While this second treatment was a bit rougher than the second one three months ago, it was over and done faster than last week's. I pursued my own recommended regimen of relaxation, deep breathing, and careful mega-hydration. And I am a bit pleased to report that it worked quite well. Symptoms started earlier and were slightly more severe than last week, which was to be expected. But by 9:30PM I was pretty much fully recovered, and last night I got a decent night's sleep. Next week will be stronger still, but with renewed evidence that my regimen helps, I shall put it behind me quickly! My Doctor, who normally (and quite unusually) gives the BCG treatments himself, was off houseboating in Lake Powell, resting and relaxing with family and friends. While good for him, it left me with 3 choices - defer the treatment until Monday and interfere with work (not wise in this economy), have the BCG administered by the incompetent nitwit PA Regan (a non-starter), or set aside decorum and discomfort and have PA Liz give the BCG. I went with option number three. Liz had given me a BCG in 2008, again when the doc was vacationing, and it was awkward but acceptable. So I did some extra deep breathing and went forward with my best attitude. After double-checking and then triple-checking the 1/3 dosage with the nursing staff, I assumed a supine position on an exam table. This time we had been shown to yet another new room in the labyrinth, and this one was noisier (from the street traffic), smaller, and a bit creepier than the others - being furnished with a surgical table and a surgical chair rather than the normal exam tables. More deep breaths were in order.
Liz came in with a professional demeanor and warm smile. Two years of extra practice had truly increased her confidence. She was quite careful, deliberate, and a bit slow - but every bit professional. She clearly did not recall having treated me before, and I chose not to remind her. While I missed the speed with which Dr. Hopkins normally works, Liz was an apt substitute. Given my lack of paid leave for illness, it is likely I will have to use her in the future for one out of three treatments, so I guess it's all good, if a bit awkward.
The symptom table shows more urinary drama than six months ago, but less headache, body ache, and duration, so all in all I was pleased with the outcome. And even more pleased to feel fine, if a bit tired, just a day later. Disclaimer, it's about 3.5/10 on the nausea scale if you click to enlarge the table below.
Well if life is a pre-existing condition, then it probably follows logically that foolishness or stupidity is a pre-requisite. As you saw from the last post, Biohazard Man is back. And now belatedly I report on my first BCG treatment of Maintenance Series 5. I have had plenty of experience and over five months off, so I knew exactly what to do and what to expect. Or so one would believe. Unfortunately my data collection and experience increased my level of confidence. I simply knew this one would be easy-peasy, a cakewalk. And so it should have been.
Surely the trip to the doctor's office was normal. Beautiful weather, clear highways, no delays, and we arrived at 9:15 for my 9:30 appointment. We were in and ready to roll by 9:30, and Dr. Hopkins had no other patients to deal with. This was the first time we had done a visit on a Friday, and the place was very quiet. Ten minutes later the doctor came in and did the job. He and I were both a bit surprised that the catheter did not go in easily, and I can chalk that problem up to overconfidence mistake #1. The cystoscopy the week before had gone so well the I blew off the normal deep breathing exercises for the BCG, and it made things a bit more difficult. Not a big deal, but I made a note to add the breathing back in next time.
The BCG was instilled and we were back on the road home by 9:50. I was very thirsty, having forgotten how dehydrated one gets when abstaining from fluids, so I was careful not to hydrate too quickly. That worked OK, but during the second hour I forgot to double my intake as I normally do. This made the first urination much lower in volume than usual, but no discomfort. Even so, I should have taken the hint. I had my normal lunch of soup and toast, and then I sat at my desk and did emails and net surfing, drinking a good amount, but not really putting the effort into hydration. I declined to lie in the bed for this go-around, as the side effects were expected to be negligible. Checking the logs from six months ago, I was pleased to note the symptoms arrive right on schedule - mild as expected. Within 90 minutes they should be gone. So I continued sitting at the desk and sipping my iced tea. The symptoms, instead of clearing, became a bit worse. So I decided to move to the bed and hydrate more. Much to my surprise the symptoms stabilized, but did not decrease FOR 12 HOURS! Since there was no improvement I ramped up hydration in the evening, well after the special handling period.
This was too much and too late as it turns out. I finally went to bed exhausted at 11PM, and I was up every 60-90 minutes all night to pee like the proverbial racehorse. Rest and sleep? Forget about it! By early morning I was zombie-like, dehydrated, and sporting a headache. I spent most of Saturday resting and re-hydrating, all because I was too cocky to follow my own protocol. What was up with that? In a word - STUPIDITY!
The silver lining to this cloud is that the results do support the protocol of rest and super-hydration early in the process. But experimenting on oneself, especially unintentionally, is definitely not recommended.
The tables below show the results. The one on the left shows raw results (for readability), and the one on the right shows the evidence of under-hydration in red and outfall of over-hydration in blue. The side effects were more than the first round last time, and the squeamish may find the details to be about a 3 out of 10 on the gross-out scale, so one must click to enlarge the images below for those details. David F. in England tells me he made some similar errors in judgment during some of his BCG treatments, so I guess overconfidence breeds foolish behavior universally! I think we can all expect Biohazard Man to follow his protocol for the next two in this series...
Biohazard Man is back and he is bigger and better than ever! Check out this newBiohazard Man Version 2 graphic - leaner, more mature, and more graceful by far. This new image is mildly more accurate. There is even a Blackberry in his hand! You can read all about Biohazard Man'ssuperpowers and see the Version 1 graphic in theoriginal Biohazard Man post.
Early on in the scheme of things, after the initial shock of the cancer diagnosis and two TURBT surgeries, the absurdity of the process and the treatments started to appeal to me, and Biohazard Man was born. BCG is toxic, and it contains live, attenuated mycobacteria. Because of the potential risk for transmission, it should be prepared, handled, and disposed of as a biohazard material. And suddenly I have this stuff sloshing around in my bladder making my urine also toxic, requiring six hours of special handling after the initial instillation period. One must admit that nearly all superheroes were spawned from such odd beginnings - bite from a radioactive spider, a special mask, a powerful suit - so a toxic bladder seems right in line.
Let's face it. Here is a life-threatening disease whose treatment is a tube forced up your most private part in front of many witnesses of both genders, after which you are filled with toxic bio-cooties, all of this done on a regular basis, and you are even paying someone to do it to you! If you can't see the absurdity and have some fun with it, you are really missing out. I made up some business cards with the original graphic, my name, and the web page address of this blog on them. By last count I had given out over 100 of them. So now the challenge will be to incorporate the new design. As before, Biohazard Man is faster than a speeding ballet! More powerful than a loco-pollo!! Able to mount tall toilets at a single bound!!! Look in the sky! It's a bird! It's a plane!! It's BIOHAZARD MAN!!!! Beware of my toxic pee!
I have written here on more than one occasion that attitude is the most important thing, and this character is my attempt to spread good humor for all who wrestle with the evil forces of bladder cancer.
Two days later and I have pretty much recovered physically. Mentally? Jury is still out. Each successive Judgment Day does get easier to prepare for and to go through. Still the stress level is quite high, and there is a definite CRASH afterward. A couple of years ago I responded to the good news with joy and then a nasty head cold for a week. Despite the outward appearance, the body will indeed bottle up the stress, and the release can be ugly. For the past two or three I would simply not think about it until about a week before, and then I would be a mix of ugly mood swings and semi-suppressed anxiety. Taking a nice long vacation in advance of the date has become our practice for two reasons: 1) Trying to do more carpe diem activities, and 2) You just never know if the opportunity will be gone soon. Macabre? Maybe, but reason #2 does help drive towards reason #1, so it's all good. We prefaced this Judgment Day with an 8 day, 2000 mile motorcycle trip throughout some of the most beautiful parts of Idaho. Chasing rivers up and down mountains through forests will do wonders for your outlook, as will a nice slice of huckleberry pie! My favorite, these berries are hand picked and grown only in the wild, so they are naturally organic and full of cancer-fighting antioxidants. We arrived home late Saturday evening, tired but refreshed from our cobweb-clearing blast through fresh air and mountain vistas. No work on Sunday or Monday (Labor Day holiday in US), just time to relax at home. I found myself curiously not worked up about the upcoming cystoscopy, even though I was thinking about it from time to time.
Tuesday brought a ferociously busy work day and evening, slowing down a bit on Wednesday, which was when I found myself falling into "freakout mode." Stayed as busy as I could, and came home early to take a nap and try to relax. Refreshed myself on the deep-breathing technique and practiced a couple of times on Wednesday night. It really does help a lot. Slept pretty well and was up early for a long, hot shower and more deep breathing. The day was dark, gloomy, cool and overcast - giving a film noir effect. My procedure is almost always late in the mornings, but we were able to be first on the docket at 9AM. The trip down was traffic-free, safely after the morning rush hour into Salt Lake City. Arrived early and signed the consent form, then we were shown to the exam room a few minutes after 9. Urine sample given, the nurse asked me to disrobe (keeping only shirt and socks) and get on the table. Having noted that Dr. Hopkins had taken one patient before me, I asked if I could wait until we were truly "next." She was having none of that, so I smiled, replied, "Yes Ma'am!" and hopped to it. As I expected the wait was about 20 minutes before the doctor came in. I really should buy a piece of interesting art for them to mount on the ceiling over the exam table.
Dr. Hopkins was all smiles and business, noting that he had not seen me in quite a while - this being the first six-month space between cystoscopic exams. After verifying that we already had BCGs scheduled, he saw that I was relaxed and ready, so we proceeded. Happily the scope was hooked to the monitor for me to watch, and this focus really does improve my ability to relax and ignore the procedure. Sixty seconds later we could see that all was clear, and we were left alone. First order of business after getting dressed was to return the saline solution that had been instilled for the procedure, which left my bladder uncomfortably full. First fire-pee episode out of the way, I went to the front desk for my prophylactic antibiotic pill, after which we left the office and walked into the bright sunlight of a stunning day. Even the weather was changed to match the outcome!
Here is where things were different. In the past I had steadfastly refused to plan ANYTHING after a Judgment Day, due to my inability to make a firm commitment with uncertain outcomes. The last two times I planned (and pre-paid) for dinners out with the wine club, and even scheduled some meetings for work. But always with a bucket of disclaimers and cautions. But due to providence (or cosmic convergence if you like), I not only had plans out for the next couple of weeks, I had a meeting to run at work this very same day at noon! My wife dropped me at the building at 10:30 with instructions to retrieve me at 2PM. So rather than retiring to a solitary room to hydrate and recover (takes about a day and a half for cystosocopy), I was into full work mode nearly immediately. I did take a few minutes to dash off some email updates on the ALL CLEAR to those who had requested such, made calls to my parents and brother (who by then had already read the email), and got right to work. The meeting went fairly well, and I was also privileged to share the joy of my good results with various co-workers who stopped by to give cheers and high fives. My take on all of it? I told them, "From the neck up, I feel like dancing!"
I packed the laptop and moved to the home office to complete the work day, with plans to work from home on Friday. In the past I had always taken the day off to recover, and sometimes even the day after. But this time the plan for both cystoscopy and BCGs is very different. The reason is that in January my employer changed their policies and eliminated my bank of emergency sick days. They also converted normal sick days into "personal time" combined with vacations, rewarding their healthy workers and penalizing those with chronic conditions. We now are clearly considered to be a burden both to the corporation and society at large, so sacrifices must be made. And now my exams and BCGs are "personal time off" which is really vacation time, making for some of the worst vacations ever. For those who have not noticed, the economy in the US and Europe is awful, and despite the continued reassurances of the media, there is no evidence in real life to support the contention that recovery is here or coming soon. Therefore companies are reducing liabilities and expenses, knowing that options are slim for employees. I suspect they may feel some pain if the economy ever improves, but for now we shall play the game by their rules. What this means is that I had to do some small tasks and monitor email for the rest of the day and Friday.
Even though there is not much real physical trauma from which to recover, I am always amazed at the mental toll. The fiercest concentration was required to complete simple tasks, and the effort to hold coherent conversations was shocking. I believe I was able to muster enough energy to get things done, and slept well both nights. Today I feel much better, pretty much back to normal. Even though I have been through this and worse before, I am still amazed how difficult it is to recover mentally. Having to do productive work immediately afterward was taxing beyond my greatest expectations. I have also moved the BCGs from Thursday mornings to Fridays. My reason for selecting Thursday was that the doctors would be available on Friday should there be any trouble. But as a BCG veteran, there is no point in wasting a vacation day now. So Fridays will be BCG days and Saturdays will be flu-like symptom recovery day. The big drawback here is that Dr. Hopkins only works in the office on alternate Fridays. So we selected a schedule to go Friday, Thursday, Friday. But he is taking that middle week off, so I elected to go with PA Liz again and do the middle one on Friday. Hopefully it will not be as comical as the last time she substituted, the details of which were not really disclosed. Waiting for the book deal, I guess.
The bottom line is this. Two days after a clean report and now officially 27 months cancer free, I now really believe that I have crossed the two year bridge. While the bladder cancer is still very likely to recur once or more in the next eight years, it is highly unlikely to be very severe. Life is really looking up, and as always, GOD IS GOOD - ALL THE TIME.
Below are a few photos from the motorcycle ride through Idaho and our attendance at the WeSTOC XV rally. Click to enlarge any of them, and see if you can spot the deer in the first one!
In my mind this was a bigger milestone. Unfortunately my mind is a little bit mushy, post-climactic stress syndrome or something. Details on the Judgment Day, the cystoscopy, the significance, the outfall, the prognosis, and the next steps are forthcoming.
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.
. I pursued my own recommended regimen of relaxation, deep breathing, and careful mega-hydration. And I am a bit pleased to report that it worked quite well. Symptoms started earlier and were slightly more severe than last week, which was to be expected. But by 9:30PM I was pretty much fully recovered, and last night I got a decent night's sleep. Next week will be stronger still, but with renewed evidence that my regimen helps, I shall put it behind me quickly!
While good for him, it left me with 3 choices - defer the treatment until Monday and interfere with work (not wise in this economy), have the BCG administered by the incompetent nitwit PA Regan (a non-starter), or set aside decorum and discomfort and have PA Liz give the BCG. I went with option number three. Liz had given me a BCG in 2008, again when the doc was vacationing, and it was awkward but acceptable. So I did some extra deep breathing and went forward with my best attitude. After double-checking and then triple-checking the 1/3 dosage with the nursing staff, I assumed a supine position on an exam table. This time we had been shown to yet another new room in the labyrinth, and this one was noisier (from the street traffic), smaller, and a bit creepier than the others - being furnished with a surgical table and a surgical chair rather than the normal exam tables. More deep breaths were in order.
She was quite careful, deliberate, and a bit slow - but every bit professional. She clearly did not recall having treated me before, and I chose not to remind her. While I missed the speed with which Dr. Hopkins normally works, Liz was an apt substitute. Given my lack of paid leave for illness, it is likely I will have to use her in the future for one out of three treatments, so I guess it's all good, if a bit awkward.
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