Mental Health - June 20, 2009

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One aspect the early stages of the bladder cancer treatment regimen is that you live life a few weeks or months at a time for the first two years. Unless your diagnosis is low grade and superficial (mine was high grade and near-invasive T1), you cannot even think about resting easy or using a term like "remission" until after 2 years. And every 3 months after the initial surgeries, you get a "judgment day" of sorts via cystoscopy. The first year each all-clear is generally followed by 3 weeks of BCG maintenance therapy, so you really lose a month or 5 weeks, leaving you just 2 short months before the next judgment day. I have broken into new ground by making 1 year and being able to skip BCG last time, giving me a full 3 months off. With scheduling and whatnot it becomes about 3.5 - the entire summer. For the first couple of weeks I had a feeling of unreality, and dealing with turning 50 years old as well - no big thing as it turns out. Then I had to get some plans into motion to go and do some "normal" summer activities. Sadly our summer weather has been far from normal, raining nearly every weekend and most weekdays here in the Utah desert and mountains. Still there was no point sitting at the PC and blogging every day - which would have driven away even the most faithful of you readers I fear!

So I decided to take a couple of days off and make a 4 day weekend for an extended motorcycle ride. Of course nothing is easy. We had a long overdue TV repair come last Friday, the day of my purported departure. And rain, monsoon style, added to the disincentive. So I delayed my departure for a day, working a little from home. And the TV got fixed and the horrible green blob (see photo) is now gone. HDTV looks great again! Saturday I rode off early into the drizzle, headed Southwest to punch out of the weather. Streets were dry within half an hour, but I did have to punch through a vicious cloudburst 200 miles south for about 20 minutes. After that the weather was picture perfect for the rest of the weekend. I met my buddy Don, who lives near Carson City, Nevada, in the border town of Mesquite. We had a great meal of lamb and prime rib and red wine and enjoyed some conservative casino gaming afterward. The next morning we departed with blissfully cool and clear weather and headed for the north rim of the Grand Canyon, some 200 road miles away. Road conditions perfect, traffic light, and sun shining, we rode not too much over the limit across the NW corner of Arizona and back into Utah. Stopped for a pretty awful breakfast in Hurricane (pronounced HUR-kin by locals) and proceeded back into Arizona. At the state line we found odd community comprised of Hildale, Utah, and Colorado City, Arizona. This is the famous home of the FLDS polygamist cult. There were a couple hundred of the enormous polygamist housing compounds around, about a quarter of them unfinished and a fair number of them abandoned.

Great weather and views greeted us all the way to the Grand Canyon. While somewhat crowded, we had no issue parking and hiking a bit and taking spectacular photos. Then a journey north to Marysvale, Utah, where my wife had met her brother (who had come with his friends from Texas) for some ATV riding. Spent Monday morning ripping around the trails on the Utah mountains and having a great time with family. The rest stayed for more ATV days, but I had to hop on the bike and head home to resume work on Tuesday. Even today the mental and physical exertion required by the past weekend's 1000 mile motorcycle ride and 50 mile ATV ride continues to refresh my mind, heart, and soul. Living "normal" life and doing some of my favorite things with all of my favorite people is the best medicine in the universe. I can't recommend it highly enough.

My advice to bladder cancer patients is to set some time aside from research and treatments to experience the healing power of occasional normal life and times. It's a great pick-me-up!

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Some Proof of Concept from New Zealand - June 11, 2009

Hi folks. It's been quite a while since my last posting - over 2 weeks! I just wanted to luxuriate in the quite unexpected high from my extended 50th birthday celebration. No longer a milestone to contemplate regret, the time passage is now viewed as a gift. I trust all future ones will be the same. Now back to the subject at hand. A couple of weeks ago I got an email from a fellow named David Eliot, who lives in Whitianga, New Zealand. He has a fascinating story, and he has reached many of the same conclusions that I have in regard to using complementary therapies AND conventional medical treatments to leverage the strengths of both. I have excerpted his story below, and I invite you to read along while I comment with my own thoughts and experiences…

I have been living with a medical death sentence since January 2008 when I was diagnosed with glioma multiform blastoma stage 4 and told I had only a 10% chance of living two years. (similar to what US Senator Ted Kennedy has – SK) Writing has helped me clarify my beliefs; my belief in myself and in my understanding of the role of belief in healing and the beliefs that underpin both allopathic and alternative treatments. Often I have had to take my own advice. There have been times when I have been feeling sorry for myself or using my situation as an excuse and I have had to remember what I have written and live up to my words. I have come to realize my diagnosis is not a tragedy and my possible death is also not something to worry about. I have also come to believe I don’t need to conform to mortality statistics. You might find it hard to believe, but most days I don’t worry about having cancer or dying at all.

That’s a pretty compelling opener! Let’s dig into David’s history and see how he got to be so confident and upbeat.

I was taken to hospital mid December 2007 aged 45 due to having a grand mal seizure or fit. CT scan confirmed our fears of a brain tumor, 2.5 cm in the left parietal lobe. I had previously experienced a few discrete episodes of having difficulty talking and reading and the tumor was located in the part of my brain used for language. The tumor was on the surface of my brain so surgery was an option and was performed at the Hamilton Neurological unit in early January 2008. I was out of the ward and recovering at home within 3 days of the operation. The bad news came about two weeks later when the pathologist came home from his summer holidays, examined my slides and determined that I had glioma multiform blastoma grade 4. Medical literature describes glioma multiform blastoma (gmb) as “malignant and aggressive,” “grim,” and “inevitably fatal.” The statistical data gave a 10% chance of surviving 2 years, and that was with the “gold standard” treatment.

This diagnosis certainly qualifies as bad news indeed. It is similar to the condition that Dr. Servan-Schrieber had. I reviewed his situation briefly in this book review post.

The surgeon tried to be as uplifting as he could be given the circumstances; he said, “I know people who have lived with this disease for years.” then he thought a bit and added, “Well actually, one person and it was two years.” I was full of bravado so I said, “Well, it’s my intention to survive this 100%” and he replied that he didn’t want to give me false hope. This was where I realized my hope was my responsibility and that I would have to be the one making choices about my treatment and the possible outcomes of that treatment.

It is good that David realized this fact early on. In the USA we have come to rely solely on the opinions of the first doctor or two that we see for any condition and blindly follow their recommended courses of treatment. For minor issues this is certainly a fine option – leaving the “hard stuff” to the experts. For cancer, there is much the experts don’t know (or they often cannot keep up with current info), and you (and/or your support group) need to get up to speed on what the best therapies are, and any complementary therapies that you might want to pursue. Your doctor will rarely help at all on the latter category, and many will discourage it altogether!

Over the next few months I began to explore the truly amazing phenomena of the alternative cancer treatment bonanza that is available on the internet. I explored diets and alternate modes of treatment; I read stories of cancer survivors and the tragic stories of the many that didn’t make it. I read of miracle cures and I read the newspaper reports of practitioners of miracle cures being arrested when their patients died in hotel rooms in Bangkok (of course these patients had already been abandoned by their conventional doctors after extensive and possible destructive treatments had already failed). If you have spent any time researching this for yourself, and I bet you have, then you will no doubt have noticed that nearly everybody thinks they alone posses the truth about cancer (or any other dread disease) and that those who profess alternate viewpoints are not just wrong but most likely motivated by greed or evil intent. Conventional medical doctors discredit alternative practices and their proponents, who in turn accuse the MDs of being short-sighted, narrow minded, ignorant and puppets of pharmaceutical firms. Many go as far in their rhetoric to accuse drug firms and medical organizations of actively suppressing cures for cancer that are effective and inexpensive precisely because they are effective and inexpensive!

This, in a large nutshell, is exactly the problem that accompanies the benefit of the internet. You simply must sift through SO MUCH absolute bullshit, unsubstantiated opinion, innuendo, and outright lies to find even a small kernel of truth. And often you have to guess about those! In my case the rewards were enough to justify the efforts. David seems to be headed in the same direction.

What to believe? This was the question. Should I follow the usual path of conventional oncology and back up my surgery with a course of radiotherapy and then chemotherapy? I wasn’t that keen, especially as the scientific and statistical data gave me a 90% chance of not surviving this for very long at all - so I was really questioning why I should put myself through it. I have always considered allopathic medicine (i.e. conventional medicine-SK) to be more about the disease and the drug than the patient and the cure (and their ability to heal themselves) I was also of the opinion that chemotherapy and radiation are a sledge hammer approach. My resistance to these treatments was added to after reading the “cancer survivor” stories of others who had managed to clock up a few years of life with GMB. Although they were alive after periods of 5, 10 and in one case even 30 years after initial diagnosis, their stories indicated continual medical intervention, reoccurrences of tumor growth, resections, debulkings and multiple courses of chemotherapy. Was this quality of life?

Should I perhaps eschew conventional treatments, described as slash, burn and poison by the more embittered promoters of alternate regimes? I had already opted for the slash option (surgery) and felt better for it. (Perhaps if I hadn’t been dealing with a brain tumor I would have been slower to opt for surgery but from where I am standing now I am certainly glad I did, I doubt I would have survived the time it takes to research other options and make a sensible decision.) It seems that most people go for the standard treatments as offered by their doctors and health authorities and only turn to alternatives after these treatments fail (if they fail). By then, our hypothetical cancer sufferer has been told that there is no hope, their cancer has advanced to a near terminal stage and their body has been weakened by the radiation and chemotherapy treatments – not an ideal state to be in to begin an alternative cure regime. I reasoned that I would be better off finding an effective alternative while I was still healthy, with my immune system uncompromised by chemotherapy and my brain un-irradiated, but still I was faced with the problem of what to believe.

What to believe, indeed! A real quandary for me, and for you readers as well. Shall we believe doctors, authors, internet flacks, David Eliot, or even me? All I can do is present the evidence and logic process I used and let you folks make your own judgments. An aside here – I am fully convinced that the term “alternative” and the thought process presumed by it has done vastly more harm to non-traditional therapies than any other single element. As David says, first people try the doctors’ recommendations, and when they fail they go to an alternative. And the vast majority of the proponents of “alternative therapies” (now frequently called CAM for “Complementary Alternative Medicine”) also suggest or even demand that you blindly follow their ideas and reject all solutions proposed by the doctors. I would recommend to my readers that we consider instead the term “Complementary Therapies” because these “non-traditional” treatments can help the body tolerate some of the unwanted side effects of medical treatments, and perhaps some can even magnify the good effects. If you have cancer and fear for your life (or quality of life), limiting yourself to an either/or scenario for treatment selection seems short-sighted at best. So here’s the bottom line – YOU have to take the time to find and implement therapies that are outside of the doctors’ expertise. The docs don’t know enough in most cases to help you or do much besides discourage you. Mr. Eliot’s story gets interesting and a little weird from this point…

I could opt for a homeopathic treatment that was reporting an 80% cure rate for GMB (even grade 4) but I had never really put much faith in homeopathy before, though I wasn’t against it. I could try Ayurvedic treatments as promoted by a practitioner I knew and Dr. Deepak Chopra whose books I respected. I could change my diet, but how; macrobiotic, organic, alkaline, raw food, vegetarian, vegan? Perhaps a combination; halal organic vegetarian? (only half sure David is kidding here! – SK) But how would I get my Omega3 fish oil? How would diets combine with the treatments? For instance, homeopathy requires no onions or sour foods? Should I go for the all grape juice diet? Carrot juice is good. What about apricot kernels? They are banned in the US but used in cancer clinics in Japan and Europe. Had I considered acupuncture? Friends and family helpfully compounded the issue by bringing me their favorite remedies; my shelves bulged with fennel tea (cleansing), Tibetan gogi juice (good for everything), Himalayan salt (pink and salty) and strange contraptions that supposedly alter the electric and magnetic radiation within the house. My poor brain was in confusion. What is the truth about cancer, the medical industry and the alternative cures? Is there even a truth? Were there perhaps many truths? Each therapy or cure was backed up with either clinical studies or personal stories of diseases cured. What was the common thread through the morass of information, accusations, claims and counter claims?

Then it became clear to me: everybody believed in their cure, or they believed in their practitioner, or they believed in the power of their savior: the common thread was belief. Incidentally the woman reporting a 30 year survival rate had a history free from recurrence and gave her faith in God the credit for her fortuitous recovery!

Interesting, David! Sadly at this point you and I part ways in thinking. Your path of belief now closely follows Dr. Servan-Schreiber’s – almost makes me wonder if it’s a side effect of brain cancer…

It didn’t really matter what avenue I chose to pursue for my healing as long as I believed it was the right one. Taking this a little further I wondered; if belief appears to be the main component of a cure then why choose to believe in anything external at all? Could I have enough belief, i.e. absolute faith, in myself, my will to live and the healing properties of my body to create a cure without reliance on any diet, therapy or substance?

Wow! The power of his own ego. As big an egotist as I am (which is size XXL at least), I am sure that I don’t have the power. And anyone who dares believe so is risking a lot. It has worked for David Eliot and Servan-Schreiber so far. But if belief in anything (including oneself) is the answer, why DO anything else? Even these two recognized the foolishness of that part of their logic, and both did other things besides ego exercises to fight the cancer, and we should take a look at David’s selections…

I decided to put my belief into the Homeopathy option (I liked that they actually had a published study in a medical journal, evidence is so seductive). I would back that up with herbal supplements of Amygdalin, Selenium and Omega3 (also the fennel tea was quite nice, the gogi was revolting but worth a try!).

What David did not mention, though it is implicit, was that the above is ALL that he decided to do. No medical procedures at all. Now THAT’s quite an ego. Let’s see how it played out…

Now there was just the problem of what to say to my wife and my oncologist. Steph is a registered nurse and has faith in the medical system. From her viewpoint my decision was stupid and unscientific and just confirmed for her that I was soon to be buried. Since my diagnosis Steph had also been doing research, consulting with her medical colleagues and reading medical journal articles and they were not inspiring. One of her colleagues had even suggested that the best thing I could do was to get a doctor to write an affidavit that my condition was terminal so I could draw down my life insurance and then spend it having a bit of fun while I could! I didn’t like this idea much because the agreement would require me to die in a timely way. So we had a lot to talk about and it wasn’t easy but by the time we were due to see the oncologist I had made my decision clear and Steph was prepared to support me; I would try the alternative approach first and fall back on the orthodox treatments if there was evidence of a recurrence.

The difficulty was explaining this to my oncologist, not that he wasn’t understanding or supportive – he was. What I found difficult was maintaining my viewpoint in a formal medical setting to a doctor and in the presence of my wife, a nurse. Suddenly I found it hard to maintain faith in my chosen course of action. How could I say no to medical science and best practice while within the edifice of the hospital? I suddenly felt like my fourteen year-old self trying to explain to the school’s deputy principal why I shouldn’t have to do sports. I ended up having to do sports. Then the doctor upped the ante by presenting me with new data; a recent study which showed a 50% survival rate at two years for patients with similar conditions to mine (successful removal of tumour, no deficits, relatively young) and I began to get persuaded. Still I stuck to my original decision and my doctor agreed to support me with regular CT scans to check for tumour recurrence even though he thought it was not the best approach. (Steph had walked out of the interview by this time.)

I left feeling initially that I had made a stand for my health but the further I got from the hospital the worse I felt, I began to feel I had made a big mistake. I sat down with Steph in a nearby park and asked myself, “Why do I feel bad about this decision?” Then I realised I just wanted to be right. I had a prejudice against the treatments and didn’t want to change my mind about them. So I changed my mind and went back to the oncologist and signed up for 30 days of radiotherapy concurrent with daily chemotherapy (Tomodal or Temozolomide) followed by 6 months of further chemotherapy treatments. The initial 30 day regime was a major disturbance to my life but otherwise uneventful, except that I lost patches of hair due to the radiotherapy and became a bit depressed and tired by the end of it. I responded to the chemotherapy initially with intense nausea but this lessened in intensity and there was a period of exhaustion that kicked in about 6 weeks after the radiotherapy treatment. I am saving the alternative medications as back-up and will commence the homeopathic and herbal remedies once I am finished with the chemo.

My process (and I dare say most Americans would do the same) was pretty much the opposite - starting with the doctor recommendations and adding complementary therapies. While David started out choosing complementary therapies only and adding doctor medicine, we seem to have ended up with similar choices of a therapeutic mix. Traditional medicine supplemented with alternative therapies that seem reasonable and that we can afford. Tie all that together with faith (David’s in HIMSELF while I and others choose GOD), and you have a cancer-fighting regimen that can accomplish amazing things. Let's read the rest of David's story…

Update 24/12/2008
Well it’s been a year since my seizure and diagnosis and what a year! I am now finished with allopathic treatment, they can’t give me any more radiation and there’s no funding available for another course of chemotherapy. I don’t think I would take any even if there was. The good news is that I don’t have any indication I need any more treatment anyway. I had an MRI in late October and its findings were inconclusive, which I expected as my oncologist had been telling me for months that they would be. Also, as this was the first post-surgery MRI, there was no previous data to compare it to. The results did show some enhancement in my brain in the area of the previous tumour but there’s no telling if this indicates tumour or just scar tissue or healing activity from the radiation etc. I will be having another MRI in January and then there will be the possibility of comparing the two scans to produce more useful data. I’m expecting to see a reduction in the area of enhancement!

Physically I’m feeling pretty good. I still seem to get tired easily but I have gained the muscle mass that I lost during the radio/chemo regime and have been doing quite a bit of physical work. Mentally I sometimes find myself a bit forgetful and have difficulty finding words. Although this is not unusual I do sometimes think it is a deficit from the tumour/surgery/treatment, but it’s very mild. I am currently taking a course of homeopathic treatments for gmb though I can’t say I am experiencing any definite effects from the medication, possibly an improvement in energy levels, though I did notice them being effective at the occasional times I was experiencing headache and nausea. (but we know the effectiveness of placebos!) These homeopathies are supported by some very interesting clinical data and report a good success rate with lots of cancers including gmb.

It should be pointed out that surviving a year with David's condition is highly unusual. So SOMETHING is clearly working. How does he feel after all this?

In this description I have hardly touched on the mental and spiritual aspect of this time of my life, I will say though that I used all the tools at my disposal to manage my state so I was as honest and real as I could be with what I was feeling and my responses. There were times when I resisted and denied my condition, times when I felt depressed and hopeless and times when I was irritable and unpleasant, but overall, this experience has brought me to a great appreciation of my life and for the people in my life. I feel the most important aspect of my healing is the changing of the beliefs and attitudes I hold that could exert a negative influence on my will to live and chances of survival. I am confident that if I keep practicing a deep level of self awareness and honesty, keep putting my attention on a positive outcome and devote my energy to the service of others then I will survive, happily, for many years to come. And if I don’t, well at least I’ll have been spending my time and energy to best advantage and not been feeling miserable and sorry for myself.

Take away the new-age speak and look for the bottom line. Positive attitude, belief in the efficacy of the treatment mix, and faith (of a sort) all play a part in healing. The lastest status is that David has also written a book that emphasizes his self-belief principles and some ways that he chose to apply them. If you're into that sort of thing, feel free to check it out HERE. 

As for me, I will focus on the treatment patterns and results.

Update 22 January 2009
Good news, I had another MRI and it showed significant improvement on the previous scan in October. Whatever the area of enhancement is, it’s getting smaller, so I’m confident it’s not tumour. We are all feeling so relieved about this result, it has lifted the cloud of doubt and fear that has always been hovering around any thoughts of our future. Apart from my continuing health, and being alive when so many gmb sufferers die in the first year, this is the first medical confirmation my treatments are being effective.

Of course, I can’t determine if my good health is because of the allopathic treatment, the homeopathic treatment, my belief management and visualisations or because I’m lucky but who cares? I’m not conducting a scientific experiment, I’m striving to survive.

Well said, David. Very well said.

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.