Negotiations and Information - April 14-15, 2008

By the Monday after surgery (the previous Wednesday) I was feeling about 80% of normal. All day I had a hangover headache from the Lortab (narcotic), the last of which had been taken Saturday night. Tylenol (acetaminophen) didn't make a dent in it, but 3 regular aspirins seemed to do the trick. And I still had a drainage tube installed because of the nicked/perforated bladder in TURBT surgery, which I was VERY eager to be rid of!

I still didn't have my follow-up consultation appointment yet, and the lab results should be available today. I planned to call mid-morning and ask about it again. But the Urology Clinic called me about 9AM and informed me that Dr. Hopkins wanted to do a one-week post-surgical visit. "Since he does surgeries on Wednesday, that would have to slide to Thursday this week. Is 10AM good for you?" So they were telling me I had to deal with this tube for FOUR MORE DAYS? I asked her, "Do you understand that I still have a tube in?" She replied, "No. Sorry about that. See you Thursday at 10?" Arrrrrgggggghhhh! I accepted, as there was no point in arguing. Or in arguing with her, at least. I wanted to strangle someone. I literally paced around my office, the living room, the kitchen, sputtering the situation to my wife through clenched teeth. She had a women's club meeting to go to, and I begged for her to please go - no point in the day being ruined for both of us!

So what can a person do in these situations? I analyzed the scenario. For most people waiting until Thursday was not a huge thing, as they had no tubes or encumbrances and were cleared to go back to work on Monday. I already had a note authorizing me to do so. But that note was written for a normal case, and mine was not normal at all, having the bladder perforated. Obviously this situation was rare enough that they really didn't know how to deal with it. I did some quick math - 7 full days past a Wednesday afternoon surgery was... Tuesday afternoon - not Thursday morning! I made some calls - two to the Urology Clinic. First I left a message for the surgical coordinator who had provided the note. Perhaps she would know the routine for these exceptional situations and could provide guidance to the front office. Second I asked to talk to a nurse for some medical information, and I left another message with no specifics. Then I called my original doctor's office back and left a third message asking them to call back for general medical question. True to form, they NEVER called back. The doctor (who shall remain nameless) is very good, and I like him a lot, but his staff is consistently incompetent. Beyond frustrating!

The Urology nurse called back first, after about half an hour. I went over my math, and she agreed with me. A week is indeed 7 days and not 9! And she took it upon herself to change the appointment from Thursday to Tuesday (tomorrow) afternoon! Oh joyous day!!! The surgical coordinator called back next. Having the main problem resolved, I asked her what would be a normal return to work for my abnormal circumstance. She had no idea - it's that rare a bladder gets nicked and punctured by one of their docs, who do dozens of TURBT surgeries weekly. Lucky me! We agreed I should ask the doctor during my appointment. I called my wife and let her know the good news. We were scheduled to meet Dr. Hopkins at 2PM the next day! Even if he would not take the tube out, we would have the lab results and know the pathology and prognosis.

On Tuesday we set out for the doctor's office, arrived, signed in, and were promptly shown to an exam room. Each time I had been in a different exam room. They were very similar, but this one had something taped to the paper towel dispenser. I went over and looked - smelling salts! Kathryn said they probably all had them and I had never noticed. I disagreed. We waited about 20 minutes for Dr. Hopkins to come in. He was all cheery and professional, "Ready to get that Foley out?" While the answer was "Hell yes!" I allowed my intellect to lead the way on this. "We're more interested in the pathology first." He cocked and eyebrow and went with it. "I described to you the best case and worst case scenarios before. Your case is neither - it's right in the middle. The good news is your tumors are non-invasive." THIS WAS A HUGE RELIEF!!! This is because all the cancer is now confined to the bladder, and has not spread outside (metastasized) to threaten other organs and systems. He continued, "Your bladder has 3 layers, and your tumors have penetrated into the middle layer, and they are also quite strong tumors. Treatments range from complete bladder removal to bio-therapy. If we remove the bladder, the easiest thing is to route a tube out your midsection." Such a procedure is known as an ostomy, and I was very familiar with them from my CNA days. And the prospect was unpleasant. And all the blood drained from my head. And I glanced at the paper towel dispenser and smelling salts. Now I knew why THIS room was different.

Kathryn was quick to notice, and interjected, "You wouldn't do that at his age?" The doc replied, "Not typically. Bladder removal was not how I was trained, and we reserve chemo and radiation for those that can't handle the surgery. If you are 80 years old, these can buy you plenty of time. But at your age we would probably recommend bio-immuno-therapy. He went on to explain in detail (found here - 3 out of 10 on the gross-out scale), and it's better because it specifically targets the cancer cells and uses the body's own defenses. Like anything there is a small risk of a big side effects, and large probability of discomfort in the short term. But it will likely just be a big nuisance. And last for a while.

The real question is how aggressive the cancer is. We know how far it went (into the middle layer) and how strong it is (pretty strong), but we don't know how fast it grows. My tumors could be recent, or the product of years. If the cancer is slow growing, the therapy can likely stay ahead of it and ultimately beat it down. If it's fast growing, such measures are postponing the inevitable loss of the bladder, and you realize that discomfort for nothing. So guess what? We get to go back to surgery for another TURBT to do biopsies to see how fast it's coming back. In 4 weeks - on May 14! 10 days before my 49th birthday! (For those of you shopping for presents, please be advised that I have expensive tastes and am now back to a normal life expectancy.) This time the doctor plans to do the chemo for a coupe of hours (reduces recurrence probability by 10%) and NOT to puncture the bladder. We had a candid conversation on how it happened, and lessons were learned to almost guarantee it would not happen again. Good enough, and no hard feeling on my part.

Next he brought in Gloria, an attractive, young, female nursing assistant, who would be removing my tube. Kathryn immediately volunteered to leave the room. "You are going to leave me alone with her?" I asked. "She is a trained professional, and it won't take long." Gloria was just as uncomfortable and also wanted Kathryn to stay, so she did. Three minutes later the damned tube was out. I felt like dancing! But I won't dance for 2 reasons: 1) I look ridiculous when I dance and it makes my wife giggle uncontrollably; and 2) Things are slightly tender inside, and there is still blood and occasional clots coming out in the urine stream. Doctor said that the blood is not a concern at this level. After two blinks and three signatures the surgery was all set up and scheduled. I had just done the exact same paperwork 10 days earlier, so it was all too familiar. Today was tax day, April 15 - the perfect day to get such news...

My official staging is T1-G3, T1 indicating the tumor got into the middle layer, and G3 which is the strongest non-invasive state. Not great, but not awful! The biggest thing is the uncertainty is reduced, and the range of possibilities is MUCH narrower now. It's no longer a matter of life and death, but it's still a battle for the bladder. And the outcome is very much in doubt at this point. I will have surgery on Wednesday, May 14. The lab results will be available on Monday, May 19, and we hope to meet with Dr. Hopkins that day or the next to see what he recommends. Virtually everyone in the know has insisted that whatever he says should be evaluated for a second opinion, so we are spending some time doing research on who, where, and how to proceed with that. In the meantime your prayers (and positive thoughts) are appreciated.

I have the doctor's permission to return to work as normal next week, and to work from home the balance of this week. So other than having to be careful to schedule things around treatments and miss a day now and then for immuno-therapy in the future, all should be relatively normal. I finish off the antibiotics on Thursday, and will definitely have a nice bottle of wine on hand for Friday evening!

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