BCG Treatment #5 - July 31, 2008

The nurse was new to us and ready to roll right away. She informed me that last week's sample was clear of active infection, which is good news. The Doc was in a cheerful mood after his vacation. He had taken the family white water rafting down the Grand Canyon - a full camping/rafting experience. He recommended it highly - if you can handle the camping. He said he kept his promise and didn't think about me once. That's a good vacation in my book! He also mentioned that the infection was gone, which is not mandatory, but he prefers things that way. There were both red and white blood cells in the sample, consistent with expectations. Instillation went smoothly, and I told him how well PA Liz had performed and that I wanted her to be my backup. He was glad she had done well, and told me they rotate the PAs between the office and surgery week by week, so it wasn't realistic to have one designated. But I could ask for her specifically during scheduling. I suggested maybe I should schedule the post-cytoscopy BCG now, and he didn't comment. Instillation (described on the Instillation Page - 2/10 on the gross-out scale) went without too much incident.

On the way out, the scheduler asked if we needed a reminder for next week - my last of this session! I asked about scheduling BCG post-cytoscopy, and she didn't want to do it. They want to know the results of the scoping before future scheduling. Oh, well. So much for my attempt at forward-looking optimism! Returned home and did the hydration thing. Keep in mind that I don't drink any fluids after going to bed, so it's been around 12 hours and the system needs a good kick-start. So I have increased from my original schedule. I now do 16 ounces the first hour, 16 ounces the next half hour, and then 32 ounces the next half hour. This has made getting the BCG out after 2 hours much easier, and hasn't created any "holding problems." Then I continue with 32 ounces or more per hour for the next six hours, then cut to half of that for the balance of the evening. This schedule keeps me going most of the night at least hourly, but the volume has purged the BCG, blood, and clots very well. Keep in mind that the instructions say no fluids for 4 hours before, so I could get up early and have something to drink before 6 or 6:30AM. I don't bother with it, and I think it makes the Doc's job easier (bladder is good and empty) and the BCG solution doesn't get diluted much during the 2 hour holding period.

This week the side effects were more than even Week 3, so the BCG is certainly doing something. And this week there is a new, minor side effect! We can now add some small, solid "bits" to the blood and clots. The "bits" are about half the size of small grain rice, or smaller. Some are rust colored, some white, and some translucent - nothing too gross. The period of side effects lasted a lot longer than Week 3 or Week 4, but no extra discomfort. Details can be found in a table at the bottom of the Instillation Page. I was very sore the week after BCG #3, but that may have been due to the ancillary infection. We'll see how it goes tonight, tomorrow, and the next few days...

Four Down - Two to Go! - July 30, 2008

Tomorrow is BCG #5 of six. I hope last week's results established a trend - that side effects will diminish. I have felt absolutely great since last Thursday, much better than past 3 weeks. So I have much less trepidation about tomorrow. I am back with Dr. Hopkins, though PA Liz did a commendable job. The appointment is at 10 AM, the earliest yet, so maybe I can be finished with biohazard duty before 7 PM. Got a lot of work done in my 3 day week. So all is good to go for Treatment #5. Stay tuned for the details, coming tomorrow...

Explaining A Different Point of View - July 24, 2008

Most of you tuned in here to see if my side effects got worse today from BCG Treatment #4. I'm pleased to report that they did not. The super-hydration yesterday did the trick. My bladder felt last night as if it had run a marathon, and I suppose it actually had. A bit tender at bedtime, rising hourly to urinate (totally clear), and I was exhausted this morning. I mostly slept until noon, and now at 3:00 PM I feel great. Perhaps better even than the day before the treatment. So today I want to write about something completely different...

Those of you who know me have observed a pretty profound change in my attitude, which was always a problem for me since about age six. Just ask my parents! I don't know how many times I heard as a child, "You need to change your attitude." The biggest problem with my bad attitude was that I liked it and it liked me. So I learned to hide it. Though it would reappear at times, usually in the form of frothing rage - often with little or
no trigger. I used to keep it in check by channeling my energy into sports. But as age progressed, that became difficult to impossible. I even tried my hand as referee of kids' soccer, but my temperament was totally unsuited to that. So all I have at this age is motorcycling, which is a good mental exercise, but not ideal for venting. My posture and facial expressions had relaxed into hostile projections that sent negative messages to everybody - almost always unintentionally. I had a pretty successful career in aerospace finance for 20 years, and it bored me terribly. Frustrated continually by the bureaucracy, I jumped at the chance to fight it and switched to a process engineering job at the age of 44 - a complete and total career change. I took to it like the proverbial fish to water, but had less success than seemed reasonable.

One day last year the best boss in the world recognized a problem and sent me to something we at the company call "Charm School." It's official title is "Consultative Skills," but it has very little to do with consulting and very much to do with how to relate to other people without pissing them off (intentionally or otherwise). The boss called me in prior to assigning me to the class and explained that I was making her angry, and how, and possibly why. I was in total shock to hear it, and she explained that she intellectually understood that I didn't intend to send the offensive messages, but that emotionally she was still angry. And sick of it (and me). She asked me to mull it over, being slightly unsure about her diagnosis. Much to her surprise I accepted her premise within 10 minutes, because it pretty much explained something that had always been a mystery to me - why people reacted negatively to me for no apparent reason since about age 10. And so I went into the class with the idea that I indeed had a problem that needed to be fixed (unusual for the folks we generally send to the class). I paid attention and got a lot out of it. Still it was a full week of psychological purging and unpleasantness, taking me out of my comfort zone and keeping me there. It was very emotionally draining. And I did manage to offend the instructor - unintentionally, of course! Suffice it to say that I took most of it to heart, and now I'm one of few people certified by the instructor (who owns the material) to teach part of it (only at my company and within the strict confines of our contractual arrangements).

I changed my behaviors, posture, and countenance. People started reacting to me more positively, and my attitude improved as a result. I liked my process improvement (troubleshooter) job before, but now it has become a real joy and passion. Results improved and new assignments were even more challenging, bringing further success. Then in the midst of this grand renaissance came the diagnosis of bladder cancer. While it's treatable and not life-threatening (as this point), it's still a life changing experience.
A Christian lady I work with on occasion had not heard the news, and we spent some time discussing it and bringing her up to speed. I told her I view the cancer as a gift, and she was a bit shocked. She rightly explained that all disease was a result of mankind's sinful state, and not retribution for specific behavior. I agreed, but had some difficulty explaining my point of view. We finally reached a level of mutual understanding that was helpful for both of us.

Another fellow at work asked me why I was happy all the time. "Every day is a good day!" was my reply. It occurs to me that I should try to explain why that's the case. Then I came across a reference to an article titled, "Don't Waste Your Cancer," by Dr. John Piper, who was diagnosed with prostate cancer in 2006. It lists ten ways a Christian might waste cancer, and explains each point with Biblical references. Subsequently Dr. David Powlison (also diagnosed with prostate cancer in 2006) elaborated on each point. These two guys are theological heavyweights, so the full article will be a bit deep for those readers who are not so inclined. Still the ten main points will be interesting to even the most jaded, and they are presented below:

Don't Waste Your Cancer
1. You will waste your cancer if you do not believe it is designed for you by God.
2. You will waste your cancer if you believe it is a curse and not a gift.
3. You will waste your cancer if you seek comfort from your odds rather than from God.
4. You will waste your cancer if you refuse to think about death.
5. You will waste your cancer if you think that “beating” cancer means staying alive rather than cherishing Christ.
6. You will waste your cancer if you spend too much time reading about cancer and not enough time reading about God.
7. You will waste your cancer if you let it drive you into solitude instead of deepen your relationships with manifest affection.
8. You will waste your cancer if you grieve as those who have no hope.
9. You will waste your cancer if you treat sin as casually as before.
10. You will waste your cancer if you fail to use it as a means of witness to the truth and glory of Christ.
By John Piper. © Desiring God. Website:

Read the entire article by clicking on the link: Don't Waste Your Cancer

And just in case any of you think that all this means that I've lost my "edge," feel free to click on THIS PHOTO of P.A. Regan (with his brother) hard at work at his last job. Thanks Trevor!

BCG Round 4 - July 23, 2008

The instillation process (described on the Instillation Page - 2/10 on the gross-out scale) was the easiest to date. Substituting for Dr. Hopkins was P.A. Liz who did a commendable job with a minimum of awkwardness or discomfort for both of us. I talked to her a bit and was quickly able to establish that she was more careful and knowledgeable than the evil Regan. She had even read my chart in advance and was familiar with my case, knowing exactly what was due that day and what medications I was taking and why. Imagine that! She said she would send this week's urine sample to the lab to see if the ancillary infection had cleared up. After the instillation I asked how the Doctors were assigned PA assistance when they were absent, and she told me it was whoever was convenient, unless the patient specifically requested someone. So I asked the front desk to note in my chart to use Liz and not Regan. They said that I can ask for whomever when I call, but they would not so note the chart. So I will ask Dr. Hopkins next week if he can make that happen.

Last week the first side effect (discoloration = blood in urine) didn't appear until 3PM and clots at 5PM. This week there was some discoloration (but no visible blood) in at 3:30 PM and o
ne medium sized bright red clot at 4:50 and two more tiny ones at 6:15. Clearly I am overachieving on the hydration, and I suspect I will need to continue (at a lesser pace) tonight and tomorrow! So far, better than last week! Bathroom Diary details may be found on the instillation page.

Side effects can certainly continue for a 1-3 days after instillation day, so let's hope for the best that we're all done for this go-round...

Round 3 BCG - Post-Mortem - July 18-21, 2008

Treatment #3 progressed from "no big deal" to "some kind of deal" this week. All day Friday there was no comfortable position - sitting, lying, standing, walking, hunched over - all equally uncomfortable. Not pain, but burning in the bladder and major discomfort. No way even to take a nap. Reading, watching TV, or doing internet/work stuff was limited to 10 minute intervals - not at all efficient. I ended up shifting positions and/or peeing every 15 minutes throughout the day. The greater the urge, the greater the burning. Urinating brought relief to that, but traded it for a pretty severe bladder cramp lasting up to 20 minutes after. I was able to sleep that night, though, and it was back to discomfort on Saturday and vague discomfort on Sunday. Back at work today and tomorrow before Round #4 on Wednesday. Dr. Hopkins called me Friday and opined that blood clots were not what he'd classify as a normal response, but within the range of things to be expected. A lot of folks are concerned and asked me yesterday and today how it went. I tried to describe it, but it seems to be more upsetting than reporting all is well, which is what we are all hoping for. And since all is well enough now, I tried that as a response - rough for a day or two, but fine now! Even that made some wince in sympathy. If this week is worse, we'll move from discomfort to pain, and I have Lortabs (codeine plus acetominophen) left over from surgery to get me through Thursday. Putting the best spin on it that I can, let's just say I had a fair number of David Beckham moments (see photo) on last Friday, putting me in the best of company. Truth be told, there are plenty of other kinds of Beckham moments I'd rather be having!

BCG Round 3 - July 17, 2008

BCG Round 3 went pretty OK, very similar to last week on instillation day (see details on the BCG Instillation Page - 2/10 on the gross-out scale). Dr. Hopkins was cheerful and chatty. But apparently it was a mistake to have posted something relatively nice about our friend and P.A., Regan. When Dr. Hopkins came in, he asked if I had filled the prescription and taken any. Being an overachiever with regard to following instructions, I had indeed. It turns out that Regan had prescribed a sulfa-family antibiotic, which kills BCG. Dr. Hopkins told me to throw it away, and gave a substitute prescription for Macrobid nitrofurantoin, which we filled on the way home. And to top it off, the antibiotic Regan had prescribed, which I had taken this morning on an empty stomach, caused what could inadequately be described as an explosive episode of diarrhea - seriously, folks! (It was bad - after I made it to the bathroom and evacuated - a wall had to be cleaned, and clothing had to be trashed.) As an added bonus it came as a complete and total surprise. Of course all this happened 15 minutes before it was time to lose the BCG. I called upon my superhero powers to hold it all in during the episode and cleanup, and I was subsequently able to go through the biohazard routine without further incident. Despite my best efforts to be open minded about people, it's become abundantly clear that the good-looking Regan is a f@cking idiot!

I read on ADR's blog that he was very annoyed at having his driveway covered in fox poop last night on returning home, followed by a hearty rant
about tree-huggers and the like that was very entertaining and well worth a minute to read. We should all look to Britain to see the logical ends of the current, pervasive P.C. movement in this country. In the meantime, thank God I live in America where mostly all I have to worry about is my own poop!

New side effect this week during the 6 hour post-BCG purging process. I had a reddish-brown color which could be a harmless side effect of the
Macrobid, well documented in the paperwork they give you.
I was thinking that there's no way for me to tell whether there's some blood in the urine or whether the coloration is entirely due to the Macrobid, so I did a little research and found that this is the same antibiotic they gave me for post-surgical recovery, and I had no discoloration then. So it's certainly possible I have some general bleeding responsible for the new colors... Another new experience - nine small, bright red blood clots. My written instructions from the urology clinic direct me to call them if I have bright red blood or blood clots, so we'll do that in the morning. I think my super-hydration plan (24-32 ounces per hour), while keeping me busy "going," has worked well to flush the bladder and stave off any pain during urination. Details of the Bathroom Diary have been moved to the instillation page.

I called the Urology Clinic and reported my symptoms to a nurse. Dr. Hopkins himself called back an hour later. He indicated that inflammation does increase each week, and that while most don't have blood, it's within the range of things to be expected. Since it's clear this morning, he said to go ahead and proceed with #4 next week.

Clearly my liquid intake has increased each week. I was over-cautious on Week 1, and ended up "going" 6 times in the 6+ hours of special handling, some with good volume. Week 2 was up to 8 times, all with good volume, and Week 3 was 11 times, all with good volume. I think the flushing will work to my benefit as far as side effects, but time will tell. Next Thursday, thanks to a very annoying state holiday (earthy version THIS LINK, and VERY earthy version HERE), the urology clinic is closed. Dr. Hopkins is only working on Monday, and so P.A. Elizabeth will be handling things on Wednesday, a day early. That should be - interesting...

On a side note, here's a special public thanks to my friend TK who sent a very thoughtful gift, received today. It's a teleidoscope with a dragonfly on it to symbolize good luck, strength, and peace. This device is a good match for my quirky personality, throwing concrete images off kilter. The picture at left (click on it for a larger version) shows what flowers and leaves look like, and as you rotate it the image changes pattern like a kaleidoscope. I had a lot of fun looking at the computer screens and dogs with it! Thanks much!

Pre-BCG #3 Weirdness - July 16, 2008

I got a call this morning from the urology clinic. Nurse Janet (whom I have never met) advised me that my urine sample from last week tested positive, and so I needed to go fill a prescription of antibiotics immediately. I asked her, "Tested positive for what?" "For infection," came the reply. I asked if she knew I was doing BCG, and she said she did. I asked if that was supposed to cause a sort of infection, and she said this was something different. I asked if it was BCG poisoning, and her only concern was that I go and get the pills and take one immediately. She said I could ask Dr. Hopkins all my questions tomorrow. I have an appointment at 10:30 for BCG #3, so I certainly shall ask away. But if there's a better way to raise a patient's level of concern, I can't guess what it might be!

As for me, I feel pretty good, with some general light burning sensation in the bladder. Maybe what I supposed was a side effect is really a mysterious infection. I did a quick internet search on the antibiotic and found: Sulfamethoxazole and trimethoprim are both antibiotics that treat different types of infection caused by bacteria. The combination is used to treat ear infections, urinary tract infections, bronchitis, traveler's diarrhea, and Pneumocystis carinii pneumonia. So there's no reason to think this is a BCG infection. I just hope that this doesn't delay or impact the BCG treatments! Since Dr. Hopkins is in surgery every Wednesday, I found it amusing to see that my antibiotics were prescribed by my old pal Regan, Physician's Assistant and G.Q. model. So perhaps he is good for something, after all...

Kathryn spotted the following, buried in the Bladder Cancer Web Cafe BCG Page:
Though side effects vary with the individual, the great majority of people find BCG treatments tolerable with side effects being temporay, and some have no adverse reactions at all. Dysuria (pain or difficulty upon urination) and urinary frequency are expected as a consequence of the inflammatory response, and cystitis is the most frequent adverse reaction-occurring in up to 90% of cases.
So I guess I'm happy to be in the 90% majority now!

BCG Round 2 Post-Mortem - July 11-14, 2008

No real side effects to speak of. There was some general lethargy and brain fuzziness, plus some non-specific discomfort (almost but not quite a burning sensation in the bladder & lower abdomen). Urine is clear and free from blood and debris. The symptoms were identical to Round 1, but a bit stronger. I was able to do the work teleconference on Friday, and considered doing some other work from home. After contemplating a blank screen for an hour, I decided that any work I produced would need to be checked on Monday. So I grabbed some reading material and went to bed, alternating between snoozing and reading for the balance of Friday. I had something that was not quite a headache Friday-Sunday. It finally became a headache Sunday night and was easily handled with aspirin. If anything, the side effects are identical to an allergy episode. Most of Saturday and Sunday there was also a mini-flareup of gout in my left foot, so that may be an advance of the joint pain issues that had been forecast, or not. I don't feel too awful, and I'm hyper-sensitive to any weird feelings, so it's hard to divorce perception from reality. Suffice it to say that it's all no big deal, except for the lethargy and brain fuzz the first couple of days. And a random bladder spasm every once in a while.

Still felt foggy on Saturday, but was able to do some work on
church stuff that morning and felt very productive. I am the new chair of the Future Facility Committee, and I had to get a lot of background and research done and properly organized. (On a side note, anyone interested in giving a large, tax-deductible donation to our building fund should send me a note using the "Contact Me" button near the bottom of the column at left) The summer weather in Utah is gorgeous, and I really felt that getting out of the house would help things. So after lunch we took a long drive down East Canyon and Emigration Canyon into Salt Lake City. Stopped at the Buddhist temple for a snack and a beer - a friend from work had invited us to their annual Obon Festival. It was much warmer in the city than the mountains, so we did not stay too long. Ultimately retreated to an air-conditioned Italian restaurant for salad, pizza, and three bottles of wine. All in all a good day. You can read the review HERE.

Sunday was near normal, with perfect weather again. Went to
church, washed the bike (still filthy from the Taos adventure), and hosted an itinerant biker on his way from Minnesota to California to visit family. Back to work as usual on Monday, for another busy 3-day week before Round 3 on Thursday. The next two rounds are where we can expect to see more dramatic side effects, so stay tuned!

BCG #2, Vitamin Therapy, and Some Hope - July 9, 2008

BCG #2 went pretty swimmingly - less trauma than last week on instillation day (see details on the BCG Instillation Page - 2/10 on the gross-out scale). Dr. Hopkins double checked my condition, urine, and talked to me a bit before deciding to proceed with #2. He also approved the use of vitamins during BCG, and so I started Oncovite today at lunchtime, a special vitamin blend developed by Dr. Lamm that shows promising results after 10 months of use. I also found some encouraging news on Dr. Lamm's website that suggests BCG symptoms could well be less intense than those experienced by ADR in England.

What to expect with BCG: You should not expect to have any serious reaction- these are quite rare and can be avoided by reducing the dose of BCG. With the first and second of the 6 initial weekly BCG instillations most people have no symptoms other than the irritation associated with passing the catheter. Beginning with the second or third instillation you may have some mild burning and increased frequency of urination, and occasionally some bleeding occurs. These symptoms often increase with later treatments, but if they are bothersome the dose of BCG can be reduced. Burning and frequency generally last for 1 to 3 days and may be associated with malaise or mild "flu-like" symptoms typical of many vaccinations. Sometimes nausea may occur, along with low grade fever or a mild chilling sensation.

Nothing there about lots of blood, tissue, and "bits." Keep in mind, however, that Dr. Hopkins is not fully convinced about reducing the BCG dosages, so let's hope my symptoms continue to be mild!

The progress of BCG Day #2 was remarkably similar to the previous week. Resisting the urge seems to be a function of posture. Sitting & leaning forward - bad. Walking - very bad. Reclining on the back - much better.

Bathroom Diary details moved to the instillation page.

We'll see in the next day or two if there are other side effects...

Night Before BCG #2 - July 9, 2008

The week has been blissfully free from side effects in the toilet. Urine is clear as a bell. In addition there's been a slowly growing burning sensation in the bladder, and the effective capacity is diminished. The urge to pee has kicked in progressively sooner, and tonight I have been going about every half hour. If the catheterization is smooth (non-traumatic = no bleeding according to Doctor Hopkins), I predict there will be some side effects from BCG Treatment #2. Since last time was a breeze, I don't have nearly the same trepidation level. I half promised to do a telecon on Friday for work, so I'm thinking now I can deal with whatever may come. The designated bathroom is ready, and tomorrow we shall see what we shall see. I've been practicing grunts, groans, moans, and swear words just in case!

Learning From Another's Experience - July 5, 2008

The BCG Experience - compiled from a British guy's cancer blog. He lives in the historic county of Kent and remains anonymous, referring to himself as "A Dived Ref," which I'm guessing is an anagram of part or all of his real name. The county of Kent covers the southeast of the Isle of Britain and ranges from near London to the white chalk cliffs of Dover. ADR describes his location as "5 minutes from the country." It looks to be a nice place to grab a pint or two of "hydration" - see the photos. His blog is a different style than mine, often posting several times a day on a stream of consciousness level. I picked through his experiences to see what might be expected for me. He underwent two six-week BCG sessions, with a TURBT before and after each, which is slightly different from the American protocol. Still, it's working well for him. You can find his blog HERE.

He's had two sets of six BCG treatments, the first in Nov-Dec 2006 and the second in June-July 2007. His grading included Carcinoma in Situ (CIS), which apparently requires a more aggressive BCG treatment than mine. (Not sure about this, just interpolating between his experience and what my Doc said) He experienced similar but not identical side effects each time. As of this writing I have experienced NO side effects, so what we have is my interpretation of ADR's interpretation at this point. I'd be happy if it stays that way, but I imagine I'm in for my own set of lovely side effects coming soon...

ADR has some very encouraging words for the rest of us:
Anyone going through these - stick with it - it isn't pleasant but it is targeted directly where the cancer was or is and acts directly on it. The shocks to your system are manageable, you just mustn't think that you can carry on as normal straight afterwards - the best thing is to lie down and take it easy, drink plenty of liquids and take things steady.

If there was such a thing as a "good" cancer to get it may well be bladder cancer. It is treatable and generally (in men) you can tell pretty quickly whether you have got it. Most of the people going in with symptoms have the earlier presentation that can be surgically removed or can be treated. The response rates are good and so on. There are of course other issues but generally it is one that caught early can be treated and it appears you can have it recur for a long time and keep treating it.

It occurred to me that not all cancers are going to be like that. some of course are just cut out and that is it. Some are far more difficult to detect and by the time they are detected they may be advanced.

I was explaining that I felt I was very lucky to have bladder cancer and to be in a country where it is treatable. - A Dived Ref

My extraction from ADR's blog of the symptoms I might be looking forward to is placed on THIS BACKPAGE to protect our more sensitive readers. (It's about 5 out of 10 on the gross-out scale, or maybe a 7-8 if you are particularly good at visualizing from the verbal descriptions. Sorry - that's the fairest warning I can give for it!)

BCG Special Handling Requirements - July 4, 2008

The written instructions from the Urology Clinic and on the Bladder Cancer WebCafe Site were both pretty clear:
For maximum effect the solution should be instilled when the bladder is completely empty and remain in direct bladder contact for 2 hours.

Patients are recommended to limit fluid intake for 8-12 hours, and to have no
fluid intake for 4 hours before treatment is scheduled. Avoid direct skin contact during and after urinating as it may cause skin rash and irritation. You are advised to sit while urinating and to empty the bladder completely. Thorough cleansing of genital area and hands is advised.

The toilet must be neutralized of any live bacteria; this is done by pouring 2 cups of household bleach into the water and letting it stand for 15-20 minutes.

The bladder should be thoroughly flushed after BCG instillation by increasing fluid intake.

The documentation is pretty long on instructions and pretty short on practical matters. For instance, cleanse hands and genital area with what? Increase fluid intake from zero to what? Starting when?

Here's what I came up with to make the best of the situation:
Scheduled instillations in the midmorning to avoid rush hour going from and to the clinic (an hour's drive for us).

Scheduled on Thursdays to limit work loss to 2 days maximum. Also leaves Friday as a work day to contact the doctor if there are any unexpected problems.

Got a doctor's note to allow working from home on Thursday from zero to 8 hours as tolerated, and permission to work from home OR return to work on Friday from zero to 8 hours as tolerated.

Filled in the world's greatest boss on the scenarios. Best case: Work a bit from home (maybe) on instillation day, and perhaps up to a full day of work (probably from home) on Fridays. Worst case: no work at all on Thursdays or Fridays. Advise her that the range will vary between those on a weekly basis unpredictably, and get some assignments that can be worked easily from home.

Set up a designated biohazard bathroom near my bedroom and home office and outfitted it for dealing with BCG. See the What You Need For BCG Treatments list. This link has also been added to my "Useful Links" section at left.

Drink no fluids other than to rinse the mouth, brush teeth, etc. after 11PM on Wednesdays.

Arise, shower, dress in loose clothes (see LIST), and drive to Clinic.

Return home, flipping front to back and side to side every 15 minutes to distribute the BCG.

Begin sipping water immediately, total of 8 ounces the first hour. Add another 8 ounces in the next 30 minutes, another 8 the next 15 minutes, and as much as you can take the last 15 minutes.

Go to the designated bathroom; remove shorts, undies, and man pad; and don 2 rubber gloves. (This may be accompanied by squirming and dancing and humming if your urgency is very great. Ensure no video or web cameras are present.)

Open container of Wet Ones antibacterial and place in front of the toilet within reach.

Urinate from a sitting position to avoid splashing.

Don't assume you're finished right away - sit quietly and relax.

Grab an antibacterial wipe and come to a semi-standing position and sit again to see if more comes out. Be careful not to leak outside the toilet or emergency towels on floor.

Clean the genital area with the antibacterial wipe and discard. Ensure no dribbling is imminent.

DO NOT FLUSH. Put on underwear and man pad.

DO NOT FLUSH. Lift toilet seat and wipe anything that may have come into contact with the urine with another antibacterial wipe. Discard wipe and gloves.

Pour 2 cups of bleach into toilet, ensuring that you get some on the upper porcelain part where the pee flowed in.

Rinse bleach dispenser with clean water and set aside to drain.

Start kitchen timer for 20 minutes.

Put on shorts, come back in 20, and flush.
After some practice, all of this may be done in 5-7 minutes. At this point I presume that future episodes may involve burning, blood, blood clots, tissue, and a fair amount of cursing, all of which will tend to increase the time limits.

On a positive note, unless you are on a medication that precludes it, beer is a fine and valid fluid for hydration!

BCG Treatment #1 - July 3-4, 2008

Before we left home I tried to relax using the hypnosis deep breathing technique. It didn't help much - I was way out of practice, and I was full of trepidation. The long drive provided an additional opportunity to try 3-4 more times, each attempt having an increasingly good effect. Did one more in the waiting room, and another in the exam room. I also got two stress balls from work - these are foam balls to squeeze when under stress. And concentrating on squeezing them tends to take the instinctual squeezing away from the affected area! I was pretty serene when the doctor walked in, and the process (relaxed and squeezing the stress balls) was very easy. After the instillation process (2 out of 10 on the gross-out scale) at 11:00 AM, we got into the Honda Pilot and headed home. Due to construction the trip took just over an hour. I sipped maybe 6 ounces of flavored water during the first half hour, turning every 15 minutes to slosh the BCG around the bladder. This was enough to address my dry mouth, having had no fluids since 11 the night before. I consumed the balance of the 16 ounces in the second half hour, then moved into the bedroom to continue flipping positions every 15 minutes. Began sipping iced tea the next half hour, then downed another 28 ounces during the last half hour. This gentle schedule was meant to avoid supreme urgency to pee from overfilling the bladder. At 1:00 PM the first episode started easy and ended painfully - not a lot of the fluid had hit the bladder yet. Sat a while and managed one final bit of voiding. Did all the special handling and hit the hydration trail. Drank 32 ounces of tea and had lunch in the next two hours. Check out BCG under "Post Labels" about halfway down the column at left for more information on how my BCG treatments are progressing.

Bathroom Diary details of both the instillation process and specific details on my progressive side effects for Initial BCG rounds 1-6 moved to the instillation page.

As of 3PM on Friday, Day 2, all normal. I could certainly have gone to work today without incident, but for being a national holiday! Happy Independence Day to all!!!

Respect My Superpowers! - July 3, 2008

Faster than a speeding ballet! More powerful than a loco-pollo!! Able to mount tall toilets at a single bound!!! Look in the sky! It's a bird! It's a plane!! It's BIOHAZARD MAN!!!!

Yes, it's
BIOHAZARD MAN, strange visitor from another planet who came to Earth with powers and abilities far beyond those of mortal men. BIOHAZARD MAN, who can raise the pollution of mighty rivers, bend plastic in his bare hands; and who, disguised as Steve Kelley, mild-mannered process engineer for a great aerospace conglomerate, fights a never ending battle for truth, justice, and the American way. Don't mess with BIOHAZARD MAN - he neutralizes his enemies a mile or more away with a burst of toxic pee from his mutant bladder, consigning them to a slow and painful death. Given enough iced tea BIOHAZARD MAN can pee a secure a perimeter or cordon an area for quarantine. No mortal being can dare to stand against BIOHAZARD MAN's unique bio-immunotherapy enhanced urine stream! Join with him as he continues the never-ending fight against evildoers while resisting the lure of the dark side! Yes, it's BIOHAZARD MAN, the greatest American hero!!! And YOU can help him in his daily battle to find his sworn arch enemy - Rubberglove Man - and bring that evil villain to justice!!!

Sure, it's silly. What's the point of having a dreaded disease and a comically toxic treatment if you can't have some fun with it? And while the picture above certainly lines up with the fantasy, the reality is somewhat more gritty. One thing to never forget, and always remember - don't EVER stand between
BIOHAZARD MAN and the nearest toilet! This second picture to the right is more representative of our real-life superhero - the man - the legend...uh, the chunky guy in a cape that's REALLY gotta pee!!!!

As it turns out, there is already a comic book character called Biohazard, pictured below, but BIOHAZARD MAN was up for grabs... Thanks to my brother GiantFoamFinger Man for his inspiration and dedication to all things superhero!

Officially Toxic - July 3, 2008

About 75 minutes ago I had my first instillation of BCG Bio-Immunotherapy. The instillation procedure (2 out of 10 on the gross-out scale) was painless and lasted less than 2 minutes. I asked Dr. Hopkins if the idea was to melt/replace the entire bladder lining or something less than that. He said there are receptors on the cancer cells that the BCG will bind with, triggering an immune response. My sister-in-law (Nicole) described it as a biological cruise missile, which seems a good metaphor. I asked if that meant that guys who discharged a lot of tissue had more cancer, and the Doc opined that more likely they'd had a stronger immune system response. Despite this and the article from Dr. Lamm (see sidebar on THIS PAGE) that I left him to read, he likes to use the full dosage of BCG each time. I told him he was the Doc and it's his call, and to his credit he took the article to read, recognizing Dr. Lamm's reputation.

There has been a tingly burning at the tip of things, possibly from the iodine disinfectant. On the ride home I lay in the back seat, turning side to sid
e and front to back every 15 minutes or so. In 45 minutes from now, I get to void this BCG, which is an active strain of tuberculosis bacteria, and for the next six hours after that my urine is a class 2 biohazard requiring special handling. More on that later.

In other news Dr. Hopkins informed us that the BCG vaccine now costs him more than he is allowed to bill the insurance, creating a problem. In future he may have to give me a prescription to fill and bring the stuff with me. The difference is about $5, but it can add up in a practice like his where they may do over 100 treatments a week. He also said I could start taking fluids immediately, and that it would not dilute the solution too much. Since I've had no food or fluids for 12 hours, this was good news. I have been ultra-cautious, though, not wanting to overfill the bladder so that I can't hold the BCG for the full 2 hours, and have had only 16 ounces of water until now. No real discomfort at all, but it all feels strange. Possibly mostly a mental thing. The first week is purportedly the easiest, so I shall not rest on my laurels for next time. 35 minutes before pee-minus-zero. Stay tuned for more details later today!

Mini Medical Update - June 20 - July 2, 2008

As I reported earlier, June was free from cancer medical treatments. But I did have to get my first root canal, and though I reported it to be 98%, the situation declined. I had been given penicillin to take, but forgot it on my trip to Virginia. Just before the Taos trip, I decided to take the rest of it, as the tooth pain had increased and the little sore, now surely a draining fistula, was much worse. I am also taking allopurinol for gout and the fiber-rich Modified Citrus Pectin (MCP) to trap any free cancer cells to keep them from grouping and taking root. The MCP says it could interfere with drugs and should be taken at least 2 hours apart from drugs and an hour away from eating. The penicillin was also best on an empty stomach. I followed the schedule religiously and found no improvement at all. After a few days, I phoned the dentist, who renewed my prescription. I was able to get it filled in Taos and covered by insurance. Cost me 97 cents. After another day of no progress, I discontinued the MCP - just in case. The results were dramatic. Huge improvement the next day, and incremental improvements thereafter. I took the last of the penicillin on July 1, and visited the dentist for a cleaning and checkup on July 2. He pronounced me healed and good to go.

This is very interesting. The MCP is supposed to chelate (envelop) free cancer cells and other abnormal cells, preventing them from doing much until they are eliminated by natural processes. The fact that it was able to chelate the much smaller penicillin molecule is amazing, and testimony to the efficacy of the MCP. It will not kill or cure cancer, but the claims that it could prevent its spread appear to be borne out by my experience. Amazing! Data on MCP can be found in the "Useful Links" section of the column at the left.

In other news, the BCG treatments begin at 10:45 AM tomorrow. I have read up on them and will post what might be expected based on another's experience. But there's no guarantee that my results will be similar, even though he is the same age and has the same staging. Side effects range from not much at all to being flat on your back for an entire week after each treatment. I'm hoping for the best, but truth be told, I am far from being mentally prepared. Will spend the morning doing breathing exercises, and I acquired two sets of stress balls to squeeze during the procedure. My wife will drive me there and back, and she wants to witness the process - from a distance. I feel great today, but tomorrow that all ends. Even though BCG is the best of all possible paths, going through it won't be fun. Sure, it's not as bad as radiation or chemo, but that doesn't make it fun. I hope my attitude will improve and calm will kick in after a night's sleep and some deep breathing exercises.

Stay tuned for what might be expected, and some early updates. Hopefully tomorrow!

Motorcycle Vacation - June 21-29, 2008

We packed and hopped on the ST1300 after breakfast on Saturday, June 21. We were on vacation pace, and hit the road late-ish, about 9:45 AM. Our destination was Avon, Colorado, near Vail, to stay with a stranger we had never met via the Motorcycle Travel Network. This organization allows bikers to stay with other bikers when traveling, making for a more pleasant experience and saving lots of hotel dollars. We had stayed at a place in New Plymouth, Idaho last year, and it worked out well for us. This year we have hosted 5 bikers (four singles and one couple), each for a night or two, since the end of May. All very pleasant and trouble free. I had previously contacted our host and received detailed directions to his place and an updated phone number. All looked to be good, as this was a very expensive area to stay.

After an hour of freeway we turned off and headed towards Wolf Creek Pass, an awesome motorcycle road. There was a marathon going on, and while the runners posed no issue, the several hundred vehicles painted with supportive messages and full of supportive people made for some random and hazardous traffic. We safely made our way clear and had a great time over the pass and on through Duchesne , Vernal, Rangely, and Rifle to get onto Interstate 70. The area through Glenwood Canyon and on to Avon has to be one of the most scenic and exciting stretches of Interstate in the country. We arrived at the house, following the concise directions, at about 5PM and found nobody home. Since I had forecasted our arrival time to be at 6, I was not too worried, even though I had called the supplied cell number several times that day - only to get a "mailbox full" message.

The neighbors in the small cul-de-sac all noted and acknowledged us. One even offered some ice water. They said the folks had been in that morning. The next door neighbor was reading a novel in a hammock in her back yard, and she told us the couple often worked late - even as late as 10PM. But if they were expecting us, perhaps they had left a door open and a note. After an hour I tried the garage door (locked) and the back door (unlocked). Other than a very friendly calico cat, there was no note for us inside. Nor was there any sign of a guest room. There were three cots located in three different rooms around the house, all covered by laundry, and all rooms filled with "storage" items. No effort had been made to receive guests. I taped a note to the garage door and we went into town and had an excellent dinner of filet mignon and a fine Albarino wine. By 8:30 I decided we should look for something else. The GPS was helpful, informing me that the Four Seasons and Ritz Carlton were very close. Also way over budget. We finally found a nice B&B Inn about 10 miles away in Minturn, Colorado. The manager took pity on us and rented us a very nice room for $110 tax included. Our erstwhile host finally called at 9:30. Upon being informed that we had given up and procured a hotel, his total comment was, "Well that's all right then." I subsequently reported him to the MTN organizers, and he has been permanently banned from the network. Serves him right, the bastard...

After an awesome breakfast of pancakes and bacon, we loaded up and headed south, passing through Leadville, Buena Vista, Salida, Canon City, Walsenburg, Ft. Garland, San Luis, Questa, and finally Taos. Approaching Walsenburg the weather was threatening, but we stayed dry. Lightning flashed around us on the mountains as we passed through Ft. Garland and San Luis. Just south of San Luis the radar detector started pinging, and I knew there was a cop using instant-on radar ahead. There were also some nasty crosswinds, best dealt with by a goose of throttle. Just after one such episode, the radar detector nearly exploded and we saw the deputy in the unmarked Dodge Charger Hemi turn around after us. Damn. I pulled over and waited, and he approached, staying well behind us out of eyesight. I craned my neck to see he was very nervous, with his hand on his holstered pistol. "What's up?" I asked, fully knowing what was up. "Just a minute and I'll tell you." I noted that he could not see my right hand, so I raised it for him to see it was empty. "You were speeding, 78 in a 65. Let me see your license and registration." Not wanting to make him more nervous, I explained in detail where the documents in question were located (license in my pocket and bike docs in the left saddlebag). I suggested that to comply, my wife would have to get off the bike, and then I would also, and I asked if it was OK to proceed along those lines. He allowed her to get off, and directed her to stand well away from the bike on the far side, keeping the bike between him and her. He then indicated that I could get off. I slowly removed gloves and helmet, making sure he had full view of my thinning, gray hair. I then described in detail where my license was, the asked for permission to proceed. We went on like this for 15 minutes while he verified that my license, registration, inspection, and insurance were all correct and current. Never moving his right hand more than an inch from his pistol, he took my docs back to the patrol car to write the ticket. I remained at the bike, both hands resting on the saddle in plain sight. After a minute of checking that my record was totally clean, he returned. "I never let anyone off for speeding on this road. But you showed a lot of concern for my personal safety, and I appreciate that. Have a nice day." He handed my docs back and left. No ticket - Score one for the good guys!

This lengthy and windy delay was sufficient to allow us to miss all the rain storms and make our way to Taos and stay dry. We stayed there Sunday-Friday nights and made contact with many of our biker friends at WeSTOC XIII. As helpers to the organizing team, we worked a lot more than we rode the bike, and it was all good. The Northern New Mexico food was also a big plus for us - I gained 8 pounds that week! A good time was had by all, and I was awarded the coveted STOC Silver Tongue award for escaping a ticket. It's proudly on display on my office door at work. We made our way home with our friend Darryl on his Gold Wing, and he spent a night with us before continuing on to visit his father in Oregon before arriving home to his lonely wife in Seattle! Darryl is pictured here riding along Interstate 70 near Vail, Colorado.