SIX MONTH post-surgery - October 20, 2007
Well, we have passed the six month point, and everything looks good for Ken. In 10 more days it will be one year since diagnosis. This should be a happy month but has been devastating. My dad died very unexpectedly a little over a week ago.
So we have been back in North Dakota taking care of things. We were just there two months ago for his sister's funeral. The cause of his death isn't yet known. He was alone at home (my mom was travelling to see my sister in SC), and after she couldn't get a hold of him for a couple days and calling a couple people to see if he had been out to coffee or to the farm, became very concerned and asked our family pastor just to go check in at the house.
He was found collapsed at the side of the bed. Initial speculation is sudden heart attack, but full autopsy results won't be back for several weeks. He was healthy and taking good care of himself when we were back there two months ago. I am heartbroken Any hugs would be appreciated.
FIVE MONTH post-surgery - September 13.2007
Sorry didn't get a chance to update you all on the latest PSA, but it was another less than .01 We left for a trip the next day so didn't get to pass on that info.
Ken has his first injection meeting this Monday, so gotta get my head and body back in the game :) Intercourse? Oh yes, I remember that!! Want our first experience with it to be a good one! But already told him to make sure he picks up some sudafed with it:)
OK I am off to read the forum and catch up!
FOUR MONTH post-surgery - August 10.2007
Hi all. Haven't been able to be around as much as I would like. Have been reading occasionally, but not posting enough. Just really busy with stuff.
Ken is totally over incontinence with no problems since last update. We are STILL waiting for our Osbon (sp?) pump. They got it through insurance, so supposed to arrive any day. Cost was only $58. Next (second) PSA is August 24. Hopefully will be able to use pump up until then, and if that isn't working, going to request injections. Needless to say the ED is still an issue for us.
My aunt (on my dad's side, although adopted) died last week of cancer, so we went home to ND for the funeral. She was sixty and had breast cancer that wasn't caught until it had metastized to her bones. So it wasn't unexpected. My other aunt also died of multiple cancers, also started with breast cancer (on my mom's side) back in March. So I don't have any aunts left. And I will be vigilant of it since both my mother (still alive, she had a double masectomy a few years back) and her sister had it. And my dad's sister (although adopted). But I certainly do have genetic risk.
Ken and I started south beach diet in July because have put on some pounds since the surgery, etc. We both have lost about 10 lbs. And are shooting for another 10-20.
THREE MONTH post-surgery - July 10, 2007
Doing well, very active with no incontinence. We are working on a new rock garden and Ken has been doing fantastic even with lifting heavy rocks, etc. No stress incontinence at all.
The erectile function has not returned yet. We play around some and orgasms aren't a problem, but we have not had intercourse since surgery. Still doing cialis and viagra. His penis has definitely returned to normal "semi-hard size", but no real hardness. Ken has appointments with the pump guy this week (our doc wants that first, i kinda want to skip to injections). But I guess we will try the pump first. And then hopefully move onto injections.
Next PSA is in August. Hopefully it is as good as our last one.
FIVE WEEKS Post-Catheter - May 24, 2007
Well it is five weeks post catheter and amost seven post-surgery, and it has been a pretty good week with a couple breakthroughs.
Ken has stopped wearing pads around the house and at night. Can sleep through night fine. Still puts one in when going out just in case. But control is excellent. We did a lot of gardening last weekend, and even with bending, etc. was not experiencing little if any squirting or leaking, so decided to try no pads while around home and is working well.
One piece of very good news! Last night for the first time, Ken believes he had an orgasm in his sleep (can't really call it a wet dream anymore, lol ... but he is pretty sure he had an orgasm albeit without any erection). But since that is the first real libido or arousal he has experienced, we are hoping that is the first sign that things are "waking up".
ONE MONTH + one day (PSA results in) - May 11, 2007
Had the PSA one month out yesterday, and I was extremely paranoid with the non-results when we called in about 3 pm this afternoon or more like "will have doctor call you with results." I was paranoid! (why does the doctor have to call, etc. etc. running through my brain!)
BUT doc did call at end of very today with the results. Less than .01!!!
On other fronts:
Ken has been getting through the nights without any problem and some days very good, some days a little worse. He is just starting that "ache" in the perineum that some of you have talked about, and doctor said that is is good!
Nothing to brag about yet, but doc said not unusual. So being patient there :)
THREE WEEKS - Post surgery May 01, 2007
Three weeks out, it actually seems like the surgery is a distance past. Whereas before the surgery it seemed like the biopsy was just yesterday. So update on progress:
Doing ok, i think. Ken is still weaing a pad with a few dribbles here and there. There was a period after a few days of catheter out where it got worse, then better again. He cut back on the original doctor kegel recommendation of 4 sets of 20, and is now doing about 4 sets of 10-12.
Last couple of nights he still has to get up at about 5:30 AM to pee, but compared to three times a night earlier in his recovery seems to be improving. And daytime peeing is up from about 45 min-hour to almost two hours.
Not much yet on this front, he is taking cialis, and we have tried a viagra thrown in here and there a couple times. He is experiencing some enlargement during mornings. Meanwhile i have had a couple crazy sex dreams :) We have tried mutual stimulation, but he still has some pains at one of his stitches trying to do that ... sooo ... guess we will wait a little bit more :) patience, patience, patience name of the game.
We are walking outside about an hour a day, just sticking on roads and not the more challenging trails around here. He is doing stairs in the house and adding kegels on to them. He has been driving since catheter out with no problem.
One stitch doesn't seem to be healing quite as well as the others since the stitches dissolved (the one right by his previous appendectomy), but doesn't seem infected or anything, we are using hydrogen peroxide on it and letting it breathe. (it looks like if you slightly cut yourself with the very tip of a knife), whereas the others are completely closed. Any suggestions on what to do about this??
TWO WEEKS - Post surgery, April 24, 2007
Two weeks post surgery. Ken has not leaked at all today, even with lifting, going up stairs, etc. Last night no leakage. Still got up once to pee during night though. Hopefully almost done with pads :)
On the sex front tried to arouse him this morning. Still no real erection but a few "stirrings". We might try to mix viagra with cialis. Have done it before during avodart therapy. and worked well. (not doctor recommeded .. this is our own cocktail. don't do without a doctor's approval).
CATHETER OUT - April 20, 2007
Got catheter out this morning. Ken said didn't really hurt, so that is is good. Doctor wants him to do 4 sets of 20 kegals a day. And started him on Cialis for ED therapy ... three or four times a week (he says he prefers this to Viagra .. guess every doctor is different?). A few dribbles so far here and there as expected. Doc said not to be surprised if go through four or five pads today, but should get better soon. (hopefully if one of the lucky ones!).
PATHOLOGY REPORT-April 13, 2007
Dr. called with pathology report. about 1% of prostate involved. Very small tumors in BOTH left and right apex. Margins clear!!! Gleason upgraded to 3+4=7.
SURGERY-April 10, 2007
Just wanted to let everyone know everything went great! ... I will write a longer post with all the details. But Ken is doing fantastic. Surgery went well! Thanks for all your thoughts and posts!
Promised to add details, so here they are:
Dr. Ruyle said everything went perfect once into the prostate (an adhesion from previous appendectomy took a bit longer to get in). No "stickiness", nothing he could see that had spread. Prostate came out easily. Both nerve bundles saved. He says he totally expects nothing but good pathology results, but of course can't promise that!
Catheter out on Friday, April 20.
This is for anyone who wants to know a detailed experience of surgery. (of course every experience is different, but this was ours).
We checked in for a 12:30 PM surgery at 10:30 AM. After minor paper work we were escorted back to a cubicle at about 11:00 AM. They did blood typing/change into the stylish hospital gown/shaving of belly/IV insertion. They also gave Ken a wristband with a "barcode" on it that would scan wherever he was in the hospital and i was given a "code number" to look at on computer monitors to check and see where he was at any time. (or call)
At about 11:45 AM he and I were taken to Pre-op.
Our doc stopped by, reviewed our admission stuff, asked if we had any questions. etc. Ken signed the consent to surgery form which we were previously given. Said the anethesia guy would stop by.
Anesthesia guy stopped by, asked if we had any questions double asked the questions "allergic to anything, under before, etc. etc." Then said he was inserting a mild sedative into the IV. From then on Ken was kinda loopy lol.
Operating Nurse stopped by and asked again if we had any questions. She said she could call me in the waiting room every hour or so if I wanted, and i said "YES!". She said she would do that and he was ready to go! we kissed and i just told Ken "see when you wake up".
Of course Ken remembers nothing. But in the waiting room, Dr. Ruyle's nurse called me every step of the way:
1:00 PM - He is doing well, they put on his embolism stockings, put him under anesthesia no problems, just starting to go in with the robot
2:00 PM - Dr. is just going in to start cutting away the prostate
2:45 PM - Prostate out. Starting to connect bladder and uretha
3:50 PM - All done shortly moving to Recovery. Dr. will be out to talk to you shortly
4:00 PM - Dr Ruyle came out all smiles. He said everything went perfectly, except it took a little longer to get in to prostate because of previous appendectomy adhesions, but that doesn't affect getting the prostate out at all, just took a bit longer to get in. Nothing unusual after that.
This is the only "panic" i had. They had said about one to one 1/2 hours. about 45 minutes in to his recovery i heard "Dr. Ruyle call ****" and i knew that was the recovery room and that my love was the only one he still had in the recovery room.
So i called the recovery room number and checked on status. He was puking from the anesthesia even though he only had ice chips right after and it was the dry heaves. Which was killing him as far as the stomach goes. But they got him an anti-nausea med in his IV. He still had to stay in recovery about an extra hour.
6:00 PM they said moving into his room ... yeah!!! I can see him.
He was kinda out of it and then pain. They couldn't give him any oral meds so gave him a shot of demerol in his butt. That kinda knocked him out. Didn't make him walk that night cause he was flat on his butt. I stayed over night in his room
Morning after he was a new man! No pain, wanted to get up and walk and we did that over and over.
Doctor came about 1:00 PM for official discharge, etc. (although it took at least another hour for nurses to actually discharge). We were out by about 2:30 PM.
Ride home was fine, no pain. Only pain is when he strains his abdominal muscles to get in and out of bed, etc. He didn't want to go to bed after being cooped in hospital, so walked around house some, walked outside, he went to sleep about 8:00 PM. Ken has had no pain meds since the demorol shot in his butt. (edit this: he woke up at about 2 AM and wanted some pain meds).
I was surprised when looking at the incision marks for the robotic. I expected some oozing or something. They look superb.
How do you clean the catheter bag(s) with vinegar? Only thing I could figure out was to use a funnel in the shower stick it on the top end, pour vinegar, expect some spill over, shake it and let it drain?
That's all for now folks! will keep you updated on progress (as you all have done for us!)
Tanya and Ken