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)
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)
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:
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.
Need to contact me? Use the photo-link near the bottom of this column.
Had an interesting annual checkup - no cysto, but ultrasound and blood/urine tests. Bottom line ALL CLEAR now 14 years and counting! God is good!
My parents were from a generation that feared seat belts. In May of 2013 they were both ejected from their vehicle (my father would have said "thrown clear") and did not survive. Automobile safety technology has dramatically improved since the 1950s and 1960s.
People, if you are traveling over 35mph, WEAR YOUR SEAT BELTS!
BLADDER CANCER ROLL CALL
Recent Results
2022
ME! - Steve K. in Bodrum, Türkiye ALL CLEAR on June 10. - 14 yrs
Wil S. in Chicago ALL CLEAR on March 22. - 15 months HK in Toronto ALL CLEAR on Feb 5. - 13+ years
2021
Steven S. in Tennessee ALL CLEAR on Oct 27. - 10 years Roy B. in Alabama ALL CLEAR on May 4. - 9 yrs Scott in South Carolina ALL CLEAR on April 20. - 6.5 yrs
2020
David F. in England ALL CLEAR on October 2 - 14.25 yrs and finished with cystos now!
2019
Julie M. in Illinois ALL CLEAR on June 15. - 8+ yrs
Roy B. in Alabama ALL CLEAR on June 24. - 8 yrs
2018
Ed B. in Washington ALL CLEAR January (but battling lung cancer now). - 9 yrs Bladder Cancer Free Patrick P. in LA area ALL Clear on November 28. - 9 years Sebastián in Argentina ALL CLEAR on October 9. - 5 yrs John B. in Minnesota ALL CLEAR on May 24. - 5 yrs Doug B. in Tennessee ALL CLEAR on April 7. - 3 yrs Ben F. In Louisiana ALL CLEAR on Feb 22. - 6 yrs
Need to contact me? Use the photo-link near the bottom of this column.
Short Summary of My Situation
On March 31, 2008 I was diagnosed with bladder cancer. As a non-smoker, at my age, with no family history of cancer on either side, I was quite surprised. The cancer was T1-G3 and Non-Invasive. It's not immediately life threatening, but my bladder is still at risk. I have been CANCER FREE via surgery for 14 years now, an important number - having exceeded both the two year ultra-high-risk and 10 year medium-risk recurrence periods. Less than 2% chance of the cancer returning now, not zero, so lifetime annual cystoscopies are in order. In addition I have completed 6 weekly treatments of initial BCG immunotherapy and nine 3-week maintenance rounds with moderately unpleasant side-effects. I have implemented radical dietary changes (limited pork, shellfish, sugar, ZERO artificial sweeteners (except stevia), processed flours, or chlorinated water), take several vitamins and supplements including the Budwig Flax Oil Cottage Cheese (FOCC) mix, resumed PectaSol-C MCP,and added regular light exercise.
Every year my doctor will visually inspect for new cancer growth via cystoscope, or a combination of ultrasound with blood and urine tests. While the probability of recurrence is not zero, the risk of disease progression is dramatically decreased now. The downside picture is merely a nuisance. Annual checkups for life. And any new cancer leads to another TURBT surgery to remove and analyze what's there. Probably nothing more beyond increased surveillance after that.
I have pursued an analytical approach to Complementary Therapies - those that can be done IN ADDITION TO what the doctors are doing. There are over 200 "unproven" approaches out there, and some work sometimes. I have conducted an objective, systems-based analysis many of them to determine which ones work under which conditions, looking for common, science-based threads. My current set of things I am doing is described in detail in this post.
All diagnosis, prognosis, and medical treatment recommendations have been validated with second opinions from a urologist in Indiana and Dr. Lamm in Arizona.
I am a great fan of life and doing something useful with the limited time we have on this earth. I enjoy my church, my home life, and my retirement.
My hobbies include extensive international travel, experiencing new cultures, and consuming fine food and wine (both at home and dining out).
On March 31, 2008, I received the very unwelcome news, "You've got bladder cancer!"
I was born in 1959, and I am a white, male, American. I married at age 24, and in October of 2008 we celebrated our 25th anniversary. We have no children, and that's OK with us. I had a vasectomy in 1999, so no changing minds on that decision - and the docs dismissed that early as any type of contributor to the situation.
I am six feet, zero inches, and was 255 pounds when all this started, but weight decreasing now thanks to surgeries and this wake-up call. I am NOT saying cancer comes from being overweight, but weight exacerbates all other problems. (Down to 240 pounds as of 9/1/08, down to 230 pounds as of 12/31/08, down to 220 as of 5/15/09, but back up to 230 and holding since...)
My blood pressure (checked and tracked weekly) runs a hair high - 130/90. Been steady at that level for many years. Been higher lately - stress will do that.
I don't smoke, and never have smoked anything, including marijuana. The docs had some problem believing me, as smoking is a strong indicator for bladder cancer. I tried asking if I should take it up now to break even, and they finally let it go. I find the whole idea of smoking distasteful, having suffered in a home where both parents favored unfiltered Pall Malls. The docs claim that secondhand smoke at home from birth through my high school years would not be a factor.
They also suggest that exposure to radiation and chemicals can cause this. I worked in a chem lab at college and there was stuff around; but my exposure was not that much and I never rubbed my groin on any of it!
I do enjoy an occasional alcoholic drink - usually a couple of glasses of wine with dinner or maybe a beer or two with pizza or during a televised sporting event. My use is less than daily and almost never more than two in any day.
I was diagnosed with gout in 2004. Gout is a crystallization of uric acid in the joints - primarily in the left big toe. These crystals cause irritation and inflammation - then BIG TIME PAIN. Gout supposedly comes from eating rich foods and poor circulation. I may also have a recessive gene for gluten sensitivity which may have contributed; but I have not as yet investigated this. I controlled the gout successfully for a while by super-hydrating (one gallon plus of fluids per day) but 4 international trips proved that I could not maintain or control this outside of home and an air-conditioned office. So in 2006 I began taking 75mg of allopurinol daily. This is also NOT a factor for bladder cancer. Subsequently I changed my diet and lifestyle and lost a lot of weight. Now I am not taking any medication for gout, nor have I had an episode in many years.
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