Eight Weeks Post-Surgery

Eight weeks later -- 23 pounds lighter and cancer free.

All is well. Recovery still underway and I feel fine. I've sworn a sacred oath that the lost weight will remain off and diet and exercise will be the new focus.

Last week I went back to the hospital with a 103 degree fever. No other symptoms existed. No pain, no nausea, no anything - just a fever. I had a CT scan of my lungs and guts; a sonogram of the neo-bladder and blood work done. All came back normal. But this left the reason for the fever unresolved.

I stayed overnight in the hospital and just today was told that my urine specimen yielded evidence of a bacterial infection in the bladder. It would be eliminated with strong antibiotics - of which I will take orally for the next week.

Other than this episode, all has been smooth and I've had no problems.

"Everything" works! or "Doug got his groove back"!

Prior to surgery, I had only one other hope that surpassed the goal of total cancer removal. My close-second goal was to be able to function in every way I did before the surgery...

Dr. Holzbeierlein paid particular attention to nerve-sparring techniques during my surgery and his skills have saved vital nerves that provide sensation and ability. Whew!

I was told that it may take up to six weeks (or longer) for all functionality to return, but to date, it has been 4 weeks since the surgery.  I'm obviously happy. 

So, if you're a man who has been told you have to undergo this procedure, don't fret too much about performance. Chances are good it will return. Before my surgery, I spoke with 5 guys who had neobladder surgery. All but one had full functionality back - although none within 4 weeks.

Day-time control is normal and night-time control continues to improve.

More to follow....

All tubes are out and neobladder is "activated"!

Preparing to have x-ray of my neobladder - to be filled with the liquid on the tray in the foreground.

Nice socks and slippers, eh?

   This is an x-ray of my neobladder. It's the dark mass (filled with the special liquid) in the center. Look closely and you can see the two ureters (long, dark lines)on top left & right leading up to my kidneys. There are also pins visible - holding things in place.

On Friday, February 5th, I had all remaining catheters removed and the neobladder was "activated".  I had an appointment at KU Med Center with radiology at 2:00 for x-rays -- to make sure it didn't leak. Once filled (which caused some mild cramping and slight discomfort in my kidneys) to capacity, they shot several x-rays and all was deemed leak-free. Great!

Next, I was off to meet with Dr. Holzbeierlein at 3:00. He was pleased with my recovery and said "now, the work begins..." meaning I have to "re-train" my brain to recognize how a neobladder feels when full and be able to completely empty it. He told me to expect all continence to return - but to be patient. "Give yourself one week and you should be fine during the day, and within six months, you'll sleep through the night and it will be as normal as ever."

For the first two weeks, I have to set regular bathroom breaks and go every two hours. The next two weeks, every 4 hours. At the end of a month I should be able to go when I feel the need.

Once he left, his physician's assistant, Debbie, came in to remove the catheters and teach me how to care for the neobladder. Debbie is what I refer to as "an angel wrapped in skin" - just a wonderful, caring and dedicated person.

Here is a demonstration of early techniques for removing catheters.

:)

Catheter removal is always something you want to happen, but the process is nothing I'd want to happen on any kind of regular basis. I took one deep breath in... and let it out slowly as Debbie pulled the Foley catheter out. Yikes!!  Ouch.  Yes, it stung more than I thought it would, but it wasn't torturous. The next step was to remove the supra-pubic catheter (draining from the neobladder through my abdomen) just to the lower right of my belly button. It's removal didn't hurt as much as the Foley catheter, but it left what looked like a bullet hole. Debbie put a simple sterile gauze bandage on it with bedadine and said it will heal up on its own. Two days later, and it's already closed and forming a scab. Nice.

So the neobladder is now doing all the work of my former bladder. I'm able to empty it and continence is fine - not perfect - but fine. In a week I expect it to be normal.

Here is a close-up of my neobladder.

Ha-ha!  Just kidding. But I think it does have this general shape.

For the next week, I have to self-catheterize twice a day. Debbie taught me how to do this and I did it successfully in the doctor's office on Friday. I've done it morning and night ever since. Contrary to the images and creepy thoughts that one would normally have (including me!), the process is not painful. Really. No one was more surprised than me how easy it is. Debbie gave me lidicane (spelling?) jelly to subdue the discomfort. It worked. The sensation is just weird - not painful. It's a very thin rubber hose. Once inserted, I have to inject sterile water and flush the neobladder (injecting the water and sucking it out with a large syringe) to keep it clean and ensure the urethra remains open and free of scar tissue. After doing this twice a day for a week, I do it once a day for a week and then self-catheterization will be a thing of the past.

So, being FREE of all tubes/catheters is wonderful! I can actually sleep on my side for the first time since surgery (17 days) and that feels great! Not having the uncomfortable tubes hanging out of me is such a relief I can't even tell you.

What I have to do now is lots of Kiegel exercises and regain control of body functions. I expect to have this accomplished within a week. I'm actually going to try to return to work this week and put in 4 hours a day and then full days the following week. We'll see how that goes.

This is me doing my Kiegel exercises.

More to come... stay tuned.

First week home

I've been home since January 25. It's been two weeks since the surgery. Vast improvements have taken place:

• Intestines began calming down at the end of week one - about 10 days after surgery. No more cramps, gas pains or soreness.
• Appetite has been slow to return, but the taste for food is okay. In other words, I enjoy food, but eat in much smaller proportions. To date, I'm down 20 pounds and still losing 2 lbs per day. No complaints.
• Bowel movements are regular and normal as of day 11 after surgery.
• The catheters are still bothesome. Not necessarily painful, just a bother. They are scheduled to be reomoved this Friday - February 5th!
• My neobladder will be "activated" on Friday too. This will be awesome as I will be "free" of both catheters.
• I'm looking forward to be able to sleep in any other position rather than flat on my back like I have to do now.
• There is still tenderness at the incision site and it hurts to cough or sneeze... but I grab a pillow and hold it tight to the gut and it's bearable. 
• I'm planning on going back to work next Monday - at least for a few hours each day. Sitting around the house (although I know it's necessary for healing) is b-o-r-i-n-g!
• My strength is nearly all back... if it were a bit warmer outside, I'd rather enjoy walking in the yard or around the neighborhood.

We've received much support - kind words, offers of prayer, food, company and encouragement from family and friends. We are grateful for all of you.

More to follow...

Home - Day 4

First of all, this post contains pictures of my surgery. They are graphic, so if this kinda thing makes you queasy, you've been warned.  They are here to educate.  Dr. Holzbeierlein had his chief resident take them with an iPhone. I find that somehow amusing... and they turned out well.

Today is day 4 at home and I feel fine.

For the past two days, I've cut way down on pain medication and haven't had any since yesterday morning. The stuff makes me nauseous anyway.  They say the intestines are the "laziest" organs we have. Since having 18 inches of my small intestine removed to create a new bladder (neobladder as it's called) my bowels have been "waking up" since last Wednesday and are just now beginning to calm down. Lots of gurgling and rumbling. Today I can honestly say that the only slight discomfort I have is at the incision site. The gas pains and intestinal rumblings have subsided and although they remain, they are far less bothersome and intense.

Living with two sets of catheters is humbling, interesting and requires some work. No doubt it cramps my style and mobility is limited, but there is no pain and aside from the initial psychological jolt one gets from seeing them for the first time, they really are no big deal.  I have to laugh at myself... for most of my life I've made jokes about the fear of catheters. I mean, yikes -- the entire mental imagery of catheterization stirs up images of frightening dimensions for most any man. I would joke in my youth that if I were ever to face this, that I must be rendered unconscious before anyone would put something in my, up my, well, you know what I mean. Guys, the truth is, it's no big deal. It's just an inconvenience.

The tubes all come out on February 5th. Only 8 days from now.

My appetite is not completely back. I eat very little. But I drink a LOT of water. Doctors say it will take six weeks for my appetite to return to normal. As of today, I'm down 18 pounds since surgery. I've sworn an oath to that the pounds I lose will not come back. Better diet, less proportions, more exercise are all the plan.

Thanks for following along. In case any of you doubt prayer... don't. I'm cancer free. Prayers work!

Now... here are the pictures....



Photo 1: Dissection down to the bladder, exposing the contents of the pelvis.

Photo 2 & 3: Prostate and bladder








Photo 4: Pelvis, sans bladder/prostate

Home at last...

The Doctors started coming in at 5:45 this morning, by 7:15 Dr. H had come in with the good news that Doug would be released today!  Lots of stints and I.V.'s to be removed.  Switched from the morphine PCA to pain meds by mouth. Chicken noodle soup for lunch and 8 hours and 15 minutes after being released, we were finally home!  Doug still has two tubes which create a bit of a "walking obstacle" and need to be flushed 2-3 times a day, but they are already manageable and we think we'll get better with a little practice.  Food is going okay, he isn't too hungry and food tastes a little different as Dr. H said it would.  Everything will just take a little time.  Doug's glad to be home and while he's looking forward to sleeping in his own bed tonight, we're truly grateful for all the great Doctors and nurses and tech and assistants that helped us so much during his stay.  Thank you all! 

close up of the stint...

OMG Did this come out of ME?!?!?!

Dr. Woodruff removed this approximately 2.5 foot long stint (one of two) in preparation for going home!!! The stint came through the opening in Doug's side, from where the neobladder now drains, into the neobladder, up through the ureter and into the left kidney.

Day #5 A.S.

Wow!  What a difference a day makes!  Much better today.  Here I am enjoying some yummy cream of chicken soup! I also had cream of wheat for breakfast.  I've been getting up pretty well today and finally had success in the bathroom!  This is an important step toward going home.  Hopefully I will get released tomorrow. 

I even learned how to flush the neobladder today... it's not that bad of an ordeal and only continues for about two more weeks.  But, doing so twice a day is important for the neobladder to heal. 

It's good to be feeling so much better, I'm back to flirting with the nurses and joking with the staff. I've really turned a corner today, I even shaved!  Thanks again for all your thoughts and prayers!  I'm ready to go  home and face the next chapter.