16 Days Post op rc

4.5 miles in 1 hour 12 minutes...Congrats! That is quite an accomplishment! Congratulations.

Funny that you mentioned Rum; ever since the surgery, Shawn hasn't had a taste for any alcohol at all. We are both social drinkers and he used to enjoy beer & bourbon, but says now it doesn't even sound good to him. He said that he hopes it comes back soon! He could stand to regain some of his "beer belly."

Congrats on your big accomplishment.
Steph

Thank you for the thank you. it's funny I was a buurbon man in my 20's

Tim

Hi Tim & Kathy,

We went back to Indy yesterday for a follow-up appointment. Today is 7 weeks since the surgery. Dr. Koch thinks that Shawn is doing great and is pleased with his recovery so far. As you probably read in my messages to Donald, Shawn has no problems during the day, no pad needed at all, but nights are still a struggle. Although, Shawn is emptying his bladder much faster than he was just a week or two ago, so the night time interruption is shorter and Shawn is not having trouble getting back to sleep. I am happy to report that we have NOT had to go to separate beds; he is hearing the alarm much faster and all around, everyone is getting more sleep!

We will not see Dr. Koch again until August. He will have a CT scan then. Dr. Koch said not to be alarmed, just routine; I guess we may as well get used to that!

Shawn has not had as much success with his nerve sparing as you did. Dr. Koch said not to freak out about it because sometimes it takes up to two years to regain the ability to get an erection. I think Shawn hearing Dr. Koch say 2 years freaked him out more than anything! Dr. Koch asked Shawn if he was getting anxious about it (he is) and if so he could prescribe something that may or may not help. He gave him some samples of Viagra & something else, can't remember the name, same kind of thing though. He also gave him a penile injection sample, although Shawn is a little leary about injecting himself. I bet before it is all said & done, he will try it.

It is very encouraging to have a great Dr. like Dr. Koch. He is so thorough. He told Shawn that if this doesn't work, to let him know & we will try something else. And if that doesn't work, we will try yet again, something else. Maybe even just alter the amount of medicine. I think that by Dr. Koch telling Shawn that, he (shawn) can relax a little bit, knowing that this is not the end of the road.

One thing I have been wondering about your recovery...I know that you are doing a lot of exercise, walking,watching your diet etc. Did your Dr. recommend that you do that because of the neobladder or is that just for your own, personal well being?
Shawn does a lot of walking at work because he works in a restaurant & there is a lot of running around. We take our baby on walks around the neighborhood and play basketball with my nephews and such, but Shawn doesn't do any regular exercise. I remember you said you were trying to drop some weight, so maybe that is your reasoning. Shawn isn't loosing weight anymore, but he is so darn skinny, weighing in at a whopping 151 lbs. Dr. Koch said as long as he isn't losing, he is OK. I asked Koch if Shawn should be doing any regular exercise and he said he should "do what he feels like doing." Just curious as to if you feel the excercise is a necessary, life-long component to having a healthy neobladder. Any thoughts?

I hope all is well with you both. Talk to you soon. Steph

Hi Steph,
I do feel the exercising has been a big part of my recovery just walking won't do it he has to get that heart rate up and keep it there for at least 20 minuets I do 5 minuets of slow walking then 60 minuets of fast than 5 of slow it will take a while to build up to that. Circulation is the key to getting the body back after all an erection is nothing but blood being stored. Dr. Smith gave me 100mg of viagra 10 of them he said to take it at least once a week and with time it would help I only needed 3 although I was always able to get an erection it just would not last long at first. Dr. Smith told me he has so many ways of fixing that and one of them will work for sure so tell shawn not to worry if it does not come back they can make it!!! The biggest thing is not to worry about it you guys will be messing around and before you know it there it is. Kathy knows me so well and would do things to me that helped make it happen without her I don't know where I would be at this stage. it is a fun game to play trying to wake up the big guy and as long as he feels no preasure for it to happen it will.Try being a little creative and see what happens but have fun with it and don't expect to much at first. I think I would pop a lot of pills before I gave that shot a try I have heard that it does work and in fact sometimes too good (4 hour eections) bottom line is it is just like the control thing it will happen when it happens Just don't let that stop you from trying.

Tim & Kathy

How's things going? please give us a update on Shawn,

Tim & Kathy

Hi Tim & Kathy,

I was just thinking about you guys yesterday!

Things are going great for Shawn. He is back to his regular routine & work schedule. His daytime control is 100%, although it is still time consuming for him to empty his bladder (5-10 minutes - no big deal). Nighttime is still a challenge...most nights he wakes up wet IF we don't set the alarm. Still, not a big deal. I don't think it is bothering him too much because he is not really as strict about not drinking in the evening as he was. I think since we have been setting the alarm, he is used to waking up because most nights, he wakes up the alarm before it goes off. However, on the few occasions we have forgot to set the alarm, it happens to be the nights he doesn't wake up. Go figure! We have a plastic mattress pad under our regular mattress pad and he has this liner thingy that is quilted to absorb if it gets wet.

Shawn is continuing to have difficulty in the sexual department. We are following your advise and trying different things and not making it a big deal. He has tried the viagra and it was not successful. Dr. Koch explained that it is not a "magic pill," that there has to be something there for it to work with. He is going to continue to try it because Dr. Koch said one day it will just come back! The penile injections work, though. Shawn said it is a pain in the ass but definitely worth it. Not the most convenient.

Shawn still isn't doing any regular exercise. We go for walks and he plays basketball but that's about it. Hopefully once Spring sets in we will both be able to get out and exercise more. He doesn't seem that interested in it and Dr. Koch didn't emphasis the importance to Shawn, so me yapping at Shawn about it isn't really going anywhere. He is still pretty skinny too. Weighing in at a whopping 151. His appetite is great; he is eating me out of house & home.

Unrelated to post-cancer business...
Shawn got a promotion at work! We are both really excited. This has been something Shawn has worked for his entire career and I was so scared that he was going to miss his opportunity because he was sick. Not that his company would do that intentionally while he was sick, but someone left WHILE he was off and I was afraid they would replace him while Shawn was recovering. Thankfully, they waited until he was healthy & back. We also celebrated our little boy's first birthday with a huge party. It was probably way too much for a first birthday, especially since Patrick won't even remember, but I felt like we had A LOT to celebrate.

How are things with you? Do you still struggle with nighttime? Dr. Koch said one day it will just figure itself out one day, maybe that already happened for you. Something else I have often wondered about you, do you/did you ever smoke? Shawn was a social smoker, smoking when he drank. His parents have smoked all of his life and still do. I never knew that smoking was related to bladder cancer until Shawn was diagnosed. I always thought lung cancer, never bladder. What a crappy way to find out. Anyway, just curious if smoking was a factor in your cancer.

Hope all is well with you both. I am looking forward to hearing YOUR update!

Stephanie

Hi Steph,
I am happy to report that all is back to 100% for me it is like it never happened. yes I did smoke since I was 10 years old but my doctor said that had very little to do with it my bladder was defective from the factory and smoking only brought the cancer on sooner than latter. Happy birthday to Patrick and a big crongrats to Shawn on the promotion.It's been 6 or 7 weeks since I needed to wear anything or have anything on the bed my quess is that Shawns Sphincter muscles have not yet come back to full power and he will not have night time control until they do. He has to do the start stop thing to get those muscles back in shape.I glad to hear that the shot works hopefully that will come back soon.
It was nice hearing from you

Tim & Kathy

Hi Steph,
Kathy and I were talking and got us wondering if the chemo has anything to do with Shawn's slow recovery in the sex department I didn't had chemo before my surgery I will ask Dr.Smith about that when I see him on the 31st of this month.

Tim & Kathy

Hi Steph,
I asked Dr.Smith if having chemo before your RC could delay the effects of the nerve sparring and his answer was yes it can. I got another clean report and all is well but Kathy got bit by something and was in Vandy for almost a week she is doing much better now and is back to work.

Hpoe all is good for you guys

Tim & Kathy

Hey Tim & Kathy,

I am sorry to hear that Kathy was having trouble. I hope it isn't anything too serious.

As for chemo & sex, Dr. Koch elaborated on that as well. He said it could take up to two years (freaked Shawn out) for things to work naturally. That is why he was eager to go ahead and try the injections & pills. They are working OK, sometimes better than others, but we are just taking it one day at a time. I have encouraged Shawn to call Dr. Koch if it too bothersome for him, but he is insistant on just waiting until his next appointment in August.

Other than the sexual side affects, our life is pretty much back to normal. A couple of weeks ago, Shawn was at work, changing a light bulb & FELL OFF THE LADDER! I almost killed him! He couldn't understand why I thought he shouldn't be on a 10 foot ladder just 4 months after a major surgery where he lost 2 of his organs. Luckily, he only spranged his ankle, but I almost killed him. I used your line - something about how he may feel 10 foot tall & bullet proof. I think I got my point across & doubt he will be doing much of anything involving a ladder anytime soon.

We are gearing up for the Kentucky Derby this weekend & are looking forward to a fun day at the track. Let me know if you have any tips! Glad to hear all is well with you & I hope Shawn gets the same report in August.

Steph