Christmas Cheer & Reflection - December 27, 2010

Some of you may have noticed the post count has slowed down quite a bit. As I tell family and friends in my "Medical Update" emails - NO NEWS IS GOOD NEWS!! The purpose of this blog is to fill a gap in coverage on bladder cancer. There are dozens of good sites chocked full of dispassionate, clinical information on the types of bladder cancer and the recommended and optional treatments for each. In addition there are a couple of sites with emotional descriptions about bladder cancer's effects on people as well as their families and friends. When I was new to the game, I found both types of sites to be both alarming and disconcerting. I literally could not read much before becoming physically nauseous or faint. What was missing was an objective presentation of what a person will experience during diagnosis and BCG treatments. While my experience will not exactly mirror another's, perhaps my thoroughness will help people get mentally braced for the good and the ugly of what's coming. I think knowing that it is bad, but not too awful, unpleasant but more ridiculous, and most of all it's temporary - these observations will serve to keep your mind from conjuring up doomsday scenarios and allow you to focus on having the right attitude to heal and battle recurrences.

If you have read much at all, the doctors basically say to follow their allopathic regimens up to and including radical cystectomy, and that anything you do extra probably won't help or hurt. Yet many cancer websites for bladder and other cancer forms have a consistent theme - though it is often buried in emotional and/or speculative bullshit. DIET and EXERCISE. Just like the doctors, TV hosts, family, and friends have said all along, diet an exercise are the keys to better health. What they won't say is that better health is the key to controlling cancer - avoiding both occurrence and recurrence. Prior to being diagnosed, I was the poster child standing in opposition to this remedy. Hard to conceive of a worse diet - high in fats and carbs, nothing natural or organic, fruits and vegetables were fine when baked into pies. And for exercise? Fuggedaboudit! I had tried everything and hated it all. As for processed foods? Better living through chemistry for me!

But research has convinced me that, politics aside, there IS something to eating fresh and natural foods, in reversing the traditional American proportions of protein and fruit/veg from 75/25 to 25/75. And avoiding chemicals that are not necessary whenever possible is also prudent, given the absence of knowledge as to just what triggers these cancers. So I have become a believer for health reasons, and I have learned to ignore the politics. In fact, I have been ignoring politics and news of all sorts for two years and find myself living a fuller and happier life - not worrying about things I cannot control.

But not posting today to preach - only to summarize. I was diagnosed on March 31, 2008, with two tumors. Two TURBT procedures later I learned the tumors were T1 Grade 3 and non-invasive by the thinnest of margins. Since then I have undergone six initial BCG treatments and five 3-week maintenance sessions. Add to that multiple scopings and a couple of CT scans. And radical changes in outlook, diet, and exercise (even this very morning). Still battling with excess weight and like many, making a New Year's resolution to do better. All in all I am still alive, kicking, and relatively healthy. Recurrence is still a high probability, and if it comes, I believe it will be minor and easily dealt with. So you CAN live with bladder cancer and not be too inconvenienced.

Another key thing to keep in mind is mental health and outlook. If you think cancer will kill you, then it will. If you think you will defeat it, perhaps you might. Positive outlook seems to trigger the body into using its natural defenses to stave off cancer. And to that end I will share my Christmas Day with you all. My #1 hobby in life is motorcycling. And even though I live in an area famous for winter snow, I manage to get out a bit in the cold. As long as the streets are clean and dry, it can be safe to ride. We had a lot of snow early this year, unusually so, even before Thanksgiving over 2 feet at the house. But it has not been bitterly cold, so the snow melts down a bit before the next storm. Before Christmas we had another couple of feet, followed by temperatures just above freezing. Christmas Day brought cool weather and sunny skies, so I went for a ride. Late afternoon temperatures hovered about 34F (1C) and up in the mountains dipped as low as 16F (-9C). With proper gear I was warm and comfy, listening to Christmas tunes on the satellite radio I as floated through deserted back-country roads. I paused by a lake, not yet frozen (you can see the ice line just to the right of the sign), and went to the end of the road for winter. The flat winter light made the bike look black and ominous - quite the opposite of my mood. So enjoy a few photos (click to enlarge each) and ride along with me on a 100+ horse, open, 2-wheeled sleigh!

A Question About Curcumin (found in curry) - November 18, 2010

I got a question from Mike in South Carolina regarding curcumin consumption: "I have started taking Curcumin 95% total curcuminolds (rhizome-curcuma longa) (18:1) derived from turmeric . I was wondering if you know anything about whether it is beneficial in the fight against bladder cancer?"

Taken from "Foods to Fight Cancer" by Belivau and Gingras, curcumin as consumed in foods with curry (primarily in India) has been postulated (but not proved in peer-reviewed study) to be a factor in the dramatic difference in the rates of many types of cancer between India and North America/Europe. For men the rate of bladder cancer in India is 1/8 the rate in the USA.

The anti-promotional benefits (meaning it does not prevent cancer triggers, but impedes cancer formation) of curcumin are pretty well studied. It has a well demonstrated anti-inflammatory effect, which is vital for those with cancer tendencies. The link between consumption in pill or food has not been studied as well. In the US we are pre-disposed to isolate and deliver in pill form, such as you are taking. In general, it is not certain whether isolating the pure compound (curcumin in your case) is truly beneficial versus consuming it as food along with potentially beneficial corrolary compounds. In fact, as in the case of soy extracts, it may well be too much of a good thing and potentially harmful.

In the case of curcumin, it may not be so much harmful as a waste of time. Pure curcumin is not readily bio-available (your digestive system does not pass it readily into the bloodstream). But curcumin in curry form adds the synergistic compound piperine, which increases curcumin bioavailability by a factor of 10. Piperine is found in most forms of pepper - always an ingredient in curry mixes.

In summary, for bladder cancer: Curcumin good, taken regularly as a food along with piperine (most commonly in curry) very good, taken as an isolated chemical in a pill - not so much, albeit very convenient.

Worldwide Updates - November 12, 2010

It's been a bit over a month since my last post and over six months since I last updated all of you on the progress of our little bladder cancer "fraternity." The news is mostly good. In my case, no activity until March, and then only CT scan and flexible cystoscopy. If all clear, nothing for six more months - meaning NO BCG. That means my news is all good news indeed.

David F. in England is busy starting up a new business, having mostly freed himself from wage slavery in a bureaucratic but well-intentioned charity job. He is having crazy days and dramatic mood swings - both quite normal for a start-up business. Medically speaking, his biggest battle of note was coming to grips with having dental work done (including a root canal), sending us all an important message about not putting such things off. His bladder cancer news is entirely good, as in August he was told that, after four years, dozens of BCGs, and nine surgeries, that he was officially ALL CLEAR and would be going to flexible cystoscopies (and no BCG) annually. Huzzahs all around are in order for David!

HK in Toronto, as some may recall, was having a truly awful time. He had constant pain, well after the timeframe that any of the rest of us had, and particularly bad side effects from BCG - to the point that he could not continue them. Last month he was ALL CLEAR on his flexible cystoscopy, and while his doctors considered doing some BCG, they decided the agony was not justified by the potential benefit. They will wait six months and do another cystoscopy, and they advised him to "take it easy and try not to have stress." Good advice for all of us!

We have a new member, Patrick from SoCal (Southern California), who reports, "I am a 44 year old married African American with 3 beautiful kids and 1 year ago this month I was diagnosed with carcinoma in situ (I never smoked either). I have had the 6 week initial treatment along with 1st 3 week BCG, I am currently going through my 2nd series of 3 week treatments. I have taken the trip to Arizona to see Dr. Lamm and he along with my doctor confirmed I am cancer FREE. I pray and hope the BCG continues to do the job." CIS is nasty business when inside the bladder, but it often responds well to BCG treatments. More on this in Brian's report below.

Brian S. in Atlanta is receiving excellent care with the best tools available. He suggests any in the area should contact him (via this blog) for a referral to his clinic, which he describes in glowing terms: "My clinic has this new scope and it's got an LED light (very bright), a still camera, and of course full motion video. The scope cost $17K! Having the pictures really helps when I go back in a few months later and we ask, "was that there before?" My wife was in the room too and both of us could see inside my bladder as he was doing the procedure. He took pictures of the suspicious area. He even turned the camera back to see it entering my bladder. He described that as, "looking at ourselves". It was surreal, but very cool. This clinic is the best in the area. And to top it off, it's non-profit and backed by the co-founder of Home Depot. Needless to say, they aren't pushing you through to get to the next guy's co-payment!"

Brian's news is not as good as we hoped. His urine cytology came back "suspicious," and the scope revealed what looked to be a white patch of peeling skin. His Emory-trained doctor, who has been in practice for a long time, had never seen anything like it. I suspected it might be CIS (Carcinoma in Situ) that had been damaged (perhaps killed) by BCG. They biopsied him via TUR surgery followed by a mytomycin chemo bake of the bladder. It was the size of a silver dollar, and the biopsy did confirm CIS, which is good news for other cancers and not so much for bladder cancer. CIS is relatively rare, comprising approximately 10% of cases, and is considered to be a superficial tumor (does not penetrate the bladder lining). It is a high-grade and aggressive manifestation of bladder cancer that has highly variable outcomes. David F. above had CIS in addition to other tumors, and clearly he has responded well to BCG. And so Brian will have SIX more BCGs to be followed by scopes.

Roy from Alabama had a minor scare with 2 "spots" detected during the cysto on his very first judgment day, having completed his six initial BCGs. We are all thankful that the biopsies showed them benign.

Mike from South Carolina reports that he had three tumors removed in June and six BCGs. Now he will have flexible cystoscopies every six months for two years. If all goes well, annually thereafter. He is not going to have maintenance BCGs at this time.

Robert S. in New York is now 22 months ALL CLEAR and goes to annual flexible scopings. No BCG maintenance for him either.

I have not heard from Ed B. in Washington, Asya in California, or Jeff in the UK since last April. Let's hope that no news is good news for them all. Perhaps they will give us updates in comments below...

BCG Series 5 - Last of 3 Treatements - October 2, 2010

Good news all around - I did verify with my doctor that the next BCG interval has moved out to ONE YEAR. So we still have a CT scan and cystocopy in March, 2011, but no more BCG until after a second cystoscopy next September. This is wonderful news indeed! And even with my error in judgment on the first treatment of this series, the data for reaction to the BCG this time are well within the family of what could have been expected. My hydration protocol worked like a champ last week, and so was repeated this week. With the increase in reaction (as expected), I made sure to slow but not dramatically drop the hydration intake at the end of the special handling period. As a consequence I was again up during the night to urinate at 11PM, midnight, 2AM, 5AM, 6AM and 7AM, but these had a more "normal" character - no being awakened by pain and then peeing like a racehorse! Really there is no getting around the third series - it is meant to have an effect and it does Hydration regimen this time made the urinary symptoms less than the third treatment of Series 4 (last time). The flu-like symptoms seemed to be slightly less also - and this may be to my decision to stay in bed most of Day 2 (today - Saturday). In the past I had been resuming normal activities as soon as I felt better, and this activity may well have impacted the tiredness I experienced early in the workweek. We shall see, as I expect to take it easy tomorrow as well, before hitting the grind again on Monday.

The extra hydration and extra reaction added up to extra throughput and even more frequent dashes to the toilet. Several times during the afternoon I fell a few minutes short of making the full 20 minute intervals for sterilization! It was good to have my own private express lane here in the house with all the supplies at hand!

I should focus on the non-urinary side effects more, as they are only poorly described in my side effects tables. Starting about 5-6 hours after installation there is usually some cramping in the lower stomach or bladder area, and also around the right kidney in my lower back. Sometimes short in duration and severe, sometimes long in duration and mild, these cramps are always a wild card. Ibuprofen seems to alleviate the inflammation and swelling and dispose of the long duration ones quite well. Additionally there is pain and soreness around the "affected area" and often some generalized body aches and/or a headache. I find that acetaminophen addresses this type of pain more effectively. In the morning I try to gauge which flavor of discomfort is more pronounced, and then treat with the corresponding pills. For the general tiredness, exhaustion, and run-down feeling, all that will help is time and rest. For an introvert such as myself, time alone in a semi-dark room with TV or music to mildly distract me seems to work best. The other lesson learned is to rest, even when feeling dramatically better. This takes some discipline, especially when the weather is near-perfect as it usually is in Utah in September. Another thing I have to watch is my blog writing. My exhaustion and sometimes even "brain fog" renders me incapable of putting coherent thoughts together, and that effect may often be observed in these next-day postings. Fortunately my father reads these blog postings carefully and sends polite emails pointing out such errors, so they get fixed soon after posting!

For those interested in the details, the reaction table is below, about 4.5/10 on the nausea scale.

BCG Series 5 - Second of 3 Treatements - September 25, 2010

While this second treatment was a bit rougher than the second one three months ago, it was over and done faster than last week's. I pursued my own recommended regimen of relaxation, deep breathing, and careful mega-hydration. And I am a bit pleased to report that it worked quite well. Symptoms started earlier and were slightly more severe than last week, which was to be expected. But by 9:30PM I was pretty much fully recovered, and last night I got a decent night's sleep. Next week will be stronger still, but with renewed evidence that my regimen helps, I shall put it behind me quickly!

My Doctor, who normally (and quite unusually) gives the BCG treatments himself, was off houseboating in Lake Powell, resting and relaxing with family and friends. While good for him, it left me with 3 choices - defer the treatment until Monday and interfere with work (not wise in this economy), have the BCG administered by the incompetent nitwit PA Regan (a non-starter), or set aside decorum and discomfort and have PA Liz give the BCG. I went with option number three. Liz had given me a BCG in 2008, again when the doc was vacationing, and it was awkward but acceptable. So I did some extra deep breathing and went forward with my best attitude. After double-checking and then triple-checking the 1/3 dosage with the nursing staff, I assumed a supine position on an exam table. This time we had been shown to yet another new room in the labyrinth, and this one was noisier (from the street traffic), smaller, and a bit creepier than the others - being furnished with a surgical table and a surgical chair rather than the normal exam tables. More deep breaths were in order.

Liz came in with a professional demeanor and warm smile. Two years of extra practice had truly increased her confidence. She was quite careful, deliberate, and a bit slow - but every bit professional. She clearly did not recall having treated me before, and I chose not to remind her. While I missed the speed with which Dr. Hopkins normally works, Liz was an apt substitute. Given my lack of paid leave for illness, it is likely I will have to use her in the future for one out of three treatments, so I guess it's all good, if a bit awkward.

The symptom table shows more urinary drama than six months ago, but less headache, body ache, and duration, so all in all I was pleased with the outcome. And even more pleased to feel fine, if a bit tired, just a day later. Disclaimer, it's about 3.5/10 on the nausea scale if you click to enlarge the table below.

BCG Series 5 - First of 3 Treatements - September 19, 2010

Well if life is a pre-existing condition, then it probably follows logically that foolishness or stupidity is a pre-requisite. As you saw from the last post, Biohazard Man is back. And now belatedly I report on my first BCG treatment of Maintenance Series 5. I have had plenty of experience and over five months off, so I knew exactly what to do and what to expect. Or so one would believe. Unfortunately my data collection and experience increased my level of confidence. I simply knew this one would be easy-peasy, a cakewalk. And so it should have been.

Surely the trip to the doctor's office was normal. Beautiful weather, clear highways, no delays, and we arrived at 9:15 for my 9:30 appointment. We were in and ready to roll by 9:30, and Dr. Hopkins had no other patients to deal with. This was the first time we had done a visit on a Friday, and the place was very quiet. Ten minutes later the doctor came in and did the job. He and I were both a bit surprised that the catheter did not go in easily, and I can chalk that problem up to overconfidence mistake #1. The cystoscopy the week before had gone so well the I blew off the normal deep breathing exercises for the BCG, and it made things a bit more difficult. Not a big deal, but I made a note to add the breathing back in next time.

The BCG was instilled and we were back on the road home by 9:50. I was very thirsty, having forgotten how dehydrated one gets when abstaining from fluids, so I was careful not to hydrate too quickly. That worked OK, but during the second hour I forgot to double my intake as I normally do. This made the first urination much lower in volume than usual, but no discomfort. Even so, I should have taken the hint. I had my normal lunch of soup and toast, and then I sat at my desk and did emails and net surfing, drinking a good amount, but not really putting the effort into hydration. I declined to lie in the bed for this go-around, as the side effects were expected to be negligible. Checking the logs from six months ago, I was pleased to note the symptoms arrive right on schedule - mild as expected. Within 90 minutes they should be gone. So I continued sitting at the desk and sipping my iced tea. The symptoms, instead of clearing, became a bit worse. So I decided to move to the bed and hydrate more. Much to my surprise the symptoms stabilized, but did not decrease FOR 12 HOURS! Since there was no improvement I ramped up hydration in the evening, well after the special handling period.

This was too much and too late as it turns out. I finally went to bed exhausted at 11PM, and I was up every 60-90 minutes all night to pee like the proverbial racehorse. Rest and sleep? Forget about it! By early morning I was zombie-like, dehydrated, and sporting a headache. I spent most of Saturday resting and re-hydrating, all because I was too cocky to follow my own protocol. What was up with that? In a word - STUPIDITY!

The silver lining to this cloud is that the results do support the protocol of rest and super-hydration early in the process. But experimenting on oneself, especially unintentionally, is definitely not recommended.

The tables below show the results. The one on the left shows raw results (for readability), and the one on the right shows the evidence of under-hydration in red and outfall of over-hydration in blue. The side effects were more than the first round last time, and the squeamish may find the details to be about a 3 out of 10 on the gross-out scale, so one must click to enlarge the images below for those details. David F. in England tells me he made some similar errors in judgment during some of his BCG treatments, so I guess overconfidence breeds foolish behavior universally! I think we can all expect Biohazard Man to follow his protocol for the next two in this series...

Biohazard Man Version 2 - September 17, 2010

Biohazard Man is back and he is bigger and better than ever! Check out this new Biohazard Man Version 2 graphic - leaner, more mature, and more graceful by far. This new image is mildly more accurate. There is even a Blackberry in his hand! You can read all about Biohazard Man's superpowers and see the Version 1 graphic in the original Biohazard Man post.

Early on in the scheme of things, after the initial shock of the cancer diagnosis and two TURBT surgeries, the absurdity of the process and the treatments started to appeal to me, and Biohazard Man was born. BCG is toxic, and it contains live, attenuated mycobacteria. Because of the potential risk for transmission, it should be prepared, handled, and disposed of as a biohazard material. And suddenly I have this stuff sloshing around in my bladder making my urine also toxic, requiring six hours of special handling after the initial instillation period. One must admit that nearly all superheroes were spawned from such odd beginnings - bite from a radioactive spider, a special mask, a powerful suit - so a toxic bladder seems right in line.

Let's face it. Here is a life-threatening disease whose treatment is a tube forced up your most private part in front of many witnesses of both genders, after which you are filled with toxic bio-cooties, all of this done on a regular basis, and you are even paying someone to do it to you! If you can't see the absurdity and have some fun with it, you are really missing out. I made up some business cards with the original graphic, my name, and the web page address of this blog on them. By last count I had given out over 100 of them. So now the challenge will be to incorporate the new design. As before, Biohazard Man is faster than a speeding ballet! More powerful than a loco-pollo!! Able to mount tall toilets at a single bound!!! Look in the sky! It's a bird! It's a plane!! It's BIOHAZARD MAN!!!! Beware of my toxic pee!

I have written here on more than one occasion that attitude is the most important thing, and this character is my attempt to spread good humor for all who wrestle with the evil forces of bladder cancer.

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!

Bad News About Agave Nectar, Honey, and other Concentrated Fructose Sweeteners - August 12, 2010

This is all bad news, so I shall keep it short and not sweet at all. I have previously reported that sugar, especially sucrose (table sugar) and glucose (regular corn syrup) should be strictly avoided by cancer warriors. I further suggested that High Fructose Corn Syrup (HFCS) should also be avoided, as it is chemically about the same as table sugar (sucrose is 50/50 glucose and fructose while HFCS ranges from 45/55 to 40/60) while saving your body even the small work of breaking one chemical bond that unites these two simple sugars in sucrose. The reason I gave for this is that intake of these high-glucose sweeteners will spike your blood sugar and super-energize cancer cells by showering them with their favorite food source. Clear, recent, peer-reviewed evidence supports the fact that HFCS is more dangerous than table sugar. Alternatives that I suggested were honey and agave nectar, both forms of fructose (also known as fruit sugar). Some new research from UCLA has indicated that fructose is particularly evil for cancer warriors, even though it does NOT spike blood glucose and is therefore safe for diabetics. The reason is that when the fructose eventually enters a cancer cell, it turns out that the cancer actually PREFERS the fructose for non-oxidative respiration (fermentation), leading to bad side effects like inflammation, uric acid, and healthy/happy cancer cells. While the research article was based only on the particularly nasty pancreatic cancer, it is well known that ALL cancers metabolize sugars in identical fashion.

This is a very unpleasant surprise to those of us who found agave nectar to be a "free pass" to sugar sweetness (and calories) without the risk. So even though Oprah puts agave nectar in her oatmeal (a fact that has driven demand high and promoted widespread availability), cancer is well fed by fructose. My cousin who lives in Mexico, a few miles from the area where most agave nectar is sourced, has also passed on some information that very nasty chemicals are often used in conjunction with making the "nectar," adding to the risk of using it as food. And the amount of fructose naturally occurring in fruit is not large enough to be of concern, but fruit juice (which has the equivalent of way more fruit than you could eat in a sitting) is also a path to high fructose intake. So it looks like Stevia or very limited amounts of organic table sugar, brown sugar, or pure maple syrup are the only alternatives at this point. Honey should be used only in the strictest moderation. Artificial sweeteners? Don't even think about messing with these highly processed chemicals. Safest would be nothing at all.

Please read the comments below this post for some interesting further discussions about fructose and stevia.

Bladder Cancer Awareness Day - July 17, 2010

I apologize first of all for the belated post, having missed July 17 by about 3 weeks, and second of all for stealing most of the content from my fellow-survivor David Ferdinando, who lives near London in the U.K. Even though we are both aware of bladder cancer EVERY day, David is more aware of what is going on in the USA on an advocacy level than I have been. So I will catch up a bit here, and will also refer you to his excellent blog, My Bladder Cancer Journey. David's blog is much more journal-style, almost a stream of consciousness. It gives an outstanding picture of the emotional swings that come with battling cancer. Since mine is much more article based, organized as reflective of my nature, the combination of the two makes for an excellent image of how bladder cancer warriors live. And live we do, and we intend to continue. As I have stated often, attitude is a key element found in survivors of cancer of any type. Feeling depressed about your cancer? Kick yourself in the ass, get angry, whatever it takes to get back on top. If you are fighting cancer mentally every day, the body will respond to make its environment less friendly for the disease.

For those of you who are not aware, Bladder Cancer is the 5th most frequently-occurring cancer in the world. For men it is the 4th most "popular." If that is the case, why have most people never heard of it? Why don't you know more people that have it? In my case I was the first person I knew that ever had it. I think the answer is summarized well by CBS News correspondent Bob Schieffer in the video below. This spot aired at the end of the CBS Evening News with Katie Couric last night (August 5, 2010).



https://youtu.be/Sqdolk6wR0M

For those who don't care to watch the video (very well done, high resolution, and less than 3 minutes long) Bob says, "People don't like to talk about diseases that happen to you below the belt. It's embarrassing to talk about." And that is certainly true. I have also discovered that many cancer survivors prefer to keep their status a secret for personal reasons, and often to prevent limiting their careers. I decided early on that keeping secrets was not consistent with my nature, and that asking around and seeking information required some disclosure anyway. Between my brother's urging and the absence of internet details on what it really feels like to have bladder cancer or undergo BCG treatments, I decided to go even more public with this blog. And after discussing my private parts on an open forum for over two years now, it becomes much easier - perhaps to the embarrassment of my family and friends!

As for information on the internet, there is the well-known problem of both too much and not enough. Too much in general and not enough specifically addressing your question. I have tried to use post labels and key words in post titles to make it easier for search engines to find my posts that address specific issues, and it seems to be working. I see that many have found posts that directly address their search queries using Google, Bing, Yahoo, and other search engines. Most visitors come from the USA, Canada, England, and Australia with a few from New Zealand, Portugal, Israel, and India. For the most part you all find what you are looking for, or at least my opinion about it, and are done after a couple of minutes and a few page views. I rarely get comments or emails, so I presume it must be working. I never get complaints, anyhow. If you do have a complaint, I guarantee to give you your money back, LOL. (Laughing out loud because my advice is free of charge)

As for web resources other than my own, I do have a post on Bladder Cancer Sites and Blogs. One of those, which is also listed in my sidebar to the left, is the Bladder Cancer Advocacy Network. When I originally researched them about 2 years ago, they were focused primarily on raising awareness to get a better shot at government and other funding for research. While it is still their main purpose, they have expanded their reach a bit and have regular newsletters and many helpful links on the latest research, clinical trials, news events, and other social aspects to connect bladder cancer warriors. And this year they sponsored a national Bladder Cancer Awareness Day.

The organization level of the site and the organization have improved dramatically, and I now subscribe to their email updates and newsletters. So perhaps next year I won't miss the formal awareness day. Word is getting out that we do not have to be passive about this disease, and we can do things that may help the medical treatments be more successful in keeping cancer at bay. So happy watching, happy researching, and positive attitudes to you all!

Exercise is a Crock of Poo - July 5, 2010

If you have read anything I have ever written about exercise, you will know that I never present it in a positive light. I am not opposed to DOING something like playing a sport. But just to exercise - on a machine, with weights, bicycle, or running is both physical and mental anguish for me. Furthermore, I never experience any of the purported benefits from this misery and drudgery. Those who feel exhilarated and energized after a fitness regimen - good for you! Feel free to bite me. I am just happy when I don't feel nausea on top of exhaustion. I have tried them all - "Fat burning" cardio, low intensity long duration, interval, and even high intensity interval. Not only do they all suck, but they don't appear to do me any good. Still I shall continue, because if being miserable for half an hour a day helps in any way to defeat cancer, I will do it. But don't be telling me how much better I will feel or how much weight I will lose. There are no data to support these fairy tales.

The latest data set comes from my international friendly competition with David F. in England. He was distressed at recent weight gain. I had never lost the 10 pounds I gained in Mexico, so I proposed a contest. He quickly agreed, and after a week it was off to the races. David's diet of rabbit food and stress (from working a start-up venture) combined with interval training has paid off for him in spades. I maintained my relatively low calorie diet, and added exercise 4-6 days per week. After 4 weeks David is reduced by 8 pounds. I lost zero, one, one, and then gained two - leaving me at net zero. The tale of the scale is illustrated by the graph below:



What can we make of all this? Hopefully nothing. Perhaps my "fat burning furnace" will ultimately kick in, and I can make some sort of showing. I have no idea. My friend Trevor convinced me of the merits of playing squash - the only racquet sport in which the length of volley increases with skill level. He even delivered a few weeks of informal training, and I must say I enjoyed it a lot. It is a game that involves the mind completely, as well as the body. I wore my heart rate monitor and had to ask for several breathers even in our fairly light workout. Experience will teach that not every shot can be won or every ball chased! For more stimulation, a quick internet search reveals this interesting tidbit - for a few brief months in 2001, one British professional squash player single-handedly changed the entire "look" of the game. Check out Vicky Botwright here.

I was nearly ready to take the plunge, and take some formal training in conjunction with a club membership, when a toe injury combined with a back injury to delay that plan for over a year. It may be that it is time to add this sport to the mix soon. I have to take a look at calendar, budgets and so forth. Might make more sense to delay until after the next cystoscopy to ensure everything is still all clear, and get 3 more BCGs done, before making a time and money commitment to squash. I shall have to think about it.

In the meantime one thing remains constant. Exercise SUCKS!

Life and Mental Health - May 30, 2010

If you visit this blog a few times, you can see that the day to day updates appear at the top of the column to the left, while research, medical details, and "deep thoughts" are presented as blog posts. The latter were quite frequent early on when medical interference was also commonplace. Having "graduated" now to the post-two-year cancer free status, my urologist decided to back off a bit. Clear cystoscopy and 3 BCG treatments in March, then no more visits to him until September 9. April-August created a five month window, the longest time I have gone between medical things since all this started over two years ago.

For the past two years solid my primary focus has been doing research, doing medical treatments, changing diet, lifestyle, and supplement regimens, and even some hated exercise. I even devised a logic chart for a multi-modal attack on any type of cancer. Many good things have happened in addition to the cancer-free status - I have lost weight, my complexion has cleared up completely, my hair is growing back (filling in a male pattern bald spot, NOT from having been killed by chemo or radiation), I feel great, and I even look better. My own father did not recognize me when I accosted him in a crowded room a couple of weeks ago. Having five months now free from all this focus is entirely new territory. Now that I feel and look better and have nothing binding me to focus fully on health and medicine, I must admit that I was fully unprepared to deal with it. I suppose an analogy might be to put a lot of effort into climbing a mountain - so much effort and focus that, upon reaching the top, the climber is at a loss for what to do next. Take photos? Jump for joy? Have lunch? Open champagne? And so, nonplussed, our climber just stands there.

And that brings us to today's topic. I had steadfastly refused to plan beyond the next cystoscopy for over one year, and only cautiously planned things a couple of weeks beyond for the past year. Four times we planned big vacations just before the next cystoscopy Judgment Days (two to Mexico and two 10-day motorcycle trips), just to get what might potentially be one last big trip before any bad news. Having "stood motionless on top of the mountain" for nearly a month, it is now time to focus on mental health in addition to physical health. To be sure the two are linked, and I have been maintaining a positive attitude. But this new approach goes beyond - it takes me to a place to begin to visualize NOT dealing with cancer, but to LIVING with cancer. Realizing and internalizing that BLADDER CANCER IS NOT A DEATH SENTENCE. While there is still a high probability of recurrence, I am doing everything I can to battle it, and any recurrence should not be much more than a nuisance.

So what does it mean to begin LIVING again? I decided to start small. At the beginning of May we joined my parents for a few days of rest and recreation in Las Vegas. It is a 6 hour drive from here to there, and we had a great time dining, going to shows, relaxing, and even a modicum of gambling (I was a net winner at that). So what to do next? It had been my habit, pre-bladder-cancer, to take my birthday off work each year and go for a motorcycle trip by myself. This trip refreshed my spirit and made coping with the aging process easier. As an introvert I become energized during times spent totally alone, and motorcycling is a perfect hobby for me. I don't have a Harley, and I don't go to Sturgis or any other pack-mentality type of gathering. Instead I have a Honda ST1300, and I tend to ride alone, or alone with my wife as a passenger, or maybe on occasion with one or two other riders. But the birthday trip is always a solo trip - the first of the season. Over the years it had expanded from one day to a long weekend. And I had skipped 2008 and 2009. And my birthday is in late May, making the ritual bike trip a perfect next step to begin living life again. So four days were set aside with destination to be determined on a daily basis, driven primarily by weather factors. This is difficult to explain to those that don't have the bug. A circle of friends of mine who have the same kind of bike developed a term for a fictitious drug, motorcyclene, which is akin to the endorphin high experienced by athletes. While not physically difficult, motorcycling demands intense mental concentration and tight control of fine motor skills for long periods of time, leaving the rider both exhausted and refreshed. My friend described it like this:

On the open range the road, the landscape, and the machine all provide an experience that is for me soul centering. The rhythm of the ride is at once calming, reassuring. It is rarely achieved until more than a hundred miles have been traveled. This period of lonely introspection and intense observation yields a sense of appreciation and perspective of life that I've never experienced in any other endeavor. It is like meditation, but perhaps a little more like worship. The intensity of concentration required is at once enormous and yet completely liberating*.

And so it went. Four days, 1,800 miles (almost 2900km), 3 nights in hotels, meals ranging from fine dining to a burrito at a roadside picnic table, and weather that was less than cooperative, I have returned - relaxed, refreshed, revitalized, and ready to consider LIVING again. Whatever you do for fun, be assured that the day will come, given hard work on your part along with your doctors, that you can consider living again.

This birthday was #51 for me. I have discovered through a friend that in Brazil the 51st birthday is always called "A good idea!" It seems that the national alcoholic drink, the caipirinha, is made with a distilled spirit similar to rum, called cachaça. While I have not tried either the drink or the ingredient, there is some appeal. As it turns out the most popular brand of cachaça in Brazil is Cachaça 51, and their advertising catch phrase is, "uma boa idéia." This translates to "a good idea." So like Coca-Cola is "the real thing," 51 is "a good idea." So my good idea to celebrate my good idea birthday was to go on a long motorcycle ride. Details with 25+ high definition photos and NO MEDICAL CONTENT whatsoever may be found on a separate page,linked below. Have a virtual slice of my 51st birthday cake and follow along by clicking on the photo or link below...

A Good Idea!

*Warren C. Harhay, June 1, 1999

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.