Eve of the Final BCG Treatment, General Cancer Info, and Looking Forward - August 6, 2008
My BCG experience has so far been pretty mild. Certainly not on the level of ADR in England. And now he's sunning himself on a beach in the Azores today without a care in the world. So life does go on. What to expect for the last one? A quick instillation from Dr. Hopkins, followed by a pretty rough day of hydration and voiding. It's not so much the physical pain or burning, but it's rough because you cannot sit for more than 15 minutes, or lie down for more than 30 - the last 5 of which are occupied with fidgeting and clock watching. And you have to sit to pee and do all the special biohazard handling, which can be tricky when you are in a hurry! Last time the side effects started 4 hours after instillation and lasted nearly 4 hours, the longest to date. But with the hydration regimen there's no extra physical discomfort, because there is plenty of fluid to clear everything out each time. There is a chance that tomorrow could last even longer, which means I shall have to keep up the 32 ounces per hour input/output pace perhaps even past 7 PM. Still, it's only one day of running to pee every 20-30 minutes, then hourly through most of the night. I wonder if all that counts as exercise? My bladder sure feels like it! Details of the instillation and subsequent voiding and side effects will be posted on the Installation Page sometime tomorrow evening.
If all goes well Saturday begins my three months of freedom. I will probably try to ride the bike somewhere and work a 5-day week next week for the first time in a long time. I wonder if I can get used to that again! We have our air tickets to travel to Acapulco for a week in September with another couple, celebrating our 25th anniversary two weeks in advance. I should also work in a couple of three or four day weekends for some motorcycle trips - doesn't matter where, as long as the weather is good! And I may have some business trips in there as well. Then Judgment Day on October 23. A clear reading there will improve all subsequent odds, so all your prayers and well-wishes should focus on that date!
In other news my good friend Dr. Chuck researched two lists of potential doctors from which to get my second opinion. While urology and oncology are not his fields, he's been around enough to know the difference between valuable experience and attributes of a doctor from less good, or even questionable. He selected two clear winners from the pack. I am working to set up consultations with both - one via mail (my records) and telephone, and the other via mail (records) and probably a personal visit out of state. I will fill you in on exactly who and why they were chosen in a future post - if the details work out OK.
Another teaser for later - my company, in addition to the excellent benefits that pay for most of this including my time off, has hooked me up with a Personal Health Coach. Her name is Crystal, and she is a Registered Nurse based in Maryland. She calls every week or two in a pre-arranged appointment for half an hour. Since the doctors are prescribing medical advice and treatments, she steers clear of those areas except to say, "Do what the doctors tell you!" Instead she is focusing on dietary habits and practices. Since Kathryn is in charge of the kitchen, we use a speakerphone and take the call at home in the evenings, so we can both participate. Crystal has suggested some radical changes to our diet, and most of it is pretty easy to implement. We have also learned that there are some basic cancer facts that I was unaware of - Cancer loves sugar (and starch that turns into sugar); Cancer hates oxygen; Cancer likes an acidic body environment and does poorly in alkaline body chemistry; chlorinated water can kill healthy bacteria which then cannot fight Cancer. Immediately for us that means using bottled spring water (until we get a house treatment system, which we may or may not do), eliminating all sugar and most starch, limiting meats and increasing fruits and vegetables proportionally. There are some other more radical changes that we are going to try over the next month, and I will share them with you when we decide they are helping - or not. I was really clueless about the sugar. I was using Oreos to cushion my stomach for drugs post-surgery, for goodness sake! What a bad idea that was!!! But it's not difficult at all now to say, "No thanks!" to the cake and donuts and candy that's always floating around the workplace. I love sugar as much as the next guy, but I have no desire to feed the cancer cells! And living at altitude means less oxygen, which is bad, but that can be improved by the deep breathing exercises. That's something I should be using for more than reducing stress on instillation days. So there are many things to occupy future blog postings even during my upcoming 3 months off of active cancer treatments. Stay tuned!
2 comments:
Anonymous
said...
CONGRATULATIONS on making it to your last treatment this round!! I've already started praying for these next three months and your Oct 23 check.
I was just diagnosed in Feb. 2014. I have to comment here because one of the first things I did to feel in control because of the waiting, was to start researching alternate, valid things to do along with whatever may be coming. I first came on the info of sugar and started a ketogenic diet and have been strict with it since. Also feel great with this new eating as well. But, I had a frustration with how hard it was to dig up the info and as I have gone along, some providers act like I'm crazy, the dietician I went to never heard of it and others say if it makes me feel like I'm doing something......I am going to order the modified citrus pectin (wish it had a different name-reminds me of GMO) you spoke of here (wish I knew of that as well!). I was misdiagnosed by local pathology and by the time I got the second opinion, too late for BCG. But, we move forward. Finding this very helpful. Thank you.
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.
2 comments:
CONGRATULATIONS on making it to your last treatment this round!! I've already started praying for these next three months and your Oct 23 check.
I was just diagnosed in Feb. 2014. I have to comment here because one of the first things I did to feel in control because of the waiting, was to start researching alternate, valid things to do along with whatever may be coming. I first came on the info of sugar and started a ketogenic diet and have been strict with it since. Also feel great with this new eating as well. But, I had a frustration with how hard it was to dig up the info and as I have gone along, some providers act like I'm crazy, the dietician I went to never heard of it and others say if it makes me feel like I'm doing something......I am going to order the modified citrus pectin (wish it had a different name-reminds me of GMO) you spoke of here (wish I knew of that as well!). I was misdiagnosed by local pathology and by the time I got the second opinion, too late for BCG. But, we move forward. Finding this very helpful. Thank you.
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