Exercise - Learning to Hate It Less - February 28, 2009

If you have read any of my stuff, you are well aware that I am on record as an exercise hater. We must acknowledge that it's one of the four foundations for beating cancer, which are:
1) Good attitude and spiritual health
2) Diet that stops supporting cancer growth and starts fighting it actively
3) Conventional and alternative medical care (includes vitamins, supplements, etc.)
4) Regular exercise
The third one is the most familiar. Pretty much everybody does conventional medicine as the doctors advise. Many do alternative things also, such as meditation, vitamins, supplements, ritual washings, healing dance, whatever. If it sounds reasonable to you, if you can afford it, and if you're pretty sure it won't hurt, those are things you should do. What could be the harm? For me the first three items on the were tough enough, and the last one has been a killer. After trying several brands and styles of treadmills, elliptical trainers, stair climbers, upright stationary bikes, spin bikes, and recumbent stationary bikes, I found a machine that I could tolerate. Target heart rate is between 130 and 145 for 15-20 minutes, plus warm up and cool down. Roughly 30-33 minutes on the bike. It's not enjoyable, but I have been able to tolerate it and get it done since the end of last November.

As a condition of my employer's arrangement with the U.S. Air Force (who we support directly), we are permitted to use the base exercise facilities. They are open from 4 AM to 11:30 PM seven days a week, except national holidays, when they close at 5 PM. The facility and equipment are the best that money can buy, impeccably clean and well maintained. Usage peaks early before work, around lunch, and from 3-5 PM as the various shifts complete. It's 5 minutes from work and 15 minutes from home, a half mile detour off the direct route between home and work. And it's free of charge. So what's the problem?

The problem has been my introvert's personality combined with logistics. First, the entire process is very public, including my less than fit condition, huffing, puffing, grunting, and occasional cursing. Second, it takes extra time. Time to negotiate security for that extra half mile. Time to change clothes in the public locker room, time to secure your stuff in a locker. Time to get the tunes hooked up and running in ear buds. Occasionally it takes time for the desired equipment to become available. It also takes time to cool down, change clothes again in the locker room, and exit the base. All of this turns a 30 minute workout into an hour or more. Doing it before work means doing it after breakfast and adding a public shower to the mix. Same with doing it during the day. So the only convenient time to work out has been after a full day's work, which on occasion ranges to 6 or 7 PM. Suffering through exercise when already tired is invigorating for many people, but not for me. I drive home exhausted, collapse into the couch, and can barely eat dinner or make conversation before going to bed. Being the stubborn sort, I do it anyway, because
I'll be damned if cancer is going to beat me just because I am lazy. And despite all the proclamations of the exercise-lovers in the world, I have not come to enjoy it any more - even after three solid months. I have exercised no less than twice per week (during BCG treatments), and have occasionally attained my target of 5 times per week. Most weeks have been four times, or three at worst. The lower frequency has been due to BCG tenderness, and also not being able to go after 5PM on holidays, which are pretty numerous.

Since I received the "all clear" last time I was inspected for cancer, I am resigned to continue. So what can be done to improve the situation? If I could roll out of bed, take my "empty stomach" supplements, grab some tea, and then go exercise first thing in the morning, logistics would be easier and the time greatly reduced. Doing this at the base would mean showering publicly and having breakfast out, or returning home first - a huge time waster.

Last Saturday (after posting to the blog) we purchased a used Life Fitness 95Ri recumbent bike from a very nice lady who had decided she preferred to use an elliptical trainer instead, so she had upgraded and needed to get rid of the bike. After trying both the Life Fitness and the Precor (she had both, which are top-of-the-line, expensive, high-quality brands) I was able to re-affirm that I prefer the ergonomics and arrangements of the Life Fitness brand. For only $525 cash we were able to take it home with us. Moved it inside and set up in the basement right in front of the TV and DVD and VCR and stereo equipment, naturally! An hour or so to clean the dust off and condition the vinyl and plastic - the result looks nearly brand new, as you can see from the photos. Used/refurbished ones on the Internet go for $1400 - $2200 plus shipping, though if you can find one locally, it should be under $900. Such a deal at $525 plus a couple hours driving! No warranty, but this is a sturdy commercial grade of bike and should do well for our purposes here at home.

This week I exercised first thing in the morning, per the pattern described above, on Monday, Wednesday, Thursday, and today. Whilst on the bike, about 8 minutes warm-up, 20 minutes in the target heart range (140 plus/minus 4), and 5 minutes cool down, I am watching a PBS special about the history of baseball, kindly loaned to me by Steve Z. And during the cool-down period (off the bike), I was able to sit quietly and read my Morning Exercises book section for the day. No one to watch me change clothes, hear my grunts and groans, or disturb my quiet reflection and reading. Except for the exercise bit, it was heaven! And the exercise was not as taxing, since my attention was on the TV show except for frequent checks to ensure my heart rate was on target and to note the time elapsed. So while the enjoyability factor has not improved, the tolerability has increased dramatically. And I'm saving about half an hour per day for the entire process. Best of all, the dirty deed is accomplished early, and other than some afternoon tiredness, does not wear on me like the previous schedule. I can now declare the exercise to be a sustainable activity for me.

As for the tiredness that hammered me for two weeks post-BCG, it improves daily. I've started out by being more honest at work. When asked how I'm feeling, I reply,"I'm good. About 80% and faking the other 20%." That comment elicits about 50% cheerful responses and 50% odd looks. Call me hard hearted, but they should not ask if they don't want to know. I was fooling mostly myself by saying, "98% and no issues!" in the past, and it was starting to show in the quality of my output. I feel next week should be a piece of cake, and I will be back above 95% by the end of it. Of course the 5 day vacation next weekend should help - 2 nights in Carmel, California and two nights in San Francisco. Stay tuned for some great restaurant reviews on my other blog in the next couple of weeks!

More Information About BCG Side Effects - February 21, 2009

I try to watch pretty closely what people are searching for when they hit this blog. In the past few weeks the sources have been pretty evenly split between Google, Wellsphere, and BlogCatalog, with a few thrown in from CancerCompass. One thing that most have in common is that you are searching for information on BCG symptoms, side-effects, and dosages. While I am done with BCG until September, I am still experiencing minor side effects from the last series, which "ended" ten days ago. Here is a summary of things that have happened to me:

During treatment: Burning sensation, urgency to urinate, abdominal cramping, backache in the lower right side (below the kidney), soreness and burning in the bladder and urethra, dribbling after urination, and the specific side effects described in my backup page.

1- 2 Weeks after treatment: Mild abdominal cramping, soreness in bladder, burning in urethra, urgency to urinate with VERY little warning plus difficulty starting, minor dribbling after urination.

Up to 6 - 8 weeks after treatment: Soreness in bladder (increased dramatically after exercise or sitting for long periods), discomfort in urethra, physical exhaustion (especially after trying to carry on work and play as if everything is normal), mid-night insomnia, mid-day drowsiness, elevated blood pressure (may be stress related).

I'm forced to admit that the reason I have not mentioned the post-treatment side effects is that each one is relatively minor, all improve day by day, and I have an instinct to "man up" and ignore them or pretend they don't affect me. My symptoms are pretty consistent with the others I have contact with, and according to my doctor, are more severe than average. They are far from the worst that can happen, and for that mercy I am thankful. For those wondering what it feels like, the photo at right demonstrates Mike Tyson delivering a BCG-loaded punch to Irishman Kevin McBride in 2005. I'm pretty sure McBride can handle BCG now!

David F in England had worse immediate side effects summarized here. And this week I was contacted by Ed B in Washington state. His experience has been different from mine, so he agreed to let me post it for the education of all. He also details some minor prostate and other issues. The story is straightforward, but a couple of the items might disturb more sensitive readers (2/10 on the squeamish scale), so you can read about it on Ed's backup page here.

One thing that surprised me a bit was that Ed's urologist was not familiar with the extended BCG schedule or reduced dosage. He approved it after Ed contacted Dr. Lamm and showed him the supporting data. An article describing the efficacy of reduced-dosage BCG is here:
http://www.renalandurologynews.com/One-Third-of-Standard-BCG-Dose-May-Be-Sufficient/article/99092/

In case the link changes in the future, I am reprinting the summary below:

One third of the standard dose of bacillus Calmette-Guérin (BCG) could be recommended as adjuvant treatment for intermediate-risk superficial bladder tumors, Spanish researchers say.

In 430 patients with these tumors, the investigators compared three regimens: a low dose of BCG 27 mg (one third of the standard dose), BCG 13.5 mg, and mitomycin C (MMC) 30 mg. Instillations were repeated once a week for six weeks followed by six instillations once every two weeks over a period of 12 weeks.

Patients in the BCG 27 mg group had a significantly longer disease-free survival interval compared with patients in the MMC group. Compared with the BCG 27 mg group, the MMC and BCG 13.5 mg groups were at 86% and 49% higher risk of death after adjusting for potential confounders.

Disease-free survival was not significantly different between the two BCG groups or between the BCG 13.5 mg and MMC groups. The researchers observed no significant differences among the three groups with respect to time to progression and cancer-specific survival time. Local and systemic toxicities were higher in both BCG groups.

The BCG 27 mg dose seems to be the minimum effective dose as adjuvant treatment for intermediate-risk superficial bladder cancer, the authors concluded. BCG 13.5 mg is similar in efficacy to MMC 30 mg but is more toxic.

From the November 2007 Issue of Renal And Urology News
Also I note that Ed and others have BCG instillations done by any available staff member. Inconsistency in their approaches has greatly increased his discomfort. I am even more grateful that Dr. Hopkins chooses to do instillations himself, which is VERY unusual.


Bladder Cancer Staging and Second TURBT

One thing that Dr. Hopkins and the pathology lab did NOT do was sub-stage my T1 diagnosis as either T1-a or T1-b (b is worse). Robert G from New York (another bladder cancer frat buddy) writes that he is hopeful his T1-a staging is more hopeful for recovery. He provides this article as evidence for doing the substaging: http://www.ncbi.nlm.nih.gov/pubmed/17645415. My take is that such procedures cost more, and all they can do is increase or decrease one's hope factor. Robert G also points out that the Memorial Sloan-Kettering practice is to do a second TURBT to verify staging and grading, which is also expensive and minimally increases risk of ancillary damage. I did have a second TURBT due to perforated bladder, but doing so without such cause is not the norm in the rest of the country. And MS-K will do radical surgery at the slightest provocation, yet another way to guarantee high income for the doctors and hospital. Perhaps I am being needlessly critical, but they seem to me to operate with an ongoing conflict of interest. The only other med center that routinely defaults to surgical approaches for bladder cancer is USC. While it may be true that radical surgery has the highest 10 year survival rates across all patients of all ages and conditions, it's a damn high price to pay, and it may not be necessary. I am banking on faith and education to fight the disease, with radical surgery only as a last resort.

2nd BCG Maintenance Series (3 of 3) - February 12, 2009

The trip to the doctor went smoothly. As has become usual, we saw Dr. Hopkins about 25 minutes after our appointment's scheduled time. Some of this delay is normal - you have to give a urine sample which they quickly test on-site, and my reduced dosage also takes extra time. The procedure to make it has caused some general consternation amongst the staff. All are freaked out by Dr. Lamm's suggestion to mix it dry, so they activate it with water in a sealed container, pull out a partial dose for me, and dump the rest in biohazard disposal. Very odd, since they claim to lose about $15 per dose on what it costs versus what they insurance companies and medicare reimburse. I asked the doctor about follow-up CT scans. He told me that with lower urinary tract (bladder) cancer, there is a small chance of additional growth in the upper tract (ureters and kidneys). The only way to check for that is by CT scan of the upper tract/lower abdomen. He pointed out that the probability was very high to develop lower tract tumors if upper tract was present (logical, as everything flows "downhill"), so I was at least on the better side of the equation. After he was done we discussed schedule. My next scope would be due in late April, only 11 months after my TURBT "all clear." He decided to delay it into May and get a CT scan in advance. This provides him with a lot of data for the 1-year post surgery diagnosis, and he agreed that this is indeed a milestone as far as improving the downside should the tumors recur. He would consider re-setting everything (although BCG would stay in sets of 3) after another TURBT after that point instead of radical surgery, unless the lab indicated that something was worse. So Judgment Day #3 is a biggie, and it will be on May 14 at 1:15PM MDT.


We also reviewed the BCG schedule going forward per Dr. Lamm, the cystoscopy schedule (quarterly for 2 years, semi-annual for 2 years, annual for life) and the CT schedule (every 18 months after the 1 year check for life). I updated my schedule accordingly. It's important to note that the upper time-elapsed count starts from the May, 2008 TURBT when I was initially declared cancer free, while the bottom time-elapsed count (in blue) starts from the Initial 6 BCG treatments, and loses a month or two over time. I also note that I will be 60 years old when I have my last BCG treatment. I should live so long! With this schedule, making short term plans even for this summer is difficult, but an all-clear in May should provide some level of confidence. I have tentative plans for a motorcycle rally right after my August scope, which would delay the BCG into September - no problem according to the doc. Still living life 3 months at a time. To that effect we have a vacation trip upcoming to Carmel and San Francisco in March, and another to Las Vegas in April. Make hay while the sun shines!

As for the BCG round, it was very similar to last week. Not a wonderful experience, yet certainly tolerable. Some interesting things to note as I do more of these. First, it's important (for men) to stand while urinating after the biohazard period. While this probably goes without saying, if you attempt to reduce mess or splashing, or if you're just tired, continuing to sit afterwards will increase cramping and abdominal pain quite a bit. Another important thing is that the next day you feel a lot better, which is not the same as actually feeling good. After every BCG I end up waking up at 4AM and getting out of bed by 5AM or so. Last week I made the error of going in for a 1.5 hour meeting after lunch on Friday, and it lasted 5 hours. Then we had dinner guests. I was a zombie that night and for the next several days. Even if you do feel much better, your body is fighting what it perceives as the flu internally, and pressing on will take its toll. Lastly, while the BCG is active for a couple of days after instillation, the warnings of when you need to go are not very strong, but ignoring/delaying them for very long to finish something out (like typing a blog post) can result in some very sharp pain. Latest misery index chart appears below:



For those interested in details, they are described on the Series 2 Backup Page (7/10 on the "ick" scale, from the first week).

A Legend In My Own Mind - February 9, 2009

While writing this blog has been both cathartic and helpful for me, it's a lot of work. I try to update at least once per week, and I have been doing so for ten months so far. It helps me to organize my thoughts and research, and it gives me a place to vent. Since I am an organization lover, even my rants can be orderly here - after a fashion. I also try to make it helpful for you people. Who are you? Most of you are anonymous, hitting the blog and running. I get a lot of hits from Google, Wellsphere, and BlogCatalog, and an occasional hit from CancerCompass or some other search engine. A few are looking for the pictures to use for their own purposes. No problem - that's how the pictures got here in the first place! Most are searching for specific information about bladder cancer and related treatments. I can usually see the search inquiry, and now that the blog is semi-mature, it looks like most of the info that you are searching for is here somewhere. I rarely know if you find what you are looking for on my blog or not. With the impatience of today's net-surfers, it's probable that many don't. Not much I can do about that.

Even so, I don't require any feedback to keep going, though it's nice from time to time. I have answered to the best of my abilities the only three direct questions that came in via the blog contact form, and several indirect ones deduced from your various search terms. I've also had the pleasure of making the virtual acquaintance of David F and Andy P in England and HK in Canada, which has been a great experience. And I've corresponded with Doug in Michigan, Robyn in Tennessee, and a few others who also have bladder cancer. It seems we are all members of a group that nobody wants to join - the bladder cancer club! Add to that Deb in Arizona, Sue in Canada, Susan from New York, and Crystal from Nebraska who have had husbands and fathers and other close relatives with bladder cancer. As far as I can tell everyone in our little club is following the TURBT and BCG protocols and having reasonable success and variable levels of discomfort.

In a post last month I made this statement,
"I can't claim that my insights here represent any level of brilliance. If they can alleviate some stress and concern for anybody, I will be pleased."
There is evidence that some of you have been aided by my sharing, so I am pleased. You have put comments on the blog and/or sent encouraging emails via the "Contact Me" photo link near the bottom of the column to the left. And in my last post I updated you on David, Andy, and HK. Here's some of the other feedback...


Last weekend I got this very gratifying anonymous comment:
"I'm 4 days away from my first TURBT procedure. I know exactly what you're talking about. I've been putting on a brave face for my family, especially my wife. But I'm pretty freaked out inside. Thanks for writing about your experiences. It is really helping me prepare." Have not heard how the TURBT went, but we all hope it's OK. He should be pretty much back on his feet this weekend.

Deb in Arizona provided this comment:
"Hi Steve, sounds like you are doing A-OK. My husband is NOT a computer user but your descriptions of your TURBTs is pretty much what he went through - twice coming home WITH a catheter and twice without (yes - 4 TURBTs so far). ...Anyway - just wanted you to know we are always interested in your updates and appreciate you continuing to do this. It's very helpful and makes, at least my husband anyway, feel not quite so alone... keep up the good work - and keep exercising - even if it does suck! Deb"

Crystal from Nebraska is battling cancer on several fronts. She provided this comment:
"Interesting read! My dad has been diagnosed with bladder cancer so was researching and reading which brought me to your blog. Currently I am fighting skin cancer...for 10 years, using different protocols and praying vehemently for a natural, non-invasive way to put my body in position to heal itself. No permanent damage....but with the research of bladder cancer I came across the Johanna Budwig protocol for cancer. I started this last Thursday and have noticed amazing results in the facial spots disappearing! Thought you would be interested researching this because the cost and regime is simple! and feels 'right'." The Budwig protocol that Crystal references is based on balancing certain types of lipids (fats) in your diet, and boils down to eating cottage cheese with ground flax seed mixed in daily. I think it's consistent with the other cancer-fighting regimen in the cancer-fighting diet described in my diet post, and it's worth a look. What probably won't work is continuing to eat fried food, chemical laden food, and sugar whilst hoping the Budwig protocol can fight back the cancer by itself! You can check it out for yourself here: Budwig Protocol

Crystal also adds this very good point,
"John 10:10 says that Satan comes to kill, steal (thief), and destroy. So does radiation, chemotherapy and body part removals via surgery."

And my virtual beer buddy, Doug in Michigan, Googled about TURBT and beer, prompting several posts that have now been found by other anonymous searchers. I now have some new hope - check out this BioBeer link and be inspired by American ingenuity! Doug will appreciate the shout-out here and will now know he's not unique. The graphic at right is for him and all those who wonder about alcohol and bladder cancer! Doug said in his last update:
"Have not visited your site for a while. Glad to hear you are doing well (and still mentioning me regularly-Ha!). You should know that it appears you are doing very well with diet and exercise. I am doing OK but still not strict enough with diet and regular enough with exercise. Keep up the good work!"

Another comment came in from Ron last week:
"I was diagnosed with bladder cancer in October 2008, had a TUR on 11-11. Have finished 3 BCGs with little after effects (some blood on day one and two; urgency for a couple of days.) I am planning on a Dr. Lamm-type vitamin regimen soon. I will continue to follow the blog -it has a lot of good, sound information. Thanks for starting it." So thanks for the encouraging words, and keep in mind that Dr. Lamm himself told me that the diet change would be more effective than any vitamin regimen, including his own!

From an anonymous reader in Michigan:
"I pray for a good result for you. I had my own cysto on Friday and am now heading for my second Turb and the mitomycin-c instillation I didn't get the first time. The doc saw a spot and since I had a huge (racquetball size) tumor and my bladder was perforated when the took it out, I wasn't able to get the Mi-C. It's been six months since my first Turb and I was beginning to feel like I might get out of this real good, but now its back to the grind....Probably some BCG in my future too." Hang in there, I believe strongly based on my experience and others that the chemo post-TURBT makes a huge difference!

One person I have not heard from in a while is Robyn from Tennessee. Her last contact was in August:
"Hi Steve, This is a great blog. You are a talented writer. I too have bladder cancer. I have had 2 surgeries and six BCG treatments. The cancer has come back and I am scheduled for surgery again 8/19 and then 6 more treatments. It's been a rough road but if you can deal with it with humor and love, it always makes it better. We ride motorcycles a lot also. It's wonderful, isn't it? Have a wonderful day and keep up the wonderful work!!! It is a blessing. I will be praying for you."

And I got a very happy note from Andy from somewhere in the USA: "Hi Steve, I'm glad to read that you are making good progress. I have been following your events since the discovery of me having bladder cancer in October of 2008. I received the last of my BCG treatments on 12/22/2008. Thanks for your advice. My experiences with BCG treatments and that darn blasted catheter were about the same as yours. I finally received the results of my last biopsy taken on 2/02/2009. I'm very happy and thankful to announce that I'm presently CANCER FREE! Thanks to you, my family and friends I never accepted the thought that my treatments would fail. If it were not for my observant family doctor I would still have cancer lurking around my bladder. Every time I visit his office I have a huge urge to thank him again and again. GOOD LUCK STEVE. I will continue to follow your blog page and pray for everyone's success."

So thanks for the feedback from those who are brave enough to comment or contact, and those that are "hit and run" are welcome also. All can keep in mind that we are not alone in the battle, and that proper medical care, prayer, diet, exercise, and attitude can indeed work wonders.

2nd BCG Maintenance Series (2 of 3) - February 5, 2009

After having a pretty easy time three months ago with a 1/3 dose of BCG, I was expecting to have the same last week. While it wasn't awful, it was not as easy as hoped. This week I expected it to be a little bit worse, and I'm pleased to say I was wrong again. It was much easier to handle and I got through it all without incident. Travel to/from the urology clinic and instillation were routine. Symptoms started 3.5 hours after instillation and peaked quickly at hour 4. Low grade side-effects lasted well into the evening, but were easily dealt with. All in all a decent round this time. I did show Dr. Hopkins my Misery Index chart, and he liked it a lot. He was pleased to see the big difference between the 1/3 dose BCG and higher ones, and he was not at all concerned about the variation between the last two. Check out the updated chart for yourself:


For those interested in the gory details, they are described on the Series 2 Backup Page (7/10 on the "ick" scale, from last week).

I also revisited the BCG schedule that Dr. Lamm recommended, and scheduled out my best case scenario to complete the BCG regimen. It was a bit of an eye-opener to see that my BCG treatments will complete in the last half of the year 2020! Guess I need to start thinking out beyond April...


Other bladder cancer news:

David F. in England is slowly recovering. He was hammered with a nasty cold/flu after his last cystoscopy and biopsy (in hospital with general anesthesia), and that nastiness progressed into a wicked ear infection. David had good news/bad news from his scoping - no cancer or pre-cancerous cells, but atypical cells were observed. So David, who thought he was "all done," now has some more BCG and scopings to come. Schedule and duration still TBD, but not likely to go through 2020!

HK from Canada reports all clear from his cystoscopy and starts another three doses of BCG maintenance next Tuesday, February 10. HK had a rough time tolerating the BCG before, so I hope he can convince his faceless, socialized system to drop his dosage. I sent him the "misery graph" above to use as ammunition.

Andy P. (also in England) has had a bonus diagnosis of hypertension (high blood pressure), which is a new experience for him as well. This is on top of an upcoming in-hospital cystoscopy on Monday, February 23. That UK procedure is brutal. Overnight hospitalization, catheter, saline wash, etc. And they remove tissue from six areas to be thorough. I'm man enough to admit I appreciate the gentler (albeit more frequent) flexible scope approach used in the USA.

Wish us all the best, and keep us in your prayers. It's clear they are having positive effects!

Is the Diet Working? - Tale of the Scale - February 4, 2009

Many of you have left comments or sent private emails regarding the diet that we have undertaken. I have provided very few details in response. The main reason is that I wanted to gather some evidence of its effect before making any declarations about its efficacy. Which is a mouthful of words to say, "Why recommend or describe something, when I don't know if it's doing any good?" So here's the BIG QUESTION:

Does the diet work?

For those eager to get to the bottom line, the answer will be disappointing:

I don't know.

The question is more complex than it might seem. How shall we define "working?" I'd have to assert that the number one effect we are seeking is that it slows or stops cancer progression, and delays or prevents cancer recurrence. (The two terms are described by Dr. X in this post.)

Now let's look at my personal timeline:
Symptom (tiny drop of blood in urine) February 10, 2008
Diagnosis (bladder cancer) March 31, 2008
Staging (TURBT #1 - T1 non-invasive, Grade 3) April 9, 2008
Cancer Free (verified microscopically) May 21, 2008
Started Diet August 1, 2008
Started Exercise November 24, 2008
TODAY - 8 months cancer free, 6 months on diet, 2 months on exercise (and still despising every minute)

In addition to surgery, diet, and exercise, I have engaged in a heavy program of prayer (don't discount it so easily), BCG treatments, vitamins (Dr. Lamm says not needed), and "magic powder" from the internet (PectaSol-C MCP). So what that means is IF the cancer does not come back (still unlikely, sad to say), or IF a recurrent cancer does not progress, it will not be possible to assign the cause. In other words, if something in the above list works, we won't know which one (or set of several, or even all of the above) is doing the trick! And don't forget we can't rule out divine intervention, either. The long and short of it is that I will never know if the diet works, or if it works alone or in combination with something else. If it does work, it could even be as simple as only one food added or avoided as a subset of the diet. There's just no way to know for sure.

What I do know is this - Changing your diet is affordable and easy to do, and therefore it's worth doing, because it COULD contribute to fighting your cancer battle. And if you don't have cancer, it COULD prevent you from getting it. So let's spend some time discussing how diet changes theoretically could make a difference. Some of this is logical conjecture, some supported by peer-reviewed and published science, and some supported anecdotally (which does not and should not count for scientific or medical opinion). This is why your doctors are forced to be non-committal about the possible benefits of diet changes regarding cancer. If they say anything at all about diet (unlikely) they will work along the lines of tried and true weight loss, heart disease, and blood pressure benefits.

Now that I am six months into diet and two months into exercise, and even though I can't demonstrate that it has been a factor in keeping the cancer at bay so far, still there are measurable results. For the past several years I have been wearing pants with waist size of 40 inches. Until a couple of years ago they fit OK. But since then I have been spilling over the top of them - the term for this, apparently, is Muffin Top, and for me it would be super-sized Muffin Top. I finally went out and bought a size 42 belt, and found even that was too small! Depressing. But in the last six months my pants have started to fit again. I pulled the unused belt out of the closet, and found that I could now use it, albeit on the very widest notch. Then a few months ago I had to tighten it a notch, and then another, and still another. Now my pants are a little bit too loose, and I have only 1 belt notch left before it becomes too big! So there we have some measurable data to support that the diet is doing something good.

In addition to the saga of the belt we have the tale of the scale. I have been taking weekly readings of weight, blood pressure, and heart rate for several years. The weight scale over the past year has shown some dramatic changes. The results are graphed below, and the numbers speak for themselves...


So what exactly is this diet, and where did it come from? We started our research with a recommendation from Crystal, my nurse advisor. She mentioned a book by Jordan Rubin. Some research on Amazon revealed several things. Mr. Rubin has written over a dozen books, and the Amazon reviews by purchasers are not flattering. Apparently he repackages the same material or subsets of it and markets the result as new and different. The consensus Amazon reviews were to stick with one book The Maker's Diet and one supplemental booklet The Maker's Diet Shopper's Guide. What Mr. Rubin does have going for him is that his radical dietary change reversed his near-terminal case of Crohn's disease, a wasting condition whereby foods are not absorbed from the intestines. His miraculous recovery is testimony that something worked. The problem is that what research he conducted was all retroactive by necessity (he was about to die, after all!) But this approach becomes scientifically inappropriate when you are looking for evidence to support the conclusion rather than developing a conclusion based on the evidence. Since I could not resist temptation and marketing, I ordered a third book of his. And therefore I am able to affirm the Amazon audience is correct. I furthermore suggest (with some evidence to my credit) that his newer publications not only repackage the original data, they are poorly organized, internally inconsistent (e.g. don't eat X while X appears in a subsequent recipe), and sparsely populated with additional data, most of which is based on conjecture rather than science. So while you can call Rubin's books the foundation of my personal diet, the best way to categorize my review of it would be "mixed." It may be worth reading, but not worth following to the letter. Unless you are into ritual washings and healing dance. (Just kidding on the dance)

So I looked for additional diet information. My friend Kathie suggested a book by Dr. David Servan-Schreiber
called Anti-Cancer - A New Way of Life. This book mixes some fascinating science regarding diet and cancer with a shockingly depressing world view. I felt like taking a shower after finishing it. Perhaps we can call this one a mixed review as well. On the upside, it led me to a third book by Beliveau and Gingras called Foods to Fight Cancer. This last book, beautifully illustrated, contained more hard science mixed in with a typical, modern, pro-evolution world view. At least it was not depressing. My diet is comprised from all three sources (and others cited therein), and it mixes them with common sense, affordability, ease of implementation, and some measure of my personal bias (despite my best efforts to be objective).
Here is the scientific/engineering approach to my diet:

1) Stop eating things that MIGHT trigger cancer, and
2) Convert your body from a friendly host to an unfriendly environment for cancer, and you accomplish this when you stop eating things that DO feed existing cancer, and start eating lots of things that cancer dislikes.
Rationale and actions for #1

Nobody knows what triggers cancer specifically. Smoking is a big problem for lung and bladder cancer, though it wasn't for me. Industrial chemicals (like clothing and hair dye) are another. Nobody knows exactly how. Other cancers are pretty much unknown causes. But one third of the population in Western countries will develop some form of cancer. Countries with primitive diets (less meat, more vegetables, no chemicals or hormones used in farming) have a much lower rate of cancer. Other nasty diseases are higher, due mainly to poor sanitation. So the key is to be sanitary while avoiding any added chemicals like fertilizers, insecticides, hormones, preservatives, colors, flavorings, etc. All should be avoided. The list includes processed foods like Cheez Whiz, most prepackaged food, sausage, etc. All are chock full of chemicals - not just preservatives, but also colorings, emulsifiers, clarifiers, stabilizers, flavor enhancers, and whatnot. Meat should be all natural, hormone free, and "vegetarian." Until mad cow disease devastated the Western beef supply, nobody realized that producers regularly fed cow parts to cattle and chicken parts to poultry, etc. Many people still don't know it. After mad cow, what's the fix? Feed the dead carcasses (after processing) to poultry! Don't believe it? Check out Mike Rowe's Dirty Jobs Animal Rendering episode. In order to save you money and keep the planet "more green" by recycling, dead animals have been added to the animal food supply for years. I had no idea. To avoid other chemicals your vegetables should be organic, whenever possible. And chemical preservatives of all kinds should be avoided. Artificial sweeteners (nutra-sweet, saccharine, whatever that yellow packet stuff is, sorbitol, xylitol, etc.) are no longer an option. Animals that eat other animals (or meat by-products) or their waste should be avoided. Pigs and shellfish are at the bottom of the food chain - they eat dead animal (for pork) and fish (for shellfish) carcasses, and they do at times eat poop - sometimes even their own! Bottom feeders like catfish should also be avoided. Fish to eat should have fins and scales. (One exception would be tilapia, which are used to eat the poop of other farmed fish). Because they are bottom feeders, pigs and shellfish have a higher input of residual industrial and farming chemicals, which are stored in the organs of cattle and poultry and fish, which are in turn fed to the bottom feeders. So pork and shellfish (both of which I love) have a higher probability of trace amounts of chemical content. And just to ruin your day, deep fat frying food creates some odd chemicals in the edges/crusts of things (the brown tasty bits), so fried foods should also be avoided.

Rationale and actions for #2

First, stop feeding the cancer! Sugar (glucose) is cancer's favorite food. Anything you eat that increases or spikes blood glucose is feeding cancer its vital nutrient. So more things on the avoid list are table sugar (sucrose), high fructose corn syrup (HFCS), bleached enriched wheat flour (which is in everything), corn starch, or any finely milled flour (even organic whole grain), high starch vegetables (potatoes, corn, yams). Processed foods also tend to spike glucose because they are composed of hyper-fine particles easily absorbed by our bacteria-free digestive tracts. The worst offender is HFCS which is also in everything. HFCS is to table sugar as opium is to poppies - as far as your blood glucose is concerned. That delicious donut, cake, or ice cream? Imagine it showering the cancer in a warm bath of nutrients to make it happy and encourage it to grow. Not so appetizing now, is it?

How to sweeten anything? Honey (in limited amount - no more than 2 tbsp per day), stevia (a leaf extract), and agave nectar do not tend to spike blood glucose. But agave nectar has some real problems for cancer. I no longer use it. And a bonus - butter is in (organic, of course) while margarine is out. Yay!

Also we need to eat things that attack the cancer on two fronts - direct assault (less acidic blood chemistry) and cutting the supply lines. Cancer cells send chemical signals to nearby food supply lines (capillaries) to divert them to its own evil uses. Some foods block or reduce the effectiveness of these chemical signals. So things we want to eat more of are from the several classes of foods that seem to correlate well to reduced cancer incidence. Rule to live by - raw is best, or only lightly cooked. Juicing is a poor option (more on this below). Citrus fruit, cabbage, broccoli, cauliflower, brussels sprouts, kale, garlic, onions, leeks, shallots, chives, turmeric (a prime spice in curry), red grapes, blueberries, blackberries, raspberries, strawberries, green tea, soy (tofu, miso, tempeh, or edamame), tomatoes, wild fish (not farmed - smaller fish are better), chocolate (in moderation = 1.25 oz per day, 70% cocoa mass or higher), red wine (in moderation = one 6 oz glass per day), and sweet potatoes (which are yellow and not yams which are orange). You may be eating a lot of these already, but they are probably drenched in sugar and/or cooked into mush. So they do no good.

And here also is where the chlorinated water comes in. It kills the natural flora (bacteria, etc.) in your intestines, preventing the full digestion of these foods and limiting the good that they can do in your system. We did two weeks of extremely limited dieting, avoiding vinegars and eating probiotic foods (natural ones, not the yogurt sugar stuff in the grocery). One can even take probiotic supplements to kick start your digestive system. This part is a bit gassy and uncomfortable until your system adjusts. Taking any of the good foods listed above as dietary supplements (pills or capsules, e.g. garlic, soy isoflavones, green tea extract, etc.) is tempting and it's the American way. Sadly these often end up being too much of a good thing, and at best supplements provide only one or two of the thousands of organic compounds found in the whole foods. So it's often the case that such supplements can do more harm than good.

That said, we take a few supplements, in small amounts, for things that are hard to get from our improved diet. One supplement we take regularly is Omega 3 fish oil, because good fish is hard to get here in Utah. I don't like the idea of juicing either (though I love juice), because one tends to consume way more juice (which is rich in natural fruit sugar) than one could reasonably eat of the raw fruit. A large glass of OJ, fresh squeezed, might be 5 or 6 oranges - way more than you would ever eat in a sitting. And you get all the sugar, little of the fiber, and none of the other good stuff. Also avoid even all-natural and organic processed juice drinks, jams, jellies, and frozen desserts. Even those with "no added sugar" are nearly always loaded with white grape juice to amp the "natural" sugar even more. You might as well be drinking Kool Aid.

All of this is a big change for most folks reading here, and it seems hard to do, but what's left is pretty good stuff. Our meals typically consist of one quarter protein (meat, fish, or eggs) and three quarters fruits and/or vegetables - organic. A standard American plate is at least half protein, one quarter or more starch (potato, which may as well be sugar), and an afterthought of vegetables (frequently overcooked), plus a sugary dessert, all accompanied by sugary (or chemically sweetened) coffee or tea, etc.

For me it was an enormous and unthinkable shift. I used to eat several sugary snacks daily, and salty snacks high in starch (more sugar equivalent), all loaded with preservatives, tons of bread (even whole wheat is made mostly with white flour), and gallons of diet sodas. Pork and shellfish? My favorites! Bacon at every meal! I often explained to my wife, "Fruit sucks. I will eat all the fruit you care to bake into a pie. With ice cream!" After I studied it, I discovered that my diet since infancy had created an ideal environment for cancer to take root, grow strong, and spread out. And I had no will power at all. Donuts at work? I'd take three instead of one. But now that I view sugar as a deadly poison, will power is no longer a problem. I can walk by donuts, or have an orange while others eat muffins without the slightest regret. And I only started the diet last August. Less than a year ago I would have flatly stated that such behavior was simply not possible.

And the jury is still out whether or not all of this diet change is too little too late. I figure avoiding the chemicals and eating the items in #2 above will help keep the cancer from coming back. If it does come back, avoiding the things that cancer loves and eating things that cancer dislikes will "make the cancer miserable," so it won't grow and thrive. Then the docs have a chance to get it before it gets me. That's the theory. There is some science behind most of it, but there's not a lot of money to be made in this approach from new drugs, etc. So you can see why much of it is not fully studied, peer reviewed, and published in accepted scientific journals.

Even though this is the info you've been asking for, it may well not be the stuff you really wanted or hoped to read. All of us want to believe we can continue our current habits/vices and the surgery and BCG will take care of everything. I'd suggest that's probably the primary reason why the 5 year recurrence of high grade bladder cancer is over 80%. I don't like those odds, and I am willing to do radical changes to improve them.

I challenge you to consider doing the same.