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It's a simple fact. 
I absolutely loathe and despise exercise. Mind you, I don't object to DOING something that may involve exercise. In school I was an avid player of both basketball and soccer (football in the UK), and I had few issues aside from asthmatic shortness of breath in performing adequately. In my mid 20s I decided that it was damaging my knees to continue in these sports, so I turned to racquetball for a while. 
Ultimately a lower back injury put an end to that. To my way of thinking none of those activities were "exercise," because they had a competitive end goal in view and my mind and spirit were completely engaged. The sports were simply recreation, and any aspect of exercise was incidental. While I'm probably as competitive as I ever was, the venues to explore that competitive spirit have become more mental than physical. Like most, I had my experience with health clubs, where they take money from your credit card or bank account monthly, and you go a few times, then become too busy or lazy to go, and too embarrassed to cancel until the expenses get out of hand.
About 15 years ago I changed employers. The new employer was located in California, in the heart of Silicon Valley. Unlike any place I had ever worked, they had a full-time health club on site, complete with locker rooms, showers, and TWO full-time health and fitness coaches, all provided free of charge to any employee. New job, new place, new schedule - so why not add a new exercise routine among the other changes? I jumped in with both feet. The consultant measured height, weight, blood pressure, heart rate (both resting and active), and body fat. Though it didn't show at the time, I was borderline obese. A blood test (for a nominal fee) confirmed that my cholesterol scores were all very high. The trainer set up a personalized exercise program for me consisting of 45 minutes of aerobic exercise three days a week to be interspersed with 40 minutes of crunches, weight machines, and free-weight workouts on the other two workdays.
I jumped into it with enthusiasm borrowed from the newness of the company, environment, and job challenges. I hit the health center five days per week, early in the morning, sweating over the machines and showering with the corporate executives (which was very weird). Over time I developed a routine, sipping Gatorade and jamming to loud music while pounding the machines and swinging the free weights. There was a lot of muscle soreness in the first few weeks, then... nothing. I did not lose any pounds. I did not lose any inches or reduce clothing sizes. All that I noticed was that the shortness of breath when climbing stairs or a hill was gone. No other benefits perceived. Blood work did not improve, either. Upon evaluation, I found that I had slowly developed a way to "cheat" the machines - resting a lot of my weight on my arms when working the legs and vice versa. Plus drinking the Gatorade, which is basically salty sugar water, was probably adding nearly as many calories as were being burned. And, most importantly, my waning enthusiasm revealed this absolute truth - I HATED EVERY SINGLE MISERABLE MINUTE OF IT! So I quit after about 8 months, and I never looked back.
Subsequently I tried a number of diets, all of which worked as long as you were faithful, and all of which were not sustainable - the American norm. About five years ago we found one that might have been workable long term, but six weeks in Hawaii was enough to derail it forever. Now, of course, the diet is a non-issue. We've implemented a complete and total lifestyle change that would have been inconceivable before. Nothing like an imminent threat of death to improve motivation. If God wants to get YOUR attention, let's hope something less radical can work for you! And the diet has been quite successful. Pounds dropping fast, sizes decreasing, energy increasing, blood work the best it's been in years. Dr. Lamm said following the BCG regimen is the best hope to beat the disease, and beyond that diet was the next best thing. Check both of those boxes as being done. His last recommendation was to add exercise. I wrote at the time that this was bad news, and now you know why. Many of you have told me that I would just LOVE the exercise once a routine was established. I already know that this is not true. Some like the social aspect of going to the gym with someone, or even competing to exercise. Being a strong introvert, this is not going to work for me, as proved by multiple unused gym memberships. When it comes to exercise, I want to be alone.
So a lot of you exercise, alone or socially, and YOU love it. Please don't assume everybody else will be the same. Apparently during times of stress, such as extreme exercise, natural substances called endorphins are released into the body. Endorphins can cause feelings of nausea, and they also can bring a calming, or pain-killing effect. And they are best known for potentially causing the euphoric feeling called "runner's high" or "adrenaline rush." Any examination of scientific literature quickly reveals that these "positive" effects are highly variable between individuals. Sorry to tell all you skinny exercise-people this, but I DON'T GET IT. 
If anything, I get the opposite of it. And I suggest an eight month trial was plenty of time to give it a try. And don't think I haven't seen you out there, riding your mountain bikes, pounding your treadmills, jogging around the block in any kind of weather. You may be getting high on the inside, but your facial expressions and body contortions look pretty miserable to me! Check out our happily high marathoner on the right... Still, to each his or her own. Just quit telling me that I will love the exercise, because I already know that I will despise it.
Does that mean that I won't do it? Surprisingly to me, even the deadly disease motivator seems to have fallen short on this one. I put some exercise clothing in a gym bag and put it in my truck three weeks ago. My half baked plan was to go to the company's fitness center (scaled down here in Utah, but still quite nice, and free), and try some of the machines out, taking it easy. I recall from 15 years ago that the least-hated exercise routine (and I tried ALL the machines, free weights, aerobics, etc.) was the upright stationary bike. Since then recumbent stationary bikes have been invented. I tried one for a bit last year, and it seemed to hurt my lower back more than the upright ones. Elliptical exercisers are new, but seem risky on the lower back. Still, some experimentation must be done to see what could work. I'm thinking an exercise bike in the basement might be tolerable, to be alone and watch TV, read, etc. while trying to ignore the misery of exercise. But why buy before you try, especially if it's free? In the past few weeks the BCG experience left me a bit tired, and working 3-day weeks kept me pretty busy during the other days. Last week was my first full week back at work. 
I took it easy on Monday and Tuesday, and was quite exhausted by Tuesday night. The rest of the work week was much better, and still busy. So by 6PM (or later) all I wanted to do was go home, not go to work out. Next week is a partial week, and should be very quiet. America's Thanksgiving holiday is on Thursday, and most are taking one or more days off. There's plenty for me to do, but no reason that some experimental exercise could not be attempted.
I will never WANT to do it, so wish me luck that I will be able to start the routine and see it through. Getting the circulation up and oxygen intake increased will both be very helpful to fighting cancer recurrence, so it needs to be done. Even if it doesn't end up like the last photo at left, don't expect me to love it!!!
I'm pleased to report that BCG treatment #3 of 3 for my first maintenance series went much better than expected. 
Symptoms started later, were MUCH milder, and peaked sooner than the first two in the series. Since my symptoms from #2 (with a 50% BCG dose) were stronger than #1 (at full dose), Dr. Hopkins said we would drop to a 30% dose. He indicated he was reluctant to go any lower than that, and I concurred - barring new published evidence to indicate lower dosages than 1/3 are equally effective. He also recommended taking 800mg of ibuprofen when I got home, and again before bedtime, to counteract the severe cramping I experienced in the right, lower back and abdomen the last two times.
There was a bit of confusion with the staff on how to prepare the reduced dosage. Dr. Lamm had recommended separating the raw BCG (which comes freeze-dried) and then adding 50cc of water. Mask and gloves could be used, but not necessary. Dr. Hopkins was concerned about the dry BCG being an airborne hazard and inhalation risk, so he had them mix the entire dose. Last week they drew out 50% and replaced with water. This week a different technician was working, and she drew out 30% and added water to THAT part and loaded it into a syringe. Dr. Hopkins had some extra work to do. After emplacing the catheter he attached a large syringe (without plunger), and then emptied the smaller 50cc syringe of BCG into that, to let it gravity feed. He explained that he did not want to "push" the solution in, if the catheter was sitting somewhere uncomfortable. I was thankful, but the process was a bit messy and took longer.
Afterward he authorized another cystoscopy, and allowed us to schedule the BCG treatments as well. He had declined to do this last time, so it seems he is becoming more optimistic about the prognosis for success. So now we have scheduled Judgment Day #2 at 11AM on Thursday, January 22, to be followed by three more treatments on the subsequent Thursdays. The early scheduling allowed us to secure earlier appointment times, so any long BCG days will peak before 10PM - which was very inconvenient this time!
Symptoms were pretty mild in the urine output area, and while the cramping was present, it seems the ibuprofen and/or lower BCG dose took the edge off. 
Duration of all symptoms was similar to last week, but the reduced severity was a VERY welcome surprise. Taking it easy today, and fuzzy brain has not kicked in as of yet. Could still happen one or more times in the next 10 days or so. Details of the side effects may be found at the BCG Maintenance #1 BACKUP PAGE.
Bottom line on this first BCG maintenance series? I feel like I have peed an ocean full. I learned something, Dr. Hopkins (and staff) are learning something, and yesterday was not miserable - albeit not a walk in the park. God is indeed good, ALL of the time!
Today is the last of the BCG treatments for this round, then 12 weeks off. Last week's side effects were every bit as strong as BCG #6 of my initial round. I have only heuristic evidence to support my conjecture that my full dose two weeks ago got the bladder up and running, so the half dose last week had no reduced effect. And I suspect that even if we drop to 1/3 dose, which is the minimum for which effectiveness evidence is published, this week will be worse still. I do have hope that we will just stay at 1/3 dose in the future (unless new evidence is published), and so next time MIGHT be better all around. Even if not, I can "tolerate" it. I should have no complaints - my full series of BCG treatment symptoms taken together are not as bad as even ONE round of chemotherapy, and radiation is even worse! That's great perspective, and we should have tremendous respect for those who have gone through that misery. Even so, in the quiet morning before going in for another treatment, it does not mean the day will pass without some unpleasantness.
Last week's treatment packed another surprise. The right lower back sharp pain and cramping was much worse. Dr. Hopkins said it was to be expected. One of the tumors was near the right ureter, and inflammation of the tissue and scar tissues in that region can result in some discomfort. 
I suppose I'm relieved that it's not a sign of kidney stones. The situation is improved somewhat by standing to urinate, which is not permitted until at least 8 hours after instillation, due to BCG handling protocols.
In any case I was back to 85% by Friday night, and we celebrated by going out for a quiet dinner. Went back to work Monday and hit things hard - we have an unlimited backlog of things to do these days. Same again on Tuesday until 3PM, at which point my brain simply switched off. I could not read through anything of substance, and I could not write anything from scratch. After taking some care, I found that I could cut and paste text and numbers into a document to write about later. By 4:30 I figured the company was not getting their money's worth based on my productivity per hour, so I went home "early" and lay in a dark room for a couple of hours. Slept in on Wednesday morning, and felt very alert mentally for the work day. But I felt physically drained, much like one feels a day or two after recovering from a cold or influenza. All normal BCG reactions, and to be expected. I'd had these symptoms before the day of or the day after a treatment, but having them a full five days later was an annoying surprise. Had a fairly productive Wednesday at work, and felt pretty "normal" by that evening. I'm guessing that this round will be a bit more intense, and the symptoms may bite me throughout next week. Hopefully 10 days from now all will be well again for twelve more weeks!
I will probably wait until late in the day tomorrow before I post the details of this week's BCG experience. Thanks again for all your support!
In my last update I pointed out how it seemed Dr. Hopkins had missed the thrust of Dr. Lamm's response to his email. Differences boiled down to "AS TOLERATED" versus "UNTIL SIDE EFFECTS OCCUR." I also promised to email Dr. Lamm myself, and I expected him to reiterate his earlier guidance. I believe the email exchange and what transpired next may be of interest to most of you.
Please be advised that challenging your doctor is an exercise in delicacy. Doctors are trained to be confident, and their natural egos are given frequent boosts as they complete training and begin practice. It's important to be respectful and keep in mind that YOU have employed the Doctor as an expert in his or her field. It is a sad tribute to American culture that we so often hire experts and pay for their advice, then discard it whenever it does not suit our (often less-educated or experienced) preconceptions. In an earlier post I had suggested that both doctors could benefit from collaboration and so could both patient sets. The reaction I observed raised my awareness that THREE egos were involved in potential conflict - those of the two doctors, and MINE! Since mine is the only one I can influence, I started there. Trying to be objective and respectful, I prayed for guidance as I composed an email to Dr. Lamm. My primary goal was to summarize all relevant facts succinctly to minimize the time it would take for him to read, understand, and respond to the message. When I was finished, I waited a couple of hours and took a fresh look to reorganize and tighten it up. With I final prayer I sent the finished product, reproduced for you below:
e-Consultation Follow-Up Questions
Hello Dr. Lamm,
I completed an e-Consultation with you on September 1, 2008 (Labor Day) for T1G3 bladder cancer and your summary is attached. I shared it with my urologist (Dr. Scott Hopkins in Salt Lake City), and I asked him to contact you to reach a consensus on BGC maintenance therapy recommendations for my case.
Dr. Hopkins' standard of care is to perform a cystoscopy followed (if clear) by 3 weeks of BCG maintenance at FULL STRENGTH every 6 months for three years, then discontinue.
Your recommendation for my case was distinctly different - increased frequency and duration with reduced dosage: 3 week maintenance BCG reducing the dose to 1/3 and giving up to 3 instillations at 3, 6, 12, 18 and 24 months, then yearly to 6 years, then at 8, 10 and 12 years
Dr. Hopkins shared your reply to his email inquiry with me, which states "...it is OK to continue full strength until side effects occur."
He now plans to give 3 week maintenance BCG sessions per your frequency above at FULL dosage AS TOLERATED, then reduce to half a dose. He defined inability to tolerate as unwillingness to undertake another treatment, or urgency/discomfort making it impossible to work 2 days after instillation. We proceeded with a full dose yesterday and another is planned for next Thursday, November 6. My symptoms were bright hematuria and clots lasting from 3 to 9 hours post-instillation followed by moderate abdominal cramps and general tiredness - no fever.
I think it will be helpful if you could clarify three specific areas:
1) Is there evidence to support that a reduced dosage is as effective as a full strength dose of BCG for maintenance, or any evidence to the contrary? This is the primary area of my concern.
2) What level of side effects would indicate a reduced dosage is in order? I can certainly tolerate much worse than yesterday as an alternative to radical surgery.
3) What are the mechanics of preparing/instilling a reduced BCG dosage? I believe the clinic here has never used a reduced dose, and they may perceive some difficulty and/or risk to the staff regarding the mechanics.
If you determine that your level of involvement with my case exceeds the scope of the e-Consultation, I would be happy to provide an additional consulting fee.
Thank you for your time and consideration.
Steve Kelley
I copied my email address and added home and cell phone numbers after my name. The message was sent Friday around 1PM, and Dr. Lamm sent me the response below at 3:40PM on Sunday.
Dear Mr. Kelley,
I will respond IN CAPS in the body of your email so I don't miss anything.
Unfortunately, I am prohibited from doing any more electronic consults by my insurance carrier, so I apologize for not being able to continue to consult by email on your case.
This does no apply to face to face consultation.
Best regards,
Don Lamm, MD
> 1) Is there evidence to support that a reduced dosage is as effective as a
> full strength dose of BCG for maintenance, or any evidence to the
> contrary? This is the primary area of my concern. ABSOLUTELY,
RANDOMIZED CONTROLLED TRIALS CONFIRM EQUAL EFFICACY (Ith INTERFERON SUPERIOR EFFICACY) AND REDUCED SIDE EFFECTS
>
> 2) What level of side effects would indicate a reduced dosage is in
order? PERSONALLY, WITH YOUR SIDE EFFECTS I WOULD REDUCE THE DOSE TO 1/10TH. REDUCTION TO HALF IS INSUFFICIENT IN MY OPINION.
>
> 3) What are the mechanics of preparing/instilling a reduced BCG dosage?
ONE THIRD, ONE TENTH OR ONE WHATEVER OF THE FULL STRENGTH PREPARATION IS PLACED IN AN APPROPRIATE VOLUME TO YIELD 50 ML OF THE BLADDER INSTILLATE. MASK AND GLOVES CAN BE WORN, BUT IT IS NOT REALLY NECESSARY.
I was dismayed to see that Dr. Lamm had to discontinue his e-Consultations, as I found his advice to be very helpful. It was very generous of him to answer my questions. I checked his website and found this short note, "e-Consultation Services are no longer available." Bad news indeed for those who don't have the time or funds to travel to Phoenix to see him. As I read his email, it seemed to boil down to -
1) Evidence supports that reduced dosages are equally effective (and more effective than adding interferon, which I was not contemplating)
2) One-tenth dose for my side effects - a pronouncement that surprised both Kathryn and me.
3) Just mix it up - no big deal
I trimmed Dr. Lamm's email down to just the facts and sent the following summary to Dr. Hopkins on Sunday evening:
Dr. Hopkins,
I was concerned that there may not be a meeting of the minds between you and Dr. Lamm regarding reduced dosage BCG therapy. I believe your plan is to continue full dosage as TOLERATED, and Lamm's email to you stated "...it is OK to continue full strength until SIDE EFFECTS OCCUR."
In order to save time and ensure clarity, I asked Dr. Lamm to respond to three specific questions. He was kind enough to answer despite advice from his insurer. His response is copied below for your consideration. My only motivation is to engage in treatment that will best prevent cancer recurrence and progression in my case, not to interfere with your diagnostic and therapeutic judgment.
> From: Donald L Lamm, MD
> Date: 11/2/2008 3:41:24 PM
> Subject: Re: e-Consultation Follow-Up Questions
>
> Dear Mr. Kelley,
> I will respond IN CAPS in the body of your email so I don't miss anything. Unfortunately, I am prohibited from doing any more electronic consults by my insurance carrier, so I apologize for not being able to continue to consult by email on your case. This does not apply to face to face consultation.
> Best regards,
> Don Lamm, MD
>
> > 1) Is there evidence to support that a reduced dosage is as effective as a
> > full strength dose of BCG for maintenance, or any evidence to the
> > contrary? This is the primary area of my concern. ABSOLUTELY, RANDOMIZED CONTROLLED TRIALS CONFIRM EQUAL EFFICACY (ITH INTERFERON SUPERIOR EFFICACY) AND REDUCED SIDE EFFECTS
> >
> > 2) What level of side effects would indicate a reduced dosage is in
> order? PERSONALLY, WITH YOUR SIDE EFFECTS I WOULD REDUCE THE DOSE TO 1/10TH. REDUCTION TO HALF IS INSUFFICIENT IN MY OPINION.
> >
> > 3) What are the mechanics of preparing/instilling a reduced BCG dosage?
> ONE THIRD, ONE TENTH OR ONE WHATEVER OF THE FULL STRENGTH PREPARATION IS PLACED IN AN APPROPRIATE VOLUME TO YIELD 50 ML OF THE BLADDER INSTILLATE. MASK AND GLOVES CAN BE WORN, BUT IT IS NOT REALLY NECESSARY.
> >
> > Steve Kelley
Dr. Hopkins responded to me at 3PM on Monday...
Thank you. We will discuss how you want to proceed (dosage) when I see you
this week. See you in the next couple of days.
Scott A. Hopkins M.D.
This polite reply left a lot of room to wonder how Dr. Hopkins really felt about my "interference." I modeled a number of scenarios in my mind over the next few days, none of which was helpful. So today after prayer, devotions, and shower, I did the deep breathing exercises during the hour-long trip to the doc's office.
We were shown into the waiting room about 15 minutes late, and the nurse asked for the normal urine sample and gave me the normal instructions. "Did the doctor say anything about the dosage?" I asked. "Oh, are you the one that had the real bad reaction?" she asked in return. "No. He sent me an email saying we would discuss it based on another doctor's information," was my reply. She assured me she would check with Dr. Hopkins before preparing any BCG. About 10 minutes later he came in and sat down. I opened with an apology for being so much trouble, which he dismissed with a wave of the hand. We had about a five minute candid conversation. He felt that the published information supported that reduced dosages of one-half or one-third were equally effective, but had no idea where Dr. Lamm's one-tenth dosage came from. 
He also admitted there was no compelling reason to go with a full dose beyond "habit" and his patients being able to tolerate it. I reminded him of the increased frequency and duration that Lamm had recommended being a bigger factor for long-term toleration. He told me that he used to follow a two-year maintenance BCG protocol based partly on Lamm's research, and that he had recently switched to three years based on more recent research, also by Lamm. So he felt the increased schedule (out to 12 years) at my age would indeed support a reduce dosage. I suggested a compromise that we finish out the current series at full dosage, and then go to reduced dosages for the next series. He thought for a second and replied, "Tolerability and going through all three is the most important thing. What were your side effects?" I told him him (since I had excluded that part from the email I sent him), and he immediately said, "Let's go with half a dose this time, and based on how you react, we can re-evaluate next week." I liked that plan, so that's how we proceeded today.
In fairness to Dr. Lamm two things should be noted. First, his current therapeutic regimen is to perform BCG maintenance with dosages that stop just short of producing any side effects. He has gone as low as 1/60th dose that I know of. Second, he has access to more current data from his practice and studies than has been published, and Dr. Hopkins would have no way of knowing about it. Since I am not Dr. Lamm's patient, nor have I signed up to be a subject in one of his studies, I think the compromise is a reasonable way to proceed.
Gloria came in a few minutes later with my reduced dose. I asked if she was going to make fun of me, having pointed out last week that "even little girls" could take the full dose. She laughed and denied that she would consider such a thing. Since the instillate is the same volume (50cc) with half the BCG, the instillation process was not any easier. Dr. Hopkins mentioned that he had me in a vulnerable position and asked whether I was supporting Utah or TCU in tonight's football game, pointing to his bright red Utah school tie. I laughed and told him that Kathryn and I both went to Baylor, so we had no love for TCU from our Southwest Conference days.
The side effects started one hour sooner, peaked faster, are somewhat more severe. They seem to be tapering off an hour sooner. Jury is out on how long they may last. I should probably have spent less time on blog updating and paid more attention to hydrating! Signing off for now, and to the left there's a drawing of Biohazard Man dashing off to his favorite room! As with ANY graphic on the blog, you can click on it for a larger version.
Details of the side effects are posted on this BCG Maintenance #1 BACKUP PAGE.
I absolutely loathe and despise exercise. Mind you, I don't object to DOING something that may involve exercise. In school I was an avid player of both basketball and soccer (football in the UK), and I had few issues aside from asthmatic shortness of breath in performing adequately. In my mid 20s I decided that it was damaging my knees to continue in these sports, so I turned to racquetball for a while. 
Ultimately a lower back injury put an end to that. To my way of thinking none of those activities were "exercise," because they had a competitive end goal in view and my mind and spirit were completely engaged. The sports were simply recreation, and any aspect of exercise was incidental. While I'm probably as competitive as I ever was, the venues to explore that competitive spirit have become more mental than physical. Like most, I had my experience with health clubs, where they take money from your credit card or bank account monthly, and you go a few times, then become too busy or lazy to go, and too embarrassed to cancel until the expenses get out of hand.
If anything, I get the opposite of it. And I suggest an eight month trial was plenty of time to give it a try. And don't think I haven't seen you out there, riding your mountain bikes, pounding your treadmills, jogging around the block in any kind of weather. You may be getting high on the inside, but your facial expressions and body contortions look pretty miserable to me! Check out our happily high marathoner on the right... Still, to each his or her own. Just quit telling me that I will love the exercise, because I already know that I will despise it.
I took it easy on Monday and Tuesday, and was quite exhausted by Tuesday night. The rest of the work week was much better, and still busy. So by 6PM (or later) all I wanted to do was go home, not go to work out. Next week is a partial week, and should be very quiet. America's Thanksgiving holiday is on Thursday, and most are taking one or more days off. There's plenty for me to do, but no reason that some experimental exercise could not be attempted.
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