14 Years Cancer Free - New Procedures - June 25, 2022

New country, new doctor, new protocol, new (to me) procedures, same old VERY GOOD result - ALL CLEAR now 14 years and counting!  This all happened a couple of weeks ago, and the process was unusual and anticlimactic and did not really feel "real" at the time. But now it does, and I'm pleased to have something unusual to report.

From my last post you will have learned that we decided to retire and have now relocated permanently to Bodrum, Türkiye. That makes chasing Dr. Hopkins (who has moved back to Salt Lake City from Oregon) a bit more expensive and troublesome. Medical and dental care in Türkiye are world class. It is the number one international medical tourism for male hair implants, top 5 for elective cosmetic surgeries, and top 10 for dentistry - the latter being very popular for folks from the UK, who vacation here often. We live in the cosmopolitan area of Bodrum with an enormous summer tourist presence and a very strong year-round international presence, so the demand for excellent healthcare (and other consumer items) is supplied in surplus by enterprising Turkish and international businesses. 

The best all-round healthcare center in the area is Acibadem (pronounced Ah Jee BAH dem).  It is a combination hospital and medical center about 25 minutes from our villa. We had visited there last year for a nuisance inner ear problem my wife had and were treated very well. Based on that and some communication with a couple of Turkish urologists in other cities, I decided to just go for it and schedule an exam and cysto. Of course you can only schedule the exam - the doctor decides about ordering the cystoscopy.  So in I went on Friday afternoon. I was met in the lobby by Becky, the head of international patient relations, who escorted me to Urology, translated for me to the check-in personnel, and then 30 seconds later we were ushered to the doctor's private office.  Becky introduced me to Dr. Mirze Bayandir, and explained that he could read and understand written English, but not conversations, and she remained with us throughout to translate both ways.

I should mention in passing that the facility here is an architectural marvel - stunning, open, airy, and radiating an air of cleanliness, modernity, and professionalism that ALMOST convinces you that you aren't in a medical facility. While we thankfully have not had the occasion to see for ourselves, we've been told the hospital rooms resemble Ritz-Carlton rooms much more than they look like American hospital rooms. Based on the exterior and interior spaces I have seen, I tend to believe it.

Dr. Mirze (in Turkey the docs go by first names) was very interested in the history and documentation I had brought with me, all in English. We started with the date of diagnosis and staging, and he expressed deep concern at the grade of my cancer (T1G3).  He asked about follow-up BCG, and I told him first about the Mytomycin chemo-bake following my second TURBT, which he understood. Then I gave him a copy of my spreadsheet that showed every exam, DRE, CT-Scan, and BCG series for the past 13 years. He asked several questions about BCG and was surprised that I had consulted with Dr. Lamm himself.  I also gave him the summary of my CT scan last year, 10 years of blood work history, and some recent weight and blood pressure data. He was pleased to have all of it, and even more pleased that I had made copies he could keep.  He asked (via Becky) if my PSA values were Total PSA or Free PSA, and was surprised they were Total.  I added they are low, and he agreed VERY low. After perusing everything in depth, he said something very excitedly to Becky and showed her a paperback large-format book, all in Turkish.  Becky explained, "Dr. Mirze is extremely impressed with the history and level of care your case has been given. He described it as extraordinary, and he also wanted you to know that he is both and expert and advocate of maintenance BCG. The book he showed us was his Doctoral thesis on BCG treatments."  I mentioned also the Mytomycin bake, and he agreed, saying it was his standard protocol.  

Becky went on to explain that in Türkiye, after 10 years cancer free, the standard of care for bladder cancer is not cystoscopy, but rather urine cytology, blood tests (including PSA), and ultrasound of the bladder and kidneys. But he would gladly do a cysto if I wanted.  Since I had been conditioned to annual cysto for life, I felt like I should, so he scheduled it for Monday morning, ordered urine and blood tests,  Then behind a curtain for a quick physical poke around, after which we all went to a side room for the ultrasound.  It was just like a pre-natal ultrasound, with messy goop on each kidney and over the bladder, the doc pressing the ultrasound probe and moving it around, all while looking at a big screen with nothing evident to me except blobs in shades of black, grey, and white.  The doc asked a question which Becky translated, "Have you ever had prostate surgery?" and seemed surprised (and disbelieving) my NO answer.  He remarked that my prostate was extremely small for someone of my age.  I told him I was happy to have that situation. Finally the doc told Becky he saw nothing on the ultrasounds, and if blood and urine tests were clear, I was good to go.  But no harm in doing cysto on Monday. 

Cooler than Sickbay on Starship Enterprise!

Becky and I went back to the Urology check-in and she asked them to prepare my bill. The good news is that we are now permanent residents of Türkiye, and therefore entitled to a substantial discount - last year we were "tourists" and paid full retail - still well below USA pricing.  Becky had told me in advance that the doctor's exam (including ultrasound) would be US$55, and I was a bit surprised that the labs were US$140 more - still the total bill was under $200 with no insurance at all. The only downside was that Acibadem's payment processor detected my foreign credit card and auto-converted the bill to US$ at a very poor rate, adding about 12% to the bill, while my credit company would have converted at spot rate with no fees if they had just charged in local currency.  Lesson learned - next time I will put the cash in the bank and use a Turkish card at Acibadem.  Lastly I asked Becky to check on the cost of the cystoscopy, and she said she would give me a call after checking.  

Then she sent me on my own to the lab to have blood drawn and urine collected, which went very smoothly, after which I was free to go, and so I departed to my car. On the drive back home Becky did call and told me the cysto would cost just over US$3000.  Shocked, I told her to cancel it. She was surprised and asked how much it was in the US. I explained that it was probably more, but that after insurance I paid around US$1000.  She said she would double check with the doctor.  A few minutes later she called to let me know that the $3k price was given to her by the admin department for a full operating room, general anesthesia, an anesthesiologist, surgical intern, both hard and flexible cystoscopy, and ability to do biopsies.  But as the doc told her I needed only a flexible scope, most of that did not apply - but it would still be done in the surgical theater, and the real price would be around US$1300.

By this time I had already decided the doc's exam was good enough, and I was cancer free, and so spending as much as I would in the US or more seemed like a waste of vacationing money. And let's face it - once you decide NOT to do a scope, it's really hard to reverse that decision. I told her to cancel anyway and thanked he for her help. She was quite surprised, but accepted my decision.  If the price had come in at the $300-$600 I had expected, I probably would have done it. But now I think I can accept going to every second year for cysto, and that gives me time to see if alternative providers can do cystos in the office rather than in a surgical theater, perhaps bringing the cost way down.  

Upon arriving home, I was a bit surprised to see my blood work and urine cytology reports, along with the doctor's full report, were live online for me to see and download - all in English. And the urine culture results arrived 24 hours later. All results were negative or within limits, and PSA still below 1.0.  Good news all around. But the bottom line is my logic told me all was good and I am Cancer Free, but not having the experience of SEEING it real-time in living color on a big TV made the entire thing anticlimactic. Now 2 weeks later it feels more real, and I guess I can live without the excitement. Life is good, God is good, and I am super happy with this year's adventure.

Changes in Longitudes - Changes in Attitudes - BIG NEWS! - June 16, 2022

The title is a poor rhyme, but apologies nevertheless to Jimmy Buffet. I mentioned in the sidebar last year that BIG changes were coming, and they have come.  I am a few months late in this update - bottom line: LIFE IS GOOD!  In 2019 we decided to shut down our retirement business and actually retire.  We had been exploring all over North America and even some in South America, and we finally found a place that really spoke to us and seemed pleasant and affordable.  We took some initial steps to shut down the business and many steps towards getting my parents' house (inherited by my brother and me) ready to sell.

Then Covid.

After 18 months of limping the biz along and sitting indolently at home and gaining way too much weight, we decided enough was enough.  The country we had selected in 2019 was still covid-crazy and completely locked down.  It was the nicest place we had ever visited together.  BUT... the nicest place I had ever been on my own was open and inviting.  So we decided to go for a visit.  On paper, it was equal or better than the other place, but the culture would be VERY much more alien to us.  I figured I could handle it, but my wife had never experienced the place, the people, the food, or the culture.  

So last July we drove from the house in Oklahoma to Chicago in order to catch a non-stop flight.  Why?  Because of absolutely insane covid rules in the hubs used by American-based airlines in Amsterdam, Paris, and Frankfurt - just to pass thru and change planes.  They each had their own unique tests, most of which you could not do in advance, and they would then imprison you at your own expense if you failed their on-the-spot favorite weird tests. Fuck that.

Anyhow, we had no issue boarding a nonstop flight for Istanbul, Türkiye in Chicago and had a reasonably pleasant trip in the very back rows of a 777.  Upon arriving in Istanbul we found the city oddly deserted - a big Eid holiday was on, and everyone had fled to the beaches and countryside.  Had a couple of issues with credit cards and ATMs (easily corrected with the help of friendly Turks in subsequent days), and we were able to board an express bus from the airport to the uber-cool Kadiköy Moda district on the Asian side of the Bosphorus-divided city.  Very strict 2 hour-limited naps in the hotel and we were fresh and ready to go explore Moda and try the food, language, etc. It was super-awesome. And so we continued for several more days, seeing the sites and the city at its uncrowded best.

By the end of the second day, my wife had fallen in love with the country. So at the end of the week we grabbed a cheap and easy domestic flight to the area reputed to have the VERY best weather in the country - the Bodrum peninsula, which is home to the very eclectic and well-served city of Bodrum plus a seafront periphery of old Turkish villages now chockablock with gorgeous sea-view and mountain-view flats and villa developments.  With the help of an English-speaking fixer, we explored the city, the peninsula, and beyond, searching for that perfect combo of sea view, spaciousness, modernity, convenience, and weather.  Many realtors told us it was impossible.  They were incorrect. On August 11th we bought a gorgeous 2-bedroom villa with stunning views, taking possession fully on August 31.  It needed a bit of expansion and renovation, so we took a 2 week driving vacation around the country while that happened. We visited Kuşadasi, Ephesus, Pamukkale (Laodicia),  Isparta, Konya (Iconium), Cappadocia, Antalya, Kas, Fethiye (Patara), and Mügla. Epic and shockingly affordable.

We stayed thru early November getting the house furnished and in a semblance of cleanliness and order, then returned to the US for the winter to gather our things, close out our affairs, sell our many vehicles, and leave our homeland behind us. It was hard, but we got it done, and ended up boarding our snow-delayed flight to Türkiye with 20 pieces of luggage, arriving back home in Türkiye on January 31, where we have been since and will be for the foreseeable future.

Why are we here? Same reason anybody retires where they do. Great weather, great food, decent wine, good people, outstanding health care, fun activities all around, tremendous travel opportunities, and most important of all it gives us a MUCH better lifestyle than we had for less than 40% of what it cost us to live in the remote, rural US. The culture and language are a challenge for us, but the welcoming and helpful attitude of the locals makes life easy and gets problems solved. We came here because we love it. We are NOT running away from anything or any place. And check out the view from my office - how much would THAT cost in the USA?!?!

Most ironic thing, we are at essentially the same latitude as the Oklahoma place, and also the same as Gilroy, California where we lived for 15+ years. So only longitude has changed - hence the post title. Weather here is much more like California, though!

Most odd thing I have noted consistently is that hard things are easy and easy things are hard. It's a difference in cultural bureaucracy. For instance, want to add a room to your house?  No problem, it can start on Monday and be done in 10 days.  Want to pay tax on your US cell phone so it can be used in the country? Spend an entire day standing in different lines being sent to different places and then finally pay a guy at a shady cell store to pay the tax for you and connect your IMEIs in the government online system, only to have one phone's payment method (that worked fine for the other phone) consistently rejected, so come back to the cell place every hour to see if they figured it out, which they finally did through some crazy roundabout way, and then pay them the tax plus their very reasonable fees.  And we find out in about 10 days if it worked or if one or both IMEIs get blocked from the network. Crazy!

We are taking the hard easy things as adventures, as puzzles to be solved, and seizing the joy when we finally conquer the byzantine ottoman bureaucracy. Like with cancer, Attitude is EVERYTHING. And God is Good, ALL the time!

Judgment Day 2021: NOW 13 Lucky Years CANCER FREE! - May 5, 2021

As many of you know, I was forced to skip my Cysto last year due to COVID-induced flight cancellation.  This year is much the same, so we drove over 2000 miles to chase down Dr. Hopkins and got the job done this year. Today is Wednesday, and we arrived in Medford, Oregon two days ago.  Monday (arrival day) saw blood work done.  The Asante Medical Group is very efficient, and a couple hours later the results were online - routinely, boringly normal.  Good start!

Then on Tuesday I had a CT Urogram, and again the results were available in a couple of hours.  Not so good - the Radiologist was extremely thorough, and noted some benign cysts in the lining of one lung, some more and likely benign small cysts on the liver, some deposits from coronary artery disease, and something called hepatic steatosis or "fatty liver disease."  All of these are somewhat normal for US citizens over 60, and verified to me that I am only a few days away from turning 62.  The fatty liver is partly a result of 15 months of weight gain and near-total inactivity thanks to fucking COVID.

Buried in the details of the results was a single statement about my bladder: "Urinary bladder is grossly remarkable."  What this SHOULD have said, and always had said in the past was: "grossly UNremarkable."  This change caused quite a bit of consternation.  I freaked out for a while, then took a 2 hour nap to calm down, and finally called Dr. Chuck (a good friend from college), and read him the entire CT report. He calmly reported that it was clearly a typo - nobody would bury anything important and refer to it only once. They might talk around it, but anything of concern would be mentioned two or three times at least.  This reassurance helped A LOT and I was able to get a peaceful night's sleep.

Medford, Oregon is beautiful and completely locked down due to COVID.  Restaurants had been allowing up to 25% capacity dining, but the Friday before our arrival the governor of the state decided that so much freedom must be squelched and, citing rising cases, shut down restaurants again. I learned that Asante Group's 3 hospitals had only 40 COVID cases between them with about 20 in ICU, far below their capacity - these places are HUGE. But no matter, we did carry out or dined on the sidewalks outside of places and had a good time anyway.

Today was yet another picture perfect weather day (we are well ahead of fire season and summer smoke), and we headed to our 9:15 appointment just before 9AM.  Checkin was fast, and we were almost immediately called inside.  Quick vital signs and a short wait for the exam room, then numbing Xylocaine applied to the entry area and clamped.  After maybe 5 minutes Dr. Hopkins appeared, very happy to see us again.  He shared some family news, mostly good and some tragic, and we exchanged pleasantries before getting down to business with High Def cysto and super-fast DRE.  He saw nothing, and had not noticed the supposed typo in the CT report. When we called his attention to it, he also dismissed it as an error. And to his credit, he immediately pulled up the actual X-rays on screen and double checked - nothing at all in the bladder, verified of course by his visual inspection via cysto. Officially ALL CLEAR! 

Photo below is stock photo of cystoscopy - it is NOT me and not Dr. Hopkins, but fairly represents the procedure.

This is NOT me and NOT Dr. Hopkins!

We discussed BCG, as my final scheduled maintenance series had been planned for 2020. He pointed out that I was doing exceptionally well, and that BCG supplies were very limited, so they were not doing maintenance BCG at all this year. He said we could declare BCG maintenance officially complete, and I was eager to concur.  Good news all around.  

We returned to our stunning AirBnB apartment for some celebratory wine and another nap for me - I can only pretend there was zero stress. After the wine I needed about an hour of good REM to recover from the ordeal of the buildup to the morning.  Now rested, refreshed, and jubilant - I am happy to announce I am officially 13 years CANCER FREE.

God is Good - All the Time! 

Bladder Cancer, BCG, and COVID-19 - Potentially Good News! - April 15, 2020

Is it possible that BCG treatments that we get to combat bladder cancer could help us to stave off or survive the Coronavirus?  The short answer is maybe so, but NOT for the reasons being reported in mainstream media.

The long answer of why that good news may be true follows:

BCG is a Tuberculosis (TB) vaccine that is made from deactivated (dead) bovine TB cells.  It is administered via skin prick in low income, high population, and poor health countries such as India.  This skin prick is just like the old Smallpox vaccines many of us got in our shoulder as children here in the USA.  The effectiveness of BCG against TB is for adults and is widely variable, based on which strain is used, but consistently low (Zero percent in southern India).  Again this is for ADULTS.  For small children it is much more effective against TB, but the effect generally disappears during adolescence. As for BCG helping with other infectious diseases, there is some good data to support effectiveness against Leprosy, but not really for anything else.  Keep in mind that both TB and Leprosy are caused by bacteria, which we also call "germs" or "cooties" and are living organisms like the amoebas and parameciums we saw under the microscope in grade school.  TB and Leprosy belong to a specific subset of bacteria called mycobacteria, which means they are slow-growing, Gram-positive, catalase positive, non-motile, non-spore forming, rod-shaped bacteria (0.2–0.6 μm wide and 1.0–10 μm long). 

Being bacteria is an important distinction from the Wuhan Virus, aka Corona Virus or now officially the SARS-CoV-2 Virus which causes the disease called COVID-19.  A virus is an entirely different animal from a bacterium, and technically not an "animal" at all.  A bacterium is a single-celled living organism that can survive and reproduce on its own, while a virus is not technically "alive" at all.  Viruses are simply a single piece of genetic material (DNA or RNA) inside a protein shell called a capsid.  They cannot stay active or reproduce without a host cell.  Viruses propagate and "survive" by hijacking host cells and using them to make new viral proteins. Viruses are pure evil - almost all of them cause disease, while most bacteria are beneficial for health or ecosystems with less than 1% causing disease.  Many bacteria can be killed with antibiotics, which do nothing at all to viruses.

Both viruses and bacteria can be controlled with vaccines, which operate quite differently from antibiotics or other drugs.  But the vaccines tend to be very specific to each disease.  In short they introduce something to your body that is similar to the actual disease virus, but (hopefully) different enough to not cause the disease, or cause illness less severe than the targeted disease. This is why some people get sick after getting flu shots, for instance, the assumption being that that illness is less severe than actual influenza.  The vaccines do not attack the disease directly.  How could they, since they are almost universally administered to people who don't have the disease in the first place?  Instead the body reacts to the vaccine, identifying it as something bad, and marshaling your natural defenses to stop it.  Contrary to popular opinion, all the detailed natural responses your body has to disease or toxins are not known or fully understood. But we do have an idea that vaccines help your body to identify them as bad actors, and your immune system develops "antibodies" that effectively stop them.  The designs of those specific antibodies go into your immune system's "memory database," so that  if the real disease shows up, they system determines it has seen these before, then it dials up, generates, and deploys the appropriate antibodies to stop the real disease.

What the mainstream media are reporting, and it all seems to be repeats of a single story that they are all parroting almost verbatim, is that maybe this 100 year old vaccine may be the magic cure to stop the SARS-CoV-2 virus.  The data show very broad based statistics from national health organizations from lesser developed countries that use BCG skin prick vaccines, mostly at birth, and all of that data comes with suspect reliability and consistency.  Laying that iffy data against data from the World Health Organization (WHO) compares rates of infection and rates of BCG vaccination.  These very unreliable data show a POTENTIAL correlation between high BCG vaccine rates and low infection rates.  These data come from disparate sources of wildly variable reliability, and most from areas with low GDP and very low levels of testing, so even the statistical inference of correlation can only spawn new testing of the correlation using controlled data collection. Unsurprisingly, several of those new studies have been initiated.

And we all KNOW (but often forget) that correlation and causation are different and not necessarily linked.  For instance there is a very high statistical correlation between people that have committed murders and consumption of ground beef in the previous 72 hours.  Does this mean that vegetarians are all peaceful and hamburger-eaters are all poised to kill?  Of course not!  So there is a lot of work to be done to see if BCG can be used or modified to fight SARS-CoV2. And keep in mind that the BCG treatments for bladder cancer are NOT the same as these vaccinations.

A reasonably neutral summary of what has been reported and what it really means can be found in this YouTube video:

By now you are wondering, where is the good news?  There actually is some.  As Bladder Cancer survivors, most of us have received 3 or more BCG treatments, but almost NONE of us have had BCG vaccines via skin prick.  Our Bladder Cancer BCG treatments are NOT vaccines, but are Immunotherapy treatments.  As I have discussed in previous blogs, there is no agreement about how Bladder Cancer propagates - some believe the bladder is defective and genetically will produce or allow production of cancerous cells, while others (like me) believe the cancer forms from external stimuli (diet, toxins in the environment, etc.) and propagates by "seeding" from the original site.  Therefore, because there is no agreement on how Bladder Cancer actually works, there is no full understanding about how BCG might really work.  But all immunotherapies work somewhat like vaccines.  In our case the BCG tricks your body into thinking something is VERY wrong with your bladder, and therefore stimulates your immune system to send in "all the troops" (which are not fully understood) to fight the supposed infection. This is why we get "flu-like" symptoms after BCG treatments.

Based on your point of view about Bladder Cancer, you either think the immunotherapy OVER TIME "trains" your bladder to stop making cancer cells, or "trains" your immune system to stop allowing Bladder Cancer seeds to propagate into tumors.  How it happens is, of course, less important than the fact that SOMETHING does happen and the correlation and causation have been proved over time to be statistically significant.

So what does that mean for us?  Since our immune systems have been tricked into responding with antibodies (and T cells, and NK "killer" cells, and various types of white blood cells, and other both known and unknown things) to react to BCG's trickery, it is certainly possible that our immune systems are in general stronger than before, with quicker and more specific reactions, and therefore more effective than the average person's.  I can personally share with you that I have had only 4-5 colds in the past 10+ years, and only one was severe enough to require bedrest (and only lasted 2-3 days).  And nothing else.  In general I cannot tell the difference between catching a cold and having a couple of bad allergy days.  So it seems to me that my immune system's reaction time and effectiveness is on hyperdrive.  Which is cool, and potentially life-saving these days. 

The benefit that most of us will receive from our BCG immunotherapy treatments is something called "non-specific immune-boosting effects," which is a science-y way to say that our immune systems are complex and not fully understood, and many of the things "learned" by immune systems are able to fight things other than the ones originally targeted.  This is the good news - the tiredness, general malaise, and other flu-like symptoms produced by BCG immunotherapy will not only help our bodies to fight bladder cancer, but also to fight other things.

A final few words on just how bad this pandemic might be:

This is my rational and data-based take on the current pandemic faced globally with SARS-CoV-2 and COVID19.  What has been reported so far is statistically over-biased towards higher than actual mortality rates.  This bias happens because the people who are being tested for the disease is a MUCH smaller number than those who actually have (or had) COVID19.  This low level of testing is both reasonable and necessary because of the limited number of test kits.  Those being tested are those with the strongest reactions, worst symptoms, many of whom may otherwise be in the higher risk groups.  SARS stands for Severe Acute Respiratory Syndrome, and anyone with any type of lung impairment (even mild asthma) is more at risk than an average person.  What that boils down to is that the high fatality rates (widely reported at over 5% and even as high as 20%) are primarily a mathematical function of the denominator of the fraction being understated.  It works like this:

Mortality rate  =  Number of deaths (for any reason) of COVID19 infected persons
                                     Number of confirmed cases (by testing)

Simple math tells us that this fraction will be a lower number when the bottom number (denominator) is higher than the top number (numerator).  If a lot of people that have COVID-19 are not tested due to a lack of test kits, they are not counted and the bottom number (denominator) is smaller than it should be.  Most honest news sources have calmed down a bit and are reporting mortality rates at around 2%.  This is still hugely bad - with regular influenza's mortality rate being well known at 0.1% (a tenth of a percent), that means COVID-19 is about 20 times worse as far as risk of dying.

Here's the problem - that 2% is probably grossly overstated, by a LOT.  I have a real-life example, first person, directly from a someone I know and reported to me, whose entire office was exposed and infected  This is first hand information, from the source, not secondhand from "a guy my cousin knows" or whatever.  His office has only 26 people, so it is not statistically significant in any way, but it can be indicative of how even the 2% mortality rate should be viewed with some realistic skepticism.

Of the total population of that office, only 1 person was tested (5%).  That person was admitted to the hospital for 2 days for observation and represents ONE confirmed case in the statistics.  Nobody else in the office was tested, and therefore were NOT confirmed cases.  Instead they were told, after an analysis of their work space, habits, and proximity, that there was a nearly 100% chance they were exposed and almost equally high chance they were infected.  And they should ALL assume they WERE infected and simply go home for and self quarantine for 14 days, and otherwise do nothing unless their symptoms required a trip to the Emergency Room.

Using slightly rounded numbers, of that office population (100%)

  • 95-100% actually infected (this 5% range presumes one person might have been exposed and not infected, which is quite unlikely)
  • 15% had significant symptoms (3.5 days chest pain/cough + 3.5 days difficulty breathing)
  • 55% had mild symptoms (4-5 days extreme fatigue - hard to stay awake all day)
  • 25-30% had NO SYMPTOMS at all  (this 5% range presumes one person might have been exposed and not infected, which is quite unlikely)
  • 0% mortality in this small (not statistically significant) sample

Here's the thing - BEFORE they were aware by testing that they had been exposed, it has been estimated that they unknowingly exposed an ADDITIONAL 91 persons, an unknown number of which may have been tested or died.  Here's where the math gets interesting.  For only ONE confirmed and tested case, there were another 24-25 definite cases which are NOT reported in the stats as confirmed (by testing), plus up to ANOTHER 90+ probable cases, an unknown number of which ever became "confirmed."  This puts the margin of error at somewhere between 20 times and 110 times as many actual COVID-19 cases versus the number reported as confirmed (and tested).

If we go VERY conservative, and suggest that it's only 10 times as many (rather than 25-110 times), that puts the mortality rate at 0.2% or twice as bad as regular flu.  I am NOT trying to trivialize this, because the SARS-CoV-2 virus is stronger and therefore more survivable outside the host than regular flu - meaning you can get infected from a metal surface, for example, up to 2 days after it's contaminated.  COVID-19 is therefore MUCH more contagious and infectious, and certainly MUCH more perilous to anyone with compromised lung function.  So the numbers of deaths could certainly get much higher than regular flu, simply because a lot more people will likely get COVID-19 than would ever get regular flu, and the mortality rate is perhaps twice as high as regular flu (though likely less than that).

What I am trying to do is offer encouragement to those who have received BCG (or any other) immunotherapy treatments.  Your chances of being in the 85% with mild symptoms or no symptoms may well be larger than 85% simply because your immune response is faster and more effective than average.  And that is pretty good news indeed.

What Am I Doing NOW to Fight Bladder Cancer? - 2020 Blog Update - April 12, 2020 UPDATED May 2021

UPDATE! See UPDATE flag below for latest info!

It was definitely not my plan to update this blog only once per year.  But it certainly seems to be progressing in that direction.  For the record I will update the blog at least annually, reporting the story of my checkups.  Beyond that, only something that will be useful and interesting to you all.  And now that the blog is old, I found that tons of the educational and entertaining links were broken.  So I spent a LOT of time going through all the old blog posts, updating or eliminating links, re-hosting the backpage links, and generally fixing things.  For those who want to read from the beginning, it should work a lot better now.

One thing that has been requested more than once by readers of the blog is a list of things that I am doing NOW to keep the cancer at bay.  I will admit that picking through the blog to figure out what to do is tedious.  What I recommend NOW and am doing NOW is summarized in this post, updated since originally published in 2014: https://gotbladdercancer.blogspot.com/2014/12/updated-post-dealing-with-any-type-of.html

Basically you have to decide NOT to die from cancer, then you need to create a cancer-hostile environment in your body.  The most important way to do this is outlined in the post above.  There are other things that can be done, and what you choose (or what I choose) are more a matter of personal tolerance than necessity.  And there are tons of things I never tried that may also help.  But here's the bottom line: Decide not to let cancer kill you, do what your doc recommends to attack it directly, remove cancer triggers from your lifestyle, and take steps to make your body unattractive to cancer in the future.  

In 2009 I developed a complex logic diagram that supported things you can do to actively fight cancer, and pretty much nobody understood it.  In the most recent update I completely re-vamped that diagram, simplified it, and (hopefully) explained it better. Here is where I give the details of the 10 things I still do, exactly what and how often.  It lists 11, but #1 was surgery and BCG that the doctor does - the other 10 are things that I do.

You can read the updated and UPDATED post here: https://gotbladdercancer.blogspot.com/2009/10/dealing-with-any-type-of-cancer-what-to.html 

Here is really where I am right now: LIFE IS GOOD

And life is for living. Don't postpone things until later, when you have the time, the money, the logistics figured, or whatever.  Make every effort to do them NOW.  Having recently turned 60 years of age, I now know a lot of folks who put off doing everything they loved until retirement, then there was no time left (or worse, no energy or health) to go do them.  Get out there and do good things NOW!

11 Years Cancer-Free! - July 8, 2019

We will begin with the bottom line.  Cystoscopy complete, now 11 years cancer-free! Now for the details...  I discovered last year that my doc had relocated from Salt Lake City to Medford, Oregon, and elected to hunt him down and have my annual exam, albeit a couple months late, as described in the previous post.

My lifestyle for the past 5 years has been itinerant by choice, wintering over and doing holiday/family stuff in Oklahoma, then traveling full-time across the USA the rest of the year.  We have been to a lot of interesting places and met some fascinating people during that time.  And this year was to be no different.  Our plans were to start off in central Minnesota to handle routine doctor appointments, then off to Calgary, Alberta for a motorcycle rally.  Then plans to swing West to Seattle and Yakima to visit friends and drink wine, then south to Oregon for the annual cystoscopy, then on to northern Nevada and Salt Lake and then Colorado, spending a week or more at each place visiting old friends and making new ones. But while in Minnesota the economic realities of such a trip sunk in, and we elected to eliminate the western loop.  We did the bike rally in Calgary, then headed directly to Colorado for the month of July.  I opted to fly solo to Medford on Sunday, July 7 for my appointment the morning of July 8th, returning to Colorado that afternoon.

And so it went.  90 minute drive down the mountain from Glen Haven to the Denver airport, uneventful flight to Medford, and a late night dinner at In-N-Out Burger in Medford.  I got my usual Double-Double with grilled onions along with Animal Fries (from the secret menu) and iced tea.  After spending so much time in the west, that meal felt like a homecoming for me.  Hotel was pleasant and staff were awesome.  I slept really well, not having time or inclination to dwell on the upcoming procedure.  I note this is a big change from the early years, where sleep patterns would be disrupted for about a week in advance, and regular deep breathing exercises and relaxation techniques were mandatory.  But not this year.

Instead I awoke to a stunningly beautiful Oregon day.  Thankfully no forest fires were nearby to disturb the air quality, and the views in every direction were spectacular.  I keyed the doctor's office address into my phone's Google maps and set off.  While the office was not far, Medford is a bedroom community with few 4 lane roads, so the 5 mile journey took about 15-20 minutes.  With the weather so nice I drove the entire way with the windows down and the tunes cranked up loud (by my standards, anyway)!

Got to the office to find construction on the street and a flagger directing folks both in and out of the exit to the parking area.  Nabbed a good parking place, grabbed my records and stress ball. and headed into the office.  Having been there once before, processing-in took 10 seconds or less.  I was a bit surprised, having been forced to fill out the exact same forms every year in Oklahoma and Minnesota, and I appreciated the efficiency of the Oregonians.  So I sat and observed the situation.  Unlike the Salt Lake office which was always full to capacity, and where most of the other patients hobbled around slowly like the walking dead, the new office was only half full, and most patients and all staff were in pretty good spirits, despite some of patients being obviously unwell.  I mentioned this to Dr. Hopkins after my exam and he scratched his head.  "Most people we see here are in much worse shape, medically, than the folks in Utah.  The Oregonians seem to be cut from a hardier stock, and they delay seeking treatment longer, and tolerate the disabilities better than the city folk in Utah."  

I also asked about his practice, as he looked busy but less stressed, and had gained a bit of weight.  He is the chief urologist, and they now had a second young doctor on staff, plus a 3rd coming later that week.  His PA told me he was still doing a double patient load, but that would drop quickly in a month when the new doc was fully onboard.  The PA, nurses, and assistants were all pleasant, proactive, efficient and helpful.  This also in contrast to the Salt Lake practice.  Dr. Hopkins can attribute it all to the Oregon lifestyle, but I have to think his leadership has contributed more than a little bit!

I was shown to the room by the PA right on time at 9:30, and she took my weight and BP and recorded it into the system.  Then she told me to drop pants and underwear to my ankles and cover myself with the clean drape sitting on the exam table, as I would be next in line.  I asked about a urine sample and she said it was not necessary, unless I wanted the test done, which I did not.  This differed markedly from the Utah practice where I was required ALWAYS to give a urine sample, and then to completely remove all clothing except shirt and socks, and then expected to wait for 30-60 minutes lying prone on the table.  The Oregon table instead was set up in a reclining position, much like being reclined in a La-Z-Boy chair.  I assumed the position and she was back a minute later to do the Xylocaine prep, raise the table behind my back and extend the leg rest for my comfort, and raise me into position for the doc's convenience.  And the doc himself was in within 5 minutes after that.

We shook hands and exchanged greetings, then he got right down to it, pointing out that he was still using the "splash guard" smock he had in Utah.  He got to business quickly, and I felt nothing much at all, thanks to the Xylocaine.  We both focused our attention to the hi-def screen.  Since I had not drained my urine as anticipated, there was a yellow tinge and the presence of several white pellet-like things floating around. The doc dismissed those as "sediment" and told me it was perfectly normal and nothing of concern.  The exam was thorough and we both saw only normal, healthy tissue, as if nothing had ever happened.  This was followed by the always unpleasant DRE, after which the doc said my prostate was slightly enlarged.  "For a sixty year old?"  I asked, and he shook his head NO.  And that was it.  Cysto scheduled for a year later, all handled while I cleaned up and got ready to leave.  Easy-peasy and incredibly efficient.  

I phoned my wife with the good news, and set about celebrating with a large lunch of sushi with a large Japanese beer, then moved on to another restaurant's bar for an enormous piece of home-made carrot cake and a couple of glasses of excellent Oregon pinot noir wine.  Return flight and drive back into the mountains were routine, and all is right with the world.  The carrot cake was so enormous that I bought over half of it back to my wife, which she promptly gobbled up.

God is good, and so is life!

Judgment Day 2018: NOW 10 Years CANCER FREE! - August 2, 2018

The news is finally out and it is very good news indeed! After chasing my urologist literally halfway across the country and pushing the schedule out a few months, I finally had my cysto on Thursday, August 2. 

The news was welcome - "Your bladder looks fine."  ALL CLEAR, 10 years and 2 months after the last surgery.

This is a good milestone for Bladder Cancer. The biggie is two years, and it progresses like this: Probability of Bladder Cancer recurrence within 2 years is about 60%, from years 2 to 5 it drops to about 8%, then about 5% for years 6-10, and now after 10 years less than 2%. For Bladder Cancer it NEVER drops to zero.

Technically I can now claim terms like "remission" and "survivor."  But with annual cystos for life, it does not feel real to me. Not to say that I fear a recurrence.  My new lifestyle of lower weight, healthier diet, more exercise (well, more than zero anyway), and daily baking soda - gives me the confidence to live as normal, not fearing a recurrence. And if a recurrence comes, there's almost no chance of it being life-threatening - as long as I continue to do the annual cystos to keep it from getting out of hand.

Will I continue to travel to Oregon and use Dr. Hopkins?  Most likely I will. It turns out that Dr. Hopkins was recruited by the Asante Medical Group in Eugene, Oregon to replace their sole urologist, who retired shortly after Hopkins took the job. Now their plan is to build an all-new Urology practice around Hopkins - new facility, new doctors, new physician assistants, additional nursing staff, the whole works.  How does Dr. Hopkins feel about all of this?  Surprisingly not great.  The current patient load is taxing him physically and mentally, he loved living in Utah where he was born and raised and attended school, and he does not like having to adapt to new things. He told me the move was not for economics or working conditions or anything like that, but more for family - so that their younger children could grow up in his wife's home state and get a different experience from their older siblings.  He would have been happy to stay as things were.

I have to side with the wife here.  His former practice consistently treated him poorly - moving him from partner to employee, increasing work hours and decreasing compensation, and generally being only semi-competent administratively. The new practice, as it is built, will provide him the opportunity to set the stage for facilities and equipment, the quality of service, and the general tone of patient care.  He does believe it will ultimately be a different and better Urology practice than any within a couple hundred miles.  But in the meantime he is tired and stressed, and it did show on his face and in his demeanor.  I expect he will start to enjoy it within the next year or so as he gets more help and relief, and ultimately it may be truly great.  

In the meantime the scope and monitor were the latest and greatest (much better than what they had in Utah), the staff was on point, and after some initial confusion (they had scheduled me for "new patient consult" rather than cystoscopy), we got the job done quickly and with good results.  I was very happy with the overall professionalism, especially with the workload they had.  So for both myself and Dr. Hopkins, we should both be focused on looking forward.  I certainly plan to do so!

Unexpected and Unpleasant Surprise - 18 April 2018

It has taken me a few months to write this post, mostly because I needed time to process it all and deal with it, letting events play out. And because it still pisses me off.  And because life has been busy and basically good these days! And now here is the story: On a particularly pleasant day in April I was wrapping up work with some HVAC contractors who had just completed installing a brand new (and expensive) air conditioning system.  My wife called me to the phone, "Dr. Caputo's office needs to talk to you."

"Never heard of Dr. Caputo," I replied.

She insisted, "You need to talk to them."

I wrapped up quickly with the contractors and took the call. A nice young lady, let's call her Trish, from Dr. Caputo's office began to explain to me that Dr. Caputo had a conflict for my cystoscopy appointment on May 17, and she needed to help me find a new appointment time. "There's only one question," I asked, "Who the hell is Dr. Caputo?" 

"He's your urologist," she replied.

"No," I said, "Dr. Hopkins is my urologist. I have never heard of Dr. Caputo.  There must be some mistake."

"Oh!" she exclaimed. "Dr. Hopkins moved his family to Oregon last year. Dr. Caputo is your urologist now. You should have received a letter..."

At this point the conversation became extremely graphic and profane (on my side) and will not be repeated here to preserve brevity and to keep from melting your monitor.  I explained in no uncertain (and very colorful terms) that I had NOT received a letter about this, nor had I received a letter when they merged with Summit Urology, nor had I received a letter when Summit Urology was acquired by Grainger Medical Group, nor anything else important, but that I ALWAYS received letters containing bills to be paid. I also explained that I was planning to travel over 1000 miles to keep an appointment with Dr. Hopkins, and that there was no @#%$%$# way I was going to do so for the mysterious and unkown Dr. Caputo, whose very birth and ancenstry I may have called into question.  And that if she wanted to reduce the pain she was currently experiencing, be rid of me, and satisfy her action item, she needed to produce Dr. Hopkins' current contact information and location and that she had better do so quickly. Relieved for an escape from the torrent of abuse, she stammered out the name of his new practice and a city in Oregon (as it turns out, the wrong one, but nearby the right one), and we parted ways forever.

I was more than a bit perturbed by this turn of events and had to take a few moments storming around and breaking random things in the house, trying to calm down. Even so, it was quite some time before I could muster the calm to begin an extended period of Googling and phoning, insurance cross-checking and medical records requesting, HIPAA form signing, and further arguing with the incompetent practice in Utah.  In final fact, Dr. Hopkins is now practicing in Medford, Oregon, and is currently the sole urologist for the quite large Asante Medical Group.  They did take my insurance without issues, assimilated most of my records from Utah, issued new orders for PSA test and CT/IVP scans, and scheduled an appointment for me in early August.

While this date represented a delay (my cancer-free anniversary date is 31 May), it afforded me time to figure out where it was and how to get there in a reasonably efficient manner. Unfortunately there was another problem to solve.  When I retired in 2014 and adopted a nomadic lifestyle full of romance, adventure, and travel, I noted that recurring medical care was an issue.  We ultimately chose to return to Utah once per year and do all our medical stuff at once, usually in May. But over time, the best doctors retired or quit, the good ones moved to other areas, and only a couple remained.  With Hopkins gone, the primary reason to go to Utah for anything other than social connections disappeared.  We needed to find a place that would take our insurance plan and work with us to get recurring medical service for routine physicals, dermatology, ophthalmology, and for my wife - gynecology exams. Plus related lab work.  Thankfully the best man at our wedding (nearly 35 years ago) is a highly respected, Mayo-trained physician working in a large medical group in his hometown of Willmar, Minnesota. He graciously agreed to host us for an extended period in his home and also arranged for us to get appointments with top doctors in each type of practice we wanted, except for urology.  They have a top-notch urology staff, but I prefer to stick with Hopkins

The upshot is that we spent a lot of time this summer in central Minnesota, ate a lot of fresh walleye, visited a lot of new-to-us places, and re-set almost all of our medical care with a new medical group that gives us basically one-stop service for everything.  That all went relatively smoothly, and we got a lot of things done that had been postponed, and we got to spend a lot of time with our friend and his family. So the good news is that the Caputo incident gave us the impetus to re-baseline our medical plans. 

The bad news, and it pisses me off to this very day, is that Summit Urology - Grainger Medical Group would have been perfectly happy for me to travel all the way to Utah for the sole purpose of keeping my appointment, and then announce that they had switched docs on me.  It was the grace of God that Caputo had a conflict that necessitated a phone call. Probably kept me out of the Salt Lake County prison system, as I suspect that I may not have reacted in a calm and mature fashion on the spot.

But, as they say, all is well that ends well.  And the new medical group has treated us well and taken good care of us. We plan to return each spring and get our routine stuff handled there.  And we need to figure out how to get to Eugene, Oregon once per year for cystos. I will save the details of the first visit there for the next post.

2017 BCG Post-Mortem - June 21, 2017

I completed a series of 3 BCG Maintenance treatments in early May, and I have dawdled a bit on posting the results.  This behavior, as well as my very infrequent posting on the blog, are symptomatic of a very good thing.  Cancer is no longer a major factor in my day to day life. It's a nuisance, a pain, and a distraction. Somewhat like having to go in to the dentist for a root canal every once and a while. Nobody likes it, but it has to be done, and then you are back living life again, having mostly forgotten about it after a day or two. So how was it this time? Fricking awful, as usual, but temporary.  

If I could go back and do all the BCGs again (not that I want to), I would do a lot of things differently.  I started out with the philosophy that hydration was the only remedy, and the worse it was, the more hydration was needed.  Was drinking almost a gallon per hour and making things worse by flushing out electrolytes and getting extra side effects from that.  I also suspended almost everything a few days before treatments - all supplements, vitamins, alcohol, whatever.  A lot of times I blew off the deep breathing exercises, making the catheter insertions more painful and recovery from it taking longer. Probably a few other things as well.  I also focused my data gathering and reporting on urinary symptoms, which can be spectacular and colorful, but are not really meaningful to the experience.  I was describing what the urine looked like, but very little about how it felt each time, or how I was feeling in general. I even grabbed onto the term "malaise" to describe my general blah feeling, body aches, mental dullness, and physical exhaustion - most of which was caused by over-hydration and electrolyte deficiency.  

This time I tried to focus more on the general feel of things, including minor inconveniences for a few days after, which I had formerly dismissed in order to pretend to be mentally tough.  Maybe good for the ego, but not all that helpful for the audience.  I also did not discontinue any supplements or other lifestyle until the day of the treatments, except for the 3rd one - when I took a beta glucans supplement early in the morning before the treatment.  If you were wondering if beta glucans are worth the expense, or whether they do anything, I suggest you compare treatment 2 and 3.  Normally #3 would be worse, and it was much milder in this case. Here are the symptom charts from this series: 

With a 3 year gap since the last time, the first treatment was no big deal.  Just an inconvenience. The second treatment pretty much mirrored 2014, as did my protocol - no supplements, medium hydration including Gatorade, etc.  I have had much worse times with BCG in the past, but after feeling so good for so long, this second treatment was pretty tough on me mentally.  For the third treatment I took a chance and did my normal, empty-stomach, early morning beta glucans supplement. The difference was quite astounding.  Even so, I am not eager to do it again, even though the original protocol suggested by Dr. Lamm would indicate one final series of 3 maintenance treatments in 2020.

Dr. Hopkins has mentioned several times that he is unsure of the benefit of continued BCG maintenance, but he has gone along with the Lamm recommendation from the beginning.  We did skip one series by broadening the timespan from 1 year to 2 years early, and ended up skipping another by broadening the 2 years to 3 years starting last time.  We may end up blowing off the series in 2020. If you ask me now, a month later, I'd say 2020 is not going to happen. Not so much because of the nuisance, nor that I think BCG is not effective.  But more so the other supplements, lifestyle, and diet changes I have made have improved my health to the point that I think what I do now is more powerful than another BCG series would be.  So why spend another 3 days in discomfort, running to squat on the toilet and doing the biohazard thing?  I may feel differently then, if insurance is still paying, and I am in a "cowboy up" mood.  Time will tell.

In the meantime a lot of you have come and asked me something to the effect of: "Exactly WHAT is it that you are doing now?"  I suppose digging through the blog posts to find what I did and then translate in things that I changed my mind on is a big pain. So I plan to make another post later on that summarizes my current protocol and provides the rationale for each.  I need to ponder it for a bit and then get in the mood, so no promises of when, but hopefully later this summer.

Judgment Day 2017: CANCER FREE for 9 Years Now! - April 17, 2017

Due to some complex travel plans, we are about 3 weeks earlier than last year for Judgment Day. The setting is the same, Spring in Utah, and the day is nice, if not as bright as last year - to be expected for April rather than May. Last year I did not even think about the cysto at all, not even the day it happened, working on business finances for month-end closing until about an hour before the procedure. That was a big mistake. Relaxation was not achieved, and the recovery period was much longer than it should have been. This year would be different!

This year I avoided doing anything financial (despite being the day before Tax Day) and kept the business work superficial. And I deliberately spent time starting 4 hours prior to the scope doing relaxation, deep breathing, meditation and prayer. Time well invested!

The 25 minute drive to the office was uneventful, and the check-in was routine. The waiting room was packed, and even though we were shown to the exam room quickly, it was a while. Dr. Hopkins breezed in at 2:50 for my 2:00 appointment.  Not much had changed, except Dr. Hopkins has a few more grey hairs, I have a few less hairs of any color, and I had shed about 50 pounds. The Doc was looking svelte as well.  Lidocaine and scope, assisted by deep breathing exercises, was fast and painless.  Outcome was as hoped for - ALL CLEAR.  Wine and fancy snacks to celebrate.  BCGs to begin in 15 days or so, details to follow!