Last week was busy and stressful, and consequently the time passed quickly. Stress is building up from the countdown to the next cystoscopy, now less than 4 days away. On top of that my employer for the past 16 years, a Very Large American Aerospace Corporation (VLAAC) did a major restructure of our little piece last year. The plan was for my Utah group to be combined with two other groups in more than two other locations to form a New Medium-Sized Specialized Product-Oriented Organization (NMSSPOO) with headquarters and most staff here in Utah. We were proceeding down the path to plug in a new process infrastructure to support the new picture, when last week we got an email that aborted the new organizational structure and linkages, instead substituting a new, different, and completely unknown set of connections. So the way our NMSSPOO plugs into the VLAAC is completely different, and it appears our NMSSPOO is now a small part of a Large Specialized Product Oriented Organization (LSPOO). (Be advised that these terms and acronyms are my fabrications to protect the guilty, but they are not too far from the truth!) After a few days of research and running amok, we believe it could be that the new deal is better for us and could make life easier. But being a control freak (Myers-Briggs ISTJ) means that I intensely dislike chaos, disorder, and randomness. So while God is in control ultimately, I still fight for control of my environment locally. So here we have a double whammy - no control over the medical outcome, and my precious structural model at work blown away in favor of (hopefully temporary) chaos and uncertainty.
The situation called for some drastic action, so I did something I have not done since last August - and it was long overdue. I went for a motorcycle ride. Did about 100 miles yesterday (Saturday) and another 100 miles today. Sure it's January in Utah, but the sun is shining, the roads are (mostly) clear, and technology is our friend. It took over an hour to prepare the bike for the street - checking fluid levels and tire pressures, finding winter gear, wiring in electronics, warming things up. We live in the mountains, a few miles from the base of a ski resort, while most of the population lives down in the Bonneville lake bed on the other side of the mountains. I headed West towards the lowland and civilization, as it's generally several degrees warmer there, both summer and winter. What I forgot was the winter inversion. While it WAS a bit warmer, with temps ranging from 30 (degrees F) at home to 39 in the valley, there are climate conditions that trap windless air and hold it close to the ground. This air collects all dust, vehicle, and chimney pollutants and becomes noxious after a few days.
While yesterday's inversion was not the worst we've had, it made the Wasatch Front an unpleasant driving destination. Add to that the fact that people were out and about, plus every traffic enforcement cop was out and hard at work. I saw thirteen (yes 13) of them in the space of three hours, and about half of them were busy writing expensive citations. Thanks to experience and electronic countermeasures I was able to avoid meeting any of them in person. I made my way down the new Legacy Parkway and returned north via Redwood Road, where I saw several locals kicking tires at Salt Lake BMW, a well-known motorcycle dealership (sadly now out of business). Looped up to Ogden Municipal Airport and had a late snack at Doolittle's Deli. (Restaurant review HERE) Despite the weather, traffic, and enforcement, the concentration required to ride safely was a great aid in clearing my mind. Sadly, it only lasted about half an hour after I was done, so I resolved to go again the next day, but to head in the opposite direction!
So today I mounted up and headed East. While the air was clear and the roads were empty, it was a indeed colder - starting at 30 degrees and ranging down to 25 or so. I know this as the bike (a 2004 Honda ST1300) has an air temperature gauge built in. And because I had left my gloves, jacket, and helmet in the garage, they all started out at 30 degrees as well, giving me a thermal disadvantage from the get-go. Even with heated seat and heated grips cranked to full power, I was cold for the first 25 minutes, so I stopped to take a couple of photos and walked around a bit. This activity seemed to even out all the warmth, and the balance of the trip was quite comfortable, despite the colder temperatures. As you can see from the photos (click on any photo to enlarge), the sky was deep blue and nearly cloudless. Air was crystal clear, and the roads were empty. Motoring through the countryside revealed some spectacular photo opportunities with the late afternoon flat light of wintertime, and maintaining tight control of the vehicle in the environment was a solace to my spirit. I passed through the tiny towns of Croydon and Echo and made my way up Echo Canyon, where the red rocks were displayed beautifully in the cold sunlight. The roads were nearly empty of traffic, even on the Interstate. Looks like everybody stayed home to watch the NFL football playoffs. Today's winners go against each other on February 1 in the Super Bowl. That made it good for me. As I passed by Echo Reservoir, I observed a handful of ice fishermen busily fishing for ice. They stared long and hard at me, probably supposing that I was the bigger fool this day. I beg to differ, being the one with the heated seat, hand grips, and satellite radio in stereo coming through the helmet headset. Even with no ice or fish to show for my adventure, I would not trade my improved state of mind for either or both! The cold temperatures made it easier than usual to relax my pace, enjoy the scenery, and take a few photos. I doubt if I ran over 100 MPH more than a couple of times, although little clears the mind as well as air at arctic temperatures forced into your lungs at speed... I even paused long enough to note how the wind had carved the fallen snow into feathery ice crystals, pictured at the top of this post. As I made my way homeward the setting sun hit a rock formation to my right that I had passed dozens of times in the past without notice. These outcroppings with a lighter colored strata at the top looked for a moment like a gathering of blond giants standing around having an informal gab session. When I stopped to take the photo, the image melted into rocky reality, but still made the nice shot at right. All in all I am ready to work hard for the next few days, and all of you can join me in praying hard to wish for a positive outcome and more BCGs instead of more surgery. Even cancer looks better after a great motorcycle ride!
Hi Steve, what a beautiful part of the world you live in and a lovely blog too - I enjoyed that. I can sympathise with you on the work front. At the time I was going through your stage I was made redundant and later the next job was even worse so it all adds to the stress and for you and me (INTJ / ISTJ) it is worse of course.
I was surprised to see Croydon mentioned as we have a Croydon, not far from me, about 15 miles I suppose. It is massive and is on the South London / Surrey borders. It has a massive shopping centre (well by UK standards). Nothin like the small place you descibe :-) http://www.croydononline.org/visiting_croydon/
I'm praying and pulling for you for 21st and 22nd and I'd be massively disappointed for you if you didn't get the right answer given that you have done everything (and more) your team need for you to get healthy.
It is a difficult couple of days ahead and you have lots to bounce around in your mind. In a way, you have to prepare for the worst and hope for the best. That's worked for me as if it is bad news, I was expecting it, everything else is a bonus and a lift.
We will have to compare notes on the 22nd - wishing you well for your meeting and keep with the breathing techniques and other ways to keep yourself as calm as you can.
I pray for a good result for you. I had my own cysto on Friday and am now heading for my second Turb and the mitomycin c instillation I didn't get the first time. The doc saw a spot and since I had a huge (racquetball size) tumor and my bladder was perforated when the took it out, I wasn't able to get the Mi-C. It's been six months since my first Turb and I was beginning to feel like I might get out of this real good, but now its back to the grind....Probably some BCG in my future too.
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.
2 comments:
Hi Steve, what a beautiful part of the world you live in and a lovely blog too - I enjoyed that. I can sympathise with you on the work front. At the time I was going through your stage I was made redundant and later the next job was even worse so it all adds to the stress and for you and me (INTJ / ISTJ) it is worse of course.
I was surprised to see Croydon mentioned as we have a Croydon, not far from me, about 15 miles I suppose. It is massive and is on the South London / Surrey borders. It has a massive shopping centre (well by UK standards). Nothin like the small place you descibe :-) http://www.croydononline.org/visiting_croydon/
I'm praying and pulling for you for 21st and 22nd and I'd be massively disappointed for you if you didn't get the right answer given that you have done everything (and more) your team need for you to get healthy.
It is a difficult couple of days ahead and you have lots to bounce around in your mind. In a way, you have to prepare for the worst and hope for the best. That's worked for me as if it is bad news, I was expecting it, everything else is a bonus and a lift.
We will have to compare notes on the 22nd - wishing you well for your meeting and keep with the breathing techniques and other ways to keep yourself as calm as you can.
I pray for a good result for you. I had my own cysto on Friday and am now heading for my second Turb and the mitomycin c instillation I didn't get the first time. The doc saw a spot and since I had a huge (racquetball size) tumor and my bladder was perforated when the took it out, I wasn't able to get the Mi-C. It's been six months since my first Turb and I was beginning to feel like I might get out of this real good, but now its back to the grind....Probably some BCG in my future too.
Reader in Michigan
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