One thing that is very difficult in cancer situations is dealing with the people around you who DON'T have cancer. These folks want first and foremost to know that you are OK, and that you are not about to die. Beyond that, few will want details. Almost all will say, "If there's anything I can do, please let me know!" But nearly everyone will be frustrated, because there is really nothing they can do to help out someone who has cancer - UNTIL NOW! For bladder cancer the help needed is not much - a ride to and from the hospital for TURBTs, maybe some meals at home during recovery. Rides to and from BCG are nice to have, but not fully necessary, and meals during BCG days are not a big priority. And for flexible cystoscopy, even the ride is not really necessary. For other kinds of cancer, especially those involving chemotherapy or radiation, much more help can be provided. Certainly rides to and from treatments and meals for days afterward. And now I have some information on a new group that is doing something really helpful. Cleaning For A Reason is a non-profit organization that provides one professional house cleaning service per month for up to four months for women undergoing cancer treatments - primarily chemotherapy, but others are considered. The charity is very careful to check that their services are provided to those with legitimate needs. Even so, the demand for their services is so great that they limit the applications to 200 per week - 50 per day on Monday through Thursday. Cancer patients virtually line up to apply during the open windows, and they process about 8 applications per minute until the limit is reached. These statistics can be somewhat discouraging, but they show how deep the need is.
Since few of us bladder cancer patients would need this service, and even fewer of us are women who would qualify, why do I mention it here? Simply because ALL of us can participate in helping cancer patients by supporting this charity! If people ask you what they can do to help, a donation here provides direct help in the most practical way - professional house cleaning. So I encourage you to check out the Cleaning for a Reason Website HERE, and see if you can encourage yourself or your friends by providing them this opportunity to give some real help to some that are suffering through cancer treatments. If you have a cleaning service or know somebody who does, more affiliates are needed all over the US and Canada. Please take a few minutes and check out this wonderful opportunity!
First off I want to wish all of you (mostly anonymous) readers an optimistic and joyous new year for 2010. Whether you have cancer or you are supporting someone who does, your own positive attitude is a key element under your control that will help everything else work better and pave the way for staying ahead of bladder cancer, or any cancer. Do not accept that cancer is a death sentence, a done deal, but accept that working together with the doctors on the remedies they know PLUS doing some additional things can indeed keep the cancer at bay. And all of this is leveraged even more by positive attitudes. Read more about the importance of attitude here.
One thing I did after my last cystoscopy and all clear report a few weeks ago is update my treatment calendar. I initially published this calendar almost a year ago. And while it helped me to visualize what lies ahead, and many of you have looked at it, I am forced to admit that it is really difficult to interpret. Even Dr. Hopkins' eyes glazed over when I showed it to him. So I decided to re-work it and make it more clear. The thing that makes it difficult is that we have to line up three timelines: the cystoscopy schedule from Dr. Hopkins, the BCG maintenance schedule from Dr. Lamm, and the CT scan schedule from Dr. Hopkins. Complicating this fact is that the BCG and cystoscopy are driven from different start dates.
Here is Dr. Hopkins cystoscopy plan that he outlined to me verbally: Visual inspection via cystoscope every 3 months post TURBT for the first two years, every 6 months for the next two years, and then annually for life - as long as no cancer is detected. Along with each scoping we will do a urine cytology test. The start date for these is late May, 2008, when I completed my second TURBT. Additionally he requires a CT scan 12 months post TURBT then every 18 months. Dr. Hopkins is always quick to point out that there is plenty of leeway in these timings, as there is nothing requiring precision in this other than convenience for human beings to use calendars.
Here is Dr. Lamm's BCG maintenance schedule for me, to which Dr. Hopkins has agreed. After initial 6 BCG, maintenance series of (up to) three at 3, 6, 12, 18, and 24 months, annually to 6 years, then at year 8, 10, and 12. Since the initial 6 BCGs were 2 months after the TURBT, this gives a slightly different start date.
Given all of this, I created a different timeline for cystoscopy, BCG, and CT Scans - forcing them a few weeks now and then to line up properly. And everything pretty much works until the year 2015. Uncharacteristically for me, I am not going to worry about that for a while...
So here is the treatment calendar as of today. Am I depressed that BCG continues until 2020? Not at all - I look forward to being alive and fine at that time, and a bottle of resveratrol-laden red wine to celebrate!
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.
Beyond that, few will want details. Almost all will say, "If there's anything I can do, please let me know!" But nearly everyone will be frustrated, because there is really nothing they can do to help out someone who has cancer - UNTIL NOW! For bladder cancer the help needed is not much - a ride to and from the hospital for TURBTs, maybe some meals at home during recovery. Rides to and from BCG are nice to have, but not fully necessary, and meals during BCG days are not a big priority. And for flexible cystoscopy, even the ride is not really necessary. For other kinds of cancer, especially those involving chemotherapy or radiation, much more help can be provided. Certainly rides to and from treatments and meals for days afterward. And now I have some information on a new group that is doing something really helpful.
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