Exercise is a Crock of Poo - July 5, 2010

If you have read anything I have ever written about exercise, you will know that I never present it in a positive light. I am not opposed to DOING something like playing a sport. But just to exercise - on a machine, with weights, bicycle, or running is both physical and mental anguish for me. Furthermore, I never experience any of the purported benefits from this misery and drudgery. Those who feel exhilarated and energized after a fitness regimen - good for you! Feel free to bite me. I am just happy when I don't feel nausea on top of exhaustion. I have tried them all - "Fat burning" cardio, low intensity long duration, interval, and even high intensity interval. Not only do they all suck, but they don't appear to do me any good. Still I shall continue, because if being miserable for half an hour a day helps in any way to defeat cancer, I will do it. But don't be telling me how much better I will feel or how much weight I will lose. There are no data to support these fairy tales.

The latest data set comes from my international friendly competition with David F. in England. He was distressed at recent weight gain. I had never lost the 10 pounds I gained in Mexico, so I proposed a contest. He quickly agreed, and after a week it was off to the races. David's diet of rabbit food and stress (from working a start-up venture) combined with interval training has paid off for him in spades. I maintained my relatively low calorie diet, and added exercise 4-6 days per week. After 4 weeks David is reduced by 8 pounds. I lost zero, one, one, and then gained two - leaving me at net zero. The tale of the scale is illustrated by the graph below:



What can we make of all this? Hopefully nothing. Perhaps my "fat burning furnace" will ultimately kick in, and I can make some sort of showing. I have no idea. My friend Trevor convinced me of the merits of playing squash - the only racquet sport in which the length of volley increases with skill level. He even delivered a few weeks of informal training, and I must say I enjoyed it a lot. It is a game that involves the mind completely, as well as the body. I wore my heart rate monitor and had to ask for several breathers even in our fairly light workout. Experience will teach that not every shot can be won or every ball chased! For more stimulation, a quick internet search reveals this interesting tidbit - for a few brief months in 2001, one British professional squash player single-handedly changed the entire "look" of the game. Check out Vicky Botwright here.

I was nearly ready to take the plunge, and take some formal training in conjunction with a club membership, when a toe injury combined with a back injury to delay that plan for over a year. It may be that it is time to add this sport to the mix soon. I have to take a look at calendar, budgets and so forth. Might make more sense to delay until after the next cystoscopy to ensure everything is still all clear, and get 3 more BCGs done, before making a time and money commitment to squash. I shall have to think about it.

In the meantime one thing remains constant. Exercise SUCKS!

Life and Mental Health - May 30, 2010

If you visit this blog a few times, you can see that the day to day updates appear at the top of the column to the left, while research, medical details, and "deep thoughts" are presented as blog posts. The latter were quite frequent early on when medical interference was also commonplace. Having "graduated" now to the post-two-year cancer free status, my urologist decided to back off a bit. Clear cystoscopy and 3 BCG treatments in March, then no more visits to him until September 9. April-August created a five month window, the longest time I have gone between medical things since all this started over two years ago.

For the past two years solid my primary focus has been doing research, doing medical treatments, changing diet, lifestyle, and supplement regimens, and even some hated exercise. I even devised a logic chart for a multi-modal attack on any type of cancer. Many good things have happened in addition to the cancer-free status - I have lost weight, my complexion has cleared up completely, my hair is growing back (filling in a male pattern bald spot, NOT from having been killed by chemo or radiation), I feel great, and I even look better. My own father did not recognize me when I accosted him in a crowded room a couple of weeks ago. Having five months now free from all this focus is entirely new territory. Now that I feel and look better and have nothing binding me to focus fully on health and medicine, I must admit that I was fully unprepared to deal with it. I suppose an analogy might be to put a lot of effort into climbing a mountain - so much effort and focus that, upon reaching the top, the climber is at a loss for what to do next. Take photos? Jump for joy? Have lunch? Open champagne? And so, nonplussed, our climber just stands there.

And that brings us to today's topic. I had steadfastly refused to plan beyond the next cystoscopy for over one year, and only cautiously planned things a couple of weeks beyond for the past year. Four times we planned big vacations just before the next cystoscopy Judgment Days (two to Mexico and two 10-day motorcycle trips), just to get what might potentially be one last big trip before any bad news. Having "stood motionless on top of the mountain" for nearly a month, it is now time to focus on mental health in addition to physical health. To be sure the two are linked, and I have been maintaining a positive attitude. But this new approach goes beyond - it takes me to a place to begin to visualize NOT dealing with cancer, but to LIVING with cancer. Realizing and internalizing that BLADDER CANCER IS NOT A DEATH SENTENCE. While there is still a high probability of recurrence, I am doing everything I can to battle it, and any recurrence should not be much more than a nuisance.

So what does it mean to begin LIVING again? I decided to start small. At the beginning of May we joined my parents for a few days of rest and recreation in Las Vegas. It is a 6 hour drive from here to there, and we had a great time dining, going to shows, relaxing, and even a modicum of gambling (I was a net winner at that). So what to do next? It had been my habit, pre-bladder-cancer, to take my birthday off work each year and go for a motorcycle trip by myself. This trip refreshed my spirit and made coping with the aging process easier. As an introvert I become energized during times spent totally alone, and motorcycling is a perfect hobby for me. I don't have a Harley, and I don't go to Sturgis or any other pack-mentality type of gathering. Instead I have a Honda ST1300, and I tend to ride alone, or alone with my wife as a passenger, or maybe on occasion with one or two other riders. But the birthday trip is always a solo trip - the first of the season. Over the years it had expanded from one day to a long weekend. And I had skipped 2008 and 2009. And my birthday is in late May, making the ritual bike trip a perfect next step to begin living life again. So four days were set aside with destination to be determined on a daily basis, driven primarily by weather factors. This is difficult to explain to those that don't have the bug. A circle of friends of mine who have the same kind of bike developed a term for a fictitious drug, motorcyclene, which is akin to the endorphin high experienced by athletes. While not physically difficult, motorcycling demands intense mental concentration and tight control of fine motor skills for long periods of time, leaving the rider both exhausted and refreshed. My friend described it like this:

On the open range the road, the landscape, and the machine all provide an experience that is for me soul centering. The rhythm of the ride is at once calming, reassuring. It is rarely achieved until more than a hundred miles have been traveled. This period of lonely introspection and intense observation yields a sense of appreciation and perspective of life that I've never experienced in any other endeavor. It is like meditation, but perhaps a little more like worship. The intensity of concentration required is at once enormous and yet completely liberating*.

And so it went. Four days, 1,800 miles (almost 2900km), 3 nights in hotels, meals ranging from fine dining to a burrito at a roadside picnic table, and weather that was less than cooperative, I have returned - relaxed, refreshed, revitalized, and ready to consider LIVING again. Whatever you do for fun, be assured that the day will come, given hard work on your part along with your doctors, that you can consider living again.

This birthday was #51 for me. I have discovered through a friend that in Brazil the 51st birthday is always called "A good idea!" It seems that the national alcoholic drink, the caipirinha, is made with a distilled spirit similar to rum, called cachaça. While I have not tried either the drink or the ingredient, there is some appeal. As it turns out the most popular brand of cachaça in Brazil is Cachaça 51, and their advertising catch phrase is, "uma boa idéia." This translates to "a good idea." So like Coca-Cola is "the real thing," 51 is "a good idea." So my good idea to celebrate my good idea birthday was to go on a long motorcycle ride. Details with 25+ high definition photos and NO MEDICAL CONTENT whatsoever may be found on a separate page,linked below. Have a virtual slice of my 51st birthday cake and follow along by clicking on the photo or link below...

A Good Idea!

*Warren C. Harhay, June 1, 1999

Updates From Around the World - April 24, 2010

Bladder cancer continues to emerge to be discovered in new people every day. Judging from the people who hits this blog and the links they investigate, I surmise that most of you seem to be finding potentially helpful things out in cyberspace from my links, discourses, rants and so forth. On occasion I get some feedback indicating that this is the case:
Dale G. comment: I just wanted to say thank you for your blog. I just learned this morning that I have bladder cancer, and there is such a tremendous amount of information here - it's very helpful to be able to read about someone else who's gone through this. Thank you for sharing your experiences.
Chris S. comment: Thanks for the blog. Will start this in a few weeks and after reading this I have no worries. Best of Luck!

Some even list their entire lifestyle, giving me some encouragement. This was how one lady signed a note alerting me to an incorrect link (which I was happy to fix).Thank you for your web page.
Jenn Charlene J.
T1G3 Non-Invasive
TURB
BCG 5 of 6
Budwig FOCC
Beta Glucans
Green Tea
Minimized meat/organic chicken
Organic veggies

So I will continue here as long as it seems to be helpful to you out there...

As for our regulars, we have some March/April updates.

HK in Toronto had his cystoscopy on April 6 and was found to be all clear. This news was a welcome relief, as HK is one of the few unfortunates that absolutely could not tolerate the BCG treatments. He had unbearable pain which endured for months afterward. The Canadian doctors finally determined that he has a condition called horseshoe kidney, which basically means that he has one large, connected kidney rather than two. Most likely the two kidneys did not separate before birth, and continued to grow as a unit. The doctors don't think the condition causes his pain, and have prescribed some pretty heavy drugs for enlarged prostate and inflammation. In any case his life now continues at a state of reduced misery. We can all be thankful, and should hope and pray that his cancer does not recur. Not sure what treatments they will consider instead of BCG, should he have a recurrence and another TURBT surgery.

Robert S. in New York continues do well, despite the disadvantage of receiving his care from the smartest doctors in the universe at Memorial Sloan-Kettering. The problem with the smartest people is that they presume there is nothing more to learn, so Robert (even though he all but demanded it) did not receive a chemo bake post-TURBT, nor will he receive BCG maintenance. The reason given for the latter is that "most patients cancel before three years." By "cancel" they mean they can't tolerate the treatments, not mortality! While this was certainly true 20 years ago, reduced frequency and dosage treatments have been the norm since at least 1999. So while the geniuses at MSK don't have "sufficient data" in their own little bubble, plenty of peer-reviewed, published evidence is available in the US. I suggest we may need to view Wall Street doctors with the same skepticism we now use for Wall Street bankers. In any case I am glad Robert is spared the misery of the treatments, and I hope he is spared any recurrence of bladder cancer. As of April he is 16 months cancer-free, and counting!

Robert passes on the following tip for those using the Budwig Flax Oil and Cottage Cheese (FOCC) diet. "Learned a trick for the cottage cheese cocktail. I buy the pre whipped Friendship cottage cheese--drinks up the flax seed oil really nicely and seems the same as when I use the hand held blender-without the aggravation." It turns out that pre-whipped cottage cheese is only readily available on the East Coast of the USA, so the rest of us will have to continue to make our own!

Ed B. in Washington State reports ALL CLEAR from his cystoscopy on March 24, marking six months and counting... He has some enlarged prostate and elevated PSA to deal with, and for now the doctors are prescribing dietary approaches rather than medicine. He is also battling COPD/emphysema. Ed admits that a lifetime of smoking and poor diet may have had a contributing effect. "I was in the Air Force for thirty three years and can still remember the free Old Gold and sometime Lucky Strike cigarettes that the Red Cross gave us. You probably know that there is a correlation between tobacco use and bladder cancer. Well the lung issues are many times more that correlation. So I have both." We know that it's never too late for a radical lifestyle change to be effective, so we are sending positive waves in his direction!

David F. in England was shocked to have a tiny tumor discovered on what was to be his final hard cystoscopy (with general anesthesia) and biopsies. The good news is he returned home on the same day of the procedure, for the first time ever. The bad news is that he was ready to be "finished" with everything but routine annual flexible cystoscopies. But now more BCGs and biopsies are probably in his future. As usual with the British system, he has to cool his heels for a couple weeks before they can see him, even though the follow-up appointment was scheduled "sooner rather than later." The tumor was removed and presumably sent for analysis, so there is a chance that it was not cancer. We shall all wait together to see what the consultant says.

Asya in California had all of us men convinced that we were wimps and whiners after her TURBT experience. Sadly, after convincing herself she was cured after 6 months, she had a recurrence at 9 months. Had another TURBT and handled all with aplomb again. We hope for the best for her as her cancer-free clock was re-set on March 12.

Jeff in the UK reports, "Thought I'd let you know the consultant told me today that the BCG has worked and that I am clear. I'm due to start boosters next week. A problem occurred midway through the BCG treatment in that one of my ureters was blocked by scar tissue, from earlier treatment, and I had to have a stent fitted. It only adds to the discomfort. They are looking at options to enlarge the opening and I should have something done before Christmas. Anyway I thought I'd let you know that all the 'discomfort' has been worth it, for me at least."

And Larry in St. George, UT (practically a neighbor) left a comment on a very old post, so most of you probably did not get to see it. I thought it was worth re-printing here:

Thanks for the blog and your story which makes me feel I am not the only one going thru this. After surgery in August to remove the T-1 aggressive tumor which had not invaded the muscle wall, I followed a 8 week regimen of BCG followed by a scope. Everything was OK. In the interim I had my annual physical which showed a spiked PSA. My urologist was concerned but said BCG sometimes has an effect on the prostate. At that point I thought I had bladder cancer AND prostate cancer. Before we started the 3 week treatments, I had another PSA which was normal. Then I started the 3-week series in Year 1.
The first scope a week ago, showed the tumor had returned. The urologist cut a specimen, told my wife to expect another TURBT the following week and asked to see us three days later after he received the pathology report. We were scared out of our minds. I'm sure there were a lot of prayers were said in my behalf when close friends and family learned. When we returned to the Dr's office, he told us that there was no tumor!! It was a small amount of the BCG materials that had stuck in the bladder. He assured us there was no danger of sepsis. Thanks be to God! We went from scared to giddy. Now a week later, I have decided that as much as I hate the BCG treatments and the way they make me feel afterward, I welcome them as the only alternative.
I have never been a person who puts much stock in "karma" but.....the rest of the story. In the 1980's, I was the first employee of a non-existent cancer center at West Virginia University Medical Center. My goal was to raise enough private funds to convince Sen. Robert Byrd to make large amounts of federal aid available to build the center. I did what I was supposed to and Sen Byrd delivered. Now the Mary Babb Randolph Cancer Center is a large fully functioning center. Even in the early days it focused as much on research as it did on treatment. A young researcher joined us in those first years. My job at that point was to understand enough about cancer research that I could translate it into layman's language for potential donors. This young researcher was doing something with bovine udders and it had to do with bladder cancer. All this was still in my faint memories 25 years later when I started researching what BCG was and how it worked. Yes, Dr. Don Lamm was that researcher. My urologist states that he is the world authority on BCG. So what goes around comes around...positively in this case. Thanks for the opportunity to share.

So we have good news and not-so-good news, but all are looking forward to positive outcomes and a cancer-free future. Stay tuned to this space for further updates.

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:

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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!

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

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

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

What do people do during Phase 1? One lady reported to me that she drives to the bargain store and walks around browsing and shopping, then contiues home before the 2 hour mark. Others sit at their computers, watch TV, or whatever. If you are not active, it is best to move around - e.g. lie in a bed and switch from supine to prone and from side to side. Since I have an hour drive home and a friendly driver, I lie in the back - flipping position every 15 min while reading a magazine. At home I usually update the Current Status of the blog and go to bed, continuing to flip while watching TV and hydrating. Since a few bubbles are usually present from the instillation process, some movement is desirable so that the entire bladder lining is exposed to the BCG. If you feel like it, you could eat a meal during Phase 1, although I usually don't feel like it. I do ALWAYS eat a small meal during Phase 2. My protocol is the extreme, of course - consistent with my nature.
Phase 2 - The Special Handling Period - Now you are officially a biohazard and peeing toxic waste, and the next six hours are a matter of peeing and drinking and peeing some more. Since the recommendation is that the pee be sterilized by bleach for 20 minutes, it is best to tailor your fluid intake to ensure that you don't need to go more often than every 20 minutes. And in the early BCGs this was not always easy or even possible! As a BCG veteran I have the intake output cycle down to 20-40 minutes between. For men it is important to remember to assume a sitting position to pee. This position avoids splashing the BCG cooties around your bathroom. If you have any pain, cramping, or voiding issues, sitting up as straight as possible rather than bending forward will help. I have included a handy sign at right for those of you who prefer visual instructions. Side effects during Phase 2 can range from essentially nothing (last week and my first two ever), to mild burning and headaches, to fairly intense pain, cramps and burning and other things better described elsewhere. For pain and cramping my doctor says I can take up to 4 ibuprofen tablets (500mg each), which is four times the non-prescription dose. There appears to be no rhyme or reason to whether your Phase 2 will be easy or hard, although in general each successive one in a series will be increasingly worse.

A word about eating. Towards the end of Phase 2 and during ALL of Phase 3 you will have no appetite at all. If, like me, you have not eaten since the night before, your system will not have the energy it needs to recover from the BCG. So I ALWAYS eat during Phase 2. Why then as opposed to Phase 1? For me there are several reasons - firstly I do a careful cleaning of the affected area at the end of Phase 1, clean the toilet with bleach, and wash my hands thoroughly with soap and hot water - even though I used gloves. So I feel like this is the time I am the safest from a cleanliness standpoint. Second, I know I will have at least 30 minutes between times to pee, leaving plenty of time. And last, there lately has been a problem with my system getting stimulated by the BCG - so that I nearly always need to defecate within the first hour. I prefer to have all that behind me before eating - pun intended. As for what to eat, I found that anything heavy in protein (meat) or fat (cheese) tends to sit in my stomach like a brick, so I prefer a thin, vegetable soup with a piece of multigrain toast. And I enjoy it, because I know I will not be eating for a while!
Phase 3 - The Evening After - After my final pee at or after the six hour Phase 2, the first thing I do after pouring the bleach in and starting the 20 minute timer is clean the bathroom - toilet area and sink, and dispose of the trash in a plastic bag - including my sacrificial underwear for the day. Then I take a LONG hot shower. We are talking 30 minutes of scalding water. It is a waste and a luxury, but at this point it has been earned. While physically you don't need to really clean more than you have been doing, the shower provides a sort of mental cleansing, and much appreciated warmth - especially in winter. It is also important to maintain the hydration and urination to at least half a quart per hour until bedtime. Phase 3 is marked by a TOTAL loss of appetite, headache, body aches, and for me there is an effect I call brain-fog. Cognitive functions are turned off. Doing something simple like converting meters to inches requires 15 minutes of intense concentration, even if you cheat and use Google calculator! I typically prefer to be alone, not having to comprehend what anyone says to me. If I watch TV, I seek out the most mindless shows possible - sadly not difficult these days with so many choices. If my only pain is headache, I take 1000mg of acetaminophen (2 extra strength tablets). If I have any body aches or indistinct stiffness - and especially if there is any cramping in the kidney area, I take 1000mg of ibuprofen (2 regular tablets). After about 3-4 hours the brain fog will start to fade and Phase 3 will be near its end. How do you know when it is over? For me, I become suddenly hungry - starving mad hungry, after hours and hours where even the thought of food is nauseating. This generally occurs 5-6 hours after the end of Phase 2. I have to be careful again not to eat much. Because I am about to go to sleep, and also because the system is working to battle the BCG stimulation, any heavy meal will cause stomach cramps and indigestion within 2 hours. So I generally have a couple of pieces of toast (no butter) with some fruit preserves or honey. I would describe Phase 3 symptoms with the term "general malaise," which basically means it's indescribable. It is a sort of abstract thing where you feel tired and awful without any specific pain of much import. Since the term is an abstraction, I have chosen an abstract photo which seems to capture it.
Phase 4 - The Day After - After my first few BCGs I had only a vague brain fog the day after instillation. But now I have been having more of the famous "general malaise" and flu-like symptoms - exhaustion, cramping, aches, pains, stiffness, chills, headache, and so forth. This go round it was a mild episode, but after my 3rd treatment last September I stayed in bed pretty much all day. Again this is highly variable - and it's a good thing. It shows the BCG is working to fool the body into marshaling all its forces to fight a disease. In this case there is no bladder infection, but that is the target area, and the theory says that the fight to kill the imaginary infection serves to keep the cancer at bay in 50% of the cases where maintenance protocol is used. So don't be afraid to gulp ibuprofen, slam fluids, and rest for a day. Because at the end of Phase 4 you will feel almost as good as new, except for the minor discomfort from peeing that lasts for weeks. Even that minor discomfort is a blessing, serving to remind that the medicine is doing the trick!

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

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

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

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

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

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

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

Click to enlarge!

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

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

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

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

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

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

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

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

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

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

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

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

Head Cold Persistence & Mexico - Quick Update - February 23, 2010

I wonder, even with all the things I am doing to boost my immune system, if my general resistance to diseases is low. When colds and flu buzz around the workplace, I never used to catch them. Even with my out of shape, overweight, poor-diet lifestyle, my resistance to common diseases was high. Now it is different. I have had 3 colds in the past 18 months, versus an average of 1 per 3-4 years before. With my BCG-stimulated immune system on hyperdrive, what is up with that? This last one was a killer cold. NO - it was not H1N1 swine flu or whatever - no fever or other symptoms. This was the type of head cold from which commercials are made. Started with a burning in the throat and became 3 days of severe sore throat. Then all that went away and was replaced by agonizing head congestion. The kind where you feel like there is a tanker truck of mucus compressed inside of your head. For about 2 days I was fully non-functional. Then the congestion dropped into the chest, and took about 2 weeks to slowly clear. Coughing all night long for the first week, and using tissues by the case, it was pretty rough going. I stayed home to work most days to prevent spreading it further. It was not until day 22 that I felt pretty much "normal" again.

I have taken so many steps to increase my immune function, and they were powerless against this virus. Organic, low protein diet, vitamins, supplements, immune system boosters (beta glucans), and antioxidants. May as well have been taking chocolate cake for all the good they did. People at work that ignored it ended up with bronchitis or pneumonia. It was a bad one. Almost like some kind of 3-week bio-weapon!

I guess it goes to show you that some things will still kick your butt, no matter how healthy you are. Sadly, I did manage to give it to my wife, and was fully sympathetic to her misery and our powerlessness to do anything about it. Yet all is well that ends well, and both of us were fully over the cold before we left for Mexico - but only with a day to spare!

In Mexico we had an awesome time despite unseasonably rainy and cool weather. We drove about 1000 miles meandering from Puerto Vallarta on the Pacific coast to Guadalajara in the center of the country. The scenery was rich and varied - seacoast, jungle, mountains, volcanoes, farmland, and urban settings surprised us at every turn. And you will be pleased to know that we did not waste an opportunity to drive through the town of Tequila and enjoy some of the famous local products there.

Setting aside some weight gain (only by me) it was a great trip. The food, beer, and people were all wonderful, and we are eager to return again. This rest and refreshment was purposely timed to come before my next cystoscopy, scheduled soon - on Thursday, March 4. Stay tuned to this space for results and details!

How YOU Can Help Someone With Cancer - January 23, 2010

One thing that is very difficult in cancer situations is dealing with the people around you who DON'T have cancer. These folks want first and foremost to know that you are OK, and that you are not about to die. Beyond that, few will want details. Almost all will say, "If there's anything I can do, please let me know!" But nearly everyone will be frustrated, because there is really nothing they can do to help out someone who has cancer - UNTIL NOW! For bladder cancer the help needed is not much - a ride to and from the hospital for TURBTs, maybe some meals at home during recovery. Rides to and from BCG are nice to have, but not fully necessary, and meals during BCG days are not a big priority. And for flexible cystoscopy, even the ride is not really necessary. For other kinds of cancer, especially those involving chemotherapy or radiation, much more help can be provided. Certainly rides to and from treatments and meals for days afterward. And now I have some information on a new group that is doing something really helpful.

Cleaning For A Reason is a non-profit organization that provides one professional house cleaning service per month for up to four months for women undergoing cancer treatments - primarily chemotherapy, but others are considered. The charity is very careful to check that their services are provided to those with legitimate needs. Even so, the demand for their services is so great that they limit the applications to 200 per week - 50 per day on Monday through Thursday. Cancer patients virtually line up to apply during the open windows, and they process about 8 applications per minute until the limit is reached. These statistics can be somewhat discouraging, but they show how deep the need is.

Since few of us bladder cancer patients would need this service, and even fewer of us are women who would qualify, why do I mention it here? Simply because ALL of us can participate in helping cancer patients by supporting this charity! If people ask you what they can do to help, a donation here provides direct help in the most practical way - professional house cleaning. So I encourage you to check out the Cleaning for a Reason Website HERE, and see if you can encourage yourself or your friends by providing them this opportunity to give some real help to some that are suffering through cancer treatments. If you have a cleaning service or know somebody who does, more affiliates are needed all over the US and Canada. Please take a few minutes and check out this wonderful opportunity!

New Year, New Calendar of Treatments - January 1, 2010

First off I want to wish all of you (mostly anonymous) readers an optimistic and joyous new year for 2010. Whether you have cancer or you are supporting someone who does, your own positive attitude is a key element under your control that will help everything else work better and pave the way for staying ahead of bladder cancer, or any cancer. Do not accept that cancer is a death sentence, a done deal, but accept that working together with the doctors on the remedies they know PLUS doing some additional things can indeed keep the cancer at bay. And all of this is leveraged even more by positive attitudes. Read more about the importance of attitude here.

One thing I did after my last cystoscopy and all clear report a few weeks ago is update my treatment calendar. I initially published this calendar almost a year ago. And while it helped me to visualize what lies ahead, and many of you have looked at it, I am forced to admit that it is really difficult to interpret. Even Dr. Hopkins' eyes glazed over when I showed it to him. So I decided to re-work it and make it more clear. The thing that makes it difficult is that we have to line up three timelines: the cystoscopy schedule from Dr. Hopkins, the BCG maintenance schedule from Dr. Lamm, and the CT scan schedule from Dr. Hopkins. Complicating this fact is that the BCG and cystoscopy are driven from different start dates.

Here is Dr. Hopkins cystoscopy plan that he outlined to me verbally: Visual inspection via cystoscope every 3 months post TURBT for the first two years, every 6 months for the next two years, and then annually for life - as long as no cancer is detected. Along with each scoping we will do a urine cytology test. The start date for these is late May, 2008, when I completed my second TURBT. Additionally he requires a CT scan 12 months post TURBT then every 18 months. Dr. Hopkins is always quick to point out that there is plenty of leeway in these timings, as there is nothing requiring precision in this other than convenience for human beings to use calendars.

Here is Dr. Lamm's BCG maintenance schedule for me, to which Dr. Hopkins has agreed. After initial 6 BCG, maintenance series of (up to) three at 3, 6, 12, 18, and 24 months, annually to 6 years, then at year 8, 10, and 12. Since the initial 6 BCGs were 2 months after the TURBT, this gives a slightly different start date.

Given all of this, I created a different timeline for cystoscopy, BCG, and CT Scans - forcing them a few weeks now and then to line up properly. And everything pretty much works until the year 2015. Uncharacteristically for me, I am not going to worry about that for a while...

So here is the treatment calendar as of today. Am I depressed that BCG continues until 2020? Not at all - I look forward to being alive and fine at that time, and a bottle of resveratrol-laden red wine to celebrate!

Click to enlarge!