BCG Rounds 2 & 3 and Other Updates - 5 November 2012

 It's been almost 3 weeks since my final BCG treatment of the last maintenance series, and I have been remiss in updating the blog with data and details.  I must emphasize that moderating my fluid intake and adding Gatorade as an electrolyte replacement has made an enormous difference in dealing with the side effects.  My "drink more, then drink more still" strategy definitely created more problems with electrolyte loss than it solved by flushing the bladder.  I target about 1.5 - 2 quarts of fluid (black tea at room temperature for me) per hour after the first two hours to continue until major symptoms cease - sometimes well after the 6 hour special handling period.  I intersperse mouthfuls of Gatorade beginning at about 3 hours after instillation, targeting about 2 quarts of Gatorade consumed across the time period.  I also sip a little more Gatorade during the night, and pound down at least half a quart upon arising the next day.   Net result is lower symptoms, lower duration, and less total discomfort.  I no longer need to plot a "misery index,"  as the net misery is now less than it has been for the past 2 years.

I found Round #2 to be about the same as last year, and, after making some adjustments in timing and amount of Gatorade, found Round #3 to be EASIER than last year.  Keep in mind that the reduced symptoms may be due to the short interval (5 days between #2 and #3), or due to my adjustments, or both.  In any case I am glad it's over and I am fully recovered just 2 weeks later - much sooner than ever before.  The detailed results are found in the charts below, not for the squeamish!  The corresponding tables from the previous round last year (and the year prior) may be found HERE.

BCG Round 2 of 3 - Click to Enlarge

BCG Round 3 of 3 - Click to Enlarge

During the final two treatments I was joking with Dr. Hopkins about skipping one.  Much to my surprise, he said that he was not fully convinced it was necessary to continue maintenance further.  I asked about high grade cases like mine, but he was not prepared to go into details.  Instead we scheduled an office visit in 6 months (April 2013) for him to review my case, updated PSA blood test, and the terrible DRE check of the prostate growth.  He has noted over the last 4 years that my prostate has been getting larger, but not too concerned because of low PSA.  I suppose at that time we will discuss the merits of continuing BCG maintenance.  Dr. Lamm is most insistent about doing maintenance BCG, but he proceeds at far smaller doses (down to 10% or 1% of a normal dose), while I have held steady at 33%.  Not sure where this will go, but I think I will proceed next October with another maintenance series, if for no better reason than my insurance will cover it, perhaps for the final time.  Dr. Hopkins also mentioned possibly doing only one or two rather than three doses.  Dr. Lamm demands 3 doses, although at the lower concentrations.  

I suppose we shall see on April 16.  Seems an appropriate day - after getting financially raped by the IRS on April 15, I will get physically molested by the doctor a day later.  It's amazing what we pay governments and doctors to do to us...

Click to Enlarge

BCG Maintenance Series 7 - First Round - 8 October 2012

It's been over a year since my last round of BCG - the longest gap to date.  I was happy for the time off and curious to see how my body would react.  Would my resistance be greater due to increased recovery time, or less (making symptoms worse) due to elapsed time allowing my body to drop BCG resistance?  There was good news and bad news here.  The bad news is that the symptoms were worse than Round 1 a year ago.  The good news is that my new protocol of adding electrolytes made the whole ordeal shorter and much easier to bear.

The appointment was at 8:30, and we were there early.  The doctor came in right on time (about 8:40), but the staff had not finished the urinalysis or BCG prep, so he went off somewhere and my BCG (1/3 dose) was not administered until about 9AM.  The doc was back from his trip hiking the Andes and Macchu Picchu.  He reported that the scenery was amazing, the vistas breathtaking, and no pictures could capture it.  During the day he handled the altitude well (more than 15,000 feet or approx 5,000 meters), but at night he was not able to sleep because of hypoxia and waking up gasping for breath.  Having spent nearly a week above 12,000 feet (4,000m) without sleep, he looked quite haggard and worse for the wear.  He worked slowly and methodically (quite unusual) and the administration procedure was easy and hassle-free.
 
On the way back home I hydrated slowly and was able to hold for the full two hour period.  Side effects began earlier and were more severe, but I felt generally better due to the addition of Gatorade sports drinks to supplement my normal hydration fluid - black tea at room temperature.  My wife was able to find Gatorade G2 with less than half the sugar - but still plenty of it.  (Avoid the new Gatorade Zero, sweetened with sucralose, which will give healthy people lots of gas). I sipped the G2 slowly throughout the day, and continued the next morning.  But being up every 60-90 minutes all night to urinate had significantly dehydrated me, so I would have been better off to pound a liter of the stuff first thing the next morning.  Lesson learned!  Next round will be on Thursday, only 6 days between #1 and #2.


While the urinary symptoms were worse than last year, the time duration and misery index was much less thanks to the Gatorade.  Last year I definitely over-hydrated and created severe electrolyte loss.  You can find last year's data in this post.  This year's round 1 table appears below.  Click to enlarge and view the details, unless you are squeamish - in which case you are done reading now!

Dealing with BCG - Lessons Learned - November 5, 2011

I promised this post over five weeks ago, so I am tardy.  It does point out the first lesson learned:

1) After you get the routine down and have both experienced and dealt with the maximum side effects (which does vary greatly from person to person), it is possible to completely forget that you just had a BCG maintenance series after about a week.

I could almost forget that I have bladder cancer, but it is a large, looming presence that is always in my mind, and possibly could come back to my body at any time.  Believe it or not, that's a GOOD thing, especially when wrestling with staying on a diet, remembering to take supplements, or even motivation to exercise.

While there is a progression of symptom intensity, there is an eventual decrease of the maintenance treatment frequency.  This combination of offsetting factors brings us to the next lesson:

2) At some point you reach peak side effects, and they do not get noticeably worse or better after that.

 So once you are "over the hump" in your BCG maintenance, it becomes a nuisance rather than an increasing horror.  This is also GOOD NEWS.  For some it is earlier than others.  I note that my urinary side effect timing, duration, and severity have been nearly identical last time and 12 months prior.  18 months prior was not so bad as those, and so forth going back.  While it is important not to extrapolate from a single data point, I really think the one year in between provides enough recovery time to offset the BCG intensity increase.  A side note, non-urinary symptoms (headache, body aches, malaise, etc.) are still highly variable, probably due to errors on my part.

3) Hydration is good, and a lot of hydration is better, but too much hydration can cause other problems!

One big difference between post TURBT (or biopsy) hydration, and post-BCG hydration is that the BCG for me causes a severe loss of appetite.  You need hydration after surgery to continually flush the area, which is a cut, burn, or abrasion inside the bladder.  This hydration combats the formation of scabs and keeps the area clean for recovery.  Do keep in mind that urine is sterile, unless you have some sort of infection.  For BCG, the hydration serves to flush the BCG out of the bladder (which happens pretty quickly) and also to keep the bladder clean and blood flow active, as the body now believes it has an infection and sends helpful natural defenses to deal with it.  Early self-experimentation showed that slacking off hydration made the urinary and non-urinary symptoms more severe and long lasting, so I made a commitment to always force fluids and try to super-hydrate.  After surgeries I almost always had soup of some type and whole grain toast, which provide ample electrolytes.  I do have soup for lunch before the BCG appetite loss begins, but late in the evening I am suffering from electrolyte depletion, not having any food or electrolytes since lunch and having washed through several gallons (yes, I said gallons) of hydration since.  After surgery you eat normally and therefore won't experience this problem. 
 
The bottom line is that the headaches, body aches, and general malaise actually INCREASED if I over-hydrated, making the day after BCG in some cases even worse than the BCG day.  Getting the right amount is vital.  Fortunately there is a wide range and it's easy to stay within it.  So how much is enough, and how much is too much?

3) For an adult male, one should target between one and two quarts  (or liters) per hour for the duration of the BCG handling period and at least two hours thereafter (10 hours total post-instillation). 

4) If you are close to the high end of that range, you need to take in electrolytes in the form of a sports drink. 

Do avoid electrolyte drinks that are high in Vitamin C, which travels quickly to the bladder and will add irritation to an already over-stimulated area.  I do have lemonade, but very light on the lemon, and mixed in with plenty of iced tea (room temperature tea, really) and plain water.  For electrolytes I selected Gatorade brand.  One problem with ALL sports drinks commonly found is they are loaded with sugar, which feeds cancer directly, so they should be avoided entirely after surgeries when hungry cancer cells may be floating about freely, looking for a place to take root and grow.  But for BCG, you are theoretically cancer free, and it's less of a risk.  Of all the commonly available sports drinks, only Gatorade uses sucrose (table sugar) rather than high fructose corn syrup, which metabolizes more slowly but actually feeds cancer more efficiently. Read details HERE. I found that pounding a quart of Gatorade every now and then produced a stomach ache, so I keep a couple of quarts on hand and sip them throughout the 10 hours.  One more the following morning also does wonders!

5) While one could easily handle BCG treatments solo, not enough can be said for the positive effects of a loved one or friend to help get you there and back, make sure the hydration and electrolyte supplies are near at hand, and generally be sympathetic.

Positive attitude is strongly correlated to improved health (Link HERE), and those blessed to have help through this bladder cancer ordeal are forever grateful.  Public thanks to my wife who has patiently filled in the gaps and fought the good fight along with me.

BCG Maintenance Series 6 - September 9, 16 & 30 2011

Just over three weeks ago I posted the successful results of my Judgment Day cystoscopy and praised the merits of modern technology - a High Definition monitor and a more flexible, smaller diameter probe.  In the three short conversations with Dr. Hopkins since then, I learned more about it.  While it certainly is High Def and more flexible, the doc claims it is exactly the same size (14 gauge French) as the other two he has used on me.  They have three scopes and the staff rotates them around on some basis unknown to him.  While he claimed (jokingly) that it was his excellent handling of the scope that produced zero symptoms afterwards instead of several hours pissing fire and 36 hours total recovery, it was probably a combination of several things:  My expectations that it was smaller, my relaxed state via deep breathing (which is normal), the presence of the High Def monitor to take my focus and concentration away from the area of discomfort, the increased flexibility of the Storz scope probe, and the wider High Def camera that allowed him to inspect the entire bladder lining and ureter openings more quickly with fewer passes.  While I would still like to take a micrometer to the three scopes and see for myself, they are not going to let me do it!  Truth be told, he prefers the oldest (and least flexible) scope with the optical viewer (no camera or monitor).  He says the ones with the monitors are upside down "The top of the screen is not the top of you."  I absolutely prefer the monitors as my all-consuming focus is on the screen rather than what is happening below my waistline!

Moving on to the treatments - as I mentioned in my last post, the non-invasive nature of the new scope enabled me to accelerate the BCG plan, but (as you can deduce from the dates in the post title) I had to skip a week between #2 and #3.  This was preferred to being filled of toxic bio-cooties the day before our 28th wedding anniversary!  And this is the first time I have had a full year off between BCG maintenance treatments.  The big question was whether the intensity would continue to build, as it had in the past.  The answer to this big question boils down to good news and bad news.  Good news - the treatments and recovery were slightly better than the last series.  While the urinary symptoms were nearly identical to the minute (see charts below if not squeamish), the day after was, in general, MUCH better than the last few times.  The bad news is that the day after symptoms of the past were, in part, the result of an error on my part - an error now hopefully corrected for the future!  My pursuit of hydration was (as is my style) so single-mindedly focused that I was exacerbating evening and day after symptoms with the additional misery of electrolyte depletion.  I shall publish a revised hydration/electrolyte plan in my next post.

Speaking of BCG, I have now completed the initial set (of 6) and six additional maintenance sets (of 3).  Checking my calendar, I have (if all goes well) six remaining maintenance sets (of 3).  So that makes me halfway through maintenance and 57% complete with BCG.  Of course the frequency spaces out, so the timeframe is just the opposite.  One set per year for three years, then one every second year for three final sets, making the last BCG around the end of September, 2020.  If all goes well and there is no recurrence, I will be 62 years old for my last set.  Maybe they will invent a pill or something before then!

So now for the BCG Report - Round 1 was scheduled for 10:30 or so, which (as expected) turned out to be 11:15AM.  Note, the special handling period and super hydration period is 8 hours, and the initial recovery is another 3-4 hours.  As it turned out, I did not get into bed for some sleep until after Midnight, so imagine what that would have been if I had accepted the schedule change to 3PM.  The doc was dressed in his casual Friday attire and in a very good mood.  Installation was completely uneventful, as was the trip home. The urinary symptoms, surprisingly, were almost to the minute exactly the same as the first round a year ago.  The post handling and recovery were much worse, and that gave me a "Eureka moment."  From the charts below (don't enlarge them if you are at all squeamish - 3 out of 10 on nausea scale), you can see that I had a one-time, very severe urinary symptom at about hour 9 last year.  At the time I attributed the occurrence to my failure to continue hydrating enough, ramping down to almost zero instead of something more gradual.  I compensated by massively hydrating and spent all night peeing instead of sleeping.  I resolved to learn my lesson and do better this time.  And so I did.  I kept my hydration at 2 quarts the first hour, 1 quart the second hour, and 1 quart per 30 minutes or so thereafter.  (1 quart = 947ml for those outside the USA).  Then I ramped down to 1 quart every 45 minutes after hour 8, and slowly stepping down afterward.  Two surprising things happened.  Despite my accelerated hydration, the SAME symptom appeared at essentially the same time, and I felt MUCH worse that night and the following day.  Very odd for round 1.  The next morning I felt so bad that I asked my wife to run to the corner store and buy me some Gatorade.  One hour after finishing a quart of Gatorade, I felt much better - moving from horrible to just blah.  This lasted for several hours, and I had no appetite at all until 3PM.  The only thing I had eaten the day before was a bowl of veggie lentil soup around Noon.  I deduced that my dedicated hydration had not only failed to improve the urinary symptoms, combined with the frequent urination it had also washed the electrolytes out of my system! I decided to add some Gatorade to my hydration plan the following week for Round 2.  See the detail charts below for Round 1 for this year and last year below.  Click to enlarge (3/10 on the squeamish scale).

Round 1 This Year

Round 1 Last Year

BCG Report for Round 2 - Scheduled for 8:30 (the earliest possible time) and happened at 8:50. Again the installation was routine. The doctor and most of the office staff were decked out in their University colors - Blue for Brigham Young University and Red for the University of Utah.  My doc was wearing his red booster shirt, and was rewarded the next day with a decisive victory in the big Utah football rivalry.  Urinary symptoms were again identical to the previous year, so all was good there.  I rotated in 1 quart of Gatorade every 3rd or 4th quart, but found it to sit in my stomach like a lead brick, so I had to slow it down a bit.  Still, all progressed normally, and you can see from the charts below (unless you are squeamish) that the symptoms were right in line.  Even better, the recovery time the next day was MUCH shorter! Click to enlarge (3.5 out of 10 on squeamish scale).

Round 2 Last Year

Round 2 This Year

Round 3 was more of the same - scheduled for 8:30 and administered at 8:55. I started sipping Gatorade right after lunch and continued throughout the day.  Symptoms were right in line with last year, perhaps a bit less.  If less, I imagine it was as much from the extra week off as from the Gatorade.  In any case the day after was less miserable, thanks mostly to the Gatorade.  I think I should probably add even more, as the near-colorless urine all through the evening and next day is indicative of electrolyte shortage.  More on this in an upcoming post!  See the data below (5 out of 10 on the squeamish scale).

Round 3 Last Year

Round 3 This Year

I presume most of you are more clever than I am, having beer or some other form of electrolyte input during your BCG days.  As always, let me know if you have any questions or concerns.  Comments welcome below.

Amazing BCG Story - June 4, 2011

Many of our regular "frat members" provide me updates from time to time that their cysto or CT scan was clear, and BCG is done, etc. But our latest frat member, Ben F from Louisiana, things have been interesting to say the least! Like many of you readers he did as much research as he could tolerate after he was first diagnosed, and even found my humble little blog here. He sent me a couple of notes thanking me for the tips and advice, and had a couple of questions that I answered as best I could. One thing he had done was to choose a skilled and experienced urologist in New Orleans, even though it was a long drive from his home. He went through two TURBT procedures and his diagnosis was confirmed as T1, high grade. Like me, he wants to keep his BCG dosage as high as possible for as long as he can tolerate it. So far, so normal and routine. But since his doctor was a 2.5 hour drive from home, he decided to find another urologist at the Ochsner Clinic in nearby Baton Rouge, Louisiana, only 30 minutes from his home. For those unfamiliar with Louisiana geography, New Orleans is near the mouth of the Mississippi River where it empties into the Gulf of Mexico. Baton Rouge, the state capitol, is about 100 miles upriver to the Northwest. Because of the omnipresence of water and swamps in the area, few roads go very far in straight lines, making circuitous routing a necessity. Bottom line was the closer location to home made a lot of logistical sense. Since BCG isn't new therapy or particularly difficult to administer, Ben made the move and scheduled his first BCG (of 6) to begin on April 12 of this year.

But when Ben showed up for the BCG, the obligatory urine sample revealed the presence of an infection, or so he was told. So he went back home with a week's worth of Cipro. Mentally this was a huge letdown, as Ben had prepared himself well by reading about my experiences and even doing similar overkill to set things up. So Ben amused himself in the week of delay by researching Cipro, only to find that it was not recommended and would probably interfere with BCG. He made a few calls to the new doctor's office to ask about it, only to be told they would do some research. No feedback at all. Finally the day before the next treatment he was able to insist on getting an answer, which unsurprisingly was that he was correct about the Cipro. The BCG would be delayed by ANOTHER week! To add to the insult, they also reported that his infection culture did not show any growth, meaning that he actually did NOT have an infection in the first place! I have commented in the past that doctors in the US are generally competent and professional, but their staff people are almost universally incompetent. Many have provided affirmation, but this story from Ben is over the top!

Ultimately Ben was able to have his first BCG in Baton Rouge on April 26, and it went routinely. For most of us (except HK in Toronto), the very first BCG is a non-event, and so is the second one. From #3 and forwards things start to get interesting. Ben reports that he had no side effects, and that my relaxation techniques were effective. He also had some stern words with the doctor and staff, telling them he would overlook the poor start, but he expected better care in the future. And that he would be watching and participating. All were in agreement. When he returned a week later, they again reported an "infection" as indicated by leukocytes in the urine sample. While presence of leukocytes indicates abnormality in the sample, it is perfectly normal for post TURBT and post-BCG samples. But the doctor misinterpreted it as infection and Ben was sent home. He visited twice a week for two weeks to get his second BCG, only to be sent home each time. Ben called his urologist in New Orleans and complained. On his next visit, the incompetent urologist in Baton Rouge told him, "I don't know what to do. You should go to New Orleans where they do know how to proceed."

Ben made the two and a half hour drive to New Orleans to get his second BCG instillation from his original doctor on May 13, over two weeks after the first. The good news is that it was also uneventful. The bad news is that the doctor decided not to count the first one in Baton Rouge, so he has to do 5 more. And now for the truly weird part. I asked Ben, "Since you have a 2.5 hour drive home, and you must begin biohazard handling after 2 hours, do you spend the night in New Orleans?" Absolutely not. Ben is truly the Mobile Biohazard Man. After two hours he and his wife pull over to the roadside and conduct Biohazard operations. Ben describes it in his own words:

"We have my SUV rigged like an ambulance...pretty funny to see. We get one of those urinals and big red biohazard bag from doctor's office, bottle of bleach, wipes, gloves, etc. Then when time comes, we just pull over. I will probably get arrested before its all over. Only thing that we need is one of those flashing yellow lights for roof mount."

Priceless. I told Ben that if he would send a picture, I would blog about it. And so here we have it. Ben F. from Louisiana and his mobile Biohazard Station!

Family Ties and Other Updates - January 29, 2011

We have a couple new additions to our Bladder Cancer "fraternity." Just over a week ago my parents called to let me know that my first cousin had undergone a TURBT surgery for bladder cancer the previous day. We were all concerned to hear the unwelcome news, and relieved to hear, preliminarily, that all had gone well. Of course my blog and contact information were provided by his mother, and he let me know that he has been reading miscellaneous ramblings here from the beginning. A quick glance at my blog post list tells me that will probably take him a while. Rick emailed me that, "All is looking good at this point with a lucky stage of T-0 and a non-aggressive pathology report." Our family history (no cancer whatsoever) is quite similar, as you would expect, and he was also taken by surprise. I do suspect that our diet and exercise patterns were also similar. One key difference: my cousin does have a 25 year history of pack-a-day plus cigarette smoking, which has now been discontinued. We look forward to catching up with each other on both the good and the bad in the future.

Ken from Kentucky went through 2 TURBTs and began BCG in late December. So we can wish Kentucky Ken a happy and cancer-free new year in 2011. Ken writes: "I'm a bit confused and overwhelmed at this point." I felt exactly the same way, and so does my cousin Rick. It really takes some time to come to grips with the news. Cancer will change your life. It is up to you whether that change will be a positive one.

I also heard from Brian in Atlanta, having just completed his initial six BCGs. His level of discomfort during the first two hours of holding period, and the burning thereafter, was much worse than mine. Perhaps he is more sensitive to the BCG, or more of his bladder tissue was affected by his TURBT. Brian writes: "I know what sleep deprivation feels like. After the 4th round, my wife timed me and I got up during the night every 7 minutes from 11:00PM until 5:00AM." He actually had to take two weeks between Round 5 and Round 6. He is up for his Judgment Day cystoscopy on March 2, the day before mine on March 3. And we can thank the "British Commonwealth Games" for providing Brian his "King of BCG" award graphic.

All of us appreciate your prayers and good thoughts as we go forward!

I am not a big believer in awareness campaigns or wearing ribbons. With the internet available to most, finding information has never been easier. And wearing ribbons can be supportive, I suppose. But the reality is that a kind word or a prayer would be more effective. I mention it because when I was harvesting the internet for some images to decorate today's blog post, I was amused to discover that the "awareness ribbon" for bladder cancer is the appropriate color. So take a look at the image below and don't be afraid to giggle out loud...

BCG Series 5 - Last of 3 Treatements - October 2, 2010

Good news all around - I did verify with my doctor that the next BCG interval has moved out to ONE YEAR. So we still have a CT scan and cystocopy in March, 2011, but no more BCG until after a second cystoscopy next September. This is wonderful news indeed! And even with my error in judgment on the first treatment of this series, the data for reaction to the BCG this time are well within the family of what could have been expected. My hydration protocol worked like a champ last week, and so was repeated this week. With the increase in reaction (as expected), I made sure to slow but not dramatically drop the hydration intake at the end of the special handling period. As a consequence I was again up during the night to urinate at 11PM, midnight, 2AM, 5AM, 6AM and 7AM, but these had a more "normal" character - no being awakened by pain and then peeing like a racehorse! Really there is no getting around the third series - it is meant to have an effect and it does Hydration regimen this time made the urinary symptoms less than the third treatment of Series 4 (last time). The flu-like symptoms seemed to be slightly less also - and this may be to my decision to stay in bed most of Day 2 (today - Saturday). In the past I had been resuming normal activities as soon as I felt better, and this activity may well have impacted the tiredness I experienced early in the workweek. We shall see, as I expect to take it easy tomorrow as well, before hitting the grind again on Monday.

The extra hydration and extra reaction added up to extra throughput and even more frequent dashes to the toilet. Several times during the afternoon I fell a few minutes short of making the full 20 minute intervals for sterilization! It was good to have my own private express lane here in the house with all the supplies at hand!

I should focus on the non-urinary side effects more, as they are only poorly described in my side effects tables. Starting about 5-6 hours after installation there is usually some cramping in the lower stomach or bladder area, and also around the right kidney in my lower back. Sometimes short in duration and severe, sometimes long in duration and mild, these cramps are always a wild card. Ibuprofen seems to alleviate the inflammation and swelling and dispose of the long duration ones quite well. Additionally there is pain and soreness around the "affected area" and often some generalized body aches and/or a headache. I find that acetaminophen addresses this type of pain more effectively. In the morning I try to gauge which flavor of discomfort is more pronounced, and then treat with the corresponding pills. For the general tiredness, exhaustion, and run-down feeling, all that will help is time and rest. For an introvert such as myself, time alone in a semi-dark room with TV or music to mildly distract me seems to work best. The other lesson learned is to rest, even when feeling dramatically better. This takes some discipline, especially when the weather is near-perfect as it usually is in Utah in September. Another thing I have to watch is my blog writing. My exhaustion and sometimes even "brain fog" renders me incapable of putting coherent thoughts together, and that effect may often be observed in these next-day postings. Fortunately my father reads these blog postings carefully and sends polite emails pointing out such errors, so they get fixed soon after posting!

For those interested in the details, the reaction table is below, about 4.5/10 on the nausea scale.

BCG Series 5 - Second of 3 Treatements - September 25, 2010

While this second treatment was a bit rougher than the second one three months ago, it was over and done faster than last week's. I pursued my own recommended regimen of relaxation, deep breathing, and careful mega-hydration. And I am a bit pleased to report that it worked quite well. Symptoms started earlier and were slightly more severe than last week, which was to be expected. But by 9:30PM I was pretty much fully recovered, and last night I got a decent night's sleep. Next week will be stronger still, but with renewed evidence that my regimen helps, I shall put it behind me quickly!

My Doctor, who normally (and quite unusually) gives the BCG treatments himself, was off houseboating in Lake Powell, resting and relaxing with family and friends. While good for him, it left me with 3 choices - defer the treatment until Monday and interfere with work (not wise in this economy), have the BCG administered by the incompetent nitwit PA Regan (a non-starter), or set aside decorum and discomfort and have PA Liz give the BCG. I went with option number three. Liz had given me a BCG in 2008, again when the doc was vacationing, and it was awkward but acceptable. So I did some extra deep breathing and went forward with my best attitude. After double-checking and then triple-checking the 1/3 dosage with the nursing staff, I assumed a supine position on an exam table. This time we had been shown to yet another new room in the labyrinth, and this one was noisier (from the street traffic), smaller, and a bit creepier than the others - being furnished with a surgical table and a surgical chair rather than the normal exam tables. More deep breaths were in order.

Liz came in with a professional demeanor and warm smile. Two years of extra practice had truly increased her confidence. She was quite careful, deliberate, and a bit slow - but every bit professional. She clearly did not recall having treated me before, and I chose not to remind her. While I missed the speed with which Dr. Hopkins normally works, Liz was an apt substitute. Given my lack of paid leave for illness, it is likely I will have to use her in the future for one out of three treatments, so I guess it's all good, if a bit awkward.

The symptom table shows more urinary drama than six months ago, but less headache, body ache, and duration, so all in all I was pleased with the outcome. And even more pleased to feel fine, if a bit tired, just a day later. Disclaimer, it's about 3.5/10 on the nausea scale if you click to enlarge the table below.

BCG Series 5 - First of 3 Treatements - September 19, 2010

Well if life is a pre-existing condition, then it probably follows logically that foolishness or stupidity is a pre-requisite. As you saw from the last post, Biohazard Man is back. And now belatedly I report on my first BCG treatment of Maintenance Series 5. I have had plenty of experience and over five months off, so I knew exactly what to do and what to expect. Or so one would believe. Unfortunately my data collection and experience increased my level of confidence. I simply knew this one would be easy-peasy, a cakewalk. And so it should have been.

Surely the trip to the doctor's office was normal. Beautiful weather, clear highways, no delays, and we arrived at 9:15 for my 9:30 appointment. We were in and ready to roll by 9:30, and Dr. Hopkins had no other patients to deal with. This was the first time we had done a visit on a Friday, and the place was very quiet. Ten minutes later the doctor came in and did the job. He and I were both a bit surprised that the catheter did not go in easily, and I can chalk that problem up to overconfidence mistake #1. The cystoscopy the week before had gone so well the I blew off the normal deep breathing exercises for the BCG, and it made things a bit more difficult. Not a big deal, but I made a note to add the breathing back in next time.

The BCG was instilled and we were back on the road home by 9:50. I was very thirsty, having forgotten how dehydrated one gets when abstaining from fluids, so I was careful not to hydrate too quickly. That worked OK, but during the second hour I forgot to double my intake as I normally do. This made the first urination much lower in volume than usual, but no discomfort. Even so, I should have taken the hint. I had my normal lunch of soup and toast, and then I sat at my desk and did emails and net surfing, drinking a good amount, but not really putting the effort into hydration. I declined to lie in the bed for this go-around, as the side effects were expected to be negligible. Checking the logs from six months ago, I was pleased to note the symptoms arrive right on schedule - mild as expected. Within 90 minutes they should be gone. So I continued sitting at the desk and sipping my iced tea. The symptoms, instead of clearing, became a bit worse. So I decided to move to the bed and hydrate more. Much to my surprise the symptoms stabilized, but did not decrease FOR 12 HOURS! Since there was no improvement I ramped up hydration in the evening, well after the special handling period.

This was too much and too late as it turns out. I finally went to bed exhausted at 11PM, and I was up every 60-90 minutes all night to pee like the proverbial racehorse. Rest and sleep? Forget about it! By early morning I was zombie-like, dehydrated, and sporting a headache. I spent most of Saturday resting and re-hydrating, all because I was too cocky to follow my own protocol. What was up with that? In a word - STUPIDITY!

The silver lining to this cloud is that the results do support the protocol of rest and super-hydration early in the process. But experimenting on oneself, especially unintentionally, is definitely not recommended.

The tables below show the results. The one on the left shows raw results (for readability), and the one on the right shows the evidence of under-hydration in red and outfall of over-hydration in blue. The side effects were more than the first round last time, and the squeamish may find the details to be about a 3 out of 10 on the gross-out scale, so one must click to enlarge the images below for those details. David F. in England tells me he made some similar errors in judgment during some of his BCG treatments, so I guess overconfidence breeds foolish behavior universally! I think we can all expect Biohazard Man to follow his protocol for the next two in this series...

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:

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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:

Click 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!