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My day of truth arrives on December 12th......... Anxiously waiting

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Posted 12/9/2006 5:51 AM (GMT 0)
To my fellow prostate cancer survivors............

My day of truth is rapidly approaching this Tuesday, December 12th in the early AM. I am going to have a prostatectomy performed via the DaVinci Robotic at Jackson Memorial Hospital/University of Miami Medical Center. It is now just over 7 weeks since first being diagnosed. All in all I've handled this all very well, but as the BIG day approaches I am growing more anxious, but remain confident. I have a surgeon who has performed hundreds of procedures using this new technology and is supposed to the be an ace at it. His name is Dr. Raymond Leveilee. I met with him three weeks ago and I liked him. I rejected other surgeons because they either a) lacked sufficient experience with the DaVinci, b) showed insufficient sympathy for the ED issue or c) Couldn't schedule me for several more months. I have too many people to thank for their words of encouragement and advice, including the people on this board. Yes, I told everyone that I was scheduled for Feb 6th, but I was not prepared to wait that long to have something done. When I found the right surgeon who was prepared to do it sooner, I jumped at it.

It has been a real rollercoaster ride since my diagnosis date of October 18th. Everyone from my family, friends and friends of family and friends have been great. I received alot of tremendous feedback that has helped me get to a point where I had enough confidence to move forward with my decision-making process. All had remained peaceful until early this week. about 4 weeks ago one of my dearest and closest friends down here in South Florida began complaining about a low-grade fever and symptoms of a cold and flu. He became steadily weaker and couldn't seem to shake the symptoms. Between doctor visits and blood tests they became suspicious of unusual activity from his liver. Among other tests, they performed a biopsy on his liver a week ago. To our total shock, he was diagnosed with cancer of the stomach, esophagus and liver. His diagnosis has adversely affected me even more than my own case of cancer! I am reminded once again how fleeting life is and how life can change on a dime without any warning. After all, this is the very same person who only a few short weeks ago was feeding me all sorts of information about cancer now had to face it himself, but under far worse circumstances. I was totally crushed. I spent many a day with him in the hospital while we awaited the test results. I don't know whether to consider myself fortunate that I am not in his position right now. The first thing I told him was to join this site.

I wanted to post this thread over a week ago. But I hesitiated to do so because I was not sure things would progress as planned. I went to my primary physician on Monday to have a routine pre-surgical physical and my primary doc ordered me to have a bone scan. I'd been asking about a bone scan since the first week and nobody seemed to think it was necessary since my 3+4 Gleason and 2.3 PSA didn't indicate it was necessary. However, when I started complain about some pain in my lower back and hip joint, the doc wanted to be absolutely certain before proceding further. I took the bone scan this AM and do not as yet have the radioligy report. I will have to wait until Monday. I am sure all will be ok since the pain is more centered in my hip joint and is a direct result of playing too much tennis on hardcourts where my body takes a real pounding 3 or 4 times a week. I took some time today to write another email to the surgeon asking him about homecare and such. I also wanted to ask him about taking some viagra this weekend for one last fling with the ole prostate. To my surprise I got an auto-reply that he was going to be out of town and not returning to Miami until the day of my surgery! I admit to being a little let-down, but hell, the guy deserves a weekend off, right? The surgeon has been great about returning emails up to this point, so I guess he's off the hook.

On Tuesday I went to Gilda's Club in Fort Lauderdale. This club was created by the Foundation of Gilda Radner of Saturday Night Live fame who died of ovarian cancer a while back. I spoke the counselors there and really liked the whole atmosphere of the place. The support group meeting was very helpful.

Thursday I went to the nurse practitioner at Jackosn for pre-surgical prep. I was given the word on what I needed to do to prepare for the surgery. I was surprised that they have me booked for 2 days in the hospital. I had falsely assumed I would be leaving the hospital if all goes well in one day. I know there have been posts here about things to prepare for in the hospital, but I don't have the time or patience to research it again. If anyone can give me some advice, any advice, I'd really appreciate it. I admit, I am getting a little jittery and anything anyone can say will be very helpful and accepted with much gratitude.

In the meantime, I remain confident, but uncertain as to my future post-surgery. Of course, first and foremost is to get the cancer, all of it. But I am scared about the continency and ED issues. I'm guess I'm going to have to leave that in the hands of God and the surgeon, won't I?

I promise to keep everyone informed as things progress. If I can get my laptop into my hospital room, I'll post from there. People, this the first surgery on my body in my 56 years of life. This is a BIG day for me as I am sure it was the same for all of you. I am counting on your words of support and encouragement.

I'll be checking in to see the responses.............

Hugs, Jay

Posted 12/9/2006 6:06 AM (GMT 0)
Hi Jay,

We are lagging you in this process, but hope you will continue posting your journey for us following in your footsteps.

That scares me that you had to have a bone scan with 2.3 PSA! I was wondering about that, and all the doctors have said "not necessary". but hearing a story like yours does make one think about it! we haven't had any bone/joint pain, but it does give us pause for thought. Please update us on your bone scan if you have the time.

So sorry to hear about your friend with the liver cancer. :(

I wish i could answer your questions on pre-surgery prep, but we aren't over that hump yet.

Take care, best wishes and thoughts are with you!

Tanya and Ken
Posted 12/9/2006 1:24 PM (GMT 0)
Jayman - we're all here in spirit with you, as you know! I'm sure everyone else will be along with a list of things, too. We took baggy exercise pants and an extra-large T-shirt for going home. You'll just be in a gown while you're there.

Try to get your prescriptions filled ahead of time - when you go home, it'll be a bit of a painful ride and then off to bed!
The catheter and bag were our scariest fear - but it's no big deal. We stocked up on surgical gloves to avoid any bacteria (which they say to be careful of at the tip of the tube). Nurses will instruct you on the Foley before you go home.

You may (or may not) come out of surgery with a bit of a sore throat (from the tube) and dry mouth/lips. Sip water and ice as you can. Husb. was pretty much out of it for several hours. A few waves of nausea and bladder spasms. They have drugs for both those problems.

Because it was just the two of us, the first few days at home was "clothing optional." No undies, just a big shirt (or a robe). Small trash can with handles to keep the Foley bag upright and to carry around.

We, too, were jittery - it's OK to worry and be nervous and eager to get it over with, too. You'll be just fine - you're prepared. Plus, sounds like you have a great support system in place with family and friends.

Yes, we all worry about the continence/ED issues. Each person is different in the outcome, but you have to believe you'll be fine, there, too.

Good luck!
Posted 12/9/2006 2:10 PM (GMT 0)
Hi there Jay! Our prayers are with you on Tuesday!  So glad you're not waiting until February anymore.  By next week at this time you'll be feeling great and on the right side of your journey with PC, and looking forward to getting rid of your new friend "hang". Practice those kegals up to surgery in preparation for the ones you'll be doing after getting rid of "hang". Follow your doctor's directions to the letter is the best advice we can give.  Bob was told to not lift anything heavier than a phone book (ours is about 5 lbs) for 6 weeks and we listened.  I think following this advice made for a much more uneventful practically pain and complication free recovery. Will be anxiously awaiting your post op posts.  Also, so sorry about your friend's bad news .  . . . life is indeed precious. {{{{{{{{{{{BIG HUGS TO JAY}}}}}}}}}}} Linda & Bob
Posted 12/9/2006 4:46 PM (GMT 0)

Jayman,

Sounds like your in good hans in Jackson M!! I thing thats about the best hospital here in S. Fla. Yea, I live here too. In Lantana. It will be a breeze for you. The hardest part is the waiting.

Good Luck!!

Your friend Pete

Posted 12/9/2006 5:14 PM (GMT 0)
Hey there! tongue   "It will be all over before you know it". That was the phrase lots of people said to me before my Davinci surgery 10/12/06. It really was true and you will find that out also. My PSA 4.3 Gleason 6 raised to 7 after surgery 5 of 12 samples had cancer cells.  The worst part honestly is the anticipation of it all. You will have some discomfort after the surgery mostly the catheter and some soreness around your tummy. You will do just fine and when it is over stick around the forum and encourage others with you story. God bless you. You will be feeling a lot better in just a week from today. yeah
Posted 12/9/2006 5:21 PM (GMT 0)
Jayman,

Reading your post brought back me back to the same place I was at the week before my surgery. We are both the same age and both never had surgery much less been in a hospital. As you are my worries were not really with the surgery as much with the after effects. I am now 5 weeks post op and still somewhat concerned. The incontinence is still with me but it is now down to primarily stress incontinence. The impotence is still the biggest issue as I have yet to achieve an erection but the confidence I have in my urologist gives me assuarnce that it will come over time.

As to what to be prepared for in the hospital I think that from this forum you have gathered that there are differences among men but in general you will wake up from the Da VInci with little or no pain. I had none. It was amazing to me that when I woke up as was wide awake and not groggy. If when you wake up and feel like you need to urinate badly then that will be a bladder spasm. Thanks to this forum I recognized it when I woke up and told the recovery room nurse right away what it was and she quickly inserted a suppository and it went away right then. My urologist's protocol was no liquids for the first day and night. I did not understand that until I got up and walked for the first time and got sick of my stomach. The nurses said that it was common and if I had liquids on my stomach then I could have aspirated some of it and then pneumonia would set in. You want to do everything they tell you cause after surgery it is all about preventing complications. I am not sure why they scheduled for two days in the hospital unless they just wanted to get the insurance clearance for it so they would not have to call. The main thing for you to concentrate on is to get up and walk as soon as you can. I was so pumped I kept begging to get up but they would not let me until about 8 hours after the surgery. Make sure that you know all there is about taking care of the Foley catheter. They showed my wife and I a video on the hospital room TV and it helped a lot. While it is a nuisance you will find that the catheter is not that much of a problem. Just keep the tip of your penis clean and lubed and you will be alright.

I will be thinking of you this week. You will be on the other side soon and free of the monster that you have dealt with for the pass 7 weeks.

Good Luck!

Tamu
Posted 12/9/2006 11:18 PM (GMT 0)
Jay,

If you are in a house with just you and your wife then a nice robe left open will be the best thing for you to wear.  Curtis couldn't stand anything touching him with the catheter in so that worked out just fine...I always threatened to take a pictureof him, but wanted to live so I didn't!!  tongue

He used a small laundry basket to keep his large catheter bag up right...you can hang it off the side of the basket.  He found it was much easier to just use that bag instead of changing to the smaller one during the day cause he had to empty it more often.  So unless you have to go out to the doctors or some other placed the large bag is more convenient.  Don't forget the small laundry basket.

I did buy him some very large sweat pants with a draw string waist, but he didn't wear them unless he had to.

I hope this helps.

 

Posted 12/9/2006 11:20 PM (GMT 0)

Best of luck to you JayMan.  As all those who have experienced it say, you will soon be on the 'other side' and on the road to recovery.

Regards,

Bill

Posted 12/10/2006 2:14 AM (GMT 0)
Hi Jay,

We were all just as anxious about the surgery as you now are, and that is perfectly natural. What I can say to give you some confidence is the actual surgery is a non-event. I can only remember entering the OR and getting a few reassuring words from my doctor, then I was being gently awaken by the nurse in recovery. That is the entire story of my DaVinci procedure with no details left out. 30 hours later I was in my car heading home.

There are other common sense things to consider; no big dogs in the house while you have the Foley tube. Buy your Depends or other pads now. Bathrobes are the perfect attire for the 5-8 days you have to deal with the Foley tube. Have 2 soft pillows; one to grip to your stomach before you sneeze or cough, and one to sit on while you're at the computer posting us on your post-op recovery.

So try not to get too freaked out as my kids would put it, and work on your Kegel exercises. We're here when you need us. Good luck.

Glen
Posted 12/10/2006 2:22 AM (GMT 0)
Good Luck-- hang in there

Posted 12/10/2006 3:06 AM (GMT 0)
Oh by the way if you have a recliner so much the better or at least a soft couch that you can lean back on.  You don't want to be sitting straight up cause you will be sore...like Curtis said...it's like sitting on a ball all the time.  He sat on the soft couch with his feet up on the coffee table to take some strain off that area.

Posted 12/10/2006 5:39 AM (GMT 0)
Just to give you another perspective, because everyone feels differently about all this . . . hubby and I seldom lounge in anything but daytime clothes. He never even thought about staying in his bathrobe, but rather dressed in comfy track pants each and every day after surgery. He chose to use the leg bag when he was up because it allowed him to wear his track pants comfortably. Nights he changed to the larger foley bag but even napped during the day with the leg bag, just remembering it needed emptying more often.

What it boils down to is whatever you are most comfortable doing. Keep in mind there is occasional leakage aroung the foley tube so some padding may be in order if not uncomfortable.

The day he came home from the hospital we even ventured out for a coffee at the local coffee shop.

Good luck, take care and let us know how you are doing . . we are here for support and to help you with any questions.

;o) Linda & Bob
Posted 12/10/2006 6:05 AM (GMT 0)
Wow,
With so much wonderful stuff already having been said, all I can say is you sure aren't alone! My God bless and keep you safe. Prayers are with you and with your friend as well.

swim
Posted 12/10/2006 7:27 AM (GMT 0)
I don't know what to say........... your support is overwhelming and I thank you from the bottom of my heart..... just reading your posts makes me feel better. It is now just after 2AM Sunday morning and my confidence is returning thanks to you all.

 

Tomorrow I will go to Target and pick up a bathrobe. Some new pillows are a good idea as well. The terryclothe robe I have now is too heavy. I did invest in some loose-fitting flannel sleeping pants that are oh-so-comfy now that the weather has turned "colder" in South Florida....... hell, it dropped "way down" into the low 60's here tonight!!!!....... brrrrrrrrrrrrr. Sorry for the tongue-in-cheek remark, it's my nature to joke...... I only thank God that I'm not up north right now. My sister is coming down here for 6 days from Long Island where the temps were in the low teens today.... poor girl.

 

One thing I didn't mention in my post is the fact that I live in a 3-story townhouse. The walk up to the master BR is no problem for me when things are normal. But, with the Foley and my general condition I am concerned about this. I am thinking of renting a hospital bed for the first week of recovery and sleeping in my living room where the walk to the kitchen and bathroom is one short flight of stairs. The other question I forgot to ask was since I am single (divorced) and asking my son or sister to help with some "personal" issues is not practical. Should I hire a nurses aide for the first few days??? Anyone with any thoughts on that, please let me know.

 

Another thing... nobody mentioned anything about Kegals to me prior to surgery. What are Kegals????

 

I will follow the instructions on diet to the letter. I stopped taking some meds as instructed, no aspirin, tylenol-products, no vitamin E.... I did ask the doctor a question if it was ok for me to take viagra for one last fling this weekend, but it was too late as he had already gone for the weekend. Can anyone let me know about this? As for lubrication and wipes for the Foley, I assume baby wipes and petroleum jelly is ok... yes?

 

That's about all for now.... more to come later.

 

Love you all very much.

 

Jay

Posted 12/10/2006 1:23 PM (GMT 0)
Hi, Jayman. I'm posting this link for you to read if you have time. It was our doc's manual and became our Bible - and will explain everything you need to know for pre- and post-op da Vinci. With the caveat, of course, that first you follow your own surgeon's orders to the letter. This link will walk you through kegels and how to handle the Foley. What to expect post, etc.

http://www.prostatecenterofaustin.com/Docs/davinci.pdf

Regarding the lubricant, you'll probably be advised to use a triple antibiotic ointment at the penis tip and around the tube. Just keep adding ointment 3-4 times each day. There could be some blood around the tip, so don't be alarmed. Once it dries, however, it turns to what some describe as glass shards. The ointment keeps that from happening.

You know, everyone responds differently to post-surgical recovery. My husb. would have required an aide. He also had some major scrotum swelling and pain, which can sometimes happen. Again, nothing to be alarmed about in most cases. Others here have been back up and at 'em within hours. If your sister is staying with you, that should work out fine. You'll probably be able to handle the Foley yourself, along with personal care. They'll advise you to (again, probably) wait about 48 hours before you try to take a shower. The incisions will be covered with butterfly strips that will stay in place even when wet. Those you can leave as long as you wish. We, too, just kept the big bag on except for the trip for removal.

We're all looking forward to seeing you on the other side!
Posted 12/10/2006 2:15 PM (GMT 0)
Rather than baby wipes, we used the alcohol swabs or wipes - they can be picked up at the pharmacy and come in handy individual use packages just like in hospital. This would kill any germs present, which I don't think a baby wipe does. Just be really careful not to handle the very tip of the tube with your fingers as this could introduce bacteria. As the nurse said to hubby, you have a direct opening into your bladder here.

My own personal feeling is the hospital bed is probably not necessary (they are not that comfortable anyways). Stairs shouldn't be an issue. Poor old foley you just pick up by the handle and carry up with you. A comfortable sofa or recliner on your main level can suffice during the daytime. Remember, you won't be feeling ill, just will need naps during the day for the first while. Wish I could help you with your viagra question, but I really don't know. I'd say the night before surgery wouldn't be a good idea, but can't imagine it being harmful . . . .say, tonight, but that's not a medical opinion in anyway.
Posted 12/10/2006 2:38 PM (GMT 0)
Poor guy isn't headed to his demise...it's surgery...surgery people have every day of the week nearly! Foleys are a pain but not intollerable. Staples feel better coming out than while they're in and gettin up and down from bed works better by rolling slightly to the side. A little triple antiobiotic on the tip a couple of times a day should keep your pride and joy from gettin sore Jay, and water is your friend....so is walking. We get sorer sitting doing nothing so plan to get moving asap.

Jay, you're young! You can handle a minimally invasive abdominal procedure. You won't need a dozen handicapped devises nor special chairs, beds or anythig else. Doctors are doing patients a huuuuuuge injustice by not explaining what a minimally invasive surgery is. Either that or we, as a population, need to get a grip!

If the word cancer were taken out of the equasion I really think a prostatectomy would be easier to overcome. I've noticed so many men make amazing progress as soon as the final pathology is reported, regardless of the outcome. That unknown is sure a creepy fellow, eh?

Not trying to be rude Jay....but it's no nearly as painful as you imagine and certainly not debilitating. In fact, peeing and ED will be your biggest pains most likely, not the surgery itself. You won't even be in the hospital long enough to flirt.

Be well,
Swim
Posted 12/10/2006 2:49 PM (GMT 0)
Jay,

Swim is right. Everybody is different to some degree but you will be able to get around and up the stairs without any problems. In fact, climbing the stairs will be beneficial to your healing. I personally wore the leg bag all day and I was out walking a mile on the third day after surgery. The more mobile you make yourself the better you will recuperate.

Tamu
Posted 12/10/2006 6:48 PM (GMT 0)

Jay,

It is 13 days after the operation (but who is counting) and it wasn't that tough.  The first week with the Mr. Folley was a new experience, I was the big bag fan...easy to manage.  I had it removed one week after the operation.  You improve very rapidly.  Off pain medication after around five days.

My "favorite at home outfit" was gym shorts. 

I am going to work 1/2 days from home during Week #3.  This group certainly filled in all the questions you have and makes this new experience managable. 

Thanks GANG.

JJK

Posted 12/10/2006 7:31 PM (GMT 0)
Thanks for all the info guys.... you are great!!!

I think it's because I have never had surgery before that this feels pretty wierd..... I don't want to pass it off too lightly, but in my heart, from reading the posts in here, I just know this is going to go smoothly before, during and after. What's the expression? "Hope for the best, prepare for the worst". I told my tennis buddies this morning I'll be back on the courts in a couple of weeks. It's the waiting that's the worst thing...... only a little more than 36 hours to go now!

Greenacres, thanks for that link to Dr. ***in.... that was really helpful. Very professional.

Jay
Posted 12/11/2006 2:37 AM (GMT 0)
Dear Jay ~   Take a deep breath and know you are going to be back with us ~ as quick as a snap! Positive thinking is definitely a huge plus in the recovery/healing process.   I’ve just re-read your postings since your diagnosis and you’ve come a long way my friend!   I am going to pop our personal thread:   “Our Journey”   Sharing is Caring …back to the top since you want feedback and it addresses so many of your questions and then some.   If you can pull just one thing from our pre & post… surgery do’s and don’ts… then it will be well worth every moment of documentation we’ve shared in our journey with prostate cancer.   Remember…Each person has to make the choice of treatment that is best for them and it will be the right choice!   Pulling various options from others to help you on your recovery/healing journey is what sharing is all about .   What is right for us may not be right for you but at least you see different options to pull from to make your journey a smooth one.   I know you are anxiously awaiting the bone scan results.   You are in a good positive frame of mind from reading your postings of yesterday and today.   Let these POSITIVES … carry you through the results and into surgery on Tuesday.   Get the prostate out and deal with any other issues that may come at you.   I’ve learned so much from jeb186chs *John…   take each day as it comes and deal with what has to be dealt with ~ with a positive attitude.   Worry causes stress and we know what stress causes…… nothing but negatives….   Please know we will “all” be right there with you ~   as you step on this new stepping-stone.   It’s a stone that so many of us have traversed   and we are here to help you on to this stone in your path to become free of prostate cancer.   We will be there for the next steps too!!   Each of us have a journey to share… because we care!   I feel honored to be a part of this wonderful family!   Thank you for sharing your journey with all of us.   I find it interesting to see where you’ve gone to a support group… Gilda’s Club.   This is so important if you don’t have a spouse/partner to converse with on a day-to-day basis.   Good for you for taking this step!!!   This is another positive in your corner!!   And sharing it with us will help others..   Amazing isn’t it ~ how certain stones are placed in our path ….and when we end up helping others because of this stone ~ we have to stop and think… hmmmmm this must be the reason why I’m suppose to be traveling this specific path.     Our heart goes out to you and your friend during this time.   Please know we care and our thoughts and prayers will be with “both” of you ~ every step you take on “your” journeys .   Our Hands are Reaching Out to You!!! (daveed)   We love you too!!! JayMan              “God Bless You”   It's a little prayer   ~   "God BlessYou" ...but it means so much each day, It means may angels guard you and guide you on your way.     In Friendship ~ Lee & Buddy   Though you cannot always see the bird singing, if you listen with your heart, you can always hear her song.
Posted 12/11/2006 4:46 AM (GMT 0)
Lee & Buddy... thank you so much..... I'll check out the older thread......

Jay
Posted 12/11/2006 5:36 AM (GMT 0)
JayMan--You've already gotten some terrific advice and I have nothing to add to what's already been said.  I just want to add my voice from the other side of surgery that you will do just fine. I was very anxious the morning of surgery, but it was harder on my poor wife, because she was awake in the surgery waiting room while I got to sleep thru the whole operation.  Take care and hang in there.  We're all rooting for you and will support you thru your recovery!! Take care and hang in there!

Tim

Posted 12/11/2006 12:53 PM (GMT 0)
Tim, you bet I've gotten some terrific advice. Thanks for your words of encouragement.... Jay
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