Hey everyone! It’s been a little over two weeks since surgery and about a week and a half since I’ve been home from hospital and recovery is progressing well. I apologize for not writing sooner but admittedly I have been in an energy funk and have struggled to focus on much but since so many have thoughtfully asked what’s going on I figured I should share it an update.

Let me start with the big surgery day. Truth is I didn’t realize how major of a surgery this was. I don’t think it really hit me until the morning of the surgery when I was visited by no less than 8 doctors who were going to be the team for my surgical procedure. Probably the biggest reality check was when they asked for my healthcare proxy documentation. With all my procedures I had not been asked for that but had been something I prepared so had that in hand.

During preop it was the normal stuff that you would expect; getting your vitals taken, monitors attached, procedure reviews, etc. The one big surprise for me was that I was going to be intubated during the procedure which means having a breathing tube. I don’t recall ever having one and I must say it sounded intimidating but I was going to be asleep when they placed it and removed it so I tried to take it all in stride. All the staff were fantastic. They were personable, funny, great listeners and most importantly confident and reassuring. As they began the anesthesia I remember getting wheeled out of preop and gently losing grip of Aimee’s hand as I went one way and she went the other. Emotionally it was hard for me as I am sure it was for her but I remember my last words I spoke out to her as I was getting wheeled away, “Aimee, today is going to be a great day!” And then it all went black.

The procedure was a long one, almost 9 hours in fact. I can’t share any personal details of those nine hours because I was out cold on the table but can imagine the anxiousness, fear, and general concern that my family had while waiting for an update on my progress. Aimee chose to stay around the hospital that day. I remember it was a beautiful day and she brought her sneakers to get out and walk, My sisters and parents met her for lunch to give her some much needed company during the long wait. Throughout the day there were a couple of simple updates all of which were positive but I know that they were all waiting impatiently to hear that I was out and have the chance to see me.

The first thing I remember coming out of surgery was complaining that both my arms hurt something fierce and that they felt like they weighed a thousand pounds but more on that later. The time was about 6pm and Aimee finally had a chance to see me in recovery for a few minutes. I don’t remember much other than the sound of her voice and the softness of her hand. It’s hard to explain other than to say that it was the most beautiful feeling in the world. I was alive. I didn’t share much on that fear ahead of surgery but I was scared, very scared, but I survived the surgery and soon would be able to see all my loved ones again. What a relief.

After spending a bit of time in recovery I was wheeled to my room on the 10th floor with just enough time that Aimee and my parents could come to see me before visiting hours were over. Admittedly I was still coming off of the anesthesia and pretty juiced up on pain meds, but I do remember being chatty (shocking) and feeling surprisingly well. After some long hugs, a few tears, and a welcomed kiss goodnight it was time for them to leave and for me to sleep.

Sleeping in the hospital is hard. Lights, noises, activity and general anxiety abound. I had a roommate (three different ones in fact) over my stay and gratefully they were all wonderful but the general activity of the hospital puts even the best sleepers to the test. Over the next few days there were a few goals that needed to be accomplished before I could be considered to be released. Before I share those its probably important to mention exactly what was done.

The short explanation is that they made about a seven inch incision from below my belly button to over my lower abdomen to my pelvic area. This incision was their main working area to remove the bladder and the prostate as well as my intestines. Yes, they literally removed my guts and did so in order to remove a 20 inch segment that would be used to create my neobladder. From there they needed to fuse the intestine back together, shape the new bladder, reroute the ureters and other essential tubes along with removing the bladder and prostate. One note on the prostate is that the doctor attempted to leave the nerves to preserve sexual function although time will tell as to the effectiveness. Once all that was complete they tucked it all back in and closed me up with 35 staples (yes staples, not stitches.). In addition to the main incision, there were two other small incisions, one on my left front just to the inside of my hip bone, and one on the right side just to the inside and a little higher than my hip bone. The one on the left was simply a small tube going to the inside of my body attached to a small drainage bulb on the outside designed to drain out extra fluid in my abdominal area. The one on the right side were two thin tubes that fed through a hole in my side and drained to a bag attached to my body. These tubes were draining from the kidneys and this setup was essentially what I would have had permanently if I didn’t have the neobladder. The last tube I had was a Foley catheter which is placed through the tip of the penis to constantly be removing fluid from the bladder. Given my new bladder is of a new material (intestine), there is also a lot of mucus that passes. So there we are; Three incisions, 35 Staples, 4 tubes, and three bags.

The first day in the hospital wasn’t that bad. I am really pretty good at managing pain and so I asked them to start taking me off of some of the narcotic pain meds. That stuff, albeit a medical miracle, can also create some other issues and I felt like I could manage the pain without it. I spent most of day 1 in bed but did manage to get up and take a brief walk. I was a bit wobbly and uncomfortable but was able to get it done.

Day two was much harder, I was pretty much done with the heavy duty pain meds which was good and honestly the pain really wasn’t that bad. The challenge with day two was that I needed to walk a bit more and start eating a bit which I had no interest. I did accomplish a milestone on day two which was to pass gas. This is a very important milestone as it demonstrates the intestines are starting to wake up. The worst part was that evening I had a horrible bout of diaphragm wrenching hiccups which every time I would have one would just tear at my abdomen which was no fun. The icing on the top was the acid reflux. It was so bad that it generated pretty intense nausea which is not something I deal well with so I needed to get some meds for that but even that made me feel sick. All said that lasted for a few hours and started to wind down as I entered into day three.

Day 3 was a turn the corner day, hiccups were gone, acid reflux was gone, pain was manageable, and I was able to walk much more and even get some stairs in. I still couldn’t eat or drink much but was starting to get better. I was sitting up more and able to maneuver a bit better, all good signs of progress.

By day four I was ready to go home. I knew how to manage my bags and tubes, I could walk unaided and I even got dressed. That said they wanted me there one more day just to make sure so I rested and enjoyed the time with Aimee and my parents who had been there every day with me since surgery.

Finally day 5 came around and I was getting the chance to go home. I could not wait. I was leaving days earlier than most. In fact one of the nurses said that my “recovery was the fastest recovery they had ever seen from this surgery.’ My adrenaline was pumping and so were my emotions. I was both excited but also nervous on what the days, weeks and months would bring but I knew being home would be my best medicine.

Before I left I had the opportunity to thank the staff on floor 10. They are the real heroes of this story. Their genuine empathy and skilled care are what helps so many get through the tough times.

Next stop….home!