Just back from Emergency Room a couple of hours ago

Purgatory said...
Tim, I can't make any doctor do anything in particular. They are just not following up with me, and me leaving phone messages gets no results. Not like I can stand there with a gun in my hand, and demand an answer or solution. Both doctors acted and spoke as if it were critical but their lack of action, no treatment plan, no other tests ordered, etc. - speak as if it really either doesn't matter, or its not as dangerous as they claimed it would be, or they are just being plain negligent. Or a combination of all of the above.

Not leaving the office the visit is over isn't a practical solution in real life, all that's going to do, is for them to call security and have me escorted out.

I am close to the point, where I simply don't care either. What difference does any of it really make? I already feel like I am becoming invisible, and have no relevance left, and no real purpose - other than simply existing for another day. Whoopie! Every day is a bonus to me, is a joke when your life sucks so much, and you have to live with constant pain and problems without solution. What's the point? Just so you can be miserable for another 24 hours?

From the time I was first treated for PC back in October of 2008 to now, its been almost an endless disaster story, no point repeating any of it, we are all sick of the saga (especially me, I had to live it), and there is no end in sight with what is going on with my body. I didn't ask for any of this to happen, but I have sure have had to pay the price endlessly regardless.

Never mind, even I am sick of me and this nonsense. Whatever happens, happens, no point me giving it any more thought. Had enough of doctors and tests that go no where.

David--

While it is understandable, I'm sorry to read that you feel this way. I hope that you can find peace of mind in the midst of your suffering.

Tim

We have talked about going to a higher center, but no consensus on that either. Ex-boss talks about possibly funding a trip to John Hopkins or Mass General, but again, no final opinion.

Still have limits (travel) issue, and of course, money. VA not going to fund a trip like that, nor do I think I would get too far with Medicare/Medicare Blue.

My hopes were dashed, right after the VA PCP said he would get to the bottom - after he talked to my PCP and my oncologist, then just like that, no warning, not ever asking me, the VA decides to change my doctor to a complete unknown (to me) VA doctor - in December, who knows nothing about me or my case or my current situation - and no explanation why this doctor change was made.

It's not that I am so "opposed" "vehemently" (your words, not mine). I was just working the system I have in place with the resources I have. Not everyone can fly all around the country picking and choosing the best doctors. Knowing my luck and track record, I could see going through all this, and them still standing there and saying, "We don't know".

Yes, I am in a funk, but feel at least part of it is justified. Easy for others outside my parameters to cast judgment about what I have and haven't done. But appreciate the thought and concerns of others, regardless. Sometimes in life, you just don't get answers, let alone easy answers. Not like I haven't tried. Think of all those months I endured all those neurological tests for nothing, some of them quite painful at that.

I am not one for faking feelings, I am always honest about how I feel on a given day. I have already toughed out more tough stuff than a lot of people could handle, so don't feel I need to prove anything to anybody.

I hope the VA returns your calls soon, Many more continued Prayers...

David:

Your post claiming that you don't deny vehemently the suggestions I and others have made is another perfect example of...DENYING VEHEMENTLY.

You deny so vehemently and stridently that you make a big show of putting folks on IGNORE.

You are being treated in a shabby manner. It is outrageous. You have all these "great, top" doctors who promise you they will get to the bottom of your problems... They do not. They are most certainly good people, but their knowledge relies on their own experiences, usually thinking within a box.

Quit making excuses. I know you are tired and have had enough. You have gone through more than so many of us. But, no excuses. Money? You have told us many times about getting this money and that money and a potential lawsuit that you are working on with your boss that will net you a large sum.

Well, you can spend it on a car...or go to real top place with real top doctors. No Bozos at Mayo Clinic, I assume. I also assume that you have insurance. No?

Anyway, it seems like clockwork I post this or a similar message. So, I'll stop now and let others post the messages you prefer.

Mel

thanks, chart - dreamer - and Andrew,

yeah, was in a bit of a funk earlier today (and yesterday), so what started as an update turned into a bit of a rant/rave/out pouring (fill in the blank). as I have stated before, I can't always take it, or appear to be stronger than some perceive me to be, I am mere flesh, and my mind and body has been whittled down quite a bit the past 6 years. kind of hard to keep it all together, all of the time.

feeling a little less shook up this evening. plan is to stay on the phone with the va in the morning, until I can speak to someone in person. aside from not liking the va pcp/weight situation, they still haven't made me a new follow up appointment for the dental surgery. I had a follow up apt, but they canceled it before it happened, but never re-set it with me. typical.

it's been 4 weeks tomorrow since I had the surgery. in some ways, it seems longer, and in others, parts of it is a horrible blur of events. so glad its in the past, and those horrible broken crumbling teeth are gone forever, never to hurt or haunt me. my gums are slowly healing, but still can't bite down on them, as in attempting to eat. have to get food to the roof of my mouth, and swallow from that point, requiring a lot of water to get it down me without choking.

I have a few sore areas still. the right upper area of my mouth still feels like phamtom teeth, but of course, they are not there. must be the sockets that run close to one's nasal passages. that area is still very sore. the left jaw bone, where they did some serious cutting and work, still hurt quite a bit at times. I only ever used the extra pain meds the surgeon gave me for perhaps the first 4 days, and since then, I have only been on my regular pain meds, and as I stated above, I have chosen to cut back some of the Norco by choice. I am picking up more pain as the result (my regular chronic pain sources), but feel its something I needed to do, as I now weigh over 105 lbs less than when first prescribed the doses I am on. If I felt, or feel, I need to take more, I will have it available, if not, I will try to tough it out with less.

Didn't mean to come across so despondent earlier, but its was how I was literally feeling. As usual, I will continue forward, and as always, I do the best I can, all things considered.

I thought I saw my oncologist again early in November, but looked at the appointment, and its not till the first week of December. We will probably do another PSA test at that time. Be interesting to see if I get another unexpected drop, or if it had started upwards again, or perhaps stayed the same. While there is no proof that hyperbaric treatments can possibly assist with metastatic PC, it will be interesting to see if there was any effect. It may be a coincidence, but I only noticed, that the psoriasis on my lower left leg (which has been there for 30 plus years), is at least 90% gone. Just like that, and it falls in line with the completion of the hyperbaric treatments. Again, from my research, there is no direct tie to those treatments and psoriasis, but who knows, if it helped, it helped. Nothing has ever helped that in the past, I was so surprised to see it all but vanishing.

Hopefully a good nights sleep (still rare for me) will get me in better spirits, to take on tomorrow and the rest of the week. Thanks again to all those well wishing, and for those of you that believe in the power of prayer - I know it helps, and I have many a person praying for me, or on someone's prayer list. In the bigger picture of things, all of my ailments are out of my hands, and I can live with that knowledge.

David

Sure hope your phone calls get through today, keep us posted we do care

I doubt the change in Drs has anything at all to do with ANY patients, and probably done totally without any concern for patient care. Aren't the VA Drs active military, so they just get re-posted from time to time?

Anyway, my suggestion is to keep it simple. Make Dr appt -- or multiple appts if you wish with any and all Drs, go in & say, "As you can see I'm still loosing weight. I understand there are a couple of options, such as X, Y, Z. How do we go about getting me on one of these treatment plans?"

Leaves them no room to waffle or push it off. Whatever they say, return to the question, "What do I need to do to get X, Y, Z?"

I know that you know how to do this....and I know that you are frustrated and powerless and probably finding it difficult to think straight. Lack of nutrition & energy does that to a person. I've been reminded to toss out all the options and go straight to the question like this myself.

So,..... "How do I get on a IV nutrition plan?".

Thx, clocknut.... seems like sometime in my past they were more closely related...wasn't sure if they still were or not.

Purgatory said...


So as you can see, its hard to make progress, when you can't reach anyone, and no one will bother to call back. Screaming and shouting or making a scene isn't going to make someone talk to me.

David

No, I don't see. This is sheer lunacy. There's something rotten in Denmark.

“Alice: Would you tell me, please, which way I ought to go from here?
The Cheshire Cat: That depends a good deal on where you want to get to.
Alice: I don't much care where.
The Cheshire Cat: Then it doesn't much matter which way you go.

Alice in Wonderland

Post Edited (Tim G) : 10/31/2014 4:48:31 PM (GMT-6)

Oh, David - I hope you read my message before our MOD closes this thread. I am sorry I wasn't here earlier. Ron is having some serious problems and my mind is on over-load. You have so many people that care for you and want the best. I don't like the fact that you are sometimes being ignored and haven't found the right doctor.

Once again we will pray for you, especially that you will continue to have the strength to deal with the extraordinary challenges that life is handing you.

I couldn't have said this better. Yes, you should be concerned about this weight loss. Hopefully your wife can advocate for you, but sometimes that doesn't help and I bet she has tried. Your quality of life remains a concern of mind. We are praying for you each day!

Aimzee & Ron

David:

I'm sorry to hear that you were so down, and I'm truly sorry I've not been around to support you more. I've been in a very dark place ever since I heard I may have to have my leg amputated. Plus all the other "issues" I have. I, like you, never seem to be on the "good" receiving end of things.

I know you're not posting to anymore replies. I just wanted you to know that I've read thru this thread and I've managed to pull myself out of my pit for the moment. I'm here for you and if you'd like email and we'll have a good email chat okay. I get how you were feeling, I know many have suggested you going to a different facility.

I have a dear friend whose hubby has liver cancer, and hep C, and cirrhosis. They went to the Cancer treatment centers of America and he's been very pleased with his care. Could you go and at least chat with them? I do know they are very expensive but....

I also can highly recommend to you NIH (National Institutes of Health) in Bethesda, MD. I am in on of their research studies. They are, as they put it, VERY INTERESTED, in me since I'm so complex. NIH covers all expenses to and from the hospital in Bethesda. They provide lodging for any family that comes with you. If you're accepted into a research study they will always pay to bring you to them for you check ups.

I've been admitted there twice and I have nothing but good things to say about them. They have again brought up the words "Transplant" for me. Meaning either stem cell or bone marrow, IF, that becomes an option for me there will be no cost in it for me. Everything will be covered by NIH. Of course, my military medical center is across the street from NIH and you can look at each campus from the other. Matter a fact my oncologist trained there and has rights to treat there.

IF, you would like to consider getting in touch with someone at NIH, I'm sure I can get the information you'd need. This a huge research facility and they fix some of the sickest folks. My daughters friend was supposed to be dead by age 16 of her leukemia and she's now 21. They put chemo directly into her brain and spine. Tori is doing great, so really think about NIH okay. Plus, I'm here locally and I'd be able to come and visit you anytime that you needed to be seen.

You hang in there okay, we have deal. I don't give up, you don't give up okay. I hope to hear from you soon. I'm going to go and try to sleep now.

Hugs,
Barbara