We Interrupt this Broadcast….

To bring you the latest update. Where to begin? A lot has happened over the past few weeks - too much to try to explain, but it all lead to where I am today. Today is the first day of my disability leave when I am supposed to be getting everything in order for my surgery next week. Instead I am trying to decide if I should go ahead with the surgery as planned or postpone it for a while. I thought I was ready for this, ready to go ahead and lose my bladder- that’s what I supposedly spent the last 4 months preparing to do. And when the date was pushed to the end of July rather than early in the month as I had anticipated, I was disappointed and frustrated. But now that I have taken a step back and re-evaluated the situation, I am glad that all my doctors seem to take their vacations in July.

Last week I received a phone call from my urologist, Dr. Karian. He wanted to talk with me regarding his part of the surgery. We had not spoken since he did the biopsy in January and he was concerned. His exact words to me were that he did not want me to wake up and say “What did I just do??” This got me thinking and we decided it would be best if I were to come in and discuss this with him face to face, which we did the following morning. He wanted to explain in detail each of the options they would consider when hooking me back up after removing the tumor and bladder. They are:

1.Remove the bladder and connect the urether to the colon – which would mean all fluid would be processed through my colon, thus increasing my diarrhea.

2.Remove the bladder and connect the urether to the surface of the skin - very difficult to do as the urether is very thin and it’s near impossible to get an appliance to attach which means leaks are common.

3.Remove the bladder and connect the urether to the surface with a stoma created from excess bowel - no one knows if I have enough bowel to spare even this small amount. And according to my gastroenterologist removing any piece of my bowel will irritate it, set off the diarrhea again and chances are it will not ever heal nor slow down.

4.Remove bladder and urether and insert a tube into the kidney (nephrostomy) – chance of infection is great and the tube is permanent and has to be changed every 2 months (a several hour procedure that has to be done in the hospital)

I knew all of these, but it was good to discuss their pros and cons in detail with Dr. Karian. He also was able to add a 5th option – after scoping me he felt that he “might” be able to save a portion of my bladder and leave me with a very tiny but still internal bladder. Considering he felt that the bladder I currently have would not be practical for me that it would too small and I proved otherwise, we wonder just how many times I can beat the odds. Though at first this sounds like the best option - it’s not without a fair amount of risk and Dr. Karian is not certain he could do it. I could quickly discover that the bladder was too small, find myself cutting back on fluids thus dehydrating myself. And then I’d have to have yet another surgery to remove it when it turns out to be too problematic.

I thought I was ready to make a choice – or to be more accurate, to let the doctors make the choice once they were inside and could better see what was happening. I spent the last 4 months readying myself for this – making jokes like let’s have a “Bye Bye Bladder BBQ”; how I’ll now have a “wooden leg” and could drink a case of beer without ever having to leave the table; how I’ll be able to pee standing up now…etc. But I realized that other than scheduling the surgery and making my plans for my disability leave from work that I hadn’t really prepared myself. I chose to go ahead with the surgery because there are no other options – when I ruled out Proton Beam, Chemo, Radiation, etc, surgery was all that was left. So I didn’t chose it, I was stuck with it. And that’s not the same thing. I’m going through the stages of grief right now – and I’m stuck in anger for the time being. There’s a ways for me to go before I am at acceptance. And I don’t think I will get there by next week.

Based on this information, Pat and I decided we needed to talk to Dr. Nauta about some other concerns we had – and we thought we should probably talk to the neurosurgeon prior to the surgery to find out if there was anything we needed to be aware of in regards to the nerve. Remember those vacations I mentioned? So I haven’t been able to find out more information. And I feel like I can’t move forward just yet. I haven’t been able to say this in quite some time, but lately I’ve actually felt pretty good. I’ve been able to hike, bike, kayak and just be active. My pain is manageable and for days on end I am to forget about it. Other than some pressure on my bladder I am able to almost forget that this tumor is inside me and growing.

What I would like to do is postpone the surgery for a couple of months – rather than be pro-active I want to wait until I am symptomatic, but I need to find out the risks I am taking if I do this. I know the docs are afraid of waiting too long and having the tumor become inoperable, but I am not talking about canceling the surgery or putting it off for years. Just for a few months – giving me some time to actually enjoy life before making this life altering decision. This surgery is going to greatly impact my Quality of Life – and everyone knows that QOL is always forefront in my thoughts. I’m going to need some assurance that removing my bladder is not going to completely destroy my QOL and I haven’t gotten that yet.

In a nutshell, that’s where things stand. I have spoken with a handful of my doctors, some who are involved in this surgery and others who aren’t and the 2nd question out of all of their mouths was “why are you going ahead with this surgery right now?” I couldn’t and still can’t answer this. I think that it’s pretty obvious I am not in the right mindset to make a major decision right now. Pat and I are meeting with Dr. Nauta later this week and will bring all of this to his attention. I feel pretty confident that he will listen and we’ll be able to reach a compromise.

Thanks to everyone for their well wishes, thoughts and prayers. I will update later this week and let you know what we decide.

Posted by gasbarro at July 21, 2008 07:15 PM