Not Everything That Happens is Cancer - 9 June 2012

I have to thank a couple of blog-readers for some inspiration for new posts.  First goes  to Ben, the Mobile Biohazard Man in Louisiana, who shared a recent diagnostic ordeal that reminds me of Sebastian's false alarm reported a couple of posts ago, way back in March of this year!  Another goes to new reader and "fraternity member" Steven, who correctly spells his first name the same way I do.  His prompting will lead to another new post in a week or two.

Back to Ben in Louisiana.  As part of his attention to general health, he went to his primary doctor (not the urologist) for a routine check up at the end of April.  Blood work was taken in advance to find that his PSA level had continued to elevate from 1.2 to 3.5 and now up to 5.4.  While this is not unusual for BCG patients, the doctor was thorough and performed a routine and quite unpleasant procedure used for men called DRE.  (As a side note, my PSA has remained low at 0.6 recently, and my DREs had all been negative except to note normal growth in the prostate.) 

Unfortunately for Ben, and the doctor detected a "small lump" on the prostate.  At this point the natural reaction is panic - there may be prostate cancer in addition to the bladder cancer.  Both Ben and his wife were very concerned.  In early May, Ben visited his urologist for a follow-up, and the second doctor confirmed the presence of the lump - estimated at 8mm in size (same as Sebastian's bladder polyp).  The specialist felt that his preliminary opinion was a clogged duct, small cyst, or perhaps a granuloma (which is quite unusual and not as serious as it sounds). 

The only way to be sure was to conduct a prostate biopsy, another quite unpleasant procedure - mostly due to the sounds one hears.  Ben's took place in late May, using the common "rear entry" method.  Here is how Ben described it in his own words:

Now for all those that have not had prostate biopsy, just let me say that is an eye opening and memorable experience. He punched 14 holes thru wall of colon and into prostate under local. Don’t let me exaggerate, really not much pain, but quite unnerving, the needle gun makes a loud click with ever shot.

Three days (and sleepless nights) later, the pathology results came in - NO MALIGNANCY, but inflammation, fibrosis, and granuloma, which in this case was a cluster of cells (probably BCG) that had settled in the prostate and became encapsulated by the body for protection - thus forming the small lump the doctors felt.  There is no treatment necessary as the body will slowly absorb and deconstruct the granuloma over time in its natural healing process.  So all is well that ends well!

Subsequent to the original posting, I learned that both Ben in Alabama and new reader Steven have had similar experiences, so this may not be so uncommon after all...

Ben's advice is, "Don't Panic!"  Lots of things cause PSA to rise, including BCG, and not all prostate lumps are cancerous.

The Ides of March Judgment Day #10 - March 15, 2012

Julius Caesar's bloody assassination on March 15, 44 B.C., forever marked March 15, or the Ides of March, as a day of infamy. And the character of the Soothsayer created by William Shakespeare for his play Julius Caesar has given English-speakers a famous line:

CAESAR Who is it in the press that calls on me? I hear a tongue, shriller than all the music, Cry 'Caesar!' Speak; Caesar is turn'd to hear.  
Soothsayer Beware the ides of March. 
CAESAR What man is that?  
BRUTUS A soothsayer bids you beware the ides of March.  
CAESAR Set him before me; let me see his face.  
CASSIUS Fellow, come from the throng; look upon Caesar.  
CAESAR What say'st thou to me now? speak once again.  
Soothsayer Beware the ides of March.  
CAESAR He is a dreamer; let us leave him: pass.

While Shakespeare's Caesar was ill-advised to ignore the Soothsayer's advice, I fared well today.  Although the day retains a certain air of destiny that seemed appropriate when I scheduled my cystoscopy six months ago.  Flirting with danger?  Hardly. The news was all good - ALL CLEAR now marking over 45 months cancer free! 

Many of you have sent notes of encouragement, well-wishes, reports of prayers and  other helpful things, and I thank you all for them.  For some reason I had less trepidation this time than in the past - perhaps the success of diet and improvement in various blood test variables has re-enforced my belief that I am doing all I can to stay cancer free.  That coupled with the ever-present and simple fact that GOD IS GOOD, ALL THE TIME!

Most of our small "fraternity" here have had similarly good results, so the pressure was on for me to continue the trend.  I was happy to continue it.  We arrived ten minutes before the appointed 9AM time-frame, did the paperwork, urine sample, etc. and were shown to the exam room.  I was pleased to see the Storz scope stationed there, a much nicer instrument that had produced no side effects from the exam last time.   I had taken the liberty to call in advance to try to negotiate, persuade, incentivize, bribe, or whatever to make sure this happened.  I even metaphorically twisted the arm of Gloria, our favorite medical assistant, to make it happen.  On all fronts I was assured of two things:

1) All three scopes (optical, low-def video, and high-def video) are exactly the same diameter, and
2) The assignment of scopes to exam rooms is purely random and not subject to my influence

So call it coincidence, karma, destiny, fate, or providence - whatever.  The scope was there.  Only one thing differed.  Last time they had given me a Lidocaine prep, an unpleasant extra that I declined for BCGs in the past.  This time there was none.  I decided to go with the setup as presented to serve as a new data point for all.  Was it the scope or the Lidocaine that made the difference last time.  While there was some discomfort, it was still less than either of the other two scopes, and certainly less than experienced initially when the Lidocaine prep is applied.  So I do prefer to do without the prep, and the Storz scope is still better for me than the other two.  Could it all be in my mind, or a more flexible probe, or some other factor?  All I can rule out was the video quality, since I could hardly see the monitor at all due to its strange angle today.

The Doctor was pleasant, quick, and efficient and the entire exam from when he entered the room until he left was less than 5 minutes.  Good news on all fronts.  Return as planned in September for another scope to be followed by 3 more BCGs, at which point the scope inspections move to annually.


Having the good news assimilated, and after cleanup and re-dressing, we scheduled the September events and received a prophylactic dosage of antibiotic (Cipro) to ward off anything incidentally induced by the procedure. The next order of business was to celebrate the good news.  With somewhat less trepidation, there was less stress-relief exhaustion and perhaps a tad of euphoria.  My wife suggested an Irish jig, but I need to lose a few more pounds before subjecting the world to that!  And we were hungry - as I chose to skip breakfast (my usual practice) to avoid giving my stomach any reason for upset prior to or during the procedure.  Temptation was to go have a celebratory breakfast, but my diet dictates strict limits on what is eaten until Saturday.  So we had a high protein breakfast and returned home for a day of March Madness basketball.  We will have some cookies and other goodies plus Italian food for dinner on Saturday. Maybe even some green beer, corned beef, and cabbage.  It will certainly be a happy St. Patrick's Day here.  As for today, red wine is allowed, so we indulged in a bottle of EIEIO Pinot Noir.  It was fantastic!

Bladder Cancer WAY South of the Equator! - March 3, 2012

In a few previous posts I have mentioned "El Caligrafo" which may be translated "The Calligrapher," or perhaps more accurately "The Scribbler."  Despite the appearances he is not actually Batman's latest Latin nemesis, but rather a really great fellow named Sebastián B. from Argentina. His nickname comes from his hobby as an amateur writer of fiction.  He and I have a lot in common: married (over 20 years), no children, loves dogs, loves travel, works in engineering (civil), has a great sense of humor, and bladder cancer.  His wife, Marisa, is also an engineer (systems).  He also used to refer to himself as Oldman, but at only 45 he is a bit younger than me, so there will be no further reference to that!

Sebastián and Marisa live in Rosario, the second largest city in Argentina with over a million population, located about 300km (188 miles) from the capital city of Buenos Aires.  He sent me a few official photos of the city:

They are in the middle of summer now in the Southern Hemisphere, and the family has just completed a nice Carnival holiday at nearby Victoria.  Even their dog, Chiche was able to go with them.  According to Sebastián, Chiche (pictured below) is "not precisely a Rottweiler," and he loves to ride in the car!

The protocol for bladder cancer treatment in Argentina is quite similar to the US standard of care.  Diagnosis with urine test, ultrasound, x-ray, and cystoscopy, then TURBT surgery (one or more), and then BCG treatments with cystoscopy inspection for life.  One difference is that routine bladder biopsies are performed after BCG - 15 samples!  Sebastián initially contacted me with a few suggestions.  He has independently adopted a similar attitude to mine regarding diet and lifestyle changes.  Sebastian's diet is covered in this post.  Another suggestion concerned relaxation before scopes and other procedures.  Sebastián has found daily, low-dose (75mg) pregabalin (sold in the US under the brand name Lyrica) to be quite effective in taking the "edge" off pre-procedure anxiety.  He has found no side-effects, drowsiness, or difficulty concentrating,and he offers this following item from Medscape Medical News as support:

Pregabalin Safe, Effective in Generalized Anxiety Disorder 
Laurie Barclay, MD March 7, 2003

Pregabalin was safe and effective in treating generalized anxiety disorder, according to the results of a placebo-controlled trial reported in the March issue of the American Journal of Psychiatry. This drug was almost as effective as benzodiazepines without withdrawal symptoms, making it a potentially good alternative. It may also be beneficial in a number of other neuropsychiatric disorders. "Recent attempts to develop nonbenzodiazepine anxiolytic agents with novel mechanisms have been mostly unsuccessful," write Atul C. Pande, MD, FRCPC, from Pfizer Global Research and Development at Ann Arbor Laboratories in Michigan, and colleagues. "One novel agent, pregabalin, a structural analogue of gamma-aminobutyric acid (GABA), is currently in development as an anxiolytic on the basis of its profile of pharmacologic activity in animal behavioral models." In this double-blind study, 276 patients meeting DSM-IV criteria for generalized anxiety disorder were randomized to treatment with pregabalin (150 mg/day or 600 mg/day), lorazepam (6 mg/day), or placebo. Some subjects had mild depressive symptoms, but patients with other comorbid psychiatric disorders were excluded. After a one-week placebo lead-in, subjects received four weeks of treatment followed by a one-week dose taper. Mean decreases in total Hamilton anxiety scale score from baseline to endpoint for each group were –9.2 for pregabalin 150 mg/day, –10.3 for pregabalin 600 mg/day, and –12.0 for lorazepam, which were significantly greater than –6.8 for placebo. Pregabalin's effect on the total Hamilton anxiety scale score began as early as week 1. Compared with the other groups, fewer patients in the lorazepam group completed the trial (59% vs. 73% for placebo, 71% for 600 mg/day pregabalin, and 90% for 150 mg/day pregabalin.) Somnolence and dizziness were the most frequent adverse events reported for pregabalin and lorazepam. No patients receiving pregabalin reported serious adverse events or had evidence of withdrawal syndrome. "These results indicate that pregabalin is an effective, rapidly acting, and safe treatment for generalized anxiety disorder," the authors write. "In short-term treatment, pregabalin does not appear to have the withdrawal symptoms associated with the benzodiazepines.... Pregabalin is also currently under study for treatment of seizure disorders and neuropathic pain [and it] may have activity in several nervous system disorders other than anxiety." 

Am J Psych. 2003;2160:533-540 Reviewed by Gary D. Vogin, MD 

 I have not tried it, as I tend to be on-edge pretty much all the time, so for me the pre-procedure times are simply a matter of degree.  Ever the creative optimist, Sebastián suggests a slightly more complex alternative which I can wholeheartedly endorse, involving a tropical island, beach, good weather, and perhaps some ethanol.  The photo below shows Sebastián demonstrating this alternate relaxation technique:

Sebastián has also had some benefit from adding ultrasound checks between cystoscopy, just to add peace of mind.  I shared that ultrasound had not detected anything in my case, but perhaps it cannot hurt to check.  On the other hand, about 3 months after cystoscopy and biopsies came back all clear, Sebastián went in for a precautionary ultrasound that detected a large (8mm) spherical intrusion into the bladder.  Look at the center right side of each photo below - this thing looks huge!

Rather than adding peace of mind, the effect was opposite.  Can you imagine the growth rate of something that size forming after only 3 months?   The doctors told him it could be a "blister," a harmless byproduct of the biopsies, or it could be a tumor.  A TURBT was scheduled for the day after Christmas last year.  On January 3 he got the good news.  The "tumor" was an inflammation of the bladder wall caused by the previous TUR surgery and biopsy.  Supposedly a rare phenomenon, it is completely benign.  God is indeed good, ALL THE TIME.  Sebastián wanted me to post the details here so that others may know that not everything detected after surgery is a problem.

Other advice from Sebastián concerns post-TURBT recovery.  Super-hydration (4+ litres/day), avoid spicy foods or other dietary irritants (citrus and other things high in vitamin C), and chamomile tea.

I want to thank Sebastián and Marisa for sharing his information with us all, and I hope that he can remain cancer-free.  Perhaps we can meet on some tropical island some time to practice our relaxation techniques!

2012 Diet and Exercise Report - January 14, 2012

Happy New Year to all, and a prosperous and cancer-free 2012 is our collective goal!  I have quite a bit of information from Sebastian (El Caligrafo) in Buenos Aires, Argentina.  Look forward to a post about his bladder cancer adventures next month.  Why next month?  Because in North America, every single person (it seems) is focused only on one objective every January - losing weight recently gained from Holiday celebrations!  I disclosed last March that I would be embarking on new and quite unconventional approaches to both diet and exercise, and it's time to report on that now that it is a topic of interest to all.  The bottom line?  My results were entirely positive and somewhat surprising, but not quite the epic success I was secretly hoping for.  What follows is a LONG post on that topic.


You should all be aware of my approach to diet and cancer - to avoid potential cancer-triggers prevalent in our modern food supply - preservatives, dyes, hormones, residual pesticides, fertilizers and other chemicals, while growing healthy bacteria in the digestive tract to aid in nutrient processing.  Avoid sugar in all forms to keep cancer from being overly well-fed.  Avoid chlorinated water that kills intestinal flora.  Exercise enough to get blood and oxygen flows to healthy levels.  This change involved focusing on organic and all-natural foods, avoiding pork, shellfish, sugars (including fructose), and suffering through 30 min of aerobic exercise three times per week.  The food becomes more expensive, and after a month or so when my system cleaned itself out, much more tasty.  Lots of bottled water - spring water or filtered.  I lost about 25 pounds, but slowly gained about half back.  I was eating better, feeling better, and still overweight.  It was time to try something new.


Like most Americans I have tried many diet programs, and all of them led to success in weight loss - but ONLY for as long as you followed them perfectly.  No matter how long you stayed on the program or how much weight was lost, all the weight returned in a fraction of the time once I took a break from the program.  Why take a break?  Most of these diet gurus talk about a "lifestyle change" where one must follow the rules for a lifetime.  The problem?  No matter what the rules were, they became unsustainable.  Give up bread forever?  I am not even a person that likes bread very much, but after six or eight weeks I would have sold my mother for a crust of stale white, processed bread!  The mind (and perhaps the body) will demand these "off limits" foods, and the rest of the world consumes them daily in your presence.  At some point the mind gives in, and then there is a domino effect - "I just ate X (cookie, bread, pizza, beer, etc.)  so I might as well eat Y (an entire bowl of gravy, the rest of that pecan pie, etc.).  And since I ate all that, may as well eat the next thing, and the next..."  And so it goes and you are "off" the diet.  Even if your willpower is strong, eventually something will trigger this chain - a birthday, holiday, vacation, or whatever.


Formal diet programs address the physical component of reducing weight - limiting or eliminating certain foods that induce weight gain and/or limiting quantities of total intake.  And so they fail entirely to address the mental component of dieting.  For whatever reason (joy, depression, boredom) the mind will DEMAND that you:
A) Eat something forbidden, or
B) Eat all you desire, or
C) Both!


What the world needs is a diet where one can consume what one desires most at any given time in unlimited quantities - now THAT would be a plan that anyone could follow!  Enter Tim Ferriss, the most unlikely of candidates, to provide a potential solution.  For those unfamiliar with Tim, he was a salesman and fitness buff who started his own company selling fitness supplements.  Upon finding the lifestyle of a company owner all-consuming and unrewarding (both emotionally and financially), he decided to extricate himself from his business.  As he carefully removed himself from operation after operation, with the intention of just getting away from it, he found the business becoming more and more efficient and lucrative.  When he had removed himself almost completely, he discovered that the break he needed to take provided the best operating model for himself and the business.  He organized his story into the cleverly (albeit misleadingly) titled "The 4-Hour Workweek," which became a New York Times bestseller.  I have this book, and while it "promises" a low-stress work lifestyle, it is actually an excellent book on time management.  If you only incorporate one or two of Tim's ideas, 4HWW is well worth its purchase price. Financial success from the business and the book led him to re-evaluate his lifestyle, and he decided to pursue having fun as a primary objective.  Ultimately he sold the business for a tidy sum and "retired" in style.  His passion drove him to pursue fitness, fun, and other activities to the fullest.  A year ago he published his second book, a massive tome entitled "The 4-Hour Body."  This second book covers EVERYTHING - Losing weight, gaining weight, bulking up, running faster, holding your breath longer, hitting a baseball, and even "bedroom stuff."  Avoid the audio versions (which are abridged), and also do NOT read the thing cover to cover.  It will kill you!  As advised in chapter one, read the chapter groups that apply to your situation of interest.


Lest one suspect that I am shilling for Mr. Ferriss, the observations are my own, and the links above are NOT affiliate links.  I receive no compensation of any kind for ANY information in this blog.


What Ferriss has done is intuitively obvious in retrospect.  The medical community and the engineering community are mutually exclusive.  One is not both a doctor and an engineer - would require a lifetime of specialized study.  Both of these fields (and many others) mostly ignore each other and fully ignore credible bodies of evidence and research because of their sources.  For instance, body builders who take illegal steroids and experiment on themselves with diets, supplements, and exercise routines, professional wrestlers, and many others who choose to ignore convention and experiment on themselves.  Do Tim and I recommend doing such? Absolutely not.  But there are those who do, and they have collectively developed what could be viewed as a body of data that could be used to assess cause and effect when applied in conjunction with data and techniques from the accepted medical, scientific, and a engineering "gentry."  If one sets aside the source and examines only the data, one can synthesize approaches that otherwise would not present themselves.  Combine that with Tim's willingness to do even extreme experiments on himself, and his association with others who the same, and he delivers a set of very novel solutions.  I set aside my prejudices as I read through sections of the book, and decided to give the weight loss regimen for diet and exercise a six month trial.  Parts of it sound crazy, but rigorous detail and data collection (my passion) would serve to identify adverse effects, should there be any.


The first thing to cover is "Minimum Effective Dose," which is the smallest dose (usually of a pharmaceutical drug) that produces an effect.  If this concept holds true for drugs, would it also hold true for other things like dietary inputs, exercise, sleep, etc.?   Applying the concept to exercise, for instance, I found that I could potentially exercise LESS than I was and get the desired effect.  This, of course, was good news to me, since I DESPISE exercise.  Same applied to diet and environmental factors came up with the food input side.  The next thing to change is WHAT to measure.  Weight, of course!  Well, not so much.  Many factors influence weight, so along with weight measurements (which are not really necessary), we also need to measure our body size.  Men need to take six measurements and total them up.  There is no standard for this total, as if varies widely from person to person.  But changes in this sum represent changes in body size and practical things like what size clothing one will wear.  As such, it is a great measure of success before and after, or even of failure.  The measurements are circumferences of::
Left Bicep
Right Bicep
Waistline at belly button
Hips at widest point
Left Quadricep (halfway between knee and groin)
Right Qudricep
for women - add Bust measurement


Only thing left was to figure out how to deal with the mental side - the insurmountable desire for "cheat" foods and binging.  More on that below. Taken all together, Tim's weight loss plan has a number of elements, sleep, cold therapy, supplements, dietary restrictions, diet "breaks," and even exercise.  We decided to implement the plan rigorously.  I chose to wait until after my March, 2011 cystoscopy to provide motivation to make a change.  It was all clear, and I was happy and ready to take the plunge.  We will break the program summary into three parts: Diet, Exercise, and Break.



Diet - along with supplements and other practical advice (like start every morning with a liter of ICE COLD water and finish breakfast within 60 minutes of arising), Tim recommends a high protein, zero sugar, and low/slow carb diet.  This is like a modified version of the infamous Atkins Diet with a few twists.  There are limits on the amount eaten (4 small meals per day), and dairy (especially cheese) is forbidden, along with all fruits and any high glycemic index carbohydrates.  Protein is emphasized in proportion, not quantity, and high fiber vegetables plus legumes (beans and lentils) for carbs.  This diet is fairly limiting in scope - protein such as meat, fish, eggs, and soy (which I tend to avoid) plus beans, lentils, and vegetables.  No sugars of any type including things like sorbitol or xylitol.  Eliminating dairy eliminates lactose as a sugar source.  The idea is to keep blood sugar at a constant, low level and avoid spikes.  The biggest complaint most people have with the diet is boredom - eating the same things over and over again.  This can be offset to a degree by mixing and matching the simple ingredients and creative use of spices, but even the tiniest of cheats introducing sugar or starch will completely negate the effect.  This is a VERY strict diet, but only for limited time frames.  Read on...


Exercise was consuming 45 minutes three times per week with 20 minutes in the "aerobic zone."   This was well below any recommendation from the fitness community, but enough to satisfy my anti-cancer needs.  Under Tim's plan I reduced this to 12-15 minutes of stretches and crunches three times per week - still not pleasant, but much more palatable, and definitely enough to get my heart pumping by the finish.  In addition to other benefits my slouchy, swayback posture began to improve from this routine.


While this reduced exercise regimen was a positive mental influence to stick with the program, what about the uber-strict diet?  Good news here - you only diet for a total of SIX days per week?  What about Day 7?  One still follows the morning routine including an on-plan high-protein breakfast.  But after that until bedtime (or midnight, whichever comes first) one can have ANYTHING in ANY QUANTITY.  It can be a complete binge day.  No rules.  No limits except the time frame.  This clever interlude addresses a number of issues - the mental desire for "forbidden" foods in forbidden quantities.  Shocking the system from a low-carb regimen into a high carb one.  Keeping the body guessing about whether food is scarce but steady or abundant.  Your body becomes accustomed to low doses of high-protein low carb intake and then gets a massive jolt.  It tends to reject most of it and pass it harmlessly into your toilet, while satisfying the mental needs.  Are you craving some forbidden food?  Max wait is six days, and then you can have all you want of it.  Trust me - you won't be craving much for the first couple of days afterward!
 
Clearly this is insane - eat more, exercise less, binge regularly to lose weight and feel better.  It cannot possibly work.  Several people have flat out told me that this is impossible and CANNOT work, including my doctor, a personal trainer, and assorted other smart people.  I agree.  It can't work.  Except for one thing - it DID work for me.  Measurements don't lie.  See below for tale of the scales and tape:

One good example of the many negative comments is a review on Amazon by N. Watson, a Stanford educated physician and martial arts expert.  He says what the smart people told me.  This can't work and does not work on him.  But he is already thin and fit.  Watson flatly states: "It takes more than 4 hours a month in the gym to have a great body. I'm sorry, it just does."  Well excuse me Dr. Watson, but that's BULLSHIT.  I can factually report that the program worked well for both my wife (who is thin already) and for me.  I have dropped 3 pants sizes, tightened my new, smaller belt 4 notches, have improved posture and attitude, and I feel great.  My wife can document proportionally similar happy results.  All despite eating the better part of a dozen KrispyKreme donuts and half a gallon of whole milk on my first break day.  With similar behaviors on subsequent weeks, which do tend to tone down once the mental pressures reduce due to what I call "satiation therapy."  I am not claiming that I have a great body - yet.  But I can see that it is easily achievable given time and faithful adherence to the program.  I am not thin by any means, but so significantly thinner than a year ago that people notice. 
 
NOTE: The diet is for folks who do NOT have active cancer, so the "cheat day" does not feed the cancer directly with a bath of nutrients!


You will note the graph stops in October.  What after that?  I continued to lose weight and inches until Thankgsgiving - which became a 6 day binge.  Bad form.  Back on the wagon until Christmas.  To this point weight went up slightly and inches stayed flat.  But the Christmas break and 15 continuous binge days (not just normal cheating, but big time binging) was able to turn the inches line up.  The belt had to loosen a notch, and pants (still 3 sizes smaller) became tight.  But after 2 weeks back on the program the belt notch has been regained and the inches have leveled off.  I am aiming to lose two more sizes and expect weight to level out around 180 pounds.  And I feel great, as opposed to feeling like crap for most of the break.

For more details I will let you read the 4HB book.  If you buy it used and get a first release, make sure to obtain and incorporate the errata sheet.  Scroll down the page until you find the header 4HB Corrections and Typos.  If you like the book, there is even more stuff that did not make the cut- CLICK HERE.  The book is jam packed with information, and the chapters on sexual performance are right in the middle, so it is near certainty that, if you hand the book to someone, they will open to the middle and see VERY graphic diagrams (not photos) and text.  You have been warned!

There are tons of websites out there from folks who have tried this with varying amounts of success.  One of the most helpful I found is by Luke and Kat, the "Four Hour Body Couple."  He was fit and she was struggling, and both are doing well on the program.  Their website is free and full of good tips and advice from people who have lived it.  It serves as a gateway to advertise Kat's music - she is a Jazz torch singer. 

Here is a listing of the chapters and section headers in the book, which is enormous:
FUNDAMENTALS—FIRST AND FOREMOST 
Rules That Change Rules: Everything Popular Is Wrong 
GROUND ZERO—GETTING STARTED AND SWARAJ 
The Harajuku Moment: The Decision to Become a Complete Human 
Elusive Bodyfat: Where Are You Really? 
From Photos To Fear: Making Failure Impossible 
SUBTRACTING FAT 
The Slow-Carb Diet I: How to Lose 20 Pounds in 30 Days Without Exercise 
Damage Control: Preventing Fat Gain When You Binge 
The Four Horseman of Fat-Loss: PAGG 
Ice Age: Mastering Temperature to Manipulate Weight 
The Glucose Switch: Beautiful Number 100
The Last Mile: Losing the Final 5–10 Pounds 
ADDING MUSCLE 
Building The Perfect Posterior (Or Losing 100+ Pounds) 
Six-Minute Abs: Two Exercises That Actually Work 
From Geek To Freak: How to Gain 34 Pounds in 28 Days 
Occam’s Protocol I: A Minimalist Approach to Mass
IMPROVING SEX 
The 15-Minute Female Orgasm: Part Un 
The 15-Minute Female Orgasm: Part Deux 
Sex Machine I: Adventures in Tripling Testosterone 
Happy Endings and Doubling Sperm Count 
PERFECTING SLEEP 
Engineering The Perfect Night’s Sleep 
Becoming Uberman: Sleeping Less with Polyphasic Sleep 
REVERSING INJURIES 
Reversing “Permanent” Injuries 
How To Pay For A Beach Vacation With One Hospital Visit 
Pre-Hab: Injury-Proofing the Body 
RUNNING FASTER AND FARTHER 
Hacking The NFL Combine I: Preliminaries—Jumping Higher 
Hacking The NFL Combine II: Running Faster 
Ultra-Endurance: Going from 5K to 50K in 12 Weeks—Phase II 
GETTING STRONGER 
Effortless Superhuman: Breaking World Records with Barry Ross 
Eating The Elephant: How To Add 100 Pounds To Your Bench Press 
FROM SWIMMING TO SWINGING 
How I Learned To Swim Effortlessly In 10 Days 
The Architecture Of Babe Ruth 
How To Hold Your Breath Longer Than Houdini 
ON LONGER AND BETTER LIFE 
Living Forever: Vaccines, Bleeding, and Other Fun 
APPENDICES AND EXTRAS 
The Value Of Self-Experimentation 
Spotting Bad Science 101: How Not to Trick Yourself 
The Meatless Machine II: A 28-Day Experiment

Year End Updates - Good News Abounds - December 18. 2011

It's been over six weeks since my last post, and no news (from me) is good news.  It means that life is adjusted to the new "normal," and that Bladder Cancer is not a daily concern. It is good to be more concerned with work, holidays, family and friends than with health.  That said, the new normal includes the looming presence of cancer recurrence and awareness about possible exposures to triggers - especially in food.  Even in the holiday season when "cheating" on the diet is more frequent, I still think about exactly what I will allow myself to cheat on.  Remembering to faithfully take my vitamins and supplements is also more difficult, and I am thankful that I manage to remember most of the time.  I have resumed exercising after 2 months off for BCG and recovery - more time off than was physically necessary, but I had to get mentally prepared to exercise again.  And I still don't enjoy it one bit!

I was contacted recently by Ranveig Røtterud, a lady from Norway who has been dealing with Bladder cancer for some time.  She has started a blog (entirely in Norwegian) to raise awareness and begin sharing information, which I agree is a bit rare concerning this very personal disorder.  Even on the internet where everyone seems to write as if they are invisible and invulnerable!  Ranveig has noted the same reluctance for public speech and information sharing in Norway, and is staging a one-person battle to correct that deficiency.  Her informative blog is called Den gule bloggen which translates rather delightfully as The Yellow Blog.  She has access to some different research than we do, and certainly has a unique and useful spin on bladder cancer.  Do be cautious when using the translated version.  Google translate does some wonderful work, but frequently you will have to use your imagination and ingenuity to work around it's failures.  For instance, I sent her an email in Norwegian that used the abbreviation BC for Bladder Cancer.  Ranveig reported that the Norwegian version came across with "Before Christ."

I also got a note from Alexandra whose father, Daniel, recently passed away after a 14 year battle with Bladder Cancer.  She writes a blog that focuses on dealing with death from a secular viewpoint.  Her musings (which are not for the faint of heart) can be found at https://itsnotmorbid.wordpress.com/game-over/. 

I also had good news from the folks in my Bladder Cancer "fraternity" that keep in contact.  Clear cystoscopies and good news from Ben in Louisiana (Mobile Biohazard Man), HK in Toronto, Ken in Virginia, Sebastian in Buenos Aries, Roy B., and Brian in Atlanta.  Robert S. had a scare, but biopsy came back all clear on him as well.  Keep up the diet, exercise, and good attitudes for more success in the future.


Wishing all of you a Happy Christmas and New Year in 2012! Enjoy the photo below from a friend in Paris.

Dealing with BCG - Lessons Learned - November 5, 2011

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Round 1 This Year

Round 1 Last Year

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

Round 2 Last Year

Round 2 This Year

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

Round 3 Last Year

Round 3 This Year

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

Judgment Day #9 All Clear, and Technology Rocks! - September 8, 2011

First the great and awesome news: Judgment Day #9 came and went with an ALL CLEAR now marking 39 months cancer free!  God is indeed good, all the time!  Of course, trials are not out of the picture, so try to enjoy the following VERY LONG blog posting about the good, the bad, and the ugly of today's Judgment Day!

Trying to get work done the day before a Judgment Day and trying to relax in preparation are pretty much mutually exclusive pursuits.  What will easily make the whole relaxation side impossible is a call from the front office staff at the Urology Clinic informing me that my second (of three) upcoming BCG treatments, optimistically and aggressively scheduled and planned last March, would need to be changed.  Could I possibly come in the afternoon instead of 8:30 in the morning.  Undeniably I could have done so, and even more certain was the fact that I would NOT be doing that!

Just to remind all of you, I do plan these things out in advance for a reason.  The longer in advance, the more likely the chances of getting the earliest appointment in the morning, late in the week.  We want this for two reasons: A) The sooner you start the sooner it is over with for the day; and B) Now that American businesses are all employee-hostile, I have to use "Vacation" days to cover any medical time off, so Friday is the very best day.  BGC treatments are a two day ordeal with the first day consisting of a two-hour holding period followed by a six-hour special handling period, and then add two to six hours for full system flushing and urinary symptoms to dissipate.  The night and next day are consumed by exhaustion, body aches, and "general malaise."  So you want early in the day to get to the end of both Day 1 (to sleep) and Day 2 (to be mostly back to normal) as soon as possible.  And you want late in the week to spread the recovery time over a Saturday and consume only one "Vacation" day.  Worst vacation ever, so logical to minimize it.

Let me recap and paraphrase the friendly phone call for you:

Chirpy female voice: "Hi, this is xxxxxxx, from yyyyyyy Urology Clinic."
 Me: "Hello."
CFV: "I see you have a BCG appointment with Liz on September 23.  She will not be available that morning, so would you mind coming in the afternoon instead?"
Me: "Yes."
CFV: "So would 2:00PM work for you?"
Me: "No."
CFV: "You are not available?"
Me: "You should have one of these BCG treatments yourself."
Slightly less chirpy FV: "Pardon me?"
Me: "If you had any idea what you were requesting, you would never have called me in the first place."
CFV: "Well you see Liz has surgery that morning and won't be available until the afternoon."
Me: "Not my problem"
CFV: "I'm sorry?"
Me: "Look.  There is a 12 hour recovery period from a BCG treatment.  Having it at 2PM means that the soonest I can even think about going to bed is 2AM on Saturday.  Is that what you are sorry about, or is it the fact that I cannot have any food or drink for 16 hours while I wait for Liz to finish her morning business and a leisurely lunch?"
Not at all chirpy FV: "I'll have someone else call you back."
CLICK

This is annoying on so many levels.  The only reason I had Liz scheduled at all was because Dr. Hopkins does surgeries every other Friday, and I was trying to save a "vacation" day!  Someone did indeed call me back, and we explored a few options, none of which were acceptable.  It was down to 2PM, take it or leave it.  I hung up and began stewing, fuming, cursing, and nearly spitting.  I bent a few ears of innocent by-standing coworkers, who were sympathetic (and probably afraid not to be).  A few hours later, I talked to another coworker, TK, whose business (and perhaps her life in general) is about solving problems and getting things done.  We reviewed the options, and came up with two slightly less awful alternatives. 
1) Have the BCG after the cystoscope or the next day, ruining some pre-existing dinner plans as Treatment #1, then do Week 1 and Week 3 as scheduled for treatments #2 and #3, skipping Liz's busy morning.  Problem is that the scope does enough trauma to make BCG ill-advised without several days to recover.
2) Skip Liz's busy morning and delay the treatment until Week 4.  Problem there is that puts recovery right on top of our 28th wedding anniversary.  One could surmise that after the first 26 or so these get to be a matter of routine, but females will often disagree!
3) Suggest to the doc during Week 1 that he give us the BCG and catheter and we do the BCG at home for Week 2.  Probably all kinds of legal and regulatory reasons why that won't work, but I was prepared to be stubborn about it!

What evaporated was all hope of relaxation, deep breathing exercises, or a decent night's sleep.  I forced myself to do one deep breathing set before midnight, and caught about 4 hours of fitful sleep.By morning I was too exhausted to be frustrated, had a nice breakfast and shower, and did some deep breathing practice.  It really does work and really does help.  Did a few more sessions in the car during our 50 minute drive to the clinic.  By the time I arrived, I was as calm as a summer breeze.  Processed in with minimal hassles and was shown to the exam room. I delivered my urine sample and returned, my gaze immediately drawn to the VERY new, very high tech instrument on the exam prep table. I asked the nurse, Is this the new narrow-gauge scope?  "Yes," she replied, "It's even smaller than a catheter!"  While she was not quite right (victim of a Boise State education - it's a football school now), it was exactly the size of a 14 gauge French catheter, and SIGNIFICANTLY smaller in diameter than the old scope.  It also required the use of a very big high-res monitor.  This was enough to make me forget all frustrations for sure.  One of our Bladder Cancer frat buddies, Ben F. in Louisiana (aka Mobile Biohazard Man), used one recently and declared there was no recovery period at all.  This baby was the latest from Karl Storz in Germany, and it looked to be a major improvement.
 
Dr. Hopkins breezed in quickly and, after the usual pleasantries, he got right to work. There was a bit of confusion getting the monitor turned on, but then we were off to the races, and...

NOTHING!

Well, almost nothing.  But nothing compared to past experience.  This Storz endoscope ROCKS!  There has been very minor recovery pain at the very tip end of things, but really nothing.  After cleanup and dressing, I joined the Doc at the scheduling table and we looked at options.  With the low invasion factor from the new scope, Option 1 above moved into first position, and we pursued it.  The problem was that he advised against today, and the Doc was not planning to come in the next day.  But he relented and agreed to come in at 10:30 (which we both know will be 11 or 11:30), but still preferable to 2PM or later.  And BCG starts 1 week sooner.  Still skipping the Liz week, so ending as originally scheduled on September 30.  And now many hours later I can assure you that the smaller scope is absolutely the way to go!