For Wicket

Hi, Wicket. Thought I'd start a new topic for you (and give Arcafan's back :)   )

No questions are silly/mundane. For me, I obsessed over fear of the bag (the catheter). How to change from leg to overnight and the tubing - fear of introducing bacteria into husb's bladder like toxic shock or something. It turned out to be no big deal - at least for me.

So, as far as waiting during the surgery - will you have family with you? I'm sure that will help, although I'm such a loner, I was "mostly" fine without. I worked on my laptop, read newspapers, took magazines, and a book, just in case. Drank high octane coffee - wrong thing to do - wanted to chatter and pace. Find a really good paperback - one that will allow you to mindlessly read - that's all I ended up doing during the recovery and throughout the night in the hospital (when I should have been working - couldn't concentrate!)

You'll have millions more questions - that's why I landed here, so I could ask and get knowlegeable answers from everyone. So, keep 'em coming!

Hello Wicket,

I'm not going to say any of the things your family will experience are going to be easy because they certainly are not, but as a family you will draw strength from each other's support, and you will get through this frightening cancer together. There I've said the word, and yes that word carries terrible power, but I and my family are beating it, and so will yours. Take comfort in knowing your surgeon is using the most advanced technology in the world (the DaVinci Machine). Most importantly it offers the opportunity to be cured.

So let us all try to help your family get through this surgery, and ease some of your concerns. I don't think you can ask too many questions.

We're here for you,

Glen

Hi again Ellen,

I just had my second PSA test (one every 3 months for the 1st year) the score I received was less than .1 this was a conventional reading. I have seen PSA tests score expressed as .01 which I assume to be the sensative readings, and would have come from the latest testing equipment. I'm sure Swimom will have all the technical information on the sensative PSA test. The advantage for me however is that the conventional PSA test results are within 45 minutes, and because I tend to worry needlessly a quick test result is very important. Dr. Engel knows this so before he even gets in the room he says," Your Fine!"

After each little victory comes a celebration, and that would have to be BBQ ribs, slaw, and steak cut fries. Very soon your family will be doing the same of coarse the cusine may vary, but the joy is the same.

Thanks for your kind wishes,

Glen

Glen,

You are right...the traditional PSA has a reliable sensitivity of .1. Your's is less than the relaible detection limit so congrats..whoo-hoo! Party at Glens!!!!

If you had had an ultra-sensitive one done, it takes days longer. Depending on the assay used by the lab, it could be as low a limit as .003. Still only reliable to .01 though, so why make a man nervous? "Any" rise in the first 1-2 years is watched for recurrence. Lab error is the first thing ruled out when a rise pops up. Some never go anywhere and some do.

It all gets down to, is a real rise? Have there been rises in serial PSA's to confirm or rule out a real rise? Has lab error been ruled out? Is it a fast or slow rise? How long since the procedure did a rise occur? Slope, trends, pathology and time from procedure are the things they look at.

Paul's surgeon began by using an ultra sensitive assay so he will continue to do so in all future PSA's. It would be foolish to go traditional after having done ultra's for the first year. The only advantage to an ultrasensitive is perhaps a better lead time in detecting recurrences. Oh boy, longer time to be a nervous wreck because they still aren't going to do anything unless it hits above .4! IMHO, ultrasensitive PSA's have the potential of causing a lot of unecessary stress. Paul served his years having tumor markers drawn already. Testicular cancer is checked monthly in the first year and every other the second year. Then, it's every six months through year 5, then anually. I kinda wish they hadn't started with the ultra-sensitive PSA's.

Now that Paul is back on testosterone his PSA will be every 3 months for the first 2 years then 6 months after that....forever. The only saving grace we have is that a rise should have been seen in July if there was going to be one and his remained at <.005! If he stays clean for a year his surgeon truely believes he will remain free of cancer...since we all know testosterone therapy feeds PCa. Scary but the T has improved his quality of life so much it has been worth a few more gray hairs! Instead of feeling like an 80 year old man he feels almost 50...which he is!

Swim

Hi Glen,

Well you sound to have been pretty close to Curtis in your diagnosis and age.

How long does it take to get back to feeling normal again after the surgery. You said you just started your walking exercises after 6 months and are you contenient now? I think that's one of the most important things that Curtis is worried about...that and getting all the cancer, of course.

We don't have a surgery date yet. We just found out last Monday that he had the horrible C word and have an appointment with a Di Vinci surgeon on September 11th...Guess he'll tell us then when the surgery will be. Ooh I'm so scared for him!!!

By the way...I'm sure you're not a wimp!!!

Hi Glen,

Well I thought I sent you a message, but can't find it so maybe not.

Oh I forgot that you had the hernia operations too. Well you certainly aren't a wimp that's for sure.

I told Curtis about the kegels and he says he's going to start doing them...I also just told him that he won't be able to pick up anything heavy for quite a while. Glad this will be happening over the winter when he won't be tempted to go outside and start a project or something.

He's in good shape already...right now is building his shop in the backyard...he's been hustling because he wants to get it weatherproofed before he has the surgery cause he won't get back to it til spring. When not building he takes walks every day or rides his bike.

He has never been in the hospital for any reason so I'm trying to tell him what to expect since he has no idea.

I'm scared that after the surgery the doctor will come out and say it wasn't all confined to the prostate...that's my biggest fear, but hopefully after talking to the Di Vinci doc I'll feel better about it

Curtis is very calm about it especially since I've been telling about you guys in here and how well you're doing.

Hi Glen,

The urologist is in Boise, Idaho...we don't live far from there so it will be convenient. In fact he just opened a new office in Meridian where we live...hope he can operate out of the Meridian hospital. Where are you from?

Yes he's building a wood working shop, but he doesn't enjoy doing the finish work for cabinets that much, but he can if he wants to. He built me a beautiful spice rack with doors and glass in it.

Hi Glen,
This is Curtis, the other half of Wicket. Thanks for your help, I'll get back to you later.
Curtis

Opps, ...see dizzy! meant to post the above to the other post....

Daveed,

Wish we could tell the children together, but that's not possible..Our son was just her in July so won't be seeing him for a while.  Our daughter lives near by so we'll tell her when we have a surgery date set I guess. I'm leaving that decision up to Curtis as to when he's ready to tell them.  I'm sure our son will want to fly right down here, but we'll tell him there is no need.

Follow-up to a posting on “How many wives get depressed” Thanks GreenAcres for starting a new posting “For Wicket”… I like this idea! Just getting caught up on all the new entries since I've been away for 3 weeks.....   Hi! Ellen,   It is “YOU”   that I am concerned about . You have to be strong for you!!!!   This is part of “your journey” and you must be in good shape for the surgery J   Yes ~ you need to be strong for Curtis but do you realize that this cancer is curable and there is a really good chance that once the prostate is taken out the cancer is gone too.   No one can be 100% assured of being here tomorrow.   Live one-day-at-a-time and enjoy each and every moment!!!   So give yourself a present J   What a GIFT!!!!   One Day At A Time…… Yesterday was history.    Tomorrow is a mystery.   Today is a gift.   That’s why it’s called the Present.   I’m not here to preach about surgery… but it seems like a no brainer to me.   Curtis seems to feel the same way.   So hopefully ~ once you have more information about what’s coming at you … you’ll be just fine.   And before you know it … you’ll be helping the next new member through the tough times.   Unfortunately there will be new members but we can help each other along the way…     One saying that another member said has stayed with me… *can’t find who wrote this* Hand in Hand, Heart to Heart   And as Wittler   “Kate” would say…   STAY STRONG   This is truly a couple disease and you can be with Curtis the whole way through.   From the 1 st consultation to total recovery if this is something the 2 of you want.   I was with Buddy from the time he walked in the hospital until the time they went through the doors to surgery.    I was waiting in his room a few hours later as they brought him in from the recovery room.   The time flew…   It was just me and Murphy and that was my decision.   And then it was the 3 of us again.   Surgery is always a risk.   So ~ I don’t say this lightly.   You deal with what you have to deal with.   We are… Do you risk the surgery, possible complications, cancer gone, and have many years together?   Do you risk not having the surgery and know that the end will not be a pleasant one for your loved one or you and the years ahead always knowing that the cancer is there?   These are very personal decisions and there is no right or wrong answer……   The only answer I can share is….I wanted the surgery immediately!!! And so did Buddy.   It is now short by 1 day of being 5 months since our surgery.    I look over at him while he’s composing a letter to his family to e-mail as soon as I send this to you.   What a wonderful feeling I have in my heart!!!!   I think it’s time for a GROUP HUG J   I truly want to help you through this dark time….   SO remember..   KNOWLEDGE IS POWER... and POWER conquers FEAR!!!!! Too much information at one time can be OVERLOAD and all the information becomes a NIGHTMARE…. So please… take time to step back and regroup.   It will truly benefit you if you do this.   Here’s what your next few months will be like. Appointments, discussions, decisions, and before you know it….. The surgery will be over with J   What do you need to do to prepare???   Guess what?   We’ve helped take some of the worry away…. The answers are right in front of you on this forum.   And we will help you!   See Wittler’s posting “Shopping List for Surgery” See my Bluebird’s posting “Our Journey Sharing is Caring” and “Give Yourself A Second Opinion” and Murphy Our Special Helper” And many more have wonderful helpful hints as to what would be right for you and Curtis.   So ~ hang with us and know that we care.   Hi Curtis J   Glad to see your posting to Glen.     In Friendship, Lee & Buddy  

Bluebird,

Wow you have a wonderful way with words!! 

That's great that he's back to normal in less than 3 months.  I hope Curtis is so lucky.  He's always been in good shape, exercising and taking care of himself so that should help him.  I told him about the kegel exercises and how to tell if he's doing it right, all information I got from this site I might add, and he's been doing them regularly.

I've noticed that Curtis gets up a few times a night to go to the bathroom where he didn't used to have to do that so I imagine that will clear up when the surgery is done and he's "back to normal" too.

Is there anything special I should know about when he comes home from the hospital...I mean I know what I need to buy...I think...and vaguely how to take care of the catheter, but that's about it.

Anyway thanks for being so giving and helpful!!

hi Ellen,

I just wanted to let you know what Jeff and I have learned in the past week (since his surgery). the main thing is that everything seems worse in our imaginations before it happens. Jeff had a radical prostatecomy so he has a 6 inch incision in his lower belly. not one time did he have much pain. I kept thinking that he would be miserable, and he never was. the catheter did bother him because it irritated the tip of his penis, but he kept putting neosporin on it and when he could finally sleep on his side, that was better, too, because the sheets wouldn't rub it. the bags were not a big deal because the hospital sent us home with several and we just used one for a few days, threw it away, then put a new one on. Jeff used the large (night) bags every day and only used the leg bag to go to the doctor's today. now that the staples and catheter are out, he's feeling almost "normal" again. he has actually had complete control of his urine so far today. THAT IS A HUGE SURPRISE! we aren't expecting it to stay that way and he will go to bed tonight with an undergarment and pad (his whitey-tighties as we call them). I think it's important to keep a sense of humor during all of this. I just wanted to tell you that nothing I worried about happened. you sound a lot like me in that you think of all the details. I think we drive ourselves crazy sometimes. :) I think the waiting is the worst of it, so schedule that surgery as soon as you can. take care, kat