Our Journey ~ Sharing is Caring by....... Buddy & Lee

If weird symbols are showing??        Click on the Refresh button          Updated & Revised: April 2010      Welcome   to….   "Our Journey”   ~ Sharing is Caring   The stepping-stones in our path   The ultimate goal … to be prostate cancer free   by    Buddy & Lee http://i880.photobucket.com/albums/ac6/bluebirdathealingwell/BuddyandLee.jpg   April 3, 2006   Radical Retropubic Prostatectomy          1 st PSA ~ June          2006   2 nd PSA ~ February 2007 3 rd PSA ~ August      2007 4 th PSA ~ February   2008 5 th PSA ~ August      2008 6 th PSA ~ February   2009 7th PSA ~ August     2009 8th PSA ~ April 2010   less than 0.1  NON-DETECTABLE                         **   When prostate cancer is small and curable, it is also silent—it produces no symptoms.   That’s why we are all so shocked at finding out that “we” have cancer.   It’s no longer an old man’s disease.   And that’s why it is very important to learn as much as we can about this disease and what our options are.   We’ve noticed in the forum that there are a lot of questions about what to expect? What treatments are available?     What do I need to do to prepare?    What supplies do I need to buy? What happens when you get there for your surgery?    What about recovery time?   As a spouse, caregiver, partner… What do I need to expect?    What about cost?      Below are areas that we’ve touched on in “Our Journey”…   HEALTH BEFORE SURGERY Kegel Exercise Items to have on hand before surgery Preparing for Surgery Day ** Long-Term Issues: Urinary Continence and Sexual Potency HEALTH AFTER SURGERY PLEASE>>>>>>>>    DON’T RIDE… PLEASE>>>>>>>>    DON’T LIFT… BE PREPARED:   Coming home with a catheter   aka: Mr. Hang After Catheter Removed Issues: (A) We felt like a BUS hit us (B) Phone call to confirm findings (C) We had already made our decision (D) Preparing for surgery (E) Bladder Spasms (F) Constipation     KNOWLEDGE IS POWER... and POWER conquers FEAR!!!!!   We decided to share “Our Journey” in hopes of helping at least 1 person! If it helps more….   If it helps you!!!!       That will truly be a blessing … At no time are we writing to tell you what you must do, or what you should do….   Your   Decision   is   Your   Decision!! And it will be the right decision for you!   Just giving you a view of what decisions we made, what the process was for us, and the outcome as of this date.     Prostate cancer... is an “US / WE” disease and must be treated as an “US / WE” Journey .   Make this a “team” journey…. Do everything together.   You will need each other and each other’s strength!   “Hand-in Hand” “Heart-to Heart”… nice words borrowed from Tim G…     Read as much as you can on the forum … there are so many different scenarios.   You will gain much knowledge from all of them.   There will be so much coming at you in the next little while… I would suggest the following for any new member:   1.       When you read a posting that you think you might want to re-visit…. Make sure you know who Started the thread… and the title of the topic/thread… so you can find it again if you want to go back to it.   There are so many postings coming in daily ~ you may not find it again…. 2.       Take a pen and paper to all of your appointments… Have your loved one take notes so you can look back over the consultation when your mind is clear.   (Take a tape recorder if you need to)…   Once you hear the word “cancer” your mind will process only that word and things will become jumbled.   This is normal and you will get through it!   We hope our journal entries will help you.   Ideal scenario: Prostate cancer detected early, treated, and cured.   Prostate cancer doesn’t have to be fatal.   If it’s caught early enough, it is completely curable.     Sharing    is     Caring   The most important thing right now is... take one~day~at~a~time. Reserve your energy because you'll both need it.   One thing each of us must remember…. NO 2 SITUATIONS ARE THE SAME   Take a deep breath.... and know that there's a lot of us like you out there... and we've been where you are now.   All different kinds of lifestyles…   different PSA scores, different treatments, different incomes, different jobs, different health issues, all different ages, and most of all… MENTAL ATTITUDES ARE DIFFERENT.   So ~ take a deep breath and let HealingWell forum friends help you!!!   Remember… YOU MAKE THE DECISIONS… YOU HAVE OPTIONS…     Sharing ~ Our Personal Threads with You!! If you or your loved ones ~   pull “1” thing from our journey that helps you on your journey…… it will be our gift to you.   Direct Links to our Personal Journey…. and Our Own Personal Threads: Very important to do the following when you click on Direct Links from within the forum… When you Click on titles below it will take you directly to our personal Threads! Once there… remember to click on the REFRESH button. (This is important)   Our Journey ~ Sharing is Caring (you are on this thread) Give Yourself a Second Opinion... Read this book...   Dr. Walsh’s Guide to Surviving Prostate Cancer A Special Note for Loved Ones (Wives, Partners, and Caregivers) MURPHY Our Special Helper Helpful Hints ~ & ~ Direct Links to Important Topic Threads ~ Hope this helps you!! :) The hardest thing for me.... The Power of Hope #2 WOO~HOO!! from Buddy, Lee, & Murphy :) papa & mama bluebird 3rd Woo~Hoo for Buddy, Lee & Murphy   ** Dr. Walsh’s Guide to Surviving Prostate Cancer… (Give Yourself a Second Opinion), is truly a book of knowledge… teaching you about this disease… that affects the whole family!   Yes ~ it is a 2001 book but it will give you a “solid foundation” to start Your Journey on…   his revised edition is available.   It is not a book to make you scared ~ but to make you think, to make you understand, and to make you knowledgeable about this terrible cancer….. It doesn’t hold back….     But remember…being scared is part of this whole picture at the beginning anyway… so take in the information that is offered from its contents.    Just so you know… we did not read Chapter 12… but we know it’s there if we ever have to travel that path.   We are not promoting this treatment.... that is definitely a personal choice.   This book has information that "all of us" can use no matter what treatment you decide on.     Read only areas that you are comfortable reading at first.   Gradually you will likely read it all…   We did not read Chapter 12 together.   After our surgery and after we had a few weeks under our belt I skimmed through the pages… and it made me really appreciate what we have just gone through….. and give thanks each day for having found this cancer early.   There are excellent postings in reference to this book in “Our Journey” and at the end of our posting… read them all!!!   Remember ~ we all react differently and the forum is a wonderful place to express your own feelings about certain things.   Knowledge is Power… and we gain Knowledge by reading, reading, and more reading.   There’s a Thread started by another member…titled “Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer”   it has some excellent postings also…   There are other books that have been recommended by members. Click on the link..>>   BOOKS... Recommended by Forum Members   I’m adding, “Worry???”… Wittler… asked why I hadn’t told her this before they had surgery ~ so… I thought I’d add it here … because this is truly how we feel and felt.      Worry??????   Why???      Worry causes stress ~!@#$%^&*()_+@#$%^&*     Stress causes all sorts of bad stuff…    It gets you nowhere…    It drains you of strength… and    What’s going to happen is definitely going to happen           whether you worry or you don’t worry                     So ~ No More Worrying.   Okay   J   Knowledge is Power.... and Power takes away the fear!!!       HEALTH BEFORE SURGERY:   Start kegel exercises immediately to strengthen the external sphincter muscle.            (no matter what treatment you decide on!!!… be prepared).   (A)   See Excerpt: Page 244 under Long-Term Issues: Urinary Continence and Sexual Potency in Dr. Walsh’s book.   ** It’s hard to believe, but urinary control does continue to improve over two years and, in an occasional patient, even longer than that.   ** Can you do anything to speed things along, and improve your urinary control?   First, whatever you do, do not wear an incontinence device with an attached bag, a condom catheter, or clamp!   If you use any artificial device, you will hurt yourself in the long run.   You won’t be able to recover your urinary control, because you won’t develop the muscle control you need. <end excerpt>     Start walking and do stairs (machine) if possible, and walk some more…!   You know all the other stuff is automatic when it comes to treatment.   Stop smoking, Stop drinking, & Eat healthy.   Kegel Exercise:   See more at the end of this posting.   Before surgery : Our urologist said to work the muscle (kegels)… when urinating standing up.   start, stop, hold, start, stop, hold… several times during urination.   This strengthens the muscle.   Also, walking and climbing stairs are really good exercise for the little sphincter muscle.     Stop kegel exercises while you are catheterized….   After surgery : ( and once catheter is removed ) we were to still continue doing kegels when urinating (standing up!!) (Our personal Start/Stop/Hold sequence is listed below)     B.   See Excerpt:   On page 247 of Dr. Walsh’s book he states: Exercises you can do :   Every time you urinate, do it standing up.   You can’t practice the following exercises, which strengthen the external sphincter and speed up your recovery of urinary control, while you’re sitting down.   Start your stream, and once it’s in full force, stop the stream by contracting the muscles in your buttocks --- not your abdominal muscles, not the muscle “up in front” around the penis.   Tighten your buttocks: imagine you’re trying to hold a quarter between your cheeks.   Hold the urine back for 5 or 10 seconds, and repeat as many times as you can.   Note: Only perform these exercises when you’re urinating; if you keep contracting these muscles throughout the day, you’ll overdo it—the sphincter tires easily—and you’ll end up wetter than you would otherwise. <end excerpt>     Previous paragraphs in this book address… things to speed up your urinary control.   One is not using any artificial devices…… and certain high blood pressure medication relaxes this muscle so you may need to check with your doctor.   Special Helper needed….   @ Direct Link :   Murphy ~ Our Special Helper   http://i880.photobucket.com/albums/ac6/bluebirdathealingwell/Murphy.jpg   Items to have on hand before surgery:   Prescript ions: Ask your doctor for “all” prescript ions ahead of time so you have them at home before you head out the door for surgery.   (Pain med, stool softener, bladder spasm, antibiotics, etc.)   Head Brace:   I took 2 very soft ankle socks and stuffed them with soft material. The pillows in the hospital are really not very good.   I placed them on the sides of Buddy's head so when he slept his neck was not strained, as his head would roll to the side.   This really helped!!     Leg Lotion: I massaged Buddy's calves.   It really seemed to help him after the pressure cuffs were taken off. Blanket: Used while I slept in the chair at the hospital.   Neck Pillow:   Used while I slept in the chair at the hospital and Buddy continues to use it today while recovering in his new lounge chair J   Helps relax his body while he reads.   It was a lifesaver coming home from the hospital too!   Lounge Chair:   We bought 2 and they were the best investment!!   One that allows you to lean back.   This helps keep pressure off the incision(s) and the perineum (the area between the scrotum and rectum).   Take time to practice getting up without using the abdominal muscles… this will help once you’re home…   Donut Pillow: Used when sitting at the computer (not in the lounge chair)… this really helps take the pressure off.   We have since…found that placing a soft pillow over the donut gives it an extra soft cushion.   Wedge Pillow: Used on the bed to help with sleep.   Also ~ helped in making it easier to get up out of bed. We practiced getting out of bed without using the abdominal muscles.   I stood on the side of the bed and braced myself so Buddy could use his upper arm strength to pull up holding on to my arm.   This worked beautifully!!! Both the wedge pillow and the pulling up motion.   J   HEALTH AFTER SURGERY:   PLEASE>>>>>>>>    DON’T RIDE ON LAWNMOWERS, HORSES, BIKES, during your recovery period … take the time to heal and recover completely before you try these… We personally will not be doing any of these in the future…    (SEE SPHINCTER Information at the bottom of this thread) PLEASE>>>>>>>>    DON’T LIFT ANYTHING HEAVY ~ DON’T LIFT/PULL YOUR BODY UP for at least 8-12 weeks… BE AWARE and LISTEN TO YOUR BODY…. If not… you will be the one to suffer.   You don’t want a HERNIA!!!!! Practice getting out of bed, lounge chair, couch, etc… before surgery.   This will truly help once you’re home from the hospital. I helped :)   see information above…under wedge pillow.   BE PREPARED:   Coming home with a catheter   aka: Mr. Hang The catheter was our best friend….   We let the catheter be our priority!!!   We did not go out to dinner, we did not go out to visit friends…   we took care of each other during this time and let the catheter “Mr. Hang” do his job .   Giving the body time to heal properly on the inside. Ø        Pets…. Remember they like to jump and play so be aware that this could cause you some undue hardship if your catheter comes out inadvertently …Per: Daveed J Ø        We kept the large bag hooked up except for 2 occasions ~ when we went for our appointments with the doctor.   The small bag will cause you problems if you let it fill up and you get backflow…   Why take that chance… Ø        Extra big size PJ bottoms with a drawstring….   I slit the side seam from waist to mid thigh.   I re-strung the drawstring so it could be adjusted to the tightness that is comfortable for walking and sleeping.   The idea is to have the catheter tubing from the penis to the bag being a comfortable angle for walking and sleeping.   Ø        We left the penis open (no pads or underwear worn during the time with the catheter) only the pj’s. Ø        Expect mucus to appear on the tip of the penis…. This is normal and should not be removed.   It’s a natural body reaction with having a foreign object in the body… if cleaned off the catheter tube will be dry and will agitate the penis and infection could occur.   (Pus means possible urinary infection that is treated with an antibiotic… this is very common with a catheter.   So be aware!) Ø        Clean the area on the leg where the mucus has dried… with light soapy water and dry. Clean the area on the penis and tubing with water only...(soap will dry the area and make it more susceptible to chafing.   (some members use vinegar) Ø        Container to hold catheter bag while in bed. We used a small laundry basket.   The bag hooked nicely on the inside side.   Allowing for a good downward angle for the catheter tubing from the penis to the bag. Ø        Having a mild sleep aide during this time will allow you to get good quality sleep and this will definitely promote healing.   Wives, Partners, and Caregivers…. Sleep when he sleeps…. This will really reserve your energy!!!   We had a sleep aide before surgery to help his mind stop racing during the night. Ø        If you are sensitive to tape ….. check on this in advance because the catheter tubing…is attached to the leg with tape….and several members have had reactions to this and you really don’t need the extra stress of this happening. Ø        Have lots of chicken noodle soup and crackers on hand.   Jell-o too!    We did not eat any heavy meals for a week (our choice).   Hoping to help with constipation.   We also wanted the gases to get out of our system.   We did need a stool softener and we had no gas issues at all…    J This is a personal preference.    Ø        You do not want to get constipated.... so plan ahead to have stool softeners on hand and use them!!! Ø        With catheter in ..... push l ots of liquids during this time to help flush out system.  After   Catheter Removed: Ø        **Liquid Intake …   Back off on the intake of liquids once catheter is removed   After Catheter Removed: Ø         Depends Adjustable Underwear (there are several brands out there… they are easy on the incision areas) Ø        Depends Pads for Men (there are several brands out there… they have adhesive so they don’t slip) There are many different brands… Ask your pharmacist if they have a sample for you to try!!!   Other brands listed in a Thread (see Helpful Hints thread)   Ø        Serenity for Men ~ is a much softer pliable pad for men.   We definitely would have used them at the beginning knowing what we know now   ** Until your urinary control has returned to an acceptable level, don’t force fluids .   Reminder: Caffeine in all forms is a powerful pharmacological agent that increases the frequency and urgency with which you need to urinate.   We also stopped intake of liquid between 6-7 p.m. to help in the number of times we had to disturb our sleep.   (We still do this and will continue to do this) ~  ~  ~  ~  ~  ~  ~  ~  ~  ~  ~  ~  ~  ~  ~  ~  ~  ~  ~   “Our” Personal Journey February 2006 – current papa bluebird (1953)   “Buddy” Retired   &   mama bluebird (1955) “Lee”   & Murphy (ageless :)   At Age 50, 2003     Complete Physical PSA 3.9   Age 52 on January 5 th, Thursday 2006 Routine Physical PSA 5.1    January 24 th, Tuesday        DRE indicated something going on PSA 4.6   Age 53 on February 2, 2006 February 7 th, Tuesday, 2006 Consultation with Urologist February 20 th, Monday              Biopsy (day before…started 5 days of antibiotics) February 23 rd, Thursday              Phone call to confirm findings Adenocarcinoma of the prostate T2a   Gleason grade 3+3=6    5 of 7 cores right lobe, 2 of 7 cores left lobe This is when the BUS HIT US!! (aka by members as: the Hammer, the Truck with 3 semis...) See (A & B)   under “Issues”   February 27 th, Monday , 2006                 Consultation with Urologist to go over the Biopsy Report We wanted surgery immediately!   Requested RRP with *wide excision… (*We took everything out that may have cancer cells lingering…a very personal choice!!) Waiting period after biopsy…. 6-8 weeks.   Why? The body needs time to recover Our urologist suggested we look at all options… and suggested setting up an appointment with an oncologist, and talk with our family physician before making our decision. See (C) under “Issues” February 28 th, Tuesday                Family Physician to discuss Biopsy Report, Decision, & Sleep-aid to help anxiety so we can get a good night sleep preparing for surgery See (D) under “Issues” March 28 th, Tuesday        Pre-Surgery lab work April 3 rd, Monday     Surgery Day…RRP with wide excision ~   6 inch scar starting just below the navel downward to top of pubic bone April 3 rd -20 th, Wednesday – Thursday   (17 days) The catheter was our friend.   We let it do its job and we took the time to heal/recover by staying home during this period of time. walk/eat/sleep/walk/eat/sleep/walk/eat/sleep was our main focus.. and to this day we are so happy we took this time.   We feel strongly we benefited in the long run by doing this.   (Remember this is Our Journey… pull from it what best suits your needs) April 5 th, Wednesday, 2006                    Headed home around 1:00 p.m. in our Jeep Wrangler.   I was concerned Buddy would have a difficult time getting in and out.   Needless concern… he did great and the neck pillow was very welcome for the 1-hour drive home. April 12 th, Wednesday                              Staples removed … Really amazing… they put an iodine solution on his incision and then put 14 butterfly bandages and then covered it with the iodine solution that acted like a glue.   It wore off on its own… the incision healed beautifully.   April 20 th, Thursday Catheter removed – we had no problems with Mr. Hang .   He was the best friend we had….   allowing “US” to sleep and heal . The information in Dr. Walsh’s book helped us tremendously in this area of concern. (Day of removal started 5 days of antibiotics) May 15 th, Monday      Six week check-up… incision doing “great”   … walking, walking, and more walking. We are continuing to do kegels when urinating only.   You can over work the sphincter muscle if you continue doing it during the day as an exercise…    Exception… 1 st pee in the morning… let it flow J   June 1 st, Thursday   Our date to begin doing routine chores, driving, and back to the YMCA for continued wellness program.   Mon,Wed,Fri,Sat,Sun   a 2 hour walk along the creek…and to the YMCA on Tuesday & Thursday                    June 29 th, Wednesday, 2006   1st PSA less than 0.1,   NON-DETECTABLE….!!!!!!! J J   8 th week of recovery.   We are so happy with the results.   And we are extremely happy with our decision, our doctor, our procedure, and our recovery. We will continue to take one-day-at-a-time… and enjoy each day to the fullest.   July & August 2006 Buddy’s recovery has gone very well over the summer… and we decided to travel as we had previously planned to do when I retired. My sister and I drove and we kept Buddy in the backseat.   He had a nice pillow to sit on and he did great! We made sure to have a swimming pool and workout room at night and this helped with the exercise we were missing out on when driving 8-10 hour days.   Every pit stop he walked around. With over 8000 miles under our belt I can say WE DID IT!!!   And we did it well J   We will never forget “Our Journey with Prostate Cancer” but we are here to let you know!!!   You really can get back to a normal life and it just makes living each day to the fullest even more meaningful.   September – December 2006 Coming up on our 9 th month of healing/recovery on January 4 th …   PSA will be in February.   We continue to take one-day-at-a-time and we are enjoying our retirement that we planned for over 22 years ago.   We are now in our Adventure stage of life… and it is more exciting because of where we were just 9 months ago with our diagnosis…   Now it’s time to snuggle down for the winter!!!   Our PSA in February and then I hear rumblings from Buddy that another trip is in the works.   Hmmmmm time will tell. Take care friends…   January –   2007   (9 th Month) Moving forward into the New Year we are heading toward our 2 nd PSA on February 6 th .   Our thoughts remain positive knowing that we will take each stepping-stone that is placed in our path with a positive attitude and a warm heart.   It’s gotten us this far and traveling with friends is truly a blessing.   Thank you for sharing your journeys with us!! and allowing us to be a part of your journey.   February – 2007 (10 th month)   2 nd   PSA less than 0.1, NON-DETECTABLE….!!!!! J   March – August 2007 (11 th – 16 th month) 3 rd PSA less than 0.1, NON-DETECTABLE….!!!!! J         We hope our journey gives you strength…knowing   “You are not alone!” …   You have new~found friends here at HealingWell.com    Continue reaching out to all of us… as you move forward in your journey.   June 1 st ~ a personal thread on HealingWell    Life's Journey ~ Thank you for your friendship!     I will be back periodically to update “Our Journey”… we’ve traveled too many miles with Friends of HealingWell not to let you know how we are doing…   Living each day as it comes and living it to the fullest…   Knowing that we are never promised tomorrow so ~ taking time to smell those beautiful flowers in the garden along the path we travel.  Hugs from Lee & Buddy     We wish for you to find the strength to carry you through with …YOUR JOURNEY…   Issues:                    (A) We felt like a BUS hit us ~ but after processing it and talking through it ~ we felt we were going to get up from the hit and realize it was just a little mini bus that hit us!!   If we can become cancer free….. we will be thankful this bus hit us now rather than 3-5 years down the road.   As of August 2007… undetectable PSA J   (B) Phone call to confirm findings, scheduled Consultation for Monday.   We wanted to educate ourselves on what area of the body we were dealing with and the functions of the surrounding tissues, etc….   so he suggested reading…” Give Yourself a Second Opinion… Guide to Surviving Prostate Cancer” by Patrick C. Walsh, M.D., Professor of Urology, The Johns Hopkins Medical Institutions and Janet Farrar Worthington.   (C) We had already made our decision before the Consultation on Feb. 27 th   Radical Retropubic Prostatectomy…..Lift the Hood …We wanted our urologist to visually see and feel the tissue and take out all surrounding tissue that may be hiding… cancer cells.     (D)   Preparations before surgery :     v       Get your prescript ions filled before your surgery date so you don't have to get it on the way home..!!!     (F) Constipation is something you do not want to have to deal with...          Be prepared in advance.... A stool softener was prescribed ~ we were to start taking after we left the hospital… And start taking a mild stool softener so you don't get constipated!! You don't want to get constipated along with just having your surgery!    Even with being prepared… Buddy did have some issues with constipation.   The pharmacist.. suggested equate vegetable laxative.   We also bought equate Fiber Therapy.   We alternate between the two.   They are very mild.   (If you strain for bowel movements… you will see blood in your urine and with Mr. Hang..you will likely have urine come out around the tubing in the penis) your body is reminding you ~ Don’t strain.. and don’t sit too long on the toilet.   Get up and move around until you are ready to void…   You will also see blood in your urine if you overdo it… walking, etc…   Be aware of hemorrhoids… have something on hand to help just in case.   Preperation H Cool Gel…   (E) Bladder Spasms: Suppositories were given in the hospital and a prescript ion (Hyoscyamine) had been given to us prior to surgery which we started once we got home.   This obviously was the right formula because Buddy did not experience any spasms.   Preparing for Surgery Day We stuck to clear liquids during the day before surgery and nothing after 9:00 p.m.   Our doctor specifically said they would do the enema at the hospital.   Looking back I would have been happier to have Buddy do it at home for the convenience of having the bathroom readily available!   We did one before the biopsy and it worked fine but he specifically stated he wants his done at the hospital.   Worked out fine!   Surgery Day We arrived at 8:00 a.m.   They asked if we wanted Buddy’s name listed and we said, “No”… and the receptionist stated that if I called from home then I would not have access to him or any information about him…. SO… MAKE SURE you are listed and you have proper consent forms….. We were then taken back to the pre-surgery ward around 8:15.   Our anesthesiologist and the team of nurses came in and introduced themselves to us and said they were going to take good care of Buddy! They started an IV and got leg pressure cuffs on the lower part of his legs and an antibiotic was given also at this time.   Our surgery was at 11:30 and they came for him at 11:15.   I walked out with them as they took Buddy to surgery.   They stopped at the entrance to the OR and I leaned over and kissed him . I then headed to the waiting room.   Just got settled in and had a call from the OR nurse letting me know that they just started the surgery.   They called again… just as they were closing up the incision and said the urologist would be down shortly to talk with me…. Buddy would then be heading to the recover room.   Another call came when he was ready to be moved to his room. He doesn't remember anything from the time we were in the prep room.   Next thing he remembers being in the recovery room.   He doesn’t remember the breathing tube being removed and no sore throat.   Expect the sore throat and if you don’t have it!! This is a plus… : ) He had suppositories (at the hospital) to help ward off bladder spasms (medication was sent home for this).   He also had 2 drain tubes left in the abdomen.   Located on the left and right side of his incision…   Once the wound drainage decreased they were removed at the hospital.    One drain was removed on Tuesday afternoon after surgery on Monday and the second drain was removed Wednesday morning.   We left the hospital on Wednesday around 1:00 p.m. Up walking the next morning after surgery. (Many are walking the same evening…) Buddy really felt good walking…but pushed it a little. Too many laps…Blood pressure dropped and they had to re-hook the IV that had just been taken down 1 hour before. Don't push it!   He really felt better when he got up and walked.   Do fewer laps more often than too many at one time!!   The movement really helps the system get better faster!!   We had a 1-hour drive home and the neck pillow was priceless and I only paid $9.99 …so get one now and it’s great for your recovery period too!!   He continues to use it when he reads.   I bought 2 nice lounge chairs for OUR recovery.   He has his chair in the leaning back position to take the stress off the mid section and perineum!   We are having a Great Recovery and so will you!    Being retired has allowed Buddy the time for recovery.   He set goals for himself and set up a daily routine of walking in the a.m., afternoon, pm… Not everyone has this time and so you must do what’s best for you. Our surgery and recovery period was well thought out…. He started back to the YMCA on June 1 st to continue his Wellness program (Tuesdays & Thursdays) and on Mon,Wed,Fri,Sat,& Sun 2 mile walk on road with incline along our beautiful creek in the mountains.   He is not doing any of the seated machines… only the legs and upper body activities. (We’ve made a decision not to do the sit down machines (biking included) to save any extra stress to the sphincter muscle… it has a job to do and we want to give it the best opportunity we can to keep us from any urinary incontinence ~ in the future.     Reminder: PLEASE>>>>>>>>    DON’T RIDE ON LAWNMOWERS, HORSES, BIKES, during your recovery period… take the time to heal and recover completely before you try these… We personally will not be doing any of these in the future…    (SEE SPHINCTER Information at the bottom of this thread) PLEASE>>>>>>>>    DON’T LIFT ANYTHING HEAVY or LIFT YOUR BODY UP for at least 8-12 weeks… BE AWARE and LISTEN TO YOUR BODY…. If not… you will be the one to suffer.   You don’t want a HERNIA!!!!! One thing to note:   Buddy is 53 (at time of surgery), 160 lbs, 5’9” and the exercise is not the Body Building Kind!   He doesn’t smoke, he doesn’t drink, and he eats healthy …. I’m the one who eats the steaks, fries, and butter J I was home the first 3 weeks during his recovery... so I set my body clock to his.   Slept when he slept, ate when he ate, etc... This was a lifesaver for me!   Radical Retropubic Prostatectomy with “wide excision”: We requested our urologist to perform RRP with “wide excision”… We were both very adamant and put it in writing to him so there would be no questions about him leaving something behind.   Yes, this is a radical decision… but one we BOTH wanted.   Quality and Quantity was our agenda to this decision.   We wanted to do whatever we needed to do to help in the removal of all cancer cells.   Taking out the prostate with attached seminal vesicles and segments of vas deferentia, and the neurovascular bundles.   Our choice to have the “wide excision” is a very personal one.   We both wanted the (prostate) taken out immediately and everything that could have any hidden cancer cells in them.   Our 2 main objectives were… Cancer Free & Urinary Continence   ** Excerpts from “Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer”   ** Long-Term Issues: Urinary Continence and Sexual Potency: “It seems before surgery, many men focus on impotence as the major complication of radical Prostatectomy.   They are so wrong.   Recovery of urinary control is far more important and –if it happens slowly, or doesn’t happen at all – cast a far greater shadow on your life.   If something’s wrong with your ability to urinate, you’ll be reminded of it several times a day---or worse, several times an hour--- not just a few times a week or month.   And frankly, having to change your adult diaper because you just involuntarily urinated in it can dampen—literally—any romantic thoughts that you do have.     ** Urinary continence: The return of urinary control:   I posted a sign in the bathroom…   ** Phase One is when you can remain dry when lying down.   ** Phase Two is when you’re dry when you’re walking around.   ** If you can walk to the bathroom and not urinate until you get there, that’s a GREAT SIGN!!!… it means that the sphincter is intact.   ** Phase Three, you are dry when you stand up (using muscles that put pressure on the sphincter) after sitting.   ** Remember, the recovery of urinary control is a slow process.   The most important thing you can do during this time is not to get discouraged.     J Ecstatic to say “we” have accomplished all of the above….   ** Excerpts taken from a wonderful book called “Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer” by: Patrick C. Walsh, M.D. and Janet Farrar Worthington.     This book gave us (and continues to give us) so much knowledge… and Knowledge is Power .   Power to help us understand what to expect which in turn helped us to reach for a very positive outcome.     Kegel Exercise ~ Our Routine/Schedule   Before Surgery: Just a little back information to help understand what we are dealing with. Getting the little guy (sphincter muscle) ready before surgery day… !!   This is why the exercises (kegels, walking, stairs) are soooooooo important to strengthen this little muscle before surgery.   So ~ when it’s time for him to kick in and start working…. He will be ready!   The main thing our urologist told us is to “not overwork him”!!!   After Surgery (When catheter has been removed) Take time to heal/recover….   Listen to your body.. it will tell you what it needs and what it doesn’t need.   Don’t push too fast because you really are going to feel good….   But you really need to take it slow!!!   An **excerpt from Dr. Walsh’s Guide to Surviving Prostate Cancer   **Men are equipped with three separate anatomical structures that control urine – a sphincter at the bladder neck, the prostate itself, and the external sphincter.   Radical Prostatectomy knocks out two of these—the sphincter at the bladder neck and, of course, the prostate—leaving only the external sphincter to do the work of three.   **Because of the powerful structures upstream, this (external sphincter) is never tested or even used much in most men….   ________________________________     Right after Mr. Hang said goodbye!!!   A small amount of leakage.   When we got home (after holding it for approximately 1 hour) ~ Buddy was thrilled to be peeing like a teenager again!!!   START the urine flow and once it has a good stream… STOP   Hold (Kegel) for 10 seconds   ~   He feels the sphincter muscle tighten up START regular flow (2-5 seconds) STOP   Hold (Kegel) for 10 seconds START regular flow (2-5 seconds) STOP   Hold (Kegel) for 10 seconds START regular flow (2-5 seconds) STOP   Hold (Kegel) for 10 seconds (depending on the amount of urine…you may do 5 reps)   (Ahhh….this is music to my (our) ears...   :)   During 8 week healing/recovery period Buddy added a few (in-between) kegels during the day when he was up and about in the house.   He also pushed the sphincter during his walks to hold the urine and again could feel the muscle strengthening over time.   He could also feel the muscle during the stop/start while urinating.   Definitely the time spent getting this little guy ready prior to surgery ….was a huge reason for his continence so early on.   He stopped doing the in-between kegels early on in his recover… because of being continent.   No doubt he would have continued doing more kegels if he felt it was needed.   That’s where listening to your body comes into play.   This is so important….   Before surgery ~ Buddy started a wellness program when he retired 4 years ago.   2.5 hours (Mon-Fri)   His routine included walking, leg lifts, stairmaster, weigh machines, hand weights, and swimming… established before being diagnosed and continued right up until surgery time…. After being diagnosed he added kegels when urinating … to start strengthening the external sphincter muscle.   After surgery ~ Buddy held off his regular workout routine for 8 weeks…   He walked 3 hours daily….1 hour each… a.m. /noon /pm during this time period…..   Week 1 through Week 3 ~ He walked the driveway which has a nice incline… gradually going further and further up the lane.   Week 4 through Week 8 ~ He began slowly heading toward the water wheel approx 1 mile from home…which has quite a bit of incline… since we are in the mountains.   Week 6 ~ I bought him 3 lb. hand weights to carry.   His upper body was screaming for some kind of workout J   Week 8 through Current Date …..Back to the YMCA…   (Tuesdays & Thursdays) How much time??? How far to walk??? …….. Listen to your body … Don’t over do it and gradually increase your time. His new workout routine has a few personal modifications.   No sit down exercises (bicycling, machines with hard surfaces).   We are really going to take care of the little sphincter muscle that’s doing all the work in keeping his urinary control in control.   Concentrating on walking indoor track, upper body stretching, abdominal area strengthening, and the stair master machine to help strengthen the sphincter muscle.   He finishes up his workout with a gentle swim and a nice hot shower!!   At 16 months and currently… Still listening to his body!!   Buddy’s 5’9” and weighs 160 and is in good health!!! J Reminder:   We are in our 16 th month of healing/recovery at the time this schedule was listed. He started out with less time…. and at approximately 11 months reached this schedule… and continues this as of Month 16. 2.5 hour workout at the Y! 2 days / week *Tuesdays & Thursdays   20 minutes walking the track 20 minutes upper body stretching and arm weights 12 minutes stair machine.   He does the full step (not the little short ones) 20 minutes walking the track 20 minutes upper body stretching and arm weights 12 minutes stair machine. (full step) 06 minutes walking the track 15 minutes swimming 15 minute “nice hot shower”…. Ahhhhhhhhhhhhhh   Yes ~ even the doctors have different opinions and I think it’s truly up to the individual to get in tune with his “body” and the little guy (his sphincter muscle!)   This is such a small muscle and needs to be protected at all cost!!! This works for us and are truly happy to share!   Happy “kegeling”… on our paths to HealingWell.   We've wanted to share ”Our Journey” in hopes that others can pull from it.   A good foundation is what you need to get started on your own journey.   We hope this helps you!   Sharing in Friendship,    Lee, Buddy, and Murphy     http://i880.photobucket.com/albums/ac6/bluebirdathealingwell/BuddyandLee.jpg http://i880.photobucket.com/albums/ac6/bluebirdathealingwell/Murphy.jpg post edited to add PSA results

Amen.

It was from going back through all the threads on this site - and reading yours, Mama Bluebird, along with all the rest ofyou who have been there - that made it all seem do-able, rather than an impossible nightmare. Fears and uncertainties will always remain, but it's with the go-ahead backed by all the caring folks here. That is simply priceless and cannot be had from anyone who hasn't been through it.

Thanks for sharing. My DaVinci surgery is scheduled for August 23, 2006 for prostate removal. I am 54 years old, and had 2 of 12 needle biopsies positive with a Gleason score of 6. An MRI of the prostate area indicated the cancer to be confined to the prostate and curable.

I proceed with the thought that the surgery is far off, but realize the date is coming up rather quickly. I have found this website
to be very helpful in understanding all that I will expect. Thanks again for sharing your experiences, for they have been very informative and helpful. God bless you.

Bluebird,

Jeff's surgery is scheduled for Aug 30 and is going with radical. I'm now in the mode of reading books and making my lists. I have a hotel room near the hospital so I don't have to drive back and forth. It would be a very long drive through Wash DC. If Jeff has to stay in the hospital longer than a few days, I'll go home to see the family sometime. our children (ages 23, 19, 15) are used to us traveling and are independent, but I also don't want to shut them out at this time.

I'm very curious how you and your hubby are retired at such young ages. lucky you!! Jeff works for himself and has that taken care of. His employees are very supportive and will take care of things while he is gone. I work for the federal government and can take as much time off as I need to.

thanks again for being here.....kat

I have a question about when your husband was in the hospital. did he wear the hospital gown or the PJs? Jeff is also having open surgery and I'm just wondering. kat

It is definitely more practical to wear the hospital gown because of the cath./bag, and likely a drain tube. When I went home my wife had a pair of extra large sweats for me. While I was limping around the house I wore a 3x t-shirt as a night gown with a loose fitting light robe that kinda hide all the bags and tubes (I came home with a drain tube w/pouch and the cath.+ bag). The t-shirt and robe made it much more comfortable. This only lasted for about 5 days, and then normal pj's/clothes.

Good luck to you both, Jeff and Ed.

Glen

Ed,

I bought a couple of carpenter style pants just one size larger for Paul and he loved it. The legs were plenty baggy to hide a cath and the roominess of the style gave him somethng comfortable to wear for the next 2 weeks while the bloating and discomfort resolved.

This surgery is so much more patient friendly these days. Not the incontinence part. That's better but still quite disconcerting for anyone.  I would have loved having such a procedure as a DaVinci available when I had a hyster in 93. I know you will do very well. Good Luck and try....try to relax a little.

Swim  

Hi Michael,

Thanks for the detailed up date on your recovery. This will really help those who are about to under go the procedure. There are so many things you have mentioned that the doctors did not. Nothing like a personal account from someone thats just been there to ease the fear.

I'm glad to hear you're making such good progress in your recovery. I think you're way ahead of where I was in the 4th week. So you must be doing all the right things. Only one caution: do not attempt lifting anything that weighs more than 5-10 pounds. I don't want anyone else to go through what I did.

Keep up the good work'

Glen

Thanks everyone! I keep telling Jeff everything I'm learning and I'm even making notes because there is no way I'll remember it all. I think someone should publish a booklet with all of these details and every doctor and hospital should hand them out. Jeff does get nauseaous from anesthesia and pain medication, so he is telling them about that ahead of time. I checked with the hospital to see if they had wireless internet service for the patients, but they don't. I assumed they would since the staff uses it. I was hoping to get online and read a lot of these posts for motivation for Jeff and me.

Post Edited (M. Kat) : 8/22/2006 11:29:05 AM (GMT-6)

BlueBird,
I just wanted to let you know how helpful your journal has been for us. We learned 4 days ago that Curtis had prostate cancer...right now I think I'm still in shock, but reading your journal has been a lifesaver to me.
Wicket

Dear New Friends, I truly feel there is never too much information out there for new members to pull from. So ~ I’m popping “OUR JOURNEY” to the top!! This is our special....commitment to continue our belief that Caring is Sharing…. My goal has always been to let new members know that the path they are just starting out on will become a journey.   And we are all committed on this forum to helping them traverse their stepping-stones on the path to becoming cancer free. This is a wonderful forum where true feelings can be shared and understood.   It is truly mind boggling to see how many surgeries there have been since ours in April..... and how many are newly diagnosed members.   Previous “Threads” and postings have so much information in regard to other members journeys… that having time to go back and read them would truly help. It will really let you know you are not alone in this fight.     I hope new members can take the time to go through them. Knowledge is Power Power takes away the fear…… and fear is one of the stepping-stones we are here to help you over.   Keeping you “all” in our thoughts and prayers.   Hoping our hand can guide you over at least one stepping-stone on your journey.   In Friendship,   Lee & Buddy

Mama B. your the best, this post is great im reading this at work . Im trying to take in as much info as i can seems a bit overwhelming but i just keep plugging along. I look forward to Tracey reading your story she is a lot like you when it comes to details. Thanks and God bless. John

SL,
There is no epidemic.

What there is, is a testing frenzie in the US just like in a lot of other countries. Read statistics from studies done in other places, not just in the US. So many of the cancers being treated are being treated earlier than ever before in history. For younger men it means we live instead of die.
For many older men over treatment may be the epidemic, not the diagnosis.

Younger men are living cancer free today because there is now a way to save us. Today there is a way to spare most men the agonizing slow death from a cancer that used to always kill its victim. We're keeping men alive because men want to live! How we chose to live is completely up to us as individules. The one single thing I regret more than anything in my past is the years I did not realize this. The way I chose to live punished my family and wasted nearly a decade of our lives. Today is our 20th wedding anniversary. I figure I owe my wife about 8-9 of the 20 back. No better day than today to start! Paul