So now it has been time to try to get a grip on the nature of my peculiar visitation of the disease. It presents a bit of a quandary. If it had been TaG1, no dilemma: keep the bladder, pursue a disciplined maintenance program, and outlive the disease. If it had been a T2G3, say, also no dilemma: the result, probably sooner rather than later, is going to be a bladder removal and reconstruction in order to defeat the cancer before it can progress beyond the bladder and become life-threatening. But a TaG3? Which side of that will prove to be the fundamental characteristic of the disease as it has manifested in my bladder that should guide my future decisions – the Ta side, or the G3 side? They are unlikely to continue in stalemated equilibrium for long – if, indeed, they are even doing that now; the upcoming TUR will provide some evidence regarding that. Which side will turn out to be dominant? For how long?
Obviously, as time goes by and we check how the disease is behaving and responding to the treatments employed, we will develop more evidence pointing to answers to those questions (bearing in mind that they will never be certain as long as I keep my bladder – the statistical trajectory can develop in one direction, but hidden factors can ultimately reveal that my individual case has always been fated for another).
This is one of the greatest benefits, for me at least, of this forum. It has turned out to be a great place for exploring these questions and the best way to pursue and evaluate them as events proceed and decisions need to be made. To be sure, it also offers plenty of bracing examples of people with great courage, composure, and insight. Whatever blows the future offers, these will serve as a strong and comforting bulwark against them.
13 July 2006:
My second TUR was scheduled for yesterday, but the day before, on the 11th, I had to go to the hospital with a case of severe food-poisoning. The IV took care of the painful muscle spasms, which I’ve never had with food poisoning before, and which reminded me unpleasantly of my experience, about to be repeated, with the catheter. However, it never progressed to diarrhea, so my uro said we could go ahead with the TUR as scheduled. The ER folks had been concerned about higher than normal levels of blood that showed up in my urine sample, but my uro said that wasn’t an issue, since he was going in to look at that issue, anyway.
So, yesterday went in for the TUR. My wife and I showed up, as instructed, at 8:30 am to be put in my room and prepared for my 12:00 surgery. However, it turned out that, due to some renovation work, they didn’t have a room available for me, and they directed us to a waiting room and told us they would call as soon as a room was ready, probably by around 11:00 am. At 11:45 my uro was causing a bit of an uproar because he didn’t know where I was. They found us in the waiting room (I had kept my wife from inquiring into the issue because I wanted to see how tightly woven were the checks and balances in the hospital’s procedures – not very), hustled me down to the cardiology post-op room to prep me for surgery, then rushed me in to the surgery.
I have to say that all the technicians and doctors displayed, as they had at the first TUR, a typical, warm Turkish instinct for hospitality, welcoming me to their facilities, offering their wishes that I recover, bestowing me with genuine, wide smiles and touching me reassuringly on the shoulder or foot as I was wheeled by them. These are people who did or did not have anything to do with my case. They were just giving natural expression to a key element of this tightly woven (more so than the hospital coordination procedures) culture, extended to everyone, but especially to me as I am obviously a guest.
In any event, the surgery went fine, and I was wheeled up to a room that had finally been prepared for me. My doc came in and told us, as he had told my wife while I was still stabilizing after surgery, that he had found a few "mini" tumors on the site where the previous tumor had been removed. He said these were not residue, but were a recurrence. He removed them, took a broad scoop across the base of the original tumor for another biopsy, and cauterized the wound.
We had initially planned to let my bladder recover from this TUR for 4 weeks, during which time my uro had a vacation scheduled, as did my wife and I. But because of the recurrence, he said he wanted to start the immunotherapy as soon as my bladder might be ready, in about 10 days. That brought up a discussion of how to deal with the vacations – cancel? have one installation done here, a few in the States, and the remainder here? have them all done in the States? My uro was very open to any of these solutions, actually, including having them all done in the States. He writes his surgical reports in English, so I don’t have to translate those, and he said he would give me the video recordings on disc he made of both TURs for my doctors in the States to review.
Then, my wife and I spent the day and evening talking about our options. I was at a bit of a disadvantage, here, because most of the time my jaws were clenched fighting the intense discomfort the catheter seems to relish giving me. So, it seems that at the end of that discussion I have agreed to go to the States a week earlier, and to stay a month or so longer than initially planned. This will allow me to do the 6 weeks of BCG therapy there and to get a cystoscopy check-up to determine if it was effective. The answer to that question will reveal future courses of action for us regarding how – and where – we will address my therapy. We spent a good deal of time exploring ideas about each of those possibilities, also, and the experience in this forum was a major help in that regard.
The pathology report should be back early next week; will post its results then.
17 July 2006:
The pathology report came in early this afternoon; went over it with my urologist. It confirmed the presence of the two "mini" tumors, both non-invasive, papillary, and grade 3. No lymphatic/vascular invasion, no CIS. The biopsy material also came back clean.
Will be heading to San Diego this weekend, where my treatment will be taken over by Naval medicine beginning on Monday, a week from today.
Will continue to post results from there.
26 July 2006
After a difficult trip that took two days instead of just one (due to JFK’s inability to schedule international flights properly, and Delta’s inability to manage that), arrived in San Diego, and was seen by internal medicine at the Camp Pendleton Naval Hospital on Monday, 24 July 2006. The next day (again, after a few misunderstandings about how quickly I needed to be seen, rapidly resolved), I was given a referral appointment in the urology department of the Navy Medical Center San Diego. The doctor I have been assigned is the same one who did the telephone consult with me while I was still in Istanbul in the middle of June, after my first TUR and before my second one.
Saw him today. He quickly went over and accurately absorbed the material I gave him from my treatement to date (my Istanbul urologist even gave me CDs of the video taken of the procedures). He immediately asked if any CT scans or similar efforts to check for escape had been done in Istanbul (they weren’t). He also asked if a particular method had been employed (I forgot the term he used) where, after doing the resection end of a TUR, they release a dye up into the urinary tract and scan with that (it hadn’t).
He decided to do a cytoscopy that afternoon, before starting the BCG. He found some formations around the perimeter of the resection site of the previous TURs that he said could be nothing, maybe just polyps, but that nevertheless looked suspicious to him.
(Continued below in 27 July 2006 post)