A Legendary Event - March 12, 2013

Today's post is short.  We have a meeting of two winners in the battle against Bladder Cancer.  Can you guess who they are?  I will provide more details in a week or so...

Good News Across the Americas! - February 1, 2013

Had two of our "fraternity" members with cystoscopies scheduled for this week.  Good news of ALL CLEAR all around, and heartfelt thanks to God.  Join with me in celebrating stories from our brothers.

First up was Ben F. in Louisiana, whose procedures were on Thursday, January 31.  We shall have to change his name from "Mobile Biohazard Man" to "Hardcore Ben." Here is his report:

GREAT NEWS.....cysto yesterday was ALL CLEAR!! ......followed immediately by BCG. I never left the table. No need for biohazard stop along the way home. I think that this was my 20th BCG treatment.....
As you did, I moderated fluid intake a good bit and added Powerade Zero. Worked really good, was up only 2 times all night and feel great today. Also, took ibuprofen about 3 times, including this morning. Am now continuing to sip Powerade. Truly, God is great all the time and power of prayer is amazing..... This was my 24 month mark, so feeling real good about that milestone.... Am thinking about our brother, Sebastian, hope he has good news shortly. 

On Friday, February 1, Sebastian in Argentina had his cystoscopy.  He emailed me that an ultrasound and lab work earlier this week were good, so all that remained was the short agony of the cystoscopy today.  Because Sebastián is a writer, El Caligrafo, his message was very concise:

Dear friend
It's ALL CLEAR !!!!!!!!!!!!!!!!!!!!!!!!

I think we shall conclude that this is a week of good news.

Want to also mention for the record that Ed B. in Washington was also ALL CLEAR in early December, making it over 6 years for him!

God is indeed good, ALL THE TIME! 

I offer a virtual "high five"to my fraternity brothers! 

 

Maybe Someday - January 18, 2013

 Maybe someday is when I will get around to my next substantive blog posting.  I already know the topic - diet and urine alkalinity.  I have collected a lot of data and so far it's suggestive, but not conclusive.  Apparently other factors affect the acidity of urine in the bladder.  Trying to separate the signal from the noise.  Not succeeding.  At least we have had consistently good news from our "fraternity members" with no cancer detected for Brian S. in Atlanta on January 16, Steven S. in Tennessee on December 13 and Roy B. in Alabama on December 13. Next up is Ben F. (aka Mobile Biohazard Man) in Louisiana on January 31. 

One thing I can report right now is the original premise from John M. and Julie T. is fully validated. A teaspoon of baking soda in 4-8oz of water will turn your urine alkaline (regardless of diet) for up to 18 hours. While this works, it's a bit hard to swallow (literally), and I am unsure of the long-term effects of so much sodium intake. Better than bladder cancer, maybe!

In other news, I no longer resemble the fat dude in the Ferrari in the blog header photo above.  I have lost 40+ pounds and kept it off.  I'd like to lose 30-40 more, but not happening so far.  Less hair now, too.  Anybody want to lend me their Ferrari for a new photo?  (Undying thanks to the original car provider and photographer, New Age Guy!)

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

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

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

BCG Round 2 of 3 - Click to Enlarge

BCG Round 3 of 3 - Click to Enlarge

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

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

Click to Enlarge

BCG Maintenance Series 7 - First Round - 8 October 2012

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

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


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

Bladder Cancer Humor? - October 2, 2012

Bladder Cancer, as we all know, is not a laughing matter. But one must admit that the things we do to detect and cure it are completely ridiculous and defy description.  Professional comedian Mike Birbiglia had Bladder Cancer when he was in his late teens, and he retells the story with some probable embellishments here.  Props to Steven S. in Tennessee who found this.  Be advised there is no moving video, only a picture of his comedy album.  So enjoy the audio.



For the record, I never got any damn muffins!  What's up with that?

Judgment Day #11 on 9/11 - September 11, 2012

Probably most of you are remembering today (9/11) for another significant reason.  For me, it seemed an appropriate date to schedule my last cystoscopy for 2012.  I had a week's vacation and a weekend home to relax and prepare physically and mentally.  The 9AM appointment came all too soon.  The doctor was cheerful and chipper, came in and talked about adopting a new son from China last winter. He had originally planned to do it this month, but when they call, you have to go.  The boy has brought the family great joy, despite some medical issues.  So his vacation this year is quite ambitious - a hike over the Andes mountains in Peru to arrive in Machu Picchu.  He and his wife plan to spend several days and nights above 12,000 feet elevation, HIKING as high as 16,000 feet.  I cannot even imagine it.  

The procedure went quickly and the wonderful ALL CLEAR was welcome.  The doctor confirmed that we would do 3 BCG treatments in October, and then no scope (or PSA test) until September 2013!  This clear report now marks 52 months cancer-free, nearly 4.5 years.  Keep in mind that terms like "remission" don't apply to bladder cancer for at least 10 years, so not quite halfway there yet!

This makes for a happy day, and we will start making big plans for vacation, visiting friends, travel, and whatnot right away!  No more stunned period, waiting for the good news to sink in.  As soon as I feel better, perhaps I will try a happy dance.

Some details of the procedure follow, so those with weak constitutions may want to stop reading here...

There was some discomfort with the procedure this time, despite being able to use the very nice Storz video scope setup for the 3rd time in a row.  The doc started quickly, but I was ready - fully relaxed from deep breathing and hypnosis techniques.  No Xylocaine prep, and little if any lube used this time.  Frankly the whole ordeal (maybe 30 seconds) hurt like hell.  Even pointing my toes up and down alternately and focusing attention on the screen did not help.  I was able to stay relaxed and breathe through it.  Unsurprisingly my first urination at home (not counting voiding the saline solution at the office) showed a slight trace of blood (microhematuria), although the urine was nicely alkaline in pH.  It had been alkaline all of yesterday, so I think the stress was effectively managed.  For future scopes I plan to ask for the Xylocaine prep - even though it is messy, it helps a lot.  Not necessary for BCGs though!

Postmortem:  VERY severe symptoms (both razor blades and fire) began about 3 hours after the scope and remained with full pain levels unabated for 48 hours.  Began to ease a bit after that.

Final Postmortem:  Now pretty much back to normal FOUR full 24-hour days after the scope.  (still minor discomforts on Friday evening, at 3.5 days)

Motocyclene Therapy - September 10, 2012

I hang out with some interesting people on the internet and in real life.  One truly unique set is a group of motorcycle riders who like to ride long distances in the countryside, usually at very quick speeds.  In the universe of motorcycle riders, this sub-group is known as "Sport - Touring."  Few, if any, ride the infamous Harley-Davidsons, as that particular tool and technology is quite poorly suited to the mission. Most ride Honda, BMW, Suzuki, Yamaha, and Kawasaki motorcycles of various vintages and styles, matching personal preferences with budget, image, and other factors.  My group mostly started with Honda ST1100 bikes, and many have moved on to the newer technology of the Honda ST1300.  Others have migrated to other brands - some have had many choices, and others are still loyal to their first mount.  When people ask me what kind of bike I have, the answer "Honda ST1300" is generally uninformative, so then I tell them it's a cross between a Gold Wing (road sofa) and a crotch-rocket (bullet bike).  That description, plus a picture carried in my wallet, tends to convey the idea.

Several years ago one particular biker got carried away with typing an email update and misspelled the word "motorcycling" as "motorcyclene."  One cannot even blame the spell-checker for that mistake!  Even so, the word had traction, and has become a common term to describe the endorphin effect that occurs when riding for a while.  Others call it "clearing the cobwebs out of the brain" or other metaphors, but the term Motorcyclene Therapy is one that both resonates and works for me.

To help prepare for Judgment Day and otherwise restore balance to life, last week we rode about 1,500 miles, which is a pretty short trip for us.  They say that a picture is worth a thousand words.  If so, several thousand words follow:  (Click on any photo for a larger version)

More on Urine Testing - September 10, 2012

I have been back from my motorcycle vacation for a couple of days.  Great preparation for tomorrow's judgment day - riding with my wife and many great friends through the Colorado Rocky Mountains.  Great friends, scenery, food, and drink.  Extremely relaxing.  Began researching the urine tests and what passes for "normal" values for all 10 of the indicators.  If any of you are naturally curious about more than pH and blood, the following table should be quite useful:

More on Urine pH, Acidity, Alkilinity and Bladder Health - September 1, 2012

After publishing my last post, I received several emails from around the world.  Many are eager to begin monitoring their urine, and Sebastian in Argentina has noted microhematuria (microscopic blood in his urine) as well as acidic conditions.  He will be sending me his data to tabulate along with my own.  And Julie T. in Illinois had a story quite similar to John M's.  Her report in her own words follows:

From what I have read, cancer cells are anaerobic. They thrive in situations where there is little oxygen and lots of acid. Highly acidic food and stress are common culprits for causing a body to become acidic. The acidity in your blood has very little wiggle room, but the acidity level in your urine and saliva can vary greatly. I started testing my urine with the test strips and found that I was off the charts acidic (7 is neutral). I was at a 5.5 or below almost always. I used my husband as a control and made him test his urine also. We eat most of the same foods, and he eats a lot more unhealthy "junk food" (crap) than I do. His urine always showed a neutral to mildly alkaline reading (7-7.5) without doing a thing to control it. I started to drink baking soda & water every night before I went to bed (1 teaspoon to about 10 oz of water, equivalent to approx 1 gram per 300ml). I figured it would neutralize my urine and stay in my bladder overnight. I became somewhat obsessed with testing every time I urinated. It was amazing how the acidity level would fluctuate so dramatically during the day! I also started to notice that I could sense a "gritty" feeling in my bladder - the best way to describe it was like sand. If I would test when I had that feeling, I would find that my urine was very acidic. If I then drank the baking soda & water, the feeling would go away within 30 minutes.

I also started paying attention to diet and looked for trigger foods - things that I would eat that would correlate with acidic urine. Wine is something I love dearly, and wine would test acidic for me every time. I started drinking a baking soda chaser after each glass of wine to offset the "gritty" feeling and acidic condition. Foods that are typically acidic seemed to be the triggers, for example: cantaloupe. Sometimes I would need to drink 2 or 3 glasses of baking soda & water per day of to keep the urine pH level up to a 7 or higher. I have now learned to know what my acidic food triggers are, and if I am going to have them, I need to counteract their acidic effect with baking soda & water. I also drink 1 glass of baking soda & water at night, and I have become very attuned to feelings in my body. 

I also read the book Eat Right 4 Your Type - very insightful! I have Type O blood, and the book reports that people with type O blood tend to be more acidic then others. The book also pointed out foods that would react negatively with the antigens in the blood. Another interesting point was that people with O blood tend to not be overly affected by cancer. 

Like John M. I feel my spiritual life has been strengthened more than I ever thought possible. I have become very prayerful every day and can actually feel the love, support, and prayers other send my way. I know that God is watching out for me and giving me the strength I need to live every day. 

I have started seeing both Naturopath and Homeopathic doctors. Both work in tandem with one another. They have prescribed shots of mistletoe twice a week in my stomach, and I think they are working. The shots are the only thing that made my headaches from the BCG go away and eliminate my fever after a month. I have also started brewing and drinking a fermented drink called kombucha. It is supposed to put your body back in balance, and I have to say that I feel FANTASTIC! I have always been active, but never before like I am now. I also gave up coffee a few months ago and don't even miss it - or need it to get out of bed. 

I have three boys ages 14 ,11, & 5 - plus I work full time as a professor, so I need all the extra help and energy I can get! I finally feel like things are starting to get back in balance. Hopefully my November cysto will demonstrate that my bladder agrees!

I hope that you find Julie's story as compelling as I do, and that you will consider measuring and controlling your urine pH along with me.