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!

BCG Supply News & Judgement Day! - April 20, 2015

First some quick updates:  The BCG shortage is greatly alleviated.  My doctor reported that they could order and reserve as much as they needed for any of their patients with only two weeks of notice.  While not fully mitigated, the supply chain is starting to fill the needs.  As for me, I retired from my corporate job last October, sold our house in Utah a few months ago, and got rid of most of our lifetime accumulation of stuff.  Keeping a few things in a lake house in Oklahoma, and starting a life of full-time travel.  Our location is TBD on any given day, and it promises to be a lot of fun!

Today was my latest judgement day.  Had a year off since last cystoscopy plus 3 BCG maintenance treatments.  Have since sold our house and moved out of state, but Dr. Hopkins is still in Salt Lake City.  So our first big trip since retirement was right back to where we came from a few months ago.  We had a week of business related stuff to do, and I was able to squeeze in the cysto for today.  Being busy is good, as you really don't think much or worry about the cysto.  I was able to do a bit of deep breathing exercises this morning, and then we were off to the doc's office.  With an 11AM appointment, we knew it would be late, and we had a pretty long wait in the exam room waiting for the event, which finally happened around noon.  This time allows trepidation to build.  How does one spell trepidation?  Something like this:

Surprisingly this room is far less creepy than it was in 2008 when I had my first cysto in here.  Then it was just a bench and an optical scope.  No comfy exam chair and no hi-tech video system, lights, etc.  Even so, one must spend the time somehow.  The nurse was kind enough to give us a heads up when we were next in line for the doc, so I did not have to spend the entire hour semi-naked on the table.  My wife gave me a gentle back and neck rub until the nurse came in and said we were next.  Then I just relaxed on the table and played with the stress balls an thought happy thoughts for 15 minutes or so.  The doc was relaxed, thorough and quick.  "Looks good," was the verdict, rendering my ALL CLEAR.  Now cancer free for:

We discussed next year's schedule and diagnostics.  I'm on for IVP instead of CT scan, PSA, Cysto, and 3 maintenance BCG treatments.  Scheduled the cysto for May 10, and will worry about the rest later.  Going to forget about having cancer for a while.  We went out and had an epic lunch celebration at perhaps the best restaurant in Salt Lake City, Pago.  I highly recommend it!

Thanks for all your prayers and good wishes of support.  God is good, all the time!

Updated June 2019 - Dealing With ANY Type of Cancer - WHAT TO DO? - December 3, 2014

I originally wrote this post more than five years ago.  In the time since, now more than eleven years cancer-free, I have come to different conclusions and priorities.  Even so the message is basically the same.

There are two things a cancer patient must do to survive:
1) Adopt the correct attitude
2) Adopt the correct "body chemistry"

Nothing else really matters.  All the treatments (TURBT, BCG, chemo, radiation, cystectomy or other surgeries, diet, exercise, supplements, etc.) are secondary to these two things.  Am I advising you to abandon the "standard of care" and tell your doctors to go to hell?  Absolutely not!  Attitude and body chemistry can be adjusted completely independent of the treatments you elect to undergo.

It is hard to say which of these two, attitude or chemistry, is more important.  The simple fact is this - without the right attitude, a cancer patient will not bother to change their body chemistry.  So the sequence is correct:

1) Adopt the correct attitude
2) Adopt the correct "body chemistry"


Step 1 - Let us begin with attitude.  How should someone, ANYONE, deal with a cancer diagnosis? Here is the correct attitude:


This is the first line of defense and the bottom line for ANY treatment regimen. If you choose to accept that your cancer is a death sentence, then ultimately it will be.

Don't get me wrong - I am not suggesting willpower for self-healing or other miracle working. This is much more practical.  Our culture has conditioned us to accept cancer as a death sentence.  Sometimes people survive, and that event is rare enough to be thought of as a miracle, or perhaps a statistical aberration.  It is VERY difficult to overcome this conditioning, and the more formal education one has, the more locked-in the conditioning.

People often tell me about cancers, usually a relative or close friend. Since I have cancer, and I have done some things that have been successful to date, they hope against hope that I can offer advice.  I generally suggest one or two simple things the cancer patient (not victim) could do in addition to the doctor's recommendations. People rarely pass on the suggestion, and even if they do, the cancer patients almost never try them. 

Many otherwise intelligent people abandon reason, almost as if they have operant conditioning, to accept that medical science is the only existing reaction for any recourse against cancer.  The hard truth of the matter is that the results for medical success are staggeringly low. Any logical person must therefore realize that the odds are stacked against them. Hopelessness is the default response.  And people are not willing to try anything unknown or "unscientific".  If this is your situation, you should face the reality of your attitude. By choosing not to try anything extra, you have simply chosen to die.

 Here are two examples:

For many years at work I sat beside a brilliant man. It would be reasonable to describe him as a "rocket scientist," or perhaps more accurately a missile engineer. He is also a neighbor who lives 2 blocks away. He was diagnosed with pancreatic cancer that was found to have metastasized. His condition was grave. I went over and shared what I was doing. I even made a small batch of FOCC and showed his wife how easy it was to prepare. She and I both thought it tasted pretty good. He tasted it, made a face, spit it out, and said, "Yech! I will not eat that. It tastes like pancake batter!" I was quite taken aback - standing before him as living proof of success (so far) in battling cancer, a person he knows to be of some intelligence, offering a simple recommendation to follow - yet he chose to ignore my input. It later became clear that he had (at least subconsciously) chosen to die and was not going to be inconvenienced by any extra unpleasantness or hassles suggested by me. Ironically what the doctors are doing to him is far more unpleasant than eating some "pancake batter." 

Example two: A friend of my mother's, who was the class valedictorian in her high school and had retired some years ago after a career as a brilliant theoretical physicist, reported that his wife had cancer and it was terminal. I hear this a lot (this was the second one that day), and it really makes me angry. Perhaps cancer will kill you, but to just accept that it will be so seems to me to be fundamentally and morally wrong. This fellow's scenario is typical. His wife has cancer of some type, it is a strong one (i.e. malignant), it has spread (i.e. metastasized), and there is really no hope. Of course they are getting the best doctors and choosing all the best treatments, but the odds are poor and really it is just a matter of time. 

Both of these men rejected my simple suggestions that would not have hurt anything to try, and could have helped.  The stated reason?  You have bladder cancer, but this is a different cancer, so nothing you say is applicable.  The real reason?  Both of them had accepted death as fait accompli, which is needless and dangerous, because, as it played out, both of the cancer patients became cancer victims and died a few months later.   

We have been trained (especially in America) to ONLY do what the doctor says and hope for the best. I know a lot of doctors and count some of them among my best and most faithful friends. They are some really smart people. I also know that they are human beings - trained in specialized skills to the exclusion of nearly all else. As such doctors are quite valuable resources for the things that they know about. We should pay attention to what doctors know and recommend, and we should work together with them to defeat the cancer. Let me repeat that for emphasis - WORK TO DEFEAT THE CANCER. This is step one. If you cannot take this step, then you have already decided to die from cancer. Anything you do after that is a simple matter of "just going through the motions."  

In addition to the "doctor knows best" conditioning, we also accept that there is nothing else that can be done. Just surrender to the doctors and hope/pray for the best. And I heartily recommend most things that doctors will suggest. In addition, more can be done, and these extra things lie outside the areas of your doctors' collective training. Such things should NOT be viewed as ALTERNATIVE therapies. They are simply ADDITIONAL therapies. This whole nomenclature of "alternative medicine" has been a tremendous disservice. It's wrong-headed from every angle. It's not medicine, and it's not an alternative. These are reasonable and proper actions that can be taken in addition to taking conventional medical actions. Together they form a multi-pronged attack on the cancer and provide the basis for a healthy and longer life. 

Attitude - the bottom line:  If you believe cancer will kill you, it almost certainly will.  If you believe that you can defeat the cancer, perhaps you can. 

 The goal is not to die FROM CANCER, which gives you the privilege to die from something else, hopefully much later in life. Perhaps something like a skydiving accident on your 100th birthday, having too much sex, or other happy pursuits.

This brings us to Step 2 is a combination of following the doctor's advice while educating yourself and your support team, and adding to that medical advice everything that you can to help your medical treatments to be successful. This last area is one where your doctor has had zero formal training, so he or she probably cannot help you, and most likely cannot even make an educated comment about any of it. It is far more likely that the doctor will discourage such treatments, feeling that they could reduce the already long odds.  There are a number of things to do, and I am doing many.  Over time I believe the number one thing anyone can do for ANY type of cancer is to address "body chemistry."  It is well known that cancer cells generate an acidic micro-environment which aids in their anaerobic metabolism and allows them to grow and expand at the margin.  The blood and other fluid chemistry of ALL cancer patients tends towards the acidic (lower pH) ranges.  Cancer causes acidity, and thrives in an acidic environment. How can we change the environment?

First a few words about body pH.  There is no such measure.  Doctors routinely monitor blood pH, which the body regulates using its natural buffering system to within a very narrow range in healthy people, between 7.35 and 7.45 - slightly alkaline.  (Neutral is 7.0 with values lower being acidic and higher being alkaline.)  Arterial (oxygen-rich) blood tends to range higher (7.41) while venous blood tends more toward 7.36.  For this reason most physicians scoff at the idea of alkalinity therapy to control or prevent cancer, because the bloodstream is already slightly alkaline, and it will not go above 7.45 - unless something else is seriously wrong with you.  This line is reasoning is correct, as far as it goes.  But as important as blood is, it comprises only about 10% of the total fluids in your body.

What is frequently and systematically overlooked by medical professionals is that the body is FULL of other fluids besides blood, and they are NOT as tightly buffered or regulated by natural systems.  Besides urine these include saliva, lymph, spinal fluid, interstitial fluid, bile, aqueous and vitreous humors (in your eyeballs), endolymph (in your inner ear), and most importantly and most abundantly - cytosol - the fluid within each cell.  Just to give you an idea, an average human male is about 60% water. If he weighs 190 pounds, then about 114 pounds are water.  Most humans have about 5 liters of blood.  A liter of water weighs about 2.2 pounds (and blood is a bit lighter than pure water). So only about 10-11 pounds of the 114 pounds of water is in your blood, which is pH controlled.  That means there are at least 100 pounds (over 45 liters) of water-based fluids in your body other than blood, none of which are pH regulated like blood. The easiest one to measure pH on yourself is urine.

Measuring urine pH is potentially very helpful.  Sadly, doctors will scoff at the idea, because urine naturally ranges widely in pH.  As it should.  But one must consider the function of urine.  Its purpose is for elimination of things your body doesn't need, extracted from the bloodstream by the kidneys.  While urine is mostly water, it can contain quite a few other things - over 3000 other things.  The curious can find the entire list here: Urine Metabolome  These things range from biological trash (broken cell pieces, enzymes, proteins, etc.) to salts, drugs, and environmental toxins.  If you have too much of something present nearly anywhere in your body, it should ultimately show up in your urine.  So if your urine is usually acid, that means that, somewhere in your body (probably many places) are running too acidic.  This condition is common in almost all cancer patients, no matter what kind of cancer they have.  If we could implement something that influences the body so that urine becomes routinely neutral or alkaline, this would imply that the alkaline  capacity of the fluids in your body (other than blood) is maxed out - creating an environment that is less hospitable or even toxic to cancer growth.  

I experimented for some weeks with diet, trying to modify food and drink intake to force urine to be less acid.  It was a total failure, and was reproduced by other readers of the blog.  You can see the details in this post. 

You simply CANNOT influence body chemistry through diet. Even if you eat a kitchen sink full of broccoli and nothing else but distilled water daily, even this extreme diet cannot influence a very acidic body chemistry to any useful degree.  A more dramatic input is required.  What can you do?

Here is what I recommend: measure your urine pH for several days to determine if you have excess acidity.  If so add one level teaspoon (that's TEAspoon, 5g, and NOT tablespoon) of baking soda to 8-12 oz or more of water and stir to dissolve. 

Use a kitchen measure spoon, not a teaspoon from the flatware drawer.  Drink the baking soda mixture ON AN EMPTY STOMACH (3-4 hours or more after your last meal) and wait at least 20 minutes afterward before eating any food (or drinking anything with food value, such as sugary drinks, jello, or soup).  Continue to monitor your urine pH and adjust the timing and amount of baking soda so that you can keep your urine pH alkaline (7.0 or higher) for 24 hours or more.  I have dialed in to one teaspoon, slightly heaped, every day - 7 days per week.  (Don't try to double up the next day if you skip a day - this will probably result in a bout of diarrhea!)  This is the simplest and easiest way to fight ANY type of cancer.

Be advised that the "alkalinity theory" of cancer treatment has been "debunked" in many places, most of which can be found with a web search.  These debunkers make two primary errors - first they assume that blood pH is what we are talking about (even though blood only represents 10% of the fluids in your body), and second they assume that diet is the only method to implement alkalinity.  Both assumptions are wrong.  We are NOT trying to influence blood pH, nor are we trying to influence body chemistry through dietary changes!  You will see BOTH of these incorrect presumptions embedded and implicit in all the literature against this approach.  Here is a link to a pretty good one, and really he doesn't state that the approach won't work, merely that there is a lack of evidence to support a diet-based approach, and this is NOT a diet-based approach!

There are many other additional things you can do to fight cancer, in addition to what your doctors recommend, but having the right attitude and having the right body chemistry are the best place to start.  Changing both of these will not hurt anything, and will actually help to win the battle against any type of cancer.

In 2008 I developed a logic diagram that breaks down what to do and why. I updated it in 2014, and again in 2019. You can see more rationale on the things I recommend and why in the updated post at this link: https://gotbladdercancer.blogspot.com/2009/10/dealing-with-any-type-of-cancer-what-to.html