4/9 - Very Disapointing & Depressing Doctor's Visit

David,

Have you tried acupuncture at all for pain?

Susan

Barb,

I do feel you and I are like peas in the same pod. Yes we ail from different things for different reasons, but the common denominator of severe chronic pain and fatigue unite us. As far as physical suffering, pretty sure you are #1 in the CP/Lupus group, and I may be #1 here at the PC side, as far as all the pain and fatigue part. Why were we so lucky? lol.

When you write here, I know that you 100% understand and relate to what I write, because you, yourself, suffer equally.

Don't worry, not planning on giving up or checking out any time soon. But others need to understand, that one can only portray so much of a "positive" attitude when hurting so bad for so long. You can only put on a happy face for short periods of time on a daily basis.

For those that don't believe, or think people like us aren't tough enough, or need to be tougher, I challenge any person, to trade places for just 24 hours, and live in either of our bodies. It would make a believer out of them.

I am here for you too, never forget that.

This morning, I woke up in severe bone pain, covering both hips, both upper legs, and both knees. I am finding it harder and harder to find a comfortable sleeping position. I can't sleep on my back, can't sleep on my right side because of the stoma, so that leaves me with sleeping on my left side. But the pressure of my bones touching bones has become worse with all the weight loss.

Speaking of that, I lost 3 pounds from yesterday morning to now. I don't even see how its possible. I had two big meals (for me) yesterday, including a full steak dinner. I am now at the lowest weight I have been at since I was 28 years old.

I have this very expensive custom Italian business suit, that I bought about 20 years ago. I could barely fit it when it was made, I wore it one time to a Christmas party, then never again. Over the years, I tried on the pants, and it was hopeless, only reason I didn't give it away or toss it, because it cost so much money at the time (over 1,000 bucks). Long story short, I recently pulled it out, tried on the pants, not only do they fit, they are almost too loose! I never thought I would see the day those suit pants would fit.

But when I talked to the doctor yesterday, he only viewed the weight loss as a good thing, and he said, "most doctors would be happy with it". Some how, that didn't sound like a good answer. Yes, less weight is generally more healthy, I get that part. But to be losing it so fast. Not like I am on a starvation diet and its sure not from exercise. He gave me a weight number, and said though, he wouldn't be comfortable if I ever went below that mark. I told him, I am not purposely losing weight or trying to, but that fell on deaf ears.

good luck, my friend, best wishes to you. we both live to fight another day.


David

David, regardless of how your oncologist feels about acupuncture, do you think it could have some merit for you? MDs are generally not fond of non-traditional treatments (acupuncture, chiropractors, etc.) but that doesn't mean that they can't be effective tools for dealing with pain. I understand the part about money...do you know what acupuncture would actually cost? Might be worth looking into as it just might help with the escalating pain and sure beats adding more opiates to your daily routine. Something to consider.

David,
A couple of days ago I posted the results of my 72 month checkup and was pleased to see a response from you soon after. I told my wife you responded again and she asked how you were getting along. As you remember my surgery was just six months before yours and I have followed your progress, in fact my wife and I would discuss your situation, your thoughts and your wins and losses. Even with such lousy results you have been a rock for me as well as for everyone who is going down the prostate cancer road. I don’t believe you have missed addressing any new member and given them anything but total support. God Bless You!
As a member of your fan club we pray that you will receive better news and immediate relief from your pain. You have made life better for a lot of people and I hope in some way that alone can help carry some of your burdens. Get well my friend.
Age 61 at diagnosis
PSA Jan 2006 2.8, PSA Jan 2007 3.7, PSA Jan 2008 4.4
DRE Normal, Biopsy positive 1 core in 10,
Clinical T2C, Pre surgery Gleason 3+4=7
Bone scan Normal, Cat Scan Normal
Da vinci robotic Surgery April 30, 2008, Fremont Nebraska
Post 72 month PSA-undetectable

I deleted a rather nice prayer here, asking that David's pain be eased and his body healed, that he be brought peace and his doctors guided in their actions.

My understanding of prayer is that it is between the hearts of the devout and their maker. He does not need to read it here nor can overtly religious material be posted here.

Sorry.

PeterDisAbelard.

Post Edited By Moderator (PeterDisAbelard.) : 4/10/2014 1:57:22 PM (GMT-6)

Oh David,
That is really distressing news. This is so far beyond my expertise I can't even make a suggestion.
Try to rest easy, my friend.
Jeff

Hi David,

I know someone mentioned this before as far as your
pain goes but have you considered marijuana use for pain.
We talked to our Oncol. about if and when the time comes
to mask the pain for my husband, as to what he thought. He was all for giving a prescription to us. We are in Ca. but you may not be in an area where it is legal for medicinal purposes, but consider it if at all possible.

BOOGEE

I will chime in with the others offering prayers of comfort for you and your family. You are loved by so many here.

David, so sorry to hear about your situation, just know you are in our thoughts and prayers .

You're a better person than me. I would have clocked her (the rad oncologist)...
In this day and age where people win lawsuits for the most frivolous reasons, it's unbelievable that they can't be held responsible for the negligent treatment and damage they've caused you.

Post Edited (gibson00) : 4/11/2014 5:43:40 AM (GMT-6)

thanks one and all.

Gibson - the tort law changes in south Carolina a few years back, all it accomplished was make it near impossible for any patient to ever win a malpractice case in this state. It was one of those 1% deals we hear about in the news. Had I died, perhaps my wife could have gotten some kind of settlement.

Even the limits on "pain and suffering" in this state is unrealistically low, though right now, I would settle for that.

And the 3 year statute of limitation is unfair in my case, because we all know that radiation can take time to manifest fully.

After going through 4 law firms and then representing myself at the end, I got a big zero. Not even an apology, nothing.

Wish there was some other recourse. I have at least 6 doctors know, that would testify that all this damage was caused by that radiation event, that should mean something, you would think.

David

Have lost 5 lbs in less than 72 hours, yet doctors not worried. At what point will it be a concern to them?

David –

I haven't weighed in yet because, while I could have expressed my sincere sympathies for the developments you now face, which I now do and certainly mean them, I really was trying to think of something practical to say, something that might offer you an idea of something you could actually do that might provide you with a means to improve things, or at least help with the stress.

In thinking about your situation, of things you might do to offset this disappointment, of course one of the first things that came to mind is your considerable skill as a writer. You are already a published author, your skill in writing posts for this forum is beyond any doubt, writing is your strength.

So the idea that you might now do something special with writing occurred to me. But what? I don't know if you would want to write any more fiction, although I know you would be successful at it if you did. A blog on a website of your own (a la Todd or Andrew) is possible, if you would like to try that.

But then I got an idea I would like to present to you as something you might like to think about doing, whether you would really want to consider doing it or not. Just consider it a suggestion.

It comes from my days as a librarian, when one of the more interesting forms of book that would often cross my desk was "personal account anthologies," that is, collections of stories or accounts from different people about a common experience they all shared. Things like several firemen each contributing a chapter, giving their own perspectives, to a book about firefighting. Or different soldiers each giving his own account in his own words about a common battle they were all in.

The idea I had for you was that you might possibly be interested in communicating with some of your friends who are also unfortunately experiencing significant pain issues (we here even know who some of them are, as they often post on your threads) and ask each of them: Would you like to write a chapter telling your own story, and I will write one telling my own, and I will then edit them all together into a book, with a title such as "Living with pain : stories from real life" (or something like that).

Granted this is just an idea, just something to think about. But if you think your friends might actually be interested in doing something like this, in telling their stories which you would then edit into a book, then it might be an opportunity for all of you to put down in writing how you are really feeling, with the cathartic effect that brings, and if such a book actually did make it to publication, it might well be a good read for others who could benefit from its wisdom.

Just an idea.