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

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:

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 post here: 

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!

Judgement Day 2016: 8 Years Cancer Free! - May 10, 2016

Today I was scheduled for my "routine" annual cystoscopy and I had already scheduled 3 maintenance BCGs for the next 3 Fridays (early, at 8:30AM).  Unlike the past, I did not have a day where I began to think about it in advance, nor had I much time to develop any trepidation.  Even my sleep and dreams last night were neutral, not even thinking about it then.  While it's hardly a non-event, I suppose by now it has become routine, and I am coming to expect ALL CLEAR results each time.  Not that a recurrence couldn't happen at this late date, but any recurrence now is highly unlikely to be more than a major nuisance.  One factor is that retirement has mellowed my outlook on almost everything, and the business is up and running now - so no first year stresses from that startup activity either.  

Today began as crisp, cool (maybe cold) and clear, then developed into one of those crisp, clean Utah Spring days that are so typical most locals take them for granted.  Around 60 degrees (F) and clear skies with unlimited visibility - absolutely breathtaking.  Check out this view from the back porch of our rented accommodation as I type this:

With a beautiful day as a backdrop, I went through my morning routines: baking soda, stretching exercises for low back and sciatica, some other general stretches, check email and business status, and so forth.  I had about an hour to use before we needed to head to the clinic, so I began work on our April accounting for the business, still not thinking about the upcoming procedure.  We left at 9:35 for the 25 minute drive to the clinic, which has been renamed.  Check in was quick, but the renaming meant filling out on paper ALL the previous information they already had, on new paper forms, because "in the merger, our systems were incompatible."  Any decent Lean or Six Sigma practitioner could tell you that such a statement is absolute bullshit.  It would have been a simple matter to format the data and arrange it for import, or at worst case print it all out and pay someone to type it in again - which they were already doing after NOT paying me to fill out my portion by hand.  But such thoughts are a lifetime ago in a galaxy far, far away.  We were shown into the major exam room, a bit more comfortable and less creepy than the small one we had last year.  Still, one could get some deja vu feelings of "Little Shop of Horrors" from the setup...

I finished my paperwork duties and around 10:15, and around 10:30 they told me I was next, so I got arranged on the table, stress balls in hand, and Dr. Hopkins strolled in around 10 minutes later.  He reviewed my PSA (0.73) and informed me that my IVP X-rays from last week looked clean.  He went about the cysto quickly, not really waiting for the local anesthetic to take hold, and I gave both my stress balls quite the workout at first.  We all watched on the screen and saw absolutely nothing of note - not even the famous "red spots" that others have experienced.  After that and a quick DRE, we began discussing treatment and the path forward.  Dr. Hopkins said he had seen recurrence early and he had seen recurrence late, and 10 years is the target to reach for "remission" in Bladder Cancer.  He added that there is a VERY low chance of progression (that the cancer would be worse) in late recurrence where I would be now.  Most likely we would do another TURBT and re-evaluate treatment going forward from that.  A major nuisance at worst.  He also said about half the BCG community does not do ANY maintenance BCG, and the other half does it routinely.  There is still a dearth of evidence to support long term maintenance, and he was willing to call it finished now, at 8 years tumor-free.  I mentioned that the original Lamm protocol for my case was to do it now, and again in 2018, and a final one in 2020.  He was willing to go with that, but I suggested an alternative - wait a year, do a series in 2017, and then a final one at 2020.  This skips only one out of the original Lamm protocol maintenance treatments and keeps maintenance going for the specified period.  He agreed, and we quickly canceled the BCGs for the 3 upcoming weeks.  That's a great feeling of FREEDOM now!

After cleaning up and discharging the saline used for the cysto, we headed to our favorite place to eat in SLC for a splurge lunch.  If you are ever in the area, I highly recommend it (but no longer open for lunch): Pago at 9th and 9th.  We both had the soup of the day, a delicious carrot and ginger.  Kathryn had the special tacos (steak and cauliflower) while I had the famous Pago burger.  They have an excellent and very pricy wine list, so we chose some very nice organic Hefeweizen beers for our libation.  An excellent place, with and excellent meal and service.  God is good, ALL THE TIME!

Something Old and Something New - October 22, 2015

Baking soda - it's the bomb!  Or so we thought until Julie T. in Illinois had a recurrence scare a couple of months ago.  I was confident her TURBT would produce benign results.  I was very confident, because Julie T. is one of the few who uses baking soda daily as a preventative for cancer recurrence.  And the final results are in.  Microscopic analysis of the biopsies taken during her TURBT showed an unusual thickening of some cells in the bladder wall, but no cancer at all.  And 3 months later her latest cysto has showed ALL CLEAR again.  So perhaps baking soda IS the bomb after all.

Something OLD - Julie sent an article about Dr. Otto Warburg, the man who discovered cancer.  He also noted that cancer cells thrive without oxygen, and that excess oxygen and an alkaline environment make it impossible for cancer to live, but easy for healthy, normal cells to thrive.  He also had other ideas about health and disease, some of which have proved to be incorrect.  A quick glance at Amazon shows now many books ranting about government and agency lies and conspiracies, stating that baking soda cures cancer and everyone has known it for 100 years.  But the info was suppressed for whatever reason.  I am not a fan of hand waving and accusation, and I feel these hype-books do more harm than good.  The facts are simple - and the answer is simple, and most people I know refuse to believe that something so simple can be true.  Trust me (and Julie T. and a few others) - Baking Soda taken once or twice daily on an EMPTY stomach is cheap and effective.  It is good for those who have cancer, those who HAD cancer, and those who have not yet had the displeasure.  I am literally betting my life on it.  Bottom line - it won't hurt you and it might well save you, so why the hell not?

Something NEW - John B. in Minnesota has access to all the latest tech via his medical team.  The new kid on the cystoscopy block is now blue light.  Purportedly blue light combined with a chemical agent is better at revealing bladder tumors visually.  You can read a brief summary of the process HERE.  Even better, below is a video in which John B.'s own doctor explains the process.  Enjoy!

RECURRENCE, It CAN Happen! - August 1, 2015

Update: Micro-pathology showed something less than full recurrence for Julie.  She and I concur that baking soda is working its miracles.  Here are the exact words of the path report.  You can judge for yourself.  Conservative diagnosis is that it's "indicative of recurrence."  My diagnosis is that it's indicative of the efficacy of baking soda regimen.

Sections show two fragments of urothlium with are extensively denuded and contain some cautery artifact.  There is a focal area containing somewhat thickened urothelium and a suggestion of a papillae. There is no significant atypia identified. This area is suggestive of a low-grade papillary urothelium carcinoma but the scant amount present precludes definitive diagnosis.

Recurrence - it's a scary deal.  In bladder cancer without treatment of any kind there is a 90+% chance of recurrence in 10 years.  With treatment, this number is cut to 50% or less, still very high.  I believe that baking soda, diet, exercise, and supplements can reduce this number even more.   In our non-statistically significant sample of folks who follow this blog and keep me posted with their progress, we have had only 1 case of recurrence reported, after a cysto with no mytomycin bake or BCG follow-up, within 6 months.  For the rest, we have had no recurrences.  Until now.  Julie T. in Illinois had some doubts about her physician and had an appointment with another for a "meet and greet."  The decision was made to do a cysto on the spot.  The doc felt he saw a very small tumor in a completely different area.  He speculated that it might be recurrence based on stirring up cancer "seed cells" from the previous TURBT and cysto poking around.  The prior TURBT did not have a chemo bake afterwards.  On July 15 a second TURBT was performed by the new doc with a mytomycin chemo bake following.  Pathology revealed a small superficial low grade papillary tumor recurrence.  That was the bad news.

Was there any good news?  Absolutely!  Let's start with this - follow up exams via cystoscopy do detect recurrence early.  And then there was the size and grade, both favorable.  On top of that was the opportunity to do the chemo bake afterwards, and to look forward to a great follow-up regimen with a new doctor.  Julie is holding up well, and has her game face on.  Nobody wants to go back to quarterly cystos, and it's a mere nuisance in the big scheme of things.  Easy for me to say, I suppose.  

Here is Julie's take:

Not the news I had hoped for, but I am very thankful it was found super early and the only further treatment is 3 month follow up at this point. It sucks going back to scopes every 90 days, but I guess this is the nature of the disease. I am planning on continuing the baking soda regimen as my new dr. feels this recurrence was caused from the previous dr. going in in and stirring up old cancer cells that had been lying dormant.  Even though the pathology report showed no cancer cells present, it is possible that a stray cell was activated and seeded itself in the new location.  I am frustrated a little because I asked the old dr. to use mitomycin after the surgery in and was told no.  It was used this time. I feel if I had been listened to, then this may not have happened.  I supposed this is just another reason why I needed to changed dr. 

What was most surprising and disturbing to me was that Julie was one of the first to adopt a baking soda regimen, taking a teaspoon nightly in 4-6 ounces of water.  This was enough to keep her urine pH between 5.5-6.5 during the day.  As you all know, I am a big proponent of this regimen.  The only thing I would suggest different for Julie would be to go to two doses per day, bedtime and early morning, with the goal to keep urine pH at 7.0 or higher for 24 hours.  I have had to adjust my personal amount to a great heaping teaspoon each morning with about 14 oz of water to make it palatable.  This keeps my urine pH at 7.5 or higher for 24 hours, even if I drink red wine in the evenings.  With the new doc, the new TURBT, the new chemo bake, and increased baking soda regimen, I think Julie will be in great shape for zero recurrence in the future.

For the rest of us this is NOT a bad news story.  This tells us that the ongoing surveillance is necessary and recurrence is not necessarily a big deal.  This disease can be managed by staying on top of it aggressively.  Hang in there, and keep the attitudes positive!