A Legendary Day - May 25, 2009

The day referred to in the title is yesterday rather than today. Yesterday was my birthday, the big Five-Oh. ---> 50 years. Half a century! Hard to believe - to believe that's it's happened, and to believe that I enjoyed it. It's been a weird year plus a few months to say the least, and a big attitude change for me. In my mind I am still 25, ready to adventure, and spoiling for a fight. Now actually double that, reality is not at all how I envisioned it. Instead it is much better!

I guess I always wanted to be twenty-something forever. When I turned 30, I grew a ponytail. I had plenty of hair, thin and straight and some grey, but lots of it. Apparently this thing was ugliest thing ever. Since I could not see it, I asked everyone how it looked. They all said, "It looks great!" When I finally cut it off the very same people all said, "Thank goodness you got rid of that stupid pony tail - it looked really bad." If they had been honest, it would have been gone much sooner. But I suppose they thought they were being polite or something. So when I turned 40, I decided to just disappear. Got on the bike and headed for the mountains for 5 days. Rode until my brain was numb. In retrospect, probably not the best use of a good ride. Then Y2K came and went without much fanfare, or blood in the streets as some had predicted. But 9/11 came and there was blood and ash in the streets. Then Afghanistan and Desert Storm. Like most Americans, I became jaded about it all. Work, go home, eat, drink, play, church once a week, and repeat. Then March of 2008, and the "Big C" gave the biggest shock of all to the system. What I said a couple of months after that is so true, and even more so today. CANCER WILL CHANGE YOUR LIFE. It's up to you and God whether it will be for the better.

I am thankful today that my life has changed for the better in every way. Despite the crushing economy, scariness of the medical situation, frustration and uncertainty in the employment arena, etc. I am doing just fine, thanks! Since my last birthday I have lost 35 pounds (wasn't a goal, but a welcome byproduct), changed my diet and exercise habits radically, and improved my general health in every way. In fact, I believe I am a year younger today than I was at my last birthday! Truly amazing stuff. And rather than moping about a birthday or trying to cling to lost youth, I have embarked on a program of health that has been anti-aging as well as anti-cancer. I never would have believed it possible, and flatly would have declared such changes inconceivable for me. I also am attempting to take up squash, a much more difficult game than the racquetball or handball it resembles. Thanks to my friend Trevor for suggesting it and helping me learn.

Due to the American Memorial Day holiday today, we made no plans to travel, but chose to stay home. Most of the neighbors did the same, probably due to school being in session still. I know several who plan to hit the vacation highway next weekend. I may do a recreational motorcycle ride sometime in June as well. We have a dinner out next weekend, a play and tailgate to attend in June, and a wedding in Texas. There are a lot of things to celebrate and enjoy in the upcoming weeks, and we decided to stay at home this holiday weekend.

So this milestone birthday was anticipated and celebrated with relish. My wife worked for days preparing healthy meats, salads, snacks, and even desserts, and we had several people over for an afternoon and evening of great food, great beer, great wine, and even greater company. I am greeting 50+ with a smile rather than a snarl, and it's a whole new ball game and attitude for me.

Several folks gave generous donations to our church's building fund for my birthday, which was a wonderful gift. And my parents and my friend TK decided to celebrate the moment with coins. On the right we have a pic (click to enlarge) of a handmade plaque from TK, with 51 pennies, one from each year in order from 1959 through 2009. What a thoughtful and creative gift. And my parents, with justifiable concern about the state of the global economy and potential for currency collapse, decided to give me the gift of hard-money. Ten silver "rounds" with one troy ounce each of .999 pure silver good for (and backed by) BEER! Each good for "one or more beers anywhere in the world," and worth about 14-15 beers today. Very cool indeed, pictured below, click to enlarge. The day and evening passed quickly with great conversation and fellowship. I thank all who stopped by, and those out of town who emailed, called, and otherwise toasted my longevity. I can only hope your day was as joyful as mine. Now I can see that birthdays are a gift to be cherished rather than events to be dreaded and ignored. I look forward to another 50 years full of happiness (and perhaps even more blogging). Life is an adventure, now more than ever!

Wishing all you readers the best in health and in life.

SK

Judgment Day #3 - ALL CLEAR - May 14, 2009

Hello and thanks to one and all for reading along, caring, and praying or sending alternative forms of positive energy. Mixed with my complementary therapies, we have a resounding success in the form of an ALL CLEAR today. Only thing to wait for is the lab result from the urine cytology and FISH tests. So today we have the CT scan results showing nothing of concern, a urine exam for bacteria, blood, and/or tissue all clear, and a visual inspection via cystoscope also all clear. With the lab results next week we should be able to declare me cancer free for a year minus a few days, but close enough! The doc confirmed that he will go to every six months on the BCG, so no treatments this time, and then another scope to be followed (if all goes well) by 3 BCG treatments in September. Until then, I am free from medical obligations.

So let the celebration begin! We got some fresh fish at the market for dinner tonight, and some very expensive cheeses to use as appetizers. This was truly an awesome birthday present.

We left about noon for our 1:15PM appointment. We had to pick through two construction areas on different freeways to get to the doc's office, so we left earlier than usual. Arrived at about 1:05 and was into the exam room by 1:15. Urine provided and checked, I hopped on the table to await the doc. He came in and told me the X-rays showed a minor scar on the kidney, but nothing at all to be concerned about. One thing was different this time. While the office has four doctors, they have only one video-cystoscope, and today was the first time my scope day had lined up with Dr. Hopkins turn to use the video. So Kathryn and I both got to watch the whole thing live and in color. Counter-intuitively it was not "yucky" at all, and being engrossed in watching distracted me from the discomfort so much that the stress balls were not even needed. The doc took his time and explained what we were seeing, which was a pretty healthy looking bladder. One unusual area near the ureter where one tumor had been, and a tiny pink spot that most likely came from the scope bumping into the bladder wall with its hot lamp. Dr. Hopkins assured me that it was nothing of concern, as CIS spots look much different - he described them as "velvety." The narrated video tour made the exam take two minutes instead of one, but no discomfort at all. Of course, urination is fire-y today and likely tomorrow, but that's the price of admission to this club! I got a copy of the CT report from the radiologist, a single antibiotic pill to take prophylactically, and we were on our way. Maybe next time I will request a video of the procedure for the hardcore blog readers out there...

All's well that ends well, and Judgment Day #3 is now in the books - ALL CLEAR!!

Judgment Day #3 - May 14, 2009

Judgment Day #3 has arrived, exactly 51 weeks plus one day since the surgery that was verified microscopically to have begun my cancer-free state. With bladder cancer, such a state must always be viewed as temporary - and very much so in the first year. The doctor will have the radiologist's report from the CT scan last Friday, and I will bring him the physical films - should he wish to see anything pointed out in the report. Add to that a cystoscopy, where he will also visually inspect my bladder to look for any new cancer growth. Last will be a urine cytology and FISH test, the results of which should be available in about a week.

Upside is 3-4 months free from medical interventions of any kind. Downside is something not to contemplate until necessary. Results to be posted here later today...

The 20 Most Intense Minutes of My Life (so far) - May 10, 2009

My doctor's office did call on Thursday to demand that I get a new CT scan ASAP. We scheduled it for Friday afternoon, and it went without drama. Now with only 4 days remaining until Judgment Day #3, I have been pretty sanguine about the whole affair. This is much different from last time, and I am not sure why - confidence or overconfidence? I think I am more secure in the outcome, whether it's the good cancer-free one or not. At least I hope that is the case. Again, there's not a lot of room in the universe for me to feel sorry for myself. Having a decent job in an awful economy while friends all around are being laid off (made redundant for you UK readers), and with a great set of health benefits to go with it - that's a lot to be thankful for. And again we have the example of Nick Vujicic, a man born without arms or legs, who is happy and grateful and doing great things with his life. You may recall Nick from this earlier post, which contains a video that is absolutely worth 5 minutes of your time.

Here's a short (2 min) rockin' good video showing Nick at the C28 concert in Temecula last year:




Why do I mention Nick again? It just so happens that he visited Utah last week, exactly 7 days before my cystoscopy, for a National Day of Prayer celebration less than 5 minutes from my workplace. I had to be there - to see and hear him in person. I went with my wife, the pastor from our church, and his wife. Nick is much more powerful in person than any videos. I have been all over the world, and I have seen a lot of things - both good and bad. Despite all of this, I have NEVER been more moved than during the 20 minutes that Nick spoke to the standing-room-only crowd, even though I had already heard most of the stories he related. Here is a man with no legs who "stands" at the gates of hell to redirect traffic. This is the attitude to take with suffering and difficulty, and I thank Nick for setting the example for me.

Confidence or Presumption? - May 4, 2009

Last week I did something I have not done since this whole cancer affair started. Twice. What was this earthshaking event? Brace yourselves: I made plans. For dinner. AFTER Judgment Day #3. And both will be paid in advance! What's the big deal, you might ask yourself. It's really quite simple.

If the doctor sees anything suspicious in his cystoscope on May 14, he will schedule me for surgery, most likely on May 20. Based on the lab results (probably May 26), the worst case scenario is radical surgery within the next 4-12 weeks. I would have to get several surgical consults, do heavy research into "deviations" (where the urine is routed and stored, plus how it's expelled), surgeons, insurance, and the like. Then 12-24 weeks of recovery. Then a new and very different (and unpleasant) lifestyle. A less draconian alternative might involve chemotherapy and/or hyperthermia, investigations of different approaches and providers - all of which are out of state, and some may be out of the country! And the best outcome would be that the lab shows nothing problematic, and we go back to our regularly scheduled program of treatments, diet, and exercise. No matter what the outcome, the chances of being able to (or even wanting to) go out socially are pretty small.

On the other hand, if all goes well on May 14, there's no big deal at all. We will go to dinner with our wine club on the following Sunday, and on June 21 we will participate in a "tailgate party" to be followed by a live play making fun of Utah. (On this last item, you have to live here a while to understand. Utah is a beautiful and strange place. And often, like Camelot in Monty Python & The Holy Grail, it is a very silly place. Details: Saturday's Voyeur

What all this means is that, for the first time, I feel confident enough in the combination of medical and alternative therapies I am employing to make plans that hinge on all going well. Up to now I have flatly refused to do anything of the kind, because the odds of a good outcome are 50%. That's still the case for the next 13 months or so, but I think the alternative therapies have improved those odds. They have certainly improved my general health and outlook on, well, everything. Yet I do wonder, am I being confident or presumptuous in this feeling? In about 10 days we will know. It would be nice to live life more than three months at a time! For the first time, I am planning on it...

In Other News - Bacon BAD, Frankincense Oil GOOD - April 23, 2009

One of my favorite food items in the world is bacon. And I haven't had any (except the fake kind made from turkey) for 10 months. According to this research, I should never have it again. A 2006 article from the American Journal of Clinical Nutrition informs us that:

"Men and women with a high intake of bacon (≥5 servings/wk) had an elevated risk of bladder cancer compared with those who never ate bacon (multivariate RR = 1.59; 95% CI = 1.06, 2.37), although the overall association was not statistically significant (P for trend = 0.06). However, the association with bacon was stronger and became statistically significant after the removal of individuals who indicated having "greatly" changed their red meat (men) or bacon (women) intake during the 10 y before baseline (multivariate RR = 2.10; 95% CI = 1.24, 3.55; P for trend = 0.006). A positive association was also detected for intake of chicken without skin, but not for chicken with skin or for other meats, including processed meats, hot dogs, and hamburgers."

AJCN Citation HERE.

While the first sentence declares no statistical significance, that's only true at the standard 95% confidence level. The p-values cited confirm that the results ARE significant at the 90% confidence level, and very significant in the smaller sample (removing people with radical dietary changes). So no bacon for me! Oddly, hot dogs (also high in nitrates that theoretically metabolize into carcinogenic nitrosamines) were not correlated. I think I shall continue to avoid them as well, just in case...

For those of you who are unaware of this fact, Oklahoma is OK. Recent research from the University of Oklahoma Health Science Center department of urology demonstrated that frankincense oil might be a viable alternative to BCG for Bladder Cancer. Their conclusion was that "frankincense oil appears to distinguish cancerous from normal bladder cells and suppress cancer cell viability. Microarray and bioinformatics analysis proposed multiple pathways that can be activated by frankincense oil to induce bladder cancer cell death. Frankincense oil might represent an alternative intravesical agent for bladder cancer treatment." You can read an abstract of the BMC Complementary and Alternative Medicine article here. Looks like it's too soon to do anything with this other than clinical trials. Thanks to Robert G in New York for the heads-up on this one.

HK in Toronto has been having a very rough time with his BCG and TUR treatments. He got a lot of reassurance from his doctor recently. HK reports, "Doctor informed me to try to be happy. I ask him when this ordeal will end. He said that this disease is chronic (Bladder superficial non-invasive cancer). So far I have not got Bladder cancer after surgery in November & July 08 TURBT. Another check-up is in May 5/09, after that in August with BCG with less amount. He is going to talk to me after Cysto in May. He said some days you can get pain, but take it easy and stay happy. Doctor also told me that 5 years of check-up is very important. ... He said please try to be happy." Apparently HK's doc is a firm believer that a good attitude is essential to recovery. For what it's worth, I concur!

And in still other news, it's probably time to be progressive and admit a female into our little Bladder Cancer Fraternity. Asya in NorCal was recently diagnosed, and has taken up blogging, even before her first TURBT - scheduled for today - Thursday, April 23. As a "bladder cancer veteran" of 14 months, it's interesting to watch Asya's mood swings parallel my own at the time - from "this will probably kill you" to "this is a minor inconvenience." To attest to the latter, Asya pre-scheduled a Dim Sum lunch celebration Saturday in anticipation of a successful outcome on today! I recall was contemplating a trip to DC the Sunday after my Thursday surgery, and I am glad I decided against it, eventually. For those that have not read the entire story, I ended up with a bladder perforation and a catheter for a whole week. Read all about it in this post. Here's hoping her outcome will be better than mine was! 

How It's Going 9 Weeks Post-BCG - April 18, 2009

Today (and lately) I feel about as near to normal as I can remember. Keep in mind that I define normal as how I felt just over a year ago before all this cancer business (or, more accurately, my awareness of it) started. Truth be told, I feel better than my old definition of normal in most respects. I have lost over 30 pounds since then, my allergy symptoms have diminished, my complexion has improved, I require less sleep, and I have more energy. I'm told I don't snore (much) any more. Blood chemistry has improved - triglycerides have dropped from 323 to 220. I eat better food, and it tastes better to me. Things I used to eat routinely don't taste as good as they used to. Stranger still, I feel better and may have a better attitude than people in general. It's all quite amazing.


Offset all this goodness with recovery from the BCG. While my reactions to each treatment were not too bad, there were side effects that lingered longer than the last series. Perhaps this was because I did not rest enough, deceived by the mild symptoms at the time. Since the last one, there have been a lot of lesser symptoms... Severe tiredness. Sensitivity and/or general discomfort in the "male area." Occasional cramping in the abdomen. Random sleeplessness. Vague abdominal soreness. Ugly and inexplicable mood swings. Frustration with the entire universe, which had not as late measured up to my standards. Nine weeks and two long weekend vacations (one to Northern California and one to Las Vegas) later and all of these are gone, while all the good stuff listed above continues on. It's very nice to not be totally exhausted at the end of each day. People cautiously ask how I am feeling, confused because I look good. I am confused also. I have to chalk it up to a factor known as common grace, with a full measure of special grace mixed in.

It's also amazing how other people characterize the source of my improvements. Several have pointed out that the exercise must be "working." While I appreciate the kind thoughts, let me debunk that myth. Most of my lifestyle changes were implemented on August 1, 2008, and most of the positive benefits were starting to be realized soon after that - well before the exercise was initiated around November 30. So while the exercise may smooth out the rough edges, it cannot be the primary source of the improvements! Besides, it still sucks. When we were in Vegas for the past several days, I refused to exercise. The casino-hotel charged $20 per person per day to use the exercise facility. Clearly they would much rather have you gambling than exercising. In any case there were far better uses of $20 each vacation day than to invest in hated exercise. Therefore I did not exercise for five days in a row - Friday through Tuesday. Started again on Wednesday, which was tough. Thursday was easy, and Friday was nearly impossible. Even though I do it first thing in the morning and ignore the effects all day, I had forgotten how tired it makes me in the evenings. Or how great it felt not to do it each day. But progress requires sacrifice, and I am up to the task. Up to DOing it, not up to enjoying it. Sigh.

It might be beneficial to characterize the other non-exercise things I have been doing - these are (singly or together) the primary reasons for my well being, and perhaps the exercise adds a little as well. Let's look at a typical day. (Click on ANY photo to enlarge)


Between Midnight and 2AM (when I get up to pee) I take 5-8 grams of PectaSol-C Modified Citrus Pectin (MCP) mixed in a shaker cup with 8-10 ounces of non-chlorinated spring water.


About 6AM I get up and drink some organic greens, also mixed in a shaker cup with 8-10 ounces of non-chlorinated spring water, to get a good dose of healthy enzymes. I chase that with some "empty stomach" supplements, namely 500mg each of L-Arginine (a vasodilator that may enhance heart and other muscle health) and L-Carnitine (helps fat metabolization and may promote heart health), and also an immune system booster - currently a mushroom-based formula. I am thinking of switching to a yeast-based beta-glucan immune booster after I run out of the mushroom pills.


After that I exercise, getting my heart into the aerobic zone (for me about 140 plus or minus 5) for 15-20 minutes. This requires a 7-9 minute warmup and is followed by a 5 minute cool down, all on my recumbent bike described in this post. I'm guessing this type of bike is not best for the bladder area, but it is the best for not aggravating my lower back, which has had chronic issues for years.


About 6:40 I spend some time sitting, reading and reflecting on universal truths. This practice also allows more time for my body to cool off before showering and preparing for the workday.


For breakfast most days (and lunch on the others) I have a nice portion of Flaxseed Oil mixed with Cottage Cheese and fresh ground flaxseeds, sweetened with stevia extract (no longer using organic agave nectar), plus fresh or frozen organic fruit added for variety. This stuff is known as FOCC, described in the previous post.


With my breakfast I take some vitamins and supplements.* A tiny aspirin as suggested in this post, a very comprehensive multivitamin, a calcium supplement (600mg), a Coenzyme Q10 supplement (100 mg), Vitamin E (200IU), and Vitamin C (500 mg).

For lunch I have a healthy, organic combination of fruits and vegetables. If any meat is involved, it's a small amount (2 slices of organic turkey breast).


In the midafternoon (around 3-4PM) I take another dose of both MCP and Greens, on an empty stomach, mixed together in a shaker cup with 8-10 ounces of non-chlorinated spring water.


Throughout the morning and day I drink 2-3 quarts of spring water, green tea, black tea, organic lemonade, or organic limeade (whatever I am in the mood for) all homemade with non-chlorinated water and sweetened with stevia extract.


Dinner is a healthy, often vegetarian affair, with organic produce. An enormous salad, a barely cooked vegetable or two, low starches, and no meats or only small portions. Breads are either multigrain or sprouted multigrain, with occasional sourdough. About 3-5 times a week I have a 6oz glass of red wine, sometimes two on weekends! An occasional white for variety.


Immediately after dinner I complete the vitamin and supplement routine* with another dose of Vitamin E (200IU), Vitamin C (500 mg), and the multivitamin, plus Omega-3 fish oil (3000mg) and a Vitamin B-12 (500 mcg).


Near bedtime for dessert, maybe 3-4 times per week, I have fresh fruit mixed into unsweetened organic yogurt with stevia extract (no longer using organic agave nectar). Or organic nuts with cheese or fruit on occasion.


Daily I also take a total of 6g of inulin fiber supplement with my meals - usually 2g with FOCC and 4g with dinner. Inulin is a soluble fiber, so it goes through the system like a sponge rather than like steel wool.


* If you would prefer a simple solution to the "with breakfast and dinner" vitamin and supplement scenario, a packet (8 pills) of Daily Advantage from DrDavidWilliams.com with breakfast and another packet with dinner, plus one CoQ10 and a tiny aspirin per day would be roughly equivalent, even better in some regards.


What does it all mean? Not much if the upcoming cystoscopy reveals new cancer growth - theoretically a 50/50 shot. Maybe something if all clear. But who knows which one, ones, or all in conjunction might be helping? Not me, for sure! But all of the above seem reasonable, are generally affordable, ans surely won't hurt anything. Even the exercise...

The Budwig Protocol - What the FOCC??? - April 3, 2009

Last December I got a comment from someone recommending the Budwig Protocol. I dismissed it at the time, having researched it briefly some time ago. Lately I've been reading a book recommended by Ed B. in Washington State. The author also speaks highly of the Budwig Protcol's central recommendation - a combination of Flaxseed Oil with Cottage Cheese that's supposed to give the body a super zap of linolenic Omega 3 fatty acids. We've all heard that these Omega-3s are good for you, and that they are found chiefly in wild fish, while linoleic Omega-6s found in red meat are supposedly the root of all evil. So eat more fish and less red meat is the mantra of the modern day dieter. Pre-dating all of this we have Dr. Johanna Budwig, a German physician and (accounts vary) a six or seven time Nobel nominee. In the 1950s she pioneered a vegetarian diet whose mainstay was quark mixed with cold pressed flax seed oil (same thing as linseed oil). All of her works are in German, and there appears to be only one or two translated to English and somewhat available - check out the Amazon Budwig Link or the link to her Diet Book. Websites praising the good Doctor and her work are legion, and all have two things in common:

1) A staggering number of text, photo, and video testimonials of how this protocol cured cancer or other horrible maladies
2) Opinions, misdirections, and outright lies presented as facts

I think it's fair to say the Budwig phenomenon has reached cult status.

So one might wonder - just because her followers play fast and loose with the facts and exhibit cult-like behavior, does that mean it's all meaningless? Originally I thought so, but the presence of such a volume of anecdotal data is nearly unprecedented. So I began picking through all the bullshit to see if I could find any kernels of truth. Dr. Budwig found that blood samples from cancer patients and victims of several other serious diseases were consistently low in phospholipids and lipoproteins. Adding fish oil to the diet in any reasonable amounts did not seem to improve the blood work. Dr. Budwig wrote, "Solid fats are not water-soluble and cannot associate with protein. They are not capable of circulating through the fine capillary networks. The blood thickens and circulation problems arise. In various studies the only substance which characterized the cancerous cells, as opposed to healthy ones, was isolated fat. When living tissue rejects some fats, the body isolates them and deposits them in places where fats are not normally found." She also added later in the text, "I succeeded in proving that those protein substances...found in quark or cottage cheese...are able to make water soluble the biological highly unsaturated flaxseed oil." The kernel of reason in the Budwig cult is that combining oil with high-sulfur proteins makes it water-soluble and enables its transport by the bloodstream and penetration through cell walls. Cells low in these oils are cancer and pre-cancerous cells,so that's where the soluble oil matrix will be drawn osmotically. Once there they promote oxygen respiration in the cells rather than fermentation - creating a toxic environment for cancer. This is the well documented Warburg Hypothesis. Thus healthy Omega-3 fats can be leveraged into the human system to where they are useful rather than sliding straight through the digestive system and forming expensive and slightly oily poop. In addition to this mechanical and metabolic (oxygen respiration) model, Dr. Budwig also postulated an electrical model - but it's not worth describing here. If true, it adds another reason that putting the right fatty acids in pre-cancerous cells is a good thing to do. Given all of this, it seems that hidden in the legend and ritual of the Budwig-ites there is a logical model that makes sense from a bio-engineering standpoint, even if the peer-reviewed evidence (if any) may be lost in history.

While I cannot claim to have done an exhaustive search, there is one place on the Internet that has a higher fact to bullshit ratio than all the others. It's the Yahoo Group for Flax Seed Oil, and you must join the group (free of charge) to access any data there. Check it out at: https://groups.yahoo.com/neo/groups/FlaxSeedOil2/info?guccounter=1. Even this site is not fully free from highly emotional inputs and pedantic pronouncements (e.g. drink sauerkraut juice first thing every morning, avoid antioxidants ?!!, never eat animal protein of any type, ect.) By and large it's pretty good.

I personally know of several folks who were near terminal with stage 5 metastasized cancer whose situations improved immediately upon ingesting the FOCC mixture. Whether it was because the Budwig model is correct, or because they were getting needed calories since chemo or radiation robbed them of appetite is unknown. And again, it's only more anecdotal evidence. I experimented with making FOCC. The flaxseed oil is very thick and viscous - as much like motor oil as anything edible. Blending it thoroughly with cottage cheese makes something thick and gooey, but not greasy or oily in any way. Supposedly this is water soluble? I added some plain water, and the results were shocking - keep adding and mixing, and the FOCC disappears into solution. This is a simple experiment, but it quickly proves the basic tenet of the protocol. Still skeptical? Try the same with motor oil, and the results will be very different. And you will likely be banned from the kitchen for life...If you are more of a bottom-line person, you will just want to know what to do. For the basic treatment, consume 1 serving (or more, if you are very sick) of the basic Flax Oil / Cottage Cheese (FOCC) mixture daily. Here's the recipe for one serving of FOCC (which tastes better than it sounds):

Add 6 tablespoons of low fat (1% or 2%) organic cottage cheese to 3 tablespoons of cold pressed flax seed oil. Blend with a stick type blender (regular blenders may overheat the mixture) until no oil can be seen - the result will be something like a heavy whipped cream or mousse consistency. Take 2 tablespoons of whole flax seeds (black or gold does not matter) and grind them in an inexpensive coffee grinder. Stir them into the FOCC mixture. The mixture will be slightly salty from the cottage cheese and slightly gritty from the flax seed hulls, but not unpleasant. Too thick for you? Stir in a splash or two of milk. Add stevia extract (no longer using organic agave nectar) to taste, and mix in fresh berries for flavor. One could also make a savory mix and add in onion or garlic powder and use as a veggie dip. Toss in red or green chili powder for a little zip. There are dozens of recipes on the Yahoo group above. This mixture is quite rich in calories - the jury is still out whether it causes weight gain on me. For those who prefer visuals, there's a mildly helpful video here: http://www.youtube.com/watch?v=RSoddptWL0s

I have decided to add a serving of the FOCC to my daily diet, substituting for eggs and toast most mornings, or providing a fairly hefty afternoon snack. With my judgment day only 7 weeks away, I need all the extra help I can get!

Associated with the basic FOCC mixture is a fairly complex diet of vegetables, juice, and other sources of natural enzymes. You can read a short summary of that diet at: http://www.positivehealth.com/article-view.php?articleid=456 I have not chosen to follow the whole protocol because it's potentially overkill for me, and my other dietary precautions address many of the same factors. Plus the fact that it's a nuisance, and appears to be more ritual than science. It certainly won't hurt you (except for the avoid antioxidants mantra).

In other news, we should all celebrate that Robert S. in New York got the "all clear" from his second TUR (with the 6-BCG ordeal in between #1 and #2). He has a cystoscopy in 3 months, and no idea if he's in for maintenance BCG or not.

An Asprin a Day Keeps Bladder Cancer Away? - March 25, 2009

My health, stamina, and well-being have improved slowly over the past three weeks. I am not getting tired in mid-afternoon early in the week, and the effect is decreased even later in the week. The 5 days in California were awesome - weather, food, wine, everything. We even got a cool rental car - a Saturn Sky, pictured here (click to enlarge). It's a real eye-catcher in red, which is my favorite color, and it drew a lot of attention from folks and their cellphone cameras. I have slowly been adding reviews to my restaurant review site, which has taken time from updates over here. In other news, our church is attempting to buy our first building and property from another church, and it's been grueling for me working that on top of the day job. The worst is over, for now, as others will be helping out a lot when (if) we go forward.

Today's topic is courtesy of Robert S. in New York, an active member of our little Bladder Cancer fraternity. Robert can use your prayers and good will as he goes in for TURBT #2 tomorrow. Memorial Sloan-Kettering prefers to do 2 TURs all the time, the second done after 6 BCGs to verify grade and staging. Oddly, they don't routinely do the chemo bake post-TUR, which is a very effective treatment with ample supporting recent evidence. So maybe having that big reputation that MS-K has isn't "all that" after all... In any event Robert is dreading that his cancer T1 might be upgraded, so let's pray that won't be the case. He passed on this news article on how a small dose of aspirin daily can not only improve your heart health and reduce heart attack risk, it also strongly correlates with increased success rates for BCG treatments. Read on for details...

NEW YORK (Reuters Health) - The use of aspirin as a cardioprotective agent significantly reduces recurrence among patients being treated for high-grade, non-muscle-invasive bladder cancer, the results of a small case-control study suggest.

The subgroup of patients with carcinoma in situ and high-grade papillary bladder cancer has a "high risk of tumour recurrence and progression and thus represents an ideal cohort for evaluating chemopreventive agents," the research team, led by Dr. Jason R. Gee at the University of Wisconsin-Madison, comments in the March issue of BJU International.

Their study cohort comprised 43 such patients treated with intravesical bacille Calmette-Guerin. Twenty were taking aspirin (81 or 325 mg/day) for cardioprotection.

The 5-year recurrence-free survival rate was 64.3% among those taking aspirin versus 26.9% among those not taking aspirin (p = 0.03). After adjusting for multiple confounders, aspirin correlated with a significant effect on recurrence rate (hazard ratio 0.179, p = 0.001).

Other independent predictors were maintenance treatment with intravesical bacille Calmette-Guerin (HR 0.233, p = 0.02) and smoking history (HR 3.199, p = 0.05).

"The results of the present study support the further investigation of aspirin and other NSAIDs as preventive agents in patients being treated for non-muscle-invasive bladder cancer," Dr. Gee and associates conclude.

My statistics training tells me that the low p values are very significant for correlation (though causation is still speculative). For instance the p value of 0.001 implies that there is less than one tenth of a percent chance that the difference between the samples is random. Pretty good analysis here, cheap and easy to implement, with benefits for your heart as well as your Bladder Cancer treatments!

How People React to Your Cancer - March 17, 2009

Two weeks from today I will "celebrate" the one-year anniversary of my bladder cancer diagnosis. Despite the feeling that it's only been a few weeks since then, nearly EVERYTHING has changed about me and my life in the last 50 weeks. There was the initial shock, two quick surgeries, the stress of awaiting lab results, BCG series, and judgment days. There was a re-ordering of priorities, physical and spiritual. There was the complete and total change in diet starting August 1. There was the addition of vitamins and supplements. There was trying to work and act like it was all no big deal. And lastly I have added (and hated) exercise. It's been a whirlwind of change. Trying to figure out when (or if) there was time to go play in between medical events, and a new appreciation that life is, indeed, very short was another new experience.

One thing that's struck me is how others react to (and have reacted to) the news of my cancer diagnosis. In reality, there are only two frames of reference that folks have available to them based on their indoctrination and experience.

1) You are going to die. It is only a matter of how soon and how awful the process.

OR

2) You are fine because the cancer has been removed and killed off, and it won't come back. Really the whole thing is over and can be forgotten about as an unpleasant episode.

What people need to know (and are afraid to ask) is whether you are in the first or second category. They desperately hope you are in the second group, so they will "fish" for you to say things that suggest that's the case. Even if you don't intend to, they will interpret anything you say to put you in category two.

Bladder Cancer is unusual in that it's hard to say you are in either category. For high grade cancer like mine, the odds are uncomfortably high for mortality. With early detection and treatment, the prognosis is improved, but not to the degree that any doctor will declare you out of the woods - ever. For low grade bladder cancer the odds are much better. But the reality of bladder cancer is this - you are NEVER going to be in the second category. I will have annual cystoscopies FOR LIFE. Because you can't ever tell people it's finished, they become very uncomfortable with the only other alternative they know - painful, ugly death.

How do people deal with the two scenarios? If they believe you to be in the first category they fell really awful. Because it is bad news, and especially because there is nothing at all that they can do to make any of it better. Seeing you just reinforces that feeling, so you become a pariah, and they will try avoid you, even though they are truly sympathetic.

On the other hand, if they believe you are in category 2, they are truly happy for you. Truth be told, they are equally happy for themselves not to have to be bothered about it. And they will treat you as they normally would, rarely if ever mentioning it.

How do I know this? Because that's exactly how I responded to people with cancer diagnoses. So rude but so true. Having been there myself less than a year ago, I can recognize it in others. Folks deal with me the very same way. Sort of a "please tell me you're in category 2, and we can get on with things..." attitude. Because of bladder cancer's long road before we know if we are ahead of the game (not quite category 2), true status of your situation makes nearly everyone unhappy and uncomfortable. And there is still nothing they can do for me outside of sympathy and prayer.

What I spend a lot of time doing is reassuring others. Since it's not over with to be forgotten about, they are fearful that I must be in a long, unpleasant Category 1 process. Frequent reassurances that things are going well are required. It turns out that dealing with my cancer is even harder on loved ones and friends than it is on me. As it turns out, there are a few resources for them. Anne Orchard wrote a book called Their Cancer - Your Journey. She left a very encouraging comment on David F.'s blog when he was wrestling with this very issue. 

Anne made the point is that there's also nothing you can do to guide others through their journey of dealing with your cancer, other than to be strong and set an example. So don't even worry about it. This means reassuring when you can, and not being bothered when some avoid you. While my situation is not a secret in the workplace, some don't even know, and I don't mention it unless there's a need. Others have convinced themselves that I'm OK, others are still worried that I will be dying soon, and some work hard to avoid me altogether. I try to take it all in stride.

One last word: narcissism. While all of us are self-centered to some degree, having cancer and what you go through and how you adapt IS all about you. Dealing with your having it and what you go through and how you adapt is not about you at all - it's about them. These are two entirely different problems requiring different paths to solution. I would argue that now I have cancer, it really IS all about me. But that fact in no way makes me more interesting.