Judgment Day #11 on 9/11 - September 11, 2012

Probably most of you are remembering today (9/11) for another significant reason.  For me, it seemed an appropriate date to schedule my last cystoscopy for 2012.  I had a week's vacation and a weekend home to relax and prepare physically and mentally.  The 9AM appointment came all too soon.  The doctor was cheerful and chipper, came in and talked about adopting a new son from China last winter. He had originally planned to do it this month, but when they call, you have to go.  The boy has brought the family great joy, despite some medical issues.  So his vacation this year is quite ambitious - a hike over the Andes mountains in Peru to arrive in Machu Picchu.  He and his wife plan to spend several days and nights above 12,000 feet elevation, HIKING as high as 16,000 feet.  I cannot even imagine it.  

The procedure went quickly and the wonderful ALL CLEAR was welcome.  The doctor confirmed that we would do 3 BCG treatments in October, and then no scope (or PSA test) until September 2013!  This clear report now marks 52 months cancer-free, nearly 4.5 years.  Keep in mind that terms like "remission" don't apply to bladder cancer for at least 10 years, so not quite halfway there yet!

This makes for a happy day, and we will start making big plans for vacation, visiting friends, travel, and whatnot right away!  No more stunned period, waiting for the good news to sink in.  As soon as I feel better, perhaps I will try a happy dance.

Some details of the procedure follow, so those with weak constitutions may want to stop reading here...

There was some discomfort with the procedure this time, despite being able to use the very nice Storz video scope setup for the 3rd time in a row.  The doc started quickly, but I was ready - fully relaxed from deep breathing and hypnosis techniques.  No Xylocaine prep, and little if any lube used this time.  Frankly the whole ordeal (maybe 30 seconds) hurt like hell.  Even pointing my toes up and down alternately and focusing attention on the screen did not help.  I was able to stay relaxed and breathe through it.  Unsurprisingly my first urination at home (not counting voiding the saline solution at the office) showed a slight trace of blood (microhematuria), although the urine was nicely alkaline in pH.  It had been alkaline all of yesterday, so I think the stress was effectively managed.  For future scopes I plan to ask for the Xylocaine prep - even though it is messy, it helps a lot.  Not necessary for BCGs though!

Postmortem:  VERY severe symptoms (both razor blades and fire) began about 3 hours after the scope and remained with full pain levels unabated for 48 hours.  Began to ease a bit after that.

Final Postmortem:  Now pretty much back to normal FOUR full 24-hour days after the scope.  (still minor discomforts on Friday evening, at 3.5 days)

BCG Maintenance Series 6 - September 9, 16 & 30 2011

Just over three weeks ago I posted the successful results of my Judgment Day cystoscopy and praised the merits of modern technology - a High Definition monitor and a more flexible, smaller diameter probe.  In the three short conversations with Dr. Hopkins since then, I learned more about it.  While it certainly is High Def and more flexible, the doc claims it is exactly the same size (14 gauge French) as the other two he has used on me.  They have three scopes and the staff rotates them around on some basis unknown to him.  While he claimed (jokingly) that it was his excellent handling of the scope that produced zero symptoms afterwards instead of several hours pissing fire and 36 hours total recovery, it was probably a combination of several things:  My expectations that it was smaller, my relaxed state via deep breathing (which is normal), the presence of the High Def monitor to take my focus and concentration away from the area of discomfort, the increased flexibility of the Storz scope probe, and the wider High Def camera that allowed him to inspect the entire bladder lining and ureter openings more quickly with fewer passes.  While I would still like to take a micrometer to the three scopes and see for myself, they are not going to let me do it!  Truth be told, he prefers the oldest (and least flexible) scope with the optical viewer (no camera or monitor).  He says the ones with the monitors are upside down "The top of the screen is not the top of you."  I absolutely prefer the monitors as my all-consuming focus is on the screen rather than what is happening below my waistline!

Moving on to the treatments - as I mentioned in my last post, the non-invasive nature of the new scope enabled me to accelerate the BCG plan, but (as you can deduce from the dates in the post title) I had to skip a week between #2 and #3.  This was preferred to being filled of toxic bio-cooties the day before our 28th wedding anniversary!  And this is the first time I have had a full year off between BCG maintenance treatments.  The big question was whether the intensity would continue to build, as it had in the past.  The answer to this big question boils down to good news and bad news.  Good news - the treatments and recovery were slightly better than the last series.  While the urinary symptoms were nearly identical to the minute (see charts below if not squeamish), the day after was, in general, MUCH better than the last few times.  The bad news is that the day after symptoms of the past were, in part, the result of an error on my part - an error now hopefully corrected for the future!  My pursuit of hydration was (as is my style) so single-mindedly focused that I was exacerbating evening and day after symptoms with the additional misery of electrolyte depletion.  I shall publish a revised hydration/electrolyte plan in my next post.

Speaking of BCG, I have now completed the initial set (of 6) and six additional maintenance sets (of 3).  Checking my calendar, I have (if all goes well) six remaining maintenance sets (of 3).  So that makes me halfway through maintenance and 57% complete with BCG.  Of course the frequency spaces out, so the timeframe is just the opposite.  One set per year for three years, then one every second year for three final sets, making the last BCG around the end of September, 2020.  If all goes well and there is no recurrence, I will be 62 years old for my last set.  Maybe they will invent a pill or something before then!

So now for the BCG Report - Round 1 was scheduled for 10:30 or so, which (as expected) turned out to be 11:15AM.  Note, the special handling period and super hydration period is 8 hours, and the initial recovery is another 3-4 hours.  As it turned out, I did not get into bed for some sleep until after Midnight, so imagine what that would have been if I had accepted the schedule change to 3PM.  The doc was dressed in his casual Friday attire and in a very good mood.  Installation was completely uneventful, as was the trip home. The urinary symptoms, surprisingly, were almost to the minute exactly the same as the first round a year ago.  The post handling and recovery were much worse, and that gave me a "Eureka moment."  From the charts below (don't enlarge them if you are at all squeamish - 3 out of 10 on nausea scale), you can see that I had a one-time, very severe urinary symptom at about hour 9 last year.  At the time I attributed the occurrence to my failure to continue hydrating enough, ramping down to almost zero instead of something more gradual.  I compensated by massively hydrating and spent all night peeing instead of sleeping.  I resolved to learn my lesson and do better this time.  And so I did.  I kept my hydration at 2 quarts the first hour, 1 quart the second hour, and 1 quart per 30 minutes or so thereafter.  (1 quart = 947ml for those outside the USA).  Then I ramped down to 1 quart every 45 minutes after hour 8, and slowly stepping down afterward.  Two surprising things happened.  Despite my accelerated hydration, the SAME symptom appeared at essentially the same time, and I felt MUCH worse that night and the following day.  Very odd for round 1.  The next morning I felt so bad that I asked my wife to run to the corner store and buy me some Gatorade.  One hour after finishing a quart of Gatorade, I felt much better - moving from horrible to just blah.  This lasted for several hours, and I had no appetite at all until 3PM.  The only thing I had eaten the day before was a bowl of veggie lentil soup around Noon.  I deduced that my dedicated hydration had not only failed to improve the urinary symptoms, combined with the frequent urination it had also washed the electrolytes out of my system! I decided to add some Gatorade to my hydration plan the following week for Round 2.  See the detail charts below for Round 1 for this year and last year below.  Click to enlarge (3/10 on the squeamish scale).

Round 1 This Year

Round 1 Last Year

BCG Report for Round 2 - Scheduled for 8:30 (the earliest possible time) and happened at 8:50. Again the installation was routine. The doctor and most of the office staff were decked out in their University colors - Blue for Brigham Young University and Red for the University of Utah.  My doc was wearing his red booster shirt, and was rewarded the next day with a decisive victory in the big Utah football rivalry.  Urinary symptoms were again identical to the previous year, so all was good there.  I rotated in 1 quart of Gatorade every 3rd or 4th quart, but found it to sit in my stomach like a lead brick, so I had to slow it down a bit.  Still, all progressed normally, and you can see from the charts below (unless you are squeamish) that the symptoms were right in line.  Even better, the recovery time the next day was MUCH shorter! Click to enlarge (3.5 out of 10 on squeamish scale).

Round 2 Last Year

Round 2 This Year

Round 3 was more of the same - scheduled for 8:30 and administered at 8:55. I started sipping Gatorade right after lunch and continued throughout the day.  Symptoms were right in line with last year, perhaps a bit less.  If less, I imagine it was as much from the extra week off as from the Gatorade.  In any case the day after was less miserable, thanks mostly to the Gatorade.  I think I should probably add even more, as the near-colorless urine all through the evening and next day is indicative of electrolyte shortage.  More on this in an upcoming post!  See the data below (5 out of 10 on the squeamish scale).

Round 3 Last Year

Round 3 This Year

I presume most of you are more clever than I am, having beer or some other form of electrolyte input during your BCG days.  As always, let me know if you have any questions or concerns.  Comments welcome below.

Judgment Day #9 All Clear, and Technology Rocks! - September 8, 2011

First the great and awesome news: Judgment Day #9 came and went with an ALL CLEAR now marking 39 months cancer free!  God is indeed good, all the time!  Of course, trials are not out of the picture, so try to enjoy the following VERY LONG blog posting about the good, the bad, and the ugly of today's Judgment Day!

Trying to get work done the day before a Judgment Day and trying to relax in preparation are pretty much mutually exclusive pursuits.  What will easily make the whole relaxation side impossible is a call from the front office staff at the Urology Clinic informing me that my second (of three) upcoming BCG treatments, optimistically and aggressively scheduled and planned last March, would need to be changed.  Could I possibly come in the afternoon instead of 8:30 in the morning.  Undeniably I could have done so, and even more certain was the fact that I would NOT be doing that!

Just to remind all of you, I do plan these things out in advance for a reason.  The longer in advance, the more likely the chances of getting the earliest appointment in the morning, late in the week.  We want this for two reasons: A) The sooner you start the sooner it is over with for the day; and B) Now that American businesses are all employee-hostile, I have to use "Vacation" days to cover any medical time off, so Friday is the very best day.  BGC treatments are a two day ordeal with the first day consisting of a two-hour holding period followed by a six-hour special handling period, and then add two to six hours for full system flushing and urinary symptoms to dissipate.  The night and next day are consumed by exhaustion, body aches, and "general malaise."  So you want early in the day to get to the end of both Day 1 (to sleep) and Day 2 (to be mostly back to normal) as soon as possible.  And you want late in the week to spread the recovery time over a Saturday and consume only one "Vacation" day.  Worst vacation ever, so logical to minimize it.

Let me recap and paraphrase the friendly phone call for you:

Chirpy female voice: "Hi, this is xxxxxxx, from yyyyyyy Urology Clinic."
 Me: "Hello."
CFV: "I see you have a BCG appointment with Liz on September 23.  She will not be available that morning, so would you mind coming in the afternoon instead?"
Me: "Yes."
CFV: "So would 2:00PM work for you?"
Me: "No."
CFV: "You are not available?"
Me: "You should have one of these BCG treatments yourself."
Slightly less chirpy FV: "Pardon me?"
Me: "If you had any idea what you were requesting, you would never have called me in the first place."
CFV: "Well you see Liz has surgery that morning and won't be available until the afternoon."
Me: "Not my problem"
CFV: "I'm sorry?"
Me: "Look.  There is a 12 hour recovery period from a BCG treatment.  Having it at 2PM means that the soonest I can even think about going to bed is 2AM on Saturday.  Is that what you are sorry about, or is it the fact that I cannot have any food or drink for 16 hours while I wait for Liz to finish her morning business and a leisurely lunch?"
Not at all chirpy FV: "I'll have someone else call you back."
CLICK

This is annoying on so many levels.  The only reason I had Liz scheduled at all was because Dr. Hopkins does surgeries every other Friday, and I was trying to save a "vacation" day!  Someone did indeed call me back, and we explored a few options, none of which were acceptable.  It was down to 2PM, take it or leave it.  I hung up and began stewing, fuming, cursing, and nearly spitting.  I bent a few ears of innocent by-standing coworkers, who were sympathetic (and probably afraid not to be).  A few hours later, I talked to another coworker, TK, whose business (and perhaps her life in general) is about solving problems and getting things done.  We reviewed the options, and came up with two slightly less awful alternatives. 
1) Have the BCG after the cystoscope or the next day, ruining some pre-existing dinner plans as Treatment #1, then do Week 1 and Week 3 as scheduled for treatments #2 and #3, skipping Liz's busy morning.  Problem is that the scope does enough trauma to make BCG ill-advised without several days to recover.
2) Skip Liz's busy morning and delay the treatment until Week 4.  Problem there is that puts recovery right on top of our 28th wedding anniversary.  One could surmise that after the first 26 or so these get to be a matter of routine, but females will often disagree!
3) Suggest to the doc during Week 1 that he give us the BCG and catheter and we do the BCG at home for Week 2.  Probably all kinds of legal and regulatory reasons why that won't work, but I was prepared to be stubborn about it!

What evaporated was all hope of relaxation, deep breathing exercises, or a decent night's sleep.  I forced myself to do one deep breathing set before midnight, and caught about 4 hours of fitful sleep.By morning I was too exhausted to be frustrated, had a nice breakfast and shower, and did some deep breathing practice.  It really does work and really does help.  Did a few more sessions in the car during our 50 minute drive to the clinic.  By the time I arrived, I was as calm as a summer breeze.  Processed in with minimal hassles and was shown to the exam room. I delivered my urine sample and returned, my gaze immediately drawn to the VERY new, very high tech instrument on the exam prep table. I asked the nurse, Is this the new narrow-gauge scope?  "Yes," she replied, "It's even smaller than a catheter!"  While she was not quite right (victim of a Boise State education - it's a football school now), it was exactly the size of a 14 gauge French catheter, and SIGNIFICANTLY smaller in diameter than the old scope.  It also required the use of a very big high-res monitor.  This was enough to make me forget all frustrations for sure.  One of our Bladder Cancer frat buddies, Ben F. in Louisiana (aka Mobile Biohazard Man), used one recently and declared there was no recovery period at all.  This baby was the latest from Karl Storz in Germany, and it looked to be a major improvement.
 
Dr. Hopkins breezed in quickly and, after the usual pleasantries, he got right to work. There was a bit of confusion getting the monitor turned on, but then we were off to the races, and...

NOTHING!

Well, almost nothing.  But nothing compared to past experience.  This Storz endoscope ROCKS!  There has been very minor recovery pain at the very tip end of things, but really nothing.  After cleanup and dressing, I joined the Doc at the scheduling table and we looked at options.  With the low invasion factor from the new scope, Option 1 above moved into first position, and we pursued it.  The problem was that he advised against today, and the Doc was not planning to come in the next day.  But he relented and agreed to come in at 10:30 (which we both know will be 11 or 11:30), but still preferable to 2PM or later.  And BCG starts 1 week sooner.  Still skipping the Liz week, so ending as originally scheduled on September 30.  And now many hours later I can assure you that the smaller scope is absolutely the way to go!

Judgment Day #8 - ALL CLEAR AGAIN! - March 3, 2011

JUDGMENT DAY arrived with a bang - literally! The bright early morning became suddenly dark at 7:30AM when a very severe storm cell hovered over our house and we were circled about with lightning and thunder for about 15 minutes - most unusual for this time of year. The streets (clean the night before) were covered with snow and ice, but warmer temperatures cleared it up before we headed down the mountain to the doctor's office. Still dark clouds lingered around the mountains and out in the salt flats, heightening my natural sense of impending doom. Most of my friends and co-workers do not understand my attitude. Having been cancer-free for over two years, they all say, "You will be fine." And of course I will be, whether or not the cancer returns.

But perhaps I should explain why I do not choose to be overly optimistic prior to judgment days. There are two primary reasons, one statistical and one psychological.

1) The statistical probability of recurrence of bladder cancer within 10 years is very high - over 80-85%. This terrible mathematical fact is offset by the happy circumstance that I have gone two years without recurrence, meaning that a recurrence will most likely not be life-threatening or particularly difficult to deal with - perhaps just another TURBT surgery and continued BCG treatments. Another offsetting factor is that there is about a 50% success rate with BCG treatments, so the chance of discovering cancer at each cystoscopy event is really 40-43%. Perhaps less, as there are no statistical data to support the benefits (or non-benefits) from FOCC, dietary changes, exercise, PectaSol-C, vitamins, or supplements. Roughly speaking, it's slightly better than a flip of a coin each time I go in for an exam whether or not cancer will be detected. Bladder Cancer is not a disease where one says "they got it all" and you go on with your life having been cured. It is a constant threat, monitored by annual cystoscopies FOR LIFE. That said, I am delighted to have Bladder Cancer rather than something more aggressive and/or isolated.

2) If one convinces oneself that all will be OK and the outcome is negative, it can be a crushing blow. I would much rather be realistic about probable outcomes and be psychologically ready to deal with them all. Thereby a positive, healthy, and beneficial attitude may be maintained throughout the process. That said, you really don't want to be around me much the week before an exam!

Back to our story - earlier in the week (on Monday) I called the doctor's office to inquire why they had not scheduled me for a CT scan yet. The young lady in charge quickly verified (through their new online chart system) that I was indeed due for it, and promised to make it happen quickly. After the usual bungling incompetence (that seems to afflict ALL medical staff) I ended up with an appointment at 10:30 on Tuesday, creating a conflict with the only work meeting I had for the day. Oh well. I arrived at the imaging office, chosen as a cost-saving alternative to the hospital, a few minutes early, where my paperwork was taken and processed. I was shown to a dressing area to change into some very comfortable surgical scrubs - another great improvement over the hospital and its gowns. On a hunch, I asked the technician to verify the exact X-ray screens I was to receive. This set off a multi-way conversation between the radiologist and members of the imaging lab staff with members of the doctor's office staff, and it ended up with Dr. Hopkins being called to the phone personally to discuss the matter. Apparently technology is changing and improving, and the imaging experts convinced the doctor to choose a slightly different diagnostic set that meant less X-rays for me - a good thing. Unfortunately the smaller set still needed intravenous (IV) iodine contrast and its associated risks and nasty, metallic aftertaste (even though I did not drink it)! This discussion caused some delay, but the X-ray machine was quickly set to spin mode and I was on my way with both films and CD in hand in short order.

Part of the pre-CT instructions were to fast at least 4 hours beforehand and not to have any liquids for 1 hour prior. So I found myself hungry and thirsty afterward, still tasting metal at the back of my throat. Heading north back to work I passed through Salt Lake City. I decided to head to a deli for a sandwich, but recalling the difficult parking, crowds, and standing in line required, I opted to swing by Frida Bistro to see if they were open for lunch. Good call - as they were open, not busy, and eager to provide outstanding gourmet fare at a reasonable price in a timely fashion. It was so good that I resolved to return this weekend with my wife for a celebratory dinner.

Thursday's exam was scheduled late in the afternoon - not my first choice, as it makes for half a day of getting ready. I quit work early yesterday, went to bed early and exhausted, and arose still feeling tired. Spent the morning doing routine chores, reading and answering emails, and practicing my deep breathing for relaxation. All went well and time flew by quickly. Uncharacteristically I went with a full breakfast, but by 1PM I was starting to feel nauseous and chose to skip lunch. More deep breathing overcame the nausea, and I gathered my paperwork and thoughts and climbed into the passenger seat for the drive down the mountain and into Salt Lake City. I read the comic page from several weeks worth of newspapers as we made the 50 minute drive in silence.

The doctor's office was jammed with a line to check in. There are four urologists and two physician's assistants in the practice, and it was my good providence that Dr. Hopkins was the only one not running behind schedule late in the afternoon. We were processed in and shown to an exam room within minutes. After the obligatory urine sample delivery and another 5 minute wait we were taken to the procedure room. Relieved to see the monitor sitting beside the scope, we looked forward to witnessing the procedure. After less than 10 minutes (a new record) Dr. Hopkins came in, shook hands, and reviewed my case: "Your X-rays look great. Some scarring on one kidney, probably from an earlier infection - no problem there. Diagnosed in 2008, clear for 2 years, six months between cystoscopies, 12 months between BCGs. So no BCG this time, but we will do it in September. PSA last checked last September?" I corrected him that it was January, 2010. " want those done annually, so go get it again," was his response. Thirty seconds later he began the exam and an interminable 60 seconds more later he was complete. "All clear - no cancer." And with a promise that we could schedule both cysto and BCGs in September he was gone.

It's hard to explain how one feels after these exams and news. I envision myself doing a fist pump, making an exclamation, offering a prayer of thanks. In reality it is an anticlimax. I told my wife it feels like just after exercise. Tired, not exhilarated, a load lifted. I just wanted to relax, alone, in a dark room for a while. But practical matters preclude that. For one, your junk HURTS a bit, and there is a mess to clean up, clothing to wear, saline solution to be discharged into the toilet, a prophylactic antibiotic pill to take, and future appointments to schedule. Then there is an hour drive home, during which I became ravenously hungry. This problem now had a simple solution in the form of a new, convenient location of the In-N-Out Burger chain. The buns are not on the diet, but an order "protein style" gets you delicious burgers delivered in a lettuce wrap. No fries, sugary soft drinks, or shakes for us. It was a pleasant respite.

Sun broke out before we got home, lightening the landscape and my mood. Reality had begun to sink in. 33 months cancer free! 6 months of freedom from medical intervention. It will be a good summer indeed! In the meantime we have the joy of enthusiasm mildly offset by the fiery pain of urination for a day or so...

I started sending out emails to various parties when I arrived home, and I learned that Brian S. in Atlanta had a rough time. Too much pain, swelling, and bleeding to do his cystoscopy. They will give him drugs to try to repair his bladder and try again in a month, while he is left to wonder if the cancer has come back or not. Next up we have HK in Toronto with a cysto on April 12, and David F. in England around the same timeframe. Prayers and support are always appreciated for all and by all. I received contacts from all over the world with prayers and good wishes for today. I thank you all for your support!

Judgment Day #7 - Report, Aftermath, & Musings - September 11, 2010

Two days later and I have pretty much recovered physically. Mentally? Jury is still out. Each successive Judgment Day does get easier to prepare for and to go through. Still the stress level is quite high, and there is a definite CRASH afterward. A couple of years ago I responded to the good news with joy and then a nasty head cold for a week. Despite the outward appearance, the body will indeed bottle up the stress, and the release can be ugly. For the past two or three I would simply not think about it until about a week before, and then I would be a mix of ugly mood swings and semi-suppressed anxiety. Taking a nice long vacation in advance of the date has become our practice for two reasons: 1) Trying to do more carpe diem activities, and 2) You just never know if the opportunity will be gone soon. Macabre? Maybe, but reason #2 does help drive towards reason #1, so it's all good. We prefaced this Judgment Day with an 8 day, 2000 mile motorcycle trip throughout some of the most beautiful parts of Idaho. Chasing rivers up and down mountains through forests will do wonders for your outlook, as will a nice slice of huckleberry pie! My favorite, these berries are hand picked and grown only in the wild, so they are naturally organic and full of cancer-fighting antioxidants. We arrived home late Saturday evening, tired but refreshed from our cobweb-clearing blast through fresh air and mountain vistas. No work on Sunday or Monday (Labor Day holiday in US), just time to relax at home. I found myself curiously not worked up about the upcoming cystoscopy, even though I was thinking about it from time to time.

Tuesday brought a ferociously busy work day and evening, slowing down a bit on Wednesday, which was when I found myself falling into "freakout mode." Stayed as busy as I could, and came home early to take a nap and try to relax. Refreshed myself on the deep-breathing technique and practiced a couple of times on Wednesday night. It really does help a lot. Slept pretty well and was up early for a long, hot shower and more deep breathing. The day was dark, gloomy, cool and overcast - giving a film noir effect. My procedure is almost always late in the mornings, but we were able to be first on the docket at 9AM. The trip down was traffic-free, safely after the morning rush hour into Salt Lake City. Arrived early and signed the consent form, then we were shown to the exam room a few minutes after 9. Urine sample given, the nurse asked me to disrobe (keeping only shirt and socks) and get on the table. Having noted that Dr. Hopkins had taken one patient before me, I asked if I could wait until we were truly "next." She was having none of that, so I smiled, replied, "Yes Ma'am!" and hopped to it. As I expected the wait was about 20 minutes before the doctor came in. I really should buy a piece of interesting art for them to mount on the ceiling over the exam table.

Dr. Hopkins was all smiles and business, noting that he had not seen me in quite a while - this being the first six-month space between cystoscopic exams. After verifying that we already had BCGs scheduled, he saw that I was relaxed and ready, so we proceeded. Happily the scope was hooked to the monitor for me to watch, and this focus really does improve my ability to relax and ignore the procedure. Sixty seconds later we could see that all was clear, and we were left alone. First order of business after getting dressed was to return the saline solution that had been instilled for the procedure, which left my bladder uncomfortably full. First fire-pee episode out of the way, I went to the front desk for my prophylactic antibiotic pill, after which we left the office and walked into the bright sunlight of a stunning day. Even the weather was changed to match the outcome!

Here is where things were different. In the past I had steadfastly refused to plan ANYTHING after a Judgment Day, due to my inability to make a firm commitment with uncertain outcomes. The last two times I planned (and pre-paid) for dinners out with the wine club, and even scheduled some meetings for work. But always with a bucket of disclaimers and cautions. But due to providence (or cosmic convergence if you like), I not only had plans out for the next couple of weeks, I had a meeting to run at work this very same day at noon! My wife dropped me at the building at 10:30 with instructions to retrieve me at 2PM. So rather than retiring to a solitary room to hydrate and recover (takes about a day and a half for cystosocopy), I was into full work mode nearly immediately. I did take a few minutes to dash off some email updates on the ALL CLEAR to those who had requested such, made calls to my parents and brother (who by then had already read the email), and got right to work. The meeting went fairly well, and I was also privileged to share the joy of my good results with various co-workers who stopped by to give cheers and high fives. My take on all of it? I told them, "From the neck up, I feel like dancing!"

I packed the laptop and moved to the home office to complete the work day, with plans to work from home on Friday. In the past I had always taken the day off to recover, and sometimes even the day after. But this time the plan for both cystoscopy and BCGs is very different. The reason is that in January my employer changed their policies and eliminated my bank of emergency sick days. They also converted normal sick days into "personal time" combined with vacations, rewarding their healthy workers and penalizing those with chronic conditions. We now are clearly considered to be a burden both to the corporation and society at large, so sacrifices must be made. And now my exams and BCGs are "personal time off" which is really vacation time, making for some of the worst vacations ever. For those who have not noticed, the economy in the US and Europe is awful, and despite the continued reassurances of the media, there is no evidence in real life to support the contention that recovery is here or coming soon. Therefore companies are reducing liabilities and expenses, knowing that options are slim for employees. I suspect they may feel some pain if the economy ever improves, but for now we shall play the game by their rules. What this means is that I had to do some small tasks and monitor email for the rest of the day and Friday.

Even though there is not much real physical trauma from which to recover, I am always amazed at the mental toll. The fiercest concentration was required to complete simple tasks, and the effort to hold coherent conversations was shocking. I believe I was able to muster enough energy to get things done, and slept well both nights. Today I feel much better, pretty much back to normal. Even though I have been through this and worse before, I am still amazed how difficult it is to recover mentally. Having to do productive work immediately afterward was taxing beyond my greatest expectations. I have also moved the BCGs from Thursday mornings to Fridays. My reason for selecting Thursday was that the doctors would be available on Friday should there be any trouble. But as a BCG veteran, there is no point in wasting a vacation day now. So Fridays will be BCG days and Saturdays will be flu-like symptom recovery day. The big drawback here is that Dr. Hopkins only works in the office on alternate Fridays. So we selected a schedule to go Friday, Thursday, Friday. But he is taking that middle week off, so I elected to go with PA Liz again and do the middle one on Friday. Hopefully it will not be as comical as the last time she substituted, the details of which were not really disclosed. Waiting for the book deal, I guess.

The bottom line is this. Two days after a clean report and now officially 27 months cancer free, I now really believe that I have crossed the two year bridge. While the bladder cancer is still very likely to recur once or more in the next eight years, it is highly unlikely to be very severe. Life is really looking up, and as always, GOD IS GOOD - ALL THE TIME.

Below are a few photos from the motorcycle ride through Idaho and our attendance at the WeSTOC XV rally. Click to enlarge any of them, and see if you can spot the deer in the first one!

Judgment Day #7 - Cancer FREE 27 Months (and counting) - September 9, 2010

In my mind this was a bigger milestone. Unfortunately my mind is a little bit mushy, post-climactic stress syndrome or something. Details on the Judgment Day, the cystoscopy, the significance, the outfall, the prognosis, and the next steps are forthcoming.

Stay tuned to this space!

Updates From Around the World - April 24, 2010

Bladder cancer continues to emerge to be discovered in new people every day. Judging from the people who hits this blog and the links they investigate, I surmise that most of you seem to be finding potentially helpful things out in cyberspace from my links, discourses, rants and so forth. On occasion I get some feedback indicating that this is the case:
Dale G. comment: I just wanted to say thank you for your blog. I just learned this morning that I have bladder cancer, and there is such a tremendous amount of information here - it's very helpful to be able to read about someone else who's gone through this. Thank you for sharing your experiences.
Chris S. comment: Thanks for the blog. Will start this in a few weeks and after reading this I have no worries. Best of Luck!

Some even list their entire lifestyle, giving me some encouragement. This was how one lady signed a note alerting me to an incorrect link (which I was happy to fix).Thank you for your web page.
Jenn Charlene J.
T1G3 Non-Invasive
TURB
BCG 5 of 6
Budwig FOCC
Beta Glucans
Green Tea
Minimized meat/organic chicken
Organic veggies

So I will continue here as long as it seems to be helpful to you out there...

As for our regulars, we have some March/April updates.

HK in Toronto had his cystoscopy on April 6 and was found to be all clear. This news was a welcome relief, as HK is one of the few unfortunates that absolutely could not tolerate the BCG treatments. He had unbearable pain which endured for months afterward. The Canadian doctors finally determined that he has a condition called horseshoe kidney, which basically means that he has one large, connected kidney rather than two. Most likely the two kidneys did not separate before birth, and continued to grow as a unit. The doctors don't think the condition causes his pain, and have prescribed some pretty heavy drugs for enlarged prostate and inflammation. In any case his life now continues at a state of reduced misery. We can all be thankful, and should hope and pray that his cancer does not recur. Not sure what treatments they will consider instead of BCG, should he have a recurrence and another TURBT surgery.

Robert S. in New York continues do well, despite the disadvantage of receiving his care from the smartest doctors in the universe at Memorial Sloan-Kettering. The problem with the smartest people is that they presume there is nothing more to learn, so Robert (even though he all but demanded it) did not receive a chemo bake post-TURBT, nor will he receive BCG maintenance. The reason given for the latter is that "most patients cancel before three years." By "cancel" they mean they can't tolerate the treatments, not mortality! While this was certainly true 20 years ago, reduced frequency and dosage treatments have been the norm since at least 1999. So while the geniuses at MSK don't have "sufficient data" in their own little bubble, plenty of peer-reviewed, published evidence is available in the US. I suggest we may need to view Wall Street doctors with the same skepticism we now use for Wall Street bankers. In any case I am glad Robert is spared the misery of the treatments, and I hope he is spared any recurrence of bladder cancer. As of April he is 16 months cancer-free, and counting!

Robert passes on the following tip for those using the Budwig Flax Oil and Cottage Cheese (FOCC) diet. "Learned a trick for the cottage cheese cocktail. I buy the pre whipped Friendship cottage cheese--drinks up the flax seed oil really nicely and seems the same as when I use the hand held blender-without the aggravation." It turns out that pre-whipped cottage cheese is only readily available on the East Coast of the USA, so the rest of us will have to continue to make our own!

Ed B. in Washington State reports ALL CLEAR from his cystoscopy on March 24, marking six months and counting... He has some enlarged prostate and elevated PSA to deal with, and for now the doctors are prescribing dietary approaches rather than medicine. He is also battling COPD/emphysema. Ed admits that a lifetime of smoking and poor diet may have had a contributing effect. "I was in the Air Force for thirty three years and can still remember the free Old Gold and sometime Lucky Strike cigarettes that the Red Cross gave us. You probably know that there is a correlation between tobacco use and bladder cancer. Well the lung issues are many times more that correlation. So I have both." We know that it's never too late for a radical lifestyle change to be effective, so we are sending positive waves in his direction!

David F. in England was shocked to have a tiny tumor discovered on what was to be his final hard cystoscopy (with general anesthesia) and biopsies. The good news is he returned home on the same day of the procedure, for the first time ever. The bad news is that he was ready to be "finished" with everything but routine annual flexible cystoscopies. But now more BCGs and biopsies are probably in his future. As usual with the British system, he has to cool his heels for a couple weeks before they can see him, even though the follow-up appointment was scheduled "sooner rather than later." The tumor was removed and presumably sent for analysis, so there is a chance that it was not cancer. We shall all wait together to see what the consultant says.

Asya in California had all of us men convinced that we were wimps and whiners after her TURBT experience. Sadly, after convincing herself she was cured after 6 months, she had a recurrence at 9 months. Had another TURBT and handled all with aplomb again. We hope for the best for her as her cancer-free clock was re-set on March 12.

Jeff in the UK reports, "Thought I'd let you know the consultant told me today that the BCG has worked and that I am clear. I'm due to start boosters next week. A problem occurred midway through the BCG treatment in that one of my ureters was blocked by scar tissue, from earlier treatment, and I had to have a stent fitted. It only adds to the discomfort. They are looking at options to enlarge the opening and I should have something done before Christmas. Anyway I thought I'd let you know that all the 'discomfort' has been worth it, for me at least."

And Larry in St. George, UT (practically a neighbor) left a comment on a very old post, so most of you probably did not get to see it. I thought it was worth re-printing here:

Thanks for the blog and your story which makes me feel I am not the only one going thru this. After surgery in August to remove the T-1 aggressive tumor which had not invaded the muscle wall, I followed a 8 week regimen of BCG followed by a scope. Everything was OK. In the interim I had my annual physical which showed a spiked PSA. My urologist was concerned but said BCG sometimes has an effect on the prostate. At that point I thought I had bladder cancer AND prostate cancer. Before we started the 3 week treatments, I had another PSA which was normal. Then I started the 3-week series in Year 1.
The first scope a week ago, showed the tumor had returned. The urologist cut a specimen, told my wife to expect another TURBT the following week and asked to see us three days later after he received the pathology report. We were scared out of our minds. I'm sure there were a lot of prayers were said in my behalf when close friends and family learned. When we returned to the Dr's office, he told us that there was no tumor!! It was a small amount of the BCG materials that had stuck in the bladder. He assured us there was no danger of sepsis. Thanks be to God! We went from scared to giddy. Now a week later, I have decided that as much as I hate the BCG treatments and the way they make me feel afterward, I welcome them as the only alternative.
I have never been a person who puts much stock in "karma" but.....the rest of the story. In the 1980's, I was the first employee of a non-existent cancer center at West Virginia University Medical Center. My goal was to raise enough private funds to convince Sen. Robert Byrd to make large amounts of federal aid available to build the center. I did what I was supposed to and Sen Byrd delivered. Now the Mary Babb Randolph Cancer Center is a large fully functioning center. Even in the early days it focused as much on research as it did on treatment. A young researcher joined us in those first years. My job at that point was to understand enough about cancer research that I could translate it into layman's language for potential donors. This young researcher was doing something with bovine udders and it had to do with bladder cancer. All this was still in my faint memories 25 years later when I started researching what BCG was and how it worked. Yes, Dr. Don Lamm was that researcher. My urologist states that he is the world authority on BCG. So what goes around comes around...positively in this case. Thanks for the opportunity to share.

So we have good news and not-so-good news, but all are looking forward to positive outcomes and a cancer-free future. Stay tuned to this space for further updates.

Judgment Day #6 - Good News Plus Double Bonus! - March 4, 2010

"It figures," were my thoughts yesterday as I noted the forecast for Thursday, March 4 was cold and rain continuing throughout the weekend. Mid 40s (7 C) with chill-inducing humidity plus some heavy winds. Dreary and unpleasant weather to be sure, and appropriate for a Judgment Day - my sixth since having the bladder cancer removed via surgery (a second time). While I have not consciously dwelt on this event for the past two weeks, uncertainty has eaten at my mood subconsciously, giving me a shorter fuse than usual and a shift in attitude evident to all. For some reason I was pretty confident last time, in early December, but not so much this time. I had some phantom pains around the bladder area (normal), and some real soreness in the past week (unusual). Sometimes knowledge is power, and sometimes knowledge (or perceived knowledge) just sucks. I suspect that knowing there were two more judgment days before reaching the critical two year mark was at play - if bad news is to come, now or next time (in June) would be the last chances for it to be automatically VERY BAD. Some cheating on the diet during vacations and weekends was other unwelcome knowledge to add to my sense of foreboding. Mentally I kicked myself for every supplement blown off or cookie sneaked. All to late now. Clinical odds of recurrence today are still at 50/50, so it's a toss of the dice in theory. The thing about clinical data is that they are based on averages. A single data point can be anywhere in the probability range. As a single data point, the 9 things I was adding could improve my odds - even if no peer-reviewed "proof" is close at hand. I could only hope and pray.

If you ever doubted it, let me assure you right here that God has a really good sense of humor. I slept in and took care of emails and comic reading, showered and glanced out the window at the expected gray skies. Slowly made my preparations and noted the location of the stored supplies for BCG, should I need them. Got into the vehicle as my wife drove us to the date with destiny at the end of a flexible medical cystoscope. The very first thing I needed as we set out was my brand new sunglasses, because the day was bright and sunny with blue skies and white, puffy clouds. Not the pure crystalline blue of a summer sky - more of a slate-blue winter sky - and very pretty and cheerful nonetheless. There were clouds on the mountaintops providing fresh snow for the skiers, and the rest of the scene was very pleasant. My mood improved minute by minute.

Traffic was sparse and speed enforcement was in evidence EVERYWHERE. No reason for it that we could see, other than the weather report and insatiable need for revenue in every governmental agency in this country (if not worldwide). People were being circumspect, as there were far more police fishing than fish caught that we observed. The trip to the doctor's office was uneventful, not impeded by traffic, construction, or weather. We arrived about 10 minutes early. Kathryn noted the absence of cars in the usually-full lot, hoping that it meant there was not a big backlog to delay my appointment at 11:30. After the usual signatures on paperwork, plus another new form to fill out in honor of the year 2010 - providing information they already had four or five times again. We were shown to the back right on time. There was one victim ahead of us in the scope room, so I finished out the new form while we waited in a nearby room.

I was happy to provide the usual urine sample, and we were quickly shown to the cystoscopy room. When instructed to disrobe in preparation, I was assured that I was indeed next - so I complied. Sure enough Dr. Hopkins popped into the room inside of 10 minutes, a new record! We had noted that no TV was hooked to the scope, because apparently his more senior partners had the priority on it. I was sorry to learn that, as the TV makes it MUCH easier to NOT concentrate on what's being done to you. Still the procedure was quick, and Dr. Hopkins announced "You're Good!" in less than sixty seconds. He prefers the optical scope over the video one, and he is lightning fast with it. Redemption from the impending judgment improved my outlook - like a snowstorm in a very hot place indeed.

While the great news was still sinking in, he announced BONUS #1 - a total surprise to us. "This makes almost two years for you."

"Just over 21 months!" I replied. "But who's counting?"

After sharing a laugh, he continued, "That's close enough in my book for two years, so I don't think you need to come back in three months. Let's make it six. Unless you prefer to come back sooner."

I assured him that I did not, and I was quite pleased to contemplate 5 months with no medical molestation of my private parts - after, of course, the three BCG treatments already scheduled to begin next Thursday. This happy news erases an inspection date in June that I was anticipating, and will now clears the spring and summer for all kinds of possibilities!

Dr. Hopkins ducked out of the room, and I had no sooner stood up from the table then he came back in, having forgotten to do a prostate DRE in conjunction with the PSA blood test he had ordered me to do. I was pretty confident that would be OK, as my PSA is a very low 0.8. The doc hates doing these as much as I hate getting them, so he was quick about it. That unpleasantness aside, we parted company until next week. I already mentioned Bonus #2 in the last post, but it is worth repeating here. A month ago I had my first colonoscopy, a requirement for turning 50 years of age. That inspection was so good that the surgeon said I did not need a repeat for TEN years instead of the normal 5.

I say all of that to communicate this: while there is still significant probability of recurrence in the next 8 years, the downside of it is not nearly so bad now that the "2 year" hurdle has been passed. I could even cautiously start using the term "remission" now, but it pays to be vigilant. While not statistically significant, all of these good results are at least heuristic evidence that the extra things I am doing to help the doctors fight cancer are working - either singly or collectively. Not only has there been no recurrence, but also my general level of health has improved. So I am well encouraged to continue! Having faith in God, avoiding chemicals and bottom-feeders in the food chain, focusing on fresh, natural, and organic foods and vegetables, and eating smaller portions of animal protein are the kingpins of the plan. Throw in some vitamins, supplements, and exercise (ugh) rounds it all out. Taking care of myself plus the grace of a loving God are bringing on the best results. I will bend anyone's ear about changing a lifestyle to change a life from end to end (pun intended). Refer to this post for details on 10 things I recommend to fight any type of cancer - and these are also good to prevent from getting cancer in the first place!

As for the promised rain? It is now here, accompanied by thunder, lightning, winds, and the whole Judgment Day panoply of special effects. And all of it makes me glad! Stay tuned to this space for details on the upcoming BCGs, a blow by blow (or pee by pee) accounting with charts and graphs as usual. In the meantime, I challenge you all to have an awesome summer, because I certainly plan to do so!

New Year, New Calendar of Treatments - January 1, 2010

First off I want to wish all of you (mostly anonymous) readers an optimistic and joyous new year for 2010. Whether you have cancer or you are supporting someone who does, your own positive attitude is a key element under your control that will help everything else work better and pave the way for staying ahead of bladder cancer, or any cancer. Do not accept that cancer is a death sentence, a done deal, but accept that working together with the doctors on the remedies they know PLUS doing some additional things can indeed keep the cancer at bay. And all of this is leveraged even more by positive attitudes. Read more about the importance of attitude here.

One thing I did after my last cystoscopy and all clear report a few weeks ago is update my treatment calendar. I initially published this calendar almost a year ago. And while it helped me to visualize what lies ahead, and many of you have looked at it, I am forced to admit that it is really difficult to interpret. Even Dr. Hopkins' eyes glazed over when I showed it to him. So I decided to re-work it and make it more clear. The thing that makes it difficult is that we have to line up three timelines: the cystoscopy schedule from Dr. Hopkins, the BCG maintenance schedule from Dr. Lamm, and the CT scan schedule from Dr. Hopkins. Complicating this fact is that the BCG and cystoscopy are driven from different start dates.

Here is Dr. Hopkins cystoscopy plan that he outlined to me verbally: Visual inspection via cystoscope every 3 months post TURBT for the first two years, every 6 months for the next two years, and then annually for life - as long as no cancer is detected. Along with each scoping we will do a urine cytology test. The start date for these is late May, 2008, when I completed my second TURBT. Additionally he requires a CT scan 12 months post TURBT then every 18 months. Dr. Hopkins is always quick to point out that there is plenty of leeway in these timings, as there is nothing requiring precision in this other than convenience for human beings to use calendars.

Here is Dr. Lamm's BCG maintenance schedule for me, to which Dr. Hopkins has agreed. After initial 6 BCG, maintenance series of (up to) three at 3, 6, 12, 18, and 24 months, annually to 6 years, then at year 8, 10, and 12. Since the initial 6 BCGs were 2 months after the TURBT, this gives a slightly different start date.

Given all of this, I created a different timeline for cystoscopy, BCG, and CT Scans - forcing them a few weeks now and then to line up properly. And everything pretty much works until the year 2015. Uncharacteristically for me, I am not going to worry about that for a while...

So here is the treatment calendar as of today. Am I depressed that BCG continues until 2020? Not at all - I look forward to being alive and fine at that time, and a bottle of resveratrol-laden red wine to celebrate!

Click to enlarge!

Judgment Day #5 - ALL CLEAR - December 3, 2009

It was a cold, clear beginning to Judgment Day 5 with 9F (-13C) reading on the outside thermometers this morning. As usual I had mostly cleared my schedule for the day before, and had a quiet evening at home. Also usual is the battle with trepidation, all confidences in God and my own treatment regimens aside. As David F. pointed out in his blog post here, the brain is supposed to be your friend, but it will play funny tricks on you when cancer is involved - running through every scenario of doubt or disaster. One thing that made it different this time is that after four of these judgment days accomplished with good results, I was much better able to imagine and visualize a positive outcome scenario. For the first three I had stubbornly insisted on not planning ANYthing at all for after the judgment day. For the last one, I planned a dinner outing a week following - a big leap of faith for me.

For this one I cleared the schedule yesterday and today, but I actually went to work part of the day yesterday, and I have a meeting scheduled for 8AM tomorrow morning. Plus dinner outings, Christmas parties, and the lot all planned out for the next few weeks. Given the knowledge that a good outcome was possible, if not theoretically probable, I was able to focus my energies yesterday on working the best case scenarios. Sure, the old brain, left to its devices, jumped to some bad scenarios, but I was able to simply focus on tasks at hand to stay on the positive path. I kept myself busy with household chores, internet research, and even planned a celebratory dinner out tonight - which will now be executed. I even toyed with the idea of picking out a wine from our newly refreshed supply, but decided to leave that happy task for this afternoon.

All of this plotting worked well, and I dropped into bed by 11PM last night, falling asleep quickly. I slept soundly until 4:45AM, and that was that! Spent some time reflecting, spinning scenarios (mostly good with some bad ones in for practice), and then got up early. Resumed planning things based on a positive outcome, watched a little television, and practiced my deep breathing techniques for the uneventful hour drive to the doctor's office. We arrived 10 minutes early and signed in without issues - other than to be informed that Dr. Hopkins was running a bit late - quite normal for this time of day (11AM). We were shown to the exam room by Margaret, his usual assistant for these scope procedures. After faithfully delivering a urine sample, I also said hello to Gloria, our favorite assistant for BCGs. Margaret made everything ready, noting that the camera was available today - much to my delight. She suggested getting undressed and hopping on the table. Experience has taught me to ask if we were next. Margaret admitted that there were 3 ahead of me, and agreed to notify us when I was next. This allowed me to spend most of the wait time sitting and dressed rather than lying half naked - a marked improvement in the total experience.

While we were waiting Gloria came in and showed us her daughter's 8th grade school photo. Beautiful little girl - she has apparently told mom that all the boys in her class are stupid and immature. Certainly true, and unlikely to change in the next several years (if ever)! We exchanged more pleasantries and soon it was announced that I was next. A short wait on the table and Dr. Hopkins came right in and got to work. Kathryn and I both watched on the screen as the scope went where it was designed to go and showed us everything inside. Looked perfect to me, even better than several months ago. The doc does not like the tv scope as well because everything is upside down - "The bottom of the screen is not the bottom of you..." But he managed well and was all complete and gone within 3 minutes of his arrival. He cleared us to schedule the next cystoscope and BCG next March, putting a crimp in my March Madness

All scheduled and booked and back home to inform close friends via email and other close friends and strangers via this blog posting! On the schedule for this evening is a nice dinner out for the two of us with a great bottle of wine (or two)! If you ever find yourself near Salt Lake City, a wonderful and reliable choice of restaurants is Meditrina. Located conveniently outside of the downtown area and right by the minor league ball park, it is one of our favorite places to go for dinner. Maybe we will see you there tonight or some time soon!

The ALL CLEAR report today marks 18 months now cancer free. Cysto and BCGs at 21 months in March, and the biggie two year point next June - after which I can CAUTIOUSLY begin to use terms like "remission" and "survivor." That seems far in the future still, and statistically that may be the case. But I know that statistics consist of older people who have no hope or faith and do only one or perhaps two of the ten things I am pursuing for treatment regimens. So my confidence grows, despite a feeling of unreality that always seems to happen after these inpsections. And I will be peeing fire for a day or two just to keep me honest. And one other thing I know, GOD IS GOOD - ALL THE TIME. basketball plans. Sometimes cancer is damned inconvenient...

Lyrics by Don Moen

If you're walking through the valley
And there are shadows all around
Do not fear, He will guide you
He will keep you safe and sound
'Cause He's promised to never leave you
Nor forsake you and His Word is true

God is good all the time
He put a song of praise in this heart of mine
God is good all the time
Through the darkest night, His light will shine
God is good, God is good all the time

We were sinners - so unworthy
Still for us He chose to die
Filled us with His Holy Spirit
Now we can stand and testify
That His love is everlasting
And His mercies - they will never end