4th BCG Maintenance Series #3 of 3 - April 10, 2010

Wow, a blink of the eye and it's been over two weeks since my final BCG from the 4th maintenance series. I suppose it's good that life has gone on and I am 95% recovered from the experience. As I have said (and the reality of which has not fully sunk in), I have no more reason to let any doctor handle my private parts again until September. Five full months of... what? I have not had this much timespace to plan anything at all since before the beginning of 2008. It still feels very unreal. My prior reality is still gone, and cancer and treatments have been my full reality since symptoms and diagnosis. Now that reality can slowly be supplanted by a new one. Not that we can discard the cancer stuff and move on - treatments continue (with decreasing frequency) until the end of September in the year 2020, and that's IF ALL GOES WELL. If not, more surgery and perhaps an extension of that date. Best not to dwell on it, but foolish to ignore the possibility. My friend David F. in England goes in Monday for a final sweep - full anesthesia and multiple biopsies. A night in the hospital and an interminable wait for the results. Odds are decent for a clean report, but he knows it's not a sure bet. His protocol will pronounce him finished after 4 years if all goes well. I wonder if my regimen of milder suffering for longer is worse than his high intensity treatments for a shorter time - if 4 years can ever be considered short!

We had a late-ish appointment this time for the BCG - 10:15. As the doctor answers questions and addresses any complications during the morning, it generally means that later appointments are much more likely to be delayed. And so it was this day. A longish wait in the very busy lobby waiting room, and then finally shown to the treatment room at 10:50. Urine sample given and cleared, and the nurse (after checking my 1/3 dosage) asked me to get ready on the table. As a veteran to all this I inquired if I was next, only to find that there were 2 others before me - about 20 minutes more wait. I asked if she could let us know when next. A tiny look of annoyance crossed her brow before agreeing. It is not a big deal for them, as they put a magnetic sign on the door to signify who is next - always staying a step ahead of the doctor. I settled in for the wait and was surprised 30 seconds later when Dr. Hopkins strode in and exclaimed, "You're not ready!" I responded, "I'm not next." He indicated that he knew that, but did not want to keep me waiting, since I was a veteran at all this and would be quick. He was correct in his observations, and I had dressed for the occasion in sweat pants and a loose surgical scrub shirt. So I made myself ready and assumed the position (supine) on the table before he had his hands washed and gloves on!

Had the instillation completed quickly at 10:59, saving us at least half an hour of waiting. He then realized it was my last trip for a while, and thoughtfully paused to look at my upcoming schedule. We agreed to delay the CT scan from the end of August until the end of March next year. We also discussed moving treatment days from Thursday to Friday, since my company now considers these medical events to be "Vacation" rather than "Illness." He works in the office on alternating Fridays, with surgery at a smaller hospital on the others. We set up a plan to have an exam on Thursday, then BCGs on Friday, Thursday, and Friday following - consuming 5 vacation days instead of seven. I take the entire day of the exam off, not because of discomfort (though pissing fire is no fun), but the mental stress makes me pretty much worthless for work. Dr. Hopkins also told us that his family would be traveling to China to adopt a baby boy with a medical problem late in the summer, and that trip may cause a month delay in the treatments. No way to know before it happens. Anyhow, with this plan in mind we proceeded to the front desk to schedule it all in. We found that fitting the plan to the office schedule was difficult anyway, so we ended up scheduling the second of the three BCG treatments with one of the physician's assistants - Liz. She did an instillation before and did a professional job despite my discomfort with the situation. This approach seemed better than a radical reschedule, so it's the plan for now. In any case we will not be dealing with Regan, the ignorant and incompetent other PA in the office. The updated treatment calendar is below:

And now back to my original theme - is it better to feel horrible for a short time, or just be miserable for a longer time? This set of choices in reality gives us a wonderful illustration of the Morton's Fork conundrum. Both choices are pretty much equally bad. My BCG response seems to have migrated from the former (truly awful for a day) to the latter (mild misery for 2+ days). While the pragmatist in me might prefer to get it over with quicker, the rational part of my brain tells me that the slower route is more consistent with most people and indicates that the BCG is working as desired. While the first two treatments of this series were pretty benign, the third was a full blown episode of "malaise" - just like happened in the last series. Symptoms started sooner and lasted longer. But nothing awful. And 2 days later back to 80%, 2 weeks later 95%. Even the tiredness has subsided, and I can go back to working 10 hour days (most days) and even consider restarting the hated exercise regimen. The symptom details are more than vague discomfort, but only about 1/10 on the reader nausea scale. The non-squeamish and curious among you can click on the table below to enlarge:

As to what to do with the free time, summer vacations and long weekends traveling and doing something seem to be in order. I have to make sure work gets taken care of, and my attitude needs to relax a bit to even begin contemplating having fun and doing "normal" things for a while. It is a great problem to have!


A Dived Ref said...


Enjoy the whole of the summer off. It will take a while to get used to not thinking about treatments but after all you have been through think of it as a big reward. You'll be able to take the Bike out into the country as well :-)

I am delighted for you.

Kathiesbirds said...

Steve, I am so glad all went well and so sorry I was frazzled the other night when I called looking for your wife. I hope you continue to gain good health. I cannot believe your illness is now considered a vacation. A vaction? Where? In hell?

Thanks for the education on Morton's Fork Conundrum. I had never heard of it but it certainly applies to your situation.