My health, stamina, and well-being have improved slowly over the past three weeks. I am not getting tired in mid-afternoon early in the week, and the effect is decreased even later in the week. The 5 days in California were awesome - weather, food, wine, everything. We even got a cool rental car - a Saturn Sky, pictured here (click to enlarge). It's a real eye-catcher in red, which is my favorite color, and it drew a lot of attention from folks and their cellphone cameras. I have slowly been adding reviews to my restaurant review site, which has taken time from updates over here. In other news, our church is attempting to buy our first building and property from another church, and it's been grueling for me working that on top of the day job. The worst is over, for now, as others will be helping out a lot when (if) we go forward.
Today's topic is courtesy of Robert S. in New York, an active member of our little Bladder Cancer fraternity. Robert can use your prayers and good will as he goes in for TURBT #2 tomorrow. Memorial Sloan-Kettering prefers to do 2 TURs all the time, the second done after 6 BCGs to verify grade and staging. Oddly, they don't routinely do the chemo bake post-TUR, which is a very effective treatment with ample supporting recent evidence. So maybe having that big reputation that MS-K has isn't "all that" after all... In any event Robert is dreading that his cancer T1 might be upgraded, so let's pray that won't be the case. He passed on this news article on how a small dose of aspirin daily can not only improve your heart health and reduce heart attack risk, it also strongly correlates with increased success rates for BCG treatments. Read on for details...
NEW YORK (Reuters Health) - The use of aspirin as a cardioprotective agent significantly reduces recurrence among patients being treated for high-grade, non-muscle-invasive bladder cancer, the results of a small case-control study suggest.
The subgroup of patients with carcinoma in situ and high-grade papillary bladder cancer has a "high risk of tumour recurrence and progression and thus represents an ideal cohort for evaluating chemopreventive agents," the research team, led by Dr. Jason R. Gee at the University of Wisconsin-Madison, comments in the March issue of BJU International.
Their study cohort comprised 43 such patients treated with intravesical bacille Calmette-Guerin. Twenty were taking aspirin (81 or 325 mg/day) for cardioprotection. The 5-year recurrence-free survival rate was 64.3% among those taking aspirin versus 26.9% among those not taking aspirin (p = 0.03). After adjusting for multiple confounders, aspirin correlated with a significant effect on recurrence rate (hazard ratio 0.179, p = 0.001).
Other independent predictors were maintenance treatment with intravesical bacille Calmette-Guerin (HR 0.233, p = 0.02) and smoking history (HR 3.199, p = 0.05).
"The results of the present study support the further investigation of aspirin and other NSAIDs as preventive agents in patients being treated for non-muscle-invasive bladder cancer," Dr. Gee and associates conclude.
My statistics training tells me that the low p values are very significant for correlation (though causation is still speculative). For instance the p value of 0.001 implies that there is less than one tenth of a percent chance that the difference between the samples is random. Pretty good analysis here, cheap and easy to implement, with benefits for your heart as well as your Bladder Cancer treatments!
Two weeks from today I will "celebrate" the one-year anniversary of my bladder cancer diagnosis. Despite the feeling that it's only been a few weeks since then, nearly EVERYTHING has changed about me and my life in the last 50 weeks. There was the initial shock, two quick surgeries, the stress of awaiting lab results, BCG series, and judgment days. There was a re-ordering of priorities, physical and spiritual. There was the complete and total change in diet starting August 1. There was the addition of vitamins and supplements. There was trying to work and act like it was all no big deal. And lastly I have added (and hated) exercise. It's been a whirlwind of change. Trying to figure out when (or if) there was time to go play in between medical events, and a new appreciation that life is, indeed, very short was another new experience.
One thing that's struck me is how others react to (and have reacted to) the news of my cancer diagnosis. In reality, there are only two frames of reference that folks have available to them based on their indoctrination and experience.
1) You are going to die. It is only a matter of how soon and how awful the process.
OR
2) You are fine because the cancer has been removed and killed off, and it won't come back. Really the whole thing is over and can be forgotten about as an unpleasant episode.
What people need to know (and are afraid to ask) is whether you are in the first or second category. They desperately hope you are in the second group, so they will "fish" for you to say things that suggest that's the case. Even if you don't intend to, they will interpret anything you say to put you in category two.
Bladder Cancer is unusual in that it's hard to say you are in either category. For high grade cancer like mine, the odds are uncomfortably high for mortality. With early detection and treatment, the prognosis is improved, but not to the degree that any doctor will declare you out of the woods - ever. For low grade bladder cancer the odds are much better. But the reality of bladder cancer is this - you are NEVER going to be in the second category. I will have annual cystoscopies FOR LIFE. Because you can't ever tell people it's finished, they become very uncomfortable with the only other alternative they know - painful, ugly death.
How do people deal with the two scenarios? If they believe you to be in the first category they fell really awful. Because it is bad news, and especially because there is nothing at all that they can do to make any of it better. Seeing you just reinforces that feeling, so you become a pariah, and they will try avoid you, even though they are truly sympathetic.
On the other hand, if they believe you are in category 2, they are truly happy for you. Truth be told, they are equally happy for themselves not to have to be bothered about it. And they will treat you as they normally would, rarely if ever mentioning it.
How do I know this? Because that's exactly how I responded to people with cancer diagnoses. So rude but so true. Having been there myself less than a year ago, I can recognize it in others. Folks deal with me the very same way. Sort of a "please tell me you're in category 2, and we can get on with things..." attitude. Because of bladder cancer's long road before we know if we are ahead of the game (not quite category 2), true status of your situation makes nearly everyone unhappy and uncomfortable. And there is still nothing they can do for me outside of sympathy and prayer.
What I spend a lot of time doing is reassuring others. Since it's not over with to be forgotten about, they are fearful that I must be in a long, unpleasant Category 1 process. Frequent reassurances that things are going well are required. It turns out that dealing with my cancer is even harder on loved ones and friends than it is on me. As it turns out, there are a few resources for them. Anne Orchard wrote a book called Their Cancer - Your Journey. She left a very encouraging comment on David F.'s blog when he was wrestling with this very issue.
Anne made the point is that there's also nothing you can do to guide others through their journey of dealing with your cancer, other than to be strong and set an example. So don't even worry about it. This means reassuring when you can, and not being bothered when some avoid you. While my situation is not a secret in the workplace, some don't even know, and I don't mention it unless there's a need. Others have convinced themselves that I'm OK, others are still worried that I will be dying soon, and some work hard to avoid me altogether. I try to take it all in stride.
One last word: narcissism. While all of us are self-centered to some degree, having cancer and what you go through and how you adapt IS all about you. Dealing with your having it and what you go through and how you adapt is not about you at all - it's about them. These are two entirely different problems requiring different paths to solution. I would argue that now I have cancer, it really IS all about me. But that fact in no way makes me more interesting.
Need to contact me? Use the photo-link near the bottom of this column.
Had an interesting annual checkup - no cysto, but ultrasound and blood/urine tests. Bottom line ALL CLEAR now 14 years and counting! God is good!
My parents were from a generation that feared seat belts. In May of 2013 they were both ejected from their vehicle (my father would have said "thrown clear") and did not survive. Automobile safety technology has dramatically improved since the 1950s and 1960s.
People, if you are traveling over 35mph, WEAR YOUR SEAT BELTS!
BLADDER CANCER ROLL CALL
Recent Results
2022
ME! - Steve K. in Bodrum, Türkiye ALL CLEAR on June 10. - 14 yrs
Wil S. in Chicago ALL CLEAR on March 22. - 15 months HK in Toronto ALL CLEAR on Feb 5. - 13+ years
2021
Steven S. in Tennessee ALL CLEAR on Oct 27. - 10 years Roy B. in Alabama ALL CLEAR on May 4. - 9 yrs Scott in South Carolina ALL CLEAR on April 20. - 6.5 yrs
2020
David F. in England ALL CLEAR on October 2 - 14.25 yrs and finished with cystos now!
2019
Julie M. in Illinois ALL CLEAR on June 15. - 8+ yrs
Roy B. in Alabama ALL CLEAR on June 24. - 8 yrs
2018
Ed B. in Washington ALL CLEAR January (but battling lung cancer now). - 9 yrs Bladder Cancer Free Patrick P. in LA area ALL Clear on November 28. - 9 years Sebastián in Argentina ALL CLEAR on October 9. - 5 yrs John B. in Minnesota ALL CLEAR on May 24. - 5 yrs Doug B. in Tennessee ALL CLEAR on April 7. - 3 yrs Ben F. In Louisiana ALL CLEAR on Feb 22. - 6 yrs
Need to contact me? Use the photo-link near the bottom of this column.
Short Summary of My Situation
On March 31, 2008 I was diagnosed with bladder cancer. As a non-smoker, at my age, with no family history of cancer on either side, I was quite surprised. The cancer was T1-G3 and Non-Invasive. It's not immediately life threatening, but my bladder is still at risk. I have been CANCER FREE via surgery for 14 years now, an important number - having exceeded both the two year ultra-high-risk and 10 year medium-risk recurrence periods. Less than 2% chance of the cancer returning now, not zero, so lifetime annual cystoscopies are in order. In addition I have completed 6 weekly treatments of initial BCG immunotherapy and nine 3-week maintenance rounds with moderately unpleasant side-effects. I have implemented radical dietary changes (limited pork, shellfish, sugar, ZERO artificial sweeteners (except stevia), processed flours, or chlorinated water), take several vitamins and supplements including the Budwig Flax Oil Cottage Cheese (FOCC) mix, resumed PectaSol-C MCP,and added regular light exercise.
Every year my doctor will visually inspect for new cancer growth via cystoscope, or a combination of ultrasound with blood and urine tests. While the probability of recurrence is not zero, the risk of disease progression is dramatically decreased now. The downside picture is merely a nuisance. Annual checkups for life. And any new cancer leads to another TURBT surgery to remove and analyze what's there. Probably nothing more beyond increased surveillance after that.
I have pursued an analytical approach to Complementary Therapies - those that can be done IN ADDITION TO what the doctors are doing. There are over 200 "unproven" approaches out there, and some work sometimes. I have conducted an objective, systems-based analysis many of them to determine which ones work under which conditions, looking for common, science-based threads. My current set of things I am doing is described in detail in this post.
All diagnosis, prognosis, and medical treatment recommendations have been validated with second opinions from a urologist in Indiana and Dr. Lamm in Arizona.
I am a great fan of life and doing something useful with the limited time we have on this earth. I enjoy my church, my home life, and my retirement.
My hobbies include extensive international travel, experiencing new cultures, and consuming fine food and wine (both at home and dining out).
On March 31, 2008, I received the very unwelcome news, "You've got bladder cancer!"
I was born in 1959, and I am a white, male, American. I married at age 24, and in October of 2008 we celebrated our 25th anniversary. We have no children, and that's OK with us. I had a vasectomy in 1999, so no changing minds on that decision - and the docs dismissed that early as any type of contributor to the situation.
I am six feet, zero inches, and was 255 pounds when all this started, but weight decreasing now thanks to surgeries and this wake-up call. I am NOT saying cancer comes from being overweight, but weight exacerbates all other problems. (Down to 240 pounds as of 9/1/08, down to 230 pounds as of 12/31/08, down to 220 as of 5/15/09, but back up to 230 and holding since...)
My blood pressure (checked and tracked weekly) runs a hair high - 130/90. Been steady at that level for many years. Been higher lately - stress will do that.
I don't smoke, and never have smoked anything, including marijuana. The docs had some problem believing me, as smoking is a strong indicator for bladder cancer. I tried asking if I should take it up now to break even, and they finally let it go. I find the whole idea of smoking distasteful, having suffered in a home where both parents favored unfiltered Pall Malls. The docs claim that secondhand smoke at home from birth through my high school years would not be a factor.
They also suggest that exposure to radiation and chemicals can cause this. I worked in a chem lab at college and there was stuff around; but my exposure was not that much and I never rubbed my groin on any of it!
I do enjoy an occasional alcoholic drink - usually a couple of glasses of wine with dinner or maybe a beer or two with pizza or during a televised sporting event. My use is less than daily and almost never more than two in any day.
I was diagnosed with gout in 2004. Gout is a crystallization of uric acid in the joints - primarily in the left big toe. These crystals cause irritation and inflammation - then BIG TIME PAIN. Gout supposedly comes from eating rich foods and poor circulation. I may also have a recessive gene for gluten sensitivity which may have contributed; but I have not as yet investigated this. I controlled the gout successfully for a while by super-hydrating (one gallon plus of fluids per day) but 4 international trips proved that I could not maintain or control this outside of home and an air-conditioned office. So in 2006 I began taking 75mg of allopurinol daily. This is also NOT a factor for bladder cancer. Subsequently I changed my diet and lifestyle and lost a lot of weight. Now I am not taking any medication for gout, nor have I had an episode in many years.
The 5 days in California were awesome - weather, food, wine, everything. We even got a cool rental car - a Saturn Sky, pictured here (click to enlarge). It's a real eye-catcher in red, which is my favorite color, and it drew a lot of attention from folks and their cellphone cameras. I have slowly been adding reviews to my restaurant review site, which has taken time from updates over here. In other news, our church is attempting to buy our first building and property from another church, and it's been grueling for me working that on top of the day job. The worst is over, for now, as others will be helping out a lot when (if) we go forward.
Robert can use your prayers and good will as he goes in for TURBT #2 tomorrow. Memorial Sloan-Kettering prefers to do 2 TURs all the time, the second done after 6 BCGs to verify grade and staging. Oddly, they don't routinely do the chemo bake post-TUR, which is a very effective treatment with ample supporting recent evidence. So maybe having that big reputation that MS-K has isn't "all that" after all... In any event Robert is dreading that his cancer T1 might be upgraded, so let's pray that won't be the case. He passed on this news article on how a small dose of aspirin daily can not only improve your heart health and reduce heart attack risk, it also strongly correlates with increased success rates for BCG treatments. Read on for details...
Posts
