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Posted 4/4/2007 3:36 AM (GMT -8)

I have been an avid reader of this group for the last couple of months with a few comments. I am scheduled for DaVinci at the Cleveland Clinic on Monday, April 16. I am very emotional and must admit I am very nervous and scared even though I know on an intellectual basis that I will be OK. I know that everyone is thinking of me and in their prayers.

Question: Given what you now know, what would you do differently both before and after surgery?

Thank you in advance for and help/support.

Ed

Posted 4/4/2007 4:37 AM (GMT -8)
Ed,

I would not do much different. I continued to walk a lot and picked that up some in the last two weeks before surgery just to make sure that I was in as good a shape as I could be. I would not have carried a robe and slippers to the hospital. There is no way that you can really wear a robe with the catheter and the IV and the hospital that I was at insisted that I had to wear the non slip socks that they provided. I also would not have brought a book to read as I was up and walking too much all night long to read. I would have asked more questions about the post op period. I knew that I would remain on a liquid diet for the day after surgery but I did not know that for the first 12 to 15 hours after surgery I was not allowed even ice chips. That really got to me as the medication they gave me for the two bladder spasms I had really dried my mouth out. The pre op people did a good job and walking me through the anesthesia and what I could expect. It went exactly as they said. In my case I was expecting to wake up with some pain. They had told me that there would be some pain medication given to me just before I left surgery for recovery. When I woke up and was pain free I was so delighted that I just talked to everyone in recovery and was ready to get up and walk out of there.

I was also very emotional going in and apprehensive. The hospital where I had my surgery was a two hour drive from my house and I decided to drive that morning and this helped take my mind off of the surgery some. You will do well and will be up and about a lot fastrer then you can imagine.

Tamu
Posted 4/4/2007 4:52 AM (GMT -8)
Tamu:

Thank you for your quick excellent reply. A friend told me 6 weeks ago that my priorities should be physical, mental and spiritual. I am in the best physical shape ever - exercise 1 hour a day and also do a 1 hour power walk. The mental and spiritual are much harder for me. I believe I have done just about everything I can before the surgery so now the wait is very difficult. I cry alot and my mind projects all these "what if ideas". I have great support from my wife and children. Again thank you for your support.

Ed

Posted 4/4/2007 7:47 AM (GMT -8)

Ed,

Crying is a normal respose to surgery, both in anticipation and afterward.
The body experiences the trauma.  You cry.
Of course anesthesia and pain killers help. 
However, it doesn't change the fact that
    the parts of your body being removed have an "emotional context" to say the least.
Besides, the uncertainty of a cancer diagnosis is enough reason to cry.
Your numbers and proactive surgery suggest you will catch it and be cancer-free.

As for the spiritual side of this.  I personally just cry and know that
the Creator is holding me as a beloved child. 
As I cry, I try to remember that look on a laughing baby's face. 
Might as well join in with that joy as well when you complete that moment of tears.

I'm 7 weeks out and doing well.  I still cry about once a day when alone. 
Poignant tears of joy.  My physican says it is normal.
I have been teaching Bible Study for about 20 years now - at a Methodist Church.
(They were first perjoratively called Methodists for methodically studying the Bible....)
   For that "lick-your-finger-and-put-it-in-the-socket" experience,
     I recommend you just read a chapter or three of the New Teastament every day.
     Start in the Gospels and then move through the Epistles.
   For an over-arching emotional context,
     the Psalms cover almost every situation for crying, laughing, and praising.

Mentally,  I was not really prepared for going back to work incontinent.
I optimistically thought I would have control by then.
Yet, I am in week 7 and wearing pads as I work 8 to 12 hour days.
As I read and ask questions, the norm seems to be incontinent for months.
  I have told as few people as possible what the actual surgery was.
  My family, 4 people at work, 10 at church.
  Only these people know I am wearing pads.
I did not want to explain the male reproductive system to the dozens of people I interact with in church and at work and in the neighborhood.
I probably wouldn't change anything as I believe getting back to normal activity level is very important after any surgery.  WALK.  As soon as they let you, WALK.

When you walk - just keep in mind you aren't walking alone!  ICTHUS

Cedar Chopper

Posted 4/4/2007 8:05 AM (GMT -8)

Ed,

Tamu is the man! Listen to what he said! Ed, you are going to be FINE!! Many here have said it before. "The waiting is the hardest part!" You are in EXCELLENT HANDS! Cleveland Clinic is one of the finest well respected hospital in the world! I had my RP done at Hopkins after seeing several surgins in S.Florida and told myself, I am in good hands! Now is the time to just take a deep breath and know you have done all you could do and let your surgin and his team fix you up. Good bye cancer, hello the rest of my life! I know it's easier said than done but God has his plan for you and you have to trust in him, forget the "what ifs." Your stats are not bad and your chances for a 100% cure are very good! Hang in there my friend, you are right, you have a lot of people here pulling and praying for you!

Your friend,

Pete 

Posted 4/4/2007 8:16 AM (GMT -8)
Sween

Welcome to the club no one wants to join. This forum is composed of some of the nicest and most sincere people you can ever hope to meet. We are all a team. Everything Tamu has gone over is great info except I did have a robe at the hospital and was glad I did. Those open gowns are no fun for walking the halls. I simply put one arm in the sleeve and draped the other over my shoulder of the arm that had the IV. It just felt better having a robe and also warmer for all the hall walking I did the night after surgery. I really did not concentrate too much on the kegels before surgery. Now I wish I had spent more time. I am not doing too bad 5 month post op but still leak when sneezing or coughing.

All in all the surgery and aftermath were not that bad. I think like most guys I was very apprehensive about the surgery but pleasantly surprised at the outcome.

Best of luck and keep us informed of your progress. God bless

Posted 4/4/2007 10:25 AM (GMT -8)
DaVinci at the City Of Hope April 25, 2006 /So far SO Good ....
I think if possible the most helpful thing I had going for me was my Wife /Partner Ya think its happening to only you but being together for some 36 years we had Cancer together she was the rock that made the difference after nearly one year it still gets emotional and I can say there are still little reminders every now and again but all in all its good to be alive.
Kegels seem to have been the key before and after! And on an intimacy note the before was better but the practice afterward isn’t bad at all I wish you the best in your journey. time will be your friend. "The further away from surgery with good numbers coming back is what its all about” My Dr. told me that!
Posted 4/4/2007 12:06 PM (GMT -8)
Use plenty of lubricants on the catheter entrance site.
Posted 4/4/2007 12:19 PM (GMT -8)
I have tears in my eyes as I am trying to express my gratitude for all the wonderful responses. It is just overwhelming to me to know that there are so many fantastic people out there who are willing to help with this very traumatic event. I know intellectually that I have done everything I can including pushing the system very hard to get a biopsy. My numbers are very optimistic and I am at a well recognized hospital (Cleveland Clinic) but I still am very scared. Thank all of you for your information/support.

Ed

Posted 4/4/2007 1:01 PM (GMT -8)
Ed,
You have good numbers - ones that make the docs say "Well, young man, we get good results from guys like you"!
If you haven't read Dr. Patrick Walsh's book "Guide to Surviving Prostate Cancer" read it now or at least parts of it. He gives good info on what to expect after surgery. As will the guys & gals here.

If you're not a prayer then meditate...music, the out of doors, read...anything that makes you peaceful and puts your mind somewhere else for a while.

Really, you seem to have everything going for you...it IS a scary time but you sound like you're doing all you can, so it is what is. Let your family help you (families and friends are fond of saying "gotta stay positive"...not bad advice). We'll be here, too.

All the best,
Susan

Ed - what do you mean "I know intellectually that I have done everything I can including pushing the system very hard to get a biopsy."?
Posted 4/4/2007 1:36 PM (GMT -8)

Ed,

You have found the right place to ask your questions.  You will find wonderful answers here.  Everyone has been a huge help to my husband and myself.

My husband, Kurt, had the DaVinci 3 weeks ago today!!  And all is going well.  He too, feels a little disappointed that he wasn't one of the lucky tiny percent who walk out continent.  But that too is getting better. 

We took Kurt a light cotton robe to use while walking in the halls.  He was even able to run the arm with the IV in the sleeve.  The hose just followed his arm up the sleeve.  One thing that we found very helpful was a small pillow that fit between his knees.  We found it at Bed Bath and Beyond, but I have seen them at WalMart also.  It is a temperpedic pillow that sort of looks like a square hourglass.  It made sleeping with the cath easier for him. 

He also confiscated my neckpillow after surgery, which was fine, because I didn't sleep anyway.

Good luck to you.  With your scores, all should go well.  The hardest part is the waiting.  Once the surgery is over, you will feel a huge relief.  Just remember to take it slow!!  Courtney

Posted 4/4/2007 4:43 PM (GMT -8)

Ed:

I have no experience with surgery, but have heard that the Cleveland Clinic is top notch, so you will be in good hands.  We will be looking forward to hearing from you from the "other side" of surgery.

Good luck to you.

Dutch

Posted 4/4/2007 6:41 PM (GMT -8)
Good luck with your journey. We're here for support.

KW
Posted 4/4/2007 6:55 PM (GMT -8)
Hi Ed,

The only thing I would do differently is that when I woke up from surgery I was terribly thirsty. They gave me ice chips in a jug of ice water. As soon as they left, I chugged about half of the jug of water. I puked for the next two hours, wet then dry. Try not to do that...

Jim
Posted 4/5/2007 4:08 PM (GMT -8)
Pete said, "Goodbye cancer, hello the rest of your life". I think that says the most important stuff. The emotional and mental will come to you. Lots of support here and not one person thinks less of you because you are scared and upset. If you're not, you just don't know what's going on.

Keep Your Mach Up,

Bill
Posted 4/5/2007 5:32 PM (GMT -8)
Hi Ed.

Tim found out the surgery and recovery was much easier than he thought it would be. He said the biopsy was the worse part of the whole prostate ordeal.

One thing that I know Tim so much appreciated, was my staying with him overnite in the hospital the first nite. (In a recliner by his bedside.) There were tons of nurses scurrying about, but I seemed to have a sixth sense of what and when he needed something. And the first nite he was too groggy to really know what he needed. I kept an eye on his pain drip and catheter bag and made sure he was comfortable. I fussed over him and called the nurses when he required their assistance. He was so relieved to know I was there as his advocate. I took time off of work and was there most of his hospital stay but only stayed overnite the first nite.

Take it easy after you return home. You may feel much better after a week or so and start doing stuff your doc says not to do. Baby yourself for awhile. And get some comfy, loose pull-on elastic waist pants to wear around the house during recovery.

The one good thing about this whole ordeal is that Tim says he's peeing like a teen-ager again. LOL!
Posted 4/5/2007 6:08 PM (GMT -8)
Hi Ed ~ *Sween76,   I posted our special welcome on your 1 st Thread…. Back on February 5 th .   I’ve chosen to move it to this thread.   Why ~ because it is a Welcome that is heartfelt.   Usually 1 st threads that ask for a recommendation about a hospital or doctor are answered with the requested info.   Personal perception:   When a member reaches out (sharing more of themselves) as you see below in your signature below !!!! You’ve even added a personal name.       It allows us to know YOU!!!    It truly makes a difference… again ~ in my opinion!!!   Ed Age: 63 PSA 2.62 Negative DRE Gleason 3,3 Stage T1c Prostate 63 cm Cancer 5% in one of twelve modules DaVinci scheduled for April 16, 2007     Hi ~ Ed   *Sween76   &   Loved Ones,                   A    “Special”   Warm Welcome   to   You!   I know we can “all” make Your Journey smoother just by being here for you!   This is truly a great forum!!! ~ You have joined! You are now part our forum family ~ a group of wonderful individuals who are so willing to share their journey with you!     It helps “all of us” ~ to help you ~ if we know where you are on your path. So ~ Please stay with us and take our hand when you need it!   Keep posting.... OKAY!!   KNOWLEDGE IS POWER... and POWER conquers fear YOU MAKE THE DECISIONS… YOU HAVE OPTIONS… ~ and ~ Your decision will be the right decision for you!!!   We invite you to visit our personal thread listed in our Signature below… Our thoughts and prayers will be with you as you continue your search for answers…   In Friendship ~ Lee & Buddy   “God Bless You”  It's a little prayer   ~   "God Bless You" ...but it means so much each day, It means may angels guard you and guide you on your way.     (Direct Link ~ just click on the title below and a new window will open!   Reminder … click on the REFRESH icon once you get there) Helpful Hints for New Members... Hope this helps you! :) Updated 02-05-2007
Posted 4/5/2007 6:37 PM (GMT -8)
Hi ~ Ed,   Would we do anything differently before or after surgery???   No ~ Our Journey was exactly as we planed it.   I hope you have a minute to read it….   No matter what “surgery/treatment” one decides on….. Each Journey is the same but different.   Pull what you can from each that you read ~ to help make “Your Journey” smoother.   We are so happy you’ve reached out to all of us!!!   Helping Hands are the gifts we give to you!.   Thank you for holding on to us.      I want you to envision something….   “What if….. you aren’t here tomorrow due to an unforeseen incident?”   And you aren’t here for your surgery on the 16 th .   We are not promised tomorrow so live for today!   Let our strength move into your being to help you through this time period.   Start each day and end each night with the knowledge that you have researched your decision and it is the right decision for you!   Don’t allow those dark clouds to come in and take away the positive energy that you have.      The reply postings on your thread are wonderful!!!   I’ve re-read them and the smile gets bigger and bigger….   Seeing so many who were where you are right now only a few weeks, months ago ~ and to see the Strength…. They are so happy to share with you.   We all are.   Trust us to help you!!     This Journey is definitely traveled best with Loved Ones and Forum Friends.   Knowing where you’ve been and where you’re headed …. We Know!!!!!      Keep talking to us!   We will always be right here!!!!!       Don’t hesitate to cry….. it cleanses the spirit… and helps to relieve the “pressure” that builds us.   So ~ definitely let it out!!!   Continue your exercise up to the day of surgery!!!! If you have stairs… use them.   This strengthens the sphincter muscle and he’s a very important little muscle that’s going to work for you!!!     Ed ~ please don’t hesitate to ask for a mild sleep aid to help you sleep.   Sleep is so important even before surgery….. We did and it truly helped us!      Keeping you extra close in thoughts and prayers…. In Friendship ~ Lee & Buddy      *T his is your very own R ainbow and it’s sprinkled with S unshine * * ////////////////////// //////////////////////////// /////////////// /////////////////////////// * ////////// /////////////////////////// ///// //////////////////////// ///////////////////// ///////////// ///////// ///////////////////// ///////////// ////////// * ////////// *   T ruly      R e lieves      S tress  
Posted 4/6/2007 4:51 AM (GMT -8)

WOW!!! What a wonderful feeling as I reread all the postings. Yes I cry and I am scared but you have all helped me as I await the surgery. I have been asked to explain my comment "pushing the system". My journey is a little different from most so if interested just keep reading.

My local diagnosis (Physician and Urologist) was that everything was "normal" for someone 63 years old. I should just have another PSA in 12 months and not to worry. For whatever reason, my higher power (whom I call God) would not let me accept this result. So I went to the Cleveland Clinic and their diagnosis was that my numbers were "mildly suspicious" and a biopsy was ordered. The actual biopsy was no problem (mental anguish before was tough for me). The surgeon did the biopsy which was positive. I define the Cleveland Clinic as an "aggressive diagnosis" and local area as "status quo diagnosis". One other comment: It appears a +2.5 PSA if under 65 is the aggressive diagnosis for a biopsy (MD Anderson also says this)

I feel very fortunate that the Cancer was found so early and comfortable with my treatment choice of DaVinci. However, I am a worrier and still very emotional about all of this. Off to do my 2 hours of exercise which helps me get ready. Again, words are cheap but THANK YOU all for your support.  

Ed 

Posted 4/6/2007 4:55 AM (GMT -8)
I forgot to mention in my last post the PSA history which caused the biopsy: 2.62 1/07; 1.84 3/05; 1.52 2/04; 1.6 6/00; 1.7 8/99 1.4 4/98  Ed

Posted 4/6/2007 8:31 AM (GMT -8)
sween

you have almost the exact #s I had except my PSA was 4.4. The pathology of the prostate showed nothing outside of the prostate and my urologist commented that the turmor was so small they said it was just luck (maybe Divine intervention) that the biopsy needle even found it. So there is light ahead. Good luck and again God bless 

Posted 4/6/2007 1:31 PM (GMT -8)
Sween: Don't forget to buy some men's pads for after the catheter comes out. I suggest Serenity for men -- they are the most comfortable to me. Also, After surgery, don't be afraid to take stool softeners, drink prune juice etc. to keep things going easy in the bowel dept. Even if you get a bit of diarreah, it is better than constipation. Senna Plus worked well for me and there were no problems when I stopped taking it. Now that you are scheduled for surgery, the ball is finally rolling. If you are like me, you will become calmer as surgery nears, and I am the ultimate, neurotic, anxiety-ridden worrier. There just comes a point where you have to let it out of your hands and go with the flow. If you are having a real tough time emotionally, ask your family Dr. for something like valium or Ativan. It will lift your spirits and help keep the anxiety at bay. Just don't keep taking it after surgery. You'll have enough pain meds to keep you zonked out anyway. Best to you. You'll be fine!
Posted 4/6/2007 1:40 PM (GMT -8)
Dear Ed,

I keep thinking, "I wish I had sought out a DiVinci surgeon" instead of having the open radical (nearest was 175 miles away). The reason I think that is that I have been terrible incontinent, but I notice that even the DiVinci people have trouble with that too. So... who knows?

I also took a robe and glad I did.

I, too, cried... but my tears came after removal of the cath when I realized I was totally incontinent and totally impotent. I am learning a little control and, after all, it's only been seven weeks for me.

I too would encourage you to get into The Book. The Psalms are wonderful to read when one is "down". Psalm 42 was great for me, as well as many others (like the 23rd). Knowing Christ personally is the greatest comfort... and He understands our tears, too.

I wish I had found this site before the surgery. These folks are the best.

I also wish I had known what questions to ask the surgeon before the surgery and I wish he would have talked a little more to me about what to expect... but... Oh well, I can't blame him. It was (is) my body, not his.

Gene
Posted 4/6/2007 4:21 PM (GMT -8)
Here's another thought. If your urologist prescribes Viagra post surgery, ask him to write it out for the 100 mg. tablets and break them into quarters for the dosage. The cost between 50 and 100 mg. is pennies if anything and you can save some decent money if you do it that way. There are some insurance companies that do not recognize Viagra as a medical drug in certain cases.

Also, Gene...... my husband had the open procedure and his continence returned rapidly. It just may be the luck of the draw, not the type of surgery. He went padless after 6 weeks, but probably could have alot sooner as he was dry for many days. He never ever gushed, only dripped. I don't know why it is just faster for some to regain continence. It doesn't seem fair after all that you've been thru, I'm sure. I wish you well on regaining control. It'll happen.
Posted 4/7/2007 6:15 AM (GMT -8)
Good Morning Everyone:  Just finished my exercise routine and thought I would "vent" a little. 9 days from now I have my surgery. As one of my friends who has had the DaVinci said to me yesterday - "Ed, just cool it" I know that is what is best BUT somtimes it is very difficult. I tend to project everything and normally just look at the bad side eyes . Intellectually I know this is wrong and I know I have done everything in my power to make this event successful. However, sometimes it is very hard. Thanks for reading.  Ed
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