The Four Steps of a BCG Treatment - plus 4th BCG Maintenance Series #2 of 3 - March 19, 2010

Two BCGs down and one to go! I am really pleased to be telling you that yesterday's treatment, while harder than the week before, was still easy-peasy. No dramatic symptoms during the special handling period, and not too bad after. The morning of the day after brought mild hangover symptoms again - an almost headache plus exhaustion and mild dehydration, but this week is perhaps slightly better than last. I don't feel awful today, but this does not mean that I feel OK. I feel tired and not quite sore - sort of the way you feel after day of yard work - but not in a good way. By mid-afternoon I was stiff enough to take 1000mg of ibuprofen, and that has helped a lot. I could have taken it earlier, but I prefer to know how bad I am feeling first. This is a service to you - dear readers!

This mix and match of side-effect severity is puzzling, and an idea has been bouncing around in my brain for a bit. Now I think it is taking shape. I had not really solidified in my mind the fact that for me there are four basic phases in a BCG treatment, and each one can have variable side effects. And just because one step is severe, it does not indicate that any of the others might or might not be. Let my try to elaborate.

Phase One - BCG Instillation and Holding Period - 2 hours, lasting from the time the doctor puts 50cc of BCG solution into your bladder until the first time you are allowed to pee. Other than the discomfort of the tube insertion (and sometimes removal), there is no pain associated with BCG instillation. It might as well be water. Since we all know that THIS water is full of toxic bio-cooties, it is reasonable to suppose it will burn - either immediately or soon after - but this is not the case. If you have followed protocol, you will not have had any fluids in the 4 hours prior to instillation, and you will be thirsty. I usually don't eat or drink at all after midnight or 1 AM even if my BCG will come as late as Noon. My doctor says you can begin drinking fluids immediately after the instillation. While this sounds good, caution is in order. For all but the tiniest of bladders, 50cc is not much fluid. But one must hold it for two hours, and drinking too much immediately will make that difficult. I drink one quart slowly over the first hour, and then slow down a bit. For the second hour I drink another quart, but I wait until the last 20 minutes before slamming most of it. Usually this amount leaves me primed and ready at the 2 hour mark. By the time 15 minutes are left, there is some tingling/burning and sense of urgency. Lying flat seems to help - standing or sitting are the worst. Usually I can hold out, but sometimes have to go 5 minutes early. Then sweet relief. Sometimes there is burning and/or cramping associated with the first urination, but usually not. It's never too bad compared to the relief found in emptying the bladder. But afterward there is always a burning discomfort in the now-empty bladder, which can be offset by continuing to force fluids, again slowly, about a quart per hour. During Phase 1, if you are careful about hydrating, there should be no symptoms whatsoever besides an urgency and mild burning near the end. You may feel toxic mentally, but you are not technically a biohazard to others until you begin to pee (presuming that you have done a quick cleanup at the doctor's office).

What do people do during Phase 1? One lady reported to me that she drives to the bargain store and walks around browsing and shopping, then contiues home before the 2 hour mark. Others sit at their computers, watch TV, or whatever. If you are not active, it is best to move around - e.g. lie in a bed and switch from supine to prone and from side to side. Since I have an hour drive home and a friendly driver, I lie in the back - flipping position every 15 min while reading a magazine. At home I usually update the Current Status of the blog and go to bed, continuing to flip while watching TV and hydrating. Since a few bubbles are usually present from the instillation process, some movement is desirable so that the entire bladder lining is exposed to the BCG. If you feel like it, you could eat a meal during Phase 1, although I usually don't feel like it. I do ALWAYS eat a small meal during Phase 2. My protocol is the extreme, of course - consistent with my nature.

Phase 2 - The Special Handling Period - Now you are officially a biohazard and peeing toxic waste, and the next six hours are a matter of peeing and drinking and peeing some more. Since the recommendation is that the pee be sterilized by bleach for 20 minutes, it is best to tailor your fluid intake to ensure that you don't need to go more often than every 20 minutes. And in the early BCGs this was not always easy or even possible! As a BCG veteran I have the intake output cycle down to 20-40 minutes between. For men it is important to remember to assume a sitting position to pee. This position avoids splashing the BCG cooties around your bathroom. If you have any pain, cramping, or voiding issues, sitting up as straight as possible rather than bending forward will help. I have included a handy sign at right for those of you who prefer visual instructions. Side effects during Phase 2 can range from essentially nothing (last week and my first two ever), to mild burning and headaches, to fairly intense pain, cramps and burning and other things better described elsewhere. For pain and cramping my doctor says I can take up to 4 ibuprofen tablets (500mg each), which is four times the non-prescription dose. There appears to be no rhyme or reason to whether your Phase 2 will be easy or hard, although in general each successive one in a series will be increasingly worse.

A word about eating. Towards the end of Phase 2 and during ALL of Phase 3 you will have no appetite at all. If, like me, you have not eaten since the night before, your system will not have the energy it needs to recover from the BCG. So I ALWAYS eat during Phase 2. Why then as opposed to Phase 1? For me there are several reasons - firstly I do a careful cleaning of the affected area at the end of Phase 1, clean the toilet with bleach, and wash my hands thoroughly with soap and hot water - even though I used gloves. So I feel like this is the time I am the safest from a cleanliness standpoint. Second, I know I will have at least 30 minutes between times to pee, leaving plenty of time. And last, there lately has been a problem with my system getting stimulated by the BCG - so that I nearly always need to defecate within the first hour. I prefer to have all that behind me before eating - pun intended. As for what to eat, I found that anything heavy in protein (meat) or fat (cheese) tends to sit in my stomach like a brick, so I prefer a thin, vegetable soup with a piece of multigrain toast. And I enjoy it, because I know I will not be eating for a while!

Phase 3 - The Evening After - After my final pee at or after the six hour Phase 2, the first thing I do after pouring the bleach in and starting the 20 minute timer is clean the bathroom - toilet area and sink, and dispose of the trash in a plastic bag - including my sacrificial underwear for the day. Then I take a LONG hot shower. We are talking 30 minutes of scalding water. It is a waste and a luxury, but at this point it has been earned. While physically you don't need to really clean more than you have been doing, the shower provides a sort of mental cleansing, and much appreciated warmth - especially in winter. It is also important to maintain the hydration and urination to at least half a quart per hour until bedtime. Phase 3 is marked by a TOTAL loss of appetite, headache, body aches, and for me there is an effect I call brain-fog. Cognitive functions are turned off. Doing something simple like converting meters to inches requires 15 minutes of intense concentration, even if you cheat and use Google calculator! I typically prefer to be alone, not having to comprehend what anyone says to me. If I watch TV, I seek out the most mindless shows possible - sadly not difficult these days with so many choices. If my only pain is headache, I take 1000mg of acetaminophen (2 extra strength tablets). If I have any body aches or indistinct stiffness - and especially if there is any cramping in the kidney area, I take 1000mg of ibuprofen (2 regular tablets). After about 3-4 hours the brain fog will start to fade and Phase 3 will be near its end. How do you know when it is over? For me, I become suddenly hungry - starving mad hungry, after hours and hours where even the thought of food is nauseating. This generally occurs 5-6 hours after the end of Phase 2. I have to be careful again not to eat much. Because I am about to go to sleep, and also because the system is working to battle the BCG stimulation, any heavy meal will cause stomach cramps and indigestion within 2 hours. So I generally have a couple of pieces of toast (no butter) with some fruit preserves or honey. I would describe Phase 3 symptoms with the term "general malaise," which basically means it's indescribable. It is a sort of abstract thing where you feel tired and awful without any specific pain of much import. Since the term is an abstraction, I have chosen an abstract photo which seems to capture it.

Phase 4 - The Day After - After my first few BCGs I had only a vague brain fog the day after instillation. But now I have been having more of the famous "general malaise" and flu-like symptoms - exhaustion, cramping, aches, pains, stiffness, chills, headache, and so forth. This go round it was a mild episode, but after my 3rd treatment last September I stayed in bed pretty much all day. Again this is highly variable - and it's a good thing. It shows the BCG is working to fool the body into marshaling all its forces to fight a disease. In this case there is no bladder infection, but that is the target area, and the theory says that the fight to kill the imaginary infection serves to keep the cancer at bay in 50% of the cases where maintenance protocol is used. So don't be afraid to gulp ibuprofen, slam fluids, and rest for a day. Because at the end of Phase 4 you will feel almost as good as new, except for the minor discomfort from peeing that lasts for weeks. Even that minor discomfort is a blessing, serving to remind that the medicine is doing the trick!

Since my side-effect list is benign, like last week I am including it below rather than hiding it in a backup page. Stay tuned for more stories from Biohazard Man!

4th BCG Maintenance Series #1 of 3 - March 12, 2010

Biohazard Man is back, and his amazing superpowers are as inconsistent as ever! I think my system was in better condition for this BCG than it ever has been in the past. And while I was prepared for some mild side-effects, I was not prepared for essentially nothing. That's right - pretty much nothing in the way of side effects! But don't worry, there is definitely BCG in the system, and I do feel it, but dealing with it (other than the sheer drudgery) was pretty easy. We arrived at the doctor's office just before my 10:15 AM appointment and were promptly showed to the exam room by Gloria, our favorite nurse's assistant. We were happy to hear that Gloria will soon begin an internship with the Salt Lake City police in their crime lab - a big step towards a career in CSI.

Urine was checked, room and equipment made ready, and BCG mixed to 1/3 of a dose by 10:30. The doc was in and out a few minutes later, and we were driving home by 10:45. I had decided to ramp down the massive hydration a bit, limiting myself to about a quart per hour. This plan seemed to work well, and the special handling period was able to begin right on time at 12:45. Continuing the moderate hydration pace, I was able to reduce the trips to the toilet and increase the volume each time - perhaps a good thing to exercise the abused bladder? I expected the normal side effects to kick in about 3 hours after that, but was pleasantly surprised. After 7PM the special handling period was over. One lesson I have to keep re-learning is that just because the biohazard time is over, that does not mean the hydration time is over. One uncomfy visit to the toilet later I was back on my one quart per hour through the evening.

One thing that I noticed in my BCG series last September, the famous "flu-like" side effects have begun to appear. Prior to last time I was exhausted the next day, and my brain was fuzzy - so work of any importance was not an option. But last time it was like a full blown flu. Body aches, head aches, chills, the whole lot. Gone within 18 hours. I decided this time to add these symptoms to my "pee by pee" diary. So while the urinary symptoms were very minor, the flu-like symptoms did appear in the form of a dizzying headache at 10PM last night. Two extra strength acetaminophen tablets dispatched most of it within half an hour. But by 11PM some minor body aches were starting. I just went to bed and slept OK, rising three times to urinate at midnight, 2AM, and 5:30. Got up this morning at 7:30 and was quite surprised to feel like I have a minor hangover. And I promise I did not touch a drop - haven't for days! Fortunately I have enough experience in such matters to simply ignore it. No further drugs or other treatments.

And if you were wondering, the biohazard pee is NOT REALLY pink. Nor should it be used for melting snow! But it does help recovery (for those of us who are properly equipped) to return to the standing position after the toxic handling period is completed!

Since the symptoms were so mild, I changed my practice of hiding them in a backup page (this time). No stomach churning details, and that is a good thing! Check it out in the grid below, after clicking to enlarge it to readability...


Judgment Day #6 - Good News Plus Double Bonus! - March 4, 2010

"It figures," were my thoughts yesterday as I noted the forecast for Thursday, March 4 was cold and rain continuing throughout the weekend. Mid 40s (7 C) with chill-inducing humidity plus some heavy winds. Dreary and unpleasant weather to be sure, and appropriate for a Judgment Day - my sixth since having the bladder cancer removed via surgery (a second time). While I have not consciously dwelt on this event for the past two weeks, uncertainty has eaten at my mood subconsciously, giving me a shorter fuse than usual and a shift in attitude evident to all. For some reason I was pretty confident last time, in early December, but not so much this time. I had some phantom pains around the bladder area (normal), and some real soreness in the past week (unusual). Sometimes knowledge is power, and sometimes knowledge (or perceived knowledge) just sucks. I suspect that knowing there were two more judgment days before reaching the critical two year mark was at play - if bad news is to come, now or next time (in June) would be the last chances for it to be automatically VERY BAD. Some cheating on the diet during vacations and weekends was other unwelcome knowledge to add to my sense of foreboding. Mentally I kicked myself for every supplement blown off or cookie sneaked. All to late now. Clinical odds of recurrence today are still at 50/50, so it's a toss of the dice in theory. The thing about clinical data is that they are based on averages. A single data point can be anywhere in the probability range. As a single data point, the 9 things I was adding could improve my odds - even if no peer-reviewed "proof" is close at hand. I could only hope and pray.

If you ever doubted it, let me assure you right here that God has a really good sense of humor. I slept in and took care of emails and comic reading, showered and glanced out the window at the expected gray skies. Slowly made my preparations and noted the location of the stored supplies for BCG, should I need them. Got into the vehicle as my wife drove us to the date with destiny at the end of a flexible medical cystoscope. The very first thing I needed as we set out was my brand new sunglasses, because the day was bright and sunny with blue skies and white, puffy clouds. Not the pure crystalline blue of a summer sky - more of a slate-blue winter sky - and very pretty and cheerful nonetheless. There were clouds on the mountaintops providing fresh snow for the skiers, and the rest of the scene was very pleasant. My mood improved minute by minute.

Traffic was sparse and speed enforcement was in evidence EVERYWHERE. No reason for it that we could see, other than the weather report and insatiable need for revenue in every governmental agency in this country (if not worldwide). People were being circumspect, as there were far more police fishing than fish caught that we observed. The trip to the doctor's office was uneventful, not impeded by traffic, construction, or weather. We arrived about 10 minutes early. Kathryn noted the absence of cars in the usually-full lot, hoping that it meant there was not a big backlog to delay my appointment at 11:30. After the usual signatures on paperwork, plus another new form to fill out in honor of the year 2010 - providing information they already had four or five times again. We were shown to the back right on time. There was one victim ahead of us in the scope room, so I finished out the new form while we waited in a nearby room.

I was happy to provide the usual urine sample, and we were quickly shown to the cystoscopy room. When instructed to disrobe in preparation, I was assured that I was indeed next - so I complied. Sure enough Dr. Hopkins popped into the room inside of 10 minutes, a new record! We had noted that no TV was hooked to the scope, because apparently his more senior partners had the priority on it. I was sorry to learn that, as the TV makes it MUCH easier to NOT concentrate on what's being done to you. Still the procedure was quick, and Dr. Hopkins announced "You're Good!" in less than sixty seconds. He prefers the optical scope over the video one, and he is lightning fast with it. Redemption from the impending judgment improved my outlook - like a snowstorm in a very hot place indeed.

While the great news was still sinking in, he announced BONUS #1 - a total surprise to us. "This makes almost two years for you."

"Just over 21 months!" I replied. "But who's counting?"

After sharing a laugh, he continued, "That's close enough in my book for two years, so I don't think you need to come back in three months. Let's make it six. Unless you prefer to come back sooner."

I assured him that I did not, and I was quite pleased to contemplate 5 months with no medical molestation of my private parts - after, of course, the three BCG treatments already scheduled to begin next Thursday. This happy news erases an inspection date in June that I was anticipating, and will now clears the spring and summer for all kinds of possibilities!

Dr. Hopkins ducked out of the room, and I had no sooner stood up from the table then he came back in, having forgotten to do a prostate DRE in conjunction with the PSA blood test he had ordered me to do. I was pretty confident that would be OK, as my PSA is a very low 0.8. The doc hates doing these as much as I hate getting them, so he was quick about it. That unpleasantness aside, we parted company until next week. I already mentioned Bonus #2 in the last post, but it is worth repeating here. A month ago I had my first colonoscopy, a requirement for turning 50 years of age. That inspection was so good that the surgeon said I did not need a repeat for TEN years instead of the normal 5.

I say all of that to communicate this: while there is still significant probability of recurrence in the next 8 years, the downside of it is not nearly so bad now that the "2 year" hurdle has been passed. I could even cautiously start using the term "remission" now, but it pays to be vigilant. While not statistically significant, all of these good results are at least heuristic evidence that the extra things I am doing to help the doctors fight cancer are working - either singly or collectively. Not only has there been no recurrence, but also my general level of health has improved. So I am well encouraged to continue! Having faith in God, avoiding chemicals and bottom-feeders in the food chain, focusing on fresh, natural, and organic foods and vegetables, and eating smaller portions of animal protein are the kingpins of the plan. Throw in some vitamins, supplements, and exercise (ugh) rounds it all out. Taking care of myself plus the grace of a loving God are bringing on the best results. I will bend anyone's ear about changing a lifestyle to change a life from end to end (pun intended). Refer to this post for details on 10 things I recommend to fight any type of cancer - and these are also good to prevent from getting cancer in the first place!

As for the promised rain? It is now here, accompanied by thunder, lightning, winds, and the whole Judgment Day panoply of special effects. And all of it makes me glad! Stay tuned to this space for details on the upcoming BCGs, a blow by blow (or pee by pee) accounting with charts and graphs as usual. In the meantime, I challenge you all to have an awesome summer, because I certainly plan to do so!