BCG Series 5 - Last of 3 Treatements - October 2, 2010

Good news all around - I did verify with my doctor that the next BCG interval has moved out to ONE YEAR. So we still have a CT scan and cystocopy in March, 2011, but no more BCG until after a second cystoscopy next September. This is wonderful news indeed! And even with my error in judgment on the first treatment of this series, the data for reaction to the BCG this time are well within the family of what could have been expected. My hydration protocol worked like a champ last week, and so was repeated this week. With the increase in reaction (as expected), I made sure to slow but not dramatically drop the hydration intake at the end of the special handling period. As a consequence I was again up during the night to urinate at 11PM, midnight, 2AM, 5AM, 6AM and 7AM, but these had a more "normal" character - no being awakened by pain and then peeing like a racehorse! Really there is no getting around the third series - it is meant to have an effect and it does Hydration regimen this time made the urinary symptoms less than the third treatment of Series 4 (last time). The flu-like symptoms seemed to be slightly less also - and this may be to my decision to stay in bed most of Day 2 (today - Saturday). In the past I had been resuming normal activities as soon as I felt better, and this activity may well have impacted the tiredness I experienced early in the workweek. We shall see, as I expect to take it easy tomorrow as well, before hitting the grind again on Monday.

The extra hydration and extra reaction added up to extra throughput and even more frequent dashes to the toilet. Several times during the afternoon I fell a few minutes short of making the full 20 minute intervals for sterilization! It was good to have my own private express lane here in the house with all the supplies at hand!

I should focus on the non-urinary side effects more, as they are only poorly described in my side effects tables. Starting about 5-6 hours after installation there is usually some cramping in the lower stomach or bladder area, and also around the right kidney in my lower back. Sometimes short in duration and severe, sometimes long in duration and mild, these cramps are always a wild card. Ibuprofen seems to alleviate the inflammation and swelling and dispose of the long duration ones quite well. Additionally there is pain and soreness around the "affected area" and often some generalized body aches and/or a headache. I find that acetaminophen addresses this type of pain more effectively. In the morning I try to gauge which flavor of discomfort is more pronounced, and then treat with the corresponding pills. For the general tiredness, exhaustion, and run-down feeling, all that will help is time and rest. For an introvert such as myself, time alone in a semi-dark room with TV or music to mildly distract me seems to work best. The other lesson learned is to rest, even when feeling dramatically better. This takes some discipline, especially when the weather is near-perfect as it usually is in Utah in September. Another thing I have to watch is my blog writing. My exhaustion and sometimes even "brain fog" renders me incapable of putting coherent thoughts together, and that effect may often be observed in these next-day postings. Fortunately my father reads these blog postings carefully and sends polite emails pointing out such errors, so they get fixed soon after posting!

For those interested in the details, the reaction table is below, about 4.5/10 on the nausea scale.

BCG Series 5 - Second of 3 Treatements - September 25, 2010

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.

BCG Series 5 - First of 3 Treatements - September 19, 2010

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 Version 2 - September 17, 2010

Biohazard Man is back and he is bigger and better than ever! Check out this new Biohazard 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's superpowers and see the Version 1 graphic in the original 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.

Judgment Day #7 - Report, Aftermath, & Musings - September 11, 2010

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!

Judgment Day #7 - Cancer FREE 27 Months (and counting) - September 9, 2010

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.

Stay tuned to this space!

Bad News About Agave Nectar, Honey, and other Concentrated Fructose Sweeteners - August 12, 2010

This is all bad news, so I shall keep it short and not sweet at all. I have previously reported that sugar, especially sucrose (table sugar) and glucose (regular corn syrup) should be strictly avoided by cancer warriors. I further suggested that High Fructose Corn Syrup (HFCS) should also be avoided, as it is chemically about the same as table sugar (sucrose is 50/50 glucose and fructose while HFCS ranges from 45/55 to 40/60) while saving your body even the small work of breaking one chemical bond that unites these two simple sugars in sucrose. The reason I gave for this is that intake of these high-glucose sweeteners will spike your blood sugar and super-energize cancer cells by showering them with their favorite food source. Clear, recent, peer-reviewed evidence supports the fact that HFCS is more dangerous than table sugar. Alternatives that I suggested were honey and agave nectar, both forms of fructose (also known as fruit sugar). Some new research from UCLA has indicated that fructose is particularly evil for cancer warriors, even though it does NOT spike blood glucose and is therefore safe for diabetics. The reason is that when the fructose eventually enters a cancer cell, it turns out that the cancer actually PREFERS the fructose for non-oxidative respiration (fermentation), leading to bad side effects like inflammation, uric acid, and healthy/happy cancer cells. While the research article was based only on the particularly nasty pancreatic cancer, it is well known that ALL cancers metabolize sugars in identical fashion.

This is a very unpleasant surprise to those of us who found agave nectar to be a "free pass" to sugar sweetness (and calories) without the risk. So even though Oprah puts agave nectar in her oatmeal (a fact that has driven demand high and promoted widespread availability), cancer is well fed by fructose. My cousin who lives in Mexico, a few miles from the area where most agave nectar is sourced, has also passed on some information that very nasty chemicals are often used in conjunction with making the "nectar," adding to the risk of using it as food. And the amount of fructose naturally occurring in fruit is not large enough to be of concern, but fruit juice (which has the equivalent of way more fruit than you could eat in a sitting) is also a path to high fructose intake. So it looks like Stevia or very limited amounts of organic table sugar, brown sugar, or pure maple syrup are the only alternatives at this point. Honey should be used only in the strictest moderation. Artificial sweeteners? Don't even think about messing with these highly processed chemicals. Safest would be nothing at all.

Please read the comments below this post for some interesting further discussions about fructose and stevia.

Bladder Cancer Awareness Day - July 17, 2010

I apologize first of all for the belated post, having missed July 17 by about 3 weeks, and second of all for stealing most of the content from my fellow-survivor David Ferdinando, who lives near London in the U.K. Even though we are both aware of bladder cancer EVERY day, David is more aware of what is going on in the USA on an advocacy level than I have been. So I will catch up a bit here, and will also refer you to his excellent blog, My Bladder Cancer Journey. David's blog is much more journal-style, almost a stream of consciousness. It gives an outstanding picture of the emotional swings that come with battling cancer. Since mine is much more article based, organized as reflective of my nature, the combination of the two makes for an excellent image of how bladder cancer warriors live. And live we do, and we intend to continue. As I have stated often, attitude is a key element found in survivors of cancer of any type. Feeling depressed about your cancer? Kick yourself in the ass, get angry, whatever it takes to get back on top. If you are fighting cancer mentally every day, the body will respond to make its environment less friendly for the disease.

For those of you who are not aware, Bladder Cancer is the 5th most frequently-occurring cancer in the world. For men it is the 4th most "popular." If that is the case, why have most people never heard of it? Why don't you know more people that have it? In my case I was the first person I knew that ever had it. I think the answer is summarized well by CBS News correspondent Bob Schieffer in the video below. This spot aired at the end of the CBS Evening News with Katie Couric last night (August 5, 2010).



https://youtu.be/Sqdolk6wR0M

For those who don't care to watch the video (very well done, high resolution, and less than 3 minutes long) Bob says, "People don't like to talk about diseases that happen to you below the belt. It's embarrassing to talk about." And that is certainly true. I have also discovered that many cancer survivors prefer to keep their status a secret for personal reasons, and often to prevent limiting their careers. I decided early on that keeping secrets was not consistent with my nature, and that asking around and seeking information required some disclosure anyway. Between my brother's urging and the absence of internet details on what it really feels like to have bladder cancer or undergo BCG treatments, I decided to go even more public with this blog. And after discussing my private parts on an open forum for over two years now, it becomes much easier - perhaps to the embarrassment of my family and friends!

As for information on the internet, there is the well-known problem of both too much and not enough. Too much in general and not enough specifically addressing your question. I have tried to use post labels and key words in post titles to make it easier for search engines to find my posts that address specific issues, and it seems to be working. I see that many have found posts that directly address their search queries using Google, Bing, Yahoo, and other search engines. Most visitors come from the USA, Canada, England, and Australia with a few from New Zealand, Portugal, Israel, and India. For the most part you all find what you are looking for, or at least my opinion about it, and are done after a couple of minutes and a few page views. I rarely get comments or emails, so I presume it must be working. I never get complaints, anyhow. If you do have a complaint, I guarantee to give you your money back, LOL. (Laughing out loud because my advice is free of charge)

As for web resources other than my own, I do have a post on Bladder Cancer Sites and Blogs. One of those, which is also listed in my sidebar to the left, is the Bladder Cancer Advocacy Network. When I originally researched them about 2 years ago, they were focused primarily on raising awareness to get a better shot at government and other funding for research. While it is still their main purpose, they have expanded their reach a bit and have regular newsletters and many helpful links on the latest research, clinical trials, news events, and other social aspects to connect bladder cancer warriors. And this year they sponsored a national Bladder Cancer Awareness Day.

The organization level of the site and the organization have improved dramatically, and I now subscribe to their email updates and newsletters. So perhaps next year I won't miss the formal awareness day. Word is getting out that we do not have to be passive about this disease, and we can do things that may help the medical treatments be more successful in keeping cancer at bay. So happy watching, happy researching, and positive attitudes to you all!

Exercise is a Crock of Poo - July 5, 2010

If you have read anything I have ever written about exercise, you will know that I never present it in a positive light. I am not opposed to DOING something like playing a sport. But just to exercise - on a machine, with weights, bicycle, or running is both physical and mental anguish for me. Furthermore, I never experience any of the purported benefits from this misery and drudgery. Those who feel exhilarated and energized after a fitness regimen - good for you! Feel free to bite me. I am just happy when I don't feel nausea on top of exhaustion. I have tried them all - "Fat burning" cardio, low intensity long duration, interval, and even high intensity interval. Not only do they all suck, but they don't appear to do me any good. Still I shall continue, because if being miserable for half an hour a day helps in any way to defeat cancer, I will do it. But don't be telling me how much better I will feel or how much weight I will lose. There are no data to support these fairy tales.

The latest data set comes from my international friendly competition with David F. in England. He was distressed at recent weight gain. I had never lost the 10 pounds I gained in Mexico, so I proposed a contest. He quickly agreed, and after a week it was off to the races. David's diet of rabbit food and stress (from working a start-up venture) combined with interval training has paid off for him in spades. I maintained my relatively low calorie diet, and added exercise 4-6 days per week. After 4 weeks David is reduced by 8 pounds. I lost zero, one, one, and then gained two - leaving me at net zero. The tale of the scale is illustrated by the graph below:



What can we make of all this? Hopefully nothing. Perhaps my "fat burning furnace" will ultimately kick in, and I can make some sort of showing. I have no idea. My friend Trevor convinced me of the merits of playing squash - the only racquet sport in which the length of volley increases with skill level. He even delivered a few weeks of informal training, and I must say I enjoyed it a lot. It is a game that involves the mind completely, as well as the body. I wore my heart rate monitor and had to ask for several breathers even in our fairly light workout. Experience will teach that not every shot can be won or every ball chased! For more stimulation, a quick internet search reveals this interesting tidbit - for a few brief months in 2001, one British professional squash player single-handedly changed the entire "look" of the game. Check out Vicky Botwright here.

I was nearly ready to take the plunge, and take some formal training in conjunction with a club membership, when a toe injury combined with a back injury to delay that plan for over a year. It may be that it is time to add this sport to the mix soon. I have to take a look at calendar, budgets and so forth. Might make more sense to delay until after the next cystoscopy to ensure everything is still all clear, and get 3 more BCGs done, before making a time and money commitment to squash. I shall have to think about it.

In the meantime one thing remains constant. Exercise SUCKS!

Life and Mental Health - May 30, 2010

If you visit this blog a few times, you can see that the day to day updates appear at the top of the column to the left, while research, medical details, and "deep thoughts" are presented as blog posts. The latter were quite frequent early on when medical interference was also commonplace. Having "graduated" now to the post-two-year cancer free status, my urologist decided to back off a bit. Clear cystoscopy and 3 BCG treatments in March, then no more visits to him until September 9. April-August created a five month window, the longest time I have gone between medical things since all this started over two years ago.

For the past two years solid my primary focus has been doing research, doing medical treatments, changing diet, lifestyle, and supplement regimens, and even some hated exercise. I even devised a logic chart for a multi-modal attack on any type of cancer. Many good things have happened in addition to the cancer-free status - I have lost weight, my complexion has cleared up completely, my hair is growing back (filling in a male pattern bald spot, NOT from having been killed by chemo or radiation), I feel great, and I even look better. My own father did not recognize me when I accosted him in a crowded room a couple of weeks ago. Having five months now free from all this focus is entirely new territory. Now that I feel and look better and have nothing binding me to focus fully on health and medicine, I must admit that I was fully unprepared to deal with it. I suppose an analogy might be to put a lot of effort into climbing a mountain - so much effort and focus that, upon reaching the top, the climber is at a loss for what to do next. Take photos? Jump for joy? Have lunch? Open champagne? And so, nonplussed, our climber just stands there.

And that brings us to today's topic. I had steadfastly refused to plan beyond the next cystoscopy for over one year, and only cautiously planned things a couple of weeks beyond for the past year. Four times we planned big vacations just before the next cystoscopy Judgment Days (two to Mexico and two 10-day motorcycle trips), just to get what might potentially be one last big trip before any bad news. Having "stood motionless on top of the mountain" for nearly a month, it is now time to focus on mental health in addition to physical health. To be sure the two are linked, and I have been maintaining a positive attitude. But this new approach goes beyond - it takes me to a place to begin to visualize NOT dealing with cancer, but to LIVING with cancer. Realizing and internalizing that BLADDER CANCER IS NOT A DEATH SENTENCE. While there is still a high probability of recurrence, I am doing everything I can to battle it, and any recurrence should not be much more than a nuisance.

So what does it mean to begin LIVING again? I decided to start small. At the beginning of May we joined my parents for a few days of rest and recreation in Las Vegas. It is a 6 hour drive from here to there, and we had a great time dining, going to shows, relaxing, and even a modicum of gambling (I was a net winner at that). So what to do next? It had been my habit, pre-bladder-cancer, to take my birthday off work each year and go for a motorcycle trip by myself. This trip refreshed my spirit and made coping with the aging process easier. As an introvert I become energized during times spent totally alone, and motorcycling is a perfect hobby for me. I don't have a Harley, and I don't go to Sturgis or any other pack-mentality type of gathering. Instead I have a Honda ST1300, and I tend to ride alone, or alone with my wife as a passenger, or maybe on occasion with one or two other riders. But the birthday trip is always a solo trip - the first of the season. Over the years it had expanded from one day to a long weekend. And I had skipped 2008 and 2009. And my birthday is in late May, making the ritual bike trip a perfect next step to begin living life again. So four days were set aside with destination to be determined on a daily basis, driven primarily by weather factors. This is difficult to explain to those that don't have the bug. A circle of friends of mine who have the same kind of bike developed a term for a fictitious drug, motorcyclene, which is akin to the endorphin high experienced by athletes. While not physically difficult, motorcycling demands intense mental concentration and tight control of fine motor skills for long periods of time, leaving the rider both exhausted and refreshed. My friend described it like this:

On the open range the road, the landscape, and the machine all provide an experience that is for me soul centering. The rhythm of the ride is at once calming, reassuring. It is rarely achieved until more than a hundred miles have been traveled. This period of lonely introspection and intense observation yields a sense of appreciation and perspective of life that I've never experienced in any other endeavor. It is like meditation, but perhaps a little more like worship. The intensity of concentration required is at once enormous and yet completely liberating*.

And so it went. Four days, 1,800 miles (almost 2900km), 3 nights in hotels, meals ranging from fine dining to a burrito at a roadside picnic table, and weather that was less than cooperative, I have returned - relaxed, refreshed, revitalized, and ready to consider LIVING again. Whatever you do for fun, be assured that the day will come, given hard work on your part along with your doctors, that you can consider living again.

This birthday was #51 for me. I have discovered through a friend that in Brazil the 51st birthday is always called "A good idea!" It seems that the national alcoholic drink, the caipirinha, is made with a distilled spirit similar to rum, called cachaça. While I have not tried either the drink or the ingredient, there is some appeal. As it turns out the most popular brand of cachaça in Brazil is Cachaça 51, and their advertising catch phrase is, "uma boa idéia." This translates to "a good idea." So like Coca-Cola is "the real thing," 51 is "a good idea." So my good idea to celebrate my good idea birthday was to go on a long motorcycle ride. Details with 25+ high definition photos and NO MEDICAL CONTENT whatsoever may be found on a separate page,linked below. Have a virtual slice of my 51st birthday cake and follow along by clicking on the photo or link below...

A Good Idea!

*Warren C. Harhay, June 1, 1999