I completed a series of 3 BCG Maintenance treatments in early May, and I have dawdled a bit on posting the results. This behavior, as well as my very infrequent posting on the blog, are symptomatic of a very good thing. Cancer is no longer a major factor in my day to day life. It's a nuisance, a pain, and a distraction. Somewhat like having to go in to the dentist for a root canal every once and a while. Nobody likes it, but it has to be done, and then you are back living life again, having mostly forgotten about it after a day or two. So how was it this time? Fricking awful, as usual, but temporary. If I could go back and do all the BCGs again (not that I want to), I would do a lot of things differently. I started out with the philosophy that hydration was the only remedy, and the worse it was, the more hydration was needed. Was drinking almost a gallon per hour and making things worse by flushing out electrolytes and getting extra side effects from that. I also suspended almost everything a few days before treatments - all supplements, vitamins, alcohol, whatever. A lot of times I blew off the deep breathing exercises, making the catheter insertions more painful and recovery from it taking longer. Probably a few other things as well. I also focused my data gathering and reporting on urinary symptoms, which can be spectacular and colorful, but are not really meaningful to the experience. I was describing what the urine looked like, but very little about how it felt each time, or how I was feeling in general. I even grabbed onto the term "malaise" to describe my general blah feeling, body aches, mental dullness, and physical exhaustion - most of which was caused by over-hydration and electrolyte deficiency. This time I tried to focus more on the general feel of things, including minor inconveniences for a few days after, which I had formerly dismissed in order to pretend to be mentally tough. Maybe good for the ego, but not all that helpful for the audience. I also did not discontinue any supplements or other lifestyle until the day of the treatments, except for the 3rd one - when I took a beta glucans supplement early in the morning before the treatment. If you were wondering if beta glucans are worth the expense, or whether they do anything, I suggest you compare treatment 2 and 3. Normally #3 would be worse, and it was much milder in this case. Here are the symptom charts from this series:
With a 3 year gap since the last time, the first treatment was no big deal. Just an inconvenience. The second treatment pretty much mirrored 2014, as did my protocol - no supplements, medium hydration including Gatorade, etc. I have had much worse times with BCG in the past, but after feeling so good for so long, this second treatment was pretty tough on me mentally. For the third treatment I took a chance and did my normal, empty-stomach, early morning beta glucans supplement. The difference was quite astounding. Even so, I am not eager to do it again, even though the original protocol suggested by Dr. Lamm would indicate one final series of 3 maintenance treatments in 2020.
Dr. Hopkins has mentioned several times that he is unsure of the benefit of continued BCG maintenance, but he has gone along with the Lamm recommendation from the beginning. We did skip one series by broadening the timespan from 1 year to 2 years early, and ended up skipping another by broadening the 2 years to 3 years starting last time. We may end up blowing off the series in 2020. If you ask me now, a month later, I'd say 2020 is not going to happen. Not so much because of the nuisance, nor that I think BCG is not effective. But more so the other supplements, lifestyle, and diet changes I have made have improved my health to the point that I think what I do now is more powerful than another BCG series would be. So why spend another 3 days in discomfort, running to squat on the toilet and doing the biohazard thing? I may feel differently then, if insurance is still paying, and I am in a "cowboy up" mood. Time will tell. In the meantime a lot of you have come and asked me something to the effect of: "Exactly WHAT is it that you are doing now?" I suppose digging through the blog posts to find what I did and then translate in things that I changed my mind on is a big pain. So I plan to make another post later on that summarizes my current protocol and provides the rationale for each. I need to ponder it for a bit and then get in the mood, so no promises of when, but hopefully later this summer.
Due to some complex travel plans, we are about 3 weeks earlier than last year for Judgment Day. The setting is the same, Spring in Utah, and the day is nice, if not as bright as last year - to be expected for April rather than May. Last year I did not even think about the cysto at all, not even the day it happened, working on business finances for month-end closing until about an hour before the procedure. That was a big mistake. Relaxation was not achieved, and the recovery period was much longer than it should have been. This year would be different!
This year I avoided doing anything financial (despite being the day before Tax Day) and kept the business work superficial. And I deliberately spent time starting 4 hours prior to the scope doing relaxation, deep breathing, meditation and prayer. Time well invested!
The 25 minute drive to the office was uneventful, and the check-in was routine. The waiting room was packed, and even though we were shown to the exam room quickly, it was a while. Dr. Hopkins breezed in at 2:50 for my 2:00 appointment. Not much had changed, except Dr. Hopkins has a few more grey hairs, I have a few less hairs of any color, and I had shed about 50 pounds. The Doc was looking svelte as well. Lidocaine and scope, assisted by deep breathing exercises, was fast and painless. Outcome was as hoped for - ALL CLEAR. Wine and fancy snacks to celebrate. BCGs to begin in 15 days or so, details to follow!
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.