Enough About Me - Who Are YOU People? - August 15, 2008
Running a blog and spilling my guts out on the internet has been a great venting tool for me. Besides catharsis, it's also become an easy way to keep family, friends, and colleagues up to date on the situation - though there are still many who don't or won't read the blog. In fact only about 30% of the people on my list of folks to keep updated read this blog on a regular basis. Not complaining - just surprised. And now it seems to be coming into its own as a tool to help to others out there in cyberspace. This domain (blogspot.com) is fully owned by Google, so my blog is integrated with the Google search engine. It's taken a while, but now if you Google "bladder cancer" with a few other words that appear here frequently, you will get a link near the top of the list for this site! And if you click on that link, it's my hope that you find something useful, interesting, or entertaining here. I have had quite a few strangers hitting the blog of late from Google searches. One fellow from Canada typed in "male bladder cancer treatment of bcg" last night and spent over half an hour on the blog, looking at over 30 different pages. He sent me a follow-up question, too. More on that in a later post. Another person typed in "bcg bladder treatments 6 weeks pain" and spent no time at all on the site, which seems odd because I have a lot of stuff on that topic. Another one Googled "my story with t1 bladder cancer" just like I have, but that person didn't stay long either. Whatever! I must say my favorite Google hit so far was yesterday evening from a guy in Michigan who searched on "turbt drinking beer." That WOULD be a guy, right? Anyhow beer is a perfectly fine way to hydrate and take the edge off (within reason) if you are not taking any drugs that would be affected. I'd recommend American lite beer, which is nearly pure water anyway! He spent 23 minutes on the site and looked at 16 pages, so I hope he reached the right conclusion!
How do I know so much about all of you? First of all, I don't know a lot about any individual, but I can see what you Googled, how long you stayed, how many page views, and where your Internet provider is based - which may not at all be where YOU are located. For instance my friend TK lives in Albuquerque, but her ISP is based in Denver. So the internet is not revealing any detailed personal or useful information about you all. But you do make an interesting collection of readers. You can see who is looking into the blog also. Just hit the Sitemeter button located near the bottom of the left-hand column, then hit the "By Details" link under RECENT VISITORS section of the left column, then click on any line number displayed (not the ISP name) to get details for any visitor and snoop away! I shall continue to post here, and friends, info-seekers, and other voyeurs are welcome to read all about it. Welcome all!
Wow Steve, good for you! I'm glad you not only have a place to vent but your rantings, ravings and well researched and well written articles are helping others! Bravo! I haven't been here in awhile because I have been busy trying to keep up with my own blog after vacation. I'm doing a little catching up with all my friends now. You will probably see me here more than Gus. He is a bit squemish you know. I hope you are doing well. I pray they don't have to do the radical surgery on you! My love and prayers to you and Katherine. I'll have to check out that site meter. I don't have one of those. I didn't know it would tell you so much!
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.
1 comment:
Wow Steve, good for you! I'm glad you not only have a place to vent but your rantings, ravings and well researched and well written articles are helping others! Bravo! I haven't been here in awhile because I have been busy trying to keep up with my own blog after vacation. I'm doing a little catching up with all my friends now. You will probably see me here more than Gus. He is a bit squemish you know. I hope you are doing well. I pray they don't have to do the radical surgery on you! My love and prayers to you and Katherine. I'll have to check out that site meter. I don't have one of those. I didn't know it would tell you so much!
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