3rd BCG Maintenance Series #3 of 3 - September 25, 2009
I was a little surprised when the doc's office called Wednesday to confirm my BCG appointment at 9AM instead of 9:15, but a quick check of the notes proved that they were correct. I had high hopes that this one would be both easy and over quickly. I was processed in with urine tested by 9:05 and the BCG dose was diluted and ready by 9:10. The doc had not arrived in the office yet, but we were assured that I would be his first stop. And so it was a few minutes later. The doc was surprised that my symptoms last week were slightly milder than the week before, as most people have progressively more intense side effects. I suggested my immune system was in top form, and Dr. Hopkins suggested that I was just weird. We discussed the schedule upcoming. Next will be an 18 month cystoscopy in 3 months, which is now scheduled for December 3 at 11AM. If all goes well, no BCG until after the next cystoscopy in March. I was delighted to hear it. He did not permit me to schedule March yet, preferring to see the cysto results in December first.
The trip home was uneventful except for a major construction traffic jam, so my wife used back streets to get around it, saving maybe half an hour. Hydration plans executed, the symptoms started just before 3 hours post instillation and escalated rapidly. Much worse than the week before - about 4.5/10 on my subjective misery index. After all the urinary symptoms were concluded (around 7PM), I was beset by the expected flu-like symptoms of exhaustion, stiffness, minor body aches and cramping, and a pretty good headache. Plus, as usual, a total loss of appetite. By 8PM or so I decided to discard my macho-male persona and took 1000mg of acetaminophen. It took the edge off the pain, but perhaps an NSAID like ibuprofen would have been better. Unusually, I slept for the most part from 5PM until 7:20PM, and was back asleep again by 11PM. This morning I am still quite tired, and there is a lot of stiffness. Appetite has returned with a vengeance, though! In a day or two I expect that urination will again be a happy time, and in a couple of weeks I hope to be back to 100%.
I have received some communications from new readers of this blog. One from Mike, who had his very first BCG this week. He instinctively clenched up on the tube during instillation, and had to force himself to relax to allow the process to continue. This is why I use the stress balls, breathing techniques and other distractions. Generally if I instinctively clench, I squeeze the stress balls and focus on pointing my toes, which seems to do the trick. Another more disturbing note came from Robert. I sent a reply, but his email bounced (twice). So try again if you are still reading. His feedback is reprinted below:"I start my 3rd round of 3 bcg treatments in 12/2009. No Superficicial Cancer at present. My sexual activity is diminishing from all these treatments. I don't like these instillations."
I think it would be difficult to find anyone who would disagree with Robert's comments...
As for me, I was skipping breakfast and all fluids before each morning BCG, and then having a normal lunch. Yesterday I had a big lunch of spicy food that was high in protein. Big mistake if the BCG is a difficult one. Would have been much better off with something smaller and easier to digest. Felt like I had a softball in my gut all day, which contributed to a strong feeling of nausea in the evening. I think any time I smell bleach or disinfectant wipes, I will feel nauseous for a while. Perhaps I need a better facility, like the one indicated in the second picture!
You can see the updated misery chart below, and a link to the details at the bottom of this posting.
(click to enlarge)
I made the final update (for this series) to the "pee by pee" details on the Series 3 Backup Page. (4/10 on the grossout scale).
Mike, I had to laugh out loud at your comment. We have to realize that it's all about these doctors and their egos! Never mind what is happening to us.
Key is to concentrate on some part, ANY part, of the body except the "target area." So don't just squeeze the stress balls, focus all your feelings and attention on squeezing them!
Steve,Yesterday went much better. I told the doctor I was trying my best to relax so it would go in easy and he helped me by saying, Take a deep breath and it went some and after 3 deep breaths it entered with not to much pain. Thanks Steve
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.
3 comments:
Steve, I will try a stress ball the next treatment on Tuesday.The doctor always acts like he gets very irratiated when he runs into a road block.
Mike
Mike, I had to laugh out loud at your comment. We have to realize that it's all about these doctors and their egos! Never mind what is happening to us.
Key is to concentrate on some part, ANY part, of the body except the "target area." So don't just squeeze the stress balls, focus all your feelings and attention on squeezing them!
Steve,Yesterday went much better. I told the doctor I was trying my best to relax so it would go in easy and he helped me by saying, Take a deep breath and it went some and after 3 deep breaths it entered with not to much pain.
Thanks Steve
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