First Post? Sort of…
Below is basically the first email I sent to my immediate family concerning the information I got from the various Doctors we talked to. Rather than try to reword it for a blog post I thought – the hell with it… just copy and paste. So there ya go….
Captain’s Log: Star Date 20121111
The aliens in white coats have met with us and imparted their wisdom. Interestingly enough – they each have varied opinions on the course of action required. However, through the use of the universal translator and the unassailable logic of Mr. Spock, we now have some coordinates for our journey.
Starting Tuesday, November 11/13, I begin a course of weekly chemotherapy lasting a minimum of 5 weeks (2 weeks on, one week off, 2 weeks on.) [ Correction: this actually means 12 weeks – each course of chemo is 3 weeks – not the single week as I thought.] After the four treatments they will do a CT scan to check progress. We may do two more treatments if they think it is needed (right now it is just a question mark and 2 out of 3 don’t think I need it but better safe than sorry I think) and if I can handle it physically. They all seem to think that it won’t be too difficult because of how “healthy” I am. (Side note: If I’m healthy then the average 50-year old man in the US is in a world of trouble!)
According to the Drs. the side affects are as you would expect – fatigue, possible short-term and long-term damage to other organs such as liver and kidneys, nausea and hair loss. The Drs. don’t think I should have any real concerns. Not real worried about the hair loss but the nausea bothers me so I am looking into medical marijuana prescriptions for that – really – it’s for medicinal purposes only! 😉
Once the chemo is done then we wait anywhere from 4-8 weeks before the surgery.
We’ve been getting 180 degree different input from the first Dr. on the surgery. As you may remember – the first Doc was pushing hard for an external bag and no chemo. The next two Drs we talked to both said chemo for sure – so we are doing that. And all the follow up Drs said to NOT do the external bag and do the neo-bladder. They said it wasn’t nearly as bad as the first doctor said and that the long-term issues are really quite minimal. In most cases (80% +) there are no issues at all after the first year. We are pretty convinced to go that route right now. The net-net of that is I would pretty much function normally – they just build a new bladder out of intestines and hook all the existing plumbing up to that. For you weirdos out there I can go into more detail if you need it. One thing they did bring up is that when they do the surgery they check the urethra for cancer and if there is any in there, then the neo-bladder isn’t an option and they just to the external bag. They can’t know that until they go in so even if we plan on the neo-bladder I won’t know until I come out of surgery which I will have.
The only thing left to decide is whether to do it robotically or “open.” Again, some conflicting information on which is best. One Dr. said the recovery time for the robotic surgery isn’t that much different (maybe a couple of days) but that needs to be weighed against a bit better result from an open surgery where they can see better and potentially get more of the lymph nodes out and make sure there isn’t any cancer left after the surgery. In both cases there are pretty big wounds (even the robotic surgery has to have a 5-6 inch incision to get the bladder out.) We have few more meetings scheduled on that issue in the coming weeks. The bottom line is we don’t need to make that decision for at least the next 90 days so I’ll have more info after we get a bit deeper into the discussions.