Happy Crazy 8's Day! (8/8/08) I feel much better than yesterday by contrast, though pretty tired and sore in the bladder region. Side effects have cleared up, so once the soreness improves I should be on track to "normal" again. Instillation was a piece of (sugar-free) cake. Dr. Hopkinslooked at the log of the first five treatments and said it was consistent with his expectations - increasing symptoms week by week. He said to expect a bit worse for this round, and he was right about that! I also told him that I had chosen a doc in another state for second opinion via a roundabout way (Dr. Chuck), and that it was probably someone he knew. He was instantly curious, and it turns out the doc in question was a year behind Hopkins during urology internship and residency at Indiana University. Dr. Hopkins had high praise for his colleague, describing him as "brilliant, dedicated, and hard-working." Just the sort you would want for an opinion. Then he added, "Tell him that I taught him everything he knows!" jokingly, and gave me a note to pass on. We all hope that the BCG will do the trick, but Dr. Hopkins affirmed that there's no point in scheduling the next rounds of BCG until after the cytoscopic inspection onOctober 23 - Judgment Day. He asked if we had any questions and left us on our own.
I will be setting up a transmittal of records and scheduling an appointment with the brilliant doctor next week. Dr. Chuck also advised me to go ahead and do an "e-Consultation" with Dr. Lamm in Arizona - good for a potentially different point of view and a bargain at $300. I believe my insurance will cover the consult from the other doctor, but not the travel expenses or the Lamm consult. In the big picture it's a small price to pay. I will ask both of the docs to confirm the diagnosis, grading, and staging, review the treatment plan, and discuss alternatives for what should happen after the cystoscopy whether new growth cancer is observed or not. More on this topic will be discussed in a later post.
Even though the waiting room was empty, Dr. Hopkins was busy and running late. BCG was not instilled until 11:15AM (from our 10:30 appointment). Endless summer construction had shut down half of the northbound Interstate, and it took about 80 minutes to get home. Did my normal hydration routine, and side effects hit about an hour after I voided the initial BCG, earlier than ever in the past. They got worse quicker and lasted longer, too. I increased hydration to try to fully flush the system and ended up going 3-4 times per hour. This approach did the trick, but put more stress on the bladder and associated systems. By 5 PM I had a mild headache, a full blown stomach ache, abdominal cramps, bladder pain, no appetite, etc. No one of these symptoms amounted to much, but having them all for most of the day was pretty miserable. My entire day is well-summarized by the T-shirt at the left. (And no, I don't want one!) Visible side effects were mostly gone by 10 PM, and I was up every hour or so through the night draining out the remaining liquid. All the details are now updated at the bottom of the Installation Page (2/10 on the gross out scale). I was drinking a lot of iced tea (at room temperature, sweetened with stevia); water flavored with organic lemon/lime/orange juice and sweetened with stevia; and spicy lemonade* for variety. But apparently there's a soft drink made and distributed in the African country of Ghana that might have been more appropriate - see photo at right...
Friday has been much better. Got up early and started slow hydration. Been "going" a bit today (not nearly at yesterday's rate), and each time there's a tiny bit less soreness and discomfort. I'm hoping that the recovery will be as early as tonight or tomorrow, and it looks good so far. Thinking is much clearer today, though less than 100%, and so doing some light work and this blog have become possible again. Will probably start the new dietary regimen and resume the MCP this weekend or early next week. My mood and attitude are dramatically improved, for which everyone is thankful.
*To make 1 gallon of SPICY LEMONADE combine: Juice of 5-6 large organic lemons (20-24 oz) 1.25 cups (20 oz) organic Grade B Maple Syrup (you can use Grade A, but it's expensive!) While maple syrup is less severe than table sugar or high fructose corn syrup, it's still sugar, and it still yields blood glucose - cancer's favorite food. I suggest using only stevia (a natural leaf extract) as sweetener. Since concentrations vary, you will need to experiment to find the correct amount! 1 teaspoon of organic Cayenne Pepper 10 cups (80 oz) of purified or spring water(non-chlorinated water) The resulting drink looks like tea, due to the Grade B syrup. Can be served cold, cool, room temp, or hot.
If you just want to try it, one serving is: 2 tablespoons fresh organic lemon juice 2 tablespoons organic Grade B Maple Syrup Sweeten to taste with stevia (a natural leaf extract found in health food stores) 1/8 teaspoon (or more) organic Cayenne Pepper 8 ounces of purified or spring water(non-chlorinated water)Can be served cold, cool, room temp, or hot.
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.
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