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Old 02-11-2010, 05:49 PM   #1
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The first two weeks after surgery

I have been recently diagnosed with prostate cancer - gleason 8 with a PSA of 6.3 (was 1.0 about 27 months ago), a volume of 29% and a stage of T1c. Cancer was found in two of the twelve samples.

I am 56 years of age and in relatively good shape and am fairly active, though my job is sedentary. I will likely choose to have lacroscopic robotic surgery.

I have a few questions and appreciate any help you might give.
1. Based on the numbers above, how quickly do I need to commit to a treatment plan?

2. I have never had surgery before. I wanted to know what the first two weeks are like after surgery. Can I manage these weeks alone or do I need to have someone help? If I need help, how much help?

3. Do you recommend anything I can do physically, mentally, and so forth in preparation for the surgery so that recovery is, at least, less traumatic?

4. Any advice for the days (and nights) immediately following the surgery?

Again, Thank you for any advice you might have.

 
Old 02-11-2010, 09:02 PM   #2
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Re: The first two weeks after surgery

Hi Lido -- So sorry that you have to be a member of this club.

I am sure others will chime in but I am three months past my surgery so I can make a few comments.

I will just comment on the surgery which I really worried about because it is a long operation. However, I found the open surgery I had done less painful than two previous hernia repairs.

I found the catheter uncomfortable but nowhere near as irritating as I expected. Incontinence recovery was pretty good from the start.

Wishing you well as you start your PCa journey. Please let us know how things progress.

Skeener

 
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Old 02-12-2010, 05:20 AM   #3
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Re: The first two weeks after surgery

Laparoscopic surgery is a euphemism of the so called "robotic surgery." I don't know how you came to the decision so fast, but I assume that your doctor's group have a colleague who does robotic surgeries, and they want to keep the business -and the money in the group. There is no need to be have surgery immediately, and I suggest you
reverse your decision, and go for an open surgery. Keep in mind that doctors recommend
the procedure that they do, rather than what is better for the patient, because they want to make $ 50.000 in a day - not to pass that check to another doctor or medical group. I had IMRT radiation, and now radiation had a newer technique that is even better. I suggest you take your time, and research the options before you commit. And don't believe any posting, or anybody who may try to convince you to have HIFU. HIFU interests have people posting as patients who supposedly had HIFU paying $25.000 out of pocket in a facility outside the U.S., but they are happily thereafter. It is baloney! The HIFU operators place those postings to lure clients into their business that are illegal in the U.S. Final world? Slow down, and become wiser before you commit. And, in my opinion, you should explore other options that robotic. Many people who have had robotic also had to have full radiation treatment later because the robot left cancerous cells lying around. And hospitals and medical groups have spend millions for robots and they want to recover their investment. Don't fall for. And keep in mind, that nowadays doctors are businessmen and major shareholders in hospitals first, and doctors second. Don't accept their first suggestion as the bible! I personally recommend the latest and most precise radiation therapy called "Cyberknife." Check it out!

Last edited by Aguy44; 02-12-2010 at 05:41 AM.

 
Old 02-12-2010, 08:30 AM   #4
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Re: The first two weeks after surgery

I am glad to hear that the surgery was less painful than the hernia operation and that the issues around incontinence have not been as problematic for you as some posts have indicated. Your response gives me hope.
Thank you

 
Old 02-12-2010, 08:44 AM   #5
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Re: The first two weeks after surgery

Thank you for your thoughts. I realize that hospitals, surgeons, radioligists, naturapaths, brothers, mothers and so forth have their biases. Be assured I am walking cautiously into this world of cancer on which I would rather not have landed.

 
Old 02-12-2010, 12:05 PM   #6
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Re: The first two weeks after surgery

Lido, welcome to the world of PC. I’m very sorry that you are having to join, but hopefully this site will be a helpful resource as you navigate the choppy waters.

It’s choppy waters for a couple of reasons. Firstly, there is a lot to learn. Very few of us knew much or anything about PC before being diagnosed (I didn’t); so, there is a lot to absorb in order to move knowledgeably and confidently through your upcoming months of decisions and actions. Secondly, you’ve got to take some inputs with a “grain of salt.” I think you’ve already seen this, and I think you are recognizing this. Anyone who gets overly enthusiastic about one treatment, or bashes another one, has probably got some bias they are conveying. From your last posting, it appears that you are prepared to deal with that.

You already sound like you have come a ways up the learning curve, but nonetheless, I feel that there is one or two books which are outstanding references…not just for before treatment, but also for after. If you haven’t already bought this, I would highly recommend Dr Patrick Walsh’s Guide to Surviving Prostate Cancer, which is readily available via online booksellers.

You’ve already mentioned that you are looking at robotic surgery. Laparoscopic surgery is not a euphemism for robotic surgery (as was suggested in an earlier response). Laparoscopic surgery is a minimally invasive technique which may be done either manually or with the assistance of a robot. You are probably also aware that “open” surgery is another method. Surgery is always for cases in which the surgeon and patient have high confidence that the cancer is “organ confined.” If there is reason to believe otherwise, then surgery will typically not be the first or best choice. Unfortunately, it’s impossible to know conclusively…one has to understand the odds and use them to make an informed decision. There are look-up tables based on case history for this purpose...the Partin Tables.

If you do go with surgery, the number one guidance I or anyone could give you is to find a very experienced surgeon in whatever technique he uses. There is a learning curve to this very complicated surgery, and studies have shown that more experienced surgeons have better overall results than less experienced surgeons. Seems like common sense, but really important.

Let me try to address your questions:

Quote:
Originally Posted by Lido View Post
1. Based on the numbers above, how quickly do I need to commit to a treatment plan?
Don’t rush urgently into any treatment. You numbers are such that you don’t need urgent movement. I would say you need to move deliberately down a decision path. I would encourage that you explore all possible treatment options so that you don’t second guess yourself later. Some of them may fall by the wayside quickly for one reason or the other.

Quote:
Originally Posted by Lido View Post
2. I have never had surgery before. I wanted to know what the first two weeks are like after surgery. Can I manage these weeks alone or do I need to have someone help? If I need help, how much help?
Lido, this is tough to answer. From your question, it sounds like you are solo. I had robotic surgery, and my post-surgery was incident-free, and so I didn’t really NEED a lot of help. It is major surgery, and you don’t feel great for a while. (The minimally invasive surgery recovery is much faster than open surgery recovery…you probably already knew that.) You are not supposed to drive, at all, while wearing the catheter (did you know about the catheter?) for the first week. I did drive a short distance once or twice. If you can get someone to stay with you and help you, it would be a big help.

Quote:
Originally Posted by Lido View Post
3. Do you recommend anything I can do physically, mentally, and so forth in preparation for the surgery so that recovery is, at least, less traumatic?
Yes, absolutely. You mentioned you are in relatively good shape. Being as physically fit as possible before surgery will help with your recovery. After initial diagnosis, I was in sort of a “funk” and exercised very little, but once I realized I wasn’t going to die (I really knew very little about PC in the first few days/weeks) and once I made my decision for surgery, I exercised regularly and rigorously up until the time of surgery. Before diagnosis I exercised maybe 3 days per week, after I got out of my “funk”, I was going 5 or 6 days per week for longer periods. I really believe it helped. My recovery has been excellent.

Quote:
Originally Posted by Lido View Post
4. Any advice for the days (and nights) immediately following the surgery?
I stayed home from work for 3 ½ weeks (after a mid-week surgery). Most men have significant loss of continence immediately after surgery (after catheter is removed), and then recover slowly & steadily from there, but it takes time. Almost all men wear some “absorbent pads” in their briefs to catch the leaking pee during this period. You will need some time, before a lot of going out in public, to get accustomed to using pads. In the 2nd half of my time off of work, I actually did a lot of work from home, but I was still gaining confidence on using pads before going back all day to work.

Back in September, someone else on this site asked me for how I came to my treatment decision, and so I wrote a lengthy reply which I will also share with you. I chose surgery, but that might not be the best choice for you. I wrote out my thoughts leading to my decision just to help share the decision-making process that I used. I wouldn’t encourage you or anyone else to duplicate my process, but it might be helpful to read about how someone else navigated the waters. Here’s the link to that posting: http://www.healthboards.com/boards/showpost.php?p=4085673&postcount=8

This site has a very good “Advanced Search” tool, I also wanted to point out, if you can narrow down to some key words. There are lots of collective experiences and case histories in the old threads which exist here.

Hopefully this will help you get a little further down the road. Feel free to come back with more questions as you continue to digest info (which often feels like drinking from a fire hose when at the stage you are at).

best wishes…

Last edited by kcon; 02-12-2010 at 12:09 PM. Reason: clarify

 
Old 02-12-2010, 06:37 PM   #7
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Re: The first two weeks after surgery

Kcon,
Thank you for the time you took to address my concerns, both stated and un-stated. I ordered the book you recommended this evening. I am currently reading another book or two on the subject as well.

I appreciate the distinction you make between urgency and moving deliberately. I have had difficulty remaining deliberate when I experience so much apprehension.
The path to the choices I have to make is somewhat new to me. I am by nature, a private, highly independent person.

For the first time in my life I am asking for a second opinion from a doctor who was recommended by a friend. I have sought counsel from trusted individuals, not on treatment choices, but on how to manage the uncertainty, and on how to determine the best choice of treatment for myself. It is because of a friend that I found this website and mustered the courage to post my questions.

Like you, I believe that each person must determine what is best for themselves given the state of the technology and the skills of the practitioners. It is not an easy choice, and requires some form of due diligance.

For the first time in my life I am asking questions of my insurance provider and have spent time with the HR department at work in order to understand such topics as State Disability Insurance and FMLA.

These are all uncomfortable tasks, and yet can't be overlooked. And, in spite of the likelihood of a positive outcome, I am preparing to document all the necessary information for my sons should anything happen to me - insurance information, bank accounts, 401 K's, IRAs, and so forth. Just seems prudent and probably overdue.

Thank you for the advice on exercising prior to surgery. As you described, after the discovery of the cancer, I have been in kind of a funk. Less sleep at nights and a mostly subtle undercurrent of tension during the day have left me somewhat exhausted. I will begin tonight to get my back on my exercise regimen which primarily consists of walking and riding my bike. That may help with sleep.

Thank you for talking about the pads and how it would take some time to get comfortable in public while I re-train my body. As a result I have asked the IT department of my company to set up VPN on my laptop so that I can work from home during recovery if I choose the surgery option.

I didn't mean to mislead by my question of whether I could recover on my own at home. My youngest son lives with me still but I see him for about 40 minutes a week as he attends to his college studies, job, and social life. He can help take care of many things, but I am not desirous that he take care of my personal needs. I don't kow.

Thanks again for your advice, for offering your experience, and your considerable compassion.
-Lido

Last edited by Lido; 02-12-2010 at 06:40 PM.

 
Old 02-13-2010, 09:58 AM   #8
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Re: The first two weeks after surgery

Quote:
Originally Posted by Lido View Post
My youngest son lives with me still but I see him for about 40 minutes a week as he attends to his college studies, job, and social life. He can help take care of many things, but I am not desirous that he take care of my personal needs. I don't kow.
I was able to fully take care of all my personal needs by myself. Beyond personal items, in the days immediately after surgery, you might find yourself making a short list of things you'd like him to do for you when he gets home...moving things, getting things, etc. Things you might not feel up to doing (or shouldn't do) by yourself.

Feel free to post other questions here as they arise in your mind. You can get as detailed as you would like to get. I'd be glad to provide answers and insight from my experiences.

Old Chinese proverb (Happy Chinese New Year, by the way): If you want to know more about the road ahead, speak to those on the return route.

 
Old 02-13-2010, 09:09 PM   #9
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Re: The first two weeks after surgery

Again, you've helped ease my mind about being home during this uneasy time. Two questions arise - one related to this topic and one more related to prostate cancer in general.
1. Did you buy any special clothing. One post I read talked about balloon pants - I assume these are some form of loose fitting pants so that the bag is less of a problem. Did you buy a size larger than normal or anything like that. I've also read somewhere that briefs are more helpful than boxers while the cathetar is in place.

2. Why does prostate cancer cause lower back pain? I've tried to research this topic but have not been able to get an answer. Does the prostate press against nerves in the back? I'd hoped you might have an answer, or maybe this is covered in Dr. Walsh's book.

I guess I have a third question.
I am concerned about my emotional state dropping out from under me as it has in the past when I have gotten the flu or been otherwise layed up for a few days. I am not sure what to expect this way if I am managing things for 6 weeks or more. I've also read some posts where it seems that some men become a bit more hostile from, I suppose, dealing with the challenges that may arise from treatment and recovery. I am concerned that I might have a lack of insight into my own state of mind during this time. Can you give any advice on keeping stable, not offending others, and in general, managing the emotions that might set in?

I like the quote at the end of your post.
Thanks
-Lido

 
Old 02-14-2010, 06:24 AM   #10
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Re: The first two weeks after surgery

I'll give my best shot at answers:

Quote:
Originally Posted by Lido View Post
1. Did you buy any special clothing. One post I read talked about balloon pants - I assume these are some form of loose fitting pants so that the bag is less of a problem. Did you buy a size larger than normal or anything like that. I've also read somewhere that briefs are more helpful than boxers while the cathetar is in place.
I bought nothing new. The catheter, remember, is only in place for a week (for robotic surgery) or two (for open surgery). I wore "warm up pants" or "sweat pants" (the nylon type) every day, and they were fine (the baggy-ness is good for the catheter bag). Briefs are a requirement for after the catheter is removed because they help to hold the "absorbancy pads" in place (there is also an adhesive on the backside of the pads which sticks to the briefs). For me, I wear brief anyhow, so nothing new was needed. (BTW, during the catheter week, I went "commando" under the warm up pants.)

Quote:
Originally Posted by Lido View Post
2. Why does prostate cancer cause lower back pain? I've tried to research this topic but have not been able to get an answer. Does the prostate press against nerves in the back? I'd hoped you might have an answer, or maybe this is covered in Dr. Walsh's book.
I don't know off the top of my head. Not something I ever really looked up. I have a herniated disk (L5/S1) in my lower back which always bothers me to some varying degree, and I've learned to basically ignore it. Perhaps others have knowledge/info to share on this question.

Quote:
Originally Posted by Lido View Post
I guess I have a third question.
I am concerned about my emotional state dropping out from under me as it has in the past when I have gotten the flu or been otherwise layed up for a few days. I am not sure what to expect this way if I am managing things for 6 weeks or more. I've also read some posts where it seems that some men become a bit more hostile from, I suppose, dealing with the challenges that may arise from treatment and recovery. I am concerned that I might have a lack of insight into my own state of mind during this time. Can you give any advice on keeping stable, not offending others, and in general, managing the emotions that might set in?
Trying to answer this, I think I should start with the comment that everyone is different. My personal emotional low point was the first few weeks after diagnosis. I knew little about prostate cancer other than it had the word "cancer" in it's name, and that was very scary. Thought it was going to lead to an early death. It took some time, but as I learned more and more I realized that the vast majority of men are successfully treated and get on with their lives.

So, after that initial low point, there was a slow, steady climbing out of the emotional hole I felt that I fell into as I learned more, then started making decisions with confidence (using what I had learned) about my own treatment path. I feel strongly that the research one puts into a treatment search is valuable to give one's self the confidence that you are doing the right thing, but once that decision was made, I my recovery had started (even before the treatment started). I would add that while I do feel (10 months after surgery) that I am definitely "getting on with my life" now, the "C-word" has a new place in the back of my mind...sort of like my herniated disk.

Telling people about my cancer was something I gave some thought to...this is another thing that different people would certainly handle differently. I had a set of friends who I told because I wanted them to hear it from me rather than to hear it from someone else. Beyond that, I really didn't tell too many people. At the same time, I didn't really go out of my way to hide it. I knew folks at work would hear about it (I told a couple of people...I basically told them I wanted them to hear it from me, and that I thought word would get around). Word did get around but I would say everyone was courteous and thoughtful in their comments.

Hope this helps. best wishes...

 
Old 02-14-2010, 05:15 PM   #11
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Re: The first two weeks after surgery

Thank you again. I have more to say, but that seems enough at the moment. I have to process things for awhile. I appreciate the good wishes and good advice.
-Lido

 
Old 05-16-2010, 02:04 PM   #12
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Re: The first two weeks after surgery

I stumbled across this site, while searching for information about the gleason scale, which is a new word to my vocabulary. For the past 4 days my mind has been in a whirlwind, after receiving the outcome of the much anticipated 12 point prostate biopsy I had a few weeks ago. I received a call from a Nurse the next day to get the ball rolling, she explained how the gleason scale worked and what my results were (7), of course at the time I did not know the right questions to ask, however I will be receving a packet in the mail and then it was explained that appointments would be set up to interview with a Surgeon, to go over removing the prostate, and a Radiation Doctor (can't remember the thier proper titles yet) to help me make my decidion of the course of action.
I've taken some notes on the thread between Kcon and Lido and have already found answers to some of the questions that were swirling around in my brain, as well as much more to think about. I've started a spread sheet, formulating questions, and started a glossary of all the terminology. Since finding out that I have PC it has trumped everything else in my life, I have a loving supportive wife that I'm sure will help make this journey a lot easier, and I am thankful for both of you for sharing your experience publicly, I look forward to reading more and sharing as well, in hopes of helping others as it has helped so far.
There is one big question that's going to come up, I try to do my very best to live my life according to Gods laws, and based on that, I will have to insist on bloodless surgery. What I've found out so far is using the Da Vinic method (robotic) of surgery, the blood loss is only 109ml, for this operation, that does not sound like a lot of blood?

Thanks for any help from those returning from the road I'm about to go down!
J.Kille

 
Old 05-16-2010, 11:22 PM   #13
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Re: The first two weeks after surgery

Hi J.
Welcome to the PC club. You have found a good site to explore prostate cancer. I received a lot of good advice from KCON and IADT3since2000 while I was investigating. There are also others on the board who provide equally extraordinary advice and clear, knowledgable explanations.

Consider buying or borrowing two books: Dr. Patrick Walsh's 'Guide to Surviving Prostate Cancer', and 'A Primer on Prostate Cancer: The Empowered Patient's Guide' by Stephen Strum and Donna L. Pogliano. Both books are highly regarded and will help you understand this new world.

Ask lots of questions on this board and with your doctors; don't be intimidated.

Regarding your question about the amount of blood loss with laparoscopic surgery (DaVinci method); this was the type of surgery I received. The blood loss from surgery was very limited for me. Less than a quarter of a cup (about 3 1/2 ounces. I did not need any kind of transfusion. I credit this minimal loss of blood to my surgeon as well as the method. I also want you to know my recovery has been pretty good so far; just takes time and a little effort.

My surgeon is highly regarded in Northern California where I live. I was fortunate to have my choice of two very fine surgeons. I chose my surgeon because he was more confident than the second surgeon that he would save the nerve bundles on both sides of the prostate in my circumstance (this was important to me). Everything I read suggested that one of the primary factors for a successful surgery, or for that matter, radiation treatment, is the doctor performing the procedure. Please be serious about determining the right treatment for yourself and then choosing the right, qualified person to do it. As you read through some of the threads on the Healthboards, you will notice that there are some folks who travel great distances in order to attain the best possible outcome. I would recommend the same consideration for yourself if necessary.

Keep asking questions. Make a list of questions to ask your Urologist/Oncologist and Radiation/Oncologist. Being an informed consumer in these matters is a must. Being informed will help you and your wife make the best possible choices. You will sleep better; you and your wife will be able to talk to each other more easily about issues we sometimes avoid. You are fortunate to have a loving, supportive wife. Please be patient with each other as you work on the issues confronting you both.

Good luck. I hope the best for you and your wife.
-Lido

Last edited by Lido; 05-17-2010 at 08:29 AM.

 
Old 05-17-2010, 09:08 AM   #14
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Re: The first two weeks after surgery

Quote:
Originally Posted by Lido View Post
Hi J.
Welcome to the PC club. You have found a good site to explore prostate cancer. I received a lot of good advice from KCON and IADT3since2000. There are also others on the board who provide equally extraordinary advice and clear, knowledgable explanations.

Consider buying or borrowing two books: Dr. Patrick Walsh's 'Guide to Surviving Prostate Cancer', and 'A Primer on Prostate Cancer: The Empowered Patient's Guide' by Stephen Strum and Donna L. Pogliano. Both books are highly regarded and will help you understand this new world.

Ask lots of questions on this board and with your doctors; don't be intimidated.

Regarding your question about the amount of blood loss with the laparoscopic surgery (DaVinci method). This was the type of surgery I received. The blood loss from surgery was very limited for me. Less than a quarter of a cup. I did not need any kind of transfusion. I credit this minimal loss of blood to my surgeon as well as the method. I also want you to know my recovery has been pretty good so far. Just takes time and a little effort.

My surgeon is highly regarded in Northern California where I live. I was fortunate to have my choice of two very fine surgeons. I chose my surgeon because he was more confident then the second surgeon that he would save the nerve bundles on both sides of the prostate in my circumstance (this was important to me). Everything I read suggested that one of the primary factors for a successful surgery, or for that matter, radiation treatment, is the doctor performing the procedure. Please be serious about determining the right treatment for yourself and then choosing the right, qualified person to do it. As you read through some of the threads on the Healthboards, you will notice that there are some folks who travel great distances in order to attain the best possible outcome. I would recommend the same consideration for yourself if necessary.

Keep asking questions. Make a list of questions to ask your Urologist/Oncologist and Radiation/Oncologist. Being an informed consumer in these matters is a must. Being informed will help you and your wife make the best possible choices. You will sleep better; you and your wife will be able to talk to each other more easily about issues we sometimes avoid. You are fortunate to have a loving, supportive wife. Please be patient with each other as you work on the issues confronting you both.

Good luck. I hope the best for you and your wife.
-Lido

Lido,

Thanks for the quick response as I am eager for feedback, I will be heading for the book store today, my wife loves to read, so this will be a good tool that we can learn from and share together. I found some animated videos on the internet showing the DaVince method that we both viewed and it really helped us to get a clear picture of how everything works, I hope they were correct, at least they seem to make since to me.

Yes I agree with you on the subject of saving the bundles of nerve endings, they seem to be the key in minimizing the collateral damage from removing the Prostate and without them it would surely affect ones quality of life. I am a very active person and have planned on riding my bicycle from NJ to California as soon as I retire, and I'm not so sure I could still do that without saving them nerve ending!


This might sound strange but I am actually excited as I am stressed over this whole ordeal. Of course I love learning new things and most of the time I jump in head first when something new has come my way, except this just feels strange! Do you know, does life ever go back to normal or is there some kind of life long maintenance over and above the normal stuff?

Thanks JK

 
Old 05-17-2010, 07:39 PM   #15
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Re: The first two weeks after surgery

Hi JK,

Welcome. I've read your note, and am sorry to hear about your recent finding of prostate cancer (PC). I'll give a few quick comments here, but I would suggest that you start a new thread all your own rather than continue to build on Lido's. I might suggest providing a little more info on your case background might be a helpful starting place, if you'd like some feedback...such as your age, PSA history, biopsy details (was your 7 a 3+4 or a 4+3; how many core samples had cancer, and what % of cancer was found in each), and whether there were any DRE findings.

The books mentioned by Lido are excellent, but you might have trouble finding them in a bookstore. If so, they can be ordered online via popular online booksellers.

Your last paragraph, below, I found interesting...wondering about life getting back to normal. I'll give a short answer here, and maybe we could embellish on it a little later, but I think that one should hope that your case is such that it will eventually moved to the back of your mind and stay there in a maintenance mode...it will probably never go away.

As you get some specific questions, post them to your new thread.

-kcon

 
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