Year End Updates - Good News Abounds - December 18. 2011

It's been over six weeks since my last post, and no news (from me) is good news.  It means that life is adjusted to the new "normal," and that Bladder Cancer is not a daily concern. It is good to be more concerned with work, holidays, family and friends than with health.  That said, the new normal includes the looming presence of cancer recurrence and awareness about possible exposures to triggers - especially in food.  Even in the holiday season when "cheating" on the diet is more frequent, I still think about exactly what I will allow myself to cheat on.  Remembering to faithfully take my vitamins and supplements is also more difficult, and I am thankful that I manage to remember most of the time.  I have resumed exercising after 2 months off for BCG and recovery - more time off than was physically necessary, but I had to get mentally prepared to exercise again.  And I still don't enjoy it one bit!


I was contacted recently by Ranveig Røtterud, a lady from Norway who has been dealing with Bladder cancer for some time.  She has started a blog (entirely in Norwegian) to raise awareness and begin sharing information, which I agree is a bit rare concerning this very personal disorder.  Even on the internet where everyone seems to write as if they are invisible and invulnerable!  Ranveig has noted the same reluctance for public speech and information sharing in Norway, and is staging a one-person battle to correct that deficiency.  Her informative blog is called Den gule bloggen which translates rather delightfully as The Yellow Blog.  She has access to some different research than we do, and certainly has a unique and useful spin on bladder cancer.  Do be cautious when using the translated version.  Google translate does some wonderful work, but frequently you will have to use your imagination and ingenuity to work around it's failures.  For instance, I sent her an email in Norwegian that used the abbreviation BC for Bladder Cancer.  Ranveig reported that the Norwegian version came across with "Before Christ."


I also got a note from Alexandra whose father, Daniel, recently passed away after a 14 year battle with Bladder Cancer.  She writes a blog that focuses on dealing with death from a secular viewpoint.  Her musings (which are not for the faint of heart) can be found at http://itsnotmorbid.wordpress.com/

I also had good news from the folks in my Bladder Cancer "fraternity" that keep in contact.  Clear cystoscopies and good news from Ben in Louisiana (Mobile Biohazard Man), HK in Toronto, Ken in Virginia, Sebastian in Buenos Aries, Roy B., and Brian in Atlanta.  Robert S. had a scare, but biopsy came back all clear on him as well.  Keep up the diet, exercise, and good attitudes for more success in the future.


Wishing all of you a Happy Christmas and New Year in 2012! Enjoy the photo below from a friend in Paris.


 

Dealing with BCG - Lessons Learned - November 5, 2011

I promised this post over five weeks ago, so I am tardy.  It does point out the first lesson learned:


1) After you get the routine down and have both experienced and dealt with the maximum side effects (which does vary greatly from person to person), it is possible to completely forget that you just had a BCG maintenance series after about a week.


I could almost forget that I have bladder cancer, but it is a large, looming presence that is always in my mind, and possibly could come back to my body at any time.  Believe it or not, that's a GOOD thing, especially when wrestling with staying on a diet, remembering to take supplements, or even motivation to exercise.


While there is a progression of symptom intensity, there is an eventual decrease of the maintenance treatment frequency.  This combination of offsetting factors brings us to the next lesson:


2) At some point you reach peak side effects, and they do not get noticeably worse or better after that.


 So once you are "over the hump" in your BCG maintenance, it becomes a nuisance rather than an increasing horror.  This is also GOOD NEWS.  For some it is earlier than others.  I note that my urinary side effect timing, duration, and severity have been nearly identical last time and 12 months prior.  18 months prior was not so bad as those, and so forth going back.  While it is important not to extrapolate from a single data point, I really think the one year in between provides enough recovery time to offset the BCG intensity increase.  A side note, non-urinary symptoms (headache, body aches, malaise, etc.) are still highly variable, probably due to errors on my part.


3) Hydration is good, and a lot of hydration is better, but too much hydration can cause other problems!


One big difference between post TURBT (or biopsy) hydration, and post-BCG hydration is that the BCG for me causes a severe loss of appetite.  You need hydration after surgery to continually flush the area, which is a cut, burn, or abrasion inside the bladder.  This hydration combats the formation of scabs and keeps the area clean for recovery.  Do keep in mind that urine is sterile, unless you have some sort of infection.  For BCG, the hydration serves to flush the BCG out of the bladder (which happens pretty quickly) and also to keep the bladder clean and blood flow active, as the body now believes it has an infection and sends helpful natural defenses to deal with it.  Early self-experimentation showed that slacking off hydration made the urinary and non-urinary symptoms more severe and long lasting, so I made a commitment to always force fluids and try to super-hydrate.  After surgeries I almost always had soup of some type and whole grain toast, which provide ample electrolytes.  I do have soup for lunch before the BCG appetite loss begins, but late in the evening I am suffering from electrolyte depletion, not having any food or electrolytes since lunch and having washed through several gallons (yes, I said gallons) of hydration since.  After surgery you eat normally and therefore won't experience this problem. 
 
The bottom line is that the headaches, body aches, and general malaise actually INCREASED if I over-hydrated, making the day after BCG in some cases even worse than the BCG day.  Getting the right amount is vital.  Fortunately there is a wide range and it's easy to stay within it.  So how much is enough, and how much is too much?


3) For an adult male, one should target between one and two quarts  (or liters) per hour for the duration of the BCG handling period and at least two hours thereafter (10 hours total post-instillation). 


4) If you are close to the high end of that range, you need to take in electrolytes in the form of a sports drink. 

Do avoid electrolyte drinks that are high in Vitamin C, which travels quickly to the bladder and will add irritation to an already over-stimulated area.  I do have lemonade, but very light on the lemon, and mixed in with plenty of iced tea (room temperature tea, really) and plain water.  For electrolytes I selected Gatorade brand.  One problem with ALL sports drinks commonly found is they are loaded with sugar, which feeds cancer directly, so they should be avoided entirely after surgeries when hungry cancer cells may be floating about freely, looking for a place to take root and grow.  But for BCG, you are theoretically cancer free, and it's less of a risk.  Of all the commonly available sports drinks, only Gatorade uses sucrose (table sugar) rather than high fructose corn syrup, which metabolizes more slowly but actually feeds cancer more efficiently. Read details HERE. I found that pounding a quart of Gatorade every now and then produced a stomach ache, so I keep a couple of quarts on hand and sip them throughout the 10 hours.  One more the following morning also does wonders!


5) While one could easily handle BCG treatments solo, not enough can be said for the positive effects of a loved one or friend to help get you there and back, make sure the hydration and electrolyte supplies are near at hand, and generally be sympathetic.


Positive attitude is strongly correlated to improved health (Link HERE), and those blessed to have help through this bladder cancer ordeal are forever grateful.  Public thanks to my wife who has patiently filled in the gaps and fought the good fight along with me.


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!


Bladder Cancer Overview from M.D. Anderson - August 31, 2011

Deborah Thomas from M.D. Anderson Medical Center in Texas sent me the following podcast about Bladder Cancer. It is just under 14 minutes long and is a good overview of the facts and statistics surrounding bladder cancer, diagnosis, symptoms, and treatment.


I think you will find it well worth your time!


Oh Canada! - July 16, 2011

Wow! It's been 6 weeks since my last blog post. Slow activity on the blog is good news. Bladder Cancer is not impacting "normal life" nearly as much as before. Summer is finally here in the West. Although the southwest US has been sweltering, the West has been cool and rainy - very unusual. For the past few weeks it has been a mix of work and play for me. Work, of course, is work - hardly worth mentioning except for the fact that I can really focus on things at work rather than having to plan every commitment around the next doctor visit or whatever. Other than being thinner and healthier with more energy than before diagnosis, normal life is pretty much back to normal.

My weight loss diet is progressing OK with 6 weeks more until I do the final assessment. My goal was to reduce body fat by at least 10% and drop to waist size 34 in six months. I am not there yet, but have lost over 20 pounds and now comfortable in size 36 pants. So it COULD happen. Feeling good and staying on the plan. More on this after the 6 month assessment.

I have had contact from a few new people, and many of our regular "fraternity members" have checked in with ALL CLEAR on cystoscopes, including my cousin Rick in Texas. A new idea comes from Jon M. in Massachusetts, who worked with his wife's osteopathic doctor to come up with a diet modification plan. The doc recommended food sensitivity testing (different from food allergy testing). After donating about 6 vials of blood, he received a report on 30-40 foods. Jon continues: "I am highly sensitive to dairy proteins (whey/casein) and moderately sensitive to Oats, so I cut those completely from my diet about 3 weeks ago. Perhaps not by coincidence, chronic pain in my left shoulder is almost gone (I can sleep on my side again!). Most mainstream doctors only test for food allergies, not sensitivities." So this could be something for all of us to consider! I also heard more from Sebastian, aka Oldman the Calligrapher, from Argentina. Thanks to Google Translate, we have been communicating quite well despite not sharing much common in language. Sebastian is also an engineer (as is his wife) and we also share upcoming Judgment Days in September and an interest in diet modification. From Sebastian:

Less than a year ago we were with my wife in your country, traveling on tourism. We visited the west coast, where we met wonderful landscapes and cities. If I had known what awaited me, would advantage to visit the famous Dr. Lamm. For my story, you can count on my name if you want. In addition to treatment I started drastic changes in my habits. The key is diet. I've studied the subject, including anti-cancer foods and diet that produced is in the attachment. It is adapted to my tastes and habits of my country: light breakfast, strong dinner, can not completely give up meat. It is quite healthy and balanced. I also need a free-day. I'm greedy and I gained some weight by anxiety.
Even though it is not a formal recommendation, the curious may see Sebastian's diet plan by clicking on the picture below:



HK in Toronto continues to test all clear and avoid BCG. He has had a lot of trouble tolerating any procedures or treatments - by far the most sensitive of our fraternity. But HK has discovered a new resource for us all to share. Canada has rolled out a helpful website called Bladder Cancer Canada with doctor lectures, interviews, support groups and the like. HK has been attending meetings in Toronto, and he finds the group to be interesting and informative.

And speaking of Canada, it was my (somewhat expensive) privilege to spend a couple of weeks there zooming about British Columbia and Alberta on the motorcycle for WeSTOC XVI. We stayed one week in Nelson, BC, a gorgeous place where the movie Roxanne (with Steve Martin and Darryl Hannah) was filmed. We found the country to be wonderful, the food excellent, the people first rate, and the alcohol prohibitively expensive. This latter fact really cut down our drinking and associated weight impacts, so it was all good! We saw mule deer, white tailed deer, elk, moose, eagles, hawks, bighorn sheep, mountain goats, coyotes - pretty much everything but bear. A bit annoyed about that, as most of our friends reported multiple black and grizzly bear sightings. We covered over 3300 miles and explored some new to us landscapes and scenery. Enjoy the route map and selected photos below...

(Click on any photo to enlarge.)











Amazing BCG Story - June 4, 2011

Many of our regular "frat members" provide me updates from time to time that their cysto or CT scan was clear, and BCG is done, etc. But our latest frat member, Ben F from Louisiana, things have been interesting to say the least! Like many of you readers he did as much research as he could tolerate after he was first diagnosed, and even found my humble little blog here. He sent me a couple of notes thanking me for the tips and advice, and had a couple of questions that I answered as best I could. One thing he had done was to choose a skilled and experienced urologist in New Orleans, even though it was a long drive from his home. He went through two TURBT procedures and his diagnosis was confirmed as T1, high grade. Like me, he wants to keep his BCG dosage as high as possible for as long as he can tolerate it. So far, so normal and routine. But since his doctor was a 2.5 hour drive from home, he decided to find another urologist at the Ochsner Clinic in nearby Baton Rouge, Louisiana, only 30 minutes from his home. For those unfamiliar with Louisiana geography, New Orleans is near the mouth of the Mississippi River where it empties into the Gulf of Mexico. Baton Rouge, the state capitol, is about 100 miles upriver to the Northwest. Because of the omnipresence of water and swamps in the area, few roads go very far in straight lines, making circuitous routing a necessity. Bottom line was the closer location to home made a lot of logistical sense. Since BCG isn't new therapy or particularly difficult to administer, Ben made the move and scheduled his first BCG (of 6) to begin on April 12 of this year.

But when Ben showed up for the BCG, the obligatory urine sample revealed the presence of an infection, or so he was told. So he went back home with a week's worth of Cipro. Mentally this was a huge letdown, as Ben had prepared himself well by reading about my experiences and even doing similar overkill to set things up. So Ben amused himself in the week of delay by researching Cipro, only to find that it was not recommended and would probably interfere with BCG. He made a few calls to the new doctor's office to ask about it, only to be told they would do some research. No feedback at all. Finally the day before the next treatment he was able to insist on getting an answer, which unsurprisingly was that he was correct about the Cipro. The BCG would be delayed by ANOTHER week! To add to the insult, they also reported that his infection culture did not show any growth, meaning that he actually did NOT have an infection in the first place! I have commented in the past that doctors in the US are generally competent and professional, but their staff people are almost universally incompetent. Many have provided affirmation, but this story from Ben is over the top!

Ultimately Ben was able to have his first BCG in Baton Rouge on April 26, and it went routinely. For most of us (except HK in Toronto), the very first BCG is a non-event, and so is the second one. From #3 and forwards things start to get interesting. Ben reports that he had no side effects, and that my relaxation techniques were effective. He also had some stern words with the doctor and staff, telling them he would overlook the poor start, but he expected better care in the future. And that he would be watching and participating. All were in agreement. When he returned a week later, they again reported an "infection" as indicated by leukocytes in the urine sample. While presence of leukocytes indicates abnormality in the sample, it is perfectly normal for post TURBT and post-BCG samples. But the doctor misinterpreted it as infection and Ben was sent home. He visited twice a week for two weeks to get his second BCG, only to be sent home each time. Ben called his urologist in New Orleans and complained. On his next visit, the incompetent urologist in Baton Rouge told him, "I don't know what to do. You should go to New Orleans where they do know how to proceed."

Ben made the two and a half hour drive to New Orleans to get his second BCG instillation from his original doctor on May 13, over two weeks after the first. The good news is that it was also uneventful. The bad news is that the doctor decided not to count the first one in Baton Rouge, so he has to do 5 more. And now for the truly weird part. I asked Ben, "Since you have a 2.5 hour drive home, and you must begin biohazard handling after 2 hours, do you spend the night in New Orleans?" Absolutely not. Ben is truly the Mobile Biohazard Man. After two hours he and his wife pull over to the roadside and conduct Biohazard operations. Ben describes it in his own words:

"We have my SUV rigged like an ambulance...pretty funny to see. We get one of those urinals and big red biohazard bag from doctor's office, bottle of bleach, wipes, gloves, etc. Then when time comes, we just pull over. I will probably get arrested before its all over. Only thing that we need is one of those flashing yellow lights for roof mount."

Priceless. I told Ben that if he would send a picture, I would blog about it. And so here we have it. Ben F. from Louisiana and his mobile Biohazard Station!

Bladder Cancer Awareness - April 30, 2011

Next Saturday, May 7, 2011, will be Bladder Cancer Awareness Day in the United States. One primary activity, sponsored by the Bladder Cancer Advocacy Network (BCAN), will be a "Walk for Bladder Cancer - Leading the way to a cure." The purposes of the day and the walk are simple and clear - to raise "awareness" about bladder cancer in the community and to raise money for BCAN. The purpose of BCAN is equally simple and clear: to foster communication, education, and still more "awareness" about bladder cancer. And perhaps more importantly "to raise funds for bladder cancer research and education."

So what is all this talk of awareness? For myself, awareness is a binomial distribution. Before I was diagnosed with Bladder Cancer I was blissfully unaware of its existence - my awareness was zero. Now, of course, I am aware of it literally every time I need to urinate, every time I eat the foods I should (and avoid ones I shouldn't), every time I take a supplement or vitamin, and every time I look at this blog. My awareness is pretty pervasive - near 100%. And even though Bladder Cancer is the #4 or #5 most prevalent form of cancer (depending on who is counting from day to day), many people are indeed fully unaware as I formerly was.

Contrast my impression above with a survey of more than 1600 people conducted last May in the UK. Half of those surveyed had no idea what the most common cause of bladder cancer might be. A quarter had no idea about the warning signs for the disease, with 18% guessing that the most common cause of bladder cancer was drinking too much alcohol. Only 5% correctly cited smoking and only 1% mentioned using chemicals at work - the factors which actually are main causes of bladder cancer. Industries involving dye, rubber, aluminum and leather are linked to an increased risk of bladder cancer. And the most common symptom or warning sign for bladder cancer is blood in the urine, but only half of those surveyed knew about this.

I digested the information and the messages for quite a while. Now that I am painfully aware of Bladder Cancer, what has changed? My lifestyle certainly is healthier now. But if I did not have it and was equally aware, what difference would it have made? I am pretty sure that without the threat of imminent and painful death, I would have changed nothing in my lifestyle. So that is why I often tell folks that bladder cancer may be the best thing that ever happened to me. Certainly it made my cousin Rick put down cigarettes forever - something he would have told you was not even possible. So awareness makes sense for those that have the affliction, but what sense does it make for those that don't? Some other factor must be hidden beneath all this awareness talk.

Both the UK survey and the BCAN literature point to the same conclusion - one that seems to be a default conclusion for nearly every problem today in western society. Awareness must be raised so that (government) funding can be increased to address the underlying problems. The equation is simple: low awareness = low government priority = proportionally lower government funding. I think it pays to be honest. While education and information and communication are cited as the goals, these noble factors are really the means to an end - to increase awareness and increase proportional government funding. Private funding increases are also welcome, but we all know the real money these days comes from the government. And that's what the awareness is all about.

Please don't think I am trying to rain on anybody's parade here. Given all the odious things that governments overspend money on these days, doing something that might benefit me directly seems like a good trade. I simply think that the goal should be more clearly stated. And given the state of most government deficits these days, spending more on anything at all may well be questionable. Still as common as it is, bladder cancer is not really difficult to understand, diagnose, or treat. As such, many doctors (like my second opinion guy Dr. X) find themselves drawn to fields such as liver or testicular cancer - as they present unsolved problems and intellectual challenges not found in boring stuff like bladder cancer. So guys like Dr. Lamm who pioneered the BCG treatment continue to dabble and experiment with new ideas, but younger physicians tend to focus on more elegant problems. I suppose raising awareness and associated funding might serve as a carrot to draw some of these bright minds into new research areas. And to the degree that funding is moved from something awful, it could be a net gain.

As you can tell, I remain a bit ambivalent about it all. Not because my danger period is past - I shall have scopes once per year for LIFE to remind me, plus BCG treatments until the year 2020 (if all goes well). Just because it seems like such a futile and hopeless game to chase after government money for your favorite causes. But if awareness is your thing, next Saturday is your day. Advertise, walk, donate, pray, write blogs, or whatever. And you may as well reach out to someone you love and give their bladder a gentle squeeze. Trust me - that will get a lot of attention and awareness going!

Bladder Cancer and Diet/Exercise Reports - April 9, 2011

I am a bit surprised at how long it's been since my last update. As I tell most folks, "No news is good news." It is a bit of an adjustment that must be made. During the first 30 months having bladder cancer, learning about it, and dealing with it was pretty much a daily occupation. Now having just passed 33 months cancer free with no BCG to occupy the month after diagnosis, I have until September 8 until I really have to think about bladder cancer again. For the first time since this journey began, I have NOT thought about bladder cancer very much at all. I have had pretty good updates from folks in our little "bladder cancer fraternity" to be thankful for, but somehow it is a bit more distant from me now. Good news is meant to be shared, so let's do that:

Ken H. from Richmond, Virginia reports ALL CLEAR cystoscopy following 6 initial BCGs. He begins maintenance if his next cysto is clear in 4 months.

Ben F. from Baton Rouge, Louisiana has completed two TURBTs and begins his initial 6 BCGs next week on April 14. He has been asking questions and getting mentally prepared. I advised him not to judge the experience based on the first two or three which are pretty easy.

Roy B. in Alabama had clear biopsies in February and clear cysto in March, and so he gets to experience 3 maintenance BCGs in April.

Brian S. in Atlanta, Georgia is having a miserable time recovering after BCG with constant urination throughout the night. Delayed cysto until swelling and pain diminished, but clear cysto and FISH for the first time - now 36 months in to the process.

Ronnie in Colorado Springs reports ALL CLEAR for 11 months now. No BCG maintenance for him, but cystos every 6 months for a while.

David F. in England has nearly forgotten about having cancer, keeping himself busy with starting a new business. But the deaths of many friends and acquaintances from other forms of cancer serve as a near-constant reminder. David and I agree, if one has to have cancer, bladder cancer is a pretty good option. Still David notes the effect his cancer experience has had on his day to day life and modus operandi. Some good and some bad, and all difficult to grasp or explain.

HK in Toronto has had several months off after a miserable reaction to BCG. He has a cysto coming up next week on Tuesday, April 12, and he would appreciate all your prayers and positive support.

The real warriors are Joe and Heidi in Washington state. He has bladder cancer and she has breast cancer, and they are dealing with both constantly. Joe also reports burning and urgency as much as 2 weeks after his final BCG, which is a bit rare and unfortunate, but not "out of family" as symptoms go. He also has a cysto next Tuesday, April 12.

Turning back to what's up with me, as I note that blogs are in general a narcissistic outlet, most long-time readers are aware that I made several quite radical dietary changes - increasing veggies and reducing meat to a 2:1 by volume ratio, going with organics and all natural foods, eliminating pork and shellfish, eliminating (mostly) sugar and simple starches, eliminating all sweeteners except stevia extract, eliminating all preservative-containing foods, eliminating deep-fried foods, adding vitamins and supplements, and even quite reluctantly adding routine exercise three times per week. My weight dropped dramatically, then stopped and increased back to around 230. Not nearly as bad as before cancer, but still visibly overweight. Minor tweaks in the exercise routine made it less miserable and almost bearable, but not something I enjoy or look forward to. Net effect has been to hover around 230 pounds (16.4 stone) since Christmas of 2009. Although there was considerable weight gain in March as we prepared to do something new. So the diet worked to a point, and I believe it has had a significant corollary contribution to my improved attitude and cancer-free state. But clearly, while it has made me less fat, it has not made me thin - not that thin was ever the primary goal.

Anyone who has tried diets knows they always work quite well as long as you stay on them. But cheating inevitably happens, and always leads to more cheating, which ultimately leads to dumping the whole diet in frustration.
We are trying a new diet, or eating pattern, that addresses this key failure mode. The diet is VERY strict for six days per week. Limited types of low-glycemic carbohydrates are permitted, no dairy or cheese, no starch, no sugar, no artificial sweeteners, plus all the no-no's listed above (for cancer purposes). Almost like a super-strict form of Atkins. Given all the restrictions, there is not a ton of stuff left to eat. How could anybody survive this for long without cheating? Let me tell you about the seventh day. Day 7 of each week is a built-in cheat day. On Day 7 you are permitted to eat ANYTHING in ANY QUANTITY without limits. I still follow the cancer no-no's (except for sugar and starch) on Day 7. But everything else is fair game. Insanity you say? Of course, but insanity for a purpose.

So how does one survive during the week of six days? Day 1 is easy, having indulged nearly every food fantasy the day before you feel a bit "hung over" and don't want anything bad. The first week I did not eat at all until after noon. Day 2 - 6 you will have various desires and cravings that can easily be fought off because of two simple factors:
1) You eat quite a bit of the allowed foods - four meals per day, and you are never really hungry
2) Anything you crave you CAN HAVE within a few short days
I make a list of things I want during the week to eat on Saturday, my Day 7. I quickly found that what you WANT to eat on Day 7 is quite a bit more than my capacity to stuff it in - a shock to anybody who has seen me pile in the food.

What about the hated exercise? Still 3 days per week, but the exercise part is also quite simple, not aerobic, and easily accomplished without any hassle or misery in 25 minutes or less.

So - a diet where you eat more, are never hungry, cheat routinely without limits, and exercise easier for less minutes. Can't possibly work. The purest form of insanity. Stupid, really. Just my sort of thing! I am a big fan of counter-intuitive solutions that work, so I resolved to give it a try. Plan was to implement after my last clear cysto and weekend of celebration thereafter. Goals were set for six months trial: lose 2.5 clothing sizes (to pants waist size 34 inches) and lose 10% bodyfat. Decided to do it right and have bodyfat measured professionally using the Bodpod system. Cost $20 apiece at the local university health sciences center.
I am starting at 32.0% and shooting for 22.0 or less. My wife's numbers and targets are classified and will never be disclosed here. My weight goal? None. Think about it - if you could drop over two clothing sizes and 10% bodyfat, would you care if you gained 50 pounds in the process? My expectation is that I won't gain weight but lose it, but it's pointless if the new weight does not LOOK better as it is distributed around your frame.

Before we get to the punch line, let me tell you about cheat days. At the end of the first week I had an extensive list to execute. Did not accomplish all of it but here's what happened:

Breakfast 1 - normal diet breakfast (same as other days) to set the stage
Breakfast 2 - Six Krispy Kreme donuts (assorted) and a quart of whole milk
Lunch 1 - Chocolate milkshake of the same type I had on the day I was diagnosed (1.75 quarts worth) plus a can of Pringle's Original
Lunch 2 - Half a box of Girl Scout thin mint cookies
Dinner - Veritable feast at Frida Bistro with drinks, wine and dessert

The subsequent cheat days have been along the same lines, substituting things like half a large apple pie and ice cream, pizza, beer, etc. The fact that I have a limited capacity has made me become much more selective in what I choose to eat to cheat.
This week we have moved cheat day to Sunday to accommodate a dinner out with friends. Other than requiring advance planning and procurement (for both days 1-6 and day 7), the diet has been pretty simple to implement and follow strictly. If you get the impression that I am completely guilt free and a bit proud of my larcenous gluttony, you are exactly correct!

By now many have stopped reading, assuming (perhaps correctly) that I am some sort of wacko. And also assuming that such abject foolishness could never possibly work to achieve the desired results. While it's early days yet, we have objectively measured evidence to the contrary (at least on this second point). The tale of the tape and scale:

Weeks completed: 5 (including 5 full days of travel to Florida)
Non-approved cheating: Zero, zip, zilch, nada, none whatsoever
Inches LOST: one half clothing size (38 pants now fit quite neatly, was spilling over before with muffin-top extremis)
Bodyfat: Due to expense, will not re-measure until September
Pounds LOST (because everyone wants to know): 12 (yes TWELVE)

My wife, who is thin to start with, is also pleased with her results to date. Since she bears the brunt of the food preparation hassles, this is a very good thing!

Again, it is MUCH too early to declare success or victory. Stay tuned for future updates!


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!