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

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

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

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

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

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

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

David F. in England has nearly forgotten about having cancer, keeping himself busy with starting a new business. But the deaths of many friends and acquaintances from other forms of cancer serve as a near-constant reminder. David and I agree, if one has to have cancer, bladder cancer is a pretty good option. Still David notes the effect his cancer experience has had on his day to day life and modus operandi. Some good and some bad, and all difficult to grasp or explain.
HK in Toronto has had several months off after a miserable reaction to BCG. He has a cysto coming up next week on Tuesday, April 12, and he would appreciate all your prayers and positive support.
The real warriors are Joe and Heidi in Washington state. He has bladder cancer and she has breast cancer, and they are dealing with both constantly. Joe also reports burning and urgency as much as 2 weeks after his final BCG, which is a bit rare and unfortunate, but not "out of family" as symptoms go. He also has a cysto next Tuesday, April 12.

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

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

So how does one survive during the week of six days? Day 1 is easy, having indulged nearly every food fantasy the day before you feel a bit "hung over" and don't want anything bad. The first week I did not eat at all until after noon. Day 2 - 6 you will have various desires and cravings that can easily be fought off because of two simple factors:

1) You eat quite a bit of the allowed foods - four meals per day, and you are never really hungry
2) Anything you crave you CAN HAVE within a few short days
I make a list of things I want during the week to eat on Saturday, my Day 7. I quickly found that what you WANT to eat on Day 7 is quite a bit more than my capacity to stuff it in - a shock to anybody who has seen me pile in the food.

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

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

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

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

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

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

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

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

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


Randi said...

Always great to read a new blog entry Steve. Your new "diet" sounds interesting. We passed our first "Judgment Day" with great news from first cysto after initial 6 BCG treatments. NO CANCER!! Now two thirds through the second BCG series and my hubby is doing great. We love Dr. Lamm!!

Ken Hummel said...


Thanks for the update which gives me & I'm sure all the rest of us a lot of hope for staying cancer free long term. I did want to share with you my problems with being overweight and the solution I have found to date. My top weight was 243 pounds and I have been a lifelong binger and unable to ever diet successfully for very long periods of time. I joined an organization called Overeaters Anonymous (OA) way back in 1974 and for 29 of the past 37 years I have maintained a weight loss of 55-65 pounds & now weigh about 178 lbs. at 5' 11" and 61 years old. I did have a very rough 8 year relapse between 1988-1996 when I basically left OA and despite numerous attempts at Weight Watchers, et all, I was not able to control my eating or weight. Since rejoining OA in earnest in 1996, I have maintained a relatively stable weight while averting any serious overeating. The OA premise much like AA is predicated on the idea that we are addicts and as such a successful solution for many is a three fold approach on a physical, emotional, & spiritual basis. It is a strong support system that works for many but not for anyone. I'm only sharing this with you as a possible option you may want to consider at some point. I work with a nutritionist and eat 3 primary meals a day along with 3 snacks which lessens hunger cravings between "feedings". Many areas have in person meetings to attend and there are also many telephone & internet chat meetings as well. Like so many of us with BC, I radically changed my eating habits very much along the lines you have-i.e. no sugar, white starches, red meat, preservatives, artificial sweeteners, etc. in an effort to optimally fight the cancer. If you are at all interested in hearing more let me know and I can go into more detail. One more question for you-I still haven't tried the Flax seed and cottage cheese regimen-are you still including that in your diet & is it tasty? Thanks and congratulations on your 33 months of no bc-I'm sure it feels wonderful and you have worked very hard to help yourself which apparently has paid off. Hope all is otherwise well with you and yours.


Joe Hendricks said...

Wonderful update!
My csyto Thurdsay is giving me nightmares.
I plan to consult with a world famous bladder cancer Onocologist at Seattle Cancer Alliance if this Thursday's cysto shows the slighest5 regrowth. I will do EVERYTHING to avoid losing my baldder or anyother organ!

Thanks, Steve!!

Barbara said...

Thanks so much Steve for all your well researched data and optimism. I am newly diagnosed and just had my TURBT last week. I have learned so much from you and feel more informed now that my initial panic has passed. Please keep posting and spreading your good wishes.

Barbara, NY

Carol Young said...

Thanks for this great post, Steve! My husband's father was recently diagnosed with bladder cancer, and we're all having a difficult time getting used to the diagnosis. It's hard to know what to say to him, even though we love him so much. Actually, we've been reading some of the advice for families with a member who has cancer at, and the advice there has been helping. I'll be coming to your blog more often too now!

Brian from Scotland said...

Thanks Steve for this blog which has been very informative and taken away a lot of the ??? scary side of bladder cancer ....I am going in for my first session of BCG tomorrow and am now a lot more positive thanks to this blog.Good luck to all who read this very informative blog as you are probably all in a similar situation, or have been.