Bladder Cancer, as we all know, is not a laughing matter. But one must admit that the things we do to detect and cure it are completely ridiculous and defy description. Professional comedian Mike Birbiglia had Bladder Cancer when he was in his late teens, and he retells the story with some probable embellishments here. Props to Steven S. in Tennessee who found this. Be advised there is no moving video, only a picture of his comedy album. So enjoy the audio.
For the record, I never got any damn muffins! What's up with that?
Showing posts with label Bladder Cancer. Show all posts
Showing posts with label Bladder Cancer. Show all posts
Judgment Day #11 on 9/11 - September 11, 2012
The procedure went quickly and the wonderful ALL CLEAR was welcome. The doctor confirmed that we would do 3 BCG treatments in October, and then no scope (or PSA test) until September 2013! This clear report now marks 52 months cancer-free, nearly 4.5 years. Keep in mind that terms like "remission" don't apply to bladder cancer for at least 10 years, so not quite halfway there yet!
This makes for a happy day, and we will start making big plans for vacation, visiting friends, travel, and whatnot right away! No more stunned period, waiting for the good news to sink in. As soon as I feel better, perhaps I will try a happy dance.
Some details of the procedure follow, so those with weak constitutions may want to stop reading here...
There was some discomfort with the procedure this time, despite being able to use the very nice Storz video scope setup for the 3rd time in a row. The doc started quickly, but I was ready - fully relaxed from deep breathing and hypnosis techniques. No Xylocaine prep, and little if any lube used this time. Frankly the whole ordeal (maybe 30 seconds) hurt like hell. Even pointing my toes up and down alternately and focusing attention on the screen did not help. I was able to stay relaxed and breathe through it. Unsurprisingly my first urination at home (not counting voiding the saline solution at the office) showed a slight trace of blood (microhematuria), although the urine was nicely alkaline in pH. It had been alkaline all of yesterday, so I think the stress was effectively managed. For future scopes I plan to ask for the Xylocaine prep - even though it is messy, it helps a lot. Not necessary for BCGs though!
Postmortem: VERY severe symptoms (both razor blades and fire) began about 3 hours after the scope and remained with full pain levels unabated for 48 hours. Began to ease a bit after that.
Final Postmortem: Now pretty much back to normal FOUR full 24-hour days after the scope. (still minor discomforts on Friday evening, at 3.5 days)
Bladder Cancer Overview from M.D. Anderson - August 31, 2011
Deborah Thomas from M.D. Anderson Medical Center in Texas sent me the following podcast about Bladder Cancer. It is just under 14 minutes long and is a good overview of the facts and statistics surrounding bladder cancer, diagnosis, symptoms, and treatment.
I think you will find it well worth your time!
I think you will find it well worth your time!
Bladder Cancer Awareness - April 30, 2011
Next Saturday, May 7, 2011, will be Bladder Cancer Awareness Day in the United States. One primary activity, sponsored by the Bladder Cancer Advocacy Network (BCAN), will be a "Walk for Bladder Cancer - Leading the way to a cure." The purposes of the day and the walk are simple and clear - to raise "awareness" about bladder cancer in the community and to raise money for BCAN. 
The purpose of BCAN is equally simple and clear: to foster communication, education, and still more "awareness" about bladder cancer. And perhaps more importantly "to raise funds for bladder cancer research and education."
So what is all this talk of awareness? For myself, awareness is a binomial distribution. Before I was diagnosed with Bladder Cancer I was blissfully unaware of its existence - my awareness was zero. Now, of course, I am aware of it literally every time I need to urinate, every time I eat the foods I should (and avoid ones I shouldn't), every time I take a supplement or vitamin, and every time I look at this blog. My awareness is pretty pervasive - near 100%. And even though Bladder Cancer is the #4 or #5 most prevalent form of cancer (depending on who is counting from day to day), many people are indeed fully unaware as I formerly was.
Contrast my impression above with a survey of more than 1600 people conducted last May in the UK. Half of those surveyed had no idea what the most common cause of bladder cancer might be. A quarter had no idea about the warning signs for the disease, with 18% guessing that the most common cause of bladder cancer was drinking too much alcohol. Only 5% correctly cited smoking and only 1% mentioned using chemicals at work - the factors which actually are main causes of bladder cancer. Industries involving dye, rubber, aluminum and leather are linked to an increased risk of bladder cancer. And the most common symptom or warning sign for bladder cancer is blood in the urine, but only half of those surveyed knew about this.
I digested the information and the messages for quite a while. Now that I am painfully aware of Bladder Cancer, what has changed? My lifestyle certainly is healthier now. But if I did not have it and was equally aware, what difference would it have made? I am pretty sure that without the threat of imminent and painful death, I would have changed nothing in my lifestyle. So that is why I often tell folks that bladder cancer may be the best thing that ever happened to me. Certainly it made my cousin Rick put down cigarettes forever - something he would have told you was not even possible. So awareness makes sense for those that have the affliction, but what sense does it make for those that don't? Some other factor must be hidden beneath all this awareness talk.
Both the UK survey and the BCAN literature point to the same conclusion - one that seems to be a default conclusion for nearly every problem today in western society. Awareness must be raised so that (government) funding can be increased to address the underlying problems. The equation is simple: low awareness = low government priority = proportionally lower government funding. I think it pays to be honest. While education and information and communication are cited as the goals, these noble factors are really the means to an end - to increase awareness and increase proportional government funding. Private funding increases are also welcome, but we all know the real money these days comes from the government. And that's what the awareness is all about.
Please don't think I am trying to rain on anybody's parade here. Given all the odious things that governments overspend money on these days, doing something that might benefit me directly seems like a good trade. I simply think that the goal should be more clearly stated. And given the state of most government deficits these days, spending more on anything at all may well be questionable. Still as common as it is, bladder cancer is not really difficult to understand, diagnose, or treat. As such, many doctors (like my second opinion guy Dr. X) find themselves drawn to fields such as liver or testicular cancer - as they present unsolved problems and intellectual challenges not found in boring stuff like bladder cancer. So guys like Dr. Lamm who pioneered the BCG treatment continue to dabble and experiment with new ideas, but younger physicians tend to focus on more elegant problems. I suppose raising awareness and associated funding might serve as a carrot to draw some of these bright minds into new research areas. And to the degree that funding is moved from something awful, it could be a net gain.
As you can tell, I remain a bit ambivalent about it all. Not because my danger period is past - I shall have scopes once per year for LIFE to remind me, plus BCG treatments until the year 2020 (if all goes well).
Just because it seems like such a futile and hopeless game to chase after government money for your favorite causes. But if awareness is your thing, next Saturday is your day. Advertise, walk, donate, pray, write blogs, or whatever. And you may as well reach out to someone you love and give their bladder a gentle squeeze. Trust me - that will get a lot of attention and awareness going!
The purpose of BCAN is equally simple and clear: to foster communication, education, and still more "awareness" about bladder cancer. And perhaps more importantly "to raise funds for bladder cancer research and education."So what is all this talk of awareness? For myself, awareness is a binomial distribution. Before I was diagnosed with Bladder Cancer I was blissfully unaware of its existence - my awareness was zero. Now, of course, I am aware of it literally every time I need to urinate, every time I eat the foods I should (and avoid ones I shouldn't), every time I take a supplement or vitamin, and every time I look at this blog. My awareness is pretty pervasive - near 100%. And even though Bladder Cancer is the #4 or #5 most prevalent form of cancer (depending on who is counting from day to day), many people are indeed fully unaware as I formerly was.
Contrast my impression above with a survey of more than 1600 people conducted last May in the UK. Half of those surveyed had no idea what the most common cause of bladder cancer might be. A quarter had no idea about the warning signs for the disease, with 18% guessing that the most common cause of bladder cancer was drinking too much alcohol. Only 5% correctly cited smoking and only 1% mentioned using chemicals at work - the factors which actually are main causes of bladder cancer. Industries involving dye, rubber, aluminum and leather are linked to an increased risk of bladder cancer. And the most common symptom or warning sign for bladder cancer is blood in the urine, but only half of those surveyed knew about this.
I digested the information and the messages for quite a while. Now that I am painfully aware of Bladder Cancer, what has changed? My lifestyle certainly is healthier now. But if I did not have it and was equally aware, what difference would it have made? I am pretty sure that without the threat of imminent and painful death, I would have changed nothing in my lifestyle. So that is why I often tell folks that bladder cancer may be the best thing that ever happened to me. Certainly it made my cousin Rick put down cigarettes forever - something he would have told you was not even possible. So awareness makes sense for those that have the affliction, but what sense does it make for those that don't? Some other factor must be hidden beneath all this awareness talk.
Both the UK survey and the BCAN literature point to the same conclusion - one that seems to be a default conclusion for nearly every problem today in western society. Awareness must be raised so that (government) funding can be increased to address the underlying problems. The equation is simple: low awareness = low government priority = proportionally lower government funding. I think it pays to be honest. While education and information and communication are cited as the goals, these noble factors are really the means to an end - to increase awareness and increase proportional government funding. Private funding increases are also welcome, but we all know the real money these days comes from the government. And that's what the awareness is all about.
Please don't think I am trying to rain on anybody's parade here. Given all the odious things that governments overspend money on these days, doing something that might benefit me directly seems like a good trade. I simply think that the goal should be more clearly stated. And given the state of most government deficits these days, spending more on anything at all may well be questionable. Still as common as it is, bladder cancer is not really difficult to understand, diagnose, or treat. As such, many doctors (like my second opinion guy Dr. X) find themselves drawn to fields such as liver or testicular cancer - as they present unsolved problems and intellectual challenges not found in boring stuff like bladder cancer. So guys like Dr. Lamm who pioneered the BCG treatment continue to dabble and experiment with new ideas, but younger physicians tend to focus on more elegant problems. I suppose raising awareness and associated funding might serve as a carrot to draw some of these bright minds into new research areas. And to the degree that funding is moved from something awful, it could be a net gain.
As you can tell, I remain a bit ambivalent about it all. Not because my danger period is past - I shall have scopes once per year for LIFE to remind me, plus BCG treatments until the year 2020 (if all goes well).
Just because it seems like such a futile and hopeless game to chase after government money for your favorite causes. But if awareness is your thing, next Saturday is your day. Advertise, walk, donate, pray, write blogs, or whatever. And you may as well reach out to someone you love and give their bladder a gentle squeeze. Trust me - that will get a lot of attention and awareness going!
Bladder Cancer and Diet/Exercise Reports - April 9, 2011
I am a bit surprised at how long it's been since my last update. As I tell most folks, "No news is good news." It is a bit of an adjustment that must be made. 
During the first 30 months having bladder cancer, learning about it, and dealing with it was pretty much a daily occupation. Now having just passed 33 months cancer free with no BCG to occupy the month after diagnosis, I have until September 8 until I really have to think about bladder cancer again. For the first time since this journey began, I have NOT thought about bladder cancer very much at all. I have had pretty good updates from folks in our little "bladder cancer fraternity" to be thankful for, but somehow it is a bit more distant from me now. Good news is meant to be shared, so let's do that:
Ken H. from Richmond, Virginia reports ALL CLEAR cystoscopy following 6 initial BCGs. He begins maintenance if his next cysto is clear in 4 months.
Ben F. from Baton Rouge, Louisiana has completed two TURBTs and begins his initial 6 BCGs next week on April 14. He has been asking questions and getting mentally prepared. I advised him not to judge the experience based on the first two or three which are pretty easy.
Roy B. in Alabama had clear biopsies in February and clear cysto in March, and so he gets to experience 3 maintenance BCGs in April.
Brian S. in Atlanta, Georgia is having a miserable time recovering after BCG with constant urination throughout the night. Delayed cysto until swelling and pain diminished, but clear cysto and FISH for the first time - now 36 months in to the process.
Ronnie in Colorado Springs reports ALL CLEAR for 11 months now. No BCG maintenance for him, but cystos every 6 months for a while.
David F. in England has nearly forgotten about having cancer, keeping himself busy with starting a new business. But the deaths of many friends and acquaintances from other forms of cancer serve as a near-constant reminder. David and I agree, if one has to have cancer, bladder cancer is a pretty good option. Still David notes the effect his cancer experience has had on his day to day life and modus operandi. Some good and some bad, and all difficult to grasp or explain.
HK in Toronto has had several months off after a miserable reaction to BCG. He has a cysto coming up next week on Tuesday, April 12, and he would appreciate all your prayers and positive support.
The real warriors are Joe and Heidi in Washington state. He has bladder cancer and she has breast cancer, and they are dealing with both constantly. Joe also reports burning and urgency as much as 2 weeks after his final BCG, which is a bit rare and unfortunate, but not "out of family" as symptoms go. He also has a cysto next Tuesday, April 12.
Turning back to what's up with me, as I note that blogs are in general a narcissistic outlet, most long-time readers are aware that I made several quite radical dietary changes - increasing veggies and reducing meat to a 2:1 by volume ratio, going with organics and all natural foods, eliminating pork and shellfish, eliminating (mostly) sugar and simple starches, eliminating all sweeteners except stevia extract, eliminating all preservative-containing foods, eliminating deep-fried foods, adding vitamins and supplements, and even quite reluctantly adding routine exercise three times per week. My weight dropped dramatically, then stopped and increased back to around 230. Not nearly as bad as before cancer, but still visibly overweight. Minor tweaks in the exercise routine made it less miserable and almost bearable, but not something I enjoy or look forward to. Net effect has been to hover around 230 pounds (16.4 stone) since Christmas of 2009. Although there was considerable weight gain in March as we prepared to do something new. So the diet worked to a point, and I believe it has had a significant corollary contribution to my improved attitude and cancer-free state. But clearly, while it has made me less fat, it has not made me thin - not that thin was ever the primary goal.
Anyone who has tried diets knows they always work quite well as long as you stay on them. But cheating inevitably happens, and always leads to more cheating, which ultimately leads to dumping the whole diet in frustration.
We are trying a new diet, or eating pattern, that addresses this key failure mode. The diet is VERY strict for six days per week. Limited types of low-glycemic carbohydrates are permitted, no dairy or cheese, no starch, no sugar, no artificial sweeteners, plus all the no-no's listed above (for cancer purposes). Almost like a super-strict form of Atkins. Given all the restrictions, there is not a ton of stuff left to eat. How could anybody survive this for long without cheating? Let me tell you about the seventh day. Day 7 of each week is a built-in cheat day. On Day 7 you are permitted to eat ANYTHING in ANY QUANTITY without limits. I still follow the cancer no-no's (except for sugar and starch) on Day 7. But everything else is fair game. Insanity you say? Of course, but insanity for a purpose.
So how does one survive during the week of six days? Day 1 is easy, having indulged nearly every food fantasy the day before you feel a bit "hung over" and don't want anything bad. The first week I did not eat at all until after noon. Day 2 - 6 you will have various desires and cravings that can easily be fought off because of two simple factors:
What about the hated exercise? Still 3 days per week, but the exercise part is also quite simple, not aerobic, and easily accomplished without any hassle or misery in 25 minutes or less.
So - a diet where you eat more, are never hungry, cheat routinely without limits, and exercise easier for less minutes. Can't possibly work. The purest form of insanity. Stupid, really. Just my sort of thing! I am a big fan of counter-intuitive solutions that work, so I resolved to give it a try. Plan was to implement after my last clear cysto and weekend of celebration thereafter. Goals were set for six months trial: lose 2.5 clothing sizes (to pants waist size 34 inches) and lose 10% bodyfat. Decided to do it right and have bodyfat measured professionally using the Bodpod system. Cost $20 apiece at the local university health sciences center.
I am starting at 32.0% and shooting for 22.0 or less. My wife's numbers and targets are classified and will never be disclosed here. My weight goal? None. Think about it - if you could drop over two clothing sizes and 10% bodyfat, would you care if you gained 50 pounds in the process? My expectation is that I won't gain weight but lose it, but it's pointless if the new weight does not LOOK better as it is distributed around your frame.
Before we get to the punch line, let me tell you about cheat days. At the end of the first week I had an extensive list to execute. Did not accomplish all of it but here's what happened:
Breakfast 1 - normal diet breakfast (same as other days) to set the stage
Breakfast 2 - Six Krispy Kreme donuts (assorted) and a quart of whole milk
Lunch 1 - Chocolate milkshake of the same type I had on the day I was diagnosed (1.75 quarts worth) plus a can of Pringle's Original
Lunch 2 - Half a box of Girl Scout thin mint cookies
Dinner - Veritable feast at Frida Bistro with drinks, wine and dessert
The subsequent cheat days have been along the same lines, substituting things like half a large apple pie and ice cream, pizza, beer, etc. The fact that I have a limited capacity has made me become much more selective in what I choose to eat to cheat. This week we have moved cheat day to Sunday to accommodate a dinner out with friends. Other than requiring advance planning and procurement (for both days 1-6 and day 7), the diet has been pretty simple to implement and follow strictly. If you get the impression that I am completely guilt free and a bit proud of my larcenous gluttony, you are exactly correct!
By now many have stopped reading, assuming (perhaps correctly) that I am some sort of wacko. And also assuming that such abject foolishness could never possibly work to achieve the desired results. While it's early days yet, we have objectively measured evidence to the contrary (at least on this second point). The tale of the tape and scale:
My wife, who is thin to start with, is also pleased with her results to date. Since she bears the brunt of the food preparation hassles, this is a very good thing!
Again, it is MUCH too early to declare success or victory. Stay tuned for future updates!
During the first 30 months having bladder cancer, learning about it, and dealing with it was pretty much a daily occupation. Now having just passed 33 months cancer free with no BCG to occupy the month after diagnosis, I have until September 8 until I really have to think about bladder cancer again. For the first time since this journey began, I have NOT thought about bladder cancer very much at all. I have had pretty good updates from folks in our little "bladder cancer fraternity" to be thankful for, but somehow it is a bit more distant from me now. Good news is meant to be shared, so let's do that:Ken H. from Richmond, Virginia reports ALL CLEAR cystoscopy following 6 initial BCGs. He begins maintenance if his next cysto is clear in 4 months.
Ben F. from Baton Rouge, Louisiana has completed two TURBTs and begins his initial 6 BCGs next week on April 14. He has been asking questions and getting mentally prepared. I advised him not to judge the experience based on the first two or three which are pretty easy.
Roy B. in Alabama had clear biopsies in February and clear cysto in March, and so he gets to experience 3 maintenance BCGs in April.
Brian S. in Atlanta, Georgia is having a miserable time recovering after BCG with constant urination throughout the night. Delayed cysto until swelling and pain diminished, but clear cysto and FISH for the first time - now 36 months in to the process.
Ronnie in Colorado Springs reports ALL CLEAR for 11 months now. No BCG maintenance for him, but cystos every 6 months for a while.
David F. in England has nearly forgotten about having cancer, keeping himself busy with starting a new business. But the deaths of many friends and acquaintances from other forms of cancer serve as a near-constant reminder. David and I agree, if one has to have cancer, bladder cancer is a pretty good option. Still David notes the effect his cancer experience has had on his day to day life and modus operandi. Some good and some bad, and all difficult to grasp or explain.
HK in Toronto has had several months off after a miserable reaction to BCG. He has a cysto coming up next week on Tuesday, April 12, and he would appreciate all your prayers and positive support.
The real warriors are Joe and Heidi in Washington state. He has bladder cancer and she has breast cancer, and they are dealing with both constantly. Joe also reports burning and urgency as much as 2 weeks after his final BCG, which is a bit rare and unfortunate, but not "out of family" as symptoms go. He also has a cysto next Tuesday, April 12.
Turning back to what's up with me, as I note that blogs are in general a narcissistic outlet, most long-time readers are aware that I made several quite radical dietary changes - increasing veggies and reducing meat to a 2:1 by volume ratio, going with organics and all natural foods, eliminating pork and shellfish, eliminating (mostly) sugar and simple starches, eliminating all sweeteners except stevia extract, eliminating all preservative-containing foods, eliminating deep-fried foods, adding vitamins and supplements, and even quite reluctantly adding routine exercise three times per week. My weight dropped dramatically, then stopped and increased back to around 230. Not nearly as bad as before cancer, but still visibly overweight. Minor tweaks in the exercise routine made it less miserable and almost bearable, but not something I enjoy or look forward to. Net effect has been to hover around 230 pounds (16.4 stone) since Christmas of 2009. Although there was considerable weight gain in March as we prepared to do something new. So the diet worked to a point, and I believe it has had a significant corollary contribution to my improved attitude and cancer-free state. But clearly, while it has made me less fat, it has not made me thin - not that thin was ever the primary goal.
Anyone who has tried diets knows they always work quite well as long as you stay on them. But cheating inevitably happens, and always leads to more cheating, which ultimately leads to dumping the whole diet in frustration.
We are trying a new diet, or eating pattern, that addresses this key failure mode. The diet is VERY strict for six days per week. Limited types of low-glycemic carbohydrates are permitted, no dairy or cheese, no starch, no sugar, no artificial sweeteners, plus all the no-no's listed above (for cancer purposes). Almost like a super-strict form of Atkins. Given all the restrictions, there is not a ton of stuff left to eat. How could anybody survive this for long without cheating? Let me tell you about the seventh day. Day 7 of each week is a built-in cheat day. On Day 7 you are permitted to eat ANYTHING in ANY QUANTITY without limits. I still follow the cancer no-no's (except for sugar and starch) on Day 7. But everything else is fair game. Insanity you say? Of course, but insanity for a purpose.So how does one survive during the week of six days? Day 1 is easy, having indulged nearly every food fantasy the day before you feel a bit "hung over" and don't want anything bad. The first week I did not eat at all until after noon. Day 2 - 6 you will have various desires and cravings that can easily be fought off because of two simple factors:
1) You eat quite a bit of the allowed foods - four meals per day, and you are never really hungryI make a list of things I want during the week to eat on Saturday, my Day 7. I quickly found that what you WANT to eat on Day 7 is quite a bit more than my capacity to stuff it in - a shock to anybody who has seen me pile in the food.
2) Anything you crave you CAN HAVE within a few short days
What about the hated exercise? Still 3 days per week, but the exercise part is also quite simple, not aerobic, and easily accomplished without any hassle or misery in 25 minutes or less.
So - a diet where you eat more, are never hungry, cheat routinely without limits, and exercise easier for less minutes. Can't possibly work. The purest form of insanity. Stupid, really. Just my sort of thing! I am a big fan of counter-intuitive solutions that work, so I resolved to give it a try. Plan was to implement after my last clear cysto and weekend of celebration thereafter. Goals were set for six months trial: lose 2.5 clothing sizes (to pants waist size 34 inches) and lose 10% bodyfat. Decided to do it right and have bodyfat measured professionally using the Bodpod system. Cost $20 apiece at the local university health sciences center.
I am starting at 32.0% and shooting for 22.0 or less. My wife's numbers and targets are classified and will never be disclosed here. My weight goal? None. Think about it - if you could drop over two clothing sizes and 10% bodyfat, would you care if you gained 50 pounds in the process? My expectation is that I won't gain weight but lose it, but it's pointless if the new weight does not LOOK better as it is distributed around your frame.Before we get to the punch line, let me tell you about cheat days. At the end of the first week I had an extensive list to execute. Did not accomplish all of it but here's what happened:
Breakfast 1 - normal diet breakfast (same as other days) to set the stage
Breakfast 2 - Six Krispy Kreme donuts (assorted) and a quart of whole milk
Lunch 1 - Chocolate milkshake of the same type I had on the day I was diagnosed (1.75 quarts worth) plus a can of Pringle's Original
Lunch 2 - Half a box of Girl Scout thin mint cookies
Dinner - Veritable feast at Frida Bistro with drinks, wine and dessert
The subsequent cheat days have been along the same lines, substituting things like half a large apple pie and ice cream, pizza, beer, etc. The fact that I have a limited capacity has made me become much more selective in what I choose to eat to cheat. This week we have moved cheat day to Sunday to accommodate a dinner out with friends. Other than requiring advance planning and procurement (for both days 1-6 and day 7), the diet has been pretty simple to implement and follow strictly. If you get the impression that I am completely guilt free and a bit proud of my larcenous gluttony, you are exactly correct!
By now many have stopped reading, assuming (perhaps correctly) that I am some sort of wacko. And also assuming that such abject foolishness could never possibly work to achieve the desired results. While it's early days yet, we have objectively measured evidence to the contrary (at least on this second point). The tale of the tape and scale:
Weeks completed: 5 (including 5 full days of travel to Florida)
Non-approved cheating: Zero, zip, zilch, nada, none whatsoever
Inches LOST: one half clothing size (38 pants now fit quite neatly, was spilling over before with muffin-top extremis)
Bodyfat: Due to expense, will not re-measure until September
Pounds LOST (because everyone wants to know): 12 (yes TWELVE)
My wife, who is thin to start with, is also pleased with her results to date. Since she bears the brunt of the food preparation hassles, this is a very good thing!
Again, it is MUCH too early to declare success or victory. Stay tuned for future updates!
Judgment Day #8 - ALL CLEAR AGAIN! - March 3, 2011
JUDGMENT DAY arrived with a bang - literally! The bright early morning became suddenly dark at 7:30AM when a very severe storm cell hovered over our house and we were circled about with lightning and thunder for about 15 minutes - most unusual for this time of year. 
The streets (clean the night before) were covered with snow and ice, but warmer temperatures cleared it up before we headed down the mountain to the doctor's office. Still dark clouds lingered around the mountains and out in the salt flats, heightening my natural sense of impending doom. Most of my friends and co-workers do not understand my attitude. Having been cancer-free for over two years, they all say, "You will be fine." And of course I will be, whether or not the cancer returns.
But perhaps I should explain why I do not choose to be overly optimistic prior to judgment days. There are two primary reasons, one statistical and one psychological.
1) The statistical probability of recurrence of bladder cancer within 10 years is very high - over 80-85%. This terrible mathematical fact is offset by the happy circumstance that I have gone two years without recurrence, meaning that a recurrence will most likely not be life-threatening or particularly difficult to deal with - perhaps just another TURBT surgery and continued BCG treatments. Another offsetting factor is that there is about a 50% success rate with BCG treatments, so the chance of discovering cancer at each cystoscopy event is really 40-43%. Perhaps less, as there are no statistical data to support the benefits (or non-benefits) from FOCC, dietary changes, exercise, PectaSol-C, vitamins, or supplements. Roughly speaking, it's slightly better than a flip of a coin each time I go in for an exam whether or not cancer will be detected. Bladder Cancer is not a disease where one says "they got it all" and you go on with your life having been cured. It is a constant threat, monitored by annual cystoscopies FOR LIFE. That said, I am delighted to have Bladder Cancer rather than something more aggressive and/or isolated.
2) If one convinces oneself that all will be OK and the outcome is negative, it can be a crushing blow. I would much rather be realistic about probable outcomes and be psychologically ready to deal with them all. Thereby a positive, healthy, and beneficial attitude may be maintained throughout the process. That said, you really don't want to be around me much the week before an exam!
Back to our story - earlier in the week (on Monday) I called the doctor's office to inquire why they had not scheduled me for a CT scan yet. The young lady in charge quickly verified (through their new online chart system) that I was indeed due for it, and promised to make it happen quickly. After the usual bungling incompetence (that seems to afflict ALL medical staff) I ended up with an appointment at 10:30 on Tuesday, creating a conflict with the only work meeting I had for the day. Oh well. I arrived at the imaging office, chosen as a cost-saving alternative to the hospital, a few minutes early, where my paperwork was taken and processed. I was shown to a dressing area to change into some very comfortable surgical scrubs - another great improvement over the hospital and its gowns. On a hunch, I asked the technician to verify the exact X-ray screens I was to receive. This set off a multi-way conversation between the radiologist and members of the imaging lab staff with members of the doctor's office staff, and it ended up with Dr. Hopkins being called to the phone personally to discuss the matter. Apparently technology is changing and improving, and the imaging experts convinced the doctor to choose a slightly different diagnostic set that meant less X-rays for me - a good thing. Unfortunately the smaller set still needed intravenous (IV) iodine contrast and its associated risks and nasty, metallic aftertaste (even though I did not drink it)! This discussion caused some delay, but the X-ray machine was quickly set to spin mode and I was on my way with both films and CD in hand in short order.
Part of the pre-CT instructions were to fast at least 4 hours beforehand and not to have any liquids for 1 hour prior. So I found myself hungry and thirsty afterward, still tasting metal at the back of my throat. Heading north back to work I passed through Salt Lake City. I decided to head to a deli for a sandwich, but recalling the difficult parking, crowds, and standing in line required, I opted to swing by Frida Bistro to see if they were open for lunch. Good call - as they were open, not busy, and eager to provide outstanding gourmet fare at a reasonable price in a timely fashion. It was so good that I resolved to return this weekend with my wife for a celebratory dinner.
Thursday's exam was scheduled late in the afternoon - not my first choice, as it makes for half a day of getting ready. I quit work early yesterday, went to bed early and exhausted, and arose still feeling tired. Spent the morning doing routine chores, reading and answering emails, and practicing my deep breathing for relaxation. All went well and time flew by quickly. Uncharacteristically I went with a full breakfast, but by 1PM I was starting to feel nauseous and chose to skip lunch. More deep breathing overcame the nausea, and I gathered my paperwork and thoughts and climbed into the passenger seat for the drive down the mountain and into Salt Lake City. I read the comic page from several weeks worth of newspapers as we made the 50 minute drive in silence.
The doctor's office was jammed with a line to check in. There are four urologists and two physician's assistants in the practice, and it was my good providence that Dr. Hopkins was the only one not running behind schedule late in the afternoon. We were processed in and shown to an exam room within minutes. After the obligatory urine sample delivery and another 5 minute wait we were taken to the procedure room. Relieved to see the monitor sitting beside the scope, we looked forward to witnessing the procedure. After less than 10 minutes (a new record) Dr. Hopkins came in, shook hands, and reviewed my case: "Your X-rays look great. Some scarring on one kidney, probably from an earlier infection - no problem there. Diagnosed in 2008, clear for 2 years, six months between cystoscopies, 12 months between BCGs. So no BCG this time, but we will do it in September. PSA last checked last September?" I corrected him that it was January, 2010. " want those done annually, so go get it again," was his response.
Thirty seconds later he began the exam and an interminable 60 seconds more later he was complete. "All clear - no cancer." And with a promise that we could schedule both cysto and BCGs in September he was gone.
It's hard to explain how one feels after these exams and news. I envision myself doing a fist pump, making an exclamation, offering a prayer of thanks. In reality it is an anticlimax. I told my wife it feels like just after exercise. Tired, not exhilarated, a load lifted. I just wanted to relax, alone, in a dark room for a while. But practical matters preclude that. For one, your junk HURTS a bit, and there is a mess to clean up, clothing to wear, saline solution to be discharged into the toilet, a prophylactic antibiotic pill to take, and future appointments to schedule. Then there is an hour drive home, during which I became ravenously hungry. This problem now had a simple solution in the form of a new, convenient location of the In-N-Out Burger chain.
The buns are not on the diet, but an order "protein style" gets you delicious burgers delivered in a lettuce wrap. No fries, sugary soft drinks, or shakes for us. It was a pleasant respite.
Sun broke out before we got home, lightening the landscape and my mood. Reality had begun to sink in. 33 months cancer free! 6 months of freedom from medical intervention. It will be a good summer indeed! In the meantime we have the joy of enthusiasm mildly offset by the fiery pain of urination for a day or so...
I started sending out emails to various parties when I arrived home, and I learned that Brian S. in Atlanta had a rough time. Too much pain, swelling, and bleeding to do his cystoscopy. They will give him drugs to try to repair his bladder and try again in a month, while he is left to wonder if the cancer has come back or not. Next up we have HK in Toronto with a cysto on April 12, and David F. in England around the same timeframe. Prayers and support are always appreciated for all and by all. I received contacts from all over the world with prayers and good wishes for today. I thank you all for your support!
The streets (clean the night before) were covered with snow and ice, but warmer temperatures cleared it up before we headed down the mountain to the doctor's office. Still dark clouds lingered around the mountains and out in the salt flats, heightening my natural sense of impending doom. Most of my friends and co-workers do not understand my attitude. Having been cancer-free for over two years, they all say, "You will be fine." And of course I will be, whether or not the cancer returns.But perhaps I should explain why I do not choose to be overly optimistic prior to judgment days. There are two primary reasons, one statistical and one psychological.
1) The statistical probability of recurrence of bladder cancer within 10 years is very high - over 80-85%. This terrible mathematical fact is offset by the happy circumstance that I have gone two years without recurrence, meaning that a recurrence will most likely not be life-threatening or particularly difficult to deal with - perhaps just another TURBT surgery and continued BCG treatments. Another offsetting factor is that there is about a 50% success rate with BCG treatments, so the chance of discovering cancer at each cystoscopy event is really 40-43%. Perhaps less, as there are no statistical data to support the benefits (or non-benefits) from FOCC, dietary changes, exercise, PectaSol-C, vitamins, or supplements. Roughly speaking, it's slightly better than a flip of a coin each time I go in for an exam whether or not cancer will be detected. Bladder Cancer is not a disease where one says "they got it all" and you go on with your life having been cured. It is a constant threat, monitored by annual cystoscopies FOR LIFE. That said, I am delighted to have Bladder Cancer rather than something more aggressive and/or isolated.
2) If one convinces oneself that all will be OK and the outcome is negative, it can be a crushing blow. I would much rather be realistic about probable outcomes and be psychologically ready to deal with them all. Thereby a positive, healthy, and beneficial attitude may be maintained throughout the process. That said, you really don't want to be around me much the week before an exam!
Back to our story - earlier in the week (on Monday) I called the doctor's office to inquire why they had not scheduled me for a CT scan yet. The young lady in charge quickly verified (through their new online chart system) that I was indeed due for it, and promised to make it happen quickly. After the usual bungling incompetence (that seems to afflict ALL medical staff) I ended up with an appointment at 10:30 on Tuesday, creating a conflict with the only work meeting I had for the day. Oh well. I arrived at the imaging office, chosen as a cost-saving alternative to the hospital, a few minutes early, where my paperwork was taken and processed. I was shown to a dressing area to change into some very comfortable surgical scrubs - another great improvement over the hospital and its gowns. On a hunch, I asked the technician to verify the exact X-ray screens I was to receive. This set off a multi-way conversation between the radiologist and members of the imaging lab staff with members of the doctor's office staff, and it ended up with Dr. Hopkins being called to the phone personally to discuss the matter. Apparently technology is changing and improving, and the imaging experts convinced the doctor to choose a slightly different diagnostic set that meant less X-rays for me - a good thing. Unfortunately the smaller set still needed intravenous (IV) iodine contrast and its associated risks and nasty, metallic aftertaste (even though I did not drink it)! This discussion caused some delay, but the X-ray machine was quickly set to spin mode and I was on my way with both films and CD in hand in short order.
Part of the pre-CT instructions were to fast at least 4 hours beforehand and not to have any liquids for 1 hour prior. So I found myself hungry and thirsty afterward, still tasting metal at the back of my throat. Heading north back to work I passed through Salt Lake City. I decided to head to a deli for a sandwich, but recalling the difficult parking, crowds, and standing in line required, I opted to swing by Frida Bistro to see if they were open for lunch. Good call - as they were open, not busy, and eager to provide outstanding gourmet fare at a reasonable price in a timely fashion. It was so good that I resolved to return this weekend with my wife for a celebratory dinner.
Thursday's exam was scheduled late in the afternoon - not my first choice, as it makes for half a day of getting ready. I quit work early yesterday, went to bed early and exhausted, and arose still feeling tired. Spent the morning doing routine chores, reading and answering emails, and practicing my deep breathing for relaxation. All went well and time flew by quickly. Uncharacteristically I went with a full breakfast, but by 1PM I was starting to feel nauseous and chose to skip lunch. More deep breathing overcame the nausea, and I gathered my paperwork and thoughts and climbed into the passenger seat for the drive down the mountain and into Salt Lake City. I read the comic page from several weeks worth of newspapers as we made the 50 minute drive in silence.
The doctor's office was jammed with a line to check in. There are four urologists and two physician's assistants in the practice, and it was my good providence that Dr. Hopkins was the only one not running behind schedule late in the afternoon. We were processed in and shown to an exam room within minutes. After the obligatory urine sample delivery and another 5 minute wait we were taken to the procedure room. Relieved to see the monitor sitting beside the scope, we looked forward to witnessing the procedure. After less than 10 minutes (a new record) Dr. Hopkins came in, shook hands, and reviewed my case: "Your X-rays look great. Some scarring on one kidney, probably from an earlier infection - no problem there. Diagnosed in 2008, clear for 2 years, six months between cystoscopies, 12 months between BCGs. So no BCG this time, but we will do it in September. PSA last checked last September?" I corrected him that it was January, 2010. " want those done annually, so go get it again," was his response.
Thirty seconds later he began the exam and an interminable 60 seconds more later he was complete. "All clear - no cancer." And with a promise that we could schedule both cysto and BCGs in September he was gone.It's hard to explain how one feels after these exams and news. I envision myself doing a fist pump, making an exclamation, offering a prayer of thanks. In reality it is an anticlimax. I told my wife it feels like just after exercise. Tired, not exhilarated, a load lifted. I just wanted to relax, alone, in a dark room for a while. But practical matters preclude that. For one, your junk HURTS a bit, and there is a mess to clean up, clothing to wear, saline solution to be discharged into the toilet, a prophylactic antibiotic pill to take, and future appointments to schedule. Then there is an hour drive home, during which I became ravenously hungry. This problem now had a simple solution in the form of a new, convenient location of the In-N-Out Burger chain.
The buns are not on the diet, but an order "protein style" gets you delicious burgers delivered in a lettuce wrap. No fries, sugary soft drinks, or shakes for us. It was a pleasant respite.Sun broke out before we got home, lightening the landscape and my mood. Reality had begun to sink in. 33 months cancer free! 6 months of freedom from medical intervention. It will be a good summer indeed! In the meantime we have the joy of enthusiasm mildly offset by the fiery pain of urination for a day or so...
I started sending out emails to various parties when I arrived home, and I learned that Brian S. in Atlanta had a rough time. Too much pain, swelling, and bleeding to do his cystoscopy. They will give him drugs to try to repair his bladder and try again in a month, while he is left to wonder if the cancer has come back or not. Next up we have HK in Toronto with a cysto on April 12, and David F. in England around the same timeframe. Prayers and support are always appreciated for all and by all. I received contacts from all over the world with prayers and good wishes for today. I thank you all for your support!
Family Ties and Other Updates - January 29, 2011
We have a couple new additions to our Bladder Cancer "fraternity." Just over a week ago my parents called to let me know that my first cousin had undergone a TURBT surgery for bladder cancer the previous day. 
We were all concerned to hear the unwelcome news, and relieved to hear, preliminarily, that all had gone well. Of course my blog and contact information were provided by his mother, and he let me know that he has been reading miscellaneous ramblings here from the beginning. A quick glance at my blog post list tells me that will probably take him a while. Rick emailed me that, "All is looking good at this point with a lucky stage of T-0 and a non-aggressive pathology report." Our family history (no cancer whatsoever) is quite similar, as you would expect, and he was also taken by surprise. I do suspect that our diet and exercise patterns were also similar. One key difference: my cousin does have a 25 year history of pack-a-day plus cigarette smoking, which has now been discontinued. We look forward to catching up with each other on both the good and the bad in the future.
Ken from Kentucky went through 2 TURBTs and began BCG in late December. So we can wish Kentucky Ken a happy and cancer-free new year in 2011. Ken writes: "I'm a bit confused and overwhelmed at this point." I felt exactly the same way, and so does my cousin Rick. It really takes some time to come to grips with the news. Cancer will change your life. It is up to you whether that change will be a positive one.
I also heard from Brian in Atlanta, having just completed his initial six BCGs. His level of discomfort during the first two hours of holding period, and the burning thereafter, was much worse than mine.
Perhaps he is more sensitive to the BCG, or more of his bladder tissue was affected by his TURBT. Brian writes: "I know what sleep deprivation feels like. After the 4th round, my wife timed me and I got up during the night every 7 minutes from 11:00PM until 5:00AM." He actually had to take two weeks between Round 5 and Round 6. He is up for his Judgment Day cystoscopy on March 2, the day before mine on March 3. And we can thank the "British Commonwealth Games" for providing Brian his "King of BCG" award graphic.
All of us appreciate your prayers and good thoughts as we go forward!
I am not a big believer in awareness campaigns or wearing ribbons. With the internet available to most, finding information has never been easier. And wearing ribbons can be supportive, I suppose. But the reality is that a kind word or a prayer would be more effective. I mention it because when I was harvesting the internet for some images to decorate today's blog post, I was amused to discover that the "awareness ribbon" for bladder cancer is the appropriate color. So take a look at the image below and don't be afraid to giggle out loud...
We were all concerned to hear the unwelcome news, and relieved to hear, preliminarily, that all had gone well. Of course my blog and contact information were provided by his mother, and he let me know that he has been reading miscellaneous ramblings here from the beginning. A quick glance at my blog post list tells me that will probably take him a while. Rick emailed me that, "All is looking good at this point with a lucky stage of T-0 and a non-aggressive pathology report." Our family history (no cancer whatsoever) is quite similar, as you would expect, and he was also taken by surprise. I do suspect that our diet and exercise patterns were also similar. One key difference: my cousin does have a 25 year history of pack-a-day plus cigarette smoking, which has now been discontinued. We look forward to catching up with each other on both the good and the bad in the future.Ken from Kentucky went through 2 TURBTs and began BCG in late December. So we can wish Kentucky Ken a happy and cancer-free new year in 2011. Ken writes: "I'm a bit confused and overwhelmed at this point." I felt exactly the same way, and so does my cousin Rick. It really takes some time to come to grips with the news. Cancer will change your life. It is up to you whether that change will be a positive one.
I also heard from Brian in Atlanta, having just completed his initial six BCGs. His level of discomfort during the first two hours of holding period, and the burning thereafter, was much worse than mine.
Perhaps he is more sensitive to the BCG, or more of his bladder tissue was affected by his TURBT. Brian writes: "I know what sleep deprivation feels like. After the 4th round, my wife timed me and I got up during the night every 7 minutes from 11:00PM until 5:00AM." He actually had to take two weeks between Round 5 and Round 6. He is up for his Judgment Day cystoscopy on March 2, the day before mine on March 3. And we can thank the "British Commonwealth Games" for providing Brian his "King of BCG" award graphic.All of us appreciate your prayers and good thoughts as we go forward!
I am not a big believer in awareness campaigns or wearing ribbons. With the internet available to most, finding information has never been easier. And wearing ribbons can be supportive, I suppose. But the reality is that a kind word or a prayer would be more effective. I mention it because when I was harvesting the internet for some images to decorate today's blog post, I was amused to discover that the "awareness ribbon" for bladder cancer is the appropriate color. So take a look at the image below and don't be afraid to giggle out loud...
Christmas Cheer & Reflection - December 27, 2010
Some of you may have noticed the post count has slowed down quite a bit. As I tell family and friends in my "Medical Update" emails - NO NEWS IS GOOD NEWS!! The purpose of this blog is to fill a gap in coverage on bladder cancer. 
There are dozens of good sites chocked full of dispassionate, clinical information on the types of bladder cancer and the recommended and optional treatments for each. In addition there are a couple of sites with emotional descriptions about bladder cancer's effects on people as well as their families and friends. When I was new to the game, I found both types of sites to be both alarming and disconcerting. I literally could not read much before becoming physically nauseous or faint. What was missing was an objective presentation of what a person will experience during diagnosis and BCG treatments. While my experience will not exactly mirror another's, perhaps my thoroughness will help people get mentally braced for the good and the ugly of what's coming. I think knowing that it is bad, but not too awful, unpleasant but more ridiculous, and most of all it's temporary - these observations will serve to keep your mind from conjuring up doomsday scenarios and allow you to focus on having the right attitude to heal and battle recurrences.
If you have read much at all, the doctors basically say to follow their allopathic regimens up to and including radical cystectomy, and that anything you do extra probably won't help or hurt. Yet many cancer websites for bladder and other cancer forms have a consistent theme - though it is often buried in emotional and/or speculative bullshit. DIET and EXERCISE. Just like the doctors, TV hosts, family, and friends have said all along, diet an exercise are the keys to better health. What they won't say is that better health is the key to controlling cancer - avoiding both occurrence and recurrence. Prior to being diagnosed, I was the poster child standing in opposition to this remedy. Hard to conceive of a worse diet - high in fats and carbs, nothing natural or organic, fruits and vegetables were fine when baked into pies. And for exercise? Fuggedaboudit! I had tried everything and hated it all. As for processed foods? Better living through chemistry for me!
But research has convinced me that, politics aside, there IS something to eating fresh and natural foods, in reversing the traditional American proportions of protein and fruit/veg from 75/25 to 25/75. And avoiding chemicals that are not necessary whenever possible is also prudent, given the absence of knowledge as to just what triggers these cancers. So I have become a believer for health reasons, and I have learned to ignore the politics. In fact, I have been ignoring politics and news of all sorts for two years and find myself living a fuller and happier life - not worrying about things I cannot control.
But not posting today to preach - only to summarize. I was diagnosed on March 31, 2008, with two tumors. Two TURBT procedures later I learned the tumors were T1 Grade 3 and non-invasive by the thinnest of margins. Since then I have undergone six initial BCG treatments and five 3-week maintenance sessions. Add to that multiple scopings and a couple of CT scans. And radical changes in outlook, diet, and exercise (even this very morning). Still battling with excess weight and like many, making a New Year's resolution to do better. All in all I am still alive, kicking, and relatively healthy.
Recurrence is still a high probability, and if it comes, I believe it will be minor and easily dealt with. So you CAN live with bladder cancer and not be too inconvenienced.
Another key thing to keep in mind is mental health and outlook. If you think cancer will kill you, then it will. If you think you will defeat it, perhaps you might. Positive outlook seems to trigger the body into using its natural defenses to stave off cancer. And to that end I will share my Christmas Day with you all. My #1 hobby in life is motorcycling. And even though I live in an area famous for winter snow, I manage to get out a bit in the cold. As long as the streets are clean and dry, it can be safe to ride. We had a lot of snow early this year, unusually so, even before Thanksgiving over 2 feet at the house. But it has not been bitterly cold, so the snow melts down a bit before the next storm. Before Christmas we had another couple of feet, followed by temperatures just above freezing. Christmas Day brought cool weather and sunny skies, so I went for a ride. Late afternoon temperatures hovered about 34F (1C) and up in the mountains dipped as low as 16F (-9C). With proper gear I was warm and comfy, listening to Christmas tunes on the satellite radio I as floated through deserted back-country roads. I paused by a lake, not yet frozen (you can see the ice line just to the right of the sign), and went to the end of the road for winter. The flat winter light made the bike look black and ominous - quite the opposite of my mood. So enjoy a few photos (click to enlarge each) and ride along with me on a 100+ horse, open, 2-wheeled sleigh!
There are dozens of good sites chocked full of dispassionate, clinical information on the types of bladder cancer and the recommended and optional treatments for each. In addition there are a couple of sites with emotional descriptions about bladder cancer's effects on people as well as their families and friends. When I was new to the game, I found both types of sites to be both alarming and disconcerting. I literally could not read much before becoming physically nauseous or faint. What was missing was an objective presentation of what a person will experience during diagnosis and BCG treatments. While my experience will not exactly mirror another's, perhaps my thoroughness will help people get mentally braced for the good and the ugly of what's coming. I think knowing that it is bad, but not too awful, unpleasant but more ridiculous, and most of all it's temporary - these observations will serve to keep your mind from conjuring up doomsday scenarios and allow you to focus on having the right attitude to heal and battle recurrences.
If you have read much at all, the doctors basically say to follow their allopathic regimens up to and including radical cystectomy, and that anything you do extra probably won't help or hurt. Yet many cancer websites for bladder and other cancer forms have a consistent theme - though it is often buried in emotional and/or speculative bullshit. DIET and EXERCISE. Just like the doctors, TV hosts, family, and friends have said all along, diet an exercise are the keys to better health. What they won't say is that better health is the key to controlling cancer - avoiding both occurrence and recurrence. Prior to being diagnosed, I was the poster child standing in opposition to this remedy. Hard to conceive of a worse diet - high in fats and carbs, nothing natural or organic, fruits and vegetables were fine when baked into pies. And for exercise? Fuggedaboudit! I had tried everything and hated it all. As for processed foods? Better living through chemistry for me!
But research has convinced me that, politics aside, there IS something to eating fresh and natural foods, in reversing the traditional American proportions of protein and fruit/veg from 75/25 to 25/75. And avoiding chemicals that are not necessary whenever possible is also prudent, given the absence of knowledge as to just what triggers these cancers. So I have become a believer for health reasons, and I have learned to ignore the politics. In fact, I have been ignoring politics and news of all sorts for two years and find myself living a fuller and happier life - not worrying about things I cannot control.
But not posting today to preach - only to summarize. I was diagnosed on March 31, 2008, with two tumors. Two TURBT procedures later I learned the tumors were T1 Grade 3 and non-invasive by the thinnest of margins. Since then I have undergone six initial BCG treatments and five 3-week maintenance sessions. Add to that multiple scopings and a couple of CT scans. And radical changes in outlook, diet, and exercise (even this very morning). Still battling with excess weight and like many, making a New Year's resolution to do better. All in all I am still alive, kicking, and relatively healthy.
Recurrence is still a high probability, and if it comes, I believe it will be minor and easily dealt with. So you CAN live with bladder cancer and not be too inconvenienced.Another key thing to keep in mind is mental health and outlook. If you think cancer will kill you, then it will. If you think you will defeat it, perhaps you might. Positive outlook seems to trigger the body into using its natural defenses to stave off cancer. And to that end I will share my Christmas Day with you all. My #1 hobby in life is motorcycling. And even though I live in an area famous for winter snow, I manage to get out a bit in the cold. As long as the streets are clean and dry, it can be safe to ride. We had a lot of snow early this year, unusually so, even before Thanksgiving over 2 feet at the house. But it has not been bitterly cold, so the snow melts down a bit before the next storm. Before Christmas we had another couple of feet, followed by temperatures just above freezing. Christmas Day brought cool weather and sunny skies, so I went for a ride. Late afternoon temperatures hovered about 34F (1C) and up in the mountains dipped as low as 16F (-9C). With proper gear I was warm and comfy, listening to Christmas tunes on the satellite radio I as floated through deserted back-country roads. I paused by a lake, not yet frozen (you can see the ice line just to the right of the sign), and went to the end of the road for winter. The flat winter light made the bike look black and ominous - quite the opposite of my mood. So enjoy a few photos (click to enlarge each) and ride along with me on a 100+ horse, open, 2-wheeled sleigh!
A Question About Curcumin (found in curry) - November 18, 2010
I got a question from Mike in South Carolina regarding curcumin consumption: "I have started taking Curcumin 95% total curcuminolds (rhizome-curcuma longa) (18:1) derived from turmeric . I was wondering if you know anything about whether it is beneficial in the
fight against bladder cancer?"
Taken from "Foods to Fight Cancer" by Belivau and Gingras, curcumin as consumed in foods with curry (primarily in India) has been postulated (but not proved in peer-reviewed study) to be a factor in the dramatic difference in the rates of many types of cancer between India and North America/Europe. For men the rate of bladder cancer in India is 1/8 the rate in the USA.
The anti-promotional benefits (meaning it does not prevent cancer triggers, but impedes cancer formation) of curcumin are pretty well studied. It has a well demonstrated anti-inflammatory effect, which is vital for those with cancer tendencies. The link between consumption in pill or food has not been studied as well. In the US we are pre-disposed to isolate and deliver in pill form, such as you are taking. In general, it is not certain whether isolating the pure compound (curcumin in your case) is truly beneficial versus consuming it as food along with potentially beneficial corrolary compounds. In fact, as in the case of soy extracts, it may well be too much of a good thing and potentially harmful.
In the case of curcumin, it may not be so much harmful as a waste of time. Pure curcumin is not readily bio-available (your digestive system does not pass it readily into the bloodstream). But curcumin in curry form adds the synergistic compound piperine, which increases curcumin bioavailability by a factor of 10. Piperine is found in most forms of pepper - always an ingredient in curry mixes.
In summary, for bladder cancer: Curcumin good, taken regularly as a food along with piperine (most commonly in curry) very good, taken as an isolated chemical in a pill - not so much, albeit very convenient.
fight against bladder cancer?"Taken from "Foods to Fight Cancer" by Belivau and Gingras, curcumin as consumed in foods with curry (primarily in India) has been postulated (but not proved in peer-reviewed study) to be a factor in the dramatic difference in the rates of many types of cancer between India and North America/Europe. For men the rate of bladder cancer in India is 1/8 the rate in the USA.
The anti-promotional benefits (meaning it does not prevent cancer triggers, but impedes cancer formation) of curcumin are pretty well studied. It has a well demonstrated anti-inflammatory effect, which is vital for those with cancer tendencies. The link between consumption in pill or food has not been studied as well. In the US we are pre-disposed to isolate and deliver in pill form, such as you are taking. In general, it is not certain whether isolating the pure compound (curcumin in your case) is truly beneficial versus consuming it as food along with potentially beneficial corrolary compounds. In fact, as in the case of soy extracts, it may well be too much of a good thing and potentially harmful.
In the case of curcumin, it may not be so much harmful as a waste of time. Pure curcumin is not readily bio-available (your digestive system does not pass it readily into the bloodstream). But curcumin in curry form adds the synergistic compound piperine, which increases curcumin bioavailability by a factor of 10. Piperine is found in most forms of pepper - always an ingredient in curry mixes.
In summary, for bladder cancer: Curcumin good, taken regularly as a food along with piperine (most commonly in curry) very good, taken as an isolated chemical in a pill - not so much, albeit very convenient.
Worldwide Updates - November 12, 2010
It's been a bit over a month since my last post and over six months since I last updated all of you on the progress of our little bladder cancer "fraternity."
The news is mostly good. In my case, no activity until March, and then only CT scan and flexible cystoscopy. If all clear, nothing for six more months - meaning NO BCG. That means my news is all good news indeed.
David F. in England is busy starting up a new business, having mostly freed himself from wage slavery in a bureaucratic but well-intentioned charity job. He is having crazy days and dramatic mood swings - both quite normal for a start-up business. Medically speaking, his biggest battle of note was coming to grips with having dental work done (including a root canal), sending us all an important message about not putting such things off. His bladder cancer news is entirely good, as in August he was told that, after four years, dozens of BCGs, and nine surgeries, that he was officially
ALL CLEAR and would be going to flexible cystoscopies (and no BCG) annually. Huzzahs all around are in order for David!
HK in Toronto, as some may recall, was having a truly awful time. He had constant pain, well after the timeframe that any of the rest of us had, and particularly bad side effects from BCG - to the point that he could not continue them. Last month he was ALL CLEAR on his flexible cystoscopy, and while his doctors considered doing some BCG, they decided the agony was not justified by the potential benefit. They will wait six months and do another cystoscopy, and they advised him to "take it easy and try not to have stress." Good advice for all of us!
We have a new member, Patrick from SoCal (Southern California), who reports, "I am a 44 year old married African American with 3 beautiful kids and 1 year ago this month I was diagnosed with carcinoma in situ (I never smoked either). I have had the 6 week initial treatment along with 1st 3 week BCG, I am currently going through my 2nd series of 3 week treatments. I have taken the trip to Arizona to see Dr. Lamm and he along with my doctor confirmed I am cancer FREE. I pray and hope the BCG continues to do the job." CIS is nasty business when inside the bladder, but it often responds well to BCG treatments. More on this in Brian's report below.
Brian S. in Atlanta is receiving excellent care with the best tools available. He suggests any in the area should contact him (via this blog) for a referral to his clinic, which he describes in glowing terms: "My clinic has this new scope and it's got an LED light (very bright), a still camera, and of course full motion video. The scope cost $17K! Having the pictures really helps when I go back in a few months later and we ask, "was that there before?" My wife was in the room too and both of us could see inside my bladder as he was doing the procedure. He took pictures of the suspicious area. He even turned the camera back to see it entering my bladder. He described that as, "looking at ourselves". It was surreal, but very cool. This clinic is the best in the area. And to top it off, it's non-profit and backed by the co-founder of Home Depot. Needless to say, they aren't pushing you through to get to the next guy's co-payment!"
Brian's news is not as good as we hoped. His urine cytology came back "suspicious," and the scope revealed what looked to be a white patch of peeling skin. His Emory-trained doctor, who has been in practice for a long time, had never seen anything like it. I suspected it might be CIS (Carcinoma in Situ) that had been damaged (perhaps killed) by BCG. They biopsied him via TUR surgery followed by a mytomycin chemo bake of the bladder. It was the size of a silver dollar, and the biopsy did confirm CIS, which is good news for other cancers and not so much for bladder cancer. CIS is relatively rare, comprising approximately 10% of cases, and is considered to be a superficial tumor (does not penetrate the bladder lining). It is a high-grade and aggressive manifestation of bladder cancer that has highly variable outcomes. David F. above had CIS in addition to other tumors, and clearly he has responded well to BCG. And so Brian will have SIX more BCGs to be followed by scopes.
Roy from Alabama had a minor scare with 2 "spots" detected during the cysto on his very first judgment day, having completed his six initial BCGs. We are all thankful that the biopsies showed them benign.
Mike from South Carolina reports that he
had three tumors removed in June and six BCGs. Now he will have flexible cystoscopies every six months for two years. If all goes well, annually thereafter. He is not going to have maintenance BCGs at this time.
Robert S. in New York is now 22 months ALL CLEAR and goes to annual flexible scopings. No BCG maintenance for him either.
I have not heard from Ed B. in Washington, Asya in California, or Jeff in the UK since last April. Let's hope that no news is good news for them all. Perhaps they will give us updates in comments below...
The news is mostly good. In my case, no activity until March, and then only CT scan and flexible cystoscopy. If all clear, nothing for six more months - meaning NO BCG. That means my news is all good news indeed.David F. in England is busy starting up a new business, having mostly freed himself from wage slavery in a bureaucratic but well-intentioned charity job. He is having crazy days and dramatic mood swings - both quite normal for a start-up business. Medically speaking, his biggest battle of note was coming to grips with having dental work done (including a root canal), sending us all an important message about not putting such things off. His bladder cancer news is entirely good, as in August he was told that, after four years, dozens of BCGs, and nine surgeries, that he was officially
ALL CLEAR and would be going to flexible cystoscopies (and no BCG) annually. Huzzahs all around are in order for David!HK in Toronto, as some may recall, was having a truly awful time. He had constant pain, well after the timeframe that any of the rest of us had, and particularly bad side effects from BCG - to the point that he could not continue them. Last month he was ALL CLEAR on his flexible cystoscopy, and while his doctors considered doing some BCG, they decided the agony was not justified by the potential benefit. They will wait six months and do another cystoscopy, and they advised him to "take it easy and try not to have stress." Good advice for all of us!
We have a new member, Patrick from SoCal (Southern California), who reports, "I am a 44 year old married African American with 3 beautiful kids and 1 year ago this month I was diagnosed with carcinoma in situ (I never smoked either). I have had the 6 week initial treatment along with 1st 3 week BCG, I am currently going through my 2nd series of 3 week treatments. I have taken the trip to Arizona to see Dr. Lamm and he along with my doctor confirmed I am cancer FREE. I pray and hope the BCG continues to do the job." CIS is nasty business when inside the bladder, but it often responds well to BCG treatments. More on this in Brian's report below.
Brian S. in Atlanta is receiving excellent care with the best tools available. He suggests any in the area should contact him (via this blog) for a referral to his clinic, which he describes in glowing terms: "My clinic has this new scope and it's got an LED light (very bright), a still camera, and of course full motion video. The scope cost $17K! Having the pictures really helps when I go back in a few months later and we ask, "was that there before?" My wife was in the room too and both of us could see inside my bladder as he was doing the procedure. He took pictures of the suspicious area. He even turned the camera back to see it entering my bladder. He described that as, "looking at ourselves". It was surreal, but very cool. This clinic is the best in the area. And to top it off, it's non-profit and backed by the co-founder of Home Depot. Needless to say, they aren't pushing you through to get to the next guy's co-payment!"
Brian's news is not as good as we hoped. His urine cytology came back "suspicious," and the scope revealed what looked to be a white patch of peeling skin. His Emory-trained doctor, who has been in practice for a long time, had never seen anything like it. I suspected it might be CIS (Carcinoma in Situ) that had been damaged (perhaps killed) by BCG. They biopsied him via TUR surgery followed by a mytomycin chemo bake of the bladder. It was the size of a silver dollar, and the biopsy did confirm CIS, which is good news for other cancers and not so much for bladder cancer. CIS is relatively rare, comprising approximately 10% of cases, and is considered to be a superficial tumor (does not penetrate the bladder lining). It is a high-grade and aggressive manifestation of bladder cancer that has highly variable outcomes. David F. above had CIS in addition to other tumors, and clearly he has responded well to BCG. And so Brian will have SIX more BCGs to be followed by scopes.
Roy from Alabama had a minor scare with 2 "spots" detected during the cysto on his very first judgment day, having completed his six initial BCGs. We are all thankful that the biopsies showed them benign.
Mike from South Carolina reports that he
had three tumors removed in June and six BCGs. Now he will have flexible cystoscopies every six months for two years. If all goes well, annually thereafter. He is not going to have maintenance BCGs at this time.Robert S. in New York is now 22 months ALL CLEAR and goes to annual flexible scopings. No BCG maintenance for him either.
I have not heard from Ed B. in Washington, Asya in California, or Jeff in the UK since last April. Let's hope that no news is good news for them all. Perhaps they will give us updates in comments below...
Judgment Day #7 - Report, Aftermath, & Musings - September 11, 2010
Two days later and I have pretty much recovered physically. Mentally? Jury is still out. Each successive Judgment Day does get easier to prepare for and to go through.
Still the stress level is quite high, and there is a definite CRASH afterward. A couple of years ago I responded to the good news with joy and then a nasty head cold for a week. Despite the outward appearance, the body will indeed bottle up the stress, and the release can be ugly. For the past two or three I would simply not think about it until about a week before, and then I would be a mix of ugly mood swings and semi-suppressed anxiety. Taking a nice long vacation in advance of the date has become our practice for two reasons: 1) Trying to do more carpe diem activities, and 2) You just never know if the opportunity will be gone soon. Macabre? Maybe, but reason #2 does help drive towards reason #1, so it's all good. We prefaced this Judgment Day with an 8 day, 2000 mile motorcycle trip throughout some of the most beautiful parts of Idaho. Chasing rivers up and down mountains through forests will do wonders for your outlook, as will a nice slice of huckleberry pie! My favorite, these berries are hand picked and grown only in the wild, so they are naturally organic and full of cancer-fighting antioxidants. We arrived home late Saturday evening, tired but refreshed from our cobweb-clearing blast through fresh air and mountain vistas. No work on Sunday or Monday (Labor Day holiday in US), just time to relax at home. I found myself curiously not worked up about the upcoming cystoscopy, even though I was thinking about it from time to time.
Tuesday brought a ferociously busy work day and evening, slowing down a bit on Wednesday, which was when I found myself falling into "freakout mode." Stayed as busy as I could, and came home early to take a nap and try to relax. Refreshed myself on the deep-breathing technique and practiced a couple of times on Wednesday night. It really does help a lot. Slept pretty well and was up early for a long, hot shower and more deep breathing. The day was dark, gloomy, cool and overcast - giving a film noir effect. My procedure is almost always late in the mornings, but we were able to be first on the docket at 9AM. The trip down was traffic-free, safely after the morning rush hour into Salt Lake City. Arrived early and signed the consent form, then we were shown to the exam room a few minutes after 9. Urine sample given, the nurse asked me to disrobe (keeping only shirt and socks) and get on the table. Having noted that Dr. Hopkins had taken one patient before me, I asked if I could wait until we were truly "next." She was having none of that, so I smiled, replied, "Yes Ma'am!" and hopped to it. As I expected the wait was about 20 minutes before the doctor came in. I really should buy a piece of interesting art for them to mount on the ceiling over the exam table.
Dr. Hopkins was all smiles and business, noting that he had not seen me in quite a while - this being the first six-month space between cystoscopic exams. After verifying that we already had BCGs scheduled, he saw that I was relaxed and ready, so we proceeded. Happily the scope was hooked to the monitor for me to watch, and this focus really does improve my ability to relax and ignore the procedure. Sixty seconds later we could see that all was clear, and we were left alone. First order of business after getting dressed was to return the saline solution that had been instilled for the procedure, which left my bladder uncomfortably full.
First fire-pee episode out of the way, I went to the front desk for my prophylactic antibiotic pill, after which we left the office and walked into the bright sunlight of a stunning day. Even the weather was changed to match the outcome!
Here is where things were different. In the past I had steadfastly refused to plan ANYTHING after a Judgment Day, due to my inability to make a firm commitment with uncertain outcomes. The last two times I planned (and pre-paid) for dinners out with the wine club, and even scheduled some meetings for work. But always with a bucket of disclaimers and cautions. But due to providence (or cosmic convergence if you like), I not only had plans out for the next couple of weeks, I had a meeting to run at work this very same day at noon! My wife dropped me at the building at 10:30 with instructions to retrieve me at 2PM. So rather than retiring to a solitary room to hydrate and recover (takes about a day and a half for cystosocopy), I was into full work mode nearly immediately. I did take a few minutes to dash off some email updates on the ALL CLEAR to those who had requested such, made calls to my parents and brother (who by then had already read the email), and got right to work. The meeting went fairly well, and I was also privileged to share the joy of my good results with various co-workers who stopped by to give cheers and high fives. My take on all of it? I told them, "From the neck up, I feel like dancing!"
I packed the laptop and moved to the home office to complete the work day, with plans to work from home on Friday. In the past I had always taken the day off to recover, and sometimes even
the day after. But this time the plan for both cystoscopy and BCGs is very different. The reason is that in January my employer changed their policies and eliminated my bank of emergency sick days. They also converted normal sick days into "personal time" combined with vacations, rewarding their healthy workers and penalizing those with chronic conditions. We now are clearly considered to be a burden both to the corporation and society at large, so sacrifices must be made. And now my exams and BCGs are "personal time off" which is really vacation time, making for some of the worst vacations ever. For those who have not noticed, the economy in the US and Europe is awful, and despite the continued reassurances of the media, there is no evidence in real life to support the contention that recovery is here or coming soon. Therefore companies are reducing liabilities and expenses, knowing that options are slim for employees. I suspect they may feel some pain if the economy ever improves, but for now we shall play the game by their rules. What this means is that I had to do some small tasks and monitor email for the rest of the day and Friday.
Even though there is not much real physical trauma from which to recover, I am always amazed at the mental toll. The fiercest concentration was required to complete simple tasks, and the effort to hold coherent conversations was shocking. I believe I was able to muster enough energy to get things done, and slept well both nights. Today I feel much better, pretty much back to normal. Even though I have been through this and worse before, I am still amazed how difficult it is to recover mentally. Having to do productive work immediately afterward was taxing beyond my greatest expectations. I have also moved the BCGs from Thursday mornings to Fridays. My reason for selecting Thursday was that the doctors would be available on Friday should there be any trouble. But as a BCG veteran, there is no point in wasting a vacation day now. So Fridays will be BCG days and Saturdays will be flu-like symptom recovery day. The big drawback here is that Dr. Hopkins only works in the office on alternate Fridays. So we selected a schedule to go Friday, Thursday, Friday. But he is taking that middle week off, so I elected to go with PA Liz again and do the middle one on Friday. Hopefully it will not be as comical as the last time she substituted, the details of which were not really disclosed. Waiting for the book deal, I guess.
The bottom line is this. Two days after a clean report and now officially 27 months cancer free, I now really believe that I have crossed the two year bridge. While the bladder cancer is still very likely to recur once or more in the next eight years, it is highly unlikely to be very severe. Life is really looking up, and as always, GOD IS GOOD - ALL THE TIME.
Below are a few photos from the motorcycle ride through Idaho and our attendance at the WeSTOC XV rally. Click to enlarge any of them, and see if you can spot the deer in the first one!
Still the stress level is quite high, and there is a definite CRASH afterward. A couple of years ago I responded to the good news with joy and then a nasty head cold for a week. Despite the outward appearance, the body will indeed bottle up the stress, and the release can be ugly. For the past two or three I would simply not think about it until about a week before, and then I would be a mix of ugly mood swings and semi-suppressed anxiety. Taking a nice long vacation in advance of the date has become our practice for two reasons: 1) Trying to do more carpe diem activities, and 2) You just never know if the opportunity will be gone soon. Macabre? Maybe, but reason #2 does help drive towards reason #1, so it's all good. We prefaced this Judgment Day with an 8 day, 2000 mile motorcycle trip throughout some of the most beautiful parts of Idaho. Chasing rivers up and down mountains through forests will do wonders for your outlook, as will a nice slice of huckleberry pie! My favorite, these berries are hand picked and grown only in the wild, so they are naturally organic and full of cancer-fighting antioxidants. We arrived home late Saturday evening, tired but refreshed from our cobweb-clearing blast through fresh air and mountain vistas. No work on Sunday or Monday (Labor Day holiday in US), just time to relax at home. I found myself curiously not worked up about the upcoming cystoscopy, even though I was thinking about it from time to time.Tuesday brought a ferociously busy work day and evening, slowing down a bit on Wednesday, which was when I found myself falling into "freakout mode." Stayed as busy as I could, and came home early to take a nap and try to relax. Refreshed myself on the deep-breathing technique and practiced a couple of times on Wednesday night. It really does help a lot. Slept pretty well and was up early for a long, hot shower and more deep breathing. The day was dark, gloomy, cool and overcast - giving a film noir effect. My procedure is almost always late in the mornings, but we were able to be first on the docket at 9AM. The trip down was traffic-free, safely after the morning rush hour into Salt Lake City. Arrived early and signed the consent form, then we were shown to the exam room a few minutes after 9. Urine sample given, the nurse asked me to disrobe (keeping only shirt and socks) and get on the table. Having noted that Dr. Hopkins had taken one patient before me, I asked if I could wait until we were truly "next." She was having none of that, so I smiled, replied, "Yes Ma'am!" and hopped to it. As I expected the wait was about 20 minutes before the doctor came in. I really should buy a piece of interesting art for them to mount on the ceiling over the exam table.
Dr. Hopkins was all smiles and business, noting that he had not seen me in quite a while - this being the first six-month space between cystoscopic exams. After verifying that we already had BCGs scheduled, he saw that I was relaxed and ready, so we proceeded. Happily the scope was hooked to the monitor for me to watch, and this focus really does improve my ability to relax and ignore the procedure. Sixty seconds later we could see that all was clear, and we were left alone. First order of business after getting dressed was to return the saline solution that had been instilled for the procedure, which left my bladder uncomfortably full.
First fire-pee episode out of the way, I went to the front desk for my prophylactic antibiotic pill, after which we left the office and walked into the bright sunlight of a stunning day. Even the weather was changed to match the outcome!Here is where things were different. In the past I had steadfastly refused to plan ANYTHING after a Judgment Day, due to my inability to make a firm commitment with uncertain outcomes. The last two times I planned (and pre-paid) for dinners out with the wine club, and even scheduled some meetings for work. But always with a bucket of disclaimers and cautions. But due to providence (or cosmic convergence if you like), I not only had plans out for the next couple of weeks, I had a meeting to run at work this very same day at noon! My wife dropped me at the building at 10:30 with instructions to retrieve me at 2PM. So rather than retiring to a solitary room to hydrate and recover (takes about a day and a half for cystosocopy), I was into full work mode nearly immediately. I did take a few minutes to dash off some email updates on the ALL CLEAR to those who had requested such, made calls to my parents and brother (who by then had already read the email), and got right to work. The meeting went fairly well, and I was also privileged to share the joy of my good results with various co-workers who stopped by to give cheers and high fives. My take on all of it? I told them, "From the neck up, I feel like dancing!"
I packed the laptop and moved to the home office to complete the work day, with plans to work from home on Friday. In the past I had always taken the day off to recover, and sometimes even
the day after. But this time the plan for both cystoscopy and BCGs is very different. The reason is that in January my employer changed their policies and eliminated my bank of emergency sick days. They also converted normal sick days into "personal time" combined with vacations, rewarding their healthy workers and penalizing those with chronic conditions. We now are clearly considered to be a burden both to the corporation and society at large, so sacrifices must be made. And now my exams and BCGs are "personal time off" which is really vacation time, making for some of the worst vacations ever. For those who have not noticed, the economy in the US and Europe is awful, and despite the continued reassurances of the media, there is no evidence in real life to support the contention that recovery is here or coming soon. Therefore companies are reducing liabilities and expenses, knowing that options are slim for employees. I suspect they may feel some pain if the economy ever improves, but for now we shall play the game by their rules. What this means is that I had to do some small tasks and monitor email for the rest of the day and Friday.Even though there is not much real physical trauma from which to recover, I am always amazed at the mental toll. The fiercest concentration was required to complete simple tasks, and the effort to hold coherent conversations was shocking. I believe I was able to muster enough energy to get things done, and slept well both nights. Today I feel much better, pretty much back to normal. Even though I have been through this and worse before, I am still amazed how difficult it is to recover mentally. Having to do productive work immediately afterward was taxing beyond my greatest expectations. I have also moved the BCGs from Thursday mornings to Fridays. My reason for selecting Thursday was that the doctors would be available on Friday should there be any trouble. But as a BCG veteran, there is no point in wasting a vacation day now. So Fridays will be BCG days and Saturdays will be flu-like symptom recovery day. The big drawback here is that Dr. Hopkins only works in the office on alternate Fridays. So we selected a schedule to go Friday, Thursday, Friday. But he is taking that middle week off, so I elected to go with PA Liz again and do the middle one on Friday. Hopefully it will not be as comical as the last time she substituted, the details of which were not really disclosed. Waiting for the book deal, I guess.
The bottom line is this. Two days after a clean report and now officially 27 months cancer free, I now really believe that I have crossed the two year bridge. While the bladder cancer is still very likely to recur once or more in the next eight years, it is highly unlikely to be very severe. Life is really looking up, and as always, GOD IS GOOD - ALL THE TIME.
Below are a few photos from the motorcycle ride through Idaho and our attendance at the WeSTOC XV rally. Click to enlarge any of them, and see if you can spot the deer in the first one!
Judgment Day #7 - Cancer FREE 27 Months (and counting) - September 9, 2010
In my mind this was a bigger milestone. Unfortunately my mind is a little bit mushy, post-climactic stress syndrome or something. Details on the Judgment Day, the cystoscopy, the significance, the outfall, the prognosis, and the next steps are forthcoming.
Stay tuned to this space!
Bladder Cancer Awareness Day - July 17, 2010
I apologize first of all for the belated post, having missed July 17 by about 3 weeks, and second of all for stealing most of the content from my fellow-survivor David Ferdinando, who lives near London in the U.K. 
Even though we are both aware of bladder cancer EVERY day, David is more aware of what is going on in the USA on an advocacy level than I have been. So I will catch up a bit here, and will also refer you to his excellent blog, My Bladder Cancer Journey. David's blog is much more journal-style, almost a stream of consciousness. It gives an outstanding picture of the emotional swings that come with battling cancer. Since mine is much more article based, organized as reflective of my nature, the combination of the two makes for an excellent image of how bladder cancer warriors live. And live we do, and we intend to continue. As I have stated often, attitude is a key element found in survivors of cancer of any type. Feeling depressed about your cancer? Kick yourself in the ass, get angry, whatever it takes to get back on top. If you are fighting cancer mentally every day, the body will respond to make its environment less friendly for the disease.
For those of you who are not aware, Bladder Cancer is the 5th most frequently-occurring cancer in the world. For men it is the 4th most "popular." If that is the case, why have most people never heard of it? Why don't you know more people that have it? In my case I was the first person I knew that ever had it. I think the answer is summarized well by CBS News correspondent Bob Schieffer in the video below. This spot aired at the end of the CBS Evening News with Katie Couric last night (August 5, 2010).
https://youtu.be/Sqdolk6wR0M
For those who don't care to watch the video (very well done, high resolution, and less than 3 minutes long) Bob says, "People don't like to talk about diseases that happen to you below the belt. It's embarrassing to talk about." And that is certainly true. I have also discovered that many cancer survivors prefer to keep their status a secret for personal reasons, and often to prevent limiting their careers. I decided early on that keeping secrets was not consistent with my nature, and that asking around and seeking information required some disclosure anyway. Between my brother's urging and the absence of internet details on what it really feels like to have bladder cancer or undergo BCG treatments,
I decided to go even more public with this blog. And after discussing my private parts on an open forum for over two years now, it becomes much easier - perhaps to the embarrassment of my family and friends!
As for information on the internet, there is the well-known problem of both too much and not enough. Too much in general and not enough specifically addressing your question. I have tried to use post labels and key words in post titles to make it easier for search engines to find my posts that address specific issues, and it seems to be working. I see that many have found posts that directly address their search queries using Google, Bing, Yahoo, and other search engines. Most visitors come from the USA, Canada, England, and Australia with a few from New Zealand, Portugal, Israel, and India. For the most part you all find what you are looking for, or at least my opinion about it, and are done after a couple of minutes and a few page views. I rarely get comments or emails, so I presume it must be working. I never get complaints, anyhow. If you do have a complaint, I guarantee to give you your money back, LOL. (Laughing out loud because my advice is free of charge)
As for web resources other than my own, I do have a post on Bladder Cancer Sites and Blogs. One of those, which is also listed in my sidebar to the left, is the Bladder Cancer Advocacy Network. When I originally researched them about 2 years ago, they were focused primarily on raising awareness to get a better shot at government and other funding for research. While it is still their main purpose, they have expanded their reach a bit and have regular newsletters and many helpful links on the latest research, clinical trials, news events, and other social aspects to connect bladder cancer warriors. And this year they sponsored a national Bladder Cancer Awareness Day.
The organization level of the site and the organization have improved dramatically, and I now subscribe to their email updates and newsletters. So perhaps next year I won't miss the formal awareness day. Word is getting out that we do not have to be passive about this disease, and we can do things that may help the medical treatments be more successful in keeping cancer at bay. So happy watching, happy researching, and positive attitudes to you all!
Even though we are both aware of bladder cancer EVERY day, David is more aware of what is going on in the USA on an advocacy level than I have been. So I will catch up a bit here, and will also refer you to his excellent blog, My Bladder Cancer Journey. David's blog is much more journal-style, almost a stream of consciousness. It gives an outstanding picture of the emotional swings that come with battling cancer. Since mine is much more article based, organized as reflective of my nature, the combination of the two makes for an excellent image of how bladder cancer warriors live. And live we do, and we intend to continue. As I have stated often, attitude is a key element found in survivors of cancer of any type. Feeling depressed about your cancer? Kick yourself in the ass, get angry, whatever it takes to get back on top. If you are fighting cancer mentally every day, the body will respond to make its environment less friendly for the disease.For those of you who are not aware, Bladder Cancer is the 5th most frequently-occurring cancer in the world. For men it is the 4th most "popular." If that is the case, why have most people never heard of it? Why don't you know more people that have it? In my case I was the first person I knew that ever had it. I think the answer is summarized well by CBS News correspondent Bob Schieffer in the video below. This spot aired at the end of the CBS Evening News with Katie Couric last night (August 5, 2010).
https://youtu.be/Sqdolk6wR0M
For those who don't care to watch the video (very well done, high resolution, and less than 3 minutes long) Bob says, "People don't like to talk about diseases that happen to you below the belt. It's embarrassing to talk about." And that is certainly true. I have also discovered that many cancer survivors prefer to keep their status a secret for personal reasons, and often to prevent limiting their careers. I decided early on that keeping secrets was not consistent with my nature, and that asking around and seeking information required some disclosure anyway. Between my brother's urging and the absence of internet details on what it really feels like to have bladder cancer or undergo BCG treatments,
I decided to go even more public with this blog. And after discussing my private parts on an open forum for over two years now, it becomes much easier - perhaps to the embarrassment of my family and friends!As for information on the internet, there is the well-known problem of both too much and not enough. Too much in general and not enough specifically addressing your question. I have tried to use post labels and key words in post titles to make it easier for search engines to find my posts that address specific issues, and it seems to be working. I see that many have found posts that directly address their search queries using Google, Bing, Yahoo, and other search engines. Most visitors come from the USA, Canada, England, and Australia with a few from New Zealand, Portugal, Israel, and India. For the most part you all find what you are looking for, or at least my opinion about it, and are done after a couple of minutes and a few page views. I rarely get comments or emails, so I presume it must be working. I never get complaints, anyhow. If you do have a complaint, I guarantee to give you your money back, LOL. (Laughing out loud because my advice is free of charge)
As for web resources other than my own, I do have a post on Bladder Cancer Sites and Blogs. One of those, which is also listed in my sidebar to the left, is the Bladder Cancer Advocacy Network. When I originally researched them about 2 years ago, they were focused primarily on raising awareness to get a better shot at government and other funding for research. While it is still their main purpose, they have expanded their reach a bit and have regular newsletters and many helpful links on the latest research, clinical trials, news events, and other social aspects to connect bladder cancer warriors. And this year they sponsored a national Bladder Cancer Awareness Day.
The organization level of the site and the organization have improved dramatically, and I now subscribe to their email updates and newsletters. So perhaps next year I won't miss the formal awareness day. Word is getting out that we do not have to be passive about this disease, and we can do things that may help the medical treatments be more successful in keeping cancer at bay. So happy watching, happy researching, and positive attitudes to you all!
Life and Mental Health - May 30, 2010
If you visit this blog a few times, you can see that the day to day updates appear at the top of the column to the left, while research, medical details, and "deep thoughts" are presented as blog posts. 
The latter were quite frequent early on when medical interference was also commonplace. Having "graduated" now to the post-two-year cancer free status, my urologist decided to back off a bit. Clear cystoscopy and 3 BCG treatments in March, then no more visits to him until September 9. April-August created a five month window, the longest time I have gone between medical things since all this started over two years ago.
For the past two years solid my primary focus has been doing research, doing medical treatments, changing diet, lifestyle, and supplement regimens, and even some hated exercise. I even devised a logic chart for a multi-modal attack on any type of cancer. Many good things have happened in addition to the cancer-free status - I have lost weight, my complexion has cleared up completely, my hair is growing back (filling in a male pattern bald spot, NOT from having been killed by chemo or radiation), I feel great, and I even look better. My own father did not recognize me when I accosted him in a crowded room a couple of weeks ago. Having five months now free from all this focus is entirely new territory. Now that I feel and look better and have nothing binding me to focus fully on health and medicine, I must admit that I was fully unprepared to deal with it. I suppose an analogy might be to put a lot of effort into climbing a mountain - so much effort and focus that, upon reaching the top, the climber is at a loss for what to do next. Take photos? Jump for joy? Have lunch? Open champagne? And so, nonplussed, our climber just stands there.
And that brings us to today's topic. I had steadfastly refused to plan beyond the next cystoscopy for over one year, and only cautiously planned things a couple of weeks beyond for the past year. Four times we planned big vacations just before the next cystoscopy Judgment Days (two to Mexico and two 10-day motorcycle trips), just to get what might potentially be one last big trip before any bad news. Having "stood motionless on top of the mountain" for nearly a month, it is now time to focus on mental health in addition to physical health.
To be sure the two are linked, and I have been maintaining a positive attitude. But this new approach goes beyond - it takes me to a place to begin to visualize NOT dealing with cancer, but to LIVING with cancer. Realizing and internalizing that BLADDER CANCER IS NOT A DEATH SENTENCE. While there is still a high probability of recurrence, I am doing everything I can to battle it, and any recurrence should not be much more than a nuisance.
So what does it mean to begin LIVING again? I decided to start small. At the beginning of May we joined my parents for a few days of rest and recreation in Las Vegas. It is a 6 hour drive from here to there, and we had a great time dining, going to shows, relaxing, and even a modicum of gambling (I was a net winner at that). So what to do next? It had been my habit, pre-bladder-cancer, to take my birthday off work each year and go for a motorcycle trip by myself. This trip refreshed my spirit and made coping with the aging process easier. As an introvert I become energized during times spent totally alone, and motorcycling is a perfect hobby for me. I don't have a Harley, and I don't go to Sturgis or any other pack-mentality type of gathering. Instead I have a Honda ST1300, and I tend to ride alone, or alone with my wife as a passenger, or maybe on occasion with one or two other riders. But the birthday trip is always a solo trip - the first of the season.
Over the years it had expanded from one day to a long weekend. And I had skipped 2008 and 2009. And my birthday is in late May, making the ritual bike trip a perfect next step to begin living life again. So four days were set aside with destination to be determined on a daily basis, driven primarily by weather factors. This is difficult to explain to those that don't have the bug. A circle of friends of mine who have the same kind of bike developed a term for a fictitious drug, motorcyclene, which is akin to the endorphin high experienced by athletes. While not physically difficult, motorcycling demands intense mental concentration and tight control of fine motor skills for long periods of time, leaving the rider both exhausted and refreshed. My friend described it like this:
And so it went. Four days, 1,800 miles (almost 2900km), 3 nights in hotels, meals ranging from fine dining to a burrito at a roadside picnic table, and weather that was less than cooperative, I have returned - relaxed, refreshed, revitalized, and ready to consider LIVING again. Whatever you do for fun, be assured that the day will come, given hard work on your part along with your doctors, that you can consider living again.
This birthday was #51 for me. I have discovered through a friend that in Brazil the 51st birthday is always called "A good idea!" It seems that the national alcoholic drink, the caipirinha, is made with a distilled spirit similar to rum, called cachaça. While I have not tried either the drink or the ingredient, there is some appeal. As it turns out the most popular brand of cachaça in Brazil is Cachaça 51, and their advertising catch phrase is, "uma boa idéia." This translates to "a good idea." So like Coca-Cola is "the real thing," 51 is "a good idea." So my good idea to celebrate my good idea birthday was to go on a long motorcycle ride. Details with 25+ high definition photos and NO MEDICAL CONTENT whatsoever may be found on a separate page,linked below. Have a virtual slice of my 51st birthday cake and follow along by clicking on the photo or link below...
*Warren C. Harhay, June 1, 1999
The latter were quite frequent early on when medical interference was also commonplace. Having "graduated" now to the post-two-year cancer free status, my urologist decided to back off a bit. Clear cystoscopy and 3 BCG treatments in March, then no more visits to him until September 9. April-August created a five month window, the longest time I have gone between medical things since all this started over two years ago.For the past two years solid my primary focus has been doing research, doing medical treatments, changing diet, lifestyle, and supplement regimens, and even some hated exercise. I even devised a logic chart for a multi-modal attack on any type of cancer. Many good things have happened in addition to the cancer-free status - I have lost weight, my complexion has cleared up completely, my hair is growing back (filling in a male pattern bald spot, NOT from having been killed by chemo or radiation), I feel great, and I even look better. My own father did not recognize me when I accosted him in a crowded room a couple of weeks ago. Having five months now free from all this focus is entirely new territory. Now that I feel and look better and have nothing binding me to focus fully on health and medicine, I must admit that I was fully unprepared to deal with it. I suppose an analogy might be to put a lot of effort into climbing a mountain - so much effort and focus that, upon reaching the top, the climber is at a loss for what to do next. Take photos? Jump for joy? Have lunch? Open champagne? And so, nonplussed, our climber just stands there.
And that brings us to today's topic. I had steadfastly refused to plan beyond the next cystoscopy for over one year, and only cautiously planned things a couple of weeks beyond for the past year. Four times we planned big vacations just before the next cystoscopy Judgment Days (two to Mexico and two 10-day motorcycle trips), just to get what might potentially be one last big trip before any bad news. Having "stood motionless on top of the mountain" for nearly a month, it is now time to focus on mental health in addition to physical health.
To be sure the two are linked, and I have been maintaining a positive attitude. But this new approach goes beyond - it takes me to a place to begin to visualize NOT dealing with cancer, but to LIVING with cancer. Realizing and internalizing that BLADDER CANCER IS NOT A DEATH SENTENCE. While there is still a high probability of recurrence, I am doing everything I can to battle it, and any recurrence should not be much more than a nuisance.So what does it mean to begin LIVING again? I decided to start small. At the beginning of May we joined my parents for a few days of rest and recreation in Las Vegas. It is a 6 hour drive from here to there, and we had a great time dining, going to shows, relaxing, and even a modicum of gambling (I was a net winner at that). So what to do next? It had been my habit, pre-bladder-cancer, to take my birthday off work each year and go for a motorcycle trip by myself. This trip refreshed my spirit and made coping with the aging process easier. As an introvert I become energized during times spent totally alone, and motorcycling is a perfect hobby for me. I don't have a Harley, and I don't go to Sturgis or any other pack-mentality type of gathering. Instead I have a Honda ST1300, and I tend to ride alone, or alone with my wife as a passenger, or maybe on occasion with one or two other riders. But the birthday trip is always a solo trip - the first of the season.
Over the years it had expanded from one day to a long weekend. And I had skipped 2008 and 2009. And my birthday is in late May, making the ritual bike trip a perfect next step to begin living life again. So four days were set aside with destination to be determined on a daily basis, driven primarily by weather factors. This is difficult to explain to those that don't have the bug. A circle of friends of mine who have the same kind of bike developed a term for a fictitious drug, motorcyclene, which is akin to the endorphin high experienced by athletes. While not physically difficult, motorcycling demands intense mental concentration and tight control of fine motor skills for long periods of time, leaving the rider both exhausted and refreshed. My friend described it like this:On the open range the road, the landscape, and the machine all provide an experience that is for me soul centering. The rhythm of the ride is at once calming, reassuring. It is rarely achieved until more than a hundred miles have been traveled. This period of lonely introspection and intense observation yields a sense of appreciation and perspective of life that I've never experienced in any other endeavor. It is like meditation, but perhaps a little more like worship. The intensity of concentration required is at once enormous and yet completely liberating*.
And so it went. Four days, 1,800 miles (almost 2900km), 3 nights in hotels, meals ranging from fine dining to a burrito at a roadside picnic table, and weather that was less than cooperative, I have returned - relaxed, refreshed, revitalized, and ready to consider LIVING again. Whatever you do for fun, be assured that the day will come, given hard work on your part along with your doctors, that you can consider living again.
This birthday was #51 for me. I have discovered through a friend that in Brazil the 51st birthday is always called "A good idea!" It seems that the national alcoholic drink, the caipirinha, is made with a distilled spirit similar to rum, called cachaça. While I have not tried either the drink or the ingredient, there is some appeal. As it turns out the most popular brand of cachaça in Brazil is Cachaça 51, and their advertising catch phrase is, "uma boa idéia." This translates to "a good idea." So like Coca-Cola is "the real thing," 51 is "a good idea." So my good idea to celebrate my good idea birthday was to go on a long motorcycle ride. Details with 25+ high definition photos and NO MEDICAL CONTENT whatsoever may be found on a separate page,linked below. Have a virtual slice of my 51st birthday cake and follow along by clicking on the photo or link below...
A Good Idea!
*Warren C. Harhay, June 1, 1999
Subscribe to:
Posts (Atom)
Posts
