'm thinking of you. I hope the oxygen treatment went well for you today. You've been on my mind a lot. Trying to think of protein items that you could get into you. I'd still suggest the eggs scrambled and just kinda swallow them w/o chewing anything.

I posted late last night on the lupus forum about my day with my doctors, it was a hard day. A discussion was brought up about the possibility of needing my leg amputated if we can not stop my heel from breaking down. He also talked with me about my torn rotator cuff and how I'll see a PA next week instead of the surgeon. Looks like I may require surgery for the torn rotator cuff.

Anyway, if you want the full scoop you can see it on the lupus forum. I just wanted you know that you're in my daily prayers and I'm here for you if you need me I'll be home and near my phone if you should need someone to talk to. I was hoping to hear that you were able to eat a bit more. Just keep at it David don't give up and we will both get through this week.

I'm wiped out so much from yesterday and hubby went to bed already but I'm going to try now. You take care and I hope you can get restful sleep tonight and the pain lessens tonight.

Hugs,
Barbara

David, it sounds like it's time to dump the VA doctor and get back with your "regular" PCP. And where is your oncologist in all of this? It would seem to me that he, more than any other doctor, would be on top of things with you but it sounds like you haven't seen or heard from him in a while.

Your frustration and annoyance with doctors is completely understandable. In all honesty, they have done little if anything to help and all of them seem to have thrown their hands up in the air and all they seem to offer are promises that never come to pass. Either these doctors are not as good as you think they are or your situation is so unique that it's beyond their expertise. It is very surprising to many of us that with all the issues you face - chronic pain, chronic fatigue, advanced prostate cancer and now a drastic, undiagnosed weight loss of about half your body weight - that not one medical professional has taken the bull by the horns and admitted you to a hospital for further evaluation and monitoring.

I can't help but wonder why no doctor is investigating some type of food allergy since you know you can't handle dairy and seem to react strongly to foods with wheat or gluten in them. At this point, with your total lack of appetite and the fact that you probably haven't had more than a few hundred calories in a 24 hour period, your body won't be able to tolerate much of anything. I simply don't understand how any one can stand by and watch this process and not be concerned enough to act.

In all the years that I've known you here, there really hasn't been one doctor who has been willing to think outside the box. Mel's repeated suggestions about going to someplace like Mayo has alot of value when viewed in this light. Perhaps it is time to admit that your medical team may have reached their limit and that it's time to bring in a whole new bunch of doctors who are willing to look at things from a different perspective?

This is almost theatre of the absurd.

I still find it hard to believe that they substituted a different surgeon literally at the last hour. Now they suddenly change doctors on you, too.

In fact, in this day and age, when even a cold might delay a surgery, I am amazed the doctors seemed to totally ignore your dangerous weight loss in going ahead with the surgery, that results in continued difficulty eating and hence more weight loss.



This pattern has repeated itself almost since I've been on HW (5 years or so). You get a doctor. Everyone is gung ho. THIS TIME, the doctor is going to leave no stone unturned and get to the bottom of this.

Frankly, something doesn't add up. Meanwhile, you totally ignore this advanced PC while we all know that cancer can cause a huge weight loss. Nobody seems to care enough to even look at your PSA??? NOBODY?

Sorry, but this just flies in the face of common sense. I may not be a medico, but I've certainly learned a few things about PC. One thing is that at some point you monitor your PSA on a regular basis. You are way past that point.

It's time to get out of Dodge. Mayo seems like an excellent choice.

Mel

Purg,
Not sure if you can see Mel's posts....
If you can, geez, I gotta agree. After all the doctors, all the failed treatments, all the times they've been wrong or just haven't had the answers........elephant in the room.....the one treatment that so many PC patients use, your doctors have not even tried, and let the cancer make its way through your body (at least to some degree).
I know you are sick of people mentioning it......but it just seems like the one thing that is so obvious for a doctor to try, to try to stop the cancer just to see if it reverses your body's desire to be wasting..
I know you and your docs have mentioned QOL issues with HT, but at this point, can it get much worse? And maybe it would get better.
Anyway, I hope you don't let this post upset you, I know you don't like people mentioning it over and over, and you obviously have lots to deal with.
But it just seems like the big, fat, glaring, flashing elephant in the room...

Hope you get the VA doc stuff sorted out, you deserve a break.
Take care.

David,

I'll have to agree with Sephie. Mel. and now Gibson. It is time to try Mayo and see if their team of doctors can find out the problem.
The reason for the weight loss must be found and soon. December is too late! Many of us have fired our doctors for much less than what you have been through.

To Thine Own Self be True

Bill from Florida

Totally agree with Mel, sephie, gibson and others.....I wouldnt trust VA after the way they changed Drs at the last minute for surgery and now changed your VA PCM....its time for you to go big....even if you have to pay a chunk of it yourself. Thats too much weight to be fooling around with david....its time you saw the best. And if they cant figure it out....at least you will have known you exhausted all options. Just my opinion of course.

Alf - never heard of the Trismus before, good information there, will look into that. I am aware of a couple of unique dental conditions related to radiation damaged teeth and gums, and that is what the surgeon is working hard to avoid. My greatest fear at this point, is some kind of major infection during the healing period.

Yes, we used nothing but ice packs as the surgeon advised about the first 8 hours or so, then he said to switch to heat pads. The ice prevented most of the severe swelling we had been warned about, and help to slow down and stop the heavy bleeding the first few hours. 8 days later, still needing to use the heat during my nap period and during the night. Seems to hurt worse when laying down for some reason.
--------------------
Chart - was unavailable today to spend the time on the phone with the VA, but will be doing so Monday. I want to see the other doctor, not the new doctor, and appearently, whoever made this new appointment must not be aware of my condition or my medical notes ongoing. Hopefully I will straighten this up. The other PCP was planning on me seeing him perhaps as early as next week. I may use the VA's TAP line to leave him a message, he may not even realize that he got switched out, and it would explain why I didn't hear back from him
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Friday Update:

Just when you think it can't possibly get worse...more convinced than ever, that Purgatory here (me) really is stuck in some pseudo-hell or real life purgatory.

Went to the treatment, already apprehensive from yesterday, and find out, only after changing into the special clothing, that I was in for at least an hour delay (for the 3rd time this week). Which I had to spend sitting on a very hard and uncomfortable chair in the waiting room.

So they were behind again, with the same problem patient on the docket before me. I finally get into the chamber, and within 5 minutes, my back, hips, and tail bone were hurting unbearably. No amount of wiggling, squiggling would ease the pain or discomfort. As I did before, tried to keep my mind off the pain watching a movie, but didn't help much, as I was building up to an easy level 7 pain or higher, and with each passing minute, it continued to build up. And yes, I had taken the max. amount of pain meds I could have an hour before I went to the hospital.

Pretty sure the delay added to the problem. The only consulation, was due to them having an emergency case after me to deal with, they brought me back "up" to the surface about 20 minutes earlier, by leaving the helmet on me and pumping in more oxygen as they depressurized the chamber. Not sure I could have lasted that extra 20 minutes, as was in such a state of panic from the pain and being trapped in the chamber. Had it been a MRI or something, would have insisted that I be brought out immediately, but with hyperbaric chambers, once you are pressurized, you are in there. Period.

I was close to being in tears when I was finally let out. took 2 of them to help me to my feet and to open the door to the changing room. Had to sit down 3-4 times in my walker going from the main hospital building back to the parking lots.

Went straight home, took more meds, and used the heat pad, and at least crashed hard and slept about an hour or so till my wife got home.

Told them today, just don't know if I can handle another week of that, as there are still 5 more treatments to go. Said it would be nice if they would call me about the delays, because I could have killed the extra time doing something else or at least being in a more comfortable situation.

Been a tough first week post surgery, at least I have the weekend off to try to erase some of the horror of dealing with all of this.

David:

(((gentle hugs))) I'm so sorry that you've had a really crappy couple of days. Sounds like you're living in purgatory period. Just as I do, I believe. I too got frustrating news today, which set me off on a tantrum of sorts I guess you'd say.

However, not here to discuss my issues, I'm here to let you know that what the VA has done to you with changing you PCM, isn't unusual at all. My hubby has had 5 different PCM's in the last 3 1/2 years at the VA. None of them are even doctors. They are all NP or PA's, he in my opinion, needs to see a Dr.

He's had issues with a cough ever since he returned from the 1st gulf war and all we hear is that his lungs are fine. Now we know that he was exposed to a lot of stuff back then. Once he went to Iraq and Afghanistan, and Africa his cough became even worse. Even while on Active Duty, the doctors blew him off. Now, they say he's not enrolled in the VA system. We live in a very large Metro area and there are two huge VA centers nearby and they can't get it right. Or get him an appointment, last month his BP was off the charts and the military clinic that he can go to said that it would be 30 days before he could be seen. It took me calling and asking do you want him to have a major stroke? I managed to talk with a nurse and she made an appointment for him. Of course, he didn't see his Dr but someone else. At least someone saw him though.

I'm just wanting to give you heads up that your battle may be a hard one. Hubby has thrown up his hands and quit. Said they must just want him to die instead of helping him. Of course, I'm worried sick over this but I can't force him to do jack. He's the most stubborn man I know.

I know this isn't what you wanted to hear, but I wanted you to know that it could be quite the fight to get your old VA PCM back that's all. Fight you can, but do you have the energy to do so, I'm not so sure. I know that many folks here have suggested you go to Mayo. Have you considered coming to NIH?

I know that the Active Duty Military Doctors that I've been seeing for the past 27 years usually can't figure things out with me. They scratch their heads and say I'm a puzzle. Once, the infectious disease Doctor looked at me two years ago, he referred me to NIH.

Since, I go to Walter Reed in Bethesda and NIH is across the street, I gladly went. Well, guess what they figured out that I have this rare form of leukemia and that I have this under lying immune problem in addition to my auto immune issues. They very quickly put me into an infectious disease research study and I'm followed by one of the top infectious disease Doctors in this country.

I'm not trying to second guess your Doctors or your decisions, but I'm just suggesting that maybe NIH could offer up something. They can do some pretty awesome stuff there. It's just a thought, if you should think you'd like to be seen there, I could speak with my oncologist. He was trained at NIH and still has privileges there and he could tell me who you should see.

As for Mayo my cousin works there and I contacted him for his assistance and he got me into contact with the correct department and I didn't get anywhere with it. I know your frustration in all of this. I'm at the point of wanting to give up totally too. I literally just don't care anymore, like you not sure how much more I can take.

Hang in there David, if there is anything at all I can do to help you, please let me know. I just wanted you to know that the VA thing isn't uncommon and I'm sure you know this but sometimes we need to be very careful of what we wish for, cause the wish may turn out worse than the present situation. I'm not necessarily saying that to you David, but just in general statement. Hubby reminds me of that often when I say...... Oh only if they would........

I hope your pain gets better over the weekend and just rest as much as you can this weekend. I'll stop by tomorrow to check and see if you're feeling any better. I hope and pray that you sleeping and resting comfortably.

Hugs,
Barbara

David, David, David...please. I'm not on your ignore list and many here know it by what you write. In spite of the fact that you think I talk behind your back (though how that's possible when you know what I'm saying), I am concerned about you. This saga has been going on for years with no end in sight. I've seen such a change in you over the years and I'm frightened for you. Is that wrong?

The point of my post was simply that the VA has not come through as they said they would or as you had hoped they would, which is consistent with most of your experiences with various medical specialists. You were obviously upset or angry at getting a letter from the VA saying that your PCP has been changed and you wouldn't see that doctor til December. I was angry and upset with you, as were others here. Is that wrong?

You have seen a doctor in just about every medical specialty and each time the relationship starts off with how experienced they are and how committed they are to your situation, etc. And each time, you end up with nothing but more heartache and suffering, and are no closer to a resolution. This is insane and I and others have voiced that feeling numerous times. Is that wrong?

No one is faulting your need for sympathy. You've been through alot of disappointment and are still suffering. My point - and others' - was to try to help you see that it's obvious that whatever plan you and your doctors are following isn't working and that it may be time to regroup and rethink the situation. Is that wrong?

David.....its not the quantity I was talking about or others are talking about.....Im sure you spend more time in and out of the hospital than anyone here. I think what many feel is the quality of Drs you see....the VA is simply not known for quality in tough situations like yours.....you may need to see the best the US has to offer...even if it cost a little for you. But as you said you dont pay a dime so why not check out a place like mayo? It cant hurt. I know being retired military....I dont have to use the VA....I use tricare/medicare combined and they dont mess with cancer....because they just dont have the Drs to support us.....so we get referred to a specialist of our choice.

I know of a few guys who died under VA care for having to wait way too long for care who probably would have lived if treated properly from the beginning. I believe taking the VA route is a step backward for you but to each his own.....I wont mention it again.

Ok, this is getting nuts. So let's set the record straight, once and for all. I have tried the polite route, and it obviously isn't working. Let me be blunt for a moment, then I will say no more about this, ever.

Yes, Sephie and Mel, you are both on my ignore list, and after I came back to HW after my one month or so break, I tried not to use it. But you forced my hand.

I do not log out, and check for ignored people's posts, not ever. Not even once. Sometimes, my computer will log me out automatically from all the sites I go to.

In the case of this thread, the only reason I knew that remarks were being made to me from Sephie and mel, was because other posters (not on my ignore list) referenced what you were saying. Don't you get that? Why is that hard to understand?

I have perhaps 6 people on ignore, won't list the others, because there is no longer an issue with any of them and I don't see other people referencing their posts about me.

So I ask once more, and sincerely, since you know I have you on ignore, why do you continue to post to and/or about me? It serves me no purpose at all. Just accept it. I can't be friends with the entire world, its not one of my goals.

So for the peace of HW, which I am still a big believer in, let's just agree to disagree about this situation. It's my right to use the ignore as much as any other member. And speaking only for myself, I would never keep posting to a person that I knew had me on their ignore list.

So that's all I ever intend to say about this, just respect my wishes, and we will all get along better in the future.

I am so thankful for the many, many sincere and caring people here at HW, and I will continue to update as I can and will always reach out to help those here, that are in need of support, empathy, and care.

I can't offer much serious technical help on the nuances related to PC, but then, I don't have those skills, nor am I remotely a medical professional.

As I have said for years here, I do, however, understand fear, pain, suffering, uncertainty, etc. These things I know first hand, and live a greatly diminished quality life as the results of all that has gone wrong with my PC journey and other medical maladies.

Live and let live,

David